BY JAMES COOK
---- — TRAVERSE CITY — Brian Calley immersed himself in an effort to get autism insurance coverage mandated, even before his own daughter was diagnosed as autistic.
Calley, Michigan’s lieutenant governor, launched his effort during his freshman year as a state lawmaker, when his daughter Reagan was a newborn.
“Over the course of the last decade especially, awareness or the prevalence of autism has risen,” Calley said. “The reaction by the traditional insurance industry has been to essentially bar any coverage for any service at all, even in some instances where you have behavioral therapy, for example. If you read your policy, you’d say, ‘Well, my policy covers behavioral therapy.’ You’d find out they cover it for everything except autism. There really was a systematic exclusion from all insurance, pretty remarkable how complete it was, to the point that a change in the insurance code was necessary to reverse that trend.”
Autism insurance reform failed with each legislative proposal, but seemed to progress, inch-by-inch with every attempt. Calley, a Republican, finally pushed through legislation about a year ago. Reagan is now 6.
Behavior, occupational and speech therapies are now mandatory, but that does not include the round-the-clock institutionalized therapy needed by patients like 13-year-old Issy Stapleton, of Elberta.
The state’s new law also only applies to those under 18 and in the “normal” spectrum of autism, Calley said. That means mild cases are not included, and neither are severe cases like Issy’s. Calley hopes to address institutional care in future legislative efforts; he hopes to include all mental health issues, not just autism.
“That, unfortunately, is beyond the scope of the mandate,” Calley said of Issy’s predicament. “That’s one of the areas I’ll be focusing on in the next year, identifying the gaps as they exist today. We’ve got a ways to go, across the board.”
Reagan is a classic middle-of-the-spectrum case, Calley said.
“She has a lot of great potential for independence,” Calley said. “She’s developing good language skills and can read. These are things that when she was 3 or 2, I didn’t think she’d ever be in a position to be potty-trained, let alone read. It’s pretty remarkable what behavioral therapy can do. She’s had access to behavioral therapists — long before the legislation was passed — but it was difficult enough for me to find that for my daughter. I knew for the average person, it would be impossible.”
The fact that insurance companies largely excluded autism from coverage came with a side effect: doctors shied away from that area of expertise because business was harder to come by, despite a high number of patients.
“When you have complete, total and systematic exclusion of autism therapy coverage, you didn’t get a lot of professionals who would practice here,” Calley said.
The Autism Alliance of Michigan estimates at least 15,000 children and young adults in Michigan receive services through schools for autism.
Since the reform passed, Calley said the number of behavioral therapists that work with autism in Michigan increased from 32 to 44.
“We’re getting more, creating more every year in our universities,” Calley said. “But we’ve got a long, long way to go. Opening up the insurance code was just step one. Development of an adequate network is step two.”
Eastern Michigan University is graduating about 10 therapists a year, while Western Michigan University produces about 15 to 20 and Oakland University also has a program.
“The lack of institutional care — not only in Michigan, but nationwide — is a major deficiency that people are struggling through,” Calley said, “particularly when they have kids where the autism is so severe that they can’t really handle it on their own.”