New "Nick's Law" bill gets shuffled into legislative "graveyard"

By Andrew W. Griffin

Red Dirt Report, editor

Posted: February 23, 2011

reddirtreporter@gmail.com

OKLAHOMA CITY – Oklahoma families with autistic children hit another roadblock this week when they discovered the GOP-led House leadership made a last-minute decision to have renewed discussion of “Nick’s Law” moved from the Insurance Committee to the Rules Committee.

The committee was scheduled to meet on Thursday and folks with autistic children had planned to speak to the committee members before learning of the switch. Now, many are having to regroup and reassess with the knowledge that the deadline to get bills out of committee is next week.

It was in January when Rep. Mike Brown (D-Tahlequah) filed a bill, HB 1624, that would allow voters to decide in the form of a State Question on the ballot as to whether insurance companies would cover cost of treating autism for children 21 and younger.

Brown spoke to Red Dirt Report from his office at the Capitol on Wednesday morning and said that the long-term costs to the state will be “astronomical” if these autistic-affected children aren’t treated appropriately before they become adults.

Brown highlighted the sad story of 7-year-old Savannah Martin an autistic child from Lawton who drowned in a pond on Sunday. Brown said the story about Savannah, featured in The Oklahoman, noted how the girl was going to New York state and receiving treatment as well as getting therapy at the ACI Learning Center in Edmond.

The point Brown was making was that autistic children like Savannah respond to therapy and that more can be done for them in Oklahoma.

“She is one of hundreds of children in Oklahoma receiving some kind of help, while others aren’t,” Brown said, adding, “And the argument that (Nick’s Law) will drive insurance companies out of state is false on its face.”

“Let the people of Oklahoma decide if they want to take care of these children now” or later, Brown said. “There is wide support (of Nick’s Law).”

Discussing this change of legislative venue with Red Dirt Report was Wayne Rohde, the father of Nick Rohde, the autistic boy who inspired “Nick’s Law” a few years ago, and has since moved his family from Oklahoma to Minnesota so Nick could get the treatment he needed when Nick’s Law failed to get legislative support.

“People are disappointed,” Rohde said, joking over the phone that he was “stuck in a snowbank” up in the Twin Cities, where he now lives. “ I planned to be there. I wanted (Nick) to come up to the Capitol. Of course everybody remembers what happened last year.”

Rohde was speaking of the decision in 2009 by the House Economic Development Committee to torpedo any chance that the House would get to vote on Nick’s Law. It was a bitter defeat for families who have children battling autism and were seeking coverage.

And now, with House Speaker Kris Steele (R-Shawnee) inexplicably announcing that HB 1624 was being reassigned to the Rules committee, Rohde and others who support Nick’s Law are concerned that HB 1624 will die in the Rules committee.

“(Rules) is traditionally the graveyard,” Rohde said.

An attempt to reach Steele for comment on Wednesday was unsuccessful.

Even though Rohde is hundreds of miles away, he has been keeping in touch with Rep. Brown and friends with autistic children.

Rohde conceded that there is precedent that a State Question should go to Rules, but switching committees “this late in the game,” he noted, proves “They’re not interested in dealing with it.”

“Basically you run out of time,” Rohde said.

Twenty-one other states have passed similar bills into law and as noted in a recent Edmond Sun article, a poll taken in 2010 for SoonerPoll revealed that nearly 80 percent of Oklahomans favored Nick’s Law.

As reported at Oklahoma Watchdog last August, Rohde told that news website that when these Nick’s Law-styled legislation has passed in other states, “free-market health care” kicks in and “..takes over because insurance companies go out and find qualified therapists and set their own rates.”

Rohde was also quoted at Oklahoma Watchdog as saying, “Most of these states see insurance coverage for autism and other special needs conditions as a fiscally conservative approach to health care, a true pro-life position, and the morally responsible thing to do.”

And now, Rohde and other supporters of Nick’s Law are simply hoping to speak their mind and in a committee setting it’s often difficult to do.

“This is a complex issue and we need to have some adult conversations,” Rohde said. “But we’re not able to have them. It’s disappointing.”

Rohde noted how many of the states bordering Oklahoma have already passed Nick’s Law-styled legislation, with Arkansas “getting close to passing it.”

But with no one able to figure out what is motivating Speaker Steele, considering he is not returning calls to Rep. Brown or other interested parties we have learned, one can only speculate what will ultimately happen.

What Rohde does know is that if these kids – who will soon be adults – don’t get the help they need, many could end up homeless or “clogging the jails” and affecting taxpayers in the long term.

But right now there doesn’t appear to be the political will let the people decide if Nick’s Law should become law. Additionally, Rohde suspects that Speaker Steele may be holding off dealing with the autism-and-insurance issue until he is out of his current leadership position.

“I think Speaker Steele doesn’t want to address it until he terms out,” Rohde said.

Copyright 2011 West Marie Media

Rep Mike Brown introduces HB 1624 Vote of the People for Nick's Law

Fox 25 News Oklahoma City
Jan 21, 2011

Oklahoma City - Rep Mike Brown has filed HB 1624 which will allow the voters of Oklahoma to have the final say on Nick's Law if passed by the state legislature.

Click here to view the video.

Fight for “Nick’s Law” continues beyond state’s borders; Doak and Crawford comment

By ANDREW W. GRIFFIN

Oklahoma Watchdog, editor

Posted: August 22, 2010

andrew@oklahomawatchdog.org

OKLAHOMA CITY — It was last month that long-time Oklahoma resident Wayne Rohde left their home in Edmond and took his family to Minneapolis, Minn. where he and his wife Robyne could get the sort of help that their autistic son Nick needs – help that was not available in Oklahoma.

Rohde is a passionate advocate of Nick’s Law, which was legislation a couple of years ago that looked to require insurance companies to cover health care services related to autism.

Although he is now in Minnesota and getting the kind of care there that he could not here, Rohde is following the issue back here in Oklahoma.

As Rohde noted in a recent press release, “There are 21 states that have passed similar legislation (to Nick’s Law, which failed here) and with New York waiting for their governor’s signature, that will make 22 states. Most of these states see insurance coverage for autism and other special needs conditions as a fiscally conservative approach to health care, a true pro-life position, and the morally responsible thing to do.”

This past week, Rohde spoke to Oklahoma Watchdog about his battles with the legislature and the seeming disinterest in the subject by the incumbent Insurance Commissioner Kim Holland. That said, Rohde noted that he has received some interest in support of Nick’s Law, or legislation like it, from the two Republican insurance commissioner candidates John Doak and John Crawford.

“John Crawford and John Doak reached out to me – Doak yesterday and Crawford last week — and they said they want to talk about Nick’s Law and autism. Doak inquired as to whether there were any other options. It was interesting.”

Rohde said that Doak has come out publicly against insurance mandates. And he noted that the anti-big-government Tea Partiers that surround Doak will “give him hell” if he comes out in support of a mandate.

“I was pleasantly surprised,” Rohde said of Doak’s support. “The thing is that when you start getting into (the topic of Nick’s Law) and anybody sits down with myself or any other family with autistic children, they begin to realize there’s some merit to this. There’s a lot of merit to it. I’ve been promoting this as a conservative approach to health care.”

Contacted by Oklahoma Watchdog, Doak, man with over 20 years in the insurance field, said he is indeed against mandates but that he does want to analyze all the options out here.

“I’m not afraid to look at this,” Doak said. “I don’t like mandates … but I want to look at what has been done in other states and come up with a plan of my own.”

Doak noted that his own daughter, who is now 14, has had three open-heart surgeries and understands what it is like to “navigate the minefield of health care.”

“As Wayne outlined to me, my focus is to get by Tuesday. Then I want to sit down and do an analysis and do a dialogue with these companies and say if you’re offering this in Minnesota and it’s not a mandate, why can’t we do that here?” Doak said. “(Wayne Rohde) tells me that in Minnesota there are some things that have been done that are not mandates. I’m interested to learn how they have accomplished this.”

“I am running a campaign on ideas … on one that will address issues that affects families like Wayne’s,” he said. “I’ve been in over 50 counties in Oklahoma, individuals are seeking a candidate who will address the needs of people in Oklahoma and as a regulator, use that to the advantage of the people.”

Added Doak: “This is a need Oklahomans have. When it affects kids, we need to understand what we can do.”

Rohde appreciates Doak’s candor and his compassion, particularly in light of his daughter’s health issues. Rohde said that often autism is covered, mandate or not, because lawmakers in other state’s have been personally affected by a health issue, usually affecting a child they know.

Crawford, meanwhile, talked to Oklahoma Watchdog on Sunday evening and said that he had talked to Rohde a few weeks ago and was “really impressed” with the information that Rohde had presented to him.

“He had some really interesting data,” Crawford said. “He has some actuarial studies that gives some strong indications it’s an affordable benefit.”

Crawford said Rohde has “the best unique approach for the long run. He’s talking about going down the road 20 years from now and allowing these people to be viable members of society.”

Noting that the information was “timely,” Crawford, an actuary, said he is encouraged, if elected, to work on the information he has received and then bring it forward to the insurance companies.

“if ht numbers come up and it’s reasonable, let’s look at it,” Crawford said. “That’s the fair approach.”

As Rohde explains it, a “social net” needs to be available to families and that if the insurance companies would work with the state on a specific “insurance model,” and develop a network of providers, “the free market takes over.”

An increasing number of states are addressing insurance coverage for autism. He said they realized that eventually these children will grow up and be adults and require more state services. Why not, Rohde said, have the states like Oklahoma mandate the coverage and get these afflicted children the help they need before it worsens over time, particularly before the economy sours any more than it already has.

“If we don’t address this issue, we will have thousands of kids in Oklahoma who will grow up and rely on caregivers,” Rohde said. “The first big wave will hit ina couple of years. They’re going ‘ding, ding, ding’ and require more services and taxpayers pick up the tab.”

Continuing, Rohde said, “Jails will fill, health institutions in the state will be full … more homeless people.”

That is where Doak and Crawford come in. Both men, Rohde said, “were aghast at the underbelly of what has happened” in regards to Nick’s Law and how his family and other Oklahoma families with autistic children have been treated.

“The past three years at the Capitol we have tried to pass Nick’s Law. We have been hit by procedural rules in the House designed to shut us down specifically. In the 2009 legislative session we got a committee hearing the first day of session.” Rohde said this was simply a tactic which would get it out of the way – a “Do Not Pass” motion meant for Nick’s Law.

“It was designed to hit us and stop us. Rep. Kris Steele made sure everybody voted the correct way,” Rohde said with a tinge of bitterness in his voice.

Rohde is frustrated he had to leave friends and family in Oklahoma and make a new home in a new state. He said the change has been difficult for Nick, who requires a routine. Nevertheless Minnesota is an “autistic-friendly” state and Nick is getting the help he needs.

“A legislative mandate is not socialism,” Rohde said. “It’s telling the insurance company that ‘you must cover it.’ Free market health care takes over because insurance companies go out and find qualified therapists and set their own rates.”

Asked why the insurance companies are against these mandates – Blue Cross and Blue Shield in Illinois, New Mexico and Texas all have mandates – Rohde said the insurance companies have a monopoly and “they are free and clear to do what they want.”

Rohde said that in March 2010 SoonerPoll.com poll, three questions were asked about “the diagnosis and treatment of autism.” 79.5 percent of respondents supported health insurance to cover diagnosis and treatment of children with autism. Another question revealed that over half of respondents would “oppose” a candidate who was against such insurance coverage and in the final question, 67 percent supported “a state ballot initiative to make a law requiring health insurance to cover diagnosis and treatment of children with autism.”

Clearly, Oklahomans desire the goals Wayne Rohde and his family are seeking. Additionally, it is interesting to see that both Republican insurance commissioner candidates have sought more information on the subject and appear supportive of Rohde’s efforts, despite efforts by some conservative activists to stop Nick’s Law and related legislation.

“I told Doak and Crawford that the reason the costs (for insurance coverage) were not as high is that you want to throw as much as you can at them and scale it down as they get older. Highly-functional Asberger’s kids may not need (coverage),” he said, noting that “autism is a spectrum disorder and has different degrees of severity.”

Rohde points to the influential Oklahoma Conservative Political Action Committee, led by Charlie Meadows. Rohde said that he has attended some of their group meetings and has spoken before OCPAC, the group that endorsed John Doak.

“If you want to have a true conversation about (Nick’s Law), distance yourself from Charlie Meadows,” Rohde said, noting that at a meeting where he discussed the issue, Meadows allegedly told Rohde “why don’t you move to another state.” Rohde said he retorted, “Hey, your group isn’t getting any younger.”

“Charlie’s a nice guy, but when he get into the meeting he likes to dominate,” Rohde said, adding, “He can’t be a dominant player because he has very narrow views.”

Interestingly, Mark Croucher, the Tulsa Republican who came in third in the Insurance Commissioner’s race, was on “The Scott Mitchell Show” this weekend on KOCD 103.7 FM and when asked by this reporter about mandating health insurance for autistic children, he said he opposes mandates but sees other options as viable.

Croucher, by the way, has endorsed Crawford, saying, that “Crawford has the actual experience” when it comes up between a matchup of Holland against either Crawford or Doak.

Rohde compliments Sen. Jay Paul Gumm (D-Durant) and Rep. Mike Brown (D-Tahlequah), two Oklahoma legislators who have championed Nick’s Law.

Back to Doak and Crawford, Rohde said both men “are interested genuinely” and that he hopes when it comes to the weeks and months leading up to the Nov. 2 general election that this discussion about Nick’s Law and mandated coverage will come up in the race.

“I’m simply asking them to have a discussion and an open debate about it,” Rohde said. “This issue is not going away. Oklahoma has to address it.”

Copyright 2010 Oklahoma Watchdog

Family at Front of Autism Insurance Push Forced to Move Out of State

Posted: Jul 12, 2010 9:36 PM CDT
By Colleen Chen, NEWS 9

OKLAHOMA CITY ---

Click here for the video.

The Rohde family said the $40,000 per year they are forced to spend out of pocket on Nick's treatments, including special therapy session, have gotten to be too much.

Wayne Rohde is sad his family has to leave Oklahoma but said his son Nick will receive better treatment in Minnesota because there are more therapists and medical staff equipped to handle autism cases in states that have coverage mandates.

The Rohde family has spent years leading the fight to get autism covered by Oklahoma insurance companies, but they say they cannot afford to fight any longer.

Oklahoma's autism coverage mandate effort is called Nick's Law. It's named after Wayne Rohde's son Nick. The Rohde family said the $40,000 per year they are forced to spend out of pocket on Nick's treatments have gotten to be too much.

"We knew we were in trouble financially. We were selling off everything we have just to support what happens here. You don't have assets. You liquidate everything. We liquidated our retirement accounts," Rohde said.

It's why the family will move to Minnesota by the end of July where the state is more autism friendly.

"We don't want to leave. It's bittersweet, but we have to. Nick's going to be doing so much better," Rohde added.

He said that's because there are more therapists and medical staff equipped to handle autism cases in states that have coverage mandates.

Learn about federal and state autism initiatives | Read about Nick's Law

According to Autism Speaks, Oklahoma is now one of only five states to have not pursuing autism insurance reform. The Rohde family said being forced out of their home is not what Oklahoma is or should be known for.

"Oklahoma is much better than that, but unfortunately politics is getting in the way of decency," said Rohde.

Insurance reform supporters plan move

Edmond Sun, July 8, 2010

EDMOND — An Edmond family who has led the charge for autism insurance reform in the state is planning to move.

Wayne Rohde announced in an e-mail and Facebook e-mail that he, his wife Robyne and their sons, Austin and Nicholas, will move to Minnesota at the end of the month. His youngest son, Nicholas, is the namesake of Nick’s Law, which did not gain final legislative approval a year ago. The law would have mandated that insurance companies cover autism health care costs in Oklahoma, and was the center of a bitter partisan fight at the state Capitol.

“While we are very excited to go to a state that is autism friendly and we will be able to provide the greatest amount of education and medical care for our son Nick, we are saddened to leave Oklahoma and the many friends that we have had the pleasure of meeting and knowing,” Wayne Rohde wrote.

He encouraged those who remain in Oklahoma to continue the pursuit for autism insurance coverage. He cited the 21 other states that now have autism insurance coverage and thanked Sen. Jay Paul Gumm and Rep. Mike Brown for their efforts to pass Nick’s Law.

“Most of these states see insurance coverage for autism and other special needs conditions as a fiscally conservative approach to health care, a true pro-life position, and the morally responsible thing to do,” Rohde wrote.

OK Watchdog Executive Director Jeff Raymond worked with Rohde at the Capitol for insurance reform.

“Through tenacity, a single-minded dedication to his son and force of personality, Wayne Rohde united parents of children with autism and was instrumental in keeping health insurance reform and accountability in the public eye and on lawmakers’ radar year after year,” Raymond said Thursday. “Before I got to know Wayne, I had become cynical about the idea that an average person could bring about meaningful change. Wayne has restored my faith in one’s ability to make a difference. I have no doubt the changes he fought so hard for will reach Oklahoma one day.”

Rohde said he encourages advocates for insurance reform to get to know the bevy of new candidates running for political office this year and to let them know where constituents stand on the issue.

“There is a tidal wave approaching our nation regarding the large numbers of children with autism becoming adults in the next three to four years. Employment, housing, long-term care and many other issues will have to be addressed,” Rohde wrote.

Moving on Up

Want to announce to all of you that my family and I are moving from Edmond to Minnesota at the end of the month. While we are very excited to go to a state that is autism friendly and we will be able to provide the greatest amount of education and medical care for our son Nick, we are saddened to leave Oklahoma and the many friends that we have had the pleasure of meeting and knowing.

The battles at the state capitol for insurance coverage for autism (Nick’s Law) and other medical conditions for our children, teenagers, and adults must go on. We are very proud of the many families and parents that have given so much to move this state forward. We appreciate each and every one of you, for advocating for your kids and other family members, and for never giving up.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has” – Margaret Mead

Sen Jay Paul Gumm and Rep Mike Brown will continue the fight for Nick’s Law. These are men of great character and conviction. Help them and follow them. There are now 21 states that have passed similar legislation and with New York waiting for their governor’s signature, that will make 22 states. Most of these states see insurance coverage for autism and other special needs conditions as a fiscally conservative approach to health care, a true pro-life position, and the morally responsible thing to do. Continue that approach at 23rd and Lincoln.

There is an emergence of new candidates running for political office. Seek them out, get to know them, and talk with them. It is your responsibility to let your elected representatives know where you stand.

This state has so far to go but because of your efforts and from others, we have come a long way. There are those who have been advocating for many years prior to our recent efforts in the last 4 to 5 years. They are to be congratulated and honored. Learn from them. And there will be many to come after our efforts. Welcome them, teach them, and encourage them.

“Open your mouth for the mute, for the rights of all the unfortunate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy.” – Proverbs 31:8-9

We had the privilege of working side by side with many of you at the capitol and throughout the state fighting for Nick’s Law, reforming special education in our state, advancing public awareness of autism and special needs, and other issues related to special needs children and adults.

But there is so much more to do. Many of our children will become teenagers very soon and employment opportunities need to be expanded. Many of you are on the forefront of transition services, we thank all of you for your tireless work. There is a tidal wave approaching our nation regarding the large numbers of children with autism becoming adults in the next 3 to 4 years. Employment, housing, long term care, and many other issues will have to be addressed.

“It was once said that the moral test of our society, our government, is how we treat those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.” – Hubert Humphrey

So we say good bye to all of you. Best wishes for you and your families. God Bless.

Sincerely,

Wayne, Robyne, Austin, and Nicholas Rohde

Autism law draws advocates' praise

Previously, insurers could deny coverage for unrelated treatments.

By SUSAN HYLTON World Staff Writer
4/24/2010

Advocates for children with autism say that a bill signed into law Friday by Gov. Brad Henry is a good first step toward parity in health coverage for the disorder.

The legislation, added to Senate Bill 2045, requires health insurers to cover the same illnesses for autistic children as they do for children without the condition. The law came about after parents reported that medical coverage was denied for services having nothing to do with autism, such as playground injuries.

"This is a bill to stop any restrictions or discrimination against individuals with autism from medical or surgical procedures that are currently covered," said Wayne Rohde, whose 12-year-old son Nick was diagnosed with severe regressive autism when he was 4.

"The insurance companies needed to stop this discrimination. The leadership of both parties decided it wasn't right."

Rohde said insurance companies were limiting coverage for occupational and speech therapy for autistic children but not imposing those limitations for children without autism seeking the same treatment.

In one case, an autistic child was denied coverage for asthma treatments while an asthmatic child without autism was covered, Rohde said.

Christina Newendorp, development director at the Autism Center of Tulsa, who has two sons with autism, said parents had to decide whether they really wanted a diagnosis that could be used as a reason to reject medical claims.

Newendorp said the law won't require all insurance companies to cover the most effective treatments for autism, known as applied behavioral analysis, which can cost $2,000 to $4,000 a month.

That coverage was part of the 2009 failed legislation known as Nick's Law, named for Rohde's son.

"It doesn't address the larger issue of insurers out there who don't cover (autism) as a medical condition whatsoever," she said. "There's no logical reason for insurance companies not to consider autism a medical disorder. We're surrounded by states taking action on this issue. Oklahoma is dragging its feet."

With an estimated 1 in 150 children being diagnosed with an autism spectrum disorder, there could be a tidal wave of disabled adults in the future if nothing is done, Newendorp said.

"If we take action now, we can help turn these children's lives around so they can become independent adults," she said.

Rohde said that, with treatment, Nick moved from a severe form of autism to the middle of the spectrum.

He is still nonverbal, but he now recognizes words, feeds and dresses himself and is not completely dependent on others for his care.

He also plays with his twin brother, Austin, who does not have autism, his father said.

"Austin is very proud and introduces him to the neighborhood kids," Rohde said. "Austin knows how to communicate with him."

Click here to read the article.

79% of OK voters approve of Nick's Law

OK Gazette
March 31, 2010

SoonerPoll.com, run by Shapard Research, surveyed 1,000 likely registered voters statewide between Feb. 25 and March 8. The poll has a 3.1 percent margin of error. For those contemplating a run at political office this year, here are a couple of campaign tips based on the poll: Better do thorough research on autism, and, for God’s sakes, limit the booze.

A caring state
Oklahoma’s public health is a constant topic, with most indicators showing the state as one of the least healthy in the country. Partisan sides are drawing battle lines with a different medical issue.

The state does not require insurance companies to provide medical coverage for autistic children, a growing segment of the population. Debate in the state Legislature has been heated, with attempts to mandate such coverage. The Republican-controlled House and Senate have successfully thwarted all attempts at autism legislation. In fact, a bill has never even made it through either chamber for a vote.

But according to the poll, those opposed to such measures might want to keep their opinion to themselves. SoonerPoll found nearly 80 percent favor requiring health insurance to cover diagnosis and treatment of children with autism.

Gaddie, vice president of Shapard Research, said that number shows the autism side winning the public opinion battle.

“First of all, you have public acceptance that it is a medical condition that is deserving of insurance coverage, and that there is a moral obligation for insurance companies to engage in that type of coverage,” said Gaddie, an Oklahoma Gazette commentary writer.

This is some of the best news autism insurance advocate Wayne Rohde has received since taking on the fight. The poll is encouraging, but even he is surprised how much support is out there.

“I was kind of believing 60 percent would be a good number to have,” Rohde said. “When we hit higher numbers, it really hit home that it transcends across all political ideologies, economic status and religious views.”

Rohde has been pushing Nick’s Law on lawmakers, named after his autistic son, Nicholas.

Almost 54 percent of respondents said they would be more likely to vote against a candidate who did not support mandated autism insurance coverage. And 66 percent support a state ballot initiative to make a law requiring coverage.}

This is more ammunition for Rohde. He said his first two options are for insurance companies to start providing coverage on their own, or letting the Legislature adopt a law or put the issue on the November ballot.

But he is prepared to take it to the people.

“If the Legislature keeps turning their backs on the special-needs children, then we have to proceed another action,” Rohde said. “That is the signature petition initiative which I believed would be supported by a majority of Oklahomans. We are a very caring state for our neighbors.”

Click here to read the entire article and view charts.

Autism insurance bill, Nick's Law

Ed Doney Reporting , KFOR
March 9, 2010

OKLAHOMA CITY -- A bill that would require insurance companies to cover treatment for children with autism has cleared the House of Representatives in Missouri. However, the fight continues over similar legislation in Oklahoma, called "Nick's Law." The father of 12-year-old Nick Rohde, for whom the proposed law was named, wants Oklahoma to join surrounding states on the issue.

Wayne Rohde spends thousands of dollars every month for Nick's autism behavioral therapy, which is not covered by insurance and yet Nick is still unable to verbally communicate with his dad.

Wayne has unsuccessfully tried to get lawmakers to pass Nick's Law and is amazed at how Oklahoma is surrounded by states that do cover the disease like Colorado, New Mexico, Texas and Louisiana.

As Missouri inches closer to providing autism coverage, Wayne says that 65 percent of Oklahomans are on his side.

"So we know we're on the right track. This is the right thing to do," he says. "Unfortunately, our State Capitol is not listening to the people of Oklahoma."

Representative Mike Brown (D, District 4) has authored House Joint Resolution 1068, which would "refer (the issue) to the people for their approval" on the November ballot.

He says it's currently being held up in a rules committee.

Brown was disappointed Nick's Law was killed last year in the Economic Development and Financial Services Committee, which means it won't be heard again until 2011.

"You can't just turn your head, stick your head in the sand and say it's going to go away," Brown says.

He points to 15 other states that have already passed autism coverage legislation that, he says, has not significantly raised insurance premiums.

"Will there be slight (cost) increases? My gosh, there's astronomical increases every year in health care, with no reasons behind it," Brown says.

Representative Dan Sullivan (R, District 71) is Chairman of the committee that killed Nick's Law, last year.

"We see a movement in the market without government intervention that's taking care of these situations and moving in the right direction," he says.

Sullivan points out that Blue Cross and Blue Shield of Oklahoma is now offering autism coverage on their own; he wants other insurance companies to follow their lead, without an expensive government mandate.

If they don't follow suit?

"It would certainly cause us to go back to these other carriers and say, 'why aren't you doing this? Give us a reason why you're not doing this?'" Sullivan says. "We would rather have people do it in their own course of business rather than forcing and mandating them to do that."

Blue Cross and Blue Shield of Oklahoma released a statement Tuesday saying "(We) will provide a clinically reasonable benefit that doesn't unduly create a price impact on small employer groups and affect their ability to provide health care coverage to their employees. This action allows us to provide a benefit for proven therapeutic services while research continues to identify effective treatments or medical solutions for children with autism."

Wayne Rohde is disappointed Blue Cross and Blue Shield of Oklahoma's autism policy does not cover behavioral therapy, which he says is the most important and most expensive treatment for children.

"We're creating a bigger problem down the road in the next few years," he says, "where the taxpayers will be on the hook to provide long-term care for these kids as they become adults."
Copyright © 2010, KFOR-TV
http://www.kfor.com/news/local/kfor-news-autism-bill-nicks-law-story,0,2313781.story

Autism Coverage Fight Continues

Autism Coverage Fight Continues
Submitted by dochoc on Tue, 2010-01-19 18:30 Legislature

To check out OKIE FUNK blog, click here.

A proposed legislative bill would allow Oklahoma voters to decide if insurance companies should cover treatments for autism.

State Rep. Mike Brown (D-Tahlequah) has filed House Joint Resolution 1068, which if approved, would ask voters to add this amendment to the state constitution: “Any health insurance provider offering comprehensive coverage within the State of Oklahoma shall provide coverage for neurobiological disorders such as autism.”

The issue of providing coverage for autism has been a contentious one. Last year, Republicans killed “Nick’s Law,” a bill named for an Edmond youth with autism. His father, Wayne Rohde, and some legislators, had pushed for the legislation. But the bill was killed in a legislative committee.

Requiring insurance companies to cover autism is the right thing to do and some states already require such coverage.

The state GOP leadership argues this mandate could sharply increase overall insurance costs, but that’s not true. That argument is simply a distorted projection. Those who support coverage for autism argue that the increase costs would be minimal, which has been the case in other states.

Here’s a decent report on the cost issue.

Will the Republican leadership oppose Brown’s resolution? If the resolution passes, will the vested interests—primarily the health insurance industry—throw a lot of money into an election fight in order to deny coverage for those who suffer from autism?

Nick's Law proposal returns for 3rd session

by M. Scott Carter
The Journal Record December 29, 2009

OKLAHOMA CITY –

For Wayne Rohde, the third time could be a charm.

But the odds are stacked against him.Just weeks before the Oklahoma Legislature is set to reconvene, Rohde said he and state Sen. J. Paul Gumm, a Democrat from Durant, would try, once again, to pass legislation that would require insurance companies to cover patients diagnosed with autism.

Twice before the pair spent months fighting for their proposal – Nick’s Law.
Twice before they were defeated.

But this time, Rohde said, could be different.

“This will be the third straight session that Senator Gumm will introduce the legislation,” Rohde said. “We’re hopeful and optimistic that the Legislature will take a look at it.”

Under Nick’s Law, private insurance companies would be required to cover medically necessary and clinically proven medical treatments for children who have been diagnosed with autism by a licensed health care professional. Self-insured and federal employers would be exempt from the law and small business owners, he said, may choose to opt out of coverage under Nick’s Law.

The original bill, Senate Bill 1, remains in legislative purgatory in the Oklahoma Senate.

“This is very fiscally conservative health care,” Rohde said.

Rohde’s opponents say otherwise.

In May of 2008, Chris Benge, speaker of the Oklahoma House of Representatives, said he was sympathetic to the plight of parents with autistic children, but had concerns about Gumm’s legislation. Benge would later play a major role in killing Gumm’s proposal.

“The burden they carry is great, their medical costs are high and they are desperate to find hope for their children,” he wrote in a letter to Gumm. “However, it must be a priority for policymakers to evaluate public policy on a comprehensive basis. We must weigh the implications of our policy decisions as to how they will affect all Oklahomans. While it is clear that Nick’s Law would benefit families with autistic children, we must determine with certainty the impact this mandate will have on access to health care for all Oklahomans.”

Mandates such as Nick’s Law, he said, drive up insurance costs.
“There is substantial, reliable data that shows mandates do in fact drive up insurance premium costs and in turn force people to drop insurance because it is no longer affordable,” Benge wrote. “Contrary to the popularly held opinion, mandates have little effect on insurance companies because they simply pass their increased costs on to the consumer.”

Later, the Oklahoma Council of Public Affairs, a conservative think tank, distributed flyers that praised state Rep. Ron Peters, a Broken Arrow Republican lawmaker who prevented a legislative hearing on Nick’s Law.

Peters, the OCPA said, was simply defending free enterprise.

Still, Gumm and Rohde said they would continue the push for an autism mandate.

This year, in addition to Senate Bill 1, Gumm said he filed Senate Bill 1316, which would include autism coverage in the state’s high-risk insurance pool.
“If you go back and look at the history of why the high-risk pool was created, you’ll see that it was created for people who couldn’t get insurance coverage anywhere else,” he said. “If that doesn’t sound like something that is tailor-made for families like those with children suffering from autism, then I don’t know what is.”

Rohde said Nick’s Law would prevent insurance companies from shifting their insurance costs onto the backs of taxpayers.

“The companies are taking advantage of a monopoly situation and shedding the risk off on taxpayers,” he said. “By changing the law, you allow people, parents who are currently purchasing insurance, to have coverage under a health insurance plan instead of seeking out taxpayer-funded services.”

It’s the same type of law, he said, that has been adopted in several surrounding states, including Texas and Louisiana.
“
There’s a lot of opposition here,” Rohde said. “There are some in the state Legislature which say they don’t want government to tell a private industry what to do. But those same people voted for tort reform, which is telling a private industry what to do. So there’s quite a bit of hypocrisy there.”

If lawmakers don’t take advantage of the third attempt to pass Nick’s Law, he said, they will eventually pay high costs because those families will seek taxpayer-funded services.

“The long-term approach is this: If we don’t address the needs of these children at an early age, the taxpayers will be providing long-term medical care for these children – who will become adults – for the remainder of their lives.”

OF RED HERRINGS AND PINK ELEPHANTS

Posted on OCTOBER 14, 2009:
www.urbantulsa.com/gyrobase/Content?oid=oid%3A28245

OF RED HERRINGS AND PINK ELEPHANTS
Hoping against HOPE, state GOP sit quiet on insurance coverage for autistic
children

By Arnold Hamilton

The Chicken Littles were out in force recently at the state Capitol. One
after another, they traipsed before a House committee to warn of cataclysmic
consequences if voters approve SQ 744, the Oklahoma Education
Association-sponsored initiative that would require lawmakers to fund public
schools at the regional average.

It was a made-for-TV drama, which was produced and directed by Republican
legislative leaders who -- for the most part -- despise the OEA, the state's
largest teachers' union and the driving force behind the collection of
240,000 voter signatures that ensured the initiative appears on next year's
general election ballot.

Lawmakers didn't need to have staged two days of sky-is-falling hearings.
They already knew the abysmal revenue and budget numbers and the potential
impact of SQ 744. The truth is: They summoned agencies from across state
government to wail publicly about possible layoffs and service cuts as a
preemptive strike against the initiative, fearing its passage will
strengthen and embolden the OEA.

Actually, the legislative leadership's focus on SQ 744, also known as the
HOPE -- Helping Oklahoma Public Education -- initiative, is quite revealing.
Their No. 1 priority: Amassing and maintaining political power.

If it weren't so, they would be staging public hearings, and engaging in
vigorous public debate, on an issue that threatens to dwarf the $850 million
they claim the HOPE initiative would cost the state.

The pink elephant under the Capitol dome? Autism.

For more than three years, parents of children with autism have lobbied
state lawmakers -- unsuccessfully -- to require insurance companies to cover
treatment. Insurers, and their legislative allies, insist the costs would be
back-breaking. Meanwhile, families across Oklahoma are going bankrupt as
they scrape together every last penny for treatment that gives their
autistic children a fighting chance at a productive adulthood.

How does this impact the state budget?

In Oklahoma, about 500 children are diagnosed with autism each year.
Eventually, they will become adults, many eligible at age 18 for government
aid ranging from Social Security-related benefits to Medicaid. Their life
expectancy is the same as those without autism, and recent studies indicate
it costs about $3.25 million to care for autistic adults, not including
housing.

Federal and state governments will share the burden, but it's not difficult
to imagine -- given that 1 in 100 children are now being diagnosed with the
disease -- that autism could end up costing Oklahoma taxpayers in excess of
$1.5 billion a year or about one-fourth of the entire state budget.

Eighty percent of the Oklahoma children already diagnosed with autism are
younger than 16, meaning a perfect storm could be brewing: The oldest will
be reaching adulthood at about the same time as Baby Boomers begin tapping
Social Security and government health care programs.

"The first big wave is coming at us," said Edmond's Wayne Rohde, whose
11-year-old son Nick suffers from autism.

This is classic cost-shifting. Insurance companies calculate it's less
expensive to pour thousands of dollars into the campaign accounts of
sympathetic lawmakers -- those who will oppose any new coverage mandates --
than it is to cover autism, even though they'd probably just raise premiums
to protect the bottom line anyway. Moreover, why would an insurance company
willingly provide coverage for anything when the taxpayers are eventually on
the hook?

It won't make any difference to the current crop of legislative leaders who
are all-too-happy to do Big Insurance's bidding. They're going to be long
gone -- thanks to term limits -- by the time the autism tsunami hits the
state budget. It'll be somebody else's problem.

This is a serious public policy matter -- Oklahoma's version of the health
insurance reform debate in Washington. The Legislature hasn't approved an
insurance mandate since Republicans took control of the House of
Representatives in 2004. The last mandate? Insurers were required to cover
annual mammograms for women.

The conventional wisdom is that efforts to force insurance companies to
cover autism are a strictly partisan dispute: Democrats support the mandate,
Republicans oppose it. The reality is different: The GOP leadership is
hooked on campaign contributions from the insurance industry, and it uses
the money as a hammer to keep legislative Republicans in lock-step on the
issue.

It's clear, however, that GOP leaders are less-than-confident what would
happen if the measure reached the floor of either house for a straight
up-or-down vote. They're not taking any chances. In fact, House Republicans
this year killed the measure in committee where fewer votes needed to be
controlled to ensure the outcome.

Whether the mandate can be revived next year depends in part on the
parliamentary kills of minority Democrats. More importantly, it depends on
the willingness of enough Republicans to recognize that sound public policy.
It will cost much less to invest in childhood treatment than it will to, in
effect, warehouse thousands of autistic adults.

Fifteen states already have recognized the wisdom of this strategy. They
know there is scant evidence that mandating insurance coverage for autistic
children will significantly increase premiums or the number of uninsured.
What it does is protect families from bankruptcy and taxpayers from an
unnecessary burden.

And it ensures that thousands of lives won't be wasted: According to
studies, half the children that receive early, aggressive and consistent
intervention have most of their symptoms erased by grade school age.
Further, many won't end up needing to be placed in special education
classes.

Pay now or pay later.

-- Arnold Hamilton is editor of The Oklahoma Observer www.okobserver.net

Decoding Nick's Law

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

Oklahomans consider legal action after autism settlement in Michigan

eCapitol News

Author: William W. Savage III
Date: 06/22/2009

(OK) In the wake of a Michigan court's landmark settlement regarding the denial of autism coverage, parents of Oklahoma children denied coverage in the same manner are considering the possibility of filing their own lawsuit locally.

"We've got several people who we're in the middle of studying [the cases of] about filing a suit against Blue Cross Blue Shield [of Oklahoma] and other insurance companies," said Wayne Rohde, the Edmond father who has spent the past two legislative sessions advocating a state mandate for autism coverage for insurance companies. "We've been looking at it for the last two or three weeks. We're in the process now of rounding up parents who have denials [and] clarifying their denial process."

Pursuing litigation became a more realistic option after Blue Cross Blue Shield of Michigan announced Friday the news of a settlement between the company and about 100 families who had joined in a class action suit against the state's largest insurer.

The $1 million settlement also includes a provision that BCBS of Michigan will cover the therapy at the center of the suit - applied behavioral analysis - for employers with group mental health policies, according to reports in the Detroit Free Press.

Coverage of ABA, as the therapy is known, was denied to the Michigan children on the basis that it constituted "experimental" treatment.

"The important part of this lawsuit is that a court through this settlement has determined that ABA services are not experimental, as Blue Cross Blue Shield and other insurance companies like to classify it," Rohde said. "That's what we've been debating for years. They've even gone to the length of calling [ABA] educational, meaning it's not their responsibility and it's the public schools' responsibility."

That was the position taken by BCBS Oklahoma on Monday when asked about the Michigan lawsuit and the company's announcement late in 2008 that it would provide new autism benefits.

Nicole Amend, senior supervisor of public relations for BCBS Oklahoma, said BCBS Michigan is a different company and that BCBS policies in Oklahoma "have a specific exclusion related to autism which is not affected by this court decision."

"I think we have to look at it as far as, at this time, we don't intend to change our policies in response to the Michigan lawsuit," Amend said, adding that BCBS Oklahoma "is actually the only insurance company" in the state currently expanding its autism coverage.

The company announced in December that it would begin covering previously excluded autism-related expenses. Monday, Amend provided details of the new coverage, which she said will begin Jan. 1, 2010.

Amend said children will be covered from birth up to age 6 for the primary diagnosis of autism spectrum disorders, with additional coverage of evaluation, management procedures, speech therapy, physical therapy and occupational therapy. The benefit will have an annual maximum of $25,000 and a lifetime maximum of $75,000, she said.

"Those [maximum] amounts were chosen to allow the most comprehensive benefit with minimum impact to our members' premiums," she said, adding that the new benefits should not have a significant impact on premiums. "They weren't just arbitrary numbers that we threw out there."

But, Amend said the items covered by the new benefit "are not" ABA therapies, which Rohde said represent 80 to 90 percent of treatment costs.

"Those will not be covered under the autism benefit," she said. "Those programs are considered to be behavioral and educational training and not medical treatments. These are more [like] training modification programs, on the theory that behavior is learned through the theory of the interaction of the individual and the environment.

"So, we don't see them as medical treatment," she said. "Health insurance would provide for [situations] such as, you break your foot, you would need medical attention for that."

Rohde called those statements "just foolish."

"It has 20-plus years of science behind it to prove it is a medical treatment," he said. "This [lawsuit] does lay some very important groundwork for what we have always known to be true."

Rohde said the U.S. Department of Education, the American Academy of Pediatricians, multiple surgeon generals and others "have all accepted ABA as the proven therapy."

But, Amend said BCBS Oklahoma disagrees.

"There has been no well-constructed, randomized clinical trial that demonstrate ABA as being a more effective treatment when compared to a control group," she said.

Rohde said he believes the Michigan settlement undercuts that argument.

"I just see a lot more lawsuits popping up if BCBS and other insurance companies continue to deny this type of coverage," he said. "The ball is in their court, so to speak."

Asked whether BCBS of Oklahoma feared or expected local litigation as a result of the Michigan decision, Amend said: "I would say we're definitely watching. As health care is in the news lately, it's a topic we are very aware of."


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A Conservative Case for Nick's Law

As posted on Okie Pundit blog. Click here to read on the blog.

One of the most contentious issues for debate at the Oklahoma Legislature the past two sessions was about insurance mandates -specifically, autism insurance coverage known as Nick’s Law.

Over the last 2 years, we have seen 10 states pass autism insurance coverage legislation to join Texas, Indiana, and South Carolina. Now that 13 states have addressed the autism epidemic by providing insurance coverage for tens of thousands of children, Oklahoma is faced with over 6500+ children still without healthcare.

During the past legislative session, the House and Senate Leadership would not entertain discussion of Nick’s Law, rather they passed legislation that provides for new tax dollars to be used for potentially recruiting and training therapists to provide treatments for our children, while ignoring the fact that the reason for the acute shortage of therapists in Oklahoma is due to the inability to establish a reliable revenue source.

Therapists who have to rely on out of pocket payments from parents cannot survive. This has been proven time and time again in other states.

The underlying message that state after state echo with the passage of the autism insurance mandate is: It is the fiscally responsible thing to do for the taxpayers and the morally responsible thing to do for these children.

Because of the tremendous cost that parents provide for their sick children, the autism community has divorce rates of 80%, bankruptcy rates 5 times the norm, and the mental health of the family unit in decline.

These children will become adults soon. The majority of persons with autism are children under the age of 16. Once they become adults and without the medically necessary treatments and clinically proven therapies, their care will be on the shoulders of the taxpayers.

Some estimates are around $3.25 million per individual. There are currently 400+ children in Oklahoma being diagnosed with autism each year.

The cost of Nick’s Law has been supported by two specific cost/benefit studies concluding the potential cost to be less than 0.3% to 1.0%. And another 23 actuarial studies clearly concluding that the cost of other state’s legislation to be consistent with the cost/benefit impact studies of Nick’s Law. And there is no evidence in the other states that the number of uninsured has increased, nor have insurance premiums increased. Several of the states have uninsured numbers greater than Oklahoma.

This is a great test of the legislature to define what are true family value policies and act as true fiscal conservatives. The legislature needs to pass Nick’s Law and stop forcing the parents and these children into the state run and paid for health care system.

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.

Wayne Rohde to speak in Edmond, OK

Edmond Democrats will meet this Thursday, June 11, in Room 110 of the Edmond Community Center, 28 E. Main in Edmond. The meeting will begin at 6:30.

Guest speaker at this month's meeting will be Wayne Rohde of Edmond. His son Nicholas is the inspiration for "Nick's Law," a proposal to mandate medical insurance coverage for children with autism in Oklahoma. The proposal has met with stiff opposition from Republican lawmakers.

The public is invited.

Cost of Autism Mandate Projected in Reports

By Amy Lester, NEWS 9

Posted: May 20, 2009

Click here to link to the video

Nick Rohde, for whom the bill Nick's Law was named, learns new skills during a therapy session. It costs his family $1,000 each week for the therapy.

Supporters of Nick's Law argue the report requested by the House of Representatives is inaccurate and misleading to lawmakers.

Nick's father and autism advocate, Wayne Rohde, says he'll continue to fight for an autism mandate in Oklahoma.

The battle continues at the Capitol, but supporters of Nick's Law say if the bill doesn't pass this session, they'll keep trying.
OKLAHOMA CITY -- The debate surrounding insurance coverage for autism continues each legislative season, spurred on by reports projecting vastly different increases in health insurance premiums.

A bill called Nick's Law would force insurance companies to cover autism treatments and therapies. Opponents of the bill claim health insurance premiums will skyrocket, but supporters don't agree.

The Rohde family dishes out $1,000 a week, a high price to pay. That's the only option since their health insurance does not cover autism treatments or therapy for Nick, whom the bill is named after.

"Like other families, we spend a lot of money out-of-pocket, our pocket, and it gets difficult," Nick's father Wayne Rohde said.

Nick's father Wayne Rohde and Senator Jay Paul Gumm (D-District 6) have fought for the bill for two legislative sessions, unsuccessfully.

"Ultimately, the payoff is huge," Senator Gumm said. "There's a human payoff, in that these children have a chance to have a full and happy life as an adult."

At the center of the resistance against Nick's Law is how much it may raise insurance premiums.

Supporters point to a study which finds it could increase rates from .5 percent, or less than $2 each month, up to 1.5 percent.

Other states have experienced rate increases, which could mirror the potential increases Oklahoma would experience if Nick's Law is passed.

Opposing Reports for Oklahoma:

Reports % of Projected Increase

Opponent Report (Conducted by Thomas Cummins) up to 19.8%

Supporter Report (Conducted by State Employees Insurance Company up to 1%


Experienced Rate Increases in Other States with Autism Mandate:

State Rate of Increase Experienced

Arizona .55%

Pennsylvania $1 per member, per month

Louisiana $.74-$.93 per member, per month


The Council for Affordable Health Insurance projects autism mandates increase health insurance permiums by 1 percent.

Having the information from other states presented to them, Nick Law's supporters question the integrity of the study which reported Oklahoma would experience an 8 to 20 percent increase.

Speaker of the House Chris Benge stands behind the report, releasing the following statement:

"This report, unfortunately, confirms that adding this autism insurance mandate does in fact increase the cost of insurance and could lead to more Oklahoma families being forced to drop coverage."

Speaker Pro Tempore Kris Steele also supports the findings, but Nick's Law supporters want to know why their report calculates a much higher increase in premium costs.

"Each state is unique and the population of people that live in each state is unique and in Oklahoma, again we have the fourth highest number of uninsured and that contributes to what this would cost to the people who do have insurance," Representative Steele said.

Sen. Jay Paul Gumm, the author of Nick's Law, couldn't disagree more.

"It's a very, very small cost," Senator Gumm said. "Less than a cup of coffee a month for most premium payers."

Thomas Cummins, the actuary who conducted the study for the House of Representatives, believes his calculations are accurate.

Wayne Rohde, Nick's father, filed a complaint against him with the Actuarial Board for Counseling and Discipline. The board dismissed the complaint, claiming Cummins did not violate the Code of Professional Conduct.

Ten states have laws similar to Nick's Law.

Radio Interview with KOSU about Nick's Law

Click here to listen to radio interview on KOSU. Sen Jay Paul Gumm, Wayne Rohde, and Rep Kris Steele discuss Nick's Law.

Interview was conducted Wednesday, May 20th

Medical reformers vow fight for change in Oklahoma insurance industry

BY JULIE BISBEE
Published: April 14, 2009
http://tinyurl.com/dg52n2

A group pushing for health care reform criticized current legislation it says benefits insurers and vowed to keep fighting for change in Oklahoma’s insurance industry.

"This is essentially an unregulated industry in Oklahoma,” said Sen. Kenneth Corn, D-Poteau, who was among advocates for health care reform at a news conference Monday. "When people make payments for care, they should be able to get it.”

Corn said Senate rules requiring a financial statement for bills dealing with the insurance industry have hindered efforts to seek meaningful reform. Some ranking Republicans have publicly said they oppose mandates on insurers because they could make it harder for companies to keep insuring people. GOP leaders say they want the companies to be able to insure more people, not fewer.

Next week, Oklahomans for Healthcare Reform plans to rally at the state Capitol. Members of the group include Wayne Rohde, who has pushed for insurance coverage for autism. Rhode’s son is autistic. The group also includes Nancy Thomason, founder of the Oklahoma Brain Tumor Foundation, who has pushed for insurance coverage for clinical trials. Thomason’s son died of brain cancer.

"Many of our bills haven’t seen the light of day,” said Jeff Raymond, OK Watchdog executive director and a member Oklahomans for Healthcare Reform. "We want to keep attention on it. We’re not going away, and we want people to share their stories.”