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Taking on choice and control in personal care and support: the experiences of physically disabled young adults
- Authors:
- MITCHELL Wendy, et al
- Journal article citation:
- Journal of Social Work, 17(4), 2017, pp.413-433.
- Publisher:
- Sage
This article reports physically disabled young adults’ experiences of self-directed care. The study carried conducted semi-structured interviews with young adults aged 19-29 years with a range of congenital and acquired impairments. The results found many aspects of interviewees’ experiences of self-directed care appeared to be influenced by their limited life experience, the fact they are still developing life-skills and are a minority group within adult social care. Interviewees identified their lack of life experience and self-confidence as making them cautious in assuming responsibility for their care arrangements and, typically, their desire for on-going parental support. They also believed their age and life stage contributed to difficulties managing carers and PAs. Preferences around characteristics of carers/PAs were influenced by their age and desire to integrate into mainstream activities. Information provided by statutory services did not (fully) acknowledge that some users were young adults. Compared to other physically disabled users of adult social care, young adults’ under-developed life-skills and lack of life experience influences their experiences as users, and the support they needed to assume control of their care arrangements. Tailored information and support for this ‘minority group’ is required. (Edited publisher abstract)
Taking on and taking over: choice and control for physically disabled young adults
- Authors:
- MITCHELL Wendy, et al
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2015
- Pagination:
- 4
- Place of publication:
- London
Summarises the findings of a study on approaches to supporting physically disabled young adults to achieve their preferred levels of control over care and support arrangements. The study took place between July 2012 and January 2014 and involved semi-structured interviews with young adults, parents and social care professionals. It examined physically disabled young adults experiences of managing their care and support arrangements and explored how they can be better supported. Key findings and practice implications are included. While welcoming the opportunities afforded by personalised approaches within adult social care, almost all the young adults described feeling daunted by the associated responsibilities, with managing personal assistants/carers consistently identified as the most difficult aspect of having a Direct Payment. Young adults found information from statutory services was typically targeted at other audiences, for example, older people and only a minority believed transition planning/support services had played a significant role in preparing them for taking on a Personal Budget. Social workers with more experience of working with young adults identified specific issues that need to be accommodated including: young adults’ relative lack of life skills and experience; young adults’ preferences regarding parental involvement; and addressing parents’ support needs. (Edited publisher abstract)
Personalisation briefing: implications for occupational therapists in social care
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2010
- Pagination:
- 5p.
- Place of publication:
- London
This briefing examines the implications of the personalisation agenda for occupational therapists. Personalisation for occupational therapists in social care means: understanding and embracing the social model of disability; providing choice, control and a person-centred approach to assessment/review and delivery of support and services. A number of brief case studies illustrate the ways in which occupational therapists can support personalisation.
Consumer-directed personal assistance and 'care': perspectives of workers and ventilator users
- Authors:
- GIBSON Barbara E., et al
- Journal article citation:
- Disability and Society, 24(3), May 2009, pp.317-330.
- Publisher:
- Taylor and Francis
'Consumer-directed personal assistance' has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer-directed assistance gets played out in practice. A qualitative study was conducted to explore the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of 'independent living' embedded in 'consumer-directed personal assistance', how this was understood and enacted varied considerably. Narrow interpretations focused on the task-oriented aspects of PSWs' work, while broader interpretations included interpersonal aspects of care, respect and mutuality. The authors discuss how a conceptualisation of consumer-directed personal assistance can be elaborated to accommodate a notion of 'care' while retaining the core tenets of the independent living philosophy.
Delivering personal budgets for adult social care: reflections from Essex
- Author:
- OFFICE FOR PUBLIC MANAGEMENT
- Publisher:
- Office for Public Management
- Publication year:
- 2010
- Pagination:
- 9p.
- Place of publication:
- London
Essex County Council (ECC) has commissioned a three year study to investigate the impact of personal budgets taken as cash payments by older and disabled people and their families. This paper reflects on some of the issues raised through face-to-face interviews, conducted between November 2009 and January 2010, with 46 older and/or disabled people who were receiving cash payments and/or interviews with their relatives. In addition four interviews were conducted with older service users whose personal budgets were being managed by the council. The majority had only been receiving cash payments for a couple of months at the time of interview. Generally service users reported positive outcomes. The predictors of take-up of self-managed budgets appeared to be the confidence of service users, based on their own sense of rights, their skills and support available from close relatives and wider social networks. For older service users and those with learning disabilities family members often played a central role in making the initial decision about whether to opt for cash payments. Findings suggested that frontline staff may be making implicit assumptions about which service users are capable of managing cash payments which may influence what choices, if any, are offered. A lack of clarity was found about what is meant by ‘choice and control’ leading to open interpretation by individual frontline staff. The importance of ensuring frontline staff are clear about choice and control and confident in explaining the principles underpinning self-directed support is stressed.
Paying the piper and calling the tune: power and the direct payment relationship
- Author:
- LEECE Janet
- Journal article citation:
- British Journal of Social Work, 40(1), January 2010, pp.188-206.
- Publisher:
- Oxford University Press
This paper provides empirical evidence from original research, which investigated the impact on the support relationship of the direct employment of workers, by direct payment users. The study used a grounded theory approach, with questionnaires to measure job satisfaction and stress, and in-depth interviews with respondents. It explored and compared the experiences of eight direct payment relationships with eight traditional service delivery homecare relationships. The research reveals the importance of the concept of power in helping us to understand the effect of direct employment and, based on this research, makes some suggestions for policy and practice.