Thursday, January 27, 2011

Minneapolis - City Pages IEIBT could cure autism

But HealthPartners and other insurance companies won't pay for it

By Nick Pinto Wednesday, Jan 26 2011

Tracy Reid was bawling uncontrollably, and the medical specialist sitting across from her couldn't understand why. She had just told Reid that her five-year-old son Max scored normally on a battery of mental tests and had an average IQ. What was there to cry about?

Max Reid, now five, was diagnosed with autism in 2008

Tracy Reid used to fear that the kiss in this photo would be the only one she'd ever get from her son. Thanks to Max's therapy, she no longer worries that he'll need a lifetime of institutional care.

Through her tears, Reid tried to explain: The assessment of Max brought to a close three years in which the single mother thought her son would never be normal, would never be able to go to college, would never be able to take care of himself.

Reid hadn't let herself cry since Max was diagnosed with autism. He showed many of the obvious signs: He didn't like to be close to other people, wouldn't make eye contact. He was slow to learn to talk, and fell behind the curve in picking up the skills most young children learn. He threw violent tantrums.

On her dresser at home, Reid kept a picture of what would probably be the only kiss Max would ever give her. Captured against a photography studio backdrop, the shot shows Max lunging at his mother in a bizarre, open-mouthed embrace.

Shortly after the picture was taken, Max became so uncomfortable with physical contact that kisses were unimaginable.

When Max was diagnosed with autism in 2008, the outlook wasn't good. His IQ classified him as mentally retarded. On the Global Areas of Functioning scale, a way of measuring how well you fit into society, he scored an abysmal 45. Reid wouldn't admit it to herself at the time, and even now feels ashamed to say so, but as the scope of Max's problems became clear, she felt like she was grieving the loss of her son.

Still, she wasn't ready to give up on him. She had health insurance through her work as a lawyer at the Legal Aid Society, and set about looking for treatments that could help Max. Eventually, she found the Minnesota Early Autism Project, which has had good results with a form of treatment called Intensive Early Intervention Behavior Therapy, or IEIBT.

Click the title to read the entire article

Local family seeks out autism help

The Edmond Sun
January 26, 2011
James Coburn

EDMOND — EDITOR’S NOTE: This is the first in a two-part series. In Friday’s Edition of The Edmond Sun will be coverage of state Rep. Randy Grau’s efforts to include autism coverage in the state’s high risk insurance pool.

People don’t fully understand the reality of an insurance company saying, “‘We’re not going to help you with your kid,’” Eric Littleton said.

All of the wall glass in Littleton’s Edmond home has been removed as testament to his little boy’s shattered life in the spectrum of autism. Anything that could be broken has been removed.

Solomon was 5 years old in 2008 when he contracted the rare neurological disease Landau-Kleffner syndrome. Eric and his wife Marci saw their twin son’s normal life deteriorate with a loss of motor skills.

Solomon began periods of sweating and crying or screaming for no reason, Marci said. He began having panic attacks that appeared like little tantrums.

“These panic attacks — he would actually take off running across the house banging into walls,” Eric said. “His heart rate would spike, his face would get beat red and his eyes would start bulging. He would start screaming at the top of his lungs.”

Soon Solomon could no longer feed himself, toilet or dress himself. His parents, twin brother Isaac and younger sister Grace appeared as strangers.

“In June of 2009 Solomon spoke his last words,” Eric said.

Today his panic attacks have stopped. Solomon has regained some ability to recognize his parents but remains unable to speak or perform tasks most children his age take for granted. With soft brown hair and big blue eyes, Solomon looks at you quickly before turning away.

Autism is a developmental disability that typically appears in children before age 3, according to the Autism Society of America. A complex neurobiological disorder, it impacts areas of the brain responsible for social interaction and communication skills.

One in 150 people has autism with one in every 100 boys affected, according to the Centers of Disease Control. Autism is a quiet epidemic growing at a rate of 10-17 percent per year, according to the U.S. Department of Education. Eighty percent of these children are under the age of 14.

Solomon’s care involves a specialized multidisciplinary approach for applied behavioral analysis, occupational therapy, physical therapy and speech therapy.

The Littletons take Solomon to a clinic in Wichita, Kan., for therapy at the Erin is Hope clinic. The board of directors of Erin is Hope announced recently it would like to bring a satellite campus to Edmond for children on the autism spectrum.

“We’re looking for sponsors of this project to help bring Erin’s Hope here,” Littleton said.

Eric said he will accept any type of help possible for Solomon. His son’s early therapeutic intervention is slowly improving his life. But Solomon’s out-of-pocket cost for his 35-40-hour a week therapy costs the Littletons between $5,000 to $7,000 a month.

The Littleton’s have exhausted their savings and earnings, broke without health insurance because their insurance company does not cover Solomon’s therapy, said Eric, owner of Littleton and Associates, a Realty company.

“For some reason there seems to be a disconnect and there’s not a moral outrage about this,” Eric said. “If you take the four leading pediatric diseases in America today, your child is more likely to be diagnosed with autism.”

In its second day of session, it took the House Economic Development Committee less than three hours in 2009 to kill any hope that Nick’s Law would be voted on by the House. Parents of children living with autism appeared disheartened while leaving the Capitol building that day.

Nick’s Law would have provided insurance coverage for the early diagnosis testing of autism and medications until the child becomes 21 years of age. A financial cap would have covered $50,000 of behavioral therapy per year without lifetime caps in the House plan.

State Rep. Mike Brown, D-Tahlequah, has filed HB 1624 to bring Nick’s Law to a vote of the people. With a large favorable response from a SoonerPoll last year showing 79.5 percent of all Oklahomans favoring passing of this measure.

A state actuarial report determined that Nick’s Law could raise insurance premiums from 7.8 percent to 19.8 percent.

In 2007, the Council for Affordable Health Insurance, a research and advocacy association of insurance carriers, reported insurance mandates regarding autism will have little impact on the cost of health insurance premiums for consumers. The report assessed the incremental cost of state-mandated benefits for autism in 10 states would be less than 1 percent.

The Oklahoma State Education Employees Group Insurance Board announced its own study revealed that Nick’s law would have 1 percent or less impact on claims.

“I told all the lawmakers I’ve met with I’m not wanting to play a zero-sum game where it’s my way or the highway,” Littleton said. “I think most of the families in our situation feel the same way. We have real strong opinions about what’s happened to our families.

“We think insurance companies should be required to pay. But ultimately, I’ve told people this before that my son is sick. He needs help and I don’t have the luxury of standing on principle.”

FOR MORE information about Solomon Littleton and Landau-Kleffner syndrome, visit

Saturday, January 22, 2011

Rep Mike Brown introduces HB 1624 Vote of the People for Nick's Law

Fox 25 News Oklahoma City
Jan 21, 2011

Oklahoma City - Rep Mike Brown has filed HB 1624 which will allow the voters of Oklahoma to have the final say on Nick's Law if passed by the state legislature.

Click here to view the video.

Thursday, January 20, 2011

Shelley Hendrix Reynolds: Oregon First State to Introduce Autism Insurance Reform in 2011

And we're off!

It's easy to tell the first Monday back after the New Year in the Government Relations department at Autism Speaks. It's full of sparks as rockets start taking off in every possible angle in the race to introduce autism insurance reform legislation in the states. States spend all fall hammering out policy details, knitting coalitions and growing their grassroots advocates and then BANG! It's off to the races. This mad pace continues throughout the first half of the year in the scramble to see whose states will achieve the objective this spring legislative session.

This January, Oregon entered the fray as the first state of 2011 to introduce autism insurance reform legislation with both a House and Senate version of the bill. Oregon has a legislative session that only meets during odd years. The team of volunteers in 2009 worked very hard but we just didn't reach this objective. We know more now. We are armed with more data and more states have enacted legislation. Oregon's volunteer leaders have spent time cultivating that fresh ground and sowing the seeds necessary for success.

Their time is now.
When you look at our map of the United States you see a swath of green across the nation utilized to signify the 23 states that have passed this legislation in the heartland, along the Gulf Coast and up the Eastern Seabord. But the west coast has remained unphased. All children with autism need appropriate health care coverage.

How is it possible that our nation has an entire coast where no coverage exists for our children to access the treatment and therapy they need?

2011 is the year to resolve that injustice. And Oregon Autism Advocates, I hope you will get involved and change your children's destinies.

Martin Luther King, Jr. once said, "Change does not roll in on the wheels of inevitability, but comes through continuous struggle."

With Martin Luther King, Jr. day this past Monday, if you live in a state that has not yet turned green, listen to his words and let that motivate you. Do not give up. Do not sit quietly and depend on others to do this hard work for you. Roll up your sleeves, get busy and get it done. It is worth the struggle.

Yesterday, I spoke with a parent from a state whose law was recently implemented. Their child is severely affected by autism -- and is a teenager. Their family had lost hope. With the advent of the child's new ABA therapy program, because they have access to this treatment, he is now learning independent skills. He is making small meals for himself. He is doing his laundry. He can perform chores around the house. He is contributing to the family unit and because he is more engaged it has changed the dynamic of the family's life and his. These laws are changing lives. They can change yours.

If you live in one of the 27 states that have not passed autism insurance reform and want to get involved to change than visit and sign up today.

Good luck, Oregon. We are rooting for you!

Michigan Lawmakers discuss autism insurance coverage

Jan 20, 2011

LANSING (AP) -- Michigan lawmakers are renewing efforts to require the offering of insurance coverage for certain autism treatments.

Bills were introduced this week in the state Senate. Democratic Sen. Tupac Hunter of Detroit said Thursday the insurance coverage is needed to help families that can't afford the costs of certain autism treatments for their children.

More than 20 other states have similar laws, but the Michigan measure is opposed by business and insurance groups that say mandating coverage would raise the cost of employer-sponsored health insurance.

Supporters of the measure say it's an issue of fairness and that it would save Michigan money in the long run.

The proposal to require autism insurance coverage stalled in the Senate last year. Bills are being reintroduced for the 2011-12 legislative session.

(Copyright ©2011 by The Associated Press. All Rights Reserved.)

Virginia Autism Project pushes for insurance reform

VAP taking two bills to the State Senate

January 17, 2011|By Bob Grebe | Reporter

The Virginia Autism Project is hoping the General Assembly will take up Autism insurance reform.

The VAP website lists two bills the group is supporting this year. SB 1061 - Coverage for Autism Spectrum Disorder; relating to the state employee health benefit plan. This bill only covers state employees. SB 1062 - Relating to health insurance coverage for Autism Spectrum Disorder. This bill excludes state employees.

According to the VAP there are specific reason for the separate bills:

"1. Several legislators last year were concerned that our bill excluded state employees. 2. If state employees are included, then the bill has a fiscal impact for the state budget and we have been told, nothing will pass that costs the state money. 3. SB 1062 does not have a fiscal impact for the state and if the legislators want to ensure coverage for state employees, then we have a bill that will do that and they can support SB 1061 without endangering SB 1062 by giving it a state budget impact."

Lavada Robertson of the Virginia Autism Project is hoping meaningful insurance reform will pass this year.

"We have to start somewhere and this is it," said Robertson. "The Autism community needs to come together to get this accomplished."

VAP officials say this approach is a good first step for establishing the costs of autism treatment to the insurance industry.

According to the VAP, Texas passed similar legislation in 2007. The group is hoping everyone will get involved in the process.

"Autism affects 1 in 110 children and is growing rapidly," said Robertson. "We ask that you call and email your Delegate and State Senator and ask them for a favor, to co-patron the Autism insurance bills introduced by Senator Janet Howell."

W. Virigina Flash Mob Raises Autism Awareness

Click Here to see the video.

CHARLESTON, W.Va. (WSAZ) -- As people headed into the Capital Classic Wednesday night, they probably noticed something was a little different this year.

A large group of people suddenly came together to speak out about an issue affecting thousands of families.

They're trying to get better health coverage to help kids living with autism in West Virginia.

Sonja Almonte says she sang a rendition of "Lean on Me," along with dozens of other people "because my first-born child was diagnosed at a year-and-a-half."

"My son, my 8-year-old son Logan, was diagnosed with autism when he was three years old," says Del. Denise Campbell, D-Randolph.

They're among thousands affected in many different ways. For some people diagnosed with autism, joining in the chorus isn't even possible.

There are treatments available, but they come at a steep price.

"We actually gave up our dream home to be able to provide services for our child," says Earline Anglin. "And, we're so thankful that we did because he's done very well."

Del. Mark Hunt, D-Kanawha, has a child living with autism.

According to the Centers for Disease Control, one out of 110 kids has an autism spectrum disorder.

Hunt says, "We're in the middle of an epidemic here. And the problem is not so much the price now, but what's it going to cost to take care of these people when they reach adulthood?"

He's pushing for a bill that would require insurance companies to cover people with autism.

Sometimes, those treatments can cost tens of thousands of dollars a year.

"It's embarrassing that 35 or 40 other states, most of them bankrupt have already had the foresight to pass this bill. And, I think we just feel like there's a need to do it now," Hunt says.

Hunt says he expects a bill to be introduced to the Legislature as early as Thursday.