Adult life for a person with a severe learning disability raises the same questions and concerns any adult may have; where to live, what to do during the day, employment and finances - with the addition of what support is needed to enable them to do these things.
“I have always being heavily involved in caring for Deepak…” - read ‘A Sibling’s Perspective’, to hear how Deepak, a young man with severe learning disabilities, has been supported by his sister.
For some adults with severe learning disabilities, challenging behaviours may have become less of an issue as they have increased their communication skills and independence; however some behaviours may have also changed or become more serious. Behaviour change can be supported by anyone involved in the individual’s life, as long as everyone uses the same strategies. It is helpful to seek professional support where possible and get appropriate training for family members and support staff; this is explained in the CBF’s resource for commissioners, Services for Adults with Learning Disabilities who display Challenging Behaviour – Well-matched and Skilled Staff.
We all have needs, wants and aspirations and these should be taken into consideration when thinking about what would give your family member a really good quality of life. Good support in adult life can look different for different people, the key to good support is that it’s personalised and designed for the individual – to meet their needs rather than fit anyone else’s plans or agendas. This approach, known as ‘personalisation’, is becoming more common in care services, but does not always happen automatically. There are a lot of resources available to aid you in planning and organising the right support for your family member; see Further Information for Parents and Challenging Behaviour: a guide for family carers on getting the right support for adults.
Once your family member is officially an adult you may worry about your continued involvement in their life and whether you will have a say in decisions made about their lives. To find out about the law for adults who may be unable to make decisions for themselves, see Further Information for Parents or contact the Family Support Service. Carers can apply for additional legal powers to make decisions about their family member’s finances or welfare; the CBF produce an information sheet called Getting Legal Authority that tells you more.
Family carers often find themselves speaking out for their family member and the CBF’s Advocacy Guide tells you about all aspects of advocating successfully for someone. Getting the right services is often more of a challenge with the current government cuts; 10 Top Tips gives some guidance on what you can do.
Adults with severe learning disabilities who display challenging behaviour have the same rights that all adults have. They also have the right to equal treatment and access to services, and to not be discriminated against because of their disability. Don’t forget that these protections are in place and can be used to strive for a better quality of life for adults with severe learning disabilities.
Contact our Family Support Service if you are concerned that an adult you care for is being denied his or her rights. To find out what the CBF and the Challenging Behaviour National Strategy Group do to campaign for the rights of people with severe learning disabilities and behaviour that challenges, click here.