[Andrew Kavchak]

Hi Folks,

So things are being stirred up a bit in Ottawa.  Yesterday (Sunday) there was a rally on the Hill calling for a National Autism Strategy which got some local media play (too bad there were no politicians looking out their office windows).  However, today Parliament is resuming sitting and according to a news bulletin on the iPolitics site:

“Representatives from the Canadian Autism Spectrum Disorders Alliance join Sen. Jim Munson for the launch of what the advisory describes as a “detailed blueprint” for a national autism strategy that will “call on the federal government to take a leadership role in supporting Autistic  Canadians, as well as their families and caregivers.””

Apparently they will be having a press conference or something at around 11 a.m. Ottawa time (in 30 minutes).  Apparently it will be livestreamed on the CASDA facebook page.  Well, they have a “blueprint” for such a strategy on their website, and I recently sent them an email about it.  I wonder whether they bothered to read it. I copy it below.

Hello CASDA,

I am writing to bring something important for the autism community that was highlighted by this week’s federal budget. Please feel free to forward this message to your colleagues.

I note from your website and “position paper” you indicate that the there is a need for the federal government to develop a “National Autism Spectrum Disorder Strategy”.

(The position paper is here: http://www.casda.ca/wp-content/uploads/2017/10/CASDA-Position_Paper.pdf)

The list of items that you identify which should be addressed in a “comprehensive” strategy is a long one.  However, I am surprised by the lack of references to autism treatment, and specifically, the need to get Applied Behaviour Analysis (ABA) treatment covered by Medicare (Canada’s public health insurance) from coast to coast.  The position paper does not mention “ABA” anywhere. The section on finance refers to tax credits for psychologists, occupational therapists, etc. but does not mention ABA therapists.  But that would be irrelevant if it was covered by Medicare. Similarly, the health section of the position paper is somewhat garbled as it begins by talking about “mental health” issues (which sounds like depression, anxiety, etc.) and then refers to “early diagnosis and intervention”, but it is not clear whether this is to deal with the mental health issues such as depression and anxiety (etc.) or with autism and the application of ABA treatment being the intervention being referred to.  This lack of clarity is frustrating because autism is a neurological disorder, it is certainly a “health” issue, and ABA treatment has been evidence-based for decades (which is why it is offered as autism treatment by the “social services” departments in most provinces.  Yet, the “position paper” does not make your position very clear on this issue. In fact, the position paper marginalizes it or ignores it completely. In the research section of the paper there is no mention of conducting research with the goal of finding a cure for autism, but “better treatment options”. One may ask “better than what?”.

To many parents in the autism community, including me, getting access to ABA treatment for autism covered by Medicare should be at the core of a “National ASD Strategy”.  Of course a comprehensive strategy that addresses other things as well, such as housing, etc. is desirable. But expanding an existing government program has historically been easier than starting a broad-based that includes everything from scratch. One has to start somewhere and that involves the establishment of priorities.  I made a video on the topic of such a national strategy that is available here:

https://www.youtube.com/watch?v=UmG1-95PYIE&t=36s

However, regardless of where one stands with respect to the content of an National ASD Strategy, where does the project stand?  CASDA claims to have been created after the 2007 Senate Committee report.  That’s a long time.  Regrettably, to date, nothing has happened on that front and politicians like Mike Lake have in the past dismissed the idea by suggesting that the matter is a provincial jurisdiction responsibility and have voted against our efforts (e.g., in 2007 when Mike Lake voted against Bill C-304 which contained a provision calling for the development of a national autism strategy – his faulty reasoning was discussed here:

http://featbc.org/downloads/FEATBC_release_02_26_07.pdf).

Yet, the Alzheimer Society of Canada managed to accomplish something spectacular that you should be aware of and try to copy. Please take a look at this:

https://laws-lois.justice.gc.ca/eng/annualstatutes/2017_19/page-1.html

The federal Act is called “An Act Respecting a National Strategy for Alzheimer’s Disease and Other Dementias”.  It was first tabled as Bill C-233 in the House of Commons on February 25, 2016.  It was referred after second reading to the Standing Committee on Health and was passed by the House after third reading on February 3, 2017.  First reading in the Senate took place on February 7, 2017 and it was referred to the Standing Senate Committee on Social Affairs (the same one that issued the Pay Now or Pay Later report in 2007) on March 28, 2017.  The Senate passed the Bill at third reading on June 21, 2017 and it received Royal Assent on June 22, 2017 and became law (S.C. 2017 c.19).

Please see the provisions of the Act.  It is short, to the point, and does not require a legal education to understand it.  In essence. the federal law requires the federal Minister of Health to cooperate with provincial counterparts to develop a national strategy.  The Minister must then report on its effectiveness on a regular basis going forward.

So where does that Act and national strategy stand?  Well, at page 153 of the Budget Plan 2019 which was tabled by the Minister  of Finance on March 19, 2019, we see this gem of a paragraph:

“…in support of the National Strategy for Alzheimer’s Disease and Other Dementias Act, Budget 2019 proposes to provide the Public Health Agency of Canada with $50 million over five years, starting in 2019–20, to support the implementation of Canada’s first National Dementia Strategy, which is expected to be publicly released this spring.”

In other words, the government is allocating millions of dollars to implement a National Dementia Strategy which does not yet even exist!  The strategy in question is only “expected” to be announced sometime in the (near?) future.

As you know, the Liberal Party of Canada (LPC) had a policy convention in 2016 and adopted a resolution calling for Medicare coverage for autism treatment.  This is a fundamental core issue which should be at the heart of a national autism strategy. The resolution is here:

https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/

However, the resolution is not binding on the Government.  Yet, it provided our community, including CASDA, with something to lobby with.  The LPC policy committee apparently created a working group and issued an internal report (not public as far as I know) which it provided to Ken Hardie, MP, who is the liaison person with the Liberal Caucus.  I recently wrote to Mr. Hardie asking him about the status of the matter and he replied to me with this:

“I have made a direct appeal to the Minister of Health as well as to the platform committee to get progress toward the policy resolution.  What I’ve heard this far is that the Health Minister is looking for an initiative to cover a number of issues, rather than a series of disconnected ‘condition-specific’ strategies.  For example, the ALS community is also looking for additional help, and there are others.”

In other words, we can forget about a “National Autism Strategy” Act or policy or any related initiative to specifically address getting Medicare coverage for autism treatment, etc. It would be too “condition-specific”!

Needless to say, the hypocrisy and double standards here are inexplicable. What does the Alzheimer Society of Canada know, and do, that CASDA does not?  How is it that they managed to get for their disorder not only a law that requires national coordinated action, but millions of dollars in a budget for the implementation of a national strategy that does not yet even exist, while the autism community gets….nothing (apart from last year’s allocation of money to create another redundant autism resource website which still does not exist)?

Clearly, there is a successful model out there that is recent, current, alive and being assigned financial resources even in a time of deficit and debt expansion by the federal government.

May I please respectfully suggest that CASDA:

(1) study how the Alzheimer’s Society of Canada achieved their incredible success,

(2) explain to the autism community why CASDA has not been able to achieve anything remotely similar, and

(3) consider whether it would be tin the best interests of the autism community across Canada if the Alzheimer Society leadership with its proven track record were hired to provide consulting services to CASDA with a view to replicating their stunning recent achievements?

Please do not feel any need to respond to my message.  We’ve already had our differences of opinion over the failed CAP project broadcast to the country in various op-eds last year and I’m not looking for any further debate with you as we can better use our energies elsewhere.  I just wanted to bring this situation to your attention.  It is simply stunning that our community can’t get key politicians to even utter the words “national autism strategy” while another organization can get a significant statute and millions allocated in a budget to implement a still non-existent strategy!

Sincerely,

Andrew Kavchak

[Andrew Kavchak]

Hi Folks,

So there was a rally on Parliament Hill this afternoon calling for a “National Autism Strategy”. The Ottawa Citizen already has an article posted about it and…my, my,……there is a reference to the Canada Health Act CHA).  The reference is a little awkward, about recognition of autism as a neurological disorder, and I’m not sure where the person who said that gets the idea that it is a Canadian statute that defines or recognizes illnesses, but the planting of the relevance of the CHA in autism debates is a big step forward. Hopefully it will continue at the next rally on awareness day and they will finally mention the key words: Medicare for Autism Now!

Apparently Senator Munson spoke at the rally today, but Mike Lake did not …. hum, wonder why?  Could it be that he does not believe in a National Autism Strategy and does not want to be associated with the initiative calling for one? … Just wondering.

'Kids are being left behind' — Families rally for national autism strategy

[Andrew Kavchak]

Hi Folks,

The noise levels are starting to pick up around here.

This coming Sunday (yeah, I know, when everything in Ottawa is closed and there will be no politicians or journalists around Parliament Hill), there will be an autism rally on Parliament Hill calling for a “National Autism Strategy”.  Apparently the organizers are hoping that a parade of people will march from the offices of the provincial Minister of Community and Social Services (Lisa MacLeod) which is located in the SW suburb of the city, to downtown and make the link with the need for federal government involvement.  It is absolutely refreshing after all these years to see someone else organize such an event for a change.  I remember how difficult it was for me to get the community involved back in 2004, 2005 and 2006.  I think the largest gathering I ever managed to muster was about 100 people, and most were friends of mine.  At the time the autism community was remarkably passive.

https://www.facebook.com/events/546820902475648/

Shortly after that there will be the international and Canadian “Autism Awareness Day”.  With that comes the annual “Autism on the Hill” autism awareness rally.  The organizers have already posted the list of speakers, which is available at:

http://www.autismonthehill.ca/

Besides the organizer who will introduce and MC the event, it appears that the format and list of speakers is the same as every year.  There will be three “self-advocates”.  In other words, people who are high functioning and able to give speeches in front of crowds.  Based on my past observations, it is unlikely that any of them will discuss the needs of the non-verbal and the value and importance of ABA treatment, especially for the low functioning folks on the spectrum.  In the past some of these “self-advocates” struck me as inadvertently trivializing the challenges of people with classic autism because, as one university “self-advocate” graduate student suggested…the biggest challenge was that you have to “follow your dreams” or something like that.  I’m not sure that her pep talk was understood by anyone who was low-functioning.

Then Senator Munson will speak and say a few words.  Let’s be honest.  He’s our best hope, and he might mention the need for federal involvement in the development of a National Autism Strategy, but he has not tabled any Bill to create such a strategy (notwithstanding the obvious success of the similar Bill that became law for Alzheimer’s and Dementia, etc.).

An NDP MP will speak and will probably say something about support for the community, without saying anything specific, because he never had anything specific to say about autism in the past besides something along the lines of “we support the community”, bla, bla.

And then there will be Mike Lake who will bring his non-verbal son again to stand beside him. Why?  Street cred for some for some in the audience?  What will Mr. Lake say?  If all his speeches since his election in 2006 are any indication, he will talk about his son’s and his family’s experiences and their love for each other, etc.  Any discussion of public policy?  Unlikely.  He never said anything about what are the public policy gaps and what the feds should do to address them.  On March 26 he posted on his Twitter account a picture of himself meeting with Ontario Premier Ford and Minister MacLeod along with these words:

“Very productive meeting w/ <s>@</s><b>fordnation</b> & <s>@</s><b>MacLeodLisa</b> this afternoon. Was happy to share my thoughts – felt very much like I was heard. Thanks to <s>@</s><b>AmyFeePC</b> & <s>@</s><b>JR_Ottawa</b> for facilitating & to Ontario autism community for passionate advocacy. Will continue to help in any way I can.”

Really?  And what were those thoughts that he shared?  Does anyone know? He thanks the Ontario autism community for what? “Passionate advocacy”.  I think it would more accurately be described as “desperate advocacy”. I don’t think he gets it.  Thousands of families are about to experience regression and lost hope.  Families are in crisis and are in serious trouble.  After years on waiting lists thousands of families have just been told that their kids will not be getting the full treatment program that they need but will get a mere fraction of what they need.  Crumbs.  They are in a serious crisis situation.  And he will do what?  “continue to help in any way I can”?  And when he voted against the Bill in 2007 that would have incorporated autism treatment in Medicare and mandated the federal Minister of Health to create a National Autism Strategy, was that opposition of his and contribution to killing the Bill his idea of “helping in any way I can”? How many people in the autism community fall for that kind of misleading stuff?

A few years ago I met the organizer of the Autism on the Hill annual rally and told her how surprised I was that no one mentioned the need for a National Autism Strategy. Well, now they have a reference to it on their website. Yet, what is such a strategy to achieve in her (their) opinion?  On the site it says:

“We continue today to advocate for a National Autism Strategy. Equitable services across Canada throughout the lifespan of people with autism.”

No mention to access to treatment.  No mention of ABA coverage under Medicare.  No mention of following up on the Auton case.  Just “equitable services across Canada”.  Does that mean moving program and service standards up to the highest common factor and leaving it their, or setting some even higher national standards?  Or does it mean reducing program and service standards to the lowest common denominator among all the provinces?

I always believed that a crucial step would be to get more and more people to “buy-in” to the concept, and then at some point we would discuss what would be the components of such a national strategy.  We’re increasingly getting to step one. However, step two is going to require a major effort.  Despite all the protests and demonstrations and desperate advocacy over the weeks, months and years, our community is still not speaking from the same page and is not delivering the same consistent message.  In many ways, our community lacks leadership.

 

[Andrew Kavchak]

Hi Folks,

Well, well…here’s the value of heat.

The media is reporting that the Ontario government is dropping in public support in the latest poll due to the autism fiasco.

https://www.cp24.com/news/pc-support-slips-amid-anger-over-autism-changes-poll-1.4352022

Not surprisingly, at roughly the same time, the media is reporting a Minister suggesting that resource allocations to autism could “double”.

https://www.thestar.com/politics/provincial/2019/03/25/money-for-autism-services-could-be-doubled-ontario-minister-says.html

Not surprisingly, families are “stressed” by all the politics…

New autism treatment rules are stressing families out

[Andrew Kavchak]

Hi Folks,

Congrats to Louise Witt for giving it on the chin!

Surrey mom says Liberal budget falls short in helping people with autism

[Andrew Kavchak]

Hi Folks,

Well, well….after announcing the new government’s changes to the “Ontario Autism Program” and generating a daily storm of protest for weeks, the Ontario conservative government yesterday announced “tweaks” to the changes that include “eliminating” something, “expanding” something else, and “smoothing” yet another thing.  The notice of changes are here:

https://news.ontario.ca/mcys/en/2019/03/ontario-enhancing-support-for-children-with-autism.html?_ga=2.258694026.1099209482.1553252483-51834406.1553252483

So what does this mean?  Well, a few years ago the Ontario Liberal government claimed to have engaged in lots of “consultation” and then announced some changes to the program (which included a cut-off of services at age five!).  This generated a lot of autism community protests across the province in which the Ontario Autism Coalition was a major player.  The result was that the government made some changes.  Last summer the new Conservative government was elected and they too claim to have engaged in lots of consultation and then announced recently their plan to eliminate the wait list and that too generated a lot of opposition from the community.  And now they too end up making some changes.  It would seem that both governments were not very good at their initial consultations and did not anticipate very well the impact and the reaction that their proposed changes were likely to generate.

One of the problems really seems to be that the government (of both parties) really don’t know how to manage healthcare with respect to autism treatment, and part of this problem is probably related to the fact that the treatment is not offered and administered by the Department of Health and covered by Medicare.  Instead, the Ministry of Community and Social Services seems to treat the file like one of its multitude of other problems that need “managing” with a hope that they will go away.  If you take a look at the “news” section of the Ministry website, it lists the news announcements that the Ministry wants the electorate to know about.  The page is here: https://www.mcss.gov.on.ca/en/mcss/news/index.aspx

And what are some of the topics they address? Women escaping violence and sexual exploitation, plans to restore the dignity of those on welfare, and my favourite “Helping people get ahead and stay ahead” (ahead of what?), etc.  Clearly, Ministry staff, bureaucrats, program administrators, etc. have a lot to deal with that has little to do with healthcare.  So why are they responsible for the Ontario Autism Program? What relevant expertise do they have? Why is the autism community in Ontario not asking for a transfer of the program to the Ministry of Health?

And then every once in a while there is another heartbreaking story.  The media is reporting now about one mother in Ottawa who is applying to court to make her child a “society ward”.

https://ottawa.ctvnews.ca/ottawa-mother-heads-to-court-to-make-son-with-autism-a-society-ward-1.4346508

 

[Andrew Kavchak]

Hi Folks,

Well, it’s budget day in Ottawa.

The Minister of Finance’s speech and the budget plan documents are available here:

https://www.budget.gc.ca/2019/docs/download-telecharger/index-en.html

I checked the speech.  I can’t find the word “autism” (if I overlooked it and someone finds such a reference, please let me know).  The budget plan is 464 pages long. I found one reference to “autism” at page 159 in a passage about supporting employment for persons with intellectual disabilities and ASD.  This is what it says:

“To improve employment outcomes for persons with intellectual disabilities, and Autism Spectrum Disorders, Budget 2019 proposes to provide $12 million over three years, starting in 2019–20, to the Canadian Association for Community Living, in partnership with the Canadian Autism Spectrum Disorders Alliance for the Ready, Willing and Able program. The funding will be provided through the Opportunities Fund for Persons with Disabilities.”

When you skim over the budget plan one thing that sticks out is the number of times that the document describes federal government action to deal with any perceived problem as a “strategy”.  And there are plenty of them…e.g., the National Inuit Suicide Prevention Strategy, National Housing Strategy, Strategy on Jobs and Tourism, Middle East Strategy, etc.

However, it is interesting to note that while many federal politicians (e.g., Mike Lake) over the years have suggested that autism issues are health-related and therefore provincial in nature, this budget announces  (p. 153) the allocation of millions of dollars towards a new “National Dementia Strategy” which has not yet even been made public yet!   

“…in support of the National Strategy for Alzheimer’s Disease and Other Dementias Act, Budget 2019 proposes to provide the Public Health Agency of Canada with $50 million over five years, starting in 2019–20, to support the implementation of Canada’s first National Dementia Strategy, which is expected to be publicly released this spring.”

Get it?  The government passed an Act requiring by law that the government develop, in cooperation with the provinces, a national strategy to deal with Alzheimer’s disease and other forms of dementia.  The Act is here:

https://laws-lois.justice.gc.ca/eng/annualstatutes/2017_19/FullText.html

Could you imagine the government passing a “National Autism Strategy Act” and announcing in a budget the allocation of millions in support of a National Autism Strategy that has not even been made public yet???  

One has to wonder….(besides the apparent double standards of some politicians) will the Autism Society of Canada, CASDA, and all those other organizations across the country who claim to be the “voice” of the autism community, please explain to the autism community why is it that the Alzheimer Society of Canada can pull off getting a federal law passed to require federal and provincial involvement in the development of a national strategy and get millions allocated in a budget BEFORE the national strategy is even made public, while those who supposedly represent us can’t do the same for autism?

Perhaps it is time that our community asked the leadership of the Alzheimer Society of Canada to switch jobs and work for us (Hey! You’ve got a proven track record and could use another challenge, right? Please!).

 

[Andrew Kavchak]

Hi Folks,

Remember a few years ago the Liberal Party of Canada (LPC) had a policy convention and adopted an autism treatment resolution to get autism treatment covered by Medicare? It is available here:

https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/

The LPC’s “Policy Committee” then created a working group to study the matter and prepare a report with recommendations relating to its implementation.  That report (which apparently has not been made public but which I have received a draft of and provided comments on) was then given apparently to Mr. Ken Hardie, MP, who is the Liberal Caucus liaison person with the Policy Committee or something.

So…where are we at?  What’s happening?  Is the autism resolution on the way to implementation or what?  Nobody seems to be talking about it.  I wrote yesterday to Mr. Hardie and he replied to me. I then replied to him.  The correspondence is self-explanatory and copied out  below.  I don’t know if Mr. Hardie will respond to my last correspondence, but I hope he passes the exchange on to the Minister of Health, etc.

1) Initial email to Mr. Ken Hardie, MP.

Sunday, March 17, 2019.

Hello Mr. Hardie,

I am writing as a parent of a child with autism who is concerned about the lack of Medicare coverage for autism treatment across this country.

The Liberal Party of Canada passed a resolution at a policy convention a few short years ago to address this question and the policy committee of the party created a working group that drafted a report on the resolution with recommendations on its implementation. If I understand correctly, you are the caucus liaison and the report was given to you for distribution and action.  I understand you had a meeting with the autism community on the matter once.

May I please ask: where does the resolution stand?  What is the “action plan” on getting “buy in” from Cabinet and caucus and implementation of the resolution? What have you done and what are you planning on doing before the election?

As the past month’s media coverage in Ontario has demonstrated, the autism policies in Ontario (and the same applies across the country) are absolutely inadequate and a disgraceful scandal.

Yesterday a letter was published in an Ontario newspapers which hit the nail right on the head: “Autism should be funded by Ministry of Health”.

https://www.therecord.com/<wbr />opinion-story/9224301-autism-<wbr />should-be-funded-by-ministry-<wbr />of-health/

Thank you.

Sincerely,

Andrew Kavchak

2) Mr. Hardie’s response.

Sunday, March 17, 2019.

Hi Andrew,

I have made a direct appeal to the Minister of Health as well as to the platform committee to get progress toward the policy resolution.  What I’ve heard this far is that the Health Minister is looking for an initiative to cover a number of issues, rather than a series of disconnected ‘condition-specific’ strategies.  For example, the ALS community is also looking for additional help, and there are others.

As a follow-up to the meetings we had in Surrey a few months ago, I’ve also asked the Minister to convene a round table of provincial Health Ministers to try and get some standardization and improvements in support for parents of kids with autism.   We’ve yet to see the draft platform yet, but that should be coming out in the next couple of months.

Ken

3) My response to Mr. Hardie.

Monday, March 18, 2019.

Thank you Mr. Hardie for your prompt and informative reply.

I’m sorry to hear that the Minister is not interested in implementing the party’s autism resolution, which you describe as a “disconnected ‘condition-specific’ strategies”.  The last time I checked, the resolution that the party approved was about the lack of Medicare coverage for autism treatment. Getting Medicare coverage for autism treatment is hardly a move that can be described as “disconnected”.  It is precisely to end the historic discrimination and get autism treatment connected to the healthcare coverage that all other illnesses have enjoyed for decades.

As you know, there is no known cure for ALS but the FDA has approved two drugs (Riluzole and Edaravone) that can be used as “treatment” which can be expected to no more than slow the progression of the disease. Of course further research, including clinical trials of ALS stem cell treatments, etc. should be conducted where appropriate. Are Health Canada and PHAC not already regulating these? Where is the discrimination against sufferers of ALS that needs to be corrected?

Is the Minister of Health really setting aside a serious crisis in the autism community, and ignoring the party’s resolution on the matter, because a group of other Canadians suffering from an incurable disease are “looking for additional help”?  If that is the excuse for doing nothing to help get autism treatment under Medicare, then let’s face it: the autism community will never get what it needs because there is always some other community asking for additional programs and services.

The party debated this matter and two levels of courts in B.C. already declared that the Medicare system has been discriminating against autism sufferers because their core healthcare needs are not met under Canada’s public health insurance program.  The “general” statements in the Canada Health Act have not provided the coverage that Canadians with autism need.  “Specific” corrective action is required. This specific correction action can take various forms (legislation would not be necessary if the provinces were “incentivized” by other means). All the Health Accords with the provinces and territories could be re-negotiated either before or after their expiry.

The fact that the ALS community “is looking for additional help” now appears to be a convenient excuse to do nothing.  Divide and conquer.  Pit one group of disabled Canadians against another.  Is that the Canadian way?  Is that the Liberal Party of Canada way?

Let’s be frank: last year’s budget announcement of $20 million over five years to fund the creation of yet another website and anti-stigma (“awareness”) campaigns was a meaningless waste and a rather pathetic attempt to give the impression of a responsive government.  A full year later there is still no website and awareness of the challenges and discrimination faced by the autism community, and corresponding concern or interest by politicians who could do something about it, has not, in any material or tangible way, improved.  Based on the message in your email, it does not appear that the autism community should expect anything in tomorrow’s Liberal budget either.

Alas, another four-year government mandate squandered.

When is the next election again?

Sincerely,

Andrew Kavchak

[Andrew Kavchak]

Hi Folks,

For those who have been keeping tabs on the autism beat in Ontario, one of the depressing things that is crystal clear is that even though so many people have spoken up across the province to express their frustration with the government’s policy announcement, it is absolutely stunning how so many of them, from organization leaders to parents to employees in the industry, have missed many opportunities to express a critical message: “Medicare for Autism Now!”

One of the key problems with autism programs across the country is that treatment, where it is offered, is not done by the Ministry of Health and covered by Medicare.  In Ontario, it is the Ministry of Community and Social Services that has been providing the little bit of autism treatment that has been available in Ontario since 2000 and which had recently a whopping 23,000 kids on a “wait list” that the government is now trying to get rid of.  Yet, when I watch TV news reports and current affairs shows, or listen to the radio, or read the newspaper reports, no one is ever quoted saying “why is autism treatment delivered by the Ministry of Social Services and not Health?”  Once on a panel discussion on TV I saw on ABA therapist make the suggestion that “there should be more ministries involved, including health and education”.  Well, that was a step.

I remember receiving a call around 2007 from the then President of the Autism Society of Canada (I think her name was Fenton or something like that) who told me that she “did not care” which ministry delivers the treatment, as long as the kids who need it get it.  Well, it is an important issue and unfortunately too many people don’t understand it.  Medicare has been our national public health insurance for decades and  the law behind it (the “Canada Health Act”) sets out the primary objective of Canadian health care policy, which is <q>to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers.</q>

Other departments don’t have the expertise or the resources.  What other illnesses, disorders, diseases, syndromes or conditions are cured or treated by other departments than health?  Ontario’s Ministry of Community and Social Services has a number of major programs that are listed here:

https://www.mcss.gov.on.ca/en/mcss/index.aspx

Why would autism treatment be the responsibility of the department that deals with “Ontario’s strategy to end to human trafficking” or the provision of financial and employment assistance to those in need?  Is autism treatment the same as welfare in the eyes of the government and its bureaucracy?  And of the leaders of the autism community who claim to be our community’s voice? Needless to say, those who need it have not been getting it.  A major step in the right direction is to get autism treatment covered by Medicare.  Thank you to all the families involved in the Auton case on this point that went to the Supreme Court of Canada in 2004.  Unfortunately, the court stated that since it is a matter involving the spending of public resources, it is a matter that is entirely up to the legislatures (and we have a Charter of Rights and court system for what again???).

But guess what?  Someone finally wrote a letter that got published on the topic in this province.

https://www.therecord.com/opinion-story/9224301-autism-should-be-funded-by-ministry-of-health/

The letter, titled “Autism should be funded by Ministry of Health” was published today in the Waterloo Record.  Here is the first paragraph:

“Autism has been known to be a neurological disorder, like muscular dystrophy or multiple sclerosis, since 1965. As such it should be funded as they are under the Ministry of Health rather than Ministry of Community and Social Services. The funding should not be determined by use of services or parents’ income; these criteria play no part in the funding of other neurological disorders.”

Bravo to author Kathryn Craig for saying what no one else seems to be aware of or willing to say (notwithstanding years of “autism awareness” campaigns).  Have you considered presenting yourself as a candidate to take over the leadership of the Ontario Autism Society? Please?

[Andrew Kavchak]

Hi Folks,

Over the past few weeks the Ontario media has been absolutely relentless in carrying stories about the government’s changes to the Ontario autism treatment program and the resulting protests by parents.  Last week the media carried a story about a police detail being assigned for security reasons to the Minister.  Now the media is reporting that some parents went to a provincial MPP’s office and refused to leave until they spoke to someone (the MPP was not in) and the staff called the police.

Cornwall MPP stands by staff's decision to call police on autism parents

Other developments: rather than helping kids with autism get access to treatment, the government’s planned changes (which apparently will come into effect starting April 1) have already had one terrible consequence: therapists at “autism clinics” are losing their jobs!

https://ottawa.ctvnews.ca/layoffs-starting-at-autism-clinics-in-ontario-as-new-autism-funding-changes-loom-1.4336588

Experts are apparently calling for the government to delay implementation of their proposed plan:

https://www.thestar.com/politics/provincial/2019/03/14/autism-changes-should-be-delayed-experts-urge-ford-government.html

The kids who are no longer going to be getting full-time ABA treatment will be flooding the school system and school administrators have started ringing alarm bells. So the government announced some financial contributions and plans for teacher training, none of which impress some parents:

https://www.cbc.ca/news/canada/ottawa/ottawa-autism-funding-parent-reaction-1.5052362

And of course, how could a little prolonged pressure for autism be sustained without spokespersons for other disabilities getting worried that they were being sidelined (this reminds me of how back around 2006 the Ontario Autism Society released a paper saying that all the focus on getting treatment for young newly-diagnosed kids was taking attention and resources away from the needs of adults with autism – how’s that for dividing a community?):

https://www.thespec.com/news-story/9223311-group-worries-kids-with-other-disabilities-forgotten-amid-autism-crisis/

But the most interesting news of the week has got to be the benefits of donkey therapy:

https://www.pbs.org/newshour/show/how-donkeys-are-helping-kids-with-autism-process-their-feelings

So where can one find a donkey in Ottawa?  Hmm…

 

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