Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities

• Published in: Journal of intellectual disability research Vol. 54; no. 2; pp. 144 - 160
• Main Authors: Dunn, M. C., Clare, I. C. H., Holland, A. J.
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01-02-2010; Wiley-Blackwell; Wiley Subscription Services, Inc
• Subjects: Adult; Adults; Attitude of Health Personnel; best interests; Biological and medical sciences; care homes; Decision Making; Decision Making - ethics; Developmental disabilities; Disabilities; Discrepancies; England; ethics; Foreign Countries; Grounded Theory; Group Homes - ethics; Group Homes - legislation & jurisprudence; Humans; Independent Living; Inservice Training; intellectual disabilities; Intellectual Disability; Intellectual Disability - rehabilitation; Interviews; Learning disabled people; Legal Responsibility; Legislation; Medical ethics; Medical sciences; Mental Capacity Act 2005; Mental health; Mental Retardation; Personal Autonomy; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Quality Assurance, Health Care; Residential Care; Residential Facilities - ethics; Residential Facilities - legislation & jurisprudence; Risk-Taking; Social psychiatry. Ethnopsychiatry; Social Support; Socialization; substitute decision-making; Support workers; Wales; Well Being; United Kingdom (Wales); United Kingdom (England); United Kingdom; Europe; England; Wales; United Kingdom > UK; Ability; Social environment; Handicap; Human; Decision making; Legislation; Mental health; best interests; Developmental disorder; Residential treatment; Mental retardation; Ethics; intellectual disabilities; Grounded theory; Professional practice; substitute decision-making; Intellectual deficiency; Social worker; Mental Capacity Act; Adult; Qualitative analysis; care homes; Public health
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/j.1365-2788.2009.01228.x

Background  In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision‐making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her ‘best interests’. However, the value of adopting established principles and procedures for substitute decision‐making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day‐to‐day residential support provided to adults with intellectual disabilities (ID).
Methods  This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices.
Results  In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision‐making within a broad moral account of their care role, orientating their support towards helping residents to live ‘a life like ours’. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents.
Conclusions  Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision‐making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of ‘good’ care.