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

OKLAHOMA CITY ---

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.

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 http://www.tulsaworld.com/opinion/article.aspx?subjectid=61&articleid=20100710_61_A18_Thefam22925

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.

Sincerely,

Wayne, Robyne, Austin, and Nicholas Rohde

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 www.okdhs.org/programs andservices/dd/ss.



Read more: http://www.newsok.com/article/3465628?searched=autism&custom_click=search#ixzz0q2FKDK1s

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.

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

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