From Tokenism to Transformation: Relational Guiding Principles for Genuine Co-Design with Young People with Disability Through a Critical Disability Lens

Co-design is a term commonly used to describe involving people with lived experience in program, policy, and research design and its outcomes. However, the implementation of co-design is inconsistent due to a lack of an agreed-upon definition, framework, and set of principles for application. In this paper, the co-authors, as practising policy advocates and co-designers, aim to develop a set of guiding principles for genuine co-design with children and young people with disability in Australia. The paper first synthesises the existing Australian evidence from youth and disability scholarship, best practice approaches, and case studies of co-design projects recently undertaken where the co-authors are based at Children and Young People with Disability Australia, and then validates this evidence base through collaborative autoethnographic reflections of the co-authors’ collective experience in a co-design team. Drawing together themes and insights from this process, we propose four relationally driven guiding principles for genuine co-design that can be applied in Australian as well as international settings: 1. personalised: building trust and safety over time; 2. holistic: embedding co-design across the project lifespan; 3. reflexive: considering and sharing power; and 4. inclusive: prioritising accessibility and diversity. We end with final critical reflections on addressing power relations and ableist structures in genuine co-design with children and young people with disability.