Evaluation of Self-Directed Leadership: Parents Creating Participatory Lives with Adults with Disabilities

Abstract

This evaluation was commissioned by Parent to Parent Association, Queensland, and undertaken by a team of researchers from the School of Human Services and Social Work, Griffith University. The purpose of this evaluation was to explore the Self-Directive Leadership (SDL) model; understand how it operates to achieve its objectives; identify its unique features, inhibitors and enablers; and its potential for replication. The SDL is a parent-led collaborative development between families of adult children with disabilities, people with disabilities, and grassroots, private, not-for-profit and government organisations, to create parent led, local solutions for sustainable, participatory, independent living. The SDL is not a service. It can be described in two ways. Firstly, it is a framework for addressing the long term needs of people with disabilities and their families, organising the responses to people’s needs around them through intensive planning and development. Secondly, it describes a way of being, that is, leading self-direction in Queensland. It is a way of describing an approach that builds on a strong community development and leadership value base, and a belief that the full participation of people within their own communities is possible. SDL describes the movement led by parents that enables them to realise their own skills and knowledge and to mobilise their values and hopes of and for their sons and daughters into action by establishing and leading the networks and organisations that created individualised and context-specific ‘life’ choices for their adult children. The SDL can be understood by: evaluating its potential to meet the needs of families and their adult children with disabilities; and locating the unique position it occupies in the range of self-directed personal support models reported in the literature that include carer support, individualised and self managed funding and accommodation. This evaluation focuses on the efforts of a group of parents with adult children with disabilities living in Queensland, Australia. It is the actions of these parents, that is, the setting of their own agendas, decision making, alliance formation, and innovation that have created new possibilities for their sons and daughters and changed their own futures as parents of adult people with disabilities.