2010 RTOI: Health Surveillance of Adults with Intellectual Disabilities

August 17, 2010


RTOI Resource: The United States Surveillance of Health of People with Intellectual Disabilities: A White Paper            
One Year

Level of Funding:

Project Description:
The US public health surveillance systems are unable to report on the health status of one of our most vulnerable populations - adults with intellectual disabilities (IDs). While the health of the general population is routinely monitored through national surveys, the health of Americans with ID is neither systematically monitored nor reported. During the past decade, there have been repeated calls for improved health surveillance of U.S. disability populations, as indicated in two Surgeons General reports (2002, 2005) and a recent Institute of Medicine (IOM) report (2007). As a result, health surveillance of people with disabilities, in general, is improving, but people with ID continue to be excluded from or undetected in population health surveillance. 

Some national surveys address disabilities but fail to identify many of those living with ID. While the CDC conducts systematic, ongoing health surveillance of people with disabilities overall, population-based data collection is needed that narrows the focus to ID in terms of health status, health risks, health services utilization, health care costs, and health outcomes. Given the health and disparity challenges that face this population and their care givers, reliable and comprehensive data are essential to help drive the development of effective policy and the management of health services that will address their identified critical health needs.

Research based primarily on convenience and service samples finds that adults with ID experience a cascade of health disparities resulting in poorer health outcomes (e.g., Horowitz et al., 2001; Surgeon General, 2002; Krahn, Hammond and Turner, 2006). People with ID are more likely to have complex health conditions, as well as less access to quality health care and health promotion programs. Some specific concerns include inadequate  cancer screening, poor management of epilepsy (Bowley & Kerr, 2000) and being at higher risk for other chronic conditions (Janicki et al., 2002), including obesity (Rimmer and Yamaki, 2006), poor vision (Woodhouse, et al., 2004), and mental health problems with potential misuse of psychotropic medications (Lewis et al., 2002).  Other countries are taking steps to better assess and understand the health of their citizens with ID (Ouellette-Kuntz, 2007; Emerson and Hatton, 2008; Walsh, Kerr Lantmane-deValk, 2003), including a consortium of 13 countries of the European Union engaged in the Pomona project (Walsh, 2008). 

Health surveillance in this population is fraught with difficulties.  The disability itself, inherently involving cognitive limitation, presents a difficulty for using survey-based approaches.  Perceived stigma and past discrimination results in a reluctance of many affected individuals from affiliating with terminology associated with the disability.  Personality characteristics may affect the reliability and validity of responses to questions.  Finally, administrative data are not population-based and may present a service population profile that is not characteristic of the population as a whole.

In collaboration with the International Association for the Scientific Study of Intellectual Disabilities (IASSID) and the Association of University Centers on Disabilities (AUCD), CDC's Division on Human Development and Disability invited a panel of experts from Canada, the United Kingdom and across the US with expertise in intellectual disabilities and health surveillance to a workshop to consider solutions to the methodological challenges of conducting health surveillance of adults with intellectual disabilities in the US.  The report of that meeting, The United States Surveillance of Health of People with Intellectual Disabilities:  A White Paper, is available on the CDC website (http://www.cdc.ncbddd/dh/.  The present project is intended to accomplish the first steps identified in the resulting report.  A subsequent stakeholders meeting is planned for late February or early March, 2010.

Study Focus:
The purpose of this study is to conduct the first stages of a multi-stage effort to establish knowledge about the health of adults with intellectual disabilities at a population level.  This study is intended to accomplish the following outcomes:

  • Operational definition(s) of intellectual disabilities that can be used to summarize existing data sources and reports and that might be used or modified for future population surveillance activities on health of people with intellectual disabilities
  • Inventory and succinct summary of information on existing data sources on health of people with intellectual disabilities that can inform understanding at the population-level
  • Critical overview of research and surveillance approaches that examine the health of people with intellectual disabilities by level of disability for a range of health and participation variables (e.g., health status, health behaviors, participation, effects of stigma, quality of life access and quality of health care, health services use) and a range of public health measurement variables (e.g., sampling, surveillance, metrics, policies, cost analyses)
  • Develop sound methodologies for identifying a representative sample of the affected population on whom health variables can be measured.

Evaluation Criteria:

Successful applications must include the following:

  • Describe the approach for developing operational definitions of intellectual disabilities (e.g., consensus conference, analysis of available data sets)
  • Describe the process for identifying data sources and reports.
  • Describe in detail the methods for summarizing information on and from data sources
  • Describe anticipated resulting reports
  • Describe difficulties associated with collecting population-level data and develop appropriate measures for dealing with these difficulties
  • Identify key staff and describe their project roles and responsibilities.
  • Include a detailed project timeline for the 1-year project.

Preferences will be given to applicants who:

  • Demonstrate experience in the topic area (e.g., health, intellectual disabilities) and methods (e.g., population surveillance, administrative data sets)
  • Demonstrate support from agencies, groups, and other collaborators (e.g., participants for consensus panel; access to potential data sets; self-advocates)
  • Have previous experience with successfully completed projects with similar design

It is expected that this project will be exempt research. It is anticipated that this project will not require local IRB approval.

The Letter of Intent (LOI) should demonstrate the researcher has an understanding of the issues involved in defining intellectual disabilities for adult population surveillance, awareness of potential sources for health data on persons with intellectual disabilities, and awareness of the heterogeneity of the population and the diversity of the data sources.

The applicant should clearly describe all aspects of the proposed study, including (but not limited to) the justification for choosing the specific approaches.  If the researcher plans to collaborate with other partners, such as subject matter experts, federal or state agencies, or organizations, the letter should indicate that these partners have been contacted and are willing to participate.