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?

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 7:04 PM
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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 4:49 PM
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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 3:13 PM
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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 2:21 PM
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meant to say "missed my point"
Floyd R, Purtle - Jun 2, 2008 11:08 AM
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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 10:00 AM
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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 8:20 AM
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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 7:49 AM
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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 6:35 AM
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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 6:24 PM
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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 6:01 PM
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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 1:10 PM
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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 12:47 PM
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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 12:03 PM
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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 11:55 AM
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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 11:54 AM
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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 11:39 AM
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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 11:37 AM
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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 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 9:26 AM
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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 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 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 12:39 AM
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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 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 10:08 PM
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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 8:47 PM
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Simple way to keep these(or any other for that matter) stories you may have posted on...simply bookmark them and they'll stick around for months...so simple, a 4th grader can do it....
paul, yukon - May 31, 2008 4:33 PM
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Robyn, First, I never saw your offer to off-line dialog. As these stories age, these blogs become inaccessible unless the browser is left on or the site saved. Lastly, I would politely decline any further exchange with you or your husband. You have demonstrated by constant name calling and characterizations that you are unable to exchange ideas or differing opinions. How could anyone expect have any logical exchange with you after reading your posts. I challenge you find similar posts written by me of most of the opposing side. Calling people, or characterizing them, as "fools", "nazis", "crooked politicians", etc, etc, does nothing to advance your point of view. The name calling is a desperate act of someone who cannot win any other way. I truly hope that you find a way to help your situation but I also hope that you get there another way.
Bobby, Edmond - May 31, 2008 2:01 PM
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E of Norman: Pay no attention to this Bobby person. He reminds me of the people in Nazi Germany who just sat there and allowed books to be burned and the rights of Jews, Catholics, and a host of other 'undesirables' according to the Nazi's, to be carted off to concentration camps, which would have included my son and my husband since he is Catholic. We have asked to have a dialog with Bobby off-line with my husband who knows more about what transpired at the Capitol than just about anyone, other than Senator Gumm, but he doesn't have the courage to take us up on our offer. Yes, what happened at the Capitol was a matter of what was 'right' and what was 'wrong'. The same way it started in Nazi Germany. Good people who responded to this article won't allow what happened in Nazi Germany to happen to the 1.5 million autistic children in the US. In some 3rd world countries, when a child starts showing signs of autism, they just allow him to starve to death. This is probably what Bobby would lean toward. Getting rid of the less desirables in a way is exactly what the insurance companies are doing when they discriminate against paying for treatments that can and often reverse the effects of autism. Thank God there are people like E of Norman and so many others in our state who support Nick's Law.
Robyne, Edmond - May 31, 2008 12:04 PM
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E of Norman. After reading the same tired long winded post from the same nanny state posters, yours provoked a response. You assume that the "republican" voters are not getting what they want and you assume that you and others are the ones who know what's right. The voters might not all be republican and might really be getting what they want. And who is to say they are wrong. Views on right or wrong too often depend on your perspective. Being shrill or calling people names does not put you on higher ground nor does it make you right. People in general want less government interference or mandates in their lives. This was not the only mandate to fail. Next year there will be more, including this one. If you want to see how well the nanny state works, take a look at California. Many towns and the state itself cannot pay the bills.
Bobby, Edmond - May 31, 2008 10:42 AM
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What a shame. When will the republican voters of this state start electing leadership that is not afraid to stand up for what is right? To all the families struggling with this - best of luck and do what you must to get your children covered!
E, Norman - May 31, 2008 9:43 AM
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Robyne..best of luck to you and yours. I understand the fight you have every day. I have friends of mine with an autistic child and see what they go through on a regular basis....it would be nice if this state would pull it's head out the dark orifice it resides in and starts focusing on some important issues rather than expensive crappers on the panhandle, state rock and roll songs, corporate welfare, art on the highways, etc, and making sure retired legislators make double on retirement what they make doing their part time jobs...
paul, yukon - May 31, 2008 7:05 AM
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My first thought while reading through these posts is,

"What does the price of someone's home have to do with insurance excluding Autism"? Should one sell their home before asking insurance to cover these accepted therapies for Autism?

Taxpayers are already covering the limited services provided by early intervention programs and for the few Autistic children who qualify for Medicaid. So you see, you are paying NOW. And you will pay later when these children age out if they do not receive treatment and have to be placed in state homes.

As I taxpayer I am paying some of these costs now along with monthly premiums for a policy I purchased when my granddaughter was born that excludes Autism. She sees her Dr. for routine visits only. I could say that my premium dollars help cover the treatments that others get who have policies with the same insurance company. Does that mean I want them to start excluding other things to lower my premium? No.

The treatments that would be covered under Nick's Law would have to be requested by the child's Doctor. So no, they would not be covering every experimental new therapy out there.

For me this is only about the children. Autistic children outnumber children with Diabetes, Cancer, and AIDS, COMBINED. Combined. About 400 Children per year are diagnosed in Oklahoma with Autism. Early intervention is critical. Without it many of these children will be lost.

We are not asking "you" to pay for our children's treatments although you may be doing so already. We are saying to the insurance companies - WE want to pay for these treatments through our premiums.

We are talking about children who need our help. They deserve a fighting chance. It's time for Oklahoma to step up and do the right thing.

Please take some time to educate yourself on Autism. It will help you better understand what families are dealing with.

Laurie, Edmond - May 31, 2008 12:31 AM
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True Robyne. We can't make them care, but we can help them understand. People only remain ingnorant when they refuse to learn. Surely we can do better than that.
vicki, Guthrie - May 30, 2008 10:10 PM
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Well said Vicki, but we may just want to take Dan's advice and realize there people out there who really don't care nor will they ever understand.
Robyne, Edmond - May 30, 2008 9:31 PM
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Brock- The Vaccine Injury Compensation Court is comprised of 3 special masters for each court. The Vaccine Court as it has come to be called rejects 3 out of every 5 cases dealing with autism (pressure from pharma, CDC, FDA, etc.). The 4900 before the court have waited 8 years to be heard. The pharmaceuticals, FDA, and CDC have done everything in their power to thwart these claims. There is a 3 year statute of limitations to file. During the 1990's through 2003 families were not told by pediatricians about vaccine court and very few people were aware this court existed until the statute of limitations had expired. We are one of those families. It is estimated that there are 1.5 million children with autism in the US. There are many reasona why some environmental (which includes vaccines) trigger causes autism to occur in a certain population of children who were born perfectly healthy. Research is ongoing on this hypothisis. Many of these children were poisoned by Thimerosal which is comprised of 49.9% ethyl mercury and is still in many childhood vaccines, albeit in various amounts, unlike the 90's when my boys received the full amount of Thimerosal in so many vaccines they received (some vaccines never contained Thimerosal (MMR))..... We urge families to file anyway as we believe decisions from the Special Masters and/or the Vaccine Court will allow a 'look back' for all the families who were not aware of the Vaccine Court and who meet certain a criteria of symptoms. Might want to do some research by talking to parents that live with this disease 24x7.
Robyne, Edmond - May 30, 2008 9:22 PM
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Walter, you don't understand what Robyne is telling you. You CANNOT buy autism coverage. Period. Not before diagnosis, not after. Insurance is about shared risk, shared cost. I'll probably never need a liver transplant, but my insurance covers it, and you can bet I'm paying for it. Same with diabetes, heart disease, etc. And by refusing to let us buy that coverage, they are automatically dumping the entire cost on to EVERY tax payer. It's a case of "pay me now or pay me later." If we can intervene early, these children have much more hope. If we turn our backs on them, at 18 they become the responsibility of the state, and medicaid. At a much higher cost, I might add.

I have a daughter with autism who just turned 18. I could choose to keep her on our personal insurance, which we pay for, and which pays for none of this treatment. OR I can drop her and let everyone else pick up the tab. Your legislators want you to think they're looking out for you, but they're not. They're quietly pawning these kids off on the taxpayers through state services. It's a mandate either way.

So instead of bearing a tiny increase in your health insurance (1%), now you'll be paying for it through your taxes, at considerable cost for the rest of her life. Think about it. Then multiply it by 200 more children per year. If you're paying $1500/month for insurance like the Rohdes, it would go up $15.

We don't want our kids to rely on state services. We want to help them get better. Do you realize a lot of these children have severe intestinal issues, including chronic diahrea? But insurance won't pay for any gastro-intestinal testing OR treatment. That is just cruel. Some of these kids are in tremendous pain. They can't even tell us though, because most of them can't speak. They bang their heads in pain and frustration. They scratch themselves, all kinds of self-injurious behavior. Because they HURT. It's not just about kids flapping their hands and spinning in circles. It's about basic human decency. You wouldn't let your child suffer like that, no matter what name they gave it. Show a little humanity. Most people wouldn't treat a dog like that.
vicki, Guthrie - May 30, 2008 9:21 PM
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Brock, This is Wayne Rohde (wrohde@cox.net). Let's discuss off post. You just sit there in your home in Beaver and simply do not understand. Insurance industry is driving us to government paid for health care and you do not even know it. Free markets and capitolism will be on the menu. Let's talk soon.

Walter and Mitch - you can join as well. Please research insurance and health care before entering if you dare.

Robyne, Edmond - May 30, 2008 8:17 PM
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I am greatly saddened to see that the corrupt within our government have won this round. I'm sure Peterson isn't seeking relelection becuase he knows his career is over and he got a nice big payout from the insurance industrty. Just remember Peterson, you can't take it with you, and when your time comes you're going to wish you had it to buy an A/C or 50.
Kevin, Del City - May 30, 2008 5:17 PM
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It makes me sad to see people still have to leave the best state in the union because of people who make no sense after they are elected to do a job for the people of OKLAHOMA ! The house of(insert word of your choice here) failed to think about the children of today and tomorrow and what their needs will be for a future born and sustained in our great state ! Alas the sun does not shine for disabled children in the state O...f oh we don't have the ways or means to help you live a full life here so we suggest you move to another land that cares more for you than say Oklahoma. I wish I was not disabled myself because I want to put on some soul searching gloves and go ten fiscal rounds with the house looking for money to keep all the great people of Oklahoma in Oklahoma no matter how young or old(me) we are.
With sad heart
Keith W Kemp
Keith, San Francisco - May 30, 2008 1:35 PM
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Dan-as we are leaving to take Nick to Dallas for another treatment....I jumped on to see the posts and have tears in my eyes. Thank you so much for your kind words. No one knows what these families go through except those who are touched by this disease or those who simply know when it is 'the right thing to do'. Take care. Robyne
Robyne, Edmond - May 30, 2008 1:25 PM
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Robyne, please forgive these knuckleheads around here, they are ignorant to your fight. I work with developmentally disabled adults, from autism to mental retardation. Some of these adults were injured in an accident that caused brain damage, making them unable to care for themselves. I see their struggles and share in their pain. Knowing that someone could have helped them, to keep them from getting so bad, saddens me. I applaud you and your husband in your fight, please keep it up. As a republican myself I am disgusted by the actions (or inactions) of my party. They refused to allow you to be heard, to allow this addressed on the floor, and I will take my complaint to them. Please don't lump us all together as being heartless. Keep pushing, I will pray for you and your family and be at your side pushing as well. Good luck!
Dan, edmond - May 30, 2008 1:19 PM
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Robyne, Edmond . . . . You've got to be kidding. Do you really expect to purchase insurance covering the problem after it occurred. Sure no insurance company in Oklahoma or elsewhere is going to offer coverage for en existing condition. I can't expect to purchase car insurance after I have had an accident and expect them to retroac itvely cover the accident, , , thats stupid The time to purchase insurance is BEFORE the problem exists. Look up the definition of insurance in the dictionary or talk to an insurance agent... I'd like to purchase a $1000000 life insurance olicy on my mother who died three years ago.


Walter, Edmond - May 30, 2008 11:59 AM
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what the heck does being a democrat have to do with this topic? What has happened to the conservative republican? Quit listening to the nare-do-well gas bags on the radio and tv. Oh, I forgot Clinton caused the autism problem. Sorry, I forget that sometimes.
Thoughtful, Oklahoma City - May 30, 2008 11:42 AM
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First to burt...no on in Oklahoma at this time will loose $100,000 selling their house. Oklahoma housing market is strong, very strong. Second, anyone planning to have a child should take into account that not every child is born perfect. Ask yourself what if. Third every parent has a choice about vaccinations and if they choose to go that route then ask for single dose viles of the vaccine and don't let the doctor lump several kinds of vaccines in one dose. The federal gov. just settled with a family of an autistic young woman. Yet, they still deny the vaccine causes autism. My cousin has an adult retarded daughter that developed epilepsy at age 9 months after being injected with whooping cough vaccine. She was perfectly normal until she took that vaccine. Parents, do your research. Spend a little more money of single dose vaccine without Thimerosal, Mecury at any level is not acceptable.
Thoughtful, Oklahoma City - May 30, 2008 11:36 AM
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Democrats pushing for another taxation means socialism is alive and well.
Brock, Beaver - May 30, 2008 11:21 AM
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robyne would you like to pay for the ills/problems in my life????
mitch, Oklahoma City - May 30, 2008 11:17 AM
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After reading these comments, it is apparent that some of you have no idea what Nick's Law is about. First, there are NO Insurance Companies in Oklahoma that pay for Behavioral Therapy or more than 20 visits to a speech, occupational or physical therapist. NONE. We cannot purchase a rider, NONE Exists. Most of the parents with autism in their families have insurance we pay upwards to $1500/month for and none of the treatments our children need are covered. Autism is a medical condition just like diabetes, cancer, or Aids. Autism is more prevelant than diabetes, cancer or Aids, yet these diseases are covered under insurance that at one time had to be mandated. We have had no insurance mandates since 2003, yet our insurance rates keep rising, our deductibles keep rising and benefits keep being reduced. 10 years ago when there was little to no treatments available for autism, autism was covered by insurance, but now that treatments are available and are quite expensive, big insurance decided to deny any claims for anything related to the autism diagnosis. I am a state worker, my husband works for a non-profit, we have used up all our retirement and continue to borrow from family to pay for our son's $4000/month treatments (his occupational and speech therapies alone cost $640/week). I would like to thank those of you who understand the implications of what happened last week. To the rest of you....we will be back, unfortunately in higher numbers. Another 400 children will be diagnosed this year. Also, regarding the vaccines. We are not required to vaccinate our children in Oklahoma. We can refuse to vaccinate based on philosophical reasons. I'm not advocating anyone does this though. The vaccine schedule is much too aggressive and needs to be rolled back. Personally, I would take Measles, Mumps, or Chicken Pox over autism any day of the week. But the vaccine issue is a whole other problem. We need to get Nick's Law passed and we will.
Robyne, Edmond - May 30, 2008 11:02 AM
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4,900 families have filed claims with the U.S. Court of Claims alleging that vaccines caused autism and other neurological problems in their children. Lawyers for the families are presenting three different theories of how vaccines caused autism. The theory at issue was whether vaccines containing the preservative thimerosal(49% mercury) caused autism. More than 12,500 claims have been filed since 1987, including more than 5,300 autism cases, and more than $1.7 billion has been paid in claims. There is now more than $2.7 billion in a trust fund supported by an excise tax on each dose of vaccine covered by the program. Why doesn't this newspaper print that news as opposed to always pushing the agenda for more government control through mandates upon others that aren't the cause and shouldn't be involved? Are the people with autistic children from Oklahoma involved with these claims or are they just looking for special consideration within the confines of Oklahoma? Bottom line is, our legislature needs to release insurance companies from all mandates and encourage a 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 another forced expenditure(tax), as it is with most mandates and regulations, it would actually worsen the problem of health care costs and consumer choice.
Brock, Beaver - May 30, 2008 10:54 AM
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Floyd-We DO know what treatments work, however every child is different. This disease isn't treated by 'one size fits all'. I speak from experience, since we have lived with autism for 6 years. We provided an independent actuaral study performed that many of the states who passed the same law used (they used the same methodology) and Peterson wouldn't look at it. Senator Gumm has more courage than the entire House of Representatives. Senator Gumm goes to the Capitol and does what his constituents elected him to do. The work for the people. Peterson, Benge and Blackwell go to the Capitol and do the work Big Insurance pays them to do. They made their decisions to get money from big insurance to pay off previous campaign debts and to get more money to pad their pockets for November. Wait another year? These children don't have another year. Everyday that goes by that an autistic child doesn't receive treatment could be the day that child is lost forever. Then guess who is going to be footing to bill for a grown man who can't even communicate his most basic needs? You will, my friend. So before you go spouting your words of wisdom about this issue, do a little research. My husband was at the capitol everyday during this last session, meeting with senators, representatives, republicans, and democrats, EVERYDAY. We know the reason for the cowardly manner in which Benge refused to allow Nick's Law to be heard, it was for his own selfish interests. Robyne Rohde, Mommy to Nicholas (Nick's Law).
Robyne, Edmond - May 30, 2008 10:32 AM
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The autistic childs parents CHOSE not to purchase insurance to cover this affliction. Instead they chose a multi $100,000 in which to live and probably other luxuries that I cannot afford for myself, Yet I am being asked to pay for child care for a child so that the parents can live in a lifestyle I widh I could afford for myself.. Talk about GREED and lack of self resonsibility and self respect, these parent have it

Walter, Edmond - May 30, 2008 10:21 AM
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I am wondering if these children are eligible for Social Security Disability? How much that is, and if it includes some medical care?

I agree with you, Cheryl, about the mandated shots parents are forced to have given to their children.
Barbara, poteau - May 30, 2008 10:20 AM
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Mitch, none of us do what Jesus would do all of the time, but we should try. That is called the Christian Walk. When we see an obvious right vs. an obvious wrong, we need to choose the right. That is what Jesus expects of us.
J, Anonymous - May 30, 2008 9:59 AM
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I bet most of you people who are opposed to this call yourself christians. "Good Riddance!! Your child is your responsibility, not mine!!". This is Christian behaviour. What would Jesus do? Shame on you.
J, Anonymous - May 30, 2008 9:54 AM
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Meant to say 2 week old dog...
david, oklahoma city - May 30, 2008 9:54 AM
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Yea what people don't understand is, there is a power far greater then any of us mere humans on this planet. If we display arrogance or do something stupid, it comes back on us ten fold. What goes around, comes around. I will us these examples. When I was younger, I had wished my step dad would die, and told him that. The next day, my 2 week old died, from absolutely nothing. Coincedence? I think not. Me being put in my place for my stupidity? I think so. Another one would be before I was born. My mother told me she had told her sisters husband she hopes he croaks, because he was abusive. Still what happens? Her 16 year old sister gets murdered the very same night (there were three sisters now only two.) Coincedence? Well you can figure that one out. Call out a families lack of funds to support a child they never thought would get autism, and you just may find yourself in their shoes. WHAT GOES AROUND COMES AROUND! Some call it karma, some call it god (I call if god,) but rest assured, YOU CANNOT ESCAPE IT! Autism coverage >>>>>>>>>>> Viagra. Point blank...
david, oklahoma city - May 30, 2008 9:53 AM
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Be very careful what you say, Jerry! As this disease become more and more prevalent, the chances of your own child, grandchild or a friend's child becoming autistic is very likely. I hope you will learn about the disease then and do what is necessary to help that child. My family is currently learning sign language because my 2-year-old granddaughter is autistic and that is the only way to communicate with her. We love her tremendously and will do EVERYTHING possible to help her fit into society and to protect her from ignorant people like Jerry.
Cheryl - May 30, 2008 9:45 AM
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cheryl - your black helicopter needs a new engine.
mitch, Oklahoma City - May 30, 2008 9:43 AM
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Yea and why would inssurance cover Viagra, so some old geezer can get some, but won't help Autistic children who really need a way in life? Doesn't make much sense to me, but hey, we live in a capitalist asshat Bush nation, so I guess it is to be expected. Our pennies are their dollars right? PFFT!
david, oklahoma city - May 30, 2008 9:36 AM
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Jerry, you should be ashamed of yourself first and then go research Autism, because you obviously are ignorant. Autism affects 1 in 60 children and is quicky becoming a major problem for society. If these children are NOT treated now, they will become society's future problems. As Jamie pointed out, our insurance covers treatment that I also do not consider "necessary health issues", however, it won't cover treatments for these special needs children. I believe it will eventually become apparent that the US Government's mandated childhood vaccinations are to blame for causing many of our children to become autistic, and Oklahoma's elected officials should be ashamed for not doing what is best for ALL Oklahomans! It is now time to vote out any elected officials who are on the lobbyist's payrolls as Mr. Benge apparently is.
Cheryl - May 30, 2008 9:35 AM
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Good riddance.Your child is YOUR responsibility not everybody else's. Ohio needs you folks. <------ Spoken like a true capitalist. It is true that kids are the parents responsibility, but what happens if your kid is born with ailments that could place strain on your bottom line? What happens when the economy is so crappy (unless you're rich,) that gas is near 4 bucks, and a gallon of offbrand milk from Walmart costs 4 dollars? There is nothing wrong with these people seeking aid, and I bet when you get to be an old man/woman (if you're not old already,) and you need assistance in some form, you will be barking up the same tree... Of course again, unless you are rich. In anycase, your statements show how us humans display such arrogance and inferiority, and why we will never evolve past the typical savage beast. Perhaps God will show you these peoples pain in time, due to having such a big mouth. Just my opinion though. As for the family itself, I hope everything works out for them in the future.
david, oklahoma city - May 30, 2008 9:34 AM
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james, midwest city, if we always did what jesus would do -- we would all be broke. personal responsibility -get some!!!
mitch, Oklahoma City - May 30, 2008 9:33 AM
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I bet most of you people who are opposed to this call yourself christians. "Good Riddance!! Your child is your responsibility, not mine!!". This is Christian behaviour. What would Jesus do? Shame on you.
J, Anonymous - May 30, 2008 9:28 AM
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I bet most of you people who are opposed to this call yourself christians. "Good Riddance!! Your child is your responsibility, not mine!!". This is Christian behaviour. What would Jesus do? Shame on you.
J, Anonymous - May 30, 2008 9:28 AM
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Yes, my child is my responsibility but it seems unfair that my insurance would cover medication like Viagra, for Erectile Disfunction yet it refuses to cover the cost of speech and occupational therapy. What my husband and I should do is quit our job and get on medicaid. It does cover speech and OT for kids. I would like to see anyone with an average income cover the expenses of only these two therapies for a kid with Autism. I was given the "discount" for those who don't have insurance. The price quoted was $100 per session and he needs at least two per week, that is for speech only. Add OT to that and you are talking about at least $400 a week! Most people can't afford $20,800 a year on top of all the other medical issues a condition like Autism causes.
Jamie, Yukon - May 30, 2008 9:24 AM
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Good riddance.Your child is YOUR responsibility not everybody else's.Ohio needs you folks.
Jerry L., Guthrie - May 30, 2008 9:09 AM
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does ohio even offer autism coverage??? your son is your responsibility not mine, that is why i will continue to ask my legislator not to vote for mandates.
mitch, Oklahoma City - May 30, 2008 8:50 AM
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das, remain true to your flippant attitude when this diagnosis strikes the child of a friend, or family member. You'll never have enough regret for making light of this. Ever.
Chris, Madison - May 30, 2008 8:22 AM
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das, you'd better remain consistent with your flippant attitude when this diagnosis hits a friend, or family member.
Chris, Madison - May 30, 2008 8:20 AM
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This is terrific news! This family has the FREEDOM to choose one of 50 different states. THANK YOU Legislature for not *forcing* ME to PAY for anything and everything! All Oklahomans can ALREADY PURCHASE this kind of coverage - it's just optional, the way it should be!
c, Oklahoma City - May 30, 2008 8:18 AM
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Speak for yourself das.
AngelGirl, Ninnekah - May 30, 2008 8:16 AM
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das, you are a true imbecile. In a day and age that making humor out of a diagnosis that horrifies every parent, you are a shining example of a society that has gone to its newest low.

You are excrement, and need a lot of help. Face your issues.
Chris, Madison - May 30, 2008 8:12 AM
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My son is one of those missing out. We live in rural Oklahoma and private school is not an option. The school refuses to help because he is not flunking out. The insurance company won't pay for treatment. I am angered at people like Floyd (below) who want to study the effects. My son almost never goes to the doctor and take no medication. He is not a drain on our insurance. He has problems that need treatment, but we can't afford them. On the other hand, my insurance company will pay for Viagra, obesity treatment, smoking cessation, and all kinds of self induced problems. I guess all the old men who want Viagra and more important!
B., Tishomingo - May 30, 2008 7:56 AM
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Autism is not new, and the lack of coverage isn't either. It would seem logical companies would cover the condition just like any other. But the national group website talks about dozens of treatments that have been found effective for individuals...some expensive, some outrageously expensive. How much is needed and what treatments are the most effective? No one seems to have an answer. Peterson's course is the wisest one, despite the protests of Southern Oklahoma's bulldog. Let's study the effects of these other states that mandate coverage, and try to do something for these families next year. Maybe Gumm will show some real political courage, and go with the Ohio model. It's a bit easier to go after the big bad insurance company, but in either case, we have to remember that it is the people, taxpayers or rate payers, that will foot the bill in the end.
Floyd R, Purtle - May 30, 2008 7:45 AM
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Once again, Oklahoma drops the ball on caring for it's citizens, but they're giving you an NBA bassa'ball team and giving it's already rich owners 60 million in tax breaks for those all important 25-30 jobs they're bringing to this state....perhaps when this poor family is leaving Oklahoma, they'll admire the artwork the state paid for along the turnpikes and that'll help soothe their frazzled nerves....
paul, yukon - May 30, 2008 7:41 AM
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It's a shame that our federal government can waste $12 billion plus per month in that sand pit (Iraq). Our local government can vote to give their sorry @$$e$ a raise for "do nothing" work. Yet, they failed to provide healthcare assistance to our most needy children.
j3lly, Boon Dock - May 30, 2008 7:39 AM
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My family is one of those who is not covered for Autism treatments by the medical insurance my husband's company provides. We also cannot begin to afford the number of treatments for speech, language and developmental services my 2 1/2 year old son needs. If Nick's Law or something like it is not passed next year, we have already made plans to leave the state for someplace with better options for us. It is a shame too because we love it here and I and all of my children were born in Oklahoma. But any place that won't consider my child's best interests over an insurance company's already oversized wal