Enriching our knowledge: State and local data to inform health surveillance of the population with intellectual and developmental disabilities

Over the past 20 years, services and supports for people with intellectual and developmental disabilities (IDD) have changed significantly. The vast majority of adults with IDD now live in home and community-based settings rather than institutions. Data are collected on the IDD population's use of public programs (e.g., Medicaid and Social Security), their places of residence, and their employment status; however, the health status of people with IDD has received much less surveillance attention. While there are many unknowns regarding the health status of people with IDD who live in the community, even less is known about those who live in the community but who do not receive state-administered IDD or other public services. What we know is that many people with IDD are included in the 5% of the U.S. non-institutionalized population requiring help with activities of daily living (ADCs) and instrumental activities of daily living (IADLs) that in 2006 accounted for 23% of all spending in the country and half of all health care spending that year (The Lewin Group, 2010). This is the most recent public data analysis we were able to identify. (author introduction)