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Andrew Kavchak
ParticipantHi Folks,
Well here’s a great example of one parent in Ontario getting some media publicity for the cause and putting pressure on the federal government.
Unfortunately, the quote at the end from the spokesperson for the Minister of Health makes it pretty clear that the federal Liberals are unlikely to adopt any significant autism policy in their election platform. The suggestion that they want to help and that’s why they invested in a “national platform” to help find resources may be interpreted as quite a brush off. The announcement of $10 million for a website was made in the February 2018 budget….we’re now in July 2019….and where’s the website? Even if the website turns out to have lots of information on it, how is that going to help get autism treatment covered by Medicare?
And the news in Ontario….the new Minister of Social Services has announced a new development on the autism file. The province will start posting autism wait list numbers online and update them monthly. Does the Ministry of Health do that for any other medical service?
ParticipantHi Folks,
Well, just when you thought you heard it all, a new media story fuels the concerns of those who believe that government engages in too much deliberate distortion, misrepresentation and propaganda in their efforts to “manage” the autism file. Dr. Freeman wrote a book years ago about “Science for Sale in the Autism Wars” about how government witnesses in the Auton court case misrepresented the science when fighting over evidence. By now there is more than enough history and material for any doctoral student of “mass communications” or “public policy” to write a major thesis evaluating the ways in which many successive governments have manipulated the autism file in their communications. By now we should all be able to recognize words and trends, patterns and “repetitive behaviour” that ultimately do nothing but postpone action and preserve the status quo in one way or another (all while giving the public the impression that the government has the matter on the agenda of priority items and is trying to proceed in a most responsible and competent manner, etc.).
One of the elements of the story below is the reference to multiple “reviews”. I mean, how many times does a government need to review the state of the autism program before embarking on steps to improve it? It seems that there are really two autism programs in Ontario (and elsewhere). One is the supposed “Ontario Autism Program” which is supposed to serve children with autism, and the other is the mercurial and hard to pin down “Ontario Autism Program Review Program” which involves the regular appointment of individuals or groups to conduct reviews, consultations, etc. This includes the behind-the-scenes appointment of people to write internal reports for the Premier and the appointment of “advisory committees”, and even the involvement of other offices such as the Auditor General. It would appear that the review of the autism file has become an industry in itself. Perhaps the time has come for the Premier to add a new chair at the Cabinet table for a new “Minister for the Perpetual Review of Autism Programs and the Deliberate Obfuscation of Autism Communications”.
Check out this article in the Globe and Mail with the headline: “Ford government deliberately spread misinformation about autism program, internal review says”.
https://www.chch.com/leaked-autism-file-leaves-families-complaining-about-ford-government/
ParticipantHi Folks,
Every once in a while there are some real weird headlines in the media relating to autism. I know reporters have to report and the business of the media is partially entertainment, which sometimes involves the dissemination of stories that are not very convincing. But maybe they are. Some. But not all. Take for example a recent story out of Calgary.
A priest apparently linked a few different things with autism, or implied that they were the cause of autism. Here’s a quote from the story: “Alcohol, cigarette, beedi [Indian cigarettes], narcotics, Pan Parag [chewing tobacco], adultery, masturbation, homosexuality, porn; if you are addicted to these, I say to you in the name of God … when you get married and have children, there is high possibility of bearing these types of children.”
Well, if addiction to the listed activities does not cause autism, maybe it’s…processed food.
https://www.medicalnewstoday.com/articles/325546.php
https://www.medscape.com/viewarticle/914911
While some outlets may be telling us interesting theories or research results about the causes of autism, other stories about the “cures” can be perplexing. Did you see the latest about bleach?
https://www.vox.com/2019/6/19/18684109/autism-vaccines-treatment-cure-bleach
Some people (like me) think that the problem with the delivery of autism treatment in Ontario (and in many other provinces) is that it is not done by the Ministry of Health and covered by Medicare. I always considered this the core problem in Ontario. Yet, in all the recent brouhaha in Ontario many parents have become activists and are protesting and getting media attention. But rarely in the stories or interviews do I hear a reference of the need for Medicare to cover autism treatment. One of the most recent media stories suggests that according to one parent, the main problem is communication and the need for the government to do it better.
https://www.cbc.ca/news/canada/hamilton/autism-ontario-1.5188719
This reminds me of the line in a Simpson’s episode where Homer distills the problem in most marriages as being “communication”, and then elaborates by specifying “too much communication!” Clearly in some situations communication will help resolve a dispute. I’m not sure how “better communication” from the government will solve the discrimination in Medicare. But evidently that’s not a problem worthy of mentioning for some.
And every once in a while one comes across an article which revives one’s faith in the cops to catch the robbers. In this case, an autism fraud in the millions has come to an end with two ladies spending time. How many other scams may be ongoing and ripping more millions out of the system?
https://www.heraldonline.com/latest-news/article231939028.html
The grass always appears greener on the other side of the fence, and sometimes it is. But then again, sometimes, on closer inspection, it is not. Take the Netherlands for example. Great place. Clean, healthy, wealthy, wise, everybody is tall and slim, etc. But what’s this?
https://www.spectrumnews.org/news/netherlands-law-limits-childrens-access-autism-services/
Sounds like a familiar theme….limiting children’s access to autism services by law. Sounds like their grass may not be that green after all!
ParticipantHi Folks,
I just sent this letter below to the Ottawa Citizen. Hopefully it will be published. Yesterday I heard on the radio an interview with Lisa MacLeod and although she tried to put a brave face (and spin) on the fiasco that she created in the autism file, she actually sounded like she broke down in tears when she related the story of the death threat against her (there were periods of silence on the air as I assume she was trying to regain composure). It was truly one of the saddest interviews I ever heard. Hopefully she will have a lighter time of things in her new culture and sports file and at least create a lasting positive legacy among our community by opening up a fair share of opportunities for autism in sports and culture, etc.
Dear Editor,
Re: Premier Ford’s Cabinet ShuffleShortly after Lisa MacLeod was first elected to the legislature in a 2006 byelection she attended a demonstration that I organized in front of Premier Dalton McGuinty’s constituency office. As a parent of a child with autism who was not getting treatment under OHIP (Medicare), I entered the world of political activism and was glad to see the newly-elected opposition MPP attend the rally to offer her support. At the demonstration Lisa MacLeod took the megaphone and stated that she learned a lot about the challenges of the autism community from her NDP opponent Laurel Gibbons during the campaign and was going to be our autism community’s advocate in the legislature.As a member of the autism community who has for many years looked upon changes in government and ministers as reason for hope, her bungling of the file over the past year was a profound disappointment and her recent removal from the portfolio a sad ending to a wasted opportunity which was over a dozen years in the making. Many parents have come together to express their children’s need for access to treatment. Clearly, something was not working and her planned changes were perceived as making things worse. However, the solution which the Premier should have considered was not removing Minister MacLeod from the Ministry of Community and Social Services (MCSS), but removing the “Ontario Autism Program” (OAP) from the MCSS and transferring responsibility for autism treatment to the Ministry of Health where it appropriately belongs. Autism is a neurological disorder and access to treatment following a child’s diagnosis is a healthcare issue. Where is the logic in putting the program in the hands of bureaucrats who deal with welfare, disability pensions, and human trafficking? What would be the reaction of the Cancer Society if the Premier said that from now on all cancer treatment services were going to be the responsibility of the Ministry of Agriculture? The government has perpetuated this ongoing calamity and attempted to generate some credibility and legitimacy by conducting another round of public consultations and appointing another advisory committee. It is my sincere hope that the government will acknowledge and positively respond to the key request that parents like me have been making for decades: “Medicare for Autism Now Please!”.ParticipantHi Folks,
The Ontario Autism Coalition posted on their website their report with recommendations to the government of Ontario. It is 27 pages long. I did not find the word “Medicare” anywhere. I did come across three references to “OHIP” (the Ontario Health Insurance Plan), and one (at page six) says that more than half of survey respondents would like “autism services covered by OHIP”. I have not found any corresponding recommendation or any clear statement that they would like ABA treatment for autism covered by OHIP. The section on healthcare at page 14 does not mention it. Perhaps I missed it. If someone sees something like that anywhere in the report, please let me know.
ParticipantHi Folks,
Well, as suspected, Ontario Premier Doug Ford just shuffled his cabinet and the Minister who was responsible for the Ontario Autism Program (along with all the other social and welfare programs in Ontario) is no longer doing that job. She has been “demoted” to the Ministry of Tourism, Culture and Sport. I kind of suspect she is relieved. Pity. She first came to an autism demonstration that I organized in front of Dalton McGuilty’s office back around 2006 or so and has had plenty of time to learn about the autism file. Unfortunately, the announcements and her handling of the file all seemed to blow up in her face. Unfortunately, the program is once again under review by an advisory panel and more changes are expected this summer. However, she won’t be at the helm to finish a job that she started. Is the community better off with the “new guy” (Todd Smith)? Time will tell, but I suspect that in many ways we are back to square one. All that lobbying the previous Minister and attempts to educate her are all history and irrelevant. Now there’s the “new guy” to lobby educate. Did we make it to first base yet? It’s hard to tell. I think we’re still at bat and just have a new pitcher to deal with.
On a separate but somewhat relevant note, something else happened in the Twitter universe recently that is worth of note with respect to the federal parties. First, we know what the NDP election platform says about autism (one line about developing a national autism strategy). So far, the Liberals have said nothing about autism in the context of this election (or any other context for that matter) so I suspect it is reasonable to assume that they won’t say much, if anything, about autism in this election campaign.
And so where are the federal Conservatives? Well, a woman in Ontario recently posted a video of her meeting Andrew Scheer at some public event. She asked him about his policies on autism. He replied by saying something about they keep “pushing” and Mike Lake is the “point man” on the issue. Good grief! I remember when I first went to his office when he was first elected in 2006 and came out of the meeting thinking that not only was he unlikely to be helpful, but he may turn out to be an obstacle. Well, after that Twitter post of the video, one parent posted a message asking Mike Lake what can we expect from the Conservatives?
Mike Lake then posted again the video from June 21, 2017 when three opposition party leaders spoke in favour of his “Canadian Autism Partnership” project, suggesting that they “stood together for Canadians living with autism”. He then added that back in 2017 the opposition parties were in favour of this CAPP thing, and only the Liberals were against it. Unfortunately, he did not mention that the Conservatives only proposed the CAPP thing after their nine years in office was already over. If they were so much in favour of it, why didn’t they implement it while they were in power? Despite this obvious problem that really throws into doubt his credibility, he added “Our support for Canadians w/ autism is steadfast. You can count on it.” Those kind of responses are the kind of thing that my stomach turn. They strike me as shameless deceit. Fortunately, not all parents are buying into the baloney. One parent responded with:
“Your colleagues in Ontario promised us they were behind us 1000% too… And we all know how that’s worked out. Combine that with the fact you help shut down bill C-304 in 2007 and I have a hard time believing much of what you’re selling.”
Mike Lake replied by proposing that the parent send him their phone number so he can call and they can “chat about it”. This is part of Mike Lake’s MO. I can’t find any written declaration of his with respect to where he stands on autism public policy and what he would like the federal government to do. I can’t find any written comment of his anywhere about the Liberal 2018 budget provisions on autism, or the CASDA “blueprint” for national autism strategy, or the NDP’s election commitment, etc. What does Mike Lake stand for and try to promote when it comes to autism? If his leader refers to him as the party “point man” on autism, what does the point man have to say? Whatever it is, it seems he only wants to say it verbally and in private to one person at a time over the phone.
Another person then posted this message: “It’s becoming clear that talking & chatting has become code for delaying and stalling. How can politicians expect families to continue to have any trust? “We need to stop Trudeau”, & “We need to get elected first” R not acceptable responses.”
Then someone followed up with another question to Mike Lake: “Has your plan for the CAP changed any from the version asked for in 2017? – $19 million over 5 years – rejected by <s>@</s><b>AutismCanada</b> https://www.globenewswire.com/news-release/2017/06/27/1376135/0/en/Autism-Canada-rejects-Canadian-Autism-Partnership-Project.html After what <s>@</s><b>fordnation</b> <s>@</s><b>MacLeodLisa</b> have done to the autism program in Ontario, Canadians will need a stronger commitment.”
And how did Mike Lake respond? “Patrick, CAP had broad community support in 2017 (anonymity is simply impossible). $20M was the expert working group’s ask after consulting for nearly two years on it. Glad to chat to hear what you’d recommend to build on the expert advice. I think you have my number?”
Again, Mike Lake proposes to chat on the phone. Mike Lake’s memory is somewhat faulty. The CAP business plan requested $19 million (see page 5 of the executive summary) https://www.casda.ca/wp-content/uploads/2019/02/CAPP_executive_summary_EN.pdf In the subsequent Liberal budget the government allocated $20 million to the creation of a still non-existent website and anti-stigma campaigns, etc. The Liberals evidently wanted to demonstrate that their largesse exceeded that of the Conservatives (and Mike Lake now appears to have appropriated the figure).
His statement that CAP had broad community support seems to be part of this evolving mythology. Not only did Autism Canada issue a public statement withdrawing their support for CAP, they also withdrew from the “alliance” that was promoting the thing. Why? Although they refer to lack of financial disclosure, transparency and measurable “deliverables”, any objective evaluation of the proposal would have to conclude that the creation of the CAP bureaucracy to engage in “issue identification” was not committing either the federal or any provincial government to actually doing anything to change public policy (for better or worse). In other words, while politicians would check off the autism box and say “done!”, nothing would change in the lives of Canadians living with autism. This failed project, which the Conservatives did not even implement while they were in power (instead setting up a two-year consultation exercise to come up with a “business plan” after they lost the subsequent election!) has emerged as the Holy Grail of Conservative autism policy in years gone by. If the CAP project was so great, Mr. Lake, why don’t the Conservatives announce a commitment to implement it as part of their election platform? Is there any reason why the Conservatives don’t want to revive the idea? Could it be that behind closed doors they know it was a lousy idea in the first place?
ParticipantHi Folks,
Well, autism is still in the news and obviously becoming a pain in the Ontario Premier’s neck, butt, head, etc. The Premier is expected to announce a Cabinet shuffle this morning. Many people in the autism community have called for the Minister responsible for the autism treatment to go away, and I suspect many are placing bets on whether she will be switching responsibilities in Cabinet with someone else.
However, even with all this suspense building up, this is already shaping up to be a “newsome” day as some of the autism news headlines this morning are already thought-provoking. Despite news that several hundred workers in the autism business are being laid off in Ontario, we have these news stories. First, one suggests that the Ford government is OK with the loss of employment of autism workers and says there will be more. Is anyone actually happy to read such stories?
“Ford government defends layoffs at autism centre, warns more to come”
Notwithstanding the loss of employment of people on the front lines in the autism business, the Premier asserts that his government is opening the taps when it comes to financial resources for the autism community.
“Doug Ford says province is ‘pouring money into autism’”
So how is it that there is a new Niagara Falls of millions of dollars being “poured” into autism programs and people are being laid-off? Perhaps it is because the resources are not actually getting through to the parents. Perhaps it is because on the ground in the homes of the community people few people, if any, have actually received any of that “direct funding” that was promised months ago. Perhaps it is because people who have been on waiting lists for years are still waiting for something that is now supposed to be much less than what they were told they would receive when their child was diagnosed. One headlines that suggests a painful decision that some parents have to make is this one:
“‘Which kid am I leaving behind?’ Parents question changes to autism treatment funding”
So parents have been protesting. We live in a democracy, don’t we? Does the squeaky wheel not get the grease (eventually)? Well, according to the Premier, he does not get it. How could the government “pour” all this still-unseen money into the autism treatment program, and people still have the nerve to demonstrate!?!? Apparently, this phenomenon “boggles his mind”!
“Protests over autism changes ‘boggles my mind’: Ford”
https://ipolitics.ca/2019/06/19/protests-over-autism-changes-boggles-my-mind-ford/
It seems to me that the way his government is dealing with the autism public policy file his mind is going to get “boggled” a bit more before the “boggling” recedes and goes into remission. But who knows? If there is a new Minister appointed today who actually manages to mismanage the file worse than the still-current Minister, then there might be a whole lot more “boggling” of minds going on for the rest of this government’s mandate.
ParticipantHi Folks,
Well this is turning out to be a lots-of-news type of day. Back in February the Ontario government announced changes to the Ontario Autism Program and you know about the parent protests and the government’s new round of consultations.
However, here is an update. The Ontario government’s plan apparently involved providing all the families on the waiting list for treatment with some cash to pay for treatment directly themselves starting in April (the amount of the cash is one of the big things parents are complaining about – it is a mere fraction of what many, if not most, kids need). Well, apparently no one has yet received any money at all (and we’re in mid-June!). One result of this situations is that one of the ABA/IBI centres in Toronto has just given 291 members of its staff lay-off notices!!!
ParticipantHi Folks,
The federal Liberal government just announced their “National Dementia Strategy” for which they already announced millions in funding in the last budget months ago.
The strategy can be found here: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html
Will any of the MPs who say that autism “is a provincial responsibility” (as Harper used to do) express opposition to this dementia strategy? Actually, let’s be honest. If dementia involves forgetting the promises you made just a few minutes ago, then every MP has dementia big time. No wonder they passed a law and moved on that before the election!
ParticipantHi Folks,
Shortly after posting my last message about the federal NDP’s election platform reference to consulting, developing and implementing a National Autism Strategy that would address research, services, employment and housing issues, another thought struck me about the problematic wording of the commitment.
Why is it that we always seem to be struggling to get to first base? Why is it that we can’t get to second or third (not to mention home plate)?
When Mike Lake and CASDA came out with their “CAP” project, it was to engage in “issue identification”. The recent CASDA blueprint calls for consultations. The Ontario government previously indicated that it engaged in consultations when it made its disastrous announcement in February, and was more or less forced to start over with a new round of more extensive consultations. Now it just appointed an “Advisory Committee” to review the results of the consultations. Similarly, the provincial Ontario NDP just held their own autism consultations and issued their own report about “what we heard”, bla, bla. Good grief! The Supreme Court of Canada heard the Auton case in 2004 and issued its decision about ABA autism treatment under Medicare in November of that year. The court unanimously said it is up to the legislatures to decide whether or not autism treatment should be covered by Medicare. This issue has been an outlier on the public policy landscape for at least 15 years. Is it not time that a political party would say something along the lines of: “We know what the issue is, we have studied it for a long time, this is what people have been asking for for the past 20 years, and here is what we are going to do in order to give it to them”? Is it too much to ask for a commitment to a home run rather than a general statement of “we will start at zero, everything that has been said in the past does not matter and does now count, we will start by asking a few people who can speak ‘what do you want?’, and then we’ll issue a report, and then we’ll appoint an ‘advisory committee’, and then we’ll study their recommendations, and maybe by the end of the next mandate, we’ll have an idea of what we should do, but it will be time for another election so we’ll use it as a ‘vote for us’ slogan and hope that you’ll forget that we just wasted another four years of precious time”, bla, bla…
I noticed that on some Twitter messages some parents are all excited about the one sentence in the NDP platform and suggest they will be voting NDP, etc. While the one sentence is certainly better than nothing, I find myself unable to get overly excited about it and hope that the other mainstream parties will make an effort to top the NDP’s commitment and at least get beyond first base. Do we always have to “start over” again and again? Incidentally, not only CASDA has so far not posted any message about the NDP’s commitment, but neither has Mike Lake…at least, none that I could find. Perhaps they believe that it is unworthy of commentary?
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