Nick's Law fights for autistic's rights

Published: January 11, 2008 11:10 am

Nick's Law fights for autistics' rights

James Coburn
The Edmond Sun

EDMOND — Nicholas Rohde’s blue eyes appear to engage with the world as most boys do. He enjoys baseball with his brother and trips to the zoo. The only difference is that Nicholas’ life is filtered through the world of autism.

“He’s just a very loving kid,” said his father, Wayne Rohde.

Autism is a complex developmental disability that typically appears in children before age 3, according to the Autism Society of America. A complex neurobiological disorder, it impacts areas of the brain responsible for social interaction and communication skills.

Nicholas was born 30 weeks into Robyne Rohde’s pregnancy and has a non-identical twin brother, Austin, who was born 10 days before him. Austin does not have autism.

“Since then we have been very active in searching for treatments, therapies and education possibilities for him,” said Wayne Rohde, a self-employed computer software salesman.

Because autism is not covered by private insurance, families live with increased financial stress.

“We pay $1,000 a month in medical premiums, yet our insurance pays for nothing for our son,” said Robyne Rohde, a business continuity planner for the University of Oklahoma Health Sciences Center.

Mandating insurance coverage

Wayne and Robyne Rohde are urging state lawmakers to support the proposed Autism Insurance Equity Act. Informally known as Nick’s Law, the proposed legislation is named after Nicholas, who was diagnosed with autism at age 4. It is sponsored by Sen. J. Paul Gumm, D-Durant, Sen. Patrick Anderson, R-Enid, and Rep. Colby Schwartz, R-El Reno.

If Nick’s Law becomes a reality, it will provide insurance coverage for the early diagnosis testing of autism and medications until the child becomes 21 years of age, Wayne Rohde said. A financial cap would cover $75,000 of behavioral therapy per year.

“We’re also bringing a term cap for the first three years of coverage,” his father said. The insurance coverage would be continued after three years only if a primary care physician or board certified therapist reports there is clinical progress every six months.

The Rohdes said they are among the 75 percent of parents with autistic children who search out of state for physicians specializing in autism because most Oklahoma physicians do not treat autism with advanced levels of specialized training.

Nick’s Law will increase the numbers of autism practitioners in the state, Wayne Rohde said, “because now they can get paid at compensation rates that they can stay open.” He said similar bills passed in Texas and South Carolina increased autism medical specialists.

“Nicks’ Law creates high-paying, skilled labor because if you have a practitioner, a doctor that opens up, he’s going to need an office manager and nurses. It’s an economic engine,” his father said.

Sen. Clark Jolley, R-Edmond, said Rohde’s effort is the greatest effort anybody has made to educate the Legislature about autism. And Jolley said he’s still learning more about it. “There’s a lot of education that will need to happen,” he said.

However, Jolley said he is concerned about forcing mandates on insurance companies as required by Nick’s Law. He doubts Nick’s Law will be passed in the next legislative session.

“When asking for an insurance mandate, it’s asking for coverage for something that not everybody needs,” Jolley said. “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.

Mandating that every insurance company in the state cover autism ultimately would cost the consumer too much money and prevent more people from being able to afford health insurance, he said.

Modest premium increases in other states

The Oklahoma Institute for Child Advocacy has placed Nick’s Law as “a high priority for the legislative session this year,” said Anne Roberts, executive director of the Oklahoma Institute for Child Advocacy.

“What I found out is other states where this coverage has been mandated, the premium increases have been very modest, ranging from 44 cents a month to $4.10 a month,” she said.

South Carolina, Texas and Indiana already have passed laws similar to Nick’s Law.

In 2007, The Council for Affordable Health Insurance, a research and advocacy association of insurance carriers, reported insurance mandates regarding autism will have little impact on the cost of health insurance premiums for consumers. The report assessed the incremental cost of state-mandated benefits for autism in 10 states would be less than 1 percent.

Before approving Indiana’s autism legislation, the Indiana Legislative Services Agency figured additional premium costs as ranging from 44 cents per contract per month to $1.67 per contract per month. The cost estimates for Indiana, South Carolina and Wisconsin would cost about $50 annually per policy holder.

A quiet epidemic

The Centers for Disease Control announced in 2007 that 1 in 150 people has autism. One in every 100 boys has autism. Autism is a quiet epidemic growing at a rate of 10 percent to 17 percent per year, according to the U.S. Department of Education.

“Eighty percent of these kids are under the age of 14,” Wayne Rohde said. “This tidal wave is coming. And it’s going to hit at the same time the first big wave of baby boomers decides to retire. So, when these kids hit the ages of 18 and 19, and they have to start applying for Social Security benefits and other state benefits at the same time — boom. We’ve got a perfect storm of financial nightmare proportions.”

Early treatment intervention is the best way to prevent taxpayers from picking up the tab for a lifetime of care for these children at a cost of nearly $3.25 million per child, Wayne Rohde said.

“Our little guy is beautiful and for a child who can only say ‘Mama,’ he is speaking volumes by reaching out and touching so many lives in our state,” Robyne Rohde said.

Jolley proposes UCO professorship, internships

A separate piece of legislation to be sponsored by Jolley is designed to bring more behavioral therapists specializing in autism to the state. The legislation would provide a professorship and paid internships to the University of Central Oklahoma for behavioral therapists in the state.

“I think it would help drastically the parents of a child with autism to do a lot of early intervention, which has shown can really allow for these children to have a fairly normal life without the huge problem that may resolve when treatment doesn’t occur,” Jolley said.

There are fewer than five behavioral therapists with autism experience in the state, Wayne Rohde said.

Jolley also proposes that the Oklahoma Council on Law Enforcement Education and Training devise sensitivity training for officers on patrol to better identify people with autism.

“The main goal for everybody participating in this discussion is to make sure these children are provided with the behavioral therapy that will assist them in becoming productive members of society rather than forgetting them and leaving them behind,” Jolley said.