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 This material may not be published, broadcast, rewritten or redistributed.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.”