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Autism Speaks Undercuts NY Autism Health Insurance Reform

Action alert2 The following is an action alert from The Autism Action Network. There is an automatic email action alert below the jump including phone numbers to Autism Speaks to ask them to support the broadly embraced S6123 "Autism Speaks' bill contains vague language that doesn't compel insurance companies to cover any specific treatments, services or therapies. And would require any treatments to be approved by three separate state agencies. There is no time line for the agencies to act and no money to pay for staff. It is a recipe for inaction.:

Autism Speaks gravely jeopardized the chances of real autism health insurance reform in New York State last Friday by undercutting a bill supported by every national and statewide autism advocacy organization in the state by introducing into the legislature their own watered down bill written by a lobbying firm who represent both major health insurance companies and Autism Speaks.
Autism Speaks unilateral action undercuts Senate Bill S6123, the bill the autism community in New York has been working to pass for 15 months to get real autism health insurance reform.
The Community Bill This has no annual spending caps; no age limits, and requires coverage of medical specialists, and therapies including applied behavior analysis, occupational, physical and speech. In short the same kind of coverage that is provided for disorders other than autism.
In an unprecedented show of support, the Community Bill has been endorsed by groups as diverse as the American Medical Association and the American Academy of Pediatrics along with SAFEMINDS and Generation Rescue as well as the Autism Society of America and the Global and Regional Asperger Syndrome Project. And it has significant bipartisan support.
Autism Speaks has been approached dozens of times since the fall of 2008 about working with a statewide coalition. But they have steadfastly refused to work with anyone. And coming in at this late hour with a competing bill provides the legislators a perfect excuse to do nothing.
Here are some of the groups backing S6123, the Community Bill:
The Medical Societies of the State of New York (the AMA)
American Academy of Pediatrics, Chapter 2
NYS School Board Association
NYS Speech, Hearing and Language Association
NYS Occupational Therapy Association
Autism Action Network
Autism Action NY
Autism One
Autism United
Autism Society of America (National)
ASA, Albany Chapter
ASA, The Bronx
ASA, Hudson Valley
ASA, Nassau/Suffolk
ASA, Western New York
Foundation for Autism Information and Research
Generation Rescue
Global and Regional Asperger Syndrome Project
National Autism Association, New York Metro Chapter,
New York Families for Autistic Children
Project Link
Schafer Autism Report
Talking About Curing Autism
Upstate New York Families For Effective Autism Treatment
Upstate New York Autism Awareness
United State Autism and Asperger Association
No groups other than Autism Speaks are supporting their bill.

Autism Speaks' bill contains vague language that doesn't compel insurance companies to cover any specific treatments, services or therapies. And would require any treatments to be approved by three separate state agencies. There is no time line for the agencies to act and no money to pay for staff. It is a recipe for inaction.  A staffer for the Senate sponsor of the bill said on Monday that it could perhaps assist a parent's lawsuit against an insurance company.
At a hearing on autism insurance in Albany last October, Autism Speaks was represented by a staffer flown in from South Carolina, and another staffer who isn't a parent of a child on the spectrum. Whereas there were dozens of speakers, all parents, from across the state advocating for the Community-backed bill.
According to an Autism Speaks insider employee, $100,000 was budgeted for their New York lobbying efforts, the vast majority of that going to pay the lobbying firm Manatt. Manatt also represents a roster of the very health insurance companies who are stealing our premiums while denying our kids healthcare including Blue Shield of California, GE Insurance Solutions, Group Health Inc., HealthMarkets, Inc., National Health Insurance Company, The Medical Protective Company, and the MEGA Life and Health Insurance Company
We don't need a do-nothing bill that allows politicians to pretend they are doing something. We need state action to end discrimination against our kids and the theft of premiums by insurance companies.
What You Can Do:
Everyone: Please call Autism Speaks today and ask them to support the autism community and back S6123 the real autism health insurance reform bill
Phone: (212) 252-8584 ‚Ä®Fax: (212) 252-8676 
New Yorkers: Call the following two Senators, the key sponsors of the Autism Speaks bill, and ask them politely and respectfully to support S6123; real reform as if kids with autism mattered.
Neil Breslin, Chair Senate Insurance Committee,
Tel: (518) 455-2225
Tom Duane, Chair, Senate Health Committee,
 Tel: (518) 455-2451
Click on this link to send an email to your State Senator asking him or her to support S6123.

 Reply Forward



My sister got all the info she needed from here

She was going to a high aids area so it was harder to the get the correct cover

Expatriate Medical Insurance

Marlowe Futrell

They did something similar in Pennsylvania. It was a mess, but the initial bill finally was approved.

Autism Speaks parents celebrating vaccine court decisions?

Autism Science Foundation All three thimerosal cases are DENIED by Vaccine Court

Andy Ursitti
"It's a conspiracy !!!11!!!"

Just thought I'd go ahead and get that out of the way :-)
Yesterday at 3:09pm

JM, aw, your friends husband celebrated the vaccine court decision yesterday with Alison Singer, how cute! It's nice they were able to stay friends, even though Singer f@#ked the Wrights with barbed wire. He is also a member of Paul Offit Saves Lives on facebook. Charming.

Autism Speaks did fund the Denmark studies. Time to celebrate!! No funding for a lifelong disability, yessssss!!!!!

Paul Thorson (2001 and 2002): Risk Factors for Neurodevelopmental Disorders: MMR Vaccine and Childhood Autism ($105,300).

Used medical records in a group of children in Denmark to determine the change in rates of autism as a function of MMR vaccination."


And here's Autism Speaks money sucking frontman in Boston. Constant, constant in your face money raising efforts for Autism Speaks and all for what? It is very notable that Autism Speaks always seems to pick the wealthiest parents from the wealthiest towns to suck money out of other parents and this one is a great example. Also, this mom has her son's ABA education fully funded by her school district (Dover, MA.) and seems to have nannies watching her kids so she can run around the country pushing Autism Speaks all over the place while most of us put in 24 hours per day with our kids. Autism Speaks and their cronnies DO NOT represent or help the typical parent.


Don't worry...the Autism community is realizing that Autism Speaks is just a money sucking pharmaceutical loving do nothing organization. Except pay themselves very well with the money that our families (many who are struggling to pay for the cost of therapies, and treatments) raise for them.

They don't do anything in the Dallas area, except take money and leave. No workshops, no support groups, no local chapter. NOTHING!!

Change is coming, and it is through organizations like National Autism Association, TACA, and Autism One!

Autism Grandma

Re: "$100,000 was budgeted for their New York lobbying efforts, the vast majority of that going to pay the lobbying firm Manatt. Manatt also represents a roster of the very health insurance companies who are stealing our premiums while denying our kids healthcare".

Autism Speaks is like a double undercover agent for the CIA. They pretend to be an agent for "Central Intelligence Autism", when in reality they are undercover agents for the Vaccine and Health Insurance industries. They raise tons of money claiming that they are working to represent the interests of the Autism Community, whereas their actions and controllong board members are proving their alliances with the autism communities' greatest enemies. They protect thier funding by not only refusing to rock the boat, but also by supporting a bill that actually prevents children with autism from getting help. Introducing this alternate bill was obviously designed to prevent the Community bill momentum from moving forward.

Autism Speaks refuses to recognize the vaccine connection to autism and their official stance is to get all of the vaccines and follow that damn schedule no matter what.

There is not one mention of the word "Vaccines" as being involved in the cause of autism. If you will notice from the following information from the Autism Speaks website, anything and everything BUT vaccines are being researched with their massive funding budget of 33 million for 2008, of which only 2% is going towards vaccines.

Autism Speaks is right in there with the rest of the mainstream medical denial of the reality of Vaccines being the primary single cause of autism. It seems apparent to me that Autism Speaks is involved in the vaccines cover up propaganda.

"If questions remain, what do you tell parents when they ask whether they should get their child vaccinated?
Let me be clear: Autism Speaks fully supports childhood immunization and strongly encourages parents to vaccinate their children. Our vaccine program is one of our nation's most effective programs for preventing serious infectious diseases. If parents have concerns about the safety of vaccines, we encourage them to find a pediatrician with whom they can ask their questions and establish a trusting relationship. Working with their pediatrician, we trust that parents can make thoughtful decisions about their child's health."

"How much of Autism Speaks' research budget is devoted to studying vaccines?
The amount of funding we are devoting to research that is relevant to vaccines is only a small percentage of our overall research budget, about 2%. The bulk of our $33 million in research funding in 2008 is focused on identification of a wide range of genetic and other environmental risk factors, biological mechanisms, diagnosis and early detection, and discovery of effective treatments. We also invest a substantial amount of funds in developing resources for scientific discovery, such as the Autism Genetic Resource Exchange (AGRE), the largest private genetic data base in the world, and the Autism Tissue Program, a brain tissue donation program dedicated to autism research, among others. Hundreds of scientists are currently using these resources to advance our knowledge about the causes and underlying biology of autism spectrum disorders."

What a JOKE--This organization is refusing to recognize vaccines as simply a possible cause of autism, much less the reality that vaccines are the primary cause of autism.

This organization needs to be kicked out of our clubhouse. Autism Speaks does NOT speak for our family or for my grandson.


A.S. is appalling. It's the ultimate slap in the face having them believed to be the voices for families with children with autism.

Autism Speaks

Hello Everyone,

This past Monday, Autism Speaks endorsed New York State Senate bill S.7000, sponsored by Senator Neil Breslin. We want to make sure that you have all the facts about this autism insurance reform bill and have put together a set of Frequently Asked Questions that we hope will help. You can see here:

A.S. is a joke

Yes, unfortunately Jim this is a pattern with Autism Speaks. They are nothing but a money hungry organization where the main goal is to raise money for themselves. I wouldn't give a dime to Autism Speakss.

Robin Nemeth


Btw, the information I was distributing that evening on that public sidewalk was similar to this flyer

altho I have updated it periodically over the years. I believe that there was nothing whatsoever that a person could find threatening or offensive in what I was doing there that evening - that is, of course, unless they happened to be threatened by what I and many others see as the truth about vaccines.


Yes, it's a pattern with AS unfortunately. The board is corporate lobby to the teeth.

Robin Nemeth


I was standing outside of an Autism Speaks benefit concert with my husband in Cleveland a few years ago. I was on a public sidewalk politely asking people if they'd like information about vaccine safety, when I was told by the benefit organizers that I was "spoiling their evening", and that I would have to leave or else they would have me arrested. The police were called, but they told me that I could stay.

Ms. Goldberg, the local Autism Speaks chapter president, denies that this ever happened, but I have documentation in the form of the police dispatch report that proves that the police were called out. I tried, in the weeks following the incident, to post about what happened to me on local autism support organizations, but was censored each and every time.

You could say that I am very bitter.

Yes, Autism Speaks has a history of helping the pharmaceutical companies rather than individuals with autism. Why do you think they kept Alison Singer around as long as they did? All one has to do is look at the things she's said publicly to get a clear picture of what AS is all about. They've raised awareness simply so that they can raise more money. I don't believe that they have any interest whatsoever in helping individuals with autism.


I still have myself on Autism Speaks just to see what they are "up to" now. They are ridiculous. If the founders won't listen to their daughter, and see how their grandson has done so well, then they are just not worth dealing with. They should NOT be the people that get all the money and are "our voice". A friend of mine did the walk last weekend. She asked me for a donation. I told her that I would donate to NAA instead, and that I had serious concerns with what goes on at Autism Speaks. More and more of my Autie Mom friends are coming to this conclusion. Their Autism Speaks puzzle pieces are coming off their cars and being replaced with awareness ribbons. Wonder if Autism Speaks realizes this, or even cares. They are not HELPING!!!


A bit new to this site and previously felt Autism Speaks was a reputable organization. I'm appalled by there action.... Is this a pattern with Autism Speaks?

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