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Ask Why Autism Speaks' NY Health Insurance Bill Is So Murky In Terms of Care

Not_covered_cheapcheap We understand that A1037a/S70000b, the Autism Speaks endorsed insurance bill for autism, is likely to pass in New York. It's verbiage requires that any approved therapies must be "evidence-based, clinically-proven, and peer-reviewed,”  a standard used in no other state and for no other health disorder under New York law. That sounds a lot like ABA and pharmaceutical drugs, and drugs are already covered for most of our kids. Does this mean GI testing and treatment is excluded? What about immune-related testing and treatment? What about occupational therapy, speech therapy and physical therapy?

Our friends in New York have asked several people at Autism Speaks, but have been unable to secure an answer as of this writing.

The alternative bill was endorsed by numerous autism organizations from the NAA-NYC to GRASP (to give you an idea of the wide reach of help it included for people with autism) but did not have the lobbying power (those walks raise a lot of money) of Autism Speaks or the safety (for the insurance companies that is) of only having to provide the most basic, and some would say insufficient, care.

Autism Action Network and the Foundation for Autism Media and Research have been leading the charge on getting real autism reform passed with different legislation A6888/S6123.
They are asking New Yorkers (and only New Yorkers please) to call Speaker of the Assembly Sheldon Silver today at (518) 455-3791 and politely ask what autism therapies are “Evidenced-based, clinically proven and peer-reviewed.”

And for you folks not in New York, why not ask Autism Speaks the same question at (212) 252-8584.


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Sadly parents continue to be brainwashed by Autism Speaks.

Kym Grosso

Here's a link to a fact sheet what we have in PA for comparison.

Honestly, there was a fight in PA with the bill AS was advocating. It was a real mess. Our local autism groups took to calling and writing, making sure legislators knew which bill we supported. And it worked.

Make no mistakes that the insurers are probably lobbying against any bill to cover autism. Even with Act 62 in PA, certain insurers are exempt.



The huge sin is when I took my toddler, who had been constipated for days and days, to the pediatrician and he told me that was "just his autism." He's holding it because that's what autistic kids do, not because he had a medical problem. And, if I wanted to see a real live freaking doctor to treat his MEDICAL problem, that's not covered under insurance.

Maybe my peer-reviewed, scientifically approved ABA provider can train him not to scream when he's in pain. Sounds like a plan. At least my insurance will pay for that.

Julie Leonardo

Here is the fact sheet regarding Illinois coverage:

Julie Leonardo

It just kills me that we can't have a "choose your own therapy or treatment" option. Just give us a "spending limit" and let us choose the therapies we want. Don't get me wrong, ABA is wonderful, and this year in Illinois, it is covered up to $36,000 beyond what your insurance policy's coverage is annually. It may actually be multiple type of therapies that are covered, but certainly not biomedical. I am one of the "lucky" ones in that my autistic daughter also has Down Syndrome, so she is entitled to PT, OT, and ST. So all of her delays are covered in therapy. I feel for those who don't have such luck. However, there are so many therapies I'd like to try with her, but I have to pick and choose and scrape up the pennies while trying to convince my hubby that all of this is worthwhile to do. If we had coverage for homeopathy, biomedical, NAET, etc., I think my hubby would be on board to try just about anything. It certainly would save a TON of marriages as Autism is so financially draining. I know, I am speaking to the choir, but meds and ABA aren't enough for the more severely challenged. Just my two cents' worth.

Not Fooled By These Fools

I agree with you 100% "Won't Get Fooled Again." Here's our state "Stoolie." In her case I think it's the "too egotistical" to care. Everyone should find out their Autism Speaks state Stoolie and call them out for what they are--USELESS!

Won't Get Fooled Again

Autism Speaks is nothing more than a genetically-linked part of the CDC cover-up.

The insurance industry is largely to blame for forcing "bargain basement" health care on our children. Shoot infants and toddlers with dozens and dozens of doses of vaccines that have Thimerosal in them.

Of course, the crazed policy of mercury-poisoning American children has had blow-back.

This is part of the reason why Autism Speaks was invented and funded by the federal government.

All Autism Speaks needs is one stoolie per state. They pin a completely limiting, completely discriminating bill to their chest and shove them into the halls of the state legislature.

The stoolie carrying the bill is either too stupid or too egotistical to understand the Autism Speaks bill is designed to screw over services for Autistic boys and girls.

If Autism Speaks can't tell us the truth about what happened to our kids on vaccines, are they in any kind of position to dictate a single idea in terms of treatments? (No)


Could we do an online poll of some kind to rank the following for credibility ??

1) British Petrolem
2) Autism Speaks
3) the vaccine industry
4) AoA

Maurine Meleck

This bill differs little from the SC insurance bill that went into effect in 2008. It mostly covers ABA, and some speech and O/T. It also does not encompass all companies(for example-those with less than 50 employees are exempt from the law) Few people take advantage of it because the number of qualified therapists are very limited.. Like New York, most of the states with some autism coverage now--------make one climb so many ladders that ever reaching the stars is impossible.



The frightening this is, that when I made my calls today, no one could tell me what treatments meet this standard, possibly because it hasn't gone through the four agencies who will be responsible for authorizing it. Which, I think, means nothing will be covered. Scary, scary, scary...


so if I understand this correctly under this bill coverage for off label use of SSRIs in young children would end in NY since they are neither clinically proven or evidence based...methinks they are shooting themselves in the foot ...ouch!

Are co morbid condition still covered?
My son is being treated for an immune dysfunction. He is on an antiviral (and it's working) that covered???

Stagmom for Michael

Michael, those are all wonderful tools for our kids - but are any of them medical? They belong in a classroom, not a hospital or doctor's office. Imagine if docs only prescribed migraine sufferers guided imagery or other psychological methods to manage their pain rather than medical treatment.

I spoke with a Mom of a newly diagnosed toddler in Philly whose pediatrician did not know what ABA was. They are not equipped to handle the school portion of our kids lives. It's not what they studied or know or should even have to learn as peds.

Should math tutoring then be dictated by a health insurance company to the exclusion of medical care?

It's frustrating. No one is saying ABA and it's cousins aren't very much worthwhile - but the only approved treatment under medical insurance? I don't get it.

Thanks for commenting.



Just wanted to let you know that we've shared a link to your post here and have asked our readers to weigh in over here, too.

Michael Friga

As for "evidence-based" I suspect they are referring to something like the National Standards Report

Which includes interventions like: Integrated Play Groups, Social Stories, Naturalistic Teaching Strategies, Peer Training,TEACCH Schedules, ABA & Discrete Trials.

Bob Moffitt

Under the AS bill .. how difficult is it going to be for a treatment, such as .. hyperbaric chambers or chelation .. to become "evidenced based, clinically prove and peer reviewed"? I suspect these types of treatments will never satisfy the standard they have raised.

The AS bill also creates a "new four-agency review committee that would have to approve any treatments" .. which seems to me a very difficult barrier a treatment for autism must overcome that other disorders do not have to confront. In other words .. what is the likelihood all four agencies are going to approve some new, very expensive treatment?

If I were an insurance company .. I couldn't ask for anything more friendly than AS bill.

Carolyn Gammicchia

Can someone please tell me what has been deemed a "Medical Necessity" for ASD? ABA is a psychologically based intervention that has to be overseen by a BCBA with a Ph.D. for most states to covered it. It's covered under mental health, not a DD dx. So I'm curious as to what is transpiring since the federal mental health mandate was passed? What is occuring is co-pays have gone up to 50% on MH services.

So please someone tell me what, for ASD, is deemed a medical necessity because if something is than folks that have Medicaid should also be receiving those interventions or services.

John Gilmore

The probelm with "evidence-based, clinically-proven, and peer-reviewed" is that this standard exists for no other health condition under New York law, or the law of any other stae for that matter. It is a far higher and much more restrictive standard so is therefore inherently discriminatory. We know from other states that these standards can be used to deny anything. The head of the Long ISland branch of the AAP , who endorsed the AUtism Speaks bill, said that OT, PT and ST would not meet this standard.

And treatment for no other health disorder under NY law has to be reviewed by four separate agenices, some of which have finacial incentives not to approve treatment due to the huge number of people who receive publicly fnaced healthcare n NY.

This law would set a horrible standard that no doubt would be used in other states to minimize coverage for our kids.

Stagmom for Bob

Hi, bob. I'm trying to figure out how to phrase this. You make a valid point. However, since autism is under the DSM, many of the medical symptoms our kids face are chalked up to behavioral reasons and therefore don't get medical coverage. There is precious little peer reviewed evidence based work available - because the default position in medicine is that autism is not treatable. When my daughter was having seizures her neurologist was unwilling to dig with testing telling that "She has autism." It knocks our kids OUT of treatment, and thus the frustration. Thanks for commenting. KIM


"The Commissioner of Health, in consultation with the Insurance Super intendent and the Commissioners of Mental Health and Mental Retardation and Developmental Disabilities, is charged with responsibility for promulgating regulations identifying treatment and therapy options."

Not only does this sound like an unfunded mandate, but why should we have to wait for these people have to approve treatments?

This is a horrible little bill dreamed up by AS in consultation with the insurance agencies and drug companies. I can see nothing that AS has done to help any child with autism.

bob damelio

Explain to me the problem with "evidence-based, clinically-proven, and peer-reviewed"??

Are we just screaming to scream? What is the problem, if this get many kids proper behavioral therapies?

Where is the huge sin?


Strange their bill seems to cover none of the treatments the Wright's grandson uses - and that's not telling tales out of school. Katie is always forthright about Christian's journey. As usual, AS pays no attention even to their closest loved ones with autism, opting to maintain the safe status quo that ensures dollars will still fill the coffers.

The only silver lining is that if parents don't have to pay out of pocket for ABA (for those who can actually FIND providers that is) they can spend those dollars on other treatments.

Let's hope the folks in NY get a proper answer as to what's covered for the kids' sake.


pass the popcorn

I called Autism Speaks and was told to call 202-955-3114. When I asked the question above, I was told "We believe ABA, speech therapy, occupational therapy and physical therapy will be covered." I was also told that new therapies can be added if they meet the criteria of being evidence-based, clinically proven and peer reviewed, according to a panel of state agencies that includes the DOH and the OMRDD.

Yes, that does sound a little Mercky. I mean murky.


I believe that "evidence-based, clinically-proven, and peer-reviewed" is the standard for what most of what health insurance will cover. It seems reasonable to have high-expectations of the evidence base for expensive treatments.

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