In the UK, the Children and Families Act (2014) aims to create one assessment process for children with special educational needs or disability, through Education, Health and Care Plans. It also aims for greater participation from children and young people in decisions about their own lives. Current evidence suggests that children’s needs and desires across education, health and social care are not being fully met, partly because adult agendas drive policy, practice and standards of care. Furthermore, little attention is paid to the way in which disabled children and young people are included, either within decisions about their own support or within research processes. This paper presents a research process designed to address these issues where six disabled young people co-led participatory research. For the first time under this new legislation disabled young people had the opportunity to define a research agenda which spoke to what “quality” might look like in planning for their own future and that of other disabled children and young people. Key issues were identified and are explored here, including: tensions between young people becoming leaders/dominant ideas about safeguarding and child protection; being 'empowered' through engagement within the project yet restricted in other areas of personal life; the emotional impact on newly trained researchers of gathering evidence of a continuing lack of autonomy for disabled children and young people.

Dr Geraldine Brady is Associate Professor in Social Work in the School of Social Sciences at Nottingham Trent University, UK. Geraldine’s research programme in child and youth studies is established and internationally acknowledged. She has made notable contributions to research on the social conditions of children and young people and has a long-standing relationship with Stockholm University, having previously been a Visiting Fellow to the Department of Education. Her research on aspects of children’s marginalisation and exclusion has contributed an important perspective on subjective voice, whilst contextualising voice and lived experience within a critical analysis of institutional and policy frameworks which impact on the lives of children. She aims to contribute evidence which can influence the development of socially just policy and practice approaches, with a particular focus on: children and young people’s marginalisation and inequality in the fields of health, social care, education; participatory, visual and creative methodology; the ethics and politics of research with seldom heard groups. Having an applied approach to research, Geraldine’s research informed teaching provides students with insight to policy and practice issues associated with their studies.


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Liz Adams Lyngbäck
Marie-Louise Stjerna