Helpful organisations
The organisations listed below provide a wide variety of services, advice and information relevant to children with disabilities and their carers. Support groups for specific conditions appear on their respective pages in our Directory.
Our Helpline, Tel: 0808 808 3555, can also provide further information.
Aids & Equipment
Disabled Drivers Association
Web: http://www.dda.org.uk
Provides information and practical help on mobility issues for disabled people.
Disabled Living Foundation
Web: http://www.dlf.org.uk
Comprehensive information service on aids and equipment for people with disabilities.
MedicAlert
Web: http://www.medicalert.org.uk
The Emergency Identification System for people with hidden medical conditions.
Bereavement
Child Bereavement Trust
Web: http://www.childbereavement.org.uk
Child Death Helpline
Web: http://www.childdeathhelpline.org.uk
A partnership between professionals and trained volunteers, virtually all of whom are bereaved parents, who offer befriending and emotional support to others who have suffered a similar experience.
Compassionate Friends
Web: http://tcf.org.uk
Support for bereaved parents.
Cruse Bereavement Care
Web: http://www.crusebereavementcare.org.uk
Web: http://www.rd4u.org.uk (Young Person's web site) Bereavement help and information.
Carers
Carers UK
Web: http://www.carersonline.org.uk
Advice, information and campaigning for carers.
Carers Scotland
Web: http://www.carerscotland.org
Carers Wales
Web: http://www.carerswales.org
Crossroads Care
Web: http://www.crossroads.org.uk
Co-ordinates schemes for care of disabled people in their own homes.
Crossroads Scotland
Web: http://www.crossroads-scotland.co.uk
Care Attendant Schemes providing short breaks for carers across Scotland.
Princess Royal Trust for Carers
Web: http://www.carers.org
Provides access to support, advice and services through its network of carers' centres.
Funding
Family Fund
Web: http://www.familyfund.org.uk
A national charity offering financial assistance and information to families caring for a child/children with special needs and disabilities under the age of 16 years.
Family Fund Extra
Web: http://www.familyfundextra.org.uk
Website run by the Family Fund which allows families on low incomes to join for free a shopping club which offers discounts with online retailers.
React
Web: http://www.reactcharity.org
Grants for the special aids/equipment needs of children with life-threatening conditions.
General support organisations
Barnardo's
Web: http://www.barnardos.org.uk
Barnardo's helps the most vulnerable children and young people transform their lives and fulfil their potential.
Family Rights Group
Tel: 0800 731 1696 (Mon–Fri, 10am–3.30pm)
e-mail: advice@frg.org.uk
Web: http://www.frg.org.uk
Offer advice for parents and other family members whole children are involved with, or need, social care services.
Newlife Foundation for Disabled Children
Web: http://www.newlifecharity.co.uk
Provides support service for families, funds medical research, creates awareness and encourages prevention of birth defects.
SSAFA
Web: http://www.ssafa.org.uk
National charity helping serving and ex-service men, women and their families, including widows and widowers in need.
The Cedar Foundation
Web: http://www.cedar-foundation.org
Northern Ireland charity supporting people with disabilities to be fully included in their communities.
Government
Directgov
Web: http://www.direct.gov.uk/carers (information for carers)
Web: http://www.direct.gov.uk/disability (information for disabled people)
Directgov provides a single point of online access to government carers and disability services and information - including financial support, rights, independent living and much more.
ParentsCentre
Web: http://www.parentscentre.gov.uk
Information and support for parents on how to help with your child's learning, including advice on choosing a school and finding childcare.
Relationships
The Couple Connection
Web: http://thecoupleconnection.net/
Provides parents with online information, forums, personal spaces and 'couple spaces' aimed at enabling couples to improve their relationship with their partner. Includes specific information for fathers and parents of children with disabilities.
Short term breaks
Provision of Short Term Breaks varies widely. Information can be obtained from local social services and voluntary organisations such as:
Contact a Family national and regional offices have details of information services and providers in their area.
Transition
Progress Magazine
Web: http://www.progressmagazine.co.uk/
Progress is a transition guide for 13 to 25 year olds with special needs with information for young adults, parents, carers and professionals.
Umbrella Organisations
ACT - Association for Children with life-threatening or terminal conditions and their families
Web: http://www.act.org.uk
Web: http://www.act4families.org.uk
Campaigns for children's palliative care services, promotes models of good care and provides information for families and professional workers.
Brain and Spine Foundation
Web: http://www.brainandspine.org.uk
Web: http://www.headstrongkids.org.uk (children and young people site)
Provides an information service for patients, carers and health professionals; an education programme for GPs and medical undergraduates; and workbooks for schools and colleges as well as supporting a wide range of neuroscience research projects.
Council for Disabled Children
Web: http://www.ncb.org.uk/cdc
Promotes collaborative work between different organisations providing services and support for children and young people with disabilities and special educational needs.
Genetic Interest Group
Web: http://www.gig.org.uk
Forum of voluntary organisations concerned with policy for genetic disorders.
Long-Term Medical Conditions Alliance
Web: http://www.lmca.org.uk
The umbrella body for national voluntary organisations working to meet the needs of people with long-term health conditions.
National Parent Partnership Network (NPPN)
Web: http://www.parentpartnership.org.uk
Supports the work of the parent partnership services which provide information and advice to parents, particularly during statutory assessment and the issuing of a statement.
Patients Forum
Web: http://www.thepatientsforum.org.uk
A network of national and regional organisations representing the healthcare interests of patients, their families and carers.
Transplant Support Network
Web: http://www.transplantsupportnetwork.org.uk
The Network provides support and information for all those who have had a transplant.
Other
Care2assist
Web: http://www.care2assist.com
e-mail: info@care2assist.com
A service aimed at finding home help or au-pairs for families with disabled children.
Disabled Holiday Info
Web: http://www.disabledholidayinfo.org.uk
Information about holidays for people with disabilities including wheelchair accessible visitor attractions, activities and accommodation at selected sites around the UK
Cafcass (Children and Family Court Advisory Support Service)
Web: http://www.cafcass.gov.uk
Cafcass looks after the interests of children involved in family proceedings, with the aim to put children first in family courts.
Turn2us
Web: http://www.turn2us.org.uk
Charity aimed at helping people to access money available to them – through benefits, grants and other financial help.
The Contact a Family Directory also contains the following pages of useful addresses:
If you would like to submit a site for inclusion in this listing please refer to our guidance on linking from Contact a Family's website
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