Charlot points to an example of a severely autistic individual who was in obvious pain and agitated. He was eventually admitted to the hospital, but the effective intervention for his $30,000 inpatient stay turned out to be an enema, she says.
"There is the capacity to do this better," says O'Brien. "People know that we can do this better. But we aren't able to change the system to do it better due to the reimbursement methodologies."
While those involved in caring for patients with ASD say intense outpatient programs reduce healthcare costs, they do not suggest that this type of care comes cheap. "I don't think everybody with developmental disabilities needs the intense programs we're talking about," says Charlot, "but the ones who present with a lot of severe behavioral challenges do."
"This is a group of individuals that uses a lot of medical resources and are very expensive to maintain," says Hyman. "I'm a big fan of integrating individuals with disabilities in regular health venues, but what may be most cost effective for some of these situations may be more specialized treatment settings."
A way home
In a perfect world, people with autism and their families would have a medical home of patient-centered care, but they often have fallen through the cracks of the healthcare system. Many have grown skeptical of the healthcare industry, and dubious reports in the mainstream media about an autism-vaccine link and claims of the benefits of unscientific alternative therapies serve to push those with ASD farther from the medical establishment.
These are hardly unknown or unexpected issues. In a Pediatrics physician study, doctors acknowledge barriers to treating children with autism that include a lack of care coordination, reimbursement, and physician education. In another study, family caretakers report spending at least 10 hours a week providing or coordinating care for their ASD family member.
Hyman says time is often the enemy for physicians and their patients with ASD. "The medical home concept is a lovely one, but there's no remuneration for it," she says. "I spent 90 minutes today with a very complex child for a follow-up visit because the university is not going to fold if I'm not paying the rent. I'm borrowing that time from other funded activities. Someone in primary care can't do that with any sort of consistent responsibility to their employees or landlord. Making certain that remuneration systems recognize that people with special healthcare needs, like autism, require extra time and attention to be able to provide this coordinated care is a real challenge to the healthcare dollar."
Still, Bauman says she believes the interdisciplinary medical home model will expand over time, most likely associated with academic medical centers. She says there are 15 sites around the country based on MGH's LADDERS program. "I don't know that every community or hospital is going to have one, but there should be, eventually, situations where families have access to better care than they're getting now," she says. "Someone in California shouldn't have to come to Boston for care."
Medical homes across the nation for patients with ASD are several years away at best, so the more immediate need is for better training for medical professionals in primary and urgent care settings.