E General Organisations for families of ill or disabled children (UK wide)

Abilitynet offers advice and information about computers and disability.

Action for Sick Children aims to raise standards of health care for all children whether at home or in hospital. Publishes information and advice for parents including ‘Coming into hospital’, ‘Children and pain’

Biking and Disability operate a national database of technical information and suppliers of bicycles to meet the needs of disabled people.

Carers UK (formally Carers National Association) provides information, support and advice for carers. Campaigns for greater awareness in government and society of the needs of carers and for action to be taken to support them. Has active network of local groups, a few of whom include special siblings groups and young carers groups. Produces range of booklets on benefits, combining caring and work.

College of Occupational Therapists is the professional body of the British Association of occupational Therapists. They will be able to locate relevant specialist groups of O.T, and local practitioners and those in private practise.

Contact a Family is a well established charitable organisation that produces up to date information about important issues for families of children with different special needs. Provides advice, information and has a directory of local and national support groups. Links up parents of children with very are conditions. Very good quarterly magazine ‘Share an Idea’. Factsheets include ‘Transition’, ‘A guide for Students and Professional workers’, ‘Siblings’, ‘Grandparents’ and many others.

Crossroads Caring for Carers

Disabled Person’s Railcard subsidised rail transport and information about how to arrange for assistance or ramps on/off trains. Contact local stations for application form from or by writing to:-

Ehlers-Danlos Syndrome Support Group offers an excellent and informative website and network of local support.

National Council for One Parent Families offers information and support to single parents about a wide variety of issues.

Family Fund Trust aims to ease the stress on families who care for severely disabled children under 16 including providing information and means tested grants. Publishes good publications ‘Adaptations to Housing’, ‘Bedding and Clothing’, ‘Holidays’ and book ‘Taking Care’. ‘All together better’ is a newly published guide for families of a disabled child with complex health care needs.

Parent helpline.

Future Cycles specialise in bikes and tricycles for people with disabilities. Also have electrically assisted bikes.

General Medical Council

Holiday Care

MERU (Medical Engineering Resource Unit) research design and manufacture (free of charge) aids, devices and equipment for individual disabled children, that are not available commercially. Also provide a free advisory service for carers and parents.

Motability is non-profit organisation and runs a scheme to enable those in receipt (or their parents) of the higher rate of Mobility Component of Disability Living Allowance to lease or buy a car. Most new car dealers now have some experience of this scheme. Also operate a hire purchase scheme for electric wheelchairs. Child must be over five years old.

National Children’s Bureau/Council for Disabled Children publishes reports and campaigns to improve services for disabled children and their families. Recent report ‘Growing up: a guide to some information sources for young Disabled People and their Families’

Pre-school Learning Alliance supports the establishment and running of community run pre-schools including Opportunity Groups. Provides information, publications and training on special needs for helpers in pre-schools and gives grants to fund one-to-one helpers for children with special needs.

Relate is an organisation that deploys trained counsellors to help and support couples communicate and overcome difficulties relating with each other.

Riding for the Disabled Association oversees the Riding for the Disabled Groups around the country. Puts parents in touch with local branches.

Support for families of services personnel

SSAFA Forces Help

Tripscope is an organisation specialising in information and advice for people with mobility problems who need to use public transport, or wish to travel abroad.

Vehicle tax exemption; you may be eligible to claim for exemption of annual vehicle tax if the child is over 5 years, receives higher rate of the Mobility section of Disability Living Allowance, and you jointly register the ownership of the vehicle in the child and parents’ name. This could be a saving of at least £150 annually (2002). You have to get the certificate stamped in the local Transport Department each year.

Whizz-kidz offers specialist advice about wheelchairs for children and young people with mobility problems including manufacturers, sports events and support groups, some financial aid may be available towards purchase of particular items.