[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,

OK, can we be brutally honest without offending anyone?  Can we be objective in trying to evaluate the impact in recent years of something that started a few years back?

On Tuesday, November 6, 2018, in the Senate, Jim Munson spoke during the third reading of his Bill S-244 “An Act Respecting Kindness Week”.  Yes, that’s right, the Senator would like an (by law) a week to be formally designated as “Kindness Week”.  You may recall that about ten years ago the UN declared a day in April every year to be “World Autism Awareness Day”.  Senator Munson then tabled a Bill in the Senate to declare the same day to be an autism awareness day in Canada.  To me, this is all soft stuff that is merely a first step, or a means to an end, but certainly not an end in itself. Yet, I remember years ago speaking with the former Executive Director of the Autism Society of Canada (ASC) who told me at that time that the laws on charities prevented the ASC from engaging in lobbying, so they were content to just do “awareness raising”.

So what has the past decade or so (a little less in the context of Senator Munson’s autism awareness Bill) achieved?  Well, during his speech yesterday Senator Munson made the following observation:

“When Bill S-244 receives Royal Assent — I hope that will be soon — Canada will be the first country in the world to have a kindness week in law. Let me tell you, honourable senators, briefly, it does matter; it really does matter. Sometimes people say, “Why these weeks, why these days, why should they matter?” Well, because people matter. We all matter. When I had my own private member’s bill on Autism Day, April 2 and this country legally recognizing it — and it took a few years to get that bill through here, but it did pass. Through that, it motivated governments to have chairs of excellence. The Conservative government of the day put a chair of excellence in on autism. There were funding programs and the Canadian autism partnership happened. Schools across the country raised flags and children were being taught your friend beside you just thinks a little differently. He’s not you, but don’t judge him differently because it’s him or her. It multiplies across the country. I think these acts really do matter.”

Chair or chairs of excellence? (Which is it?  Where?)

Funding programs. (Like what?  Autism treatment under Medicare? Where?)

Canadian autism partnership “happened”. (No it did not. A “business plan” was developed but the government never approved it and it is now relegated to recycling bin.)

Schools raised flags. (Yes, indeed.  I met my local city councilor many times and tried to impress upon him the need to improve services to the autism community.  During the recent municipal election he came to my door while canvassing and told me that he was at an autism flag-raising ceremony… I was unsure whether he expected me to vote for him because of that).

Children were being taught that your friend beside you just thinks a little differently.  Oh boy.  That one’s probably the most painful one to read.  Is that what autism and autism awareness is all about?  “Just thinks a little differently”?  Well, let’s be clear, for the high functioning, that may be one way to get other kids in the class to better understand their classmate’s unique behavior.  But for the low functioning, that’s not helpful.  In fact, it is seriously distorts reality and is somewhat offensive.  Low functioning children on the spectrum need some serious help, and suggesting it is just a matter of “just thinking a little differently” minimizes and avoids a very serious complication and problem.  If that’s what “autism awareness” has culminated in, then from my perspective it is not only a failure, but contributed to the obstacles and challenges that parents of low-functioning kids face in trying to educate politicians and public policy decision-makers about the needs of their community.  So often one sees headlines that suggest progress is being made, and then so often one is reminded that one is stuck on an island and ain’t no one’s coming with the rescue ship because “just thinking a little differently” is…just fine.   While I wish Senator Munson good luck with his kindness bill, how about a “Can We Move Beyond Inadequate Awareness and Now Get Serious on Autism” Bill?

[Andrew Kavchak]

Hi Folks,

One of the strange things about human behavior, especially in the realm of politics, is how certain ways of thinking are considered OK in some circumstances, but not even considered in others.  For example, why is it that certain government approaches (which reflect a certain way of thinking) are expressed, promoted and undertaken to address certain health issues, but not other, most notably autism?

Last month was “autism awareness and acceptance month”.  My memory may be getting short, but I don’t recall any memorable speeches by MPs in the House, not even one related to autism by the popularly designated “national autism advocate” Mike Lake (incidentally, he recently re-tweeted a tweet by someone who thanked him for “advocating for those Canadians who need a strong voice” and apparently brings the lady who tweeted “to tears every time he speaks” – ironically, I also felt like crying every time I met Mike Lake or heard him speak, but for different reasons as previously outlined on this board).

However, this month is “Diabetes Awareness Month” and two speeches were made in the House yesterday.  One conservative MP made a statement and concluded by saying “Together, we can raise awareness and help eradicate this disease.”  Then a Liberal MP spoke and stated “lt is clear that Canada needs a national strategy to address the growing challenge of diabetes, a strategy like Diabetes 360°. I invite all members to join us tomorrow night for a reception to hear from leading researchers on groundbreaking new treatments, like beta cell replacement and islet transplants, to help Canadians living with diabetes. Canada gave insulin to the world, and if we work together, we can defeat diabetes.”

Imagine that….one disease, the treatment of which is already provided for under Medicare across the country, requires “eradication”, a “national strategy”, and “defeat”.  Yet, when it comes to autism, I cannot recall any MP on either the Liberal or Conservative side calling for a “National Autism Strategy” (certainly not when their party was the government), and one never seems to hear any MP speaking about the need to eradicate or defeat autism.

[Andrew Kavchak]

Hi Folks,

Every once in a while one comes across some interesting proposals that are recorded in the transcripts of what is said by our MPs in the House of Commons.  While some ideas sound really good in some contexts, one wonders why they are not considered feasible (or even worthy of mention in others). One example is what was said by one conservative member in the House yesterday (Monday, November 5, 2018).

“Addictions

<b>Mr. Glen Motz (Medicine Hat—Cardston—Warner, CPC): </b>

Mr. Speaker, communities across this country are grappling with proposals for supervised consumption sites in an effort to reduce the negative impacts of drug addiction and abuse. We all recognize the important public health benefit of keeping people safe and minimizing death, disease and injury, but there has to be room for different harm reduction strategies. I recently visited Vancouver’s Downtown Eastside and saw what was really happening first-hand. I talked to addicts, heard their stories and listened to what they said. This is a failed social experiment. It is a crisis that is not getting any better. While there, I met with members of the Odd Squad, a charity run by serving and retired police officers who volunteer their time to educate youth and the community about substance abuse, and more importantly, about approaches to avoid addiction in the first place.  Governments must ensure that appropriate funding is directed toward detox and treatment-on-demand facilities, plus organizations like the Odd Squad, to give hope to the hopeless. The human cost is far too high to refuse to consider altering the current course.”

The irony here is surprising.  For autism, a disorder that people are born with and did not acquire through any choice of their own, there was never any mention by any conservative MP (or Liberal or NDP for that matter) that “governments must ensure appropriate funding and the availability of autism ‘treatment-on-demand'”.  Yet, for drug addicts, it is worth fighting for and raising on the floor of the House.  I remember in grade 7 of my public junior high school that we had a class called “Health”. I remember two of the topics that took up a lot of class time.  One was sex and the problem of VD, and the other was drugs and the problem of addiction, etc.  Anyone who was in that grade 7 class and subsequently took drugs could not claim that their subsequent addiction was a surprise.  Nonetheless, I’m glad to see that there is a conservative MP who believes funding should be made available for “treatment-on-demand”.  But why should it be only for drug addicts?  Why not for kids who are born with a disorder like autism which can also be treated?  Huh?

[Andrew Kavchak]

Hi Folks,

A few recent developments and thoughts to share…

The autism community needs services, so it is entirely normal and appropriate that some people would make a living while providing much-needed services to the community.  However, when people who assume the positions of “executive director” of an “autism charity” are criminally charged with “theft, fraud and forgery”, one is bewildered by how some people can take advantage of other people’s misfortunes to (allegedly) criminally line their pockets.  The CBC story about the events in PEI is here:

https://www.cbc.ca/news/canada/prince-edward-island/pei-stars-for-life-smith-court-1.4882569

Speaking of deception, did anyone catch the federal government’s press release of last week relating to spending on autism? It is available here:

https://www.newswire.ca/news-releases/health-minister-announces-funding-for-national-information-network-on-autism-698211791.html

The press release, dated October 22, 2018, includes the following statement: “Today, the Honourable Ginette Petitpas Taylor, Minister of Health, announced more than $10 million for the Pacific Autism Family Network and the Miriam Foundation to develop the Autism-Intellectual-Developmental Disabilities National Resource and Exchange (AIDE) Network, a national website and online resource centre for Canadians.”

Good grief!  Can you believe that?  The allocation of the same funding was previously made when the federal government’s 2018 budget was announced in February!  In fact, the press release on the Miriam Foundation website of February 28, 2018, stated at the time that the government was investing the funds in the present tense (government “invests”).  See:

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

There is absolutely nothing new in this most recent repetition.  However, it is “Autism Awareness and Acceptance Month”, isn’t it?  So the government has to make an announcement, doesn’t it?  And since probably no one remembers the previously announced budget allocation of eight months ago, why not recycle and rehash the same stuff over and over again and make it sound like the government is engaged, doing something, and deserves to be re-elected.  It is absolutely stunning that eight months after the initial announcement the government would shamelessly “re-announce” it, and not even provide a link to the website in question or even a status update on its “construction”.  Instead, the press release is entirely future tense oriented “will provide”, “will support”, “will give”, “will see” etc.  And the quotes of the two primary recipients of the money provide no information either about when or where this reliable, quality and trusted resource “will be” available.  Just be patient and wait some more.

On a related note, I wonder whether there are any politicians who “advocate” for autism who have generated something like an “autism manifesto” which would outline the public policy objectives that they would like to see implemented, whether it is the issuance of a government declaration, or implementation of some sort of government initiative or program, some sort of budget allocation, or even legislative enactment. There are a number of politicians, both provincially and federally, who have over the years claimed to represent and promote the interests of the autism community.  Yet, I recently received a message from a fellow parent who wishes to remain anonymous, who informed me that he sent a message to Mike Lake asking him what specifically does he advocate for and inquiring about the nature of the discussion that he recently boasted about on his Twitter account regarding his (Mike Lake’s) recent meeting with Ontario government MPPs in which they supposedly discussed what the provincial government could do to improve the lives of people with autism. This fellow parent informed me that he sent emails to both the provincial MPP who issued the original tweet about the discussion with Mike Lake, and Mike Lake himself, to ask “what specifically did you discuss?” From the Ontario MPP’s office there was no acknowledgement of receipt or response.  From Mike Lake’s office there was an email suggesting that Mike Lake would be willing to talk on the phone, but the request for a response in writing was ignored, apart from a link to a Global News story about Mike Lake’s efforts to get funding for his “Canadian Autism Partnership” project.

What this means is that if our community is interesting in knowing exactly what politicians who claim to be our supporters actually stand for, we have to collate the relevant passages from any speeches, letters or descriptions of actions taken (e.g., tabling a Private Members Bill, etc.).  While in some cases, such as Senator Munson, there is an accumulated body of speeches and reports that occasionally make reference to specific public policy issues, there are other politicians who make such exercises much easier because in fact they rarely say (or write) anything concrete or specific about what governments should actually do (that’s what public policy is), notwithstanding their frequent speeches about “autism awareness” and acquired reputations.  Perhaps it is time for the community to ask supportive politicians to put in writing what they support and what they are willing to fight for. How can one understand a politician who says “I am an advocate for your cause (vote for me!)”, but is not willing to put in writing a meaningful (comprehensive) statement of what they support and what they advocate for?  Is that misrepresentation perhaps in the eyes of some people? Perhaps it would be worthwhile to ask these advocate politicians to draft an autism manifesto of sorts and attach their name to it.  That way we can have a better idea of who supports what.  And if the “manifesto” is full of “raising awareness” and contains no reference to any public policy improvements, then we at least will have a better idea of who really stands for action and who does not. Maybe that’s why some politicians don’t want to put anything in writing, not even a few bullet points in an email!

[Andrew Kavchak]

Hi Folks,

Here’s an update and an urgent call out to all those who are able to attend an “autism round table”  at the Fraser Heights Community Centre on November 15 between 7 p.m. and 9 p.m.

Here’s the background: as you may recall, the Liberal Party of Canada held a policy convention in 2016 and one of the resolutions that was approved was a resolution to include ABA treatment under Medicare.  The resolution was approved and the wording can be found here:

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

The Liberal Party of Canada has a “policy committee” and last year they set up a working group to draft a report on its implementation.  I saw a draft of the report earlier this year and thought it was weak and “politically correct”.  I also thought it deviated from the resolution too much for my liking and that it was not really a document that was likely to “enlighten” very much those who may be unfamiliar with autism. Nonetheless, the report was given to Ken Hardie, MP, who is apparently the Liberal Party’s “caucus liaison” with the policy committee.

About a month ago I wrote to Ken Hardie and asked him “what’s happening with the report?”  I received no reply so I followed up and asked the question again.  Well, guess what?  I got an answer!  This is what he wrote to me today:

“Here’s a quick status update:  the Working Group report has gone to the Liberal Party’s national platform committee, which will look at ways to get the issue reflected in the next campaign.  As it happens, I am the liaison between the Party’s platform committee and the national caucus, so I intend to push the issue to get something included.  While the government’s measures so far have been helpful, they have only scratched the surface when it comes to financial, therapeutic and respite relief for families.  I have to say that the magnitude of the issue is staggering, and I’m not sure how far toward meeting the intent of the 2016 resolution we’ll be able to go.  As such, it might be wise to consider options.  I’ll be holding a round table on autism at the Fraser Heights Community Centre from 7 to 9 PM on November 15^th to get input and advice as to what measures could improve things for families.  I hope you can attend and bring your thoughts.”

So the new “pressure point” for lobbying is at this “national platform committee” which is apparently forming an election platform for next year’s election.  I’m nowhere near the Fraser Heights Community Centre, but I hope that all of you who are able to go will try to attend and deliver a clear message: the policy resolution was good, it was approved, we want it and our kids need it.  Please incorporate the resolution on a “as is” basis into the party’s election platform.

While Mr. Hardie seems to be under the impression that the government’s measures to date “have been helpful”, I don’t share that opinion as I don’t know how the funding of a ghost website (at least, one that I have been unable to find whenever I searched for it) is helpful to anyone in our community.  Similarly, I am not sure what he is referring to when he makes reference to “scratching the surface” when it comes to financial, therapeutic or respite relief for families.  In fact, I don’t think I have come across any Liberal Party statement that ever make reference to those three things.  It is nice for him to recognize that the magnitude of the issue is staggering, but if the Party is going ahead with a “National Pharmacare Program”, then please don’t tell me again that “autism is different”.  You know what they (used to) say….”when the going gets tough, the tough get going”.  Are we to interpret Mr. Hardie’s warning about the staggering proportions of our community’s problem is such that we should not expect anything?  If so, the MPs in the Party are obviously not “tough enough” and perhaps it is a good thing there is an election coming up!  We need tough people to represent us, not the excuse seekers.  Good luck to all those who attend and speak up!  May the Force be with you!

[Andrew Kavchak]

Hi Folks,

Here we go again… another example of how autism “is different” and necessarily necessitates “a different” approach than practically any other problem. In other words, from some politicians, the message is that they can do something for other causes, but when it comes to autism, their hands are tied.  One example that I’ve previously discussed is the way the federal Conservatives (especially autism “national advocate” extraordinaire Mike Lake) would say that autism “is provincial”, but when it came to a national securities regulator, even though the constitution is pretty clear (it’s a section 92 responsibility) which has been affirmed by a century’s worth of jurisprudence and a recent Supreme Court of Canada decision, the federal Conservatives still went ahead and tabled a Bill to create a National Securities Regulator before the last election (and this in spite of opposition from a number of key provinces!).  In other words, where there is a will, there is a way.

As you all know, every day in the House of Commons the MPs have an opportunity to stand up before Question Period and have one minute to make a “statement”.  They love doing this because they can copy it into their householders and parade it as proof that they are concerned about an issue and take a stand or something.  Mike Lake always stands up on World Autism Awareness Day and makes a statement.  It always has to do with his son, and how much his family loves his wonderful son. I’ve often remarked that his speeches on those occasions are totally devoid of any public policy discussion. Well, contrast that with the statement he made yesterday on “World Polio Day”.

Hansard, House of Commons, Wednesday, October 24, 2018:

“World Polio Day

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

Mr. Speaker, today is World Polio Day, a day to shine a spotlight on international efforts to end polio. On the subject of global polio eradication, Nelson Mandela said it best, back in 1996: “[O]ur aim is not merely to reduce the numbers afflicted – it is to eliminate the disease completely. No country can be safe from this disease until the whole world is rid of it.” Today, we are closer to that goal than ever, and Canada has played a leading role. In fact, three Canadian prime ministers, Jean Chrétien, Stephen Harper and the current Prime Minister, have been recipients of the Rotary Foundation’s Polio Eradication Champion Award. This is a testament to Canada’s enduring commitment to this fight, working with equally dedicated partners, like Rotary International, the Bill and Melinda Gates Foundation, Global Citizen, UNICEF and RESULTS. Here, it is all too rare for us to find common ground, but in uniting around the efforts of the Global Polio Eradication Initiative, we have done so, and the world is a better place for it. Now we need to finish the job, once and for all.”

Interesting, eh?  No discussion of any individual victim of polio and what a wonderful person he or she is.  No discussion of the need to accept or raise awareness.  No discussion of Mike Lake’s life journey learning to live with the disorder/disease in a family member or friend or stranger. No discussion of his or his family’s evolving perception of the disorder and its impact on people affected by it.  Nope. Instead, it is repeated references to ending polio, eliminating polio, eradicating polio, and getting the world “rid of it”. It is about our government being champions in the global eradication effort and our PMs being recognized for their efforts in that regard.  There is an “initiative” and we all, in a non-partisan manner, unite around the effort.  The politicians have done it before on this file, and will continue until the job is finished “once and for all”.

Just as a reminder and to put some contrast and context in this, take a look at Mike Lake’s last “Autism Awareness Day” statement from the Hansard of Wednesday, March 28, 2018:

“Autism

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

Mr. Speaker, April 2, World Autism Awareness Day, will mark 20 years since my son Jaden’s diagnosis. Helen Keller once said, “Life is a succession of lessons which must be lived to be understood.” These words are very powerful for me. For example, two years ago, Jaden and I had a great day speaking to 15,000 kids at WE Day in Saskatoon. Our flight home was delayed, and suddenly Jaden got really sad. Tears streamed down his cheeks. We found a quiet place at an empty gate, and I just held him, my 20-year-old son, for half an hour, until he felt better. I reflect a lot on what I learn from Jaden. Though he struggles to articulate why he feels what he feels, he expresses how he feels very openly and clearly without words. For Jaden, much more important than the words I speak is the simple fact that I am there. The life we live is never exactly the life we expected, but the unexpected life is where the real learning takes place.”

Instead of talking about the urgent need to engage in an “initiative” (and even participate on a global scale) to treat and ultimately find a cure for autism, and to recognize those who have championed the cause and made some meaningful contribution, Mike Lake talks, as usual, about: Jaden, life being a series of lessons, powerful words for him, a specific episode where Jaden was crying, holding his son, feeling better, reflection, and how Jaden expresses his feelings. Yes indeed, life is never as we expected, and I can confirm that political speeches from some sectors have never met my expectations either.  Of the numerous things that I find somewhat perplexing about the contrast in Mike Lake’s speeches regarding these health issues, is the reference in the polio speech to uniting around a cause.  Why not engage in the same non-partisan behavior in relation to autism?  Instead, as I’ve documented on this board so many times over the years, the criticism of others (e.g., for not voting for his motion) or the silence (e.g., not commenting in the House on the lack of any meaningful provisions for autism in the budget) all have deeply political and partisan traits.  One would have to be naïve to not recognize that the MPs always calculate and include the partisanship factor when determining how to deal with any autism issue.  It is at least a relief to know that should polio ever erupt into an epidemic in Canada in the future that we may expect some cooperation among our elected representatives.

[Andrew Kavchak]

Hi Folks,

A speech was made about autism in the House yesterday (Oct. 19, 2018). It makes reference to “professional race car driver”, “reality simulator” and “first hand experience” of what it is like to live with autism. Here’s an idea….what if the Autism Societies canvassed the communities across the country to see if there were any autism families that would be willing to have interested VIPs (e.g., politicians, government officials, public policy influencers, etc.) visit their homes and get a glimpse of what a typical day with a member of the family on the spectrum is really like (tantrums and all, as opposed to racing cars)?  Would that not provide an “eye-opening experience” that would raise awareness among those who are in a position to do something about the challenges faced by our community?

For those who may be interested in this story, there is a video available here (http://thenewswheel.com/meet-austin-riley-canadas-first-autistic-racecar-driver/).  It is nice to know that some families are in fact able to find that “niche” at which their child is good, and able to help their child excel at that activity.  Good luck with the professional car racing career. But getting back to the “reality autism experience”, my concern with speeches like the one below is that the politician makes reference to “unforgettable and eye-opening experience”, but in what way?  What was the “take away” or “lessons learned”?  That everything would be all right if kids with autism were just given a chance to follow their dreams? Or is the unforgettable experience one that has prompted the politician to add autism public policy issues to her agenda and “to do” list?  Is there anything specific that the autism community can follow up with the politician about to get some momentum going in terms of government initiative on the file?  Regrettably, it does not sound like it.  So was this another “Rainman” story which can be expected to prompt strangers in the future to tell me that I’m so lucky my son has autism?  A truly “unforgettable” experience?

“Autism

Ms. Jennifer O’Connell (Pickering—Uxbridge, Lib.):

Mr. Speaker, I rise today during Autism Awareness Month to recognize the Riley family, who are members of my community, for their advocacy of autism awareness. Austin, a three-time racing champion, is the first professional Canadian race car driver with autism. It is through sharing his story that Austin has been empowering those with autism to follow their dreams, while encouraging others to learn more about it. In addition to sharing his story, Austin and his family have been touring the country, sharing the autism reality experience, a reality simulator that provides a first-hand experience of what the world is like living with autism. Having personally taken part in this simulation, I can say it was an unforgettable and eye-opening experience. I would like to thank Austin, Jason and Shane Riley for this opportunity and their continuous advocacy and efforts to make Canada and our communities a more inclusive place for us all.”

[Andrew Kavchak]

Hi Folks,

Well, we’re closing in on the end of “Autism Awareness and Acceptance Month” and I’ve been trying to find any statements that politicians have made on this lengthy occasion.  In particular, what has Mike Lake stated?  So many people in the community seem to regard him as a leader, champion and super advocate extraordinaire, but what has he said (never mind what has he done)?  Well, I rarely follow up to check his Twitter postings because I find such social media platforms superficial and a waste of time, but since I could not find anything that he said in the House of Commons so far this month, I thought he might have referred to something in his Twitter thingamajig. Well, guess what… on October 17 he “retweeted” a tweet by Stephen Lecce, an Ontario MPP who is the Parliamentary Assistant to the Premier and Minister of Infrastructure and the Deputy Government House Leader. The tweet contained a picture of the two of them together (with two other MPPs) and stated: “Always inspired by Mike Lake’s story & leadership for Canadians with developmental disabilities. Great to chat at Queens Park … on how our government can meaningfully improve the quality of life of Ontarians living with autism.”

Wow.  My recollection from my first meeting with Mike Lake after he was first elected in 2006 was that he refused to table the petition I gave him requesting Medicare coverage for autism treatment and that he subsequently was interviewed by Sandie Ronaldo of CTV on the W5 program for a segment on autism policy in which he bluntly stated that autism is a provincial jurisdiction matter and not one that the federal government can or should concern itself with.  Leaving aside the reference to “Mike Lake’s story” and the absence of any reference to his autistic son’s “story”, what did this “inspiring leader” say and discuss during this “chat” with the provincial government politicians?  What are Mike Lake’s ideas on how the government of the largest province in the country “can meaningfully improve the quality of life of Ontarians living with autism”?  Surely I can’t be the only person who would like to hear an elaboration of the discussion that took place.  Where can one find this information?  Is it secret?  If so, why?  Why won’t Mike Lake post his ideas….besides proposing the creation of a “partnership project” after his government’s nine years in office have expired and the idea does not have a chance to get approved given that the Liberals are just as partisan on such matters as the Conservatives? I have written to Stephen Lecce to inquire about the content of their discussion, but I am not holding my breath to get a reply (at least, not a meaningful one).

Speaking of politicians who don’t bother replying…..on September 1 (about six weeks ago) I posted a message about Ken Hardie, the Liberal MP, having received a copy of the Liberal Party Policy Committee’s report regarding the Party’s resolution that was adopted in 2016 concerning the incorporation of autism treatment under Medicare.  I was told by the former chair of the policy committee that Ken Hardie was the “caucus liaison” person who now had the report and that he was apparently very supportive.  Well, I wrote to Mr. Hardie and asked him about the status of the report and what are the next steps.  To date, no reply.  None.  So today I wrote a “follow up” message.  I wonder what happened to this apparent “support”…

[Andrew Kavchak]

Hi Folks,

A Senator spoke up in the Senate yesterday about autism.  You may recall that Senator Bernard was the Senator who spoke at an “awareness” rally two years ago on Parliament Hill.  When she mentioned the fact that it is now time to move beyond “awareness” and to see some “action”, no one clapped (I was taking notes!) but when she announced that she was going to read a poem about autism, the crowd went nuts with applause.  I wonder if the Senator got the impression that the community does not want any “action” and is fine with poems and speeches about how nice everyone is.  As the transcript of her speech yesterday indicates, action is not on the agenda….just compliments for those in the private sector who are running enterprises that provide a much-needed service to our community. Perhaps the time has come for the Autism Societies to replace “Autism Awareness Month” with “Government Action on Autism Month” or something like that to see if that may prod the slow pokes to pay attention and do something.

Senate Debates, Tuesday, October 16, 2018.
<h2 id=”12″>Autism Awareness Month</h2>
<b>Hon. Wanda Elaine Thomas Bernard: </b>Thank you, Your Honour. There is certainly a lot of excitement in the chamber today with the five new senators, and I welcome them all. I hope that I can get through this speech without the distraction of all the excitement.

Honourable senators, I rise today in honour of Autism Awareness Month to pay tribute to Dr. Angela Fountain & Associates Summer Camp. This summer camp, located in Oshawa, Ontario, is on a 60-acre farm. It is an amazing combination of a children’s mental health program with a farm that creates an accessible and fun learning environment for children with unique mental health challenges and exceptionalities, such as autism, attention deficit hyperactivity disorders and other non-neurotypical issues.

Dr. Fountain’s camp has stables, a swimming pool, playgrounds, sports fields, vegetable gardens, meadows and a forest. The children can spend time with the horses and other small animals. Available activities for campers include artisan crafts and seasonal farm activities. All of these valuable summer camp experiences are available alongside access to the highly trained behaviour intervention team of Dr. Angela Fountain and a full multidisciplinary children’s mental health team.

This summer, my two grandsons Damon and Gavin attended the Dr. Angela Fountain & Associates Summer Camp. They had a great summer at the farm, which gave our family peace of mind knowing the boys were receiving the support they needed while having fun and exploring during their months off school.

I inquired at another summer day camp to see what it would look like for our two grandsons with exceptionalities to attend their camp. The response was one of confusion. The person that I asked had no idea what supports were in place for children who require additional support for a successful camp experience. There are actually very few options in this country for families with children with exceptionalities to have a summer camp experience that actually meets their needs.

The support team at Dr. Fountain’s camp are exceptional in providing an enhanced level of support to the campers and creating an accessible environment for a wide range of needs.

The children who attend this camp connect with nature through education and exploration. The program also provides these youth support in developing self-awareness, self-regulation and important relationship-building skills.

Join me in thanking Dr. Angela Fountain and Associates Summer Camp for providing such an important program. I encourage you, colleagues, to become more aware of innovative youth programs as we mark Autism Awareness Month.

 

[Andrew Kavchak]

Hi Folks,

After taking a break for Thanksgiving, Parliamentarians are back in Ottawa.  Below is an exchange that took place in the House of Commons on Monday between a Liberal backbencher and the Liberal Minister of Health.  Usually these kind of questions to Cabinet Ministers from their own parties are real easy slow pitches that are even easier for the Minister to bat and score a run. This exchange is a classic example of the window dressing “show and tell” games that are meant to put on the record that a problem is recognized and the reigning government is responsive and has solved the problem.  The check list can be checked off (done!).  But has any autism group tweeted or posted about this exchange and how we are tired of having our serious issues continuously ignored and swept under the rug….even in the middle of “Autism Awareness and Acceptance Month” and just days after the PM himself visited a new community centre? Is this all we can expect from the federal government during this “awareness” month?  To my knowledge, neither Mike Lake nor any other MP who might have a relative with ASD has yet spoken in the House during this “awareness” month. Perhaps they are not aware of it.  Or perhaps Mike Lake’s policy is to restrict his “awareness” speeches in the House to “Autism Awareness Day” in April.  Funny…..a day is only 24 hours….but the month would provide Mike Lake with 30 days in which to engage in activities to raise awareness.  Sometimes one gets the feeling that there are limits to how much awareness some people can tolerate or are willing to promote.

Monday, October 15, 2018 – House of Commons

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

Mr. Speaker, October is Autism Awareness Month. It is an opportunity to learn more about autism and how we can help people living with autism and their families and friends. Autism spectrum disorder is a condition that remains misunderstood by many people. Can the Minister of Health tell the House about the measures the government is taking to raise awareness and help families?

<b>Hon. Ginette Petitpas Taylor (Minister of Health, Lib.): </b>

Mr. Speaker, I thank my colleague from Châteauguay—Lacolle for her important question. Our government recognizes that autism spectrum disorder has a profound impact on Canadians and their families. That is why, in budget 2018, we invested more than $20 million in helping families and launching new community initiatives. We are also making major investments in research to better meet the needs of Canadians with autism spectrum disorder and their families.

[Author]

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