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 get their 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 family or to help you as a carer.
You can find information here about getting assessed and what services can be provided.
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. Short breaks may also give your child the opportunity for new experiences and to make new friends.
the main route to accessing a short break is to ask for an assessment of your child’s and family’s needs (see above). Your local Family Information Service may have information on what’s available locally, or see www.sendirect.org.uk.
If your local council agrees that your child needs support services, they must offer you the option of receiving direct payments to arrange care and support yourself, instead of having it arranged for you. Direct payments should give you more choice and control over how your child’s needs are met but also involve more responsibility for you.
Every local authority must ensure that there is a service in their area offering advice and information on setting up and managing direct payments.
Find more information about direct payments here.
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).
All early years education providers (for children aged 0-5) must follow the Early Years Foundation Stage (EYFS) framework. This includes having arrangements in place to identify and support disabled children and children who have, or may have, SEN. Find more information about support in the early years here.
Most children with SEN will go on to mainstream schools. Some will go to special schools where all the pupils have SEN.
Schools and colleges must do as much as they can to provide extra support for children with SEN. Every mainstream school has a special educational needs coordinator (SENCO) who is responsible for organising extra help for pupils with SEN.
Education, Health and Care Plans
Your child may need an Education, Health and Care (EHC) Plan if they need more help than their school or college provides. EHC Plans identify educational, health and social needs and set out the additional support to meet those needs.
EHC Plans only apply to England. If you live in Wales a statutory assessment is the first step to getting a statement of special educational needs. Find information about the process in Wales here.
You, your child (if aged over 16) or anyone else involved with the child can ask the local authority to carry out an EHC assessment.
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.
For pupils with an EHC plan, preparation for adulthood must start when the plan is reviewed in year 9 (age 13/14) and continue every year after that. This should focus on what your child will need to support their move into adult life, including further education, employment, independent living, relationships and staying healthy.
Find more information on EHC assessments and plans here.
As your child grows up
Disabled children receiving support from Children’s Services will be transitioned to adult care and support when they are 18.
If a child is likely to have needs when they turn 18, the local authority must carry out a ‘child’s needs assessment’ before then if it considers it a ‘significant benefit’ to the child to do so.
The local authority must also carry out a ‘child’s carer’s assessment’ if the carer is likely to need support when the child turns 18. This will look at the carer’s ability and willingness to continue caring for their child, the outcomes they hope to achieve (such as paid work or study) and the support they might need to do so.
Find more information about transition planning here.
Support groups can be an excellent way of getting practical and emotional support. There may be support groups, parent groups and carers’ organisations in your local area for families with disabled children or children with a specific condition. National support groups are usually for parents of children with specific conditions. Click here for Contact a Family’s information about local and national support groups.
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. Contact Carers Direct or Carers UK for advice and support (see below).
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.
Helpline: 0300 123 1053 weekdays 9am-8pm, weekends 11am- 4pm
National information service for carers in England. The Carers Direct helpline can give you information to help make decisions about your personal support needs and the needs of the person you are caring for. It can also put you in touch with specialist national or local sources of help.
Provides information and advice 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. Contact a Family also has a dedicated Special Educational Needs advisory service.
Disability Law Service
Telephone advice: 0207 791 9800 Monday-Friday 10am-1pm & 2pm-5pm
Legal information, advice and assistance for those with disabilities and their carers. Telephone advice covers community care, employment and disability discrimination, with more extensive online information and factsheets.
Telephone: 01904 621115
The Family Fund gives grants to families with disabled or seriously ill 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 and their carers throughout England.
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 helpline offers advice and support for people with a learning disability, and their families and carers.
National Autistic Society
Helpline: 0808 800 4104 Monday-Thursday 10am-4pm, Friday 9am-3pm
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.
Information, Advice and Support Services Network
Telephone: 020 7843 6051
IASS Network supports and promotes the work of Information, Advice and Support (IAS) Services across England. Local IAS Services have a duty to provide information, advice and support to disabled children and young people, and those with SEN, and their parents. You can find details of your local service on the website.