My letter to the finance committee

Members of the Finance Committee,
As many of you may know (either from face to face discussions or from previous emails), my name is Jamie Bailey - I am a father of a six year old son with autism, an advocate for autism rights in our state, lifelong resident of WV and current resident of Bridgeport, and a frequent visitor of the capitol this session to support the passing of HB 4091. I was informed this evening, to my dismay, about the action taken in today's Finance Committee Meeting to turn HB 4091 into a yearlong study resolution (HCR 72) - again. There are several problems that I have in relation to this:

1) This was the SAME action taken last year (aka - 2007's HCR 81). HCR 81 was assigned to the Select Committee D of Health Study Committee and was discussed once throughout the entire year. Though opportunities presented themselves throughout the year, it was discussed only once. So, essentially we waited an entire year to discuss it for approximately one hour so we could get to this session and take the same action again... What exactly is this doing for our children in WV with autism spectrum disorder right now? Absolutely nothing! An entire year passed in 2007 with no action taken to help our children with ASD's whatsoever, and it is evident that no one wants to stand up for our children this year either. My sole hope in relation to this year's version is that the committee that will receive this assignment will talk about this issue more than once and that individuals to provide presentations to this committee that actually know what they are talking about - more specifically parents, ABA (Applied Behavioral Analysis) trained personnel, and DAN! (Defeat Autism Now!) practitioners. Bringing in anyone else would simply be a waste of the committee's time, and so far our ASD children have lost too much time through this process. Just by comparing HCR 72 to HCR 81, you will see that the same action at this time has been taken:
HCR 72 (2008)Requesting the Joint Committee on Government and Finance to study existing autism services

HCR 81 (2007)Requesting the Joint Committee on Government and Finance study the statistical rate of autism among this state's population and to study existing autism services in this state

2) This "decision" was made on bogus financial estimates that PEIA could not even prove to be true. Personally, I found the multiple Fiscal Notes submitted by PEIA to be inaccurate and insulting, and though I had requested to Mike Adkins (Deputy Director of PEIA) to send this proof to me for review, not surprisingly I have yet to receive them. Has anyone requested that PEIA actually prove their overestimated financial claims in relation to HB 4091? If not, I would suggest that someone do so. Here the problems areas with their "fiscal notes:
"Presently, PEIA does pay for diagnosis of autism spectrum disorder." Not according to a couple dozen parents that contacted me about the coverage they received for a diagnosis through PEIA.
The resulting claims for this type of testing costs the Plan approximately $50,000 per year." Provide the data that supports this statement.
"There are 28,001 children insured by PEIA that could be between the ages 2 and 15 and that population would have the probability of the autism spectrum disorder based upon the standard definition of the disorder of .65%, or approximately 182 members." Why 2 through 15, especially when the average age of diagnosis in this state is 4 years and 6 months of age? And based on the fact they "studied" South Carolina's autism insurance bill it is apparent they studied it too closely, where they used the 0.65% rate from SC and the actual rate of ASD in WV is 0.71%, which would actually equal 199 members. (See the 2007 CDC Autism Study for facts and figures about ASD's in WV.)
"PEIA also is assuming that some of these individuals will require very intensive 8 hour a day, 260 days a year care with a potential annual cost of $142,000.00 per child for conventional research based treatment;" Why would they make that assumption? Where did their numbers come from? Did they include within that assumption that those children over the age of 10 would not receive behavioral therapy because they are now too old where early intervention was not achieved?
"the PEIA projects the extension of this coverage to increase the first year annual costs to the Plan of $6.8 million." So they are saying that their estimated 182 members will cost them $6.8 million for the first year alone? Provide the proof and calculations used to generate this number, because this is absolutely ludicrous. (Attached to this email, I have provided my own fiscal projections that actually provides proof as to what this increase would actually be - and could be done solely by raising policyholders premiums between $0.30 to $0.74 per person per week and cost nothing to the state.)
"Future costs would trend upward with the rising costs of health care delivery, presently assumed to be approximately 8%." Not according to the Council for Affordable Health Insurance, where they have consistently shown that by adding autism mandates in other states that state premiums have only increased by less than 1% (See attached document in PDF for reference, pages 4 and 5).
"The Medical Director of PEIA also expressed real concern with the required coverage of experimental treatment methods and the non-FDA approved drug therapies that would be included in this type of experimental treatment. Without some acceptance by the medical community based on research in the treatment of these individuals there is a real possibility of harm to the individual and possible liability issues caused by the same." What is being asked for within this amended bill is FDA approved treatments and prescriptions, but this Fiscal Note makes the "assumption" that they reviewed the data provided to them that states this, which they obviously have not.
"A quick review by the Medical Director and staff of PEIA disclosed that many of the individuals affected by this disorder already have alternative coverage available through a variety of federally funded programs, including our State educational system. It is unclear whether this bill would adversely impact on the delivery of existing services or complicate the provider payment due to coordination of benefits between by these various groups?" Alternative coverage??? When did the educational system begin providing insurance coverage for children with ASD's? I do agree that there are other resources in WV that COULD be providing more assistance to our children with ASD's (school districts and Medicaid for example) but they consistently do not - However those are different issues for a different time. Also, it sounds to me like PEIA is doing what they can here to simply "pass the buck" and point fingers to others (though deservedly so) instead of doing what is really needed here and providing coverage to our children in WV with ASD.

3) $76 million of state funds to help those who, on their own will, decided to go into the New Teachers Retirements System is getting more movement and consideration than the grossly over-estimated PEIA increases for HB 4091. Remember this for future reference, these teachers are getting a "do-over" on their retirement, our children with ASD's only get ONE CHANCE at a life... There is no "do-over" for them.

4) What happened to the supposed "proposal" that PEIA provided to amend this bill and keep it moving because, in their words, it had "merit"? This was another piece of documentation that I heard existed and again was declined access to it by members of PEIA, but yet they said they thought they found a "solution" to keep this bill moving because it had good merit to move forward this session. Well, obviously not good enough...

5) None of the major supporters of this bill knew this was going to be final result of this bill during this session. Though myself, and others, were informed that a resolution was an option, we were all under the impression that work could still be done to move this bill this session. What happened? The action to go through this resolution process was a complete surprise without any respectful indication, notification, or discussions. And to be quite honest, I have been way too accessible, forthcoming with information and discussions, and too frequent of a visitor this session to be informed by a third party that this is what happened today.

6) Those Finance Committee Members that supported HB 4091 were completely robbed of the opportunity to discuss this with the committee, hear all sides, and allow this bill to receive its due diligence through the committee process.

7) Finally (though I could continue to go on and on), it is going to cost the state much more without an autism insurance mandate than with one in place - even a best case scenario mandate for our children and their families. Just with the approximate 2,500+ individuals with ASD's currently in WV, this group alone will cost the state approximately $136 million per year and in excess of approximately $8 billion over the average life span of 60 years. Then, we can begin including an additional $8 million per year (every year) based on the new case diagnoses we receive in WV. So, are we really going to allow the insurance companies to place this long-term and continually growing financial burden on our state because they simply do not want to cover autism under their policies for an additional 30 to 74 cents per person per week?

I do believe that if handled correctly that this resolution can be positive and would make an impact on changing things for the better for the individuals in WV affected with ASD - However, waiting another year before doing anything at all is immoral and irresponsible. Why is it not possible to pass a sound piece of autism insurance legislation AND perform a study resolution to fully identify insurance weaknesses as well as other issues that needed corrected for our ASD children throughout the state? The fact is that it could, and still can, happen!

I am urging you all to do whatever it takes to make something happen now! It doesn't have to be a "perfect world" scenario right off the bat for the parents, the insurance companies, or anyone else, but it can be a foundation to the beginning of change that our state so desperately needs to appropriately care for our children with ASD.

I will do anything and everything I can to help make this happen before the deadline passes on Wednesday, I hope that you will do the same.

Sincerely,
Jamie Bailey