[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[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:

Click to access 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

[Andrew Kavchak]

Hi Folks,

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

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

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

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

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

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

 

 

[Andrew Kavchak]

Hi Folks,

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

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

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

The text of the resolution is available here:

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

So….what happened? 

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

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

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

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

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

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

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

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

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

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

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

Ever get the feeling you’re going nowhere fast?

[Andrew Kavchak]

Hi Folks,

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

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

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

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

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

 

 

 

[Author]

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