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Andrew Kavchak
ParticipantHi Folks,
Well, it just keeps coming. If it is not the media articles about lack of services for children with autism in Quebec or B.C., here is a new one from Saskatchewan with a lovely title “Survival or Autism Therapy?”:
Opinion: Survival or autism therapy? Sask. forces families to choose
I know, I know…a lot of people out there (particularly government bureaucrats) may be saying “Just hold on! We’ve got a website coming that will reduce regional disparities and help with access to resources!”, but I suspect the person behind the article may not be won over with the “website to the rescue” argument.
On a separate note, the CASDA folks who were so excited about the CAPP project last year (the one that requested $19 million for a new bureaucracy to engage in “issue identification”, etc.) is among the first autism organization that I could find that actually posted something publicly about last week’s budget. On their Facebook page they recently wrote:
“$20M for autism in 2018 Canadian Budget. Looking forward to engaging with the Public Health Agency of Canada and CASDA CASDA members on “community-based projects that will support innovative program models, help reduce stigma, and support the integration of health, social and educational programs to better serve the complex needs of families”. We need leadership and commitment to work towards a #Nationalautismstrategy”
My understanding is that it is $9.1 million that is being allocated to the projects that are quoted above, not $20 million (the difference is going to the website project). But how are “community-based projects” going to translate into a national autism strategy? It seems to me that the reference to “help reduce stigma” is more “autism awareness” campaigns. Those have been going on for years (I remember getting “Autism Awareness” bracelets to distribute at rallies over a decade ago from one autism organization or another, followed by pins with the puzzle symbol, car and fridge magnets, etc.) It seems to me that it is time for those who claim to support the creation of a national autism strategy to elaborate and define what that should include. To me, one that simply funds small community projects and autism awareness campaigns is not a real strategy to achieve much. Where is the reference to working with the provinces to provide funding and establish national standards for timely access for diagnoses for toddlers, treatment under Medicare for youths and appropriate housing for adults, etc?
I have tried to scan Mike (the MP) Lake’s Twitter and Facebook pages to see if he has posted any comment on the budget autism provisions. Given that they appear to not infringe on any provincial jurisdiction issue and give the impression of doing something although not really helping anybody on any waiting lists, I was wondering whether he would come out with a comparison to his pet CAPP project and make the usual partisan denunciations. But so far, as far as I can tell, nothing. The person whom so many in our community have thanked for all his “tireless work”, etc. appears to have nothing to say so far on the budget autism provisions. I wonder if that means he likes them but does not want to go on the public record as endorsing a Liberal Party initiative?
ParticipantHi Folks,
So last week a few stories came out in the media about the miserable autism program situation in Quebec and about a father spending his time protesting in Montreal in front of a provincial government office building because his seven year old girl “aged out” of a wait list for speech therapy without actually having received any therapy treatment (“La Belle Province”?). And now, just a few days after the federal government budget and the announcement of $20 million to be spent on autism things, an article appeared at the other end of the country in the “Times Colonist” about a family with a problem…the usual… child and family wait and wait to get a diagnosis and to get help.
I tried to find a reference in the article to how the new federal spending on an autism website to “reduce regional disparities” and “improve access to resources”, etc. would help in this case (or any other case). I did not find it. I guess the journalist/reporter and all the people she interviewed completely missed the connection and grounds for optimism and hope stemming from the latest federal budget. Maybe what she could have done as part of her research and “fact-checking” for the article is ask the federal finance minister (and other federal officials) something like: “Here is a typical family in an autism crisis situation where early diagnosis and prompt access to treatment are crucial…how will your autism spending announcements in the budget relating to a website and anti-autism stigma campaigns help this family?” or “Is the federal government’s idea for shortening the wait times for diagnosis and accessing treatment to create a new website with a ‘self-diagnosis’ toolkit and ‘do-it-yourself’ treatment program? If so, could you please list the other illnesses for which the government’s solution is a similar website and DIY program?”
ParticipantHi Folks,
Here’s a thought… one of my personal beefs if that whenever I wish to communicate something about autism and related public policy issues to someone at the federal government, there is really no one who is the main contact person on the matter. The Ministers for Health, “families”, “disabilities”, etc. have staff that receive correspondence and very, very little actually gets through to the Minister. You are lucky if you get a form letter reply, if anything, many, many months later. It is sufficiently discouraging so as to make you forget about it next time you have bright idea. And what about the opposition members? Well, there are a few who from time to time expose themselves as having an interest in autism and will do or say something, but realistically speaking, it is always “political” (i.e., can we score points for our side and make the government look bad?) and rarely has traction that lasts. And of course, the self-proclaimed champions then disappear (my favourite was Glenn Thibault who was an NDP MP from Ontario who wanted to beat the autism drum after getting elected a couple of elections ago – I think Peter Stoffer actually gave him some of his own Private Members Bills on autism – and then suddenly vanished, only to reappear as the new provincial Liberal MPP energy minister in the provincial government and from whom I’ve never heard the word “autism” again, etc. – did career opportunism take precedence over actually helping Canadian with autism again? Easy come easy go!). And what about the “unelected” politicians in the other chamber on the Hill? Well, sometimes they reply to emails, and sometimes they don’t. The criteria for determining whether a message is worth acknowledging and replying to (in contrast to completely ignoring) has always been a mystery to me. Some “for your info” messages get immediate replies, while others containing discussion on public policy issues are apparently unworthy of even the courtesy of an automatic reply acknowledgment of receipt.
So it was with surprise and interest that I saw this headline in relation to the U.S. federal government:
“Feds Name New National Autism Coordinator”
Would it not be interesting (and potentially worthwhile) to create such a position (with a meaningful mandate of course) at the federal level within the existing bureaucracy at either Health Canada or the Public Health Agency of Canada? I have written to senior bureaucrats on several occasions in the past and in some cases I got no reply and in some cases I got the form response that was the same “talking points” that the politicians used in the House to respond to questions (you know, the usual stuff about how the feds are already spending on research, etc.). But suppose there was a specific position created with a title similar to the one above and with a meaningful mandate, who was not outside the health bureaucracy, but on the inside. Would that give our community a contact point within the government who could serve a useful contact and communication (lobbying) purpose?
While people in such positions (particularly the oversight and regulatory functions) often begin their terms with a perception of the issues that reflects the government’s view, very often sociologists and other observers have noticed what is sometimes referred to as the “capture phenomenon” where the regulator bureaucrat has so much interaction with the parties they are supposed to regulate, that eventually their perceptions and positions evolve to reflect more and more the stances of those they are supposed to regulate. Some such bureaucrats (e.g., diplomats) even go on to write books about the topics and become activists for the causes they believe in. One never knows, but it is conceivable that if such a position was created in Canada, the occupant(s) may eventually become authoritative and effective advocates for our cause either while inside the job, or after. But then again, maybe not. Interesting to contemplate though…
ParticipantHi Folks,
My son was diagnosed in 2003. However, before the specialist gave us the diagnosis, my wife and I were already researching. Our research led us to the DSM, ABA, etc. The Ontario “Preschool Autism Program” at the time was providing IBI/ABA programing (and direct funding) to families. The Ottawa Branch of the Ontario Autism Society provided us with an information package. The social worker at the hospital referred us to the Preschool Autism Program. And of course, there was FEAT BC. The website, and the people. FEAT BC provided us with much helpful background and information.
Why do I mention this? Well, some media coverage is now coming out about the budget and the millions being allocated to the creation of the new website. Here is one news report:
Montreal groups who deal with autism react to Ottawa’s plan to fund national autism strategy
If you watch the video, there is a clip, I believe, with someone from the organization in Montreal that will be receiving lots of money to contribute to the creation of this new website. In one clip he suggests that such a new website with information is necessary because there’s nothing out there. He suggests that there are “no resources”, “no information on where to get services”, “no library”, “no tools”, etc. Good grief! It seems to me that what he said is misleading and not entirely accurate. There is lots of information that is available….one just has to look, and look, and look.
What I find really confusing about the press release that was issued and the wording in this story is the reference to “The goal is to give families in all regions better access to reliable, evidence-based resources once they’re hit with an autism diagnosis.” What does that mean? Is the “resource” in question the information about ABA, or it is the provision of the ABA (i.e., the therapy team of therapists, etc…)? It seems like all they will provide is information, and a library where you can borrow things (presumably books, manuals, teaching aids, etc.). If that is it, why don’t they say they will provide “information” instead of “resources”?
However, the suggestion that there is nothing out there is a direct critique of the already existing federal government website that was created following the federal Health Minister’s announcement of the creation of a “dedicated autism webpage” back in 2006. So after 12 years in cyberspace, it has been described as “nothing”.
ParticipantHi Folks,
Has anyone seen any public discussion or reaction in the autism community about the budget provisions dealing with autism that were announced yesterday? I have not seen anything apart from a news release of two of the funding recipient organizations (see below).
It is interesting to note that the Canadian Autism Partnership Project (CAPP) that Mike Lake, the Conservative Party and some of the CASDA folks promoted over the past two years requested $19 million over five years. Yesterday the government announced $20 million. I suppose the government MPs will now claim their spending plan is better because there is more money. If I read the press release correctly, it seems that there will be another website. All the discussion of “resources” is actually referring to content on a new website. However, none of the content will actually be anything new, as it will consist of database inventories and listings of information, listing of services, etc. I get the impression that they are talking about repackaging or formatting the already existing information…sort of like “old wine, old bottle….but a new label!”
The wording in yesterday’s budget and in this press release is interesting. For example, in yesterday’s budget document, there is this sentence: “Due to the varied nature of how the condition presents in different people, there are no clear best practices for managing the condition that apply to all sufferers equally.” What does that mean, exactly? Why was this sentence included in the budget document? Supposing the condition being discussed was not autism, but cancer…how would the sentence be understood? It seems to me that the government is using the sentence to present an excuse for not doing anything. For some reason equality of affliction is suddenly important. Since everyone is affected differently and no two people with autism are exactly the same, then there is no way to assert that there is a universal “best practice for managing the condition”. Hence, the best the government can do is set up a website for you, as if all the other websites about autism in cyberspace that have served you to date are…no good anymore.
Similarly, the press release makes it sound like a “curated online library” will reduce “regional disparities” and offer “equitable access across the country”. Huh? I was under the impression that regional disparities and access inequality across the country had to do with some provinces offering some services and programs to local residents, while other provinces did not (which resulted in autism migration from one province to another as some families moved to access what they thought was better for their child). But now I am confused. If I understand the press release correctly, it was the information about programs and services that was not effectively available online which was causing regional disparities and access problems. I thought my internet connection here in Ottawa provided me with access to all autism websites across the country. I did not think that I had any such internet-based access to information problems. But maybe I completely misunderstand what the press release is trying to communicate. In any event, I’m so glad the press release quotes someone as pointing out that this initiative will help “avoid harmful misinformation in the online arena”. I hope it will clear up misinformation in other places too…like government documents, press releases, etc.
By the way, it was on November 21, 2006, that federal Health Minister Tony Clement made his autism announcement that included the creation of “a dedicated page on the Health Canada Web site to guide the public to ASD information available through the Canadian Health Network and other resources”. You can find the archived press release from 12 years ago here:
Anyways, I’m looking forward to seeing how the CAPP folks will assess this alternative government initiative.
https://globenewswire.com/news-release/2018/02/27/1396511/0/en/Pacific-Autism-Family-Network-and-Miriam-Foundation-Receive-Federal-Funding-to-Help-Canadians-Impacted-by-Autism.html
<h1 class=”article-headline”>Pacific Autism Family Network and Miriam Foundation Receive Federal Funding to Help Canadians Impacted by Autism</h1>
<h2 class=”subheadline”>Government Invests in National Resource and Exchange Network to Support Canadians Impacted by Autism and Intellectual and Developmental Disabilities</h2>
Ottawa, Ontario, Feb. 27, 2018 (GLOBE NEWSWIRE) — The movement to assist Canadians living with autism, intellectual and development disabilities, and their families gained ground today when the government of Canada announced an investment of $20 million over 5 years as part of the 2018-2019 federal budget.The funding will be used to develop two new initiatives to support the needs of Canadians experiencing autism spectrum disorder and their families. This will include $10.9 million towards the creation of an Autism-Intellectual Disability National Resource and Exchange Network (AIDE) which will provide credible and evidence-based resources for individuals and families living with autism and intellectual disabilities. Led jointly by Pacific Autism Family Network and Miriam Foundation, AIDE is the first of its kind in Canada, and will be available in a curated online library, reducing regional disparities and offering equitable access across the country.
“This investment is a historic step in helping Canadians living with autism and intellectual disabilities,” said Sergio Cocchia, Chair of Pacific Autism Family Centre Foundation. “We commend the federal government for placing importance on the development of an innovative solution that will not only help improve quality of life for Canadians living with autism and disabilities, but also navigate and avoid harmful misinformation in the online arena.”
Today, over 515,500 Canadians are diagnosis with Autism Spectrum Disorder, affecting an estimated 1 in 68 children across the country. Despite these numbers, Canadians remain at an unfair disadvantage relative to our global counterparts, with countries like the United Kingdom and Australia adopting comprehensive, national autism strategies, and 47 states in the US with legislated specific autism mandates.
In contrast, Canada is widespread with systematic barriers and regional fragmentation, preventing families from accessing the information, care and resources required to obtain and navigate a diagnosis, ultimately leading to lifelong challenges that wreak emotional, social and economic havoc. Consequently, recent Canadian reports indicate access to information is top of mind for individuals with Autism Spectrum Disorder and their families, with 74% ranking better access to information as a top priority.
“With access to reliable and credible information currently lacking and varying widely, families and people living with Autism Spectrum Disorder face unfair pressures, considerable stress, and disproportionately high costs upon receiving a diagnosis,” said Wendy Lisogar-Cocchia, co-founder of Pacific Autism Family Network. “It is time Canada steps up to the plate to deliver these much-needed resources, and this commitment from the Canadian government makes this possible.”
“AIDE will offer credible, reliable and evidence-based resources – tailored to impacted Canadian families and individuals, not academics – and available in a curated online library,” added Warren Greenstone, President and CEO, Miriam Foundation. “In addition, AIDE will reduce the disparities that Canadians face across the country and offer equitable access regardless of whether you live in Kamloops, Sherbrooke or Halifax.”
The $10.9 million investment will support the development and launch of the AIDE, which includes a centralized website and online portal, resource library, electronic asset maps, and hub-to-hub network, ultimately addressing the shortfall of resources and supports available to Canadians and families living with autism. The exchange will be built upon the touchpoints of “intervene early, intervene often, and intervene across the lifespan.”
<p align=”center”>-30-</p>
About Pacific Autism Family Network
Pacific Autism Family Network (PAFN) is a first-in-North America charitable organization with a mandate to serve the lifespan needs of individuals and families affected by Autism Spectrum Disorder and all related disorders. Founded by parents Wendy Lisogar-Cocchia and Sergio Cocchia, with the vision to break down barriers to access across the province, PAFN has collaborated with over 60 organizations to bring together essential lifespan needs for those affected by Autism, all within one network. In late 2016, PAFN opened their first location – the 60,000 sq.ft GoodLife Fitness Family Autism Hub in Richmond, and will open smaller satellites in other areas of B.C. in 2017. The network ensures that all British Columbians have access to state-of-the-art resources for assessment, treatment, education-support and research, providing a “one-stop-shop” for families looking for help in their navigation of available information and services.About Miriam Foundation
For over 40 years, Miriam Foundation has been dedicated to ensuring that greater insight and new research improve the quality of life for all those affected with autism spectrum disorders (ASDs) and intellectual disabilities (IDs). The Foundation is committed to raising and investing funds, and providing the leadership required to: create and support developmental, clinical, vocational, residential, and respite programs for children and adults living with ASDs and IDs; offer education and training to professionals, caregivers and family members; foster specialized research focusing on improving diagnosis and developing new treatments and interventions for people with ASDs and IDs; and deliver social and recreational activities to promote inclusion.ParticipantHi Folks,
So today is the annual “Budget Day” in Ottawa. It often takes a while to digest the stuff and figure out what may or may not affect one community or another, but here is something of note.
From the “Budget Plan” document at:
https://www.budget.gc.ca/2018/docs/plan/toc-tdm-en.html
file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/budget-2018-en.pdf
Throughout the 369 pages the word “autism” comes up 19 times.
At page 174 we find the following paragraph:
Support for Canadians Impacted by Autism Spectrum Disorder
Autism spectrum disorder is a complex, lifelong neurodevelopmental disorder that can have serious health, social and financial consequences for Canadian families.
Through Budget 2018, the Government proposes to provide $20 million over five years for two new initiatives to better support the needs of Canadians experiencing autism spectrum disorder and their families. This will include the creation an Autism-Intellectual-Developmental Disabilities National Resource and Exchange Network (AIDE) to develop online resources, an inventory of services, employment opportunities and local programming for families across the country, based on their specific needs. The Network would be led by the Pacific Autism Family Network and the Miriam Foundation. Funding of $9.1 million will also be provided to the Public Health Agency of Canada to support community-based projects that will support innovative program models, help reduce stigma, and support the integration of health, social and educational programs to better serve the complex needs of families.
At page 213 there is a table which indicates on the line titled “Support for Canadians Impacted by Autism Spectrum Disorder” that there will be $5 million spent next year, followed by $4 million in each of the subsequent four years. To me, that adds up to $21 million, but the “total” column says “$20 million”. Either there was a misprint and the first number was supposed to be a 4 instead of a 5, or they are already signaling that they don’t intend to actually spend what they say they will.
Further at pages 263 and 267 we see these paragraphs:
Supporting the Health and Well-Being of Canadians
Policy Landscape
Canada presently faces several public health challenges, including problematic substance use disorder, which is of particular concern. Understanding how these challenges affect different people differently is critical to designing effective policy solutions.
Canadian Families Affected by Autism Spectrum Disorder
Autism spectrum disorder is a complex, lifelong neurodevelopmental disorder that has serious health, social and financial consequences for Canadian families. The estimated prevalence of autism spectrum disorder in Canada is approximately 1 in 94 children aged 5 to 17 years. Studies concur that boys are almost five times more likely than girls to be diagnosed with autism spectrum disorder. Canadians affected by autism spectrum disorder regularly face systemic barriers in their pursuit of reliable information, care and resources. Due to the varied nature of how the condition presents in different people, there are no clear best practices for managing the condition that apply to all sufferers equally.
Further, at page 267 and 268 we see these paragraphs:
Impacts of Budget 2018 Investments
In Budget 2018, the Government is committed to finding evidence-based and effective solutions to these public health challenges, recognizing that there is no single option that is appropriate for everyone affected.
Support for activities that improve access to information and to research evidence on best practices and treatments for people living with autism is expected to positively affect those diagnosed with the disorder and their families and caregivers. This investment will also allow for the exploration of new and innovative ways to improve the quality of life of individuals and families affected by autism as well as their caregivers who are likely disproportionately women.
Further, at page 280, there is some discussion of the gender issue:
Chapter 4: Autism-Intellectual-Developmental Disabilities National Resource and Exchange Network
While studies can be found to show that males are four to five times more likely to be diagnosed with autism spectrum disorder than females, information on the prevalence of autism spectrum disorder and the intersection of race, sex, and geographic location is not available. As such, no gender-specific or intersectional approaches to interventions and services have been developed.
Further, at page 336 there is a table that suggests that the Public Health Agency of Canada will be allocated $4 million per year for the next five years ($20) to do “Support for Canadians Impacted by Autism Spectrum Disorder”.
In a separate document, titled “Tax Measures: Supplementary Information”,
https://www.budget.gc.ca/2018/docs/tm-mf/tax-measures-mesures-fiscales-2018-en.pdf
There is a reference to autism at page 10, in relation to training expenses for an animal (e.g., dog):
Medical Expense Tax Credit – Eligible Expenditures The Medical Expense Tax Credit (METC) is a 15-per-cent non-refundable tax credit that recognizes the effect of above-average medical and disability related expenses on an individual’s ability to pay tax. For 2018, the METC is available for qualifying medical expenses in excess of the lesser of $2,302 and three per cent of the individual’s net income.
The list of eligible expenses for the METC is regularly reviewed in light of medical or disability-related developments.
The METC currently provides tax relief in respect of certain expenses incurred for an animal specially trained to assist a patient in coping with the following impairments: blindness; profound deafness; severe autism; severe diabetes; severe epilepsy; or a severe and prolonged impairment that markedly restricts the use of the patient’s arms or legs. In order for expenses to qualify for the METC, animals must be provided by a person or organization one of whose main purposes is providing this special training.
Eligible expenses are: the cost of such an animal; costs for its care and maintenance, including food and veterinary care; reasonable travel expenses incurred for a patient to attend a facility that trains patients in the handling of such animals; and reasonable board and lodging expenses for a patient’s full-time attendance at such a facility.
Budget 2018 proposes to expand the METC to recognize such expenses where they are incurred in respect of an animal specially trained to perform tasks for a patient with a severe mental impairment in order to assist them in coping with their impairment (e.g., a psychiatric service dog trained to assist with post-traumatic stress disorder). For example, these tasks may include guiding a disoriented patient, searching the home of a patient with severe anxiety before they enter and applying compression to a patient experiencing night terrors. Expenses will not be eligible if they are in respect of an animal that provides comfort or emotional support but that has not been specially trained to perform tasks as described above.
This measure will apply in respect of eligible expenses incurred after 2017.Finally, I did a search on the main document for the word “strategy”. It comes up 110 times in relation to existing and new “strategies”, including references to a new intellectual property strategy, new entrepreneurship strategy for women, and the development of a new engagement strategy for men and boys to promote gender equality, etc. I could not find any reference to an autism strategy.
So what does this mean? What is new for the autism community? It sounds like the references to “online resources” means another website, and the programs to “reduce stigma” is more autism awareness-raising. My initial reaction is that this is to a certain extent “deja vu”. When Health Minister Tony Clement (as he then was) made a five-point announcement at a press conference the day before our autism demonstration in 2007 on Parliament Hill, he also announced the creation of a website (https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd.html). The website already lists “supports”, but it now sounds like it will be expanded to become an inventory of services, although I suspect that such inventories may already be available on some provincial “Autism Society” websites. It will be interesting to find out which stakeholders made what suggestions to the Department of Finance during their budget consultations, who will claim credit for what, how stakeholders and community members will react to the autism elements of this budget, and how the opposition and the government MPs will spin the matter. What is obvious is that the government is not taking any bold steps, but when the next election comes, they will claim that the autism box on their list of accomplishments was checked and something was done to “improve the lives of Canadians living with autism spectrum disorder”. It is of course possible that in my review of the budget documents I may have missed something. If so, I’m sorry – it was not an intentional oversight on my part.
ParticipantHello Franca and Laurie,
Thanks for your question and input. The issue of what are the programs and corresponding budgets in each province across the country is an excellent one. It would be very interesting to see. I regret to say that I do not have this information.
Back in 2006 the Library of Parliament Research Branch produced this summary table. Unfortunately, the reference to “funding” referred to what the families would be getting, and not the government budget.
https://lop.parl.ca/content/lop/researchpublications/prb0622-e.htm
I imagine that the Canadian Autism Society has probably assembled this type of information to analyze and use as part of their campaign for a National Autism Strategy (given that the wide discrepancies of services across the provinces has resulted in many stories over the years of “autism migration” for better services). However, I can’t seem to find anything about this issue on their website. Perhaps it is something they will get to once their current efforts in the promotion of “autism awareness” T-shirt sales reaches their targets. If they have not done such research and put the data together, then I hope they will seriously consider doing that, or at least find out who else might have already done it so they don’t reinvent the wheel.
However, there is one thing that really needs to be understood when it comes to government spending. At the beginning of the year, there’s the announcement of the budget. At the end of the year there’s the audited financial statements. There is often a big difference between what the governments say they will spend on something, and what they actually do.
I remember learning this lesson when it comes to autism programs very early following my son’s diagnosis. While we were on a “waiting list” for either direct funding or therapy services, my wife and I were spending a small fortune in the private sector on treatment for our son. At the time the Ontario “Preschool Autism Program” claimed that they had a lack of resources and we were one family out of 1,200 on a waiting list. However, the next year the Auditor General of Ontario issued a report (2004 I think it was) stating that there was $16 million “unspent” in the program. Yeah…lack of resources. Sure.
At the time, the Ontario government of Dalton McGuilty (oops, I mean McGuinty) announced a whole bunch of new autism resource allocations. Lots of press releases and press conferences, etc. I remember talking to one journalist who told me that “the problem is now solved”. Well, about two years later we organized a protest in front of McGuilty’s constituency office, and the NDP critic Shelley Martel came to Ottawa to join our rally and speak. She had done some “access to information” act requests and indicated at the rally that she found out that millions of dollars that had been previously announced for autism programs were not spent on autism programs but were diverted elsewhere.
This is not uncommon in government. I remember when I was a new officer with the federal government’s bankruptcy branch (Consumer and Commercial Affairs at the time), one month before the end of the fiscal year the deputy superintendent (a guy I won’t name, but he subsequently became the Chief Electoral Officer of Canada) called a number of his staff into a meeting where announced that there was still a million dollars unspent in the budget and he asked for a brainstorming session on how to spend the money. One bright senior officer asked “What for? There’s a national deficit”, to which the boss replied something along the lines of “Yes, I know, but we have a mandate to implement and it is our responsibility to spend the money we were allocated to pursue the mandate”. As a result we all got new stationary and chairs, etc. I remember that the old staplers were excellent heavy metal ones. One day they took them away (to be stored in surplus or thrown out I guess) and gave us these new cheap plastic ones that jammed up so often that I suspect many civil servants took “stress leave” because of all the subsequent stapler trauma.
I remember a few years ago the current Ontario government announced a new program that was going to reduce the treatment cut off age from six to five. I complained to my MPP, and I remember him telling me some unmitigated BS on the phone about having to “go with the evidence”. I tried to politely suggest to him that his “evidence” was cherry-picked by his party’s research bureau and bureaucrats who were graduates of the “How to Lie With Statistics” course from the local public policy manipulation institutes. After several months of intense campaigning by many parents in the autism community (and a lot of bad press), the government flip-flopped and announced a reversal and big increase in spending on autism programs, etc. My MPP did not call me to tell me about any “new evidence”…which just goes to show that in politics “evidence” is only one factor and that “following the evidence” is occasionally cynically trotted out by some politicians whenever they think they can use it to stifle serious discussion and make themselves look like responsible types.
Personally, I don’t believe that the amount they say they will spend on autism programs will actually be spent on them, and time will tell when the public accounts (audited financial statements) are subsequently produced (if anyone from our community actually bothers to look them up). As the mother in the Global News story asked, “where is it all going?”.
ParticipantHi Folks,
Global News did a report about an autism protest in Quebec yesterday. It is available here:
Parents protest and call on Quebec to step up autism services
ParticipantHi Folks,
I just came across an interesting article and study about the lifespan of adults with autism and the risk of death by injury. I bring it to your attention because I suspect many of us did not anticipate this (I certainly did not), and I post it here because I do not recall seeing anything in any public policy debate about the average length of life for people with autism, any studies on the issue, the risk of injury causing death for people with autism, and the implications (which are potentially huge). This is not a pleasant topic, but something we should be aware of and can’t avoid.
http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2017.303696
https://www.cnn.com/2017/03/21/health/autism-injury-deaths-study/index.html
ParticipantHi Folks,
One of the great things about out democracy is that a few parties take turns running the show, and (apart from a few exceptions), one of the great checks and balances against the inevitable corrupting effect of power is that those in power tend not to stay there forever. Being relegated to the opposition benches after a time in power is a good thing for many politicians (although they won’t admit it) because it gives them some more time to reflect and get humble. Personally, I always find it interesting to note the creative and imaginative things that opposition members think up once they are in opposition, and not while they were in power and could actually do something.
One example, many years ago, was that of Andy Scott, the MP from New Brunswick. As you may recall, he was a Cabinet Minister during the Chretien years. During that time, I am not aware of his actually have done anything on the autism front. I did read an article once in the newspaper that said he mentioned the word “autism” once or something, and I tried to contact his office to follow up, but his office did not bother to reply to me. At that time, if he actually did anything, it was behind closed doors and somewhat secret. However, once he was in opposition…oh, boy,….suddenly he was a crusader who tabled a Motion for a National Autism Strategy or something, provoked debates in the House, and temporarily assumed the role of champion in the House for our community. The Motion was passed, but was non-binding (motions are not law), and proved to be symbolic and was quickly forgotten.
Any other examples? Yes! Today, it is Pierre Poilievre, the Conservative MP. When he was first elected, he was in opposition and he came to our autism rallies and denounced the Liberals for ignoring the plight of Canadians with autism with all his might. After a little education for him about the community’s challenges, he had an Op-Ed published in the influential Ottawa weekly “The Hill Times” in which he stated that the government needs to amend the Canada Health Act to ensure that autism treatment is provided by the provinces under Medicare. It was clear, unambiguous and in black and white. He accused the Liberals of hypocrisy, but then he showed that hypocrisy ran in his veins too. A few years later Poilievre was a Cabinet Minister on the government side. Liberal opposition member Shawn Murphy tabled a Bill that would do precisely what Poilievre previously wrote was needed (note: Murphy did not table the Bill while his party was in power, but only after the election when he was in the opposition benches). And guess how Poilievre voted? Unfortunately, he voted against it.
And now that Poilievre is in opposition again, suddenly the plight of the disabled is a cause of concern for him again. So on Thursday, February 15, 2018, he rose in the House and made this statement:
Persons with Disabilities
Mr. Speaker, imagine if someone told us that the harder we work, the poorer we will become. That is exactly what governments tell people with disabilities. When they get jobs, they suddenly lose benefits and immediately start paying taxes, sometimes losing more than they gain. All parties and levels of governments are to blame.
The opportunity for workers with disabilities act seeks to solve the problem by requiring that Finance Canada calculate how much workers lose for every $1,000 they earn. If they lose more than they gain, the finance minister would be required to propose changes to federal taxes and benefits to fix it. Provinces would be required to meet the same standard as a condition of receiving $13 billion of social transfers.While the bill would not micromanage provincial programs, it would instill one simple principle: that people with disabilities must always be allowed to earn more in wages than they lose in taxes and clawbacks._______________So what is this Bill he is referring to? It is Bill C-395, a Bill he has now sponsored which has the long title: “An Act to amend the Federal-Provincial Fiscal Arrangements Act” and the short title: “Opportunity for Workers with Disabilities Act“. It was tabled and given first reading on February 5, 2018. The text of the Bill can be read here:So…on the assumption that this Bill will die on the Order Paper when the next election writ is dropped (as most opposition Private Members Bills do), imagine that after the next election Poilievre is back in Cabinet with his government in power, and some MP in the opposition tabled a Bill that was word-for-word a replica of this Bill C-395… would Poilievre vote for, or against? Of course, it depends on what his leader and party whip would tell him (and his party caucus) to do at the time, but if history is any indication, I suspect he would vote against it. In fact, if I were a betting man, I would bet the house on it!In the meantime, it will be interesting to observe how much he invests in the promotion of the Bill and where, when, and how, he chooses to promote his association with the Bill’s contents. While the Bill appears to have some genuine merit which could potentially benefit many members of the autism community, after years of observing Poilievre and other opportunistic politicians, it is hard to get excited,especially when history demonstrates that the chances of disappointment are probable. -
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