Donovan Johns was 3 years old when he was diagnosed with autism after his parents noticed he struggled with speaking, expressing his needs and interacting with others.
His condition has since improved dramatically, his parents say, after therapies that have cost them tens of thousands of dollars.
Donovan’s family was part of a class-action lawsuit against Blue Cross Blue Shield of Michigan that led to a landmark settlement and to it being the state’s first insurer to offer coverage for autistic children.
But most Michigan insurers still don’t cover autism therapies, a situation many are trying to change through lawsuits and legislation to take the financial burden off families. Services, which can cost up to $50,000 annually, are not covered because many insurers deem the therapies experimental. Activists counter research shows many are proven to be effective, especially when implemented early.
“There’s a lot more to be done,” said Warren resident Chris Johns, Donovan’s father. “This condition is devastating, not just from a financial perspective but from an emotional and relationship perspective. It just destroys families.”
Autism is a neurological disorder that impairs a person’s social, emotional and communication skills. About 1 in 100 American children have the disorder, according to federal studies, including an estimated 14,000 in Michigan.
Though the Michigan House has passed legislation to require insurance companies to cover the costs of therapy for autistic children, and a bipartisan task force is conducting hearings around the state, some autism activists believe it won’t become law. That’s why attorneys are ready to file lawsuits against Michigan’s Medicaid program and other insurers to get children therapeutic coverage.
“We’re hoping that once we achieve enough of these victories that all of the insurers will realize this therapy is mainstream and effective and should be authorized,” said Gerard Mantese, a Troy attorney who represented the class in the suit against Blue Cross Blue Shield and is working on litigation against other parties.
Two weeks ago, a Wayne County Circuit judge denied a motion by Blue Cross to dismiss a case, paving the way for a $125,000 settlement filed by Cheryl Matthews, Mantese said. Matthews, an Oakland County circuit judge, alleged the insurance company wrongly refused to pay claims totaling $38,000 for therapy for her autistic son.
The ruling comes as Blue Cross recently mailed checks totaling $680,000 to nearly 100 families after it agreed to settle a class-action lawsuit last year in which families said they were wrongly denied reimbursement for a program for their autistic children.
Even though the insurer still regards autism therapies as experimental, the company changed its policy in May 2009 to offers employers the option to buy autism coverage for their entire group. The coverage offers 60 treatment sessions, or about 12 weeks, to families with autistic children ages 2 to 5.
“We felt there was a need out there, so we moved to change our policy,” said Helen Stojic, a Blue Cross spokeswoman.
Soon after, legislation requiring insurers to pay for better autism treatment was approved by the Michigan House, but it has not moved in the Senate.
Activist Neil Carrick, a Westland resident, has enlisted attorneys to sue Michigan Medicaid to pay for services for his 4-year-old son, Zachary Stacer, who has a form of autism and was developmentally delayed by months.
After paying thousands of dollars out of pocket for therapies, he says you can hardly tell anything is wrong with his son. But that’s because he acted early, and was able to afford some services. But that’s not the case for everyone.
“The way it is right now, if something doesn’t change,” Carrick said, “children are going to grow up and not get the care they need.”
Since 2001, 21 states have passed laws requiring insurers to provide evidence based, early intervention autism therapies, according to Autism Votes, an initiative of the advocacy group Autism Speaks.
New Hampshire has also passed laws and is awaiting the governor’s signature.
The movement comes as research is demonstrating that interventions work, said Lorri Unumb, senior policy adviser and counsel for Autism Speaks.