Health of people with intellectual disabilities: Can it be surveilled through existing data?

There is growing evidence that people with intellectual disabilities experience poor health and unmet healthcare needs more frequently than people without intellectual disabilities. However, there is a limited understanding at the population level of the underlying causes of these disparities, and risk factors that could be amenable to public health intervention. Systematic approaches to comprehensive national health surveillance for the population with intellectual disabilities are needed (Krahn et al., 2010). In order to target efforts to reduce disparities, valid and reliable data sources and analytic techniques are critical to identify risk and protective factors associated with health disparities experienced by people intellectual disabilities. Building on a structured review of national, state, or regional data sources for the purpose of health surveillance in adults with intellectual disability (Bonardi et al., 2011), we applied a criteria matrix to identify data sources that both maximize the quality of information and identify an array of key variables to facilitate the study of the factors associated with disparities between the populations with and without intellectual disabilities. Findings of this process will be presented as candidates for us in empirical models to identify the factors associated with disparities. This work informs efforts to (a) improve the capacity of current health surveillance systems to track the health and healthcare of people with intellectual disabilities and (b) increase the effectiveness of health-related practices, services, and programs that influence the lives of people with intellectual disabilities.