Medical Background

Cerebral Palsy

Cerebral palsy is not one disease or illness: the term covers a range of movement problems. Sometimes a cause can be found: usually cerebral palsy is due to underdevelopment of a particular part of the brain, either before or after birth. Occasionally it may be due to a genetic problem, in which case other members of the family may want to go with you for genetic counselling - talk to your doctor about this. Sometimes the cause of the cerebral palsy is not identifiable.

The three main types of cerebral palsy are:

• Spastic cerebral palsy, where muscles are stiff and weak
• Athetoid cerebral palsy, where control of movement may be a problem
• Ataxic cerebral palsy, which causes difficulties with balance and co-ordination

Some people are very mildly affected by cerebral palsy, whilst others experience serious problems because of it. Cerebral palsy can be associated with other problems, if other parts of the brain are also affected (for example, deafness, blindness or epilepsy). It may be associated with learning difficulties, but most people with cerebral palsy are of average or above-average intelligence.

Although there is no cure for cerebral palsy, getting the right treatment and support as early as possible will help to minimise the problems it causes.

Spina Bifida

This occurs when part of the spinal column (the backbone, which surrounds the spinal cord) fails to develop completely, leading to damage to the cord. It is thought that 1 in 10 of the population have spina bifida, but most people have such a mild form that they don't ever know that they have it. For some people, however, the damage to the spinal cord causes them serious problems - for example, they may not be able to control their bladder or their legs. The effects depend on exactly which part of the spinal cord is affected, as different parts of the cord control different parts of the body. Some people with spina bifida also suffer from hydrocephalus ("water on the brain"), which may cause them further problems.

As yet, the exact cause of spina bifida is not known, but there seems to be a genetic link in some cases. Taking folic acid supplements, from 1 month before conception, up to 3 months into the pregnancy, does cut down on the risk of the baby being born with spina bifida. However you are affected, we may be able to provide some helpful information for you, so read on... (There is a list of useful addresses at the end.)

First port of call / Medical treatment

Cerebral palsy, hydrocephalus and spina bifida are often first noticed by the midwife or health visitor. If you are worried about your child, speak to either of them, or your GP.

Registration

Some local authorities hold registers of disabled children in their area. This means that they can keep you informed about relevant services, help groups etc in your area. Contact your local Social Services Department for details.

Useful organisations

Association for Spina Bifida and Hydrocephalus: advice and information for those with spina bifida and hydrocephalus, and their families. Covers various issues including education, continence management and mobilty. Apply for assessment for community care and to receive the Association's newsletters.

Scope: information and support for those with cerebral palsy and their families. Free helpline, with interpreters for many languages. Phone them for access to fieldworkers, local support groups and professional services. Wide range of information leaflets available via helpline.

Benefits and Allowances

Some benefits require you to be registered; others are only available to people on low incomes, or for certain age groups. You may be eligible for some of the following:

• Disability Living Allowance (DLA): Children aged between 3 months and 16 years old may qualify for this if they need help with washing, dressing or getting about. Contact DLA direct, or speak to your local benefits office or social security department.
• Invalid Care Allowance (for carers)
• Incapacity Benefit
• Job Seekers Allowance
• Severe Disablement Allowance
• Disability Working Allowance
• Additional Income Support

These are for adults - contact your local benefits agency or local neighbourhood office for details of whether you are eligible.

• Housing Benefit
• Council Tax Benefit

Contact your local neighbourhood office for details.

The Disability Alliance produces The Disability Rights Handbook - a comprehensive guide to benefits for disabled people. Cost: £12 (£8 to those on benefits).

The Family Fund is administered by the Joseph Rowntree Memorial Trust on behalf of the Government. It makes financial grants to families caring for children up to 16 years of age, who have special needs or severe handicap. The grants are intended to provide equipment or services related to day-to-day care e.g. washing machines and holidays. The fund looks at each family situation individually and is pleased to consider a wide variety of requests for items or services, if these can be seen to assist family circumstances. If in doubt, it is always worth applying.

Employment and Training

If you are disabled or employing a disabled person, contact the Disability Employment Adviser at your local Job Centre for advice on employment issues, including equipment and training.

Advice and a job-matching scheme are also available from "Employment Opportunities for People with disabilities" who have a network of offices throughout England, Scotland and Wales.

Students with disabilities should contact Skill (National Bureau for Students with Disabilities) for information and support. Hereward College in Coventry welcomes disabled students from all over the world and offers a wide range of courses, with good facilities.

Children and Education

For concerns about schooling, contact your local Education Department or the special needs co-ordinator at the school (SENCO).

For Special Schools in your area, contact the relevant organisation and discuss this option with the Education Department.

Students with disabilities should contact Skill (National Bureau for Students with Disabilities) for information and support. Hereward College in Coventry welcomes disabled students from all over the world and offers a wide range of courses, with good facilities.

Equipment

There are many aids to make life easier, for those with poor mobility. Sometimes having modifications made to your home can also be helpful, for example extra handrails, or ramps for wheelchairs. Contact your local Social Services Area Office for details.

• LEXEQUIP buys and sells second-hand specialist equipment.
• REMAP is a small charity which helps design or adjust aids specifically for your needs.

Help for carers

Your local Social Services may provide siblings' groups, nurseries and day care. Also contact them for information on respite care, or speak to the Carers National Association who can also help with other issues. If you have access to the internet, look at the Department of Health's carers' website. Working parents of disabled children can contact Parents at Work for support.

Getting about

For advice on how your cerebral palsy affects your driving licence, contact the DVLA Drivers Medical Branch. For information on Car Parking Badges, contact your local Social Services Department. Please note that in the past the badges were orange. These have now been replaced by Blue Badges and time clocks, which can be used throughout Europe.

Railcards, and information on their use can be obtained from any mainline station or phone the Disabled Persons Railcard Office.

Your local social services department can advise you about concessionary bus passes for your area.

Socialising and Entertainment

Don't let cerebral palsy stop you from enjoying yourselves! Contact Scope and get in contact with your local support group for suggestions and information. Local tourist offices will be able to tell you, for example, which sites of interest are accessible by wheelchair.

If you have problems with mobility but would like to be a member of a local library, ask them whether they run a Library at Home service. This service, which runs in many parts of the country, will bring a range of books, talking books, large print books, tapes etc to your home.

Other information

Campaigning - The Disabled Rights Commission has recently been set up, with the aims of eliminating discrimination against disabled people, and securing equal opportunities for them. They provide a helpline and legal advice, and also welcome your opinion on the work they are doing.

Charitable Grants - Contact your local Social Services for details.

Housing - Contact Social Services for advice on getting the most suitable housing for you.

Voting - If you would find it difficult to go to your local polling station, remember that you are entitled to a postal vote. Recent legislation means that you can ask for Voter Assistance at the Polling Station if you require it, but you will need to contact your Polling Station in advance (details should be on your Polling Card, or contact your political party's local branch).

Useful Addresses

Association for Spina Bifida and Hydrocephalus
42 Park Road
Peterborough PE1 2UQ

Tel: 01733 555 988

Benefit Enquiry Line (for people with disabilities) Tel: 0800 44 11 44

Cerebral palsy helpline
Tel: 0808 800 3333

Children's Legal Centre
20, Compton Terrace
London N1 2UN

Tel: 0207 359 6251

Council for Disabled Children
8, Wakley Street
London EC1V 7QE

Tel: 0207 843 6061

Disability Alliance
Universal House
88-94, Wentworth Street
London E1 7SA

Tel: 0207 247 8763

Disability Discrimination Act Information Line
Tel: 0345 622 633 or 0345 622 644
Fax: 0345 622 644

Disability Living Allowance
Warbreck House
Warbreck Hill
Blackpool FY2 0YE

Disabled Living Foundation
380-384, Harrow Road
London W9 2HU

Tel: 0207 289 6111

Disabled Persons Railcard Office
Tel: 0191 269 0303

Disablement Information and Advice Line (DIAL UK)
Tel: 01302 310 123

DVLA Drivers Medical Branch
Swansea SA99 1TU

Employers' Forum on Disability
Nutmeg House
60, Gainsford Street
London SE1 2NY

Tel/Minicom: 0207 403 3020
Fax: 0207 403 0404

Employment Opportunities for people with disabilities
Tel/Fax: 0207 726 4961
Minicom: 0207 726 4963

Family Fund (Joseph Rowntree Memorial Trust)
PO Box 50
York YO1 2ZX

Tel: 01904 621 115

Health Information Service
Tel: 0800 66 55 44

Hereward College
Bramston Crescent
Tile Hill Lane
Coventry CV4 9SW

Tel/Minicom: 024 7646 1231
Fax: 024 7669 4305

LEXEQUIP
Harnhill Cottage
Waterton Lane
Amprey Crucis
Cirencester GL7 5RX

Tel/Fax: 01285 850 816

National Association of Toy and Leisure Libraries
68 Churchway
London NW1 1LT

National Disability Council
Department of Social Security
6th floor, Adelphi
1-11 John Adam Street
London WC2N 6HT

Tel: 0207 712 2099

Parents at Work
45 Beech Street
London EC2Y 8AD

Tel: 0207 588 0802

REMAP
Hazeldene
Ightham
Sevenoaks
Kent TN15 9AD

Tel: 01732 883818

Royal Association for Disability and Rehabilitation (RADAR)
12, City Forum
250, City Road
London EC1V 8AF

Tel: 0207 250 3222

Scope
PO Box 833
Milton Keynes MK12 5NY

Tel: 0808 800 3333 (9-9 weekdays, 2-6 weekends)

Skill: National Bureau for Students with Disabilities
336 Brixton Road
London SW9 7AA

Tel: 0207 274 0565 / 0207 978 9890
Fax: 0207 737 7477
Minicom: 0207 738 7722

War Pension Helpline
Tel: 01253 858 858