[Andrew Kavchak]

Hi Folks,
It me, that protesting guy in Ottawa. Just an update for those of you who are interested…last week a number of parents joined me in front of the Conference Centre when the Premiers and the PM negotiated their health accord. I still cannot believe how many billions are being given for reducing waiting lists for diagnostic stuff, etc…but that the list does not include autism. However we did get quite a bit of press coverage, and the misguided letter of Michelle Dawson in the Globe last Friday just served to show that we are getting somewhere. Thank you to all those who wrote to the Globe in response. The letter in Saturday's paper was great. On a related note, the coverage in Ottawa continues. "The Hill Times" is a weekly magazine in Ottawa that is very popular with politicians, their staffers, journalists, lobbyists, and bureaucrats. This week's edition that just came out today has two pictures of me with my sign that "Kids With Autism Need Healthcare Not Waiting Lists". One shot is in front of Parliament and the other in front of the Conference Centre. There is no article, but the three lines in the caption and the pictures say it all. I know people are looking at it because today while protesting a member of the Speaker's staff indicated to me that she and several of her office colleagues were talking about it. I hope the Supreme Court of Canada has a subscription!
I am next hoping to galvanize some parents to come out and join me in front of Parliament when the House resumes sitting on October 4.
Cheers!
Andrew

[Andrew Kavchak]

Hi Folks,
In case you are interested, this is my response to Michelle Dawson's letter that I sent to the Globe and Mail today. For those so inclined, please send the Globe your letters too.
Andrew Kavchak

I regret that you chose to publish the letter of Michelle Dawson (Don't Pathologize Us – Sept. 17) in which she vilifies me and my attempts to get my three year old autistic son off the healthcare waiting lists so he can get medically necessary therapy to treat his disorder. Her perverse misrepresentation of the issues involved in understanding the nature of autism and the best treatment known to humankind have only served to poison the well of policy debate in this area of healthcare delivery. Her error-laden intervention against autistic children in the recent Supreme Court of Canada hearing of the Auton case from BC (June 9, 2004) was particularly offensive to parents of autistic children because it demonstrated that in addition to the daily struggle of having to deal with children who are in their own worlds, as well as the challenge of litigation against insensitive and lethargic governments who shirk their healthcare delivery responsibilities, we must also deal with the arguments of those who oppose all help for those born with developmental disorders, even after the medical research community has proved that treatment can help autistic children become increasingly functional. As a parent of an autistic child, seeking out the best medical treatment for my child is my duty and responsibilty, precisely because my son has value and worth. Those concerned about prejudice against autistic people in society should pour their scorn on the Ministers of Health for their not addressing the long autism treatment waiting lists in their recent accord rather than dumping on parents who are trying to help their children and prevent them from becoming lifelong burdens on the state. Ms. Dawson is apparently able to fend for herself, but that is not the case for the overwhelming majority of autistic adults.

[Andrew Kavchak]

Hi Folks,
As many of you know, I have been protesting daily on Parliament Hill in Ottawa with a sign that reads "Kids With Autism Need Healthcare Not Waiting Lists". This past week several parents of autistic children joined me in front of the Conference Centre and we received some great publicity and coverage in the Ottawa Citizen and Ottawa Sun, National Post and Global TV. Yesterday the Globe and Mail published an article about healthcare wait lists with some quotes from me and a picture of some protesters and an autistic child in front of the Conference Centre. Well, the notorious Michelle Dawson has struck again with another truly idiotic letter to the editor in today's Globe and Mail (reproduced below). For those of you who are so inclined, please consider writing a letter to the editor of the Globe in response. Send your letters to "letters@globeandmail.ca". Remember to include you name, address and daytime phone number. Limit your letter to no more than 200 words.
Thank you.
Andrew Kavchak

Don't pathologize us
Source:Globe & Mail
Sep 17, 2004
Page: A16
Section: Letter to the Editor
Edition: Metro
Byline: MICHELLE DAWSON
Montreal
Re We're Still Going To Be On A Waiting List (Sept. 16): I agree with Andrew Kavchak that the way autistics are treated in Canada is sickening. Literally.
Activists such as Mr. Kavchak have spread the expedient lie that autistic people are sick, and that without one specific treatment very, very early in life we are doomed. The treatment
Mr. Kavchak wants paid for, at the expense of those requiring such procedures as heart surgery, is no more medically necessary than cochlear implants. Many deaf people strongly oppose the
idea that they are defective or inferior and must be fixed or cured, just as many autistic people reject similar bigoted views of autistics.
Autistics do not appreciate being pathologized so that Mr. Kavchak's son can be intensively trained at public expense to be or resemble someone he is not. If the idea that autistic people may have
value and worth and possibilities as autistic people — rather than being horribly sick and defective — strikes Mr. Kavchak as absurd, he is merely registering his own prejudices.
Mr. Kavchak should make his case without making us sick.

[Andrew Kavchak]

Hello Everybody,
Please see the article at page A4 of today's National Post about autism.
Thanks
Andrew Kavchak (Ottawa)

System frustrates father of autistic boy
National Post
Sep 13, 2004
Page: A4
Section: Canada
Edition: All but Toronto & Ottawa
Dateline: OTTAWA
Byline: John Ivison
OTTAWA – The federal and provincial politicians gathering in Ottawa this week — the collective noun for which should perhaps be "a disputation of…" — would be well served by taking some air to talk to one of the protesters staking out their televised reality show.
Andrew Kavchak, an Ottawa bureaucrat by profession, is also the father of an autistic three-year-old, Steven, and perhaps embodies what this health care summit should really be about — efficiencies, structural reform and creative thinking.
On Friday, I attended two consecutive "technical briefings" –one by the provinces; the other by the feds — which were primarily concerned with escalator clauses, fiscal imbalances and equalization payments. The subtext of the provincial briefing, was, if Ottawa will just meet the "Romanow gap" of 25% of total health care funding, we will have created a new hale and hearty Jerusalem.
However, a chat with Kavchak — who was making his daily vigil on Parliament Hill while brandishing a sign that reads Kids with Autism need Health care not Waiting Lists — quickly disabuses one of that notion. His son is one of 1,100 children in Ontario on a waiting list for government-funded therapy. In the meantime, Kavchak is having to fund the $50,000 annual treatment for 40 hours a week of applied behaviour analysis therapy from his own pocket — a financial burden he says is bankrupting him.
Around 500 children in the province are lucky enough to be receiving financial assistance from the province, at an average cost of $78,000 per child for 20 hours of therapy. Kavchak's frustration is that he says parents like him can provide twice the number of hours of treatment for around two-thirds of the cost — if only the province would hand over a cheque and let him seek out the therapy.
"If you give the money to the parents, that will go a long way to getting the job done," he said. "If the government can't provide the medically necessary treatment promptly upon a child's diagnosis, they should at least provide us with the funds to seek the treatment in the private sector.
"Until such time as the public sector can eliminate the waiting lists and ensure that autistic children get the treatment they need without undue delay, the government should allow and encourage the private sector to flourish."
Satan will, of course, be skating to work before that happens. An Ontario government spokesman gamely tried to defend the indefensible by saying the private therapy market is highly variable in terms of quality and that even simply handing over cheques to parents would require some level of bureaucracy to administer. The province is, he said, spending more money on autism and is in the process of hiring new therapists and psychologists.
Unfortunately, none of this is likely to be of much use to Steven Kavchak, who is 3 1/2 and will likely be brushing up against his sixth birthday by the time the system comes to his aid. At this point, despite another undelivered Dalton McGuinty election pledge to change the rules, he will automatically be cut off from the pre-school autism program (for reasons too Byzantine to go into, autism is handled by the Children and Youth Services, not the Department of Health).
The case study offers up the human face of this health care summit and the importance of getting it right. Perhaps the premiers should be less concerned about unfeasible pharmacare plans and more attentive to the question of how many other Steven Kavchaks are there in their jurisdictions being failed by a system wearing philosophical blinkers?
Undoubtedly there is a major fiscal component to the health care debate — senior federal officials admitted on Friday that there is a need to inject the bulk of its new cash into base (or continuing) funding, rather than into one-off payments earmarked for specific purposes.
But there is scant discussion about making sure that any new funds poured into the system are not wasted. Vested interests, which appreciate that every dollar saved by using more cost-effective procedures is probably a dollar of their income, have successfully transduced provincial and federal governments into a Wahibbist-like attachment to state-run health care.
In such an atmosphere, who really believes that medicare will be fixed for a generation by week's end?
jivison@nationalpost.com

[Andrew Kavchak]

Hi Folks,
Just to let you know, a wonderful article appeared on the editorial page of the Ottawa Citizen today.

It's crucial for autistic children to get help immediately
The Ottawa Citizen
Sep 7, 2004
Page: A12
Section: News
Edition: Final
Byline: David Ljunggren
At first glance, there seems nothing unusual about the three-year-old boy as he bounces up and down on a small trampoline at home, his eyes glued to the television. But there is something terribly wrong with this picture.
Little Steven Kavchak has autism, a serious mental disorder that affects one in 200 children and locks sufferers into their own worlds, unable to communicate, show emotion or cope with everyday life. Although there is no cure, evidence shows that autistic children can be helped greatly by intense behavioural therapy, especially at the age of two to five, when the brain is still growing and can — putting it simply — be rewired to work better. The therapy costs at least $40,000 a year, but Ontario's funds are limited and the list of those in need is long. Steven has been waiting for treatment for nine months.
"This therapy needs to be administered to a child immediately following a diagnosis. Every week, month and year on a waiting list is a tragic loss," said Steven's father Andrew, appalled the health-care system is letting him down when he needs it most. The good news is that Steven has been getting 30 hours a week of therapy from specialists since January. The bad news is that the Kavchaks are paying and money is running out. If the treatment stops, Steven's chances of attending regular school are remote.
This story could be even gloomier, since Ontario at least provides some funds for therapy. Parents seeking support elsewhere have been forced to sue provincial governments, some of which claim the treatment is educational rather than medical and does not qualify for funding. Others say the therapy is ineffective, an approach that Kavchak dismisses as ludicrous.
"Say hello to our guest," he called out as we entered the room. "Hello," replied Steven cheerfully, continuing to bounce as he watched television. "That's good — he wouldn't have been able to say that a few months ago," beamed Kavchak, citing studies that show 50 per cent of autistic children who undergo early therapy can attend school without needing further help.
Effectively treating children with disabilities so they can go to school and survive without being teased or falling behind is critical, says Pam FitzGerald, chair of the Ottawa-Carleton Assembly of School Councils. "Politics is a short-term game. There is little incentive to put into place expensive programs for children at a young age. But if you spend some money now, you save a lot later," she says, noting that children receiving early help are less likely to end up in jail or on long-term welfare. FitzGerald says everyone benefits because the more help affected children receive, the less likely they are to cause disruptions in class.
There are also financial reasons to do more. A study in 2002 said the cost of providing therapy to all autistic children in Ontario would be $2.8 billion over their lifetimes while giving no therapy and then paying their welfare expenses would total $11.2 billion. "What further arguments does one need to realize that eliminating waiting lists is not only the moral thing to do, but also in our economic interests?" said Kavchak.
Help could be at hand. In March, Ontario's Children and Youth Services Minister Marie Bountrogianni unveiled a plan to help autism sufferers. "We recognize the need to provide more services to more children," said her spokesman, Andrew Weir, adding that Ontario would this year double autism funding to around $80 million and planned to cut waiting lists by hiring more therapists.
This is of little immediate consolation to Kavchak, who spends most lunch hours protesting on Parliament Hill, each time updating his placard with the number of days Steven has spent on the waiting list. Often he walks alone, awash in grim thoughts. "The impact of autism on families is an absolute disaster," he said, adding that up to 70 per cent of families where a child has a disability eventually break up. Kavchak, who worries that he and his wife are not paying enough attention to Steven's five-year-old brother, plans to demonstrate next week outside the Ottawa building where Prime Minister Paul Martin and the provincial premiers will hold their health-care summit.
"I used to be a proud Canadian. I used to believe politicians when they said health care was the No. 1 priority and that our medicare system made us so superior to the United States. My family has now found out the hard way just what a horribly dysfunctional and non-responsive system we have," he said
David Ljunggren is the Reuters national political correspondent in Ottawa.

[Andrew Kavchak]

Hi Folks,
Its your man on the Hill again (the Parliament Hill protester in Ottawa). Yesterday on the National CBC news Peter Mansbridge invited Canadians to submit their health stories to CBC at "national@cbc.ca" so they can do a story before the next Premiers' healthcare summit next month. Please considered bombarding them with your concerns about autism and the irresponsible opposition to the Auton court case. Below is what I sent them this morning.
Thank you.
Andrew Kavchak

Hello,

On last night's National news Mr. Mansbridge invited Canadians to submit issues relating to healthcare for discussion prior to the Premiers'
healthcare conference with the Prime Minister in September. I have an issue that I would like to raise with you and hope that you will do a
story on this.

My three year old son, Steven, was diagnosed at the Children's Hospital of Eastern Ontario (CHEO) last December 8, 2003 as suffering from autism. It
has been now 261 days since then and we are on waiting lists. We have not received either one cent's worth of medically necessary therapy treatment or financial assistance so far. The situation is shocking and tragic because it is the same story for autistic children across Canada. The weakest and most vulnerable sector of our society, disabled children, are very poorly dealt with by health authorities.

Autism affects one in 200 kids. It is a pervasive developmental disorder that results in an inability to communicate (non-verbal), poor social
interaction, and behavioural problems. Autistic kids appear to be in their own world. In the past they were written off as being retarded and
institutionalized for being hopeless cases. Although the cause and cure for autism are not yet known, the best treatment has been known since the 1980s. Medical studies have shown that the intense application of Applied Behaviour Analysis (ABA) therapy treatment using the protocol developed by Dr. Ivar Lovaas at UCLA in the 1980s results in 47% of autistic children
developing to such an extent that they can function at the average level and enter school without any need for special supervision. This is what every parent of an autistic child dreams of! The rest of the children make huge gains in their development. But do you think it is easy to get this treatment? Not in Canada!

In our case the province of Ontario created a "Preschool Autism Program" a few years ago but does not fund it enough. As a result there are over 1,000 kids on waiting lists. We applied the day after our son's diagnosis and are still on a waiting list. They have lists for the therapy treatment and for the alternative "direct funding" to pay for it from the private
sector. We are on the waiting lists for both. We were told that the medical science suggests that it is important to do the therapy right away
upon diagnosis because the child's brain is still growing and there is the best opportunity to achieve results when the child is young. So we
resorted to the private sector (the so-called "second tier" that is not supposed to exist according to our national Minister of Health). We resorted to it by necessity, not choice. The result? We have costs of
about $50,000 a year to face. My wife and I don't earn enough to cover the costs and are depleting all our resources. We applied for some financial assistance to the province's "Special Services at Home Program" and were told that we qualify. Other similar families have received between $5,000 – $8,000 a year in the past. Well, it turns out that we have been on a
waiting list for that since December 2003 as well.

Across this country, from Newfoundland to BC, parents have had to sue their provincial governments to get therapy treatment for their autistic children either provided for or paid for by provincial governments. Many parents have filed Human Rights Commission complaints. I am not aware of any court case where the parents lost. In each case the courts have found
ABA treatment for autism to be "medically necessary" and ordered governments to supply it or pay (it is discrimination if they don't). So
why do parents who are already psychologically exhausted from having a disabled child, financial strapped and facing bankruptcy, also have to go to court as a last resort to get medicare in this country for their child?
It is interesting to note that in BC several years ago a group of about 30 families got together and started the AUTON class action lawsuit against the provincial government. They won at the BC Supreme Court. But instead
of paying for therapy treatment, the government appealed to the BC Court of Appeal. The government lost again! Instead of doing the honourable, moral and legal thing, they refused to comply with the order to pay and
appealed to the Supreme Court of Canada. The AUTON case was heard by the Supreme Court of Canada on June 9, 2004. Every provincial government and the federal government intervened against the kids. What a shame and a
scandal. On top of it all, the current federal Justice Minister, Irwin Cotler, who has a "human rights" reputation, did not call off his lawyers.
Similarly, the current federal Health Minister, Ujjal Dosanjh, was the former BC Premier who could have stopped the AUTON litigation but instead pursued it. And now he portrays himself as the defender of medicare and is opposed to the private sector's intrusion. What a scandal!

As a result of this situation and my own family's difficulties, I have been protesting on Parliament Hill every day since March during my lunch hour from 12 noon to 1 pm with a sign that says "Kids With Autism Need Healthcare Not Waiting Lists". I apply for monthly permits and try to speak to politicians who walk by. I also educate the public and try to raise awareness of this problem. Attached is a photo of my protest and my sign. Also attached is an article that I wrote for a disabled person's newspaper called "Access Now". It is self-explanatory.

I already applied to Ottawa City Hall for a permit to protest on the sidewalk in front of the Conference Centre during the healthcare
conference. I will be there. Please feel free to contact me if you would like to do a story on this. I have lots more that I could tell and know of other interesting parents
with the same problems.

Thank you.

Andrew Kavchak

[Author]

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