In 2016, the Liberal Party approved a resolution calling on the government to work with provinces and provide funding for coverage for autism treatment. The Trudeau team has since ignored it.
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Andrew Kavchak
ParticipantHi Folks,
If you were participating in a government consultation exercise regarding autism policies, could you summarize everything you wanted to say in 30 seconds?
One of the key buzzwords in government and bureaucracy policy and decision-making is “consultations” with stakeholders. In theory, it is a process which is supposed to enlighten the government to the needs and wants of the people which should help them make decisions on the allocation of resources in such a way as to reflect the desires of the people and make democracy work. But too often the consultation process is somewhat of a sham and smokescreen for decisions that have already been made. Sometimes the consultations are exhaustive and thorough….but other times they are just “going through the motions”.
The Ontario government apparently engaged in some consultations before making their early February announcement regarding changes to the autism program. The Minister started off her conference call by saying something about “we’ve consulted, we’ve listened, we understand….now here’s what we’re gonna do”. Yet, she experienced so much opposition that they announced they are going back to the consultation process. And now here is the last public report about the consultation process … you got 30 seconds! Next! So, is this really consultation?
ParticipantHi Folks,
Well, there’s no doubt about it, as a result of some government announcements, autism organization activities and community demonstrations the past few months have seen an uptick in the media stories about autism. In some quarters more and more people are expressing themselves in one way or another (e.g., demonstrating with signs, social media, traditional media articles and stories, etc.). Most recently the Ontario government announced a new round of “consultations” to get input from the community so they can “get it right”, and CASDA issued its blueprint for a National Autism Strategy, etc.
However, is there really a “debate” going on? What are the ideas that are being discussed? Which are percolating to the top? Who (either individuals or organizations or politicians, etc.) is/are emerging as leaders in the debate?
From what I’m seeing, there’s not really much of a debate going on. The vast majority of parents in Ontario are upset about the recent announced changes to the Ontario Autism Program and the general message that seems to be emanating from them is that they want more services or funding for services. Regarding CASDA’s blueprint, I don’t see much commentary anywhere. Perhaps I’m missing something. At the April rally on Parliament Hill and on some recent twitter postings there is talk of “momentum”, but let’s be honest….those who have been in the trenches before have seen flurries of activities and announcements which gave the impression of momentum towards something, only to be followed by silence and waiting for nothing. Hopefully, it will be different this time, but what really strikes me is the lack of serious debate and honesty or transparency going on.
Here are some examples. Many politicians have indicated at various times that they support our community. Well, where are the clear statements as to what they are advocating for and supporting? The most glaring example of course is Mike Lake. While CASDA gave him a lifetime membership and considers him an ally in the cause, I can’t find any post on his Twitter feed or transcript of any speech or any letter or document that he has issued where he clearly states where he stands on the issues raised in the CASDA blueprint for a National Autism Strategy. This should not really be surprising however. When the Liberal government announced in February 2018 a $20 budget allocation towards a still non-existent autism website and anti-stigma campaigns, etc. I could not find any comment from Mike Lake. Why is that? If he is a champion for autism advocacy and really believes that public policy can make a difference in the lives of Canadians with autism, would it not be reasonable to expect him to at least comment publicly on these initiatives and indicate whether he does or does not support them and give some reasons? Back in 2007 when he voted against a Bill that would have legislated the requirement for the Minister of Health to create a National Autism Strategy, he issued a statement explaining his rationale (addressing one part of the Bill and ignoring another). That statement was then sent by many MPs to parents like me and posted on number MP websites to convey the message that they could not vote for it and even a parent MP with a child with autism was against it. Well, if Mike Lake now (in 2019) supports a National Autism Strategy and the CASDA blueprint, it would be nice to get a statement from him with as much detail so that we could send it those MPs who may be hesitating. But no. Mike Lake’s previous 2007 statement is now nowhere to be found (except for the FEAT annotated version available at: http://featbc.org/downloads/FEATBC_release_02_26_07.pdf
What conclusion can one come to about the silence? Does a person who appears to refuse and avoid to engage in debate really belong in politics?
On a related note is the organization called “Ontario Autism Coalition” (OAC). While they have been very successful in challenging the Ontario government over the years and clearly can claim credit which they deserve for getting some policies overturned or mitigated, their agitation is sometimes perplexing. For example, Mike Lake wrote a piece that was recently published in the National Post in which he admitted that he was previously influenced by the anti-vaccination hoax movement and more recently came to his senses. The OAC posted a tweet complimenting him for his bravery, openness and clarity on this important matter. Yet, nowhere can I find a post from them asking him to be just as brave, open and clear with respect to what he believes autism public policy should be.
Similarly, as the Ontario government recently started a new round of “consultations”, the OAC head posted on social media that she filled out the online survey and conveyed a few key points which she hoped other parents in the community would repeat (e.g., things like no age or income caps on funding, etc.). Yet, the issue of whether it should be the Ministry of Health that delivers the treatment (as opposed to the Ministry of Social Services) and whether it should be covered by the Ontario Health Insurance Plan (OHIP), i.e., Medicare, was not mentioned at all. Unfortunately, while the OAC deserves credit for its accomplishments and efforts, this clear omission reflects a philosophy that I don’t share.
However, the award for most misleading interventions in public autism-related debate on social media might be most appropriately be given to CASDA. A while ago they were in Ottawa for an annual conference that they organize with their supporters and for their press conference to launch their National Autism Strategy blueprint (a press conference which Mike Lake did not participate in, by the way). At the time, they posted a note about their blueprint on their Facebook page. One lady then posted this comment:
“Sheri Bower Radoux How can a national strategy not include ABA services?!? This is why families in Ontario are in an uproar!”
And how did CASDA reply? “CASDA Sheri Bower Radoux it does- it includes evidenced-based practices and specifically names ABA : )”
The CASDA reply implies that their blueprint for a National Autism Strategy does in fact address the need for ABA treatment. The original poster then replied “Thank you for clarifying!”. Unfortunately, CASDA’s reponse is misleading. Their blueprint document only mentions ABA treatment once in the context of an example of “supports” that parents have difficulty accessing for their kids. The CASDA blueprint’s proposed solution for the problem is more tax credits, training, etc. This hardly addresses the issue of access to ABA treatment in Ontario or anywhere else.
More recently one person named Louis Busch tweeted out an interesting message about the 2016 Liberal Party resolution on autism treatment in Medicare:
“Hey <s>@</s><b>JustinTrudeau</b>, in 2016 the <s>@</s><b>liberal_party</b> promised to make access to evidence-based treatment in autism a national priority. Then 3 years of nothing. Now <s>@</s><b>fordnation</b> destroys autism services & you turn a blind eye? Shame!”
And how does CASDA respond? They tweeted this message:
<s>”@</s><b>JustinTrudeau</b> <s>@</s><b>CQualtro</b> <s>@</s><b>SenatorMunson</b> <s>@</s><b>ASDalliance</b> CASDA has a blueprint for a National Autism Strategy. This isn’t hard and it won’t break the bank. It is the right thing to do. Check it out at http://CASDA.ca Together we can improve the lives of autistic Cndns.”
In other words, CASDA makes it appear (although they don’t directly state) that their blueprint for a National Autism Strategy is an appropriate (“right thing”) solution that addresses the concern raised by Louis Busch. Anyone who reads their blueprint will see that that is clearly not the case since it does not address the issues raised in the resolution (e.g., Medicare coverage for autism treatment and federal funding formula, etc.). The resolution is at the link below….compare it to the blueprint. Miles apart.
How does the public debate benefit from suggestions that a blueprint addresses a problem which it does not? Just wondering….
https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/
ParticipantHi Folks,
Our federal politicians are apparently back in Ottawa today after their Easter break. I hope that first thing in the morning they will read this op-ed in today’s Ottawa Citizen.
<h1 class=”m_-1164899376791761852entry-title”>Kavchak: Federal parties must support autism funding – and mean it</h1>
Updated: April 29, 2019When my son was diagnosed with autism in 2003, the new provincial Liberal government was conducting a review of autism programs. My wife and I placed our son on a waiting list for treatment and hoped for policy improvements that would enable him to access the treatment he desperately needed. Instead, we had to resort to the private sector at tremendous expense for two years before we got some temporary financial assistance. Today, after years of continuous tinkering, another government plagued with waiting lists is struggling to reform the Ontario Autism Program (OAP).
The inadequacy of provincial programs has recently prompted the Canadian Autism Spectrum Disorder Alliance (CASDA) to issue a blueprint for a proposed National Autism Strategy (NAS) that it hopes will be adopted by federal political parties in their election platforms. The blueprint calls on the federal government to act in areas that cover the lifespan, ranging from access to supports to employment and housing, etc.
My son’s name was recently added to the unconscionably long 10-year waiting list for placement in a group home, so housing is an important issue for us. However, the blueprint is a disappointment because it contains a glaring omission. It says nothing about medicare’s absence from the autism treatment file.
The recent protests in Ontario were all about access to treatment. When a child obtains a diagnosis, the first thing parents ask is, “What can be done to help the child develop to their full potential?” Since the 1980s, the medical community has known that Intensive Behaviour Intervention (IBI) treatment, based on the principles of Applied Behaviour Analysis (ABA), may help almost half of kids with autism develop to the point of entering the school system and functioning at the average level. The others typically experience various degrees of progress in their development. Investments in treatment for children with autism will ensure a reduction in support-related expenses throughout the rest of their life.
Yet, instead of being offered by the Ministry of Health and covered by OHIP (medicare), the OAP is offered by the Ministry of Social Services, the same department that administers welfare. Does the Ministry of Health administer any programs that more appropriately belong to other ministries? One discriminatory consequence of this failed game of musical chairs is that Canada Health Transfer and “Health Accord” payments don’t find their way into autism treatment programs.While CASDA wants the federal government to get involved in the autism file, its blueprint does not address this problem. Instead, it refers to challenges in accessing “the right supports” and proposes expanding tax credits and more training. CASDA’s blueprint documents even state that it is not seeking to change provincial policies.At a policy convention in 2016, the Liberal Party of Canada approved a resolution calling on the federal government to work with the provinces and provide funding to ensure medicare coverage for autism treatment. The Trudeau government has ignored it. This contrasts with what it has been done elsewhere.
In 2017 it passed a law requiring the federal minister of Health to cooperate with his provincial counterparts and develop and implement a national strategy to address all aspect of Alzheimer’s disease. That strategy is to include guidelines for treatment and standards of care that are evidence-based etc. Even though the strategy has not yet been released, the recent budget allocated $50 million to it. The same budget announced that the government is establishing a number of “foundational elements” of a national pharmacare program, including the development of a national strategy for high cost drugs for rare diseases “to help Canadians gain better access to the effective treatments they need.” Clearly, where there is a federal will, there is a way.
A central component of any National Autism Strategy should include a commitment to: 1) provide the provinces with incentives to ensure that autism treatment is provided by Ministries of Health and covered by medicare; and 2) negotiate future Health Accords that include funding for treatment.
If a party incorporates this commitment into its election platform, it will get my vote.
Andrew Kavchak lives in Ottawa.
ParticipantHi Folks,
Further to my most recent post, I heard an interview on the radio yesterday with the CEO of the Children’s Hospital of Eastern Ontario (CHEO) who spoke about the latest developments in the Ontario Autism Program (OAP) and CHEO’s newly-announced fees for ABA treatment for autism. At one point he was asked “What do you say to parents who can’t afford it?” and he began his reply by saying that in his preferred scenario, the treatment would be covered by Medicare! He then went on to say the fees are based on “cost recovery” and they don’t make any profit off it, but then he mentioned that they have to “rent space”. Hmmm…Over $150,000 a year? No profit? Perhaps the expenses are a little excessive. The treatment does not have to be performed in a “Class AAA” facility. I would have certainly been happy if my son could access their treatment program in a portable “ATCO” construction trailer or something at a much more reasonable cost. He then suggested that parents should take advantage of the Minister’s announced new round of “consultations”. When asked about whether something could be done to reduce costs, he replied that these fees were in place for the spring and summer, and he expected the government to make some more decisions and announcements before September about future reforms to the OAP. In the meantime, he suggested that there was too much uncertainly to consider things like “cost cutting”, etc. In other words, one government agency is waiting for another government agency to do something before it does something, etc. Isn’t that inspiring?
Meanwhile, the media reported this year that the CEO’s salary was $330,000. Normally one would expect that efforts at cost cutting without compromising standards of care would be rewarded with a bonus (and thus “incentivize” the CEO). Unfortunately, it appears that delaying any initiatives at possible cost-cutting seems to be “the prudent way forward”.
On a separate note, remember how back in February 2018 the federal government announced $10 million over five years to fund the creation of an autism website? Well, it is over a year later. Where is the website? I made some inquiries and got some feedback. It appears that the government funding did not start to materialize until February of this year. From what I understand, it will still be months before anything is launched in cyberspace. I wish the contracted parties would issue a public status update on the project. It has been over a year and the funding was supposed to last for five.
ParticipantHi Folks,
Something significant happened here in Ottawa that has to do with the provision of autism treatment services. The situation is somewhat convoluted, but can be untangled with a little effort.
The Ontario Autism Program (OAP) which provides the ABA treatment program in Ontario has been administered since its launch in 2000 by the Ministry of Community and Social Services (not the Ministry of Health).
However, the Ministry of Community and Social Services has historically delivered the program by contracting out the provisions of services to a number of “regional service providers”. In Eastern Ontario, that happened to be the Children’s Hospital of Eastern Ontario (CHEO). This is a really important issue to consider and understand. Many parents who don’t quite understand and “get it”, are often under the impression that the services their child has been getting was from the hospital, i.e., administered by the Ministry of Health, and since they were not paying for it, they often were under the impression it was covered by Medicare (in Ontario it is called “OHIP” – Ontario Health Insurance Plan).
On a related note, many advocates for the Medicare system as it currently stands occasionally told me (and argued) that since ABA treatment was not a typical medical service provided by a doctor in his or her office or by a hospital (i.e., if it is not a pill or surgery, etc.) then it is not a service that should automatically be covered by Medicare. This argument was seen as a justification for the current discriminatory system. Well, of course, the fact that the Ministry of Community and Social Services contracted the service delivery out to a hospital demonstrates that the argument is a false one.
As you may recall, in early February the new conservative provincial government in Ontario announced some major changes to the OAP in Ontario. And lo and behold, the CHEO announced that they will be providing ABA treatment services to parents who pay the hospital directly. And today they apparently issued their “price list”. And the CEO of the hospital said something that may strike the public as unusual,….the hospital is more used to people providing their OHIP cards to acquire services, and not credit or debit cards to pay for them. Of course, all of us in the autism community who have been forced to resort to the private sector because the public one was non-existent or non-responsive (due to waiting lists or whatever…) have been paying with credit cards and are VERY familiar with the experience and frustrated at the hospital’s unwillingness to deliver the service upon the presentation of an OHIP card.
Will this headline get some people thinking and wondering where this system is reasonable? How many other people with diseases and illnesses that need treatment are served by the hospital upon the presentation only of a credit card? Evidently, judging by the CEO’s reaction, none. So why the discrimination against autism? Will anyone ask this question? Will anyone answer it? Will anyone care?
In case you’re wondering, the CHEO fee is: “$3,360 for 40 hours of intensive applied behavioural analysis therapy”. So supposing you want to provide your child with a program that is 40 hours a week for 45 weeks of the year (taking about seven weeks off a year for vacations, etc.). $3,360 times 45 is…$151,200!!!
ParticipantHi Folks,
Yesterday (April 17, 2019) the provincial government of Newfoundland and Labrador issued a new “Autism Action Plan”.
The press release summarizing the key elements is here:
https://www.releases.gov.nl.ca/releases/2019/health/0417n01.aspx
The action plan itself is here:
https://www.health.gov.nl.ca/health/publications/pdf/autism_action_plan_2019-22.pdf
While the action plan is obviously worthy of study and analysis to determine its strengths and weaknesses, etc. one of the fascinating things here is the issue of timing. Not only did the government issue this action plan yesterday, but it also “dropped the writ” and called for a provincial election scheduled for May 16.
https://www.releases.gov.nl.ca/releases/2019/elections/0417n11.aspx
A couple of questions come up because of the timing issue. It should not be surprising that parents in Newfoundland and Labrador will wonder whether this “action plan” will become an election issue and whether the other parties will make any statements as to whether (if they win) they would implement it “as is” or make any changes? What if the current governing party is not re-elected – will the action plan be changed resulting in an eruption of parent demonstrations (as was the case recently in Ontario)?
However, one of the other interesting issues this reveals is that a party and government can work on the development of an autism plan right up to the day that the Parliamentary session ends and an election is called.
Hmmm….at a the federal level we know that the Liberal Party of Canada (LPC) held a policy convention in 2016 and adopted a resolution calling on the federal government to work with the provinces to ensure that autism treatment is covered by Medicare. The LPC eventually created a working group to draft a report which was given to their caucus liaison person, who then attempted to speak to the Minister of Health about it, etc. So far, as far as I can tell, absolutely nothing has happened regarding the implementation of the resolution. However, at this stage, is it reasonable for MPs to suggest that they are “pre-election mode” and this makes it impossible for them to pay any more attention to this matter? Obviously not.
We are now in mid-April and we know there will be a federal election in October. Although politicians will typically now focus on their re-election campaigns and accordingly prioritize their attention to projects, there is nothing that prevents them, if they really wanted, from working on the development of an “autism action plan” which could be announced and publicly released on the last day before Parliament rises for the summer holiday (currently scheduled for June 21) or at any time before the election in October.
Way to go Newfoundland and Labrador for showing us that work on the development of autism programs does not have to stop just because there is an election on the horizon! I hope the federal parties and every MP who is looking for an excuse to shirk their responsibilities and duties take note.
ParticipantHi Folks,
It looks like a petition for autism treatment is getting some media traction!
<h1 class=”story-h gn-speakable-title”>Ottawa father’s petition to add autism therapy to Canada Health Act draws nationwide support</h1>
https://globalnews.ca/news/5169467/ottawa-father-autism-therapies/ParticipantHi Folks,
As we all know, these past two months have been quite noisy in the world of autism agitation and propaganda. As I scan the regular media and social media sites to see what is happening and who is saying what, I have mixed feelings not only because of what is said, but also what is not said. One of the areas that readers of this board know is a mystery to me is how Mike Lake’s annual autism statements in the House of Commons every April can be so completely devoid of any mention of public policy, and how his annual homage to his son results in so many posts from people thanking him for making them cry and referring to him as a “tireless advocate for a National Autism Strategy”, etc.
Well, someone recently posted a short and simple message that got my attention and which I hope will not be a “one-off” but the sign that the tables are turning. Imagine this…the “Autism on the Hill” organization posted on their Facebook page a post about Mike Lake’s most recent statement in the House which he capped off by blowing a kiss to his son in the public gallery. The message stated that the organizers were “privileged” to be in the gallery to hear and witness the show and they encouraged people to listen and watch the video that they uploaded.
https://www.facebook.com/AutismOnTheHillCanada
There is just one comment after the post. It is from a lady named Bernadette Haaima who stole my heart!
“Bernadette Haaima id rather hear you support parents who’s worlds are turned upside down with his parties cuts to autism and special ed. then i would listen.”
Well said Bernadette!
ParticipantHi Folks,
It seems that the Senate website has a page where Senators can post statements. Senator Jim Munson just posted something on autism.
https://sencanada.ca/en/sencaplus/opinion/perspectives-april-2-4-2019/
<h4>“Senate Liberals</h4>
Last week, I was privileged to stand in the Senate to recognize World Autism Awareness Day on April 2.Twelve years ago, the Senate Committee on Social Affairs, Science and Technologyreleased the report Pay Now or Pay Later: Autism Families in Crisis. And yet, more than a decade later, access and services for autism are still uneven across this country.
This is not who we are as a nation. Why are we struggling to define policies and provide services in an equitable way to all Canadians with autism spectrum disorder (ASD)? Why can’t we guarantee for most people with ASD a future lived to their true potential? I offer that it’s because our leaders don’t know how to listen, because our leaders don’t look at what others are doing, because our leaders don’t know what robust consultation looks like and because our leaders are uncomfortable working together in a nonpartisan way.
This is an unacceptable approach by our policy-makers. Provinces and territories need clear direction.
They need a blueprint, and they need a collaborative and leadership approach with the federal government. We have to sit down together and think outside the box to create a National Autism Strategy. I will never lose my voice for the families dealing with autism, but I’m tired of standing up each and every day talking about the very real challenges faced by families.
It’s my sincere hope that stakeholders can come together and join the conversation because the time is now.”
It is interesting to read how others who speak up about autism in public describe the problems and the issues. Of course publicity and beating the drums has its benefits, but I’m surprised at how rarely in these statements are there direct messages about the need for autism treatment to be covered by Medicare.
From my perspective the Senator is the usual diplomat, but in the process I believe he errs in attributing the problem of the lack of government responsiveness to politicians not listening, not looking at what others are doing, not consulting and not working together, etc. I think it would be much more accurate to simply say the truth: when politicians are in opposition they come to our rallies, but when they are on the government side they don’t care. It’s that simple. Politicians listen, look, consult and work for things they care about, especially when they believe that it is in their interests. So far, regrettably, no federal government has cared. Although thinking “outside the box” is a nice expression that can inspire imagination, creativity, and innovation, I think the problem is that federal politicians have considered autism to be outside the box already for way too long and getting “inside the box” is the challenge. When will the autism be invited to play in the Medicare sandbox? Huh? Sorry, but have we not had enough awareness and conversations with stakeholders? If it is not the time now for the federal government to finally take action, when will it be? What is it waiting for? More stakeholder conversations? Medicare for Autism Now.
ParticipantHi Folks,
A petition was tabled in the House of Commons yesterday (Wed. April 10, 2019) containing a reference to autism.
“Persons with Disabilities
<b>Mr. Peter Schiefke (Vaudreuil—Soulanges, Lib.): </b>
Mr. Speaker, I have the honour to present, in both official languages, petition E-1925, which was initiated by Wendy Atto Doran, from Île-Perrot. This petition recognizes that there are tens of thousands of older Canadians currently caring for adult children with severe autism or other physical or mental disabilities. That is why this petition calls upon our government to work with parents and caregivers to provide them with funding opportunities for affordable group homes and residences that can provide appropriate and continued care to aging Canadians coping with severe autism and/or other physical and mental disabilities.”
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