A review of health surveillance in older adults with intellectual and developmental disabilities

Increasing life expectancy, shifts to supporting people with intellectual and developmental disabilities in the community, their increased vulnerability to poor health, and the need for greater accountability call for more than occasional studies of aging in this population. Ongoing monitoring of health indicators is feasible in various capacities in different jurisdictions. In this chapter, we first situate the literature about aging with intellectual and developmental disabilities in the context of aging in the general population, and identify key indicators for consideration in health surveillance in older adults with intellectual and developmental disabilities. We then report on a population-based study in Ontario, Canada, which confirms earlier reports of increasing numbers of older adults with intellectual and developmental disabilities, premature aging in this population, and expected trends in use of home care and admission to long-term care. The review concludes with recommendations for future surveillance activities in Ontario and beyond. Concerned researchers should partner with knowledge users/decision-makers to maximize the use of electronic administrative and clinical data available to them. In time, the international research community may identify common indicators and methods thereby generating comparators across systems that can further inform policy development.