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Choice and independence over the lifecourse: final report to the Department of Health
- Authors:
- GLENDINNING Caroline, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2011
- Pagination:
- 43p.
- Place of publication:
- York
Between 2006 and 2011 the Social Policy Research Unit (SPRU) at the University of York carried out a programme of research on choice for disabled and older people who need social care support, and their family carers, called ‘Choice and Independence over the Lifecourse’. This final report for the Department of Health (DH) provides an overview of this programme of research. The account of the research is divided into 3 sections: projects funded from the main DH programme grant; projects funded through SPRU’s ‘responsive mode’ capacity; and other projects linked to the DH programme. An account of the relevance of the research programme to DH policy and its implementation at local levels is also provided. The research conducted by SPRU within its DH-funded programme has, for the most part, been concerned with issues of choice, from the perspectives of users, carers, service providers and managers. At the heart of the programme was a major long-term study of disabled young people, working age adults and older people as their health and other circumstances changed. The report concludes with a list of the published outputs (peer reviewed journal articles, books and reports, research summaries, professional press, and presentations) emerging from this research programme.
Organisation and delivery of home care re-ablement: what makes a difference?
- Authors:
- RABIEE Parvaneh, GLENDINNING Caroline
- Journal article citation:
- Health and Social Care in the Community, 19(5), September 2011, pp.495-503.
- Publisher:
- Wiley
Re-ablement services are a cornerstone of preventive services in England, where many local authorities provide intensive, short-term re-ablement. This study examined the organisation and content of re-ablement services that have the potential to enhance or detract from their effectiveness. Semi-structured interviews were held with senior service managers in five sites with well-established re-ablement services, the observation of 26 re-ablement visits to service users, and a focus group discussion with 37 front-line staff in each site. Contributing factors to the effectiveness of re-ablement services included: service user characteristics and expectations; staff commitment, attitudes and skills; flexibility and prompt intervention; thorough and consistent recording systems; and rapid access to equipment and specialist skills in the team. Factors external to the services which had implications for their effectiveness included: a clear, widely understood vision of the service; access to a wide range of specialist skills; and capacity within long-term home-care services. The authors concluded that more inclusive intake services suggested that outcomes would be considerably lower for service users who have more limited potential for independence.
Choice and change: disabled adults' and older peoples' experiences of making choices about services and support
- Authors:
- BAXTER Helen, RABIEE Parvaneh, GLENDINNING Caroline
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2011
- Pagination:
- 4p.
- Place of publication:
- York
This study explored the experiences of disabled people of working age and older who were likely to have to take frequent decisions because of their changing health status. Thirty working age and older people with fluctuating conditions and twenty with the recent sudden onset of severe impairments were recruited to the study from diverse backgrounds across England; around two-thirds remained in the study after three years. Participants were interviewed on at least three occasions between 2007 and 2010, to explore recent experiences of making choices about services including: the information and advice people sought; the options considered; the factors taken into account; the outcomes of these choices over time; and the roles played by family, friends and professionals in the choices that were made. Fifteen ‘significant others’, reported as having played an important role in a particular choice, were also interviewed. Data were analysed to identify common and contrasting patterns. Analysis addressed specific questions and drew wherever possible on data from all interview rounds to maximise the longitudinal dimension of the study. Key findings include that choice is important in maintaining health, independence and identity, but that exercising choice can be limited by lack of information or acceptable options. Implications for professionals are summarised.
Dartington review on the future of adult social care: what can England learn from the experiences of other countries?
- Author:
- GLENDINNING Caroline
- Publisher:
- Research in Practice for Adults
- Publication year:
- 2010
- Pagination:
- 24p., bibliog.
- Place of publication:
- Dartington
This paper examines the potential future funding and delivery of adult social care by investigating the experiences of other advanced welfare states, including Denmark, Netherlands and Japan. In 2008 the English Government announced consultation on the future funding and delivery of care and support for disabled adults and older people. A Green Paper was published which suggested a number of potentially radical changes to adult social care and a further period of consultation was announced. However, these debates are also much longer standing. Despite projections of demographic change, particularly future population ageing, this on-going consultation suggests that politically acceptable and economically sustainable solutions are hard to find. If central government becomes responsible for deciding on the levels of resources allocated to individual service users, then it would be unfair to expect local authorities to contribute resources from local council tax – central government would become responsible for raising all the resources for social care, from taxation and insurance mechanisms; a move entirely consistent with reform elsewhere in the world.
Individual budgets: lessons from early users' experiences
- Authors:
- RABIEE Rarvaneh, MORAN Nicola, GLENDINNING Caroline
- Journal article citation:
- British Journal of Social Work, 39(5), July 2009, pp.918-935.
- Publisher:
- Oxford University Press
Within the context of modernization, there has been a trend towards ‘cash-for-care’ schemes designed to bring choice and control closer to the service user. In England, Individual Budgets (IBs) are being piloted, with the aim of promoting personalized support for disabled people and other users of social care services. This paper reports on the experiences and outcomes of early IB users two to three months after first being offered an IB. The users included adults with physical/sensory impairments, learning difficulties, mental health problems and older people. Semi-structured interviews were carried out with nine service users and five proxies. The findings suggest that IBs have the potential to be innovative and life-enhancing. However, achieving this potential in practice depends on a range of other factors, including changes in the routine practices and organizational culture of adult social care services and ensuring users have access to appropriate documentation and support. Any conclusions drawn from the experiences of these early IB users must be treated with caution. The findings nevertheless indicate some of the issues that will need to be addressed as IBs are implemented more widely to replace conventional forms of adult social care provision.
Increasing choice and control for older and disabled people: a critical review of new developments in England
- Author:
- GLENDINNING Caroline
- Journal article citation:
- Social Policy and Administration, 42(5), October 2008, pp.451-469.
- Publisher:
- Wiley
This paper critically examines new policies currently being implemented in England aimed at increasing the choice and control that disabled and older people can exercise over the social care support and services they receive. The development of these policies, and their elaboration in three policy documents published during 2005, are summarized. The paper then discusses two issues underpinning these proposals: the role of quasi-markets within publicly funded social care services; and the political and policy discourses of consumerism and choice within the welfare state. Despite powerful critiques of welfare consumerism, the paper argues that there are nevertheless very important reasons for taking choice seriously when considering how best to organize and deliver support and other services for disabled and older people. A policy discourse on consumerism, however, combined with the use of market mechanisms for implementing this, may be highly problematic as the means of creating opportunities for increased choice and, on its own, risks introducing new forms of disadvantage and social exclusion.
Carers' roles in personal budgets: tensions and dilemmas in front line practice
- Authors:
- MITCHELL Wendy, BROOKS Jenni, GLENDINNING Caroline
- Journal article citation:
- British Journal of Social Work, 45(5), 2015, pp.1433-1450.
- Publisher:
- Oxford University Press
Adult social care in England emphasises the service and support preferences of disabled and older people. Personal budgets play a central role in this development. Carers in England have also secured rights to assessment and support in their care-giving roles. However, these policies have developed largely separately, with little consideration of the interdependencies between disabled and older people and their carers. There is limited evidence detailing current practice. This paper explores current practice, particularly how far social care practitioners recognise and balance the needs and interests of service users and carers, especially those with cognitive and/or communication impairments. The paper reports findings from nine qualitative focus groups (forty-seven participants) conducted in 2012 with practitioners involved in service user personalisation and carer assessments from older people and learning disability teams across three English authorities. Findings indicate inconsistencies in practice. Although practitioners felt they sought to involve carers, practices varied between authorities, teams and colleagues in the same team. Clear and timely links between processes for service users and carers were absent. Practice was discussed most frequently around service user assessments; other stages of personalisation appeared ad hoc. Areas of confusion and tension are identified. Future policy and practice developments and challenges are also considered. (Publisher abstract)
Choice: what, when and why? Exploring the importance of choice to disabled people
- Authors:
- RABIEE Parvaneh, GLENDINNING Caroline
- Journal article citation:
- Disability and Society, 25(7), December 2010, pp.827-839.
- Publisher:
- Taylor and Francis
This paper reports evidence from an ongoing qualitative longitudinal study into the realities of exercising choice about support and related services as experienced by disabled and older people and their families. Findings are reported from the first round of interviews, conducted in 2007-08, with 27 young people (aged 13-21) with degenerative/progressive conditions and 34 of their parents, 30 adults and older people with fluctuating support needs, and 20 adults and older people who had recently experienced the sudden onset of a disabling condition. There was considerable diversity among each of these groups in terms of gender, ethnicity and household composition. Key findings are discussed under the headings of healthcare, equipment, housing and adaptations, education/training, social care, employment, and leisure and transport. Almost all respondents felt that having choice was important, however, this is only meaningful if the choices are ‘real’. The choices considered to be important and the way choice was prioritised was shaped by the respondents age and the nature and severity of their condition and also by previous experience of services, future expectations, the availability of information, individual preferences, family responsibilities and the role of others providing support. The importance of learning over time and how this can shape experiences of choice making was also highlighted. Implications of the findings for policy and practice are discussed.
Care provision within families and its socio-economic impact on care providers across the European Union
- Authors:
- GLENDINNING Caroline, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2009
- Pagination:
- 4p.
- Place of publication:
- York
This is summary of a study that aimed to compile evidence on: the prevalence of long-term informal care-giving within a family setting to dependent family members or relatives in various EU countries, focusing on the most ‘heavily burdened’ carers; the socio-economic impact of care-giving on the households of family carers; and measures aimed at alleviating burdens on family carers by supporting them in the provision of care and/or compensating for the adverse socio-economic consequences of care-giving. The study used existing national and transnational sources of data, including official statistics and published primary research. Burden and socio-economic impacts of carers of older people and non-older people are discussed in separate sections. Policy and practice measures designed to support carers, rated according to the robustness of evidence also included.
Care provision within families and its socio-economic impact on care providers: report for the European Commission DG EMPL negotiated procedure VT/2007/114
- Authors:
- GLENDINNING Caroline, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2009
- Pagination:
- 147p., bibliog.
- Place of publication:
- York
The aims of the study were to compile evidence on: the prevalence of long-term informal care-giving within a family setting to dependent family members or relatives in various EU countries, focusing on the most ‘heavily burdened’ carers; the socio-economic impact of care-giving on the households of family carers; and measures aimed at alleviating burdens on family carers by supporting them in the provision of care and/or compensating for the adverse socio-economic consequences of care-giving. The study used existing national and transnational sources of data, including official statistics and published primary research. Burden and socio-economic impacts of carers of older people and non-older people are discussed in separate sections. Policy and practice measures designed to support carers, rated according to the robustness of evidence also included.