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Singer Confirms Autism Speaks Insurance Lobbyists Drafted Controversial NY Bill

Deal-or-no-deal By John Gilmore
 
In an extraordinary article letter published earlier this week in the Scarsdale Patch, Alison Singer, president of the Autism Science Foundation, confirmed that a controversial autism insurance bill in New York, S7000B/A1037A, currently awaiting signature or veto by Governor David Paterson was indeed drafted by insurance and pharmaceutical lobbyists Mannatt, Phelps and Phillips who are representing Autism Speaks' lobbying efforts in New York.
 
See Scarsdale Patch HERE

Despite the fact that Singer resigned from Autism Speaks and has gone into competition with them, she seems to suggest in her letter that the autism community should follow Autism Speaks’ leadership on insurance reforms. In her letter, Singer suggests that it is a positive thing that “The law firm that wrote the bill was hired by Autism Speaks.”
 
Say what? Singer’s extraordinary statements contradicts assertions made by staffers in the offices of New York State Senator Neil Breslin, sponsor of the bill in the New York Senate and Chair of the Senate Insurance Committee, and staffers for Joseph Morelle, sponsor of the bill in the New York Assembly, and Chair of the Assembly Insurance Committee, who have repeatedly asserted that they drafted the bill.
 
Mannatt Phelps and Phillips is part of a group of firms that represent more than 150 insurance companies including Aetna and Blue Cross Blue Shield of California, and drug giants Merck, Pfizer among others, and also represents Autism Speaks in many of their state-level autism insurance lobby activities.  See http://www.manatt.com
 
Singer also attacked Westchester County Legislator and New York Assembly Candidate Tom Abinanti for criticizing S7000B/A10372A. Abinanti is the father of a son diagnosed with an autism spectrum disorder, and has been working for autism health insurance reform for years.
See www.abinanti.com


Abinanti has been a vocal critique of S7000B/A10372A but has worked to pass another bill, A6888 which has been endorsed by the vast majority of autism organizations in New York, including the Autism Society of America, SAFEMINDS, Autism Action Network, National Autism Association NY Metro Chapter, and the Foundation for Autism Information and Research among many others.
 
Abinanti has argued that the insurance company bill would partially repeal non-discrimination law passed in 2006, and unlike other state legislation does not specifically identify any therapies that would be covered, it requires autism treatment to satisfy efficacy requirements that apply to no other health disorder under New York law and are the toughest of any law passed in any state, and the bill would prevent local governments from recovering some costs form insurers allowed under current law.
 
The New York Occupational Therapy Association has asked Gov. Paterson to veto S7000B/A10372A because they concluded that it would not allow coverage of occupational therapy, and the New York State Speech, Hearing and Language Association has released a statement saying that they do not believe that speech therapy would be covered by the bill either.
 
Singer is the president of the Autism Science Foundation which she co-founded with vaccine developer, promoter and entrepreneur Paul Offit. Singer is also a former executive of Autism Speaks, which has been aggressively lobbying in Albany for passage of  S7000B/A10372A.

If Singer is supporting a ghost written bill authored by Autism Speaks’, an organization she didn’t find sufficiently friendly to corporate interests, what does that say to the rest of the autism community about the New York bill?

Comments

P Motheral

Autism has destroyed my entire world. My daughter, now 19, is essentially catatonic, and unable to do anything for herself or to have the ability to communicate any fears, thoughts, needs.
I just want at this point to belong to an alliance of other parents in the same boat. To realistically find solutions to help our children by joining forces. Zenrookie@aol.com

terry

I love to explore I recently came across your blog and have been reading along. I thought I would leave my first comment. I don’t know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

Jake Crosby

I take back what I said before indicating this bill will at least being a step in the right direction - it will only be a step back!

kerbob

AS is on the side of fundraising.
--------
Wrong answer.

With the passage of the $875 million dollar Combating Autism Act Congress effectively established a combination in restraint of trade.

After neutralizing essentially all parent advocacy, Autism Speaks hi-jacked justice and commenced attacking our defenseless children on all fronts.

In the courts, in literature, in media, in states across the country, Autism Speaks has been a formidable foe of all vaccine-injured children.

As part of the CDC anti-litigation bloc of Autism research, the federal government found a willing and willful partner in Bob Wright.

Suggesting that fund-raising is the major interest of Autism Speaks, is to cloak years of abusive, Un-American conduct.

All for the protection of mass vaccination and the vaccine manufacturing drug companies.

Does Autism Speaks care?

In 'A Tale of Two Cities' when a small child has been run down in the streets by a rich aristocrat's horse-drawn carriage the Marquis climbs out to the steps looks down his nose at the poor and quips, "It's extraordinary to me that you people cannot take care of yourselves and your children. One or the other of you is forever in the way. How do you know what injury you might do to my horses?"

Vaccines have an equal importance to some as horses to a Marquis.

How dare our children ruin the vaccine industry?

Fund Razers

AS is on the side of fundraising. The goal is to keep the money flowing in while maintaining the illusion of helping the cause stated in the name. The money flow is predicated on remaining conservative and non-threatening. The few employees who have children on the spectrum and the founders have enough money not to need anything AS does - they can self fund. The actual productivity need not concern them.

Autistic Debris

Dadvocate

Trouble is that it is anything but transparent: AS are dis-empowering. They have wonderful lavish offices, highly paid executives but whose side are they really on?

Dadvocate

John - I don't think for a moment that your champions in Albany are naive of the process, only that those who expect a quick and total victory have completely unrealistic expectations. I'm sure the good and hard working advocates in Albany are traveling the same path of meetings and arm twisting that I did...but the reality is that trying to pin down and get follow on support (votes rather than platitudes) is really, really difficult. The fact that they have been pounding on the bolted front door while others slip in the side entrance supports my argument. Remember that no one emerges happy. Disgusted is more like it.

HC - Each State is very different. There are wide differences in their populations views on social supports and mandates on business. The deals vary by State depending on these factors. Whether you like it or not, it's true. That's why some families migrate to the "best" states (like CA, NJ, and WI) rather than stay put and get crappy supports. Getting legislation passed is the same thing.

Kim - Love your passion and desire to push groups like AS to keep on a responsible path but really, how much do you think the insurance lobby, the Chamber of Commerce, and other groups pay THEIR lobbyists to fight tooth and nail against additional mandates? 700K across all AS activities? Compared to the budgets their opponents have it's quite small. The Chamber alone has spent 150 million opposing health care and financial reform since Obama got elected. The insurance lobby likely a lot more. The money gets spent in D.C. and at the State level.

When our groups go to the legislature when it's in session we can barely get a motel room in the State capital, let alone meaningful face time with leadership...the lobbyists book their lodgings years in advance and have the ears of every leader's key staffers. That's how the game is played. Unless you "buy in" you're on the outside without a prayer. I don't like it either but absent meaningful campaign finance reform and stopping the revolving door between government and lobbyists, I don't know another way to get kids and adults with autism a seat at the table.

Media Scholar

Whenever a government has something dirty they wish to accomplish they usually turn to corporations.

The CDC vaccine-injury anti-litigation bloc includes a large number of violating entities and individuals.

This bloc is actually a combination in restraint of trade. It was cleverly designed to strip our needy vaccine-injured children of just Constitutional Rights including compensation.

If you desire to know more I suggest you read the Sherman Anti-Trust Act.

Stagmom

Open Secrets reports AS's lobbying efforts. $700K+ in 2009. That's a lot of blisters on the walks, isn't it? Does any other autism org have $700K to spend just on lobbying? And yet, autism continues to climb and few lives outside the well paid staff have improved. The facts are sad - AS could have been a contendah... Instead, we've been knocked out.

http://www.opensecrets.org/lobby/firmsum.php?lname=Autism+Speaks&year=2009

John Gilmore

Most of the principal advocates for autism insurance reform in NY such as Michael Smith, Tom Abinanti and Chris Petrosino among others have been working on New York insurance reform since 2004/5. We were partially successful in 2006. The advocates for real insurance reaform, as opposed to a quick bvictory that accomplishes nothing are neither new to legisltion or naive on how things are done in Albany. None of these advocates were every allowed to meet with the Bill's sponsors yet we knkow that Manatt had regular access.

Henderson

18 months is nothing (since A. Singer was at Autism Speaks). Legislation takes years (and she was undoubtably there during that time).

I'm with Dadvocate - don't be naive. MANY, MANY hands are part of drafting any legislation - and it takes years and years. What do you think lobbying is all about? Federal, State or local. Duh. So what? How do you think anything gets done? I'm not speaking Autism - Anything - farm bills, oil bills, coal industry, education bills, Clinton's welfare reform, Bush's faith based initiatives, or that evil bill that was written right after 9/11 that exempted vaccine corporations from litigation, - you name it. Many hands, many voices (from all sides) and finally a bill is written. No matter how imperfect and how vile I think it is.

Of course Autism Speaks (and god knows who else) had a hand - I would expect them to and want them to. What do you think their legislative arm is all about? I am thankful that they are trying and have a seat. We certainly don't. I really am quite confident that the legislation looks better because they were there. I mean it. Perfect? I'm sure it's not - but they would negotiate as best possible - it's called the legislative process.

To me, this is simply more Singer-bile. She's evil.

cmo

Did Autism Speaks start out fairly proper and then the board was basically taken over by Pharma ?

I don't think Bob Wright has any real power in the organization any more, but one would think he would believe his own daughter.

Autism Speaks is very good at walking in circles, carrying ballons, and looking in the wrong place (the search for the Autism gene...)

We need a group called Autism Listens...

HC

"Autism Speaks no doubt helped craft the best bill they thought would actually get enacted and produce some results."

That is BS because other states have crafted better "compromises" before the NY bill.

BJ

"Mannatt Phelps and Phillips is part of a group of firms that represent more than 150 insurance companies including Aetna and Blue Cross Blue Shield of California, and drug giants Merck, Pfizer among others, and also represents Autism Speaks in many of their state-level autism insurance lobby activities."


Isn't this akin to the criminals writing the penal code?

treegirl

Media Scholar,,, I would love to know what you know about AS. Where did you get your information on the origins of AS. Was it started before Katie's son was born?

JB Handley

"I am so unsure about what to do next with/for my son and they seemed a good source of information."

At times, AS is a good source of information.

But, when it comes to either funding research, discussing, or even mentioning what has been done to our kids and how to end this ridiculous epidemic, they are complete chicken-shits and wasting a lot of time, money, and energy.

JB Handley

Media Scholar

Autism Speaks is the political arm of the CDC vaccine injury anti-litigation bloc.

When you examine the origins of Autism Speaks and the depth of of their involvement with the CDC vaccine injury anti-litigation bloc, you will quickly realize that Bob Wright is part of a long-standing combination united for the sole purpose of restraining our vaccine-injured children's rights.

The fact that his own grandson fits somewhere in ASD is merely coincidental.

Not an MD

Hi, Wendy. Knowing what I now know about Autism Speaks, I would not use them as a resource for anything. I had such hopes for AS, considering its founders are the parents of the wonderful Katie Wright, who has a vaccine-injured child, and who does so much to enlighten the autism community on what actually transpires at IACC meetings, and more. I will not participate in fund raising for AS, nor donate money to them until they use their political and monetary might, which is considerable, to fund the real vaccine research that is needed (such as the vaccinated versus unvaccinated study, or a study showing that giving vaccines according to the CDC recommended schedule is actually safe for a child.) While some would argue the first study I mention would be ethically irresponsible (i.e. withholding vaccines would bring about an increase in vaccine preventable deaths and disease), I would argue that it is the second study that would be ethically irresponsible.

treegirl

Wendy,,,
I never give money to Autism Speaks. They don't use it to help the children as much as they use it for the agenda of a few arrogant people. I don't think that it was the intention of the founders for it to go in the direction that it has, but it does have heavy corperate ties instead of heavy sick children loving ties,,, IMHO

R Prasad

That means "Autism Speaks" is not an organization for the Autism kids welfare. "Autism Speaks" is a corporate fringe group that lobbies for health insurance companies and pharmaceutical companies. Shame on Bob Wright, Susan Wright and "Autism Speaks" for cheating Autism kids.

Dadvocate

I'm not involved with the NY legislation but can speak to the process of getting state legislation passed to end the discrimination insureres routinely practice against individuals with autism who seek basic treatment like ABA, OT, ST, PT, etc.

Unless utterly naive of the legislative process, one has to acknowledge that the efforts of getting a bill written and passed is via compromise between a lot of stakeholders. Legislative revolutions are exceedingly rare. Incrementalism is ingrained in the process because legislators and policy makers by nature seek middle ground. No one emerges from the process satisfied with the result. Autism Speaks no doubt helped craft the best bill they thought would actually get enacted and produce some results. "A camel's nose under the tent" is meaningful.

We got our teeth kicked in for over 5 years here in Illinois by the Chamber of Commerce and the insurance lobby. We got exactly nowhere. The telegenic felon and supposed people's champion ex-Gov. Rod Blagojevich lifted not one finger to help. We were lucky though that some powerful state legislators who wanted to right a clear wrong were able to make the business and insurace folks cede some ground (not enough though because "carve outs" for self insured and small plans resulted in only 17% of those who should qualify for reimbursement getting coverage.)

I remain ticked off at the current state of coverage but understand that "It's not perfect but it's a start" is the only way to go unless you want a bill that dies in committee or is D.O.A. on the floor.

ASusan

Sickening.

Autistic Debris

HC

"Since Singer left and is "in competition with" AS, Singer could be making assertions to make AS look even worse."

No such motive is apparent in her comments - she is supporting them.

http://scarsdale.patch.com/announcements/assembly-candidate-should-support-autism-insurance-legislation

HC

Since Singer left and is "in competition with" AS, Singer could be making assertions to make AS look even worse.

Wendy

Please forgive my ignorance on this topic. I am the parent of a newly (3 months) child and live in NJ (but am moving to NYC in Oct). I was under the impression that Autism Speaks was a good group. Either I am reading this wrong or I was mistaken about them. I am so unsure about what to do next with/for my son and they seemed a good source of information.

Autistic Debris

Autism is a corporate/state induced disaster and Autism Speaks too often speaks on behalf of the disaster and not our children - it really is as if they are what they say they are, the advocates of autism, disabling our children and our communities and leaving everyone ever more helpless as the state and the corporations walk away. But why, incidentally, is Singer still party to their business more than 18 months after she allegedly left?

Let's start having some truth.

Media Scholar

Since Autism Speaks has already attacked our needy children in so many other states it's slightly interesting to note that New York is years behind the dubious deed.

The Autism Speaks insurance legislation has been discriminatory, abusive, and features wholesale child neglect and abandonment.

The stooge tokens who've had the misfortune to have their child's name attached to these industry-friendly insurance bills have nothing to be so bold about.

"It's not perfect, but it's a start" they all say.

Those words are well-marked for the time when reality sets in and the name-sakes vaporize into thin air. There's no start to slamming the door on our needy children. There's a name for them - Autism Speaks' "paper bag" families.

Insurers want protection against vaccine-injured children. They get it because they actively fund and strongly support mass vaccination policy-making.

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