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As director of research at the Council on Quality and Leadership (CQL), Carli Friedman, PhD, studies issues affecting people with intellectual, developmental and psychiatric disabilities. Her research focuses on ableism, personal outcomes and quality of life, Medicaid, home and community-based services (HCBS) and social determinants of health. “Basically,” she says, “I spend a lot of time looking at numbers and words and trying to make sense of them.”
Lately, several major projects have pushed her deeper into examining how structural and interpersonal ableism affects healthcare experiences and outcomes. “A lot of what’s absorbing my attention right now centers on two subcontract grants on ableism from the National Institutes of Health,” she explains.
One of those collaborations is with Drexel University in Philadelphia. The project investigates how OBGYNs’ attitudes and biases influence birthing outcomes for people with intellectual and developmental disabilities (IDD) and for their babies. “We review policy and claims data, and then we connect those findings with provider surveys and interviews,” says Friedman. The five-year project recently entered its second year. It is still in early stages but is poised to shed new light on maternal health disparities.
Her other project is with the University of Washington and the University of Pittsburgh. The researchers are examining both explicit and implicit attitudes towards their clients among rehabilitation providers, including physical therapists and occupational therapists. The study includes an innovative AI component that uses natural language processing to analyze de-identified clinical notes to try to pick out ableist attitudes and beliefs. “We’re in the early stages, but the intent is to look at ableism across healthcare records,” she says, “and how that can impact outcomes as well.”
These projects build on her earlier research, which showed that rehabilitation providers often have levels of bias towards people with disabilities similar to the general population. “Providers internalize ideas from society,” she says. “And the way they’re taught about disability, often from a clinical perspective of something to ‘fix,’ can reinforce problematic ideas.”
The connection between ableism and health outcomes is clear to her. “We know that ableism results in lower-quality healthcare,” she says. “Providers are less likely to make referrals, or they decide different treatments are needed just because they see disability.” These experiences can also influence whether people return for future care. “There’s research showing that when people with disabilities experience ableism from providers, they’re more likely to skip future visits or delay them. That ultimately worsens their health.”
A recent collaboration with a researcher at Rush University in Chicago underscored these patterns. Friedman and colleagues surveyed 2,000 people with disabilities about their healthcare experiences. The responses, she says, were eye-opening. “People described discrimination and demeaning interactions. They also described how those experiences shaped what they did next, whether they internalized it, spoke out, or avoided care altogether,” Friedman says.
In addition to her healthcare-focused projects, she continues to conduct extensive research on HCBS outcomes. A recent analysis tracked outcomes before and after the 2023 HCBS Settings Rule compliance deadline. “Unfortunately, the outcomes are nowhere near where they should be,” she says. “Especially around choice. That is one of the core values of the settings rule. Tracking it over multiple years, there is still a lot of work to do.”
Another study examined demographic disparities in HCBS outcomes. She found that people aged 18 to 24 had significantly worse outcomes than other groups. She attributes this pattern to the upheaval of the transition-age period. The study also revealed poorer outcomes among people with certain mental health conditions, including mood, personality, psychotic, and eating disorders, and among people who received more hours of support. “It shows that just because you’re receiving hours doesn’t mean they’re high-quality or person-centered,” she notes.
Friedman’s path into the field began early. She volunteered as a peer tutor in special education classrooms in middle school. That experience led her to study psychology and disability studies in college. She then pursued graduate training focused on disability, HCBS, and neurodevelopmental disabilities. After completing her master’s degree and PhD and a postdoctoral fellowship in community engagement and knowledge translation at the University of Illinois Chicago, she joined CQL.
Eight years later, she continues to examine how systems, policies, and attitudes shape the lives and outcomes of people with disabilities.