Health Surveillance for Adults with Intellectual Disability


This study built on significant effort to date 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. 

This grant was a collaboration between CDDER and the Human Services Research Institute (HSRI) to develop foundational work to enhance health surveillance of adults with intellectual disability. Grant activities were completed in 2011. This project was funded through a Research Topic of Interest (RTOI) grant, awarded by the Association of University Centers on Disabilities (AUCD) and funded through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD).


Developing an Operational Definition of Intellectual Disability for the Purpose of National Health Surveillance

Compendium of Health Data Sources for Adults with Intellectual Disabilities

Recommendations for Expanding Surveillance of Adults with Intellectual Disability in the United States

Grant aims and activities

  1. Develop an operational definition(s) of ‘intellectual disability’ to be used in health surveillance activities. This process included a review of national public health datasets (for the general population) for definitions of disability/intellectual disability that would allow monitoring of the health of people with intellectual disability, a review of the definitions used in population-specific datasets (e.g. NCI and Special Olympics) for their applicability to the population beyond the sample population, the facilitation of a national consensus panel review of current data set definitions of ID, and development of priority variable indicators. 
  2. Complete a concise summary of national datasets that capture information about people with intellectual disability, along with a critical review of their applicability for collection of health indicator data. A pdf of the compendium can be viewed through this link.
  3. Make recommendations to ensure health surveillance activities are actually representative of the ID population, given the diverse living situations and conditions that comprise this population. To accomplish this goal, the project team conducted focus groups and structured interviews with community members regarding strategies to outreach and include groups that are typically under-represented in sampling, and completed a statistical modeling and data match feasibility study to establish recommendations for methodologies to gather data on representative samples of people with ID. 


From a national health surveillance perspective, the overall picture of adults with intellectual disability (ID) lacks clarity. Health indicators and outcomes for adults who receive supports are captured in a wide range of population-specific data sets across the country but there is limited public reporting of this data. While anecdotal and population specific studies have repeatedly shown that people with intellectual disability are more likely to experience poor health outcomes, there is very limited capacity in national surveys of population health to describe even basic health indicators in people with ID. As noted by an adult with intellectual disabilities in testimony to the US Surgeon General (2000): “We’re invisible in the data. We can’t make people believe we need more services if we don’t have data to back us up.” 

© 2015 University of Massachusetts Medical School