For some Michigan families, autism help in short supply

Considering the fact that Detroit, Michigan has the highest rate of autism in the world, you would think there would be more services for its children. But, then again, how is it there are people who are calling for the end to entitlement programs like child welfare but refuse to consider what would happen to the children.

For some Michigan families, autism help in short supply

Mahdi Noureddine's parents can reach him now in his own world -- one that before had seemed cloaked in an invisible, impenetrable shell of autism.

With more than two years of specialized therapy five times a week at the Children's Hospital of Michigan Autism Center in Novi, the 6-year-old from Dearborn Heights now makes eye contact and easily asks to visit his grandparents or to have macaroni and cheese for dinner.

He's lucky. Four months after a new state law began requiring insurance companies to cover the cost of his therapy, thousands of other autistic children are still waiting to access services.

The state has only 44 board-certified behavioral analysts to provide the kind of therapy that Mahdi receives and that autism experts say is the most effective for many children. Plus, there are only a handful of centers around the state that can offer a thorough diagnosis of autism -- a step necessary to tapping into therapies covered by the state's three largest insurers.

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"The challenge is expanding fast enough," said Diane Chugani, director of the autism center where four board-certified behavior analysts serve the Noureddine family and 77 others. There is a waiting list several months long while the center tries to add three more certified therapists.

It's not clear how many Michigan children are autistic, but at least 15,000 children and young adults in Michigan are receiving services through schools for autism, said Colleen Allen, president and CEO of the Autism Alliance of Michigan.

Eastern Michigan, Western Michigan and Oakland universities are working to expand programs to graduate more therapists.

As it stands now, Eastern graduates about 10 therapists a year, but could double that number, said James Todd, professor of clinical psychology.

At WMU, the psychology department has requested funds to hire faculty that could train more therapists, said Wayne Fuqua, professor and chair of the psychology department. Now graduating 15-20 therapists a year, that school also would like to double its graduates.

There's no problem in attracting students. Starting salaries for a master's-level therapist specializing in the treatment of autistic children is between $60,000 and $100,000 a year. As for jobs?

"There's a lot of demand for board-certified behavioral analysts across the country," he said.

Last week, Blue Cross Blue Shield of Michigan relaxed its rules for evaluating and diagnosing autism. Until July 31, parents whose children already have a previous diagnosis of autism can sidestep the new comprehensive diagnosis through a center such as the autism center in Novi; rather, the children can be evaluated through a licensed physician or licensed psychologist.

"We're hoping that will shorten some of the wait times," said Helen Stojic, spokeswoman for Blue Cross Blue Shield of Michigan, the state's largest commercial insurer.

Meanwhile, families continue to wait.

For years, parents have been on their own to find and pay for applied behavioral analysis therapy, which can cost $125 an hour or more.

Many families simply can't afford it, said Ben Duff of Sault Ste. Marie, whose debt for therapy for his 6-year-old son Brian had climbed to more than $14,000 by last year. There are times when the family can pay off the bills, but it's difficult.

"We just make the payment to the hospital sometimes, and sometimes to collections," he said. This summer, they face probably another $5,000 in therapy, he said. "But you do what you can for your child."

After the law passed, he and other families rejoiced that insurers would now cover bills that had forced some families to mortgage homes, take on extra jobs and declare bankruptcy.

But now, the Duff family faces another roadblock. Even though his Blue Cross Blue Shield of Michigan policy covers the cost of diagnosis and follow-up therapy, the trip for the diagnosis is at least a five-hour drive away, and therapy that most likely would be needed several times a week is three hours away, said Duff, founder of Cornerpieces, an advocacy nonprofit for children with autism.

"There are a lot of families who have just kind of given up on it," he said. Instead, he's forced to rely on helpful, but limited, speech and occupational therapy provided by the school district.

Lt. Gov. Brian Calley signed the bill into law last year, with his daughter, Reagan, 6, who is autistic, standing by.

He said Friday that he is frustrated at the slow growth of services, but it was expected. A lack of therapists across the country means that Michigan can't simply recruit from elsewhere, but has to train more. And that means several years before it has enough therapists to meet the need.

"It will take a minimum of three years ... it's a difficult and frustrating wait," he said.

Insurers have signed contracts with about half the state's therapists. But they say they must step cautiously. They want to make sure they contract with therapists who are properly certified and who can specifically work with autistic children, said Rick Murdock, executive director of the Michigan Association of Health Plans, which represents many of Michigan's insurers.

After all, insurers will be footing the bill for services that can run up to $50,000 a year for some kids. "You have self-proclaimed providers and you have those who have the expertise and credentials," he said.

Allen of the Autism Alliance said: "These families are frustrated. They waited for this legislation to pass. Then they waited for October for the law to be effective, and then they waited until January until new policies were effective. They're still waiting."

In Detroit, Dionne Foster-Sanders, 41, who works in a doctor's office, said she hasn't been able to get a call returned to get her daughter Destiny Sanders, 9, an appointment for diagnosis.

All this is adding to her frustration and helplessness as her daughter grows up with the quirks -- the social awkwardness and sudden loud outbursts -- that make people stare. With each passing month, her best chances for help slip away, Foster-Sanders said.

"My heart breaks every day," she said.

For Mahdi's family, insurance has started to kick in, saving the family the estimated $5,000 a month in therapy bills. The 6 1/2-hour-a-day therapy has been crucial for Mahdi, said Dr. Wassim Noureddine, an internal medicine doctor St. Joseph Mercy Hospital at Ann Arbor.

At first, "even if you told him something, it was like he was in his own world," the father said. "He would look at us, but he would have a hard time. It wasn't that he was necessarily being defiant, we just couldn't help him."

Allen said it's necessary to move slowly -- to make sure diagnoses are appropriate and children are getting the best therapy.

"It's very important to get the diagnosis right. Autism looks like a lot of disorders and a lot of disorders look like autism. So there should be some rigor around (the diagnosis)," she said.

Dr. Lori Warner agreed. She said she's frustrated, too.

As director of the Beaumont Center for Human Development's HOPE Center, she said Friday that 29 children were on the waiting list for therapy -- but just a few spots open each semester.

The insurers "are learning. We're learning. But it's costing these kids time."

Contact Robin Erb: 313-222-2708 or rerb@freepress.com

More Details: Where to find therapy

For information about therapy and other services in Michigan for children with autism, go to www .autismallianceofmichigan.org or call 313-964-2620.

Several centers offer comprehensive diagnosing, though individual therapists are located elsewhere in the state, too. Here are some of the large centers in Michigan that are covered by at least one large insurer — Blue Cross Blue Shield of Michigan, Health Alliance Plan or Priority Health:

Children’s Hospital of Michigan Autism Center