Making Sense of Adult Life A guide to transition for families of young people with special needs and disabilities in West Sussex
2nd Edition
Making Sense of Adult Life
A guide to transition for families of young people aged 14+ with special needs and disabilities in West Sussex
Second Edition November 2018 In memory of our much-loved chairman, Seb Trezise. (1985 – 2018) Contents
Using this guide with the Local Offer...... 4 About Reaching Families...... 5 Foreword...... 6 Introduction...... 9 1. Planning for your child’s future...... 12 2. Involving your child...... 27 3. Further and higher education...... 42 4. Social life...... 68 5. Growing up and relationships...... 93 6. Money matters...... 103 7. Social care...... 131 8. Health and medical matters...... 156 9. Employment and life skills...... 172 10. A place to live...... 186 11. Travel and getting about...... 200 12. DIRECTORIES Essential contacts...... 216 Local directory...... 222 National directory...... 240 Further and higher education directory...... 260 Travel directory...... 271 Disability jargon buster...... 276 Index...... 286 Using this guide with the Local Offer
In September 2014, the Children constantly changing – services and Families Act made it a change shape and structure, new statutory obligation for local organisations are founded while authorities to provide parents with others close. information on SEND provision in their area via a website known as This is why we believe that used the ‘Local Offer’. This should be together, our book and the Local available to all families who have Offer website complement children with SEND aged from each other brilliantly. Where birth to 25 years and it must also you cannot find information in be available in another format for one we hope that you can find families who don’t have access to it in the other. The constantly the internet. changing landscape also means we will produce further editions The Local Offer brings together of this book – to this end we have information and services available scheduled the third edition for in a given local authority area. To publication in 2020. create their Local Offer, each local authority must talk to parent We hope that by using Making carers, as well as children and Sense of Adult Life with the Local young people with SEND, to see Offer, you will have the best what sort of services and support support and information at your they need. fingertips, so you can navigate your way through the transition No information resource, years as smoothly as possible. whether online or printed, can be truly encyclopaedic. By definition the information landscape is https://westsussex.local-offer.org
- 4 - About Reaching Families
Reaching Families was established • Training roadshow – we in 2008 by parent carers to deliver a variety of training ‘empower, care for and inform workshops at various parents and families of children locations and venues across and young people with disabilities West Sussex. Subjects and special needs in West Sussex.’ covered include: anxiety, challenging behaviour; DLA The charity continues to be and benefits; getting support governed and managed by parent at school, sensory issues, carers. We achieve our mission sleep management; and through delivery of a number of stress and resilience. projects and services including: • Umbrellas – we manage three support groups for • Making Sense of It All – parent carers of children who a guide for parents of children attend mainstream schools in with special needs in West Billingshurst, Littlehampton Sussex aged 0-14. and Worthing. • Making Sense of Adult Life – • Our Facebook group, which a guide to transition to has over 2,000 members, is adulthood for parents of young a vital means of providing people with special needs and information and resources to disabilities aged 14+. parents and a useful forum • Fact sheets – we have for them to seek advice and published a series of support from other families fact sheets on childhood disabilities and other For further information on issues that combine clinical Reaching Families please visit our information with local website: information on relevant projects and services. www.reachingfamilies.org.uk
- 5 - Foreword
Since 1978, Aldinbourne Trust The white paper talked has led the way in providing about education, housing a roadmap for generations of and employment and that families who have young people everyone should have the same with SEND. It is one of many opportunities to live the life they organisations founded by families wanted, something which was of young people with disabilities, long overdue. who wanted to provide great, real life opportunities, particularly as In 2006, the National Skills their sons and daughters were Council’s strategy, Learning for becoming young adults and Living and Work, called for a leaving school. radical change to enable young people with learning disabilities During the past 40 years, to progress to the maximum Aldingbourne Trust has seen possible level of independence many changes and challenges and activity in their communities in supporting young people into and in employment. adulthood. Way back in 2001, many of us involved with people However, in 2010 a working paper with learning disabilities were for the Department of Health delighted to see the government Policy Research Programme produce Valuing People, a white highlighted that ‘for many paper that set out a range of disabled people, the process of values and aims to improve moving from children’s to adult peoples’ lives. There was an air of services is problematic’ [Soper et change, of potential, of optimism, al] The paper identified problems of opportunities. in co-ordinating services, lack of multi-agency working, lack of
- 6 - information for young people and sources of information and parents, insufficient attention to support, and that talking to other the concern of the young person, families can be invaluable. and lack of appropriate services for people to move on to. For people approaching adulthood it can be a tricky time. It was clear that there were still One young man’s parents started many problems in transition to their search for support when adulthood. In 2014, the Children’s he was in his early teens. There and Families Act renewed the were some tentative, anxious focus on transition to adulthood faces. When he and his family for young people with SEND. were ready, it was time for him Local authorities now have a to move in to a shared flat and legal duty to set out how they will start his learning and working in a provide the support children and social enterprise. After his parents young people will need to prepare left, he sat quietly and a big tear for adult life across education, ran down his cheek. It was a health, social care and other milestone moment, experienced relevant services, such as housing by many a parent and young and employment support. person when they leave home. Within days, however, this In the twenty years I have been at young man revealed his sense of Aldingbourne, I have worked with humour, appetite for adventure many families from across the UK and strong camaraderie. I have who want the best for their young enjoyed spending time with him people and have been on a quest at music festivals, cooking groups to find ways to make it happen. and bumping into him in our Many have come to us by word town. He has a great life. of mouth. We connect families to share their experiences and In 2016, the Aldingbourne wisdom. Everyone’s journey is Trust participated in a national different, butMaking Sense of survey on the impact of Valuing Adult LIfe is a reminder to families People. For transition, the lived and people that there are many experiences of individuals,
- 7 - families and professionals relationships and follow their highlighted similar themes to interests – just as any young adult Soper’s research. Carers from would expect. Ensuring early across the UK also told us there adult experiences are positive are some improvements being and that it is a time of exploration achieved by the use of personal and adventure has a powerful, budgets, an emerging culture progressive impact on future of participation and higher outcomes for our young people. expectations for good housing and access to employment. I have the privilege of working These higher expectations are alongside people with learning vital – we must keep raising the disabilities who work full-time, bar and expecting that people will part-time, win employee awards, experience life’s ups and downs, travel the length and breadth of challenges and successes. the country, talk at conferences, recruit their own staff, parent With diminishing public funding their own children, support and in relation to demand, there care for their friends and families, is a good case for investing in exhibit and sell their artwork, prevention and early support. run half-marathons, challenge As this guide goes to print, stereotypes and live good lives. Aldingbourne Trust is opening our first accommodation in West I applaud the Reaching Families Sussex specifically for people Team for publishing such an leaving home for the first time. invaluable resource for young people with SEND and their We are working in partnership families across West Sussex. with Chichester College and with some of the groups listed within Sue Livett to listen to young people and Managing Director, their families. We know people Aldingbourne Trust with SEND can – and do – live and develop in communities where they learn, work, have
- 8 - Introduction
Reaching Families is delighted alike, who have given us excellent to present you with the second feedback on the content. We edition of Making Sense of Adult were particularly delighted to Life, our guide to transition to find in an online survey of parent adulthood for parent carers of carers in November 2017 that 90 children with special educational per cent would recommend it to needs and disabilities in West other families. Sussex. It is immensely satisfying to do so on the tenth anniversary Making Sense of Adult Life has a of our founding. similar structure to our partner title and also uses accessible First published in March 2016, language. It has been thoroughly this title lead the way in providing checked to ensure information is information about transition relevant and up to date. Chapters to adulthood at a time when have also been reviewed by West many organisations were still Sussex professionals to ensure in the early stages of producing that parent carers have the best resources to help parent carers possible information and advice and young people to think about at their fingertips. their future and what it may look like. It is designed to be used as and when you need it; not exactly As a result, Making Sense of Adult bedtime reading but a useful Life has been as well received as resource to reach for when you our partner title Making Sense of need further information or feel it All, being welcomed by both in doubt on a subject or issue. parent carers and professionals
- 9 - We know from research and information to parents cannot be contact with parent carers across understated. Knowing how and the county that transition to where to best access support for adulthood is a daunting time for our children might not be half the young people and parents alike. battle we face but does give us a The move from children’s to adult head start and those parents with social services, from secondary the most know-how inevitably to further education, or perhaps secure the most support. into training and/or employment, housing and independent living We hope this new book will help present a number of challenges parents in preparing their child for for young people and their the journey into adulthood. The families, not least in accessing content is based on another guide the information they need to researched and written by parent successfully navigate their way carers in Brighton. Through the into new and uncharted territory. Next Maze is published by Amaze, who we have long held in high The recent local area Ofsted esteem for their excellence in the inspection, carried out in February delivery of services to the parent 2018, whilst generally positive carer community. We have taken about the overall progress the content of Through the Next being made in West Sussex, did Maze and adapted it to a West highlight the challenges we face Sussex audience. in providing better support for young people with SEND as they Since the first edition of this book make the transition to adult life, was published in 2016, Reaching in particular the provision of more Families has been working hard to consistent and cohesive support deliver more support for families from health and social care and of young people with SEND help in securing and maintaining including more workshops on paid employment. issues that are pertinent to them and other information available in With challenges like those our series of fact sheets. described above the value of
- 10 - There are a number of people four young people from West we would like to thank for their Sussex who are featured on the editorial contributions and front and back covers: Sarah feedback on this guide. Bush; Sophie Oliver; Tom Speers; In particular we would like to and Hannah Szczepanski. thank Sue McMillan, an editor and parent carer with more than 20 Making Sense of Adult Life and years’ experience in publishing; Making Sense of It All are both Helen Jervis for her hard work and available to parents free of tenacity in checking and updating charge. The books are available the directories; and Charlie to order on our website (with a Rowlins for his excellent work charge of £2.50 for postage and designing the book and preparing packing) or you can source them it for print. via schools or agencies within health and social care. We would also like to thank the following people for their They are also available to editorial contributions: Ann download as e-books from our Blackburn, Tina Brownbill, website in both iBook and Kindle Lindsey Butterfield, Garrett Craig, format. For further information David Deane, Elizabeth Flegg, please visit: Karin Fuchs, Robert Hayes, Lucy www.reachingfamilies.org.uk Hughes, Aloisia Katsande, Erica Keegan, Jo Kenworthy, Richard Editor’s note: Lamplough, Sue Livett, Heather In this book, you will see that we have McIntosh, Charlotte Moroney, used the term ‘child’ interchangeably Michael Rhodes-Kubiak, Liam with ‘young person’. This has been Ryan, Rachel Sadler, Kate Scales, done to avoid needless repetition and to make the text as accessible Mike S Smith, Sophie Spearman, as possible. No matter how old our Peter Stanley, Sarah Stirling, Ellen offspring are, they will always be Tomlinson and Paul Woodcock. our children, so we feel that it is still appropriate to use this term, even Special thanks also goes to the when your ‘child’ is an adult.
- 11 - 1 Planning for your child’s future
For parent carers of a child with • Higher education and/ special educational needs or a or employment – this disability (SEND), thinking about includes exploring different the future can feel overwhelming. employment options, such Picturing your child as an adult as support with becoming can be especially difficult if you employed and help from do not know how their condition supported employment will progress, or how their needs agencies. may change. • Independent living – this means young people having However, early planning for choice, control and freedom your child’s future will help you over their lives and the to ensure that they get the support they have, their support they will need as they accommodation and living reach adulthood and move from arrangements, including children’s to adult services. This supported living. is known as ‘transition planning’. • Participating in society – Thinking about what your child including having friends and needs and how this may change supportive relationships, as they grow will help you to and participating in, and make sure that their transition contributing to, the local goes as smoothly as possible. community. • Being as healthy as possible The SEND Code of Practice 2015 in adult life. says preparing for adulthood should cover the following: For more go to: www.preparingforadulthood.org.uk
- 12 - This handbook will support you as young person’s individual needs you consider your child’s options through their own SEN support as they begin their transition programmes. from childhood to adulthood. As part of this, schools and Recent changes to the colleges should include planning SEN system for effective transitions as part of their Individual Learning Plans or other record-keeping approaches, From September 2014 there were as this is key to the future success some big changes to the SEN of young people with SEND. You system. Statements of Special can find out more about how Educational Needs (SEN) were your child’s school or college replaced by Education, Health deals with transition planning by and Care Plans (EHC Plans). Since contacting them. then, the majority of children and young people with existing Whether your young person has Statements of SEN have been an EHC Plan or is supported by transferred to EHC Plans. their school or college, the aim should be the same: support The advantage of an EHC Plan should help a child’s development is that it brings together all the so that they achieve the best support a child or young person possible educational and other needs (and is legally entitled to) outcomes. in a single plan, which can last up until a young person is 25 years Therefore, if you or your young of age. The plan sets measureable person decide that they need outcomes. Some will be short- additional help over and above term, while others will look more that offered by the school or to the future. college’s SEN support programme they will be able to request an It was hoped that the changes to EHC Needs Assessment. the SEN system in 2014 would help schools and colleges to be Getting an EHC Plan can be very able to meet the majority of a helpful, as it may enable your
- 13 - child to receive support with their Taken from the Council for education up to the age of 25, if Disabled Children: www. they need it. You can find out more councilfordisabledchildren.org.uk about EHC Needs Assessments at IPSEA: www.ipsea.org.uk/what- You can find out more about you-need-to-know/ehc-needs- what to expect in a government assessments. document called the SEND Code of Practice 2015. The Code of Practice provides guidance about Transition planning: how children and young people what to expect with SEND should be supported. To view the SEND Code of Practice The Children and Families go to: www.gov.uk/government/ Act 2014 states that the Local publications/send-code-of- Authority ‘must set out how they practice-0-to-25. will provide the support children and young people will need to Preparing for transition prepare for adult life across planning education, health, social care and other relevant services, such as There are plenty of things you housing and employment support. can do to get the most out of transition planning in Year 9 and When your child turns 14 (usually in the future. in Year 9) every annual review should include a focus on preparing General planning for adulthood. For health services this will require them to plan an You’ll get much more out effective transition from specialist of transition planning if you paediatric services to adult health understand some of the options care and support young people that may be available to your to understand how services will child, so it pays to spend some support them as adults, ensuring time finding out what’s on offer. those professionals understand the young person’s needs and put in The focus now is very much on place the appropriate services.’ the child, so their views and
- 14 - Planning aspirations should be at the School staff should be able to centre of transition planning. tell you about School Leaver Programmes and alternative Key It is important, therefore, that Stage 4 (Year 10 and 11) provision you prepare your child so they for young people with special can contribute as much as is educational needs. Schools may possible. If you can, you should have strong links with local further talk to your child about what they education providers and may would like to do post-16, and provide pupils at Key Stage 4 with also look at their options looking work experience programmes further ahead into adulthood. that run alongside GCSEs, or are an alternative to them. The school If your child has communication will usually provide careers advice or learning difficulties, it is still and guidance for students from important to take their views Year 9 onwards. into account. You will find plenty of suggestions to help you get a Questions to ask yourself clearer idea of their hopes and preferences in the next chapter, These are some of the questions Involving your child. For example, you might want to ask yourself if your child has a social worker, in preparation for transition local Advocacy Services (see planning. You may want to make pages 30 and 36) may be able to a note of the relevant ones so support them to communicate you can take them to the annual their ideas to professionals. review meeting.
You should also consider talking • Does your child have any to other parents, school staff thoughts or ideas about what or, if your child is at mainstream they will do when they leave school, the school Special school? What would you like Educational Needs and Disabilities them to do? Coordinator (SENDCo) can give • Has your child got a school you a range of information. record of achievement or
- 15 - equivalent? Looking over this • What daytime activities are may help you to think about available locally? Would this their strengths and future type of provision suit your direction. child? • What have other children • Does your child have health from the school gone on to do? needs? How will health • What type of social activities care provision like speech does your child enjoy? and language therapy, • What courses are offered occupational therapy or by local colleges and how physiotherapy be arranged? could your young person • Does your child need specialist be included in their local equipment? If so, who will provide and maintain it? community? • What about transport? How • Are there courses offered by will your child get to a college colleges further from home course or apprenticeship and that may be more appropriate social activities? Will they for your young person? need support to do so? • If you’re thinking about a • What about benefits? Are you residential college, how could and your child getting all the it be funded? benefits you’re entitled to? • If your child would prefer to be • Is your young person eligible working, can you find out about for a 16-19 year old bursary to apprenticeships, training and help with costs like transport, employment schemes that can food and equipment? offer support? • Do you know how benefits • Will your child live at are affected by college or part- home with you or move to time work? Do you know how independent or supported your entitlement to benefits living when they leave school? will change if your child claims • If your child stays at home, benefits as an adult? will you need a break and if so, how often? How can this ‘I knew what I wanted to do from be organised and funded? quite an early stage but I needed to know how to get there.’ (Sarah, 18)
- 16 - Planning
First steps: The Year 9 into the plan, so it should be annual review updated at each review, clearly stating the actions that need to Parent carers whose child has be taken, the responsibilities of an Educational Health Care Plan everyone involved and timescales (EHC Plan) will already be familiar for all the actions. with the annual review process at school. However, the Year 9 Young people are now expected annual review is slightly different. to stay in some form of education or training until they are 18. This The review will cover the same is called ‘Raising the Participation things as before – your child’s Age’ (RPA). This means that it EHC Plan will be looked at is no longer an option to leave as usual, the same issues will school at 16 and get a full- be considered and the same time job, unless training is also timescales apply. But the meeting undertaken. So, looking at how will also focus on transition your child will continue their post- planning – the beginning of 16 education will be a key part of preparations for adulthood – so it transition planning. will cover a far broader range of subjects than you’ll be used to. In addition to further education, It may sound overwhelming, but vocational training and it is just the first step in a process employment, the transition that will take several years. process should cover your child’s health, leisure activities and where For the Year 9 annual review, you he or she may live as an adult. and your child will be asked to think about their future and, with In West Sussex, advice and the input of the professionals guidance is delivered through involved with your child, a plan of the school setting and, when action will be put together. your child reaches their year of transfer (Year 11 upwards), a If your child has an EHC plan, the Senior Planning Coordinator from transition planning will be written the Local Authority will also be
- 17 - involved. Schools can also access brought to the meeting in a way careers advice and guidance from your child can understand, so the West Sussex Skills Business this may include photographs, and Enterprise Team. symbols or pictures, for example.
You can also get advice from West Everyone involved in supporting Sussex SENDIAS. It has Young you and your child to prepare for People Advisers, who can support the future should take a person- young people up to the age of 25 centred approach to annual and help them to think through reviews. Meetings should be their options. For more details, interactive and less formal than contact their helpline: traditional annual review meetings 03302 228 555, or email: to ensure that you and your child [email protected] are central to the whole process. (parent carers) or [email protected] The aims of a person-centred (children and young people). approach to the Year 9 transition review meeting:
You and your child at the • To identify and discuss your centre of planning child’s strengths – what they’re good at, what people The government says disabled like and admire about them young people should have – because whatever they do ‘person-centred’ transition plans, in the future should build on which clearly state the support their strengths. they’ll need once they leave school. • To identify what is important to your child (now and in A person-centred approach the future) and the help and encourages participation from support they need. the young person, parents and • To identify what needs to everyone attending the transition happen to keep your child as planning meeting. It also means healthy and safe as possible. that information should be • To identify and discuss what is
- 18 - Planning
going well and what isn’t going meeting so you can help them well from the young person’s to prepare and you know and their parents’ perspective, what they might want to as well as from the perspective happen next. of school staff and others • Think about the aims of the attending the meeting. person-centred transition • To agree actions that support review before the meeting so your child to get what is both you and your child come important to them now and prepared. in the future, continue what is • It can be helpful to write going well and change what down the things you want isn’t going well; and try to to talk about beforehand, so resolve any ongoing issues. that you and your child have a checklist of points to cover Tips to help you prepare during the meeting.
• Check if your child’s school is What to expect familiar with a person-centred approach to transition review These are some of the things meetings. If they’re not and you should expect in a transition you’d like them to use this review: approach, ask the school in advance. If you need help with • The head teacher or another this you can contact West member of staff, usually the Sussex SENDIAS, see page 18 Special Educational Needs for details. and Disabilities Coordinator • Some schools are doing (SENDCo), is responsible preparation with young for ensuring that the Year 9 people before their Year 9 annual review is organised transition review meeting. as a transition-planning Ask if this is happening at meeting. They will send out your child’s school. invitations, sort out times and • Discuss the topics with your dates and gather together any child well in advance of the relevant reports and advice.
- 19 - • They must invite: the parents; time to ask for a social care the young person; your assessment for your child if Senior Planning Coordinator you have not done this before. from the Local Authority; a • The Year 9 annual review representative from social paperwork follows the care (social worker); and Department for Education’s anyone else the head teacher ‘Preparing for Adulthood or the Local Authority suggests. pathways’. You can find out • Most people invited to the more about this at www. Year 9 annual review don’t preparingforadulthood.org.uk, have to attend. They can opt or by searching on the Local to send written reports or Offer (see page 4 for more advice to the review instead. information). You can also But in practice they don’t download the Preparing for have to do either. A social Adulthood Information Pack worker should come if your from: www.sendpathfinder. child’s likely to need social co.uk/preparing-for- care support after they leave adulthood-information-pack. school, or if they’re ‘looked • The school will write up your after’ by the Local Authority. child’s annual review report. • To prepare for a Year 9 annual If he or she has an EHC Plan review, the Local Authority the planning for adulthood has a legal obligation to check may be taken into the plan, as with social care whether the it has a focus on future goals child is disabled. Children and and outcomes. young people with EHC Plans are considered disabled and Key professionals involved in are protected under the new transition planning legislation. You might not have had contact with social Senior Planning Coordinator care before, but some support services may be useful to In West Sussex, the Senior your child as they become an Planning Coordinator should adult, so this might be a good be invited to the Year 11 annual
- 20 - Planning review and also the Year 12 and Tips for the year 9 annual review 13 reviews if your young person is leaving school or college. Before the meeting
The Senior Planning Coordinator • Remember that, along with may attend subsequent reviews planning for the future, as appropriate. They may also your child’s EHC Plan will stay involved when the young be reviewed and may be person leaves school to attend amended. Read through your further education or training. child’s EHC Plan to see whether it needs amending. If it does, Social Care flag it up with the school and casework officer and ask If a young person is already them to get any assessments known to Children’s Services, or advice that supports the referrals are made to equivalent amendment before the annual teams within Adult Services to review meeting. see if they will provide support • If you need advice, contact once the young person is over 18. West Sussex SENDIAS on their helpline or by emailing Young People Advisors them (see page 18). • If your child hasn’t had Young people can get information an assessment from an about colleges and courses that Educational Psychologist (EP) might be suitable for them from in the past couple of years, West Sussex SEND IAS’s Young it might be worth requesting People Advisors. If your child one before the meeting to wants to do a particular college make sure all their special course after they are 16, they can educational needs have been also ask the YP Adviser to look clearly identified. Make sure into whether their Year 10 and significant needs like speech 11 subject options will give them and language therapy don’t the qualifications they need. For slip out of the EHC Plan. contact details, see page 18. Changes to the EHC Plan
- 21 - are decided by the Local • In theory, reports about your Authority, but you have the child should be circulated to right to appeal them. everyone who’s planning to • Identify who your child’s attend at least two weeks Senior Planning Coordinator is in advance. In practice, this and, if they’re currently receive hardly ever happens, so it’s social care, ask who will worth asking the school support your child’s transition to chase the professionals to adult social care. It pays to involved or do so yourself. establish a relationship early • We suggest you take on so you can ask for support if someone with you to support you need it later. you too, such as a friend or • If you think there’s a family member, or you could professional involved with ask for a representative from your child (such as from health West Sussex SENDIAS to come with you (see page 18 services) who should be invited for contact details). If to the meeting, make sure your child is coming to the the head teacher or SENDCo meeting, is there someone knows well in advance so they’d like to have there to there’s time to invite them to support them, like a friend, submit information or attend advocate or mentor? the meeting. • Make sure you inform the • For some of us, although we school in advance if you intend want our children to continue to bring someone with you to learning, it feels unrealistic to support you or your child. talk about career choices. Our • Meetings can feel difficult. focus is more on the need to Reaching Families has arrange support for our child produced a fact sheet called in the future, such as short ‘Meetings and paperwork’ with breaks or supported living. hints about how to get the If this is the case, make sure most out of them. You can someone from social care has find a copy on our website: been invited to the meeting www.reachingfamilies.org.uk/ and will be attending. factsheets.htm.
- 22 - Planning
• West Sussex SENDIAS has and send copies of this to: the also produced an information parents; the Local Authority; leaflet to help parent carers the head teacher; anyone else with annual reviews (see page who attended or provided advice 18 for contact details). and/or reports for the review; plus anyone else that the Local At the meeting Authority feels is appropriate.
• Be aware that people at the If you disagree with the content of meeting may not have any an EHC Plan, you have the right to previous knowledge of your appeal to the Special Educational child, so you may need to fill Needs and Disability Tribunal them in. (SENDIST). Until recently, appeals • Ask what each of the services could only deal with education represented at the meeting matters. However, as of April can offer and what the 2018, a two-year national trial has planning process will be. begun to extend the power of the • Be clear about your child’s tribunal, so it will be able to make strengths and the support non-binding recommendations they need. on the health and social care aspects of EHC Plans. After the meeting If you need help with an appeal, you can contact West Sussex Annual reviews for EHC Plans West Sussex SENDIAS, see page continue until the young person 18 for details). You can also ask for leaves school. Transition Planning advice from IPSEA, see page 25 will be discussed at future annual for details. reviews and after each one the EHC Plan will be added to and Constantly evolving changed as needed. What’s agreed in the Year 9 The school must prepare a annual review is the beginning report on the annual review of a long journey and decisions
- 23 - are not cast in stone. While some Families’ training roadshow, young people know what they ‘Making Sense of Transition to want to do after school, for others Adulthood’. For more, go to: it will be a matter of waiting to www.reachingfamilies.org.uk/ see how they get on. It’s not training.htm. West Sussex always possible to decide early Parent Carer Forum also runs on and new options may present an information, advice and themselves further down the line. support fair entitled ‘First Steps to Adulthood’. For more, go to: Some of us have also been www.wspcf.org.uk or check their surprised by how much our Facebook page for dates. children have flourished and grown over the years and have Many national organisations also been able to consider a much offer information and resources wider range of opportunities than about transition. The British we would have thought possible Institute of Learning Disabilities when they were younger. (BILD) has an easy-read section for people with learning Some young people with more disabilities and resources for complex needs will keep an families. See: www.bild.org.uk. EHC Plan up to 25. The Senior Planning Coordinator will help Cerebra has fact sheets and a to ensure that the EHC Plan is parent guide to transition. See: updated and relevant to the www.cerebra.org.uk. support they need at college. This should include active input The Choice Forum is an online from you and your child. community for people with learning disabilities and their Information resources families where all sorts of topics can be discussed. There is an Locally, as well as getting easy-read guide to staying safe information and advice from on the forum. For more, go to: West Sussex SENDIAS, families www.choiceforum.org. can also attend Reaching
- 24 - Planning
Contact has resources to help The Down’s Syndrome families during transition. See: Association has a section https://contact.org.uk/advice- entitled ‘Planning for Adulthood’ and-support/your-child-your- and an easy-read leaflet called family/moving-into-adulthood. ‘Listen to Me’. To find out more go to: www.downs-syndrome. The Council for Disabled org.uk/for-families-and-carers/ Children created the ‘Transition teenagers-and-young-adults/ Information Network’, providing planning-for-adulthood. online resources, publications and events. It also publishes The Foundation for People with a free magazine entitled My Learning Disabilities has a guide Future Choices. Go to: https:// entitled ‘Thinking Ahead’, to help councilfordisabledchildren.org.uk/ families to plan for transition. You transition-information-network. can download it at: You can also access their ‘Into www.mentalhealth.org.uk/learning- Adulthood’ resource hub with disabilities/publications/thinking- resources such as fact sheets, ahead-planning-guide-families. toolkits, and information about case law and legislation For advice and model letters on updates. Go to: https:// SEND law and education, you can councilfordisabledchildren.org.uk/ refer to IPSEA’s section for young our-work/adulthood. people aged 16 to 25 years. www.ipsea.org.uk/pages/ Dimensions works with people category/young-people-aged-16-25. with autism, challenging behaviour, There is a separate section giving complex needs and learning advice on transport to school or disabilities. The website has college for over 16s, see: resources for families and young www.ipsea.org.uk/pages/category/ people, including a transition transport-to-school-or-college. guide and other easy read guides: www.dimensions-uk.org/what- Mencap has a section on we-do/transition. transition to adulthood at:
- 25 - www.mencap.org.uk/advice-and- Preparing for Adulthood is funded support/children-and-young- by the Department for Education people/education-support/ to support local authorities , but transition-adult-services, with families may also find it useful: links to other websites such www.preparingforadulthood.org.uk. as the British Association for Supported Employment Scope has a section on its website (www.base-uk.org) and the Care that offers transition advice to and Support Alliance parent carers and teachers. It also (www.careandsupportalliance.com). has an online community, where members can get support and The National Autistic Society advice. For more, go to: also has comprehensive transition www.scope.org.uk/transition. advice and a free transition support service for young people with SOS SEN has information and autism aged 14+. For more, go to: runs workshops and events on www.autism.org.uk/transition. post-16 options. You can find out more at: www.sossen.org.uk. You can find the full National Institute for Health and Care Together for Short Lives works Excellence (NICE) guidelines on with families of children and transition to adult health and care young people with life-shortening services at: www.nice.org.uk/ and life-threatening conditions. It guidance/ng43/evidence/full- has a transition to adult services guideline-pdf-2360240173. hub, which can be accessed at: www.togetherforshortlives.org.uk/ The NHS website has a section on changing-lives/developing- transition to adult health and care services/transition-adult-services. services, with useful information and links. Go to: www.nhs.uk/ conditions/social-care-and- support/transition-planning- disabled-young-people.
- 26 - 2 Involving your child
Parent carers are used to making It can be hard to put aside our decisions on behalf of their child own hopes and expectations to try to ensure that their needs for them, but it’s important to are met. Over the years, you will remember that plans that take have had to make many important their wishes and feelings into choices for your child and will account are more likely to work. probably have felt comfortable doing so. This may have involved Although there may be a huge fighting hard to secure the variation in our children’s additional support or specialist ability to make decisions, the services that your child needs. information in this chapter is relevant to all families, including It is a huge responsibility and, parents who may feel that their even though your child is now teenager has a limited ability to moving into adulthood, the express their views. Most young pressure to do the right thing by people can show both positive him or her remains. For some and negative preferences to a parent carers, therefore, the idea person, a place or an activity of involving their young person in decision-making may feel quite and this ability can be invaluable daunting, especially as we all when making decisions. want the best for our children and don’t want them to make choices Some young people may use that they may later regret. sign-language, visual symbols or other augmented or alternative However, all young people know forms of communication, but for what they like and don’t like and simplicity, the terms ‘she tells us’ they may have their own strong or ‘he says’ will be used to cover opinions about their future. all methods of communication.
- 27 - In our experience, a young children who, after years of person’s views are likely to be decisions being made for them, given greater weight if they may feel that they don’t have a communicate directly with those voice or that their opinion is not as involved in the decision-making important as those of other people. process, but they will need your support to do so. ‘You get talked about by everyone: “where shall we sit him... what time This chapter will suggest ways in does he go to bed?” in front of you. which you can involve your child You really believe you aren’t as much in the decision-making process, of a person as everyone else. You’d as well as making sure his or her never think of having a say.’ (Jack, 16) wishes are heard during transition planning. It also provides The balance between involving information on some of the rights your child and fulfilling your role as you and your child have in the a parent and protecting their best eyes of the law. interests can seem a difficult one. But at 16, they’ll legally have the Choices for our children right to make their own decisions, according to their ‘mental Every parent wants their child to capacity’ and at 18 they’re legally make good decisions that lead to adults. It’s part of our job as them being happy and fulfilled parents to help them prepare for in life. One of the things that this during their teens. concerns many parent carers about encouraging young people Worries about their vulnerability to have a say is that we want to as adults can stop us encouraging make sure that they understand young people to get used to their options and what the making some choices and outcomes of each choice may be. decisions, but we will make them less vulnerable if we teach However, the views of children and them that they have a right to be young people can be overlooked. listened to and that their views This is especially true for disabled should be taken seriously.
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Involving your child
What the law says someone who may not be able to make decisions for themselves. It It is a good idea to familiarise outlines how to decide if someone yourself with the laws protecting has capacity to make a decision your child’s rights around and, if it is felt that they are unable decision-making. These are: the to do so, it explains how decisions Mental Capacity Act 2005; the should be made for them and Equality Act 2010; the Human who should be involved in this. Rights Act 1998; and the United Nations Convention on the Rights The Mental Capacity Act covers of Persons with Disabilities 2008. major decisions including: property and financial affairs; The Mental Capacity Act 2005 healthcare and treatment; where a person lives; and Parents have responsibility for decisions about everyday life decision-making for their children such as personal care. Some but, once they reach 16 years of activities or decisions need more age, the law says young people capacity than others, but very have the right to make decisions few people are unable to make for themselves, wherever any decisions, even those with possible. The Mental Capacity Act severe or profound and multiple 2005 covers a person’s ‘mental learning disabilities and high capacity’ – in other words their support needs. ability to make decisions for themselves and what to do if it If people have ‘mental capacity’, is established that a person does they’ve the right to make their not have mental capacity. own decisions, whether others agree with those choices or not. The act aims to protect and This means that although you empower people who may may disagree with a choice your not be able to make their own young person has made, you decisions. It also helps parents cannot use this to argue that he or carers understand how and or she does not have capacity. when they can act on behalf of
- 29 - If someone doesn’t have the visit www.publicguardian.gov.uk capacity to make a particular where you will find some free decision for his or herself, the information booklets aimed at Mental Capacity Act makes it families. clear who can act on their behalf and how they should go about it. Several other organisations can This is not necessarily you as their also help. Hft (previously Home parent, although the act says Farm Trust) has produced a guide that parents and family should be for carers called Using the Mental involved. For example, you might Capacity Act, which is available become their appointee to look on their website: www.hft.org.uk, after their welfare benefits, but a or call 0117 906 1700 and ask for healthcare professional might be a copy to be sent to you. Mencap the decision-maker for them over has a resource pack aimed at a health issue. parents of young people with more severe learning disabilities, The law also states that all which you can download free possible steps must be taken from www.mencap.org.uk or call to help people make decisions 0808 808 1111 and ask for a copy. about their lives. It explains how The Foundation for People with capacity should be assessed to Learning Disabilities’s guide, decide whether a person is able ‘Thinking Ahead’ (see page 25) also to make a particular decision at covers the Mental Capacity Act. a particular time, and provides a Code of Practice for someone Help is also available from the acting on their behalf. Decisions charity POhWER, a charity that made for the person must be in provides support and advocacy their best interests and should services with regard to mental place the least restriction on their capacity in West Sussex. See: basic rights and freedoms. www.pohwer.net/in-your-area/ where-you-live/west-sussex or If you want to find out more call 0300 456 2370. about the Mental Capacity Act,
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Involving your child
The Equality Act 2010 and Helping your child to make Human Rights Act 1998 choices
These two acts support our ‘The consultant spoke to me, not my children’s rights to respect, choice carer, and I told him the problems and independence in their adult I had with the medication, and lives. The Equality Act 2010 aims together we sorted it out.’ (Sarah, 18) to prevent discrimination on the grounds of age, disability, gender, Most of our young people will be race, religion, sexual orientation asked to make decisions about or transgender status. It replaces what they want to do and the the Disability Discrimination Act sort of help they need as they 1995 and covers employment, move into adulthood. Some of education, public and private our young people will be able services, transport and more. to make these decisions for themselves, while others may The Human Rights Act need considerable support, 1998 brought the European especially for decisions with far- Convention on Human rights into reaching consequences. UK law. Its key principles include the right to liberty, a family life Involving children in decision- and freedom of expression. If making is made much easier if you want to find out more, visit they are already used to making the Equality and Human Rights choices and know that both they Commission (EHRC) website: and their views matter. www.equalityhumanrights.com. You may find that you have to The Equality Advisory Support remind others dealing with your Service (EASS) also has an advice child that their views count. and guidance section on their Whenever other people are website at: communicating with your child www.equalityadvisoryservice.com. make sure that they are given You can also call their helpline on the chance to express their own 0808 800 0082. opinions and preferences and
- 31 - that these are taken seriously by If your young person is choosing the other person. If your child what to wear you can help: “It will knows that their views are valued be very cold today.” and important in everyday life, this will build their confidence and Similarly, when it comes to help them to make their voice transition the first step towards heard in important meetings. deciding which further education course to choose could be: ‘What ‘It’s hard to make choices... if people full-time courses are running?’ ignore you and don’t even try to find If the choices still seem confusing out what you want. They talk about to your young person, you can you as if you aren’t there.’ (Andrea, 17) help them by narrowing the options further. Building decision-making skills ‘Dan couldn’t decide which DVD to You can build your child’s watch so I said, “Would it help if I confidence to help them make gave you three to choose from?”’ big decisions by giving them plenty of practise making smaller, If you do limit options, be careful everyday ones. As a parent, you not to do so for your convenience, can create opportunities for your or present them so the young child to practise ‘having a say’. person chooses what is going to please you or others, rather It can be useful to break things than themselves. Remember, it’s down into smaller steps. For not just what you say, but how instance, to help your young you say it and what your body person to choose from a language suggests. long menu it might be more ‘Alice picks up on the intonation of manageable if certain items my voice and even the order I present are ruled out, so you might say, choices in. A lot of her speech is “You’re not keen on pasta.” echolalic so I don’t offer what I think Choices about clothes to buy can will be her preferred choice last. It’s be made easier if you give extra about sounding interested without information: “Laces are tricky.” cueing her decision.’
- 32 -
Involving your child
Talking about the practical things example, if you’re planning children need – like someone a day out, you might group to keep an eye on them, or a several food options together gluten-free diet because of their or group together options for allergies – can be a helpful way getting there. to practise the decision-making • Remember to congratulate process because it shows them the the young person on thinking behind making choices. successful decision-making. This is a useful skill to learn Saying, “That’s a good for negotiating in more formal choice!” conveys your pride in review meetings. their ability to choose, as well as confirming that a decision It is also important to check that has been made. your child has really understood what you are discussing so try to Putting young people in the find ways to practise this. picture
‘I say, “Can you tell me what you think It can be hard for young people is going to happen?” or, “Could you to imagine what it might be tell Dad what we talked about?” That like to do something they way Michael has the job of explaining haven’t tried before, whether it to someone else.’ it’s something small like a new food, or something bigger like Tips for building decision- a work placement. Pictures and making skills photographs can help them. For instance, looking through • Present a choice broken down magazines could help them into small, manageable steps. decide what haircut might suit • Check the choice has been them or what colour scheme understood. they’d prefer for their room. But • Group different options the best experience, of course, is together by an important the real thing: common factor. So, for
- 33 - ‘Jack wanted to paint his room red. ‘Chloe’s friends all hang about in town I asked, “What sort of red?” and he Saturdays and, of course, Alice wants said, ”Like Christmas.” I took him to to go. I was really worried about what a friend’s house because her sitting would happen if she got separated from room is red. He said, “It’s very hot the crowd. Could I trust her sister to and busy. I want a quiet room.” So look out for her? I kept saying what if we looked at the charts again and this... what if that... In the end I realised abandoned red!’ the arguments were making us both miserable and she said I was treating This parent was prepared to go her like a baby. We got her a mobile and along with her son’s decision to put in our home number. She promised paint his room red. When your to ring me if she got lost and we’ve young person is making decisions practised who is safe to ask for help. it is important to remember and I have to start trusting her because she accept their choices even if it is starts college next year. Of course I still not the decision you had hoped worry, but I try not to let it show.’ they would make. Tips for coping with worries Dealing with anxieties
‘I thought we’d talked about • Unpicking worries can everything, but still David refused to take time, especially if it’s stay for the sleepover. I asked what something that doesn’t else there was to worry about and he make much sense to us. It’s asked how he would know it was his important to take all worries turn in the bathroom. It just hadn’t seriously; they arouse strong occurred to me. Once I knew, I could feelings and can get in the help him sort it out, but it was ages way of trying new things or before he told me.’ making choices. • Consider the potential risks Sometimes our own worries are communicated to the young and build in safeguards. In this person without us realising. For way the young person can example, our fears about their take another step towards safety may contribute to a child’s independence. anxieties about new situations.
- 34 -
Involving your child
Under pressure fairness, considering the views and feelings of others, and living with Young people rarely make majority decisions. Finding out decisions they’re happy with if that it’s fair for everyone to have they feel rushed, under pressure, a chance to say what they think, or they are unable to give their that it’s okay to have different whole attention. Sometimes ideas and to change your mind as a they’re too interested in the TV, result of hearing what others think bored, tired, or feeling unwell. is useful learning. It’s also helpful Some places aren’t good either; to discover that sometimes you don’t get your choice and have to perhaps the shop’s too crowded, compromise. These realities can the sales staff too persistent or be hard to accept, but it makes the music too loud. If it’s hard more sense to young people if pros to hear yourself think, a young and cons are discussed openly. person may choose anything just to avoid the pressure. ‘Mealtimes, around the table with everyone, that’s when we talk about ‘Tom came back with a CD he didn’t big things like holidays. My priority want. The shop didn’t have more until is not too hot, Sam always wants a Tuesday but the man said, “This one sandy beach and Jane wants her own is just as good”. Of course it wasn’t, it tent this year. I needed to know that if didn’t have the right tracks and Tom she was to have a tent, she could take was very cross. He seems very able, responsibility for her own space. We but we hadn’t appreciated that he agreed that if she kept her room tidy hadn’t learned to say, “No thank you, from now on, she would have a tent I only want to buy…” After that we of her own. Later we sat down and did some role play and practised being thought about keeping her room tidy, assertive. I remember we had a lot of dirty washing, hoovering and finding fun taking turns doing the hard sell a home for all the cuddlies.’ and standing firm.’ Tips for talking it through Choices as a family • Negotiate a good time Making decisions as a family can and place to think about help a young person to learn about important things.
- 35 - • Remember, choosing to take complaint or get legal advice. more time to think about For more information go to: things is a decision as well. www.westsussex.gov.uk/ • Make sure that you do plenty education-children-and-families/ of ‘thinking out loud’ to show your-space/life/advocacy/ or call: how you make decisions and 03302 228 686. solve problems. • Remember, the consequences For young people with mental of a choice can be better health challenges, MIND have understood by talking advocacy workers who can it through carefully. It’s provide support to young people important that your child aged 11 to 18 living in West understands that having the Sussex. For more information right to choose also comes go to: www.mindcharity.co.uk/ with responsibilities. services/services-in-west-sussex/ advocacy/young-peoples- Getting outside help advocacy/ or call: 01273 666950.
Many children choose to talk ‘There were lots of things I didn’t over serious decisions with their like, and I kept getting into trouble. parents or other adults they are Mum kept telling them but nothing changed. Sometimes I shouted at close to. But sometimes they may Mum, “You didn’t tell them!” Then she prefer to talk with someone who said, “Well, you tell them yourself.” is outside their circle of family and A lady came and helped me think how friends. In some cases, they may to say what was going on and she also prefer it if this person is the came with me in case I got stuck. one to support them in meetings. Then everyone listened. At the end of the meeting [my teacher] said she The Advocacy Service can help would tell the other teachers to read disabled children and young my plan and do it and I said I would sit people be heard. Advocates can away from the noisy boys. My mum go to meetings with a young said I did a good job.’ (Ben, 16) person, help them to make a
- 36 -
Involving your child
Involving young people in what young people who have got transition planning complex communication needs are thinking. It is worth taking time to prepare for review meetings. Your young Your child may be the star of person may find it helpful to look the show at a person-centred at some of the resources that we transition review, but if they linked to in Chapter 1 – see pages have a more traditional review, 24 to 26 – the easy-read guides they may not be invited to all of may be a useful starting point it. Even if they won’t be there though, you can still find out for discussion without feeling their views and put across how overwhelming. they feel at the meeting. We assume below that they will be However, it’s worth remembering present – but you’ll find many that your child may need a period of the points are still relevant if of time to look at the information they’re not there for the whole and to think things through, so meeting and you’re expressing make sure you plan sufficient their views for them. time for this rather than leaving it until the week of their review. Helping your child to plan for Your child will be best able to a meeting doesn’t have to contribute if he or she has been happen formally. Sometimes given sufficient time to consider it’s more productive to do five their wishes and feelings, go or ten minutes thinking a day through their options and prepare over several weeks, rather than what they want to say. attempting longer sessions. And it’s always more manageable to It’s also worth doing this as ask one question at a time. some professionals struggle with empowering young people to ‘Oliver’s really good at the whole make decisions on their own and education side of things, because he also with taking into account their likes learning, so he’s interested in parents’ views. And sometimes talking about what he wants to do they don’t attempt to find out next, what he’d like to try.’
- 37 - If it’s possible, avoid closed speak, we should not assume questions such as, ‘Do you like that they don’t have views and that?’ as it invites only a ‘yes’ or preferences. Encourage your ‘no’ answer. It is better to ask open child to choose how they want to questions like, ‘What do you like record their views. Think about about that?’ as this will allow your using photographs, drawings, child to give a fuller response. audio or DVDs as well as observation to ‘catch and record’ Repeat back what you think your their wishes and feelings. Simple child is telling you, to check that questions in word, sign, symbol you’ve understood them. Avoid or pictures can help many young assuming what’s important to people make sense of things and them. If it’s not easy to be sure make their contribution. what they mean, acknowledge you’ve got lost and start again Tips to help you prepare rather than trying to keep going when you’ve lost the thread. • Check your child knows what the meeting is about, who Be patient and resist the urge to will be there and what sort of fill silences or finish sentences. things they may say. If you Let your child know there are no aren’t sure yourself, you’ll right or wrong answers and you need to find out. won’t be cross with whatever • Make time to talk with your they want to say. child about any changes in their circumstances, their ‘Sometimes I’m not sure what Alice needs and your needs. means, so I say, “Did you mean this, • Take a fresh look at their EHC that, or something else?” and I sign Plan as there may be things the choices. She uses the sign for that need updating. ‘different’ for something else.’ • It is easy to unwittingly build value judgements into Of course talking and writing questions by asking your are not the only means of child ‘why?’ Try instead to communication. If a child can’t say things like ‘tell me more
- 38 -
Involving your child
about that’. Ask more open to make your own suggestions questions and repeat their and ask for changes if you think answer to check you’ve certain things won’t work. understood the point they are making. Ground rules before the meeting • As the meeting gets closer, could include: make sure copies of your child’s views, whatever the • A meeting place that’s format, are circulated to accessible and familiar. everyone attending the • A meeting time when the meeting, along with your young person’s best able to advice and those of others. contribute. • Find out if your child wants • Clarity over whether your to attend all or part of the child will be there for some meeting, or if they would like or all of the meeting and, if another person to present they’re only there for a part of their views, and who they’d it, which part it is. want that to be. Would they • The opportunity for your child like to invite a friend or an to choose where they sit. advocate? • If your child usually needs someone to interpret for them, Setting ground rules for the clarify with them and the meeting school who that will be before the meeting. It’s confusing if ‘One of the support staff said, “Chris, how can you say that?” and he just everyone tries to help. clammed up and didn’t say any more.’ • Agreeing what will happen if the young person wants to Meetings are more successful leave the meeting or take a when there are clear arrangements break. in place that take account of a • Getting the meeting recorded young person’s particular needs. or someone nominated to take Check with the school what the notes on your child’s behalf if ground rules are and be prepared that’s what they want.
- 39 - • Checking if there’s anyone ‘The Casework Officer said, “I’m here the young person wants to be to write down what everyone thinks present for only part of the should happen next.’ meeting. After the meeting Ground rules at the meeting could include: • Check out how your child feels. Maybe he or she wants • Introducing your child to to go over what happened. Perhaps there is something anyone they don’t know at they would like done the meeting and explaining differently next time. why they’re there. • Make sure your child gets a • A reminder that it’s your copy of what was agreed in child’s meeting and what a format that is accessible to needs to be discussed should them. be central to their future. • Suggest your child keeps their • Agreeing not to challenge notes, along with the minutes what he or she says, interrupt and recommendations, them, or finish their sentences somewhere safe in case they for them. want to look at them again. • Checking your child feels their • If your child has clear views questions have been answered about important matters, and, if not, giving them the make sure they’re reflected in opportunity to ask again. amendments to their EHC Plan. • Recapping what each person • If it hasn’t been possible to has agreed to do after the act on your child’s wishes, meeting. find out who will explain the • Checking your child reasons for the decision. understands what has been • Encourage your child to agreed and what will happen be involved in putting next. recommendations into practice.
- 40 - Involving your child
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. For more on this turn to page 23. There are also links to national organisations who may be able to offer information and support on pages 24 to 26.
- 41 - 3 Further and higher education
Further education (FE) is learning advice on how you and your child mostly for young people between can make the best choices for the ages of 16 and 19. It includes their future. school sixth forms, sixth form colleges and further education It is important to remember that (FE) colleges. Some FE is open to when your child reaches 16 years older people who wish to catch of age, their views, wishes and up on their education, or do aspirations are recognised in law vocational and access courses. as the priority.
Higher education is provided by If they need help to think through universities and similar institutions their options, they can get advice that offer degrees and Higher from West Sussex SENDIAS. National Diplomas (HNDs). Its Young People Advisers can support young people up to the Further education is often the age of 25. For more details, call: first option for our young people 03302 228 555 or email: when they leave school. Initially, [email protected] the range of choices can feel (parent carers) or overwhelming, but many of us [email protected] found we quickly narrowed it (children and young people). down to just a few possibilities. The end of Year 11 – what This chapter will examine those next? options in more detail, tell you about the kinds of additional All young people are entitled support available in further and to free full-time education until higher education and give you they are 19. The changes to
- 42 - education law, called ‘Raising the • Some young people may want Participation Age’, means that to leave education behind and all children and young people look for a job, but remember have to stay in some form of they’ll now have to combine education or training until their this with training until they’re 18th birthday. There are some 18 years old. exceptions, such as those joining the armed forces, young people From Year 9 onwards, your child’s who become parents and those Annual Review should focus who are full-time carers for family on outcomes for preparing for members. However, this does not adulthood, which we outlined mean that they have to stay on briefly on page 12. You can find out at school when they finish Year more about outcomes by going to: 11. Options open to your young www.preparingforadulthood.org.uk. person include: By the time your child reaches the • Staying on at school, if the end of Year 11, their chosen path school has a sixth form. should be clearly mapped out in • Going to a sixth form college. • Going to a further education their EHC Plan.All young people (FE) college. should be made an offer of • Going to a special school sixth learning by the end of September form such as Manor Green after they complete Year 11. College or Oak Grove College, if they have complex needs. ‘I didn’t know Beth had a right to full- • Going to an independent time education until she’s 19. No one explained it to me.’ special school or college, which could be residential. • Doing work-based training Getting the right paperwork such as an apprenticeship. in place • Combining part-time accredited education Under the old system, a child’s and training with work or Statement of SEN would cease volunteering that lasts for when they left school. Under more than 20 hours per week. the new system, EHC Plans can
- 43 - continue if needed until at least 19 Further Education (16-19) years of age, and in some cases up to the age of 25. Thinking about post-16 options
If your young person doesn’t Your young person’s Year 9 annual have an EHC Plan, but feels they review kick-starts the decision- need more support than their making process with the first school or college can offer they steps in transition planning. will be able to request an EHC The school should provide Needs Assessment, with a view to information on post-16 options getting an EHC Plan. Considering at this point, and as your child an EHC Plan is a good idea, moves through Year 10 and 11. especially if you feel your young person will continue to need There are many different courses support until they are 25 years available, so it is important to old. You can find out more about choose one that is the right level EHC Needs Assessments on West for your child. Ask your child’s Sussex’s Local Offer, see page 4 teachers for their input. College for details. You can also get advice websites can also be helpful. from West Sussex SENDIAS, see page 18 for details. ‘I think what I found really hard was there are loads of options out there, If you feel you need further advice but you have to do all the work. You on SEND law and education, know, you’ve got to find out what you can refer to IPSEA’s section they are and then try and get your for young people aged 16 to 25 head around them all.’ years: www.ipsea.org.uk/pages/ category/young-people-aged- 16 to 19 Study Programmes 16-25. As well as guiding you through the EHC process, it also Study programmes are publicly has model letters, which you can funded programmes of learning download and adapt as part of for 16 to 19 year olds (or 16 to 25 your application. year olds where the student has an EHC Plan). The programmes
- 44 - Further and higher education are based on a young person’s be a broadening, generalising prior attainment and are designed or consolidation of skills. to help students meet their • Include qualification(s) educational and career goals. that are of sufficient size and rigour to stretch the For example, if a young person student and are clearly linked is academically able, they may to suitable progression study GSCEs or A levels. Other opportunities in training, students may prefer to take a employment or higher levels different route and study for of education. However, an apprenticeship or gain other students with a learning vocational qualifications such as a difficulty and/or disability BTec or HND. can be exempted from this principle altogether if their Because providers have flexibility needs are better met and in the design, delivery and progression better supported content of a study programme, through structured non- it means that they can create qualification based activity. highly personalised programmes • Require students who do for young people with a learning not have GCSE grade 4 difficulty and/or disability. (what was grade C) or above in Maths and English to Having said this, they still need continue studying these to meet the Department for subjects as part of their study Education’s principles, which programme. Students with state that a study programme a learning difficulty and/ must: or disability need not have their English and Maths • Provide progression to a learning accredited but do level higher than that of the need to have skills in these student’s prior attainment, two areas included in their although for students with programme, as relevant to a learning difficulty and/or their individual needs and disability this progression may planned progression.
- 45 - • Allow for meaningful work- College Network and the experience related to the Award Scheme Development vocational area of the study and Accreditation Network programme, which develops (ASDAN) are courses that focus employability skills and/or on independence skills. They are creates potential employment available in a range of subjects options. For a small number that focus on independence of students with learning skills and are designed for difficulties or disabilities students who want to build their where employment is not knowledge but may not feel their aim, even in the longer ready to study at GCSE level. term, this principle can Students can progress from Entry be disapplied, but study level 1 through to Entry level 3 if programmes should cover they wish, with each level having more creative employment three sub-levels. Entry level 3 can opportunities for this group help prepare students to access of students. further courses such as GCSEs, • Include other activities NVQs and BTECs. unrelated to qualifications that develop skills, attitudes GCSEs and A levels cover and confidence to support the specific subjects like Maths, student’s progression. English, History or Science. These are sometimes referred to as Course levels and qualifications ‘academic’ qualifications.
This is a brief overview, but you NVQs and BTECs are sometimes can find out more about course called known as ‘vocational’ levels and qualifications at the (work) qualifications that teach government’s website: job skills that are defined by www.gov.uk/what-different- employers. They focus on a qualification-levels-mean. particular work area such as engineering, floristry or childcare, Entry level awards and for example. certificatesfrom the Open
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NVQs (National Vocational Supported internships are Qualifications) can be studied another option open to young by people in employment, or by people aged 16 to 24 who have school and college students who an EHC Plan. The internship is are on a work placement or a structured study programme working part-time. NVQs don’t based primarily with an employer have to be completed in a set and aims to help young people length of time. There are five achieve paid employment levels – from Level 1, which through learning in the workplace. covers basic work activities, to Supported internships are unpaid, Level 5, which is designed for and last for a minimum of six senior managers. months. Alongside interning at the organisation, young people The BTEC is a vocational complete a personalised study qualification, often studied by 16 programme, which includes the to 19 year olds. The Foundation/ chance to study for relevant Introductory Certificate is qualifications, if appropriate, as equivalent to NVQ Level 1, the well as continuing with English BTEC First Diploma is equal and Maths. to NVQ Level 2 and the BTEC National Diploma is equivalent to If your young person is thinking NVQ Level 3, or three A levels. of following vocational or work- related learning at school instead Apprenticeships lead to work- of a traditional GCSE programme, based qualifications. They’re make sure the units and open over 16s who are not in full- certificates they’ve achieved at time education. Young people school are taken into account for doing apprenticeships have a the post-16 course they choose. contract of employment, usually These students could go on to for at least 30 hours a week and Entry Level Programme Life Skills they work towards a vocational or Entry Level Vocational Courses qualification. at FE colleges.
- 47 - If a young person over 18 Choosing a setting has missed out parts of their education because of periods of Sixth forms ill health for example and doesn’t have traditional qualifications, ‘Sixth form’ is effectively Years 12 they could do an Access Course to and 13 (and Year 14, if required). get into higher education. Access There are two types of sixth courses usually last for a year. form: those that are attached to a secondary school and sixth Tips to help you form colleges.
• Find out what level your School sixth forms and sixth young person is working at form colleges cater for 16 to 19 before choosing a course, year olds doing full-time courses. preferably in writing. Ask Young people with special needs the school, or your child’s attending sixth forms will be Educational Psychologist, expected to join mainstream if they have had a recent courses, but there’s learning assessment. support available to help them • Find out the level of the do this. Some colleges also have courses on offer and ask if specialist programmes, so it is appropriate support will be worth checking. If your child has available for your child. physical disabilities or sensory • Young people who do not impairments, check the access is achieve English and Maths suitable for them. GCSEs at grade 4 (what was a C) or above by the time ‘It’s more of an open environment in they are 16 years old are sixth form college. You’re left to your required to continue to study own devices more.’ (Lucy, 17) both subjects after the age of 16 alongside their other If your child wants to continue course(s). their education in a school’s sixth form, you’ll need to discuss this
- 48 - Further and higher education with the school in advance, but if • Oriel High School, Crawley the courses they want to do are • The Regis School, Bognor Regis on offer, the transfer should be • Sackville School, East Grinstead simple. If they want to move to • Shoreham Academy, a sixth form at another school, Shoreham contact the new school early on, • Sir Robert Woodard Academy, as the school will have its own Sompting application procedure in Year 11. • Steyning Grammar School, Sixth form colleges also have an Steyning application process. Your school • St Paul’s Catholic College, can tell you about this. Burgess Hill • St Philip Howard Catholic Schools with sixth forms in School, Barnham West Sussex • St Wilfrid’s School, Crawley • Thomas Bennett Community • Angmering School, College, Crawley Littlehampton • The Weald School, • Bishop Luffa School, Billingshurst. Chichester • Chichester High School, Tips for sixth form Chichester • Felpham Community College, • Check the deadline for Bognor Regis applying for sixth forms – your • Hazlewick School, Crawley child will get priority if you • Holy Trinity School, Crawley apply by the right date. • Ifield Community College, • Sixth forms offer a full range Crawley of academic and vocational • Imberhorne School, East courses: including ‘A’ levels; Grinstead BTEC at intermediate and • Littlehampton Academy, advanced levels; RSA courses; Littlehampton Open College Network • Midhurst Rother College, options; and the opportunity Midhurst to take (or re-sit) GCSEs.
- 49 - Further Education (FE) FE colleges in West Sussex colleges • Crawley College, Crawley Like sixth forms, Further • Chichester College, including Education (FE) colleges have Brinsbury Campus in a wide range of academic and Pulborough vocational courses and there is • College of Richard Collyer, a full application process when Horsham • Northbrook Metropolitan your child is in Year 11. FE colleges College, near Worthing also offer some higher education • Worthing College, Worthing courses, too. They tend to have a broader range of vocational Students can apply to go to any FE courses than sixth forms; college. There will be extra travel these courses equip students costs if they opt for a college further for particular types of work from home, but it may be worth including engineering, childcare, considering if the course is right. catering, hairdressing, IT or game development. Specialist sixth form education
They also offer specific courses For some young people with for students with special more complex educational needs, needs. These courses can run especially those with profound alongside mainstream classes and multiple learning difficulties for young people who have (PMLD) or severe learning additional needs, or they can difficulties (SLD) including autistic provide a stepping stone to spectrum conditions, moving to a more mainstream opportunities. mainstream FE college might not It’s worth bearing in mind that be appropriate. ‘full-time’ courses at FE colleges usually mean around 16 hours a You and your young person may week, so you will need consider want to consider one of the how your young person will fill specialist schools with sixth form the rest of their time. provision within West Sussex:
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• Fordwater School, Chichester independent FE colleges across (SLD/PMLD) the country and they specialise • Manor Green College, Crawley in post-16 education for young (generic SEND) people with special educational • Ingfield Manor School, Five needs. There can be waiting lists Oaks (Cerebral Palsy) of up to three years for places, so • Oak Grove College, Worthing it’s best to apply early. (generic SEND) • Queen Elizabeth II School, Getting a place at an independent Horsham (SLD/PMLD) FE college isn’t straightforward. • Woodlands Meed, Burgess Fees are high and you need Hill (generic SEND) to prove that the young person’s needs can’t be met in There are also a number of the mainstream FE sector by independent specialist schools collecting evidence to show that that educate children to 19 their needs, as described in their years. See the Further and higher EHC Plan, can’t be met in local education directory, page 260, for state provision. You will also need more information. to show that local colleges have been consulted before a specialist Independent FE colleges college can be considered.
If a young person’s needs can’t The views of the young person be met at a local college or sixth are also central to the application. form, a specialist college may It’s beneficial to include their be an option. However, funding views in the evidence you submit needs to be agreed with the local and you must show that they authority, the Education and want to go to the college. Skills Funding Agency and, in the case of a residential placement, Getting funding for an social care. independent specialist college is more complicated if you’re There’s a range of residential and applying for a residential place.
- 51 - Funding guidance is updated Getting the information you every year. need to choose
If the application is successful, Prospectuses funding will usually pay fees for up to three years (depending on Sixth forms and colleges have the young person’s progress) and prospectuses that provide could require joint funding with information about courses and social care and/or health services. facilities. You can ask for a copy of a prospectus by calling their After 19, the Education and Skills Admissions Office. Many colleges Funding Agency will approach also have them available to look local health and adult social at on their websites. If you don’t care services to share the cost have internet access at home, you of the ‘accommodation’ or ‘care’ can access them at one of West component of the placement. Sussex’s FindItOut Centres: If funding is turned down, the • Adur: Lancing Youth Centre, local authority will advise on next Penhill Road, BN15 8HA steps and you can ask for the • Bognor: Church Path, Glamis decision to be reviewed. Street, PO21 1DB Other options • Chichester: New Park Road, PO19 7XY Asphaleia Training runs provision • Crawley: Centenary House, across West Sussex for young Woodfield Road, RH10 8GP people aged 14 to 25 who may • Horsham: Youth Hub, Hurst find mainstream education a Road RH12 2DN struggle. They provide additional • Littlehampton: 82 Wick support to enable young people Street, BN17 7JS to make a good transition • Mid Sussex: 60 Park Road, into further education or the Burgess Hill, RH15 8ET workplace. For more information, • Worthing: 24 Marine Place, go to www.asphaleia.co.uk. BN11 3DN
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Inspection reports Taster days
Sixth forms and colleges are Local sixth forms and colleges inspected by Ofsted. You can read offer taster days, open days and the reports on the Ofsted website open evenings each year. Check at www.ofsted.gov.uk. They can their websites for details. be quite wordy, but they give useful information on strengths Other information and weaknesses, as well as indicating how establishments The National Careers Service support students and measure website has information quality. If your young person and advice about education, needs help making sense of training and work. Visit https:// Oftsed reports, contact West nationalcareersservice.direct. Sussex SENDIAS. It has Young gov.uk. Or you can speak to a People Advisers, who can support qualified adviser by contacting them with this, see page 18 for their helpline, which is available contact details. from 8 a.m. to 10 p.m., seven days a week on: 0800 100 900, or School visits for text messages: 07766 413219. You can also speak to an advisor Special schools and mainstream via their webchat service. schools usually invite local colleges to visit and explain Independent FE Colleges what they offer. Some pupils will also have done a ‘school link’ The NATSPEC website: programme, where they may www.natspec.org.uk is packed go to visit local colleges. If your with information about specialist young person wants to access further education and includes a a link course from Year 10, the search function so you can look school would need to arrange this for colleges, as well as useful directly with the college. information about applying for courses.
- 53 - Questions to ask to help you • When should we apply for the consider options: course? • What reasonable adjustments • What are my child’s needs, are needed to help my child what do they like doing? with the application process, • What courses are available including the interview? and will they meet my child’s • Will my child need transport needs? to and from the college and • Will my child need to study who will arrange it? Maths and English in addition • Will my child be eligible for to the main course? financial help to go to college • What are the advantages and and how can I apply for it? disadvantages of staying on at • If local choices aren’t a school sixth form or opting appropriate and my child for a sixth form college? wants to consider an • What do local further independent residential education colleges offer? college, who will pay the fees • What are apprenticeships and and how do I find out more? traineeships and how do they • What happens after they work? finish the course? • How many hours a week is the course we are looking at? • What will my child’s choice Tips to help you offer them? • What course (or job) could • Discuss education or they do after this? apprenticeship and • What support is available to traineeship options with your help with the transition from child’s careers adviser. school to the new setting? • Find out what level your child • What additional support is working at so you’re sure arrangements are provided? you are asking about a place • When would my child get on a course pitched at the their detailed support plan right level. and when could they meet • At sixth form, or sixth form support staff? college, students may not be
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timetabled to attend lessons EHC Plan will automatically for a full day five days a week be forwarded to a college. and class sizes vary. Check Make copies yourself and send what support is available paperwork directly to the when lessons aren’t running. Learning Support Coordinator • Also bear in mind that in a or Inclusion Manager to further education college ensure they receive them prior ‘full-time’ education is usually to your visit. around 16 hours per week. • Take more copies of your If your child is not able to child’s paperwork with you study or look after themselves when you visit, along with independently in the free other relevant information hours how will you manage? to support your discussion • Have a look at the colleges with the Learning Support and ask about the extra and Coordinator or Inclusion specialist support they can Manager at the sixth form or provide – it can vary between FE college. establishments. • Ask what previous students • Often, prospectuses don’t went on to do next. mention provision for students • Arrange to look around the with emotional or behavioural college when the students are difficulties. If it is relevant in lessons. to your young person, ask whether and how the colleges ‘One of the reasons I picked [the cater for this type of need. college] is that I don’t have to go up • If you think what is offered any stairs.’ (Andrea, 17) locally is unsuitable, consider looking at colleges further Applying to sixth forms afield. and colleges • Identify who can help at each college and get their contact Your child’s school may manage details. the application process if you’re • Don’t assume your young applying to a college in West person’s school reports and Sussex. Check with them.
- 55 - If the school isn’t managing the Preparing for the interview process, make sure you get a prospectus for the institution Many parents worry about whether you’re interested in. It usually has it is acceptable for them to go with an application form at the back their young person to the interview. that you fill in and send off. Colleges often expect young people to discuss the details and If your child hasn’t heard back from arrangements directly with them. the sixth form or college within a You could ask your child and be month of sending the application guided by what they want – if form, offering an interview date, they feel they want you there to follow this up with the college support them, that is fine. admissions department. Contact the Admissions Interviews and offers department in advance to discuss the reasonable adjustments Some sixth forms or colleges they may need to make for your offer an initial interview that child’s interview. There may be a includes guidance for choosing group interview, a written task or the appropriate course, especially another activity that is unsuited if the student is unsure or has to your child, so you may need to unrealistic expectations before discuss how the process can be the course interview. made accessible to them.
At the interview, the college fills ‘We hadn’t prepared Beth for this in a report that is signed by the because we had got used to it being student and the interviewer. The second nature to interpret for her, or report recommends a place on a to think on her behalf. Suddenly this particular course and the young person was talking to her and she was person may be verbally offered just blank. We knew she was nervous and although she’d written out a list a definite or provisional place at of questions to ask, it was just as well that point (depending on their we went because he didn’t ask her exam results). A registration fee if she had any questions so she just may be charged. didn’t ask any.’
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Questions to ask (before or at • How are work placements the interview) arranged? • Is transport to college or to • Do tutors have experience or work placements arranged? training in the young person’s If it is, how and when do we special need? need to apply? • Will there be support for your • Is there support if the child in class and at what level? young person is struggling • Will learning support be in emotionally? place from day one and how • Will speech and language long will it be offered for? therapy support be available? • Will the same support staff be • What days of the week and with the young person for the times will the programme whole course? run? (full-time courses don’t • What size are the classes? always run every day). • What does the course involve, • Will the course definitely run for example are there theory even if only a few enrol? classes, essays or group • What other options are discussions? available if the course does • What’s the timetable like for not run? each day? • How many hours of After the interview independent study is expected each week? Is there A copy of the report that was any support available for this, filled in at the interview will such as a teaching assistant be sent to your young person available to all students formally offering a place on the working in the library? course. An offer of a place may be • What happens between made subject to getting certain classes? Is there any GCSE results, but unconditional supervision? offers can be made for • Where do students take their Foundation Level courses. Your breaks? young person will be asked to
- 57 - complete an acceptance form and ‘The woman said they would get the return it within two weeks. tutors to only require him to do the minimum so that he didn’t fail and The colleges arrange introductory lose his confidence. They said if he days for students to meet tutors needs extra learning support, they will try to provide it as he has missed and other students. It’s a good seven years’ schooling due to his ME. idea to attend. They were really accommodating.’
Support in further education What kind of additional It’s helpful to know about the support is available? extra assistance offered to An EHC Plan will detail specific students when thinking about provision for your young person, college options. Sixth forms and but learning support is also colleges cater for young people available for young people who with special needs, but the way do not have an EHC Plan. They they do it varies. will be part of what is known as the ‘SEN Support’ group. Post- Colleges and sixth forms need 16 educational providers receive to take into account the Equality additional funding for these Act 2010, which says they must young people, so a wide range of make ‘reasonable adjustments’ support should be available from so disabled students are not Learning Support departments. treated less favourably and not Types of support could include: discriminated against. • Use of specialist software and All colleges and sixth forms have equipment. a Single Equality Scheme, which • Reasonable adjustments to you can usually find on their teaching and learning and to website. Ask them how they physical access. put this into practice for young • Help with literacy or people with special educational numeracy for individuals or in needs and disabilities. small groups.
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• Sessions with mental health problems and personal difficulties. workers for learners with Colleges also have counselling mental health difficulties. services, which can help young • Support for learners with people with personal matters. dyslexia or dyspraxia. • Additional specialist teaching, What is not available? for example for students with dyslexia, dyspraxia or It is unlikely services like discalculia. educational psychology, • Provision for specialist services. speech and language therapy or physiotherapy will be made ‘I said, “What level of support would available at mainstream further you give, these are her difficulties,” education colleges, unless it has and they said, “Oh, well you apply to been included in an EHC Plan. the college and then we’ll tell you.” I said, “No, I want to know what Specialist colleges may offer sort of support you will give before I apply.” So I had to make another some or all of these services, but appointment to see a learning support you should talk to someone from person. We had a whole hour with the college’s Learning Support them and it went quite well.’ Team to discuss your child’s needs and find out what support It is a good idea to ask the the college can offer them. education provider what sort of additional support might be Tips to help you get the right available, as it may vary from one support setting to another. • If your child’s staying on at a Most colleges have student school sixth form talk to the support teams, who offer SENDCo to see what support information and help on things he or she will get. like financial assistance, welfare • Don’t assume appropriate services, accommodation, careers support will automatically advice, health issues, study be in place for the young
- 59 - person. Make contact with ‘I think the most useful thing was the Learning Support Team at actually speaking to other parents the college or sixth form and who have already gone further down arrange a meeting to discuss the line.’ how the needs of the young What if things go wrong? person can be met. • Ask for confirmation of the Even with all the preparation level of learning support in the world, things can still go available to be sent to you in wrong. You will also have less writing before the start of the contact with sixth form or college course. than you are used to having while • Ask whether the college your young person was at school, or sixth form has access to so it may be harder to spot issues. specialist support and if not, whether they will buy it in. If there are problems, talk to staff at the sixth form or college. They ‘A tutor seems to have time to help may be able to find a solution. him and he is very understanding. He Contact Learning Support as well said, “If he wants to put something on as your child’s tutor. tape instead of writing I’ll let him do that.” It makes all the difference.’ If your son or daughter is struggling with their course, you We can’t stress enough the may be able to find other courses importance of doing your own they can transfer to quite quickly, research. Professionals will tell you but it’s not always so simple. about special courses offered at different colleges, but it’s unlikely If the worst happens and your they’ll pass judgement about the child leaves the college, they quality of them. Find out as much don’t lose their right to further as you can about the courses your education and training up to the child is interested in and the support age of 19 – if they have an EHC available to them, that way they are Plan, it can be free up to the more likely to work out well. age of 25, provided there is an educational objective or outcome.
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Financial help with 16-19 confirm that a young person education meets one of the above criteria.
All young people between 16 There are also limited and 19 years have the right to discretionary bursaries, which a free full-time or part-time can be used to support students education, provided they satisfy facing genuine financial barriers national residence conditions, like costs of transport, food or but additional financial help is equipment. Sixth forms and available to some students. colleges decide how much is paid and how often. Speak to Student Bursary fund Support services or a tutor to find out whether your child is eligible. The 16 to 19 Bursary Fund provides financial support to help students For more information, go to the overcome specific barriers so they Student Bursary Support Service can remain in education. There at: www.gov.uk/guidance/ are two types of bursary. student-bursary-support-service, or call their helpline: 0800 121 8989 The Vulnerable Student (Minicom: 0800 917 6048) or email: Bursary is available to defined [email protected]. vulnerable groups of students. These are: students who are There are also two schemes in care; care-leavers; students offering residential support. The who receive Income Support or Residential Bursary Fund provides Universal Credit because they are financial help for students financially supporting themselves attending an institution delivering and someone who is dependent specialist provision. on them and living with them, such as a child or partner; and The Residential Support Scheme students who receive Universal provides financial help to students Credit or Personal Independence who need to live away from Payment (PIP) in their own right. home to study because the same Education institutions must (or similar) substantial Level 2
- 61 - or Level 3 quakification is not for education, care or supported available within daily travelling employment. distance. For more information, go to: https://www.gov.uk/ Young people don’t have an guidance/16-to-19-education- automatic right to stay on in financial-support-for-students. education after they turn 19, but there are options and, in Other financial help some cases, they may be able to stay in education until they’re There may be other funds 25. You’ll need to get individual available to help with the cost advice, so ask your child’s school of fees, equipment, childcare or or college for help with with this. travel. Students don’t have to be For some young people this may on benefits to get financial help – be the point at which to consider but funds are limited and do run a specialist further education out, so you should apply as early college, see page 51 for more as possible. information.
You’ll need to fill in forms and ‘After college I’ll be looking for a FE provide evidence and financial college like Plumpton. I would like him details, so make sure you to stay in education until the last day, read through the institution’s as long as possible.’ guidelines on financial assistance before making an application. Young people who have done A levels or equivalent qualifications may want to move onto higher What happens after 18/19? education. In the last year of formal education, decisions about Higher education your child’s future learning or working life need to be made. Going to university or a college The school or college programme that offers higher education includes links with local options (including FE colleges and
- 62 - Further and higher education specialist institutions like art courses on offer is detailed in colleges) gives young people over university prospectuses. You can the age of 18 the chance to acquire also find lots of useful information more academic qualifications. on the UCAS website at: www.ucas.com. Further education colleges often provide some higher education Additional support in higher options – Higher National education (HE) Diplomas (HNDs), higher level NVQs and degrees in partnership Under the Equality Act 2010, with universities, for example. it’s unlawful for universities and colleges to discriminate against For part-time courses, you apply disabled students. They have direct to the college, for full- a legal requirement to make time courses, the application ‘reasonable adjustments’ so that process is through the University disabled students are not put at a and College Admission Service substantial disadvantage. (UCAS). Disabled Students’ Allowances (DSAs) can offer All higher education institutions financial support – see page 66. should have a Disability Equality Scheme that sets out how they Just as it was for choosing post- intend to improve disability 16 options, research is really equality across their organisation. important in making the right choice for your young person. Telling the institution about your Don’t encourage your child to child’s disability in advance is apply for a place until they’ve advisable, particularly as EHC visited the university and Plans lapse once young people considered the course carefully, begin university, so you must be as changing courses later can proactive in talking to the setting affect funding. to ensure that they understand your young person’s needs and The range of degree and higher can arrange for support to be put national diploma or equivalent in place before their course starts.
- 63 - For advice, you could call • Are all the buildings physically Disability Rights UK’s dedicated accessible? Disabled Students Helpline: • Are there any particular 0330 995 0414 or email facilities for disabled [email protected]. students? They also have online information • Are there any current and fact sheets to download at: students with a similar www.disabilityrightsuk.org. disability? If so, what type of support do they receive? Most universities and colleges • Who will help organise have disability coordinators or support? advisers. Contact the Disability • Is there help to apply for Coordinator or Learning Support additional funding if needed? Coordinator for the university • Are methods of teaching and to discuss access and support assessment appropriate? arrangements and to set up a visit. • What would happen if there’s a problem after starting the Visiting the university and course? speaking to the staff about your • Is there specialist university young person’s needs enables accommodation available, you to discuss any adaptations for example rooms on a quiet he or she may need and to talk corridor, or with accessible, to academic staff about specific course information. private bathrooms?
It’s worth taking a list of questions Student Unions and other help to ask members of staff and students, as well as your young Every university and most person’s EHC Plan, if they have colleges have a Students’ one. What you want to ask will Union (SU) that’s affiliated to depend on your child’s disability the National Union of Students or additional needs, but these are (NUS). They also have welfare some examples: services and can be a useful
- 64 - Further and higher education source of information and Funding for higher education support when you are considering applying to a university, or when Going to university or college is you have been offered a place a big investment, but students there. The Students’ Union don’t need to pay any tuition fees office contact details should be up front. Instead, the fees are included in the information you covered by a Tuition Fee Loan. get on the institutions your child The highest amount an English is interested in. Most universities university can charge for annual will also have other support tuition fees is currently £9,250. services for students, such as a Student Finance England also student counselling service. provides Maintenance Loans, which can help living costs like Tips rent, food, books, transport and entertainment. • Ask if there are any students at the place you are interested The easiest way to apply for in who have similar needs to student finance support is online your young person. If so, try at www.gov.uk/student-finance, to speak to them if you can or you can call their helpline: as this can help the young 0300 100 0607 (textphone: person assess whether the 0300 100 0622). course and environment is right for them. The website has a section for • It can be useful for you to talk parents about higher education to the student’s parents to get that should answer some of your practical information and tips questions. Your child shouldn’t so you can help your young wait until they have a confirmed person to enjoy their new place; they need to apply as soon independence by ensuring as they accept an offer. they settle in well. Make sure you do your financial homework before applying and
- 65 - read A guide to financial support get depends on the type of extra for new full-time higher education help they need – not on your students published by Student household income. DSA can be Finance England. It’s available used for: from schools and colleges and online at www.practitioners.slc.co.uk. • Specialist equipment needed You can also find out more at: for study such as computer www.gov.uk/student-finance. software, for example. • Non-medical helpers, like a If your child has a disability or note-taker (scribe) or reader. specific learning disability, it’s a • Extra travel costs because good idea for them to contact of your child’s disability (see universities and colleges to Chapter 11 for more about discuss their requirements before help with travel costs). sending their application to UCAS. • Other costs, such as Braille papers for example. Disabled Students’ Allowance It’s best to apply for DSA as early (DSA) as possible, don’t wait until your child has a confirmed place at Disabled Students’ Allowance university as only limited support (DSA) is a grant to help meet may be available from the the extra costs students can face university until the DSA has been as a direct result of a disability, organised. Visit www.gov.uk/ ongoing health condition, mental disabled-students-allowances-dsas. health condition or specific learning difficulty. It helps If your young person wants to be disabled people study on an considered for DSA, complete a equal basis with other students. DSA1 form. Your young person will need to provide up to date DSA is paid on top of the evidence of their disability or standard student finance package condition (for example, a letter and it doesn’t have to be paid from a doctor or specialist or a back. The amount your child may ‘diagnostic assessment’ from a
- 66 - Further and higher education psychologist or specialist teacher). If they last had an assessment when they were under 16, it will need updating. You’ll have to pay for any tests to establish whether your child qualifies for DSA. If you can’t afford to pay, you may be able to get financial help through the institution’s Access to Learning Fund.
If your child qualifies for DSA, Student Finance England will advise whether your child has to attend an assessment centre to work out what help they will need. The centre will write a report outlining what is needed and will send it to Student Finance England. The centre should also send a copy to your child.
For a guide to Disabled Students’ Allowances go to: www.gov.uk/ disabled-students-allowances- dsas/further-information.
To find out how student income such as bursaries, loans and grants may affect existing benefits, speak to West Sussex County Council’s benefits advisor, Robert Hayes. For contact details, see page 107.
- 67 - 4 Social life
Friendships and having a social Experiences at school or college life are an important part of can affect young people’s access adulthood. Having friends who to friends and leisure outside share similar interests, have fun school. National research has with us, laugh at the same sort of found that many young disabled things and share both the good people experience isolation, and difficult times is immensely loneliness and exclusion. valuable. Young adulthood is the time when many people make ‘Ben’s doing really well at the day friendships that will last a lifetime. centre… He’s starting to make friends with his peers, but the fact is they’re For teenagers with special needs, so far away. It would be lovely to invite some of them back, if there making friends and meeting up weren’t issues with transport. That’s and going out with them can one of the downfalls about him going be trickier than it is for other to a day centre out of his community.’ teenagers. This may be because of mobility issues, not being Many parent carers find that able to travel independently they have to do a lot to support or because he or she has their child’s social life and to communication difficulties. help them meet new people or maintain friendships. Sometimes, ‘He’ll go out now and again, but they may find that they have to if he does go anywhere, we have ‘share’ friends with their children to take him there and pick him up, because he can’t really get the bus because of the difficulties to go on his own.’ they face making their own friendships.
- 68 - ‘Friendship is the one area I get really Local clubs and activities sore about and every once in a while I have to take a step back. On the one hand, Oliver’s great company, he’s There are lots of clubs and such a good laugh and we are good activities young people can try mates but I am his mum and there are locally. Some of the ones listed times when I think, “Where are your below are open to children own friends?” And what I find I have and young people aged from to do is double my friends up, and five upwards, while others are they’ve got busy lives. I’ve got to book specifically tailored for teens and them up twice. “If you come round at young people. this time and Oliver can talk and then can we please go out another time when I can talk!” It’s tricky.’ It’s a good idea to check whether a venue or activity listed here is a Making friends Compass Card partner as further discounts may be available – see Many of us meet our friends the Compass Card entry for more through a common interest – work information. for example, a sport, an evening class, or through other friends. Many venues also run Assisted Parents whose children need more Access schemes, which entitle support with friendships might a disabled person’s carer free start by thinking about what their entry – ask when booking and young person enjoys doing and take a copy of your young then look for a club or an activity person’s DLA/PIP award with you where they can meet other young to show at the till. people with similar interests. At the time of writing the It can be helpful to think about following information is correct, what other young people are however it is not exhaustive and doing, or to find places nearby that your child can go to on their own. we would recommend cross- checking individual providers with ‘The pub’s just over the road, so he will the Local Offer. go over there, which is really good.’
- 69 - Listings marked (SB) are Short Albion in the Community (AITC) Breaks providers. (SB) runs disability-specific as well as inclusive football sessions Active Sussex offers for young people with conditions opportunities for young people such as cerebral palsy, autism with disabilities to participate in and Down syndrome, sensory sporting activities across Sussex. impairments and physical disabilities, at locations across Tel: 01273 643869 West Sussex. Email: [email protected] www.activesussex.org Also see Gully’s Days Out.
Adur Special Needs Project Tel: 01273 668590 (Shoreham) runs various clubs for Email: disability@ five to 15 year olds with special albioninthecommunity.org.uk needs in Shoreham and the www.albioninthecommunity.org.uk/ surrounding area. disability
Tel: 07788 239634, email: info@ Allsorts Youth Project offers adurspecialneedsproject.org.uk support for all young people aged www.adurspecialneedsproject. 5 to 25 who are LGBTU (lesbian, org.uk gay, bisexual, trans, unsure) or questioning their sexuality Air Arena Trampoline Park or gender. Runs youth clubs in (Chichester) has a variety of Horsham and Chichester (one for activities, including trampolines those aged under 16 and one for and climbing walls. Offers Helping 16+), and an emotional support Hands sessions for children and phone line called Talk it Out. adults with learning difficulties or additional needs. Tel: 01273 721211 Email: [email protected] Tel: 01243 940530 www.allsortsyouth.org.uk/ Email: [email protected] westsussex www.airarena.co.uk/chichester.html
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Angling4Education (SB) runs Ariel Othello’s (Burgess Hill, inclusive fishing and forest Crawley, East Grinstead) Saturday schools sessions for young people daytime and weekday evening aged four to 18 with SEND. Some dance, drama, music, and singing sessions are also open to parents for children and young people and carers. with SEND.
Tel: 01273 968126 or 07795 410812 Tel: 01444 250407 Email: Email: [email protected] [email protected] www.arielproductions.co.uk/ www.angling4education.com/ muse/special-needs.html sendprovision Arun Sports Association for the Apuldram Hub Club is a social and Disabled (Bognor Regis) runs activities club held in Chichester sports for people with disabilities for adults with learning disabilities. aged nine and above in Bognor, Chichester and Littlehampton.
Tel: 01243 783370 Tel: 01243 583868 Email: [email protected] Email: [email protected] www.apuldram.org/hub-club www.a-s-a-d.org.uk
Arena Sports Centre (Bognor Arun Sunshine Group is a Regis) runs a ten-week Access 4 All Littlehampton social club for scheme for 16 to 25 year olds with adults with learning difficulties. SEND. Includes initial consultation and health screening. Free Tel: 01903 714930, email: admission for carers exclusively [email protected] supporting young people and www.arunsunshine.org.uk adults with SEND. Ashdown Centre (Worthing) Tel: 01243 870000, email: (SB) runs short breaks for young [email protected] people with special needs. www.arenasportscentre.co.uk Ashdown Youth for those aged
- 71 - 12-18; Ashdown Extra for those Autism Sussex, see Aspens aged 18-30 and Ashdown Siblings for over-fives who have brothers/ Barnardo’s Moving Forward sisters with SEND. Project (SB) Short breaks, providing sitter services, Tel: 01903 528600 befriending and individual or 01903 528607 (Ashdown Extra) support. Emphasis on building Email: [email protected] confidence and independence www.guildcare.org/ashdown-centre through inclusive play, play/ holiday schemes and enabling Aspens (SB) is the new brand social inclusion and skills. for merged charities Autism Sussex and Pepenbury. It offers Tel: 01293 610692, email: individualised support to children [email protected] and adults with disabilities www.barnardos.org.uk/moving- including autism and other forward-project-west-sussex- complex needs, with a focus short-breaks/service-view. on transition to adulthood and htm?id=261814047 independent living. Bluebird (Crawley), Blue Oasis Tel: 01892 822 168 (Horsham) and Blue Starfish Email: [email protected] (Worthing) run club nights and [email protected] autism-friendly film screenings [email protected] for young people and adults with www.aspens.org.uk learning disabilities or autism and their friends. Asperger’s Syndrome Self Advocacy (ASSA) runs a social Tel: 01293 585350 (Crawley), and activity club in Chichester and www.crawley.gov.uk/ other meetings in Littlehampton. disabilitysport
Email: [email protected] Tel: 01403 215216 (Horsham), www.facebook.com/ www.facebook.com/ ASSAWestSussex HorshamBlueOasisClub
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Tel: 01903 202030 (Worthing) Tel: 01403 211311 www.worthingmencap.org/ Email: enquiries@ bluestarfish.php thebridgeleisurecentre.org
Boom Tribe (Horsham) is an Brighton and Hove Albion inclusive samba band that has recently introduced a provides young people with the wristband scheme for fans opportunity to socialise and of all ages who have hidden perform at events. disabilities such as autism. It discreetly identifies the user Tel: 01403 215216, email: to all staff at the ground so [email protected] that they know the supporter may need extra support in the Branching Out Club (Chichester) stadium. For more information (SB) is a monthly sports club for or to ask for a wristband to be children and young people aged sent to you contact: two to 18 years with disabilities. Held at Westgate Leisure Centre, Tel: 0344 3246282 (ask for activities include football, supporter services), email: badminton, basketball, bouncy [email protected]. castle, soft play and table tennis. Site has hoist-assisted toilet. Brooklands Go Carts (Worthing) offers speed-adjustable karts Tel: 01243 785651 and assisted drives, where an www.everyoneactive.com/centre/ instructor works the pedals. westgate-leisure-centre Tel: 07867 762106 The Bridge Leisure Centre www.brooklandsgokarts.co.uk (Broadbridge Heath) (SB) runs discovery open days with a Buddy’s Music Group is variety of activities for disabled held weekly at Buddy’s Café, children and young aged up to 18 Worthing. Sessions are run by years, their families and friends. Daniel Gilmore of Sussex Music Also has a sensory room. Workshop. No need to book.
- 73 - Tel: 01903 202030 or 07771 880482 bowling, trampolining, or head www.worthingmencap.org/ into town to shop or have lunch. buddys-music-group.php Tel: 01483 230930 Carousel (Brighton) runs inclusive Email: chichester@disability- creative arts projects and groups challengers.org for young people and adults with https://disability-challengers.org or without learning disabilities. Includes film, dance, music, and Chanctonbury Community club nights. Runs the Blue Camel Play Scheme (Worthing and Club and Oska Bright Film Festival. Storrington) (SB) provides four weeks of volunteer-led respite Tel: 01273 234734 care during the summer holidays Email: [email protected] for children aged four to 19 with www.carousel.org.uk special needs. More information can be found on their Facebook page. CEA card is a scheme that allows a disabled person over eight years of Tel: 07455 131462 age to take a carer free of charge Email: [email protected] to films at participating cinemas. www.facebook.com/ There is a small charge for the ccpsplayscheme card, which is valid for 12 months. Charlotte’s Tandems loans Tel: 01244 526016 tandems, tag-alongs and other Email: [email protected] equipment free of charge www.ceacard.co.uk exclusively to people with disabilities or additional needs Challengers Chichester who are unable to ride a bike Youthscheme (SB) is a club for safely on their own. disabled teenagers aged 13 to 18 years that meets at Westgate www.charlottestandems.co.uk Leisure Centre. Young people can www.facebook.com/groups/ take part in activities such as CharlottesTandems
- 74 - Social life
Chestnut Tree House (SB) and adults with disabilities, which provides care for children and meets on Friday evenings in young people aged 0 to 19 who Chichester and on Wednesday have progressive, life-shortening evenings in Horsham. conditions. It provides specialist short breaks and also runs a youth Tel: 01243 784437 group and a buddy scheme. Email: [email protected] www.cft.org.uk Tel: 01903 871800 Email: [email protected] Chichester Golf Club has a www.chestnut-tree-house.org.uk wheelchair-accessible adventure golf course. Chichester Bowmen offers inclusive archery, with a one-off Tel: 01243 533833 taster session for people to have a www.chichestergolf.com go, as well as longer archery courses. Cineworld Cinemas hold autism- friendly screenings at Brighton, Email: coaches@ Chichester and Crawley in chichester-bowmen.co.uk association with Dimensions. www.chichester-bowmen.co.uk Tel: 0300 303 9062 Chichester Fencing Club is held www.dimensions-uk.org weekly at Chichester High School for Girls. The club also holds Cobnor Activities Centre Trust sessions at Arun Leisure Centre. (Chichester) water activities such as sailability and a chairboat, Tel: 01243 822753, email: info@ plus off-water activities such as chichester-fencing-club.org.uk angling and archery. Also holds www.chichester-fencing-club.org.uk a week-long summer camp for people with disabilities, aged 14 Chichester Festival Theatre to 45 years, which is wheelchair has a youth group, Chichester accessible (no hoist). Festival Youth Theatre (CFYT), held specifically for young people Tel: 01243 572791
- 75 - Email: [email protected] Crossroads Care South Central www.cobnor.com/accessible- (SB) provides short breaks to activities/activities-disabled children and young people aged 0 to 18 years. Workers meet with Compass Card is a discount the family and together decide card for 0 to 25-year-olds with how the young person can be SEND in West Sussex. The card best supported for up to four can be used at lots of leisure hours a week to participate in venues to get discounts or special leisure and social activities. offers. Please check website for eligibility criteria. A Compass app Tel: 01903 790270, email can be downloaded for iPhone or [email protected] Android phones. www.crossroadscare-sc.org
Tel: 0300 123 9186, email: Curiosity Hub runs regular [email protected] inclusive tech events for children, www.compasscard.org.uk young people and adults in Brighton. Crawley BMX Track is an inclusive track run by Wheels for Wellbeing, that has specially adapted bikes Email: and part-time instructors. [email protected] www.thecuriosityhub.com Tel: 01293 585350 Email: WheelsForWellbeing@ Digital/Video Production course crawley.gov.uk (Horsham) is inclusive and runs www.crawley.gov.uk/bmx termly on Saturdays for young people aged 14 to 19 (age guide) Crawley Town Flyers is a football and their siblings and friends. club for young people with special needs or disabilities aged 10 and Tel: 07747 565315 (Kim Roberts) over. Meets on Tuesday evenings Email: at K2, Crawley. [email protected] www.hdsd.org.uk/Inclusive- Tel: 07877 327567 (Mo Hussain) Activities/disabilities
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DJ’ing workshops, for young Drusillas Zoo Park is an people aged 12+ (age guide) accessible zoo located in with disabilities and their Alfriston, near Eastbourne. siblings/friends. Learn new mic techniques and put together a Tel: 01323 874100 set to play at a Blue Oasis Club Email: [email protected] Night at these fully inclusive and www.drusillas.co.uk accessible workshops. Duke of Edinburgh Award offers Tel: 07747 565315 (Kim Roberts) young people aged 14 to 25 Email: the opportunity to help others, [email protected] acquire new skills, experience www.hdsd.org.uk/Inclusive- adventure and make new friends, Activities/disabilities while at the same time working towards a nationally recognised Dome Cinema (Worthing) holds award. regular autism-friendly screenings, plus ‘disability-friendly’ screenings Email: [email protected] for teenagers and adults with www.dofe.org other special needs. Duke of York’s Cinema (Brighton) Tel: 01903 823112 holds autism-friendly screenings. Email: [email protected] www.domecinema.co.uk Box Office: 0871 902 5728 Email: Downsman Bowls Club and [email protected] Crawley Blind and Disabled www.picturehouses.com/cinema/ Bowlers is for people of all ages Duke_Of_Yorks and abilities. Extratime (Shoreham) (SB) is a Email: holiday scheme for children and [email protected] young people aged 5 to 18 with https://downsman.secure-club.com and without disabilities. Provides
- 77 - a variety of activities, games, and weekly SEND sessions. Portable trips out. hoist available.
Tel: 01273 420580 Tel: 01243 256590 www.extratimebrighton.org.uk/ Email: [email protected] west-sussex-summer-2018- www.flipout.co.uk/locations/ holiday-scheme chichester
Ferring Country Centre (Worthing) Footloose Dance Group is a provides training and work dance and movement class in experience for people with learning Crawley for children and young disabilities. Garden centre, horse adults with learning disabilities. riding unit and café. Riding Classes run weekly in term time. therapy for children and adults with a wide range of disabilities. Tel: 01293 585350 Email: [email protected] Tel: 01903 245078, email: www.crawley.gov.uk/pw/Leisure_ [email protected] and_Culture/Sport__Activity_ www.ferringcountrycentre.org and_Wellbeing/Disability_Sport/
Flamingoes Club (Crawley) is a Forest Flyers Disability FC swimming club for over 18s with (Horsham) holds football physical or learning disabilities. coaching sessions for young Meets on Tuesday evenings at K2, people aged 10 and over with Crawley. disabilities every Saturday at Forest School, Horsham. Tel: 07880 178706 Email: [email protected] Tel: 07747 565315, email: www.crawley.gov.uk/ [email protected] disabilitysport www.hdsd.org.uk/Inclusive- Activities/disabilities/disability- Flip Out (Chichester) offers provision-in-local-sports-clubs/ trampolining and rebound club-focus-forest-flyers-fc therapy for all ages. Dedicated
- 78 - Social life
Fun and Breaks has volunteers www.girlguidingsussexwest.org.uk who support disabled children www.girlguiding.org.uk/ and young people up to the age of information-for-parents/support- 18 with accessing social activities for-additional-needs/ for two hours per week or four hours per fortnight. Requests for Golden Lion Children’s Trust a referral should be made through organises days out for children and the Multi-Agency Safeguarding young people with special needs. Hub (MASH) – see Essential Directory for contact details. Tel: 01273 891963 Email: [email protected] Gateway Clubs social clubs www.glct.org.uk for adults and older teens with disabilities. Grav Ity HQ is a Friday night pan- disability social and activities club Bognor: 07967 107783 in Crawley for adults and young Burgess Hill: 07592 609785 people from the age of 16. Search Crawley: 01293 516703 on Facebook for Grav Ity HQ. East Grinstead: 07592 609785 Horsham: 01273 492465 Tel: 07877 327567 Lancing: 01903 764647 Email: [email protected]
Girlguiding – the Senior Section Gully’s Days Out is a scheme is the Girlguiding group for young run by Albion in the Community, women aged 14 to 25. Fully which allows members to request inclusive and provides specialist tickets to a host of different funding and support to those attractions including: SEA LIFE with additional needs. Groups Brighton, Butlin’s, Cineworld and exist throughout the county, as Hollywood Bowl. detailed on the web pages below. Tel: 01273 668590 Tel: 0207 834 6242 Email: gullysdayout@ www.girlguidingsussexcentral. albioninthecommunity.org.uk btck.co.uk www.albioninthecommunity.org.uk
- 79 - Hack Horsham runs regular Impulse Leisure (SB) (Southwick) inclusive STEAM (Science, runs weekly rebound therapy for Technology, Engineering, Arts, children and young people aged Maths) workshops and events three to 18 with additional needs where people of any age can work and disabilities, weekly inclusive on everything from Minecraft family fitness classes (11+), and to coding and simple circuits to a monthly family roller disco (for robot building. 18 year olds and under and their families). www.facebook.com/hackhorsham Tel: 01273 238111 Head2Head Theatre (SB) is a Email: https://impulseleisure.co.uk/ provider of half-day activities centres/southwick/short-breaks for the whole family during the school holidays, which feature Kangaroos (SB) runs the an interactive, multi-sensory following clubs for teens and ‘walkabout’ performance. young adults with SEND: Tel: 01372 278021, email: BreakAway Saturday and holiday [email protected] club for ages 12 to 18 years; No www.head2headtheatre.co.uk/ Limits social programme for family-holiday-activities young people aged 18+; Youth Club for ages 18+ (alternate Horsham Wheels for All provides Tuesday evenings, Haywards a range of adapted bikes for Heath); Social Club for ages 25+ people of all ages and abilities (alternate Tuesday evenings, to enjoy cycling on the athletics Haywards Heath) and TeenScene track at The Bridge Leisure Centre Youth Club for ages 13 to 18 (was Broadbridge Heath Leisure (Tuesday evenings, Burgess Hill). Centre). Meets on Friday evenings. Tel: 01444 459108 Tel: Paul Taylor on 07764 146339 Email: [email protected] Email: www.kangaroos.org.uk [email protected] http://cycling.org.uk/wheels-for-all
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KIDS (SB) offers Short Breaks to Mid Sussex Marlins Swimming children and young people aged six Club (Burgess Hill and Haywards to 18. Workers take small groups Heath) runs swimming clubs of young people on fun trips out. for children and adults with disabilities: Starfish at Dolphin Tel: 01329 312312, email: Leisure Centre, Haywards Heath, [email protected] and Dolphins at the Triangle www.kids.org.uk/chichester- Leisure Centre, Burgess Hill. short-breaks General enquiries: Lodge Hill (Pulborough) (SB) [email protected] accessible lodges and an activity Dolphins, email Pauline at: centre that includes facilities for [email protected] disabled people. See the Facebook Starfish, email Carolyn at: page below for details of their regular [email protected] activity days for young people aged www.midsussexmarlins.org/ up to 18 years with SEND. disabilities Tel: 01798 831411 Email: [email protected] Moving Barriers Club (Crawley) www.lodgehill.org.uk runs sports and activities for www.facebook.com/lodgehillcentre children and young people aged six to 25 with disabilities. Mastersport Inclusive Sport It meets every Friday at K2 provides sport and physical Crawley. Call the Crawley activities for young people Wellbeing team on the number and adults with disabilities. below to find out more. Opportunities are available in most sports, including angling, Tel: 01293 585350, email: football, basketball, and boccia. sportsdevelopment@ crawley.gov.uk Tel: 01424 846951 / 07493 611 384 www.crawley.gov.uk/ Email: disabilitysport [email protected] www.mastersport.org.uk
- 81 - Music and Karaoke Club www.autism.org.uk/services/ (Horsham) for children and england/west%20sussex.aspx young people with disabilities and siblings/friends. Lessons Oak Grove College/Worthing on guitar, drums and vocals Leisure Centre offers holiday in a wheelchair accessible and after-school clubs for young professional recording studio. people with special needs. A range of activities are available Tel: 07747 565315, email: including swimming, tennis, and [email protected] trampolining. www.hdsd.org.uk/Inclusive- Activities/disabilities Tel: 07762 013949, email: [email protected] MXT Swimming School www.oakgrovecollege.org.uk/ (Storrington and Steyning) has our-college-2/subjects/extended- swimming teachers experienced college-activities/ in working with children with autism, muscular dystrophy, Orchard Connect (Orchard ADHD, dysphasia, dyspraxia and House, Cuckfield) holds a youth cerebral palsy. club on Thursday evenings at Tel: 01903 202700 / 07903 731370 The Park Centre, Burgess Hill. Email: [email protected] The West Sussex Disabled Young www.mxtswimschool.com People’s Forum meets every four weeks on a Saturday at the Park National Autistic Society Centre. Also runs a club every Horsham Club (SB) is for autistic Monday during school holidays children and young people aged only. These groups are for between five and 18. It offers a young people aged 11 to 18 with variety of fun activities in a safe, SEND. Please email first if you autism-friendly environment. are interested in attending, as booking is essential. Tel: 01483 521743 or 01483 521744 Email: Tel: 01444 454226, email: [email protected] [email protected]
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Out of Hours is a monthly PACSO (Parents and Carers social club for young adults with Support Organisation) (SB) runs Asperger’s Syndrome. Meets at a number of after-school clubs, Buddy’s Café in Worthing. youth clubs, weekend activities, and holiday playschemes for Tel: 07503 177100 children and young people with www.worthingmencap.org/ special needs aged between five clubs.php and 25 years.
Outreach 3way runs several Tel: 01243 533353 projects for young people with Email: [email protected] learning disabilities and autism, www.pacso.org.uk with a focus on promoting independence and building Pavilions in the Park (Horsham) confidence and self-esteem.Out (SB) runs swimming lessons for There! provides sports and leisure children and young people aged activities for people aged 16+. between five and 19 years. Daytime clubs run in Crawley, Burgess Hill, and Bognor Regis. Tel: 01403 219200 Daytime and evening clubs www.placesforpeopleleisure.org/ run in Horsham, Worthing and centres/the-pavilions-in-the-park Chichester. They also have a Day Centre in Ifield, Crawley, which People Come First is a monthly runs groups and workshops and Horsham group for adults with the S.M.I.L.E service, for people learning disabilities, run by adults with profound learning disabilities with learning disabilities. to learn new skills. Tel: 07920 234605 Tel: 0300 303 9032 Email: Elizabeth.holmes@ Email: [email protected] impact-initiatives.org.uk www.dimensions-uk.org/service/ www. south/outreach-3-way westsussexconnecttosupport.org
- 83 - The Point is a resource unit badminton; new age kurling; for people aged 18 to 50 with boccia; and swimming. physical or visual disabilities. It is run by Scope West Sussex in Tel: 01403 215637, email: Chichester and offers a variety of [email protected] activities and trips. www.hdsd.org.uk/Inclusive- Activities/disabilities Tel: 01243 775330, email: [email protected] Reaching Higher Project (SB) www.scope-west-sussex.org.uk run by Horsham District Council holds term time after-school and Rainbow Trust Children’s Charity weekend sports and arts activities (SB) supports families who have for children and young people a child or young person aged 0 with additional needs and their to 18 with a life-threatening or friends and siblings. Activities life-shortening condition. Support include: archery; athletics; cricket; dance; rebound therapy can be provided at home or in the and video production. community and can include short breaks and family activity days. Tel: 07747 565315, email: [email protected] Tel: 01372 220 111 www.hdsd.org.uk/Inclusive- Email: christina.cahill@ Activities/disabilities rainbowtrust.org.uk http://rainbowtrust.org.uk Regis Gymnastics (Bognor Regis) is a gymnastics club that offers Ready and Able Sports Club dedicated sessions of rebound (Horsham) is an inclusive sports therapy to children and adults and social club for people aged with disabilities. 14+ that meets on Monday evenings (excluding bank holidays) Tel: 07799 836341, email: at Bluecoat Sports Centre, Christ’s [email protected] Hospital, Horsham. Activities www.regisgymnastics.com/ include: football; table tennis; Classes/disability.html
- 84 - Social life
Riding for the Disabled Explorers is for 14 to 18 year olds, Association (RDA) offers lessons at while the Network section is for various centres around the county. 18 to 25 year olds.
Tel: 01403 823212 (Annie Irving) Tel: 01798 831110 Email: [email protected] Email: countyoffice@ www.rda-southeastregion.org.uk/ westsussexscouts.org.uk how-we-can-help-you/find-a-group http://westsussexscouts.org.uk
Rhythmix Music Workshops are Short Breaks for Disabled available to children and young Children commissions holiday people with disabilities, special clubs, after school clubs, buddy needs or mental health conditions. schemes, family fun days, and short breaks at home or in the community. Tel: 08701 417484, email: [email protected] Tel: 0330 222 2562, email: www.rhythmixmusic.org.uk SENDCommissioningteam@ westsussex.gov.uk SASBAH (Sussex Association for www.facebook.com/ Spina Bifida and Hydrocephalus) groups/407136026068540/ runs social activities, a youth club, residential breaks and local SPACE for Girls is a club run by community groups. Aspens (formerly Autism Sussex) for young females aged 11 to Tel: 01903 230782 / 01825 873045 18 with social communication Email: [email protected] difficulties. Clubs run in East www.sasbah.org.uk Grinstead and Worthing on Wednesday evenings. (Worthing, The Scout Association is an term-time only.) inclusive organisation where children and young people can Tel: 01243 214120, email: experience the outdoors, interact [email protected] with others, and gain confidence. www.aspens.org.uk
- 85 - Sport Without Boundaries is Tel: 01903 879666, email: a charity that helps develop [email protected] sporting opportunities for www.placesforpeopleleisure.org/ children and young people with centres/steyning-leisure-centre disabilities. The sports involved range from boccia, new age Sunbeam Swimming Club kurling and tri-golf to swimming, (Horsham) is for disabled people athletics, cricket, tennis and of all ages that runs weekly on football. Please contact the team Fridays at the Pavilions in the Park. on the details below to arrange Prior to attending for the first time, your first visit. please email Sarah Burling (coach).
Tel: 01903 890314, email: sandy@ Tel: 01403 253200, email: sportwithoutboundaries.co.uk [email protected] http://sportwithoutboundaries.co.uk www.facebook.com/SunbeamSC Sussex Cricket in the Community Springboard Project (SB) has disability hubs offering cricket (Horsham and Crawley) provides and multi sports sessions. a range of evening and holiday activities for young people Tel: 0844 264 0202. email: aged 12 to 18 years. It also runs [email protected] monthly social evenings for 18 to www.sussexcricket.co.uk/ 25 year olds and a siblings club for disability-cricket-0 children over 8 years. Sussex Otters Swimming Club Crawley – tel:01293 531963, email (Chichester) is a swimming club for [email protected] children and adults with disabilities. Horsham – tel: 01403 218888, email: Poolside hoist available. [email protected] http://springboardproject.com Tel: 01243 539181 (Hugh Fancourt) or 01243 582545 (Myrna Eccles) Steyning Leisure Centre (SB) Email: provides swimming lessons for [email protected] disabled people of all ages. www.sussexotters.org.uk
- 86 - Social life
Sussex Phab (Lancing, Tel: 01273 701235 Chichester, and Goring) runs clubs Email: [email protected] and outings to encourage people www.sussexwasps.weebly.com of all ages with and without disabilities to socialise together. Tadpoles Swimming Club (East Grinstead) is for people of all Tel: 020 8667 9443 ages with various disabilities and Email: [email protected] diagnoses who would benefit from www.phab.org.uk/phab-clubs- swimming and water therapy. our-phab-clubs Tel: 01892 770232, email: Sussex Sailability based at [email protected] Sussex Yacht Club, Shoreham, http://tadpoles.info caters for people with physical, learning and sensory disabilities. Time Aside runs sensory art Facilities include a hoist to lift workshops at play schemes, people from wheelchairs to boats. parties, family fun days, and other events. Tel: 01798 812265, email: [email protected] Tel: 07792 903236 (Sueloo) www.sussexsailability.org Email: [email protected] www.timeaside.com Sussex Sonics Wheelchair Basketball Club (Brighton) is a Tornados Wheelchair Basketball wheelchair basketball club for Club (Littlehampton) meets every people with disabilities. Friday. For anyone aged 12 and over. Tel: 01273 307505 / 07767 754630 Email: Sussex Wasps (Brighton) is a [email protected] sports and social club for people www.tornadoswheelchairbasketball. with disabilities of all ages. co.uk
- 87 - Tuesday Group is a Christian wheelchair users and people with group for adults who have disabilities. They offer coaching learning difficulties, social/and sessions, group rides and can be communication difficulties or booked for group events. other additional needs. Meets monthly in Chichester. Tel: 01293 585350 Email: WheelsForWellbeing@ Tel: 01243 778500, email: crawley.gov.uk [email protected] www.crawley.gov.uk/wfw https://gracechurchtogether.org.uk/ graceworks/tuesday-group Whizz-Kidz Club (Crawley) enables wheelchair users aged Westgate Leisure Centre 8 to 25 to make friends and (Chichester) runs a club for people have fun. Activities include with disabilities and their families music, dance, art, sports, beauty and carers (see Branching Out therapy, and cooking trips. page 73). The centre has a large disabled changing area with fully Tel: 07833 772949 working electric hoist and an Email: [email protected] electric changing bed. www.whizz-kidz.org.uk/ get-our-help/young-people/ Tel: 01243 785651 ambassador-clubs
Wheels for Wellbeing (Crawley) Woodland Wonders Forest makes cycling accessible to School (Chichester and Horsham) all. It has a range of inclusive offers a range of woodland cycles that will make cycling a experiences and bushcraft fun, healthy option for people activities to the whole family. who might find regular bikes Provides sessions for young unsuitable. Wheels for Wellbeing people with SEND and their sessions are run on a specialist, families, plus six-week courses for traffic-free, cycle track with adults with learning difficulties. access to adapted cycles for
- 88 - Social life
Tel: 07786 368800, email: Let’s get sporty and creative: woodlandwondersforestschool@ andy.caiels@ gmail.com southdownsleisure.co.uk www.woodlandwondersforest www.southdownsleisure.co.uk school.co.uk Worthing Mencap runs a day Worthing Harriers (Worthing centre, sports club and other clubs Leisure Centre) has a wheelchair and activities for people with racing for all ages, as well as a learning disabilities and/or autism. Special Olympics athletics team for those aged 8+. Tel: 01903 202030, email: [email protected] Email: www.worthingmencap.org [email protected] www.worthingharriers.com Yip4Youth (SB) (Crawley) is a daytime holiday youth club for Worthing Leisure Centre (SB) young people aged 12 to 18 with runs a variety of sports and any SEND. It runs on weekdays activities for young people and during the Easter and summer adults with disabilities, including holidays. Yip4Youth Buddies (SB) trampolining for children and young people aged up to 19 every (Crawley and Horsham) is a youth Saturday afternoon; an inclusive club promoting life skills and football session for people aged independence for young people 18 to 36 on Friday evenings. It aged 12 to 18 with moderate also runs a holiday programme, learning difficulties. Meets Let’s Get Sporty & Creative for Tuesday and Thursday evenings children aged 7 to 15, which must during term time. Both clubs are be booked in advance. run by YMCA East Surrey.
Tel: 01903 905050 (option 2) Tel: 01737 222859 Email: enquiries@ Email: Robert.Felgate@ southdownsleisure.co.uk ymcaeastsurrey.org.uk Football: www.ymcaeastsurrey.org.uk/ [email protected] yip4youth-crawley-horsham
- 89 - Buddy schemes Stay Up Late is a charity providing support to people with A number of organisations learning disabilities and/or autism now run buddy schemes, which aged 18+. Matches people with enable disabled children and volunteer buddies to accompany young people to access projects them to gigs and other events via and services in their community a scheme called Gig Buddies. via the help and support of a volunteer buddy. Like after- Tel: 01273 600438 school clubs, these types of Email: [email protected] schemes also enable parents and www.stayuplate.org carers to take a break. www.gigbuddies.org.uk
Aspens (formerly Autism Sussex) Help with the cost of – runs outreach schemes, day activities services and activities for young people and adults with SEND. See The Compass Card is available to page 72 for contact details. children and young people who are registered on Compass West Gig Buddies – see Stay Up Late Sussex or Compass Brighton and Hove, the children and young Grace Eyre runs a friendship people’s disability registers for scheme for young people with West Sussex and Brighton and learning disabilities. It offers Hove respectively. All Compass people the chance to come data is processed and stored together and plan what they securely by Amaze under data would like to do with the support protection legislation and of a coordinator. families are asked to re-submit their child or young person’s Tel: 07436 093120, email: information every two years [email protected] to ensure that the Compass www.grace-eyre.org registers are up to date.
- 90 - Social life
In return, families receive savings Who else can offer support? on leisure activities, including free swimming, cinema discounts, The role of parent and friend free gym memberships. Users can are very different and it is also download the free Compass important to find ways of helping Card app for iPhone and Android your young person to develop to check Compass Card offers friendships outside the family. on the move. Please see www. This might mean having a carer compasscard.org.uk for more or assistant who is a bit closer in information about who is eligible age to them, who can take them for registration and how to apply. out and about or to activities. If your child has a social worker, you Horsham’s Leisure Access Card could talk to them about getting (LAC) allows residents to save direct payments to pay for a up to 50 per cent on leisure personal assistant. activities and attractions across the Horsham District. To qualify If you have had no involvement you must live in Horsham District with social care so far, your child and receive a benefit such as will need an assessment of their needs to see if they are eligible for Carer’s Allowance or Universal support from social care. See the Credit. If you are aged over 16 ‘Social care’ chapter from page 131 and a full-time student, you onwards for more information. are also eligible, so your young person may be able to apply for If you do get Direct Payments, one themselves. The card can Independent Lives can support be used at leisure centres and you. It has a directory of personal visitor attractions in the district. assistants (PAs) looking for work, For more information telephone as well as a page for employers 01403 215642, or email seeking PAs. They can also help [email protected]. with managing Direct Payments. Visit www.independentlives.org or find out more in the Social care chapter.
- 91 - ‘We use Direct Payments to pay for support for Rachel. Her PAs are her friends, because she has no one. She has no friends. She can’t sustain a friendship. That’s part of her difficulty. But I see these two carers as her friends.’
Not all young people find it easy to socialise. Some may prefer to socialise online – but you’ll need to check this is safe. A number of organisations such as have information and guides to help families with internet safety. For further information about internet safety go to page 101.
- 92 - 5 Growing up and relationships
Part of growing up is about • Remind them of all the things developing good self-esteem, they are good at and, if things a positive body image, and the do go wrong, reassure them confidence to be happy with who that everyone makes mistakes you are as a person, as well as occasionally. developing a sense of responsibility • Feeling that their opinions for your own actions. are valuable and respected will help your young person Building self-esteem to be able to speak up, which will help when they have Building self-esteem so that your meetings with professionals. • Encourage your young person young person feels happy and to make their own decisions. confident is extremely important You can help them to do so for all children, and especially so (see page 32 for more on this), for those with SEND. You can help but remember to respect their them in the following ways: choices if they are not what you were hoping they would • Celebrate their successes, decide on! no matter how small. Make • Encourage your young sure your young person person to be assertive with knows how proud you are of others. Teach them how to everything they do. deal with people who ask • Make sure you compliment them questions about their them every day – this could be disability that they may not something as simple as telling want to answer. For example, them they’ve made a good tell them that it is okay to choice. change the subject if they do not feel comfortable.
- 93 - • Remind your child of the fact Puberty and sex education that everyone is different and that this is OK. It can be really What does my child need to helpful to find positive role know? models for your child to relate to. Look out for news articles Growing up is also about having and photos that you can share relationships and becoming a with them. confident adult who may have • Encourage your child to keep a range of close friendships and clean, use deodorant, wash sexual partners. their hair regularly and so on. • Like many teens, your Some parents may find talking to young person may want to their children about puberty and experiment with clothes, sex slightly awkward. However, hairstyles and make up. Help for all children and young people, them to try out different looks, regardless of whether or not they even if it’s not something you have a disability or special needs, would wear, and encourage them to find their own style. being open and honest from an • If your child is self-conscious early age is important. Puberty about certain aspects of their and the swirl of confusing appearance, don’t dismiss adolescent emotions that go their concerns. Listen to them with it is far easier to cope with and support them by helping if a young person knows what is them to talk through their happening to their body and what feelings. It’s important to changes to expect. tell them that everyone has things they do and don’t like It’s a good idea to start talking about themselves. If you can to your child about how their get them to talk about their body works and grows from an good points to focus on some early age and to gradually build positive aspects this can help on their knowledge as they get them to feel more confident older. If they ask questions, be about their appearance. honest with them and factual, but
- 94 - Growing up & relationships don’t feel like you need to go into This is especially important too much detail in one go, which if your child is going to be in can be overwhelming. Building hospital on their own. They may a child’s knowledge slowly and be embarrassed if they can’t at their own pace will be far less explain a problem to a doctor or scary than having to sit down and nurse because they don’t know have the ‘big talk’ about sex. the correct words. If your child needs personal or intimate care, You may also find it helpful to consistency in the language used contact the FPA (formerly the to describe the genitals and other Family Planning Association), areas of the body is also very which produces a range of leaflets important. and a DVD to help parents overcome difficulties talking If your child relies on the help of about puberty and sexual issues support workers when going to the toilet, or if they are used to with their children. The site undressing regularly for doctors also has advice and easy-read or therapists, the concept of parts resources for young people with of the body being ‘private’ may learning disabilities. For more also need reinforcing. information go to: www.fpa.org.uk. Puberty What words should you use? Young people with special needs Use words your child is familiar go through puberty like any other with and gradually introduce the child. Although puberty may correct medical names for the be early for some and delayed genitals and other body parts. for others, it is a biological and Even if your child chooses to use emotional process that has to their own words, it’s helpful if happen. As far as possible, all they can understand and use the children and young people need correct medical terms in certain to be prepared for the changes situations. that will happen to their body before they take place.
- 95 - Every young person is different, with worries relating to their but here are a few ideas that you medical condition or disability. might want to consider talking about: If possible, you need to be able to allay their fears. If you don’t have • The name and function of the the answers, you could contact sex organs. the support group for your child’s • What changes to expect at condition (see the local and puberty. national directories at the back of • How society expects them to the book for further information). behave in public. • Keeping safe from Periods exploitation and abuse. • Relationships and Girls can begin to have periods from responsibility. around the age of nine, although it’s • Preventing unplanned also normal if periods do not start pregnancy and sexually- until a girl is in their teens. transmitted infections (STIs). Make sure that you have covered Schools cover puberty, sex and menstruation well before the first relationships in science lessons period, so that your daughter and also as part of ‘PSHE’ knows it is a normal process and (Personal, Social and Health nothing to be worried about. Education), and you may want to talk to a teacher at school Explain that her period will stop about your child’s sex education after a few days and that it will programme, especially if you feel happen again. Once her periods they might be anxious or if you have started, it’s a good idea to feel they might benefit from a mark it in a diary or on an online chat at home beforehand. app so that she knows roughly when it will happen again. Your child may also need some points to be reinforced at home You should also give her afterwards. They may come home information about pads and
- 96 - Growing up & relationships tampons so she knows what they • Giving your young person a are for and how they are used. say in their personal care plan. It is a good idea to buy some and • Making sure that the care plan take them out of the wrappings. is assessed and updated as Usually pads are quite easy for and when your child’s needs a girl to put in place herself, but change. sometimes she may need help • Finding out if there are ways because of the nature of her that your young person could special needs or disability. manage their intimate care needs themselves, using aids Emphasise the importance of or equipment. personal hygiene and cleanliness • Making sure that the number during menstruation. Make of people who provide sure that your daughter knows intimate care to your young that periods are private and she person is kept to a minimum. should not talk about them with • Asking your young person everyone, but that it is OK to before you provide intimate talk to you, a teacher at school, a care and ensuring that they nurse or a friend if she wants to or know why it is needed. has any questions. • Keeping things consistent – ensure that anyone who Personal care provides intimate care to your young person uses the same Children and young people who language for parts of the body need intimate personal care may and functions. find it awkward or embarrassing as they get older and go through Masturbation puberty. It’s important, therefore, to ensure that you or any carers Exploring your body and getting who provide personal care are to know what feels good is natural as you grow up, but for young respectful and sensitive towards people with disabilities, there may your young person. You can do be issues with opportunities and this by: privacy. As for any adolescent,
- 97 - your young person’s right to they need to form safe, loving privacy should be respected. Try relationships. to knock and wait before going in to a bedroom or bathroom and Many parents worry that teaching ensure that other carers, including their young person about sex support workers, do so too. will encourage them to become sexually active at an earlier age. Some young people with learning However, children who have disabilities may need extra received sound sex education are support to understand that while more likely to wait and become masturbation is okay in private, sexually active later than their there are times and places where peers. it is not acceptable. As mentioned in ‘Useful resources’ on page 100, Avoiding talking about sex there are a number of leaflets will not make your child’s and books available, including sexual development, feelings some easy to read books that and desires go away, but it will help you discuss things with may leave him or her feeling your young person in a way that is confused and fearful, especially appropriate for them. if they misunderstand what they’ve learned or hear wrong Sexual relationships information from peers.
In the past, it was commonly This is especially true today, believed that young people with with so many teenagers having disabilities did not have sexual ready access to the internet – feelings or needs and that if their it is far better that your child disabilities were complex that learns about sex in a safe, secure they did not have the capability way by talking to you, than by to have sex. They do, and part someone at school showing them of helping your young person on inappropriate images or videos. their journey to adulthood is to acknowledge this, so that you It is great if your young person can give them the knowledge feels that they can talk about
- 98 - Growing up & relationships their feelings and needs with you. • Answer questions and don’t Not only will this give them the be afraid to say, “I don’t know. support they need to deal with Let’s look it up together.” difficult adolescent feelings, it • Answer the question they’ve will also give them the security asked. If they want to know to discuss any anxieties they may more, tell them, but don’t have about anything that makes overcomplicate the issue them feel uncomfortable. and don’t sit them down for a ‘big talk’ as it can be As a parent, you will play a vital overwhelming to try to absorb role in supporting your young all the information at once. person through adolescence • Talk to your child about so they can become confident, mutual love and respect. knowledgeable adults who can • Make sure they are aware make good, informed choices. of all the different types of Being open and honest when you relationships and the fact that talk about sex is really important, same-sex relationships are as as is ensuring that your young common for disabled people person has access to good sex as non-disabled people. education and health care. • Share your own beliefs and attitudes but be prepared to When and how to talk about listen to your child, too. They sexual relationships may have different views on things. • Talk to your child from an early age, certainly before Protecting your child from puberty. abuse • Chatting casually and openly while you do other things will There are a number of reasons also help children to feel that why disabled children and young sex is normal. You may find people can be more vulnerable to that a TV programme or a abuse. Their learning disabilities book triggers a conversation, may mean that they have less for example. understanding about private
- 99 - parts of the body, particularly if Give your child the confidence, they rely on intimate care or have knowledge and skills to protect frequent medical examinations themselves, without over- where they need to undress. Or protecting them or stopping they may have communication them from experiencing all the difficulties, which affect their good things that life has to offer. ability to speak out about abuse. So the need for sex education and Useful resources an understanding of appropriate touch is essential. There are a number of good resources to help you explain Try to make sure that your child changes during puberty to a child understands the difference with learning disabilities. Talking between wanting to be touched together about growing up: a and kissed and being made to do workbook for parents of children something that makes them feel with learning disabilities by Lorna scared or uncomfortable. Teach Scott and Lesley Kerr-Edwards them that their body belongs to is available from FPA. See their them and that it is not okay for website www.fpa.org.uk. someone to touch them if they do not want them to. Let’s Talk about Sex by Robie Harris and Michael Emberley Be sure that your child knows (Walker Books) covers all aspects that they can talk to you (or of growing up. someone else they trust) about anything, no matter how awful or Contact’s Growing up, sex and embarrassing it feels. If your child relationships booklet also goes uses signs or symbols, be sure to into more detail about puberty, introduce ones that allow them to relationships and other issues communicate with you or others around growing up. It also has a about their body and feelings. variety of useful contacts to other organisations that may be able to However, it is important to help you. keep these risks in perspective.
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There are also a number of books disabilities. Go to: written for children and young www.scope.org.uk/Support/ people with additional needs Families/Parents-and-Carers/ that explain many topics around Landing/Learning-disability/Sex. this subject. Jessica Kingsley Publishers produce numerous BILD (British Institute of Learning titles relating to disabilities Disabilities) has information and and special educational needs, resources for parents and young including a series of easy to people covering everything from read picture books. They cover friendships to relationships and puberty, masturbation and sex, sex. They also have easy read as well as a guide to using public information. For more go to: toilets safely. They also publish www.bild.org.uk. The Growing Up Guide for Boys and The Growing up Guide for If your child is confused about Girls, which are geared to young their sexuality, you can get people on the autistic spectrum, advice and support from the as well as books written by young Switchboard Helpline on: people with autistic spectrum 0300 330 0630 or go to: conditions. For more go to: www.switchboard.lgbt. www.jkp.com. You can also contact Books Beyond Words produces Young Stonewall at: a series of booklets illustrated www.youngstonewall.org.uk. in full colour and with few or no words for people with learning Online safety disabilities to help them to understand relationships and Computers, tablets and smart health issues. Go to: phones are such a central part of www.booksbeyondwords.co.uk. every day life, that it is inevitable that our children will want to go Scope has a number of links to online. It’s a constant source of material for people with learning worry to all parents – how do
- 101 - we balance freedom to use the keep your child/young person internet while still keeping our safe and how to set up parental children safe from its darker side? controls. Go to: www.thinkuknow.co.uk/parents. Fortunately, there are plenty of resources to guide us through the For those of us whose young online maze to ensure that our people have learning disabilities, children and young people can there are a number of sites that explore safely. For general advice offer advice and resources that about online safety, the following are specifically tailored for our sites are useful: young people: for example, the Foundation for People with Family Lives offers advice on Learning Disabilities: keeping teens safe online, with www.learningdisabilities.org.uk/ resources on chat rooms, gaming publications. and sexting: www.familylives.org.uk/ advice/teenagers/online/online- Mencap has created internet safety. safety training for people with learning disabilities. To find out Get Safe Online is a website more about SafeSurfing, go to: with tips and explanations about www.mencap.org.uk/about-us/ everything from social media to our-projects/safesurfing. banking: 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/ preventing-abuse/keeping- children-safe/online-safety.
Thinkuknow has information about online safety and how to
- 102 - 6 Money matters
Most of us are used to claiming This is a starting point for you benefits to help meet some of the to have discussions as a family additional costs of caring for our about what might be appropriate disabled children. for your own particular set of circumstances. We strongly As well as Disability Living recommend that you seek further Allowance (DLA), many of us professional advice to check may have claimed additional that you are claiming all of the benefits like Carers Allowance benefits that you are entitled to and disabled child tax credits. and to ensure that you make the We get used to having this right financial decisions for you money around; it becomes part and your young person. of the family budget. Often, it pays everyday household bills, You can get expert individual especially if parents can’t work or advice from West Sussex’s work part-time. benefits advisor, Robert Hayes, see page 107. Further information This chapter is an overview of the and advice is also available from benefits you and your child might many national organisations, be getting now and what changes including: as your child reaches 16. We also look at other sources of help like • Cerebra: www.cerebra.org.uk/ Motability, Direct Payments and help-and-information/guides- grants. If you need information for-parents/money-matters on funding for students, you’ll • Contact: https://contact.org.uk/ find it in Chapter 3, ‘Further and advice-and-support/benefits- higher education’. financial-help
- 103 - • National Autistic Society: 16s with disabilities continue to www.autism.org.uk/about/ claim Disability Living Allowance benefits-care.aspx. (DLA). • Scope: www.scope.org.uk/ support/disabled-people/ At the time of writing, there is still benefits/check. some way to go until all benefits claimants have been moved on Changes to the benefit to Universal Credit. Although system Universal Credit has been rolled out in West Sussex for most new The benefit system is currently claimants and also for anyone undergoing some big changes, who notifies the Department of with many familiar benefits being Work and Pensions (DWP) of a replaced by Universal Credit (UC). change in their circumstances, This is an integrated means- there are some exceptions. tested benefit for people in or out of work. It is replacing the Currently, families with three following benefits, which are now or more dependent children called ‘legacy benefits’: claiming legacy benefits cannot apply for Universal Credit, even • Child Tax Credits if they report a change in their • Employment and Support circumstances. Disabled adults in Allowance (ESA) receipt of a payment called the • Housing Benefit ‘severe disability premium’ will • Income Support also be excempt from claiming • Job Seeker’s Allowance (JSA) Universal Credit. Seek further • Working Tax Credits advice if this applies to you.
Alongside these changes, Personal The government plans to move Independence Payment (PIP) all claimants on to Universal has replaced Disability Living Credit some time between 2019 Allowance (DLA) for anyone aged and 2023. over 16 with disabilities. Under
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Money matters
Universal Credit allowances elements for a dependent child or young person as part Universal Credit is made up of Universal Credit. of different elements. You can • Additional amounts paid for a claim a standard element as a child or young person through single or joint claimant and other legacy benefits such as elements if you are eligible. Income Support, Jobseeker’s These include a child element Allowance, Housing Benefit. for people with three children or fewer, work allowances, housing What you must do costs, childcare costs and an additional amount if your child or However, to ensure these young person has a disability. payments continue, you must notify the relevant benefits offices What changes at 16? that your child is continuing in education or approved work-based Generally, there is an expectation training after Year 11. that parents are responsible for their child’s ‘keep’ up to the age We have heard from parents in of 20. So, as long as your child West Sussex who did not know this stays in full-time education at and found themselves in a tricky school or college or certain types situation as their Child Tax Credits of approved work-based training, stopped. Because young people under the current system you can must stay in education or training continue to claim the following until they are 18, they thought that benefits for them: their Child Tax Credits/additional UC allowances for a dependent • Child Benefit, as long as their child would continue automatically, parents’ individual income is but they don’t. not greater than £50,000 a year. • Child Tax Credits (if you do not To ensure that you have continuity yet claim Universal Credit), in your benefit payments, you or you can claim additional must let your benefits office know
- 105 - that your young person is staying When should a young person in full-time education and what claim benefits as an adult? course they will be studying, no later than 31st August. You When a young person reaches 16, must do this every summer until they have the right to manage your child finishes their further their own money or ask someone education – usually when they else to do it for them. This means are 19. The Child Benefit Office that young people have the should send you a form to fill out option to claim benefits in their to say that your child is staying own right. This can be the key to in education or training. If you do your young person getting other not return it, your Child Benefit sorts of help. They may be able will also stop. to get benefits like Universal Credit, as well as other sources of This is an example of things that financial help. can catch parent carers unawares, and it also highlights the need If your child can manage their for good planning. At some point own money, it makes sense for in the near future your benefit them to claim PIP for themselves payments may reduce if your at 16. Even if they do, they can young person leaves home to still be considered a child for the live more independently. Start purposes of other Universal Credit thinking about how you will allowances and Child Benefit. For manage without your child’s more PIP, see page 109. contribution. However, if your child claims ‘Half our household income comes Universal Credit in their own from money because of James’ special right, you will lose any benefits needs. He’s already decided he’s you get for them as a dependent, leaving home when he leaves college, even if they remain in full-time so if I don’t start planning for my non-advanced education or future, I might end up destitute!’ approved training. So you will need to weigh up whether it
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Money matters is best for your young person get expert advice before you make to claim in their own right or any decisions. You can contact continue claiming benefits for Robert Hayes, West Sussex County them as part of your family. Council’s benefit advisor, at: [email protected], The decision you make will giving your child’s name and age depend on your circumstances. as well as your contact details and You will need to compare what he will get in touch to arrange you get now, claiming with your an appointment. Alternatively, child as a dependent, against call Robert on: 0330 222 2569, or what they will get if they claim in 07850 240874. their own right. If they do claim their own benefits, how much will You can also ask a number of national organisations for you lose? information and advice. Contact has a free helpline: 0808 808 3555 Reasonably well-off families who and Cerebra produces a Money don’t qualify for the child element Matters guide, which can be of Universal Credit (or Child Tax downloaded free at: https:// Credits under the old system) or www.cerebra.org.uk/help-and- receive just a small amount may information/guides-for-parents/ find that their household is better money-matters. off if their young person claims benefits in their own right. Work Capability Assessments
Those on lower incomes who get If your child wants to claim more Universal Credit may be Universal Credits at 16, they may worse off if their young person have to have a Work Capability claims benefits in their own right, Assessment. This places people as you could see a reduction in in one of the following three your allowances overall. categories:
To get a clear picture of what is • fit for work best for your family, it is sensible to • limited capability for work - you
- 107 - can’t work now, but you can In reality, most disabled young prepare to work in the future, people don’t feel ready to take for example by writing a CV on this responsibility and ask • limited capability for work and their parents to look after their work related activity – you money for them, pay their bills can’t work now and you’re not and give them an allowance. This expected to prepare for work means parents take on the role of in the future. ‘appointee’.
If your young person is severely An appointee acts on a young disabled and it is decided that person’s behalf in all benefits they have limited capability for matters, not just PIP. This includes work they will get the limited telling the Department of Work capability for work and work- and Pensions (DWP) about any related activity component of changes in their circumstances, Universal Credits. banking benefit money for them and using it in their best interests. What if your child can’t manage their own money? Before an appointee is agreed, the DWP will arrange to visit both A young person can claim a disabled young person and the benefits in their own right, even person (often the parent) making if they need someone else to act the application to act on their on their behalf. Awards for DLA behalf. The DWP has to agree are usually reviewed in the five that a young person is not able to months before a child reaches 16. act on their own behalf. PIP can be claimed once a young person is 16. Claiming PIP at 16 is If you haven’t had a letter from often the first time young people the DWP to ask whether you will have to think about their ability be your child’s appointee, call to manage significant amounts of a few months before your child money. turns 16.
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Money matters
Tips for planning ahead how much they will contribute to the household bills and how • Talk to your child about the much they’ll pay towards the pros and cons of managing care you give them, and other their own money and how stuff like running them around much of it they want to in the car. This way any changes practise budgeting with. in either of your financial Agree how it will be split: how circumstances shouldn’t leave much will be pocket money, you out of pocket and the young how much they will contribute person will get a better idea of towards the help you give how much it costs to live and how them and what they will save. far their money goes. • When you arrange the DWP visit, make the representative Personal Independence aware of your child’s Payment (PIP) communication, learning, or mental health problems In our partner title, Making Sense and whether they’re careless of it All, we cover applying for about money or vulnerable to DLA for younger children in financial abuse. detail, but we have also included a brief DLA guide in this chapter ‘I reminded Alex about last month for readers who have a recently when he’d raided his savings and spent diagnosed child in their early £80 in an hour on the pier buying rides teens – see page 122 onwards. and fish and chips for ‘friends’ and how angry he had been that he couldn’t get the trainers he’d been saving for. We all If your child is is almost 16 and agreed it’s best that I manage his DLA you wish to claim for the first time for another few years.’ you will be asked to apply for PIP.
What should your child pay Likewise, if your child has been towards their care? receiving DLA, you will be sent a ‘hybrid’ adult DLA claim pack Once your child starts claiming about seven months before their benefits, it’s a good idea to agree 16th birthday.
- 109 - What is PIP? Claiming PIP under Special Rules means that you don’t have to Personal Independence Payment wait three months and don’t have or PIP is a new benefit for people to fill in the ‘How your disability over the age of 16 who face extra affects you’ form. Instead, if challenges carrying out everyday you call the dedicated team on activities or getting out and the number below, they will ask about. you some questions. You won’t have to attend a face-to-face Like DLA, PIP is not taxed or assessment, either. counted as income for means- tested benefits. It’s not based on If PIP is awarded on these National Insurance contributions grounds, a young person will and can be paid both in and out of automatically be awarded the work. high rate care component. To claim under special rules, call the dedicated team at the DWP on: Special Rules 0800 917 2222. If a person is diagnosed with a Claimants are asked to get a terminal illness and is unlikely to medical report to send in for their live more than six months, they claim. Ask your child’s consultant can claim PIP under Special Rules. for a DS1500 medical report. If you’d rather not read what Though claiming benefits is likely they write, ask for the DS1500 to be the last thing on your mind to be handed to you in a sealed if you’ve just been told your child envelope, or you can ask them to has such a poor prognosis, it is send it directly to the DWP for you. a good idea to try to claim it on their behalf as soon as you feel A passported benefit able; PIP can’t be backdated to before the day you actually Like DLA, PIP is a passport to claim it, even in such distressing disability premiums. If you are circumstances. still claiming legacy benefits, this
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Money matters will be in the form of extra Child Each component of PIP will be Tax Credits . paid at one of two rates known as the standard and enhanced Under the new system, if a rate: the DLA care component young person is included in your currently has three. Realistically, Universal Credit claim, a disabled this means that if you are already child premium will be payable, on getting the lower rate of the care top of any child allowances. component, you are more likely to be at risk of being turned down Under Universal Credit, benefits for PIP. The weekly payment rates are capped at around £20,000 for PIP are the same as the rates a year, but for households who payable for DLA. have a person claiming PIP this cap does not apply. DLA rules allow for some people with certain conditions to If a young person is entitled to automatically qualify for DLA the daily living component of components at specific rates. PIP, then someone else may be Under PIP no-one, (other than able to claim Carer’s Allowance people who are terminally for looking after them. Getting ill) will have any automatic the higher rate of the mobility entitlement. Nearly all awards component will entitle a young will be time-limited, with very few person to access the Motability indefinite awards. It is likely that scheme and a Blue Badge (see most awards will be shorter and Chapter 11 for more on this). reviewed more frequently than awards for DLA. What’s different about PIP? PIP includes a broader range PIP is paid in two parts: a of practical skills than were mobility component based included under DLA. For on a young person’s ability to example handling money, get around, and a daily living understanding how much change component based on their ability to expect and budgeting are new to ‘look after themselves’. key tasks.
- 111 - PIP shines a torch on social involve a face-to-face meeting skills: asking about the person’s with a health professional.This will ability to mix and get on with be covered later in the chapter. others. It’s easier to know where to include how a young person When will a young person need struggles to ‘read’ other people’s to claim PIP? intentions or understand how what they say and do can have If your child is 16 or over and they an impact on how others feel have never claimed DLA, they towards them. will need to claim PIP. If your child is over 16, and you report a There is no page to fill in on change in ‘circumstances’, which night-time needs. Under DLA might affect the rate of their DLA rules, no matter how dependant award, they will be reassessed you are on other people to do under PIP. things for you throughout the day, if you sleep through the If your child is rising 16 or they night, you would only ever be are over 16 and their existing DLA entitled to the middle rate of award is coming to an end, but the care component. And if you you have not been sent a DLA have a severe learning disability renewal form, you’ll get a letter and challenging behaviour, to tell you when and how to apply under DLA you can only ever be for PIP. awarded the higher rate of the mobility component if you are You cannot apply for PIP until your also up at night. young person is 16, so there will be special arrangements allowing PIP uses an entirely new set of current DLA awards to run on criteria, a points-based system, after your child’s birthday, until to decide whether someone a decision is made on their PIP qualifies for the benefit, and if claim. We understand these claims they do at what rate they will be will be looked at by a specialist paid. For most young people the team of decision-makers. new assessment process will also
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Money matters
You can choose to make an Ring the Department of Work application for PIP even if your and Pensions (DWP) on: child has an indefinite award 0800 917 2222. You can call on of DLA. This would make sense behalf of a young person, but where a young person is likely to they should be with you when be awarded a higher rate under you do this. PIP than their current DLA award. For example if they have high It’s worth getting organised support needs throughout the before you ring. You will be asked day but not at night. for basic details like your child’s name, address, date of birth and As appointee, you need to main area of difficulty. You will act promptly as soon as the also need to give your child’s Department for Work and National Insurance number, their Pensions (DWP) writes to you or doctor’s or health worker’s name your child about PIP. If neither and have information to hand of you reply to the invitation to about time your child has spent apply for PIP, their DLA award will abroad, in a residential school, be suspended four weeks later. care home or hospital. The DWP If a claim is made within four will also ask for bank or building weeks after the suspension, the society details. DLA award will be restored until a decision is made on the PIP claim. As long as a young person has If you do nothing during the four had the additional needs for at weeks suspension, your child’s least three months, expects to DLA claim will end permanently have the same needs for at least eight weeks after they wrote to the next nine months and meets you. There will only be limited the residency test, they will be appeal rights against this decision. sent a ‘How your condition affects you’ form. The claim pack is How to start a claim personalised. It comes with notes to help you fill it in. PIP claims begin over the phone.
- 113 - Making a strong claim for PIP • reading and understanding written information PIP uses an entirely new set of • mixing with others criteria, a points-based system, • making decisions about to decide whether someone money qualifies for the benefit, and if • planning and following they do at what rate they will be journeys paid. To make a successful claim • moving around for PIP, a young person needs to score eight points to qualify for The number of points a young the standard rate of component. person scores in the last two 12 points or more qualifies them categories will determine if they for the enhanced rate. get the mobility component, and at which rate. Scores in the This new type of assessment will other categories will determine focus on a young person’s ability whether they get the daily living component. to carry out everyday activities. There are ten daily living activities Each activity has a list of and two mobility activities and a descriptors that carry different set of descriptors for each: what scores. Some activities attract a young person scores against more points: speaking, eating, each activity should reflect the and planning a journey carry difficulty they experience in the more weight than activities like following areas: budgeting, planning a meal and washing. • preparing food • eating and drinking You can only be awarded points • managing treatments for one descriptor in each activity, • washing and bathing so it’s worth giving as clear a picture • managing toilet needs or as you can. To get any points for incontinence an activity, you need to satisfy at • dressing and undressing least one of the descriptors for at • communicating verbally least 50 per cent of days.
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Money matters
The new assessment prompts reports, speech and language you to explain the challenges a assessments and EHC Plans young person faces doing a task are often useful. These may safely, to an acceptable standard, help to persuade a decision- as often as they need to, as well maker. as the individual way they tackle • Make photocopies of a task when they don’t have everything you send (both someone to help and have to ‘get the claim pack and any extra by’. It’s important to focus on evidence) you will need to these prompts. refer to them if you want a decision looked at again, or Tips for claiming PIP when the claim is reviewed. • Keep copies of everything • Do your best to ‘tell it how in a safe place– you may not it is’. Young people are often have any paperwork returned the ones who know how to you before a face-to-face their illness or disability interview. It can also help you affects them, and most will the next time your child’s PIP be invited to a face-to-face is reviewed, as they may have assessment, so think about left school or college, and how you can involve them in evidence of their level of need making the claim. and abilities will be harder to • Gather evidence: advice, come by. assessments and/or reports, • Think about returning your from health, education or social claim by Special Delivery. care practitioners. If your child It protects you from the claim has an EHC Plan, make sure getting lost in the post, or you have a copy. Include as the DWP saying they haven’t much supporting information received it. You get a receipt as you can with the claim. for Special Delivery items • If possible, send extra from the Post Office and evidence to support what the DWP has to sign to say you’re saying. Copies of they’ve received it. things like diaries, medical
- 115 - PIP applications are time- • ‘Prompting’ is ‘reminding, consuming and detailed, so it’s encouraging or explaining to worth getting help to fill them another person’: it doesn’t in. Disability Rights UK has a explicitly require the presence very helpful guide to making a of another person, but must be PIP claim. It includes the scoring essential for the activity to be system for the twelve activities. carried out’. So, for example, You can download it at: the other person might be at www.disabilityrightsuk.org/ the other end of the phone. personal-independence- • ‘Aid or appliance’ is any payment-pip. device that improves, provides or replaces a Unpicking the jargon: what disabled person’s impaired counts as help? physical or mental function; and includes prostheses. • You will be assessed as Examples might be adapted able to carry out an activity cutlery, modified kitchen ‘unaided’ (and that means utensils, a standing frame, score no points for it) if you communication apps, grab can carry it out ‘without the rails. They count even if the use of an aid or appliance; claimant doesn’t use the or supervision, prompting or aid but could be ‘reasonably assistance.’ These terms carry expected’ to use one but very specific meanings within does not for reasons of cost, PIP regulations. availability or cultural reasons. • ‘Assistance’ means physical • ‘Unaided’ also relies on a ‘hands on’ help: it does not disabled person being able include spoken encouragement to carry out the activity or explanation. ‘in a way that is safe and • ‘Supervision’ means the reliable, does not take too ‘continuous presence of long and can be repeated as another person for the needed. If they cannot do so, purpose of ensuring (the another descriptor must be disabled person’s) safety’. chosen and ultimately the
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Money matters
individual may be considered safely, to an acceptable standard, to be unable to complete the repeatedly and in a reasonable activity at all. time. If you can explain how a young person cannot meet Don’t leave it up to an assessor to one or more of these additional have to guess! It’s always worth requirements, it is likely that giving a very detailed account to you can reasonably argue the explain what happens in reality. descriptor that best fits is the one For example, to get the higher that attracts 12 points. rate of the mobility component, and score 12 points on grounds ‘Zoe has cerebral palsy. She can walk of physical impairment alone, 40 metres with a walking frame, but you will need to provide evidence to do this she needs to draw on all her that a young person who ‘can resources. The physical and thinking stand and then move a metre, effort of getting her body to do what cannot move more than 20 she wants is exhausting. Just this short distance takes her at least five metres, either aided or unaided’. minutes. The first 20 metres takes her This seems a really tough test, two minutes but the next 20 metres especially as the distance under takes at least three minutes. Then she DLA to get the higher rate of needs to stop and rest. She needs to the mobility component was 50 be able to sit down and take a break metres. for at least five minutes. On a bad day she would need a longer rest. This The next descriptor, that a young means on a good day it will take Zoe person may be able to walk more 15 minutes to walk 80 metres. Even than 20 metres but no more than on a good day, Zoe would not be able 50 metres, only scores 10 points. to repeat this more than twice, on another day she may only be able to This is not enough to get the repeat this once. On a bad day Zoe higher rate under PIP, or access may not be able to repeat this at all. the Motability scheme or a Blue Any amount of walking has an impact Badge. Remember though, this later in the day. If Zoe has been out descriptor can only be applied in the morning, she will need to sleep if a young person can do this most of the afternoon to recover.’
- 117 - This means that at best, using help our child needs in sufficient her walking frame, Zoe may be detail. The clearer the picture you able to walk 160 metres, but it can give, the less likely it is that a would take her 35 minutes. Then young person will be called for a she would not be able to walk face-to-face assessment. any further for several hours. So on a good day, it would take Zoe If you feel stuck with a PIP claim at least 155 minutes to walk 161 pack, download the Disability metres. It could be argued that Rights UK Guide to claiming PIP Zoe cannot maintain this level at www.disabilityrightsuk.org. of activity ‘repeatedly’ or ‘in a It is comprehensive and has reasonable time’. She certainly useful examples. cannot do it even once without her walking frame. Contact also has a fact sheet on claiming PIP, as well as a guide If a young person has good that can be downloaded as a PDF. and bad days, it’s really helps Go to: https://contact.org.uk and to explain this too. Describing select ‘advice and support’, then exactly what they can do two click on ‘benefits and financial days out of seven and what they help’. can manage on the other five helps the assessor work out which Face-to-face assessments descriptor (and so how many points) best reflects a young It is very unlikely that severely person’s abilities. Points will be disabled young people will be awarded for the descriptor that asked to attend a face-to-face best fits 50 per cent of the time. assessment. Nevertheless, to avoid unnecessary interviews, As with DLA, PIP claims are less be sure to send as much likely to be successful if you supporting evidence, and give don’t use the opportunity to give a detailed account of how they examples. Many of us have found cope with daily activities, their that we’ve had to add additional communication or access needs. sheets of paper to explain the
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Money matters
Most other young people will answering ‘open’ questions. ‘Can be required to attend a face- you tell me how you would make to-face assessment. For most a cup of tea?’, ’How did you get claimants and especially disabled here today?’ but don’t practise young people, this is likely to feel too much. overwhelming. There is a lot you can do to make this a fair and a Assessments may happen at positive experience. your home or at an assessment centre. If you need to travel, plan A young person should always how you will get to the venue. If have someone to support them a young person is very anxious and may need help to think it may even help to practise about who is the best person the journey and check out the to ask. It needs to be someone building a few days before for who is both ‘on their side’ and things such as accessibility. Travel understands how their disability expenses will be reimbursed: impacts on everyday life. This can keep receipts or note mileage if be a friend, support worker, or you come by car. Parking charges health, education or social care are covered, too. practitioner. Most often this is likely to be you, their parent carer. On the day, arrive in good time. It’s really worth preparing for this Make sure you are both as meeting. Start keeping a diary so comfortable and feeling as calm you can illustrate what your child as possible. We understand you can do and the help they need. can make a record of what is said at the meeting but you have to be A young person may not have had able to give a copy to the assessor much involvement in writing their and it makes sense to say well in PIP claim and, even if they have, advance if you’d like to do this. the last time either of you looked at it will have been months The healthcare professional who ago. So read through it again, does the assessment will want to together. Spend a bit of time see for themselves how what is rehearsing: take turns asking and written on the PIP form matches
- 119 - up with the young person they haven’t gone well or routine daily are meeting. activities didn’t get done at all.
If a young person struggles It’s important the assessment to ‘follow’ the thread of a goes at a comfortable pace conversation or is likely to and it’s okay to ask for a break, misunderstand what other if a young person needs one. people say, you will need to act Be aware that the healthcare if you notice this is happening. professional will observe and note Doing this in a clear, positive everything: from whether a young way: repeating and phrasing person lets a door go in your face questions more simply, using as you come into the room, to words they know, checking how they put their coat on. back they really understood the question and everyone else If there is any sort of physical has understood what the young examination, a young person person is trying to explain will should not feel pushed to do help the assessor to understand more than they can safely what the difficulties are. manage or anything that is painful. Agree beforehand how Often a young person will have they will tell you or signal that a very good idea about what is they cannot carry on. difficult for them and how they manage. But even so, some Towards the end of the may say what they think the assessment, the healthcare healthcare professional wants to professional should give a hear. You will be able to add to summary of their findings and and comment on what a young ask if there are any questions or if person says if you feel their own there is anything more you would perception of their abilities is like to add. Later they will write a unrealistic. It helps to give real report and send it to the DWP. examples of occasions when a young person hasn’t had the The decision about whether to help they needed and things award PIP, at what rates and for
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Money matters how long is made by the DWP. claim: this is called ‘requesting a You will be contacted by letter re-consideration’. If you ask, the about the outcome. DWP must do this. Ask for copies of all the information, including What happens if you do not any reports submitted by the agree with a decision? healthcare professional. This can help you build a case. Say that The outcome letter will explain you will write to give detailed what to do next if you do not reasons why you disagree. agree with a PIP decision and about time scales. The first thing Go through the paperwork to do is to contact the DWP, you carefully, note if there is any can do this over the phone. difference of opinion between what you put on the claim pack Say what it is that you do not and the healthcare professional’s agree with and why. It may be report, if any evidence has been that you feel a young person disregarded or if you need to should be entitled to the gather more reports to support enhanced rate for the mobility what you say. Ask for extra time component rather than the if you need it and say when standard rate. Or maybe you you will write back to them. disagree with the length of the Otherwise a decision may be award. Always be aware that made straight away. when you ask for a claim to be looked at again, the DWP can The right to appeal a PIP decision look at both components as well only arises once a different as the length. decision-maker has reviewed all the information and you have the If no award has been made at outcome in writing. Hopefully, all, you should get a phone call the first decision will be revised in from the DWP to explain why. your child’s favour and you won’t You should ask that another need to go to appeal. If it isn’t, all decision maker look again at the is not lost.
- 121 - Whether or not the decision only get a report the day before, is changed, you will get a take it with you and explain about mandatory reconsideration this, as it is usually the case that notice. You will need this to the Tribunal panel will accept appeal. You now have one evidence on the day. calendar month to submit your appeal. Appeals are made directly Hearings are informal and you to an independent tribunal. You will be able to comment on and will need to fill in a SSCS1 notice add to what your child says. It’s of appeal. You can download this always best to prepare again from www.gov.uk website. as you did for the face-to-face assessment with the healthcare Say clearly what part of the professional. decision you disagree with and why. Send it back within the Disability Living Allowance timescale and make sure you (DLA) keep a copy for your records.
You will get a pre-hearing If your child is in their early teens questionnaire. It’s best to opt and they have recently been for a face-to-face hearing – your diagnosed with or acquired chances of a favourable outcome a disability, you may want to are much greater if you do. consider claiming Disability Living Allowance (DLA). This is a benefit You do not need to take someone for children under 16 – if your like a solicitor to represent your child is almost 16, you will be young person. Experience of asked to apply for PIP instead. DLA appeal tribunals tells us that parents and carers are generally A DLA claim can be made if best placed to ‘tell it how it is’ and your child needs help looking say it from the heart. after themselves, or they need watching over to stay safe, or If you have any more supporting if they find it difficult to walk evidence, send it in at least a about or get around because of a week before the hearing. If you disability or chronic illness.
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Money matters
Like PIP, DLA isn’t taxed and What does all the jargon mean? income from DLA is ‘disregarded’. This means it’s not taken into • ‘requires’ does not mean account if you or your child claim medically require, it means other benefits. DLA is a ‘passport’ reasonably require. For to other sorts of financial help example, a young person too. If you claim other benefits with a speech and language because you are on a low income, disorder may have a it’s always worth saying your reasonable requirement child gets DLA: there can be extra for attention from another benefits for parents. person to make themselves understood and make sense It’s best to get the DLA claim of what others are saying. pack from the DWP as they will • ‘attention’ is help from date stamp the form. As long as another person to do the personal things a young you get the completed form back person cannot do for within six weeks, a successful themselves. claim will start from the date you • ‘bodily functions’ are requested the pack. anything to do with how the body works and what it does. Making a successful DLA claim • ‘continual supervision’ means a young person needs someone To make a successful claim for around to minimise the risk DLA you need to show a disabled of them coming to harm, or child ‘requires’ substantially more putting others in danger. ‘attention’ in connection with • a ‘prolonged period’ is at their ‘bodily functions’ than is least 20 minutes. usually required by an adult; or • ‘frequent intervals’ means at ‘continual supervision to avoid least three times a night. substantial danger’ or someone • ‘watch over you’ means ‘to be awake for a prolonged someone is awake and alert period or at frequent intervals’ at and getting up to check on a night to ‘watch over’ them. young person.
- 123 - What counts as ‘bodily help, or prompting and functions’? encouragement with everyday activities like dressing, There’s a very long list of what washing, and toileting, counts as bodily functions: cooking or even getting along breathing; hearing; seeing; with other people. talking; listening; signing; • The thinking you do to reading; eating; drinking; anticipate and manage walking; sitting; maintaining potential difficulties. good posture; sleeping; turning; • The ways you adapt your changing bedclothes in the night; communication: some eliminating waste products; disabled young people need getting in and out of bed, a bath help to make themselves or chair; washing; shampooing understood, make sense of hair; cleaning teeth; brushing hair; what’s going on around them, dressing and undressing; help or to manage difficult feelings with medication or therapies; like anger or anxiety. managing feelings and behaviour; • Nursing or therapeutic help: thinking; problem solving; monitoring a young person’s making choices; being prompted, medical condition, giving reminded or encouraged. medication, helping a young person use special equipment What counts as ‘attention’? or carry out a therapy programme. All sorts of things count as • Help to get out and about and attention (or help), including: to keep safe.
• The resourcefulness, time and Don’t underestimate the help energy you put into helping your child needs. Some young your teenager learn what people need much more help other young people seem to than others. Even if your child pick up effortlessly, including needs extra help with just problem-solving when some of the things we have unexpected things happen. mentioned, we think it’s worth • Practical and hands-on making a claim for DLA.
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Money matters
If your claim is successful, DLA is The mobility component of DLA payable in two parts – ‘care’ and ‘mobility’ components. A young person can claim this if they need extra help with getting The care component of DLA around. There are two rates for this: A child can claim this if they need help with ‘personal care’ or The lower rate: if a young person looking after themselves. This needs someone around to keep includes things like keeping safe them safe, or someone to help and communication, as long as them find their way around. they have needed the extra help for at least three months and will The higher rate: if a young continue to need the help for at person’s ability to get around is least another six months. There severely restricted because they: are three rates at which the care component can be paid. • Cannot walk at all, or are virtually unable to walk. The low rate: if a young person • Have no legs or feet, or needs some help for a significant walking would be dangerous portion of the day and/or they for their health. cannot prepare a cooked main • Have the most severe visual meal for themselves. impairment or are deaf and blind. The middle rate: if a young • Have severe learning person needs frequent help disabilities affecting or constant watching over to both cognitive and social stay safe or keep others safe functioning and/or disruptive during the day. Or some help or behaviour that is unpredictable watching over at night. and regularly requires physical intervention to prevent injury. The high rate: if a young person They also need to be getting needs help day and night. the high rate of the DLA care component.
- 125 - • To get the high rate for Getting help with claiming DLA mobility, young people are likely to have a severe physical The county council runs a benefits or sensory impairment; a advice service for families or life-threatening neurological, carers of young people with cardiac or respiratory disorder; special needs. They can help with or the most severe autism form-filling, reviews, appeals or learning disability and and tribunal representation. All challenging behaviour. If a welfare benefits are covered by young person is awarded the the service, including DLA. For higher rate for mobility: further information, call Robert • The vehicle used by the Hayes on: 0330 222 2569, or disabled child may be exempt 07850 240874, or email: from Road Tax. [email protected]. • A child will be entitled to a Many other disability organisations Blue Badge. This should make offer useful advice about claiming it easier to park close to the DLA for children and young places they need to go. people with specific illnesses or • The child or their appointee disabilities. For example, the may be able to buy or lease National Autistic Society (NAS) a car or purchase an electric has information that will help wheelchair through the you if your young person has an Motability scheme (see page autistic spectrum condition and 210 for more information). Cerebra also produces a guide to claiming DLA. If you don’t agree with any part of the DWP’s decision (a non-award, Carers Allowance (CA) the rate of either the care or mobility component, or the length Carers Allowance (CA) is a weekly of the award), you need to act payment for anyone who spends quickly. There are short timescales at least 35 hours a week looking for challenging decisions, so get after someone with an illness or advice as soon as possible. disability, but isn’t paid to do it.
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Money matters
The person they look after must are on means-tested benefits be getting the middle or higher because although CA is deducted rate of DLA or either rate of the from them, claiming it protects daily living component of PIP. your pension and makes you eligible for a Carer’s Premium, If someone other than you cares so the amount of means-tested for your teenager, they can claim benefits you get will increase. the benefit instead. Even if your child is at school or college, many The process for claiming CA is parents will ‘clock up’ more than simple and quick. Call the Carer’s the required 35 hours a week. Allowance Unit on: 0800 731 0297, Only one person can claim CA (Textphone: 0800 731 0317) for for your child and you can only a claim pack, or claim online at: claim CA once, even if you care www.dwp.gov.uk. for more than one person who’s getting DLA or PIP. Other sources of You can claim CA and earn up financial help to £120 a week after deductions (tax, National Insurance and See Chapter 11 for details on other allowable deductions). This travel and transport schemes and amount is revised every April and concessions, including Motability. is correct for the year 2018/19. For information about Direct Up to half your earnings can be Payments (DP) and funding for disregarded if you pay someone adaptations in the home, see who’s not a ‘close relative’ to look Chapter 10. after your child. You can claim CA even if you are getting PIP or Once your child is 18, you may Attendance Allowance yourself. be able to apply for a Carers’ CA is taxed and counted as Grant from the council. It can income if you claim other means- help if you want to take a break tested benefits. and need a temporary increase in a care package, or a short stay It’s worth claiming CA even if you somewhere else for your son or
- 127 - daughter while you’re away. The charity committed to breaking grant can also help towards the the link between poverty and cost of a holiday, travel costs, days disability. It publishes The out with the person you care for, Disability Rights Handbook: a or for leisure, adult education, comprehensive guide to benefits or support to help you stay in and services for disabled people, employment. You’ll need a carer’s their families, and carers. Be assessment to be eligible, see page warned that it’s not light reading 151. Call the Adults’ CarePoint and is also updated each year, so on 01243 642121 (Text Relay: unless you have a special interest 18001 01243 642121) or email: in benefits, it’s probably best to [email protected] to look for it in the reference section ask for one. at your library.
Some charitable organisations Financial planning, wills make grants for specific purposes and trusts like holidays or buying a special piece of equipment. You’ll find Perhaps one of the hardest parts details in a directory called A of being a parent carer is knowing Guide to Grants for Individuals in that one day you won’t be around Need, which should be available to look after your child. It is in bigger libraries. natural to worry about what will happen to them and how they Further help with disability will cope without you, especially benefits if they have a disability that means they are unlikely to live Organisations such as the independently. Citizen’s Advice Bureau can offer similar benefits and financial One of the most important advice and support to disabled things any parent can do is to adults or their carers. ensure that they have make a will and that they have named Disability Rights UK is a national a guardian, in case anything
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Money matters happens to them before their What can you do? child(ren) reach adulthood. It’s easy to assume that this is In order to ensure that your all that needs to be done, but if disabled child is provided for, you you have a young person with may want to consider setting a disability, it’s not quite as up a trust. This is a formal legal straightforward. agreement that sets out what will happen to your assets (your Even if your child might manage money and property) after you die their own money, there is also and how the money will be used to the need to consider that their benefit the disabled person. disability could leave them open to financial exploitation by A trust has two or more people, others. Leaving your child money called ‘trustees’ who hold the or property could also prevent money on behalf of the disabled them from claiming means- person, who is called the tested benefits. ‘beneficiary’. The trustees are named in your will. Some families think they can cover this by leaving all their When your will is written, you money to the sibling of their also write what is known as a disabled child. They assume ‘letter of wishes’, which explains that an informal agreement in to the trustees how the money which the sibling promises to should be used. For example, you look after the disabled person may want to include the sorts for the rest of their life will be of activities that your disabled enough. But this is a risky idea, young person enjoys and the as, officially, the money would be therapies and services that you the sibling’s. If they die first, get would like them to benefit from, divorced, or simply decide that using the money in the trust. they have changed their mind, your disabled child could be left When it is first set up, you may be without a penny. asked to make a small payment
- 129 - (usually of 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 is added.
You can find out more about wills and trusts through Mencap, who can also signpost you to experienced solicitors locally. Call: 020 7696 6925 or email: [email protected].
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): www.step.org or call: 020 3752 3700.
- 130 - 7 Social Care
When our children are heading are important to give parents the towards adulthood, we need to confidence… To know that you’ve got know that they will be supported the basic right (in law) gives you the to live as independent and confidence to challenge things.’ fulfilling a life as possible and be appropriately cared for. But if There have been significant your child needs a lot of support changes to the law regarding special educational needs and now it can be hard to find the social care provision for children headspace and time to think and young people with SEND. about the future. It is worthwhile Preparing for adulthood is a key if you can, though. element of recent law reforms. ‘You know how it is, you deal with the For young people aged 18 to 25, short-term because the long-term is there are two pieces of legislation just so difficult to imagine.’ that mean they may be entitled to support from adult social care. This chapter explains social care assessments for disabled adults The first is the Children and and how they are carried out. It Families Act 2014, which also covers the range of services introduced Education, Health that may be available and how and Care (EHC) Plans; a single those services are paid for. assessment and planning process for young people with SEND Who gets support from adult which can potentially continue social care? up to age 25 (see Chapter 1 for more on EHC Plans). In addition ‘I think you need some pointers; to this, Part 1 of the Care Act 2014 people will need to know they can ask deals with the care and support of certain things. I think the legal things people over the age of 18.
- 131 - Both the Children and Families Moving to adult social care Act and the Care Act share the following goals and themes: Once your child is 18 years old, the social care support they need • working towards clearly is provided through the council’s defined outcomes Adult Social Care Team. Adult • engagement and participation social care workers carry out of parents and young people needs assessments to decide • joint commissioning and what the young person’s support developing a Local Offer of needs are, whether the young support (see page 4) person is eligible for support and, • coordinated assessments and if they are, what support social Education, Health and Care care can offer you and your young Plans person. In West Sussex enquiries • personalisation and personal are initially directed through budgets. the Adults’ CarePoint on: 01243 642121, or email: Not all young people who [email protected]. received social care support when they were young will qualify for If your child has an EHC Plan adult services, and having an you should begin to discuss your EHC Plan does not necessarily child’s possible future needs for mean that your young person social care support during their will be entitled to social care Year 9 annual review as part of support as an adult. However, it’s the process of transition planning. also important to highlight that It is helpful to invite someone some young people who may from social care to transition not have had support from social planning meetings, as they will care in the past may need social decide whether your child is likely care support in adulthood. This to need or get support from the is why it is important to have an local authority in the future. assessment done. For more on this, see facing page. If your child doesn’t have an EHC
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Social care
Plan but is getting social care be a need for care and support support you should speak to your post-18’. The purpose of the social worker about moving to assessment is to find out what adult social care. adult social care a young person might be eligible for once they ‘Rachel’s transition from Children’s to reach 18, so he or she can make Adult Services has been very smooth. informed choices about the future. I feel that the different agencies … have all communicated well between When does planning start? themselves, so bringing about a positive experience of transition. Under the Care Act 2014, young Throughout the process I always people or their parents can request felt everyone involved worked with a Child’s Needs Assessment (CNA) Rachel’s best interests at heart.’ at any time before their 18th birthday, whether or not they have Working together an EHC Plan. A successful transition to adult The CNA should be carried out care and support involves the at a time when it is of ‘significant young person, their families and benefit’ to the young person’s professionals working together. preparation for adulthood. It The Care Act 2014 means should include an ‘indicative local authorities have a legal personal budget’, so that young responsibility to cooperate, and people are able to plan what their to ensure that everyone works future support might look like. together to get the transition right. You can read more about personal budgets on page 142. Child’s Need’s Assessments If the local authority thinks your Under the Care Act 2014, local child will not need adult care authorities now have a duty social support, or they believe to carry out a Child’s Needs you are asking too early for a Assessment (CNA) for a young Child’s Needs Assessment (CNA) person, where there is ‘likely to to be useful, they can refuse to
- 133 - carry out the assessment. If they What should the Child’s Needs do refuse, they must explain Assessment (CNA) include? why in writing and include information and advice on what The assessment should be can be done to ensure the young person-centred (see page 282) person can avoid the need for and it should give information care and support. about your child’s needs, plans and aspirations for their future. If the local authority does not carry It should have clear short and out an assessment because the medium term outcomes so that timing is not of ‘significant benefit’ it can then be used as the basis they should advise you when for a conversation with: your the CNA should be carried out young person; you; a professional and contact you and your young from adults’ services (who person to arrange the assessment should have good knowledge of support options that will be when that time comes. available to your child); and other professionals involved in the For a young person with an EHC young person’s care and support. Plan, the conversation about whether they need a Child’s Under the Children and Families Needs Assessment should begin Act 2014, EHC plans must clearly in the Year 9 review as part of set out the care and support the preparation for adulthood that is required as a result of planning. the young person’s special educational needs. So if a young If your young person does not person is over 18 and they have a have an EHC Plan, but is still care and support plan, this should supported by children’s social be incorporated into the EHC care, it is a good idea to ask their Plan, where there is one, rather social worker at their next review than developed separately. It will when it will be useful to have the include those elements of their assessment done. care and support which are directly related to their SEND and specify
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Social care other care and support. It should will look at ‘outcomes’. This means clearly highlight which elements they look at the impact of your are not directly related to SEN. young person’s physical or mental impairment on their daily life. Eligibility and the Assessment They will look at strengths and Process capabilities and identify support that may be available in the local Since the Care Act came into community to help your young force, it has changed the way the person be as independent as local authority decides if adults possible. They will ask you about: are eligible for care and support services. All three of the following • managing and maintaining must apply to your young person food and drink for them to be eligible for adult • managing personal care – care or support services: making sure they are clean and dressed appropriately • your young person’s needs are • managing toilet needs due to a physical or mental • getting around the home safely impairment or illness • looking after the home • your young person’s physical • developing and maintaining or mental impairment or personal relationships illness affects their ability to • being able to access and achieve two or more ‘specified take part in work, training, outcomes’ (see below) education or volunteering • your young person’s wellbeing • using services in the local is significantly affected by community, such as public the inability to achieve these transport and leisure facilities outcomes. • carrying out caring responsibilities Achieving ‘specified outcomes’ The local authority may measure When considering whether your young person’s needs someone is eligible for adult care against other ‘outcomes’ too and support services, the assessor – so ask what these might be.
- 135 - They also look at their care and your young person needs and also support needs over the last year anything that you disagree with. to consider whether your young person’s needs may change. It is important to involve the young person as much as possible The local authority must carry during the assessment process. out a needs assessment for They may need specialist support people who appear to be in to help them communicate need of care and support, their thoughts and feelings – for regardless of their financial more on helping your child to status or whether the local communicate effectively, see authority think that their needs Chapter 2. will not be eligible. To arrange a needs assessment if your young What happens after the person is already 18 or, if they assessment? are under 18, a Child’s Needs Assessment (CNA), contact the If your young person is eligible Adults’ CarePoint and request an for services or support, you ‘Assessment of Needs’. should get a written record of the assessment, which may be in the The assessment process form of a ‘support plan’.
During the assessment, a social The plan will outline the young care worker will gather information person’s and carer’s needs and from your young person, their the support that is required, then parent carers and relevant workers social care will work out how from education, health and social much funding is available to help care. Assessments are usually you with this. done in your home and may take more than one visit. If your young person is eligible for support, they will be allocated an The social care worker doing the approximate sum of money called assessment should note down a ‘personal budget’ to cover the what is said during the meeting. cost of their care – read more about This should include the services personal budgets on page 142.
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Social care
If your child isn’t eligible, you • Don’t be afraid to ask should get a written statement questions and explore telling you why. Even when an different options. When you assessment says that someone are speaking to professionals, does not have needs that the make sure you note down local authority should meet, their name, job title and the local authority must advise contact details, in case you people about what needs they need to go back to them. do have and how to meet them, • Don’t be afraid to suggest as well as advising on how to things that haven’t been tried prevent further needs developing. before. If you can explain why your idea may work others Assessment tips may be willing to listen. • Don’t see professionals as the • Don’t assume because your ‘opposition’. Try to explain child has an EHC Plan that yourself clearly, and to see they will be eligible for adult their point of view. If you services. don’t agree, say so politely • Get as much information as and explain why. you can from other people in • Ask what the next steps are similar situations – including information about services, and when they will happen. waiting times for assessments and recent examples of Ensuring there is no gap in provision. services
If you feel that you or your young When the local authority assesses person needs someone to support a child who is receiving support them with the assessment, you under legislation relating to could ask for an independent children’s services, the Care Act advocate to help you. You can find 2014 requires them to continue out more about advocacy options providing him or her with that in West Sussex by going to www. support through the adult westsussexconnecttosupport.org assessment process. This will or contact the Adults’ CarePoint. continue until adult care and
- 137 - support is in place to take over, or The support your young person until it is clear after the assessment receives will depend upon their that adult care and support does individual situation but may not need to be provided. include:
These changes are meant to • equipment to help them stay prevent someone who is already independent receiving support suddenly • technology to keep them safe finding themselves without the in their home care and support they need when • help looking after themselves they reach 18. at home • help with going out Your young person’s • help getting a job or studying • access to supported living or support plan other housing support
After the assessment, if your The care and support could young person is considered come from a variety of places eligible for support, someone from including: family and friends, the adult social care will help you put NHS, West Sussex County Council together a care and support plan. or community and voluntary The support plan will confirm organisations. which of your young person’s needs are to be met and how this How a support plan works will be done. The plan should be reviewed on an annual basis. Your social worker will discuss how your young person’s needs The person from social care will can be met with you and your be responsible for making sure young person (if appropriate). that any agreed services are put They should ask you what you into place. However, be aware want to happen and what is that there can be delays between important to your young person. finalising the plan and putting it into action. This is meant to give you and your child the chance to take control
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Social care in deciding how they will receive been taken into account. Once support, and to have a clear idea a support package has been of when and how this support will agreed, it’s hard to renegotiate be provided. once support has been provided, it can’t be taken away without the The support plan will also look person’s needs being reassessed. at how to improve the young person’s wellbeing and prevent If the support plan isn’t being problems developing in the future. monitored properly, contact the Adults’ CarePoint and request a • You will be given a copy of review date. your young person’s support plan, which will include ‘I was very impressed when I saw details of any decisions taken. Rachel’s support plan, it was accurate You can ask to see personal and thorough. The social worker made information held by Adult great efforts to ensure that I was Social Care about you and completely happy with it.’ your young person. If you feel anything is incorrect you can Keeping the support plan ask staff to change this. up to date • If you, another family member or a friend is providing your Completing the planning process young person with support on a and putting care and support regular basis, the support plan arrangements in place does should also provide details of not mean the end of the local how your young person’s needs authority’s responsibilities. The can be met if you or the other local authority has a legal duty carers are not available. to review the plan to make sure that the person’s needs and Things to remember outcomes continue to be met over time, although the Care Act When you get a copy of your does not specify how often this child’s support plan, double has to happen. But if anything has check that all their needs have changed, a new assessment must
- 139 - be carried out, so it is important ‘We did not want to have to complain, to let the local authority know we are not a complaining family, but about any changes as quickly as we were advised to complain as it was possible. Your young person also the only way they could get funding.’ has a right to request a review of their care and support plan, if What if your young person’s they wish. support plan isn’t working?
What if you don’t agree with From time to time things may go the assessment findings and wrong with your young person’s support plan? care. Your social care worker should have already discussed If you don’t agree with the with you and your young person findings of the assessment, what should happen if a crisis contact the Adults’ CarePoint to occurs and this should be discuss the matter. The support included in their support plan. plan could be changed by agreement. If there is a problem with the way your young person’s care is being You have the right to ask for a provided, you should first speak review of the assessment, and directly to their care provider. If to ask someone to advise you or this doesn’t resolve the problem, act on your behalf. If you or your then call the Adults’ CarePoint. young person needs support to do this they could ask for help ‘When I saw Charlotte’s support plan from one of the advocacy services there was nothing in it about night waking staff even though she has in West Sussex (see pages 30 and epilepsy and could fit at night. 36 for details). I flagged this up with Charlotte’s care home manager. They had to go If you still disagree with the back to the council to give them more assessment, or with how social funding to do this. There was a lot of care intends to meet your child’s resistance to this, because the council needs, you can go through a had already agreed a package that formal complaints procedure. seemed expensive.’
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Social care
Paying for adult social care • your young person can’t and support afford to pay for the full cost of their care The Care Act 2014 gives local • your young person asks the authorities the power to charge council to meet their needs people for social care services. • your young person does not This includes services such as have the mental capacity and residential care homes, short has no-one else to arrange breaks, day services, home care, care for them (for more on community support, and home mental capacity see page 29). adaptations. Financial assessments Depending on your young person’s financial situation they A financial assessment is carried may be asked to pay towards out alongside your young the cost of their support, which person’s needs assessment. The the Local Authority will help to assessment will work out how arrange. This might come as a much the young person will have surprise, but be aware that very to pay towards a service and how few people have to pay the full much the council will pay. It takes cost of their care. The amount into account the young person’s payable will be based on an assessment of the young person’s financial position and is also income and not your family used to check whether they are income as a whole. getting the correct state benefits. The mobility component of DLA Your young person is entitled to (Disability Living Allowance) (PIP financial support from the Local if over 16) should not be taken Authority if one of the following into account when the young applies: person’s income is assessed. If the service is for your young person, • the type of care and support your own finances should not be your child needs is already taken into account. provided free of charge
- 141 - Young people should not have gives young people and their to pay for services if they are families the right to request a receiving a service under Section personal budget as part of an EHC 117 of the Mental Health Act 1983. Plan. The Care Act requires local authorities to include a personal If there is a dispute about charges, budget in the care and support the service must remain in place plan (care element of an EHC while the issue is resolved. Plan) for young people over 18.
Personal budgets How personal budgets work
The way services are organised A personal budget is the amount for people who need extra care of money the local authority has and support has changed. If your worked out it will cost to arrange young person has been assessed the necessary care and support as being eligible for support, you for your young person. can choose to be given money to organise and pay for their support This includes any amount that or services yourselves instead the local authority is going to pay of relying on a ‘one size fits all’ itself towards those costs (this package decided by the council. could range from all of the total This is called a ‘personal budget’. to nothing at all).
The personal budget is meant to Personal budgets allow support to help the young person or you as be arranged in a number of ways. their parent, decide how much Your young person may choose to control you want to have over receive their personal budget as arranging their care and support, a direct payment, which they can by seeing how much money is use to arrange and pay for their available to buy the care that is support themselves. Or they may needed. choose for you or another carer to receive the direct payment and The Children and Families Act arrange support for them.
- 142 - Social care
Alternatively, the council can use Unless there are exceptional your young person’s personal circumstances you cannot use budget to arrange the support direct payments to employ a on their behalf – this is called close relative who lives in your a ‘managed personal budget’. household, although you can use Or their social care and support them to employ a relative who may be a mixture of both direct lives elsewhere. payments and ‘managed’ care. Until a child is 18, parents can ‘The problem we now have is that use direct payments to arrange she is getting heavier and one person and pay for services for their can’t lift her, so if we had any respite child. Young people over 16 we’d have to have two people.’ can take responsibility for direct payments or, if they are Direct payments 16 or 17, choose to share the responsibility with their parent. Direct payments are the main type of funding associated with Once a young person is 18, they personal budgets. You or your can still get a parent or carer to young person can use direct receive their direct payments payments to employ someone, and arrange support for them if often known as a ‘personal they prefer. In this case a parent assistant’ (PA), to care for your or another person manage their child, or to buy into a local service child’s financial affairs as an like a day centre or short break ‘appointee’. unit, but you can’t use them to buy into a service run by West Sussex If your young person is assessed County Council – these would as needing support, they can’t be arranged separately as part be refused direct payments if of the personal budget, as you they want them. The law says cannot purchase their services local authorities must tell you directly. about direct payments and support you if you want them. If
- 143 - you’re already getting services, What support is available your child’s social worker should to over 18s? already have told you about direct payments. The way adult social care support is provided is changing and so Why choose Direct Payments? how things will be in the future is uncertain. Because of cuts to Direct payments are worth funding from central government thinking about, especially if to local authorities, the council your child has been assessed as has to make huge savings and needing a service but has been on adult social care budgets are the waiting list for a long time. affected by this.
They may also work if you feel Many services aren’t provided you’re having to fit in with what’s directly by adult social care, but on offer, rather than getting the are commissioned or contracted services you think would most out to independent organisations. benefit your child. However, the first point of Direct payments give you greater contact for all the services we flexibility, but be aware that you describe is the Adults’ CarePoint will need to take responsibility call 01243 642121, or email for finding and organising the [email protected] support or services you want and for more information. for keeping accounts and records of how the money is spent. Find out about the adult social care support provided in Independent Lives has a website West Sussex on the Connect with advice on everything from to Support website at: www. direct payments to personal westsussexconnecttosupport.org. budgets and employing a PA. For It also has advice for carers as more information go to: well as information about support www.independentlives.org or groups, voluntary organisations, call: 01903 219482. charities and more.
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Finally, the Local Offer contains Day centres usually include a information about all sorts of range of activities and are used by local services including health and different age groups. They may social care. For more information provide a hot meal at lunchtime on the Local Offer go to page 4. and transport is frequently arranged, although a charge The following list provides a may be made. There are no day summary of the types of support centres catering specifically for your young person may be able to young people. use if they’re assessed as needing them. Remember, providers The following list is correct at can change and new services the time of going to press. We frequently become available for recommend that you check: www. purchase. In all cases, your young westsussexconnecttosupport.org person will need an assessment or the websites posted below to see what’s available in your area of needs before they can access and on which day and time as these services. If your young these could be subject to change. person has a social worker, For entries marked ‘*’ your young talk to them, or call the Adults’ person will need a social care CarePoint on 01243 642121 for assessment to access the service. more information. • 4Sight clubs and specialist Day activities groups offer social opportunities for people with Day activities refer to a range of sight loss. For more, go to: provision. For example, a young www.4sight.org.uk/clubs. person may have a package of • The Aldingbourne Trust daytime activities that includes runs a number of drop-in attendance at a day centre, sessions, activities and clubs, working in paid or voluntary as well as My Network, which jobs supported by social care’s is an information, advice Supported Employment Team, and guidance service. All and doing a college course. are designed to help adults
- 145 - with learning disabilities group and to live life to the and/or autism to reach their fullest. Young people can full potential with tailored access the Futures Life Skills support. For more, go to: Centre, which offers art, www.aldingbournetrust.co.uk. cooking, drama, and other • The Apuldram Centre, multimedia and sensory Chichester, has a day centre activities. There is also a that enables working fully accessible gym, spa, age adults with learning and hydrotherapy pool. For disabilities to take part in a more, go to: www.chf.org.uk/ wide range of occupationally futures-hub.html. focused and enterprising • * Chestnuts Day Centre, activities such as: horticulture, Bognor, *Glebelands Day woodwork, cookery, arts and Centre, Shoreham, *Glen Vue crafts. It also runs ‘hub club’ Day Centre, East Grinstead, with various activities. See: *Judith Adams Day Centre, www.apuldram.org/hub/ Chichester, The Laurels, • *Burnside Day Services, Day Centre, Rustington, Burgess Hill. Offer activities *Maidenbower Day Centre, linked to training, work, Crawley, are for people with independent living and dementia and or longer term/ leisure opportunities, such as: complex social care needs. travel training, road safety, The centres are mainly used independent living skills, and by older adults, but take money management. younger people if they can • Chailey Heritage Foundation meet their needs. Activities runs Futures Hub, which include arts and crafts, offers day provision to cooking, music and games. young adults aged 16+ with • Dimensions Outreach 3 Way disabilities including physical supports people with learning and complex health needs. It disabilities and autism. It runs offers the chance to develop a number of classes every life skills, develop a peer week and also has a day
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centre in Ifield, which runs • * The Rowans, Worthing is a groups and workshops. specialised service for people • Hollyrood, Lindfield provides with an acquired brain injury day centre services for people and/or physical disabilities with autism aged 18+. They and complex needs. A variety also support individuals with of activities are run including challenging behaviour or bingo, IT skills, cooking, epilepsy. Facilities include drawing and gym. a gym, woodwork centre, • Worthing and District Scope, pottery and sensory room. Worthing, has a day centre • Millstone Day Centre, Sayers providing activities for adults Common offers day services with disabilities including for those aged 18+ with karaoke, football, art, cookery autism, learning disabilities, and swimming. mental health issues and the elderly. Sessions offer Tips for choosing day activities activities such as cooking, IT skills, coffee mornings, Wii • Ask your social worker for a games, arts and crafts. list of day activities and where • *The Pines, Worthing, is they take place. for adults with learning • Arrange to see different disabilities. They can support activities and centres yourself. young people from local Ask how they could help meet schools and colleges who are the needs of your child. It’s transitioning to adult services important to get an idea of so they can spend time in what’s available and whether the centre before they start. you think your child would be Activities include life skills, happy there. drama, dance and singing. • Make sure that your young • The Point, Scope West Sussex person also gets the chance Day Centre, Chichester, offers to see the activities and look activities for people aged 18 round the centres, too. to 50 years.
- 147 - Short breaks or respite support, your young person will have to be eligible for adult social Short breaks or respite care aims care support and have had an to give families who care for a assessment of their needs. family member some time out from caring. There are no rules Crossroads Care offers daytime about where short breaks take and evening care in your own place, but it’s usually provided at home, either temporarily or other people’s homes, residential regularly. For more, go to: homes, or by people coming into www.crossroadscare-sc.org. your home or taking the young person out. You can also arrange your own support, through an Individual The Aldingbourne Trust has a or Personal Budget or Direct service called ‘Support Workers Payments (see pages 142 to 144). Direct’ which matches the right carers with the families Home care services and individuals they support. The service offers personalised Home care services provide care packages at home, in the personal care for people in their community and respite support. own homes. Home care used For more information go to: to be called home help and in www.aldingbournetrust.co.uk those days included help with 01243 837866 or email: housework. [email protected]. Now, home care services help Outreach 3 Way provides short only with personal care such as breaks and respite to people aged washing and bathing, getting up 18+ with learning disabilities and/or and dressed or getting ready for autism. For more information email: bed. Adult social care has a small [email protected] ‘in-house’ care service, but most or go to: www.dimensions-uk.org/ care needs are mostly provided short-breaks-respite-queens- by private agencies, all of whom lodge-west-sussex. To access this are registered with the Care
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Quality Commission. You can read For more information go to: more about the services available www.independentlives.org or call on West Sussex’s Connect 01903 219482. to Support website at www. westsussexconnecttosupport.org. Shared Lives Carers
Personal Assistants (PAs) Shared Lives is a scheme that links up adults with learning Some people assessed as needing and/or physical disabilities with home care services choose to get carers who provide support and Direct Payments (see page 143) accommodation in the carers’ so they can employ their own own home. Carers are paid, Personal Assistant (PA). trained and supported by the council and support can be either A Personal Assistant is someone on a full-time or short breaks who provides support to disabled basis. Read more about Shared children and adults. They may Lives in Chapter 10, or contact offer support with every day West Sussex County Council’s activities such as shopping, Shared Lives Scheme by calling: leisure activities, washing and 01444 254463 or emailing personal care. [email protected].
Your young person may have a Equipment and housing Personal Budget to pay for the adaptations support they need (see page 142). In West Sussex, Independent Whether your young person Lives has a website with advice on still lives at home, in private employing a PA. You can advertise rented accommodation or social for a PA on their vacancies board, housing, the Local Authority may or use their online database of be able to help them to live more PAs to find the right person for independently by providing you. They can also offer a payroll equipment or adaptations to the service if you are employing a PA home that make daily life a bit and need some help with this. easier.
- 149 - Adaptations might include employment; or the funeral of a providing ramp access, adding close friend or relative. handrails, widening doors, raising electrical sockets, replacing a You will be asked to draw up bath with a level access shower, and register an emergency plan, or equipment for people with giving details of people who may hearing or visual difficulties. be able to provide care in your These adaptations might be absence. If you don’t have family part or fully funded by the Local or friends who could help at short Authority, depending on your notice, the Local Authority may young person’s circumstances. provide back-up services.
Your young person will need to There’s no charge for carers of be assessed by an Occupational disabled children. The scheme is Therapist (OT) from adult social run in West Sussex by Chichester care to see if they are eligible for Careline with the support of the adaptations. To find out more, call County Council. The scheme the Adults’ CarePoint on: includes a card for you to carry in 01243 642121, or email: case you have an accident or fall [email protected]. ill and can’t explain you care for someone. Carers Emergency Back-Up Scheme If you, or your young person has a social worker, then they This scheme aims to give peace can help you register with the of mind to carers by providing Carers Emergency Alert Scheme, home-based care for up to 48 otherwise call 01243 778688 for hours in an emergency where more information, or go to the carer is unable to look after www.chichestercareline.org.uk. their young person. This may be because of: health issues for Sight and hearing difficulties the carer; the carer’s admission to hospital; a family emergency West Sussex’s Rehabilitation like a close relative being taken Officers for the Visually Impaired ill; a real risk to the carer’s (ROVIs) provide specialist
- 150 - Social care information, advice, assessments The Carer’s Assessment and equipment to support independence for people of If your child regularly relies on any age with visual or hearing you for care you have a legal impairments. They deal with right for a Carer’s Assessment. referrals for people with sight or Adult Social Care should make hearing difficulties, their friends you aware of this right when they or family or other professionals. carry out a Needs Assessment for your young person. Based at the Adults’ CarePoint, you can contact them by calling Although separate, the Carer’s 01243 642121 or emailing: Assessment can happen at the asvisual.impairment@ same time as the young person’s westsussex.gov.uk. Needs Assessment. It supports carers by ensuring: Your needs as a carer • Their work, education, Parent carers are used to having training and leisure needs are to cope and asking for help can be considered. difficult, but your needs as a carer • That as the carer, they have matter, too. a choice about the type of As a carer you are entitled to an caring tasks they do. assessment of your needs, even • The young person they are if your young person has not caring for gets the right been assessed or is not receiving support and services. any services from the social care. You can ask for a carer’s If your child is under 18, contact needs assessment via the Adults’ the Child Disability Team on CarePoint. 01403 229888, or ask your social worker (if you have one) for a ‘As parents, we feel we should cope; Carer’s Assessment. we push ourselves time and again. I’ve learned that at certain points I can say, If your young person is over 18, “I’m sorry I can’t do this anymore.”’ contact the Adults’ Social CarePoint
- 151 - call 01243 642121, or email • If you need further support [email protected] to and information about social ask for one. care contact Carer’s Support West Sussex: ‘I personally found the Carers www.carerssupport.org.uk. Assessment emotionally draining. • If you need an interpreter for Thinking about my role as a carer, this assessment, the Local Rachel eventually living away from the Authority should provide one. family home and what might happen • Make sure you are getting to her when I am no longer around all the financial support and were really difficult issues to verbalise. benefits you’re entitled to as These and other difficult issues needed a carer. They can help with to be raised but were terrifying.’ some of the costs of caring, or contribute towards your • Be realistic about what you pension entitlements in the can manage in the long- future. term and when your son or daughter is not at school or Other support college every day. • Don’t hold back. Spell things Discussing ideas and tips regarding out and don’t expect others to services and provision, and sharing read between the lines. worries and concerns with other • Try to get reports and parent carers can help you feel as supporting material before you though you’re not alone. There apply to back up your case. are numerous local groups for • Make sure your needs as a parent carers where you can find carer are fully considered. support – more details can be • Talk to people who have found in the directories at the managed to get funding back of the book. There are also so you can learn from their a number of support groups for experience. carers. You can find out more at • If you are turned down at first, www.carerssupport.org.uk, who get a written reason why. Try also offer phone support and to address the problem and counselling. Call: 0300 028 8888 reapply. for details.
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‘People have different thresholds. You behaviour is challenging or whose accept your own threshold and never disabilities are complex. question whether it’s reasonable to have to do all that you do.’ Under the Care Act 2014, the needs of siblings needs can be The Carer’s Wellbeing Fund assessed, and respite for them considered. Explain your concerns The Carer’s Wellbeing Fund is run in to Adult Social Care and ask for a partnership by Carer’s Support and ‘Young Carer’s Assessment’. West Sussex Parent Carer Forum. If your application is successful, Support for young carers can the money could go towards include: things such as paying for a gym membership to help you stay fit • Regular breaks from caring and healthy, or you may choose to so they can spend time use it to do a course or have a break with friends and enjoy the without the person you are caring same opportunities as other for. More information can be found children and young people of on the Carer’s Support website: the same age. www.carerssupport.org.uk, tel: • The chance to meet other 0300 028 8888. The application young carers at local groups. form is also available on West • Ensuring the young carer has Sussex Parent Carer Forum’s support from other adults in website: www.wspcf.org.uk, tel: their life and has someone 01903 726188. to talk to when things are difficult. Young carers • Supporting young carers during transition and Coping with a young person’s significant life changes. disability or additional needs can be difficult for siblings. They To access the service, call: may have to take on household 01903 270300, or email: chores, or help with some care [email protected] tasks and it can be emotionally or go to: www.westsussex.gov.uk/ draining living with people whose youngcarers.
- 153 - Making complaints about You can also use the Local Adult Social Care Authority’s complaints procedure if you are unhappy with the So what if you’re not happy with assessment – for example, if: decisions made by children’s or adult social care or the support • the local authority refuses to your young person receives? assess you • you have been waiting too What the law says long for an assessment • you are not happy with how By law, social care departments the assessment was done must have a complaints • you feel your child is not procedure and a complaints getting the services they need officer. Social care services must • you are being asked to pay be able to give you information too much for the services about how to make a complaint, • you have problems with the where you can get help to services being provided. make one, and how quickly the complaint will be dealt with. How to complain
Anybody who receives support To make a complaint, it is best to from social care services can start by speaking to your contact make a complaint about a service from the Adults’ CarePoint. they get or one that they feel has been unfairly refused. The However, you can also make a complaint can be raised by the complaint through their customer young person, or by a family relations team by calling: member such as yourself, or 01243 777100 (ask for the Customer a friend. If your young person Relations Team) or emailing: has the mental capacity to give [email protected]. their consent they must give permission for you to complain You can also speak to on their behalf. Healthwatch about any issues you
- 154 - Social care are having. For more information to sue the Local Authority for a and contact details, see page 157. ‘breach of its legal duty’ (though this can be difficult to prove), or If you’re not happy with the to get a judge to rule on whether outcome of your complaint, you the council’s actions were legal, can consider taking the matter rational and reasonable (a process further by raising it with the Local called ‘judicial review’). Government Ombudsman (LGO). Call them on 0300 061 0614 or Again you’ll need legal advice. email: [email protected]. You If you can’t afford to pay for a can visit their website for more solicitor, and you meet other information about how they conditions, you may be able to might help at: www.lgo.org.uk. get public funding (legal aid) to help pay for legal expenses. Local authorities must have a The Disability Law Service offers ‘monitoring officer’ (someone free legal advice and a casework who makes sure the council is service for disabled people. Visit doing what the law says it must www.dls.org.uk to find out more do). So if you think it has broken or ring 0207 791 9800. the law (for example, if it won’t pay for residential care when you This may all sound very daunting think the law says it should), you but don’t be put off making a can ask the monitoring officer complaint if you have genuine to look at your case. Your local concerns, as many problems can be councillor or MP may also be able resolved in the early stages without to help. If these steps don’t sort having to resort to taking the out your problem, you can take more serious steps outlined above. your case to the Secretary of State for Health – but you’ll need legal advice before you do this.
Another possibility is to use (or threaten to use) the courts, either
- 155 - 8 Health and medical matters
If your child has health needs, as needs it’s important to know that part of their transition planning once they reach 18 years of age, you’ll need to think about the their care will be taken over by switch from children’s to adult their GP. health services, to ensure they get the support they need. It is Some services may also be less helpful if you can try to anticipate specialised. For example, a young changes in your child’s health person with joint problems may needs as they grow older and always have been seen on the encourage them to take more same children’s ward, but once responsibility for their own they reach 18 years of age they’ll health, if possible. need to use a general hospital ward, where the majority of other Education Health and Care Plans people may be elderly. (EHC Plans) include more detail about a young person’s health Other therapies and services may needs. As an EHC Plan continues stop altogether, or not have an until a young person is 19 years equivalent in adult services. For old, or 25 years in some cases, instance, your family may receive this should help with planning therapy from the Child and their transition to adult health Adolescent Mental Health Service services, as a number of things (CAMHS), but not from adult are different. mental health services.
If you have had a community In this chapter we explain how paediatrician from a Child health services are organised and Development Centre (CDC) how the transition from child to overseeing your child’s health adult health services should work.
- 156 - Understanding the NHS can find out which trust runs your young person’s hospital by going The way many health and social to: www.nhs.uk and searching care services are delivered locally under ‘services near you’. and nationally has changed since This will bring up information the Health and Social Care Act about the hospital, including 2012 was brought in. At a local the address, plus contact level, the council has a stronger information for the relevant role in shaping services and has trust. It is worth remembering taken over responsibility for local that under patient choice rules health improvement. patients can choose which hospital they are referred to. There is now a Health and Wellbeing Board that is made Sussex Partnership NHS Trust up of elected representatives, as provides mental health, learning well as people from NHS Clinical disability and substance misuse Commissioning Groups, local services for adults of all ages. councils, voluntary organisations Sussex Community NHS Trust and Healthwatch. This board provides a range of community decides the best way to improve health services including local health and well-being. community nurses; continence The way the money for health services; rehabilitation, is spent is decided by Clinical wheelchair and equipment Commissioning Groups, which services; and speech and give GPs and other health language therapy. workers responsibility for making those decisions. And the Care Healthwatch is the new health Quality Commission has to make watchdog intended to provide sure that services meet safety information about health services and quality requirements. and give users a voice in how they are run. If you need advice or Hospital or ‘acute’ services are information about health services provided in West Sussex by a in West Sussex, or if you’re not number of different trusts. You happy with the service you or your
- 157 - child have received, Healthwatch If you are happy that your child’s should be able to help. In West current GP is the right person to Sussex, Healthwatch is based in support them, it pays to build Billingshurst, but the team also a relationship with them in runs a ‘listening tour’ which travels advance. Make sure you talk to around the county to gather them early if there are things to concerns, suggestions, queries and discuss. Remember that, once comments on health services. your child is an adult, the GP will not be able to discuss their health If you have a query or a problem, you with you in the way they can can call Healthwatch for support and about a child. advice. For more information, call: 0300 012 0122, email helpdesk@ If you think another GP would healthwatchwestsussex.co.uk, work better for your child, you or visit their website: could change to another doctor in www.healthwatchwestsussex.co.uk. the practice, or move to another practice altogether. The easiest If you decide to make a way to find another GP who’s complaint about NHS care accepting new patients is through or treatment, Healthwatch’s the NHS Choices website at Independent Complaints www.nhs.uk. The website Advocacy Service (ICAS), can includes service reviews from help you. You can contact them other patients. If you’re not on 0300 012 0122 or email: ihcas online, there should be a list of @healthwatchwestsussex.co.uk. local GPs at your local library.
Your child’s GP If a child is currently under the care of a community As your child’s GP will be central paediatrician, they should share to their health care from the age information with the GP – but a of 18 – it’s a good idea to think parent plays an important role in about whether he or she has the helping the GP fully understand right GP to support them before a child’s condition or learning they reach adulthood. disabilities. The truth is, after
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Health and medical matters years of going to specialist Community paediatricians can appointments, reading reports see a young person until they about your child, and caring are 19 years old. In-patient and for them on a daily basis, you out-patient care at hospital will will know their condition inside usually be alongside adults from out. Be prepared to share this 18 years of age. For acute health knowledge with your child’s GP care, your child may attend to bring them up to speed so that adult clinics from 16, although you can work together to ensure some specialist consultants may your child gets the best care. continue to see a young adult after they are 18 years of age. The transition to adult health services Some services, like speech and language therapy, may stop seeing your child at 16 if they Preparation for the transition to leave school. adult services takes place from about 13 years to ensure that The Child and Adolescent Mental you and your child are ready and Health Service (CAMHS) may see understand what to expect from existing patients until they’re 19, adult services. although new referrals are passed to adult mental health services. For many services the switch from child to adult services Health services are responsible happens at 18, but this can vary. for identifying whether a young It’s important to find out what person is likely to have on-going happens with the specific services healthcare needs and to make your child uses and to plan ahead. sure these needs are met when they leave school or become an GPs see people of all ages, of adult. They should ensure there’s course, but they will start to a clear process for transferring expect young people to see them responsibility and information, independently from 16 or 17. but parents also have a role in helping this go smoothly.
- 159 - Children’s health services are Tips for managing the transition free, but adults have to pay for some things like dental care and • Health services have different prescriptions. However, if your arrangements – wherever young person is getting benefits possible, ask staff what will or on a low income, they can happen when transition to get free dental treatment, free adult services takes place. prescriptions, free eyesight tests Talk to staff and other parents and vouchers for glasses, free wigs, to get information about boots or other appliances and choices you could make now. transport to and from hospital. • There are steps you can take now that will ease the change. Prescription prepayment For example, you could certificates arrange to visit a new clinic or ward before your child needs If your young person has to to attend. Some services pay for prescriptions and they offer a joint appointment are on several medications, with children’s and adults’ it may be worthwhile to look at getting a prescription pre- services just before the swap payment certificate (PPC). This to adult services. Ask if this is allows you to have as many NHS an option. prescriptions as you need for a set price. You can purchase a three- Transition planning and the month certificate for £29.10, or health care plan a 12-month card for £104 (prices correct at time of going to press). Chapter one covered transition If your young person needs planning for children who have more than three prescriptions EHC Plans. Some of our children over three months, or 11 over have ongoing health needs so the course of a year, it will be these will need to be focused on cheaper to get the card. For more as you consider what help they information go to www.nhs.uk and will need in adulthood so it can search for ‘prescription certificate’ be written into their EHC Plan. or call: 0300 330 1341. Other children may not have any
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Health and medical matters particular health needs and you’ll currently oversees their care just need to make sure their GP should draft the first ‘health knows all about them and their care plan’ following the meeting needs in good time. and this must fit alongside the EHC plan. They should advise on If your child does have ongoing services likely to be needed and health needs, health professionals discuss arrangements for transfer are unlikely to be able to attend to adult services with your child, many, or perhaps any, of the the GP and you. Later, having transition planning meetings at obtained your child’s consent, school, but they can be asked they should make any referrals to to provide a written advice. Let adult health services and arrange the school know who’s involved the transfer of records. in providing health services for your child, so they know who If your child is also likely to have to ask. New professionals, such care and support needs at 18 as a rehabilitation medicine from adult social care they should specialist, adult neurologist or also have a transition assessment occupational therapist (OT), may for this. This can be carried out need to get involved in planning alongside any health transition for transition. assessment. And again the EHC Plan can be used to coordinate all From Year 9 onwards annual three. reviews should planning to maintain good health in adult As with all transition planning, life. Health professionals involved the health care plan is not a one- in the management and care off document and it should be of your child should provide changed and added to as your advice in writing and where child moves through transition. appropriate, attend the Year 9 It should be completed in your annual review. If your child has child’s final academic year and health needs that will continue may need updating again just into adulthood, the person who before they leave school.
- 161 - Encouraging independence The progress towards a young person gaining as much As parents, we’re used to looking independence as possible begins after our children’s health and we’re with us as parents gradually good at spotting when they’re handing over responsibility to the unwell or in pain. Chapter two young person. For most young covered the parent’s role in helping people, the road to independence teenage children make choices and includes learning to look after communicate their opinions so their own health needs. they can become as independent as possible as adults. This applies Young people communicating to their health needs, too. their health needs
Some young people with complex Young people with disabilities, health and social care support chronic illnesses or learning needs will need help to express disabilities have to learn to themselves. Other young people communicate their health needs may have such profound needs as much as possible. they will remain dependent on adults for on-going care. But if It’s important to develop skills, it’s possible, letting others know relationships and confidence you feel ill or that something hurts is an important skill to when speaking to health workers. learn. It is okay to expect more An early step may be to ask information and to have a central health professionals to direct role in the decisions made about questions to your young person you and your child’s life. It’s rather than addressing you. understandable if you want to keep a close eye on the health You may need to help your child and care services your child gets learn the right vocabulary or as an adult, but encouraging signs to talk about their body and them to think their feelings and health. One day they will need opinions matter and should be to be able to let other people listened to is also part of keeping know where it hurts or feels them safe in the future. funny, without you to explain
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Health and medical matters for them. Make sure your son or The Mental Capacity Act 2005 daughter knows when to share covers your child’s rights to health information. It’s important make their own decisions if they understand the difference they have ‘mental capacity’ – between a doctor asking them including decisions about health to talk about their health, when and medical treatment. It also they need to tell them about sets out how decisions should any problems they are having, be made with and for them if and someone asking them they don’t have the capacity how they are as part of a polite to decide for themselves. In conversation, when detail isn’t these circumstances, once your needed and in fact might be too young person is 16, a medical much information! professional is likely to be the decision-maker rather than you ‘If anyone were to ask me what the parent. But the decision- message I might have for others I maker should get the views of would tell them that they should those close to the young person listen to, believe and respect young unless it is a medical emergency. people. It’s very difficult to tell See page 29 for more on the anyone how you feel when they Mental Capacity Act. won’t listen; if you aren’t believed then you stop believing in yourself; if you’re not respected then you lose Bear in mind that children your self-respect and everyone needs under the age of 16 can also be self-respect.’ judged as being competent to make their own decisions about A word about the Mental health care if they are seen to Capacity Act and health have the necessary maturity and understanding. For example, When a young person reaches a GP or clinic could prescribe 16, they’re legally classed as an contraceptives in confidence to adult in terms of decision-making a 15 year old who asks for her about their health. parents not to be involved.
- 163 - Confidentiality and medical to adult services in time for their records first meeting, which means you will have to go over the The confidentiality of patients’ young person’s medical history health information is enshrined at the first appointment. The in codes of professional conduct. benefit is that you have the Everyone has the right to opportunity of a fresh start have a copy of their medical with a new service. It’s a chance records and the records should to establish new relationships be presented in a format that with professionals and put any patients understand. If the past misunderstandings and patient is under 18, anyone disappointments behind you. with parental responsibility can You’ll also be able to use past apply to see their child’s medical experience to explain your records, but if the GP or doctor situation and say what your child responsible believes that your needs – or help your child to child is competent to make their explain for themselves. own decisions about health, they should check that they consent Managing medical to this. Once a young person is over 18 you’ll always need a letter appointments giving their consent, or a ‘power of attorney’ to see them. Assessments, appointments, consultations or visits by health If for some reason you are denied professionals can be stressful, access to your child’s medical worrying and tiring. It’s common records or their records have for healthy, fit adults to forget been lost, contact Healthwatch a lot of what has been said and for help – see page 157. even more difficult for tired or anxious people. Bad news or Transferring medical records to painful information can come adult services as a shock. It can feel difficult to ask the right questions to get Sometimes a young person’s the information you need. You medical records aren’t transferred may have lots of experience in
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Health and medical matters handling this, but have you also How to be prepared thought about teaching your young person how to cope? Being prepared for each appointment with health ‘I have found that even the most professionals is important. It’s informed doctor or health person helpful to talk to your young person cannot provide the most basic of beforehand, when you both have information if you don’t phrase a quiet moment to think at home, the question in the right way. It’s and write down all the things you frustrating because often you don’t both want to discuss. You or your know the right question to ask. The child could also choose a friend only way as I see it is to keep making it to go with you to prompt you clear that you need clarity and detail. and remember what’s been said. When I had to deal with the last Take a list of questions into the problem which didn’t seem to have a consultation, and note down the solution, I asked the doctor what the responses. It may take longer, but possibilities were, and this got a much when you get home you’re more better response.’ likely to have the information you need. Then you and your child The coping question can talk it over to make sure your child has understood, too. Sometimes, parents and young disabled or chronically sick people Preparing can also be a positive may say everything is fine and opportunity to talk about issues they’re coping, when this isn’t true. together, as well as helping your child to practise thinking through You and your child face your their options. challenges 24 hours a day, seven ‘There is an underlying principle days a week. You know what the that we should never assume problems are and what some of anything. We’re always left having to the solutions may be. Tell the assume, because we’re not informed professional what your concerns adequately by the ‘experts’. It’s and needs are, and help your child imperative to find out the facts, to do the same. because, as we have all experienced, our assumptions are often incorrect.’
- 165 - Tips for appointments • contraception, including long-term and emergency • Think ahead about the contraception information you need from a • access to condoms consultation. Write questions • testing and treatment down and involve your child for Sexually Transmitted as much as you can in this Infections (STIs) thinking process. • chlamydia testing for under 25s. • Your child’s worries may be • pregnancy testing and different from yours, so check counselling if there’s anything they want • psychosexual counselling to talk about or find out. • Is there a leaflet or a website Details of sexual health clinics you can look at with your child and access to other services in so they can see where they are West Sussex can be found at www. going and what equipment sexualhealthwestsussex.nhs.uk. they may see there? • Politeness, firmness, Mental health services persistence and a good sense of humour help if the medical The teenage years can be an professional doesn’t seem to emotional rollercoaster for young ‘get’ what you and your child people. As parents we know need from them. they’ll face the physical changes of puberty, but there are also psychological changes that will Sexual health services affect our children’s behaviour and emotional well-being. Many Although it can be uncomfortable teenagers become more moody, to think about your young person self-centred or reckless. having a sex life, it is important to be informed and make sure that Many teenagers have times they know what sexual health when they feel anxious or low. services can offer. They provide: All local secondary schools
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Health and medical matters and colleges offer counselling their families. CAMHS workers for young people. If your child are based in the community or doesn’t want to be seen seeking clinics and include a variety of help at school, they can get practitioners including therapists information and advice from one and psychiatrists. of the FindItOut Centres that run across West Sussex. Go to www. If your child is 18 and no longer westsussex.gov.uk/education- at school, they may be referred children-and-families/your-space/ to Working Age Mental Health life/finditout-centre for more (also known as adult mental information. health services) which provides mental health care for adults. For some young people, mental Young people already getting health issues during the teenage help from CAMHS should move years may become more serious. over to this service at 18 – or And for a few, significant mental if your child doesn’t meet the health needs may emerge. criteria for adult mental health Persistent depression, high services, the CAMHS worker may anxiety, serious eating disorders suggest discharging them. Their or really difficult or unusual GP would then take over their behaviour are good reasons for care. You can query this and ask looking for outside help. for an assessment.
If you’re worried about your son Working Age Mental Health is or daughter’s mental health, you responsible for the provision of can talk to your GP and they may all mental health services for refer you to Child and Adolescent adults from 18 to 65. Services Mental Health Services (CAMHS). are provided through multi- Schools and other professionals disciplinary Community Mental working with your child can also Health Teams, day services, refer to CAMHS. It provides help in-patient care, outreach team, with a wide range of mental rehabilitation services, group health problems for children homes and hostels. and young people up to 18, and
- 167 - Doc Ready is a new website about learning disabilities and to help young people who are how to be helpful and clear. After experiencing mental health the health check, the GP writes issues to prepare for their GP up a health action plan and sends appointment, and get ‘doc ready’ it to the patient. by building a checklist of what to talk about and learning more Parents who have been to one of about confidentiality and rights. these health checks with their son It’s designed to get a two-way or daughter have been impressed discussion between the young with how thorough it is and feel person and GP flowing more the GP is better placed to support quickly, so both parties get the them as a result. Anyone over most out of the limited time they the age of 14 who is on their have available in an appointment. GP’s learning disability register Go to www.docready.org. can have an annual check. It’s a great way for your young person Annual health checks to start their transition to adult for people with learning health care. disabilities If your son or daughter has a learning disability and has not All adults with learning disabilities been offered a health check by should now be invited by their the time they reach 18, you can GP for an annual health check, ask your GP for one. For more which covers physical, mental and emotional wellbeing. There information, go to: is a health assessment pack www.nhs.uk/conditions/learning- for the patient to fill in with disabilities/annual-health-checks. the help of a carer before the appointment. The appointment Community Learning should be longer than the usual Disability Teams GP appointment, so there’s time to talk and not feel rushed or There are three Community confused. Local GPs have been Learning Disability Teams in West trained so they understand more Sussex. The Coastal Team is based
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Health and medical matters at Centenary House, Worthing, The intensity of support given the Northern Team at Parkside, is decided using an initial Horsham, and the Western Team assessment of need. For families at Durban House, Bognor. who have young people moving to adulthood, people working Community Learning Disability with them will consider how Teams consist of staff from transition and other related Sussex Partnership NHS Trust and issues may affect them. Staff West Sussex County Council. They may work directly with the include NHS staff from a variety young person, with their family, of specialities, including: learning their wider network of support or disability nurses; occupational sometimes indirectly. therapists; psychologists; physiotherapists; psychiatrists; For young people with significant and speech and language challenging behaviour, there is an expert Enhanced Support Service therapists. They are based with that works across the Community social care managers and social Learning Disability Teams to workers from West Sussex County improve outcomes. Council. They work closely to deliver the service in partnership. The overall aims of the enhanced support services are as follows: The teams work with people aged 18 years upwards who have • ensuring high quality care a diagnosed learning disability. for those who present with They aim to support people with complex challenging behaviour their physical and emotional • developing capable health, as well as behaviours that environments and reducing challenge others. Referrals are placement breakdown/in- taken from any source, although patient admissions they prefer that referrals for • ensuring people are eating and drinking needs come supported safely and via GPs. effectively using the least restrictive approaches
- 169 - • increasing quality of life stakeholders can develop and • working with family carers learn. The network will meet and people using the service quarterly in a central localtion in to ensure outcomes are co- West Sussex, which at the time produced of going to press may vary. There • creative ways of working will also be an annual focus on • disseminating and discussing parent carers’ experiences. local and national guidance around this specific group For more information on • training opportunities Community Learning Disability • sharing knowledge and best Teams, contact: practice • developing evidence-based Horsham Area – CLDT North care though national agendas Telephone: 0330 222 8600 and policy Email: ctpld.north.duty@ westsussex.gov.uk The Enhanced Support Service also delivers the West Sussex Worthing Area – CLDT Coastal Behaviour Support Network, Telephone: 0330 222 7778 a venture between West Email: ctpld.coastal.duty@ Sussex County Council, Sussex westsussex.gov.uk Partnership NHS Foundation Trust, service providers and Bognor / Chichester Area – CLDT families in West Sussex who Western support adults with learning Telephone: 0330 222 7888 disabilities and/or autism who Email: ctpld.western.duty@ present with complex challenging westsussex.gov.uk behaviours. There is also a Specialist Clinical Bringing together providers, Assessment Service, designed for practitioners and families in people without a diagnosis of a this field will support this work learning disability, who may have by providing a forum where undiagnosed autism or other
- 170 - Health and medical matters neurodevelopmental disorders. The service offers assessment, consultation and sign-posting. You can contact them by calling: 01903 846656, email: referrals. [email protected].
Further help on health
Many national organisations specialise in supporting families and individuals with a particular illness or disability, including Scope, Mencap, Young Minds and Arthritis Care.
Contact (https://contact.org.uk) can provide details of the organisations relevant to your child. Some of these national groups recognise the needs of young adults are different and provide specialist information, support or training for people in transition. Try asking them what they have available for young adults.
- 171 - 9 Employment and life skills
‘I just want my son to be included in Where to look for work the workplace as a member of the community.’ If your child is ready to look for a job, a Saturday job or summer job Many of us hope that one day might suit them before they leave our young person will be able to school or college. There are many get a job. Now young people are websites that list job vacancies expected to stay in education including: or training until they’re 18, they can’t leave school at 16 and get a • The Department of Work and full-time job as they might have Pensions (DWP): done in the past (see Raising the https://findajob.dwp.gov.uk Participation Age, page 43), but • The Argus: you will still want to help them www.theargus.co.uk/jobs take the right steps towards • Gumtree at: employment. Some of us may not www.gumtree.com/jobs see a paid job as a realistic goal • Jobs at West Sussex for our child but could imagine County Council: them volunteering. www.westsussex.gov.uk/jobs • West Sussex County Times: This chapter provides an www.wscountytimes.co.uk/ overview of the options available jobs. to young people, including volunteering and employment. Alternatively, your young person Further information regarding could visit their local Jobcentre employment and benefits can be Plus. In West Sussex, Jobcentre obtained from www.gov.uk. Plus are based in Bognor Regis,
- 172 - Chichester, Crawley, Haywards There is information for young Heath, Horsham, Littlehampton people aged between 13 and and Worthing – see the local 25 on Your Space, West Sussex directory at the back for more County Council’s site for young information. Jobcentre Plus people. It has links for work, helps employers fill vacancies; volunteering and apprenticeships: and provides help and benefits www.westsussex.gov.uk/ for people who can’t work. They education-children-and-families/ also have specialist Disability your-space/earn. Your young Employment Advisers – read person can also get face-to-face more about these below. advice at one of their FindItOut Centres: www.westsussex.gov.uk/ If your young person is looking education-children-and-families/ for work, it often makes sense your-space/life/finditout-centres. to approach your contacts and friends. Some of us have West Sussex Library Service persuaded a local shop or offers access to MyWorkSearch, business to give our child a few which has links to books, hours’ work experience and this magazines and online resources, has led to paid work. as well as helping people to train, write CVs and apply for But most of our children will need jobs in the area. For more some extra support to be ready information, go to: https:// for and to find employment. arena.westsussex.gov.uk/web/ We’ve found that it’s a good idea arena/learning/workskills. to talk to other parent carers and professionals to get some ideas Scope also has advice on how to and pick up tips about things. For find a job, including networking, example, teachers may have good training and where to look. For advice on how to find voluntary more information, go to: work, get work experience or may www.scope.org.uk/Support/ be able to suggest other sources Disabled-people/Work/Jobseekers/ of help. finding-jobs.
- 173 - Disability Employment The Work and Health Programme Advisers (DEAs) is a scheme that provides a full range of support to people Disability Employment Advisers facing significant barriers to or DEAs work in your local work, including those with health JobCentre Plus. A referral conditions and disabilities. It to a DEA is usually made by offers assistance with personal a Jobcentre Advisers. DEAs skills, support in the workplace can provide details about and help in developing a career government initiatives that in the longer term. There are a help disabled people get work number of organisations working in West Sussex who can support and provide referrals to suitable your young person with this schemes – see the Work and programme, including Pluss: Health Programme. They also www.pluss.org.uk. provide advice on suitable job vacancies and approach the Access to Work is a scheme employer on the young person’s that can provide practical and behalf if necessary and conduct financial support to help people an ‘Employment Assessment’ with disabilities into work. The to identify the young person’s programme can help to pay for: abilities and suitability for work or work-related training. • A communicator to help at interviews if a person is deaf After making initial contact, the or has an hearing impairment. DEA will arrange an in-depth • A reader to help people at interview with the young person work who are blind or have a to establish their interests, visual impairment. previous work experience and • Special equipment or education and any concerns they alterations to existing have about work. It can be useful equipment. for parents to attend, although • Alterations to premises or the it’s not always necessary. working environment to make it accessible.
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• A support worker to provide • If your young person might practical help at work or want to work with children, getting to work. see if they can help out with • Help towards the cost of an organisation such as Cubs getting to and from work if or Brownies. a person can’t use a car or public transport because of Supported internships, their disability. traineeships and apprenticeships For more information on Access to Work, call: 0800 121 7479, Supported internships textphone: 0800 121 7579 or go to: www.gov.uk/access-to-work. Supported internships are a government funded initiative Tips to help you that offer specialised employment-focused study • If your young person is going programmes for young people to places such as Jobcentre aged 16 to 24 with learning Plus, it’s a good idea to take difficulties and/or disabilities who along any paperwork that have an EHC Plan and are ready will help explain their special to move into employment but needs – a recent report from need extra help to do so. a doctor or educational psychologist for example. Supported Internships are run • See it as a long-term project through further education to help your young person colleges and the idea is that show what they can do. trainees will learn from expert • Volunteering in a charity shop career coaches while doing can help them get paid shop real jobs for a minimum of six work and also means that months. Employers will also they have someone to give receive support from the coaches, them a reference when they to give them the skills they will leave college need to work with disabled
- 175 - young people and to help them Off the job, usually on a day- understand the business case for release basis, apprentices employing a diverse workforce. receive training to work BASE – the British Association towards nationally recognised for Supported Employment qualifications. Young people over has more information about 16 and not in full-time education supported internships on their can undertake an apprenticeship. website: www.base-uk.org/policy/ They can take between one and supported-internships. Locally, four years to complete depending supported internships are offered on the level of the apprenticeship, at Plumpton College. For more information, go to: the apprentice’s ability and the www.plumpton.ac.uk. industry sector. The minimum hourly rate in 2018 is £3.70 for the Traineeships first year, after which apprentices receive the national minimum The new mainstream traineeships wage for their age group. programme aims to give 16 to 24 year olds the workplace experience Employers and trainers are and job skills that employers require offered incentives to offer and are open to disabled young apprenticeships to young people people with less complex needs. with special educational needs The aim is to get young people and/or disabilities. Grants of into work or onto an apprenticeship. £1,000 are available to employers The programme covers things like and training providers and, if the work research and preparation business employs fewer than 50 training as well as English and Maths training and a work placement. people, they do not have to pay for the young person’s training. Apprenticeships To find out more about supported As employees, apprentices earn internships, traineeships or a wage and work alongside apprenticeships go to: experienced staff to gain job- www.gov.uk/apply-apprenticeship. specific skills.
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Alternatively, you can also find independently or with family out about apprenticeships, career carers. Priority is given to people tasters and volunteering at: who are receiving support from www.westsussex.gov.uk/jobs/ adult social care. The service works apprenticeships, which has an in partnership with My Network interactive map. providers to make sure individuals get the support they need to Other initiatives in West Sussex continue to live independently in their own homes. Network West Sussex is an initiative that is run by The My Network Plus is a referral only Aldingbourne Trust, Circles service via West Sussex County Network, Signposts (Mid Sussex), Council’s Learning Disability Options LD, Outreach 3 Way, Teams, which each have a named Worthing Mencap. Together these link worker for the service. To organisations offer preventive access My Network Plus, people services for people in West Sussex must be aged 18+ and live in West who have learning disabilities. Sussex. They must have a tenancy or live with family carers and My Network consists of drop-in require information, advice and sessions at venues across West Sussex. They offer information, support to prevent their needs advice and guidance on housing, becoming substantial or critical. leisure, learning, money management, health and much My Network Plus customers will more. Activities and workshops have their support needs met in have a focus on helping people a range of ways, with group or to live independent lives.People one-to-one support available. must be aged over 16, but Typically one-to-one support will enquiries are also welcomed from be for financial management, family carers and friends. paperwork, developing and maintaining life-skills, monitoring My Network Plus is a housing health andwellbeing, emotional support service for adults with support, practical assistance, learning disabilities who live planning, as well as providing
- 177 - links to other services and support WorkAid has two areas of available in the community. Every support: My Network Plus customer has a named keyworker who can give • Work Preparation: supports one-to-one advice. people who have never worked by providing The Aldingbourne Trust offers individual support and supported on the job training, training to ready them for life skills coaching, community the workplace. It covers learning and tailored packages to topics such as how to search help every adult with a learning for work and apply for jobs, disability contribute to their what is expected of an community. It can also offer employee in the workplace, support to employers. how to behave, what to wear, time-keeping and travel Aldingbourne Trust’s employment training. Supported work service, WorkAid, is designed to tasters and work experience help local businesses, communities, opportunities are available. people with learning disabilities • Supported Employment: and those on the autistic spectrum for people who have some to maximise their potential and enjoy life together. experience of work. Their employment consultant People supported by WorkAid will support them to build a have an employment consultant vocational profile identifying who works with them on an the environment in which individual basis to identify the they want to work, develop type of work they want to do and a professional CV outlining what sort of employment will suit their experience and search them. Employment consultants for the sort of jobs they want are also trained to help those to do. WorkAid will help seeking work to understand the individuals to identify and benefits system and how it will apply for jobs and provide fit with the type of employment support to prepare and attend they are seeking. interviews. When a job offer is
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made, WorkAid will assist with what work would suit them best. travel-training to get to work, Richard Lamplough, who runs if needed, and support the A Potential Diamond, is always individual once they start their happy to speak to parents on job. They will also work with the phone about how best they the new employer to help can guide their children on their with coaching, conducting journeys to paid employment but regular reviews to ensure face-to-face support is limited to that both the employer and young people attending Manor the employee are happy with Green School and Manor Green progress. College in Crawley. It might be possible for A Potential Diamond If an individual with a learning to support young people attending disability or autism already has a Crawley College, providing job and is in danger of losing it, funding has been approved WorkAid can support them via their through the college’s SENDCo. Job Retention Service. As well as helping the employee, employers Aspire Sussex runs adult can contact WorkAid for advice education courses across the and support to help ensure the county, including employability job is successful for all concerned. skills and qualification courses for those aged 19+. It also offers For more information, contact a programme for adults with The Aldingbourne Trust on: learning disabilities, which run 01243 546035 or email: within day centres as well as [email protected]. Aspire’s adult education centres. People with additional learning A Potential Diamond is an needs can be given extra support initiative working with young on qualification-based courses people with autism or learning such as English and Maths. For disabilities to maximise their more information, call employment opportunities. They 0345 601 0161, email: look at the person’s strengths [email protected], or and build an understanding of go to www.aspiresussex.org.uk.
- 179 - Auntie Val’s Ability Centre in Farm Buddies connects small Storrington is a jam and chutney groups and individuals with local making community interest farms so that they can visit weekly, company that aims to get people usually for a minimum of 12 weeks of all ages with disabilities and do tasks which will be tailored into work either at Auntie Val’s to individual needs. For more, go or within the wider business to: www.farmbuddies.org.uk. community by offering work experience, training and social Ferring Country Centre is a local integration. For more information charity that provides training and go to: www.auntievals.com. work experience for young people with learning difficulties to help Blatchington Court Trust them go on to do voluntary or paid provides a service to young work. For more information go to people under 30 who have visual www.ferringcountrycentre.org. impairments. They can assist with job searches, CV writing and JubyLee Bakes CIC is a interview practice. For more go community interest company to: www.blatchingtoncourt.org. that was created by a group of uk and click on ‘services’, then choose ‘employment support’ young people with special needs from the menu. producing ‘Special Bakes by Special People’. Their innovation The Butterfly Project, Horsham was recognised in 2016 when is a social enterprise that supports the team won the Young Start- adults with learning difficulties, Up Talent Gatwick Diamond autism and other disabilities to Competition, which was open to engage in work and community all entrepeneurs. activities so that they can develop their skills and build their confidence JubyLee Bakes is run for young and self esteem. For more people with a variety of learning information go to their Facebook disabilities, many of whom page: www.facebook.com/ also have autistic spectrum TheButterflyProjectHorsham conditions. The young people’s or call: 07400 818511. views and ideas are continually
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Employment and life skills incorporated into every aspect For more information, go to: of the business. They hand www.jubyleebakes.org.uk, or call make a variety of classic bakes the general manager, Ellen, on: and other treats and work to 01293 526509 or 07709 275278. strict food hygiene standards in five-star rated kitchens. They Impact Workability supports sell their goods at markets and people with physical or sensory other events in West Sussex, as impairments, acquired brain well as supplying Norwegian injuries and carers to find training, Airlines’ Gatwick Office, two town volunteering or paid work centre cafes, Collyer’s Sixth Form opportunities. It also supports College, Mencap Trust Company employers by working with them tea parties and a variety of other to identify their employment local functions. A donation is needs, so it can help them to given from most sales towards recruit the right people and other good causes. ensure they have the resources and understanding to support Young people with learning current and potential employees. disabilities and other special needs are welcome to join JubyLee Bakes Bespoke one-to-one and group as volunteers. JubyLee Bakes can support is available in order to provide work-based training in match people’s skills and abilities to baking and food hygiene. There is suitable jobs, courses and training also the chance to develop other opportunities. Employment skills including packaging goods, specialists work with people at a and selling bakes and handling pace that is comfortable to them money at events. and seek to find solutions to the barriers that they may need to Any young person who is overcome. Call: 01903 730044 interested in joining the team or email: workability@impact- must have a personal assistant initiatives.org.uk. (PA) or carer with them who is able to actively support them Southdown runs a specialist during baking and sales sessions. supported employment service
- 181 - for people aged 16 years agreed number of hours and days and over with mental health each week to enable their needs conditions to help them to find to be met. and retain paid work, undertake volunteering or to obtain life In West Sussex, Saspire operates skills and qualifications. For more, from SASBAH’s Worthing go to: www.southdown.org/ premises. It comprises a large mental-health-recovery/our- workspace and office, with fully employment-support. accessible facilities. For more information, please contact the Sussex Association for Spina SASBAH office on: 01825 873045, Bifida and Hydrocephalus or email: [email protected]. (SASBAH) runs a social enterprise called Saspire, which West Sussex County Council offers training and voluntary also runs career taster schemes work experience to support for the following: undergraduate people with physical and/or placements, graduate internships, learning disabilities including work placements apprenticeships those with spina bifida and/or and voluntary work. They are hydrocephalus. For some people particularly interested in helping this is a direct stepping stone to people who may face barriers employment, for those with more to employment due to their age substantial disabilities it offers or health conditions and those the opportunity for voluntary who are long-term unemployed. work, interacting with others in a You can find out more at: www. safe and secure environment. westsusex.gov.uk/careertasters.
Saspire has three principal Voluntary work elements: training (including personal development), direct ‘By doing voluntary work it gets me work experience, and personal out of the house and gives me more support plans geared to an confidence at being independent and individual’s development needs. doing stuff on my own.’ (Simon, 23) Volunteers commit to attend an
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Unpaid voluntary work can be a new friends, while at the same stepping stone into work. Young time working towards a nationally people can work voluntarily recognised award. Young people without it affecting their benefits with SEND are welcome but some and, even if it doesn’t lead to centres have specialist knowledge a job, it’s a way of meeting and experience in delivering DofE new people, gaining new skills for young people with additional and getting experience of the needs, so if you have questions working world. about accessibility or meeting your young person’s needs email: Some parents find volunteering [email protected] (local) opportunities for their young or find out more at: www.dofe.org people through their own (national). network of friends and family. Think creatively about where There are also volunteering their strengths and interests lie – opportunities available with it’s always worth asking around West Sussex County Council. in your social circle as you never To find out more, go to: www. know what might work out. westsussex.gov.uk/volunteering.
‘Joe loves trains and transport. We The National Citizenship Service found he could volunteer to look after is open to all 16 and 17 year olds the flower planters on some station – young people with SEND are platforms in the area and this means eligible up to 25 years of age. he gets to travel between them by The aim is to help young people train with his support worker.’ build their skills for work and life, take on new challenges and meet Young people can gain volunteering new friends. It runs in the spring, experience through the Duke summer and autumn. It includes of Edinburgh Award. It offers a short time away from home as all young people aged between well as a team project to help the 14 and 25 the opportunity to local community. To register ring help others, acquire new skills, 0800 197 8010 or register on their experience adventure and make website: www.ncsyes.co.uk.
- 183 - Skills development There are a number of self- advocacy groups running in West M8s is run by the youth Sussex, including: interventions team in Bognor and Horsham. They offer a person- Asperger’s Voice Self-Advocacy centred skills development Group is a community group run programme, which focuses on by and for adults with Asperger’s. the young person’s needs and Call: 07471 353062, email: developing skills for life and [email protected] or go supporting them to work towards to their Facebook page: a Youth Achievement Award. www.facebook.com/ AspergersVoice. Once they have achieved their goal, the young person will then Asperger’s Syndrome Self- be supported to move on to Advocacy (ASSA) is an other opportunities in their area independent self-advocacy group to socialise and develop their in Littlehampton for adults with skills. For more information, Asperger’s. The group meets on contact Maria Parton on the second Wednesday of the 0330 222 3166 or email: month and is supported by staff [email protected] from Impact Initiatives. For more (Bognor) or Gail Walker on information, call: 07471 353062 or 0330 222 3109, email: email: [email protected] [email protected]. People Come First is an Self-advocacy independent self-advocacy group in Horsham for adults Attending a self-advocacy group with learning disabilities, run by can be a way for young people adults with learning disabilities. with SEND to make their voices The group meets on the second heard and to develop their Tuesday of the month and is confidence. Both are key life supported by staff from Impact skills and will help your child to Initiatives. Call: 07920 234605 or maximise their independence. email: [email protected].
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SpeakAbout is an independent self-advocacy group in Worthing for adults with learning disabilities. The group meets on the fourth Thursday of the month and is supported by staff from Impact Initiatives. Call: 07741 241209 or email: [email protected].
Speak Up is an independent self- advocacy group in Burgess Hill for adults with learning disabilities. The group meets on the third Monday of the month and is supported by staff from Impact Initiatives. Call: 07776 072603 or email: [email protected]
Voice is an independent self- advocacy group in Bognor Regis for adults with learning disabilities. The group meets on the first Thursday of the month and is supported by staff from Impact Initiatives. Holds a coffee shop drop-in twice a month. Call: 07748 088427 or email: [email protected].
- 185 - 10 A place to live
‘He’s always done lots of things out of with the right people is extremely home and at college and he’s watched important to a person’s happiness all his brothers and sisters leave and and well-being. he wanted to leave home. I suppose it’s a natural thing…’ You can start discussing housing options when your child is still at Sometimes, it is difficult to school as part of their transition imagine your child not living with planning annual review meetings. you when they are older. You may be worried that no one else will ‘Letting go, that isn’t easy. I suppose be able to care for them and love that’s because I have massive love for them in the way that you do. Or, Tommy. I just wanted the right thing they may want to leave home for him. I did ask what would happen and you may feel you’re ready about him coming back home again for them to leave, but worry that and they said maybe he needed a bedding-in process for a few weeks there is no suitable support and and so on. I said I didn’t know if I provision for them. could do this, so I sort of wangled it so that Tommy comes home every This chapter covers what housing Sunday night.’ options are available for young disabled people in West Sussex. Where do people live? The experiences of parents and young people who have already Housing arrangements for made the move show that it’s disabled people have come a long important to think and start way since the 1960s, when people planning early for this major were housed in institutions that move. After all, having the right kept them apart from the rest of living space in the right location society. Disabled people spent
- 186 - many years lobbying to have the Housing in West Sussex right to live in the community like everyone else. This, plus changes In West Sussex, only 12.8 per in attitudes and government cent of households live in council policy have enabled thousands housing or housing association of people to move out of long properties. Average house prices stay hospitals, campuses and are high, which means affordable residential care. But according housing is hard to come by. to a Mencap report, ‘Housing for There are several different types people with a learning disability’, of accommodation options there’s still some way to go to for people with a disability. ensure everyone has free choice They might choose to live in their living arrangements and with their family; in private or access to support that entirely social rented housing; in owned meets their needs. accommodation; in residential care or specialist placements; You can find advice on housing or in adult placement schemes and supported living at what was called ‘Shared Lives’. Housing and Support (now called Learning Disability England). The growing number of disabled It has detailed information people means that more people and resources around housing will need the Local Authority options, rights and the law, to make housing arrangements good practice and policy at: for them so they can live as www.housingandsupport.org.uk. independently as possible. You can find out more about Learning Disability England at: ‘So eventually, Clare said that she www.learningdisabilityengland.org.uk. had found somewhere that would be suitable, but he would have to ‘I don’t think there was a terrific live with three others because they amount of choice. It was where he weren’t going to fund for one or two, had friends and it wasn’t too far away it had to be four. You know that and he could go to college and back.’ autistic children have huge problems with relationships and friendships.
- 187 - But Tommy [and] one of his When looking for housing for classmates … seemed to have a your young person, it’s really link to each other. They seemed to important that the arrangement communicate in their own language meets their physical and and have affection for one another. So support needs as well as their they are living together and the other social needs. Every person has two came in a bit later.’ individual needs, which may range from step-free access or an Planning for the future extra room for a carer, to being ‘There was a fair bit of paperwork near informal support networks, and people you had to see from that such as their family and friends. organisation. They had to know every detail, obviously, about your young Eligibility criteria for support person.’ from adult social care and funding for accommodation Because disabled young people are likely to depend on formal As we explained in Chapter 7, and informal support, planning once your child is 18 years old, for the future is crucial. the social care support they need is provided through adult social Generally speaking, disabled care. Adult social care workers young people, their families and carry out needs assessments to local authorities should take decide what the young person’s part in detailed planning and support needs are, whether assessments before any change the young person is eligible for is made to living arrangements. support and if they are, what This is to make sure that the new support social care can offer you accommodation meets the needs and your young person. In West of the young person. Planning Sussex enquiries are initially is also a way of involving your directed through the Adults’ young person in decisions about CarePoint on: 01243 642121, where they want to live and who or email: they want to live with. [email protected].
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Each of the district/borough until some time in their late teens councils in West Sussex have their or early twenties, when they own Housing Options Officers with begin the journey to independent whom you will be able to discuss living. They may move into shared your young person’s situation. You flats or student accommodation will be offered advice on what you before moving on to living alone, could do yourselves or assistance with friends or partners. However, to move into suitable housing. the same is not always true for Note this service is only available young people with disabilities and to people who are over 16. other support needs.
How the council commissions Official statistics show that the (buys) services majority of adults with learning disabilities live with their families West Sussex’s housing and or in residential care. Councils are social care providers have keen to support the young person been ‘approved’ through an to stay living in their family accreditation process. They are home, for as long as the family also monitored by the council’s are able to sustain this and meet contracts team. Commissioners the young person’s needs. They (people whose job it is to buy these can offer help to make this work. services) work with providers to Some support can be provided through ‘outreach’ support, day ensure the services are appropriate activities, short breaks/respite and value for money. or access to social clubs. This includes services specialising Types of housing for in working with young people, young people autism, complex health needs and other needs. Continuing to live at home with their family WSCC Adult and Children’s services can organise short breaks The typical experience for young for adults with more complex people is to live with their families needs. But be warned that this
- 189 - provision is for all ages so your Supported living or supported young person may not always be housing, as it’s sometimes with people their own age. called, generally means living in accommodation where there If your young person has a are staff on site. There are two Personal Budget, it can be used main forms of supported living: a to employ Personal Assistants ‘group’ home, where people have (PAs) or to meet their needs in their own room but share other other ways. We’d suggest that facilities; or a self-contained flat it’s really important to think or studio. For both forms, support about what’s best for your son or may vary from 24-hour staffing to daughter in the long-term – don’t just a few hours a day. wait until there is a crisis when they may have to move out of the ‘They have a whole package of lovely family home. staff, all very young and motivated. Three guys and four girls on a rota Support at home costs around system. One stays overnight, possibly £15.00 per hour but provider sometimes two. There is always one overnight and three in the house at all prices vary. The money to pay for times for the four of them.’ this can come from the package of support agreed by adult social In supported living or housing the care and can be arranged by the young person can have a tenancy council or managed by the young agreement, which gives them more person or their family as a Direct housing rights. They can claim Payment. For more about Direct housing benefit and keep most Payments, see page 143. of their benefits such as Personal Independence Payment (PIP). Supported Living or Housing Supported housing focuses ‘The best thing is that they get to on helping the young person do what they want to do with their friends. Getting to do things that old to develop their life skills and people like me don’t want to do!’ independence, as well as learning to share the responsibility for
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A place to live cooking, cleaning and shopping. Choosing the right supported The positive side of this form of living scheme accommodation is that the young person will have company as well ‘They are trying to expand on their as the security of a service and independence skills. They all have staff team. However, like all young a lovely bedroom with double beds, people, it’s important to remember they are very lucky, they have a they can be friends one moment lovely home to live in and Clare [the Transition Worker] did a very good job and fall out the next and staff may at finding that particular property.’ leave, which can be disruptive. Supported living is provided by a ‘Well they are teenagers and they do range of providers in West Sussex. get up to trouble sometimes and they have arguments as well. I’ve had quite Despite this choice, it can still be a few times when I have worried... difficult finding the right place but staff have said don’t worry; they for your young person when they are friends but they do have ups and need it. Once again, good early downs.’ planning is the key to identifying the right service for your child. ‘Now there is someone staying overnight who knows them. That’s Details of supported living the most important part. If someone accommodation in West Sussex doesn’t know them they don’t and further afield can be found on know how to deal with them in an the Care Choices website at emergency.’ www.carechoices.co.uk. You just Who can use supported living put in your postcode and the type schemes? of care you are looking for and you can browse the results. To access supported living/ housing schemes, a young person Supported living is registered as will have to be assessed by Adult ‘Services in your home’ with the social care to see if they are Care Quality Commission and so eligible for the service. is subject to a different inspection regime to residential care. You
- 191 - can look up their latest checks • Grace Eyre offers information on local supported living services and support to people with on the Care Quality Commission learning disabilities, including website at www.cqc.org.uk. supporting people to find a suitable home as well as a ‘You can pop in at any time, it’s not supported living scheme. For like school, and it’s like an extension more information go to: of your home. That’s where they live.’ www.grace-eyre.org. Where can I find out more? • Mencap has detailed information and advice on The following list is a selection of supported living. See: organisations that have further www.mencap.org.uk/advice- information about supported and-support/housing. living schemes, or run their own • Outreach 3 Way offers people schemes. with learning disabilities or autism supported living • Aldingbourne Trust – offers services. For more, go to: supported living, living in the www.dimensions-uk.org/ community and transitional about/outreach-3-way. support to help people develop • Scope has a guide to living the skills they need to live on independently, which you can their own. For more, go to access at: www.scope.org.uk/ www.aldingbournetrust.co.uk/ support/disabled-people/ care-and-support/housing. independent-living-guide. • Chailey Heritage Foundation’s • South Down provides Futures Accommodation is for supported living for people young adults aged up to 25 across West Sussex who have with complex needs and offers a range of disabilities: a stepping stone to young www.southdown.org/ people moving into adult life. learning-disability-support. For more information, go to: • West Sussex Connect to www.chf.org.uk/futures- Support has a searchable accommodation.html. database of organisations that
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offer a variety of residential ‘I decided to move home because I options. Go to: www. was getting to the age where I wanted westsussexconnecttosupport. to move out and my social worker org and click on ‘Services’ to looked at loads of places, then she search. found this person from Shared Lives. I was OK when I moved in because I’d stayed there three nights a week Shared Lives anyway, so it was sort of like I was there already.’ (Becky, 18) ‘The social worker suggested that Becky go and live with the Shared Who can use Shared Lives Lives carer full-time, but not permanently, while she investigated services? possibilities for longer term supported living. So the whole idea has been To access Shared Lives, a young that Becky just lives there short term.’ person needs to be assessed by Adult social care to see whether Shared Lives is when the person they are eligible for this scheme, lives with another family in their so if your child has a social worker, home with the support of that talk to them about this option. family. Shared Lives is like an adult version of having a foster ‘I have a lot less responsibility, which family. The schemes recruit, is actually one of the best things… so assess and support carers who the involvement that I do have with Becky is on a more personal level, just offer accommodation or care and me and Becky, rather than dealing support in their family home. with all the bureaucracy and the form- filling and phone calls and meetings The Shared Lives scheme can and all of that. I don’t miss that.’ be a good stepping stone for a person with a learning disability A financial assessment will be or autism moving towards living carried out by the Local Authority more independently. Some young in order to see if the person needs people who still live at home with to make a financial contribution. their parents might live with a To find out more, go to: Shared Lives carer part-time, for www.westsussex.gov.uk/sharedlives example a few days a week.
- 193 - ‘The best thing for me is that Becky The exceptions to this are some is happy where she is. If Becky was residential care homes for living independently, but she was younger people with complex unhappy, I would find that very physical/health needs or those difficult. But because it’s what she with complex or challenging wants, it’s what she decided and it’s behaviours. going well, that’s the best thing.’
Residential care Residential care homes vary in size from three or four to ten Residential care offers specialist or 12 rooms in a house. Most services with high levels of are ordinary homes on ordinary staffing 24 hours a day. It’s for streets. You have to find the right people who need high levels of vacancy, and compatibility with direct support with personal care other residents can be an issue. and daily living. If a young person is quite independent in these areas In a residential home the young then residential care is probably person will not have a tenancy, not the right option for them. they will have a licence, which means they have fewer rights. Residential care almost always It also means that the landlord involves living with other disabled can has access to their room and people who have been placed can change their room. there. So there is less choice of the people the young person Who can get residential care? will live with or the people who will support them. In the past, To access residential services, this was often the only housing young people will need to be option for people with learning assessed. If the young person disabilities who, for whatever meets the eligibility criteria and reason, could no longer live moves into residential care they in their family home. For this get a full package of support and reason, many of these homes care – which means all of their tend to cater for older people accommodation, support and rather than young people. care costs are met by the council.
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This also means, however, to the rules of the tenancy, this that the person has a very low could be a home for life. personal income as nearly all their money goes towards their Social housing has cheaper rents, support and care costs. which can usually be paid in full by housing benefit, depending Choosing residential care on the young person’s income. The landlord – the council You can find details of local care or the housing association is homes in West Sussex and further responsible for most repairs and afield on the Care Choices website maintenance. at www.carechoices.co.uk. Unfortunately, there is high Care homes have to be demand for social housing in West registered, so are subject to Sussex and it can sometimes take a inspection by the Care Quality long time bidding before there is an Commission (CQC). You can see offer of a property. Also remember details and recent inspection that all of the young person’s reports of care homes on the support needs will need to be above website or on the Care arranged before they move in. Quality Commission’s website www.cqc.org.uk. In some areas of West Sussex, to register for social housing Social housing you will need to speak to your district council, most of whom Social housing is property that you have application forms online. rent from the council or a housing Eligibility rules for each housing association. People living in social register vary. You can find contact housing have a secure or assured details for your district or borough tenancy which means they can council in the directories, on page only be evicted for breaking 218. Alternatively, go to www. certain rules and only if a judge westsussex.gov.uk and search for agrees. So if a young person sticks ‘affordable rented housing’.
- 195 - If you are located in Adur and A word about accessible housing Worthing, Chichester, or Mid Sussex, to apply for social housing West Sussex County Council has locally you need to register with a register of all their adapted and the choice-based letting scheme wheelchair accessible homes. All Sussex Homemove. You can those applying for the accessible download an application form housing register are assessed for from the council’s website. Go to mobility needs and coded 1, 2, 3 www.westsussex.gov.uk depending on the severity of the and look under Housing, or go to need. All properties available to www.homemove.org.uk. let are then advertised as being suitable for particular codes with You can also visit any of the local the priority going to that group. housing offices where staff can You can also look for accessible help you with form-filling or any housing on the Accessible Property Register: queries you may have. You may www.accessible-property.org.uk. need to complete a medical self- assessment form for your young Home ownership schemes person with information about any disabilities, impairments, HOLD – Home Ownership medical conditions or mental for People with Long-term health needs they may have. Disabilities is a Government- backed scheme that helps For young people with mobility disabled people to buy a shared needs, there is a separate mobility ownership home and live self-assessment form. Ask the independently by buying an initial young person’s GP or any other share in the house that they medical workers for supporting can afford. If none of the shared information. If the young person ownership homes available can has a social worker, you could ask meet the person’s needs, the them for a supporting letter. disabled person may qualify to buy a home on the open market.
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More information is available at: the landlord may decide to give www.helptobuyese.org.uk/help- another fixed term tenancy, to-buy/hold or call 03333 214044. or decide not to but allow the tenancy to continue on what The private rental sector is called a statutory periodic tenancy or may decide to end the This means renting a property tenancy. If the landlord doesn’t owned by a private landlord. For want to extend the tenancy they some people, it can be a good must usually give two months’ option for finding somewhere notice and may have to seek to live as it can be difficult to get possession through the courts. social housing (owned by the The landlord is responsible for council or housing associations) in most repairs and maintenance. West Sussex. Housing benefit in private There are lots of different types accommodation of properties available to rent privately. This is one of the Rents are higher in the private fastest ways to find somewhere sector than in social housing. to live and there is lots of choice Some rents may be higher than about where you live. You can the amount that housing benefit look for properties in local letting will cover. Some private landlords agents, as well as for ads in will not take tenants who are shops, local papers, the Friday on housing benefit. Contact the Ad or on the internet. housing benefit department to work out how much housing Tenancies benefit the young person may be able to get. Private sector landlords normally give their tenants a six or twelve Moving in costs month fixed term Assured Shorthold Tenancy to begin You usually need one month’s with. After the fixed term is up, deposit and one month’s rent in
- 197 - advance before you can move in This can include providing and if you go through an agency equipment to make daily tasks you may also have to pay agency easier, adapting your home to fees. Remember, if your young improve access or help with person needs support to live bathing facilities. Adaptations independently you will need to might include providing ramped arrange this before they move in. access, adding handrails, widening doors, raising electrical At the start of the tenancy, when sockets, replacing a bath with a your young person has paid level access shower or installing any fees and the initial deposit, special equipment for people the landlord must protect the with hearing or visual difficulties. tenancy deposit in a government approved scheme. The deposit These adaptations may be funded should be returned at the end or part-funded by the council of the tenancy, although the depending on your circumstances landlord can make reasonable through a Disabled Facilities deductions from the tenancy Grant. For further information deposit if the tenant has caused contact the Adults’ CarePoint damage or hasn’t paid the rent. on 01243 642121, or email: You can find out more about [email protected] tenancies and your young person’s and ask for an assessment, which rights as a private tenant at will be done by an Occupational https://england.shelter.org.uk. Therapist.
Getting adaptations to Tips on choosing somewhere appropriate housing ‘If everyone is quietly in their rooms I The council can help adapt a would be uncomfortable. I would look property whether you own it, for staff that are really understanding rent privately, or are a council or and who join in with them.’ housing association tenant.
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• Listen to what your young ‘Social workers... have a massive person wants. caseload and my impression is that if • Be assertive with social things are going fine with one client services – if you’re not happy they just leave well alone because with what’s been offered, they’re dealing with a crisis with someone else, so you’ve got to be pushy push for alternatives. for what you think your child needs.’ • When you visit a possible placement, make sure people ‘They are all learning because they look relaxed and happy with don’t know that person at all. So what the staff. I did was I got myself some cards and I • Try and find a nice short break put: these are the foods he likes; these placement first that you are the activities that he likes. I put feel happy with, be it one or different things on different cards and two nights a week, so your gave them to the carers to give them child can get used to it. If a some guidelines. And also what might placement is available you upset him, anything to do with that.’ may be able to build up the ‘Support [your young person] by amount of time your young helping them do washing up and person spends there. washing their clothes and putting • It’s important to have good clothes in the washing machine and communication with all the helping them put the machine on … people who are looking after Teach them to do it and then they can your young person. do it the next time.’ (Becky, 18) • 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.
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Travelling independently is an one month and one year. To get important part of growing up, the discount you need to have but for some young people a Sussex Student Card – local this will always be difficult railway stations, schools and without support. This chapter colleges have application forms looks at ways of making travel for this. For more information and easier and includes information to download the application form about special allowances and go to: www.westsussex.gov.uk/ concessions available to disabled studentcard. young people. Once you have the card, you can Travelling to college apply for a season ticket at: www.southernrailway.com/ tickets/discounts-and-railcards/ Help for all young people further-education-season-tickets.
Students aged 16 to 19 years who National Rail also provides a Young are in full-time further education Person’s Railcard for 16 to 25 year can get a third off their rail travel olds, which entitles the cardholder to and from college with a Sussex to a third off rail fares. It costs £30 Student Card. a year or £70 for three years. Under the same scheme, mature students The discount is available to full- can also apply for an annual time students aged 16-19 whose railcard, as long as they can provide home address is in West Sussex, evidence that they are in full-time Brighton and Hove, or East education. For more information, Sussex. It applies to most local call 0345 3000 250, email: train journeys (not to London) [email protected] and season tickets of between or visit www.16-25railcard.co.uk.
- 200 - Compass Travel offers 25 per cent Stagecoach offers discounted off adult bus fares to students Termrider and Unirider tickets aged 16 to 19 who are in full-time for school and college students, education: www.compass-travel. plus a weekly student rate, co.uk/concessionary-fares. called Megarider Gold. See: www.stagecoachbus.com/tickets/ Metrobus offers 25 per cent off unirider. adult fares for students over 16 in full-time education. To get the Unizone is a season ticket scheme discount, students must register giving unlimited travel to college for a free Student key card, and university students within which can then be topped up specific Unizone areas. It is open online or at the Metrobus travel to students studying at any of shop in Crawley. See: the universities in Sussex, as well www.metrobus.co.uk/student- as Plumpton College, and young people at college who have a eligibility-and-id. valid NUS card. For more details go to www.southernrailway.com National Express offers a third off and click on ‘Tickets and fares’. fares to full-time students aged 16 to 26 years through its Young Help related to disability or SEN Person’s Coach Card scheme. See: www.nationalexpress.com/ If you think your child will need en/offers/coachcards/young- support getting to and from person. They also offer a separate college, flag it up with the Senior discount scheme for people with Planning Coordinator and during disabilities, see page 206. their annual review at school.
Plusbus is a scheme where West Sussex County Council has travellers can add unlimited bus or a transport policy statement for tram travel around the town or city students in further education, served by rail, so you can use the which is available on their bus to get to or from the station, website. Transport may be for example. To find out more go available if your young person to: www.plusbus.info. meets their eligibility criteria.
- 201 - Parents will be asked to make a your time if you don’t have to contribution towards transport be your child’s chaperone or taxi costs unless the family is on a low service. income. For more information visit www.westsussex.gov.uk/ Ask your child’s school or college schooltransport and click on about travel training, what it will ‘Post-16 and college transport for involve and how you can support students with SEND’. your child to learn these life skills. Giving this a try should not mean Schools and colleges also have a your child’s existing transport 16-19 Bursary Fund for students arrangements will be cancelled. from low income families who may not meet the eligibility ‘My son’s self-confidence and self- criteria for help with transport. esteem have blossomed. In his eyes, the world has become accessible and Independent travel training he feels that he fits in with his peers, which is so important to a teenager.’ ‘She looks like any other teenager... but she’s leaving school with a reading Some short breaks or 1:1 age of less than nine years. She still buddying schemes offer trips can’t do independent travel on the out in the community for young bus, we have to practise journeys.’ people. As part of this, there may be the opportunity for Some schools and colleges offer young people to travel on public independent travel training to transport, which can be a good help young people to get about time to practice journey planning on their own. Parents may worry and build independence. about a child’s vulnerability, but there are many advantages in the Using technology to help long run if your child can learn to travel independently – including If your young person has a mobile opportunities to participate phone, these can be used to in social and leisure activities, encourage independence and training, further education and also to provide parent carers with employment. It may also free up reassurance.
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Of course, the easiest way to do Footprints is another tracking this is for your young person to app, with the added benefit of check in with a text every now ‘geofences’. This allows you to set and then – to let you know when boundaries in which your child they leave and arrive somwhere. can move freely, but if they cross However, if you feel you want the geofence, a notification will more reassurance, a number of go to your phone to let you know. location apps are available – these This could be useful to allow offer the option for tracking in parent carers to gradually expand real time and may be of particular the area for independent travel. benefit during the first few journeys your young person makes There is also an array of wearable independently. For example: tech to suit all ages and abilities including smart watches with Life360 Family is a free app in-built GPS trackers, some of which can also receive calls available for iPhone and Android from and make calls to pre- that allows you to choose two programmed numbers. locations, such as ‘home’ and ‘school’. When your child sets off There are pocket trackers, which for school, the app checks them can be slipped in a bag or jacket. in and sends you a text to let Some have in-built panic buttons you know they’ve arrived safely. which can be programmed to call There is also a ‘panic’ option, your mobile phone. There are also which sends texts and emails to GPS trackers which can be clipped carers showing your child’s precise to clothing or slipped in shoes. location. The paid option allows you to choose additional locations. Journey planning
Find My Friends is a similar app, Teaching young people to plan which allows you to broadcast their journeys is an important your location to friends. There’s part of travel training, and there an Android version and Apple also are lots of local and national do a similar version for iOS. resources that can help.
- 203 - West Sussex County Council has disabled passengers and people a dedicated cycle route planner, with reduced mobility. National which is available as a free app for rail also has an app for Windows, most smart phones. You can visit Apple and Android phones. www.westsussex.gov.uk/cycling for further information. For coach journeys, National Express has an Assisted Travel For both national and local travel service. Call: 0871 781 8181,. It information on journeys by bus, also has an app for smartphones. coach, train, foot or bike, plus useful contact details and links Online resources like Google maps to help you plan your route you or sites like www.streetmap.co.uk can also check: allow you to plan journeys from www.westsussex.cdmf.info. one point to another and provide To plan journeys and to compare you with text and map details travel options, you can also go you can print out. Your young to www.traveline.info. person may also benefit from downloading one of the many If you’re planning to travel in travel apps that are available for and around London, Transport smart phones.Many provide live for London (TfL) has a journey travel information, which can be planner on its website at really helpful when services are www.tfl.gov.uk as well as cancelled or delayed. information on assisted travel, which includes some useful ‘how Locally, the Aldingbourne Trust to’ videos. can help disabled people to plan travel, apply for discount schemes For local and national rail travel, and book tickets. Go to contact National Rail Enquiries www.aldingbournetrust.co.uk/ or visit their website at www. care-and-support/advice-guidance nationalrail.co.uk or call 03457 and click the ‘travel’ tab to find 48 49 50. National Rail Enquiries out more. provides travel information for
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Bus travel • They are blind or partially- sighted. Local bus travel • They are profoundly or severely deaf. More information for each of the • They are without speech. local bus companies operating • They have a learning disability. in West Sussex can be found at: • They applied for a driving www.westsussex.gov.uk/buses, licence they would have it go to ‘Bus operators and fares’. refused on the grounds of a This also includes contact medical condition. information for each company. Passes are issued by West Disabled person’s bus pass Sussex County Council. For more information and an Anyone aged five or over with a application form go to their ‘physical or mental impairment’ website www.westsussex.gov.uk may be eligible for a Disabled and search for ‘Free Disabled Person’s bus pass, which offers Person’s Bus Pass’. Alternatively free bus travel 24/7 for West Sussex you can call 0330 222 6222 or email residents whose journeys start or [email protected]. finish in the county. There may be time restrictions if the pass is If young people do not wish to used in other areas. Young people have the bus pass, WSCC offers a who are permanent residents of free Disabled Person’s Railcard, West Sussex will be eligible if: see the section on train travel for more information. • They have a disability or have suffered an injury, which has If your young person lives in Mid- a substantial and long-term Sussex, is over 18 and eligible for adverse effect on their ability the bus pass but unable to use it to walk. because of their disability, they • They do not have arms, or may be eligible for taxi vouchers. have long-term loss of the use See the section below on taxi of both arms. travel.
- 205 - Helping Hand Scheme go to www.nationalexpress.com/ en/offers/coachcards or call their This is a card scheme, which contact centre on 0871 781 8181. is being supported by several If your young person is a bus companies in West Sussex wheelchair user, they recommend including: Big Lemon; Compass that you book assistance at least Travel; Metro bus; Southdown 36 hours before you travel by PSV; Stagecoach; as well as calling 0371 781 8181. Brighton and Hove Buses in East Sussex. It is a simple card that the Community Transport holder can hand to the driver to give them extra information such There are various Community as ‘Can you call out the correct Transport Service providers stop’ or ‘Needs priority seating’. operating across West Sussex that can help people who find it difficult to use public transport. It does not disclose the person’s They run regular services for condition to the driver, but this people to go shopping. Some can be added to a ‘bespoke’ card, buses have a passenger lift or a if preferred. To apply go to: low-level floor, so they’re ideal www.metrobus.co.uk/helping- for people who can’t manage hand-scheme, or go to steps or who use a wheelchair. www.westsussex.gov.uk and Drivers are trained to help search for ‘Helping Hand scheme’. passengers on or off the bus Alternatively, you can find out and to make sure the journey is more by calling 01273 886200. smooth and comfortable. You can find out more about the National Express Disabled services on offer in your area by Coachcard going to www.westsussex.gov.uk/ communitytransport. This card offers a third off travel on National Express coaches Compass Card Offers throughout the UK. There is a charge for the card and it is valid If your young person has a for a year. For more information Compass Card, see page 90
- 206 - Travel and getting about for details, it’s worth checking and an adult companion a third the Compass website for off most fares across the UK. travel discounts. A number are For more information, contact available, including Brighton the Disabled Person’s Railcard and Hove bus company, which office on 0345 605 0525, email offers discounts for Compass [email protected], card holders over 18 who are not or download an application form at in full-time education and Big www.disabledpersons-railcard.co.uk. Lemon, which offers discounts on a number of Brighton & Hove The Disabled Person’s Railcard routes for West Sussex Compass can also be set on an Oyster card, Card holders. For more, go to: so that a young person gets a www.compasscard.org.uk. third off fares on the London Underground. Holders can also get National Train travel a third off an Off-Peak Travelcard for one adult travelling with them. The National Rail Enquiries website at www.nationalrail.co.uk There is usually a charge for provides information for disabled a Disabled Person’s Railcard. passengers about accessibility, However, if a young person does train operating companies and the Disabled Person’s Railcard, not wish to apply for the Disabled as well as accessibility maps Person’s Bus Pass, see page 205, that show which stations have West Sussex County Council offers lift access to platforms and a free one year railcard instead. information on staffing levels. You can telephone National Rail Southern Rail also offers a free Enquiries on: 03457 484950. Travel Support Card, designed to help anyone who finds it tricky Your young person may qualify to ask for help when travelling. for the Disabled Person’s Railcard The card can include details if they have a disability that about your journey, what you makes travelling by train difficult. might need help with and who to The card offers the young person contact in an emergency.
- 207 - To find out more, go to: Taxi travel www.southernrailway.com/travel- information/travel-help/assisted- Taxi companies provide travel/support-whilst-travelling. wheelchair-accessible cabs, but there are a limited number of Access and assistance with cabs available, so you may have rail travel to wait longer. It’s best to book them in advance. If you’re travelling by train you can book special assistance so In Mid Sussex, if a young person that rail staff will help you during is over 18 and qualifies for a your journey. The train company Disabled Person’s Bus Pass but can organise for someone to: cannot use buses because of their needs, they may be eligible for • meet you at the entrance taxi vouchers instead of the pass. or meeting point and accompany you to your train To find out more, go to • provide a ramp on and off www.midsussex.gov.uk/travel your train if you need one and click on ‘Taxi Vouchers’, • meet you from your train and call 01444 477450 or email take you to your next train or [email protected]. the exit • carry your bag Car travel
You can book help at short notice Free vehicle tax – although some companies ask for up to 24 hours’ notice – by Young people are exempt from calling: 0800 022 3720, or by paying vehicle tax if they: filling in the online form at: www. disabledpersons-railcard.co.uk/ • Receive the higher rate using-your-railcard/passenger- mobility component of DLA assist. You can also book in person or the enhanced rate mobility at any staffed train station. component of Personal Independence Payment (PIP).
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• Have a car that is only used of DLA, or eight points or more by them or for them. The under the ‘moving around’ section car could be owned either of the mobility component of PIP, by the young person, or by they will be entitled to a ‘Blue their parent or carer. The Badge’. A person who is severely vehicle must be registered sight-impaired will also meet the in the disabled person’s required criteria. It is possible name, or their nominated to get a Blue Badge if you driver’s name (this may be don’t claim DLA/PIP but ‘have you as their parent carer). The a permanent and substantial vehicle must only be used for disability which means you are the disabled young person’s unable to walk; or you have very needs. It cannot be used by considerable difficulty in walking.’ the nominated driver for their In this case a young person own personal use. may need to attend a mobility • To apply, you must get a assessment clinic. There is a fee Certificate of Entitlement to for issuing the badge. A booklet is show that your young person issued with every Blue Badge to receives PIP or DLA. Call: explain how to use it properly. 0800 121 4433 (PIP) or 0800 121 4600 (DLA). You If a young person has a Blue Badge, can then take the certificate to your local Post Office, they or the person driving them along with the vehicle’s V5 need to stick to the rules about its and a valid MOT certificate. use. For example, if they display For more information go to: the badge the wrong way round, or www.gov.uk/government/ with the expiry date hidden, they publications/ins216-how-to- can get a parking ticket. In West apply-for-free-disabled-tax. Sussex the scheme is administered by the County Council. Call: Blue Badge scheme 01243 777653 or apply online at: www.westsussex.gov.uk/ If your young person gets the bluebadge. higher rate mobility component
- 209 - Motability Some disabled people have found that, under PIP’s tougher rules for Motability is a scheme which assessing problems with walking, means some of the money although they were eligible for from the mobility component Motability under DLA they are of Disability Living Allowance not when they are reassessed for (DLA) or Personal Independence PIP. If this happens, the person’s Payment (PIP) can be used Motability vehicle has to be to lease a car. If your child returned. To help people in this receives the higher rate mobility situation, Motability are giving component of DLA or the support and advice in the form of enhanced rate of mobility for a ‘transitional support package’. Personal Independence Payment There is more information on their (PIP) and it has at least a year to website at www.motability.co.uk run, you or the young person or you can call 0300 456 4566. (if they are 16 and over) can use the mobility part of the Learning to drive allowance to lease a car, scooter or powered wheelchair. Young people can begin to learn to drive at 17, unless they receive Motability may be able to offer the higher mobility component of extra support to drivers aged 16 DLA or the standard or enhanced to 24 (whether the young person mobility component of PIP, in or a named driver) through Pass which case they can start learning Plus. This is a free six-hour course when they are 16. provided by the AA, specifically designed to help young drivers Learning to drive is expensive. to drive more safely. Successfully The Family Fund offers a grant completing the course in addition to help eligible young people to passing the driving test can aged 16 and 17 take the first steps reduce the insurance excess for in learning how to drive. Their young drivers. Contact Motability Driving Ambitions grant supports to find out more. the young person to get started
- 210 - Travel and getting about by funding a combination of: a can also provide information and provisional licence; theory test; advice on getting a car adapted learning materials, such as books for a young person’s needs. For or DVDs; and a first taster lesson. more information, go to: This is only available for an eligible www.drivingmobility.org.uk. young person who has not yet had any driving lessons. For more A number of organisations offer information call 01904 550055 or driving experiences for under 17s. go to www.familyfund.org.uk. Admiral’s Young Driver scheme offers half-hour lessons for The Family Fund cannot provide children aged five to 17, which can support for ongoing driving be a great introduction to driving lessons. If your young person in a safe environment. They are is aged between 16 and 24 and fully inclusive and experienced a Motability customer already, at teaching young people with Motability may be able to help with disabilities and also offer lessons the cost of driving lessons. Contact in adapated cars with hand their Grants team to discuss this. controls for wheelchair users. For more, go to: www.youngdriver.eu. There are several Independent Mobility Centres around the The Theory Test country that provide advice about learning to drive. The nearest The driving test is made up of a centres locally are in Worthing, theory and a practical section. Leatherhead and Carshalton. Theory tests are usually held at Staff can give advice and provide test centres, which are generally assessments to determine the wheelchair accessible and offer support needed to help a person specialist facilities for disabled to drive. The centre also has a list people. If your local centre isn’t of driving instructors who teach accessible to your child, they using specially adapted cars, can take the test at home or at a or have experience of teaching different centre. people with disabilities. They
- 211 - There are special arrangements Access and mobility for people who have difficulties with written language or working Out of town with computers when taking the theory test. It usually takes around The Rough Guide to Accessible 40 minutes to complete the Britain is a good place to start written test, but disabled people looking at access across the UK. can apply for additional time by See their website, completing the ‘special needs’ www.accessibleguide.co.uk. section on the application form. The website www.disabledgo. The Practical Test com, is also useful and covers the whole of the UK and Ireland. No matter how serious a young person’s disability might be, they London can seem a challenging will take the same driving test destination for disabled as everyone else. When booking travellers, especially as many the practical test, young people underground stations are should let the Driving Standards unsuitable for disabled or wheelchair using passengers Agency (DSA) know about their and there are no porters to help disability because they may be with luggage. The Transport entitled to extra time for the for London (TfL) website offers test. Call: 0300 200 1122 or email: thorough information about [email protected]. transport accessibility. Go to the section called ‘Getting Around’. If your child has an autistic They also publish a free guide spectrum condition, the National called ‘Getting around London: Autistic Society has information your guide to accessibility’ which about learning to drive, as well as gives details of step-free stations, links to other resources to help lifts, toilets and other useful you. To find out more go to: information when travelling on www.autism.org.uk/driving. the tube, buses and other forms of transport in the capital.
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Shopmobility Air travel
This scheme operates in many city If you are flying with a person centres and shopping centres and with SEND, it does require means the disabled person can some extra planning before you borrow a wheelchair or scooter. go, especially if your child is a Some schemes also offer an escort wheelchair user or has reduced to do the shopping. It’s a popular mobility, as it essential to scheme, so book early. You need request special assistance before to register before the first time you you travel. use it and there is a small charge for hire. Towns in West Sussex that run a shopmobility scheme include: To find out what assistance is available, it’s best to check on the • Bognor tel: 01243 830077, or airport’s website well in advance www.bognorshopmobility.co.uk. of travelling and to ensure it has • Chichester tel: 07932 802778, been booked via your airline or or go to: www.cfirst.org.uk/ travel agent when you book your transport/individuals/ tickets. Special assistance must shopmobility. be requested at least 48 hours • Horsham tel: 01403 249015 or prior to your journey. go to: www.horsham.gov.uk and search for ‘shopmobility’. Gatwick: if you require an eagle • Littlehampton tel: hoist to transfer your child 01903 733004, or go to: or young person from their www.shopmob1.plus.com. wheelchair to their plane seat , this • Worthing tel:01903 820980 should be booked at least 24 hours or go to: before you travel by emailing: www.worthingtowncentre.co.uk and search for ‘shopmobility’. [email protected].
To find out about other schemes Both terminals at Gatwick also across the country, see the have Changing Places accessible national Shopmobility website at toilets. These are located after www.nfsuk.org or call 01933 229644. security for passengers arriving
- 213 - and departing from the airport. wearer as someone who needs An additional Changing Places additional support from staff. facility located before security is The lanyards are available from also being planned for the South Assistance Reception areas at Terminal.For more information, the airport. You can also email to: www.gatwickairport.com. the team at: HiddenDisability@ Choose ‘passenger services’ and gatwickairport.com before click on ‘special assistance’. you travel. For more, go to the website: goo.gl/14J3FW. Heathrow airport also provides special assistance, which must Gatwick airport’s website also be requested 48 hours prior to has a link to a downloadable travelling. For more, go to: booklet, Our Autism-friendly www.heathrow.com/airport- visual guide to Travelling guide/special-assistance. At through Gatwick Airport, with the airport, you will find special information,advice and photos assistance host areas in terminals of different parts of the airport. 2 to 5. and Changing Places Go to: www.gatwickairport.com. toilets located after security Choose ‘passenger services’, in terminals 2, 3, and 5 and in then ‘special assistance’ and click arrivals, terminal 4. on ‘hidden disabilities’.
Hidden Disability Assistance Hidden disabilities lanyards are Programme also available at Heathrow, go to: goo.gl/FmC8CY, Stansted: Gatwick runs a ‘Hidden Disability www.stanstedairport.com/ Assistance Programme’ which is help/special-assistance/hidden- available to anyone with autism disabilities and various regional or other hidden disabilities airports such as Birmingham who needs extra support and and Luton. To find out more, understanding at the airport. search for ‘hidden disability It provides special lanyards, which lanyard’ online. are a discreet way of flagging the
- 214 - Reaching Families * Jobcentre Plus * Anti-Bullying Alliance * Ambitious About Autism * Apprenticeships in West Sussex * Family Information Service * Advocacy Services * Chichester Careline * Amaze * Citizens Advice Bureau * Healthwatch * Independent Lives * MIND * The National Autistic Society * BIBIC * Outreach 3Way * Down’s Syndrome Association * Patient Advice and Liaison Service * Your Space * Sensory Support Team * Independent Complaints Advocacy Service * SASBAH * Worthing District Scope * Carers Support West Sussex * NHS England * SOS SEN * Adults’ Care Point * West Sussex County Council * Action for Deafness * Disability Equipment Service * Cerebra * Community Children’s Nursing Team * Carers UK * Look Sussex * Mid-Sussex Mencap * Outset Youth Action * Chichester Counselling Service * Aspens * Action Against Bullying Support Line * Relate * Signposts * Shared Lives Scheme * Worthing District Scope * AFASIC * Changing Faces * Diabetes UK * Fragile X Society * Changing Places * Disabled Person’s Railcard * IPSEA * Network 81 * Student Finance England * Blue Badge Scheme * Disabled Go * Motability * FindItOut Centres * Pass Plus * Shopmobility * Sussex Student Card * Taxi vouchers * Tourism for All * Directories
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Essential contacts
Action Against Bullying Support Disability Living Allowance (DLA) Line (WSCC) (for under 16s) Tel: 0800 121 4600 Telephone service for 13 to 19 year Textphone: 0800 121 4523 olds and their parents/carers, which www.gov.uk/disability-living- can signpost to extra support and allowance-children the Action Against Bullying team. Personal Independence Payments Tel: 0333 014 2904 (PIP) (for ages 16 to 64) www.westsussex.gov.uk/education- Tel: 0800 121 4433 (enquiries) children-and-families/your-space/ Tel: 0800 917 2222 (claims) life/bullying Textphone: 0800 121 4493 (enquiries) Textphone: 0800 917 7777 (claims) Adults’ CarePoint www.gov.uk/pip
Social care support or advice for Benefits Advisor over 18s (for under 18s see the Multi- Agency Safeguarding Hub). Advice and support for families who have children and young people Tel: 01243 642121 with SEND to help them access Email: [email protected] Government benefits including www.westsussex.gov.uk/social-care- DLA, PIP, Carer’s Allowance and and-health/social-care-support/adults Universal Credit.
Benefit Enquiries Tel: 0330 222 2589 / 07850 240874 Email: Attendance Allowance (AA) [email protected] Tel: 0800 731 0122 www.westsussex.gov.uk/education- Textphone: 0800 731 0317 children-and-families/special- www.gov.uk/attendance-allowance educational-needs-and-disability- send/send-benefits-advice Carer’s Allowance Unit Tel: 0800 731 0297 For Blue Badge, see ‘Travel Textphone: 0800 731 0317 Directory’. www.gov.uk/carers-allowance-unit
- 216 - Carers Emergency Alert Card Citizens Advice Scheme Free, independent, confidential Alerts people that you are a carer if and impartial advice on everything you have an accident or fall ill so the from benefits to money and debt, to person you care for can be looked housing, health and law. See website after. for webchat option.
Tel: 01243 778688, email: Offices :in Burgess Hill; Crawley; [email protected] East Grinstead; Haywards Heath; www.chichestercareline.org.uk Horsham; Shoreham and Worthing.
Changing Places Outreach centres: Billingshurst; Broadfield; Henfield; Fully accessible toilets with an adult- Lancing; Pulborough; Roffey; sized changing bench and a hoist. Steyning and Storrington. See website for toilet locations. Advice Line: 0344 477 1171 Tel: 020 7803 2876 TextRelay: 0344 411 1445 Email: changingplaces@ www.citizensadvice.org.uk musculardystrophyuk.org www.changing-places.org Community Equipment Service Child and Adolescent Mental Health Services (CAMHS) Access to equipment is via a GP, occupational therapist, Referrals must be made by a physiotherapist or community nurse. professional from health, social care For delivery, collection, repair or or an educational setting. servicing of equipment, contact NRS Healthcare on: Tel: 0300 304 0100 Email: [email protected] Tel: 0345 127 2931, email: (general enquiries only) [email protected] www.sussexpartnership.nhs.uk/ www.sussexcommunity.nhs.uk/ CAMHS services/all-services.htm
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Essential contacts
District and Borough Councils Worthing Tel: 01903 239999, email: www.westsussex.gov.uk/about-the- [email protected] council/your-other-local-councils/ www.adur-worthing.gov.uk district-and-borough-councils Family Fund Adur Tel: 01273 263000, email: Offers financial support, including a ‘Driving Ambitions’ grant for learner [email protected] drivers. See website for eligibility www.adur-worthing.gov.uk criteria.
Arun Tel: 01904 550055 Tel: 01903 737500 Email: [email protected] Email: [email protected] www.familyfund.org.uk www.arun.gov.uk Family Information Service (WSCC) Chichester Tel: 01243 785166 Run by West Sussex County Email: [email protected] Council to provide free up to date www.chichester.gov.uk information for parents and carers, and young people aged up to 25. Crawley Tel: 01293 438000 Tel: 01243 777807 Email: [email protected] Email: family.info.service@ www.crawley.gov.uk westsussex.gov.uk
Horsham Hospitals with A&E departments Tel: 01403 215100 East Surrey Hospital Email: [email protected] Canada Ave, Redhill, Surrey, RH1 5RH www.horsham.gov.uk Princess Royal Hospital Mid-Sussex Lewes Road, Haywards Heath Tel: 01444 458166 RH16 4EX Email: [email protected] www.midsussex.gov.uk Royal Sussex County Hospital Eastern Road, Brighton, BN2 5BE
- 218 - St Richard’s Hospital NHS Choices Spitalfield Lane, Chichester, PO19 6SE Official NHS website. Includes Worthing Hospital information on conditions, Lyndhurst Rd, Worthing, BN11 2DH treatment and support services.
Jobcentre Plus www.nhs.uk
Helps people find jobs and/or claim NHS England benefits. Offices in Bognor Regis, Chichester, Crawley, Haywards Heath, Sets the priorities and direction of Horsham, Littlehampton and the NHS in England. Worthing. Tel: 0300 311 2233 Tel: 0800 169 0190 Email: [email protected] Textphone: 0800 169 0314, email: www.england.nhs.uk [email protected] www.gov.uk/contact-jobcentre-plus Occupational Therapy (OT)
Multi-Agency Safeguarding Hub Helps people with disabilities (MASH) (WSCC) and other conditions to live more independently. Assessments can be For 0 to 18 years. For over 18s see requested through your GP or the the Adults’ CarePoint. Adults’ CarePoint, see page 216.
Single point of contact for all social Out of Hours GP service care enquiries and safeguarding concerns regarding children and NHS non-emergency number. young people in West Sussex. Tel: 111 (free from landline or mobile)
Tel: 01403 229900 Preparing for Adulthood Out of hours: 0330 222 6664, email: [email protected] Funded by the Department of www.westsussexscb.org.uk/2016/04/ Education, the website contains multi-agency-safeguarding-hub-mash many resources to help parent carers and young people with SEND
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Essential contacts prepare for adulthood. It includes the special educational needs provision. ‘Preparing for adulthood pathways’ Helpline open term-time only. that the Year 9 (transition) annual review paperwork is based on and a Tel: 0300 302 3731 or 020 8538 3731 downloadable information pack. www.sossen.org.uk
Tel: 01225 789135, email: West Sussex Connect to Support [email protected] (WSCC) www.preparingforadulthood.org.uk Information and advice to help with SEND Code of Practice (2015) independence and well-being with links to services, products, groups Statutory guidance for special and activities in West Sussex. educational needs and disabilities, including process for EHC Needs Tel: 0333 600 6330 Assessments and EHC Plans. Email: [email protected] www.westsussex.gov.uk/social-care- www.gov.uk/government/ and-health/west-sussex-connect-to- publications/send-code-of-practice- support 0-to-25 West Sussex County Council (WSCC) SEND Information, Advice and Support Service (SEND IAS) (WSCC) Complaints and comments (ask for the customer relations team) Tel: 0330 222 8555 Tel: 01243 777100 Email: [email protected] Email: [email protected] Young person’s advisor email: [email protected] Disabled Parking (Blue Badge https://westsussex.local-offer.org/ scheme) services/7 Tel: 01243 777653, email: [email protected] SOS! SEN Family Information Free, independent and confidential Tel: 01243 777807, email: help for parents and others looking [email protected] for information and advice on www.facebook.com/FISWestSussex
- 220 - General Enquiries Horsham Tel: 01243 777100 (Covers Burgess Hill, Copthorne, Textphone (Type Talk): Crawley, East Grinstead, Haywards 018001 01243 777100 Heath, Horsham and Pulborough) www.westsussex.gov.uk/contact-us Tel: 01403 227000 (Ext 7160), email: Contact the Adult’s CarePoint for: sc-tr.wheelchairservicehorsham@ • Rehabilitation Officers for the nhs.net Visually Impaired (ROVIs) • Shared Lives Scheme Worthing • Social Care (Covers Findon, Henfield, Pulborough, Rustington, Shoreham, Southwick, West Sussex Local Offer (WSCC) Storrington and Worthing) For more, see page 4. Tel: 01273 265850, email: https://westsussex.local-offer.org sc-tr.wheelchairserviceworthing@ nhs.net Wheelchair and Seating Service, West Sussex For repairs, contact: AJM Healthcare, Hailsham Assesses and provides wheelchairs Tel: 01323 847250 and a seating to people with life-long Email: [email protected] and long-term disabilities. Please note that referrals must be made by health or social care. After a referral is accepted, people are registered with the service. For reassessment and advice you can then contact your local team on the numbers below.
Bognor (Covers Bognor Regis, Chichester, Harting, Littlehampton, Loxwood, Midhurst and Petworth)
Tel: 01243 623650, email: [email protected]
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Local directory
For leisure activities, leisure centres, Tel: 01342 311137 short breaks and buddy schemes, Email: [email protected] please refer to Chapter 4: Social life. www.advancecentres.com
Note: listings marked (SB) are Short The Advocacy Service Breaks providers. Works directly with young people Action for Deafness to ensure their wishes and feelings are heard and given weight in the Provides advice, support, decisions that adults (carers and information and services to enable professionals) make about their deaf, hard of hearing and deafblind lives. Advocacy is independent, young person-led and issue based. people to lead independent lives. Tel: 0330 222 8686, email: Tel: 01444 415582 [email protected] Email: [email protected] www.westsussex.gov.uk/education- www.actionfordeafness.org.uk children-and-families/your-space/ life/advocacy Activus Sensory Room, Worthing The Aldingbourne Trust Sensory room with bubble tubes, infinity mirrors, and a hi-tech Individually tailored care and support interactive floor projection. Please for people with learning disabilities phone first to check the room has and their families. Offers a wide range not been privately booked. of services from supported living to job training and life skills programmes. Tel: 01903 231117 Email: [email protected] Tel: 01243 544607 www.aquaterra.org/centre/activus- Email: [email protected] worthing/sensory-room www.aldingbournetrust.co.uk
Advance Allsorts
Teaches the Scotson Technique to Support for young people aged improve breathing and posture in 5 to 25 who are LGBTU (lesbian, people with disabilities. gay, bisexual, trans, unsure) or questioning their sexuality or gender.
- 222 - Offers an emotional support phone Arun Counselling (Littlehampton) line called Talk It Out, and youth clubs in Horsham and Chichester. Confidential counselling – no one is turned away if they cannot afford to Tel: 01273 721211 pay. Mostly day-time appointments, Email: [email protected] but also offer evenings or Saturday www.allsortsyouth.org.uk/westsussex mornings.
A Potential Diamond Tel: 01903 714417 www.aruncounselling.org.uk Initiative working with young people with autism or learning Aspens (formerly Autism Sussex) disabilities to maximise employment opportunities. Face-to-face support Charity supporting people with only offered to young people at autism and a range of other Manor Green School or College. disabilities, including complex needs. Young people at Crawley College might be supported if funding is Tel: 01892 822168 approved via the college SENDCo. Email: [email protected] [email protected] Tel: 07738 941415 www.apotentialdiamond.org [email protected] www.aspens.org.uk Apprenticeships in West Sussex Autism Support Crawley Helps parent carers and young people search for apprenticeship Support group for families of training in the county. people who have autism or social communication difficulties. Also Email: info@apprenticeships-in- has a closed Facebook page – see west-sussex.com website for details. www.apprenticeships-in-sussex.com/ vacancies-west-sussex.php or: Tel: 07596 737741, email: www.westsussex.gov.uk/jobs/ [email protected] apprenticeships-career-tasters-and- www.autismsupportcrawley.co.uk volunteering/apprenticeships
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Local directory
Barnardo’s Moving Forward Project Blatchington Court Trust
Offers a life skills youth group, Information, support, counselling ten weeks of individually tailored and IT training for visually impaired personal support, and/or fun days people under the age of 30. out for young people with SEND aged 16 to 25. Tel: 01273 727222, email: [email protected] Tel: 01293 610692, email: www.blatchingtoncourt.org.uk [email protected] www.barnardos.org.uk/moving- Bright Futures Charity forward-project-west-sussex- health-life-skills/service-view. Offers advice, support, training and htm?id=261213804 information to adoptive parents and foster carers in Sussex. Belltree Music Therapy Centre www.brightfuturescharity.org.uk The Belltree Music Therapy Centre The Butterfly Project offers a professional music therapy service to people of all ages across Supports adults with learning Brighton and Hove and Sussex. difficulties, autism and disabilities in work and community activities. Tel: 01273 776454 Email: [email protected] Tel: 01403 248580, email: admin@ www.belltree.org.uk thebutterflyprojecthorsham.co.uk www.facebook.com/ Bevern Trust TheButterflyProjectHorsham
Enabling people with profound Carers Support West Sussex disabilities live their lives to the full. Free, confidential and impartial Tel: 01273 400752 information and support to carers. Email: [email protected] www.beverntrust.org Tel: 0300 028 8888 Email: [email protected] www.carerssupport.org.uk
- 224 - Chailey Heritage Clinical Services Chichester Careline
Clinical care services for children Support services for carers including with complex and multiple physical the Carers Emergency Alert Card. disabilities. Tel: 01243 778688, email: Tel: 01825 722112 [email protected] Email: [email protected] www.chichestercareline.org.uk www.sussexcommunity.nhs.uk/ chailey Chichester Counselling Service
Chailey Heritage Foundation Affordable counselling for adults and young people aged 18+. Offers a wide range of services to young adults with disabilities to Tel: 01243 789200 optimise their potential. Includes the [email protected] Future Life Skills Centre, day provision, www.ccs-counselling.org.uk accommodation and Futures Hub. Chichester Down Syndrome Tel: 01825 724444 Support Group Email: [email protected] www.chf.org.uk/ Support group for families of people services-for-adults.html with Down syndrome.
Chestnut Tree House Children’s Tel: 07500 775596 Hospice Email: [email protected] www.facebook.com/groups/ Children’s hospice for children and chichesterds young people aged 0 to 19 with progressive life-limiting or life- Children and Young People’s threatening illnesses. Continence Team
Tel: 01903 871800, email: A nurse-led team who provide a [email protected] tier 2 targeted specialist continence www.chestnut-tree-house.org.uk service to children and young people. Supports families whose
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Local directory children have ongoing difficulties Tel: 01903 277000, email: with bladder or bowel control, [email protected] constipation, withholding and other www.coastalwestsussexmind.org toileting issues. Community Children’s Nursing Tel: 01273 242145, email: Team [email protected] Home and community-based nursing Children’s Continuing Care and for children and young people from Health-led Short Breaks birth to 19 years with complex health needs, life-threatening or life-limiting conditions and acute or Nursing and care support at home long-term conditions. for children with complex health needs, and health-led short breaks. Chichester: 01243 793619 Crawley: 01293 600300 ext. 3207 Tel: 01903 708455 Worthing: 01273 696011 ext.6200 Email: [email protected] www.sussexcommunity.nhs.uk/ www.sussexcommunity.nhs. services/servicedetails. uk/services/servicedetails. htm?directoryID=16348 htm?directoryID=16285 Community Learning Disability Coastal Enterprises Teams (CLDTs)
Day service for adults who have Specialist health and social care staff learning disabilities, focusing on who support adults with learning support and developing independence. disabilities and complex needs.
Tel: 01903 239460, email: For Chichester and Bognor: [email protected] CLDT Western (Bognor) Tel: 0330 222 7888, email: Coastal West Sussex Mind [email protected]
Mental health charity providing For Littlehampton, Shoreham and advice , support. Also runs training Worthing: events for families of young people CLDT Coastal (Worthing) with ADHD and autism. Tel: 0330 222 7778, email: [email protected]
- 226 - For Crawley, Horsham and Mid Sussex: Tel: 01903 790270 CLDT North (Horsham) Email: [email protected] Tel: 01403 229129, email: www.crossroadscare-sc.org [email protected] Cruse Bereavement Care Compass Card (Amaze) Counselling, information and Card for 0 to 25 year olds with SEND support to bereaved people. in West Sussex and Brighton & Hove, which can be used to get discounts or Tel: 0808 808 1677 (central helpline) special offers at leisure venues. Tel: 0300 311 9959 (West Sussex) Email: [email protected] Tel: 0300 123 9186, email: www.cruse.org.uk [email protected] www.compasscard.org.uk Dolphin House
County Deaf Services Complementary, donation-based therapies for children and young Advice, assessments and arranges people. specialist equipment for adults who are deaf or have hearing loss. For Tel: 01273 324790 more, search the website below for Email: [email protected] ‘County Deaf Services’. www.dolphinhouseclinic.com
Tel: 01243 642121 Facebook support groups SMS text: 07736 093462 Minicom: 01403 275515 Use the search bar to find groups. Email: county.deaf.services@ Some hold face-to-face meet ups. westsussex.gov.uk www.westsussexconnecttosupport.org Autism by the Sea (Worthing) Contact Clare Greaves, email: Crossroads Care (SB) [email protected]
Support and flexible day, evening Horsham Parent SEND Support and night services for children and Contact Jane Cross adults with disabilities and health Email: [email protected] conditions. Also runs social clubs.
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PATH – Parenting Autism Together in Tel: 0844 887 2394 or 07934 640814 Horsham Email: [email protected] Contact Sarah Willis www.fmswaws.org Tel: 07588 460954 Email: [email protected] Finches Short Breaks Centre
Reaching Families Respite breaks for children/young Contact Brian O’Hagan people with complex health needs in Tel: 07939 192388 a fully adapted accessible bungalow. Email: [email protected] Tel: 01444 245117 Special Families East Grinstead Email: [email protected] Contact Emma Bashford Tel: 07928 135453, email: admin@ specialfamilieseastgrinstead.org.uk FindItOut Centres www. specialfamilieseastgrinstead.org.uk Information, advice and guidance for young people aged 13 to 25 years Sussex Autism Support (11 to 12 with a parent/guardian). Contact Katarina Wilmore Tel: 07817 250995, email: Tel: 0330 222 2121 [email protected] www.westsussex.gov.uk/education- www.sussexautismsupport.co.uk children-and-families/your-space/ life/finditout-centres West Sussex ADHD Crawley tel: 07973 873651, email: Adur [email protected] Lancing Youth Centre, Penhill Road, Lancing, BN15 8HA Worthing tel: 07765 262524 or Tel: 01903 763639 07875298976, email: [email protected] Bognor Regis Church Path, Glamis Street, Fibromyalgia support group for Bognor Regis, PO21 1DB Worthing and West Sussex Tel: 01243 867430, email: [email protected] Support group for people with fibromyalgia, CFS and ME.
- 228 - Chichester Healthwatch West Sussex New Park Road, Chichester, PO19 7XY Tel: 01243 538587 For information, see page 157. Email: ChichesterFIOCentre@ westsussex.gov.uk Tel: 0300 012 0122, email:helpdesk@ healthwatchwestsussex.co.uk Crawley www.healthwatchwestsussex.co.uk Centenary House, County Buildings, Woodfield Road, Crawley, RH10 8GP HOPE Charity Project Tel: 01293 843327, email: [email protected] Supports young people with mental health issues and their families. Horsham Services include, 1-1 and group/ Youth Hub@Horsham, Hurst Road, family counselling, animal and Horsham, RH12 2DN creative therapies. Tel: 07523 500894, email: [email protected] www.hopecharityproject.org Littlehampton Hyperactive Children’s Support 82 Wick Street, Littlehampton BN17 7JS Group (HACSG) Tel: 07718 322346, email: [email protected] Information and training for families of children and young people who Mid Sussex have ADHD or are hyperactive. Park Centre, 60 Park Road, Burgess Hill, RH15 8ET Tel: 01243 539966 Tel: 01444 243922, email: Email: [email protected] [email protected] www.hacsg.org.uk
Worthing Independent Complaints Advocacy The Place, 24 Marine Place, Service Worthing, BN11 3DN Tel: 01903 210315 For information, see page 158.
Food Banks see Local Assistance Tel: 0300 012 0122, email:helpdesk@ Network healthwatchwestsussex.co.uk
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Independent Lives 16, their families and schools where learning and/or behaviour difficulties Information, care and support are affecting progress. services to enable people with care needs to be independent. Email: [email protected] Tel: 01903 219482, email: https://westsussex.local-offer.org/ [email protected] services/229 www.independentlives.org Learning Assessment and Interactive Room, Littlehampton Neurocare Centre (LANC) Swimming & Sports Centre Works with children, young Interactive room includes dance people and adults with complex mats, sensory lights, games and a DJ neurodevelopmental difficulties. sound system. Tel: 01403 240002 or 01403 260900 Tel: 01903 725451 Email: [email protected] www.freedom-leisure.co.uk www.lanc.org.uk
IPEH Worth Specialist Domestic Learning Disabilities Health Abuse Service (WSCC) Facilitation Team (NHS)
Support service for people at high Nursing team specialising in health risk of harm due to domestic abuse. care for people with learning disabilities. Tel: 07834 968539 / 0330 222 8181 Email: Tel: 01403 227000 (ext 7341) domesticAbuseServicesCentral@ www.sussexcommunity.nhs.uk/ westsussex.gov.uk services/servicedetails. www.westsussex.gov.uk/ htm?directoryID=16352 fire-emergencies-and-crime/ domestic-abuse Local Assistance Network (LAN)
Learning and Behaviour Advisory Short-term practical aid, such as Team (LBAT) (WSCC) food banks or recycled furniture, for people who have no other means of Supports children up to the age of assistance in a crisis.
- 230 - Adur - Worthing Churches Homeless Littlehampton United Church, 1 High Projects Street, Littlehampton, BN17 5EG 1a New Road, Shoreham-by-Sea Tel: 07702 872377, email: BN43 6RA [email protected] Tel: 01903 680748 www.wchp.org.uk/what-we-do/ Email: [email protected] local-assistance-network-lan www.wchp.org.uk/what-we-do/ local-assistance-network-lan Worthing - Worthing Churches Homeless Projects Chichester & Arun – Stonepillow 6-8 Marine Place, Worthing Stonepillow Restore, Unit 3, Plot 27, BN11 3DN Terminus Road, Chichester Tel: 01903 680748 PO19 8UE Email: [email protected] Tel: 01243 213411, email: www.wchp.org.uk/what-we-do/ [email protected] local-assistance-network-lan http://stonepillow.org.uk/projects/ local-assistance UK Foodbank Network (The Trussell Trust) Crawley district – Crawley Open House Phone to be put in touch with your Riverside House, Stephenson Way, nearest foodbank, or search online. Three Bridges, Crawley, RH10 1TN Tel: 01722 580180 Tel: 01293 447702 Email: [email protected] Email: senioradvice@ www.trusselltrust.org/get-help/find- crawleyopenhouse.co.uk a-foodbank www.crawleyopenhouse.co.uk/ advice-and-lan Look Sussex
Horsham district – Horsham Matters Support and events for the families Micah House, Blatchford Road, of children and young people with Horsham, RH13 5QR a visual impairment in Sussex. Also Tel: 0300 124 0204, email: runs a youth club. Search for Look [email protected] Sussex on Facebook. http://horsham-matters.org.uk/ needhelp Tel: 07703 434119 Email: [email protected] Littlehampton – Worthing Churches http://looksussex.org.uk Homeless Projects
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Mid-Sussex Mencap Tel: 01903 779739, email: [email protected] Provides support, social activities www.facebook.com/ and funding to local people with oakcommunityproject learning disabilities. Offington Counselling Service Tel: 01444 471431, email: (Worthing) [email protected] www.midsussexmencap.org.uk Confidential counselling service set up for people who could not MIND otherwise afford it.
Information and support around Tel: 01903 212275 mental health issues. Has advocacy Email: [email protected] workers who can support young www.ocs-counselling.org.uk people/adults in West Sussex. Olive Tree Cottage Tel: 01273 666950 Email: [email protected] Café and garden run by a family who www.mindcharity.co.uk have children with special needs. Sensory area, ducks and rabbits, Money Advice Plus wheelchair friendly. Check Facebook Counselling, advice and support to for opening days/times. people in Sussex who are having trouble managing their finances. 40 Links Avenue, Felpham, PO22 7BX Tel: 07496 076846 Tel: 01273 664000 Email: [email protected] Email: [email protected] www.facebook.com/ www.moneyadviceplus.org.uk friendsofolivetreecottage
Oak Community Project, Outreach 3 Way Rustington (WSCC) Runs leisure and sports activities, a Community-focused day service day centre and offers flexible support for adults with learning disabilities, to young people and adults with providing assessed care within a learning disabilities and/or autism. structured programme of activities.
- 232 - Tel: 0300 303 9001 Royal Sussex County Hospital, Email: [email protected] Brighton www.dimensions-uk.org/service/ Tel: 01273 664511 or 01273 664973. south/outreach-3-way Email: [email protected] Outset Youth Action www.bsuh.nhs.uk/your-visit/help- and-support/patient-advice-and- A county-wide charity that acts as liaison-service-palsRoyak a volunteering agency for young people aged 13 to 25 years. Also Surrey and Sussex Healthcare helps young people with severe NHS Trust disadvantages to move into work. East Surrey Hospital Tel:01798 831153 Tel: 01737 231 958 Email: [email protected] Email: [email protected] www.outsetyouth.org.uk www.surreyandsussex.nhs.uk/ patients-visitors/pals Patient Advice and Liaison Service (PALS) Sussex Partnership NHS Foundation Trust Information and advice service (including complaints) for NHS Tel: 0300 304 2198, email: patients. Hospitals and NHS services [email protected] have been listed by NHS trust. Western Sussex Hospitals: Brighton and Sussex University Hospitals: St Richard’s Hospital, Chichester Tel: 01243 831822 Email: [email protected] Princess Royal Hospital, Haywards Heath Worthing and Southlands Hospital Tel: 01444 448678 Tel: 01903 285032 Email: [email protected] Royal Alexandra Children’s Hospital, Brighton www.westernsussexhospitals.nhs. Tel: 01273 696955 uk/services/patient-advice-and- liaison-service-pals-complaints/
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Pegasus card scheme Rainbow Trust Children’s Charity (Sussex Police) Emotional and practical support Card for people with disabilities or for families of children aged 0 to 18 communication difficulties. It alerts years with life-threatening or life- emergency services that the holder limiting conditions. needs additional help or support. Tel: 01372 220111, email: https://sussex.police.uk/contact- [email protected] us/accessible-contact-methods/ www.rainbowtrust.org.uk pegasus-scheme Reaching Families Phoenix Centre Sensory Room (Bognor Regis) For more, see page 5.
A fully equipped sensory room for Tel: 07939 192388 people with special needs. Email: [email protected] www.reachingfamilies.org.uk Tel: 01243 840075, email: [email protected] Rehabilitation Engineering Service www.theregisschool.co.uk/phoenix- (Chailey Clinical Services) youth-centre Provides a range of rehabilitation Puzzle Pieces (Bognor) engineering services to children and young people with complex physical Parent-led group for parents with disabilities to maximise their children and young people on the independence and safety. autistic spectrum. Meets at Treehouse Children and Family Centre, Bognor. Tel: 01825 722112 Email: [email protected] Tel: 01243 642917, email: www.sussexcommunity.nhs.uk/ [email protected] services/chailey/res.htm www.westsussex.gov.uk/find-my- nearest/children-and-family-centre
- 234 - Relate Sussex Email: [email protected] www.samaritans.org Counselling for parents, carers, couples, families, children and young people. Scope West Sussex
Chichester – Tel: 01243 788935, email: Leisure and social activities for [email protected] people 18 to 50 with physical and sensory disabilities. Crawley – Tel: 01293 657055, email: [email protected] Tel: 01243 775330, email: [email protected] East Grinstead – Tel: 01293 657055 www.scope-west-sussex.org.uk Email: [email protected] SEND Youth Voice
Haywards Heath – Tel: 01273 697997 Gives young people aged 11 to 25 with Email: SEND chance to share their views and [email protected] help to shape future services. Horsham - Tel: 01403 266454, email: [email protected] Tel: 07734 000401, email: Worthing – Tel: 01903 202512, email: [email protected] [email protected] www.rixwiki.org/west-sussex-mmm/ home/youth-participation-1 www.relate.org.uk Sensory Support Team Samaritans of Horsham and Crawley Supports children and young people aged 0 to 19 years who have hearing, Trained volunteers run a free 24-hour visual or multi-sensory needs. helpline afor people to call to talk through problems. You can also drop Tel: 01903 270430, email: in to the Horsham branch. [email protected] www.westsussex.gov.uk/education- 21 Denne Road, Horsham, RH12 1JE children-and-families/special- Tel: 01403 276276 (local rate) educational-needs-and-disability-send National support line: 116 123 (free)
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Signposts needs aged 0 to 16. Held at St Matthew’s church in Worthing. Information, advice and training to people with learning difficulties and Tel: 01903 207024 their parents/carers. www.stmatthewsworthing.co.uk
Tel: 01444 616232, email: Sussex Against Bullying [email protected] (Bognor Regis) www.signpostsmidsussex.org.uk Youth club and holiday scheme for Single Parent Information Network young people aged 11 to 18 who (SPIN) have been affected by bullying.
Information, support, networking, Tel: 07578 534933 and social events for single parents Email: [email protected] in Brighton and Sussex. www.sussexab.org.uk
Tel: 07948 971559 Sussex Association for Spina Bifida Email: [email protected] and Hydrocephalus (SASBAH) http://groupspaces.com/ SPINBRIGHTON For people with spina bifida and/or hydrocephalus and their Smile Support and Care families. Includes activities, a family programme, youth club, welfare One-to-one care for families with assistance and advice. disabled children and young adults. Tel: 01903 230782 Tel: 01903 723333 Email: [email protected] Email: sussex.enquiries@ www.sasbah.org.uk smilesupport.org.uk www.smilesupport.org.uk Sussex Deaf Association
SNAPS Support, social, welfare services and facilities for deaf, deafblind, Drop-in support group for parents deafened and hard of hearing people and carers of children with special across Sussex.
- 236 - Tel/Minicom: 01273 671899 Worthing SMS Text: 07958 655117 Tel: 07704 037664, email: Email: [email protected] [email protected] www.sussexdeaf.com www.reachingfamilies.org.uk/ umbrellas.htm Sussex Mental Health Line (NHS) WEA Reaching Out Programme, Offers support and signposting to Chichester further help. Runs courses for adults with learning Tel: 0300 500 0101 disabilities and other additional www.sussexpartnership.nhs.uk/ needs, such as yoga, tai chi and art. urgent-help-crisis
Sussex Snowdrop Trust Tel: 01243 551683 Email: [email protected] Provides equipment, nursing www.wea.org.uk/southern/projects/ support, and volunteers to families chichester-reaching-out-programme of children with life-threatening or terminal illnesses. Wellspring
Tel: 01243 572433 Information, services and resources Email: [email protected] for children and young people with www.thesussexsnowdroptrust.com disabilities and their families.
Umbrellas Tel: 07742 408868, email: [email protected] SEND support groups run by www.wellspringwestsussex.org.uk Reaching Families in West Sussex. West Sussex ADHD Support Billingshurst Tel: 07305 053237, email: A parent-led volunteer group, [email protected] supporting individuals of all ages with ADHD in West Sussex. Littlehampton Tel: 07704 037664, email: [email protected]
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Crawley Winston’s Wish Tel: 07973 873651, email: [email protected] National charity with a branch in Hove www.facebook.com/groups/ providing support for bereaved children CrawleyADHD and young people up to the age of 18.
Worthing Tel: 0808 802 0021 (helpline) Tel: 07765 262524 or 07875298976 Tel: 01273 805035 (Hove) Email: www.winstonswish.org [email protected] http://help2makesense.org www.facebook.com/groups/ (for bereaved young people) worthingADHD Worthing & District Scope West Sussex Circles Project Day centre, social activities, grant Advocacy, inclusion and support for scheme, housing, and more for young people who are isolated or at risk of people and adults with disabilities – being isolated. cerebral palsy in particular.
Tel: 01444 236593 (Burgess Hill) Tel: 01903 522366, email: Tel: 01293 512257 (Crawley) [email protected] Email: info.southeast@ www.worthingscope.org.uk circlesnetwork.org.uk www.circlesnetwork.org.uk Worthing Mencap
West Sussex Parent Carer Forum For people with learning disabilities and their families. Services include a Parent-led forum providing drop-in centre, information hub, day information, support and training centre, work placements in Buddys to parent carers to help them to Café, sports club and activities. participate in shaping local services. Tel: 01903 202030, email: Tel: 01903 726188 [email protected] Email: [email protected] www.worthingmencap.org www.wspcf.org.uk
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Supports for young carers and their families.
Tel: 01903 270300, email: [email protected] www.westsussex.gov.uk/education- children-and-families/young-carers
Your Space (WSCC)
Advice and support for young people aged 13 to 25 years on everything from careers to relationships. www.westsussex.gov.uk/education- children-and-families/your-space
Youth Emotional Support (YES) (WSCC)
Support and counselling for young people aged 11 to 18 with mental health issues such as depression, anxiety and self-harm. For more, go to the link below and click on ‘emotional wellbeing’
Tel: 0330 222 6711 Email: emotionalwellbeing.yps@ westsussex.gcsx.gov.uk www.westsussex.gov.uk/ education-children-and-families/ your-space/health
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AbilityNet Action for All Speech Impaired Children (AFASIC) Helps children and adults with disabilities use computers and Supports families of children and access the internet. young people with speech, language and communication needs (SLCN). Tel: 0800 269 545 or 01926 312847 Email: [email protected] Tel: 0300 666 9410 www.abilitynet.org.uk www.afasic.org.uk
Accessible Property Register Action for ME
Website listing accessible and Provides information, support adapted property for sale and rent, and advice to people with ME and including holiday lets. chronic fatigue syndrome (CFS).
Tel: 0800 368 9228, email: Tel: 0117 927 9551, email: [email protected] [email protected] www.accessible-property.org.uk www.actionforme.org.uk Action for Sick Children Access to Work Support and campaigning to For more, see page 174. improve health care for sick children and young people. Tel: 0800 121 7479 Textphone: 0800 121 7579 Tel: 0161 486 6788 BSL relay service – see website Email: [email protected] www.gov.uk/access-to-work www.actionforsickchildren.org
Action Against Medical Accidents Action on Hearing Loss (AvMA) Information, advice, hearing checks, Charity providing free independent equipment and campaigning on advice and support to people behalf of people with hearing affected by medical accidents. impairments.
Tel: 0845 123 2352 (helpline) Tel: 0808 808 0123 www.avma.org.uk Textphone: 0808 808 9000
- 240 - SMS: 07800 000360, email: Tel: 0808 800 4050 [email protected] Email: [email protected] www.actiononhearingloss.org.uk www.arthritiscare.org.uk
Activity Alliance (formerly English Asian People’s Disability Alliance Federation of Disability Sport) (APDA)
Helps disabled people to lead active Information, advice, day care, sports lives and sports organisations to be and arts for disabled Asian people. as inclusive as possible.
Tel: 01509 227750 Tel: 020 8459 1030 www.activityalliance.org.uk Email: [email protected] www.apda.org.uk AIDIS Trust, see Everyone Can Association for Real Change (ARC) Ambitious about Autism Information, advice and training Education, training and campaigning and consultancy on person-centred for improved opportunities for services for people with learning people with autism. disabilities.
Tel: 020 8815 5444, email: Tel: 01246 555043 [email protected] Email: [email protected] www.ambitiousaboutautism.org.uk www.arcuk.org.uk
Anti-Bullying Alliance Association for Rehabilitation of Communication and Oral Skills Has a SEND Information Hub with (ARCOS) resources and signposts to further support. Information, advice and therapy for Email: [email protected] people with communication and/or www.anti-bullyingalliance.org.uk swallowing problems.
Arthritis Care Tel: 01684 576795 Email: [email protected] Information, training and networking www.arcos.org.uk for people with arthritis.
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Asthma UK For under 18s: Tel: 0808 801 0711 (youthline), email: Information, advice, research and [email protected] campaigning on behalf of people with asthma. For over 18s Tel: 0808 801 0677 (helpline), email: Tel: 0300 222 5800 [email protected] Email: [email protected] www.beateatingdisorders.org.uk www.asthma.org.uk For all students Attention Deficit Disorder Tel: 0808 801 0811, Information and Support Service email: studentline@ (ADDISS) beateatingdisorders.org.uk Information, advice and training for Brain and Spine Foundation people with ADHD/ADD and their carers/families. Information, advice and training for people affected by brain and spine Tel: 020 8952 2800 conditions, medical and educational Email: [email protected] www.addiss.co.uk professionals.
Barnardo’s Helpline: 0808 808 1000 Email: [email protected] For disabled children and young www.brainandspine.org.uk people and their families. Offers short breaks, crisis intervention, British Association for Counselling holiday schemes, education advice and Psychotherapy (BACP) and support for young carers. Membership organisation governing Tel: 01293 610660 (regional office) the professional standards of www.barnardos.org.uk counsellors and psychotherapists.
Beat Tel: 01455 883300 Email: [email protected] Support for anyone with an eating www.bacp.co.uk disorder.
- 242 - British Association for Supported British Institute for Brain Injured Employment (BASE) Children (BIBIC)
Information and advice for Assessment, therapy and support jobseekers with disabilities, including for children and young people up to support when you have a job and the age of 25 who have brain injuries advising employers on adjustments. or conditions such as autism, ADHD, Also has information on supported learning disabilities and cerebral internships, apprenticeships and palsy. Includes support to develop other government schemes. independence and self-care skills.
Tel: 01204 880733 Tel: 01458 253344 Email: [email protected] Email: [email protected] www.base-uk.org www.bibic.org.uk
British Deaf Association British Pregnancy Advisory Service (BPAS) Deaf-led membership organisation that campaigns for greater equality Organisation offering information, for deaf people. Also runs an counselling and treatment for those advocacy service. who are pregnant.
Tel: 020 7697 4140 Tel: 0345 730 4030 SMS: 07795 410724 Email: [email protected] Email: [email protected] www.bpas.org www.bda.org.uk Brittle Bone Society British Dyslexia Association Supports people with brittle bone Information, advice and training for disease (Osteogenesis Imperfecta) people with dyslexia, their families and their families. and professionals. Tel: 01382 204446 Tel: 0333 405 4567 Email: [email protected] www.bdadyslexia.org.uk www.brittlebone.org
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Brook Carers UK
Information, advice and support on Information, advice and campaigning sexual health for under 25s, including on behalf of all unpaid carers. contraception. Helpline: 0808 808 7777 www.brook.org.uk Email: [email protected] Campaign Against Living Miserably www.carersuk.org (CALM) CEA card, see page 74 Aims to prevent male suicide. Runs a helpline (below) for men who are Cerebra feeling down or need to talk. See website for webchat helpline. Information and advice, a postal lending library, speech therapy, Tel: 0800 585858 grants and parent-to-parent support Email: [email protected] (general enquiries only) for families of children aged 16 and www.thecalmzone.net under with brain-related conditions.
Care Choices Tel: 0800 328 1159 Email: [email protected] Specialist information on care options www.cerebra.org.uk for disabled adults, from independent living to residential care homes. Challenging Behaviour Foundation Tel: 0800 389 2077 Information and advice for families www.carechoices.co.uk and those working with people with Care Quality Commission severe learning disabilities whose behaviour challenges. Independent agency regulating health and social care in England. Tel: 0300 666 0126 Email: [email protected] Tel: 0300 061 6161 www.challengingbehaviour.org.uk Email: [email protected] www.cqc.org.uk
- 244 - Changing Faces Child Brain Injury Trust (CBIT)
Campaigns for and offers care and Family support, information, advice support to individuals and their and training to families of children families who have a condition or and young people with acquired injury that affects their appearance. brain injuries.
Tel: 0300 012 0275, email: Tel: 0303 303 2248 Email: [email protected] [email protected] www.childbraininjurytrust.org.uk www.changingfaces.org.uk Child Death Helpline Charlotte’s Tandems Freephone service staffed by Loans tandems, tag-alongs and volunteers for anyone affected other equipment free of charge by the death of a child, whether it exclusively to people with disabilities occurred pre-birth, in childhood or or additional needs who are unable adulthood. to ride a bike safely on their own. Tel: 0800 282 986 (from a landline) www.charlottestandems.co.uk Tel: 0808 800 6019 (from mobile) www.facebook.com/groups/ Email: CharlottesTandems [email protected] www.childdeathhelpline.org.uk Child Bereavement UK Child Law Advice Service Information and support for families Intensive support phone lines for and young people, plus training to complex matters and clarifying professionals working with families questions. Run by the Coram who have lost a child or when a child Children’s Legal Centre. Suggests is bereaved. people read the terms and conditions on the website before Tel: 0800 028 8840, email: calling or messaging via the site. [email protected] www.childbereavementuk.org Tel: 0300 330 5480 (family or child law) Tel: 0300 330 5485 (education law) https://childlawadvice.org.uk
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National directory
Child Maintenance Service Can help with circles of support, independent and collective advocacy Government agency that seeks to and person-centred planning. ensure parents who live apart from their children contribute financially Tel: 01788 816671 to their upkeep. Email: [email protected] www.circlesnetwork.org.uk Tel: 0345 266 8792 Textphone: 0345 266 8795 Cleft Lip and Palate Association (CLAPA) https://childmaintenanceservice. direct.gov.uk/public Information on activities for children and young people, advice on Children’s Heart Association treatment and offers peer support and volunteering opportunities. Support group run by and for the family and friends of children and Tel: 020 7833 4883 young people with heart disorders. Email: [email protected] www.clapa.com Tel: 01706 221988 Email: [email protected] https://heartchild.info The Compassionate Friends
Children’s Heart Federation Charity run by bereaved parents offering support to parents, Information, advice and grants grandparents and siblings who have for families of children and young lost a child of any age. people with heart conditions. Tel: 0345 123 2304 Tel: 0808 808 5000 Email: [email protected] Email: [email protected] www.tcf.org.uk www.chfed.org.uk Computers for the Disabled Circles Network Information, advice and the Works with people of any age who provision of recycled computers to are isolated or at risk of isolation. disabled people and organisations.
- 246 - Tel: 01268 284834 or 07949 530509 providing information on moving Email: [email protected] to adulthood for young people and www.cftd.co.uk professionals and Making Ourselves Heard, focusing on participation of Contact (formerly Contact a Family) disabled children and young people.
Supports families of disabled children Email: [email protected] and professionals. Website has www.councilfordisabledchildren.org.uk online information, advice, resources on conditions and a chat forum. Cystic Fibrosis Trust
Tel: 0808 808 3555 Information and advice, care and Email: [email protected] support, grants, research and https://contact.org.uk campaigning on behalf of people with cystic fibrosis. Coram Children’s Legal Centre Tel: 0300 373 1000 or 020 3795 2184 Provides legal advice, information Email: [email protected] and representation where possible www.cysticfibrosis.org.uk for children, young people and families in cases relating to social DES (Disability Equipment Service) services and community care. (formerly AskDES)
Email: [email protected] National website for buying and www.childrenslegalcentre.com selling of new and used disability aids and equipment. Council for Disabled Children Tel/SMS: 07845 041678, Umbrella organisation for England’s https:// disabled children’s sector, bringing disabilityequipmentservice.co.uk together professionals, practitioners and policymakers. Online resources Diabetes UK for parent carers, young people and professionals. Supports local Information and advice, training, authorities to ensure parents and advocacy, support groups and young people have access to IAS campaigning on behalf of people services. Runs the Transition Network affected by diabetes.
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National directory
Tel: 0345 123 2399 Personal Budgets helpline Email: [email protected] Tel: 0330 995 0404, www.diabetes.org.uk email: personalbudgets@ disabilityrightsuk.org Disability Law Service www.disabilityrightsuk.org
Disabled-run organisation providing Disabled Living Foundation free legal advice and representation in specific areas of law – check Provides information, advice and website for more information. training on daily living aids.
Tel: 020 7791 9800 Tel: 0300 999 0004 Email: [email protected] Email: [email protected] www.dls.org.uk www.dlf.org.uk
Disability, Pregnancy and Down’s Heart Group Parenthood Provides information and advice to Practical information and peer families whose children congenital support online for disabled parents, heart defects associated with Down with articles from parents sharing syndome. their personal experiences. Tel: 0300 102 1644 Email: [email protected] Email: [email protected] www.disabledparent.org.uk www.dhg.org.uk
Disability Rights UK Down’s Syndrome Association
Information and advice for disabled Organisation that provides support, people, including fact sheets on advice and information about benefits, independent living and all aspects of Down syndrome, equality. Also runs the Equality including employment, transition to Advisory Support Service, see below. adulthood and benefits.
Disabled Students’ Helpline Tel: 0333 1212 300, email: Tel: 0330 995 0414, email: [email protected] [email protected] www.downs-syndrome.org.uk
- 248 - Dyspraxia Foundation rights. Has information about rights under the Equality Act 2010. NB: Information, advice and training for For advice and support contact the people with dyspraxia, their parents, EASS, above. families and professionals. www.equalityhumanrights.com Tel: 01462 454986, email: [email protected] ERIC, The Children’s Bowel and www.dyspraxiafoundation.org.uk Bladder Charity
Epilepsy Action Information, advice and support to parents of children with continence Information, advice, support and issues and to health professionals. campaigning on behalf of people with epilepsy. Tel: 0845 370 8008 Email: [email protected] Tel: 0808 800 5050 www.eric.org.uk Email: [email protected] www.epilepsy.org.uk Everyone Can (formerly AIDIS Trust) Equality Advisory and Support Service (EASS) Helps people with disabilities to improve their quality of life through Promotes and monitors human the power of technology. Includes a rights and equality, also offers advice gaming service. on issues relating to them. Website has a live chat option. Tel: 0808 800 0009 www.everyonecan.org.uk Tel: 0808 800 0082 Textphone: 0808 800 0084 Family Lives www.equalityadvisoryservice.com Information, advice and support to Equality and Human Rights parents and families. Commission Tel: 0808 800 2222 Challenges discrimination and www.familylives.org.uk protects and promotes human
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National directory
Family Rights Group Tel: 0300 123 6600 Text: 82111 Advises, advocates and campaigns Email: [email protected] for families involved with or www.talktofrank.com requiring social care services. Gingerbread Tel: 0808 801 0366 www.frg.org.uk Information, advice, training and local groups for single and lone Foundation for People with parents. Includes benefits advice for Learning Disabilities parents whose children are school or Supports organisations by providing college leavers. information, training and advice to those working with people with Tel: 0808 802 0925 learning disabilities. Publishes easy www.gingerbread.org.uk read guides on a number of topics as well as resources for families and Go Kids Go! professionals. Provides wheelchair skills training Tel: 020 7803 1100 to children and young people across www.mentalhealth.org.uk/learning- the UK. disabilities Tel: 01482 887163 Fragile X Society Email: [email protected] www.go-kids-go.org.uk Information, advice, resources and peer support to families of children Grandparents Plus with Fragile X Syndrome. Support and advice for grandparents, Tel: 01371 875100 Email: [email protected] especially those in a caring role. www.fragilex.org.uk Tel: 0300 123 7015, email: advice@ FRANK grandparentsplus.org.uk www.grandparentsplus.org.uk/ Confidential advice about drugs, with disability live chat available on their website.
- 250 - Guide Dogs Email: [email protected] www.heartline.org.uk Information, advice and a range of services for young people with vision HemiHelp impairments, including buddy dogs, recreational activities and grants for Information sheets, education assistive technology. packs, handbook and Facebook group for children and young people Young people’s services with hemiplegia and their families. Tel: 0800 781 1444, email: Support services are now provided [email protected] by Contact on the number and email address below. Adult services Tel: (from landlines only) Tel: 020 7608 8700 0345 1430229 Email: [email protected] www.hemihelp.org.uk Email: [email protected] www.facebook.com/ www.guidedogs.org.uk groups/5512952137 Headway Henry Spink Foundation
Information, advice, local groups and Information and resources on campaigning on behalf of people conventional and complementary affected by brain injuries. therapies and research for a wide range of disabilities and conditions. Tel: 0808 800 2244 Email: [email protected] www.henryspink.org www.headway.org.uk Hft (previously Home Farm Trust) Heartline National charity providing support Information, advice and peer services for people with learning support for parents of children with disabilities and autism. a heart disorder. Provides activity weekends for young people aged Tel: 0117 906 1700 / 01243 542714 9 to 17, and subsidised caravan Email: [email protected] holidays for families. www.hft.org.uk
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National directory
Home Ownership for People with LawStuff Long-term Disabilities (HOLD) A website run by Coram Children’s For more information, see page 196. Legal Centre giving free legal information to children and young Tel: 0333 321 4044, people. Check their website to see if Email: helptobuyeastandsoutheast@ your query can be answered there, if not get in touch using the phone bpha.org.uk numbers below. www.helptobuyese.org.uk/help-to- buy/hold Family and child law queries Tel: 0300 330 5480 Information, Advice and Support Education law queries Services (IAS Services) Tel: 0300 330 5485 https://lawstuff.org.uk Umbrella organisation representing and supporting local information Little Blue Cup advice and support services. Helps families of children and adults Email: [email protected] with SEND to replace discontinued https://councilfordisabledchildren. cups, toys, clothing and other small org.uk/information-advice-and- essentials that they rely on. support-services-network https://cyp.iassnetwork.org.uk (for Email: [email protected] under 25s) www.facebook.com/LittleBlueCup Local Government and Social Care Kidney Care UK Ombudsman
Advice, support, counselling, If you have complained to your advocacy and financial assistance for local council, social care or another kidney patients and their families. local public service provider and the problem hasn’t been put Tel: 01420 541424 right, or sorted within 12 weeks, Email: [email protected] you can make a complaint to the www.kidneycareuk.org Local Government and Social Care Ombudsman, who will investigate.
- 252 - Tel: 0300 061 0614 Metabolic Support UK Text ‘call back’ to: 07624 811595 www.lgo.org.uk Information, support and advocacy for young people and families The Makaton Charity affected by inherited metabolic disorders. Information, advice, training and resources to enable people to use the Tel: 0800 652 3181 Makaton system of communication. www.metabolicsupportuk.org
Tel: 01276 606760 Mind Email: [email protected] www.makaton.org Information, advice, training, local groups and campaigning on behalf Mencap of people with mental health needs. Wide ranging services for people with Tel: 0300 123 3393 (information) learning disabilities, their families Email: [email protected] and carers, including information Tel: 0300 466 6463 (legal line) and advice, training, family support Email: [email protected] services, housing, jobs and training. www.mind.org.uk Tel: 0808 808 1111 Email: [email protected] The Mix www.mencap.org.uk Free, confidential support for under MERU 25s online, via social media, mobile phone. Also offers chat rooms for 11 Designs and custom-builds specialist to 25 year olds. equipment for children and young people with disabilities. Also Tel: (helpline/counselling) modifies or repairs existing disability 0808 808 4994 equipment. Crisis Messenger: text THEMIX to 85258 Tel: 01372 725203 www.themix.org.uk Email: [email protected] www.meru.org.uk Motability see Transport directory.
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National directory
Muscular Dystrophy UK information on transition to adulthood. Information, advice, research, grants and campaigning on behalf of people Tel: 020 7843 6000 with muscle-wasting conditions. www.ncb.org.uk
Tel: 0800 652 6352, email: National Citizen Service [email protected] www.musculardystrophyuk.org Open to all 15 to 17 year olds to build work and life skills. National Autistic Society Tel: 0800 197 8010 Information, advice and resources www.ncsyes.co.uk for people with autism and their families. Offers helplines, an online National Deaf Children’s Society forum and services directory. Also (NDCS) runs schools and community services. Information, advice resources and Tel: 0808 800 4104 campaigning on behalf of children www.autism.org.uk and young people with hearing impairments. National Careers Service Tel: 0808 800 8880 Information and advice on careers Email: [email protected] for young people. Offers a CV builder, www.ndcs.org.uk job hunting tools and webchat. www.buzz.org.uk (for young people)
Tel: 0800 100 900 National Eczema Society Textphone: 0800 096 8336 www.nationalcareersservice. Information and advice, resources for direct.gov.uk schools and healthcare professionals, support groups and research. National Children’s Bureau (NCB) Tel: 0800 089 1122 Information, advice, training and Email: [email protected] campaigning on behalf of children, www.eczema.org young people and families. Includes
- 254 - NHS Complaints Advocacy Tel: 0800 068 4141 Text: 07786 209697 Provides free confidential advice to Email: [email protected] people with complaints/concerns https://papyrus-uk.org about the NHS. Parliamentary and Health Service Tel: 0300 330 5454 Ombudsman Text: 07960 022939, email: [email protected] Investigates and makes final www.nhscomplaintsadvocacy.org decisions on complaints that have not been resolved by the NHS, Office of the Public Guardian (OPG) government departments and other public organisations. Protects people in England and Tel: 0345 015 4033 Wales who may not have the mental www.ombudsman.org.uk capacity to make certain decisions for themselves, such as about their Patients’ Association health and finance. Free, confidential information and Tel: 0300 456 0300 advice about health and social care. Email: customerservices@ publicguardian.gsi.gov.uk Tel: 020 8423 8999, email: www.gov.uk/government/ [email protected] organisations/office-of-the-public- www.patients-association.org.uk guardian PINNT Papyrus Information, advice and support Organisation working to prevent groups for patients on Intravenous suicide in young people aged under and Nasogastric Nutrition Therapy 35. Runs HOPELineUK, a phoneline and other feeding methods. giving support and advice to young people and people worried about a Tel: 020 3004 6193 young person’s mental health. Email: [email protected] www.pinnt.com
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National directory
POhWER Rethink Mental Illness
Provides information, advice, Provides a wide range of services support to disabled people and including advice, advocacy, support advocates for people who may lack groups and training for people with mental capacity, to ensure their mental illness. views are taken into account. Tel: 0300 500 0927 Tel: 0300 456 2370 (advice and information) Minicom: 0300 456 2364 www.rethink.org Email: [email protected] www.pohwer.net/west-sussex Rett UK
Reach Information and advice, clinics for diagnosis of children and adults, local support groups and social Membership-based organisation, activities for families affected by providing information and support Rett syndrome. for children and young people with upper limb differences. Tel: 01582 798911 Email: [email protected] Tel: 0845 130 6225 or 020 3478 0100 www.rettuk.org Email: [email protected] www.reach.org.uk Royal National Institute of Blind People (RNIB) Remap Offers information, advice, training Custom-made equipment designed and resources to people with sight and built to help disabled people live loss. Also offers newspapers and more independently. magazines in a variety of accessible formats via the RNIB Newsagent. Tel: 01732 760209 Email: [email protected] Tel: 0303 123 9999 www.remap.org.uk Email: [email protected] www.rnib.org.uk www.rnib.org.uk/newsagent
- 256 - Samaritans see Local Directory Shine
SANE Specialist information, advice and support for people with spina bifida Information, advice and support for and hydrocephalus. people with mental health needs and their families. Offers a confidential Tel: 01733 555988. email: helpline over 16s. [email protected] www.shinecharity.org.uk Tel: 0300 304 7000 Email: [email protected] Shopmobility see Travel Directory www.sane.org.uk
Scope Sibs
Wide range of support including Information, advice and local information, advice, training, groups for child and adult siblings of campaigning, local groups and disabled people. Separate website services for disabled people and their for children and young people, with families and carers. an online forum.
Tel: 0808 800 3333 www.sibs.org.uk Email: [email protected] www.youngsibs.org.uk www.scope.org.uk Sickle Cell Society Sense Information, advice, testing and Wide range of projects and services volunteer support for people and for deafblind people (and those families affected by sickle cell with other complex communication disorders. needs) and their families. Contact via BSL interpreter as well as the methods below. Tel: 020 8961 7795 Email: [email protected] Tel/textphone: 0300 330 9256 www.sicklecellsociety.org Email: [email protected] www.sense.org.uk
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National directory
Signalong Tel: 01925 750271 Email: [email protected] Resources, training and advice www.steps-charity.org.uk on the Signalong system of communication. Syndromes without a name (SWAN)
Tel: 01634 727087 Information, support and an online Email: [email protected] forum for families of children with www.signalong.org.uk undiagnosed genetic conditions. Skiggle Tel: 020 7831 0883 (general enquiries) Network of people willing to give Email: [email protected] disability-related items to others in www.undiagnosed.org.uk times of need. Members can also buy, sell or donate disability aids and Tourettes Action equipment via their marketplace. Charity offering information and https://skiggle.co.uk support for people with Tourette www.facebook.com/SkiggleUK Syndrome and their families.
Special Needs Jungle Tel: 0300 777 8427 www.tourettes-action.org.uk Parent-led information and resources regarding SEND, with Transition Information Network articles, latest research, legal advice and support with the EHCP process. Website covering transition to adulthood for young people with https://specialneedsjungle.com SEND. Steps Tel: 020 7843 6000 Information, advice and support Email: [email protected] for people affected by lower limb http://councilfordisabledchildren.org. conditions such as talipes (club foot) uk/transition-information-network and hip dysplasia.
- 258 - Unique (Rare Chromosome Young Epilepsy Disorder Support Group) Charity that supports children and Information and support to families young people with epilepsy and and individuals affected by rare associated conditions to develop chromosome disorders, and the their full potential. professionals who work with them. Tel: 01342 832243 (general enquiries) Tel: 01883 723356 Tel: 01342 831342 (helpline) Email: [email protected] Email: [email protected] www.rarechromo.org www.youngepilepsy.org.uk
Whizz-Kidz Young Minds
Provides equipment, support and life Mental health information, advice skills to help disabled young reach and resources for children and young their full potential. people.
Tel: 020 7233 6600 Tel: 0808 802 5544 (parents’ helpline) Email: [email protected] Email: www.whizz-kidz.org.uk [email protected] www.youngminds.org.uk Working Families
Information, advice and campaigning for better work-life balance for UK families.
Tel: 0300 012 0312, email: [email protected] www.workingfamilies.org.uk
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Further and higher education directory
SPECIALIST SECONDARY Queen Elizabeth II Silver Jubilee SCHOOLS AND SIXTH FORMS School (QEII)
Fordwater School School for two to 19 year olds with severe or profound and multiple Co-educational school for two to 19- learning difficulties and other year-olds with severe and complex complex needs. learning difficulties. Comptons Lane Summersdale Road Horsham, RH13 5NW Chichester, PO19 6PP Tel: 01243 782475 Tel: 01403 266215 Email: [email protected] Email: [email protected] www.fordwatersch.co.uk www.queenelizabeth2.w-sussex.sch.uk
Manor Green College Woodlands Meed College
Secondary school for students aged For young people aged 14 to 19 with 11 to 19 who have a range of learning a range of special educational needs. difficulties and other complex needs. Birchwood Grove Road Lady Margaret Road, Ifield Burgess Hill, RH15 0DP Crawley, RH11 0DX Tel: 01444 244133, email: Tel: 01293 520351 [email protected] Email: [email protected] www.woodlandsmeed.co.uk www.manorgreen-college. w-sussex.sch.uk/web INDEPENDENT SPECIALIST SIXTH FORMS Oak Grove College
A secondary school providing special Chailey Heritage School education for students aged 11 to 16 (out of county) who have learning difficulties. A charitable special school for The Boulevard children aged three to 19 years with Worthing, BN13 1JX complex physical disabilities, high Tel: 01903 708870, email: health needs, visual and hearing [email protected] impairments and associated learning www.oakgrovecollege.org.uk difficulties.
- 260 - Haywards Heath Road social and mental health difficulties, North Chailey, Lewes including challenging behaviour, East Sussex, BN8 4EF autism and ADHD. Tel: 01825 724444 www.chf.org.uk Barns Green, Horsham, RH13 0NJ Farney Close School Tel: 01403 730302 Email: [email protected] A mixed residential special school www.muntham.org.uk for 9 to 18 year olds with social, emotional and behavioural Philpots Manor School difficulties, Asperger’s, Tourette Syndrome, moderate learning Day/residential education for difficulties, dyslexia or moderate children aged seven to 19 with speech and language difficulties. a range of social, emotional, behavioural and mental health needs Bolney Court, Crossways, Bolney or social communication difficulties. Haywards Heath, RH17 5RD Tel: 01444 881811 West Hoathly, www.farneyclose.co.uk East Grinstead, RH19 4PR Tel: 01342 810268, email: Ingfield Manor School [email protected] A day and weekly boarding school www.philpotsmanorschool.co.uk for children aged three to 19 years with cerebral palsy or physical Springboard Education difficulties. Education for children aged 11 Ingfield Manor Drive, Five Oaks, to 19 with social, emotional and Billingshurst, RH14 9AX behavioural difficulties, attention Tel: 01403 782294, email: deficit disorders or Asperger’s. [email protected] www.ingfieldmanorschool.co.uk 55 South Street Lancing, BN15 8AN Muntham House School Tel: 01903 605980, email: [email protected] Day/residential school for boys aged www.springboardeducation.co.uk eight to 18 years with emotional,
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Further and higher education directory
MAINSTREAM SCHOOLS WITH Hazelwick School SIXTH FORMS IN WEST SUSSEX Has a Sensory Support Centre for The Angmering School children with hearing or visual impairment. Station Road Angmering, BN16 4HH Three Bridges Tel: 01903 772351, email: Crawley, RH10 1SX [email protected] Tel: 01293 403344 www.angmeringschool.co.uk Email: [email protected] www.hazelwick.org Bishop Luffa School The Holy Trinity Church of England Westgate Secondary School Chichester, PO19 3HP Tel: 01243 787741 Buckswood Drive, Gossops Green www.bishopluffa.org.uk Crawley, RH11 8JE Tel: 01293 423690, email: Chichester High School [email protected] www.holytrinity.w-sussex.sch.uk Kingsham Road Chichester, PO19 8EB Ifield Community College Tel: 01243 787014 Email: [email protected] Crawley Avenue, Crawley, RH11 0DB www.chs-tkat.org Tel: 01293 420500 Email: [email protected] Felpham Community College www.ifieldcc.w-sussex.sch.uk Imberhorne School Felpham Way, Felpham Bognor Regis, PO22 8EL Imberhorne Lane Tel: 01243 826511 East Grinstead, RH19 1QY Email: [email protected] Tel: 01342 310986 www.felpham.com Email: [email protected] www.imberhorne.co.uk
- 262 - The Littlehampton Academy Shoreham Academy
Fitzalan Road Kingston Lane Littlehampton, BN17 6FE Shoreham-by-Sea, BN43 6YT Tel: 01903 711120 Tel: 01273 274100, email: Email: [email protected] [email protected] www.tla.woodard.co.uk www.shoreham-academy.org Midhurst Rother College Sir Robert Woodard Academy North Street Midhurst, GU29 9DT Upper Boundstone Lane, Sompting, Tel: 01730 812451, email: Lancing, BN15 9QZ [email protected] Tel: 01903 767434, email: www.mrc-academy.org [email protected] www.srwa.woodard.co.uk Oriel High School Steyning Grammar School Maidenbower Lane, Maidenbower, Crawley, RH10 7XW Has a special needs team supporting Tel: 01293 880350 pupils with learning, behaviour and Email: [email protected] physical difficulties. www.oriel.w-sussex.sch.uk Shooting Field The Regis School Steyning, BN44 3RX Tel: 01903 814555 or for Sixth Form Westloats Lane College: 01903 810526 Bognor Regis, PO21 5LH Email: [email protected] Tel:01243 871010, email: www.sgs.uk.net [email protected] www.theregisschool.co.uk St Wilfrid’s Catholic School Sackville School St Wilfrid’s Way, Old Horsham Road Lewes Road Crawley, RH11 8PG East Grinstead, RH19 3TY Tel: 01293 421421 Tel: 01342 410140, email: Email: [email protected] [email protected] www.stwilfrids.com www.sackville.w-sussex.sch.uk
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Further and higher education directory
Thomas Bennett Community Tel: 01903 823546 College Email: [email protected] www.asphaleia.co.uk Ashdown Drive, Crawley, West Sussex, RH10 5AD East Clayton Farm Tel: 01293 526255, email: [email protected] Offers alternative provision for www.thomasbennett-tkat.org young people primarily at risk from permanent school exclusion. The Weald Community School and Sixth Form Tel: 01903 741011 Email: [email protected] Station Road www.eastclaytonfarm.org.uk Billingshurst, RH14 9RY Tel: 01403 787200 (main school) West Sussex Alternative Provision Tel: 01403 787283 (sixth form) College (WSAPC) Email: [email protected] For young people (up to year 11 only) www.theweald.org.uk who have been permanently excluded, are at risk of exclusion or cannot MAINSTREAM SIXTH FORM attend school for medical reasons. COLLEGES Centres located across the county – see website for more information. College of Richard Collyer Tel: 0330 222 5209, email: Hurst Road [email protected] Horsham, RH12 2EJ http://apcollege.co.uk Tel: 01403 210822 Email: [email protected] FE COLLEGES www.collyers.ac.uk Chichester College (including OTHER OPTIONS Brinsbury Campus, Pulborough)
Asphaleia Training Westgate Fields Chichester, PO19 1SB Runs provision for young people Tel: 01243 786321 aged 14 to 25 who may find Email: [email protected] mainstream education a struggle. www.chichester.ac.uk
- 264 - Crawley College LOCAL UNIVERSITIES (including Horsham Training Centre) University of Brighton College Road Crawley, RH10 1NR Mithras House, Lewes Road Tel: 01293 442213 Brighton, BN2 4AT Tel: 01273 644644 (admissions) Email: [email protected] Email: [email protected] www.crawley.ac.uk www.brighton.ac.uk
Northbrook Metropolitan College University of Chichester
Campuses in Worthing and Shoreham College Lane Chichester, PO19 6PE Tel: 0845 155 6060, email: Tel: 01243 816000 [email protected] Email: [email protected] www.northbrook.ac.uk www.chi.ac.uk
Plumpton College (out of county) University of Sussex Sussex House, Falmer Offers practical courses including Brighton, BN1 9RH horticulture, floristry and landscaping. Tel: 01273 606755 Also offers apprenticeships and Email: [email protected] supported internships. www.sussex.ac.uk
Ditchling Road, Plumpton EDUCATIONAL ORGANISATIONS East Sussex, BN7 3AE Tel: 01273 890454 ACE Education Advice www.plumpton.ac.uk Provides free, confidential Worthing College information, advice and support to parents across a range of issues including special educational needs. 1 Sanditon Way Worthing, BN14 9FD Tel: 0300 011 5142 (advice line) Tel: 01903 275755 Email: [email protected] Email: [email protected] (general enquiries) www.worthing.ac.uk www.ace-ed.org.uk
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Further and higher education directory
Alliance for Inclusive Education ClearVision (ALLFIE) Postal lending library of mainstream National network of disabled people, children’s books with braille and parents and teachers campaigning printed text, and tactile books. for inclusive education. Tel: 020 8789 9575 Tel: 020 7737 6030 Email: [email protected] Email: [email protected] www.clearvisionproject.org www.allfie.org.uk Disabled Students’ Allowances see Autism and Social Communication Student Finance England. Team (WSCC) Down Syndrome Education A team of specialists with expertise International in autism who aim to promote the educational, social and emotional Information, advice and research to development of children/young improve education and outcomes for people; working with their parents young people with Down syndrome. and educational settings. Referrals should be made via schools. Tel: 0330 043 0025 Tel: 0330 222 8525, email: Email: [email protected] [email protected] www.dseinternational.org/en-gb https://westsussex.local-offer.org/ services/114 Educational Psychology Service (WSCC) Centre for Studies on Inclusive Education (CSIE) Works with children, young people, parents and schools using Lobbying, campaigning, research psychology to improve learning and and training for inclusive education. development. It provides advice to the Local Authority (LA) to support Tel: 0117 353 3150 assessments of children’s SEND. For Email: [email protected] general enquiries call the number www.csie.org.uk below.
- 266 - Tel: 01903 839308, email: adviser and obtain a certificate to [email protected] prove that you have done so. http://schools.westsussex.gov.uk/ Services/3282 Tel: 0800 064 4488 Email: [email protected] Ethnic Minority and Traveller www.globalmediation.co.uk Achievement Service Independent Parental Special Works with schools and families to Education Advice (IPSEA) raise the attainments of children from black, Asian, Roma, Traveller Independent advice on education and other ethnic minorities. matters for families of children with SEND. Also provides training Black, Asian and ethnic minority on the SEND legal framework to service help parents and professionals, an Tel: 0330 222 2111 advice service and a tribunal advice Email: [email protected] service. Book a call back if needed on their website. Traveller service Tel: 0330 222 2155 www.ipsea.org.uk Email: [email protected] http://schools.westsussex.gov.uk/ Services/3381 Learning and Behaviour Advisory Team (LBAT) (WSCC) First-tier Tribunal, see SENDIST Supports young people up to the Global Mediation age of 16, their families and schools where learning and/or behaviour If you disagree with the Local difficulties are affecting the young Authority over EHC assessment, the person’s progress in school. provision of or content of an EHC Plan, you have the right to go to Email: mediation, or to appeal to the First- [email protected] tier Tribunal. In order to register an https://westsussex.local-offer.org/ appeal to the tribunal, you must first services/229 contact an independent mediation
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Further and higher education directory
Listening Books National Union of Students (NUS)
Postal and internet-based library Represents the interests of students. service providing audio books Every university and most colleges for people who find it difficult or have a student union affiliated to impossible to read owing to illness, the NUS, which provides support to learning difficulties or disabilities. students and information and advice for prospective students. Tel: 020 7407 9417 Email: [email protected] Tel: 0845 521 0262 www.listening-books.org.uk www.nus.org.uk www.facebook.com/ NASEN nationalunionofstudents
Promotes the education, training, Natspec and development of all those with special educational and additional Online directory of organisations learning support needs. offering specialist further education and training for students with Tel: 01827 311500 learning difficulties and/or Email: [email protected] disabilities. www.nasen.org.uk Tel: 0115 854 1322 The National Careers Service Email: [email protected] www.natspec.org.uk Information and advice about education, training and work. Network 81 Webchat or email form available on website. Information, advice, training and befriending to parents on issues Tel helpline: 0800 100 900 around special educational needs. Text messages: 07766 413219 Textphone: 08000 968336 Tel: 0845 077 4055 www.nationalcareersservice.direct. Email: [email protected] gov.uk www.network81.org.uk
- 268 - NICE SENDIST (Special Educational Needs and Disability Tribunal) also Workshops, training and outreach known as First-Tier Tribunal services on principles and methods of conductive education for people with Tribunal that hears appeals by movement disorders such as global parents against decisions made development delay, dyspraxia, cerebral by their local education authority palsy and acquired brain injury. concerning their child’s education.
Tel: 0121 449 1569 Tel: 01325 289350, email: Email: foundation@ [email protected] conductive-education.org.uk www.gov.uk/courts-tribunals/first- www.conductive-education.org.uk tier-tribunal-special-educational- needs-and-disability Ofsted (Office for Standards in Education, Children’s Services and Sensory Support Team Skills) Provision of services to children and Government body that regulates young people aged 0 to 19 years who and inspects schools and children’s have hearing, visual or multi-sensory services. needs.
Tel: 0300 123 1231 Tel: 01903 270430. email: Email: [email protected] [email protected] www.gov.uk/government/ www.westsussex.gov.uk/education- organisations/ofsted children-and-families/special- educational-needs-and-disability-send Pupil Entitlement Student Bursary Support Service Works with schools and families to ensure high levels of school Online service used to administer attendance. Also offers advice and student support for the Care to Learn support to parents who home-educate. scheme and the 16 to 19 Bursary Fund for vulnerable students. Tel: 0330 222 8200 http://schools.westsussex.gov.uk/ www.gov.uk/guidance/student- Services/3328 bursary-support-service
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Further and higher education directory
Student Finance England Billingshurst, Pulborough and surrounding areas Government website with details of (Weald SEND Alliance) funding that students are entitled to, including Disabled Students’ Email: [email protected] Allowance. http://wealdsendalliance.org.uk
Tel: 0300 100 0607 Burgess Hill and surrounding areas (Meeds SEND Alliance) Textphone: 0300 100 0622 www.gov.uk/student-finance/ Tel: 01444 244133, email: extra-help [email protected] www.woodlandsmeed.co.uk University and College Admission Service (UCAS) Chichester, Bognor and surrounding areas (NOVIO) Central organisation that processes university applications. Can support www.noviosupport.org young people making post-GCSE choices and those applying for Horsham (Compass@QEII) undergraduate/postgraduate courses. Tel: 01403 266215 Tel: 0371 468 2568 (year 11 students) Email: compass@ Tel: 0371 468 0468 (undergraduates) queenelizabeth2.w-sussex.sch.uk www.ucas.com www.queenelizabeth2.w-sussex.sch. uk/website/compass__qeii SEND HUB NETWORKS Littlehampton and surrounding areas (SHELL) SEND Hub Networks enable schools and other organisations to share www.shellhub.org expertise locally and access support for young people with SEND aged Midhurst, Petworth and 0 to 25. If you feel your child needs surrounding areas (Rother Valley additional educational support speak Inclusion) to your child’s school to see what your local SEND Hub Network can offer. Email: [email protected] www.rvhub.org.uk
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Travel directory
The Aldingbourne Trust Email: [email protected] www.disabledgo.com Can help disabled people to plan travel, apply for discount schemes Disabled Person’s Bus Pass and book tickets. Issued by West Sussex County Council. www.aldingbournetrust.co.uk Tel: 0330 222 6222 Blue Badge Scheme (WSCC) Email: [email protected] www.westsussex.gov.uk/roads-and- Tel: 01243 777653, email: travel/travel-and-public-transport/ [email protected] bus-and-coach-travel www.westsussex.gov.uk/bluebadge Disabled Person’s Railcard Bus companies Offers adults with disabilities a www.westsussex.gov.uk/roads-and- third off most fares across the UK. travel/travel-and-public-transport If you’re travelling with a carer they will also get a third off their rail fare. Community Transport Tel: 0345 605 0525 Various Community Transport Service Minicom/Textphone: 0345 601 0132 providers operate in West Sussex. Email: They can help people who find it [email protected] difficult to use public transport. www.disabledpersons-railcard.co.uk www.westsussex.gov.uk/ Helping Hand Scheme communitytransport A simple card that the holder can Disabled Go pass to a bus driver to give them extra information such as ‘can you Website with information on call out the correct stop’ or ‘needs accessible places across the UK, priority seating’. including shops, restaurants and train stations. Tel: 01273 886200 www.metrobus.co.uk/helping-hand- Tel: 01438 842710 scheme
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Travel directory
Motability Pass Plus
National scheme enabling people to A six-hour course designed to help exchange the Higher Rate Mobility new drivers to improve their skills component of Disability Living behind the wheel. Allowance (DLA) or the Enhanced Rate Mobility component of Personal www.gov.uk/pass-plus Independence Payment (PIP) for a car, powered wheelchair, or scooter. The Rough Guide to Accessible Britain Tel: 0300 456 4566 Minicom/Textphone: 0300 037 0100 Online guide with reviews and www.motability.co.uk information on disabled access at attractions around the UK. National Express Disabled Coachcard www.accessibleguide.co.uk
Offers a third off travel on National Shopmobility Express coaches throughout the UK. National federation of wheelchair, Tel: 0871 781 8181 scooter and mobility providers. Tel: 0371 781 8181 (assistance) www.nationalexpress.com/en/offers/ Tel: 01933 229644 (central enquiries) coachcards/disabled Email: [email protected] www.nfsuk.org National 16-25 Railcard Bognor Tel: 01243 830077 Railcard offering 16 to 25 year olds a www.bognorshopmobility.co.uk third off rail fares. Mature students in full-time education can also apply. Chichester Tel: 07932 802778 www.cfirst.org.uk – search for Tel: 0345 300 0250, email: ‘Chichester’ [email protected] www.16-25railcard.co.uk Horsham Tel: 01403 249015 www.horsham.gov.uk – search for ‘shopmobility’
- 272 - Littlehampton Tel: 01903 733004 to the distance, type of course and www.shopmob1.plus.com their needs.
Worthing Tel: 01903 820980 Tel: 0330 222 3588, email: www.worthingtowncentre.co.uk – [email protected] search for ‘shopmobility’ www.westsussex.gov.uk/ schooltransport Sussex Student Card Unizone Discount season ticket scheme with up to a third off rail tickets from Season ticket scheme giving home to school or college for 16 to discounted unlimited travel to 19 year olds. college and university students within specific Unizone areas. www.westsussex.gov.uk/studentcard www.southernrailway.com/tickets/ Taxi vouchers (Mid Sussex) discounts-and-railcards/unizone
Tel: 01444 477450, email: Your Space, West Sussex [email protected] www.midsussex.gov.uk/travel Has information on travel schemes and discounts. Tourism for All www.westsussex.gov.uk/education- Information and advice that enables children-and-families/your-space/ disabled people to participate in leisure travel and leisure. JOURNEY PLANNING Tel: 0845 124 9971 Email: [email protected] Local travel www.tourismforall.org.uk www.travelinesoutheast.org.uk
Transport to College Cycle route planner www.westsussex.gov.uk/roads-and- Provides transport to college for travel/travel-and-public-transport young people who are entitled due
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Travel directory
Travel around London www.tfl.gov.uk
National travel www.traveline.info
National Rail Enquiries Tel: 0345 748 4950 Textphone: 0345 605 0600 www.nationalrail.co.uk
National Express Assisted Travel Service Tel: 0371 781 8181 Email: [email protected] www.nationalexpress.com/en/help/ disabled-travellers
- 274 - Reaching Families * Transition Planning * EHC Needs Assessment * EHC Plan * Raising the Participation Age * Shared Lives * Personalised Independence Payment * Apprenticeship * BTec * Person-centred planning * Direct Payments * Advocacy * Inclusion * Bursary * Disabled Student’s Allowance * Needs Assessment * Blue Badge * Personalisation * Assistive Technology * Equality Act * Personal Assistant * Motability * Supported Internship * Senior Planning Co-ordinator * Passported benefits * Respite * Adult CarePoint * Supported Housing * Disabled Facilities Grant * SEND IAS * Accessible Housing * Further Education * Occupational Therapist * Shopmobility * Higher Education * Year 9 Transition Review * Personal Budget * Sensory Needs Service * Circle of Support * Young Carers * Needs Assessment * Mental Capacity * NVQ * Educational Psychologist * PALS * DLA * Local Offer * Employment Support Allowance * Student Union * Appointee * Buddy scheme * Carer’s Assessment * Disabled Facilities Grant * Universal Credit * Specialist Provision * Discrimination by Association * Community Equipment * Inclusion * Parent Carer * Personalisation * Vocational Qualification * Legacy Benefits * Co-production * Jargon Buster
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Disability jargon buster
Introduction support worker to help disabled people at work. This jargon buster is a collection of words used in transition by health, Adults’ CarePoint – your initial social services and education – point of contact to speak to social words, acronyms and phrases we care about support for adults in come across every day. The jargon West Sussex. If you feel your young buster is not comprehensive. That person needs support from social would be all but impossible, but we care, or that you do as their carer, hope that the words and terms we make initial enquiries through the have included are the ones most CarePoint. relevant to parents and families. Advice – term to describe reports If you would like to comment on provided by both parents and our jargon buster or suggest other professionals as part of the process words and phrases we should of Education Health and Care Needs include please contact our Project Assessment (see below). Manager, Brian O’Hagan, at: [email protected]. Advocacy – independent support representing and acting on behalf of Accessible Housing – homes that an individual, family or group. Often have been adapted for example, used to support people with learning they may have ramped access, disabilities. handrails, widened doors, raised electrical sockets, a wet room and Annual Review – yearly meeting other things that make them suitable between teachers, parents and for a disabled person. young people with Education Health and Care Plans (EHC Plans) to review Access to Work – a grant to enable the young person’s progress. disabled people to work, including financial help to you or your Appointee – a parent, friend or employer. Support can include help professional who acts on behalf of with transport costs, equipment someone to help with matters such needed for the workplace, a as claiming Personal Independence communicator at interviews or a Payment (PIP), for example.
- 276 - Apprenticeship – work-based Carer’s Allowance – a taxable schemes where a young person benefit for someone over 16 who (apprentice) works alongside spends at least 35 hours per week experienced staff to gain job- caring for a disabled person and specific skills lead to vocational earns less than £120 per week (after qualifications. Open to over 16s taxes and expenses). who are not in full-time education. Carer’s Assessment – an evaluation Blue Badge – parking permit that of a carer’s needs carried out by allows people with severe mobility social care services in order to decide problems to park nearer to where what help is needed and available. they need to go. CBT (Cognitive Behavioural Therapy) BTec – a vocational qualification, – term used to describe a number often studied by 16 to 19 year olds. of therapies that involve trying to change the way a person thinks Buddy Scheme – pairs up people and behaves. Often used in treating with and without disabilities so that depression, anxiety disorders, low a disabled young person can have self-esteem and/or behavioural peer support and increase their problems. independence. Child Tax Credits – see Legacy Bursary – an amount of money given Benefits. to a person to help them to study. Children’s Community Nursing CAMHS (Children and Adolescent Team – trained nurses who provide Mental Health Service) – mental care to children and young people up health support for children, young to the age of 18 outside of hospital. people under 18 and their families. In West Sussex the service is Circle of Support – informal group provided by Sussex Partnership NHS of people (usually family and Foundation Trust. friends) who meet together on a regular basis to help somebody Care Package – the services accomplish their personal goals in and support provided following life. Sometimes used in supporting assessment by social services. people with learning disabilities.
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Disability jargon buster
Clinical Child Psychologist – a which sets out how disabled people healthcare professional who have been involved in developing diagnoses, assesses and treats the scheme, what improvements children and young people with will be made to policy and service behavioural problems, depression, delivery and how information will be personality disorders. collected to demonstrate how the public body in question has met its Co-production – an approach to targets. working when all team members agree outcomes, recommendations, Disabled Facilities Grant – local plans, actions and materials. council grant towards the cost of It builds on participation and adapting a home for someone who is assumes effective consultation and disabled. information sharing. Disabled Students’ Allowance – a Differentiation– an approach to grant to help students with extra teaching that recognises that all costs occuring as a direct result of a students learn at different rates disability, ongoing health condition, and in different ways and are mental health condition or specific accommodated in the classroom to learning difficulty. ensure they have the best possible chance of learning. Disapplication – removal or lifting of any element of the National Direct Payments – see Personal Curriculum for a child with special Budgets. You can opt to receive your educational needs and disabilities. Personal Budget as a payment to you (or a person you nominate) so that Discrimination by Association – you can choose and arrange your practice of discriminating against own care and support services. someone because of their links with someone else, for example, Disability Equality Duty – a legal employment discrimination against requirement of all public bodies someone with caring responsibilities. to promote equality for disabled Protection against discrimination people. Also requires public bodies by association was included in the to issue a Disability Equality Scheme Equality Act 2010.
- 278 - DLA (Disability Living Allowance) – The plan should be drawn up by the tax-free benefit for disabled children local authority in co-production with under 16 who need help with the young person, their parents and personal care and/or mobility. relevant education, health and social care professionals. Education Supervision Order –legal provision enabling the local Equality Act (2010) – legislation that education authority to supervise a improves the civil rights of disabled child not receiving proper education, people in relation to education, to ensure they receive sufficient full- employment, accessing goods and time education; and their parents services, and for disabled people get advice and support. who rent property and wish to make improvements to their home. Also Educational Psychologist – requires all public bodies to actively professional responsible for promote equality of opportunity for addressing problems encountered disabled people. by children and young people that hinder their learning and First-tier Tribunal – see SENDIST participation in school and other activities. Works in a variety of ways Further Education (FE) – learning including observations, interviews for young people between the ages and assessments, and offers of 16 and 19. It includes school consultation, advice and support to sixth forms, sixth form colleges and teachers and parents. further education (FE) colleges.
EHC Needs Assessment – the Higher Education (HE) – learning process by which children and young provided by universities and similar people with special educational institutions that offer degrees and needs and disabilities are assessed for Higher National Diplomas (HNDs). an Education, Health and Care Plan. Inclusion – commonly used term in EHC Plan (Education, Health and education to describe the principle Care Plan) – for children and young by which children with special people aged up to 25 who need educational needs and disabilities more help in school or college than is attend school and participate in the normally available through standard curriculum alongside other pupils. special educational needs support.
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Disability jargon buster
Inclusion Coordinator – another Mainstream School – ordinary or name used to describe the role of the community school managed by the SENDCo (Special Educational Needs local authority. and Disabilities Coordinator). Mediation – a service commissioned Key Stages – the National by local authorities designed to Curriculum is broken down into four help settle disagreements between phases known as key stages. They parents or young people and are based on age groups: Key Stage local authorities over EHC Needs 1 (5-7); Key Stage 2 (7-11); Key Stage Assessments and Plans before 3 (11-14); Key Stage 4 (14-16). considering tribunal.
Key Worker – health or social care Mental Capacity – if someone has professional who acts as a point of ‘mental capacity’, they’ve the right to contact and source of information make their own decisions, whether and support to children, parents and others agree with those choices or families. Sometimes known as a not. This right is protected by law by Lead Professional. the Mental Capacity Act 2005.
Legacy Benefit– Universal Credit Modification– alteration to a is an integrated means-tested programme of study or activity benefit for people in or out of work. designed to give students better It is replacing: Child Tax Credits; access to that element of the Employment and Support Allowance curriculum. (ESA); Housing Benefit; Income Support; Job Seeker’s Allowance Multi-disciplinary – a group of (JSA); Working Tax Credits, which are professionals who assess and plan now called ‘legacy benefits’. support for a child or adult.
Local Offer – see page 4. National Curriculum – covers the learning of all children aged five to LSA (Learning Support Assistant) 16 years in state schools in England. – widely used term to describe a Includes the subjects children member of school staff who provides should learn, the knowledge, skills individual or small group support in and understanding children should the classroom to children with special have in each subject and targets to educational needs and disabilities. measure progress.
- 280 - Needs Assessment – process carried Passported benefits– benefits you out by social workers to identify both can get if your child receives DLA. a child’s and their family’s needs, They include Carer’s Allowance, and their eligibility for support from extra payments to top up earned social care services. income, and top ups on your own benefits such as Universal Credit. Network 81 – provides support, advice and training around education Pastoral Care – provision by schools for families of children with Special that focuses on the personal, social Educational Needs and Disabilities. and emotional needs of pupils.
NVQ (National Vocational Pastoral Support Plan – school Qualifications) – can be studied by strategy to help children and people in employment, or by school young people improve their social, and college students who are on a emotional and behavioural skills. work placement or working part- Often used with children at risk of time. exclusion.
OFSTED (Office for Standards in Personal Assistant (PA) – someone Education, Children’s Services who provides paid support and care and Skills) – regulates and inspects to disabled children and adults. They childcare and educational services. may offer support with every day Provides online reports on childcare activities such as shopping, leisure providers and schools. activities, washing and personal care. PALS (Patient Advice and Liaison Service) – provides information on Personal Budgets – an agreed the NHS and investigates complaints amount of money that is allocated to a disabled person by their local made by patients. council following an assessment of care and support needs, so that he Parent Carer – term used to describe or she can control the money and and recognise the dual roles of choose their care and support. parents of children with special needs and disabilities who have Personalisation – the provision of caring responsibilities above and tailored care and support to people beyond other parents. based on their individual needs and
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Disability jargon buster the choices they make about how Respite – a break from caring for they want to live their lives. someone with an illness or disability.
Person-centred Planning – Revision – a review of PIP/DLA approach in which people with SEND applications where the person and their families are equal partners disagrees with the rate at which with professionals when planning they have been assessed. If out their life and the support they your application for a revision is need to achieve specific outcomes. successful, the revision takes effect from when the original decision was PIP (Personal Independence made, which means payments can Payment) – a government benefit for people aged 16 and over. be backdated. Intended to help with some of the extra costs caused by a long-term SENAT (SEN Assessment Team) – health condition or disability. the local authority team responsible for doing EHC Needs Assessments Provision Map – a brief document and co-producing an EHC Plan with giving a view of how a school will parents and professionals, if it is support a child with additional decided that a plan is required. needs. SENDCo (Special Educational Psychiatrist – medically qualified Needs and Disabilities Coordinator) doctor who specialises in the – member of staff responsible for the diagnosis, treatment and prevention co-ordination of special educational of mental health conditions. needs provision in schools.
Raising the Participation Age – SEND Code of Practice – statutory legislation that means young people Government guidance for are expected to stay in some form of organisations that work with and education or training until their 18th birthday. support children and young people with special educational needs Re-consideration – the and disabilities. Covers issues like re-assessment of applications the Local Offer, assessments, EHC for PIP or DLA that were initially Plans, annual reviews, inclusion, and turned down. Many decisions are preparing for adulthood,for example. overturned on reconsideration.
- 282 - SEND IAS (Special Educational Short break – fun, leisure and social Needs and Disability Information, activities for children and young Advice and Support Service) – people with SEND outside the school impartial provider of information and day, which also give parents and advice to children and young people carers a break from their caring role. with SEND and their parents about matters relating to their SEND, Specialist Provision – a setting including EHC Plans, assessments, which is organised to make special annual review, appeals and tribunals. educational provision for pupils with Special Educational Needs and SENDIST (Special Educational Disabilities whose needs cannot be Needs and Disability Tribunal) – an met in a mainstream setting. independent body that hears appeals against decisions made by local Statutory Assessment – now known as an EHC Needs Assessment, the authorities on EHC Assessments, process by which local authorities EHC Plans and Statements of SEN. carry out an assessment of a Also known as the First-tier Tribunal. child’s special educational needs. A number of people participate Senior planning Coordinator – a in the process including: parents; key professional from the Local the child’s school or college; an Authority involved in transition educational psychologist; health planning for your child. They should care professionals; and social care be invited to the Year 11 annual services. At the end of the process review and also the Year 12 and the local authority will either issue an 13 reviews if your young person is EHC Plan (see above) or explain why leaving school or college. They may one is not necessary and how the also stay involved when the young child’s needs will be met. person leaves school to attend further education or training. Student Union (SU) – all universities and most colleges have an SU that’s Shopmobility – scheme that affiliated to the National Union of operates in many city centres and Students (NUS). Provides welfare shopping centres where a disabled services and can be a useful source person can borrow a wheelchair or of information and support when scooter. applying to a university, or when you have been offered a place.
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Disability jargon buster
Supercession – a review of PIP/ live as independently as possible. DLA (see above) where the person’s Covers all aspects including further circumstances have changed and education and employment to health they believe they need more help. and social care, where they will live and how they can play an active role Supported Internship – a structured in their local community. study programme based primarily with an employer, which aim to help Universal Credit – a monthly young people who have an EHC benefit payment which is rolling out Plan to achieve paid employment across the country and replaces: through learning in the workplace. Child Tax Credits; Housing Benefit; Internships are unpaid, and last for a Income Support; Income-based minimum of six months. Job Seeker’s Allowance; income- related Employment and Support Supported living – generally means Allowance; and Working Tax Credits living in accommodation where (see Legacy Benefits). there are staff on site, either in a ‘group’ home, where people have Will Trusts – a formal legal their own room but share other arrangement set up as part of a will facilities; or a self-contained flat or studio. It focuses on helping the where the beneficiary is a vulnerable young person to develop their life disabled person to protect people skills and independence, as well as who may not have the capacity to learning to share the responsibility manage their own finances. There for cooking, cleaning and shopping. are several types of trust, including Discretionary Trusts and Disabled Temporary Disapplication – Person’s Trusts (DPT). To qualify for removal of those parts of the a DPT, your child will need to meet National Curriculum where it is certain conditions, such as receiving impossible or inappropriate for the the middle or higher rate care child to participate. component of DLA, or receiving PIP.
Transition Planning – the holistic Work Capability Assessment – an approach to working out what a assessment carried out by a healthcare young person will need to support professional of a person’s capability them as they head towards for work or ‘work related activity’. adulthood to ensure that they can Can include a medical assessment.
- 284 - Working Tax Credit – see Legacy Benefits.
Year 9 Transition 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 with your child, start to plan out what your child would like to do after the age of 16 and how they will be supported to make it happen.
Young carer – a young carer is someone aged 18 or under who helps look after a relative who has a condition, such as a disability. For example, siblings of a disabled young person may have to take on household chores, or help with some care tasks.Young carers can have their needs assessed by social care, too.
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Index
16-19 Bursary Fund 16, 61, 202, 269 benefits advisor 67, 103, 216 British Association for Supported abuse 96, 99–100, 102 Employment (BASE) 26, 176, 243 accessible housing 196, 240, 276 BTec 45, 47, 49, 277 Access to Learning Fund 67 buddy scheme 75, 90, 277 Access to Work 174–5, 240, 276 bursaries 61–2, 269, 277 acute health care 157, 159, 226 bus travel 201, 204, 205–7, 208, 271 adaptations 64, 127, 141, 149–50, 198 ADHD 82, 216, 228, 229, 237, 242, 243, 261 care component (DLA) 110, 111, 112, 125, Adults’ CarePoint 128, 132, 136, 137, 139, 284 140, 144, 145, 150, 151, 154, 188, 198, Carer’s Allowance 91, 111, 126–7, 216, 216, 219, 276 277, 281 adult health services 156, 159–61 carer’s assessment 128, 151–2, 277 adult social care 22, 52, 131–3, 138, 139, carers’ emergency back-up scheme 150 141, 144, 148, 150, 151, 153, 154, 161, 177, Carers’ Wellbeing Fund 153 188, 190, 191, 193 Care Quality Commission (CQC) 149, advocacy 15, 30, 36, 72, 137, 140, 222, 157, 192–3, 195, 244 232, 238, 243, 246, 247, 252, 253, 256, car insurance 210 276 cerebral palsy 51, 70, 82, 238, 243, 261, advocacy workers 36, 232 269 A levels 45, 46, 47, 62 Child and Adolescent Mental Health alternative provision 264 Service (CAMHS) 156, 159, 167, 217, 277 annual health checks (for people with Child Benefit 105, 106 learning disabilities) 168 child development centre (CDC) 156 annual review 14, 15, 17–23, 43, 44, 132, Children and Families Act 4, 14, 131, 132, 161, 186, 201, 220, 276, 282, 283 134, 142 appointee 20, 108, 113, 126, 143, 276 Child’s Needs Assessment 133–8 apprenticeships 16, 43, 45, 47, 54, 173, Child Tax Credits 103, 104, 105, 107, 111, 175, 176–7, 182, 223, 243, 265, 277 277, 280, 284 assured shorthold tenancy 197 Choice-based Letting Scheme 196 autism 25, 26, 70, 72, 73, 75, 77, 82, 83, Citizen’s Advice 128, 217 85, 89, 90, 104, 126, 146, 147, 148, 170, coach travel 204, 206, 272 179, 180, 189, 192, 193, 212, 214, 223, college courses 16, 21, 32, 42, 44, 46–8, 224, 226, 227, 228, 232, 241, 243, 251, 50, 52, 53, 54, 56, 57, 60, 145, 179, 237, 254, 261, 266 265 college transport 57, 202, 273 benefits 5, 16, 30, 62, 67, 91, 103–28, 129, Compass Card 69, 76, 90–1, 206–7, 227 141, 152, 160, 172, 173, 178, 183, 190, 216, complex needs 24, 25, 43, 72, 167, 189, 217, 219, 248, 250, 277, 280, 281, 284, 192, 223, 226, 260 285 communication 15, 27, 37, 38, 68, 100,
- 286 - 109, 116, 18, 124, 125, 199 EHC Needs Assessment 13, 44, 279, 283 community paediatricians 156, 158, 159 EHC Plan 13, 17, 20, 21, 22, 23, 24, 38, 40, community transport 206, 271 43, 44, 47, 51, 55, 58, 59, 60, 64, 115, 132, confidentiality 164, 168 133, 134, 137, 142, 156, 160, 161, 175, 258, contraception 166, 244 267, 279, 282, 283, 284 counselling 59, 65, 152, 166, 167, 223, employment 12, 14, 16, 17, 26, 31, 45, 46, 224, 225, 227, 229, 232, 235, 239, 242, 47, 62, 128, 145, 150, 17285, 202, 223,243, 243, 253 248, 278, 279, 281, 284 cycle route planner 204, 273 entry level awards 46 epilepsy 147, 249, 259 day activities 145–7, 149, 189, 281 Equality Act 2010 29, 31, 58, 63, 249, decision-making skills 31, 32–3, 163 278, 279 degrees 42, 63, 279 equipment 16, 58, 61, 62, 66, 74, 97, 124, deposit (renting) 197–8 128, 138, 149–50, 151, 157, 166, 174, 198, directories 215–74 217, 227, 237, 240, 247, 252, 256, 258, Direct Payments 91, 92, 103, 127, 143–4, 259, 276 148, 149, 190, 278 Disabled Facilities Grant 198, 278 face-to-face assessments (PIP) 110, 112, Disabled Person’s Bus Pass 205, 208, 271 115, 118–21, 122 Disabled Person’s Railcard 205, 207, 271 financial abuse 109 disability coordinator (university) 64 FindItOut Centres 52, 167, 173, 228 Disability Equality Scheme 63, 278 friends 12, 36, 68, 69, 77, 88, 90, 138,150, Disability Living Allowance (DLA) 5, 69, 153, 173, 183, 188, 191, 277 103, 104, 108, 109, 110, 111, 112, 113, 117, funding, further education 51–2, 103, 270 118, 122–6, 127, 141, 208, 209, 210, 216, funding, higher education 63, 64, 65–6, 272, 279, 281, 282, 284 103 Disability Rights UK 64, 116, 118, 128, Further Education (FE) 15, 17, 21, 32, 248 42–62, 106, 175, 200, 201, 202, 268, 279, Disabled Students’ Allowance (DSA) 283, 284 66–7, 270, 278 further education colleges 50–2, 53, 54, Doc Ready 168 63, 175 domestic abuse 230 Down syndrome 25, 70, 225, 248, 266 GCSEs 15, 45, 46, 47, 48, 49, 57, 270 driving lessons 210–1 general practitioner (GP) 156, 157, driving licence 205, 211 158–9, 164, 167, 168, 169, 196, 217, 219 driving test 210, 211–2 growing up and relationships 93–102 dysphasia 82 dyslexia 59, 243, 261 Health and Wellbeing Board 157 dyspraxia 59, 82, 249, 269 healthcare 156–71 health services 22, 52, 156, 157, 158,
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Index
159–61, 166–7, learning difficulties 15, 46, 50, 70, 71, 88, Healthwatch 157–8 89, 175, 180, 224, 236, 260, 261, 268 Helping Hand Scheme 206, 271 learning disabilities 24, 25, 29, 30, 46, 71, hidden disabilities 73, 215 72, 74, 78, 83, 89, 90, 95, 98, 99, 100, 101, Higher Education (HE) 12, 42, 48, 50, 102, 125, 146, 147, 148, 158, 162, 168, 62–7, 265, 279 170, 177, 178, 179, 180, 181, 182, 184, 185, HND 42, 45, 63, 279 189, 192, 194, 222, 223, 226, 230, 232, HOLD 196–7, 252 237, 238, 241, 243, 244, 250, 251, 253, home care services 148–9 268, 276, 277 home ownership 196, 252 learning support coordinator 55, 64 hospitals 95, 100, 113, 156, 157, 159, 160, legacy benefits 104, 105, 110, 277, 280, 218–9, 233, 277 284 housing 14, 138, 149–50, 177, 186–99, Leisure Access Card (Horsham) 91 217, 238, 253, 276 life skills 47, 89, 146, 147, 178, 182, 184, Housing Options Officers 189 190, 202, 222, 224, 225, 254, 259, 284 Human Rights Act 1998 29, 31 Local Offer 20, 44, 69, 132, 145, 221, 282 local universities 201, 265 Income Support see Legacy Benefits location apps 202–3 independence 31, 34, 46, 65, 72, 83, 89, 151, 162, 184, 190, 202, 220, 226, 234, maintenance loans 65 243, 277, 284 masturbation 97–8 Independent Complaints Advocacy medical appointments, managing 164–6 Service 158, 229 medical records 164 independent FE colleges 51–2, 53 meetings, preparing for 19–23, 37–40 Independent Lives 91, 144, 149, 230 mental capacity 28, 30, 141, 154, 255, independent living 12, 72, 146, 189, 244, 256, 280 248 Mental Capacity Act 2005 29–30, 162, independent travel training 202, 203 280 interviews (education) 56–8 mental health 36, 59, 66, 85, 109, 142, interviews (work)174, 179, 276 147, 156, 167, 168, 182, 196, 229, 232, Involving your child 27–41 237, 239, 253, 255, 257, 259, 261, 278, 279 internet safety 92, 101–2 mental health services 157, 159, 166–7, 217, 226, 277 jargon buster 276–85 MIND 36, 226, 232, 253 Jobcentre Plus 172, 173, 174, 175, 219 mobility component (DLA) 112, 125, 126, Job Seeker’s Allowance (JSA) see Legacy 141, 208, 209, 210,272 Benefits mobility component (PIP) 111, 114, 117, journey planning 202, 203–4, 273–4 121, 141, 208, 209, 210, 272 money management 103, 106, 107, landlords 194, 195, 197–8 108–9, 111, 114, 129, 144, 146, 177, 181,
- 288 - 217, 232, 281 private rental sector 197–8 Motability 103, 111, 117, 126, 127, 210, prospectus 52, 56, 63 211, 272 puberty 94–8, 99, 100–1, 166 muscular dystrophy 82, 254 qualifications 21, 45, 46–8, 62, 63, 130, National Careers Service 53, 254, 268 176, 182, 277, 281 National Citizenship Service 183 National Express Disabled Coachcard Raising the Participation Age (RPA) 17, 206, 272 43, 172, 282 National Rail Enquiries 204, 207, 274 Reaching Families 5, 22, 24, 228, 234, 237 National Union of Students (NUS) 64, relationships 93–102, 135, 239 201, 268, 283 residential care 141, 155, 187, 189, 191, NHS 26, 138, 157–8, 160, 166, 168, 169, 194–6, 244 170, 219, 230, 233, 237, 255, 277, 281 respite 74, 148, 153, 189, 228, 282 NHS Choices 158, 219 NVQs 46–7, 63, 281 schools with sixth forms 49, 262–4 self-advocacy 184–5 Ofsted 53, 269, 281 self advocacy groups 184–5 online safety – see internet safety self-esteem 83, 93–4 SENDCo 15, 19, 22, 59, 179, 223, 280, 282 passported benefits 110–1, 281 Send Code of Practice (2015) 12, 14, 220, Patient Advice and Liaison Service 282 (PALS) 233, 281 SEND IAS 18, 19, 22, 23, 24, 42, 44, 53, personal care29, 97, 125, 135, 148, 149, 220 194, 279, 281 SENDIST 23, 269, 283 planning for your child’s future 12–26 senior planning coordinator 17, 20–1, 22, periods 96–7 24, 201, 283 personal assistant (PA)91, 143, 149, 181, sex 94–5, 96, 98–9, 100, 101, 166 281 sexual health services 166, 244 Personal Budgets 133, 136, 142–3, 148, Shared Lives Scheme 149, 187, 193, 221 149, 190, 278 Shopmobility 213, 272–3, 283 Personal Independence Payment (PIP) short breaks 22, , 70, 71, 72, 75, 76, 80, 61, 69, 104, 106, 108, 109–22, 123, 84, 85, 141, 148, 149, 189, 202, 226, 228, 127141, 190, 208, 209, 210, 216, 272, 276, 242 282, 284 sixth form 42, 43, 48–9, 50–1, 54, 55, 56, person-centred approach 18, 19, 37, 134, 59–60, 61, 262–4, 279, 184, 241, 246, 282 sixth form college 43, 54, 164 plusbus 201 skills development 184 PMLD 29, 50, 83, 260 SLD 50 post-16 options 15, 17, 44–60 social care 20, 21, 22, 23, 51, 52, 91, 115,
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Index
119, 131–55, 157, 161, 162, 169, 177, 188, UN Convention on the Rights of Persons 189, 190, 191, 193, 216, 217219, 221, 226, with Disabilities 2008 29 244, 250, 252, 255, 276, 277, 279, 280, Universal Credit 61, 91, 104, 105, 106, 281, 283, 284, 285 107, 108, 111, 216, 280, 282, 284 social housing 149, 195–6, 197 Unizone Season Ticket 201, 273 social life 68–92 social worker 15, 20, 91, 133, 134, 138, vehicle tax exemption 208–9 144, 145, 147, 150, 151, 193, 196 vocational qualifications 45, 46, 47, 49, speech and language therapy 16, 21, 57, 277, 281 59, 157, 159 volunteering 43, 135, 172, 173, 175, 177, specialist provision 51–2, 61, 183, 260–1 181, 182–3, 233, 246 specialist sixth forms 260–1 vulnerable student bursary 61, 269 special rules (PIP) 110 Student Finance England 65–6, 67, 270 welfare services, student 59, 64, 126, 283 student support service 59, 61 wills and trusts 128–30 students’ union 64–5 work capability assessment 107–8, 284 supported internships 47, 175–6, 243, Working Tax Credit see Legacy Benefits 265 work placements 33, 47, 57, 182, 183, supported living 12, 16, 22, 138, 187, 238, 281 190–3, 284 Year 9 annual review 14–5, 17–24, 43, 44, support plan (social care) 134, 136, 132, 134, 161, 185, 220 138–40, 142 young carer 153, 239, 242, 285 Sussex Student Card 200, 272 taster days 53 taxi travel 205, 208, 273 taxi vouchers 208, 273 tenancies 197–8 traineeships 54, 175–6 train travel 200, 201, 204, 271, 272, 273, 274, 207–8 transition planning 12, 13, 14–24, 156, 160–1, 186, 283, 284 travel 50, 62, 66, 68, 119, 127, 128, 146, 178, 179, 200–15 travel apps 204 travel information 204 tuition fee loan 65
UCAS 66, 63, 270
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“So you’ve survived the childhood years. What next? The challenges don’t cease – they’re just different. This book is a wonderful resource to help you facilitate your young person’s transition to a happy, healthy and fulfilled adult life.” Ellen Tomlinson – parent carer, GP and Manager at JubyLee Bakes CIC
“An invaluable tool in supporting families and young people with SEND through the difficult transition to adulthood. We routinely distribute copies to families at Kangaroos.” Jenni Herrett – Kangaroos
“An invaluable, practical guide to transition that enables parents and carers of young people with SEND to navigate a pathway together on their child’s journey to adulthood.” Carys Wreyford – Senior Lecturer in Education (SEND), University of Chichester
“An excellent book that we make available to all the families at Woodlands Meed. This essential guide empowers parents supporting their young person’s transition to adulthood.” Adam Rowland – Head Teacher, Woodlands Meed School
Free to parent carers, but donations towards keeping the book in print are gratefully received and can be made via local giving: https://localgiving.com/charity/reachingfamilies Professionals £5.00
Reaching Families, Registered Charity No: 1150906 www.reachingfamilies.org.uk Find us on Facebook and Twitter