Lived experience and the social model of disability: conflicted and inter‐dependent ambitions for employment of people with a learning disability and their family carers

Abstract

Accessible Summary In the UK very few people with learning disability and/or autism and their family‐carers have a paid job although a lot of them may wish to work. National plans from the Government have not helped to change this. This article talks about a consultation we did on adults with learning disabilities and/or autism who attend day centres and their family‐carers. We asked about their current situation, their employment and the barriers to work. We found out that very few people with learning disabilities and/or autism or their family‐carers were employed. We found that there were lots of things stopping people with learning disabilities and/or autism and family‐carers from being able to work. We conclude that disability theories like the “social model of disability” need to go back to looking at inclusion, citizenship and independence, based on the real life experience of people with a learning disability. The government needs to provide strong plans to help people with learning disabilities and/or autism and family‐carers get into work. “Co‐production” networks should be set up between people with learning disabilities and families to support employment. Abstract Background Only 5.9% of working adults with a learning disability are in paid employment and their family‐carers are similarly likely to be unemployed, as they continue to take on an extended caring and advocacy role as the welfare state retreats. Despite social policy efforts to stimulate employment for people with a learning disability, there has been little or no progress. Changes in the language of welfare benefit departments seek to use the words once heralded as success for the Disability rights activists and proponents of the social model: such as Inclusion, independence and citizenship. A new definition of the social model of disability utilising Hannah Arendt needs to redefine the “private” sphere of the lived experience of people with a learning disability to allow for a better understanding of the inter‐dependencies that exist between people with a learning disability, their family carers and a wider support network. Materials and Methods Empirical data were collected in a mixed methods study while undertaking a consultation on the future of day services for people with a learning disability in a Local Authority in the north of England, UK. Results The results reveal high levels of inter‐dependence between people with a learning disability and their carers, combined with the continued financial struggle as a lived experience of caring. The study found that barriers in providing care and support restrict the rights of people with a learning disability and their carers to secure employment. Conclusions There is a need to reconceptualise the social model of disability to more closely resonate with the lived experiences of people with a learning disability and their carers. A newly revised theoretical approach should incorporate the "private" sphere of live acknowledging the inter‐dependent, co‐produced relationships, between people with a learning disability and their carers to support and enable employment for both people with a learning disability and their carers under the Care Act 2014 (Department of Health, 2014).

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