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  1. Social History of Learning Disability
  2. Impact on people, policy and practice

Impact on people, policy and practice

The work of the Research Group has impacted on people with learning disabilities, policy, practice, the learning disability advocacy movement and the wider society.

Impact on people

The inclusion of people with learning difficulties lies at the heart of the work of the Social History of Learning Disability (SHLD) Research Group. Below are a selection of testimonies referring to the benefits that the Research Group can bring to people with learning difficulties.

Catherine O'Byrne, a project worker with the self-advocacy group Central England People First, said:

  • "Being part of the Research Group has helped (a key) member feel confident about challenging the National Institute for Clinical Excellence (NICE) about its Challenging Behaviour guidelines, and making sure they work inclusively."
  • "The Research Group has helped our members with learning disabilities to feel valued and that they have something to contribute as researchers."
  • "Our Chair spoke at the Social History of Learning Disability Conference in 2012. Following this boost to her confidence, she felt strong enough to argue for her mother (with dementia) to be placed in a more appropriate care home."
  • The Conferences are very important for us. We help to select the papers and we help make sure that the Conference is accessible to people with learning difficulties."

Our Journey Through Time was an oral history project with five young people with learning disabilities, who found out about the history of hospitals for people with learning disabilities in their area, and made a film about the project. The project summary describes how ...

  • "... the project taught us what life had been like for some people with learning disabilities only 30 years ago. It was very different to our lives; we have more choice, more freedom and more opportunities. As part of the project, we learnt how to ask questions, to listen, to record information and to produce a film."

Mabel Cooper (PDF), with Dorothy Atkinson of the Research Group, was able to research and write her own life story. In the book Forgotten Lives Mabel, a former long-stay hospital resident, shares her sense of pride at the achievement of producing her autobiography in the form of a book.

  • "I think it was nice for me to be able to do something, so that I could say 'I've done it'. It made me feel that it was something I had done. You've got something so that you can say 'This is what happened to me'. Some of it hurts, some of it's sad, some of it I'd like to remember. My story means a lot to me because I can say 'This is what happened to me', if anyone asks. So it's great, and I will keep it for the rest of my life. I will keep the book."

Impact on learning disability policy

In November 2012 the SHLD Research Group submitted three examples of good practice to the Department of Health consultation "What does good look like?", set up following the Serious Case Review into the abuse of patients with learning difficulties at the Winterbourne View hospital. These have now been selected (from over 90 submissions across England) for inclusion in the Good Practice Project. This provides a powerful endorsement of the Open University's work and its influence on policy and practice. The Department of Health report will be circulated as part of the Joint Improvement Programme. There will also be a national DH event in the autumn of 2013 to 'show-case' the six final good practice projects. The Research Group will present at this event with people with learning disabilities who were part of the work.

Impact on learning disability practice

The Research Group has successfully involved users in developing meaningful and relevant measures for the evaluation of services. Commissioned research into Supported Living in Croydon (2009-11) prompted a detailed response from the Learning Disability Team and the research recommendations informed the development of a business plan and changes to local policy and practice. Yarrow Housing (a London-based, voluntary sector provider of housing and support for people with learning disabilities) is currently using 'life journey map' materials developed in partnership with The Open University to train their staff members.  Importantly, learning disabled individuals have also been actively involved in developing teaching materials, which have been made accessible to a wide range of students, front line staff and multi-agency practitioners via a series of conferences and on-line teaching materials.

Impact on advocacy

The Social History of Learning Disability Research Group has helped to strengthen the profile and sustainability of a number of advocacy groups (such as Carlisle People First and Central England People First). Several groups have liaised with the Research Group on bids for funding and have used our conferences as a means to disseminate knowledge about their work to other people with learning disabilities, researchers and the policy and service provider community. Jan Walmsley is Trustee Advisor for My Life My Choice (Oxford) and Liz Tilley is on the board for Advocacy in Barnet. Members of the Research Group are also publishing a book on advocacy which includes a section on training for self-advocates and support staff.

Impact on society

Mabel Cooper, a woman with learning difficulties who was a prominent member of the Research Group, went into primary schools in the London boroughs of Southwark, Lewisham and Kent. This project involved Mabel talking with children about her life story, which included being sent away to a long-stay learning disability hospital as a child. The aim of her presentations was to support a shift in attitude away from views of people as dependent and 'ineducable' to a more inclusive society where people with learning difficulties, including those with challenging behaviours, are accepted, valued and welcomed within their local schools and communities. During Mabel's presentations children shared their own experiences of bullying and being treated differently, indicating the value of these sessions in opening up discussion of issues of diversity and difference. In 2013 the Department of Health recognised the importance of this work with a 'Good Practice' award.

Jan Walmsley has acted as advisor for the English National Heritage Disability in time and place project, a web-based free resource on the history of disability from 1050 to the present day. Research carried out by Jan Walmsley, Dorothy Atkinson and Sheena Rolph is cited as a main source for this website and our own website is linked as a resource.

One of the outputs of the Heritage Lottery Funded History of Day Centres in Croydon, the exhibition In our own words: Stories of Croydon’s Day Centres was displayed at the Museum of Croydon from May to September 2008. A group of people with learning disabilities developed the exhibition in conjunction with staff from Croydon's learning disability services and members of the project team.

Jan Walmsley advised Skills for People's No Going Back project, launched at the Central Library in Newcastle in March 2013.