Keeping it in the family? People with learning disabilities and families employing their own care and support workers

Abstract

This article focuses on people with learning disabilities and their families who employ care or support workers using public (government) and/or private (self and family) funds. Such consumer-directed support takes place in England through personal budgets and direct payments. Research and material relevant to these employment relationships were explored in a scoping review undertaken by the authors in 2010. The review identified a small number of studies that involved people with learning disabilities as respondents, although more relied on family carers as proxy respondents. The findings from these studies covered recruitment and administration, employment of family members, training needs, the nature and content of employment relationships, and ending employment. The review observed that employment relationships, practices, and dynamics are surprisingly little explored in the literature and generally unobserved. The article concludes with specific messages from the review for family carers, for people with learning disabilities and for care and support workers.