Navigating parental involvement in self-managed personal assistance: supporting the self-determination of people with intellectual disabilities

Abstract

This article asks how personal assistants to adults with intellectual disabilities navigate parents’ involvement in self-managed support in ways that prioritise the person’s self-determination. When people with intellectual disabilities self-manage their personal assistance, their parents are often involved in the self-management arrangements. This article draws on four ethnographic case studies from research with people with intellectual disabilities receiving personal assistance through self-managed budgets in Germany and Australia. The case studies were analysed against Manthorpe et al.’s framework of personal assistants’ experience of family relationships in self-managed support. The analysis found navigation required them to channel parents’ power towards prioritising self-determination. Channelling power in ways that benefited the person to exercise self-determination was dependent on personal assistants’ capacity to manage their relationship with parents and whether parents were present during support. Policy and practice need to be cognisant of the assistants’ relationship with parents to achieve the self-determination of self-managers.