A research project run jointly by the University of Central Lancashire and the Children’s Commissioner looked at the obstacles to independence for young people with disabilities. The findings are reported by Jane Lloyd, Zac Carr, David Corr, Chris Knowles, Ellie Reed, Daniel Sheehan and Rosie Winstanley
We are a group of young people armed with the experience of having a diverse range of disabilities including learning disabilities. Between November 2012 and August 2013, we were part of a team who carried out a research project with staff from the University of Central Lancashire and the Office of the Children’s Commissioner. One of the research staff is writing this article with us about independence.
Things that increase independence
A lot of the young people and families talked about the transition from being a child to a young adult. People in the research said that the two most important things are that young people have timely clear assessments of what they need and that the assessments should result in a plan to help them get what they need. Plans should include specific advice; for example, physiotherapy, to make sure adaptations are in place if they are needed.
Young people in the research also said that having community activities that they enjoy, and which suit their abilities and interests, are important ways of increasing independence. We also think it’s really important that when disabled young people begin to get older, at age 16 and 17, they should be able to do grown-up things, like going to stay in a hotel.
After reading the experience of people who took part in the research, we think it’s very important that as disabled young people with learning disabilities get older they get the support to learn new activities and life skills, like cooking, ironing and looking after pets. One young person we interviewed thought that school should help young people learn these life skills.
Young people also talked about needing help to make important decisions, like where to live. They thought their parents might be able to help, but they said (and we think it’s very important) that young people with learning disabilities’ rights to have their own voices heard is supported.
One young person said: “It shouldn’t be the parent who decides where you live”.
We think it’s important for disabled young people to have someone they know and trust who can speak for them if they need it; but the person needs to know how to keep in the background until they’re needed!
Some of the young people in the research thought that having somewhere to live, away from parents helped them feel independent. After reading the interviews, and from our own experiences, we think that having somewhere to live that respects disabled young people, and protects their dignity is really important. This means having their own private space that gives them privacy if they live in a shared house. Young people described having money to be able to choose basic things like clothes as important. Some people said they would want the right and space to have a pet.
We believe that to be able to live independently, young people with learning disabilities need the right help; and that support staff and personal assistants need to have training to learn how to do it.
Things that make it hard to be independent
We learnt, from our own experiences and hearing about the lives of the people in the research, that the way young people with learning disabilities are treated can make a big difference to how independent they feel, and become.
From the stories of people in the research and our personal experiences, we think that being treated like ‘kids’ with adults always thinking young people who have learning disabilities should be with their parents, makes it difficult to get any independent experiences.
Always doing things, and being with carers or parents makes it hard to get used to doing things without them. The way young people are treated and talked to can also make it difficult for them to become independent: for example not being respected, or being ‘shouted at’; and adults making assumptions about what young people with learning disabilities can, and can’t decide for themselves.
We learnt about things that negatively affect the choice of where young people with learning disabilities live. Parents believing that no one can care for their son or daughter better than they can results in young people with learning disabilities missing out on experiences.
Young people having a choice is very important. Some people might not want to move out.
One young person said: “Having to live in shared accommodation can be difficult if you’re not used to sharing”.
Things that help get a job
We think one of the most important things to help young people find work is that they should have a career path that interests them. The young people in the research said they need to have volunteering opportunities to try out, learn and get experience of work. They also thought schools should help them get voluntary work experience.
The young people also said that employers need to know how to help young people who have learning disabilities, through giving them help and support to learn; for example, by showing them what to do.
We hope you have enjoyed reading about our research. As well as writing a written report of the things we found out about, we produced a DVD to help explain what we learnt. One of us even appeared live on the BBC Breakfast programme! We showed the DVD to parents, young people and services for young people. We are planning to create a website as a result of the research and have met with MPs at the House of Commons to present our findings.
You can find full details of the project at: OCC website http://www.childrenscommissioner.gov.uk/content/publications?search=See+things+our+way
• Being treated like ‘kids’ with adults always thinking young people with learning disabilities should be with their parents, makes it difficult to get any independent experiences.
• To live independently, young people with learning disabilities need the right help; and support staff and personal assistants need to have training to learn how to do it.
•Young people with learning disabilities’ right to have their own voices heard should be supported.
• Having somewhere to live that respects disabled young people, and protects their dignity is really important.
• Young people with learning disabilities should be supported to have a career path that interests them and volunteering opportunities to try out, learn and get experience of work.
• Employers need to know how to help young people who have learning disabilities, through giving them help and support to learn; for example, by showing them what to do.