Purpose In the UK, the Children and Families Act 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. The purpose of this paper is to present a research process designed to address these issues. Design/methodology/approach Six disabled young people co-led this participatory research project; for the first time, 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. Findings This paper presents findings from this process, addressing important ethical issues relevant for policy, practice and research, identified through this rights based, collaborative way of working in partnership. Three key issues were identified and are explored here. They include first, tensions between young people becoming leaders and dominant ideas about safeguarding and child protection; second, being empowered through engagement within the project yet restricted in other areas of personal life and, finally, the emotional impact on new researchers of gathering evidence of a continuing lack of autonomy for disabled children and young people. We argue that challenging dominant notions concerning the participation and protection of disabled children is required in order to ensure that they access their right to be decision-makers in their own lives, and to being empowered within research processes. Originality/value This is the first disabled young people-led study to investigate quality and rights for disabled children and young people using this rights-based methodology.
