Taking on choice and control in personal care and support : the experiences of physically disabled young adults

Summary: Research on self-directed care has focused on older people and adults with learning disabilities or mental health difficulties. This paper reports physically disabled young adults’ experiences of self-directed care. Such work is important because young adults are a ‘minority’ group within adult social care. This, and their still developing life skills and lack of life experience, may have a bearing on their experiences of self-directed care and associated support needs. An exploratory qualitative study using semi-structured interviews investigated this issue. Participants were aged 19-29 years with a range of congenital and acquired impairments. Findings: 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 the 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. Applications: 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. Keywords: self- or consumer-directed support; personalization; adult social care; physical disability; young adults; transition