As an undergraduate student at Northeastern University in Boston, Meghan Chin spent her summers working for a daycare agency in Rhode Island. Her charges were adults with various forms of intellectual and developmental disabilities (IDD).
“I was very much a caretaker,” Chin, now 29, said. “It was everything from helping them get dressed in the morning to getting them to medical appointments.”
During one such visit Meghan got a lesson about how healthcare looks from the viewpoint of someone with an IDD.
The patient was a woman in her 60s and she was having gastrointestinal issues; symptoms she could have articulated, if asked. “She was perfectly capable of telling a clinician where it hurt, how long she had experienced the problem, and what she had done or not done to alleviate it,” Chin said.
And of comprehending a response. But she was not given the opportunity.
“She would explain what was going on to the clinician,” Chin recalled. “And the clinician would turn to me and answer. It was this weird three-way conversation — as if she wasn’t even there in the room with us.”
Chin was incensed at the rude and disrespectful way the patient had been treated. But her charge didn’t seem upset or surprised. Just resigned. “Sadly, she had become used to this,” Chin said.
For the young aide, however, the experience was searing. “It didn’t seem right to me,” Chin said. “That’s why, when I went to medical school, I knew I wanted to do better for this population.”
Serendipity led her to Georgetown University Medical School, in Washington, DC, where she met Kim Bullock, MD, one of the country’s leading advocates for improved healthcare delivery to those with IDDs.
Bullock, an associate professor of family medicine, seeks to create better training and educational opportunities for medical students who will likely encounter patients with these disabilities in their practices.
When Bullock heard Chin’s story about the patient being ignored, she was not surprised.
Dr Kim Bullock
“This is not an unusual or unique situation,” said Bullock, who is also director of GU’s Community Health Division and a faculty member of the university’s Center for Excellence for Developmental Disabilities. “In fact, it’s quite common and is part of what spurred my own interest in educating pre-med and medical students about effective communication techniques, particularly when addressing neurodiverse patients.”
More than 13% of Americans, or roughly 44 million people, have some form of disability, according to the National Institute on Disability at the University of New Hampshire, a figure that does not include those who are institutionalized. The Centers for Disease Control and Prevention estimates that 17% of children aged 3-17 years have a developmental disability.
Even so, many physicians feel ill-prepared to care for disabled patients. A survey of physicians, published this month in the journal Health Affairs, found that some lacked the resources and training to properly care for patients with disabilities, or that they struggled to coordinate care for such individuals. Some said they did not know which types of accessible equipment, like adjustable tables and chair scales, were needed or how to use them. And some said they actively try to avoid treating patients with disabilities.
The first step at correcting the problem, Bullock said, is to not assume that all IDD patients are incapable of communicating. By talking not to the patient but to their caregiver or spouse or child, as the clinician did with Chin years ago, “we are taking away their agency, their autonomy to speak for and about themselves.”
Change involves altering physicians’ attitudes and assumptions toward this population, through education. But how?
“The medical school curriculum is tight as it is,” Bullock acknowledged. “There‘s a lot of things students have to learn. People wonder: where we will add this?”
Her suggestion: Incorporate IDD all along the way, through programs or experiences that will enable medical students to see such patients “not as something separate, but as people that have special needs just as other populations have.”
Case in point: Operation House Call, a program in Massachusetts designed to support young health care professionals, by building “confidence, interest, and sensitivity” toward individuals with IDD.
Eight medical and allied health schools, including those at Harvard Medical School and Yale School of Nursing, participate in the program, the centerpiece of which is time spent by teams of medical students in the homes of families with neurodiverse members. “It’s transformational,” said Susan Feeney, DNP, NP-C, director of adult gerontology and family nurse practitioner programs at the Tan Chingfen Graduate School of Nursing at the UMass Chan Medical School, in Worcester. “They spend a few hours at the homes of these families, have this interaction with them, and journal about their experiences.”
Feeney described as “transformational” the experience of the students after getting to know these families. “They all come back profoundly changed,” she told Medscape Medical News. “As a medical or healthcare professional, you meet people in an artificial environment of the clinic and hospital. Here, they become human, like you. It takes the stigma away.”
One area of medicine in which this is an exception is pediatrics, where interaction with children with IDD and their families is common — and close. “They’re going to be much more attuned to this,” Feeney said. “The problem is primary care or internal medicine. Once these children get into their mid and later 20s, and they need a practitioner to talk to about adult concerns.”
And with adulthood come other medical needs, as the physical demands of age fall no less heavily on individuals with IDDs than those without. For example: “Neurodiverse people get pregnant,” Bullock said. They also can get heart disease as they age; or require the care of a rheumatologist, a neurologist, an orthopedic surgeon, or any other medical specialty.
Fortunately, the next generation of physicians may be more open to this more inclusionary approach toward a widely misunderstood population.
Like Chin, Sarah Bdeir had experience with this population, prior to beginning her training in medicine. She had volunteered at a school for people with IDD.
“It was one of the best experiences I’ve ever had,” Bdeir, now 23 and a first-year medical student at Wayne State University in Detroit, said. She found that the neurodiverse individuals she worked with had as many abilities as disabilities. “They are capable of learning, but they do it differently,” she said. “You have to adjust to the way they learn. And you have to step out of your own box.”
Bdeir also heard about Bullock’s work and is assisting her in a research project on how to better improve nutritional education for people with IDDs. And although she said it may take time for curriculum boards at medical schools to integrate this kind of training into their programs, she believes they will, in part because the rising cohort of medical students today have an eagerness to engage with and learn more about IDD patients.
As does Chin.
“When I talk to my peers about this, they’re very receptive,” Chin said. “They want to learn how to better support the IDD population. And they will learn. I believe in my generation of future doctors.”
John Hanc’s most recent health book is Strong Heart, Sharp Mind: The 6-Step Brain-Body Balance Program that Reverses Heart Disease and Helps Prevent Alzheimer ‘ s, which he co-wrote with authors Joseph C, Piscatella and Marwan Sabbagh, MD. A former contributing editor to Runner’s World magazine, Hanc writes on health-related topics for The New York Times, Newsday, Brain & Life Magazine, and other publications.
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