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Andrew Kavchak
ParticipantHi Folks,
Conservative leader Scheer seems increasingly confident that he’ll win the most seats in next week’s election. Well, today he got put on the hot seat about autism twice.
First, Ben Mulroney and his co-anchor grilled him about MFAN this morning on CTV’s morning show:
https://twitter.com/YourMorning/status/1184831680315416576
Then Jamie Peddle got to ask him for a commitment at a rally in front of TV cameras!
https://toronto.citynews.ca/<wbr />video/2019/10/17/parents-want-<wbr />national-autism-strategy/
If he did not know what autism was before the election campaign started, he sure does now!
ParticipantHi Folks,
So apparently Trudeau won’t commit to a National Autism Strategy.
https://globalnews.ca/news/6027763/trudeau-ford-autism-strategy/
And Eugene Levy is speaking up (again) with Brenda Deskin.
ParticipantHi Folks,
Some media coverage from CTV…
ParticipantHi Folks,
We are in the middle of a federal election campaign. Two friends and I held a press conference and rally on Parliament Hill today calling for the inclusion of autism treatment in Medicare. The press conference was super, the turnout for the rally was poor.Here is a link to the press conference video:I thank my co-participants who did a superb job. Hopefully there will be some media coverage over the next 36-48 hours.ParticipantHi Folks,
OK, so we’re in the final stretch of this federal election. Where do we stand and how does this compare to what is happening now in the U.S.?
In Canada, we have two federal parties (NDP and Conservatives) who pledge to consult to develop a National Autism Strategy which we may see either at some indeterminate point in the future or in five years (after the next federal election – or more if there are minority governments). Neither the Liberals nor the Greens mention the word “autism” in their platforms, although CASDA appears to insist that the Greens made a commitment.
Isn’t it interesting on that October 1, 2019 two things were reported in the U.S. which really put Canada to shame on the autism file.
First, President Trump signed into law an autism bill that now allocates US$1.8 billion (that’s CDN$2.4 billion) over five years to autism research, early detection and treatment. The Bill is known as the Autism Collaboration, Accountability, Research, Education and Support Act (CARES).
https://abcnews.go.com/Health/trump-signs-18-billion-autism-cares-act/story?id=66002425
Second, the website “disabilityscoop.com”, the self-proclaimed premier source for developmental disability news, reported in an article titled: “Autism Insurance Coverage Now Required in All 50 States” that:
https://www.disabilityscoop.com/2019/10/01/autism-insurance-coverage-now-required-50-states/27223/
“After officials in the last holdout state enacted a new rule, all 50 states and Washington, D.C. have mandates that require some level of insurance coverage for the treatment of autism. The Tennessee Department of Commerce and Insurance now requires all individual, small and large group insurance plans issued in the state to cover treatment for autism that is “medically necessary and appropriate and is not experimental,” including applied behavior analysis, or ABA, at the same level as any other medical condition…”
ParticipantHi Folks,
Well, here it is. The Conservative Party issued a news release about their “National Autism Strategy” (NAS) commitment. It is available here:
https://www.conservative.ca/canadas-conservatives-release-statement-national-autism-strategy/
And Mike Lake with his son issued a video of them together as Mike Lakes reads a variation of it.
Wow. He was first elected in 2006. Thirteen years later….I think this is the first time I have heard him speak about a NAS and make some sort of “commitment”.
So what have we got? First, a recognition of some problems, e.g., that there are a lot of people affected by ASD and “evidence-based therapies and services” cost a lot. OK, so there is no reference specifically to ABA, but the reference to $80,000 is something most parents who are trying to implement ABA programs for their kids can identify with.
It is great to see the words stating that “Canada’s Conservatives believe that the federal government can play an important role in developing a strategy to assist those living with autism and their families” because up to now it has been hard to figure out what, if any, role the Conservatives thought the federal government could play (besides the 2007 creation of an autism webpage, etc.). Certainly with respect to the issue of access to ABA treatment under Medicare Mike Lake made it very clear in his 2007 Media Statement that he did not think the feds had any role to play in that matter.
So what is the commitment? It appears to be to”work with autism stakeholders to develop” a NAS. So it is not a NAS. There is no specific action plan besides consultations. There are no specifics about using the resources or authority of the government to do anything that will directly affect people with autism.
To their credit, they actually mention consulting with other levels of government, including the provinces.
And how much will it cost to develop this strategy? $50 million over five years. $10 million a year.
Realistically, what does that involve? Well, a Branch of either the federal Ministry of Health or the Public Health Agency of Canada (PHAC) may be tasked with setting up a unit to be responsible for developing the NAS over five years. They will be given the corresponding budget. A number of “full-time equivalents” (FTEs) will be assigned to the file (the usual bureaucratic staff complement of a secretary, a team of junior officers, regular officers, senior officers, and at least one executive Director (possibly two) and the part-time attention of at least one Director-General. Thus, the human resource costs alone will be at least $500,000, and quite possibly (much) more. Then there will be expenses relating to all the consultations with all the stakeholders. Significant amounts of travel will probably be involved, not only by the federal bureaucrats but also by the stakeholders (e.g., to attend meetings).
So if I get this correctly, in five years, and after spending $50 million, the government will have a NAS blueprint. The problem is that developing and finalizing a statement about what the government has decided to include in a NAS is quite different from implementing a NAS. And that’s why the news release refers to the announcement itself as “an important first step”.
But first step toward what? Is there any hint that suggests what the final NAS will look like? Well, some initial criteria are suggested: “The National Autism Strategy will be person-centred, include first-person perspectives, will be culturally appropriate, and will reflect the needs of Canada’s northern, rural, and remote communities.” What does that mean? Does “person-centred” mean that there will be easier access to treatment?
To me, it looks like kicking the can down the road. It the next election is in four years, the final outcome of this commitment and the making public of the strategy is going to be after the next election. So in other words, this commitment is a loose strategy to develop a strategy, but that strategy at the end of the day could potentially be nothing more than a tax credit (which could have been announced today).
Is that the best that the Conservatives could do? Somehow, the proposal seems familiar. A few years ago the Conservative government funded a “working group” to develop a business proposal for a “Canadian Autism Partnership”. Their business plan report was given to the Liberal government in 2017. It began with “the people have spoken”. Indeed, the business plan stated that they met with over 100 provincial and territorial government officials from 13 jurisdictions. They held community round tables with over 500 people. And they received survey input from 5,000 Canadians. How much was spent on the consultations? How was that money spent? Regardless, now the new proposal is to spend even more, and to do it all again.
How much repetition of consultation is necessary? We’ve been telling the government what we need since the Auton case started 20 years ago. Is it really too much to expect that after 20 years of communicating our needs and wants to the government that they would indicate what they are concretely prepared to do as part of an action plan?
Just yesterday (Sunday, October 6), the Conservatives issued a news release with promises for the fisheries. The news release contains seven distinct steps set out in bold.
https://www.conservative.ca/canadas-conservatives-announce-plan-to-support-fisheries/
Why is it that when it comes to autism federal politicians won’t get specific?
ParticipantHi Folks,
So we’re in the final stretch and at this point in time it appears that we’ve gotten the signals from three parties and are only waiting to hear from the Conservatives.
However, after the Liberal election platform was released that did not contain the word “autism” in it, it appears that a bunch of autism organizations (e.g. Autism Ontario, Autism Nova Scotia, etc.) quickly put pen to paper and sent a letter dated October 4, 2019, to Trudeau asking him about a National Autism Strategy. However, the wording is interesting. As with the CASDA blueprint for a NAS, it mentions “supports”. The letters contains no reference to access to treatment or Medicare discrimination, etc. Instead, they mention that the provinces are struggling to meet the needs of the autism community across the lifespan and as a result there are inequities and people are moving from one province to another. And their question to the PM is:
“what is your party’s commitment to working with provincial and territorial autism organizations and stakeholders on a National Autism Strategy?”
Why won’t they mention the provincial and territorial governments? What kind of a national strategy for autism can one expect without participation of the provinces? Or do they now consider provinces to be “stakeholders”? My reading of the buzzwords is that “stakeholders” was not written here with the intent of including provincial governments. If the authors meant to include provincial and territorial governments they would have mentioned them separately. This should not come as a surprise since the CASDA blueprint for a NAS documents on the CASDA website specifically say that it is not intended to change provincial government policies.
The kind of NAS that CASDA and these organizations is not the kind that I would prefer to see. I don’t understand why these organizations don’t look at the Liberal government’s record on the creation of their National Dementia Strategy where they passed a law that required the federal Minister of Health to work with his provincial counterparts. Bill C-233 received Royal Assent in June 2017 and includes the following passages:
“The Minister or delegated officials, in cooperation with representatives of the provincial and territorial governments responsible for public health, must develop and implement a comprehensive national strategy to address all aspects of Alzheimer’s disease and other forms of dementia that includes, among other things,…”
“The Minister must, within 180 days after the day on which this Act comes into force, convene a conference with representatives of the provincial and territorial governments responsible for public health, basic and clinical researchers, family caregivers, health care professionals and other care providers, people suffering from dementia as well as representatives from the lay advocacy sector, the Alzheimer Society of Canada, other Alzheimer advocacy groups, and other dementia advocacy groups, for the purpose of developing the national strategy referred to in subsection (1).”
Why do these autism organizations not think that the federal government should adopt a similar collaborative approach that includes the provincial governments?
It will be interesting to see if the Conservatives come out with something meaningful before the election. And after the election it will be interesting to see if the leadership of these autism organizations can assess the past 20 years of failed lobbying and try to figure out some “lessons learned” and disseminate some messages to our community on what works and what does not, and why.
In the meantime, a fellow parent in Toronto and I are are sufficiently fed up with all the beating around the bush and not saying what needs to be said that we are planning to hold a press conference on Parliament Hill on Friday, October 11 at 10:30 a.m. followed by a rally on the Hill at 12 noon. If you know anyone in and around Ottawa who might be able to join us, please tell them about it and ask them to join us at 12 noon!
<u>NATIONAL AUTISM RALLY FOR MEDICARE AND NATIONAL AUTISM STRATEGY</u>
<u>Press Conference:</u>
Where: Parliament Hill, Room 135-b – West Block
When: Friday, October 11, 2019 at 10:30 a.m.
<u>Rally:</u>
When: Friday, October 11, 2019; From 12 noon to 1:30 p.m.
Where: Parliament Hill, Ottawa.
Speakers: Jamie Peddle, Andrew Kavchak and other activists from the autism community.
Members of the autism community will be protesting on Parliament Hill during the Federal election to call on every federal political party to commit to a National Autism Strategy that will have as a core component the taking of steps to ensure that autism treatment is covered by Canada’s public health insurance system (Medicare) in every province and territory.
Although provincial governments across this country have recognized the benefits of autism treatment (Intensive Behaviour Intervention based on principles of Applied Behaviour Analysis) and launched treatment programs, the Ontario Autism Program, and others like it, is administered by the Ministry of Social Services and not Health. This misplacement of autism treatment programs has significant negative consequences and amounts to discrimination in our Medicare system.
Since coming to power in 2015 the Liberal government passed a law requiring the federal Minister of Health to work with her provincial counterparts to develop a National Dementia Strategy. The last budget allocated tens of millions of dollars to this effort. What this demonstrates is that where there is the political will, there is a way.
What we expect from our federal government is to convene a meeting with the provinces, demonstrate some leadership, provide necessary incentives, and negotiate the inclusion of autism treatment under Medicare from coast to coast pursuant to national standards. We are not asking for the moon. We are only asking to be treated as are all other Canadians under Medicare.
ParticipantHi Folks,
So we’re in the middle of a federal election campaign and so far nothing seems to be happening on the autism front.
The NDP issued a platform committing themselves to consultations to develop a National Autism Strategy if elected. The fact that we’ve been lobbying and repeated what we would like for the past 10-15-20 years apparently has not been clear and does not count. Like a game of snakes and ladders, we hit a snake and have to start from square one again.
The Green party’s platform says nothing about autism. They want to do a lot on the healthcare front, including renegotiating Health Accords to include rehabilitation services, which strike me as a model for how to get the similar autism treatment services into Medicare. But no mention of autism.
Regarding the Conservatives, on the Ontario television program “The Agenda” over a month ago Mike Lake appeared on a panel discussing autism and suggested that the Conservatives would have something. However, throughout the show he kept dropping names of experts that he knew and seemed to suggest or imply that a Conservative National Autism Strategy would consist of a promise to do a whole lot of consultation with people Mike Lake knows, etc.
So we’re less than a month away from election day. What is Mike Lake and his party waiting for to declare their autism position? Well, one thought is that they are waiting for the Ontario Ford government to announce their reform plans to the Ontario Autism Program. It appears that the “Advisory Panel” that worked all summer on reviewing the consultation input from the community has made some report to the Minister of Social Services. At least, that’s what I heard. If true, then the government should be in a position to give some direction soon…..or will they wait until after the federal election? Would that delay the federal Conservative Party from issuing any promises until after the election? In other words, no promise from them, period. And if there is no pressure from the Conservatives, then Trudeau probably won’t make any electoral autism promise either.
In light of the fact that so far there is nothing from the Conservatives and no indication of when something (anything!) may even be issued, it really makes me wonder about CASDA’s approach to dealing with some politicians. When you get something, it is nice to thank the person. But does it make sense to thank someone for…nothing? What does it mean when you post a picture on social media of a politician and thank him for “dialogue” (what did he say?) and “leadership” (what did he do?) in the middle of an election? Well, CASDA did just that for Mike Lake on September 26 and he promptly “re-tweeted” it. Does it give the electorate in his riding the impression that the national autism community is grateful to Mike Lake and supports him? Was this a CASDA endorsement of sorts? If he had staged a press conference with Scheer and made an announcement that the lack of Medicare coverage for autism treatment across the country was a problem and they were going to take steps to address it with the same vigour as the Harper government pursued the “national securities regulator” project (despite the fact that the Supreme Court of Canada said “it’s provincial” and a number of provinces did not want it), then I would understand a mid-election show of support. But in the absence of…anything…at least, so far…what is the motivation behind such behaviour? What benefits come to the autism community from that? I don’t get it. I just don’t get it. If the dialogue is so good….why not share transcripts with the community about what was said? Why the secrecy? Why does it seem that so often we have to guess?
ParticipantHi Folks,
Well this is interesting. CASDA just came out with an “election toolkit” that give people ideas on what they can do in this election (e.g., contact political candidates, etc.).
At the end of the toolkit there is this interesting paragraph:
“Sharing your lived experience
We would love to hear about your experience. If you met election candidates face-to-face or had a conversation on the phone, did you feel the candidates listened to your story? Did they ask good questions? What did they say they would do if elected? Did you enjoy speaking with them? If you emailed or sent a letter to one or more of your candidates, did you receive a response? Are you willing to share it with us? To share your experience meeting with candidates, please email …”It seems to me that CASDA has never told the autism community about its meeting and communications with politicians. They always talk about Mike Lake being a big supporter, but I can’t find Mike Lake’s comments on the CASDA NAS “blueprint” anywhere. I was hoping Mike Lake would express his views rather than keep them secret. Obviously CASDA must have shared the blueprint with him and asked for his support. What did he say? As far as I know, CASDA has not made that public. Nor have they made public what anyone else has said during meetings or in response to meetings. The Green Party issued their election platform document yesterday and it contains no mention at all of autism. Would it be correct to assume that CASDA’s lobbying of the Green Party was totally ineffective? What did the Green Party say in response to CASDA’s submission? If CASDA won’t inform the autism community of their exchanges with politicians, then we can only guess.
And if CASDA does not want to share such information with the autism community, why do they want the autism community to share such information with them?
ParticipantHi Folks,
Today the federal Green Party released their election platform.
https://www.greenparty.ca/sites/default/files/platform_2019_en_web_update_09-16.pdf
It is 88 pages long and the word “autism” does not appear once. At least, I can’t find it. I may be wrong (I hope I am), and if I am please let me know.
I remember seeing a video of Elizabeth May standing up in the House of Commons once and wondering why there was no National Autism Strategy? She even posted the video on her website (see link below).
Well now I wonder if she will post a video of her asking herself why her Party is continuing to totally ignore the issue.
The platform addresses many things that are not surprising…most notably, the environment. But there is also a section dealing with healtcare. What do they propose to do? A lot of things, including: expanding the Canada Health Act to create a universal Pharmacare program, restore the previous Health Accords, and “Negotiate the Canada Health Accord to prioritize expansion of mental health and rehabilitation services, reduction in wait times, access to safe abortion services and access to gender-affirming health services such as hormones, blockers, and surgery”.
Wow. That’s interesting. In many ways, autism treatment is similar to rehabilitation. It is not a huge step, and in fact may be a logical progression, to suggest that if people who suffered from a brain injury or something like that and need lots of rehabilitation involving significant repetition of exercises in a progressive order to learn and develop previously lost skills, etc. are entitled to Medicare coverage, and that the federal Green Party wants the federal government to negotiate with the provinces the expansion (on a priority basis!) of such rehabilitation services, that they could and should support doing the same thing for autism treatment.
Anything else? Yes! They want to “reorient Health Canada’s mandate” towards things like mental health and addictions, and address the opioid crisis as a “national health emergency”.
They also propose creating two new strategies in the health realm: a “National Mental Health Strategy” and a “Suicide Prevention Strategy”.
But not strategy for autism. Why?
I suspect the CASDA folks must be really depressed. Their NAS blueprint only called for a few tax credits in the area of “supports”, and the Greens would not even grant them that.
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