[FEAT BC Admin]

Thank you to Andrew in Ottawa for providing this Globe & Mail piece for our discussion group.

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The autism spectrum
Source: GAM – Globe & Mail
Sep 18, 2004

Page: A22
Section: Letter to the Editor
Edition: Metro
Byline: LAURIE PEARCE

Toronto
Re Don't Pathologize Us (letter — Sept. 17): Michelle Dawson is an articulate "defender" of people with autism, but she overlooks the fact that autism is more typically called autism spectrum disorder — it's the existence of that spectrum that makes her opposition to therapy for autistic children so misguided. Many parents of children with autism would be grateful beyond words to have a child who could function as Ms. Dawson clearly does, with independence, a job and the ability to communicate her own ideas clearly and forcefully. Unfortunately, at the other end of the spectrum are those who desperately need, along with love and acceptance, therapy and other interventions to have any chance at an independent life.

Yes, society needs to become more accepting of those who differ from the norm, but a child who sits and rocks all day, or who dashes into the street without notice, or who is self-injurious, needs more than acceptance — that child needs help.

I resent Ms. Dawson's implication that because I choose the difficult and expensive path of providing therapy for my autistic son I am judging him to be "defective" or "inferior." Nothing could be further from the truth.

I admire, respect and love my son with all my heart — he is an extraordinary human being. I don't want to change him, I want to help him have a chance to one day write letters to the editor of his own.
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[FEAT BC Admin]

Nancy Booth wrote:

Hi there, need list of psychiatrists that can prescibe medications that specialize in autistic kids.

thank you

[FEAT BC Admin]

Autism in the news … Globe & Mail:

Andrew Kavchak, the dad who walks an autism protest picket line daily on Parliament Hill, speaks out on how Canada treats children with autism.

https://featbc.org/downloads/Globe&Mail040916.pdf

[FEAT BC Admin]

The ABA cost/benefit research papers Ursula would like to share with our group are now available for download from the FEAT-BC server at this address: http://www.featbc.org/downloads/researchpapers/

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> By Ursula Lee (Lee6) on Friday, September 17, 2004 – 01:57 pm:
>
> To the Michele Dawsons of the world:
>
> There is no question, of course, that ASD is a clinical entity, and
> costly to society in
> terms of purely medical treatment but also in terms of lost productivity
> of those
> caring for affected individuals as well as lost potential productivity
> of the affected
> individuals themselves.
>
> I have several artciles on cost benefit analysis and review artciles of
> ASD as a
> clinical entity which I will be happy to share with anyone who wants. …
>
> Ursula Lee
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[FEAT BC Admin]

To post articles to the discussion board, insert the following line in your post:

Put a "\" symbol (backslash) in front of the phrase "attach{Text description}," where text description is the name of your file., such as "article.doc"

When the message is posted you will be prompted for the location of the attached article on your hard disk.
_________________________________________________
>By Ursula Lee (Lee6) on Friday, September 17, 2004 – 01:57 pm:

>… I have several articles on cost benefit analysis and review … which I will be happy to share with anyone who wants. I just don't know how to post articles on this chat board.

>Ursula Lee
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[FEAT BC Admin]

An Ottawa area dad shares his thoughts with us …
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I have been protesting on Parliament Hill every weekday at lunchtime with a sign that says "Kids with Autism need Healthcare Not Waiting Lists." I have been protesting for the past four months. My son has been on waiting lists since he was diagnosed in December.

Anyway, a person in a motorized wheelchair approached me a while ago and indicated that he was the publisher of a newspaper for disabled persons "Disabled and Proud/Access Now". He invited me to submit an article. Attached is the article that is published in the current edition that just came out.

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Access Now: August 2004 Vol 3 No 4

Autism….A voice from Parliament Hill

lack of Healthcare Services for Children with Autism

I used to be a proud Canadian. I loved this country and believed that we were a caring, compassionate society. I used to believe politicians when they said that healthcare was the number one priority, which made us so superior to the U.S.A. because we had a "universal medicare" system and they did not. Well, all that changed when my youngest son was diagnosed in December 2003 at CHEO with Autism.

For the past four months I have been protesting on Parliament Hill every day during my lunch hour with a sign that says "Kids with AUTISM need Healthcare not Waiting Lists". I have learned a lot about autism since December. I have also learned a lot about the nonresponsiveness, dysfunction and discrimination in the healthcare system. I am no longer the proud Canadian that I once was.

Autism is a pervasive development disorder that affects approximately one in 200 kids. For a variety of reasons that no one is quite sure about, the prevalence rates are rising and were recently quoted in an American medical journal as 1/16! Children who are diagnosed with autism have difficulty communicating, interacting with others, and have corresponding behavioural problems. Many seem to live in their own worlds. There is no known cause, and therefore no known cure.

But there is hope! Since the 1980s, medical researchers have known that when a child is diagnosed with autism, the application of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI therapy can have a dramatic effect on a child's development. When a child is diagnosed, usually at the age of three, there is a window of opportunity to apply the therapy on an intensive basis (up to 40 hours a week) for two to three years. When this is done, studies show that half of the children develop to such an extent that they can enter the school system and function at an average level with no special assistance. The rest of the children make significant development. Without the therapy, the children would be doomed to the tragedy of a life in another world and possible institutionalization.

For a parent of a child with autism, getting the therapy for the child is the most important thing in the world. I thought it would be straightforward here. After all, we have universal healthcare, right? Think again! The Ontario government instituted a "Preschool Autism Program" several years ago but they do not provide it enough funds to do its job. Currently, 500 kids are receiving the therapy and there are over 1,100 on waiting lists. My son is one of them. We were told that it could be a year or even more before our son would get government supplied therapy. But we were also told that we couldn't wait! The best chances of development occur when the therapy is given right away to a young child. To wait and give it later will not bring the same results. You have to do it while their brains are still growing and before the bad behaviours become entrenched.

So my family has done what many others in similar circumstances have had to do. We went to the private sector and hired the specialists to administer the therapy to our son. It is not easy to find the right people. And what is the cost? About $45,000 a year! We applied to the "Special Services at home" Program of the Ministry of Community and Social Services for at least some financial assistance. Guess what? We are on a waiting list there too! And we have no idea when we will get any assistance, if at all. In the meantime, we are facing incredible financial hardship that is unsustainable in the long run.

The Federal government keeps talking about transfer to the provinces of billions of dollars to reduce healthcare waiting lists. The McGuinty government just announced a new "healthcare premium" to do the same. But the provinces do not consider the provisions of ABA/IBI therapy to autistic children to be healthcare. The billions of healthcare dollars flying around don't get shared with autism programs which are dealt with under separate budgets.

Across Canada, from Newfoundland to B.C., parents of autistic children have had to sue governments and file complaints with the Human Rights Commissions to get the government to realize that not providing scientifically based healthcare services to autistic children is discrimination. That is what it has come to in this country. The parents of the weakest and most vulnerable members of our society, disabled children, have to sue to get healthcare!

But parents have been winning their cases across the country. On June 9, 2004, the Supreme Court of Canada (SCC) heard the famous "Auton family case"
from B.C. Even though the BC Supreme Court ordered the provincial government to supply the therapy services, the government appealed to the SCC and every province and federal government intervened against the children. Shame! What are their arguments? That ABA/IBI is not proven to work? But it does! That the courts should not tell the government how to spend money? Where else is a victim of healthcare discrimination supposed to go? The courts are a solution to government non responsiveness. They also claim it is too expensive. But not doing anything to try to help autistic children is even more expensive! Their arguments are just plain wrong. The governments think our choice should be institutionalization or financial ruin. No thanks!

I hope the judges will have wisdom to see that the discrimination against kids with autism has to stop. Until it does, I will continue my protest on Parliament Hill. Feel free to come and join me.

Andrew Kavchak

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[FEAT BC Admin]

We have posted the following so that Chat Board members have the opportunity to "meet" a very courageous father in Ottawa:

Dear Colleagues,

Greetings from Ottawa. My name is Andrew Kavchak. Every weekday at noon I walk down the street to Parliament Hill and parade up and down between the Centennial Flame and the steps leading up to the Centre Block. I carry a sign that says "Kids With Autism Need Healthcare Not Waiting Lists". I usually spend my lunch hour trying to educate the tourist public, and to speak with any journalist or politician I can find. I have been doing it for the past four months and I plan on continuing to do for a long time to come.

My son was diagnosed in December 2003 as suffering from autism. The very next day we hand delivered our application forms to the government offices to get the ABA therapy that is medically necessary for our son. We were told that we were on a waiting list. Well, here we are seven months later, and we are still on a waiting list. Yes, like many of you, we started a private home-based ABA therapy program. We applied to the provincial government under the appropriate program for financial assistance. Again, we were placed on a waiting list.

I used to be a proud Canadian. No longer. But I am so proud of you in B.C.! On June 9, 2004 I protested with my sign in front of the Supreme Court of Canada when it was hearing the Auton case. I had the pleasure of meeting several of you who came to Ottawa to attend the hearings. To me, the thirty families who got together and started the litigation as a means of last resort are nothing short of heroes. I, like you, hope that the Supreme Court judges will issue a reasonable and fair decision as the lower courts have done. As a resident of another province, I hope our provincial government will be forced to wake up and get serious about helping children with autism.

My daily protests have been interesting. I have received many kind words of encouragement and support. Recently, a gentleman in a wheelchair introduced himself to me as the publisher of a newspaper for disabled persons. He invited me to submit an article which I did. I am currently in the process of sending copies to all of the MPs and Senators inviting them to look out their windows at lunchtime and read my sign. I hope that the daily reminder that all is not well on the healthcare front will provoke some of them to
listen and then talk, and then maybe even do something. All I know is that I can't think of anything I would rather do at lunch time.

May God Bless you!
Andrew Kavchak
sdelbianco@sympatico.ca

[FEAT BC Admin]

In the last 48 hours we have had some technical difficulties with the Chat Board. We sincerely
hope these technical difficulties are behind us. At this point, please feel free to post. If in the
next month the Chat Board goes down, understand that we are working to rectify the problem
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Sincerely,

Board Admin

[FEAT BC Admin]

test

[FEAT BC Admin]

Advisory from the Canadian Public Access Channel (CPAC):

The first 4 hours of the 5 hour Auton case at the Supreme Court of Canada will be airing on CPAC Saturday, June 19, 8 AM to 12 Noon Eastern time, and repeated June 20 from 1 AM to 5 AM ET. The fifth hour will be aired the following week on June 26, 8 to 9 AM Eastern, and repeated June 27 from 1 to 2 AM.

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