Decoding Nick's Law
MetroFamily Magazine
July 2009
Pam Pollard
“The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them; that’s the essence of inhumanity.” - George Bernard Shaw
Is autism in Oklahoma an issue of compromise or indifference? Those on the side of House Bill 2027—otherwise known as Nick’s Law—are passionate and clear on one point: without insurance coverage for autism spectrum disorders, it won’t matter how many new Board Certified Behavior Analysts are enacted in this state through Senate Bill 135. There will be very few families who can afford to pay them.
“There is some confusion on what Nick’s Law is. Since I wrote it, let me explain,” said Wayne Rohde, father of autistic son Nick Rohde, for whom the bill is named. “It is just legislation to require private insurance companies (not federal employees, the self-insured or Medicaid) to provide insurance coverage for autism. No taxpayer money will pay for services. The parents (of autistic children) pay for the insurance premiums. There could be taxpayer money in the bill to pay for the premium increases, if any, for state employees. The fiscally conservative thing to do is to allow private insurance coverage, so the taxpayers will not be forced to pick up the tab.”
The other side of the autism/insurance debate emphatically believes that House Bill 2027, Nick’s Law, may positively impact a small minority but negatively impact a vast majority of premium-paying individuals.
“Wayne [Rohde] and his family have been very effective advocates of getting autism coverage,” said Senator Clark Jolley (R-Edmond). “The debate over cost to everyone else’s insurance premiums and whether it would result in more people being uninsured is an important one and should not be overlooked.”
These concerns prompted the introduction of Senate Bill 135. The Senate Bill has two main goals: first, to increase the number of trained specialists to treat autism spectrum disorders; second to encourage the open insurance market to adjust coverage based on the demand of services.
Senate Bill 135 also includes provisions that establish a state license for National Board Certified Behavioral Analysts and increased training for the evaluation and diagnosis of autism spectrum disorders. The bill seeks to enhance Sooner Start, an early intervention and treatment program for children up to age 3 with disabilities and developmental delays. An extended measure of the law looks to replicate Early Foundations, an autism treatment and outreach model through trained providers currently funded through the State Department of Education.
Supporters of Nick’s Law feel that Senate Bill 135 is similar to their own proposed bill but with one major exception: the insurance mandate is removed. “My opinion is that Senate Bill 135 is a waste of taxpayer’s money,” said Rohde. “It provides money to study applied behaviors, yet we have nearly 25-plus years worth of research from the United States Department of Education, the United States Department of Defense, the United States Surgeon General and many more credible sources.” Rohde feels that the spending allocated by the bill is wasteful. “There is no direct help to children and their families,” Rohde said.
Senate Bill 135 was unanimously passed by the Senate on April 21, 2009, after the House Republican majority blocked the insurance coverage mandate for Nick’s Law. House Bill 2027 (Nick’s Law) was killed and banned from the floor for two years after the House Economic Development and Financial Services Committee made a do-not-pass recommendation on it.
Not all Oklahoma lawmakers believe, however, that Senate Bill 135 was the appropriate measure to take. “While the legislature has passed measures to increase providers for families with autism, the fundamental fact remains that many families cannot afford the services to treat their loved ones without insurance coverage,” said Senator Kenneth Corn (D-Howe).
When all is said and done, the argument that squelched Nick’s Law while advancing Senate Bill 135 is a disagreement between the costs of funding insurance for families dealing with autism. “This bill will… give families dealing with the disorder more options for treatment,” said Senator Ron Justice (R-Chickasha). “Every step we can take towards early detection and treatment of autism spectrum disorders will greatly benefit those with autism and their families. In the long run, early intervention and proper treatment will reduce the costs associated with autism, and will help Oklahoma’s youth with this disorder be able to reach their full God-given potential.”
The debate over Nick’s Law has brought questions about autism and insurance to the forefront in Oklahoma. The full impact has yet to be seen, but we can all be assured that the debate will continue, both in Oklahoma and on the national level.
Jeana Pollard is a freelance writer, mother of two daughters (Paley and Paven), and wife of Matt Pollard.
Link to MetroFamily
Showing posts with label Sen Clark Jolley. Show all posts
Showing posts with label Sen Clark Jolley. Show all posts
Sunday, July 5, 2009
Saturday, June 13, 2009
Wayne Rohde: A father with a cause
Norman Transcript
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 scarter@normantranscript.com
Copyright © 1999-2008 cnhi, inc.
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 scarter@normantranscript.com
Copyright © 1999-2008 cnhi, inc.
Sunday, January 27, 2008
Nick's Law fights for autistic's rights
Published: January 11, 2008 11:10 am
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.
Nick's Law fights for autistics' rights
James CoburnThe 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.
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