Health care needs to become more inclusive

Most people would agree that a welltrained physician — or nurse, patient care tech or any other health care professional — should be prepared to give people effective care regardless of gender, race or age. That’s Inclusivity 101. But for too many in health care, Inclusivity 101 leaves out a very large group: people with disabilities.

With between 20% and 25% of Americans living with a disability, it’s time for medical education to become fully inclusive.

The problems start with assumptions that are often not only wrong, but harmful. Too many doctors and others assume that a disabled patient’s life is defined solely by the disability and has little quality. This can lead them to underestimate how full the life of a person with a disability can be, and that might translate to less-aggressive treatment or even declining to treat at all.

Kara Ayers has Osteogenesis Imperfecta, a rare condition that results in small stature and bones that are easily broken. Her husband has the same condition. When she consulted with a genetic counselor about the prospect of pregnancy, she was told, “If I were you, I’d adopt.” Not because her body couldn’t tolerate pregnancy — she eventually had two biological children and adopted one — but because of the possibility that children would inherit her condition.

Like most people with disabilities, Kara and her husband consider their conditions part of who they are — not something to try to stamp out.

Karen Kostelac, who uses a wheelchair because of slowly progressing multiple sclerosis, has seen the before and after difference. Since she developed gait problems and lost some use of her hands, if her husband goes with her to a medical appointment, providers often direct questions to him rather than to her.

She’s accustomed to seeing surprise on the faces of those providers when she speaks up, as if a light bulb has come on: “Oh, this person can answer these questions.”

For the past decade, Karen has volunteered with Susan Havercamp’s program at Ohio State University as a “standardized patient” — a person who plays the role of a patient, allowing medical students to develop their bedside manner. She sees that same light bulb come on when young, highly nervous students realize she’s a regular person.

Susan’s work focuses on people with disabilities because of her early frustration with poor health outcomes and knowing it wasn’t because of their disability, but because the medical profession simply didn’t know how to care for patients with disabilities.

Susan once had funding for a project to assess health care facilities for accessibility and provide suggestions on how they could improve.

Many turned the offer down, asserting, “We don’t really have disabled patients.” They didn’t grasp that people with disabilities likely weren’t coming to their practices because they were so inaccessible.

We as a society shouldn’t accept that invisibility anymore, especially when it comes to health care. It can’t be acceptable for a health care provider to say, “That’s not my area of expertise.”

Kara and Susan are part of an effort to address the problem. Both served as presenters for “Improving Outcomes for People With Disabilities” — a series of virtual roundtables, presented by Ohio Center for Autism and Low Incidence and the Ohio Association of Health Plans, to help educate providers.

You can learn more about the remaining roundtables at https://bit.ly/ 3KT3Q93.

Essential, everyday care for people with disabilities should be a part of every health care provider’s education. Until that becomes the norm, a large percentage of Americans will remain unseen and underserved.

Kara Ayers, PH.D, is an associate professor at Cincinnati Children’s Hospital Medical Center and associate director of the University of Cincinnati’s Center for Excellence in Developmental Disabilities.

Karen Kostelac volunteers as a standardized patient at The Ohio State University College of Medicine.

Susan Havercamp, PH.D, is director of health promotion and health care parity at The Ohio State University Nisonger Center, a center for Excellence in Developmental Disabilities.