From left: Kiki Schmalfuss, Kelsey Biddle, and Lilly Montesano Scheibe. Image: Gretchen Ertl
During her first year at Harvard Medical School, MD student Lilly Montesano Scheibe learned that troubling symptoms she had been experiencing were caused by narcolepsy with cataplexy, a neurological condition that causes overwhelming daytime sleepiness and sudden loss of muscle control.
The physician who made the diagnosis knew Montesano Scheibe was a medical student and told her she should look up the condition on the physician resource UpToDate. The doctor also commented that it would likely negatively affect Montesano Scheibe’s planned career.
The lack of information and treatment plan left Montesano Scheibe feeling scared and alone, and she was dismayed to have her future in medicine called into question.
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Montesano Scheibe happened to know of a classmate with narcolepsy, Kelsey Biddle. When Montesano Scheibe reached out, Biddle counseled her on how to manage the condition, connect with the School’s Office of Disability Services, and advocate for herself.
“But it shouldn’t be luck” whether someone gets access to the resources they need, Montesano Scheibe said. “There should be a community at a medical school. There should be a system.”
And physicians, she added, should be able to empathize and connect meaningfully with patients with disabilities.
At HMS, Montesano Scheibe and Biddle have become part of a cadre of faculty, staff, and students working to improve MD training on caring for patients with disabilities and to create an environment where aspiring doctors with disabilities — including disabilities that aren’t immediately noticeable to others — are well supported.
These efforts could help to increase the number of doctors prepared to provide the best care possible for what the National Institutes of Health recognizes as the largest minority population in the country.
Training gaps
One in four Americans lives with a disability, but according to a recent study, only around half of medical schools provide any measure of disability education. Most of the instruction that is provided is limited to a single session or stands apart from the main curriculum, said Dorothy Tolchin, HMS instructor in physical medicine and rehabilitation, part-time, at Spaulding Rehabilitation Hospital and physician-investigator at the Mass General Research Institute.
This gap has contributed to disparities in the care of people with disabilities. The CDC reports, for example, that one-quarter of individuals with disabilities encounter barriers to health care access.
In addition to a lack of training, another obstacle is the attitude of some clinicians toward patients with disabilities. A 2021 survey of physicians revealed that only 40 percent felt confident in their ability to provide care to disabled people, and only 56 percent strongly agreed that they would welcome patients with disabilities into their practice.
Over the past five years, there has been increased movement to address these disparities. In 2022, the National Council on Disabilities published a policy brief on advancing health equity for people with disabilities, and in fall 2023, the NIH designated people with disabilities a health disparities population, which will provide funds for research to improve health outcomes.
In 2020, at HMS, Tolchin convened faculty and students to form the Disabilities in Medicine and Dentistry Working Group, which led to the development of a comprehensive curriculum on caring for patients with disabilities of all types. The School has now integrated disability coursework throughout its Pathways and Health Sciences and Technology MD programs.
The curriculum includes education about nonapparent or 'invisible' disabilities, which comprise an estimated 10 percent of all disabilities in the U.S. and can take the form of chronic illness, such as diabetes and immune disorders, or conditions that affect a person’s cognition, mental health, or development, such as impairment from an injury, depression and anxiety, or learning disabilities. The longitudinal curriculum is now entering its fifth year, with content across 10 courses and growing.
For example, the Harvard-MIT Program in Health Sciences and Technology (HST)’s Introduction to Clinical Medicine now includes a program in which every student spends time with a family who has a pediatric or adult child with an intellectual developmental disability. In Pathways, as students transition from classroom learning to the principal clinical experience, families, community advocates, and clinicians are brought in to provide perspective on navigating the health care system with a disability. During Pathways professional development course, students learn to identify and mitigate disability-related microaggressions.
“I’m proud of our disability curriculum for extending beyond what is typical at medical schools,” said Tolchin, who runs the curriculum as inaugural director of disability and anti-ableism education at HMS.
The benefits extend beyond patients with disabilities receiving care.
“It has become clear that when students learn about clinical care and inclusive learning environments for individuals with disabilities, they apply those lessons more broadly to the care they provide all patients and the learning environments that we create for everyone,” said Tolchin.
The HMS disability curriculum has been highlighted in a resource for medical schools working to develop their own disability-conscious curriculum.
Improving student support and physician representation
Along with the need for training is the need for more clinicians with disabilities.
Recent studies on a phenomenon known as concordance show that patients, particularly those from marginalized communities, are more satisfied with their care, more apt to follow their treatment plans, and have better health outcomes if they share aspects of their identities — such as ethnicity, gender, and language — with their doctors.
But the percentage of doctors with disabilities is far lower than in the general population, with just 3.1 percent of 6,000 doctors surveyed in 2021 responding that they have a disability. Only 4.6 percent of medical students surveyed in 2019 said they had disclosed a disability to their school, though that represents an increase from 2.7 percent in 2016.
Increasing those numbers could lead to more physicians who are competent in caring for patients with disabilities, but achieving greater representation requires that students with disabilities receive appropriate resources during medical school.
While the Harvard University Disability Resources office provides support for all students with disabilities at Harvard, medical and dental students have unique learning environments. The HMS Office of Disability Services ensures that these students have optimum learning conditions in the classroom and clinic by putting in place services such as testing accommodations, assistive technology, and help with daily activities. Tim Rogers was hired as director after students advocated for the position, said Tolchin. Tolchin and Rogers provide faculty development through the Office of Medical Education on teaching about disability as well as teaching disabled learners.
In 2020, students Jessica Laird and Andrew Chun, with Tolchin as faculty advisor, formed the affinity and ally group HMS Student Alliance for Chronic Illness, Health Conditions, and Disabilities (HACHD). Biddle and Montesano Scheibe are the group’s second generation of student leaders. The group matches interested medical students with residents and faculty with shared lived experience and offers a buddy system, “to take the luck out of finding peer-to-peer connection,” said Biddle.
HACHD also organizes advocacy sessions, such as a workshop on applying for and implementing accommodations, as well as relaxation, community building, and awareness events. HACHD activities are open to all students at HMS and the Harvard School of Dental Medicine.
Prospective students are taking note of the School’s efforts. One of the reasons first-year MD student Kiki Schmalfuss chose to attend HMS was the disability student group. Schmalfuss, who has lived with migraines since childhood, said HMS was not only doing the academic work she is interested in — advocacy, policy, and health justice — but also had social supports in place with HACHD.
“HACHD was a huge factor as I was deciding between schools,” said Schmalfuss. “There’s a student group. There’s a professional group working on disabilities. There are faculty who care about this and could serve as mentors.”
Universal design and cultural change
Advocates at HMS are also increasing support for students with both apparent and nonapparent disabilities through cultural change and universal design, which aims to make medical and academic environments fully accessible to everyone.
Video lectures are one example of successful universal design in the HMS curriculum. These lectures are a primary source of information in the Pathways curriculum, and they are closed-captioned by a professional with knowledge of scientific language. This helps accommodate students with auditory, visual, and other neuro-cognitive disabilities, but it benefits others, too. By turning on closed captions, students can see the correct spelling of terms or improve their comprehension.
As another example, a wellness room is available, providing a private space to help manage a disability, such as administering a medication or taking a nap. It also benefits any individual who needs time in a quiet space to de-stress or rebalance their sense of wellness.
Upping the odds
Montesano Scheibe and Biddle note that there is work left to do. “It’s still really hard,” Biddle said. “This is coming from two people who are pretty vocal advocates.”
But these initiatives mark progress on removing luck from the playing field and replacing it with a strategic plan for advancing medical education and medicine through disability care training, accommodation, and acceptance.
“Someday, I can be the doctor who’s diagnosing someone,” said Montesano Scheibe.
“Instead of saying, you’d better reconsider your whole life plan, I can say, I understand that this is scary, but I’m here to answer all your questions and assure you that we can figure this out.”
