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On September 26, Eliseo J. Pérez-Stable, MD, director of the National Institute on Minority Health and Health Disparities (NIMHD), designated people with disabilities as a ‘population with health disparities’ for research supported by the National Institutes of Health. The term applies to groups of people who experience significantly worse health outcomes including higher rates of illness, poorer health and shorter lifespans driven largely by social disadvantages compared to the health status of the general population.
The designation makes available new research dollars for studies that seek to understand and eliminate health disparities that contribute to poor health among people with disabilities. There are more than 67 million Americans with disabilities. They are members of every other social, economic, racial, minority and religious group.
Other NIH-designated health disparities populations include racial and ethnic minority groups, sexual and gender minority groups and people living in underserved rural communities.
“We have known all along that people with disabilities have trouble accessing care and in many cases getting lower quality care,” says Tara Lagu, MD, Professor of Medicine and Director of the Center for Health Services and Outcomes Research in the Institute for Public Health and Medicine in the Northwestern University Feinberg School of Medicine.
Lagu’s research focuses on identifying ways to improve quality of care, access to care and coordinated care for vulnerable patients, including people with disabilities. “There’s been a lot of research in the last 30 years that has shown that people with disabilities get worse care, often can’t make appointments to see doctors, and in some cases are discharged from practices because they have a disability. There are also physical structures that prevent people from entering healthcare settings and policies that prevent people from getting the care they need, and many clinical settings do not have accessible equipment and others lack supports for communication, like sign language interpreters,” Lagu says. “Together, these structural factors and attitudinal barriers likely contribute to worse illness due to chronic disease, more complications, more hospitalizations, and even earlier death. But the fact is, until this moment, we didn't have the funding support from the NIH to study these disparities. This new designation gives us the opportunity to address some of the terrible inequities faced by people with disabilities when it comes to health care.”
Lagu’s prior studies confirm some of these disturbing inequities. In one study, members of focus groups made up of physicians reported being unaware of the requirements of the Americans with Disabilities Act; said they were inadequately reimbursed for accommodations; and that they strategically discharge people with disabilities from their practices or refuse to see them for an initial visit.
In another study of Dr. Lagu’s, 20% of doctors said they would not make an appointment for a patient who used a wheelchair. “There’s strong evidence that some doctors aren’t willing to see patients with disabilities. This likely contributes to the worse outcomes we see in this population.” Lagu plans to pursue newly available funding sources and expects to submit a grant proposal focused on understanding the impact of ableism on health outcomes.
Elliot Roth, MD, an attending physician in the Shirley Ryan AbilityLab Brain Innovation Center, agrees with Lagu that ableism and lack of clinician training has had detrimental effects on people with disabilities.
“The recent designation reflects a reality that people with disabilities have been living with for years,” explains Roth, who is also Professor and Chair of Physical Medicine and Rehabilitation in the Northwestern University Feinberg School of Medicine. “The recognition, at long last, of the system’s inadequacies in providing for the needs of individuals who need the specialized care is an important first step – but only a first step – toward addressing those needs,” he says. “The principles and practices that are needed to provide effective care and support for people with disabilities comes with years of dedicated professional training and experience focused on addressing the needs of people with disabilities. Yet, sadly, many physicians and other health care professionals do not have those specialized knowledge and skills.”
Jae Kennedy, Professor of Health Policy and Administration at Washington State University’s College of Medicine, has been involved in research and advocacy around people with disabilities for decades. He says that while it has been obvious to researchers and the disability community that people with disabilities have worse health outcomes than people without disabilities, research dollars to study these disparities have been hard to come by. “The new funding is just one of the things tied to the new designation,” says Kennedy. “Training and development opportunities for researchers, clinical staff and others are also linked to this designation. And because the NIH is such an enormous funder of academic research, we're also hoping that this change will encourage universities and other grant recipients to start to take disability inclusion more seriously.”
Kennedy has published dozens of papers on health disparities and poor outcomes among people with disabilities and has been part of numerous coalitions and councils pushing for the NIH designation for years, including the Disability and Rehabilitation Research Coalition, a kind of supergroup of disability research organizations.
In early September, the National Advisory Council on Minority Health Disparities, the branch of the NIH responsible for making health disparities designations, recommended that the designation not be given, in part because of the difficulty of defining disability, which they said could cause administrative and budgeting problems since the term could be so broadly applied. Their statement was met with widespread opposition from advocates, researchers, organizations and clinicians.
Kennedy, together with long-time collaborator Bonnielin Swenor, MD, MPH, Director of the Johns Hopkins University Disability Health Research Center, immediately drafted a letter urging Xavier Becerra, the Secretary of Health and Human Services, to reconsider and encourage Dr. Perez-Stable to make the designation. Their letter asserted that the criteria for people with disabilities to be designated a health disparities population had been met. They also stated that withholding the designation was not only based on ableist assumptions, but also undermined current NIH diversity, equity and inclusion initiatives and President Biden’s equity efforts. Finally, the letter noted that there were no people with disabilities on the National Advisory Council on Minority Health Disparities.
The letter went out to the disability and disability research community with the support of Tony Coehlo, former United States Representative, and primary sponsor of the Americans with Disabilities Act. Less than 48 hours later, it was submitted to Becerra on September 26, the 50th anniversary of Section 504 of the Rehabilitation Act of 1973, a national law that protects qualified individuals from discrimination based on their disability.
“We got more than 1,500 signatures endorsing the recommendation that the director of the National Institute on Minority Health and Health Disparities reject the recommendations of his advisory committee and make the designation anyway. And about two weeks after that, that’s exactly what happened,” says Kennedy. “It was kind of a rare victory. Usually, things are much more ambiguous and drawn out than that. Although people say it happened really fast, and it’s great, we've been working on this for a really long time.”
Lagu sees the new designation as a new point of departure for continuing to work to improve healthcare for people with disabilities. “We have a lot of work to do. Now that we have this designation, we have changes to make all along the healthcare continuum,” she says. “We have to change the culture of medicine, we have to change medical education, we have to change clinical training, we have to remove the kind of ableist language that is used throughout health care to preferentially choose non-disabled over disabled people. We cannot continue to perpetuate the medical model of disability that sees disability as something to be fixed. We need to bring the social model of disability into health care and medical education. The social model of disability instructs us to adapt the world to accommodate people with disability, because, for many people with disabilities, their disability is part of their identity.”
Advocates agree that words are important. “We're now in the stage of trying to run up the score a little bit,” Kennedy says, referring to efforts to get the NIH to change what many say is an ableist mission statement.
The current statement says that the goal of the NIH is to apply scientific knowledge "to enhance health, lengthen life, and reduce illness and disability."
“The current statement talks about the reduction of disability as one of its kind of overarching goals, but to people who have disabilities, that can sound a little bit like reduction of individuals with disabilities, or at least the roles of individuals with disabilities and the relegation of them to patient or passive state,” says Kennedy.
The proposed language of the new mission statement would read, "To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”
“It seems like a little change on paper, but it’s a big change,” Kennedy says. “We’ll see what happens.”