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Andrew Kavchak
ParticipantHi Folks,
Well, the Ontario government has now appointed an autism “advisory panel”. Their task is apparently to make recommendations on a “needs-based funding model”. The name reminds me of an Auditor General report complaining that in one employment funding program years ago the government actually sent money to companies that never applied for funding. I suppose that is an example of the “no-needs funding model”.
https://news.ontario.ca/mcys/en/2019/05/ontario-announces-autism-advisory-panel.html
The members of the advisory committee are listed here:
https://news.ontario.ca/mcys/en/2019/05/members-of-the-ontario-autism-program-advisory-panel.html
One of the co-chairs is the head of the Autism Society of Ontario. She’s been around a long time, but I can’t recall her ever suggesting that the Department of Health and Medicare should be involved in the Ontario Autism Program. I hope I’m wrong, but I don’t think so.
It sounds like there is also at least one “self-advocate” on the panel. Maybe that’s why the Minister suggested the panel members “be kind to each other”.
A rocky start…..
ParticipantHi Folks,
Readers of this discussion board know that I often review the “Hansard” transcripts of the shenanigans in Parliament and occasionally find some interesting statements. However, every once in a while, one comes across passages where one is left wondering….”what?” Yesterday’s House of Commons Hansard contains one such passage which is an exchange between Mike Lake and Marc Garneau. The context involved the House of Commons being on the verge of passing Bill C-81 (An Act to Ensure a Barrier-Free Canada). Marc Garneau (Minister of Transport just finished speaking and saying a few words about accessibility in Canada.
Tuesday, May 29, 2019.
Mr. Speaker, as I am sure the hon. member knows, the bill will pass in about half an hour or less. After a couple more speeches, we will be at that point. It is a good day for Parliament. I have had the opportunity to serve with the member on the industry committee in a previous life, prior to the last election, and I enjoyed the non-partisan conversations we had at that time, just as I enjoyed his speech today. He rightfully gave commendation to the minister, recognizing the work she has done in sharing her life experience to help people who have had similar life experiences. I would also like to recognize our former minister of finance, who did the same thing for 10 years in the House, using his life experience to inform his policy decisions. This is questions and comments, and I am going to sit down and leave this as a comment, thanking the Minister of Accessibility for her work on this file and thanking the Minister of Transport, who just spoke, for his non-partisan speech. In the spirit of this day, as we work together to create a better world for Canadians living with disabilities, I will end my comments there.
<b>Hon. Marc Garneau: </b>Mr. Speaker, I want to thank my colleague for his comment. Indeed, he is right. We have had the opportunity to work together. In the old days before the last election, when I was the industry critic, I appreciated working with him and I appreciated his open-mindedness. We quite often agreed on a number of things, although not every time. I want to commend my colleague for the example he has shown in this Parliament every year by speaking about his son and about autism. I think he has played an enormously important role in sensitizing all of us in the House. I commend him for his work and for his positive comments today.”Mike Lake “open-mindedness”? With respect to what? A federal role in getting autism treatment covered by Medicare? Really? When? Although Mike Lake always seems to speak about his son when the issue of autism comes up, what has he actually “sensitized” the MPs in the House of Commons to? Are any of the MPs more aware today of the obstacles facing the autism community in terms of access to treatment under Medicare than they were before Mike Lake started making his one-minute-once-a-year statements about his family’s love of his son on “Autism Awareness Day” and his blowing kisses in the direction of the public gallery? In all his years in the House of Commons, has Mike Lake ever said “ABA treatment for autism should be covered by Medicare in Canada” even once? So much opportunity…wasted.If that exchange was not enough to make your stomach churn, Mike Lake retweeted a message of congratulations from someone for “And a special shout out to Mike Lake <s>@</s><b>MikeLakeMP</b> for his brief but great message! Good job Mike!” But what was his message? All he did was say that he recognizes the work of some MPs and enjoyed conversations and listening to their speeches. Just as with Garneau’s response to Lake in the House, it is all a series of back-slapping and congratulations to MPs for doing their jobs (and less). Great message? Really? Where?ParticipantHi Folks,
So the Globe and Mail published an article about the costs of raising a child with autism.
The costs and economics of autism are obviously a key part of any discussion about appropriate public policy. While some elements of the community have raised this issue a long time ago (e.g., a study done in support of the Auton case when it went to trial), many other elements of the community are silent on the matter. I don’t see much discussion of the numbers in the current Ontario autism fiasco. And of course politicians only discuss today’s costs and ignore others. This is one of the weaknesses of the political system’s inability to consider long-term issues that go beyond the next budget cycle or, at most, the next election.
While the cost to a family for raising a child with autism certainly needs to be known, it is only part of the whole picture which should be understood by decision-makers. Another crucial set of figures to understand is the cost to the government of providing ABA autism treatment (as an investment) and the comparison of lifetime support costs for adults with autism who have had the benefit of early ABA treatment in their lives and those that did not (untreated). Those figures should make the cost/benefit analysis and argument justifying the expenditures on treatment (through Medicare) a “no-brainer”. Regrettably, this equation is not the subject of much, if any, public policy discussion that I see from any of the leading autism organizations. This may be one reason why the autism community should seriously consider pooling some resources to hire some professional lobbyists who may be more familiar with this sort of thing and strategies to influence government (and turn on the light).
ParticipantHi 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.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!Please join with others in sending the message below to:1) Ontario Autism Consutlations email at: autismconsultations@<wbr />ontario.ca2) Premier Doug Ford: doug.ford@pc.ola.org3) 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>ParticipantHi 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”.
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.
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.
ParticipantHi 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”.
ParticipantHi 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…
ParticipantHi 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 systemsprovide little assistance for those currently in schools and those transitioning into adulthood. Hence, we need a national autism and special needs strategy.”ParticipantHi 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
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.”ParticipantHi 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?
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