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Andrew Kavchak
ParticipantHi Folks,
So Parliament resumed sitting yesterday after a long break and tomorrow there will be another “Autism on the Hill” annual rally on the steps leading to the Centre Block. According to the “Autism on the Hill” website, the speakers will include two college students who are “self-advocates”, and the usual political suspects, including Mike Lake and Senator Jim Munson.
In today’s Ottawa Citizen Senator Munson has an op-ed published about what a “National Autism Strategy” can do.
Munson: Here's what a national autism strategy can do
This is interesting…Senator Munson ends his opinion piece with the statement “Let us all speak in one voice”. Yet, he will be sharing the stage again with Mike Lake who, as far as I know, has never actively lobbied for a “National Autism Strategy” and, as far as I know, has never actually said the words in public (at least not with any clear corresponding expression of support for the concept). The other “self-advocate” speakers may suggest that they support the idea of the creation and adoption of a National Autism Strategy, but I have yet to hear one of these “self-advocates” advocate for the adoption, for those who could benefit from it, of ABA/IBI either as a treatment in the public health insurance system (Medicare) from coast to coast, or as a teaching technique in the education system. I support whichever voice advocates for that….and as far as I can tell, a few voices on the Hill tomorrow probably won’t even mention it. I’m not sure whether I will attend the event. I have in the past a few times and always felt afterwards like someone had let the air out of the balloon.
ParticipantHi Folks,
What do you get in a free and democratic society when you mix a problem (e.g., autism and the need for help) with government indifference (or the usual lip service)? A Human Rights Tribunal complaint!
The Montreal Gazette published an article online today following a press conference by a group of parents. The stories in the article hit home. Many of us have, and continue, to share the same experiences. What is heart-breaking, among many other things, is that the Premier of Quebec is a doctor, the provincial government took a long time to “review” autism programs and services and then to announce what was supposed to be an improvement. Notwithstanding the historic claims of the separatists that everything is fine in Quebec for the autism community (which they made quite clear when voting against initiatives in the House of Commons to establish a National Autism Strategy), what this story demonstrates (yet again) is that the facts and reality are quite different on the ground from the fairy tales that some politicians would have us believe.
Will the federal government’s recent budget announcement of $20 million to create a website and fund anti-stigma autism awareness campaigns provide any relief or reasons for hopeful optimism? How about PHAC’s recent report about the prevalence rates, which obviously suggests that these parents are not alone…will that help move some politicians and bureaucrats to take another look at the situation? How about the recent Autism Canada report about the fate of adults with autism….will that help somehow to open some eyes in provincial capitals and Ottawa about a long-time brewing crisis that is in need of an urgent concerted national effort to finally allocate appropriate resources and provide the programs and services that would befit a free and democratic (and wealthy G7) country?
Over a week ago a tragedy took place in Saskatchewan where a junior hockey team on a bus was involved in a terrible accident. The whole country rallied to express solidarity with the survivors and the families of the victims. The grieving was national in scope, and even had international dimensions. The whole situation was, and is, very sad. But there is some comfort in knowing that the little community of Humboldt is not alone and that the country can sometimes engage in behaviour that makes us all feel like we are on the same team. To me, those parents of children with autism who have struggled to do their best to provide for their children and who have also stepped up to advocate and lobby and pursue legal avenues to better the lives of the members of our community are heroes. Undertaking a court case ain’t easy. There have been many cases over the years in the courts and human rights tribunals across the country. The leader of the pack was the B.C. case of Auton, which went all the way to the Supreme Court of Canada in 2004. The families in that case sacrificed a lot over many years to pursue the case, which could have benefitted everyone from coast to coast. I wish these parents in this new Quebec Human Rights Tribunal case good luck and all the best, as I suspect many, many other parents in the community across the country do too.
Parents to file human rights complaints over lack of autism services
ParticipantHi Folks,
On April 7, 2018, CBC posted (and presumably broadcast) another interesting story about autism with mixed messages. I know how some people in the autism community understand and interpret these types of news stories, but I wonder how the Canadian public (voters) interpret the meaning of these stories.
In this story, it appears that one parent who is also a board member of an autism organization, is advocating for the use of ABA in schools by school boards to help teach kids with autism. Sounds good! I fully concur.
And then there’s a reference to the federal government’s recent budget and the announcement that the feds will spend $20 million. And the article concludes by stating: “With the new funding, PAFN is hoping to expand and open more hubs around the Lower Mainland to create a broader network of support.”
So….are we good? A parent is advocating more ABA, the federal government’s recent budget announced funding, and the autism organization in question will be getting some of the money and plans to “expand” and “open more hubs” and broaden the “network of support”. If I had no experience with autism, I would read the article and think that the feds are doing a good job by addressing the issue. Yet, based on my experience, the story frustrates me because of the mixed messaging and possible misunderstanding.
ABA in schools for kids with autism is one thing, while the federal funding of a website (or the apparent expansion of an information centre network) is another. Yet, these things get muddled together, along with the message that the feds are funding it in the recent budget (presumably because they reasonable politicians reacting to reasonable requests from the autism community) and therefore there is reason to be “hopeful” for a brighter future. However, to address the parent advocate’s issue, it is the school boards that need to hire more staff that are trained in the use of ABA, and the article seems to suggest that the school board is comfortable with their “holistic approach” and has no plan to change. So….will the federal funding, new website, new info centres, etc. help to expand the use of ABA in schools? Perhaps I’m missing something, but I just don’t see the connection. The net result is that here is a media story which, instead of leaving the average reader concerned that there is a problem to address, it leaves them with the suggestion that the feds are taking care of the funding and people on the ground are taking care of business and all is well. At least, that’s my impression. But I will be first to admit that I may be wrong. Maybe the average reader will focus on the beginning and take away the idea that there is a need for ABA in schools for kids with autism. Maybe.
ParticipantHi Folks,
In another very clear example of why the autism community did not need a “Canadian Autism Partnership” bureaucracy project for “issue identification”, the already existing national “Autism Canada” society recently issued a report on autism and aging.
The National Post just posted an article about it…
Individuals with autism need support, resources as they age: report
Those who read the article will recognize many historic themes.
I remember about 12 years ago the Autism Society of Ontario also issued a report about autism and adults, which, among other things, suggested that a disproportionate amount of attention was being taken by parents of youngsters (fighting for access to treatment) and that government resources were diverted to dealing with kids (and if I remember correctly, it insinuated that this was done at the expense of adults). I remember at the time being disappointed that the organization that claimed to be the “voice” of the autism community would issue such a report, and on a local chat board I wondered if we would ever see the Canadian Diabetes Society pit those with “juvenile diabetes” against the rest of their community. We all know that the squeaky wheel gets the grease, but it never occurred to me that the provincial Autism Society would issue a report suggesting that one sector of the community was not being appropriately served because another sector was squeaking too much. I don’t recall the report having any significant impact on any public policy in Ontario (maybe I missed it), but I remember that a few years later the head of the Autism Society of Ontario was awarded an “Order of Canada” by the Governor-General.
So… how helpful will this report be? How will the community use the report in its lobbying? How will governments react? What will the effect be? As with the case with the recent PHAC report on prevalence rates, I’m interested in what time will tell.
ParticipantHi Folks,
Today is “World Autism Awareness Day”.
In the House of Commons, there were a few more statements about autism recently.
On Wednesday, March 28, 2018, there was this:
Autism
Mr. Speaker, April 2, World Autism Awareness Day, will mark 20 years since my son Jaden’s diagnosis.
Helen Keller once said, “Life is a succession of lessons which must be lived to be understood.” These words are very powerful for me. For example, two years ago, Jaden and I had a great day speaking to 15,000 kids at WE Day in Saskatoon. Our flight home was delayed, and suddenly Jaden got really sad. Tears streamed down his cheeks. We found a quiet place at an empty gate, and I just held him, my 20-year-old son, for half an hour, until he felt better.I reflect a lot on what I have learned from Jaden. Though he struggles to articulate why he feels what he feels, he expresses how he feels very openly and clearly without words. For Jaden, much more important than the words I speak is the simple fact that I am there.The life we live is never exactly the life we expected, but the unexpected life is where the real learning takes place.On Thursday, March 29, 2018, there was this:
World Autism Day
Mr. Speaker, on World Autism Day, I would like to pay tribute to the leadership of Wendy and Sergio Cocchia.
When seeking a diagnosis for their son over 20 years ago, Wendy and Sergio came to believe that every individual and family in B.C. affected by autism should have access to state-of-the-art resources for assessment, treatment, education, support, and research for full lifespan needs, from diagnosis to being a senior citizen. Now the Pacific Autism Family Network, and generous partners, have raised over $32 million.Over 60 organizations bring essential resources together in one very special building, and through satellite locations across B.C. This year, an additional $11 million in budget 2018 added the Autism-Intellectual Disability National Resource and Exchange Network.West Vancouverites, like Wendy and Sergio Cocchia, Jean and the late Michael Lewis, and many more, are tireless and give so much.It is with gratitude that we celebrate all the families on World Autism Day.HealthMr. Speaker, on April 2, we will celebrate the 11th annual World Autism Awareness Day.
On this day, Canada will join the international community, hundreds of thousands of families and caregivers, and communities around the world that will wear blue in recognition of people living with autism.Can the Parliamentary Secretary to the Minister of Health please update the House on the government actions to help those affected by the various forms of autism spectrum disorder?Mr. Speaker, I would like to begin by thanking my colleague from Dartmouth—Cole Harbour for his leadership on this file.
Our government is committed to supporting Canadians living with autism spectrum disorder.I would also like to take a moment to acknowledge the compelling advocacy of the member for Edmonton—Wetaskiwin on this important issue as well. That is why, quite frankly, I was disheartened that the Conservatives’ recent motion went against our 2018 investment of $20 million in new funding to support people with autism spectrum disorder and their families.On World Autism Awareness Day 2018, I would encourage all members of this House and all Canadians to learn more about autism and how each of us can work together to make a difference.OK, so what’s the “take-away” from these series of statements and exchanges? Here are just some of observations…First, even though these are Parliamentarians and one of them has a child with autism, not one of them spoke about the needs of the community, public policy gaps, and government efforts to fill the gaps and actually help (apart of course from recognizing the efforts of some parents and the recent budget contribution of $11 million).Second, Mike Lake, as usual, seems to always avoid these public policy issues when he makes is annual “autism awareness” statement and instead mentions his son and his love for his son, which we all get of course. Mike Lake also appears to have brought his son to the House of Commons again, as he often does to such events (e.g., the annual “Autism on the Hill” rallies), which I assume he believes helps to establish or maintain his credibility in the autism community or something. If you watch the video of him delivering his statement, he seems to get the usual standing ovation afterwards, and I still cannot figure out for what.Third, the exchange between Fisher and Blair is your typical political fluff. One asks the government for an update on what the government is doing. As far as I can tell, in the past two weeks the government has not only issued a budget with some autism implications, but also issued a first-ever report on prevalence rates. I have not been able to find one single comment in the Hansard from the opposition parties about these developments. So far, these developments seems to be unworthy of commentary by the Conservatives, etc. And then the Parliamentary Secretary to the Minister of Health replies by first making a reference to the “compelling advocacy” of Mike Lake. What “compelling advocacy”? What is he talking about? Does he mean Lake’s advocacy against Shawn Murphy’s Bill which would have required the Minister of Health to create a National Autism Strategy? Is that the kind of advocacy that he’s cheering on? Or is it the “compelling advocacy” for the creation of the Canadian Autism Partnership (CAP) project? If it was so compelling, why did the Liberals totally ignore and reject it? It is noteworthy that the Liberals did so without ever once actually explaining what they thought was wrong with the CAP project and why it was unworthy of their support (so much for Trudeau’s promise for more “transparency” in government). Honestly, if there is any “compelling advocacy” that actually resulted in any meaningful improvement for Canadians with autism, I would like to know about it.After taking the moment to make the politically correct payment of a strange compliment to a political foe, Blair does not provide the requested update, but instead criticizes the opposition for some sort of motion that “went against” the budget’s announcement of $20 million for autism. I’m not sure what motion he was referring to as I could not find any that mention “autism”, but maybe my search skills are inadequate. Finally, after this meaningless exchange, there is the wonderful closing remark about hoping that everyone can “work together” to make a difference. Ah….we wish.Fourth, I could not find a word about autism in the Senate debates from last week. Parliament is on another break and won’t be getting back to business until April 16. On April 18 there will be another of the annual “Autism on the Hill” rallies, among the guess speakers that are currently listed are two “self-advocates”, including one who is attending college. I don’t know about you, I never heard any of those “self-advocates” say anything at these speaking events that in any way can be said to represent my son or his interests, or, to my knowledge and in my opinion, those of any other low-functioning non-verbal community members on the spectrum. When I hear these “self-advocates” elaborate verbally in the most eloquent manner on their challenges, I often wish that my son could trade his for theirs. I don’t know if I will bother to go to this year’s rally as the previous ones always depressed me. Perhaps it will depend on the weather.ParticipantHi Folks,
Well, this is a historic day in the world of autism in Canada. Back in 2006 (If I remember correctly), it was Health Minister Tony Clement who, after months of saying that “autism is provincial”, suddenly turned around and on the day before our rally on the Hill, he held a press conference and announced a five-point plan (you know, the “we’re going to build a website” type stuff, etc.) which included something along the lines of “exploring the feasibility” of surveillance. Well, here we are, many years later, and the Public Health Agency of Canada (PHAC) just released its first such report. It is available here:
The report will take a while to digest and evaluate. At first glance, it seems to confirm that the prevalence rates in Canada are similar to those in the U.S. The conclusion also states that the surveillance data can inform the development of appropriate government policies and program. However, I don’t see any hint or suggestion that south of the border, where they seem to have considerable more experience with surveillance and more robust programs (at least in multiple states), that we should look south for an indication of what should be the next steps. I guess it will be up to the autism community now to pick up the data and to use it effectively with respect lobbying provincial and federal governments. Perhaps one province spends more on autism “per capita” than other provinces and this data could be used to lobby for a boost to the autism budgets in the provinces at the bottom of the list, etc. Of course, with time, trends will become available too…however, I gather that they have a retrospective section which suggests that there is a clear trend of growing numbers.
Anyway, it will be interesting to see how the community reacts and uses the report, and whether PHAC will promote the report in any way and whether government health, education and social services departments will even notice and say or do anything.
ParticipantHi Folks,
And here is the latest update on the situation in Saskatchewan (with a provincial budget to be tabled)… sad.
Individualized funding for children with autism expected to cost $2.8 million
ParticipantHi Folks,
Over the past little while the media has carried some disturbing stories (familiar to all of us in the autism community) about lack of services and costs beyond the reach of most people. The media carried stories (and I posted some of them on this board) from Quebec (Montreal), Ontario (Ottawa), B.C., Saskatchewan, etc. Now there is another story from PEI about the lack of autism services for adults who are no longer allowed to stay in the school system because of their age.
The media carries these stories and it is not hard to connect the dots…all the stories relate to the challenges of meeting the needs of people with autism at different stages of the life cycle from toddlerhood, childhood, youth, adulthood, etc. and the challenges exist in every province. Is it time for a “National Autism Strategy” for the feds to negotiate a funding arrangement with the provinces for improved services pursuant to some national standards to try to actually make the situation and the lives of Canadians affected by autism better? Or is it time for the federal government to spend millions on a new website and divert the resources of the Public Health Agency of Canada to promote a new anti-stigma autism awareness campaign?
ParticipantHi Folks,
Well, the Ontario “Progressive Conservative” Party (the current opposition party in the Ontario legislature) just elected a new leader last night to lead the party into the June provincial election. Out of four candidates, the party members who voted picked Doug Ford, brother of former Toronto Mayor Rob Ford. You may remember that a couple of years ago Rob Ford was the subject of many news stories that were…embarrassing (such as the pictures that surfaced of him smoking crack-cocaine or something – which he denied of course….). Well, his brother Doug is one of these “populist” types who rails against “the party elites” (even though his father was a provincial MPP and with him being a Toronto City Councilor, the family is hardly “outsiders”, especially when they use their name to brand the “Ford Nation” of supporters across Ontario. The PC Party has a good chance to win the next election, even if it was headed up by a donkey (polls using a fictitious leader name showed the party in the lead) because Ontario is simply fed up with the provincial Liberals. However, I read something in the papers the other day that depressed me. It turns out that Doug Ford once voted on Toronto City Council in favour of the creation of a group home for people with autism….sounds good, right?….but then he retracted his support when he heard that the people with autism will be allowed out of the group home and allowed to walk around the neighbourhood. Apparently he expected them to stay indoors and out of sight. Now he claims that he will “cut waste” (not the waist he carries but government waste), but he has not yet said how he will do that. I’m getting nervous here….
ParticipantHi Folks,
Well, I just had to share this story that I just came across.
The story apparently aired on the local CTV station in the nation’s capital, Ottawa. I always find Ottawa autism stories interesting, not only because I live here, but because I often think it should set an example… unfortunately, too often it is of the wrong kind. The provincial government announced about two years ago a major overhaul of the autism programs. The initial proposed changes were dreadful….reintroducing a formal age cut off and reducing it to age five! Well, fortunately a lot of parents and the “Ontario Autism Coalition” protested and got enough media play that the government revised their proposed changes. Now everyone under 18 is supposed to be eligible for services. I did not believe it when I heard it, and this news story just confirms it. Back in 2004 the Auditor General of Ontario indicated there was a waitlist of over 1,000 kids on the Preschool Autism Program wait lists. And this story makes reference to one family being told they were number 900 something on the current list. So….the government announces hundreds of millions of “new” spending, but nothing seems to shorten the wait list. What is really strange is that there is a wait list for “direct funding”. While one can understand that when the government establishes or expands a program there is a period of time where they don’t have the infrastructure and employees in place to deal with the demand, but when it comes to direct funding, what is this “wait list” all about if the money was identified in the budget? So often it just seems like it is “smoke and mirrors” in one province after another. And “la question du jour”…..how is the new federally-funded website going to help those people on the wait list. The families in the story are spending up to $7,000 a month on therapy for siblings….how is a website going to help them? I recently read that the organization in Montreal that is getting some of that website funding responded to an inquiry from one mother by saying that parents in the autism community wanted the website and asked for it. I wonder….which of the families on that Ontario wait list asked for a website?
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