If you care for a person with a learning disability, whether it’s your son or daughter, brother or sister, parent, partner or other relative or friend, these pages are for you. Here you'll find some general advice as well as useful information on caring for someone with a learning disability, which aims to make the challenges faced by family carers a little easier.
Definition of learning disabilities
It is important to remember that people with learning disabilities are people first. There are around 1.5 million people in the UK with learning disabilities. These impairments are present when a baby is born or acquired shortly afterwards.
The World Health Organisation defines learning disabilities as "a state of arrested or incomplete development of mind." This means that somebody with a learning disability will have difficulties understanding, learning and remembering, and these difficulties will have an effect on their ability to interact socially, to communicate with others, to learn new things, and sometimes to undertake physical tasks.
Caring for someone with learning disabilities
Family carers of people with learning disabilities are often unique amongst carers. For many they will be experiencing a lifetime of caring, as a son, daughter or sibling with learning disabilities, who may have been expected to have a short lifespan thirty or forty years ago, may now be living a longer and more fulfilling life.
Negotiating the health, education and social care systems through infancy, childhood and adulthood is a daunting task but can also mean that family carers may have decades of experience. For carers of people with learning disabilities, having a break, finding support and getting the best and most appropriate services must be seen in the context of this lifetime of caring. Carers who have a learning disability themselves have their own specific needs.
Some people with learning disabilities are caring for a partner or friend, and often as families grow older the person who is being cared for may start to care for their parent or carer. This is known as mutual caring, and sometimes it is difficult to see when this is happening and to get the right support.
Black, Asian and Minority Ethnic Carers
People from diverse communities face additional challenges when caring for a person with a learning disability, Carers Trust in partnership with hft (www.hft.org.uk) have produced a resource guide to enable people to find support for their needs.
Caring for Someone with Challenging Behaviour
The Challenging Behaviour Foundation has produced new summary information sheets about challenging behaviour.
The information sheets are written by experts and cover a wide range of topics connected to challenging behaviour and severe learning disabilities. They are written for both family carers and professionals. The new summary versions contain all the key points of the full information sheets, but in a more accessible format.
The full information sheets are also still available on their website.
For more information, or to view the summary information sheets, please read our press release.
The National Valuing Families Forum
The NVFF is a national group bring together a network of regional family carer organisations to consult and feed into government policy and legislation affecting those with learning disabilities and their families. The attachment below shows the structure of the organisation and more information can be found here.
Advice for family carers
Whether you have just received a diagnosis of a learning disability for your son or daughter at birth or during childhood, or you have started to care for an adult with learning disabilities, you may feel confused and distressed. But there is help available for carers from health, education and social services, as well as organisations in the private and voluntary sector, which can help the person with the learning disability to reach their full potential, as well as help make your life as a carer more manageable.
It may help to write down your questions in advance of any appointments with professionals and to take a partner, friend or advocate with you to meetings. 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. They are there to help!
Questions you might think about asking include:
It’s also important to tell the people who help you if anything changes as you may be able to access further support. For most learning disability conditions there is a dedicated organisation and these can be excellent sources of information and advice.
Planning for the future
The Foundation for People with Learning Disabilities has produced a useful guide for parents of children (of any age) with a learning disability; the guide has useful sections on legislation, emergency planning and when your child moves away from home. The guide can be found here.
Looking after yourself is vital
See our section on taking care of yourself for some advice and a list of resources, articles and websites.
Still can't find what you're looking for? Why not post a message on one of our discussion boards or join our online chat room where you can meet, and possibly pick up tips and advice from, experienced family carers in similar situations to yours