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Saturday, June 25, 2011

Canadian Autism Bills

So I was on twitter yesterday, and a link in a tweet caught my eye. It was a link to this piece.

Curious and worried, I emailed Glenn Thibeault:
Hi, I would like to have more information on the autism spectrum disorder bills, especially on what the national strategy would entail and the reasoning for ABA/IBI, especially when there is very little good evidence that demonstrates that it is effective and beneficial for individuals with autism spectrum disorder.  In fact, many adults with ASD strongly disagree with ABA methods and traditional philosophy.  It would be beneficial for all people, children, teens and adults, if autistic people are included in the creation of legislation that ultimately affect them. (my signature)  

And he responded:
Corina,

I can assure you that I spent a great deal of time liaising with autism groups before bringing these bills forward, and I have personal experience working with individuals with autism as prior to being elected to Parliament, I graduated from the Developmental Service Workers program at Cambrian College in Sudbury and I worked as a behavioural consultation in Vancouver.

Neither of these bills would force individuals to use ABA/IBI; they would simply ensure that no individual who wished to have access to the treatments could be refused by their provincial health service.

The two bills can be found online at:

1)    http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5091810

2)    http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5092022

All the best,

Glenn

Now, as I'm not at home right now and am using my iPod, and it takes me a while to sort through and process what I'm reading on a bigger screen, I was wondering whether anyone had any more information on this? Or even thoughts and feelings about these two bills?

5 comments:

  1. One of the things it looks to me like it's going to do is require early screening tests.

    From C-219:
    "(c) the creation of a national medical surveillance program for autism spectrum disorders, to be managed by the Public Health Agency of Canada."

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  2. A Search for Canada Health Act shows that Thineault has tried this same Private Members Bill on every single session he could, and it has never gone anywhere.

    But looking at the ABA bill, it modifies the Canada Health Act to add
    [(2) For the purposes of this Act, services that are medically necessary or required under this Act include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for persons suffering from Autism Spectrum Disorders.]
    And of course the same en Français.

    That worries me, as to me it implies that these are treatments which can be enforced. I could be very wrong about that, and it might be that this wording just means treatments which the Government can't arbitrarily deny, but still.

    I have read too much of the Judge Rotenberg Center to trust anything to do with ABA.

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  3. I wrote a 27pg epic the last time this came out against it. Will send a message to my MP I'm still not interested.

    What we need is funding for whatever services we require. Not legislated "these are the ones we are paying for only" ones.

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  4. The National Strategy looks rather vague; although, the whole bit about education and training sounds a bit promising.

    Irony is that in his email, Glenn tries to assure me that no one will be forced into ABA. I'm pretty sure a lot of children, whom are the usual recipients of ABA, would love to have that choice. If they are even given an informed choice at all.

    "okay Timmy, do you want to do this dog-training exercises to make you act and look like your peers, or do you want to play with your toys, and we learn together to develop skills in a manner that's natural for you?"

    Anyways, my response letter:

    Hello Glenn, it's very nice of you to provide links to the Bills.

    I am aware of your time as manager of Residential Programs for Youth and Adults with Disabilities. It is conceivable that you had contact with some Autistic individuals there. However, there is quite a spectrum of individuals and autism groups. It would be beneficial to know which autism groups you have liaised with, as to be fully aware of your specific experiences. This is especially important given the rather offensive wording in Bill C-218.

    Far from assuring me, you have deepened my concerns, and have not answered my questions. So I will ask again, as an Autistic individual and voting citizen. Upon which scientific studies and knowledge did you base your decision to make ABA/IBI as "medically necessary", despite the numerous scientific studies that prove it to be no more effective than other teaching methods? Why did you single out ABA/IBI specifically, even though the majority of the Autistic community is strongly opposed to its methods and philosophy?

    Why is it that you are not paying attention to the vast amount of Autistic citizens who oppose this bill, and persist to pass C-218? Especially when your own National Strategy for Autism Spectrum Disorders renders C-218 to be useless should ABA/IBI be an appropriate and safe method of teaching an Autistic individual?

    I would appreciate more specific answers.

    ~Corina

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  5. @farmwifetwo, I don't know about that long of an epic, but I'm writing my MP right now, and so far I've just started my third page.

    As for Glenn, he and I are currently engaged in email correspondence, whereas he appears to be dancing around my concerns and not giving me a clear answer. And I'm not letting him get away with it. I hope to post the email exchange here.

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