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The Disability and Carers Service: oral evidence: Wednesday 19 October 2005: Mr Terry Moran and Ms Vivien Hopkin
- Author:
- GREAT BRITAIN. Parliament. House of Commons. Work and Pensions Committee
- Publisher:
- Stationery Office
- Publication year:
- 2005
- Pagination:
- 33p.
- Place of publication:
- London
Disability and Carers Service (DCS) is part of the Department for Work and Pensions. DCS helps disabled people and carers to lead independent lives by administering and delivering, disability benefits, providing advice on benefits, and supporting the Government's commitment to increasing the inclusion of disabled people in society.
Modern times: an ethnographic study on the quality of life of people with a high support need in a Flemish residential facility
- Authors:
- de WAELE Isabel, Van HOVE Geert
- Journal article citation:
- Disability and Society, 20(6), October 2005, pp.625-639.
- Publisher:
- Taylor and Francis
This ethnographic study shows the impact of the care system on clients’ and staff’s life experiences, with the clear distance between these two groups as one of the core issues. Together with a dominant care approach and a well established but subtile system of control, it makes them function in systems that are characterized by an oppressing care culture. Learned helplessness prevents both groups of acting upon quality of life outcomes. The idea of supporting a life of good quality through merely improving these traditional care systems should therefore be considered with caution, and real alternatives should be considered to open this barrier of the oppressing care culture.
My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries
- Authors:
- BROWNE Jan, RUSSELL Sarah
- Journal article citation:
- Disability and Society, 20(4), June 2005, pp.375-388.
- Publisher:
- Taylor and Francis
This paper aims to describe research that examined the views of people with physical disability, living in Australia, of their sexual well-being needs from their own perspective. The study explored the impact their sexual well-being needs had on their relationships with professional carers. A social model of disability was used to understand how sexual well-being is facilitated or denied in community care. It also explored whether clients’ sexual well-being needs could be met without carers or clients ‘crossing the line’. The findings indicate the multiple ways that ‘professional boundaries’ were negotiated between clients and professional carers. The data show that the location of the ‘line’ changed, depending on a range of personal, social, economic and environmental factors. The data also show a gap between the sexual well-being needs of people living with a physical disability and the level of support provided at the social and organisational levels. Suggestions are made for research and practice directions.
Caregivers as managers of subjective wellbeing: a homeostatic perspective
- Author:
- CUMMINS Robert A.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(4), December 2005, pp.335-344.
- Publisher:
- Wiley
This paper proposes that the adequacy of service delivery and caregiving to people who are disabled should be assessed using two criteria. One is the objective circumstance of living, which should be at a standard acceptable to the community at large. The other is a level of subjective wellbeing (SWB) within the normal range. This latter criterion is based on an understanding that SWB is homeostatically managed to lie normally within a narrow range of values. Results found that people who have a disability are more likely than usual to have a fragile homeostatic system because of the additional life challenges imposed by their disability. It concludes that the role of a caregiver is to provide resources and protection against strong threats to homeostasis, thereby ensuring that the person in their care has a normal-range level of SWB.
Elder disability as an explanation for racial differences in informal home care
- Authors:
- LI Lydia W., FRIES Brant E.
- Journal article citation:
- Gerontologist, 45(2), April 2005, pp.2-6-215.
- Publisher:
- Oxford University Press
Adjusting for sociodemographic characteristics and disability levels, this study examines whether differences exist in the structure and function of community-dwelling Black and White frail elders' informal care networks. Data from in-person assessments of Michigan's Home and Community-Based Medicaid Waiver applicants were analyzed. The sample consisted of 936 Black and 3,182 White frail elderly persons. When sociodemographic characteristics were controlled for, racial differences were found in all informal care components except out-of-home chores. Differences in functional components (amount of care, scope of assistance, and personal care) were largely accounted for by disability, whereas racial differences in the structural components (source of care, living arrangement, and sole caregiver) and in-home chores were not. Findings suggest that Black elders are not better off than White elders in the receipt of informal care. Although Black elders receive more informal help, this difference is primarily because of level of disability. This study calls for heightened awareness of disability among low-income Black elders and the potential burden experienced by their caregivers
Fixing the system?: the experience of service users of the quasi-market in disability services in Australia
- Authors:
- SPALL Pam, McDONALD Catherine, ZETLIN Di
- Journal article citation:
- Health and Social Care in the Community, 13(1), January 2005, pp.56-63.
- Publisher:
- Wiley
A qualitative study involving semi-structured interviews with 31 people with disabilities and 32 carers in the state of Queensland, Australia, found that their experience of supportive service delivery had not improved despite reforms of the service delivery system driven by a version of the quasi-market model. Instead of delivering increased consumer choice and improved efficiency in service delivery, users experienced inadequate service supply, service cutbacks and increased emphasis on cost subsidisation and assessment processes. Additionally, few consumers felt that individualised funding arrangements had personally delivered the benefits which the quasi-market model and associated policy paradigm had indicated they should receive. For many consumers, the notion of consumer 'choice' around service provision was fictitious and they felt that any efficiency gains were at the agency level, largely at the consumers' cost. It is concluded that there appears to be no particular benefit to service users of quasi-market reforms, particularly in policy contexts where service delivery systems are historically under-funded.
Overwhelmed
- Author:
- LEASON Katie
- Journal article citation:
- Community Care, 01.12.05, 2005, pp.30-31.
- Publisher:
- Reed Business Information
Intensive caring can eventually lead some parents to harbour murderous thoughts about their own children. The author looks at the problems that can arise and how respite care can help.
Longitudinal changes in the amount of informal care among publicly paid home care recipients
- Author:
- LI Lydia W.
- Journal article citation:
- Gerontologist, 45(4), August 2005, pp.465-473.
- Publisher:
- Oxford University Press
This study examined how the amount of informal care received by disabled elders changes when they are receiving publicly paid home care, and whether formal service use, disability, caregiving arrangements, and demographic characteristics of older adults predict changes in the amount of informal care. Hierarchical linear models were estimated, using 3-year data (12 repeated observations) collected from 888 elderly participants in Michigan's Home- and Community-Based Medicaid Waiver Program. The amount of informal care declined in the beginning period when publicly paid home care was received, and then it stabilized. Changes in activities and instrumental activities of daily living and caregiver residence predicted changes in the amount. The living arrangement and age of elders predicted different patterns of change over time. Neither formal service amount nor its change significantly predicted the amount of informal care. The study concludes informal caregivers do not relinquish caregiving when publicly paid home care is available. Expanding community-based long-term care is a means of fostering partnerships between formal and informal caregivers.
Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004: carers and people with parental responsibility for disabled children: combined draft policy guidance
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2005
- Pagination:
- 28p.
- Place of publication:
- London
The Carers and Disabled Children Act 2000 (“the 2000 Act”) enables local authorities to offer carers support. Services to carers are not defined in the Act, and the local authority may provide any services which, in their view, will support the carer in their caring role.. The Carers (Equal Opportunities) Act 2004 (“the 2004 Act”) seeks to give carers more choice and better opportunities to lead a more fulfilling life by ensuring that carers receive information about their rights under the 2000 Act. The aim of this policy guidance (which is issued under section 7(1) of the local authority Social Services Act 1970 is to set out the Government’s view of the issues for local authorities in carrying on their functions under the 2000 and 2004 Act as they affect: carers who provide or intend to provide a substantial amount of care on a regular basis for another individual aged 18 or over; people with parental responsibility for a disabled child who provide or intend to provide a substantial amount of care on a regular basis for the child.
Dependence, independence or inter-dependence? Revisiting the concepts of 'care' and 'dependency'
- Authors:
- FINE Michael, GLENDINNING Caroline
- Journal article citation:
- Ageing and Society, 25(4), July 2005, pp.601-621.
- Publisher:
- Cambridge University Press
Research and theory on ‘dependency’ and ‘care-giving’ have to date proceeded along largely separate lines, with little sense that they are exploring and explaining different aspects of the same phenomenon. Research on ‘care’, initially linked to feminism during the early 1980s, has revealed and exposed to public gaze what was hitherto assumed to be a ‘natural’ female activity. Conversely, disability activists and writers who have promoted a social model of disability have seen the language of and the policy focus upon ‘care’ as oppressive and objectifying. ‘Dependency’ is an equally contested concept: sociologists have scrutinised the social construction of dependency; politicians have ascribed negative connotations of passivity; while medical and social policy discourse employs the term in a positivist sense as a measure of physical need for professional intervention. Autonomy and independence, in contrast, are promoted as universal and largely unproblematic goals. These contrasting perspectives have led social theory, research and policies to separate and segregate the worlds of ‘carers’ from those for whom they ‘care’. Drawing on the work of Kittay and others, this paper explores the ways in which sociological perspectives can develop new understanding of the social contexts of ‘care’ and ‘dependence’.