'Just being selfish for my own sake . . .': balancing the views of young adults with intellectual disabilities and their carers in transition planning (original) (raw)
Related papers
Sociology of Health & Illness, 2010
For young people with intellectual disabilities (ID), the transition from children’s to adult services has long been recognised as a challenging move. One of the aims of the White Paper Valuing People (2001) was to address some of the problems associated with this transition. This paper reports on data from a project which examines the impact of these service changes, and the ways in which transition is negotiated by carers, professionals and users. It presents a conversation analysis of eight tape-recorded formal review meetings at which transition to adult services is discussed. It takes as its starting point the existing interactional work on ID and the way in which this demonstrates the effects of the local and contextual specifics of particular kinds of interaction on the eventual outcomes (e.g. Rapley 2004, Antaki 2001, Maynard and Marlaire 1992). We show that an attempt to allow self-determination in the context of transitions can paradoxically result in undermining user choice and control. We also argue that, while a rule-based approach to practice may offer moral clarity for professionals, it can result in interactional and practical difficulties which cannot be easily reconciled.
Sociology of Health & Illness, 2010
For young people with intellectual disabilities (ID), the transition from children's to adult services has long been recognised as a challenging move. One of the aims of the White Paper Valuing People (2001) was to address some of the problems associated with this transition. This paper reports on data from a project which examines the impact of these service changes, and the ways in which transition is negotiated by carers, professionals and users. It presents a conversation analysis of eight tape-recorded formal review meetings at which transition to adult services is discussed. It takes as its starting point the existing interactional work on ID and the way in which this demonstrates the effects of the local and contextual specifics of particular kinds of interaction on the eventual outcomes (e.g. . We show that an attempt to allow self-determination in the context of transitions can paradoxically result in undermining user choice and control. We also argue that, while a rulebased approach to practice may offer moral clarity for professionals, it can result in interactional and practical difficulties which cannot be easily reconciled.
Journal of Applied Research in Intellectual Disabilities, 2001
The present paper describes con¯icts of interest in families which include someone with intellectual disabilities. Data were taken from a study concerned with the 1995 Carers Act. The research examined the experiences and views of 51 families who had some kind of assessment by a social services department. Cases were analysed where it was found that carers, the people for whom they cared and the assessors did not agree about such con¯icts. Assessors sometimes stereotyped families and spoke of con¯icts of interest when the situation was more complex. In particular, the real con¯ict was often between the whole family and an inadequate service system that did not offer enough support or choices to the individual. Con¯icts which had occurred were related to three major motives driving carers: (1) the need for a break from caring; (2) the need to speak for their disabled relative; and (3) their concern for standards of behaviour. The present authors report on how these situations were handled by assessors and conclude with some recommendations for good carer assessments which will help to resolve con¯icts of interest. A greater degree of informed choice for individuals with intellectual disabilities will in itself resolve many potential con¯icts of interest. National Strategy for Carers (DoH & SSI 1999) set out to strike the right balance between the rights of the people who need care and those of their carers: We must not subordinate the needs and wishes of one party to those of the other. Achieving this balance is never easy. But it remains our aim' (DoH & SSI 1999, p. 14) However, some recent writers have urged us to be aware of the`shared agenda' between the carer and the disabled person. Both Twigg & Atkin (1994) and Todd & Shearn (1996) suggested an approach which takes into account the relationship and the common interests of both parties,`developing an agenda of shared issues. .. rather than the more usual situation where the dif®culties one party encounters tend to be attributed to the other' (Todd & Shearn 1996, p. 398). Nolan et al. (1996) also looked to mutuality of care as a source of satisfaction for carers and found that a positive attitude in the`cared for' person could be a major reward for the carer. Despite the legislative rights accorded to disabled people themselves (e.g. by the National Health Service and Community Care Act), the carer in the ®eld of intellectual disabilities has always had a strong voice in terms of articulating needs and advocating in the best interests of the disabled person, who in some cases, literally cannot speak for her or himself (see Beresford 1995; Baldwin 1996; Walmsley 1996): Carers are generally listened to more than service users, because they are more articulate. Whilst this is understandable, it avoids tackling real differences of opinions that may exist, and is likely to result in the users' voice being lost.' (Baldwin 1996, p. 57) There is a potential mismatch between carer involvement and an approach that focuses only on the person with intellectual disabilities (Blacher & Baker 1992; Walmsley 1993). Nevertheless, as Todd & Shearn (1996) pointed out, the service world often does not formally distinguish between the needs of the carer and the needs of the service user. Much of the literature focuses on parents' and carers' views, and deals with their dif®culties, including those of moving on from the`parental role' (see Richardson & Ritchie 1989; Todd & Shearn 1996); these carers are people who may well have taken on a lifelong commitment of caring. In the case of someone with an intellectual disability, caring can be synonymous with`being responsible for' and this creates a relationship that has to be handled very sensitively in order to avoid tensions. Walmsley (1996) noted that research seldom seeks the views of people with intellectual disabilities themselves on their family life. The present study attempted to rectify this imbalance by interviewing both the carer and the person cared for.
Sociology of Health & Illness, 2011
Over the last decade the UK Government has made proposals to empower individuals with learning disabilities. Strategies have been implemented to reduce institutionalisation and social segregation. Consequently, some learning disability services are being phased out and the focus of care has moved away from institutions and into the community and family domain. Focussing on discourse as a site for social action and identity construction, we used critical discursive psychology to examine focus group discussions between family-carers about facilitating the independence of adult family-members with learning disabilities. Unlike official UK government and learning disability services' constructions of empowerment policy, we found that parents invoked empowerment talk: 1) as a resource to construct the facilitation of independence as an abstract, irresponsible, politically correct professional trend; 2) dilemmatically with meritocratic or practical arguments to undermine notions of facilitating choices;
Disability & Society, 2019
The transition from school to adult services for young people with severe intellectual disabilities has been identified as an area of concern, particularly with regards to how young people can be involved in meaningful ways. Additionally, although available resources and organisational practices seem to play important roles, there seems to be a lack of understanding as to how societal influences shape the process. Our study presents case studies of three young people and their journey from school to adult services from an ecological perspective, examining the decision-making process in the context of multi-agency involvement. We suggest that each transition journey challenged conceptualisations about the involvement of young people in the decisionmaking process. While the practical aspects of the transitions were described as positive, barriers and limitations were identified in the wider organisational context. The only people who clearly talked about the transition in terms of the longterm future were the parents.
Parent, carer, person: future plans and the identities of parent carers for people with disabilities
Disability & Society, 2016
Parent carers are often central in future planning for their children with disability; however, little is known about the implications of planning for parents' futures and aspirations. In understanding these, parents' own identities are important, but how these identities intersect with their planning is not well understood. This study explored how parents were positioned in discussions about planning. Interviews with parents and planning service staff highlighted three positions among parents-carer, parent, and person-representing multiple, intersecting identities. These impacted on and were impacted by planning in particular ways. Understanding these processes may assist programmes to support parents more effectively.
Child & Family Social Work
Disabled young people leaving care often experience a more complex transition to adulthood than other youths. Still, policy and services can fail to recognize the intersection between a young person's care experiences and disability. Drawing on data from a qualitative interview study with 14 social workers who work with aftercare in the Norwegian child welfare services, we investigate social workers' professional judgements about support for this subgroup of the leaving care population. Our analysis uses the theoretical construct of institutional logics and shows that social workers did not include concepts of disability in their judgements about support for these young people. Instead, the social workers' considerations were guided by three other organizing principles: a 'medical logic', an 'activation logic' and an 'aftercare logic'. We discuss these findings in light of critical disability studies and argue for a more nuanced understanding of disability in social work practice with care leavers. Highlighting disability rights and going beyond diagnosis and categorisations of disabled people can challenge a medical model approach to service provision.
Journal of Intellectual Disability Research, 2010
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 subst...