Disability-focused career paths can show up in different ways. Whether you are a researcher who studies public health disparities, a medical doctor who treats patients with disabilities or the head of a state-run agency that works to advance health policy initiatives for the disability population — each is important. Although these roles look different on the surface, when you dig deeper, they each share one thing in common.
Activism.
Each of these roles at their core allow a person to show up for people with disabilities — whether that be in a presentation, in an exam room, or at a press conference.
With the release of the NIH Strategic Plan for Disability Health Research Fiscal Years 2026-2030 this year, these advocates are hopeful that meaningful change can occur for the disability community. This increased focus on disability health research could lead to improved healthcare access, better data collection, more inclusive medical training, and stronger support of disability-related public policies and programs, they said.
“Change is slow but this is a big deal and I hope that [the plan] can be a launching point for more progress forward,” said Dr. Alicia Wong, M.D., MPH, a primary care physician for people with disabilities in Colorado and an Assistant Professor of Family Medicine at the University of Colorado Anschutz School of Medicine. “For so long disability has been boxed into the medical model and framed negatively. I appreciate that this is a legitimate effort to acknowledge that fact and to set forth goals to move us beyond that space and into a reality that better reflects the one that people with disabilities live in.”
This plan is years in the making, following great lengths by researchers in the field of disability health research. Dr. Bonnielin Swenor, Ph.D., MPH, is dedicated to the field of disability health research, specifically health disparities relating to disability. She is the Endowed Professor of Disability Health and Justice at Johns Hopkins University and the founding director of the Johns Hopkins University Disability Health Research Center (DHRC). Dr. Swenor was one of the researchers involved in the early stages of work that led to the plan’s development.
“This strategic plan is the next phase in what’s been many many years of push and progress,” Dr. Swenor said. “There was a prior committee…which was tasked with addressing what was a growing issue around the lack of focus across the NIH (National Institutes of Health) on both the inclusion of people with disabilities in research careers as well as the inclusion of people with disabilities in our research itself.”
In December 2022, a report was published by the NIH, called, Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities, of which Swenor was one of the co-chairs. She and her co-chairs submitted their recommendations and then waited patiently for the news on whether their report would be accepted.
“There was unanimous acceptance of our report, which then meant that it was pushed to NIH Leadership to do something about,” Dr. Swenor said. “The strategic plan is the response to the recommendations given in this report.”
Dr. Swenor also contributed to the strategic plan, and served on the NIH Disability Health Research Working Group.
One of the recommendations given to the NIH in the December 2022 report was to formally designate people with disabilities as a health disparity population. The NIH had previously been under the microscope for not designating people with disabilities as a health disparity population, as they have with other subgroups: such as Low Socioeconomic Status, Underserved Rural Populations, Racial and/or Ethnic Minority Populations, and Sexual Minority Groups. In September 2023, those with disabilities were officially recognized by the NIH as a population that experiences health disparities.
“Now the ball is in the court of NIH Leadership, as well as who is making decisions about budgets,” Dr. Swenor said. “That’s what is needed next. This is the framework. This is the structure, so how do we put it into action? Like all things, it will cost money. It needs [financial] support, to actually have traction.”
Another researcher who has spent years in the field of disability health research and advocating for those with disabilities is Dr. Megan A. Morris, Ph.D., MPH, CCC-SLP. Dr. Morris is the Irving Geist Associate Professor of Rehabilitation Medicine, in the Department of Rehabilitation Medicine at NYU Langone Health and an Associate Professor within NYU Langone Health’s Department of Population Health. Dr. Morris is also the founder and director of The Disability Equity Collaborative (DEC). The goal of her research is to improve the quality of health and healthcare services for people with disabilities.
“We were excited when the plan came out,” Dr. Morris said. “To create the plan, there were multiple public meetings where they [NIH] were asking folks to give comments and feedback. I participated in that process so it was exciting for the plan to come to fruition.”
According to Dr. Morris, there are “a growing number, but still a fairly small number of researchers in this area [of disability health research], compared to other marginalized communities and researchers studying their health and healthcare outcomes.”
There are four goals outlined in the strategic plan. The first goal in the plan is Research. The rest are as follows: Workforce, Resources and Infrastructure, and Stewardship.
Dr. Morris shared that the plan does explore key elements when it comes to recognizing structural conditions in healthcare, such as the lack of providing accommodations and negative attitudes.
“The plan recognizes how those external contextual factors can negatively impact the health and healthcare of people with disabilities,” Dr. Morris said.
As of next steps, Dr. Morris says there are a lot of unknowns. Currently, Congress has not allocated dollars towards the funding of the initiatives in the plan and Dr. Morris says the NIH is “shifting.”
“They [the NIH] are doing less of their specific calls, such as, ‘We want a grant about this topic, and more of give us your grant on any topic,’” Dr. Morris said. “That’s NIH-wide, a change that is happening. We are not quite sure how this new priority is going to fit into the changing infrastructure of the NIH.”
When Dr. Morris submits a grant, the grant is peer-reviewed, and it goes to specific staff at a corresponding institute of the NIH. Dr. Morris told me that when she has spoken to staff, they “have been aware of the strategic plan and they are considering it in making their funding decisions.” However, Dr. Morris stresses, “there’s not specific dollars saying, ‘We [the NIH] have $5 million in a pot of money to spend on projects that fall under this priority.’”
Dr. Morris has worked closely with Dr. Wong, a research colleague who has served as a site primary investigator on some of Dr. Morris’ grants for Disability Equity Collaborative. Dr. Wong agrees with the goals and objectives outlined in the strategic plan, but worries about the logistics for implementation.
“Achieving the goals will be difficult and really requires us to address ableism within medicine and academia,” Dr. Wong said. “In thinking about retention and recruitment of researchers with disabilities. For example, there has to be incentives, financial support, and/or policies in place for schools and programs to support trainees.”
On the state level, Willow Baer, the commissioner of the NYS Office for People With Developmental Disabilities (OPWDD) was encouraged by the news of the strategic plan. OPWDD is the largest agency in New York State and serves over 140,000 New Yorkers with developmental disabilities.
“Here In New York, we are very focused on achieving health equity for people with disabilities,” Baer said. “We are very aware here of the gaps that exist in research and access to healthcare. We talk about it in New York all the time, but to see national recognition of the need for systems change and the need for adaptation was really, pretty refreshing. I think the idea that research funding and focus might be prioritized to include people with disabilities is a great step in the right direction — especially at a time when federal policy making in the areas of people with disabilities is increasingly concerning.”
Baer sees this new strategic plan from the NIH having a significant impact on the overall future of disability health research.
“The National Institutes of Health and this strategic plan will presumably shape what gets studied and measured and what future researchers will prioritize, so hopefully that trickles down into what is generally recognized as best practice,” Baer said. “The NIH doesn’t directly run Medicaid or IDD systems like we run here, but it certainly can have a profound influence on the evidence space that shapes public policy and the future of healthcare priorities. I think over time, the report will trickle down into the developmental disability space because we all rely on data to make informed decisions and justify spending. The more reliable and inclusive that data can be, that body of research continues to grow, the more strides we can make to close those health equity gaps for those with disabilities.”
Bonnielin Swenor, Ph.D., MPH (Photo Credit: Will Kirk); Willow Baer, Commissioner, NYS Office for People With Developmental Disabilities; Alicia Wong, M.D., MPH (Photo Credit: Alicia Wong, M.D., MPH); Megan A. Morris, Ph.D., MPH, CCC-SLP.