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