UIC-based national research center receives $2.5 million grant

Depending on where they live in the U.S., people with disabilities are three or more times more likely to live in poverty than people without disabilities.

This information, and more, is available from ADA PARC (the Americans with Disabilities Act Participation Action Research Consortium), a UIC-based national research center that just received a new $2.5 million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research.

The funding will be used to gather and analyze new data about the participation disparities experienced by people with disabilities; improve and expand the existing website for disseminating that data; and train people from diverse disability communities to use the information as advocates in talking with policymakers.

The participatory research will be done in collaboration with the 10 Americans with Disabilities Act centers that represent all states and territories in the U.S., as well as the ADA Knowledge Translation Center.

“As major civil rights legislation, the ADA has had an impact over time. But we’re able to show that there are still significant disparities that need to be addressed at the national, state and city level,” said Joy Hammel, professor of OT, DHD and RS, who is co-principal investigator with Lex Frieden, disability policy and advocate researcher at the University of Texas Health Science Center at Houston.

The project focuses on disparities for people with disabilities in the three areas related to the ADA: community living, community participation and economic equity.

Through focus groups, town halls and surveys, ADA PARC centers will conduct participatory action research “to check that we’ve got our finger on the pulse of what the biggest issues are in the disability community that they’re facing right now,” Hammel said.

 

UIC collaborators include the Great Lakes ADA Center, led by director Robin Jones, and DHD faculty members Yochai Eisenberg, Sarah Parker Harris and Robert Gould.

Researchers in the UIC College of Urban Planning and Public Affairs are updating and expanding the website and ensuring its accessibility for diverse people and communities.

Right now, the disparities data and website provide information on people with disabilities as compared to people without disability for over 50 different indicators related to the ADA, Hammel said.

For example, website users can compare transportation accessibility in their own community to other communities, as well as to state and national averages. They can compare the number of people with disabilities who live in nursing homes or prisons with those who are in community-based living.

Infographics and scorecards help make the information more easily understandable, Hammel said.

Over the next five years, ADA PARC will study and analyze additional findings specific to people with disability as related to race, ethnicity, age, economic status, gender, sexual orientation and gender identity.

The immediate and long-term impact of COVID-19 for people living with disabilities in the community, and in institutions, will also be included.

The goal of ADA PARC isn’t only to gather, analyze and publish data online. The project will train 200 peer equity navigators: people in the disability community, from all over the country, who will use the information in advocacy with politicians, policymakers, funders and others. ADA PARC will keep track of how the data is used, and its impact in reducing disparities and improving opportunities for societal participation.

The need for community-based participatory research in disability is increasing because the rate of disability is rising, Hammel said, including chronic health conditions like diabetes, pain and cardiac disease, the effects of COVID-19, or a combination of multiple conditions.

A lot of people with disabilities don't know anything about the Americans with Disabilities Act. They don’t identify as having a disability. That’s why it’s important that peer navigators are from the disability community––to let them know what disability means under the ADA, and that they have the right to reasonable accommodations, to live in their community, to work and to participate fully.

The COVID-19 pandemic starkly illustrated the disparities for people with disabilities and the need for projects like ADA PARC, Hammel said.

“The project is right in line with our vision for the college and the university, the focus on community engagement, community participation and social justice issues,” she said. “It helps to highlight these disparities, but also offers innovative ways to address them and make real-life social action and justice-based changes in society.”