Facilitators and barriers to informed choice in self-directed support for young people with disability in transition

Abstract

The objective of this qualitative study was to explore the concept of 'informed choice' in the context of self-directed support (SDS) for young people with disability in transition from child to adult services. SDS is a major policy initiative introduced by the Scottish government to promote personalised services by redefining the relationship between the citizen and the state regarding social care supports. Informed choice is one of the underpinning principles of the Social Care (Self-directed Support) (Scotland) Act 2013. The theoretical approach to the research study was that of critical realism and, in particular, realistic evaluation. The research design used multiple qualitative methods involving secondary analysis of archived qualitative longitudinal interview data, and primary interviews with nine individuals, representing a wide range of stakeholders in Scotland. The study developed hypotheses concerning the facilitators and barriers to informed choice for young people with disability. Factors facilitating informed choice included supportive family and professional networks, advocacy, accessible information and experiential knowledge. Barriers to informed choice were seen to be low expectations, poor collaboration between child and adult services and bureaucratic organisational cultures. SDS is entering the implementation phase of the policy cycle in Scotland and this study will inform emerging policy, practice and future research into personalisation for young people with disability in transition. In particular, the findings point to the need to involve young people with disability at an early stage in choice-making, and to foster self-advocacy skills and supportive social networks. Informed choice for young people with disability needs to be seen as a process over time involving both information and emotions and both need to be supported to ensure successful transitions.