The governor of the state of New York has vetoed a bill for autism insurance reform. You may have noticed that I have not been talking much about this lately. Good reason for that too.
A little background: currently 23 states have laws on the books mandating some sort of insurance coverage for kids on the spectrum. 13 states (including NY) have legislation pending - bills introduced and endorsed, and another 9 states that have bills awaiting introduction into their respective legislatures. That leaves 5 states with nothing going on at all.
The New York bill had unanimously passed both the State Senate and Assembly. Governor Paterson vetoed the bill at the last final moment he could legally do so, the evening of day 10, that it reached his desk.
People affected by autism were split on this legislation. There were many who were happy the governor rejected it. There were forces out there that stated that Governor Paterson had heard their calls to veto it and were happy with his decision. However, his declared decision had nothing to do with these parents wishes for the bill to be rejected; he vetoed the bill for fiscal reasons alone according to the veto documentation. In his veto justification, he estimates the state and municipal cost at $70 million annually. Autism Speaks refutes this estimate as being "inaccurate costs projections" and cite $0 dollars first year, and the subsequent year at $30 million with insurance premium increases of 0.65%.
Supporters say it would allow for coverage of diagnosis and evaluation, plus evidence based approaches like behavioral therapy. Our out of pocket costs for behavioral therapy for this year will be approximately $18,000 and his evaluation at Yale was $5,500. These costs do not include his dietary intervention costs and supplements, integrative pediatrician visits, copays, the basement finishing we are doing so he can have more effective space for PT and OT, nor the specific toys and materials that we purchase to support his therapy, books and other reference materials. I cannot even remember what last year cost us, but it was similar. As we like to call Zach around here: our little kitchen remodel.
"I am extremely sympathetic to the very real struggles faced by the families of individuals with ASD," Paterson said in his veto. "It will be a subject of my continued advocacy as a private citizen. But now I am governor and I cannot sign a bill that would impose costs that the legislature does not fund." Gov. Patterson
So why did these parents want this bill rejected? One thing objectors state is that it would give insurers the ability to reject claims once accepted. According to critics, the criteria of treatments to be "evidence-based, peer-reviewed and clinically proven” is above and beyond standards for any other medical treatments. Some state that there isn't a single treatment that could pass these constraints. However, families would have been able to appeal denials to an independent review panel if an initial grievance to the insurer was unsuccessful.
Another issue: governmental oversight. There would be a four-agency committee to decide what treatment may be covered. As pointed out by the objectors - no other medical condition requires this.
And what is my particular take on all of this? I was leery the moment this particular bill was introduced. I had been following insurance legislation, since we got into this whole mess in the first place, 23 months ago. There were several bills that were introduced, and one bill that seemed more comprehensive than the others.
All of a sudden, out of what felt like no where, a new bill, S7000, arrived and consequently was passed within 3 months of introduction. My hackles were raised at how this all proceeded - and I felt it could only be one thing: a behind the doors deal. I kept my suspicions to myself. Remember: I know I have the reasoning of a 77 year old man and realize my skepticism may not always be accurate. I want to believe in good things.
But then I read the bill. It was vague and without constraints - no caps? no age limits? Seemed incredibly open-ended.
As I kept mum about this, since I felt so ignorant about it, I kept my ear to the ground. And what I have heard seemed to confirm my skepticism. Rumor #1: The legislation was drafted by an insurance lobbyist. Rumor #2: The legislation was introduced in a session where no non-legislative attendees were present with the exception of the drafters of the bill - said insurance lobbyists.
Certain groups that have an official capacity in these things endorsed the bill - such as NYSABA (New York State Association of Behavior Analysts), AAP (American Academy of Pediatrics) and even the New York State Catholic Conference. But they are likely unaware of all the legal/political underpinnings and suspicious activities around this bill.
Honestly, I am unsure of how I feel about this bill. Part of me, just wants to see anything get through, and once we get our foot in the door, we can just try to pry it open further. But the other part of me is feeling like someone has poisoned the watering hole; this legislation could be outright dangerous and avoid covering anyone while making the general populous think that there is coverage and children are having their needs met. uugghhh
The inequity in treatment drives me nuts. I have heard that if we lived in Connecticut or Massachusetts, that most of the therapy would have been paid for by the school district according to a few of the therapists we have used that are from those areas. I have heard that if we lived downstate - in the New York city area, that we would be getting 40 hours no problem. I know parents in the local area who received services, 40 hours, etc. from their school districts, although not many. I know of a family who moved to Wisconsin and will be getting 35 hours of services for their child. Are we supposed to move in order for Zach to get services paid for? Don't think we are not thinking about this.
This is what I know:
1) my son needs services,
2) the services he has received have made a difference for him; his early intervention has likely helped to create a better outcome for him, as limited as it has been.
3) he needs more services than we can afford for him.
4) every dollar spent now likely will save much more later.
This is also what I know:
1) Insurance companies
3) Backdoor policymakers
scare the snot out of me .... OK not really, but they don't have my son's best interest at heart.
It's up for me and Steve to finagle a way to make things work for Zach - and it is important for me to point out to all of you who are not going through this that gross inequities exist for families who need services for their child. You are not given anything automatically and what might look good on paper might stink in reality anyhow.