In 2008, Alex left school. Support arrangements for people with disabilities left a lot to be desired.
Alex was eligible for funding through the Community Participation Program, but until 2008, this had pretty much meant a disability-specific group adult day centre. Though the concept of “individualised” community participation existed, in practice, where we live, it was mostly just an option on paper that very few had put into practice. In the few cases that did exist it was delivered by the same organisations, dependent on the timetables and staffing of the organisations and not actually individualised anyway as people would go in twos or threes to “activities” in the community. So support was still delivered with set activities in mind rather than evolving naturalistically as a result of an individual’s life, interests and connections.
In 2008 a family managed or (“self-management”) model was piloted and we were fortunate to be able to access that funding arrangement.
Alex’s funding allocation is held by an agency. It performs all administrative functions including pay arrangements for people working in Alex’s support team. The family comes up with a plan for what Alex will be doing, finds the right people to support him, works out rosters and coordinates all communication in the team.The agency has no direct contact with the people we employ except in an administrative capacity. The model is undoubtedly very labour-intensive for the family, but offers the most potential for a naturally evolving, flexible and tailored delivery of supports.
We have invited a range of people into Alex’s “village” to help us think up great possibilities for his life.