Insurance Mandate Veto & Autism Speaks: Recently the governor of NY vetoed the Autism Speaks / S7000 Insurance Industry Bill (as referred to on aboutautism comments section) - what is generally not indicated in the cursory reports of the veto is the fact that passage of another bill, A6888B seems to have been essentially derailed due to the fact that Autism Speaks put a lot muscle behind S7000. When one considers that an accomplished former chairman of NBC co founded Autism Speaks - it should come as no surprise that his organization will possess seemingly effortless skill within principles of marketing and media. His lifelong associations within prominent circles serves to further his ability to promote agendas of his chosing. He has definitely got a lot of power and prominence.
Bob Wright is Senior Advisor at Lee Equity Partners, Chairman and CEO of the Palm Beach Civic Association and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. (link)
Autism Speak's motus operandi will probably continue to, at least partially be, that of giving just enough information - but not all of it - in order to engage the masses in activities that shape, mold, and move - powerful action. (This is actually a media business model, isn't it?) Does Bob Wright simply come from a place where it seems acceptable to insist that his mold, is the only mold, and all other endeavors have somehow been found lacking? He obviously is accomplished as far as being the one that everyone looks to for answers, an icon - and now he simply continues to be true to the traits that have made him successful, and is applying them toward everything that is autism according to his perception. He seems to be trying to accomplish what the medical and psychiatric community has yet to accomplish; define and make sense of all the entails autism. Worthy goal, and none of us are there yet!
Foremost, we might need to consider Bob Wright as the grandfather of a child with autism - one who is not as far along in the journey as others. Apprehension is engaged for me, due to the fact that he is a grandfather with undue power, and he has yet to go through all the phases that the autism journey entails. He hasn't been in it long enough.
If I had the kind of Bob Wright influence (ability to shape and mold thoughts and actions over such a broad population) upon my daughter's earliest autism experience, hindsight indicates that my engagement of personal and powerful advocacy would have eventually partially relented, and engaged upon some about-faces with regard to beliefs - once held so strongly. There are things that I engaged upon during earliest advocacy for my daughter, that I would refuse involvement with now. It takes a while to really get to know autism in all its glory. Autism remains an entirely different experience that encompasses varied context for each and every family.
About the insurance mandate veto, and the varied disagreements within the autism community about which is best. While Autism Speaks has a lot of mojo and is headed up by a powerful autism grandpa, the organization is not the only voice for autism. The Autism Action Network is one of the many autism organizations which provide written opposition to S7000.
...S7000B/A10372A allows insurance companies to deny basic interventions such as speech therapy, physical therapy, occupational therapy, and ABA therapy on the ground that they are not "evidence based", "peer-reviewed" and "clinically proven." S7000B/A10372A opens up the insurance industry so that everything is fair game, and in the marketplace today the game has been played to deny or severely limit coverage. (link)
The explanation of the alternative bill, A6888B, is as follows:
...Our experience also has shown that unless legislation prescribes coverage for specific therapies insurers will find a way to deny coverage. Assembly Bill A6888B performs this function without limiting coverages that are not specifically identified in A6888B the language of the bill. Contrary to the claims of its critics, Assembly Bill A6888B specifically enumerates covered therapies "such as" speech, physical, occupational and ABA therapy, but allows for coverage of additional treatments that are medically necessary and not experimental. (link)
Those who are vocal in the autism community seem to focus on the fact that families need to be given complete funding in order to engage upon ABA type teaching programs for their autism affected loved one. ABA is presented as something that is a specifically defined treatment, however it is not. There is no set ABA type program that has proven to give the kind of life-long benefit that many of our experts empirically imply. Some experts seem to go so far as to infer that with enough intensity of instruction, ABA type teaching programs will modify the neurology that is responsible for the presentation of autism - thereby eradicating it. That is theory. (see Autism ABA Implications Within Psychology & Neurology)
What is ABA, and is it specific or enumerable?: ABA type programming is touted as the most efficacious method for autism intervention. In essence, theory or hope engaged upon by prominent professionals is lifted up as empirical; no real data exists to support what many of them say. There exists no set formula or program that churns out a set result when utilizing ABA. ABA is an applied science of human behavior that must be uniquely applied for each autism affected individual. There is no set - or uniformly agreed upon procedure, practice or curriculum that defines it. As far as applied science of human behavior (Applied Behavior Analysis) that informs affective autism treatment, there remains many questions with regard to which procedures, practices and curricula fall under the ABA umbrella. (see comments here)
Studies that have attempted to ascertain efficacy of various ABA type autism interventions (coined as ABA or behavioral type) might be called into question. How many times have educational and psychological research endeavors into differing ABA types of programming been based upon the group research model? Group research models de-emphasize individual differences in autism affected children, making an assumption that - making a conclusion based upon an overall group response average provides a truthful or scientific result? It does not.
ABA in the truest form is intended to be the sole scientific study of an individual child - using that autism affected child's unique patterns of behavior as the lone scientific control. Studying the child and his or her responses to differing methods - in this way - results in a very unique prescription of intervention; comprised of a variety of approaches that are tailored according to the child's own efficacious response to those varied approaches. The child's response to the differing procedures, practices and curriculum utilized and studied for appropriateness for that child alone - are evaluated in a constant, ongoing fashion.
ABA as a presence, and function, in public schools: Public schools have an existing mandate to provide fair and appropriate education, and are called to leave no child behind. Schools use an Individual Education Plan process which calls for advocacy during planning meetings - an advocacy process that is engaged upon between parents and the school district on the autism affected child's behalf. While not available in every school district, there are many times, multidisciplinary teams comprised of individuals with the proper credentials to both diagnose and build intervention plans for the autism affected child - all under the auspice of the public school setting.
Under a best case scenario (that might seem theory or a pipe dream to many families), public school - Individual Education Plans (IEPs) already apply analysis of the autism affected child's response to varied teaching methods and seek out the more advantageous methods that will benefit the child, if and when plateau or regression is noted. Each students IEP process is motivated by that student's parents, and teachers - so it will be different according to how much advocacy the parents chose to engage upon. While there are identified processes acknowledged as utilized for years within school districts; some districts have become quite a bit better at comprehensive autism intervention than others, and others have simply failed altogether.
From FAPE to IDEA: In the areas where public schools have comprehensively understood autism intervention strategies, what has transpired over the past decade or longer, is an Individual Education Plan process that has morphed from a type of Applied Educational Analysis under the fair practice (FAPE) scenario, to an Applied Behavioral Analysis under the best practice (IDEA) scenario. (This is because schools have understood the need to have qualified experts on staff. The expert is the key in properly applied ABA strategy.) Therefore, depending on where a family lives, things might - or might not - be really great where autism intervention possibilities are concerned within the public school setting; ironically, under insurance mandates, the same unsure educational availability scenario will most likely present...depending on where a family lives, things might - or might not - be really great where autism intervention possibilities are concerned.
The autism insurance mandate in all likelihood, will shift intervention burden away from an already significantly funded public school mandate. Under an autism insurance mandate, a scenario presents whereby public schools might continue to receive significant funding for the autism affected child who attends public school (under a fair practice standard) - all the while the child will also receive private ABA type programming (as a best practice standard); funded by insurance mandate.
Here is a great explanation from aboutautism.
...Of course, public schools are paid for by taxpayers, who are now being asked to pay for the SAME treatments through increased health care premiums. And those SAME treatments may (or may not) also be provided to individual families through state medical access programs or through federal Medicare entitlements - all of which are, of course, underwritten by taxes. What that means is that, depending upon a family's state of residence, school district, insurer, financial status and age, any individual family may have one, two, three, four or zero sources of funding for a dependent's autism treatment. And depending upon a family's circumstances, all, some or none of their services may be provided at taxpayer expense...
No matter how the differing autism mandate scenarios turn out, it really comes down to family and community. There is a lot that funding and teaching can do. However, something that can be affirmed, is the fact that families (and communities) who are meaningfully mentored by professionals with regard to understanding autism - learn to walk alongside the affected one, no matter the life-long implications. When both family and community learn in this way, the burden of high financial cost becomes less significant because the bar has been raised as far as overall family and community comprehension and ability to interact with the autism spectrum individual. Less emergencies might crop up that require the assistance of costly experts. The meaningful mentor relationships that my family has experienced have been the result of long term relationships with my daughter's public school teaching professionals. Perhaps we were just at the right place, at the right time...
We don't contact our mentors near as much as we used to, but that is because they did a great job mentoring us! We don't require the assistance of other experts as much as we used to, because we learned through the pain, in the years that those various experts sought desperately to help our daughter.
Through our short autism journey, during the rougher times, we really needed time and space and the availability of those who were willing to help while also providing graceful understanding. I remember what it was like when I didn't have anyone to call, only because there was nobody that would be able to help anyway. Even though we had done every good thing that might benefit our daughter, nothing helped. At least we had the options to engage in every effort imaginable throughout my daughter's earlier years. That is what families want, the option to engage in every effort imaginable. Therefore, while the differences about how to provide best practices rage on, may we soon get to a place where funding such is done in a way that makes sense - and does not present illogical double funded burdens.