A new NIH program will award approximately $30 million to 10 groups over five years to study the effects of ableism on a variety of health outcomes for people with disabilities and develop strategies to counter these disparities. Assign.
The study examines disability discrimination against several different groups of Medicaid recipients with intellectual and developmental disabilities, including those with low vision who are accessing services and maternal and child health outcomes.
Born in the early days of the COVID-19 pandemic, when doctors ignored the needs of people with disabilities when triaging patients in hospitals, the project targets the country’s largest ethnic minority (more than 27% of the population). It’s part of a recent shift by the NIH to treat the disease. US population in 2022 — as a separate demographic with unique health outcomes.
“It’s an evolution. The more we learn, the better our outcomes will be,” said Teresa Cruz, director of the National Center for Health and Rehabilitation Research, which runs the program.
Established in response to the Americans with Disabilities Act of 1990, the center serves as the NIH’s research arm to improve the health of people with disabilities through assistive technology, motor relearning, and other rehabilitation therapies. I’m doing it.
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To better understand why the program is tackling this issue now, STAT spoke with Cruz. Prior to his role at the NIH, Mr. Cruz conducted research on post-stroke lower extremity motor control and gait disorders at the Rehabilitation Institute in Chicago. He also leads the NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative, which accelerates research and development of new neurotechnologies.
This interview has been edited for length and clarity.
We’ve never funded a program explicitly targeting ableism before, so why now?
A year ago, the NIH designated people with disabilities as a population experiencing health disparities. Doing so opens the door to disability as a demographic rather than disability as a result. What are the structural things that contribute to the poor health outcomes of other minority populations?
The NIH is founded on the medical model of disability, which holds that disability is the result of illness or injury, usually a highly negative outcome. It’s incredible ableism. We now discuss the social model of disability. Disability is a construct that arises from an individual’s abilities and environment. One model is not better than the other. Both have a purpose, and both are important in our mission to improve health for all.
People with disabilities and disability studies scholars have long debated the social model of disability. Why is the federal government now moving away from the medical model?
Teresa Cruz NICHD/NIH
I think a few things changed the landscape a little bit. I think we’re doing a little bit better in terms of listening to our constituents. They have been very vocal about how NIH can prioritize research. And we are very grateful that they communicated with us.
The other thing is, unfortunately, COVID-19 has brought some of these issues to the forefront. The HHS Office of Civil Rights was required to issue guidance to states reminding them that it is illegal to triage based on disability status. This is a very real reminder that health systems do not value the lives of people with disabilities as much as they should, and that negative health outcomes can be a result of attitudes towards disability and access barriers. That was an example. It is the NIH’s job to improve the health of all people, and that includes the health of people with disabilities, so this was a natural next step in moving to a more social model of disability. .
Could you elaborate on how discrimination can affect health outcomes apart from disability?
When I look at the data on health disparities for people with disabilities, I see things that don’t make much sense to me. For example, why do maternal outcomes differ for people with visual or hearing impairments? Or do people who use wheelchairs have different rates of cancer screening than those who don’t? When you look at it, you see that it has nothing to do with the disabled situation and everything to do with the barrier and the environment. If you don’t have access to a mammogram, you may not have access to screening or an adjustable exam table. You may not get a Pap smear. These have nothing to do with the cause of wheelchair use; the environment creates barriers between healthy behaviors.
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The literature on how health care providers feel about people with disabilities shows that health care providers either don’t know what their ADA responsibilities are, or they don’t know how to assess the quality of life of people with disabilities. , the person will report that it is not equivalent to how they feel. So if your assumptions about people with disabilities and what they want and how they behave are constantly being reduced, then when a woman comes in complaining of pelvic pain and you’re worried about a sexually transmitted disease or pregnancy, If you didn’t ask about the possibility, it’s because you assume she has a disability. Even though they aren’t sexually active, they know it’s a detriment to them. That’s what disabilityism is about.
How much of this is ableism and how much of this is inadequate training for health professionals who treat people with disabilities?
Ableism is deeply ingrained in our society, so I’m not trying 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 confined to their homes and not be part of society, not by choice. In short, this country has a long history of not treating people with disabilities with the respect and dignity they deserve. I’m not saying this is a medical school problem.
That being said, we need more doctors with disabilities. We need more researchers with disabilities who bring their perspectives to research. One of the studies we are funding looks at ways to provide continuing medical education. Can it be done? How do you do it? How much do we need to do to bring about change? Research questions abound.
And we can’t address health disparities without talking to community groups and doing community-engaged research. Therefore, this opportunity is a way for NIH to engage directly with organizations working on the health of people with disabilities and reducing health disparities in the field. We hope to reward their work and ideas about how to remove some of the barriers I mentioned earlier and help people get the health care they need and deserve.
Researchers and advocates have recently pushed for improved data on disability, both demographic and health data. How does the lack of a codified definition of disability impact this research that seeks to unravel ableism in the health context?
My sense is that I’m not here to police who is or isn’t disabled. My goal is to create and support research that helps people, whether they identify as having a disability or not. It’s like a universal design or social justice model of disability.
The goal is to ensure that people with disabilities do not have to rely on check boxes to determine who has access to certain facilities, that those facilities are not based on applicable laws, and that people with disabilities have space and space to function as they wish. It’s about securing the location, policies and attitude. To do your best and prosper. Will we be able to look back 10 years from now and say that the most impactful thing we did was this series of grants? We’ve done a lot of good work over the years, but this is different and distinct.
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Why is this different?
I didn’t even use the word disability discrimination. NIH had to learn that.
We first talked about this program with our advisory board probably about two and a half years ago. We have a committee that advises[the center]and it includes people with disabilities and their supporters. When we were first considering this idea, we said to them: It’s different, but we think it’s important. What do you all think? So we got some feedback saying, “Yes, we should do that.”
STAT’s coverage of disability issues is supported by grants from the Robert Wood Johnson Foundation and the Commonwealth Fund. Our financial supporters have no input into any decisions about our journalism.
