What promise does Ohio hold for this autistic boy?
Parents say a scholarship program may help where Oklahoma falls short
What promise does Ohio hold for autistic boy from Oklahoma?

Comments Comment on this article79

By Michael McNutt
Published: May 30, 2008

Caroline Hall says her family has no choice but to leave Oklahoma because legislators didn't pass a bill requiring insurance companies to cover autism treatments.

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"The house should be ready to put up for sale next week,” she said.

She and her husband, Doug, are moving to Ohio, where their 4 1/2 -year-old-son, Dougie, can take part in a special scholarship program for autistic children, she said.

Caroline Hall, who works in the physics department at the University of Oklahoma, was one of more than 30 parents who went to the state Capitol for several weeks to encourage legislators to pass the bill known as Nick's Law. The measure passed in the Senate, but died in the House.

"It's been more than a frustration; it's been an outrage,” she said.

Hall said she appreciates the efforts of Sen. Jay Paul Gumm, D-Durant, who wrote Nick's Law and got it passed in the Senate.

Opponents cite possible costs
Rep. Ron Peterson, R-Broken Arrow, refused to let the measure be taken up in his House committee. Peterson, who announced this week he's not seeking re-election, twice refused parents of autistic children to speak and once prevented Democratic members on the committee from bringing up the measure.

House Speaker Chris Benge, R-Tulsa, did not let the measure advance to the full House in the last days of the session, which ended last week.

House Republicans are concerned insurers would pass increased costs on to policyholders, which might make insurance unaffordable.

Benge is forming a task force to study health care costs in the state, including what effect adding autism coverage would have on insurance policyholders in Oklahoma. Other legislators are looking at studies involving autism.

Wayne Rohde, whose son, Nick, has autism and for whom Nick's Law is named, said he and other parents of autistic children plan to attend legislative task force meetings dealing with autism.

"We're looking forward to those studies basically to prove that what we've been asking for is correct,” he said. "Obviously, this is going to be a major, major issue for the House Republicans to address.”

Rohde, of Edmond, said he is aware of about a dozen Oklahoma families who are considering moving to states that require insurance companies to provide coverage for autism. He estimates about 6,000 children in Oklahoma suffer from autism.

"We're going to stay and win,” he said. "It's unfortunate we have to wait another year. There's going to be several hundred kids that are going to be basically locked into autism because they were unable to receive services and treatment because of this delay.”

Time is critical, mother says
Hall said her family has no choice.

"It's going to be at least another year before this gets considered and then maybe another six months to a year after that before it's implemented,” she said. "Dougie doesn't have time.

"When you're looking at any kind of neurological disorder, you have to think in terms of what's best for the child in critical phases,” she said.

"Those neural connections are forming at the most rapid rate when a child is between zero and 6 years old. … This golden triangle of when my son's brain is the most malleable will soon be over. He doesn't have time — he needs these interventions now to be functional.”

Hall said she and her husband, who is a critical care nurse, are fortunate that they have "portable” jobs. She will continue to work on a project she's been involved in at OU — she'll be paid by one of the grant partners instead of being on the university's payroll — and her husband should have no problem finding a job in Cincinnati, where the family is relocating, she said.

"For every family like us, there are probably 30 to 40 Oklahoma families who could never dream of picking up and leaving.”

Private school has helped Dougie
Hall said her family has drained nearly all its savings to send her son to a private school for treatment. Their son has flourished at the Rubicon School and Learning Center in Edmond since he started going there in August.

"It's a wonderful school,” she said. "They have done a wonderful job with him. We've seen a turnaround; it's not money down a rat hole. It has absolutely changed his life.”

Before he started the school, Dougie knew about 10 words and was not toilet-trained, she said. Dougie now knows how to use the toilet and "his vocabulary is close to 500 words and he is saying small sentences using a subject, a verb and an object,” Hall said.

He has received physical and occupational therapy at the school and some behavioral treatment as well as learning to develop social skills, she said.

"It's been quite expensive for us, and there's no help,” Hall said

In Ohio, the state provides up to $20,000 a year for either private schools or autism treatment, she said.

The family has private insurance, but it doesn't cover behavioral therapy for autistic children, she said. Her policy does cover speech, language and occupational therapy, but it's limited to 20 visits a year.

"That doesn't begin to cover what an autistic child needs,” Hall said.

Dougie, who was diagnosed as having autism about two years ago, goes to school five days a week and receives the equivalent of 12 visits a week, she said.


 


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Kristin-Thank you so much for supporting Nick's Law. If you would like to help, please contact your state representative and senator and ask him/her if they support Nick's Law..every state legislator knows about Nick's Law. Please try to spread the word about this issue. These little children deserve to be covered under insurance in the same manner they would if they had diabetes, aids or cancer. Autism is more prevelant than all three of these diseases combined! Thank you again for taking time to read these posts. Robyne, Mommy to Nicholas (Nick's Law)
Robyne, Edmond - Jun 2, 2008 at 7:04 pm
Thanks, Kristin. For every mean spirited comment, we get about 100 positive ones. This is why we are choosing to stay in Oklahoma and fight for Nick's Law. To stay abreast of what we are continuing to do to keep Nick's Law alive throughout the summer, through the elections and the beginning of 2009's legislative session go to: http://nickslawok.blogspot.com/
Robyne, Edmond - Jun 2, 2008 at 4:49 pm
Health Care is out of control. Absolutely EVERYTHING should be covered. Robyne: Good job mama! You are doing what's right for your son. Your son's quality of life and future are well worth it all. Until this forum, I was not aware of the problems surrounding the diagnosis of autism and obtaining adequate care. I will now be glad to help in any way that I can. We all need to get behind healthcare reform. It should be more affordable, fair and accessable - or better yet, get rid of it all together and move to the free market system where Doctor's and Hospitals compete for our business and we pay them directly.
Kristin, Mustang - Jun 2, 2008 at 3:13 pm
Thanks, Floyd-Appreciate your prayers. The reality is when these children age out (18) and have not had the opportunity of treatment, they will become wards of the state. 80% of these children are under the age of 16, so it will be a couple of years before we see the hit to social services. The sad thing about social services is that have no idea even now how to work with these children. All they will be able to do is warehouse them. It is all so very sad, especially when these children could have been helped. I know Walter is mean-spirited, saying we (parents of children with autism) are trying to scam the public. We don't want our children on welfare, most of these children don't qualify for social security benefits, so it comes down to, do we pay the light bill or our child's speech therapist? Right now, before we pay anyone, we pay our behavioral therapist, which nearly takes my entire paycheck. Anyway, thank you again. We are continuing with our agenda, even though no one is in session. My husband and others are continuing to meet with various legislators and organizations including the insurance companies on behalf of the 1000's of children in this state that require coverage. Take care.
Robyne, Edmond - Jun 2, 2008 at 2:21 pm
meant to say "missed my point"
Floyd R, Purtle - Jun 2, 2008 at 11:08 am
Robyn, you somewhat make my point. You also didn't address the Ohio method of helping families with children with autism. Oklahoma's not in a position to be out front on this issue. Mr. Peterson's actions seem far from cowardly..he could do the politically popular thing, act on emotion, and pretend like some others that adding millions more to the insurance industry won't cause premiums to rise. That would be a miracle. //At the same time, I sincerely hope that something is done in the next legislative session. Or we can dispense with this insanely ad hoc system of insurance coverage mandates by state. You shouldn't be bearing all the burden by yourselves. It is just logical that if you're paying for health insurance and your child has a health issue requiring treatment that you would be covered for at least the minimum level of treatment giving your son a chance to be productive and happy. After reading your posts, you and parents in your position are high on my prayer list. Walter and several others here are showing rather wide mean streaks. Let's pray you are granted some gentleness and compassion.
Floyd R, Purtle - Jun 2, 2008 at 10:00 am
Robyne This Walter Guy is very knowledgable on the subject and on to your scam of trying to get the government to pay for YOUR responsibilities. Stop trying to scam the public.
Walter, Edmond - Jun 2, 2008 at 8:20 am
Bridgett, Paul and others. This Walter guy is so very ignorant of this topic. Let's not wast anymore time on him. Everyone have a great day!
Robyne, Edmond - Jun 2, 2008 at 7:49 am
Just like all the rest of the liberals who wish society to assume the responsibility for their ALL problems Robyne and Bridgett both think that all society needs is an education to understand their personal problems. In other words the general populace is STUPID. The general populace is not STUPID in fact we are smart enough to see thru your scams. Robyne, IF and it is a big IF you are sending the amount of money you CLAIM to be spending on your son, What would you do if the government broadened its socialistic programs and included your son in its treatment program? You would spend the $50-$75000 you claim you currently spend on your sons care, on things to make your life more luxurious. Well I don't even get $50,000 per year in total income. You are telling me, YOU want to tax ME to pay for treatments you should have provided for, before your son developed autism. If my taxes are raised to pay your expenses, I will live in greater austerity then I am now but you will have that $50-$70000 per year to spend as you see fit on your self indulgences Don’t keep repeating the same tired line that insurance was not available. Insurance can be purchased for anything. They insured MM’s b00bs, They insured B Grables Legs. Anything you want to insure can be insured. You CHOSE not to purchase insurance. You also keep trying to confuse the issue of insurance by comparing a prepaid treatment program for an existing condition (according to you somewhere in the neighborhood of $4000 a month) to actual insurance (which I guess would have been less than $50 a month) which is for future unknowns. You gambled that your son would be perfect, you lost. Now you have to pay for that gamble, Quit trying to foist your problems on society. If you were destitute it MIGHT be another problem but you are affluent and can afford to provide for your own families health care.
Walter, Edmond - Jun 2, 2008 at 6:35 am
you can thank randy terrill and his merry band of thugs for not passing this bill, but passing a racist antimexican bill. we all know mexican kids are more important than ours.sigh.
Randy, Moore - Jun 1, 2008 at 6:24 pm
To Brock: Wayne, my husband suggested you need to get out from behind your computer and start making a living out there in Beaver, Oklahoma. Besides, folks, this is a cut/paste from a previous post. Some independent thought might be nice. Oh, and the offer Wayne made to you to speak personally about this issue still stands. Obviously, you don't see the need in actually speaking to someone who knows what the impact would be to our state and the insurance companies. Why don't you get out of your little town and come up to the Capitol sometime and gain an education or better yet spend some time with a family or volunteer with organizations who work with autistic children. Too much work, isn't it? It's better just to spout off about a topic you know little about.
Robyne, Edmond - Jun 1, 2008 at 6:01 pm
Mandating $31 million dollars per year from Oklahoma insurance companines and its citizens is nothing more than socialism. It's completely backwards from our American free market. Capitalism is the solutiion that would lead to more competition and choices for the consumer which always leads to a better and cheaper product. If we are strapped with this forced expenditure(tax), as it is with most mandates and regulations, it will actually worsen the problem of health care costs and consumer choice.
Brock, Beaver - Jun 1, 2008 at 1:10 pm
Wow. I kept thinking Robyne would help this poor soul gain some understanding. Obviously Walter et al don't have the capacity to broaden their knowledge base. Hope he keeps his stance when he learns his learning disability isn't covered.
I'll try to explain one more time--VERY SIMPLY. If ANY therapy is submitted to an insurance company and it claims autism as the reason for therapy...it is DENIED. Speech and OT are only 2 therapies that assist in recovery of our children. They need ABA or other forms of behavioral therapy, none of which are covered because they are directly related to autism. They also need much medical coverage...if a diagnosis code of autism is used...it is DENIED. There is NO coverage for our sick kids. Most of which will rely on YOUR TAXPAYER dollars for care later in life without treatment.
We have paid into BCBS for 14 years for our family of 5. We never use our insurance. We are a healthy family. After our child was diagnosed with autism...we were denied any help. This diagnosis could just have easily been cancer or diabetes. No riders for those!!! And we don't want government hand outs. This is our point exactly...make the insurance companies do what they are supposed to do...provide insurance to spread the risk of loss. It is so sad that the state's politicians are putting insurance profits above the care of hundreds of children in the state. And even more sad that some in the public remain as poorly educated as Walter.
bridgett, edmond - Jun 1, 2008 at 12:47 pm
To all reading this post, Please ignore Walter and the others who do not understand. They think that autism is some type of predictable disorder and we should have an insurance rider for. They are the ignorant and all they want to do is stir up the pot. If they were anything that they say they represent, they would provide some solutions that are real. Saying purchasing a rider is not a solution since it does not exist and will not work.

To Walter, you logic would mean that insurance should not cover you if you are the victim of a car accident unless you buy the rider to cover that. Superior ignorance instead of caring for your fellow man.

Robyne, Edmond - Jun 1, 2008 at 12:03 pm
paul, yukon - I don’t feel that the individual families who are harmed by a hailstorm, tornado, flood, fire or any other catastrophe have any right to demand that the government provide them aid. I think it is permissible to assist them in getting them out of harms way but the aid being provided to rebuild after the emergency is past is another form of welfare. I can see the larger governments providing aid to local governments to rebuild public facilities but rebuilding the individuals private property is the responsibility of the individual. If your home individually burns down and you are left with nothing, most likely the government will give you NO AID what so ever. But if your home is part of a fire that destroys a whole neighborhood, the government will declare a disaster area and provide immense amounts of aid to rebuild private property. WHY ? ? ? The fire that destroyed your individual home is just as much a disaster to you and has left you just as destitute as individuals who’s homes were destroyed by the fire that destroyed a whole neighborhood. The government should not be in the business of providing insurance for fools after the fact of a disaster.
Walter, Edmond - Jun 1, 2008 at 11:55 am
Behavioral therapy ($3000/month-insurance does not pay for this), lab tests ($100-$500/month depending on what we are testing for that particular month to insure the medication we are administering is the appropriate dosage-insurance does not pay for this), supplements/medications - out of pocket costs $495/month, OT/PT, for 20 visits pays 70% of what Aetna considers customary of $520/month for 3 months, for 9 months we pay $520/month when insurance stops paying). Every 2 weeks we travel to Dallas for treatments-- costs range from $250-$500 per visit, including travel-insurance pays 20%-50% of a $225 office visit and none for the medication which costs $120. So Walter, get out your calculator and do the math. By the way, we have to reach a $3000 deductible before insurance starts paying anything for our son. If all of this and more is selfish, then I'm proud to be a very selfish mother. We will do whatever it takes to get our little boy back. Thanks Walter for your insightful comments. I hope and pray this disease never strikes your family. Take care.
Robyne, Edmond - Jun 1, 2008 at 11:54 am
Robyne, Edmond - Your first sentence says that “insurance coverage for autism does not exist in Oklahoma”. Your second sentence says that “ insuranece (SIC) will pay for 20 visits of OT and SLP”. So insurance is available only you don’t have it to the extent to cover all of jrs treatments and you want the government to subsidize YOUR SELFISH BEHAVIOR in not providing the proper coverage for your family. By petitioning the state to pay for the care of your child you are perpetuating and promoting socialism. If you were truly interested in child welfare you would be promoting options on insurance that would provide extensions to the kind of care you are suggesting is needed for your son to be purchased BEFORE the liability occurs. I see no point to discussing this off line with either you or your husband. You are bent on trying to make the public responsible for the care of your child and I strongly feel that this is your responsibility and you have neglected your responsibilities..
You said, “My son sees his OT and SLP 2 times a week” If you are telling the truth (which I doubt) The $4000 a month you supposedly spend equals $1000 a week or $500 a visit. Gee I’d like to get that kind of pay. If AETNA or BCBS offers coverage at the cost of $4000 a month it is because the purchaser is trying to purchase coverage AFTER the event has inflicted the damage. The whole idea of insurance is to purchase it before the claim occurs not after liability is established.
Walter, Edmond - Jun 1, 2008 at 11:39 am
Thanks, Paul. My husband says the same thing. We are still in Dallas, after having taken Nick to have his 2 week treatment and we are beginning the drive back (with gas, lodging, missing work, and the doctor visit that insurance pays about 20% of because of the way our physician codes this treatment), the cost to come down here every 2 weeks is about $500.00. The good news is we may have a physician in Oklahoma that will start providing these treatments. He is a wonderful, courageous man and has gone from knowing very little about treating our children to being one of only two physicians I trust in Oklahoma to help with our son's treatment plan. Yes, Oklahoma is so backward in so many things. We recently rated the absolute last in child healthcare in the US. No wonder with some of the politicians we have at the Capitol. Parents like us who have paid 10's of 1000's of dollars into the most expensive healthcare coverage and never really had to use it, get denied when our child was diagnosed. But you know all of this. Our story isn't unique. There are 1000's of families in our state that could never provide what we are providing for our son or even know what to do. If it weren't for our family helping and using up all of our retirement, we wouldn't be able to do what we can for our son. There are so few physicians in our state who can even spot the early signs of autism (Nick was diagnosed at 4), that the parents have to become the experts. When Nick's Law does pass, it will become an economic engine, bringing qualified autism specialists to our state. One of the things we did get passed was a BCBA program so by the time Nick's Law is passed, we will have our first graduating class of Board Certified Behavior Analysts to begin working with our children and their services will be paid for by insurance. We will never give up. We know there are more people like you in our state than some of those who posted on this article. Take care, Paul and thank you for your support.Bless you!
Robyne, Edmond - Jun 1, 2008 at 11:37 am
Robyne..trying to talk to a lot of these illiterates is worse than talking to a brick wall, or the fence out back, or the curb..or whatever. Fact of the matter is, it's because of complacency, laziness and a total lack of understanding that these people post in the manner in which they do, I can understand why the state is in the poor shape it's in just by reading the posts of some of these individuals...
paul, yukon - Jun 1, 2008 at 9:48 am
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Insurance for autism coverage does not exist. Even if we wanted to purchase it, in Oklahoma, it SIMPLY DOES NOT EXIST, PERIOD.
Robyne, Edmond - Jun 1, 2008 at 9:26 am
"Robyne, Edmond You can buy insurance for anything, YOU have to be willing to pay the price that the insurer wants. You are just begging your parental resonsibilities by claiming that insurance is not available. It is available you just put your priorities in your own selfish interests/luxuries rather than provide for your family and then are crying oor mouth to get others to pay for your ommisions. It is not the responsibility of society to pay for your exentricies and the mishaps that may befall you and or members of your family. Grow up and take care responsibility for yourself and your family.
Walter, Edmond - May 31, 2008 10:08 PM"....So then Walter, I guess that all the people who tried to get State/Federal aid during this last little pittance of an ice storm, and the ones who cried that they needed the relief because they didn't buy insurance for protection are in the same boat? How many people on here cried about the lack of aid? How about those people in Picher that are still waiting on the Feds to bail them out, how about all the people who are looking for help from the government after a big tornado comes through? Why don't they have insurance? Why aren't they prepared for those scenarios?? Myself, I was prepared for the ice storm, had my generator all ready to go and because of it, I didn't have any need for looking for a handout. If you were affected by the ice storm, can you say the same?
paul, yukon - Jun 1, 2008 at 6:31 am
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Walter: Insurance coverage for autism does not exist in Oklahoma. Autism coverage exists in 18 states only. As a last ditch effort to save their reputation, Peterson, Benge, Blackwell and Piatt convinced BC/BS to offer a rider. BC/BS hasn't even created this rider. It would have to be developed. As I said, insuranece will pay for 20 visits of OT and SLP. My son sees his OT and SLP 2 times a week. He uses up these visits in less than 3 months. There is no coverage for behavorial therapy unless I work for the military. The insurance coverage provided by the military covers behavorial therapy. I'm too old to join the military as is my husband. Coverage for behavioral therapy is so new in some states, a CPT code has yet to be developed by the industry so it is coded as 'other therapy'. Walter, sadly you know very little about insurance coverage for autism. Even if BC/BS developed a rider that wasn't so expensive, it wouldn't be worth purchasing, I don't have BC/BS, I have Aetna. I would end up paying BC/BS for some rider that would probably equal the $4000/month we spend now on our son. I'll make the same offer to you, if you would like to discuss your comments off-line with my husband who is much more knowledgeable than I, please email him at autismadvocate@cox.net. He will be happy to call and visit with you so that you actually understand the realities 1000's of families live with on a daily basis in our state. It is so very sad people like you still exist. Quite possibly, you are just trying to keep the topic active and you may not be as heartless and selfish as you are trying to make yourself out to be. If you are serious, thank God every day you or your family have not been touched by this disease. Presently one out of every 94 boys will be diagnosed with this disease. Walter, what goes around comes around. No child deserves his life taken away from him. Not even a child in your family. Robyne Rohde, Mommy to Nicholas, (Nick's Law)
Robyne, Edmond - Jun 1, 2008 at 12:39 am
I work with children with autism, and I feel it is a disgrace that insurance companies don't recognize that autism deserves to be covered. I see the dilemma the parents face and the needed services that the children cannot receive because the services are too expensive. I wish that the legislators could walk a mile in the parent's shoes and see if it changes anything.
Lisa, Norman - May 31, 2008 at 11:02 pm
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Robyne, Edmond You can buy insurance for anything, YOU have to be willing to pay the price that the insurer wants. You are just begging your parental resonsibilities by claiming that insurance is not available. It is available you just put your priorities in your own selfish interests/luxuries rather than provide for your family and then are crying oor mouth to get others to pay for your ommisions. It is not the responsibility of society to pay for your exentricies and the mishaps that may befall you and or members of your family. Grow up and take care responsibility for yourself and your family.



Walter, Edmond - May 31, 2008 at 10:08 pm
Yes, Paul I know...it is just another excuse. We've heard everything over the past several months, nothing really suprises us. While I don't pretend to know everything that took place at the Capitol or have the knowledge my husband does about the other states that have enacted the same laws with either no rise in premium rates or less than 1% rise in premiums, I can tell you, my husband spent 2 years researching autism insurance and the impact it would make to our state. He also is much more tactful than I am...what can I say, I'm a mommy and I pretty much get in people's faces when it comes to my son. You should see some of the letters and emails we received...everything from it was our fault our son is autistic to things like ....we are lazy and want someone else to take care of him. We spend over $40k a year on that sweet child and he nearly said a complete sentence the other day....You and 1000's of families in our state would understand what a huge milestone that is. Others, wouldn't understand and I think we know who they are. The same people who don't really understand the issues at stake. Take care.
Robyne, Edmond - May 31, 2008 at 8:47 pm

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