By Chris Petrosino
One of my favorite episodes of the Rockford Files was when Jim Rockford (James Garner) told the con man, Angel Martin (Stuart Margolin), "Don't kid a kidder." I would venture to say the autism community would make the same response to Lorri Unumb, senior policy advisor and counsel for Autism Speaks. Unumb, an attorney and law professor, recently scribed a disingenuous memo in defense of New York State's S.7000B/A10372A, the abominable autism bill opposed by many national and local autism groups. (See the Age of Autism post, NY Legislature Passes Separate & Unequal Autism Insurance Bill Championed by Autism Speaks for details.)
A recent Newsday editorial, which examined this matter, diplomatically, in detail, also opposed the bill. First of all, insurance company lobbyists contributed significant sums of monies to the Insurance Committee Chairs who tried to force feed this bill to our community. Additionally, Autism Speaks consulted with one of the largest insurance company lobbyists, Manatt, who helped write and advocate for this bill. So, please, don't kid a kidder.
However, I do not think the corporate friendly Autism Speaks, or Unumb, consulted with Rubenstein, the penultimate public relation firm that Autism Speaks paid at least $455,000.00 in 2008. It is never a good idea to chide fellow parents for being objective about the fears they have for their children's health. If anything, Ms. Unumb, who portends to be representing all of our children, should be more objective. If you are going to point out that you are an attorney and a law professor, defending our children, you have an obligation, like any attorney or professor, to give us the pros and cons of pending matters. But, Ms. Unumb only wants to tell us only what is good about S.7000B/A10372A. She only wants to tell us what she wants to tell us. And, unfortunately, she may not even give it to us straight. Please see the following comments Unumb made in an interview with CNN:
"...I've met so many other moms who were doing the best they could, and I just wanted to say to them, 'You know, an hour a week of speech therapy for your child is never going to make him better,' " the mother of three says..." "...But I didn't want to tell them what they needed is 40 hours a week of therapy, because there's nothing they can do to buy that..."
The advocates that oppose Unumb's NYS bill roll their eyes when they read the above. We look at these problems in a different way. We tell the moms the truth and help them advocate for those hours. We give them the science to prove they need the hours. They do not have to buy those hours if we teach them how to fight for what is rightfully theirs. It is easy to say, "Hey, I have mine. I do not want to rock the boat or start a ruckus." Non-discriminatory health care is our children's right. We will not stand for a compromise that benefits corporations instead of our children.
As per the frustration with insurance companies in Unumb's native state of South Carolina, she got that right in the interview:
"It's not like you read your insurance policy and you can see a specific exclusion," Lorri Unumb says of the early days after Ryan's diagnosis. "We submitted bills, and we'd get denials back that said 'experimental... denied,' or 'provided by a non-licensed provider... denied.' Or sometimes the insurance companies would say 'this therapy is educational in nature, not medical... denied.'"
Ms. Unumb wanted to stop this type of discrimination, right? She did moderately well with the wording in the South Carolina autism insurance bill. In a recent memo, she proudly states: "In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:" A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating medical doctor in accordance with a treatment plan."
But, it is just too gosh done bad for us Yankees up here in New York. We don't get the benefit of the above, broad language. We get a different type of wording. We get a type of wording and government regulation in our NY bill, never before seen for any illness or disability. The type of wording that would stimulate and exacerbate, for us, to the 10th power, the frustrations she quotes. We get to have therapies and treatments reviewed by a multi-agency committee that will evaluate the efficacy of those therapies and treatments under the broad guidelines of: "evidence-based, peer-reviewed and clinically proven." She did not write that into the South Carolina bill. Why is it written into ours? The bigger questions that are screaming out to all in society, especially the sick and disabled are: If you take the decision of what is necessary away from the treating doctors and place it in the hands of government regulators, where does it stop? Will there be a NYS multi-agency committee for Down Syndrome? For cancer treatments? For senior care?
When you successfully advocate for legislation to help families, like we did with "Jonathan's Law," you find yourself in the messy gauntlet of politics. There is always, naturally, an antagonist. You keep looking over your shoulder for that person who is going to waylay you. But Unumb did not have to worry about that. When into Albany rode Unumb on her horse, the insurance companies screamed, "Yee hah!" You see, the fix was in.
Aside from being so cozy with corporations, there are other good reasons to question the sincerity of, and simply not believe Ms. Unumb and Autism Speaks. They continue to forcefully indicate that S.7000B/A10372A will cover such treatments as ABA, speech therapy and occupational therapy. And, a la Angel Martin, they say this with their best poker face. Shakespeare is quoted, "What's past is prologue." Originally, Unumb, Autism Speaks (and the insurance companies) were lobbying for the American Pediatric Association guidelines to be used to determine what would and would not be covered in this bill, until such time that the multi-agency committee made those determinations. It would stand to reason, if you are an educated attorney/professor, that you would have read the guidelines you are endorsing. If Unumb were solely a passionate but uninformed advocate, she would get a pass on this. She is not. The intentional web of lies is coalesced.
Please see analysis and some quotes from the APA guidelines below:
Apparently, routine screening for seizure activity is contraindicated. It appears that you should not check out a child for seizure activity via EEG until he/she has a full blown out seizure. Also, you should not do gastrointestinal work-up unless there is clear indication the child is having GI issues, which could include behavioral problems (not bad idea). Therapies such as ST, OT, SI seem to be recommended as educational treatments, not medical treatments (would be just fine with the insurance companies). APA not strong on their endorsement of these helpful therapies, even under educational.
Seizures - "...Whether subclinical seizures have adverse effects on language, cognition, and behavior is debated, and there is no evidence-based recommendation for the treatment of children with ASDs and epileptiform abnormalities on EEG, with or without regression. Universal screening of patients with ASDs by EEG in the absence of a clinical indication is not currently supported. However, because of the increased prevalence of seizures in this population, a high index of clinical suspicion should be maintained, and EEG should be considered when there are clinical spells that might represent seizures..."
Gastrointestinal - "...The existing literature does not support routine specialized gastroenterological testing for asymptomatic children with ASDs..."
Speech Therapy, Occupational Therapy, Sensory Integration Therapy and Social Skills - Therapy falls under Educational, NOT medical in AAP document. Nevertheless, AAP is not really endorsing any of these therapies:
Speech Therapy - "...However, traditional, low-intensity pull-out service delivery models often are ineffective, and speech-language pathologists are likely to be most effective when they train and work in close collaboration with teachers, support personnel, families, and the child's peers to promote functional communication in natural settings throughout the day..."
Occupational Therapy / Sensory Integration Therapy - "...However, research regarding the efficacy of occupational therapy in ASDs is lacking..." "...Unusual sensory responses are common in children with ASDs, but there is not good evidence that these symptoms differentiate ASDs from other developmental disorders, and the efficacy of SI therapy has not been demonstrated objectively..."
Can Ms. Unumb and Autism Speaks tell us that the agencies will not quote these guidelines to deny treatments for our children? Of course not! Can they tell us that the agencies will agree that insurance provide ABA, speech therapy, and occupational therapy? They should not! Those questions take us back to A6888a, the autism health insurance bill our community really wants. 6888a is a decent, honorable bill. It will protect the health and civil rights of individuals affected by autism. Assembly bill A6888b, sponsored by Assemblyman Koon, lays out a very clear plan, in the bill itself, for covering reasonable therapies such as PT, Speech and OT. It provides, in writing, in the bill, for psychological care, psychiatric care, anesthesiological services (when ordered by a physician or dentist), and endocrinological care. It is a thoroughly comprehensive bill (broad in the right areas) that requires insurance to pay for treatments that are prescribed by doctors to: "...prevent the onset of an illness, condition, injury, disease or disability; reduce or ameliorate the physical, mental or developmental effects of an illness, condition, injury, disease or disability; or assist to achieve or maintain maximum functional activity in performing daily activities.."It is clearly laid out in writing. There is no wiggle room. There are no committees. It is not a compromise bill. It will end insurance discrimination. This bill was well on its way when Unumb and Autism Speaks came in to bail out the insurance companies, using broad language that would give them the ability to deny coverages.
It is unfortunate that we have to confront people and organizations who pretend they are doing the right thing for our children and really are not. They make misleading statements to our community to get a bill passed, any bill passed; even if the bill puts the needs of corporations ahead of our children. Our community is taking notice of that, more and more, every year. Many of us are silent because we are completely overwhelmed by autism and just don't have the time to get involved with these matters. We take it on a faith basis that everything is fine. That's exactly what the insurance company lobbyists and some autism groups counted on when they besmirched the truth. And there are some that have the wherewithal to understand these issues, yet remain silent. They remind me of my dog, when she sits up, salivating for a treat. The continuance of, or the prospect of a paid position with Autism Speaks, funding from Autism Speaks, corporate America, or NYS legislator-administered block grants, has them, willfully, tongue-tied. I wonder how these people, and they know who they are, can look at themselves in the mirror, or sleep at night.
Such a depressing state of affairs requires a semi-humorous ending. Another entertaining television show of yesteryear was Abbott and Costello. There was a great back and forth between Bud Abbott and Mike the Cop. Mike the Cop was agitated and was ready to arrest Abbott for something or other. Abbott asked Mike the Cop a series of questions. It was a logical progression of explaining to Mike the Cop that he was being paid by the police department to protect the citizens, which department used taxpayer dollars for his salary. Mike readily agreed that Abbott was a taxpayer and was, therefore, paying his salary. Once this was established, the argument was over when Abbott yelled at Mike the Cop, "You're fired!" Right now, there are thousands of families in New York who would like to say that to Ms. Unumb, and of course, Autism Speaks.
Chris Petrosino is the Father of Chris, a 17 year old boy affected by autism, Wife Joan, three children, Chris, jr., 17 years old, affected by autism, VP of Nassau Suffolk Chapter of ASA (former pres for seven years) - information and referral, advocacy, coordinate free programs for families, etc. He is also the site administrator for New York State Advocacy Central for Autism (http://www.capwiz.com/nsasa) where he put up alerts, organizes responses, calls legislators (when they tell me they have not heard from our people (BS), I tell them, "Please excuse me, but our database shows that you have received 147 emails in this matter. Do you want their names and addresses?") a part time private investigator and a part time student (nursing).