Michigan parents vow to continue fight for insurance coverage of autism services

From The Flint Journal:

GENESEE COUNTY, Mich. -— Nine-year-old Remi Bossardet (pictured) wants to be a mayor when he grows up, or maybe an actor, or possibly a football player.

“I’m very strong — you can ask all my friends,” the Fenton fourth-grader said. “Really, whatever I decide to do, I can just do it.”

His family agrees.

But for now, there are some challenges for the blue-eyed boy with Asperger’s syndrome, a high-functioning form of autism. School is overwhelming. Frustrations translate into outbursts. Socializing doesn’t come naturally.

Remi’s family is joining dozens of others in Genesee County who are advocating for a controversial state mandate to force insurance companies to cover autism services — a bill that died in the state Senate this month but whose backers are pushing to reintroduce in January.

“If he had diabetes or cancer, insurance would cover what he needs,” said his mother, Malissa Bossardet. “But not autism. It’s discriminatory.”

It’s an issue that has divided the state. Critics say such a mandate would be an overly expensive burden on the health care system, while supporters argue the opposite — covering the services early on would save millions down the road.

There has been notable bipartisan support, with Lt. Gov.-elect Brian Calley, whose daughter is autistic, making one of the most highly publicized pleas to pass the legislation.

But divisions remain, even between usual allies, such as Senate Democrats and the UAW.

The measure was opposed by the Michigan AFL-CIO and the UAW, whose leaders said they want to be able to bargain health care coverage options.

“There are things that sound like the right thing to do because of the social reasons, but when you pick it apart, we have legislators trying to dictate to us how we are going to negotiate our agreements,” said Norwood Jewell, director of UAW Region 1C.

“We are not cold to the fact that there is an issue out there with autism, but we have to be responsible about it. We have to figure out a better way than a legislative mandate that is going cost more than people can afford.

“With health care costs going up and people’s wages going down, we need to take more time to look at other options,” he said.

The mandate would have provided expensive therapy for an estimated 15,000 children with autism spectrum disorders in Michigan.

At least 23 states, including Arizona, Colorado, Connecticut, Florida, Illinois, Indiana and Texas, specifically require insurers to provide coverage for the treatment of autism.

By the time Remi was 3, his parents, who have two other children, knew something was different.

His speech was delayed. He struggled with play. He didn’t make eye contact. Everyday smells made him vomit. Bright lights caused meltdowns.

Remi had biweekly speech therapy and visits with a specialist in Ann Arbor that cost $500 each time.

Today, outsiders may not recognize Remi has a neurological disorder.

He greets his mom with big tight hugs. He lists favorite things, such as Pokeman, his friends and swimming.

But his reading skills are a couple of grade levels behind.

And his trouble expressing feelings can mean outbursts at any time caused by simple changes, such as a substitute teacher or messy art projects, that cause a sensory overload.

Last year, his mother was called more than a dozen times to pick him up from school.

“There are a lot of hard days,” Remi said quietly.

But the behavioral therapy his mother thinks would help costs $175 an hour.

The state House overwhelmingly approved the mandate in 2009, but the bill never made it to the Senate floor.

“I think a lot of hearts were broken that night because we were so close,” said Sen. John Gleason, D-Flushing. “I think there’s an immeasurable cost to our society when we don’t help sick kids. We haven’t turned our back on polio. We haven’t turned our back on cancer. These parents need hope.”

In May 2009, Blue Cross Blue Shield of Michigan became one of the first insurers to offer employers the option to purchase coverage for autism treatment programs.

The benefit covers children ages 2 to 5 who use a treatment called Applied Behavioral Analysis (ABA) but includes only up to 60 treatment sessions.

“We saw a need in the community and moved to find a way to address it,” Blue Cross spokeswoman Helen Stojic said in an e-mail, adding that the insurer does not support any mandates.

Critics of the bill argue that schools already offer a wealth of services.

Districts provide speech and occupational therapy, and aides help children in classrooms.

But families say it’s not enough.

Amy Daleo, president of the Autism Support Group of Genesee County, said sons Austin, 16, and Andrew, 10, have Asperger’s syndrome and struggle with social skills, such as in reading body language and facial expressions. Everything is literal.

To get therapy covered, she has had to list services under different conditions, such as depression.

“People don’t understand that it’s a neurological disability. It’s just not recognized the same way. Early treatment will make a big difference,” said the Mundy Township single mom. “These kids want to be included just like everybody else. People just have to give them a chance.”

Autism spectrum disorders affect one in every 110 American children and one in 70 boys, according to the U.S. Centers for Disease Control and Prevention.

“It’s an epidemic,” Daleo said. “More and more kids are being diagnosed every day, and it’s not going away.”