Struggling to cope with costs of autism

Sun April 13, 2008
Struggling to cope with costs of autism
By Michael McNutt Oklahoman Capitol Bureau

Bob and Liza Greve say they're like many parents with autistic children.

They find ways to cut expenses to pay monthly behavioral and medical treatment bills of $3,500 to $5,000 for their 5-year-old son, Gabe. ..."And we borrow money,” Bob Greve said.

The Edmond couple and other parents had hoped last week to talk about their burdens to a House committee. But twice in as many weeks, Rep. Ron Peterson, R-Broken Arrow, the committee chairman, refused to allow them to speak, although others were allowed to speak on other bills.

A measure that would have required insurance companies to cover treatment costs for autism failed to be heard by a House committee by Thursday's deadline.

Wayne Rohde, who has tried for two years to get a bill passed, said an amendment requiring autism coverage has been attached to at least one bill awaiting action in the Senate.

Rohde had been scheduled to meet with House Speaker Chris Benge late last week to talk about what happened during Peterson's meeting and on possible ways to get legislation that requires autism treatment coverage passed. Benge, R-Tulsa, canceled the meeting because of a conflict, his spokeswoman said.

Rohde's 10-year-old son, Nick, has autism. A bill that would require insurance companies to cover autism treatment has been dubbed "Nick's law.”

Bob Greve said the cost of health insurance provided by his company is about $500 a month, but his son's treatment isn't covered.

"These children that can't get these treatments and can't afford the therapies, they won't be functioning adults,” said Vincent Hart, the father of twin 4-year-olds, Aidan and Sean, who have autism. "They won't be able to hold down a job. They won't be able to complete an education. They're going to be wards of the state and they're going to cost the taxpayers a great deal more money for the help they're going to need as nonfunctioning adults than if we help these children who desperately need the help now.”

Hart, of Norman, said he and his wife, Eimile, feel blessed they can afford treatment for their sons. "I just feel so sorry because I know how we struggle with the costs, just the strain that it brings to a family,” he said. "Autism just sucks all the air out of the room.”

The Greves said medical intervention has helped Gabe sleep through the night. Therapy is helping him learn to speak and to use the bathroom, they said.

"Our children are not throw-away kids,” Liza Greve said. "The intervention, the money that goes to our children is going to help them. They are going to help all of us as taxpayers. There are stories all over the nation and world of children actually losing their autism diagnosis after years and years of therapy and consistent medical treatment.”
Bob Greve said generous parents are helping them with the treatment costs. "We've downsized our home,” Liza Greve said. "We drive old cars. We don't take vacations. We don't eat out.” And they borrow money. "I don't know how much longer we can,” he said.

More than 30 parents gathered at the state Capitol each of the past two weeks to appeal to legislators to advance a measure that would require insurance companies to pay autism costs.
They weren't given the chance.

Sen. Jay Paul Gumm, D-Durant, the author of Nick's law legislation, had attached the measure as an amendment to several bills, hoping they would get heard in House committees.
Peterson, chairman of the House Economic Development and Financial Services Committee, blocked the amendments from being heard and also used procedural moves to prevent amendments with similar language from being discussed in his committee.

Peterson also did not allow parents to speak, although he had accepted and asked for public comment on all other bills during the two meetings parents and supporters of the autism measure showed up for. Peterson said he's concerned mandates increase the cost of insurance and make insurance less affordable for Oklahomans. Adding coverage of autism treatment to state-offered insurance policies would cost about $6 million annually, according to a fiscal analyst.

"I'm not against any specific mandate, I'm against mandates in general,” Peterson said. "It's my assertion that these are very difficult bills to deal with. They're highly emotional.”
Peterson has authored House Bill 3111, which would place restrictions on new health insurance mandates. The bill is intended to take a closer look at the cost of insurance mandates in an attempt to reduce the price of health insurance, which could offset price increases for Oklahoma policy holders.

"This health care is a difficult issue and solutions are going to have to be based on personal responsibility and consumerism being injected more into the system than it is now,” he said. "Otherwise we're going to end up with socialized health care and that's, I think, the track we're on right now.”

His measure did not get heard by a Senate committee, and he's been hesitant to hear any bills that would require insurance companies to provide additional coverage. Bob Greve said he found the way Peterson treated him and other parents baffling. "The fact that parents have to defend inclusion; what would seem like more the natural thing to occur would be for insurance companies to be up here defending exclusion,” he said.