[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,

I just sent this letter below to the Ottawa Citizen.  Hopefully it will be published.  Yesterday I heard on the radio an interview with Lisa MacLeod and although she tried to put a brave face (and spin) on the fiasco that she created in the autism file, she actually sounded like she broke down in tears when she related the story of the death threat against her (there were periods of silence on the air as I assume she was trying to regain composure).  It was truly one of the saddest interviews I ever heard.  Hopefully she will have a lighter time of things in her new culture and sports file and at least create a lasting positive legacy among our community by opening up a fair share of opportunities for autism in sports and culture, etc.

Dear Editor,

Re: Premier Ford’s Cabinet Shuffle

Shortly after Lisa MacLeod was first elected to the legislature in a 2006 byelection she attended a demonstration that I organized in front of Premier Dalton McGuinty’s constituency office.  As a parent of a child with autism who was not getting treatment under OHIP (Medicare), I entered the world of political activism and was glad to see the newly-elected opposition MPP attend the rally to offer her support. At the demonstration Lisa MacLeod took the megaphone and stated that she learned a lot about the challenges of the autism community from her NDP opponent Laurel Gibbons during the campaign and was going to be our autism community’s advocate in the legislature.

As a member of the autism community who has for many years looked upon changes in government and ministers as reason for hope, her bungling of the file over the past year was a profound disappointment and her recent removal from the portfolio a sad ending to a wasted opportunity which was over a dozen years in the making. Many parents have come together to express their children’s need for access to treatment. Clearly, something was not working and her planned changes were perceived as making things worse.  However, the solution which the Premier should have considered was not removing Minister MacLeod from the Ministry of Community and Social Services (MCSS), but removing the “Ontario Autism Program” (OAP) from the MCSS and transferring responsibility for autism treatment to the Ministry of Health where it appropriately belongs. Autism is a neurological disorder and access to treatment following a child’s diagnosis is a healthcare issue. Where is the logic in putting the program in the hands of bureaucrats who deal with welfare, disability pensions, and human trafficking? What would be the reaction of the Cancer Society if the Premier said that from now on all cancer treatment services were going to be the responsibility of the Ministry of Agriculture? The government has perpetuated this ongoing calamity and attempted to generate some credibility and legitimacy by conducting another round of public consultations and appointing another advisory committee.  It is my sincere hope that the government will acknowledge and positively respond to the key request that parents like me have been making for decades: “Medicare for Autism Now Please!”.

[Andrew Kavchak]

Hi Folks,

The Ontario Autism Coalition posted on their website their report with recommendations to the government of Ontario.  It is 27 pages long. I did not find the word “Medicare” anywhere.  I did come across three references to “OHIP” (the Ontario Health Insurance Plan), and one (at page six) says that more than half of survey respondents would like “autism services covered by OHIP”.  I have not found any corresponding recommendation or any clear statement that they would like ABA treatment for autism covered by OHIP. The section on healthcare at page 14 does not mention it. Perhaps I missed it. If someone sees something like that anywhere in the report, please let me know.

https://ontarioautismcoalition.com/wp-content/uploads/2019/06/OAC-Recommendations-Report-June-2019-FINAL-for-website.pdf

[Andrew Kavchak]

Hi Folks,

Well, as suspected, Ontario Premier Doug Ford just shuffled his cabinet and the Minister who was responsible for the Ontario Autism Program (along with all the other social and welfare programs in Ontario) is no longer doing that job. She has been “demoted” to the Ministry of Tourism, Culture and Sport. I kind of suspect she is relieved.  Pity.  She first came to an autism demonstration that I organized in front of Dalton McGuilty’s office back around 2006 or so and has had plenty of time to learn about the autism file.  Unfortunately, the announcements and her handling of the file all seemed to blow up in her face.  Unfortunately, the program is once again under review by an advisory panel and more changes are expected this summer.  However, she won’t be at the helm to finish a job that she started.  Is the community better off with the “new guy” (Todd Smith)?  Time will tell, but I suspect that in many ways we are back to square one.  All that lobbying the previous Minister and attempts to educate her are all history and irrelevant.  Now there’s the “new guy” to lobby educate.  Did we make it to first base yet?  It’s hard to tell.  I think we’re still at bat and just have a new pitcher to deal with.

On a separate but somewhat relevant note, something else happened in the Twitter universe recently that is worth of note with respect to the federal parties.  First, we know what the NDP election platform says about autism (one line about developing a national autism strategy).  So far, the Liberals have said nothing about autism in the context of this election (or any other context for that matter) so I suspect it is reasonable to assume that they won’t say much, if anything, about autism in this election campaign.

And so where are the federal Conservatives?  Well, a woman in Ontario recently posted a video of her meeting Andrew Scheer at some public event.  She asked him about his policies on autism. He replied by saying something about they keep “pushing” and Mike Lake is the “point man” on the issue.  Good grief!  I remember when I first went to his office when he was first elected in 2006 and came out of the meeting thinking that not only was he unlikely to be helpful, but he may turn out to be an obstacle.  Well, after that Twitter post of the video, one parent posted a message asking Mike Lake what can we expect from the Conservatives?

Mike Lake then posted again the video from June 21, 2017 when three opposition party leaders spoke in favour of his “Canadian Autism Partnership” project, suggesting that they “stood together for Canadians living with autism”.  He then added that back in 2017 the opposition parties were in favour of this CAPP thing, and only the Liberals were against it.  Unfortunately, he did not mention that the Conservatives only proposed the CAPP thing after their nine years in office was already over.  If they were so much in favour of it, why didn’t they implement it while they were in power? Despite this obvious problem that really throws into doubt his credibility, he added “Our support for Canadians w/ autism is steadfast. You can count on it.”  Those kind of responses are the kind of thing that my stomach turn. They strike me as shameless deceit. Fortunately, not all parents are buying into the baloney. One parent responded with:

“Your colleagues in Ontario promised us they were behind us 1000% too… And we all know how that’s worked out. Combine that with the fact you help shut down bill C-304 in 2007 and I have a hard time believing much of what you’re selling.”

Mike Lake replied by proposing that the parent send him their phone number so he can call and they can “chat about it”.  This is part of Mike Lake’s MO.  I can’t find any written declaration of his with respect to where he stands on autism public policy and what he would like the federal government to do.  I can’t find any written comment of his anywhere about the Liberal 2018 budget provisions on autism, or the CASDA “blueprint” for national autism strategy, or the NDP’s election commitment, etc.  What does Mike Lake stand for and try to promote when it comes to autism? If his leader refers to him as the party “point man” on autism, what does the point man have to say?  Whatever it is, it seems he only wants to say it verbally and in private to one person at a time over the phone.

Another person then posted this message: “It’s becoming clear that talking & chatting has become code for delaying and stalling. How can politicians expect families to continue to have any trust? “We need to stop Trudeau”, & “We need to get elected first” R not acceptable responses.”

Then someone followed up with another question to Mike Lake: “Has your plan for the CAP changed any from the version asked for in 2017? – $19 million over 5 years – rejected by <s>@</s><b>AutismCanada</b> https://www.globenewswire.com/news-release/2017/06/27/1376135/0/en/Autism-Canada-rejects-Canadian-Autism-Partnership-Project.html After what <s>@</s><b>fordnation</b> <s>@</s><b>MacLeodLisa</b> have done to the autism program in Ontario, Canadians will need a stronger commitment.”

And how did Mike Lake respond? “Patrick, CAP had broad community support in 2017 (anonymity is simply impossible). $20M was the expert working group’s ask after consulting for nearly two years on it. Glad to chat to hear what you’d recommend to build on the expert advice. I think you have my number?”

Again, Mike Lake proposes to chat on the phone. Mike Lake’s memory is somewhat faulty.  The CAP business plan requested $19 million (see page 5 of the executive summary) https://www.casda.ca/wp-content/uploads/2019/02/CAPP_executive_summary_EN.pdf  In the subsequent Liberal budget the government allocated $20 million to the creation of a still non-existent website and anti-stigma campaigns, etc.  The Liberals evidently wanted to demonstrate that their largesse exceeded that of the Conservatives (and Mike Lake now appears to have appropriated the figure).

His statement that CAP had broad community support seems to be part of this evolving mythology.  Not only did Autism Canada issue a public statement withdrawing their support for CAP, they also withdrew from the “alliance” that was promoting the thing.  Why?  Although they refer to lack of financial disclosure, transparency and measurable “deliverables”,  any objective evaluation of the proposal would have to conclude that the creation of the CAP bureaucracy to engage in “issue identification” was not committing either the federal or any provincial government to actually doing anything to change public policy (for better or worse).  In other words, while politicians would check off the autism box and say “done!”, nothing would change in the lives of Canadians living with autism.  This failed project, which the Conservatives did not even implement while they were in power (instead setting up a two-year consultation exercise to come up with a “business plan” after they lost the subsequent election!) has emerged as the Holy Grail of Conservative autism policy in years gone by.  If the CAP project was so great, Mr. Lake, why don’t the Conservatives announce a commitment to implement it as part of their election platform?  Is there any reason why the Conservatives don’t want to revive the idea?  Could it be that behind closed doors they know it was a lousy idea in the first place?

[Andrew Kavchak]

Hi Folks,

Well, autism is still in the news and obviously becoming a pain in the Ontario Premier’s neck, butt, head, etc.  The Premier is expected to announce a Cabinet shuffle this morning.  Many people in the autism community have called for the Minister responsible for the autism treatment to go away, and I suspect many are placing bets on whether she will be switching responsibilities in Cabinet with someone else.

However, even with all this suspense building up, this is already shaping up to be a “newsome” day as some of  the autism news headlines this morning are already thought-provoking. Despite news that several hundred workers in the autism business are being laid off in Ontario, we have these news stories. First, one suggests that the Ford government is OK with the loss of employment of autism workers and says there will be more.  Is anyone actually happy to read such stories?

“Ford government defends layoffs at autism centre, warns more to come”

https://toronto.citynews.ca/2019/06/18/ford-government-defends-layoffs-at-autism-centre-warns-more-to-come/

Notwithstanding the loss of employment of people on the front lines in the autism business, the Premier asserts that his government is opening the taps when it comes to financial resources for the autism community.

“Doug Ford says province is ‘pouring money into autism’”

https://www.thestar.com/politics/provincial/2019/06/19/doug-ford-says-province-is-pouring-money-into-autism.html

So how is it that there is a new Niagara Falls of millions of dollars being “poured” into autism programs and people are being laid-off? Perhaps it is because the resources are not actually getting through to the parents.  Perhaps it is because on the ground in the homes of the community people few people, if any, have actually received any of that “direct funding” that was promised months ago.  Perhaps it is because people who have been on waiting lists for years are still waiting for something that is now supposed to be much less than what they were told they would receive when their child was diagnosed.  One headlines that suggests a painful decision that some parents have to make is this one:

“‘Which kid am I leaving behind?’ Parents question changes to autism treatment funding”

https://toronto.ctvnews.ca/which-kid-am-i-leaving-behind-parents-question-changes-to-autism-treatment-funding-1.4474072

So parents have been protesting.  We live in a democracy, don’t we?  Does the squeaky wheel not get the grease (eventually)?  Well, according to the Premier, he does not get it.  How could the government “pour” all this still-unseen money into the autism treatment program, and people still have the nerve to demonstrate!?!?  Apparently, this phenomenon “boggles his mind”!

“Protests over autism changes ‘boggles my mind’: Ford”

https://ipolitics.ca/2019/06/19/protests-over-autism-changes-boggles-my-mind-ford/

It seems to me that the way his government is dealing with the autism public policy file his mind is going to get “boggled” a bit more before the “boggling” recedes and goes into remission. But who knows?  If there is a new Minister appointed today who actually manages to mismanage the file worse than the still-current Minister, then there might be a whole lot more “boggling” of minds going on for the rest of this government’s mandate.

 

[Andrew Kavchak]

Hi Folks,

Well this is turning out to be a lots-of-news type of day. Back in February the Ontario government announced changes to the Ontario Autism Program and you know about the parent protests and the government’s new round of consultations.

However, here is an update. The Ontario government’s plan apparently involved providing all the families on the waiting list for treatment with some cash to pay for treatment directly themselves starting in April (the amount of the cash is one of the big things parents are complaining about – it is a mere fraction of what many, if not most, kids need). Well, apparently no one has yet received any money at all (and we’re in mid-June!).  One result of this situations is that one of the ABA/IBI centres in Toronto has just given 291 members of its staff lay-off notices!!!

https://toronto.ctvnews.ca/nearly-300-employees-at-gta-autism-treatment-facility-given-layoff-notices-1.4470174

 

[Andrew Kavchak]

Hi Folks,

The federal Liberal government just announced their “National Dementia Strategy” for which they already announced millions in funding in the last budget months ago.

The strategy can be found here: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html

Will any of the MPs who say that autism “is a provincial responsibility” (as Harper used to do) express opposition to this dementia strategy?  Actually, let’s be honest. If dementia involves forgetting the promises you made just a few minutes ago, then every MP has dementia big time.  No wonder they passed a law and moved on that before the election!

[Andrew Kavchak]

Hi Folks,

Shortly after posting my last message about the federal NDP’s election platform reference to consulting, developing and implementing a National Autism Strategy that would address research, services, employment and housing issues, another thought struck me about the problematic wording of the commitment.

Why is it that we always seem to be struggling to get to first base? Why is it that we can’t get to second or third (not to mention home plate)?

When Mike Lake and CASDA came out with their “CAP” project, it was to engage in “issue identification”.  The recent CASDA blueprint calls for consultations.  The Ontario government previously indicated that it engaged in consultations when it made its disastrous announcement in February, and was more or less forced to start over with a new round of more extensive consultations. Now it just appointed an “Advisory Committee” to review the results of the consultations.  Similarly, the provincial Ontario NDP just held their own autism consultations and issued their own report about “what we heard”, bla, bla.   Good grief!  The Supreme Court of Canada heard the Auton case in 2004 and issued its decision about ABA autism treatment under Medicare in November of that year.  The court unanimously said it is up to the legislatures to decide whether or not autism treatment should be covered by Medicare.  This issue has been an outlier on the public policy landscape for at least 15 years.  Is it not time that a political party would say something along the lines of: “We know what the issue is, we have studied it for a long time, this is what people have been asking for for the past 20 years, and here is what we are going to do in order to give it to them”?  Is it too much to ask for a commitment to a home run rather than a general statement of “we will start at zero, everything that has been said in the past does not matter and does now count, we will start by asking a few people who can speak ‘what do you want?’, and then we’ll issue a report, and then we’ll appoint an ‘advisory committee’, and then we’ll study their recommendations, and maybe by the end of the next mandate, we’ll have an idea of what we should do, but it will be time for another election so we’ll use it as a ‘vote for us’ slogan and hope that you’ll forget that we just wasted another four years of precious time”, bla, bla…

I noticed that on some Twitter messages some parents are all excited about the one sentence in the NDP platform and suggest they will be voting NDP, etc.  While the one sentence is certainly better than nothing, I find myself unable to get overly excited about it and hope that the other mainstream parties will make an effort to top the NDP’s commitment and at least get beyond first base.  Do we always have to “start over” again and again? Incidentally, not only CASDA has so far not posted any message about the NDP’s commitment, but neither has Mike Lake…at least, none that I could find.  Perhaps they believe that it is unworthy of commentary?

 

[Andrew Kavchak]

Hi Folks,

Yesterday (Sunday) the federal NDP announced their election platform.  As you may recall, CASDA issued a “blueprint” for a National Autism Strategy a while ago which it hoped that the federal parties would adopt in their election platforms.  As I previously posted and outlined in an Op-Ed piece, I thought the CASDA blueprint had a major hole in it because it did not explicitly state that our community needs ABA treatment for autism covered by Medicare.

So what does the NDP platform say? See https://www.ndp.ca/commitments

In the section on “Extending Medicare to cover services you need” there does not seem to be word about it.

“Canada’s health care system today reflects the health care needs of the 1950s. Back then, New Democrats boldly transformed the health care system by guaranteeing that Canadians who needed to see their doctor or go to a hospital would not be faced by bills they couldn’t pay.

A decade of Conservative neglect has hurt our public health care system and eroded public trust. The Liberal approach – a patchwork of interventions and programs here and there – simply isn’t delivering the results that Canadians need. Too many Canadians, even those with private insurance, just aren’t able to get the help they need.

As it stands, the Canada Health Act is supposed to fund all medically necessary services that Canadians might need. But in reality, there are many kinds of medical services that Canadians need for their health and wellbeing that aren’t covered by public health care plans. As jobs with extended health benefits become harder to find, fewer people will have access to extended health care services.

You and your family deserve better. New Democrats believe that over the next decade, Canadians need a historic expansion of the services covered under our national health care system.

One in three Canadians has no dental insurance and over six million people don’t visit the dentist every year because they can’t afford to. Too many people are forced to go without the care they need until the pain is so severe that they are forced to seek relief in hospital emergency rooms.

We know now that good oral health is a critical component of overall good health – and that means our health care system should cover it, too. A New Democrat government will work together with provincial partners, health professionals, and dentists to develop a roadmap to including dental care in the Canada Health Act.

There’s a lot more to do to modernize our health system for today’s needs. Mental health support is an enormous unmet need across the country; a third of Canadians struggling with mental health challenges who have expressed a need for counselling weren’t able to get it. Eye check-ups are important for preventing vision loss and identifying other health issues – yet many, particularly children and seniors, don’t get regular eye care, or struggle to pay for the glasses that they need to function.

New Democrats believe that we need to work towards health care that covers us from head to toe. Mental health care should be available at no cost for people who need it, and everyone should be able to get regular eye care and hearing care. Canadians struggling with infertility should also have access to the procedures and care they need, no matter which province or territory they live in.

The long-term path to providing public coverage for these services will require strong federal re-investment in our health system with the knowledge that investing in preventative health services will ultimately save money and give Canadians the care they need to live healthy, full lives.”

So in the Medicare section there is no reference to ABA treatment for autism. However, in the “Removing barriers for persons living with disabilities” section the very last sentence is relevant.

“We can do much more to make Canada an inclusive and barrier-free place. As a start, New Democrats will uphold the United Nations Convention on the Rights of Persons with Disabilities and strengthen the Accessibility Act to cover all federal agencies equally with the power to make and enforce accessibility standards in a timely manner.

To help tackle the unacceptable rate of poverty among Canadians living with a disability, we will launch a full review of income securityprograms. When it comes to employment, everyone deserves a fair shot at a good job that fits their unique abilities. A New Democrat government will continue and expand employment programs to make sure that quality employment opportunities are available to all.

For Canadians facing a serious illness, we’ll make Employment Insurance work better by extending sickness benefits to 50 weeks of coverage and by creating a pilot project to allow workers with episodic disabilities to access benefits as they need them.

Canadians living with disabilities shouldn’t need to worry about the cost of prescription medication, how to find housing, or how to get their mail. In addition to putting in place a universal, publicly funded national pharmacare program that will offer full benefits to all Canadians, a New Democrat government will restore door-to-door mail delivery for those who lost it under the Conservatives and create affordable, accessible housing in communities across the country.

Finally, we will work with Canadians living with Autism Spectrum Disorder to develop and implement a national Autism strategy that will coordinate support for research, ensure access to needs-based services, promote employment, and help expand housing options.”

So the NDP want to consult with “Canadians living with [ASD]” to develop a strategy.  Does “living with ASD” mean only high-functioning self-advocates who rarely, if ever, talk about the benefits of ABA, and who are often viciously opposed to it? Does does the NDP also propose to consult with parents of those who can’t speak for themselves? I wish they would have simply referred to consulting with stakeholders and clinical experts, etc.  Does “ensure access to needs-based services” include ABA treatment for autism under Medicare?  It might, but why not specifically say so?  Why is it so hard, even for the NDP who in this platform want to extend Medicare coverage to dental and pharmacare, etc. to explicitly and clearly say “ABA autism treatment covered by Medicare”?

Why?

Perhaps it is because they used the CASDA blueprint as the basis for this one sentence at the end and the CASDA blueprint itself does not mention these key words either.

And how does CASDA feel about this one sentence in the NDP platform?  I just checked their Twitter and Facebook pages and there is no mention of the NDP election platform.

[Andrew Kavchak]

Hi Folks,

Further to my last post and the comment about parents of newly-diagnosed children perhaps not being the best authorities when it comes to treatment for their children with autism, NBC news is reporting a case of one mother who…well, you have to read it to believe it.

https://www.nbcnews.com/tech/internet/fake-science-led-mom-fee-bleach-her-autistic-sons-police-n1017256

[Andrew Kavchak]

Hi Folks,

Well, I suppose that with the Ontario provincial government’s autism program being under review and with only a few months to go before the federal election, now would be a good time for … another autism report!  So two researchers at a university in Ontario have conducted a study which concluded that families of children with autism are…”under severe pressure”.  A press release is here:

https://wlu.ca/news/news-releases/2019/june/families-of-children-with-autism-under-severe-pressure-laurier-study-finds.html

The report is here:

https://wlu.ca/academics/faculties/faculty-of-human-and-social-sciences/faculty-profiles/janet-mclaughlin/larc/assets/documents/larc-report.pdf

I have not had time to go through it in any detail, but I will note this: I found four references to “OHIP” (that’s the Ontario Health Insurance Plan or Medicare) in the 44 pages of the report. The last reference is in the first of the recommendations which I copy below:

“Informed by these survey results, our key recommendations for the new OAP include: 1. Provide evidence-based services, such as ABA and IBI, OT, Psychology and SLP based on clinical need and parent preference, but not limited by arbitrary age caps or funding or a similar model in which the providers
directly bill the government for services, reducing the time, paperwork and stress for parents.”

OAP is Ontario Autism Program and SLP is speech and language pathology. While many people like the idea of “parent preference”, not all parents who suddenly obtain a diagnosis for their children are suddenly clinical experts in autism treatment and able to make the best choices that are in the best interests of their child when it comes to treatment. I kind of like the idea of having some professionals in the mix of decision-making and assume that the reference to ‘clinical need” is one where a professional may be involved in the determination.

It appears that one of the researchers has been appointed to the recently-appointed Ontario government “advisory committee” that is supposed to review the input of the government’s recent consultations and presumably advise the government what to do next.  Given that the government also appointed two “self-advocates” to the committee, at least one of whom has made several controversial statements on social media clearly illustrating his hostility to all things ABA, it will be interesting to see if the committee’s eventual report (if it is made public) will contain any recommendation similar to the above.

 

[Author]

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