Support Groups                                                    

If you would like me to add your organisation to this list, contact me. I would also be delighted to add links to your site. If you don't have a web site, I can add a page about your organisation to this site. Just email me some information and photographs.

If you know that any of the information on this list is out of date, then please contact us.

Bristol Area Downs Syndrome Support That's us!

Downs Syndrome Association Langdon Down Centre
2a Langdon Park
Teddington
TW11 9PS

Tel: 0845 230 0372
Fax: 0845 230 0373
Email: info@downs-syndrome.org.uk

Website www.downs-syndrome.org.uk

Information on all aspects of Downs Syndrome

Children and Young People Information Services (CYPIS) or

Familiy Information Services

Bristol

Bath

South Gloucestershire

The Family Information Services (CYPIS) are regionally based and provides free impartial information and guidance on a full range of childcare and children's services and resources across our area. The service is available to :

  • Parents and carers of children
  • Providers of childcare services
  • People wishing to set up new childcare provision
  • People wishing to become registered childminders
  • Employers and training providers
Black Carers Project
Kuumba Project .
20-22 Hepburn Road
St Pauls
Bristol BS2 8UD
0117 9144491

The Black Carers Project offers support to black and other ethnic minority carers in Bristol in many ways, these include:          

Information , Training Service , Development Service, Support Group , Young Black Carers - They produce a magazine twice a year called 'Embrace' which is sent out to carers as an information source on issues such as carers legislation, health issues, etc.

Contact a Family
Local information

info@cafamily.org.uk
National Web Site: http://www.cafamily.org.uk

Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability.

Contact a Family's vision is that all families with disabled children are empowered to live the lives they choose to live, and achieve their full potential, for themselves, for the communities they live in and for society.

Contact a Family's mission and purpose is to remove the barriers imposed by society which prevent families with disabled children achieving their full potential, and to empower these families to live the lives they want to lead

Council for Disabled Children
C/o National Children's Bureau
8 Wakley Street
London
0171 843 6000
 

The Downs Heart Group

PO Box 2460
Dunstable
LU6 2ZT

Tel : 0845 166 8061
Fax : 01525 221553
Email : info@dhg.org.uk
Website : www.dhg.org.uk

The Down's Heart Group is a UK charity which offers support and information to families who have a member with Down's Syndrome and congenital heart defects.Everyone involved with the Group is themselves a parent (if not natural, then foster or adoptive), or in a few cases a grandparent. We have all found it helpful to be in contact with other families, perhaps it would help you too.

 

 

Disability Alliance
1st Floor East
Universal House
88-94 Wentworth Street
London E1 7SA
0171 247 8776

Disability Alliance is a national registered charity with the principal aim of relieving the poverty and improving the living standards of disabled people. Our eventual aim is to break the link between poverty and disability.

We provide information on social security benefits and tax credits to disabled people, their families, carers and professional advisers; undertake research into the needs of disabled people, with particular emphasis on income needs and seek to promote a wider understanding of the views and circumstances of all disabled people. We are also a campaigning organisation.

Disability Rights handbook

We are best known as the authors of the Disability Rights Handbook , an annual publication with a print-run of 26,000, but also have a range of other guides and other information on our popular website.

The Disability Rights Handbook provides clear and concise information on the welfare benefits and tax credits systems, as well as other areas such as social and residential care and a range of other issues relevant to disabled people and their families. We feel this makes us particularly well-placed to comment on the complexities of the UK benefit system.

Families in Touch (Bristol) (Affiliated to CAF),

Beachley Walk Centre,

Beachley Walk,

Old Barrow Hill,

Shirehampton,

Bristol,

BS11 9PU

Tel: 0117 982 0584

Families in Touch work with families from the Bristol area, who have children with special needs and disabilities, either physical, emotional, social or behavioural. Families with a disabled child (or children) often feel isolated, the aim of Families in Touch is to help relieve the stress and isolation. There are enormous benefits to be derived through the informal contact of other people, who are either in the same situation or experiencing similar problems, rather than meeting them through statutory avenues for the social, medical or educational needs of their disabled child or children. See factsheet
Family Fund
PO Box 50
York
YO1 2ZX
0904 621115

The Family Fund helps families with severely disabled children to have choices and the opportunity to enjoy ordinary life.
We give grants for things that make life easier and more enjoyable for the disabled child and their family, such as washing machines, driving lessons, hospital visiting costs, computers and holidays.

Genetic Counselling
(referral by your GP)
Advice on genetics / help when considering having another child

TummyTroubleTummy Trouble

The Group offers support to the parents of children with gut motility disorders – a range of conditions that result in disruption to the regular movements of the digestive tract. For example: .

•Hirschsprungs Disease
•Intestinal Neuronal Dysplasia
•Hollow Visceral Myopathy
•Gastro-Oesphageal Reflux

Khass Asian Opportunity Group
St Werburghs
Community Centre
Horley Road
Bristol BS2 9TJ
0117 955 4070
Family support to Asian families with child with special needs Information for parents Workers include Urdu, Punjabi, Hindi and English speakers
Mencap
123 Golden Lane
London
0171 454 0454
 
Musicspace
Southville Centre
Beauley Road
Southville
Bristol
0117 9531731

Bristol MusicSpace provides a community-based music therapy service for children and adults in Bristol and the surrounding area.

Our team of state-registered music therapists is currently working with around 400 people each week at our well-equipped centre in Bristol and at our bases in Bath and Gloucester. We also provide an outreach service in a wide range of other settings from early years centres to residential homes.

Phoenix NHS Trust
Upper Belgrave Road
Clifton, Bristol
0117 9731127
Services for people with learning difficulties

Portage Service
Elmfield House
Greystoke Avenue
Westbury-on-Trym, Bristol
0117 9508955

Also available in Bath and South Glos

Portage is a home visiting educational service for pre school children with additional support needs and their families. It is based on the common sense principle that parents are the key figures in the care and development of their children.

Portage assesses the needs of young children with learning difficulties and then, in partnership with parents, builds on the abilities the child already has to stimulate the development of new skills. Portage offers a carefully structured yet flexible system to help parents become effective teachers of their own children.

You can refer yourself for Portage.

Portsmouth Downs Syndrome Trust
Sarah Duffen Centre Advice,
University of
Portsmouth

http://www.downsnet.org

Information on all aspects of development and education, specifically speech development
Supportive Parents for Special Children
3rd Floor Royal Oak House Royal Oak Avenue Bristol BS1 4GB
Tel 0117 9897725(helpline)
0017 9897724 (admin/fax)
Invaluable support if you are moving your child into the Education System. SPSC will help you find your way through the maze of Statements, SENs, LEAs, SENCOs, IEP, IPPs......etc!
Woodside Centre
Woodside Road
Kingswood
Bristol
For young children who have a sensory impairment - (eyesight/hearing)

 

 


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