Family Information Service

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1 Support Groups The local support groups section has information written by each provider or taken directly from the individual provider websites. To make sure the information is accurate we would always recommend contacting the provider directly before attending a group. You are not alone. There are local networks to help parents with disabled children to get in touch with each other and meet up. Your GP or hospital specialist may be the first person you meet who can refer you on to places where you can get more help. Or you can contact the Family Information Service who should be able to find you a local support group that will be suitable for your needs. Find information on short breaks in your area, child care and support for your family Buckinghamshire Family Information Service / 161

2 Local Support Groups based in Bucks: AFASIC Emma is a local contact for parents of children with speech and language and/or communication difficulties. She doesn t run a support group but can offer advice and signpost you to support groups which could be useful for your family. For more information contact Emma Phipps on Website: Previous Buckinghamshire Integrated Sensory Service (BISS) BISS are working in Partnership with Young Deaf Activities, and Sense to provide support for visually impaired, deaf, hard of hearing adults and children. This service is provided by Action on Hearing Loss for Buckinghamshire County Council. Our support to children includes: Registration of hearing; sight and dual sensory loss. Specialist assessments for Deafblind children Provision of intervener/communicator guide support for Deafblind children and young people. Equipment to assist sensory impaired children and young people with daily living. Advice and information on hearing sight and dual loss Mobility and orientation tuition for sight impaired children and young people. Home communication support for Deaf children and their families. 162 /

3 To contact us: BISS First Floor, Riverside House, 44 Wedgewood Street, Fairford Leys, Aylesbury, Bucks. HP19 7HL Phone: Fax: Text/Minicom: Mobile: / 163

4 BucksVision BucksVision is a registered charity which provides support and services to anyone with serious sight loss throughout Buckinghamshire. BucksVision s dedicated team of staff and volunteers is key to the success of our service provision. Our staff work from the Resource Centre in Aylesbury and provide invaluable support to over 3000 visually impaired members. BucksVision also has over 400 volunteers and our Milton Keynes Resource Centre is manned by volunteers. You can contact BucksVision by telephone, in writing to the Aylesbury Resource Centre or via Aylesbury Resource and Training Centre 143 Meadowcroft, Aylesbury, Buckinghamshire, HP19 9HH, Next Opening Hours: Monday - Thursday: 9:00 am pm Friday: 9:00 am - 4:00 pm Contact Details: Tel: Fax: reception@bucksvision.co.uk /

5 Calibre Audio Library Our audio books bring the pleasure of reading to people who have sight problems, dyslexia or physical disabilities. The main way of providing audio books is in digital format. Our digital books are in MP3 format and they are available on MP3 disks, USB memory sticks and via streaming. We offer a wide choice of books: fiction and nonfiction, for both children and adults. The service is easy to use and is absolutely free. or call Previous Carers Bucks Carers Bucks is an independent charity which supports unpaid family carers in Buckinghamshire. We support carers of all ages and in different caring roles, including parents of children with a physical or learning disability, carers from the black, Asian and minority ethnic community, carers of people with mental illness and Young Carers. Registering with Carers Bucks means that you can access our information and advice service, attend our training sessions, talks and social events and join a local support group. Carers can also join take advantage of our In Case of Emergency (ICE) scheme which gives peace of mind if you are suddenly unable to care because of an accident or illness. Online support is also available through our online forum. We offer parents of children with additional needs advice and information on a range of issues including benefits, care services, short breaks, holiday activities and grants. We also run information events and offer talks and training on topics such as managing challenging behaviour, wills and trusts and parents rights under community care law. If we are not able to help we can refer parents to other relevant organisations. / 165

6 I really appreciate the fact that you are there for us because quite honestly when I am struggling I never seem to think logically and knowing I can ring you is great. Thank you so much. Our Young Carer s team supports children and young people aged between 6 and 18 years who care for someone in their family home who have a mental or physical illness, disability or substance dependency. The support offered to Young Carers varies from 1 to 1 work, clubs and activities and specialist group work. We also organise family events and residential trips when funding allows. All Young Carers are assessed for the level of support they will be offered. If you would like to find out more about our services please do not hesitate to contact us. 166 /

7 Contact Us All carers contacting Carers Bucks will be able to speak to an experienced Carer Support Worker in confidence, either over the telephone, via or by visiting our office (please ring us first to make an appointment). Our offices are open from: 9am 5pm Monday Thursdays; 9am 4.30pm Fridays Aylesbury Office, Ardenham Court, Oxford Road Aylesbury HP19 8HT. Tel: Website: Next / 167

8 Child Brain Injury Trust Supports children and young people with acquired brain injury (an injury or accident that has happened to the brain after birth), their families and the professionals involved with them. They can provide support in three main ways: training and information, raising awareness and child and family support. For more information on the child and family support available in Bucks call: or visit their website: Previous Clearly Speaking Specialist Children and Family Support Services We provide a wide range of specialist support services and intervention for all families in and around Buckinghamshire who have family members aged birth to 25 years of age, with any level of Special Needs and/or Disability. Our key consultants specialise in working with children and young people who have, what are called, hidden and more complex special needs or disabilities, including High Functioning Autism, Tourette s Syndrome, Bi- Polar Disorder, ADHD, Social Communication Difficulties and associated learning difficulties including Dyslexia, Dyspraxia and specific learning difficulties. The majority of the families who come to Clearly Speaking have Autism or Asperger s Syndrome as part of their diagnosis. We are able to provide a detailed assessment for children and young people, we work with all the doctors and professionals who may be involved with the family to make sure children and young people are able to get the best support and services to meet all of their needs. Following our base-line assessment we are able to write to practitioners and request referrals for children and young people and support meetings with those working with the family to ensure the most appropriate care and intervention is in place and benefiting those members of the family who really need help. 166 /

9 As part of our specialist role, we go into schools to check the support and programmes in place to help pupils are the best for them and we attend meetings with parents to help to them to feel like they are being listened to. We can advise families about what other help and support t they should be getting and we are also able to offer more specialist courses and activities suitable to both children and young people, and their families and we will take the lead in securing them as quickly as possible. The intervention we are able to provide includes; assessments, referrals, Cognitive Behavioural Therapy, Accredited Learning Courses including National Arts Awards and Duke of Edinburgh Awards, specialist weekly support individually for children, young people and parents separately or small group support, family intervention to improve family life, help with social communication skills and friendships, extended work experience and transition support at all phases of transition as required. We are committed to adapting services to suit the individual needs of clients as much as is possible and to provide a holistic service. Next The key aim of Clearly Speaking is to ensure that all children and young people have the opportunity to achieve their true potential, whatever this may be, irrespective of ability or disability. Contact us at our Children and Family Centre in Buckingham, Bucks. Tel: or check out our website or the team on info@clearlyspeaking.org.uk / 167

10 Contact a Family (see Advice Agencies) Connexions Buckinghamshire If you are aged (and up to 25 years if you have a learning difficulty and/or disability) Connexions provides free information, confidential advice and support on: Careers and work Learning Housing Relationships Health Drugs and alcohol Free time Your rights Money Training and apprenticeships Counselling Volunteering Or anything else to help you make the best decisions and choices in life Previous The Connexions service is available through Connexions Personal Advisers who are based in high street centres. If you are still in learning you may be able to talk to a Connexions Personal Adviser in school, college or training provider. Aylesbury: Temple Street, Aylesbury Buckingham: Youth Centre, London Road, Buckingham (par t-time) Chesham: c/o Way-in Centre, Sills Yard, Chesham (par t-time) High Wycombe: Thame House, Castle Street, High Wycombe You can just drop in or if you would prefer to make an appointment please call or for more information visit /

11 The National Autistic Society (NAS) is a National Charity set up to champion the rights and interests of all people with autism (including Asperger s Syndrome) and aims to provide individuals with autism, and their families with help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives. Local Branches of the NAS NAS Branches are formed by volunteers in their local area for mutual support. They provide a range of activities which may also include services such as information and advice, fundraising activities for existing or future projects, the running of workshops and seminars. Aylesbury Branch The Aylesbury Vale Branch was formed in May 2009.The majority of the Committee Members are either parents of children on the Autistic Spectrum, or are themselves on the spectrum. We hold regular daytime Coffee Mornings, which are primarily based at the Healthy Living Centre in Aylesbury. Children are always welcome at our coffee mornings, and at some venues crèche facilities may be available. At some of the coffee mornings, we have guest speakers to give information about different services, play schemes, and other support groups which are available. We also send out regular newsletters giving information of forthcoming local events, workshops and meetings. If you have any information you feel would be of interest to others, then we will be happy to include details in our newsletters. We are happy to try and answer your questions, but Members of the Committee are not trained Counsellors and whilst we are happy to share our own personal knowledge and information, our views may not necessarily be endorsed by the National Autistic Society. If we do not know the answer to your query, we would be happy to research the question and learn together. For more information or to be added to our mailing list, please contact by telephone on , aylesburyvale@nas.org.uk or website: Next / 169

12 South Bucks Branch We are a support group offering advice and information for local parents/carers of children, young people and adults on the autistic spectrum. We also hold regular family events such as swimming, bowling, softplay evenings as well as other fun family activities. In addition to these activities we run: an after-school club Rainbow Club (see Short Breaks section). a social group for young people/adults post 16 with ASD The Group with no name! (see Short Breaks section). For more information please visit our website or southbucks@nas.org.uk or phone: Previous Milton Keynes Branch There is also a NAS branch in Milton Keynes. For more information NASMiltonKeynesBranch@nas.org.uk. The main NAS operates various helplines, details of which are set out below. Their website is also a wealth of information and can be found at The Autism Helpline (open Monday-Friday 10am 4pm excl. bank holidays) provides impartial and confidential information, advice and support to people with autism (including Aspergers syndrome), their families, professionals, researchers and students. Helpline advisers are able to talk about autism and related issues. The Helpline will also take details of any welfare rights or community care enquiries and arrange a telephone appointment for you with the Welfare Rights Co-ordinator or Community Care Case Worker who will call you back at the agreed time and discuss your enquiry in detail. 170 /

13 The Parent to Parent Line ( ) is a free, confidential telephone support service offered by trained parent volunteers who are all parents themselves of a child or adult with autism. They can give other parents the opportunity to talk through problems and feelings, suggest helpful strategies, or provide a non-judgmental listening ear. The Education Rights Service ( ) provides accurate information, support and advice on educational provision and entitlements to help guide parents through education law and what can often be a complex and difficult process. Please view the website for the NAS: for further details of services offered by them. G.R.A.S.P.S. (Buckinghamshire UK) Greater Resources for Aspergers Supporting Parents and Siblings GRASPS is a support group, formed in the Spring of 2013 by two Mothers to ASD sons. The group s intention is to welcome those parents and families who are affected daily by Autistic Spectrum Disorder to join a positive forum for information exchange and mutual support. There are regular coffee mornings in Aylesbury and North Bucks, with the addition of planned family days and events; throughout the calendar year. GRASPS intends to reach out to all family members, as the family unit has to learn to function and cope with the additional challenges and difficulties that ASD contributes to the family dynamic. contactgrasp@gmail.com Tel: or / 171

14 Parent Forums run by Parent Participation Workers The role of Parent Participation Worker is to ensure parents and carers of children with special needs and/or disabilities are able to have their say on local services and provision bringing ideas and suggestions together of ways to improve the care, education, health and social situation for disabled young people. We offer opportunities for parents to meet with the council and health professionals. This enables parents to be involved in influencing change in services across the county. We help facilitate regional meetings around the county, as well as opportunities for parents and carers to be involved in consultations, tendering projects, representatives on council groups, participation days and training events. We want to hear from you if you want to get involved and have your say then do get in touch contact details are below. Lucy Falconer Previous 172 /

15 FACT (Families and Carers Together) Bucks Participation group offering support and advice: FACT Bucks is the new name for the Parent Consultative Group. This long-standing, influential group of parent representatives meets with council, health, education and social care professionals regularly to raise the issues and concerns from families of children with special needs and/ or disabilities. FACT Bucks is independent and the parents who make it up represent various support networks, local organisations and regional groups of parents. If you belong to any support group, find out if they have a representative so you can ensure they speak up for you! If you don t have a representative, contact FACT Bucks to get one on board. FACT Bucks is keen to represent all parents. If you have any points to raise, issues or concerns with any area of your child s development, education or care then get in touch, and the FACT Bucks reps will consider adding it to the agenda for the next meeting. Tel: info@factbucks.org.uk Website: Next / 173

16 South Bucks Down s Syndrome Group Families who have a member with Down s syndrome and adults with Down s syndrome are welcome to join this local group which aims to provide friendship, support and activities at all stages of life babies, preschoolers, primary school-age, teenagers and adults. (See Short Breaks section of directory for activities organised by South Bucks Down s Syndrome Group) To find out more about our group, its activities and the people to contact, visit our website: or contact: Judy Pantridge (Chair) chair@sbdsg.org.uk Previous North Bucks Down s Syndrome Group (also known as the Ducks Downs) Our group was established in 2008 when a number of parents of children with Down s Syndrome recognised a growing need for help and support. We provide a wide range of groups and activities including monthly evening meetings for parents, an afternoon coffee and toddler session, a music group, and horse riding at a local stable. For more information please contact Alison Coote on or alison.coote1@gmail.com SPACE Support Chesham is a parent-led group that meets monthly to chat, listen, laugh or cry as we support each other in caring for one another and for any child that has behavioural difficulties. They are based in South Bucks. Website: For information and parent support call our answerphone helpline or us at spacesupport@ntlworld.com 174 /

17 Young Deaf Activities We provide activities in which profoundly deaf children and young people who communicate by Sign Language can meet together along with their hearing siblings. We also give support to their families by offering sign language tuition and by offering respite. We currently run a Youth Club twice a month for the 5-18 years age group during term time and a monthly meeting for those aged In addition we have a monthly coffee morning and playgroup for the underfive s and their parents/carers. During the Easter and summer holidays we organise outings and a playgroup and in the Christmas holiday we organise a par ty and outing to the pantomime. We also offer signing tuition to families where a tutor goes into the family home and works with them along with a few group sessions for those who want it. If a parent or carer needs respite, particularly during the holidays, we also can offer support. We inform our members through our magazine Newsflash which goes out three times a year and through our website Contact details are: Mary Fallon Youth Activities Manager mobile text only: mary@yda.org.uk Next Jade McNeil Home Communications & Projects Manager SMS/Voice mobile: jade@yda.org.uk Alison Stacey Fund Raiser alison@yda.org.uk / 175

18 Previous Oxfordshire Deaf Children s Society (membership is open to Bucks families who use Oxfordshire facilities) The Oxfordshire Deaf Children s Society (ODCS) is affiliated to the National Deaf Children s Society (NDCS). ODCS aims to support hearing-impaired children and their families, whilst recognising that each child and each family has different needs. ODCS provides local opportunities for families to meet and help each other. It can be a shock to parents when they are told their child has a hearing loss. Other parents who have hearing-impaired children can help with questions or discuss worries about hospital, education or just dayto-day living. As well as being a source of mutual support, ODCS is in contact with professionals in both the health and education services. NDCS can also supply information and leaflets on various aspects of childhood deafness, both medical and nonmedical such as applying for Disability Living Allowance. For more information about ODCS please contact through their website: or call their message line on Next 176 /

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