PERSPECTIVES ON RESEARCH
Community and Work Participation Disparities for People with Disabilities
By Vinh Nguyen and Lex Frieden
Fifty-four million people with disabilities and their families and friends celebrated the 25th anniversary of the Americans with Disabilities Act (ADA) on July 26, 2015. Before the ADA was passed, people with disabilities often encountered physical barriers in their communities because buildings and sidewalks were inaccessible. They also faced attitudinal and other barriers from the general public due to commonly held prejudices and misconceptions. The goal of the ADA was not simply to eliminate discrimination on the basis of disability but to integrate people with disabilities in their respective communities so that they could fully participate and contribute to American society. Twenty-five years after the ADA was enacted, how successful have we been in reaching this goal?
A consortium of researchers across the nation is attempting to answer that question by conducting a research study entitled “Community and Work Participation Disparities for People with Disabilities.” Funded by a five-year grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), the study involves a collaboration of seven regional ADA Centers collectively called the ADA Participation Action Research Consortium (ADA-PARC). These ADA Centers are each funded by NIDILRR to provide expert guidance on the requirements of the ADA to the public. Led by Lex Frieden of the Southwest ADA Center at TIRR Memorial Hermann and Joy Hammel of the Great Lakes ADA Center at the University of Illinois at Chicago, ADA-PARC is looking at the degree to which people with disabilities may still experience disparities compared to people without disabilities across a number of measures at the national, state and local community levels.
Benchmarking the Data
One major product of this multifaceted project is an interactive website, adaparc.org, which features data that ADA-PARC researchers have collected and synthesized from existing large datasets like the American Community Survey from the U.S. Census Bureau and statistics from other federal, state and local agencies. In addition to presenting demographics data about the disability population, ADA-PARC benchmarked participation disparities from indicators across three major domains:
- Community living looks at data related to whether people with disabilities are living and receiving care at home as opposed to in institutions. In 1999, the U.S. Supreme Court in L.C. v. Olmstead ruled that people with disabilities have the right under the ADA to live in their communities instead of institutions when it is appropriate.
- Community participation focuses on community features that support people to participate in their communities like access to public transportation, businesses and education. The section also presents other neighborhood features such as the availability of affordable housing and crime and poverty rates.
- Work/economic provides data that indicates whether people are working, the kinds of jobs they have and what their personal economics are like.
These data comparisons are presented on the website in the form of user-friendly maps at the national, state and local level. For example, under Work/Economic, one can see that the average person with a disability has a median income of roughly $20,000 a year while a person without a disability earns about $30,000 in the United States. Texas mirrors these earning averages but in Houston, both people with disabilities at ($19,000) and people without disabilities ($27,000) are earning less than people in the rest of the country, making the disparity slightly less.
Community Advisory Boards
The purpose of the ADA-PARC benchmarks is to provide disability advocates and community planners a baseline from which to measure change in the participation of people with disabilities in their communities and to compare their communities to others. ADA-PARC formed Community Advisory Boards in each member region to review the benchmarks, identify other useful information that could be included on the website, and highlight promising practices that their respective communities are doing.
The Southwest ADA Center formed a Community Advisory Board in Houston that brings together disability advocates and government officials from throughout the area to discuss how they can use the data to better serve the community. A major issue is how a lack of affordable housing due to the rising housing market is forcing people with disabilities to move further away from center of the city to areas where disability resource services are relatively sparse. Agency and community leaders have had to consider relocating services, and Houston Metro took these factors into consideration in a recent redesign of the city’s transit network. The demographic diversity of Houston is also causing challenges in making disability services accessible to people of different cultures.
During the ADA 25th anniversary celebrations, ADA-PARC organized several project progress briefings in Washington, D.C. The briefings were attended by advocates, people with disabilities and representatives from federal agencies. As a result, federal stakeholders like the U.S. Department of Justice are now reviewing and utilizing ADA-PARC data to inform and target their ADA enforcement efforts.
In addition to continuing the work of finding, analyzing and sharing benchmarking data, ADA PARC researchers are beginning to use geo-mapping technology to produce zip code-by-zip code maps of different cities that show where people with disabilities are living and their proximity to resources that serve them, such as bus/rail lines and human service agencies. The results of these efforts will be of particular interest to city planners and housing authorities who are responsible for availability and accessibility of services for their constituents.
Vinh Nguyen, J.D., is legal director of the Southwest ADA Center and project coordinator for ADA-PARC. Lex Frieden directs the Southwest ADA Center and is principal investigator for ADA-PARC.
NOTE: ADA-PARC is now seeking to interview people who have recently moved out of a nursing home/institute or are seeking to do so about their issues and experiences. There is a gap in the literature about the desires and experiences of people who wish to transition to the community. Interested parties may contact Edward Elms at (713) 797-7111
Director, Independent Living Research Utilization
TIRR Memorial Hermann
Professor, School of Biomedical Informatics
The University of Texas Health Science Center at Houston
Vinh Nguyen, J.D.
Legal Director, Southwest ADA Center
Independent Living Research Utilization
TIRR Memorial Hermann