Disability Curriculum Brings Lived Experiences to Medical Students

As second year medical students, Baylee Kennedy and Kimberly Lipton have been learning about neuroscience and how the nervous system works. They had read about clonus—an abnormal reflex response—but had never witnessed it.

Then they met Riley Barker, a 28-year-old with cerebral palsy. He told them about his condition and how his pain has progressed. Barker’s doctor, Jennifer Earle Miller, MD, asked them to examine his foot. When they applied pressure, his right foot started involuntarily rhythmically shaking. Riley assured the students it did not hurt and urged them each to feel the muscle spasms.

“We saw clonus,” said Lipton. “It’s amazing to see this in-person after learning about it in dry, clinical reading.”

Barker was one of four disability self-advocates at the Patient Safety and Clinical Competency Center at Albany Medical College sharing their lived experiences with medical students. This is the second year Dr. Miller, director of the disability curriculum at Albany Medical College and associate professor in the Division of Physical Medicine and Rehabilitation, has invited patients with disabilities to share their lived experiences with medical students. Dr. Miller has recruited 20 of her patients to interface with medical students throughout the curriculum. Supported by a National Inclusive Curriculum for Health Education grant from the American Academy of Developmental Medicine and Dentistry, the workshop connects medical students with real-life experiences before they begin their clinical curriculum.

“Students have had really rich interactions with actors portraying patients, but this brings the opportunity to engage with actual patients with actual complaints,” said Dr. Miller. “It also allows for appreciating the patient story and giving that a platform in medical school. As they have more experience with patients, they will know how to better serve this patient population.”

Before meeting with the disability self-advocates, students reviewed ADEPT-CARE, a protocol tool to perform a comprehensive history and physical exam for patients with disabilities. The framework includes asking about accessibility in accommodations in both health care settings and elsewhere; ensuring follow-up care is accessible for the patient; and addressing disability-related conditions from chronic disease to physical safety. Dr. Miller stresses the added focus of the patient exam: What can the physician do to help patients navigate the world?

Dr. Miller also highlighted parts of a wheelchair and how different settings can be used to best examine the patient, while Michele Dollar demonstrated in her electric-powered chair.

An RN, Dollar has multiple sclerosis and welcomed the opportunity to work with students. She described an incident where she was having falling issues, and a change in muscle tightness. Unsatisfied with a diagnosis of an MS relapse, Dollar contacted her neurologist who discovered she had a UTI—and it was so advanced she needed IV medication immediately.

“It is important to be respectful and defer to the patient—they are the experts on their bodies and their condition,” said Dr. Miller.

Students also learned how to use adaptive equipment and performed different lift techniques on each other to get a better sense of the patient experience. Another session introduced behavioral and developmental disabilities and best practices for treating patients who are neurologically atypical.

While nationally there has been a move to incorporate more disability education in medical schools, Albany Medical College’s curriculum—and introduction of self-advocates—is unique.

Dr. Miller hopes the students call on this experience as they move into patient settings, with comfort and patient safety top of mind.

Between sessions, Kennedy questioned how spaces designated ADA-compliant could be better designed for patients in wheelchairs. Lipton called the training a highly valuable experience. With her plans to become an obstetrician, “of course I will have patients with disabilities.”