Collaborations to implement effective surveillance: Improving the health status of people with intellectual disabilities

Background: Nearly 4 million Americans are estimated to have intellectual disabilities (IDs). There are significant challenges to accurately identify and reach this population for health surveillance. The Association of University Centers on Disabilities (AUCD) has collaborated with the CDC National Center on Birth Defects and Developmental Disabilities to consider the feasibility of population-based surveillance of the health status of adults with ID. Adults with ID experience poorer health outcomes than people without ID. Without knowing the number, health status, or needs of this group, we cannot plan for services to maximize their health and productivity. Methods: Documenting the problem through improved surveillance and subsequent analyses are the first steps toward change. In 2009 CDC as the only federal agency involved in the effort developed a five-stage plan to guide the effort. AUCD collaborated with CDC to identify additional partners, with federal agency involvement increasing to 10 federal agencies in 2011. CDC documented surveillance issues for health needs of people with ID with two white papers. Results: AUCD and CDC identified the breadth of the network necessary to advance the priority of establishing health surveillance for ID. AUCD convened two working meetings of thought leaders in the field, with involvement increasing from 20 organizations in the first meeting to 70 organizations in the second. Conclusions: Federal partners will convene in May 2011 to establish plans to link data. This will lead to informed design and implementation of interventions for people with ID, with the long term goal of improved health status.