Parents turn to states for autism help

Wednesday, April 30, 2008
Parents turn to states for autism help
By Daniel C. Vock, Stateline.org Staff Writer
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Image courtesy of
the Autism Society of America
Especially visible during April, which is Autism Awareness Month, the autism awareness ribbon is made up of puzzle pieces to symbolize the different disorders that fall under the broad classification of autism and the puzzling nature of the disorder.

Jeff Sell, a Texas trial lawyer with four children, recently became a lobbyist for the Maryland-based Autism Society of America, a job that has him crisscrossing the country to persuade state lawmakers to make life easier for people with the little-understood developmental disability.

He shut down his law firm, which had pursued legal cases linking autism with vaccines. But rather than move to Maryland, Sell is staying in Texas so his twin 13-year-old sons can continue to receive state-financed treatment for their autism. If he moves, Sell said, his sons would be on a years-long waiting list for therapy that costs as much as $60,000 a year.

“I live in Texas basically because it’s economically feasible for me to survive in Texas,” Sell said.

One of the toughest problems facing autism patients, their families and policymakers is paying for treatment. Families are increasingly relying on states to help them cope with the financial, medical and educational needs.

Governors and lawmakers have tried to ease those costs with two different approaches: by requiring private insurers to pick up the tab for more services or by creating or expanding public health programs, such as Medicaid, to cover autism treatment.

At the start of the year, 11 states already had laws requiring private health insurers to cover autism-related services, and Arizona joined the group when Gov. Janet Napolitano (D) signed her state's new law in March. Twelve other states have considered or are still debating similar proposals this year, according to a tally by StateScape, a bill-tracking service.

On the public funding side, at least five states — Colorado, Indiana, Maryland, South Carolina and Wisconsin — have set up Medicaid programs specifically for kids with autism. Several other states provide services to autism patients through Medicaid efforts directed at people with developmental disabilities.

Autism spectrum disorders, the umbrella term for several related brain disorders that affect people’s ability to communicate and relate to others, are becoming increasingly common. One federal count estimates the disorders could affect as many as one in 150 American 8-year-olds.

The challenge for those dealing with the affliction is there is no consensus among scientists and doctors on what causes autism, although genetics appears to play a role. Many people have suspected vaccines are at fault, but scientific studies haven’t found a connection.

AUTISM

What is autism?

Autism is a group of disorders that affect language and learning skills, stunt social interactions and can result in repetitive behaviors. Autism spectrum disorders share these similar features but different specific symptoms:

* Classic autistic disorder: Causes impaired social and linguistic development and a limited set of interests.
* Asperger syndrome: Causes sustained impairment in social skills and the presence of repetitive behaviors. Unlike classic autism, language skills are not often severely affected.
* Rett's syndrome: Causes a loss of previously developed skills and is often characterized by repetitive hand wringing motions and declining interest in social interactions.
* Childhood disintegrative disorder: Causes a loss of previously developed social, linguistic and motor skills after after the age of 2.
* Pervasive development disorder not otherwise specified: Causes impaired social skills and difficulties with verbal and nonverbal communication. This classification is generally used for autistic cases that do not follow all the symptoms of other forms of the disease and includes occurences in older individuals.

Source: The Autism Society of America, The National Institutes of Health and The Centers for Disease Control and Prevention
The distinctions among the several types of autism spectrum disorders are hazy, and there’s no one way to treat the disorders. But the medical community does agree that early detection is extremely important for improving a patient’s condition and that effective treatment can be time-consuming and expensive.

Health insurers often cover autism treatments, but they may not pay for the full range of therapies or they may impose limits on coverage.

Advocates for autistic patients say pushing private insurers for coverage is at the top of their state-level lobbying priorities, and one insurance industry expert said it’s “by far one of the most popular” ideas for new health insurance regulations.

Both the private and public funding approaches have serious limitations.

“It becomes increasingly difficult to start drawing lines as to what care should be the responsibility of a health insurer and what care should be the responsibility of parents and what care should be the responsibility of school systems,” said J.P. Wieske, the director for state affairs at the Council for Affordable Health Insurance, an insurance industry group.

The insurance carriers oppose new rules on health insurance, which, they point out, don’t apply to a big chunk of the insurance market.
States have only limited power to regulate medical coverage, because they oversee only insurance sold to small companies and individuals. Health insurance for large companies is regulated by the federal government.

For those seeking public assistance, several states that run specially tailored Medicaid programs have long waiting lists of families seeking services. That’s especially troubling for patients with autism spectrum disorders, experts say, because critical early treatment is delayed.

Because there’s not enough money to pay for all the potential patients, the reach of publicly funded programs is limited. Wisconsin, for example, currently serves 1,801 children with in-home care. Another 384 kids are on the waiting list.

Stephanie Marquis, a spokeswoman for the Department of Health and Family Services, which runs the program, said Wisconsin’s program is especially generous because it allows kids to get services regardless of their families’ income. Children must be signed up by the age of 8 to get intense services, but then they can continue to receive ongoing treatment until they reach 21.

For two years, Wisconsin Gov. Jim Doyle (D) has pushed unsuccessfully to require health insurance companies to pay for autism treatment.

“Private insurance companies are key to helping ensure that parents get the care they need for their children — it’s not something the state can do alone,” Marquis said in an e-mail message.

Doyle’s plan passed the state’s Democratic-controlled Senate but ran into trouble in the Republican-controlled Assembly, which had a vastly different idea of how to serve autism patients. The disagreement prevented any autism bill from passing.

One of the lawmakers leading the GOP efforts was Rep. Scott Newcomer, who has a 13-year-old daughter with autism. Newcomer and Assembly Republicans said the state should dedicate roughly $6 million more to the Medicaid autism program to eliminate the waiting list.

“The most important aspect of my bill was to take care of all those kids on the waiting list. That’s what we had to do now because nobody had the perfect solution for the long term,” Newcomer said.

While insurance and public health programs are the chief concerns for autism advocates now, several other issues are emerging:


* Sell, the Autism Society lobbyist, predicted the “next hotbed” would be in education. Federal law requires schools and parents to agree to yearly plans for special education students, but Texas, for example, specifies about a dozen additional topics that must be addressed for students with autism.
* Good guidelines haven’t been drafted to oversee licensing and training of autism therapists. As states and insurers start paying for more services, they may demand new licensing rules or, at least, accepted standards, said Dan Schwartzer, executive vice president of Wisconsin Association of Health Underwriters.
* State services for autism are scattered across agencies, which is the motivation behind a new Alabama effort to coordinate efforts by universities, state agencies and private providers.
* Several states, including Indiana, are trying to ensure that people with autism can get help from local doctors, therapists and teachers. That means training those providers or recruiting them in every corner of the state.

Contact Daniel C. Vock at dvock@stateline.org.

Funding Autism Therapy May Slight Other Children

By CATHERINE DOLINSKI

The Tampa Tribune

Published: April 23, 2008

TALLAHASSEE - Who deserves help the most: low-income children, or wealthier ones who need costly treatment for autism?

That's the kind of Sophie's choice that lawmakers may face when it comes time to vote on expanding health care coverage for children with developmental disorders.

House Speaker Marco Rubio has made a priority of the late-arrived House bill, which would expand KidCare, the state's health plan for low-income children, to cover expensive treatments of developmental disabilities such as autism, cerebral palsy and spina bifida. The bill would also allow more families with incomes too high to qualify for KidCare to buy into the program.

In many cases, early intervention with intense therapies can transform the lives of developmentally disabled children, improving their physical and mental capabilities. But the therapies are expensive - prohibitively so for many families.

The House proposal to provide coverage for those treatments carries a price tag of more than $23 million for the state. So far, though, the only funding that House lawmakers have identified for the initiative is the $36 million they had earmarked to create 38,000 new subsidized KidCare slots for children living under 200 percent of the federal poverty line.

To read more, please click here

Florida House Panel OK Insurance Plan

House panel OKs autism-aid plan

Breanne Gilpatrick
TALLAHASSEE, Apr 23, 2008 (The Miami Herald - McClatchy-Tribune Information Services via COMTEX) --

A major healthcare plan to help children with autism and other developmental disabilities cleared a key state House council Tuesday, bringing Florida a step closer to providing universal insurance for kids.

For the first time, private insurers as well as Florida's KidCare health program would be required to provide services to children with disabilities, under the plan unanimously approved by the House Healthcare Council. Advocates praised House Speaker Marco Rubio for pushing the proposal, providing a rare sense of relief in a legislative session when programs for the poor, sick and disabled are being slashed as part of $5 billion in budget cuts.

Among the cuts: upward of $180 million in programs for the developmentally disabled. That irony aside, advocates and insurance lobbyists also noted that lawmakers are pushing ahead with a separate affordable health-insurance plan that reduces government mandates rather than requiring more of them.

If the proposal passes, Florida would be one of 12 states to require insurance companies to cover treatment for children with autism. But key questions need to be answered, such as how many children will be served, what will happen to KidCare and whether the proposal will make health premiums more expensive.

A big roadblock: time. The 60-day legislative session is scheduled to end May 2. And some insurance companies, as well as some senators, are privately balking at the late-in-the-game proposal.

"I know it's late in session -- two weeks left. I know it's a broad thing, a big proposal, but I think it's worth our time," said Rubio, who began pushing the House measure after a friend's child was diagnosed with autism.

More and more children are being diagnosed with autism, experts say, but no one is sure why. Right now, one of every 150 8-year-olds has autism. Virtually everyone agrees that early intervention and therapy can make a big difference.

Under the plan, a child would be able to receive $36,000 a year in services -- for a lifetime maximum of $108,000 -- and allow more parents to enter the program by paying the full premium.

In the past, concerns about rising insurance premiums have killed the idea. But Tuesday, representatives from the Florida Insurance Council and Blue Cross Blue Shield of Florida told sponsors they support the plan.

Senate Democratic Leader Steve Geller of Cooper City is pushing a similar proposal, though it only includes a private-insurance mandate for autism and no other disability.

Geller said some people are concerned that the House's broad proposal would cost too much and worries that covering developmental disabilities in KidCare could raise the cost of premiums and break the bank. Next year's proposed budget includes an extra $36.4 million for KidCare enrollment, enough for 38,000 additional slots.

"I am concerned that this year adding a big fiscal hit to the state could be problematic," Geller said. "I like what they're doing. I'm just worried about the funding for it."

On the other hand, some parents say the plan should do more. The proposal's $108,000 limit in lifetime coverage is not enough for parents spending thousands each year, said Carmen Zaldivar, a Miramar mother who has a 13-year-old son with autism.

Hilda Mitrani, of North Miami Beach, said autism therapy made a huge difference for her 13-year-old son, David. When he was diagnosed on his second birthday, he wasn't making eye contact, wouldn't speak and wouldn't respond to his name.

His parents scrimped to pay his $40,000 annual therapy bill. Today, he attends a public school in Broward, where his father lives, and last year he learned Hebrew and celebrated his bar mitzvah.

"Some parents are able to spend a great deal of money to help their children," Mitrani said. "But every child deserves a chance."

Miami Herald staff writer Marc Caputo contributed to this report.

Michigan rally pushes for autism insurance coverage

Lansing rally pushes for autism insurance coverage

by The Associated Press

Tuesday April 22, 2008, 2:10 PM

LANSING, Mich. (AP) -- Supporters of legislation to get better insurance coverage for autism are calling for action at the state Capitol.

Parents and supporters of children with autism rallied at the Capitol on Tuesday.

They want the Legislature to pass bills that would require insurers to cover some autism therapies, screenings and diagnosis.

Most of the bills in the package have not passed either the House or the Senate. A few related bills have passed the House.

The bills have drawn some opposition from those who say more mandated insurance coverage would raise the cost of health care plans for Michigan businesses and residents.

NBC5 - Chicago Moms struggles with autistic children in public

Chicago Mom struggles with children in public

Watch view click here.

Sen Jay Paul Gumm's Press Release April 18

Oklahoma State Senate
OFFICE OF SENATOR JAY PAUL GUMM
Atoka, Bryan, Coal, Johnston & Marshall Counties

For Immediate Release: April 18, 2008

Sen. Jay Paul Gumm

Gumm Says News Release Does Not Provide “The Rest of the Story” on Autism Coverage

A news release about the cost of requiring insurance to provide an autism benefit fails to tell “the rest of the story,” according to the sponsor of “Nick’s Law.”

Senator Jay Paul Gumm, a Democrat from Durant, wrote “Nick’s Law.” The bill would require health insurance policies to cover diagnosis and treatment of autism, a bio-neurological disorder striking one out of ever 150 children.

Senator Patrick Anderson, R-Enid, released a statement Thursday in which he said the cost of an autism benefit to the state employees’ insurance program would result in additional $6 million in claims to be paid out annually. He also said that an autism benefit would cost the private sector even more.

Gumm said the news release fails to examine the “real dollar cost and the human cost” of autism. “Saying a benefit requirement will cost a system ‘X’ amount of dollars does not put the amount into perspective,” he said. “I hope just throwing out a dollar amount is not designed to create fear of ‘Nick’s Law’ and erode the growing support for the measure.”

Anderson has voted for “Nick’s Law,” and Gumm expressed “deep gratitude” to his colleague. Gumm also acknowledged the dollar amount Anderson mentioned in his news release is exactly correct.

“What Senator Anderson failed to share in his news release is that $6 million is only one percent of the money collected from state employees in the form of premiums,” Gumm said. “Let’s put ‘one percent’ into perspective: at worst, that would be an increase of one penny for every dollar paid in premiums.”

Gumm said a one percent claim cost is consistent across the nation, even in the private sector. Texas, however, enacted an autism benefit requirement in 2007. When asked by Oklahoma’s legislative staff, the Texas Department of Insurance said there has been no premium increase attributed to that state’s autism benefit.

Another factor in the real cost of autism, Gumm said, is what will happen to autistic children when they become adults. “Early diagnosis and treatment stands the best chance of giving these kids an opportunity to become everything God intended for them to become,” he said.

“If we deny them coverage and treatment, they are at risk of being unable to care for themselves when they grow up, and the bill will fall to us taxpayers.”

According to a study by Senate staff, a conservative estimate of the amount of money currently spent by taxpayers to provide services to autistic children and adults is almost $50 million annually.

“As the number of autistic children grows, so will the number of autistic adults in the future,” Gumm said. “We will have to take care of them and when we do, that $50 million will look like a drop in the bucket. Not only will it cost us money, it will cost us souls as these adults will remain forever locked behind the bars of autism.”

A more tragic illustration of the human cost was a recent brutal attack on an autistic adult in northwest Oklahoma. Two men have been charged with viciously torturing an autistic co-worker and recording the crime on camera in an attempt to make a reality DVD they could sell.

“This case sadly shows the greatest fear facing every parent of an autistic child,” Gumm said. “If we fail these children today, we will create a generation of perfect victims – individuals who are unable to bear witness to whatever horror is perpetrated on them. Surely we can do better.”

Despite roadblocks in the House of Representatives, Gumm successfully amended a House bill in the Senate to include the autism benefit. That measure is destined for a Senate/House conference committee, where the proposal will be discussed.

“This fight is about valuing some of the most vulnerable among us,” Gumm said. “In some ways, it is about our state’s soul. Autistic children and their families deserve our help, and I will continue to use every legislative means at my disposal to advance their cause.”

For more information contact:
Senator Gumm's Office: (405) 521-5586

Senate resurrects insurance mandates

Associated Press - April 15, 2008 2:05 PM ET

OKLAHOMA CITY (AP) - The Oklahoma Senate has resurrected insurance mandate legislation that was killed in the Oklahoma House.

Senate Democrats have expressed frustration over their lack of success in getting insurance mandate bills heard in the Republican-controlled House. On Tuesday, they successfully attached mandate language to another bill and sent it back to the House for a vote.
One mandate, called the Patient's Bill of Rights, would require insurers to pay for health care procedures that are deemed medically necessary by a physician. Another called Nick's Law would require insurers to cover the diagnosis and treatment of autism. Both proposals previously died in the House.

Democratic Sen. Jim Wilson of Tahlequah says House Republicans should give the ideas a fair hearing. Wilson says far too many Oklahomans go without quality health care.

Nick's Law is still moving forward

By Amy Lester, NEWS 9 Click Here to watch video

Nick's Law may have died in committee, but the bill's author is not giving up hope. Sen. Jay Paul Gumm has a new strategy to get his bill helping autistic families signed into law.

Sen. Paul, D-District 6, turned the killed bill into an amendment which he'll attach to different bill and try to pass.

"This is a debate that needs to happen," said Gumm. "A discussion that we need to have and these families deserve to be heard."

If the new strategy doesn't work, at least one Oklahoman family plans to leave the state.
The Hall family drained their saving and cashed out their IRAs to pay for their son's autism therapy. Their son, Dougie, is improving thanks to the tens of thousands of dollars they have invested.

"He's responding beautifully, he's beginning to talk. He's beginning to come out of the dark world. We're so thrilled," said Caroline Hall, Dougie's mother. "On the other hand, we're not so thrilled about going bankrupt."

Dougie's autism therapy is not covered by health care, and the family said they can no longer deplete their financial resources like they have.

"We know there are other states where Dougie will receive his therapies and insurance will pay for them," said Hall. "We are people of education, we will simply move."

Eighteen states have passed laws like Nick's Law.

Opponents to Nick's Law worried health care mandates could cause the cost of insurance to increase.

Democrat Leaders in state House draw anger

By John Greiner
Capitol Bureau, April 14, 2008
The Oklahoman

Democratic legislators accused Republicans on Monday of siding with special interests in killing bills such as health care insurance coverage for autism. "Right now we are frustrated but not quitting,” said co-Senate floor leader Charlie Laster, D-Shawnee.

Democrats, who included senators and some House members, criticized Rep. Ron Peterson, R-Broken Arrow, for not letting people be heard on some of these insurance proposals including one on autism.

Sen. Jay Paul Gumm said families whose children have autism had come to the Capitol to speak but were denied by a committee chairman.

To read more, please click here.

Struggling to cope with costs of autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parents fight for Autism legislation to Pass - News 9

Parents fight for autism legislation to pass

Posted: April 9, 2008 06:20 PM

Updated: April 9, 2008 08:54 PM

Parents of autistic children wore pens with their loved one's pictures on them to support their efforts to get the legislation passed.

Many parents carried pictures of their autistic children in an effort for their voices to be heard regarding Nick's Law.

By Kirsten McIntyre, NEWS 9

Several Oklahoma families are in the autism fight. They're trying to get legislation passed that would force insurance companies to cover treatment for autistic children.

This battle is creating an emotional firestorm at the State Capitol.

As with most fights at the State Capitol, it all comes down to the mighty dollar. And in this case, neither side is giving up.

"We have disgraced this House and the way the rules of this House are set up to operate," Rep. Mike Brown (D) District 4 said.

"I think it was a terrible day, a sad day for the government here at the State Capitol," Rep. Wallace Collins (D) District 45 said.

Representative Ron Peterson is chairman of the committee assigned to hear Nick's Law, which would require insurance companies to pay for autism treatment.

Wednesday, dozens of parents showed up for a second time hoping Peterson would allow the bill to be heard.

The measure was not heard--leaving parents crying, 'partisan politics.'

"It appears to me they're very behold ant to insurance lobby," Wayne Rohde, Nick's father, said.

Senator Jay Paul Gumm wrote Nick's Law. The Senate has passed it, but unless it can get through the House, the bill dies.

"This was the worst perversion of the Legislature process I've ever seen," Sen. Jay Paul Gumm (D) District 6 said. "For someone to run a train through a committee, to prevent discussion of an issue, it's absolutely unconscionable."

"If we ran autism today, the members that are supporting it aren't supporting it based on data, they're basing it upon emotion and that may be very legitimate," Rep. Ron Peterson (R) District 80 said. "But, as a policy maker we're trying to again address our insurance population and making sure that doesn't grow."

Representative Ron Peterson said he doesn't want the cost of insurance to go up and that's why he's not supporting any mandates right now.

But, supporters of Nick's Law said 18 other states have passed similar legislation and there are no evidence suggesting insurances rates will go up.

The fight is far from over. Supporters of Nick's law said they're working on another way to get the bill before the House for a vote. It's already passed the Senate.

Letter to the Speaker of the House

April 9, 2008

The Honorable Oklahoma Speaker of the House

Representative Chris Benge

Oklahoma State Capitol

2300 North Lincoln Boulevard

Oklahoma City, OK 73105

Dear Mr. Speaker,

I am the father of Nicholas Rohde, a 10 year old autistic boy from Edmond, Ok. You might know him as the boy commonly referred by the legislation as Nick’s Law. As a registered Republican, I am ashamed of the actions of the Chairman and the coordinated effort of the House Leadership today to suppress public debate, input, and necessary comment on Nick’s Law.

What happened today was a great travesty and injustice in the House of Representatives. It gives me no pleasure to ask you, the House Leadership, and Chairman Ron Peterson for a formal apology regarding the way in which parents and family members were treated in the House Economic Development and Financial Services Committee Hearing this week.

I am also extremely displeased with your actions to cancel a scheduled meeting with a group of parents on Thursday. We were not given the opportunity to reschedule and were not provided a reason for the cancellation. It is very suspicious the cancellation came at the same time you called for a caucus meeting.

The Chairman announced that the committee would hear comment and allowed public debate for every bill that was considered today in the committee except for one, SB 1059 presented by Rep Daniel Sullivan. It was obvious that a coordinated effort was in place to not allow any public comment on the original bill nor allowing committee members to question the House author of the bill. It was very apparent me sir, that the members of my party were not happy with what was about to happen. Most were looking down or not engaging the parents and other public. I demand that you stop the type of action that was displayed by the chair. It is not healthy for our state government and it gave the public a very bad display of how our elected officials conduct the peoples business.

As several committee members stated after the hearing, “It was a very sad day at the Capitol.” “We disgraced the House today,” was another quote.

The Chairman violated his own policy of allowing public comment. Several local TV stations have recorded the actions of the chair and the vice chair. Public debate or member questions on the original bill, were not allowed except for a motion to do pass the legislation. Many members and public guests left the committee room after the proceedings truly disgusted.

I would like to remind you sir of what happened last week with the Cherokee Chief who was denied the opportunity to speak in a separate committee. One of the freedoms that all citizens cherish is the ability to speak to our elected officials. When the general public’s ability to speak to our legislators is denied because of pure political gain, then those legislators have broken the trust that we have placed in them to speak for us.

Chairman Peterson continued to disgrace his office by leaving the committee hearing not wanting to address the many parents on his actions. As most of us followed him to his office, he clearly did not want to talk to the parents. Rather than address the parents and answer questions, he locked the door to his office to prevent his constituents from talking with him. Closing the door to discuss matters with individuals can be and will always be respected. But when a legislator locks the doors to his office, he has clearly stepped over the line. The media have reported on this fact and the story has now been released on the AP.

Mr. Speaker, for the last several months, we have directed our ever growing number of parents and family members to respect the office and the legislative process of committees. We have been polite and courteous to all members, recognizing them as our elected officials. We have complied with this process for every step of Nick’s Law. However, when a legislator or the House Leadership clearly does not respect the citizens and voters of this state, then we have the situation that you find yourself in today.

For the last two years, I have personally met with many of the legislators and provided information on autism, the costs associated with this epidemic, and what will happen to the state of Oklahoma if we continue on our current path. I have traveled to their local districts this past summer and fall, or met with them at the capitol. Some of the legislators would not accept the data, facts, and studies that show the related costs associated with insurance coverage of autism. But most of them have embraced this epidemic and wanted to become more educated. Most of the legislators were startled on the financial devastation of the family, and the upcoming financial nightmare when the state has to start paying for the care of these children who will soon be eligible as adults for state welfare.

Chairman Peterson is quoted not less than 12 times in the past 2 weeks stating that he is concerned about the costs associated with Nick’s Law. He is convinced that this legislation will increase the number of the uninsured. He states that he does not want the number of uninsured to go up. Mr. Speaker, I have sent him the necessary information several times over the course of the last 8 months. Today, he stated that he wants to study this issue. He refused to allow a public hearing to discuss this measure. He refuses to accept a meeting to discuss the data, yet in a matter of a couple minutes, the staff can produce an unsubstantiated figure of $ 6 million dollars that the state will have to pay for the cost of covering state employees.

Mr. Speaker, I want to inform you that there are now 18 states that have some form of insurance coverage for autism. Arizona just passed this legislation last month. Indiana was the first in the nation in 2001. The Insurance Commission established a study group to monitor the costs of mandates in 2002. They have reported as of last month, there has been no increase in health care insurance premiums related to autism insurance, nor any increases in the number of uninsured. Yet, Chairman Peterson conveniently forgets this information in his public statements.

I am willing to have a personal meeting with you and the chairman to discuss this in greater detail. I look forward to having a meeting with you in the next couple of days and receiving a formal apology regarding the actions of the House Leadership and Chairman Peterson.

Sincerely,

Wayne Rohde,

House Democrats walk out - Tulsa World

House Democrats walk out of chamber over treatment
By World Capitol Bureau
4/10/2008 11:45 AMLast Modified: 4/10/2008 1:17 PM

From Wayne Greene's Blog: "We've reached the comic opera stage of the legislative session."
OKLAHOMA CITY - House Democrats walked out of the chamber Thursday morning, angry about their treatment in committee meetings where they have not been allowed to ask questions.

The protest follows Wednesday's refusal by Rep. Ron Peterson, R-Broken Arrow, to allow Democratic members to question why Peterson's committee would not allow parents to speak in a public meeting on an amendment to extend insurance coverage to children with autism.A week ago, Cherokee Chief Chad Smith also was not allowed to speak in a committee meeting where an "English-only" bill was being discussed.

Rep. Chuck Hoskin, head of the House Democratic caucus, said it was bad enough that members of the public were not allowed to speak, but elected representatives also are being denied the right to ask questions in committee and on the floor.Thursday morning, Rep. James Covey, D-Custer City, asked to be recognized on the House floor because he wanted to speak with House Speaker Chris Benge, R-Tulsa, about how committee meetings are being conducted. But he was not recognized."That was the straw that broke the camel's back," Rep. Eric Proctor, D-Tulsa.House Minority Leader Danny Morgan, D-Prague, huddled with Benge and others in the speaker's office. Morgan said Benge agreed to review committee rules and will have an answer on Monday.

Democrats stage walkout - Oklahoman

Democrats stage brief walkout in protest, propose changes

Related Information

Capitol coverage

By Michael McNutt
Capitol Bureau

House Democrats staged a brief walkout today from chamber to protest how Republican-led committees have been treating Oklahomans who have tried to speak before them the past couple weeks.

The walkout lasted about two minutes. Democrats, however, later in the morning left the chamber again for a caucus meeting. They submitted several proposals to House Speaker Chris Benge, R-Tulsa. One suggestion was to require committee chairmen to be consistent in allowing members of the public and all committee members an opportunity to speak.

Democratic leader Danny Morgan said Benge said he would review the suggestions and make a decision Monday whether to submit them to the full House for a vote to amend House rules.

After Democrats returned from their caucus meeting, business was conducted with no further interruptions. The House adjourned for the week before noon. Morgan said House Democrats are angry over the refusal by Rep. Ron Peterson, R-Broken Arrow, to let supporters of a measure that would require insurance companies to cover costs associated with autism speak before his committee.

More than 30 supporters showed up the past two weeks to speak to Peterson's committee, but Peterson through procedural moves killed the measure and denied supporters to speak.

Last week Chad Smith, principal chief of the Cherokee Nation, was denied permission to speak before a House committee that took up a bill that would make English the official language of the state. The chairman of that committee, Rep. Guy Liebmann, R-Oklahoma City, restricted comments to House members. The measure passed out of committee and is awaiting action on the House floor.

Morgan, D-Prague, said House Democrats, who are outnumbered 57-44, also are upset over how some amendments are attached to bills or how some bills are gutted and replaced with language dealing with another issue. Amendments and committee substitutes to bills are supposed to have the same subject as the bill. Committee chairmen make the decisions on whether amendments and committee substitutes are appropriate, Morgan said. Their decisions cannot be challenged on the House floor, Morgan said.

Edmond father pushing for autism help

By Michael McNutt

Capitol Bureau

An Edmond father who has spent the past two years trying to get health insurance for autistic children is leading another push today to get the proposal heard before a House committee.

"I knew the biggest hurdle we would always have would be Rep. Ron Peterson and his committee,” said Wayne Rohde, whose 10-year-old son, Nick, has autism. "That's the history of what he's done — he is the person that stops mandates.”

Rohde has appealed to parents to appear at this morning's meeting of the House Economic Development and Financial Services Committee.

An effort will be made to get language of the proposal, called "Nick's Law,” inserted as an amendment to Senate Bill 1059.

Peterson, the committee chairman, a week ago killed an amendment that would mandate insurance coverage for autism disorders.

Thursday is the deadline for Senate bills to pass out of House committees. Today is the last day Peterson's committee meets to take up Senate bills.

Peterson, R-Broken Arrow, said Monday he was still consulting with the speaker of the House over what to do. He did not return telephone calls Tuesday.

If the measure isn't heard in Peterson's committee, it's possible Nick's Law language could be attached as an amendment to an existing bill.

"The Republicans are clearly trying to kill the autism language where it doesn't get a fair hearing,” said Rep. Mike Shelton, D-Oklahoma City, a committee member who tried last week to get Nick's Law heard by Peterson.

Peterson has authored House Bill 3111, which would place restrictions on new health insurance mandates. It is intended to take a closer look at the cost of insurance mandates to reduce the price, which could offset price increases for policyholders.

Peterson said he's concerned that mandates increase the cost of insurance and make insurance less affordable. His measure did not get heard by a Senate committee. The Senate's deadline to hear House bills was last week.

Negotiations are continuing to keep his proposal alive.

Oklahoman Editorial April 8, 2008

Wed April 9, 2008

At a premium: Mandate debate needs compromise

The Oklahoman Editorial

In a relatively quiet legislative session dominated by a standstill budget, the issue of health insurance mandates has risen to a level perhaps not seen since the mental health parity controversy during the Keating administration.Supporters of mandates related to autism and clinical trials for new treatment modalities are passionate for
Many are relatives of victims of a disease or condition that would be addressed in a mandate. They are thus highly subjective participants in the debate.

On the other side is the principled opposition, one that we share, to mandates in general because of the effect mandates have on health insurance premiums. Supporters typically say a mandate will add only marginally to insurance costs, thereby negating the argument that mandates inordinately hurt the poorest and uninsured by making policies unaffordable.

Let's say that each mandate adds just 0.5 percent to the cost of insurance. With 40 mandates, that's a 20 percent increase. The point is, mandates must be considered as a whole.

Mandate supporters have found a demon in state Rep. Ron Peterson, R-Broken Arrow. A committee whose agenda he controls is cool to the latest mandate proposals. Peterson has ties to the insurance industry. Is he thus a highly subjective party to the debate?

Perhaps, but isn't that also true of lawyer legislators who routinely vote on tort reform bills and other legislation affecting their profession?

Compromise is possible in this debate, but it will take yielding from both sides. Peterson has a common-sense bill to subject proposed mandates to scrutiny before they become law. He believes, and we agree, that the financial and social impact of a proposed mandate should be studied before the mandate takes effect. Treatments that would be covered under the mandate would be vetted according to their efficacy.

Maybe if mandate supporters would work to enact Peterson's proposal, he would be more amenable to their ideas.

Senator Jay Paul Gumm's Statement

The State of Oklahoma

OFFICE OF SENATOR JAY PAUL GUMM

Atoka, Bryan, Coal, Johnston & Marshall Counties

April 8, 2008

FOR IMMEDIATE RELEASE

Contact: Senator Jay Paul Gumm

State Capitol: (405) 521-5586

Durant: (580) 924-2221

Mobile: (580) 920-6990

Senator Gumm’s “Senate Minute” Column for April 9-15, 2008

OKLAHOMA CITY - Hello again, everyobody! With half the session gone, the seeming inability for a number of issues to cross the partisan divide is troubling.

My bill requiring health insurance coverage for autism diagnosis and treatment and another called “Steffanie’s Law” – requiring insurance companies to continue covering patients participating in clinical trials – ran into partisan roadblocks in the House of Representatives.

In other states, both measures were enacted with bipartisan support. In the Oklahoma Senate – which is divided evenly between Democrats and Republicans – both bills enjoyed bipartisan support. Only when they arrive in the Republican-controlled House of Representatives do they fall victim to partisan politics.

Certainly, there are differences between the parties. Political campaigns are where those differences are and should be discussed. When campaign season is over, and it comes time to govern, the responsibility should shift away from winning elections and toward finding those areas of agreement on issues that affect us all.

Autism strikes Republicans and Democrats alike. Cancer strikes Democrats and Republicans alike. Partisanship should be checked at the door when we are discussing issues relating to health. Working to make Oklahoma a healthier state is in everyone’s best interest – Democrat, Republican and Independent.

On both the autism and clinical trial insurance bills, “no” is the only answer we have thus far received from the House committee chairman who is single handedly holding them up. He has never said to the media, “I am opposed to these bills, but here is another idea how to help these families.”

None of us who are fighting for these families is so inflexible that we would not look at another answer. “No,” however, is simply unacceptable – for whatever the reason. These bills both make sense; both will improve the quality of life for thousands of Oklahomans – and in some cases they might even save lives.

If we cannot help families facing the most difficult health issues of their lives, then I truly do not know why we are here. The phrase “family values” often gets tossed around in political discussions, but I do not know how anyone can talk about “family values” if they do not support issues that value families.

When it comes to standing up for the people of Oklahoma, I will always employ every legislative means at my disposal. While that tenacity has been criticized on the editorial pages of one of the major metropolitan newspapers, I see it as a fundamental part of being a lawmaker.

For me, the battle comes down to this: If we cannot enact policies to help families facing health challenges like autism or cancer, then we will have a difficult time enacting policies that help us all. This battle is about Oklahoma’s soul and Oklahoma’s families, and no partisan political interest should trump either.

Thanks again for reading the “Senate Minute,” have a great week and may God bless you all.

Tulsa World - It's Time

It's time:

Insurance should provide coverage for autism

Apr 07, 2008 (Tulsa World - McClatchy-Tribune Information Services via COMTEX)

Seven years ago Indiana passed a law requiring insurance companies to provide coverage for autism. Since then 17 states have passed similar legislation.
Last week, Arizona joined the list. Louisiana, Mississippi and Connecticut have bills under consideration. So does Oklahoma. Several weeks ago, "Nick's Law," named for 10-year-old Nick Rohde, an autistic child from Edmond, passed in the Senate. Now supporters are trying to get the bill out of a House committee. This is not an inconsequential matter.

The bio-neurological disorder occurs in one in 150 births and affects up to 1.5 million Americans. The cost of life-long care can be reduced by two-thirds with early diagnosis and intervention. In a decade the annual national care costs will be up to $200 billion.

The bill did not make it on the agenda of the House Economic Development Committee meeting Thursday. But parents of children affected by autism who had showed up to support "Nick's Law" did not leave and instead hung around to answer questions from lawmakers during breaks in the meeting and afterward.

Fortunately Nick's Law is appended to another bill set to come up

in the Economic Development Committee. Let's hope it can be heard and that committee members will have the courage to vote for it.

For the families of children with autism, the bio-neurological disorder is as real as heart disease, more prevalent than childhood cancer and often difficult to treat. Obtaining insurance coverage for psychological and neurological disorders has never been an easy sell in Oklahoma.

It took years for lawmakers to recognize that mental health treatment deserved coverage parity with other illnesses.

Our insurance industry is not heavily mandated. According to the Tulsa Autism Foundation the insurance industry's own policy group reports that autism insurance coverage would increase costs by less than 1 percent.

Mandates affecting the state insurance industry must be scrutinized carefully with an eye toward fairness. Why should autism be excluded? Lawmakers should seriously consider authorizing coverage for this devastating disorder, the fastest-growing developmental disability in the nation

The Oklahoman's editorial on Nick's Law

In the Saturday, April 5, 2008 edition of The Daily Oklahoman, a brief editorial appeared criticizing Senator Jay Paul Gumm for his continued efforts to require autism diagnosis and treatment be covered by health insurance policies in Oklahoma. The editorial has drawn significant response in the "Comments" section of the newspaper's website at www.newsok.com (the direct link to the editorial is http://newsok.com/article/3225682/1207359531). The editorial and comments follow:

---

The stuff of mandates

There's more than one way to skin a cat, we were told before such a saying became uncomfortable in the age of animal rights sensitivity, and there's more than one way to get an autism coverage insurance mandate into state law. Actually, three ways — so far. State Sen. Jay Paul Gumm, D-Durant, is passionate about the autism mandate. When Gumm's bill requiring the mandate didn't make it out of a Senate committee, the bill's language was transferred to no fewer than three bills. One dealt with an insurance premium tax credit and another with a firefighter pension and retirement system. The third actually dealt directly with insurance coverage. As of Friday, it appeared none of the three was going anywhere. We've long been critics of coverage mandates, but if this is a good thing, let's do it in a bill about the mandate rather than stuffing it inside the skin of other bills.

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Comments:

· I read with interest your editorial, 'The stuff of mandates,' in the Saturday Oklahoman. I am one subscriber who strongly differs with your views. You implied that Senator Gumm's actions were inappropriate. Attaching amendments to other bills is not unprecedented, and an amendment can't be attached to a bill without a majority vote in the senate. You state that Senator Gumm "is passionate about the autism mandate." GOD BLESS HIM!! He has listened to the hundreds, if not thousands, of Oklahoma families who desperately need the help this bill would provide and who just want to be heard. Senator Ron Peterson has thus far maneuvered and successfully blocked every attempt to try to give this bill a fair hearing. Is it too much to ask that it just be heard? Senator Gumm, while following the rules, is just simply using every method at his disposal to try to get a fair hearing for this bill. As a Republican I can understand your philosophy on mandates. However, I think it is wrong to assume that they are all without merit. Sometimes they are absolutely necessary. It is appalling to me that the most diagnosed illness in children today (one in every 150) is not covered by insurance in Oklahoma. I am the grandmother of a child with autism, so, of course I share Senator Gumm's passion for wanting to help these children. (I recently sent a letter to "Your Views" regarding this subject.) I doubt this letter will change any minds or hearts, but perhaps if you editorial writers could step into the shoes of a parent coping with an autistic child for even one day, you might be convinced to help rather than criticize the way we are trying to "skin this cat!!!" Donna Greve
Donna, Oklahoma City - Apr 5, 2008 9:44 PM

· Robyne stated "Oklahoma rates higher than the national average of people covered by Medicaid. It appears our legislators prefer the “government” pick up the tab for our healthcare. By defending the anti-insurance mandate mantra, our legislature is driving Oklahoma to state run health care." This is so true. Many of the parents of children with autism are paying for private insurance, but receive no coverage for our children. The cost of intervening and treating these children now is miniscule compared to the cost of caring for them as adults ($3.2 million over their lifetime). Why would you be against something that would help these children? It can't be cost. The Insurance Industry’s own policy group CAHI.org reports that autism insurance coverage will cost less than 1%. It must be because you don't understand. You don't understand the heartache of these parents who see their children locked in a world of their own. Parents who once saw their child playing, talking and laughing, then saw that child disappear before their eyes. Parents who are helpless because they have exhausted their finances and still have so far to go. Parents who have seen and heard of other children who have recovered, or at least gotten better. Yes, it must be because you don't understand. Because to understand and still oppose this legislation, which would help so many children and families, would just be cruel. If you don't support it because you don't believe, at least support it for self-preservation. Because with each passing day, more children are being identified and added to our state medicaid rolls. Your tax dollars at work!
vicki, Guthrie - Apr 5, 2008 7:53 PM

· In your editorial 'the stuff of mandates', you indicate that 'we have long been critics of mandates', and since this paper refuses to print letters to the editor on this topic, allow me to provide your readers with some information. Oklahoma has not passed an insurance mandate since 1999 yet our premiums continue to rise while reducing coverage. The insurance industry is lobbying to convince our legislators that mandates will increase the cost of insurance, resulting in more people becoming uninsured. In actuality, when Nick’s Law is passed, Oklahoma will see droves of families becoming insured so that their children with autism will finally be able to receive the necessary treatments to become independent adults. Without treatment, these children will be forced through the public school system, unable to read, write, or communicate their most basic needs. A 2006 Harvard study concluded the lifetime cost to care for a child left untreated at $3.2 million. A child having had no treatments, once they turn 18, will be added to the state welfare roles at an estimated cost to each Oklahoma taxpayer of $700-$800/year. The Council for Affordable Health Insurance (CAHI) lists Oklahoma as one of the least mandated states in the nation. At the same time we lead nearly all states in the number of uninsured. So what’s really driving insurance costs in Oklahoma? It can’t be mandates. Maybe it is the personal wellness practices or the excess use of alcohol, tobacco, and rise in obesity rates. Oklahoma rates higher than the national average of people covered by Medicaid. It appears our legislators prefer the “government” pick up the tab for our healthcare. By defending the anti-insurance mandate mantra, our legislature is driving Oklahoma to state run health care. Since 80% of these children are under the age of 15, per the NAA, without effective treatment, the first big wave of these children will be applying for state and federal aid in less than 4 years. This will coincide with the first big wave of retiring baby boomers. As one state senator said, it is the perfect storm. Autism, the quiet epidemic, will be the loudest sonic boom ever heard! Robyne Rohde
Robyne, Edmond - Apr 5, 2008 2:24 PM

· · Where are your questions regarding the committee chair's efforts to kill a bill that would help thousands of Oklahoma's most vulnerable children while introducing a bill protecting insurance companies from mandates? (HB 3111) Why are you not questioning Rep Peterson's position against all insurance mandates? What does Rep Peterson suggest we do to insure these children appropriate therapies and treatments while already having insurance in place? Yes, Nick's Law was attached to three bills. All which took the majority vote of the full senate and is within the rules to do so. I want to thank Sen. Gumm for standing up for these children. Also Rep. Brown, Collins, and Shelton for taking on this cause. Wayne and Robyne Rohde for leading us on this issue. Shame on Rep Peterson for not even allowing this bill to be heard. Shame on the other committee members who sat silent while he did so. Shame on you for remaining quiet on this issue. This article disrespects all who are fighting with everything they have for this bill. Where are the articles about the struggles of Oklahoma families living with Autism? About the children who deserve this coverage? Instead you question our methods and brush over Rep Peterson's total refusal to allow this bill a fair and appropriate hearing. I would ask that you look into this issue in more depth so all sides are heard. Laurie Edmond Oklahoma
Laurie, Edmond - Apr 5, 2008 1:14 PM

· There are thousands of Oklahoma families counting on Senator Gumm to represent us in our endeavor to secure insurance coverage for our children. Our attempts to be heard in committee have resulted in mere pats on the back and comments of, "Sorry, this is just the way policy-making works..most bills just never get heard". As noted by the Rohde's submission, tactics to pass legislation are employed by ALL of the legislators....thank goodness we have Senator Gumm's expertise on our side. He is helping us be noted and heard- something you might consider doing yourself. Anne Marie Liles
Anne Marie, Oklahoma City - Apr 5, 2008 12:55 PM

· Autism and related disorders represent fastest growing health threat to children in the U.S. Senator Gumm, the Rohdes, and ideed all the parents of children affected by autism are to be commended for their efforts in helping make proven therapies and treatments more easily accessible to those affected by autism. Your comments make it seem that these efforts were less than fully legitimate or at least somewhat underhanded. Rather, the methods used to further this legislation was completely appropriate within the rules governing our legislative process. Instead of criticizing, why not advocate for the legislature to do what is right and good for the children and families of Oklahoma!
Paul, Edmond - Apr 5, 2008 11:59 AM

· I want to correct your statement on "stuff of mandates". First, the 3 bills that Nick's Law was amended to all passed the Senate with overwhelming bipartisan support. According to Senate rules, all bills must deal with Insurance to allow an amendment of another insurance matter. You did not mention that fact. Nor will you publish letters to the editor supporting Nick's Law or other health care mandates. Also, please note and keep for your future reference, due to the evenly split Senate, amending legislation is a very common and acceptable practice. Yet you feel it to be a cheap end around on this case. We are working within the rules of the legislature to advance medically necessary legislation for thousands of children who can not speak for themselves and for the thousands of parents and families of Oklahoma that you will not their viewpoint to be heard!
Wayne Rohde, Edmond - Apr 5, 2008 8:45 AM

Autism Yesterday Premier - Press Release

FOR IMMEDIATE RELEASE

Biomedical Intervention Group of OKC/Edmond

Contact Information - Bigofokc@yahoo.com

405-488-7609, 405-306-9184, 405-204-1713

IS AUTISM TREATABLE AND EVEN REVERSIBLE?

Join the Biomedical Intervention Group of Oklahoma City/Edmond and Aaron’s Bridge (www.aaronsbridge.org) for the world wide premiere of the documentary, “Autism Yesterday”. Oklahoma City will premiere this documentary along with over 100 other venues across the world simultaneously on Thursday, April 17^th, 2008 at 7:00 p.m. The Oklahoma premiere will be shown at the Oklahoma City Metropolitan Library Downtown Location, 300 Park Avenue, Oklahoma City, 73102 (on the corner of Hudson and Park Avenue). The event will be in 46^th Star Auditorium located on the 4^th floor of the library. Admission is free and garage parking is available South of library at the cost of $3.00 for 2 hour parking.

The documentary was created by Generation Rescue (www.generationrescue.org) and follows the lives of five families on their journey to heal their children from a disorder that had been previously deemed a life long condition. In the film you will see the progress and recovery of the children using biomedical treatment as only families living through it can tell. A parent/doctor panel discussion will follow the film. The featured doctor will be Neurodevelopmental Pediatrician, Dr. D.L. Gheen of Edmond. The parent panel will consist of experienced parents who are successfully treating their children with biomedical treatments.

David Kirby, best selling author of ‘Evidence of Harm” reviews the film and writes, “In each story, we see clear before-and-after evidence of a child’s heartbreaking descent into the silent, baffling world of autism, and then their steady, sometimes miraculous progress back towards health, happiness, communication and, yes, recovery. The film, in elegant detail, shows us exactly how far these kids have come. A trailer may be viewed at http://www.autismyesterday.com/trailer.html.

The primary goal of this event is to present hope. Many families are not given hope and are told that “autism is not treatable”. Biomedical Intervention Group of OKC/Edmond and Aaron’s Bridge were founded by local parents that have witnessed their children become healthier with consistent biomedical treatment supervised by well-trained physicians. Their belief is based on new research that autism is a medical condition and that over time “autistic” symptoms can be reduced and sometimes alleviated with consistent biomedical treatment. Currently, Oklahoma has a shortage of physicians specializing in the biomedical treatment of this neurobiological disorder. The hope is that additional Oklahoma medical professionals will become specialized to treat more Oklahoma children with autism spectrum disorders. Currently, more children are diagnosed with autism than all types of childhood cancer, diabetes, and AIDS combined (Centers for Disease Control, 2007).

Rubicon School 2008 Annual Conference on Autism & PDD

The Rubicon School and Learning Center 2008 Annual Conference on Autism and Pervasive Developmental Disabilities
	The University of Central Oklahoma Nigh University Center Edmond, Oklahoma April 21, 2008 8:30 a.m. – 4:30 p.m. Click Here for more information

A Letter to the Citizens of Oklahoma

Over the course of the last several months, I have received a lot of emails from people of Oklahoma and across the nation about Nick’s Law. Most of them have been good and complimentary of the efforts of Nick’s Law.

I have also received many from ordinary people who have hate, ugliness, and selfishness in their heart and soul. They simply don’t get it. They say how dare you call your special interest bill after a child, that’s just a cheap trick for sympathy. You have no right to increase my insurance. You are going to bankrupt my business. You are a socialist, a special interest wacko. You are the reason for your child’s condition. Take care of your child, we do not want to. Those are some of the comments. Today was no exception.

Instead of answering to those persons specifically, I want to honor and say thank you to the parents, grandparents of children and their efforts at the capitol, in the schools, and in your homes for advocating for their children. I want to share an article that I submitted to a couple of national publications back in February. This clearly shares the ideals, the concerns, the hopes, and prayers that so many of you have for your children. The article highlights the struggles that many families deal with on a daily basis, whether your child is diagnosed with autism or other disorder. Hopefully, our legislature is listening and will help us.

Thanks

Wayne Rohde

The Insurance Industry’s Folly of Autism Coverage.

For the last decade many parents and families have received the same message from their insurance companies when submitting for insurance coverage of autism related expenses and services. DENIED.

Why is that a business that is in business to insure for medical expenses, not provide coverage for a medical condition? Their excuse is that most treatments and therapies are “experimental or educational”. Yet, we have nearly 30 years worth of data, studies, and research (hardly experimental) that ABA behavioral therapy provides the necessary treatment to help reverse and recover many autistic children. We have living proof of what bio-medical interventions can do, just look at the pictures of many children before and after.

For many, we followed one government mandate (vaccinations), and we watched our children disappear right in front of us. Now as we are asking our government for a mandate to recover our children, we are being told DENIED.

The insurance lobby uses talking points like mandates will increase the cost of insurance and prevent people to obtain health care insurance. I would like to ask the insurance lobby one question about Nick’s Law, an autism insurance equity; PROVE IT! Show me the data or costs that would be associated with Nick’s Law and how it would prevent others from purchasing insurance. Remember, you have had 6 years to do this in Indiana and there is no data to show any accountable increase. Texas and South Carolina legislatures passed similar bills in 2007. Both had similar comments, “This is the most fiscally responsible thing to do for the taxpayers, and we are morally obligated to our future generations.”

The idea of trying to keep insurance policies affordable is a noble one. However, how we get there is a tale of two cities. The insurance lobby wants to stop or roll back existing mandates. The result in their eyes is that the costs will be lowered. Do you think if they roll back an existing covered disorder or condition, would they immediately lower our insurance? It’s an insult to the intelligence of the parents. What we know is that the policy holders will then have to depend on the state taxpayers for these services and treatments. Shifting health care costs from private insurance to taxpayers is what will happen.

The insurance lobby wants to provide a basic health care plan so more people will purchase policies. There are only two ways to lower the costs of insurance; lower the benefits or lower the reimbursements to the medical providers. We have all heard of the stories of families purchasing low cost insurance policies only to find out later, their child who was stricken with leukemia, the medical costs will not be covered.

Let’s explore an example of what the insurance companies and several legislators would consider a major accomplishment. A family of four, living in Oklahoma making $ 35,000.00 per year, struggles to make ends meet with rent, utilities, and food expenses. They can not afford to purchase health care insurance at an estimated cost of $ 600.00 per month. Legislators and the insurance lobby want us to think that if they can lower the cost of that insurance to $ 300.00 per month, then in their eyes, they have accomplished a very lofty goal. Not bad except for one over looked detail. The family of four still can not afford to purchase the insurance policy at $ 300.00. They will still be dependent on state run and paid for health care.

We hear a lot of rhetoric about the number of uninsured and mandates will lead to more uninsured. Today in Oklahoma, that number is around 708,000 people. Yet in our state, there has been no health care mandates passed since 1999. The uninsured number keeps increasing, but it is not from mandates. Our legislature and our Insurance Department should study the real reasons for this instead of talking about hypothetical’s that do not exist or spend time trying to determine what they want in an insurance policy.

In the Oklahoma Legislature, we hear a lot of talk about family values, defending the sanctity of marriage, and protecting the rights of children. To the legislators, you have no right to talk about family values when you support policies that destroy the family unit. You have no right to talk about marriage and preventing divorce when you unite with forces that are actually destroying marriage. You talk about protecting the rights of children, but yet you do not defend the right for the child to receive the medically necessary treatment to pursue and achieve the opportunity for a normal life. To many of the legislators at the capitol that will not provide us this remedy, then I ask you this: What is your solution for the devastation as a result of this epidemic. Please do not just tell us I am sorry, but I can not help you. We as voters and citizens demand to here your solution.

We all know that in today's world, no insurance means no care, and insurance companies should not be allowed to red line autistic children out of treatment. Nick’s Law aims to stop that.

Nick’s Law will provide greater access for all to health care. Many medical practitioners in the state have quit accepting Medicaid patients. There is such an acute shortage of providers. Yet in other states that have passed autism insurance coverage, there is a resurgence of practitioners that will provide the necessary services and will start to accept Medicaid once again.

State services are max’ed out. The waiting lists for state services are many years long. These children can not wait. Parents are literally racing against the clock to help recover their children that were taken away from them at such an early age.

To the citizens of Oklahoma and across this great nation who do not understand what the financial devastation of autism does to the family and ultimately to the children, you argue that our cause will only increase insurance costs, I have a question for you. Right now we are talking about insurance coverage for autism. Who will step up and defend you when in the future, you or one of your family members is diagnosed with disease or disability that is no longer covered? What happens when breast cancer is no longer covered? What happens when your son/daughter is diagnosed with leukemia only to find out that your insurance will only cover the first $50,000 of the $500,000 total bill?

In a recent story, HealthNet, a California insurance company lost an arbitrated decision and appeal for $ 9 million dollars to a lady who had her insurance policy canceled because she was diagnosed with breast cancer. In a prepared statement, the insurance company stated that they were trying to hold down costs in order to provide an affordable insurance. Now, HealthNet’s appeal has been answered. DENIED!

The insurance companies are leading us down a path of ignoring the people who can not speak for themselves, ignoring who provide care for the people who cannot, ignoring whose parents and families have exerted all of their energy and hope without any recourse or chance to recover, and whose lives that have been taken away.

Every so often, our legislature has the opportunity to do something, which is right and just to its very core. Now is the time and place to do so.

Wayne Rohde

Edmond, Oklahoma