Uncovering inequities facing disabled people of color

November 07, 2023

Older person of color resting chin on a cane

By Alix Hackett

For many people with disabilities, government-funded home- and community-based services (HCBS) are a crucial resource that allow them to live full and independent lives, whether it’s transportation to and from their work in the community, assistance with bathing and other personal care, or help modifying an apartment to be wheelchair-accessible. Through Medicaid, more than $116 billion is spent on HCBS every year, and yet information around how these services are utilized by disabled people of color remains virtually nonexistent.

Teresa Nguyen, director of the recently launched Community Living Equity Center, housed within the Lurie Institute for Disability Policy at Heller, is determined to change that. This past year, her team launched five disability-led research projects aimed at understanding racial equity within HCBS while providing much-needed data to policy- makers and disability advocates.

“We’ve found that race is a pretty difficult topic to link to services, so this research is about creating space for those conversations,” says Nguyen. “I’m hoping the findings will help contribute to policy and program design so that services can become more culturally and linguistically competent for the folks who need them.”

Data Will Illustrate Access and Use of HCBS

All five research projects will focus on how disabled people of color nationwide access and utilize HCBS. For the access portion, Nguyen is eager to find out why an individual might not be using a service that could benefit them: Is it because they aren’t aware of it, indicating a potential disparity in community outreach; is the program or service not available in their language; or is it another reason altogether?

The team’s first published data, scheduled for release in the fall, will be in the form of a dashboard showing who needs HCBS and who actually receives them, stratified by different categories, including race and ethnicity. Other projects underway include a qualitative study involving interviews with disabled people of color who have been institutionalized in nursing homesand then transitioned back into the community, and a mixed-methods project looking at outcomes among individuals who have self-directed their own care by hiring their own service providers.

“The cultural aspects of self-direction are really important,” explains Nguyen. “If you know you’re able to hire family members who can speak your language, that’s a huge help.”

Strategic Collaborations

The center has formed partnerships with external organizations on its two remaining projects: one analyzing existing peer support models that could help people of color access and utilize HCBS, and another developing policy recommendations to improve access to services for those who have been incarcerated.

On every project, Nguyen and her staff are thinking carefully about inclusion and accessibility. Surveys will be administered in person and via Zoom, with language interpretation available, in order to reach the widest possible range of participants. In addition, all five studies are being designed and conducted by researchers who are themselves members of the disability community, lending credibility and knowledge that Nguyen hopes will bolster community participation and lead to richer outcomes.

“Equity is a complex area of research, and the data we’re hoping to collect rely on trust and accessibility of the research team,” she says. “Oftentimes, research is missing that lived experience lens when we interpret our own findings, so I’m really excited for that aspect.”