Soap opera in NY: As the autism insurance bill turns...

I received an interesting mass emailing from Autism Speaks today, which is an advocacy group that is currently supporting passage of the autism insurance bill in NY State. I paused because the email contained the following:

"Please stay tuned over the coming hours. The health plans are still working hard to ensure a veto. We need to work together to let the Governor know that we expect him to provide principled leadership and sign S.7000B into law this week."

I found this a little confusing because every other autism advocacy group that I know of in NY is opposing this bill, as are the NYS OT Association and the NYS Speech and Language Therapy Association. The concerns are that no other conditions require such a high standard for 'evidence based practice' as this bill and that this may be used to actually decrease what insurance companies have to reimburse. I don't know anyone that is against the concept of evidence based interventions, but it would be unfair to apply a standard like this to the autism diagnosis when we don't have that same criteria for other conditions.

The reality is that we are still developing evidence, and although insurance companies should not have to reimburse for quackery - they also don't need to hold the autism diagnosis to a higher standard for reimbursement than any other condition.

For background reading on why this bill is being opposed you can read this article that actually reports on who authored the bill - and the allegation is that this was actually written by a health insurance lobbyist!

So which is true?

Did a health insurance lobbyist author this bill? Why is Autism Speaks stating that "The health plans are still working hard to ensure a veto." ??? I am not aware of health insurance companies lobbying for a veto - but I am very aware of a lot of angry parents and health care professionals who are opposed to the bill.

I thought I would clear this up by contacting Judith Ursitti, the Regional Director of State Advocacy Relations for the Autism Speaks organization. She wrote the email that claims insurance companies are lobbying against the bill. I wanted to ask her why so many other autism advocacy groups are opposing the bill and why NYS OT and Speech Associations are opposing the bill. The people at Autism Speaks didn't have any answers for me but they gave me a contact number for Judith Ursitti that goes straight to voice mail. I left a message asking her to contact me. I have not heard from her yet.

I have no doubt that there are many fine people going to the Autism Speaks walks and doing all they can to promote autism awareness and to lobby for their interests. I don't know that people are fully informed of the controversy surrounding this bill. This is a little confusing, and since I can't seem to get an answer from Autism Speaks it sure will be tough to support this bill.

So which do you think is true? Did an insurance lobbyist write this bill?

Or are the insurance companies lobbying against it being signed into law??

It is indeed a sad day that legislation that should be having a positive impact for families dealing with autism is instead embroiled in such contradiction and controversy.


I received a response from Judith Ursitti via email and will post her comments in full:

Thanks for posting information about efforts to pass autism insurance reform on your blog. I apologize for not promptly returning your call. It’s been a bit of a crazy Monday. J

Here are some FAQ’s that I hope will be helpful. I think they cover all of the questions you had.

In addition, my colleague Lorri Unumb also wrote a really nice blog piece discussing some of the questions and misinformation that has circulated about S.7000B:

And just to be clear, S.7000B was written by a woman by the name of Kate Powers who is a legislative assistant for Senator Neil Breslin. You may know her? It was not written by lobbyists or anyone who works for a health plan.

Finally, here is an Op Ed written by Paul F. Macielak, President & CEO, New York Health Plan Association in opposition:

I know we are all working to make sure that New York families have access to the healthcare they need for their loved ones with autism spectrum disorder. Please let me know if you have additional questions. I’m happy to help.

Judith Ursitti

Regional Director State Advocacy Relations


I appreciate the response, but I am not sure if it really addresses the issue of why Autism Speaks finds itself standing alone in supporting this legislation. There is a lot of discussion about the evidence-based issue and as I said I don't think that most people are looking for reimbursement of sham interventions. The language of the current bill leaves insurance companies with plenty of room for exclusions. The fact remains that insurance companies do not have the same latitude for denying interventions that are commonly provided for other disorders; this bill holds autism interventions to a higher standard and that is blatant discrimination. The alleged purpose of the bill is to facilitate insurance coverage - and I just can't see how that will happen.

Also, the simple inclusion of 'medically necessary' language is a huge barrier: is it MEDICALLY necessary to intervene with a 'behavioral' problem? Language re: medical necessity is used by CMS to decline coverage for all kinds of issues - from personal care to hygiene to emotional and behavioral difficulties. Will a child with behavioral difficulties rise to the level of 'medical necessity?' I doubt it - most insurance companies already try to deny autism interventions because they are 'educational and behavioral' as opposed to 'medical.' That means that no one is MEDICALLY COMPROMISED by some child's autism - so there is no need for HEALTH INSURANCE if it is not a MEDICAL problem. I can see this coming from a mile away - I do not know why this kind of language would ever be allowed in the bill.

As for the opposition from the New York Health Plan Association, all I can find is a brief letter to the editor in an Albany newspaper - and the primary opposition is because they state that the bill will not cover what it states it is going to cover. NYHPA states that approaching the issue from mandates on those plans that can be regulated does not mean it will reach the majority of people. I went to the NYHPA website and they didn't have anything about the autism bill listed on their site. Seems it is not such a hot issue from their perspective - and again it makes me wonder why the email says "The health plans are still working hard to ensure a veto." I don't see evidence of this if all that is produced is one little letter to the editor written two months ago. This kind of overstatement leads to a real credibility issue for me.

It seems to me that the primary opposition is from professionals and parents who don't trust the wording in the current bill. I believe it is rather naive to craft a bill that lacks specificity and then expect that the regulatory power-in-charge will actually take this as an opportunity to serve the community. Perhaps Autism Speaks needs to reflect on everyone's experience in dealing with OMIG and OHIP recently to get a little perspective on the lengths taken by NYS bureaucrats to limit reimbursement for services.

Lastly, I don't know what to say about the authorship of the bill - the conflicting accounts speak for themselves. The bottom line is that IF this is signed into law, we will all wait to see what the actual impact is going to be. I object to this kind of legislation where 'the devil is in the details' that don't really become apparent until some regulatory body writes the rules for how the law will be enacted.

This is all highly reminiscent of being told 'You will like it once you see what is in it!' I am not impressed.

We can achieve fair and sensible insurance coverage and address reasonable concerns about evidence-based interventions. I am not that interested in seeing dice rolled about over the fates of children who have disabling conditions. I suspect that this can be done in a much better way.

This bill fails to deliver confidence and credibility - and when one is measuring degrees of failure that is a rather large measure to fail. Tragically, it might actually fail to deliver services too - which will be at the whimsy of however the regs are written. In this economic climate I don't hold out much hope that this will offer any real relief for families. I guess we will find out.


Popular posts from this blog

Deconstructing the myth of clothing sensitivity as a 'sensory processing disorder'

When writing gives you the willies: Reconsidering 'tactile defensiveness'

On retained primitive reflexes