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False Promises Autism Insurance Bill Fails in NY Following Grassroots Opposition

NY Rally “It’s really unfortunate that Autism Speaks didn’t join in with the rest of the autism organizations in New York 18 months ago to press for the passage of A6888,” said Smith. “If they had, perhaps we would be celebrating the passage of a real reform bill instead of merely dodging a bullet, and a bullet aimed at the autism community that was paid for by lots of moms walking lots of miles.” From the Autism Action Network:

New York Governor David Paterson vetoed Senate Bill S7000b yesterday, the bill longtime autism insurance reform advocates dubbed the “worse-than-nothing” autism insurance reform bill. “This is a real victory for insurance fairness, said Michael Smith, Chair of the Foundation for Autism Information Research, and a leader of opposition to the bill, “We owe a big thank you to the Governor who listened to the people who are affected by this legislation, and who have been working for real autism insurance reform for years.”
 
The bill would have repealed existing anti-discrimination language hard won in 2006, and required that any treatment for autism meet a standard far higher than that required for any other health condition under New York law, or in any other state. “This standard if passed was so onerously high that we could identify no treatments that we were certain would be covered,” said Marcia Roth, a Budget and Policy Analyst with the Autism Action Network, “And it would have created a dangerous precedent that could serve as a model for other states.”
 
“Costs currently paid by insurers would have been shifted to county and school district taxpayers, said Tom Abinanti, a Westchester County Legislator and Democratic candidate for Assembly in the 69th district (Greenburgh, Pleasantville and parts of Yonkers).
 
A coalition of more than 30 autism organizations (HERE) had been working to pass another bill, A6888, last year when S7000b was suddenly announced at an Albany at which the only non-legislative people present were representatives of Mannatt, Phelps and Phillips, a national lobbying firm, who represents more than 100 insurance companies, hired by Autism Speaks to lobby on their insurance efforts. Persons familiar with Autism Speaks lobbying efforts confirmed that Manatt was paid at least $100,000 by Autism Speaks.


 
Former Autism Speaks executive Alison Singer revealed in a letter to a Westchester County news blog (HERE) that Manatt employees drafted S7000b, contrary to assertions made by staffers for the two key legislators who introduced the bill; Assemblymember Joseph Morelle, Chair of the Assembly Insurance Committee, and State Senator Neil Breslin, Chair of the Senate Insurance Committee.
 
Despite a last minute television and radio blitz paid for by Autism Speaks, a grassroots coalition of autism organizations was able to persuade the Governor that New York would be better off without S7000B.
 
“It’s really unfortunate that Autism Speaks didn’t join in with the rest of the autism organizations in New York 18 months ago to press for the passage of A6888,” said Smith. “If they had, perhaps we would be celebrating the passage of a real reform bill instead of merely dodging a bullet, and a bullet aimed at the autism community that was paid for by lots of moms walking lots of miles.”
 
 

Comments

John Stone

The belief that autism is a "neurological variant" is by now purely ideological and without any scientific basis. In 2006 Francis Collins (then head of the Human Genome Project and now head of the National Institutes of Health) told a congressional committee that the rise in autism had to be environnmental, and could not be purely genetic because the numbers were rising too fast. True the IACC shilly-shallies and shamelessly wastes everyone's time but the truth is inescapable.

http://www.genome.gov/18016846

Jay Whipple may also be interested in th results of this paper:

'Urinary metabolic phenotyping differentiates children with autism from their unaffected siblings and age-matched controls.'

http://www.ncbi.nlm.nih.gov/pubmed/20337404


jay whipple

I feel truly sorry that people think being Autistic is an illness. I say being Autistic because autism (small "a") is the neurological variant. Being Autistic (big "A") is not being "ill", suffering or any other word you may think of along those lines. Autistic individuals such as myself have suggested wording like "person with autism" insinuates that autism can be somehow separated or eliminated from ones life. This is simply not the case because (for whatever reason, and contrary to the publics perceptions..science does not know)autism is hard wired into out brains. Saying "person with autism" says also that yes it *is* a part of the individual albeit a small or insignificant part. This is also not true...

As an Autistic (adjective) person I realize that some of my behaviors, mannerisms, form of communication, self expression or ways of understanding the world and interacting with it may seem foreign and possibly upsetting to some. I *am* for allowing the (Autistic) individual to indicate what methods they feel would help to increase their interactions (if they choose to the level they feel comfortable) wether its communication methods or what have you.

I am *not* however in support of an ill informed public (at large as this is an INCREDIBLY general statement and I do offer my heartfelt apology to anyone whom this may not apply to) making judgements or "curing" (to their standard of what is "normal" without regard for the Autistic individual, their comfort, abilities or desires).. for a "person with Autism" (noun.. also "person 1st) which is incorrect as i stated because autism by nature is the person and it colors how that person sees and interacts with the world)...

I whole heartedly and with profound gratitude wish to support and thank individuals who realize that as Autistics (much like those in any other paralell group in society eg GLBT, and various other minorities) we to deserve support and nurturing to whatever end the Autistic (individual) makes clear they would like to interact with society in. I would like to thank the parents and members of society who realize the effort we as Autistics put fourth when we want an outcome and than as a society choose to support Autistics so that we to may participate to our level of comfort as much or as little as we desire (and for those same members of society not diminishing us as individuals for whatever that level may be)..

I can understand that some Autistics and families feel that they may benefit from some services that may not be covered under existing health care policies in NYS (as well they should be for the individuals who would cooperatively seek to avail themselves of those options).. *however* any piece of legislation must be very very carefully reviewed.

Not pushed for by 1 particular group (AS, et cetera), or the families of Autistics or even medical professionals. I firmly believe (as my decendent did), that both an understanding in government, a way to impartially discuss & resolve a conflict (in this case, legislation) while insuring the safety (the proper word escapes me at the moment) literally and figuratively of those involved with maximum benefit allowed to the people..

In summation I would hope that Autistics, Families, Politicians ETC, may some say come together to mutually approach any situation (no matter what that may be, or no matter the particular groups involved) that is effective for the establishment while allowing an extreme majority of the benefits of such situation to fall on the people.

I would like to apologize if my commentary may at times not make sense to a particular person reading it at any given time but because I am Autistic not everything i may think would necessarily transfer to the page as a properly constructed sensical and logical statement or group of statements.

That being said, I would like to thank those responsible for striking down such poorly thought out and written legislative proposals. However I would ask: What will it take for a person (or society) to inact a non-biased (in any arena) legsilative instrument with serious thought given to wording and composition while at the same time also seeking (by any means) the value for EVERY affected citizen (no matter where you hail from)is proper benefit where it belongs. In the hands of the people and most assuredly not bought by money from the pockets of the politicos. A law written to protect X, should also consult X to ascertain what X desires to obtain from that. - J. Whipple

Garbo

After wasting so much donor money with no results, maybe the wing of AS that wants to parlay with pharma and insurance lobbyists will finally get banished by the wing of AS that wants to help kids.

Erina

The Georgetown University Center for Children and Families is conducting a survey that will help policymakers understand how health reform is impacting the health care coverage of children and young adults. If you know someone whose child was denied health insurance coverage due to a pre-existing condition or had a pre-existing condition excluded from coverage, or has an under 26 year old child who is uninsured, please ask them to take this quick survey http://www.surveymonkey.com/s/LGC2Q9R?ak_proof=1

Less talk, More Action

Dadvocate and Michel seem irrational and have obviously not read the bill. They are basing their opinions on emotion without the facts. Michel is correct in saying you will never have a perfect bill, but, why did the autism speaks not join the other groups when we had all the momentum to pass the best bill in the country. This was a bill that was a well thought out mainstream, comprehensive bill, a bill that would have passed because it saved the state money and would not raise insurance rates more than 1%.

Ellen says no bill would have passed. I disagree. The Gov said fiscal implications and this is true, but, he knew it was discriminatory and stood on principle. The sponsors are democrats and the Gov is a democrat. The Gov is the poster child for term limits. His decision was not based upon getting reelected.

Dadvocate wants to attack Mr. Smith who met with the legislators, wrote the good bill and found majority party sponsors to introduce it. Mr Smith, Mr Gilmore, legislator Abinanti and other NY parents educated the masses that this bill is "worse than nothing". These are the real DADVOCATES.

Those who want to feel good by wearing a autism pin and walking at a AS walk to feel good in the name of autism DID finance that bullet aimed at their kids. Thank god we had a few dads and moms with the testicular fortitude to effectively strategize a win in a David and Goliath battle against all odds and prevail in avoiding a insurance discrimination policy that would not be untangled for years to come. A couple of these same dads worked to pass meaningful legislation 4 years ago.

Don't ever forget what autism speaks did in NY and PA and other states. When you collaborate with them you give them credibility and cover. If our community does not make legislative advocacy a priority we will be playing this type of defense for the foreseeable future.

Bob Moffitt

@ Dadvocate:

I am very sorry that you have experienced so little success from your own "grassroot" activism. I have lost many "grassroot" battles in my lifetime .. so .. I am very familiar with the feeling of getting my ... "teeth kicked in year after year by insurers and the Chamber to get the bill we wanted passed"

Having said that .. you stated your disapproval of grassroots efforts stems from the failure of your own .."half a decade" .. involvement .. as a grassroot's "activist".

My friend .. I am seventy years of age .. my grandson regressed eight years ago .. so .. to me .. "half a decade".. (five years) hardly qualifies YOU to lecture ME on how it "feels to have your teeth kicked in year after year".

Perhaps these "youtube videos" .. provided by a "GRASSROOT'S MOM" .. who has taken the time .. and .. made the effort .. to learn the SKILLS required to post this single "youtube" video .. of a recent .. admittedly sparsely attended .. Autism Action Network "rally" ... not in Albany .. the NYS Capital .. but .. in mid-town manhattan .. the very heart of NY City.

http://www.youtube.com/watch?v=siL-npI_g18

This youtube video presents the reasons why the Autism Action Network .. a "grassroot movement" .. disapproved of an"insurance reform" bill .. that was overwhelmingly supported by NY State Legislators .. and .. more importantly .. how the Autism Action Network "grassroot" activism .. possibly influenced the NYS Governor to VETOE THE BILL.

Yes .. those in attendance were greatly disappointed that "major media" did not cover the event .. but .. in spite of their effort to IGNORE us ... and .. to the consternation of those NYS Legislators that supported the Insurance lobbyists .. the AUTISM ACTION NETWORK .. of "grassroot" members .. WON!!!!!

My friend .. AS THE FOUR YEAR OLD .. "COMPROMISED" COMBAT AUTISM ACT (CAA) SHOULD HAVE TAUGHT YOU .. "COMPROMISE" IS JUST ANOTHER WORD FOR SURRENDER.

John Gilmore

Dadadvocate,

I think you need to read and understand the bill that was just vetoed.

First it was written by insurance company lobbyists

All treatments would have to be "evidence based" "clinically proven" and "peer-reviewed" to be considered. Can you identify one therapy that insurers concede meet this standard? There are none. And I think it is a safe bet that if this bill passed in NY you would have seen the same language appearing in all new autism insurance legislation. It would make legal separate but unequal.

The OTs asked for a veto, the STs said it wouldn't pay for ST, the staffers at the sponsors office conceded it wouldn't pay for PT.

Anyone of four agencies could have vetoed coverage for any treatment, and these are agencies that have a direct budgetary interest in keeping down the treatment costs for the clients they manage.

This was all about appearing to do something while removing the possibility that anything could ever be done.

The people working to get a veto are all longtime advocates in the NY insurance wars. The advocates for the bill were either paid to do so or grossly and deliberately mislead by the bill's proponents.

This wasn't a case of half a loaf or a quarter of a loaf on the table this was no loaf combined with an effort to steal the oven.

Kim in NYC

Eleen, the way the NY bill was written, if passed families with autism would be discriminated against more so than before and subject to a standard of proof for treatment that no other illness is required to meet. It appeared likely that the things you get covered in PA would not be covered in NY - incl. speech, OT, PT and quite possibly even ABA. This was not about coverage for treatments some may think of as alternative - this bill would have denied services that are almost universally agreed upon to be appropriate to help kids on the spectrum. This bill was not going to end medical discrimination against autism - it would worse discrimination. And it was not just parents who were concerned. Professional organizations also were concerned that basic services would not be covered for children with autism. The New York State Occupational Therapy Association called for the bill's veto and the NYS Speech, Hearing and Language Association also expressed to the Governor their belief that speech services would not be covered. In short, this bill - written by insurance industry insiders - was nothing more than a thinly-veiled attempt to deny access to services for children with autism rather than provide protection to those children.

SNCCLA

The huge number of kids improving and totally recovering via AC CHELATION is a direct indictment of vaccines, yet Autism Speaks totally exonerates them, accepting big pharma's "Tobacco Science"

Plus the massive paydays for the execs makes this organization totally suspect in my eyes.

Ellen Cicconi

Apparently, Gov. Patterson vetoed the bill because of the "fiscal costs" of autism insurance, which means that no autism insurance bill was going to make it to law this year.

And to "Exhausted" -- as far as what is covered by the PA law -- OT, ST, PT and ABA. That's the way it has been working for my family this year. Regarding the other things you would like to be covered -- my understanding of autism insurance mandates is that they should end the discrimination against patients who have an autism dx. If a typical child whose parents have insurance has GI problems, etc., insurance would cover tests and treatment, wouldn't it? So the point of the autism insurance mandate would be to ensure that our kids aren't denied access to the same services that others get if we have insurance. Insurance doesn't pay for experimental treatments for any illness or disorder. Autism would not get an exemption to that rule.

Bob Moffitt

@ Ginger:

"This is cause for victory. It is a shot across the bow to the elitist power brokers. The sad truth is that our kids and our loved ones have been mistreated because... well because government and corporations can get away with it. This signals that the time for that is coming to an end, and families are gaining power.

You are absolutely right in that we need help NOW. But selling our loved ones futures, as well as the futures of those yet unborn, to get a pittance today, is not a loving or kind or wise thing to do."

I wholeheartedly agree. Personally, I am greatly encouraged by this grassroots victory .. that defeated a bill written BY .. INSURANCE COMPANIES .. FOR .. INSURANCE COMPANIES.


polliwog

Autism Speaks .... Don't support them for nothing... Give all money to ARI.

And........... again........ the problem is that there are too many kids with the label Autism which to the medical community is a neurological disorder that is not treatable. Do not let your child get labeled. Demand medical assessments or claim negligence. That is all there is to it. Once we have all shown proof of our kid's metal issues, GI, immune.. etc, and demand coverage and threaten negligence, we will see better treatment of our kids. Go after those who peg label to your kid without medical assessment.

Dadvocate

Ginger - Enthusiasm and passion is great but it doesn't get bills through the statehouse maze and signed into law. I too thought legislators would "do the right thing" when I started trying to get our bill enacted over a half decade ago. I got "schooled". I prefer to think that I now employ more realism along with my passion to achieve results in advocacy efforts. The lobby on the other side (Chamber of Commerce/Insurance) is huge, well funded, and plays hard ball. Ask your lead negotiators.

Maurine - I understand the issues. You'd better really like what you have today because my sense is the odds of you getting a bill through an insurance committee who's Chairman's own bill you just scuttled are about nil. I hope I'm wrong but I think this move will hold up progress on a comprehensive, broader national solution.

Maurine Meleck

I think what some of the commenters don't understand is that the present autism insurance bill that they alreqdy have is better than the one that AS and insurance companies were promoting and the one that was just vetoed.
Congratulations to all those who worked so hard to get this bill strangled and thanks to the NY governor for his veto.
Maurine

Ginger Taylor

Michel and Dadvocate,

I don't share your pessimism. Look around... things have changed. We have an awake populace who has had it with government and corporate cronyism and collusion and with the people paying the price for all of it. And what is true on a national scale is much more true in the autism community.

The autism community is a sleeping giant that is waking up. There are still some people stuck in their entranced positions who have not seemed to notice that the ground has shifted under them, and those people are loosing power because they are not paying attention.

Parents are not taking direction from those with interests in opposition to their special needs children.

It is now the time that those in power live up to their obligation to serve the REAL needs of their constituents and their customers, or loose power and market share. Because the number of people who are buying the PR and BS is shrinking by the day.

Autism parents are finding out the power that they have. The momentum is rolling in our direction and it is only picking up speed.

This is cause for victory. It is a shot across the bow to the elitist power brokers. The sad truth is that our kids and our loved ones have been mistreated because... well because government and corporations can get away with it. This signals that the time for that is coming to an end, and families are gaining power.

You are absolutely right in that we need help NOW. But selling our loved ones futures, as well as the futures of those yet unborn, to get a pittance today, is not a loving or kind or wise thing to do.

This is not the end of the small chance for kids in NY, this is the beginning of a big chance for all Americans with autism.

cmo

A bit off topic but:

PANDAS is another area to investigate with your children... another mother's comment below.


http://www.latitudes.org/forums/index.php?showtopic=7836&st=0&p=63796&hl=+pandas%20+pitand%20+natural%20+therapy&fromsearch=1&#entry63796

***********

My understanding (limited) is that the main problem with PANDAS/PITAND is the inflammation piece. The inflammation allows a breach in the blood-brain barrier, which allows antibodies to cross and interact with the brain (normally, the blood vessels in the brain only allow select nutrients to cross the BBB to get to the cells- far more selective than in the rest of the body). This can happen in hyer or hypo immune kids.

The other piece I am getting is the idea of molecular mimicry, which says that infectious molecules can change their surface to look like parts of our body, in hopes that the body will not attack them. In the case of PANDAS, the strep has changed itself to look like the basal ganglia. The body then makes antibodies to the new strep - and those antibodies attack anything that looks like the new strep - including the basal ganglia.

IVIG adds new antibodies to the blood - thereby reducing the concentration of old antibodies. For some reason, IVIG calms down inflammation (I really do not know why), which closes the blood brain barrier. The new antibodies help those with hypoimmunities to fight off any nasty things in the body, and helps those with hyperimmunities to fight things off so they don't have to continue to produce antibodies (I think that is how it works).

Prednisone also helps to calm down the inflammation to close the Blood Brain Barrier, but does not introduce the new antibodies like IVIG does, and its effects are often temporary.

Also - add to this mix- some kids are having these reactions as a result of something OTHER than Group A strep (eg: mycolasma, lyme)... so their strep tests are going to be negative, with low titers, even if they have good immune systems.

Not sure how much of that is accurate, but that is my thinking at this point in my PANDAS journey.


Anne McElroy Dachel

Legislators who refuse to address autism as a health care emergency are merely adding to the impact this epidemic will have on everyone in New York.

Why aren't they moving mountains to help kids with autism? Why is there no interest in recovering them? Why aren't they demanding to know what's happening to thousands of NY children?

Why is their biggest concern saving money and doing as little as possible?

These legislators will have a lot to answer for when NY is left with the eventual cost of supporting a generation of adults with autism who aren't there now.

Anne Dachel
Media

Michel

What I know is we got nothing. Wait for that perfect bill that will never happen. Thousands of kids and families need help TODAY!!!! Insurance does already cover many of the costs but you can't expect even insurance companies to cover treatments that are not proven. ABA is they key and many school districts do not provide it and now it will not even go through insurance. What a shame.

Dadvocate

Better luck in Albany next year, and the year after that, and the year after that. I'll check back in about 5 years to see if families are better off in NY State by spiking this bill and getting "nothing" in return. Like it or not, the Chamber of Commerce and insurance lobby control votes. You need votes to pass legislation and even get bills to the floor for a vote, rather than having them strangled in committee...which is a likely fate nationally for bills like A6888, Mr. Smith's notions of what might have happened notwithstanding.

I sincerely wish all in NY the best getting past those formidable barriers with their "grassroots" efforts. Maybe they'll be more successful than we were in my State as we got our teeth kicked in year after year by insurers and the Chamber to get the bill we wanted passed...but I doubt it. But at least we got a bill that starts the process of ending insurance discrimation...rather than nothing at all.

What folks in NY and many in PA fail to understand is that State level efforts set the table for a Federal mandate that will trump all State law. Throwing out the good and hoping for the perfect slows down the process and harms our community.

Exhausted

Cindy:
So, just curious what treatments for autism under Pennsylvania law will insurance pay? Since they all say there are no treatments for autism? Unless it is this behavioral stuff???

To all others:
What do you wish or need insurance to cover?


What I needed was?

Will they pay for a scope to go up in the bowels and look for inflamation, or down to check for acid reflux?

Will they pay for a physcial therapist?

Will the pay for psychologist?

Will they pay for a psychiarist?
Speaking of them - most will not accept insurance to begin with - did you all know that?

Will they pay for a certified nutrientousnessssss to come in and educate the parents on either a low carb diet or gutein/cassien free diet?

Will they pay for a speech thearpist?

Will they pay for blood test to check on various metobolic problems like B 12 levels, L carnitine levels?

Will they pay for hybolic whatever when the parent claims their child just stroked out?
or any stroke treatment at all - perhaps blood thinners even? Will they pay for CAT scans of the brain or an MRI?

Will they pay for EEG if the child is supected of seizures?

Will they pay for a neurologist?

WIll they pay for EKG or echo heart stuff to see if there was heart damage, esp if they are having heart palpatations/chest pains or aniexty attacks?

Will they pay for IVIG treatments if the the child comes down with Kawasaki before it comes down with autism or a mood disorder?

Will they pay for blood test to check SED rated or CPK rates?

Will they pay for a muscle biospy to test for a mitochondrial disease?

Will they pay the peditrician twice a week for very regular visits to get antibiotics for ear infections/sinus infections/strepococcus infections/pneumonia or a mysterious return of a high fever virus?

In my family's case Regular insurance will pay for all of these -it however; all hinged on our DOCTOR! How do you get pass that? Exhausted

Christine

http://assembly.state.ny.us/leg/?default_fld&bn=S07000&Summary=Y&Actions=Y&Votes=Y

Here is your proof!

Gayle

The real losers in all of this political game playing are our children who are suffering from an illness! The families meanwhile are desperately searching for answers, not corrupt back room dealers masquerading as advocates. Thankyou Governor Patterson for seeing through it.

Steve M.

I'm with Michael B. There's nary a peep out there about the Governor's veto.

Cindy W.

So should we praise autism speaks for going against the will of the grassroots organizations to the point where they had to shoot down their own bill? Enough with the political correctness, please. Call them what they are.

Michael B.

Is there an official cite to this? It is not being reported anywhere as of 7:30 am on 10/21.

Managing Editor

This isn't about Autism Speaks bashing - but about what was best for the people of NY facing autism. We do hear of the strongarm tactics across the country - that comes with the money and politics unfortunately. Such is the American way. Money talks, but in this case, it did not SPEAK. Eyes on the prize - the PEOPLE with autism. Not "The win." At least not in the trenches.

Cindy W.

I don't know why anyone would be shocked about this. They did the exact same thing here in Pennsylvania, which we were pretty vocal about. I warn EVERYONE working with Autism Speaks on legislation that they are nothing more than a wolf in sheep's clothing. Pennsylvania's own Speaker of the House smacked them down in an open letter to Bob Wright after the bill was passed. But the sheeples keep drinking their kool aid and walking for them.

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