Raising a disabled child can bring love and delight to a family. But having a disabled child in the family can also have a have a huge impact on family life. Your family may need support to take part in normal daily activities. This section of the website provides information on different sources of advice and support.
The disabled child you are bringing up has the same right to use services and activities as other children. The law says that your child should not be discriminated against or treated less favourably by services because they need ‘too much care and support’ or are ‘too badly behaved’.
Disabled Children’s Services
As the carer of a disabled child, you have the right to have the child’s needs assessed by your local social services department. You also have the right to ask for an assessment for yourself. An assessment could lead to services being provided for your child or to help you as a carer.
Support for under 5s
If the child is under 5, contact your local council to find out about the Early Support programme which supports parents and carers of disabled children aged five and under. It brings together all the services and support available from different agencies. This makes it easier for families to co-ordinate their child’s health, education and social care needs.
Sometimes families who are caring for a child or adult with a disability or health condition benefit from having a short break. Taking a break from caring for your child is not an admission of failure or a way of saying you don’t care. Without an occasional break you are likely to become completely exhausted or even unwell. If you need more information about respite care in your area contact your local council.
If your local council agrees that your child needs services, you can choose to get money to buy these services yourself. Direct payments should give you more control over how your child’s needs are met but also involve more responsibility for you.
Special Educational Needs
Some disabled children will have special educational needs which affect their ability to learn. For example, they may have difficulty with physical skills, the ability to understand or to concentrate or with behaviour. A child who needs a lot of help with their learning has special educational needs (SEN).
If you think your child may have special educational needs contact the SEN coordinator (SENCO) in your child’s school. Schools and colleges must do as much as they can to provide extra support for their pupils/students with SEN.
From 1st September 2014, there have been changes to the way children and young people who need more help are supported. Statements and Learning Difficulty Assessments (LDA) have been replaced by an Education, Health and Care (EHC) plan. An EHC plan sets out your child’s needs and how they should be met. You may be able to get a personal budget for your child, if they’re eligible for an EHC plan. This will give you more say on how money is spent on your child’s needs.
Find more information here.
As your child grows up
If you are caring for a young person you will need to think about transition from education to higher education, into employment and independent living. You will need to begin planning for this from the time they begin secondary education.
Caring for a disabled adult or older person
Caring for a disabled adult or older person brings its own challenges. Many kinship carers are also caring for disabled or elderly relatives. Some of the organizations listed below may be able to help you.
Sometimes you may feel that you want to talk to other people in a similar situation to your own. There may be support groups, parent groups and carers organisations in your local area for families who have a child with the same condition as yours
Benefits for disability
Please visit our page on Benefits for disabled adults and children, and their carers.
If you would like to get further advice or information on aspects of disability you may want to contact one of the organisations below. Alternatively please contact our advice line.
Advice Line: 0808 802 0202 weekdays 9am-8pm, weekends and Bank Holidays 11am- 4pm
National information, advice and support service for carers in England. The Carers Direct helpline can put callers in touch with specialist national or local sources of help, including social care departments, respite centres, specialist charities and other carers’ support groups.
Provides help, information and support on all aspects of caring. Can also give you details of local carers’ organisations.
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability. It holds a comprehensive and regularly updated database of national and local organisations that support families with disabled children. Includes details of local parent support groups. Contact a Family also has a dedicated Special Educational Needs advisory service.
Telephone: 0844 974 4099
The Family Fund gives grants to families with severely disabled children for things that make life easier and more enjoyable.
Telephone: 0117 906 1700
Website: www: hft.org.uk
Hft is a national charity, providing local support services for people with learning disabilities throughout England.
Telephone: 020 7843 2544
ICAN is the children’s communication charity. Its ICAN Help service provides help and advice to parents and practitioners about speech, language and communication. It includes a free call-back service with a speech and language therapist
Leonard Cheshire Disablility
Telephone: 020 3242 0200
Leonard Cheshire Disability is the UK’s largest voluntary sector provider of services to disabled people. These services include care homes, supported living, domiciliary support, day services, resource centres, rehabilitation, respite care, personal support and training and assistance for those looking for work.
Mencap works in partnership with people with a learning disability. All their services support people to live life as they choose. The Mencap Direct service offers impartial advice on all learning disability issues.
National Autistic Society
Advice Line: 0808 800 4104 Monday-Friday 10.00am-4.00pm
Provides individuals with autism (including Asperger syndrome) and their families with information, support and pioneering services and campaigns for a better world for people with autism.
Parent Partnership Services
Telephone: 020 7843 6058
Parent Partnership Services (PPS) are statutory services offering information, advice and support to parents and carers of children and young people with special educational needs (SEN). PPS are also able to put parents in touch with other local and national organisations. PPS have a role in making sure that parents’ views are heard and understood and that these views inform local policy and practice.