Intellectual Disability Surveillance Efforts

CDC/NCBDDD, with assistance from the Association of University Centers on Disabilities, convened a meeting in September 2009 to consider the feasibility of conducting population surveillance of the health status of adults with ID. From this meeting, key questions for pursuing an action plan emerged.  Subsequent efforts to identify they relative health status of adults with intellectual disability, the major health risks they face, how these risk vary for different subgroups of the population, and how access and quality of health care relate to health outcomes for this population have been undertaken.  Below is an overview of these efforts.

Meetings

May 23-26, 2011
Washington, DC, United States
More Information
Three interconnected meetings focusing on the health needs of persons with intellectual disabilities. 
1. Health Surveillance of People with Intellectual Disabilities: What is there?  What is possible?
2. Health Professional Education in Intellectual and Developmental Disabilities
3. State of Science Conference on Lifespan Health and Function of Adults with Intellectual and Developmental Disabilities: Translating Research into Practice

February 26, 2010
Washington, DC, United States
Meeting Materials
A second working meeting of representatives from government and research and advocacy communities, each involved in ID issues, was held in February 2010 to identify approaches to implementing the action plan. It was attended by 70 representatives of federal agencies, researchers, and advocates. Attendees summarized key issues related to surveillance for people with an ID.

September 10-11, 2009
Kingston, Ontario, Canada
View Photos
The Centers for Disease Control and Prevention's National Center on Birth Defects and Developmental Disabilities, in collaboration with the Association of University Centers on Disabilities (AUCD), convened a meeting in September 2009 to consider the feasibility of conducting population-based surveillance of the health status of adults with an ID. Results of the meeting are summarized in a white paper.

2010 Research Topic of Interest on Health Surveillance
Project Overview
This study will establish a solid foundation for feasible, effective and sustainable activities that describe the health of adults with intellectual disabilities in America. It will build on significant effort to date 5 to gather and catalogue health indicators in the population of adults with ID, both to provide methodologically sound investigation of health disparities as well as to establish accurate and valid benchmarks for health improvement in this population.  The University of Massachusetts's Center for Developmental Evaluation and Research (CDDDER) and the Human Services Research Institute (HSRI) will collaborate to develop foundational work to enhance health surveillance of adults with intellectual disability.

Documents
The US Surveillance of Health of People with Intellectual Disabilities: A White Paper [ ,160KB]
A White Paper from the Centers for Disease Control and Prevention (CDC) / National Center on Birth Defects and Developmental Disabilities (NCBDDD) Health Surveillance Work Group which met in Kingston, Ontario, Canada, September 10-11, 2009 includes questions for pursuing an action plan for addressing the surveillance of the health status of adults with intellectual disabilities that arose out of a meeting convened by the CDC and the Association of University Centers on Disabilities (AUCD).

Health Surveillance of Peoples with Intellectual Disabilities: Results of a Working Meeting [ ,64KB]
To identify approaches to implementing this action plan, a follow-up meeting of representatives from government and research and advocacy communities, each involved in ID issues, was held in February 2010.