Oliver McGowan was 18 years old when he was hospitalized in England with recurrent seizures and pneumonia. He was autistic, and he and his parents had one specific request for the medical team: no antipsychotic medications. When he had taken them in the past, they made his seizures worse and had devastating effects on his mood. Despite the family’s vehement protests, doctors gave him an antipsychotic. A few days later, Oliver suffered a lethal neurological side effect. A week later, he was taken off life support. An inquest into his death found that the drug had led to the rapid deterioration.
After his death in 2016, his mother, Paula, launched a campaign to mandate training on intellectual disability and autism for health care workers. In 2022, the U.K. National Health Service listened. Now, all health care workers in the NHS must complete both an online module and a live interactive session covering communication and accommodations needed for this population. The U.S. needs to follow suit, starting with medical schools.
Though there are 7.4 million Americans with intellectual and developmental disabilities, physicians are often uncomfortable treating them. In a recent survey of 714 Massachusetts physicians across various specialties, only 40% reported being very confident treating physically or intellectually disabled patients, and just 56% strongly agreed that they’d welcome disabled patients into their practice. Another study found that 77% of physicians reported only poor or fair ability to care for autistic individuals, in particular. It is no wonder that families struggle to find disability-friendly practices, and that people with intellectual and developmental disorders are four times more likely than neurotypical people to have unmet health care needs.
I know firsthand what these barriers can look like because my twin brother is the 1 in nearly 10 U.S. children diagnosed with an intellectual and/or developmental disability. His profound autism and nonverbal status mean my family lives with anxiety about taking him to the hospital or even about finding physicians willing to treat him. This past summer, my mother had to call 12 oral surgery practices before finding a surgeon willing to extract my brother’s painful wisdom tooth. Now, as a new medical student, I’m starting to understand why the health care system is so unwelcoming to people with intellectual/developmental disabilities (IDDs).
Much of the issue stems from a lack of education surrounding these topics in medical schools. Thirty of the 155 medical schools across the United States provide no curricular content about developmental disabilities. Of the schools that do, many offer it only in the form of an elective, which tends to attract a self-selecting group of students already interested in IDD health, particularly those pursuing residencies in neurology or psychiatry.
But anyone who wants to be a practicing doctor in any specialty needs to know how to work with patients with IDD. My brother sees a primary care provider, dentist, allergist, ophthalmologist, and gastroenterologist. Women and girls with IDDs also need routine care from a gynecologist. These patients require medical care from every discipline, which means that learning to care for them should be a mandatory part of medical school curricula.
Yet efforts to integrate more IDD education have been slow. In 2009, the American Academy of Developmental Medicine and Dentistry created a funding source to eliminate financial barriers for all U.S. medical schools to integrate robust IDD education in their curricula. The National Curriculum Initiative in Developmental Medicine program offers grants and resources to schools willing to undertake this curricular addition. As of 2023, only 15% of U.S. medical schools have taken advantage of these grants.
I’m very grateful to attend one of the few medical schools that did so, just four years ago. Though we still have much room for growth, our curriculum is beginning to represent the type of IDD education that every medical student in the country should receive.
1. Providing longitudinal exposure: Most medical schools have three phases of training: preclinical classroom learning, clinical rotations, then post-clinical time. Ideally, IDD-related content should be integrated across all three of these phases. At Harvard, we receive our first exposure during our first-semester genetics course, when we meet adults with Down syndrome. To prepare for clinical rotations, students have sessions about working with caregivers and disabled patients. After rotations are over, electives such as “The Children with Neurodevelopmental Disabilities,” or “Developmental Pediatrics and Learning Disorders,” offer opportunities for more in-depth learning about these populations. By incorporating these throughout the four years of schooling, schools send a clear message: Those with IDD deserve physicians competent in serving them.
2. Teaching what questions to ask: Physicians have the responsibility to ask questions that will garner relevant information — allergies, family medical history, substance use, etc. IDD patients require some additional questions. Are there certain stimuli that make the person upset or hyper-stimulated? How do they communicate? Do they have sensory differences? For instance, a physician asking us these questions would learn that my brother gets over-stimulated by loud voices and that he has an unusually high pain tolerance. As students at my school transition to clinical rotations, they begin receiving direct guidance on effectively interviewing disabled patients and how to balance caregiver participation. Some other schools have implemented an additional “standardized patient encounter,” a cornerstone of clinical training, where students must effectively communicate within a devised scenario where a patient actor has IDD.
3. Teaching how to adapt to patient needs: Asking the right questions can help future doctors make visits smoother for people with IDD. This sort of practical training to help accommodate IDD patients is an area still under progress at my school. For example, knowing that a patient struggles with the concept of time could be a sign to use a visual timer or schedule to keep them motivated throughout an appointment. Knowing that bright lights overstimulate the patient is a sign to dim lights before they arrive. Our childhood dental hygienist always scheduled my appointment right before my brother’s so he could see what to expect and sometimes did his dental cleaning as he sat in a chair instead of laying down beneath the bright light. In preparation for dreaded vaccinations, our pediatrician set colorful lollipops on the counter so my brother had a tangible reward within view. We found these providers through word of mouth from other IDD families, knowing well that most providers aren’t as willing to accommodate. Medical students learn to adapt to various patient populations such as in pediatric and geriatric realms, and the IDD population should be no exception.
The last few years have seen many physicians and disability advocates calling for the Liaison Committee on Medical Education (LCME) to mandate IDD curricula for medical schools to be accredited — and these calls remain unanswered.
Luckily, medical education lives in a constant state of evolution, responding to its fundamental call to address shifting societal needs. In response to the growing opioid crisis, 95% of medical schools now train students on opioid addiction, and in response to more social awareness, many schools are developing LGBTQ+ health curricula. Disability education must follow suit.
Romila Santra is a first-year medical student at Harvard Medical School.