In 1996, the last large institution in Maine closed, but when people with developmental disabilities were released into the community, they avoided any interaction with physicians.
“It was thought people with developmental disabilities didn’t feel pain as others do. If you bit someone, you had your teeth pulled out. Some people were forcibly sterilized,” explains Nancy Cronin, executive director of the Maine Developmental Disabilities Council.
To compound the matter, doctors didn’t—and don’t—have experience with this population. Cronin tells stories of patients at emergency rooms who can’t communicate and their caregiver is not allowed to go into the examining room with them. Data compiled from millions of records by ECRI, a nonprofit focused on improving safety in health care, shows such patients in ambulatory settings are frequently categorized as “violent,” “aggressive” or “non-compliant.”
But Cronin sees it differently.
“When I see a note that a patient is hitting someone, grabbing something, what I see is this person can’t communicate and is terrified,” she says. And her go-to advice: “When behavior changes, rule out pain first.”
Cronin says the inability of patients and health care providers to trust each other is literally a matter of life and death. “How many people died from things that could be easily cured?” she asks. “A person with a sore throat needs to be seen, but the patient has to be comfortable and the doctor has to be comfortable.”
This crisis intensified during COVID: People with disabilities died in large numbers because they were distrustful of the vaccines, didn’t have access to health care or couldn’t communicate their symptoms. So Cronin began—in partnership with the Maine Primary Care Association—a series of “uncomfortable conversations” with doctors called Safe Table.
“At our first event, (the doctors) didn’t really say much and we thought it didn’t hit home,” says Christopher Pezzullo, D.O., who is PCA’s chief clinical officer. “But they talked to us afterward and told us it was so important.”
Cronin say they are still in the education phase, but she was both encouraged and touched by a doctor’s comment after a Safe Table event.
“‘We have to realize these are our patients too,’” she recalls the physician saying. “To start including this population in your practice—that’s what will make the difference. It was magical, really powerful.”