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Doctors at the University of Rochester are learning how to help patients with disabilities

Two women together, one is working on a loom
Max Schulte
Margaret Sprague visits with fiber arts coordinator, Charmaine Bynoe- Norsen, while working on a loom at The Arc of Monroe's Community Arts Connection weaving class.

Margaret Sprague asks for help moving from a chair to her walker. She’s polite — and assertive.

“Can you hold on to the back of the chair?” she asks. “It has wheels on it, and I don't want to fall.”

Sprague, an individual with intellectual and developmental disabilities, has spent most of her life advocating for herself, particularly at doctor’s offices. She says for the most part those visits have been positive.

“They talk to me. If I'm stressed or upset, they're there for me,” Sprague says. “I feel comfortable.”

A woman works on a loom.
Max Schulte
Margaret Sprague works on a loom at The Arc of Monroe's Community Arts Connection weaving class.

However, not everyone with disabilities feels that way about their primary care doctors. According to the National Council on Disability, there are disparities in the health care system that can affect the quality of care these patients experience, including, health care provider misinformation, stereotypes about disabilities, and lack of appropriate provider training.

The University of Rochester Hoekelman Center and The Arc of Monroe, which provides programs and life skills for adults with IDD, have established a partnership that aims to address those challenges, starting with the basics.

“It's a real person behind the diagnoses, it's a real person behind whatever they're coming in to see the doctor for,” says Kim Rinehart, director of outreach and enrollment for The Arc.

As the director, Rinehart does the tours and training for the URMC resident doctors that volunteer for the course. The class places the residents in the social settings of the clients that experience disparities.

Rinehart said these situations help activate the humanitarian aspect of being a physician — a key component of medical care that she believes is often suppressed.

“They spend so much time in clinics or in classrooms and in a book that this is an opportunity to just find the joy in a human interaction,” she says. “Just hopefully give them back that little seed of why they're doing what they do.”

Kim Rinehart, Director of Enrollment and Outreach for The Arc, speaks to a small group of URMC resident doctors about caring for patients with disabilities.
Racquel Stephen
Kim Rinehart, director of enrollment and outreach for The Arc, speaks to a small group of URMC resident doctors about caring for patients with disabilities.

The course also covers the need for doctors to address patients with IDD directly, which Rinehart says establishes comfort and trust between patient and physician. Resident doctors also learn how to handle the amount of paperwork and medical regulations that come with these specific patients, as well as developing familiarity with the resources available through The Arc of Monroe.

“I think it is an important part of my job, and I'm not getting it in the hospital,” says Tony Sun who is five months into his residency at URMC and chose the training as an elective.

Dr. Tony Sun is a resident at URMC who choose the training as an elective.
Racquel Stephen
Dr. Tony Sun is a resident at URMC who chose the training as an elective.

He said that he didn’t learn much about the social factors that may influence someone’s health care experience while in medical school, and being in this environment underscored the importance of gaining this perspective.

“Without knowing about this there's no way that that we can really deliver our medical care,” Sun says.

According to Rosa Lloyd that’s the point of this program, to provide a better standard of care. Lloyd is the manager of the Hoekelman Center. She’s in charge of coordinating the visits.

“The key part of training doctors is helping them to hear and understand the community they serve,” she says. She adds, it’s an opportunity to teach the doctors to be strong advocates for their patients.

Lloyd says the training for pediatric residents has been a requirement for about a decade, but for internal medicine residents, like Sun, it’s still being developed. She hopes the program — which only works with small groups now — can expand in the future, and maybe also become a requirement. Because she believes if patients trust their doctors, they get better health care.

“If you feel like the doctor is really listening to you, and really wants to try and understand what you're going through, the patient would be more willing to open up,” Lloyd says. “If they're opening up to the doctor, then the doctor can better serve that patient.”

Racquel Stephen is a health and environment reporter. She holds a bachelor's degree in English literature from the University of Rochester and a master's degree in broadcasting and digital journalism from the S.I. Newhouse School of Public Communications at Syracuse University.
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