Lori and Gordon Swan paid about $19,000 last year for therapy to help their 12-year-old autistic son, Michael, because it wasn't covered by their health insurance.
The Ingham County couple says their 9-year-old son Lane, who isn't autistic, has had some of the same speech therapy. But his was paid for by insurance companies.
The Swans and others Michigan families with autistic children say that isn't fair. They have joined an effort to require health insurance companies to cover more intensive and costly behavioral therapies for autism, a range of disorders that hinder a person's ability to communicate and interact with others.
Some insurers and business groups say forcing companies to cover costly treatments for autistic children will push premiums higher, hurting businesses and employees.
"This sort of mandate would add to the cost of employer-sponsored health insurance," said Wendy Block of the Michigan Chamber of Commerce, which opposes the legislation.
Autism has been diagnosed in about one out of every 150 U.S. children. Most doctors believe there is no cure, but many researchers say autistic children can make strides with certain behavior therapies.
Bills that would force insurance companies to cover those treatments have been introduced by Michigan Democrats in both the state House and Senate. They want Michigan to follow the lead of Indiana and a few other states that have passed laws to require better health insurance coverage for the disorder.
"We've gone through quite a bit of money and time trying to get Michael the help that he's needed," said Lori Swan, who lives in Wheatfield Township. "No matter how hard I've tried, I have not been able to find an insurance company that has been willing to cover the therapies and the things that are needed for him."
Similar legislation was introduced in Michigan during the 2007-08 session but didn't advance after running into opposition.
Blue Cross Blue Shield of Michigan is among those opposing the legislation. It agrees with Block that mandating additional coverage could increase insurance costs at a time when many groups are struggling to pay for their existing coverage.
Some opponents point out that Michigan's public intermediate school districts already provide some services to autistic children. But those favoring the change in law say those services are limited, particularly in the amount of time therapists can spend with autistic children.
While most insurance companies cover autism screening, they don't extend benefits to pay for the therapies and treatments that could help children cope with the disorder, Democratic supporters say. That leaves families paying thousands of dollars out of their own pocket for treatments.
Many families can't afford the therapies and are forced to go without them.
"Excluding autism from coverage is completely arbitrary," said Rep. Joan Bauer, D-Lansing. "It's unfair. It's wrong. And it sets back efforts to understand and to treat this disorder. These are treatments our children need to help them live their daily lives."
The Swans say they have been told Michael's therapies aren't covered by insurance because, since he's autistic, it's doubtful he'll get better even with the speech therapy and other help. But the Swans disagree, noting that Michael — diagnosed with autism at age 2 1/2 — began speaking at age 8. He started using full sentences at age 10.
"He can tell me what he wants," Lori Swan said. "When he was little, it was a guessing game."
Ten states — including Arizona, Florida, Illinois, Pennsylvania and Texas — now have or likely soon will have laws requiring more insurance coverage for autism. Most of those states have adopted the measures in the past three years.
Autism Speaks, an advocacy group with a primary office in New York, is pushing to add Michigan and several other states to that list this year.