This thesis is about parents who manage direct payments for their adult children with severe learning disabilities and complex support needs. The twelve parents in this research, in different areas of England, instigated this role in line with government policy in the UK, in an effort to bring about a better quality of life for their children. They have since theoretically been assigned the role of 'suitable person' under the Mental Capacity Act 2005 and the Health and Social Care Act 2008. The research aimed to gain an understanding of their experiences of carrying out this role. An (auto) ethnographic methodology was adopted, since I share with the participants the experience of managing direct payments for my own son. A key part in the reflective element was the mutuality and differences of the participants' and my own experiences of carrying out this role. This thesis unpicked the different roles played by the participants: parents, managers, and 'suitable person'. It highlighted the safeguarding roles parents performed, which were closely linked with a personalised understanding of their child, ultimately enabling them to implement tailored solutions for their care and support. But it also highlights that the 'informality' of their formal roles proved to be a distinct disadvantage for them. This thesis has exposed stereotyping that still underpins social services' responses to people with learning disabilities, and the unequal balance of power experienced by parents when they came into contact with care professionals. The key concepts of choice, control and partnership are questioned in the thesis, and the negative effects on the lives of parents are set against the positive outcomes they can see for their sons and daughters. The thesis also highlights a general lack of understanding of how capacity is assessed under the Mental Capacity Act and the roles of professionals and parents within 'best interests' decision-making. This thesis therefore considers the gulf between lived reality and policy rhetoric.
| Identifer | oai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:627958 |
| Date | January 2013 |
| Creators | Coles, Barbara Ann |
| Publisher | University of Bristol |
| Source Sets | Ethos UK |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
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