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Caring for adults with intellectual and developmental disabilities

Sarah Mahoney, special to AAMCNews
April 19, 2022

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.

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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.

“With longer life expectancies, this population is growing fast­. … Medical schools have never kept pace with this change.”

Matt Holder, MD, MBA
Past president, American Academy of Developmental Medicine and Dentistry

Similar changes are underway across the United States as awareness of IDD-related knowledge gaps and health disparities increases. More than 8 in 10 graduating medical students have no training in caring for adults with IDDs, and education about children with IDDs is minimal as well, according to Priya Chandan, MD, PhD, MPH, project director of the National Curriculum Initiative in Developmental Medicine.

Working with more than two dozen U.S. medical schools, the curriculum initiative — a program of the American Academy of Developmental Medicine and Dentistry (AADMD) — aims to rectify that problem. In addition, the AADMD, the AAMC, and several other organizations are working through the Action to Build Clinical Confidence & Culture to disseminate nationally strategies that better prepare clinicians to serve people with IDDs. And other individuals and institutions are pursuing educational changes on their own.

­­In large part, the trend stems from need. IDDs encompass hundreds of diagnoses — autism, cerebral palsy, and Down syndrome among them — that affect about 6.5 million people in the United States. In addition to a dramatically increased life expectancy for people with IDDs, the number of children with autism spectrum disorder is skyrocketing, rising from 1 in 150 in 2000 to 1 in 44 in 2018.

“With longer life expectancies, this population is growing fast­ — and well beyond the realm of pediatrics,” says Matt Holder, MD, MBA, an AADMD past president. “Medical schools have never kept pace with this change.”

Schools provide hands-on training

“Clinical training is a prerequisite for quality care,” says Chandan, an assistant professor in neurological surgery at the University of Louisville School of Medicine and vice president of healthcare quality and analytics at the Louisville-based Kramer Davis Health clinics. Chandan is also the sister of a man with Down syndrome.

Chandan explains that the goal is to educate medical students to work with patients with IDDs from pediatrics through geriatrics.

For example, Baylor College of Medicine in Houston offers a month-long Life with IDD elective that places students in clinical settings, including pediatric hospitals, an adult clinic, and day programs for people with IDDs. They also visit patients’ homes.

That exposure provides insights they’d never get from strictly clinical observations, says Cynthia Peacock, MD, an associate professor of medicine at Baylor and creator of the school’s Transition Medicine Clinic, which helps patients move from pediatric to adult medicine. Adolescents and young adults with IDDs often face daunting challenges as they lose services that tend to be geared toward children.

Peacock says it is especially gratifying to watch medical students work through their initial discomfort. “Right now, there are such gaps in their education, and students often have had no exposure to people with IDDs. They start with worries,” she says. “Will the patient understand me? How do I make them comfortable?”

Students complete surveys at the start and end of each rotation. “They tell us they feel their practice will change as a result of their training, so that’s encouraging,” Peacock says.

Medical schools are also developing content focused on the enormous health disparities between those with IDDs and the general population. “Even with rising life expectancy, they still die earlier, often from preventable comorbidities,” says Thomas Scheidemantel, MD, a psychiatrist and assistant professor at Case Western Reserve University School of Medicine in Cleveland.

Diagnostic overshadowing is one major problem. Doctors often assume a nonverbal patient with an IDD who is acting aggressive or irritable should be sent to the emergency department and given antianxiety drugs, according to Scheidemantel. “They see it as psychiatric,” he says. “But that behavior might be coming from intense pain, like an ear infection.”

Sometimes, provider ignorance can even be life-threatening. “I’ve seen athletes arrive at Special Olympics events in active heart failure, after being cleared by not one but two physicians,” says Holder, who served as the organization’s global medical advisor.

“It was all new to me. It was uncomfortable. It was challenging. And I fell in love with working with these patients.”

Thomas Scheidemantel, MD
Assistant professor, Case Western Reserve University School of Medicine

At Case Western, medical students now participate in three team-based learning sessions and a workshop on interviewing adults with IDDs. These include case-based vignettes and Q&A sessions with a panel of parents of children with IDDs — all part of required preclinical courses and a pediatric clerkship rotation. And there’s an elective rotation on adult IDDs in psychiatry.

That’s very different from what Scheidemantel experienced during his own training. “I went all the way through my psychiatry residency without ever being required to treat or learn about IDD patients,” he says.

As he looked for a focus for his practice, though, a mentor coaxed him into an IDD clinic. “It was all new to me. It was uncomfortable. It was challenging. And I fell in love with working with these patients,” he says.

Changing attitudes

Jessica Prokup, MD, felt she already knew far more than most doctors about IDDs going into medical school. John, her older brother, has both Down syndrome and autism.

But her experience with the new disability curriculum at Ohio State University (OSU) College of Medicine in Columbus completely reshaped her medical goals. Now, she hopes to focus her practice on adults with neurodevelopmental disabilities.

To her surprise, the training also alerted Prokup to her own assumptions about patients with IDDs. “My brother requires more assistance and one-on-one supervision,” she says. “It would not be feasible for him to move out of my parents’ house.” But her classes at OSU help broaden her perspective.

“Many individuals with intellectual disabilities prefer living situations in which they can be more independent and live with roommates. They run errands, have social lives, go to bars, date, and get married just like anyone else. Many have children and raise families,” says Prokup, currently a chief resident in physical medicine and rehabilitation at the University of Pittsburgh Medical Center.

She says the disability curriculum “showed me that just as no two neurotypical individuals are the same, no two people with disabilities are the same,” she says. “This insight will allow me to provide better person- and family-centered medical care to my patients.”

Putting patients front and center and acknowledging their strengths is key to curricular efforts, say those involved. For example, Chandan emphasizes the importance of addressing various forms of ableism, whether subtle or explicit, that devalue people because of their disabilities. And she urges including self-advocates in trainings since people with IDDs — once hidden in institutions — are powerful voices for educating others and changing attitudes.

“My brother is the best teacher I know,” says Chandan. “Because of him, I’ve long known that people with Down syndrome face a much higher risk of Alzheimer’s disease.” She was shocked that her medical training never addressed it. “That's the kind of clinical consideration that families talk about all the time, but doctors and other health care professionals often remain unaware of.”

Patients also expand understanding by explaining their language preferences. “Some prefer people-first language such as ‘a person with Down syndrome,’ while others like identity-first language, such as ‘an autistic person,’” she says.

Educators also note that physicians need to understand that an IDD often affects many areas of a person’s life.

That’s why it’s essential, says Prokup, that medical students learn about the complexity of treatment — including the elaborate cast of involved health care providers.

“Families often have to serve as the interdisciplinary care coordinator for their loved ones. I learned more about allied health fields through lived experience with my brother than I did during medical school,” she says.

Einstein, for one, is working to make interprofessional training part of the curriculum, says Joanne Siegel, codirector of Einstein’s Kennedy Center and a leader of the curricular changes.

“The IDD field has come such a long way,” she says, “but we still have a great deal to do to educate doctors. Caring for adults often involves interacting with — and learning from — a large team of professionals, individuals, and caregivers, which does not come naturally for all doctors.” 

Finally, proponents of an IDD curriculum say the most significant benefit isn’t to patients with IDDs but to the toolbox of young doctors. “The knowledge and skills students learn working with IDD patients can generalize to almost anybody,” says Felise Milan, MD, a professor of medicine at Einstein. “As you learn to build rapport and trust with someone with intense needs, emotional or physical, that skill transfers to all patients.”

Students have been so enthusiastic about their school’s training — which covers diagnosing children and all the basics of adult medical care — that they’ve developed an Einstein Student Chapter of the AADMD. Now, some 50 students meet regularly to plan community involvement activities.

It’s been a hit not just with students but with faculty and self-advocates as well, Milan says. “Once we started doing this, we said, ‘Why in the world did this take so long?’”

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