Caring for adults with intellectual and developmental disabilities
As children with autism, Down syndrome, and similar disabilities reach adulthood, they face unique challenges navigating the health care system. Medical schools are just beginning to train physicians in how to treat them.
Rachel Reingold, then a third-year student at Albert Einstein College of Medicine in New York City, thought she knew plenty about people with intellectual and developmental disabilities (IDDs).
She was already an active volunteer for Einstein’s Buddies program, which allows medical students to help with the treatment of children with IDDs at the Rose F. Kennedy University Center for Excellence in Developmental Disabilities.
But it wasn’t until Reingold attended a monthly meeting of adult self-advocates with IDDs that she realized the unique health care barriers that they experience.
The patients spoke candidly about navigating the health care system. “Their critiques were so specific that we were just blown away,” says Reingold. A woman with cerebral palsy described how muscle spasticity made gynecological exams challenging. A man recalled how his doctor solely addressed his caregiver when collecting a medical history instead of the patient himself.
“We knew right away we needed to find a way to educate medical students on the appropriate clinical care of patients with IDD,” she says.
Reingold and several fellow students met with faculty members about their concerns, and the result was Einstein’s first curriculum on patients with IDDs, launched in 2019 in the school’s Introduction to Clinical Medicine course.
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