Collaborators: Glenn Fujiura, Susan Parish

At the outset of the 21st century, the Surgeon General declared the importance of addressing health disparities for people with intellectual and developmental disabilities (IDD). The absence of consistent and representative data on individuals with IDD prevents us from asking whether the Surgeon General’s initiatives have had an impact. The purpose of this project is to create a data set from which to analyze health outcomes and expenditures for people with IDD.

The National Outcomes Health Indicators project involves a coordinated, multi-center secondary analysis program agenda under the direction of three leading researchers in population studies and I/DD: Sandra Magaña, PhD, Steve Hicks of Social Work at The University of Texas at Austin; Glenn Fujiura, PhD, University of Illinois at Chicago; and Susan Parish, PhD, Brandeis University. The research agenda is the first ever IDD-focused analysis of linked Medical Expenditure Panel Survey (MEPS) data with National Health Interview Survey (NHIS) spanning 16+ years, from 1996 to 2011.

We have published four papers and are finalizing others that have established evidence for health disparities in outcomes, services and expenditures for people with IDD. Findings from these papers are already being used in the 2018 call for proposals from the national Institute on Disability, Independent Living, and Rehabilitation Research.

Funding for this project was made possible by the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT5020-03. The views expressed in written project materials or publications do not necessarily reflect the official policies of the Department of Health and Human Service or imply endorsement by the U.S. Government.