[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,

Every once in a while one comes across a media story that makes one wonder…have we not seen this before and is the fate of the world destined to be one in which we embark on a merry-go-round never to be able to get off the endless spinning in circles?  How many times must our community play “snakes and ladders” and roll the dice only to hit the very first snake over and over again?

Case in point….the new Ontario government (elected last year) announced in February that they had conducted consultations and heard the voice of the autism community and were going to change the Ontario Autism Program (OAP), etc.  As we know, the proposed changes caused such a backlash from the community that the government pressed “pause” and announced a new round of consultations that are supposed to come to an end shortly with the next round of anticipated changes to the OAP to be announced around the end of July.

Well, not to be outdone, the NDP in Ontario (the opposition party) is now conducting their own consultations with a view to issuing a report on the needs of the autism community.

https://blackburnnews.com/london/london-news/2019/05/28/ndp-compiling-report-autism-needs-ontario/

Good grief!  Does this mean that the community’s lobbying over the past two decades has been a complete waste of time?  Has no one heard the message(s) and remembered or noted what has been asked? This must be a classic example of leadership failure.  The autism community should have some recognized leaders who have drafted a simple self-explanatory document about the needs of the community.  Anytime a new (or old) politician wakes up and asks “what does the autism community want?”, the “Autism Manifesto” document could (should) be tabled in a flash, so that there is consistency, no confusion, and no need to go over and over again trying to get to first base.  This incessant “re-start” of consultations appears to be a remarkable exercise in delay, confusion and paralysis.

As an example of the kind of document that the autism advocacy organizations could produce please see this one below that was recently distributed to  a number of autism organizations and every MPP in Ontario by one individual parent who is not part of the autism establishment.

Dear Members of the Autism Community,

The Ontario government’s autism consultations are ongoing, but the window of opportunity to submit feedback will be closed soon.

If you believe that autism is a neurological disorder and that ABA autism treatment for youth with autism is a health issue that should be the responsibility of the Ministry of Health and that the treatment should be covered by the Ontario Health Insurance Plan (OHIP – Medicare), then please consider distributing the message below to all your contacts in the community and encourage them to send the message to the government consultation’s email and the Premier, Ministers, and every MPP.   The larger our collective voice, the better. Please join the effort and spread this message around.

Global News recently reported on one of the town hall telephone consultation exercises and several parents called for the Minister of Social Services to resign and for OHIP to cover the cost of Medicare.  Instead, we can leave Minister MacLeod where she is, but insist that the Ontario Autism Program be transferred to the Ministry of Health.

https://globalnews.ca/news/<wbr />5289235/lisa-macleod-ontario-<wbr />autism-consultations/

Ontario Autism Consultations – the last date to mail in submissions is May 31 and the government expects to announce “enhancements” to the Ontario Autism Program at the end of July. There is no time to waste!

http://www.children.gov.on.ca/<wbr />htdocs/English/specialneeds/<wbr />autism/consultations.aspx

Please join with others in sending the message below to:

1) Ontario Autism Consutlations email at: autismconsultations@<wbr />ontario.ca

2) Premier Doug Ford: doug.ford@pc.ola.org

3) All the MPPs in the Ontario Legislature: https://www.ola.<wbr />org/en/members/current

<p align=”center”><b>The Ontario Health Insurance Plan (OHIP) Must Cover Autism Treatment (ABA)</b><b></b></p>
<p align=”center”><b>Children with autism</b><b> should be able to access treatment using an OHIP card</b></p>
<p align=”center”><b>(and not their parents’ credit card)</b></p>
<i>Premier Ford, you can end the discrimination against autistic children with <b>two</b> <b>steps</b>:</i><b><i></i></b>

<b> #1 – Transfer the Ontario Autism Program (OAP) to the Ministry of Health </b>

It is critical that responsibility for Ontario’s autism treatment program be moved to the Ministry of Health from the Ministry of Community and Social Services (MCSS).  Autism is a neurological disorder.  <i>Autism treatment is a health issue, not a social services issue</i>.  

<b> #2 – Have OHIP cover the costs of the Ontario Autism Program (OAP) </b>

The costs of autism treatment in Ontario should be covered by OHIP. Since the 1980s studies have demonstrated that due to the plasticity of the brain early intervention treatment helps children with autism develop to their potential and that as many as half can be integrated into the school system and function at the average level. Applied Behaviour Analysis (ABA) treatment for autism is evidence-based and constitutes the core healthcare need of children with autism. It is an investment that reduces support costs over the lifetime. All other healthcare services are covered by OHIP pursuant to the principles enshrined in the <i>Canada Health Act</i>. There is no reason why ABA treatment for autism, whether provided by direct service or direct funding, should be excluded from Medicare coverage.

<b>A Hospital that Delivers ABA Autism Treatment</b>

The MCSS has delivered the OAP by contracting it out to regional service providers.  In Eastern Ontario, the provider is the Children’s Hospital of Eastern Ontario (CHEO).  The argument that the <i>Canada Health Act</i> and Medicare should only apply to services provided by a doctor or a hospital and that autism treatment is not delivered by either is clearly false. The current shell game in Ontario deprives children with autism from OHIP coverage for their treatment. Does the MCSS have responsibility for the treatment of any other medical condition? No other disease, whether neurological or otherwise, is subject to such discrimination. 

<b>Access to Federal Funds to Help Pay for Autism Treatment and a National Autism Strategy</b>

By transferring the program centre for the OAP to the Ministry of Health and extending OHIP coverage to the program, federal funds to help pay for the program would be available from the <i>Canada Health Transfer</i> and any additional “Health Accords” that may be renegotiated in the future. Recently a wave of dissatisfaction with provincial autism treatment programs has resulted in increasing calls for the federal government to work with the provinces to develop a National Autism Strategy.  A key component of any such strategy should be the inclusion of autism treatment under Medicare.

<b>Impact on Families in Ontario and Across Canada</b>

Premier Ford, if you make these two things happen you will prevent more families, like mine, from having to empty their bank accounts, get second and third jobs, sell their valuables, re-mortgage their homes, face bankruptcy, etc. to pay for autism treatment for their children. You will also save many marriages that will otherwise end in divorce from the stress.
<p align=”center”><b><i>Not only will making these two things happen help children and families in Ontario, such a display of bold leadership will establish a model that will likely influence similar changes in policy across the country.</i></b></p>

 

 

[Andrew Kavchak]

Hi Folks,

So here is a tale of two politicians….

One gets elected to the House of Commons, the other gets appointed to the Senate, but they both are part of the law-making and government policy-making machine of the federal Parliament.

The Senator learns of the lack of healthcare for kids with autism shortly after becoming a Senator and dedicates a part of his energy and resources to advocating for a National Autism Strategy.  Recently, he spoke at McMaster University in Hamilton about “Why Canada Needs a National Autism Strategy”.

https://dailynews.mcmaster.ca/events/why-canada-needs-a-national-autism-strategy-a-conversation-with-senator-munson/

To most of us in the community, this kind of advocacy is what we expect from our politicians who become champions of our cause.  Obviously the Senator is not a member of Cabinet, so he’s making efforts behind the scenes and in front of the scenes to promote the best interests of our community.

In contrast, the elected MP has a son with autism and despite having been in the House for over a dozen years, including on the government side for a substantial portion of it, his involvement is more of the … non-political and “motivational speaker talk” type of chit chat about his family experiences and how we can all make the world better for people with autism by changing….our attitudes (“….speaks to Jaden’s inspiring story to change the way we thinking [sic]…”). He is now scheduled to speak at the University of Waterloo about his “autism adventure” that unfortunately is likely to be completely devoid of any meaningful discussion of autism public policy in this country and what can be done to improve the situation.

https://ticketfi.com/event/3189/expect-more-an-autism-adventure-with-guest-speaker-the-honourable-mike-lake?fbclid=IwAR18u8sjYtLcFZG3_bWUtnOVacPvuA7q_ioZvwup-wHvi6JVSx4xGT3qAPQ

So is this what the people of his riding elected him to do with all the powers and privileges of an MP?  Give autism pep talks and avoid any public policy stuff?  Geez, what a waste.

[Andrew Kavchak]

Hi Folks,

Two interesting things of note.  First, as part of its current round of consultations, the Ontario government organized some town hall conference telephone calls.  Global news just reported on the one from last Thursday at:

https://globalnews.ca/news/5289235/lisa-macleod-ontario-autism-consultations/

It appears that at least one parent made the claim that autism treatment should be covered by the Ontario Health Insurance Plan (OHIP – Medicare).  Another parents suggested that the Minister of Social Services should resign.  There is of course another solution that achieves both of these objectives: transfer the autism treatment program from the Ministry of Social Services to the Ministry of Health and extend OHIP coverage to include autism treatment…..new Minister, new department, new financing….done.

Second, there is an interesting and disturbing trend in the U.K.  It appears that more and more kids with autism are ending up in “mental hospitals”.

https://www.telegraph.co.uk/science/2019/05/19/number-children-autism-learning-problems-locked-mental-hospitals/

[Andrew Kavchak]

Hi Folks,

Just a further update to my last post about an MP who tabled a petition in the House of Commons calling for a national autism strategy.  The petition was tabled last Friday and on that day the MP tweeted out a tweet (message) about how he tabled the petition.

Well, as anyone who has been in the trenches of autism policy lobbying and political agitation knows, it is not just bureaucrats and politicians who are primary obstacles in getting help for our kids.  There are also many people in the autism community who oppose any attempt to get better and improved access to ABA treatment for our kids.  One of these groups or sectors within the autism community is that which describes itself as “self-advocates”.  I’ve been at the receiving end of some of their remarkably bizarre missives and often wonder how these people have managed to make themselves considered to not just be “stakeholders”, but authoritative speakers for those who have autism and are non-verbal?  It is amazing that when the Senate organized a number of autism events last November, they specifically had a roundtable discussion which included a number of self-advocates.  Similarly, whenever the “Autism on the Hill” folks have an awareness rally, they always include these super high functioning “self-advocates” on the list of speakers.  Unfortunately, I’ve never heard any of these speakers even address the need for treatment for those who are non-verbal and low functioning.  Never.  Not surprisingly, I did hear Mike Lake at one of these rallies praise the “self-advocates” and emphasize in his comments that the “self-advocates” are the ones that we should all pay attention to because they apparently know and Lake implied that they can effectively represent and speak for all those with autism.

Well, I beg to differ on that point.  And here’s an example of why….

Last Friday after the MP who tabled the petition tweeted out a message about his having done so, a group which claims to be “Ontario’s first autistic self-advocacy group” (I won’t name the group for obvious reasons) posted the following tweet in cyberspace:

“Every autistic self-advocacy organization across Canada OPPOSES this petition. Autistic people were NEVER consulted on this proposed “strategy”. Many petition backers support harmful autism pseudoscience. if you care about autistic people, please DO NOT support this petition.”

Get it?  According to this group:

(1) every autistic self-advocacy organization opposes this petition.  For MPs who would like to have as many arguments as possible to do nothing and preserve the status quo, these people are really useful.

(2) Autistic people were never consulted.  Well, the CASDA folks proposed a blueprint for a National Autism Strategy, but I did not see in the main blueprint document any indication of where the ideas and content of the blueprint came up.  In other words, it is not clear that anyone was consulted.  However, when CASDA was working on the business plan for their Canadian Autism Partnership Project a few years ago, they had a “Canadian Autism Partnership Project’s Self-Advocate Advisory Committee”.  In other words, CASDA certainly gave the self-advocates a role in the development process and even made them advisors.  Was there a corresponding “Non-Verbal and Low-Functioning Advisory Committee”?  I doubt it!  However, one of the things that CASDA’s blueprint does say is that the government should engage in consultations.  Apparently that’s not good enough now for this Ontario self-advocacy group.

(3) According to these guys, ABA is harmful and pseudoscience.  Anybody who is familiar with the studies that have been done on ABA and autism since Ivar Lovaas’ ground-breaking study in the late 1980s knows that this is not pseudoscience and helping people who are dependent work their way towards becoming independent and having a better quality of life is hardly “harmful”.

(4) And then there is the suggestion that if we support a movement to help our kids get access to treatment, then we don’t care about autistic people.

The new generation of activist parents who have started to get their feet wet recently are encountering this kind of opposition now and it will be interesting to see how they respond.  Will they merely try what was done in the past (e.g., attempt to reason with them, ignore them, bring them in the tent and give them the microphone, etc.) or will there be any different approach?  So far, my impression is that these people have been incredibly successful at establishing a sense of credibility and influence among some people in Ottawa (e.g., Mike Lake and others mentioned above) and will always provide those politicians and bureaucrats who don’t want to change the status quo with the excuse they use to do nothing.

If there are any high-functioning people with autism who genuinely appreciate the value of ABA and who believe that those who are low-functioning should have better access to it, it would be nice if they would form a group of their own called something like “Ontario self-advocate autistics for ABA” and challenge the anti-ABA crowd and point out where their arguments are bogus, etc.  Who knows?  Maybe one day…

 

 

 

[Andrew Kavchak]

Hi Folks,

Well, a petition was tabled in the House of Commons requesting the government to take some action relating to autism and develop a strategy.  I wonder why Mike Lake, the MP who is often described as an autism advocate, did not table this or other similar petitions.  I am not aware of his having tabled any such petition, although it is possible that he did but I did not see it in the transcripts.  But I can tell you this….when he was first elected I had a meeting with him and gave him some signed pages of a similar petition and he looked at it and gave it back to me and said he would not table it.  To date, he’s the only MP I ever approached with this request who has rejected it.  Well done Mr. Arya.

From the Hansard of Friday, July 17, 2019:

“Petitions

Autism and Special Needs

Mr. Chandra Arya (Nepean, Lib.):

Mr. Speaker, I would like to present a petition signed by 5,000 parents. It calls for a national autism and special needs strategy in the presence of many of the parents today. Across Canada, services for about 500,000 people with autism spectrum disorder and other disabilities remain inconsistent, depending on the provincial or territorial jurisdiction. Supporting an individual with ASD is beyond the financial means of most Canadians, and our school systems

provide little assistance for those currently in schools and those transitioning into adulthood. Hence, we need a national autism and special needs strategy.”

[Andrew Kavchak]

Hi Folks,

Well here’s an interesting exchange about the wisdom, understanding and compassion of the Department of Extortion, oops! I mean the “Canada Revenue Agency”.

House of Commons Hansard, Thursday, May 9, 2019:

“Taxation

<b>Ms. Cheryl Hardcastle (Windsor—Tecumseh, NDP): </b>

Mr. Speaker, the CRA claims that the majority of mental impairments are temporary, including autism, bipolar disorder and schizophrenia. In fact, these are life-long conditions. They are severe and prolonged, yet the CRA still expects these individuals to reapply for the disability tax credit. Rather than gouging vulnerable people and their families, will the minister just commit to correcting this unconscionable policy immediately?

<p class=”floorlanguage”><b>Hon. Diane Lebouthillier (Minister of National Revenue, Lib.): </b></p>

Mr. Speaker, we recognize that living with a disability can have a major impact on the daily lives of those affected and their loved ones. That is why we put in place measures to make the disability tax credit more accessible, especially by simplifying the form and allowing nurse practitioners to certify their patients’ forms.    The government reinstated the disability advisory committee, which was dismantled by the Conservatives in 2006, in order to give people with disabilities a strong voice in their dealings with the agency. We look forward to the committee’s recommendations.”

[Andrew Kavchak]

Hi Folks,

While Ontario has generated much of the discussion in the media lately about access to treatment, here’s an interesting story about the current state of affairs in Saskatchewan.

https://www.cbc.ca/news/canada/saskatchewan/sask-autism-funding-1.5128744

It appears that the Saskatchewan government used to give families with kids that had autism $4,000 a year (up to age six) to pay for treatment.  Apparently, the government of Saskatchewan recently increased that amount to $6,000 a year, and maintained the age six cut-off.  Parents are asking the government to extend this beyond age six and apparently the government is considering it.  How much therapy does $6,000 a year buy? In Ottawa, based on the recent fees announced by the Children’s Hospital of Eastern Ontario (CHEO), that would be less than two weeks’ worth (and the last time I checked there were 52 weeks in a year).

And so what is CASDA’s blueprint for a “national autism strategy” proposal to deal with this shortfall when it comes to access to treatment?  More tax credits.  I keep checking the media for letters or articles or quotes from people in the community expressing support for this specific proposed “solution” and elaborating of how tinkering with the income tax system will solve the problem, but I can’t find any.  Can you?

[Andrew Kavchak]

Hi Folks,

If you were participating in a government consultation exercise regarding autism policies, could you summarize everything you wanted to say in 30 seconds?

One of the key buzzwords in government and bureaucracy policy and decision-making is “consultations” with stakeholders.  In theory, it is a process which is supposed to enlighten the government to the needs and wants of the people which should help them make decisions on the allocation of resources in such a way as to reflect the desires of the people and make democracy work.  But too often the consultation process is somewhat of a sham and smokescreen for decisions that have already been made.  Sometimes the consultations are exhaustive and thorough….but other times they are just “going through the motions”.

The Ontario government apparently engaged in some consultations before making their early February announcement regarding changes to the autism program.  The Minister started off her conference call by saying something about “we’ve consulted, we’ve listened, we understand….now here’s what we’re gonna do”.  Yet, she experienced so much opposition that they announced they are going back to the consultation process.  And now here is the last public report about the consultation process … you got 30 seconds!  Next!  So, is this really consultation?

https://windsorstar.com/news/local-news/autism-consultations-leave-much-to-be-desired-windsor-mom-says

[Andrew Kavchak]

Hi Folks,

Well, there’s no doubt about it, as a result of some government announcements, autism organization activities and community demonstrations the past few months have seen an uptick in the media stories about autism.  In some quarters more and more people are expressing themselves in one way or another (e.g., demonstrating with signs, social media, traditional media articles and stories, etc.). Most recently the Ontario government announced a new round of “consultations” to get input from the community so they can “get it right”, and CASDA issued its blueprint for a National Autism Strategy, etc.

However, is there really a “debate” going on? What are the ideas that are being discussed?  Which are percolating to the top?  Who (either individuals or organizations or politicians, etc.) is/are emerging as leaders in the debate?

From what I’m seeing, there’s not really much of a debate going on. The vast majority of parents in Ontario are upset about the recent announced changes to the Ontario Autism Program and the general message that seems to be emanating from them is that they want more services or funding for services.  Regarding CASDA’s blueprint, I don’t see much commentary anywhere.  Perhaps I’m missing something.  At the April rally on Parliament Hill and on some recent twitter postings there is talk of “momentum”, but let’s be honest….those who have been in the trenches before have seen flurries of activities and announcements which gave the impression of momentum towards something, only to be followed by silence and waiting for nothing.  Hopefully, it will be different this time, but what really strikes me is the lack of serious debate and honesty or transparency going on.

Here are some examples.  Many politicians have indicated at various times that they support our community. Well, where are the clear statements as to what they are advocating for and supporting?  The most glaring example of course is Mike Lake.  While CASDA gave him a lifetime membership and considers him an ally in the cause, I can’t find any post on his Twitter feed or transcript of any speech or any letter or document that he has issued where he clearly states where he stands on the issues raised in the CASDA blueprint for a National Autism Strategy.  This should not really be surprising however.  When the Liberal government announced in February 2018 a $20 budget allocation towards a still non-existent autism website and anti-stigma campaigns, etc.  I could not find any comment from Mike Lake.  Why is that? If he is a champion for autism advocacy and really believes that public policy can make a difference in the lives of Canadians with autism, would it not be reasonable to expect him to at least comment publicly on these initiatives and indicate whether he does or does not support them and give some reasons?  Back in 2007 when he voted against a Bill that would have legislated the requirement for the Minister of Health to create a National Autism Strategy, he issued a statement explaining his rationale (addressing one part of the Bill and ignoring another). That statement was then sent by many MPs to parents like me and posted on number MP websites to convey the message that they could not vote for it and even a parent MP with a child with autism was against it.  Well, if Mike Lake now (in 2019) supports a National Autism Strategy and the CASDA blueprint, it would be nice to get a statement from him with as much detail so that we could send it those MPs who may be hesitating.  But no.  Mike Lake’s previous 2007 statement is now nowhere to be found (except for the FEAT annotated version available at: http://featbc.org/downloads/FEATBC_release_02_26_07.pdf

What conclusion can one come to about the silence?  Does a person who appears to refuse and avoid to engage in debate really belong in politics?

On a related note is the organization called “Ontario Autism Coalition” (OAC).  While they have been very successful in challenging the Ontario government over the years and clearly can claim credit which they deserve for getting some policies overturned or mitigated, their agitation is sometimes perplexing.  For example, Mike Lake wrote a piece that was recently published in the National Post in which he admitted that he was previously influenced by the anti-vaccination hoax movement and more recently came to his senses.  The OAC posted a tweet complimenting him for his bravery, openness and clarity on this important matter.  Yet, nowhere can I find a post from them asking him to be just as brave, open and clear with respect to what he believes autism public policy should be.

Similarly, as the Ontario government recently started a new round of “consultations”, the OAC head posted on social media that she filled out the online survey and conveyed a few key points which she hoped other parents in the community would repeat (e.g., things like no age or income caps on funding, etc.). Yet, the issue of whether it should be the Ministry of Health that delivers the treatment (as opposed to the Ministry of Social Services) and whether it should be covered by the Ontario Health Insurance Plan (OHIP), i.e., Medicare, was not mentioned at all.  Unfortunately, while the OAC deserves credit for its accomplishments and efforts, this clear omission reflects a philosophy that I don’t share.

However, the award for most misleading interventions in public autism-related debate on social media might be most appropriately be given to CASDA.  A while ago they were in Ottawa for an annual conference that they organize with their supporters and for their press conference to launch their National Autism Strategy blueprint (a press conference which Mike Lake did not participate in, by the way).  At the time, they posted a note about their blueprint on their Facebook page.  One lady then posted this comment:

“Sheri Bower Radoux How can a national strategy not include ABA services?!? This is why families in Ontario are in an uproar!”

And how did CASDA reply? “CASDA Sheri Bower Radoux it does- it includes evidenced-based practices and specifically names ABA : )”

The CASDA reply implies that their blueprint for a National Autism Strategy does in fact address the need for ABA treatment.  The original poster then replied “Thank you for clarifying!”.  Unfortunately, CASDA’s reponse is misleading.  Their blueprint document only mentions ABA treatment once in the context of an example of “supports” that parents have difficulty accessing for their kids.  The CASDA blueprint’s proposed solution for the problem is more tax credits, training, etc.  This hardly addresses the issue of access to ABA treatment in Ontario or anywhere else.

More recently one person named Louis Busch tweeted out an interesting message about the 2016 Liberal Party resolution on autism treatment in Medicare:

“Hey <s>@</s><b>JustinTrudeau</b>, in 2016 the <s>@</s><b>liberal_party</b> promised to make access to evidence-based treatment in autism a national priority. Then 3 years of nothing. Now <s>@</s><b>fordnation</b> destroys autism services & you turn a blind eye? Shame!”

And how does CASDA respond?  They tweeted this message:

<s>”@</s><b>JustinTrudeau</b> <s>@</s><b>CQualtro</b> <s>@</s><b>SenatorMunson</b> <s>@</s><b>ASDalliance</b> CASDA has a blueprint for a National Autism Strategy. This isn’t hard and it won’t break the bank. It is the right thing to do. Check it out at http://CASDA.ca  Together we can improve the lives of autistic Cndns.”

In other words, CASDA makes it appear (although they don’t directly state) that their blueprint for a National Autism Strategy is an appropriate (“right thing”) solution that addresses the concern raised by Louis Busch.  Anyone who reads their blueprint will see that that is clearly not the case since it does not address the issues raised in the resolution (e.g., Medicare coverage for autism treatment and federal funding formula, etc.).  The resolution is at the link below….compare it to the blueprint.  Miles apart.

How does the public debate benefit from suggestions that a blueprint addresses a problem which it does not? Just wondering….

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

[Andrew Kavchak]

Hi Folks,

Our federal politicians are apparently back in Ottawa today after their Easter break.  I hope that first thing in the morning they will read this op-ed in today’s Ottawa Citizen.

https://ottawacitizen.com/<wbr />opinion/columnists/kavchak-<wbr />federal-parties-must-support-<wbr />autism-funding-and-mean-it

<h1 class=”m_-1164899376791761852entry-title”>Kavchak: Federal parties must support autism funding – and mean it</h1>

In 2016, the Liberal Party approved a resolution calling on the government to work with provinces and provide funding for coverage for autism treatment. The Trudeau team has since ignored it.

ANDREW KAVCHAK

Updated: April 29, 2019

When my son was diagnosed with autism in 2003, the new provincial Liberal government was conducting a review of autism programs. My wife and I placed our son on a waiting list for treatment and hoped for policy improvements that would enable him to access the treatment he desperately needed. Instead, we had to resort to the private sector at tremendous expense for two years before we got some temporary financial assistance. Today, after years of continuous tinkering, another government plagued with waiting lists is struggling to reform the Ontario Autism Program (OAP).

The inadequacy of provincial programs has recently prompted the Canadian Autism Spectrum Disorder Alliance (CASDA) to issue a blueprint for a proposed National Autism Strategy (NAS) that it hopes will be adopted by federal political parties in their election platforms. The blueprint calls on the federal government to act in areas that cover the lifespan, ranging from access to supports to employment and housing, etc.

My son’s name was recently added to the unconscionably long 10-year waiting list for placement in a group home, so housing is an important issue for us. However, the blueprint is a disappointment because it contains a glaring omission. It says nothing about medicare’s absence from the autism treatment file.

The recent protests in Ontario were all about access to treatment. When a child obtains a diagnosis, the first thing parents ask is, “What can be done to help the child develop to their full potential?” Since the 1980s, the medical community has known that Intensive Behaviour Intervention (IBI) treatment, based on the principles of Applied Behaviour Analysis (ABA), may help almost half of kids with autism develop to the point of entering the school system and functioning at the average level. The others typically experience various degrees of progress in their development. Investments in treatment for children with autism will ensure a reduction in support-related expenses throughout the rest of their life.

Yet, instead of being offered by the Ministry of Health and covered by OHIP (medicare), the OAP is offered by the Ministry of Social Services, the same department that administers welfare. Does the Ministry of Health administer any programs that more appropriately belong to other ministries? One discriminatory consequence of this failed game of musical chairs is that Canada Health Transfer and “Health Accord” payments don’t find their way into autism treatment programs.

While CASDA wants the federal government to get involved in the autism file, its blueprint does not address this problem. Instead, it refers to challenges in accessing “the right supports” and proposes expanding tax credits and more training. CASDA’s blueprint documents even state that it is not seeking to change provincial policies.

At a policy convention in 2016, the Liberal Party of Canada approved a resolution calling on the federal government to work with the provinces and provide funding to ensure medicare coverage for autism treatment. The Trudeau government has ignored it. This contrasts with what it has been done elsewhere.

In 2017 it passed a law requiring the federal minister of Health to cooperate with his provincial counterparts and develop and implement a national strategy to address all aspect of Alzheimer’s disease. That strategy is to include guidelines for treatment and standards of care that are evidence-based etc. Even though the strategy has not yet been released, the recent budget allocated $50 million to it. The same budget announced that the government is establishing a number of “foundational elements” of a national pharmacare program, including the development of a national strategy for high cost drugs for rare diseases “to help Canadians gain better access to the effective treatments they need.” Clearly, where there is a federal will, there is a way.

A central component of any National Autism Strategy should include a commitment to: 1) provide the provinces with incentives to ensure that autism treatment is provided by Ministries of Health and covered by medicare; and 2) negotiate future Health Accords that include funding for treatment.

If a party incorporates this commitment into its election platform, it will get my vote.

Andrew Kavchak lives in Ottawa.

[Author]

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