Integrate disability information into existing surveillance systems

Action Example: By integrating disability status and disability identifiers across surveys, public health professionals will be able to use existing surveillance data sets to compare the health outcomes and health disparities of people with disabilities across multiple data systems.¹⁹

Uncovering the Power of Data: Disability and Health Data Systems (DHDS)

Facilitate the coordination of disability surveillance methods and data.

Action Example: The Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD), with assistance from the Association of University Centers on Disabilities (AUCD), convened a meeting in September 2009 to consider the feasibility of conducting population surveillance of the health status of adults with Intellectual Disabilities (ID). From this meeting, key questions for pursuing an action plan emerged. Other results of the meeting included a whitepaper, a consensus to find better ways to identify the population with ID in the United States, and six “Call to Action” items.

In 2010, the CDC funded a translational research project entitled Health Surveillance of Adults with Intellectual Disabilities.  The study sought to gather and catalogue health indicators in the population of adults with ID, to provide methodologically sound investigation of health disparities as well as to establish accurate and valid benchmarks for health improvement in this population.  A result of this project funding, in 2010 the University of Massachusetts Center for Developmental Evaluation and Research (CDDDER), in collaboration with the Human Services Research Institute (HSRI), developed  Expanding Surveillance of Adults with Intellectual Disability in the U.S. which is a  foundational work to coordinate and enhance health surveillance of adults with intellectual disability.

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