Health care reform may benefit parents of children with autism

From The Dallas Morning News:

The health insurance overhaul passed this spring came as a relief to parents of autistic children, many of whom spend thousands of dollars out of pocket for treatments that no one else will cover.

The new federal regulations will prohibit spending caps, prevent insurers from excluding pre-existing conditions and behavioral health care, and extend dependent care to age 26. The rules are potentially good news for families struggling with costly treatments that can blur the line between medical and educational expenses and don't end with childhood.

Plano mother MariAnn Gattelaro has spent years fighting with insurance companies for coverage of her 7-year-old autistic son, Sam. She says nobody wants to take responsibility for $20,000 in treatments.

"The insurance companies are telling us that therapy is educational," she said. "And the school district is telling us that it's medical."

Autism spectrum disorder is a neurological illness that impairs the brain's ability to develop normal cognitive, social and communication skills. The Texas Department of Aging and Disability Services reported that 11 out of every 1,000 children in Texas have the disorder.

Many questions remain about autism, said Tom Currey, president of the National Association of Insurance and Financial Advisors.

"It's one of those conditions that's like an open checkbook," he said.

Gattelaro is well-aware of the costs. She, her husband and two other sons have been covered through COBRA since her husband switched jobs. She said the family spends about $5,000 a month on treatments for Sam, only about $1,000 of which is covered.

Wendy Fournier, president of the National Autism Association, said autism is a medical condition and insurance companies should cover treatments such as applied behavior analysis, or ABA, which involves tutors who try to change behavioral patterns.

"Autism is a medical diagnosis," she said. "Denying the medical treatment is discriminatory."

Misconceptions?

When it takes full effect, the new law should help settle the matter, along with questions about spending caps and pre-existing conditions.

"For too long, children with pre-existing conditions have been locked out of the insurance market, and too many parents have spent sleepless nights wondering how their children will get the care they need," White House spokesman Nick Papas said. "The Affordable Care Act will provide relief to these children and their families."

But that relief may not arrive quickly or take the form some are expecting, said Jannie Herchuk, a partner at the Deloitte international accounting and consulting firm, which advises large insurers, hospitals, physician groups and biotech companies.

"This was highly touted as being something that would be new protections," she said. "And it is. But there's misconceptions here."

Children with a pre-existing condition will be able to get health insurance in September, and those who have been uninsured for at least six months can get insurance through a state-run, federally funded high-risk pool beginning July 1, the White House has said.

Adults to benefit

Autistic adults are more likely to see big benefits in four years, Herchuk said. But some relief will kick in this year for patients such as Ben Burns.

At 21, Burns is starting to age out of his current coverage under Medicaid and his mother's insurance, said his father, Dan Burns. Recent attempts to find the severely autistic Dallas man a job have been unsuccessful, and the school bus stopped coming last spring.

"That was like falling off a cliff," Dan Burns said. "Suddenly, we were faced with the unfamiliar world of autistic adults."

The new bill will allow him to stay on his mother's insurance until age 26. His family also hopes to benefit from the expansion of Medicaid and removal of payment caps.

Different takes

While the Gattelaro and Burns families are able to afford thousands of dollars in out-of-pocket expenses for treatment, low-income and uninsured residents must rely on state-run clinics such as LifePath Systems in Collin County.

Chief operations officer Mary Fredericks said many of the clinic's clients either can't afford insurance or have jobs that don't offer it. She said she's hopeful her clients will see greater access to coverage because of the new law.

"This is going to be a great benefit," she said.

How much relief the new legislation will provide is up for debate. Right now, there aren't a lot of guidelines for such a large and complex bill, Herchuk said.

"The challenge is that there's going to be lots of interpretation needed, and different parties may interpret the rules differently," she said.

Burns said he is still looking into the specifics, but he is hopeful. Gattelaro is more skeptical.

"Because of my experience with insurance companies, they will find loopholes in the hopes that you're just going to give up," she said.