This project used a social action research approach with two groups of Victorian children and young people with intellectual disability aged 9-22 and their parents. The groups conducted research and provided peer support about their experiences with self-directed disability support. The intentions were to build capacity among children, young people and families for the transition to a policy context of self-directed support under the National Disability Insurance Scheme (NDIS) and to build capacity within the disability community for self-direction, strengthen peer support and develop research competence. Three facilitator organisations ran two workshops with each group. Data was generated and collected through discussion, artefacts from the workshops, feedback forms, demographic surveys, notes written by the facilitators and teleconferences with the facilitators.
The findings cover the extent to which children, young people and parents had used self-directed disability support and their thoughts about its future possibilities for them, as well as children and young people’s reflections on their participation in school, work, volunteering, relationships and their aspirations for the future – for children and young people, funding and support were a means to achieving their goals in these life areas. The findings also cover the experience and outcomes of information sharing, mentoring, role modelling and the opportunity for dedicated dialogue and discussion time available in the groups formed for the project.
The project’s findings have policy implications for children, young people and parents’ access to self-directed support options in the future; their control over managing their support; how to better cater to information needs; the importance of peer support, information sharing and opportunities for discussion in developing capacity for self-directed support; and the need to focus decisions about support arrangements on the aspirations of children and young people.
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