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Caring for independent lives: geographies of caring for young adults with intellectual disabilities
- Author:
- POWER Andrew
- Journal article citation:
- Social Science and Medicine, 67(5), September 2008, pp.834-843.
- Publisher:
- Elsevier
This paper engages with the emerging disciplinary clash between ‘care’ and ‘independence’ within disability studies by examining the geography of home care for young adults with intellectual disabilities. The care system as a whole is viewed as central to disablist structures within disability studies (see Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. Hampshire: Palgrave Macmillan.). However, despite the theorisation of dependency as being in antipathy to the goals of the disability movement, caregiving at home still continues to dominate community care. The paper attempts to address how family carers are ‘caught-in-the-middle’ between their ‘duty’ to care and at the same time, perpetuating dependency; the reality being that parents have to deal with issues of being overprotective and confronting various social assumptions about disability. It examines the narratives from 25 family caregivers in Ireland who provide personal assistance to young adults with intellectual disabilities.
'It's the system working for the system': carers' experiences of learning disability services in Ireland
- Author:
- POWER Andrew
- Journal article citation:
- Health and Social Care in the Community, 17(1), February 2009, pp.92-98.
- Publisher:
- Wiley
The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semi structured interviews were held with family carers (n = 25) and representatives from national carer organisations (n = 6) in Ireland. These were people caring for an adult (18–30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.