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Andrew Kavchak
ParticipantHi Folks,
In my previous post I made a reference to the Minister of Justice…it should have been the Minister of Health. Sorry for the error and any confusion.
Regarding the CAPP Executive Summary, I just took a look at it, and wrote the following…
Here are some comments about the Canadian Autism Partnership Project (CAPP), and the information about it (including the business plan executive summary) on their website at:<i id=”yui_3_16_0_ym19_1_1482318697787_131907″>Summary of the Summary:</i>1. The home page claims that “<i id=”yiv8819991563yui_3_16_0_ym19_1_1482318697787_6821″>Canada has spoken. Our consultations have resulted in unified agreement that moving forward with a Canadian Autism Partnership is essential if we are to collectively improve better outcomes for individuals and families living with autism.</i>”The page goes on to suggest that the solution is the “Canadian Autism Partnership Model”.2. In November, 2016, the federal Health Minister was presented by the “Working Group” with a “business plan for a partnership model”. The Executive Summary of the business plan is on their website. It is 12 pages long.3. At the beginning, the plan has a “vision” and “mission” (to make things better, etc.).4. At page 1, the plan is somewhat described as creating “efficiencies” which include “a national platform for multi-sectoral collaboration”, “knowledge translation”, and “broader influence on the research agenda”, and of course, a strategy to address the “specific needs” of the indigenous population.5. Page 3 has a diagram which reflects the “CAP Collective Impact Process”. <i id=”yiv8819991563yui_3_16_0_ym19_1_1482318697787_114175″>(Comment: It is in fact a variation of David Easton’s 1950s “Systems Theory” which originally described all bureaucratic processes as involving three elements: “input – process – output” and of course the output would be “feedback” or new “input” which would keep the process going in a self-sustaining perpetuity type model. Ralph Boren (of “When in Doubt, Mumble!” fame) subsequently updated the model to better reflect government bureaucratic procedures “hushput – mushput – flushput”.)</i>The CAP diagram has all the keywords: stakeholder, collaboration, complex issues, input form, agenda setting, engagement, “problem-solving(!), evaluation, measurement, monitoring, etc.6. Page 4 has a reference to “Complex Issues Initiative (CII)”.7. Page 5 addresses the “CAP Accountability Structure” which includes reference to a “Collective Impact Framework”, a Board of Directors, a National Director, an Advisory Council, Stakeholder Groups, a team of 11 staff members (they call these “FTE” – full time equivalent) to handle things like administration, finance and “engagement with Indigenous Peoples”.And the cost? $19 million over five years.<i>Comments and Concerns:</i>The CAP business plan document is a “high level” (i.e., extremely general and vague) document with little details and specifics. While the overall goal of trying to improve the lives of Canadians with autism (and their families) is certainly noble, worthwhile, and overdue, this document does not seem mention any of the specific issues that need to be address or give any concrete example of how they could be resolved in any reasonable time period.The primary big issues facing the autism community have been known for a long time and are easy to identify. They include:a) the lack of healthcare (Medicare) coverage for autism treatment (ABA/IBI),b) the lack of ABI/IBI in the school systems, andc) the lack of appropriate housing accommodation for the adults.The issue of healtcare was high profile when the Auton case was heard by the Supreme Court of Canada in 2004. That was a long time ago and the case had been ongoing since the previous century. In Ontario, the Deskin-Wynberg case raised the education issue and the SCC refused to hear an appeal. The housing issue is regularly in the media, and includes absolutely tragic stories such as the cases of parents killing their own children and themselves when they abandon hope.None of these issues were mentioned in the CAPP executive summary and certainly no discussion of how CAPP would help address these problems in any concrete way.Do we not already have adequate institutions for consultations, collaboration, problem-identification, and political decision-making across Canada? Is it necessary to create new institutions and positions with budgets and bureaucracies? Do other disorders, diseases, illnesses, syndromes, etc. have a similar model?There are several problems and risks with the adoption of this proposed plan. One is that the bureaucracy will be expanded and any concrete action to resolve the public policy and program gaps that currently exist will become even more remote. The issues already identified by the community will have to go back to the drawing board and start over at square one…this will not only delay things, but there is the risk that key and primary issues (such as the three listed above) will be side-tracked by other issues, which may (or may not) be of varying levels of priority (as perceived by different stakeholders) may result in further delays and confusion about what is really important and what is less important.Where there is a political will to do something, there is a way. When the PM and the Premiers and the Health Ministers, etc. “want something”, they can make it a priority (even a “legacy issue”) and make things happen. I was a federal civil servant for 25 years. I’ve seen it happen in several departments.One risk (and problem) is that the creation of a new bureaucracy is that it makes the ultimate resolution of the big problems more difficult, but it gives the impression that something is being done, when in fact, at the ground level, nothing changes.I would much more prefer a “business plan” that identifies the key problems and outlines how they can be addressed and resolved, through appropriate political decision-making and the allocation of resources,….now.Personally, I have been protesting on Parliament Hill, on and off, for a National Autism Strategy, that would clearly identify the problems, and provide the public policy and programs to fix them. I believe the administrative bureaucracy to do these things already exists. The only reason these key problems are not being directly addressed is because of the lack of political will.Those are just my own thoughts at this time (December 21, 2016).Sincerely,Andrew KavchakOttawaParticipantHi Folks,
Well, more stuff in the House of Commons to scratch our heads about.
On Tuesday, December 13, 2016, there was the exchange below between Mike Lake and the Minister of Justice about…an “expert working group” and the creation of a “Canadian autism partnership”… The discussion was so important that the Speaker of the House appeared to cut off the Minister after the usual 60 seconds (or whatever the limit is before the microphones are shut off).
All we want is Medicare coverage for autism treatment, and reasonable supports for adults with autism. Here in Ontario I just called our provincial offices to inquire about a group home facility down the road for my teenage son and was told that once we place him on the “waiting list” when he will be 18, the average “waiting period” is 7-10 years before a spot becomes available.
Why can’t these questions be directly addressed, instead of creating more committees and alliances, etc…? Have we not had enough consultations? Is this how the governments deal with all other diseases, disorders, conditions, syndromes, etc…?
You can find out more about Lake’s proposed autism partnership at: http://www.capproject.ca/index.php/en/about-capproject/project-objectives
Perhaps I am missing something, but in the objectives, there does not seem to be anything concrete apart from setting up some sort of permanent state of consultation.
Although several people joined me in 2004 in protesting outside the Ottawa Conference Centre while the PM (Martin) and Premiers were negotiating a Health Accord, they did not include any reference to autism treatment and services in Medicare. Over the past few days the PM (Trudeau) and the Premiers were again discussing health funding, and the media reports that there was no agreement. It does not seem that autism was on their agenda either.
Cheers from Ottawa.
Andrew Kavchak
Mr. Speaker, in our balanced budget of 2015, Prime Minister Harper and finance minister Joe Oliver established an expert working group tasked with the creation of a Canadian autism partnership to support those living with autism, their families, and caregivers. The current leader of the opposition, who was then health minister, officially launched the working group that summer. This world-leading team of Canadians has completed its work and reported back to the Liberal health minister with a business plan and a request for support
Can Canadians living with autism and their families count on the minister’s support for this important initiative?
Mr. Speaker, I thank the member opposite for his very important work on this matter.
He certainly knows that autism spectrum disorder has a significant and lifelong impact on individuals and their families. We have made significant investments in this area, for instance, through the Canadian Institutes of Health Research. The government has invested more than $27 million on direct research related to autism in the last five years.
We are committed to working with all partners to help Canadians with disabilities to participate in our society, including work with the Canadian Autism Spectrum Disorders Alliance. They bring the perspective of those living with autism and their families.
I have received the proposal indicated by the member, to establish a Canadian—
ParticipantHi Folks,
I just found out about this online petition on the Parliament of Canada website which is open until February 15, 2017.
It can be found at: https://petitions.parl.gc.ca/en/Petition/Details?Petition=e-596
Please consider signing (registering your support) and spreading it around.
Cheers,
Andrew
The Petition reads as follows:
<h2>Petition to the Government of Canada</h2>We, the undersigned, <b>citizens of Canada</b>, call upon the <b>Government of Canada </b>to make autism treatment and therapy in Canada free, thus making it an essential service.ParticipantHi Folks,
Well, guess what? After all these years, the things we have been saying over and over and over…have been confirmed in a new study. How many times do we have to say it? …..Besides being the moral, ethical, legal, and (what should be the “politically”) correct thing to do, providing IBI/ABA also happens to be an investment that is in our collective economic interests.
But the politicians in charge of the public purse and the healthcare and education bureaucracies just don’t seem to “get it” or give a damn. Maybe they just forgot to renew their subscriptions to the “JAMA Pediatrics” journal. Hopefully their children will give it to them for Christmas or something.
Cheers,
Andrew Kavchak (Ottawa)
From the Toronto Star
https://www.thestar.com/news/gta/2016/11/14/timely-autism-treatment-better-for-kids-taxpayers-study-finds.html
<h1 class=”article__headline” data-reactid=”91″>Timely autism treatment better for kids, taxpayers, study finds</h1><p data-reactid=”93″>Cutting wait times for autism treatment has long-term benefits for kids and is more cost-effective, study finds.</p>By ANDREA GORDON Education ReporterMon., Nov. 14, 2016Eliminating wait lists for intensive autism treatment is not only more effective for children who need it, but translates to taxpayer savings down the road, Ontario researchers have found.
Their study, published Monday in the journal JAMA Pediatrics, is the latest to find that timely access to treatment has long-term benefits for kids and is more cost-effective. They say it’s the first to model the economic effect of wait times.
“The longer that families have to wait, the less effective these services are and the less we get to reap those economic rewards,” said senior author Dr. Melanie Penner, a developmental pediatrician at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
Using 2012 Ontario data, the researchers looked into the potential long-term impact of eliminating wait lists for intensive behavioural intervention (IBI) provided by the province. At the time, wait lists averaged 2.7 years, similar to what they were last spring.
They found that treating kids immediately without wait times resulted in cost savings of $53,000 for the province up until age 65. Their economic model found that removing wait lists also translated to savings of $267,000 for society, which was primarily because of children being able to live more independent and productive lives as a result of treatment.
Penner said the result is “pretty stunning” because improved health care policies usually come with higher costs, “and with this one we are actually getting cost savings.”
But it does require that the government “take the long view” on when they see the cost benefits, she said.
Based on the 1,700 children on Ontario wait lists in 2012, the study projected that eliminating wait times would have amounted to total savings of $90.1 million for the province, and $454.4 million for society. Costs for the province are associated with health and social services, while the larger societal costs are primarily related to caregiving, foregone wages and reduced productivity.
The numbers reaffirm that governments and society get the best return on investing in IBI when children get quick access to it, says Penner.“The flip side of that is that with decreased access, the value of that investment goes down.”
While the data and study model are new, the link between timely service and better returns “is not new information — it’s something everybody has understood for a long time,” said Bruce McIntosh, president of the advocacy group the Ontario Autism Coalition.
While the study coincides with the province’s goal of reducing IBI wait times under its new autism program announced last spring, McIntosh notes it does not address the controversial policy that came with it — the decision that children age 5 and older are no long eligible for any IBI.
Toronto parent Angelina Palmisano said the findings don’t surprise her but added there are “unacceptable” delays in accessing most autism services, not just IBI, which means many children aren’t getting any help when it’s most beneficial to them and cost-effective for the province.
Her son Keith, 5, was not considered severe enough to qualify for IBI treatment, though he has a sensory processing disorder and developmental challenges that affect his fine motor skills and eating.
He has waited two years for provincially-funded applied behaviour analysis and needs occupational therapy, says his mother.
“Autism doesn’t go away,” says Palmisano. “If you have a diagnosis of autism in this province you should be looked after.”
University of Calgary researcher Jennifer Zwicker said while lifetime cost projections are tricky and subject to many assumptions, the Ontario researchers highlight the economic impact of children waiting for autism services.
“This study is saying that if you are waiting longer as a child who is developing, when you do get that IBI treatment it may be less effective and have less impact than if you got it earlier,” said Zwicker, director of health policy at the university’s school of public policy.
“It’s a good narrative on how we allocate resources does have an impact.”
ParticipantHi Folks,
As you may be aware, the Federal government has suggested it is committed to developing new planned accessibility legislation to “promote equality of opportunity and increase the inclusion and participation of Canadians who have disabilities”.In developing this new legislation, the Government of Canada is consulting Canadians both in person and online. The consultation process will run until February 2017, and includes a variety of mechanisms, including: online surveys, public consultations, etc.More information on the consultations can be found here:
Consultations are planned for every province and territory, beginning in September 2016 until February 2017 (list of dates and locations below).Apparently, the in-person public consultations will ask participants the following three questions:1) What are the main barriers to accessibility that Canadians with disabilities face?2) What would it take to fix those barriers?3) How can we change attitudes in Canada to better include and respect people with disabilities?I wonder whether they consider the lack of access to healthcare and IBI/ABA through Medicare to be an “accessibility” issue?Public Consultations – Date and LocationWednesday, October 12thOntarioThunder BayThursday, October 13thAlbertaCalgaryThursday, October 20thNew BrunswickMonctonThursday, November 3rdNewfoundlandSt. John’sMonday, November 7thBritish ColumbiaVictoriaThursday, November 10thQuebecQuébec CityWednesday, November 16thQuebecMontrealSaturday, November 26thBritish ColumbiaVancouverWednesday, November 30thOntarioOttawaThursday, December 8thPrince Edward IslandCharlottetownFriday, December 9thNova ScotiaHalifaxWednesday, February 8thOntarioTorontoParticipantHi Folks,
I apologize for the mess in the previous post. Sometimes one can “copy and paste” and things work out…and other times, well, something else comes out.
Cheers,
Andrew
ParticipantHi Folks,
The CBC reported a few days ago that the provincial Premiers asked the Prime Minister for a meeting to discuss health care funding. It sounds to me like an opportunity to raise an issue….we have an elephant in the room here that they are pretending does not exist! I wrote this letter to one newspaper…
<p id=”yui_3_16_0_ym19_1_1475368851843_2912″ style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;”>Dear Editor,</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2818″ style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>The provincial Premiers are reported in the media to have collectively written to the Prime Minister requesting a meeting on heath care funding before the first ministers meet to discuss climate change this fall. At issue is the amount of health care transfer payments from the federal government. The last Liberal government of Paul Martin negotiated a “Health Care Accord” back in 2004 which involved transfers of additional billions of dollars from the federal government, for which the provinces agreed comply with specified service standards regarding a number of medical procedures. That agreement expired in 2014 and the Tories were not interested in negotiating a new one. It’s time is overdue. But there was one thing missing in the Accord last time that needs to be addressed: autism.</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>Until the cause and cure are found for this neurological disorder which can be devastating in severe cases, the evidence-based treatment of Intensive Behaviour Intervention therapy (based on principles of Applied Behaviour Analysis) must be considered a health issue and its provision covered by Medicare from coast to coast. Regrettably, that is not the case. In some provinces which offer IBI/ABA treatment, like Ontario, it is provided by Community Services departments which have a lack of resources and expertise, and a plagued with unconscionable waiting lists and inexplicable age “cut-offs” (typically at age six). This discrimination in our public health care system against Canadians affected by this disorder must cease. Kids don’t get to pick their disease and their parents don’t have the option of not paying their taxes.</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>The federal government and the provinces needs to stop ignoring the Standing Senate Committee on Social Affairs 2007 report “Pay Now or Pay Later: Autism Families in Crisis” and implement its recommendation to develop a funding formula to ensure that autism treatment is available to Canadians who need it through our public health insurance system. This request by the Premiers to have a health care funding meeting with the Prime Minister provides an opportunity to address and resolve this outstanding issue that has been a huge challenge for thousands of Canadian families.</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>Andrew Kavchak</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>ParticipantHi Folks,
Wow! The new website looks cool.
Just wanted to share this with you…I recently uploaded a video about the need for governments to move beyond “raising autism awareness” and undertake some “autism action”: https://www.youtube.com/watch?v=L3Azg3v3TUI
Earlier this summer I posted another video about the need for a National Autism Strategy: https://www.youtube.com/watch?v=UmG1-95PYIE
Cheers!
Andrew Kavchak (Ottawa)
ParticipantHi Folks,
Wow! The new website looks cool.
Just wanted to share this with you…I recently got a bit fed up with the never-ending campaign to “raise autism awareness” and the appearance that it is used as a cover by some politicians to do nothing (i.e., government (in)action). So I made this video on the topic: https://www.youtube.com/watch?v=L3Azg3v3TUI
Earlier this summer I posted another video about the need for a National Autism Strategy: https://www.youtube.com/watch?v=UmG1-95PYIE
Cheers!
Andrew Kavchak (Ottawa)
ParticipantHi Folks,
Well, here is another interesting autism story that sheds some light on the treatment of people with autism in this country and the lack of a comprehensive set of policies and programs to deal with the issue.
I recently heard this story on the radio and I've been thinking a lot about it lately.
http://www.cbc.ca/news/canada/ottawa/michael-neve-autism-hospital-group-home-1.3647305
Imagine this: in Canada's capital city, it makes the news when an adult with autism gets a spot in a "group home". Why? Because he has been waiting for the spot for three years while resting in a bed in the Ottawa mental hospital.
Just check out the figures in the article about the cost!
And then check out the part where it says that he was not the only adult with autism being kept in the mental hospital while waiting for a group home spot to open up. There are more. So, in a few years when the government finally has a group home spot that opens up for the others, will that make the news in the capital city as well?
It is understandable that some long term facilities may not be just waiting for our kids to come of age and that there may be a waiting period. But how long is reasonable? And what does society do with the adults in the meantime? Is warehousing adults with autism in a mental hospital with security guards, etc. the only solution? There has got to be a better way, that is also cheaper for society.
I never cease to be stunned by autism news. I suppose that by now, after a decade in the field, nothing should surprise me. But it does.
Last week, the Ontario government announced some sort of reversal of their previously-announced new autism program (the one that would involve reducing the cut off age for therapy from six to five). I remember speaking to my MPP on the phone just before that. I told him that the proposed plan was wrong-headed, and he replied that they had to "go with the evidence and the facts". What evidence and facts? The one his government made up? Well, after a lot of parents in the community made a fuss, the government decided they had to change the plan. I am not sure at this point whether the changes they announced are meaningful, but I wonder….what about the "evidence and facts" that they relied on in the first place? Suddenly, they are no good anymore? I guess not. I don't want to sound cynical and suggest that every time you hear a politician attempt to justify something they are full of BS, but the truth is that there is a whole lot of BS involved in politico-speak.
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