Health Disparities & Intellectual Disability

This project is complete and these resources are no longer updated.

Understanding the Factors Associated with the Health Disparities Experienced by People with Intellectual Disabilities

There is a growing body of evidence that—when compared to people without intellectual disabilities—people with intellectual disabilities more frequently experience poor health and unmet healthcare needs. However, there is limited scientific understanding about the causes of these disparities. As a result, a systematic approach to studying these disparities and comprehensive national health surveillance for the population with intellectual disabilities are needed (Krahn et al, 2010).

The objective of the Health Disparities & Intellectual Disability project is to inform efforts to (a) improve the capacity of current health surveillance systems to track the health and healthcare of people with intellectual disabilities and (b) increase the effectiveness of health-related practices, services, and programs that influence the lives of people with intellectual disabilities. 

To achieve this overall aim, this project will pursue four specific aims: 

  1. Data Sources. The project will identify the set of valid and reliable data sources that maximize the quality of information (e.g., population-based statistics and research findings), given the needs of the target audience (i.e., public health practitioners, administrators, and researchers) and the strengths and weaknesses of existing data. And conversely, the project will identify ways to improve existing data sources that are currently inadequate for studying the population with intellectual disabilities.
  2. Key Variables. The project will use this subset of existing data sources to identify an array of key variables to facilitate the study of the risk and protective factors associated with disparities between the populations with and without intellectual disabilities. This subset will include dependent variables—selected from the leading health Indicators and/or frequently cited unmet healthcare needs—and independent variables from frequently cited protective factors and risk factors, including personal and household characteristics, the utilization of services, and barriers and facilitators within physical, social, economic, and healthcare environments.
  3. Analyses. The project will use this array of key variables (and corresponding data sources) to develop and estimate empirical models that identify the factors associated with disparities between the populations with and without intellectual disabilities.
  4. Knowledge Translation. The project will disseminate the results of our activities to public health practitioners, administrators, and researchers (i.e., the projects target audience) in a manner that facilitates their efforts to reduce health disparities between people with and without intellectual disabilities and improve data collection. This includes sharing the data itself, conveying the results of our efforts to identify valid and reliable data (e.g., options for improving upon existing data sources), and summarizing the findings of our analyses. Dissemination materials will meet the learning styles of audience members.

The project will produce a chart book and at least four peer-review journal articles, as well as create a new section in the Annual Disability Statistics Compendium focusing on persons with intellectual disabilities.

The Health Disparities & ID project is funded by a three-year, $750,000 grant from the Centers for Disease Control and Prevention.

Project Partners

The project is partnering with the following individuals and organizations for project execution:

  • Joan Hahn, PhD, APRN, Co-Investigator
    University of New Hampshire
    Dr. Hahn be primarily responsible for collecting and synthesizing input from the Disparities Affinity Group of the UNH College of Health and Human Services—of which she and Dr. Houtenville are members. She will also be a co-author on peer-reviewed journal manuscripts, and possibly lead author, which would lead to more than four manuscripts being produced. She will also provide valuable input into the selection of data sources and specification of empirical models.
  • Roberta Carlin, MA, JD, Co-Investigator
    American Association on Health and Disability
    Ms. Carlin, Esq. will be responsible for collecting input from public health practitioners and contribute to the development and distribution of dissemination materials.