Nick

Nick

Tuesday, December 29, 2009

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.”

Sunday, November 15, 2009

Wash DC officials propose autism insurance requirements

The Associated Press
2009-11-15

WASHINGTON -
Two D.C. Council members are planning to introduce legislation this week that would require insurance companies to improve coverage for children with autism.

Tommy Wells and Muriel Bowser plan to announce details of the legislation Monday and introduce their bill Tuesday.

If the bill passes, the District of Columbia would join a growing number of states that have passed autism insurance requirements.

Many insurers don't cover treatment for autism. Behavior therapy for an autistic child can cost up to $50,000 a year.

Copyright 2009 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

http://www.examiner.com/a-232186~DC_officials_propose_autism_insurance_requirements.html

Monday, November 2, 2009

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

Saturday, October 24, 2009

Nick's Law - Health insurance coverage battle continues in Legislature


Health insurance coverage battle continues in Legislature
by Jay Paul Gumm

DURANT — Hello again, everybody! Some battles at the State Capitol are over quickly; others continue, waiting on political leadership to catch up with public opinion.

The struggle to provide health insurance coverage to children with autism is one of those battles that will continue. Finding a way to help these children and their families is one of the issues to which I have devoted much effort.

For me, this struggle is a moral issue. My continued work on this is borne from my commitment to strengthen families and help ensure that every Oklahoma child has a chance to reach their God-given potential.

We are still waiting on the political leadership to catch up with public opinion. On the second night of last year’s legislative session, leaders in the House of Representatives killed the bill known as “Nick’s Law.” After that family-unfriendly vote, the leader of that committee proudly stood before the television cameras and said “Nick’s Law” was dead for two years.

Their hope was that the bill, and those families who support it, would simply go away. There have been few political miscalculations as off-base as was that one. Those of us committed to families continued the struggle throughout the session. We won a few battles in the Senate, but House leaders continued to turn their back on these families and their precious children.

Now, almost five months after the legislative session ended, those of us carrying this banner got another boost. Despite the reluctance of some legislators to acknowledge the importance of this issue, the nonpartisan Oklahoma Institute for Child Advocacy (OICA) has once again put autism insurance on its list of legislative priorities.

This group, which always has been a strong voice for Oklahoma’s children, made the decision during its fall legislative forum. At that two-day event, child advocates gathered from across the state to determine what OICA’s focus should be in 2010.

Republican and Democratic legislators addressed different panels on a host of issues. The child advocates were from every corner of the state and members of both political parties. This was as nonpartisan as you could get.

When the only question was “What is best for the children?” the answer was clear. Finding a way to help families pay for the expensive therapies necessary to give children with autism a chance at a full and happy life is – and should be – a top legislative priority for our state, regardless of partisan political considerations.

This is an issue both political parties have embraced in other states; in some states, the charge was led by Republicans. Oklahoma children deserve that same bipartisan support, and I will continue working to that end.

As always, if you have comments, questions or concerns about state government, send me a message through my website at www.gumm.us. You can also follow me on Facebook at www.facebook.com/jpgumm and on Twitter at twitter.com/jpgumm.

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

Monday, September 14, 2009

Health Care Reform Abandons Developmentally Disabled Children

Sunday, September 13, 2009
By Terri Lynn Tersak

I’m a parent of an autistic child and Autism Advocate. We are often asked when we first noticed a problem with our son Xander (X). X got his first MMR along with his Varicella (chickenpox) vaccines on 09-20-2004. Two weeks later he was showing pronounced symptoms of Autism Spectrum Disorders.

It did take a while to get autism as the official diagnosis. But we started asking questions right away. The first roadblock was that the autism upsurge we are seeing began a year or two before X was born. We were told how badly the system was slammed, so they wouldn’t even begin the evaluation until he was three years old.

During our 18 month wait for assessment we started hearing word about the MMR and stopped his vaccinations. From that point, to this day, folks (like teachers of autistic children, social workers, etc.) have been telling us not to give autistic children the seasonal flu shots and to skip the second MMR too.

As much as I disagree with most of what the public is told about autism, I do understand what’s going on. Currently the autism prevalence figure widely promoted is, 1 in 150 children are autistic. There was an upsurge in the mid 1990’s and the vaccines or rather a mercury based preservative (Thiomersal) in the vacancies was blamed. But, the studies said it wasn’t to blame. Yet without any legal mandate the producers of vaccines stopped using Thiomersal in all vaccines except in the seasonal flu shots, which require it for some reason.

Now we have an even larger — try massive — upsurge in autism. Currently the CDC and NIH have the next/latest autism prevalence figure undergoing “peer reviews.” I’m all for thorough peer review and do admit I tend to ignore studies and figures that aren’t exhaustively vetted before release. However, many believe this review set is being dragged out for more than just political reasons.

The reform effort is all about “the numbers.” So I’ll cover some with you. The 1 in 150 prevalence figure is somewhat rounded up to an easy to say number. The accurate currently published autism prevalence figure is 6 in 1000. Thus 1 in 150 is actually too high. The new prevalence figure for autism is expected to be more than 12 in 1000, but is already being called 1 in 100. So the media is prepping to say something like “… Autism prevalence is up from 1 in 150 to 1 in 100, a 33% jump …” when the truth is, it will be more than a 100% increase (doubled) in 2 years!

This new prevalence number reflects the addition of the children that started school in the 2007-2008 through 2009-2010 school years, thus those born between 2003 and 2004. This massive upsurge comes from the children born those two years. Currently more children are annually diagnosed with Autism than are for AIDS, diabetes, and cancer combined. Once the new prevalence figure is released autistic children will represent at least 1.2% of all school age children.

See: “Introduction to Future of Autism Keynote Panel” for the first unofficial release of the new prevalence figure by the Autism Society of America.

Here are some of the raw numbers, by state.

State index

State Level Autism Insurance Reform Efforts

Although my personal focus has been on support for the autistic, all developmentally disabled (DD) are currently excluded from health care equity/parity under the current Federal Statutes. This leaves the states and private insurers able to deny coverage under both private and public health insurance plans.

The best reference for what is classified as DD is found in the World Health Organization’s, “International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Version for 2007″ (IDC), in Chapter V, Mental and behavioural disorders, Disorders of psychological development, Blocks F80-F89

All those listed in these blocks of the IDC that do not have an associated medical condition(s) or mental health classification(s) are currently at risk of total omission from the current health care reform bills. Inclusion of the full range of Developmental Disability classifications, along with the existing classifications of Mental Health and Substance Abuse, need to be addressed in advance of any health care reform legislative actions.

The shortest route to these ends would be an amendment to include DD in the Mental Health Parity and Addition Equity Act of 2008. However, the two authors of this Act are gone; Paul Wellstone was killed in an airplane crash and Pete Domenici retired due to health reasons. Finding sponsors who will enact legislation that will cost insurance companies a lot of money, arguably more than any one health inclusion has to date, has been a tough sell to say the least.

Early estimates say this latest upsurge in autism alone is going to cost between $300 Billion to upwards of $600 Billion – just for autism treatment – over the next ten years; above and beyond what we are being told Health Care reform will cost. This estimate does not include the cost of research to determine what caused this unexpected upsurge. Based on current costs of services, you can figure about $100K per autistic child, per year (for ball-parking numbers). How long they need treatment ranges from grades Pre-K through 6, up to lifetime support. The level of services needed range from $60K to $200K per child, per year depending on the degree of their affliction. So you can see that developing actuaries is going to be a daunting task.

Insiders say the real push for Health Care reform to happen now is being driven by various insurance and Pharmco entities so the laws, as written – that currently exclude parity/equity for autism – are passed and signed into law before the new prevalence figure goes “media public.”

Among the myriad of lies we are being told is that the current health care reform bills all include parity/equity for DD children, including autism. Not true. Review of the bills by legal scholars, coupled with a strong understanding of the complexities of our federal statutory construct tells the whole truth.

For example; H.R. 3200: America’s Affordable Health Choices Act of 2009. TITLE I–PROTECTIONS AND STANDARDS FOR QUALIFIED HEALTH BENEFITS PLANS, Subtitle B–Standards Guaranteeing Access to Affordable Coverage, Sec. 114. Nondiscrimination in benefits; parity in mental health and substance abuse disorder benefits.

(a) Nondiscrimination in Benefits- A qualified health benefits plan shall comply with standards established by the Commissioner to prohibit discrimination in health benefits or benefit structures for qualifying health benefits plans, building from sections 702 of Employee Retirement Income Security Act of 1974, 2702 of the Public Health Service Act, and section 9802 of the Internal Revenue Code of 1986.

(b) Parity in Mental Health and Substance Abuse Disorder Benefits- To the extent such provisions are not superceded by or inconsistent with subtitle C, the provisions of section 2705 (other than subsections (a)(1), (a)(2), and (c)) of section 2705 of the Public Health Service Act shall apply to a qualified health benefits plan, regardless of whether it is offered in the individual or group market, in the same manner as such provisions apply to health insurance coverage offered in the large group market.

Note how H.R. 3200 references existing statutes for inclusion of Mental Health and Substance Abuse related disorders. It does not create the language that defines what it is or is included. See the Mental Health Parity and Addition Equity Act of 2008 for some of the definitions and the statutes that act references and the statutes they reference to see what exactly is included for Mental Health and Substance Abuse related disorders, not H.R. 3200 or any of the other “Health Care Reform” bills.

Also note the words, “autism,” “autistic,” “ASD,” “DD,” or “developmental” are nowhere in any of the current health care reform bills. Then note there is no federal health insurance parity/equity statutes that cover autism specifically or the more general class of developmentally disabled.

Critical to the autistic and where the greatest level of health care discrimination to them is what are called, “essential services” or “essential benefits”. Again let’s review H.R. 3200, SEC. 122. ESSENTIAL BENEFITS PACKAGE DEFINED. Nothing related to developmental disorders or disabilities, or autism specifically is included. Not a word or reference to existing statutes. Currently, countless parents of children with an autism diagnosis, diligently call private insurance providers and asked for premium quotes for a policy, for their child. Each and every company explained that they will not sell a policy for someone who has an autism diagnosis.

“This is just not right,” says Jeff Sell, The Autism Society of America’s Vice President of Advocacy and Public Policy. “Not only are these families being unfairly refused coverage for treatment of autism, but the companies are also refusing to sell coverage so these young people can see a doctor if they get strep throat, break a bone, develop a stomach ulcer, require intensive behavioral interventions or otherwise simply need access to prescribed medical care. In the future, with meaningful health-care reform, these families will be able to buy health coverage because insurance companies will no longer be able to exclude anyone just because that person has autism, or any other pre-existing condition.”

[Emphasis added]

Only if parity/equity for autism in health insurance that mandates autism be included in public and private insurances “essential coverage packages” exists in some federal statute before the health care reform is passed and that or those statutes are referenced by the health care reform act that is passed into law will the autistic realize, “meaningful health-care reform.”

So why the push to pass “something” now?

The motive is, of course, money. The cost of covering autistic children will either crush insurance companies’ profits or force them to raise premiums at least $100.00, per month, per policy if they have to cover autism to the same degree they cover medical and mental health conditions. That’s exactly why they don’t cover them presently and the insurance lobby has all but declared war on autism coverage. Currently, both private and public insurances can deny coverage to the autistic, including basic medical coverage, which the state of North Carolina attempted to do this year (attempted to drop coverage from Medicaid and CAP programs for autism and other DD patients). The insurance industry doesn’t want this to change and make no bones about that fact. Thus leaving only “the public option” — whatever that really means — to cover the mess no one wants to be completely honest about.

The insurance and Pharmco lobbies in DC are each so big the oil and labor lobbies look like underfunded amateurs in comparison. So if we are going to get “health care reform” — that is really Health Insurance reform in disguise — while Congress can’t get an already pissed-off public to buy into a public option (never mind having to tell the public that the current plan, as the bills are currently written, means autism will have to be covered by the public option) — some major omissions of facts and mutations of truth is going to have to be proffered as truth (and it certainly is) and the current effort will needs to be passed before the new autism prevalence figure and its associated costs become well known.

The plain fact is; we are being told that the “public option” will only cover “a small percentage of people.” True, but this is the most expansive example of constructive fraud (a lie by omission) in history. That small percentage of people are some of the most expensive to treat and are the fastest growing group needing health care insurance that are currently, largely uninsured. If insurance equity/parity for the autistic isn’t legislated, passed, signed into law, and codified before the health care reform becomes law, this small percentage of people will be the single most expensive part of health care reform. Moreover, they will be entirely on the shoulders of the taxpayers who played no role in what has happened to these children or their complete abandonment.

So our bought-and-paid-for-government needs to ram the health care reform down our throats before we find out how badly they are screwing us to protect the biggest of all special interest groups, insurance and Pharmco. But as long as they get this colossal swindle passed before the upsurge numbers go media-public, then technically they didn’t lie to us to get our support. Because there is only the old “official government stamped” prevalence figure for autism, they believe they can say they didn’t know the exact level in the upsurge of autism prevalence when the bill or bills were passed.

Are you getting the picture?

So our battle is on several fronts: Equity in insurance and in legislative actions overall for the autistic — and all DD patients — and demanding an objective investigation into just did this to our children are on the top of the list. The fact is, whatever did this wasn’t by natural or environmental changes. This upsurge was sudden and without warning. The service providers have yet to get staffed to eliminate waiting times for evaluation of two years or longer even after having years to plan.

For the record: Environmental changes don’t happen over night or cause widespread, abrupt disruption to the world’s gene pool – BS on that story. Except in cases of massive detectable exposure levels, naturally occurring or environmental exposures do not cause almost instant changes in a child’s entire developmental processes – BS again.

Somewhere, some group is responsible for a monumental error. One so huge no industry or even group of industries can afford to pay for this mistake. Likely, the responsible parties are powerful and influential enough to keep the truth hidden. It does appear the taxpayers are about to get stuck footing the bill for this colossal screw-up, under the guise of Health Care Reform and like the parents of the autistic – without any warning.

Any plan that does not include everyone is not, “Universal” or “Comprehensive,” these are just words being using to mask the truth. In closing, please recognize that if 1 in 150 or 1 in 100 children were being kidnapped or developed cancer — all of a sudden with no explanation -– a national emergency would be declared.

We have a national emergency and we, as a nation, are failing to respond.

This entry was posted on Sunday, September 13th, 2009 at 6:04 pm and is filed under Economics, Family, Health, OP/ED, Politics, Society, Vox Populi. You can follow any responses to this entry through the RSS 2.0 feed. | 393 views | Trackback | Print this page |

I am a wife, a mother of an autistic son and the retied President & C.E.O. of True Equality Network. I much prefer Mrs. to Ms. -- marriage is a good thing and needs all the advertising it can get. | More from Terri Lynn Tersak

http://mensnewsdaily.com/2009/09/13/health-care-reform-abandons-developmentally-disabled-children/

Friday, September 11, 2009

OK State Republicans can’t have it both ways on healthcare rationing



By Bailey Dabney, Publisher
CLAREMORE DAILY PROGRESS


September 8, 2009 September 08, 2009 12:23 pm

— The national healthcare debate goes on. Support for the plan with a government run public option is sparse and momentum for it’s passing never built.
That may prevent the passage of the largest healthcare overhaul America has ever seen.

The debate, however, rages on, and will likely continue until some type of compromise is met. There appears to be a consensus that changes are warranted. Scope and structure are at the heart of the disagreement.

‘Rationing’ is the most common fear of those who oppose the Congressional plans that have been proffered to date. It’s certainly not the only problematic by-product of a government run system, but it definitely resonates with scores of Americans.

Who could want healthcare rationing? Town Hall style meetings show standing-room-only crowds who oppose rationing.

Other countries with government run health systems are certainly rationing, which has brought many foreigners from countries who offer “free” care to America for appropriate treatment.

They seek better healthcare here and are willing to travel and pay for it.
Republicans and many Democrats across the country are diametrically opposed to the rationing of care.

Here’s the kicker. In Oklahoma: the most conservative state in the union, where Republicans control the House and the Senate, we already are rationing healthcare for the insured as well as the uninsured with Autism.

There’s no other way to describe it. There are medically necessary and clinically proven treatments and therapies that Doctors and Therapists prescribe that insurers refuse to cover. That’s exactly what rationing is.

Both Republican candidates for Governor, Mary Fallin and Randy Brogdon, have issued statements on their websites and in the media denouncing the rationing of healthcare.

Yet Oklahoma’s healthcare rationing has been sanctioned by the Republicans in the State legislature with their refusal to hear or pass Nick’s Law.

Nicks Law is a bill that is specifically designed to stop Oklahoma insurance companies from rationing healthcare to children and adults with autism.

It would require the insurance companies to cover therapies proven effective in the recovery and improvement of autistic children.

Speaker Pro Tempore Kris Steele, Speaker Chris Benge, Sen. Glen Coffee, et al have one leg on the dock and the other in boat.

Their tacit approval of rationing healthcare to children suffering with a debilitating illness in Oklahoma flies directly in the face of the Grand Old Party’s best and most prolific argument against nationalized healthcare.

It is the height of hypocrisy for state Republicans to oppose rationing care when it comes from a Democrat in the White House yet argue for rationing when it comes before them in the Oklahoma House of Representatives or Senate.

I look forward to Senator Brogdon exercising his newfound distaste for healthcare rationing when the next legislation session begins.

While our current healthcare system needs some re-engineering to close some small gaps, the Democrat sponsored bills for a government run health system have far too many flaws to be reasonable solutions to our healthcare woes.

Those who represent us in Oklahoma City, and those who wish to, should square their actions with their beliefs. Stop rationing healthcare in Oklahoma. Make sure the insurance industry fulfills its obligations to their paying customers in Oklahoma.

Perhaps if the states took better care of this problem, our federal government would get back to doing the things the founding fathers envisioned.


Copyright © 1999-2008 cnhi, inc.

Sunday, August 9, 2009

Extra edition: States rolling back non-basic coverage

editor's note. The Oklahoman by publishing another hit piece editorial about Nick's Law, does show that they are concerned about the momentum of our legislation. Please leave comments on the blog and click the link to leave comments on the newsok.com website.

The Oklahoman Editorial
Published: August 9, 2009

to view comments posted on newsok.com website, please click here.

If mandating “extras” in health care coverage doesn't affect premium costs much, as some claim, then why are “extras” cut out when times are tough?

The answer, of course, is that mandates do cause premium inflation and cuts must be made during economic downturns. That's exactly what a number of state governments are doing now.

Stateline.org reports that 14 states actually increased taxpayer-funded coverage for children using federal funds that may or may not continue. If those funds are cut off, the services will be cut as well.

Other states are slashing health care benefits to help balance their budgets. A Stateline roundup notes that New York has eliminated free cancer screenings for the uninsured and underinsured. Hawaii cut $3 million from a program that combats child abuse in at-risk families and California may eliminate poison control programs.

Few would argue that cancer screening, child abuse prevention and poison control are luxuries. But they are extras. When states mandate coverage for, say, autism behavioral treatments, they turn an extra into an entitlement. Problems arise when too many extras join the basics. One of the arguments against the autism mandate in Oklahoma is the cost it would add to insuring state employees, whose coverage is mostly paid by taxpayers.

Turning extras into entitlements is a recipe for a fiscal meltdown. Mandates have their place in society — preventative treatments, for example, may lower costs in the long run — but taxpayers should be wary when a mandate is imposed upon most citizens.

Sunday, July 5, 2009

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

Friday, June 26, 2009

U.S. House Passes Bill to Expand Autism Treatment to Military Families

Sestak Amendment Included in National Defense Authorization Act

Yesterday, the U.S. House of Representatives passed legislation expanding services for autism treatment for military families. The National Defense Authorization Act includes an amendment authored by Congressman Joe Sestak (D-PA) expanding insurance coverage for the children of service personnel under the military’s healthcare program (TRICARE).

“We are thrilled about this bill’s passage, which will expand much-needed quality care to families that have made tremendous sacrifices for our country,” said Lee Grossman, Autism Society President and CEO. “It also sets an example for insurance companies in the private sector, an important step toward getting all families and individuals affected by autism the appropriate, medically necessary care they need.”

The amendment including the autism provisions was introduced in the last session of Congress, and when it failed to pass then, our advocates in the autism and military communities refused to let the issue die. The ultimate passage of this important legislation would not have been possible without their tireless advocacy and the devotion of Congressman Sestak.

The current system providing autism services to military families, the Extended Care Health Option (ECHO), provides only limited coverage. Only five percent of eligible military children receive care because of excessive delays-- as long as two year waiting periods-- and arbitrary coverage denials. The new amendment will work to fix these problems by:

• Mandating coverage of autism spectrum disorders (ASD) under TRICARE, rather than the marginalized ECHO program.
• Requiring that treatment of ASDs be provided if a health care professional determines that it is medically necessary
• Ensuring that beneficiaries under the age of 5 who have developmental delays and are at risk for autism may not be denied access to medically necessary treatment.
• Requiring the Secretary of Defense to ensure that authorized providers of applied behavior analysis or other structured behavior programs are licensed or certified by a state, the Behavior Analyst Certification Board, or other accredited national certification board.
• Requiring the Secretary of Defense to ensure that all employees or subcontractors of authorized providers are also certified and meet minimum qualification standards.
• Quickly enacting the provisions 180 days after passage.

Wednesday, June 24, 2009

Gumm: Texas’ Continued Advancements in Autism Coverage Present Somber Comparison


Gumm: Texas’ Continued Advancements in Autism Coverage Present Somber Comparison

As Texas families this week celebrate the signing of legislation expanding the age of mandatory insurance coverage for children with autism, Sen. Jay Paul Gumm said Oklahoma families struggling to care for autistic children deserve better from their state Legislature.

Texas’ new law expands the age of mandatory insurance coverage for children with autism from the time of diagnosis to their 10th birthday. Gumm noted that Texas’ legislation was approved by a majority Republican Legislature and signed by a Republican governor.

“This shouldn’t be a partisan issue – our focus must be on improving quality of life for children with autism and helping families bear the cost of treatment,” said Gumm, D-Durant. “Now that we’ve seen other states effectively deal with this issue, it’s time for the Oklahoma Legislature to do what’s right for our families. We need to step forward and approve meaningful legislation that positively affects the lives of families struggling to care for autistic children.”

Gumm was the author of “Nick’s Law”, which would have required insurance companies to cover diagnosis and treatment of autism in children. Gumm also authored a proposal to require the Oklahoma Health Insurance High Risk Pool to cover treatment for autism, but both proposals were shelved in the 2009 session.

“Oklahoma and Texas are both conservative states, but we’re moving in opposite directions on this particular issue,” Gumm said. “It suggests that Texas leaders understand the importance of assisting families in need and that an honest examination of the plan’s potential risks has revealed it to be a prudent and morally sound proposal. 'Family values' must be more than a couple of words politicians use at election time; those words must reflect a commitment to policies that truly value families - including those families who have children with autism.”

For more information contact:
Sen. Jay Paul Gumm: 405-521-5586

Tuesday, June 23, 2009

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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Sunday, June 21, 2009

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.

Friday, June 19, 2009

BCBS of Mich concedes class action law suit

Blue Cross Blue Shield of Michigan Forced to Pay for Behavioral Therapy for Autism In Landmark Case

Release issued by Mantese and Rossman, P.C., on June 19, 2009

Detroit, Michigan. The family of an autistic child filed a motion in federal court today to confirm settlement of a class action against Blue Cross Blue Shield of Michigan. The family alleged in the suit that the insurer wrongfully refused to cover behavioral therapy for children with autism spectrum disorder (ASD), on the baseless ground that the care was"experimental. "

Under the terms of the settlement reached at a court-ordered conference on Wednesday, June 17, 2009, Blue Cross [of Michigan] has agreed to reimburse all families who paid for behavioral therapy for their children after May 1, 2003, and who were covered under a Blue Cross Blue Shield of Michigan insurance policy. Blue Cross had earlier filed a motion seeking dismissal of virtually the entire case on legal grounds, but the Honorable Stephen J. Murphy III permitted the case to go forward and scheduled the matter for further proceedings, including a settlement conference before Magistrate Michael Hluchaniuk.

The settlement was reached in the case of Christopher Johns v. Blue Cross Blue Shield of Michigan, 08-cv-12272, filed in Detroit. In the suit, the plaintiff alleged that Blue Cross' pattern and practice of characterizing the scientifically established Applied Behavioral Therapy as "experimental, " and thus as excluded under its insurance policies, was arbitrary, capricious, illegal and contradicted by many years of scientific validation.

Under the settlement, Blue Cross [of Michigan] will pay for behavioral therapy rendered to over 100 children in the last six years. Plaintiff's counsel, Gerard Mantese and John J. Conway, were pleased with the settlement.

Mr. Mantese and Mr. Conway issued a joint statement emphasizing:

"No insurer should ever take this approach to needed care for children. Applied Behavioral Analysis therapy is supported by science and is not 'experimental. ' Delays by insurers in authorizing this treatment, when it is covered by insurance policies, should not be tolerated. Research shows that children with autism spectrum disorder need this therapy early on in life and delaying treatment can irreversibly prevent them from achieving their full potential."
Mr. Mantese emphasized that the settlement includes even families who never submitted a claim to Blue Cross, but who obtained this care for their children and were covered by a Blue Cross policy. Mr. Conway believes that this is the first such settlement addressing Applied Behavioral Analysis (ABA) in the country.

ABA therapy is administered under the supervision of licensed psychologists and other professionals. ABA applies one hundred year old concepts of changing behavior through positive and negative reinforcements. The federal suit in which this settlement was achieved centered upon the ABA treatment provided by prestigious Beaumont Hospital and its HOPE Center, including Dr. Ruth Anan and Dr. Lori Warner.

The case settled shortly after Plaintiff's counsel obtained a court order requiring Blue Cross to produce file documents which validated the effectiveness of ABA therapy for treating children with autism spectrum disorder.

Among the documents in the Blue Cross files obtained by Plaintiff's counsel was a draft of a Blue Cross Blue Shield Medical Policy for 2005, which acknowledged the following:

Applied behavioral analysis (ABA) is currently the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders and is the standard of care recommended by the American Academy of Pediatrics, National Academy of Sciences Committee and the Association for Science in Autism Treatment, among others.
Blue Cross' own documents further acknowledged that:

The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions.
Mr. Mantese stated,

"After we compelled Blue Cross through motion practice to produce all materials supporting its position that this care was allegedly experimental, we received numerous file documents which actually established that ABA therapy works and is highly effective in increasing the functioning of these children."

Mr. Conway emphasized, "We are pleased that we were able to obtain a result which will require Blue Cross to pay for this important care and will alleviate some of the financial strain imposed on over a hundred families by having to pay for this care when it was covered under their insurance policies."

Contact information for the families' attorneys follows:
Gerard Mantese, Esq.
Mantese and Rossman, P.C.
1361 E. Big Beaver Road
Troy, Michigan 48083
248-457-9200 Office
248-515-6419 Cell

John J. Conway, Esq.
John J. Conway, P.C.
645 Griswold St, Ste 3600
Detroit, MI 48226
313-961-6525 Office
313-574-2148 Cell

Saturday, June 13, 2009

Wayne Rohde: A father with a cause

Norman Transcript

By M. Scott Carter

June 13, 2009 01:33 am

— Transcript Staff Writer
OKLAHOMA CITY -- Wayne Rohde didn't want this.

A self-described conservative Republican, Rohde and his wife, Robyne, came to Oklahoma about 10 years ago to be near Robyne's parents.
That was in 1999.

A short time later, Robyne gave birth to fraternal twins, Austin and Nick. Austin was born at 28.5 weeks; Nick was born at 30 weeks. And, like many other parents, Wayne and Robyne were busy with life and raising their boys.

"The boys were born in October, and they came home in December," Wayne said. "And it took them a while to catch up developmentally."
Things rocked along OK until Nick was about 20 months old.
"Then Nick hit a wall," Wayne said.

The pediatrician told them not to worry.
"We noticed that Nick couldn't eat crackers, or play with toys correctly," Wayne said. "We got concerned. The pediatrician said he'd be fine, he was just slow catching up."

The pediatrician was wrong.

Nick's development seemed to stop. And Wayne and his wife began a frantic search to find out what was wrong. Eventually, after more than a year, they would discover that Nick suffered from autism.

"I took over a year to make an appointment to see a therapist," he said. "If that would have been down to a month, chances are we could have recovered."
That diagnosis changed their lives.

"My wife wouldn't even say 'autism,'" Wayne said. "She called it the 'a-word.' And I had no idea what that meant. No one knew. We'd never went through anything like this before."

Because Nick's treatment was delayed, Rohde said, his recovery is much slower. "By delaying the diagnosis and treatment, well, one day is bad, but one year is horrible."

Rohde said it took so long to discover Nick's problem because there were no qualified professionals in Oklahoma. "Screening is one thing, but getting the proper diagnosis can take a long time."

There was little information available, he said.

"We were given two things, a copied piece of paper about autism and a prescription for Ritalin. That's modern medicine, 'There's a pill for that.'"

Then came the medical bills -- huge medical bills.

Bills that Wayne's medical insurance wouldn't pay.

Rhode estimates his family pays more than $5,000 a month to treat Nick.

"We got denial after denial," he said. "And, I guess it was at that point that I got mad as hell."

And it was at that point that Wayne Rohde changed from conservative businessman and father to hard-core political activist.

First he put his fist through a wall.

"The insurance companies were telling us 'no,' the banks were beating on our door. We were gonna loose the roof over our head. The car company was going, 'hey, we're sorry but where's our money?' It was more than I could take."

After his initial expression of rage, Wayne Rohde did something different -- he became an activist.

He and his wife surrounded themselves in research about autism coverage and he began approaching members of the state Legislature about changing state law to compel insurance companies to cover autism treatment.

"I kept asking why the insurance company won't pay," he said. "We're paying them thousands of dollars each month and they're not covering Nick. What's the deal?" Rohde continued his questions, then formed connections with parents across the country who had similar problems.

"I found families in other states," he said. "Loose networks of people."
Slowly, the groups made progress. Several years ago, Indiana was the first state in the country to require autism coverage, then in 2007, a similar bill in Texas became law.

"That gave me the green light," Wayne said.

Just like his son, Wayne hit a brick wall, too.

After convincing his brother to front him the money for plane tickets, Wayne traveled to other states as they conducted legislative hearings on autism coverage. He gathered data and information, then he traveled to 23rd and Lincoln.

"I spent six months visiting with legislative leaders on both sides of the aisle," he said. And while he found some lawmakers who would listen, Rohde said the state's Republican leaders flatly told him no. "The state GOP said 'no.' They said insurance rates would go up. I said that's disingenuous."

Putting his family life -- and his software company -- on hold, Rohde eventually would team with Durant Democratic state Senator J. Paul Gumm to develop Nick's Law, a legislative proposal that would require insurance companies in Oklahoma to cover autism treatment.

"I visited with Senator Gumm. He and his wife had just had a baby and his wife just happened to be researching autism," Wayne said. "The stars lined up and we took off."
Rohde, Gumm and others began their fight to pass Nick's Law. They started in 2007 and didn't expect to get very far.

"I knew that first year we would have to educate people," he said. "And I didn't expect the bill to pass."

The Legislature proved him right.

While Nick's Law generated a great deal of public debate -- and media coverage -- the measure failed to clear the House of Representatives.

But Wayne Rohde refused to give up.

After their initial political battle, Rohde and Gumm tried again. And this time, things got ugly. Instead of a debate about the issue, Rohde said Republican lawmakers turned rude and defensive.

"We did get further than people thought we would," he said. "And we got a lot of people interested."

And, in a strange twist of fate, one GOP critic helped in that effort.
Rohde said when state Rep. Ron Peterson slammed the door in the faces of a group of 20 parents of autistic children, "people got pissed off."

"It was all because of Rep. Peterson," he said. "After he slammed the door on us a lot of people contacted us and said, 'Wait a minute, these people are parents up here.'"

With public pressure growing, Rohde said some GOP members began to fight back.
"They would get really mad when a group of us would go up there and walk the hall. Some lawmakers said they were too busy to talk. We stopped one, who told us to make an appointment with his assistant. We tried that and the assistant said the lawmaker was too busy, could we come back in the summer? But session would have been over."
And while Rohde said some members of the Legislature were concerned and did listen, he said some many legislative leaders were 'just downright rude.'

"Rep. Gus Blackwell got really pissed off when I brought 20 parents into his office and two television stations," he said. "He was furious." Rohde had the same criticism for Edmond state Sen. Clark Jolley.

"Senator Jolley sent out e-mails saying I was unprofessional and not courteous," he said. "Well I say 'bite me, Senator, you're up here to represent your people and you won't even allow them to come into your office and talk to you, so bite me."

Later, Jolley would tell the Edmond Sun that Rohde's effort was "the greatest effort anybody has made to educate the Legislature about autism."

"There's a lot of education that will need to happen," he said. However, Jolley said he was "concerned" about forcing mandates on insurance companies as required by Nick's Law. "When asking for an insurance mandate, it's asking for coverage for something that not everybody needs," Jolley told the newspaper. "And you're asking for everybody else to bear the cost of it, and that's what universal health care is."
Jolley said in providing coverage for autism and other expensive health-care issues that may not be provided for by insurance companies, he would want to look at expanding pools of insurance, providing increased incentives for medical savings accounts and other options prior to having to enact a mandate.

"I would rather see us provide greater medical savings accounts," he said.

Rohde said Jolley was simply speaking for the insurance companies.

"I have come to understand that the Oklahoma Legislature isn't set up for the public good. It isn't set up for public input as other states are. In other states, they actually have committee hearings. But the Oklahoma Legislature isn't set up that way. All the outcomes have been predetermined."

Legislative leaders, he said, prevented Gumm and other supporters of Nick's Law from bringing in data and expert witnesses to testify at committee hearings.

"It's all set up for the lobbyists, because they are the only ones who can afford to be up here every day," he said. "Sure parents might come up here once in a while but they don't have a clue to what's going on. The GOP has dug in their heels on this issue."

During one meeting, Rohde said members of the Oklahoma Conservative Political Action Committee told him to move to a different state if he wanted better coverage.
"I was told to do that be the OCPAC," he said. "But we're not going to. We don't want to move away from our family. We're not going to punish our kids by moving."

Still, while Rhode hasn't gotten Nick's Law passed yet, he has been a driving force in educating the public about autism -- a complex developmental disability that typically appears in children before age 3, according to the Autism Society of America.

"It's a complex neurobiological disorder. It impacts areas of the brain responsible for social interaction and communication skills," Rohde said.

In fact, this weekend, the Defeat Autism Now conference is taking place at Norman. And though Rohde said he won't be able to make all of the two day event, he did plan on sitting in on several sessions.

And, he added, he'll continue his fight.

"I'm not giving up. Right now 13 states have passed an autism mandate. It's only a matter of time. I don't mind the fight. I'll step into the damn arena, because I know I'm on the right side."

M. Scott Carter 366-3545 scarter@normantranscript.com

Copyright © 1999-2008 cnhi, inc.

Wednesday, June 10, 2009

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.

Tuesday, June 9, 2009

Mich Autism Bill passes House Cmte

Michigan Autism Insurance Bill HB 4476 Unanimously Passes House Health Policy Committee-To Go To Floor Of the Michigan House
T
he Detroit Free Press reports that Michigan House Bill 4476 (2009) ( introduced 2/26/2009; Sponsor: Rep. Kathy Angerer + 4 co-sponsors)

Insurance; health care corporations; coverage for certain treatments related to autism was approved by a unanimous 19-0 vote in the Michigan House Health Policy Committee and now heads to the floor of the Democratic-led House. It is reported by The Detroit Free Press that the Senate side of the Michigan legislature may be expected to mount challenges to the bill.

Thursday, June 4, 2009

Free Markets and Nick's Law

The free markets exist and prosper when there is accountability and transparency. There is none in the private insurance market in OK. There has been no insurance mandates passed in OK since 2001, yet our insurance has been increasing each year on an avgerage of 10% or more and not because of insurance mandates.

The insurance industry in OK has one of the lowest medical loss ratios in the nation. That means that they pay out the lowest percentage of premium dollars as claims. Is that free market principals?

The cost of Nick's Law (autism insurance legislation) has been shown to have a potential increase by two different studies of 0.3% to 1.0%. And there are 23 other independent studies that show similar mandates to be less than 1% in other states. Yet our House leadership hides behind a factually inaccurate report that concludes the cost to be as high as 19.8%. There is no supporting documentation or other studies anywhere to support this figure.

Other states are passing autism insurance mandates because of the tremendous cost savings to the taxpayers. Texas this past week expanded their autism insurance mandate. A very red state and very conservative. Their message. "This is a fiscally conservative approach to the taxpayers because it will save the state $4.06 billion over the next few decades".

By denying people who pay for health insurance, the coverage for a medical condition with medically necessary and clinically proven treatments, you are endorsing a movement for a gov't health care system.

The insurance industry made their bed, now it is time to sleep in it.

Parents and supporters of Nick's Law encourage private insurance coverage and want as many people as possible to enroll. Insure Oklahoma offers great subsidized programs for people to purchase health insurance.

I for one, do not want a single payer system from the gov't regarding autism. It has failed in England. We need specialized care, not a template care system. A single payer system might work for the general health, however, I have my doubts, but by continuing to allow an insurance industry to continue their discriminatory practices, we will get to that type of system courtesy of their actions.

There are only two industries in the US that enjoy anti-trust protections from our federal gov't. One is baseball and the other is the insurance industry. Do we really need another AIG?

Sunday, May 31, 2009

Texas passes expansion of Insurance Coverage

F O R I M M E D I A T E R E L E A S E
Texas Legislature Passes Expansion
Of Insurance Coverage for Texas Children with Autism

Effective Date:
May 31, 2009 Contact: Mike Bernoski, Executive Director
512-402-5842 Phone;
media@texasautismadvocacy.org


Austin, Texas – The Texas legislature showed their support today for families by passing a measure to expand the age of mandatory insurance coverage for children with autism from the time of diagnosis to the 10th birthday. HB451 expands on the existing law passed in 2007 which requires coverage for generally recognized autism services, including Applied Behavior Analysis. Parents of children with autism spectrum disorder celebrated today and are urging the Governor to sign this bill into law.

“It is hard to appreciate how much effort on the part of so many goes into passing a bill of this nature,” said Mike Bernoski, Executive Director of Texas Autism Advocacy. “The broad bipartisan support shows that Republicans and Democrats alike understand this is a family issue, and it moves Texas a significant step forward in its response to the growing crisis of autism.” This is Texas Autism Advocacy’s second successful push to secure better insurance coverage for children with autism.

This legislation, authored by representatives Dr. Alma Allen (D-Houston), Eddie Lucio III (D-Brownsville), and Senfronia Thompson (D-Houston), and carried in the Senate by Sen. Eddie Lucio Jr (D-Brownsville), author of the existing law which has been in effect since January 1, 2008, was a welcome relief to parents whose children were excluded by the first law because they were either too old or too young or the child of a teacher.

Taxpayers have something to cheer about as well. By expanding the number of children covered, the bill will triple the existing law’s $1.35 billion in lifetime savings to a projected $4.06 billion over the next 50 years.
“One in 150 children is diagnosed with autism. If we do not take care of our children now, we as Texans will suffer later,” Rep. Allen explained. “This bill will help the hardest working in Texas - those that deal with the challenges of raising a child with autism.”

“Early intervention has proven to be able to turn a child’s life completely around,” commented Senator Eddie Lucio Jr., “Now that we have a better understanding of the associated costs and benefits it is time to take the next step.

The Texas bill remains the only state insurance reform that has no dollar caps on the stipulated coverage which includes diagnostic testing, speech, OT, PT, as well as medical and behavior therapies.

Parents and teachers are eager for Governor Perry to sign the bill into law. This bill does not affect ERISA, Medicaid, or CHIP plans, however efforts are underway to address these plans as well.

To learn more about legislation and other initiatives, please visit www.texasautismadvocacy.org.

Texas Autism Advocacy’s mission: To seek to create systemic change by identifying practical solutions that will positively affect the lives of people affected by Autism Spectrum Disorders.

Saturday, May 30, 2009

What will it take?

Tulsa World OP/Ed

By Staff Reports
Published: 5/30/2009

Click here to see other comments.

Nevada became the 12th state to pass autism insurance mandates. New Mexico, Montana and Utah also passed legislation in 2009. Connecticut and New Jersey aren't far behind. Our legislators say, "Oklahoma is unique from other states regarding the uninsured." Florida, Louisiana, Arizona and Texas all have high uninsured rates. All have passed autism insurance legislation and all are red states.

Our opponents say there's a lack of qualified therapists in Oklahoma. There are many board certified behavior analysts who travel to Oklahoma to supervise and train tutors and develop and oversee treatment programs. States that have passed similar legislation have seen large influxes of medical practitioners once physicians and therapists realize they will be paid for their services. Recently, an autism therapist from Oklahoma City moved to Texas because she couldn't afford to practice in Oklahoma while having to depend on out-of-pocket payments from parents.

Republican legislators say Nick's Law is too costly. Two actuarial studies conclude that Nick's Law, which would mandate autism treatment for children in insurance plans, would have an impact of less than 1 percent. Yet legislators keep using an inflated study showing the cost could rise up to 19.8 percent. There isn't another study in the U.S. that supports that claim. How much longer can our children go without health care? How many more families need to go bankrupt? How many more divorces are necessary? We lose a child a day in Oklahoma to autism. What is it going to take, Oklahoma?

Robyne and Wayne Rohde. Edmond

Tuesday, May 26, 2009

Growing Old With Autism

By KARL TARO GREENFELD
Published: May 23, 2009

IN mid-2007, I set off to meet with geneticists, epidemiologists and doctors who specialize in researching and treating autism. I was seeking a novel therapy for my 42-year-old autistic younger brother Noah. I was also looking to discover how heightened awareness of autism — it is now among the most financially successful and mediagenic diseases ever, with hundreds of millions of dollars a year going to research, and regular press coverage — might have resulted in new and innovative programs for adult autistics like Noah.

Autism was already widely being described as an epidemic, affecting as many as 1 in 150 8-year-olds, according to the Centers for Disease Control and Prevention. We had come a long way since Noah got his diagnosis in the late ’60s, the so-called dark ages of autism, when many pediatricians believed they had never seen a case, and so-called refrigerator mothers were mistakenly blamed for their children’s withdrawn, antisocial condition.

But now, with autism described to me as “the disease of the decade” by Peter Bell, the executive vice president of programs and services for the advocacy group Autism Speaks, I thought perhaps there was hope, even for low-functioning adult autistics like Noah.

Noah has been my family’s focus for decades. As a baby, he had been very slow to turn over, crawl or walk, and each subsequent developmental milestone was even more delayed as he grew into adulthood. My parents did everything they could for him, moving us from New York to Los Angeles in the early 1970s to be closer to a pioneering autism program at the University of California at Los Angeles, opening their own day care center for the developmentally disabled, even creating a one-on-one assisted-living situation for Noah — years before this became common — so that they could delay institutionalizing him.

I toured those state hospital systems with my parents when we started looking for a place for a growing-up Noah. Those were terrifying visits: adult patients wearing helmets and restraints, howling and hitting themselves. This was during the ’70s when the scandals at state psychiatric hospitals like Letchworth Village in New York and Camarillo in California were making terrifying headlines. Clients at Camarillo were dying from neglect and improperly administered medications. We had to keep Noah out of that system for as long as we could.

Eventually, when he was 22, Noah had to leave home. He graduated from his special needs school on a bright, sunny Orange County day; he was beaming, handsome in his bright blue cap and gown.

But for the profoundly autistic, graduation is perhaps the saddest day in their lives. For those who cannot enter the work force, continue on to more education or find some sheltered workshop environment with adequate staffing, there are few options. Far too few programs and resources are allocated for adults with autism.
Noah has been in and out of sheltered workshops, but these are always under threat because of state budget deficits. Noah has been asked to leave some programs because he was too low-functioning.

For several years, we have been trying to find a day program where he might interact with others and perhaps perform some simple, menial job. We have long since given up any hope that he might continue in adulthood the behavioral therapies that are now considered standard for autistics; unless the family is willing to pay the bulk of the cost, there is very little out there for men and women like Noah.

For purposes of fund-raising and awareness-raising, autism has been portrayed as a childhood disease. The federal Department of Health and Human Services has characterized it as a “disorder of childhood.” There are practical reasons for this: early intervention has been shown to be the most effective therapy. The trend in autism treatment has been to steadily lower the age at which intensive intervention commences — as early as five months, according to some experts. Yet autism is not a degenerative condition; the vast majority of those 1 in 150 children who are afflicted will survive to adulthood.

As I spoke with the experts, I began to see that the focus on children had influenced not only the marketing of autism, but also research and treatment. It seemed the majority were interested in children only, the younger the better.

“The best time to look is at the early ages, when autism is developing,” Sophia Calimaro, vice president of research at Autism Speaks, told me a few months ago, explaining that was also where there had been the most treatment success. “I’m not making excuses, but that’s really why more research into adults with autism hasn’t been done.”

Low-functioning adult autistics are viewed with sympathy but not much scientific inquiry. No one has broken down how many dollars are actually flowing to adult autistics, but at the International Meeting for Autism Research in Seattle in May 2007, I counted more than 450 papers and presentations and three dozen talks on autism given by academics and specialists; of those, only two dealt with low-functioning adults, and neither included a cohort large enough to be statistically relevant.

The careful measurements of brain function, or dysfunction, were almost all done on children. A few cognitive and emotional development studies dealt with adults, but these were overwhelmingly focused on high-functioning autistics and people with Asperger’s syndrome.

Autism Speaks, the major sponsor of autism research projects, has not broken down the proportion of funds that go to adult-oriented research, but Mr. Bell, whose teenage son is autistic, laments that “it’s low, too low. ... We have to change the paradigm for those of us who have kids who are going to grow up and need more and better services.”

That change can’t come soon enough. Even with state-of-the-art early intervention — eight hours a day, seven days a week — many autistics will need support throughout their lives. The reality is that very few, perhaps only 10 percent, of those as severely autistic as Noah benefit from the current interventions to the point where they become functioning members of society.

If the current C.D.C. estimation of prevalence is correct, then there will be an awful lot of adult autistics who need lifetime support and care. Noah’s life has been a grim study in how scarce those resources are. Without them, his behavior has regressed.

A recent “psychological and psychopharmacological” report by the California Department of Developmental Services said Noah exhibited a “failure to develop peer relationships, a lack of social or emotional reciprocity,” and it described some of his “maladaptive behaviors” like “banging his head against solid surfaces, pinching himself and grabbing others.”

“Noah may also,” it noted, “intentionally spit at others, pinch or scratch others, dig his fingernails into others, and/or pull others’ hair. He may bite, head-butt and hit others; throw objects at others, and hit/slap his head when he is highly agitated.” He is a handful.

Now, imagine a few hundred thousand Noahs.

Karl Taro Greenfeld is the author, most recently, of “Boy Alone: A Brother’s Memoir.”

Sunday, May 24, 2009

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.

Friday, May 22, 2009

Wednesday, May 20, 2009

Sen Wilson Concerned Senate Republicans Plan to Gut SB 1055 to Protect Insurance Industry…Again


Oklahoma State Senate

For Immediate Release: May 20, 2009

Wilson Concerned Senate Republicans Plan to Gut SB 1055 to Protect Insurance Industry…Again

A bill waiting to be heard on the Senate floor has been stripped down by Senate Republicans to protect the insurance industry, a pattern of behavior by the majority party that began quickly after they came into power for the first time in state history.

Senator Jim Wilson, one of the Senate’s watchdogs for insurance industry friendly bills, says the Senate Republicans appear to be ready to abandon consumer friendly health care reforms in the current version of SB1055, set to be heard before the legislature adjourns Sine Die on Friday. Those consumer friendly provisions included:

- Making it unlawful to pay bonuses to insurance executives or cancellation of policies or denial of claims; and

- Requiring insurance plans to spend 75% of the premiums they collect on actual medical care.

“Medicare spends 98 cents of every Medicare dollar on actual care," Senator Jim Wilson stated. “But in Oklahoma, big insurance only has to pay 60 cents of every dollar. I guess Senate Republicans feel that big insurance just isn't making enough profit on the backs of some of the most vulnerable Oklahomans.”

Wilson concluded by saying, “My question is quite simple: Is there anything more we can do to help out friends in the insurance industry? Perhaps they would like a wafer thin mint."

For more information contact:
Sen. Wilson's Office - 405-521-5574

Autism awareness plate doesn't reflect Republican priorities


FOR IMMEDIATE RELEASE
Tuesday, May 19, 2009

Democratic Floor Leader Mike Brown
State Capitol Building, Rm. 545
Oklahoma City, OK 73105
(405) 557-7408
Contact: Karina Henderson, (405) 962-7819

Brown suggests special license plate
Autism awareness plate doesn't reflect Republican priorities

Oklahoma City (May 19, 2009) State Capitol – After the House passed SB2, a bill to add several special license plates to those already available from the state, Democratic Floor Leader Mike Brown questioned if the House Republicans accidentally omitted one plate.

The bill would create, among others, an Autism Awareness license plate, but Rep. Brown suggested it would be more true to House Republicans' priorities if they had also included an Erectile Dysfunction Awareness plate.

"Since my Republican colleagues already voted once that they don't believe insurance coverage for autism treatment is at least as important as coverage for erectile dysfunction therapies, I would have expected them to be consistent and promote erectile dysfunction awareness right alongside autism awareness," said Rep. Brown, D-Tahlequah.

In February, Rep. Brown proposed an amendment that would require no Oklahoma insurance carrier can provide coverage for erectile dysfunction unless they also provide coverage for autism spectrum disorders. The amendment, which was offered to HB1028 – a bill that adds provisions to how insurers time and process insurance claims – was voted down along strict partisan lines, 59-37.

"Every Republican in the House chamber that day, including the Republican author of the license plate bill, voted against my amendment. They are on the record as saying that sexual pleasure is more important than the health of children with autism and the struggles of their families," he stated.

"If that's your real priority when it comes to health care, well, I disagree – but I'd at least like to see some consistency out of my colleagues across the aisle."

SB2 passed the House today 89-2