We present 2 pieces of research that consider the perspectives of disabled young people and their families in planning for their education and future. A small-scale study compares the expectations and experiences of Transition to Adulthood in Denmark and England for young people with the life-limiting impairment Duchenne Muscular Dystrophy (DMD). Historically, young people with DMD died before they reached the age of twenty years but with current treatments in particular ventilation and cardiac management, adults with DMD are living much longer with some into their forties and fifties. However, services and schools have often struggled to keep up with this improved diagnosis. Face to face semi-structured interviews were conducted with six adults with DMD from Denmark about aspirations and support during their teenage years, and five face to face focus groups took place with twenty teenagers with DMD from England, who were part of a lottery-funded ‘Transition to Adulthood’ project. Findings suggest marked differences in language and aspirations for young people with DMD between the two countries. In Denmark, where the concept of normalisation is embedded in language and services, adults and young people are supported to aspire to normative goals such as employment, residential independence, developing a social life and sexual relationships. Whereas in England, young people with DMD report a lack of expectation from professionals who work with them and little discussion about their future goals., particularly in the areas of employment, independent living and relationships despite SEND legislation that was created to be more aspirational. Disabled children still experience exclusion from education through formal and informal processes, and even children with an Education, Health and Care Plan do not always have their conditions and requirements taken into account in the creation or implementation of their plan. The narratives of learning disabled people in particular have historically been undervalued (Grove, 2015) and the voice of children only usually heard on topics that adults have invited them to speak on (Bradwell, 2019). My research looks to find out from children, young people and parents, what their experiences are in creating their Education, Health and Care Plan, what their involvement was in setting out their support plans and how far their views are reflected in the plan. My research has been planned and imagined with children, young people and parents, and seeks to contribute to the shift in research, towards more participatory, emancipatory approaches, and away from exploitative practices.

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