After receiving several behavior plan adjustments, a 19-year-old was referred to the multidisciplinary evaluation clinic at UMass Memorial Behavioral Health System in Worcester, MA, says Lauren Charlot, PhD, assistant professor of psychiatry. "It all looks the same—he's agitated and hitting people," she says. "He's not going to say, 'I'm hitting you today because my stomach hurts or my chest hurts or my throat hurts and I can't swallow.'"
Even though people with ASD oftentimes have greater medical needs and several healthcare contacts, they frequently have disjointed medical care. In a study published in Pediatrics in 2008, children with autism were found more likely to have unmet healthcare needs, and family caretakers reported "delayed or forgone care, difficulty receiving referrals, and care that is not family centered." The study compared results for children with healthcare needs and autism, with those for children with healthcare needs but without emotional, developmental, or behavioral problems.
In the case of the 19-year-old with severe autism who was eventually referred to the UMass program, he suffered for weeks with stomach pain, but his caretakers and behavioral health specialists didn't know it, says Charlot. He didn't need another medication adjustment; he needed to see a GI specialist.
Patients with ASD are at a greater risk of misdiagnosis, overmedication, and unnecessary inpatient admissions. While studies have found that people with ASD are more likely to have greater medical needs compared to neurotypical patients, no one really knows what these errors in medical care cost the healthcare system or whether using interdisciplinary teams for the severely autistic could reduce healthcare costs.
Experts who run the interdisciplinary team at UMass believe their approach is less costly and results in fewer emergency situations and inpatient admissions. The problem is not getting medical specialists on the team reimbursed for specific medical services, says William O'Brien, executive director of the UMass Memorial Behavioral Health System. But he says the fee-for-service system doesn't sufficiently reimburse for Charlot's team to conduct detailed case reviews or for the time needed to communicate across the interdisciplinary team.
He says that the program has had limited success in involving payers to invest medical risk dollars into the program, but that it is difficult to quantify any cost savings the team might have due to this more precise and efficient care delivery.