Making Sense of It All - 2025
Author: Reaching Families
Date: 2025-05-30 00:00:00+01:00
Keywords: Disability; disabled children; family; guide to services; local offer; Reaching Families; West Sussex
Description: Making Sense of It All From Birth to Adulthood A Guide to Special Educational Needs and Disabilities for Families in West Sussex May 2025 Written and edited by parent-carers

Making Sense of It All

From Birth to Adulthood

A Guide to Special Educational Needs and Disabilities for Families in West Sussex

May 2025

About this book

About Reaching Families

Reaching Families is a grassroots charity led by parent-carers, which aims to ‘empower, inform and support parents and families of children and young people with SEND in West Sussex’. We achieve our mission through delivery of a one stop shop of services that include:

▶    Making Sense of It All – our in-depth parent-carer guide covering SEND issues from birth to adulthood

▶    Fact sheets and animations – a miscellaneous library of online resources covering a wide range of subjects and issues

▶    Training – one-off training workshops and courses covering a wide range of subjects and issues

▶    Benefits Advice Service – information, advice and support for parents of children with SEND in West Sussex applying for Carer’s Allowance, Disability Living Allowance (DLA) and/or Personal Independence Payment (PIP)

▶    NDP Navigation Service – information, advice, training and signposting for parents of children waiting on, undergoing or following assessment for ADHD, autism or another neurodivergent condition

▶    Face-2-Face Befriending – volunteer-based peer befriending for parents and carers of children who are undergoing or have recently undergone assessment for a special educational need or disability

▶    Umbrellas – parent-carer support groups based in Burgess Hill, Chichester, Horsham, Littlehampton, Shoreham-by-Sea, Worthing, and online via Zoom

▶    Facebook group – information, signposting and peer support for parent-carers across West Sussex

For further information on our individual projects and services please visit www.reachingfamilies.org.uk.

A note about terminology: to be inclusive and to avoid unnecessary repetition, we have used ‘SEND’ (Special Educational Needs and Disabilities) as an umbrella term to cover any condition or additional need that children may have. Information on conditions can be found on our fact sheets, which can be downloaded from: www.reachingfamilies.org.uk/factsheets.

The Children’s and Families Act, 2014 defines a parent carer as being: ‘a person aged 18 or over who provides or intends to provide care for a disabled child for whom the person has parental responsibility.’ (97, 2). In this book, the term ‘parent carer’ is used in the same way to refer to families where the child’s main carers are grandparents, kin carers or foster parents, for example.

Using this guide with the Local Offer

In September 2014, the Children and Families Act made it a statutory obligation for local authorities to provide parents with information on SEND provision in their area via a website known as the ‘Local Offer’. This should be available to all families who have children with SEND aged from birth to 25 years and it must also be available in another format to families who don’t have access to the Internet.

The Local Offer brings together information and services available in a given local authority area. To create their Local Offer, each local authority must talk to parent carers, as well as children and young people with SEND, to see what sort of services and support they need.

No information resource, whether online or printed, can be truly encyclopaedic. By definition the information landscape is constantly changing – services change shape and structure, new organisations are founded while others close.

This is why we believe that used together, our book and the Local Offer website complement each other brilliantly. Where you cannot find information in one we hope that you can find it in the other. The constantly changing landscape also means we will produce further editions of our book on a two-year rolling basis.

We hope that by using our book, Making Sense Of It All, with the Local Offer you will have the best support and information at your fingertips, so you can navigate your way through the system as smoothly as possible.

For the Local Offer go to: https://westsussex.local-offer.org.

Section one: Starting your journey

Diagnosis

Most of us at Reaching Families found that the hardest times we faced as parent-carers were in the early days, when we were first aware that our children may have a disability or additional needs. Some of us were given a diagnosis before or just after our children were born. For others, the needs of our children only became apparent over time, or were acquired due to an illness or an injury.

A few of us discovered that, although it was clear that our children have additional needs, professionals were unable to give us a firm diagnosis. This can be quite common for children with complex needs, or unusual symptoms, or there may simply be no identifiable reason for the issues a child has. Not having answers or being able to put a name to your child’s condition can be exceptionally hard.

But the thing that unites all parent-carers is that the immediate aftermath of realising our children have additional needs is very painful. We have to adjust the path we had planned for our family and accept that some of the things we have dreamed of for our children may not happen. Some of us felt like we were grieving for the child we imagined we would have, and felt unsure that we could cope with what lay ahead.

Feelings around diagnosis

Parents have very different reactions when they realise their child may have additional needs. Some may shy away from it, in the hope that things will be OK, others find that they have to convince their doctor or health visitor that their child needs further investigations.

Some of us felt completely devastated, then angry – why us? Was it something we did wrong during the pregnancy? Could we have done anything to prevent it? Why wasn’t it picked up during pregnancy? And yes, we all felt bereft: ‘This isn’t the child I expected’.

It is common to feel crushingly guilty at some of the thoughts that go through your head. But whatever you’re feeling at this moment – anger, despair, fear or overwhelming protectiveness – all of us have experienced similar feelings and understand just how difficult it is to process these emotions. For a time it feels like nothing will ever be the same again.

In spite of the strong feelings it evokes, having a diagnosis can be helpful. You can start to read up on the condition, join relevant local or national organisations, find out about the latest research and, perhaps most importantly, meet other parents in the same boat. It can also be a great asset when you’re applying for various benefits to be able to say, “My child suffers from X syndrome” or “has Y disability”. Do note, however, that in most cases, getting a specific diagnosis is not a requirement for practical or financial support.

Strategies for coping with diagnosis

It can take anything from a few months to several years to feel like you are beginning to deal with this different life and for it to become the ‘new normal’. We all need a lot of help along the way but it can be useful to think about what steps you can take to make sense of what you’re finding out about your child. You may find these suggestions helpful:

▶    Ask someone to come with you to support you in the appointments. If you are given unexpected news, it can be difficult to deal with alone

▶    Make a list of the questions you want to ask and take it with you – don’t be afraid to raise any concerns you have

▶    Take time to think about what is said and, if you don’t understand something, ask for clarification

▶    Ask what will happen next, who you can speak to regularly for advice and where you can get more information.

Getting a second opinion

Sometimes parents want a diagnosis reconfirmed to ensure they have explored every possible avenue on their child’s behalf. Some doctors are very sympathetic towards these feelings. Your child’s GP or consultant may be willing to refer you to a different consultant for a second opinion, but they don’t have to if they don’t agree it is necessary.

Parents who can afford to might choose to approach private consultants. Private health care is very expensive and it’s not easy to establish who is an expert on any particular condition. Nationally, you may be able to get advice about this from The Patients Association (www.patients-association.org.uk) or the Care Quality Commission (CQC) (www.cqc.org.uk). The Independent Provider of Special Education Advice (IPSEA) (www.ipsea.org.uk) also has useful information for people seeking private practitioners in educational psychology, occupational therapy, physiotherapy or speech and language therapy.

Where your child might be diagnosed

Before or shortly after birth

Some of us knew before our babies were born that they were likely to have some sort of disability. It’s a time for lots of questions: “What treatment is there?”; “Will my baby need surgery?”; “Is it life-threatening?”; “Where can I find out more?” Many of these questions can be answered by your consultant, who can talk you through what is likely to happen.

Some of our babies started life on the neonatal or Special Care Baby Units (SCBU) at St Richard’s Hospital in Chichester, East Surrey Hospital in Redhill, Princess Royal Hospital in Haywards Heath, Worthing Hospital, or – for those who needed more intensive treatment – the Trevor Mann Unit at the Royal Sussex County Hospital in Brighton. In some cases, children are referred for further tests to London hospitals such as the Evelina Children’s Hospital, King’s College Hospital, Great Ormond Street Hospital or St George’s.

Child Development Centres (CDC)

Many children will be diagnosed or assessed at their local NHS Child Development Centre (CDC).

There are four CDCs in West Sussex: Chichester, Crawley (which has an outreach clinic at Horsham Hospital’s Hilltop Centre), Haywards Heath and Worthing.

If you are worried that your child is not developing normally and feel that they would benefit from an assessment at your local centre, ask a professional – such as your GP, preschool teacher, health visitor or consultant – for a referral.

Many different specialists are based within the CDCs, including paediatricians, health visitors, children’s specialist nurses, clinical psychologists, speech and language therapists, occupational therapists and physiotherapists, among others. They work together to assess children both individually and collectively, then plan a programme of therapy and treatment.

Sussex Partnership NHS Foundation Trust Neurodevelopmental Service

This service provides diagnostic assessment of neurodevelopmental conditions in children and young people. It also provides ongoing management of Attention Deficit Hyperactivity Disorder (ADHD) medication for those with an ADHD diagnosis who meet the criteria for medication under 18 years.

The Neurodevelopmental Team (NDT) undertakes the assessment and diagnosis of:

▶    ADHD for ages 6-18

▶    Autism for ages 11-18 (ages 9-18 in Chichester due to commissioning arrangements at time of print)

The Neurodevelopmental Team includes psychiatrists, psychologists, nurses, social workers, occupational therapists, mental health practitioners, assistant psychologists, prescribers, speech and language therapists, managers and administrative staff. You may see a combination of these professionals during the assessment process.

The Neurodevelopmental Team is a mix of neurotypical and neurodivergent staff who have lived experience that enables them to take a positive position and make a greater difference when working with children, young people and their families/carers.

For advice and information about how to access the neurodevelopmental service, please visit www.sussexcamhs.nhs.uk/our-services/service-finder/neurodevelopmental-service-children-and-young-people.

If your young person is 18+ and thinks they may have autism, they can seek a referral from their GP or other health care professional to Neurodevelopmental Services (Adult) – although please note that waiting times for assessment are very long. For further information on this service, visit www.sussexpartnership.nhs.uk and search for Neurodevelopmental Services. If your young person thinks they have may have ADHD, they should ask their GP for a referral to Assessment Treatment Services.

Right to Choose

Waiting times for assessment for ADHD and autism can be several years and become an enormous source of anxiety and stress for families. Under the NHS Right to Choose Framework, more families are opting to be referred to NHS providers elsewhere in the country or private and independent providers contracted by the NHS to carry out assessments.

You can exercise the Right to Choose when you receive an NHS referral for your first appointment and the GP has made the referral. There are many exceptions when Right to Choose does not apply – for example, in the case of urgent or emergency treatment, or where assessment is already under way.

When choosing another NHS or independent provider, it is important to discuss the options with your GP. Some providers now have longer waiting lists or involve considerable travel costs that will not be covered by the NHS. It may be worth asking other parents about their experiences and undertaking your own research on the providers you have in mind. You can find further information on Right to Choose at: www.sussex.ics.nhs.uk/our-work/cyp/special-educational-needs-and-disability-send/waiting-neurodevelopmental/nhs-rtc-framework.

Private assessments

More and more families are choosing to opt for private assessments for ADHD, autism and other conditions. This can be costly, and you need to find a suitably qualified provider who is registered with an appropriate regulatory body and complies with statutory guidelines. If you will be using a private report to submit as evidence for an Education, Health & Care Needs Assessment (EHCNA), check it meets the SEND Tribunal’s expert witness guidance. As with Right to Choose, we would recommend talking to your GP and asking other parents about their experiences. It is also important to keep your child on any NHS waiting lists. If, for example, your child receives a private diagnosis for ADHD you will have to pay for medication yourself, but if they are then seen by CAMHS, the NHS may cover these costs.

NDP Navigation Service

This service, delivered by Reaching Families, provides information, advice, signposting and training to parents of children waiting on, undergoing or following assessment for ADHD, autism and other neurodivergent conditions. Referral is by professionals only. For further information on the service, visit www.reachingfamilies.org.uk/ndp.

Befriending

Sometimes the best people for parents of children undergoing diagnosis to speak to are other parent-carers who have a similar life experience. Reaching Families’ befriending service matches trained parent-carer volunteer befrienders with parents of children waiting on, undergoing or following assessment for a special educational need or disability. Wherever possible, the service matches parents based on their child’s diagnosis and similar life experiences. For further information on this service, visit www.reachingfamilies.org.uk/befriending.

Finding out more

If your child receives a specific diagnosis, you may wonder where you can get information about their condition or disability. The NHS website cited above has a fairly comprehensive A to Z list of illnesses, conditions and disabilities.

Reaching Families has published a series of localised fact sheets on a range of disabilities, which may prove useful when you are beginning to find out more about your child’s condition, their needs and what support is available to them locally. All of our fact sheets are available to download free from our website – www.reachingfamilies.org.uk/factsheets. They combine clinical information on individual conditions with information on relevant support that’s available locally.

Contact (www.contact.org.uk) is a national organisation that offers support and information to parents of children with disabilities. They produce a comprehensive directory of specific conditions and syndromes with details of family support networks. They also co-ordinate a network for parents whose children have a rare condition or no specific diagnosis.

You can also get information and advice from Genetic Alliance UK (www.geneticalliance.org.uk), which runs the Syndromes Without a Name (SWAN UK) network, and the Rare Disease UK campaign. Unique (www.rarechromo.org), the rare chromosome disorder support group, also offers information, advice and networking. See our National Directory for contact details.

Section one: Starting your journey

Your wellbeing and someone to talk to

Finding out your child has SEND can be very painful. Years after we first heard the news, many of us are still reliving everything that happened at that time.

Our children are all very different, but the one thing we all have in common is the need to talk about what happened. For some of us, having a supportive family can be enough.

Some of us met someone who was a marvellous shoulder to cry on. Others were pointed in the direction of a parent support group or counsellor.

Support groups in West Sussex

Especially in the early days, many parents find that joining a support group is a lifesaver. If your child has just been diagnosed and you’re frightened of what might lie ahead, meeting a parent with an older child with similar needs to yours can make you feel more able to manage. People whose children have similar needs can be a great source of support and information.

For others, just having a community of parents who they can share similar stories or concerns with, even if their children have very different needs, can be really beneficial.

The following is a list of some of the major support groups for parents operating across West Sussex. Some are for specific conditions, while others have a more general focus on SEND.

▶    Autism Support Crawley is a support group for parents and carers of children and adults on the autism spectrum or with social communication difficulties. They hold regular face-to-face meetings in Crawley, as well as online. For further information, visit www.autismsupportcrawley.co.uk

▶    Brighton, Hove & West Sussex Deaf Children’s Society has a Facebook page offering information and regular coffee mornings

▶    Mid Sussex Parents of SEN Children (MSPSC) is a Facebook group for parents of children in Mid Sussex who are raising children with autism or other additional learning needs

▶    Parenting Autism Together in Horsham (PATH) is a Facebook group for parents of children with autism, based in Horsham

▶    Reaching Families runs the ‘Umbrellas’ support groups for parent-carers in West Sussex. Groups are based in Burgess Hill, Chichester, Horsham, Littlehampton, Shoreham-by-Sea and Worthing, and online via Zoom. There is also a very active closed Facebook page for parent-carers, with several thousand members who give each other peer support, share information and news etc.

▶    Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs support groups that meet in Burgess Hill, Crawley and Worthing. For further information, visit www.sasbah.org.uk

▶    Special Families East Grinstead is a support group for families with disabilities and special needs in East Grinstead and the surrounding villages. It runs coffee mornings, social evenings and events, and has an active Facebook group

▶    SEND Together is a generalised support group for parent-carers that meets monthly on a Wednesday evening in Felpham. You can find further details by searching for their page on Facebook

▶    Tourette’s Sussex is a Facebook support for people who have a child or other family member with Tourette’s

▶    West Sussex ADHD Support Crawley is a Facebook group providing information and peer support for parent-carers of children with ADHD

▶    Worthing ADHD Support is a Facebook group providing information and peer support for parent-carers of children with ADHD

▶    Worthing Down’s Syndrome Support Group is a Facebook group for parent-carers of children and young people with Down’s Syndrome in Worthing and surrounding areas

Facebook

Facebook has proved to be a very popular way for parents to contact one another and stay in touch with what is going on locally. Almost all the local charities and support groups mentioned in this guide have a presence on Facebook.

We would therefore suggest that parents who are not already on Facebook may find it useful to sign up, so that they can join relevant local charities and support groups.

General support for parent-carers

There are several voluntary organisations and groups in West Sussex offering a broader range of services that support the wellbeing of parent-carers of children with SEND.

Reaching Families delivers a wide range of services to parent-carers, including a library of fact sheets and animations, training workshops, a benefits advice service, a volunteer befriending service for parents of children who are undergoing (or have recently undergone) assessment for SEND and, as mentioned above, several support groups based across West Sussex. Reaching Families also runs the NDP Navigation Service, which provides information, advice, signposting and training to parents of children undergoing assessment for ADHD, autism and other neurodivergent conditions. They also have a very large Facebook support group. For further information, visit www.reachingfamilies.org.uk.

West Sussex Parent Carer Forum (www.wspcf.org.uk) runs regular parent-carer coffee mornings, training workshops and information sessions with statutory services. The emphasis of their work is slightly different to that of Reaching Families: they represent parent-carers at a strategic level to help shape statutory services in the county. For further information, visit www.wspcf.org.uk.

Some SEND organisations in West Sussex are more localised to specific areas in the county, such as the Parents and Carers Support Organisation (PACSO) (www.pacso.org.uk), based in Chichester and Arun, Kangaroos (www.kangaroos.org.uk) in Haywards Heath and Springboard (www.springboardsupport.org) in Horsham. They provide support and activities for families with children or young people who have special educational needs, promoting wellbeing and providing opportunities to meet other parents. They also provide Short Breaks for families of children and young people with SEND.

Carers Support West Sussex (CSWS) (www.carerssupport.org.uk) is a generalised support service for all carers in West Sussex, including parent-carers. They provide a range of services including carer coaching, a benefits advice service and a carers’ emergency contact card. To receive support you need to register with them as a carer.

West Sussex Mind (www.westsussexmind.org) is a local mental health charity supporting children, young people and adults across West Sussex. It has a Parenting Support Service offering a wide range of help to parents and carers of children (aged 5-18), with the goal of boosting their confidence in coping with and addressing their child’s mental health. The service provides peer support, training and a closed Facebook group.

If you are a single parent, the Single Parents Information Network (www.spinbrighton.uk) covering Brighton, Hove and Sussex may be able to put you in touch with others in similar circumstances. Gingerbread (www.gingerbread.org.uk), a national charity, also supports single parents with a helpline, advice and signposting to local groups.

Nationally, Contact (www.contact.org.uk) offers a wealth of information, advice and help for parents of disabled children as well as a helpline. They host an online forum which you can access from their website, enabling families affected by disability to get support by speaking to others about the issues affecting them. See National Directory for details.

The parenting websites www.mumsnet.com and www.netmums.com also have forums with devoted SEND areas where you can chat to other parents.

Training for parent-carers

Aspens deliver the Autism Central South East Hub Peer Education Programme in Sussex, which is co-delivered by autistic people, carers and families. They deliver workshops on a range of subjects including autism and eating, autism in women and girls, self-harm, sleep and toileting. For further information, visit www.aspens.org.uk/autism-central-south-east-hub.

Citizens Advice in West Sussex delivers webinars on DLA and PIP for parent-carers. For further information, visit www.advicewestsussex.org.uk.

Family Learning Team (WSCC): at the time of writing, the Family Learning Team are developing a number of SEND-friendly workshops and courses on subjects like autism awareness, boosting your child’s self-esteem, family resilience, mindfulness, anxiety and wellbeing. These will run alongside a number of already established workshops and groups, including a communications club in Horsham for families of children with speech and communication challenges. For further information, visit www.westsussex.gov.uk/education-children-and-families/adult-learning-service/family-learning.

Reaching Families provides online training on a wide number of subjects including anxiety in children; behaviour; benefits (including DLA, PIP and Universal Credit); SEN Support at School and EHC Needs Assessments and Plans; neurodevelopmental issues and wellbeing workshops. There is also a SEND Foundation Course that offers an introduction to SEND and the key issues parent-carers encounter as their children grow. For further information, visit www.reachingfamilies.org.uk/training.

The Sussex Child and Adolescent Mental Health Services (CAMHS) website hosts pre-recorded webinars on a range of conditions and topics around mental health linked to SEND, including ADHD, autism and anxiety. For further information, visit www.sussexcamhs.nhs.uk/resources/resources-for-families-carers-and-professionals/parent-and-carer-workshops.

West Sussex Mind Parenting Support Service also offers free webinars, e-learning courses and talks by experts-by-experience. They cover a wide range of topics relating to children and young people’s mental wellbeing, such as anxiety, aggressive behaviour, school avoidance, self-harm, LGBTQ+ awareness, and autism and mental health. For further information, visit www.westsussexmind.org.

West Sussex Parent Carer Forum deliver workshops and information sessions with representatives from various teams within the local authority and NHS. They also deliver a regular workshop on Wills and Trusts. For further information, visit www.wspcf.org.uk.

Support from professionals

Several statutory and professional services run by West Sussex County Council (WSCC) or health and social care offer valuable support for parent-carers needing help and advice.

Family Hubs

Family Hubs (www.westsussex.gov.uk/familyhubs) offer a range of information, advice and support to parents, families and young people as part of WSCC’s Early Help services (see below).

At the time of going to press, there were 12 Family Hubs in the county, all offering drop-in support from Monday to Friday: Adur East (Shoreham), Adur West (Lancing), Arun East (Littlehampton), Arun West (Bersted), Chichester, Crawley Bewbush, Crawley Broadfield, Mid Sussex (Haywards Heath), Horsham (The Needles), Worthing Central (Library), Worthing East (Lyndhurst Road) and Worthing West (Durrington).

Family Hubs typically offer information, advice and guidance on the following, but check online for up-to-date information about your local hub (see above).

▶    Finding childcare

▶    Applying for free childcare entitlement

▶    Finding local activities and support services

▶    Pregnancy and early child development

▶    Parenting

▶    Health advice for you and your family

▶    How to access local housing services

▶    Crisis support, such as emergency access to food and utilities

▶    Personal finance and the benefits you may be entitled to

The Integrated Front Door

The Integrated Front Door (IFD) is the contact point to use if you want to make enquiries or a referral to Early Help and/or children’s social care. It aims to provide a single, consistent point of access to advice, guidance and decision-making about the right level of help needed to keep each child safe or achieve change as part of an early help response.

To contact Integrated Front Door, call 01403 229900. For out of hours enquires, contact the Emergency Duty Team on 0330 2226664. For further information, visit www.westsussex.gov.uk and search for Integrated Front Door. If you experience difficulty contacting this number, phone 07711 769657 (does not accept text messages). This will connect you to the duty social worker.

Early Help

Early Help focuses on giving each child the best start in life, by helping parents-to-be and families with children and young people. The aim is to work holistically with families as soon as possible, identifying and taking action to respond to problems before they become more difficult to reverse.

Early Help provides a range of support through its Dedicated Schools Team, Enabling Family Offer and Targeted Intervention, which is provided by a family support worker or key worker and provides direct, whole-family working on improving outcomes for children in need of help on a range of issues.

Early Help also delivers Enabling Families/Young People, which is a short, focused intervention where the parent-carer/young person can access up to five sessions with a family support assistant. Parent-carers and young people must be motivated to identify and work towards their chosen goals, exploring what is working well and the impact any current worries are having on the child/children. To access Early Help, contact Integrated Front Door (see above).

Kinship Care

For carers who are not a child’s parents but other relatives or friends, Kinship Care within West Sussex County Council can provide information, training, signposting, referral and peer support. For further information, visit www.westsussex.gov.uk/kinship-care/support/kinship-support-team.

The Family Information Service

The Family Information Service (www.westsussex.gov.uk/fis) in West Sussex works closely with Early Help and the Family Hubs to provide up-to-date information on a wide range of services in the county. Their website includes information, links and searchable databases of local activity groups, early years and childcare, education, post-16 support, and SEND information and services.

The West Sussex Local Offer

Provision of information via a ‘Local Offer’ of services for parent-carers and their children under 25 years who have SEND is a statutory requirement for all local authorities. The West Sussex Local Offer has a wealth of information about what’s on offer in the county. For further information, visit www.westsussex.gov.uk/local-offer.

Toy libraries, sensory toys and equipment

Some local libraries have toy libraries, with a wide variety of toys that can be borrowed by all families. See West Sussex Library Service in the Local Directory for links to help you find your nearest library, as well as the full range of services they offer.

As noted above, most Family Hubs also have specialist sensory toy libraries; for a list of these, go to www.westsussex.gov.uk/education-children-and-families/support-for-families/toy-libraries.

Social prescribing

Social prescribing connects people to activities, groups and services in their community to meet the practical, social and emotional needs that affect their health and wellbeing.

This might include connecting people to advice and support services, arts and culture, nature and physical activity, or work and volunteering.

The easiest way to access social prescribing is to ask your GP surgery for a referral. You can also self-refer in most cases, often via links from your GP surgery’s website. Upon referral, you’ll normally be linked with a social prescribing link worker, who will arrange an initial appointment with you to see which services or activities could be helpful, and to start planning how to access them over a few sessions.

Counselling and talking therapies

If you think you’d benefit from talking openly with one person about how having a child with SEND is affecting you, you may want to consider counselling. There are various kinds of service available in this area. Help may be short or long-term, free or paid for.

West Sussex Talking Therapies (www.westsussextalkingtherapies.nhs.uk) is the most significant source of free counselling, cognitive behavioural therapy (CBT) and guided self-help services in the county for people with anxiety and depression. They are open to anyone over 18 who is registered with a GP in West Sussex, via a referral from their GP or a self-referral from the website.

There are also a number of generic counselling services in West Sussex, some of which provide counselling at low cost or based on a client’s ability to pay. Worthing Counselling Centre (www.worthingcounsellingcentre.org) works in this way, as do the Arun Counselling Centre (www.aruncounselling.com), Chichester Counselling Services (www.ccs-counselling.org.uk), and With You in Mind Counselling (www.withyouinmindcounselling.co.uk).

Affinity Hub (www.affinityhub.uk) is a national online resource that signposts to emotional support, resources and counselling specifically aimed at parent-carers of children with SEND, which may also be helpful if you’re looking for a specific kind of counselling or talking therapy relevant to your needs.

Relationship counselling

Some of us have found that our challenges have brought us closer together as couples. However, having a child with SEND can put an additional strain on relationships. It’s harder to find quality time, and after a challenging day it’s all too tempting to retreat as emotionally you feel you have nothing left to give. If you’re beginning to see warning signs that this is happening to you, there are groups that can help. The charity Relate offers online or in-person relationship counselling at a range of locations in West Sussex at a subsidised cost.

Section one: Starting your journey

Survival strategies

As you’ve no doubt gathered by now, the road ahead may be bumpy at times. Getting the best for your child can take a lot of effort, but it can be done. Here’s a selection of our top survival tips for maintaining your sanity and getting the best outcomes for your child.

Managing meetings and paperwork

▶    Keep a notebook or diary – you’ll be surprised how much information you start to collect

▶    Note the date of any telephone calls you make and any letters you receive, and keep copies of anything you send

▶    Take notes during conversations, as you may need to refer back to them at a later date

▶    Start a file for copies of all the letters and reports you get about your child. Over time you will gather a lot of paperwork, but organising things as you go will enable you to find things quickly if you need them to, for example, make a Disability Living Allowance (DLA) application

On the phone

▶    Make sure you’re talking to the right person or persist until you get hold of them. Don’t be put off by someone being hard to reach

▶    Try to be patient – no one else is as emotionally involved as you are, but be prepared to be firm if necessary

▶    Always be friendly to receptionists and secretaries, and let them know how much you appreciate their help

▶    Get to know who’s who in the place you’re calling and go to the top if you need to

▶    Be specific – plan out what you want to say before you call

At appointments

▶    Take someone with you for support and ask them to make notes

▶    Ask the professional if you can have copies of any notes they make

▶    Don’t be afraid to ask questions, especially if you don’t understand what’s been said. If you’re still confused, ask again

▶    If English is not your first language, ask for an interpreter

▶    Be prepared for clinics running late by taking activities to occupy your child, or asking if your child can be seen before others who are more able to wait

▶    Choose who is present and say no if onlookers might make you or your child feel uncomfortable

▶    Have faith in your own experience – you know your child better than anyone else

Afterwards

▶    Follow up appointments with questions in writing if you think of them later on

▶    Ask when you can expect replies to any requests – make a note in your diary and follow it up if you haven’t heard by then

▶    Make sure you meet deadlines – it’s in your interests to think ahead

▶    Make sure professionals know if you’re unclear or unhappy about anything – a brief word or telephone call may be all that is needed to sort things out

▶    Let people know in writing if things start to go badly wrong – don’t wait until you’re in crisis

▶    Don’t feel bad about changing specialists if you don’t get on or feel their approach is wrong for you or your child

Looking after your child

▶    Remember, not every minute of your child’s time has to be filled with therapy – do things you both enjoy without feeling guilty

▶    Find out about your child’s condition – national organisations can give information, advice and support on the latest research

▶    Ask your support group to help. Remember, they’ve heard it, seen it, and been there before. They may be able to go to meetings or reviews with you, or write letters of support for you

▶    Explore financial help, and don’t feel embarrassed about asking for it – not all benefits are means-tested

▶    Ask other parents about their experiences – they will often be your best source of information

▶    Teach your child to be as independent as possible, as it will make your life easier in the long run

Looking after the whole family

▶    Try to do things as a family – it’s easy to concentrate too much on your child who has SEND and hard to strike a balance

▶    In the early days, or during a crisis, appoint someone outside the immediate family to be the contact person for news. Ask them to pass on messages and let people know when they can visit

▶    Don’t be afraid to take the phone off the hook and enjoy what peace and quiet you can

Looking after yourself

In addition to the advice and signposting in the previous chapter, here are some tips and reminders about how important your own needs can be. Self-care is essential when you’re relied upon by others, and it will safeguard you and the whole family in the long run.

▶    Don’t be ashamed to say, “I can’t do this any more.” Ask for help when you need it

▶    Find someone you get on with and trust who will listen and take you seriously

▶    Be selfish – if you go under, everyone will suffer. Put yourself first for once

▶    Find ways of pampering yourself – have a massage or some reflexology. It needn’t be expensive – some organisations provide cheap or free treatments for carers

▶    Be prepared to deal with well-meaning but insensitive comments sometimes, even from family and close friends. In time, you’ll find you get better at hearing what people mean to say

▶    Make sure any groups you join are supportive. If you come home feeling worse, it’s not worth it

Have an outside interest like work, a sport, or a hobby. Having somewhere to go where you’re treated the same as anyone else helps put things into perspective.

Section one: Starting your journey

Siblings and wider family

When your child is diagnosed with a disability, you may feel as if life has been turned upside down. The immediate focus tends to be on finding out more about the disability and making sure you put the right support in place to meet your child’s needs. But it is also important to make sure other children in the family understand what the diagnosis means and are given lots of support as they adjust to the changes.

There are many positives about being a sibling of a child with SEND. They often learn new skills, such as sign language or first aid, and feel proud of their knowledge and achievement. Yet it can also be a mixed experience. Throughout their lives, brothers and sisters share many of the concerns and worries of their parents, such as feeling isolated, needing information, concern for the future and the demands of caring.

As well as having lots of positive feelings about their sibling, brothers and sisters of children with SEND can experience a wide range of complex emotions:

▶    Siblings can feel lonely at times. It could be that they find it difficult to talk to anyone about their brother’s or sister’s needs or feel they can’t invite friends home. Siblings may spend more time on their own while parents care for their brother or sister

▶    It is a completely normal part of a sibling relationship to feel angry sometimes. Children can get angry if they have been hurt or had their possessions broken by their sibling, or if they can’t do something or go somewhere because of their sibling’s needs

▶    Embarrassment can be uncomfortable to experience, and it often goes hand in hand with feelings of guilt. People sometimes stare at people who are different, and some even make comments. Siblings can experience feelings of hurt and embarrassment in this situation and then feel guilty for having those feelings

▶    Siblings often worry about their brother or sister (especially if they have health needs), their parents, the things their parents are stressed about and what the future holds

▶    It is normal for siblings to feel sad at times. Sadness can occur because of particular events, such as their sibling being unwell and having to stay in hospital, or because their brother or sister isn’t like other brothers and sisters. Siblings may feel sad that they can’t always do the same things that other children and families do

▶    Jealousy and resentment are experienced by many siblings, regardless of disability. Sometimes, sibling children can have feelings of jealousy about the amount of time and attention that is spent on the child who has SEND. Resenting their brother or sister because of this is understandable, but at the same time it is something siblings should be encouraged to talk about

Parents’ time and attention

Often, siblings don’t get enough individual time with their parents. Parents of children with SEND have a lot to juggle and, as a result, siblings can receive less time and attention. Children can understand that their brother or sister needs more help, but it can still feel unfair.

Caring responsibilities

Many siblings help their parents to look after their brothers and sisters in a variety of ways. It may be that they supervise while parents pop into another room, help with feeding or drinking, or carry out household chores. It is a part of family life that people help and support each other. However, it is important that siblings are not carrying out too many tasks, and that they have time to do their school work and spend time with their friends.

Bullying

Sadly, bullying is common. Siblings can get teased or bullied because they have a brother or sister who is different. Siblings are often very protective of their brother or sister and can feel angry and sad when they are teased. Sometimes siblings may experience conflicted loyalties between family and friends, and take part in teasing the disabled child. Extreme feelings of guilt usually follow. Because of these experiences, siblings of disabled children can be more sensitive to others’ feelings.

Being hurt

Some children have brothers and sisters who may hurt them due to their additional needs. This is, of course, upsetting, and it can also be confusing and difficult for the sibling to understand. Regardless of the reason for the behaviour that challenges, when a sibling is hurt by their brother or sister it can be frightening, hurtful and distressing. Sibling children need their parents to explain what has happened and why, and to put strategies in place to avoid further incidents.

Missing out

It can be difficult for sibling children to have friends round to the home for practical reasons. Also, a child may not want to invite people as they may feel uncomfortable or embarrassed about their sibling’s additional needs. Providing care for a disabled sibling may impact on a child’s ability to complete school work, attend clubs or have one-to-one time with parents. There may be limited opportunities to go on family holidays and days out because of behaviours that challenge, accessibility issues or financial restrictions.

Out of the loop

Often, other children in the family do not receive accurate and age-appropriate information about their sibling’s condition. Without this knowledge, they may try to fill in the gaps themselves and make all sorts of incorrect assumptions. This can create feelings of self-blame and guilt. Providing siblings with the right information and answering any questions they may have should prevent some of those feelings and ensure that they feel informed and involved.

The future

What is going to happen in the future is a huge concern for parents, but it can be a worry for siblings too. The thought that they may be responsible for the care of their brother or sister in the future can be overwhelming, so it is extremely important that this is discussed as a family.

Ways to help

▶   Recognise and acknowledge their worries. Always take time to listen to any questions or concerns

▶    Find activities that siblings can do with their brother or sister

▶    Communicate. Keep them informed and up to date. Ensure that they have the facts and are not making assumptions

▶    Make sure siblings get one-to-one time with you

▶    Provide opportunities for siblings to meet their friends

▶    Limit the type and amount of care that the sibling gives

▶    Have a safe place for your sibling child’s treasured possessions if damage is likely

▶    Be consistent and as fair as possible

▶    Role-play can help as a way of rehearsing how to respond to teasing or bullying

▶    It is important that sibling children recognise and acknowledge their role in the family. Improving communication and sharing feelings will help with this

Young carers

Under the Care Act 2014, the needs of your other children as siblings of a disabled child should be considered. Support for young carers may include:

▶    Regular breaks from caring so they can spend time with friends and enjoy the same opportunities as other children and young people of the same age

▶    The chance to meet other young carers at local groups

▶    Helping the young carer to get more support at school or college

▶    Ensuring that the young carer has support from other adults in their life, and someone to talk to when things are difficult

▶    Help for young carers during transition and significant life events

To arrange for someone to assess what support is needed, contact West Sussex Young Carers by calling 01903 270300 or visiting their website (www.westsussex.gov.uk/education-children-and-families/young-carers). This service is for children and young people under 18 but you can find out more about it, including the detailed eligibility criteria, on their website.

The online platform e-wellbeing (www.e-wellbeing.co.uk) also has a section devoted to young carers and their mental wellbeing.

Super Siblings

Crawley-based Super Siblings (www.supersiblings.org) hold fortnightly support group sessions for siblings aged 6-8, 9-11 and 12-16. Children drive what the sessions involve but this typically includes a combination of arts and crafts, baking/cooking, life skills, science experiments, team building exercises and outdoor play. They also organise trips to the cinema, restaurants, bowling alleys etc. You can find more details on their website.

Grandparents and extended family

Relationships within a family can be difficult. When a child is born with or gets a diagnosis of SEND, it can add to the stresses and strains in those relationships.

Grandparents, along with other close family members, may go through the same cycle of emotions as parents: anger, grief, denial. Some individuals find it extremely difficult to come to terms with. It is important, however, to recognise the contribution that grandparents and extended family members can make in supporting you and your family.

Parents who have disabled children often face additional caring responsibilities and emotional demands, and this can result in feelings of stress. Support from close family is vital for parents in terms of adjusting to change and coping with stress.

Grandparents can play an important role by providing the family with practical and emotional support. Often, they feel that having a child with SEND in the family has given them greater understanding and compassion, and it can help to bring the family closer together. However, for some family members it can lead to feelings of being under pressure to offer help and support.

Extended family may not always understand your child’s additional needs. This can be a source of conflict, but it is vital that children with SEND have a consistent approach as difficulties can be avoided by everyone responding to the child in the same way.

Grandparents can play a key role in caring for children with disabilities so that parents can have a break or some one-to-one time with their other children. They can also support siblings by taking them out and offering them a break away from home.

Top tips for grandparents and close family

▶    Offer whatever support you can manage – don’t wait to be asked

▶    Follow the parents’ lead

▶    Listen and give advice if requested

▶    Focus on the child, not the diagnosis

▶    Read up on your grandchild’s additional needs

▶    Help with phone calls or by accompanying parents to meetings

▶    Be there, even if it’s just at the end of the phone

▶    Help with practical tasks such as cooking a meal or doing the shopping – it can make a big difference

Parent-carers can support grandparents and other family members by keeping them up to date with what is happening in the family and helping them to learn about the child’s additional needs via support groups, websites and Facebook pages.

Asking for help from family can be difficult, but doing this and being clear about the support you need can be a way forward. Sometimes, family members may wait to be asked as they may feel that they would be interfering if they offer help first.

Giving grandparents time and opportunities to get to know the child is so important. Having a close relationship with them can strengthen the whole family.

If grandparents or wider family are playing an active role in caring for a child with additional needs, parents might consider inviting them to take part in reviews, meetings, appointments or events at school.

Other sources of support

Local organisations

Contact details for all the organisations listed below can be found in our Local Directory.

▶    Aspens (www.aspens.org.uk) offer family activity sessions under their Short Breaks provision. For details, email childrenreferrals@aspens.org.uk.

▶    Chestnut Tree House (www.chestnut-tree-house.org.uk) runs activity days allowing siblings to meet other children or teenagers who also have a brother or sister with a life-limiting or life-threatening condition. Their therapists can provide individual support for siblings who are coping with having a very sick child in their family, or have been bereaved.

▶    Horsham District Council: Reaching Higher Project (5 to 25 years) (www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/reaching-higher-project) offers term-time weekly sports and arts courses for children and young people with additional needs and their siblings.

▶    Guild Care (Ashdown Children’s Centre) (www.guildcare.org/ashdown-club) offers half-day family play sessions for children with disabilities, their parents and siblings at weekends and during school holidays.

▶    Lodge Hill Centre (www.lodgehill.org.uk) holds family activity days at their accessible centre in Pulborough with a relaxed, friendly atmosphere, where everyone can enjoy outdoor and indoor activities with family and friends.

▶    Parents and Carers Support Organisation (PACSO) (www.pacso.org.uk) provides holiday clubs and family days for disabled children, young people under 25 and their siblings in Chichester and Arun.

▶    Social care (www.westsussex.gov.uk/social-care-and-health/social-care-support/children/contact-us-for-childrens-social-care-support) can assess the needs of all the family, including you as a carer and siblings of disabled children. Call the Integrated Front Door for children under 18. If your disabled young person is over 18, call the Adults’ CarePoint.

▶    Short Breaks for Disabled Children (www.westsussex.gov.uk/local-offer/information/care-and-support/short-breaks) runs holiday clubs, after-school clubs, buddy schemes and short breaks at home or in the community from a wide range of providers, some of which are open to siblings.

▶    Sussex Snowdrop Trust (www.thesussexsnowdroptrust.com) provides health care assistants to the families of sick children. They can spend time supporting either the child who is ill or their sibling.

National organisations

Contact details for all the organisations listed below can be found in our National Directory.

▶   Carers Trust (www.carerstrust.org) provides online support for all carers, including young carers.

▶   Contact (www.contact.org.uk) has information and resources, including a section about supporting siblings and a helpline.

▶   Kinship (www.kinship.org.uk) support any kinship carers – including grandparents, aunts, uncles and family friends – who step in to raise children when the parents cannot do so. They offer regular training and peer support, online guides, an advice line and information about supporting children with SEND.

▶   Sibs (www.sibs.org.uk) is the leading UK charity providing information, support and training on sibling issues for adult siblings, young siblings, parents and professionals.

▶   Winston’s Wish (www.winstonswish.org) provides support to bereaved children and young people under 25, along with their families.

Section two: Finding your way

Education

Education is a big part of family life for many years. If your child has SEND, there can be additional anxieties around finding the right placement for them and ensuring that they have the correct support in place to help achieve the best possible educational outcomes.

Some of us know from birth that our children will need additional support with their education but, for many families, their child’s additional needs will only become apparent once their journey through the education system has begun.

This chapter will outline the law around SEND, the types of support available to children with SEND, tips and advice on choosing the right type of setting for your child’s individual needs and options for further and higher education.

SEND law

If your child has recently had a diagnosis, it can feel overwhelming when you are faced with lots of jargon, especially when people start throwing around terms such as ‘the Code of Practice’ and ‘tribunal’. But many parent-carers find it empowering to familiarise themselves with the basics so they can make the right decisions for their child.

Showing that you know what the law says and what your child is entitled to can be incredibly effective in meetings, so we will open this chapter by giving you a brief overview of SEND law with links to the legislation, so you can read up on it if you choose.

If this feels too daunting, there are a number of organisations with resources that explain the law in simple and digestible ways. Many also have advice on tackling common problems, as well as template letters to use if you need to write to the local authority or your child’s education setting.

The Children and Families Act 2014

In September 2014, the Children and Families Act 2014 became law in England. This is ‘statute law’, i.e. a legal framework that is passed by Parliament. The legal rights of children and young people with SEND are set out in Part 3 of the Children and Families Act. To read it, go to www.legislation.gov.uk/ukpga/2014/6/part/3/enacted.

The SEND Code of Practice

‘[Local authorities and other organisations] must have regard to the Code of Practice. This means that whenever they are taking decisions they must give consideration to what the Code says. They cannot ignore it. They must fulfil their statutory duties towards children and young people with SEN or disabilities in the light of the guidance set out in it.’
SEND Code of Practice 2015, page 12.

You may also have heard people refer to the ‘code’, the ‘Code of Practice’ or, to give it its full name, the Special Educational Needs and Disability Code of Practice: 0-25 Years, which is the statutory guidance for organisations that work with and support children and young people who have special educational needs or disabilities. It sounds complicated but the code is what organisations such as local authorities, schools and health bodies must comply with. It’s a long document but you don’t have to read it all – you can just look at the parts that are relevant to you. It is especially useful for the EHC Needs Assessment process, as it explains all the steps and the timeline that must be followed. To look at the code, go to www.gov.uk/government/publications/send-code-of-practice-0-to-25.

Regulations and Case Law

There are two other parts to the legal jigsaw. The first is the regulations for SEND law. These are the Special Educational Needs and Disability Regulations 2014 and the Special Educational Needs (Personal Budgets) Regulations 2014, which contain detailed provisions, including time limits, that organisations must follow. For further information, visit:

Special Educational Needs and Disability Regulations 2014:
www.legislation.gov.uk/uksi/2014/1530/pdfs/uksi_20141530_en.pdf

Special Educational Needs (Personal Budgets) Regulations 2014:
www.legislation.gov.uk/uksi/2014/1652/data.xht?view=snippet&wrap=true

The final part of the legal jigsaw is case law. Where the law is ambiguous and a case has been brought to court, the judge’s interpretation of what the law intends can become part of the law for others to follow. This is known as ‘case law’. Often, lawyers bringing a case to court will use relevant examples of case law to strengthen their argument. The Council for Disabled Children compiles a Case Law Directory with updates on the latest judicial decisions affecting disabled children and young people, and those with SEN. For further information, visit www.councilfordisabledchildren.org.uk.

The Equality Act and schools

Under the Equality Act 2010, education settings have a duty not to discriminate against disabled pupils or prospective pupils in the way they provide education and ‘associated services’. This also applies to admissions to school and exclusions, so they must never treat your child less favourably than other children for a reason related to their disability. If they do treat a disabled child less favourably, they must prove that this was justified and there was nothing they could have done to avoid it. They also have to take reasonable steps to ensure that disabled children coming to the school will not be put at a substantial disadvantage compared to other children.

The definition of ‘special educational needs’ is not the same as ‘disability’ and can cover conditions we might not think of as disabilities, such as dyslexia or emotional and behavioural difficulties, if they cause a substantial and long-term adverse effect on the child’s day-to-day activities. It is worth noting that the areas covered by the duty not to discriminate are quite wide. They include school trips, after-school clubs, play and lunchtime arrangements and access to the school curriculum.

The Equality Act 2010 gives guidance to schools about what they should do, and includes examples of situations where a parent could use this law to protect their child’s interests. The Centre for Studies on Inclusive Education (CSIE) has more information about the Equality Act 2010 and education at www.csie.org.uk/inclusion/equality-act-2010.shtml, including a link to the full text of the Act.

Who can I ask for education advice?

There are many organisations offering parent-carers advice on SEND law and education issues.

The national charity Independent Provider of Special Education Advice (IPSEA) has a helpline and callback service for parents who need advice, as well as resources and model letters to send to local authorities and schools. It also offers training courses for parent-carers, professionals and schools, to help them understand the SEND legal framework. For further information, visit www.ipsea.org.uk.

IPSEA training courses incur a fee, so you may prefer to try Reaching Families’ free training on education first if you are interested in learning the basics. To get full contact details for IPSEA (and all the other national organisations listed below), see the National Directory.

Organisations such as Contact, SOS!SEN and Special Needs Jungle have a wealth of information on their websites, and Contact also has a helpline for parents. The Council for Disabled Children and the National Association for Special Educational Needs (NASEN) are other useful sources of support that offer additional resources and publications.

Locally, West Sussex SEND Information, Advice and Support Service (SENDIAS) supports families who have a child with SEND. They are an ‘arm’s length’ service, so while they are funded by West Sussex, any advice they give is impartial, confidential and free. They provide a range of services including a confidential helpline, information and resources related to SEN processes, and a small team of volunteers. For children and young people, they have dedicated resources on their website as well as young people advisers who can support and help young people to express their wishes. For further information, visit www.westsussexsendias.org.

Reaching Families offers a range of training and fact sheets focused on education. As well as a SEND Foundation Course covering the basic SEND law and frameworks, we also provide workshops on SEN Support at School and EHC Needs Assessment and Plans. For further information, visit www.reachingfamilies.org.uk.

Because education is complex and often problematic for parents, it’s important that you get independent help if you need it, especially if you are in disagreement with your child’s school or the local authority. If you are on a low income, you may be able to get free legal advice from a solicitor.

What educational support is available for very young children?

Most children with SEND under two years old can benefit from the facilities available for all very young children, such as parent and toddler groups, music groups and soft play sessions that can support their development. There are also a number of services, support processes and funding options that are particularly useful for families supporting children who may have SEND at the earliest stages of their development (0-5 or ‘early years’). Some children may need support for SEND at home or in informal settings before, or as well as, the support they receive from an early years provider.

Family Hubs

Family Hubs offer a range of information, advice and support to parent-carers and young people as part of WSCC’s Early Help services. There are currently 12 Family Hubs in the county, and they all offer drop-in support. Staff can help you find support and activity groups that can cater to your child’s specific age and needs, link you with health care partners or help you access Early Years childcare and Early Years Free Entitlement funding.

For families supporting young children with SEND, they can also offer specific support and signposting. Several locations also offer sensory rooms (which can be booked for free) and sensory toy libraries. Many offer occasional ‘fun activities’ or ‘SEND days’ in the school holidays. For further information, visit: www.westsussex.gov.uk/education-children-and-families/find-a-family-hub.

Early Help

If you haven’t been able to access the support your family needs via your local Family Hub or universal services, you can ask to be referred for additional support from Early Help in West Sussex.

Early Help focuses on giving each child the best start in life, by helping parents-to-be and families with children and young people. The aim is to work holistically with families as soon as possible, identifying and taking action to respond to problems before they are difficult to reverse.

Early Help provides a range of support through its Dedicated Schools Team, Enabling Family Offer and targeted intervention. The Enabling Family Offer is a short, focused intervention where the parent/carer/young person can access up to five sessions with a family support assistant. Parent-carers and young people must be motivated to identify and work towards their chosen goals, exploring what is working well and the impact any current worries are having on the child/children.

Targeted intervention is provided by a family support worker or key worker and provides direct, whole-family working focused on improving outcomes for children in need of help on a range of issues. To access Early Help, contact Integrated Front Door on 01403 229900. For further information, visit www.westsussex.gov.uk and search for Early Help.

The Family Information Service (WSCC)

The Family Information Service (FIS) in West Sussex works closely with Early Help and the Family Hubs to provide up-to-date information on childcare, support services and activities for the whole family. To look for activities and groups for young children, go to www.westsussex.gov.uk/fis and click on ‘Activities, groups and services…’. Then click on ‘family activities’ or ‘family support services’. This will open a search form where you can narrow the enquiry by a range of categories, including ‘SEND activities’ and ‘SEND support’.

Portage

The West Sussex Portage Service is a home-visiting educational service for very young children aged up to 3.5 years with significant support needs. Children who attend an early years setting for more than 30 hours a week, attend a specialist local authority early years setting or have received Portage from another service will not meet the eligibility criteria.

Portage works alongside parents, offering practical help and ideas to encourage children’s emerging skills, which include moving, learning, playing, being with people and sharing the routine activities of everyday life. Referrals can be made by parents or anyone else involved with the child (with parental consent). For further information, visit www.westsussex.gov.uk/local-offer/services/details/api/type/localoffers/view/portage-service-west-sussex.

Dame Vera Lynn Children’s Charity (DVLCC)

Based at the Chailey Heritage Foundation, DVLCC offers an early intervention service for families with children aged from birth to five years with cerebral palsy and other motor learning impairments.

Services include conductive education sessions, music therapy, speech and language therapy, swimming and outreach to family homes. For further information, visit www.dvlcc.org.uk.

Childcare funding for families

There are a number of schemes to help parents with childcare, including universal Early Years Free Entitlement Funding. This provides free hours of education and care for all three and four-year-olds and some two-year-olds who receive Disability Living Allowance (DLA), or have parents that receive certain benefits.

Working families meeting the criteria will be eligible for 15 hours’ free childcare for nine-month-olds, increasing to 30 hours for three and four-year-olds. From September 2025, working families will be eligible for 30 hours’ free childcare for children aged nine months until they reach compulsory school age.

Information on tax-free childcare and Free Entitlement Funding (plus an eligibility checker and updates on planned extensions to the scheme for working parents) can be found on the government’s Childcare Choices website at www.childcarechoices.gov.uk.

Inclusion support for Early Years providers

All childcare provision for preschool children should be inclusive and meet the requirements of the SEND Code of Practice 2015. West Sussex County Council (WSCC) provides advice, guidance and training for early years and childcare practitioners to enable children with additional needs to attend mainstream provision. Providers can request such support via the WSCC Family Information Service, who will link settings with specialists such as Early Years and Childcare Advisers (EYCAs) or speech and language therapists who can help practitioners develop expertise and make the necessary adaptations to support the learning and development of children in their care. This may include visits to settings before a child starts, to ensure that plans for their inclusion are in place.

Early Years Inclusion Funding

Where appropriate, Inclusion Funding may be made available to Early Years providers to support the inclusion and participation of children with severe/complex needs and/or a disability. For a setting to apply for the funding, the child must be accessing an Early Years Funded Entitlement place with them. Additionally, the provider needs to complete an Action Plan for Inclusion. Funding is also made available to supply specialist equipment to support a child’s inclusion where this is recommended by health professionals. Further information about Inclusion Funding in West Sussex is available at www.westsussex.gov.uk/business-and-consumers/information-for-childcare-providers/business-support/inclusion-funding.

Disability Access Funding

The Disability Access Fund (DAF) is also available to three and four-year-olds who receive DLA and Early Years Funding Entitlement. Early Years settings must identify children who are eligible. They can then apply to the local authority for a one-off annual payment to help them support the child and meet their individual needs. Payments are made directly to the Early Years provider. Current rates and up-to-date eligibility criteria can be found at www.gov.uk/get-extra-early-years-funding.

SEND Under Fives

If you have concerns about your child’s development, their behaviour or their learning you might want to have a chat with your doctor or health visitor. If your child is already at nursery or preschool, you could talk to staff there about your concerns.

If a professional feels that your child has or may have SEND, they must inform you and the local authority by making a referral to the SEND Under Fives support process, which aims to identify children who have SEND so they can be offered the appropriate support in their early years setting and for their school transition.

Various professionals are involved in helping children identified by SEND Under Fives, including those running the Healthy Child Programme, early years and childcare advisers, Portage, the Speech and Language Therapy Service and other health care professionals.

Only professionals can refer to SEND Under Fives, but parents must give consent for discussions to take place. In order to review your child, the views of those who work with you and your child will be sought.

Support in education: SEN Support

All mainstream preschools, schools and colleges are required to offer support to children who have special educational needs (SEN). For children with SEN, this is likely to be additional to the educational provision normally offered to children of the same age. The support that settings can provide from their own resources that are ‘ordinarily’ available to them is known as ‘SEN Support’.

This section sets out some of the strategies and resources used by schools to provide SEN support, ensuring that children get an education appropriate to their needs. For children with more complex needs, an additional level of support may be required under an Education and Health Care Plan (EHC Plan), which you can learn more about in the next section.

The graduated approach: Assess, Plan, Do, Review (APDR)

If it has been identified that your child has, or may have, special educational needs, your child’s key worker or schoolteacher will work with the Special Educational Needs Coordinator (SENCO) to gather information and find ways to help your child.

If you are worried that your child is not learning or progressing at any stage of their education, you should speak with their teachers or SENCO as a first step. Similarly, schools must tell you if they think your child has special educational needs and you should be involved in planning their support – as should your child, especially as they get older.

How much help and the type of help your child is given will be based on their individual needs, using a ‘graduated approach’. This is decided through a process with four action stages as follows.

▶    Assess – collect information from teachers, the child or young person and their family, and any external organisations that are involved

▶    Plan – teachers, the SENCO, the child and their family should agree on new interventions, support and the expected outcomes. The agreement should be recorded on the school’s systems and explained to the relevant teaching staff

▶    Do – the plan is put into practice. The child or young person’s class or subject teachers are responsible for checking whether the plan is working on a daily basis

▶    Review – the impact of the plan is reviewed by teachers, the SENCO, the child and their family. Good progress may mean SEN support is no longer needed

The idea is that the Assess, Plan, Do, Review (APDR) cycle keeps happening for as long as the child needs SEN Support, and if they do not make the expected progress, things should intensify. This may involve planning more or different support or seeking input from more specialist services available to schools for advice or more detailed assessment (see below). The level of support provided can gradually increase according to the evidence that this process provides.

Ordinarily Available Inclusive Practice (OAIP)

SEN Support can take many forms, such as a special programme of work, particular equipment, time with a teaching or learning support assistant on their own or in a group, or advice and extra help from external organisations, specialist teachers or therapists.

Expectations and effective strategies for what could ‘ordinarily’ be provided for a child or young person without the need for an EHC Plan have been set out in more detail by WSCC in their guide to Ordinarily Available Inclusive Practice. This is accessible via its Tools for Schools website at www.westsussex.gov.uk/tools-for-schools/oaip.

In line with the SEND Code of Practice, this guide outlines the reasonable adjustments that can be supported through ‘quality first’ teaching. It gives examples of tailored approaches and strategies that could be used by settings to support an individual child’s needs. These are organised according to the four ‘SEND areas of need’ identified in the code, namely: communication and interaction; cognition and learning; social, emotional and mental health difficulties; and sensory and/or physical needs. Although the guide is aimed at education professionals, it may be useful to help familiarise yourself with some of the interventions that could be put in place for your child as part of their SEN Support.

Individual learning and support plans

Parents should be involved at every stage of the graduated approach. A written record of the support to be given to your child and the outcomes it is meant to achieve should be shared with you. WSCC has developed a template for an Individual Support Plan (ISP), which it encourages schools to use. This includes space to record you and your child’s views about the support they are getting. It is available at www.westsussex.gov.uk/tools-for-schools/send-toolkit/individual-support-plan-isp.

Specialist services to support children’s learning

The local authority has a number of specialist services that offer expert advice and information to mainstream schools seeking further support with the graduated approach. Most of these services have a team of specialist teachers who can work directly with pupils but usually concentrate on helping the school staff plan and deliver the recommended support. You should always be informed by schools planning to discuss or refer your child for support with one of these teams. Full contact details are in the Local Directory.

The Autism and Social Communication Team (ASCT) provides advice, training and support to schools to promote the educational, social and emotional development of children and young people with autism or Social Communication Difficulties (SCD). With parental permission, the team accepts referrals from school SENCOs or head teachers. No diagnosis is required for ASCT support.

The Intensive Planning Team (IPT) works with children and young people who are at risk of their education placement breaking down and/or may need an independent residential school placement. The team is made up of professionals with expertise in education, health and social care. IPT works with the network of support around the child and family to identify creative ways to achieve good outcomes and develop positive, person-centred solutions, including the identification of alternative support and funding streams. They require the graduated approach to have been tried without success. Referrals are through professionals only.

The Learning and Behaviour Advisory Team (LBAT) offers support, consultation, advice and training to mainstream schools and academies around learning and behaviour difficulties affecting a child’s progress in schools. They work with schools to improve children’s educational outcomes and emotional wellbeing. Referrals can only be made by schools.

The Sensory Support Team (SST) works with children, families and schools to support and promote the inclusion of children with sensory needs, including hearing, visual or multi-sensory impairment. They provide a range of support, including: direct support to children in Early Years; providing advice and direct teaching in schools; supplying specialist technologies on an individual basis to improve access to the curriculum; and providing specialist advice and support during assessments.

Referrals can be made by professionals or parents but the team advises that if parents have a concern about their child’s provision, they should discuss it with their school or setting first.

The Educational Psychology Service (EPS) provides specialist advice around a child’s learning, wellbeing, and behaviour in their school placement. Referrals are made by the education setting, or the Special Educational Needs Assessment Team (SENAT), during the process of EHC needs assessment, planning and review (see the section on EHC Plans below).

Other services supporting school settings in West Sussex

There are several other services that schools can call upon for advice, practical support or assessment as part of the graduated approach. A complete list, including the specialist services noted above, is provided on the WSCC Tools for Schools website at www.westsussex.gov.uk/tools-for-schools/advice-and-support/services-supporting-schools-and-settings. It may be useful to have a look at this list when considering which services could be used to support your child.

Some of the key services that focus on providing support through school settings are listed below.

The Mental Health Support Teams (MHST) in Schools initiative, known as Thought-Full in West Sussex, is an integrated service across health and social care that supports schools with all aspects of mental health. They advise on the development of whole-school approaches to wellbeing, as well as offering signposting and liaison with external specialist services when needed.

Thought-Full offers one-to-one interventions of 4-10 sessions for children aged 5-18 with mild to moderate mental health issues, including difficulties with anxiety, sleep, eating and behaviour.

Referral is via the school’s Senior Mental Health Lead (SMHL), working with Thought-Full. Detailed information about the scheme and an information leaflet for parents can be found at: https://schools.westsussex.gov.uk/Services/6073.

The School Nursing Service runs screening programmes to pick up health-related issues at an early stage. They can also offer signposting and low-level interventions around issues such as incontinence, healthy eating and emotional regulation.

Early Help also has Dedicated Schools’ Teams that can be called upon to work collaboratively with schools and families within settings. All schools should have a ‘link worker’ who can provide them with additional and flexible support on a wide range of issues affecting pupils’ education according to need. Alternatively, schools or parents can make a referral via the Integrated Front Door.

The Fair Access Team (WSCC) offers advice and signposting to schools and parents in cases where a child is at risk of exclusion or has been excluded. They also arrange and support education for children who have health needs that impact their ability to attend school.

Education, Health and Care Plans (EHC Plans)

An Education, Health and Care Plan (EHC Plan) is a legal document that outlines a child’s special educational needs, what outcomes are wanted for the child and what special provision will be needed to achieve those outcomes. It is designed to be holistic, so it should also cover any health care and social care needs, and outline provision to meet those needs and work towards those outcomes. In this section, we will set out when you, your child or your school setting might consider applying for an EHC Plan, how to request an EHC needs assessment, what this process will involve, and what happens when an EHC Plan is agreed – or indeed refused.

What is an EHC needs assessment?

An EHC needs assessment is the process by which local authorities assess a child’s education, health and care needs. It is the first step to getting an EHC Plan. A parent, young person, school or college can request an assessment. The legal threshold to assess is low. The local authority must assess if it is of the opinion that:

▶    The child or young person has or may have special educational needs, and:

▶    It may be necessary for special educational needs provision to be made for the child or young person in accordance with an EHC Plan

The Code of Practice states the following:

“In considering whether an EHC needs assessment is necessary, the local authority should consider whether there is evidence that despite the early years provider, school or post-16 institution having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child or young person, the child or young person has not made expected progress. To inform their decision, the local authority will need to take into account a wide range of evidence, and should pay particular attention to:

▶    evidence of the child or young person’s academic attainment (or developmental milestones in younger children) and rate of progress

▶    information about the nature, extent and context of the child or young person’s SEN

▶    evidence of the action already being taken by the early years provider, school or post-16 institution to meet the child or young person’s SEN

▶    evidence that where progress has been made, it has only been as the result of much additional intervention and support over and above that which is usually provided

▶    evidence of the child or young person’s physical, emotional and social development and health needs, drawing on relevant evidence from clinicians and other health professionals and what has been done to meet these by other agencies, and

▶    where a young person is aged over 18, the local authority must consider whether the young person requires additional time, in comparison to the majority of others of the same age who do not have special educational needs, to complete their education or training. Remaining in formal education or training should help young people to achieve education and training outcomes, building on what they have learned before and preparing them for adult life.”

What about children without a diagnosis?

Some parents are under the impression that their child can only have an EHC needs assessment or plan if they have a diagnosis, but this is not the case. The support a child is entitled to is based on need rather than diagnosis.

Requesting an EHC needs assessment

A request for an assessment can be made by a parent, young person (if they are over 16), school or college. You can do this by contacting the Special Educational Needs Assessment Team (SENAT), who are responsible for co-ordinating the EHC needs assessment process.

IPSEA recommend making your request for an EHC needs assessment in writing, detailing why your child may have special educational needs and why they may need special educational needs provision through an EHC Plan. They have a template letter for making a request that you can download from their website. For further information, visit www.ipsea.org.uk/making-a-request-for-an-ehc-needs-assessment. Your request should be emailed to EHCNARequest@westsussex.gov.uk.

Schools and colleges will often have lots of experience of applying for EHC needs assessments and are normally happy to make the request with your support and cooperation if you don’t feel confident to do it yourself. You can also receive support from West Sussex SEND Information, Advice and Support service (SENDIAS).

Getting a decision about an EHC needs assessment

Once a request has been made to SENAT, the next step is for the local authority to decide whether or not to assess. When they receive the request, you will be given the name of a planning coordinator from SENAT, who will be responsible for your child’s case. They will be your key point of contact but are not the decision maker. Decisions are made on the recommendation of an EHC Needs Assessment Consideration Panel.

There are strict time limits for decision-making, assessment and final production of EHC Plans. The whole process, from request to final plan, should take no more than 20 weeks. The local authority has up to six weeks to decide whether to proceed with an EHC needs assessment. You can find detailed resources, including a timeline of what should happen and when, on the IPSEA website.

By the end of the six weeks, the local authority will send you their decision. If they have decided not to assess, you have a right to appeal – we have a section later about appeals to the SEND Tribunal. But first, the planning coordinator should contact you to let you know the decision. SENAT will also inform your child’s education setting of the decision and, where required, a meeting can be arranged to discuss it.

If you are considering an appeal, you might want to discuss this with your planning coordinator– they may refer your concerns to colleagues, to try to resolve things without the need for an appeal. It is also a good idea to go over the evidence that was supplied, to check that there is nothing missing from the information on which the decision was based.

Refusal to assess

If the local authority refuses to carry out an EHC needs assessment, they must tell you within six weeks of you making your request. Their decision letter must detail the reasons for their decision and include information on how to appeal to the SEND Tribunal, how long you have to appeal and mediation, should you choose this as an option before submitting an appeal to the SEND Tribunal.

You do not need to participate in mediation to appeal to the tribunal, but you do need a mediation certificate. You can request a certificate from the mediation service the local authority uses. If you choose to participate in mediation you must tell the mediation service and the local authority, who will then arrange the mediation session. This must happen within 30 days. If the mediation session does not result in the local authority changing its decision, you can appeal to the SEND Tribunal. You must submit your appeal within two months of the local authority’s decision not to assess, or one month from getting your mediation certificate.

IPSEA produces a pack on refusals to assess which you may find helpful. You can download this from www.ipsea.org.uk/refusal-to-assess-appeals.

How will an EHC needs assessment be carried out?

If it is decided that an assessment should be carried out, the local authority must complete this by week 16, and either issue a draft EHC Plan or tell you they have decided not to issue one.

The aim of the EHC needs assessment is to look at the outcomes that will enable the child to progress in their learning and towards adult life, then work out what education, health and social care provision is needed for the child to achieve those outcomes.

To make the assessment, the local authority must ask for advice and information from parents (or the young person if they are over 16), the school or education setting, health professionals involved with the child, an educational psychologist, social care agencies and anyone else you reasonably request.

Your assigned planning co-ordinator will arrange to meet you to discuss the assessment process, capture your views on your child’s needs and answer any questions you may have. If you are worried about attending a meeting, you can bring along a friend.

As well as giving your own views on your child or young person’s needs, you can submit your own private reports and advice. The local authority must consider all information provided by the parent or young person and share that information with other people from whom advice and information is being sought. If you have a private report that is more than two years old, the local authority may not consider it recent enough to be relevant.

Decisions about producing an EHC Plan and what happens next

If the local authority decides an EHC Plan is not needed they must write to you by week 16, explaining their decision, your right to appeal to the SEND Tribunal and the mediation process. The same steps of mediation and appeal that apply to refusal to assess also apply to refusal to issue an EHC Plan (see above).

The local authority should also provide written feedback about the information gathered during the assessment, including all the reports, as these can be useful for you and the school. There will also be a meeting to which you will be invited.

If the local authority decides an EHC Plan is required, they must send you a draft of the plan, together with copies of all the reports they have received. There is no fixed time limit for this, but it should happen by week 16 to ensure that the final plan is complete by week 20.

When the draft is issued you will notice that the section regarding placement does not name a school, as you have the right to request a particular school or type of school. The local authority must tell you where to find information about the schools and colleges that are available for your child to attend.

Checking and finalising an EHC Plan

You have 15 days to decide if you are happy with the draft plan. It is very important that you make use of this time to check it thoroughly. Does it describe your child accurately? Is it specific enough that any school could read it and know what your child’s needs are? Check that all the support identified in reports has been added to the provision section. Are you happy with the Personal Budget in the plan if you asked for one?

At this stage, you are entitled to request a meeting with your planning coordinator to discuss the draft plan. If you only want to make minor changes, you should be able to sort them out over the phone or by email.

The local authority usually asks for plans to be finalised within 15 days, but if you feel you need more time to think about the plan and take advice from organisations like SENDIAS or IPSEA, it is best to email your coordinator and say you need more time. Do not worry about doing this. It is important to ensure that you are happy with the plan, so you should not feel any pressure to finalise before you’ve had a chance to seek advice.

By week 20, the local authority should issue the final plan. This will name a school, and the amount and arrangements for a Personal Budget if you requested one. If you disagree with the final plan, you have a right of appeal about some sections.

If, for any reason, you find that the EHC needs assessment process for your child has been subject to delays in relation to the time-scales noted above, West Sussex SENDIAS offers specific advice about this. Their fact sheet about the Local Government Ombudsman (LGO) and making complaints regarding delays to EHC needs assessment can be found at: https://westsussexsendias.org/wp-content/uploads/2023/03/Ombudsman-Complaints-Factsheet-Mar-2023-1.pdf.

Person-centred planning

A key aspect of EHC planning is that the child or young person and their family should be at the centre of the process, and the local authority should have regard to their wishes. This is called ‘person-centred planning’, and it ensures that your child’s education gives them the best possible outcomes to prepare them for adulthood. You have the right to be with your child at all interviews, medical tests and appointments. If a professional wants to observe your child in the classroom, or talk to them on their own, they should tell you they are doing this.

What are outcomes?

An EHC Plan will develop a set of outcomes for your child to work towards. Outcomes should be ‘SMART’ – this means they should be Specific, Measurable, Achievable, Realistic and Time-bound.

The plan is broken down into different sections. It identifies a child’s aspirations (what they want), their needs, the provision (support) they’ll require in order to meet those needs and the outcomes that the provision will help them work towards and hopefully achieve. Some outcomes will be short-term. Others may be longer term, but broken down into smaller steps so that your child can make steady progress. For example:

▶    Thomas wants to have friends (an aspiration)

▶    Thomas has social communication difficulties (a need)

▶    Thomas will take part in a thirty-minute weekly social skills group (provision)

▶    By the end of the school year, Thomas will play with two friends at break or lunch time at least twice a week (short-term outcome)

▶    By the end of Key Stage 3, Thomas will be able to make and maintain appropriate friendships (long-term outcome).

These outcomes are SMART, because they are specific. They are measurable, as staff will be able to document if the interactions are happening. They are achievable and realistic, as they have been broken down into steps to help Thomas work towards the long-term outcome. They are time-bound, as we know when they should be achieved.

Personal Budgets

You have the right to ask for a Personal Budget as part of the EHC Plan. A Personal Budget is an amount of money assigned by the local authority to deliver parts of the provision set out in your child’s EHC Plan. It gives you the flexibility to choose which services and support to use in order to achieve your child’s outcomes.

What type of education setting might be considered?

Mainstream schools: most children with an EHC Plan will still be educated within mainstream settings. Indeed, some parents feel strongly that they would like their children to be educated at their local mainstream school, particularly if they have siblings attending as well. The right of your child to be educated in a mainstream setting is supported in law, in section 33 of the Children and Families Act 2014, which says that a child or young person with an EHC Plan must be educated in a mainstream setting unless:

1.       it is against the wishes of the child’s parent or the young person, or

2.       it is incompatible with the provision of efficient education for others, and the local authority can show that there are no reasonable steps it could take to prevent the incompatibility.

Specialist units/special support centres: for children whose needs are more complex, it may be more appropriate for them to be placed in a specialist unit within a mainstream setting. These are often known as ‘special support centres’ (SSCs).

More than 25 mainstream schools in West Sussex have specialist units that cater for children with specific needs such as autism, language difficulties, hearing impairments, specific learning difficulties or dyslexia. Children spend some of their time in mainstream classes and some in the unit or facility. You can find a list of West Sussex schools with special support centres in our Education Directory.

Special schools: there are 12 special schools in West Sussex, catering for a range of special educational needs and disabilities. There are schools for children with complex needs, mild to severe learning difficulties and social, emotional and behavioural difficulties. Most children at special schools attend full-time, but some may have a dual placement with time spent in a mainstream school too. For a list of special schools, go to: www.westsussex.gov.uk/education-children-and-families/schools-and-colleges/find-a-school-academy-or-college, or see our Education Directory.

Unless there are exceptional circumstances, a child will need to have an EHC Plan to be placed in a specialist unit or special school.

Independent placements: occasionally, a child may require a placement within an independent specialist school, e.g. if they have extremely complex social, emotional or mental health (SEMH) needs. Independent placements are costly and will only be considered if a child’s needs cannot be met elsewhere in the county. Placements may be out of county and/or residential. Some independent specialist schools are only available to children from Key Stage 2 (usually aged 7).

You will find a list of independent specialist schools in England and Wales that have been approved under Section 41 of the Children and Families Act 2014 to offer special schooling, and non-maintained special schools (NMSS) that have been approved under section 342 of the Education Act 1996 to offer special schooling, at: www.gov.uk/government/publications/independent-special-schools-and-colleges.

Requesting a particular school

You have the right to request a particular school or college if it is:

▶    a maintained mainstream, special or nursery school. This includes academies and free schools

▶    a further education or sixth form college

▶    a non-maintained special school – these are usually run by charities and approved under section 342 of the Education Act 1996

▶    one of the independent special schools approved by the Secretary of State under section 41 of the Children and Families Act 2014.

The local authority has to agree with this unless:

▶    it would be unsuitable for your child’s age, ability or special educational needs

▶    your child’s attendance there would be incompatible with the efficient education of others, or the efficient use of resources – meaning it would cost significantly more than an alternative school that the local authority thinks is suitable for your child.

For more on EHC Plans, naming a school and what the law says, go to www.ipsea.org.uk/choosing-a-schoolcollege-with-an-ehc-plan.

Tips for coping with the EHC needs assessment process

▶    Be polite but persistent

▶    Involve yourself as much as possible with the professionals dealing with your case. Don’t be afraid of them – they are normal people and not to be avoided

▶    Make a note of the names and contact information of the professionals dealing with the EHC Plan or writing reports on your child

▶    Make sure you are sent a copy of each advice note or report. Keep a file just for these

▶    When dealing with the local authority or professionals involved in writing reports, it is advisable to speak to them via email, so that you have a ‘paper trail’ of what was said and by whom

▶    If you do anything by phone, always take the person’s name, and make a note of the date of the call and what was discussed. If you are told something significant, ask for confirmation in writing, or send a brief email noting what was said or agreed

▶    Get as much help and advice as possible. Don’t be afraid to ask other parents who have been through the assessment process for tips. You can also contact organisations such as IPSEA, Contact or West Sussex SENDIAS for further advice

▶    Don’t forget, this is your child; you know them better than anyone. You need to hear what professionals say and consider all the options but be ready to stick to your guns if need be!

Annual reviews

Your child’s EHC Plan must be reviewed by the local authority every 12 months as a minimum. You should get at least two weeks’ notice of the meeting and you can take someone along with you if you wish. Your child should also be actively involved, in whatever way best suits them.

Annual reviews are usually held at the school. The other people who must be invited are the local authority planning coordinator and representatives from health and social care. Other people involved in working with your child, including private practitioners, can be asked too.

Not everyone attends the annual review, but everyone who is relevant (including you as parent) should be asked for their advice and information about the child beforehand. This should happen two weeks before the meeting. It’s important that you have a chance to read these reports before the review. If you don’t get them in enough time, you can ask to postpone the review.

The school usually arranges the annual review meeting and reports to the local authority afterwards to complete the annual review process. The meeting must focus on your child’s progress in meeting the outcomes in their EHC Plan. In particular, are any changes needed in the support they get to help them achieve their outcomes? Have the child’s needs changed? Do the outcomes need updating? Within two weeks of the meeting, the school must send a report to the local authority. You should get a copy – check it over to make sure it matches what was said or agreed at the review. Within four weeks, the local authority must decide to do one of three things:

▶    Continue with the existing EHC Plan

▶    Amend or change the EHC Plan

▶    Withdraw or ‘cease to maintain’ the EHC Plan.

If the local authority decides to change the EHC Plan, there is a process with time limits that allows you to comment and appeal their decision if you don’t agree. It is important to understand that an EHC Plan can only be changed through the annual review process. If the local authority decides to withdraw the EHC Plan, you can appeal if you disagree. You can also appeal if the local authority decides not to amend the plan after the annual review and you think it should be changed.

Changing schools with an EHC Plan

If you want your child to change schools, you will have to ask the local authority to change the name of the school in your child’s EHC Plan. You have the right to ask for another local authority maintained school – mainstream or special – as long as the school you are requesting is like-for-like, and it’s been at least 12 months since you last made a request or your child’s EHC Plan was issued/amended.

The local authority has eight weeks to consider your request and you can appeal if you are unhappy with their decision. You don’t have the right to ask for a move to an independent special school but, if you feel this is what your child needs, you can request that the local authority reassesses your child.

Transfers between phases of education

When your child or young person is due to move from one phase of education to the next, such as from primary to secondary school, the local authority must review and amend their EHC Plan. The process must start within 12 months of the transfer and be completed by February 15 for primary school children and March 31 for young people transferring to college or post-16 education.

The review must look at whether to maintain, amend or cease to maintain your child’s EHC Plan. If the local authority decides to amend the plan, it must give details of how, and you will have at least 15 days to make comments on the changes and request a particular school. The plan must name the new school or college. The local authority must finalise the plan within eight weeks of sending you the proposed changes.

For a child coming to the end of primary school, the annual review in Year 5 should detail what they will need at secondary school, so you have time to look at the options. A review early in Year 6 should pull this together for the local authority to complete the amended EHC Plan by 15th February. This leaves plenty of time for liaison between the primary and secondary school, visits, organising staff and equipment etc. It also allows time for an appeal if you are unhappy, and for this to be resolved before September.

If you are concerned that your local authority has not completed the annual review in time for the transfer from one stage of education to another, IPSEA has resources and template letters to support a complaint at www.ipsea.org.uk/annual-reviews-in-advance-of-a-transfer-between-phases-of-education.

Preparing for adulthood in annual reviews

From Year 9 onwards, each annual review should focus on preparing for adulthood and look ahead at what will help the young person move towards things like employment and independent living.

Review or reassessment?

If you feel your child’s EHC Plan needs changing, you can usually address this at the annual review. However, there may be circumstances where parents think their child requires a new EHC needs assessment if, for example, they and the local authority are not seeing the child’s needs in the same way, or those needs have changed significantly. If you or the school request reassessment, the local authority has 15 days to say whether they agree. If they refuse, you have the right to appeal. If they do go ahead, the process and timescales are the same as for initial assessments.

Appealing to the First-tier Tribunal (SEND)

We have mentioned a few points at which parents have a right of appeal to the First-tier Tribunal (Special Educational Needs and Disability). This is often known as the ‘SEND Tribunal’.

If you don’t agree with the local authority, it is usually worth having at least one more try at resolving things locally. You can always ask for a meeting with your planning coordinator and the SENAT manager. You can also ask West Sussex SENDIAS for support.

Before you can lodge an appeal to the tribunal, you have to prove that you have discussed the possibility of mediation with a mediation adviser. Should you choose to go to tribunal without using mediation, you must send in a ‘mediation certificate’ with the appeal paperwork to show that this option has been considered.

For some issues you will not have to consider mediation – for example, if you only wish to appeal the school placement named in section I of the EHC Plan. For that, you can go straight to the SEND Tribunal.

Tribunal appeals

The First-tier Tribunal (SEND) is an independent body that hears parents’ appeals against local authority decisions on EHC needs assessment and EHC Plans. It also deals with some claims of unlawful disability discrimination in education.

There are strict timetables for making an appeal, and these differ for SEN appeals and disability discrimination claims. It’s vital to get advice as early as possible if you are considering appealing.

You can appeal to the First-tier Tribunal (SEND) if:

▶    The local authority refuses to assess your child after you or the school have requested this

▶    The local authority decides an EHC Plan is not needed after assessing your child

▶    You disagree with the EHC Plan sections that describe your child’s special educational needs, the special educational provision specified, the school or the type of school

▶    You disagree with an amendment to any of these sections

▶    The local authority refuses to reassess your child (although it’s important to note that if an EHC needs assessment has been conducted within the last six months, the local authority is under no obligation to reassess. A request to reassess after six months is treated as a new request)

▶    The local authority decides not to amend the EHC Plan after review or reassessment

▶    The local authority decides to cease maintaining the EHC Plan.

In these cases, the tribunal can order the local authority to change their decision.

The First-tier Tribunal (SEND) can make orders to change an EHC Plan’s education sections (B, F and I). It can also make recommendations to change the health (C and G) and social care sections (D, H1 and H2) of a plan. Although recommendations are non-binding, there is an expectation that they will be followed. If the relevant professionals decide not to follow the recommendations, they must write to the parents and the tribunal within five weeks to explain why. If you are unhappy that they have chosen not to follow the recommendations, you can complain to the Local Government and Social Care Ombudsman, or go to judicial review.

Going to tribunal is a stressful experience and not to be undertaken lightly. It is the last resort for parents who have been unable to resolve matters with the local authority in any other way. Parents who decide to go to appeal need to be well prepared and have access to the best possible advice and support. However, it is also worth remembering that over 90% of families who go to tribunal win their appeal.

While the tribunal encourages parents to represent themselves and will take care to treat them fairly, many have found it a daunting experience. If you cannot find someone to help you prepare your appeal, you can ask West Sussex SENDIAS for support, as all their advisers have legal training. Another option for support with tribunals is a small charity called Network 81. They will support parents or young people with appeals and even attend a tribunal with them if necessary. For further information, visit www.network81.org.uk.

Alternatively, you may think about instructing a solicitor – but this can be costly. If you take this route, make sure they specialise in education law. You may qualify for free legal assistance, so be sure to ask about this and the fees before going ahead. Coram Children’s Legal Centre and Child Law Advice may be a useful resource in this regard. The Child Law Advice service offers initial advice and guidance about education law, including SEND, while the Legal Centre provides help with accessing legal aid and representation. For further information, visit www.childrenslegalcentre.com.

If you feel your child has been discriminated against on the grounds of their disability, you should start by complaining to the head teacher and governing body of the school. If that does not resolve the matter, you can make a claim of unlawful discrimination to the First-tier Tribunal (SEND).

How to choose a setting for your child

When considering an education setting for your child, you will be looking for a placement where they will be able to learn and develop with confidence and independence. This section offers advice on the things to consider, and how to find the information that can help you find the right setting.

Choosing a preschool setting

If your child’s SEND has been identified early, this will be a key factor in deciding what type of setting will best suit their individual needs. However, with the right support in place, most children with SEND are able to go to local playgroups, preschools, nurseries and nursery classes in mainstream schools.

All playgroups and nurseries should welcome children with SEND but their facilities and levels of experience vary. You can find out more about childcare settings through the Family Information Service at www.westsussex.gov.uk/fis. See also our section above about educational support for very young children for more information about getting help to find and fund placements in early years settings for a child with SEND.

All childcare settings, including holiday playschemes and breakfast clubs, should have a special needs policy and a Local Offer document, as well as a member of staff who is the Special Educational Needs Coordinator (SENCO). Ask about this when choosing a place for your child.

Specialist preschools

If your child has complex needs that mean they would struggle in an ordinary preschool, you may find that a more specialist early years setting would suit them.

Chailey Heritage School, near Lewes, works with children from the age of three who have complex neurodisabilities, high health needs, sensory impairments and associated learning difficulties. In order for a child to be considered for a place at the school, the local authority has to request it, so seek advice as early as possible.

Ingfield Manor School in Billingshurst offers full or part-time places in its early years provision for children aged 3-6 years with neurological motor impairments, such as cerebral palsy, and associated medical and sensory needs. Children learn to develop movement skills, speech and communication, cognitive, self-help and social skills through the Early Years Foundation Stage Curriculum embedded within a Conductive Education framework. Teaching and therapy are provided by Ingfield’s multidisciplinary team in small groups with a high staff to pupil ratio. The local authority would have to agree to support and fund a place.

Preparing your child for the move from preschool to school

Children who have additional needs may need more support than their peers to help their transition from preschool to school. It is helpful if the family and professionals involved with the child have a meeting beforehand to discuss and plan for the child’s needs, to ensure that the transition goes as smoothly as possible. If your child was supported by SEND Under Fives, or already has an EHC Plan, preparations for a successful transition to school and advice on choosing the right school setting should have been a part of those processes.

To find out more, go to www.westsussex.gov.uk and search for ‘supported transition.’ You can also find general information for all parents about preparing your child for school on the council’s website by searching for ‘moving from preschool to primary school’.

How can I tell if a school is right for my child?

Parents often say that it can feel like there is very little choice if your child has SEND, particularly if their needs can only be met in a special school or unit. Whatever the school, perhaps the key question to ask is, ‘Can this school meet my child’s additional needs?’ With mainstream schools, this can be hard to assess.

All mainstream schools are expected to be inclusive but, inevitably, some have more experience or enthusiasm than others. As previously mentioned, schools are covered by the Equalities Act 2010, so it is useful to know that the duty not to discriminate also applies to prospective pupils and the admissions process. When you visit a mainstream school:

▶    Talk to the head and try to get an idea of the school’s attitude towards children with SEND – and, more specifically, to your child’s particular needs. Have they had a child with similar needs before?

▶    Look at the SEN Information Report and SEN Policy on the school’s website, which they must publish and review regularly. Have a look at their Local Offer page too

▶    Meet the school’s Special Educational Needs Coordinator (SENCO). Find out how much time they have away from teaching to devote to this role

▶    You may wish to find out how many children with SEND are on the roll. If a school has a significant number of children, they are more likely to be experienced. However, if there are many students and/or the SENCO’s role is part time, will he or she be spread too thinly?

▶    Try to find out what resources the school has for children with special needs, such as extra classroom helpers, learning support assistants and visiting specialists. The local authority gives schools extra money to support children with SEN, so ask the school about what extra support they offer

▶    Read the school’s last inspection report by OFSTED. You can find this at https://reports.ofsted.gov.uk

If you find that your family needs to choose a more specialist setting for your child, many of the same issues, considerations and approaches will be relevant, so it’s important to do your research and ‘get a feel’ for a school by visiting and talking with staff if you can.

If your child has an EHC Plan at preschool, the search for a specialist setting might happen at the start of their schooling. You might find yourself looking for a new school setting at a later stage, however, as your child’s needs become more apparent after an EHC needs assessment.

What should you expect from the school?

Your child’s school MUST:

▶    Provide the name of the teacher responsible for children with special educational needs, usually called the Special Educational Needs Coordinator (SENCO)

▶    Explain the way it decides which children need help and how it will be given, in line with the SEND Code of Practice 2015

▶    Describe how it will work closely with parents

▶    Publish a SEN Information Report annually for parents

▶    Publish an Accessibility Plan, including information about how, over time, it intends to increase the extent to which disabled children can participate in the curriculum, including improvements to the physical environment and the availability of accessible information. The plan must be in writing and be reviewed regularly

▶    Make reasonable adjustments to avoid putting disabled children at a disadvantage

School attendance, exclusion and ‘education otherwise’

There are many reasons why children with SEND might find it harder to achieve good attendance at their school setting or need additional support to access the full-time education to which they are entitled. This could be related to issues such as physical or mental ill-health, bullying, disruptive behaviour, or even sensory and social difficulties around school or home environments.

This can create additional stresses on parent-carers. Apart from the obvious unease you might feel about your child missing out on education, the impact of school absence or exclusion on a family’s working life, financial security and other caring responsibilities can be huge.

Concerns about the well-publicised measures available to local authorities in cases of ongoing absence, such as fines and prosecutions for parents, are also a cause of anxiety to many. If you are finding it difficult to cope with your child’s absence or exclusion from school, see the ‘Your wellbeing and someone to talk to’ chapter for advice about getting emotional or wellbeing support in addition to the signposts below.

It is essential, however, to be aware that the laws and associated guidance related to attendance place a strong expectation upon schools and local authorities to offer support on these issues first and foremost; sanctions should always be the very last resort.

Schools and local authorities must work with parents to identify the root cause of difficulties with attendance, particularly in cases where health issues or SEND are present or suspected. It may be that attendance issues are among the first indicators of a child’s SEND and could be the impetus for accessing SEN Support or an EHC Plan.

In this section we’ll briefly look at the responsibilities of various parties to promote and ensure school attendance, and provide some signposting for further support and advice about the law. We’ll also look at some of the common reasons why children might not be in school, and additional sources of support related to your child’s specific circumstances.

We’ll then provide an overview of the alternatives that could be made available to you and your child if they’re struggling in school, including ‘education other than at school’ (EOTAS), and the alternative provision that a local authority may be required to provide if your child is unable to attend due to illness or exclusion.

We’ll also consider ‘elective home education’ (EHE), which is when parents make a conscious decision to take responsibility for educating their own children. EHE should always be ‘chosen’ and never be something parents do as a result of pressure from a school or local authority, so it’s important to understand the implications of this if you’re considering EHE because of concerns around your child managing to attend school.

Responsibilities to support school attendance

Familiarising yourself with the responsibilities of all those concerned – including parent-carers, schools and local authorities – when dealing with a child’s attendance in education can be empowering if you are facing problems with this. Here we provide a basic overview and signpost to more in-depth information. According to the Education Act 1996, Section 7:

‘The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable: a) to his age, ability and aptitude, and b) to any special educational needs he may have, either by regular attendance at school or otherwise.’
www.legislation.gov.uk/ukpga/1996/56/section/7

This means parents are responsible for ensuring that their children are properly educated if they are of compulsory school age. However, they have the legal right to choose between asking the local authority to provide that education and providing it themselves.

If you have asked the local authority (LA) to organise your child’s education, it is obliged to find a setting for them. In most cases, this will be achieved through a full-time placement in a mainstream school or a more specialist setting if a child’s SEND requires it.

The provision, however, of an ‘efficient, full-time [and] suitable’ education must consider a child’s SEND as well as their age, ability and aptitude for learning; depending on the child’s individual circumstances, this may or may not mean regular attendance at school. According to Section 19 of the Education Act, if a child is too ill to attend school, or has been excluded, it is up to the local authority to ensure alternative provision or ‘education otherwise’.

When a child is registered with a school, your responsibility as a parent is to ensure that they attend their placement wherever possible: if you can prove a reasonable justification for your child’s non-attendance, or they were prevented from attending by reason of sickness or other unavoidable cause, you should not be subject to fines or prosecution. This is set out in Section 444 of the Education Act 1996, which explains if and when parents might be guilty of an offence for failing to secure their child’s regular attendance at school (available at www.legislation.gov.uk/ukpga/1996/56/section/444).

There are a number of things you can do as a parent to show you are helping your child to attend wherever possible, and avoid the risk of things escalating:

▶    Communicate as soon as possible with school about any absences (planned or unplanned)

▶    Raise any concerns you have around attendance with the school as soon as possible. Try to discuss and explain any barriers to attendance, so you can work together to make a plan for overcoming them

▶    Keep records of discussions, plans and any actions you’ve taken if you can

▶    Gather medical evidence of physical or mental health issues related to your child’s absence if and when you can. You do not need to provide such evidence for each absence but will likely need some medical evidence if it becomes a regular occurrence for your child that requires more sustained support from school and the local authority. If you think mental health issues (including school anxiety) are a factor affecting your child’s attendance, have a conversation with their GP as soon as possible.

▶    Engage as best you can with any support offered by the school setting, local authority or other services they have referred you to (such as Early Help)

▶    If you are finding it hard to engage with the support, try to keep channels of communication open so you can continue working together to resolve things

For more details about your responsibilities as a parent, the ‘Guide for parents on school attendance’ from the Office of the Children’s Commissioner (www.childrenscommissioner.gov.uk/back-into-school/resources-for-families) is very useful. Following the tips above will help you prove you are doing all you can to support your child’s attendance, while also supporting the school and local authority to take appropriate action according to their own responsibilities.

The responsibilities of schools and local authorities are covered in the government publication ‘Working together to improve school attendance’. At first glance, such guidance can seem a bit overwhelming. But there is a considerable emphasis on schools and local authorities trying to understand barriers to attendance while working with parents and their children to avoid and resolve such problems – see www.gov.uk/government/publications/working-together-to-improve-school-attendance. On the same website, you will also find a useful ‘Summary table of responsibilities for school attendance’ (including for children with medical conditions or SEND).

West Sussex SENDIAS also has a useful fact sheet series on school attendance issues – the first of which summarises everyone’s responsibilities – and these are available at https://westsussexsendias.org/leaflets-and-factsheets. They are helpful in understanding the support you can seek if your child is struggling to remain in school or education.

As a quick summary of the above resources, schools have a responsibility to:

▶    Work with families to maximise a child’s educational provision, ensuring that time spent by the child or young person in education is prioritised as much as possible while considering their particular needs

▶    Look at barriers to attendance and make suitable adjustments where needed. Plans and adjustments to alleviate barriers to attendance should be agreed by all parties, including parent-carers, and be reviewed regularly. Any such plans should be mindful of the child’s individual needs, and take school responsibilities for safeguarding into account

▶    Identify and inform the local authority of any students who are likely to miss more than 15 days of school in an academic year

▶    Determine with the local authority if alternative provision or ‘education otherwise than at school’ (EOTAS) should be provided to a child

▶    Local authorities have these responsibilities:

▶    Secure the specified educational provision in the child or young person’s EHC Plan, if they have one

▶    Secure suitable, full-time alternative education for those children of compulsory school age who, by reason of illness, exclusion or otherwise, may not for any period receive suitable education unless such arrangements are made for them (see Section 19 of the Education Act 1996). This duty applies to all children, whether they have special educational needs (SEN) or not

▶    Provide suitable alternative provision for education as soon as it is clear that a child will be away from school for 15 days or more, whether consecutive or cumulative. (In practice, local authorities will often defer the organisation of such alternative provision to the school at which the child is registered.)

▶    Liaise with medical professionals, if necessary, to arrange appropriate provision for the child; in doing so, they should not follow an inflexible policy of requiring medical evidence before making a decision about alternative education, and look at each case on its own merits

▶    Ensure that no pupil is left without educational provision

▶    In cases where parents have knowingly allowed or failed to take action around attendance, consider if any enforcement in relation to Section 444 of the Education Act should be sought

If you are concerned about the way your child’s school or local authority is dealing with their attendance, it’s important to seek advice. Again, see the West Sussex SENDIAS fact sheet series on attendance noted above for procedures about making complaints on these issues. They also have a range of guides, leaflets and a helpline which you can use for advice about whether or not your child’s school and local authority are acting within the law.

IPSEA also has helplines that can advise on attendance issues, and regularly updates its online guidance on exclusions, sanctions and ‘children out of school’. See especially: www.ipsea.org.uk/Pages/Category/exclusion-and-children-out-of-school.

Before looking in more detail at EOTAS, alternative provision and the Fair Access Team (which helps schools and local authorities to manage EOTAS), we’ll now consider some of the common issues affecting attendance, such as health issues, school anxiety, bullying, behaviours that challenge and exclusions, along with some resources that can help with those specific concerns.

Health issues and attendance

The health issues that can be an integral part of a child’s SEND, and any treatments required to manage them, may have a significant impact on school attendance. Similarly, unexpected periods of physical or mental ill-health can also result in regular or prolonged absence from school.

Where a child’s SEND has been established and they have an EHC Plan, this will often include measures to ensure that any ongoing health-related therapies may be accessed without any negative impact on the child’s education or attendance. If, however, you notice any significant changes related to your child’s health (such as a decrease in attendance or self-esteem, or an increase in symptoms, tiredness, behaviours that challenge or exclusions), then you can request an interim or emergency review of the EHC Plan. It could be that not all the needs or provisions within it are being met, or that amendments to the plan are needed.

If your child requires regular health interventions or days off for illness (either physical or mental) but is not on SEN Support or an EHC Plan, it’s important to discuss them with your child’s GP and school as soon as you can. The causes of regular absence could be related to as-yet unrecognised SEND, so you should consider asking the school to assess your child using the graduated approach.

Regardless of whether or not a child has SEN, there is a statutory duty upon schools under Section 100 of the Children and Families Act 2014 to support pupils with any medical condition. You can find the government’s statutory guidance about how schools should do this at www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3. This guidance sets out how schools should help children with medical conditions to stay in school by supporting them to manage their health needs within the setting.

In cases where the medical condition is not covered under an EHC Plan or existing SEN Support, schools should develop an individual health care plan for the child, setting out how their health needs will be met, including when and by whom, and whether any staff training is needed.

The expectations on schools include supporting children returning from illness to reintegrate, and making efforts to ensure they don’t fall behind in their education if they’ve been unable to attend.

Unavoidable non-attendance at a school setting for prolonged periods of time due to ill-health would require the school and local authority to consider education other than at school (EOTAS), possibly through a range of alternative provision.

When non-attendance is related to a physical issue, it can often be fairly ‘clear cut’ whether or not a child can attend school.

When non-attendance is related to mental health or emotional wellbeing, however, parents may find it harder to provide clear evidence or justification for their child’s absence, even though guidance in the law states that schools should treat absence due to illness (physical or mental) as ‘authorised’.

If your child is experiencing a mental health difficulty that is making it hard for them to attend school, government guidance at www.gov.uk/guidance/mental-health-and-wellbeing-support-in-schools-and-colleges provides a range of documents setting out expectations for how schools and parents can work together to manage such issues at an early stage. See especially ‘Mental health, behaviour and attendance’ and the related section on ‘Guidance for schools for when a mental health issue affects attendance’.

West Sussex SENDIAS also has a summary guide about mental health needs and attendance at https://westsussexsendias.org/health-needs-mental-health.

School anxiety or Emotionally Based School Avoidance (EBSA)

Most children experience worries about going to school at some point, and it is normal for things like exam stress or problems with a friend or teacher to cause a child or young person to say they don’t want to go.

However, when a child experiences extreme and persistent difficulty in attending, often as a result of anxiety, stress or fear about to going to school, this is commonly described as Emotionally Based School Avoidance (EBSA). You may be more familiar with some of the other terms that are used to describe this, such as:

▶    Emotionally Based School Refusal (EBSR)

▶    School Anxiety or School Refusal

▶    Anxiety Related Non-Attendance (ARNA)

▶    Emotionally Based School Non-Attendance (EBSNA)

Information produced by the Educational Psychology Service (EPS) in West Sussex about EBSA is available on WSCC’s Services for Education website at https://schools.westsussex.gov.uk/Page/10483. Here you will find guidance documents for schools and leaflets for parents and children explaining EBSA.

The leaflet for parents explains how quickly non-attendance associated with anxiety around school can develop and worsen; the longer they’re not at school, the harder it can be to think and feel positively about it (perhaps because of fears they will fall behind with school work or because they feel more relaxed at home), so the behaviour can become a vicious cycle. The EPS therefore encourages schools and parents to take action as quickly as possible and develop supportive strategies to help the child remain at school as much as they can.

If you notice signs of EBSA in your child – such as anxiety, fear or meltdowns associated with going to school, regular complaints of physical pain (such as tummy aches or sore throats) without signs of illness, or other anxiety symptoms like sweating or shaking – speak to their school without delay.

You may also find that teachers are concerned about your child’s engagement while they are in school, or that your child is regularly asking to leave early – both of these problems can be considered forms of EBSA too.

It may take time to fully understand the reasons why a child is anxious about going to school. It could be related to bullying, struggling with school work, the physical/sensory environment or wider social issues at school or in the home. We do know that children with SEND commonly experience more difficulties of this nature, and incidence of EBSA is increasingly common among them.

The Educational Psychology Service advises that one of the most supportive things you can do if you’re concerned about EBSA is to calmly listen to your child and acknowledge that their fears are very real to them.

They suggest reassuring your child that you will work closely with the school to make it a happier place for them, while emphasising how important (and positive) school can be with the right support. They also stress how important it is for all the adults at home and at school to agree a firm, consistent and supportive approach.

The school should be using West Sussex Guidance on EBSA, and keeping you regularly updated about what they’re doing in school to support your child. Simple strategies such as making sure there’s someone to greet your child when they come in to school, or to check in with them during the day, could gradually have a positive impact on your child’s attendance.

While many parents of children with EBSA desperately want to help their children return to school, there are others who feel that pushing children into an environment they find highly stressful might be the wrong approach. They also highlight how many children experiencing anxiety in school tend to ‘mask’ their distress until they get home, which can lead to disagreements between school and home about how a child is doing.

The parent-led support group Not Fine in School provide advice and resources to parents through their website and Facebook group. They advise ‘trusting your instincts’ about encouraging your child back into school, especially if you are concerned about their wellbeing or safety. For further information, visit www.notfineinschool.co.uk/home.

Young Minds also has an excellent resource on school anxiety and refusal, with tips about how to gently support your child to talk about their worries, and strategies to explore at school or at home to reduce their anxiety. For further information, visit www.youngminds.org.uk/parent/parents-a-z-mental-health-guide/school-anxiety-and-refusal.

West Sussex Mind’s Parenting Support Service has online webinars and peer support to help parents cope with EBSA. For further information, visit www.westsussexmind.org/training-courses.

West Sussex SENDIAS and IPSEA can both provide advice and guidance about the law if, for example, your school is looking to take measures against you for failing to get your child with EBSA into school, or it is failing to take sufficient action to support your child.

Bullying

Fear of being bullied and behaviours associated with bullying can affect a child’s attendance and achievement at school, either through school anxiety or as a result of exclusions.

Children with SEND are more at risk of bullying. Sometimes they may be more likely to bully others too. Bullying is very distressing for children and parents, but there are things you can do to support your child if you think they are being bullied. The first step is to talk to them and read the school’s anti-bullying policy. Then speak with the school about how they plan to support your child.

If your child is reluctant to talk to you about what is happening, try to ensure that they are aware of sources of emotional support they can access independently, such as Childline. See our section on mental health in the ‘Health and medical matters’ chapter, which sets out a range of organisations supporting children and young people’s mental wellbeing.

Early Help school teams and FindItOut services in West Sussex Family Hubs can also support children, young people and their families with these concerns.

A number of national organisations have resources for families on bullying, which you can find from a simple search on their websites. These include the Anti-Bullying Alliance (www.anti-bullyingalliance.org.uk), Contact (https://contact.org.uk), Mencap (www.mencap.org.uk) and the National Autistic Society (www.autism.org.uk).

If your child has been excluded for bullying others or being disruptive in class, it may be helpful to seek advice or training about how to support children with behaviours that challenge and how they can be related to SEND – see the resources and training from Reaching Families, Newbold Hope and the Challenging Behaviour Foundation.

Again, if your child isn’t already getting SEN Support or an EHC Plan at school, you may need to discuss with the school whether your child’s behaviour towards others is resulting from unmet needs, and how they can be better supported to remain in school.

Exclusion

It has been shown that children with SEND are at increased risk of being excluded at some point in their school lives. Exclusions can be fixed term (i.e. for a specific number of days) or permanent. The school must write to tell you that your child has been excluded, why, and for how long. There should also be a reintegration strategy in place before your child returns to school.

Sometimes, it’s only when your child faces exclusion that you realise they have special needs that are not being met at school. Schools are meant to take all possible steps to avoid the exclusion of children with special educational needs. This could include reassessing their needs or requesting an EHC needs assessment.

If your child is excluded, even for a very short period, it can be a very worrying time for both you and your child. There are options for appeal but you will need to seek advice, and we would suggest that you contact a specialist organisation such as Coram’s Child Law Advice service (www.childlawadvice.org.uk).

Informal exclusion

Fixed-term and permanent exclusions are both ‘formal’ exclusions. However, some parents find that schools ask them to collect their child early or send them home whenever there is a problem. Sometimes they suggest that the child only comes to school part-time on a reduced timetable. Although this is not called a formal exclusion, in practice it is excluding the child so it is known as an ‘informal exclusion’. This may be a sign that your child is not getting the support they need. It is also unlawful, so take action as soon as you can.

Contacting West Sussex SENDIAS is a good place to start. They have a very good resource on reduced timetables, setting out the very limited circumstances in which they might be considered lawful (e.g. if parents agree that this would be in the best interests of the child for a limited period, with clear plans to return to full-time education). For more information, visit https://westsussexsendias.org/reduced-timetables.

You may wish to speak to some of the organisations listed earlier in this chapter for advice, but in the first instance you should speak to the school and indicate that your child’s needs are not being met. You should also ask what support they plan to put in place to rectify the situation so your child can access education.

Education other than at school (EOTAS) and alternative provision

As we have seen, local authorities must provide suitable alternative education, or ‘education other than at school’ (EOTAS), to children who are not currently receiving an education for reasons of illness, exclusion or otherwise.

EOTAS is normally used in reference to when a child is getting their education somewhere other than in a school setting, but the local authority is still responsible for it. This is distinct from elective home education (EHE), which is when a parent-carer chooses to take responsibility for a child’s education away from the local authority.

If it becomes clear that your child will be absent from school due to illness or exclusion long enough to require action by the local authority, either you or the school can contact WSCC’s Fair Access Team (see Local Directory). They are responsible for guiding schools and parents through any process associated with fixed-term or permanent exclusions. They also manage the statutory commissioning of alternative education for pupils who are permanently excluded, or unable to access school due to an ongoing health need.

In cases of illness or exclusion, EOTAS is normally a temporary solution designed to support a child to return to a school setting in the long run (even if it’s not the setting they attended previously).

In situations where a child or young person has an EHC Plan, and the local authority agrees that EOTAS is necessary for their education (i.e. they may be unable to receive appropriate education in any school because of their particular needs), EOTAS can be written into their EHC plan and become a longer-term arrangement for their education. When EOTAS is written into an EHC Plan in this way, it is more commonly referred to as ‘alternative provision’.

It could also be the case that temporary EOTAS is put in place during a period of illness (including mental ill-health); during that time, you can apply for an EHC Plan that includes a longer-term strategy for EOTAS or alternative provision specially designed to meet your child’s SEND.

Sometimes, alternative provision may be used to complement or supplement provision in school, perhaps by building resilience that will support children to stay in their school placement in the longer term.

The exact arrangements for EOTAS will vary significantly depending on the child’s circumstances but could comprise any of the following, or a combination of them.

▶    Online schooling

▶    Tuition at home

▶    Hospital schooling

▶    Tuition or training at a specialist centre

▶    Therapeutic interventions

▶    Life skills training

West Sussex has numerous Alternative Provision (AP) settings that provide education for children who are unable to go to a mainstream school. The West Sussex Alternative Provision College (WSAPC) is the most significant provider, offering personalised education packages in a range of formats for children and young people across the county. Visit www.apcollege.co.uk for more information about what they can provide. All referrals to the WSAPC must go through the Fair Access Team at WSCC.

Some mainstream schools provide ‘alternative curriculum pathways’ and there are numerous organisations, often voluntary, that offer Independent Alternative Provision (IAP). This might include forest schools, animal therapies, fishing, cooking, vocational opportunities, online tutoring or face-to-face tutoring for learners who are waiting for an education placement or have been excluded. Some providers also offer educational strategies for children who are at risk of exclusion for presenting with behaviours that challenge.

Elective Home Education (EHE)

When parents decide to take responsibility for their child’s education instead of sending them to school, it is known as Elective Home Education (EHE). Doing this means taking on all responsibility for their child’s education and ensuring that it is full time, suitable and effective. Any costs involved in EHE must also be borne by the family, as no funding is available for those choosing EHE.

For parent-carers of children or young people with SEND, choosing EHE also means taking responsibility for their special educational needs. You should be aware that if your child is already placed at a special school, you will need consent from the local authority to de-register them from that setting. Otherwise, there are no additional restrictions for children with SEND, and you can decide to use EHE even if your child has an EHC Plan.

Altogether, this may be a significant undertaking, but for many parent-carers it can be a positive and active decision, resulting in good educational outcomes.

Unfortunately, many parent-carers get a sense that they are being forced into home educating – a situation perhaps best described as ‘non-elective’ home education. They may find themselves in this position due to informal exclusions becoming unworkable, concerns about being punished for failing to get their children to attend school if they are struggling with EBSA, or just an instinct that continuing to push their child into a school setting will be harmful to their long-term emotional and/or physical wellbeing.

If you recognise those feelings, and are considering EHE even though you don’t wish to or feel that it would not be in the best interests of your child, the advice is clear: EHE is unlikely to be the right choice for your child or family, and it would be ill-advised to de-register your child from local authority responsibility.

Revisit the advice about the responsibilities of the various parties at the start of this chapter. Engage with support, communicate with your school or local authority and, if you can, push for better SEN Support or an EHC Plan. If necessary, seek legal advice. Hopefully, continued engagement and advocacy for your child’s education will eventually result in the local authority supporting you to find the best solution for your child.

West Sussex SENDIAS has an excellent resource about parental provision of education, including advice about EHE, the implications of de-registering your child from school and definitions of ‘full-time, suitable and effective’ education. This may help you decide if EHE is something you really wish to try, or just understand what is involved if you’ve found yourself home educating without it necessarily being an active choice. For further information, visit https://westsussexsendias.org/parental-provision-of-education.

Facing measures around attendance, seeing your child in distress about going to school or struggling to engage with alternative provision can be intensely stressful. If you get to the point where EHE feels like the only option left, even if it’s just as an ‘interim’ measure, there’s a strong community of parents and organisations who can offer support (often finding each other via local Facebook connections).

Home Education West Sussex is a local Facebook group for parents in the county considering EHE, or currently home educating.

Education Otherwise gives support to parents wishing to home educate in England and Wales, including parents of children with SEND. For further information, visit www.educationotherwise.org.

The Home Education Advisory Service (HEAS) provides regular publications and access to an advice line for a registration fee. For further information, visit www.heas.org.uk.

Collaborating with other home educators can provide group educational and social experiences for children, or help you to find families close by who would like to share private tutoring if needed. Indeed, choosing EHE does not mean that you have to provide all of a child’s education directly yourself.

It would also be advisable to contact the Elective Home Education Team at WSCC. Even if you choose to take responsibility for your child’s education through EHE, the LA must still ensure that all children receive the full-time, suitable and effective education to which they are entitled.

The EHE Team aims to work collaboratively with home-educating parents through regular engagement with families. This may involve visits, calls or requesting parental reports, to enable families to raise any concerns or request advice and guidance regarding the education they are providing. For a range of information and guidance about what they do, and a parent information pack, visit www.westsussex.gov.uk/education-children-and-families/schools-and-colleges/elective-home-education.

Further education (16 to 19 years)

Further education (FE) is learning mostly for young people between the ages of 16 and 19. It includes school sixth forms, sixth form colleges and further education (FE) colleges. Some FE is open to older people who wish to catch up on their education, or do vocational and access courses.

Higher education is provided by universities and similar institutions that offer degrees and Higher National Diplomas (HNDs).

This section will examine those options in more detail, tell you about the kinds of additional support available in further and higher education and give you advice on how you and your child can make the best choices for their future.

It is important to remember that when your child reaches 16, their views, wishes and aspirations are recognised in law as the priority. If they need help to think through their options, they can get advice from West Sussex SENDIAS.

What options are there?

All young people are entitled to free full-time education until they are 19. A change to education law, called Raising the Participation Age, means that all children and young people have to stay in some form of education or training until their 18th birthday (there are some exceptions, such as those joining the armed forces, young people who become parents and those who are full-time carers for family members). However, this does not mean that they have to stay on at school when they finish Year 11. Options open to your young person include:

▶    Staying on at school, if the school has a sixth form

▶    Going to a sixth form college

▶    Going to a further education (FE) college

▶    Going to a special school sixth form such as Manor Green College or Oak Grove College, if they have complex needs

▶    Going to an independent special school or college, which could be residential

▶    Doing work-based training such as an apprenticeship

▶    Combining part-time accredited education and training with work or volunteering that lasts for more than 20 hours per week

▶    Some young people may want to leave education behind and look for a job, but remember they’ll now have to combine this with training until they’re 18

Regardless of whether or not your child with SEND has only been receiving SEN Support or has been on an EHC Plan as well, it’s important to encourage them to think about their aspirations for the future, how they might achieve them, and what support they might need to do this as early as possible.

If your child has an EHC Plan, from Year 9, their annual review should focus on preparing for adulthood. The National Development Team for Inclusion (NDTi) website has a useful set of documents about Preparing for Adulthood (PfA) (www.ndti.org.uk/resources/preparing-for-adulthood-all-tools-resources), including tools for EHC planning, annual reviews and setting good PfA outcomes. The chapter on ‘Planning for your child’s future’ also contains in-depth information about transition planning and annual reviews from Year 9.

By the time your child reaches the end of Year 11, their chosen path should be clearly mapped out in their EHC Plan (if they have one). All young people should have an offer of learning by the end of that academic year.

Getting the right paperwork in place: EHC Plans for further education

EHC Plans can continue if needed until the young person is 19, and in some cases up to the age of 25.

If your young person doesn’t have an EHC Plan but feels they need more support than their school or college can offer, they can request an EHC needs assessment. Considering an EHC Plan is a good idea, especially if you feel your young person will continue to need support until they are 25 years old.

If you feel you need further advice on SEND law and education, IPSEA’s website (www.ipsea.org.uk/pages/category/young-people-aged-16-25) has a section for young people aged 16 to 25. As well as advising you about SEN Support for over 16s, it also guides you through the EHC process, with model letters you can download and adapt as part of your application.

Thinking about post-16 options

Your young person’s Year 9 annual review kick-starts the decision-making process with the first steps in transition planning. The school should provide information on post-16 options at this point, and as your child moves through Years 10 and 11. There are many different courses available, so it is important to choose one that is at the right level for your child. Ask your child’s teachers for their input. College websites can also be helpful. The Educational Settings Directory has a list of further education settings that might be a good starting point.

16 to 19 study programmes

Study programmes are publicly funded programmes of learning for 16 to 19-year-olds (or 16 to 25-year-olds where the student has an EHC Plan). The programmes are based on a young person’s prior attainment and designed to help students meet their educational and career goals.

For example, if a young person is academically able, they may study for GSCEs or A-levels. Other students may prefer to take a different route and study for an apprenticeship or gain vocational qualifications.

Because providers have flexibility in the design, delivery and content of a study programme, it means that they can create highly personalised programmes for young people with a learning difficulty and/or disability.

But they still need to meet the Department for Education’s principles, which state that a study programme must:

▶    Provide progression to a level higher than that of the student’s prior attainment, although for students with a learning difficulty and/or disability this progression may be a broadening, generalising or consolidation of skills

▶    Include qualification(s) that are of sufficient size and rigour to stretch the student and are clearly linked to suitable progression opportunities in training, employment or higher levels of education. However, students with a learning difficulty and/or disability can be exempted from this principle altogether if their needs would be better met and progression better supported through structured non-qualification-based activity

▶    Require students who do not have GCSE grade 4 (what was grade C) or above in Maths and English to continue studying these subjects as part of their study programme. Students with a learning difficulty and/or disability need not have their English or Maths learning accredited but do need to have skills in those two areas included in their programme, as relevant to their individual needs and planned progression

▶    Allow for meaningful work experience related to the vocational area of the study programme, which develops employability skills and/or creates potential employment options. For a small number of students with learning difficulties or disabilities for whom employment is not an aim, even in the longer term, this principle can be disapplied, but study programmes should cover more creative employment opportunities for this group of students

▶    Include other activities unrelated to qualifications that develop skills, attitudes and confidence to support the student’s progression

Course levels and qualifications

This is a brief overview, but you can find out more about course levels and qualifications at the government’s website: www.gov.uk/what-different-qualification-levels-mean.

Entry level awards and certificates from the National Open College Network (NOCN) and the Award Scheme Development and Accreditation Network (ASDAN) are courses that focus on independence skills. They are available in a range of subjects that focus on independence skills and are designed for students who want to build their knowledge but may not feel ready to study for GCSEs. Students can progress from entry level 1 to entry level 3 if they wish, with each level having three sub-levels. Entry level 3 can help prepare students to access further courses such as GCSEs, NVQs and BTECs.

GCSEs and A-levels cover specific subjects like Maths, English, History and Science. These are sometimes referred to as ‘academic’ qualifications.

Vocational qualifications: NVQs and BTECs are sometimes known as ‘vocational’ (work) qualifications that teach job skills that are defined by employers. They focus on a particular work area such as engineering, floristry or childcare, for example.

NVQs (National Vocational Qualifications) can be studied by people in employment, or by school and college students who are on a work placement or working part time. NVQs don’t have to be completed in a set length of time. There are five levels – from level 1, which covers basic work activities, to level 5, which is designed for senior managers.

BTECs are vocational qualifications that are often studied by 16 to 19-year-olds, but some levels can be studied from age 14. BTECs focus on the skills and knowledge needed in different careers, with a focus on real-life application. There is a wide range of BTECs available, e.g. BTEC Firsts (equivalent to level 2 qualifications/GCSEs) and BTEC Nationals (equivalent to level 3 qualifications or 1-3 A-levels). To search the options, go to https://btecworks.com/student. Please note, however, that three of the BTEC courses are being defunded as part of the move to the new T-level qualifications that are being phased in (see below).

T-levels are vocational qualifications for 16 to 19-year-olds focused on practical subjects (such as construction, education and health care) that will result in a qualification roughly equivalent to three A-levels. They involve knowledge-based learning at school or college, alongside work experience through industry placements. In the long term it is planned that T-levels will provide the main technical or vocational alternative to A-levels in post-16 (level 3) education, along with apprenticeships. For post-GCSE students who’d like to study for T-levels but would benefit from additional preparation and support, there is also a T-level foundation year.

Apprenticeships combine practical training in a job with time for study, leading to work-based qualifications. They’re open to over-16s who are not in full-time education. Young people doing apprenticeships have a contract of employment, usually for at least 30 hours a week, and they work towards a vocational qualification. Visit www.gov.uk/become-apprentice.

Supported internships are another option open to young people aged 16-24 who have an EHC Plan. The internship is a structured study programme based primarily with an employer that aims to help young people achieve paid employment through learning in the workplace. Supported internships are unpaid, and last for a minimum of six months. Alongside the internship, young people complete a personalised study programme, which includes the chance to study for relevant qualifications as well as continuing with English and Maths.

If your young person is thinking of following vocational or work-related learning at school instead of a traditional GCSE programme, make sure the units and certificates they’ve achieved at school are taken into account for the post-16 course they choose. These students could go on to entry level programme life skills or vocational courses at further education colleges.

If a young person over 18 has missed out parts of their education – because of periods of ill health, for example – and doesn’t have traditional qualifications, they could do an Access Course to get into higher education. Access courses usually last for a year.

Tips to help you

▶    Find out what level your young person is working at before choosing a course, preferably in writing. Ask the school, or your child’s educational psychologist, if they have had a recent assessment

▶    Find out the level of the courses on offer and ask if appropriate support will be available for your child

▶    Young people who do not achieve English and Maths GCSEs at grade 4 (what was a C) or above by the time they are 16 are required to continue studying both subjects after the age of 16 alongside their other course(s)

Choosing a setting for further education

Sixth forms

‘Sixth form’ is effectively Years 12 and 13 (and Year 14, if required). There are two types of sixth form: those that are attached to a secondary school and sixth form colleges.

School sixth forms and sixth form colleges cater for 16 to 19-year-olds doing full-time courses. Typically, they offer a range of academic and vocational courses, such as A-levels, BTECs, entry-level qualifications and opportunities to take or resit GCSEs. Young people with special needs attending sixth forms will be expected to join mainstream courses, but there’s learning support available to help them do this. If your child has physical disabilities or sensory impairments, check that the access is suitable for them.

If your child wants to continue their education in a school’s sixth form, you’ll need to discuss this with the school in advance, but if the courses they want to do are on offer, the transfer should be simple. If they want to move to a sixth form at another school, contact the new school early on, as the school will have its own application procedure in Year 11. Sixth form colleges also have an application process – your school can tell you about this.

Further education colleges

Like sixth forms, further education colleges have a wide range of academic and vocational courses and there is a full application process when your child is in Year 11. Some further education colleges offer higher education courses too. They tend to have a broader range of vocational courses than sixth forms; these courses equip students for particular types of work such as engineering, childcare, catering, hairdressing or IT.

They also offer specific courses for students with special needs. These courses can run alongside mainstream classes for young people who have additional needs, or they can provide a stepping stone to more mainstream opportunities. It’s worth bearing in mind that ‘full-time’ courses at further education colleges are usually around 16 hours a week, so you will need to consider how your young person will fill the rest of their time.

Students can apply to go to any further education college. There will be extra travel costs if they opt for a college further from home, but it may be worth considering if the course is right.

Specialist sixth form education

For some young people with more complex educational needs, especially those with profound and multiple learning disabilities (PMLD) or severe learning disabilities (SLD) including autistic spectrum conditions, moving to a mainstream sixth form or further education college might not be appropriate.

You and your young person may want to consider one of the specialist schools with sixth form provision within West Sussex. There are also a number of independent specialist schools that educate children up to 19 years.

Specialist or independent further education colleges

If a young person’s needs can’t be met at a local college or sixth form, a specialist independent further education college may be an option. There’s a range of residential and independent further education colleges across the country that specialise in post-16 education for young people with special educational needs.

The Natspec website (https://natspec.org.uk) is packed with information about specialist further education and includes a search function so you can look for colleges, as well as useful information about applying for courses.

Getting a place at an independent further education college isn’t always straightforward. Funding needs to be agreed with the local authority, the Education and Skills Funding Agency and, in the case of a residential placement, social care. Fees are high and you’ll need to prove that the young person’s needs can’t be met in the mainstream sector by collecting evidence to show that their needs, as described in their EHC Plan, can’t be met by local state provision. You will also need to show that local colleges have been consulted before a specialist college can be considered.

The views of the young person are also central to the application. It’s beneficial to include their views in the evidence you submit, and you must show that they want to go to the college.

Getting funding for an independent specialist college is more complicated if you’re applying for a residential place. Funding guidance is updated every year. If the application is successful, funding will usually pay fees for up to three years (depending on the young person’s progress) and could require joint funding with social care and/or health services.

After 19, the Education and Skills Funding Agency will approach local health and adult social care services to share the cost of the ‘accommodation’ or ‘care’ component of the placement.

If funding is turned down, the local authority will advise on next steps and you can ask for the decision to be reviewed.

Information to help choose a setting for further education

Prospectuses

Sixth form and further education colleges have prospectuses that provide information about courses and facilities. You can ask for a copy of a college’s prospectus by calling their admissions office, but most have them available on their websites. If you don’t have internet access, FindItOut Centres/Family Hubs and West Sussex libraries provide it for free.

Inspection reports

Sixth form and further education colleges are inspected by Ofsted. You can read the reports at www.gov.uk/government/organisations/ofsted. They can be quite wordy but they give useful information on strengths and weaknesses, as well as indicating how establishments support students and measure quality.

School visits

Special schools and mainstream schools usually invite local colleges to visit and explain what they offer. Some pupils will also have done a ‘school link’ programme, where they may have gone to visit local colleges. If your young person wants to access a link course from Year 10, the school will need to arrange this with the college.

Taster days

Local sixth form and further education colleges offer taster days, open days and open evenings each year. Check their websites for details.

Other information

The National Careers Service website, with information and advice about education, training and work, is at https://nationalcareersservice.direct.gov.uk. Or you can speak to a qualified adviser by contacting their helpline on 0800 100 900. You can also speak to an adviser via their webchat service.

Questions to help you consider further education options

▶    What are my child’s needs and what do they like doing?

▶    What courses are available and will they meet my child’s needs?

▶    Will my child need to study Maths and English in addition to the main course?

▶    What are the advantages/disadvantages of staying at a school sixth form/opting for a sixth form college?

▶    What do local further education colleges offer?

▶    What apprenticeships or traineeships might be available to my child, and how do they work?

▶    How many hours a week is the course we are looking at?

▶    What will my child’s choice offer them?

▶    What course (or job) could they do after this?

▶    What support is available to help with the transition from school to the new setting?

▶    What additional support arrangements will be provided?

▶    When would my child get their detailed support plan and when could they meet support staff?

▶    When should we apply for the course?

▶    What reasonable adjustments will be needed to help my child with the application process, including the interview?

▶    Will my child need transport to and from the college and who will arrange it?

▶    Will my child be eligible for financial help to go to the college and how can I apply for it?

▶    If local choices aren’t appropriate and my child wants to consider an independent residential college, who will pay the fees and where can I find out more?

▶    What will happen after they finish the course?

Tips to help you

▶    Discuss education or apprenticeship and traineeship options with your child’s careers adviser

▶    Find out what level your child is working at and look for courses pitched at that level

▶    At sixth form, or sixth form college, students may not be timetabled to attend lessons for a full day five days a week, and class sizes vary. Check what support is available when lessons aren’t running

▶    Bear in mind that in a further education college, ‘full-time’ education is usually around 16 hours per week – if your child is not able to study or look after themselves independently in the free hours, how will you manage?

▶    Have a look at the colleges and ask about the extra and specialist support they can provide – it can vary between establishments

▶    Prospectuses don’t always mention provision for students with emotional or behavioural difficulties. If it is relevant to your young person, ask whether and how the colleges cater for this type of need

▶    If you think what is offered locally is unsuitable, consider looking at colleges further afield

▶    Identify who can help at each college and get their contact details

▶    Don’t assume your young person’s school reports and EHC Plan will automatically be forwarded to a college. Make copies yourself and send paperwork directly to the learning support coordinator or inclusion manager, to ensure that they receive them prior to your visit

▶    Take more copies of your child’s paperwork with you when you visit, along with other relevant information, to support your discussion with the learning support coordinator or inclusion manager at the sixth form or further education college

▶    Ask what previous students went on to do next

▶    Arrange to look around the college when the students are in lessons

Applying to sixth form and further education colleges

Your child’s school may manage the application process if you’re applying to a sixth form or further education college in West Sussex. Check with them.

If the school isn’t managing the process, make sure you get a prospectus for the institution you’re interested in. Most are available on their websites and will direct you to an online application process (although you may ask for an application form). Contact the college’s admissions department if you’re unsure how to apply. If your child hasn’t heard back from the college offering an interview date within a month of sending the application form, follow it up with Admissions.

Interviews and offers

Some colleges offer an initial interview that includes guidance for choosing the appropriate course, especially if the student is unsure or has unrealistic expectations before the course interview.

At the interview, the college fills in a report that is signed by the student and the interviewer. The report recommends a place on a particular course and the young person may be verbally offered a definite or provisional place at that point (depending on their exam results). A registration fee may be charged.

Preparing for the interview

Many parents worry about whether it is acceptable for them to go with their young person to the interview. Colleges often expect young people to discuss the details and arrangements directly with them. You could ask your child and be guided by what they want – if they feel they want you there to support them, that is fine.

Contact the Admissions department in advance to discuss the reasonable adjustments they may need to make for your child’s interview. There may be a group interview, a written task or another activity that is unsuited to your child, so you may need to discuss how the process can be made accessible to them.

Questions to ask before or at the interview

▶    Do tutors have experience or training in the young person’s special need?

▶    Will there be support for your child in class and at what level?

▶    Will learning support be in place from day one and how long will it be offered for?

▶    Will the same support staff be with the young person for the whole course?

▶    What size are the classes?

▶    What does the course involve – are there theory classes, essays or group discussions?

▶    What’s the timetable like for each day?

▶    How many hours of independent study are expected each week? Is there any support for this, such as a teaching assistant available to all students working in the library?

▶    What happens between classes? Is there any supervision?

▶    Where do students take their breaks?

▶    How are work placements arranged?

▶    Is transport to college or work placements arranged? If it is, how and when do we need to apply?

▶    Is there support if the young person is struggling emotionally?

▶    Will speech and language therapy support be available?

▶    What days of the week and times will the programme run?

▶    Will the course definitely run, even if only a few enrol?

▶    What other options are available if the course does not run?

After the interview

A copy of the report that was filled in at the interview will be sent to your young person, formally offering a place on the course. An offer may be made subject to getting certain GCSE results, but unconditional offers can be made for foundation level courses. Your young person will be asked to complete an acceptance form and return it within a given timeframe. Colleges arrange introductory days for students to meet tutors and other students –it’s a good idea to attend.

Support in further education

It’s helpful to know about the extra assistance offered to students when thinking about college options. Sixth form and further education colleges cater for young people with special needs, but the way they do it varies.

As with all schools, colleges need to take into account the Equality Act 2010, which says they must make ‘reasonable adjustments’ so disabled students are not treated less favourably or discriminated against. There is also a duty for all schools and colleges to produce a written accessibility plan that details how they intend to increase accessibility of the curriculum, environment and information for disabled pupils. This should be updated regularly (at least every three years) and is normally available online.

What kind of additional support is available in further education?

An EHC Plan will detail specific provision for your young person, but learning support is also available for young people who do not have an EHC Plan. They will be part of what is known as the SEN Support Group. Post-16 educational providers receive additional funding for these young people, so a wide range of support should be available from Learning Support departments. Types of support could include:

▶    Use of specialist software and equipment

▶    Reasonable adjustments to teaching, learning and physical access

▶    Help with literacy or numeracy for individuals or in small groups

▶    Sessions with mental health workers for learners with mental health difficulties

▶    Support for learners with dyslexia or dyspraxia

▶    Additional specialist teaching, e.g. for students with dyslexia, dyspraxia or dyscalculia

▶    Provision for specialist services

It is a good idea to ask the education provider what sort of additional support might be available, as this may vary from one setting to another.

Most colleges have student support teams who offer information and help on things like financial assistance, welfare services, accommodation, careers advice, health issues, study problems and personal difficulties. Colleges also have counselling services, which can help young people with personal matters.

What is not available?

It is unlikely that services like educational psychology, speech and language therapy or physiotherapy will be made available at mainstream further education colleges, unless they have been included in an EHC Plan.

Specialist colleges may offer some or all of these services, but you should talk to someone from the college’s Learning Support Team to discuss your child’s needs and find out what support the college can offer them.

Tips to help you get the right support

▶    If your child is staying on at a school sixth form, talk to the SENCO to see what support they will get

▶    Don’t assume that appropriate support will automatically be in place for the young person – make contact with the Learning Support Team at the college and arrange a meeting to discuss how the needs of the young person can be met

▶    Ask for confirmation of the level of learning support available to be sent to you in writing before the start of the course

▶    Ask if the college or sixth form has access to specialist support and, if not, whether they will buy it in

We can’t stress enough the importance of doing your own research. Professionals will tell you about special courses offered at different colleges, but it’s unlikely they’ll pass judgement about the quality of them. If you find out as much as you can about the courses your child is interested in and the support that is available for them, they will be more likely to work out well.

What if things go wrong?

Even with all the preparation in the world, things can still go wrong. You will have less contact with the college than you used to have with your young person’s school, so it may be harder to spot issues.

If there are problems, talk to staff at the college – they may be able to find a solution. Contact Learning Support as well as your child’s tutor.

If your young person is struggling with their course, you may be able to find other courses they can transfer to quite quickly, but it’s not always so simple.

If the worst happens and your child leaves the college, they don’t lose their right to further education and training up to the age of 19 – and if they have an EHC Plan, it can be free up to the age of 25, provided there is an educational objective.

Financial help with 16-19 education

All young people between 16 and 19 have the right to free full-time or part-time education, provided they satisfy national residence conditions, but additional financial help is available to some students. An overview of the funding options is below, but more detailed information can be found at www.gov.uk/guidance/16-to-19-education-financial-support-for-students. Most options are administered by the further education institution your child will be attending, so you should ask them how to apply if you think they are eligible.

Bursary funds

The 16 to 19 Bursary Fund provides financial support to help students overcome specific barriers so they can remain in education. There are two types of bursary.

The Vulnerable Student Bursary is available to defined vulnerable groups of students: students who are in care; care-leavers; students who receive Income Support or Universal Credit because they are financially supporting a dependant person who is living with them, such as a child or partner; and students who receive Universal Credit and Personal Independence Payment (PIP) in their own right. Education institutions must confirm that a young person meets one of these criteria.

There are also limited discretionary bursaries, which can be used to support students facing genuine financial barriers like transport, food or equipment costs. Colleges decide how much is paid and how often. Speak to Student Support Services or a tutor to find out whether your child is eligible.

Residential support schemes

There are also two schemes offering residential support. The Residential Bursary Fund provides financial help for students attending an institution that delivers specialist provision while the Residential Support Scheme provides financial help to students who need to live away from home to study because the same (or similar) substantial level 2 or level 3 qualification is not available within daily travelling distance. You can find further information on both at: www.gov.uk/residential-support-scheme/residential-bursary-fund.

Other financial help

Free meals are also available to students in further education who are in receipt of (or have parents in receipt of) a range of qualifying benefits. Information about this is available on the link above about 16-19 financial support. You’ll need to apply to your young person’s further education institution to access these.

There may be other funds available to help with the cost of fees, equipment, childcare or travel. Students don’t have to be on benefits to get financial help, but funds are limited and do run out, so you should apply as early as possible.

You’ll need to fill in forms and provide evidence and financial details, so make sure you read through the institution’s guidelines on financial assistance before making an application.

What happens after 18-19?

In the last year of formal education, decisions about your child’s future learning or working life need to be made. The school or college programme includes links with local options for education, care and supported employment.

Young people don’t have an automatic right to stay on in education after they turn 19 but there are options, and in some cases they may be able to stay in education until they’re 25. Contact provides a useful fact sheet for parent-carers, with an overview of the options and support available for 19 to 25-year-olds, at https://contact.org.uk/wp-content/uploads/2021/03/extra_help_in_education_for_19-25-year-olds.pdf.

You’ll need to get individual advice, so ask your child’s school or college for help. For some young people, this may be the point at which to consider a specialist further education college. Young people who have done A-levels or equivalent qualifications may want to move on to higher education.

Higher education

Going to university or a college that offers higher education gives young people over the age of 18 the chance to acquire more academic qualifications while continuing to build their independence and life skills.

The range of degree and HND or equivalent courses on offer is detailed in university prospectuses. You can also find lots of useful information on the Universities and Colleges Admissions Service (UCAS) website at www.ucas.com, including help and ideas about how to choose a course.

Further education colleges often provide some higher education options too, such as HNDs, higher level NVQs and degrees in partnership with universities. You will find lists of local colleges and universities in our Education directory, but students often move out of county to find a course that best suits their needs and interests.

Nowadays, more universities are also offering ‘distance learning’ or online options for studying to degree level. This can provide more flexibility in higher education and increase its accessibility for young people who wouldn’t otherwise consider studying away from home. Instead of attending lectures and seminars at a campus, all teaching, materials and support are delivered online, although exams may still need to be attended in person. Search ‘distance learning’ on the UCAS website for useful guides about how these courses work, searchable lists of universities that offer them, and key questions to consider if your child is thinking about this.

Once again, research is really important in helping your young person to make the right choice. Don’t encourage them to apply for a place until they’ve carefully reflected on the course and setting, as changing courses later can affect funding. If living and studying away from home, a visit to the university campus is essential.

For part-time or distance learning, you can apply direct to the university or college. For full-time ‘in-person’ courses, the application process is through UCAS.

Thinking about the kinds of support, both practical and financial, that might be available to your young person will also form a crucial part of any decision-making. These issues are covered briefly below, including information about applying for Disabled Students’ Allowance (DSA).

Inclusion and additional support in higher education

Support at university will differ from what you and your child might have been used to earlier in their education. A key difference is that the terms ‘special needs’, ‘additional needs’, ‘SEN’ and ‘SEND’ are typically replaced with the term ‘disability’, in line with the definition in the Equality Act 2010. Under this legislation, it is unlawful for universities and colleges to discriminate against disabled students. As with other educational settings, they have a legal requirement to make ‘reasonable adjustments’ so that disabled students are not put at a disadvantage.

Reasonable adjustments at university could include offering flexible seminar times, support for study skills or accessible computer equipment, premises or accommodation. Students with higher needs may qualify for a Disabled Students Allowance (DSA) to fund the additional costs of studying that arise from their disability.

All higher education institutions should also have an Accessibility and Participation Plan that sets out how they intend to improve equality of opportunity for students from disadvantaged backgrounds, including disabled students. The Office for Students, which regulates higher education providers, makes these documents public via their website, so it’s worth having a look when choosing a course and setting – visit: www.officeforstudents.org.uk.

If your child had an EHC Plan that was maintained throughout their schooling and further education, you should be aware that this will not transfer to university or higher education. This is essentially because reaching higher education is seen as an indicator of an EHC Plan’s success. The most recent version of an EHC Plan will, however, contain a lot of useful information about your young person’s needs, so it can be helpful to provide this to the university when starting to arrange support.

Getting the right support in place for higher education can take time, so it is advisable to tell a university or college about a disability well in advance of joining a course. Encourage your young person to be proactive about talking to universities about this, even before they start applying.

The UCAS application form has sections that can be used to share information about disabilities. This information is handled confidentially and will only be shared with university disability services, to organise reasonable adjustments and support. It is not made available to those making an academic judgement on an application. If your young person’s application is accepted, the university’s disability services will be aware of their needs and will get in touch to arrange ongoing support ready for the start of their course.

If your child is unsure about disclosing a disability to their university, Disability Rights UK have a dedicated Disabled Students Helpline and email address, and can provide further advice about preparations for higher education. They also publish a useful guide called Into Higher Education (available via their website), which addresses issues around disclosure and accessing support. UCAS also has a very useful guide about getting support for disabled students in higher education at www.ucas.com/undergraduate/applying-university/individual-needs/disabled-students#the-ucas-application.

It is important to remember that under data protection regulations (GDPR), universities can’t legally discuss an adult student or their support with parents or carers without the student’s consent. For that reason, it’s useful to have a discussion with your child well in advance about if and how they would like you to be involved in organising support for their higher education.

When visiting a university or college, speak with the disability services or advisers and take a list of questions to ask members of staff and students. What you want to ask will depend on your child’s disability or additional needs, but here are some examples.

▶    Are all the buildings physically accessible?

▶    Are there any particular facilities for disabled students?

▶    Are there any current students with a similar disability? If so, what type of support do they receive?

▶    Who will help organise support?

▶    Is there help to apply for additional funding if needed?

▶    Are methods of teaching and assessment appropriate?

▶    What will happen if there’s a problem after starting the course?

▶    Is specialist university accommodation available, for example rooms on a quiet corridor, or with accessible, private bathrooms?

Students’ Unions and other help

All universities and most colleges have a Students’ Union (SU) that’s affiliated to the National Union of Students (NUS). They will have welfare services and can be a useful source of information and support when you are considering applying to a university, or have been offered a place there. The Students’ Union office contact details should be included in the information you get on the institutions your child is interested in. Most universities will also have other support services for students, such as a student counselling service.

Funding for higher education

Going to university or college is a big investment, but students don’t need to pay any tuition fees up front. Instead, the fees are covered by a tuition fee loan. The highest amount an English university can charge for annual tuition fees is rising to £9,535 in the autumn of 2025. Student Finance England also provides maintenance loans, which can help with living costs like rent, food, books, transport and entertainment. These loans must be repaid, but only once a student has finished their course and is earning over a certain threshold.

The easiest way to apply for Student Finance support is online at https://studentfinance.campaign.gov.uk, or you can call their helpline on 0300 100 0607 (text relay: 18001 then 0300 100 0607). Your child shouldn’t wait until they have confirmed a place at university or college; they can apply for Student Finance even if they don’t yet know where they’ll be living or studying and update their details later. Finance applications normally open in March for undergraduate courses starting in September.

From January 2027, there will also be the opportunity to apply for a new Lifelong Learning Entitlement (LLE). This will provide the equivalent of four years of full-time funding for higher education through tuition fee loans, maintenance loans, and extra funding grants where eligible. It will enable people to use this flexibly over the course of their working lives. The aim is to help people train, retrain or upskill at times that fit in with their personal circumstances. For further information, visit: www.gov.uk/government/publications/lifelong-learning-entitlement-lle-overview/lifelong-learning-entitlement-overview.

Disabled Students’ Allowance (DSA)

Disabled Students’ Allowance (DSA) is a grant to help meet the extra study-related costs students can face as a direct result of a disability, ongoing health condition, mental health condition or specific learning difficulty. It helps disabled people study on an equal basis with other students.

DSA is paid on top of the standard student finance package and doesn’t have to be paid back. The amount your child will get depends on the type of extra help they need, not on your household income. It can be used for:

▶    Specialist equipment needed for study, such as computer software

▶    Non-medical helpers, like a note-taker (scribe) or reader

▶    Extra travel costs because of your child’s disability

▶    Other costs, such as Braille papers

For full-time undergraduate courses, you can apply for DSA via your online student finance account. Part-time and post-graduate students need to complete a DSA1 form. For full details on eligibility and how to apply, visit www.gov.uk/disabled-students-allowance-dsa.

As with all student finance, it’s best to apply for DSA as early as possible – you don’t need to wait until your child has a confirmed place at university. It can take six weeks to find out if your application is successful, and a further 14 weeks to arrange the necessary support.

There is a strong emphasis in higher education on having diagnostic evidence of a disability to access support over and above any standard reasonable adjustments. To get DSA, your young person will need to provide up-to-date evidence of their disability. If they last had an assessment when they were under 16, it may need updating. A copy of a letter from your young person’s GP or consultant may suffice. Alternatively, your young person and GP/medical professional can complete a Disability Evidence Form. For further information, visit www.gov.uk/government/publications/disabled-students-allowance-evidence-form.

If your child qualifies for DSA, Student Finance England will advise whether your child must attend an assessment centre to work out what help they will need. The centre will write a report outlining what is needed and send it to Student Finance England. The centre should also send a copy to your child.

Personal care and support in higher education

Remember – DSA only covers education, not care costs. If your child has personal care needs, you will need to consider how these can be met while they’re at university. If they had an EHC Plan before starting higher education, a transition plan should have been put in place to identify the most appropriate support for their needs. Any care package should be funded by the local authority where they’re ‘ordinarily resident’. Discuss this in advance with their care coordinator. If they’ve not had an EHC Plan but you think they will have care and support needs at university, you can apply for a Child Needs Assessment before they turn 18 via the Integrated Front Door or, if they’re over 18, contact the Adults’ CarePoint for an assessment of their care and support needs.

Section two: Finding your way

Health and medical matters

When your child is diagnosed, it is likely that you will have to juggle many appointments with different health services and professionals. Sometimes managing them and the paperwork can feel like a full-time job in itself, particularly as specialists tend to concentrate on just one area of your child’s condition.

But while they are the medical experts, it is important to remember that, as the parent, you are also an expert on your child. You spend every day with them, you know what treatments are being given and you know how they affect your child. You are probably the one constant figure in your child’s care, and you understand them better than anyone else. With this unique knowledge, you should expect to be treated by professionals as a respected and valued partner in all aspects of your child’s care.

Keeping track

You may find it useful to use your child’s Personal Child Health Record or red book to make notes about key episodes in your child’s health. During their early years, all contacts with health professionals should be recorded in the red book, and it helps if you take it to appointments so that you have a full record of who is involved with your child.

Understanding the NHS

Having a child with SEND can mean that you need to access a number of different health services, which may be in different locations within the county or further afield if your child needs specialised care.

In West Sussex, hospital or ‘acute’ services are provided by a number of different trusts. You can find out which trust runs your child’s hospital at www.nhs.uk/nhs-services. This will bring up information about the hospital, including the address, plus contact information for the relevant trust. It is worth remembering that, under patient choice rules, patients can choose which hospital they are referred to.

Sussex Partnership NHS Foundation Trust (www.sussexpartnership.nhs.uk) provides mental health, learning disability and neurodevelopmental services for children and adults. Sussex Community NHS Foundation Trust (www.sussexcommunity.nhs.uk) provides a range of community health services including child development centres, community nurses, a health visiting service, continence services, neurodevelopmental assessment, occupational therapy, physiotherapy, wheelchair and equipment services, and speech and language therapy.

Who’s who in health?

At the start of your journey, you may feel confused by the abbreviations and jargon people use to describe services that your child may use, such as SALT (Speech and Language Therapy) and OT (Occupational Therapy). The following list of ‘who’s who’ in health should help. Although long, it is not an exhaustive list.

Audiologists or clinical scientists (audiology): clinicians who provide assessment, diagnosis and rehabilitation of hearing and balance problems. This includes interventions such as hearing aids, which can reduce barriers to communication created by hearing loss.

Child and Adolescent Mental Health Services (CAMHS): an NHS service that aims to help young people up to the age of 18 who are finding it hard to manage their emotional and psychological health, and are suffering with acute, chronic and severe mental health problems. CAMHS has community teams of staff across the Sussex area that have expertise in working with children/young people with complex mental health difficulties and their families/carers. CAMHS staff also have expertise in working with children and young people from vulnerable groups and their networks.

Children’s and Young People’s Continence Team: a nurse-led team who provide support to children and young people experiencing constipation, soiling, day wetting and night wetting.

Children’s Community Nursing Team provides out-of-hospital care for children who are ill or require nursing to enable them to stay at home, school or another community setting. This includes children and young people up to 19 if they have SEND. The team provides practical advice and support to families and carers.

Clinical Child Psychologists diagnose, assess and treat emotional and behavioural difficulties and may offer counselling for families in difficulty.

Community Dental Service (Special Care Dental Service): sometimes children with disabilities or other conditions, such as extreme anxiety, are referred to a community dental clinic where the dentists have additional skills in treating them. They may also make home visits where appropriate.

Community Paediatricians work at Child Development Centres (CDCs), child health clinics and schools. They may also make home visits.

Consultants are senior doctors who have specialist qualifications in a particular area of medicine or surgery.

Consultants in rehabilitation medicine: specialist doctors who often lead multi-disciplinary teams to help people with complex disabilities. They work on treating and preventing symptoms and complications, and have specialist expertise in areas such as wheelchairs or orthotics and assistive technologies.

Dieticians: healthcare professionals who advise and work with people who have special dietary needs to promote wellbeing and prevent nutrition-related problems.

General Practitioners (GPs): family doctors.

Health Visitors mainly work with children under five but may keep in touch with parents of older children with SEND. They offer development reviews on children at various stages and can be the first to spot a problem that needs referring to a specialist. They often know about local services, support groups and benefits, and can support applications for respite care, rehousing, adaptations to your home etc.

Neurodevelopmental Service provides diagnostic assessment of neurodevelopmental conditions in children and young people. The service also provides ongoing management of Attention Deficit Hyperactivity Disorder (ADHD) medication for those with an ADHD diagnosis who meet the criteria for medication under 18 years.

Occupational Therapists (OTs) help children develop everyday skills such as feeding themselves, getting dressed, classroom-related tasks and playing. They will assess and/or treat children at an appropriate setting in the community such as your home, educational setting or local Child Development Centre, offering advice and/or treatment and recommending special equipment.

Ophthalmologists: doctors who specialise in the medical and surgical management of conditions of the eye.

Opticians: if it’s difficult to take your child to the opticians, you can ask any optician for a home visit. Glasses for children are no longer free, but there is a voucher scheme to help towards the cost. Ask the optician for details.

Optometrists: healthcare professionals who perform eye tests and prescribe corrective lenses or glasses to those who need them.

Orthoptists investigate, diagnose and treat difficulties with binocular vision and problems with eye movement, e.g. double vision, reduced vision and eye misalignments (squints).

Orthotists are qualified to design and fit ‘orthosis’ – surgical appliances like braces, callipers, footwear and so on. Orthotics deals with the support and bracing of weak joints or muscles.

Paediatricians: doctors who have specialist qualifications in all aspects of children’s health and development.

Physiotherapists work with children and their families to help develop children’s movement skills, function and mobility. They do this by offering advice and activities to help encourage important skills, as well as encouraging active play to help develop strength and balance.

Psychiatrists: doctors with specialist qualifications in diagnosing and treating people with mental health problems. Child psychiatrists work with children and young people.

School Nurses are based in mainstream schools and liaise with nurses in special schools. They undertake health assessments and offer advice and support on a number of health-related issues to parents, carers and teaching staff. When necessary, with parental consent, they can refer children to other NHS or partner services.

Specialist Health Visitors work with children with additional and complex needs and their families. They ensure that the correct support is given to the child by signposting to – and sometimes handling referrals to – other services. They can also help with sleep and behavioural issues. The service normally covers children aged from birth to eight years. However, exceptions can be made for children over this age. It can be accessed via early years settings, GPs or Child Development Centres, or parents can self-refer to their local heath visiting team.

Speech and Language Therapists (SALT) diagnose and treat problems with understanding, communicating and speaking. They can also help with swallowing and eating difficulties, and play an important role in providing assessment, intervention, support and training.

Referrals

Community Paediatricians

Some children will, from a very young age, be under the care of a community paediatrician who will usually be based in one of the county’s NHS Child Development Centres in Chichester, Crawley, Haywards Heath or Worthing. They will hold regular reviews with your child at home or at school, and are the first port of call for referrals to other specialist health professionals.

If your child isn’t under the care of a community paediatrician, your GP or health visitor is usually the person to ask if you think your child would benefit from seeing a specialist health professional. Occasionally, you may be referred by another professional. Some of the specialists listed above also accept self-referrals or may at least provide advice over the telephone. If you have to wait a long time for an appointment and things get worse, go back to your GP and ask if they can bring your appointment forward.

Your doctor (GP)

Even if most of your child’s treatment is at a clinic, it’s important to have a good relationship with your GP, as your child will inevitably have common childhood illnesses, which will usually be dealt with at the practice.

Most GPs will only have a few patients with SEND on their list. If your child has a very rare condition, it may be the first time the GP has seen someone with it. Your GP can also be an ally if you’re trying to bring forward a hospital appointment or find respite care, so it is worth asking for their help.

Supporting your child in appointments will help them to develop the skills and confidence needed to play as active a role as possible in their adult health care choices. When they reach 18 you will have to take a step back, if it is felt that they have the capacity to manage appointments by themselves and that is what they want.

Continuing care

Some children and young people remain under the care of paediatricians, who usually continue to see a child until they are 19 years old. Many children are seen regularly by their local NHS Child Development Centre, their local hospital, paediatricians, Chailey Heritage, special schools, local clinics or specialist centres further afield.

Child Development Centres hold regular specialised clinics and groups for young children with developmental difficulties. These are run by various health professionals including occupational therapists, physiotherapists and speech and language therapists, who offer ongoing assessment, support and therapy.

Chailey Heritage continues to offer a wide-ranging and highly specialised service for children up to the age of 19 who have complex needs.

Children aged four years or over may benefit from the Continence Service, which helps with the management of bowel and bladder conditions.

Children struggling with acute, chronic and severe mental problems may be seen by the Child and Adolescent Mental Health Services (CAMHS), which has teams in Chichester, Crawley, Mid Sussex, Horsham and Worthing. CAMHS may see existing patients until they’re 18.

Education, Health and Care Plans (EHC Plans)

Some children with an Education, Health and Care Plan (EHC Plan) have health provision like physiotherapy written into their plan. This should be assessed during the Education, Health and Care Needs Assessment (EHCNA). If it is then included in the plan, it should be monitored and reviewed during your child’s annual review by their community paediatrician or specialist health professional.

Rehabilitation services

The Sussex Rehabilitation Centre is situated in Brighton General Hospital and can provide artificial limbs and wheelchairs. More complex problems are referred on to the Rehabilitation Engineering Unit at Chailey Clinical Services.

There is also a special unit, Chailey Rehabilitation Service, for children with acquired brain injuries. They may go there from acute care at a hospital, and each child has a completely individualised programme.

Managing medical appointments

Assessments, appointments, consultations or visits by health professionals can feel stressful, worrying and tiring, particularly if you are given upsetting news. Once you are in an appointment, it can be difficult to remember everything you wanted to ask, and you may be trying to keep an eye on your child too. Sometimes it is only once you have left that you realise you have forgotten to ask something really important.

Tips for appointments

▶    Think ahead about the information you need from a consultation

▶    Taking a few minutes to prepare for each appointment can be useful to help you gather your thoughts and ensure you have remembered everything you want to cover. It can be helpful to make a list of what you want to discuss and questions to ask

▶    Make sure you have a pen and paper so you can take notes in the meeting

▶    If your child finds new places challenging, it may help to prepare them before you go. Try to find an information leaflet or web page with photos of the place where the appointment will be held, so they can see where they are going and the equipment they might see there

▶    In the meeting, note down the responses. It may take longer, but when you get home you’ll be more likely to have the information you need

Hospital treatment

Going to A&E

There are A&E departments at the Royal Sussex County Hospital in Brighton, St Richard’s Hospital in Chichester, the Princess Royal Hospital in Haywards Heath, East Surrey Hospital in Redhill, and Worthing Hospital.

In-patient treatment

In our area, most children who need hospital treatment go to Chichester, Redhill, Worthing Hospital or the Royal Alexandra Hospital in Brighton.

Sometimes, children are sent to specialist centres where they may spend some time before returning to their local hospital for ongoing care. London hospitals they may be referred to include St George’s Hospital, the Evelina (part of St Thomas’ Hospital) and Great Ormond Street. Alternatively, they may be sent to Southampton.

Children who are treated locally may have been seen by specialists at their local NHS Child Development Centre (CDC). Staff from each centre have plenty of contact with each other, and many of the nurses have years of experience of the conditions treated at their CDC. However, anything you can do to share your knowledge and help communication will make things easier for your child.

Preparing for a hospital stay

▶    Many hospitals have information or materials, such as websites or books, to help prepare your child

▶    Hospitals may also have specialist staff who are trained to help children and young people prepare

▶    Ask about staying with your child – children have the right to have their parents with them in hospital

▶    To help you share important information about your child with hospital staff, so they can understand their needs, many hospitals now have a ‘passport’ for you to complete. Ask about this when you receive the time and date of your appointment

▶    This website has more than 60 videos that help parents and children prepare for common hospital procedures such as blood tests, CT scans, X-rays, ECGs and EEGs: www.whatwhychildreninhospital.org.uk

During the stay

▶    As well as the ‘passport’ detailing your child’s needs, it may be worth having key information (e.g. ‘Hayley uses signs to communicate’) on a piece of paper that can be taped above their bed

▶    If it is important that staff ask closed questions and use simple phrases, make sure you have explained this to them

▶    If your child doesn’t use speech, you may need to teach staff some signs or how to use your child’s communication book

▶    You can ‘read’ your child better than anyone else. If you notice changes in body language, mood or pallor, this could indicate they are in pain, too hot or too cold, so be sure to alert staff immediately

▶    Be sure to tell everyone about any medication your child takes; some lower blood pressure, and new medications may be incompatible

▶    If your child is on regular medication, check who will administer it while they are in hospital. If you plan to do it, you will need to sign to authorise this. If hospital staff are going to administer meds, expect them to be taken away from you

▶    Don’t assume that staff know everything about your child’s condition, or that information has been shared between departments

▶    If your child is having an operation, ask if they can be first on the theatre list if you think they may find it hard to cope with going without food or drink, or they are likely to be distressed or confused

▶    Help your child stay in touch with friends and with school by email – returning to school will be easier if they miss it a lot. Most hospitals now have public Wi-Fi, so ask about this before their stay

▶    Many hospitals have a teaching service that can help your child to keep up to date with their studies

Help with travel costs

If you are on a low income, you may be able to reclaim travel costs to and from hospital. You will need to be able to provide proof that you are in receipt of one of the following benefits: Income Support, Income Based Job Seekers Allowance, Income Based Employment and Support Allowance, Universal Credit (if income is less than £15,050), Guaranteed Pension Credit, HC2 Full Help Certificate, HC3 Partial Help Certificate.

If your child is under 16, escorts may be paid for one parent or guardian attending the hospital appointment. If travelling by public transport, you will need proof of travel and a certificate attendance claim form completed by the department you attended. Car travel mileage is paid at 14p per mile for round trips. For further information, visit: www.uhsussex.nhs.uk/patients-and-visitors/patient-transport.

Preparing for health care in adulthood

Switching from child to adult services usually happens at 18 or 19. It’s important to find out what happens with the specific services your child uses and to plan ahead, as some things may change earlier. For example, if you manage your child’s online prescription requests, some GP surgeries suspend parental access to the account once the child reaches their early teens. If you think your child won’t be able to manage their own prescriptions, it’s worth telling the surgery to ensure that you can continue managing their medication for as long as is necessary.

From age 18, in-patient and out-patient care at hospital will usually be alongside adults. For acute health care, your child may attend adult clinics from 16, although some specialist consultants may continue to see a young adult after they are 18.

Health services are responsible for identifying whether a young person is likely to have ongoing health care needs and making sure those needs are met when they become an adult. They should ensure that there’s a clear process for transferring responsibility and information.

If your child has health needs, you’ll need to think about the switch from children’s to adult health services as part of their transition planning to ensure they get the support they need. If you have had a community paediatrician from a Child Development Centre (CDC) overseeing your child’s health needs, it’s important to know that once they reach 18 or 19, their care will be taken over by their GP.

The transition to adult health services

For many services the switch from child to adult services happens at 18, but this can vary. It’s important to find out what happens with the specific services your child uses and plan ahead. GPs see people of all ages, of course, but they will start to expect young people to see them independently from 16 or 17.

Community paediatricians can see a young person until they are 19. In-patient and out-patient care at hospital will usually be alongside adults from the age of 18. For acute health care, your child may attend adult clinics from 16, although some specialist consultants may continue to see a young adult after they are 18.

Child and Adolescent Mental Health Services (CAMHS) may see existing patients until they’re 18, although new referrals are passed to adult mental health services.

Children’s health services are free, but adults have to pay for some things like dental care and prescriptions. However, if your young person is in full-time education, getting benefits or on a low income, they may be eligible for free dental treatment, prescriptions, eyesight tests, vouchers for glasses, wigs, boots or other appliances and transport to and from hospital. For more information, go to www.nhsbsa.nhs.uk/check-if-youre-eligible-help.

Prescription prepayment certificates (PPCs)

If your young person has to pay for prescriptions and is on several medications, it may be worth getting a Prescription Prepayment Certificate (PPC). This allows you to have as many NHS prescriptions as you need for a set price. If your young person needs more than three prescriptions over three months, or 11 over the course of a year, it will be cheaper to get the card. For more information, go to www.nhs.uk and search for ‘prescription prepayment certificate’, or call 0300 330 1341.

Transition planning and the health care plan

Your child may have ongoing health needs that will need to be reviewed as you consider what help they’ll need in adulthood, so that it can be written into their EHC Plan. Other children may not have any particular health needs and you will just need to make sure their GP knows about them and their needs in good time.

If your child does have ongoing health needs, health professionals probably won’t be able to attend many – or perhaps any – of the transition planning meetings at school, but they can be asked to provide written advice. Let the school know who’s involved in providing health services for your child, so they know who to ask. New professionals working with your child may need to get involved in planning for transition.

From Year 9 onwards, annual reviews should include planning to maintain good health in adult life. Health professionals involved in the management and care of your child should provide advice in writing and, where appropriate, attend the Year 9 annual review. If your child has health needs that will continue into adulthood, the person who currently oversees their care should draft the first ‘health care plan’ following the meeting, and this must fit in with the EHC plan. They should advise on what services are likely to be needed and discuss arrangements for transfer to adult services with your child, the GP and you. Later, having obtained your child’s consent, they should make any referrals to adult health services and arrange the transfer of records.

If your child is also likely to have adult social care needs at 18, they should also have a transition assessment for that. It can be carried out alongside any health transition assessment.

As with all transition planning, the health care plan is not a one-off document – it should be changed and added to as your child moves through transition. It should be completed in your child’s final academic year, and may need updating again just before they leave school.

Encouraging independence

As parents, we’re used to looking after our children’s health and good at spotting when they’re unwell or in pain. You will find more about helping teenage children make choices and communicate their opinions so they can become as independent as possible as adults in Involving your child.

Some young people with complex health and social care needs will require help to express themselves. Others may have such profound needs that they will remain dependent on adults for ongoing care. But if it’s possible, letting others know that you feel ill or something hurts is an important skill to learn. It’s understandable if you want to keep a close eye on the health and care services your child gets as an adult, but encouraging them to understand that their feelings and opinions matter and should be heard is also important.

Young people communicating their health needs

Helping young people with disabilities, chronic illnesses or learning disabilities to discuss their health needs as much as possible will enable them to develop communication skills and self-confidence when speaking to health professionals. An early step may be to ask health professionals to direct questions to your young person instead of you.

You may need to help your child learn the right vocabulary or signs to talk about their body and health. One day they may want to let other people know where it hurts or feels funny without you being there to explain for them. Make sure they know when to share health information. It’s important that they understand the difference between a doctor asking them to talk about their health, when they need to tell them about any problems they are having, and someone asking them how they are as part of a polite conversation!

A word about the Mental Capacity Act and health

When a young person reaches 16, they are legally classed as an adult in terms of decision-making about their health.

The Mental Capacity Act 2005 covers your child’s right to make their own decisions if they have ‘mental capacity’ – including decisions about health and medical treatment. It also sets out how decisions should be made with and for them if they don’t have the capacity to decide for themselves. In these circumstances, once your young person is 16, a medical professional is likely to be the decision-maker rather than you. But they should still get the views of those close to the young person, unless it is a medical emergency.

Bear in mind that children under 16 can also be judged as being competent to make their own decisions about health care if they are seen to have the necessary maturity and understanding. For example, a GP or clinic could prescribe contraceptives in confidence to a 15-year-old who had asked for their parents not to be involved.

Confidentiality and medical records

The confidentiality of patients’ health information is enshrined in codes of professional conduct. Everyone has the right to have a copy of their medical records, and these should be presented in a format that the patient can understand. If the patient is under 18, anyone with parental responsibility can apply to see their medical records, but if the GP or doctor responsible believes they are able to make their own decisions about their health, they should check that they consent to this. Once a young person is over 18, you’ll always need a letter giving their consent or a ‘power of attorney’ to see their records.

If, for any reason, you are denied access to your child’s medical records or their records have been lost, contact Healthwatch for help (www.healthwatchwestsussex.co.uk).

Transferring medical records to adult services

Sometimes a young person’s medical records aren’t transferred to adult services in time for their first meeting, so the parent-carer has to go over their medical history at the first appointment. The benefit of this is that you’ll have the opportunity of a fresh start with a new service. It’s a chance to establish new relationships with professionals and put any past misunderstandings behind you. You’ll also be able to use past experience to explain your situation and say what your child needs, or help your child to explain what they need.

Young people: managing medical appointments

Assessments, appointments, consultations or visits by health professionals can be stressful, worrying and tiring. It’s common for healthy, fit adults to forget a lot of what has been said, and even more difficult for tired or anxious people. Bad news or painful information can come as a shock. It can feel difficult to ask the right questions to get the information you need. Even if you have lots of experience in handling this, you need to consider teaching your young person how to cope too.

How to be prepared

Being prepared for appointments with health professionals is important. It’s helpful to talk to your young person beforehand, when you both have a quiet moment, and write down the things you both want to discuss. You or your child could also choose a friend to go with you, to prompt you and remember what’s been said. Take a list of questions and note down the responses – it may take longer but when you get home you’ll be more likely to have the information you need. Then you can talk it over with your child, to make sure they have understood too.

Preparing can also be a positive opportunity to talk about issues together, and for your child to practise thinking through their options.

Tips for appointments

▶    Think ahead about the information you need from the consultation. Write down questions and involve your child as much as you can in this thinking process

▶    Your child’s worries may be different from yours, so check if there’s anything they want to talk about

▶    Is there a leaflet or website you can look at with your child so they can see where they are going and what equipment they may see there?

▶    Politeness, firmness, persistence and a good sense of humour will help if the medical professional doesn’t seem to ‘get’ what you and your child need from them

Sexual health services

Although it can be uncomfortable to think about your young person having a sex life, it is important to be informed and make sure they know what sexual health services can offer. They provide:

▶    Contraception, including long-term and emergency contraception

▶    Access to condoms

▶    Testing and treatment for Sexually Transmitted Infections (STIs)

▶    Psychosexual counselling

Details of sexual health clinics and access to other services in West Sussex can be found at www.sexualhealthwestsussex.nhs.uk.

Mental health services

The teenage years can be an emotional rollercoaster for young people. As parents, we know they’ll face the physical changes of puberty, but there are also psychological changes that will affect their behaviour and emotional wellbeing. Many teenagers become moody, self-centred or reckless, and most will also have times when they feel anxious or low.

Some local secondary schools and colleges offer counselling for young people. If your child is aged between 11 and 25 they can also get information, advice, guidance and referrals to other services from Find it Out, which is available via Family Hubs. They can offer up to five sessions with one of their team on whatever issues your young person needs help with. They can also involve the whole family if that is appropriate. Go to www.westsussex.gov.uk and search for Family Hubs for more information.

For some young people, mental health issues during the teenage years may become more serious later and, for a few, significant mental health needs may emerge. Persistent depression, high anxiety, serious eating disorders and really difficult or unusual behaviour are all good reasons to look for outside help.

If you’re worried about your son or daughter’s mental health, you can talk to your GP, who may refer you to Child and Adolescent Mental Health Services (CAMHS). Schools and other professionals can also refer to CAMHS. It provides help with a wide range of mental health problems for children and young people with complex mental health difficulties up to the age of 18. CAMHS workers are based in the community or clinics and include a variety of practitioners including therapists and psychiatrists. Please note that waiting times for CAMHS are very long.

Other mental health services

Be OK: Youth Mental Health offers one-to-one support, group sessions and peer mentoring for young people aged 16-25 with mental health problems in Crawley, Horsham and Mid Sussex. Young people can self-refer to the service. For further information, visit: www.e-wellbeing.co.uk/services/be-ok-youth-mental-health.

Be OK: West Sussex Mind offers the same service for young people in Adur, Bognor Regis, Chanctonbury, Chichester, Littlehampton, Midhurst and Worthing. They also accept self-referrals. For further information, visit: www.e-wellbeing.co.uk/services/be-ok-youth-mental-health.

Chat Health is a confidential texting service that enables secondary school children to reach out to the school nursing team to ask for advice on a wide range of issues including bullying, emotional health and wellbeing and illnesses. Young people can text 07480635424 for advice on anything to do with health and wellbeing. For further information, visit: www.chathealth.nhs.uk.

Counselling Directory: an online directory of qualified and insured counsellors covering an array of issues. They have over 700 private counsellors in or near West Sussex registered on their website. Visit: www.counselling-directory.org.uk.

ESTEEM offers one-to-one counselling, mentoring and group support for children and young people aged 14-26. Counselling can last up to 24 sessions. Young people can self-refer to the service by signing up at www.esteem.org.uk/get-involved.

NHS Talking Therapies: a range of talking therapies for people aged 18+ with mild to moderate anxiety and depression that include guided self-help, cognitive behavioural therapy (CBT) and counselling. Self-referrals can be made online. For further information, visit www.westsussextalkingtherapies.nhs.uk.

Room to Rant is a rap and spoken word initiative for young men aged 16-24 in Worthing and Crawley. Young men are encouraged to express themselves and explore their struggles and life experiences through the spoken word, rap and hip-hop. For further information, visit: www.audioactive.org.uk/projects/room-to-rant.

The West Sussex Single Point of Access (SPoA) is a dedicated service for children and young people age 4-18 years that provides a simplified single route to emotional wellbeing and mental health support. The SPoA helps direct you to find the right service, eliminating the need to refer to multiple services. Led by Sussex Partnership NHS Foundation Trust, the service is delivered in partnership with West Sussex County Council’s Youth Emotional Support Service (YES) and YMCA Dialogue. To access it, visit: www.e-wellbeing.co.uk/support.

Thought-Full: West Sussex Mental Health Support Teams: short-term, goals-based interventions for children and young people aged 5-18 with mild to moderate mental health difficulties. Sessions are either one-to-one or in groups. Referrals can be made by your child’s school’s Senior Mental Health Lead (SMHL). For further information, visit www.westsussex.gov.uk/education-children-and-families/childrens-mental-health-and-emotional-wellbeing/information-for-school-and-college-staff/thought-full.

YMCA Dialogue offers one-to-one and group counselling and therapy, primarily online, for children and young people aged 11-18. For further information, visit www.ymcadlg.org/what-we-do/health-and-wellbeing/ymca-dialogue-counselling-services.

Young People’s Shop offers up to six months of free face-to-face, online or telephone counselling (24 sessions) to children and young people aged between 11 and 25 in Chichester and Arun. For further information, visit: www.yps-south.org.uk.

Youth Emotional Support (YES) offers one-to-one and group sessions to 11-18 year olds. Both the one-to-one and group sessions are short-term interventions (group sessions tend to be a one-day event) designed to help young people develop the tools to manage difficulties such as anxiety and low mood. Referrals are made via schools, GPs or CAMHS.

For further information, visit: www.westsussex.gov.uk/education-children-and-families/your-space/health/emotional-wellbeing-and-mental-health/youth-emotional-support-yes-service.

Annual health checks for people with learning disabilities

All young people and adults aged 14+ who are on their doctor’s learning disabilities register should now be invited for an annual health check, which will include checking things like weight, heart rate, blood pressure and whether your child is receiving the right medicines. You will also be able to discuss any other related health concerns and whether you as parent-carer are getting the right support.

If your son or daughter has a learning disability, is aged 14+ and has not been offered a health check, ask your GP for one. For more, go to www.nhs.uk/conditions/learning-disabilities/annual-health-checks.

Community Learning Disability Teams

The Community Learning Disability Teams in West Sussex are based in Bognor Regis, Horsham and Worthing.

Community Learning Disability Teams include NHS staff from a variety of specialities, including clinical psychologists, behaviour support practitioners, specialist nurses, occupational therapists, psychologists, physiotherapists, psychiatrists, and speech and language therapists.

The teams work with people aged 18+ who have a diagnosed learning disability, mental health needs and/or difficulties with behaviour who cannot use mainstream services even with reasonable adjustments. They aim to support people with their physical and emotional health while addressing behaviours that challenge others. Referrals are taken from any source including family, friend-carers and self-referrals.

For families who have young people moving into adulthood, the people working with them will consider how transition and other related issues may affect them. Staff may work directly with the young person, their family and wider network of support or indirectly. For further information, visit www.sussexpartnership.nhs.uk/our-services/adult-learning-disabilities.

Children and Young People’s Enhanced Support Service (CYPRESS)

For children and young people aged 5-17 with learning disabilities and significant challenging behaviour, there is an expert support service that works to ensure high quality care for those who present with complex challenging behaviour.

To be eligible for the CYPRESS service, the child or young person must have a diagnosable learning disability and a dedicated social worker, be enrolled in a West Sussex special school and be at risk of an in-patient admission (or 52-week residential admission), as well as being a risk to themselves or others. The home/family/educational situation must be in danger of breaking down, and the family must consent to the referral and engage with CYPRESS. Referrals can be made by a child or young person’s social worker or special school, a paediatrician or CAMHS.

CYPRESS works in two ways. The Network Consultation Service provides consultations with parent-carers and the network of staff who support the child or young person in other settings, to think about how best to support the child or young person and formulate recommendations and action points to move the situation forward.

Direct case work is offered to children and young people who have behaviours that are described as complex and challenging in a range of settings. This more intensive support involves working with the young person, their family and their professional support network to develop, support and review new ways of working that address the difficulties the young person is experiencing. For further information on this service, visit www.sussexcamhs.nhs.uk and search for CYPRESS.

When there’s a problem

Patient Advice and Liaison Service (PALS)

PALS provides advice and information about health and related services. They will also help if you have concerns about local NHS care. Their staff aim to resolve concerns informally through liaison with the relevant NHS staff. PALS can also advise on making a complaint and what the process involves, or signpost you to the NHS Complaints and Advocacy Service, which is independent of the NHS. For further information, visit www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service.

Healthwatch

This is a health watchdog intended to provide information about health services and give users a voice in how they are run. If you need advice or information about health services in West Sussex, or you’re not happy with the service you or your child have received, Healthwatch should be able to help.

If you decide to make a complaint about NHS care or treatment, Healthwatch’s Independent Health Complaints Advocacy Service (IHCAS) can help you – you can contact IHCAS via Healthwatch. For further information, visit www.healthwatchwestsussex.co.uk.

Complaints about health care

If you are unable to resolve your concerns by using PALS or IHCAS, you can complain directly to the Parliamentary and Health Service Ombudsman. PALS can advise about taking complaints to the Ombudsman. You can find out more about the ombudsman at: www.ombudsman.org.uk.

Compensation

If you believe your child is the victim of a medical accident and could be entitled to financial compensation, you can take legal action against the person or establishment concerned. A good financial settlement could make a huge difference to a child’s long-term future. However, you also need to be aware of the possible drawbacks. You could speak to PALS first to look at other ways of resolving the issue.

Lawsuits can be very expensive, and if you don’t win, you will not get your costs paid. Legal Aid is unlikely to be available. The process can take a very long time – sometimes years – so you will need plenty of stamina and, above all, good legal advice. If you do decide on legal action, you can get free preliminary advice from Action for Victims of Medical Accidents (AVMA). They can tell you whether your case is worth pursuing and suggest a good solicitor. Go to www.avma.org.uk.

Section two: Finding your way

Life-limiting conditions

One of the hardest things a family can ever face is the news that their child has been diagnosed with a life-limiting or life-threatening condition. For some families this may be given during pregnancy, or shortly after birth, while for others it may come years later, depending on your child’s condition and how it progresses. For some families there are additional difficulties because their child does not have a specific diagnosis, even though professionals are clear that the outlook is not good.

Every situation is unique, but one of the most important things is ensuring that you can make the most of the time you have with your child. Having access to clear information is essential, particularly if your child has multiple professionals involved in their care and you are dealing with complex medical terminology as well as medicine, equipment and their other care needs. Clear information and planning ahead can help you to manage your child’s daily care and make the best choices for your child and the rest of your family.

There are many organisations and charities that can support you, your child and the rest of your family with your child’s care, or help you to talk through the concerns you have about what the future holds and how you can help your child to live as happy and full a life as possible. You might also want to discuss how you talk to your child about their diagnosis, how to support their siblings and how you will cope.

There are numerous resources online that provide support and information to families. A Special Child in the Family is a website (www.specialchild.co.uk) based on a book written by Diana Kimpton, after her children were diagnosed with cystic fibrosis.

Together for Short Lives (www.togetherforshortlives.org.uk) has a directory of services to support families and a wide range of resources to read or download. You may find their booklet ‘Caring for your child at end of life – family guide’ particularly useful. You can download this from their Family Resources web page. They also run a helpline (0808 8088 100) and can link you to families in similar situations, so you’ll have someone who understands what you are going through. They have also created a charter to set out what children and their families should expect from services.

Diagnosis

The news that your child has a life-shortening or life-threatening medical condition is devastating. For some families, the news will be given at an out-patient appointment, while for others it might come during a hospital stay. Although every situation is unique, you should have time after the diagnosis to discuss it and any questions you have about your child’s condition with a consultant or nurse.

You may find afterwards that you don’t recall everything that was said, or you have questions that you didn’t think of at the time. You should have been given contact information for your child’s care team or specialist, so get in touch with them if you want to ask anything or have information clarified.

After diagnosis, you might be given a series of follow-up appointments or be told that they will be arranged shortly. Your child’s GP should be told by professionals about the diagnosis and the plans that have been put in place to bring them home, if that is possible.

Depending on your child’s condition and their needs, you may require medication, equipment, training and even a specialist community team to provide support at home; if your child has been in hospital, you will probably liaise with the community team to plan their discharge. Sometimes, if children have been in a specialist hospital such as the Evelina, St George’s or Great Ormond Street, they might be moved to a local hospital first in preparation for their discharge home.

In some circumstances, families choose to transfer from hospital to a children’s hospice, where the child’s medical needs can be met, the entire family can be supported physically and emotionally, and palliative care can be given in a homely environment.

Hospices

Children who have life-limiting conditions may spend time in a hospice, which is an environment where most children can feel safe and receive specialist care. However, hospices are not just for end of life care. They also offer respite care for children who have complex physical or medical needs and support their families at every stage of their journey. Hospices are bright, welcoming places and parents often find the support they offer is invaluable, as they are extremely skilled in caring for all the family, including siblings.

The main hospice used by families in West Sussex is Chestnut Tree House Children’s Hospice, near Arundel. This is an excellent facility with highly trained staff who are extremely experienced in caring for children who have life-limiting conditions or complex health needs.

What is palliative care?

Palliative care is focused on enhancing quality of life when a cure is not possible. It is not just for the end of life – it may also be arranged while your child is receiving other therapies to treat their condition.

Palliative care aims to make your child as comfortable as possible by managing their pain and symptoms while providing emotional, practical and spiritual support to the whole family. This is sometimes known as a ‘holistic approach’ because it treats the whole person and their family, rather than just the condition or its symptoms.

For many children, palliative care will be delivered by the West Sussex Continuing Care Team. If your child’s care is managed by a specialist hospital, care may be managed by their team, e.g. the Evelina’s Paediatric Palliative Care Team or Great Ormond Street’s Palliative Care Team.

Other specialist support

In addition to Chestnut Tree House, Rainbow Trust (www.rainbowtrust.org.uk) provides family support workers to families of children with life-threatening or terminal illnesses. They can provide support at home or in hospital. Please note that West Sussex is covered by their Surrey team.

Sussex Snowdrop Trust (www.thesussexsnowdroptrust.com) provides nursing care at home for children with life-threatening or terminal illnesses. They can also provide health care assistants who will spend time with your child or their sibling and offer counselling and bereavement support. The trust’s catchment area runs along the coast from Chichester to Littlehampton and as far north as Billingshurst. Children are usually referred directly from hospital.

Multi-disciplinary assessment of needs

After you receive your child’s diagnosis, you should be told which agency is in charge of co-ordinating your child’s care – this is often the community nursing team. They should also tell you who has been allocated as your key worker or lead professional from the team, as they will be your main point of contact.

Shortly afterwards, your family should be at the centre of a multi-disciplinary assessment so you can talk about your child and family’s needs and how they can be met to enable you to enjoy life together as much as possible. This will help professionals to draw up a care plan for your child.

Together for Short Lives has created four core care pathways for professionals to plan for the needs of babies, children or young people with life-limiting or life-threatening conditions and those of their families. You may find these useful when thinking about your child’s needs. They are available at www.togetherforshortlives.org.uk/changing-lives/supporting-care-professionals/care-pathways. You can also find additional information on advance care planning at the Child and Young Person’s Advance Care Collaborative: http://cypacp.uk/parents-and-families.

Your child’s care plan

The care plan that’s drawn up should provide details of all the professionals and services required to meet the needs identified by the assessment, as well as what will be provided by each service.

You should be given a copy of the plan and asked which services you want it to be shared with. You should also be given contact information for services and told what to do if you need to contact people out of hours.

Over time, needs will change, so this should be an ongoing process that discusses your child’s health, their symptoms and the equipment and supplies needed, as well as their education and leisure needs. It should also consider the whole family’s emotional, practical, social, spiritual and cultural needs. If your child is a teenager, it may also consider transition and support into adulthood. You should be told when your child’s next review will be carried out, but if you want an earlier review or to draw up a revised care plan, ask for it to be brought forward.

In an emergency

An Emergency Health Care Plan, or Advanced Care Plan, is a document you can create with a member of your health care team, to record and share your wishes with key agencies on how you would like your child to be cared for in an emergency or if their health deteriorated suddenly. It can, but does not have to, include your wishes about your child’s end of life. This does not mean that your child will not receive medical care and you can choose to override it at any time. However, it is a helpful way to discuss with your child’s medical team what treatments would be in their best interests, how to make a decision between medical treatment and comfort care (or on whether these should be done together) and the difficult issue of balancing length of life against quality of life.

End of life care

It is immensely painful to have to think about planning your child’s end of life care, but making decisions and thinking about practicalities beforehand will ensure that you can make the best choices for your child and family and focus fully on supporting your child in their final days.

You should be provided with the care and support needed to help you decide on an End of Life Care Plan, which may be given by the Community Nursing Team, hospital staff or children’s hospice. End of life care may last for just a few hours, days, months or (occasionally) years.

An End of Life Care plan sets out your wishes and those of your child about the type of care you would like them to receive, and whether you would like them to be cared for in your own home, a children’s hospice or hospital. You can also consider how you would like their symptoms and pain to be managed, and whether invasive treatments and equipment should be withdrawn so your child can die peacefully and without pain.

Although every situation is different, health care professionals can advise you on the choices that are open to you and your child and will try to work with you to accommodate your wishes, as long as they think they are in the child’s best interests. Don’t be afraid to ask if you need more information or options explained to you in further detail.

The way you spend the last weeks and days of your child’s life will very much depend on your individual circumstances, but it is a time when you

can make precious memories together. You may have things that you or your child wish to do, such as creating a memory box, making prints or moulds of hands and feet, taking photos or making and watching videos. Although it can be difficult to look back on photos and videos, and there will be times when it is just too painful, it can be immensely comforting to know that they are there for the times when you might want to see them.

How can family and friends support you?

If you have other children, consider what childcare options you have and whether they are flexible. Siblings may benefit from some time away with family or friends, where they can play and be the focus of attention for a while. You may also need to consider emergency options if the situation becomes difficult or distressing, or you feel torn because you cannot meet the needs of everyone at the same time.

If you have well-meaning family or friends offering help, consider asking them to organise shopping or meal rotas, as this will give you precious time to spend with your child. It also helps other people to feel that they are doing something useful at a time when they may be feeling helpless.

If you are feeling overwhelmed by messages and calls, it can also be worth asking a relative or friend to be a single point of contact for your wider family and friends so they can pass on information on your behalf.

What happens after a child dies?

You should be able to spend time with your child immediately after their death. Professionals involved in your child’s care should be respectful of your cultural practices and how you would like your child to be cared for. If you have a faith, the spiritual care team or chaplaincy service can support in a spiritual or religious context, regardless of your faith.

Your child’s care team should have advised you in advance about the options available to you in the days immediately after their death. You might be able to take your child home, depending on your individual circumstances. If your child was receiving care in a hospice, they may have a special suite in which you can spend time with your child.

The type of ceremony you have is a very personal choice. You may wish to involve your wider family, friends and those involved in your child’s care,
hold a smaller ceremony, a religious service, a private ceremony or none. Most funeral directors do not charge for babies’ and children’s funeral costs, but there may be other costs to consider.

Bereavement support

The services involved in your child’s care will often be best placed to provide initial support to your family or explain what other help is available. There are also a number of organisations that offer bereavement support, including face-to-face individual therapy and counselling, group work or online support.

▶    Child Bereavement UK (www.childbereavementuk.org) offers support and guidance to bereaved families and runs a helpline. Tel: 0800 028 8840

▶    The Child Death Helpline (www.childdeathhelpline.org.uk) is run by volunteers who are themselves bereaved parents. They are supervised and supported by teams within Great Ormond Street and Alder Hey Children’s Hospital. The helpline is open every day of the year and supports parents and family members who have lost children of any age, even those in adulthood. Tel: 0800 282 986

▶    The Compassionate Friends (www.tcf.org.uk) provide information, a helpline, befriending and support to parents, grandparents and siblings who have suffered the death of a child. Tel: 0345 123 2304

▶    Cruse Bereavement Care (www.cruse.org.uk) has three branches in West Sussex: Worthing District; Chichester and Arun; Crawley, Horsham and Mid Sussex. Some of their bereavement volunteers are specially trained to work with bereaved children and young people aged between 5-18 years. The branches offer a telephone answering service on 0300 311 9959 and there is a national helpline on 0808 808 1677.

▶    Together for Short Lives (www.togetherforshortlives.org.uk) also has a helpline and can provide information, advice or just a listening ear. Tel: 0808 8088 100

Winston’s Wish (www.winstonswish.org) specialises in working with grieving children and young people. It runs a helpline and an email service, and has a variety of resources on its website for children, their families and professionals. Tel: 08088 020 021

Section two: Finding your way

Social care and help with daily life

When you have a child with SEND, daily life is often challenging. Getting the right support can make all the difference, so this chapter explains how to get the support your child needs; how their needs are assessed; support for you as a carer; the different types of care and services available for children; what equipment and adaptations are available. Then we’ll talk through what changes when your young person moves to adult services aged 18, how to get support and what types of care and services are on offer in West Sussex.

What is available?

Some services for children with SEND are county-wide. It’s also worth looking at mainstream or universal services, which are open to any family. They are provided according to which area of the county you live in. When considering what support you need, think about what will benefit your family – every household is unique, so your needs will be different to those of other families, even if you have children with the same additional needs or disability.

If you know other parents who have children with similar needs, pick their brains! Ask them where and how they got equipment, how they accessed a service, or simply how they cope. Don’t be afraid to ask professionals what is available. Local organisations can also be a great source of information and support. Consider asking friends, relatives or neighbours for support too, as many will be happy to help.

How to access services

Family Hubs (www.westsussex.gov.uk/familyhubs) offer a range of information, advice and support to parents, families and young people as part of WSCC’s Early Help services (see below).

At the time of going to press, there were 12 Family Hubs in the county offering drop-in support from Monday to Friday. These are located in Adur East (Shoreham), Adur West (Lancing), Arun East (Littlehampton), Arun West (Bersted), Chichester, Crawley Bewbush, Crawley Broadfield, Mid Sussex (Haywards Heath), Horsham (The Needles), Worthing Central (Library), Worthing East (Lyndhurst Road) and Worthing West (Durrington).

Family Hubs typically offer information, advice and guidance on the following, but check online for up-to-date information about your local hub (see link on previous page).

▶    Finding childcare

▶    Applying for free childcare entitlement

▶    Finding local activities and support services

▶    Pregnancy and early child development

▶    Parenting

▶    Health advice for you and your family

▶    How to access local housing services

▶    Crisis support, such as emergency access to food and utilities

▶    Personal finance and the benefits you may be entitled to

The Integrated Front Door

The Integrated Front Door (IFD) is the contact point to use if you want to make enquiries or a referral to Early Help and/or children’s social care. It aims to provide a single, consistent point of access to advice, guidance and decision-making about the right level of help needed to keep each child safe or achieve change as part of an early help response.

To contact Integrated Front Door, call 01403 229900. For out of hours enquires, contact the Emergency Duty Team on 0330 222 6664. For further information, visit www.westsussex.gov.uk and search for Integrated Front Door. If you experience difficulty contacting this number, phone 07711 769657 (does not accept text messages). This will connect you to the duty social worker.

Early Help

Early Help focuses on giving each child the best start in life, by helping parents-to-be and families with children and young people. The aim is to work holistically with families as soon as possible, identifying and taking action to respond to problems before they are difficult to reverse.

Early Help provides a range of support through its Dedicated Schools Team, Enabling Family Offer and Targeted Intervention, which is provided by a family support worker or key worker and provides direct, whole-family working on improving outcomes for children in need of help on a range of issues.

Early Help also delivers Enabling Families/Young People, which is a short, focused intervention where the parent-carer/young person can access up to five sessions with a family support assistant. Parent-carers and young people must be motivated to identify and work towards their chosen goals, exploring what is working well and the impact any current worries are having on the child/children. To access Early Help, contact Integrated Front Door (see above).

Children with Disabilities Service

The Children with Disabilities Service offers a specialist statutory social work service for disabled children aged 0-18 with complex needs, where those needs impact significantly on daily activities, family relationships, education, safety and independence. They work with children who have one or more of the following.

▶    A severe or profound learning disability

▶    A severe or profound physical disability

▶    Complex health needs related to a lifelong or life-limiting disability

▶    Autism

▶    A combination of disabilities, which individually are not severe, but cumulatively have a similar impact to a severe disability

The child or young person person’s disability needs should also include one or more of the following for them to be eligible.

▶    Use of specialist equipment for mobility

▶    Support with basic self-care when no longer age appropriate

▶    Need for constant supervision throughout the day and/or periods during the night when no longer age appropriate and where it is having a significant impact on the disabled child or family

▶    Behaviours that challenge, are a direct result of the disability and pose a significant risk of harm to the child or young person or others

▶    Severe developmental delay

▶    Severe communication needs

▶    Sensory communication disabilities (hearing, visual or multi-sensory impairments)

▶    Other neurological conditions such as FASD (Foetal Alcohol Spectrum Disorder)

There is a range of support available through the specialist Children with Disabilities Service, including:

▶    Support from an allocated social worker or a child and family worker (CFW) in Choice

▶    Direct payments that enable parents and carers to employ a personal assistant (PA) to support their disabled child and allow some breaks from caring

▶    Home care support or support to access the community through a specialist care agency

▶    Overnight breaks

▶    Specialist assessments and behavioural support through organisations such as Aspens

▶    Access to targeted short breaks provisions across the county, including after school clubs, Saturday clubs and holiday play schemes

Parents and carers can contact the specialist Children with Disabilities social worker via wschildrenservices@westsussex.gov.uk or the Integrated Front Door (IFD) on 01403 229900. The CWD social worker can offer information and advice when a child’s needs are complex and social work advice, assessment or intervention may be required.

Choice Team

The Choice Team works with children with disabilities and their families with lower levels of need through personal budgets or direct payments to plan and manage their child’s care. The Choice Team offers a key worker to act as a point of contact and advice for families and to carry out an annual review of their needs. The Choice Team can be contacted on 03302 222 633, or you can email them at choice@westsussex.gov.uk.

Child and Family Needs Assessment

If, on referral to the Children with Disabilities team, children are accepted for assessment, a qualified social worker will carry out a child and family needs assessment, which will aim to gather relevant information about the disabled child’s needs and those of their family, including any siblings.

The assessment can take up to 45 working days to complete, although it should be completed sooner in most situations. This will depend on the complexity of the disabled child and their family circumstances.

The assessment will look at a range of factors including the impact of the disability on the disabled child’s day-to-day functioning, what it is like caring for them, how their siblings are affected and the impact on family life. It may also focus on any safeguarding issues that formed part of the referral or arise during the assessment.

The allocated social worker will do this by talking to you and your children and, with your permission, will liaise closely with the professionals involved with your disabled child and your other children where this is having an impact. This may include teachers, health visitors, school nurses, paediatricians and any other involved professionals who know your child well.

They will also want to understand what support is available to you in caring for your disabled child, which will include wider family and friends, and speaking to them may also be requested during the assessment.

Please note that the eligibility criteria for child and family needs assessments are due to be updated in May 2025. We would therefore recommend checking the Local Offer for further information after this date.

Parent-carer Needs Assessments

All parent-carers have a legal right to ask for an assessment of their needs at any time. As a result of the Children and Families Act 2014, parents have enhanced rights and local authorities must carry out an assessment of their needs if it appears that the parent-carer has needs for support or they receive a request from a parent-carer to assess their needs for support. Your child does need to have a diagnosis to qualify for assessment.

A needs assessment should focus on your needs as a parent and include things like your health and wellbeing, health and safety issues, your participation in work, training, education or recreation, domestic, family and personal relationships.

If the local authority decides you need support, they may offer direct payments to pay for services that provide you with it. If they decide you do not require support, you can challenge this decision through the local authority’s complaints procedure.

Please note that in West Sussex, parent-carer assessments are carried out in combination with child and family needs assessments. West Sussex policy also limits assessment to the families of children who meet the criteria of the Children with Disabilities Service (see above). However, you still have the right to request an assessment. If the local authority refuses to assess, you could submit an appeal. For further information, visit: www.westsussex.gov.uk/about-the-council/have-your-say/complaints/make-a-complaint-or-appeal.

Tips for working with social workers

Many of us have had lots of contact with social workers over a number of years, and we suggest you have a look at Survival strategies for some practical tips on working with professionals. Here are a few extra tips.

▶    Just because you get a ‘no’ this time, don’t take that as a final answer. And even if you get a ‘no’ now, don’t be afraid to ask again as your needs and your child’s needs change

▶    Find out what other parents have and how they managed to get it. Inside knowledge can be very useful!

▶    Get people such as your GP, consultant and health visitor on side. Ask them to write letters for you to explain what you need and why it is so important

▶    It’s vital to build up a good relationship with your GP and social worker so that, when you are desperate, they’ll already know who you are and what you and your child’s problems are

▶    However, if you’re not happy about the way things are going in your contact with social workers, don’t feel you can’t say so

▶    Challenging decisions or making complaints can be stressful, but is unfortunately sometimes necessary

Who’s who?

Duty Officers: social workers or social work resource officers who are taking their turn on the ‘duty desk’, taking new referrals and dealing with emergencies.

Early Help Key Workers help families with multiple or complex needs who require coordinated multiagency support, to prevent the need for statutory social care intervention.

Family Support Workers work with parents, offering practical and emotional support.

Key Workers keep families informed about services for their child and ensure that professionals have all the information they need to provide a good service. The key worker coordinates service provision to minimise duplication and stress for the family.

Occupational Therapists (OTs): social care employ their own team of occupational therapists within the Independent Living Service. The team offers assessments, advice, equipment prescription and a housing adaptation advice for individuals with long-term disabilities within their home or foster placement.

Social Workers can offer advice and counselling to families. They assess what kind of help you might need and try to get it for you. They can also offer ongoing emotional and practical support to families.

Phrases you may hear

Care Package: this is the extra help you get after your needs assessment. It might, for example, include short breaks, a session with a community family worker or some social work support.

Carer’s Needs Assessment: if you are the person most closely involved in looking after your child and he or she is having, or is eligible for, an assessment of their needs, you will be entitled to a carer’s needs assessment in your own right. Ask for one to be carried out.

Initial Needs Assessment: to decide on the extra support your child needs, the social worker will come to your home to find out more about your situation. They will then write a report, giving details of your needs. This report is called an initial needs assessment. Any help your child receives should be based on it. It also includes the needs of parents or carers and the family as a whole, including siblings.

Multidisciplinary/multiagency: where all the professionals or organisations providing treatment or support come together to assess or discuss your child or family situation.

Outreach: this is where a worker comes out to you and/or your child, rather than you having to go to them.

What type of support is available?

Short Breaks or respite (0 to 18 years)

Short breaks are organised activities or care (outside of school) that give your child a chance to have fun and socialise, and you a chance to take a break from your caring responsibilities.

A short break might be an inclusive after-school or holiday club, a social group for children with similar disabilities, holiday playschemes or a few hours’ care in your own home. It may also be an overnight or residential stay if your child has more complex needs.

One of the benefits of a short break is that it can be a great confidence booster, for both you and your child. You find out that you can let your child go, and your child finds out that they can enjoy life away from the family. Some of us have found that this really pays off in the long term, because our children have learned to adapt to new situations and experiences much better than they might have done otherwise.

Don’t be put off if the first short break you try isn’t a good fit. Sometimes you’ll need to try several before you find the right one for your child. It is well worth the effort to get it right, though. Many of us have found that short breaks are an absolute life saver and something our children really look forward to attending.

The local authority has a duty to tell you about their range of short breaks, their eligibility criteria and how to apply. You can find out what is available in your area by looking at the Local Directory at the back of this book. You can also find further information at www.westsussex.gov.uk/local-offer/information/care-and-support/short-breaks.

Who can access Short Breaks?

West Sussex County Council’s Short Breaks Services are available for disabled children and young people who are resident in the county. Daytime short breaks can be accessed by any child under 18 with additional needs who is in receipt of middle or higher rate Disability Living Allowance (or the standard or enhanced rate of Personal Independence Payment (PIP) if they’re over 16).

For families of children and young people who have a similar level of need but are not receiving DLA, short break providers offer a simple self-assessment to assess eligibility. If you are unsure whether you meet the criteria, you can email the SEND commissioning team for advice at SENDCommissioningteam@westsussex.gov.uk.

You can organise daytime short breaks and individual one-to-one support yourself by contacting the short break provider. You should not expect to pay more for your child to attend than any other child.

If you want your child to access overnight short breaks, you will need to contact your local children’s social care team via the Integrated Front Door (IFD) for an assessment of need. If your child meets the assessment criteria and is considered eligible for overnight short breaks, social care workers will work with you to draw up a care plan that sets out the kinds of support they will get. This plan will be reviewed regularly.

Bear in mind that more specialist short breaks can be hard to get, and not all disabled children will be eligible. There is also a heavy demand for these services, so you will probably have to wait. But it’s worth being patient, as good quality respite care is essential, especially for families whose children have complex needs.

Care at home and in the community (0 to 18)

There are a number of organisations in West Sussex that provide care at home and in the community, including:

Children and Young People’s Continuing Care (CYPCC)

Some children and young people with complex needs require additional support beyond what is provided by GPs, hospitals or universal services. They can be supported by Children and Young People’s Continuing Care (CYPCC) at home or in the community. Referrals to CYPCC are made by professionals working with the child or young person. Assessment is carried out in collaboration with other services such as education and social care. For further information, visit www.sussex.ics.nhs.uk/your-care/continuing-healthcare/children-and-young-people-continuing-care.

Childcare

The Family Information Service has a searchable list of registered childminders, playgroups, nurseries and after-school clubs in West Sussex on the website link below. It also offers an extra support service that can help you find suitable childcare if this might not be straightforward for your child. For further information, visit www.westsussex.gov.uk/fis.

Residential services

There are a number of facilities in West Sussex providing short and long-term respite care for children with special needs under the age of 18:

▶    Cissbury Lodge (Worthing) – residential home for 7-18-year-olds who have a severe learning disability. Provides both short and long-term care.

▶    Chailey Heritage Home from Home Residential Service is designed for children and young people aged 3-19 years with complex physical disabilities and associated health needs including cerebral palsy, progressive neurological conditions, sensory impairments and associated health conditions. It offers flexible boarding packages including termly, weekly, fortnightly and short breaks boarding. For further information, visit www.chf.org.uk/childrens-residential.html.

▶    Bluebells Short Breaks – nurse-led respite breaks delivered by Chailey Clinical Services (near Lewes) for children in Sussex with complex or fluctuating health needs. Respite is provided in two or four-nightly blocks throughout the year. Referral is via NHS Sussex Children’s Continuing Health Care or West Sussex Children’s Social Care. Call 01825 722112 or email sc-tr.chaileyenquiries@nhs.net.

▶    Blue Cove (Worthing) – short-term emergency placements for children aged 12-16 years with a range of social, emotional and behavioural difficulties, at times of crisis or significant change in their lives.

▶    Breakwater (Shoreham) – short to medium-term residential care for children and young people aged 12-17. Children and young people may have a range of social, emotional and mental health difficulties.

▶    Bright Star (Worthing) – full-time care and short breaks for children and young people aged 7-18 with a wide range of needs including physical disabilities, autism and/or challenging behaviour.

▶    High Trees (Crawley and Horsham) – provides residential short breaks or long-term care for children with severe or moderate learning disabilities aged 7-18.

▶    Orchard House (Haywards Health) – provides a range of services, from clubs and day care to short breaks and full-time care for children with severe and complex learning disabilities and their families.

▶    Teasel Close (Crawley) – residential home for children who have emotional and/or behavioural issues that make it hard for them to live within a family environment.

For more information on these residential respite services, contact the Children with Disabilities Service via the Integrated Front Door.

Children with life-limiting or life-threatening illnesses

Chestnut Tree Community Team

Chestnut Tree House near Arundel has a team of nurses and care support workers who provide respite care to families of children with life-limiting or life-threatening illnesses, either at the hospice or at home. They also run fun days and activities at the hospice itself that children receiving community support are eligible to attend. For further information, visit www.chestnut-tree-house.org.uk/our-care/services-we-offer.

Rainbow Trust

Provides family support workers to families of children with life-threatening or life-limiting illnesses. Support at home can include helping with practical tasks, spending time with your child or their siblings, helping children remain in school by assisting with transport and so on. They can also support the families of children who are in hospital. For further information, visit www.rainbowtrust.org.uk/support-for-families.

Sussex Snowdrop Trust

Provides nursing care at home to children with life-threatening or terminal illnesses. They can also provide health care assistants who support the child at home, giving parents and siblings respite. The trust’s catchment area covers Emsworth, Chichester, Bognor Regis, Selsey, Arundel, Billingshurst, Petworth and Midhurst. Children are usually referred directly by a consultant paediatrician. For further information, visit www.snowdroptrust.com.

Equipment and adaptations

If your child has severe physical difficulties that make it hard to manage everyday things such as mealtimes, toileting or getting around, they may need additional support and facilities at home to help with daily living. These needs may change as they grow older or their circumstances change.

In West Sussex there are specialist occupational therapists (OTs) who assess children and young people with a permanent and substantial disability. If your child is under 18, contact the Integrated Front Door (IFD).

OTs can help by providing advice and support, and equipment where needed, to help children and young people with special needs and disabilities maximise their independence, wellbeing and dignity at home.

Individual needs can vary greatly, so OTs offer specialist functional assessments at home to work out how difficulties can be overcome and independence maximised. The things an OT will look at include accessing the home and garden, getting in and out of bed, seating, washing and dressing, toileting and bathing/showering.

Once individual needs have been identified, the occupational therapist will offer advice and information. They may also provide equipment to meet the assessed needs.

Adaptations to your home

An adaptation is a change to a property that allows a disabled person to move more freely and independently around their own home. Examples of adaptations include widening doors and installing a stairlift, through to installing wet rooms and specially adapted bedrooms. Adaptations may be made to a home that is owned or rented from the council or a private landlord.

If you need adaptations to your home, funding may be obtained through a Disabled Facilities Grant (DFG). Any work carried out must be considered essential and not just desirable. It’s important to note that you cannot get a grant for work that has already started.

The maximum amount that can be awarded is £30,000. Disabled Facilities Grants are NOT means tested for families of disabled children under 18, but your income will be taken into account for any amount over the £30,000 threshold. Once a formal application for a DFG has been received by a local authority, they must make a decision within six months.

Moving home

It may be that your present home isn’t suitable and can’t be adapted to meet your child’s needs. If you are a council or housing association tenant, you should speak to your housing officer about moving to a more suitable home. Occupational therapists from social care can provide advice on rehousing and potential adaptations to properties being considered.

Although it’s often a long wait if you need specially adapted accommodation, you will have a better chance of moving, or your name can be passed to another housing association that has appropriate flats and houses. If you rent your home from a private landlord, it can be even more difficult to make it suitable for your child’s changing needs.

Your local council housing service can give you information about getting onto council or housing association waiting lists. They may also know about local estate agents who have information about adapted properties for sale in the area.

Community Equipment Service

After the assessment, some things such as toilet seats, grab rails, hoists, bath aids and temporary ramps may be prescribed to you by the OT and supplied by the Community Equipment Service. They will be delivered to you and, if necessary, safely fitted. You can also access community equipment through your GP, physiotherapist or community nurse. For further information, visit www.millbrookhealthcare.co.uk/pages/west-sussex-community-equipment-service.

Choosing equipment

There are constant changes and developments in the kinds of equipment and gadgets that are available. If large, expensive items are recommended, make sure you try them out before making a decision – you need to see how they would work in your own home. Don’t be rushed or rush your child into making a decision, and make sure you listen to what your child is telling or showing you. For example, if they are upset or experience pain when lifted by a hoist, alternative slings or equipment may need to be considered.

If an assessment identifies that your child needs certain equipment, and they receive Direct Payments, you should be given the option to use them to buy what they need. Sometimes it is possible to top up the Direct Payment yourself to buy a more expensive piece of equipment, as long as it still meets your child’s needs.

Living Made Easy (previously the Disabled Living Foundation) has information on everything from clothing to communication and play equipment. Visit www.livingmadeeasy.org.uk for further information.

It can also be worth going to one of the annual equipment exhibitions. Kidz to Adultz exhibitions offer information and advice on mobility; seating; beds; communication; education; toys; transport; sensory issues; sports and alternative funding streams for disabled children and young people. Visit www.kidzexhibitions.co.uk for further information.

Wheelchair and Specialist Seating Service

If you need a wheelchair for your child, you can get one on loan from the West Sussex Wheelchair and Specialist Seating Service, which has branches in Bognor, Horsham and Worthing. They can provide transit and self-propelling wheelchairs, buggies for children over 30 months (or younger children with specialist seating needs), high performance wheelchairs, powered wheelchairs and pressure care for use in the wheelchair or customised seating. You will need a referral from a health care professional, such as your GP or physiotherapist.

Specialist equipment

For specialist equipment, Chailey Clinical Services has a rehabilitation engineering unit, which will custom-make or specially adapt existing aids to suit your requirements. Others like REMAP (www.remap.org.uk) and MERU (www.merushop.org) will try to make equipment to suit your child’s individual needs, which you may not be able to get anywhere else.

Whizz-Kidz is a charity that can help with financial costs where, for example, you’d like your child to have a better wheelchair than can be provided on the NHS, or recreational buggies you can use in environments where wheelchairs can’t go. Whizz-Kidz may be able to make up the difference in cost if you can’t afford it yourself. If your child needs specialist equipment at their childcare setting or school, you should discuss this with them. Visit www.whizz-kidz.org.uk for further information.

Continence support for children with additional needs

If your child or young person has ongoing continence or toileting issues, you can ask for support from tier 1 services – usually the school nurse or health visitor in the Healthy Child Programme – and an appropriate toileting plan can be put in place for them.

After these strategies have been put in place, they will be reviewed by the health professionals. If progress has not been made, they can refer your child on to the tier 2 specialist Children and Young People’s Continence Team. This can be accessed by children aged up to 18 years. Referrals are accepted for:

▶    Constipation and soiling: age three and up

▶    Toilet skills assessment: age three and up if a child has an identified physical or learning disability

▶    Day wetting: age four and up

▶    Night wetting: age five and up

To contact the Continence Team, call 01273 242145 or email sc-tr.childrenscontinence@nhs.net.

How is care funded for under-18s?

Most of the help that’s available for families is free. You shouldn’t be charged if you receive certain elements of Universal Credit. Many parents are happy with the way their needs have been assessed but then find there’s a waiting list for the things their assessment says they need, as budgets are almost always very stretched.

If your child has been assessed as being eligible for social care, they may be allocated a Personal Budget, which is the amount of money the local authority has decided is necessary for their care and support. A Personal Budget can be allocated to you directly as a Direct Payment, so you can organise and pay for things like short breaks yourself.

If your child’s disability involves ongoing medical treatment or help, the local health authority may be asked to contribute towards the cost of extra help such as outreach care. This is known as ‘joint funding’. However, it can take a long time to get everyone involved to agree on who will pay for what.

Personal Budgets

If your young person has been assessed as being eligible for support, you can choose to be given money to organise and pay for their support or services yourself instead of relying on a ‘one size fits all’ package decided by the council. This is called a Personal Budget.

A Personal Budget is meant to help the young person – or you as their parent – decide how much control you want to have over arranging their care and support.

The Children and Families Act 2014 gives young people and their families the right to request a Personal Budget as part of an EHC Plan. The Care Act requires local authorities to include a Personal Budget in the care and support plan or care element of an EHC Plan for young people over 18.

How do Personal Budgets work?

A Personal Budget is the amount of money the local authority has worked out it will cost to arrange the necessary care and support for your child or young person. Personal Budgets allow support to be arranged in a number of ways. You may choose to receive your child’s Personal Budget as a Direct Payment, which you can use to arrange and pay for their support yourself.

Alternatively, the council can use your child’s Personal Budget to arrange the support on their behalf – this is called a ‘Managed Personal Budget’. Or their social care and support may be a mixture of both Direct Payments and ‘managed’ care.

Direct Payments

Direct Payments are the main type of funding associated with Personal Budgets. You can use them to employ someone, often known as a Personal Assistant (PA), to care for your child, or to buy into services like an after-school club or holiday play scheme, but you can’t use them to buy a service run by West Sussex County Council as you cannot purchase their services directly.

Unless there are exceptional circumstances, you cannot use Direct Payments to employ a close relative who lives in your household, although you can use them to employ a relative who lives elsewhere.

Until a child is 18, parents can use Direct Payments to arrange and pay for services for them. Young people over 16 can take responsibility for Direct Payments or, if they are 16-17, choose to share the responsibility with their parent. Once a young person is 18, they can still get a parent or carer to receive their Direct Payments and arrange support for them if they prefer. In this case a parent or another person manages their child’s financial affairs as an ‘appointee’.

If your young person is assessed as needing support, they can’t be refused Direct Payments if they want them. The law says your local authority must tell you about Direct Payments and support you if you want them. If you’re already getting services, your child’s social worker should already have told you about Direct Payments.

Why choose Direct Payments?

Direct Payments are worth thinking about, especially if your child has been assessed as needing a service but has been on the waiting list for a long time. They may also work if you feel you’re having to fit in with what’s on offer, rather than getting the services that would most benefit your child.

Direct Payments give you greater flexibility but be aware that you will need to take responsibility for finding and organising the support or services you want, and for keeping accounts and records of how the money is spent.

Personal Assistants (PAs)

Some people assessed as needing home care services choose to get Direct Payments so they can employ their own Personal Assistant (PA). A PA is someone who provides support to disabled children and adults. They may offer support with everyday activities such as shopping, leisure activities, washing and personal care.

The Independent Lives website has advice on employing a PA. You can advertise for a PA on their vacancies board or use their online database of PAs to find the right person for you. They also offer a payroll service if you are employing a PA and need help with this.

Carer Health and Wellbeing Grants

Parent-carers may be eligible to receive funding to support their own health and wellbeing needs. This is available via Carers Support West Sussex (CSWS). They are required, through an assessment, to demonstrate a carer’s needs in relation to any funded support. This includes Carer Health and Wellbeing Grants and equipment funding, which may be available as a result of a preventative assessment. As part of this assessment, CSWS is required to consider a carer’s own resources and community support that could meet their needs, before considering if funded support is necessary. For more information, contact Carers Support West Sussex at www.carerssupport.org.uk.

Carer’s Emergency Contact Card

This is a card that enables carers to have named contacts and a contingency plan in place for the person they care for in the event of an emergency. Each card is assigned a unique reference number which an Emergency Resolution Team can use to access your emergency arrangements and named contacts. It operates 24 hours per day. For further information, visit www.carerssupport.org.uk/-carer-emergency-contact-card.

Carers Health Team

This is a team of health professionals whose aim is to promote the health and wellbeing of carers. It is a free service providing support for carers aged 18+ who are registered with a West Sussex GP. They work directly with carers to develop individual strategies for each carer, with the aim of reducing the strain of coping with their caring role. They can also look at the health needs of the person who is being cared for. They work closely with other NHS social care, voluntary and community services and will link carers to them as appropriate. Contact the team on 01243 623521, or email SC-TR.carerwellbeing@nhs.net.

Young carers

Coping with a young person’s disability can be difficult for siblings. They may have to take on household chores or help with some care tasks. It can be emotionally draining to live with people whose behaviour is challenging or whose disabilities are complex. Under the Care Act 2014, the needs of siblings can be assessed, and respite for them considered. When you speak to the Integrated Front Door, or Adults’ CarePoint if your disabled young person is under 18, ask for a ‘young carer’s assessment’. Support for young carers can include:

▶    Reducing the amount of caring a young person has to do if it is too much for them, by thinking about the needs of the whole family

▶    Helping the young carer to get more support at school or college

▶    Making sure that the young carer gets a regular break and time for friends and fun

▶    Checking that the young carer is supported by other adults and professionals in their lives

▶    Making sure that the young carer has someone to talk to when things are difficult

Parents can refer young carers for assessment. For further information, visit www.westsussex.gov.uk/youngcarers.

Preparing for adulthood

When our children are heading towards adulthood, we need to know that they will be supported to live as independent and fulfilling a life as possible and be appropriately cared for. But if your child needs a lot of support now, it can be hard to find the headspace and time to think about the future.

Who gets support from adult social care?

Law reforms in 2014 brought about significant changes regarding special educational needs and social care provision for children and young people with SEND. Preparing for adulthood is a key element of those reforms and, for young people aged 18 to 25, there are two pieces of legislation that mean they may be entitled to support from adult social care.

The first is the Children and Families Act 2014, which introduced Education, Health and Care (EHC) Plans – a single assessment and planning process for young people with SEND that can potentially continue up to age 25. In addition to this, Part 1 of the Care Act 2014 deals with the care and support of people over the age of 18. The acts share the following goals and themes:

▶    Working towards clearly defined outcomes

▶    Engagement and participation of parents and young people

▶    Jointly commissioning and developing a Local Offer of support

▶    Coordinated assessments and EHC Plans

▶    Personalisation and personal budgets

Not all young people who received social care support when they were young will qualify for adult services, and having an EHC Plan does not necessarily mean they will be entitled to social care support as an adult. However, it’s also important to highlight that some young people who may not have had support from social care in the past may need it in adulthood. This is why it is important to have an assessment done.

Moving to adult social care

Once your child is 18, the social care support they need is provided through the council’s Adult Social Care Team. Adult social care workers carry out needs assessments to decide what the young person’s support needs are, whether they are eligible for support and, if they are, what support social care can offer them. In West Sussex, enquiries are initially directed through the Adults’ Care Point.

If your child has an EHC Plan, you should begin to discuss their possible future needs for social care support during their Year 9 annual review as part of the process of transition planning. It is helpful to invite someone from social care to transition planning meetings, as they’ll decide whether your child will be likely to need or get support from the local authority in the future.

If your child doesn’t have an EHC Plan but is getting social care support, you should speak to your social worker about moving to adult social care.

Transition to Lifelong Services

Young people who move from Children’s to Adults’ Services will be supported by Transition Teams within Lifelong Services.

They support young adults with lifelong disabilities including physical, sensory or learning disabilities and autism. Generally, they have grown up with their disability and it has had lifelong effects. Their disability must have been acquired before the age of 25 and they must have had care needs before that age. The service supports adults who meet these criteria until their 26th birthday. Young adults falling outside the criteria will be referred to their local adult social care community team.

There are two Lifelong Transition Teams in West Sussex – the Northern and Southern Team, who work with young people with learning disabilities in the north and south of the county, and a Western Team who work in the west. They also support eligible young people across all of West Sussex who do not have learning disabilities but (typically) have autism or physical disabilities.

Both teams are responsible for assessing the eligible needs of the young person, alongside their family and carers, and planning a package of support to help them lead the life they want.

For young people who are known to Children’s Services, their allocated worker will confirm if they are to be referred to the Transition Team. This usually happens at around age 16. Young people not known to Children’s Services can self-refer from 17.5 years. They can request a referral online at www.westsussexconnecttosupport.org/guide-to-lifelong-services-transition-team/transition-referrals-process/how-are-transition-referrals-made.

Working together

A successful transition to adult care and support involves the young person, their family and professionals working together. The Care Act 2014 means local authorities have a legal responsibility to cooperate, and to ensure that everyone works together to get the transition right.

Child’s Needs Assessments

Under the Care Act 2014, local authorities have a duty to carry out a Child’s Needs Assessment (CNA) for a young person where there is ‘likely to be a need for care and support post-18’. The purpose of the assessment is to find out what adult social care a young person might be eligible for once they reach 18, so they can make informed choices about their future.

When does planning start?

Under the Care Act 2014, young people or their parents can request a Child’s Needs Assessment (CNA) at any time before their 18th birthday, whether or not they have an EHC Plan. In West Sussex, planning usually starts from around the age of 16.

The CNA should be carried out at a time when it is of ‘significant benefit’ to the young person’s preparation for adulthood. It should include an ‘indicative personal budget’, so that young people are able to plan what their future support might look like.

If the local authority thinks your child will not need adult care social support, or they believe you are asking for the CNA too early for it to be useful, they can refuse to carry out the assessment. If they do refuse, they must explain why in writing and include information and advice on what can be done to ensure that the young person can avoid the need for care and support.

If the local authority does not carry out an assessment because the timing means it would not be of ‘significant benefit’ they should advise you when the CNA should be carried out, and contact you and your young person to arrange the assessment when that time comes.

For a young person with an EHC Plan, the conversation about whether they require a needs assessment should begin in the Year 9 review as part of the preparation for adulthood planning. If your young person does not have an EHC Plan, but is still supported by children’s social care, it is a good idea to ask their social worker at their next review when it will be useful to have the assessment.

What should the Child’s Needs Assessment (CNA) include?

The assessment should be person-centred and it should give information about your child’s needs, plans and aspirations for the future. It should also have clear short and medium-term outcomes so that it can be used as the basis for a conversation between you, your young person, a professional from adults’ services (who should have good knowledge of the support options that will be available to your child) and any other professionals involved in the young person’s care and support.

Under the Children and Families Act 2014, EHC Plans must clearly set out the care and support required as a result of the young person’s special educational needs. So if a young person is over 18 and they have a care and support plan, this should be incorporated into the EHC Plan (if there is one) rather than developed separately. It will include those elements of their care and support that are directly related to their SEND and specify other care and support. It should also clearly highlight which elements are not directly related to SEND.

Eligibility and the assessment process

Since the Care Act came into force, it has changed the way the local authority decides if adults are eligible for care and support services. All three of the following must apply to your young person for them to be eligible for adult care or support services.

▶    Your young person’s needs are due to a physical or mental impairment or illness

▶    Your young person’s physical or mental impairment or illness affects their ability to achieve two or more ‘specified outcomes’ (see below)

▶    Your young person’s wellbeing is significantly affected by their inability to achieve these outcomes

Achieving ‘specified outcomes’

When considering whether someone is eligible for adult care or support services, the assessor will look at ‘outcomes’. This means they look at the impact of your young person’s physical or mental impairment on their daily life. They will look at strengths and capabilities, and identify support that may be available in the local community to help your young person be as independent as possible. They will ask you about:

▶    Managing and maintaining food and drink

▶    Managing personal care – making sure they are clean and dressed appropriately

▶    Managing toilet needs

▶    Getting around the home safely

▶    Looking after the home

▶    Developing and maintaining personal relationships

▶    Being able to access and take part in work, training, education or volunteering

▶    Using services in the local community, such as public transport and leisure facilities

▶    Carrying out caring responsibilities

The local authority may measure your young person’s needs against other ‘outcomes’ too – so ask what those might be. They also look at their care and support needs over the last year to consider whether their needs may change.

The local authority must carry out a needs assessment for people who appear to be in need of care or support, regardless of their financial status or whether the local authority think that their needs will not be eligible. To arrange a needs assessment if your young person is already 18, or a Child’s Needs Assessment if they are under 18, contact the Adults’ CarePoint and request an ‘assessment of needs’.

The assessment process

During the assessment, a social care worker will gather information from your young person, their parent-carers and relevant workers from education, health and social care. Assessments usually take place in your home and may require more than one visit.

The social care worker doing the assessment should note down what is said during the meeting. This should include the services your young person needs and anything that you disagree with. It is important to involve the young person as much as possible during the assessment process. They may need specialist support to help them communicate their thoughts and feelings.

In West Sussex, the council refers to their care needs assessment as a ‘wellbeing conversation’ designed to take a ‘strength-based, person-centred approach’ to the young person. It focuses on what the young person’s strengths are, what they want to achieve and what services and support they may need to do this. They also use a document called My Plan, which is designed to capture important details about the young person that can be shared between services as they transition to adulthood.

Financial assessment

Lifelong Services will first address ‘community-led support’ to decide what community resources are available to help the young person achieve their plans before agreeing to fund any services. This is carried out by an internal funding panel. The young person will also need to have separate financial assessment to decide whether they have to contribute towards their own care and support. This is carried out by one of the county council’s welfare benefits advisers.

Assessment tips

▶    Don’t assume that because your child has an EHC Plan, they will be eligible for adult services

▶    Get as much information as you can from other people in similar situations – including information about services, waiting times for assessments and recent examples of provision

▶    If you or your young person feel that they need someone to support them with the assessment, you could ask for an independent advocate to help you. You can find out more about advocacy options in West Sussex by going to www.westsussexconnecttosupport.org or contacting the Adults’ CarePoint

▶    Don’t be afraid to ask questions and explore different options. When you are speaking to a professional, make sure you note down their name, job title and contact details, in case you need to go back to them

▶    Don’t be afraid to suggest things that haven’t been tried before. If you can explain why your idea may work, others may be willing to listen

▶    Don’t see professionals as ‘the opposition’. Try to explain yourself clearly, and to see their point of view. If you don’t agree, say so politely and explain why

▶    Ask what the next steps are and when they will happen

Ensuring that there is no gap in services

When the local authority assesses a child who is receiving support under legislation relating to children’s services, the Care Act 2014 requires them to continue providing him or her with that support through the adult assessment process. This will continue until adult care and support is in place to take over, or it is clear from the assessment that adult care and support does not need to be provided. These changes are meant to prevent someone who is already receiving support suddenly finding themselves without the care and support they need when they reach 18.

Your young person’s support plan

After the assessment, if your young person is considered eligible for support, someone from adult social care will help you put together a care and support plan (see above). The plan will confirm which of your young person’s needs are to be met and how this will be done. It should be reviewed on an annual basis.

The person from social care will be responsible for making sure that any agreed services are put in place. However, be aware that there can be delays between finalising the plan and putting it into action. The support your young person receives will depend upon their individual situation but may include:

▶    Equipment to help them stay independent

▶    Technology to keep them safe in their home

▶    Help looking after themselves at home

▶    Help with going out

▶    Help getting a job or studying

▶    Access to supported living or other housing support

The care and support could come from a variety of places, including family and friends, the NHS, West Sussex County Council and community and voluntary organisations.

Things to remember

When you get a copy of your child’s support plan, double check that all their needs have been taken into account. Once a support package has been agreed, it’s hard to renegotiate, and once support has been provided, it can’t be taken away without the person’s needs being reassessed. If the support plan isn’t being monitored properly, contact the Adults’ CarePoint and request a review date.

Keeping the support plan up to date

Completing the planning process and putting care and support arrangements in place does not mean the end of the local authority’s responsibilities. The local authority has a legal duty to review the plan and make sure that the person’s needs and outcomes continue to be met over time, although the Care Act does not specify how often this has to happen. But if anything has changed, a new assessment must be carried out, so it is important to let the local authority know about any changes as quickly as possible. Your young person also has the right to request a review of their care and support plan if they wish.

What if you disagree with the assessment findings and support plan?

If you don’t agree with the findings of the assessment, contact the Adults’ CarePoint to discuss the matter. The support plan could be changed by agreement. You have the right to ask for a review of the assessment, and to ask someone to advise you or act on your behalf. If your young person needs support to do this, they could ask for help from one of the advocacy services in West Sussex.

If you still disagree with the assessment, or with how social care intends to meet your child’s needs, you can go through a formal complaints procedure.

What if your young person’s support plan isn’t working?

From time to time, things may go wrong with your young person’s care. Your social care worker should already have discussed with you and your young person what should happen if a crisis occurs, and this should be included in their support plan.

If there is a problem with the way your young person’s care is being provided, you should first speak directly to their care provider. If that doesn’t resolve the problem, call the Adults’ CarePoint.

How is adult care and support funded?

The Care Act 2014 gives local authorities the power to charge people for social care services. These include services such as residential care homes, short breaks, day services, home care, community support and home adaptations.

Depending on your young person’s financial situation, they may be asked to pay towards the cost of their support, which the local authority will help to arrange. This might come as a surprise but very few people have to pay the full cost of their care. The amount payable will be based on an assessment of the young person’s income and not your family income as a whole. Your young person is entitled to financial support from the local authority if one of the following applies.

▶    The type of care and support your child needs is already provided free of charge

▶    Your young person can’t afford to pay for the full cost of their care

▶    Your young person has asked the council to meet their needs

▶    Your young person does not have the mental capacity to arrange their own care and has no one else to arrange it for them

Financial assessments

A financial assessment is carried out alongside your young person’s needs assessment. This assessment will work out how much the young person will have to pay towards a service and how much the council will pay. It takes the young person’s financial position into account and is also used to check whether they are getting the correct state benefits. The mobility component of DLA or PIP should not be taken into account when the young person’s income is assessed.

If the service is for your young person, your finances should not be taken into account. Young people should not pay for services that are received under Section 117 of the Mental Health Act 1983. If your young person’s assessment shows they are eligible for funding for social care, they may be allocated a Personal Budget, which is the amount of money the local authority has decided is necessary to arrange their care and support. If there is a dispute about charges, the service must remain in place while the issue is resolved.

What support is available to over-18s?

Although many services are not provided directly by adult social care, as they are commissioned or contracted out to independent organisations, the first point of contact for all the services we describe is still the Adults’ CarePoint – call 01243 642121 or email socialcare@westsussex.gov.uk for more information.

You can find out about adult social care support in West Sussex on the Connect to Support website at www.westsussexconnecttosupport.org. It also has advice for carers and information about support groups, voluntary organisations, charities and more.

Day activities

The term ‘day activities’ covers a range of provision. For example, a young person may have a package of daytime activities that includes attendance at a day centre, working in a paid or voluntary job supported by social care’s Supported Employment Team and doing a college course.

Day centres usually offer a range of activities and are used by different age groups. They may provide a hot meal at lunchtime and transport is frequently arranged, although this may be charged for. There are no day centres catering specifically for young people.

The following list is correct at the time of going to press. We recommend that you check the websites posted below to see what’s available in your area, as this could be subject to change.

▶    4Sight runs a range of in-person and virtual clubs and activities for people with sight loss. For further information, visit www.4sight.org.uk/health-and-wellbeing-service.

▶    The Aldingbourne Trust runs a wide range of support services for people with learning disabilities and/or autism, from supported living to job training and life skills. For further information, visit www.aldingbournetrust.org.

▶    The Apuldram Centre in Chichester has a day centre that enables working age adults with learning disabilities to take part in a wide range of occupationally focused and enterprising activities such as horticulture, woodwork, cookery, arts and crafts. For further information, visit www.apuldram.org.

▶    Chailey Heritage Foundation runs The Hub, which offers day provision to young adults aged 16+ with physical disabilities and complex health needs. It offers a chance to develop life skills, develop a peer group and live life to the fullest. Young people can access the Leisure and Skills Centre, which offers art, cooking, drama and other multimedia and sensory activities. There is also a fully accessible gym, spa and hydrotherapy pool. For further information, visit www.chf.org.uk/futures-hub.html.

▶    Burnside Day Services (Burgess Hill), Chestnuts Day Centre (Bognor), Glebelands Day Centre (Shoreham), Judith Adams Centre (Chichester), Strawford (Horsham), The Laurels (Rustington) and The Rowans (Worthing) offer a range of resources and activities including a training kitchen, sensory spaces, art and craft studio, garden studio, computer suites and spaces for drama, dance and fitness. For further information, visit www.westsussexconnecttosupport.org and search for ‘day opportunity services’.

▶    Guild Care (Worthing) has two centres for adults (18+) with learning disabilities and complex needs, offering day and respite services from the Birkdale and Fitzalan Howard Centres. They also run the Extra Club for young adults (18-30), which is a social and friendship group running once a fortnight on Thursday evenings. For further information, visit www.guildcare.org.

▶    Outreach 3 Way (Dimensions UK) supports people with learning disabilities and autism. It runs a number of classes every week and also has a day centre in Ifield, which runs groups and workshops. For further information, visit www.dimensions-uk.org/about/where-we-work/outreach-3-way.

▶    The Point in Chichester is a day centre for adults with severe physical disabilities that provides opportunities to develop life skills and independence. Go to https://thepoint-chichester.org.

Tips for choosing day activities

▶    Ask your social worker for a list of day activities and where they take place

▶    Arrange to see different activities and centres yourself. Ask how they could help meet the needs of your child. It’s important to get an idea of what’s available and whether your child would be happy there

▶    Make sure your young person gets a chance to see the activities and look around the centres too

Short breaks or respite

Short breaks or respite care aims to give families who care for a family member some time out from caring. There are no rules about where short breaks take place but they are usually provided at other people’s homes or residential homes, or by people coming into your home or taking the young person out.

The Aldingbourne Trust runs two projects in Arun and Chichester called Arun Connects and Chichester Connects. They help people aged 18+ with a range of disabilities to maximise their independence through one-to-one, group, online and telephone support. They can help with a range of issues including housing, benefits, money, safety, bills and letters, employment, volunteering, travel, health, advocacy and being physically and socially active. For further information, visit www.aldingbournetrust.org/connects-support.htm.

Worthing Mencap runs an equivalent service to the Aldingbourne Trust called Worthing & Adur Connects. They provide information, advice and support on a range of issues including reading and understanding letters and bills, making phone calls, managing or applying for benefits, budgeting, housing, applying for disabled bus passes and referrals for employment and volunteering. For further information, visit www.worthingmencap.org/worthing-adur-connects-support.php.

Outreach 3 Way provides short breaks and respite to people aged 18+ with learning disabilities and/or autism. For further information, visit www.dimensions-uk.org/about/where-we-work/outreach-3-way.

Tu Vida West Sussex provides free respite care (including emergency respite care) for adults (18+). This is for specific circumstances, such as an unpaid carer being taken ill unexpectedly, and for short periods of time only (up to a maximum of 72 hours). They also provide self-funded daytime and evening care in your own home or the community, either temporarily or regularly. For further information, visit www.tuvida.org.

Home care services

Home care services provide personal care for people in their own homes. They help with personal care such as washing and bathing, getting up and dressed or getting ready for bed. Most care needs are provided by private agencies. For further information, visit www.westsussexconnecttosupport.org and search for ‘care options’.

Personal Assistants (PAs)

Some people assessed as needing home care services choose to get Direct Payments so they can employ their own Personal Assistant (PA). A PA is someone who provides support with everyday activities such as shopping, leisure activities, washing and personal care.

In West Sussex, Independent Lives has a website with advice on employing a PA. You can advertise for a PA on their vacancies board or use their online database of PAs to find the right person for you. They can also offer a payroll service if you are employing a PA and need some help with this. For further information, visit www.independentlives.org.

Shared Lives Carers

Shared Lives is a scheme that links up adults with learning and/or physical disabilities with carers who provide support and accommodation in the carers’ own homes. Carers are paid, trained and supported by the council and support can be on either a full-time or short breaks basis. For further information, visit www.westsussexconnecttosupport.org.

Equipment and housing adaptations

Whether your young person still lives at home, in private rented accommodation or social housing, the local authority may be able to help them to live more independently by providing equipment or adaptations for the home that make daily life a bit easier.

Adaptations might include providing ramp access or handrails, widening doors, raising electrical sockets, replacing a bath with a wet room or providing equipment for people with hearing or visual difficulties. These adaptations might be part or fully funded by the local authority, depending on your young person’s circumstances.

Your young person will need to be assessed by an occupational therapist from adult social care to see if they are eligible for adaptations. To find out more, call the Adults’ CarePoint on 01243 642121 or email socialcare@westsussex.gov.uk.

Much of the advice regarding equipment for under-18s is also relevant for adults, so do have a look at the Adaptions to your home section for information on the Community Equipment Service, Wheelchair and Seating Service and other national organisations that can help.

When things go wrong

What the law says

By law, social care departments must have a complaints procedure and a complaints officer. Social care services must be able to give you information about how to make a complaint, where you can get help to make one, and how quickly the complaint will be dealt with.

Anyone who receives support from social care services can make a complaint about a service they get or one that they feel has been unfairly refused. The complaint can be raised by the young person, a family member such as yourself or a friend. If your young person has the mental capacity to give their consent, they must give permission for you to complain on their behalf.

▶    You can also use the local authority’s complaints procedure if, for example:

▶    The local authority refuses to assess you

▶    You have been waiting too long for an assessment

▶    You are not happy with how the assessment was done

▶    You feel your child is not getting the services they need

▶    You are being asked to pay too much for the services

▶    You have problems with the services being provided

How to complain

To make a complaint, it is best to start by speaking to your contact from the Integrated Front Door (for under-18s) or the Adults’ CarePoint (for over-18s). You can also make a complaint by filling in the online form at www.westsussex.gov.uk and searching for ‘complaints’.

If you’re not happy with the outcome of your complaint, you can consider taking the matter further by raising it with the Local Government and Social Care Ombudsman (LGO). Call them on 0300 061 0614 or fill in their online contact form. You can visit their website for more information about how they might help at www.lgo.org.uk.

Every local authority must have a ‘monitoring officer’ – someone who makes sure the council is doing what the law says it must do. So if you think your local authority has broken the law (for example, if it won’t pay for residential care when you think the law says it should), you can ask the monitoring officer to look at your case. Your local councillor or MP may also be able to help. If these steps don’t sort out your problem, you can take your case to the Secretary of State for Health – but you’ll need legal advice before you do that.

Another possibility is to use (or threaten to use) the courts, either to sue the local authority for a ‘breach of its legal duty’ (though this can be difficult to prove), or to get a judge to rule on whether its actions were legal, rational and reasonable in a process called ‘judicial review’.

Again, you’ll need legal advice. If you can’t afford to pay for a solicitor, and you meet other conditions, you may be able to get public funding (legal aid) to help pay for legal expenses. The Disability Law Service offers free legal advice and a casework service for disabled people. Visit www.dls.org.uk or call 0207 791 9800 to find out more.

This may all sound daunting but don’t be put off making a complaint if you have genuine concerns, as many problems can be resolved fairly quickly.

Section two: Finding your way

Money matters

When children have SEND, it can be tricky to anticipate how much extra help they will need and how much it will cost, but for many families there will be additional expenses, which soon add up.

Some of the things that you may have to find money for include travel expenses to and from hospital, parking costs if you drive, additional loads of laundry and special diets. Some parents also find that they are unable to return to work, due to the high level of care that their child needs.

All these things can be a strain on the pocket but many families are entitled to extra benefits or other financial help, which can make all the difference.

What is Disability Living Allowance (DLA)?

Disability Living Allowance (DLA) is a benefit for children under 16. It is often the first benefit that parents claim and it’s also a ‘passport’ to other sorts of financial help. This means that if your child is awarded DLA, you may be entitled to claim other benefits and additional elements to Universal Credit claims too.

DLA is paid every four weeks. It isn’t taxed or means-tested, so your other income won’t be taken into account when the assessor is deciding whether you meet the criteria to be awarded DLA. You can claim DLA if your child needs more help or looking after than other children their age because of their SEND.

If you are considering claiming DLA, it can be useful to note down all the ways in which you have helped your child day and night over the past few weeks. This will help you to answer the questions on the application form.

When you think of it this way, you may be surprised by how much extra help you give your child. Many of us underestimate just how much time and effort we put in, as after a while it becomes our everyday life. We forget about all the planning and adjustments we make, even for something as simple as popping to the shops for a few essentials.

What counts as help?

Lots of things count as help. Examples include things such as the need to teach your child skills that other children pick up naturally, always being ‘on duty’ because your child needs close supervision and the difficulties that even something as straightforward as a trip to the supermarket may bring.

Many of our children need help to be understood, make sense of what’s going on around them or manage difficult feelings. Some children need ‘hands on’ help with everyday activities like dressing, washing, toileting, learning to play or getting on with other children. Your child may need you to monitor a medical condition, give medication, help them use special equipment or carry out a therapy programme. Perhaps your child needs your help to get out and about, or needs you to keep an eye on them to stay safe.

Some children need much more help than others of the same age. But even if your child needs extra help with just a few things, it is worth applying.

How can I get the form?

You can go to www.gov.uk/disability-living-allowance-children to download the DLA application form, or call the Disability Living Allowance helpline and ask them to send you a printed form. Be aware that because the form is very long, it can be costly and time-consuming to print, so you may prefer for a paper copy to be sent to you. You can arrange this by calling 0800 121 4600 or textphone 0800 121 4523 (Mon-Fri, 9am to 5pm).

Another advantage of requesting the form by phone is that it will be date stamped and, if you return it before the deadline and an award is made, DLA will start from the date on the form.

When you call, be clear that you are claiming for a child and not yourself. Tell them your child’s age so that you will be sent the right claim pack. The application form you’ll need is called DLA1A. If your child is 16, you will be asked to fill in an application for Personal Independence Payment (PIP) instead.

If your claim is successful, DLA is payable in two parts – care and mobility components. You can claim either or both but there are rules about what you can claim.

The care component

You can claim this if your child needs help with ‘personal care’, i.e. looking after themselves, which includes things like keeping safe and communication. You can claim this part of the benefit at any time, as long as your child has needed the extra help for at least three months and will continue to need it for at least another six. There are three rates at which it is paid:

▶    Lower rate: if your child needs some help during the day

▶    Middle rate: if your child needs more help during the day or at night. This might be frequent attention throughout the day, if your child has speech and language needs for example, or almost constant supervision if your child has behavioural difficulties or health issues. Or if your child needs help for a significant part of the night but doesn’t need it during the day

▶    High rate: if your child needs substantially more help, day and night, than a child of the same age without a disability

The mobility component

You can claim this part of the benefit if your child needs extra help getting around. There are two rates for this:

▶    Lower rate (payable from age 5): if your child needs someone around to keep them safe or help them find their way around. To get this, you will need to show how much more help your child needs than other children of the same age. Most children awarded the lower rate mobility component are likely to have a significant learning or coordination difficulty, a communication disorder or some sensory impairment

▶    Higher rate (payable from age 3): if your child’s ability to get around is severely restricted by their disability. This is payable to children who are unable or virtually unable to walk independently. Children meeting this rule are likely to have a severe physical or sensory impairment, or a life-threatening neurological, cardiac or respiratory disorder

You may also be able to claim the higher rate if your child has a severe impairment of cognitive and social functioning, e.g. severe autism and learning disability. If so, you may find it useful to refer to Contact’s guide for claiming the higher rate mobility component for children with learning difficulties and autistic spectrum disorders. Go to www.contact.org.uk or request a copy via their helpline on 0808 808 3555. You will need to show that your child’s behaviour is so unpredictable, disruptive and extreme that they regularly require someone to physically intervene to prevent self-injury, injury to others or damage to property. You will need supporting evidence. To claim on these grounds, your child will already need to be getting the high rate of the care component.

If your child is coming up to three years old and already receives the care component of DLA at the higher rate, you should be contacted and asked if you wish to make a claim for the mobility component.

More about the higher rate mobility component

If your child is awarded the higher rate of the mobility component, you might get an exemption from paying vehicle tax on the car they use. Ask the disability benefits unit dealing with your child’s DLA claim for a Vehicle Excise Duty (VED) exemption form (INS216). With this, you can apply for a certificate of exemption from the DVLA, which proves you do not have to pay tax.

Technically, the car is only exempt while it is being used solely by or for the purposes of your disabled child. However, they do not have to be in the car every time it is used. As long as they use the vehicle ‘substantially’, this is perfectly acceptable.

Making a DLA claim

For both the care and mobility parts of DLA, you have to show that your child’s needs for care or supervision are ‘substantially in excess’ of the needs of other children the same age who do not have an illness or disability. It’s a good idea to send supporting information from professionals working with your child, because whatever you say needs to be backed up.

Tips

▶    Allow yourself an hour a day to fill in the pack, and give this a high priority. Awards are made for two to three years at a time and can really help your family to manage the additional expenses, so it’s worth spending time on the form to get it right.

▶    There are two ways to fill in the form. You can download an electronic copy, which you can fill in on a computer (but not a mobile device or tablet). This is quite a useful way of doing it, as you can save your progress and go back to the form to make changes or add things as you remember them. If you do fill it in electronically, note that you still need to print it off so you can sign it. Alternatively, you can print off a copy or ask for a form to be sent to you and fill it in by hand. If you do request a form to be sent to you, it will include a Freepost envelope, which can be useful if you are sending lots of supporting evidence.

▶    If you fill in the form by hand, try to keep your writing legible, but don’t worry too much about spelling or writing in complete sentences. If you make a mistake, cross it out rather than using correction fluid. Alternatively, you can use a Word document to write and provide extensions to your answers. This can then be printed and included with the application form.

▶    Look at all the most recent reports you have about your child and read them through. They can often help you to summarise your child’s needs and explain them on the form.

▶    Tick boxes on every page, but don’t fill in pages that aren’t relevant. Write additional information for every question on a separate Word document or piece of paper, providing examples of the child’s difficulties and support needs relating to the question being asked. Make sure you write your child’s name and date of birth on any extra sheets.

▶    Don’t underestimate the help your child needs – consider the extra assistance they need compared with other children of the same age, as this is how they will be assessed.

▶    As you fill in each page, describe what happens at mealtimes, bathtime, bedtime, at the shops, on public transport and so on. Say exactly what help or supervision you give, and what would happen if your child didn’t get that help.

▶    It can help to give examples of how a child or sibling of the same age, or a similar age, who does not have SEND would cope in the same situation. Would they manage the same task without the support your child needs? Perhaps they would be able to do the task independently.

▶    It also helps to include examples of what happened when your child did not get help, or the right level of support, as this can help the assessor to fully understand the challenges you and your child face.

▶    Don’t forget about glasses, hearing aids and other important pieces of equipment – they can be costly to repair or replace. If your child routinely breaks or loses these items, make sure you say so on the form. If your child is autistic or has ADHD, include things like now and next boards, timers and fidget toys.

▶    The assessor is looking for what a typical day looks like for your child with their difficulties and support needs. Focus on the difficulties your child has with their bodily functions such as eating, sleeping, getting dressed and washing. Some of this information can be very hard to share, and it can be challenging to identify the additional support you provide. You may find it easier to identify your child’s difficulties and support needs by writing a diary that logs every time you have to provide them with support. Document the times at which they are needing support, what they are having difficulty with, why they are having this difficulty, what support you provide and how long it takes for you to provide it.

▶    Remember, the claim needs to be strong enough to convince someone who has never met your child. Read it back to yourself. Is there anything you haven’t said? What you read may seem repetitive but don’t worry, it’s meant to be. The Department for Work and Pensions (DWP) will be looking for common threads running through your claim.

How others can support your DLA claim

The DWP will also want evidence from other people who know your child, so be prepared. Check that any professional whose details you include knows you are claiming, as the DWP may contact them. GPs are very often contacted but may not know as much about your child as consultants, so it may be worth making an appointment to put them in the picture. The DWP will usually contact your child’s school too.

Get a supporting statement from a professional who really knows your child well. Whoever you choose must say how much more care or supervision your child needs and why. It’s not enough just to give a diagnosis – every disability impacts differently on individual children. If the professional has only seen your child in a clinic or at school, make sure they don’t have to guess how things are at home – ask them to read what you have written, or give them a summary of the main points you would like them to include in their statement.

Getting supporting advice for problems at night can be difficult, so keep a night-time or sleep diary for a week or two. Show it to your GP or your child’s teacher and include it with the claim. It helps if others are able to say that you report broken nights – so if you have asked your GP for help with tiredness or your child’s disturbed nights, or if your child falls asleep or is irritable at school and their teacher can link this to your reports of broken sleep, ask them to include it in their advice.

Ask professionals to complete their statement on headed paper. In their section of the form, you can refer to the attached letter. Each professional must sign and date the form.

If it’s at all possible, send supplementary evidence that supports what you are saying. For example, you could include copies of medical reports, speech and language assessments, psychological advice and your child’s EHC Plan, or details of the SEN Support plan the school has put in place. However, do remember that the DWP will not return these reports, so always ensure that you send photocopies rather than original documents.

You should also make a copy of everything else you send, especially if you have filled in the form by hand, so that you have a record of what was written. Keep the copies in a safe place – you will need to refer to them if you want a decision looked at again or the originals get lost in the post, and when the claim is reviewed.

To make sure your claim arrives safely, consider sending paperwork by special delivery. Doing this is expensive but it’s worth it for the peace of mind: you get a receipt, the claim can be tracked, and the DWP has to sign to say they’ve received it. If you hand a claim in to a Jobcentre Plus, ask for a receipt.

What to do if your DLA claim is unsuccessful

If your application for DLA is turned down, or you think you should be receiving a higher rate, don’t give up. You can request a Mandatory Reconsideration (MR), which should be made within a month of the date on the decision letter. If the one-month deadline has passed but you still wish to challenge the decision, seek advice from the Reaching Families Benefits Advice Service within 13 months of the decision date. This must be done before you can proceed to an appeal, and will need to include a copy of the Mandatory Reconsideration. To request an MR, the relevant form (CRMR1) can be downloaded from www.gov.uk/mandatory-reconsideration.

If your child is already receiving DLA but their condition and support needs have increased or changed, you can request a reassessment by asking for a Change of Circumstances form. Where a decision was correct at the time but circumstances have since changed, it is known as a ‘supersession’. If you are unsure about the process or need support with your claim, it’s important to seek advice to ensure that you have the right evidence in place.

It’s also important to seek advice before asking for a decision to be looked at again. If you are unsuccessful, you have the right to appeal to an independent tribunal. If you don’t want to attend in person, you can submit an appeal in writing or send a representative to act on your child’s behalf. However, it is worth attending if you can, as paper appeals tend to be less successful than those made in person. The form you need in order to appeal is called SSCS1 Notice of Appeal, and it can be downloaded from www.gov.uk/government/publications/appeal-a-social-security-benefits-decision-form-sscs1. You can also appeal online at: www.gov.uk/appeal-benefit-decision/submit-appeal. Alternatively, call the DWP on 0800 121 4600 and ask for a hard copy to be sent to you.

There are time limits for reviews and appeals, so always get advice as quickly as possible. If you are on a very low income, your local Citizens Advice centre may be able to help you with an appeal. You can also refer to our fact sheet on reconsiderations and appeals, which can be downloaded from www.reachingfamilies.org.uk/factsheets.

Carer’s Allowance (CA)

Carer’s Allowance (CA) is a weekly payment for anyone who spends at least 35 hours a week looking after someone with an illness or disability but isn’t paid to do it. To claim Carer’s Allowance, you must be 16 or over and not in full-time education. The person you look after must be getting the middle or higher rate of DLA or either rate of the daily living component of PIP. If someone other than you cares for your child, they can claim the benefit instead. Even if your child is at school or college, you may well find that you ‘clock up’ more than the required 35 hours a week. Only one person can claim CA for your child and you can only claim CA once, even if you care for more than one person who’s getting DLA or PIP.

You can claim CA and earn up to £151 per week after deductions (Income Tax, National Insurance and half of your pension contributions). As of April 2025, this will rise to £196 per week. Up to half your earnings can be disregarded if you pay someone who’s not a ‘close relative’ to look after your child, and you can claim CA even if you are getting DLA, PIP or Attendance Allowance yourself. CA is taxed and counted as income if you claim other means-tested benefits.

It’s worth claiming CA even if you are on means-tested benefits because, although CA is deducted from them, claiming it protects your pension.

You do not need to make a claim for CA to receive the carers’ element of Universal Credit – CA will be fully deducted from your Universal Credit award. Note that the deduction for CA shown in the Universal Credit calculation will be slightly different to the actual CA payments you receive. This is due to CA payments’ frequency, which is four weekly (or weekly). This has to be converted to a monthly amount for the Universal Credit calculation. You can receive both CA and the carers’ element.

The carers’ element can be awarded if you are claiming Universal Credit and providing at least 35 hours a week of care to a person who receives a qualifying disability benefit. If you are working, it is possible to earn above £151 per week, which stops your entitlement to CA. You will receive Class 1 NI credits with CA and Class 3 with UC. Both count towards your state pension.

If you are not eligible for Carer’s Allowance but provide care for at least 20 hours a week, you might be able to get Carer’s Credits. These are credits that fill gaps in your National Insurance record. For further information, visit www.gov.uk/carers-credit.

How do I claim Carer’s Allowance (CA)?

The process for claiming CA is simple and quick. You can fill in a claim form online at www.gov.uk/carers-allowance or download one to print out and fill in by hand.

You can make a claim when you apply for DLA and, as long as you meet the qualifying criteria, CA will be paid as soon as an award for DLA is made. Claims can be backdated up to three months, so you can wait and make a claim for CA once your child’s award for DLA has been agreed.

If your child’s claim for DLA is turned down, or they are only awarded the low rate of the care component, apply for CA as soon as you can, while you challenge that decision. This ensures that your backdated CA will be safe if the decision is revised.

Universal Credit

For the past few years, changes to the benefits system have meant that many familiar benefits have been replaced by Universal Credit. This is an integrated, means-tested benefit for people in or out of work. Universal Credit has replaced the following benefits, which are now known as ‘legacy benefits’.

▶    Child Tax Credits

▶    Employment and Support Allowance (ESA)

▶    Housing Benefit

▶    Income Support

▶    Jobseeker’s Allowance (JSA)

▶    Working Tax Credits

Instead of claiming these different benefits, people will receive a single Universal Credit payment, which is made up of different elements, such as a child element for people with up to three children, work allowances, housing costs, childcare costs and an additional element if your child or young person has a disability.

If you migrate over from Tax Credits to Universal Credit, Transitional Protection will protect the amount you currently receive, and you will not be worse off. The amount of Transitional Protection you have will eventually erode with annual UC increases, until your payments match the current rates.

Universal Credit is usually paid monthly in arrears and this can make it harder for families to budget, especially if transitioning to UC, as there may be a wait of five weeks or more before they receive their first payment.

To get a clear picture of how the changeover to Universal Credit will affect your family, and to ensure that you are claiming everything you are entitled to, we recommend that you seek further advice. A number of national organisations can help you with this: Contact has a free helpline on 0808 808 3555, fact sheets and other information about Universal Credit. You can also find useful information at www.citizensadvice.org.uk, www.gov.uk, www.moneyhelper.org.uk and www.turn2us.org.uk.

Getting support with benefit applications

Reaching Families offers a Benefits Advice Service for parent-carers making DLA and/or PIP applications for their child or young person. We can also support parent-carers making applications for Carer’s Allowance.

Our benefits adviser can help parents through the application process. We can also check draft claims and advise parents on how to strengthen their application. For further information, visit: www.reachingfamilies.org.uk/benefits-advice.

We have published a number of fact sheets on Carer’s Allowance, DLA and PIP that can be downloaded from our website. For further information, visit www.reachingfamilies.org.uk/factsheets. Elsewhere, we deliver online workshops on applying for DLA, PIP and Universal Credit. We also have the Turn2Us benefits calculator on our website to check what else you may be entitled to. For further information, visit: www.reachingfamilies.org.uk/benefits-calculator.

Many other disability organisations offer useful advice about claiming DLA for children and young people with specific illnesses or disabilities, including:

▶    Carers Support West Sussex offers a generic benefits advice service to all carers and can advise on a range of benefits including Universal Credit, Housing Benefit and work-based benefits. For further information, visit www.carerssupport.org.uk/benefits-toolkit-and-services.

▶    Cerebra publishes a highly respected in-depth guide on DLA. To download it, visit www.cerebra.org.uk/download/disability-living-allowance-dla-guide.

▶    Citizen’s Advice West Sussex delivers online seminars on applying for DLA and PIP. For further information, visit www.advicewestsussex.org.uk/advice/send-information-and-support.

▶    Contact has a range of information on DLA, PIP and other benefits. For further information, visit www.contact.org.uk and search for ‘Tips on completing the Disability Living Allowance form’.

Many of us find filling in the DLA form a rather depressing experience, because you have to concentrate on what your child can’t do rather than what they can. So when you’ve finished, make sure you spend some time focusing on the positives – enjoy the things your child can do and celebrate their successes!

Further support

The Family Fund: what is it?

The Family Fund is a charity for families on low incomes who have children under 17 with a long-term disability or a serious or life-limiting condition.

Many parents have found that the fund is a great help for one-off payments for specific things like washing machines, fridges, beds, outings and holidays in the UK, or even abroad. Eligibility depends on the family in question being in receipt of certain government benefits.

Although the fund considers most requests, they give priority to the people whose social or financial needs are greatest. They cannot help fund equipment or services that it is the responsibility of health or social services to provide. You cannot get help for a child who is in the care of the local authority.

How do I apply?

You can apply online at www.familyfund.org.uk or call 01904 550055. When you apply, you will need to give details about your child and what help you need. The fund will ask for details of your income and savings and evidence of the qualifying disability award such as DLA or PIP. They may contact your consultant for more information on your child’s disability. The first time you apply, someone from Family Fund may call you to discuss your application if they have questions or need more information. You may want to ask a professional working with your family to support your Family Fund application.

Carer Health and Wellbeing Grants

Parent-carers may be eligible to receive funding to support their own health and wellbeing needs. This is available via Carers Support West Sussex. CSWS are required, through an assessment, to demonstrate a carer’s needs in relation to any funded support. This includes Carer Health and Wellbeing Grants and equipment funding, which may be available as the result of a preventative assessment. As part of this assessment, CSWS is required to consider a carer’s own resources and community support that could meet their needs, before considering if funded support is necessary. For more information, contact Carers Support West Sussex at www.carerssupport.org.uk.

Budgeting loan/advance

A budgeting loan (known as a budgeting advance for those on Universal Credit) can be requested for certain essentials. If the loan/advance is agreed, the DWP will pay it on top of your Universal Credit or benefit payments. It will have to be repaid from future benefit payments. To qualify, you must have been in receipt of benefits for 26 weeks before applying, but there are exceptions. For example, if you are receiving Universal Credit and request a budgeting advance for getting or keeping employment, this time period does not apply. A budgeting loan/advance can be used to help with:

▶    Buying furniture or household equipment, clothing and footwear

▶    Paying rent in advance and/or removal expenses to new accommodation

▶    The costs of improvement, maintenance and security of your home

▶    Essential travelling expenses and expenses due to you getting or starting a job

▶    Maternity or funeral expenses

▶    Hire purchase payments and other debts, but only if the money was borrowed for expenses in one of the other categories

Although the loans are interest free, budgeting for repayments can be difficult, as an agreed sum will be taken out of future benefit payments.

Short-term benefit advance/Universal Credit advance

You can request a short-term benefit advance/Universal Credit advance in the following circumstances.

▶    You have made a new benefit claim but will be in financial need until you receive your first payment

▶    You have had a change in circumstances that will increase the amount of benefits you are entitled to

▶    There is a delay in paying your benefits, for example if there is a technical problem in processing your claim or payment

To qualify, you must have claimed a benefit first and be able to show that, without the advance, there will be a risk to you or your family’s health or safety. Again, the advance is a loan that must be repaid from future benefit payments, which can make budgeting difficult. You can find out more about budgeting loans/advances and short-term benefit advances from your local Jobcentre Plus, or go to Turn2Us (www.turn2us.org.uk) and search for ‘benefit advance’.

Household Support Fund

The Household Support Fund provides crisis support to vulnerable households in the most need with the cost of essentials and preventative support to help families from falling further into crisis. It is a nationally funded programme coordinated at a local level by West Sussex County Council. At the time of writing the programme is due to end on 31st March 2026. Eligibility includes:

▶    a wide range of low-income households and is not limited to those in receipt of benefits

▶    families with children of all ages disabled people who may be facing acute challenges to meet additional needs in order to manage their conditions, remain independent and avoid becoming socially isolated

▶    care leavers who face particular barriers as they leave the care system and begin to live independently

▶    people with caring responsibilities who may be facing acute challenges incurred through their fulfilling these responsibilities for vulnerable citizens

▶    individuals with no recourse to public funds - regardless of immigration status, if there is a genuine care need that does not arise solely from destitution

Applicants who meet the criteria will receive a one-off financial support offering per household during a six-month period. For further information visit www.westsussex.gov.uk/leisure-recreation-and-community/household-support-fund.

Food Banks

If you are in crisis, contact your local Children and Family Centre or Family Hub. They may be able to support you and refer you to other organisations, such as a food bank, if needed. You can also contact your local Citizens Advice for information or the Trussell Trust, who can give you more information about your local food bank. See Local Directory for details.

Fares to hospital

If you are on a low income, you may be able to reclaim travel costs to and from hospital. You will need to be able to provide proof that you are in receipt of one of the following benefits: Income Support, Income Based Jobseekers Allowance, Income Based Employment and Support Allowance, Universal Credit (if income is less than £15,050), Guaranteed Pension Credit, HC2 Full Help Certificate, HC3 Partial Help Certificate.

If your child is under 16, escorts may be paid for one parent or guardian attending the hospital appointment. If travelling by public transport, you will need proof of travel and a certificate attendance claim form completed by the department you attended. Car travel mileage is paid at 14p per mile for round trips. For further information, visit: www.uhsussex.nhs.uk/patients-and-visitors/patient-transport.

Council Tax reduction for people with disabilities: what is it?

If you’ve had to adapt your home especially for your disabled child, your council tax bill could be reduced to that of a house in the band immediately below yours. If your house is already in the lowest band (A), you get a reduction of a sixth of your bill. The sorts of adaptation that might make a difference are:

▶    Additional space for a wheelchair to be used indoors, such as widening doors and corridors and/or removing partition walls

▶    An extra room to meet special needs, such as a downstairs bathroom or toilet

The Council Tax Discount Scheme: what is it?

If there are fewer than two adults resident in your home, you can get a discount on your council tax bill. This is worth 25 percent if there is one adult. Where there are no applicable adults, a council tax exemption is granted. Not all adults are counted for council tax purposes so it’s worth checking with your district or borough council.

How do I get it?

Check your district or borough council’s website or call their council tax team to apply for a reduction in your council tax band or a discount on your bill. If you have missed out in the past, you can ask for either of these to be backdated to the date they first applied.

Motability

Families of disabled children who receive the higher rate mobility component of DLA (or PIP) can use it to lease a car, or an electric wheelchair, through ‘Motability’. Your child must have at least 12 months of their award left to run. For details of the scheme, call Motability on 0300 456 4566 or go to www.motability.co.uk.

Family Fund Mobility Support Programme

As Motability is based on DLA, it mainly benefits families of children who are aged 3+. However, the Family Fund Mobility Support Programme can provide a car leasing package for families of disabled and/or seriously ill children with significant mobility needs. If your family is eligible for the programme, Family Fund will cover the costs of the monthly rental for the duration of the lease vehicle. For further information, visit www.familyfund.org.uk/grants/schemes/ffms.

Charitable grants

Some charitable organisations make grants for specific purposes like holidays or buying a special piece of equipment. We have included a directory of grantmakers. You can also use Contact’s online grants search tool, provided by Turn2Us. For further information, visit www.contact.org.uk and search for grants. If you know of any other grant-making organisations and would like to share them with us and other families, please let us know.

There is a knack to securing grants from charitable funders. Here are some tips to help you.

▶    Most grantmakers produce guidelines, often available online, detailing what they give to and, just as importantly, what they don’t support. Make sure you read these guidelines carefully before applying

▶    Remember that each funder has their own interests and, as a result, a one-size-fits-all application that you send to several grantmakers is unlikely to be successful. Instead, tailor your application to suit the criteria of each funder

▶    Avoid using jargon or technical language – grantmakers are notorious for their love of plain English

▶    Ask another parent or perhaps a professional to read your application before you send it off. If they have trouble reading it then so might the grantmaker

▶    Don’t be over-emotional or rage against injustice – state your case in detail and provide as much information as you can in support of the application

▶    Explain what else you’ve done to try to secure the things your child needs, including requests made to statutory services

▶    Even if it is not required, include a supporting letter from a professional, for example, a doctor, social worker or teacher, whichever is the most appropriate

▶    Try and make your application as presentable as possible. An attractive and easy-to-read application is more likely to be successful

▶    Make sure you send everything the grantmaker requests. If you don’t, your application might be delayed or, worse still, ignored

▶    Remember that competition for grants is fierce. Many good applications are turned down simply because of demand – so make your application as strong as possible but don’t blame yourself if your first attempts are not successful

Parental leave

Parental leave is unpaid. But it gives parents the right to time off work to look after their children and is more generous for parents of disabled children. It’s often more important to strike a better balance between work and home when you have a child with SEND, and in order to give more time to family commitments.

Employers and employees can agree their own terms and conditions for parental leave. It’s worth checking your own contract; it may be more generous than employers are legally required to offer. For example, it may include a few days’ paid parental leave.

If there is no mention of parental leave in your employment contract, the legal minimum applies. For every child in your family, whether they have a disability or not, each parent can take up to 18 weeks’ parental leave.

Although parents can only take up to four weeks a year, the leave can be taken on a daily basis rather than a week at a time, and it can be taken at any time up until your child’s 18th birthday. This is a real help if you’ve ever felt uncomfortable asking for time off to get your child to medical appointments, or to attend annual reviews or lovely things like school plays and concerts.

To take parental leave, you must have worked for your employer for at least a year. You must also give your employer at least 21 days’ notice in writing. In some circumstances your employer can postpone your leave for up to six months, if they feel your absence would significantly disrupt their business. If this happens to you, call the Working Families free legal helpline for advice on 0300 012 0312.

Childcare Inclusion

West Sussex County Council provides advice, guidance and training for early years and childcare practitioners to enable children with additional needs to attend mainstream provision. The local advisory team helps practitioners to develop the expertise and to make the necessary adaptations to support the learning and development of children in their care. This may include visits to settings before a child has even arrived, to ensure that plans for their inclusion are in place.

Where appropriate, funding may be made available to settings to enable the needs of individual children to be met. Funding is also made available to supply mobility equipment where this is recommended by health professionals. Parents or childcare practitioners interested in the support available should contact them through the Family Information Service. The deadline for applications is normally six weeks. For further information, visit www.westsussex.gov.uk and search for ‘inclusion funding’.

Early Years Free Entitlement Childcare

Government-funded free childcare is available to families of children 9 months+ until they start school. There are three bands of entitlement.

▶    Working parents’ entitlement – 15 hours per week for 38 weeks per year for families of children aged 9 months+. Can be combined with the universal entitlement for 3-4-year-olds to make up 30 hours (from September 2025)

▶    2 years+ for parents of children receiving some form of additional support – 15 hours per week for parents receiving work-related benefits like Income Support, Jobseeker’s Allowance and Universal Credit, or have an EHC Plan or get Disability Living Allowance

▶    Universal entitlement for all 3-4-year-olds – 15 hours per week over 38 weeks of the year. Can be combined with working parents’ entitlement to make up 30 hours (from September 2025)

Please note that families might still be eligible for free childcare if one partner is working and the other receives Carer’s Allowance or some other benefits.Eligibility information can be found at www.gov.uk/check-eligible-free-childcare-if-youre-working or via the government calculator at www.gov.uk/childcare-calculator.

For more information, visit www.westsussex.gov.uk/freechildcare. To search for providers who offer free entitlement places, visit www.westsussex.gov.uk/education-children-and-families/childcare-and-early-education/find-childcare/search-for-childcare-providers.

Disability Access Fund

This fund is available to early years childcare providers where a child receives DLA and they qualify for Free Entitlement Funding (either universal and/or for working families). Early years settings must identify children who are eligible. They can then apply for a one-off annual payment (from April 2025 the rate is £938) to help them to support the child and meet their individual needs. If your child is eligible, check with your childcare setting to ensure that they have applied. For further information, visit www.westsussex.gov.uk and search for Disability Access Fund (DAF).

Tax-free childcare

This government scheme is run for parents who are working, including those who are self-employed. Again, families may be eligible if one parent is working and the other receives Carer’s Allowance or some other benefits. You can’t use this scheme with some other schemes like Universal Credit Childcare, Childcare Vouchers or Tax Credits, and which scheme is best depends on your circumstances – you should use the childcare calculator for this: www.gov.uk/childcare-calculator.

Parents can open an online account to pay for approved childcare for children until September 1 after they turn 11 (after they turn 16 if disabled). For every £8 you pay in, the government will pay in an extra £2, which can really add up for families with high childcare costs.

The maximum the government will pay in is £2,000 per year, provided you contribute the maximum of £8,000. For a disabled child, the government will contribute a maximum of £4,000 per year, as long as the parent pays in £16,000. It is important to note that this scheme can affect your other benefits, so it is worth taking expert advice before making any decisions. For more information about tax-free childcare and other ways to get help with childcare costs, go to www.childcarechoices.gov.uk or www.westsussex.gov.uk/freechildcare.

Parents in full-time education

If you are in full-time education, you can apply for a Childcare Grant to help you if your disabled child is under 15 or under 17 and has special educational needs and you are eligible for student finance. For more information, go to www.gov.uk/childcare-grant.

Personal Budgets

A key focus of SEND reforms has been giving parents and children more involvement and control in decision-making, as well as more choice and flexibility in the way in which care and support is provided.

Direct Payments have been available to young people and parents of children with SEND for some years to pay for social care provision; what has changed is that since the Children and Families Act 2014, disabled children and young people have the right to request a personal budget as part of an EHC Plan.

A Personal Budget is an amount of money identified by the local authority to deliver parts of the provision set out in your child’s EHC Plan. It gives you the flexibility to choose which services and support to use in order to meet your child’s outcomes.

A Personal Budget is not the total amount of money available, as it does not include the cost of a school place or existing support provided by a school, such as additional learning support.

There are four ways in which a Personal Budget can be paid:

▶    As a Direct Payment, which you can use to arrange and pay for your child’s support yourself

▶    As a ‘notional budget’, where the council uses your child’s Personal Budget to arrange the support on their behalf

▶    As a ‘third party arrangement’, where funds are paid to another individual or organisation on behalf of the child and they manage the funds

▶    Or you can opt for a combination of all three

Direct Payments

If you decide that you want to receive your child’s Personal Budget as a Direct Payment, you can use it in a number of ways to meet the outcomes identified in their EHC Plan. For example, you may choose to employ someone, often known as a Personal Assistant (PA) to care for your child, or buy into a local service, like a day nursery, an after-school club, holiday playscheme, or even a residential short break.

Unless there are exceptional circumstances, you cannot use Direct Payments to employ a close relative who lives in your household, although you can use them to employ a relative who lives elsewhere.

Until a child is 18, parents can use Direct Payments to pay for and arrange services for their child. Young people over 16 can choose to take responsibility for their Direct Payments or share the responsibility with their parent while they are under 18.

Once a young person is 18, they can still nominate a parent or carer to receive their Direct Payments and arrange support for them. In this case a parent or another person manage their child’s financial affairs as an ‘appointee’.

If your child has been assessed as needing support, they can’t be refused Direct Payments if you want them. The law says local authorities must tell you about Direct Payments and support you if you want them. If you’re already getting services, your child’s social worker should have made you aware that Direct Payments are an option.

Why choose Direct Payments?

Direct Payments allow you to have choice and control over the support you receive in order to meet the outcomes that have been identified for your child. Direct Payments give families greater flexibility, however you will have a more active role to play, which will include ensuring that money is used to meet the outcomes identified in the plan and providing bank statements and receipts to show how the money has been spent.

Direct Payments in West Sussex

If your child is under 18 and does not currently access any services but you think they may be entitled to some, ring the Integrated Front Door and ask for an assessment; for over 18s, call the Adults’ CarePoint. You can also complete an initial enquiry form online at www.westsussex.gov.uk.

In West Sussex, Direct Payments for parents are managed by the local authority. You can find more information on Direct Payments and being an employer through Independent Lives, a user-led charity working with disabled people, people with care needs, and carers, to enable people to lead full, active and independent lives.

The charity is commissioned by the local authority to provide a range of services including Direct Payment information and advice, banking administration, payroll and recruitment solutions, so they can ensure that managing your child’s Direct Payments is as simple and stress-free as possible. For more information, go to www.independentlives.org.

What should a Direct Payment cover?

A Direct Payment should be equivalent to the cost of the service run by the local authority. If there is no council service, you may have to negotiate over how much it would realistically cost to provide. Local authorities must make payments that cover the reasonable cost of buying a service to meet your family’s assessed needs. There should not be a standard ‘take it or leave it’ rate.

If you are planning to employ someone using Direct Payments, you will have legal obligations, so the amount you get must cover things like National Insurance (NI) payments, holiday and sick pay, as well as basic pay. It is also a legal requirement that you purchase employer’s liability insurance.

Remember, you really need to negotiate on the basis of a 57.6-week year, because anyone you employ has an entitlement to 5.6 weeks’ paid holiday and you will need someone else to cover while they are away – and they will need to be paid too!

Finding the right people

Finding the best people to support your child is really important. They need to be suitably qualified and experienced in caring for children with SEND, but it is equally important that they are able to establish a good rapport with your child, and that he or she likes them too! Some parents already have someone in mind who knows their child, or you may want to ask for recommendations from friends, but other parents advertise locally or use a care agency to help them.

If you are going to advertise for a PA but you’re worried about the process, Independent Lives has lots of advice and resources, including templates for writing job descriptions, adverts, letters and interview questions. For further information, visit www.independentlives.org/services/direct-payment-support-services/recruitment. You can also find a list of Ofsted-registered childminders at www.childcare.co.uk.

You probably won’t want to meet everyone who applies for a PA role, but once you have looked at all the applications you can draw up a shortlist of people to meet. You will also need to act in accordance with equal opportunity legislation.

Working with a care agency does have its advantages – they normally have a pool of people to draw from, which means you are more likely to get cover if your main carer is unwell or you want different carers for different times of the week. They also handle administration like HR, training and payroll. However, PAs from agencies do cost more as you are paying the agency as well as the PA. This may impact how many hours per week you can afford. There are a large number of private care agencies in West Sussex – too many to list in this book. We would therefore recommend asking other parents which agencies they’ve used and search for them online.

Being an employer

Many parent-carers feel a little daunted about being an employer, but it doesn’t need to be complicated. If you are concerned about it yourself, Independent Lives runs a payroll service. They can manage tax deductions, National Insurance contributions, holiday and sick pay, and will provide you with a pay slip for your employee every month. This service does cost extra but will be allowed for in the Direct Payments you receive.

If you would prefer to run payroll yourself you can do this using HMRC’s free payroll software, Basic PAYE Tools, which can be downloaded online at www.gov.uk/basic-paye-tools.

Keeping track of how you spend the money doesn’t need to be a burden either. You will need to open a bank account just for Direct Payments. The law says that local authorities must check that the money you are given is used for what has been agreed, so using Direct Payments does require you to keep accounts and records of how the money is spent. But you should not have to make weekly or even monthly returns if this doesn’t make sense in your circumstances.

Preparing for adulthood

What changes at 16?

Generally, there is an expectation that parents are responsible for their child’s ‘keep’ up to the age of 20. So, as long as your child stays in full-time education at school or college or certain types of approved work-based training, under the current system you can continue to claim the following benefits for them.

▶    Child Benefit, as long as a parent’s individual income is no greater than £80,000 a year (although high income rules affect those earning £60-80,000 – for further information, visit www.gov.uk/child-benefit-tax-charge

▶    Additional elements for a dependent child or young person as part of Universal Credit, or Child Tax Credits (if you do not yet claim Universal Credit)

▶    Additional amounts paid for a child or young person through legacy benefits such as Income Support, Jobseeker’s Allowance, Housing Benefit and council tax support

Details of what qualifies as approved education or training can be found at www.gov.uk/child-benefit-16-19.

What you must do

To ensure that these payments continue, you must notify the relevant benefits offices that your child is continuing in education or approved work-based training after Year 11, otherwise they will automatically assume a young person will leave education the summer after they turn 16.

We have heard from parents in West Sussex who did not know this and found themselves in a tricky situation as their Child Tax Credits stopped. Because young people must stay in education or training until they are 18, they thought that their Child Tax Credits/additional UC allowances for a dependant child would continue automatically, but they don’t.

To ensure that you have continuity in your benefit payments, you must let your benefits office know that your young person is staying in full-time education, and what course they will be studying, no later than August 31. You must do this every summer until your child finishes their further education – usually when they are 19. The Child Benefit Office should send you a form to fill out to say that your child is staying in education or training. If you do not return it, your Child Benefit will also stop.

This is an example of things that can catch parent-carers unawares, and it also highlights the need for good planning. At some point in the near future your benefit payments may reduce if your young person leaves home to live more independently. Start thinking about how you will manage without your child’s contribution.

When should a young person claim benefits as an adult?

When a young person reaches 16, they have the right to manage their own money or ask someone else to do it for them. This means that young people have the option to claim benefits in their own right, which can be the key to your young person getting other sorts of financial help.

If your child can manage their own money, it makes sense for them to claim PIP themselves at 16. Even if they do, they can still be considered a child for the purposes of other Universal Credit allowances and Child Benefit.

Usually you need to be 18 to claim Universal Credit but special rules allow some 16 and 17-year-olds to claim, including some disabled young people, who can claim if they get DLA or PIP and they are also assessed as unfit to work. This means that most young people in full-time education need to go through a medical assessment known as the work capability assessment before they can receive Universal Credit.

If your child claims Universal Credit in their own right, you will lose any benefits you get for them, even if they remain in full-time non-advanced education or approved training. So you will need to weigh up whether it’s best for your young person to claim or for you to continue claiming benefits for them. The decision you make will depend on your circumstances. You will need to compare what you get now, claiming with your child as a dependant, against what they will get if they claim in their own right. If they do claim their own benefits, how much will you lose?

Reasonably well-off families who don’t qualify for the child element of Universal Credit or receive just a small amount may find that their household is better off if their young person claims benefits in their own right. Those on lower incomes who get more Universal Credit may be worse off if their young person claims benefits in their own right, as you could see a reduction in your allowances overall.

To get a clear picture of what is best for your family, it is sensible to get expert advice before you make any decisions. For benefits advice available locally, see our directories. You can also ask a number of national organisations for information and advice, such as Cerebra (https://cerebra.org.uk/download/money-matters-a-guide-for-parents), Contact (https://contact.org.uk – search for ‘benefits’ or call their helpline on 0808 808 3555), National Autistic Society (www.autism.org.uk) and Scope (www.scope.org.uk – search for ‘benefits’).

Work Capability Assessments

Please note that, at the time of writing, the government is reviewing Work Capability Assessments and changes are expected in 2026. We would therefore recommend parents cross reference-the information we provide against the latest government guidance, which can be found at: www.gov.uk/universal-credit.

If your child wants to claim Universal Credit at 16, they may have to have a Work Capability Assessment. This places people in one of the following three categories.

▶    Fit for work

▶    Limited capability for work – you can’t work now, but you can prepare to work in the future, for example by writing a CV

▶    Limited capability for work and work-related activity – you can’t work now and you’re not expected to prepare for work in the future

If your young person is severely disabled and it is decided that they have limited capability for work, they will get the limited capability for work and work-related activity component of Universal Credit. For further information about Universal Credit for young people, go to https://contact.org.uk/wp-content/uploads/2021/03/universal_credit_young_person.pdf.

What if your child can’t manage their own money?

A young person can claim benefits in their own right even if they need someone else to act on their behalf. Awards for DLA are usually reviewed in the five months before a child reaches 16. PIP can be claimed once a young person is 16. Claiming PIP at 16 is often the first time young people have to think about their ability to manage significant amounts of money.

In reality, most disabled young people don’t feel ready to take on this responsibility and ask their parents to look after their money for them, pay their bills and give them an allowance. This means parents take on the role of ‘appointee’, who acts on a young person’s behalf in all benefits matters, not just PIP. This includes telling the Department for Work and Pensions (DWP) about any changes in their circumstances, banking benefit money for them and using it in their best interests.

Before an appointee is agreed, the DWP may arrange to visit both the disabled young person and the person (often the parent) making the application to act on their behalf. The DWP has to agree that a young person is not able to act on their own behalf.

If you haven’t had a letter from the DWP to ask whether you will be your child’s appointee, call a few months before your child turns 16.

Tips for planning ahead

Talk to your child about the pros and cons of managing their own money and how much of it they want to practise budgeting with. Agree how it will be split – how much will be pocket money, how much they will contribute towards the help you give them and what they will save.

When you arrange the DWP visit, make the representative aware of your child’s communication, learning or mental health problems and whether they’re careless about money or vulnerable to financial abuse.

What should your child pay towards their ‘keep’?

Once your child starts claiming benefits, it’s a good idea to agree how much they will contribute to the household bills and how much they’ll pay towards the care you give them, and other stuff like running them around in the car. That way, any changes in either of your financial circumstances shouldn’t leave you out of pocket and the young person will get a better idea of how much it costs to live and how far their money goes.

Personal Independence Payment (PIP)

Please note that, at the time of writing, the eligibility criteria for PIP are being reviewed by the government and expected to change in 2026. We would therefore recommend that parents and young people making an application for PIP should cross-reference the information we provide against the latest government guidance, which can be found at: www.gov.uk/pip.

Before your child turns 16, the DWP will write to you asking if your child requires an appointee, and whether payments should continue to be paid to you or to your child once they turn 16. When your child turns 16, the DWP will inform you by letter that DLA will be ending and invite your child to make a claim for PIP. It’s important to make a new claim for PIP within four weeks of receiving this letter for DLA payments to continue until a decision for PIP has been made.

What is PIP?

Personal Independence Payment or PIP is a benefit for people between the age of 16 and pension age who face extra challenges carrying out everyday activities or getting out and about. Like DLA, PIP is not taxed or counted as income for means-tested benefits. It’s not based on National Insurance contributions and can be paid to people who are in or out of work.

Special rules

If a person is diagnosed with a terminal illness and is not expected to live more than 12 months, they can claim PIP under special rules. Though claiming benefits is likely to be the last thing on your mind if you’ve just been told your child has such a poor prognosis, it is a good idea to try to claim it on their behalf as soon as you feel able – PIP can’t be backdated to before the day you actually claim it, even in such distressing circumstances.

Claiming PIP under special rules means that you don’t have to wait three months and don’t have to fill in the ‘How your disability affects you’ form. Instead, if you call the dedicated team on the number below, they will ask you some questions. You won’t have to attend a face-to-face assessment either.

If PIP is awarded on these grounds, a young person will automatically be awarded the high rate care component. To claim under special rules, call the dedicated team at the DWP on 0800 917 2222.

To make your claim, call the PIP claim line and organise for your doctor or consultant to send the DWP a medical form called an SR1.

A passported benefit

Like DLA, PIP is a passport to disability premiums. If a young person is included in your Universal Credit claim, a disabled child premium will be payable on top of any child allowances. Under Universal Credit, benefits are capped at around £22,000 a year, but for households who have a person claiming PIP this cap does not apply.

If a young person is entitled to the daily living component of PIP, someone else may be able to claim Carer’s Allowance for looking after them. Getting the higher rate of the mobility component will entitle a young person to access the Motability scheme and a Blue Badge.

What’s different about PIP?

PIP is paid in two parts: a mobility component based on a young person’s ability to get around, and a daily living component based on their ability to ‘look after themselves’.

Each component of PIP will be paid at one of two rates, known as the standard and enhanced rate: the DLA care component currently has three. Realistically, this means that if you are already getting the lower rate of the care component, you are more likely to be at risk of being turned down for PIP. The weekly payment rates for PIP are the same as the rates payable for DLA.

DLA rules allow for some people with certain conditions to automatically qualify for DLA components at specific rates. Under PIP, no one (other than people who are terminally ill) will have any automatic entitlement. Nearly all awards will be time-limited, with very few indefinite awards. It is likely that most awards will be shorter and reviewed more frequently than awards for DLA.

PIP includes a broader range of practical skills than were included under DLA. For example, handling money, understanding how much change to expect and budgeting are new key tasks.

PIP shines a torch on social skills by asking about the person’s ability to mix and get on with others. It’s easier to know where to include how a young person struggles to ‘read’ other people’s intentions or understand how what they say and do can have an impact on how others feel towards them.

PIP uses an entirely new set of criteria, a points-based system, to decide whether someone qualifies for the benefit and, if they do, at what rate they will be paid. For most young people the new assessment process will also involve a face-to-face meeting with a health professional.

When will a young person need to claim PIP?

If your child is 16 or over and they have never claimed DLA, they will need to claim PIP. If your child is 16 and their existing DLA award is coming to an end, but you have not been sent a DLA renewal form, you will get a letter to tell you when and how to apply for PIP.

You cannot apply for PIP until your young person is 16, so there will be special arrangements allowing current DLA awards to run on after your child’s birthday, until a decision is made on their PIP claim. We understand that these claims will be looked at by a specialist team of decision-makers.

As appointee, you need to act quickly when the Department for Work and Pensions (DWP) writes to you or your child about PIP. If neither of you replies to the invitation to apply within 28 days, their DLA award will be suspended. If a claim is made less than four weeks after the suspension, the DLA award will be restored until a decision is made on the PIP claim. If you do nothing during the four-week suspension, your child’s DLA will end permanently eight weeks after they wrote to you. There are only limited rights to appeal against this decision.

How to start a claim

Ring the Department for Work and Pensions (DWP) on 0800 917 2222. You can call on behalf of a young person, but they should be with you when you do this. If you are the child’s appointee, the child does not need to be present. The child will need to be present if they do not have an appointee. This applies to new claims for PIP without a previous DLA award.

It’s worth getting organised before you ring. You will be asked for basic details like your child’s name, address, date of birth and main area of difficulty. You will also need to give your child’s National Insurance number and their doctor or health worker’s name, and have information to hand about time your child has spent abroad or in a residential school, care home or hospital. The DWP will also ask for bank or building society details.

As long as a young person has had the additional needs for at least three months, expects to have the same needs for at least the next nine months and meets the residency test, they will be sent a ‘How your condition affects you’ form. The claim pack is personalised. It comes with notes to help you fill it in.

Making a strong claim for PIP

PIP uses a points-based system to decide whether someone qualifies for the benefit and, if they do, at what rate they will be paid. To make a successful claim for PIP, a young person needs to score eight points to qualify for either the daily living or mobility components. 12 points or more qualifies them for the enhanced rate.

This new type of assessment will focus on a young person’s ability to carry out everyday activities. There are ten daily living activities, two mobility activities and a set of descriptors for each; what a young person scores against each activity should reflect the difficulty they experience in the following areas.

▶    Preparing food

▶    Eating and drinking

▶    Managing treatments

▶    Washing and bathing

▶    Managing toilet needs or incontinence

▶    Dressing and undressing

▶    Communicating verbally

▶    Reading and understanding written information

▶    Mixing with others

▶    Making decisions about money

▶    Planning and following journeys

▶    Moving around

The number of points a young person scores in the last two categories determines if they’ll get the mobility component, and at which rate. Scores in other categories determine whether they get the daily living component.

Each activity has a list of descriptors with different scores. Some activities attract more points: speaking, eating, and planning a journey carry more weight than activities like budgeting, planning a meal and washing. You can only be awarded points for one descriptor in each activity, so it’s worth giving as clear a picture as you can. To get any points for an activity, you need to satisfy at least one of the descriptors for at least 50 percent of days.

The assessment asks you to explain the challenges a young person faces doing a task safely, to an acceptable standard and as often as they need to, as well as the individual way they tackle a task when they don’t have someone to help and have to ‘get by’. It’s important to focus on these prompts.

Tips for claiming PIP

▶    Do your best to ‘tell it how it is’. Young people are often the ones who know how their illness or disability affects them, and most will be invited to a face-to-face assessment, so think about how you can involve them in making the claim

▶    Gather evidence, advice, assessments and/or reports from health, education or social care practitioners. If your child has an EHC Plan, make sure you have a copy

▶    Include as much supporting information as you can with the claim. If possible, send evidence to support what you’re saying. Copies of things like diaries, medical reports, speech and language assessments and EHC Plans are often useful. These may help to persuade a decision-maker

▶    Make photocopies of everything you send (both the claim pack and any extra evidence) – you will need to refer to them if you want a decision looked at again, or when the claim is reviewed

▶    Keep copies of everything in a safe place – you may not have any paperwork returned to you before a face-to-face interview. It can also help you the next time your child’s PIP is reviewed, as they may have left school or college, and evidence of their level of need and abilities will be harder to come by

▶    Think about returning your claim by Special Delivery. It protects you from the claim getting lost in the post or the DWP saying they haven’t received it, as you get a receipt for a Special Delivery item from the Post Office and the DWP has to sign to say they’ve received it

PIP applications are time-consuming and detailed, so it’s worth getting help to fill them in. Disability Rights UK has a very helpful guide to making a PIP claim that includes the scoring system for the 12 activities – go to www.disabilityrightsuk.org/personal-independence-payment-pip.

Unpicking the jargon: what counts as help?

▶    You will be assessed as able to carry out an activity unaided (and that means score no points for it) if you can carry it out without the use of an aid or appliance; or supervision, prompting or assistance. These terms carry very specific meanings within PIP regulations

▶    Assistance means physical ‘hands on’ help; it does not include spoken encouragement or explanation

▶    Supervision means the ‘continuous presence of another person for the purpose of ensuring (the disabled person’s) safety’

▶    Prompting is ‘reminding, encouraging or explaining to another person’. It doesn’t explicitly require the presence of another person, but must be essential for the activity to be carried out. So, for example, the other person might be at the other end of the phone

▶    Aid or appliance is any device that improves, provides or replaces a disabled person’s impaired physical or mental function, including prostheses. Examples might be adapted cutlery, modified kitchen utensils, a standing frame, communication apps, grab rails. They count even if the claimant doesn’t use the aid but could be ‘reasonably expected’ to use one but does not for reasons of cost, availability or cultural reasons

▶    Unaided relies on a disabled person being able to carry out the activity ‘in a way that is safe and reliable, does not take too long and can be repeated as needed’. If they cannot, another descriptor must be chosen and ultimately the individual may be considered to be unable to complete the activity at all

Don’t leave it up to an assessor to have to guess. It’s always worth giving a very detailed account to explain what happens in reality. For example, to get the higher rate of the mobility component and score 12 points on grounds of physical impairment alone, you will need to provide evidence that a young person who ‘can stand and then move a metre, cannot move more than 20 metres, either aided or unaided’. This is a tougher threshold than DLA, where the distance is 50 metres.

The next descriptor, that a young person may be able to walk more than 20 metres but no more than 50 metres, only scores 10 points. This is not enough to get the higher rate under PIP or to access Motability or a Blue Badge. Remember, though, that this descriptor can only be applied if a young person can do this safely, to an acceptable standard, repeatedly and in a reasonable time. If you can explain how a young person cannot meet one or more of these additional requirements, it is likely that you can reasonably argue the descriptor that best fits is the one that attracts 12 points.

This means that, using her walking frame, Zoe may be able to walk 160 metres at best, but it would take her 35 minutes. Then she would not be able to walk any further for several hours. So on a good day, it would take Zoe at least 155 minutes to walk 161 metres. It could be argued that Zoe cannot maintain this level of activity ‘repeatedly’ or ‘in a reasonable time’. She certainly cannot do it even once without her walking frame.

If a young person has good and bad days, it really helps to explain this too. Describing exactly what they can do two days out of seven and what they can manage on the other five helps the assessor work out which descriptor (and so how many points) best reflects a young person’s abilities. Points will be awarded for the descriptor that best fits 50 percent of the time.

As with DLA, PIP claims are unlikely to be successful if you don’t give examples. Many of us have found that we’ve had to add additional sheets of paper to explain the help our child needs in sufficient detail. The clearer the picture you can give, the less likely it is that a young person will be called for a face-to-face assessment.

In addition to the disability rights guide mentioned previously, Contact provides resources on claiming PIP, including a downloadable guide. Go to https://contact.org.uk and search for ‘benefits and money’.

Face-to-face assessments

It is unlikely that severely disabled young people will be asked to attend a face-to-face, telephone or video call assessment. However, to avoid unnecessary interviews, be sure to send as much supporting evidence as possible, and give a detailed account of how they cope with daily activities, their communication or access needs. Most other young people will be required to attend a face-to-face assessment. For most claimants and especially disabled young people, this is likely to feel overwhelming. There is a lot you can do to make it a fair and positive experience.

A young person should always have someone to support them and may need help to think about who is the best person to ask. It needs to be someone who is both ‘on their side’ and understands how their disability impacts on everyday life. This can be a friend, support worker, or health, education or social care practitioner. Most often it is likely to be you, their parent-carer.

It’s really worth preparing for this meeting. Start keeping a diary so you can illustrate what your child can do and the help they need. A young person may not have had much involvement in writing their PIP claim and, even if they have, the last time either of you looked at it will have been months ago. So read through it again together. Spend a bit of time asking and answering ‘open’ questions like “Can you tell me how you would make a cup of tea?” and “How did you get here today?,” but don’t practise too much.

Assessments may happen at your home or at an assessment centre. If you need to travel, plan how you will get to the venue. If a young person is very anxious it may even help to practise the journey and check out the building a few days before for things such as accessibility. Travel expenses will be reimbursed, so keep receipts or note mileage if you come by car. Parking charges are covered too.

On the day, arrive in good time. Make sure you are both feeling as comfortable and calm as possible. We understand that you can make a record of what is said at the meeting but you have to be able to give a copy to the assessor, and it makes sense to say well in advance if you’d like to do this.

The health care professional who carries out the assessment will want to see how what is written on the PIP form matches up with the young person they are meeting. If a young person struggles to ‘follow’ the thread of a conversation or is likely to misunderstand what other people say, you will need to act if you notice this is happening. Doing this in a clear, positive way, by repeating and phrasing questions more simply, using words they know, checking back that they really understood the question and everyone else has understood what the young person is trying to explain, will help the assessor to understand what the difficulties are.

Often, a young person will have a very good idea about what is difficult for them and how they manage. But even so, some may say what they think the healthcare professional wants to hear. You will be able to add to and comment on what a young person says if you feel their own perception of their abilities is unrealistic. It helps to give real examples of occasions when a young person hasn’t had the help they needed and things haven’t gone well or routine daily activities didn’t get done at all.

It’s important that the assessment goes at a comfortable pace and it’s okay to ask for a break, if a young person needs one. Be aware that the health care professional will observe and note everything: from whether a young person lets a door go in your face as you come into the room, to how they put their coat on.

If there is any sort of physical examination, a young person should not feel pushed to do more than they can safely manage or anything that is painful. Agree beforehand how they will tell you or signal that they cannot carry on.

Towards the end of the assessment, the health care professional should give a summary of their findings and ask if there are any questions, or if there is anything more you would like to add. Later, they will write a report and send it to the DWP.

The decision about whether to award PIP, at what rates and for how long is made by the DWP. You will be contacted by letter about the outcome.

What happens if you do not agree with a decision?

The outcome letter will explain what to do next if you do not agree with a PIP decision and about timescales. The first thing to do is to contact the DWP – you can do this over the phone. Say what it is that you do not agree with and why. It may be that you feel a young person should be entitled to the enhanced rate for the mobility component rather than the standard rate. Or maybe you disagree with the length of the award. Always be aware that when you ask for a claim to be looked at again, the DWP can look at both components as well as the length.

If no award is made at all, you should get a phone call from the DWP to explain why. You should ask that another decision-maker look at the claim – this is called ‘requesting a mandatory reconsideration’. If you ask, the DWP must do this. Ask for copies of all the information, including any reports submitted by the health care professional. This can help you build a case. Say you will write to give detailed reasons why you disagree.

Go through the paperwork carefully and note if there is any difference of opinion between what you put on the claim pack and the health care professional’s report, if any evidence has been disregarded or if you need to gather more reports to support what you say. Ask for extra time if you need it and say when you will write back to them. Otherwise a decision may be made straight away.

The right to appeal a PIP decision only arises once a different decision-maker has reviewed all the information and you have the outcome in writing. Hopefully, the first decision will be revised in your child’s favour and you won’t need to go to appeal. But even if it isn’t, all is not lost.

Whether or not the decision is changed, you will get a mandatory reconsideration notice, which you will need to send in with your appeal. You have one calendar month to submit the appeal, which is made to the Social Security and Child Support Tribunal. To appeal online, go to www.gov.uk/appeal-benefit-decision/submit-appeal. Alternatively, you can appeal by post by filling in the form SSCS1 Notice of Appeal, which you can download from the link above. Whichever method you choose, say clearly what part of the decision you disagree with and why, send it back within the one-month timescale and make sure you keep a copy for your records.

You will get a pre-hearing questionnaire. It’s best to opt for a face-to-face hearing – your chances of a favourable outcome are much greater if you do. You do not need to take someone like a solicitor to represent your young person. Experience of DLA appeal tribunals tells us that parents and carers are generally best placed to ‘tell it how it is’ and say it from the heart.

If you have other supporting evidence, send it in at least a week before the hearing. If you only get a report the day before, take it with you and explain about this, as it is usually the case that the tribunal panel will accept evidence on the day. Hearings are informal and you will be able to comment on and add to what your child says. It’s always best to prepare again as you did for the face-to-face assessment with the health care professional.

Financial planning, wills and trusts

Perhaps one of the hardest parts of being a parent-carer is knowing that one day you won’t be around to look after your child. It is natural to worry about what will happen to them and how they will cope without you, especially if they have a disability that means they are unlikely to be able to live independently.

One of the most important things any parent can do is to ensure that they have made a will and that they have named a guardian, in case anything happens to them before their child(ren) reach adulthood. This should include named:

▶    Executor(s) (preferably two or more): these are the people who make sure your will is followed

▶    Guardian(s) can make decisions about the child’s care after the death of the last parent. You should include any details about where you would want your child(ren) to live, but this does not necessarily have to be with the guardian

▶    Trustee(s) if you choose to set up a trust for your child (see below)

They can be family, friends, a paid professional or a combination of these, and you may name the same person or people for more than one role. It is important that those named understand their responsibilities and that you discuss this with them.

It’s easy to assume that this is all that needs to be done, but if you have a young person with a disability, it’s not quite as straightforward.

Even if your child might manage their own money, there is also the need to consider that their disability could leave them open to financial exploitation by others. Leaving your child money or property could also prevent them from claiming means-tested benefits.

Some families think they can cover this by leaving all their money to the sibling of their disabled child. They assume that an informal agreement in which the sibling promises to look after the disabled person for the rest of their life will be enough. But this is a risky idea as, officially, the money would be the sibling’s. If they die first, get divorced, or simply decide that they have changed their mind, your disabled child could be left with nothing.

What can you do?

In order to ensure that your disabled child is provided for, you may want to consider setting up a trust. This is a formal legal agreement that sets out what will happen to your assets (your money and property) after you die, and how the money will be used to benefit the disabled person.

A trust has two or more people, called ‘trustees’, who hold the money on behalf of the disabled person, who is called the ‘beneficiary’. The trustees are named in your will. When your will is written, you also write what is known as a ‘letter of wishes’, which explains to the trustees how the money should be used. For example, you may want to include the sorts of activity that your disabled young person enjoys and the therapies and services that you would like them to benefit from, using the money in the trust.

When a trust is first set up, you may be asked to make a small payment (usually around £10) to open it. The trust will only become fully active once you have died and your assets, such as your savings and money from property, are added.

You can find out more about wills and trusts through Mencap (www.mencap.org.uk), who have produced a free guide and can also signpost you to experienced local solicitors.

To ensure that you choose the right type of trust for your young person, it is important that you choose a solicitor with the right qualifications and experience. This is a highly specialised and complex area of law, so we suggest that you check that the solicitor is a member of The Society of Trust and Estate Practitioners (STEP) – see www.step.org or call 020 3752 3700.

Section two: Finding your way

Social life and travel

Having a child with SEND can mean that our family life is very different to the one we had imagined and it can bring extra pressures. When you have to make time for appointments, phone calls or therapy sessions, it is very hard to find the time for ordinary things, especially if you have other children. At first, many of us find it difficult to get any sense of normality. But we realise how important it is to try to do things as a family.

Not everyone has a traditional nuclear family. Some of us also have to deal with being a single or lone parent. This can be especially hard if your child’s condition is one that makes it difficult to ‘fit in’.

We know that getting out and about can be difficult. You may feel worried about lots of things: how to get there, whether your child will be accepted, how to deal with problems and also how to deal with people being judgemental about your child and their condition, especially if it affects their behaviour.

However, finding social activities that your family can enjoy can help restore normality. Most of us have found places where everyone can join in – the local swimming pool, parks, local farms, zoos or quieter beaches where you and your family won’t have to worry about what others think.

Often, parents who have children with similar conditions to yours are easier to be with, as they understand the challenges and you don’t have to explain. It’s also helpful to be able to chat to other people in a similar position so you can share ideas and tips.

Choosing leisure activities

Like everyone else, children with SEND want to have a social life and take part in activities they enjoy. But, as a parent, you want to know that they will be welcome, safe and supported. And if you have other children, it’s important that they can enjoy themselves too.

When you are thinking about new activities, you may have lots of questions. Do the people running the activity have experience of children with SEND? Do they understand what difficulties there may be? How will they ensure that my child can access the activity? Is there a safe place to let off steam? What are the rules and do they make sense to children? What’s in place to help a child deal with disappointment? Will my child be encouraged to do as much as they can for themselves but not left to struggle if they can’t manage? Will they have appropriate boundaries in place?

Sometimes the easiest way to find out is to sit in on a session to see how it is run. Also, ask other children, young people and parents what they think. Their views might offer different perspectives that enrich your impressions.

You may have to balance the value of a free or inexpensive opportunity for your child against the chance to have a break yourself. These are often the places to meet other parents and exchange advice and support.

It’s also worth asking the organisers if they offer a ‘taster’ session, as many do. This can be really helpful and many of us have found that it has encouraged us to try activities that may be completely new to us and our children. Once they’ve tried a session, ask your child how it went and listen to them – you are the expert at ‘reading’ your child, no matter how they communicate. If you sense that they have not enjoyed an activity, don’t give up. You may have to try a few before you find one that your child takes to.

Help with the cost of activities

CEA Card

The CEA Card enables a disabled cinemagoer to receive a complimentary ticket when visiting a participating cinema. Several cinemas in West Sussex are signed up to the scheme. The person applying must be at least 5 years of age and in receipt of DLA or PIP. For further information, visit www.ceacard.co.uk.

Horsham’s Leisure Access Card

This allows residents to save money on leisure activities and attractions across the Horsham area. To qualify you must live in Horsham and receive a benefit such as Carer’s Allowance or Universal Credit. If you are aged 16+ and a full-time student, you are also eligible. For further information, visit www.horsham.gov.uk/sport-and-leisure/leisure-access-card.

Max Card

The Max Card is available to families of children with additional needs and foster families. It offers discounts or free admission to leisure venues like cinemas, theatres, laser tag, paintballing etc. Participating venues in West Sussex include Amberley Museum, Bedlam Paintball, Chequer Mead Theatre in East Grinstead, the Dome Cinema in Worthing, Tenpin Bowling, Chichester and the Weald and Downland Museum. For further information, visit www.mymaxcard.co.uk.

Children and young people who sign up to the West Sussex Disability Register automatically receive a Max Card. The register, which is run by West Sussex Library Service, is used to help the local authority and other agencies better understand the needs of children and young people with SEND and their families. You can sign up to the register at: https://yourvoice.westsussex.gov.uk/disability-register-0-25.

Clubs and activities for children and young people

The following section lists some of the activities that we have found to be inclusive and open to all. Some have been set up where children and young people with and without SEND can have fun together – these are often referred to as ‘inclusive activities’ – while others are specifically for children and young people with additional needs. Entries with ‘SB’ next to their name are part of the current Short Breaks offer supported by West Sussex County Council.

Accessible Cinema Screenings: autism-friendly screenings take place at various cinemas around Sussex including Cineworld (Brighton, Chichester and Crawley), The Dome (Worthing) and Duke of York’s (Brighton). Lights are left on low, the sound is turned down and the audience is free to get up and move about as they please.

Active Sussex offers information and advice about opportunities for young people with disabilities to participate in sporting activities across Sussex, via their Sussex Disability Sports Network (SDSN). Sign up to SDSN newsletters for updates on inclusive provision in sports and physical activity. For further information, visit www.activesussex.org.

Adur Special Needs Project (Shoreham) runs out-of-school respite care and play schemes for children aged 5-15. For further information, visit www.adurspecialneedsproject.org.uk.

Allsorts Youth Project runs clubs and groups in West Sussex for LGBT+ children and young people. For further information, visit www.allsortsyouth.org.uk.

Angling4Education (SB) runs inclusive fishing and bushcraft sessions for children and young people with SEND. Some sessions are open to parents and carers, and they are also a provider of alternative provision for education. For further information, visit www.angling4education.com.

Ariel Othellos SEN (Burgess Hill, Crawley, East Grinstead, Horsham, Shoreham and Haywards Heath): inclusive performing arts sessions enhanced by a peer-buddy initiative. Dance, singing and drama classes for children and young adults with SEND. For further information, visit www.arielothellos.com.

Ashdown Children’s Centre (Worthing) (SB) offers family sessions, respite sessions for children with complex needs aged 5-18 and an inclusive youth club for 14-18-year-olds. For further information, visit www.guildcare.org/ashdown-club.

Aspens (SB) runs various groups for children and young people under 18 with ADHD, autism and learning disabilities. It also offers family fun days and a girl’s group. For further information, visit www.wsxshortbreaks.aspens.org.uk.

Brighton & Hove Albion Foundation (SB) - Carer’s tickets are available for club matches for anyone who needs a personal assistant to attend. There is also an inclusion room in the stadium and a radio-based assistive hearing system. The foundation also runs disability-specific football for anyone aged 5 or over. Sessions are delivered after school, at weekends and during school holidays. For further information, visit www.bhafcfoundation.org.uk.

Crawley BMX Track is an inclusive track run by Wheels for Well-being that has specially adapted bikes and part-time instructors. For further information, visit https://crawley.gov.uk/culture/sport-and-leisure/inclusive-sport/disability-sessions.

Challengers (Chichester Youth Scheme) (SB) is a club for disabled teenagers aged 13-18. Young people can take part in activities such as bowling and swimming, or take a trip on the minibus to the zoo or soft play. For further information, visit www.disability-challengers.org/youth.

Chanctonbury Community Play Scheme (Worthing) is a local charity that provides a fun and inclusive playscheme during the summer holidays. They accept applications from children and young people aged 5-19 with a current EHC Plan. For further information, visit www.facebook.com/ccpsplayscheme.

Chestnut Tree (Arundel) (SB) offers a range of short breaks for children and young people with life-limiting and life-threatening conditions and their families, including use of the hospice for short breaks, days out and activities for the whole family and at-home support provided by a Chestnut Tree key worker. For further information, visit www.chestnut-tree-house.org.uk.

Cobnor Activities Centre Trust (Chichester) offers accessible paddling, sailing and archery for children and young people who are wheelchair users or have learning disabilities. For further information, visit www.cobnor.com.

Chichester Fencing Club offers inclusive and wheelchair fencing sessions at Chichester High School for Girls on Friday evenings. For further information, visit www.chichesterfencingclub.com.

Crawley Town Community Foundation runs a range of inclusive sports and football sessions for children, including free Premier League Kicks sporting activities and projects for ages 8-18 at a range of venues in the surrounding area. It also runs Crawley Town Flyers, a pan-disability football team, which has three teams in the Sussex Disability Football League. For further information, visit www.ctcommunityfoundation.com.

CYCALL is an inclusive cycling project based at Brooklands Park in Worthing. It offers adapted bikes and activities for children and adults. For further information, visit www.cycall.info.

Downsman Bowls Club (Crawley) incorporates Crawley Blind and Disabled Bowlers and is for people of all ages and abilities. They are wheelchair accessible and can provide specialist equipment if needed. For further information, visit www.downsmanbowls.co.uk.

Family days out: there are a number of nearby places that we have found very enjoyable for our children and for a day out with the whole family, such as The Aldingbourne Centre, Drusillas Zoo (Alfriston), Ferring Country Centre, Fishers Farm (Wisborough Green), Tilgate Park (Crawley), the Wildfowl and Wetlands Trust (Arundel) and Washbrooks Farm (Hurstpierpoint). An increasing number of venues have Changing Places fully accessible toilets, with adult-sized changing benches and a hoist, including the Aldingbourne Centre, Drusillas, Tilgate Park and the Wildfowl and Wetlands Trust.

Ferring Country Centre (Worthing) offers riding therapy for children and adults with a wide range of disabilities. It also provides training and work experience for adults (18+) with learning disabilities upon referral. For further information, visit www.ferringcountrycentre.org.

Flipout (Chichester) offers trampolining, and a dedicated SEND session on Sunday afternoons. For further information, visit www.flipout.co.uk.

Footloose Dance Group (Crawley) is a weekly term-time dance and movement class for older teenagers and adults with learning disabilities. For further information, visit www.footloose-crawley.co.uk.

Girlguiding is fully inclusive and provides specialist funding and support to those with additional needs. It has a range of groups and activities for girls and women aged 4-30 and can provide an ‘accessible guiding grant’ to improve accessibility and participation. For further information, visit www.girlguiding.org.uk.

Golden Lion Children’s Trust organises days out for children and young people with special needs in and around the Gatwick area. For further information, visit www.glct.org.uk.

Gym Joeys (Bognor Regis): preschool gymnastics to help to develop gross motor skills. Welcomes children with additional needs. For further information, visit www.gymjoeys.com.

Head2Head Theatre: relaxed, multi-sensory theatre performances and storytelling for families. For further information, visit www.h2hsensorytheatre.com.

Horsham District Junior Disability Swimming Programme is run by Horsham District Sports Development for disabled children and young people. For further information visit their site at www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities and click on ‘inclusive swimming lessons’.

Horsham District Council Reaching Higher Project (SB) offers various arts and sports activities for children and young people with additional needs aged 5-25, including siblings. Activities include athletics, cricket, dance, digital/video production, DJing, inclusive football, play sessions, music and karaoke and rebound therapy. For further information, visit www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/reaching-higher-project.

Kangaroos (Haywards Heath) (SB) runs various clubs and activities for children with SEND, tailored to different ages, abilities and levels of need. These include Stay and Play (ages 0-5), holiday, weekend and after school clubs for children and teens, and a Youth and Social club (18-25s). They also run STARS weekend and holiday clubs for children and young people aged 6+ with complex needs and limited mobility. For further information, visit www.kangaroos.org.uk.

Letterbox Library is a book club that specialises in celebrating equality and diversity. They have a selection of books that feature children with SEND as characters. For further information, visit www.letterboxlibrary.com.

Listening Books is an audiobook library for children and adults who find reading difficult because of illness or disability. Readers pay a membership fee and can access titles as downloads, via streaming or as MP3 CDs. For further information, visit www.listening-books.org.uk.

Local libraries: you can register your child for their own library card as soon as they are born. Many libraries offer baby and toddler activities, such as story time, and a toy library. Some also hold regular sensory story sessions for children with SEND. If your child or young person has communication needs, you may be interested in West Sussex library’s communication library, Understand Me, which has free resources to borrow including flashcards, recording devices and other resources to support people who use Alternative and Augmentative Communication (AAC). To find your local library, visit www.westsussex.gov.uk/libraries.

Lodge Hill Centre (Pulborough) (SB): accessible lodges and an accessible activity centre. It holds regular activity days for young people aged up to 18 years with SEND and their friends and family. For further information, visit www.lodgehill.org.uk.

Mid Sussex Marlins Swimming Club runs two clubs for children aged 7+ at Dolphin Leisure Centre, Haywards Heath and the Triangle in Burgess Hill. For further information, visit www.midsussexmarlins.org/copy-of-squad.

MXT Swimming School (Storrington and Steyning) has swimming teachers experienced in working with children with autism, muscular dystrophy, ADHD, dysphasia, dyspraxia and cerebral palsy. All times are flexible during school holidays. For further information, visit www.mxtswimschool.com/swimming-lessons/sen-lessions.

Out of Bounds (Angmering) holds a range of SEND-friendly events including bowling, clip ‘n’ climb, soft play, adventure nets and adventure golf. For further information, visit www.out-of-bounds.co.uk/offers-events/send-event.

Parents and Carers Support Organisation (PACSO) (SB) in Chichester runs a number of after-school clubs, weekend activities, and holiday playschemes for children and young people with special needs (from birth to 25 years) and their families. For further information, visit www.pacso.org.uk.

Phab is a nationwide charity organising inclusive clubs and residential breaks for disabled and non-disabled people of all ages to come together with friends and family. A wide range of activities, events and holidays are available. For further information, visit www.phab.org.uk/clubs.

Regis Gymnastics (Bognor Regis) offers inclusive or one-to-one gymnastics lessons and rebound therapy sessions to children and adults with disabilities. For further information, visit www.regisgymnastics.com.

Riding for the Disabled Association offers lessons for children and young people at two centres in Arundel and Horsham. For further information, visit www.rda.org.uk.

The Scout Association is an inclusive organisation with sections for children and young people aged 4-25. It will develop individual support plans for children and young people with additional needs. For further information, visit www.scouts.org.uk/information-for-parents/scouts-with-additional-needs.

Southcoast Sports (Bognor Regis) offers weekly sports for children with SEND in Arun and Chichester. For further information, visit www.southcoastsports.org.uk.

Southwick Leisure Centre runs Mighty Mites inclusive soft play (0-5 years). For further information, visit www.southdownsleisure.co.uk.

Springboard Project (Crawley, Horsham and Worthing) (SB) has an inclusive and accessible stay and play recreation centre in Horsham for 0-8-year-olds, including soft play, sensory room and garden. They also offer SEND services including youth clubs and holiday activities for children and young people aged 6-12 in Crawley, Horsham and Worthing, 12-18 in Crawley and Horsham and 18-25 in Crawley and Horsham. For further information, visit www.springboardsupport.org.

Sunbeam Swimming Club (Horsham) is for disabled people of all ages (8+) and runs weekly at the Pavilions in the Park. For further information, visit www.sunbeamswimming.co.uk.

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs social events, support groups and residential breaks for children and adults. For further information, visit www.sasbah.org.uk.

Sussex Cricket has a charitable foundation that supports a range of inclusive and disability cricket groups in the community for children and adults at various locations in Sussex. For further information, visit www.sussexcricket.co.uk/sussex-cricket-foundation/disability-cricket.

Sussex Sailability is based at Sussex Yacht Club in Shoreham and caters for people aged 14+ with physical, learning and sensory disabilities. It has a hoist to lift people from wheelchairs to boats. For further information, visit www.sussexsailability.org.

The Sylvia Beaufoy Centre (Petworth) runs an inclusive youth club for children aged 9-19, offering a range of groups and activities including social drop-ins, DofE and a Greenpower Project. For further information, visit www.sylviabeaufoy.org.

Tadpoles Swimming Club (East Grinstead) is for people aged 12+ with various disabilities and diagnoses who would benefit from swimming and water therapy. For further information, visit www.tadpoles.info.

Wasps Disabled Archery Club (Lewes) provides archery coaching and competitions for people across Sussex with disabilities of all ages. For further information, visit www.sussexwasps.weebly.com.

WBC Cares UK – Adaptive Boxing Programme (Brighton and Hove) has group or one-to-one classes based at Brighton and Hove Boxing Gym. Caters for wheelchair users or people who train standing up. For further information, visit www.adaptiveboxing.org.

Wheels for ALL Inclusive Cycling provides a range of adapted bikes and trikes for people of all ages and abilities to enjoy cycling in Crawley and Horsham. For further information, visit www.wheelsforall.org.uk.

Worthing Lego Club runs monthly for children and young people with additional needs and their families at St John’s Church Hall. You can find the group’s page on Facebook.

Worthing Leisure Centre (South Downs Leisure) offers Aiming High trampolining sessions for people with disabilities and their siblings. All participants must have a parent or carer with them to supervise. For further information, visit www.southdownsleisure.co.uk.

Worthing Mencap (Sussex Seals) offers sports and leisure activities at Worthing Leisure Centre for people aged 16+ with autism or learning disabilities. For further information, visit: www.worthingmencap.org/sussex-seals.php.

Worthing Town FC runs more than 40 teams, including inclusive football teams for children with SEND (aged 8-16). For further information, visit www.worthingtownfc.com.

Woodland Wonders Forest School (Chichester and Horsham) offers woodland experiences and bushcraft sessions for young people with SEND and their families. For further information, visit www.woodlandwondersforestschool.co.uk.

YMCA East Surrey (SB) provides short breaks (weekends and school holidays) in Crawley, Horsham and Mid Sussex under their Yippee and Yip4Youth groups (ages 5-18) for young people with a wide range of disabilities and complex needs. In addition to their short breaks services, they also run Y Impact for young people aged 14-18 with mild to moderate disabilities in Horsham and Mid Sussex, and LifeWorks inclusive activities for those aged 16+ in Redhill and Reigate. For further information, visit www.ymcaeastsurrey.org.uk.

Clubs for older teens and adults

Many of the suggestions we have made in the previous section listing clubs and groups cater for young people up to 18 years of age and some up to 25 years. There are also a number of clubs and activities available specifically for older teens and/or adults.

Apuldram Centre (Chichester) runs the Hub Club, a social and activities club for adults with learning disabilities. For further information, visit: www.apuldram.org.

Arun Sunshine Group for Adults with Learning Disabilities (Littlehampton) is a social club meeting fortnightly on Sundays that offers arts and crafts, games and quizzes and days out. For further information, visit www.arunsunshinegroup.org.uk.

Blue Oasis Club (Horsham) holds club nights, autism-friendly film screenings and outreach for young people and adults with learning disabilities and their friends. For further information, visit: www.facebook.com/HorshamBlueOasisClub.

Blue Starfish Club (Worthing) runs club nights three times a year for people with learning disabilities aged 16+ to socialise and show their skills as DJs and musicians. For further information, visit: www.worthingmencap.org/bluestarfish.php.

Carousel (Brighton) runs inclusive creative arts projects and groups for young people and adults with learning disabilities. Includes film, dance, music and club nights. Delivers the Blue Camel Club run by people with learning disabilities and Oska Bright Film Festival. For further information, visit www.carousel.org.uk.

Chichester Festival Theatre has a youth group, Chichester Festival Youth Theatre (CFYT), with two sessions for young people with SEND. They meet on Wednesday evenings (Horsham) and Friday evenings (Chichester). For further information, visit: www.cft.org.uk/young-people/chichester-festival-youth-theatre.

Crawley Town Community Foundation runs Crawley Town Flyers football training for people aged 18+ with SEND, offering opportunities to join teams playing in the Sussex Disability Football League. Also provides ‘Move the Goalposts’ sessions for anyone aged 18+ who is at risk of or experiencing mental health issues. For further information, visit: www.ctcommunityfoundation.com.

Dream Night at the Zoo is a global initiative to provide cost-free, exclusive after-hours access to zoos for chronically ill or disabled children. The nearest participating zoo in Sussex is Drusillas. For further information on the 2025 Dream Night at the Zoo, visit www.drusillas.co.uk/dreamnight-2025.

Esteem runs a number of inclusive services for young people aged 18-26, including weekly The Drop-In where they can socialise with peers, structured activities such as mini golf and kayaking, counselling and walk and talks to boost wellbeing. For further information, visit www.esteem.org.uk.

Flamingoes Club (Crawley) is a swimming club for over-18s with physical or learning disabilities. Meets at K2, Crawley. For further information, visit www.crawleysc.co.uk/page/para-swimming/flamingoes.

Gig Buddies was founded by Stay Up Late, a charity that pairs up people aged 18+ with and without learning disabilities and/or autism who have similar interests, so they can go to gigs and other cultural activities together. It also runs Sports Buddies, which pairs up people to exercise and do sports activities together. For further information, visit www.gigbuddies.org.uk.

Grace Eyre Foundation offers free tennis coaching for over-16s with a learning disability in Crawley and Worthing, and adult multi-sports in Littlehampton. For further information, visit www.grace-eyre.org/what-we-do/learning-and-having-fun/sport.

Guild Care (Worthing) provides day and respite services for adults (18+) with learning disabilities and complex needs from their Birkdale and Fitzalan Howard Centres. They also run the Extra Club from the Fitzalan Howard Centre, which is a social and friendship group for young adults (18-30). For further information, visit www.guildcare.org.

The Point (Chichester) is a resource unit for people aged 18-50 with physical disabilities. It offers a variety of activities and trips. For further information, visit www.thepoint-chichester.org.

Ready and Able Sports Club (Horsham) is an inclusive sports and social club for people aged 18+ held at Bluecoat Sports Centre, Christ’s Hospital. For further information, search for ‘ready and able sports’ at www.horsham.gov.uk.

Springboard runs social groups for 18-30-year-olds in Crawley and Horsham. For further information, visit www.springboardsupport.org/send-services.

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs support groups in Burgess Hill, Crawley and Worthing, as well as a variety of social activities including trips to the pub, bowling and online activities for people with spina bifida and/or hydrocephalus. For further information, visit www.sasbah.org.uk.

Accessibility

For many families, outings and leisure activities have to be planned with care, especially for those of us who have children and young people with complex needs.

For trips out and about locally, your borough or district council produces leaflets about access, which can be a useful starting point. They have details of a range of accessible places locally, including disabled toilets, as well as mobility equipment like rollators and beach wheelchairs. The council also has information available on disability access in your area and can provide RADAR keys – which are used to open accessible public toilets, as well as certain play equipment in inclusive play areas – for a small charge.

Many of the larger theme parks, such as Legoland and London Zoo, offer concessions and organise special days for disabled children and their families, so contact them directly for details.

For trips to new places, The Rough Guide to Accessible Britain is helpful, as it contains hundreds of ideas for worry-free days out, with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people. Each entry contains all the access information you need to enjoy your day, including disabled parking and wheelchair access. You can download or read an online version of the guide for free at www.motability.co.uk/news-and-events/rough-guide-to-accessible-britain.

You can also find information and reviews on many attractions via AccessAble at www.accessable.co.uk, and on the Euan’s Guide website at www.euansguide.com.

Changing Places

Changing Places campaigns for fully accessible toilets that provide the space and extra equipment disabled people may need. The toilets include a height-adjustable adult-sized changing bench, a hoist and enough space for the person and up to two carers.

For a location map of all fully accessible toilets, as well as a journey planner that shows service stations with these facilities, visit www.changing-places.org.

Help with travel

Can I apply for a Blue Badge for my child?

A Blue Badge allows the holder to park in disabled bays. In England, you automatically qualify for a Blue Badge if any of the following apply.

▶    Your child receives the higher rate mobility component of Disability Living Allowance (DLA)

▶    Your child is registered blind

▶    Your young person scores eight points or more under the ‘moving around’ activity of Personal Independence Payment (PIP)

▶    Your young person scores ten points under the ‘planning and following a journey’ activity of Personal Independence Payment, because they are ‘unable to undertake any journey because it would cause overwhelming psychological distress to the claimant’ – you must score ten points specifically for this reason.

The Blue Badge is also available to families with children under two who, because of their medical condition, need to travel with bulky medical equipment or be close to a vehicle for emergency medical treatment.

In 2019, the criteria for those who may qualify for a Blue Badge was extended to include people with ‘hidden’ disabilities such as autism and learning disabilities who:

▶    Cannot undertake a journey without there being a risk of serious harm to their health or safety, or that of any other person

▶    Cannot undertake a journey without it causing them considerable psychological distress

▶    Have very considerable difficulty when walking (both the physical act and experience of walking)

For children and young people who don’t automatically qualify, it can still be worth applying as the local authority will assess their eligibility based on your application form and evidence from health and social care professionals who are involved with your child’s care. In these circumstances it can be very helpful to ask your child’s consultant to write a letter in support of your application.

Sticking to the Blue Badge rules

If you display the badge back to front, or with the expiry date hidden, you are likely to get a parking ticket. Most importantly, if your child is not in the car, it is an offence to display the badge unless you are on your way to pick up your child, or have just dropped them off.

You can get a Blue Badge application form by calling 01243 777653, or by downloading a copy at www.westsussex.gov.uk/bluebadge.

You can also use the mobility component of your child’s DLA to lease or buy a car or wheelchair under the Motability scheme.

Disabled parking bay scheme

If your child has problems with mobility and has a Blue Badge, you may be eligible for a disabled parking bay outside your house, as long as you do not already have off-street parking. It’s important to note that although it will be outside your house, the parking bay is available for use by anyone who has a Blue Badge. To apply, go to www.westsussex.gov.uk and search for ‘disabled parking bay’.

Disabled person’s bus pass

Anyone aged five or over with a ‘physical or mental impairment’ may be eligible for a disabled person’s bus pass, which offers free bus travel 24/7 for West Sussex residents whose journeys start or finish in the county. There may be time restrictions if the pass is used in other areas. Children and young people who are permanent West Sussex residents are eligible if:

▶    They have a disability or have suffered an injury that has a substantial and long-term adverse effect on their ability to walk

▶    They do not have arms or have long-term loss of the use of both arms

▶    They are blind or partially sighted

▶    They are profoundly or severely deaf

▶    They are without speech

▶    They have a learning disability

▶    If they applied for a driving licence (aged 17+), they would have it refused on the grounds of a medical condition

Passes are issued by West Sussex County Council. For more information and an application form, go to their website at www.westsussex.gov.uk and search for ‘Free Disabled Person’s Bus Pass’.

Companion Passes

If a disabled person needs someone to travel with them, you may be able to apply for a companion pass. The person applying for a disabled person’s bus pass must provide a report from a ‘medical specialist’ confirming that they need a companion to travel. It must be for one or more of the following reasons.

▶    Physical assistance on or off the bus

▶    24/7 attendance due to the person’s condition

▶    Assistance in planning or managing the journey

▶    Assistance in identifying the correct bus

The companion can only travel free if accompanying the person with a bus pass. To apply, complete the bus pass application’s section on companions.

Disabled person’s railcard

If you do not wish to have a disabled person’s bus pass, you may be able to apply for a disabled person’s railcard instead. While the railcard doesn’t offer discounts on child fares (15 and under), it will allow one person travelling with the cardholder to get a third off most rail fares. To check eligibility and apply, go to www.disabledpersons-railcard.co.uk.

If you are not eligible for a card, you can get discounts of up to 50 percent off fares if your child or young person is travelling in a wheelchair or they have a visual impairment or are blind. See ‘other discounts’ on the website.

National train travel

National Rail Enquiries provides information for disabled passengers about accessibility and train operating companies, and has accessibility maps to show stations with lift access to platforms and more. Go to www.nationalrail.co.uk or call 0800 022 3720 to arrange for assistance on a train journey.

You can also request passenger assistance via a new app called ‘Transreport’, which is available via the App Store and Google Play. For more, go to www.nationalrail.co.uk/stations_destinations/passenger_assistance.aspx.

Travelling to London

London can seem a challenging destination for disabled travellers, especially as many underground stations are unsuitable for wheelchair users.

The Transport for London (TfL) website at https://tfl.gov.uk offers information about accessibility to help people plan their journeys. They also have a number of accessibility guides that give details of step-free stations, lifts, accessible toilets and other useful information covering tubes, buses, river taxis and other forms of transport in the capital. Guides can be downloaded in PDF, large print and audio format from the TfL website.

Preparing for adulthood

There is more on this in the Travel for young people chapter.

Holidays

We all feel in need of a break every so often, but sometimes the thought of all the planning makes a holiday seem too much effort. There are several organisations that can point you in the direction of places that will be accessible and welcoming to everyone, whatever their needs.

3H Foundation (www.the3hfoundation.org.uk) runs subsidised group holidays for physically disabled children.

Contact (https://contact.org.uk) has a free downloadable guide to holidays, play and leisure activities for families of children with SEND.

Happy Days (www.happydayscharity.org) funds and organises holidays and days out for families with children with SEND aged 3-17.

Tourism for All (www.tourismforall.org.uk) has information about all sorts of accommodation and dining options, as well as a huge range of activities and autism-friendly and wheelchair-friendly attractions.

Increasingly, travel agents are able to provide better information on facilities for disabled people, as they begin to realise there’s a big market out there. You need to ensure that your child’s needs will be catered for, and it is worth asking for these arrangements to be confirmed in writing when you book. It’s amazing how many people still think that an entrance up half a dozen steps is accessible for a wheelchair user!

You should also make sure any insurance you take out is appropriate, as you might find that ‘pre-existing conditions or illnesses’ are not covered in the small print. You can find out about specialist policies from organisations such as Tourism for All and Cerebra.

Gatwick Airport

If you are flying with a person with SEND, it does require some extra planning before you go. If your child is a wheelchair user or has reduced mobility, it is essential to request special assistance before you travel. It is best to do this via your airline or travel agent when you book your tickets. Special assistance must be requested at least 48 hours prior to your journey.

If you require an eagle hoist to transfer your child from their wheelchair to their plane seat, this should be booked at least 24 hours before you travel by emailing lgweaglehoist@wilsonjames.co.uk with the following information: customer name and contact details, date of travel and flight details, passenger’s height and approximate weight and whether you have used the service before.

When you arrive at the airport, there are special help points where you can request assistance if you need help with a wheelchair or baggage. These are located on terminal forecourts, short stay car parks, stations, baggage reclaim halls and within the terminals where there are long walks.

Gatwick Airport has two fully accessible Changing Places toilets at both terminals. If you are departing from the North Terminal, go to the special assistance desk, who will escort you to use the toilet in Arrivals. Please allow plenty of time to get across the terminal.

Gatwick Airport also runs a Hidden Disability Assistance Programme. It is available to anyone with autism or another hidden disability such as a cognitive impairment or dementia, for example. The service provides sunflower lanyards, which are available from their special assistance desks. These identify the wearer as someone who needs additional support from staff. The website also has a link to an autism-friendly visual planner to use before and during your journey.

For passengers with disabilities such as autism, a cognitive impairment or dementia, there is a sensory room in the North Terminal. It’s free to use, but you must pre-book a slot on the website before you travel.

Gatwick offers other assistance to disabled passengers, including the Aira app for people with sight loss. They are also trialling a service for passengers requiring oxygen therapy. You can find out more about the full range of assistance available at www.gatwickairport.com. Choose ‘passenger services’, then ‘special assistance’.

Other places where you can use a sunflower lanyard

Heathrow, Stansted, Luton, Manchester and an increasing number of regional airports have also rolled out sunflower lanyards to discreetly flag to staff that the wearer has a hidden disability and may need extra support or assistance.

A number of shops have also come on board, including Tesco, Sainsbury’s, Marks and Spencer and Bluewater Shopping Centre. You can pick up a sunflower lanyard from their customer services teams.

Sunflower lanyards are recognised by staff across the rail network in England, Scotland and Wales. Passengers travelling by train can ask for one at many London stations, including Charing Cross, Clapham Junction, Cannon Street, London Bridge, Victoria and Waterloo. Lanyards are available from information points and ticket offices. For people who would rather not wear a lanyard, they also offer a sunflower ticket wallet, which gives you a discreet method of alerting staff as needed.

Alternatively, you can purchase a sunflower lanyard for a small fee from https://hiddendisabilitiesstore.com. For people who may find wearing a lanyard difficult, they also have other options, such as wristbands, badges and stickers. For people who may find social distancing difficult due to a visual impairment or learning disability, they offer items printed with ‘please give me space’, including cards, badges and lanyards.

Section three: Teens and adulthood

Planning for your child’s future

This section of our handbook covers additional topics of relevance during teens and adulthood. For subjects that are relevant throughout your journey, such as education, health, social care and money matters, preparation for adulthood is covered in section two, towards the end of each chapter.

Thinking about the future can feel overwhelming for parent-carers of a child with SEND. Picturing them as an adult can be especially difficult if you do not know how their condition will progress, or how their needs may change.

However, early planning for your child’s future will help you to ensure that they get the support they will need as they reach adulthood and move from children’s to adult services. This is known as ‘transition planning’. Thinking about what your child needs and how this may change as they grow will help you to make sure that their transition goes as smoothly as possible.

The SEND Code of Practice 2015 says preparing for adulthood should cover:

▶    Higher education and/or employment – this includes exploring different employment options, such as support with becoming employed and help from supported employment agencies

▶    Independent living – this means young people having choice, control and freedom over their lives and the support they have, their accommodation and living arrangements, including supported living

▶    Participating in society – having friends and supportive relationships, and participating in, and contributing to, the local community

▶    Being as healthy as possible in adult life

For further information, visit: www.ndti.org.uk/resources/preparing-for-adulthood-all-tools-resources.

The SEND system and your child

‘Young people with special educational needs and disabilities (SEND) have a right to additional support with education and training. The purpose of this is to try and level the playing field – so that, as far as possible, they can access the same opportunities as young people without SEND.’ – IPSEA

It was hoped that the changes in the SEN system that were brought in in 2014 would help schools and colleges to meet the majority of young people’s needs through their own SEN Support programmes.

As part of this, schools and colleges should include planning for effective transitions as part of their Individual Learning Plans or other record-keeping approaches, as this is key to the future success of young people with SEND. You can find out more about how your child’s school or college deals with transition planning by contacting them.

Whether your young person has an EHC Plan or is supported by their school or college, the aim should be the same: support should help a child’s development so that they achieve the best possible educational and other outcomes in adulthood.

If you or your young person feel that they are struggling or their needs are not being met by the school or college’s SEN Support programme, you might want to consider requesting an EHC Needs Assessment, which might result in your young person being given an EHC Plan. This brings together all the support a child or young person is legally entitled to in a single plan, which can last up until a young person is 25 years of age. The plan sets measurable outcomes. Some will be short-term, while others will look more to the future.

Getting an EHC Plan can be very helpful, as it may enable your child to receive support with their education up to the age of 25 if they need it. You can read more about EHC Needs Assessments in our Education chapter.

Transition planning: what to expect

The Children and Families Act 2014 states that the local authority must set out how they will provide the support children and young people will need to prepare for adult life across education, health, social care and other relevant services, such as housing and employment support.

You can find out more about what to expect in the SEND Code of Practice 2015. This is a statutory document about how children and young people with SEND should be supported and what organisations such as local authorities, schools, early years providers and NHS trusts must comply with (unless there are exceptional reasons not to). To view the SEND Code of Practice, visit www.gov.uk/government/publications/send-code-of-practice-0-to-25.

Preparing for transition planning

General planning

You will get much more out of transition planning if you understand some of the options that may be available to your child, so it pays to spend some time finding out what’s on offer.

The focus is very much on the child, so their views and aspirations should be at the centre of transition planning. It is therefore important that you prepare your child so they can contribute as much as possible. If you can, you should talk to your child about what they would like to do post-16, and look at their options further ahead into adulthood.

If your child has communication or learning difficulties, it is still important to take their views into account. You will find plenty of suggestions to help you get a clearer idea of their hopes and preferences in the next chapter, Involving your child. For example, if your child has a social worker, local advocacy services may be able to support them to communicate their ideas to professionals.

You might also want to talk to other parents or school staff. If your child is at a mainstream school, the school’s Special Educational Needs Coordinator (SENCO) can give you a range of information.

School staff should be able to tell you about school leaver programmes and alternative Key Stage 4 (Year 10 and 11) provision for young people with special educational needs. Schools may have strong links with local further education providers and may provide pupils at Key Stage 4 with work experience programmes that run alongside GCSEs, or are an alternative to them. The school will usually provide careers advice and guidance for students from Year 9 onwards.

Questions to ask yourself

These are some of the questions you might want to ask yourself in preparation for transition planning. You may want to make a note of the relevant ones so you can take them to the annual review meeting.

▶    Does your child have any thoughts or ideas about what they will do when they leave school? What would you like them to do?

▶    Has your child got a school record of achievement or equivalent? Looking over this may help you to think about their strengths and future direction

▶    What have other children from the school gone on to do?

▶    What types of social activity does your child enjoy?

▶    What courses are offered by local colleges and how could your young person be included in their local community?

▶    Are there courses offered by colleges further from home that may be more appropriate for your young person?

▶    If you’re thinking about a residential college, how could it be funded?

▶    If your child would prefer to be working, can you find out about apprenticeships, training and employment schemes that can offer support?

▶    Will your child live at home or move to independent or supported living when they leave school?

▶    If your child stays at home, will you need a break and, if so, how often? How can this be organised and funded?

▶    What daytime activities are available locally? Would this type of provision suit your child?

▶    Does your child have health needs? How will health care provision like speech and language therapy, occupational therapy or physiotherapy be arranged?

▶    Does your child need specialist equipment? If so, who will provide and maintain it?

▶    What about transport? How will your child get to their college course or apprenticeship and social activities? Will they need support to do so?

▶    Is your young person eligible for a 16-19 bursary to help with costs like transport, food and equipment?

▶    What about benefits? Are you and your child getting all the benefits you’re entitled to?

▶    Do you know how benefits are affected by college or part-time work? Do you know how your entitlement to benefits will change if your child claims benefits as an adult?

First steps: the Year 9 annual review

Parent-carers whose child has an Education, Health and Care Plan (EHC Plan) will already be familiar with the annual review process at school. However, the Year 9 annual review is slightly different.

The review will cover the same things as before – your child’s EHC Plan will be looked at as usual, the same issues will be considered and the same timescales apply. But the meeting will also focus on transition planning – the beginning of preparations for adulthood – so it will cover a far broader range of subjects than you’ll be used to. This may sound overwhelming, but it is just the first step in a process that will take several years.

For the Year 9 annual review, you and your child will be asked to think about their future and, with the input of the professionals involved with your child, a plan of action will be put together.

If your child has an EHC Plan, the transition planning will be written into the plan, so it should be updated at each review, clearly stating the actions that need to be taken, the responsibilities of everyone involved and timescales for all the actions.

Young people are now expected to stay in some form of education or training until they are 18. This is called Raising the Participation Age (RPA). This means that it is no longer an option to leave school at 16 and get a full-time job, unless training is also undertaken. So looking at how your child will continue their post-16 education will be a key part of transition planning.

In addition to further education, vocational training and employment, the transition process should cover your child’s health, leisure activities and where he or she may live as an adult.

In West Sussex, advice and guidance is delivered through the school setting and, when your child reaches their year of transfer (Year 11 upwards), a senior planning coordinator from the local authority will also be involved. Young people can also access careers advice from the Careers Team at West Sussex County Council. For more information, go to www.westsussex.gov.uk/education-children-and-families/your-space/work/careers-guidance.

You can also get advice from West Sussex SENDIAS. It has young people advisers who can support young people up to the age of 25 and help them to think through their options. For more details, contact their helpline on 0330 222 8555, or email send.ias@westsussex.gov.uk (parent-carers) or cyp.sendias@westsussex.gov.uk (children and young people).

You and your child at the centre of planning

The government says disabled young people should have ‘person-centred’ transition plans that clearly state the support they’ll need once they leave school.

A person-centred approach encourages participation from the young person, parents and everyone attending the transition planning meeting. It also means that information should be brought to the meeting in a way your child can understand – this may include photographs, symbols or pictures, for example.

Everyone involved in supporting you and your child to prepare for the future should take a person-centred approach to annual reviews. Meetings should be interactive and less formal than traditional annual review meetings to ensure that you and your child are central to the whole process.

What are the aims of a person-centred approach?

▶    To identify and discuss your child’s strengths – what they’re good at, what people like and admire about them – because whatever they do in the future should build on their strengths

▶    To identify what is important to your child (now and in the future) and the help and support they need

▶    To identify what needs to happen to keep your child as healthy and safe as possible

▶    To identify and discuss what is going well and what isn’t going well from the young person’s and their parents’ perspectives, as well as from the perspectives of school staff and others attending the meeting

▶    To agree actions that support your child to get what is important to them now and in the future, continue what is going well and change what isn’t, and try to resolve any ongoing issues

Tips to help you prepare

▶    Check if your child’s school is familiar with a person-centred approach to transition review meetings. If they’re not and you’d like them to use this approach, ask the school in advance. If you need help with this, contact West Sussex SENDIAS for details

▶    Some schools are doing preparation with young people before their Year 9 transition review meeting. Ask if this is happening at your child’s school

▶    Discuss the topics with your child well in advance of the meeting, so you can help them to prepare and know what they might want to happen next

▶    Think about the aims of the person-centred transition review before the meeting, so both you and your child come prepared

▶    It can be helpful to write down the things you want to talk about beforehand, so that you and your child have a checklist of points to cover during the meeting

What to expect

These are some of the things you should expect in a transition review.

▶    The head teacher or another member of staff, usually the Special Educational Needs Coordinator (SENCO), is responsible for ensuring that the Year 9 annual review is organised as a transition planning meeting. They will send out invitations, sort out times and dates and gather any relevant reports or advice

▶    They must invite the parents, the young person, your senior planning coordinator from the local authority, a representative from social care (social worker) and anyone else the head teacher or the local authority suggests

▶    Most people invited to the Year 9 annual review don’t have to attend. They can opt to send written reports or advice to the review instead. But in practice they don’t have to do either. A social worker should come if your child is likely to need social care support after they leave school, or if they’re ‘looked after’ by the local authority

▶    To prepare for a Year 9 annual review, the local authority has a legal obligation to check with social care whether the child is disabled. Children and young people with EHC Plans are considered disabled and protected under new legislation. You might not have had contact with social care before, but some support services may be useful to your child as they become an adult, so this might be a good time to ask for a social care assessment for your child if you have not done this before

▶    The Year 9 annual review paperwork follows the Department for Education’s Preparing for Adulthood pathways. You can find out more about this at www.ndti.org.uk/resources/preparing-for-adulthood-all-tools-resources

▶    The school will write up your child’s annual review report. If he or she has an EHC Plan, the planning for adulthood may be taken into the plan, as it has a focus on future goals and outcomes

Key professionals involved in transition planning

Senior Planning Coordinator: in West Sussex, the senior planning coordinator should be invited to the Year 11 annual review, and the Year 12 and 13 reviews if your young person is leaving school or college.

The senior planning coordinator may attend subsequent reviews as appropriate. They may also stay involved when the young person leaves school to attend further education or training.

Social Care: if a young person is already known to children’s services, referrals are made to equivalent teams within adult services to see if they will provide support once the young person is over 18.

Young People Advisors: young people can get information about colleges and courses that might be suitable for them from West Sussex SENDIAS’s young people advisers. If your child wants to do a particular college course after they are 16, they can also ask the YP adviser to look into whether their Year 10 and 11 subject options will give them the qualifications they need.

Tips for the Year 9 annual review

Before the meeting

▶    Remember that, along with planning for the future, your child’s EHC Plan will be reviewed and may be amended. Read through your child’s EHC Plan to see whether it needs amending. If it does, flag it up with the school and casework officer and ask them to get any assessments or advice that support the amendment before the annual review meeting

▶    If you need advice, contact West Sussex SENDIAS on their helpline or email them

▶    If your child hasn’t had an assessment from an Educational Psychologist (EP) in the past couple of years, it might be worth requesting one before the meeting to make sure all their special educational needs have been clearly identified. Make sure significant needs like speech and language therapy don’t slip out of the EHC Plan. Changes to the EHC Plan are decided by the local authority but you have the right to appeal them

▶    Identify who your child’s senior planning coordinator is and, if they’re currently supported by social care, ask who will support your child’s transition to adult social care. It pays to establish a relationship early on so you can ask for support if you need it later

▶    If you think there’s a professional involved with your child who should be invited to the meeting, make sure the head teacher or SENCO knows well in advance so there’s time to invite them

▶    For some of us, although we want our children to continue learning, it feels unrealistic to talk about career choices. Our focus is more on the need to arrange support for our child in the future, such as short breaks or supported living. If this is the case, make sure someone from social care has been invited to the meeting and will be attending

▶    In theory, reports about your child should be circulated to everyone who’s planning to attend at least two weeks in advance. In practice, this hardly ever happens, so it’s worth asking the school to chase the professionals involved or do so yourself

▶    You can take someone with you to support you too, such as a friend or family member, or you could ask for a representative from West Sussex SENDIAS to come with you. If your child will be coming to the meeting, is there someone they’d like to have there to support them, like a friend, advocate or mentor?

▶    Make sure you inform the school in advance if you intend to bring someone with you to support you or your child

▶    Meetings can feel difficult so you may find our fact sheet ‘Meetings and paperwork’ helpful. All our fact sheets are available to download free on our website at www.reachingfamilies.org.uk/factsheets

▶    West Sussex SENDIAS has also produced an information leaflet to help parent-carers with annual reviews. You can find a copy on the resources section of their website at www.westsussexsendias.org

At the meeting

▶    Be aware that people at the meeting may not have any previous knowledge of your child, so you may need to fill them in

▶    Ask what each of the services represented at the meeting can offer and what the planning process will be

▶    Be clear about your child’s strengths and the support they need

After the meeting

▶    Annual reviews for EHC Plans continue until the young person leaves school. Transition planning will be discussed at future annual reviews, and after each one the EHC Plan will be added to and changed as needed.

▶    The school must prepare a report on the annual review and send copies of this to the parents, the local authority, the head teacher, anyone else who attended or provided advice and/or reports for the review and anyone else the local authority feels is appropriate.

▶    If you disagree with the content of an EHC Plan, you have the right to appeal to the first tier tribunal (Special Educational Needs and Disability).

▶    It’s also important to note that an appeal going to tribunal must always have an educational component. If your appeal relates only to health or social care, you should use disagreement resolution and/or mediation and then the relevant complaints procedures if necessary.

▶    If you need help with an appeal, contact West Sussex SENDIAS. You can also ask for advice from IPSEA. Some national charities for specific disabilities and conditions also offer advice and support on these issues.

Constantly evolving

What’s agreed in the Year 9 annual review is the beginning of a long journey, and decisions are not cast in stone. While some young people know what they want to do after school, for others it will be a matter of waiting to see how they get on. It’s not always possible to decide early on and new options may present themselves further down the line.

Some of us have also been surprised by how much our children have flourished and grown over the years and have been able to consider a much wider range of opportunities than we would have thought possible when they were younger.

Some young people with more complex needs will keep an EHC Plan up to 25. The senior planning coordinator will help to ensure that the EHC Plan is updated and relevant to the support they need at college. This should include active input from you and your child.

Information resources

There are a range of organisations offering information, advice and support on transitioning to adulthood. Locally, as well as SENDIAS, you can also check the Reaching Families website, as we offer regular training workshops for parent-carers on a variety of topics. For further information, visit www.reachingfamilies.org.uk/training.

Nationally, many organisations offer information and advice on preparing for adulthood. Further contact details for the organisations listed below can be found in our National Directory.

▶    Cerebra has fact sheets and a parent guide to transition. Go to the ‘help and advice’ section of their website for more information. For further information, visit www.cerebra.org.uk/get-advice-support/parent-guides

▶    Contact has resources to help families during transition. Go to their website and choose ‘help for families’, then click on ‘information and advice’ and select ‘preparing for adult life’. For further information, visit www.contact.org.uk

▶   The Council for Disabled Children has created the Transition Information Network, providing online resources, publications and events. It also publishes a free magazine called My Future Choices. For further information, visit https://councilfordisabledchildren.org.uk/transition-information-network. You can also access their resource hub, which has fact sheets, toolkits and information about case law and legislation updates

▶    Dimensions works with people with autism, challenging behaviour, complex needs and learning disabilities. The website has resources for families and young people, including a transition guide and other easy-to-read guides. For further information, visit: www.dimensions-uk.org/what-we-do/transition

▶    The Down’s Syndrome Association has a dedicated section about transition on their website. Go to ‘Life’s journey’, then click on ‘children, families and education’ and scroll down to ‘transition and independence’, which includes an easy-read section, Listen to Me. For further information, visit www.downs-syndrome.org.uk

▶    The Foundation for People with Learning Disabilities has a guide entitled Thinking Ahead to help families to plan for transition. For further information, visit www.learningdisabilities.org.uk

▶    IPSEA has advice and model letters on SEND law and education. Go to ‘get support’ and click on their section for young people aged 16-25. There is also specific advice on transport to school or college for over-16s. For further information, visit www.ipsea.org.uk

▶    Mencap has a section on transition to adulthood on their website. For further information, visit www.mencap.org.uk

▶    The National Autistic Society has a section on transition on their website. For further information, visit www.autism.org.uk

▶    National Development Team for Inclusion (NDTi) has Preparing for Adulthood resources. Although initially designed to support local authorities, families may also find them useful. For further information, visit www.ndti.org.uk/resources/preparing-for-adulthood-all-tools-resources

▶    NHS website has a section on transition to adult health and care services, with useful information and links. Go to www.nhs.uk/conditions/social-care-and-support/transition-planning-disabled-young-people

▶    Scope has a section on its website on transition. For further information, visit www.scope.org.uk/advice-and-support/planning-transition-to-adult-care-services

Together for Short Lives works with families of children and young people with life-shortening and life-threatening conditions. It has a transition to adult services hub, which can be accessed at www.togetherforshortlives.org.uk/changing-lives/developing-services/transition-adult-services.

Section three: Teens and adulthood

Involving your child

Parent-carers are used to making decisions on behalf of their child to try to ensure that their needs are met. Over the years, you will have had to make many important choices for your child and will probably have felt comfortable doing so. This may have involved fighting hard to secure the additional support or specialist services that your child needs.

It is a huge responsibility and, even though your child is now moving into adulthood, the pressure to do the right thing by them remains. For some parent-carers, therefore, the idea of involving their young person in decision-making may feel quite daunting.

However, all young people know what they like and don’t like, and many have their own strong opinions about their future. It can be hard to put aside our own hopes and expectations for them, but it’s important to remember that plans that take their wishes and feelings into account are more likely to work.

Although there may be a variation in our children’s ability to make decisions, the information in this chapter is relevant to all families, including parents. Most young people can show both positive and negative preferences to a person, a place or an activity and this ability can be invaluable when making decisions.

Some young people may use sign language, visual symbols or other augmented forms of communication, but for simplicity, the terms ‘she tells us’ or ‘he says’ will be used to cover all methods of communication. In our experience, a young person’s views are likely to be given greater weight if they communicate directly with those involved in the decision-making process, but they may need your help to do so.

Choices for our children

Every parent wants their child to make good decisions that lead to them being happy and fulfilled. One of the things that concerns many parent-carers about encouraging young people to have a say is that we want to make sure they understand their options and what the outcomes of each choice may be.

However, the views of children and young people can be overlooked. This is especially true for disabled children who, after years of decisions being made for them, may feel that they don’t have a voice or that their opinions are not as important as those of other people.

The balance between involving your child and fulfilling your role as a parent and protecting their best interests can seem a difficult one. But at 16, they’ll legally have the right to make their own decisions according to their ‘mental capacity’, and at 18 they are legally adults. It’s part of our job as parents to help them prepare for this.

Worries about their vulnerability as adults can stop us encouraging young people to get used to making some choices and decisions, but we will make them less vulnerable if we teach them that they have a right to be listened to and that their views should be taken seriously.

What the law says

It is a good idea to familiarise yourself with the laws protecting your child’s rights around decision-making. These are The Mental Capacity Act 2005, The Equality Act 2010, The Human Rights Act 1998 and The United Nations Convention on the Rights of Persons with Disabilities 2008.

The Mental Capacity Act 2005

Once a young person reaches 16, the law says they have the right to make decisions for themselves wherever possible. The Mental Capacity Act 2005 covers a person’s ‘mental capacity’ – in other words, their ability to make decisions for themselves – and what to do if it is established that a person does not have mental capacity.

The act aims to protect and empower people who may not be able to make their own decisions. It also helps parents or carers understand how and when they can act on behalf of someone who may not be able to make decisions for themselves. It outlines how to decide if someone has capacity to make a decision, explains how decisions should be made for them and who should be involved in this.

The Mental Capacity Act covers major decisions including property and financial affairs, health care and treatment, where a person lives and decisions about everyday life such as personal care. Some activities or decisions need more capacity than others, but very few people are unable to make any decisions, even those with severe or profound and multiple learning disabilities and high support needs.

If someone doesn’t have the mental capacity to make a particular decision for themselves, the Mental Capacity Act makes it clear who can act on their behalf and how they should go about it. For example, you might become their appointee to look after their welfare benefits, but a health care professional might be the decision-maker for them over a health issue.

The law also states that all possible steps must be taken to help people make decisions about their lives. It explains how capacity should be assessed to decide whether a person is able to make a particular decision at a particular time and provides a Code of Practice for someone acting on their behalf. Decisions made for the person must be in their best interests and should place the fewest restrictions on their basic rights and freedoms.

Visit www.legislation.gov.uk/ukpga/2005/9/contents to find out more about the Mental Capacity Act. To look at the Code of Practice, go to www.gov.uk/government/publications/mental-capacity-act-code-of-practice.

Several other organisations can also help. Hft has produced a guide for carers called Using the Mental Capacity Act, which is available at www.hft.org.uk, or you can call 0117 906 1700 and ask for a copy to be sent to you. Mencap has a resource pack aimed at parents of young people with more severe learning disabilities, which you can download free from www.mencap.org.uk or call 0808 808 1111 and ask for a copy. The Foundation for People with Learning Disabilities’ guide Thinking Ahead also covers the Mental Capacity Act.

As of 1st July 2025, advocacy is also available to adults and young people in West Sussex via Advocacy People. For further information visit: www.advocacypeople.org.uk.

The Equality Act 2010 and Human Rights Act 1998

These two acts support our children’s rights to respect, choice and independence in their adult lives. The Equality Act 2010 aims to prevent discrimination on the grounds of age, disability, gender, race, religion, sexual orientation or transgender status. It replaces the Disability Discrimination Act 1995 and covers employment, education, public and private services, transport and more.

The Human Rights Act 1998 brought the European Convention on Human Rights into UK law. Its key principles include the right to liberty, a family life and freedom of expression. To find out more, visit the Equality and Human Rights Commission (EHRC) website at www.equalityhumanrights.com.

The Equality Advisory Support Service (EASS) also has an advice and guidance section on their website at www.equalityadvisoryservice.com. You can also call their helpline on 0808 800 0082.

Helping your child to make choices

Most of our young people will be asked to make decisions about what they want to do and the sort of help they need as they move into adulthood. Some of our young people will be able to make these decisions for themselves, while others may need support, especially for decisions with far-reaching consequences.

Involving children in decision-making is much easier if they are already used to making choices and know that their views matter.

You may find that you have to remind others dealing with your child that their views count. Whenever other people are communicating with your child, make sure they are given the chance to express their own opinions and preferences and that these are taken seriously by the other person. If your child knows that their views are valued and important in everyday life, this will build their confidence and help them to make their voice heard in important meetings.

Building decision-making skills

You can build your child’s confidence to help them make big decisions by giving them plenty of practice making smaller, everyday ones. As a parent, you can create opportunities for your child to practise ‘having a say’.

It can be useful to break things down into smaller steps. For instance, to help your young person to choose from a long menu it might be more manageable if certain items are ruled out, so you might say, “You’re not keen on pasta.” Choices about clothes to buy can be made easier if you give extra information: “Laces are tricky.” If your young person is choosing what to wear, you can help with, “It will be very cold today.”

Similarly, when it comes to transition, the first step towards deciding which further education course to choose might be, “What full-time courses are running?” If the choices still seem confusing to your young person, you can help them by narrowing the options further.

If you do limit options, be careful not to do so for your own convenience, or present them so the young person chooses what is going to please you or others rather than themselves.

Talking about the practical things children need – like someone to keep an eye on them, or a gluten-free diet because of their allergies – can be a helpful way to practise the decision-making process because it shows them the thinking behind making choices. This is a useful skill to learn for negotiating in more formal review meetings.

Tips for building decision-making skills

▶    Break each choice down into small, manageable steps

▶    Check the choice has been understood

▶    Group different options together by an important common factor – so, for example, if you’re planning a day out, you might group several food options together or group together options for getting there

▶    Remember to congratulate the young person on successful decision-making. Saying, “That’s a good choice!” conveys your pride in their ability to choose

Putting young people in the picture

It can be hard for young people to imagine what it might be like to do something they haven’t tried before, whether it’s something small like a new food, or something big like a work placement. Pictures and photographs can help them. For instance, looking through magazines could help them decide what haircut might suit them or what colour scheme they’d prefer for their room. But the best experience, of course, is the real thing.

Dealing with anxieties

▶    Unpicking worries can take time, especially if it’s something that doesn’t make much sense to us. It’s important to take all worries seriously; they arouse strong feelings and can get in the way of trying new things or making choices

▶    Consider the potential risks and build in safeguards. In this way the young person can take another step towards independence

Under pressure

Young people rarely make decisions they are happy with if they feel rushed, under pressure or unable to give their whole attention. Sometimes they’re too interested in the TV, bored, tired or feeling unwell. Some places aren’t good either – perhaps the shop’s too crowded, the sales staff too persistent or the music too loud. If it’s hard to hear yourself think, a young person may choose anything just so they can move on.

Choices as a family

Making decisions as a family can help a young person learn about fairness, considering the views and feelings of others and living with majority decisions. Finding out that it’s fair for everyone to have a chance to say what they think, that it’s okay to have different ideas and to change your mind as a result of hearing what others think is useful learning. It’s also helpful to learn that you don’t always get your choice and may have to compromise. These realities can be hard to accept, but it makes more sense to young people if pros and cons are discussed openly.

Tips for talking it through

▶    Negotiate a good time and place to think about important things

▶    Remember, wanting more time to think about things is a decision as well

▶    Make sure you do plenty of ‘thinking out loud’ to show how you make decisions and solve problems

▶    Remember, the consequences of a choice can be better understood by talking it through carefully – it’s important that your child understands that having the right to choose also comes with responsibilities

Getting outside help

Many children choose to talk over serious decisions with their parents or other adults they are close to, but sometimes they may prefer to talk with someone who is outside their circle of family and friends. In some cases, they may also prefer it if this person is the one to support them in meetings.

The Advocacy Service can help disabled young people be heard. Advocates can go to meetings with a young person, help them to make a complaint or get legal advice. For further information, visit www.westsussex.gov.uk/education-children-and-families/your-space/life/advocacy.

For young people with mental health challenges, MIND in Brighton and Hove have advocacy workers who can provide support to young people living in West Sussex. For further information, visit www.mindcharity.co.uk/services/services-in-west-sussex/advocacy.

Involving young people in transition planning

It is worth taking the time to prepare for review meetings. Your young person may find it helpful to look at some of the resources that we linked to in the previous chapter. However, it’s worth remembering that your child may need a period of time to look at the information and think things through, so make sure you plan sufficient time for this rather than leaving it until the week of their review.

Your child may be the star of the show at a person-centred transition review, but if they have a more traditional review, they may not be invited to all of it. Even if they won’t be there, though, you can still find out their views and put across how they feel at the meeting. We assume below that they will be present – but you’ll find that many of the points are still relevant if they’re not there for the whole meeting and you’re expressing their views for them.

Helping your child to plan for a meeting doesn’t have to happen formally. Sometimes it’s more productive to do five or ten minutes’ thinking a day over several weeks, rather than attempting longer sessions.

If it’s possible, avoid closed questions such as, “Do you like that?” as they invite only a yes or no answer. Asking open questions like, “What do you like about that?” will allow your child to give a fuller response.

Repeat back what you think your child is telling you, to check that you’ve understood them. Avoid assuming what’s important to them. If it’s not easy to be sure what they mean, acknowledge you’ve got lost and start again rather than trying to keep going when you’ve lost the thread.

Of course, talking and writing are not the only means of communication. If a child can’t speak, we should not assume that they don’t have views or preferences. Encourage your child to choose how they want to record their views. Think about using photographs, drawings, audio or DVDs as well as observation to catch and record their wishes and feelings. Simple questions in words, signs, symbols or pictures can help many young people make sense of things and make their contribution.

Tips to help you prepare

▶    Check your child knows what the meeting is about, who will be there and what sort of things they may say. If you aren’t sure yourself, you’ll need to find out

▶    Make time to talk with your child about any changes in their circumstances, their needs or your needs

▶    Take a fresh look at their EHC Plan as there may be things that need updating

▶    It is easy to build value judgements into questions by asking your child, “Why?” Try instead to say things like, “Tell me more about that.” Ask more open questions and repeat their answers to check you’ve understood the point they are making

▶    As the meeting gets closer, make sure copies of your child’s views, whatever the format, are circulated to everyone attending the meeting, along with your advice and that of others

▶    Find out if your child wants to attend all or part of the meeting, or if they would like another person to present their views, who they’d like that to be. Would they like to invite a friend or an advocate?

Setting ground rules for the meeting

Meetings are more successful when there are clear arrangements in place that take account of a young person’s needs. Check with the school what the ground rules are and be prepared to make your own suggestions and ask for changes if you think certain things won’t work.

Ground rules before the meeting could include:

▶    A meeting place that’s accessible and familiar

▶    A meeting time when the young person is best able to contribute

▶    Clarity over whether your child will be there for some or all of the meeting and, if they’re only there for a part of it, which part it is

▶    The opportunity for your child to choose where they sit

▶    If your child usually needs someone to interpret for them, clarify with them and the school who that will be before the meeting – it’s confusing if everyone tries to help

▶    Agreeing what will happen if the young person wants to leave the meeting or take a break

▶    Getting the meeting recorded or minutes taken on your child’s behalf if that’s what they want

▶    Checking if there’s anyone the young person wants to be present for only part of the meeting

Ground rules at the meeting could include:

▶    Introducing your child to anyone they don’t know at the meeting and explaining why they’re there

▶    A reminder that it’s your child’s meeting and what’s discussed should be central to their future

▶    Agreeing not to challenge what he or she says, interrupt them or finish their sentences for them

▶    Checking your child feels their questions have been answered and, if not, giving them the opportunity to ask again

▶    Recapping what each person has agreed to do after the meeting

▶    Checking your child understands what has been agreed and what will happen next

After the meeting

▶    Check out how your child feels. Maybe they want to go over what happened. Perhaps there is something they would like done differently next time

▶    Make sure your child gets a copy of what was agreed in a format that is accessible to them

▶    Suggest your child keeps their notes, along with the minutes and recommendations, in case they want to look at them again

▶    If your child has clear views about important matters, make sure they’re reflected in amendments to their EHC Plan

▶    If it hasn’t been possible to act on your child’s wishes, find out who will explain the reasons for the decision

▶    Encourage your child to be involved in putting recommendations into practice

What if things go wrong?

However much groundwork you have both done, however well-reasoned the young person’s arguments, and however well supported your child has been, it’s possible your child might not get what they want.

However, decisions with long-term implications can and will be reviewed, and many decisions can be challenged. If you’re unhappy with the decisions that have been made, this might be the time to get some professional advice from local or national organisations.

Section three: Teens and adulthood

Growing up and relationships

Part of growing up is about developing good self-esteem, a positive body image and the confidence to be happy with who you are as a person, as well as developing a sense of responsibility for your own actions.

Building self-esteem

Building self-esteem so that your young person feels happy and confident is extremely important for all children, and especially so for those with SEND. You can help them in the following ways.

▶    Celebrate their successes, no matter how small. Make sure your young person knows how proud you are of everything they do

▶    Make sure you compliment them every day – this could be something as simple as telling them they’ve made a good choice

▶    Remind them of all the things they are good at and, if things do go wrong, reassure them that everyone makes mistakes occasionally

▶    Feeling that their opinions are valuable and respected will help your young person to speak up, which will help when they have meetings with professionals

▶    Encourage your young person to make their own decisions. You can help them to do so, but remember to respect their choices if they are not what you were hoping for!

▶    Encourage your young person to be assertive with others. Teach them how to deal with people who ask them questions about their disability that they may not want to answer. For example, tell them that it is okay to change the subject if they do not feel comfortable

▶    Remind your child of the fact that everyone is different and that this is OK. It can be really helpful to find positive role models for your child. Look out for news articles and photos that you can share with them

▶    Encourage your child to keep clean, use deodorant, wash their hair regularly etc.

▶    Like all teens, your young person may want to experiment with their clothes, hair and make-up. Help them to try out different looks and encourage them to find their own style

▶    If your child is self-conscious about certain aspects of their appearance, don’t dismiss their concerns. Listen to them and support them by helping them to talk through their feelings. It’s important to tell them that everyone has things they do and don’t like about themselves. If you can get them to talk about their good points and focus on some positive aspects, this can help them to feel more confident about their appearance

Puberty and sex education

Growing up is also about having relationships and becoming a confident adult who may have a range of close friendships and sexual partners.

Some parents may find talking to their children about puberty and sex awkward. However, for all children and young people, regardless of whether or not they have a disability, being open and honest from an early age is important. Puberty and the swirl of confusing adolescent emotions that go with it is far easier to cope with if a young person knows what is happening to their body and what changes to expect.

What does my child need to know?

It’s a good idea to start talking to your child about how their body works and grows from an early age, and to gradually build on their knowledge as they get older. If they ask questions, be honest and factual, but don’t feel like you need to go into too much detail, which can be overwhelming. Building a child’s knowledge slowly and at their pace will be far less scary than having to sit down and have the ‘big talk’ about sex.

You may also find it helpful to contact the FPA (formerly the Family Planning Association), which produces resources to help parents overcome difficulties in talking about boundaries, puberty and sexual issues with their children. Their website also has advice and easy-read resources for young people with learning disabilities. For further information, visit www.fpa.org.uk.

What words should you use?

Use words your child is familiar with and gradually introduce the correct medical names for the genitals and other body parts. Even if your child chooses to use their own words, it’s helpful if they can understand and use the correct medical terms in certain situations.

This is especially important if your child is going to be in hospital on their own. They may be embarrassed if they can’t explain a problem to a doctor or nurse because they don’t know the correct words. If your child needs personal or intimate care, consistency in the language used to describe the genitals and other areas of the body is also very important.

If your child relies on the help of support workers when going to the toilet, or they are used to undressing regularly for doctors or therapists, the concept of parts of the body being ‘private’ may also need reinforcing.

Puberty

Young people with special needs go through puberty like any other child. Although puberty may be early for some and delayed for others, it is a biological and emotional process that has to happen. As far as possible, all children and young people need to be prepared for the changes that will happen to their bodies before they take place. Every young person is different, but here are a few ideas you might want to consider talking about.

▶    The names and functions of the sex organs

▶    What changes to expect at puberty

▶    How society expects people to behave in public

▶    Keeping safe from exploitation and abuse

▶    Relationships and responsibility

▶    Preventing unplanned pregnancy and Sexually Transmitted Infections (STIs)

Schools cover puberty, sex and relationships in science lessons and as part of PSHE (Personal, Social and Health Education). You may want to talk to a teacher at school about your child’s sex education programme, especially if you feel they might be anxious or they might benefit from a chat at home beforehand.

Your child may need some points to be talked through further at home afterwards. They might have worries relating to their medical condition or disability. If possible, you need to be able to allay their fears. If you don’t have the answers, you could contact local or national organisations that support disabled children. If there is a specific organisation for your child’s condition, they may have information that’s more tailored to your child.

Periods

Girls can have periods from around the age of nine, although it’s also normal if periods do not start until a girl is in her teens.

Make sure you have covered menstruation well before the first period, so that your daughter knows it is a normal process and nothing to be worried about. Explain that her period will stop after a few days and that it will happen again. Once her periods have started, it’s a good idea to mark the date in a diary or on an online app so that she knows roughly when it will happen again.

You should also give her information about pads and tampons so she knows what they are for and how they are used. It’s a good idea to buy some and take them out of the wrapping. Usually, pads are quite easy for a girl to put in place herself, but sometimes she may need help because of her special needs or disability. Period pants are another alternative. Although they are expensive initially, they are washable and your young person may prefer them to tampons or towels, particularly if they have sensory issues. Washable pads are another option, along with menstrual cups, which come in a range of brands and sizes.

Emphasise the importance of personal hygiene and cleanliness during menstruation. Make sure your daughter knows that periods are private and she should not talk about them with everyone, but that it is OK to talk to you, a teacher at school, a nurse or a friend if she wants to or has any questions.

Personal care

Children and young people who need intimate personal care may find it awkward or embarrassing as they get older and go through puberty. It’s important to ensure that you and/or any carers who provide personal care are respectful and sensitive towards your young person. You can do this by:

▶    Giving your young person a say in their personal care plan

▶    Making sure the care plan is assessed and updated as and when your child’s needs change

▶    Finding out if there are ways that your young person could manage their intimate care needs themselves, using aids or equipment

▶    Ensuring that the number of people who provide intimate care to your young person is kept to a minimum

▶    Asking your young person before you provide intimate care and ensuring that they know why it is needed

▶    Keeping things consistent – ensure that anyone who provides intimate care to your young person uses the same language for parts of the body and functions

Masturbation

Exploring your body and getting to know what feels good is natural as you grow up, but for young people with disabilities, there may be issues with opportunities and privacy. As for any adolescent, your young person’s right to privacy should be respected. Try to knock and wait before going into a bedroom or bathroom, and ensure that other carers, including support workers, do so too.

Some young people with learning disabilities may need extra support to understand that while masturbation is okay in private, there are times and places where it is not acceptable. As mentioned in ‘Useful resources’ (see below), there are a number of leaflets and books available, including some easy-read books that will help you discuss things with your young person in a way that is appropriate for them.

Sexual relationships

In the past, it was commonly believed that young people with disabilities did not have sexual feelings or needs and that if their disabilities were complex, they did not have the capability to have sex. They do, and part of helping your young person on their journey to adulthood is to acknowledge this so that you can give them the knowledge they need to form safe, loving relationships.

Many parents worry that teaching their young person about sex will encourage them to become sexually active at an earlier age. However, children who have received sound sex education are more likely to wait and become sexually active later than their peers. Avoiding talking about sex will not make your child’s sexual development, feelings or desires go away, but it may leave him or her feeling confused and fearful, especially if they misunderstand what they’ve learned or hear wrong information from peers.

With so many teenagers today having easy access to the internet, it is far better that your child learns about sex in a safe, secure way by talking to you, than by having someone at school show them inappropriate images or videos. It is great if your young person feels they can talk about their feelings and needs with you. Not only will this give them the support they need to deal with difficult adolescent feelings, it will also give them the security to discuss any anxieties they may have about anything that makes them feel uncomfortable.

As a parent, you will play a vital role in supporting your young person through adolescence so they can become confident, knowledgeable adults who can make informed choices. Being open and honest when you talk about sex is really important, as is ensuring that your young person has access to good sex education and health care.

Locally, your young person can get information, advice and support on sexual health, relationships and related issues from their GP. They can also use West Sussex Sexual Health Services, who have information on a huge range of topics such as contraception, health screening and pregnancy, as well as information on sexual health clinics across the county. For further information, visit www.sexualhealthwestsussex.nhs.uk.

When and how to talk about sexual relationships

▶    Talk to your child from an early age, certainly before puberty

▶    Chatting casually and openly while you do other things will also help children to feel that sex is normal. You may find that a TV programme or book triggers a conversation, for example

▶    Answer questions and don’t be afraid to say, “I don’t know. Let’s look it up together”

▶    Answer the question they’ve asked. If they want to know more, tell them, but don’t overcomplicate the issue or sit them down for a ‘big talk’ as it can be overwhelming to try to absorb all the information at once

▶    Talk to your child about mutual love and respect

▶    Make sure they are aware of all the different types of relationship and the fact that same-sex relationships are as common for disabled people as non-disabled people

▶    Share your own beliefs and attitudes but be prepared to listen to your child too. They may have different views on things

Protecting your child from abuse

There are a number of reasons why disabled children and young people can be more vulnerable to abuse. Their learning disabilities may mean they have less understanding about private parts of the body, particularly if they rely on intimate care or have frequent medical examinations where they need to undress. Or they may have communication difficulties that affect their ability to speak out about abuse. So the need for sex education and an understanding of appropriate touch is essential.

Try to make sure your child understands the difference between wanting to be touched and kissed and being made to do something that makes them feel scared or uncomfortable.

Teach them that their body belongs to them and that it is not okay for someone to touch them if they do not want them to. Be sure that your child knows they can talk to you or someone else they trust about anything, no matter how awful or embarrassing it feels. If your child uses signs or symbols, be sure to introduce ones that allow them to communicate with you or others about their body and feelings.

However, it is important to keep these risks in perspective. Give your child the confidence, knowledge and skills to protect themselves, without over-protecting them or stopping them from experiencing all the good things that life has to offer.

Useful resources

There are a number of good resources to help you explain changes during puberty to a child with learning disabilities. Talking Together about Growing Up by Lorna Scott and Lesley Kerr-Edwards is available from the Family Planning Association – for further information, visit www.fpa.org.uk. Let’s Talk about Sex by Robie Harris and Michael Emberley (Walker Books) covers all aspects of growing up.

Contact’s ‘Growing up, sex and relationships’ booklet also goes into more detail about puberty, relationships and other issues around growing up. It also has a variety of useful links to other organisations that may be able to help you. For further information, visit www.contact.org.uk.

There are also a number of books written for children and young people with additional needs that explain this subject. Jessica Kingsley Publishers produces numerous titles relating to disabilities and special educational needs, including a series of easy-read picture books. They cover a vast range of topics including puberty, gender identity, masturbation and sex, as well as using public toilets safely. For further information, visit www.jkp.com.

Books Beyond Words produces easy-read booklets for people with learning disabilities, to help them to understand relationships and health issues. For further information, visit www.booksbeyondwords.co.uk.

Sexuality

If your young person is confused about their sexuality, you can get advice and support from the Switchboard Helpline on 0800 0119 100, or go to www.switchboard.lgbt. You can also contact Stonewall at www.stonewall.org.uk and Regard, an organisation for LGBTQ people with disabilities, at www.regard.org.uk. Locally, your young person can also access support from Allsorts Youth Project at www.allsortsyouth.org.uk.

Gender identity and gender dysphoria

It is quite common for children and young people to question their gender identity, especially if they feel that they don’t fit into society’s traditional masculine and feminine stereotypes. Some young people may feel they are transgender, non-binary or gender-queer, for example, while others reject gender altogether and describe themselves as agender, or feel that their gender changes, which is known as being gender-fluid.

Locally, Allsorts offers support and clubs for LGBTQ children and young people. Nationally, Switchboard (see above), The Mix (www.themix.org.uk) and Regard (see above) can also offer advice and support. Further resources can be found at https://gic.nhs.uk/info-support/support-groups-and-resources.

Online safety

Computers, tablets and smartphones are such a central part of everyday life that it is inevitable our children will want to go online. It’s a constant source of worry to all parents – how do we balance freedom to use the internet with keeping our children safe from its darker side?

Fortunately, there are plenty of resources to guide us through the online maze and help us ensure that our children and young people can explore safely. For general advice about online safety, the following sites are useful.

Cerebra has a guide on internet safety for parents of children with learning disabilities and autism at https://cerebra.org.uk/download/learning-disabilities-autism-and-internet-safety.

Childnet has resources for parents, including guidance for keeping children with SEND safe online, at www.childnet.com/parents-and-carers.

Family Lives has advice on keeping teens safe online, including resources on chat rooms, gaming and sexting, at: www.familylives.org.uk/advice/teenagers/online/online-safety.

The Foundation for People with Learning Disabilities has resources that are specifically tailored to young people with learning disabilities. For further information, visit www.learningdisabilities.org.uk/publications.

Get Safe Online is a website with tips and explanations about everything from social media to banking – go to www.getsafeonline.org.

The NSPCC also has advice about keeping children safe online, with guides to setting up parental controls. Go to: www.nspcc.org.uk/keeping-children-safe/online-safety.

Thinkuknow has information about how to keep your child/young person safe online. For further information, visit www.thinkuknow.co.uk/parents. You can also search the resource library, which has topics divided by age range with tailored content for children and young people with SEND.

Stonewall has produced a guide to staying safe online for LGBTQ young people – go to www.stonewall.org.uk/resources/staying-safe-online.

Section three: Teens and adulthood

A place to live

Sometimes it is difficult to imagine your child not living with you when they are older. You may be worried that no one else will be able to care for them or love them the way you do. Or they may want to leave home and you feel you’re ready for them to leave, but worry that there is no suitable support or provision for them.

This chapter covers what housing options are available for young disabled people in West Sussex. The experiences of parents and young people who have already made the move show that it’s important to think and start planning early for this major move.

Where do people live?

Housing for disabled people has come a long way since the 1960s, when people lived in institutions that kept them apart from the rest of society. Disabled people spent many years lobbying to have the right to live in the community like everyone else. This led to changes in attitudes and government policy that have enabled thousands of people to move out of long stay hospitals, campuses and residential care. But of course there’s still some way to go to ensure that everyone has free choice in their living arrangements and access to support that meets their needs.

Housing in West Sussex

In West Sussex, average house prices are high, which means affordable housing is hard to come by. There are several different types of accommodation option for people with a disability. They might choose to live with their family; in private or social rented housing; in owned accommodation; in residential care or specialist placements; or in a carer’s home in what’s called Shared Lives.

Planning for the future

Because disabled young people are likely to depend on formal and informal support, planning for the future is crucial. Generally speaking, disabled young people, their families and local authorities should take part in detailed planning and assessments before any change is made to living arrangements. This is to ensure that the new accommodation meets the needs of the young person. Planning is also a way of involving your young person in decisions about where they want to live and who they want to live with.

When looking for housing for your young person, it’s really important that the arrangement meets their needs. Every person has individual needs, which may range from step-free access or an extra room for a carer to being near informal support networks, such as their family and friends.

Eligibility criteria for support from adult social care and funding

Once your child is 16, the social care support they need is provided through adult social care. Adult social care workers carry out needs assessments to decide what the young person’s support needs are, whether they are eligible for support and, if they are, what support social care can offer you and your young person. In West Sussex, enquiries are initially directed through the Adults’ CarePoint (see our directories for details).

Each of the district/borough councils in West Sussex has its own housing options officer with whom you can discuss your young person’s situation. You will be offered advice on what you could do yourselves or assistance to move into suitable housing. This service is only available to people over 16.

How the council commissions (buys) services

West Sussex’s housing and social care providers have been approved through an accreditation process. They are also monitored by the council’s contracts team. Commissioners (people whose job it is to buy these services) work with providers to ensure that the services are suitable and value for money.

Types of housing for young people

Continuing to live at home with their family

Official statistics show that the majority of adults with disabilities live with their families or in residential care. Councils are keen to support the young person to stay living in their family home for as long as the family is able to sustain this and meet the young person’s needs. Some support can be provided through outreach support, day activities, short breaks, respite or access to social clubs. This includes services specialising in working with young people, autism and complex health needs.

WSCC’s adult and children’s services can organise short breaks for adults with more complex needs. But be aware that this provision is for all ages, so your young person may not always be with people their own age.

If your young person has a Personal Budget, it can be used to employ Personal Assistants (PAs). We’d suggest that it’s really important to think about what’s best for your son or daughter in the long term – don’t wait until there is a crisis when they may have to move out of the family home.

Support at home costs vary depending on the provider. The money to pay for this can come from the package of support agreed by adult social care and arranged by the council or be managed by the young person or their family as a Direct Payment.

Supported Living or housing

Supported Living – or supported housing, as it’s sometimes called – generally means living in accommodation that has staff on site. There are two main forms of supported living: a ‘group’ home, where people have their own room but share other facilities, or a self-contained flat or studio. For both forms, support may vary from 24-hour staffing to just a few hours a day.

In Supported Living, the young person can have a tenancy agreement, which gives them more housing rights. They can claim housing benefit and keep most of their benefits such as Personal Independence Payment (PIP).

Supported housing focuses on helping the young person to develop their life skills and independence, as well as learning to share the responsibility for cooking, cleaning and shopping. The positive side of this form of accommodation is that the young person will have company as well as the security of a service and staff team.

To access supported living/housing schemes, a young person will have to be assessed by adult social care to see if they are eligible for the service.

Choosing the right supported living scheme

Supported Living is provided by a range of providers in West Sussex. Early planning is the key to identifying the right service for your child as finding the right place can be tricky. Details of supported living accommodation in West Sussex and further afield can be found on the Care Choices website at www.carechoices.co.uk. You just put in your postcode and the type of care you are looking for, then browse the results.

Supported Living is registered as ‘Services in your home’ with the Care Quality Commission (CQC), so it’s subject to a different inspection regime to residential care. You can look up their latest checks on local Supported Living services on the CQC website at www.cqc.org.uk.

Where can I find out more?

The following list is a selection of organisations that have further information about Supported Living schemes, or run their own schemes.

▶    Aldingbourne Trust offers supported living, living in the community and transitional support to help people develop the skills they need to live on their own. For further information, visit: www.aldingbournetrust.org/housing.html.

▶    Chailey Heritage Foundation’s Futures is for young adults aged up to 25 with complex needs and offers a stepping stone to young people moving into adult life. For further information, visit www.chf.org.uk/futures.html.

▶    Grace Eyre supports people with learning disabilities or autism to find a suitable home and offers a supported living scheme. For further information, visit www.grace-eyre.org/what-we-do/independent-living.

▶    Hft offer supported living to people with learning disabilities and complex needs at their base near Arundel. For further information, visit: www.hft.org.uk/about-us/locations/east/hft-sussex.

▶    Mencap has information and advice on supported living, including easy-read guides. For further information, visit: www.mencap.org.uk/advice-and-support/housing.

▶    Outreach 3 Way offers people with learning disabilities or autism supported living services. For further information, visit: www.dimensions-uk.org/about/outreach-3-way.

▶    South Down provides supported living for disabled people across West Sussex. For further information, visit www.southdown.org.

▶    West Sussex Connect to Support has advice on independent living and care options, with links to other organisations that can offer support. Go to www.westsussexconnecttosupport.org.

The Shared Lives scheme

Shared Lives is when the young person lives with another family in their home with the support of that family. Shared Lives is like an adult version of having a foster family. The schemes recruit, assess and support carers who offer accommodation or care and support in their family home.

The Shared Lives scheme can be a good stepping stone for a person with a learning disability or autism moving towards living more independently. Some young people who still live at home with their parents might live with a Shared Lives carer part time, e.g. a few days a week.

To access Shared Lives, a young person needs to be assessed by adult social care to see whether they are eligible for this scheme, so if your child has a social worker, talk to them about this option. A financial assessment will be carried out by the local authority to see if the person needs to make a financial contribution. For further information, visit: www.westsussex.gov.uk/sharedlives.

Residential care

Residential care offers specialist services with high levels of staffing 24 hours a day. It’s for people who need high levels of direct support with personal care and daily living. If a young person is quite independent in these areas, residential care is probably not the right option for them.

Residential care almost always involves living with other disabled people who have been placed there, so there is less choice around who the young person will live with. Many of these homes tend to cater for older people rather than young people. The exceptions to this are some residential care homes for younger people with complex physical or health needs, or complex or challenging behaviours.

Residential care homes vary in size from 3-12 rooms in a house. Most are ordinary homes on ordinary streets. You have to find the right vacancy, and compatibility with other residents can be an issue.

In a residential home, the young person will not have a tenancy – they will have a licence, which means they’ll have fewer rights. It also means that the landlord has access to their room and can change it.

To access residential services, young people will need to be assessed. If the young person meets the eligibility criteria and moves into residential care, they get a full package of support and care – which means all of their accommodation, support and care costs are met by the council. This also means, however, that the person has a low personal income, as nearly all their money goes towards their support and care costs.

You can find details of local care homes in West Sussex and further afield on the Care Choices website at www.carechoices.co.uk.

Care homes have to be registered, so are subject to inspection by the Care Quality Commission (CQC). You can see details and recent inspection reports of care homes on the above website, or on the Care Quality Commission’s website at www.cqc.org.uk.

Social housing

Social housing is property that you rent from the council or a housing association. People living in social housing have a secure or assured tenancy, which means they can only be evicted for breaking certain rules, and then only if a judge agrees. So if a young person sticks to the rules of the tenancy, this could be a home for life.

Social housing has cheaper rents, which can usually be paid in full by housing benefit, depending on the young person’s income. The council or housing association is responsible for most repairs and maintenance.

Unfortunately, there is high demand for social housing in West Sussex, so it can sometimes take a long time bidding before there is an offer of a property. And remember that all of the young person’s support needs will need to be arranged before they move in.

To register for social housing in some areas of West Sussex, you will need to speak to your district council, which will usually have an application form online. Eligibility rules for each housing register vary. You can find contact details for your district or borough council in our directories. Alternatively, go to www.westsussex.gov.uk and search for ‘affordable rented housing’.

To apply for social housing locally in Adur and Worthing, Chichester or Mid Sussex, you need to register with the choice-based letting scheme Sussex Homemove. You can download an application form from the council’s website. For further information, visit www.westsussex.gov.uk and look under Housing, or go to www.homemove.org.uk.

You can also visit any of the local housing offices where staff can help you with form-filling or any queries you may have. You may need to complete a medical self-assessment form for your young person with information about the disabilities, impairments, medical conditions or mental health needs they have.

For young people with mobility needs, there is a separate mobility self-assessment form. Ask the young person’s GP or any other medical worker for supporting information. If the young person has a social worker, you could ask them for a supporting letter.

A word about accessible housing

West Sussex County Council has a register of all their adapted and wheelchair accessible homes. All those applying for the accessible housing register are assessed for mobility needs and coded 1, 2 or 3 depending on the severity of their need. All properties available to let are then advertised as being suitable for particular codes, with the priority going to that group. You can also look for accessible housing on the Accessible Property Register at www.accessible-property.org.

Home ownership schemes

HOLD (Home Ownership for people with Long-term Disabilities) is a government-backed scheme that helps disabled people to buy a shared-ownership home and live independently by buying an initial share in the house that they can afford. If none of the shared ownership homes available can meet the disabled person’s needs, they may qualify to buy a home on the open market. More information is available at www.ownyourhome.gov.uk/scheme/hold.

The private rental sector

This means renting a property owned by a private landlord, which may be a good option for some people as it can be difficult to get social housing owned by a council or housing association in West Sussex.

There are lots of different types of property available to rent privately. You can look for properties in local letting agents, ads in shops, local papers, the Friday Ad or on websites like www.rightmove.co.uk.

Tenancies

Private sector landlords normally give their tenants a six or twelve-month fixed-term Assured Shorthold Tenancy to begin with. After the fixed term is up, the landlord may decide to give another fixed-term tenancy, decide not to but allow the tenancy to continue on what is called a ‘statutory periodic tenancy’ or decide to end the tenancy. If the landlord doesn’t want to extend the tenancy, they must usually give two months’ notice and may have to seek possession through the courts. The landlord is responsible for most repairs and maintenance.

Housing benefit in private accommodation

Rents are higher in the private sector than in social housing. Some rents may be higher than the amount that housing benefit will cover, and some private landlords will not take tenants who are on housing benefit. Contact the housing benefit department to work out how much housing benefit your young person may be able to get.

Moving-in costs

You’ll usually need one month’s deposit and one month’s rent in advance before you can move in, and if you go through an agency you may also have to pay agency fees. If your young person needs support to live independently, you will need to arrange this before they move in.

At the start of the tenancy, when your young person has paid any fees and the initial deposit, the landlord must protect the tenancy deposit in a government-approved scheme. The deposit should be returned at the end of the tenancy, although the landlord can make reasonable deductions from the tenancy deposit if the tenant has caused damage or hasn’t paid the rent. You can find out more about tenancies and your young person’s rights as a private tenant at https://england.shelter.org.uk.

Getting adaptations to housing

The council can help adapt a property whether you own it, rent privately or are a council or housing association tenant. This can include providing equipment to make daily tasks easier, adapting your home to improve access or help with bathing.

Tips on choosing somewhere appropriate

▶    Listen to what your young person wants

▶    Be assertive with social services – if you’re not happy with what’s been offered, push for alternatives

▶    When you visit a possible placement, do the people living there look relaxed and happy with the staff?

▶    Try and find a short break placement that you feel happy with first, for one or two nights a week, so your young person can get used to it. If a placement is available, you may be able to build up the amount of time they spend there

▶    It’s important to have good communication with all the people who are looking after your young person

▶    Give the carers as much information as you can, including your routines

▶    Build a relationship with the carer and be accepting of the fact that they may do things differently

Accept that having less responsibility also means that you have less influence

Section three: Teens and adulthood

Employment and life skills

Many of us hope that, one day, our young person will be able to get a job. Young people are expected to stay in education or training until they’re 18 (they can’t leave school at 16 and get a full-time job as they might have done in the past), but you will still want to help them take the right steps towards employment. Some of us may not see a paid job as a realistic goal for our child but could imagine them volunteering.

This chapter provides an overview of the options available to young people, including volunteering and employment. Further information regarding employment and benefits can be obtained from www.gov.uk.

Where to look for work

▶    If your child is ready to look for a job, a Saturday job or summer job might suit them before they leave school or college. There are many websites that list job vacancies, such as:

▶    The Department for Work and Pensions (DWP) at https://findajob.dwp.gov.uk

▶    The Argus at www.theargus.co.uk/jobs

▶    Gumtree at www.gumtree.com/jobs

▶    West Sussex County Council at www.westsussex.gov.uk/jobs

▶    West Sussex County Times at www.wscountytimes.co.uk/jobs

Alternatively, your young person could visit their local Jobcentre Plus. In West Sussex these are based in Bognor Regis, Chichester, Crawley, Haywards Heath, Horsham, Littlehampton and Worthing. Jobcentre Plus helps employers fill vacancies and provides help and benefits for people who can’t work.

If your young person is looking for work, it often makes sense to approach your contacts and friends. Some of us have persuaded a local shop or business to give our child a few hours’ work experience and this has led to paid work.

But most of our children will need some extra support to be ready for and to find employment. We’ve found that it’s a good idea to talk to other parent-carers and professionals to get some ideas and pick up tips about things. For example, teachers may have good advice on how to find voluntary work or get work experience, and may be able to suggest other sources of help.

There is information for young people aged 13-25 on Your Space, which is a dedicated section of West Sussex County Council’s website for young people. It has links for work, volunteering and apprenticeships. For further information, visit www.westsussex.gov.uk/education-children-and-families/your-space.

Disability Employment Advisers (DEAs)

Disability Employment Advisers (DEAs) work in your local Jobcentre Plus. A referral to a DEA is usually made by a Jobcentre adviser. DEAs can provide details about government initiatives that help disabled people get work and provide referrals to suitable schemes. They can also advise on suitable job vacancies and approach the employer on the young person’s behalf if necessary and conduct an ‘employment assessment’ to identify the young person’s abilities and suitability for work or work-related training.

After making initial contact, the DEA will arrange an in-depth interview with the young person to establish their interests, previous work experience and education and any concerns they have about work. It can be useful for parents to attend but it’s not always necessary.

Access to Work is a scheme that can provide practical and financial support to help people with disabilities into work. The programme can help to pay for:

▶    A communicator to help at interviews if a person is deaf or has a hearing impairment

▶    A reader to help people at work who are blind or have a visual impairment

▶    Special equipment or alterations to existing equipment

▶    Alterations to premises or the working environment to make it accessible

▶    A support worker to provide practical help with work or getting to work

▶    Help towards the cost of getting to and from work if a person can’t use a car or public transport because of their disability

For more information on Access to Work, visit www.gov.uk/access-to-work.

Tips to help you

▶    If your young person is going to places such as Jobcentre Plus, it’s a good idea to take along any paperwork that will help explain their special needs – a recent report from a doctor or educational psychologist, for example

▶    See it as a long-term project to help your young person show what they can do

▶    Volunteering in a charity shop can help them get paid shop work and provide them with a reference for when they leave college

▶    If your young person might want to work with children, see if they can help out with an organisation such as Cubs or Brownies

Internships, traineeships and apprenticeships

Supported internships

Supported internships are a government-funded initiative that offers specialised employment-focused study programmes for young people aged 16-24 with learning difficulties and/or disabilities who have an EHC Plan and are ready to move into employment but need extra help to do so.

Supported internships are run through further education colleges. Trainees will learn from expert career coaches while doing real jobs for a minimum of six months. Employers also receive support from coaches to give them the skills they will need to work with disabled young people and to help them understand the business case for employing a diverse workforce. BASE (British Association for Supported Employment) has more information about supported internships on their website at www.base-uk.org/policy/supported-internships.

Apprenticeships

As employees, apprentices earn a wage and work alongside experienced staff to gain job-specific skills. Off the job, usually on a day-release basis, apprentices receive training to work towards nationally recognised qualifications. Young people over 16 who are not in full-time education can undertake an apprenticeship. They can take between one and four years to complete depending on the level of the apprenticeship, the apprentice’s ability and the industry sector.

Employers and trainers are given incentives to offer apprenticeships to young people with special educational needs and/or disabilities. Grants of £1,000 are available to employers and training providers if they recruit apprentices aged 19-25 who have an EHC Plan. To find out more about supported internships, traineeships or apprenticeships, go to www.gov.uk/apply-apprenticeship. Alternatively, you can also find out about apprenticeships, career tasters and volunteering at www.westsussex.gov.uk/jobs/apprenticeships.

Other initiatives

Supported Employment West Sussex is a partnership initiative run by Aldingbourne Trust’s Workaid and Impact Initiative’s Workability. Workaid provides employment support to people in West Sussex with lifelong disabilities and autism while Workability provides employment support to people with physical and sensory issues, acquired brain injury and carers. The scheme helps people to find employment as well as supporting employers to ensure that the placement is successful. For further information, visit www.supportedemploymentwestsussex.org.

Barnardo’s MAKE TRAX supports young people aged 16-29 who are not in education, employment or training (NEET) and live in Crawley, Horsham or Mid Sussex. For further information, visit www.barnardos.org.uk/get-support/services/make-trax.

The Butterfly Project in Horsham is a social enterprise that supports adults with learning difficulties, autism and other disabilities to engage in work and community activities, so they can develop their skills and build their confidence and self-esteem. For further information, go to their Facebook page at www.facebook.com/TheButterflyProjectHorsham.

Esteem provides volunteering opportunities to help young people gain skills and experience, as well as training workshops and a Mentor Me scheme. For further information, visit https://esteem.org.uk/what-we-offer.

Farm Buddies connects small groups and individuals with local farms so they can visit weekly, usually for a minimum of 12 weeks, and do tasks that are tailored to individual needs. For further information, visit www.farmbuddies.org.uk.

Ferring Country Centre provides training and work experience for young people with learning difficulties to help them go on to do voluntary or paid work. For further information, visit www.ferringcountrycentre.org.

JubyLee Bakes CIO is a charity that was created by a group of young people with special needs producing ‘Special Bakes by Special People’. It is run for young people with a variety of learning disabilities. They hand-make a variety of classic bakes and other treats, and work to strict food hygiene standards in five-star-rated kitchens.

Young people with learning disabilities and other special needs can join JubyLee Bakes as volunteers. They will receive work-based training in baking and food hygiene. There is also a chance to develop other skills, including packaging goods, selling bakes and handling money at events.

Any young person who is interested in joining the team must have a personal assistant (PA) or carer with them who is able to support them (it must be the same PA or carer each week). For more information, go to www.jubyleebakes.org.uk or call the general manager, Ellen, on 01293 526509 or 07709 275278.

The King’s Trust (formerly the Prince’s Trust) runs accredited courses offering support and guidance for children and young people in life skills and education, employment and training. For further information, visit www.kingstrust.org.uk.

Sand Project provides training and work experience in a range of social enterprise settings for 16-25-year-olds with EHC Plans. For further information, visit www.thesandproject.co.uk.

Southdown runs a specialist work and wellbeing service for people aged 16+ with mental health conditions, providing support to secure and retain employment. For further information, visit www.southdown.org/work-and-wellbeing-sussex.

Springboard offers one-to-one tailored support in helping young people with SEND gain and retain a job or volunteering opportunity. Job coaches provide support with topics such as how to write a CV, interview techniques, health and safety at work and professionalism, as well as the opportunity to practise skills in a practical way. They also deliver an eight-week small group life skills programme from their base in Horsham. For further information, visit www.springboardsupport.org/send-services.

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs a social enterprise called Saspire, which offers training and voluntary work experience to support people with spina bifida, hydrocephalus and other related conditions. For further information, visit www.sasbah.org.uk.

West Sussex County Council has a careers team offering support to young people who are NEET (Not in Employment, Education or Training) aged 16-18 or 16-25 with an EHC Plan – see www.westsussex.gov.uk/education-children-and-families/your-space/work/careers-guidance.

Worthing Mencap offers work experience at their community coffee shop, Buddy’s. The placements are for one day per week for six months. Trainees learn a number of core skills including customer service, teamwork, food and drink preparation, front of house skills and health and safety. For further information, visit www.worthingmencap.org/workexperience.php.

Voluntary work

Unpaid voluntary work can be a stepping stone to paid work. Young people can work voluntarily without it affecting their benefits and, even if it doesn’t lead to a job, it’s a way of meeting new people, gaining new skills and getting experience of the working world.

Young people can gain volunteering experience through the Duke of Edinburgh Award. It offers young people aged 14-25 the opportunity to help others, acquire new skills, experience adventure and make new friends while working towards a nationally recognised award. Young people with SEND are welcome. Some centres have specialist knowledge in delivering DofE for young people with additional needs, so if you have questions about accessibility or meeting your young person’s needs, email dofe@westsussex.gov.uk (local) or www.dofe.org (national).

There are also volunteering opportunities available with West Sussex County Council. To find out more, go to www.westsussex.gov.uk/volunteering.

Concordia Youth Action (CYA) is open to all young people who would like to develop their skills and meet like-minded people through volunteering and social action. For further information, visit www.concordia.org.uk.

Section three: Teens and adulthood

Travel for young people

Travelling independently is an important part of growing up, but for some young people this will always be difficult without support. This chapter looks at ways of making travel easier and includes information about special allowances and concessions available to disabled young people.

Travelling to college

Help for all young people

16-17 Saver is a card that allows young people aged 16-17 to get 50% off most rail fares. The card costs £30 per year and can be used on your phone via the Railcard app, or it can be posted to you. For further information, visit www.16-17saver.co.uk.

16-25 Railcard entitles the cardholder to 33% off rail fares. It costs £30 per year or £70 for three years. Mature students can also apply for an annual railcard, as long as they can provide evidence that they are in full-time education. For further information, visit www.16-25railcard.co.uk.

Metrobus offers 25 percent off adult fares for students over 16 in full-time education and young people on apprenticeship programmes on Metrovoyager, Crawley Metrorider and Horsham Metrorider tickets. To get the discount, students must register for a free student key card, which can then be topped up online or at the Metrobus travel shop in Crawley. For further information, visit www.metrobus.co.uk/students.

Plusbus is a scheme where travellers can add unlimited bus or tram travel around a town or city served by rail, so you can use the bus to get to or from the station, for example. For further information, visit www.plusbus.info.

Stagecoach offers discounted tickets for school, college and university students. For further information, visit www.stagecoachbus.com and click on ‘buy tickets’, then select ‘student tickets’ from the drop-down menu to find out what’s available in your area.

Young Person’s Coach Card is run by National Express and offers a third off fares to young people aged 16-26 and full-time students – see www.nationalexpress.com/en/offers/coachcards/young-person. They also offer separate discounts for people with disabilities.

Help related to disability or SEND

If you think your child will need support getting to and from college, flag it up with their senior planning coordinator during their Year 11 annual review.

West Sussex County Council has a transport policy statement for students in further education on its website. Transport may be available if your young person meets the eligibility criteria. Parents will be asked to make a contribution towards transport costs unless the family is on a low income. For more information, visit www.westsussex.gov.uk/schooltransport and click on ‘Post-16 and college transport for students with SEND.

Schools and colleges also have a 16-19 Bursary Fund for students from low-income families who may not meet the eligibility criteria for help with transport.

Independent travel training

Some schools and colleges offer independent travel training to help young people to get about on their own. Ask your child’s school or college about travel training, what’s involved and how you can help your child learn these skills. Giving this a try should not mean your child’s existing transport arrangements will be cancelled.

Some short breaks or one-to-one buddying schemes offer trips out in the community for young people. As part of this, there may be opportunities for young people to travel on public transport, which can be a good time to practise journey planning and build independence.

Using technology to help

If your young person has a mobile phone, it can be used to encourage independence and provide parent-carers with reassurance. The easiest way to do this is for your young person to check in with a text every now and then, e.g. to let you know when they leave and arrive somewhere.

However, if you feel you want more reassurance, a number of location apps are available. These offer the option for tracking in real time and may be of particular benefit during the first few journeys your young person makes independently.

bSafe is an app available on Android and iOS that can be operated by touch or voice command. It offers the option for your child or young person’s location to be shared with contacts so you can track their journey via GPS. There’s also an SOS button, which records sound and video when pressed as well as calling for help.

Find My Friends is a similar app that allows you to broadcast your location to friends. There are versions for Android and iOS.

Life360: Find Family & Friends is a free app for iOS and Android that allows you to choose two locations, such as ‘home’ and ‘school’. When your child sets off for school, the app checks them in and sends you a text to let you know they’ve arrived safely. There is also a ‘panic’ option, which sends texts and emails to carers showing your child’s precise location. The paid option allows you to choose additional locations.

What3Words is an app recommended by emergency services. You can use it to share a precise location with others, which is useful for meeting people – but it can also save lives when people need help but aren’t sure of their exact location.

Some tracking apps, like Find my Friends and Life360, also allow you to set up geofences – boundaries within which your child can move freely, but if they cross the geofence, a notification will go to your phone to let you know. This could be useful to allow parent-carers to gradually expand the area for independent travel and for teens who have just started to drive, for example.

There is also an array of wearable tech including smart watches with built-in GPS trackers, some of which can also make calls to pre-programmed numbers. There are also pocket trackers, which can be slipped in a bag or jacket. Some have built-in panic buttons that can be programmed to call your mobile phone. There are also GPS trackers that can be clipped to clothing or slipped into shoes.

Journey planning

Teaching young people to plan their journeys is an important part of travel training, and there are lots of local and national resources that you can use to help your young person work out their route, timings and more.

West Sussex County Council has a dedicated cycle route planner, which is available as a free app for most smartphones. For further information, visit www.westsussex.gov.uk and search for ‘cycle journey planner’. For travel information on local journeys by bus, go to their website and search for ‘bus routes and timetables’. You can also go to www.traveline.info to plan journeys and compare travel options.

If you’re planning to travel in and around London, Transport for London (TfL) has a journey planner on its website at www.tfl.gov.uk, as well as information on assisted travel. It also offers a travel mentoring service to support people to plan journeys and, if needed, a person to accompany you on the first few journeys. For more, go to https://tfl.gov.uk/transport-accessibility.

For local and national rail travel, contact National Rail Enquiries or visit their website at www.nationalrail.co.uk. For more on accessibility at national rail stations, go to www.nationalrail.co.uk/stations_destinations/default.aspx and search by station name.

Online resources like Google maps and sites like www.streetmap.co.uk allow you to plan journeys from one point to another and provide you with text and map details that you can print out.

Other support with public transport

Helping Hand

This is a card scheme supported by several bus companies in West Sussex including Big Lemon, Compass Travel, Stagecoach, Metrobus, Southdown PSV and Brighton and Hove Buses in East Sussex. It is a simple card that the holder can hand to the driver to give them extra information such as ‘Can you call out the correct stop?’ or ‘Needs priority seating’. For further information, visit www.metrobus.co.uk/helping-hand.

Community transport

There are various community transport service providers operating across West Sussex that can help people who have difficulty using public transport. Some buses have a passenger lift or a low-level floor, so they’re ideal for people who can’t manage steps or who use a wheelchair. Drivers are trained to help passengers on or off the bus and to make sure the journey is smooth and comfortable. You can find out more about the services on offer in your area by going to www.westsussex.gov.uk/communitytransport.

National coach travel

Disabled adults can also apply for a National Express Disabled Coachcard, which offers a third off travel throughout the UK. For further information, visit www.nationalexpress.com/en/offers/coachcards. There is a charge for the card and it is valid for a year. National Express also offers an assisted travel service, which you can find out about at: www.nationalexpress.com/en/help/accessibility. If your young person is a wheelchair user, they recommend that you book assistance at least 36 hours before you travel by calling 0371 781 8181.

National train travel

Your young person may qualify for a Disabled Person’s Railcard if they have a disability that makes travelling by train difficult. The card offers the young person and an adult companion a third off most fares across the UK. For more information, go to www.disabledpersons-railcard.co.uk.

The Disabled Person’s Railcard can be registered to an Oyster card, which gives people a third off fares on the London Underground. Holders can also get a third off an Off-Peak Travelcard for one adult travelling with them. There is usually a charge of £20 for a Disabled Person’s Railcard.

West Sussex County Council offers a one-year Disabled Person’s Railcard which can save a third off travel for you and a friend. It has to be renewed annually. They also offer a free disabled person’s bus pass, which is usually valid for five years. You can find further information on both at www.westsussex.gov.uk.

Southern Rail also offers a free Travel Support Card, designed to help anyone who finds it tricky to ask for help when travelling. The card can include details about your journey, what you might need help with and who to contact in an emergency. To find out more, go to www.southernrailway.com/travel-information/travel-help/assisted-travel/support-whilst-travelling.

Access and assistance with rail travel

When travelling by train, you can book special assistance so rail staff will help you during your journey, which could include someone to:

▶   Meet you at the entrance/meeting point and accompany you to your train

▶   Provide a ramp on and off your train if you need one

▶   Meet you from your train and take you to your next train or the exit

▶   Carry your bag

You can book help at short notice – although some companies ask for up to 24 hours’ notice – by calling 0800 022 3720, or by filling in the online form at www.disabledpersons-railcard.co.uk/using-your-railcard/passenger-assist. You can also book in person at any staffed train station.

Taxi travel

Taxi companies provide wheelchair accessible cabs, but there are a limited number of cabs available, so you may have to wait longer. It’s best to book them in advance.

In Mid Sussex, if a young person is over 18 and qualifies for a Disabled Person’s Bus Pass but cannot use buses because of their needs, they may be eligible for taxi vouchers instead of the pass. For further information, visit www.midsussex.gov.uk/travel.

Travelling by car

Vehicle Tax Exemption

Young people are exempt from paying vehicle tax if they:

▶    Receive the higher rate mobility component of DLA or the enhanced rate mobility component of Personal Independence Payment (PIP). If you or your child or young person receives the PIP standard rate mobility component, they can get a 50% reduction in vehicle tax. You cannot get a reduction for DLA lower rate mobility component

▶    Have a car that is only used by or for them. The car could be owned either by the young person or by their parent or carer. The vehicle must be registered in the disabled person’s name, or their nominated driver’s name (this may be you as their parent-carer). The vehicle must only be used for the disabled young person’s needs. It cannot be used by the nominated driver for their own personal use

To apply, you must get a Certificate of Entitlement to show that your young person gets PIP or DLA – call 0800 121 4433 (PIP) or 0800 121 4600 (DLA). Then take the certificate to your Post Office, along with the vehicle’s V5 and a valid MOT certificate. For more information, go to www.gov.uk/financial-help-disabled/vehicles-and-transport.

Blue Badges

If your young person gets the higher rate mobility component of DLA, or eight points or more under the ‘moving around’ section of the mobility component of PIP, they will be entitled to a Blue Badge. A person who is severely sight-impaired will also meet the required criteria. It is possible to get a Blue Badge if you don’t claim DLA/PIP but ‘have a permanent and substantial disability which means you are unable to walk; or you have very considerable difficulty in walking’. In this case a young person may need to attend a mobility assessment clinic. There is a fee for issuing the badge. A booklet is issued with every Blue Badge to explain how to use it properly.

The Blue Badge scheme in West Sussex is run by the county council. For further information, visit www.westsussex.gov.uk and search for ‘blue badge’.

Motability

Motability is a scheme that means some of the money from the mobility component of Disability Living Allowance (DLA) or Personal Independence Payment (PIP) can be used to lease a car. If your child receives the higher rate mobility component of DLA or the enhanced rate of mobility for Personal Independence Payment (PIP) and it has at least a year to run, you or the young person (if they are 16+) can use the mobility part of the allowance to lease a car, scooter or powered wheelchair.

Some disabled people have found, under PIP’s tougher rules for assessing problems with walking, that although they were eligible for Motability under DLA they are not when they are reassessed for PIP. If this happens, the person’s Motability vehicle has to be returned. You can find further information on this by going to their site at www.motability.co.uk and searching for ‘unsuccessful PIP reassessment’, or you can call 0300 456 4566.

Learning to drive

Young people can begin to learn to drive at 17, unless they receive the higher mobility component of DLA or the standard or enhanced mobility component of PIP, in which case they can start learning when they are 16.

The Family Fund offers grants to help eligible young people aged 16-17 take the first steps in learning how to drive. Their Driving Ambitions grant supports the young person to get started by funding a combination of a provisional licence, theory test, range of learning materials and first taster lesson. This is only available for an eligible young person who has not yet had any driving lessons. For further information, visit www.familyfund.org.uk/grants/schemes/your-opportunity.

If your young person is a Motability customer already, the Motability Foundation may be able to help with the cost of driving lessons. For further information, visit www.motabilityfoundation.org.uk/charitable-grants.

There are several Driving Mobility Centres around the country that provide advice about learning to drive. The nearest centres are in Worthing and Uckfield. For further information, visit www.drivingmobility.org.uk.

A number of organisations offer driving experiences for under-17s. Admiral’s Young Driver Scheme offers half-hour lessons for children aged 4-17, which can be a great introduction to driving in a safe environment. They are fully inclusive and experienced at teaching young people with disabilities, and offer lessons in adapted cars with hand controls for wheelchair users. For further information, visit www.youngdriver.eu.

The theory test

The driving test is made up of a theory and a practical section. Theory tests are usually held at test centres, which are generally wheelchair accessible and offer specialist facilities for disabled people. If your local centre isn’t accessible to your child, they can take the test at home or at a different centre. You can discuss access requirements with the Driving and Vehicle Standards Agency (DVSA) by emailing theorycustomerservices@dvsa.gov.uk or calling 0300 200 1122.

If your young person has reading difficulties, disabilities or health conditions, make sure they say so when they book the test – see www.gov.uk/theory-test/reading-difficulty-disability-or-health-condition. It usually takes around 40 minutes to complete the written test, but some young people may be eligible for extra time, someone to help them or other adjustments.

The practical test

No matter how serious a young person’s disability might be, they will take the same driving test as everyone else. When booking the practical test, young people should let the DVSA know about their disability, reading difficulties or health condition because they may be entitled to adjustments. Call 0300 200 1122 or go to: www.gov.uk/driving-test/disability-health-condition-or-learning-difficulty.

If your child has an autistic spectrum condition, the National Autistic Society has advice about learning to drive and links to other resources – go to www.autism.org.uk/advice-and-guidance/topics/transport/driving/england.

Pass Plus

For drivers who have recently passed their theory and practical test, it’s worth considering taking part in Pass Plus. This is a six-hour course specifically designed to help young drivers to drive more safely. Successfully completing the course in addition to passing the driving test can reduce the insurance excess for young drivers. For more, go to www.gov.uk/pass-plus.

Section four: Directories

Local directory

Note: listings marked (SB) are Short Breaks providers.

All details were checked and verified at the time of editing and publication.

4Sight

Specialist advice and support for blind and partially sighted people of all ages across West Sussex, enabling them to live life without limits.

Tel: 01243 828 555

Email: enquiries@4sight.org.uk
www.4sight.org.uk

Action for Deafness

Delivers adult audiology services for adults in West Sussex on behalf of the NHS and provides advice, support and information to enable deaf people to lead independent lives.

Tel: 01444 415582

Email: info@actionfordeafness.org.uk
www.actionfordeafness.org.uk

Active Sussex

Aims to increase participation in sport and physical activity, incorporating Sussex Disability Sports Network (SDSN).

Tel: 07760 164001

Email: info@activesussex.org
www.activesussex.org

Adults’ CarePoint

Social care support or advice for over-18s (for under-18s, see Integrated Front Door).

Tel: 01243 642121
www.westsussex.gov.uk/social-care-and-health/social-care-support/adults

Adur Special Needs Project (ASNP)

Out-of-school respite care and play schemes in the Shoreham area for children aged 5-15 with special needs.

Tel: 07788 239634

Email: info@adurspecialneedsproject.org.uk
www.adurspecialneedsproject.org.uk

Advance Centre (East Grinstead)

Teaching institute for parents in the methods of the Scotson Technique (TST), which seeks to enhance oxygen supply to the body tissues to help with various conditions and disabilities. Also offers hyperbaric oxygen therapy.

Tel: 01342 311137

Email: info@advancecentres.com
www.advancecentres.com

The Advocacy People

Provides advocacy to children, young people and adults accessing social care and mental health services.

Tel: 0330 440 9000

Email: info@theadvocacypeople.org.uk
www.theadvocacypeople.org.uk

The Advocacy Service

Works directly with young people to ensure that their wishes and feelings are heard and given weight in the decisions that adults (carers and professionals) make about their lives. Advocacy is independent, young person-led and issue-based.

Tel: 0330 222 8686

Email: AdvocacyService@westsussex.gov.uk
www.westsussex.gov.uk/education-children-and-families/your-space/life/advocacy

Aldingbourne Trust

Individually tailored care and support for people with learning disabilities and their families. Offers a wide range of services from supported living to job training and life skills programmes.

Tel: 01243 544607

Email: info@aldingbourne.org
www.aldingbournetrust.org

Allsorts Youth Project

Safe space for LGBT+ (lesbian, gay, bisexual, trans and those exploring their sexual orientation and/or gender identity) children and young people under 26 to meet and access support in locations across Sussex, and online, in a confidential setting. A family service with one-to-one and peer support is also available.

Tel: 01273 721100

Email: youth@allsortsyouth.org.uk or families@allsortsyouth.org.uk
www.allsortsyouth.org.uk

Andy’s Angels

Bereavement support for adults and children grieving the loss of a loved one.

Tel: 07465 242321

Email: info@andysangels.org.uk
https://andysangels.org.uk

Angling4Education (SB)

Delivers fun educational holiday and weekend provision around fishing and the environment for young people with SEND and their families. Also offers activities-based Alternative Provision for education via intensive one-to-one support or in small therapeutic groups.

Tel: 01273 968126 or 07795 410812

Email: angling4education@gmail.com
www.angling4education.com

Apprenticeships in West Sussex

Helps parent-carers and young people search for apprenticeship training in the county.

Email: info@sctp.org.uk
www.apprenticeships-in-sussex.com

Apuldram Centre

Offering daycare, community hub and supported living, to enable 139 adults with learning disabilities to maximise their independence.

Tel: 01243 783370

Email: rory.massey@apuldram.org
www.apuldram.org

Ariel Othellos SEN

Drama, dance and singing for children and young people with special needs. Othello (7-19-year-olds) and Othello Plus (16+). Meets at various venues across West Sussex.

Tel: 01444 250407

Email: arielothellos@arielct.com
www.arielothellos.com

Arun Sunshine Group for Adults with Learning Disabilities

Social club meeting twice monthly in Littlehampton, offering arts, crafts, games and days out, supporting adults with learning disabilities to thrive and build confidence.

Tel: 07958 777027

Email: kim@arunsunshinegroup.org.uk
www.arunsunshinegroup.org.uk

Arun Counselling Centre (Littlehampton)

Confidential counselling service offering low-cost and bursary-supported sessions depending on individual circumstances.

Tel: 01903 714417
www.aruncounselling.com

Ashdown Centre – see Guild Care (Worthing)

Aspens (SB)

Provides a variety of support for those aged 8+ with a range of disabilities and complex needs, as well as those on the autism spectrum. Services in West Sussex include family support (including sibling support and positive behaviour support), children and young people’s groups and services, adult supported living, community outreach and adult residential care. Also delivers the Autism Central South East Hub Peer Education Programme in Sussex for parents and carers.

Tel: 01243 214120

Email: childrenreferrals@aspens.org.ukor familysupport@aspens.org.uk
www.aspens.org.uk

AudioActive

Music can be a tool for social change and could potentially become someone’s career. Projects are as accessible as possible for young people across Sussex. Open access evening sessions run weekly during term time at venues across Sussex and are for people aged 12-25 unless otherwise specified.

https://audioactive.org.uk

Autism and Social Communication Team (ASCT) (WSCC)

A team of specialists with expertise in autism and social communication difficulties (SCD) who aim to promote the educational, social and emotional development of children/young people, working with their parents and educational settings. Referrals should be made via schools.

Email: SchoolsABC@westsussex.gov.uk
https://schools.westsussex.gov.uk/Page/19632

Autism Support Crawley

Support group for parents and carers of children and adults on the autism spectrum or with social communication difficulties. Also has a Facebook group. See website for dates and times of meetings.

Tel: 07596 737741

Email: via online form on website
www.autismsupportcrawley.co.uk

Barnardo’s Make Trax

Offers information, guidance and support to young people aged 16-29 who are not currently in paid employment or education.

Tel: 07523 803759

Email: nicola.haynes@barnardos.org.uk
www.barnardos-ets.org.uk/centre/make-trax

Be OK: West Sussex MIND

Offers one-to-one support, group sessions and peer mentoring for young people aged 16-25 with mental health problems who live in Worthing, Adur, Chanctonbury, Chichester, Midhurst, Littlehampton or Bognor Regis. Young people can self-refer to the service.

Tel: 0300 3030 5652

Email: helppoint@westsussexmind.org
https://e-wellbeing.co.uk/services/west-sussex-mind-be-ok-ws

Be OK: Youth Mental Health

Offers one-to-one support, group sessions and peer mentoring for young people aged 16-25 with mental health problems who live in Crawley, Horsham and Mid Sussex. Young people can self-refer to the service.

Crawley

Tel: 01293 534782
Email: pathfinder.crawley@sussexoakleaf.org.uk

Mid Sussex

Tel: 01444 416391

Email: pathfinder.bhtsussex@nhs.net
https://e-wellbeing.co.uk/services/be-ok-youth-mental-health

Bears Basketball

Brighton/Lancing-based basketball club, keen to promote inclusion of children and young people with additional needs in their teams. No wheelchair teams at present. Call for an informal discussion about specific needs.

Tel: 07901 357500 (Charlotte Curran)

Email: office@bearsbasketball.co.uk
www.bearsbasketball.co.uk

Belltree Music Therapy CIC (Hove)

A professional music therapy service for people of all ages and abilities in Brighton and Hove and across Sussex. There is also a series of online videos and resources.

Tel: 07779 135299

Email: info@belltree.org.uk
www.belltree.org.uk

Bevern Trust (Lewes) (18+)

Enabling people with profound disabilities to live their lives to the full.

Tel: 01273 400752

Email: info@beverntrust.org
www.beverntrust.org

Blatchington Court Trust

Information, support, counselling and IT training for visually impaired people under the age of 30.

Tel: 01273 727222

Email: info@blatchingtoncourt.org.uk
www.blatchingtoncourt.org.uk

Blue Badge Scheme (WSCC)

If your child is in receipt of DLA or PIP, you may be able to apply for a Blue Badge to help you to park.

Tel: 01243 777653

Email: blue.badges@westsussex.gov.uk
www.westsussex.gov.uk/roads-and-travel/parking/the-blue-badge-scheme

Blue Starfish Club (Worthing) (16+)

Club nights run three times a year, providing those with learning disabilities aged 16+ with an opportunity to socialise and show their skills as DJs and musicians. Run by Worthing Mencap and others.

Tel: 01903 202030
www.worthingmencap.org/bluestarfish.php

The Bridge Leisure Centre (Broadbridge Heath, Horsham)

Has a purpose-built sensory room designed for disabled children and adults. Call the number below to arrange private hire.

Tel: 01403 211311
www.placesleisure.org/centres/the-bridge-leisure-centre/centre-activities/family-kids

Brighton and Hove Albion Foundation (SB) (formerly Albion in the Community)

Charitable foundation connected to Brighton and Hove Albion FC. Runs disability-specific and inclusive football sessions (ages 6+) in the Brighton and Sussex area.

Tel: 01273 878265

Email: info@bhafcfoundation.org.uk
https://bhafcfoundation.org.uk

Brighton Buccaneers Wheelchair Rugby

Wheelchair rugby club based in Brighton, training Sunday mornings. Welcoming players aged 16+.

Tel: 07565 177023

Email: brightonbucc@gmail.com
www.facebook.com/brightonbuccaneers

Brighton, Hove and West Sussex Deaf Children’s Society

Provides support, information, Facebook group, regular coffee mornings, fun and friendship to deaf children and their families.

Tel: 07591 074011

Email: committee@bhwsdcs.org.uk
www.facebook.com/bhwsdcs

Brooklands Park and playground (Worthing)

Has an inclusive playground for children and young people. The wheelchair swing and the gate to access it can be unlocked with a RADAR key.

Western Road, Worthing, BN15 8SA
www.adur-worthing.gov.uk/parks/find/worthing/brooklands-park

The Butterfly Project

Horsham town centre-based support hub for adults (16+) with learning disabilities, autism and other associated needs looking to gain life skills, employment skills and make new friends. Offering a range of services including a day service (support hub), supported living services, outreach support and activity/respite holidays.

Tel: 01403 248580

Email:
admin@thebutterflyprojecthorsham.co.uk
www.thebutterflyprojecthorsham.co.uk

Carers Support West Sussex (CSWS)

Free, confidential and impartial information and support including benefits advice via their helpline, website and groups for adult carers (18+). They also provide equipment and assistive technology for disabled people and their carers, along with the Carer Emergency Contact Card.

Tel: 0300 028 8888

Email: info@carerssupport.org.uk
www.carerssupport.org.uk

Carousel (Brighton)

Supports artists with learning disabilities to explore and develop their artistic talents in film, music, digital and broadcast media.

Tel: 01273 234734

Email: enquiries@carousel.org.uk
www.carousel.org.uk

Chailey Clinical Services (Sussex Community NHS Foundation Trust)

Specialist multi-disciplinary team (MDT) providing clinical care services for children and young people with complex neurodisabilities. Offers a range of other therapies and services such as the Rehabilitation Engineering Service, Posture Clinic and Bluebells Short Breaks. See website for full details and referral information.

Tel: 01825 722112
www.sussexcommunity.nhs.uk/patients-and-visitors/services/chailey-clinical-services

Chailey Heritage Foundation

A leading centre in the UK for children and young people with complex neurodisabilities, providing education and care services. Services for children and young people include Chailey Heritage School and the Home from Home Residential Service. For ages 16+ they offer the Leisure and Skills Centre and The Hub daycare and respite service. Residential care for young adults aged 19-25 is provided by Chailey Heritage Futures.

Tel: 01825 724444

Email: via online form
www.chf.org.uk

Challengers (Chichester Youth Scheme) (SB)

Activity scheme for 13-18-year-olds with SEND. Runs on Saturdays and during Easter and summer holidays.

Tel: 01483 230930

Email: playandleisureteam@disability-challengers.org
https://disability-challengers.org/youth

Chanctonbury Community Playscheme (CCPS)

A charity-led playscheme running for three weeks of the summer holidays. Open to children aged 5-19 with an EHC Plan. Places need to be applied for.

Email: ccpsorganiser@gmail.com
www.facebook.com/ccpsplayscheme

Charlotte’s Tandems

Free loan of tandems and tag-alongs to people with SEND who are unable to ride a bike safely alone. Includes accessories (e.g. helmets) if needed.

www.charlottestandems.weebly.com

ChatHealth

Confidential text messaging service for parents (of children aged 0-19) and young people (aged 11-19) in West Sussex. Provided by Sussex Community NHS Foundation Trust for help and advice on a range of issues. Responses will be within 24 hours, Monday to Friday (except bank holidays).

Text: 07312 277163 - Advice for parents of under-5s in West Sussex

Text: 07312 277011 - Advice for parents of 5-19s in West Sussex

Text: 07480 635424 - Advice for young people aged 11-19 in West Sussex
https://chathealth.nhs.uk

Chestnut Tree House Children’s Hospice Care (Arundel) (SB)

Children’s hospice covering all of Sussex and beyond for children and young people with progressive life-shortening conditions. Referrals accepted from professionals and families for children (aged 0-17) and, in special circumstances, pre-birth or young people over 17. Also provides activities and support to family members (including siblings) of children cared for by the organisation and those who have been bereaved.

Care enquiries
Tel: 01903 871800

Email: cthadmin@chestnut-tree-house.org.uk

Non-care enquiries (weekdays only)

Tel: 01903 871820

Email: via online form
www.chestnut-tree-house.org.uk

Chichester Archers

Inclusive archery club at Oaklands Park in Chichester offering taster sessions, courses and membership. Ages 10+.

Email: via online form
www.chichester-archers.co.uk

Chichester Careline

Various support services for carers in the Chichester district, including the Carers Emergency Alert Card and personal alarms.

Tel: 0330 678 1675

Email: chichestercareline@ppptakingcare.co.uk
www.taking.care/chichester

Chichester Counselling Services

Affordable counselling for adults (18+).

Tel: 01243 789200

Email: via online form
www.ccs-counselling.org.uk

Chichester and Arun Down Syndrome Support Group

Support group for families of people with Down syndrome in Chichester, Bognor and surrounding villages.

Email: cdssgwelcome@gmail.com
https://chichesterdownsyndromehome.wordpress.com

Chichester Fencing Club

Inclusive and wheelchair fencing lessons for children and adults in Chichester.

Tel: 07392 801701

Email: admin@chichesterfencingclub.com
www.chichesterfencingclub.com

Chichester Festival Youth Theatre

Includes sessions in Chichester and Horsham specifically for young people aged 14-25 with additional needs.

Tel: 01243 784437

Email: cfyt@cft.org.uk
www.cft.org.uk/young-people/chichester-festival-youth-theatre

Chichester Golf Club

Has a wheelchair accessible outdoor adventure golf course.

Tel: 01243 533833

Email: info@chichestergolf.com
https://chichestergolf.com

CAMHS – see Sussex Child and Adolescent Mental Health Services (CAMHS)

Child Development Centres (CDCs)

Centres where staff from various health teams (e.g. paediatricians, physiotherapists and occupational therapists) assess and treat children (aged 0-19) who have developmental and special needs.

Chichester: 01243 793639

Crawley and Horsham: 01293 301010

Haywards Heath: 01444 414100

Worthing: 01903 205111
www.sussexcommunity.nhs.uk/patients-and-visitors/services/child-development-services

Child specialist nursing

Working directly with parents to further understand their child’s difficulties, support their development and promote resilience, confidence and knowledge while considering the impact of the child’s needs on the whole family. Working closely with education, children’s services and voluntary services. If you feel you or your child would benefit from specialist nursing, please speak to a professional who works closely with them, such as a paediatrician, health visitor or school nurse.

Children and Young People’s Continence Team

A nurse-led team that provides a specialist continence service to children and young people. Supports families whose children have ongoing difficulties with bladder or bowel control, constipation, withholding and other toileting issues.

Tel: 01273 242145

Email: sc-tr.childrenscontinence@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/children-and-young-peoples-continence-team

Children’s Audiology

Specialises in the assessment and management of hearing and hearing therapy for children aged 0-16. Referrals can be made by the child’s GP, health visitor or another health professional involved in their care. Alternatively, parents can complete a self-referral form if certain criteria are met.

Crawley and Horsham

Tel: 01293 301000

Email: SC-TR.childrensaudiologycrawley@nhs.net

Mid Sussex

Tel: 01444 414100 ext. 4856

Email: SC-TR.chidrensaudiologymidsussex@nhs.net

Worthing and Chichester

Tel: 01903 285013

Email: uhsussex.audiologyworthing@nhs.net

Children and Young People’s Community Nursing Services

Home and community-based nursing for children and young people (aged 0-19), treating acute short-term conditions, long-term conditions, complex health needs, disability and continuing care needs, and children with life-limiting and life-threatening conditions.

Chichester: 01243 793619

Crawley: 01293 301013

Worthing: 01273 696011, ext. 6200
www.sussexcommunity.nhs.uk/patients-and-visitors/services/children-and-young-peoples-community-nursing-services

Children’s Residential Care (West Sussex County Council)

There are several homes in West Sussex for children and young people with additional needs, but these placements can only be accessed via Children’s Social Care.

Cineworld Cinemas (Chichester, Crawley, Brighton)

Autism-friendly screenings on the first Sunday of every month.

www.cineworld.co.uk

Circles Network

A charity working to promote social inclusion and personal empowerment. Services offered include advocacy, transition planning and parent support.

Tel: 07468 753017

Email: info.southeast@circlesnetwork.org.uk
www.circlesnetwork.org.uk

Citizens Advice in West Sussex

Free, independent and confidential advice on everything from benefits, money and debt to housing, health and law. Self-help information available on the website. Meet online or face-to-face at a local office or outreach centre. Appointments preferred, but some locations allow drop-ins.

Offices: Arun, Chichester, Crawley, East Grinstead, Haywards Heath, Horsham, Shoreham and Worthing

Outreach centres: Broadfield, Haywards Heath (Bentsford hub), Lancing and Midhurst

Tel: 0808 278 7969

Email: via website
www.advicewestsussex.org.uk

Cobnor Activities Centre Trust

Outdoor activities centre for children and young people with and without special needs. Wheelchair accessible.

Tel: 01243 572791

Email: sail@cobnor.com
www.cobnor.com

Community Equipment Service

Access to equipment is via a GP, occupational therapist, physiotherapist or community nurse. For delivery, collection, repair or servicing of equipment, contact Millbrook Healthcare. Go to the website below and search for ‘equipment service’.

Tel: 0345 127 2931

Email: westsussexcontactus@millbrookhealthcare.co.uk
www.westsussex.gov.uk

County Deaf Services

Advice, assessments and provision of specialist equipment for adults who are deaf or have hearing loss. For further information, go to the website below and search for ‘county deaf services’.

Tel: 01243 642121

Email: county.deaf.services@westsussex.gov.uk
www.westsussexconnecttosupport.org

Crawley BMX Track

Inclusive BMX track with specially adapted bikes and part-time instructors.

Tel: 01293 585355

Email: Wellbeing@crawley.gov.uk
www.crawley.gov.uk

Crawley Jets Wheelchair Rugby

Wheelchair rugby team training on Monday evenings at the K2 Leisure Centre. The team is part of the Crawley Rugby Club. Age 16+.

Tel: 01293422063 or 07967 169121
www.crawleyrfc.com

Crawley Town Community Foundation

Charitable arm of Crawley Town FC, offering a range of mainstream, inclusive and disability football and sport sessions.

Email: community@crawleytownfc.com
www.ctcommunityfoundation.com

Crawley Town Flyers

Weekly football training sessions for young people with SEND aged 16+ at the K2 in Crawley.

www.ctcommunityfoundation.com/crawley-town-flyers

Crawley Wellbeing (Disability Sports Sessions)

Organises weekly opportunities for people with disabilities to participate in sport, including the Gateway Club, Flamingoes swimming club, Gravity and Out There, as well as Wheels for Wellbeing. Locations within Crawley.

Tel: 01293 585350

Email: wellbeing@crawley.gov.uk
www.crawley.gov.uk/wellbeing
www.facebook.com/CrawleyWB

Cycall (Worthing)

Gives disabled children and adults and people with health issues a chance to experience cycling using adapted bicycles. Sessions are run at Brooklands Park, Worthing. No charge but booking is essential.

Tel: 07784 918122

Email: cycallworthing@gmail.com
www.cycall.info

Day Opportunity Services (West Sussex Social Care)

Day support and day opportunities can help individuals aged 18+ stay independent and give carers a break.

Burnside - Burgess Hill

Chestnuts - Bognor Regis

Glebelands - Shoreham-by-Sea

Judith Adams Centre - Chichester

Strawford - Horsham

The Laurels - Rustington

The Rowans - Worthing

Email: socialcare@westsussex.gov.uk
Phone: 01243 642121
Calls using Relay UK: 18001 01243 642121
(for deaf callers from a textphone or the NGT Lite app downloaded onto a computer, tablet or smartphone)

District and Borough Councils

Adur and Worthing: 01273 263000

Email: helppoint@adur-worthing.gov.uk

Arun: 01903 737500

Email: info@arun.gov.uk

Chichester: 01243 785166

Email: contact@chichester.gov.uk

Crawley: 01293 438000

Email: comments@crawley.gov.uk

Horsham: 01403 215100

Email: customer.services@horsham.gov.uk

Mid Sussex: 01444 458166

Email: enquiries@midsussex.gov.uk
www.westsussex.gov.uk

Dome Cinema (Worthing)

Cinema providing disability-friendly screenings for those with learning disabilities or on the autistic spectrum.
The screen has one wheelchair space, pre-booking is advisable. Parent-carers must stay.

Tel: 01903 823112

Email: office@domeonline.co.uk
www.domecinema.co.uk

Downsman Bowls Club

Inclusive bowls club in Crawley welcoming people of all ages and abilities. Incorporates Crawley Blind and Disabled Bowlers.

Email: info@downsmanbowls.co.uk
https://downsman.secure-club.com

Drusillas Park

Accessible zoo located in Alfriston, near Eastbourne. Changing Places toilet located in the Go Wild! area, behind the Amazon Adventure soft play.

Tel: 01323 874100

Email: info@drusillas.co.uk
www.drusillas.co.uk

Duke of Edinburgh Award (DofE) (West Sussex)

National, inclusive award scheme for all young people aged 14-25. Email for specific information about local award centres and accessibility.

Email: dofe@westsussex.gov.uk
www.dofe.org

Duke of York’s Cinema (Brighton)

Cinema with four wheelchair spaces, an induction loop, some subtitled (captioned) screenings and autism/disability-friendly (relaxed) screenings once a month. Guide dogs are welcome.

Tel: 0871 902 5747 (box office) or 02072 947908 (accessibility hotline)

Email: enquiries@picturehouses.co.uk
www.picturehouses.com

Early Help (WSCC)

Coordinated assistance for families with children and young people (aged 0-25) with SEND, to ensure that needs are being met and welfare maintained through early intervention. Part of WSCC Children’s Services. Referral via a health visitor, school or local Family Hub, or the Integrated Front Door.

Tel (Integrated Front Door): 01403 229900
www.westsussex.gov.uk/social-care-and-health/social-care-and-health-information-for-professionals/children/early-help/early-help-services

Educational Psychology Service (EPS) (WSCC)

Works with children, young people, parents and schools, using psychology to improve learning and development. It provides advice to the local authority to support assessments of children’s SEND, and supports a range of other WSCC services (e.g. Portage and Mental Health Support Teams (MHSTs) in schools).

Tel: 01903 839308

Email: EPS@westsussex.gov.uk
https://schools.westsussex.gov.uk/Services/3282

Escape Youth Club (Burgess Hill)

Youth Club for young people aged 10-17 to develop social and emotional wellbeing. Term time on Fridays, 7-9pm, Burgess Hill Academy.

Email: info@theescapeyouthclub.com
www.theescapeyouthclub.com
www.facebook.com/escapeyouthclub

Esteem (Shoreham)

Runs a number of inclusive services for young people aged 14-26 including weekly The Drop-In or Crunch Time, where they can socialise with others, structured activities such as mini golf and kayaking, counselling, mentoring, volunteering and walk and talks to boost wellbeing.

Tel: 074970 447333

Email: hello@esteem.org.uk
http://esteem.org.uk

Ethnic Minority and Traveller Achievement Service (WSCC)

Works with schools and families to raise the attainments of children from black, Asian, Roma, traveller and other ethnic minority families.

Black, Asian and ethnic minority service

Tel: 0330 222 2111

Email: emat@westsussex.gov.uk

Traveller service

Tel: 0330 222 2155

Email: tes@westsussex.gov.uk
https://schools.westsussex.gov.uk/Services/3381

Everyman Cinema (Horsham)

Offers some relaxed screenings for people with additional needs including autism and learning disabilities.

Tel: 0872 436 9060
www.everymancinema.com/general-faqs
e-wellbeing (YMCA DownsLink Group)

Digital wellbeing service for young people run by YMCA DownsLink Group. Aims to help all young people access the right support and information around their emotional health and wellbeing. Offers a directory of Sussex organisations supporting young people’s emotional health.

Email: e-wellbeing@ymcadlg.org
https://e-wellbeing.co.uk

Fair Access Team (WSCC)

Provides advice, support and guidance to schools, parents and governors about exclusion processes, and signposts schools when a pupil is at risk of exclusion. Commissions places for pupils permanently excluded. Commissions alternative provision for children unable to attend school due to exclusion or ongoing health needs that impact on their ability to attend school.

Tel: 0330 222 2059

Email: ACDExclusions@westsussex.gov.uk
https://schools.westsussex.gov.uk/Services/6748

Family Hubs (WSCC)

There are 12 Family Hubs across the districts of West Sussex offering a range of support, information and guidance to parents, carers and young people as part of WSCC Early Help. All are open Mon-Fri and offer drop-in access to family advice including childcare, health and SEND concerns. Houses the Find it Out services for young people aged 11-25. Social spaces and free computer access available to parents. Many offer sensory rooms and/or sensory toy libraries.

Tel (via Integrated Front Door): 01403 229900
www.westsussex.gov.uk/familyhubs
www.facebook.com/AdurWorthingFamilyHubs
www.facebook.com/ArunFamilyHubs
www.facebook.com/ChichesterAreaFamilyHub

Family Information Service (FIS) (WSCC)

WSCC service offering up-to-date information to families on activities, services and childcare. Works closely in support of Early Help services. Supports inclusion in Early Years settings.

Tel: 01243 777807

Email: family.info.service@westsussex.gov.uk
www.westsussex.gov.uk/FIS
www.facebook.com/FISWestSussex

Family Support Work

Charity offering support to families in Sussex with children (aged 0-18) who are facing crisis or need help to overcome multiple complex issues. Services include home visits, support groups, drop-ins, play opportunities for children and supported family breaks with community workers.

Tel: 01273 832963

Email: admin@familysupportwork.org.uk
www.familysupportwork.org

Ferring Country Centre (near Worthing)

Day service for adults (18+) with learning disabilities, providing training and work experience in various roles throughout the centre (local authority/privately funded upon referral). Visitor centre (open to all), garden centre, riding school, café with soft play, small animal farm, outdoor play area and nature trail. Riding therapy for anyone aged 4+ with any difficulty or disability.

Tel: 01903 245078

Email: office@ferringcountrycentre.org
www.ferringcountrycentre.org

Finches (Burgess Hill)

Fully adapted Chailey Clinical Services bungalow offering residential respite breaks for children and young people with complex health needs. Full NHS nursing care on site. Referral required from an NHS clinician or the health/local authority lead manager responsible for buying specialist services.

FindItOut

Offers information, advice and support to young people aged 11-25. Centres are located within West Sussex Family Hubs. Use the link below to find your local Family Hub and then click on ‘FindItOut offer’. Support is also available using the online request form on those FindItOut web pages.

Tel: (via Integrated Front Door) 01403 229900
www.westsussex.gov.uk/education-children-and-families/find-a-family-hub

Flip Out (Chichester)

Trampolining and soft play for all ages. Dedicated, discounted weekly SEND sessions. Portable hoist available.

Tel: 01243 256590

Email: chichester@flipout.co.uk
www.flipout.co.uk/locations/chichester

Food Banks

There are numerous food banks and community projects in West Sussex for people who have no other means of assistance in a crisis, as well as organised schemes such as Olio (see below). Contact the West Sussex Community Hub, the Trussell Trust (below) or your local Family Hub. Your local council or Facebook support groups may be able to signpost to other local organisations.

Tel: 0344 477 1171 or 03302 227980
www.advicewestsussex.org.uk/advice/cost-of-living

Olio App

The Olio app allows people to advertise free items (food, toiletries, storage containers etc.) that would otherwise go to waste. There are Olio volunteers who rescue unsold food from local businesses and share it with the community via this app. No referral is needed – simply download the app and search near you.

https://olioapp.com/en

Trussell Trust (food bank network)

Phone to be put in touch with your nearest food bank, or use the search box on the website. It is necessary to be referred with a food bank voucher by a local organisation such as a school, GP or advice agency.

Tel: 01722 580180

Email: enquiries@trusselltrust.org
www.trusselltrust.org

Footloose Dance Group (Crawley)

Dance and movement classes for children and young people aged 14+ with learning disabilities. Weekly at Manor Green School.

Tel: 07912567481 (Sam)

Email: footloosedancecrawley@gmail.com  or samantha.bloom@outlook.com
www.footloose-crawley.co.uk

Gatwick Airport

Offers a range of services for people with disabilities, special needs or reduced mobility: Changing Places toilets; Eagle hoist for assistance boarding the aircraft (must be booked 24 hours before travelling); a private oxygen supply booking service for passengers requiring oxygen therapy abroad; special assistance help points; sunflower lanyards for people with autism or other hidden disabilities who wish to wear one as a sign to staff that they may need extra help or understanding, and a sensory room designed for people with autism, dementia, cognitive impairment or other special needs. NB: if you need help getting to your flight, you should contact your airline at least 48 hours before you fly to book assistance.

Email: hiddendisability@gatwickairport.com
www.gatwickairport.com/at-the-airport/passenger-services/special-assistance

Gig Buddies

Founded by Stay Up Late, this pairs up people aged 18+ with and without learning disabilities and/or autism who have similar interests, so they can go to gigs and other cultural activities together. It also runs Sports Buddies, which pairs up people to exercise and do sports activities together.

Tel: 07783 810036
https://gigbuddies.org.uk

Golden Lion Children’s Trust

Days out for children with special needs and disabilities and disadvantaged young people.

Email: enquiries@glct.org.uk
www.glct.org.uk

Grace Eyre Foundation (18+)

Provides various services designed to help adults with learning disabilities access community opportunities including sports, learning, leisure, supported living and housing.

Tel: 01273 201900

Email: enquiries@grace-eyre.org
www.grace-eyre.org

Guild Care (Worthing) (SB)

Social care charity providing a range of services for children and adults with learning disabilities and complex needs from various centres in Worthing. Offers Short Breaks on weekends and during school holidays for children (aged 5-18) from the Ashdown Centre, plus days out for their siblings in the summer holidays. Day and respite services for adults (18+) are run from their Birkdale and Fitzalan Howard Centres in Worthing (Mon to Fri, 9-4pm), and there’s a social and friendship group for young adults (18-30).

Tel: 01903 528600

Email: enquiry@guildcare.org or via online forms
www.guildcare.org/Pages/Category/learning-disabilities

Gym Joeys (Bognor Regis)

Gymnastics and play sessions for children aged one to five years, with and without SEND.

Tel: 07799 836341

Email: regisgymnastics@gmail.com
www.gymjoeys.com

Head2Head Theatre

Interactive, multi-sensory, ‘walkabout’ pantomimes and performances for children with SEND aged two and up.

Tel: 01883 725264

Email: reception@h2hsensorytheatre.com
www.h2hsensorytheatre.com

Health Visiting Service (Healthy Child Programme)

Provides routine health and development reviews for children and families, as well as additional support when needed as part of the Healthy Child Programme, from pregnancy onwards. Focuses on children aged 0-5 but will signpost to correct services for older children. Can help with various issues including feeding and nutrition, behaviour and sleep management, parenting issues, emotional health and child protection issues. Referrals via professionals and/or parent-carers.

Tel: 01273 242004

Text: (Parentline advice service for under-fives) 07312 277163

Email: sc-tr.wsxhcpduty@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/health-visiting-service

Healthwatch West Sussex

Independent organisation giving people in West Sussex support around health and care services, and opportunities to provide feedback on them. See also the Independent Health Complaints Advocacy Service (IHCAS) provided by Healthwatch.

Tel: 0300 012 0122

Email: helpdesk@healthwatchwestsussex.co.uk
www.healthwatchwestsussex.co.uk

Healthy Child Programme

Support and services to keep children healthy and well from preconception through to adulthood. Coordinated in West Sussex by Sussex Community NHS Foundation Trust via the Health Visiting Service (0-5) and School Nursing Service (5-19).

HFT

Support for people with many different types of learning disability. Experienced in supporting people with complex needs. Offer includes supported living, residential care, day opportunities and in-home care.

Tel: 01243 542714

Email: HftSussex@hft.org.uk
www.hft.org.uk/about-us/locations/east/hft-sussex

Hidden Disabilities: Sunflower lanyard scheme

Businesses taking part in this scheme offer sunflower lanyards to people with hidden disabilities including ADHD, autism and dementia. Staff are trained to offer wearers extra assistance. For more information, search online for ‘hidden disability lanyard’.

https://hiddendisabilitiesstore.com

Holiday Activities and Food (HAF) programme (WSCC)

The HAF programme is fully funded by the Department for Education and offers children who are entitled to benefits-related free school meals an opportunity to attend participating holiday activity clubs and have a free meal. Benefits-related free school meals are available to pupils if their parents are in receipt of one of the qualifying benefits and have a claim verified by West Sussex County Council. Eligible children can attend their chosen HAF provision for a maximum of four days per week for one week at Easter, four weeks during the summer and one week at Christmas, but you must book in advance.

Email: haf@westsussex.gov.uk
www.westsussex.gov.uk/education-children-and-families/support-for-families/holiday-activities-and-food-programme

Home-Start

Supports families of children under five who may be dealing with issues such as SEND, postnatal depression, isolation and health problems. Services include home visiting, groups and support so families can access other services.

Arun, Worthing and Adur

Tel: 01903 953799

Email: admin@home-startawa.org.uk
https://home-startawa.org.uk

Chichester

Tel: 01243 773477

Email: admin@home-startchichester.org.uk
https://home-startchichester.org.uk

Crawley, Horsham and Mid Sussex

Tel: 01293 416327

Email: info@homestartchams.org.uk
https://homestartchams.org.uk

HOPE Charity Project (Southwater, Horsham)

Supports young people and families who are experiencing emotional/mental health issues. Services include one-to-one and group/family counselling, animal therapy and creative therapies.

Email: info@hopecharityproject.org
www.hopecharityproject.org

Horsham District Junior Disability Swimming Programme

Provides a range of sessions across the district at Billingshurst and Steyning Leisure Centres, the Pavilions in the Park in Horsham and Bluecoat Sports Centre, Christ’s Hospital. Call for current information.

Tel: 07764 146339 (Paul Taylor)

Email: paul.taylor@horsham.gov.uk
www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities – click on ‘inclusive swimming lessons’.

Horsham District Council Reaching Higher Project (SB)

Weekly term-time after-school and weekend short breaks, sports and arts activities for young people with SEND aged 5-18 and their siblings. Activities include athletics, cricket, digital video production, DJing, inclusive football, karaoke and rebound therapy. Offer varies seasonally (and may also include dance, wheelchair basketball and table tennis).

Tel: 07764 146339

Email: paul.taylor@horsham.gov.uk
www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/reaching-higher-project

Hospitals with A&E departments

East Surrey Hospital

Canada Avenue,

Redhill, Surrey, RH1 5RH

Princess Royal Hospital

Lewes Road, Haywards Heath,
RH16 4EX

Royal Sussex County Hospital

Eastern Road, Brighton, BN2 5BE

St Richard’s Hospital

Spitalfield Lane, Chichester,
PO19 6SE

Worthing Hospital

Lyndhurst Rd, Worthing, BN11 2DH

Household Support Fund

Crisis and preventative support to vulnerable households

C/o West Sussex Community Hub

Tel: 03302227980

Web: www.westsussex.gov.uk/leisure-recreation-and-community/household-support-fund

Impact Initiatives

Services in West Sussex include: Money First Advocacy for adults (18+) with a learning disability, acquired brain injury, physical or sensory impairment and autistic people; CCP advocacy for parents with a learning disability who are in, or at risk of being in, childcare proceedings; and the Workability employment support scheme for people with disabilities and their carers.

Tel: 01903 730044

Email: advocacy@impact-initiatives.org.uk
or workability@impact-initiatives.org.uk

Independent Health Complaints Advocacy Service (IHCAS)

Healthwatch’s complaints advocacy service covering West Sussex, which can support people to make a complaint to the NHS.

Tel: 0300 012 0122

Email: helpdesk@healthwatchwestsussex.co.uk
www.healthwatchwestsussex.co.uk/help-making-complaint

Independent Lives

Information, care and support services designed to enable people with care needs to be independent. Direct Payment/personal budget support and payroll service.

Tel: 01903 219482

Email: info@independentlives.org
www.independentlives.org

Integrated Front Door (IFD) (WSCC Children’s Services)

Receives all safeguarding enquiries and referrals for children’s social care and Early Help services, including children with disabilities. Calls are directed to the right service for support in line with needs as quickly as possible. For a child at immediate risk of harm, call 999. For non-urgent requests, use the online IFD children’s portal on the website below. For over-18s, see Adults’ CarePoint.

Tel: 01403 229900

Out of hours: 0330 222 6664
www.westsussex.gov.uk/education-children-and-families/keeping-children-safe/request-support-or-raise-a-concern-about-a-child

Intensive Planning Team (IPT) (WSCC)

Works with identified children and young people with SEND who are at high risk of their education placement breaking down and/or at risk of needing an independent, residential school away from their family and community. Referrals are through professionals only.

Email: intensiveplanningteam@westsussex.gov.uk
www-admin.westsussex.gov.uk/local-offer/services/details/api/type/localoffers/view/intensive-planning-team

JubyLee Bakes

JubyLee Bakes can provide work-based training in baking and food hygiene for young people with learning disabilities and other special needs. There is also a chance to develop other skills, including packaging goods and selling bakes/handling money at events. Young people must have a personal assistant (PA) or carer who can actively support them during baking and sales sessions (it must be the same PA or carer each week).

Tel: 01293 526509 or 07709 275278
www.jubyleebakes.org.uk

K2 Leisure Centre, Crawley (Everyone Active)

Recreational play, sports activities and swimming lessons for all, including those with special needs/disabilities.

Tel: 01293 585300
www.everyoneactive.com/centre/k2-crawley

Kangaroos (Haywards Heath) (SB)

After-school clubs, weekend and holiday playschemes for children (aged 6+) and young adults with SEND, tailored for different ages, abilities and levels of need. Runs Saturday ‘stay and play’ sessions for children under five. Family and sibling support programmes are now on offer too.
Tel: 01444 459108
Email: info@kangaroos.org.uk
www.kangaroos.org.uk

Learning and Behaviour Advisory Team (LBAT) (WSCC)

Advisory teachers offering advice and consultation to schools. Aim to improve educational outcomes and emotional wellbeing by working with schools around learning and/or behaviour difficulties affecting a pupil’s progress. Referral via school only.

Email: schoolsABC@westsussex.gov.uk
https://schools.westsussex.gov.uk/Page/18818

Learning Assessment and Neurocare Centre (LANC)

Works with children, young people and adults with complex neurodevelopmental difficulties.

Tel: 01403 240002 or 01403 260900

Email: info@lanc.uk.com
www.lanc.org.uk

Learning Disabilities Health Facilitation Team (NHS)

Nursing team that supports people aged 14+ with diagnosed learning disabilities with accessing health care, such as a hospital visit or dental care. Accepts referrals from parents and professionals, but those accessing the service must be on the learning disabilities register at their GP surgery. Your child should be automatically added to the register when they get a diagnosis, but you may want to check with your GP to ensure that they have been added.

Tel: 01403 620438

Email: sc-tr.ldhf-horsham@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/learning-disabilities-health-facilitation-team

Level Water

Affordable one-to-one swimming lessons for children aged 4-11 who cannot swim ten metres and have a physical disability or sight/visual impairment. They do not currently support children with substantial learning, social or behavioural difficulties. Please apply for lessons via their website.

Email: contact@levelwater.org
www.levelwater.org

Libraries – see West Sussex Library Service

Lifelong Services

Works with children and adults who have a lifelong disability acquired before the age of 25 (e.g. a learning disability, autism, physical or sensory disability or acquired brain injury) and require social care support. The Lifelong Service works in partnership with the disabled person and their family to offer early intervention; build on an individual’s strengths in order to help them to develop skills and independence; build links with the individual’s community; promote and maintain safety and good health; and facilitate employment for young people and adults. You can contact the Lifelong Service via the Integrated Front Door (IFD).

Email: lifelongservices@westsussex.gov.uk

Lizzie’s Craft Club (Sidlesham, Chichester)

Craft club for children (aged 4-11) of all abilities and their siblings in a custom-built, wheelchair accessible art studio.

Tel: 07900 631527

Email: lizzie@lizziebaily.com
www.lizziebaily.com

Lodge Hill Centre (near Pulborough) (SB)

Accessible outdoor education centre offering a vast range of activities for children and young people. Provides family activity days under Short Breaks and a range of other inclusive activities, alternative provision and holiday clubs. Also has accessible accommodation available for holidays at the centre.

Tel: 01798 831411
www.lodgehill.org.uk
www.facebook.com/lodgehillcentre

Look Sussex

Provides events information and support to the families of children and young people with a visual impairment in East and West Sussex.

Email: info@looksussex.org.uk
https://looksussex.org.uk

Mental Health Support Teams (MHSTs) in schools (Thought-Full)

An integrated service delivering mental health support to 50% of schools in West Sussex. Offers advice to schools about supporting wellbeing across the setting and offers one-to-one interventions for specific pupils upon referral by the school’s Senior Mental Health Lead (SMHL).

Email: thought-full@westsussex.gov.uk
https://schools.westsussex.gov.uk/Services/6073

Mid Sussex Marlins

Swimming club with two groups for adults and children aged 7+ with SEND: Dolphins in Burgess Hill and Starfish in Haywards Heath.

Email: info@midussexmarlins.org
www.midsussexmarlins.org/disabilities

Minor injuries

Units for the assessment and treatment of minor injuries and illnesses. Check opening times on the website. For very young children and serious issues, go to A&E.

www.uhsussex.nhs.uk/hospitals/minor-injuries

Bognor REGIS War Memorial Hospital

Shripney Road, Bognor Regis, PO22 9PP

Horsham Hospital

Hurst Road, Horsham, RH12 2DR

Queen Victoria Hospital

Holtye Road, East Grinstead, RH19 3DZ

The Park Surgery

St Floras Rd, Littlehampton, BN17 6BF

Multi-Agency Safeguarding Hub (MASH)

Now known as Integrated Front Door (IFD).

MXT Swimming School

Swimming teachers experienced in working with children with autism, muscular dystrophy, ADHD, dysphasia, dyspraxia and cerebral palsy. SEND lessons are taught in Storrington and Steyning.

Tel: 01903 202700 or 07903 731370

Email: mxtswim@gmail.com
www.mxtswimschool.com

NHS Sussex Integrated Care Board (Sussex Health and Care)

Agrees the strategic priorities and resource allocation for all NHS organisations in Sussex. Has taken on the commissioning functions previously carried out by Clinical Commissioning Groups (CCGs).

Tel: 0300 140 9854

Email: sxicb.contactus@nhs.net
www.sussex.ics.nhs.uk/nhs-sussex

Occupational Therapy (OT)

Helps children and young people under the age of 18 (19 if in special education) to achieve or maintain their independence at home, nursery or school. Families and professionals can access advice packs and video series via the web page without the need for a referral. Where the level of help and support is higher, an initial referral is needed from a health or education professional. Parents and professionals can re-refer any child who has been seen within the last 12 months by an OT in West Sussex.

Chichester

Tel: 01243 793 641

Email: SC-TR.PaedOTChichester@nhs.net

Crawley and Horsham

Tel: 01293 301010

Email: SC-TR.ChildrensOTNorth@nhs.net

Haywards Heath

Tel: 01444 414100

Email: SC-TR.ChildrensOTMidSussex@nhs.net

Worthing

Tel: 01903 286 710

Email: SC-TR.PaedOTWorthing@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/occupational-therapy-for-children

Assessments for adults can be requested through your GP or the Adults’ CarePoint.

Out of Bounds (Angmering)

Indoor and outdoor activity centre that holds special open events for individuals of all ages with SEND. These events are inclusive for families, siblings and carers, who are encouraged to participate and enjoy the activities together, but they are chargeable.

https://out-of-bounds.co.uk

Out-of-Hours GP service

NHS non-emergency number, free from landline or mobile.

Tel: 111

Outreach 3 Way (age 16+)

Provides day services, sheltered employment and social clubs for people with learning disabilities and autism.

Tel: 0300 303 9032

Email: hello@outreach3way.org
www.dimensions-uk.org/service/south/outreach-3-way

Parents and Carers Support Organisation (PACSO) (Chichester) (SB)

Respite and fun events for children and young people with SEND (aged 0-25) and their families in West Sussex via after-school clubs, weekend activities and holiday playschemes.

Tel: 01243 533353

Email: admin@pacso.org.uk
www.pacso.org.uk

Patient Advice and Liaison Services (PALS)

Information and advice services (including complaints) for NHS patients. Hospitals and NHS services are listed by NHS trusts covering West Sussex within the Sussex Health and Care Integrated Care System.

UNIVERSITY HOSPITALS SUSSEX NHS FOUNDATION TRUST
www.uhsussex.nhs.uk/patients-and-visitors/support/pals

Princess Royal Hospital, Haywards Heath

Tel: 01444 448678

Email: uhsussex.pals@nhs.net

St Richard’s Hospital, Chichester

Tel: 01243 831822

Email: uhsussex.palschichester@nhs.net

Royal Sussex County Hospital, Sussex Eye Hospital and Royal Alexandra Children’s Hospital, Brighton

Tel: 01273 664511 or 01273 664973

Email: uhsussex.pals@nhs.net

Worthing and Southlands Hospital

Tel: 01903 285032

Email: uhsussex.palsworthing@nhs.net

QUEEN VICTORIA HOSPITAL NHS FOUNDATION TRUST

Queen Victoria Hospital

Email: qvh.pals@nhs.net
www.qvh.nhs.uk/for-patients/pals-and-support

SURREY AND SUSSEX HEALTHCARE NHS TRUST

Covering Crawley Hospital, East Surrey Hospital and Horsham Hospital

Tel: 01737 231958
Email: sash.pals@nhs.net
www.surreyandsussex.nhs.uk/find-contact-us/share-your-feedback/pals

Sussex Partnership NHS Foundation Trust

Tel: 0300 304 2198

Email: pals@spft.nhs.uk
www.sussexpartnership.nhs.uk/about-us/contact-us/feedback-advice-and-complaints

SUSSEX Community NHS Foundation Trust

Tel: 01273 242292

Email: sc-tr.PALS@nhs.net
www.sussexcommunity.nhs.uk/contact-us/tell-us-what-matters-to-you/patient-advice-and-liaison-service-pals-and-complaints

Pathfinder West Sussex

Adults’ single point of access to local mental health support, information and signposting. An alliance of organisations managed by Sussex Partnership NHS Foundation Trust provides links to adult clinical assessment and treatment services if needed, or support to step down from clinical services. Go to ‘find local support’ on the website and enter your postcode.

www.pathfinderwestsussex.org.uk

PA Services for You

Providing specialist support for people with a range of neurological disorders and complex needs to enjoy a happy and valuable life experience, supporting clients based within one hour of Crawley.

Tel: 01293 425279

Email: info@timeforyoupaservices.co.uk
www.timeforyoupaservices.co.uk

Pegasus Card scheme (Sussex Police)

Card for people with disabilities or communication difficulties to alert emergency services that the holder needs additional help.

www.sussex.police.uk/contact/af/contact-us/us/contact-us/sspegasus-scheme/pegasus-scheme

The Point (previously Scope West Sussex)

Independent charity running a day centre for adults with significant physical disabilities, with a focus on leisure activities and new experiences.

Tel: 01243 775330

Email: info@thepoint-chichester.org
https://thepoint-chichester.org

Portage – see West Sussex Portage Service

Pupil Entitlement (WSCC)

Works with schools and families to ensure that children and young people have access to their entitlement to a suitable education, whether they are registered at a school, home educated or in need of provision.

Absence and Fixed Penalty Notices

Tel: 0330 222 8200

Email: PEI@westsussex.gov.uk (absence) or FPN@westussex.gov.uk (Fixed Penalty Notices)

Elective Home Education Advice

Tel: 03302 223300

Email: EHE@westsussex.gov.uk
https://schools.westsussex.gov.uk/Services/3328

Rainbow Trust

Provides emotional and practical support to families of children with life-threatening or life-limiting conditions.

Tel: 01372 363438

Email: enquiries@rainbowtrust.org.uk
www.rainbowtrust.org.uk

Reaching Families

Information, training, benefits advice and peer support for parents and families of children and young people with SEND in West Sussex.

Tel: 01903 366360

Email: admin@reachingfamilies.org.uk
www.reachingfamilies.org.uk

Ready and Able Sports Club (Horsham)

Sports and social club for people with disabilities (aged 18+) and their families.

Tel: 07764 146339

Email: paul.taylor@horsham.gov.uk
www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/ready-and-able-disability-sports-club-for-adults

Regis Gymnastics (Bognor Regis)

Inclusive and one-to-one gymnastics lessons and rebound therapy sessions for children and adults with additional needs.

Tel: 07799 836341

Email: regisgymnastics@gmail.com
www.regisgymnastics.com/Classes/disability.html

Rehabilitation Engineering Service (Chailey Clinical Services)

Provides rehabilitation engineering services and assistive technology to children and young people with complex physical disabilities, to maximise their independence and safety.

Tel: 01825 722112

Email: sc-tr.chaileyreferrals@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/rehabilitation-engineering-service

Relate (West Sussex Centre)

Counselling, mediation and therapy for couples and families, online and face-to-face. West Sussex head office based in Crawley, with satellite offices in Horsham and Chichester.

Tel: 01293 657055

Email: reception@relatesussex.org
www.relate.org.uk/find-your-online-centre

The Sand Project

Offers practical learning experiences in real life settings to young people aged 16-25 with EHC Plans. Trainees learn how to harness their neurodivergent assets while preparing for their adult lives, with the goal of meaningful paid work.

www.thesandproject.co.uk

School Nursing Service (Healthy Child Programme)

Offers routine health and development reviews to children and families, as well as additional support when needed (with a focus on school-age children). Can help with nutrition, behaviour, parenting and emotional health. Signposts to other specialist support when needed, e.g. continence services. Referrals via professionals and/or parent-carers.

Tel: 0300 303 1137

Text: (Parentline advice service, ages 5-19) 07312 277011

Email: sc-tr.hcpwestsussexschoolnurses@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/school-nursing-service

SENAT (Special Educational Needs Assessment Team) (WSCC)

Deals with requests for education, health and care needs assessments, and oversees the writing and review of Education, Health and Care Plans (EHC Plans). For more details, go to the website below and search for ‘SENAT’.

SENAT North

Covers the northern part of the county including Burgess Hill, Crawley, Cuckfield, East Grinstead, Haywards Heath and Horsham.

Tel: 0330 222 2722

Email: senat.north@westsussex.gov.uk

SENAT South

Covers the southern part of the county, including Angmering, Bognor Regis, Chichester, Hove, Midhurst, Littlehampton, Petworth, Portslade, Shoreham, Steyning and Worthing.

Tel: 0330 222 3120

Email: senat.south@westsussex.gov.uk
www.westsussex.gov.uk

SEND Youth Voice

Gives young people aged 11-25 with SEND the chance to share their views and help to shape future services.

Email: voice@westsussex.gov.uk
https://yourvoice.westsussex.gov.uk/young-voices

SENDIAS – see West Sussex SEND Information, Advice and Support (SENDIAS)

Sensory Support Team (SST) (WSCC)

Provides services to children and young people aged 0-25 who have hearing, visual or multi-sensory impairment. Go to the website below and search for ‘Sensory Support Team’.

Tel: 01903 270430

Email: sensory.support@westsussex.gov.uk
www.westsussex.gov.uk

Short Breaks for Disabled Children

Holiday clubs, after-school clubs, buddy schemes and short breaks at home or in the community. Available for children and young people up to the age of 18 who live in West Sussex and receive either the middle or high care component of DLA or the standard or enhanced rate of PIP, or have equivalent needs. Go to the website and search for ‘short breaks for disabled children’.

Tel: 0330 222 2562

Email: sendcommissioningteam@westsussex.gov.uk
www.westsussex.gov.uk

Signposts (Mid Sussex) Ltd (Burgess Hill)

Information, advice, support and activities for adults with lifelong disabilities and their families, friends, carers and professionals, in Mid Sussex and surrounding areas.

Tel: 01444 616232

Email: info@signpostsmidsussex.org.uk
www.signpostsmidsussex.org.uk

Social prescribing

Connects people to activities, groups and services in their community to meet the practical, social and emotional needs affecting health and wellbeing. Ask for a referral/details at your GP surgery, or search for ‘social prescribing’ on your district council’s website. Most providers accept self-referrals. A map below lists most in the county.

www.sussex.ics.nhs.uk/social-prescribing-works
https://nasp.communitymaps.org.uk/project/south-east-social-prescribing

Southdown

Specialist care, support and housing for clients and tenants with mental health difficulties or learning disabilities, as well as people who are or have been homeless. Also provides the Work and Wellbeing project, offering one-to-one support for people with mental health challenges to find work and ongoing support in the workplace. Referrals must come from NHS Mental Health Teams.

www.southdown.org

Special Care Dental Service (Sussex Community NHS Foundation Trust)

Provides specialist community dental treatment to children and adults with additional needs who are unable to have treatment at a general dental practice. Referral by health care professional only.

www.sussexcommunity.nhs.uk/patients-and-visitors/services/special-care-dental-service

Special Families East Grinsted

Parent-carer-led charity working to enrich the lives of families with children who have disabilities or additional needs, in and around East Grinstead. Runs coffee mornings, social evenings, workshops and fun events.

Tel: 07928 135453

Email: admin@specialfamilieseg.org
www.specialfamilieseg.org

Speech and Language Therapy (SALT) Service (Sussex Community NHS Foundation Trust)

Provides support to children and young people aged 0-19 with speech, language and communication difficulties and/or swallowing difficulties. Works in health clinics, Child Development Centres, schools, hospitals and preschool settings. Accepts referrals from professionals and parents in three areas of West Sussex:

WEST SUSSEX WEST (Bognor Regis, Chichester and Midhurst)

Tel: 01273 696011 (ext. 5108)

Email: sc-tr.chichestersalt@nhs.net

WEST SUSSEX NORTH (Crawley, Horsham and Mid Sussex)

Tel: 01403 620445

Email: sc-tr.saltcentraladmin@nhs.net

WEST SUSSEX SOUTH (Shoreham, Worthing and Littlehampton)

Tel: 01273 265953

Email: sc-tr.worthingsalt@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/childrens-speech-and-language-therapy-service

SPIN (Single Parent Information Network)

Voluntary organisation providing information and support to single parents in Brighton, Hove and Sussex. Also has a Facebook group.

Email: joannagurr@spinbrighton.uk
www.spinbrighton.uk

The Springboard Project (SB)

Inclusive stay and play centre in Horsham for under-10s with adapted equipment and  SEND-only sessions. SEND services for children and young people/adults (aged 6-30) include youth clubs and holiday activities (including short breaks), transition support, volunteering, employability and life skills in Horsham, Crawley and Worthing. Bursaries available.

Tel: 01403 218888

Email: hello@springboardproject.com
www.springboardsupport.org

Stay Up Late (18+)

Charity promoting full and active social lives for people with learning disabilities aged 18+. Arranges for buddies through Gig Buddies and Sports Buddies to accompany young people to gigs, cultural and leisure activities. See the Gig Buddies website for more.

Tel: 07783 810036
www.gigbuddies.org.uk

Sunbeam Swimming Club (Horsham)

Swimming club for children (8+) and adults with a disability or condition of any kind, which meets at Pavilions in the Park, Horsham on Saturdays. Prior to attending for the first time, please complete a membership form (available from the website).

Email: info@sunbeamswimming.co.uk
https://sunbeamswimming.co.uk
www.facebook.com/SunbeamSC
www.sussexab.org.uk

Super Siblings

Helping siblings of children with additional needs feel safe, have fun and simply be kids, offering fortnightly sessions for children to have fun and socialise with others in similar circumstances, as well as family fun days and other activities.

Tel: 07503 931 691

Email: info@supersiblings.org
www.supersiblings.org

Supported Employment West Sussex

Employment support for individuals in West Sussex with lifelong disabilities, physical and sensory issues or acquired brain injury and their carers. Offering bespoke support to enable and empower individuals to access and sustain paid employment in their local communities. If you have a learning disability and/or autism, please contact Work Aid at the Aldingbourne Trust:

Tel: 01243 546035

Email: workaid@aldingbourne.org

If you have a physical disability, sensory impairment and/or acquired brain injury, or are a carer, please contact Workability:
Tel: 01903 730044

Email: workability@impact-initiatives.org.uk

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH)

Advice, support, groups, social events and residential breaks for people with spina bifida and/or hydrocephalus and their families.

Tel: 01825 873045

Email: office@sasbah.org.uk
www.sasbah.org.uk

Sussex Child and Adolescent Mental Health Services (CAMHS)

Provider of specialist mental health services across Sussex for children under 18 with emotional, behavioural or mental health conditions. Referrals via professionals in health, social care or education. Self-referrals to West Sussex Single Point of Access (SPoA) from parents and children may be directed to Sussex CAMHS when appropriate. Education and advice about mental health issues available on their website. CAMHS Participation service facilitates user engagement and understanding. Also houses the Children and Young People’s Enhanced Support Service (CYPRESS).

Community teams in West Sussex

Chichester: 01243 813405

Horsham: 01403 223340

Mid Sussex: 01444 472670

Worthing: 01903 286754
www.sussexcamhs.nhs.uk

Sussex Community NHS Foundation Trust

Main provider of community NHS health and care in Sussex. Its website lists all services provided with contact and referral details.

www.sussexcommunity.nhs.uk

Sussex Cricket

The club’s charitable foundation supports a range of inclusive and disability cricket sessions for children and adults in various locations across East and West Sussex. Go to ‘Foundation’ on the website and then see ‘community cricket’.

Tel: 01273 827 100

Email: info@sussexcricket.co.uk
https://sussexcricket.co.uk

Sussex Health and Care Integrated Care System

The Integrated Care System (ICS) covers all of Sussex, bringing together health and care organisations from the local area to work together more closely. Incorporates NHS Sussex Integrated Care Board and the Sussex Health and Care Assembly. Website provides useful information about the structure of health and care services in Sussex.

www.sussex.ics.nhs.uk

Sussex Mental Healthline

‘Crisis line’ operating 24 hours, seven days a week, with support, advice, information and signposting for anyone (including children and young people) experiencing difficulties with their mental health, or that of a relative or friend.

Tel: 111 and select the ‘mental health’ option
www.sussexpartnership.nhs.uk/your-mental-health/getting-help/sussex-mental-health-crisis-line

Sussex Partnership NHS Foundation Trust

Main provider of mental health, learning disability and neurodevelopmental services to children, young people and adults across Sussex. Its website lists all services provided with contact and referral details.

www.sussexcommunity.nhs.uk

Sussex Sailability

Sailing opportunities for people aged 14+ with a wide range of physical, sensory, learning and other disabilities around the Sussex coast (Shoreham-based).

Email: sussexsailability@gmail.com
https://sussexsailability.org

Sussex Snowdrop Trust

Support and care at home for children in and around the Chichester area with life-threatening or terminal conditions and their families.

Tel: 01243 572433

Email: office@snowdroptrust.com
www.thesussexsnowdroptrust.com

Sussex Super 1s

Super 1s disability cricket activity regularly takes place across Sussex. All sessions are free, and all disabilities are welcome. Sessions in Arundel, Brighton (including visually impaired sessions), Crawley, Eastbourne, Hastings, Haywards Heath, Horsham and Hove.

Email: tom.belcher@sussexcricket.co.uk
www.lordstaverners.org/programme-information/sussex-super-1s

The Sylvia Beaufoy Centre (Petworth)

Youth club offering open-access positive activities for young people aged 9-19 during the week and in school holidays. Runs a range of additional activities including DofE groups and a Greenpower Electric Car Project, cooking, relaxation and craft sessions. Booking is required for some groups.

Tel: 01798 344880

Email: enquiries@sylviabeaufoy.org
https://sylviabeaufoy.org

Tadpoles Swimming Club (East Grinstead)

Swimming and water therapy club for people of all ages with disabilities and additional needs.

Tel: 07849 956925 or 07921 556540

Email: thetadpoleseg@gmail.com
www.tadpoles.info

Thought-Full – see Mental Health Support Teams (MHSTs) in schools

Tools for Schools (Local Offer linked)

Resources and information to support the inclusion of all West Sussex children and young people in early years, schools, post-16 and other education settings.

Email: toolsforschools@westsussex.gov.uk
www.westsussex.gov.uk/tools-for-schools

Tu Vida West Sussex

Provider of emergency respite care for adults (18+) funded by WSCC. Also able to provide self-funded respite services at home or in the community for children (0-18) and adults (18+).

Tel: 01903 790270

Email: westsussex@tuvida.org
www.tuvida.org/carer-respite-west-sussex

Umbrellas Parent Support Groups

Support for parents and carers of children and young people with special needs and disabilities. Groups are run by Reaching Families.

Tel: 01903 366360 or 07951 794734 (Hannah)

Email: hannah@reachingfamilies.org.uk
www.reachingfamilies.org.uk/umbrellas

Urgent Treatment Centres

Treat most injuries or illnesses that are urgent but not life threatening.

Crawley Urgent Treatment Centre at Crawley Hospital

West Green Drive, Crawley, RH11 7DH

St Richard’s Urgent Treatment Centre

Spitalfield Lane, Chichester, PO19 6SE

Worthing Urgent Treatment Centre

Lyndhurst Road, Worthing, BN11 2DH

Wadurs Swimming Pool

Swimming lessons (one-to-one if required) for children and adults with disabilities in Shoreham.

Tel: 01273 238000
www.southdownsleisure.co.uk/wadurs-swimming-pool

Wasps Disabled Archery Club (Lewes)

Archery club for people across Sussex of all ages and abilities (8+).

Tel: 07963 652344 (Phil Reay)

Email: archerphil360@gmail.com
www.facebook.com/groups/729156831655378

WBC Cares UK – Adaptive boxing programme

Offers one-to-one adaptive boxing sessions, and group classes for a range of different impairment groups, adapted to suit the needs of individuals within a group environment. There is a pathway from inclusive sessions through to elite level wheelchair-based training sessions and potential competition.

Location: Brighton and Hove Boxing Gym, Kings Esplanade, Hove, BN3 2WW

Email: info@adaptiveboxing.org
www.adaptiveboxing.org

Wellspring West Sussex

Provides information, services and resources to children and young people with disabilities and their families.

Tel: 07742 408868

Email: lizzie@wellspringwestsussex.org.uk
info@wellspringwestsussex.org.uk
www.wellspringwestsussex.org.uk

Westgate Leisure Centre (Chichester)

Various sports and leisure activities such as inclusive swimming (one-to-one if required), gymnastics and trampolining for children (aged 5+). Swimming pool hoist available.

Tel: 01243 785651
www.everyoneactive.com/centre/westgate-leisure-centre

West Sussex ADHD Support

A parent-led volunteer group supporting carers (18+) of those with ADHD in West Sussex. Two Facebook groups run for Crawley and Worthing. The Worthing group also organises face-to-face support groups. Join on Facebook to make contact.

www.facebook.com/groups/CrawleyADHD
www.facebook.com/groups/worthingADHD

West Sussex Connect to Support (WSCC)

Information and advice to help with independence and wellbeing. Links to services, products, groups and activities in West Sussex.

www.westsussexconnecttosupport.org

West Sussex County Council (WSCC)

Complaints and comments

Tel: 01243 777100 (Ask for the customer relations team)

Email: feedback@westsussex.gov.uk

Disabled Parking (Blue BadgeS)

01243 777653

Family Information service

01243 777807

General Enquiries

01243 777100

Textphone: 18001 01243 777100

Pupil Admissions offices

0333 014 2903
www.westsussex.gov.uk

West Sussex Family Learning

Part of adult learning at WSCC, this team offers a range of engaging, fully funded courses designed to help families learn, grow and have fun together. Courses offered include: Tummy Time play; Communication Club – designed to empower parents and carers of children with speech and communication challenges and delays by offering practical, hands-on ideas to support early language development; Family Fun Club; Nature Explorers and more.

www.westsussex.gov.uk/education-children-and-families/adult-learning-service/family-learning

West Sussex Library Service

Runs libraries in 36 towns/villages across West Sussex with free access to a range of books, online resources and the internet with a West Sussex library card. Searchable library catalogue where books can be ordered for delivery to your local library. Provides wellbeing resources and runs fun activities and events. Offers a Library Access for All service to cater for those with a range of disabilities. For children and young people under 25 with SEND, offers specialist books and resources and runs the West Sussex Disability Register.

Tel: 01243 642111

Email: county.libraries@westsussex.gov.uk
https://arena.westsussex.gov.uk/welcome – click on ‘our libraries’

West Sussex Local Offer (WSCC)

Local authority website providing information for West Sussex families who have children aged 0-25 with SEND.

Tel: 0330 222 5677

Email: localoffer@westsussex.gov.uk
www.westsussex.gov.uk/local-offer
www.facebook.com/westsussex.localoffer

West Sussex Mind

An independent local charity offering mental health services and support. Provides social prescribing for children and young people (aged 8-17) from GP practices in some areas, as well as mental health support for 16-25-year-olds. Peer support and free or low-cost e-learning and courses for parent-carers are provided under their Parenting Support Service.

Tel (Help point): 0300 303 5652

Email: helppoint@westsussexmind.org
www.westsussexmind.org

West Sussex Parent Carer Forum (WSPCF)

For parent-carers of children and young people with SEND aged up to 25. Represents parent-carer views to organisations and professional bodies in West Sussex. Empowers parent-carers to participate in shaping services via information, events and training.

Tel: 07341 183449

Email: office@wspcf.org.uk
www.wspcf.org.uk

West Sussex Portage Service

A home-visiting educational service for very young children with significant support needs. Referrals can be made by parents or anyone with parental consent.

Crawley and East Grinstead: 01293 572480

Chichester and Horsham: 01243 536182

Mid Sussex: 01444 243150

Worthing: 01903 242558

Email: cypsPortagechichester@westsussex.gov.uk
www.portage.org.uk/west-sussex-portage-service
www.westsussex.gov.uk/local-offer/services/details/api/type/localoffers/view/portage-service-west-sussex-autism-inclusion

West Sussex SEND Information, Advice and Support (SENDIAS)

Statutory service providing impartial information, advice and support to parent-carers of children with SEND and young people with SEND in West Sussex.

Tel: 0330 222 8555

Email: send.ias@westsussex.gov.uk (for parent carers)

Or cyp.sendias@westsussex.gov.uk (for children and young people)

www.westsussexsendias.org
www.facebook.com/WSSENDIAS

West Sussex Single Point of Access (SPoA)

A dedicated route to emotional wellbeing and mental health support for 4-17-year-olds. Anyone can refer to SPoA including children and parent-carers. Referrals are directed to the most appropriate help from Youth Emotional Support, YMCA Dialogue or Sussex Child and Adolescent Mental Health Services (CAMHS). Referral via the online e-wellbeing portal below is preferred.

Tel: 0300 304 0462

Email: WestSussexSPOA@spft.nhs.uk
https://e-wellbeing.co.uk/support

West Sussex Talking Therapies

Free, confidential NHS service offering a range of talking therapies for adults (18+) experiencing anxiety or depression who have a GP in West Sussex. Counselling, CBT, self-guided support or group therapy available. Special support for those experiencing long-term health conditions such as IBS, diabetes, asthma or musculoskeletal (MSK) conditions. Referral via GP or self-referral via website (below) or phone. Contact the team nearest to your GP surgery.

Tel (South Team): 01903 703540

(West Team): 01273 265967

(North Team): 01403 620434

(Long-Term Health Conditions Team): 01273 666480
https://westsussextalkingtherapies.nhs.uk

West Sussex Wellbeing (WSCC)

County-wide health improvement programme. Free, evidence-based support and advice for adults who live or work in West Sussex. Covers physical and emotional health aspects. See website for online advice and details of your local wellbeing hub, or to make an appointment with a wellbeing adviser. Professional or self-referral via your local hub.

www.westsussexwellbeing.org.uk

West Sussex Young Carers (WSCC)

Service run by WSCC to support children and young people under 18 who look after a family member who is sick, disabled, has special educational needs or mental health problems or is misusing drugs or alcohol. Referrals accepted from parents or professionals (with permission from the family). See website for full eligibility criteria for ongoing support.

Tel: 01903 270300

Email: youngcarers@westsussex.gov.uk
www.westsussex.gov.uk/education-children-and-families/young-carers

Wheels for ALL Inclusive Cycling (Horsham)

Sessions open to all ages and abilities, held at the Bridge Leisure Centre in Broadbridge Heath. Wide range of adapted trikes and cycles available (listed on their website). Booking required in advance.

Tel: 07764 146339 (Paul Taylor)

Email: paul.taylor@horsham.gov.uk
www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/horsham-wheels-for-all

Wheels for Wellbeing (Crawley)

Specialist cycle track with adapted cycles for wheelchair users and people with disabilities. Open to all abilities (8+) with sessions for 8-18-year-olds held during the school holidays. Based at Cherry Lane BMX track, Crawley.

Email: wheelsforwellbeing@crawley.gov.uk
www.crawley.gov.uk/wfw

Wheelchair and Specialist Seating Service (NHS)

Assesses and provides wheelchairs and seating to people with lifelong and long-term disabilities. Please note that referrals must be made by a GP or other health care professional. After a referral is accepted, people are registered with the service. For reassessment and advice, you can then contact your local team on one of the numbers below. The pathway for children requiring specialist seating is via Chailey’s Clinical Services posture clinic.

Bognor

01243 623650

Email: sc-tr.wheelchairservicebognor@nhs.net

Horsham

01403 620454

Email: sc-tr.wheelchairservicehorsham@nhs.net

Worthing

01273 265850

Email: sc-tr.wheelchairserviceworthing@nhs.net

Repairs

AJM Healthcare, Hailsham
Tel: 01323 847250
www.sussexcommunity.nhs.uk/patients-and-visitors/services/wheelchair-and-specialist-seating-service

Wheely Wonders (Sidlesham)

A family day of forest school, farm activities and crafts, designed for children with disabilities or special needs, their siblings, parents and carers. Get in touch via the online form.

www.woodlandwondersforestschool.co.uk/wheely-wonders

Whoopsadaisy (Brighton)

Courses in conductive education for children aged 0-12 with cerebral palsy and other motor disorders, and their parents.

Tel: 01273 554178

Email: info@whoopsadaisy.org
www.whoopsadaisy.org

Wick Dynamos Junior Football Club

Pan-disability football team with inclusive football training, for boys and girls aged 8-16 years. Saturday mornings at Arun Sports Arena, Ford Airfield, Yapton.

Email: nikki@wickdynamos.com

Windmills Opportunity Playgroup (Burgess Hill)

Inclusive playgroup for preschool children with and without additional needs.

Tel: 01444 220378

Email: manager@windmillsplaygroup.co.uk
www.windmillsplaygroup.co.uk

With You in Mind Counselling

Affordable counselling for adults, young people and children (11+) based in Rustington.

Tel: 07961916363

Email: info@withyouinmindcounselling.co.uk
www.withyouinmindcounselling.co.uk

World’s End Recreation Ground (Burgess Hill)

Inclusive play area with wheelchair accessible swing, sensory panels and path, wheelchair accessible climbing frame and roundabout. Changing Places toilet on site.

Janes Lane, Burgess Hill, RH15 0QJ
www.midsussex.gov.uk/leisure-sport/playgrounds

Worthing Counselling Centre

Confidential counselling service for people on a limited budget who could not otherwise afford it.

Tel: 01903 212275

Email: info@worthingcounsellingcentre.org
www.worthingcounsellingcentre.org

Worthing Lego Club

Runs monthly for children and young people with additional needs and their families at St John’s Church Hall, Worthing.

Tel: 07538 375936
www.facebook.com/worthing.lego.club

Worthing Leisure Centre (South Downs Leisure)

Inclusive holiday, weekend and after-school clubs. One-to-one support can be provided during the holiday activity sessions if required. The centre has a Changing Places toilet, a sensory play area and Aiming High trampolining sessions with a hoist.

Tel: 01903 905050

Email: enquiries@southdownsleisure.co.uk
www.southdownsleisure.co.uk/disability-and-inclusion

Worthing Mencap

Runs a café, information centre, charity shop and various clubs, activities and services for people with learning disabilities, their families and carers in the Worthing area.

Tel: 01903 202030

Email: buddys@worthingmencap.org
www.worthingmencap.org

Worthing Town FC

Open pan-disability football, playing in the Sussex Disability Football League. Inclusive football teams for children (7+) at Palatine Park, Worthing, on Saturdays and adults on Thursday evenings.

Tel: 07760 668705 (Martin Comber)

www.worthingtownfc.com

YMCA Dialogue West Sussex

Face-to-face, video and online support for young people aged 11-18 who live or have a GP in West Sussex. Offering a range of talking therapies, online support options and group sessions for young people who are struggling with their mental health.

Tel: 07739 893707

Email: community.counselling@ymcadlg.org
www.ymcadlg.org/what-we-do/health-and-wellbeing/ymca-dialogue-counselling-services/community-based-counselling-services

YMCA East Surrey (SB)

Provides Short Breaks services in Crawley, Horsham and Mid Sussex under their Yippee (ages 5-11) and Yip4Youth (12-17) groups. Also runs Y Impact (14-18) for those with mild to moderate disabilities in Horsham and Mid Sussex, and Lifeworks Inclusive Activities (16+).

Tel: 01737 222859

Email: sovereign@ymcaeastsurrey.org.uk
www.ymcaeastsurrey.org.uk/children/disability-activities
www.facebook.com/YMCAEastSurrey

Young People’s Shop

Free and confidential support for young people aged 11-25 who are struggling with their mental health, in Chichester and Arun districts.

Tel: 01243 839093

Email: contact@yps-south.org.uk
https://yps-south.org.uk

Youth Emotional Support (YES) (WSCC)

Free service for 11-18-year-olds looking for support with their mental and emotional wellbeing. Referrals can be made by a GP, CAMHS or a school nurse. You can also self-refer via the West Sussex Single Point of Access (SPoA). Referrals must be received before the person turns 18.

Tel: 0330 222 6711

Email: yes@westsussex.gov.uk
https://e-wellbeing.co.uk/services/youth-emotional-support-yes-west-sussex

Your Space (WSCC)

Information and advice for young people aged 11-25. Includes information on jobs, education, bullying, health, leisure, support for SEND and much more.

www.westsussex.gov.uk/education-children-and-families/your-space

Section four: Directories

National directory

AbilityNet

Helps children and adults with disabilities to use computers and access the internet.

Tel: 0300 180 0028

Email: enquiries@abilitynet.org.uk
www.abilitynet.org.uk

ABLEize

Comprehensive online directory of disability and health care information, products, services and groups, run by people with disabilities.

www.ableize.com

AccessAble (formerly DisabledGo)

Accessibility information and other tips for thousands of venues across the UK and the Republic of Ireland.

Tel: 01438 842710

Email: hello@accessable.co.uk
www.accessable.co.uk

Accessible Screenings UK

Searchable online database for accessible screenings in UK cinemas – subtitled, audio described or autism friendly/relaxed. Includes accessibility information for cinemas.

https://accessiblescreeningsuk.co.uk

Action against Medical Accidents (AvMA)

Provides independent advice and support to people affected by medical accidents and works in partnership with health care bodies to improve patient safety.

Tel: 0345 123 2352
www.avma.org.uk

Action for ME

Online information, support and resources, including advocacy, for people who have Myalgic Encephalomyelitis (ME).

Tel: 0117 927 9551

Email: questions@actionforme.org.uk
www.actionforme.org.uk

Activity Alliance

Works to make sure disabled people can lead active lives. Supports sports organisations so they can be as inclusive as possible.

Tel: 0808 1756991

Or via online contact form at www.activityalliance.org.uk

Aerobility

Charity offering disabled people, without exception, the opportunity to fly an aeroplane. You can also watch ‘Armchair Airshows’ free online.

Tel: 0303 303 1230

Email: frontdesk@aerobility.com
www.aerobility.com

Afasic (formerly the Association for All Speech Impaired Children)

Information, videos, advice and training for parents of children with speech, language and communication needs, including developmental language delay (DLD).
Tel (helpline): 0300 666 9410
www.afasic.org.uk

Affinity Hub

Signposting and resources on emotional support for parents of children with special needs. Offers quarterly newsletters on research and information related to parent-carer wellbeing.

www.affinityhub.uk
www.facebook.com/affinityhub.uk

Alliance for Inclusive Education (ALLFIE)

National network of disabled people, parents and teachers campaigning for inclusive education. Contact via website.

Tel: 020 7737 6030
www.allfie.org.uk

Ambitious about Autism

Training and campaigning for improved opportunities for children and young people with autism. Specialist education through TreeHouse School, The Rise School, Spring School, St John’s College and Ambitious College.

Tel: 020 8815 5444

Email: info@ambitiousaboutautism.org.uk
www.ambitiousaboutautism.org.uk

Anti-Bullying Alliance

A coalition of organisations and individuals united against bullying. Offers advice, support and training, including information on SEND, with resources for schools and signposts to support.

Email: aba@ncb.org.uk
www.anti-bullyingalliance.org.uk

Association for Rehabilitation of Communication and Oral Skills (ARCOS)

Provides information, advice, support, training and therapy to children and adults with communication, eating, drinking or swallowing difficulties.

Tel: 01684 576795

Email: admin@arcos.org.uk
www.arcos.org.uk

Attention Deficit Disorder Information and Support Service (ADDISS)

Information, advice and training for people living with ADHD/ADD and their carers/families.

Tel: 020 8952 2800

Email: info@addiss.co.uk
www.addiss.co.uk

Barnardo’s

Works to protect, support and nurture vulnerable children. Not all services are available in West Sussex.

www.barnardos.org.uk

Beat

Information and helpline support for anyone with an eating disorder. Contact via webchat on their website, or on one of the numbers below.

Youthline: 0808 801 0711

Helpline: 0808 801 0677

Email: help@beateatingdisorders.org.uk
www.beateatingdisorders.org.uk

Benefits enquiries

Attendance Allowance (AA)

Tel: 0800 731 0122

Textphone: 0800 731 0317
www.gov.uk/attendance-allowance

Carer’s Allowance

Tel: 0800 731 0297

Textphone: 0800 731 0317
www.gov.uk/carers-allowance-unit

Disability Living Allowance (DLA)
(for under-16s)

Tel: 0800 121 4600

Textphone: 0800 121 4523
www.gov.uk/disability-living-allowance-children

Personal Independence Payment (PIP) (ages 16-64)

Tel: 0800 121 4433 (enquiries)

Tel: 0800 917 2222 (claims)

Textphone: 0800 121 4493 (enquiries)

Textphone: 0800 917 7777 (claims)

www.gov.uk/pip

Universal Credit

Tel: 0800 328 5644

Textphone: 0800 328 1344

Relay phone: 18001, then 0800 328 5644

Video relay also available for BSL users – see website for details
www.gov.uk/universalcredit

BIBIC

Assessment and developmental therapy for people aged from six months to 25 years with brain injuries and other conditions including auditory processing difficulties.

Tel: 01458 253344

Email: sal@bibic.org.uk
https://bibic.org.uk

Birth Trauma Association

Information and support for women and families after a traumatic birth experience.

Tel: 0203 621 6338

Email: support@birthtraumaassociation.org.uk
www.birthtraumaassociation.org

Bladder and Bowel UK

Advice and information on bladder and bowel issues with a dedicated section for children and young people, including those with SEND.

Tel: 0161 214 4591

Email via online contact form at www.bbuk.org.uk

Brain and Spine Foundation

Information, advice and training for people affected by brain and spine conditions.

Helpline: 0808 808 1000

Email: helpline@brainandspine.org.uk
www.brainandspine.org.uk

British Association for Counselling and Psychotherapy (BACP)

Membership organisation governing the professional standards of counsellors and psychotherapists.

Tel: 01455 883300

Email: bacp@bacp.co.uk
www.bacp.co.uk

British Deaf Association

Organisation that campaigns for equality for deaf people and offers a range of services including training in British Sign Language (BSL).

Email: bda@bda.org.uk
https://bda.org.uk

British Dyslexia Association

Information, resources and advice for people with dyslexia or dyscalculia and those supporting them. Can support with assessments. Contact via the website.

Tel (helpline): 0333 405 4567
www.bdadyslexia.org.uk

The British Institute of Learning Disabilities (BILD)

Information, advice and support for people with learning disabilities and their families, including information on apprenticeships and growing older.

www.bild.org.uk

British Wheelchair Basketball

National governing body for wheelchair basketball in the UK, from grassroots to paralympic level. Club-finder tool to find your nearest group (nothing Sussex-based active at time of going to press).

Tel: 01509 279900

Email: office@britishwheelchairbasketball.co.uk
https://britishwheelchairbasketball.co.uk

Brittle Bone Society

Information, advice, events and grant funding for people with brittle bone disease (osteogenesis imperfecta).

Tel: 01382 204446

Email: admin@brittlebone.org
https://brittlebone.org

Brook

Information, advice and support on health and relationship issues for young people under 25, including sexual health, contraception and pregnancy.

www.brook.org.uk

Calvert Lakes (The Calvert Trust)

Charity offering accessible outdoor adventure holidays for children and adults with disabilities. Centres in Exmoor, the Lake District and Northumbria.

https://calvertlakes.org.uk

Care Quality Commission (CQC)

Independent agency regulating health and social care in England.

Tel: 0300 061 6161

Email: enquiries@cqc.org.uk
www.cqc.org.uk

Carer’s Allowance – see Benefits enquiries above

Carers Trust

Information, advice, support and a network of local services for carers.

Tel: 0300 772 9600

Email: info@carers.org
https://carers.org

Carers UK

Advice and support for carers, including a helpline, fact sheets, online forum and information about Carer’s Allowance.

Tel: 0808 808 7777

Email: advice@carersuk.org
www.carersuk.org

CEA Card

A scheme that allows a disabled person aged 5+ to take a carer free of charge to films at participating cinemas. There is a small charge for the card, which is valid for 12 months.

Tel: 01244 526016

Email: info@ceacard.co.uk
www.ceacard.co.uk

Centre for Studies on Inclusive Education (CSIE)

Lobbying, campaigning, research and training for inclusive education.

Tel: 0300 302 3012

Email: admin@csie.org.uk
www.csie.org.uk

Cerebra

Information and advice for families of children with brain conditions, including autism and learning disabilities. Also runs services for sleep issues, legal entitlements, health and money matters, and a lending library offering books and sensory equipment.

Tel: 0800 328 1159

Email: enquiries@cerebra.org.uk
www.cerebra.org.uk

Cerebral Palsy Sport

Supports people with cerebral palsy to maximise their sporting potential via adapted sports such as frame football, swimming, athletics and touch golf.

Tel: 0115 925 7027
Email: info@cpsport.org
www.cpsport.org

The Challenging Behaviour Foundation

Information, support, advice and workshops for families of people with severe learning disabilities and challenging behaviour.

Tel: 0300 666 0126

Email: support@thecbf.org.uk
www.challengingbehaviour.org.uk

Changing Faces

Support and resources for people who have a visible difference.

Tel: 0300 012 0275

Email: info@changingfaces.org.uk
www.changingfaces.org.uk

Changing Places

Changing Places are fully accessible toilets with an adult-sized changing bench, a hoist and space for carers. See the website for locations and more info.

Tel: 020 7803 4814

Email: changingplaces@musculardystrophyuk.org
www.changing-places.org

Child Bereavement UK

Helps children, young people (up to the age of 25) and families to rebuild their lives when a child grieves or a child dies.

Tel: 0800 028 8840

Email: helpline@childbereavementuk.org
www.childbereavementuk.org

Child Brain Injury Trust (CBIT)

Family support, counselling, information, small grants, advice and training for children with acquired brain injuries.

Tel: 0303 303 2248

Email: info@cbituk.org
https://childbraininjurytrust.org.uk

Childcare Choices (HM Government)

Government website providing information and updates about funding and support for childcare costs.

www.childcarechoices.gov.uk

Child Death Helpline

Freephone service staffed by trained volunteers for anyone affected by the death of a child, no matter how long ago.

Tel: 0800 282 986

Email: via the online contact form
www.childdeathhelpline.org.uk

Childline

Free, confidential, 24-hour support for children with any issue. One-to-one counsellor chat available on website.

Tel: 0800 1111
www.childline.org.uk

Child Maintenance Service (CMS)

Government agency that seeks to ensure that parents who live apart from their children contribute financially to their upkeep.

Tel: 0800 171 2345
www.gov.uk/making-child-maintenance-arrangement

Childnet

Resources for parents, including guidance for keeping children with SEND safe online.

www.childnet.com/parents-and-carers

The Choice Forum

An online community for people with learning disabilities and their families where all sorts of topics can be discussed. There is an easy-read guide to staying safe on the forum.

www.choiceforum.org

Citizens Advice

Free, independent and impartial advice on everything from benefits to debt, consumer issues, housing, health and law. Website provides searchable online advice with information on policy and research and a section on finding your local branch. See also Citizens Advice in West Sussex.

National advice line: 0800 144 8848

Consumer helpline: 0808 223 1133

Webchat: available via website
www.citizensadvice.org.uk

ClearVision

Postal lending library of mainstream children’s books with braille and printed text, and tactile books.

Tel: 020 8789 9575

Email: info@clearvisionproject.org
www.clearvisionproject.org

Cleft Lip and Palate Association (CLAPA)

For families (and expectant parents) of children with a cleft lip and/or palate. Includes online feeding support, information, support groups via Zoom, Facebook group and weekends for 8-13-year-olds.

Tel: 020 7833 4883

Email: info@clapa.com
www.clapa.com

The Compassionate Friends

A parent-led group that offers support and care to anyone who has suffered the death of a child of any age.

Tel: 0345 123 2304

Email: helpline@tcf.org.uk
www.tcf.org.uk

Computers for the Disabled

Information, advice and the provision of recycled computers to disabled people and organisations.

Tel: 01268 284834 or 07949 530509

Email: bigpaulh@blueyonder.co.uk
www.cftd.co.uk

Contact

National charity for families with disabled children, campaigning for their rights to be included and equal in society. Provides information, advice and support including a free helpline and a large online resource library. See also Fledglings online shop.

Tel (helpline): 0808 808 3555

Email: helpline@contact.org.uk
https://contact.org.uk
www.facebook.com/contactfamilies

Coram Children’s Legal Centre and Child Law Advice

Provides legal advice, information and representation for children and young people and their families. Initial information and enquiries supported by Child Law Advice. The Coram Children’s Legal Centre can support with accessing legal aid and representation.

Family/child law: 0300 330 5480

Education law: 0300 330 5485
www.childlawadvice.org.uk
www.childrenslegalcentre.com

Council for Disabled Children

Umbrella organisation that campaigns on behalf of the disabled children’s sector. Part of the National Children’s Bureau. Online resource library.

Email: cdc@ncb.org.uk
https://councilfordisabledchildren.org.uk

Cruse Bereavement Support

Counselling, information and support for bereaved people. National helpline. Search the website for your nearest branch.

Tel: 0808 808 1677
www.cruse.org.uk

CVI Society

Information, signposting and support for people with CVI, and help to connect with other people who understand.

https://cvisociety.org.uk

Disability Equipment Service

National website for new and used disability equipment.

Tel/text: 07845 041678
www.disabilityequipmentservice.co.uk

Disability Law Service

Legal advice and representation for disabled people and their carers.

Tel: 020 7791 9800

Email: helpline@dls.org.uk
https://dls.org.uk

Disability Living Allowance (DLA) – see Benefits enquiries

Disability Rights UK

Promotes equal participation for all. Provides information, advice, resources, helplines and campaigns on independent living and careers.

Tel: 0330 995 0400

Email: enquiries@disabilityrightsuk.org
www.disabilityrightsuk.org

Disabled Students’ Allowances – see Student Finance England

Down Syndrome Education International

Information, advice and research to improve education and outcomes for young people with Down syndrome.

Email: hello@dseinternational.org
www.dseinternational.org/en-gb

Down’s Heart Group

Offers support and information relating to heart conditions associated with Down’s syndrome.

Tel: Complete online form on website to request a callback

Email: info@dhg.org.uk
https://dhg.org.uk

Down’s Syndrome Association

Information, advice and support for people with Down’s syndrome and their families.

Tel (helpline): 0333 121 2300

Email: info@downs-syndrome.org.uk
www.downs-syndrome.org.uk

Dwarf Sports Association UK

Making regular sporting opportunity accessible and enjoyable to anyone and everyone of restricted growth.

Tel: 07889 922 736
www.dsauk.org

Early Years Alliance

Information, advice, training and support for parents and professionals to help families access high quality early learning opportunities.

Tel: 020 7697 2595

Email: info@eyalliance.org.uk
www.eyalliance.org.uk

Education Otherwise

Charity supporting and providing information to home-educating families in England and Wales. Promotes parents’ rights to home educate if they choose.

Tel: 0300 124 5690

Email: enquiries@educationotherwise.org
www.educationotherwise.org

Epilepsy Action

Information, advice, training, support and campaigning on behalf of people with epilepsy.

Tel: 0808 800 5050

Email: helpline@epilepsy.org.uk
www.epilepsy.org.uk

Enhance the UK

Charity run by disabled people, aiming to change the way disability is viewed for the better. Offers training and advice to businesses, as well as online resources.

Tel: 0208 226 5055

Email: hello@enhancetheuk.org
https://enhancetheuk.org

Equality Advisory and Support Service (EASS)

Advises and assists individuals on issues relating to equality and human rights, such as disability rights and discrimination. Has online resources such as template letters. Contact via the website.

Tel (helpline): 0808 800 0082
www.equalityadvisoryservice.com

Equality and Human Rights Commission

Challenges discrimination and protects and promotes human rights. NB: For advice and support, contact the EASS above.

www.equalityhumanrights.com

ERIC (Children’s Bowel and Bladder Charity)

Information on bowel and bladder health for children and teenagers. Includes a helpline service for parents, downloadable resources and an online shop selling continence products.

Helpline: 0808 801 0343
www.eric.org.uk

Euan’s Guide

Online guide to venues with good disabled access throughout the UK. Reviews of venues are written by disabled people and their families.

Tel: 0131 510 5106

Email: hello@euansguide.com
www.euansguide.com

Evelina London Children’s Hospital

Part of Guy’s and St Thomas’ NHS Trust, this is a specialist hospital offering treatment to children and young people from across the South East. Referrals are usually made from local medical services.

Tel: 020 7188 7188
www.evelinalondon.nhs.uk

Evenbreak

Global disability jobs board, run by and for people with lived experience of disability.

www.evenbreak.com

Everyone Can

Information, advice and assessment to enable disabled people to speak, live independently, control their environment and have fun through gaming. Runs a fully accessible gaming centre in Manchester.

Tel: 0808 800 0009
www.everyonecan.org.uk

Family Fund

Charity offering grants and digital support services to families of children with a disability or a serious or life-limiting illness.

Tel: 01904 550055
www.familyfund.org.uk

Family Lives

Information, advice and support for families on any aspect of family life or parenting.

Tel: 0808 800 2222

WhatsApp message: 07441 444125

Or live chat via www.familylives.org.uk

Family Planning Association

Advice, resources and more on sexual health, relationships and growing up, with books and numerous resources geared towards children and young people and easy-read guides for people with learning disabilities.

Sexual health line: 0300 123 7123
www.fpa.org.uk/contact-us

Family Rights Group

Information and advice – plus support to hold Family Group conferences – for parents whose children are in need, at risk or in the care system, and for members of the wider family who are raising children unable to remain at home.

Tel: 0808 801 0366
www.frg.org.uk

Farm Buddies

Social care farming is the therapeutic, social and educational use of farming practices for anybody aged 9-90 with any mild or moderate additional needs. Free Find-a-Farm service for parents, teachers and others can find a farm to suit someone’s interests and support needs.

www.farmbuddies.org.uk

First-tier Tribunal (Special Educational Needs and Disability)

Tribunal that hears appeals by parents against decisions made by their local education authority concerning their child’s education. Also able to make recommendations regarding health and social care.

Tel: 0300 303 5857

Email: send@justice.gov.uk
www.gov.uk/courts-tribunals/first-tier-tribunal-special-educational-needs-and-disability

Fledglings

Sells clothing, toys and sensory products that improve the lives of disabled children and their families. The not-for-profit online shop is run by Contact.

Tel: 020 3319 9772

Email: fledglings@contact.org.uk
https://fledglings.org.uk

Foundation for People with Learning Disabilities

Wide range of services providing information, forums, training and campaigning on behalf of people with learning disabilities.

www.learningdisabilities.org.uk

Fragile X Society

Offers information, advice and peer support to families of children with fragile x syndrome. Has a newsletter, Facebook page, helpline service and online resources.

Tel: 01371 875100

Email: info@fragilex.org.uk
www.fragilex.org.uk

Gene People (formerly Genetic Disorders UK)

Information, advice and a helpline led by genetic counsellors, for families affected by genetic conditions.

Tel: 0800 987 8987

Email: helpline@genepeople.org.uk
https://genepeople.org.uk

Genetic Alliance UK

An alliance of over 200 patient organisations, this charity works to improve the lives of individuals and families affected by rare, genetic and undiagnosed conditions. Both Rare Disease UK and SWAN UK are part of this charity.

Tel: 0300 124 0441
www.geneticalliance.org.uk

Get Safe Online

Website with tips and explanations about all things online, from protecting your devices and using social media to gaming and banking.

www.getsafeonline.org

Gingerbread

Organisation supporting single parents. Offers online advice and information, including on parenting a child with autism or a disability, as well as a forum and local groups and meet-ups.

Tel: 0808 802 0925
www.gingerbread.org.uk

Girlguiding

National umbrella organisation for girl guides throughout the UK. Special funding and support available to girls with additional needs. Different groups/sections for ages 4-30.

Tel: 0800 169 5901

Email: infoteam@girlguiding.org.uk
www.girlguiding.org.uk/information-for-volunteers/running-your-unit/including-all/including-members-with-additional-needs
www.facebook.com/girlguidinguk

Global Mediation

If you disagree with the local authority over an EHC assessment, or the provision of or content of an EHC Plan, you have the right to go to mediation, or to appeal to the first-tier tribunal. In order to register an appeal to the tribunal, you must first contact an independent mediation adviser and obtain a certificate to prove that you have done so.

Tel: 0208 441 1355

Email: info@globalmediation.co.uk
www.globalmediation.co.uk

Go Kids Go!

Provides wheelchair skills training to children and young people across the UK.

Tel: 01482 887163

Email: roy@go-kids-go.org.uk
www.go-kids-go.org.uk

Great Britain Wheelchair Rugby

National governing body that promotes and supports clubs throughout the country. Offers a junior programme for ages 8-17. Search for clubs via their website.

Tel: 0208 831 7645

Email: info@gbwr.org.uk
https://gbwr.org.uk

Great Ormond Street Hospital (GOSH)

A leading specialist children’s hospital based in London. Children and young people are mostly referred to GOSH by their local paediatricians.

Tel: 020 7405 9200
www.gosh.nhs.uk

Guide Dogs

Guide dogs and other specialised services for children and young people with visual impairments, including information and advice.

Tel: 0800 781 1444

Email: information@guidedogs.org.uk
www.guidedogs.org.uk

Headway

Support, information and services for people affected by brain injuries, and their families and carers.

Tel: 0808 800 2244

Email: helpline@headway.org.uk
www.headway.org.uk

HemiHelp (now part of Contact)

Information, support and advice for families of children with hemiplegia. Go to Contact’s website (below) and search for ‘hemiplegia support’.

https://contact.org.uk

Henry Spink Foundation

Information and resources on a wide range of conventional and complementary therapies for SEND.

www.henryspink.org

Hidden Disabilities: sunflower lanyard scheme

A sunflower design lanyard for people with hidden disabilities such as ADHD, autism, dementia and sensory impairments, which can alert staff that wearers may need additional assistance.

https://hdsunflower.com/uk

Home Education Advisory Service

Provides regular advice and publications about home education, with access to a helpline upon registration.

www.heas.org.uk

Independent Provider of Special Education Advice (IPSEA)

Information, resources and legal advice on education issues and appeals for children and young people with SEND. Also runs training courses for parents and professionals around SEND law. See the website for details of the helpline, and to book a callback if needed.

Tel (helpline): 0300 222 5899
www.ipsea.org.uk

Jobcentre Plus

Helps people find jobs and/or claim benefits. Offices in Bognor Regis, Chichester, Crawley, Haywards Heath, Horsham, Littlehampton and Worthing.

Tel: 0800 169 0190

Textphone: 0800 169 0314
www.gov.uk/contact-jobcentre-plus

Kids

Charity offering a range of support to disabled children and young people: online support to parents and carers to navigate SEND; a participation programme for children and young people; and an online hub created by young disabled people with guides and virtual wellbeing services.

www.kids.org.uk

King’s College Hospital

London hospital offering comprehensive clinical services to children, both local and from further afield. Family-centred holistic services for children with complex disorders within one unit.

Tel: 020 3299 3560
www.kch.nhs.uk

The King’s Trust

The King’s Trust (formerly known as The Prince’s Trust) supports young people aged 16-30 who are looking to build their confidence, need help getting a job or want support starting a business.

www.kingstrust.org.uk

Kinship

Information, advice, training and peer support for kinship carers – grandparents and other relatives or family friends raising children when their parents can’t.

Tel (advice line): 0300 123 7015

Email: via online form to advice team
https://kinship.org.uk
www.facebook.com/Kinshipcarecharity

Learning Disability Health Facilitation Team (Sussex Community NHS Foundation Trust)

Supports people with a learning disability over the age of 14 in West Sussex to access community and hospital health services.

Tel: 01403 620 438

Email: sc-tr.ldhf-horsham@nhs.net
www.sussexcommunity.nhs.uk/patients-and-visitors/services/learning-disabilities-health-facilitation-team

Letterbox Library

Specialises in multicultural, inclusive books that celebrate diversity. Has a selection of books featuring children with SEND.

Tel: 020 8534 7502

Email: info@letterboxlibrary.com
www.letterboxlibrary.com

Listening Books

Internet-based library service providing audiobooks for people who find it difficult or impossible to read owing to illness, learning difficulties or disabilities.

Tel: 020 7407 9417

Email: info@listening-books.org.uk
www.listening-books.org.uk

Little People UK

Information, advice and support for those with dwarfism and their families, along with events and campaigning.

Tel: 07925 893398

Email: info@littlepeopleuk.org

Or via the online contact form at https://littlepeopleuk.org

Living Made Easy (formerly Disabled Living Foundation)

Provides information and advice, including a database of recommended equipment for independent living.

Email: lme-enquiries@shaw-trust.org.uk
https://livingmadeeasy.org.uk

Local Government and Social Care Ombudsman

Investigates complaints about local authorities and other organisations providing public services. See their website for information on how to make a complaint before making contact.

Tel: 0300 061 0614

Email via online complaint form at www.lgo.org.uk

Lord’s Taverners

Supports free, inclusive cricket programmes, including Super 1s and Table Cricket. Offers weekly sessions around the country that promote exercise, competition and the development of life skills among young people. See Sussex Super 1s for local sessions.

www.lordstaverners.org

The Makaton Charity

Resources, information and training workshops on the Makaton communication system for families and carers.

Tel: 01276 606760

Email: help@makaton.org
www.makaton.org

Max Card

The UK’s leading discount card for cared for and looked after children. Families can use their Max Card at venues across the UK to get free or discounted admission. Joining the West Sussex Disability Register entitles the individual to a free Max Card.

https://mymaxcard.co.uk

Mencap

Wide-ranging services for people with learning disabilities and their families and carers, including family support, wills and trusts, education and benefits advice.

Tel (helpline): 0808 808 1111

Email: helpline@mencap.org.uk
www.mencap.org.uk

MERU

Designs and makes custom-built equipment for people with disabilities. Also offers a switch-adapting service for interactive toys and a loan scheme for their Bugzi, a specialist power wheelchair for users up to around the age of six, based on weight of up to 25kg or lower leg measurement (back of knee to heel) of up to 33cm.

Email via online contact form at
https://meru.org.uk

Metabolic Support UK

Support, information and services for people with inherited metabolic disorders and their families.

Tel: 0800 652 3181

Email via online contact form at www.metabolicsupportuk.org

Mind

Provides information, advice and support to empower people experiencing mental health issues.

Infoline: 0300 123 3393

Support line: 0300 102 1234

Welfare benefits line: 0300 222 5782

Legal line: 0300 466 6463 (advice around detention under the Mental Health Act (sectioning), mental capacity, community care and discrimination and equality)

Email: info@mind.org.uk
www.mind.org.uk

The Mix

Free, confidential support and counselling for under-25s. Contact by live online messaging, discussion boards or text as below.

Crisis Messenger: text THEMIX to 85258
www.themix.org.uk

Motability

National scheme enabling people to exchange the higher rate mobility component of DLA or PIP for a car, powered wheelchair or scooter. Contact them via the online form.

Motability Foundation Grants Team: 0800 500 3186
www.motability.co.uk

Muscular Dystrophy UK

Charity providing services and resources to people with muscle-wasting conditions, including muscular dystrophy.

Tel: 0800 652 6352

Email: info@musculardystrophyuk.org
www.musculardystrophyuk.org

National Association for Special Educational Needs (NASEN)

Promotes the education, training and development of all those with special educational and additional learning support needs. Particular focus on CPD and support for professionals working in SEND.

Tel: 01827 311500

Email: welcome@nasen.org.uk
www.nasen.org.uk

National Autistic Society (NAS)

Offers information, resources and support to people with autism and their families, and campaigns on their behalf. Runs specialist schools and day centres, and has volunteer-led branches around the UK. Helplines suspended at time of going to press pending restructure. Visit the ‘advice and guidance’ pages on the website for topic-specific help and updates.

Email: nas@nas.org.uk
www.autism.org.uk

National Careers Service

Information and advice about education, training and work. Webchat or email form available on website.

Tel (helpline): 0800 100 900
https://nationalcareers.service.gov.uk

National Children’s Bureau (NCB)

Campaigns to enable children and young people to fulfil their right to grow up safe, secure and supported so they can achieve their potential. Networks such as the Council for Disabled Children and the Anti-Bullying Alliance are affiliated with the NCB.

www.ncb.org.uk

National Deaf Children’s Society (NDCS)

Supports children and young people with hearing impairments and their families. Has online resources and a helpline, forum and dedicated website for children and young people aged 8-18. In addition to the helpline and texting, they offer SignVideo and Live chat via the website.

Tel: 0808 800 8880

Text (SMS): 0786 00 22 888
www.ndcs.org.uk

National Development Team for Inclusion (NDTi)

Independent not-for-profit organisation using a human rights approach to raise aspirations and outcomes for people of all ages, including children and young people, at risk of exclusion with a learning disability, autism or a mental health issue.

Tel: 01225 255268

Email: office@ndti.org.uk
www.ndti.org.uk

National Institute of Conductive Education (NICE)

Workshops, training and outreach services on principles and methods of conductive education for people with movement disorders such as global development delay, dyspraxia, cerebral palsy and acquired brain injury.

Tel: 0121 449 1569

Email: foundation@conductive-education.org.uk
www.conductive-education.org.uk

National Trust

The Essential Companion Card allows free entry to National Trust places for up to two carers when accompanying a paying guest or member. Nymans offers a Changing Places toilet, as do a few other locations nationally.

Tel: 0344 800 1895

Email: enquiries@nationaltrust.org.uk
www.nationaltrust.org.uk/features/access-for-everyone

National Union of Students (NUS)

Represents the interests of students. Every university and most colleges have a student union affiliated to the NUS, which provides support to students and information and advice for prospective students.

www.nus.org.uk
www.facebook.com/nationalunionofstudents

Natspec

Online directory of organisations offering specialist further education and training for students with learning difficulties and/or disabilities.

Email: info@natspec.org.uk
www.natspec.org.uk

Network 81

Small charity offering advice and advocacy support for parent-carers on issues around special educational needs. Can support with SEND tribunals.

Tel: 0845 077 4055

Email: advice@network81.org.uk
www.network81.org.uk

Newbold Hope

Parent-led organisation working with families and professionals to reduce ‘anxiety-led difficult and dangerous behaviour in children with an additional need or disability’. Produces advice, videos, newsletters, free (and paid-for) resources and training. Also works to reduce discrimination and blame experienced by parents of children with behaviour that challenges.

Email: via contact form on website
www.newboldhope.com
www.facebook.com/newboldhope

Newlife, the Charity for Disabled Children

Equipment and play therapy pods for loan, and equipment grants for children with disabilities and life-limiting conditions. Also runs a helpline staffed by experienced nurses who can offer advice and support.

Tel: 0800 902 0095

Email: nurse@newlifecharity.co.uk
https://newlifecharity.co.uk

NHS

Official NHS website. Includes information on conditions, treatment and support.

www.nhs.uk

NHS 111

NHS non-emergency number.

Tel: 111 (free from landline or mobile)

Not Fine in School

Parent-led support group providing information, resources and online peer support for families with children experiencing school attendance barriers or EBSA. Public and closed Facebook groups.

Email: via online form
https://notfineinschool.co.uk/home

NSPCC

Charity with advice on keeping children safe and well. Works to educate about and prevent abuse. Website has parenting information and advice on a wide range of topics around child and parental wellbeing.

Tel: 0808 800 5000

Email: help@nspcc.org.uk
www.nspcc.org.uk

Office for Standards in Education, Children’s Services and Skills (Ofsted)

Government body that regulates and inspects schools, educational settings and children’s services.

Tel: 0300 123 1231

Email: enquiries@ofsted.gov.uk
www.gov.uk/government/organisations/ofsted

Office for Students (OfS)

Independent public body regulating higher education in England for the protection of student interests. Maintains standards for inclusion and participation.

Tel: 0117 931 7317
www.officeforstudents.org.uk

Paediatric Pain Profile (PPP)

The Paediatric Pain Profile (PPP) is a behaviour-rating scale for assessing pain in children with severe physical and learning impairments. However, because the children have difficulty in communicating their pain, it can go unrecognised and untreated. Because it can be difficult for parents and for health care professionals to distinguish which behaviours do indicate pain and to follow the progress of pain-relieving treatments, there is a pain assessment scale specifically for this population of children.

https://ppprofile.org.uk

Papyrus

If you are having thoughts of suicide or are concerned for a young person who might be, contact HOPELINEUK for confidential support and practical advice.

Tel: 0800 068 4141

Text: 88247

Email: pat@papyrus-uk.org
https://papyrus-uk.org

Parliamentary and Health Service Ombudsman

Makes final decisions on complaints that have not been resolved by NHS England, UK government departments or other public organisations.

Tel (helpline): 0345 015 4033
www.ombudsman.org.uk

Patients Association

Offers confidential information, advice and support about the health and social care system.

Tel: 0800 345 7115
www.patients-association.org.uk

Peeps

Charity dedicated to supporting those affected by HIE (hypoxic-ischaemic encephalopathy) through the provision of information, peer support and funding for counselling and equipment.

Tel: 0800 987 5422 or 07838 197945

Email: info@peeps-hie.org
www.peeps-hie.org

Personal Independence Payment (PIP) – see Benefits enquiries

Phab

Recreational activities, specially equipped short breaks and holidays and clubs for children and adults with and without disabilities.

Tel: 020 8667 9443

Email: info@phab.org.uk
www.phab.org.uk

PINNT

Information, advice and support groups for patients on parenteral (intravenous) and enteral (nasogastric, gastrostomy and jejunostomy) feeds.

Tel: 020 3004 6193

Email: comms@pinnt.com
https://pinnt.com

Potential Plus UK

Offers several different assessments and bookable telephone advice (fees charged, but there is a scholarship fund available). Advice provided to help families support children with dual or multiple exceptionality (DME) – who have high learning potential and a special educational need through a learning difficulty or a disability – and how to support their needs at both home and school.

Email: amazingchildren@potentialplusuk.org
https://potentialplusuk.org

Priority Services Register

Helps utility companies look after customers with extra communication, access or safety needs in case of interruption to supply of gas, electric or water. Free to join. See website for eligibility and to sign up.

www.thepsr.co.uk

Queen Elizabeth Foundation for Disabled People

Supports children and adults with physical and learning disabilities with specialist advice and assistive equipment to increase independent mobility, or residential services supporting people to learn key life skills; providing neuro rehabilitation to rebuild a life affected by brain injury; enabling disabled people to maximise their independence and achieve their potential.

Tel: 01372 841100
Email: info@qef.org.uk
www.qef.org.uk

Rainbow Trust

Support in hospital and at home for families who have a child aged 0-18 with a life-threatening or terminal illness. Also offers bereavement support.

Tel: 01372 363438

Email: enquiries@rainbowtrust.org.uk
https://rainbowtrust.org.uk

Rare Disease UK

A campaign run by Genetic Alliance UK that aims to ensure all patients and families living with rare conditions have access to high quality services, treatment and support.

https://geneticalliance.org.uk/campaigns-and-research/rare-disease-uk

Reach

Membership-based organisation providing information and support for children with upper limb differences.

Tel: 0300 365 0078

Email: reach@reach.org.uk
https://reach.org.uk

Regard

National organisation that highlights disability issues within the LGBT community and LGBT issues within the disability community, campaigns on issues affecting disabled LGBT people and works to combat social isolation among its membership.

Email: secretary@regard.org.uk
https://regard.org.uk

Remap

Tailor-made special equipment for disabled people, designed and built by expert volunteers.

Tel: 01732 760209

Email: data@remap.org.uk
www.remap.org.uk

Rett UK

Helpline, resources, local support groups and clinics at major hospitals for children and adults with Rett Syndrome.

Helpline: 01582 798911

Email: support@rettuk.org
www.rettuk.org

Riding for the Disabled (RDA)

Umbrella organisation representing local groups that provide riding, carriage driving and more. Welcomes people of all ages with physical or learning disabilities and autism.

Tel: 01926 492915

Email: info@rda.org.uk
www.rda.org.uk

RNIB Newsagent (formerly National Talking Newspapers)

An extensive range of popular newspapers and magazines, including children’s magazines (free) such as National Geographic Kids and First News, in a range of formats for visually impaired people.

Tel: 0303 123 9999

Email: helpline@rnib.org.uk
www.rnib.org.uk/newsagent

Royal Brompton and Harefield Hospitals

London and Uxbridge hospitals that make up the largest heart and lung centre in the UK for patients, including children, with complex cardiac conditions and lung disease.

Royal Brompton

Tel: 020 7352 8121

Harefield

Tel: 01895 823737
www.rbht.nhs.uk/our-services/paediatrics

Royal National Institute of Blind People (RNIB)

Wide range of services, including: information and advice; training and resources; research; regional support; newsagent; talking books; and campaigning on behalf of people with sight loss.

Tel: 0303 123 9999
www.rnib.org.uk

Royal Society for Blind Children (RSBC)

Information, advice, activities and support for blind and partially sighted children and young people and their families. Also runs a specialist further education college.

Tel: 020 3198 0225

Email: connections@rsbc.org.uk
www.rsbc.org.uk

Samaritans

Free 24-hour helpline for people to call and talk through problems with trained volunteers.

Tel: 116 123 (free)

Email: jo@samaritans.org
www.samaritans.org

SANE

Charity offering support and care to people with mental health problems and their families or carers. Has a helpline and email service, an online forum and resources.

Helpline: 0300 304 7000

Email: support@sane.org.uk
www.sane.org.uk

Scope

Charity for people with disabilities and their families and carers. Offers a helpline, information, advice and much more.

Tel: 0808 800 3333

Email: helpline@scope.org.uk
www.scope.org.uk

The Scout Association

Umbrella organisation representing the Scouting movement in the UK. Different sections for specific age groups (ages 4-25) listed on the website. For information on inclusion, click on ‘info for parents’ and ‘scouts with additional needs’.

Tel: 0345 300 1818

Email: support@scouts.org.uk
www.scouts.org.uk

Seeability

Supports people who have learning disabilities or autism, who may also have sight loss, to live ambitious lives and achieve things they never thought possible. Offers residential homes, supported living, supported employment, help finding an optometrist for someone with learning disabilities and more.

Tel: 01372 755 000

Email: enquiries@seeability.org
www.seeability.org

Sense

Supports people with complex disabilities, including those who are deafblind. Offers information and advice, specialist children’s services, summer holidays and short breaks.

Tel: 0300 330 9256

Email: info@sense.org.uk
www.sense.org.uk

Shine

Support and online resources from before birth for people who have spina bifida and/or hydrocephalus and their families/carers.

Tel: 01733 555988

Email: firstcontact@shinecharity.org.uk
www.shinecharity.org.uk

Shout

24/7 text service for anyone who is struggling to cope and needs immediate support.

Text SHOUT to 85258
www.giveusashout.org

Sibs

Charity for the siblings of disabled people. YoungSibs section on website provides direct support and advice aimed at children (aged 7-17). Network of adult sibling support groups. Information for parents online. Contact via online form.

www.sibs.org.uk

Signalong

Information, advice, training and research into the development of the Signalong system of communication.

Tel: 0330 120 0770

WhatsApp: 07446 462146

Email: admin@signalong.org.uk
www.signalong.org.uk

Singing Hands

Online Makaton and baby signing workshops for families and professionals. Digital Makaton resources, signed stories and songs to watch or download, and an online shop selling Makaton signed DVDs.

Tel: 020 8288 1706

Email: info@singinghands.co.uk
www.singinghands.co.uk

SKIGGLE

Network of people willing to give disability-related items to others in times of need. Members can also buy, sell or donate disability aids and equipment via their marketplace.

Email: info@skiggle.co.uk
https://skiggle.co.uk
www.facebook.com/SkiggleUK

SOS!SEN

Free (though some services are chargeable), independent and confidential help for parents and others looking for information and advice on special educational needs provision. Check the website for helpline opening times. Pre-registration is required for all services.

Tel (term time only helpline): 0208 538 3731
www.sossen.org.uk

Southampton Children’s Hospital

Major centre for specialist paediatric services. If you, your child or someone you care for has a learning disability and/or autism, contact the LDA team to discuss coming into hospital and how they can help.

Tel: 07464 923263 or 023 8120 5367

Email: lda@uhs.nhs.uk

Hospital switchboard: 023 8077 7222
www.uhs.nhs.uk/Ourhospitals/SCH/SouthamptonChildrensHospital.aspx

Speech & Language UK (Formerly I CAN)

Information services, including bookable advice sessions and webinars, providing help and advice to parents about speech, language and communication, as well as training for practitioners.

https://speechandlanguage.org.uk

Special Educational Needs Transport Advocacy Service (SENTAS)

Information and advice for parents and young people concerning issues with SEND home-to-school/college transport.

Email: info@sentas.co.uk
https://sentas.co.uk

Special Needs Jungle

Parent-led information and resources regarding SEND, with articles, the latest research, legal advice and a resource hub.

www.specialneedsjungle.com

Steps Charity Worldwide

Supports people who have childhood lower limb conditions such as talipes (club foot), hip dysplasia (DDH) and Perthes disease. Email via the website.

Tel: 01925 750271
www.stepsworldwide.org

St George’s Hospital

London hospital offering specialist children’s services.

Tel: 020 8672 1255
www.stgeorges.nhs.uk/service/childrens-services-2

Student Bursary Support Service

Online service used to administer student support for the Care to Learn scheme and the 16 to 19 Bursary Fund for vulnerable students.

www.gov.uk/guidance/student-bursary-support-service

Student Finance England

Government website with information about financing higher education, including tuition fee and living cost loans. Eligibility criteria and application available online. Also links to information on Disabled Students Allowance (DSA) and the new Lifelong Learning Entitlement (LLE) available from January 2026.

Tel: 0300 100 0607

Textphone: 18001, then 0300 100 0607
https://studentfinance.campaign.gov.uk
www.facebook.com/SFEngland

Switchboard

National LGBTQIA+ support line. For anyone, anywhere in the country, at any point in their journey. Discuss anything related to sexuality or gender identity, including sexual health, relationships or just the way you’re feeling.

Tel: 0800 0119 100

Email: hello@switchboard.lgbt
https://switchboard.lgbt

Syndromes Without a Name (SWAN UK)

Dedicated support network for families of children and young adults with undiagnosed genetic conditions. Part of Genetic Alliance UK.

https://geneticalliance.org.uk/support-and-information/swan-uk-syndromes-without-a-name

Talking Books

Run by the RNIB, this free service for people with sight loss provides talking books in a variety of formats, and books in braille and large print.

Tel: 0303 123 9999
www.rnib.org.uk/books

Thinkuknow

Advice to keep your child/young person safe online, along with information on sex, relationships and parental controls for devices.

www.thinkuknow.co.uk/parents

Time Away

Offers a break away from the home environment, helping families come to terms with a life-changing, long-term diagnosis in a young child.

Tel or WhatsApp: 07942 289910

Email: hello@timeaway.org.uk
https://timeaway.org.uk

Together for Short Lives

Charity for children and young people with life-shortening or life-threatening health conditions.

Tel: 0808 808 8100
www.togetherforshortlives.org.uk

Tourette’s Action

Supports people with Tourette’s Syndrome and their families. Offers information and support, has a help desk and support groups.

Email: help@tourettes-action.org.uk

Live chat via the website: www.tourettes-action.org.uk

Unique

Information and networking for families and individuals affected by rare chromosome disorders.

Tel: 01883 723356

Email: help@rarechromo.org
www.rarechromo.org

Universal Credit – see Benefits enquiries

University and College Admission Service (UCAS)

Central organisation that processes university applications. Can support young people making post-GCSE choices and those applying for undergraduate/postgraduate courses.

Tel: 0371 468 0468 (undergraduates)

www.ucas.com
www.facebook.com/ucasonline

What? Why? Children in Hospital

Information and videos of common medical procedures to help parents prepare children and young people for hospital appointments.

www.whatwhychildreninhospital.org.uk

WheelPower

Offers opportunities for disabled people to play wheelchair sports to help them lead healthy, active lives.

Tel: 01296 395995

Email: info@wheelpower.org.uk
www.wheelpower.org.uk

Whizz-Kidz

Provides mobility equipment to under-18s (eligibility criteria apply – see Grantmaking Directory). Also offers skills training and opportunities for disabled children and young people to meet and socialise in person and online (up to age 25). Register your details to access services locally. Also runs sibling groups (ages 7-11 and 12-15), closed Facebook groups for their alumni network (25+) and Families, for parent-carers.

Tel: 020 7233 6600

Email: General enquiries -info@whizz-kidz.org.uk
Kids’ services -kidzservices@whizz-kidz.org.uk
www.whizz-kidz.org.uk

Winston’s Wish

National charity providing information, advice and support to bereaved children and young people (0-25) and their families.

Tel: 08088 020 021

Email: ask@winstonswish.org
www.winstonswish.org

Working Families

Advice for working parents and carers on topics such as employment rights, in-work benefits and flexible working options. Includes a separate section for parents of disabled children.

Tel: 0300 012 0312

Email: via online form: www.workingfamilies.org.uk

Young Epilepsy

Supports children and young people with epilepsy and associated conditions, with advice on diagnosis, treatment and living with epilepsy.

Tel: 01342 832243

Text: PURPLE to 85258 (Shout text service)

www.youngepilepsy.org.uk

Young Minds

Supports the wellbeing and mental health of children and young people, with resources on a range of mental health conditions for young people and parents.

Parents’ helpline: 0808 802 5544
https://youngminds.org.uk

Section four: Directories

Education directory

EDUCATION SETTINGS

NURSERY SCHOOLS AND CHILDCARE

Information on childcare options in West Sussex, including nurseries, child minders and nanny agencies can be found at
https://familyinfoservice.westsussex.gov.uk/Synergy/PublicEnquiry

Kamelia Kids

Inclusive day nursery for children of all abilities aged from 0-6 years.

Location: Goring by Sea

Tel: 01903 504077
www.kameliakids.org.uk

Bognor Regis Nursery School (Special Support Centre)

Special Support Centre for children with significant speech and language needs and/or other special educational needs.

Location: Bognor Regis

Tel: 01243 642925

Email: office@brns.org
www.brns.org

Boundstone Nursery School (Speech and Language Unit)

Special Support Centre for young children with significant speech and language difficulties.

Location: Lancing

Tel: 01903 276860

Email: office@boundstonenursery.co.uk
www.boundstone-lancingcfc.co.uk

Chichester Nursery School (Special Support Centre)

Special Support Centre for children with significant speech and language needs, and those who have social communication difficulties.

Location: Chichester

Tel: 01243 642959

Email: office@chichesternursery.org
https://chichesternursery.org

Horsham Nursery School (Special Support Centre)

Special Support Centre for children with specific, significant speech and language needs.

Location: Horsham

Tel: 01403 224430
Email: office@horshamnursery.co.uk
www.horshamnursery.co.uk

Dame Vera Lynn Children’s Charity

Early intervention based on the principles of conductive education, for families of under-fives with cerebral palsy and other motor learning impairments.

Location: Cuckfield

Tel: 01444 473274

Email: info@dvlcc.org.uk
https://dvlcc.org.uk

MAINSTREAM SCHOOLS

You can find a complete list of all West Sussex schools and colleges at
www.westsussex.gov.uk/education-children-and-families/schools-and-colleges/find-a-school-academy-or-college

SPECIAL SUPPORT CENTRES IN MAINSTREAM PRIMARY

Barnham Primary School (Special Support Centre)

Special school support facility for children who have physical disabilities and/or speech and language needs.

Location: Barnham

Tel: 01243 552197
Email: office@barnhamprimaryschool.co.uk
www.barnhamprimaryschool.co.uk

Desmond Anderson Primary Academy (Special Support Centre)

Special Support Centre for children with autism spectrum conditions or social and communication needs.

Location: Crawley

Tel: 01293 525596

Email: office@desmondandersonprimaryacademy.org.uk
www.desmondandersonprimaryacademy.org.uk

Durrington Infant and Junior Federated Schools (Special Support Centre)

Special Support Centre for children aged 7-11 with autism spectrum conditions or social and communication difficulties.

Location: Worthing

Tel: 01903 260761 or 01903 260138

Email: enquiries@dfed.co.uk
www.durringtoninfantjunior.co.uk

Homefield Primary School (Special Support Centre)

Special Support Centre for children with an EHC Plan and a diagnosis of autism or social and communication difficulties.

Location: Worthing

Tel: 01903 204141

Email: office@homefield-primary.co.uk
www.homefield-primary.co.uk

London Meed Primary School (Speech and Language Unit)

Special Support Centre for children with severe speech and language difficulties as their primary need. They may also have additional physical, medical, cognitive, social or emotional needs.

Location: Burgess Hill

Tel: 01444 232336

Email: office@londonmeedprimary.co.uk
www.londonmeedprimary.co.uk

Maidenbower Infant School (Special Support Centre)

Special Support Centre for children with autism and/or social communication needs.

Location: Crawley

Tel: 01293 886324

Email: office@maidenbowerinfant.w-sussex.sch.uk
www.maidenbowerinfantschool.org.uk

Maidenbower Junior School (Special Support Centre)

Special Support Centre for children with autism.

Location: Crawley

Tel: 01293 883758

Email:  office@maidenbowerjunior.co.uk
www.maidenbowerjunior.co.uk

Northgate Primary School (Hearing Impaired Unit)

The Orchard is a Special Support Centre within the school for children with hearing impairments.

Location: Crawley

Tel: 01293 526737
Email: office@northgate.w-sussex.sch.uk
www.northgate.w-sussex.sch.uk

Orchards Infant School (Special Support Centre)

Special Support Centre for children who have a significant, specific speech and/or language disorder.

Location: Worthing

Tel: 01903 700234
Email: office@orchardsinfant.school
www.orchardsinfant.com

Orchards Junior School (Special Support Centre)

Specialist unit for pupils who have an EHC Plan where the main need is for a developmental speech and language disorder (DLD).

Location: Worthing

Tel: 01903 520202

Email: enquiries@orchardsjunior.school
www.orchardsjunior.school

Parklands Community Primary School (Special Support Centre)

Special Support Centre (Orchard Class and Forest Class) for pupils with social communication needs who have an EHC Plan.

Location: Chichester

Tel: 01243 788630

Email: office@parklands.school
www.parklands.w-sussex.sch.uk

Portfield Primary Academy (Special Support Centre)

Special Support Centre for pupils with speech, language and communication needs (e.g. a developmental language disorder) who have an Education, Health and Care Plan (EHC Plan).

Location: Chichester

Tel: 01243 783939

Email: office@portfield-tkat.org
www.portfield-tkat.org

River Beach Primary School (Special Support Centre)

Special Support Centre for pupils with a significant hearing loss.

Location: Littlehampton

Tel: 01903 725500

Email: office@riverbeach.w-sussex.sch.uk
www.riverbeach.w-sussex.sch.uk

St Margaret’s C of E Primary School (Special Support Centre)

Special Support Centre for children with an EHC Plan who have physical disabilities.

Location: Crawley

Tel: 01293 521077

Email: office@stmagsifield.co.uk
www.st-margaretsifield.w-sussex.sch.uk

Steyning C of E Primary School (Special Support Centre)

Special Support Centre for children with specific speech and language needs or disorders.

Location: Steyning

Tel: 01903 813420

Email: office@steyningprimary.w-sussex.sch.uk
www.steyningprimary.org.uk

Three Bridges Primary School (Special Support Centre)

Special Support Centre for children with specific speech and language difficulties.

Location: Crawley

Tel: 01293 524076

Email: office@tbps.org.uk
www.threebridgesprimaryschool.co.uk

West Park C of E Primary School (Special Support Centre)

Special Support Centre for children with physical disabilities and ‘communication and interaction needs’.

Location: Worthing

Tel: 01903 243099

Email: office@westparksch.co.uk
www.westpark.w-sussex.sch.uk

SPECIAL SUPPORT CENTRES IN MAINSTREAM SECONDARY

Please note that some special schools and Special Support Centres in mainstream schools have provision through to 18 or 19 years. They are listed in this directory and marked with a #.

The Angmering School# (Lavinia Norfolk Centre)

Secondary school for students aged 11-18. The Lavinia Norfolk Centre supports students with a physical, medical or sensory impairment (visual/hearing).

Location: Angmering

Tel: 01903 772351

Email: office@theangmeringschool.co.uk
www.angmeringschool.co.uk/home/parents/the-lavinia-norfolk-centre

Felpham Community College# (Student Support Centre)

Location: Bognor Regis

Tel: 01243 826511

Email: fcc@felpham.org.uk
www.felpham.com

Hazelwick School# (Sensory Support Centre)

Caters for young people aged 11-19. The Sensory Support Centre is for deaf students who have an EHC Plan that indicates they need to have specialist support and access to a teacher of the deaf.

Location: Crawley

Tel: 01293 403344

Email: office@hazelwick.org.uk
www.hazelwick.org

Oriel High School# (Special Support Centre)

Special Support Centre for children with severe, specific learning difficulties and/or a developmental language disorder or delay.

Location: Crawley

Tel: 01293 880350

Email: office@oriel.w-sussex.sch.uk
www.oriel.w-sussex.sch.uk

The Littlehampton Academy# (The Scott Centre)

Secondary school and sixth form with a Special Support Centre. The Scott Centre offers places to students with an EHC Plan for autism spectrum condition or semantic pragmatic disorder.

Location: Littlehampton

Tel: 01903 711120

Email: office@tla.woodard.co.uk
www.tla.woodard.co.uk

The Regis School# (Special Support Centre)

Location: Bognor Regis

Tel: 01243 871010

Email: enquiries@theregisschool.co.uk
www.theregisschool.co.uk

Thomas Bennett Community College# (Special Support Centre)

Secondary school for young people aged 11-18. Has a Special Support Centre for children with autism.

Location: Crawley

Tel: 01293 526255

Email: admin@thomasbennett-tkat.org
www.thomasbennett-tkat.org

Warden Park Secondary Academy (Additional Learning Needs)

Special Support Centre for children with severe, specific learning difficulties, speech and language needs and additional learning needs.

Location: Cuckfield

Tel: 01444 457881
Email: admin@wardenpark.co.uk
www.wardenpark.co.uk

Worthing High School (Special Support Centre)

Caters for young people aged 11-16 with social communication as their primary area of need.
Location: Worthing
Tel: 01903 237864
Email: office@worthinghigh.net
www.worthinghigh.net

STATE-MAINTAINED SPECIAL SCHOOLS

Brantridge School

For boys aged 6-12 with social, emotional and mental health (SEMH) difficulties and Autistic Spectrum Conditions (ASCs).

Location: Haywards Heath

Tel: 01444 400228Email:
schooloffice@brantridge-school.co.uk
https://brantridgeschool.org

Cornfield School

For boys and girls aged 8-16 who have social, emotional and/or behavioural difficulties.

Location: Littlehampton

Tel: 01903 731277

Email: office@cornfieldschool.org.uk
https://cornfieldschool.org.uk

Fordwater School#

Co-educational school for 2-19-year-olds with severe and complex learning needs.

Location: Chichester

Tel: 01243 782475

Email: office@fordwatersch.co.uk
www.fordwatersch.co.uk

Herons Dale Primary School

Community special school for pupils aged 4-11 years with a wide range of learning difficulties and associated special needs.

Location: Shoreham-by-Sea

Tel: 01273 596904

Email: office@heronsdale.co.uk
https://heronsdale.co.uk

Littlegreen Academy

For boys aged 7-16 who have social, emotional and mental health needs. Many children also have a range of additional needs including autism, ADHD, OCD, anxiety, dyslexia and speech and language delay.

Location: Chichester

Tel: 023 9263 1259

Email: admin@littlegreenacademy.info
www.littlegreenacademy.info

Manor Green College#

School for children and young adults between the ages of 11 and 19 who have a wide range of learning difficulties and other complex needs.

Location: Crawley

Tel: 01293 520351

Email: office@mgcollege.co.uk
www.manorgreen-college.w-sussex.sch.uk

Manor Green Primary School

Caters for pupils aged 2-11 with learning difficulties and additional needs.

Location: Crawley

Tel: 01293 526873

Email: office@mgprimary.co.uk
www.mgprimary.co.uk

Oak Grove College#

Oak Grove College is a special school for 11-16-year-olds and a complex needs college for 16-19-year-olds with a wide range of learning needs and disabilities. All students must have an EHC Plan.

Location: Worthing

Tel: 01903 708870

Email: office@oakgrovecollege.org.uk
https://oakgrovecollege.org.uk

Palatine Primary School

Primary school for children aged 4-11 with complex learning needs.

Location: Worthing

Tel: 01903 242835

Email: office@palatineschool.org
https://palatineschool.org

Queen Elizabeth II Silver Jubilee School#

Caters for 2-19-year-olds with severe or profound and multiple learning difficulties or complex needs.

Location: Horsham

Tel: 01403 266215

Email: office@qe2school.co.uk
www.queenelizabeth2.w-sussex.sch.uk

St Anthony’s School

Community special school for 5-16-year-olds with moderate learning difficulties and additional barriers to learning.

Location: Chichester

Tel: 01243 785965

Email: schooloffice@st-ants.org
www.st-ants.org

Woodlands Meed#

Special needs school and college for children and young people aged 2-19 with a wide range of learning needs and disabilities.

Location: Burgess Hill

Tel: 01444 244133
Email: office@woodlandsmeed.co.uk
www.woodlandsmeed.co.uk

INDEPENDENT AND SECTION 41 SPECIAL SCHOOLS

You can find a list of all independent schools and special post-16 institutions for children with special educational needs or disabilities (SEND) approved under Section 41 of the Children and Families Act 2014 in England and Wales at
www.gov.uk/government/publications/independent-special-schools-and-colleges.

Brighton Forward Ltd# (provisional inclusion on Section 41 list at time of publication)

Offers life and work skills and an accreditation programme tailored to meet the needs of post-15 SEND, SEMH and vulnerable young people.

Location: Worthing

Tel: 07535 176079

Location: Shoreham

Tel: 07534 871154

Email: info@brightonforward.co.uk
https://brightonforward.co.uk

Chailey Heritage School# (out-of-county)

A charitable special school for children and young people aged 3-19 with complex physical disabilities, high health needs, sensory impairments and associated communication and learning difficulties.

Location: North Chailey

Tel: 01825 724444

Email: office@chf.org.uk
www.chf.org.uk/school

Courtlands Independent Special School

A new special school for children aged 11-14 with a range of special educational needs.

Location: Worthing

Tel: 01903 255900

Email: admin@courtlands-school.co.uk
www.courtlands-school.co.uk

Farney Close School Ltd#

A mixed day and term time residential school for children aged 9-18 with social, emotional and behavioural difficulties, Asperger’s, autism (challenging behaviours being primary need), moderate learning difficulties, dyslexia or speech and language difficulties.

Location: Haywards Heath

Tel: 01444 881811

Email: info@farneyclose.co.uk
www.farneyclose.co.uk

Hambrook School#

A SEND education provision specialising in working with children and young adults aged 5-18 with autism and other complex learning needs.

Location: Burgess Hill

Tel: 01444 220210

Email: info@hambrookschool.co.uk
www.hambrookschool.co.uk

Ingfield Manor School#

A day and weekly boarding school for children aged 3-19 with neurological motor impairments such as cerebral palsy and associated medical and sensory needs.

Location: Billingshurst

Tel: 01403 782294

Email: Ingfield.manor@ambitoeducation.co.uk
www.ingfieldmanorschool.co.uk

LVS Hassocks#

Independent school for young people aged 11-19 with a diagnosis of autism.

Location: Sayers Common

Tel: 01273 832901

Email: info@lvs-hassocks.org.uk
www.lvs-hassocks.org.uk

Manor House School# (previously Hillcrest Manor House School)

Special school catering for boys and girls aged 5-18 with social, emotional and mental health needs.

Location: Slinfold

Tel: 01403 790939

Email: manorhouse@acornmanorhouseschool.co.uk
www.acornmanorhouseschool.co.uk

Muntham House School#

Residential and day school for boys aged 5-18 that specialises in pupils with autism, ADHD, trauma, social, emotional and mental health and other SEND conditions.

Location: Barns Green, Horsham

Tel: 01403 730302

Email: office@muntham.org.uk
www.muntham.org.uk

New Barn School#

School for academically able students aged 7-19 with a primary diagnosis of ASC and associated needs including anxiety, social communication difficulties and sensory processing difficulties. They have a residential home attached to the school with space for four students.

Location: Broadbridge Heath

Tel: 01403 289606

Email: info@treehouseeducare.co.uk
www.newbarnschool.co.uk

Philpots Manor School#

Day school for children and young people aged 7-19 who have a range of social, emotional, behavioural and mental health needs and social communication difficulties.

Location: West Hoathly

Tel: 01342 810268

Email: info@philpotsmanorschool.co.uk
https://philpotsmanorschool.co.uk

Seadown School

For children and young people aged 6-16 with a range of needs including SEMH (social, emotional and mental health), autism, ADHD and dyslexia.

Location: Worthing

Tel: 01903 608750

Email: office@seadownschool.co.uk
www.seadownschool.co.uk

Slindon College#

Independent day and boarding specialist school for boys aged 8-18 with a wide range of Specific Learning Difficulties (SpLD) including (but not limited to): literacy and numeracy difficulties; speech, language and communication difficulties; ADHD, Autism Spectrum Disorder (ASD) and dyspraxia.

Location: Slindon

Tel: 01243 814320

Email via website or registrar@slindoncollege.co.uk
www.slindoncollege.co.uk

Springboard Education#

For children and young people aged 9-18 who may have learning difficulties and/or low attainment as a result of their Social, Emotional and Mental Health (SEMH) needs.

Location: Lancing

Tel: 01903 605980

Email: office@springboardeducation.co.uk
www.springboardeducation.co.uk

St Piers School# (out of county)

A non-maintained residential special school covering primary, secondary and sixth form for pupils aged 5-19 with epilepsy, autism, severe learning difficulties, speech, language and communication needs and sensory and/or physical needs.

Location: Lingfield

Tel: 01342 831348

Email: education@youngepilepsy.org.uk
www.stpiers.org.uk/st-piers-school

The Amicus Community

Day and residential school for specialist therapeutic care and treatment for children aged 5-16 (no older than 11 on admission) who are vulnerable and have experienced trauma.

Location: Arundel

Tel: 01243 544107

Email: info@theamicuscommunity.com
www.theamicuscommunity.com

FURTHER AND HIGHER EDUCATION SETTINGS

FURTHER EDUCATION COLLEGES

* The Additional Support Teams in these colleges (marked with *) can help by providing in-class or out-of-class support for literacy, numeracy and study skills, working with a Learning Support Assistant (LSA) in class or a Communication Support Worker (CSW), a range of adaptive equipment and software for students with hearing or visual impairments and facilities such as ramps, hoists, lifts and specialised toilets are available.

Brighton Metropolitan College (out of county)*

Location: Brighton

Tel: 01273 667788

Email: enquiries-brighton@gbmc.ac.uk
www.brightonmet.ac.uk

Chichester College (including Brinsbury Campus, Pulborough)*

Location: Chichester

Tel: 01243 786321

Email: info@chichester.ac.uk
www.chichester.ac.uk

Crawley College*

Location: Crawley

Tel: 01293 442200

Email: info@crawley.ac.uk
www.crawley.ac.uk

Haywards Heath College*

Location: Haywards Heath

Tel: 01444 711900

Email: info@haywardsheath.ac.uk
www.haywardsheath.ac.uk

Northbrook College*

Location: Worthing and Shoreham

Tel: 01903 273060

Email: enquiries-worthing@gbmc.ac.uk
www.northbrook.ac.uk

Plumpton College (out of county)

Practical courses including horticulture, floristry and landscaping. Also offers apprenticeships and supported internships.

Location: Plumpton

Tel: 01273 890454
www.plumpton.ac.uk

St Piers College (out of county)

A unique residential and day college for students aged 19–25 with epilepsy, autism, severe learning difficulties and complex needs.

Location: Lingfield

Tel: 01342 831348

Email: education@youngepilepsy.org.uk
www.stpiers.org.uk/st-piers-college

The College of Richard Collyer

Location: Horsham

Tel: 01403 210822

Email: admin@collyers.ac.uk
www.collyers.ac.uk

Worthing College*

Location: Worthing

Tel: 01903 275755

Email: info@worthing.ac.uk
www.worthing.ac.uk

OTHER OPTIONS (Alternative Provision)

You can find a list of approved alternative provision on the Local Offer at
www.westsussex.gov.uk/local-offer/information/education/independent-alternative-provision-iap

West Sussex Alternative Provision College (WSAPC)

For young people (up to Year 11 only) who have been permanently excluded, are at risk of exclusion or cannot attend school for medical reasons. Centres are located across the county – see the website for more information.

www.apcollege.co.uk

LOCAL UNIVERSITIES

University of Brighton

Tel (switchboard): 01273 600900

Email: admissions@brighton.ac.uk
www.brighton.ac.uk

University of Chichester

Tel: 01243 816000

Email: admissions@chi.ac.uk
www.chi.ac.uk

University of Sussex

Location: Falmer, Brighton

Tel: 01273 606755

Email: information@sussex.ac.uk
www.sussex.ac.uk

Section four: Directories

Grantmaking directory

NB: If you wish to apply for a grant, check the organisation’s website for detailed information on eligibility criteria and whether to apply by online form, email or phone. Some grants require a professional to refer you or support your application, while others have restrictions on how the money can be used.

3HFoundation

A grant programme assisting families on a low income who have a family member with disabilities to organise their own UK holiday. The grants are given for the accommodation part of the holiday and are paid directly to the chosen venue. Carers can also be awarded a grant for a holiday away from their caring role. Subsidised group holidays are organised by 3H and they also run a Carer Programme.

Tel: 01892 860207

Email: info@the3hfoundation.org.uk
https://the3hfoundation.org.uk

Ataxia UK

Helps people with ataxia apply for grants to fund things such as equipment, home adaptations and independence. For further information, visit the website.

Tel: 0800 995 6037

Email: help@ataxia.org.uk
www.ataxia.org.uk

Brittle Bone Society

Provides grants for wheelchairs or essential specialist equipment for people with osteogenesis imperfecta (brittle bone disease). Initial enquiries should be made by phone or email. Grant applications must include a letter of support from a relevant professional such as an occupational therapist, for example.

Tel: 01382 204446

Email: bbs@brittlebone.org
www.brittlebone.org

Bruce Wake Charitable Trust

Grants are awarded towards the provision of sport and leisure activities for people with physical disabilities. Applications on behalf of individuals must be made through a charitable organisation or equivalent recognised body. Guidelines on how to apply are available on the website.

Tel: 01572 491100

Email: info@brucewaketrust.co.uk
www.brucewaketrust.co.uk

Buttle UK

Tailored grants for children and young people who have experienced a crisis that has recently had a significant and enduring impact on their social and emotional wellbeing and educational engagement. Allocates grants for boarding school fees in cases where home is ‘chaotic’ or children are ‘on the edge of care’. See website for eligibility guide.

Tel: 020 7828 7311

Email: info@buttleuk.org
www.buttleuk.org

Carer Health and Wellbeing Fund

WSCC offers grants to enable carers to enhance their health and wellbeing. You can apply via Carers Support West Sussex.

Tel: 0300 028 8888

Email: info@carerssupport.org.uk
www.carerssupport.org.uk

Caudwell Children

Provides funding towards equipment, treatment and therapies for children with various disabilities and illnesses in the UK, and holidays for children with life-threatening conditions.

Tel: 0345 300 1348

Email: charity@caudwellchildren.com
www.caudwellchildren.com

Cheyne Charity for Children with Cerebral Palsy

Provides grants to children and young people with cerebral palsy towards the cost of essential equipment and respite breaks. It’s helpful if the application is supported by a professional (e.g. a physiotherapist or doctor).

Tel: 01444 450901
www.cheynecharity.org

Child Brain Injury Trust (CBIT)

Provides small grants, up to a maximum of £125, to any family supported by the trust to reduce isolation and enable families to participate in social activities. The grant can also be used for equipment and items that make life more comfortable for families.

Tel: 01869 341075

Email: info@cbituk.org
https://childbraininjurytrust.org.uk

Children Today

Grants towards specialised equipment, e.g. electric wheelchairs, walking aids, trikes, lifting aids, adapted car seats, sensory equipment and posturepedic sleep equipment. For further information, call the charity on the number below.

Tel: 01244 335622

Email: info@childrentoday.org.uk
www.childrentoday.org.uk

Disabled Facilities Grant

Local council funding towards the costs of adapting the home and/or to provide better facilities within it. Grants are means tested, unless for a child under 18. The maximum grant available is £30,000. For more information, contact the housing or environmental health department of your local district council.

www.gov.uk/disabled-facilities-grants

Dreams Come True

Provides funding and support to help children and young people aged 2-18 who have a serious or life-limiting medical condition to fulfil their dreams. Referrals must be made by a professional.

Tel: 01428 726330

Email: info@dreamscometrue.uk.com
www.dreamscometrue.uk.com

Family Action

Welfare and educational grants to families on benefits or low incomes. See the website for details.

Tel: 0207 254 6251

Email: grants.enquiry@family-action.org.uk
www.family-action.org.uk

Family Fund

Grants to families with a disabled child or young person aged 0-17 who is eligible for Universal Credit, Child Tax Credit, Working Tax Credit, Income-Based Jobseekers Allowance, Income-Related Employment Support Allowance, Income Support, Housing Benefit or Pension Credit. Grants can be used for washing machines, cookers, beds, outings and holidays or specialist equipment, for example.

Tel: 01904 550055

Email: info@familyfund.org.uk
www.familyfund.org.uk

Family Holiday Charity

Funding to enable families on low incomes with children under 18 to have a holiday. Applications must be made via a professional such as a social worker or GP.

Tel: 0203 1170650

Email: hello@familyholidaycharity.org.uk
https://familyholidaycharity.org.uk

Florence Nightingale Aid in Sickness Trust

Grants to people who are sick, in poor health or disabled and require medical services and/or equipment to improve their quality of life. For example, for convalescent and respite care: medical aids, household aids, sensory equipment, communication aids and fridges for essential drug storage. Applications must have a supporting letter from a health care professional or social worker, and for a grant to be considered it must be confirmed that funding can’t be provided by the local authority or NHS.

Tel: 020 7998 8817

Email: lisa.hungerford@fnaist.org.uk
http://fnaist.org.uk

Gardner’s Trust for the Blind

Grants towards education, training and household maintenance for people who are blind or partially sighted. Applications must be made via a professional such as a teacher, GP or social worker. Criteria and a link to the application form are available at the website below.

Tel: 020 7253 3757
https://grants-search.turn2us.org.uk/grant/gardners-trust-for-the-blind-12805

Guide Dogs – children and young people’s services

Grants for children and young people aged 18 and under towards technology or sensory items.

Tel: 0800 781 1444

Email: information@guidedogs.org.uk
www.guidedogs.org.uk

Happy Days Children’s Charity

Grants for young people aged 3-17 with learning difficulties, physical or mental disabilities or emotional challenges and those with acute, chronic or life-limiting illnesses, bereaved children and those who are young carers to go towards the cost of days out and holidays. See website for full details.

Tel: 01462 530710

Email: enquiries@happydayscharity.org
www.happydayscharity.org

Joseph Patrick Trust

Grants to children and adults with muscular dystrophy or a related neuromuscular condition for powered wheelchairs, mobility scooters and adaptations to them.

Tel: 0207 803 4811

Email: jptgrants@musculardystrophyuk.org
www.musculardystrophyuk.org/support/information/housing-adaptations-and-equipment/jpt

League of Helping Hand – Linking Help with Hope

Grants for people on a very low income who receive the appropriate welfare benefits and have exhausted all other funding sources including statutory funding and occupational, local and specialist charities. We help those with physical and diagnosed mental health conditions or learning disabilities and people caring for an adult or child with a disability. Application forms (available on the website) must be completed by an official agency such as social services.

Tel: 01444 236099

Email: secretary@lhh.org.uk
www.lhh.org.uk

Lifeline 4 Kids

Provides specialist equipment such as electric wheelchairs, mobility aids and assistive technology for children with disabilities aged 0-18. See the website for how to apply.

Email: appeals@lifeline4kids.org
www.lifeline4kids.org/application

Make-a-Wish Foundation

Grants wishes for children aged 3-17 who have a critical illness.

Tel: 01276 405060

Email: info@makeawish.org.uk
www.make-a-wish.org.uk

Margaret Champney Rest and Holiday Fund

Small grants for carers to take a short break or holiday. Applications must be made via a social worker, community nurse or other relevant professional – see the website for details.

Tel: 01394 388746

Email: info@ogilviecharities.org.uk
www.ogilviecharities.org.uk

Miracles

Crisis grants for families living in poverty who have children with a life-changing or life-limiting diagnosis. Grants are awarded on a 24-hour turnaround for families who have nowhere else to turn, to cover hospital travel and accommodation, food, clothing, additional medical equipment or help to halt evictions, reconnect house utilities, home medical needs and house adaptations. They also offer respite breaks to children being treated for serious illnesses. Applications must be made by a social worker or other professional working with the family.

Tel: 01903 775673

Email: miraclesthecharity@gmail.com
www.miraclesthecharity.org

Mobility Trust

Provides powered wheelchairs and scooters to disabled people who cannot obtain one from statutory sources or other charitable means or purchase the equipment themselves. See website for eligibility form.

Tel: 0118 984 2588

Email: mobility@mobilitytrust.org.uk
https://mobilitytrust.org.uk

Motability

Grants towards the costs of purchasing a car and adaptations such as swivel seats, hand controls, wheelchair accessible vehicles and up to 40 hours of driving lessons.

Tel: 0300 456 4566
www.motability.org.uk
my AFK

Funding for mobility equipment for children and young people under 25.

Tel: 020 8347 8111

Email: info@afkcharity.org
www.my-afk.org/apply-for-mobility-equipment

Newlife – the Charity for Disabled Children

Grants towards equipment such as beds, buggies, wheelchairs, seating systems and more for disabled children under 19. To find out if you are eligible, contact the care services team on the number below.

Tel: 0800 902 0095

Email: nurse@newlifecharity.co.uk
https://newlifecharity.co.uk

React

Grants towards specialist equipment, travel and hospital expenses, respite breaks and end of life support for families on a low income caring for a child with a life-threatening or life-limiting illness. See the website or call for more details.

Tel: 020 8940 2575

Email: react@reactcharity.org
https://reactcharity.org

Residential Bursary Fund and Residential Support Scheme

There may be help with the cost of accommodation from the Residential Bursary Fund (RBF) if you meet certain criteria – residency, aged 16-19 on a certain date, the course must be full time at a specialist residential centre and too far away to travel to each day.

www.gov.uk/residential-support-scheme/residential-bursary-fund

There may be help with the cost of accommodation from the Residential Support Scheme (RSS) if you meet certain criteria – residency, aged 16-19 on a certain date, not on housing benefit, having a maximum household income of around £30,000 and studying for your first level 2 or level 3 qualification. The course must be full time but not at a specialist residential centre; it must also be more than 15 miles or a two-hour round trip from your home.

www.gov.uk/residential-support-scheme/residential-support-scheme

Sequal Trust

Provides electronic communication aids for children and adults who are non-verbal or have learning and communication difficulties. By working with their SALT, they find the most suitable device for a person.

Tel: 01691 624222

Email: info@thesequaltrust.org.uk
www.thesequaltrust.org.uk

Starlight Children’s Foundation

Grants personalised wishes to children and young people aged 3-17 with life-threatening or life-shortening illnesses. Nominate a child by completing the wish application form on the website.

Tel: 020 7262 2881

Email: talktous@starlight.org.uk
www.starlight.org.uk

Sullivan’s Heroes

Supports families seeking to raise funds for home adaptations to meet the needs of a disabled child where the costs of the project exceed that of the government’s Disabled Facilities Grant (DFG). Also provides grants to help meet the costs of building projects.

Email: hello@sullivansheroes.org
www.sullivansheroes.org
www.facebook.com/sullivansheroes

Sussex Snowdrop Trust

Financial support for families of children with life-threatening illnesses that can be used for household bills, specialist equipment, computers and transport costs. See the website for eligibility and catchment area.

Tel: 01243 572433

Email: office@snowdroptrust.com
www.thesussexsnowdroptrust.com

Talisman Charitable Trust

Grants to help with education, health, housing and disabilities for UK individuals described as ‘going short’. Applications should be made via a charitable organisation, local authority or Citizens Advice. See the website for guidelines.

www.talismancharity.org

Tourette’s Action

Grants of up to £500 for equipment to support people with Tourette’s syndrome in their everyday lives. See website for application form and guidelines.

Tel: 0300 777 8427
www.tourettes-action.org.uk

Tree of Hope Children’s Charity

Support and resources to help families fundraise for their disabled or sick children. Families launching their campaign through the charity can access Gift Aid, corporate donations, trusts and grants.

Tel: 01892 535525

Email: info@treeofhope.org.uk
www.treeofhope.org.uk

Variety, The Children’s Charity

Grants to disabled children and their families for specialist equipment that isn’t available through statutory services, such as mobility equipment, hoists and communication aids. Full guidelines and application forms are available on the website, or phone/email the grants programme manager for more information.

Tel: 020 7428 8120

Email: grants@variety.org.uk
www.variety.org.uk

Whizz-Kidz

Provides mobility equipment to children under 18 with a disability that permanently affects their mobility who have not been able to get the required equipment or funding through the NHS.

Tel: 0800 151 3350

Email: kidzservices@whizz-kidz.org.uk
www.whizz-kidz.org.uk

Other sources of support

Lions Clubs, Masonic Lodges, Rotary Clubs, the Round Table and Soroptimists are known to be active in their local communities supporting individuals and families in need. You can find your local branch by searching for the organisation and ‘West Sussex’, or your town.

https://lionsclubs.co/Public
www.rotarygbi.org
www.roundtable.co.uk
https://sigbi.org
https://sussexmasons.org.uk

We would also recommend Turn2us, which has an online directory of grants and financial support at
www.turn2us.org.uk.

Section four: Directories

Disability jargon-buster

Our jargon-buster lists words, acronyms and phrases that may be new to you but are often used in health, social care and education. Although it’s not completely comprehensive, we hope that it will help you to understand some of the language that’s most commonly used by professionals.

AAC (Augmentative and Alternative Communication) – communication that supports or replaces the spoken word. Methods vary from low-tech picture cards to high-tech electronic speech-generating devices.

ABI (Acquired Brain Injury) – medical term referring to an injury to the brain occurring after birth.

Academy – a school that is self-governing and funded directly from central government, not the local authority, giving it more freedom over its budget, how it structures the school day and so on.

Accessibility Plan (schools and colleges) – under the Equality Act 2010, all schools are required to have an accessibility plan. It must support disabled pupils in accessing and benefiting from education, facilities and services.

Accessible housing – homes with adaptations such as ramps, handrails, wide doors, raised electric sockets or wet rooms to make them accessible to disabled people.

Access and Participation Plan (APP) – sets out how a higher education provider will sustain or improve access, student success and progression.

Access to Work – a grant providing practical support to enable disabled people to start and/or stay in work. Support can include help with transport costs, equipment needed for the workplace, a communicator at interviews or a support worker to help you in the workplace.

Acupuncture – complementary therapy where fine needles are inserted into points on the body to help a range of health conditions.

Acute – describes the rapid onset of an illness.

ADL (Activities for Daily Living) – everyday tasks like eating, bathing, dressing, moving around and so on.

Adults’ CarePoint – the initial point of contact for help from social care for adults in West Sussex.

Advice – term used for reports provided by both parents and professionals as part of an Education, Health and Care Needs Assessment.

Advocacy – independent support representing and acting on behalf of an individual, family or group. Often used to support people with learning disabilities or other SEND.

AFO (Ankle Foot Orthosis) – splint worn on the lower leg to support and straighten muscles and correct their function.

Ambulatory – medical term relating to the ability to walk.

Annual review – yearly progress meeting between teachers, parents and children for a child who has an EHC Plan.

Appointee – a parent, friend or professional who acts on behalf of someone to manage their benefits.

Apprenticeship – work-based schemes where a person works with experienced staff and undertakes study to gain job-specific skills that lead to vocational qualifications. Open to over-16s who are not in full-time education.

AT (Assistive Technology) – system or device designed to increase independence for disabled people, e.g. specialist computer software.

Audiologist – clinician who provides assessment, diagnosis and rehabilitation of hearing and balance problems. Includes interventions such as hearing aids to reduce barriers to communication created by hearing loss.

Blue Badge – parking permit that allows eligible disabled people or their carers to park near to where they need to go.

Bobath Therapy – combination of physiotherapy, occupational therapy and speech and language therapy. Aims to maximise movement, communication and other functions.

Botox (Botulinum Toxin A) – a powerful toxin used in small doses to provide safe and effective relief from tight muscles. Commonly used in the treatment of cerebral palsy and dystonia.

BSL (British Sign Language) – a visual form of communication using hands, facial expressions and body language, mainly used by people who are deaf or hearing impaired.

BTEC – vocational qualifications, often studied by 16-19-year-olds, that are being phased out.

Buddy Scheme – pairs people with and without disabilities so that a disabled young person can have peer support and increase their independence.

Bursary – a sum of money given to a person to help them to study.

CAMHS (Children and Adolescent Mental Health Services) – mental health support for children and young  people under 18 and their families.

Care Package – the services and support provided following assessment by social services.

Carer’s Allowance – a taxable benefit for someone over 16 who spends at least 35 hours per week caring for a disabled person and earns less than the earnings threshold (equivalent to 16 hours at national minimum wage) per week after taxes and allowable expenses.

Carer’s Assessment – an evaluation of a carer’s needs carried out by social care in order to decide what help is needed and available.

CBT (Cognitive Behavioural Therapy) – therapies that involve trying to change the way a person thinks and behaves. Often used in treating depression, anxiety disorders, low self-esteem and/or behavioural problems.

Cerebral Visual Impairment (CVI) – a form of visual impairment caused by the brain not being able to process information from the eyes.

Certificate of Vision Impairment (CVI) – a CVI form is issued to a patient assessed by a consultant ophthalmologist as being visually impaired. It will identify whether you are considered sight impaired (partially sighted) or severely sight impaired (blind).

Changing Places Toilet – a larger sized, fully accessible toilet for users who may need support from one or two carers, along with equipment (changing bench and hoist) to help them either use the toilet or have their continence pad changed. A slightly smaller version is known as a Space to Change.

Child Tax Credits – see Legacy benefits.

Child Development Centre (CDC) – multi-purpose clinic housing various children’s health professionals including paediatricians, physiotherapists, occupational therapists and speech and language therapists.

Children’s Community Nursing Team – trained nurses who provide care to children and young people up to the age of 18 outside of hospital.

Chronic – describes an illness or condition that lasts a long time.

Circle of Support – informal group of people (usually family and friends) who meet on a regular basis to help somebody accomplish their personal goals in life. Sometimes used in supporting people with SEND.

Clinical Child Psychologist – a health professional who assesses, diagnoses and treats children and young people with mental health issues. May also offer counselling for families in difficulty.

Cognitive Development – the way children learn to process information, learn language and develop skills in perception, problem solving and so on.

Community Dentist – specialist dental service for people with SEND and other difficulties.

Community Equipment – tools that aid daily living, e.g. wheelchairs, hoists, commodes, beds, eating utensils, raised toilet seats etc.

Community Paediatrician/child health doctor – doctor specialising in the health and development of children.

Conductive Education – method of teaching children with motor disorders such as cerebral palsy that seeks to maximise mobility and independence, and increase self-esteem and social interaction.

Congenital – relating to conditions that are present at birth.

Consultant in rehabilitation medicine – specialist doctor leading a multidisciplinary team in treatment and prevention for people with complex disabilities. Expertise includes wheelchairs, orthotics and assistive technology.

Continence Team – nurse-led team providing a tier-2-targeted specialist continence service to children and young people. Supports families whose children have ongoing difficulties with bladder or bowel control, constipation, withholding and other toileting issues.

Continuing Care – fully funded health care provided in the community to a child or adult with a disability, injury or illness over an extended period of time.

Co-production – an approach to working where parents and professionals  work together in equal partnership to agree outcomes, recommendations, plans, actions and materials. This can happen on an individual level, to plan a child’s support, or at a strategic level to plan and deliver services.

CT (Computerised Tomography) or CAT (Computerised Axial Tomography) scan – creates 3D images of structures inside the body to monitor and diagnose conditions.

Developmental Delay – used when a child meets milestones much later than expected for their age in one or more of: physical, personal and social skills; thinking and learning; speech and communication.

Developmental Disorder – umbrella term for a number of conditions affecting neurological development, such as autism, learning disabilities and global developmental delay.

Developmental Language Disorder (DLD) – identified when a child has problems with language development that continue into school age and beyond, having a significant impact on social interactions or educational progress and occurring in the absence of autism spectrum disorder, intellectual disability and other conditions. This can be difficulties using words and sentences to express meanings, but many children also find understanding of language (receptive language) a challenge.

Differentiation – a teaching approach that recognises the different rates and ways that students learn. Used in the classroom to ensure that they have the best possible chance of learning. Includes adaptations to the National Curriculum if needed.

Direct Payments – funding paid directly to disabled people who have been allocated a personal budget so they can choose and organise their own care or services.

Disability Equality Duty – superseded by Public Sector Equality Duty (PSED), accessibility plans (schools and colleges) and access and participation plans (higher education settings).

Disabled Facilities Grant – local authority grant towards the cost of adapting a home for someone who is disabled.

Disabled Students’ Allowance – a grant to help students with extra costs occurring as a direct result of disability, an ongoing health condition, a mental health condition or a specific learning difficulty.

Disagreement Resolution – an arrangement for resolving disputes between parents of children with SEND and their local authority, school, health or care agency. Must include an independent facilitator provided by the local authority.

Disapplication – removal or lifting of any element of the National Curriculum for a child with SEND.

Discrimination by Association – when a person is treated less favourably because they are linked to someone with a protected characteristic under the Equality Act 2010 (e.g. not employing the mother of a disabled child).

DLA (Disability Living Allowance) – tax-free benefit for disabled children under 16 who need help with personal care and/or mobility.

DSA (Disabled Students’ Allowance) – additional financial help for disabled people who want to study in higher education.

Dual or Multiple Exceptionality (DME) – term used in the UK to describe children who have both high learning potential and a special educational need because of a learning difficulty, neurodivergence or a disability. These can include neurodivergences such as autism, ADHD or dyspraxia; learning difficulties such as dyslexia, dysgraphia and dyscalculia; sensory and speech impairments; or physical disabilities.

Dysphagia – medical term referring to a difficulty with swallowing.

Early Bird – training programme from the National Autistic Society to help parents of children with autism to help their communication, development and social skills.

Early Help assessment – assessment of a child and family to identify needs at an early stage and enable suitable interventions to be put in place to support them.

Education Otherwise Than At/in a School (EOTAS) – if the local authority agrees it would be inappropriate for any required special educational provision to be delivered in a school, it can agree to arrange for it to be delivered somewhere else, e.g. at home. The local authority must arrange and pay for that provision.

Educational Psychologist – works in education, the community and with families to assess children’s learning, wellbeing and development, and to identify difficulties that hinder learning and participation in school and other activities. They might assess a child during an EHC Needs Assessment.

Education Supervision Order – a court-ordered plan made by the inclusion service with a child, parents, school and other agencies to achieve regular school attendance.

EHC Needs Assessment – the process by which children and young people with SEND are assessed for an EHC Plan.

EHC Plan or EHCP (Education, Health and Care Plan) – for children and young people aged up to 25 who need more help in school or college than is normally available through standard special educational needs support. The plan should be drawn up by the local authority in co-production with the young person, their parents and relevant professionals from education, health and social care.

Elective Home Education (EHE) – the term used when parent-carers decide to take full responsibility for the education of their children. This might involve educating them at home themselves, online learning or paying someone else to provide tuition.

Emotionally Based School Avoidance (EBSA) – term used to describe school attendance difficulties due to emotional factors.

Equality Act (2010) – legislation that improves the civil rights of disabled people in relation to education, employment, accessing goods and services, and helps disabled people who rent property and wish to make improvements to their home. Also requires all public bodies to actively promote equality of opportunity for disabled people.

EYFS (Early Years Foundation Stage) – government framework for the learning and development of children from birth to the age of five. All providers of education and care for young children must follow the requirements of the framework.

Feeding tubes – a variety of medical devices, including an ng-tube, g-tube, gj-tube, j-tube and buttons, to allow liquid food to be fed directly into the stomach or intestines, bypassing the mouth and oesophagus. These can be used for many reasons.

Fine Motor Skills – use of smaller muscle groups and hand-eye co-ordination to carry out precise tasks like writing, picking up objects and fastening clothes.

First-tier Tribunal (SEND) – independent national tribunal that hears parents’ and young people’s appeals against local authority decisions about EHC assessments, EHC Plans and claims of disability discrimination against schools.

Further Education (FE) – learning for young people between the ages of 16 and 19. Includes school sixth forms, sixth form colleges and further education (FE) colleges.

Gait – term to describe the way a person walks.

Gaiters – type of splint used to straighten elbows or knees.

Gastrostomy – an artificial surgical opening in the stomach to aid feeding and nutritional support.

GDD (Global Developmental Delay) – term to describe when a child has delayed development in two or more of the following: thinking and learning; personal and social skills; physical; speech and communication.

GP (General Practitioner) – a doctor based in a health centre or practice who treats acute and chronic illnesses and provides preventive care to patients.

Graduated Approach – way of working with children with SEND in education settings that gradually brings in additional support and expertise to support a child’s learning and development, using an ‘assess, plan, do, review’ model.

Gross Motor Skills – use of the large muscles in the body that enable standing, walking, lifting and sitting.

Health Visitors – qualified nurses who work mainly with families who have children under five. They sometimes work with families of older children with SEND.

Hemiplegia – a varying degree of weakness and lack of control on one side of the body, caused by damage to the brain (most often before or around the time of birth).

Higher Education (HE) – learning provided by universities and similar institutions that offer degrees and Higher National Diplomas (HNDs).

Homeopathy – alternative medicine where a person is given highly diluted substances with the aim of ‘triggering the body’s natural system of healing’.

Hospice – provider of specialist care to children who have life-limiting or life-threatening illnesses.

Hypertonia – medical term to describe increased muscle tone and the reduced ability of a muscle to stretch.

Hypotonia – medical term to describe decreased muscle tone, often involving low muscle strength.

Hypoxia – medical term to describe when a person or region of the body is deprived of an adequate oxygen supply.

Inclusion – term commonly used in education to describe the principle by which children with SEND attend school and participate in the curriculum alongside other pupils.

InCo (Inclusion Coordinator) – another name used to describe the role of the SENCO (Special Educational Needs Coordinator).

Kaye Walker – walking frame for children with mobility problems.

Key Stages – the National Curriculum has five phases, which are based on age groups: Key Stage 1 (ages 5-7), Key Stage 2 (7-11), Key Stage 3 (11-14), Key Stage 4 (14-16) and Key Stage 5 (16-18).

Key Worker – education, health or social care professional who acts as a point of contact and source of information and support to children, parents and families. Sometimes known as a ‘lead professional’.

LD (Learning Disability) – term to describe various intellectual and social impairments present from childhood that prevent or hinder a person from understanding, learning or remembering new subjects or skills. Also known as an intellectual disability or cognitive disability.

LDD (Learning Difficulties and Disabilities) – sometimes used by schools and colleges to refer to all learning differences that require special educational support.

Legacy Benefit – Universal Credit is an integrated means-tested benefit for people in or out of work. It is replacing Child Tax Credits, Employment and Support Allowance (ESA), Housing Benefit, Income Support, Jobseeker’s Allowance (JSA) and Working Tax Credits.

LSA (Learning Support Assistant) – a member of school staff who provides individual or small group support in the classroom to children with SEND.

Mainstream school – ordinary or community school managed by the local authority.

Makaton – a communication system that combines manual signs and speech. Useful for children with learning disabilities and speech/language difficulties to help them understand and communicate.

Mediation – a service commissioned by local authorities to help settle disagreements between parents or young people and local authorities over EHC needs assessments and plans before considering tribunal.

Medical Model of Disability – a view of disability in which people are defined by their impairments. Emphasises the problem, not the person, and the need for medical intervention or correction of the problem. Often used in comparison with the social model of disability.

Mental capacity – if someone has ‘mental capacity’, they have the right to make their own decisions, whether others agree with those choices or not. This right is protected in law by the Mental Capacity Act 2005.

Mild Learning Disability – someone with this diagnosis is usually able to hold a conversation and communicate most of their needs and wishes. They may need some support to understand abstract or complex ideas. These people are often independent in caring for themselves and doing many everyday tasks. They usually have some basic reading and writing skills. People with a mild learning disability often go undiagnosed.

MLD (Moderate Learning Disability) – this diagnosis may be given if a person has problems acquiring literacy and language skills. Often there are associated problems with speech and communication, and social skills.

Modification – alteration to a programme of study or activity designed to give disabled students better access to that element of the curriculum.

MRI (Magnetic Resonance Imaging) scan – scan using powerful magnetic fields and radio waves to produce detailed images of the inside of the body. Used to diagnose health conditions affecting bodily organs, tissue and bones.

MSI (Multi-Sensory Impairment) – when a person has a combination of sight and hearing loss.

Multi-disciplinary – when professionals from a number of specialities are involved in planning, assessment, treatment and/or meetings.

Muscle tone – the amount of tension or resistance to movement in a muscle. Involved in movement, posture and so on.

Music Therapy – form of therapy that is often used to help communicate and build relationships with people through playing, singing and listening to music.

National Curriculum – covers the learning of all children aged 5-16 in state schools in England. Includes the subjects children should learn, the knowledge, skills and understanding they should have in each subject and targets to measure progress.

Needs Assessment – process carried out by social workers to identify the needs of both the child and their family, in order to assess their eligibility for support from social care services.

Neurodivergent – Neurodiversity is the idea that everyone has different brains and that this diversity is natural. It’s a word that can be used to talk about people with a variety of conditions, e.g. autism, ADHD, dyslexia or mental health conditions.

NT (Neurotypical) – shorthand for ‘neurologically typical’. A neurotypical person is an individual who thinks, perceives and behaves in ways that are considered the norm by the general population. Institutions such as schools and places of employment are typically designed to accommodate people who fit into these norms.

NVQ (National Vocational Qualification) – can be studied for by people in employment, or by school and college students who are on a work placement or working part time. NVQs are gradually being phased out and replaced by QCF (Qualifications and Credit Framework) awards, certificates and diplomas.

Ofsted (Office for Standards in Education, Children’s Services and Skills) – regulates and inspects childcare and educational services. Provides online reports on childcare providers and schools.

Ophthalmologist – a medically trained doctor with specialist skills in the diagnosis, treatment and prevention of eye conditions.

Optometrist – a health care professional who performs eye tests and prescribes corrective lenses or glasses to those who need them.

Orthoptist – a health care professional who investigates, diagnoses and treats difficulties with binocular vision and problems with eye movement, including double vision, reduced vision and squints.

Orthotist – a health care professional who makes and fits specialist braces, splints and footwear to support weak joints or muscles.

Osteopathy – the detection, treatment and prevention of health problems by moving, massaging and stretching muscles and joints.

OT (Occupational Therapist) – a health care professional who works with people to improve their skills in carrying out everyday activities.

Paediatrician – a specialist doctor who manages conditions affecting babies, children and young people.

Palliative Care – treatment to improve the quality of life of anyone facing a life-threatening condition. It includes physical, emotional and spiritual care.

PALS (Patient Advice and Liaison Service) – provides information on the NHS and investigates complaints made by patients.

Paraplegia – impairment in motor or sensory functions in the lower half of the body, resulting in complete or partial paralysis in both legs. Usually due to injury or disease of the spinal cord.

Parent-carer – describes and recognises the dual roles of parents of children with SEND who have caring responsibilities above and beyond other parents.

Parent Participation – the active involvement of parent-carers in the planning of services for children and young people with SEND and their families.

Passported benefits – benefits you can get if your child receives DLA. They include Carer’s Allowance, extra payments to top up earned income, and top-ups on your own benefits such as Universal Credit.

Pastoral Care – provision by schools that focuses on the personal, social and emotional needs of pupils.

Pastoral Support Plan – school strategy to help children improve their social, emotional and behavioural skills. Often used with children at risk of exclusion.

PECS (Picture Exchange Communication System) – picture-based system commonly used by pre-verbal or non-verbal children who are on the autistic spectrum or have a learning disability.

Personal Assistant (PA) – provides paid support and care to disabled children and adults for activities such as shopping, leisure activities, washing and personal care.

Personal Budgets – an amount of money identified by the local authority to deliver care and support. Gives disabled people and their carers flexibility to choose which services and support to use.

Personalisation – the provision of tailored care and support to people based on their individual needs and the choices they make about how they want to live their lives.

Person-centred Planning – approach where people with SEND and their families are equal partners with professionals when planning out their life and the support they need to achieve their goals.

Physiotherapist – a health care professional who helps people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice.

PIP (Personal Independence Payment) – a government benefit for people aged 16 and over. Intended to help with some of the extra costs caused by a long-term health condition or disability.

Play Therapy – play that helps children understand difficult life experiences and feelings to reduce their anxiety, improve self-esteem and help manage emotions and behaviour.

PMLD (Profound and Multiple Learning Disabilities) – used when a person has a severe learning disability and other physical disabilities and/or severe medical conditions. Someone who has PMLD may have difficulties with hearing, seeing, speaking and moving, and will need a high level of support.

Portage – an educational service for preschool children with SEND and their families.

Primitive Reflexes – newborn babies have a set of involuntary movements and actions, such as the Moro or ‘startle’ reflex and the sucking reflex. They should be inhibited by the age of one, as part of a child’s normal development.

Prognosis – medical term to describe the likely progress and outcome of an illness, condition or disability.

Progressive – term used to refer to an illness or condition that generally gets worse over time.

Provision Map – a brief document setting out how a school will support a child with SEND.

PRU (Pupil Referral Unit) – also known as ‘alternative provision’, these are specialist schools run by local authorities for children who have been excluded, have health issues or are otherwise unable to attend a mainstream or special school. QCF (Qualifications and Credit Framework) provides awards, certificates and diplomas, and the system gives learners the ability to get qualifications at their own pace.

Psychiatrist – a doctor who specialises in diagnosing and treating people with mental health issues.

Public Sector Equality Duty (PSED) – a statutory duty on listed public authorities and other bodies carrying out public functions. It ensures that they consider how their policies, programmes and services will affect people with different protected characteristics. The duty supports good decision-making by helping decision-makers understand how their activities affect different people. It also requires them to monitor the actual impact of the things they do, e.g. by keeping under review how different groups of pupils are performing at school and taking action if some pupils with protected characteristics need more support than others.

Quadriplegia – refers to complete or partial paralysis of all four limbs and torso. Also known as tetraplegia.

RADAR key – opens most locked disabled and fully accessible toilets. Available from the district or borough council, or online.

Raising the Participation Age (RPA) – legislation that means young people are expected to stay in some form of education or training until they are 18.

Reconsideration – reassessment of applications for PIP or DLA that were initially turned down. Many decisions are overturned on reconsideration.

Respite – a break from caring for someone with an illness or disability.

Retained Reflexes – in some children, primitive reflexes remain active past the first year of life. This can cause issues for their motor skills, learning and behaviour. Movement programmes can help to inhibit these reflexes, allowing the brain and body to communicate more smoothly and effectively.

Revision – an updated decision by the DWP on your claim for DLA or PIP. The outcome of a revision can be backdated to when the original decision on your claim was made. A revision can mean either a positive or negative outcome.

SALT (Speech and Language Therapist) – a health care professional who diagnoses and treats people with speech, language, communication and understanding difficulties, and individuals with swallowing and feeding problems.

Scoliosis – a sideways twisting and curvature of the spine that can also pull the ribcage out of position.

SEMH Needs (Social, Emotional and Mental Health Needs) – a special set of educational needs in which children and young people have difficulties in managing their emotions and behaviour that mean they may struggle to learn and cope in the classroom without additional strategies and interventions. Children with SEMH often feel anxious, scared and misunderstood.

SENAT (Special Educational Needs Assessment Team) – the local authority team responsible for doing EHC needs assessments and co-producing an EHC Plan with parents and professionals, if a plan is required.

SENCO (Special Educational Needs Coordinator) – a member of staff who is responsible for the co-ordination of SEND provision in schools. SENCOs have to be enrolled on and complete an NPQ within three years of taking up the post (Government SEND Regulations 2014).

SEND Code of Practice – statutory guidance on duties, policies and procedures relating to the Children and Families Act that organisations such as local authorities, schools, early years providers, NHS trusts and clinical commissioning groups must comply with (unless there are exceptional reasons not to).

SENDIAS (Special Educational Needs and Disability Information, Advice and Support Service) – statutory impartial provider of information and advice to children and young people with SEND and their parents about matters relating to their SEND, including EHC Plans, assessments, annual reviews, appeals and tribunals.

SEND Under Fives – support process to identify children who have, or may have, SEND so they can be offered the appropriate support in their early years setting and during their school transition. Involves professionals from a variety of specialisms including early years and health.

Senior Planning Coordinator – a key professional from the local authority involved in transition planning for your child. They should be invited to the Year 11 annual review and the Year 12 and 13 reviews if your young person is leaving school or college. They may also stay involved when the young person leaves school to attend further education or training.

Sensory Integration – the process by which the brain receives, processes and uses information from the five senses (sight, hearing, touch, smell and taste), the sense of balance and of knowing one’s position in space and in relation to others (proprioception), and the brain’s sense of what’s going on inside the body (interoception).

Sensory Integration Therapy – helps children who have sensory integration difficulties or sensory processing difficulties by encouraging the brain to change its response to sensory stimuli. A child’s individual needs will be assessed before a programme of therapy is designed for them.

Sensory Processing Difficulties – sometimes called sensory integration difficulties, this is a condition where the brain struggles to interpret information from the different senses.

SEN Support – additional support for children and young people with SEND that is given from a nursery, school or further education college’s own resources. If a child has more complex needs, they may require an EHC Plan.

Severely Sight Impaired – term used to describe blindness.

Shopmobility – scheme that operates in many city centres and shopping centres where a disabled person can borrow a wheelchair or mobility scooter.

Short break – fun, leisure and social activities for children and young people with SEND outside the school day, which also give parents and carers a break from their caring role.

Sight Impaired – term used to describe partial sight loss.

Signalong – communication system that uses signs based on British Sign Language (BSL) and the simultaneous use of the spoken word.

SLCN (Speech, Language and Communication Needs) – difficulties with listening and understanding, talking, or both.

SLD (Severe Learning Disability) – this diagnosis is given when a person has substantial difficulty in acquiring literacy and language skills and, often, associated problems with mobility, co-ordination, communication, perception and acquiring self-help skills.

Social Model of Disability – view of disability that states it is created by society as a result of physical and cultural barriers and attitudes that lead to discrimination and exclusion. Used in contrast to the medical model of disability.

Spasticity – medical term for muscle stiffness.

Specialist Provision – a setting that is organised to make special educational provision for pupils with SEND whose needs cannot be met in a mainstream setting.

Special School – a school that specialises in education provision for children with SEND.

Spider Therapy – a treatment for people with cerebral palsy where elastic cords are attached to the body in a way that controls movement and strengthens parts of the body affected by their condition.

Spinal jacket – special brace used to support and correct the spine. Sometimes known as a TLSO (Thoraco-Lumbar Sacral Orthosis).

SpLD (Specific Learning Difficulty) – a difficulty with certain aspects of learning. The most common SpLDs are dyslexia, dyscalculia, dyspraxia and dysgraphia.

Statutory Assessment – now called an EHC Needs Assessment, this is the process by which local authorities carry out an assessment of a child’s special educational needs. A number of people participate in the process including parents, the child’s school or college, an educational psychologist, health care professionals and social care services. At the end, the local authority will either issue an EHC Plan or explain why one is not necessary and how the child’s needs will be met.

Students’ Union (SU) – all universities and most colleges have an SU affiliated to the National Union of Students (NUS). Provides welfare services and can be a useful source of information and support when applying to a university, or when you have been offered a place.

Supersession – a review of PIP/DLA where the person’s circumstances have changed and they believe they need more help.

Supported Internship – a structured study programme based primarily with an employer, which aims to help young people who have an EHC Plan to achieve paid employment through learning in the workplace. Internships are unpaid and last for a minimum of six months.

Supported living – accommodation where there are staff on site, either in a ‘group’ home where people have their own room but share other facilities or a self-contained flat or studio. Focuses on helping the young person to develop life skills and independence, and sharing responsibility for cooking, cleaning and shopping.

Switch Access – technological device used to access computers for people with severe physical disabilities. The switch replaces the need for a mouse or keyboard.

TA (Teaching Assistant) – a member of school staff who provides individual or small group support in the classroom. Also known as a learning support assistant or special support assistant.

TAF (Team around the Family) – team of professionals from various backgrounds and services working together to provide joined-up support for a child or young person and their family.

Temporary Disapplication – removal of those parts of the National Curriculum where it is impossible or inappropriate for the child to participate.

T Levels – two-year courses that are equivalent to three A-levels. They offer students a mix of classroom learning and work placements. Courses include agriculture, construction, finance and law.

Transition Planning – a holistic approach to working out what a young person will need to support them as they head towards adulthood to ensure that they can live as independently as possible. Covers all aspects from further education and employment to health and social care, where they will live and how they can play an active role in their local community.

Trauma – a serious injury or shock.

Triage – a way to prioritise patients’ treatment based on the severity of their conditions and the need for immediate medical attention.

Universal Credit – a monthly government benefit that has replaced some other benefits. You may be able to claim Universal Credit if you’re on a low income or out of work. How much you’ll get depends on your circumstances, including your income and how many children you have.

VOCA (Voice Output Communication Aid) – an electronic device that allows people who are unable to use natural speech to generate printed or spoken text.

Will Trust – a formal legal arrangement set up as part of a will where the beneficiary is a vulnerable disabled person, to protect people who may not have the capacity to manage their own finances. There are several types of trust, including discretionary trusts and Disabled Person’s Trusts (DPTs). To qualify for a DPT, your child will need to meet certain conditions, such as receiving the middle or higher rate care component of DLA, or receiving PIP.

Work Capability Assessment – carried out by a health care professional to document a person’s capability for work or ‘work-related activity’. May include a medical. Used to assess eligibility for Employment and Support Allowance (ESA).

Year 9 Annual Review – a key review where you and your child will be asked to think about their future and, with the input of the professionals involved, start to plan out what they would like to do after the age of 16 and how they will be supported to make it happen.

Young carer – someone under 18 who helps look after a relative who has a condition or disability, e.g. siblings of a disabled young person may have to take on household chores, or help with care tasks. Young carers can have their needs assessed by social care too.

Table of Contents

- About this book

- About Reaching Families

- Using this guide with the Local Offer

- Section one: Starting your journey

- Diagnosis
- Your wellbeing and someone to talk to
- Survival strategies
- Siblings and wider family

- Section two: Finding your way

- Education
- Health and medical matters
- Life-limiting conditions
- Social care and help with daily life
- Money matters
- Social life and travel

- Section three: Teens and adulthood

- Planning for your child’s future
- Involving your child
- Growing up and relationships
- A place to live
- Employment and life skills
- Travel for young people

- Section four: Directories

- Local directory
- National directory
- Education directory
- Grantmaking directory
- Disability jargon-buster