Aging and intellectual and developmental disabilities: A case study in cross systems collaboration

The population of aging individuals with intellectual and developmental disabilities (IDD) is expanding at rates equal to the wider aging population. Differences in the lifespans of individuals with IDD reaching later life and old age post deinstitutionalization have illuminated the incongruence between the long term care (LTC) and IDD systems, created competition between systems for human resources, exposed inadequacies in policies promoting healthy aging for adults with IDD, and revealed inadequate service models that prioritize the identification of age related concerns for the IDD population prior to a health crisis. Using Bronfenbrenner’s ecological systems theory an instrumental case study was conducted to explore the process of support coordination across the LTC and IDD systems for individuals with IDD experiencing age related health concerns. The Centers for Medicaid and Medicare have established the role of support coordinator as the benchmark in coordinating services for individuals receiving home and community based service waivers. The findings of the study illuminate three primary themes necessary for support coordination: systems collaboration, lived experience, and early aging onset. The study included development of a tool that assesses the age related needs of individuals with IDD beginning at age 40, clarifications of best practices to bridge the gap between the LTC and IDD systems, and the establishment of collaborative relationships with public health clinics offering specialized services to the IDD population with a focus on health promotion and healthy aging practices. These findings have implications for social change in public policy affecting the LTC and IDD systems.