Families' care of their children with severe disabilities in Australia

In Australia, from the 1980s, the processes of de-institutionalization and non-institutionalization have resulted in most children with severe disabilities being cared for at home. Current Australian government policy suggests that care increasingly will be undertaken in the home. The needs of families, then, is an area that requires attention. The findings in this paper are drawn from a series of qualitative in-depth interviews with parents of children with severe disabilities and, in particular, I highlight issues raised in relation to income, work, leisure and social relationships. Typically, despite the provision of formal (and informal) support services, participation in the wider community is limited. I argue that the provision of support services has been inadequate to enable engagement in activities that other families take for granted and that greater social policy attention is warranted.