Developing a Health Surveillance System for People With Intellectual Disabilities in the United States

Adults with intellectual disabilities (ID) experience poorer access to quality healthcare and poorer health outcomes than people without ID. They are more likely to live with complex and poorly managed health conditions, have limited access to quality healthcare, receive cancer screenings at lower rates, be obese, have undetected vision and hearing problems, and be at risk for overuse of psychotropic medications. While health disparities appear endemic, there remains a dearth of population‐based information, leading to lack of recognition of this problem by policy makers, public health, and even healthcare professionals. Efforts to address these disparities are insufficient, owing in part to the challenge of documenting the problem's scope and nature. In the U.S., nearly 4 million adults are currently estimated to have ID. In contrast to European countries and despite attention from the U.S. Surgeon General in 2002 on the poor health of people with ID, little progress has been made on obtaining related population‐based data in the U.S. Substantial challenges exist relative to gathering representative data on the population with ID. In response, two international meetings of experts were convened to discuss possible approaches to gathering population‐based health information on people with ID. The discussions included about whom to gather information, what data to collect, and options for how to gather the data. Authors note that efforts to improve health surveillance of people with ID in the U.S. can be enhanced through a multistage strategy. Recent healthcare reform in the U.S. sets a new context for major changes in access to and the way that our healthcare system operates. These changes highlight the need to develop accurate and reliable surveillance systems that can monitor the impact of these changes on this often neglected population.