[Andrew Kavchak]

Hi Folks,

Yesterday (Monday, June 11, 2018), there was a debate in the House of Commons regarding Motion 157 which addresses accessibility issues for disabled people when it comes to construction of homes, etc.  During the debate Rachael Harder (an Alberta Conservative MP) made a speech and I reproduce a part of it below where she refers to autism:

“The Liberals like to use words like “compassion” and “inclusion”, but the action for persons with disabilities is not there. It was the same story for the Canadian autism partnership. After years of work from every significant stakeholder in the autism community, the model for the Canadian autism partnership was finally ready to launch. Instead, all the hard work went to waste, as the Liberal government refused to fund it.

For one-tenth of the cost of this weekend’s G7 summit in Quebec, the Liberals could have provided national leadership on research and treatment for autism. However, apparently, the autistic community was asking for more than what the government was able to offer.”

Once again we are seeing the creation of mythology and legend regarding the CAP project as well as the usual partisanship.  She criticizes the Liberals for their lack of “compassion” and “inclusion”, but what was the previous government’s record? She portrays the CAP project as being supported by every “significant stakeholder” in the autism community, which means, I guess, that anyone who was against it was “insignificant” (gee, thanks).  The fact that the national autism society subsequently withdrew their support for the project and withdrew from the CASDA alliance that was behind the CAP thing apparently did not register.

And just how was the CAP thing going to provide “national leadership on research and treatment for autism”?

To re-CAP, the project proposed the creation of a new bureaucracy that was going to engage in “issue identification” (as if they were not already known) and its proponents (e.g., CASDA) were so anxious to broaden the list of priorities that issues like access to treatment would likely drown at the bottom of the pool while issues like “community safety”, “dental care”, etc.  crowded the stage.

 

 

[Andrew Kavchak]

Hi Folks,

Otto von Bismarck is often referred to as suggesting that the making of laws was similar to the making of sausages…and not a pretty sight.  However, he could have also elaborated on the development of policy and its transition into statutory format as also potentially being a painfully frustrating process that can test the limits of human endurance.  

Do you remember the Liberal Party policy resolution on autism treatment in Medicare? Well, what happened to it?

It was a huge accomplishment to get it on the agenda at the Liberal Party policy convention in 2016 in Winnipeg.  The resolution was approved and adopted by a vote of the participants at the convention.

The text of the resolution is available here:

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

So….what happened? 

In the summer of 2017 I had a meeting (over coffee in a restaurant in Ottawa) with David Hurford. He Liberal Party of Canada “Policy Secretary” (or something like that) and he told me that they were going to set up a “working group” to develop a report on the resolution.  He explained to me that the report would be intended for the government (Cabinet and Liberal caucus, etc.) to outline the issues relating to the resolution and elaborate on how it could be implemented.  The purpose of the report would be to assist in getting the resolution implemented (i.e., to turn a public policy concept into an actual government program, possibly with related legislative initiatives if necessary).  He indicated to me that this approach had been successful on previous occasions, and he seemed quite proud of the fact that a similar report had influenced the government’s decision to move forward with the legalization of cannabis. 

A few months later I was consulted on the phone by someone on behalf of the working group.  I spent 30 minutes on the phone explaining my understanding of the resolution and suggesting what should be in the report.  I subsequently asked for a copy of the person’s notes of our conversation and made some comments on those notes to ensure that my main message about the need to get autism treatment (ABA) covered by Medicare was crystal clear.  

In early May 2018 I received a copy of the “draft” report from both the Medicare for Autism Now (MFAN) folks and separately from David Hurford of the Liberal Party.  It appeared that a draft report was being distributed for comments to those who were involved in the consultations and its preparation.  The MFAN folks indicated that at the beginning of the process they provided the names of 10 people for the Working Group to contact, and their information was that only one (me) was contacted by the Working Group for consultation purposes. The MFAN folks suggested that the draft report was somewhat flawed and they sought comments on the draft report from a group of people. I understood that they were going to use the feedback as input into their response to David Hurford and the Working Group. 

When I received the report I immediately read it and provided detailed comments to both MFAN and David Hurford.  After waiting for such a long time to see the report, I was somewhat stunned by how thin it was. There were few details and it struck me as something that was not likely to clarify much for readers who were not previously very familiar with the issues.  I know some people put some major time and effort into the project, but it did not meet my expectations.  Just one example: the resolution is pretty clear that it calls for the inclusion of ABA treatment for autism under Medicare.  However, the report concludes that there is an “absence of any consensus on a common definition of ‘science-based’ treatment” and recommends that the government should “recognize these current differences” and “work to establish a common standard that can include Applied Behaviour Analysis”. Get it?  It is no longer about ABA, but “ABA plus”.  If getting the governments across this country to fund ABA treatment is hard, how much harder would it be to get them to fund “ABA plus”?  To me, such features of the report risk sabotaging the whole project, or at least sending everyone back to square one (this is like being subjected to an endless game of “Snakes and Ladders” which is getting a little tiresome).

To put it in context, the House of Commons Standing Committee on Health issued a report on the development of a national pharmacare strategy (“Pharmacare Now”) on April 18, 2018, and called upon the Government for a response. The report is available here:

(https://www.ourcommons.ca/DocumentViewer/en/42-1/HESA/report-14/)

The pharmacare report is 140 pages long and contains sections dealing with background and context, what is pharmacare, the jurisdictions and roles of governments, collaboration between the federal and provincial governments, overview of the current state of drug coverage and drug plans across the country, comparison to other countries and lessons learned, critical challenges, issues, options and recommendations.  Sounds pretty comprehensive, eh? 

In contrast, the draft report on the autism treatment resolution that I saw was 13 pages long and included a series of appendices (such as the reproduction of the entire Senate Committee report from 2007 and PHAC report of 2018 on autism prevalence) which added another 102 pages.

I asked Mr. Hurford to let me know when the report was going to be finalized and to send me a link to wherever it may be posted on the net.  Well, I have not received any follow up and I gather that he may no longer have his policy position with the Liberal Party anymore (his name does not appear on this list of Liberal Party executives: https://www.liberal.ca/national-board-of-directors/).

With respect to MFAN’s consultation process on the draft report, I understand that of the half dozen or so people that they sent the draft report to for comments, only two responded to date (me and someone else), and MFAN has not prepared or submitted its own comments on the draft report. 

There is an election coming up, probably in 2019.  As we approach the election, I suspect the Liberals will focus on fulfilling a few previous promises to set themselves up for re-election on the basis of their “record”.  At this point I fear that the likelihood of any major steps forward on this file are unlikely.  In the meantime, the Liberal Party had another policy convention this year and as time goes on the resolutions from previous conventions years ago may be relegated to the ash heap of history. 

Ever get the feeling you’re going nowhere fast?

[Andrew Kavchak]

Hi Folks,

Yesterday (Tuesday, June 5, 2018) Mike Lake made a speech in the House of Commons in which he seemed to be complaining about how the Liberals not holding as many “free votes” as he would like. At one point, he refers to “autism” again to make his point (without mentioning his son).  The paragraph is copied below:

” Those who watch the proceedings in the House of Commons on CPAC could go back to the 10 years we were in government. The Conservative Party had more free votes than any party in the House of Commons at that point. The Liberals at that time were second. The NDP whipped its vote more than any other party. However, what we have now seen is the Liberals whipping their vote like no other government we have seen in the past. I will speak from personal experience. I moved a motion almost exactly a year ago on a Canadian autism partnership, which seemed to have strong support from Liberal members when I talked to them ahead of time. We had 12 of them show up on the Hill for World Autism Awareness Day, but when it came time to vote on the measure, they were whipped and every single one of them voted against having a Canadian autism partnership, which would have cost all of $20 million over five years. It was a partnership that experts had been working on for a couple of years. Clearly, that did not fit any of the Liberal exceptions and yet Liberal members were whipped to oppose it. Here is the clincher. In the mandate letter tracker, the Liberals have given themselves an A-plus on that, meaning it has been completely and fully met. The Liberals apparently have free votes on every single vote that does not fit those exceptions. Hopefully, the Liberals in the House right now who are looking at their computers are putting an X beside that one, and maybe they can answer that in their comments as we move forward.”

Do I get his point correctly?  Is he really suggesting that the Liberal MPs are hypocrites and bad people because while 12 of them showed up to a rally to recognize World Autism Awareness Day and then voted against his “Canadian Autism Partnership” project motion for funding? And what would he call Conservative MPs who came to our rallies on the Hill when they were in Opposition and then subsequently (when they were the government) voted against Shawn Murphy’s Bill (Bill C-304 in 2007) to create a National Autism Strategy and get autism treatment covered by Medicare?  If I remember correctly, the Conservatives and the Bloc voted against the Bill without exception, and Mike Lake even issued a statement denouncing the Bill. So what is that?  Support for the autism community or hypocrisy?  Where was Mike Lake’s complaining about the Conservative Party “whip” making sure that all the Conservative MPs voted against the Bill?  As a parent of a child with autism, could he not at least try to make a case with his Party’s whip that he should be exempted? Does not look like it.  Instead, he issued a “media statement” denouncing the Bill.  Oh sure, the Conservatives voted for Andy Scott’s National Autism Strategy Motion (M-172 – back in 2006), but those Motions are non-binding and the Conservative government did nothing afterwards.  Nothing.  They never even used the words “National Autism Strategy”.  Oh, I know, I know, Health Minister Tony Clement announced the day before one of our rallies in 2007 that the government would hold an autism conference (closed door and “by invitation only”) and create a website, but something helpful I mean.  I find it sad that while he denounces the Liberals for not supporting his CAPP thing, as far as I know, he has not (yet) publicly stated anything about the Liberal budget’s autism provisions.  I would have expected him to complain about how the budget provisions are inadequate and don’t compare to his CAPP thing, but so far nothing (I may be wrong and unaware of some statement he made – if anyone knows of a statement of his on this subject since the budget, please let me know!).

Party whips are as old as political parties and Parliamentary democracy and have always had the role of ensuring party discipline, particularly when votes are taking place.  Nothing new there.  If Mike Lake really can’t stand it, perhaps it is time for him to resign his seat and pursue an alternative “whipless” career.

Regarding his reference to the cost of his CAPP project, he refers to $20 million.  In fact, the projected cost as outlined in the project document was $19 million (see: http://www.capproject.ca/images/pdf/CAPP_Executive_Summary_EN.pdf).   Simple error?  Perhaps he forgot the details of his pet project.  Confusion with the Liberal budget plan to spend $20 million on a website and anti-stigma awareness campaign?

 

 

 

[Andrew Kavchak]

Hi Folks,

Yesterday (Monday June 4, 2018) in the Senate another speech was made relating to autism:
<h2 id=”16″>”Autism Spectrum Disorder</h2>
<b>Hon. Leo Housakos: </b>Honourable senators, as I have spoken about many times in this chamber, the challenges faced when dealing with autism spectrum disorder, or ASD, continue to be well documented. At present, 1 out of 66 children receives a lifelong diagnosis. In essence, ASD is the most common neuro-developmental disorder diagnosed among children in Canada, occurring in all racial, ethnic and socio-economic groups.

The quality of Canadian expertise in autism care is not in question. It is with great pride that we can acknowledge a wide variety of organizations in our great nation that are working diligently to improve what is a complex situation. However, as we identified in the Senate’s 2007 report <i>Pay now or pay later</i>, the startling reality is that we, as a government, continue to underfund the resources needed to help an ever-increasing number of Canadian families.

The obvious lack of a national strategy and the necessary resources to assist families and organizations confronting ASD was the focus of the Senate’s Autism Awareness Month last October, in which Senator Munson, Senator Bernard and I all took part. At that time, we invited Health Minister Ginette Petitpas Taylor to meet with us to discuss the state of autism care in Canada and what the federal government is doing about it. Minister Petitpas Taylor did meet with us and was generous in both her time and interest in this important matter.

Further to that meeting, the minister visited two organizations in Montreal last week — Giant Steps school and resource centre, and the Transforming Autism Care Consortium, or TACC — that are working hard to provide services to people living with ASD and to conduct autism research. While efforts such as those of Giant Steps and TACC must be commended, without sufficient support from the federal government, they — and other organizations like them — are facing a daunting task.

So where do we go from here? I am encouraged by the minister’s interest in this important issue that affects several hundred thousands of Canadians, and I would like to thank her for taking the time to visit these two organizations in Montreal that are playing such a key role. We must continue to work together as parliamentarians, regardless of our political stripe, to support Canadians living on the autism spectrum. The time to act is now. Whether focusing on research and early intervention, family support services, or job training, the time has come to develop a government-led national strategy to deal with this ongoing crisis. Thank you, colleagues.”

While it is nice for the Senator to speak about autism and the need for a national strategy and federal action, what he said raises some questions.  It is obvious that the Senator is using polite and respectful diplomatic language in relation to the Minister, but let’s get real….what counts is action.  Listening is a first step, but was there any follow through?  The speaker did not mention the budget, and perhaps for an obvious reason: there was no much there apart from $20 million over five years for a website and anti-stigma awareness campaigns.  Yes, the Minister now visited two autism organizations.  Hopefully the Minister learned something and may have been prompted to recognize that the recent budget measures are hopelessly inadequate.

But what did the people at the organizations tell the Minister?  What messages did they convey?  The only thing I am pretty confident in suggesting is that they probably tried to make themselves appear as important as possible and suggest as effectively as possible that they could be even more useful to the community if they had more money and security of a stream of growing future financial contributions from the government.  Did they talk about ABA treatment for autism and the need to provide it under Medicare?  Probably not.  But I’m just speculating as such issues are not addressed.  I’m glad that the Senator made a reference to “early intervention” at the end, but did the Minister hear and “get it”, or just going through the photo-op visits so the “been there, done that” list can be checked off?

 

 

 

 

 

 

 

“Autism Spectrum Disorder

<b>Hon. Leo Housakos: </b>Honourable senators, as I have spoken about many times in this chamber, the challenges faced when dealing with autism spectrum disorder, or ASD, continue to be well documented. At present, 1 out of 66 children receives a lifelong diagnosis. In essence, ASD is the most common neuro-developmental disorder diagnosed among children in Canada, occurring in all racial, ethnic and socio-economic groups.

The quality of Canadian expertise in autism care is not in question. It is with great pride that we can acknowledge a wide variety of organizations in our great nation that are working diligently to improve what is a complex situation. However, as we identified in the Senate’s 2007 report <i>Pay now or pay later</i>, the startling reality is that we, as a government, continue to underfund the resources needed to help an ever-increasing number of Canadian families.

The obvious lack of a national strategy and the necessary resources to assist families and organizations confronting ASD was the focus of the Senate’s Autism Awareness Month last October, in which Senator Munson, Senator Bernard and I all took part. At that time, we invited Health Minister Ginette Petitpas Taylor to meet with us to discuss the state of autism care in Canada and what the federal government is doing about it. Minister Petitpas Taylor did meet with us and was generous in both her time and interest in this important matter.

Further to that meeting, the minister visited two organizations in Montreal last week — Giant Steps school and resource centre, and the Transforming Autism Care Consortium, or TACC — that are working hard to provide services to people living with ASD and to conduct autism research. While efforts such as those of Giant Steps and TACC must be commended, without sufficient support from the federal government, they — and other organizations like them — are facing a daunting task.

So where do we go from here? I am encouraged by the minister’s interest in this important issue that affects several hundred thousands of Canadians, and I would like to thank her for taking the time to visit these two organizations in Montreal that are playing such a key role. We must continue to work together as parliamentarians, regardless of our political stripe, to support Canadians living on the autism spectrum. The time to act is now. Whether focusing on research and early intervention, family support services, or job training, the time has come to develop a government-led national strategy to deal with this ongoing crisis. Thank you, colleagues.”

[Andrew Kavchak]

Hi Folks,

Yesterday in the House of Commons (Thursday, May 31, 2018) there was some debate over Bill C-395, “An Act to amend the Federal-Provincial Fiscal Arrangements Act” (short title is “Opportunity for Workers with Disabilities Act” with respect to a motion that it be “read the second time and referred to a committee”.   As you may recall from an earlier posting, Bill C-395m the Bill was sponsored by former conservative cabinet minister Pierre Poilievre.  The Bill’s summary description is “This enactment amends the Federal-Provincial Fiscal Arrangements Act in order to ensure that persons with disabilities do not lose more through taxation and the reduction of benefits than they gain as a result of working.” More information about the Bill and its current status of digestion in the guts of Parliamentary is available here:

http://www.parl.ca/LegisInfo/BillDetails.aspx?Language=E&billId=9632317

 You may recall that Pierre Poilievre is the politician who somewhat cynically had an op-ed published while he was in opposition calling for action for autism (including amending the Canada Health Act to include autism treatment under Medicare), and when he was subsequently on the government side he voted against such a Bill that was tabled by an opposition Liberal MP.  Well, now he’s in opposition again, and now that he is out of power he has taken some initiative with the intent of helping people with disabilities.  Well, one of the speakers yesterday was none other than Mike Lake.  His speech is reproduced below, followed by some comments.

<b>“</b><b>Hon. Mike Lake (Edmonton—Wetaskiwin, CPC)</b><b>: </b> 

 

Mr. Speaker, Abraham Lincoln once said, “If there is anything that a man can do well, I say let him do it. Give him a chance.” In 2018, of course, we refer to people instead of men, but the message is still the same.

 

While I would suggest that all of us in this place would agree with this sentiment, there are areas where we can do much better in this regard, and we are talking about one of them this evening. For people with disabilities in Canada today, we do not do enough to recognize and cultivate skills and abilities. Rather, we tend to focus almost exclusively on the challenges. When we do recognize an area where an individual can contribute, we often do something that is almost inconceivable: We actually penalize people who are able to overcome the odds and find a job. In 2018, in Canada, individuals with a disability can get a job that properly compensates them for their work, but end up being worse off than if they had not been working. This is because governments take away more in benefits than the individuals make in their new job.

 

With this simple piece of legislation we are dealing with today, we have the opportunity to change that. As the parent of a 22-year-old son with autism, I would like to thank the member for Carleton for this very important and non-partisan initiative. After quoting a Republican, Lincoln, I will quote John F. Kennedy to highlight the non-partisan nature of this discussion. He said, “Things do not happen. Things are made to happen.”

 

With this bill, we have the opportunity to show federal leadership to make something happen while respecting provincial jurisdiction. The bill is quite brilliant in its simplicity. It is just a page and a half long and sets in place a mechanism to determine areas where the clawback of income in terms of taxes and lost benefits for persons with disabilities who work is greater than the income they receive from that work. When such a situation exists, the bill would allow the finance minister to take action to fix the problem. This may seem like common sense because it is common sense, and it is incumbent on us to make it happen.

 

Others will talk a bit more about the details of the opportunity for workers with disabilities act, but I am going to use the rest of my time today to share a bit about my son Jaden, and use his example to highlight the importance of this bill.

 

Jaden and I travel around the country and do a presentation called “Expect More, An Autism Adventure”. We talk about the idea that we can move from inclusion, which is really important, to contribution. When I talk about inclusion in Jaden’s life, I talk about things like his schooling, the school system he went to from K to 12 with a full-time aid helping him. I think about hockey and bowling, where he took part on regular teams in regular leagues, often with a bit of support from his dad or some of the other coaches. I think about musical theatre. His story in musical theatre is really a cool one that I will get to in a second. Jaden has some challenges, of course. He is non-verbal, and everybody in this House has probably met Jaden at one time or another and given him a high five. He has trouble with things that are abstract.

 

I like to tell stories about Jaden to highlight some of his difficulties understanding what is okay and not okay. I think back to when he was nine years old and we went to McDonald’s at West Edmonton Mall between Christmas and New Years. We were picking up food for a bunch of people and were walking out and I was not holding his hand because I was carrying all of this food for these people. Because I was not able to hold his hand, Jaden had a bit of free reign. All of a sudden, he got the giggles and turned around and ran back to the counter at McDonald’s and ran behind the full length of the counter. He reached into the bin where they hold the crushed Smarties in front of everybody in line, and grabbed a handful of crushed Smarties and stuffed them in his face. He was eating these crushed Smarties with the biggest smile on his face while about 70 people in line—it was very busy—looked on and were somewhat aghast at the situation. I just ran to him, found someone who looked like a manager, and quickly explained that Jaden has autism, and we walked out.

 

We often talk about these challenges, but what I love about Jaden’s situation and the inclusion story of Jaden, his situation in school, was the fact that Jaden had a very supportive environment. When I think about musical theatre, I think about the teachers and students who were involved in musical theatre who, because they had gone to school with Jaden for 10 years leading up to his grade-10 year, recognized that Jaden loved theatre, movies, and music and thought that he might be able to have a part in a musical theatre production. The first year, they did <i>Oliver!</i>, and they put Jaden in a group scene where he practised the moves and took part in a couple of group scenes, and kids were on the side of the stage watching to make sure he did not take off and just wander offstage. The second year, they pushed him a bit further. They did <i>Bye Bye Birdie</i>. There were some scenes with choreography. They were able to teach Jaden the choreography.

  

The third year, his last year of musical theatre, in <i>Joseph and the Amazing Technicolor Dreamcoat</i>, one of the girls, in her senior year, asked if she could be Jaden’s wife in the play. There were many scenes where there were couples dancing, and she taught Jaden to kind of improvise in those scenes. When the other boys picked up the girls and threw them in the air, Jaden put his hands on her hips and she jumped, to make it look like he was throwing her in the air. It was amazing. He did much better than anybody thought he could do. It was a perfect example of inclusion.

 

However, it is one thing to look at inclusion; it is another thing to look at where we go beyond that. Inclusion offered the opportunity for people to see what Jaden was good at, but the school was challenged with finding a next step for him, something I call moving from inclusion to contribution. We talk about this often.

 

In Jaden’s case, because he had been included in so many different aspects of school life all these years, there were kids who remembered what he was good at. They remembered that, up until grade 4, he was the first kid to do times tables, or that he got 100% on most of his spelling tests, because he sees the world a little differently than everybody else. Jaden did a great job in musical theatre, better than we ever thought he would, but, to be honest, even as his father, I would admit that Jaden is probably not going to have a career in musical theatre. He did better than we thought he would, but musical theatre is not necessarily his calling or gift.

 

However, it did challenge people to think that maybe he was capable of doing more than they thought. His aide and the school, the teachers and the students, had him working in the school library. Jaden was astonishing, working in the library. He would scan the books, put them all in a pile, put them on the cart in order, and then run around the library putting them away. He would put them away faster than anybody else.

 

It was pretty cool watching Jaden in the library. Not only would he put the books away faster than anybody else, never making a mistake, but he would walk by books that were already on a library shelf and would notice that they were in the wrong place, out of all of the books on the shelf. He would grab them as he was walking by, put them on his cart, and when he got to where they belonged, he would just put them where they belonged without even skipping a beat.

 

Jaden has this incredible skill and ability that were noticed by students and teachers as he was going through his schooling. As we move forward, we ask what the vocational opportunities for Jaden are. We can think about how much work went into developing, understanding, and cultivating Jaden’s skill level and finding those abilities. Now Jaden is going to potentially have the opportunity to work in a school environment or a library environment, or something similar to that.

 

The circumstance in this country right now is that Jaden may have that opportunity to work. Jaden is incredibly excited to work; he cries at the end of his shift because he wants to keep working. I do not know how many members in the House cry at the end of their House duty, but it is probably not because they want to keep it going. In Jaden’s case, that is how much he loves working. We are in a circumstance where Jaden could be worse off when he is working, because of these clawbacks, these systems we have in place. However, we can remedy that with the particular piece of legislation we are dealing with today.

 

I would challenge members of the House to think about Jaden’s circumstance. We can think about the decision that we have to make for him, or that people with disabilities might have to make. They can go out and do something they are good at. They can make a decision to be compensated fairly for the work they do, or they can volunteer for that work, doing it for free, and they would be better off financially. That is an insane choice to have to make. How many of us think that this would be okay, if we had to make that choice? If Jaden was to work for free, he might be better off financially than if he was to actually get paid what his work is worth. That is the circumstance we are dealing with. That is what this bill is meant to solve.

 

I want to thank the member for Carleton for bringing forward this very important issue. I know that he worked very hard to find something he could use his private member’s bill on that would be non-partisan in nature and that members from all parties could support.

 

I talked to a couple of NDP members today, and I know the NDP will be supportive, as it supported the Canadian autism partnership last year. It is quite a thing to find Conservative and NDP members in agreement on issues, but there are a couple of areas where we did find some agreement. I do not know what the Liberal position is on this, but I hope the Liberals will also support this. I am thankful for the opportunity to speak to this, and I look forward to hearing the rest of the debate.”

 

Comments:

 

1.       Lake’s statement that “For people with disabilities in Canada today, we do not do enough to recognize and cultivate skills and abilities” is true, and demonstrably obvious by the lack of treatment for autism available under Medicare to help with the cultivation. Lake had the opportunity to mention and address this huge public policy gap, but instead only mentions that his son had an “aid” in the school system.

2.       It is hard to determine what is more irritating: Lake’s trying to convince listeners that he has read and understood texts by Lincoln and Kennedy by quoting them, or his repetition, whenever the conservatives propose something when they are in opposition, that it is a “non-partisan” issue.  Poilievre is very partisan and Lake is not much different.

3.       “With this bill, we have the opportunity to show federal leadership to make something happen while respecting provincial jurisdiction.”  Really? We’ve been asking for “federal leadership” in developing a “National Autism Strategy” for a long time, and I don’t recall Lake ever talking about federal leadership in that context. Historically, his frequent reason for non-action is the risk of encroachment on provincial jurisdiction (something that has been negotiated between the federal and provincial governments for decades in many areas). He now assets that this Bill respects provincial jurisdiction. Of course, that’s not the view of the speaker who spoke immediately after Lake (a liberal MP) who claimed that it violates provincial jurisdiction.  How predictable!

4.       Lake could have spoken about the Bill by discussing its contents with examples of how disabled people were currently unfairly impacted by the benefits and taxation system, how this Bill may remedy the situation, how it is better than alternatives, how previous attempts to address the issue failed and now is the time to fix it, etc. Instead, he spoke about…his son (again).  And of what relevance is the story about his going to a fast food joint and eating crushed cookies? Yes, the issue of inclusion and contribution is relevant and important and illustrations are helpful in promoting greater understanding, but can we get beyond heart-warming school musical stories and back to the business of making laws to improve the country, and in this case, help the disabled through amendments to our social benefits and taxation laws? Lake has previously discussed his son’s library skills in a news report available here:

https://www.ctvnews.ca/canada/canadians-with-autism-have-untapped-skills-when-it-comes-to-employment-1.2115018

 

[Andrew Kavchak]

Hi Folks,

Further to my last message, I can confirm that the letter-to-the-editor that I forwarded to the Ottawa Citizen was published today, along with another letter from a psychologist (both letters, and my comment on the psychologist’s letter, are below).

Today's letters: Election season!

“Yes, treatment of autism is important
Re: We should reimagine how we think about autism, May 22

As a parent of a teenager who is severely affected by autism, non-verbal (unable to speak) and requires help with every task throughout the day, including dressing, eating, toileting and turning on the DVD player, I take exception to the author’s portrayal of autism and suggestion that it should not be treated.

While there is no question that “high-functioning” individuals do not require much, if any, assistance (thank you for the reference to Einstein and Mozart), the author makes an error in assuming that by having spent some time with “Aspergians” one can extrapolate and assign the characteristics of the high-functioning across the entire spectrum and claim that people with “autism” are fine and don’t need treatment.

However, the low-functioning at the other end of the spectrum may greatly benefit from being taught how to brush their teeth, butter their toast and zip up their jackets. Teaching them to do these things is what the current state of autism treatment is largely about. It can be a laborious task requiring a lot of repetition. It would be nice if they could say “no thanks, I can do it myself,” but they will need to be taught how to say that first.

Andrew Kavchak, Ottawa

Autism is over-diagnosed in today’s society

As a psychologist working in the field of autism, I have seen the autism diagnosis expand from one in 10,000 to one in 56 during my lifetime without any solid evidence of its cause or proof of successful treatment.

It is particularly disturbing for those of us who are trained in the scientific approach to see children as young as one year being given a diagnosis which lasts a lifetime and which expresses itself in symptoms ranging from those described by the author to those more typical of extreme developmental delay.

For those reasons, I applaud Fan’s use of the term “atypical development,” which I would suggest is much more accurate and relevant. In today’s society where “normal” is hard to determine, I recommend we refrain from early diagnosis and wait until the child is closer to six or seven before we conclude that there is evidence of a permanent diagnosis such as autism.

June B. Pimm, PhD., author, The Autism Story, Ottawa”

Comment: One of the important themes in the discussion of autism diagnosis and treatment is the need to obtain a diagnosis (if one is warranted) as early as possible, as the “plasticity” of the brain at an earlier age provides increased likelihood of best outcomes from treatment. Presumably this is one of the reasons why so many researchers are trying to develop tests that would enable early diagnosis, and why the ABA treatment programs that exist across the country do not have age thresholds for starting the programs once a diagnosis is obtained (there are other ways of delaying the administration of treatment, including the maintenance of unconscionable waiting lists that can last for years). In Ontario, one cannot even apply to the treatment program without first obtaining a diagnosis.

Thus, the suggestion that one should wait to seek an evaluation and assessment until a child is six or seven is, in many (if not most) cases, a truly problematic concept, if for no other reason that historically the Ontario “Preschool Autism Program” (and other provincial programs) have age six (or close to six) cut-offs.  In other words, the author suggests to delay (and effectively deny) as long as possible, miss what may very well be the best window of opportunity for the promotion of the child’s development, and then miss the boat entirely on getting some government assistance to either provide or help pay for treatment.

The author’s bio on the Carleton University website indicates that she works in the psychology team at the Ottawa public school board and “the influence of Piaget caused her to adopt the developmental model which she considers the best approach to the understanding the enigma of Autism today”.  Sounds helpful.

[Andrew Kavchak]

Hi Folks,

A couple of things from the news were noteworthy lately (although not necessarily for celebration purposes).

First, a media story circulated about some “naturopaths” who advertised that using a procedure called “CEASE Therapy” (complete elimination of autism spectrum expression) they could “completely eliminate” autism.

http://www.cbc.ca/news/canada/british-columbia/b-c-naturopaths-offer-complete-elimination-of-autism-through-homeopathy-1.4675461

Apparently, a complaint was filled with “The College of Naturopathic Physicians of B.C.” about three such B.C. registered naturopaths. Apparently the “College” bylaws prohibit false and misleading advertising.  It also seems that similar complaints were filled in Ontario, Manitoba, Saskatchewan and Alberta.

What the article does not address is what are the potential penalties if the “naturopath” is found by the College to be in violation of the bylaws.  However, the complaints page at the College website makes it clear that there are several things that can happen, including requirement to participate in formal disciplinary proceedings (which presumably could result in either conditions being imposed on the individual’s practice, or the temporary suspension or permanent withdrawal of a license to practice). The College website indicates that the “inquiry committee” does not have jurisdiction to order a monetary award.

Well, I’m glad that someone has filled the complaint, and that in numerous provinces these “naturopaths” are being investigated.  But they are being investigated by what appears to be a self-regulating industry with few teeth to bite with.  I wonder what would happen if a complaint (or many complaints) were instead filed with the Competition Bureau regarding “false or misleading representations”?

http://www.competitionbureau.gc.ca/eic/site/cb-bc.nsf/eng/00513.html

The Competition Act’s sections relating to false and misleading representations contain both criminal and civil provisions.  The criminal provision (section 52) “prohibits knowingly or recklessly making, or permitting the making of, a representation to the public, in any form whatever, that is false or misleading in a material respect.”  And what would the penalty be?  Any person who contravenes section 52 is guilty of an offence and liable to a fine of up to $200,000 and/or imprisonment up to one year on summary conviction, or to fines in the discretion of the court and/or imprisonment up to 14 years upon indictment.

Paragraph 74.01(1)(a) of the Competition Act is a civil provision. It prohibits the making, or the permitting of the making, of a representation to the public, in any form whatever, that is false or misleading in a material respect. And what would the penalty be? If a court determines that a person has engaged in conduct contrary to paragraph 74.01(1)(a), it may order the person not to engage in such conduct, to publish a corrective notice, to pay an administrative monetary penalty and/or to pay restitution to purchasers. When the court orders the payment of administrative monetary penalties, on first occurrence, individuals are subject to penalties of up to $750,000 and corporations, to penalties of up to $10,000,000. For subsequent orders, the penalties increase to a maximum of $1,000,000 in the case of an individual and $15,000,000 in the case of a corporation. The court also has the power to order interim injunctions to freeze assets in certain cases.

Yeah….I really wonder what the future of these purveyors of “complete elimination” autism therapy would be if the Competition Bureau would receive a complaint and conduct an investigation and then pursue the matter in court.

Another media story on a different matter involved an opinion piece recently published in the Ottawa Citizen that was written by someone who is apparently pursuing a “medical sciences” degree.

Fan: We should reimagine how we think about autism

The article’s title proposes that we should reimagine how we think about autism.  The author claims to have spent some time with people with Asperger’s, and then suggests that society should cherish their creativity and stop thinking about autism as something that needs to be treated.  This kind of “everything’s fine, stop fretting about treatment” philosophy and approach is consistent with the speeches I have heard from “self-advocates” and super high functioning people “with autism” speaking at the annual “Autism on the Hill” rallies, etc.  In fact, they rarely talk about treatment and instead plead for support and respect, etc.  The high functioning folks may not need treatment (and I don’t think I ever met anyone who insisted that high functioning be subjected to any treatment program similar to what is recommended for the low functioning folks).  I wrote a letter-to-the-editor suggesting that while high functioning people with Asperger’s may not need much, if any, treatment, those at the other end of the spectrum who are low functioning do need treatment.  Treatment includes teaching kids how to do things like getting dressed, buttering toast, brushing teeth, and turning on the DVD player.  I would love it if my son would say to me “No thanks dad, I can do it myself”, but he needs to be taught how to say that first.

In the meantime, we have “awareness campaigns” that seem to sometimes mislead people. On May 1 I posted a message about how Autism Canada posted a message on their social media platforms relating to the tragedy in Toronto and suggested that most people with autism “…just have challenges reading social signals”.  Just? This misleading portrayal of the nature of autism by Autism Canada is consistent with the message in the article by the medical sciences student.  If the only challenge that people with autism face is “reading social signals”, then perhaps they are suggesting that there are no low functioning individuals, or for some reason (perhaps inconvenience?), they don’t count.

 

 

 

[Andrew Kavchak]

Hi Folks,

Yesterday (Friday, May 11, 2018) in the Senate one Senator made a speech as part of a resumption of debate on the inquiry of the Honourable Senator Wallin, calling the attention of the Senate to the Silver Alert concept, which mirrors the successful AMBER Alert system, and which is focused on helping the more than 700,000 Canadians living with dementia or Alzheimer’s and their families and caregivers and is aimed at helping to locate missing cognitively impaired adults.

As part of her speech, the Honourable Kim Pate stated the following:

“B.C. has an active citizen-led Silver Alert program where private citizens provide a valuable public alerting system. The group formed because:

Despite many people with dementia and autism dying on the streets of Metro Vancouver and elsewhere in BC, the government ha[d] chosen not to implement this service. So, [they] decided to do it [them]selves.

Honourable senators, health and mental health challenges affect families throughout the country. In fact, there is an e-petition on the House of Commons’ website, sponsored by Liberal member of Parliament Bob Bratina and initiated by Ontario Liberal MPP Sophia Aggelonitis, which is currently open for signatures for all citizens of Canada to call upon the government to develop a national Silver Alert strategy for all Canadian provinces and territories.”

To my knowledge, this is the first time that I see a reference in a Parliamentary debate to people with autism dying on the streets. She refers to another organization and it is not clear if that reference is a direct quote of some sort of official history or mandate document relating to the “Silver Alert program” in B.C.

[Andrew Kavchak]

Hi Folks,

Yesterday the word “autism” was mentioned by several MPs in the House of Commons.  There was some sort of debate over immigration policy and the treatment of potential immigrants with disabilities.  Someone gave some examples that included a reference to autism, and then some other comments were made about autism.  Autism was not the primary (or secondary) issue in the “debate”, but some of the references were interesting (and revealing).

(From Hansard for Thursday, May 10, 2018:)

For example, one Conservative MP stated the following:

<b>Hon. Michelle Rempel: </b>

“Mr. Speaker, I certainly support ensuring that people with disabilities, especially such people autism, are included. One of my colleagues has an autistic son and he does a lot of very good work on behalf of the community.  I would remind my colleague that just over a year ago she voted against an opposition motion to reverse the Prime Minister‘s cold-hearted decision to reject the Canadian Autism Partnership project. I find it very rich that she would stand here and make comments about cost-benefit after her government has racked up a lot of debt and refuses to fund the Canadian Autism Partnership project.”

According to this MP, the Liberals were “cold-hearted” to reject the CAP project.  And when during the nine years (2006-2015) of Conservative government were they ever “warm-hearted” towards autism?  From my perspective, the only thing that they did during that period which stands out as worthwhile is the creation of the RDSP which applies to all persons with disabilities.

However, now that the Liberals voted against something which the Tories proposed when in opposition (but did not implement when they were in power), the Conservative MP suggests that the Liberals have no credibility discussing “cost-benefit” analysis.   Perhaps the Tory MP could improve her own credibility if she would stop talking garbage.

Then this from a Liberal MP:

<b>Mrs. Celina Caesar-Chavannes: </b>

“Mr. Speaker, because my hon. colleague brought up my voting record on autism, I will say that I voted against that because there was money going to a particular organization. I would remind her that in budget 2018 we provided over $20 million to various autism agencies that we have continued to advocate for. My background in neurological research lends itself to ensuring that we support individuals and families with autism.  I will go back to my previous question. I know it is not just about cost and benefit when we are talking about people with disabilities, but does the member not think that there is a benefit, and not just a cost, to having individuals with disabilities come to Canada? Although we could continue to work with provinces and territories, it is still a granted and compassionate first step to ensure that individuals have an opportunity to come here and contribute to our economy.”

To my knowledge, this is actually the first time that a Liberal explained why they voted against Mike Lake’s motion for the government to fund his CAP project.  There were debates last year, but my recollection is that the Liberals did not address or speak (or even mention) the CAP and instead merely talked about other things the government is doing “in support of autism”.  So what was this MP’s reason to vote against CAP?  “…because there was money going to a particular organization.”  What does that mean?  Was she against the concept of one (and only one) organization getting money to do something? Or was there something nefarious and objectionable about the “particular” organization in question?

Then she mentions that the government provided millions in the last budget to other organizations that “…we have continued to advocate for.”  What? The government is now in the autism advocacy business and advocates on behalf of specific autism organizations that it funds? To whom would the government be doing the advocating?  Itself?  Now we are entering the world of Alice in Wonderland.  The MP who said that has a degree in biology and an MBA in “healthcare management”, and made reference to her background in “neurological research”. For some reason, this “lends itself” to some lip service about supporting individuals and families with autism.  By her logic, if she had some background in something completely unrelated to “neurological research” her background might not “lend itself” to any such support.

And finally the Conservative MP replies with more reference to autism:

<b>Hon. Michelle Rempel: </b>

“Mr. Speaker, the logical fallacy in my colleague’s argument is that she is making an assertion I did not make. I do believe Canada’s entire immigration system should think about compassion and how we can meet the needs of Canada’s economy through immigration. Certainly, we should have initiatives that support and ensure the fulsome participation in every aspect of Canada for people who have disabilities. We should not be looking at programming or policy that is going to put barriers in place for people who already have barriers every day.  Again, the member opposite voted against a motion that I think was for $2.3 million. I am looking to my colleague from Edmonton, who does a lot of work on autism. The member opposite stands and takes credit for this, when it is actually my colleague from Edmonton who has done years of work. He probably went to a million community meetings, and he put pressure on the government to get some acknowledgement for this in the massive bazillion-dollar deficit budget. I do not think there is a single Liberal who can stand in the House and take any credit for the work on autism participation in the Canadian economy without looking across the aisle and giving credit to my colleague from Edmonton.”

Wow.  This one is a doozy.  First she suggests that we should have initiatives that support and ensure the “fulsome” participation in every aspect of Canada for people who have disabilities.   That sounds like an honourable objective. But setting aside the issue of disabled immigrants for a second, what did the Conservatives do to ensure Canadians with autism develop to their full potential so they could participate in a “fulsome” manner in every aspect of Canada? Besides funding a “business plan” for a new bureaucracy the funding of which was to be addressed after the next election?  The reference to not putting up more barriers might resonate if their behavior in government involved responding to our pleas with something other than silence.   She refers to $2.3 million.  What was that?  The CAP project requested $19 million.  How soon they forget.  And then there is the reference to taking “credit for this”…for what? Honestly, what is there to take credit for?  And then there is a reference to the MP from Edmonton (Mike Lake I presume) who should be given credit for his “years of work” (which accomplished what exactly?), and for attending a “million community meetings” (at which he explained a million times that autism and access to treatment is a provincial jurisdiction item?), and for putting “pressure on the government to get some acknowledgement for this …[in the budget]”.  OK, so now the fact that there is $20 million in the budget allocated to some autism website and awareness campaigns, this is all thanks to Mike Lake and he should get credit for this.  And from the last sentence we see that somehow Mike Lake has managed to position himself in such a way that nothing can be said, and nothing can be done, without him somehow being the subject of discussion about the allocation of credit for his “years of work” and “millions” (!) of community meetings.

The whole exchange would be funny if it was not so tragic.

[Andrew Kavchak]

Hi Folks,

One of the big problems affecting our community in terms of understanding what is being offered and what government is actually doing is the issue of secrecy and the lack of transparency.  For those who wish to understand why their child is not getting what their child needs, or who want to get an accurate understanding of “the big picture” with respect to how the government(s) is spending its scarce (yet allocated) resources, this is often an impossible task due to the lack of transparency and the corresponding culture of (in)accountability.

The CBC just reported that a review of autism services in Nova Scotia recently found that there are “gaps” (yeah, no kidding), and made “recommendations”, yet, the report is being kept confidential and not being released to the public.

Review of N.S. autism services kept private despite acknowledgement of gaps

One has to wonder….why would the government consider an evaluation of its autism services something that needs to be kept internal and not released to the public?  Is there some national security issue at stake?  I sort of doubt it.  Thank God for the “Access to Information Acts”….But how many people in the community have the time and energy, etc. to pursue an access to information request?  For 25 years I was a federal civil servant and one of the tasks which I hated the most was dealing with “Access to Information” (and “Privacy Act”) requests.  One would typically be asked to contribute to the collecting of all the material (documents, emails, memos, reports, etc.) relevant to the request, and then to review all of the assembled stuff to determine whether anything should be blacked out.  In most situations, this resulted in endless disputes arising from the differences of opinions between officers (like me), senior officers, managers, and the staff of the Access to Info office, as well as legal counsel from the Department of (in)Justice, etc (not to mention the senior executives and their office staff including “executive assistants”, “advisors”, and “special deputy associate assistant whatever”, etc.). While some people in the system (like me) interpreted the Act and the exemptions in such a way as to release as much as possible, others in the system interpreted the process as allowing them to withhold as much as possible.  We would discuss (argue) and have meetings, etc. and eventually someone at the top would make a decision about whether something should or should not be released. It was often a very frustrating experience as I often looked at this as being a key element of democracy and citizen rights (and taxpayer rights).

Based on my experience, one of the common reasons for not releasing some information was embarrassment.  Of course, the managers would be able to refer to one paragraph or subsection of the Act to provide the formal “legal” excuse for not releasing something, but generally, if there was nothing to be embarrassed about, there was a greater likelihood of release.

So what is the embarrassing thing(s) in Nova Scotia’s report?  It is absolutely amazing that the report would contain recommendations that the bureaucracy says they are working on, but are not at liberty to tell the public.

So how can one possibly effectively lobby for better access to autism treatment or any other related program or services when the public is kept in the dark about the actual state of program management?  Of course every parent on the ground knows what they are getting and not getting, but when the government says they are putting more money in the system how do we know whether it is really going into the system and trickling down to the street level?  Well, we don’t.  But we can make assumptions based on experience.

Around 2005 I remember organizing a demonstration in front of Ontario Premier Dalton McGuinty’s (oops, I mean McGuilty) constituency office.  His government was elected in late 2003 and announced a review of autism services which was followed by an announcement of many millions of more dollars being allocated to autism programming.  Well, the government tells the public when they allocate something, but they don’t tell the public when they don’t actually spend the money and instead divert it to other unrelated programs.  One of the opposition MPs (Shelley Martel) came from Toronto to our rally and gave a speech where she held up several documents that she obtained under the provincial Access to Info legislation which revealed that much of the money supposedly spent on autism programs was diverted to highway repair or something like that.  It is interesting to note that the Auditor General of Ontario issued a report around 2006 stating there were unspent millions in the Preschool Autism Program, and over 1,000 kids on the waiting list (makes sense, right?).  Well, several years later there was a follow up review and report by the Auditor General which revealed that not even a dent was made in the waiting list and there were still 1,000 kids on the list.

A few years ago the Ontario Liberals proposed to reduce the age cut off for treatment from six years of age to five.  I wrote to my MPP to tell him what I thought of that disgraceful proposal.  He called me back and said that the government reviewed the data and evidence it collected since starting its program in 2000 and that it had to “go with the evidence”.  Well, that’s another load of baloney. Of course, the evidence he refers to is not public and what is also not public is the evidence that contradicts the government’s “evidence”, etc.  The local Ontario Autism Coalition organized a series of demonstrations that got a lot of media attention and then the government announced a change in policy.  Suddenly, the proposal for the age five cut off was dropped, millions more dollars became available, and the age limit for autism services was raised to 18.  So I felt like contacting my MPP to ask about the latest “evidence” which contradicted the earlier “evidence”…. sadly, there is still a waiting list, etc.

So now we have a provincial election, and guess what?  A new announcement of more money for autism!  But who believes it?

https://news.ontario.ca/opo/en/2018/05/expanding-autism-services-for-ontario-kids.html

The same thing recently happened in Quebec.  For years the government carried on a “review” and then announced an “improvement”.  Yet, the most recent news is that fed up parents are launching a Human Rights Tribunal case.

We need more transparency and the releasing to the autism community and the public of more information from the government(s) about their programs and allocation and management of resources , etc.  And those involved in projects with the government have to contribute to this effort to be responsible.  As you may recall, for two years the Tories funding a “working group” to create a business plan for the “Canadian Autism Partnership”.  Well, how was the money allocated to developing that “business plan” spent?  Who got how much?  What is their interest in pursuing the project, etc. ?  After the Business Plan was made public, the Medicare for Autism Now folks issued a public letter calling for the financial details to be released.  As far as I know, they received no acknowledgement or response.  This may be evidence of some “communication impairment” with which we are all so familiar.

Similarly, Autism Canada announced last year that they were withdrawing from CASDA and their support for the CAP project for a number of reasons, of which “lack of financial disclosure” was the first on the list.

http://www.marketwired.com/press-release/autism-canada-rejects-canadian-autism-partnership-project-2224019.htm

Our community should be getting a lot more information than we have been getting.  We need “Transparency for Autism Now!”

[Author]

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