Primary care physicians — a convenient option for many families — could fill some of those gaps if the doctors had better training, said Kristin Sohl, a pediatrician who teaches these skills at the University of Missouri. "We've got to make this accessible so that people can have access to what they need when and where they need it," Sohl said.
But many physicians feel ill-equipped to provide this care.
In one survey, just 40% said they were very confident that their care for patients with disabilities was as good as their care for other patients. Only about half strongly agreed that they welcome patients with disabilities.
Training remains one barrier. Even though as many as 16 million Americans have autism or another intellectual or developmental disability, the subject is a small part of the curriculum at most medical schools.
Another obstacle, Sohl and others say, is a tendency in American health care to simply refer patients to specialists. "It's so hierarchical," Sohl said.
Changing that has become [Dr. Mai] Pham's life's work.
She quit her job at a major health insurer in 2020 to start the Institute for Exceptional Care. The nonprofit aims to overhaul the way doctors are trained and paid so they can spend more time with patients with disabilities, instead of rushing through visits because of billing pressures.
"We've made huge investments in the science and in some ways the clinical aspects of care," Pham said. "But we haven't thought about how to make any of that sustainable.