'Talk to Me, Not My Mom'

It’s a basic humanitarian principle that everyone deserves excellent health care, but such care isn’t always easy to obtain—especially for those with disabilities that can significantly impact their overall health and quality of life.

For people with such intellectual disabilities as trisomy 21 (Down syndrome), health care needs can be complex and wide ranging, necessitating a greater breadth and intensity of services than the general population requires. Meanwhile, people with intellectual disabilities, in particular, may experience inferior health care or find themselves in situations that leave them distrustful of their providers.

Perhaps surprisingly, research shows that only about half of U.S. medical schools have specific curricular content dealing with the care of people with disabilities. Yale School of Medicine (YSM), in a collaboration among faculty, students, and community members, is addressing this need by putting curriculum enhancements in place to help ensure that graduates are prepared to meet the specific health care needs of individuals with intellectual disabilities.

“We know that patients with disabilities face excessive barriers to care, and they often state that their health care providers don’t really understand how to provide the care that they need,” explains Beverley Sheares, MD, MS, associate professor of pediatrics (pulmonology) and leader of YSM’s Health Equity Thread—one of nine longitudinal threads that weave teaching on essential issues throughout the curriculum. “Patients with disabilities should not have to ask for everything they need in order to navigate the health care system. A health system that seeks to actively engage and respond to the needs of people with disabilities is one that is accessible, accommodating, and recognizes that the needs extend beyond the walls of the clinical space.”

In previous decades, shortened lifespans for people with intellectual disabilities meant they received most of their care early in life from pediatric specialists. Now, medical advances are extending their lifespans.

Since the early 1960s, for example, lifespan for people with intellectual disabilities has significantly improved, according to research published in the Journal of Intellectual Disability Research. While the severity of an intellectual disability plays a role in longevity, average lifespan continues to move closer to that of the general population.

“People with intellectual disabilities are living long, productive lives, and it’s important to have a workforce of physicians who know how to care for them,” says Jaideep Talwalkar, MD, associate professor of medicine (general medicine) and pediatrics, and associate dean for education technology and innovation, medical education. Talwalkar has incorporated training on the care for individuals with intellectual disabilities within the curriculum of Clinical Skills, a hands-on course that he leads, covering such topics as physical examinations and communication strategies.

Longer life expectancy leaves many people with intellectual disabilities at a loss for finding sensitive and appropriate medical care beyond the pediatrician’s office, and they need guidance and support throughout that transition. “Anyone who has an adult problem rooted in childhood, such as an intellectual disability, might well have difficulty finding the right type of provider as an adult,” says Talwalkar.

This disconnect is even evident in how or whether patients are directly addressed by clinicians. “There is a tendency for clinicians to talk to the third party in the room, rather than to the patient themselves,” Talwalkar says. This conversational pattern can occur for a variety of reasons: the doctor may believe the third party (often a caregiver or family member) can provide more reliable information; they may think that it might be faster or more efficient; or they may worry that the patient may not understand. “That may be true in some cases, but our role as clinicians is to make the patient feel that they are the most important person in the room—which they are—with a direct line of communication with them tailored to their ability to understand.”

As pediatricians, Talwalkar and Sheares rely on a strengths-based approach to care for all their patients. “No matter what they are going through, people have strengths and talents,” explains Talwalkar. “We try to find what those are and emphasize them. That is no different for adults with intellectual disabilities.” This approach provides guidance that medical students can use effectively to address the needs of people with intellectual disabilities.

As part of the enhanced Clinical Skills course, YSM students now visit residents of Chapel Haven Schleifer Center, a residential community in New Haven in which people with intellectual disabilities learn skills to help them navigate social and work settings.

“All of our medical students now spend an afternoon as a guest of one of the people living at Chapel Haven,” says Talwalkar. “Students are surprised at the strengths of the people they meet there. They see the residents of Chapel Haven bringing a lot to their community. They are able to hold the ear of a group of medical students all afternoon, teaching them how they live and who they are.”

The impetus for the Chapel Haven initiative came from medical student Harry Doernberg, now in his fourth year, who had prior experience working with people with intellectual disabilities. Early in his time at YSM, Doernberg noticed that many of his fellow students had questions about delivering care to people with intellectual disabilities: What kind of accommodations do you need to make in physical access to clinical settings, and in communication? What are the patients’ living situations? Who coordinates care inside and outside the clinic?

“There was space in the curriculum to expand the teaching on the diverse types of patients we care for,” says Doernberg. “At the start of medical school, you are taught to ask very open-ended questions and perform the physical exam in a standard way. For people with intellectual disabilities, it’s important to recognize when adjustments to that approach might be necessary—using closed-ended, yes-or-no, plain-language questions; seeking shorter answers; allowing for extra processing time; and collecting corroborating information from third parties only when required—or even letting patients direct portions of the interview and physical exam themselves.”

YSM students have had classroom learning on these issues for several years, says Talwalkar. “But it took the students to push us to create more experiential learning on this,” he adds. “They didn’t just ask for it. Students like Harry created it, and it will last beyond their time at Yale.”

Observing patients with intellectual disabilities in their homes, as is done at Chapel Haven, can give students a more complete picture of the health care barriers these individuals may face. This holistic approach is the heart of the social model of disability, which has become a guiding force in the medical school curriculum. While medical models of care center on treating disorders, the social model considers a patient’s life outside the clinic.

“The social model does not mean that the medical problems that are associated with a disability won’t be addressed,” says Sheares. “It says that this person with some defined disability needs care beyond what happens in the office. The social model takes all of that into account; it focuses on the whole person, not just the disability.”

This approach often involves partnering with other care team members such as the patient’s family or home nursing caregivers. The key is recognizing the importance of an interdisciplinary team that breaks down barriers for patients not only within the clinic, but also outside the clinic walls.

These new skills and perspectives are being reinforced throughout the YSM curriculum. A group of medical students, including Doernberg, Alexandra Kimmel, and MD/PhD student Nora O’Neill, worked with Erin Nozetz, MD, associate professor of pediatrics (general pediatrics), to add a lecture on caring for patients with intellectual disabilities to the second-year course titled Across the Lifespan. Doernberg, O’Neill, and Nozetz also co-authored an editorial advocating for more medical education to support patients with intellectual and physical disabilities, which was published in the Journal of General Internal Medicine in May 2024.

“It really all started with the students,” says Nozetz. “Then very quickly, within 18 months, we were able to integrate these items into the curriculum.” During the lecture, students learn how to communicate with patients and explore strategies for taking histories, modifying physical exams, and engaging caregivers who attend appointments. “We are drilling home that this is a structural problem, but also something that you as a future provider can change,” says Nozetz, who serves as the disability domain representative on the Health Equity Thread Advisory Committee.

Virtual visits have recently been shown to ease difficult transitions for many patients. “Telehealth is a silver lining of COVID-19,” says Nozetz. YSM students now train in this increasingly common medium for provider visits to patients of all kinds.

Other classes have also adjusted their curriculum to meet the particular needs of different populations. In the Professional Responsibility course, students are taught about the Americans with Disabilities Act and the protections it provides to patients with disabilities. In Population and Methods, students participate in case-based learning as well as training in methodology and statistics centered around disability and public health. Before YSM students enter their clerkships, they meet with patients with disabilities who share what they wish their doctors would do and ask about during office visits.

“When the Health Equity Thread first started in 2020, disabilities were covered in disparate pockets in the curriculum. Now I see the thread pulling those pieces together so that students get broad-based medical education focused on caring for people with disabilities,” says Sheares.

“We are grateful both to be given space in the curriculum and that the enthusiasm by people in the YSM administration has matched ours,” says Talwalkar.