[Andrew Kavchak]

Hi Folks,

Well, well…freedom of speech strikes again. Hooray!

https://www.cbc.ca/news/<wbr />politics/charity-political-<wbr />audits-cra-lebouthillier-<wbr />farha-poverty-environmental-<wbr />gray-liberal-1.4750295

So maybe now some autism organizations can finally move beyond “awareness”.

 

[Andrew Kavchak]

Hi Folks,

Further to the reference in the House of Commons debates yesterday about Mike Lake talking at some autism symposium, there is this interesting summary at the following page:

On Route to Adulthood: A Special Needs Information Fair

The description of Mike Lake’s contribution to the symposium is as follows: “National Autism Advocate MP Mike Lake was in attendance and provided an engaging presentation on his personal connection to Autism.”

Any parent of a child with autism has a “personal connection” to autism.  We can all meet and talk about our children and offer encouraging words of support.  But from a politician, I expect more.  Especially one who has himself described as a “national autism advocate”.  An MP with a personal connection to autism and with 12 years experience in the House (nine years on the government side) should be able to talk about what is needed and describe a vision of government public policy that is responsive to the needs of our community. He should be able to describe what was done in the recent past to improve public policy in this regard, and describe in concrete terms the next steps of what needs to be done to improve the lives of our children. He should be able to outline what he is agitating for and hopefully give us confidence that there is someone on the Hill who knows what our needs are and who is championing our cause.  Instead, it seems that he did what he always does on World Autism Awareness Day and related rallies come up: talk about his son and how great his son is and how much he loves him, etc.  We get it Mike, we get it.  Can we get some action now? Can you say “Medicare for autism now”? Try it.  Just once.

[Andrew Kavchak]

Hi Folks,

First, regarding the Liberal Party of Canada’s Medicare for autism treatment resolution, you may recall that a few posts ago I indicated that the policy group within the party that was working on a report relating to the resolution and its implementation had delivered their report to the caucus liaison MP, Ken Hardie.  Well, a few weeks ago I sent his office an email asking about the status of the report and what does he plan to do with it.  And his reply was…..no reply.  At least, none yet.  I’m not holding my breath and I have given up on getting a reply from the guy. Although one of the report’s authors wrote to me saying that Ken Hardie is “very supportive”, I don’t have any evidence to back that up, and the silence (really, how long does it take to reply by email to say something like “we’re in receipt of the report and are currently reviewing it with a view to determining next steps” or “yeah, we got the report, we’re busy with other pressing issues and this ain’t one of them”?) is somewhat indicative of the contrary.

Second, the word “autism” came up in the House of Commons 14 times yesterday (Monday, September 24, 2018).  The context was a debate regarding Bill C-81, titled “An Act to ensure a barrier-free Canada”.  This Bill is worth exploring…I have not studied it yet, but there is a possibility that there may be some potential benefits to our community in this Bill.  The Bill’s “Summary” states the following:

“SUMMARY

This enactment enacts the Accessible Canada Act in order to enhance the full and equal participation of all persons, especially persons with disabilities, in society. This is to be achieved through the progressive realization, within the purview of matters coming within the legislative authority of Parliament, of a Canada without barriers, particularly by the identification, removal and prevention of barriers.

Part 1 of the Act establishes the Minister’s mandate, powers, duties and functions.

Part 2 of the Act establishes the Canadian Accessibility Standards Development Organization and provides for its mandate and structure and its powers, duties and functions.

Part 3 of the Act authorizes the Accessibility Commissioner to provide the Minister with information, advice and written reports in respect of the administration and enforcement of the Act. It also requires the Accessibility Commissioner to submit an annual report on his or her activities under the Act to the Minister for tabling in Parliament.

Part 4 of the Act imposes duties on regulated entities that include the duty to prepare accessibility plans and progress reports in consultation with persons with disabilities, the duty to publish those plans and reports and the duty to establish a feedback process and to publish a description of it.

Part 5 of the Act provides for the Accessibility Commissioner’s inspection and other powers, including the power to make production orders and compliance orders and the power to impose administrative monetary penalties.

Part 6 of the Act provides for a complaints process for, and the awarding of compensation to, individuals that have suffered physical or psychological harm, property damage or economic loss as the result of — or that have otherwise been adversely affected by — the contravention of provisions of the regulations.

Part 7 of the Act provides for the appointment of the Chief Accessibility Officer and sets out that officer’s duties and functions, including the duty to advise the Minister in respect of systemic or emerging accessibility issues.

Part 8 of the Act authorizes the Governor in Council to make regulations, including regulations to establish accessibility standards and to specify the form of accessibility plans and progress reports. It also provides, among other things, for the designation of the week starting on the last Sunday in May as National AccessAbility Week.

Part 9 of the Act provides for the application of certain provisions of the Act to parliamentary entities, without limiting the powers, privileges and immunities of the Senate, the House of Commons and the members of those Houses.

Parts 10 and 11 of the Act make related and consequential amendments to certain Acts.”

The purpose section of the Bill states the following:

<h2 lang=”en”>“Purpose of Act</h2>

Purpose

5 The purpose of this Act is to benefit all persons, especially persons with disabilities, through the progressive realization, within the purview of matters coming within the legislative authority of Parliament, of a Canada without barriers, particularly by the identification and removal of barriers, and the prevention of new barriers, in the following areas:

(a) employment;

(b) the built environment;

(c) information and communication technologies;

(d) the procurement of goods and services;

(e) the delivery of programs and services;

(f) transportation; and

(g) areas designated under regulations made under paragraph 117(1)‍(b).”

Just off the cuff, it seems to me that the decision of provincial governments to not extend Medicare coverage to include autism treatment constitutes prima facie evidence of a “barrier” to “the delivery of programs and services”, but sometimes one should not allow reason or objective and rational thinking to get in the way until one has read the fine print of these government documents.

And so how did the references to autism come up?  Here are some quotes from yesterday’s debate:

<b>“Mr. John Brassard (Barrie—Innisfil, CPC): </b>

Madam Speaker, in my riding of Barrie—Innisfil, I have been dealing with Gloria Noseworthy, who has an organization called the Crossroads Community Centre, which helps adults with autism transition from their younger years into adulthood. We were very fortunate this weekend to have the member for Edmonton—Wetaskiwin come to speak at an autism symposium that Ms. Noseworthy had put on.   One of the concerns that was raised among parents of adult children with autism is their ability to access employment. Many of them currently have skill sets that can be applied. For example, it is well known that the member for Edmonton—Wetaskiwin‘s son Jaden works in a library. He does a great job.    How would this legislation help address the concerns of people like Gloria and other parents who have children with autism who are transitioning into adulthood?”

Note: the reference to the “member for Edmonton-Wetashkiwin” is to Mike Lake.   Besides talking about his son Jaden, I wonder what is the likelihood that his speech at this “autism symposium”  included some discussion of public policy and what the federal government should do to help people with autism and an explanation of why his party did not do what he recommends when they were in power, etc.

“<b>Mr. Arif Virani: </b>

Madam Speaker, I appreciate the member opposite’s genuine concern for this important issue. Empowering and unleashing the potential of people who are living with autism as they transition to adulthood is critical, and that is exactly what informs this entire piece of legislation. I would redirect the conversation to what I outlined in my speech about the opportunities fund, which is about ensuring that young people, including people with disabilities, have skills. It is also about matching them with employers who are ready, willing and able to employ such persons but literally do not know how to go about doing so because they do not have the resources at hand. Providing that match is fundamental. For parliamentarians on both side of the floor, it is incumbent upon us to facilitate that kind of matchmaking and unleash this potential, not just for autistic young adults but for all young adults with disabilities.”

Note: don’t you love it when politicians use language such as “…empowering and unleashing the potential of people who are living with autism…is critical…” but won’t dare mention “Medicare coverage for applied behavior analysis treatment for autism”?

Then Diane Finley rose to talk about her party’s accomplishments and made a reference to autism:

“We partnered with the Canadian Association for Community Living on the ready, willing and able initiative to connect people with developmental disabilities with a job. We also invested in expanding vocational training programs for people with autism spectrum disorders.”

Then Kelly McCauley did the same:

“There was over $200 million for labour market agreements for persons with disabilities to assist provinces in approving the employment situation of Canadians with disabilities, and millions of dollars for the ready, willing and able initiative of the Canadian Association for Community Living to connect persons with developmental disabilities with jobs, and millions to support the expansion of vocational training programs for persons with autism spectrum disorder, and on and on.”

He went on to further denounce the current government:

” Who else did the Liberals target in their tax grab? They targeted people suffering from autism and severe mental health disorders. Autism Canada says it is hearing too many stories of people who have had the disability tax credit, sometimes for decades, for their children with autism taken away.”

And he concluded with:

” We have a lot of issues with this legislation, but we do support it. We support the work that we have done in the past toward helping disabled individuals. We continue to do so with our private members’ bills, such as the one put forward by the member for Calgary Shepard and the member for Carleton. Both have produced bills that would show tangible results for the disabled without the resources the government has, whether it be easier access to the disability credit for those who are suffering from autism, diabetes, or mental health disorders, or as my friend from Carleton has put in his bill, that would encourage the disabled to get back to work. His bill would not punish someone by taking away benefits because they had a job. Nothing is better for the dignity of Canadians than having a job.”

And then John Barlow spoke and while outlining how great his party is, he said this:

” We created a working group that was tasked with developing a national autism strategy.”

And he later repeated it again:

“Under the previous Conservative government, we introduced the registered disabilities savings plan, which quickly gave Canadians with disabilities increased financial security. We introduced a new home accessibility tax credit and developed a working group tasked with developing a national autism strategy.”

Note: once again, we are witnessing the revision of history and political myth-making in action.  Mike Lake convinced his party leadership several years ago to put some money into funding the activities of a “working group” that would create a “business plan” or proposal to government for the creation of what they called the “Canadian Autism Partnership”.   If you read the executive summary, the words “national autism strategy” do not show up once.  The working group’s report was delivered after the last federal election when the Liberals were elected.  As this was not their baby, they did not say a word about it in their budget of last year.  So Mike Lake tabled a motion for it to be funded. During the debates we saw Erin O’Toole (a Tory leadership candidate) refer to the CAP project as some sort of “national program”.  Now we see this evolution as the CAP project concept morphs into being about the creation of a “National Autism Strategy”.  And what’s more, in terms of going back and revising historical fact, the storyline now is that the Tories created the working group and “tasked” them with developing a national autism strategy.  Does that mean they will now say the Conservative Party of Canada was in favour of the creation of a national autism strategy and were prepared to implement such a strategy but those rascals in the Liberal Party of Canada are sabotaging their great vision for autism public policy in Canada?  Of course, they did not task them creating a national autism strategy (the working group mandate is outlined at the beginning of their report…just google it).  However, would it be possible for some folks in our community, perhaps some community leaders, to send these two quotes with a request for clarification….if you “tasked” (and funded) a working group with the creation of a national autism strategy, should this be interpreted to mean that the Conservative Party supports the creation of a national autism strategy?  If so, what are you waiting for to present to Canadians your proposal for a National Autism Strategy?

[Andrew Kavchak]

Hi Folks,

Well, after the long summer break, the federal politicians were back in Ottawa yesterday for a new session.  As I looked at the Hansard, one MP made a statement that struck me as interest.  Take a look below, and imagine how different things would be if the disorder in question was switched to “autism”.

Monday, September 17, 2018

“The Fight against TB

<b>Mrs. Brenda Shanahan (Châteauguay—Lacolle, Lib.): </b>

Mr. Speaker, in July, I went to Seoul, South Korea, as co-chair of the Global Health Caucus to attend an important meeting with the Korea TB Caucus. The purpose of this visit, sponsored by RESULTS Canada, was to speak to members of the National Assembly, representatives of Stop TB Partnership Korea, and members of civil society about my experience in Canada’s fight against TB. The participants identified ways to get the most deadly infectious disease on the planet addressed at high-level United Nations meetings. This strategy was effective, since the fight against TB was put on the agenda for a meeting to be held on September 26. I look forward to seeing what commitments come out of these discussions.”

Imagine…a co-chair of the Global Health Caucus (wait! “Isn’t that provincial?” I wonder if Mike Lake is asking) attending a meeting in a foreign country with the [X country] Autism Caucus.  And the meeting would be sponsored by “Autism-Related RESULTS Canada”. For purposes of speaking to members of the national legislature of another country in the developed world, as well as members of the “Stop Autism Partnership [X country]” and members of “civil society” about the Canadian MP’s experience in fighting autism in Canada.   Imagine a Canadian MP working with others in other countries to identify ways to get autism addressed at high-level United Nations meetings.  Imagine if the strategy (obviously not a Canadian “national autism strategy” but a Global Autism Strategy), or some other kind of autism agitation and lobbying strategy was effective, since the fight against autism would be put on a meeting agenda for next week.  And the MP would publicly state that they are looking forward to seeing the commitments in the fight against autism coming out of these discussions.  Wow. Wouldn’t that be something?  Well, like they say in the 6/49 lottery commercials….imagine.

On a different note, this morning I got the latest newsletter by email from Autism Canada and the first item in it gave me quite a chuckle.   As you know, the autism societies are prevented from doing any political lobbying (or they risk losing their charitable status and jeopardize the financial viability). Thus, instead on mounting campaigns to try to change government policies (e.g. getting Medicare coverage for autism treatment), they tend to mount “Autism Awareness” campaigns. I have already produced a video on YouTube and written on the FEAT BC website discussion board about what I believe are the shortcomings of such “awareness” campaigns.  However, it now appears that the national autism society has decided to mount a National Autism Awareness AND ACCEPTANCE campaign.  The acceptance part is new (at least, to me it is).  I suppose acceptance means different things to different people, but while I deal with my child’s autism as best I can and try to help him develop and enjoy life as much as he can, I can’t imagine myself ever “accepting” autism, anymore than I would accept cancer (one of his respite workers of eight years just died from that cancer in August), or any other debilitating disorder. However, the funning thing here is that the Autism Society is apparently really hooked on the “awareness” component.  The newsletter refers to “National Autism Awareness and Awareness Month”. I get it, I get it!

[Andrew Kavchak]

Hi Folks,

Well, after the long summer break, the federal politicians were back in Ottawa yesterday for a new session.  As I looked at the Hansard, one MP made a statement that struck me as interest.  Take a look below, and imagine how different things would be if the disorder in question was switched to “autism”.

Monday, September 17, 2018

“The Fight against TB

<b>Mrs. Brenda Shanahan (Châteauguay—Lacolle, Lib.): </b>

Mr. Speaker, in July, I went to Seoul, South Korea, as co-chair of the Global Health Caucus to attend an important meeting with the Korea TB Caucus. The purpose of this visit, sponsored by RESULTS Canada, was to speak to members of the National Assembly, representatives of Stop TB Partnership Korea, and members of civil society about my experience in Canada’s fight against TB. The participants identified ways to get the most deadly infectious disease on the planet addressed at high-level United Nations meetings. This strategy was effective, since the fight against TB was put on the agenda for a meeting to be held on September 26. I look forward to seeing what commitments come out of these discussions.”

Imagine…a co-chair of the Global Health Caucus (wait! “Isn’t that provincial?” I wonder if Mike Lake is asking) attending a meeting in a foreign country with the [X country] Autism Caucus.  And the meeting would be sponsored by “Autism-Related RESULTS Canada”. For purposes of speaking to members of the national legislature of another country in the developed world, as well as members of the “Stop Autism Partnership [X country]” and members of “civil society” about the Canadian MP’s experience in fighting autism in Canada.   Imagine a Canadian MP working with others in other countries to identify ways to get autism addressed at high-level United Nations meetings.  Imagine if the strategy (obviously not a Canadian “national autism strategy” but a Global Autism Strategy), or some other kind of autism agitation and lobbying strategy was effective, since the fight against autism would be put on a meeting agenda for next week.  And the MP would publicly state that they are looking forward to seeing the commitments in the fight against autism coming out of these discussions.  Wow. Wouldn’t that be something?  Well, like they say in the 6/49 lottery commercials….imagine.

On a different note, this morning I got the latest newsletter by email from Autism Canada and the first item in it gave me quite a chuckle.   As you know, the autism societies are prevented from doing any political lobbying (or they risk losing their charitable status and jeopardize the financial viability). Thus, instead on mounting campaigns to try to change government policies (e.g. getting Medicare coverage for autism treatment), they tend to mount “Autism Awareness” campaigns. I have already produced a video on YouTube and written on the FEAT BC website discussion board about what I believe are the shortcomings of such “awareness” campaigns.  However, it now appears that the national autism society has decided to mount a National Autism Awareness AND ACCEPTANCE campaign.  The acceptance part is new (at least, to me it is).  I suppose acceptance means different things to different people, but while I deal with my child’s autism as best I can and try to help him develop and enjoy life as much as he can, I can’t imagine myself ever “accepting” autism, anymore than I would accept cancer (one of his respite workers of eight years just died from that cancer in August), or any other debilitating disorder. However, the funning thing here is that the Autism Society is apparently really hooked on the “awareness” component.  The newsletter refers to “National Autism Awareness and Awareness Month”. I get it, I get it!

 

[Andrew Kavchak]

Hi Folks,

Well, about a year ago or so I thought that there were two government-related initiatives which may prove potentially useful to the community. One was the long-awaited report from the Public Health Agency of Canada relating to prevalence rates.  Sure enough, it came out and concluded what most of us already assumed, that the figures for the prevalence rates of ASD in Canada is probably similar to the prevalence rates reported by the U.S. Centre for Disease Control (CDC).  One of every 68 people in Canada is on the spectrum.  OK, now that we have an idea of how big the epidemic is, how can we use this figure from the government bureaucracy to influence improvement in public policies relating to autism?  (I still remember meeting Mike Lake when the prevalence rate was 1 in 150 and he replied “I don’t believe that!” – I wonder whether he’s changed his mind.)  Bottom line, as far as I can tell, the prevalence rate report has not had any significant impact (at least, none that I am aware of so far).  While I have seen some reference to the figure from time to time, it is not the basis of any concerted or coordinated effort to get better programs for our kids.

The second matter was the federal Liberal Party policy committee working group that was working to develop a report for the government on how to implement the resolution relating to Medicare coverage for ABA treatment for autism,  passed two years ago at their policy convention.  I was interviewed on the phone (30 minutes) by a member of the working group and I looked forward to their report.  Earlier this year I was provided a “draft” for comments.  To be honest,  I was disappointed by the content and tone of the report.  I provided a long list of comments. I assumed that there would be a “final” draft that would eventually be formally delivered to the Party (i.e. all the MPs in the caucus) and made available to the public (as apparently some similar reports about marijuana legalization, etc. were).  I was hoping that we would be informed how the Party (and the Cabinet) intended to deal with the report, (e.g., whether there were any more committees that were going to study it, or an ad hoc group of MPs to review it and make some recommendations to the appropriate Ministers, or something).  So what has happened?  Every once in a while I inquire, and the latest that I have been able to find out is that the report was given to the federal Liberal caucus (i.e., the Liberal MPs, presumably including Cabinet Ministers and the PM).  However, I was informed by some in the process that what was given to the Caucus is the “draft report”. From my experience in the civil service, a draft report is normally prepared and circulated to stakeholders for comments, and then the draft is amended to produce the “final” report.  I am under the impression that the draft report that was circulated to me and others many months ago for comments was not in fact amended. I have a copy of the draft that was sent to me, but as far as I can tell, it has not been the subject of any official “communication” and is not posted online anywhere.

So if it was given to the Liberal MPs, now would be a good time for our community to lobby the MPs about it.  But does the community know of the contents of the report? Does our community know that the MPs have something in their hands that may potentially have a huge consequence for our children?  Has any MP reached out to a parent and asked “what do you think about this report on this autism resolution?”  I doubt it. Even if there was one, or two, that’s nothing.  What we need is some serious and massive community agitation to get the MPs to take the report off the shelf and actually tell the Minister of Health what they think about it and want done with it. But instead, there seems to be a whole lot of …. silence.

Silence….just as when the Liberals were debating the Mike Lake CAP resolution and none of them actually said a single word about the CAP proposal and its merits (or lack thereof).  Similarly, six months after an announcement in the budget of millions for an autism website, the opposition has not made any public comments on this budget item (at least, none that I am aware of), and the government and its contractor have not provided any update on the status of the website and when it will be launched.  Just more silence.   This seems to be the pattern relating to the treatment of the autism file.  Perhaps Autism Canada or CASDA or some other autism group might have some relevant information that they could share publicly?

Apparently BC MP Ken Hardie is the Caucus liaison to the National Policy Committee of the Liberal Party.  Apparently he is a “big supporter of the resolution”.  So, to all those in the community, I would like to suggest that you consider contacting Mr. Ken Hardie MP and inform him of your views of the resolution (which is publicly available here:)

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

And you may also consider telling him that you understand he has a “draft report” on the autism resolution from the Policy Committee of the Liberal Party, and that you hope it is a good report, but that you can’t comment on it since it is not publicly available and you would like to know if it will be made public or does one have to make a specific “Access to Information Act” request to get a copy?  You may also consider asking him if he is so supportive of the resolution, what is he doing about it (and give him your suggestion about what he should do)?  What are the next steps on a possible road to implementation (or did this resolution and report hit a dead end?) Etc…

Ken Hardie’s contact info is available here:

http://khardie.liberal.ca/

 

 

[Andrew Kavchak]

Hi Folks,

A couple of things of note…

First, the Ontario Human Rights Commission issued a report this week about the education system and students with disabilities.  Generally speaking, the education system is not doing as well as it should, or could.

http://www.ohrc.on.ca/en/news_centre/ohrc-releases-new-policy-and-recommendations-accessible-education

http://www.ohrc.on.ca/sites/default/files/Policy%20on%20accessible%20education%20for%20students%20with%20disabilities_FINAL_EN.pdf#overlay-context=en/users/aspeller

The report is kind of depressing.  One has to remind oneself that it is 2018 and not 1950.  Yet, the same themes seem to repeat themselves over and over.  The report is 163 pages long and mentions the word “autism” once, in the context of an example relating to transportation.

Secondly, it has now been six months since the federal government announced in its budget that it was going to spend millions(!) of dollars on the creation of an autism website over a five year period.  Some of you may remember that on February 28 the Miriam Foundation in Montreal posted a news release about how they were going to be involved.

https://www.miriamfoundation.ca/en/news/95-miriam-foundation-and-pacific-autism-family-network-will-receive-109-funding-to-help-canadians-impacted-by-autism.html

I also remember seeing a video interview clip with someone from the foundation stating that this was a great development because in terms of autism information websites, “there’s nothing out there” (his words).  So…..here we are six months later, and what?  Well, as far as I can tell, “there’s [still] nothing out there”.  Oh, I know, I know, it takes the government a long time to get set up with new programs and to get the process going to cut the first cheque, but is it too much to expect that the beneficiaries of this new program would post at least some sort of update about the progress and expected timelines for the expected launch of the website? I checked the Miriam Foundation’s website news releases, and as far as I can tell, the last post was the announcement of February 28.  So….the program and budget is slated for five years.  One tenth of that time frame is now presumably history.  Any guesses on when the website in question will hit cyberspace?

On the same topic, I’ve been wondering whether the opposition, i.e., Mike Lake and his Conservative colleagues or the guys in the NDP who occasionally show up at “Autism Awareness” rallies to profess their support for the autism community, has actually publicly stated anything about the budget provisions relating to autism.  For a long time Mike Lake was pushing for his “Canadian Autism Partnership” plan, but when the federal Liberals announced an alternative budget plan for autism (which exceeded the CAP proposed budget by $1 million), I assumed that he would make some sort of reasonable comment about the pros and cons of what the government was doing (as a high profile parent in the community), and then criticize the measure (as a partisan politician can be expected to do). Yet, I have not come across any comment (whether critical or not) from the opposition about the government’s autism provisions in their last budget.  Why?  Well, if they criticize it, they set themselves up for accusations and criticisms when they themselves come to power and do less.  Is that right?  I would be interested if Mike Lake could address this issue of his silence on the matter and provide a rationale.  Perhaps FEAT BC administrators could give him posting rights on this board and invite him to respond and engage in some serious public policy debate on the matter (since such debate NEVER occurs in the House of Commons….the serious kind, I mean)….it would be interesting to read what he would have to say on the matter.  Oh boy, just thinking about it makes me want to sharpen my pencil.

[Andrew Kavchak]

Hi Folks,

Here’s an update about the status of autism treatment policies across the country.

Back in 2007 when a Senate committee was studying the issue of funding for autism treatment, the Library of Parliament Research Branch prepared a study for the committee members which outlined the basic information about the various provincial programs across the country.  The study was posted online and is available at:

https://lop.parl.ca/content/lop/researchpublications/prb0622-e.htm

Well, here we are more than a decade later, and Autism Canada has prepared an update of the document to reflect the current programs that exist in every province and territory. It is available here:

https://autismcanada.org/wp-content/uploads/2017/12/AC_ProgramsForAutismTherapy.pdf

I wonder how people who read the document will interpret it.  On the face of it, a politician who was not aware of the details might look at the document and conclude that “every province has a program, and some even have several!” The result in such a situation is that the politician might believe that everything is being taken care of and thus move on to more “pressing issues”.

My first thoughts when I looked at the document included scanning the sections which identify the ministry (government department) responsible for the program.  How often does “Health” appear in the title?  Not often.  Are the source of the budgeted funds spend on the programs identified?  Nope. If there was such box, it would be nice to know whether the words “Medicare” or “Public Health Insurance” would ever appear.

Our community needs such a document to be able to specifically outline what is currently available.  But the documents is a bare bones listing that could go much farther and be more useful if it had a little bit more information.  For example, there is only one mention of “wait times” (Nova Scotia).  Each program has strengths and weaknesses…what are they?  Wait times is a huge weakness.  Similarly, the reference to the “Special Services at Home” program in Ontario suggests that it is available to help families pay for services, etc.  However, I can tell you from experience that when we first applied we were initially denied any assistance and were informed that it is “not an entitlement program” and that there were limited resources, unlimited demands, and the program administrators had to decide who got how much, and who got nothing. What do those who get nothing have to do to get on the list of those who get something?

Every once in a while the media report a story about a family in distress getting no help (e.g., one recent high profile case from Nova Scotia where the mother asked the PM about it at a town hall meeting), or families who band together to launch human rights tribunal complaints, etc. (e.g., as was recently the case in Quebec).  It would be nice if this document would include such matters to help put the situation in perspective.

Ultimately, our community could use a document that lists what is available, what is needed, what is the shortfall, and what needs to be done to improve the overall situation.  However, you know, I know, and we all know, that getting any consensus in the autism community about what is in the autism community’s best interests when it comes to government public policy is hard to do and painful to observe. Sometimes the community debate and politics is difficult to follow and understand.  Who would have predicted that Autism Canada would participate on the working group creating a business plan for a “Canadian Autism Partnership” proposal, and then, after the proposal was published and made public with references to Autism Canada in it, would subsequently announce their withdrawal of support for the whole thing and from the alliance (CASDA) that was promoting the project?  Who?

Furthermore, since charities have restrictions imposed on their political lobbying, they are not particularly prone to taking any risks and potentially jeopardizing their charitable (and funding) status. Thus, it is not realistic to expect Autism Canada to prepare what our community really needs in terms of a powerful fact-based document with all the “value added” that we need in clear “no nonsense” terms, and which could serve as a manifesto of sorts.  So who is up to it? Perhaps some university study centre or public policy think tank?  Which one would have any understanding or interest in the issues? I wish there were a whole bunch tripping over themselves to announce their embarking on such a project.

 

 

 

[Andrew Kavchak]

Hi Folks,

There was a rather disturbing news report lately about the state of play when it comes to autism policies and program in Nova Scotia. The report can be found here:

Nova Scotia family worries autism wait lists are leaving their daughter behind  

In reading through the story, one is confronted with numerous unresolved issues that have been around for years and years.  Waiting lists for assessments, followed by more waiting lists for treatment, age-based cut off from treatment programs, etc. and the fear that parents have that their child will not access anything because there are hundreds of kids on waiting lists and the passage of time. Meanwhile, the anguish that parents with young children feel is something that most of us who have older kids now can totally understand, and the supporters of the “Canadian Autism Partnership” (CAP) proposal continue to advocate for the creation of a new bureaucracy to engage in “issue identification” (as if they were unknown), etc.

[Andrew Kavchak]

Hi Folks,

A couple of stories in the media of interest….

First, it seems that there is some promise for a new blood test that would detect autism.

https://www.eurekalert.org/pub_releases/2018-06/rpi-sob061918.php

The implications could be significant.  If the blood tests are indeed accurate, will parents be able to have the tests done as a matter of routine verification? Will a positive results alone be sufficient to get on the wait lists for access to treatment?

However, for the test to be effective at detecting autism, it would be helpful if there was a common understanding of what autism is.  As this article suggests, the changing definition has an effect on prevalence rate calculation (well, that’s one way to get rid of a problem, isn’t it?).

Evolving Definition Of Autism Prompts Questions About Prevalence

Finally, there is this heart-breaking story of a mom who took her son for a day trip to a zoo, only to have an intolerant and ignorant stranger make an offensive comment.

https://www.huffingtonpost.ca/2018/06/15/autism-facebook-post_a_23459899/

These kind of stories are the kind of thing that happen, and that we have to be able to deal with without blowing a gasket.  However, just to get this off my chest, such stories demonstrate that the campaigns waged to “raise awareness” should also try to promote respect for the rights of the disabled.  In this sense, Canada could really use a national piece of legislation that would promote such rights and have teeth to ensure they are not ignored.  Given that there is always a segment of society that dislikes seeing people with disabilities, it would at least be somewhat comforting to know that the segment is small and without influence. But during the last provincial election in Ontario we learned that the new Premier (Doug Ford) previously made some disgraceful (and worrisome) comments about a group home for disabled youth having “ruined” a community when he was City of Toronto councilor.

http://www.theprovince.com/news/Doug+Ford+defends+comments+that+youth+group+home+ruined/9851666/story.html

Honestly, when people in government (especially Premiers!) start making disgusting comments suggesting that disabled people (including kids!) should not be seen in areas where there are other “normal” people, what does it remind you of?  Do any historical precedents involving attempts to deal with the “spoilage” or “ruined” or “unfit” come to mind?  Hopefully, these public displays of intolerance will disappear.  Otherwise, when I hear of such comments, in the back of my mind I am reminded of this:

https://www.ushmm.org/information/exhibitions/online-exhibitions/special-focus/nazi-persecution-of-the-disabled

[Author]

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