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Andrew Kavchak
ParticipantHi Folks,
Yesterday (Sunday) the federal NDP announced their election platform. As you may recall, CASDA issued a “blueprint” for a National Autism Strategy a while ago which it hoped that the federal parties would adopt in their election platforms. As I previously posted and outlined in an Op-Ed piece, I thought the CASDA blueprint had a major hole in it because it did not explicitly state that our community needs ABA treatment for autism covered by Medicare.
So what does the NDP platform say? See https://www.ndp.ca/commitments
In the section on “Extending Medicare to cover services you need” there does not seem to be word about it.
“Canada’s health care system today reflects the health care needs of the 1950s. Back then, New Democrats boldly transformed the health care system by guaranteeing that Canadians who needed to see their doctor or go to a hospital would not be faced by bills they couldn’t pay.
A decade of Conservative neglect has hurt our public health care system and eroded public trust. The Liberal approach – a patchwork of interventions and programs here and there – simply isn’t delivering the results that Canadians need. Too many Canadians, even those with private insurance, just aren’t able to get the help they need.
As it stands, the Canada Health Act is supposed to fund all medically necessary services that Canadians might need. But in reality, there are many kinds of medical services that Canadians need for their health and wellbeing that aren’t covered by public health care plans. As jobs with extended health benefits become harder to find, fewer people will have access to extended health care services.
You and your family deserve better. New Democrats believe that over the next decade, Canadians need a historic expansion of the services covered under our national health care system.
One in three Canadians has no dental insurance and over six million people don’t visit the dentist every year because they can’t afford to. Too many people are forced to go without the care they need until the pain is so severe that they are forced to seek relief in hospital emergency rooms.
We know now that good oral health is a critical component of overall good health – and that means our health care system should cover it, too. A New Democrat government will work together with provincial partners, health professionals, and dentists to develop a roadmap to including dental care in the Canada Health Act.
There’s a lot more to do to modernize our health system for today’s needs. Mental health support is an enormous unmet need across the country; a third of Canadians struggling with mental health challenges who have expressed a need for counselling weren’t able to get it. Eye check-ups are important for preventing vision loss and identifying other health issues – yet many, particularly children and seniors, don’t get regular eye care, or struggle to pay for the glasses that they need to function.
New Democrats believe that we need to work towards health care that covers us from head to toe. Mental health care should be available at no cost for people who need it, and everyone should be able to get regular eye care and hearing care. Canadians struggling with infertility should also have access to the procedures and care they need, no matter which province or territory they live in.
The long-term path to providing public coverage for these services will require strong federal re-investment in our health system with the knowledge that investing in preventative health services will ultimately save money and give Canadians the care they need to live healthy, full lives.”
So in the Medicare section there is no reference to ABA treatment for autism. However, in the “Removing barriers for persons living with disabilities” section the very last sentence is relevant.
“We can do much more to make Canada an inclusive and barrier-free place. As a start, New Democrats will uphold the United Nations Convention on the Rights of Persons with Disabilities and strengthen the Accessibility Act to cover all federal agencies equally with the power to make and enforce accessibility standards in a timely manner.
To help tackle the unacceptable rate of poverty among Canadians living with a disability, we will launch a full review of income securityprograms. When it comes to employment, everyone deserves a fair shot at a good job that fits their unique abilities. A New Democrat government will continue and expand employment programs to make sure that quality employment opportunities are available to all.
For Canadians facing a serious illness, we’ll make Employment Insurance work better by extending sickness benefits to 50 weeks of coverage and by creating a pilot project to allow workers with episodic disabilities to access benefits as they need them.
Canadians living with disabilities shouldn’t need to worry about the cost of prescription medication, how to find housing, or how to get their mail. In addition to putting in place a universal, publicly funded national pharmacare program that will offer full benefits to all Canadians, a New Democrat government will restore door-to-door mail delivery for those who lost it under the Conservatives and create affordable, accessible housing in communities across the country.
Finally, we will work with Canadians living with Autism Spectrum Disorder to develop and implement a national Autism strategy that will coordinate support for research, ensure access to needs-based services, promote employment, and help expand housing options.”
So the NDP want to consult with “Canadians living with [ASD]” to develop a strategy. Does “living with ASD” mean only high-functioning self-advocates who rarely, if ever, talk about the benefits of ABA, and who are often viciously opposed to it? Does does the NDP also propose to consult with parents of those who can’t speak for themselves? I wish they would have simply referred to consulting with stakeholders and clinical experts, etc. Does “ensure access to needs-based services” include ABA treatment for autism under Medicare? It might, but why not specifically say so? Why is it so hard, even for the NDP who in this platform want to extend Medicare coverage to dental and pharmacare, etc. to explicitly and clearly say “ABA autism treatment covered by Medicare”?
Why?
Perhaps it is because they used the CASDA blueprint as the basis for this one sentence at the end and the CASDA blueprint itself does not mention these key words either.
And how does CASDA feel about this one sentence in the NDP platform? I just checked their Twitter and Facebook pages and there is no mention of the NDP election platform.
ParticipantHi Folks,
Further to my last post and the comment about parents of newly-diagnosed children perhaps not being the best authorities when it comes to treatment for their children with autism, NBC news is reporting a case of one mother who…well, you have to read it to believe it.
ParticipantHi Folks,
Well, I suppose that with the Ontario provincial government’s autism program being under review and with only a few months to go before the federal election, now would be a good time for … another autism report! So two researchers at a university in Ontario have conducted a study which concluded that families of children with autism are…”under severe pressure”. A press release is here:
The report is here:
I have not had time to go through it in any detail, but I will note this: I found four references to “OHIP” (that’s the Ontario Health Insurance Plan or Medicare) in the 44 pages of the report. The last reference is in the first of the recommendations which I copy below:
“Informed by these survey results, our key recommendations for the new OAP include: 1. Provide evidence-based services, such as ABA and IBI, OT, Psychology and SLP based on clinical need and parent preference, but not limited by arbitrary age caps or funding or a similar model in which the providers
directly bill the government for services, reducing the time, paperwork and stress for parents.”OAP is Ontario Autism Program and SLP is speech and language pathology. While many people like the idea of “parent preference”, not all parents who suddenly obtain a diagnosis for their children are suddenly clinical experts in autism treatment and able to make the best choices that are in the best interests of their child when it comes to treatment. I kind of like the idea of having some professionals in the mix of decision-making and assume that the reference to ‘clinical need” is one where a professional may be involved in the determination.
It appears that one of the researchers has been appointed to the recently-appointed Ontario government “advisory committee” that is supposed to review the input of the government’s recent consultations and presumably advise the government what to do next. Given that the government also appointed two “self-advocates” to the committee, at least one of whom has made several controversial statements on social media clearly illustrating his hostility to all things ABA, it will be interesting to see if the committee’s eventual report (if it is made public) will contain any recommendation similar to the above.
ParticipantHi Folks,
Well, well. Today the federal government’s advisory council on pharmacare issued a report. The report is available here:
What does the report recommend?
“That’s why we are recommending the federal government work with provincial and territorial governments and stakeholders to establish universal, single-payer, public pharmacare in Canada.
We propose that the government enact national pharmacare through new legislation embodying the five fundamental principles in the Canada Health Act:
- Universal: all residents of Canada should have equal access to a national pharmacare system;
- Comprehensive: pharmacare should provide a broad range of safe, effective, evidence-based treatments;
- Accessible: access to prescription drugs should be based on medical need, not ability to pay;
- Portable: pharmacare benefits should be portable across provinces and territories when people travel or move; and
- Public: a national pharmacare system should be both publicly funded and administered.”
I wonder how many MPs will oppose this on the basis that “it’s provincial”?
On a related note, the Hansard of yesterday (June 11, 2019) had an interesting reference to another health “strategy”:
“Lung Cancer Screening Strategy
<b>Mr. Bill Casey (Cumberland—Colchester, Lib.): </b>
Mr. Speaker, this morning the Canadian Cancer Survivor Network held a working breakfast to share concerns and ideas for cancer victims with MPs and senators. As a double cancer survivor myself, I truly appreciate their efforts. Led by President Jackie Manthorne, the network ensures that patients and survivors obtain current knowledge about cancer treatment, options and outcomes. Dr. Paul Wheatley-Price, medical oncologist at the University of Ottawa, told us about exciting new treatments that are already having a significant impact on the chances for a successful recovery from lung cancer. Dr. Wheatley-Price emphasized that there is standardized early testing for breast cancer, colon cancer and skin cancer, but there is none for lung cancer. Dr. Wheatley-Price has asked parliamentarians to encourage the government to invest in a lung cancer screening strategy, and I think it is safe to say that parliamentarians will do just that.”“Safe to say that parliamentarians will do just that”? I sometimes get the impression that the federal government can do anything, especially in the realm of healthcare, but just not for autism. Why is it that after years of asking for a National Autism Strategy one hears only silence. With the federal election only months away and so many demonstrations in Ontario that have recently got so much attention, one might reasonably assume that the federal parties would be tripping over each other to be the first to announce a strategy, or one that was bigger and better than the other guy’s. But no. Autism got $20 in the 2018 budget for the creation of a website and some anti-stigma campaigns. Almost year and a half later, I still can’t find the website.ParticipantHi Folks,
Well, even though the NDP credits itself with being the party that introduced Medicare in Canada, one has to sometimes wonder to what extent is the party still committed to it. I say that because the Ontario NDP just issued a report about autism, and the issues that were raised by parents at a number of “roundtable” consultation sessions. As context, keep in mind that the Ontario Conservatives are the government party and they have so badly mismanaged the autism file over the past few months that they conducted public consultations and just appointed an advisory panel to advise them with respect to next steps. Well, the NDP is the opposition and saw a political opportunity. So the NDP conducted some consultations and now issued a report. It is available here:
It is a short report of only eight pages. It lists a number of themes and then concludes with the recommendation that the government should appoint a “non-partisan Select Committee” to review recommendations, etc. Real action there. However, what really struck me was that at the very end of the discussion of themes and right before the conclusion, there was one sentence that stood out like a sore thumb:
“Many families als0 wondered why autism services are not provided for under OHIP, and called for therapy to be covered.”
OHIP stands for the Ontario Health Insurance Plan (Medicare). Is it not amazing that the NDP would leave such a sentence to the very end, practically like a footnote, and leave it dangling there without any commentary or statement of endorsement as a matter of principle? However, if the issues reflected in the report do in fact accurately reflect what the autism community told the NDP note-takers, then it would appear that Medicare coverage is not a priority for the community. What a shame that the NDP does not raise this issue and make it a priority as their party’s legacy would presumably dictate. Ah…the times they are a changin’.
ParticipantHi Folks,
Every one in our autism community knows that parents of children with autism have to endure some challenges and stresses on a regular basis (including daily) which can sometimes be simply too much. People react to stress in different ways and some people, when they’ve lost hope and have gone past the tipping point, sometimes resort to desperate and regrettable behaviour. The saddest and most shocking of course is when parents simply decide that life is no longer possible or worth living. Since my son was diagnosed, I have noted several media stories of desperate parents who killed their child and others where they killed their child and committed suicide. However, the media now has another upsetting story about a parent who repeatedly harassed an Ontario politician and raised the specter of the politician’s death.
ParticipantHi Folks,
Well, this is interesting. Now let’s look at the latest news from Nova Scotia.
https://www.cbc.ca/news/canada/nova-scotia/early-intervention-autism-program-wait-list-1.5162108
It seems there are “wait lists” for kids to get a diagnosis. And then there is a “wait list” to get access to treatment. According to the Executive Director of the Autism Society of Nova Scotia, the wait list for treatment is the longest she’s ever seen it. She described the system of wait list upon wait lists as constituting a “bottleneck system”.
Yes, indeed. And if the delay in accessing treatment was not disturbing enough, the article points out that the Nova Scotia system has an age six cut-off and therefore some kids are getting “dangerously close” to missing the treatment window.
The same person also happens apparently to be a Chair of the Board of Directors of CASDA and was the leading CASDA press conference spokesperson when CASDA issued a National Autism Strategy “blueprint” last month. And what did the CASDA blueprint say about “bottleneck systems” and how to fix them? Not much, but in terms of accessing “supports”, the blueprint proposed reforming the Disability Tax Credit, ensuring consistent recognition of ASD costs for the Medical Expense Tax Credit, and enhancing the Child Care Expense Deduction (and more training). It is not clear how tinkering with the tax system would solve the “bottleneck” crisis that has manifested itself in Nova Scotia. Maybe that’s why the article does not mention the CASDA blueprint.
However, the article does say that today (Wednesday, June 5, 2019) the Nova Scotia government is set to announce something…”new resources being offered through Autism Nova Scotia”. Hmm…
ParticipantHi Folks,
Well, here’s an interesting model. Yesterday an MP made a statement in the House that is worthy of note.
Hansard, Thursday, May 30, 2019.
“Multiple Sclerosis
Mr. David Yurdiga (Fort McMurray—Cold Lake, CPC)<b>: </b>
Mr. Speaker, today I recognize World MS Day. World MS Day is a day of global advocacy in the fight against multiple sclerosis. It brings together the global MS community to share stories, raise awareness and campaign for everyone affected by multiple sclerosis. Multiple sclerosis is a disease that affects the lives of hundreds of thousands of Canadians. As many members know, my wife Kathy suffers from MS, and since her diagnosis, my family has been active in the fight against MS and other episodic disabilities. That is why I put forward my private member’s motion, M-192, to make life easier for people living with episodic disabilities. Today, I would like to thank the MS Society of Canada and especially Julie Kelndorfer for all of their hard work on my motion and in the fight against episodic disabilities. One day we will find a cure, but in the meantime, we need to band together and support all Canadians suffering from MS.”
So the MP has a family member with the disorder and he draws attention to his private member’s motion M-192. Wow. A public policy initiative and discussion? And what does M-192 say?
“M-192
Instruction to the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (episodic disabilities)That the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities be instructed to provide recommendations for legislative and policy changes necessary to ensure that the needs of persons with episodic disabilities caused, among other things, by multiple sclerosis, be adequately protected to ensure equity in government policy to support Canadians across all types of disability; that the Committee report to the House by May 16, 2019; and that it be instructed to request a comprehensive government response to its report, pursuant to Standing Order 109.”Holy smokes! This is from a Conservative Party MP from northern Alberta?! Would Mike Lake and all his supporters please take note. The MP did not “raise awareness” by talking about his love for his wife and how great she is. No. Instead, as a politician who was elected to do things, he tabled a Motion to refer a question to a Standing Committee with the task of making “legislative and policy changes” to help people with MS. A report has to be tabled with a request for a comprehensive response. Good Lord! Action!So what happened to the Motion? Well, apparently it was placed on notice on May 30, 2018, debated in the House on October 5 and November 2, 2018, and “agreed to” on November 2, 2018.And then what? Well, the HUMA committee held hearings and heard from witnesses, including the MP. On March 22, 2019 it issued a report with 11 recommendations and formally requested a Government reply. I gather the Government has not yet replied.The press release of March 22, 2019 is interesting.Note this passage from the press release:“The goal of MP Yurdiga’s private Members’ motion was to study how the needs of people with episodic disabilities are addressed in government policies that support people with disabilities more broadly and to recommend legislative and policy changes that will ensure that they have equitable access to relevant programs. The Committee’s report is based upon testimony provided by a variety of witnesses – including people living with episodic disabilities. The report presents new data on episodic disability and speaks clearly to the need to expand our understanding of disability to include episodic experiences. It also underscores the desire of people with episodic disabilities to remain active and productive in the labour force while recognizing that they need more support, including income support during periods when their disability prevents them from working. The report presents conclusions and the Committee’s recommendations to Employment and Social Development Canada, including recommendations to work together with other federal departments and agencies as well as other levels of government to address the challenges facing people with episodic disabilities.”I wonder what it would be like if our community had a champion for our cause in the House of Commons who would take the initiative to put access to autism treatment on the agenda of the Standing Committee on Health. Would a report from that committee recommending that the feds “…work together with other federal departments and agencies as well as other levels of government to address the challenges facing people with… [autism]” make any difference? Of course the Senate report of 2007 had no impact on the issue of access to treatment under Medicare, but my understanding is that the Standing Committees of the House of Commons have more influence on the Government. For example, the Standing Committee on Health issued a report on the development of a National Pharmacare Program, and the most recent budget introduced some preliminary elements of it. I have written to many chairs of the the committee in the past requesting that autism be placed on their agenda, but was told they had other priorities. Unfortunately, our community does not appear to have anyone in the House agitating for this. Shame.ParticipantHi Folks,
Well, the Ontario autism cyberspace community is lighting up with awareness about the government’s new autism advisory panel. From what I’ve been able to figure out so far, it seems that the new panel will have access to information that the government collected so far during this month’s “consultations” (the public was invited to make submissions and participate in “town hall” telephone meetings, etc.). However, it appears that it has now been revealed that the members were required to sign some sort of “confidentiality” or “non-disclosure” agreement. Thus, it appears that the panel members are obligated to not share any information obtained during the meetings. Transparency? Hmmm.
One parent tweeted surprise that the Executive Director (ED) of the Autism Society of Ontario (ASO) is a co-chair of the panel because, according to this parent, the ED has not reached out to the community since the initial government announcement in early February and has not been forthcoming about the organization’s relationship with the Minister. Wow. Finally, somebody called a spade a spade. I have always felt that the ED in question was a very poor representative of our community and that the claim that the ASO is the “voice of the autism community” was a huge misrepresentation since I never detected any sense of crisis or urgency from the ASO’s statements or support for the “Medicare for Autism Now” objective. In fact, although I joined the ASO following my son’s diagnosis, I did not renew my membership which expired after the first year. It did not take me long to see that they were not a source of inspiration.
Not surprisingly, Mike Lake immediately rose to the occasion and came to the defence of his friend tweeting “<s>@</s><b>MSAutismOntario</b> never stops working on behalf of Ontarians with autism. She is absolutely professional, non-partisan and well-respected by almost everyone I know”. Birds of a feather…it seems to me that everything he wrote is subjective and questionable, but one has to admire the thin streak of honesty reflected by the insertion of the word “almost”! One has to admit…never a dull moment in autism politics.
ParticipantHi Folks,
Further to my previous post about the Ontario government’s appointment of a new autism “advisory panel”, the twitter world has been full of comments and interesting revelations about some of the members of the panel.
Just to put some things in context, how absurd would it have been if NASA’s team of scientists working on the Apollo moon project had a member who was the president of the “flat earth society”? Or how about a situation where the government put together a group of experts to advise on public health policies regarding infectious diseases and the group included the head of an anti-vaccination advocacy organization? Or how about an advisory group on national defence that included the president of the “Let’s Surrender Society”? You get the picture.
So this new advisory panel has two folks on it that seem to be quite the anti-ABA activists. One of them has quite a trail of interesting statements he’s put out in cyberspace, including: “I hope your children all die under Ford” and “BCBAs [board certified behavioural analyst] can eat shit and die”. Sounds like he wishes death on our kids and those who can help them.
Meanwhile, one of the co-chairs has a familiar name….yes, she was the Minister at the time that my son was diagnosed way back when. Well, some parent dug up a quote of hers: “The Premier should never have promised in writing during the 2003 election campaign to extend expensive intensive behaviour treatment to all autistic kids”. One parent suggests it is clear why she and others were appointed.
Governments often resort to consultations and the use of these advisory panels as a means to generate legitimacy and public “buy in” to their subsequent decisions regarding programs and services. However, if the government has set up an ABA treatment program for autism exactly 20 years ago and now has a track record to demonstrate its positive impact on the lives of those who have been in the program, why would they appoint anti-ABA activists to such an advisory panel if not to ensure discord and a guarantee that no recommendation from the panel will have unanimous support? Of course democracy must recognize and respect diverse opinions on everything, but if the government is looking for sound advice on how to reform its program for the better and improve access to treatment for the kids who need it, then appointing anti-ABA activists to the panel is a prescription for sabotage and undermining the whole exercise. A significant amount of time and energy spent by members will likely be used up dealing with what will likely be vigorous objections from the anti-ABA folks. So…is the government serious or not? The next little while will be interesting (and entertaining if it was not so tragic).
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