Photo by Mike Belleme

Editor’s note: This is the third piece in a series about Western North Carolina children and adults living with autism. Read about an Asheville program providing social activities to children and adults with autism, view a photo essay about the program and consult a list of resources for more information.

A bill sponsored by a retired pediatrician would require all health benefit plans in North Carolina to provide coverage for the diagnosis and treatment of autism spectrum disorder, a range of neurodevelopmental disabilities.

Democratic state Sen. William R. Purcell, of Laurinburg, filed Senate Bill 115. The bill includes the mandate that “no insurer shall terminate coverage or refuse to deliver, execute, issue, amend, adjust, or renew coverage to an individual solely because the individual is diagnosed with one of the autism spectrum disorders or has received treatment for autism spectrum disorders.”

Blue Cross and Blue Shield of North Carolina, the largest health insurance provider in the state, already provides medical coverage for the diagnosis and treatment of autism, according to spokesman Lew Borman.

BCBSNC has 3.7 million customers, he said, with about one out of every three people in the state having coverage through the health insurance plan. BCBSNC administers the plan for teachers and other state workers.

The company’s coverage includes doctor’s visits, specialty provider visits, physical therapy, occupational therapy, speech therapy and prescription drug therapy, Borman said.

“We don’t want to confuse people into thinking that we don’t cover people with autism already because we do,” he said. “But there is a particular piece of this proposed legislation that we oppose, and that’s how it relates to ABA therapy.”

BCBSNC’S medical directors determined that applied behavior analysis, or ABA, therapy, to be an educational rather than a medical therapy, he said.

But Jennifer Mahan, director of government relations for the Autism Society of North Carolina, said she takes issue with this stance.

“The troubling thing for us,” she said, “is that there are decades of medical research behind this kind of therapy indicating it is medical and not educational.”

The Autism Society of North Carolina also supports the Senate bill to ensure that other insurance providers operating in the state cover individuals with autism. David Laxton, director of communications for the Autism Society of North Carolina, said 24 other states have similar laws in place.

As a lifelong condition, autism can result in long-term, costly health care treatment. According to a study published in 2008 in the Journal of Autism and Developmental Disorders, individuals with autism have average medical expenditures that exceed those without autism by $4,110 to $6,200 a year.

Michele Lemell of Asheville, the mother of a 13-year-old daughter with a form of autism known as Asperger’s syndrome, said she knows first-hand the struggle to not only get a diagnosis for her child but also to get health insurance coverage for that diagnosis and subsequent treatment.

“It took nearly 18 months for me to get reimbursed for about $6,000 in costs for physical therapy assessments and speech and language assessments for my daughter,” said Lemell, whose daughter was diagnosed with Asperger’s in December 2009.

“It was literally a daily battle on the phone,” she said, as well as letters and faxes “back and forth.” At the time, Lemell said, her daughter was covered through her ex-husband’s health insurance plan with another company, not BCBSNC.

The insurance company “fought us tooth and nail,” she said. “They finally paid us back our portion of everything but psychological visits to Mission (Health System).”

Lemell said she hopes the bill making health insurers in North Carolina cover the diagnosis and treatment of people with autism becomes law.

“What I’d say to the health insurers is, please support us,” she said. Getting health insurance coverage for people with autism, she said, “shouldn’t be that hard.”

Editor’s Note: An earlier version of this story shared information the Centers for Disease Control summarized on its site about the lifetime costs of autism. The Centers for Disease Control inaccurately summarized the journal report it referenced. Information in this article has been revised.

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Kathleen O'Nan is a contributing reporter to Carolina Public Press.

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