Project 174113

This Proposal examines the health, well-being, and social inclusion of school-aged children with severe developmental/multiple disabilities (i.e., intellectual disability/mental retardation, often associated with genetic syndromes, physical disabilities, autism, and problem behaviour/mental health difficulties) and their families. These complex children are often excluded from research studies because of their multiple diagnoses, and they are often not well served by various systems, in spite of their high needs. Furthermore, parents of these children are under tremendous stress. We urgently need an "evidence base" of understanding outcomes for these children and families. Improved understanding will have direct implications for decisions made by families, service providers, and policy makers. Therefore, the first objective of this proposal is to produce a "Report Card" documenting the state of health, well-being, and social inclusion of these children and families, based on a large, nation-wide survey of parents from various locations and backgrounds. In addition to the "Report Card", three focussed studies will examine: (1) families' quality of life, assessed through in-depth interviews; (2) children's participation and social inclusion in the community, assessed from multiple perspectives (including direct observation of children); and (3) service system utilization in adolescents (by means of a detailed survey). The Team includes researchers at different career stages, trainees, parents, clinicians, service providers, and policy makers. The proposal emphasizes knowledge mobilization to health, social services, and education sectors, as well as mentoring of trainees at different stages and in different disciplines in research and practice in health professions.