One is the Loneliest Number
University of Colorado School of Medicine (CUSOM)
By David A. Ervin, BSc, MA, FAAIDD, Makom and Heather Cassidy, MD
Last year, the esteemed Editor-in-Chief of Helen: The Journal of Human Exceptionality, Dr. Rick Rader, wrote in these pages of his address of the United Nations on the occasion of the 2024 World Down Syndrome Day (Rader, 2024a). The theme of that Day was Health Equity, and Dr. Rader took the occasion to advocate for formal training on intellectual and developmental disabilities (IDD) in medical school. In his address, he asserted the following:
“Medical students don’t have the occasion, the opportunity, or the privilege to greet, meet, interact, communicate, understand or care for a patient with Down syndrome and other [intellectual and developmental] disabilities. We don’t give medical students the opportunity to interact, engage, converse with, or listen to [people with IDD].” (Rader, 2024a)
This is, it turns out, an inconvenient truth and it isn’t a new one. In 2001, then-United States Surgeon General, Dr. David Satcher, observed that “the challenges and rewards of treating individuals with [IDD] are rarely addressed in the training of physicians and other health care professionals” (U.S. Public Health Service, 2001). In 2024—over two decades later—Drs. Michael Ioerger and Margaret Turk (2024) pointed out that the Liaison Committee on Medical Education (LCME) Standards for Accreditation do not show disability as curricular content under Cultural Competence and Health Care Disparities, noting “Disability-related education is therefore often relegated to isolated presentations that focus on changing attitudes rather than building knowledge and skills.” (p. 2041)
At last count, there are 200 medical schools in the United States. For the academic year 2023-2024, just under 29,000 medical students graduated. The vast majority of those newly minted physicians will not have had any intentional, curricular didactic or clinical exposure to people with IDD, and virtually none of them will have had any opportunities to learn in any substantial way about adults with IDD.
In July of last year, at a health advocacy event in the US Congress, a panel of experts, including the same Dr. Rader, spoke to the range of obstacles impeding health equity for people with IDD. In his comments, Dr. Rader again—rightly—pointed out the lack of training for medical students on adults with IDD. On this occasion, however, he threw down this gauntlet: “Not a single one of our 200 medical schools in the US include curriculum-based, required training of students on adults with IDD!” (See also Rader, 2024b.)
He’s right. Mostly.
As it happens, we (the authors) are and/or have been affiliated with the University of Colorado School of Medicine (CUSOM). Beginning in 2017, CUSOM engaged in a substantial review of its curriculum, and included intentionally an examination of where and how disability and, particularly, intellectual and developmental disability, could integrate into it. In 2021, ten (10) hours of disability content were permanently added to the CUSOM curriculum, explicitly including IDD (under Cognitive Disability) hours. As far as we know, this makes CUSOM the bellwether, the first of 200, a trailblazer in placing IDD related content in their 4-year curriculum for all medical students. Core, curricular content. Mandatory for all.
“In 2021, 10 hours of disability content were permanently added to the CUSOM curriculum, explicitly including IDD (under Cognitive Disability) hours. As far as we know, this makes CUSOM the bellwether, the first of 200, a trailblazer in placing IDD related content in their 4-year curriculum for all medical students. ”
More impressively, the CUSOM story that culminated in curricular content on IDD actually dates to 2007 and is a deep and longstanding commitment to health equity. That same year, then-medical student Heather Cassidy, whose extraordinary brother happened to have autism, started a lunch-and-learn series for fellow students that brought community and institutional experts in the field of IDD to the medical school. That series, The Disability Dialogue, persists at University of Colorado Anschutz Medical Campus to this day and has grown to have formal faculty advising and a robust interprofessional student presence inclusive of the dental, nursing, and physician assistant students on campus.
In 2017, the Dean of CUSOM convened a Curriculum Reform Committee, which was divided into subcommittees, one of which was focused on disabilities, including IDD explicitly. That same year, CUSOM was chosen as one of three medical schools in the United States as a grantee of the American Academy on Developmental Medicine and Dentistry’s then-National Curriculum Initiative in Developmental Medicine (now called National Inclusive Curriculum for Health Education Inclusive, or NICHE). With a $50,000 grant, CUSOM built out a set of integrated didactic, experiential and community-based learning modules for its medical students specifically working with and learning from adults with IDD. At that time, CUSOM, Baylor College of Medicine and University of Louisville School of Medicine were the first medical schools in the country to be part of this initiative. Since then, 36 medical schools have been added to the list.
For CUSOM, the die was cast, and within four years it would become the first—and at this writing only—medical school in the country to add IDD to its formal curriculum. It’s mandatory content, for all CUSOM students.
Recent research shows an alarming set of biases among physicians (Iezzoni et al., 2021; Lagu et al., 2022). From a national survey of physicians between October 2019 and June 2020, greater than 82% of physicians rated the quality of life of people with disabilities as worse than people without disabilities, based apparently only on the presence of the disability. Only 18% strongly agree that people with disabilities are treated unfairly in the health system. Eighty percent (80%) strongly agree that understanding people with disabilities is valuable to them as doctors.
At CUSOM, one of the first student cohorts from NICHE grant project were surveyed for perceptions of the impact of their training with people with IDD. Results are encouraging. Students who received specific training with and for adults with IDD were more than twice more likely (2.3x) to rate their training as adequate to developing their comfort in providing medical care for people with IDD; and, students were four times more likely to report feeling competent to provide medical care to a person with an IDD. Students in the cohort expressed unanimous support for the inclusion of IDD into the curriculum. Students valued learning directly from patients with IDD and caregivers about challenges accessing quality and compassionate care. Of the experience, one student wrote, “It was extremely valuable to hear their [people with IDD] perspectives and what they wished they had gotten from the healthcare.”
As in Iezzoni and colleagues’ findings (2021), the vast majority of physicians agree that understanding people with disabilities is valuable. The experiences of students at CUSOM suggest that curriculum-based, integrated learning opportunities deliver a deeper, intimate understanding of adult patients with IDD. A longstanding challenge is now met with a scalable, replicable solution.
Returning to Dr. Rader’s United Nations address, he proposed “that every medical student at every medical school in the world be required to meet and treat individuals with [IDD]. They [the medical students] need to evolve from being sympathetic to being empathetic, from being technocratic to being humanistic, from processing patients to embracing patients…all while applying the latest medical advances, and breakthroughs.”
Dr. Rader, we agree. And, we are delighted to introduce you to the University of Colorado School of Medicine, the first but, we fervently hope, not the last medical school to make curricular and ironclad commitment to doing exactly that.
References
Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Donelan, K., Lagu, T., & Campbell, E. G. (2021). Physicians’ perceptions of people with disability and their health care. Health Affairs, 40(2), 297–306. https://doi.org/10.1377/hlthaff.2020.01452
Ioerger, M., & Turk, M. A. (2024). Addressing ableism in medical education — the Disability Integration Toolkit. New England Journal of Medicine, 390(22), 2041–2042. https://doi.org/10.1056/nejmp2314163
Lagu, T., Haywood, C., Reimold, K., DeJong, C., Walker Sterling, R., & Iezzoni, L. I. (2022). ‘I am not the doctor for you’: Physicians’ attitudes about caring for people with disabilities. Health Affairs, 41(10), 1387–1395. https://doi.org/10.1377/hlthaff.2022.00475
Rader, R. (2024a, July). Dr. Rick Rader Addresses the United Nations: Stepping Up to the Major Leagues. Helen: The Journal of Human Exceptionality. Avail. at: https://helenjournal.org/july-2024/dr-rick-rader-addresses-the-united-nations-stepping-up-to-the-major-leagues
Rader, R. (2024b, August). Three Was Just A Start. Helen: The Journal of Human Exceptionality. Avail. at: https://helenjournal.org/august-2024/three-was-just-a-start
U.S. Public Health Service. (2001, February). Closing the Gap: A National Blueprint for Improving the Health of Individuals with Mental Retardation. Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Washington, D.C.
About the Authors
David Ervin is CEO of Makom, a community provider of home and community-based services and other supports in the Washington, DC region. With 38 years in the field of intellectual and developmental disabilities (IDD), the last 25 of which spent focused on health equity and access to culturally relevant and response healthcare for people with IDD, he's done work in this space around the US and internationally. He is HELEN Journal’s Conscience of the Field Editor.
Dr. Heather Cassidy is an internal medicine physician and medical educator. She practices primary care and geriatrics at Evans Army Community Hospital where she cares for veterans and their families. She is also a volunteer physician with several “safety net” clinics that serve the community including Mission Medical Center, Marian House’s Homeless Clinic, and Springs Rescue Mission.
Dr. Cassidy has been an integral member of the University of Colorado School of Medicine’s Colorado Springs Branch (CSB) leadership team since its launch in 2016. She is the Co-Director of the Colorado Springs Branch’s longitudinal integrated clerkships; she oversees medical students' core clinical education and professional identity development, and empowers community-based clinical faculty in their roles as mentors and teachers. She is the Director of the CSB's Health Equity curriculum, which approaches health equity from a community-engaged lens with an emphasis on community-based service-learning collaborations, and the CSB’s Liaison for Admissions. Her previous roles include Assistant Dean for Community-Based Medical Education for the CU School of Medicine, and Director for Community Engagement for the Colorado Springs Branch.
Heather grew up in Colorado Springs and finds purpose in building community and capacity in the place that formed her.
“We Got This”: The University of Colorado School of Medicine
Rick Rader, MD, FAAIDD, FAADM, Editor-in-chief, Helen Journal
“With the news about The University of Colorado, I could not be more delighted to say I was wrong. From the Department of Medicine, we get an appreciation of how the school has evolved. “Since our humble beginnings with two students, two professors and two rooms on the University of Colorado campus in Boulder in 1883, the Department of Medicine has come a long way.” I could only imagine how proud that foursome would be to learn that the School of Medicine is leading the way and serving as a model for ensuring that the next generation of physicians has the confidence, skills, experience and attitudes that people with disabilities need and deserve from their providers.”
HELEN: The Journal of Human Exceptionality is proud to announce, promote, and celebrate the adoption of a mandated curriculum on the care of individuals with intellectual and developmental disabilities by the University of Colorado School of Medicine.
Over the past several years, I have lectured on the need for medical students to be introduced, early in their training, to the challenges and rewards of caring for this marginalized population. I have typically announced that “none of the medical schools required this training in their clinical programs.” And I was right—until now, when I learned from David Ervin and Dr. Heather Cassidy that the University of Colorado’s School of Medicine, beginning in 2021, had turned the tide and reversed the trend of medical education’s indifference to addressing the medical needs of this population.
My statements about medical education have been based on 115 years of research on how America has educated its physicians. I started with the Flexner Report of 1910.
This was a book-length landmark report of medical education in the United States and Canada, written by Abraham Flexner and published under the aegis of the Carnegie Foundation. Flexner not only described the state of medical education in North America, but he also gave detailed descriptions of the medical schools that were operating at the time. His report led to the closing of half of the medical schools and recommended standards that elevated the entire medical profession. Flexner did not mention “disabilities” in his description of what is “missing” in medical school curriculums. Since 1910, there has been no (I better not say no, how about, “to the best of my knowledge…”) demands for medical schools to require students to become competent in caring for patients with disabilities.
So, with the news about The University of Colorado, I could not be more delighted to say I was wrong. From the Department of Medicine, we get an appreciation of how the school has evolved. “Since our humble beginnings with two students, two professors and two rooms on the University of Colorado campus in Boulder in 1883, the Department of Medicine has come a long way.” I could only imagine how proud that foursome would be to learn that the School of Medicine is leading the way and serving as a model for ensuring that the next generation of physicians has the confidence, skills, experience and attitudes that people with disabilities need and deserve from their providers.
Since 1934, The University of Colorado has adopted the buffalo as their mascot. The name denotes strength, resilience and determination, all the needed qualities for a school to be the first to have taken the “disability curriculum challenge” and become the one in 200 schools to say, “We got this.”