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Family carers managing personal budgets for adults with learning disabilities or autism

Turnpenny, Ágnes, Rand, Stacey, Whelton, Beckie, Beadle‐Brown, Julie, Babaian, Jacinta (2021) Family carers managing personal budgets for adults with learning disabilities or autism. British Journal of Learning Disabilities, 49 (1). pp. 52-61. ISSN 1354-4187. E-ISSN 1468-3156. (doi:10.1111/bld.12348) (KAR id:83385)

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Official URL:
https://dx.doi.org/10.1111/bld.12348

Abstract

1.1 Background: There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well‐being. 1.2 Methods: This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi‐structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. 1.3 Results: Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as “complex needs.” The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a “professional.” The fifth and final theme, mixed emotions, describes the impact on the subjective well‐being of carers. 1.4 Conclusions: Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self‐directed support and greater well‐being, and are sustainable arrangements.

Item Type: Article
DOI/Identification number: 10.1111/bld.12348
Uncontrolled keywords: adults with learning disabilities, complex needs, direct payments, family carers, personal budgets
Subjects: H Social Sciences
Divisions: Divisions > Division of Human and Social Sciences > School of Psychology
Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Personal Social Services Research Unit
Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Tizard
Depositing User: Stacey Rand
Date Deposited: 12 Oct 2020 10:46 UTC
Last Modified: 02 Dec 2021 12:25 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/83385 (The current URI for this page, for reference purposes)
Turnpenny, Ágnes: https://orcid.org/0000-0003-4889-5993
Rand, Stacey: https://orcid.org/0000-0001-9071-2842
Beadle‐Brown, Julie: https://orcid.org/0000-0003-2306-8801
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