A new NIH program will award nearly $30 million to 10 groups over five years Investigate the impact of the ability on different health outcomes for people with disabilities and to develop strategies to combat these inequalities.
Investigate the studies competence targeting diverse populations, including people with low vision who seek to access maternal health care services and outcomes among Medicaid beneficiaries with intellectual and developmental disabilities.
Born in the early days of the Covid-19 pandemic, when doctors ignored it needs of people with disabilities this project is part of the triage of patients in hospitals recent shift by the NIH to treat the nation’s largest minority group – more than 27% of the US population in 2022 – as a distinct demographic group with unique health outcomes.
“It’s an evolution. As we learn more, we do better,” said Theresa Cruz, director of the National Center for Medical Rehabilitation Research, which will lead the program.
Established in the wake of the Americans with Disabilities Act in 1990, the Center serves as the NIH’s research arm for improving the health of people with disabilities – whether through assistive technology, motor skills retraining, functions or other rehabilitation therapies.
To better understand why the program is addressing this issue now, STAT spoke with Cruz. Before her role at the NIH, Cruz conducted research at the Rehabilitation Institute of Chicago on motor control and gait disorders of the lower extremities after stroke. She also leads the NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative, which advances the research and development of new neurotechnologies.
This interview has been edited for length and clarity.
You’ve never funded a program explicitly focused on ableism in the past – why now?
A year ago, the NIH designated people with disabilities as a population experiencing health disparities. If you do that, you open the door to disability, not as a consequence, but to disability as a demographic aspect. What are the structural factors that contribute to poor health outcomes, similar to other minority groups?
NIH is actually based on a medical model of disability, where disability is the result of disease and injury, and it is usually considered a very negative outcome. That’s incredibly skilled. We now talk about the social model of disability, where disability is a construct that arises from the capabilities of a person and their environment. One model is not better than the other. They both have their goals, they’re both important for us to look at as we’re going to improve the health of everyone, which is our mission.
People with disabilities and disability studies scholars have long talked about a social model of disability. Why is the federal government now moving away from the medical model?
I think a few things have changed the landscape a little bit. I think we are listening a little better to our voters. They have been very vocal about how NIH can prioritize research. And we really appreciate that they communicate with us.
The other thing is that Covid-19 has unfortunately brought some of these issues to the forefront. The HHS Office of Civil Rights was supposed to issue guidance to states and remind them it is illegal to triage based on disability status. That was a very real example of a situation where the medical system did not properly value the lives of people with disabilities, and where negative health outcomes could result from attitudes about disability or access barriers. Because the NIH’s mission is to improve the health of all people, and that includes the health of people with disabilities, this was a logical next step as we move to the more social model of disability.
Can you explain more about how discrimination can affect health outcomes separate from a person’s disability?
When you look at the data on health disparities for people with disabilities, you see things that don’t make much sense to me. Why would someone with low vision or deafness have different maternal outcomes? Or different cancer screening rates for people who use wheelchairs compared to those who don’t? If you look at that, it has nothing to do with the disabling conditions, but everything to do with the barriers and the environment. If you don’t have access to mammography, you may not have access to your screenings or an adjustable exam table. You may not get your smear test. These are things that have nothing to do with the cause of wheelchair use, which is the environment that creates a barrier between health behavior.
If you look at the literature on how health care providers feel about people with disabilities, they will report that they do not know what their ADA responsibilities are or that they do not have the same quality of life for a person with a disability compared to how the person feels about themselves. So if there is a continued diminishment of the person with a disability or assumptions about what he or she wants or about his behavior – if a woman comes in with pelvic pain and you don’t ask about sexually transmitted diseases or the possibility of a pregnancy, because you assume she hasn’t been sexually active, you know that’s a disservice to them. And that is the ability speaking.
How much of this is competency and how much of this is poor training for healthcare professionals who treat people with disabilities?
Ableism is deeply ingrained in our society, so I don’t want to say it’s this group’s fault, or this group’s fault. Before the ADA, it was much more common for people with disabilities to be in homes and confined, not part of society, not by choice. So there’s a long history of this country not treating people with disabilities with the respect and dignity that they deserve. I don’t want to say this is a med school problem.
That said, we need more disabled doctors. We need more disabled researchers to bring that perspective to their work. One of the studies we fund is looking at ways to pursue continuing medical education. Can we do it? How do we do it? How much do we need to do to make a difference? There are a lot of research questions there.
And we can’t address health disparities if you don’t talk to community groups and do community-engaged research. So this opportunity is a way for NIH to connect directly with groups working on disability health care and reducing health disparities on the ground. We hope that we can reward their work and their ideas on how we can break down some of the barriers I mentioned earlier and get people access to the health care they need and deserve.
Researchers and advocates have recently done just that called for better disability data — both demographic data and health data. How does the lack of a codified definition of disability impact this work to try to disentangle ableism in the health context?
My feeling is that I am not here to control who is and is not considered disabled. My goal is to create the research and support the research that will help people regardless of whether or not they identify as disabled. That’s kind of the universal design or the social justice model of disability.
The goal is that we don’t have to rely on check boxes for who gets certain accommodations, that they aren’t based on whatever statute applies, that we have spaces and places and policies and attitudes that enable people with disabilities to do their job. the best and to thrive. I wonder if in ten years I will look back and say that the most influential thing we did was this series of grants. We’ve done a lot of good work over the years, but this is different, this is different.
Why is this different?
We didn’t even use the word “ableism.” The NIH had to learn that.
We first talked about this program with our advisory board probably about 2.5 years ago. We have a committee that advises [the Center]and it includes people with disabilities and advocates. When we first started thinking about this idea, we brought it to them and said, “Is this something we should do? It’s different, but we think it’s important. What do you think?” That’s where we got some of the feedback of, “Yes, you should do this.”
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