By M. Scott Carter
June 13, 2009 01:33 am
— Transcript Staff Writer
OKLAHOMA CITY -- Wayne Rohde didn't want this.
A self-described conservative Republican, Rohde and his wife, Robyne, came to Oklahoma about 10 years ago to be near Robyne's parents.
That was in 1999.
A short time later, Robyne gave birth to fraternal twins, Austin and Nick. Austin was born at 28.5 weeks; Nick was born at 30 weeks. And, like many other parents, Wayne and Robyne were busy with life and raising their boys.
"The boys were born in October, and they came home in December," Wayne said. "And it took them a while to catch up developmentally."
Things rocked along OK until Nick was about 20 months old.
"Then Nick hit a wall," Wayne said.
The pediatrician told them not to worry.
"We noticed that Nick couldn't eat crackers, or play with toys correctly," Wayne said. "We got concerned. The pediatrician said he'd be fine, he was just slow catching up."
The pediatrician was wrong.
Nick's development seemed to stop. And Wayne and his wife began a frantic search to find out what was wrong. Eventually, after more than a year, they would discover that Nick suffered from autism.
"I took over a year to make an appointment to see a therapist," he said. "If that would have been down to a month, chances are we could have recovered."
That diagnosis changed their lives.
"My wife wouldn't even say 'autism,'" Wayne said. "She called it the 'a-word.' And I had no idea what that meant. No one knew. We'd never went through anything like this before."
Because Nick's treatment was delayed, Rohde said, his recovery is much slower. "By delaying the diagnosis and treatment, well, one day is bad, but one year is horrible."
Rohde said it took so long to discover Nick's problem because there were no qualified professionals in Oklahoma. "Screening is one thing, but getting the proper diagnosis can take a long time."
There was little information available, he said.
"We were given two things, a copied piece of paper about autism and a prescription for Ritalin. That's modern medicine, 'There's a pill for that.'"
Then came the medical bills -- huge medical bills.
Bills that Wayne's medical insurance wouldn't pay.
Rhode estimates his family pays more than $5,000 a month to treat Nick.
"We got denial after denial," he said. "And, I guess it was at that point that I got mad as hell."
And it was at that point that Wayne Rohde changed from conservative businessman and father to hard-core political activist.
First he put his fist through a wall.
"The insurance companies were telling us 'no,' the banks were beating on our door. We were gonna loose the roof over our head. The car company was going, 'hey, we're sorry but where's our money?' It was more than I could take."
After his initial expression of rage, Wayne Rohde did something different -- he became an activist.
He and his wife surrounded themselves in research about autism coverage and he began approaching members of the state Legislature about changing state law to compel insurance companies to cover autism treatment.
"I kept asking why the insurance company won't pay," he said. "We're paying them thousands of dollars each month and they're not covering Nick. What's the deal?" Rohde continued his questions, then formed connections with parents across the country who had similar problems.
"I found families in other states," he said. "Loose networks of people."
Slowly, the groups made progress. Several years ago, Indiana was the first state in the country to require autism coverage, then in 2007, a similar bill in Texas became law.
"That gave me the green light," Wayne said.
Just like his son, Wayne hit a brick wall, too.
After convincing his brother to front him the money for plane tickets, Wayne traveled to other states as they conducted legislative hearings on autism coverage. He gathered data and information, then he traveled to 23rd and Lincoln.
"I spent six months visiting with legislative leaders on both sides of the aisle," he said. And while he found some lawmakers who would listen, Rohde said the state's Republican leaders flatly told him no. "The state GOP said 'no.' They said insurance rates would go up. I said that's disingenuous."
Putting his family life -- and his software company -- on hold, Rohde eventually would team with Durant Democratic state Senator J. Paul Gumm to develop Nick's Law, a legislative proposal that would require insurance companies in Oklahoma to cover autism treatment.
"I visited with Senator Gumm. He and his wife had just had a baby and his wife just happened to be researching autism," Wayne said. "The stars lined up and we took off."
Rohde, Gumm and others began their fight to pass Nick's Law. They started in 2007 and didn't expect to get very far.
"I knew that first year we would have to educate people," he said. "And I didn't expect the bill to pass."
The Legislature proved him right.
While Nick's Law generated a great deal of public debate -- and media coverage -- the measure failed to clear the House of Representatives.
But Wayne Rohde refused to give up.
After their initial political battle, Rohde and Gumm tried again. And this time, things got ugly. Instead of a debate about the issue, Rohde said Republican lawmakers turned rude and defensive.
"We did get further than people thought we would," he said. "And we got a lot of people interested."
And, in a strange twist of fate, one GOP critic helped in that effort.
Rohde said when state Rep. Ron Peterson slammed the door in the faces of a group of 20 parents of autistic children, "people got pissed off."
"It was all because of Rep. Peterson," he said. "After he slammed the door on us a lot of people contacted us and said, 'Wait a minute, these people are parents up here.'"
With public pressure growing, Rohde said some GOP members began to fight back.
"They would get really mad when a group of us would go up there and walk the hall. Some lawmakers said they were too busy to talk. We stopped one, who told us to make an appointment with his assistant. We tried that and the assistant said the lawmaker was too busy, could we come back in the summer? But session would have been over."
And while Rohde said some members of the Legislature were concerned and did listen, he said some many legislative leaders were 'just downright rude.'
"Rep. Gus Blackwell got really pissed off when I brought 20 parents into his office and two television stations," he said. "He was furious." Rohde had the same criticism for Edmond state Sen. Clark Jolley.
"Senator Jolley sent out e-mails saying I was unprofessional and not courteous," he said. "Well I say 'bite me, Senator, you're up here to represent your people and you won't even allow them to come into your office and talk to you, so bite me."
Later, Jolley would tell the Edmond Sun that Rohde's effort was "the greatest effort anybody has made to educate the Legislature about autism."
"There's a lot of education that will need to happen," he said. However, Jolley said he was "concerned" about forcing mandates on insurance companies as required by Nick's Law. "When asking for an insurance mandate, it's asking for coverage for something that not everybody needs," Jolley told the newspaper. "And you're asking for everybody else to bear the cost of it, and that's what universal health care is."
Jolley said in providing coverage for autism and other expensive health-care issues that may not be provided for by insurance companies, he would want to look at expanding pools of insurance, providing increased incentives for medical savings accounts and other options prior to having to enact a mandate.
"I would rather see us provide greater medical savings accounts," he said.
Rohde said Jolley was simply speaking for the insurance companies.
"I have come to understand that the Oklahoma Legislature isn't set up for the public good. It isn't set up for public input as other states are. In other states, they actually have committee hearings. But the Oklahoma Legislature isn't set up that way. All the outcomes have been predetermined."
Legislative leaders, he said, prevented Gumm and other supporters of Nick's Law from bringing in data and expert witnesses to testify at committee hearings.
"It's all set up for the lobbyists, because they are the only ones who can afford to be up here every day," he said. "Sure parents might come up here once in a while but they don't have a clue to what's going on. The GOP has dug in their heels on this issue."
During one meeting, Rohde said members of the Oklahoma Conservative Political Action Committee told him to move to a different state if he wanted better coverage.
"I was told to do that be the OCPAC," he said. "But we're not going to. We don't want to move away from our family. We're not going to punish our kids by moving."
Still, while Rhode hasn't gotten Nick's Law passed yet, he has been a driving force in educating the public about autism -- a complex developmental disability that typically appears in children before age 3, according to the Autism Society of America.
"It's a complex neurobiological disorder. It impacts areas of the brain responsible for social interaction and communication skills," Rohde said.
In fact, this weekend, the Defeat Autism Now conference is taking place at Norman. And though Rohde said he won't be able to make all of the two day event, he did plan on sitting in on several sessions.
And, he added, he'll continue his fight.
"I'm not giving up. Right now 13 states have passed an autism mandate. It's only a matter of time. I don't mind the fight. I'll step into the damn arena, because I know I'm on the right side."
M. Scott Carter 366-3545 firstname.lastname@example.org
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