Minding the Gap
4 May 2005
Forty per cent of people with learning disabilities are likely to need mental health support during their transition to adulthood. A project by Dr Val Williams and Dr Pauline Heslop of the Norah Fry Research Centre aims to ensure that these young people get the support they need.
Mind the Gap was an action research study, funded by the Foundation for People with Learning Disabilities, to follow up the findings of an inquiry into the mental health support needs of young people with learning disabilities. Until recently, it was not considered that people with learning disabilities could suffer from mental health distress. The inquiry in 2001, called ‘Count Us In’ alerted us to the fact that about 40% of this group (four times more than the rate for non-disabled young people) are likely to need mental health support at some point during their transition to adulthood.
Action research was conceived of in Mind the Gap as a way to ensure the research is embedded in practice, and has relevance and impact. The project was set up in partnership with commissioners, managers and practitioners in Somerset, and had a particular link with a new learning disability initiative in the local Connexions service. The research worked closely with young people themselves, and with family members, to enable them to take part in initiatives which were piloted and evaluated.
When asked about the kinds of support they appreciated, young people spoke of trust, reliability and availability. They wanted supporters they could become familiar with, and people who stuck by them. However, above all they said they valued friendships, just like any young person does. The research project therefore decided to work with a small group of students from a Somerset college who designed and ran a short course about emotional support for other young people with learning disabilities. The course, entitled ‘The Strongest Link’, was a great success, and enabled young people to develop their own confidence and express their feelings to each other. This is what one of the group members said afterwards: ‘It’s changed quite a lot for me, since I’ve been in Mind the Gap. It’s good to be part of a team. I’m often a bit of a loner.’
At the same time, a local parent who has two autistic sons was a co-facilitator in a parents’ support group. Parents of young people with learning disabilities are often expected simply to be advocates, fighters, carers and organisers on behalf of their young people. However, they are also people in their own right, with emotional lives and needs. In ‘Mind the Gap’, we set out to find ways of supporting parents to re-establish their lost identity. As one parent said, ‘parents like us are running on empty. We need to re-charge ourselves, before we can do anything else’. Mind the Gap was able to pilot an approach in which parents were encouraged to focus on themselves, and to build their own emotional resilience.
This project underlined the social causes of mental health distress in young people with learning disabilities
Emotional distress is not just a medical issue but has clear links with the appalling life circumstances faced by many young people with learning disabilities. Mind the Gap helped to underline the social causes of mental health distress in this group of people, and to suggest ways to ensure good emotional support for all. As one young person in the project said “I feel sad, upset and depressed when I keep things in. But Mind the Gap has helped me to let things out’. One of our main findings was that empowerment is not just a politically-correct buzz word. By actually taking control of a group and supporting each other, young people with learning disabilities can become emotionally stronger and feel more in control of their lives.
This project is a good example of practical research which bridges that gap between academia and the practical world of service provision and service users. Although the research study officially finished some eight months ago, Somerset services have formed a steering group to make sure that the research findings become embedded in their practice. This group is actively finding ways for both the main project initiatives to be replicated in the county, and to make sure that more people benefit. At national and international level, in addition to academic papers (Williams and Heslop, forthcoming), the project has produced a full report, as well as a chapter for a publication by the Foundation for People with Learning Disabilities, which was launched in April 2005 (FPLD, 2005). A pack of accessible materials for the young people’s course is being published on the website for the Foundation, as well as guidelines for Connexions services.
Williams, V. and Heslop, P. (2004) Mind the Gap: Research about the emotional needs of young people with learning disabilities.