Family that led unsuccessful push for autism insurance in Oklahoma leaves state

From The Daily Oklahoman:

The Rohdes led a group of autistic children's parents who traveled regularly to the state Capitol to seek legislation to require insurance companies to cover autism.

The bill to create "Nick's Law” won favor in the Senate but was defeated in a House committee in February 2009. The major sticking point was a House-funded study that concluded that insured Oklahomans' rates could increase nearly 20 percent under an autism mandate, a factor proponents vigorously disputed.

Now the Rohdes' battle is over. The family is moving to Minnesota this month.

Wayne Rohde (pictured) said now his family will be able to buy insurance covering autism treatment in a home setting. He said he's disappointed that autism is breaking Oklahoma families and that some children may not be getting adequate treatment.

"It's the children,” Rohde said. His son, Nick (pictured), the boy behind the proposed law, sat nearby at the family table, humming an erratic tune only he understood and waving like a conductor. The 12-year-old occasionally took a bite of pot roast from a plastic fork held by his tutor, Caleb Braudrick.

"We don't want handouts. We want to be able to provide for our children through an insurance model,” Rohde said. He said the family's cost of analysts, tutors, therapists and medications is nearly $40,000 out-of-pocket yearly.

Rep. Jason Nelson said he understands the Rhodes' frustration.

"If I had a child with autism I would fight as long and hard as I could to get what they need,” he said, adding that the Legislature did well under trying budget constraints.

Nelson said while the Legislature was considering Nick's Law, he heard from families with autistic kids who said they wouldn't benefit from a mandate because they were either uninsured or had a federal job that excluded them from the coverage.

Proponents said Nick's Law would save about $1 million in human services costs if autistic children were treated and that insurance rates would increase by less than 1 percent. More than 6,000 Oklahomans are autistic, yet only 568 likely would receive benefits, according to the cost analysis used by Sen. Jay Paul Gumm, D-Durant, in pushing the autism mandate.

"There's no silver bullet,” Nelson said. "The mandate didn't pass but I thought we needed to do something ... to help all these children.”

Nelson authored a bill, now signed into law, that provides scholarships of up to roughly $14,000 yearly to educate autistic or otherwise disabled children in private school.

Gumm, who filed the original Nick's Law legislation in the 2008 session, said he will file a similar measure for the upcoming session.

"Certainly the fight will continue,” Gumm said.

Rep. Mike Brown, R-Tahlequah, whose version of Nick's Law was killed this session, said it will be a continuing battle with the opposing Republican House caucus and insurance industry.

House Speaker Pro Tempore Kris Steele, designated by House Republicans to be the speaker for the next legislative session, last year authored legislation that became law designed to expand services for autistic children through state programs that train doctors to diagnose and treat autism.

"I've still got to push forward,” Brown said.

Blue Cross Blue Shield still considers autism therapies experimental, but the company changed its policy in May 2009 to offer families an option to cover treatment sessions for children ages 2 to 5.

Rohde said the limitations on age and therapies covered make the insurance ineffective for most families.

A 2006 Harvard University study estimates society pays about $3.25 million to provide lifelong care for an autistic child. Rohde said with good, early treatment, much of that cost could be avoided. But he said the individual human cost is what really matters. He said Nick is improving, and in the big picture, the move is necessary.

"We have to take care of our son,” he said.