It was as perfect a day for a hike in New York in late November could be with clear, blue skies, a crisp winter chill, and leaves of different colors and shades slowly falling to the ground. I and a few Einstein classmates were joining members of the Special Olympics NY Hiking Club for their monthly hike. As the athletes began to arrive, you could feel the anticipation and excitement that had built over the last year and a half. COVID-19 had forced hikes and other organizational gatherings to be cancelled. The athletes welcomed us newcomers, brought us into the group conversations and soon, we were off hiking around the pond. We talked about anything and everything, from their upcoming Special Olympics competitions to what their favorite places to hike were to what they were planning to do for the rest of the weekend.
New encounters, familiar faces
We were approaching the final bend of the hike, when one of the athletes turned around and exclaimed to me and my classmate, “I remember where I know you guys from. The cooking show!” Another athlete chimed in with, “Oh yeah, my family and I ate that hummus for weeks. That was great. When’s the next one?” Last fall we’d held a course about healthy cooking with the Special Olympics athletes via ZOOM. Now, in person, one of the athletes detailed her cooking struggles. She has had an air fryer for months, but it just continues to collect dust because she didn’t know how to use it and no one in her group home was able to help her. This sparked our next cooking show idea, finding a recipe that we could make using the air fryer. We’ve since learned that “Air Fryer Green Beans” are delicious and have incorporated them into our just completed installment of the cooking class!
At first glance, hiking or holding a cooking class may not seem “medical”, but these events do affect the health of individuals with intellectual and developmental disabilities (I/DD). Hiking has obvious physical benefits. Learning to use the air fryer not only increases the variety of healthy and nutritious foods available to the athletes, it also provides them with a sense of accomplishment and independence.
These encounters also highlight many of the reasons I chose to pursue a career in medicine. Growing up alongside my brother who has cerebral palsy, I have often found joy in working with and advocating for the I/DD community.
Medical needs of people with I/DD
Those with I/DD disproportionately face many health disparities. A major reason for this is the lack of education and experience in working with individuals with I/DD while in medical school. Currently, there is no national requirement for how, or even if, medical schools should teach topics regarding the healthcare of individuals with I/DD. Fortunately, Einstein is one of the few medical schools with learning sessions on I/DD healthcare embedded into the curriculum. This curriculum was first introduced in 2019 and it continues to grow each year with more didactic and interactive small-group sessions for 1st and 2nd year students.
The recently formed American Academy of Developmental Medicine & Dentistry (AADMD) chapter at Einstein is another example of how students can learn about the needs and care of local individuals with I/DD. AADMD is a non-profit national organization that brings together medical professionals from different backgrounds, specialties, and careers, in order to improve the healthcare and ultimately the lives of individuals with I/DD through education, collaboration, and advocacy. Events the group has held enable medical students to interact with and get to know these patients outside of the clinical setting. Bringing the AADMD organization to Einstein has opened up more opportunities for Einstein students to learn about the I/DD community and their specific health concerns. It has also allowed for students to get to know community members with I/DD, learning who they are and what their stories are, and their unique individual needs.
I hope that through these opportunities and lessons, the next time a classmate views a patient chart and the opening line states that it’s an individual with I/DD they will not overlook the patient, addressing only the caregiver or avoiding sensitive topics like mental and sexual health. Instead, I hope that they begin to look beyond the diagnosis and see each individual for who they are and what it takes to meet their health needs.
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Thank you for writing this. I look forward to emergency medical care workers learning how to care for people with I/DD. A person with I/DD has justified fear seeking help for a medical emergency, as so many doctors and nurses treat the I/DD as the emergency, and end up losing precious life-threatening time delaying addressing the actual issue.