Clearing Hurdles to Care

Improving health care for people with disabilities a focus of conference

Oluwaferanmi Okanlami. Image: Jeff Thiebauth
Oluwaferanmi Okanlami. Image: Jeff Thiebauth

For physicians, understanding the complex and intersecting identities of people with disabilities is key to providing the health care that those patients need and deserve. But for many, getting that care can present a high hurdle.

“Nothing is ever easy,” said Rachel Tanenhaus, the ADA Coordinator and executive director of the City of Cambridge Commission for Persons with Disabilities. “It’s not because of [a] disability, it’s because of systemic ableism.”

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“We live in a world that was not made for us,” Tanenhaus said. “If you think that doesn’t affect someone’s physical and mental health, you’re not paying attention.”

Finding ways to improve health care delivery to all people, and especially those with disabilities, was one of the primary topics at this year’s 2018 Leadership and Faculty Development Program Conference and Minority Health Policy Annual Meeting held May 3 - 4 at Harvard Medical School.

The conference brought together more than 150 thought leaders in medicine, public health, policy and civil rights to have a robust discussion on where they may find opportunities to improve medical education, policy and the quality of care delivered to patients—particularly those with disabilities.

Some of the discussion centered on the intersectionality of disabilities from both the physician and patient perspectives.

“Barriers to health care delivery are more difficult to surmount for patients with disabilities,” said Nicole Mazwi, HMS instructor in physical medicine and rehabilitation at Spaulding Rehabilitation Hospital, who emphasized the responsibility of physicians to both acknowledge their own bias and educate themselves to better serve their patients.

 “Educating within the community is priority one … to serve our patients better,” Mazwi said.

Ground-level systemic challenges to caring for patients with disabilities play a significant role in quality of care received, speakers said. In most cases, medical records lack a routine place to record functional status of a patient, they were told.

“People with disabilities are routinely excluded from randomized control trials,” and there is little data available to assess population health, said Lisa Iezzoni, HMS professor of medicine and director of the Mongan Institute Health Policy Center at Massachusetts General Hospital.

Personal Stories

Panelists told personal stories of the inaccessibility of most medical facilities, citing outdated and inadequate equipment for properly accommodating a person with a disability.

 “We make change by meeting people where they’re at; we make change by having honest conversations,” advised John Winske, executive director of the Massachusetts Disability Policy Consortium, underscoring the importance of the human aspect of disability education and policy—and the importance of considering more than just a person’s disability when assessing patient health.

Barriers within health care are only one aspect of the challenges faced by people with disabilities, panelists said. Access to housing and transportation are two of the other major difficulties of day-to-day life and can play significant roles in a person’s mental and physical health.

In the age of patient-centered care, the medical field is falling short of its own ideals when it comes to patients with disabilities, said Bill Henning, executive director of the Boston Center for Independent Living.

Oluwaferanmi Okanlami, assistant professor in family medicine at University of Michigan Medicine, offered his experiences as a physician with a disability in his keynote address.

 “When you assume someone can’t do something, you miss all the things that person could potentially contribute,” Okanlami said. “I have one foot in one world and one wheelchair wheel in another,” he said, describing his unique ability to relate to patients who may also have a disability or be struggling with difficult circumstances.

Greg Galeazzi, HMS Class of 2021, also believes he is able to draw from his disability to offer something unique to the medical profession by bridging the gap between people with disabilities and the doctors who treat them.

Galeazzi’s presentation emphasized the absence of physicians with disabilities, pointing out that ultimately the medical field suffers as a result.

“While it can be fun sometimes to shatter expectations,” Galeazzi said of his work in medicine, “there’s a sinking feeling that people are underestimating me.”

Other topics covered at the conference included funding opportunities for career development training and presentations of research by Commonwealth Fund Mongan Fellows, HMS Diversity Inclusion and Community Partnership Fellows, and Harvard Catalyst Program for Faculty Development and Diversity Inclusion Fellows. The cornerstone throughout was a focus on addressing health policy at all levels.

Attendees included current and alumni fellows from the American Cancer Society, Hogg Foundation for Mental Health, Atrium Health, Boston Healthcare and other institutions; faculty from Harvard-affiliated hospitals; staff, students and trainees from HMS, Harvard School of Dental Medicine and the Harvard T.H. Chan School of Public Health; and individuals from the greater Boston community.