Date Revised:

Whether you have just been told your child has a learning disability, or you have started to care for an adult with learning disabilities, there is support available to help the person you care for reach their full potential, and to help you with your caring role.

Most people with a learning disability were born with it or acquired it shortly afterwards. They may have difficulty understanding, learning and remembering. This often makes it harder for them to communicate, learn new things, and sometimes to undertake physical tasks.

If you care for someone with a learning disability you may be a carer for the rest of your life. You may have decades of experience as you negotiate the health, education and social care systems through infancy, childhood and adulthood. 

Planning for the future

As you get older you may want to prepare for the future so that there are plans in place to support the person you care for when you are no longer around.

The Foundation for People with Learning Disabilities has produced a guide for parents of children (of any age) with a learning disability.  The guide has information about legislation, emergency planning and when your child moves away from home: Thinking Ahead: supporting families to plan for the future.

You may find that the person you care for, who has a learning disability, may start caring for you in return as you get older. This is known as mutual caring, and sometimes it is difficult to see when this is happening and to get the right support.

Ask questions

It may help to write down your questions before any appointments with professionals and take someone with you. It's extremely important that you are satisfied with the answers to all your questions, so if there's anything that you are unsure of, don't be shy to ask and, if necessary, ask again. 

Questions you might think about asking include:

  • Are there any changes I can make at home to make things easier?
  • Do you have any contact details for other organisations that can help?
  • Am I entitled to any benefits or financial help?
  • Is there any additional literature available?
  • Who is my care coordinator or key worker?

For most learning disability conditions there is a dedicated organisation and these can be excellent sources of information and advice. You should also contact your local carer service to see how they can support you.

Supporting siblings

There may be children in your family, very often siblings, who may also need support.  If they give support and care to the person with a learning disability then they are young carers and need to support with this.  

If you are a parent see Scope's information about supporting siblings.

Sibs is a charity for the brothers and sisters of disabled children and adults – helps both young and adult siblings:

BME carers

You may face additional challenges if you care for someone with a learning disability and you are from a Black, Asian and other Minority Ethnic (BME) Community. Carers Trust, in partnership with Hft, have produced a guide to help you find support: Reaching and Supporting Diverse Communities guide.

Coping with challenging behaviour

The Challenging Behaviour Foundation has information sheets for carers and professionals about challenging behaviour and severe learning disabilities. Find out more about challenging behaviour on the Challenging Behaviour Foundation website.

Do you help someone else manage their money?

FInd out about helping someone else manage their money.

Supporting someone who is in trouble with the law

ArcUK have a guide for carers who support someone with a learning disability who is in trouble with the law. The guide looks at all stages of the Criminal Justice System, from police custody through to Courts, Prison and Probation.   

Find more support

Get in touch with your local carer service to find out how they can help you and if they have any support groups.  You should also ask  your local council how they can help you, including having a carer's assessment.

There are lots of organisations that can help including:

You may also be able to get specialised support if you care for someone with Down's SyndromeAttention Deficit Hyperactivity Disorder (ADHD) or Autistic Spectrum Disorders.

Next update due: June 2017