Scope - about cerebral palsy. For disabled people achieving equality.

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Frequently Asked Questions

Scope produces a number of free factsheets, covering therapies and other aspects of living with a disability.

If you have any questions not covered here, please call us free on 0808 800 3333 or email response@scope.org.uk.

The information given in these FAQs is for general guidance only. Action should not be undertaken without obtaining specific advice - please refer to our Terms of Use for further information. If you have a specific query, please contact the Scope Response for assistance.

This page contains hypertext links to websites operated by third parties. We at Scope have no control over, and shall not be liable for, the content of such websites or the actions of such website operators. Please see our Terms of Use for further information.

What is cerebral palsy?

Cerebral palsy is primarily a disorder of voluntary movement and co-ordination, due to a defect or lesion of the immature brain.

It is an umbrella term covering a group of non-progressive, though not unchanging, motor impairment conditions, which range from multiple and profound to barely detectable. There are three main types:

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What causes cerebral palsy?

See also Parent Information Leaflets.

Sometimes there is no obvious single reason why someone has cerebral palsy. Causes can be multiple and complex. Studies suggest that cerebral palsy is due mostly to factors affecting the brain before birth.

It is commonly the result of one or more abnormalities in the brain, before growth and development are complete. Some of the factors associated with the incidence of cerebral palsy are low birth-weight or premature birth, multiple births, asphyxia (lack of oxygen), infection or a cerebral bleed. Possible causes also include: infection in the early part of pregnancy; infection or accident in the early years of a child's life and abnormal brain development. There may also be a genetic link, but this is quite rare.

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I've just been told my child is likely to have cerebral palsy – what's next?

Your child's paediatrician may consider your child is likely to have cerebral palsy or you've may have just left the hospital or child development centre with a diagnosis of cerebral palsy for your child. What happens next?

The time around diagnosis is often a difficult time for parents and families. Your next appointment with a consultant may not be for several months and you might want to talk to someone who has some knowledge of cerebral palsy. You can call 0808 800 33 33 in confidence and talk to one of our staff about your child and how s/he may be affected. They can explain more about the condition and answer some of the questions you may have.

Services vary enormously across the country. We would always advise talking to your Social Worker, Doctor, Health Visitor or Scope response worker about what is available in your area.

In general, physiotherapy may be the first thing arranged for your child. An occupational therapist might also become involved if your child needs special seating or equipment. If your child has problems with feeding, swallowing or speech, a referral to a speech and language therapist may be arranged.

We offer information and support, including a set of leaflets aimed at parents of newly diagnosed children.

We can also help you make contact with your Scope response workers, who work in the local community and can offer further support and advice, as well as put you in touch with local services.

Face 2 Face projects, where parents offer befriending and support to other parents, are operating in some areas. For more information, visit the Face 2 Face website on http://www.face2facenetwork.org.uk/.

See also the Scope's Early Years section at http://www.scope.org.uk/earlyyears/index.shtml.

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How do I find the right school for my child?

This is not an easy question to answer and is not simply a case of identifying a school that you consider suitable. When visiting schools, you can gain an impression of the physical environment, accessibility and general culture. However, to get a clear picture of various schools' knowledge, skills and experience of disability, you will need to ask specific questions. Scope's 'A parental guide to obtaining an assessment of your child's special educational needs' outlines the statementing process and highlights some of the questions you may need to ask when comparing different schools.

Special Needs UK website www.specialneedsuk.org and Independent Schools of British Isles website www.isbi.com enable you to search schools by type and region and provides information about each school.

The Special Education Directory is published by The School Government Publishing Company www.schoolgovernment.co.uk provides information on schools and colleges providing special needs facilities.

The Gabbitas Guide lists special schools and mainstream schools with provision for special needs at www.gabbitas.co.uk.

'Which School? For Special Needs' can be ordered from John Catt Educational Publishers at www.johncatt.com.

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A Statement of educational needs – how do I find local support?

Children with special educational needs often need an assessment (commonly called a 'Statement'). The Statement should describe all of your child's educational needs and the special help and support your child should receive. A Statement is made if the help your child requires cannot be provided by the school. The Local Education Authority also considers services available, inclusion policies and funding.

If your Local Education Authority has begun a formal assessment of educational needs, you should have been provided with contact details of organisations offering Independent Parent Supporters (IPS) in your area. IPS seek to ensure your voice is heard and that your child's needs are considered throughout the process. You should be given information on local arrangements or services, for example, volunteer parents, who are experienced in special needs issues or retired education professionals who continue to help parents.

See also Scope's factsheet 'A Parental Guide to obtaining an assessment of your child's special educational needs'. This can be downloaded from www.scope.org.uk/information/factsheets/index.shtml You can call Scope on 0808 800 3333, for information on the Statementing process and special needs education.

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Does Scope work only with people with cerebral palsy?

Scope is a national disability organisation whose focus is people with cerebral palsy (cp). We were set up 50 years ago to provide education facilities for young people with cerebral palsy when state services were poor or non-existent. Scope now has a wide range of services and is often the initial contact, for parents, professionals and carers. It provides information, support and practical help via national and local services. While specialising in information about cerebral palsy, the Helpline responds to enquiries on other impairments and will offer support, but may refer you to a more appropriate specialist agency.

Scope campaigns to ensure issues important to disabled people have a high national profile, by influencing social, political and environmental policies at local and national Government levels. Scope provides information and support services for people with a wide range of impairments, in order that disabled people can achieve equality.

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I want to work – how can Scope help?

Scope's Employment and Training Services offer a range of services from skills development to supporting disabled people into open employment. We support over 1,500 people across a wide range of employment, and work with over 750 employers.

Support varies from preparation for work schemes to personal development programmes, from vocational training to volunteering opportunities. Scope runs skills development centres and other projects aimed at increasing disabled people's opportunities.

Scope's Employment Services offer people a tailor-made package of support, including work/benefit calculations; job search; mentoring; mediation at time of crisis; career development and information about other organisations and services that can help.

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I seem to be getting worse. I thought cerebral palsy wasn't supposed to change?

In cerebral palsy, the brain impairment is non-progressive; this does not get worse. However, it is not necessarily the case that physical capacity and function will remain the same throughout an individual's lifetime. There can be maturational, developmental or aging changes that can affect an individual's physical ability.

For more information please refer to our factsheet, 'An Introduction to Ageing and Cerebral Palsy'.

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My accommodation is no longer suitable – who can help?

You may want to move for various reasons. This is generally not a quick process. There is a shortage of local authority adapted accommodation throughout the country and waiting times can be long. Housing Organisations Mobility & Exchange Services (HOMES) is supported by Government to work with housing associations and councils, offering a range of services to help people to move. Services include the HOMESWAP scheme, the HOMES Mobility Scheme, Shared Ownership HOMES, and Available HOMES. See www.homes.org.uk.

www.housingnet.co.uk provides information on topics including private housing, social housing, student housing and house maintenance.

If you live in residential accommodation, Social Services or Community Teams may be able to offer advice and information about other residential accommodation in your area.

www.carehome.co.uk also offers information on residential accommodation.

Another option might be to have your present accommodation adapted. A Disabled Facilities Grant may be available, depending on your level of income. You apply for this to your Local Authority. See Scope's information sheet on DFGs.

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Where can I find out about specialist equipment for disabled people?

As with any equipment, it is very important to have an assessment by an appropriate specialist (often an occupational therapist) in order that you obtain the most appropriate equipment to meet individual and specific need.

Below are two agencies which have specialist information on ranges of disability equipment.

Disabled Living Foundation gives practical, up-to-date, unbiased information and advice on disability equipment.
Tel: 0845 130 9177
Email: info@dlf.org.uk
Website: www.dlf.org.uk

Abilitynet is a specialist national charity computer assessment and information service and can supply specialised computer systems for disabled people.
Tel: 0800 269545
Email: enquiries@abilitynet.co.uk
Website: www.abilitynet.co.uk

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What are Direct Payments?

Instead of receiving support services directly from local authorities, disabled people can opt to receive the equivalent amount in cash and buy their own support package. Direct payments allow a person who has been assessed as needing services to receive cash to arrange and pay for these services independently. You can have a combination of some services provided directly by Social Services and others arranged by yourself with direct payments. The vast majority of people assessed as needing services have a right to direct payments.

Direct payments enable you to choose how you organise your social care needs in a flexible way that suits you. They are not taken into account when calculating income for benefits and are not liable to income tax. However, users need to show their local authority that the money paid to them is being spent in accordance with their care plan.

Download a summary of Scope's 'The Direct Approach: Disabled people's experience of direct payments'.

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