A Parent & Family Guide To Special Needs In West Sussex
Parent & Family Guide to Special Needs in West Sussex
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Contents Introduction / about the Parent & Family Care Foundation........3 1. Diagnosis.........................................................................7 2. Someone to talk to...............................................................15 3. Survival strategies................................................................24 4. Help with money matters....................................................30 5. Health........................................................................53 6. Education....................................................................64 7. Help with daily life................................................................97 8. Social and leisure activities................................................116 9. DIRECTORIES.......................................................................130 Essential Contacts...........................................................130 Local Directory.................................................................134 National Directory...........................................................158 Education Directory.........................................................176 Grant Making Directory...................................................190 Web Directory..................................................................209 Disability Jargon Buster...................................................215
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What makes the guide special other than the wide range of subjects that it covers is that it The majority of the content of has been researched, written and this book has been taken from edited by parents. One of the Through the Maze, a handbook for countryâ€™s leading think-tanks, The parents of children with special Joseph Rowntree Foundation, needs in Brighton, published by described it as a model of local experts in the field, Amaze. good practice in user friendly As the name of the book suggests information for families with it has been designed to help disabled children. We hope you parents find their way through agree with that analysis. the maze of bureaucracy, benefits and services that we must Our version of the book, a Parent navigate in order to best care for & Family Guide to Special Needs in our disabled children. West Sussex, adapts the generic We the Parent & Family Care Foundation have been inspired by what Amaze have achieved in Brighton and so in the Autumn of 2010 we approached them about the possibility of purchasing content from Through the Maze to adapt and publish for a West Sussex audience. The first edition of the book was originally published in 1997. Since then it has been up-dated several times to reflect changes in government policy and local service delivery, a never ending process we quickly realised was a little like painting the Forth Rail Bridge! - 4-
content of Through the Maze to reflect the differences in policy and service delivery in our county. We have also added to the guide by including a jargon buster and grant-making directory. When we come to publishing the book in hard copy we hope to include new chapters on other subjects, for example, the needs of siblings and understanding and managing challenging behaviour. The current version of our guide, available in PDF format only, is effectively the final draft of the book. We are publishing it at a time of great change in both
the public and voluntary sector. Throughout the time we have spent editing the guide several projects and services have closed or merged with others. The picture has changed almost on a daily basis. Meanwhile, the government is pursuing policies that will have a huge but as yet unknown impact on major areas of public welfare including benefits, education, health and social care. For example, at the time of writing West Sussex Parentâ€™s Forum are undertaking a consultation exercise with parents on the proposed government Green Paper on Special Educational Needs and Disability. The paper promises major changes which if passed into law we will then need to include within this guide.
The book we present to you therefore, whilst being the most exhaustive available to parents in West Sussex, is not quite complete. Over the next 4-6 months we will be carrying out a consultation exercise with parents and professionals with the view to further editing after which we will publish the book in print format. We therefore ask that parents and professionals give us their feedback. There may be projects and services out there that are new or we are yet to hear of or changes in public services that are yet to be confirmed or take effect. We would also be interested in your thoughts on the presentation of the guide and whether you think there are other subjects we need to cover either in this book or elsewhere.
Because of these types of changes we have also held back two chapters, on how systems work and transition to adulthood, which we will publish when we are clearer about changes in the delivery of public services. These too will be included in the print edition of the guide.
A number of parents and professionals have already contributed to the editing of this online version of the guide. In particular we would like to thank Becky Wakeham from Worthing Kids & Dapper Snapper, Chris North, Gemma Orpwood from ICIS, Heather McIntosh at the West Sussex Parent Partnership, - 5 -
Jess Elliott, Jillian Lovejoy, John Corr, Lindsey Butterfield from the West Sussex Parents Forum, Nick Dry, and Dr Sue Coldwell from Worthing Children’s Development Centre. We would also like to thank Nicola Braybrooke for volunteering to proof read the book and Charlie Rowlins for his hugely discounted design of the guide, website and accompanying promotional materials. Lastly, we would like to thank Awards for All, the Sussex Community Foundation (Grassroots Grants) and the Wates Foundation for their financial support without which none of what follows would have been possible.
About the Parent & Family Care Foundation Our charity was established by parents in 2008 to “empower, care for and inform parents and families of children with special needs in West Sussex.” We are achieving this through the development of a number of services including training, access to professional counselling and now, with the publishing of this guide, through the delivery of information and advice. - 6-
(©Amaze 2010) The material in this book was originally created by Amaze, a charity that offers information, advice and support to parents of children with special needs in Brighton and Hove. We reproduce it here with their kind permission, replacing their local information with West Sussex. Any redistribution or reproduction of part or all of the contents in any form is prohibited other than the following: you may copy the content to individual third parties for their personal use, but only if you acknowledge the handbook as the source of the material. You may not, except with Amaze’s express written permission, distribute or commercially exploit the content. Nor may you transmit it or store it in a website or other form of electronic retrieval system.
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thought were appropriate.
“It’s like being hit with a mallet, isn’t it?”
On the other hand, a diagnosis is very helpful because you can start to read up on the condition, join relevant local or national organisations, find out about latest research, and perhaps most importantly, meet other parents in the same boat. It can also be a great asset when you’re applying for various benefits to be able to say ‘my child suffers from X syndrome or has Y disability’.
We’ve put this book together because we know how stressful it can be coming to terms with what’s happened to our children. Many of us found the most stressful time of all was when our child was first diagnosed. This process can be very upsetting. We didn’t know that many children with special needs never get a diagnosis. Their needs may be so complex, or their symptoms don’t fit a pattern, or there may simply be no identifiable reason for the child’s condition “I expected them to be able to tell me what was wrong, and they didn’t, they couldn’t, as it were, so that was a bit of a shock. It shakes your faith a bit, doesn’t it? “
We didn’t realise at the start of the process that there are pros and cons to having a diagnosis. Some people find that having a specific diagnosis for their child means they are not eligible for certain schools, or for benefits that we - 8-
“Sometimes if you get a diagnosis, your child is automatically labelled. There’s no expectation of ability.” Did You Know?
30-40% of children with special needs do not have a diagnosis (Source: Syndromes Without a Name)
No two parents feel the same way when they realise something is wrong with their child. Some of us kid ourselves there is nothing wrong, others try to convince their doctor or health visitor there is a problem. Many of us felt completely devastated to start with, then angry - why us?
Did we do something wrong? Could we have done anything to prevent it? Why wasn’t it picked up during pregnancy? And yes, we all felt bereft: ‘This isn’t the child I expected’. “I was doing the reverse - I was frantically making out that it was going to be all right, although I really knew that there was something wrong....I was fighting it all along.” Many of us have felt crushingly guilty at some of the thoughts that go through our heads: ’I don’t want this child, I won’t be able to cope, I don’t want to have to cope’. But whatever you’re feeling at this moment in time - anger, despair, fear or overwhelming protectiveness somebody has been there before. “To me, it was like someone had died, and it takes a long time to come to terms and to be rational about it afterwards.”
Strategies for coping with diagnosis It can take anything from a few months to several years to feel
we are beginning to deal with this different life. We all need a lot of help along the way. But most of us do find the help we need, eventually. It can be worth thinking about what you can do to make better sense of what you are finding out about your child. In the mean time here are just a few suggestions: • If you are expecting news, ask someone to come with you for support. • Don’t worry unnecessarily, make a list of questions you want to ask and take this with you. Ask about anything that worries you. • Ask if you don’t understand what has been said and don’t be rushed, take time to think. • Ask what will happen next, who you can speak to regularly for advice and where you can get more information. • Sharing news with other significant people in your life can be really tough, so ask for help.
Getting a second opinion Sometimes parents want a diagnosis confirmed in order - 9 -
to feel sure they have explored every possible avenue on their child’s behalf. Some doctors are very sympathetic towards these feelings. Your child’s GP or consultant may be willing to refer you to a different consultant for a second opinion, but they don’t have to if they don’t agree it’s necessary. Parents who can afford to might choose to approach consultants privately. Private health care is very expensive and it’s not easy to discover for yourself who is expert in any particular condition. You may be able to get advice about this from The Patients’ Association, the Care Quality Commission or the Patient Advice and Liaison Service (PALS). You find their contact details at the back of this book. If your child has a specific condition, the relevant local or national support group, may provide you with advice or help. Some have medical experts of their own, or it may just help to talk with parents who have faced similar situations or made the same tricky decision. - 10 -
There may be different approaches that other families have found, or simply a different angle on the problem. The Down’s Heart Group, for example, gives support and information to families relating to heart conditions associated with Down Syndrome. Another source of information is the telephone helpline, NHS Direct. “We were shocked when we eventually got a diagnosis, which we weren’t expecting to be serious.”
Where your child might be diagnosed Some of us knew before our babies were born that they were likely to have some sort of disability. It’s a time for lots of questions: ‘What treatment is there?’ ‘Will my baby need surgery?’ ‘Is it life-threatening?’ ‘Where can I find out more?’ Many of these questions can be answered by the consultant who can talk you through what is likely to happen. Some children are referred for extra tests, to Guy’s or King’s
College Hospital in London that specialise in, amongst other things, detailed ultrasound scans. Sometimes our babies start life on the Special Care Baby Units at Chichester or Worthing Hospital and if need of more intensive treatment, at the Trevor Mann Unit at the Royal Sussex County Hospital. They have a counsellor attached to the unit, who is there if you need help in adjusting to the fact that this baby isn’t the one you expected or hoped for. Staff at the unit can offer you advice and support. “Because I was unprepared and felt uncertain ... I was relieved to find he was as loveable as my other children.” Child Development Centres Many children will be diagnosed or assessed at their local Children’s Development Centre or CDC. There are three CDCs in West Sussex – Chichester, MidSussex (Crawley & Haywards Heath) and Worthing. If you are worried your child is not developing normally and would benefit from an assessment
at the centre, you need to ask another professional for a referral, for example, your GP, pre-school teacher, educational psychologist, health visitor or consultant. Many different specialists are based within the CDCs, including paediatricians, social workers, health visitors, clinical psychologists, speech and occupational therapists and physiotherapists. They work together to assess children both individually and collectively, then plan a programme of therapy and treatment. Royal Alexandra Hospital for Sick Children The Alex, as many people call it, is the local children’s hospital where many children are diagnosed. The consultants at the hospital have their own specialist areas, for example, in the treatment of asthma, diabetes and epilepsy, but also hold joint clinics with visiting specialists from hospitals such as Guy’s and Great Ormond Street, to get a clearer picture of your child’s needs and to plan - 11 -
a programme of treatment. Occasionally, your child might be referred to a hospital outside this area which specialises in your childâ€™s condition. The Alex is located in a new building on the site of the Royal Sussex County Hospital. The hospital provides inpatient and outpatient services, including intensive care and a 24 hour emergency care service. The Alex has leaflets for parents about what to expect if your child has an appointment or a stay in the hospital. Chailey Heritage Clinical Services Children with complex physical or neurological disabilities are often referred to Chailey Heritage, near Lewes. Chailey Heritage is made up of two organisations: one is part of South Downs Health (NHS) Trust; the other is Chailey Heritage School. Chailey Heritage Clinical Services offers a range of services for children and young people. These include medical, clinical and therapy services, flexible care - 12 -
(overnight and outreach), day care, education and rehabilitation engineering. Chailey is a highly specialised centre and will only assess children whose needs are complex enough and canâ€™t be met elsewhere. In the Rehabilitation Engineering Unit, engineers and technicians adapt or make equipment to help with mobility and communication. Another team work on postural management. They design and adapt equipment so that children can sit, lie or stand to the best of their ability. Chailey also has its own system of communication which can help some children who do not have any speech. Chailey Heritage Clinical Services has a nursery where small numbers of children with complex needs mix with children without disabilities and all the activities are shared. They are referred by NHS consultants. A whole team of specialists, physio, occupational and speech therapists, paediatricians, nursery nurses and nursing staff work
at what treatment will be best for each child. Children usually attend two or three days a week. Chailey Heritage School offers education on a residential or day basis and they have a preschool unit for young children with complex needs. Assessment and treatment continue at the school, but only for children who have educational statements that name Chailey as the most suitable school. “Up to that point you’re struggling for people to take you seriously and to see there’s something wrong.” Educational Psychology Service If your child’s difficulties are first noticed at school or pre-school they may be referred to see an Educational Psychologist (EP). If your child is already known to other professionals, they may also make a referral. EPs will assess your child’s developmental progress and will give advice on appropriate educational help. They will normally be able to give you a clear idea of your child’s difficulties and in some cases will also refer on to
other professionals for further assessment. CAMHS (Child and Adolescent Mental Health Service) Some children with emotional and behavioural problems may be referred to the Child and Adolescent Mental Health Service (CAMHS) for diagnosis and assessment. This includes many children with conditions like Autism or Attention Deficit Hyperactivity Disorder (ADHD) as well as issues like anxiety and depression. CAMHS have a team who specialise in children’s mental health including child psychiatrists, family therapists, counsellors, play and art therapists. If you think your child needs to go to CAMHS, it’s often easiest to speak to your GP first and ask for a referral to a community mental health worker or CAMHS. You can also be referred by another professional like a school nurse or teacher. It is possible to contact CAMHS directly but they’ll want to know if you’ve tried other less specialist services first, such as the school nurse or your GP. - 13 -
Finding out more If your child receives a specific diagnosis, you may wonder where you can get information about their condition or disability. Many of the most common conditions have local groups which are listed at the back of this book. We also list the most common national organisations. Another good place to start is the NHS Choices website which has a fairly comprehensive A-Z list of illnesses, conditions and disabilities. BUPA also have a similar online directory. If your child has a rare condition it may be more difficult to get the information you need. However, CAF - which offers support and information to parents of children with disabilities - produces a comprehensive directory of specific conditions and syndromes with details of their family support networks. CAF also co-ordinates a contact network for parents whose children have a rare condition or no specific diagnosis. You might also get information and advice from Unique, the rare
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chromosome disorder support group, or SWAN, Syndromes Without a Name. You can find contact details for these organisations at the back of this
book. Did You Know?
Contact a Family produce a Medical Directory which contains information on over 430 medical conditions and rare disorders. Visit www.cafamily.org.uk for further information
2 Someone to talk to Diagnosis
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2. Someone to talk to “Being listened to - that’s really important, to have people around who are prepared to listen to you, because it is important to say how you’re feeling.” Finding out your child has special needs may be very painful. Sometimes years after we first heard the news, many of us still relive everything that happened at that time. Our children are all very different, but the one thing we all have in common is the need to talk about what happened. For some of us, having a supportive family was enough. Some of us met someone who was a marvellous shoulder to cry on. Others were pointed in the direction of a parent support group or counsellor.
Groups for specific conditions “That’s what I found the most helpful - that other couples had gone through the same things as me, and you know they’re still around - sometimes you tend to think you are the only person that this has ever happened to.” - 16 -
Especially in the early days, many parents find that joining a parent support group specifically for our child’s condition is a life-saver. If your child has just been diagnosed and you’re frightened of what might lie ahead, meeting a parent with an older child with similar needs to yours can make you feel more able to manage. People whose children have similar needs can be a great source of support and information, and they may also become good friends. “It’s useful for a parent to meet another parent who’s got a child that’s a bit further down the line...” Parents for Autism meet monthly at Maybridge Children & Family Centre in Durrington whilst Worthing KiDS & Dapper Snappers run a support group for parents of children with Down Syndrome from Worthing and the surrounding area. Worthing Scope also run a support group for families and carers of children with cerebral palsy that meets on the last Saturday in the month. Autism Sussex also run 3 support groups for parents of children with Aspergers Syndrome in Bognor, Horsham and Worthing.
Someone to talk to
Parent-led general support “What I found most important was finding the right person on your wavelength, who you actually can get on with as a person and has got the added thing of having an appropriate special needs child. I was lucky - I had this girl down the road, but she’s moved now, and I really miss her.” There are a number of general support groups and projects in West Sussex for parents of children with special needs, for example, PACSO run coffee mornings for parents based in Bognor, Chichester and Midhurst, whilst the Springboard Project in Horsham run a befriending service, for parents of children recently diagnosed, called Parents Plus that is delivered by other parents of children with special needs. Elsewhere in the county Kangaroos in Haywards Heath hold family days out which provide the opportunity to meet other parents whilst Understanding Differences hold regular drop-ins for parents
in Horsham and Crawley. Meanwhile, St. Matthew’s Church in Worthing run a parent and toddler group called SNAPS that meets on the 1st & 3rd Friday in the month (term time). West Sussex now has over 50 children and family centres. We know that many parents use their facilities to support their child and to meet other parents. You can find details of your local centre at the back of this book. Nationally, Contact a Family (CAF) operates an online forum at www.makingcontact.org The forum enables families affected by disability to make contact and talk about issues that affect them. We know that a lot parents also meet and stay in touch using Facebook.
Community support groups There may be parent groups in your area that are not specifically for parents of children with special needs. If you are a single parent, Gingerbread and Single Parents Information Network (SPIN) may be able to put you - 17 -
in touch with others in similar circumstances. Working Families are another useful group. They produce a factsheet, Waving Not Drowning’ for parents trying to combine paid work with caring for children with disabilities.
Support from professionals There are many local and national organisations that can offer information and support to parent carers. Some cater for certain disability groups; others are for anyone who may be caring for a child with special needs.
Home-Start This is a government programme designed to support families with at least one child under five. The programme provides trained volunteers who are usually themselves parents to provide emotional support, practical help and friendship to other parents of young children. Volunteers will visit families for a couple of hours per week. There are 3 Home-Starts in West Sussex – Chichester & District, - 18 -
Crawley & Horsham and Worthing & Adur. Their contact details are listed at the back of this book.
General support ICIS, Wellspring, the West Sussex Parents Forum and our own Parent & Family Care Foundation are the main sources of information and advice for parents in West Sussex. Wellspring also produces a newsletter that is sent home in children’s school bags. If you’re not receiving the newsletter you can find Wellspring’s details at the back of this book. A very welcome and recent addition to the provision of information for disabled people and their families is the website Reach Out which is managed by ICIS. They have a specific section on the site for parents, families and carers. For further information visit www.reachoutwestsussex.org.uk. In time the Parent & Family Care Foundation hope to deliver a fully staffed information and advice service for parents and families. This book is the first step in that
Someone to talk to
direction. We also deliver training to parents and families so it’s worth joining our mailing list or checking on our website for what’s coming up. Nationally, CAF offers information, advice and help for parents of disabled children. They produce information sheets on a variety of topics, a quarterly magazine and a directory with information about specific conditions. They also have a helpline the number for which is at the back of this book. Their website is www.cafamily.org.uk.
Bereavement Some parents live for years knowing that one day their child will die. Some of you may have already lived through that. When a child dies or is terminally ill, it is a desperately painful time for families. Other people don’t know what to say and, scared of saying the wrong thing, end up saying nothing at all. Those of us who have lost a child, however, often want to talk about them - we long for people to mention their name and share memories.
Frequently our lives have been very closely involved with our child’s physical and medical care and suddenly this has all stopped. There’s a huge gap. Some of us found it invaluable to talk with other parents who had had the same experience, or just someone who could understand our feelings. Did You Know?
ICIS manage a website called www. reachoutwestsussex.org.uk which has a wealth of information and resources for parents and families
Hospices Children who are terminally ill and need nursing care or have complex physical and medical needs, may spend time in a hospice, an environment in which most children can feel safe and receive specialist care. Hospices are bright sunny places. Parents often find the support they offer is invaluable. The main hospice used by families in West Sussex is Chestnut Tree Children’s Hospice near Arundel. This is an excellent facility with highly trained staff - 19 -
who are highly experienced in caring for children who are terminally ill or have complex needs. They also are highly skilled in caring for carers and amongst other things, run a bereavement counselling service.
Professional support for bereavement
and help them get through the pain of their loss. Each branch also has a 24 hour telephone answering service whilst the MidSussex branch has a telephone counselling service. The MidSussex and Worthing branches also run friendship groups. “I recently went to a thanksgiving
For parents in this situation, there are a number of sources of support that may prove useful. The Child Bereavement Charity runs a confidential help line that gives support and guidance to bereaved families. Their website also has literature and resources and an online forum where parents can share their experiences. The Child Death Helpline, run by bereaved parents from Great Ormond Street, provides home visits, a befriending service and a booklist. Cruse Bereavement Care has 3 branches in West Sussex (Chichester & Arun, Mid-Sussex, Worthing & District). They have over 70 trained bereavement volunteers who visit the bereaved in their home weekly - 20 -
service for a young disabled child. It was lovely - showing what he liked to do, painting, music, and so on. At the end his five classmates, all in their wheelchairs, each let off a balloon outside to say goodbye. It was very special.”
Practicalities As if coping with grief isn’t enough, there are funeral arrangements to sort out too. Funeral directors DON’T charge for babies’ and children’s funerals, some even provide extra support for families who have lost a child. You may also want to create a ‘memory box’ containing maybe a lock of hair, first teeth, photographs, a handprint or your child’s special toy. It may also help to get your child’s friends and siblings together to celebrate their life.
Someone to talk to
Counselling “The ability to speak to someone you know will listen and know what you’re talking about - that’s the most important thing for us, to be listened to and to be taken seriously. I know if we didn’t have that we wouldn’t survive.... it literally keeps our family together.” If you think you’d benefit from a place where you can talk openly with one person about how having a child with special needs is affecting you, you could think about counselling. There are various kinds of services available in this area. Help may be short or longer term, it may be free or involve payment. The Parent & Family Care Foundation have established a free counselling service for any parent of a child with special needs in West Sussex. We provide 6 free sessions with a professional counsellor accredited by the British Association of Counselling & Psychotherapy (BACP). There is no charge for the service although we do ask parents to pay for any sessions they miss.
There are also a number of generic counselling services in West Sussex, some of which provide counselling based on a client’s ability to pay. Offington Counselling Service in Worthing work in such a way as do the Arun Counselling Centre and Chichester Counselling Service. Meanwhile, West Sussex Carers provides telephone support and face-to-face support for carers from a volunteer counsellor. Did You Know?
The Parent & Family Care Foundation pay for any parents of children with special needs in West Sussex to attend 6 free sessions of professional counselling
Relationship counselling It’s sadly the case that having a child with special needs can lead to much unhappiness between parents, and even the breakdown of relationships. Sometimes it’s because it’s so hard to spend time alone together. Maybe one partner has to devote so much energy to dealing with appointments and so on that the other partner feels left out. If you’re beginning to see warning - 21 -
Children & Family Centres
signs this is happening to you, there are groups that can help, for example, RELATE who have two branches in West Sussex. The flip side of that is that some of us found the opposite effect; that as a couple we were brought closer together. “We’ve found weekends away absolutely essential. We save up, we go to a hotel. Our carer has Jane, and somebody else has to have the others.”
Family work Most of us have found that having a child with special needs creates stresses and strains within the whole family. Sometimes getting help which focuses on the needs of everyone in the family can be beneficial. Your family could be referred to the Child and Adolescent Mental Health Service (CAMHS) to see if you could get family therapy. Families are usually referred to CAMHS by a professional such as a GP or social worker but you can refer yourself. Some of the Child Development Centres also have Family Support Workers who work with families of children often referred by other CDC team members. - 22 -
If you have a child who is under five, many of the services you might need are located in your local Children & Family Centre. These include integrated care and education for under 5’s, family support and out-reach to parents, child and family health services, a base for child-minding and links with Jobcentre Plus. There are 55 children and family centres in West Sussex. You can find their contact details at the back of this book. A number of the children and family centres have projects and services designed specifically for children with special needs:• Angmering Children & Family Centre run Saturday morning play sessions for children with additional needs and their siblings. They also run a number of other events and outings • Bognor Regis Nursery School & Children’s Centre has included specialist equipment to enhance children’s play and learning • Chichester Nursery School Children & Family Centre run a parent and toddler group
Someone to talk to
for children under 5’s that meets monthly. They also run a Singing with Signs sessions every Thursday morning for children and adults who want to learn sign language. Sessions are run by a regional Makaton tutor East Grinstead Library & Children’s Centre has established a support for parents of children with special needs and runs music therapy sessions Findon Valley Children & Family Centre run Saturday morning play sessions for children with additional needs and their siblings Horsham Nursery School Children & Family Centre is establishing a sensory room which will be available for bookings for half hour sessions Kingston Bucci Children & Family Centre run a stay and play drop-in session for children with special needs under 5 and their parents/ carers. They also run an afterschool play club called Whizz Kids for children with physical disabilities Langley Green Children &
Family Centre has a sensory/ soft play room with interactive equipment. Families can book the room for private use in the evening and at weekends. Did You Know?
There are 55 children and family centres in West Sussex. Contact the Family Information Service for your nearest centre
Toy Libraries There are a number of toy libraries in West Sussex that are located within Children & Family Centres. There are 8 specialist toy libraries being established at the following children and family centres: - Petworth , Lancing, Felpham, Kingston Bucci, Findon, Southwater, Footprints – Lyndhurst Road, Worthing, Langley Green, Mid Sussex Centres. To find your nearest toy library contact the Family Information Service, the contact details for which are at the back of the book. Another good place to ask about toys to help your child’s progress is your local Portage office. Again, their details are at the back of this book. - 23 -
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3. Survival Strategies As you’ve no doubt gathered by now, the road ahead may be bumpy at times. Getting the best for your child can take a lot of effort, but it can be done. Here’s a selection of our top survival tips for maintaining your sanity and getting what you think is best for your child.
Talking to professionals “All parents have this worry: ‘Are they doing the best by their children?’ It’s even more compounded when you know if you don’t get the best for your child they’re not going to get anywhere on their own.” Write it down: • Get a notebook or diary, you wouldn’t believe how much information you start to collect • Note the date of any telephone calls you make or letters you receive, and keep copies of anything you send • Take notes of every conversation, if you can quote details of a previous conversation it
can refresh a fuzzy memory very well • Start a file where you keep copies of all the letters and reports you get about your child On the phone: “Always chat up/be extra friendly with receptionists and secretaries, they are your gateway to the chief!” • Make sure you’re talking to the right person, or persist until you get hold of them; don’t be put off by someone being hard to get, note down when they’ll be back and call them on time • Try to be patient, no-one else is as emotionally involved as you are, but be prepared to be firm if necessary • Always be friendly to receptionists and secretaries and let them know how much you appreciate their help • Get to know who’s who in the place you’re calling and go to the top if you need to • Try to be specific, sort out your thoughts before you ring
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At appointments: “When you’re presenting your case, like at social services, sometimes you can just get so upset, because you’re going through all the worst things, aren’t you? Trying to explain to somebody what it’s like, it can be really upsetting.....” • Take someone with you for support, and get them to take notes • Ask the professional if you can have copies of any notes taken • Don’t be afraid to ask questions, especially if you don’t understand what’s been said. If you’re still confused, ask again • If English is not your first language, ask for an interpreter • Be prepared for clinics running late and take things to occupy your child or ask if your child can be seen before others who are more able to wait • Choose who is present and say no if onlookers might make you or your child feel uncomfortable - 26 -
• Have faith in your own experience of your child, you know your child better than anyone else And afterwards: • Follow up appointments with questions in writing if you think of them later on • Ask when you can expect replies to requests - make a note in your diary and follow it up if you haven’t heard by then • Make sure you meet deadlines, it’s in your interests to think ahead • Make sure professionals know if you’re unclear or unhappy about anything, a brief word or telephone call may be all that is needed to sort things out • Let people know in writing if things start to go badly wrong; don’t wait until you’re at crisis point • Don’t feel bad about changing specialists if you don’t get on or feel their approach is wrong for you or your child
“I complained to the consultant • Remember, not every minute about the way I was treated in hosof your child’s time has to be pital. I wrote this great long letter, filled with therapy; do things and I was so impressed with myself you both enjoy without feeling afterwards, because all the grievguilty ances came out, and I thought ‘Oh • Find out about your child’s God, she’s never going to speak to condition; national organisame again’. But I sent it off, and she tions can give support, advice, was excellent, and it never hapand perhaps information on pened again...” the latest research into your child’s condition Did You Know? • Ask your support group to In a survey of 2,000 parents conhelp. Remember, they’ve ducted by Contact a Family 76% of heard it, seen it, and been respondents said they had suffered there before. They may be from stress or depression able to go to meetings or reviews with you, or write letters of support for you. Looking after your child Use them • Explore financial help, don’t “I just found that you do everyfeel embarrassed about askthing. Everything that came: “Yes, ing for it; not all benefits are she’ll do that, oh yes, we’ll go to means tested that, yes, we’ll do that”. I tried to carry on doing everything and then • Ask other parents about their experiences, they will often I couldn’t manage, really. But then be your best source of inforit needed someone else to come in mation and say “It’s all right, actually, you • Teach your child to be as indon’t have to do all these things, dependent as possible, it will and Alex will be perfectly fine if she make your life easier in the doesn’t do these things”... I felt she long run needed so much input.”
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“Rose is good now, she takes her own medicine, and she has done for two years, because she was on such frequent doses. Looking ahead, the only way to get through it was to teach her to do what she could as a normal thing, every day.” “I changed my physio - I knew she’d be better off with this other girl. She used to sing a lot and Alex loved the singing. It was a real trauma to change, but I was so pleased that I’d done it, because she was so much better.” Looking after the whole family • Try to do things as a family it’s easy to concentrate too much on your ‘special’ child and get the balance wrong • In the early days or during a crisis, appoint someone outside the immediate family to be the contact person for news; someone else can pass on messages or let people know when they can visit • Don’t be afraid to take the phone off the hook, and enjoy what peace and quiet you can. - 28 -
Did You Know?
Each of the Carers Support Services in West Sussex award grants for carers to take a short break
“It’s looking ahead at a strategy that is not going to crack any one of you up - you can’t have a weekly routine that’s going to leave you exhausted.” Looking after yourself “People think you’re coping, and you’re not. People think because you’re not falling apart all the time and going round in shrouds of grey, they think everything’s fine and hunky-dory.” • Don’t be ashamed to say ‘I can’t do this any more’, ask for help when you need it. • Find someone who will listen and take you seriously, someone you get on with and trust. • Be selfish - if you go under everyone will suffer. Put yourself first for once. • Find ways of pampering yourself - have a massage or some reflexology. It needn’t
be expensive - some organisations provide special cheap (or sometimes free) treatments for carers. • Be prepared to deal with well-meaning but insensitive comments sometimes, even from family and close friends. In time, you’ll find you get better at hearing what people mean to say. • Make sure any groups you join are supportive, if you come home feeling worse it’s not worth it. • Have an interest outside the family, like work/sport/a hobby, having somewhere to go where you’re treated the same as anyone else puts things back into perspective. “I play sport - that’s my stress relief. I think it’s essential, and nobody asks you how your child is - I’m a person! It keeps your mind and body together.”
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Help with money matters
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Help with money matters
4. Help With Money Matters
Disability Living Allowance (DLA)
Many parents are worried about asking for financial help in caring for their disabled children. Some of us didn’t realise how much extra help our child might need, and how much it would cost. Things like extra laundry, special diets, endless appointments, not being able to rely on friends or neighbours to help out, not being able to go back to work: all these things can be a strain on the pocket. So where extra money is available, we’ve found it a great help.
What is it? DLA is often the first benefit which parents claim, and it’s also a passport to other sorts of financial help. It’s paid monthly, isn’t taxed or means tested, which means they don’t take your other income into account. You can claim DLA if your child needs more help or looking after than other children their age because of their special needs.
Often we don’t notice just how much time and energy we put In this chapter we’re going to coninto helping our children learn all centrate on the main disability sorts of skills that other children benefits and sources of financial seem to pick up easily. Some of us help for parents who have a child find it easier to notice the practiwith special needs. There are cal help we give our child than other benefits available to families on low incomes; we list these the ‘thinking’ we do to anticipate at the end of the chapter. We will and manage potential difficulalso talk about the grants that are ties. Both are important, so don’t underestimate the help your child available from government and needs. Lots of things count as charitable sources. help. Did You Know?
Over 50% of unsuccessful applications for Disability Living Allowance are awarded on appeal
Many of our children need help to be understood, make sense of what’s going on around them, or - 31 -
manage difficult feelings. Some children need ‘hands on’ help with everyday activities like dressing, washing and toileting or learning to play or get on with other children. Your child may need you to monitor a medical condition, give medication, help using special equipment, or carry out a therapy programme. Or perhaps your child needs your help to get out and about, or needs you to keep an eye on them to stay safe. Some children need much more help than others of the same age. But even if your child needs extra help with just some of the things we have mentioned, we think it’s worth making a claim for DLA. If your claim is successful DLA is payable in two parts. There are care and mobility components: you can claim either or both and there are rules about what you can claim. The care component You can claim this if your child needs help with ‘personal care’, that is, looking after themselves and this includes things like keep- 32 -
ing safe and communication. You can claim this part of the benefit at any time, as long as your child has needed the extra help for at least 3 months and will continue to need that help for at least another 6 months. There are three rates at which it can be paid: • The lower rate: if your child needs some help during the day • The middle rate: if your child needs more help during the day or at night • The high rate: if your child needs help day and night The mobility component You can claim this part of the benefit if they need extra help with getting around. There are 2 rates for this: The higher rate: if your child’s ability to get around is severely restricted by their disability. It is payable to children from the age of 3 who are unable to walk independently. If your child is reaching 3 and already receives the care component of DLA at the higher rate, you should be contacted and
Help with money matters
asked if you wish to make a claim for the mobility component. The lower rate: if your child needs someone to keep them safe or help them find their way around. It is payable to children from the age of 5. Many primary age children are still learning how to get about and stay safe on streets and in parks near home. To get this you will need to show how much more help your child needs than others of the same age. More about the higher rate mobility component You may not have to pay Road Tax on the vehicle used by your disabled child if they are awarded the higher rate of the mobility component. You can get a VED (vehicle excise duty) exemption form from the Disability Benefits Unit dealing with your child’s claim. You will need a Certificate of Exemption from Road Tax as proof that you are entitled to a ‘tax exempt disc’ from the DVLA. Technically the car is only exempt while it is being used solely by or for the purposes of your disabled child. This doesn’t mean
your child has to be in the car. In practice, as long as the car is used ‘substantially’ for your disabled child, you needn’t worry. Your child will be entitled to a Blue Badge. This allows the holder to disregard some parking restrictions, making it much easier to park very close to places you are taking your disabled child. West Sussex are not obliged to provide Blue Badges to disabled people not on the higher rate of the mobility component of DLA. In these cases, it’s worth asking your child’s consultant if they will support your application. It really helps if they can. The Parking Officer will always write to your child’s GP. So, to be sure they have a good grasp of your child’s needs, ask that they are copied into the letter from the consultant. The badge is also available to families with children under two who, because of their medical condition, need to travel with bulky medical equipment or be close to a vehicle for emergency medical treatment. - 33 -
If your child has a Blue Badge, take care to stick to the rules about its use. Display the badge back to front, or with the expiry date hidden and you are likely to get a parking ticket. And remember, if your child is not in the car, it is an offence to display the badge, unless you are on your way to pick up your child, or you have just dropped them off. You can download a Blue Badge application form from the county council website or by phoning 01243 77653.
your child’s age, so that you are sent the right claim pack. The application form you need, DLA1CH, is different from the one for adults. If your child is nearly 16, expect to fill in an adult claim form.
You can also use this part of your child’s DLA to lease or buy a car or a wheelchair, under the Motability Scheme, which we tell you more about later.
For both the care and mobility parts of DLA, you have to show that your child’s needs for care or supervision are ‘substantially in excess’ of the needs of other children the same age, who do not have an illness or disability. It’s a good idea to send supporting information from professionals working with your child, because whatever you say needs to be backed up!
How can I get the forms? You can download the forms by searching for DLA at www.direct. gov.uk. You can also applying online at the same website or at www.dwp.gov.uk/eservice. Alternatively, call the Benefit Enquiry Line on 0800 882200. Be clear you are claiming for a child and not yourself. Tell them - 34 -
Did You Know?
As many as 60% of families of children with disabilities are not claiming Disability Living Allowance. Are you one of them? (Source: Contact a Family)
Making a DLA claim
The forms are long and detailed and it’s worth getting support to fill them in. Ask a friend to help. Other parents who have children with similar problems can be a
Help with money matters
great source of information about what to say and what not to say. “It’s daunting and you need someone to help you who knows what they are doing “ Tips • Set aside at least 5-6 hours to fill in the pack and give it a high priority. Awards are made for 2-3 years at a time and most are worth several thousand pounds a year, so it’s worth finding the time to get it right! • Remember it will be read by someone who isn’t familiar with your handwriting so try to keep it legible but don’t worry too much about spelling or writing in complete sentences. If you make a mistake, cross it out rather than using Tippex. • Look at all the most recent reports you have about your child and read through them. They can often help you understand the underlying reasons why your child, for example, appears clumsy or ‘not to listen’.
• Tick boxes on every page but don’t bother filling in pages that aren’t relevant. When there is plenty to say, fill up the box. If you run out of space, write in the margins or add extra sheets. • Don’t underestimate the help your child needs; think through the extra sorts of help they need compared with other children of the same age, this is what matters. “I got so used to helping her I had forgotten that other children her age could do these things for themselves” • As you fill in each page describe what happens at mealtimes, bath times, bedtimes, at the shops, on public transport, etc. Say exactly what help or supervision you give. Say what would happen if your child didn’t get this help. It might feel too painful or too ridiculous to share, but these three steps are key to making a strong case. • It can help to make comparisons between younger, able friends, siblings and your - 35 -
disabled child. Include examples that illustrate the problems; maybe where your child has misread a situation or been misunderstood or when your child hasn’t had the help they needed with a practical task, or were left unsupervised • And don’t forget about glasses and hearing aids, we often forget these are equipment too. How often are they lost, mislaid, need adjusting, repairing or cleaning? • Write about the bad days, even if some of what you say feels very hard to share. If you gloss over difficult times you can guarantee your child’s behaviour will deteriorate the day after you send in the form. On the other hand don’t waste space saying what your child can do; this isn’t the time to reveal their skill at the piano! • Remember the claim needs to be strong enough to convince someone who has never met your child. Read it back to yourself; is there anything you haven’t said? What you read may seem repetitive, - 36 -
don’t worry, it’s meant to be. The Department for Work and Pensions (DWP) will be looking for common threads running through your claim. How others can support your DLA claim The DWP will also want evidence from other people who know your child. So be prepared! Check that all professionals whose details you include know you are claiming; the DWP may well contact them. GPs are very often contacted but may not know as much about your child as consultants, so it may be worth making an appointment to put them in the picture. The DWP will usually contact your child’s school. Get a supporting statement from a professional who really knows your child well. Whoever you choose must say how much more care or supervision your child needs and why. It’s not enough just to give a diagnosis, every disability impacts differently on individual children. Remember, this person may have only seen your child in a clinic or at school.
Help with money matters
Make sure they don’t have to guess how things are at home; ask them to read what you have written, or give them a summary of the main points you need stressed.
tary evidence that supports what you are saying. Things like medical reports, speech and language assessments, psychological advices and statements of special educational need are often useful.
Getting supporting advice for problems at night can be difficult. So keep a diary for a week or two. Show it to your GP or your child’s teacher and include it with the claim. It helps if others are able to say that you report broken nights. So if you have asked your GP for help with tiredness or your child’s disturbed nights, or if your child falls asleep or is irritable at school and their teacher can link this to your reports of broken sleep, ask them to include this in their advice.
You should keep a photocopy of all the papers so that you have a record of what you have written. Keep the copies in a safe place; you will need to refer to them if you want a decision looked at again and when the claim is reviewed or if the original gets lost in the post.
Don’t rely on a professional to fill in their part and send it off, as it’s unlikely to be given a high priority. Ask for it back by a particular date and make an effort to drop it off and pick it up yourself. Don’t trust the post; this is your only copy and you’ve invested a lot of time on it. If at all possible, send supplemen-
Consider returning your claim by special delivery. Doing this is expensive but it’s worth the peace of mind. You get a receipt, the claim can be tracked and the DWP has to sign to say they’ve received it: claims can get lost in the post. If you hand a claim into a Jobcentre Plus, ask for a receipt. Getting support to fill in the DLA forms It can be really hard in the early days to make sense of how a child’s diagnosis might have an impact on everyday life. Many - 37 -
disability organisations offer useful advice about claiming DLA for children & young people with specific illnesses or disabilities. Their websites can be good places to visit, especially if your child’s needs are just emerging. Many of these groups are listed at the back of this book. “I went to the Citizen’s Advice Bureau. There’s a way of filling out these forms and the help I got with specific words and phrases made all the difference.” Many of us find filling in the DLA forms a rather depressing experience because you have to concentrate on what our child can’t do rather than what they can! But remember this is just a snapshot in time and your child will make progress in the future. So when you’ve finished, make some time to talk about and enjoy your child. What to do if your DLA claim is unsuccessful If your application for DLA is turned down, don’t give up. Over 50% of decisions are overturned if you ask for what’s called a
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re-consideration. If the decision stays the same, you can appeal. If you think you should be paid it at a higher rate than they have offered you, you also have the right to ask for a review. This sort of review is called a revision. You can also ask for a review if your child is receiving the benefit at a lower rate and his or her condition alters and they need more help. Where a decision was correct at the time but circumstances have changed, this sort of review is called a supercession. It’s important to seek advice before asking for a decision to be looked at again. If you are unsuccessful, you can still appeal to an independent tribunal. If you don’t want to attend in person, you can submit an appeal in writing or send a representative to act on your child’s behalf. But if you have a fighting spirit and find it easy to speak from the heart, it’s worth thinking about doing it yourself. The form you need to appeal is called GL24. Call the DLA and Attendance Allowance Helpline on 08457 123456 and ask them to send you one.
Help with money matters
There are time limits for reviews and appeals so always get advice as quickly as possible. If you are on a very low income your local Citizen’s Advice Bureau may be able to help you with an appeal. You could also call Community Legal Advice on 0845 345 4 345. Did You Know?
There are as many as 2,500 carers in West Sussex not claiming Carer’s Allowance that they are entitled to. Are you one of them? (Source: Carers UK)
Carer’s Allowance If your child gets DLA for personal care at the middle or high rate you may be able to claim Carer’s Allowance (CA). It’s a weekly cash payment for anyone who spends at least 35 hours a week providing unpaid care for someone with an illness or disability. If you work full time and someone else cares for your child they can claim the benefit instead. CA is taxed. At the time of publication, carers may earn up to £100 a week after expenses doing other work and still claim. It’s worth claiming CA even if you
are on Income Support, because although CA is deducted from your Income Support, claiming it protects your pension and makes you eligible for a Carer’s Premium, so overall you will be better off. How do I get it? You can get claim packs from The Carer’s Allowance Unit on 0845 6084321. You can claim online at www.dwp.gov.uk/carersallowance. This is straightforward because you are only asked for basic information. The on-line format takes account of your answers and skips irrelevant questions. You are sent a paper copy to sign and return. Making a claim The claim pack is simple and easy to understand. You are guided to relevant pages and it only takes a few minutes to complete. You can make a claim when you apply for DLA and as long as you meet the qualifying criteria, CA will be paid as soon as an award for DLA is made. Claims can be backdated up to - 39 -
three months, so you can wait and make a claim for CA once your child’s award for DLA is agreed. If your child’s claim for DLA is turned down, or they are only awarded the low rate of the care component, apply for CA as soon as you can, while you challenge that decision. This ensures that your backdated CA is safe if the decision is revised.
Child Tax Credit (CTC) Child Tax Credit (CTC) is designed to help families with dependent children. If you are on a low or middle income you are likely to be entitled. You can claim for any children under 16. As long as you are responsible for them and they usually live with you, you can also claim for children up to 20 if they are in full time education, studying up to A Level (or equivalent standard) or they are in unpaid, work-based training. This includes children who are away at school in term times. If you have a child who gets any rate of DLA, whether this is for - 40 -
care or mobility, the CTC you claim will include an extra Disabled Child Element. If your child gets DLA at the high rate for personal care, any CTC will include an additional Severe Disabled Child Element. These credits are in addition to all the tax credits available to other families. “The extra tax credits meant I could cut down my hours and spend more time with the kids” CTC is more generous than other benefits. Maintenance payments, fostering and adoption allowances and most other benefits, including Social Fund payments, are disregarded as income when HM Revenue & Customs (HMRC) calculate your entitlement to tax credits. An exception is Carers Allowance, so be sure to tell HMRC if you get this. Student loans are disregarded, as are any student grants relating to dependent children, books, travel or equipment. If you’ve only just found out about Tax Credits and your child has been getting DLA for some time, it’s worth telling HMRC that you may have been entitled
Help with money matters
to Tax Credits and giving details. CTC has more flexibility, than other benefits to look retrospectively at your entitlement. If your child’s entitlement to DLA changes, this may make a significant difference to your child tax credit award: so it’s in your interests to tell the Inland Revenue about this as soon as possible. How do I get it? Telephone HMRC Tax Credit Help Line on 0845 300 3900. Parental leave Parental leave is unpaid. But it gives parents the right to time off work to look after their children and is more generous for parents of disabled children. It’s even more important to strike a better balance between work and home when you have a child with special needs, and in order to give more time to family commitments. Employers and employees can agree their own terms and conditions for parental leave. It’s worth checking your own contract;
it may be more generous than employers are legally required to offer, for example it may include a few days paid parental leave. If there is no mention of parental leave in your employment contract, the legal minimum automatically applies. This is called the Fallback Scheme. For every child in your family getting DLA, each parent can take up to 18 weeks parental leave. Although any parent can only take up to 4 weeks a year, the leave can be taken on a daily basis, rather than a week at a time and it can be taken at any time up until your child’s 18th birthday. This is a real help if you’ve ever felt uncomfortable asking for time off to get your child to medical appointments, to attend Annual Reviews or lovely stuff like school plays and concerts! To take parental leave, you must have worked for your employer for at least a year. You must also give your employer at least 21 days notice in writing. In some circumstances your employer can postpone your leave for up to six months, if they feel your absence would significantly disrupt their - 41 -
business. If this happens to you ring the Working Families free legal help line for advice: 0800 013 0313.
a child who is in the care of their local authority.
You can get an application form and guidelines by writing to the Family Fund at PO Box 50, York YO1 9ZX, or by ringing 0845 130 4542. Alternatively, you can apply online at www.familyfund.org.uk.
How do I get it?
The Family Fund Many parents have found the Family Fund a great help for oneoff payments for specific things like washing machines, fridges, beds, outings and holidays in the UK or even abroad. The fund is for families on low incomes who have children under 18, with severe disabilities. Each year they give over ÂŁ33 million in grants to over 50,000 families. Eligibility depends on the family in question being in receipt of certain government benefits, for example, child tax credit, income support or housing benefit. Although the fund considers most requests, they give priority to people whose social or financial needs are greatest. They cannot help fund equipment or services that are the responsibility of health or social services to provide. You cannot get help for - 42 -
You may want to ask a professional to support your Family Fund application. When you apply, you will need to give details about your child and what help you need. The fund will ask for details of your income and savings and may contact your consultant for more information on your childâ€™s disability. The first time you apply, a family support worker will arrange to meet you and your child at home, to get a better picture of your needs. The meeting is informal and sometimes they suggest things they Did You Know?
The Family Fund award families of children with special needs over ÂŁ33 million in grants every year (Source: Family Fund)
Help with money matters
help with that you may not have thought of. Discretionary Social Fund The Social Fund award Community Care Grants, Budgeting Loans or Crisis Loans for needs that are hard to meet from weekly benefits. If you are on Income Support, you could get a loan or grant towards the cost of a specific piece of household equipment or furniture. It can be very hard to get money from the Social Fund; there is no legal entitlement, payments are discretionary and the budget limited. Always apply for a grant rather than a loan if you think you are eligible. Although the loans are interest free, budgeting for repayments can be difficult. There are different eligibility rules for each sort of payment. You can find out more from your local Jobcentre Plus. Council Tax - reduction for people with disabilities
especially for your disabled child, your council tax bill could be reduced to that of a house in the band immediately below yours. If your house is already in the lowest band (A) you get a reduction of 1/6th of your bill. The sort of adaptations that might make the difference are: • Additional space for a wheelchair to be used indoors (like widening doors, corridors, removing partition walls) • An extra room to meet special needs (for example, a downstairs bathroom/toilet). The Council Tax Discount Scheme If there are fewer than two adults resident at your home, you can get a discount on your council tax bill. This is worth 25% if there is one adult and 50% if there are no applicable adults. Not all adults are counted for council tax purposes. Young people aged 18 or over getting DLA at the middle or highest rate for care are disregarded. So it’s worth checking!
If you’ve had to adapt your home - 43 -
How do I get it? Ring your local council tax office to make an application for a reduction in your council tax band or a discount on your bill. If you have missed out in the past, you can ask for either of these to be backdated to the date they first applied. Fares to hospital You can get help with fares to hospital if you’re on Income Support, or sometimes if your income is very low. Most hospitals have someone who deals with reimbursing fares on the spot. Parents can spend a small fortune getting to hospital, particularly when our children need frequent treatment or can’t travel on buses or trains. Your hospital social worker or the consultant’s secretary should help you find out whether your child can get an ambulance, hospital car or help with taxi fares. When taking your child out of the area for treatment you might get help with travel costs. Ask your consultant to write to the Health Authority - 44 -
for you, making it clear that the journey is a necessary part of your child’s treatment and you should get it paid. The Family Fund will also consider requests for help with travelling costs to and from hospital. “Every weekend, Suzie went up to Oxford and they said ‘Do you want help to pay for travel costs’, because we had to go every week and we said ‘No, it’s all right’. I didn’t really think about it, and they said ‘No, go on, you must - it’s going to cost you a lot of money’, and they went and did it. They were excellent like that ....” Motability Motability is a charity, set up to help disabled people and parents of disabled children buy or lease a car. You can also use your child’s higher rate of mobility component to buy an electric wheelchair. To use the scheme your child must have at least 12 months of their DLA award left to run. For details of the schemes ring Motability on 0845 456 4566 or visit their website at: www.motability.co.uk.
Help with money matters
Charitable Grants Some charitable organisations make grants for specific purposes like holidays or buying a special piece of equipment. We have included a directory of grantmakers at the back of this book. However, there are bound to be more so if you know of any and would like to share them with us and other families, please let us know. There is a knack to securing grants from charitable funders. The following are just a few tips when applying: 1. Most grant-makers produce guidelines (often available online) detailing what they give to and just as importantly, what they don’t support – make sure you read these guidelines carefully before applying. 2. Remember that each funder has their own interests and as a result, a one size fits all application that you send to several grant-makers is bound to fail – instead, tailor your application to suit the criteria of each funder.
3. Avoid using jargon or technical language – grant-makers are notorious for their love of plain English! 4. Ask another parent or perhaps a professional to read your application before you send it off – if they have trouble reading it then so might the grant-maker. 5. Don’t be over-emotional or rage against injustice – state your case in detail and provide as much information as you can in support of the application 6. Explain what else you have done to secure for your child the things that they need including requests made to statutory services 7. Even if it is not required include a supporting letter from a professional, for example, a doctor, social worker or teacher – whichever is the most appropriate. 8. Try and make your application as presentable as possible – the more presentable and easier to read your application the more likely you are to be successful 9. Make sure you send everything - 45 -
the grant-maker requests – if you don’t your application might be delayed or worse still, ignored 10. Remember that competition for grants is fierce and many good applications are turned down simply because of demand – so make your application as strong as possible but don’t blame yourself if at first you don’t succeed.
to ensure individual practitioners are able to meet a child’s individual needs. Where appropriate, as part of FIRST support, inclusion funding is made available to settings in line with criteria to enable the needs of individual children to be met. Funding is also made available to supply mobility equipment where this is recommended by health professionals to support the child’s inclusion.
Parents or childcare practitioners interested in the support available from FIRST should contact them at the number listed at the back of this book.
West Sussex County Council has support and funding available to enable children with additional needs to attend mainstream childcare and nurseries. FIRST (Facilitating Inclusion Through Reflective Practice, Support and Training) help practitioners make the necessary adaptations to include children with additional needs including access to the Early Years Foundation Stage training programme. They often visit settings before a child has even arrived to ensure plans for their inclusion are in place. A bursary called the Early Intervention Grant is newly available
Direct Payments Direct Payments are a way of giving more choice and control to disabled children and their families about the services they use. Parents can be given money to pay for services for their child, as an alternative to those their local authority offers. You and your child arrange how, when and where support services fit best into your lives. To get Direct Payments your child
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Help with money matters
needs to have been assessed as needing a service. Getting social services to agree that you and your child need support can be really hard. Money is limited, so Direct Payments are only offered to families who need it most. In reality, unless there are exceptional circumstances, this usually means your child has to meet the criteria of your local Children’s Disability Team. When you ask for an assessment of your child’s needs, ask for an assessment of your needs as a carer as well. This won’t get you services for yourself but does give you a chance to explain things from your perspective, and if you are feeling at breaking point, social services should see that you, as much as your child, need a break. After all, if you go under, who else would look after your child? You can use Direct Payments to employ someone to care for your child, or to buy into a local service, like a day nursery, an after school club or holiday play scheme or even a residential short break. But you can’t use it
to buy in a service run by the county council, or to employ a close relative or your partner. Are Direct Payments for you? Direct Payments are worth thinking about if your child has been assessed for a service but has been on a waiting list and not getting the help they need. They may also be right if you and your child don’t have a say about how the services you use are run and you feel as if you are fitting in with what they can offer, rather than getting your needs met. Finding out more about Direct Payments In West Sussex, Direct Payments for parents are managed by the county council. If your child isn’t currently getting any services and you think they may be entitled to some, ring the Child Disability Team for your area and ask for an assessment. You can also complete an initial enquiry form online at www.westsussex.gov.uk If your child is assessed as needing a service, you cannot be - 47 -
refused Direct Payments. Local authorities have a duty to offer Direct Payments - the law says they MUST tell you about Direct Payments and support you if you wish to use them. If you are already getting services, your childâ€™s social worker should have told you about this alternative to accepting services run by the county council. Direct Payments does mean extra work but the rewards can be very great. These are some of the issues that worry parents about arranging support for their child. Asking for what you need It makes sense to make a detailed record of how many hours and what sort of help your child needs to do the sorts of things that other non-disabled are able to. Be clear how much of this need you cannot meet and how much of a break you both need from each other. You may need to do this on a daily, weekly or monthly basis but plan it out for the whole year and remember school holidays. This will give you an idea of the number of hours you need. All - 48 -
families have different needs: what other families get is irrelevant. The amount you get should be equivalent to the cost of the service run by the County Council. If there is no council service, you may have to negotiate over how much it would realistically cost to provide. Local authorities MUST make payments that cover the reasonable cost of buying a service to meet your familyâ€™s assessed needs. There should NOT be a standard take it or leave it rate. You will have legal obligations as an employer so the amount you get must cover things like NI payments, holiday and sick pay as well as basic pay. Remember, you really need to negotiate on the basis of a 56week year as anyone you employ has an entitlement to 4 weeks paid holiday and you will need someone else to cover while they are away, and they will need to be paid too! Finding the best people to support your child is really important. They need to be suitably qualified
Help with money matters
and experienced in caring for children with special needs. The best places to start searching are the Family Information Service who have a database of OFSTED registered child-minders. Asking other parents is also very worthwhile. You can’t meet everyone who replies to an ad but if you ask the right questions, you can tell a lot about a person from their application. It’s worth remembering that parents and disabled children and young people have the legal right to disregard discrimination laws. Being an employer If writing a job description, advertising, interviewing and recruitment all feels a bit overwhelming, the Department of Health and the Department for Children, Schools and Families have put together some very helpful guides to make the process less daunting. We think ‘A Parent’s Guide to Direct Payments’ is a very useful and accessible book and it’s free. You can download a copy from the Department for Education website or call them on 0845 60 222 60.
‘My Money, My Way’ is a young person’s guide to Direct Payments and is free from SCOPE. Call 080 8800 3333 for a copy. Locally, the Independent Living Association based in Worthing provide a range of services to support disabled people and their carers including payroll services, recruitment, CRB checks and administration. They also provide a Direct Payment Support Service which offers free information and advice to anyone interested in direct payments. You can contact them on 08456 012399. Another provider of care services to families is Cool2Care, a new “social enterprise” or not-forprofit company that “recruits, screens and trains care workers” to support families of disabled children. They are a national organisation established by the father of a disabled child. Their Sussex contacts are listed at the back of this book. Being an employer is often our biggest worry but it doesn’t need to be complicated. Using as little paper as possible is often best! - 49 -
Because you are not being paid and are just effectively receiving and handing out money you don’t need to act as a business employer.
if this doesn’t make sense in your circumstances.
Managing deductions for tax, National Insurance contributions, holiday and sick pay is easy and straightforward if you use the government’s Simplified PAYE Deduction Scheme on-line. It does all the calculations for you month by month for everyone you employ, you can print off payslips and at the end of the tax year, at the click of a button it files your tax return! To find out how to get started visit or www.hmrc.gov.uk or www.gateway.gov.uk.
Locally, in the voluntary and community sector, Citizen’s Advice Bureau and ICIS offer information, advice and support to claim disability related benefits. The County Council have also employed a Benefits Advisor. For further information contact David Harper, WSCC, 6 Southey Road, Worthing BN11 3HT or email: email@example.com giving your child’s name and age as well as your contact details and you will be contacted to arrange an appointment.
Keeping track of how you spend the money doesn’t need to be a burden either. You will need to open a bank account just for Direct Payments. The law says that local authorities must check that the money you are given is used for what has been agreed. So using Direct Payments does require you to keep accounts and records of how the money is spent. But you should not have to make weekly or even monthly returns
Disability Alliance is a national charity committed to breaking the link between poverty and disability. They publish ‘The Disability Rights Handbook: a comprehensive guide to benefits and services for disabled people, their families, and carers’. Be warned it’s not light reading and gets updated each year, so unless you have a special interest in benefits, it’s probably best to look for it in the reference section at your library.
Where to look for more help with benefits
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Help with money matters
A round-up of benefits for you and your disabled child Circumstance
Benefits & Entitlements
You are responsible for a child: the child is effectively an orphan:
Child benefit, child tax credit Guardian’s allowance
Your child is disabled and: needs help with personal care needs someone to make sure they are safe needs someone to monitor their health has difficulty walking needs help to keep safe when out and about
Disability Living Allowance DLA care component DLA care component DLA care component DLA mobility component DLA mobility component
You are caring for your child and: your child gets at least middle rate DLA and Carer’s allowance you earn less than £100 a week Carer’s premium in you get means tested benefits means-tested benefits Carer’s assessment and care plan You need help to care for your child setting out the services the LA will provide. Direct Payments You wish to organise this help yourself Carer’s special grant You need a break You do not have enough to live on and: are responsible for children a child gets DLA a child gets DLA at the high rate for care
Child tax credit Disability element Severe disability element
You are responsible for a child getting DLA and you don’t work or work less than 16 hours a week
Income support including carer’s premium
are signing on and looking for work
Income-based job seekers allowance inc. carer’s premium
work at least 16 hours a weekpay rent for where you live
Working Tax CreditLocal Housing Allowance (housing benefit) including carer’s premium
You pay council tax
Council tax benefit
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A round-up of benefits for you and your disabled child...cont. Circumstance
Benefits & Entitlements
You pay council tax and: have an extra room in your house to meet your disabled child’s needs there is only one adult in the household or the only other adults are disabled
Disability reduction Single person discount
You need help with your mortgage and: don’t work, or work less than 16 hours are signing on and looking for work
Income support Income based job seeker’s allowance
You get other income related benefits or tax credits; you have needs hard to meet out of your regular income and: have just had a baby are responsible for a funeral have one-off household expenses need fares to visit someone in hospital have an emergency or disaster need help with NHS costs
Sure start maternity grant Funeral payment Community care grant Community care grant Crisis loan Health benefits
Your child is severely disabled and you need help to pay for holidays and days out, household appliances, bedding and clothing, toys and equipment and driving lessons. Your child gets high rate mobility of DLA and you need help to meet the costs of running a car, buy or lease a car or wheelchair park close to your destination
The Family Fund Charitable Grantmakers
Exemption from road tax Motability Blue Badge
Your child needs help at home, or to join in Community Care Assessment. A care leisure activities or have a break: plan saying what services the local authority will provide and how. You wish to buy in this help for your child
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5. Health You may notice that this list of ‘Who’s who’ in the Health Service overleaf is rather long. There are many other health workers than those we’ve listed. Nobody told us so many people could be involved in treating our children. Sometimes it can feel like being your child’s personal manager! We heard a story of someone who counted 22 appointments in two months. Specialists tend to concentrate on just one ‘bit’ of your child; speech therapists obviously focus on communication and/or eating, physiotherapists on movement, and so on. This doesn’t mean they’re not interested in your child as a whole person, but the fact is that parents are the people who know the most about their own children. You see your child everyday, you know what treatments he or she is receiving and you know how they affect your child. You are probably the one constant figure in your child’s care, and you understand them better than - 54 -
anyone else. With this unique knowledge, you should expect to be treated by professionals as a respected and valued partner in all aspects of your child’s care. “Every child with Downs Syndrome is going to be different from every other; every Autistic child is different from every other; how does a professional know exactly where your child’s strengths and weaknesses are, or what exactly their comprehension level is? Tell them.” Don’t forget to use your child’s own ‘Personal Child Health Record’ (sometimes called the ‘Red Book’). All contacts with health professionals (both in hospital and in the community) should be recorded in this, and it helps if you take it to appointments so that you have a full record of who is involved with your child. You can also make notes in it about key episodes in your child’s health. You can get extra pages for your disabled child, from the health visitor.
Who’s who? Audiologist: Associate specialist in hearing problems. Audiometrician: Member of school health team who visits schools and assists in audiology clinics to check childrens’ hearing, carry out hearing tests and review children with hearing problems. Child and Adolescent Mental Health Service (CAMHS): a multidisciplinary team of psychiatrists, therapists and others who specialise in helping children with mental health issues. You can be referred by your GP or another professional, but you can also contact CAMHS direct. Children’s Community Nursing Team: providing direct nursing care and support children with continuing nursing needs or who rely on technical support to stay at home. The team acts as a link between hospital and community services to enable children to remain at home as much as possible. The team can only receive referrals with the
consent of the child’s designated consultant. Clinical Child Psychologists: diagnose, assess and treat emotional and behavioural problems and may offer counselling for families in difficulty. Community Dentists: Sometimes children with special needs are referred to a community dental clinic, where the dentists have additional skills in treating them. They may also make home visits when appropriate. Community Mental Health Workers: community based service to help children with emotional or mental health issues. Can work with children and families at home or in school. Any service that knows you and your child can refer you. Community MH Workers will refer on to CAMHS if they think this is more appropriate. Community Paediatrician/ Community Child Health Doctors: work at Child Development Centres, in child health clinics or in - 55 -
schools. They may also make home visits. Community Services Pharmacist: Has responsibility for ensuring that pharmacy services are provided to community healthcare units. He or she plays an important role in liaising between various agencies that provide care. Consultants: senior doctors who have specialist qualifications in a particular area of medicine or surgery. Consultant Community Paediatricians: have a special interest in developmental and learning difficulties and coordinate the care of children with these problems. Consultant in Rehabilitative Medicine: a specialist with knowledge in artificial limbs, specialist seating, wheelchairs and environmental control systems. General Practitioners (GPs): family doctors. Health Visitors: mainly work with - 56 -
children under five. They should also keep in touch with parents of older children with special needs, but you may have to ask for this. They make development checks on all children at various stages and so can be the first to spot a problem which needs referring to a specialist. They often know about local services, support groups and benefits, and can support applications for re-housing, adaptations to your home, respite care, and so on. (See entry for Paediatric Liaison and Specialist Health Visitor) Occupational Therapists (OTs): help children develop everyday skills such as feeding themselves, getting dressed and playing. They will assess and treat children at home, school or at your local Child Development Centre, offering advice, treatment or special equipment. Opticians: If there are reasons why itâ€™s difficult to take your child to the opticians, you can ask any optician for a home visit. Glasses for children are no longer free, but there is a voucher scheme to help toward the cost: ask the optician for details.
Orthotist: qualified to design and fit ‘orthosis’ (surgical appliances like braces, callipers, footwear, etc.). Orthotics deals with the support and bracing of weak joints or muscles. Paediatric Liaison Health Visitors: Health Visitors based at Chichester and Worthing Hospitals who are children’s nurse-trained with specialist knowledge of children’s conditions. They can supply community health visitors with detailed information relating to your child’s condition. Paediatricians: doctors who have specialist qualifications in all aspects of children’s health and development. Physiotherapists: aim to help with children’s movement skills and physical mobility. Through activities and sometimes equipment, the development of key milestones, i.e. rolling over, sitting, balancing, standing and walking, are encouraged.
with mental health problems. Child Psychiatrists work with children and young people. School Nurses: work in special and mainstream schools and are responsible for routine health checks. They may be involved in the medical assessment of children at mainstream school and will be involved in the health care of children at special schools where they are available to advise staff and parents. Speech and Language Therapists (SALT): diagnose and treat problems of understanding, communicating and speaking and can also help with swallowing and eating difficulties. Speech and Language Therapists can play an important role in diagnosis and assessment, and in the educational statementing process. Did You Know?
The website NHS Choices contains huge amounts of information about various health conditions and relevant treatments. The NHS Direct website also contains an online symptoms checker
Psychiatrists: doctors with specialist qualifications in diagnosing and treating people - 57 -
Referrals Your GP or health visitor is usually the person to ask if you think your child would benefit from seeing a specialist health professional. Occasionally you can be referred by another professional like a social worker or educational psychologist. If they are reluctant to refer you, it may be worth making a direct approach yourself. Many of the specialists listed above do accept selfreferrals, or may at least provide advice over the telephone. If you have to wait a long time for an appointment and things get worse, go back to your GP and ask them to try to bring your appointment forward. Your GP It’s important to keep up the relationship with your GP, even if most of your child’s treatment is at a clinic. Support from GPs can be helpful if you’re trying to speed up appointments or find respite care. And of course children with special needs get ordinary illnesses, just as their brothers and sisters do.
It’s easy to forget that while specialist doctors are working with children similar to yours all the time, your own GP may only have a few children with special needs in their practice. If your child has a very rare condition, they may be meeting it for the first time. A good GP will appreciate all the information that you are able to give, and respect the skills and knowledge you are sure to acquire. Some parents find it useful to have a different GP from their children, believing it gives them a better chance of being seen as an individual rather than as the parent of a disabled child. If your relationship with your GP isn’t working, it’s worth considering changing to another within the practice or, as a last resort, to another practice altogether. “When Jane was first diagnosed, and we had to go to the GP for medication and stuff, he said ‘Right, now this has all been diagnosed, the Child Development Centre take care of absolutely everything, you don’t need to see me except for medication’. And that was how he
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treated her. And then, when she was really ill with a chest infection, we called him out and he said ‘children these days don’t get chest infections!’ Two days later she was in hospital and it was really serious, so we changed GPs - we had to and we’ve got a really brilliant one now.” Continuing care After diagnosis, children remain under the care of paediatricians until they are 16 or when they leave school. Many children are seen regularly by their local Child Development Centre, the Royal Alex in Brighton, Chailey Heritage, special schools, local clinics or further afield such as a London hospital. Child Development Centres hold regular specialised clinics and groups for young children with developmental difficulties. These are run by various health professionals offering ongoing assessment, support and therapy.
Children with ongoing eye or ear problems might go for their regular checks to their local hospital’s ENT department or to the Royal Alex for more detailed assessment. Children with chronic asthma receive their care locally by consultants with a special interest in asthma and by tertiary consultants from London. You will probably be given appointments to see the paediatrician or specialist at regular intervals, and they should write to your child’s GP each time to keep them informed about progress and treatment. Children with psychological problems will be seen by the Child and Adolescent Mental Health Services (CAMHS) who have teams in Chichester, East Grinstead, Haywards Heath, Horsham and Worthing. You may have to wait a couple of months, although urgent cases do take priority.
Chailey Heritage continues to offer a wide-ranging and highly specialised service for children up to the age of 19 years who have complex needs. - 59 -
Rehabilitation services Artificial limbs and wheelchairs can be supplied by Roehampton Hospital. More complex problems are referred on to the Rehabilitation Engineering Unit at Chailey Heritage Clinical Services.
nurses on duty, and, if you are in another part of the country, your child’s medical records will not be readily available. Obviously, in this situation, parents have a vital role in helping staff to help their child.
“I think you can help the Health Service to be more useful to you. We were up at the A&E department three weeks running one time, and I always find if you’re in a place like that where you might have to wait a long time, it’s no use just sitting there waiting and hoping your child won’t have a massive tantrum. You’ve got to be upfront and you’ve got to tell them exactly why your child’s got to be seen next, and they were always absolutely brilliant and got her in there really fast.”
Going to A&E
There are A&E departments at the Princess Royal Hospital in Haywards Heath, St. Richard’s Hospital in Chichester and Worthing Hospital.
In our area, most children who need hospital treatment go to Chichester or Worthing Hospital or sometimes the Royal Alex in Brighton. Sometimes children are sent to St George’s Hospital or Great Ormond Street in London or other specialised centres,
At Chailey Heritage there is a special unit for children with head injuries. They may go there straight from acute care at a hospital, and each child has a completely individualised programme. Did You Know?
If your child is 4 or over and still needs nappies owing to their special needs you can get them provided free by your health visitor
You can’t assume that A&E will always have qualified paediatric - 60 -
where they may spend some time before returning to their local hospital for ongoing care Children who are treated at the Alex may already have been seen by specialists at your local Child Development Centre. Staff from each have plenty of contact with each other, and many of the nurses have years of experience of the conditions treated at your CDC. However, everything you can do to share your own knowledge and help communications will make things easier for your child. You should be able to stay with your child at the Alex in a bed next to theirs or in the parents’ accommodation. Did You Know?
You can reclaim the costs of fares to hospital with your disabled child if you are in receipt of Income Support
“You have to be very specific and say, ‘Look, she really is like this’, and ‘No, she can’t do this’, and ‘If you’re calm, she’ll be calm’, or whatever. Be up front so that they know the problems - spell it out!”
Tips for admissions to hospital • If your child has communication difficulties, write a guide to help staff understand what they are saying. For example, if they use eye signals, how do they indicate for ‘toilet’ or ‘ouch, that hurts’? • Important messages that you want everybody to be aware of could be written out and taped above the bed or on the locker. • Talk to everyone, whenever you can, to ensure that as many people as possible understand your child’s needs. • Don’t forget that domestic staff may see the children more often than doctors and can be very good at making children feel secure. • Don’t assume staff know everything about your child’s condition. The information you gave the person in ENT won’t necessarily have got through to the X-ray department by the time you will see them. • Explain to other children in the ward about your child’s special needs and find out what your child would like them to know - 61 -
“It is your child, it is not the doctor’s child, and if you don’t like the way they’re bandaging him or they’re doing something that you know will upset your child - even though all the other children with that syndrome are bandaged in that way - you say so, you negotiate.” Complementary medicine Complementary medicine includes treatments like osteopathy, acupuncture, homeopathy, massage and aromatherapy. Some parents find these useful for themselves or their child. But it can be difficult to find out practitioner’s qualifications. Other parents are often the best source of information, although some GPs have an interest in this field. Many of the established types have a governing body which can advise on finding qualified practitioners. Occasionally, some complementary medicines are available under the NHS but usually it has to be paid for privately although some practitioners will offer treatment - 62 -
on a sliding-scale of payment. The Dolphin House Children’s Clinic in Brighton, which offers a variety of natural therapies, works in this way. The Belltree Music Therapy Centre in Brighton is a professional music therapy service. Private clients can refer themselves to the service or referrals may be made by professionals such as paediatricians, speech & language therapists, social workers, psychologists. Clients who self-refer will be charged for an initial assessment and for any subsequent treatments thereafter.
Complaints and compensation Patient Advice and Liaison Service (PALS) PALS have been set up by NHS Trusts to provide advice and information about health and related services. They are a useful source of local and national information, and, if they do not have the answers, find the information or the right person to speak to.
PALS also help if you have concerns about local NHS care. PALS staff aim to resolve concerns informally through liaison with the relevant NHS staff. PALS will also advise on making a complaint, what the process involves, and signpost you to the Independent Complaints and Advocacy Service (ICAS) which is independent of the NHS. Complaints about healthcare On 1st April 2009, the government introduced a new process for dealing with patients’ complaints about NHS healthcare. The Health Service Ombudsman has become the second and final point of contact for complaints.
PALS can advise about taking complaints to the Ombudsman. Compensation If you believe your child is the victim of a medical accident and could be entitled to financial compensation, you can take legal action against the person or establishment concerned. A good financial settlement could make a huge difference to a child’s long term future, and to the peace of mind of parents and siblings. However, you also need to be aware of the possible drawbacks. You could speak to PALS first to look at other ways of resolving the issue.
Lawsuits can be very expensive, and unless you win you will not get your costs paid. Legal Aid Anyone who feels their is unlikely to be available. The complaint has not been handled process can take a very long time, satisfactorily can now complain sometimes years. You will need directly to the Health Service plenty of stamina and, above Ombudsman. The change all, good legal advice. If you do removes the need to first decide on legal action, you can complain to the Healthcare Commission, and aims to improve get free preliminary advice from Action for Victims of Medical the way complaints are handled. Accidents (AVMA).They can tell The new process has two clear you whether your case is worth stages: the complainant’s case is pursuing and can also suggest a either resolved locally or taken good solicitor. forward to the Ombudsman. - 63 -
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6. Education “I think parents are only asking for their child’s rights. They’re not asking for the sun and the moon, they’re asking for what it’s the duty of the school or the LEA to give them.” Of all the issues we sort out for our children, education is often the hardest. The laws that exist to ensure children receive what they’re entitled to often end up making the system appear cold and cumbersome. And as so much of the funding and responsibility is now with schools, parents can feel like piggy in the middle trying to find out who is responsible for providing the support their child needs. School goes on for years and years. Parents of all children go through times of wondering whether they’ve got it right for their child, and when that child has special needs, those anxieties never really go away. We all know the importance of education so it’s not surprising that it arouses strong feelings.
“It’s so difficult not to become emotional at reviews and gatherings at school, especially if something is not working right. It’s terribly difficult, and once you’ve become emotional it’s absolutely lost, isn’t it? That’s why it’s lovely if you go with someone you know, so if you suddenly start blubbing they can carry on.” In this chapter we will refer to the Local Authority or LA, previously known as the Local Education Authority or LEA. This is because, like most authorities, West Sussex services for children in both education and social care are part of a unified service. They have also joined together with many local children’s health services to form the West Sussex Children’s Trust.
Who’s who? Casework Officers: work in the SEN team dealing with the statementing process. They are the named individual responsible for co-ordinating information from parents, schools and other professionals
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Classroom Assistants: support and assist class teachers, may give extra help to children with special needs.
Named Officer: the officer in the SEN team who will deal with your child’s case, usually your casework officer.
Connexions Personal Advisers: help young people aged 13- 19 to make choices about further education and training, and support their transition to adult life. Provide support to disabled young people up to the age of 25.
Outreach or Visiting Teachers: based with learning support services or special schools. They travel from school to school to work with children with specific needs. They work with teaching staff, children and parents to help each child.
Educational Psychologists/ Inclusion Officers: advise parents, schools and the Education Authority on children’s special educational needs and play a key role in the statementing process. Education Welfare Officers: work with schools, children and parents on attendance problems. Independent Parental Supporter: A trained volunteer from the Parent Partnership Service who will support you through your negotiations with the LA and your child’s school. Learning Support Assistants: give extra help to children with special needs, individually or in groups.
Parent Partnership Service : An impartial advisory service for parents of children that have special educational needs Special Educational Needs Coordinator (SENCO): the member of staff in a mainstream school responsible for special educational needs within the school. Words they use Advices: the reports provided by professionals and parents as part of statutory assessment. Annual Review Meeting: the statutory meeting and review
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required on an annual basis for children with a statement. DDA Code of Practice: a guide that tells schools how to carry out their duty not to discriminate against disabled pupils according to the Disability Discrimination Act. Early Years Action: term used to describe intervention by pre-schools and nurseries when providing additional activities for a child with additional needs Early Years education: all preschool education provision such as playgroups, nursery classes, pre-schools and day nurseries. Early Years Foundation Stage (EYFS): government framework for the learning and development of children aged 0-5 Early Years Planning and Review Meeting (EYPARM): these meetings take place across West Sussex, once each term, to discuss and plan for young children (pre-school age) who may have special educational needs
IEP: Individual Educational Plan; document which sets out an action plan for helping a child with additional needs meet targets to progress in their education and therefore catch up with their classmates. Learning difficulty: means a child has a significantly greater difficulty in learning than most children of his or her age. Mainstream school: ordinary state school. Note in lieu: a note in which the LA will explain why it has decided not to make a statement. It outlines your childâ€™s special educational needs, so that you and the school can ensure that they are met. School Action: term used to refer to a schoolâ€™s provision of additional support to a child not progressing with the existing curriculum, usually provided from within the school School Action Plus (SA+): term used to refer to the level of support required for a child not - 67 -
progressing with the existing curriculum, despite support provided at School Action. A child at this level is likely to be referred to an external support service such as an Education Psychologist or outreach teacher SEN Code of Practice: a guide that outlines how early education settings, schools and LAs should give help to children with special educational needs according to the law. SEN Tribunal: an independent panel which decides on appeals made by parents against local authority decisions on statutory assessments and statements
detail a childâ€™s special educational needs and the provision he or she should get. Statutory assessment: a detailed examination of a childâ€™s special educational needs, which may result in a Statement. Statutory Assessment (SA) Panel: the panel that makes decisions about whether the Local Authority will proceed in carrying out a statutory assessment that may lead to a Statement or Note In Lieu. Transition Plan: a plan drawn up after the Year 9 annual review of a Statement, setting out the steps needed for the young person to move from school to adult life.
Special Educational Provision: the extra help given to children with special educational needs.
Did You Know?
Special school: a school that offers specialist teaching to children with higher, more complex levels of special educational needs. Such provision can only be provided to children with statements Statement: legally binding document that sets out in - 68 -
All children are entitled to free parttime early education from the term after their 3rd birthday until the term in which they turn five
Some abbreviations you may come across ACE: AR: ADD: ADHD: ASC: BESD: BST: CA: CoP: CYPT: DCSF: DDA: EAL: EMAS: EP: EWO: HI: IEP: IPS: LA: LEA: LSA: MLD OT: PMLD: PPS: PSP: S&LD: PRU SA: SA+: SALT: SEN:
Advisory Centre for Education or Alternative Centre for Education Annual Review Attention Deficit Disorder Attention Deficit Hyperactivity Disorder Autism Spectrum Condition Behavioural, Emotional and Social Difficulties Behaviour Support Team Classroom Assistant or Carers Allowance Code of Practice Children and Young Peopleâ€™s Trust Department for Children, Schools and Families Disability Discrimination Act English as an Additional Language Ethnic Minority Achievement Service Educational Psychologist Educational Welfare Officer Hearing Impaired Individual Education Plan Independent Parental Supporter Local Authority Local Education Authority Learning Support Assistant Moderate Learning Difficulties Occupational Therapist Profound and Multiple Learning Difficulties Parent Partnership Service Pastoral Support Plan Speech and Language Difficulties Pupil Referral Unit Statutory Assessment School Action Plus Speech and Language Therapist Special Educational Needs
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...abbreviations continued SENCO: SENDIST: SLD: SLSS: SNS: SpLD: TP: VI:
Special Educational Needs Co-ordinator Special Educational Needs and Disability Tribunal Severe Learning Difficulties Speech and Language Support Service Sensory Needs Service Specific Learning Difficulties Transition Plan Visually Impaired
Pre-school education If your child’s special needs have been picked up at an early age, you will probably be thinking about suitable pre-school education. Most parents worry about their child missing out in their early years, and are keen they have as many opportunities for play and stimulation as possible. For other parents it is when their child starts at playgroup or nursery that their concerns about their child come into focus. The Special Educational Needs (SEN) Code of Practice tells early education settings how they should identify and support children with special needs, and sets out the process for statutory assessment and getting a statement for pre-school children. - 70 -
There is more detail on this later in the chapter. Facilities for very young children Most children under two can benefit from the facilities available for all very young children, such as parent and toddler groups, children’s centres, music groups or soft play sessions. The County Council run a Family Information Service which has details of childminders, toddler groups and nurseries. However, if your child’s special needs are complex or severe, you may be looking for something more specialised. Some very young children will attend therapy groups at their local Child Development Centre.
Chailey Heritage School has a nursery that accepts children with complex physical needs from the age of about 15 months, although a referral and funding for a place will have to be made and agreed by your childâ€™s GP or consultant. The Dame Vera Lynn School for Parents at Ingfield Manor School near Billingshurst is for families of young children with cerebral palsy and other disabilities. Parents and children learn daily living skills together using the principles and practice of conductive education. The service is free for children from 0-5. The ethos of School for Parents is active learning through play. Children learn alongside their parents using guidelines from the early years curriculum incorporated within the holistic practice of conductive education. The Camelia Botnar Childrenâ€™s Centre, near Worthing, is an under fives centre for children with special needs. They take children with a wide range of disabilities and are equipped to cope with quite complex medical conditions. The Centre is free and you
can leave your child there for the session. Portage The Portage service is a self-help home teaching scheme for parents of babies and children under five with special needs. There are 4 portage projects in West Sussex (Chichester, Crawley, Mid-Sussex & Horsham, Worthing) all responsible to the county council. At the time of writing the Portage services are undergoing restructuring which is not yet complete and may yet be subject to further changes. The service works by a trained Portage visitor comes to your home once a week for an hour and together you work on an activity with your child. Activities focus on things youâ€™d like your child to achieve. A home visitor is trained to devise an individual weekly programme for your child, and the idea is to help children learn by teaching new skills in small steps, ensuring success for the child. The service is free to families and is supervised by an educational psychologist. - 71 -
Other benefits include a regular newsletter, parent events, and toy and book loan service. Parents can refer themselves to this service or by any professional they see. â€œPortage has helped me become more positive about my child and her development. Celia herself is a lot more responsive to everything and really enjoys the exercises.â€? Early Support This is a government programme of support for children with special needs under the age of 5 and their families. The programme provides parents with a detailed pack of information on their childâ€™s disability and other related issues like diagnosis, statutory assessments, etc. More importantly the programme promotes a joined-up approach for the delivery of services which are better co-ordinated and responsive to the needs of children and families. At the time of writing the programme in West Sussex is just getting started. In Horsham the - 72 -
QEII School has established an Early Intervention Assessment Unit to complement their current early years provision for children under 5. Each child within the unit will receive support based on the Early Support emphasis on multidisciplinary intervention. More broadly, social workers across West Sussex are being encouraged to think of themselves as Key Workers who co-ordinate the team around each family. Playgroups and nurseries Most children with special needs are able to go to local playgroups, pre-schools, nurseries and nursery classes in mainstream schools. The Family Information Service has contact details for these in all areas of West Sussex. The SEN Code of Practice covers early education settings that get funding to offer free places to three and four year olds. This means they should have a special needs policy and a member of staff who is identified as the SENCO (Special Educational Needs Coordinator), so you can ask about this when choosing a
place for your child.
All playgroups and nurseries should welcome children with special needs but their experience and facilities vary. Children are entitled to free part-time early education from the term after their 3rd birthday until the term in which they turn five. However, some of us were surprised to discover that due to the cost of additional support, our children with special needs were only able to attend two or three sessions. To combat this, WSCC have introduced something called an Early Intervention Grant to help cover the additional costs and training of settling a child with special needs into a nursery or with another childcare provider. Further information on this support is available from the FIRST team, the contact details for which are at the back of this book.
If your child would find it difficult to benefit from an ordinary pre-school, you may find that a more specialist early years setting would suit their needs. Some of the local special schools also have nursery classes. Chailey Heritage, which is near Lewes, has a pre-school assessment unit. However, in order for a child to be considered for a place at the unit, the LEA has to request it, so seek advice early. Chailey Heritage also runs a day nursery that offers places to a small number of children with special needs. Children are placed in the nursery as a result of a referral from a health professional.
“It was lovely when we joined the integrated playgroup. So many others didn’t want to know us, but all the children there accepted him.”
Ingfield Manor School in Worthing have a Pre-School and assessment service for children with physical disabilities and associated learning problems. The pre-school provides conductive education incorporating the early years’ curriculum. The LEA would have to agree to support and fund a place.
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The SEN Code of Practice and children under five
Early Years Action Plus
Children should be on this level The Code of Practice sets out a if there is input from outside graduated approach to providing specialists to help the early years for children with special needs in setting meet the child’s needs. the pre-school years. This recThis could be from an Educational ognises that children and their Psychologist, a teacher from the needs vary widely. There is an em- Sensory Needs Service, a Speech phasis on early intervention and & Language Therapist or others. on involving parents closely. Again there should be an IEP for your child that is reviewed with Moving between stages is based you. on whether a child is making adequate progress with the level of Statutory Assessment help they currently receive. The County Council can carry Early Years Action out an assessment of your child’s educational needs, and based on If your child has been identified as this they can decide to write a needing extra support or having Statement of special educational special educational needs, the needs. This describes their learnearly years setting should work ing difficulties or disabilities and out a plan to meet your child’s the help they should get to meet needs. They should consult with these needs. The whole procyou and anyone else working with ess of statutory assessment is your child such as health service described in more detail later on staff. They should write an Indiin the chapter. This process efvidual Education Plan (IEP) for fectively only applies to children your child and review it regularly who are two and over and have with you. complex needs, however if the child is under 3, there is no right of appeal if you are unhappy with the decisions. - 74 -
Once your child is two and has significant additional needs, you can request that the county council carry out a statutory assessment. Statutory assessment usually takes six months to complete. Most children can make good progress in their early education setting without a Statement and can access appropriate specialist services like the Sensory Support Team. However, if you feel your child is likely to need an assessment while they are still in pre-school, you may want to get this underway. This may be because your child has severe and complex needs or requires specialist early intervention that cannot be provided in their current setting. It is advisable that you seek the support of the pre-school, and they can in fact request for a Statutory Assessment on your behalf. Did You Know?
The entire process of statutory assessment must be completed within 26 weeks
School age children Choosing a school • Mainstream schools: most children are educated in mainstream schools and this includes most children with statements. As a parent you have the right to ask for your child to be included in a mainstream school even if they have the kind of needs often catered for by special schools. • Special schools: there are 13 special schools in West Sussex, catering for a range of special needs. There are schools for children with complex needs, severe learning difficulties and emotional and behavioural difficulties. Most children at special schools attend fulltime but some may have a dual placement with a mainstream school. • Specialist units: 26 mainstream schools in West Sussex have special units which cater for children with certain types of special needs such as Autism, speech and language difficulties, hearing impairment, specific learning dif- 75 -
ficulties or dyslexia. Children spend some of their time in mainstream classes and some in the unit or facility. • Agency placements: very occasionally a child is placed in a special school not run by the LA. These schools may be in or out of the area, and may be residential. They are a very expensive option for the LA, and are considered only when a child’s needs cannot be met locally. Other specialist services to support children’s learning The county council has a number of specialist services each offering expert advice and information to mainstream schools. Most of these services have a team of specialist teachers who can work directly with pupils but usually concentrate on helping the school staff plan and deliver help for their pupils. Educational Welfare Service (EWS): works with children, parents and schools on issues around pupil attendance
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Ethnic Minority Achievement Team (EMAT): provides improved access to the curriculum for pupils whose first language is not English. Family Link Worker Service (FLWS): aims to remove barriers to children’s learning and includes work on issues like bullying, family illness and difficult behaviour. FIRST Visiting Team: supports mainstream early years childcare providers with training, consultancy and funding to aid the inclusion of children with additional needs Inclusion Support Team: made up of 2 separate teams who work with primary aged children on issues around learning support, behaviour and communications, with the view to greater attainment and inclusion Jump Ahead: an intervention programme for children with motor co-ordination difficulties LEO Online Learning: web based learning for children at Key Stages 3 & 4 who cannot attend
school for medical reasons, who are school refusers or excluded from normal attendance
can’t walk or talk being in a class of 30, and yet, with extra help, it has worked out wonderfully.”
Out of School Learning: also known as Links Colleges, provides short-term educational programmes for children who for a variety of reasons cannot attend school
Parents say that it can feel like there is very little choice if your child has special needs, particularly if their needs can only be met in a special school or unit. Whatever the school, perhaps the key question to ask is ‘Can this school meet my child’s educational needs?’ With mainstream schools this can be hard to assess. All mainstream schools are expected to be inclusive but inevitably some have more experience or enthusiasm than others. Schools are covered by the Disability Discrimination Act and there is more on this later in the chapter, but it is useful to know that the duty not to discriminate also applies to prospective pupils and the admissions process. When you visit a mainstream school:
Sensory Support Team: supports pupils with hearing or visual impairment, or both. Traveller Education: for children from traveller families. Wave 3: targeted approach to children who have needs around literacy, mathematics or other barriers to learning How can I tell if a school is right for my child? “How can you tell if the school is right? You just have to go and see, don’t you, and you know what your child is like. Can you picture them being there? It’s just the same as ordinary children.” “I was worried about my son who
• Talk to the head and try to get an idea of the school’s attitude towards children with special needs, and more specifically to your child’s special needs. Have they had a child - 77 -
with similar needs before? Look at the school’s special needs policy. • Meet the school’s special needs co-coordinator (SENCO). Find out how much time they have away from teaching to devote to special needs work. • Try to find out what resources the school has for children with special needs, such as extra classroom helpers, learning support assistants and visiting specialists. The County Council gives schools extra money to support children with SEN so ask the school about the extra support they could offer. I was ever so upset. It was such a change from what we had imagined for her. But once she got there and we’d gone round with the staff, they were just so thorough in finding out what would suit her, and what they could do to accommodate her. They bought extra equipment for her and were so supportive…They were just tremendous and she’s flourished.
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What should you expect from the school? Most children with special educational needs are supported in their existing school via School Action or School Action Plus. And as most children with Statements stay at a local mainstream school your first priority will need to be working well with your child’s school. Your child’s school MUST: • Provide the name of the teacher responsible for children with special educational needs, usually called the Special Educational Needs Co-coordinator (SENCO) • Explain the way it decides which children need help and how it will be given, in line with the SEN Code of Practice • Describe how it will work closely with parents • Publish a special needs policy and report annually to parents on its implementation • Publish a Disability Equality Scheme and information about access to the school for disabled children and a plan
for how it will improve this access over time • Make reasonable adjustments to avoid putting disabled children at a disadvantage. How the SEN Code of Practice works locally In West Sussex education for children with special needs has been developed in line with the 1996 Education Act and the SEN Code of Practice which strongly recommends that the majority of children with special needs should be educated in mainstream schools. West Sussex’s policy also supports inclusion, which means that, where possible, children should be educated alongside other children in mainstream schools. The Code of Practice sets out a staged approach to identifying your child’s educational needs, which is designed to make sure they get the extra help necessary. It includes School Action, School Action Plus and Statements. This approach recognises that children can have different kinds or levels of special need that need different kinds and levels of support.
The stages are not intended as progressive steps that eventually lead to a statement. Decisions about what level of help a child should get are based on the progress they are making, what help they are getting already and thresholds drawn up by the local education authority. These thresholds describe different levels of needs or difficulties a child might have, matched to levels of help. Working in partnership with parents is considered very important throughout. If you feel that your child has difficulties not recognised by the school or that they aren’t getting the help they need, you should speak to your child’s teacher, the SENCO or the headteacher. One thing you can be certain about is that your child will not be the only one in the school with special needs. In West Sussex, about 1.5% of children have a Statement at present, but many more are receiving extra help at School Action and School Action Plus level. - 79 -
Funding It’s important to understand how the funding system works locally. The local authority share out the money for special educational needs to all the schools in West Sussex each year, and schools are then responsible for how they spend this money. The amount each school gets is based on a formula, which is meant to estimate how many children with special needs they are likely to have. School Action and School Action Plus are the responsibility of schools, and some of the money they get is to support children at these stages. On the other hand, statutory assessments and the provision of Statements are the legal duty of the LA. But this doesn’t mean that schools get extra money if a child gets a statement, because the money they get each year also includes an amount to finance the extra support the vast majority of children with Statements need. For a small number of less common and high cost special needs there may be some additional funding from the LA. You can find - 80 -
out more about what support is reasonable to expect by contacting the child’s school or LA.
The school-based stages The National Curriculum and differentiation Apart from Academies and Free Schools all schools must follow the National Curriculum. Children make progress at different rates and learn in different ways. Teachers are expected to use different materials and activities to suit each child. This is known as ‘differentiation’. It means some children who have difficulties in particular areas or at particular times in their school life will get the help they need via this process, without being identified as having special educational needs. However, if the school decides your child has special educational needs and that they should give your child more or different help, they must tell you. School Action Your child’s class teacher identifies your child’s special educa-
tional needs. Together with the SENCO they should consult you, gather information and find ways in which the school can help. This could be a special programme of work, particular equipment, time with a teaching assistant or teacher, 1-2-1 or in a group. The help the school provides will either be written up as an Individual Education Plan (IEP) with specific targets for your child or on a Provision Map that highlights the particular help arranged. The IEP should be discussed with you and your child, and be reviewed at least twice a year. The school may also discuss your child’s needs at a multi disciplinary or Planning and Review Meeting (PARMS). Children with behavioural difficulties and at risk of exclusion may have a pastoral support plan (PSP) which should be a short term behaviour support plan with clear targets and details of support agreed in discussion with you and your child. Action Plus If your child doesn’t make enough
progress with School Action, the school should consider and discuss with you moving them onto School Action Plus. At this level the school will draw on the expertise of outside specialists such as an educational psychologist (EP), one of the specialist support services (listed earlier in the chapter), or other professionals such as a speech and language therapist. Again, your child should have an IEP or provision map, which is reviewed at least twice a year with input from you and your child. Children can get a significant level of extra support at School Action Plus including one to one help for some hours each week.
Statutory Assessments If your child has received help on School Action Plus but doesn’t seem to be making enough progress, you or the school can ask the LA to make a statutory assessment. One way of checking whether your child is making progress is to closely monitor their IEP. Occasionally another agency like health or social services may make a referral, for - 81 -
example, for a pre-school child with complex needs. It is advisable that you seek the support of the school as they will need to provide evidence of the provision that had already been given up to School Action Plus, including the individual education plans. Once you request a Stautory Assessment, the LA considers whether your child needs a statutory assessment by discussing the case, along with the school evidence, at a Stautory Assessment Panel. They will then make a decision as to whether it is appropriate, to carry out a Statutory Assessment (SA) involving a range of professionals On the basis of this assessment the LA decides whether your child needs a Statement. If the LA decide that it is not appropriate to carry out a SA, then the parent will have the opportunity to invite the Head of the SA Panel to a meeting with the school to discuss the provision that is being currently delivered at School Action Plus level. Dear Parent I understand that you’re about to - 82 -
embark on what has the reputation of being a long, drawn-out and daunting process full of complications! So grit your teeth, head up high and ‘go for it’! At the end of the day it’s essential to get the best education for your child. We’ve just been through it - treat it as a challenge (ahem!) and you’ll come out with the feeling of achievement. But don’t expect it to happen overnight - it does take time, energy and effort on the part of the parent, and the more involved and informed you are in the whole process, the more confident you can be in your approach. Here are some tips: • Have a positive attitude! • Involve yourself as much as you can with the professionals dealing with your case. Don’t be afraid of them - they are normal people not to be avoided -tackle them cheerfully and push them with the urgency of your child’s schooling needs • Always get the name/address of the people dealing with the statement or writing reports on your child • Always take the person’s
• • • • • •
name, date of call and short notes of what’s said if you do anything by phone. Keep a notebook handy for this (I wish I had!) Make sure you ask for confirmation in writing when you are told something on the phone Ask other parents for advice and help Get lots of help and advice don’t be afraid to ask, ask, ask! Parent pressure on people in the services is often moreeffective than colleagues nagging Make sure you are sent a copy of each advice or report. Keep a file just for these Don’t forget it’s your child; you do some of the choosing; you know your child better than anyone
I’m afraid you may have to ring and write to check the Statement is progressing. It’s sometimes useful to fax important letters because then you know they have been received. Make use of email if you have access to this. On the phone be: • Firm • Clear and concise
• Polite and appreciative • Relentlessly cheerful even through gritted teeth! It all helps and will get you much further than blowing your top. Good luck! A N Other Parent How will a statutory assessment be carried out? A casework officer will be responsible for your child’s case and be your ‘named officer’, however they do not make the decisions. Instead, decisions are made by a SA and Placement panel: including two assessment managers and the Principal Educational Psychologist. There are strict time limits about assessment and statementing. The process starts when the local authority gets a request from you or the school to consider an assessment. You need to make sure that they are sent enough information with the request to make a sound decision. At this stage they will only be looking at the information sent by you and the school. - 83 -
From the point of the request for an SA to be carried out, the LA have six weeks to decide whether to make an assessment (through the SA Panel), and they must write and tell you their decision. If they decide on an assessment, they have 10 weeks to carry it out. They will gather evidence called ‘advices’ from the school or early education setting, an educational psychologist, health & social professionals involved with your child, and others. They will ask for your views and as far as possible the views of your child. You can also suggest other people or groups that the LA should contact. In Autumn 2o10 the SEN Team in West Sussex piloted ‘Information Sessions’ to simplify and demystify the process for parents and offer opportunities to ask questions in an informal environment. These sessions have proved very helpful to parents and have therefore been rolled out countywide from. They will also give you a chance to meet your caseworker and other parents that are going through this process. It is also a good opportunity for you - 84 -
to get updates on the progress of the statutory assessment. The Parent Partnership Service also attend these sessions (situated in a different room) so that if you want to make sure that they are getting impartial advice, you can visit their stand and talk to one of the Parent Partnership Advisers confidentially. At the end of the 10 weeks, the LA has two more weeks to decide whether to issue a draft or proposed statement. If they decide a statement is required, they must send you a copy of the proposed or draft statement for your comments, together with copies of all the reports they have received and used when reaching their decision. The proposed statement will not refer to any school by name, as the LA must send details of all suitable schools and a preference form to complete. Don’t be confused by this long list of schools all over the country. It’s a legal requirement for the LA to send this but most children with statements go to a local mainstream school or perhaps a local special
school or unit When the proposed statement arrives, you have 15 days to think about whether you’re happy with it or not. At this point, you have the right to a ‘statutory meeting’ to discuss the proposed statement with an LA officer. Usually, parents only ask for this type of meeting, if they are very concerned or disagree with what has been written in the proposed statement. Eight weeks after the proposed statement, the LA should issue the final statement. The final statement will name a school. The entire process of statutory assessment must be completed within 26 weeks, although there are some exceptions to this time limit. At various points in the process (and after) you have a right to appeal against LA decisions and there is more information on these rights later in the chapter. If the LA decides not to issue a statement they must write to you explaining the reasons for their decision and your right of appeal. They’ll also send you a note in lieu
of a statement, setting out the reasons for their decisions, the supporting evidence and all the reports received during the assessment. If you agree, the note can be passed on to the school to help them plan for the future. “The physio at the special clinic that she goes to and the playgroup did a report as well. Basically, I asked ‘Would it be possible to do an assessment report and have it ready, so as soon as the LA officially asks, you can do it straight away’. So later the LA couldn’t say, ‘Oh, it’s still with the physio’ because it wouldn’t be.” What should you expect from the LA? If the LA decides to carry out a statutory assessment, they will write to you to: • Explain the procedures to be followed and the time limits • Provide the name of a casework officer (Named Officer) who will be your contact at the LA • Inform you about the Parent Partnership Service and how - 85 -
to get impartial advice and support including an Independent Parental Supporter if you want one • Explain your right to agree or disagree with what they are doing and your right to send in your own written evidence • Explain your right to appeal against their decisions, and how you can access independent disagreement resolution arrangements The local authority MUST: • Conduct the assessment within the proper time limits • Decide whether or not to issue a statement • Write a clear and thorough statement setting out your child’s educational and other needs, what they hope to achieve, the extra help to be given, arrangements for monitoring and reviews • Ensure that your child’s statement is reviewed every year through the formal procedure of an Annual Review
Statements of SEN A statement of special educational needs (SEN) is set out in six parts: Part 1 gives your child’s personal details such as name and address Part 2 gives details of your child’s learning difficulties and disabilities, as described in the assessment. Part 3 describe all the special help the LA thinks your child should have to meet the needs set out in Part 2; what they hope your child will achieve through this special help in the long term; how short term targets for your child will be set and their progress reviewed Part 4 tells you about the school where your child will receive this special help, or about other arrangements for your child to be educated, if not at school Part 5 tells you about any help not related to education your child may need, like transport to school or physiotherapy Part 6 describes how your child will get this help
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What will my role be? “I think they can’t rush parents, ‘cos you’re coping with your own emotions as well as what your child needs, and of course, it’s got to be like a step at a time for you, really.” It’s often hard to stay patient and calm while all this is going on. Negotiation with schools and the LA can sometimes be frustrating and stressful. The LA should keep you informed about their plans and you can call the casework officer to check on progress. Your views about your child should be taken into account during the assessment process. You have the right to be with your child at all interviews, medical tests or any other test. Sometimes a professional may wish to observe your child in the classroom, or on their own, but should tell you they are doing this. You have the right to say which state school (mainstream or special) you would prefer your child to go to, although the LA only has to agree with this if:
• Your chosen school is suitable for your child’s age, ability and special educational needs • Your child’s presence there will not affect the efficient education of other children already at the school • Placing your child in the school will be an efficient use of the LA’s resources You may want your child to go to a school that is not a state school, for example a private special school. You can formally ask the LA for this and they must give careful consideration to your request, but they do not have a duty to spend public money in this way if there is a suitable state school place for your child.
Annual Reviews If your child is issued with a statement, the LA can review it at any time. However, it must be reviewed within 12 months from the date it was finally issued and then every year within 12 months of the last review. If you become worried about your child’s progress you can ask the LA to review the statement at any - 87 -
time. During the first six months, though, they don’t have a duty to do so.
tions that are made at the Annual Review meeting, the LA will decide on one of three things:
You should be invited to all reviews of your child’s progress, and you can take someone with you to these meetings. Wherever possible your child should also be actively involved in the review process. The head teacher will arrange the annual review meeting, which is usually held at the school. Your child’s progress will be discussed and new targets should be set.
• to continue with the existing statement • to amend or change the statement • to withdraw or ‘cease to maintain’ the statement.
Others involved with your child (like teachers, educational psychologists and social workers) will be asked if they want to attend the annual review. However, they may send written reports instead. It’s important you get the chance to read their reports beforehand so you can think about what you want from the meeting. You should be sent them two weeks before the meeting. The LA Special Needs Officer dealing with your child’s case will also be invited but may not attend. As a result of any recommenda-
If the LA decides to change the statement, they will give you a proposed amended statement and follow the same procedures and timescales used when producing a new statement, which means you have the chance to put your views and appeal the decision if you can’t agree. It is important to know that a statement can only be changed through the Annual Review process. If they withdraw the statement you can appeal if you disagree. Since September 2010, you now have a right of appeal if you or the school (through the Annual Review meeting) has asked for changes and the LA decides to leave the statement as it is. The annual review in Year 5
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should look at your child’s transfer to secondary school. It should make recommendations about the sort of provision your child will need at secondary level so you have time to make visits and look at the options. The statement must be amended by 15 February in Year 6 to include the name of your child’s secondary school. This should mean the Year 6 review meeting can look at arrangements for a smooth transfer. The SENCO of the secondary school should be invited to the meeting. Transition Planning Annual Reviews The annual review in Year 9 is particularly important because it has to draw up something called a Transition Plan which collects the views of a range of people about the plans for your child’s transition to adult life. The Connexions service has a key role in the development and delivery of the Transition Plan. Your child should get a Connexions Personal Adviser (PA) who will
help them explore their options for further education, training and work. This replaces and extends what used to be the careers service. Other professionals invited to this meeting will include someone from social services, so that any assessment under the Disabled Persons Act 1986 can be made. Your child’s own view about their future after they reach 16 should be central to the discussions, and they should be encouraged and helped to be involved in plans for their future. Some schools are now running these transition planning reviews as ‘person centred reviews’ which switch the focus even more clearly to the young person’s perspective. Annual reviews in subsequent years should add to and develop the Transition Plan. Some children with statements stay in school after the age of 16 and the LA continues to maintain these statements until they reach 19. Chapter 10, ‘Looking Ahead’, goes into more detail about things to consider once your child reaches the age of 16. - 89 -
Changing schools If you want your child to change school (other than the usual moves from primary to secondary school) you will have to ask the LA to change the name of the school in your child’s statement. You have the right to ask for another West Sussex state school (mainstream or special) as long as the school you are requesting is like for like, and it’s at least 12 months since you last made a request or since your child’s statement was made or last amended. The LA has eight weeks to make a decision on your request and you can appeal if you are unhappy with their decision. You don’t have a right to ask for a move to an independent special school. If you really feel this is what your child needs, you may have to request that the LA reassess your child. “When we wanted to get him out of the SLD school into an MLD, it was a terrific struggle, but we had a very good EP, she was absolutely outstanding, and the speech therapist was very helpful too. We really - 90 -
pushed and pushed, and we were lucky, we did get him into the MLD school.” If you move out of the county, the new LA must honour your child’s statement and place them in an appropriate school while they are sorting out their own procedures. These will usually mean reviewing the statement, or deciding to do a new assessment. If your child is at an agency placement funded by the LA, the new LA must continue to pay the fees until they change the statement.
The Disability Discrimination Act and schools Did You Know?
Schools must produce a Disability Equality Scheme which states how they make the school accessible to children with special needs and how that will improve over time
Since September 2002, schools have come under the Disability Discrimination Act (DDA) 1995, and have a duty not to discriminate against disabled pupils and prospective pupils in the way they provide education and ‘associated
services’. It also applies to admissions to school and exclusions.
needs’, but can cover conditions we might not think of as a disability like dyslexia or emotional This means that they must not and behavioural difficulties if they treat your child less favourably cause a substantial adverse effect than other children for a reason on the child’s day-to-day activirelated to their disability. If they ties. It is worth noting that areas do treat a disabled child less covered by the duty not to disfavourably they have to prove this criminate are quite wide including was justified and there was noth- school trips, after school clubs, ing they could have done to avoid play and lunchtime arrangements it. They also have to take reasonas well as access to the school able steps to ensure that disabled curriculum. children coming to the school will not be put at a substantial The DDA Code of Practice gives disadvantage compared to other guidance to schools about what children. they should do and includes examples of situations where a parThese DDA duties don’t include ent could use this law to protect providing specific bits of equiptheir child’s interests. ment, as the SEN Code of Practice should cover this, nor does What if I don’t agree with what it include physical alterations is happening? to buildings, although schools and LAs do have a duty to plan If you are concerned about the progressively to improve access. support your child gets at school Schools also have to produce a start by talking to the person Disability Equality Scheme that closest to the problem – usually sets out how they will promote the class teacher. Keeping good disability equality throughout the communication going is most school. productive, but you may need to persist in following up concerns The definition of ‘disabled’ is not with the SENCO, head of year, the same as ‘special educational the head teacher and governors if - 91 -
you feel the issue is not resolved. All schools have a complaints procedure you can use. If you cannot resolve your differences with the LA you may be able to appeal to the Special Educational Needs and Disability Tribunal (SENDIST), an independent body that hears parents’ appeals against LA decisions on statutory assessments, statements and claims of unlawful disability discrimination. There are strict timetables for making an appeal to SENDIST which differ for SEN appeals and disability discrimination claims. If you are considering appealing it is important to get advice as early as possible.
• • •
4 of your child’s statement the LA refuse to assess your child again or change the name of the school on the statement to another of the LA’s schools the LA decides to stop maintaining the statement. The Local Authority decide at the Annual Review not to change the statement The Local Authority refuse to carry our a re-assessment of your child’s needs.
You can appeal to SENDIST if:
In these cases, SENDIST can change the LA’s decision. If it’s a disability discrimination case, they can’t order financial compensation but can order a remedy such as extra tuition to make up for lost time due to discrimination. Or they can order a change be made to a school policy that led to your child being treated unfairly.
• the LA refuses to assess your child after you or the school have requested this • the LA refuses to make a statement after assessing your child • you disagree with Part 2, 3 or
Going to tribunal is a stressful experience and not to be undertaken lightly. It is the last resort for parents who have been unable to resolve matters with the LA or school in any other way. Parents who decide to go to appeal need
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to have energy, be well prepared and have access to the best possible advice and support. While SENDIST encourages parents to represent themselves at appeals, many have found it a daunting experience. If you cannot find someone to help you prepare your appeal, you may decide to instruct a solicitor. If you take this route make sure they have a specialism in education law. You may also qualify for free legal assistance so be sure to ask about this before going ahead. The Parent Partnership Service are able to assist with the completion of forms and preparation of your case by helping you think through what you want to get across during the tribunal hearing. However, they would not make recommendations or decisions for you. If you feel you require legal advice then the Advisory Centre for Education (ACE), telephone 0808 800 5793 or Independent Parental Special Education Advice (IPSEA), tribunal helpline tel 0845 602 9579 may be of use to you.
â€œIt was an awful hassle to go to appeal, but it was important that the integrated activities he was having should continue. We just had the energy to do it, I suppose.â€? If you feel your child has been discriminated against on the grounds of their disability, you should start by complaining to the head teacher and governing body of the school. If this does not resolve the matter, you can make a claim of unlawful discrimination against a school on behalf of your child to SENDIST. Some claims of unlawful discrimination will go to admissions appeal panels or, for exclusions, to independent appeals panels. Disagreement Resolution The LA must provide a disagreement resolution service. Making use of this service does not stop you making an appeal to SENDIST, but the aim is to resolve disagreements that might otherwise end up at Tribunal. The LA should let you know their arrangements for disagreement resolution. As a first step you - 93 -
should ask to meet with your Casework Officer and the Assessment Manager. If this doesnâ€™t resolve things there is a two-stage process: firstly, a case review by the Principal Educational Psychologist, secondly, access to an independent mediation service called Global Mediation. You may also want to contact your Parent Partnership Service as they would be able to help you through this process. The Equality and Human Rights Commission runs an independent conciliation service for disputes between parents and schools about disability discrimination. Again this does not stop you making a claim to SENDIST, but does aim to resolve cases that would otherwise end up at Tribunal. Bullying Children with special needs are more at risk of bullying. Sometimes they may be more likely to bully others too. Bullying is very distressing for children and parents, but there are things you can do to support your child if you think they are being bullied. The - 94 -
first step is to talk to your child. Thereafter, you can contact the West Sussex Action Against Bullying Helpline on 0845 075 1010. Exclusion Children with special needs are at additional risk of being excluded at some point in their school life. Exclusions can be fixed term (for a specific number of days) or permanent. The school must write to tell you that your child has been excluded, why and for how long. And they should invite you and your child to a re-integration meeting when they return to school. Sometimes itâ€™s only when your child faces exclusion that you realise they have special needs not being met at school. Schools are meant to take all possible steps to avoid the exclusion of children with special educational needs. This could include re-assessing their needs or requesting a statement. If your child is excluded even for a very short period it is a very worrying time for parent and child. There are options for appeal. You
need to get good advice. Locally, we would recommend contacting the West Sussex Parent Partnership Service first. The Advisory Centre for Education run a national exclusions helpline too. Parents of children with special needs also find that schools ask them to collect their child early or send them home whenever there is a problem. Sometimes they suggest the child only comes to school part-time. Although the school does not call this a formal exclusion, it is excluding the child in practice. Frequent informal exclusions of this kind may be a sign your child is not getting the support they need and may be illegal. You should raise this with the school. Did You Know?
The West Sussex Parent Partnership run a confidential helpline for parents of children with special educational needs
Who can help with education matters? Because education is complex and often problematic for parents, it’s important you get independent help if you need it, especially if you are in disagreement with your child’s school or the LA. If you are on a low income, you may be able to get free legal advice from a solicitor. Locally, the West Sussex Parent Partnership Service offers support and information to parents who have a child with special educational needs. They are described as an “arms length” service which means although they are funded by West Sussex any advice they give is “impartial, confidential and free”. The Parent Partnership Service provide a range of services including a confidential helpline (during working hours), information about SEN processes, plus a small team of Independent Parental Supporters (IPS) who can attend meetings with parents and help them express their views in writing. - 95 -
Some of the parent-led special interest groups such as AFASIC, the Downâ€™s Syndrome Association and the Dyslexia Association have considerable expertise in the field of education and will support and act as advocates on behalf of parents. Nationally, organisations such as the Advisory Centre for Education, IPSEA and Network â€™81 are useful sources of support and they often have informative publications. Campaigning organisations such as Parents for Inclusion and the Alliance for Inclusive Education may be helpful for parents who feel strongly about their children being educated within mainstream schools. The DCSF produce a guide for parents called Special Educational Needs (SEN) - A guide for parents and carers and you can download it from http://education.gov.uk/ publications/ or call 0845 6022260 and request a copy. You can also obtain a free copy of the SEN Code of Practice from them. Copies of the DDA Code of Practice are available from the Equality and Human Rights Commission. - 96 -
Contact details for these organisations are listed at the back of this book.
Help with daily life
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7. Help with daily life Life with a child with a special need makes managing daily living different in various ways. For many of us, finding out what help is available was really difficult, and we hope that some of the ideas and tips in this chapter will save you having to start from scratch. In West Sussex many of the specialist health and social care services are based at your local Child Development Centre. For general advice this is a really useful place to start. Don’t be afraid to ask - ask other parents where they got that equipment, how they got access to that service or simply how they coped. Ask professionals what is available; ask organisations where to find information; ask your friends, relatives and neighbours for a bit of extra support. “If people say to me ‘let me know if I can help’, I take them up on it find something they can do! People in my church have been wonderful, providing meals, doing the ironing, giving practical help during the hardest times.” - 98 -
Every household is different and you need to work out what help is best for you and your child. What we’ve tried to do in this chapter is tell you about some of the services that are available, how to go about asking for it, as well as suggesting places to look for other information and keep up to date with new developments. It’s good to remember that some services for disabled children are county wide. However, more mainstream services may also be useful to you and these are provided according to which area of the county you live in, so it’s worth checking locally. “We were asked if we wanted a social worker and we said ‘No’. I thought, ‘What do they do?’ I didn’t know what kind of help they could offer. It wasn’t until I broke down in hospital, and I was absolutely desperate, and then…” Many of us turned down the offer of a social worker when we discovered we had a child with special needs. We couldn’t see how it was relevant. We thought that social workers only dealt
Help with daily life
with families where children were ‘at risk’. We were afraid that social workers would judge us as parents, particularly if we admitted to feelings of anger towards our children or that we sometimes felt unable to cope. In fact, although social workers put the safety of the child first, they cannot take children into care or put them on the ‘at risk’ register without parents’ knowledge and involvement at every stage, or without trying every other course of action first. Instead, social workers feel that if at all possible the best place for a child to be is with their family. Some of us asked for help when we reached crisis point and felt we couldn’t manage any more. Other parents realised, as they gradually got to know ‘the system’, that the backing of social workers was essential for getting the help they needed.
How to access services Common Assessment Framework and referral to specialist services If you are concerned about your child’s development, you can ask any professional who knows you to complete a referral form. This is based on the Common Assessment Framework, or CAF, and is a way of planning extra help for families. The CAF happens whenever someone who works with a child or family thinks they are going to need extra help; specifically help that goes beyond a single issue or involvement with just one service or professional. The aim is to coordinate what is planned and avoid you having lots of different assessments and meetings. You have to agree to the CAF and be involved from the start. If a CAF goes ahead there are three stages: 1. Assessment – you talk to a professional who knows you or your child, they find out more, - 99 -
fill in a CAF form and agree with you whether to go ahead with the CAF. If your child needs specialist services you can be referred to your Child Development Centre. If this happens your child’s needs will be discussed at a referrals meeting. 2. Action plan – you, and the workers who can help, discuss how to support you and your child. This is written up as an action plan and a lead professional is picked to follow it through. 3. Review – you and everyone involved look at how the plan has worked and what comes next. At present, however, access to the kinds of help and support that social services can provide is most often gained via a social worker. Getting help from a social worker “I think you cope, you don’t really ask for help when you’re feeling articulate. You usually end up waiting until you’re not articulate and everything’s gone to pot, and that’s when you need these people.”
Many of us only asked for help when we were desperate, and felt we couldn’t cope any more. By law, social workers have to put at the top of their list families where children are ‘in need’ (this includes eligible disabled children), ‘at risk’ or need protection. So, unless you make it clear just how difficult things are, you may find your request for help at the bottom of the pile with a long wait ahead of you. If you need help now, say so, or try to ask for help before you reach crisis point. “What I realised after I’d asked for help was that my entire life had been out of control for ages. I thought I was coping - I thought I was keeping the lid on the pan.” Before you meet the social worker, try to think about how your life has changed and become more difficult as a result of caring for your child with special needs, and what kind of help you think you all need, now and in the future. To get help from a social worker If your child has severe of complex disabilities than you can be
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assessed for support by one of the county’s 3 Child Disability Teams, the contact details for which are at the back of this book. They will undertake a needs assessment and if they decide you and your child are eligible for support can provide help with short breaks, care in the home and activities for your child.
is taken to the Team Manager who will decide if you are eligible for support and if the area office can pay for your needs as stated in the assessment, or whether more work is needed to make those decisions. Assessments have to take account of your needs as a carer as well as those of your child.
If your child doesn’t have the kind of disabilities described above, contact one of the three area Care Management Area Teams who support children with additional needs but not complex disabilities. They have a duty to make an initial assessment within seven days and, if necessary, a more detailed core assessment within 35 days. A social worker from the area teams is only likely to become involved if your family is having significant difficulties.
If your child needs equipment or adaptations to the home, an occupational therapist from the county council will carry out their own specialist assessment.
What happens when the social worker visits? The social worker will carry out an initial assessment of your child’s and your family’s needs. You are legally entitled to this if you request it. This ‘needs assessment’
There are regulations that require social services to make formal plans for supporting children. This includes producing a care plan which is agreed with the parents, a placement agreement and systems for monitoring your child’s welfare. Sometimes services struggle to achieve these requirements and in practice, it is always a good idea to keep an eye on what is happening yourself. “I didn’t know anything about the Carer’s Needs Assessment. When I asked my social worker about it, she gave me a form to fill in.
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Although it felt like I was at last being acknowledged for the effort it takes to look after Daniel, I can’t see that it made much difference. I didn’t get any extra help as a result.”
with professionals. Here, we offer you a few extra hints which some of us have found useful:
• Just because you get a ‘no’ this time, don’t take that as their final answer. You can What social workers can offer have more luck if you ask at the beginning of the financial Social workers can be a source of year (April) rather than later practical and emotional support when all the money’s been for parents and they are able to spent. And even if you get a offer other kinds of help. Between ‘no’ now, don’t be afraid to us, we have used them for: ask again as your needs and your child’s needs change. • Providing adaptations and • Find out what other parents special equipment have got, and how they man• Short breaks, which can be aged it. Inside knowledge can with another family, outreach, be very useful. residential or via Direct Pay• Get other people on your side ments - your GP, consultant, health • Help with filling in forms and visitor - get them to write letgetting financial help ters for you, explaining what • Support from family support you need and how much you teams need it. • It’s important to build up a Tips for working with social good relationship with your workers GP and social worker so that when you are desperate they Many of us have had lots of conalready know who you are tact with social workers over a and what you and your child’s number of years and we suggest problems are. you have a look at Chapter 3 for • However, if you’re not happy some practical tips for working about the way things are - 102 -
Help with daily life
team of occupational therapists who carry out specialised assessments for families who need equipment and adaptations to the home. The health service also employs a team of occupational therapists.
going in your contact with social workers, then Chapter 8, ‘Making systems work for you’, may be of help. Challenging decisions or making complaints can be stressful, but unfortunately it is sometimes necessary.
Who’s who? • Community Family Worker: works in the home alongside the parents, offering practical and emotional support. • Duty Officer: a social worker or social work resource officer who is taking their turn on the ‘duty desk’, taking new referrals and dealing with emergencies. • Key worker: keeps families informed about services for their child and ensure professionals have all the information they need to provide a good service. The Keyworker co-ordinates service provision to minimise duplication and stress for the family. • Occupational Therapist (OT): Social care employ their own
• Children’s centres: facilities where parents and children can get services and support for their children, as well as advice and information. • Early Years Visitors: work with health visitors as part of the Sure Start team. They support families, where children or parents have additional needs, and will work with you at home or at the children’s centre. They also run a variety of groups and activities at the children’s centres. • Social Workers and Social Work Resource Officers: can offer advice and counselling to families. They assess what kind of help you might need, and try to get it for you. They can offer ongoing emotional and practical support to families. - 103 -
Words they use Care Package: this is the extra help you get after your needs assessment. It might, for example, include short breaks, a session with a community family worker or some social work support. Carer’s Assessment: If you are the person most closely involved in looking after your child, and your child is having – or is eligible – for an assessment of their needs, you will be entitled to a Carer’s Needs Assessment in your own right. Ask for it. Children’s Trust: This is the name of the umbrella organisation that brings together education, health and social services for all children and families. Multi-disciplinary/multi-agency: where all the professionals or organisations providing treatment or support come together to assess or discuss your child or your family situation. Needs Assessment: to decide on the extra support your child needs, the social worker will
come to your home to find out more about your situation. They then write a report, giving details of your needs. This report is called an ‘initial needs assessment’ and any help your child receives should be based on it. It also includes the needs of parents/ carers and the family as a whole, including siblings. Outreach: this is where a worker comes out to you and/or your child, rather than you having to go to them (see Outreach Worker in the Who’s Who section). Did You Know?
You can ask for a carer’s assessment when your child is being assessed by social services. This may help you secure additional support
Who pays? Most help available for families is free. You shouldn’t be charged if you are on Income Support, or receiving working tax credit or child tax credit (above the family element). Budgets are almost always very stretched. Many parents are happy with the way their needs have been assessed,
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Help with daily life
but then find there’s a waiting list for those things their assessment says they do need, like outreach and short breaks. More recently, Direct Payments have been introduced as an alternative way of funding short breaks and other types of support for disabled children and their families. We have included more information about this option in Chapter 4 ‘Help with Money Matters’ as many parents say it is well worth considering. If your child’s disability involves ongoing medical treatment or help, the local health authority may be asked to contribute towards the cost of extra help such as outreach care. This is known as ‘joint funding’ which can take a very long time to get everyone involved to agree on who will pay for what. Short breaks or respite Don’t be afraid to be honest with those you can trust about the support you need. Sometimes you give so much to the one child, that you need renewed energy
for the rest of the family and yourself. We all need a break and that’s nothing to feel guilty about. Having a child with special needs puts extra stresses and strains on relationships and family life. Short breaks are all about giving you and your family that break - allowing someone you trust to look after your child while you go out or spend time with other family members. It can include care in the home, day care away from the home, residential breaks, family link schemes, holidays, after school clubs and holiday play schemes. “It’s a big thing at any time, isn’t it, putting your child in someone else’s care... You feel better about having admitted that things are too much at times. I phoned up Susie’s link family and I said, ‘Look, we really are having a crisis, would you be able to have her for a whole day’, and they said ‘Yes, fine, we’ll have her’. It was so good because then she knew how I felt...” The other benefit of a short break is that it can be a great confidence booster, for you and your
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child. You find out that you can let your child go, and your child finds out they can enjoy life away from the family. Some of us have found that this really pays off in the long term, because our children have learned to adapt to new situations and experiences much better than they might have done otherwise. Sometimes it’s not easy to admit you need a break. You struggle so hard to keep going, the thought of having to make extra arrangements for your child’s care seems hardly worthwhile. But most of us have found any good short break a life-saver, and well worth the effort spent on getting it right. “With our short break, the first person who was recommended to us, we actually turned down. I gave it three mornings’ trial with this person and she was a brilliant carer, but she didn’t have enough oomph for Jane, and I could see it wasn’t going to work. So I explained, and we were given another one and she’s been with us two years, and is absolutely brilliant.”
Getting a short break A word of warning: a short break is often hard to get! First you need to recognise you need it and deal with all the difficult emotions that may bring up; then you need to start asking for it. It may begin with just a few hours, but can then lead to longer periods that will give you a wonderful break. Here are a few tips: • Getting a break or respite usually means asking a social worker for an assessment. Put it in writing and keep a copy. • Explain how the demands of caring for your child are taking their toll and make it clear that things are difficult. • Ask other professionals to support your request by writing to your social worker as well. • What’s right for one family may not be right for yours so think about what would work best for you. • If you are offered a familybased short break, meet with the family first and spend time agreeing how best to trial things.
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Help with daily life
• If you are offered a residential short break, visit first when other children are there and ask questions. If you want to, feel free to ask your social worker if they can visit with you. • Write down a list of questions beforehand and take this with you to visits or meetings about short break arrangements. • Keep an open mind as sometimes first visits don’t go well and often it takes time for children to settle in with new people. • If you want something more flexible, think about asking for Direct Payments. We explain about this in the ‘Money matters’ chapter. Children’s Continuing Care Service The NHS provides health care in a non-hospital environment to both children and adults who have ongoing needs arising from a disability, illness or injury. To qualify the person in question must have a “primary health need” and have a complex medical condition with
substantial ongoing care needs. Continuing Care is provided following an initial assessment by a relevant health or social care professional followed by a more detailed assessment by a team of professionals which is a co-ordinated by a Continuing Care Nurse. To find out more ask a health professional working with you and your child for more details. Fun & Breaks Formerly known as the Sitting Service, Fun & Breaks or the FAB Service, which is run by the County Council, matches families with disabled children with volunteer carers who typically give 4 hours per fortnight to families, enabling them to take a break. Volunteers can enable children to access activities such as swimming, Brownies, bowling, sport activities, or provide a short break within the child’s own home. Your Child Disability Team social worker can put you in touch with the service or you can contact them directly. Your child should
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be in receipt of medium or high care component of Disability Living Allowance or have a comparable need, and should be not be receiving more than 12 hours per month of other support, for example, Direct Payments. Residential services There are a number of facilities in West Sussex providing short and long-term respite care for children with special needs under the age of 18. These include: • Cissbury Lodge (Worthing) – residential home for 8-18 year olds with learning and physical difficulties. Provides both short and long-term care. • High Trees (Crawley & Horsham) – provides residential or day-time short breaks for up to 6 children with severe learning disabilities aged 7-18 • Holly Lodge (Horsham) – short breaks and over-night respite care for children aged 0-19 with profound learning difficulties • Orchard House (Cuckfield) – Respite unit for children with learning disabilities aged 12-
19 and day service provision for children under the age of 12 For further information on these or other residential respite services we recommend contacting your local Child Disability Team. Foster care West Sussex County Council sometimes use their fostering service to provide overnight or short breaks for children and young people with special needs. The children and young people are cared for in the foster family’s own home. All carers go through a rigorous fostering assessment and care is taken to match suitable families. Crossroads Care Crossroads is a charity that provides respite care in your own home, on a regular basis, to give you a break as a carer. The scheme’s assessor visits and assesses your needs, and you make an agreement about what would help most. Crossroads care workers can come and play
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Help with daily life
with your child for a few hours a week or month, or help out during holidays when perhaps you want to spend some time with your other children. Visits are at the times you need them most, and can be after school, evenings or weekends, depending on staff availability. An average of 3 hours per week is available per family per week.
for you to take a break, clinical nursing care, end of life care, pre and post bereavement support, etc. They also run a number of fun days and activities at the hospice itself which children receiving community support are eligible to attend. Finches For children aged 0-19 who have complex disability or health care needs, Chailey Heritage manage a bungalow in Burgess Hill called Finches, which provides short term respite care. It accommodates 5 children at any one time. Families who use the service must live within 40 minutes of the bungalow (which might not be feasible for families in the west of the county).
Crossroads also provide an emergency respite scheme for 48-72 hours over a weekend or a bank holiday. “I did have two people from Crossroads who came and stayed in the house and played with her. These women who came in loved children, and they were brilliant. They were all mums and they brought an enjoyment to the house when I couldn’t, when I was struggling.” Chestnut Tree Community Team Chestnut Tree House near Arundel have a team of nurses and care support workers who provide support to families at home and in the community. Types of support include at home care in order
They also provide out-reach workers to support families at home by providing a time-out to parents and carers. Referrals must be made by a professional, like a social worker, GP or community nurse. You will then receive a home visit from Finches who will undertake a nursing assessment of your child’s needs.
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Direct Payments Direct Payments are an alternative way of funding short breaks and other types of support for disabled children and their families. We have included more information about this option in the ‘Money Matters’ chapter, as many parents say it is well worth considering. Did You Know?
You cannot be refused Direct Payments if your child has been assessed as needing support by Social Services
After School, Holiday Clubs and Buddying Schemes For many parents the most helpful kind of short break is an after school activity or play scheme that takes place in the holidays. They are a lot of fun for your children while also giving you a break: • Angmering School run a Saturday Club from 10am – 2pm for children aged 10+ with Autism • Ashdown Club (Guild Care) in Worthing provides play sessions at the weekends and in
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school holidays for disabled children aged 5-18 Autism Sussex provide a number of projects that benefit both children and parents in the Arun, Chichester, Horsham and Worthing areas including short-breaks, a sitting service, buddying scheme and weekend and after school clubs Chanctonbury Community Play Scheme in Worthing provides 4 weeks of volunteer-led respite care during the summer holidays for children aged 5-19 who have a statement of special educational needs Kangaroos in Haywards Heath run a number of after-school, weekend and holiday activities for children with special needs aged 3-19 PACSO in Chichester run a number of after school clubs, weekend and activities and holiday play schemes for children with special needs aged 5-19. Rainbow Trust run 1-2-1 personal short breaks across West Sussex for children and young people aged 0-19 with life-limiting or life threatening conditions
Help with daily life
Equipment and adaptations
• Springboard run a number of after-school , weekend and holiday activities for children with special needs including 3 buddying groups which help disabled teenagers access recreational opportunities in Crawley, Horsham and MidSussex • Spurgeons run a buddying scheme which enables disabled children and young people aged 5-19 access local services in their community
If your child has severe physical difficulties, which make it hard to manage everyday things such as meal times, toileting or getting around, you may be able to get special equipment or adaptations in your home to make life easier. Community Equipment Service
Childcare The Family Information Service has a list of registered childminders, playgroups, nurseries and after-school clubs in the West Sussex. They offer an extra support service which can help you find suitable childcare if this might not be straightforward for your child. West Sussex Emergency Respite Scheme
You may be able to get some things to help with looking after your child at home from a loan scheme run by social care and the health service. Non-slip mats, toilet seats, bath aids, ramps and other equipment (including sensory equipment) are available following assessment by an occupational therapist, community nurse or physiotherapist. The equipment is delivered to you and if necessary safely fitted. You can contact the service direct or ask your GP for a referral.
There are constant changes and developments in the kind This service provides emergency of equipment and gadgets that cover for carers who are ill or have are available, and it’s sometimes been involved in an accident. useful to be able to see what’s on Care can be provided for up to 48 offer. Some of us have found it hours (72 hours over a weekend or helpful to visit independent living Bank Holiday). exhibitions or centres. - 111 -
The Disabled Living Foundation in London is also a good place to visit if you can get there, and they have a telephone helpline. The Centre for Accessible Environments is also based in London. They provide information by telephone, letter, email and face to face and provide a consultancy service. The biggest annual exhibitions of equipment and useful gadgets, are Naidex, Independent Living and the Mobility Roadshow (which also has dozens of exhibitors of products not just to do with cars/vehicles and wheelchairs). The dates and venues for these are advertised in papers like Disability Now (DN). There are also adverts in DN and local newsletters for second-hand equipment, or you can try the Disability Equipment Register as well. Wheelchair Service If you specifically need a wheelchair for your child you can loan one from the Wheelchair Service which has branches in Bognor, Horsham and Worthing. You need referral from a healthcare profes-
sional like your GP, your child’s physiotherapist, etc. Specialist equipment For specialised equipment, Chailey Heritage has a rehabilitation engineering unit, which will custom-make or specially adapt existing aids to suit your requirements. Others like REMAP and MERU will try to make equipment to suit your child’s individual needs, which you may not be able to get anywhere else. If your child needs specialist equipment at school, you should discuss the situation with your child’s school. WhizzKidz is a charity which can often help with financial costs where, for example, you’d like your child to have a better wheelchair than can be provided on the NHS. Whizzkids can make up the difference in cost if you can’t afford it yourself. Adaptations to your home Getting major adaptations to your home can be a very slow process. Just getting a ramp or
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stair lift in your home can take a year or more, and alterations like an extension will take at least 12 to 18 months.
making the home ‘safe’ - this was added specifically with the needs of children with challenging behaviour in mind.
You need to start by contacting your social worker, if you have one, or the Care Area Management Team for your area. They will arrange for an occupational therapist (OT) to visit you at home to discuss what you need and assess if you are eligible for support. Recent changes in the rules for grants mean that if there are long waiting lists to see an OT, the county council can ask someone else (e.g. your GP) to carry out the assessment.
There are various ways of paying for these works. Council tenants are usually funded from budgets held at their local housing office. Owner-occupiers and people in rented accommodation can be assisted to apply for money the council call Disabled Facilities Grants. The first £30,000 of this award is not ‘means tested’ but your income would be taken into account for any amount over this. The Disabled Facilities Grant now has an element concerning
It may be your present home isn’t suitable and can’t be adapted to meet your child’s needs. If you are a council or housing association tenant you should speak to your housing officer about moving to a more suitable home. Although it’s often a long wait, if you need specially adapted accommodation you will have a better chance of moving, or your name can be passed to another housing association that has appropriate flats and houses. If you rent your home from a private landlord it can be even more difficult to make it suitable for your child’s changing needs. Your local council housing service can give you information about getting onto the council or housing association waiting lists. They may also know about any local estate agents who have information about adapted properties for sale in the area.
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Although it’s a national publication it’s also worth looking in Disability Now as many people advertise there when they are selling property suitable for households with a disabled person (or you could place a ‘wanted’ advert). If you’re on the internet there’s also a property website dealing exclusively with accessible homes for sale and rent – ‘The Accessible Property Register’.
Other kinds of practical help This section includes a range of other schemes which can help with day to day living. For information about the schemes which primarily offer financial help, such as Motability and the Family Fund, see Chapter 4, ‘Help with money matters’. Carers Emergency Alert Card This is a small card with a message ‘Someone depends on me. In an emergency please telephone ...’ that number will alert the 24 hour emergency alert service, which will respond by carrying instructions on an enrolment form previously filled in by
you, the carer. In West Sussex the scheme is managed by ICIS. You can contact them on 0800 859929 (Freephone). Free nappies If your child is four years old and still needs nappies because of their special needs, you should be able to get them free from your health visitor. School-age children can get them via the school nurse and six products per day is the usual maximum number allowed. You can contact them through your health visitor, school nurse or district nurse.
Getting out and about Those of us who have children with complex physical needs have to plan outings, even simple everyday ones, with care. Even a trip to a supermarket can present problems if your child uses a wheelchair or large buggy. Your local council produce leaflets about access, which can be a useful starting point. They have details of a range of accessible places locally, including disabled
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Help with daily life
toilets. They are also useful if you want to find out which branch of your bank has a ramp. Your local council will have information available on disability access in your area. They may also provide you with a RADAR key to open accessible public toilets. It is always worth checking with the place you are going to because the information does get out of date, and sometimes the level of access described in leaflets can be misleading. Blue Badge scheme The Blue Badge scheme allows the holder to parking concessions to make it easier to park closer to your destination. You can use it in anybodyâ€™s car, but it belongs to the child and is there to help them rather than the rest of the family. It is valid for three years. West Sussex County Council administers the scheme and apply strict criteria. Children are unlikely to get a badge if they are under two. If they are over two, it will depend on the degree of their disability. They will normally
qualify if they are receiving the higher rate of the mobility part of Disability Living Allowance or are registered blind. Contact the Parking Officer at the council to apply. Did You Know?
If your child receives the higher rate mobility component of DLA you are entitled to a blue parking badge
Disabled parking bay scheme If your child has problems with mobility and has a blue badge, you may be entitled to a disabled parking bay outside your house as long as you do not already have off street parking. Ask for a form from the Blue Badge Section at West Sussex County Council. Itâ€™s important to note although it will be outside your house, the parking bay is available for use by anyone who has a blue badge. Free Bus Pass Children over five who have a disability may be eligible for a free bus pass. To check the eligibility of your child call your local council.
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Social and Leisure Activities
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Social and Leisure Activities
8. Social and Leisure Activities When we started having children, we expected to have ordinary, family lives. But at some point, having a child with special needs challenged our ideas about how family life would be. Relationships with partners, coping as single parents, or keeping the peace between siblings all became more of a challenge. When you have to make time for endless appointments, phone calls or therapy sessions it takes a juggler to find any time for ordinary things, especially if you have other children. Many of us found it difficult at first to get any sense of normality. But we realised how important it was to try to do things as a family. “You have to realise that this is just one child in your family, and you are a family and you all count, each one of you counts. You focus so much on your special needs child that everyone else goes out of the window, and it’s getting a sense of proportion again”
Being a family means different things to different families - not everybody fits the nuclear family stereotype. Many of us also have to struggle with feelings of isolation as a single parent. Being the parent of a child with special needs can reinforce those feelings, especially if your child’s condition makes it difficult to ‘fit in’. Often parents who have children with similar conditions to yours are easier to be with and a good source of ideas on things to do. We know that getting out and about can feel hardly worth the effort. ‘How will I get there?’, ‘Will he embarrass everyone?’, ‘Will we be accepted?’, ‘How will I deal with problems in public?’, ‘What will access be like?’. However, finding social activities you can enjoy together can help restore normality. Most of us have found places where everyone can join in – the local swimming pool or park, local farms, zoos or quieter beaches where no-one will mind if your child’s behaviour is difficult.
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“We usually go to Drusillas. I feel sorry for my oldest sometimes, because he’s almost like an only child, he really wants someone along to play with. So we always take his cousin with us: they get on brilliantly together and she’s also brilliant with Alex, my special needs child, and it’s so lovely to see her included as well, instead of just being ignored.” Did You Know?
There is an inclusive BMX track in Crawley and a cycle track in Worthing both of which cater for children with special needs
Choosing Leisure Activities Like everyone else, children with special needs want to have a social life and take part in activities they enjoy. But as a parent you want to know that they will be welcome, safe and supported. And if you have other children it’s important they are enjoying themselves too! When you are thinking about new activities you may have lots of questions. What will happen if my child has a tantrum? Is there a
safe place to let off steam? What are the rules? Are they fair and make sense to children? What’s in place to help a child deal with disappointment? Will my child be encouraged to do as much as they can for themselves but not left to struggle with things they can’t manage, or allowed to take unreasonable risks? If you ask all your questions at the same time, it may feel like your child is too hard to include. So sometimes it’s useful to sit and see how a session runs. Written policies are fine, but what happens in practice is more important. Also, ask other children, young people and parents what they think. Their views might offer different perspectives that enrich your impressions. Don’t dismiss a club because parents are required to stay. Some of the best activities are organised by other parents and volunteers who cannot take responsibility for supervising children who need the toilet or want to sit out for a bit. Sometimes you have to balance the value of a free or inexpensive opportunity for your
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child against the chance to have a break yourself. Anyway, these are often the places to meet other parents and exchange advice and support. It’s important to remember that children just want to make friends and have fun. It’s easy to get hooked up on rules, structure and learning outcomes. Encourage your child to think about what they want – things that might seem insignificant to us might make a big difference to them. Once they’ve joined an activity ask your child how things are going and listen to them – if not in words, they may tell you through their behaviour what they do and don’t enjoy.
Local Activities No list can cover all the possibilities. This section includes some activities that we have found to be inclusive and open to all; some have been set up where children with and without special needs can have fun together; others are specifically for children and young people with disabilities.
All children are different, so it will be important for you to contact these groups yourself so that you can get more detail and decide whether your child would like to go along.
Babies, Toddlers and Under Fives Your child will probably enjoy many of the activities available locally for this age group, such as toddler groups, soft play centres, music groups and gym clubs. The Family Information Service has details of a range of toddler groups in the county. They also have a directory of Toy Libraries which are based in Children & Family Centres across the county. You can find your local toy library by calling the FIS on 01243 777807. It’s £2 to join if you are a parent or carer. There are no additional costs for borrowing items. “Something I do with Jane, and I’ve found it has been absolutely brilliant, has been a music group - it’s for under fives and she loves it. “
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There are several projects and facilities available to young children with special needs in West Sussex: Camelia Botnar Children’s Centre (Worthing): provides a free of charge child-minding service to under 5’s from Worthing and the surrounding areas. Tel: 01903 504077 Chestnut Tree House (nr. Arundel): provides day care and short-breaks to parents whilst children are entertained at their impressive grounds near Arundel. Facilities include wet and dry play areas, swimming pool, music room, sensory room, etc. Tel: 0845 450 5820 East Grinstead Opportunity Play: play group for under 5’s with special needs which meets Monday, Wednesday and Friday mornings, 9.30-12.30. Tel: 01342 323215 Gym Joeys (Bognor Regis): preschool gymnastics to help children develop gross motor skills. Welcomes children with special needs. Classes are provided at lo-
cations in Bognor, Chichester and Littlehampton. Tel: 07799 836341 Kangaroos (Haywards Heath): provide a Saturday play-group at the Yews Community Centre for children with special needs aged 3-7 called Honey Pots. Tel: 01444 255120 The Nursery Playgroup (Haywards Heath): Pre-school specialising in working with children who have additional needs particularly around speech, communication and behaviour. Open daily, 9.3012.30. Tel: 01444 412367 Springboard Project (Horsham): Run a monthly playgroup (Sunday afternoon) called Bunny Hoppers for under 5’s with special needs. They also run ‘play ‘n stay’ family groups called Cheeky Monkeys who use the centre 10am – 5pm Monday to Fridays. They also have their own toy library. Tel: 01403 218888 SNAPS (Worthing): Parent and toddler group which meets on first and 3rd Fridays in the month (term-time). Tel: 01903 207024
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Social and Leisure Activities
Windmills Opportunity Preschool (Burgess Hill): Pre-school for all children but particularly those who “require additional support”. Open Tuesday – Fridays, 9.45 – 12.15. Tel: 01444 233724
School Age Children Some children with preparation are able to join clubs such as guides and scouts, just like other children. Many of these groups will have advisers for parents of children with special needs who can help you find a suitable ‘pack’ locally.
Here are some suggestions that may suit your child: -
Joining a new club is scary, especially for children who look different, or who have difficulty making themselves understood or making sense of new situations. Talk to the staff about how your child can be helped to feel comfortable. Your child might want to think about how they would like to be introduced and whether they’d like to do this themselves. They might find it helpful to go along with a companion to help them join in. There are other local activities
which your child might enjoy if planned carefully. There are also activities which are specially set up for children with special needs, or which deliberately include them with other children. Many of our children have enjoyed integrated summer play schemes or social, sports or arts clubs. Sometimes all the family can join in together, sometimes our children are able to make friends away from us.
Adur Special Needs Project (Shoreham): Various playgroups and clubs for 5 to 18 year olds with special needs in Shoreham and surrounding areas. Tel: 01273 441866 Adventure Unlimited (Brighton): Inclusive adventurous activities. The 818 Club has a calendar of events for 8 to 18 year olds which are integrated. They can offer individual support if notified in advance. Tel: 01273 681058. Allsports (Mid-Sussex): afterschool sports club for children
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aged 6-19 who either attend Court Meadow School in Cuckfield or are members of Kangaroos, the charity which runs the club. Tel: 01444 255120
Inclusive Multi Sport Club (Chichester): basketball, racquet sports, fencing, cricket, etc. for children with and without disabilities. Meets fortnightly on a Sunday at Westgate Leisure Centre. Tel: 01243 785651
Coombes Farm (Lancing): provides tours of the farm from March through to October. In March-April visitors can watch the lambing over 1,000 ewes! Tel: 01273 452028
Lodge Hill (Pulborough): Accessible Ec0-Lodge and activity centre which includes facilities for disabled people. Tel: 01798 831411
Crawley BMX Track: inclusive BMX track which includes specially adapted bikes and the help of part-time instructors. Tel: 01293 585350 Drusillas (Alfriston, East Sussex): A small zoo with other entertainment and activities for children. Tel: 01323 874100 Enable Me (County wide): Inclusive after school and holiday sports clubs for disabled children and young people and their siblings/friends, aged 5-19. Tel: 01903 734400 Guides Association: Have a special needs advisor who can help finding the right unit for your daughter. Tel: 01243 553592
Mohair Centre Holiday Workshops (Lewes, East Sussex): Offers a mix of looking after animals and farm based crafts, often with a seasonal theme. Very welcoming and used to including children aged 5 to 15 years with extra difficulties. The centre is near Chiddingly/Lewes. Tel: 01825 872457 Moving Barriers Club (Crawley): sports and activities for children and young people with disabilities living in or near Crawley. Meets at the K2 Leisure Centre in Crawley every Friday, 5-7.30 pm. Tel: 01293 585350 MXT Swimming School (Chichester, Storrington and Steyning): Has special needs swim teachers
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experienced in working with children with Autism, Muscular Dystrophy, ADHD, Dysphasia, Dyspraxia and Cerebral Palsy. Tel: 01903 532765
Southern Area Disability Sports Group (Worthing & Adur): sporting activities for children and young people with disabilities aged 5-16. Tel: 01903 778328
Olympos Marlins Swimming Club (Burgess Hill and Haywards Heath): two swim clubs for children and adults with disabilities â€“ Starfish class based at the Dolphin Leisure Centre in Haywards Heath and Dolphins class who are based at the Triangle in Burgess Hill. Tel: 01273 833582
Sussex Otters Swimming Club (Chichester): swimming club for children and adults with disabilities. Meets on a Saturday, 4.30 - 5.30 pm at Westgate Leisure Centre. Tel: 01243 785651.
Riding for the Disabled: Local groups in Arundel, Chichester and Crawley Down. Tel: 0845 658 1082 or 0845 450 7046 Scouts Association: for further information on local cubs and scout groups, Tel: 0845 300 1818 Seagulls Specials (Brighton): football and sports for disabled children and adults. Meets fortnightly on a Saturday in Portslade. Tel: 07919 051848. Shine (Hurstpierpoint): Inclusive theatre group for children and young people aged 5-19. Tel: 01273 832855 or 07941335807
Sussex Wasps (Brighton): Sports club for people with disabilities, 8+ years. Tel: 01273 701235. Teenscene Youth Club (MidSussex): after-school club in Hassocks for children aged 13-19. Includes some places for siblings and 1:1 support for children with more complex needs. Tel: 01444 255120 Time Aside (County Wide): Sensory art workshops for health, esteem and communication needs held at various venues. Tel: 07792903236 or 07967828654 Tuesday Group (Rustington): after-school club for young people with learning difficulties. Meets
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every Wednesday 5.30 – 7.30 pm at Rustington Youth Centre. Tel: 01903 502850
Teens and Young Adults
You Can Do It! (Horsham): Parent led inclusive sports and arts activities for children with special needs, their friends and siblings in Horsham and the surrounding areas. Tel: 07734231052
All Sports Club (Chichester): sports club for over young people over 16 with any disability. Meets at The Venue on Wednesdays, 6 – 7.30 pm.
Many of the suggestions we have made for school age children We Play Too (Worthing): Inclualso cater for young people up sive special needs playground for to 18. Older children, even those children and young people with with very complex needs often and without special needs based thrive on integrated adventure at Brooklands Leisure Park. A and activity holidays. Many of the recent addition to the facilities local parent-run disability groups there include a purpose built cycle arrange social and play activitrack and specialised bikes for ties. The following includes a few hire. Tel: 07712 202100 more ideas.
“I try to let Christina do the things that ordinary children take for granted - I try to make it possible for her to go to the park, we do swimming, we go horse-riding every week when she’s on holiday.” Did You Know?
You Can Do It! based in Horsham is a parent led charity which delivers inclusive arts and sports projects for children with special needs, their siblings and friends
Ariel Othello’s (Burgess Hill): Dance, drama, music and singing for children with special needs aged 7-19. Meets Saturdays 8.45 – 9.45 am. Tel: 01444 250407 Arun Dolphin’s Swimming Club (Littlehampton): for children, young people and adults with physical, sensory or learning disabilities. Meets on Wednesdays, 6.30 – 7.30 pm. Tel: 01903 726531.
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Arun Sports Association for the Disabled (Bognor Regis): variety of sports for people with disabilities aged 9+ in Bognor, Chichester and Littlehampton. Tel: 01243 583868 Blue Umbrella Clubs: Club nights and out-reach for young people and adults with learning disabilities. Five clubs are active in Bognor, Crawley, Haywards Heath, Horsham and Worthing. Tel: 01403 215216 Carousel (Brighton): Integrated, creative arts projects and groups for young people with and without learning disabilities including film, dance, music and club nights. Run the Blue Camel Club and Oska Bright Film Festival. Tel: 01273 234734
Flamingoes Club (Crawley): Swimming club for people with physical disabilities. Meets every Tuesday, 7.45 â€“ 8.45 at Crawley Leisure Centre. Tel: 01293 585350 Gateway Club (Crawley): social club for people with physical and learning disabilities aged 16-60. Meets every Tuesday at the K2 in Crawley. Tel: 01293 516703 Sussex Phab (Chichester, Crawley, Haywards Heath and Steyning): Integrated social clubs for physically disabled and non-disabled people. Tel: 01825 749826 Seagull Specials (Brighton): Football and sports for disabled children and adults. Meets fortnightly on a Saturday in Portslade. Tel: 07919051848.
Cobnor Activities Centre (Chichester): Water activities centre for anyone with a disability. Tel: 01243 572791
Sussex Wasps (Brighton): Sports club for people of all ages with disabilities. Tel: 01243 701235. Email: firstname.lastname@example.org
Ferring Country Centre: (Worthing): Riding lessons/therapy for children and adults with physical and learning disabilities. Tel: 01903 245078
Sussex Sonics Wheelchair Basketball Club (Brighton). Wheelchair Basketball club for people with disabilities. Tel: 01273 307505
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Buddy Schemes A number of organisations now run buddy schemes which enable disabled children and young people to access projects and services in their community via the help and support of a volunteer buddy. Like after-school clubs these types of schemes also enable parents and carers to take a break. Autism Sussex (County Wide): provide a buddy scheme for 0-19 years olds with Autism. Tel: 01424 773366 Rainbow Trust (County Wide): 1-2-1 short-breaks for children and young people aged 0-19 with life limiting or a life threatening condition. Tel: 023 8023 2129 Smile (Arun, Chichester, Crawley, Horsham and Mid-Sussex): 1-2-1 support services for up to 5 hours per week for disabled children and young people. Tel: 01903 787614 Springboard Project (Crawley & Horsham): run a buddy scheme for 12-18 year olds on weekday evening and during school holidays. Tel: 01403 257699
Spurgeons: Buddy scheme for 2 hours per week for up to six months for disabled children and young people aged 5-19. Tel: 01903 719515
Other Leisure Ideas for All Ages Local There are a number of nearby places that we have found very enjoyable for our children and for a day out with the whole family â€“ Drusillas Zoo at Arundel, Fishers Farm at Wisborough Green, Washbrooks Farm at Hurstpierpoint, the Wildfowl and Wetlands Trust at Arundel and Tilgate Park in Crawley. This is just a small list so ask other parents as they are often the best source of ideas. Regular Autism-Friendly Screenings take place at the Duke of Yorks cinema in association with Brighton based charity, Amaze. The lights and sound are turned down low and the audience is free to get up and move about as they please. Itâ€™s a great way of
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Social and Leisure Activities
introducing any child with special needs to the delights of going to the cinema. If your child is interested in sports activities, the English Federation of Disability Sport is a one-stop shop for information about different sports opportunities for disabled children and adults. There are a few swimming clubs in West Sussex specifically for disabled children and adults, for example, the Flamingoes Club which meets at Crawley Leisure Centre or the Arun Dolphin’s Swimming Club in Littlehampton. There is a hydrotherapy pool at the Sussex Lantern in Brighton and aquatherapy sessions take place at the Wadurs pool in Shoreham. Chestnut Tree Children’s Hospice and Angmering Secondary School also have hydrotherapy pools. Did You Know?
The Cinema Exhibitor’s Association Card entitles a carer of a disabled child with a free ticket to accompany them to the cinema
National There are several national organisations which some of us have found very useful, such as ‘Kids’ (inclusive play for children with special needs and disabilities) and Action for Leisure, who have a number of fact sheets about different aspects of play; for example, a list of where to get toys (like dolls, jigsaws etc.) which show children with different disabilities. There are also a number of organisations we’ve come across that help with gentler activities at home. Letterbox Library is a bookclub which specialises in multi-cultural books, and they also have a whole selection of books that feature children with special needs as characters. Listening Books is an audio book library that charges a membership fee for its catalogue and postage costs. If you’re going away from Sussex, it’s definitely worth finding out from disability organisations in the area you’re visiting what’s going on there for children with - 127 -
special needs. In London, Artsline can tell you about access to places you want to take your child to, and also about special events and activities for disabled children. Many of the larger themed parks like Legoland and London Zoo offer concessions and also organise special days for disabled children and their families, so contact them directly for details. “I suddenly realised that she never came across disabled children in story books or on the TV. That’s terrible! I want her growing up seeing positive images of children like her doing all sorts of exciting things ... I want her to achieve whatever she wants to achieve ... “
ganisations who can point you in the right direction. Tourism for All has travel advice and transport information for disabled people and can help you plan your journey. They also have a lot of information on all kinds of family holidays, as well as holidays for children with special needs without their parents. The 3H fund run subsidised group holidays for physically disabled children and Break provides holidays in Norfolk for children and adults with learning disabilities. Happy Days charity also funds and organises holidays and days out for families with children with special needs aged 3-17.
We all feel in need of a break every so often, but sometimes the thought of all the planning makes it seem too much effort. What sort of places don’t mind children who wake in the middle of the night, try to escape, behave boisterously?
Contact a Family has a list of holiday ideas, as do RADAR and Mencap Holiday Services, including activity holidays for disabled children. The classified section of Disability Now magazine always has lots of adverts for holidays, and there are regular features about good places to go if someone in your family or group has a disability.
There are however several or-
More and more travel agents
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Social and Leisure Activities
are able to provide better information on facilities for disabled people, as they begin to realise there’s a big market out there. The website www.disabledgo. co.uk also provides up-to-date information on the accessibility of public venues and holiday accommodation throughout the UK.
If money is very tight try applying to the Family Fund for a grant towards a holiday. You should also look at the grants directory we have compiled at the back of this book as a number of the funders listed have a specific interest in granting holidays to children with special needs and their families.
You need to ensure your child’s needs will be catered for, and it may be worth asking for these arrangements are confirmed in writing. It’s amazing how many people still think that an entrance up half a dozen steps is accessible for a wheelchair user! You should also make sure that any insurance you take out is appropriate – in the small print you might find that ‘pre-existing conditions or illnesses’ are not covered. If that’s the case, there are policies which are better and you can find out about them from Tourism for All or RADAR.
“We went on holiday to Center Parcs and if you go at the right time of year – we went in January – it is reasonably priced. The whole of the main complex is centrally heated, so it’s not like going in and out of the cold all the time, and for her, that’s what she needed.”
“It has taken me quite a bit of time to adjust to the need to do all this preparation, but then it’s been worth it because it’s made our holidays easier and I’m less stressed.”
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Essential Contacts Carers Support Services
Action Against Bullying Support Line (WSCC)
Worthing & District: 01903 536378 Bognor, Chichester & Rural: 01243 537011 North & Mid-Sussex: 01293 657040 Web: www.westsussexcarers.org.uk
Tel: 0845 075 1010 Advisory Centre for Education (ACE) Tel: 0808 800 5793 Email: email@example.com Web: www.ace-ed.org.uk
Child Development Centres
Exclusions Advice: 0808 800 0327 Exclusions Information: 020 7 704 9822 (24 hour answering machine) Benefit Enquiry Line
Chichester: 01243 815218 Crawley: 01293 600351 Worthing: 01903 286702 Child Disability Teams (WSCC) CDT North (Horsham, Crawley & Mid Sussex): 01403 246450 CDT South West (Arun & Chichester): 01243 642424 CDT South East (Worthing & Adur): 01903 839015
Tel: 0800 88 22 00 Blue Badge Scheme (WSCC) Tel: 01243 777653 Carers Allowance Unit
Children & Adolescent Mental Health Services (CAMHS)
Tel: 0845 608 4321
Tel: 0800 859929 (Freephone) Email: firstname.lastname@example.org
Chichester: 01243 622530 East Grinstead: 01342 324183 Haywards Heath: 01444 472670 Horsham: 01403 223344 Worthing: 01903 286754
Carers Emergency Respite Care Scheme
Children & Young Peopleâ€™s Social Care (WSCC)
Tel: 01403 243924 Email: email@example.com
Tel: 01243 642555 Email: firstname.lastname@example.org
Carers Emergency Alert Card Scheme
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Children’s Centres Angmering & Rustington: 01903 276893/4 Bewbush (Crawley): 01293 651760 Billingshurst: 01403 213594/5/6 Bognor: 01243 642924 Boundstone (Lancing): 01903 276850 Broadfield (Crawley): 01293 651777 Chichester: 01243 642950 Crawley: 01293 511400 Durrington (Worthing): 01903 276888 East Grinstead (Blackwells): 01342 332992 East Grinstead (Library): 07540 642258 East Preston (Littlehampton): 07710415071 Felpham (Bognor): 01243 642882 Findon Valley (Worthing): 01903 270455 Footprints (Worthing): 01903 276807 Gattons (West Burgess Hill): 01444 255480 Haywards Heath: 01444 255499 High Beeches (Haywards Heath): 07540 674935 Horsham: 01403 224444 Hundred Acre (East Grinstead): 01342 332992 Kingston (Shoreham): 01273 467998 Laburnham (Chichester): 01243 642920 Lancing: 01903 276898 Langley Green (Crawley): 01293 651747 Little Footsteps (Storrington): 01903 270444 Lyndhurst (Worthing): 07595 237664 Maidenbower (Crawley): 01293 651720 Maybridge (Worthing): 01903 276890
Midurst: 01730 716699 Northgate: 01293 651740 Petworth: 01798 871199 Pound Hill (Crawley): 01293 651722 Pulborough: 01798 871193/4 Roffey (Horsham): 01403 213599 Rural Chichester: 01243 642995/6 Rural Haywards Heath: 01444 255490 Rural Henfield: 07540 671870 Rural Horsham: 01403 785816 Selsey (Chichester): 01243 642906 Sidney West (Burgess Hill): 01444 255493 Southbourne (Chichester): 07515332307 Southgate (Crawley): 01293 651798 Southwater (Horsham): 01403 213570 Steyning: 07540 671870 Sussex Downs (Hassocks): 07515 332725 The Needles (Horsham): 01403 213590 The Treehouse – Laburnum Grove (Bognor): 01243 642917 The Treehouse – Richmond Avenue (Bognor): 01243 642900 The Villages (Arundel): 01243 642958 The Wave (Worthing): 01903 276869 Worthing: 01903 270412
Community Equipment Service Tel: 0845 127 2933 Email: email@example.com Collections: firstname.lastname@example.org Citizens Advice Bureau Tel: 0844 477 1171 Web: www.citizensadvice.org.uk - 131 -
Essential Contacts Connexions
Worthing: 01903 239999 www.worthing.gov.uk
Chichester: 01243 771666 Crawley: 01293 528374 Horsham: 01403 261465 Worthing: 01903 205612
Family Fund Tel: 0845 130 4542 Email: email@example.com Web: www.familyfund.org.uk
Connexions Direct: 0800 001 3219 Web: www.connexions-direct.com
Family Information Service (WSCC)
Contact a Family
Tel: 01243 777807 firstname.lastname@example.org www.familyinfoservice.westsussex.gov.uk
Tel: 0808 808 3555 (Helpline) Email: email@example.com Web: www.cafamily.org.uk
Fun & Breaks
Crossroads Care (West Sussex) Tel: 01903 790270 Web: www.crossroadscarewestsussex.org Disability Living Allowance Helpline Tel: 08457 123 456 District Councils Adur: 01273 263000 www.adur.gov.uk Arun: 01903 737500 www.arun.gov.uk Chichester: 01243 785166 www.chichester.gov.uk Crawley: 01293 438000 www.crawley.gov.uk Horsham: 01403 215100 www.horsham.gov.uk Mid-Sussex: 01444 458166 www.midsussex.gov.uk
Chichester & Arun: 01243 642462 Crawley, Horsham & Mid-Sussex: 01403 246467 Worthing & Adur: 01243 642318 Home Start Arun: 01903 889707 Email: firstname.lastname@example.org Chichester & District: 01243 773477 Email: admin@home-startchichester. org.uk Crawley & Horsham: 01293 416327 admin@home-startcrawleyandhorsham. org.uk Worthing & Adur: 01903 236916 Email: email@example.com ICIS (Information for Life) Tel: 0800 859929 (Freephone Helpline)
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Email: firstname.lastname@example.org Web: www.icis-info4life.org.uk
Portage Chichester: 01243 536182 Crawley: 01293 615325 Mid-Sussex & Horsham: 01444 243150 Worthing: 01903 242558
NHS Direct Tel: 0845 4647 (24 hours per day) Web: www.nhsdirect.nhs.uk
Sensory Impairment Services
NHS South East Coast (Strategic Health Authority)
Tel: 01243 642555 Email: as.sensory.services.duty@ westsussex.gov.uk SMS: 07736 093462
Tel: 01293 778899 Email: email@example.com NHS West Sussex (Primary Care Trust)
Sussex Partnership NHS Foundation Trust (Mental Health)
General: 01903 708400 Customer Services: 0300 100 1821 Email: customerservices@ westsussexpct.nhs.uk Web: www.westsussex.nhs.uk
Tel: 01903 843000 Email: firstname.lastname@example.org Web: www.sussexpartnership.nhs.uk West Sussex County Council
OT Connect Service (Occupational Therapy) Tel: 01903 839100 Email: email@example.com Out of Hours GP Service In the event of a serious medical need or urgent health problem:
24 Hour Information Line: 0845 758 1232 General Enquiries: 01243 777100 Benefits Helpline: 0845 075 1020 Child Protection: 01243 642555 Complaints: 0845 075 1014 Ethnic Minority Helpline: 08457 581649 West Sussex Wheelchair Service
Tel: 0300 130 1313 Parent Partnership Service Tel: 0845 075 1008 firstname.lastname@example.org
Chichester: 01243 531268 Worthing: 01903 846500 Horsham: 01403 227000 (Ext 7160)
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Local Directory Action for Deafness
5a Hazelgrove Road Haywards Heath, RH16 3PH
The Bradbury House 6 Station Road East Grinstead, RH19 1DJ
Contact: Angela Newton, Resource Centre Manager
Tel: 01342 311137 Email: email@example.com Web: www.scotsontechnique.com
Tel: 01444 415582 Email: firstname.lastname@example.org Web: www.actionfordeafness.org.uk Provides advice, support, information and services to enable Deaf, deafened, hard of hearing and deafblind people to lead independent lives. Adur Special Needs Project
Adventure Unlimited 64 Edward Street Brighton, BN2 0JR Tel: 01273 681058 Email: email@example.com Web: www.aultd.org
East Wing Entrance Civic Centre Ham Road Shoreham by Sea, BN43 6PR Tel: 01273 441866 Web: www.adurspecialneedsproject.com Out-of-school respite and recreational activities for young people with special needs aged from 5 years.
Teaching institute for parents in the methods of the Scotson Technique which seeks to enhance oxygen supply to the body tissues in people with cerebral palsy.
Activities and social events for 8-18 year olds with and without special needs. All Sports Club Contact: Mrs Liz Spandley Tel: 01243 779075 Email: firstname.lastname@example.org Disabled sports club for people aged 16+
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Ariel Othelloâ€™s Oakmeeds Community College Station Road Burgess Hill, RH15 9EA Contact: Sue Jay, Head of Creative Arts Tel: 01444 250407 Email: email@example.com Web: www.arieldramaplus.co.uk Drama academy for children with special needs. Arun Dolphinâ€™s Swimming Club 3 Scott Lodge York Road Littlehampton, BN17 7DR Contact: Miss Joyce Adams, Secretary Tel: 01903 726531 Email: firstname.lastname@example.org Swimming club for people with sensory, physical or learning disabilities Arun Sport Association for the Disabled 14 Homefield Avenue Bognor Regis, PO22 6AN
Contact: Mrs K M Allen, Honorary Secretary and Chair Tel: 01243 583868 Sports club for disabled people aged 9+ Autism Sussex Sussex House Tills Courtyard 19 High Street Battle, TN33 0AE Contact: Jean Rose, Chief Executive Fabrizio Donati, General Manager Tel: 01424 773366 Web: www.autismsussex.org.uk Provides a range of services for children, young people and adults with Autistic Spectrum Conditions or Aspergers Syndrome Autism & Asperger Action Contact: Elaine Whitlock, Nikki Hall Tel: 01903 244209 or 01903 211725 Email: email@example.com Web: www.aaaction.ukf.net Group of families, carers and professionals lobbying for the implementation of appropriate services for adults in West Sussex - 135 -
Local Directory Belltree Music Therapy Centre
Contact: Nick Jenkins, Community Development Officer (Arts)
Ash Cottage Warren Road Brighton, BN2 6DA
Tel: 01403 215216 Email: firstname.lastname@example.org
Contact: Tina Warnock, Head of Service
Club nights and outreach programme for young people and adults with learning difficulties
Tel: 01273 681691 Email: email@example.com Web: www.belltree.org.uk
Camelia Botnar Childrenâ€™s Centre
Professional music therapy for people of all ages from Brighton & Hove and Sussex
Wellesley Avenue Goring by Sea Worthing, BN12 4PN
Tel: 01903 504077 or 01903 505564
The Willows Deans Meadow Barcombe, BN8 5DX
Day care service for under 5â€™s with special needs in Worthing Carers Support Service (Worthing & District)
Contact: Rosemary Milmine, Manager Tel: 01273 400752 Email: firstname.lastname@example.org Web: www.bevernview.org Purpose built home for young adults with profound disabilities Blue Umbrella Club Park North North Street Horsham, RH12 1RL
Methold House North Street Worthing, BN11 1DU Contact: Hari Chhokar, Service Manager Tel: 01903 536378 Email: email@example.com Web: www.carerswsx.org.uk Information, training and support to carers
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Carers Support Service (Regis, Chichester & Rural)
Contact: Julia Roberts, Programme Manager
60a North Street Chichester, PO19 1NB
Tel: 01273 234734 Email: firstname.lastname@example.org Web: www.carousel.org.uk
Contact: Richard North, Service Manager Tel: 01243 537011 Email & Web: email@example.com www.carerssupportservice.org.uk Information, training and support to carers Carers Support Service (North and Mid-Sussex) The Orchard 1-2 Gleneagles Court Brighton Road Crawley, RH10 6AD Tel: 01293 657040 Web: www.carerssupport.org.uk Information, training and support to carers Carousel Community Base 113 Queenâ€™s Road Brighton, BN1 3XG
Arts organisation for children and adults with learning disabilities Chailey Heritage Clinical Services Beggars Wood Road North Chailey Nr Lewes, BN8 4JN Tel: 01825 722112 Clinical care services for children with complex and multiple physical disabilities Chanctonbury Community Play Scheme The Pigeon House Northend Findon Worthing, BN14 0RQ Contact: Chris Woodcock, Chairperson & Co-ordinator Email: firstname.lastname@example.org Web: www.ccps-sussex.org.uk Respite care and holiday play scheme for children with special needs aged 5-19 - 137 -
Local Directory The Cherries
Child Development Centre (Chichester)
Summersdale Road Chichester, PO19 6PL
Westhampnett Centre 28-29 Westhampnett Road Chichester, PO19 7HH
Tel: 01243 778103 Purpose built bungalow providing respite care for children in Chichester with severe to profound learning disabilities, life threatening illnesses or associated health needs. Chestnut Tree House Children’s Hospice
Tel: 0845 450 5820 Web: www.chestnut-tree-house.org.uk Children’s hospice for children and young people aged 0-19 with progressive life limiting or life threatening illnesses from West Sussex.
Orchard Street Chichester, PO19 1DQ Tel: 01243 536182
Multi-disciplinary children’s clinic Child Development Centre (Crawley & Horsham) Crawley Hospital West Green Drive Crawley West Sussex, RH11 7DH
Dover Lane Poling, BN18 9PX
Tel: 01243 793639
Tel: 01293 600300 Multi-disciplinary children’s clinic Child Development Centre (Mid-Sussex) Nightingale Primary Care Centre, 2nd Floor Butlers Green Road Haywards Heath, RH16 4BN Tel: 01444 414100 Email: email@example.com Multi-disciplinary children’s clinic
Pre-school educational service for children with special needs
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Child Development Centre (Worthing)
Complimentary therapies for children from Brighton and Sussex.
Worthing Hospital Lyndhurst Road, Worthing, BN11 2DH
Children’s Continence Team
Tel: 01903 286720 Multi-disciplinary children’s clinic Child Disability Teams CDT North (Horsham, Crawley and Mid-Sussex) Phone: 01403 246450 Email: firstname.lastname@example.org CDT South East (Worthing & Adur) Phone: 01903 839015 Email:email@example.com CDT South West (Arun & Chichester) Phone: 01243 642424 Email: firstname.lastname@example.org Social Work teams for children with special needs Children’s Clinic 14/15 New Road Brighton, BN1 1UF Tel: 01273 324790 Web: www.thecildrensclinic.org.uk
The Flat Zachary Merton Hospital Rustington West Sussex, BN16 2EA Tel: 01903 858111 Children’s Continuing Care Service Helen Neve Manager Unit L, Downlands Business Park Lyon’s Farm Worthing, BN14 9LA Tel: 01903 846518 Email: Helen.Neve@westsussexpct.nhs.uk Toilet training and specialist clinics to help children become continent. Circles Network Suite A, KBF House 55 Victoria Road Burgess Hill, RH15 9LH Contact: Angel Butcher, South East of England Co-ordinator Tel: 01444 236593
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Local Directory Email: email@example.com Web: www.circlesnetwork.org.uk Support and advocacy for people who are disadvantaged or marginalised Coastal Enterprises
Community Childrenâ€™s Nursing Team (North) 6th floor Crawley Hospital West Green Drive Crawley, RH11 7DH Contact: Chris Morris, Community Childrenâ€™s Nursing Team Lead
Brougham Road Worthing, BN11 2NU
Tel: 01293 600300
Tel: 01903 212430 (Worthing Project) 01903 859453 (Rustington Project) Email: firstname.lastname@example.org Web: www.coastal.ukf.net
Home and community based nursing for children and young people aged 0-18 Community Equipment Service
A family of business ventures designed to create work and training opportunities for people with a variety of special needs
The Annexe Horsham Hospital Hurst Road Horsham, RH12 2DR Contact: Penny Keynton-Hook, Community Equipment Services Manager
Cobnor Activities Centre Cobnor Point Chidham Chichester, PO18 8TE
Tel: 01403 227000 (ext 7616) Email: Penny.keyntonhook@ westsussexpct.nhs.uk Provides patients with specialised equipment for use at home.
Tel: 01243 572791 Email: email@example.com Web: www.cobnor.com Outdoor activities centre for children and young people with and without special needs
Cool2Care Woodbury Littleford Lane Shamley Green Surrey, GU5 0RH
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Contact: Jacqui Parfitt, Family Liaison Manager
Crawley Opportunity Playgroup
Tel: 07872502751 Email: Jacqui.firstname.lastname@example.org Web: www.cool2care.co.uk
The Hut St. Francis of Assisi School Southgate Drive Crawley, RH10 6HD
Recruits, trains and provides care workers to families of children and young adults with special needs
Tel: 01293 546822
Church Farm Coombes Lancing, BN15 0RS
Furnace Drive Furness Green Crawley, RH10 6JG
Contact: Jenny Passmoore, Owner & Organiser
Tel: 01293 615325
Playgroup for children with special needs
Tel: 01273 452028 Email: email@example.com Web: www.coombes.co.uk Community farm famous for its lambing Connexions Chichester: 01243 771666 Worthing: 01903 205612 Horsham: 01403 261465 Crawley: 01293 528374 Information, advice and careers support for young people aged 13-19
Pre-school educational service for children with special needs Crossroads Care West Sussex Tele Cottage Horsemere Green Lane Climping Littlehampton, BN17 5QZ Contact: Mrs Tracey Hole, Manager Tel: 01243 830797 Web: www.crossroads.org.uk/westsussex Provides services including respite to carers and the people they care for
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Local Directory Cruse Bereavement Care
Worthing: 01903 205900 Chichester: 01243 530202 Mid-Sussex: 01293 531191
Alfriston Road Alfriston East Sussex, BN26 5QS
Counselling, information and support to bereaved people
Tel: 01323 874100 Email: firstname.lastname@example.org Web: www.drusillas.co.uk
Dolphin House Charity
Childrenâ€™s zoo and activity park
Tel: 01273 324790 Email: email@example.com Web: www.dolphinhouseclinic.com
Early Birth Association
Provides a range of complimentary therapies to babies, children and young people downsyndrome OK c/o 28 Stopham Road Maidenbower Crawley, RH10 7JF
Tel: 01273 696955 (ask for TMBU) Email: firstname.lastname@example.org Web: www.earlybirth.co.uk Support group for parents of children at the Thomas Mann Special Care Baby Unit at the Royal Alexander Childrenâ€™s Hospital in Brighton East Grinstead Opportunity Playgroup
Contact: Paul Everington, Chairman Tel: 01293 889777 Web: www.downsyndromeok.org.uk Parent led charity providing support to families, professionals and people with Down Syndrome in Sussex, Surrey and South London.
Yarburgh House Highfield Road East Grinstead, RH19 2DX Tel: 01342 323215 Play group for children with special needs Enable Me The Dairy 3-5 Church Street Littlehampton, BN17 5EL
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Contact: Nik Demetriades, Project Manager Tel: 01903 734400 Email: email@example.com Web: www.enablemeproject.org.uk
Provides training and work experience for people with learning difficulties Fibromyalgia Support Group for Sussex and Surrey
Inclusive sports and activities for children with and without special needs and training in disability awareness
Horsham Group: 0844 887 2383 Selsey: 0844 887 2357 Worthing: 0844 887 2394
Expert Patients Programme
Support group for people with Fibromyalgia
The Annexe Horsham Hopsital Hurst Road Horsham , RH12 2DR
Finches 75 Folders Lane Burgess Hill, RH15 0DY
Contact: Rachel Howlett, EPP Administrator
Tel: 01444 245117
Tel: 01403 227000 (ext 7547) Email: firstname.lastname@example.org Web: www.expertpatients.co.uk
Fully adapted and accessible bungalow offering respite and outreach services for children with complex health needs
Training in self care for people with long-term health conditions
FIRST Visiting Team
Ferring Country Centre
c/o Early Childhood Service St. James Campus St. James Road Chichester, PO19 7HA
Rife Way Ferring Worthing, BN12 5JZ Tel: 01903 245078 Email: email@example.com Web: www.ferringcountrycentre.org
Tel: 01243 520828 Support childcare providers in the inclusion of children with special needs
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Local Directory Flamingoes Club
Contact: Lynda Guy, Chairman
c/0 the K2 Leisure Centre Pease Pottage Hill Crawley, RH11 9BQ
Tel: 01273 891963 Email: Lynda@glct.org.uk Web: www.glct.org.uk
Tel: 01293 585300
Days out for children with special needs
Swimming club for adults with physical disabilities
Grace Eyre Foundation
Fun & Breaks
36 Montefiore Road Hove, BN3 6EP
Chichester & Arun: 01243 642462 Crawley, Horsham & Mid-Sussex: 01403 246467 Worthing & Adur: 01243 642318
Contact: Jackie Reeve
Volunteer respite service for families of children with special needs Gateway Clubs Bognor Regis: 07986 884568 Burgess Hill: 07592 609785 Crawley: 01293 516703 East Grinstead: 01342 325883 Horsham: 01273 492465 Lancing: 01903 764647 Social club for adults with learning disabilities Golden Lion Childrenâ€™s Trust PO Box 400 Lewes, BN8 4RZ
Tel: 01273 740370 Email: firstname.lastname@example.org Web: www.grace-eyre.org Provides various services designed to help people with learning difficulties access community opportunities including work, sports, learning and leisure Guild Care (Ashdown Club) Methold House North Street Worthing, BN11 1DU Contact: Charlotte Brackley, Club Manager Tel: 01903 528607 Web: www.guildcare.org/The-Ashdown-Club
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Play and respite for children with special needs and their families in Worthing and the surrounding areas. Gym Joeys 15 Hatherleigh Gardens Bognor Regis, PO25 5HZ Contact: Anna or Joel King
Email: email@example.com Web: www.hacsg.org.uk Information, training and support to families of children who are ADHD/ Hyperactive ICIS
Tel: 07799 836341 Email: firstname.lastname@example.org Web: www.gymjoeys.com
35 Worthing Road East Preston Littlehampton, BN16 1BQ
Gymnastics designed to help improve motor and social skills in children with and without special needs
Tel: 0800 859929 (freephone) Email: email@example.com Web: www.icis-info4life.org.uk
Honey Pots Saturday Playgroup
Provides information on care and support services to people experiencing difficulties with life
c/o The Yews Community Centre 55 Boltro Road Haywards Heath, RH16 1BJ Tel: 07855 863037 Playgroup for children with special needs aged 3-7 Hyperactive Childrenâ€™s Support Group
Inclusive Multi-Sports Club Westgate Leisure Centre Via Ravenna Chichester, PO19 1RJ Contact: Amy Roots, Community Sports Development Officer
71 Whyke Lane Chichester, PO19 7PD
Tel: 01243 785651 Email: firstname.lastname@example.org
Contact: Sally Bunday, Founder & Director
Sports club for people with and without disabilities and their families and carers
Tel: 01243 539966
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Local Directory Independent Living Association
Tel: 01403 240002 Email: email@example.com Web: www.lanc.uk.com
Southfield House 11 Liverpool Gardens Worthing, BN11 1RY
Assessment and management of children with complex neurodevelopmental difficulties
Tel: 01903 219482 (helpline) Email: firstname.lastname@example.org Web: www.ilawestsussex.org
Provides information, care and support services designed to enable people with care needs to be independent Kangaroos
Provides support to the families of children with a visual impairment in East and West Sussex
Contact: Amy Watson, Manager Tel: 01444 255120 Email: email@example.com Web: www.kangaroos.org.uk Out of school activities for children and young people with special needs and their families Learning Assessment & Neurocare Centre
Contact: Pauline Latham, Centre Manager
Contact: Wendy Peek Tel: 01273 832267 Email: firstname.lastname@example.org Web: www.looksussex.co.uk
Priory Business Centre Syresham Gardens Haywards Heath, RH16 3LB
48-50 Springfield Road Horsham, RH12 2PD
51 Western Road Hurstpierpoint, BN6 9SU
MACS (Money Advice and Community Support Service) 24 Old Steine Brighton, BN1 1EL Tel: 01273 664000 Email: email@example.com Web: www.macss.org.uk Counselling, advice and support to people in Sussex who are having trouble managing their finances
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Mid-Sussex & Horsham Portage
Junction Road Burgess Hill, RH15 0PZ
K2 Leisure Centre Pease Pottage Hill Crawley, RH11 9BQ
Tel: 01444 243150
Contact: Matt Laird, Crawley Wellbeing Officer
Pre-school educational service for children with special needs Mid-Sussex Mencap
Tel: 01293 585350 Email: firstname.lastname@example.org
20 Allwood Crescent Wivelsfield Green Haywards Heath, RH17 7RP
Club for children and young people with disabilities from Crawley
Tel: 01444 471431 Email: email@example.com Web: www.midsussexmencap.org.uk Provides support, social activities and funding to people with learning difficulties
15 Strathmore Road Worthing, BN13 1PJ Contact: Mario Trichkov Tel: 01903 532765 Email: firstname.lastname@example.org Web: www.mxtswimschool.com
The Mohair Centre Brickfield Farm Laughton Road Chiddingly Lewes, BN8 6JG Tel: 01825 872457 Email: email@example.com Web: www.mohaircentre.co.uk Childrenâ€™s community farm
MXT Swimming School
Swimming lessons for children and young people with and without special needs aged 0-12 The Nursery Playgroup c/o the Yews 55 Boltro Road Haywards Heath, RH16 1BJ
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Local Directory Contact: Sandra Hutchinson, Supervisor
Parent & Carers Support Organisation (PACSO)
Tel: 01444 412367 Email: firstname.lastname@example.org
PO Box 58 Chichester, PO19 8UD
Playgroup for children with additional needs aged 1-5 in Haywards Heath
Contact: Val Evans, Office Manager, Jude Deneen, Play Manager Tel: 01243 533353 Email: email@example.com; firstname.lastname@example.org Web: www.pacso.org.uk
Olympos Marlins Swimming Club Tel: 01273 833582 Swimming club for children and adults with physical and/or learning difficulties in Burgess Hill and Haywards Heath
Social activities and short breaks for parents and carers of children with special needs in Arun and Chichester Parent & Family Care Foundation
Outreach 3 Way 47 Hurst Avenue Worthing, BN11 5NZ
Ifield Avenue Ifield Crawley, RH11 0JX
Contact: Brian Oâ€™Hagan, Project Manager
Tel: 01293 551627 Email: email@example.com Web: www.outreach3way.org Provides day-services, sheltered employment and housing for people with learning disabilities in Sussex and the South East.
Tel: 01903 502649 Email:firstname.lastname@example.org Web: www.parentandfamilycare.org.uk Information, training and counselling to parents and families of children with special needs in West Sussex
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Inclusive social activities and training for children and young people with and without disabilities
Parents for Autism Contact: Lindsey Butterfield Tel: 01903 538303 Email: email@example.com Web: www.parentsforautism.org.uk
Rainbow Trust Childrenâ€™s Charity
Support group for parents and carers of children with Autism Patient Advice & Liaison Service (PALS)
6 Cleeve Court Cleeve Road Leatherhead Surrey, KT22 7UD Contact: Margaret Story
Customer Service Unit NHS West Sussex 1, the Causeway Goring by Sea Worthing, BN12 6BT
Tel: 0238 023 2129 Email: Margaret.firstname.lastname@example.org Web: www.rainbowtrust.org.uk
Tel: 0300 1001821 Email: customerservices@ westsussexpct.nhs.uk
Provides emotional and practical support to families of children with life threatening or terminal illnesses
Information and advice service (including complaints) for NHS patients
Relate (Brighton, Hove, Eastbourne, Worthing and Districts)
58 Preston Road Brighton, BN1 4QF
Summit House 50 Wandle Road Croydon Surrey, CR0 1DF Contact: Janine Williams, South East & London Officer Tel: 01825 749826 Email: Janine.email@example.com Web: www.phab.org.uk
Tel: 01273 697997 Email: firstname.lastname@example.org Web: www.relate4u.org Counselling and training for parents, couples and families
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Local Directory Relate (North & South West Sussex)
Contacts: Zoe Kane, SASBAH Advisor, Sharon Saville. SASBAH Advisor Tel: 01903 723278 or 01825 873045 Email: email@example.com Web: www.sasbah.org.uk
Chichester Office 6 Theatre Lane Chichester, PO19 1SR Tel: 01243 788935 Crawley Office The Orchard 1-2 Gleneagles Court Brighton Road Crawley, RH10 6AD Tel: 01293 657055
Social activities, buddy scheme and advice to people with Spina Bifida and Hydrocephalus Scope West Sussex Sunray Building Little Breach Chichester, PO19 5UA
Horsham Office Cemetery Lodge Denne Road Horsham, RH12 1JF Tel: 01403 266454
Contact: John Watson, Centre Manager
Counselling and training for parents, couples and families SASBAH (Sussex Association for Spina Bifida and Hydrocephalus) Units 5 & 6 Swan Wood Park Gun Hill Horam, TN21 0JS SASBAH Advisors Dove Lodge 49 Beach Road Littlehampton, BN17 5JG
Tel: 01243 775330 Email: firstname.lastname@example.org Web: www.scope-west-sussex.org.uk Day centre and social activities for people with Cerebral Palsy Seagull Specials Brighton & Hove Albion FC Tower Point 44 North Road Brighton, BN1 1YL Contact: Teresa Sanders, Head Coach
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Tel: 07919051848 Email: Teresa.email@example.com Web: www.seagulls-specials.org.uk
Contact: Mel Upton, Director Tel: 01273 832855 Email: firstname.lastname@example.org Web: www.shinetheatregroup.co.uk
Football club connected to Brighton & Hove Albion for disabled children and young people
Inclusive theatre group for children and young people aged 5-19
Sensory Services Team
Shooting Star CHASE
County Hall North Chartway Horsham, RH12 1XA
Old Portsmouth Road Guildford, GU3 1LP
Tel: 01243 642555 Textphone: 01403 275515 SMS: 07736 093462 Email: as.sensory.services.duty@ westsussex.gov.uk
Tel: 01483 230960 Email: email@example.com Web: www.chase.org.uk
Sensory Support Team
Childrenâ€™s hospice for children with life limiting illnesses from London, Surrey and West Sussex
Rydon Community College Rock Road Storrington, RH20 3AA
Signposts (The Old Post Office Resource Centre)
Tel: 0845 0751007 Email: firstname.lastname@example.org
30-32 Station Road Burgess Hill, RH15 9DS
Provision of services to children and adults with hearing or sight impairments
Tel: 01444 616232 Email: email@example.com Web: www.signpostsmidsussex.org.uk
Shine Theatre Group
Information, advice and training to people with learning difficulties and their parents/carers
Lodge Cottage South Avenue Hurstpierpoint, BN6 9QB
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Local Directory Single Parents Information Network (SPIN)
Tel: 01903 207024 Web: www.stmatthewschurch.co.uk
Basement Flat 151 Ditchling Rise Brighton, BN1 4QQ
Drop-in support group for parents and carers of children with special needs aged 0-16 in Worthing
Tel: 01273 675773 Email: firstname.lastname@example.org Web: www.spinbrighton.shutterfly.com
Southern Area Disability Sports Groups
Information, online networking and volunteering opportunities for single parents in Brighton and Sussex
c/o Angmering School Station Road Angmering, BN16 4HH
Smile Support & Care
Contact: Alison Groves
1st Floor Suite The Bradbury Centre 4-5 St. Martinâ€™s Lane Littlehampton, BN17 6BS
Tel: 01903 778328 Email: email@example.com Sporting activities for children and young people with disabilities
Contact: Sue Stepney Tel: 01903 787614 Email: firstname.lastname@example.org Web: www.smilesupport.org.uk Provides 1-2-1 care to families with disabled children and young adults SNAPS c/o St. Matthewâ€™s Church Parish Office Tarring Road Worthing, BN11 4HB
Special Task Force Penfold Hall Church Street Steyning, BN44 3YB Tel: 01903 765340 Email: email@example.com Youth club for young people with and without disabilities aged 18+
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Tel: 07519280950 Email: firstname.lastname@example.org Web: www.sussexadhd.org.uk
52 Hurst Road Horsham, RH12 2EP Contact: Nigel Scott-Dickeson, Project Manager
Support group for parents of children and young people with ADHD
Tel: 01403 218888 Email: email@example.com Web: www.springboardproject.com
Sussex Downs ADHD Information Group
Inclusive play, recreation centre and other support for children and young people with special needs and their families
Tel: 01273 709663 (day) Tel: 01273 411583 (eve) Email: firstname.lastname@example.org Web: http://homepage.ntlworld. com/aj.curry216/index.html
Spurgeons 74 Wellingborough Road Rushden Northants, NN10 9TY Contact: Leonie Warnick Tel: 01903 719515 Email: email@example.com Web: www.spurgeons.org Provides support to disadvantaged and vulnerable children and young people Sussex ADHD Support Group Lavinia House Dukes Square Denne Road Horsham, RH12 1GZ
Brighton & Hove based group providing information and support to people with ADHD plus their families and carers Sussex Deaf Association Brighton Deaf Centre Carlton Hill Brighton, BN2 0GW Contact: Teena Whyte, Advocacy Support Worker, West Sussex Tel: 01273 671899 Email: firstname.lastname@example.org Web: www.sussexdeaf.co.uk Information, advice, training and community support to people who having hearing impairments
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Local Directory Sussex Otters Contact: Michael Morris, Chairman Tel: 01243 781259 Email: email@example.com Web: www.sussexotters.org.uk Volunteer supported swimming club for people with disabilities Sussex Snowdrop Trust
Disabled sports club for people of all ages and abilities Swimbabies Contact: Lucy Keeffe, Founder, Owner and Instructor Tel: 01903 717652 Email: firstname.lastname@example.org Web: www.swimbabies.com
3 Kingley Centre Downs Road West Stoke Chichester, PO18 9HJ
Swim classes for babies and their parents/carers
Contact: Jo Rule, Office Manager
Tel: 01403 266215 Email: email@example.com
That Monday Thing
Tel: 01243 572433 Email: firstname.lastname@example.org Web: www.sussexsnowdroptrust.com Provides equipment, nursing support and volunteers to families of children with life threatening illnesses Sussex Wasps 131 Bevendean Crescent Brighton, BN2 4RE Contact: Phil Reay, Secretary Tel: 01273 701235 Email: email@example.com
Support group for parents and families of young children with special needs that meets weekly during the school term in Horsham Time Aside Contact: Sueloo Brown Tel: 07792903236 Email: firstname.lastname@example.org Web: www.timeaside.com Sensory arts for people of all ages
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Rustington Youth Centre 34 Woodlands Avenue Rustington, BN16 3HB
26 Goldsmith Road Worthing, BN14 8ER Tel: 0798417977 Email: email@example.com Web: www.wellspringwestsussex.org.uk
Contact: John Savage Tel: 01903 502850 Email: firstname.lastname@example.org
Provides information on services and resources to children and young people with disabilities and their families
Social Club for young people with learning difficulties in Littlehampton
We Play Too
Understanding Differences Tel: 07832245014 Email & Web: email@example.com www.understandingdifferences.org.uk
Contact: Lyn Aaron-Ferrigno Tel: 07712202100 Email: firstname.lastname@example.org Web: www.weplaytoo.org.uk
Information and peer support to families undergoing diagnosis, loss or bereavement of a child or adult
Inclusive playground at Brooklands Leisure Park in Worthing
Voice for Disability
West Sussex Circles Project
7 St. Johnâ€™s Parade Alinora Crescent Goring by Sea Worthing, BN12 4HJ
Contact: Alexandra Collier, Project Manager
Tel: 01903 244457 Email: email@example.com Web: www.wsad.org.uk Information, advice and equipment sales for disabled people and their families
Tel: 01444 236593 Email & Web: firstname.lastname@example.org www.circlesnetwork.org.uk/westsussex Advocacy, inclusion and support for people who are isolated or at risk of being isolated
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Local Directory West Sussex Dyslexia Association Contact: Susan Kielty, Chair Tel: 01903 532952 (Helpline 2-4pm) Email: email@example.com Web: http://homepage.ntlworld.com/ susan.kielty/wsdacall.htm Telephone and email helpline, newsletter, Dyslexic assessment for 7-12 year olds and help with statementing West Sussex Parents Forum PO Box 3328 Littlehampton, BN16 9EX Contact: Kelly Willard, Chair Tel: 07528418149 Email & Web: firstname.lastname@example.org www.westsussexparentsforum.co.uk Information, training and campaigning on behalf of parents of children with special needs West Sussex Wheelchair Service
Worthing: 01903 846500 Horsham: 01403 227000 (Ext 7160) Assesses for, provides and maintains manual and powered wheelchairs for children and adults with long term mobility problems Whoopsadaisy HOP House 41 Church Road Hove, BN3 2BE Contact: Sarah Thomas, Operations Manager Tel: 07588 555761 Email: email@example.com Web: www.whoopsadaisy.org Training for parents and children with cerebral palsy in the principles of Conductive Education Windmills Opportunity Playgroup Sheddingdean Community Centre Maple Drive Burgess Hill, RH15 8UA Contact: Sue Wigg, Manager
West Sussex Wheelchair Service Bognor Regis War Memorial Hospital Shripney Road Bognor Regis, PO22 9PP
Tel: 01444 233724 Email: firstname.lastname@example.org Web: www.windmillsplaygroup.co.uk
Chichester: 01243 531268
Inclusive playgroup for children with and without additional needs - 156 -
Worthing kiDS & Dapper Snapper Contact: Becky Wakeham or Michelle Hodges Tel: 01903 530149 or 01903 756287 Email: Becky.email@example.com Web: www.worthingkids.webs.com Support group for children with Down Syndrome and their parents and families Worthing & District Scope The Fitzalan Howard Centre Pavilion Road Worthing, BN14 7EF Contact: Pauline Fox, General Manager Tel: 01903 522399 Web: www.worthingscope.org.uk Day centre, social activities and other services for young people and adults with Cerebral Palsy Worthing Mencap
Day centre, sports club and other activities for people with learning disabilities Worthing Portage Service School House Littlehampton Road Worthing, BN13 1RB Contact: Tandy Roberts, Manager Tel: 01903 242558 Pre-school educational service for children with special needs You Can Do It! Contact: Caroline Johnston, Chairperson Tel: 01403 273301 Email: firstname.lastname@example.org Parent led inclusive arts and sports for children with additional needs, their siblings and friends
Buddys 121 South Farm Road Worthing Tel: 01903 202030 Email: email@example.com Web: www.worthingmencap.ukf.net
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National Directory AbilityNet Tel: 020 7 490 8387 Email: firstname.lastname@example.org Web: www.abilitynet.org.uk Helps children and adults with disabilities use computers and access the internet
Tel: 0800 0744 519 (Helpline) Web: www.actionforsickchildren.org Provides health care to sick children and information and advice (including a helpline) to parents, families and professionals
Provides information, advice and training to people affected by Attention Deficit Disorder including sufferers, parents and professionals AFASIC (Action for All Speech Impaired Children) Tel: 0845 355 5577 (Parents Helpline) Email: email@example.com Web: www.afasicengland.org.uk
Action for Victims of Medical Accidents (AVMA) Tel: 0845 123 23 52 (Helpline) Web: www.avma.org.uk Promotes better patient safety and justice (including financial compensation) for victims of medical accidents
Tel: 0117 916 6430 Email: firstname.lastname@example.org Web: www.act.org.uk
ADDISS (National Attention Deficit Disorder Information and Support Service) Tel: 020 8 9522800 Email: email@example.com Web: www.addiss.co.uk
Action for Sick Children
Campaigns for improved palliative care of children with life limiting or life threatening illnesses, also supports parents and professionals
Information, advice and training for parents of children with speech and language impairments Aidis Trust Tel: 020 7 426 2130 Email: firstname.lastname@example.org Web: www.aidis.org Information, advice, training and technical support to enable disabled people to better use computers and assistive technology
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Ambitious about Autism
Tel: 020 8 815 5444 Email: email@example.com Web: www.treehouse.org.uk
Tel: 0808 800 4050 Email: firstname.lastname@example.org Web: www.arthritiscare.org.uk
Education, training and campaigning for improved opportunities for people with Autism
Information, training, networking and campaigning on behalf of people with Arthritis
ARC (Association for Real Change)
APDA (Asian Peopleâ€™s Disability Alliance)
Tel: 01246 555043 Email: email@example.com Web: www.arcuk.org.uk
Tel: 020 8 903 2231 Email: firstname.lastname@example.org Web: www.apda.org.uk
Information, advice, training and consultancy on person centred services for people with learning disabilities
Information, advice, day care, sports and arts for disabled Asian people
ARCOS (Association for Rehabilitation of Communication and Oral Skills)
Tel: 0800 0439395 Web: www.askdes.org.uk
Second hand disability equipment service
Tel: 0845 122 8697 (Helpline) Email: email@example.com Web: www.arcos.org.uk
ASBAH (Association for Spina Bifida and Hydrocephalus)
Provides information, advice, training and therapy to children and adults with communication or eating difficulties
Tel: 0845 450 7755 (Helpline) Email: firstname.lastname@example.org Web: www.asbah.org Information, advice and support to people Spina Bifida and Hydrocephalus
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National Directory Asthma UK
bibic (British Institute for Brain Injured Children)
Tel: 0800 121 6244 Email: email@example.com Web: www.asthma.org.uk
Tel: 01278 684060 Web: www.bibic.org.uk
Information, advice, research and campaigning on behalf of Asthma sufferers
Practical assessment, therapy and support for families of children with brain injuries and other conditions including Autism, Cerebral Palsy, Down Syndrome, Development Delay, etc.
AYME (Association of Young People with ME) Tel: 08451 23 23 89 Email: firstname.lastname@example.org Web: www.ayme.org.uk
Birth Trauma Association enquiries@birthtraumaassociation. org.uk www.birthtraumaassociation.org.uk
Online information and resources Bobath Centre
Works with mothers who have experienced birth trauma of post natal post traumatic stress disorder
Tel: 0208 444 3355 Email: email@example.com Web: www.bobath.org.uk Specialist therapy for children and adults with Cerebral Palsy designed to enhance personal independence BACP (British Association of Counselling & Psychotherapy)
Brain and Spine Foundation Tel: 0808 808 1000 (Helpline) Email: firstname.lastname@example.org Web: www.brainandspine.org.uk Information, advice and training to people affected by brain and spine conditions and medical and educational professionals
Tel: 01455 883300 Web: www.bacp.co.uk Membership organisation governing the professional standards of counsellors and psychotherapists
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British Deaf Association (England)
Tel: 01772 259725 Textphone: 05603 115295 Email: email@example.com Web: www.bda.org.uk
Information, advice and grantfunding for people with Brittle Bone Disease Brook Advisory Centre
Deaf-led membership organisation that campaigns for greater equality for deaf people
Tel: 0808 802 1234 (Free Helpline) Email: firstname.lastname@example.org Web: www.brook.org.uk
British Dyslexia Association Tel: 0845 251 9002 (Helpline) Email: email@example.com Web: www.bdadyslexia.org.uk Information, advice, training and campaigning on behalf of Dyslexic people in the UK.
Information, advice and support on sexual health for under 25â€™s. Care Quality Commission CQC National Correspondence Citygate Gallowgate Newcastle, NE1 4PA
British Kidney Patient Associations Tel: 01420 541424 Email: firstname.lastname@example.org Web: www.britishkidney-pa.co.uk
Tel: 03000 616161 Web: www.cqc.org.uk Independent agency regulating health and social care in England.
Information, advice and grants for people in the UK with kidney disease.
Brittle Bone Society
Tel: 0808 808 7777 (Advice Line) Email: email@example.com Web: www.carersuk.org
Tel: 08000 282 459 (Freephone Helpline) Email: firstname.lastname@example.org
Information, advice and campaigning on behalf of all unpaid carers
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National Directory Email: email@example.com Web: www.changingfaces.org.uk
CBIT (Child Brain Injury Trust) Tel: 0845 601 4939 Email: firstname.lastname@example.org Web: www.cbituk.org Family support, information, advice and training to families of children with acquired brain injuries
Care and support to individuals and their families living with disfigurement, plus training for professionals and campaigning on behalf of people with disfigurements. Child Bereavement Charity
Cerebra Tel: 0800 328 1159 (Parent Helpline) Email: email@example.com Web: www.cerebra.org.uk
Tel: 01494 568900 (Support & Information) Email: firstname.lastname@example.org Web: www.childbereavement.org.uk
Information and advice, a postal lending library, speech therapy, grants and parent to parent support for families of children with brain related conditions.
Child Death Helpline
Challenging Behaviour Foundation
Freephone service staffed by volunteers for anyone affected by the death of a child
Tel: 0845 602 7885 (Family Helpline) Email: email@example.com Web: www.challengingbehaviour.org.uk Information, advice and training to parents and professionals working with individuals with severe learning disabilities Changing Faces
Tel: 0800 282 986 (Helpline) Email: firstname.lastname@example.org Web: www.childdeathhelpline.org
Childrenâ€™s Heart Association Tel: 01706 221988 Email: email@example.com Web: www.heartchild.info Support group run by and for the family and friends of children with heart disorders
Tel: 0845 4500 275
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Childrenâ€™s Heart Federation
Tel: 0808 808 5000 (Freephone Helpline) Email: firstname.lastname@example.org Web: www.chfed.org.uk
Information to new parents, soft bottles and teats for specialist feeding, activities for children and young people, advice on treatment for adults and volunteering opportunities
Information, advice and grants to the families of children with heart conditions
Climb Tel: 0800 652 3181 (Freephone) Email: email@example.com Web: www.climb.org.uk
Childrenâ€™s Legal Centre Tel: 0808 802 0008 (Freephone Advice Line) Email: firstname.lastname@example.org Web: www.childrenslegalcentre.com Provide legal advice, information and representation for children and young people Child Support Agency Tel: 08457 133 133 (Helpline) Web: www.csa.gov.uk Government agency that seeks to ensure parents who live apart from their children contribute financially to their upkeep CLAPA (Cleft Lip & Palate Association) Tel: 020 7 833 4883 Email: email@example.com
Information for children, young people and families affected by Inherited Metabolic Diseases Compassionate Friends Tel: 0845 123 2304 (UK Helpline) Email: firstname.lastname@example.org Web: www.tcf.org.uk A bereaved parent led group that offers support and care to other parents, grandparents or siblings who have suffered the death of a child Computers for the Disabled Tel: 01268284834 Email: email@example.com Web: www.cftd.co.uk Information, advice and the provision of recycled computers to disabled people and organisations
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National Directory Community Legal Advice
Cystic Fibrosis Trust
Tel: 0845 345 4345 (Helpline) Web: www.communitylegaladvice.org.uk
Tel: 0300 373 1000 Email: firstname.lastname@example.org Web: www.cftrust.org.uk
Free confidential, legal advice paid for by Legal Aid Contact a Family (CAF) Tel: 0808 808 3555 (Free Helpline) Textphone: 0808 808 3556 Email: email@example.com Web: www.cafamily.org.uk
Information and advice, care and support, grants, research and campaigning on behalf of people with Cystic Fibrosis Diabetes UK
Information, advice and campaigning on behalf of parents and families of children with special needs Council for Disabled Children Tel: 020 7 843 1900 Email: firstname.lastname@example.org Web: www.ncb.org.uk/cdc/home.aspx
Tel: 0845 120 2960 Email: email@example.com Web: www.diabetes.org.uk Information and advice, training, advocacy, support groups and campaigning on behalf of people with Diabetes Disability Alliance
Umbrella organisation that campaigns on behalf of the disabled childrenâ€™s sector in England
Tel: 020 7247 8776 Email: firstname.lastname@example.org Web: www.disabilityalliance.org
Information, advice, training and campaigning to relieve poverty and improve the living standards of disabled people
Tel: 0845 1228 669 (Helpline) Web: www.cry-sis.org.uk Information and advice to families with excessively crying, sleepless and demanding babies
Disability Equipment Register Tel: 01454 318818 Email: email@example.com - 164 -
Downâ€™s Heart Group
Service enabling disabled people to buy and sell second hand equipment including wheelchairs and scooters
Tel: 0845 166 8061 Email: firstname.lastname@example.org Web: www.dhg.org.uk
Disability Law Service
Information and support to parents and professionals working with people with Down Syndrome
Tel: 020 7 791 9800 (Helpline) Email: email@example.com Web: www.dls.org.uk
Downâ€™s Syndrome Association
Disabled run organisation providing legal advice and representation in areas of public and social welfare law
Tel: 0845 230 0372 (Helpline) Email: firstname.lastname@example.org Web: www.downs-syndrome.org.uk
Disabled Living Foundation
Information, advice, training and campaigning on behalf of people with Down Syndrome
Tel: 0845 130 9177 (Helpline) Email: email@example.com Web: www.dlf.org.uk
Provides information, advice and training on daily living aids
Tel: 01462 454986 (helpline) firstname.lastname@example.org www.dyspraxiafoundation.org.uk
Disabled Parents Network Tel: 0300 3300 639 information@disabledparentsnetwork. org.uk www.disabledparentsnetwork.org.uk Information, advocacy, peer support and local groups for disabled parents or disabled people who hope to become parents
Information, advice and training for people with Dyspraxia, their parents, families and professionals Education and Resources for Improving Childhood Continence (ERIC) Tel: 0845 370 8008 (Helpline) Email: email@example.com
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National Directory Web: www.eric.org.uk Information, advice and support to parents of children with continence issues and to health professionals Epilepsy Action
Information, advice and support to parents and families
Information, advice, support and campaigning on behalf of people with Epilepsy
Family Rights Group Tel: 0808 801 0366 (Free Helpline) Email: firstname.lastname@example.org Web: www.frg.org.uk
Equality & Human Rights Commission (EHRC) Tel: 0845 604 6610 Email: email@example.com Web: www.equalityhumanrights.com
Every Disabled Child Matters (EDCM) Tel: 020 7843 6082 Email: firstname.lastname@example.org Web: www.edcm.org.uk
Family Lives Tel: 0808 800 2222 (24 Hour Helpline) Textphone: 0800 783 6783 Web: www.familylives.org.uk
Tel: 0808 800 5050 (Freephone Helpline) Email: email@example.com Web: www.epilepsy.org.uk
National agency which promotes and monitors human rights and enforces, protects and promotes equality
A coalition of organisations campaigning to get rights and justice for disabled children
Advises, advocates and campaigns for families involved with or require social care services Foundation for People with Learning Disabilities Tel: 020 7 803 1100 Email: firstname.lastname@example.org Web: www.learningdisabilities.org.uk Wide range of service providing information, advice, training, day care, support and campaigning on behalf of people with learning disabilities
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Fragile X Society
Tel: 01371 875100 Email: email@example.com Web: www.fragilex.org.uk
Tel: 0808 800 2244 (Free Helpline) Email: firstname.lastname@example.org Web: www.headway.org.uk
Information, advice, resources and peer support to families of children with Fragile X Syndrome
Information, advice, local groups and campaigning on behalf of people affected by brain injuries
Tel: 020 7 428 5400 (Free Helpline) Web: www.gingerbread.org.uk
Tel: 033 00 22 44 66 Email: email@example.com Web: www.heartline.org.uk
Information, advice, training and local groups for single parents
Information, advice and peer support for parents of children with a heart disorder
Go Kids Go! Tel: 0844 544 1050 firstname.lastname@example.org Web: www.wheelchairchildren.org.uk Provides wheelchair skills training to children and young people across the UK Girlguiding UK Tel: 0800 169 5901 Email: email@example.com Web: www.girlguiding.org.uk National umbrella organisation for girl guides throughout the UK
HemiHelp Tel: 0845 123 2372 (Helpline) Email: firstname.lastname@example.org Web: www.hemihelp.org.uk Information, advice, training, local groups and home visiting service for families of children with hemiplegia Henry Spink Foundation c/o Montgomery Swann, Scotts Sufferance Wharf , 1 Mill Street, London, SE1 2DE
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National Directory Email: henryspinkfoundation@ finsbury.com Web: www.henryspink.org
Information and resources on a wide range of conventional and complimentary therapies available on a wide range of disabilities and conditions
Tel: 01942 713565 Email: Jackie@jabs.org.uk Web: www.jabs.org.uk Support group for parents of children who have had a health problem following vaccination Local Government Ombudsman
Tel: 0300 061 0614 (Advice Line) Email: email@example.com Web: www.lgo.org.uk
Tel: 0845 225 4071 Email: firstname.lastname@example.org Web: www.ican.org.uk Information and advice, training and accreditation for the childrenâ€™s workforce, specialist schools, campaigning and multi-disciplinary assessments of children with communication difficulties IT Can Help
Free service that investigates complaints made against local councils and some other authorities including education admission appeals panels and adult social care providers The Makaton Charity Tel: 01276 606760 Email: email@example.com Web: www.makaton.org
Tel: 0800 269545 Email: firstname.lastname@example.org (local contact) Web: www.itcanhelp.org.uk
Information, advice, training and resources to enable people to use the Makaton system of communication
Provide a network of volunteers who provide free assistance with computers to disabled people including diagnosing and fixing most computer related problems
Mencap Tel: 0808 808 1111 (Helpline) Email: email@example.com Web: www.mencap.org.uk
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Wide ranging services for people with learning disabilities and their families and carers including information and advice, training, family support services, housing, jobs and training, etc.
Muscular Dystrophy Campaign
Information, advice, research, grants and campaigning on behalf of people with Muscular Dystrophy
Tel: 0800 652 6352 (Freephone Helpline) Email: firstname.lastname@example.org Web: www.muscular-dystrophy.org
Tel: 01372 725203 Email: email@example.com Web: www.meru.org.uk
National Autistic Society
Design and custom building specialist equipment for children and young people with disabilities
Tel: 0845 070 4004 (Free Helpline) Email: firstname.lastname@example.org Web: www.autism.org.uk
Wide range of services for people with Autism and their families including information, advice, training, local groups, etc.
Tel: 0845 766 0163 (Helpline) Email: email@example.com Web: www.mind.org.uk Information, advice, training, local groups and campaigning on behalf of people with mental health needs Motability Tel: 0845 456 4566 Web: www.motability.co.uk National scheme enabling people to exchange the Higher Rate Mobility Component of Disability Living Allowance for a car, powered wheelchair or scooter
NBCS (National Blind Childrenâ€™s Society) Tel: 01278 764 764 Email: firstname.lastname@example.org Web: www.nbcs.org.uk Information and advice, education and advocacy, specialist equipment and recreational activities for children with visual impairments
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National Directory National Centre for Independent Living
NDCS (National Deaf Childrenâ€™s Society)
Tel: 0845 026 4748 (Advice Line) Email: email@example.com Web: www.ncil.org.uk
Tel: 0808 800 8880 (Freephone Helpline) Email: firstname.lastname@example.org Web: www.ndcs.org.uk
Disabled led organisation that provides information, advice and training to enable disabled people to live independently NCYPE (National Centre for Young People with Epilepsy)
Information, advice, resources and campaigning on behalf of children with hearing impairments National Eczema Society Tel: 0800 089 1122 (Helpline) Email: email@example.com Web: www.eczema.org
Tel: 01342 832243 Email: firstname.lastname@example.org Web: www.ncype.org.uk Information, advice, training and education for children and young people with Epilepsy and other neurological conditions including Autism and a wide range of learning difficulties
Information and advice, resources for schools and healthcare professionals, support groups and research National Parent Partnership
NCB (National Childrenâ€™s Bureau)
Tel: 020 7 843 6058 Email: email@example.com Web: www.parentpartnership.org.uk
Tel: 020 7 843 6000 Email: firstname.lastname@example.org Web: www.ncb.org.uk
Umbrella organisation representing and supporting local parent partnership services
Information, advice, training and campaigning on behalf of children, young people and families
National Portage Association Tel: 0121 244 1807 Email: email@example.com
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Provides information, advice and support to parents and professionals involved in Portage
Tel: 020 7 820 6655 Email: firstname.lastname@example.org Web: www.peoplefirstltd.com
National Talking Newspapers
Disabled led organisation providing local support groups and campaigning for the rights of people with learning disabilities
Tel: 01435 866102 Email: email@example.com Web: www.tnauk.org.uk Provision of audio based newspapers in a variety of formats for blind and partially sighted people Parliamentary and Health Service Ombudsman
Public service providing independent investigations into complaints into government departments and the NHS in the UK
Tel: 0845 608 4455 (Helpline) firstname.lastname@example.org Web: www.patients-association.org.uk Information, advice and advocacy on behalf of patients
Tel: 020 8 667 9443 Email: email@example.com Web: www.phab.org.uk Recreational activities, specially equipped short breaks and holidays and clubs for children and adults of all abilities
Tel: 0345 015 4033 (Complaints Helpline) firstname.lastname@example.org Web: www.ombudsman.org.uk
PINNT PO Box 3126 Christchurch, BH23 2XS Email: email@example.com Web: www.pinnt.com Information, advice and support groups for patients on Intravenous and Nasogastric Nutrition Therapy including feeding issues for children and babies
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National Directory Princess Royal Trust for Carers
Membership based organisation for children with upper limb deficiency providing information and support to its members
Tel: 0844 800 4361 Email: firstname.lastname@example.org Web: www.carers.org
Remap Information, advice, support and a network of local services for carers
Tel: 0845 1300 456 Web: www.remap.org.uk
Tailor made special equipment for disabled people designed and built by volunteer experts
Tel: 020 7 250 3222 Email: email@example.com Web: www.radar.org.uk
Umbrella group with a membership of over 800 organisations and individuals campaigning for the rights of disabled people Rainbow Trust Tel: 01372 363438 Email: firstname.lastname@example.org Web: www.rainbowtrust.org.uk Family Support Workers to families of children with a life threatening or terminal illness Reach Tel: 0845 1306 225 Email: email@example.com Web: www.reach.org.uk
Tel: 01582 798910 Email: firstname.lastname@example.org Web: www.rettuk.org Information and advice, clinics for diagnosis of children and adults, local support groups and social activities for families affected by Rett Syndrome Riding for the Disabled Tel: 0845 658 1083 Web: www.riding-for-disabled.org.uk Umbrella organisation representing local riding clubs for disabled children and adults
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RNIB (Royal National Institute of Blind People)
Sane Tel: 0845 767 8000 (Helpline) Email: email@example.com Web: www.sane.org.uk
Tel: 0303 123 9999 Email: firstname.lastname@example.org Web: www.rnib.org.uk Wide range of services including information & advice, training and resources, research, regional support and campaigning on behalf of people with sight impairments RNID (Royal National Institute for Deaf People)
Information, advice, emotional support and campaigning on behalf of people with mental health needs Scope Tel: 0808 800 3333 Email: email@example.com Web: www.scope.org.uk Wide range of support including information, advice, training, campaigning, local groups and services for people with Cerebral Palsy and their families and carers
Tel: 0808 808 0123 (Freephone) Textphone: 0808 808 9000 Email: firstname.lastname@example.org Web: www.rnid.org.uk Information and advice, hearing checks, research, care and communication services, employment advice , equipment and campaigning on half of people with hearing impairments
Umbrella organisation representing the Scouting movement in the UK
Tel: 020 7 436 5881 Email: email@example.com Web: www.uk-sands.org Information, advice, research and support to anyone affected by the death of a baby
Tel: 0845 300 1818 Email: firstname.lastname@example.org Web: www.scouts.org.uk
Sense (National Deafblind & Rubella Association) Tel: 0845 127 0060 Email: email@example.com Web: www.sense.org.uk - 173 -
National Directory Wide range of projects and services for deafblind people and their families including information and advice and local branches
Steps Charity Tel: 01925 750271 (Helpline) Email: firstname.lastname@example.org Web: www.steps-charity.org.uk
Sibs Information, grants and support to everyone affected by lower limb conditions like a club foot or hip condition
Tel: 01535 645453 Web: www.sibs.org.uk Information, advice and local groups for child and adult siblings of disabled people Sickle Cell Society
Syndromes Without a Name (SWAN) Tel: 01922 701234 Email: email@example.com Web: www.undiagnosed.org.uk
Tel: 020 8 961 7795 Email: firstname.lastname@example.org Web: www.sicklecellsociety.org Information, advice, testing and volunteer support to people and families affected by Sickle Cell Disorders Signalong Group
Information, support and online forum for families of children with undiagnosed disabilities Tourettes Action Tel: 0845 458 1252 (Helpline) Email: email@example.com Web: www.tourettes-action.org.uk
Tel: 0845 450 8422 Email: firstname.lastname@example.org Web: www.signalong.org.uk Information, advice, training and research into the development of the Signalong system of communication
Wide range of services including information and advice, training, resources, support with diagnosis, grants and social activities for people with Tourette Syndrome
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Tourism for All
Tel: 0845 124 9971 Email: email@example.com Web: www.tourismforall.org.uk
Tel: 0800 013 0313 (Parent Helpline) Email: firstname.lastname@example.org Web: www.workingfamilies.org.uk
Information and advice that enables disabled people to participate in travel and leisure
Information, advice and campaigning for better work-life balance for UK families
Unique (Rare Chromosome Disorder Support Group)
Tel: 01883 330766 Email: email@example.com Web: www.rarechromo.org Information and support to families and individuals affected by a rare chromosome disorder including the professionals who work with them
Tel: 0808 802 5544 (Parents Helpline) Web: www.youngminds.org.uk Information, advice, resources and campaigns to improve the mental health and well being of children and young people
Vision Aid Tel: 01204 64265 Email: firstname.lastname@example.org Web: www.visionaid.org.uk Information, advice and friendship to families of children with sight impairments
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Education Directory Chailey Heritage School
Court Meadow School
Haywards Heath Road Chailey Nr Lewes, BN8 4EF
Hanlye Lane Cuckfield Haywards Heath, RH17 5HN
Contact: Sylvia Lamb, Principal
Contact: Miss M. R. Smith, Head Teacher
Tel: 01825 724444 Email: email@example.com Web: www.chs.org.uk A special school (and registered childrenâ€™s home) for children aged 3-19 with complex physical disabilities including visual and hearing impairments and associated learning difficulties
Tel: 01444 454535 Email & Web: firstname.lastname@example.org www.courtmeadow.w-sussex.sch.uk Community special school for children aged 2-19 years with a wide range of learning disabilities Fordwater School
Cornfield School Summersdale Road Chichester, PO19 6PP
Cornfield Close Wick Littlehampton, BN17 6HY
Contact: Sue Meekings, Head Teacher
Contact: Mrs M. Davis, Head Teacher Tel: 01903 731277 Email: email@example.com Web:www.cornfield.w-sussex.sch.uk
Tel: 01243 782475 Email: firstname.lastname@example.org Web: www.fordwater.w-sussex.sch.uk Co-educational school for 2-19 year olds with severe learning difficulties.
School for secondary aged boys and girls who have social, emotional and/ or behavioural difficulties.
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Herons Dale School
Contact: Ric Turney, Executive Head, Allan Bowell, Operational Head
Hawkins Crescent Shoreham by Sea, BN43 6TN
Tel: 01293 520351 Email: office@manorgreen-college. w-sussex.sch.uk Web: www.manorgreen-college. w-sussex.sch.uk
Contact: Trish Stepney, Head Teacher Tel: 01273 596904 Email: email@example.com Web: www.heronsdale.w-sussex.sch.uk
Secondary school for students between the ages of 11-19 who experience a wide range of learning difficulties.
A generic primary school for children aged 4-11 with a wide spectrum of special educational needs.
Manor Green Primary School
Littlegreen School Compton Chichester, PO18 9NW
Lady Margaret Road Ifield Crawley, RH11 0DU
Contact: Wendy Peek
Contact: David Reid, Head Teacher
Tel: 02392 631259 Email: firstname.lastname@example.org Web: www.littlegreen.w-sussex.sch.uk
Tel: 01293 526873 Email: office@manorgreenprimary. w-sussex.sch.uk Web: www.manorgreenprimary. w-sussex.sch.uk
Special school for boys at key stage 2 and 3 who have social, emotional and behavioural difficulties. Manor Green College
Caters for pupils with ages ranging from 2-11 years. All pupils have learning difficulties and additional needs.
Lady Margaret Road Ifield Crawley, RH11 0DX - 177 -
Education Directory Newick House School
Birchwood Grove Road Burgess Hill, RH15 0DP
Palatine Road Goring by Sea Worthing, BN12 6JP
Contact: Gill Perry, Head Teacher
Contact: Nick Dry, Head Teacher
Tel: 01444 233550 Email: email@example.com Web: www.newickhouse.co.uk A special school for pupils with a range of learning difficulties. The school caters for learners with complex special needs, including Autism, and is designated as a school for pupils with Moderate Learning Difficulties.
Tel: 01903 242835 Email: firstname.lastname@example.org Web: www.palatineschool.org Generic primary school for children with multiple learning difficulties, severe learning difficulties, moderate learning difficulties and pupils on the autistic spectrum.
Oak Grove College
Queen Elizabeth II Silver Jubilee School
The Boulevard Worthing, BN13 1JX
Comptons Lane Horsham, RH13 5NW
Contact: Catriona Goldsmith, Deputy Head
Contact: Lesley Dyer, Head Teacher
Tel: 01903 708870 Email: email@example.com Web: www.oakgrovecollege.org.uk A secondary school providing special education for students with learning difficulties from Year 7 to Year 14.
Tel: 01403 266215 Email & Web: firstname.lastname@example.org www.queenelizabeth2.w-sussex.sch.uk School for 2-19 year olds with severe or profound multiple learning difficulties. Some pupils also experience more complex needs, such as severe epilepsy or autism.
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St. Anthonyâ€™s School
Blackthorns Community Primary School (Specialist Support Unit)
Woodlands Lane Chichester, PO19 5PA
3 Blackthorns Close Lindfield, RH16 2UA
Contact: Bob Griffin, Head Teacher Contact: Ruth Schofield, Head Teacher
Tel: 01243 785965 Email & Web:: email@example.com www.st-anthonys.w-sussex.sch.uk
Tel: 01444 454866 Email & Web: firstname.lastname@example.org www.blackthorns.w-sussex.sch.uk
SPECIAL SUPPORT CENTRES
Blackthorns has a Special Support Centre for 8 children with statements for Dyslexia in Key stage 2.
Barnham Primary School (Phyiscal Disability Unit)
Boundstone Nursery School (Speech & Language Unit)
Elm Grove Barnham Bognor Regis, PO22 0HW
Upper Boundstone Lane Lancing, BN15 9QX
Contact: Mrs Julie Hodgson, Head Teacher
Contact: Mrs Linford
Tel: 01243 552197 Email: email@example.com Web: www.barnham.w-sussex.sch.uk Barnham has a Special Support Facility known as The Orchard for up to 10 children from the western and southern areas of West Sussex who have physical disabilities.
Tel: 01903 276850 Email & Web: firstname.lastname@example.org www.boundstone-nur.w-sussex.sch.uk Special Support Centre for children with significant speech and language difficulties
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Education Directory Connaught Junior School (Hearing Impairment Unit)
Durrington Middle School (Social Communication Unit)
Connaught Road Littlehampton, BN17 6ES
Salvington Road Worthing, BN13 2JD
Contact: Mrs Judy Grevett, Head Teacher
Contact: Alison Cornell, Head Teacher
Tel: 01903 715575 Email: email@example.com Web: www.connaught.w-sussex.sch.uk
Tel: 01903 260761 Email & Web: firstname.lastname@example.org. sch.uk www.durringtonmiddle.w-sussex.sch.uk
Special Support Centre for pupils with hearing impairments Desmond Anderson Primary School (Social Communication Unit)
Durrington has a Special Support Centre for 8 children with social and communication difficulties. Field Place First School (Speech & Language Unit)
Anderson Road Crawley, RH10 5EA
Nelson Road Goring by Sea Worthing, BN12 6EN
Contact: Mr T.M. Quinton, Head Teacher Tel: 01293 525596 Email & Web: email@example.com. sch.uk www.desmondanderson.w-sussex. sch.uk Special Support Centre for children with social and/or communication needs
Contact: Linda Bateman, Head Teacher Tel: 01903 700234 Email: firstname.lastname@example.org Web: www.fieldplace.w-sussex.sch.uk Special Support Centre for children with speech and language difficulties
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Hazelwick School (Hearing Impairment Unit)
Lyndhurst First School (Social Communication Unit)
Hazelwick Mill Lane Three Bridges Crawley, RH10 1SX
Lyndhurst Road Worthing, BN11 2DG Contact: Diane South, Head Teacher
Contact: Mr G. Parry, Headmaster Tel: 01903 235390 Email: email@example.com Web: www.lyndhurst.w-sussex.sch.uk
Tel: 01293 403344 Email: firstname.lastname@example.org Web: www.hazelwick.w-sussex.sch.uk Sensory Support Centre for up to 10 children with a sensory impairment
Special Support Centre for up to 8 children with Autism/complex communication disorders
London Meed Community Primary School (Speech & Language Unit)
Maidenbower Junior School (Additional Learning Needs)
Chanctonbury Road Burgess Hill, RH15 9YQ
Harvest Road Maidenbower Crawley, RH10 7RA
Contact: Mr A. J. Brown, Head Teacher
Contact: Mr C. Murphy, Head Teacher
Tel: 01444 232336 Email: email@example.com Web: www.londonmeedprimary.co.uk Special Support Centre for up to 16 children with speech and language difficulties
Tel: 01293 883758 Email: office@maidenbowerjunior. w-sussex.sch.uk Web: www.maidenbowerjunior. w-sussex.sch.uk Special Support Centre for up to 12 children with Dyslexia
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Education Directory Northgate Primary School (Hearing Impairment Unit)
St. Andrew’s CofE Primary School (Speech & Language Unit)
Green Lane Crawley, RH10 8DX
Shooting Field Steyning, BN44 3RQ
Contact: Mrs A. Wood
Contact: Mrs C. Luckin, Head Teacher
Tel: 01293 526737 Email: firstname.lastname@example.org Web: www.northgate.w-sussex.sch.uk Special Support Centre for up to 15 children with hearing impairments
Tel: 01903 813420 Email: email@example.com Web: www.st-andrews-steyning.wsussex.sch.uk Special Support Centre for up to 9 children with speech and language difficulties
Oriel High School (Additional Learning Needs)
St. Margaret’s CofE Primary School (Physical Disability Unit)
Maidenbower Lane Maidenbower Crawley, RH10 7XW Contact: Philip Stack, Head Teacher Tel: 01293 880350 Email: firstname.lastname@example.org Web: www.oriel.w-sussex.sch.uk Special Support Centre for children with Dyslexia
The Mardens Crawley, RH10 0AQ Contact: Helen Fletcher-Reilly, Head Teacher Tel: 01293 521077 Email & Web: email@example.com www.st-margaretsifield.w-sussex.sch.uk Special Support Centre catering for the physical or medical needs of children with disabilities
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Steyning Grammar School (Additional Learning Needs)
Three Bridges Infant School (Speech & Language Unit)
Upper School Shooting Field Steyning, BN44 3RX
Gales Place Three Bridges Crawley, RH10 1QG
Contact: Chris Taylor, Head Teacher
Contact: Catherine Gent, Acting Head Teacher
Tel: 01903 814786 Email: firstname.lastname@example.org Web: www.steyning.w-sussex.sch.uk A special needs team support pupils with learning, behaviour and physical difficulties Thomas Bennett Community College (Social Communication Unit) Ashdown Drive Tilgate Crawley, RH10 5AD Contact: Ms Y. Maskatiya, Head Teacher Tel: 01293 526255 Email: office@thomasbennett. w-sussex.sch.uk Web: www.thomasbennett.org.uk Special Support Centre for children with Autism
Tel: 01293 524076 Email: office@threebridgesinfant. w-sussex.sch.uk Web: www.threebridgesinfant. w-sussex.sch.uk Special Support Centre for children with speech and language difficulties Three Bridges Junior School (Speech & Language Unit) Gales Drive Three Bridges Crawley, RH10 1PD Contact: Mrs C. Tiley, Head Teacher Tel: 01293 526888 Email: email@example.com Web: www.threebridgesjunior. w-sussex.sch.uk Special Support Centre for up to 17 children with speech and language difficulties
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Education Directory Warden Park School (Additional Learning Needs)
Worthing High School (Additional Learning Needs)
Broad Street Cuckfield Haywards Heath, RH17 5DP
South Farm Road Worthing, BN14 7AR Contact: Allson Beer, Head Teacher
Contact: Steve Johnson, Head Teacher
Tel: 01903 237864 Email: firstname.lastname@example.org Web: www.worthinghigh.w-sussex. sch.uk
Tel: 01444 457881 Email: email@example.com Web: www.wardenpark.co.uk Special Support Centre for children with particularly complex learning needs including Dyslexia
Special Support Centre for up to 15 children with additional learning needs.
West Park CofE First & Middle School (Additional Learning Needs and Physical Disability Unit)
EDUCATIONAL ORGANISATIONS ACE (Advisory Centre for Education)
Marlborough Road Goring by Sea Worthing, BN12 4HD Contact: Mr P. Neale, Head Teacher
1c Aberdeen Studios 22 Highbury Grove London, N5 2DQ
Tel: 01903 243099 Email: firstname.lastname@example.org Web: www.westpark.w-sussex.sch.uk
Tel: 0808 800 5793 (Freephone) Email: email@example.com Web: www.ace-ed.org.uk
Two Special Support Centres, one for children with learning difficulties and/or emotional needs and another for children with physical disabilities
Provide information, advice and support to parents across a range of issues including special educational needs
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Alliance for Inclusive Education (ALLFIE)
Contact: Steve Lane, Executive Manager
Tel: 0207 737 6030 Email: firstname.lastname@example.org Web: www.allfie.org.uk
Tel: 01403 782294 Web: www.dvltrust.org.uk
National network of disabled people, parents and teachers campaigning for inclusive education Centre for Studies on Inclusive Education (CIS) Tel: 0117 328 4005 Email: email@example.com Web: www.csie.org.uk Lobbying, campaigning, research and training in support of inclusive education
Runs the school for parents which teaches children and parents the principals of conductive education Downâ€™s Syndrome Education International The Sarah Duffen Centre Belmont Street Southsea, PO5 1NA Tel: 023 9 285 5330 Email: firstname.lastname@example.org Web: www.downsed.org
Information, advice and research to improve education for young people with Down Syndrome
Tel: 020 8 789 9575 Email: email@example.com Web: www.clearvisionproject.org
Education Office N & S (Statutory Assessments requests)
Postal lending library of mainstream childrenâ€™s books with added braille Dame Vera Lyn Trust (School for Parents) Ingfield Manor Five Oaks, RH14 9AX
Tel: 01403 229607 (North of the County) Tel: 01903 839333 (South of the County) Co-ordinates and compiles statements of special educational need and ongoing support for pupils with statements - 185 -
Education Directory Educational Psychology Service
Family Link Worker Service (FLWS)
Mr Chris Lewis Lead Educational Psychologist Area Education Office Centenary House Durrington Lane Worthing, BN13 2QB
Tel: 0845 075 1007
Email: firstname.lastname@example.org Works with children, parents and schools to apply the use of psychology to improve the learning and development of all children Education Welfare Service (EWS)
Aims to remove barriers to learning by giving children and families access to services on a wide range of issues including bullying, family illness or difficult behaviour. FIRST Team Early Childhood Service St. James Campus St. James Road West Sussex, PO19 7HA Tel: 01243 520828
Tel: 0845 075 1007 Works with schools and families to ensure high levels of school attendance. Ethnic Minority Achievement Team (EMAP) The Mill Primary School Ifield Drive Crawley, RH11 0EL Tel: 01293 525320 Email: email@example.com Works with schools and families to ensure access to the curriculum for children for whom English is an additional language
Provides training and advice to early years and childcare settings in meeting the needs of children with additional needs Global Mediation Tel: 020 8 441 1355 Email: firstname.lastname@example.org Web: www.globalmediation.co.uk Provides mediation on a number of issues including a specialist service over disputes concerning children with special educational needs
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IPSEA (Independent Parent Special Educational Advice) Tel: 0800 018 4016 (General Advice Line) Tel: 0845 602 9579 (Tribunal Helpline) Web: www.ipsea.org.uk Provides free and independent advice to parents of children with special educational needs LEO Online Learning Burgess Hill PRU Cuckfield Road Burgess Hill, RH15 8RE Tel: 01444 231235 Mob: 07872820268 Online learning for children in West Sussex at KS3 and KS4 who for varying reasons cannot attend school Links College Tel: 01243 642582 Provides short-term educational opportunities and reintregration for children who for varying reasons cannot attend school
Listening Books Tel: 020 7 407 9417 Email: email@example.com Web: www.listening-books.org.uk Postal and internet based library service providing audio books for people of all ages who find it difficult or impossible to read owing to illness or disability National Institute of Conductive Education Web: www.conductive-education.org.uk Workshops, training and out-reach services on the principals and methods of conductive education for children, adults and their families Network 81 Tel: 0845 077 4056 (Helpline) Email: firstname.lastname@example.org Web: www.network81.org Information, advice, training and befriending to parents on issues around special educational needs OAASIS Tel: 0800 197 3907 (Helpline) Email: email@example.com Web: www.oaasis.co.uk - 187 -
Education Directory Information, advice and resources for parents and teachers working with children and young people with Aspergers Syndrome, Autism or other learning difficulties
Home visiting educational service for children with additional support needs
Ofsted (Office for Standards in Education)
Tel: 020 7 697 2599 Email: firstname.lastname@example.org Web: www.pre-school.org.uk
Tel: 0300 123 1231 Email: email@example.com Web: www.ofsted.gov.uk Government body that regulates and inspects schools and childrenâ€™s services Parents for Inclusion Tel: 0800 652 3145 (Freephone Helpline) Email: firstname.lastname@example.org Web: www.parentsforinclusion.org Network of parents of children with disabilities providing information, advice, training and campaigning for inclusive education Portage Chichester: 01243 536182 Crawley: 01293 615325 Mid-Sussex & Horsham: 01444 243150 Worthing: 01903 242558
Pre-School Learning Alliance
Information, advice, training and support to parents and professionals Sensory Support Team Sensory Support Team Base Rydon Community College Rock Road, Storrington, RH20 3AA Tel: 0845 0751007 Email: email@example.com Provides support to early years and educational settings in the inclusion of children with sensory impairments SENDIST (Special Educational Needs and Disability Tribunal) Tel: 01325 392760 Email: firstname.lastname@example.org Web: www.sendist.gov.uk Tribunal which hears appeals by par-
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ents against decisions made by their local education authority concerning their childâ€™s education Skill (National Bureau for Students with Disabilities) Tel: 0800 328 5050 Email: email@example.com Web: www.skill.org.uk Information, advice, training and campaigning to improve employment and education opportunities for young people with disabilities Social Communication Team Contact: Pam Cox Tel: 01903 839211 Email: firstname.lastname@example.org Works with staff in mainstream schools to support children with Autism or Social Communication Difficulties. Traveller Education Support Team 4th Floor Education Office (South) Centenary House, Durrington Lane, Worthing, BN13 2QB Tel: 01903 839271 Email: Sheila.oâ€™email@example.com
Supports schools in narrowing achievements, gaps in attendance and accelerate progress for Gypsy Roma Traveller children Improving the attendance and achievements of children in care, foster homes, residential homes, etc. Virtual School for Looked After Children The Bridge Resource and Skills Centre Cuckfield Road Burgess Hill, RH15 8RE Contact: Alison Neighbour Tel: 01444 233279 Email: firstname.lastname@example.org West Sussex Parent Partnership Service 65 Westgate Chichester, PO19 3RJ Tel: 0845 075 1008 Email & Web: email@example.com http://wsgfl.westsussex.gov.uk/pp Provides impartial information and advice to parents of children with special educational needs in West Sussex - 189 -
Grant Making Directory 3H Fund
Action for Kids
B2, Speldhurst Business Park Langton Road Speldhurst Tunbridge Well, TN3 0AQ
Ability House 15a Tottenham Lane Hornsey London, N8 9DJ
Tel: 01892 860219 Email: firstname.lastname@example.org Web: www.3hfund.org.uk
Tel: 0845 300 0237 Email: email@example.com Web: www.actionforkids.org
Grants are awarded to disabled people, their family and carers on low income to take holidays in the UK. To request an application form call the fund on the number listed above.
Provide mobility aids for children and young people aged under 26. To discuss making an application call the helpline listed above. Argus Appeal
ACT Foundation Argus House Crowhurst Road Hollingbury Brighton, BN1 8AR
61 Thames Street Windsor, SL4 1QW Contact: The Grants Manager Tel: 01753 753901 Email: firstname.lastname@example.org Web: www.theactfoundation.co.uk
Tel: 01273 544544 Email: email@example.com Web: www.theargus.co.uk/argusappeal/ requestfunding
Grants are awarded towards building costs, specialised equipment and financial assistance towards the costs of a short-term respite breaks. Individuals must apply via an application form available for download on the charityâ€™s website.
Provides grants towards sickness, poverty, hardship, for lonely and needy older people and underprivileged children, in particular at Christmas. For further information on applying visit the website listed above.
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Ataxia UK Lincoln House Kennington Park 1-3 Brixton Road London, SW9 6DE
to young people with additional barriers in life including a disability. Further details on how to apply are available on the website listed above. Blatchington Court Trust
Tel: 0845 644 0606 Email: firstname.lastname@example.org Web: www.ataxia.org.uk Provide grants for the purchase of wheelchairs and computers. To qualify applicants must have exhausted all other funding sources and be referred by the charity’s advocacy service. For further information visit the website listed above. Lawrence Atwell Charity
Ridgeland House 165 Dyke Road Hove, BN3 1TL Contact: Alison Evans, Executive Manager Tel: 01273 727222 Email: email@example.com Web: www.blatchingtoncourt.org.uk
c/o the Skinners Company Skinners’ Hall 8 Dowgate Hill London, EC4R 2SP
Provides grants in support of vision impaired and multi-disabled young people under the age of 30 in West Sussex. For further information contact the Executive Manager on the number listed above.
Contact: The Atwell Administrator
British Kidney Patient Association
Tel: 0207 213 0561 Email: firstname.lastname@example.org Web: www.skinnershall.co.uk
3 The Windmills St Mary’s Close Turk Street Alton, GU34 1EF
Provide grants towards vocational training and the costs of getting a job for young people from low income families. Priority is given
Tel: 01420 541424 Email: email@example.com Web: www.britishkidney-pa.co.uk
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Grant Making Directory Provides grants to children and adults with kidney disease. Grants can be for domestic bills, household goods, travel expenses to hospital, education and training costs and holidays. Application forms are available to download from the charityâ€™s website. Brittle Bone Society BBS Grant Application Department Grant-Paterson House 30 Guthrie Street Dundee, DD1 5BS Tel: 01382 20446 Email: firstname.lastname@example.org Web: www.brittlebone.org Provides grants for wheelchairs or specialist equipment for people with Brittle Bone Disease. Initial enquiries should be made by phone or email. Grant applications must include a letter of support from a relevant professional, for example, an occupational therapist. Frank Buttle Trust Audley House 13 Palace Street London, SW1E 5HX Tel: 0207 828 7311 Email: email@example.com
Web: www.buttletrust.org/grantaid Supports disadvantaged children and young people. Grants are for essential household items, for the costs of school fees of children whose home life is precarious and for young people in further education, or to help young people not in education, employment or training. For further information on individual grant programmes and how to apply visit the website listed above. Carers Support Service Worthing & District Methold House North Street Worthing, BN11 1DU Contact: Hari Chhokar, Service Manager Tel: 01903 536378 Email: firstname.lastname@example.org Web: www.carerswsx.org.uk Various grants are available for carers living in Adur, East Arun, Worthing and Chanctonbury including towards the costs of short-breaks, education and transport needs. For further information contact the charity on the email or telephone number listed above.
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Caudwell Children Minton Hollins Shelton Old Road Stoke on Trent, ST4 7RY Tel: 0845 300 1348 Email: email@example.com Web: www.caudwellchildren.com
rological conditions or brain injury. Grants are typically given towards mobility equipment, touch-screen computers, specialist therapies, sensory toys, etc. Guidelines and an application form are available on the Cerebra website. Margaret Champney Fund
Provides funding towards the costs of equipment, (including sports equipment) treatment and therapies for sick, autistic and disabled children in the UK and holidays for children with life threatening conditions. For further information visit the website listed above.
c/o Ogilvie Charities The Gate House 9 Burkitt Road Woodbridge, IP12 4JJ
Small grants for carers primarily in order to take a short break or holiday. Applications must be made via a social worker, community nurse or other relevant agency.
Second Floor Offices The Lyric Building King Street Carmarthen Wales, SA31 1BD
Tel: 01394 388746 Email: firstname.lastname@example.org Web: www.theogilvietrust.org.uk
Chichester Welfare Trust
Contact: Kelly Gadd, Head of Parent Support
6 Norwich Road Chichester, PO19 5DF
Tel: 0800 328 1159 Email: email@example.com Web: www.cerebra.org.uk
Telephone: 01243 789301
Grants towards improving the quality of life of children affected by neu-
Provides grants for people who are in need, sick, disabled or infirm and live in the city of Chichester.
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Grant Making Directory Children’s Heart Federation
application form are available from the trust’s website
CHF Family Grant Administrator Children’s Heart Federation 2-4 Great Eastern Street London, EC2A 3NW
Cheyne Charity for Children with Cerebral Palsy Aviation House 1-7 Sussex Road Haywards Heath, RH16 4DZ
Tel: 020 7 4220630 Email: firstname.lastname@example.org Web: www.chfed.org.uk
Contact: Rupert Rohan, Chairman Provides grants to travel costs whilst a child is in hospital, home appliances and specialist equipment. Application forms are available from the charity’s website or by phoning the number listed above. Application forms need to be completed by a professional who knows your circumstances.
Tel: 01444 450901 Web: www.cheynecharity.org.uk Provides grants to families of children with Cerebral Palsy including towards the cost of essential equipment. For further information visit the website listed above.
CBIT (Child Brain Injury Trust)
Child Brain Injury Trust Unit 1, The Great Barn Baynards Green Farm Nr Bicester, OX27 7SG
The Moorings Rowton Bridge Christleton, CH3 &AE Tel: 01244 335622 Email: email@example.com Web: www.children-today.org.uk
Tel: 0845 601 4939 Email: firstname.lastname@example.org Web: www.cbituk.org Provide small grants (maximum £100) for children with brain injuries and their siblings to take part in social activities. Guidelines and an
Provides grants towards mobility equipment, walking aids, trikes, educational toys, communications aids, adapted car seats, lifting aids, and posturepedic sleep equipment
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for children and young people with disabilities. For further information call the charity on the number given above.
Cystic Fibrosis Trust 11 London Road Bromley Kent, BR1 1BY
Chloe Cotton Trust Tel: 0300 373 1000 Email: email@example.com Web: www.cftrust.org.uk
49D Main Street Burton Joyce Nottinghamshire NG14 5DX Tel: 0115 931 4348 Email: firstname.lastname@example.org Web: www.chloecottontrustfund.co.uk Provides grants, days out, holidays and other recreational activities to children with Cystic Fibrosis, their families and carers. For further information contact the trust on the number or email given above. Community Care Grant Government grant to enable people living on benefits (including carers of disabled people) to continue to live in the community or to ease exceptional financial pressure. For further information search for community care grant at www.direct.gov.uk
Provide welfare grants for household items directly related to Cystic Fibrosis, for respite breaks, paying for help at home, financial help for those setting up home for the first time, help with costs during hospitalisation, helping a young adult’s first annual prescription prepayment certificate and funeral expenses. Application forms are available to download from the trust’s website or by calling the number listed above. Roald Dahl’s Marvellous Children’s Charity 81a High Street Great Missenden, HP16 0AL Tel: 01494 890465 email@example.com Web: www.roalddahlfoundation.org Provides grants to families with financial difficulties who are caring for children with neurological or blood
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Grant Making Directory related conditions. Maximum grant is £500 and can be spent in different ways including, towards the costs of mobility equipment, fibre optic sensory toys, white goods, utility bills, travel and subsistence costs. Applications must be made by a professional who knows the family, for example, a specialist nurse or social worker. Guidelines are available on the foundation’s website.
help children who are terminally or seriously ill fulfil their dreams. To nominate a child complete the online application form at the website listed above. Family Action Grants Service Family Action 501-505 Kingsland Road London, E8 4AU
Disabled Facilities Grant Local council funding towards the costs of adapting the home and/or to provide better facilities within it in order to allow disabled people to continue living in the property. Maximum grant in England is £30,000. For further information contact the housing or environmental health department of your local council.
Tel: 0207 241 7459 Email: firstname.lastname@example.org Web: www.family-action.org.uk Provides welfare and educational grants to families on benefits or low incomes. Guidelines and application form are available to download from the charity’s website. Family Fund
Dreams Come True Knockhundred House, Knockhundred Row, Midhurst, West Sussex , GU29 9DQ Tel: 01730 815000 (Freephone) Email: email@example.com Web: www.dctc.org.uk Provides funding and support to
4 Alpha Court Monks Cross Drive York, YO32 9WN Tel: 0845 130 4542 or 01904 621115 Email: firstname.lastname@example.org Web: www.familyfund.org.uk Provide grants to families with a disabled child or young person whose household income is below £28,000.
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Grants can be used for a wide variety of purposes including washing machines, cookers, beds, driving lessons, outings and holidays, specialist equipment, etc. Further information on eligibility and how to apply are available on the fund’s website. Family Holiday Association 16 Mortimer Street London, W1T 3JL Tel: 020 7 436 3304 email@example.com Web: www.fhaonline.org.uk Provides funding to enable families on low income to have a holiday. Applications must be made by referral from a welfare agent, for example, social worker, health visitor, GP, etc. Further information on how to apply is available from the organisation’s website. Farrell Trust PO Box 291 Letchworth Garden City, SG6 9ES Contact: The Administrator Email: firstname.lastname@example.org Web: www.farrelltrust.org.uk
Grants of up to £500 are provided to disabled people and their carers to take a short break, holiday or respite. Priority is given to disabled people on low incomes or benefits. Grant criteria and application form are available to download from the trust’s website. Florence Nightingale Aid in Sickness Trust 6 Avonmore Road London, W14 8RL Contact: Ann Griffiths Tel: 020 7 605 4244 Web: www.fnaist.org.uk Provides grants to people of all ages who are sick, in poor health or disabled and who require medical services and/or equipment to improve their quality of life. Funding available for convalescent and respite care, medical aids, household aids, fridges and essential drug storage. If at the time of applying funding is limited priority is given to people who have professional, secretarial or administrative qualifications. Applications are available to download from the trust’s website or by calling the correspondent. Applications need to be completed by a relevant professional, for example, GP, social worker or healthcare professional.
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Grant Making Directory Gardener’s Trust for the Blind
as low as £50 or as high as £5,000. Guidelines and an application form are available from the trust on request.
c/o Miss Angela Stewart Smithfield Accountants 117 Charterhouse Street London, EC1M 6AA
Happy Days Children’s Charity
Grants for a variety of purposes include pensions, maintenance, education and training to people who are blind or partially sighted.
Clody House 90-100 Collingdon Street Luton, LU1 1RX
Grant making guidelines do not appear to be available so we would recommend making an initial enquiry in writing to the correspondent listed above. R. L. Glasspool Charity Trust
Contact: Angela Dearmer, Grants Officer Tel: 01582 755999 Email: email@example.com Web: www.happydayscharity.org Provide grants towards the costs of day trips, outings and holidays for disadvantaged children and young people aged 3-17 and their families. Further details on grant programmes and how to apply are available on the charity’s website.
Second Floor Saxon House 182 Hoe Street Walthamstow London, EH17 4QH Contact: Mrs F. Moore, Charity Administrator
Joseph Patrick Trust
Tel: 0208 520 4354 Provides grants to individuals for the relief of poverty, distress, ill health or disability. Applications must be made via an eligible agency, for example, a charity. Grants can be
c/o the Muscular Dystrophy Campaign 61 Southwark Street London, SE1 0HL Tel: 020 7 803 4814 Email: firstname.lastname@example.org Web: www.muscular-dystrophy.org
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Provides grants for wheelchairs, mobility equipment, therapy equipment and discretionary payments for the ‘relief of stress’ to people with Muscular Dystrophy. Further information is available on the MDC website listed above.
Provides specialist equipment like electric wheelchairs, mobility aids and computer equipment for children with disabilities. Also provide essential items like shoes, clothing, bedding and specialist toys to children with special needs in low income families. Cash grants are not awarded. Further information on how to apply is available on the charity’s website.
League of the Helping Hand PO Box 342 Burgess Hill, RH15 5AQ
B. V. MacAndrew Trust
Contact: The Secretary
9 Albert Mews Third Avenue Hove, BN3 2PP
Tel: 01444 236099 Email: email@example.com Web: www.lhh.org.uk
Contact: Roger H. Clow, Trustee
Grants are provided to people in financial hardship owing to disability or illness including carers of children with special needs. An application form which must be completed by an official agency, for example, social services, can be downloaded from the charity’s website.
Tel: 01273 736272
Lifeline 4 Kids
Mid Sussex Mencap
215 West End Lane West Hampstead London, NW6 1XJ
20 Allwood Crescent Wivelsfield Green Haywards Heath, RH17 7RP
Tel: 020 7 794 1661 Web: www.lifeline4kids.org
Tel: 01444 471431 Email: firstname.lastname@example.org Web: www.midsussex.mencap.org.uk
Provide grants to help ‘poor and deserving young people to get a good start in life’. Applications via a intermediary charity or suitable organisation should be made in writing to the trustee listed above.
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Grant Making Directory Miracles
PO Box 3003 Littlehampton, BN16 1SY
Motability Operations City Gate House 22 Southwark Bridge Road London, SE1 9HB
Tel: 01903 775673 Email: email@example.com Web: www.miraclesthecharity.org Provide crisis grants to children and families ‘who fall through the net of other aid agencies’. Grant guidelines do not appear to be available. For further information we suggest making an enquiry directly to the charity. Mobility Trust 17B Reading Road, Pangbourne, Reading, Berkshire, RG8 7LR
Tel: 0845 456 4566 Email: firstname.lastname@example.org Web: www.motability.co.uk Provides grants towards the costs of purchasing a car, adaptations like swivel seats or hand controls, and driving lessons for young people aged 16-24. For further information on how to apply call the customer services team on the number listed above. Motability also administer a government grant programme for people who need a wheelchair accessible vehicle.
Contact: Mrs Anne Munn Provides funding towards the purchase of powered wheelchairs and scooters for disabled people who cannot obtain one from statutory sources or purchase the equipment themselves. Applications in writing to the correspondent detailing why the equipment is needed and details of the person’s disability.
NBCS (National Blind Children’s Society) 1st Floor Shawton House, 792 Hagley Road West, Quinton, Birmingham, B68 0PJ Contact: Hazel Russell Tel: 01278 764 770
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Email: email@example.com Web: www.nbcs.org.uk Provides grants towards the educational and recreational goals of a child or young person under the age of 25. All grant applications need to be endorsed by a qualified visually impaired professional, for example, a social worker or teacher. Application forms are available from the correspondent listed above. Newby Trust Ltd Hill Farm Froxfield Petersfield, GU32 1BQ Tel: 01730 827557 Email: firstname.lastname@example.org Web: www.newby-trust.org.uk Grants ranging from ÂŁ10 to ÂŁ200 are provided towards the medical welfare of individuals living on benefits or a low income. Applications which are made online must be submitted by social services or a similar organisation. Newlife Foundation for Disabled Children Newlife Centre Hemlock Way Cannock, WS11 7GF
Tel: 01543 462 777 Email: email@example.com Web: www.newlifecharity.co.uk Provides grants towards the costs of equipment for disabled children and young people under the age of 18. For further information contact the charity on the number listed above and ask to speak to a Newlife Nurse. Paul Rooney Foundation (Sussex Community Foundation) c/o Sussex Community Foundation Suite B Falcon Wharf Railway Lane Lewes, BN7 2AQ Contact: Mary Carruthers, Grants Manager Tel: 01273 409440 Email: firstname.lastname@example.org Web: www.sussexgiving.org.uk Provides grants to help children with special needs and their families particularly those with life limiting illnesses. Applications should be made via an intermediary charity or other suitable organisation. For further information on eligibility or how to apply contact the Sussex Community Foundation who manage the fund.
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Grant Making Directory Pearson’s Holiday Fund
PO Box 3017 South Croydon, CR2 9PN
St Luke’s House 270 Sandycombe Road Kew, TW9 3NP
Contact: Bryan K. H. Rodgers, General Secretary
Tel: 0208 940 2575 Web: www.reactcharity.org
Tel: 0208 657 3053 Email: general.secretary@ pearsonsholidayfund.org Web: www.pearsonsholidayfund.org Grants are provided to disadvantaged children aged 4-16 to have holidays or participate in respite activities away from their normal environment. Applications must be made by a third party, for example, health visitor, social worker, teacher, etc. Guidelines on how to apply are available on the fund’s website.
Provides grants to families caring for a child with a life threatening or life limiting illness. Funding is available towards specialist medical equipment not available through the NHS, domestic equipment which help contribute towards a child’s quality of life and hospital expenses (including travel food or related costs). React can also provide free holidays at one of their holiday homes. Application forms are available to download from the charity’s website.
The Priority Trust
Tel: 020 7 193 0432 Email: email@example.com Web: www.prioritytrust.org
Units 5 & 6 Swan Wood Park Gun Hill, Horam East Sussex, TN21 0JS
Provides grants towards wheelchairs and mobility equipment for disabled children. For further information contact the trust on the telephone number or email address listed above.
Tel: 01825 873045 Email: firstname.lastname@example.org Web: www.sasbah.org.uk Provides grants to its service users where no statutory help is available.
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For further information contact the charity’s main office on the number given above.
a home visit or other meeting with a support worker to assess the overall caring support needs. For further information ring your local Carers Support Service on the numbers given above.
Sequal Trust The Sequal Trust 3 Ploughman’s Corner Wharf Road Ellesmere, SW12 0EJ
Sickle Cell Society 54 Station Road London, NW10 4UA
Tel: 01691 624 222 Email: email@example.com Web: www.thesequaltrust.org.uk
Tel: 020 8 961 7795 Email: firstname.lastname@example.org Web: www.sicklecellsociety.org
Fundraises for the purchase of communications aids for children and adults who are severely disabled. An application can be completed online at the trust’s website.
A welfare fund, educational fund and bursary for children’s holidays all available from the Sickle Cell Society. An application form and guidelines are available to download from the charity’s website or by contacting them on the number given above.
Short Break Carers Fund Worthing and District Carers Support Service. Tel: 01903 536378 North and Mid Sussex Carers Support Service Tel: 01293 657040 Regis Chichester and Rural Carers Support Service.Tel: 01243 537011 Funding available to allow any carer to have a break. Priority is given to carers who have not had a break in the previous 12 months. Applicants not known to one of the Carers Support Services will be required to have
Snowdon Award Scheme Unit 18, Oakhurst Business Park Wilberforce Way Southwater , RH13 9RT Contact: Mandy Edwards or Sharon Richardson, Administrators Tel: 01403 732899 Email: email@example.com Web: www.snowdonawardscheme.org.uk
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Grant Making Directory Grants ranging from £250 to £2,500 awarded to students with sensory or physical disabilities to help cover additional costs like computers, mobility equipment and human help. Further information on eligibility criteria and the application process are available on the website listed above. Starlight Children’s Foundation Tel: 020 7 262 2881 Web: www.starlight.org.uk Grants wishes to children life threatening or life shortening illnesses. To nominate a child complete the ‘wish referral form’ on the charity’s website. Stars Foundation for Cerebral Palsy
Steps Charity (Claire Furmedge Equipment Bursary Fund) Warrington Lane Lymm Cheshire, WA13 0SA Tel: 01925 750271 Email: firstname.lastname@example.org Web: www.steps-charity.org.uk Provide grant of up to £115 towards the purchase of a special car seat or hip spica high chair for children with lower limb conditions like club foot or hip conditions. An application form is available from the address given above or can be downloaded from the charity’s website. Student Disability Assistance Fund
Contact: Anne Killick
c/o BAHSHE BAHSHE Office 35 Hazelwood Rd Bush Hill Park Enfield, EN1 1JG
Email: email@example.com Web: www.starsorg.co.uk
Contact: Sandra Furmston, Administrative Secretary
Provides grants towards mobility equipment and communication aids for people with cerebral palsy. For further information email or write to the charity at the addresses listed above.
Tel: 0208 482 2412 Email: S.Furmston@mdx.ac.uk Web: www.bahshe.co.uk/studentdisability-fund/student-disabilityfund.html
75 London Road Southborough, TN4 0NS
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Grants of £500 available to disabled students aged 18 or over in higher education to help keep up with their studies. Eligible expenditure include specialist computer equipment, extra travel costs, the costs of note-takers or signers. Funding cannot be awarded to general living costs. Students who are disabled but not entitled to Disabled Students Allowance are more likely to receive a grant than those who receive DSA. An application can be completed on the fund’s website. Sure Start Maternity Grant Government grants towards the costs of a new baby for people on low income and certain benefits. Can apply if your baby is due within 11 weeks, was born within the last 3 months or if you are not the birth parent but have become responsible for a child not more than one year old. Maximum grant is £500. For further information search for Sure Start Maternity Grant at
Sussex Snowdrop Trust 3 Kingley Centre Downs Road West Stoke Chichester, PO18 9HJ
Contact: Care at Home Team Tel: 01243 815227 Email: firstname.lastname@example.org Web: www.sussexsnowdroptrust.com Provides financial support to families of children with life threatening illnesses. Funding can be used towards a wide variety of purposes including household bills, specialist equipment, bedding and toys, computers, transport costs, etc. For further information on eligibility and catchment area visit the website listed above. Talisman Charitable Trust Basement Office 354 Kennington Road London, SE11 4LD Contact: Philip Denman Web: www.talismancharity.org Grants towards education, health, housing, disablement and disability to UK individuals described as “going short”. Applications should be made via another charitable organisation, local authority or Citizen’s Advice Bureau. Guidelines on how to apply are available on the charity’s website.
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Grant Making Directory Three Oaks Trust
Tree of Hope Children’s Charity
PO Box 893 Horsham, RH12 9JD
Bexhill-on-Sea The Tree of Hope Children’s Charity, 31 De La Warr Road, Bexhill-on-Sea, East Sussex, TN40 2JA
Email: email@example.com Web: www.threeoakstrust.co.uk Provide small grants to low income families and children with disabilities towards the costs basic furnishings, clothing, contributions towards the costs of washing machines, fridges, telephone connections, etc. plus towards educational costs. Applications must be made via Crawley and Horsham Social Services and Citizen Advice Bureau and other ‘invited’ local organisations. For further information visit the trust’s website.
Contact: Corinne Gardner (Chairperson and Founder)
Southbank House Black Prince Road London, SE1 7SJ
Trefoil House East Lodge, Gogarmuir Road, Edinburgh, EH12 9BZ
Tel: 020 7793 2357 Email: firstname.lastname@example.org Web: www.tourettes-action.org.uk Grants of up to £500 available to improve the quality of life of people with Tourette Syndrome. Application form and guidelines are available on the charity’s website or by ringing the number listed above.
Tel: 01424 224656 Email: email@example.com Web: www.treeofhope.org.uk Provides funding towards specialist surgery, treatment and therapy for sick and disabled children. We could not find guidelines on their funding criteria so would suggest contacting the charity for further information.
Tel: 0131 339 3148 Email: firstname.lastname@example.org Web: www.trefoil.org.uk Provides grants for holidays or the personal development of children and young people with special needs. Guidelines and an application form are available from the charity’s website.
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Variety Club Children’s Charity
provision of sport and leisure activities for disabled people, in particular for wheelchair users. Applications on behalf of individuals must be made through a charitable organisation or equivalent recognised body. Grant applications are considered quarterly. Guidelines on how to apply are available from the trust’s website.
Variety Club House 93 Bayham Street London, NW1 0AG Contact: Sue Hincks, Grants Programme Manager Tel: 020 7428 8100 Email: email@example.com Web: www.varietyclub.org.uk/howwe-help/individuals
West Sussex Association for the Blind
Grants ranging from £100 to £10,000 are available for disabled children and their families. Funding can be used on items like bath mats and hoists, mobility equipment, learning and communication equipment, plastic sheets and feeding tubes. For further information contact the Grants Programme Manager on the number listed above. Bruce Wake Charitable Trust PO Box 9335 Oakham Rutland, LE15 0ET Tel: 0844 879 3349 Email: firstname.lastname@example.org Web: www.brucewaketrust.co.uk Grants are awarded towards the
4sight Bradbury Centre 36 Victoria Drive Bognor Regis, PO21 2TE Tel: 01243 838003 Email: email@example.com Web: www.4sightsussex.co.uk Provides free radios and cassette players to people registered blind or partially sighted who are aged over 8. For further information contact WSAB on the number or email listed above. West Sussex Carers Support Services Carers Support Service (Worthing & District). Tel: 01903 536378 Carers Support Service (Regis, Chichester & Rural). Tel: 01243 537011
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Grant Making Directory Carers Support Service (North and Mid-Sussex). Tel: 01293 657040
Funding is provided through the NHS for carers to take a break. Priority is given to carers who have not had a break in the last 12 months; applications will not be considered if the carer has already paid for a break. The maximum amount a carer can apply for in any 12 months is £300 or up to £500 if the cared for person is accompanying them. For further information contact your local carer support service on one of the numbers given above. Whizz Kids
Fitzalan Howard Day Centre Pavilion Road Worthing, BN14 7EF Contact: Pauline Fox, General Manager Tel: 01903 522399 Email: Pauline@worthingscope.org.uk Web: www.worthingscope.org.uk Provides welfare grants to people with Cerebral Palsy. We do not have any further information so would suggest contacting the General Manager on the number or email listed above. Other Sources of Support
Elliot House 10-12 Allington Street London, SW1E 5EH Contact: Children’s Services Team Tel: 0845 052 1231 Web: www.whizz-kids.org.uk Provide mobility equipment to children who have not been able to get the required equipment or funding through the NHS. Further information on how to apply is available from the charity’s website.
Lion’s Clubs, Masonic Lodges, Rotary Clubs, the Round Table and Soroptomists are known to be active in their local communities supporting individuals and families in need. You can find the local branches of any of these societies using the following links: www.lionsclub.org.uk www.rotary-rbi.org/districts www.roundtable.co.uk/locations www.soroptimist-gbi.org www.sussexmasons.org.uk
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All Together Now
Disability news, online forum and information on a range of subjects including holidays, employment, classified ads, etc.
News, information service and magazine for people affected by disability
AbleHere.com www.ablehere.com Networking website for disabled people run and controlled by disabled people Adviceguide www.adviceguide.org.uk
Artsline www.artsline.org.uk Information, news and forums promoting disabled peopleâ€™s access to the arts ASD Friendly www.asdfriendly.org
Public information service of the Citizenâ€™s Advice Bureau
Online community of parents and carers of people with Autism and Aspergers Syndrome
Non-profit website providing information on rights and legal issues
Information and advice on daily living
Information and forum for people affected by ADHD
Online quarterly magazine on all aspects of Autism - 209 -
Web Directory BUPA
Website of private health providers which contains an A-Z of medical topics
Information on accessible accommodation, places to visit, places to eat, etc. for disabled people and their families
Online directory of UK counsellors and psychotherapists
Online guides on the accessibility of public venues
Disabled Information from the Disabled
Carers section of UK government website
Information, forum and chat-rooms managed by disabled people
Disability Arts Online
Online journal of disabled artists Disability Now
Travel information and advice for disabled people
Online magazine on disability issues
www.epiweb.org Online information for parents and carers of children who suffer from epilepsy
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Focus on Disability
Online information and advice for disabled people and their carers The Golden Freeway
Email discussion group for parents of children with hemiplegic cerebral palsy Housebound Forums
Online community of families of children with disabilities
Online forums for people who are disabled and their carers
The Guardian (Society)
Society section of the Guardian newspaper which contains many articles on disability and related issues
Website of HM Revenue & Customs
Information and advice on equipment for daily living
Online classified ads including accommodation, cars, jobs, etc.
Living Made Easy
Online networking and forums for parents and families of children with disabilities
Online toolkit for those caring for children and young people with emotional and behavioural difficulties
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Web Directory Mumsnet
Parents of Disabled Children
Information, advice, guides, news, blogs, etc. for parents
Online forum for parents of disabled children
Parents with Disabilities Online
Medical information provided by the NHS
Online information and resources for parents with disabilities Patient UK
Online information on health and disease written by GPs for patients and non-medical people
Online information and health & symptom checkers Ouch!
Articles, blogs, message boards and a downloadable radio broadcast by the BBC for anyone affected by disability PALS Online www.pals.nhs.uk Website of the Patient Advice and Liaison Services
Online information and resources for disabled people in West Sussex including their parents and carers, and professionals working with them Samuelâ€™s World www.samuelsworld.co.uk Online information and resources for parents of children with Tourette Syndrome, ADHD and other disorders
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Online community of disabled people and their friends
Information for parents and teachers and a section for young people with learning difficulties
Online forum for families of children with special needs
Online directories of benefits and grants and other information on managing money
Special Kids in the UK
Valuing People Now
Online support group for families of children with special needs Special Needs Kids
Website of government strategy to improve the lives of people with learning disabilities
West Sussex Carers Online
Information directory and shopping site for parents and carers of children with special needs
Talk About Autism
West Sussex Grid for Learning
Online community for parents of children with Autism
Exhaustive education website for West Sussex managed by the county council
Information on support and services available to carers in West Sussex
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Web Directory The Wheel Life www.thewheellife.com Social networking site for wheelchair users Wikipedia www.wikipedia.org Online encyclopaedia written and edited by volunteers Youreable www.youreable.com Online community of and for disabled people
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Parent & Family Care Foundation * Prognosis * Graduated Approach * Signalong * Spider Therapy * Portage * Network 81 * Kaye Walker * Conductive Education * Gastrostomy * Continuing Care * Direct Payments * Paraplegia * SENDIST * Advocacy * Muscle Tone * Family Fund * Inclusion * Sure Start * Gross Motor Skills * Makaton * Bobath Therapy * Note in Lieu * Statutory Assessment * Blue Badge * Personalisation * Triage * CT Scan * Key Worker * Motability * SALT * Ambulatory * Development Delay * Aiming High * Modification * Occupational Therapist * Sensory Needs Service * Acupuncture * Needs Assessment * Gait * Educational Psychologist * PALS * School for Parents * Child Tax Credits * Hypertonia * OCD * Provision Map * DLA * Connexions * Orthotist * Pastoral Support Plan * Social Model of Disability * Learning Support Assistant * Expert Patient Programme * Congenital * Parent Partnership * Triad of Impairments* Disabled Facilities Grant * Supercession * MMR * Individual Educational Plan * Disagreement Arrangement * Community Equipment * Audiologist * Botox * Early Bird * Hypoxia * Muscle Tone * PMLD* Re-consideration * SEN Tribunal * Choice Advice * Disability Equality Duty * CAF * Play Therapy * Valuing People Now * Statement * Disapplication * PECS* Parent Carer * Jargon Buster
Disability Jargon Buster Introduction This jargon buster is a collection of words used in health, social services and education – words, acronyms and phrases we come across every day. The jargon buster is not comprehensive. That would be all but impossible but we hope those words and terms we have included are the ones most relevant to parents and families. If you would like to comment on our jargon buster or suggest other words and phrases we should include please contact our Project Manager, Brian O’Hagan, at brianohag@aol. com For further information on the foundation please visit our website www.parentandfamilycare.org.uk. ABI – (Acquired Brain Injury), medical term referring to an injury to the brain occurring after birth. For further information visit www.ukabif.org.uk Access to Work – support to enable disabled people to work, including financial help to you or your employer. Support can include help with transport costs, equipment needed
for the workplace, a communicator at interviews or a support worker to help disabled people at work. For further information visit www.direct.gov.uk ACE – (Advisory Centre for Education), national charity providing independent advice to parents and carers of children in state funded education www.ace-ed.org.uk Acupuncture – complimentary or alternative form of medicine in which fine needles are inserted into various points on the body. Acute – the rapid onset of a disease. Also refers to a disease that is short in duration but progresses rapidly. Advices – term to describe reports provided by both parents and professionals as part of the process of statutory assessment of special educational needs (see below). Advocacy – independent support in representing and acting on behalf of an individual, family or group. Often used to support people with learning disabilities. ADL – (Activities for Daily Living), everyday tasks like eating, bathing, dressing, moving around, etc.
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Aiming High for Disabled Children – former Labour government programme designed to improve access to services for disabled children and their families.
Audiometrician – health professional who specialises in measuring hearing ability.
Ambulatory – medical term relating to the ability to walk. Annual Review – yearly meeting between teachers, parents and children with special educational needs to review the child’s progress. AFOs – (Ankle Foot Orthosis), or splint, worn on the lower leg and used to support, straighten and correct muscle functions. Appointee – a person who acts on behalf of another, for example, a parent, friend or professional who acts on behalf of someone claiming disability living allowance. Assistive Technology – a system or device designed to enable independence for disabled people, for example, specialist computers and software. Audiologist – health professional who specialises in identifying and treating hearing and balance disorders.
Augmentative & Alternative Communication – term used to describe various methods of communication which support or replace the spoken word. Methods vary from low-tech picture cards to high-tech electronic speech generating devices. For further information visit www.communicationmatters.org.uk BESD – (Behavioural, Emotional and Social Difficulties) – term used to describe a range of difficulties in children including being withdrawn and isolated, disruptive, hyperactive or lacking concentration, having immature social skills or other forms of challenging behaviour. Blue Badge – parking permit that allows people with severe mobility problems to park nearer to where they need to go. Applies to on-street parking only and enables badge holders to park on single and double yellow lines for up to 3 hours. For further information search for blue badge at www.westsussex.gov.uk Bobath Therapy – intense form of physiotherapy for children with cerebral palsy which aims to maxim-
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Disability Jargon Buster ise the child’s ability to move, sit and function as normally as possible. For further information visit www.bobath.org.uk Botox – (Botulinum Toxin A), a powerful toxin which in small doses is used to paralyse nerve endings and the flow of messages to stiff muscles. Commonly used in the treatment of cerebral palsy. For further information visit : www.botulinumtoxin.co.uk
CBT – (Cognitive Behavioural Therapy) - term used to describe a number of therapies that involve trying to change the way a person thinks and behaves. Often used in treating children with depression, anxiety disorders, low self esteem and/or behavioural problems. For further information visit www.babcp.com Care Package – the services and support provided following assessment by social services.
CAF – (Common Assessment Framework) method of assessment used to identify a child’s additional needs taking into account the views of parent, child, professionals and other environmental factors.
Carer’s Allowance – a taxable benefit for someone over 16 who spends at least 35 hours per week caring for a person who is disabled and earns less than £100 per week. For further information visit www.direct.gov.uk
CAF – (Contact a Family), national charity providing information, advice and support to parents, carers and families of children with special needs. www.cafamily.org.uk
Carer’s Assessment – an evaluation of carer’s needs carried out by social services in order to decide what help is needed and available.
CAMHS – (Children and Adolescent Mental Health Service), mental health support for children, young people under 18 and their families. In West Sussex the service is provided by Sussex Partnership NHS Foundation Trust. www.sussexpartnership.nhs.uk
Choice Advice – support provided to parents who need help choosing and applying for a secondary school for their child. In West Sussex the service is provided by the Parent Partnership. For further information search for Choice Advice at www.wsgfl.westsussex.gov.uk
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Child Tax Credits – system of payments from the government to families responsible for at least one child. How much you will receive depends on a number of factors including how many children live with you, whether you work and for how many hours, how much you earn, if you pay for childcare and if your child is disabled. For further information visit www.hmrc.gov.uk/taxcredits
Cognitive Development – refers to the process by which a child learns to process information, learn language and skills in perception, problem solving, etc.
Children’s Community Nursing Team – trained nurses who provide care to children outside of hospital.
Community Equipment – term used to describe equipment to aid daily living including wheelchairs, hoists, lifts, beds, eating utensils, raised toilet seats, grab-rails, etc.
Children’s Development Centre multi-purpose clinic housing various children’s health professionals including physiotherapists, occupational therapists, speech & language therapists, etc. Circle of Support – informal group of people (usually family and friends) who meet together on a regular basis to help somebody accomplish their personal goals in life. Sometimes used in supporting people with learning disabilities. Clinical Child Psychologist – a healthcare professional who diagnoses, assesses and treats children with behavioural problems, depression, personality disorders, etc.
Community Dentist – dentists who work in the community visiting patients who cannot access their local practice and who require treatment on a referral basis.
Conductive Education – method of teaching children with motor disorders like cerebral palsy which focuses on the whole child and seeks to maximise their independence and mobility, increase their self esteem and social interaction. For further information visit www.conductive-ed.org.uk Congenital – relating to conditions that are present at birth. Connexions – careers advice service for young people aged 13-19. It also provides support up to the age of 25 to young people with learning disabilities, physical disabilities or both.
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Disability Jargon Buster For further information visit www.connexions-direct.com Continuing Care – fully funded health care provided in the community to an adult with a disability, injury or illness over an extended period of time. CT Scan – (Computerised Tomography), scan that uses X-Rays and a computer to provide detailed images of the inside of the body. Used in the diagnosis of many different health conditions including cancer and bone disease. DDA Code of Practice – a guide on how to prevent discrimination against disabled people in accessing services or premises. Development Delay – term which refers to a child not meeting milestones for their age range in one of the following: - personal and social skills, gross motor skills, fine motor skills and perception, speech and communications. Development Disorder – umbrella terms to describe a number of disorders that interrupt normal childhood development
DLA - (Disability Living Allowance), tax free benefit for disabled children and adults who need help with personal care and/or mobility. For further information visit www.direct.gov.uk Direct Payments – local authority funding for people who have been assessed as needing help from Social Services and who would like to organise and pay for their own care rather than receiving them direct from their local authority. For further information visit www.direct.gov.uk Disability Discrimination Act (2005) – legislation that improves the civil rights of disabled people in relation to education, employment, accessing goods and services and for disabled people who rent property and wish to make improvements to their home. Also requires all public bodies to actively promote equality of opportunity for disabled people. Disability Equality Duty – a legal requirement of all public bodies to promote equality of opportunity for disabled people. Also requires public bodies to issue a Disability Equality Scheme which sets out how disabled people have been involved in developing the scheme, what improvements will be made to policy and
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service delivery and how information will be collected to demonstrate how the public body in question has met its targets. Disabled Facilities Grant – local council grant towards the cost of adapting a home for someone who is disabled. Maximum grant available in England is £30,000. For further information contact your local council.
someone because of their links with someone else, for example, employment discrimination against someone with caring responsibilities. Protection against discrimination by association was included in the Equality Act 2010. Dysphagia – medical term referring to a difficulty with swallowing. Early Bird – training programme by the National Autistic Society designed to help parents of pre-school children with Autism better understand the condition and improve their child’s behaviour and communication. For further information visit www.nas.org.uk/earlybird
Disabled Students Allowance – additional financial help over and above the standard student financial package for disabled people who want to study in higher education. For further information visit www.direct.gov.uk Disagreement Arrangement – a requirement of local authorities to have an arrangement in place to resolve disputes between parents of children with special educational needs and their local authority or school. Must include an independent mediator.
Early Support – government programme providing information, guidance and resources to parents, families and professionals working with disabled children under 5. For further information visit www.earlysupport.org.uk
Disapplication – removal or lifting of any element of the National Curriculum for a child with special educational needs.
Early Years Action – programme of learning and activities for children at nursery or pre-school who have been identified as having special educational needs
Discrimination by Association – practice of discriminating against
Early Years Foundation Stage (EYFS) – government framework
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Disability Jargon Buster for the learning and development of children aged 0-5. All providers of education and care of young children must follow the requirements of the framework. Educational Psychologist - professional responsible for addressing problems encountered by children and young people at school including assessing them for statements of special educational needs, tackling social and behavioural problems, etc. Education Supervision Order – legal provision enabling the local education authority to put a child not receiving proper education under their supervision in order to ensure they receive sufficient full-time education and their parents, sufficient advice and support. Employment Support Allowance (ESA) – new form of government benefit that replaces Incapacity Benefit and Income Support for people claiming after the 27th October 2008. Includes an assessment carried out by a healthcare professional of a person’s capability for work. For further information visit www.direct.gov.uk Educational Welfare Officer – professional employed by local educa-
tion authorities who works on issues around school attendance. EDCM – (Every Disabled Child Matters), a campaign to raise the political profile of disabled children and their families. For further information visit www.edcm.org.uk Expert Patient Programme – NHS training for people living with longterm health problems designed to enable them to better self manage their health. Also includes training for parents and carers of children with long-term health needs. For further information visit www.expertpatients.co.uk Family Fund – government funded national charity providing grants to disabled children and families who are in receipt of one or more benefits, for example, child tax credit, income support, housing benefit, etc. For further information visit www.familyfund.org.uk Fine Motor Skills – use of smaller muscle groups and hand to eye co-ordination to carry out precise tasks like writing, picking up objects, fastening cloths, etc. FIRST Team – team based within West Sussex Early Childhood Serv-
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ice who offer training and advice to early years childcare providers and nurseries in including disabled children within their setting. For further information search for FIRST Team at www.wsgfl.westsussex.gov.uk
Health Visitors – qualified nurse who works with families of new born children. Homeopathy – alternative form of medicine where a patient is given highly diluted substances with the aim of ‘triggering the body’s natural system of healing’.
Gait – term to describe the way in which a person walks. Gaiters – type of splint used to straighten elbows or knees.
Hospice – providers of specialist care to children who have life limiting or life threatening illnesses.
Gastrostomy – an artificial surgical opening in the stomach to aid feeding and nutritional support.
Hypertonia – medical term to describe increased muscle tone. Hypotonia – medical term to describe decreased muscle tone.
Global Development Delay - term which refers to a child not reaching age appropriate milestones in most if not all of the following: - personal and social skills, gross motor skills, fine motor skills and perception, speech and communications.
Hypoxia – medical term to describe when a person is deprived of an adequate oxygen supply. Incapacity Benefit – government benefit for people who because of illness or disability cannot work. Only awarded to people who were claiming before October 2008. Has otherwise been replaced by Employment Support Allowance. For further information visit www.direct.gov.uk
Graduated Approach – model of approach to working with children with special educational needs in early years or school which emphasises gradually bringing in additional support and expertise to support a child’s learning and development. Gross Motor Skills – use of the large muscles in the body that enable standing, walking, lifting, sitting, etc.
Inclusion – commonly used term in education to describe the principal by which children with special educational needs attend school and
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Disability Jargon Buster participate in the curriculum alongside other pupils.
Kaye Walker – walking frame for children with mobility problems.
Inclusion Support Team – support schools of primary aged children in building their capacity for inclusion and raising attainment. Work with individual pupils, provide training and advice to teachers and support staff, raise awareness on specific issues, etc. For further information search for Inclusion Support Team at www.wsgfl.westsussex.gov.uk
Key Stages – the national curriculum is broken down into 4 phases known as key stages. They are based on age groups – Key Stage 1 (5-7), Key Stage 2 (7-11), Key Stage 3 (11-14), Key Stage 4 (14-16).
IEP – (Individual Educational Plan), document used to set short term targets and teaching strategies for an individual pupil different to those from the rest of the class. Sometimes called a Personal Learning Plan or Provision Map. IPSs – (Independent Parental Supporters), a volunteer who helps parents of children with special educational needs understand and work through the statement process and the broader SEN framework. IPSEA – (Independent Parental Special Educational Advice), national charity offering free legal information and advice to parents and families of children with special educational needs. For further information visit www.ipsea.org.uk
Key Worker – health or social care professional who acts as a point of contact and source of information and support to children, parents and families. Sometimes known as a Lead Professional. Learning Disability – general term to describe various intellectual and social impairments present from childhood that prevents or hinders a person understanding, learning or remembering new subjects or skills. Learning Support Assistant (LSA) – widely used term to describe a member of school staff who provides individual or small group support in the classroom to children with special educational needs. Mainstream School – ordinary school managed by the local education authority.
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Makaton – a system of communication that involves the combined use of manual signs and speech. For further information visit www.makaton.org Medical Model of Disability – a view of disability in which people are defined by their impairments. Emphasises the problem not the person and the need for medical intervention or correction of the problem. Often used in comparison with the social model of disability (see below). MLD – (Moderate Learning Difficulties), term used to describe people with an IQ score of 50-70. Characterised by the person having problems acquiring skills in literacy and language and often, associated problems with speech and communications, low self-esteem and poor social skills. MMR – (Measles, Mumps and Rubella), combined vaccination that protects against the above diseases. Has been fraudulently and incorrectly suggested as a cause of Autism. Modification – alteration to a programme of study or activity within the National Curriculum designed to give children better access to that element of the curriculum.
Motability - a scheme run by the national charity of the same name that enables disabled people to exchange the Higher Rate Mobility Component of their Disability Living Allowance to lease a new car, powered wheelchair or scooter. For further information visit www.motability.co.uk MRI Scan – (Magnetic Resonance Imaging) type of scan using powerful magnets and radio waves to produce detailed images of the inside of the body. Used to diagnose health conditions affecting bodily organs, tissue and bones. MSI – (Multi-Sensory Impairment) refers to people with a combination of visual and hearing difficulties. Sometimes known as ‘deafblind’. Music Therapy – form of therapy often used to help communicate and build relationships with people who are non-verbal or have problems with verbal communication, through the use of playing, singing and listening to music. For further information visit www.bsmt.org Muscle Tone – refers to the amount of tension or resistance to movement in a muscle and which enables movement, posture, etc.
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Disability Jargon Buster Multi-disciplinary – meeting of a group of professionals who assess, support and treat a patient. Named LEA Officer – professional from the local education authority who is a parent’s point of contact during the process of making a statutory assessment of a child’s special educational needs. NG Tube - (Nasogastric) plastic tube inserted in to the stomach via the nose to aid feeding. National Curriculum – covers the learning of all children aged 5-16 in state schools in England. Includes which subjects children should learn, the knowledge, skills and understanding children should have in each subject and targets to measure progress Needs Assessment – process carried out by social workers to identify both a child’s and their family’s needs and their eligibility for support from Social Services. Network 81 – national network of parents working towards inclusive education for children with special needs. For further information visit
Note in Lieu – document provided to parents of children who have been through the statementing process but NOT issued with a statement of special educational needs. The document should state what the child’s special educational needs are and make recommendations for appropriate provision. OCD – (Obsessive Compulsive Disorder), mental health condition characterised by obsessive thoughts that causes heightened anxiety and compulsive behaviour the person thinks necessary to relieve their obsession. For further information visit www.ocduk.org Occupational Therapist – (OT), healthcare professional who works with disabled people to improve their skills in carrying out activities to maximise independent living. Ophthalmologist –medically trained doctor with specialist skill in the diagnosis, treatment and prevention of diseases of the eye. OFSTED – (Office for Standards in Education, Children’s Services and Skills). Regulate and inspect childcare and educational services. Provide online reports on childcare providers and schools. For further information visit www.ofted.gov.uk
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Orthotist – healthcare professional who assesses individuals for and designs specialist braces, splints and footwear.
who have caring responsibilities above and beyond other parents. Parent Participation – the active involvement of parents in the planning of services families of disabled children receive.
Orthoptist – healthcare professional who investigates, diagnoses and treats sight related problems and abnormalities of eye movement and eye position.
PPS – (Parent Partnership Services), providers of information, advice and guidance to parents of children with special educational needs. The provision is a requirement of all local authorities but must be provided independently of their SEN team. For further information on the West Sussex Parent Partnership search for them at www.wsgfl.westsussex.gov.uk
Osteopathy – the manipulation, massage and treatment of problems with muscles, nerves and joints. Paediatrician – doctor who specialises in working with children. Palliative Care – provision of nursing, pain management, social, psychological and spiritual support to people who are dying.
PARMs - (Planning & Review Meetings), joint planning meetings involving schools, educational psychologists, advisory teachers and the inclusion support team. Designed to provide a forum for the co-ordination and development of special educational needs policy. For further information visit www.wsgfl.westsussex.gov.uk
PALS – (Patient Advice and Liaison Service) provides information on the NHS and investigates complaints made by patients. For further information visit www.pals.nhs.uk Paraplegia – impairment in motor or sensory functions in the lower half of the body. Parent Carer – term used to describe and recognise the dual roles of parents of children with special needs
Pastoral Care – provision by schools which focuses on the personal, social and emotional needs of pupils. Pastoral Support Plan – school strategy to help children improve
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Disability Jargon Buster their social, emotional and behavioural skills. Often used with children at risk of exclusion. PECS - (Picture Exchange Communication System) picture based communication system commonly used by pre-verbal or non-verbal children on the Autistic Spectrum. For further information visit www.pecs.org.uk Person Centred Plan – a process often used for people with learning disabilities in which they decide what they want to do with their life and those around them (friends, family and professionals) help devise a plan for the person to achieve their aims. Personal Budgets - money that comes from social services to meet a person’s social care needs. You will receive a Personal Budget if you have been assessed as having social care needs that your local authority will fund. Personalisation – the provision of tailored care and support to people based on their individual needs and the choices they make about how they want to live their lives. Play Therapy – the use of play to help children act out and understand difficult life experiences and feelings
in order to reduce anxiety, improve self esteem and better manage their emotions and behaviour. For further information visit www.playtherapy.org.uk Physiotherapist – healthcare professional who use manual therapy and exercise to treat people with physical problems caused by illness, accident or ageing. PMLD – (Profound & Multiple Learning Difficulties) – refers to people with more than one disability including a profound learning disability. Prognosis – medical term used to describe the likely progress and outcome of an illness, condition or disability. Provision Map – a brief document giving a view of how a school will support a child with additional needs. Also see IEP (Individual Education Plan). PRU – (Pupil Referral Unit), a specialist school run by local authorities which provides education for children who cannot attend a conventional school. Includes children with behavioural or medical problems, mothers and pregnant schoolgirls, children who are school phobic or who are awaiting a school place.
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Psychiatrist – medically qualified doctor who specialises in the diagnosis, treatment and prevention of mental health conditions. Quadraplegia – refers to paralysis of all four limbs and torso. Also known as Tetraplegia. Portage – a home-visiting educational service for pre-school children with special needs and their families. Owes its name to the town in Wisconsin, USA where it was first developed. To find your local portage search on www.wsgfl.westsussex.gov.uk Progressive – term used to refer to an illness or condition which generally gets worse over time. Re-consideration – the re-assessment of applications for Disability Living Allowance that were initially turned down. Over 50% of decisions are over-turned on re-consideration. Respite – a break from caring for someone with an illness or disability. Revision – a review of Disability Living Allowance applications where the person disagrees with the rate at which they have been assessed.
SALT – (Speech & Language Therapist) healthcare professional who assesses and treats people with speech, language and communication difficulties, plus individuals with eating and swallowing problems. Scoliosis – a sideways twisting and curvature of the spine that can also pull the rib-cage out of position. For further information visit www.sauk.org.uk School Action – term used to refer to a school’s provision of additional support to a child not progressing with the existing curriculum. School Action Plus – term used to refer to external support provided to support a child not benefiting from existing internal provision through School Action (see above). School for Parents – teaching programme in conductive education (see above) for both children with cerebral palsy and their parents. In West Sussex the School for Parents is at Ingfield Manor near Billingshurst and delivered by the Dame Vera Lynn Trust. For further information visit www.dvltrust.org.uk
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Disability Jargon Buster SEN - (Special Educational Needs), a legal definition, referring to children who have learning difficulties or disabilities that make it harder for them to learn or access education than most children of the same age. SENCO – (Special Educational Needs Co-ordinator), school member of staff responsible for the co-ordination of special educational needs provision. SEN Code of Practice – a guide to policies and procedures for local authorities and schools working with children with special educational needs. Covers issues like statements, annual reviews, inclusion, schools transition, etc. SENDIST – (Special Educational Needs and Disability Tribunal), an independent body that hears appeals against decisions made by local authorities on statutory assessments and statements. For further information visit www.sendist.gov.uk SEN Team – educational psychologists and caseworkers who carry out the statutory assessment of a child’s special educational needs. For further information visit www.wsgfl.westsussex.gov.uk
SEN Tribunal – (Special Educational Needs Tribunal) an independent panel which decides on appeals made by parents against local authority decisions on statutory assessments and statements. The decision of the panel is binding on both parents and the local authority. Sensory Integration – the process by which the brain interprets the five senses (vision, hearing, touch, smell and taste) and the sense of balance and of knowing one’s position in space and relation to others. Sensory Services Team – local authority support to children and adults with either or both hearing and visual impairments. To find the West Sussex sensory team search for them at www.westsussex.gov.uk Severely Sight Impaired - term used to describe blindness. SLD – (Severe Learning Difficulties), term to describe people with learning difficulties who have an IQ score of 20-35. Characterised by substantial difficulty in acquiring literacy and language skills and often, associated problems with mobility, co-ordination, communication, perception and acquiring self-help skills.
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Signalong – a system of communication which uses signs based on the British Sign Language and the simultaneous use of the spoken word. For further information visit www.signalong.org.uk
ticular type of learning difficulty like dyslexia present in children who are otherwise the same as their peers.
Sight Impaired – term used to describe partial blindness. Social Fund – government fund which provides interest-free crisis loans to people in a financial emergency which if not resolved, could cause serious damage or risk to them or their family’s health. For further information visit www.direct.gov.uk Social Model of Disability – view of disability which states that it is created by society as a result of physical and cultural barriers and attitudes which lead to discrimination and exclusion. Used in contrast to the medical model of disability. Spasticity – medical term for muscle stiffness. Special School – a school which specialises in educational provision for children with special educational needs. Specific Learning Difficulty – a general term used to describe a par-
Spider Therapy – form of treatment used by people with cerebral palsy that involves attaching a number of elastic cords to the person’s body enabling them to move independently but in a way that controls movement and strengthens parts of the body affected by their condition. Spinal Jacket – specially designed brace used to support and correct the spine. Sometimes known as a TLSO (Thoracic Lumbar Sacral Orthotic). Statement of Special Educational Needs – document written by local educational authorities which sets out a child’s special educational needs and how they should be helped, what type of school they should attend, what non-educational support they might need and how this will be met. Statutory Assessment - process by which local authorities carry out an assessment of a child’s special educational needs. A number of people participate in the process including parents, the child’s school or nursery, an educational psychologist,
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Disability Jargon Buster health care professionals and social services. At the end of the process the local authority will either issue a statement of special educational needs (see above) or explain why one is not being made and how the child’s needs will be met. Supercession – a review of Disability Living Allowance where the person’s circumstances have changed and they believe they need more help. Sure Start – government programme for pre-school children and their families including advice on childcare and development, play schemes, parenting classes, family out-reach and education. Also includes newly established children and family centres. To find your local children and family centre search on www.wsgfl.westsussex.gov.uk
Temporary Disapplication – removal of those parts of the National Curriculum where it is impossible or inappropriate for the child to participate. Transition Plan – document drawn up by disabled young people in year 9 (aged 13-14) with parents, teachers and other relevant professionals detailing what the child wants to achieve in education, employment, leisure, etc. as they move into adulthood. Trauma –a serious injury or shock to the body. Triad of Impairments – term that describes the impairment of social interaction, communication and imagination pervasive in all Autistic Spectrum Disorders.
Switch Access – technological device used to access computers for people with severe physical disabilities. The switch replaces the need for a mouse or keyboard.
Triage – process by which a patient’s treatment is prioritised based on the severity of their condition and the need for immediate medical attention.
TAC - (Team Around the Child) – team of professionals from various backgrounds and services working together to provide joined-up support for a child or young person.
Valuing People Now – three year government strategy to improve the lives of people with learning disabilities. The main focus of the strategy is that people with learning disabilities are people first and have the right to
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lead their lives like anyone else. For further information visit www.valuingpeoplenow.dh.gov.uk VOCA – (Voice Output Communication Aid), or Speech Generating Device, an electronic device which allows people who are unable to use natural speech to generate printed or spoken text. Work Capability Assessment – an assessment carried out by a healthcare professional of a person’s capability for work or ‘work related activity’. Can include a medical assessment. Used in the assessment of Employment Support Allowance. For further information visit www.direct.gov.uk Working Tax Credit – a system of payments from the government to people who work 16 hours or more per week and are paid for that work. For Further information visit www.hmrc.gov.uk/taxcredits
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Book designed to help parents find their way through the maze of bureaucracy, benefits and services that must be navigated in order to best...