High cost of autism puts treatment out of reach for many

Willey Gale, a 13-year-old Coralville boy with autism, has his own way of doing things, and in all likelihood, he will never talk to his family in a typical way.

But with speech treatment, he has made progress.

"We can have conversations with him now, and that's important,” said his mother, Casey.

Treatment and related expenses for an autistic child like Willey are expensive - some of the most effective cost $50,000 annually - and many parents cannot afford them. Recently, Iowa legislators tackled a bill that, if passed, would have given families access to up to $36,000 in annual coverage for each child who is under 21 and has autism or a related disorder.

The bill could still become part of a broader piece of legislation called a “standings bill,” which is often addressed at the end of a session. But supporters say they will continue their effort next year if necessary.

In Iowa, no one has made an accurate count of autistic children, said Sue Baker, an autism service consultant for the Regional Autism Services Program's Child Health Specialty Clinic at The University of Iowa. But the Iowa Autism Council is working on a survey to provide that number, and it is expected to be complete by July.

Early treatment likely saves money

Many experts agree treating autism early is vital and could eventually save taxpayers money, because early treatment helps children develop skills faster and more completely.

Children's brains absorb treatment better when they are younger, said Todd Kopelman, a psychologist at the University of Iowa Hospitals and Clinics and a board member of the Autism Society of Iowa. He said treating children effectively can be difficult when they have a long history of symptoms.

State Sen. Daryl Beall, D-Fort Dodge, who introduced a full-coverage autism bill last year that got cut back to cover only state employees, has a grandson, Drew, who has autism. The bill Beall introduced became law in January.

Non-state employee families can apply to pay for treatment through a Medicaid program, paid for with state funding. The initiative is called the Home and Community Based Waiver Programs.

But Josh Cobbs, chair of the Iowa Autism Council, said some families aren't eligible for these waivers, because they don't meet the criteria. For example, to qualify for an “intellectual disability” waiver, their child's IQ can't climb too high, he said.

Insurers oppose coverage for all

The Iowa Association of Business and Industry, which reviews policies and laws affecting business, is against autism coverage, said John Gilliland, senior vice president of the Des Moines organization. As a rule, the group opposes any legislation mandating coverage for a specific illness.

Gilliland said legislators introduce many bills each year for individual health concerns, including bulimia and hearing aids, as well as autism, and the costs would quickly add up. In 2009, 13 bills for various types of required health insurance coverage were introduced, he said.

The autism legislation wouldn't be effective in all cases. It would not apply to businesses with more than 100 employees that are self-insured. It would likely have the most impact on small businesses with under 100 employees, who use small-employer plans, Gilliland said.

“They don't have a lot of leverage when they're trying to buy health insurance,” he added.

Requiring autism coverage would likely increase insurance premiums by one dollar per person, per month, and the money would go into a pool for autism claims.

But this funding likely wouldn't cover all costs, said David Van Ahn, owner of Heartland Investments and Insurance in Clive. He said insurance companies would need to raise prices to cover the additional costs.

Van Ahn has a 44-year-old daughter, who is quadriplegic. He remembers feeding her with an eye dropper when she was a baby, because she couldn't swallow.

“I am torn between the issues,” he said.

Van Ahn said he understands that families of children with disabilities need help. He supports state funded programs that help families afford treatment, such as Medicaid, and also supports looking into options that would use state funding.

Many on their own

Monica Ryan-Rausch, who works at an after-school program in Cedar Rapids with children with Asperger's, a form of autism, said many parents pay for autism treatments on their own.

Ryan-Rausch works with middle school and high school students at Four Oaks and said treatment outside special education at school is important, in part to help with social behaviors. She said autistic children - including those with higher IQs - may have trouble talking to people and making friends.

Autism can cause a lot of stress, agreed Willey Gale's mom Casey. But she said appreciating Willey's personality makes the situation easier.

Treatments help, she said, “but they don't make him like you and me.”

She said Willey prefers to be alone, and he often drools too much. He ignores rules, or doesn't understand them - sometimes, she can't tell which.

Casey hopes Willey can someday contribute to society. But she also embraces the skills and qualities he already has.

“We love his drooling; we love his yelling; we love his jumping,” she said.

- By Holly Hines

Holly Hines is a senior at the University of Iowa majoring in journalism, English, and art.

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