Resumen de Aspiration, austerity and ableism: to what extent are the 2014 SEND reforms supporting young people with a life-limiting impairment and their families to get the lives they want?
In England, legislation introduced in 2014 to reform support for children and young people with special educational needs and disability (SEND) from birth to 25 years of age has been described as the biggest change in SEND for 30 years. Support now focuses on improved outcomes for young people with SEND, and aims to be more aspirational and person-centred, with the child and family ?at the heart of the process?. This could be viewed as timely for young people with Duchenne muscular dystrophy (DMD), a genetic life-limiting impairment, who, due to improved care and interventions, are now living longer. The aim of this small-scale qualitative study is to explore whether young people with DMD, their parents and schools feel that these reforms are able to support young people with life-limiting impairments to get the lives they want. Findings suggest that parents and children with DMD welcome the new person-centred philosophy, but are still forced to fight for funding and support in a system of reduced resources. Austerity and its role in the narrative of neo-liberalism is also explored.
