Tuesday, September 28, 2010

Sebelius: pot calling kettle black

Nevada's republican candidate for the U.S. Senate has recently been mired in controversy for statements she has made about the new autism insurance mandates, using air quotes to describe autism and implying that perhaps these people don't deserve coverage or that autism is a trivial condition.

Interestingly, secretary of health and human services Kathleen Sebelius has given her take on the matter Sebelius states:

It is my understanding that Sharron Angle believes that there is a hoax, under the guise of autism, where you would include requests for treatments that may not even be required," said Sebelius, who was in Nevada promoting health care reform with Harry Reid.
Sebelius pounded Angle's comments as "insulting" to parents and kids, adding: "I don't know if there is anyplace in the country where the differences in the candidates are more stark than here."


Autism's gadfly has questioned the value of these insurance mandates in the past, particularly covering ABA, an experimental treatment where the research has used punishment in order to get the results, in spite of the fact that these punishments have been outlawed in California, where I live and possibly other jurisdictions, as well as the fact there have been no published adult outcomes though the federal government has funded this research to assess adult outcomes.

Of greater concern, at least to this blogger, is is the strong statement by autism speaks is that these insurance mandates will make the difference between an autistic child having friends and not having friends.

Aside from the problems of these insurance mandates and their dubious value it seems odd to your humble blogger that Sebelius would be making these statements in light of the fact she has appointed one Ari Ne'eman to the Interagency autism coordinating committee. Gadfly questions the constitutionality of the IACC and the fact that these appointments by the secretary of HHS would seem to violate the principles of checks and balances between the executive branch and legislative branch that this country was founded upon in that these appointments don't require confirmation by the senate and Sebelius is accountable to no one in making a controversial appointment. Speaking of quotes, air or otherwise, check out one statement by Sebelius appointee:

The belief was that anyone society labeled"disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....

Also another statement:

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed.

Regular readers of this blog will remember that after Ne'eman steadfastly denied that he had ever said autism was not a disability, Gadfly called Ne'eman out on these statements. He subsequently edited the essay changing the difference is not disability statement to difference only becomes disability when not accommodated for. Apparently dissatisfied with this rather pathetic attempt at damage control, Ne'eman and his ASAN cronies deleted the essay altogether from their web page.

Another interesting statement from Ms. Sebelius' appointee:

But if we are to demand equal legitimacy, if we are to assert that a “cure” is not only unnecessary and undesirable but also morally reprehensible

Again, note the irony of the c word in quotes.

Ms. Sebelius, I can't speak for whether some found Ms. Angle's comments insulting. On the other hand, I find your appointment of Ari Ne'eman to a taxpayer funded body that mandates autism policy utterly offensive. I find it strange that you would make these comments critical of Ms. Angle as if you really give a shit about persons on the spectrum, when you appoint someone who does not tell the truth about saying autism is not a disability and claiming that curing people of this affliction, which I presume mandated insurance would pay for if such cure existed, would be morally reprehensible. It would indeed seem your statements are hypocritical and you are a very black pot calling a kettle the same color.

20 comments:

Anonymous said...

Fascinating about the essay - he was only about 7 when he wrote it, so we've got to cut him a little slack.

I personally don't want society to accommodate my wild-eyed, jabbering lunatic routine in the supermarket - neither do I want to spend the rest of my life costing the taxpayer $100,000 a year - but since it's them that largely make my life hell, I've stopped feeling guilty about it.

Some change in peoples' attitudes would help, but Neurotypicals being what they are would need to have their brains rewired before they could stop acting like arseholes.

Even when and if I had all the (fantastical and non-existent and never to be attained) accommodations, I'd still have a significant disability - one I could do without.

They (the cadre of the former 'Neurodiversity USA'/Ari-Ne'eman's-career-plan) aren't on the whole very autistic at all. I think they have about two people as disabled as us - but they're not allowed out.

The non-verbal guy in Ari Ne'eman's video, was I think actually from Kent Adam's support group.

Anonymous said...

That wasn't anonymous it was me. Socrates, sober and half blind in one eye.

Autism Mom Rising said...

I don't think just because punishments were once used in ABA that makes ABA questionable in 2010Adversives are not part of the protocol anymore and never should have been. It evolved away from that, thank goodness.

My son would not be where he is today without modern ABA. He absolutely loves it, is estatic when the providers arrive and will work for no reward. It has been a miracle for many children. I believe it is the reason my son has moderate and not severe Autism after having gone so many years with undiagnosed Landau Kleffner. I can put no premium on that. I hope insurance is required to fund it everywhere.

Kent A. said...

ABA is another pipe dream sold to parents with autistic children. Sorry mom but you are wrong. ABA was sold as a method to recover 47% of the AD population. It doesn't. Many parents will waste away their child's financial protection in adulthood for the promise that ABA has falsely made.

Autism Reality NB said...

Autism Mom Rising thank you for correcting some of the misconceptions about ABA and for speaking out about the benefits your son has received from ABA.

Kent A. said...

The non-verbal guy in Ari Ne'eman's video, was I think actually from Kent Adam's support group.

No that guy wasn't from my support group. The non-verbal guy in my support group thinks Ari is full of shit.

By the way, there has been someone here stalking me and her name is Chelsea. Chelsea is an attractive young lady that claims to have autism and I claimed she was just a geek, can't remember her blog name, something like Catatonia or something. She just posted a video of her, after she has continually called me a liar for saying Ari Ne'eman doesn't care about AD folks. Well here is her video of herself, a cross between a valley girl and someone pretending to have autism. She states in the video "Oh my god, like I just notice I'm rocking". Its actually painful to watch it is so fake: http://www.youtube.com/watch?v=KqhOBP1Md3U

Anonymous said...

Sorry, this person http://www.blogger.com/profile/14559050484005593112

Is this Person in video: http://www.youtube.com/watch?v=KqhOBP1Md3U

This young attractive lady has been trying to tell me that I've got it all wrong on Ari Ne'eman. Judge for yourself.

Kent A. said...

My biggest problem with Harold Doherty is his pushing the false promise of ABA, not to mention he has me all wrong and has a schizophrenic view of what I stand I'm advocating. He is hurting parents and autistic children by pushing this now thoroughly debunked theory of autism recovery. How can a man with an advanced degree continue to push quackery is beyond me.

Autism Reality NB said...

Kent A. I don't recognize anything I have ever said or done in your comments about me. ABA is not "debunked" as an effective autism intervention. To the contrary it is supported by the American Academy of Pediatrics, the Association for Science in Autism Treatment, the office of the US Surgeon General, and many US state agencies including New York, California and Maine.

The October 29 2007 Report of the AAP stated:

"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

http://www.aap.org/pressroom/autismmgmt.pdf

Kent A. said...

I don't think Sebelius' appointments violate the constitution. The HHS is a part of the executive branch of government and Sebelius is the "head manager" of that department and she can appoint or employee people at will in her own department. The only thing that would violate the constitution in this case would be the Congress or Senate appointing people to sit on committees. That would be a violation. However, to head the department does require Congressional approval.

Catatab_Tabimount said...

It is not my fault that I sound like a valley girl! I am from Southern California. Compared with other girls from that area, I actually use "like" and "omg" much more sparingly. I agree that it is annoying language; I would love to shed it off through academic speech practice.

farmwifetwo said...

ABA programs are as different as their practitioners. Therefore it's impossible to claim that ABA is "the best" since there is no actual program offered that is exactly the same.

My youngest son was in a Lovaas special... less the abuse... well, not quite. See he started his Pavlov's Dog Training in October and finally clawed his Male T in May. 5 actions against others, the only "actions against others" he's had in nearly 9 yrs and IMO... he had it coming... His new Teacher, bus drivers, EA's, classmates love him... he's adorable and soooo smart and happy. The day the T was clawed he was removed from my home, the rest walked out in early July b/c my eldest didn't like sitting in the office all day and unable to watch tv or play with his toys since they were in the living room all day. With the help of Comm Living - if not, I suspect the rumour abou them would have been true... they would have called Children's Aid.. they didn't like losing children that were "learning" - the were removed in Aug. This past summer, 4yrs later, I attempted to walk into the building where they are housed at the hospital.... and my hands were shaking and I had to leave...


Which is why when bill C-360 came up... I lobbied against it.

Basic premise of ABA is to show a skill and teach it in parts. NORMALLY developing children are also taught in this manner... it's called "hand over hand" or TEACHING. It doesn't mean, sit at at table 6 to 8hrs per day doing the same thing over and over and over again until perfect.

My youngest is doing amazing... best thing we ever did was get him out that program. He's being taught to his requirements, not some "programs". He is still non-verbal but the verbal apraxia comes daily. Well enough, that you should have seen the sibling bicker yesterday in my house - maybe not "normal" to outsiders but it certainly was "normal" for brothers. Also well enough that he's frustrated that the other children in his Special Ed class don't read or spell as well as he does (Grade level)... So, we've (Teacher and us) decided it's time to work on advanced reading, spelling and dictation. Academically he is btwn regular ed and special ed - he's in special ed for the apraxia, no time to work on it in reg. Ed at Gr 4 - and yes, last spring... his Dx remained non-verbal Autistic Disorder after the testing was completed.

Whereas, ABA refused to let him draw or write until he could make a straight line perfectly. Whereas, if it wasn't in their program, they list of requirements to do first and perfectly... He couldn't do anything else... for hours a day.

My NLD son got 25/26 on his first Gr 6 math test - same test as all the rest - and is doing amazing with Ont PPM 140's help... again ABA used properly, steps taught, token systems when needed... to learn proper social/behavioural skills.

This is education.... Prov pd for ABA in our area is Pavlov's dog training... and it's not appropriate for any child.

farmwifetwo said...

Crap.... post vanished and I haven't the time to retype it.

I for one... would NEVER put my child back into a Prov sanctioned ABA program... Been there... kicked them out and lobbied hard against Bill C-360, which didn't pass.

My happy, smart, learning, non-verbal son.... thanks me daily... by being all these things and not that miserable, upset child I had that year. One day I'll get over the fact I had to wait for him to attack the male T before I found my spine and got them out of my house... I should have done it much sooner.

Anonymous said...

Farmwife-you clearly had a bad non- creative ABA Team. To knock ABA in general is ignorant. Breaking skills down (the discrete trial part) is simpy one aspect of ABA. Natural environment teaching, verbal behavior, theory of mind/executive function training etc. are all parts of a good ABA program. It's a shame you had a robotic team and it left a bad taste in your mouth.

SM69 said...

I would really agree with last Anonymous' comment-

Yes there are poor and robotics ABA programmes, in the same ways there are very poor and robotics TEACH or PECS programs. If a parent see this happening, change and look for something more "holistic". This is a term I don't necessary like or use often, but meaning comprehensive and respectful of a child. There is so much that can be done, but the principles of an effective teaching are all the same;
i.e. what does the child needs to learn (to help him to integrate and be as functional as possible)?
Is that the stage he is at, or should the skill be broken down further?
How should the child be motivated to learn this skill?
How should this learning be generalised and extended to further skills?

Natural environment teaching, physical activities (OT- sensory integration etc), verbal behaviour, socialisation skills etc.

A child can never be failed with good teaching. A child is failed by either no teaching or poor teachers and poor programmes, but not by good teaching.

There is enough information out there for parents to learn about effective intervention and find the right ones. Parents should be empowered to make the right choices for their child and take firm directions on their education and the way they will progress through life.

Anonymous said...

Kent, Chelsea is not stalking you, she's been kind of obsessed with this one railroad engineer in my crew.

And according to him, she is not a fraud. He knows one or two things about frauds, and he says this girl is the real deal. Just want to clear that one up for you Kent.

By the way this is NOT from that fellow Socrates.

Kent A. said...

Anon, if you don't like that word, then say "following me and calling me names in various places and trolling on my YouTube channel". As far as being fake, I'll let users decide from her video "valley girl does autism and carefully rocks for full webcam effect and then wants to make sure the audience doesn't overlook it". It's sad and painful to watch. It's parasitic. When confronted with difficult questions, she runs like a roach, removing her comments calling me a pig and questioning what gives her the right to pretend she knows the very real dangers facing autistic lives. I mean like OMG, gag me with a spoon.

Anonymous said...

Kent,

She is NOT a valley girl. Also, deleting her comments? Come on, I recall you SPAMMING her introduction video.

Also, the big hint she is NOT a fake was my mention of "Locomotive Engineer" and "obsessed" in the same sentence.

Kent A. said...

Anon, she deleted her own comments, I didn't delete them.

I didn't spam her intro video, I commented on it. I think my comments are still there.


Also, the big hint she is NOT a fake was my mention of "Locomotive Engineer" and "obsessed" in the same sentence.

Um, liking trains is not a criteria for autism. Sorry to break it to you.

Anonymous said...

I don't mean a piece of equipment.

I mean AN ENGINEER, the man who drives the train. Also known as the CONDUCTOR to laymen like yourselves who don't give a whit about railroads anyways.

I feel sorry for the guy. The poor fellow's been stalked by this girl since late June, when he joined youtube, a rail forum, and my crew almost simultaneously.

At this point she has 1.) started tailing him on youtube, 2.) spamming the rail forum with her aspie nonsense. I HOPE THIS STOPS, REALLY!!

I believe he goes by AmtrakMan459 or something...I forgot.

From the Anonomyous Conductor, A proud supporter of the American Locomotive Company! (ALCO)