Whose Planet Is It Anyway?

Monday, June 30, 2008

Parents, Governor Denounce Autism Speaks' Interference with Pennsylvania Legislation

As reported on Yahoo News in a story from PRNewswire-USNewswire, the Pennsylvania autism advocacy organization AutismLink, which has the support of Governor Edward G. Rendell and Speaker of the House Dennis M. O'Brien, has issued a press release denouncing lobbying efforts by Autism Speaks that resulted in substantial changes to autism insurance legislation in Pennsylvania. As a result of Autism Speaks' interference, the bill "was gutted of all useful language" while in committee. AutismLink reports that parents are appalled by the actions of Autism Speaks in spoiling efforts to help autistic children:


"This bill was carefully crafted to end insurance discrimination of children with autism in Pennsylvania," said Cindy Waeltermann, President of AutismLink and parent of two children with autism. "Those who carefully crafted the bill understand the system in Pennsylvania. Although the bill has been endorsed by Autism Speaks, Pennsylvania families of children with autism by and large reject the bill."

"Make no mistake," said AutismLink Executive Director and parent of a child with autism, Rick Bryant, "The Autism Speaks team working on this bill is comprised of individuals from New York, California and Maryland and they are completely ignoring the advice and information given to them from Pennsylvania advocates and/or clinicians."

Speaker O'Brien agrees, "The current version of HB 1150 may look like it gives coverage to families affected by autism, but it's an illusion. This version will actually hurt some families who have kids with autism," said House Speaker Dennis M. O'Brien. "We must have assurances in HB 1150 that any standard used by the insurance companies is consistent with the minimum standard used by Medical Assistance. Otherwise, families who receive certain services under Medical Assistance are at risk of having those services denied by private insurance. This risk is unacceptable."

Lenore Wossidlo, a parent of a severely challenged child with autism in Pittsburgh agrees, "I am appalled at what Autism Speaks did to SB1150 to spoil it for these kids who can do so much when given the services they need. I stand behind the hard work of Speaker O'Brien."


The Autism Center of Pittsburgh also has denounced the current version of the bill.

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10 Comments:

  • Very, very interesting. Thanks for linking to this. Seems like AS is earning itself a little reputation for interference, yessss?

    By Anonymous Evonne, at 12:37 PM  

  • I believe what AutismLink wanted was to have insurance pay for chelation and various other alternative "treatments"

    By Anonymous CS, at 5:56 PM  

  • CS, here's a link to the history of the bill.

    My understanding is that it was intended to apply to conventional therapies such as speech and occupational therapy, in addition to requiring behavioral therapists to have state licenses in order to qualify for payment under the program.

    Although I am not a fan of behavioral therapy, I'd rather see these therapists licensed than unlicensed.

    By Blogger abfh, at 7:44 PM  

  • Cindy Waelterman is a mealy mouthed woman who hates, and I do mean, hates the idea neurodiversity. She also hates Autism Speaks with a red hot passion because they take away donations from smaller autism groups like "autismlink." She also hates them because they get more attention than she does, and because they don't 100% back chelation and abusive treatments of autistic children the way she does.

    She may have been behind a good idea for insurance coverage in PA, but I suspect that there's more to it, that she really hoped for was that the state would pay for abusive DAN! treatments on vulnerable children, she may have settled for less. I have no doubt that she'd want free DDI urine tests and free IV garlic and vinegar and urine injections for all autistics if she could get PA to pay for it. She'd probably like free duct tape to shut up the mouths of self-advocates, too. I think maybe the word "wench" was invented for women like Cindy Waelterman whose first reaction to hearing of Tariq's death was to do damage control for the biomed believers.

    By Anonymous Anonymous, at 10:04 PM  

  • Anonymous: I haven't met Cindy Waeltermann, and this post is not intended as an endorsement of her views or of anyone else's.

    I'm just reporting on the interesting fact of what is -- as Evonne correctly noted -- quite a reputation for interference that Autism Speaks has been building for itself, among people who hold a wide variety of views.

    By Blogger abfh, at 9:29 AM  

  • There should be inquiry into Autism Speaks' tax exempt non-profit status. But of course that won't happen. They don't seem non-profit to me. Even though they don't pursue a profit for the organization itself, their real purposes and conduct are geared to protect and extend profits for other businesses. What else would all of those wealthy business interests be donating to AS for?

    I wonder what AS does besides soft attempts at their proclaimed goals, ridiculous commercials, and screwing autistics with this stunt. They apparently don't want other entities making progress for the spectrum, as they are monopolizing the cause that all of the autism organizations are involved in.

    By Blogger lurker, at 12:28 PM  

  • Off topic but interesting.

    http://news.aol.com/story/_a/mom-accused-of-denying-son-medicine/20080702190609990001
    Mom Accused of Denying Son Medicine - AOL News

    Her son has non Hodgkins lymphoma and is Autistic. Mom and Dad are divorced and Mom stopped filling boys 'scripts and giving him his meds although he was going to the doctor. Cancer has come back with a vengeance and Dad now has custody. Child's outlook for longevity is poor.

    Mother is charged with reckless child endangerment and was released with no bail at all. Father is outraged. I think the courts will play hardball with her later since the news is picking this up.

    This is no better than Katie's murder-even if his death is indirect.

    Thought you should see it.

    ~Sarah



    ~Sarah

    By Anonymous Anonymous, at 9:51 PM  

  • Sarah: Yes, a horrible story. Kristina blogged it yesterday. I'm not sure it has anything to do with the child's autism, though. The mother previously had another child taken away because of neglect. Probably a drug addict.

    By Blogger abfh, at 9:41 AM  

  • Dear God, are you kidding me?? We have never "supported" chelation, nor do we "hate" the neurodiverse.

    I do not like Autism Speaks, that's not a big secret. They take money from local organizations that help autism, take it back to New York, and fund ridiculous research. That money should be used to help people on a local, grassroots level.

    Never did we advocate for any DAN treatments in this bill. Get your facts straight bonehead. And if you're going to post this garbage about me, at least have the cajones to use your real name.

    When Tariq died, my first reaction was NOT damage control. We put out a statement that said "be careful with interventions". Get your shit straight, man. In fact, here's exactly what was said:

    "Cindy Waeltermann, director of the Pittsburgh-based national advocacy group AutismLink, issued a statement to members yesterday warning that caution needs to be used as parents seek help for their autistic children.

    "Please, before you try any new therapies, we urge you to research the physician, the methods, and the safety. Some of these therapies are quite dangerous. We're not telling you what to do, we're just urging you to use caution. We all do what we think is best for our children, and sometimes we are desperate. While we've heard stories of chelation success, it is definitely a dangerous process," Waelterman wrote."
    http://www.post-gazette.com/pg/05237/559756.stm

    And I took a BOATLOAD of heat from the biomedical community for saying that.

    So maybe the mealy-mouthed imbecile is actually "anonymous" on this board????

    Cindy W.

    By Blogger Cindy W., at 8:56 AM  

  • By the way, anonymous -- the only mouth I'd like to see with duct tape on it is yours.

    And maybe some of the folks from Autism Speaks.

    Cindy

    By Blogger Cindy W., at 9:05 AM  

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