[Andrew Kavchak]

Hi Folks,

Well, the federal election has been called and it will be interesting to see if the either the Conservatives or Liberals (or both) issue any campaign promises regarding autism.

CASDA issued a “FAQ” document regarding their NAS “blueprint”. The document is dated September 10, 2019. It contains some interesting questions and answers, including this passage:

https://www.casda.ca/wp-content/uploads/2019/09/FAQ-Blueprint-2019.09.10.pdf

“Does the Blueprint recommend changes to the Canada Health Act?

CASDA recognizes that too many healthcare needs for people with ASD are not covered by
provincial health systems. This is unacceptable and CASDA will continue to support partner
organizations in advocating for expanded provincial healthcare coverage for people with ASD.
Because the Canada Health Act is a broad piece of legislation that does not deal with the needs
of specific conditions such as ASD, the Blueprint does not focus on the Canada Health Act as a
pathway to achieve this change.”

This is an interesting way of presenting a problem and dismissing it.  When it comes to Medicare coverage for ABA autism treatment, the blueprint is silent. The word “Medicare” does not even come up. Here, the question is raised in an indirect manner, without really identifying the issue that is a problem or the alternative means by which it could be resolved. Instead, one avenue for resolution is identified, without making it clear what this proposed solution is supposed to address.

While the issue of the lack of Medicare coverage for ABA autism treatment was not even addressed in the “blueprint”, now the response suggests that the issue is not even worth identifying in isolation because “…too many healthcare needs for people with ASD are not covered by provincial health systems…”  Really? And what would those other unmet “healthcare needs” be?

This type of answer brings back memories of a debate I had with the CASDA leadership in the media after their autism project proposal was made public.  While I focused on the question of public health insurance coverage for ABA autism treatment (which has struck me as a key priority issue since my son was diagnosed 16 years ago), the response from CASDA made reference to a list of other outstanding issues that apparently were of equal priority to them, including as dental care, community safety, etc.  Why does CASDA have such a hard time with the “Medicare for Autism Now” issue that they are not even able to identify it and feel repeatedly compelled to swamp and marginalize it?

[Andrew Kavchak]

Hi Folks,

This afternoon a parent of child with autism in Ottawa forwarded to me an email that they just received from the Children’s Hospital of Eastern Ontario (CHEO).  You have to read it to believe it. I forwarded it to a number of autism advocates with the message below…

 
<p style=”font-weight: 400;”>Dear Friend in the Autism Community and those who “Care about Medicare”!</p>
<p style=”font-weight: 400;”>Please see below an email that was sent out by the Children’s Hospital of Eastern Ontario (CHEO) to parents who have kids with autism.</p>
<p style=”font-weight: 400;”>This email provides a link to autism treatment services provided by a hospital, with a price list.  This is not how Medicare is supposed to work.  We should be able to use our “Health Cards” and not credit cards to access medically-necessary autism treatment.</p>
<p style=”font-weight: 400;”>But in Ontario, and many other provinces, this is the norm and no one in the autism community’s leadership seems to notice or speak about it or even think it is an issue.</p>
<p style=”font-weight: 400;”>Can you imagine parents of any other illness, disorder, disease, condition, or syndrome getting an email like this and saying “This is OK and fine with me and the whole community?”</p>
<p style=”font-weight: 400;”>Notice that it is not the Department of Health that administers the Ontario Autism Program but the Ministry of Social Services, which the CHEO message refers to as “the government”.  The Ministry of Social Services contracts out the provision of the treatment services to regional service providers. In Eastern Ontario, it is CHEO who provides the ABA autism treatment. Yet, just two weeks ago, the federal Minister of Health tabled a federal government response to a petition calling for the inclusion of autism treatment in Medicare by stating that Medicare only applies to medical services provided by hospitals and doctors.  She claimed autism treatment is provided by neither.  What a falsehood!  If the Minister wanted to check the truth and facts in the real world, she should take her chauffeur-driven limousine for a 15 minute ride to CHEO and see for herself how what she said is not true.</p>
<p style=”font-weight: 400;”>Notice that the messages says that “<u>In all other parts of CHEO today, we deliver services based on clinical need and greatest urgency but this is not how the government has set-up the Ontario Autism Program now or in the past.”</u></p>
<p style=”font-weight: 400;”>Why is it that CASDA and other autism organizations, most notably the “Autism Societies”, and people described as “tireless autism advocates” like Mike Lake, don’t talk about this issue of the lack of Medicare coverage for ABA autism treatment? Why is it that the CASDA National Autism Strategy “blueprint” does not say a word about the lack of Medicare coverage for autism treatment? Instead, their blueprints proposes expanded tax credits.</p>
<p style=”font-weight: 400;”>Fixing this grotesque example of discrimination in Medicare must be a core pillar and foundation of any National Autism Strategy that any party proposes during this election.  The NDP completely missed the mark in their election platform as the section on “Medicare” completely omits any reference to autism (the disability section refers to consultations for an autism strategy).  What will the Liberals and the Conservatives propose, if anything?  Any bets?  More consultations?</p>
After its election in 2015 the Liberal government passed a Bill requiring the federal Minister of Health to work with her provincial counterparts to develop a National Dementia Strategy that would help improve the lives of Canadians with dementia.  In the last federal budget the government allocated tens of millions of dollars to implement the still non-existent strategy.  What this demonstrates is that where there is the political will, there is a way.  Where is the political will to help Canadians with autism?

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.
<p style=”font-weight: 400;”>Is this situation acceptable?  Not to me it isn’t.  If you share my sentiments on this matter, please join me and my friends on Parliament Hill during the election campaign for a “Medicare for Autism Now!” rally.  Details about the time and date to follow.  Stay tuned.</p>
 
<p style=”font-weight: 400;”>Begin forwarded message:</p>

———- Forwarded message ———
From: <strong class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564gmail_sendername”>Autismemail <autismemail@cheo.on.ca>
Date: Wed, Sep 11, 2019 at 4:14 PM
Subject: ::: CHEO Autism Program fall service offerings/ Offres de services d’automne du programme d’autisme du CHEO
To: Autismemail <autismemail@cheo.on.ca>

Dear families,

<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>The government will launch its new Ontario Autism Program by April 2020.<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>Until then, there are two streams of service under the current Ontario Autism Program. If you are currently in-service with us under the 2018-19 program, the government has decided that your plans will be extended. Please contact us to learn more.<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>For those who were still on the Ontario Autism Program waitlist as of April 1, 2019, the Ministry of Children, Community and Social Services has also started to issue cheques (known as Childhood Budgets).<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>CHEO does not manage the autism waitlist, the government does. We also don’t manage the Childhood Budgets; the government decides who comes off the waitlist and who gets a cheque.<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>You can choose to buy autism fall services packages from CHEO when you receive your Childhood Budget. If you have questions about this, please call us.</p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>Our team of autism experts listened to families to develop these fall services packages. We’ve incorporated feedback from families currently in-service and from those who attended our family night events.<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>One thing we know for sure is that families want high-quality, effective services. By bundling different types of services together, CHEO is able to lower the costs to families in order to maximize Childhood Budgets.<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>In all other parts of CHEO today, we deliver services based on clinical need and greatest urgency but this is not how the government has set-up the Ontario Autism Program now or in the past. We are still learning how to operate in a fee-for-service system and we are doing our best to minimize negative impacts on families. We know this is a difficult time for many of you.<u></u><u></u></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>Once the government decides how the Ontario Autism Program will operate after April 1, 2020, we will determine what services we can offer long-term.  We remain committed to involving families and the community at-large in that decision once we learn more about the government’s new plan. <u></u><u></u></p>

<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”>Please contact us if you have questions at all. We know this is a stressful time for families and we are here to help you.

– <i>CHEO Autism Program<u></u><u></u></i></p>
<p class=”m_-3900821711588292597m_-2920705322902432123m_-7412787321872654548m_1948377358825677682m_-7677557056283150981yiv5766830564MsoNormal”><u></u> </p>

 

[Andrew Kavchak]

Hi Folks,

Well, it appears that yesterday the Canadian Human Rights Tribunal issued a decision stating that 54,000 Aboriginal children could be eligible for compensation because “…the federal government willfully and recklessly discriminated against Indigenous children living on reserve by failing to provide funding for child and family services.”

https://www.theglobeandmail.com/politics/article-canadian-human-rights-tribunal-orders-ottawa-to-compensate-first/

The article states: “Canada must provide compensation of up to $40,000 to First Nations children who were unnecessarily taken into care on or after Jan. 1, 2006, the tribunal said, adding its orders also cover parents or grandparents and children denied essential services.”

The news reports on the radio that I’ve heard include interviews with people involved in the case that suggest that the federal government was pretty mean. They knew they were discriminating and they kept doing it.  So now Canadian taxpayers are on the hook, again, for some astronomical sum.  Hopefully that will help resolve the issue and promote reconciliation, etc.

However, this really sounds like a template precedent.  Does the provincial government (and the federal one) not owe any corresponding duty of care to provide basic core medically necessary healthcare services to all Canadian children under Medicare?  If a class of these children are left out, are they, and their parents and grandparents not entitled to compensation?  Is the autism community not such a class or group of Canadians who have been discriminated against under Medicare?

Getting back to the actual case though, if the PM is going to issue an apology, what I would like to know is whether every federal Minister of Aboriginal Affairs since 2006 and their Deputy Ministers will also issue some sort of explanation and apology not only to the Aboriginal victims of their discriminatory actions, but to all Canadians for their mishandling of their portfolios and putting us in more debt as a result of their actions?

 

 

 

[Andrew Kavchak]

Here is a website with a petition campaign that seems relevant!

https://itsmedicallynecessary.ca/

[Andrew Kavchak]

Hi Folks,

Well, after reflecting on the Minister of Health’s false and misleading propaganda of yesterday I decided to write to her, the PM and a few other notables in an effort to get her and her staff to realize that we’re not fooled.  I hope the media catches on to this.  But for that to happen the autism community around here will need to speak up about this.

Date: 2019-08-21 10:55 PM

To: Info@hc-sc.gc.ca, medicare_hc@hc-sc.gc.ca, hcminister.ministresc@canada.<wbr />ca, Ginette.PetitpasTaylor@parl.<wbr />gc.ca, Pam.Damoff@parl.gc.ca, simon.kennedy@canada.ca, simon.kennedy@hc-sc.gc.ca

Cc: “Munson, Jim” <jim.munson@sen.parl.gc.ca>, WandaThomas.Bernard@sen.parl.<wbr />gc.ca, Leo.Housakos@sen.parl.gc.ca, justin.trudeau@parl.gc.ca

Subject: Autism and the False Response to a Petition

Dear Federal Minister of Health,

I am writing to you as a parent of a child with autism who is concerned about the incorrect statements of yours in response to a petition that was posted on the Parliament website today.  In your response you provide an outline of your reasoning as to why autism treatment (Applied Behaviour Analysis or “ABA”) is not covered by Medicare and could not be in the future.  Unfortunately, the facts that you state are incorrect.  Regrettably, your argument is invalid. You state that ABA treatment is not offered by hospitals or physicians. In fact, the Children’s Hospital of Eastern Ontario (CHEO), which is just a 15 minute car ride from your offices, has been delivering the treatment for the past twenty years.  Unfortunately, they do not do so pursuant any administration by the Ministry of Health and paid for by Medicare, but as a “regional service provider” on contract to the Ministry of Community and Social Services. As such, there is a deceptive game of “musical ministries” which is designed to ensure that Canadians with autism cannot obtain treatment with their health cards. The autism community urges you to revisit this matter and become a champion for Medicare and the treatment of autism.

The petition in question was tabled on May 17 and your response was tabled today (August 21) at the following site:

https://petitions.ourcommons.<wbr />ca/en/Petition/Details?<wbr />Petition=e-2138

The part that you wrote which I consider most regrettable comes at the end of your response:

“The Canada Health Act (CHA) requires that medically necessary hospital and physician services be covered by provincial and territorial health care insurance plans. The Act does not specify diseases or conditions. Any service provided by a physician or in a hospital that is considered to be medically necessary in the treatment of a disease or condition should be covered by the provincial and territorial health care insurance plans. Other health care services provided outside hospitals and by non-physicians, such as Applied Behaviour Analysis and supports for individuals with ASD, are outside the scope of the CHA. For these services, it is up to the provincial and territorial governments to determine whether to cover them, and if so, how, either under their health care plans or under separately funded programs. The federal government continues to support this approach, which is respectful of provincial and territorial jurisdiction in health. There are no plans to amend the CHA to include treatment of specific diseases or conditions.”

Your statement that ABA is provided “outside hospitals” is simply not true.  The facts that you base your argument on are not correct.  Why do you insist on continuing to ignore reality and truth and propagate this myth that has been used as an excuse for two decades to deny families like mine the right to obtain medically necessary healthcare services for my autistic son under Medicare (OHIP in Ontario)?

The Ontario government inherited a terrible Ontario Autism Program from the previous government with unconscionably long waiting lists.  It promptly proceeded to change the program in a way that has been largely perceived as making it worse.  As a result parents and families in Ontario have been forced into unprecedented protests and advocacy, pleading for the government to be more responsible.  However, the fundamental problem at the core of all these “access to treatment” disastrous situations is that in practically all of the provinces ABA treatment for autism is not covered by Medicare.

The medical and scientific community have known since the 1980s that ABA is the only evidence-based treatment for autism, and as such, constitutes the core healthcare need of any child diagnosed with autism (until a better treatment or a cure is discovered).  Yet, most provinces, like Ontario, have their autism treatment programs delivered by ministries of “social services” which have neither the expertise nor the resources” to do a proper job.  In Ontario, every time there is a new Minister and new Government, they constantly tinker with the programs, either cutting budgets or introducing age cut-offs, etc.  There is no stability or consistency in the programs and they don’t benefit from the federal Canada Health Transfer or any payments from the federal government under any “Health Accords”.

The recent Ontario government changes to the funding model involved transferring funds from the regional service providers to the families so they could pay directly in the private sector market. As a result, CHEO actually posted their fees that they now charge parents for their services.  They cumulatively work out to over $150,000 a year!!!  Please see the media articles about it at the following links.

https://ottawacitizen.com/<wbr />news/local-news/cheo-issues-<wbr />list-of-fees-for-autism-<wbr />services-we-are-used-to-<wbr />people-handing-us-an-ohip-<wbr />card-not-a-bank-card

https://www.cbc.ca/news/<wbr />canada/ottawa/autism-cheo-<wbr />information-session-1.5121100

https://ottawa.ctvnews.ca/<wbr />cheo-to-start-a-fee-for-<wbr />service-for-autism-therapy-1.<wbr />4395435

https://ottawacitizen.com/<wbr />news/local-news/cheo-workers-<wbr />rally-on-preston-street-for-<wbr />autism-care.

Please also note that autism has been a disorder recognized for many years is the diagnostic manual of the American Psychiatric Association. The DSM manual is the bible for the medical community.  Doctors routinely prescribe psychological services as part of the treatment of the various disorders.  Why should prescriptions for ABA treatment for autism not be covered by Medicare? Why should certified behaviour analysts not be recognized as professionals within the healthcare system?

This lack of Medicare coverage is a real serious issue for our community. Please do not look for excuses and reasons to perpetuate this discrimination in Canada’s healthcare system.  While the petition called for the amendment of the CHA, there are other ways to rectify this situation without resorting to legislative amendments.  What we need is a Minister with the vision and energy and determination that Minister Monique Begin displayed in the 1980s when she plugged the holes in Medicare and put it on a stronger foundation by passing the CHA.  What we would like you to do is the same thing that you did in the development of your National Dementia Strategy, and it does not require a Bill.  Would you please consider calling a meeting with your provincial counterparts, and negotiate, using all the incentives that the federal government has (and you have many, most notably the giving or withholding of tax dollars), the inclusion of ABA autism treatment under Medicare coverage pursuant to national service standards. Our community needs autism treatment to be itself treated with the appropriate respect, professionalism and stability that the Department of Health, healthcare bureaucrats and Medicare can provide, rather than the constant upheavals we’ve been subjected to over the years by the ministry of social services in Ontario where it is treated like a ping pong ball.

Many people in our community are struggling in unimaginable ways on a daily basis and the provincial governments are letting us down across the board in all the lifespan issues.  My own son is severely autistic and non-verbal.  He will need care 24/7 for the rest of his life.  He recently turned 18 and we placed him on a waiting list for placement in a group home here in Ottawa.  We were told that the average waiting time in this capital city is 10 years!  Many people are calling for the federal government to develop a National Autism Strategy.  I support this. However, the core and principal component of such a strategy must be the undertaking to get Medicare coverage for ABA autism treatment.   Anything else will simply be perpetuating a catastrophic situation which is simply unconscionable discrimination.  Please help our community.

I have written a number of op-eds and letters about the need to end the discrimination against autism in Medicare.

https://ottawacitizen.com/<wbr />opinion/columnists/kavchak-<wbr />federal-parties-must-support-<wbr />autism-funding-and-mean-it

https://ottawacitizen.com/<wbr />opinion/letters/todays-<wbr />letters-how-to-help-autistic-<wbr />children-in-ontario

https://www.huffingtonpost.ca/<wbr />andrew-kavchak/federal-<wbr />leadership-autism_b_14105808.<wbr />html

Our community will be having a rally on Parliament Hill on September 21 at 11:30am to call for Medicare coverage for autism treatment.  You and your cabinet and caucus colleagues are most welcome to come and join us!  The media is expected too.

https://www.facebook.com/<wbr />events/ottawa-parliment-hill/<wbr />national-autism-rally-for-<wbr />medicare/428147901123025/

We hope that during the election campaign you will make a commitment to taking a leadership role in the struggle to get Medicare coverage for autism treatment.  If you do, you’ll get many votes from our community.

Sincerely,

Andrew Kavchak

Ottawa

[Andrew Kavchak]

Hi Folks,

Today we got a pretty good indication from the federal Liberals about why they don’t support Medicare coverage for ABA autism treatment and why we should not expect anything serious from them in any upcoming election campaign promises.

Below is a copy of a petition that was tabled on May 17, 2019.  Today, August 21, the government “tabled” their official written responses.  There are three, from three separate Ministers.  I have copied the petition and the three responses below.  They are from:

https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-2138

The most important section is at the very end from the Minister of Health where she indicates that the Canada Health Act (Medicare) is supposed to cover medically necessary services provided by hospitals and doctors.  She then says that ABA is provided outside of hospitals by non-physicians and is therefore outside the scope of the CHA (and Medicare).

Well, well,…the technical argument.  Perhaps it would be a valid argument if it was based on truthful facts….but it is not.

In Ontario the Ontario Autism Program which administers the ABA treatment program for kids is delivered by the Ministry of Community and Social Services through “regional providers”.  In Eastern Ontario, the regional providers of this ABA treatment for autism service is the “Children’s Hospital of Eastern Ontario” (CHEO).  Thus, her description of the fact is not just misleading, it is simply incorrect.  If the criteria of whether something should be covered is limited to services provided by a hospital or doctor, then coverage should have started from day one (1999) in Ontario.  It is amazing that after 20 years (two full decades!) every Minister continues to deny, deny and deny the truth that is in this city and just a short car ride from Parliament Hill.

But supposing that it was true that no hospital in Ontario was involved with the delivery of ABA treatment for autism.  What would be the basis of the suggestion that just because it was not in the past, it could not be done in the future?  This kind of rationale is reflective of the key principle guiding all government bureaucracies: the preservation of the status quo.  Any creative thinking is always used to think up reasons to not change the existing order of things.  The fact that the medical and scientific community have known since the 1980s that ABA treatment is not only evidence-based but is the only evidence-based treatment for autism (until science comes up with another and hopefully better one and possibly one day a cure) and that it is thus “medically necessary” is apparently something too complex for the Minister and her bureaucrat colleagues to deal with.

But is it surprising that politicians can repeatedly get away with such false arguments?  Who in the autism community, besides me and my friends,  has been making this argument in an attempt to get the Minister to stop talking nonsense and get on with taking a responsible approach to rectify this scandalous discrimination under Medicare?  I scan the media, social media, websites, etc. and I don’t see it anywhere.  Not CASDA, not the Ontario Autism Coalition,  not Autism Canada, not the Autism Society of Ontario (or whatever they call themselves now), and certainly none of the activists who have started to talk up a storm on social media over the past few months in Ontario. etc.   So no wonder the politicians can say such falsehoods and get away with it.  Nobody knows and nobody even seems remotely interested.
<h2>PETITION TO THE HOUSE OF COMMONS</h2>

Whereas:

<ul class=”whereas”>

[Andrew Kavchak]

Hi Folks,

Check out this video news report on the federal announcement today.  There are three things that I think are worthy of note.

First, the person making the announcement on behalf of the government, (the MP is the Parliamentary Secretary to the Minister of Health) made it clear that the feds do not believe that it is their role to step in an fund something that the provinces decided not to fund, or “the way that they’re funding it”.  There.  So we have some indication from the federal Liberals as to why they don’t care about autism.  But then….how do they justify or explain and see the rationale of their own government Bill which they passed into law that required the Minister of Health to work in cooperation with the provinces in developing a National Dementia Strategy that the feds are spending $50 million on?  Why could such a cooperative federalism approach not be used to negotiate the funding and inclusion of autism treatment under Medicare?

Second, one parent who is a founder and leader of the Ontario Autism Coalition was quoted as saying what our community needs. As usual, although he referred to national standards for treatment, he did not say anything about Medicare and moved on to “research”.  Of course, we don’t know what the media edited out.

Third, the star of the announcement was protesting parent Jamie Peddle.  You gotta see it to believe it.

https://toronto.citynews.ca/video/2019/08/19/ottawas-autism-funding-announcement-disappoints-parents/

At the end of the video there is a reference to a rally for Medicare and autism treatment that will take place on Parliament Hill on Saturday, September 21 starting at 11:30 a.m.  At this point there is a good chance I’ll be speaking at the rally.  If you know people who will be around Ottawa that day, please forward this notice to them and ask them to join us!

https://www.facebook.com/events/ottawa-parliment-hill/national-autism-rally-for-medicare/428147901123025/

Here is another report with a clip of the same three people and a reference to the rally.  Note the comments of the journalist at the end about how the MP said this is not an easy issue as we’re dealing with provincial healthcare.  That’s the problem.  We’re not dealing with provincial healthcare when it comes to autism treatment.

https://www.ctvnews.ca/video?clipId=1757386

Here’s another report of the event.  Note the following quote: “Damoff said the federal government isn’t in a position to deliver services for people living with autism — that’s the province’s job — but they can play a role at the federal level. She said Ottawa isn’t working on a national autism strategy, but is working on the “pillars” of such a plan, including information, affordability access, employment, housing and research.”

This is interesting.  A strategy can have several components and the government bureaucrats love to call them “pillars” (as if they were the support beams for some construction job that is elevating something to higher ground).  You can put several of the components together and say that comprehensively they are the government “strategy”, or you can say that we don’t has a strategy but we’re doing things that constitute “action”.  This was the case back in 2007 when Health Minister Clement announced a five point plan (including a brand spanking new autism website!) but was quoted in a media story as saying it is not a National Autism Strategy.  Why would they wish to avoid adopting the expression for autism when they adopt it so easily for anything else (e.g. check out on the government press page the first thing that comes up is “Canada’s First Poverty Reduction Strategy” https://www.canada.ca/en/news.html).

I don’t know for sure, but I suspect the reason is that they are fearful that the adoption of any such autism strategy is guaranteed to be inadequate and that agitation from the autism community to improve the strategy would simply be too much of an albatross around their necks that they would rather avoid.

Regrettably, this has historically been the problem with the two main federal parties.

https://www.cbc.ca/news/canada/toronto/feds-autism-oakville-announcement-1.5252102

So, should we expect anything in the Liberal election platform once the campaign gets going in September?  Based on the statements today from the MP, no.  And from the Conservatives there was a hint from Mike Lake when he appeared on “The Agenda” program on Ontario TV about two weeks ago where he said that his party would have something about it in their platform.  And the NDP already announced that they will do consultations to develop a NAS, but gave no details on what the content of such a NAS would be.

[Andrew Kavchak]

Hi Folks,

Well, I hope nobody lost any sleep over the weekend waiting for this federal government announcement. In the 2018 budget the feds announced $20 million for autism projects, of which $10 million was for a still non-existent autism website.  The announcement today appears to have involved some news about how some of this money on projects is being spent.   The press release is copied below.

News Release
For Immediate Release
Government of Canada Announces New Support for Canadians Living with Autism Spectrum
Disorder and Those Who Care for Them
New projects will promote knowledge and skills development, and increase access to resources
August 19, 2019 Oakville, ON Public Health Agency of Canada
One in 66 Canadian children and youth live with autism spectrum disorder (ASD) – a complex, life-long
condition that presents serious challenges for those living with it, as well as their families, caregivers
and communities. Today, Pam Damoff, Parliamentary Secretary to the Minister of Health, announced
an array of community-based projects to assist and support individuals with ASD and those who care
for them, supported by more than $3 million in funding from the Public Health Agency of Canada and
an additional $1.1 million of in-kind support from partner organizations.
Projects receiving funding will:
 support Canadians living with ASD as well as their families and caregivers to gain knowledge,
skills and resources
 help communities better address the challenges of ASD and assist those living with it.
Quotes
“It gives me great pride to announce six new initiatives to help Canadians living with autism spectrum
disorder live life to the fullest. These community-based projects across the country address a broad
range of issues, from mental health to sexuality to employment. These fantastic programs will support
Canadians living with ASD and those who care for them – where and when they need it most.”
Pam Damoff
Parliamentary Secretary to the Minister of Health
Quick Facts
 ASD is a neurodevelopmental disorder that refers to a range of conditions characterized by
challenges with social skills, repetitive behaviours, speech and nonverbal communication.
 Approximately 1 in 66 Canadian children and youth, aged 5 to 17 years, is diagnosed with ASD.
Boys are identified with ASD four times more frequently than girls.
 The projects announced today were funded through the Public Health Agency of Canada’s
Autism Spectrum Disorder Strategic Fund.
 Budget 2018 allocated $20 million over five years to better support the needs of Canadians
living with ASD, their families, caregivers and communities. Of this overall investment, $9.1
million went towards the establishment of the Autism Spectrum Disorder Strategic Fund to
support community-based projects that provide tangible opportunities for individuals living with
ASD, their families and caregivers to gain knowledge, resources and skills.
 In October 2018, more than $10 million was announced for the Pacific Autism Family Network
and the Miriam Foundation to develop the Autism-Intellectual-Developmental Disabilities
National Resource and Exchange (AIDE) Network, a national website and online resource
centre for Canadians. The AIDE Network will provide online access to credible and evidence-

based ASD information, as well as an inventory of services, employment opportunities and local
programming across the country, in both official languages.
Associated Links
Autism Spectrum Disorder
Autism Spectrum Disorder among Children and Youth in Canada 2018: A Report of the National Autism
Spectrum Disorder Surveillance System
Infographic: Autism Spectrum Disorder among Children and Youth in Canada 2018

– 30 –

Contacts
Alexander Cohen
Office of Ginette Petitpas Taylor
Minister of Health
613-957-0200

Media Relations
Public Health Agency of Canada
613-957-2983
hc.media.sc@canada.ca

Public Inquiries:
613-957-2991
1-866-225-0709

[Andrew Kavchak]

Hi Folks,

For years I was often frustrated by the passivity in the autism community.  I often could not figure out why so few people attended rallies or engaged in lobbying, etc.  Well, things have really changed in Ontario.

As you may recall, the previous Minister of Community and Social Services (MCSS) made a devastating announcement of changes to the Ontario Autism Program (OAP) back in February.  The public uproar and backlash resulted in a cabinet shuffle recently which saw the Minister demoted and a “new guy” moved into the position.  The “new guy” has been doing a lot of smiling and touring the province to put a new face and new spin on the matter of government relations with the autism community.  The initial reaction from the community seemed to be one of relief that the old Minister was gone, but some people said it was all a question of old wine in old bottles with new labels.  Well, here we are…just a brief period into his new job and the Minister had to cut off the public open mic session at a “meet and greet” event “abruptly”.  Why?  Too much heat in the room….(and the radiators weren’t on)….

https://lfpress.com/news/local-news/public-session-at-autism-meet-and-greet-with-minister-ends-abruptly

In a couple of hours the feds are expected to make some sort of autism “supports” announcement.  Maybe they could offer the provincial Minister a portable air conditioner too…

[Andrew Kavchak]

Hi Folks,

Well, as the new generation of autism parent activists become more engaged and active, some are doing some historical (and archival, archeological, etc.) research.  The “autism wars” have been going on for a long time.  While many of the parents of younger kids don’t know the history, some are trying to weave together the evolution (if that is what it is) of the historic fight for the right of access to treatment under Medicare.

One Ottawa parent has been digging up the history and putting it together in a series of articles that he has been posting online. One previous article dealt with the chronology starting around 2006.  However, he now posted another article relating to the Auton case and FEAT BC.  While his essay does not contain any analysis of the judgment and its consequences (or provide any discussion of next steps for the community to keep the ball rolling, etc.) he at least brings to the attention of those parents with the time to read such things a number of historic facts which parents in the community should know.

All great social struggles started somewhere and take time.  Not only are legal fights that went to the Supreme Court of Canada worthy of being remembered for the David and Goliath type of drama, but court judgment(s) have a direct impact on the current state of play.  One simply needs to be aware of the law and incorporate it constructively in one’s advocacy messages, etc.

The essay about Auton can be found here:

https://medium.com/@patrickmonaghan/before-the-pay-now-or-pay-later-report-there-was-the-auton-trial-cdd9798df011

[Author]

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