Chicago Tribune Protecting Consumers Against Natural Supplement (Again)
Win The Autism Cookbook by Susan Delaine from Skyhorse Publishing

Don't Kid a Kidder: Autism Speaks, Insurance Lobbyists and Lorri Unumb

By Chris Petrosino

One of my favorite episodes of the Rockford Files was when Jim Rockford (James Garner) told the con man, Angel Martin (Stuart Margolin), "Don't kid a kidder." I would venture to say the autism community would make the same response to Lorri Unumb, senior policy advisor and counsel for Autism Speaks. Unumb, an attorney and law professor, recently scribed a disingenuous memo in defense of New York State's S.7000B/A10372A, the abominable autism bill opposed by many national and local autism groups. (See the Age of Autism post, NY Legislature Passes Separate & Unequal Autism Insurance Bill Championed by Autism Speaks for details.)

A recent Newsday editorial, which examined this matter, diplomatically, in detail, also opposed  the bill.  First of all, insurance company lobbyists contributed significant sums of monies to the Insurance Committee Chairs who tried to force feed this bill to our community. Additionally, Autism Speaks consulted with one of the largest insurance company lobbyists, Manatt, who helped write and advocate for this bill. So, please, don't kid a kidder.

However, I do not think the corporate friendly Autism Speaks, or Unumb, consulted with Rubenstein, the penultimate public relation firm that Autism Speaks paid at least $455,000.00 in 2008. It is never a good idea to chide fellow parents for being objective about the fears they have for their children's health. If anything, Ms. Unumb, who portends to be representing all of our children, should be more objective. If you are going to point out that you are an attorney and a law professor, defending our children, you have an obligation, like any attorney or professor, to give us the pros and cons of pending matters. But, Ms. Unumb only wants to tell us only what is good about S.7000B/A10372A. She only wants to tell us what she wants to tell us. And, unfortunately, she may not even give it to us straight.  Please see the following comments Unumb made in an interview with CNN:

"...I've met so many other moms who were doing the best they could, and I just wanted to say to them, 'You know, an hour a week of speech therapy for your child is never going to make him better,' " the mother of three says..." "...But I didn't want to tell them what they needed is 40 hours a week of therapy, because there's nothing they can do to buy that..."

The advocates that oppose Unumb's NYS bill roll their eyes when they read the above. We look at these problems in a different way. We  tell the moms the truth and help them advocate for those hours. We give them the science to prove they need the hours.  They do not have to buy those hours if we teach them how to fight for what is rightfully theirs. It is easy to say, "Hey, I have mine. I do not want to rock the boat or start a ruckus." Non-discriminatory health care is our children's right. We will not stand for a compromise that benefits corporations instead of our children.

As per the frustration with insurance companies in Unumb's native state of South Carolina, she got that right in the interview:

"It's not like you read your insurance policy and you can see a specific exclusion," Lorri Unumb says of the early days after Ryan's diagnosis. "We submitted bills, and we'd get denials back that said 'experimental... denied,' or 'provided by a non-licensed provider... denied.' Or sometimes the insurance companies would say 'this therapy is educational in nature, not medical... denied.'"

Ms. Unumb wanted to stop this type of discrimination, right? She did moderately well with the wording in the  South Carolina autism insurance bill. In a recent memo, she proudly states: "In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:" A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating medical doctor in accordance with a treatment plan."

But, it is just too gosh done bad for us Yankees up here in New York. We don't get the benefit of the above, broad language. We get a different type of wording. We get a type of wording and government regulation in our NY bill, never before seen for any illness or disability. The type of wording that would stimulate and exacerbate, for us, to the 10th power, the frustrations she quotes. We get to have therapies and treatments reviewed by a multi-agency committee that will evaluate the efficacy of  those therapies and treatments under the broad guidelines of: "evidence-based, peer-reviewed and clinically proven." She did not write that into the South Carolina bill. Why is it written into ours? The bigger questions that are screaming out to all in society, especially the sick and disabled are: If you take the decision of what is necessary away from the treating doctors and place it in the hands of government regulators, where does it stop? Will there be a NYS multi-agency committee for Down Syndrome? For cancer treatments? For senior care?

When you successfully advocate for legislation to help families, like we did with "Jonathan's Law," you find yourself in the messy gauntlet of politics. There is always, naturally, an antagonist. You keep looking over your shoulder for that person who is going to waylay you. But Unumb did not have to worry about that. When into Albany rode Unumb on her horse, the insurance companies screamed, "Yee hah!" You see, the fix was in.

Aside from being so cozy with corporations, there are other good reasons to question the sincerity of, and simply not believe Ms. Unumb and Autism Speaks. They continue to forcefully indicate that  S.7000B/A10372A will cover such treatments as ABA, speech therapy and occupational therapy. And, a la Angel Martin, they say this with their best poker face. Shakespeare is quoted, "What's past is prologue." Originally, Unumb, Autism Speaks (and the insurance companies) were lobbying for the American Pediatric Association guidelines to be used to determine what would and would not be covered in this bill, until such time that the multi-agency committee made those determinations. It would stand to reason, if you are an educated attorney/professor, that you would have read the guidelines you are endorsing. If Unumb were solely a passionate but uninformed advocate, she would get a pass on this. She is not. The intentional web of lies is coalesced.

Please see analysis and some quotes from the APA guidelines below:

Apparently, routine screening for seizure activity is contraindicated. It appears that you should not check out a child for seizure activity via EEG until he/she has a full blown out seizure. Also, you should not do gastrointestinal work-up unless there is clear indication the child is having GI issues, which could include behavioral problems (not bad idea). Therapies such as ST, OT, SI seem to be recommended as educational treatments, not medical treatments (would be just fine with the insurance companies). APA not strong on their endorsement of these helpful therapies, even under educational.

Medical Treatments

Seizures - "...Whether subclinical seizures have adverse effects on language, cognition, and behavior is debated, and there is no evidence-based recommendation for the treatment of children with ASDs and epileptiform abnormalities on EEG, with or without regression. Universal screening of patients with ASDs by EEG in the absence of a clinical indication is not currently supported. However, because of the increased prevalence of seizures in this population, a high index of clinical suspicion should be maintained, and EEG should be considered when there are clinical spells that might represent seizures..."

Gastrointestinal - "...The existing literature does not support routine specialized gastroenterological testing for asymptomatic children with ASDs..."

Speech Therapy, Occupational Therapy, Sensory Integration Therapy and Social Skills - Therapy falls under Educational, NOT medical in AAP document. Nevertheless, AAP is not really endorsing any of these therapies:

Speech Therapy - "...However, traditional, low-intensity pull-out service delivery models often are ineffective, and speech-language pathologists are likely to be most effective when they train and work in close collaboration with teachers, support personnel, families, and the child's peers to promote functional communication in natural settings throughout the day..."

Occupational Therapy / Sensory Integration Therapy - "...However, research regarding the efficacy of occupational therapy in ASDs is lacking..." "...Unusual sensory responses are common in children with ASDs, but there is not good evidence that these symptoms differentiate ASDs from other developmental disorders, and the efficacy of SI therapy has not been demonstrated objectively..."

Can Ms. Unumb and Autism Speaks tell us that the agencies will not quote these guidelines to deny treatments for our children? Of course not! Can they tell us that the agencies will agree that insurance provide ABA, speech therapy, and occupational therapy? They should not! Those questions take us back to A6888a, the autism health insurance bill our community really wants. 6888a is a decent, honorable bill. It will protect the health and civil rights of individuals affected by autism. Assembly bill A6888b, sponsored by Assemblyman Koon, lays out a very clear plan, in the bill itself, for covering reasonable therapies such as PT, Speech and OT. It provides, in writing, in the bill, for psychological care, psychiatric care, anesthesiological services (when ordered by a physician or dentist), and endocrinological care. It is a thoroughly comprehensive bill (broad in the right areas) that requires insurance to pay for treatments that are prescribed by doctors to: "...prevent the onset of an illness, condition, injury, disease or disability; reduce or ameliorate the physical, mental or developmental effects of an illness, condition, injury, disease or disability; or assist to achieve or maintain maximum functional activity in performing daily activities.."It is clearly laid out in writing. There is no wiggle room. There are no committees. It is not a compromise bill. It will end insurance discrimination. This bill was well on its way when Unumb and Autism Speaks came in to bail out the insurance companies, using broad language that would give them the ability to deny coverages.

It is unfortunate that we have to confront people and organizations who pretend they are doing the right thing for our children and really are not. They make misleading statements to our community to get a bill passed, any bill passed; even if the bill puts the needs of corporations ahead of our children. Our community is taking notice of that, more and more, every year. Many of us are silent because we are completely overwhelmed by autism and just don't have the time to get involved with these matters. We take it on a faith basis that everything is fine. That's exactly what the insurance company lobbyists and some autism groups counted on when they besmirched the truth. And there are some that have the wherewithal to understand these issues, yet remain silent. They remind me of my dog, when she sits up, salivating for a treat. The continuance of, or the prospect of a paid position with Autism Speaks, funding from Autism Speaks, corporate America, or NYS legislator-administered block grants, has them, willfully, tongue-tied. I wonder how these people, and they know who they are, can look at themselves in the mirror, or sleep at night.

Such a depressing state of affairs requires a semi-humorous ending. Another entertaining television show of yesteryear was Abbott and Costello. There was a great back and forth between Bud Abbott and Mike the Cop. Mike the Cop was agitated and was ready to arrest Abbott for something or other. Abbott asked Mike the Cop a series of questions. It was a logical progression of explaining to Mike the Cop that he was being paid by the police department to protect the citizens, which department used taxpayer dollars for his salary. Mike readily agreed that Abbott was a taxpayer and was, therefore, paying his salary. Once this was established, the argument was over when Abbott yelled at Mike the Cop, "You're fired!" Right now, there are thousands of families in New York who would like to say that to Ms. Unumb, and of course, Autism Speaks.

Chris Petrosino is the Father of Chris, a 17 year old boy affected by autism, Wife Joan, three children, Chris, jr., 17 years old, affected by autism, VP of Nassau Suffolk Chapter of ASA (former pres for seven years) - information and referral, advocacy, coordinate free programs for families, etc. He is also the site administrator for New York State Advocacy Central for Autism  ( where he put up alerts, organizes responses, calls legislators (when they tell me they have not heard from our people (BS), I tell them, "Please excuse me, but our database shows that you have received 147 emails in this matter. Do you want their names and addresses?") a part time private investigator and a part time student (nursing).



Space Kitty;

Go to June 13, 2010 under Liquidambar

"Johnson and Johnson Recall Raises Ire"


Benedetta, if you want to give me your email address, I can send you a 20 page packet of everything we did. It answers any question that has ever been asked of me.


Wow, Space Kitty.
That is some good information
Much thanks.


Our HMO uses Metametrix. But I think your doctor needs an account for it. Depending on your state, you will need a prescription for all labs. If you don't have a doctor who is willing to help you, then I would suggest Great Plains Laboratory in Kansas. They send out all their metals tests to Doctors Data which is also a good lab. But with the Great Plains tests you get with purchase a phone consultation with someone who will spend an entire half hour on the phone with you and explain the findings and what you might do next as far as diet or further investigation... etc. If you google great plains laboratory, get their phone number, call them and request their free information packet. It has a terrific page that lists ailments/disorders and what assessments might be done to fix the problem. It also has pages of explanations on metals and testing. Also.... insurance information.


Space kitty;

Who or how did you get a provoked chelater or porphyrine.
Was it a medical doctor that ordered it, or did you hire a separate lab?

If so how did you find this lab?


It was blood test of course!
What they found (after a long drawn out ordeal - X's -3 because of son and daughter))was an acquired mitochondria disorder.
Thanks for that information on the test.


Benedetta, how did they test him? Did they do a provoked test with a chelator? Or a porphyrine? Or did they just check the blood? Just checking the blood will only show an exposure in the past week. My son's blood test was negative, we paid out of pocket for our proof. I had a vaccine injury myself from MMR. I had it when I was 30 becuase I wanted to volunteer at the children's hospital. They tested my titers and it showed I needed a measles vaccine. I had no idea way back then that they gave me MMR. Within a week I was blacking out, visual stimming, absense seizures. I was sent from doctor to doctor looking for answers being checked for MS, etc. I told them I thought it was the shot and everyone ignored me. I didn't realize thought that it had been MMR until last year when I happened upon my vaccine records, and there it was.


Space Kitty;
We never received any chelation.
By the time my husband was injured by vaccines we learned to keep quite about it and you get more help. So we did that plus
We lucked out on having a very good internialist for my husband's doctor.

My husband just kept going back with ever new symptom. She looked at him as a medically curiosity - a challenge. She later quit her practice and went into research, she was a good people's person but she (her kind) is needed in research.
She finally tested him for heavy metals and found--------- nothing?? No mercury, no arsenic, no heavy metals.

That is why I am always amazed when something is found and I am afraid that it is something that maybe was missed.


Bennedetta, perhaps that is not the right term... that's what I call her...
We were sent to her for a metabolic work up. She specializes in genetics and metabolism. There were no genetic issues with my son. We provided the metals tests for her, and it allowed her to put 2 and 2 together. I don't think she would have been able to order the tests herself. I read below that you have been covered for chelation also... how did you do it?

R Prasad

I have decided that I will no more participate in "Autism Speaks Walk".


What is a metabiologist.
Is it a specialist in a medical field.
Is it a medical doctor that has speicialized in metabolitics???

Is that what they are listed under?
What kind of city (big - or average) size city did you find this metabiologist in?


Jennifer, We have never sought any sort of therapies for our son through insurance.. Just medical needs. We proved he had metals.... we also used great plains to prove he had blood in his poop... that got us a referral to a GI doctor. The GI doctor did nothing for us ... But she was concerned about other issues which got us to a metabologist. When the metaboligist saw our son's metals test she wrote a 4 page letter shaming the insurance for not covering him. Yes, Bennedetta, you are right.. it is a mess... And I'm right there with you on the practicing what to say to the doctor. Over and over and over again... writing just the right letters,, making just the right phone calls,,, taking our son in on every food infraction so they would document his regression... but for us, it did all pay off for our son.


I agree with you Space Kitty.
That was pretty much how I did it.
But let me tell you it is a mess to figure it out yourself.
It is mess to figure it out yourself, try to find a doctor that will listen, practice what and how you are going to talk to the doctor, practice how fast you can say it, and then pray the doctor will be responsive.

Sounds like a lot of heavy metals. I am amazed every time I hear this. I am so very sorry it is so, but so very glad you have discovered it.


The thing is, different kids will benefit from different therapies and bio-medical interventions. My daughter has terrible SPD but is considered NOT on the spectrum. Maybe at two she would have been, but not anymore. AIT wasn't covered by insurance but her occupational therapy is. Individualized plans make more sense (like Brain Balance Centers offer for instance) but how do we prove to our insurance companies what is "necessary"? It seems like they will always have a reason to deny coverage...

Tanners Dad

So let's all recap this again... I have heard from every state that has passed Autism Insurance reform. Everybody is proud of their bill but everybody also knows their bill falls short. It seems to me the range of real effective coverage will be about 10 to 20% of those who need it. So when we hit about 25 states who have passed the bills we become a grossly have & Have not society & we can demand a national mandate. At that point we can fight for more teeth in the bill... even if we get coverage to say 25% of what it should be that will take a bite out of the Insurance Industries bottom line once it ramps up... I know corporations that have fought for one dollar if they think somebody else is responsible for the bill... We all know who is responsible.
Autism Speaks... Take it from a Zen Master ( Really just a guy who had two heart attacks at 38 & came within 60 minutes of dying ) We have much bigger things to worry about... We need Pharmaceutical industries & Government type money... NOT measly AS 65M Try 65 Billion for starters... TannersDad Tim


Benedetta, yes....... he is toxic with mainly mercury... and some lead, but now that he is in full chelation mode we are seeing aluminum, arsenic,.... Everything is high right now. They say it comes out like a bell curve, and that is what we have seen. Our HMO is paying for all chelation needs... they aren't covering a few things that they are calling "supplemental" like glutathione, mb12, etc... It is a parent's job to prove their child is sick and then get the insurance to cover medical needs. The standards of care are not permitting appropriate testing. As the primary care taker of our children, we must do it ourselves and prove what they need.. It sounds crazy... but that is what needs to happen.


It's OK to be ticked off that you didn't get the bill you wanted. However those who think it was an either or are delusional. The other bill would have likely died in committee. I too was ticked off that in my State, Illinois, we got a bill passed that fell far short of acceptable (only 17% of those who should receive reimbursement will), But keep in mind that with the Chamber of Commerce and Insurance lobby groups so ingrained in any legislation, getting what you want in a bill without their input and agreement off is naive.


I wonder when the insurance companies will realize that if they can pinpoint fault for autism that they could be relieved of the financial burden to pay for treatments?

Wouldn't it be nice if the insurance companies would fund a little out of their pockets on studying the vaccine connection? If they can link autism to vaccine damage then they could pass the cost back to the federal government.

I would think insurers would be all over this...wonder if it's occurred to them yet?


Autism Speaks is just another part of the CDC anti-litigation bloc.

The Pretending to Combat Autism Act
By Bernard Rimland

(Dr. Bernard Rimland was the founder and director of the Autism Research Institute. He passed away in November 2006)

I strongly oppose endorsing "The (Pretending to) Combat Autism Act" unless it includes clear and explicit language supporting meaningful research on the role of vaccines and mercury as plausible causes of the autism epidemic.

The proposed Combating Autism legislation is as sincerely dedicated to combating autism as O.J. Simpson was to finding the "real killers" of his ex-wife Nicole.

The fear that failure to pass the CAA will lead to a catastrophic failure to fund future autism research vastly overestimates the value of government funded research. Most such research is only of academic interest, which gathers dust on library shelves and advances the "publish or perish" aspirations of academic researchers. Is there any evidence whatever that more than a miniscule percent of government funded research has produced any positive and useful benefits for autistic children and their families, or ever will? If you are aware of any examples showing such research is serving a truly useful purpose, please let me know.

I was the first to announce the "autism epidemic", in 1995, and I pointed out in that article that excessive vaccines were a plausible cause of the epidemic. As you know, an enormous amount of clinical laboratory research (as opposed to epidemiological research), has been accumulated since that time, supporting my position. (I did not know then that the vaccines contained mercury, although I had been collecting data since 1967 from the mothers of autistic children, on any dental work they may have had during their pregnancy.)

The evidence is now overwhelming, despite the misinformation from the Centers for Disease Control and Prevention, the American Academy of Pediatrics and the Institute of Medicine. Real progress has been made in bringing recovery to autistic children by physicians and researchers who attend the autism/vaccine/mercury connection.

A few million dollars, appropriately directed, has accomplished, and will continue to accomplish much more than the tens of millions of dollars directed along paths intended to exonerate the vaccine manufacturers, the CDC, the IOM and the AAP.

I hope our consortium will purchase, or at least threaten to purchase ads in USA Today an elsewhere saying "Defeat the (Pretend to) Combat Autism Act". We should insist that significant resources be directed at exploiting the treatments that we know work, such as special diets, food supplements and chelation. We have a great deal to gain and nothing to lose by speaking out loudly against this sham legislation which would, in the long run, be harmful rather than beneficial to our children.


There is a good fight taking place in North Carolina right this very second. Of course no one expects the bill to provide everything we need here but it does force insurance companies to recognize us. I know that this bill will ultimately discount anything that doesnt have a "science based" stamp of approval by the AAP, that's a given. I admit, Ill take anything right now, but I wont stop fighting. There are loopholes on both sides, with the right doctors and attorneys we might ultimately win. I hope.


Space Kitty;
What did they find out about your child? Did they find heavy metals?


Again.......... The word Autism is being used by insurance companies to deny coverage. YOu must deny the label, prove your kid is sick, and then seek insurance covereage. It worked for us. Our HMO is covering chelation. We had to prove it, and then make the HMO prove we were wrong. Twice they proved we were right in the process. Fight for medical needs and you may not need the ABA etc. Our kid recovered through diet, supplements, and detox. He's a normal boy in a normal class. It took 3 years to get his medical needs covered. It was well worth it. go for it. We all must go for it and hold their feet to the fire... and ignore Autism Speaks as they speak for the devil.


Fortunately, here in Texas, it was NOT AS, but a group of determined parents who pushed for the mandate. We have a really good bill...
Unfortunately, it helps less than 25% of families, since most companies have self funded plans.

Here is what gets me - why the heck does AS spend all their time going from state to state?? Why have they not pushed for a federal mandate? Sure, it's a little tougher, but then EVERYONE in the country with insurance would have the same coverage.

Nope... Instead, they take the money they suck out of your community, and spend it on their overpriced staff, going state to state, trying to negotiate horrible legislation for families dealing with autism.

This AS sponsored bill in NY is a disaster! I'm praying this bill is defeated, and sent to the trashcan!

Autism Speaks does not speak for our kids!


Speaking of walks, a co-worker of mine is fairly unhappy that I will not help him organize an Autism Speaks walk in my home city... I gently explained my objections with AS, including the lack of grant money to families, the stupid crap research they are doing, and he asked me, "Who are you to say what kind of research AS should be doing as you are not a doctor?"

Not so surprisingly, he didn't even know who AS was founded by (the names Bob or Katie Wright were not recognizable to him), anything at all about their now infamous tax return, and seemed not to care a bit that they paid over a half million dollars to their lead scientist. I stood there with my mouth hanging open, like, seriously - how can you be all gung-ho about these people, and not know the absolute first thing about them?

It's freaking *amazing* how people just go with the flow, don't ask questions, assume orgs like AS are noble and legit, and then tell me I shouldn't care what kind of autism research they are doing because they have doctors who decide that stuff, and oh, *you* are not a doctor so your opinion doesn't really matter.

I'm sick of AS.


Called and called and called again, but to no avail. I find it heinous that our kids are being thrown under the bus like this, especially by those who purportedly want to help them. Well, I'll do my best to vote the bums out when the time comes...


Colorado also has one of the worst autism insurance bills that has been passed. The "help" provided by Autism Speaks was a joke, in the end the folks working it compromised far too much for the sake of the warped concept that something is better than nothing. I have participated in the process to get ABA coverage for military families, and believe these watered down bills hurt our efforts to get full coverage. Accepting less than what a doctor prescribes based on validated research undercuts our kids rights and sends the message they are not worthy. The message is we should be grateful and feel "lucky" to get anything for our pathetic kids. With advocacy like this, who needs enemies?


No other state has been encumbered with such an inherently insurance company friendly process.

When Autism Speaks attacked Florida families with so called Autism insurance "reform" apparently the completely discriminatory and vastly exclusionary bill was ignored by national advocates.

Florida essentially has given insurers a huge entitlement thanks to Autism Speaks.

The only loss was the God-forsaken Autism Speaks' Autism Pill. Fortunately, for the ASD kids in Florida the Autism Pill flunked in trials. Otherwise, the Autism Speaks insurance "reform" here would consist of bargain-basement ABA therapy coupled to the Autism Speaks Autism pill.

I guess that's why all the national advocates make the big bucks?

R Prasad


It is a pity that Autism Speaks has become a lap dog of insurance industry as similar to FDA has become the lap dog of pharmaceutical companies and Vaccines makers. Autism Speaks is now speaking for big Corporates, not for Autism kids.

R Prasad


That's a terrific statement. Equally guilty are federal government, CDC, FDA, IOM along with insurance companies. Autism rates are going up every passing hour. They will have no choice but look into the real culprits (Vaccines and Mercury).


Autism is the insurance companies (and Pharmica's) oil spill. They dutifully paid for the vaccinations but now don't want to pay for what they did.


I'm sure they've already set their sites on other states. Possibly North Carolina, judging from the totally vague and lacking websites of The Autism Society of North Carolina. Autism Speaks supports their insurance reform stuff and appears to follow that same pattern of trying to eliminate anything that doesn't meet that unbalanced level of scientific "proof." So apparantly doctors are welcome to use drugs in an off label fashion, but not so for anything having to do with autism. I'm not even sure that the Autism Society of NC even believes autism can be cured. But they do have cute little canvas bags. They are excellent for carrying diapers . . .


As always,

Autism Speaks is an organization that "walks in circles,"

changing the "walk direction" every other year so the walkers will think they are on a new path to a cure...

bob damelio

This is one scary site.. Wow!!

Tanners Dad

I guess it is my turn to be the devil's Advocate. As a bleeding heart Conservative my philosophy requires me to be 100% Committed to make the BP's of the world pay. In the Case of Autism / Vaccine Injury who is our BP? The Pharmaceutical Industry hidden in the skirts of a hijacked United States of Pharma. I know this will ruffle some feathers but I love the fact that we have insurance reform from fierce to farcical. At some point, in the future two things will happen... first a National Mandate... Right now EVERY Insurance Reform bill is a Joke. Then when that is accomplished, The Insurance Companies will be our Alli not our enemy. When they get stuck with Trillions of Dollars of Collateral Damage YOU BET they will help us go after Pharmaceutical Monoliths. Trust me, over the years I have been on my soap box about the Autism Speaks animal they will be held accountable as well in this world or the next. Today we move on... we have more than 50 chances to get reform right... How many of us started fighting when Early intervention was a possibility? Now we are looking at teenagers in the eyes? TannersDad Tim Welsh

Bob Moffitt

I will never understand the role of Autism Speaks?

I know they are advertised .. and .. believe themselves to be an organization that "speaks" for parents of children diagnosed with autism.

However, "speaking truth to power" has never been one of Autism Speaks priorities.

Beginning with their original foray into the "politics" of autism .. where they supported a "compromise" Combat Autism Act bill that stripped out specific language that would have required critical research .. and .. continuning today .. where they inject themselves into STATE LOCAL POLITICS .. by supporting comprehensive autism insurance reform that is more beneficial to insurance companies than it is to the parents and children they pretend to speak for.

Isn't it about time Autism Speaks collaborated with PARENTS to CREATE a "one size fits all" insurance reform package, that Autism Speaks can introduce in EVERY STATE in the country?

Maurine Meleck

I remember, way back when, I was making calls to legislators to pass Ryan's Law. I did speak to Lori a few times on the phone.
She wouldn't even comment on biological treatments to be included when I brought it up saying the insurance companies would never go for it.(I didn't know, at that time, that AS had a hand in the bill altho she was not working for them yet).
Don't kid yourself, either. Ryan's Law is not so great. From what I understand, one has to jump through a dozen hoops to get ABA, speech and OT. It may be better than the NY bill, but not by much. I find it truly horrendous that some people, like Lori, stop at helping others when their own needs are satisfied, and then pretend that they really care.

jennifer polak

I could not believe my ears in Albany. Unumb made such an eloquent speach for autism insurance legislation. It could have been used to support the right bill. Then she stated that Autism Speaks did not believe it was wise to support the best legislation, but the law that might pass, instead. Then is the coming weeks they want on to bully the weak bull through, I do not want people appointing themselves as my kid's advocate and then asking for second best. I'd like to shove that one stale red suit of hers....


If you take money from Autism Speaks that makes you dirty, too.

John Gilmore

Autism Speaks has come to the point where they will agree to any language in an autism insurance bill, regardless of whether it helps us or not, as long as they can market it as a "win" for Autism Speaks.

Unfortunately Chris is exactly right. If Governor Paterson signs this dreadful bill that Autism Speaks championed in New York, treatment for autism will be held to a much, much higher standard than for any other health disorder.

Our already stressed community will need to put together experts, physicians and lobbyists to argue against the insurance companies in a regulatory process stacked in favor of the insurance companies. No other state has been encumbered with such an inherently insurance company friendly process.

What worries me is that this could be the new model legislation Autism Speaks will attempt to put in-place in other states. The Obama insurance legislation makes it politically impossible to continue with the $36,000 annual cap and the age limits to coverage that Autism Speaks used as their model up till now. This New York legislation is far worse.

Autism Speaks will pack up their bags and head off to the next state where they will they will agree to anything acceptable to the insurance industry and claim victory and then leave out families to deal with the wreakage they create.

They are a vampire sucking the resources out of our community, and the potential support from outside the community. They take those resources and waste them on efforts that will not upset the status quo in any way. Up till now it was just an immense waste. Now they are using the resources of our community to actively hurt us.

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