The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the UK (Franklin and Sloper, 2009). The participation of disabled children and young people, however, has been slow to develop in the UK and concerns have been expressed about progress in this area. Drawing on the results of an ESRC funded, mixed methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one Health and Social Care Trust in Northern Ireland. Results showed that for most disabled children and young people, decision making was firmly grounded in a family centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals they wanted more say and were more confident about expressing their views. However, choices and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for practice and services. The need for a two pronged, social justice approach is recommended as a mechanism to advance the participation agenda forward.