[Andrew Kavchak]

Hi Folks,

Well, there was a “debate” in the House of Commons yesterday about Mike Lake’s motion for the government to suppor the “Canadian Autism Partnership” (CAP) project.  From my reading and scanning the transcript of the debate, it seems to have started at 10:30 a.m. and finished around 2:00 p.m or so. Then it picked up again around 3:00 p.m. and finished around   The “Hansard” transcript of the debates on Thursday, May 18, 2017, are available at:

http://www.ourcommons.ca/DocumentViewer/en/house/latest/hansard

I did a search for a few terms.

“autism” was mentioned 578 times.

“medicare” was mentioned once (yes, “1”), when one MP made a reference to the “Medicare for Autism Now” organization.

“therapy” was mentioned a whopping 4 times (twice when the name of a specific location, the “Chris Rose Therapy Centre” in some MPs riding was mentioned).

“Auton” (as in the 2004 case that went to the Supreme Court of Canada) was not mentioned at all.

“access to treatment” was not mentioned (not even once).

“low functioning” or “low functioning autism” was not mentioned.

“high functioning” was mentioned twice.

“Senate report” (i.e., the 2007 “Pay Now or Pay Later” report) was mentioned once.

“Applied Behaviour Analysis” was mentioned twice, and the acronym “ABA” was mentioned twice.

“Intensive Behaviour Intervention” was mentioned 6 times, and the acronym “IBI” was mentioned 4 times.

“National Autism Strategy” is mentioned 4 times.

“Munson” (a reference to our historic champion in the Senate) was mentioned twice (by one MP).

“FEAT” was not mentioned.

“funding agreement” or “funding accord” were not mentioned. “health accord” was mentioned once.

As I read and scan (it is painful to read) through the text, it seems like a good thing that autism is on the radar screen, but there seems to be a lot of confusion about what the issues are and what needs to be done.  Some talk and discussion may be better than none, but there can be a lot of smoke and mirrors too. I hope something positive eventually evolves from this, but I’m not holding my breath.  As the word stats above demonstrate, key issues were not addressed in any depth and the discussion included a lot of time spent on MPs thanking and congratulating each other, and numerous things other than what I would consider priorities.

 

 

[Andrew Kavchak]

Hi Folks,

Three developments I would like to bring to the attention of those who may be interested.

First, here’s something interesting from the House of Commons Hansard of May 16, 2017.  The Parliamentary website has now allowed for “e-petitions” for a while, and it may be worthwhile to put it to use (as demonstrated immediately below).

“Petitions

Autism

<b>Ms. Julie Dzerowicz (Davenport, Lib.): </b>

Mr. Speaker, it is a privilege for me to rise in the House today to present an e-petition that was initiated by Ken Robertson, an urban aboriginal autism activist and a constituent of mine in my riding of Davenport.

 

This e-petition calls on the federal government to gather data on urban aboriginal children with autism and the length of the wait list for support for off-reserve children. In addition, it calls for the federal government to work with the provinces, territories, and stakeholders to develop a pan-Canadian strategy for autism spectrum disorder, including awareness and education campaigns; child, adolescent, and adult intervention; and innovative funding arrangements for financing therapy, surveillance, respite care, community initiatives, and basic research.

I look forward to our government’s response.

I would like to thank the almost 700 Canadians for supporting this important initiative.”

Second, it appears from some of the flurry of postings that today in the House of Commons there will be an “opposition day”  (presumably where the opposition party gets to set the agenda), and what has the Conservative Party caucus decided to do?  It has decided to debate a motion about autism.  But not the development of a National Autism Strategy that would see the development of a funding formula to finally see autism treatment covered by Medicare (our national public health insurance program). Nope. Instead, it is about the pet project of Mike Lake and CASDA, etc. namely, the “Canadian Autism Partnership (CAP)” project, about which I have previously written.  I believe the debate is to take place today and the vote next week or so.  The text of the motion is below.  I believe the motion’s sponsor is Mike Lake.

The reference to the 1 in 68 prevalence rate is interesting.

When I first met with Mike Lake (with Laurel Gibbons) immediately following his election in 2006, we referred to the prevalence rate, which at that time was considered by the CDC to be higher than what is is now (I think it was “1 in 150” or so) .  His immediate and unequivocal response was “I don’t believe that!”.  In the period immediately aftwards there was a motion sponsored by Liberal Andy Scott and a private members bill from Liberal Shawn Murphy….both of which contained “whereas” type clauses at the beginning that described the situation and context.  During the initial discussions over the first draft of the Bill and the effort to generate broad support, |I was told by a person involved (representing an autism organization) that when they met with Mike Lake he insisted on “watering down” bill, including the “whereas clauses” and the one which contained the prevalence rate (which was more than 1 in 68 at the time).  Imagine that….when the Conservatives are in power, the CDC prevalence rate are not to be believed or mentioned. But when the Liberals are in power, the (ever-worsening) prevalence rate are to be mentioned up front.  It is nice that he seems to finally be coming around to recognizing the CDC’s prevalence rates as being somewhat credible and authoritative (given that we don’t seem to have any corresponding monitoring system in our public policy bureaucracy).  Nonetheless, I would not be surprised if his Conservative Party ever returns to power, that he might suffer from amnesia or something.

Full text of the motion:
“May 5, 2017 — Mr. Lake (Edmonton—Wetaskiwin) — That, given that: (a) Autism Spectrum Disorder (“autism”) is widely considered the fastest growing neurological disorder in Canada, impacting an estimated 1 in 68 children; (b) it is a lifelong diagnosis that manifests itself in a wide-range of symptoms, including difficulty communicating, social impairments, and restricted and repetitive behaviour; (c) individuals with autism and their families face unique challenges over their lifespan, often leading to families in crisis situations; and (d) Autism Spectrum Disorder is not just a health issue—it has overarching implications for Canadian society as a whole; accordingly, the House call on the Government to grant the $19 million over 5 years requested by the Canadian Autism Partnership working group, Self-Advocates advisory group, and the Canadian Autism Spectrum Disorders Alliance, in order to establish a Canadian Autism Partnership that would support families and address key issues such as information sharing and research, early detection, diagnosis and treatment.”

Third, and finally, in constrast to Canadians submitting petitions and getting non-binding motions debated about the creation of a new autism bureaucracy, the “U.S. News and World Report” is reporting that Alabama lawmakers unanimously approved a bill requiring insurers to provide autism treatment coverage. Yes, the vote was unanimous.  When have we ever seen anything like that in a Canadian legislature (provincial or federal) relating to Medicare coverage for autism treatment?  The only Canadian example of related autism unanimity that I can think of is the November 2004 Supreme Court of Canada decision in which the entire bench of judges issued a unanimous decision (written by the Chief Justice), rejecting the B.C. Court of Appeal’s decision in the “Auton” case involving the attempt to get Medicare coverage for autism treatment.

Way to go Alabama!  I wonder if Mike Lake or any of his cohorts will refer to this Alabama legislative development in their “debate”.

https://www.usnews.com/news/best-states/alabama/articles/2017-05-18/lawmakers-unanimously-approve-autism-coverage-mandate

Cheers,

Andrew Kavchak

Ottawa

 

 

[Andrew Kavchak]

Hi Folks,

Well, some more interesting developments on the “jurisdiction” front today…

OK, we all know that Canada is a geographically large country that operates as a “federal” system, meaning that there are different levels of governments with different powers in various matters that governments are typically responsible for. Section 91 of the constitution outlines the federal government responsibilities, and section 92 outlines the provincial areas of responsibilities.  Since 1867 the feds and the provinces have often had disagreements about interpretation, particularly when new (previously unforeseen) technical developments arise…like broadcasting. Indeed, the history of Canadian politics can often be summarized in a survey of historica court cases on the division of powers.

Now, we also know that throughout our country’s history there have been times when the governments have worked out deals that were more convenient (e.g., “opting out” of new federal programs like Quebec’s QPP instead of the CPP in the rest of the country, or Quebec’s input on immigration, etc.). In Canada, the feds collect income tax for both the federal and provincial governments (except in Quebec). When it comes to healthcare, the feds set the legal framework with the Canada Health Act, and provide financial transfer payments to the provinces. However, it is the provinces that deliver healthcare.  This has not prevented the federal and provincial governments from negotiating “accords” where federal funds are transfered to the provinces with strings attached….i.e., the funds are to be spent on specific healthcare procedures, or “mental health”, or “home care”, etc.

So, when it comes to autism, the federal Conservative Party was in power from 2006 to 2015 and throughout that whole time, Mike Lake and his cohorts kept telling us that the problem of lack of provincial Medicare coverage for autism treatment is entirely a provincial jurisdiction matter and not one that the feds can act upoon.  I remember during one of the elections…2006 or 2008, Harper was on a call-in radio show in Vancouver when a mother called in and asked about autism treatment. Harper summarily dismissed her with a curt “that’s provincial”.  However, during the campaign one of the Conservative’s policy platforms was the development and implementation of a “National Cancer Strategy”.  So I wrote a letter to the National Post that was published in which I pointed out that kids don’t get to pick their illness.

My point here is this….the Tories, especially Mike Lake, conveniently used “jurisdication” to avoid getting involved and doing anything that would help our kids get access to treatment under Medicare. However, when the Tories really want something they pursue the matter, constitution be damned.  One case in point just came up in the media a few minutes ago…

http://www.brandonsun.com/national/breaking-news/quebecs-top-court-rules-national-securities-regulator-is-unconstitutional-421892693.html?thx=y

For those of you who did not follow this fiasco, when the Tories were in power, they felt that Canada should have a “national securities regulator” (i.e., that some federal body should be able to regulate the stock markets).  Unfortunately, the constitution and the historic record since confederation has been that it is a provincial jurisdiction matter (property and civil rights is in section 92). The Harper Tories decided to plough ahead and asked the Supreme Court of Canada for a decision (yes, another one….) and got the predictable answer: it’s provincial.  Instead of dropping the matter, they tabled a Bill to create a national securities regulator and in 2015 the provincial government of Quebec referred the matter to the courts (again).  And today the “top court” of Quebec said something that is truly earthshaking: what the Tories tried to do is unconstitutional because “it’s provincial”.

The point I’m trying to make is that the Tories are remarkable hypocrites when they use “jurisdiction” as an excuse to not even try to help kids with autism. All we are asking is that they convene a meeting with the provinces, put some money on the table, and negotiate the inclusion of autism treatment in Medicare pursuant to some national standards of service delivery and quality.  No legislative amendment would even be necessary if there was politicial will and cooperation.  They have repeatedly done this kind of thing with healthcare and many other issues.  But when they want something like a national stock exchange regulator to be created, they will even go so far as to table unconstitutional Bills in Parliament and try to shove them down the throats of the provinces that have repeatedly expressed opposition. Why is it that in those cases Mike Lake does not issue press releases saying that we have to respect the constitution and the division of powers and jurisdiction, etc.? (similar to the one he did when he voted against Shawn Murphy’s Private Members’ Bill to create a National Autism Strategy back in 2007?)  You know why…autism is not as attractive or politically seductive as the power to regulate an imaginary federal stock exchange.

 

[Andrew Kavchak]

Hi Folks,

Just noticed something….something strange…..

The CASDA (autism alliance) organization lists all their members on their website (http://www.casda.ca/our-members/#ON).

When CASDA was initially formed, I was invited to join, which I did. I subsequently found it a little embarrassing when I looked at the list of members because all of the initial members were organizations, and it seemed like my name was that of the only individual. I subsequently became somewhat disillusioned with the organization and asked them to remove my name from their membership list.

Every once in a while I take a look at the membership list and over the years it has grown considerably, including names of individuals who are active in the autism community. For a long time the historically national autism charitable organization (the Autism Society of Canada, or subsequently “Autism Canada”) was a member of CASDA and appeared prominently on their membership list. The list is organized by province, and because Autism Canada’s headquarters are in Ottawa, the organization was listed on the membership list under the “Ontario” heading.

However, the last few times that I checked the list, I can’t find any reference to “Autism Canada” on the CASDA membership list.  I may be missing it, and if so, I would be happy if someone would confirm to me where Autism Canada is located on the lengthy list of members of CASDA.  Perhaps this omission is an oversight (either of mine – my eyes are getting worse with age, or of the webmaster – who may potentially also have failing eyes and accidentally hit the “delete” button).

If Autism Canada is no longer a member of CASDA, then it seems to me that there is a “news” item here for the community.  Why would the historic national autism organization (Autism Canada) no longer be a member of a national “alliance” type of organization of which it was a founding member? Was there a split? Was there a difference of opinion regarding substance? Or process? A different set of priorities?  Was there are conflict that was beyond repair?  What’s going on?  I checked their respective websites for a news release or statement on the issue and could not find anything.

Houston, do we have a transparency problem?

In any event, I remember the head of CASDA writing in her “rebuttal” to my op-ed (about that CAP project thing) that there was a need for “unity” in the autism community, and her implying that I was not much of a team player because I criticized a project that CASDA supported.  What is she (or whoever may speak for CASDA now) going to say now about Autism Canada’s apparent (I don’t know if this has been confirmed anywhere) withdrawal from CASDA (if it has in fact withdrawn from CASDA)?  I’m really curious.  All of these organizations claim to speak for the autism community and to represent us.  Can you believe this?

[Andrew Kavchak]

Hi Folks,

Well, this is interesting.  An article on the “iPolitics” website reported yesterday that apparently federal Health Minister Philpott has been “bombarded” with over 3,000 tweets in the past few months relating to autism.

And what are the tweets about?  More funding…..but not as part of a fed-prov “health accord” to ensure that Canadians can access autism treatment through Medicare. No, instead, it is part of a campaign spear-headed by Mike Lake on some sort of “Global Citizen” petition website in which people (from any country) are asked to tweet the Canadian Health Minister to support the “Canadian Autism Partnership (CAP) Project”.

The article can be accessed here:  http://ipolitics.ca/2017/04/21/twitter-activists-bombard-philpott-over-autism-funding/

Is it not strange that so many people would be supportive of creating another bureaucracy rather than actually doing something that would directly help with the autism discrimination in Medicare (which is a crisis situation for thousands of families across Canada)?  I looked at that webpage a while ago and it listed the country of origin of the tweets in question….most were not even from Canada.  If the autism community is going to solicit the global community to write to the federal Health Minister, is there not something(s) more meaningful and important to ask the Minister for than a CAP bureaucracy?

In the most recent budget the federal government did not allocate any funds to support the creation of this proposed CAP bureaucracy. I applaud the move (or “non-move”) as it is obvious to me what the autism public policy “issues” are (and have been for a long time) and it strikes me as a needless diversion to create a new bureaucracy to engage in such “issue-identification” exercises.

However, now that the federal budget was tabled and the CAP thing was ignored, it would be appropriate for the autism community and its leadership to move on (and back) to basics….lobbying for a National Autism Strategy that would involve the negotiation of a fed-prov funding arrangement to ensure Medicare coverage for autism treatment from coast-to-coast.

Instead, the Canadian Autism Alliance (“CASDA”) organization continues to promote this CAP project of theirs which their leadership (and Mike Lake) are so fond of.  Given that the CASDA organization claims to be an “alliance”, it is inconceivable to me that so many organizations that are listed as members on their website would be as preoccupied as the CASDA leadership appears to be with this CAP project at this time,  and would not prefer to move on to more urgent priorities.  Although the Chair of CASDA recently criticized my op-ed newspaper article that was critical of this CAP project, and suggested that “unity” across the community was needed (and anyone who did not support their CAP project was evidently not a “team player”), I suspect that some fissures are probably developing at CASDA itself among its members and between some members and the CASDA leadership.  Time will tell if any of these probable fissures will become public.

For the record, up to now I have resisted the global obsession with “social media” and don’t tweet or Facebook or Instagram (although I have posted two autism videos on YouTube). Instead, for years I have posted on this discussion board, and am greatly appreciative of the opportunity and privilege that the FEAT BC organization has made available to us to share relevant information and thoughts.

[Andrew Kavchak]

He said it!  The Prime Minister actually said the word “autism” (once)!

Rona Ambrose, the leader of the Opposition, started off question period yesterday (April 5, 2017), in the House of Commons with questions about foregin affairs, national defence, and taxation. Before the speaker gave the floor to the NDP, she managed to get a question in that mentions autism (although she muddled the facts a bit….I was at the rally but would prefer that money be spent on helping kids access treatment rather than creating a  CAP bureaucracy).

<b>Hon. Rona Ambrose (Leader of the Opposition, CPC): </b>

Mr. Speaker, today on the Hill there are hundreds of people helping to recognize World Autism Day. They are calling on the Prime Minister to provide less than $4 million a year to continue the good work of the Canadian Autism Partnership Project, money that was missing in the budget. That is almost equivalent to the bonus hike the CEO of Bombardier gave himself for one year.

What kind of message does the Prime Minister think this sends to parents of kids with autism when the Prime Minister can find money for bonuses for executives from Bombardier but he cannot find money for families with autism?

<b>Right Hon. Justin Trudeau (Prime Minister, Lib.): </b>

Mr. Speaker, I recognize the passion the member opposite has for this issue and recognize all members in the House who have stood up strongly in talking about autism and celebrating the advancements that have been made and indeed highlighting the work that we continue to do.

On Bombardier, I do need to point out that this was a loan that we were happy to make to invest in specific projects that are going to create good jobs for Canadians, that are going to secure the long-term future of the aerospace industry in this country, which leads to economic growth, innovation, and benefits for communities and the middle-class workers who live in them right across the country.

[Andrew Kavchak]

Hi Folks,

Well, at this time of the year there are usually a few statements read in Parliament relating to “World Autism Awareness Day” (April 2 every year). This year was no exception.  It is clear that the speeches given in the Senate are more interesting and informative.  Regrettably, the statements in the House of Commons are a little more on the “light” side of things. As usual, Mike Lake, the MP from Edmonton, talks about his son and how great he is. We all get that and we all love our children too. Unfortunately, we are not all legislators. In his capacity as an M.P. with a seat in the House of Commons, it is unfortunate that he never uses this opportunity to talk about the needs of the community and the public policy gaps, what can be done by governments, what should be done, what he’s doing, etc. Instead, it is always reassurance about his son being great, etc.   I kind of get the impression that if his son were not in the picture, Mike Lake would have little, if anything, to say about autism public policy, etc.

Cheers,

Andrew Kavchak, Ottawa

From the House of Commons:

April 3, 2017
<h3 class=”hansardH3″ align=”center”>World Autism Awareness Day</h3>

<b>Ms. Ruby Sahota (Brampton North, Lib.): </b>

    Mr. Speaker, April 2 marked World Autism Awareness Day.

    Autism continues to be a major health crisis in Canada and across the world. Through the raising of awareness, more resources have been dedicated towards research, treatment, and diagnoses.

    However, even with the added awareness and resources toward autism, I have met many families that are struggling to access resources and help for their children with autism.

     Nina Jain, a mother of an autistic child, faced this same challenge and took it upon herself to create an online resource, which can be found at able2learn.com. It has over 30,000 pages of material and over 900 products that provide free inclusive educational material, with a special focus on autism and learning disabilities for anyone.

    I would like to commend her hard work and dedication on this important day.

April 5, 2017
<h3 class=”hansardH3″ align=”center”>World Autism Day</h3>

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

Mr. Speaker, April 2 was World Autism Awareness Day and 19 years since my son Jaden was diagnosed, at two. Jaden is not special because he has autism, nor is he special despite having autism. He is just really and truly special.

    When people are with Jaden, he does not require them to be anyone they are not. He simply loves the fact that they are with him. He does not care at all what party people are with, whether someone is the Prime Minister, a backbencher, a staff member, or even a member of the Parliamentary Press Gallery.

     He likes people and trusts them. If they do him wrong, he will probably like and trust them all over again before they have completed their next breath.

    Too often our society views such naïveté as weakness. Having had the privilege of learning from Jaden for 21 years, I would argue that the opposite is true. If we can adapt our thinking to include and embrace more of the raw honesty and vulnerability we see in people like Jaden, we will all be better off for it.

From the Senate:

April 4, 2017
<h2>World Autism Awareness Day</h2>
<b>Hon. Wanda Thomas Bernard:</b> Honourable senators, I rise today to bring awareness to autism spectrum disorder. The term “spectrum” reflects the diverse challenges and strengths possessed by each person with autism. I commend my colleague Senator Munson for his tireless work in advocating for individuals with autism spectrum disorder. I would like to underline the importance of his leadership that led to the adoption of An Act respecting World Autism Awareness Day and the landmark Senate report,<i> Pay Now or Pay Later: Autism Families in Crisis.</i>

Thank you, Senator Munson, for your vital work.

I would also like to highlight the work of the charitable organization QuickStart – Early Intervention for Autism. Suzanne Jacobson, Founder and President of QuickStart, raises awareness and initiates programs to cut wait times, build capacity and promote improvements in early identification and intervention.

Yet despite all the work that has been done, there is still much stigma and silence around autism. Consequently, this often leads to lack of diagnosis of autism spectrum disorder in the early years, which is especially significant for families who live on the margins, families who live in neighbourhoods of deep poverty, racialized and immigrant communities. Early diagnosis and early intensive behavioural therapy or intervention services are crucial in order to assist children with autism in reaching their full potential.

Of particular concern to me is the need to bring knowledge, awareness, analysis and action to African Canadians about autism spectrum disorder. Equally important is the need to create more awareness in the communities of people directly affected by autism spectrum disorder, and their advocates, about the additional burden of race and racism as well as barriers that African-Canadian children and adults with autism spectrum disorder must deal with over the course of their lifetime.

As a grandmother of two amazing boys, one who lives with autism, and his older brother who has an acquired brain injury, I am painfully aware of the multiple barriers that they face now and that they will face in the future. As a family, along with their parents, we use all of our resources to ensure they have the support and programs they need to ensure that they have a bright and promising future.

But private family resources are not enough. In the recent release of their report on the cost of raising children, Campaign 2000 noted that the cost of raising children with disabilities is much higher than average. For families, the financial burden is substantive.

We must be concerned about those children with diagnoses who have long waiting lists for inadequate public services. We ought to be concerned about those families who suffer in silence because they are not aware of the services in their area or they do not even have appropriate services in their communities.

Every child in Canada living with autism deserves to have early intervention and the level of support they need to live full, productive lives. There is an autism services crisis in Canada, and we need a national autism spectrum disorder strategy that addresses critical need for funding and policies.

Honourable colleagues, let’s not be silent but stand together for equal rights for all children and families who are dealing with autism.
<h2>World Autism Awareness Day</h2>
<b>Hon. Leo Housakos:</b> Honourable senators, did you know that in 2016, one in every 68 children is diagnosed with autism spectrum disorder? One in every 68. Compare that to one in every 150 children who received a diagnosis of autism spectrum disorder in 2002. This is astonishing increase in just 14 years. This phenomenon has a profound effect on individuals, families and our nation as a whole.

My wife Demi and I were touched first-hand by this issue the day our dear friends, Mary Gouskos and Nick Katalifos, received the diagnosis of autism for their son Emmanuel.

Through them, we have seen first-hand the challenges and struggles that families dealing with autism are facing and applaud all who have stepped up to meet these challenges.

Early diagnosis and intervention are critical, yet the medical system is unable to keep up while the rates of autism continue to soar. Parents complain of the increasingly high costs of therapies while the public system has failed to provide adequate services. Schools across Canada are bursting at the seams as they try to keep pace with the rising number of students with autism.

And it’s only going to get worse unless the federal government takes immediate steps to address the state of autism policy in Canada.

This simple yet startling reality was put front and centre 10 years ago by our own Standing Senate Committee on Social Affairs, Science and Technology in 2007, in its report <i>Pay Now or Pay Later: Autism Families in Crisis</i>. The report called for a national autism spectrum disorder strategy — even back then — at the heart of which would be a plan to broaden educational and professional training opportunities for Canadians with autism.

A good start came under former Prime Minister Stephen Harper, when the federal government allocated $11 million over four years to support training programs for autistic adults with the hope of assisting them into the workforce. Indeed, some corporations have also recognized that these individuals often possess talents and skill sets that are very valuable.

Many private organizations are attempting to fill those gaps. Take the example of Montreal’s Giant Steps School and Resources Centre for Autistic Children. The school offers a comprehensive approach, including a variety of therapies and teaching methods.

But sadly, it is the only school in Quebec dedicated exclusively to autism. So, as you can imagine, there are more children on the waiting list than there are those receiving the help they desperately need and deserve.

While Giant Steps School must be commended, without sufficient support from the federal government, they and other organizations like them are facing a daunting task. The fact remains that we are not doing enough to support its efforts and other similar programs throughout our nation.

Every child is born with the same potential to achieve greatness, but each and every one of them has the ability to do it at a different speed and in different ways.

Indeed, when society learns to harness all of our children’s strengths and leaves not a single one behind, only then will society truly maximize our combined potential as human beings.

Whether focusing on research and early intervention, family support services or job training, the time has come to develop a government-led, committed and coherent national policy on autism.

It has been a decade since our report was released, but senators haven’t forgotten the daily struggle of these Canadians — nor will we.

April 5, 2017
<h2>World Autism Day</h2>
<b>Hon. Jim Munson:</b> Honourable senators, we have all these notes and prepared speeches in front of us, but sometimes you have to speak straight from the heart.

The last three days have been an incredibly emotional journey dealing with Autism Awareness Day. We heard wonderful remarks from Senator Housakos and Senator Bernard, adding to the team of senators who are building towards getting a national autism strategy, and we are going to get it.

We have had good things come from the government, in terms of the previous government, on research and science and chairs of autism and being ready, willing and able to deal with employment for young adults with autism.

As I stand here today in front of you, 10 years after our report<i> Pay Now or Pay Later</i>, I’m glad the Scottish delegation is here, because three rows behind you is Molly MacDonald who has autism. She is here because she was on the Hill with Suzanne

Jacobsen. There were 500 people today on the Hill, all parties and everybody together thinking about a person like Molly MacDonald.

I’m also thinking of Wyatt Tuft from a school here, an 11-year- old advocate who got his school to talk about autism on his particular day. A young man came up to him, and he had coloured his hair blue to show empathy and what it means to be participating in this society.

Now let me get a little personal. When I started this journey, 10 or 11 years ago, little did I know that I, too, would find out in my family, when I was at the school and invited by my second cousin, introduced again to my two third cousins, Tristin Mercer and Kirin Mercer. Can you imagine? And little Tristin, seven years old, kept looking at me saying, “Are you my cousin? Are you really my cousin?” I said, “I’m your cousin, and I’m also your advocate and friend.” And I know we have a lot of friends inside the Senate as we push towards a national strategy.

The only thing that I will say here that is on a piece of paper — and I have about 18 pieces of paper here — is because of this week and because of this summit, it’s a movement and we’re working together and we’re going to get there. All Canadians living with autism have the right to inclusion, understanding and acceptance, respect and dignity, full citizenship, equitable opportunities and access, personal autonomy and decision making.

At the end of the day, honourable senators, it is about those who live in the autism community who have the same rights as you and I, and it is about human rights.

Thank you, honourable senators.

[Andrew Kavchak]

Hi Folks,

Well, Sunday, April 2, 2017, was “World Autism Awareness Day”. On that day the “Medicare for Autism Now” folks issued an “open letter” to Prime Minister Trudeau pointing out that his party policy convention a year ago adopted a policy to promote the inclusion of ABA treatment for autism in Medicare through a negotiation with the provinces over funding…..and what has the federal Liberal Party that is the government party done to implement the policy resolution so far?  Nothing.  Nada. Zilch.  Zippo.

Well, for the past couple of years some people behind this relatively recent “Quickstart” autism program have organized a “Autism on the Hill” rally, to mark “Autism Awareness Day”.  I went to it last year, and wrote a review which reflected my disappointment.  I also made a video on YouTube titled “Autism Awareness and Government Action”. I wanted to refer to government “inaction”, but I thought that would be too blunt…..but the message that autism awareness should be considered a means to an end, and not an end in itself, is clear in the video.

So I decided to go to this year’s rally on the hill.  I don’t know if I am going to go to these things anymore….I just find them so annoying.  For those who are interested, it seems that this year’s event was livestreamed on FB. It probably will be next year too.

It was advertised as starting at 12 noon. Well, from 12 noon until 12:15, the Dominion Carilloneur was playing the Peace Tower bells and making the usual racket. So while we are all waiting for the bells to stop making their music, what do the assembled politicians and speakers at the top of the stairs (in front of Centre Block) do? They all stand together for the mandatory and opportunistic “photo op”.

About 150 people showed up in the crowd. I was the only one with a sign. My usual sandwich board sign called for a National Autism Strategy and asked people to sign the petition. Many people came up to me and asked to sign the petition on my clipboard.

There were a number of speakers, and even more people standing at the top of the stairs. I think it was a record turnout of politicians (both M.P.s and Senators).

The MC and host of the event was a lady named Jacobsen who started this “Quickstart” program a few years ago after one or two of her grandchildren were diagnosed.  I spoke with her for a few moments before the show started and told her that I think we need to go beyond awareness and talk about the need for a National Autism Strategy (NAS). She agreed and insisted she would refer to it. Well, she started off by thanking all the people who came out and for people who submitted pictures (175) for inclusion on a banner. Then she said the usual slogans…some of which can be interpreted different ways.  “Awareness is about understanding and acceptance”.  “Awareness is not about changing the person”.  To me, the issues really are about the needs of the kids and adults (e.g.,  access to IBI/ABA treatment pronto after a diagnosis, etc.) and the public policy gaps and the discrimination in Medicare, etc.  When people talk about acceptance and not changing the person, it sounds like they are not very interested in treatment and helping a child with autism to become more functional like an average or normal child.  Then she quickly made a reference to the need for a NAS which would involve coast to coast availability of supports for people with autism. So, she did not address the public policy gaps or what needs to be done to fill them.

The first speaker was then introduced. He was a nine year old boy named Brandon, who “only recently found out he had autism”. Well, if for the first nine years of his life his parents, family, friends, teachers, etc.  did not think there was something sufficiently abnormal about him to warrant seeing a specialist, then let’s face it: this boy was probably high functioning and perhaps had Aspergers Syndrome.  Well, his speaking was flawless. He said he felt different (how can he tell?) and some stimuli make him feel uncomfortable, like some smells (me too!). He said he found it hard to “act normal” (he was doing a good job), and he found it hard to remember things (sounds like some people I used to work with).  His concluding message was that everyone needs to understand autism and focus on what he could do, not what he could’nt.  And we should all value the unique perspectives of all people.

The next speaker was another “self-advocate”. He was an adult who was bilingual (my low functioning son can’t speak one language….can someone who speaks two claim to represent him?).  The young man also apparently worked (or was it volunteered) at a local cable tv station. He read his speech in French. He commented on the lack of resources in the school system for people like him.  He pleaded for more patience and understanding.

The next speaker was a lady named Courtney who was very lively and asked the crowd “how’s everybody doing?”. She sounded like a motivational speaker. She is completing her MA in disability studies at York University and writes articles for various disability publications.  She then confirmed that she was diagnosed with Asperger’s at age four.  Finally!  Some truth in labelling.   So what does someone so high functioning tell the crowd?  There is a need to raise awareness. She then provided a series of “tips”. The first two were for those people on the spectrum: (1) be an expert in the area of your choice (yes, she said that – I think she forgot that not everyone on the spectrum is high functioning), and (2) don’t think you can get away with any kind of behaviour just because you have autism.  For the teachers: (1) teachers need to understand ASD, and (2) students in the classrooms also need to know about ASDs. she concluded with two tips for “policy makers”: (1) there should be mandatory training for employers about what people with ASD can do for them, and (2) different kinds of communication tools shoudl be available to all families with a member with ASD because that would help improve communication.

So…there is an increasing fondness among many autism organizations for “self-advocates”. Unfortunately, they only seem to be able in representing the “high functioning” end of the spectrum, and as a result they mislead the public about what autism involves, and they do not reflect the desperate and urgent challenges (indeed, crisis) affecting every family with a severely affected child.

The next speaker was Senator Jim Munson.  He said that this annual day was very emotional for him. He made a comment about too many kids on waitlists.  He then talked about how he heard a “new self-advocate” on Monday this week speaking at a school assemly. The boy was 11 years old and Senator Munson was impressed.  He went on to state that our community is increasingly speaking with one strong voice and increasingly encouraging the government to share “the journey”. The federal Tories a few years ago developed a plan to assist disabled people with employment, and now he said we needed a NAS led by the feds.  It is about human rights and we’re not going away. He said he would retire in four years (the Senate mandatory retirement age is 75) and that he would keep working for a NAS after that, if necessary, but he hoped it would be done before he retired.

The next speaker was the Minister for  Sports and Disabilities, Carla Qualtrough. She is apparently legally blind.  She said that her task was to make life better for Canadians with disabilities and to ensure inclusion from the start. She claimed to be our biggest champion in the House and Cabinet.  Then she encouraged the audience to “keep the fight going”.  If ever there was a politicians who went through motions without ever saying anything meaningful or concrete, that was it.

The next speaker was a young man name Matthew. I’m not sure who he was or where he came from. But he was introduced as being a person who was committed to a NAS.  He said he started his career dealing with respite. He said there was a need to talk about the things people can do and the things for which they have potential.  He then claimed that “we won’t stop until the job is done!”. I was not sure what job he was talking about.  He may have been a politician.

Then Senator Wanda Bernard spoke. She was loud.  Everyone on Parliament Hill could hear her. She has a grandson with autism. She said we need to get beyond awareness and go to action (!!!!).  She then said that kids with autism need to get all the support they need.  I noticed that no one clapped at these statements which were the most important ones of the event so far. I would have clapped but I was taking notes. She then said that we need a NAS, which would including access to things “we take for granted” (I wish she would have elaborated here on what she was specifically thinking of). Regrettably, neither she, nor any other speaker, ever said the words “Applied Behaviour Analysis” or “ABA” or “Treatment”.  Then, she said that she asked the Parliamentary Poet Laureate to write a poem about autism. Of course, at that moment, the audience burst into applause (I kid you not).

Then MP Seamus O’Regan spoke. His first cousin has a child with autism and he described how it affected the family life. Regrettably, I was distracted by some people who asked me to sign the petition I had, and I missed some of what the speaker said, but if it was like his speech last year, he said nothing about the public policy gaps or what the government should do and what he is doing to help.

Finally, Mike Lake, the MP from Edmonton, took the microphone. As he often does, he brought his teenage autistic son with him. Regrettably, his son is non-verbal, so he did not say anything. A lady leaned over to me and commented that she finds the way he uses his son as a prop somewhat of a turn-off. Lake then said that he is a critic for something and that he had two goals.  One had to do with girls having opportunities. The other was that “every disabled person in the world have the same opportunities as my son”.

What?  His son was a beneficiary of the system that exists(ed) in Alberta. He apparently got ABA at a young age and an assistant in the classroom.  But Lake did not mention that while his family was waiting for the ABA program to start, a professional hockey player on the Edmonton Oilers gave him a cheque for $10,000 to start a program. Lake told this to me and Laurel Gibbons in his office when we went to see him after he was first elected about a decade ago.  (At that same meeting he gave us back a petition we gave him and said he would not table it!) Well, I’m wondering whether Lake’s goal is that every disabled kid should know a professional athlete with money to spare? Again, his speech had no specifics about what is missing across the country and what needs to be done.

Then he talked about the “Canadian Autism Partnership” exercise that was meant to advise governments within their jurisdictions. That’s codeword for: “it’s not federal”.  Then he concluded with his message: the agencies across Canada are increasingly speaking with one voice and the self-advocates are the most important speakers. He is sure that the CAP thing will be funded in future budgets, and that he and his colleagues were all committed to it (although evidently neither the current Finance or Health Ministers are).

Well, that’s it.  As I was leaving a number of people asked to sign my petition. One parent told me that she wanted to cry.  I told her that I do too.

[Andrew Kavchak]

Hi Folks,

We all know that our community faces challenges and that improving the situation involves prioritizing and lobbying the government.  Most of us don’t have a whole lot of time to waste, so it is really important to be efficient with our lobbying time, right?  I always thought that the priority of our community should be obtaining access to treatment (i.e. IBI/ABA) under Medicare. That’s what the Auton case was all about. If children who are diagnosed get the treatment they need without undue waiting (and wasted time), for as long as they need it, then chances are the other related life cycle costs (e.g. supports in the schools and in living accommodations, etc.) will be diminished.  So that’s the primary thing that many of us have been lobbying about.

Well, after the non-response of the federal government to this CAP proposal, the CAP folks have issued a press release, which is available at:

http://www.capproject.ca/index.php/en/news

In it, the CASDA folks, indicate that while they are disappointed that yesterday’s federal budget did not provide the funds that they requested for their CAP project, they will continue “the push to establish a Canadian Autism Partnership”.

Get it?  These CASDA folks, who present themselves as leaders of our community and spokespersons for us, will not be focussing all their energies on lobbying government for access to treatment under Medicare. Instead, they will keep on lobbying for $19 million for a new bureaucracy that will engage in “issue identification”, etc.

Imagine what kind of impact it might have if instead they had issued a press release that said, “OK, we tried to get the government to create a new autism bureaucracy, and so far, it has not worked. We’ve decided to focus our energies on lobbying for a few priority issues, of which one paramount issue is getting access to IBI/ABA treatment under Medicare”?

I know that I would certainly join the bandwagon if they did that.  However, it is really difficult to develop any sense of enthusiasm for their “we want a new bureaucracy first” approach, which will obviously delay addressing the treatment issue.  Ironically, the first person who is quoted in the press release as being disappointed with the lack of government support for more bureaucracy, is Cynthia Carroll, Chair of CASDA.  In a “rebuttal” to my op-ed piece that was published in several papers across Canada in January, she wrote that the autism community would benefit from being “a unified community fighting together as one”.   Indeed, it would be great if we could all “get with the program”, but I don’t see the logic in that CAP program.

Ms. Carroll also wrote in her rebuttal to my article that “…the current system has let down not only his son, but thousands of Canadians on the autism spectrum. We share his disappointment, and we stand in solidarity to support his call for action.”  My call for action has always been for a National Autism Strategy that would see the feds negotiate a funding formula with the provinces to ensure access to treatment under Medicare without undue delays as well as the elimination of the 10 year waiting lists for housing accommodation.  I have not seen the CAP project proponents or the CASDA folks issue any press release calling for that.  Have you?  So much for “solidarity” and “unified community”.

Here is a link to the video where I elaborate on the need for a National Autism Strategy.

 

 

[Andrew Kavchak]

Hi Folks,

Some interesting developments, or non-developments….

1. Yesterday the provincial government of Quebec announced its long-awaited “autism strategy”.  Over the past few months there have been quite a few media stories about people leaving the province because the wait lists for access to treatment were too long, and other parents recently formed a “Quebec Autism Coalition” (similar to the Ontario Autism Coalition which has been running for over a decade), in order to lobby the government, etc. The autism strategy is described here: http://montreal.ctvnews.ca/quebec-to-spend-29m-on-new-autism-strategy-1.3333643  Even though the Premier of Quebec is a doctor, there does not seem to be any sense of urgency or alarm. The strategy is to spend $29 million over six years (up to 2022) on various things (eg. supports).  However, there are now apparently 700 kids on waiting lists for treatment, and the government “hopes” to reduce the waiting list by 45%.  Clearly, access to IBI/ABA is not a number one priority in Quebec.  While Quebec recently signed a Health Agreement with the Feds for funding for Medicare, as well as “mental health” and “home care”, that agreement did not cover autism.
2. Today’s federal budget seems to have billions for housing and child care spaces, but I did not come across one reference to autism.
3. Some people thought that the federal budget would have been the place where the federal government may have announced its decision regarding the “Canadian Autism Partnership” Project proposal (CAP) which was a recommendation by a group to the government to spend $19 million over five years for the creation of a new autism bureaucracy that would engage in “issues identification”, etc.  I previously wrote about this in previous posts.  My previous comments were based on the “executive summary” of the “CAP business plan” that we submitted to the Minister of Health in November, 2016.  Well, it appears that there is no mention of the CAP project in the budget and no corresponding funding at this time.  As I previously indicated, I think this is a good step, as we need issues to be addressed, and not shuffled off to some new bureaucracy for “issues identification”.  However, the CAP proponents have now posted online the larger “business plan” (without some financial budget plans) on their website at: http://www.capproject.ca/images/pdf/CAPP_Business_Plan_EN.pdf    The part I find interesting is where they elaborate on the issues part. At page 11 they elaborate on five “complex issues”.  These are: (1) early identification of ASD, (2) enhancing employment opportunities, (3) housing options, (4) access to specialized mental health supports (e.g. anxiety, depression), and (5) Education (this section does not mention “treatment”, or “IBI” or “ABA”).  Thus, even though the working group putting this CAP project proposal together spent a lot of time consulting and putting this proposed plan together, they did not consider the lack of IBI/ABA under Medicare to be a priority issue.  In fact, a search of the 66 pages of the document reveals that the terms “Applied Behaviour Analysis” and “ABA” did not come up….not even once.
4. It appears that Autism Awareness Day is on Sunday, April 2, 2017.  The usual organizers are planning the annual rally on Parliament Hill for Wednesday, April 5 at noon. The usual suspects are expected to show up, including the MP who brings his son with autism, but does not actually say anything about the public policy gaps and what needs to be done. I previously made a video discussing the need to move beyond talking about how much we love our children and to talk about what the governments should do to help them. It is available at: https://www.youtube.com/watch?v=L3Azg3v3TUI   Not surprisingly, the CAP project proposal, which is silent on ABA and the discrimination in Medicare, thanks the MP in question for his involvement and support (“…tireless championing…” of what?  for what?).   I don’t know if I will go this year, but if I do, I will be listening to hear if anyone besides Senator Munson will mention the need for a National Autism Strategy.

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