Monday, November 8, 2010

Health Insurance Companies Fight Back Against Mental Health Equality Law

Editors note: We need to keep an eye on this. This could be used as a template to repeal insurance coverage for autism.

In 2008, when comprehensive healthcare reform was only a theory in Democratic presidential primary debates, one bit of changes occurred. That year, Congress passed a bill that requires health insurance companies to treat physical and mental illness equally. This law was mostly spearheaded by Democrats, though mental health parity is nowhere near as much of a controversial issue as general healthcare reform has turned out to be.

Specifically, the law prevents discrimination against mental health and substance abuse patients by insurers. They can no longer be charged higher deductibles or co-payments of medications or hospitalizations than would be charged if they had a physical illness. For example, the insurer can no longer limit the number of reimbursed days a patient can remain in a hospital or in-patient treatment beyond the standard limit they have for other types of care. Nor can they limit the number of outpatient visits to a psychiatrist.

The health care industry has supported the law, and insurance companies support its intent. However, formal guidelines for enforcing the law were only released recently. Some fear that the Obama administration’s rules go too far.

While they agree with the goal of ending discrimination towards mental health care, insurers feel that the federal government regulating so-called “non-qualitative treatment limits” is an overstepping of its boundaries. Major health insurance plans believe that the intent of the bill is not to equalize provider reimbursement of services. As a result, interfering in how they manage care will have a negative impact, especially since the rules are so vague that they could potentially apply to any method used to manage benefits.

On the other hand, mental health advocates believe that doing so is necessary because of historically low reimbursement rates. Their view is that if insurers don’t pay competitive rates, they will attract few mental health services to their networks. Patients will therefore be forced to either travel long distances to receive services, go out-of-network for more expensive treatment, or forgo treatment altogether due to cost. In effect, that puts more of a burden on those with mental illness than people with physical illness–therefore violating the spirit of the law.

Another aspect of the rules disliked by Aetna, Blue Cross Blue Shield, and other large health insurance companies is the provision that mandates them to charge one combined deductible, as opposed to separate deductibles for medical and mental health. They predict that the requirement will actually make mental health care more expensive, but Obama believes that it is necessary to avoid inappropriate distinctions.

About the author: Yamileth Medina is an up and coming expert on Affordable Health Insurance and Healthcare Reform. She aims to help people realize that they can find a quality health insurance plan right now. Yamileth lives in Miami, FL.

Thursday, November 4, 2010

Expert Q&A: My child has autism

Posted October 29, 2010 at 9:13am by Elaine Saly

Question: My 16 year-old son has autism. He currently receives survivor benefits from Social Security. These will end when he's 18; however, his autism won't. Will health reform provide any services or support for our autistic children as they become adults?

Answer: Yes, your son and other young adults with autism will benefit from many provisions of the Affordable Care Act. The new law provides new protections for people with developmental disorders, ensures that mental health services are covered, and expands community-based supports for people with disabilities or chronic conditions who need long-term care.

Consumer protections: Currently, many people with developmental disorders face discrimination from private insurers based on their “pre-existing conditions.” Beginning in 2014, the new law will prohibit health insurers from denying coverage to any American because of a pre-existing condition, such as autism, and will stop insurers from excluding coverage of services for these conditions. These protections are already in effect for children under the age of 19. Starting in 2014, insurers will also be prohibited from charging people higher premiums because they have a pre-existing condition. In addition, the Affordable Care Act stops insurance companies from imposing lifetime or annual limits on the dollar amount of health benefits that they cover. The prohibition on lifetime dollar limits on coverage is in effect now, and the ban on annual limits will be phased in until the limits are completely prohibited in 2014. These new protections will ensure that people with developmental disorders have access to reliable and comprehensive health coverage.

Comprehensive benefits: Under the law, all new health insurance plans (sold on or after September 23, 2010) must cover certain preventive services, including autism screenings and developmental assessments for infants and young children, at no cost to consumers. Starting in 2014, plans sold through the new health insurance exchanges must cover mental health services, including behavioral health treatment, and they may not impose more restrictive coverage limits for these services than they do for physical health services.

Long-Term Services and Supports: People with developmental disorders or chronic health problems who require long-term services and supports will also benefit from the Affordable Care Act. The law will expand access to long-term care delivered in peoples’ homes and communities (instead of in institutional settings like nursing homes) by allowing states to increase the income eligibility levels for these programs. It also lets states tailor their home- and community-based service programs to meet the needs of certain populations, like children with autism or adults with traumatic brain injury. Additionally, the Affordable Care Act prohibits states from limiting the number of people who can get community-based services and supports and stops states from keeping people who need these services on waiting lists. The law also provides states with new federal funds to assist with the cost of personal care services for individuals with developmental and physical disabilities.

The Affordable Care Act is a huge step toward improving equality in access to health care for people with developmental disorders. As a result of the law, people with behavioral and mental health needs will finally be treated fairly by insurers and will be guaranteed access to affordable and comprehensive coverage, and those needing long-term services and supports will be able to live more independently.

Wednesday, October 27, 2010

ND lawmakers say autism bill needs more study

Editor's note. ND state Rep Bette Grande stated that the bill is too broad and needs more study. Translation, insurance lobby has a strong advocate in Rep Grande. There are 23 other states that have focused the legislation. No different in North Dakota.

Published: Tuesday, 26 Oct 2010

BISMARCK, N.D. - Lawmakers say they're not ready to push the North Dakota Legislature to support mandatory insurance coverage for autism therapy.

On Tuesday, a legislative benefits committee declined to recommend a bill to require coverage. The Legislature is likely to take up the proposal anyway next year.

More than 20 states require insurance companies to pay for autism treatment, which can cost thousands of dollars a year.

Advocates for people with autism say it helps alleviate the condition. Autism is a brain disorder that affects a person's ability to relate to other people.

Fargo state Rep. Bette Grande (GRAN'-dee) is chairwoman of the committee. She says the bill's insurance coverage requirement is too broad and the subject needs more study.

Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Thursday, October 21, 2010

Announcing The Combating Autism Act Reauthorization Coalition

Courtesy of our friends at Age of Autism.

President Bush signed into law the Combating Autism Act (CAA) on December 19, 2006. This landmark legislation authorized $700 million in research funding over five years and set the goal of finding the cause (including possible environmental causes) and treatments for autism. The Act sunsets on September 30, 2011.

A coalition of leading community organizations is coordinating an effort to seek reauthorization and has prepared a list of Guiding Principles. A broad consensus on these principles is the essential first step before legislation can be crafted to implement these ten principles as policy (details on each principle follow below):

1) Recognize that our country faces a national public health emergency.

2) Direct increased resources for a lifespan of autism services through established services infrastructure at the state level.

3) Dedicate federal research to strategic research that can halt the autism epidemic in its tracks.

4) Conduct autism surveillance with the scope, timeliness and rigor appropriate to the need.

5) Focus strategic new research in areas that can yield meaningful near term results.

6) Keep individuals with autism safe from accidental death and injury.

7) Prevent harmful restraint and seclusion of autistic individuals.

8) Address critical gaps in vaccine safety research and policy governance.

9) End health insurance discrimination against individuals with autism.

10) Develop autism policy with an open, transparent approach.

We invite all organizations to mobilize and join in this vital effort. Contact information, an updated list of organizational members, and relevant documents can be found at

The theme underlying all the Guiding Principles is that we need a legislative response driven by the seriousness of the epidemic, by the opportunity to prevent new cases and treat existing cases with the same urgency as our national response to hurricanes, floods, and pandemics, and by the necessity to provide adequate supports and services to facilitate people on the spectrum to lead full and complete lives. Accordingly, the first principle calls for the formal legislative recognition of the autism epidemic as a national health emergency without the usual hedging language from CDC that they don’t know how much of the increase is “real.”

The original Act was primarily focused on research with some additional funding for outreach and awareness education. It established the Interagency Autism Coordinating Committee (IACC) to advise the Secretary of HHS on all matters relating to autism and develop and update an annual strategic plan for autism-related research. CAA 2011 must restructure management of the research enterprise into a new National Institute for Autism Research, re-engineer the grant-making process to rapidly achieve the goals of prevention and treatment, and ensure vigorous and meaningful accountability, oversight, and broad community participation.

Research Funding Priorities Research funding must be re-prioritized and focused on the specific areas with the greatest payoff to achieve the goals of prevention and treatment. It is especially important that scarce research dollars be spent wisely in order to provide the greatest and quickest leverage. Accordingly, there must be a considerably greater focus on environmental factors, epigenetics, and on “translational” research that can quickly link bench science and clinical research to immediate medical and behavioral improvements. Money must be invested in research yielding the greatest benefit in the shortest time.

The legislative history of the original Act called specifically for research on vaccines as a potential cause of autism. However, despite repeated requests from across the community, ongoing compensation of vaccine-caused autism in Vaccine Court, recommendations and coordination from the National Vaccine Advisory Committee, and privately-funded research that continues to reveal damage done by vaccines to children and animals, IACC has refused to fund essential research such as a comprehensive comparison of vaccinated with unvaccinated children. CAA 2011 must specifically require a comprehensive program of vaccine safety research focusing on an ongoing comparison of vaccinated with unvaccinated children and animals and on the mechanisms of injury.

The CAA provided for research relating to services and supports but was not designed to actually fund them. Several bills have been introduced during recent sessions relating to demonstration projects and funding for services and supports, training, restraints and seclusion issues, wandering disorder, and infrastructure, but none of these has passed.

Especially in view of under-funding of existing mandates in Medicare and the aging of the leading edge of the epidemic through their teenage years and transitioning into adulthood, comprehensive legislation is needed to address – and fund – these complex issues. CAA 2011 must direct significantly increased resources for services through existing state-level infrastructure to the families and providers who are in the best position to meet the specific needs of individuals with autism. As with research governance, CAA 2011 must improve services governance by separating IACC into separate specialist committees that will be better able to focus on the quite distinct constituencies, specialties, and challenges faced in marshaling and coordinating the services-related resources throughout the federal government.

Because the urgency of the response and need will be aided by timely and accurate data on the scope and nature of the epidemic, CAA 2011 must significantly strengthen the gathering and reporting of information on the number of individuals with autism, the severity of their diagnoses, and their specific needs for services and interventions.

Individuals with autism face unique safety issues. Legislation must address these by guaranteeing that children in school enjoy a learning environment free from dangerous restraints and seclusion and by providing first-responder training and funding for systems to prevent wandering and ensure the safe return of children to appropriate supervision.

Legislation reforming various aspects of insurance has passed in over 20 states, and the recently passed national healthcare reform legislation addresses some aspects. However, in view of the strong popular support for “repeal and replacement,” CAA 2011 must provide for parity of coverage with other medical conditions and ban all forms of insurance discrimination arising from an autism diagnosis.

The reauthorized CAA must be the product of an open and transparent process. In the present toxic environment in Washington, its chances of passage will a strong community consensus on first, guiding principles, and then the details of policy implementation developed through a close collaboration of organizations that have disparate interests and objectives. Most important, passage will require an extraordinary effort in grassroots lobbying from throughout the community. In this election, and in preparation for the reauthorization effort, take the time to visit your local Representatives and Senators and educate them as to the urgent of the community for a comprehensive and coordinated policy response to the autism epidemic.

We invite all organizations to mobilize and join in this vital effort. Contact information, an updated list of organizational members, and relevant documents are at

Age of Autism
Autism Action Network
Autism One
The Autism Research Institute
The Autism Society of Connecticut
The Autism Society of Greater Phoenix
Elizabeth Birt Center for Autism Law and Advocacy
Generation Rescue
Greater Brunswick Special Families
National Autism Association
Talk About Curing Autism
The Pilot House

Thank you.

Missouri State Senate race turns personal over autism

(KMOX) — Claims made on a recent campaign flyer have blown up into a major issue between state Senate candidates Barbara Fraser and John Lamping.
They’re both vying for the seat being given up by Joan Bray, who’s being term-limited.

Fraser sent out a mailer saying Lamping was against health care coverage for children with autism.

Turns out Lamping’s 19-year-old daughter has a form of autism.

“Its amazing that my opponent says this is something that I’m running on,” says Lamping. “She’s fabricated this whole thing.”

To which Fraser replies, “Mr. Lamping proposal to let insurance companies sell policies across state lines would absolutely one-hundred percent allow insurance companies to deny coverage for autism.”

Listen to their full interviews with Charlie Brennan click here and go to the bottom of the next page.

NY Governor vetoes bill to mandate autism health-insurance coverage

Gov. David Paterson has vetoed legislation that would require state-regulated health-insurance companies to cover “evidence-based, peer-reviewed and clinically proven” treatment and therapy for people with autism spectrum disorder, saying it would amount to an unfunded mandate because it would increase health-insurance premiums state and local governments pay and the premiums for Child Health Plus, a government insurance program for children whose families are not eligible for Medicaid. The total annual cost of the legislation could be $70 million, according to the governor, and the state budget does not include money to pay for that.

The cost of commercial health insurance would also grow if the legislation were implemented, and could lead to loss of coverage for some New Yorkers, he said in the veto.

The state has a number of programs that provide early intervention for children with autism and other developmental disorders, although many families have to pay a significant amount of money each year to get all the services they believe their children need.

Paterson, who has about two months left in his term, wrote that he is “extremely sympathetic to the very real struggles faced by families of individuals” with autism spectrum disorder, which he said is a priority for society to address. Autism spectrum disorder, which occurs in roughly one out of every 100 kids, is characterized by difficulty with speech and social interaction and repetitive behavior patterns. Symptoms vary depending on where children are on the spectrum .

“It will be a subject of my continued advocacy as a private citizen. But now I am governor, and I cannot sign a bill that would impose costs that the Legislature does not fund,” Paterson wrote.

The bill has been the subject of intense lobbying by autism advocates who support and those who oppose the legislation. It was sponsored by Sen. Neil Breslin, D-Delmar, Albany County, and Assemblyman Joseph Morelle, D-Irondequoit, Monroe County.
Opponents said it would hurt people seeking treatment for autism because of the “evidence-based, clinically proven and peer-reviewed” standard, which is not required for other medical problems, and would shift costs from insurance companies to counties and taxpayers for early intervention services.

The governor said another flaw in the bill is it would require the state Health and Insurance departments and a few other state agencies to develop regulations for health insurers within a year and update them regularly, but the state budget does not provide them with the extra resources they would need to do this.”

Thursday, October 7, 2010

Cost of Nevada autism care mandate debated

Oct. 07, 2010
Copyright © Las Vegas Review-Journal



For a change, we're not going to talk politics today.

Sure, Nevada's autism health-insurance mandate became a red-hot campaign topic in September, with Senate Majority Leader Harry Reid, D-Nev., making a major issue of Republican candidate Sharron Angle's opposition to the pending requirement.

Rather than discuss the back-and-forth between the candidates and their affiliated interest groups, though, we want to ask a simple business question: How much will that autism regulation really cost, anyway?

A big Nevada insurer who didn't want to discuss the political hot potato on the record has crunched the numbers and found the mandate will add 2.2 percent, or about $100 a year, to Nevadans' annual premiums.

That's a "very significant impact," given that most new mandates add less than 1 percent to premium costs, said J.P. Wieske, executive director of the Council for Affordable Health Insurance in Alexandria, Va.

Autism's effect on insurance policies sold in Nevada will be steeper than usual because the condition costs so much to treat. A study from the Harvard School of Public Health found that autism care for one patient can run $72,000 a year. The Centers for Disease Control and Prevention estimates that just under 1 percent of the country, including 730,000 people up to age 21, battles an autism-spectrum disorder.

Nevada's mandate requires insurers selling policies in the state to cover up to $36,000 a year of autism-related care starting Jan. 1, though the state exempted its Medicaid program after officials found it would cost the program $30 million over two years for coverage of autism.

Those are big numbers, so naturally, autism advocates and insurance trade groups alike make potent economic appeals supporting their side. Mandate proponents acknowledge it costs to treat autism, but they argue it's more expensive to let autistic kids languish and end up institutionalized or on disability for life.

Ralph Toddre, a commissioner for the Nevada Commission on Autism Spectrum Disorders, pointed to studies that say it can cost millions over a lifetime to provide custodial care for autistic adults who lacked treatment as children. One study, from the Harvard School of Public Health, pegged the cost at $3.2 million, though Toddre said he's seen reports pushing the estimate to as much as $8 million.

"The bottom line is, you can pay for it now, or you can pay an awful lot more later if you don't treat it," said Toddre, who has two children, ages 12 and 9, with the condition.

And Jan Crandy, a Las Vegas advocate with a 17-year-old autistic daughter, took issue with the 2.2 percent premium impact. She said actuarial research developed in early 2009 to support the mandate forecasted a smaller premium effect of around 1 percent.

Wieske's council published a 2009 study that also set Nevada's autism premium impact at roughly 1 percent, but Wieske said the group is updating its numbers, because the council's initial assumptions didn't account for "explosions" in the number of autism diagnoses and the condition's care costs. He said he now believes the Nevada insurer's projection of a 2.2 percent premium impact is likely to be at least fairly close to the actual effect. The state's actuarial study also acknowledged that the future costs of some therapies were "uncertain" due to increased insurance coverage.

Assemblyman James Ohrenschall, D-Las Vegas, sponsored the mandate, which passed the Nevada Legislature 63-2. It likely won't be clear until 2011 just how much the mandate will cost, Ohrenschall said, but with thousands of kids statewide grappling with autism-related conditions, the Legislature needed to assist.

"The market was not helping these children," Ohrenschall said. "These are families who work very hard and pay a lot of money to have health insurance, and then it didn't cover what they needed."

But any noticeable premium jump could price some Nevadans out of health insurance altogether, Wieske said.

"We know from past studies that fewer people buy coverage as it becomes more expensive. It's the simple reality," Wieske said. "There's a balancing act there."

Susan Pisano, a spokeswoman for Washington, D.C.- based trade group America's Health Insurance Plans, said her association isn't concerned about the autism mandate itself. Rather, the organization's issue is with policy requirements in general, which she said typically become law without regard to their effects on health-care quality or costs. Nor do mandates always come from scientific evidence that certain treatments will help, she said.

The 50 states have passed 2,133 mandates on health insurers, according to Wieske's group. Nevada ranks No. 10 in the nation for its number of insurance mandates, with 52 such requirements.

"Over the last 20 years, we have seen the enactment of literally thousands of mandates across the country that have made the cost of coverage higher, and have put insurance coverage out of reach of more employers," Pisano said. "If you're a parent and you want services for your children, you're not going to be persuaded by that argument, but the other piece of this is that we've got consumers, patients and employers saying to us, 'If health-care costs continue to go up, we're not going to be able to afford what we have now."

Autism mandates in particular have grown popular among states in the past two to three years. Nearly half the states, 23, require insurers to cover it. Some of the surge comes from high-profile advocacy efforts in front of state legislatures, Wieske said, while part of the push involves sympathy for a condition that largely affects small kids. Plus, it's only been in recent years that doctors began to better understand autism and its treatments, he said.

But at least part of the jump in autism mandates originated with subtle attempts to shift the cost of care for the condition away from school budgets and into private insurance, Pisano said. Wieske agreed, noting that interventions such as speech therapy were typically covered through school districts and states, until widespread budget crunches pinched what the public sector could or would provide.

"It's absolutely true that we don't want to leave these children untreated," he said. "The question we have is whether insurance is the appropriate way to cover it. If these treatments were for an adult who had a stroke, you wouldn't find health insurance covering it. It might be covered under a long term-care policy. That's what this issue is really about -- money that was meant to be spent on (autism care) through various programs in schools is gone, so if they can, they want to foist those costs off onto insurers."

Advocates such as Toddre and Crandy say Nevadans are paying for autism care one way or another, and private health insurance provides the best venue for delivering treatment. More kids will be diagnosed with autism than with childhood cancers, juvenile diabetes and HIV combined, Toddre noted, yet insurance covers expenses for the latter three ailments.

"It's just not right. If there's an effective treatment out there that can help a lot of kids have a better quality of life and have a chance at a life as we know it, to deny that opportunity is just wrong," he said.

Besides, said Crandy, defraying the cost of pricey, unexpected conditions is the purpose of health coverage.

"A lot of people will never get cancer, and cancer treatment is expensive. That's what risk pools are for," she said. "Everybody is paying in so that everything that's covered can be treated."

Contact reporter Jennifer Robison at jrobison@review or 702-380-4512.

Tuesday, October 5, 2010

Michigan Parents Testify Before Lawmakers On Autism Coverage

Tuesday a panel of parents and experts testified before state lawmakers in an effort to help get Michigan to require health insurers to cover treatment for autism.

It is a disorder which affects socialization and learning for some 15,000 Michigan children. "Many children with autism will need special education for their entire school career, and will need institutionalization as adults if they don't get the treatment," said Lorri Unumb, Autism Speaks.

Treatment that for many families is a huge financial drain. "We've borrowed. I've financed from my retirement account, whatever it takes. It's something that you would almost sell your soul for. Almost," said Stacie Rulison who's son has autism.

Experts say treatment for autism works but it's expensive. They say it can cost tens of thousands of dollars a year. That's why parents and experts are trying to convince lawmakers Michigan should join 23 other states that require health insurers to cover autism treatment.

"Sometimes I will be talking with families who are informing me of their plans to leave our state to go to some other state where they can receive this treatment that is covered by insurance," said Ruth Anan, Autism Expert.

Experts say it's an investment that will push insurance costs up slightly, less than a dollar a month for every individual. But they say it's well worth the price to help children with autism.

"If they do get treatment many will go on to lead productive and independent lives," said Unumb. Tuesday's public hearing is the last of four on autism health insurance reform. Lawmakers say they'll use the information to draw up a report before considering legislation.

Sunday, October 3, 2010

Court Ruling in autism case hailed as a breakthrough for insurance coverage

Editors note: During the 2009 Oklahoma Legislative Session, Rep Kris Steele, drafted legislation dubbed as the Republican Autism Plan to create an ABA research project at OUHSC. Autism advocates informed him that ABA has over 25+ years of clinical research and we do not need to spend hundreds of thousands of tax payer dollars to reinvent the wheel. This is nothing more than a stall. - Wayne

By Bryan Denson | OregonLive

For two years, Lisa McHenry fought a legal battle to force her insurer to pay for her son’s specialized autism therapy. But PacificSource Health Plans of Springfield refused and prevailed at every turn in court.

Then came a ruling this week by U.S. Magistrate Judge Janice M. Stewart in Portland, who ordered PacificSource to reimburse McHenry for the last eight months of her boy’s therapy.

“It’s the first decision in the country where a court has decided that ABA therapy (Applied Behavioral Analysis) is medically necessary for children with autism,” said Megan Glor, one of McHenry’s attorneys. “Insurance providers have been very reluctant to cover ABA therapy because it’s very expensive.”

The case offers a glimpse at opposing forces — insurers that won’t pay for the therapy and a nationwide parents movement pushing them to cover the disorder as a medical condition.

McHenry, who lives in Happy Valley, sued PacificSource in May 2008 to force the company to pay for her son Joe Joe’s therapy.

The case appeared to be resolved earlier this year, when Stewart ruled in favor of the insurer. The magistrate found that the boy’s therapist, Emily Hoyt, wasn’t an eligible provider under McHenry’s policy.

But in February, the state Department of Human Services certified Hoyt an eligible provider of therapy to Joe Joe, now 6.

On Tuesday, the judge ruled that PacificSource owed McHenry and her husband, Jon, their out-of-pocket expenses since then.

“Jon and I are absolutely over the moon. This is huge for Oregon,” Lisa McHenry said Wednesday. “This is huge for our family.”

Stewart ordered parties to the lawsuit to come up with a statement of past-due benefits.

Glor said she thinks PacificSource will be required to cover more than just the last eight months, but an additional $50,000 that the McHenrys paid for their son’s therapy from January 2007 to last February. A lawyer for PacificSource said the court has already ruled that the company doesn’t owe retroactive benefits.

“At the end of the day, the court said they don’t get any retroactive benefits,” said Richard Hansen. “She’s entitled to whatever costs she’s incurred since February, when the therapist became — under the court’s decision — an eligible provider.”


Wednesday, September 29, 2010

Public Interest Lawyers Show Interest in Autism

Sept 28, 2010 This is a guest post by Lorri Unumb, Autism Speaks senior policy adviser and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.

Autism is a hot topic for discussion at various types of conferences these days, from epidemiologists to economists to educators. You still, however, don’t often see autism on the agenda at legal conferences. That’s why I was so excited over the summer to have the opportunity to speak about autism legal issues at a national conference of legal aid attorneys and encouraged by the keen interest demonstrated by the lawyers in attendance.

Every state in the nation has at least one legal aid organization, which provides legal services to the poor, and a protection and advocacy organization, which provides legal services for the disabled. Lawyers who work at these organizations, as well as public defenders (who work in the criminal arena), are typically members of the National Legal Aid & Defenders Association (NLADA). As set forth in its website ( NLADA champions effective legal assistance for people who cannot afford counsel, serves as a collective voice for both the civil legal aid and public defense communities throughout the nation, and provides a wide range of services and benefits to its individual and organizational members. Founded in 1911, NLADA is the oldest and largest national, nonprofit membership organization devoting all of its resources to promoting justice for all in the United States.

Among its activities, the NLADA holds national conferences and trainings for public interest lawyers. My husband, Dan Unumb, who is Director of Litigation at South Carolina’s legal aid organization, proposed trainings on “Representing Families with Autism” for two of NLADA’s summer conferences held jointly in July in Chicago. NLADA enthusiastically accepted and supported the proposal.

The first workshop was presented as part of the Litigation and Advocacy Directors Conference, which is designed for experienced litigation and advocacy directors to assist them in identifying, promoting, and pursuing cutting-edge legal issues in their programs. A panel of five legal experts educated the attorneys on autism legal issues ranging from health insurance to special education to Medicaid. Presenting attorneys included Sue Tobin of Ohio Legal Rights Service and Sarah Somers of National Health Law Project on Medicaid issues, Tracey Spencer Walsh of Mayerson & Associates on special education law, and Dan and me on health insurance and other autism-related issues.

The second workshop was geared to front-line legal aid attorneys who handle day-to-day representation of low-income or disabled clients. At this workshop, Dan and I were joined by Kirby Mitchell, Managing Attorney of one of South Carolina Legal Services’ largest offices, to present a broad overview of legal issues surrounding autism including health insurance, special education, Medicaid and life-planning issues such as guardianship, conservatorships, custody and child support, hospital collection defense cases, bankruptcy, Medicaid trusts, tax planning, and Social Security disability actions.

The range of legal issues a family affected by autism may face is vast, and the need for lawyers, judges, and judicial staff to be educated on them is equally great. This outreach is critical to improving legal representation, judicial decisions, and the overall response of the legal system to the complex challenges posed by autism. This summer’s presentation was a good step in the right direction, and Autism Speaks is committed to making further inroads toward ensuring effective legal representation of families with autism.

Friday, September 24, 2010

Sharron Angle Pans Mandated Health Care Coverage For Autism Treatment, Maternity Leave (VIDEO)

Speaking at a Tea Party rally last year, Nevada Republican Senate candidate Sharron Angle appeared to mock the notion that health care coverage for autism treatment and maternity leave should be mandated.

"Take off the mandates for coverage in the state of Nevada and all over the United States," she charged in making remarks that were captured on camera and now are being circulated by the Nevada State Democratic Party. "You know what I'm talking about. You're paying for things that you don't even need. They just passed the latest one, is everything that they want to throw at us now is covered under 'autism'."

In video shot of Angle making the criticism, she can be seen making air quotes as she says "autism."

The Tea Party darling went on to say, "So, that's a mandate that you have to pay for. How about maternity leave? I'm not going to have anymore babies, but I sure get to pay for it on my insurance. Those are the kinds of things that we want to get rid of."

Advocates want ND insurance coverage for autism

BISMARCK, N.D. (AP) — North Dakota's Legislature should require insurers to help pay for treatment of children with autism, advocates say.

Autism is a brain disorder that affects a person's ability to relate to others, and affects children in different ways. Experts say childhood therapy for autism spectrum disorder is important, but extensive behavioral therapy can cost more than $70,000 for a year of treatment.

A North Dakota legislative committee is considering a bill to require the health insurance plan for state workers to cover treatment for autism disorders. The committee's chairman, Rep. Bette Grande, R-Fargo, said the panel will decide in October whether to recommend that the Legislature approve the idea next year.

An analysis by Deloitte Consulting LLP estimates the mandate could increase the state health plan's expenditures by almost $3 million annually.

Nicholas Gates, a Dickinson police officer, asked lawmakers on Tuesday to support the measure. He was accompanied by his 8-year-old son, Noah, who stood shyly by his father's side and said little. Nicholas Gates said his son was diagnosed in late 2005.

"When Noah was first diagnosed, we were very overwhelmed. We didn't know where to turn, especially when we were told that our son needed specific treatment, and we weren't able to get that because our insurance company would not cover it," Gates said. "We were able to get some therapies ... but we were unable to get the social and behavioral therapies that Noah required."

The federal Centers for Disease Control and Prevention estimates that one in 110 children has an autism spectrum disorder. In 2006, the average prevalence for 8-year-old boys was eight per 1,000 children, the agency said. The spectrum occurs more often in boys than girls.

At least 21 states require insurers to provide treatment for autism, according to the National Conference of State Legislatures

Sunday, August 22, 2010

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


Oklahoma Watchdog, editor

Posted: August 22, 2010

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Copyright 2010 Oklahoma Watchdog

Thursday, August 12, 2010

Parents of children with autism: We struggle alone

Monday, August 9, 2010
By MICHAEL E. YOUNG / The Dallas Morning News

Her day might begin at 2 or 3 in the morning, when her 9-year-old autistic daughter, Ashlyn, wakes up next to her. And from that moment on, Jackie Polvado's life is a full-out sprint.

"Ashlyn still sleeps with me because it's the only way we can get any sleep. But I've been up day and night, like when my daughter was up for 48 hours, screaming," said Polvado of Keller.

"It's exhausting, and there's no end in sight."

For families with children with autism spectrum disorders – a range of developmental disabilities that cause social, communication and behavioral problems – each day can be emotionally overwhelming, stress-filled and isolating.

Family and friends shy away. The child's behavior can leave parents prisoners, trapped at home. If they venture out, passers-by stare, wondering why the child isn't under control.

Click here to read the rest of the article.

Retired military families not eligible for autism treatment benefit

Tricare denies a claim for a costly but apparently effective therapy that some states now require insurers to cover.

By Jennifer Martinez, Tribune Washington Bureau

August 8, 2010

Reporting from Washington

When Zachary Berge was diagnosed with autism shortly after his second birthday, he couldn't speak a word. He often threw tantrums because he couldn't express himself.

His parents turned to "applied behavioral analysis," widely known as ABA therapy and recognized by the medical community as one of the most effective autism treatments for children.

But ABA therapy doesn't come cheap, and it has cost the Berge family of Crestview, Fla., nearly $56,000 — a hefty bill they've had to pay out of pocket because the treatment isn't covered by the family's health plan, a program for active and retired military families known as Tricare.

A supplemental benefits program available under Tricare offers families of active-duty members as much as $36,000 a year each to cover the cost of the therapy and other autism treatments. But the Berges are not eligible for that program because Zach's father, Kenneth Berge, retired from the Air Force in 2006.

"I thought it was a fluke that it's not covered," said Dawn Berge, a former college speech instructor whose full-time job now is to take care of Zach. "We believe with our military members serving like they have, this is something they would be covering."

There are nearly 8,800 dependents of retired military personnel who have been diagnosed with autism, according to 2007 Department of Defense figures.

At 5, Zach can put together two-word phrases, eat with utensils and finally say "Mom" and "Dad," something his mother calls "a blessing." His progress, she believes, came in part from his expensive treatments.

ABA therapy breaks down behaviors into small steps that can be taught individually to a child, using rewards as a motivator. For example, to teach a child to say hello to others, an ABA therapist will grant access to a playground only if the child says hello to the other children there.

"Children with autism don't learn these important social behaviors on their own," said Dr. Grace Gengoux, a clinical instructor in child and adolescent psychiatry at Lucile Packard Children's Hospital at Stanford University. "They need this kind of structured teaching."

The Berges have sued the Department of Defense, which administers Tricare. A department spokeswoman declined to comment, saying she was not authorized to speak about an ongoing legal matter — but a government lawyer has informed the Berges that the department is reconsidering their claim.

Tricare representatives told military families that it considers ABA an educational program, not a medical benefit. Because of this, ABA therapy falls under the supplemental benefits program offered by Tricare only to active-duty personnel.

Within the last two years, a host of states has enacted legislation requiring insurance companies to pay for ABA therapy and other autism treatments. Seven states have signed autism insurance bills into law this year alone, according to the autism advocacy group Autism Speaks.

Most state legislation, however, includes age limits and caps on how much insurers are required to cover for ABA therapy and other autism treatments. It often applies only to large group insurance plans.

The federal healthcare bill that passed in March included a provision that will require health plans that sell products in new exchanges to cover ABA therapy and other autism services. Experts said it was not clear whether it will apply to Tricare.

Copyright © 2010, Los Angeles Times

Tuesday, July 13, 2010

For Children With Autism, Oklahoma Is Not the Place to Be

Having autism is tough on children and their families, especially when the state they live in refuses to mandate insurance coverage for autism treatments.

The Rohde family in Oklahoma is particularly frustrated and is moving to Minnesota, a more autism friendly state.

The family says that each year they spend around $40,000 out of pocket on their son Nick's treatment.

They've fought long and hard asking Oklahoma legislators to mandate autism insurance coverage, but with no success.

Oklahoma is one of five states that refuse to pursue autism insurance reform.

The other four states not pursuing reform are North Dakota, Wyoming, Oregon and Utah.

Twenty-one states have enacted reform, and the rest of the country is slowly following suit.

In June, the New York Assembly joined the Senate in passing a bill that requires private health insurance companies to cover the screening, diagnosis and treatment of autism spectrum disorders.

The bill is before New York Governor David Paterson and hopefully will soon be signed into law. New Hampshire has a similar law awaiting passage from their governor.

At a recent press conference in New York, Peter Bell, Autism Speaks' EVP of programs and services, addressed why states need to mandate autism insurance reform. One of his reasons is:

When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is no longer true. Autism is treatable, especially when diagnosed early.

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

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


Click here for the video.

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

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

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

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

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

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

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

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

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

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

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

Sunday, July 11, 2010

Sad farewell

Tulsa World

State fails family of autistic child

By World's Editorial Writers
Published: 7/10/2010 2:21 AM
Last Modified: 7/10/2010 5:28 AM

The family that led efforts to force Oklahoma insurance companies to cover autism is leaving the state.

The emotional and financial toll of raising an autistic son without insurance coverage forced Wayne and Robyne Rohde to take their children to Minnesota, where they will be able to get insurance that covers treatment for their 12-year-old son Nick.

For years, the Rohdes have led families lobbying the Legislature for autism coverage mandates. They scored a partial victory this year when the Legislature agreed to a bill that requires insurance companies to cover the same illnesses for autistic children as they do for children without the condition. Previously, families reported that their autistic children were unable to get insurance coverage for things like asthma in their autistic children.

But the parity bill fell far short of the need for the families. Wayne Rohde said the family's cost of analysts, tutors, therapists and medications for their son is nearly $40,000 a year.

Here's a key point about the Rohdes and other families like them: They didn't want a free ride. They wanted to pay their own way in the same fashion that millions of other American families deal with health costs — through insurance.

But the insurance companies simply refused to cover them.

The cost of an insurance mandate is hotly debated. A legislative study says insured Oklahomans' rates could increase nearly 20 percent under an autism mandate. Proponents of Nick's law say the proposal would save about $1 million in human services costs and insurance rates would increase by less than 1 percent.

Whatever the cost of adding autistic children to the insurance pool, one thing is now obvious: There is another real cost to the state for not mandating coverage. Hard-working, loving families like the Rohdes will leave the state or refuse to come here because the state won't allow them to care for their autistic children in a financially viable way.

Opponents of an autism mandate should not rest easy. The remaining families of autistic children will continue their fight for a mandate. The pressure won't go away until the problem does.

To the Rohdes, we say, God bless you and God bless Nick. We hope that you find the help you need in Minnesota, and we regret that Oklahoma turned its back on you.
By World's Editorial Writers

Read more from this Tulsa World article at

Thursday, July 8, 2010

Insurance reform supporters plan move

Edmond Sun, July 8, 2010

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

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

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

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

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

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

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

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

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

Moving on Up

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

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

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

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

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

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

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

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

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

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

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


Wayne, Robyne, Austin, and Nicholas Rohde

Saturday, June 5, 2010

OU autism pilot program shows success

The signs that Blaine Davis wasn't quite like other toddlers came early. Even more than the fact that he didn't play well with others, he lacked the skill to point to what he wanted.

That inability to express his wants and needs meant that he would follow his mother around and cry in frustration.

"He was in his own world,” said his mother, Jennifer Davis.

"He had no way of communicating with us and he would try to communicate by crying and pushing and shoving, not in a mean way, but trying to show us what he wanted.”

But Oklahoma's Early Foundations researchers identified Blaine's autism-type behaviors and got him started in an early intervention program that Steve Davis said has generated unbelievable progress in his son.

One day after Blaine attended the playgroup at a local church, the teachers said he'd told teacher Seth Kastner that he loved him.

"I'd only heard him say, 'I love you,' one other time, that was to me,” Steve Davis said. "Being a parent of a 3-year-old child and not hearing 'I love you' is incredibly difficult.”

Now, Blaine has learned to point, use sign language and even allows his parents to touch him.

The University of Oklahoma Health Sciences Center's pilot project is designed to identify the autism spectrum disorders in toddlers like Blaine.

Like Blaine, one in every 110 children has been diagnosed with the disorders, according to the Centers for Disease Control and Prevention. Researchers found that autism is being reported at higher rates than ever before.

"It's a pretty significant increase in the last 10 years,” Bonnie McBride, principal investigator for the Early Foundations Project, said during a news conference Wednesday at the center.

Though children are often 2 years old by the time their autism is identified, she said the earlier an autistic child is diagnosed the better the outcome.

About the program

The Autism Workforce Initiative is Oklahoma's response to the needs of children, their families and pediatricians.

The initiative features components such as a physician training program, along with the early intervention program for young children suspected of having an autism spectrum disorder.

Children enrolled in the program receive 17 hours per week of help through activities such as play groups, intensive teaching involving behavioral techniques, weekly home visits and monthly parent education nights.

"It's awesome. It's changed our lives, it really has,” Steve Davis said.

Services are provided through Oklahoma's Early Intervention system and the model site serving roughly 10 families in Oklahoma City is funded using federal dollars through the state Department of Education.

Along with developing an intervention model through its pilot site in Oklahoma City, the project is intended to provide outreach support to other communities statewide. The project also is operating in Cleveland and Canadian counties.

The program is offered free to families of all income levels through SoonerStart, the state's early intervention program for infants and toddlers with disabilities and developmental delays.

For more information on the SoonerStart program, call 522-5167 or go to andservices/dd/ss.

Read more:

Michigan insurers should cover autism, experts tell senators looking into impact on families

May 24, 2010 • The Rossman Group
YPSILANTI, Mich. – Autism experts and parents said today at the first of four public hearings that more Michigan children with autism will go untreated unless Michigan insurers help cover medically proven therapies that families can’t afford on their own.

“It’s heartbreaking to learn your child has autism, but to find out your insurance company won’t cover treatments that would allow your child to live a fuller, more independent life – that creates such despair, and thousands of Michigan families are feeling that right now,” said Pamela Lemerand, director of the Autism Collaborative Center at Eastern Michigan University.

The center was the site of the first of the bipartisan hearings spearheaded by Sens. Randy Richardville, R-Monroe, and Tupac A. Hunter, D-Detroit. The lawmakers want to know more about the impact of the complex neurobiological condition on the families of the 15,000 children in Michigan who have autism. Autism impairs a person’s ability to communicate, learn and relate to others.

Autism affects one in every 110 children and is the fastest-growing developmental disability in the country, according to the U.S. Centers for Disease Control. It can be effectively treated with early, intensive intervention such as speech, occupational and physical therapies, and behavioral health therapy, but treatment can cost $50,000 annually.

“We need to know firsthand how this devastating condition affects Michigan families," Richardville said. “It's important to explore various options that may represent an opportunity to help those in need and be more efficient with public funds.”

Insurance companies generally do not cover autism treatment, so 19 states have updated their insurance laws to cover it.

It is estimated that early diagnosis and intervention could save Michigan taxpayers lifetime costs of $14 billion for the current population of autistic children. The savings reflect avoided costs for supports such as long-term care and special education.

“If diagnosed and treated early, children with autism can make significant gains that affect their independence and family functioning in many ways,” said Dr. Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center. “Making sure insurance companies cover early treatment just makes good fiscal sense.”

But it’s also a social injustice that needs to be addressed, Lord said. “What other medical condition with known, medically proven interventions is routinely denied coverage?"

A recent study found the state of Texas could save up to $771.5 million in special education costs alone within just the first 10 years of passing autism insurance reform legislation. In Michigan the savings could be $3 billion over the entire school lives (age 3-26) of the 15,000 children with autism.

“Without insurance reform, Michigan taxpayers will continue to be saddled with these costs and Michigan children won’t have access to medically proven therapies that can be life-changing for them and their families,” said Lorri Unumb, senior policy advisor and counsel for Autism Speaks, a Washington, D.C.-based advocacy group that has helped win legislative reforms in several states.

Plans are under way for additional hearings in Detroit, Grand Rapids and Lansing.


Contact: Sharon Emery 517-896-7075 (c), 517-487-9320 (o)

Tuesday, May 25, 2010

Call it anything but Autism!

From our friends at Oklahoma Citizen. Click here to access article.

May 24, 2010 - 7:38 pm by ollamok

Parents many times want their disabled child to have a label. Any label will do. Why? So they know what they are dealing with and can start a plan of attack. Or, can finally put a name to what they have faced for so long. They never dreamed that it could force them into being denied basic insurance coverage for an illness or service, but it can.

Please don’t give up. Please continue to fight. There are still ways to get things covered. It takes a lot of endurance but these types of parents to this everyday anyway.

One must first study their insurance plan. What is covered? That is right! Do not look for what is not covered. Read the guide you are given over and over. Become familiar with diagnostic codes. ICD9 coding is used by most insurance companies. Here is a web site that could be of use: The way something is coded is the key to getting insurance to pay for the illness or service.

According to an Occupational Therapist, OT, one specific code not to use is 299.00, which is Autism. The code 783.40 is Developmental Delay, another area that insurance has denied often. The code the OT has received the best payment from is 781.3, Praxis or Motor in Coordination. The code has to relate to a medical need, if insurance is to pay.

Through unique circumstances a teacher noted that my son seemed to have a curved spine. My husband and I thought she was wrong. We finally consulted an Orthopedic Surgeon. This resulted in a prescription for Physical Therapy (PT) services, Social Skills Training and Speech Services. He has Scoliosis. The Doctor wrote the Rx for services based on a need to increase spatial body awareness and the diagnosis of Scoliosis, Asperger’s and Dyssemia. Dyssemia is:

“The term comes from the Greek dys (difficulty) and semia (signal). These difficulties go beyond problems with body language and motor skills ‘A classic set of studies by Albert Mehrabian showed that in face-to-face interactions, 55 percent of the emotional meaning of a message is expressed through facial, postural, and gestural means, and 38 percent of the emotional meaning is transmitted through the tone of voice. Only seven percent of the emotional meaning is actually expressed with word’] Dyssemic persons exhibit difficulties with the acquisition and use of nonverbal cues in interpersonal relationships. Dyssemia represents the social dysfunction aspect of Nonverbal Learning Disorder”

The insurance did pay for PT and the other services were not used at that time. Yet, this was a physical reason to write for these services. This Doctor says he sees Scoliosis in children with Autism a lot. This doesn’t mean to take in all children with Autism to an Orthopedic Surgeon. By all means go through the Primary Care Physician (PCP) first.

What this is saying, is there are reasons other than Autism to bill insurance for services. Insurance will pay for these. One has to look at what insurance will pay for and see if their child has these conditions. Does it seem like a game? Well it just might seem like it. If it does, that means you have a chance of winning. If one does try, there is a 50/50 chance of winning, but if one does not try, the result is a loss.

Do you know what a Carve Out Plan is? Do you know what the Birthday Rule is? Do you know if you insurance company is a PPO or an HMO? One can go to and download a book on understanding insurance. Most states will have guide to Medicaid that tells what is covered .There is another web site that has a guide to understanding private insurance, Knowing these terms will help you when you are navigating the insurance network. A Carve Out Plan will not pay for anything that another plan does not pay for if one has two or more plans. The Birthday Rule is where both parents cover a child, the parents’ birthday that comes first is the primary insurance and the other insurance is secondary. My birthday comes first in the year so if I had insurance then mine would be primary and my husband’s would be the secondary.

Other things to bear in mind besides what to call it, believe are not are the geography of where you live. Some states mandate coverage for Autism. If they do cover Autism one might still want to consider calling it something else. What are the caps these states have put on covering Autism? Some have put it at very low. That means the insurance companies win and you lose. These are just things to consider. Just check on what the dollar amount is.

A New York Times articleA Road Map to Help Parents Deal with Financial Burden of Autism, talks about fighting insurance to pay for Autism and stretching the Autism dollar. Of course one needs to keep copies of all records: Explanations of Benefits, Doctors Receipts and other documents such as denial letters. What the article states about stretching the Autism dollar is if the services one gets at school, such as Occupational Therapy(OT), PT and Speech are good, then one can saves the other dollars to pay for out of pockets expenses not covered by insurance where needed.

Insurance often requires one to go all the way through the process of getting a denial and through the appeals process. Sometimes it helps to talk with the State Insurance office. This is not a guarantee and one may have to sue with a lawyer. Remember getting a lawyer may cost money. Even if one does attempt to sue for coverage it is not a given that one will win and sometimes it is good to know when to quit or give up the process. It may cost too much money to pay a lawyer and loose that money too. Please make the best informed decisions for your family.

Playing the insurance game is no fun. I hope this article has brought some strategy to your side. Paying for Autism is a never ending process. Remember call it anything but Autism. Look for something real that your child has, this should be easy. I pray that I have helped you in some way. Bless you for allowing me to share in your trials and blessings.

Monday, May 10, 2010

Autistic kids receive fair treatment with new bill

Sen. Sean Burrage
May 10, 2010
Pryor Daily Times

OKLAHOMA CITY — Starting Nov. 1, parents of children with autism will have greater protection when it comes to more fair treatment by insurance companies. Senate Bill 2045 was approved on bipartisan votes in the Senate and the House and has been approved by the governor. The measure includes language that will make certain health insurance companies cover the same illnesses and medical treatment for children with autism as they do for children who do not have that diagnosis.

To be clear, we are not talking about covering diagnosis and treatment of autism itself, although I believe this is something the state can and should do. We’re specifically talking about families that have insurance, regularly pay their premiums, but when a medical condition affects a child with autism, the insurance company refuses to pay for treatment of that condition, even though the medical problem has nothing to do with autism.

We’ve had literally dozens of families complain that insurance companies had routinely denied claims filed on behalf of their children for illnesses and maladies

completely unrelated to the diagnosis of autism. According to the families, their claims were denied because Oklahoma does not require health insurance policies to cover the diagnosis and treatment of autism, and most insurers will specifically exclude autism.

Another way to put it is this. Two families have the same insurance policy. Both have sons who play a sport. The boy from the first family is hurt playing baseball. The insurance covers the cost of treatment; end of story. But for the second family, if their child is injured playing baseball, the outcome is different. Their medical claims are denied because their son happens to have been diagnosed with autism - even that had nothing at all to do with the getting hurt while playing baseball. With the passage of SB 2045 and the governor’s signature, this lack of insurance parity will no longer be legal in Oklahoma.

Autism continues to be the fastest growing developmental disability in our nation, with as many as one in 110 children impacted by one of the conditions on the autism disorder spectrum. Science still has not determined the cause of autism, but we do know that early diagnosis and access to appropriate therapy and treatment can mean the difference between night and day in helping these children lead fuller lives.

This is the result of hard work and cooperation. The idea began as a bill by Sen. Jay Paul Gumm of Durant, who has pushed for enactment of “Nick’s Law.” While he hasn’t given up on that effort to require coverage for diagnosis and treatment of autism, he came up with this common sense compromise everyone could support, even those who oppose “Nick’s Law.” He worked with Senate President Pro Tempore Glenn Coffee, who agreed to help get the compromise in a bill.

This is important step - but we have more to do. I still believe our public policy should be stronger and that our state should do a better job of supporting and protecting the rights of families with autistic children, in terms of available services, medical care, and fair treatment by insurance companies.

Thanks again for reading my “Senate Review.” If you have any questions on a
legislative matter, please do not hesitate to contact my Senate office at the Capitol by calling (405) 521-5555 or writing me with your concerns at: Senator Sean Burrage, 2300 North Lincoln Blvd. Rm. 529-B State Capitol Building, Oklahoma City, OK 73105.

I always enjoy hearing from my constituents and consider it an honor to be your voice in the Oklahoma State Senate. May God bless each of you.

Click here to link to the article.

Thursday, May 6, 2010

Mo. Senate passes autism insurance mandate

Associated Press - May 6, 2010 1:14 PM ET

JEFFERSON CITY, Mo. (AP) - Senators have passed what they describe as a compromise bill to require insurance coverage of autism treatment for children.

The legislation would require group insurance policies regulated by the state to cover up to $45,000 annually for behavioral therapy for autistic children through age 18. The mandate would begin Jan. 1.

Senators passed the bill 27-6 Thursday. It now goes back to the House, which had passed a version with lower coverage caps earlier this year.

The annual coverage caps would apply only to "applied behavioral analysis," an intensive therapy that some parents say produces dramatic improvements in their autistic children.

Saturday, April 24, 2010

A time to highlight accomplishments of those dealing and living with autism

Kim Dabney
Special to the Progress
April 24, 2010

CLAREMORE — What do labels such as “American Indian,” “Jewish,” “Jehovah’s Witness,” “disabled” and “Polish” have in common? They describe wonderful groups of people denoting their faith, culture, condition or heritage. These labels also subjected millions to persecution and death.

For the past 30 years, the United States recognizes April as National Autism Awareness month.

A time to highlight the accomplishments made in healing, dealing, and living with autism.

As the headlines roll in this month it appears we are slipping back to fear of the label and the denial of common rights or dignity to those who must bear it.

Recently, in Oklahoma City, a hospital refused admission to Stephen Puckett, a 28 year-old with autism suffering severe seizures. The reason; he is an adult with autism.

These same hospitals take drug addicts, murderers, rapists, mentally ill, black, white, Hispanic, male and female but not autistic adults.

As a parent of an autistic child the message that several hospitals state as ‘policy’ chills me to the bone. Our son Drew has autism and is only eight years away from reaching the legal age of adulthood. How will this ‘policy’ affect him and others like him?

Drew regressed into autism at age 16 months, leaving him in “label limbo” with pediatricians who shrug their shoulders about how to help him and education systems that do not want to teach him.

Health insurance companies that my husband and I paid premiums into for years do not cover Drew’s health and well-being if it is in connection to his autism. Life insurance companies will not write a child rider for him. There is no escaping the label. These acts of exclusion happen almost everywhere.

There are a few standout exceptions: notably, Roosa Elementary school in Claremore.

The teachers, therapists and staff do not measure Drew by his autism label. They see him as a smart, loving little boy who likes to swing, play with rocks and mud, go to the zoo and do math.

His teachers and therapists marvel at how well he is doing. They push him hard to learn how to read, write and count.

They think he has a future and is worthy of an education. They are doing something remarkable in that they have refused to judge him by the label. They see a growing little boy who wants to learn, have friends and play like other children.

What is equally significant are the other children at Roosa, the typically developing ‘normal’ children, his peer group. These children accept Drew, no qualms or hesitations. They quickly learn how to communicate with Drew, who is non-verbal.

They play with Drew and he loves it. Drew’s autism label does not get in the way. What resourceful adults these Roosa Elementary children will turn out to be.

They will be able to work with all type of people, never seeing the differences as the person, but the person behind it all. They will be first-rate communicators, good neighbors, incredible in the work force, already able to get along regardless of the disparity of a less than desired label.

Perhaps that explains what happened to Stephen. His label of autism met up with folks in authority who do not ‘do’ autism.

Possibly, if they had grown up with children in their classroom and playgrounds and learned to see the person, not the label, Stephen would have received care for his seizure and compassion that his autism makes it harder on him to understand what is going on.

Maybe the “universal government health care” that our elected officials are forcing its way to reality will put an end to situations like those that Stephen went through.

Maybe not. England is a civilized country similar to America that has had ‘free health care” since 1948. Does their system treat the person or the label?

A short while ago in England, Mr. and Mrs. Roberts’ 20 year old son, Harry Horne Roberts, was living in a group home.

Harry had autism. His devoted and caring parents took care of him at home until he was an adult. At age 18, they had safety concerns for Harry and moved him to an assisted living facility where they visited him four or five days a week.

A serious medical decision, made without Mr. or Mrs. Roberts’ knowledge or consent, to put the young man on the drug Chlorpromazine ended Harry’s life.

This dangerous anti-psychotic drug can cause brain damage, sudden death, heart failure and is not a proven or approved treatment for autism. Harry died in his sleep this past December. He was very healthy, active but not psychotic. He was simply autistic.

As a parent of a child with autism, Harry’s suspicious death and Stephen’s denial of medical care present horrifying questions. What is going to happen to my child when he is no longer legally a minor?

Parents of children with any disability that continues to affect them as they mature to adults are faced with the gruesome reality that care for their adult children may be denied or taken over by the state. After years of sacrifice, love, devotion, care, and advocating, we may have our adult child deemed unworthy of medical care or even worse, legally killed with ghastly chemical cocktails prescribed by the state.

Autism Awareness month is almost over and the label of autism is still misunderstood. If you know someone with autism or who has an autistic child, take a moment to see the real person. They may have some quirky characteristics. Do not let that distract you from seeing the real live human being that longs to be in your eyes, more than a lousy label.

n Kim Dabney is the parent of a son with autism.

click here to read the article.

Autism law draws advocates' praise

Previously, insurers could deny coverage for unrelated treatments.

By SUSAN HYLTON World Staff Writer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here to read the article.

Bills passed to improve the quality of life for children

An excerpt from the Durant Daily Democrat

Click here to read the entire article.

....The second step forward for children last week was enactment of a bill I amended when it was before the Senate. For years, I have fought to require health insurance to cover the diagnosis and treatment of autism. That bill, known as “Nick’s Law,” has passed the Senate a number of times only to falter in the House of Representatives.

During my time with parents of children with autism, they raised another issue. Some insurers routinely deny claims for children with autism when they pay claims for the same illnesses or injuries suffered by kids who do not have autism.

For parents of children with autism who pay health insurance premiums knowing the insurance will not cover autism, denial of claims not related to autism is like a punch in the gut. The families are paying for this coverage, and they are being denied for no good reason.

The effort to right this wrong began as a stand-alone bill I filed at the beginning of session. While working to get the bill heard in committee, time ran out. After very productive discussions, we struck a bipartisan agreement to move my proposal forward. I amended a bill on the Senate floor to include my original language.

Senators unanimously approved my amendment to Senate Bill 2045, and the bill passed the Legislature without a single “no” vote. It arrived on Governor Henry’s desk last week, and he signed it into law Friday.

While not everything we want to see on the issue of autism, this was a huge step in the right direction. This was such a bipartisan victory for families, the editorial page of one of the state’s largest newspapers wrote: “Passage of Senate Bill 2045 represents one of the Oklahoma Legislature’s finest hours.”

For me, I am thankful Oklahoma is a better state today for our children. And, I am forever grateful to the people of Senate District 6 for allowing me to be a part of the effort to make it so.

Thanks for reading this week’s “Senate Minute.” Have a great week, and may God bless you all.