During her initial year at Harvard Medical School, MD student Lilly Montesano Scheibe was diagnosed with narcolepsy with cataplexy, a neurological disorder causing extreme daytime drowsiness and sudden muscle weakness. The diagnosing physician advised Montesano Scheibe, a medical student, to research the condition on UpToDate and suggested it might impact her future career adversely.
Feeling isolated and uncertain about her medical future due to the lack of information and support, Montesano Scheibe reached out to a classmate, Kelsey Biddle, who also had narcolepsy. Biddle provided guidance on managing the condition, connecting with the School’s Office of Disability Services, and self-advocacy.
“There should be a community and a system in place at a medical school,” Montesano Scheibe emphasized, highlighting the importance of a support network. She also stressed the need for physicians to connect empathetically with patients with disabilities.
At Harvard Medical School, Montesano Scheibe and Biddle are part of a group of faculty, staff, and students dedicated to enhancing MD training for caring for patients with disabilities and supporting medical students with disabilities, visible or not.
These initiatives aim to increase the number of doctors equipped to provide the best care for what the National Institutes of Health recognizes as the country’s largest minority population.
Training Gaps:
Despite one in four Americans living with a disability, only about half of medical schools offer any form of disability education, and most of that is limited to a single session or separate from the main curriculum. This lack of training contributes to health care disparities, with the CDC noting that a quarter of individuals with disabilities face barriers to accessing health care. A 2021 survey revealed that only 40% of physicians felt confident in treating disabled patients, and just 56% strongly welcomed them into their practice.
Efforts to address these disparities have increased over the past five years. The National Council on Disabilities published a policy brief on health equity in 2022, and in fall 2023, the NIH designated people with disabilities as a health disparities population, unlocking research funds to improve health outcomes.
In 2020, HMS faculty and students formed the Disabilities in Medicine and Dentistry Working Group, leading to a comprehensive curriculum on caring for patients with various disabilities. This curriculum, now in its fifth year, includes education on nonapparent disabilities like chronic illnesses and conditions affecting cognition, mental health, or development.
Enhancing Student Support and Representation:
Increasing the number of clinicians with disabilities is also crucial. Studies show that patients from marginalized communities have better health outcomes when their doctors share aspects of their identities. Yet, only 3.1% of doctors and 4.6% of medical students have disclosed disabilities, highlighting the need for more representation.
Harvard’s Office of Disability Services supports medical and dental students with services like testing accommodations, assistive technology, and help with daily activities. The HMS Student Alliance for Chronic Illness, Health Conditions, and Disabilities (HACHD) connects students with similar experiences and offers advocacy and support.
First-year MD student Kiki Schmalfuss chose HMS partly due to the support from HACHD, reflecting the growing recognition of the importance of disability support in medical education.
Promoting Universal Design and Cultural Change:
Advocates at HMS are also promoting universal design to make environments accessible to all. For example, video lectures are closed-captioned to aid students with auditory, visual, or cognitive disabilities. A wellness room provides a private space for managing disabilities or stress, benefiting all students.
Montesano Scheibe and Biddle acknowledge the ongoing challenges but see these initiatives as steps toward eliminating luck from the equation and implementing strategic plans for advancing medical education through better disability training and support.
“Someday, I can be the doctor diagnosing someone,” said Montesano Scheibe, expressing her aspiration to offer understanding and support to future patients facing similar diagnoses.
Click here to read the original Harvard Medical School article by Bobbie Collins.
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