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