Personalisation policy and parents: The formalisation of family care for adult children with learning disabilities in England

Abstract

This chapter discusses the experience of parenting disabled men and women who have been labelled as having a severe learning disability. It draws on (auto) ethnographic research into the role of Suitable Person in England. It explains the role of Suitable Person in assisting with, and taking responsibility for, all decision-making before exploring a key theme arising from the data: ‘power within partnership working between parents and professionals’. The chapter highlights the risks of parents becoming vulnerable in the role of Suitable Person, and suggests urgent action to change this serious situation in order to ensure disabledadults have choice and control over their life.