How to live fulfilling life with a learning disability

A new research project will explore how adults with a learning disability are developing fresh ways to live fulfilling lives in local communities, as traditional care provision is scaled back.

Many more people with learning disabilities are now living independently and using packages of personalised care and support to enable them to participate in activities in their local communities. At the same time, significant cuts to services and sites provided by local authorities, including the closure of day centres and reduced adult education provision, have created uncertainty for many.

The changes have provided new opportunities for many people to make choices about the care and support they receive and to engage in new activities and experiences. There is some anecdotal evidence of how adults with learning disabilities, together with their families, supporters and advocacy organisations, are developing new initiatives in the new environment of limited formal provision. However, overall, little is known about this potentially significant transformation in social care and support.

‘Self-build networks’ and learning disability

The research project seeks to examine in detail the innovations in social care developed by adults with learning disabilities and their supporters in four case-study areas in the UK – two in England (Southampton and Dorset) and two in Scotland (Glasgow and Angus, NE Scotland).

Examples of such initiatives could be forms of peer-support including ‘friendship circles’, pooling of personal budgets to hire out a space for a group event, and working with local community groups to develop inclusive activities. The project is calling these initiatives ‘self-build networks’, to reflect their local, ‘bottom up’, and ‘do it yourself’ nature.

Throughout the project, small advisory groups of adults with learning disabilities will be involved in the design of the research and the analysis of the data collected, supported by local advocacy organisations. It will be an interesting and empowering experience for those who get involved.

The project will develop a set of resource packs for emerging initiatives, on issues including funding, organisation and activities. The packs will also be sent to local care providers, and national agencies, so they know about this new form of social care, and how best to support it. There will also be an online resource, with lots of ideas and inspiration, stories from the case-study areas, and short films showcasing the initiatives people are developing.

Collaboration

Associate Professor Andrew Power at the University of Southampton, Professor Melanie Nind, also at Southampton, and Dr. Ed Hall at the University of Dundee are leading the research project. Two researchers, Dr. Hannah Macpherson (based in Southampton) and Dr. Alex Kaley (based in Dundee), are also involved. The project is funded by the Economic and Social Research Council.

Researchers at the universities of Southampton and Dundee, working with local and national partners, will speak to local care providers and adults with learning disabilities to find out how people are responding to changes in social care.

If you would be interested in contributing to the research, or have any questions, please contact Andrew Power at [email protected]

Dr Edward Hall

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