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Andrew Kavchak
ParticipantThe link to the autism petition to the federal government is here:
https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-2138
ParticipantHi Folks,
Two things.
First, congrats to Beverley Sharpe on the spreading of her great op-ed piece that originally appears in the Ottawa Citizen. It has since been published by the Montreal Gazette!
Second, there appears to be a new electronic petition on the House of Commons website that was recently started by someone in Ottawa. It is a little all over the map and asking for a lot of things, but one of them certainly stands out:
“Enshrine evidence-based therapies such as applied behaviour analysis, occupational therapy, speech therapy into the Canada Health Act”.
It appears that the petition is open for signatures for one month until May 5. So far there are over 1,300 signatures. The “whereas” clauses in the petition indicate that 500,000 Canadians are affected by ASD. So how many of them, and their families and friends and professionals working in the ASD industry will sign the petition by the deadline?
ParticipantFrom: https://ottawacitizen.com/opinion/columnists/sharpe-a-national-strategy-for-autism-would-help-families-and-save-taxpayers-money-so-where-is-it
<h1 class=”entry-title”>Sharpe: A national strategy for autism would help families and save taxpayers money. So where is it?</h1>Updated: April 5, 2019I am the proud parent of a 23-year-old daughter with autism. When she was diagnosed at two years, nine months, I struggled to find treatment after a social worker came to my home and said that my daughter would end up “in a special home with others like her” because her disability was so severe.
I discovered that a treatment for autism existed that could help my daughter develop and grow, but it was neither provided by our public health care system nor covered by medicare. The treatment is Applied Behaviour Analysis. We had to resort to the private sector. My husband left, saying he did not want to spend his retirement savings on a treatment. So I emptied my bank accounts, sold everything of value at a pawn shop, slept on my living room floor and rented out rooms in my house, and worked excessive overtime to pay for my daughter’s treatment.
I was a litigant in the Supreme Court of Canada’s landmark Auton decision of 2004. This decision stated that Applied Behaviour Analysis (ABA) treatment is considered the gold standard of autism treatment. However, the court did not rule that the withholding of treatment was discriminatory and a violation of the Charter. The court stated that any decision involving expenditures was entirely up to the provincial legislatures.
Mahatma Gandhi is credited with stating that “The true measure of any society can be found in how it treats its most vulnerable members.” In Canada, if you are autistic, your core health care need is not covered by our public health insurance system. Canada is overdue to end this discrimination against some of the most vulnerable of society.
The solution is clear. Canada needs to renegotiate health accords with the provinces, and have the federal and provincial ministers of health negotiate a meaningful National Autism Strategy. It is not a far-fetched idea. Since the Trudeau government was elected, it passed a bill mandating the federal minister of health to develop, in cooperation with provincial counterparts, a National Dementia Strategy. The most recent federal budget even allocated millions to this strategy. Many provinces offer autism treatment programs out of the ministry of Social Services, the same ministry that administers welfare. Central responsibility for the autism file needs to be moved to the ministries of health.
My daughter learned to speak, dress herself, eat properly at the table, and develop and maintain daily living skills such as showering, brushing her teeth, dressing herself, doing laundry, shopping at the grocery store and simple meal preparation. She has a life with dignity in which she does not need someone to help her toilet, feed or dress herself.
Today, I am proud to say that my daughter has achieved paid part-time work. She also has daily volunteer work. She enjoys going to movies, walking her dogs and having tea with the neighbours.
Autism treatment has given my child a life. She is not an expensive, institutionalized adult.
Two years ago, the Liberal Party of Canada adopted a resolution to move ABA Autism Treatment into medicare. The result: Nothing has been done.
Cost analysis submitted to the British Columbia courts and the Supreme Court of Canada were clear that for every dollar spent on autism treatment, $1 million can be saved over the lifetime of the child.
Canada is overdue to move Applied Behaviour Analysis treatment into health ministries and include this life-changing treatment in universal medicare.
Vancouver-based Beverley Sharpe is the parent of an autistic adult daughter.
ParticipantCongratulations to Beverley for a FANTASTIC op-ed in the Ottawa Citizen!
Sharpe: A national autism strategy would help families and save money
Bravo!!!
ParticipantHi Folks,
Yesterday, (Wednesday, April 3, 2019) was another day that autism came up on the Hill. The annual “Autism on the Hill” lunch-time rally took place which appears to have followed the usual format. A few “self-advocates” spoke, followed by a few politicians. This year Green Party Leader Elizabeth May showed up and gave a short speech of support. However, one of things she spoke about seems to have been about how great autism is. She specifically referred to a young Swedish environmental activist that she finds inspirational and added something about the environmentalist doing her great activism not in spite of, but because of, her autism (ergo: autism is good and can benefit the environment???).
Of course Mike Lake also spoke at the rally and brought his son to stand beside him. I remember meeting Mike Lake when he first came to Ottawa after his initial election in 2006 and during our conversation I pointed out that the then-current CDC prevalence figures were “1 in 150”, to which he dismissively replied “I don’t believe that!”. Well, over the years he has brought his non-verbal son to stand beside him at many speaking engagements and I wonder whether it is because he wants to show people that people with autism are around in society, or is it because he wishes to establish some credibility with the audience by showing tangible proof of the disorder in his family, or is it because from his days working in marketing for the NHL hockey team in Edmonton he believes that any campaign can benefit from having a mascot and he’s committed to making his son “the face of autism” that the community will recognize and cheer for whenever he’s mentioned? I don’t know. But one thing is clear, Mike Lake has skillfully managed to make his annual one-minute “autism awareness day” statement in the House of Commons something of a performed adulation to his son that is anticipated to exceed the indelibility of his previous annual statements.
Yesterday he read what seemed to be another ode to his son and capped it off with what looked like a well-rehearsed gesture of blowing a kiss to his son in the stands (he confirmed in a statement on twitter that he “practiced”). As usual, he got a standing ovation and then retweeted messages he got from fans, including references to tears and making them cry. I find it amazing that with all the attention and opportunity that he gets at this occasion he would not say a single word about the needs of the community and what the government could and should do to meet them, but instead choses to publicly display his love of his child over and over (is that what we elect and pay politicians for?).
However, one should acknowledge references to public policy during his short speech at the noon-time rally. He did refer to the community’s “almost getting” a National Autism Strategy “a few years ago”. I think he must have been referring to his Canadian Autism Partnership project which involved the development of a business plan that the government rejected. However, at the time, I don’t recall reading any statement of his suggesting that the CAP project was a “National Autism Strategy”. It looks like historical “rebranding” and myth-making. Careful scrutiny of the evolving narrative is an interesting lesson is “politics”.
Another MP also made a statement about autism awareness in the House yesterday which was more traditional. I assume that he did not get the same standing ovation.
Autism and PDD Society of Laval
<b>Mr. Fayçal El-Khoury (Laval—Les Îles, Lib.): </b>
“Mr. Speaker, April is Autism Month. I want to take this opportunity to recognize the commendable efforts of the Société de l’autisme et des TED de Laval. Founded in 1995, this non-profit organization works to improve the quality of life of Laval families. Its talented team carries out innovative, inclusive projects for the organization’s clients and promotes the rights and interests of people with autism spectrum disorder and fragile X syndrome. I am honoured to announce that I have been named ambassador for the Société de l’autisme et des TED de Laval. I will be proudly participating in awareness activities all month long.”So that was an eventful few days in Ottawa. It will be interesting to see whether CASDA’s “blueprint” for a National Autism Strategy gets adopted in the election platform of any political party as we approach the October election. Any bets?ParticipantHi Folks,
The federal government just made a historic autism announcement.
There is a new “ASD strategic fund”. And the first project is over $800,000 for…
ParticipantHi Folks,
There were four autism-related statements in the Senate yesterday (copied below).
Tuesday, April 2, 2019.
<h2 id=”11″>World Autism Awareness Day</h2>
<b>”Hon. Wanda Elaine Thomas Bernard: </b>Honourable senators, I rise today to recognize World Autism Awareness Day. This morning I had the pleasure to attend the fifth annual Canadian Autism Leadership Summit. This summit is important for us policy-makers to hear details of provincial diversity, national initiatives and community-based services as we work together on advancing a national autism spectrum disorder strategy.I wish to extend my gratitude to Canadian Autism Spectrum Disorders Alliance and our colleagues, Senators Munson and Housakos, as well as all ASD leaders from across Canada, including several self-advocates, families and service providers who came together to address ASD issues.
It is so important that we use our voices, our privilege as parliamentarians and our commitment to help Canadians living with autism, their parents, families and advocates work together for change.
At this morning’s opening session entitled “Nothing About Us Without Us,” the presentations highlighted the value of truly listening to lived experiences to build authentic alliances with self-advocates as we implement a national strategy. We heard about the move from autism awareness to autism acceptance. I would also like to add the need for action; so, autism awareness to autism acceptance, followed by action. It’s time to leave tokenism behind.
We also must not forget to address intersectionality issues. I would like to call attention to the intersection of race, racism and disability that impacts children from racialized communities who live with autism. Individuals with several marginalized identities will have different life experiences. One area of concern to me is children of African descent, who are either not diagnosed early enough, are often misdiagnosed, or their families remain stuck in a phase of denial. As we move forward together, I invite you to consider the ways in which those children and adults with autism who are racialized are differently impacted and how we can work together to dismantle those systemic barriers.
A blatant example of the intersection of racism and disability is during police street checks. Last week, Halifax Regional Police reported that young Black men aged 15 to 25 are nine times more likely to be stopped; added to the complexity of living with autism, such interactions can easily escalate.
Honourable colleagues, we must remember to include the valuable lived experiences in our policy development and action the requests of ASD self-advocates — Nothing about us without us.”
“<b>Hon. Leo Housakos: </b>Honourable senators, every year for the past several years on this date, April 2, I rise in this chamber in recognition of World Autism Awareness Day. And every year the message, unfortunately, doesn’t change. That is — we need to do more for families struggling with autism. That’s key. It’s not just the individual on the spectrum who struggles as a result of lack of funding and programs, it is the entire family. And the costs aren’t merely financial.
The quality of Canadian expertise in autism care is not in question. It is with great pride that we can acknowledge a wide variety of organizations in our great nation that are working diligently to improve what is a complex situation.
However, as we identified in the Senate’s 2007 report,<i> Pay Now or Pay Later</i>, the startling reality is that we, as a government, continue to underfund the resources needed to help an ever-increasing number of Canadian families.
A good start came under former Prime Minister Stephen Harper, when the federal government allocated $11 million over four years to support training programs for autistic adults with the hope of assisting them into the workforce. But we need to do much more.
Last year Senators Munson, Bernard, Harder and I were able to meet with the Minister of Health, Ms. Petitpas Taylor, to have a fulsome discussion about what was needed from the federal government.
I’m happy to say Minister Petitpas Taylor followed through on her promises to us that day. She visited the Giant Steps Resource and Training Centre and the Transforming Autism Care Consortium in Montreal, to see first-hand the amazing work they’re doing. She secured funding in the budgets of 2018 and 2019 for autism programs. As a result, Giant Steps, Transforming Autism Care Consortium and other programs and facilities like them across Canada are able to apply for funding through the Public Health Agency of Canada ASD Strategic Fund.
I’d like to thank the minister and the government leader for making that possible.
The fund is designed to support innovative community-based projects that will provide Canadians living with autism, as well as their families and caregivers, tangible opportunities to gain knowledge, resources and skills that can help them address the challenges of living with autism.
But there is still so much more work to be done, colleagues. We must continue to work together as parliamentarians, regardless of our political stripe, to support Canadians living on the autism spectrum.
We must not waver or allow gaps to occur in what we are doing as a federal government. Whether focusing on research and early intervention, family support services or job training, the time has come to develop a government-led national strategy to deal with this ongoing crisis. I will rise in this chamber again next year on this date and every year until that becomes a reality. Thank you, colleagues.”
“<b>Hon. Jim Munson: </b>Honourable senators, I’m also privileged to stand and recognize today as World Autism Awareness Day. April 2 is a day that is very important to the autism community and is certainly important to me.
I can’t imagine that 12 years ago at our Standing Senate Committee on Social Affairs, Science and Technology we released the report <i>Pay Now or Pay Later: Autism Families in Crisis</i>. And here we are where access and services for autism are still uneven across this country. Can you imagine, honourable senators, that there are half a million autistic Canadians? Later has arrived. The latest changes to autism services by the Ontario government are just the most recent adversity facing families in this country on the autism front. Program modifications, funding cuts, changes in the education system, government and new budgets all cause anxiety and disruption to families of children with ASD. They pay the price for this.
Governments have put programs together. There has been Ready, Willing and Able by this government right now. We’ve had the Harper government do a number of things, as Senator Housakos said. We’ve had tax credits, disability tax credits and so on. But it’s certainly not enough because families are still suffering.
This is not who we are as a nation. Why are we struggling to define policies and provide services in an equitable way to all Canadians with ASD? Why can’t we guarantee for most people with ASD a future lived to their true potential: because our leaders don’t know how to listen, because our leaders are not curious enough, because our leaders don’t look at what others are doing, because our leaders don’t know what robust consultation looks like, because our leaders are working in silos, because our leaders are uncomfortable in working together in a nonpartisan way.
This is an unacceptable approach by our policy-makers. Large, sweeping changes hurt families and persons with autism. The story in Ontario is not just Ontario’s story; it’s a story across the country of trying to deal with this issue. I congratulate the Ford government for putting enhancements in and announcing today that they will have consultations, but that should have happened a long time ago before announcing anything.
Provinces and territories need clear direction. They need a blueprint and they need a collaborative and leadership approach with any federal government — this federal government. Sit down, think outside the box. I’m tired of standing up here each and every day talking about families who are moving to get best services, families breaking up and mortgaging their homes to get the extra services. There’s a blueprint out by the Canadian Autism Spectrum Disorders Alliance. We’re going to talk about it this evening in a room upstairs. I hope you can all join us to have that conversation, because the time is now. We really need to have this blueprint. Sorry if I lost my voice, but I’m passionate about this, and I’ll get it back, but I will never lose my voice for the families dealing with autism. Thank you very much.”
“<b>Hon. Peter M. Boehm: </b>Honourable senators, I rise as well today to recognize World Autism Awareness Day. As we know, autism spectrum disorder is a severe lifelong condition that dramatically impacts the lives of those diagnosed. It also creates emotional and financial stress on their families, caregivers and communities.
Every individual with autism spectrum disorder is unique and presents a variety of complex symptoms. As the name suggests, it is a spectrum disorder, which means that symptoms are present to varying degrees and therefore require individualized assessment to determine the appropriate support services.
Responding to autism needs is not a political or partisan issue.
What I wish to say, as a father of a son with autism, who has sought services when we lived abroad, who has struggled with various governments in this province of Ontario to receive services, is that it is not easy. It puts immense strain on families.
The current initiatives taken by the Government of Ontario highlight the need to consult with those directly impacted, with regional service providers and advocacy organizations to improve governmental programs that are based on individual need.
Affecting 1 out of 66 Canadian youth, ASD is currently the most common neurodevelopmental disorder with which children and youth in Canada are diagnosed. This does not take into account all those affected indirectly by ASD such as family members, community service providers, teachers and schools, to name a few.
The need for a national strategy to improve the lives of persons diagnosed with autism has clearly been established in Canada. Children dealing with ASD deserve to have the same rights and opportunities as any other child and more so as they become adults, as our son has become.
I applaud the advocacy undertaken by Senators Munson, Bernard, Housakos and others.
Senator Munson, you were great on the radio this morning. That’s probably where you first lost your voice.
Honourable senators, it is the duty of parliamentarians to advocate for the rights of all Canadians. The Senate in particular is meant to advocate for minority voices. It is more critical now than ever to affirm our support for the autism community in Canada and around the world. Thank you.”
Are these statements not fascinating? Senator Housakos reveals that last year four Senators met with the federal Minister of Health and had a “fulsome discussion about what was needed from the federal government”. We are not sure what the Senators proposed, but he then states that he is happy to report that the Minister “followed through on her promises to us that day”. And what were those promises? Funding in the budget for “innovative community-based projects” etc. I don’t see the message “Medicare for Autism Now” anywhere. Why is that?
ParticipantHi Folks,
Well, yesterday was Autism Awareness Day. Two MPs spoke about autism in the House of Commons.
Tuesday, April 2, 2019.
House of Commons. Statements by Members.
World Autism Awareness Day
<b>Mr. Yves Robillard (Marc-Aurèle-Fortin, Lib.): </b>
“Mr. Speaker, today I want to mark World Autism Awareness Day, because not many Canadians know about this cause. It is more important than ever to raise awareness of autism, because the number of children being diagnosed is rising. The autism spectrum requires us to use a different approach with each person affected by this disability, but we need to do more to promote their inclusion as a group. Many children still face prejudice and encounter numerous barriers because of autism. I want to thank the Société de l’autisme et des TED de Laval for all of its efforts to educate Canadians on the reality of autism.”“Mr. Speaker, today I would like to talk about World Autism Awareness Day. Autism spectrum disorder affects a significant number of children. In the Laurentians, it affects one in 60 children, and 90% of those affected are boys. We probably all know someone—a family member, a friend, a child or an acquaintance—whose life is affected by autism. Autism affects everyone. This issue is near and dear to me. I would like to thank the Fondation autisme Laurentides for working so hard to help children with autism and their families. Today being World Autism Awareness Day, I believe it is important to create space for an ongoing conversation about what we can do to help and support people with autism and their families. I would like to thank those of my colleagues who are proudly wearing blue as a sign that they want to talk about this and raise awareness among those around us.”Both speakers were Liberals from Quebec. One talked about doing more to promote inclusion, and the other talked about space for an ongoing conversation about what can be done to help and support people with autism. In other words, the specifics of what our community has been asking for since the Auton case was heard by the Supreme Court of Canada in 2004 is simply not acknowledged. Despite all the hoopla on Parliament Hill last Sunday and Monday with rallies and press conferences calling for a “National ASD Strategy” and the issuance of the CASDA “blueprint”, neither of these government party MPs felt compelled to even acknowledge the initiative or idea that is so dear to the hearts of so many in our community. Of course, that’s not really surprising. After CASDA held their Monday morning press conference announcing their blueprint for their proposed strategy, a reporter from the Toronto Star contacted the federal Minister of Health’s office and then added this at the end of her news story:“A spokesperson for federal Health Minister Ginette Petitpas Taylor said the Liberal government “will continue to work with community groups, caregivers and all others to ensure Canadians with autism get the support they need.”“Sounds like more of the status quo. It suggests that they don’t intend to change their (federal) policies, which actually dovetails well with the CASDA blueprint since CASDA specifically says they are not seeking to change any provincial policies. No change. Status quo. Carry on.As you all know, Mike Lake usually makes a statement on this occasion and gets a standing ovation. Apparently he did not speak in the House at all yesterday. Perhaps today he will make his statement. There will also be the annual autism awareness rally on the Hill over the lunch hour today.ParticipantHi Folks,
Well, it is certainly interesting to observe how things are playing out following yesterday’s CASDA press conference in Ottawa in which they issued a “blueprint” for a National ASD Strategy that they hope will have an impact during the coming election. One of the things I find most interesting is the content of the proposed strategy and the spin that various players are putting on it.
For those who are interested, here are some preliminary observations. As background, the CASDA multitude of documents are available here:
The key document is the 19 page blueprint here:
https://www.casda.ca/wp-content/uploads/2019/03/Blueprint-for-a-National-ASD-Strategy-1.pdf
They also have a summary deck on the webpage.
At page 4 of the main text they state that with “evidence-based supports, early intervention, etc. “Autistic Canadians can see significant improvements in their quality of life”. So access to evidence-based intervention should be key, right? Well, at page 8 they address the “affordability and access” issue. They actually state that “Applied Behaviour Analysis” can cost $80,000 a year. As far as I can tell, this is the only reference to ABA in the entire document. (If I’m wrong, please show me where else it is mentioned.) In other words, it is not presented as the clear leading evidence-based treatment that is the core healthcare need of all newly-diagnosed children with autism. It is merely inserted in the background as an example (“such as”) of how expensive “evidence-based supports” can be.
Their description of the “access” issue does not mention the fact that ABA treatment programs, where available, tend to be offered by “social services” departments with inadequate budgets and unconscionable waiting lists. Nowhere do they ask why is it not the provincial Ministries of Health that are providing the ABA treatment for autism and why is it not covered by Canada’s public health insurance (Medicare).
Instead, they describe the accessibility challenge as being one that involves high costs, difficulty if finding services for those with other “co-occurring conditions”, the difficulty of finding services in rural areas, and that this is particularly challenging for some sectors of society including the LGBTQ+ Canadians, etc. To me, this description of the “access” issue is seriously flawed and omits some major problems confronted by our community.
So what is their solution to this access issue as they describe it? (1) Reforming the Disability Tax Credit, (2) Building leading ASD support into the federal health system (i.e., Indigenous people and armed forces), (3) training the next generation of ASD professionals, (4) ensure consistent recognition of ASD costs for the Medical Expense Tax Credit, and (5) Enhance the Child Care Expense Deduction.
In other words, the issue of having the provincial Ministries of Health deliver ABA treatment paid for by Medicare is not addressed at all. To me, this should be at the core of a National ASD Strategy. Why?
(1) Because when a child is diagnosed, what is the first and most important matter to address? Implementing an ABA program pronto in order to help the child develop to his/her full potential. That’s the core priority that should be at the heart of any “National Strategy”.
(2) As a society, the more that is invested in early intervention, the less expenses are encountered in “supports” down the road.
(3) If a request for a strategy provides a lengthy list of requests that are all portrayed as being of equal importance, a government will typically pick the easy low-hanging fruit to implement (if they pick anything at all) in order to be able to check the box and say to the electorate that they’ve addressed the issue.
(4) It is discriminatory when Medicare is supposed to address the core healthcare needs of Canadians, but tells those with autism to go elsewhere. What other group of Canadians with another distinct disorder or illness get referred to the welfare department for treatment? The discrimination against autism has to stop and the appropriate healthcare professionals and Ministry of Health bureaucrats should be dealing with the program to deliver treatment.
So yesterday I received a call from the Toronto Star and gave an interview to a reporter about the CASDA press conference and an article subsequently appeared online with a quote of mine.
In the article, I am quoted as expressing disappointment with the strategy because the blueprint does not address funding for ABA autism treatment and the core of a national autism strategy should involve the feds taking the lead to bring the provinces around to ensuring that ABA autism treatment is provided as a medical service covered by Medicare.
So get this…on the CASDA Facebook page one parent asked the question “How can a national strategy not include ABA services?!? This is why families in Ontario are in an uproar!”
And how did CASDA respond? “it does – it includes evidence-based practices and specifically names ABA”
To which the parents replied: “Thank you for clarifying!”.
Well, the parent may think that all is well, but I think the CASDA response is “spin” and misleading. The one reference to ABA is merely an example of “supports” that are expensive. It is a stretch to suggest that the proposed reforming of tax expenses and credits, etc. means that the blueprint “includes” ABA and imply that access to ABA treatment will be improved if this blueprint is adopted and implemented.
And my concern about the “spin” being somewhat potentially misleading is heightened by something in their deck that is on their webpage (Blueprint Remarks Presentation). At page four the deck specifically states what the strategy blueprint is not trying to do. It clearly states that they are not trying to “seek changes to provincial or territorial policies”!
If the blueprint and proposed national strategy is not meant to result in any changes to provincial policies, then it is a lot of stirring the pot with a view to do what exactly?….Maintaining the status quo? Too bad the person who wrote the CASDA response to the parental question on their Facebook page did not specifically refer and mention to the blueprint not being intended to change any provincial policies.
Sometimes one gets the impression that candour is in short supply.
Another interesting spin on this matter involves the response of Mike Lake. From what I could tell, he was not at the rally on the Hill on Sunday or at the press conference yesterday. This is not surprising to me. The theme of both events was the promotion of a “National ASD Strategy” and I’ve never heard Mike Lake express any support for such a concept. In fact, I’ve never heard him utter the words since he was elected in 2006, although he’s had plenty of opportunities to do so. (If I’m wrong and anyone knows of any instance where he publicly expressed his support for a national autism strategy, please provide me with details.) So how would he deal with the events of yesterday? Well, on his Twitter account he posted this:
“Seeing <s>#</s><b>NationalAutismStrategy</b> trending today takes me back to one of my favourite Question Period moments, 2 years ago, when leaders of 3 federal parties called on the government to support a national strategy through the Canadian Autism Partnership. Just a matter of time now.”
Get it? He does not say he supports the blueprint for a National ASD Strategy, but instead establishes his credibility by referring to his previous partnership proposal and suggesting that it would have been the vehicle for a “national strategy”. I read all the Hansard speeches during the debates over his motion to fund his CAP project, but I don’t remember his referring to it at any point then as a “national strategy”. I may be wrong, but I honestly don’t remember his ever suggesting that. But his objective was achieved. Another parent posted this tweet that is on the “Autism on the Hill” twitter:
“Keep fighting <s>@</s><b>MikeLakeMP</b>. Every Canadian with autism, regardless of age or address, deserves the proper support from their federal government. Looking forward to your speech on <s>@</s><b>AutismOnTheHill</b>, and your continued advocacy for a <s>#</s><b>NationalAutismStrategy</b> <s>#</s><b>cdnpoli</b>”
Spin, spin, spin.
ParticipantHi Folks,
Well, I just watched the half hour video of this morning’s press conference that is posted on the CASDA facebook site. I don’t get it. I just don’t get it. I wonder whether any of the three speakers has a child on the spectrum? I know Senator Munson does not, but what about the other two speakers? I suspect that most parents had the same (or similar) questions as I did when my son was diagnosed. “What can you do about it?” Once you understand that the cause and cure of autism are still not known to the medical and scientific communities, the next piece of information involves treatment. “Is there a treatment which can help the child to develop to his or her full potential?”. What a relief it is to know that in fact the medical and scientific community has known for over three decades now that the application of Intensive Behaviour Intervention therapy based on principles of Applied Behaviour Analysis can help children with autism develop to their full potential. I’m not going to review the history and stats of the Lovaas and replication studies….you know them. However, the point is that at the time of diagnosis, taking advantage of the plasticity of the brain and getting access to the treatment is the top priority. It is crucial and it can have huge impacts on the child’s life at every stage of the lifespan. So to me, and many other parents, the feds should adopt a National Autism Strategy that has, at its core, a program of funding negotiated with the provinces that involves the provision of the treatment by the Ministries of Health and covered by Medicare. All the other things like employment and housing assistance, etc. are important and should eventually be addressed in a strategy, but if you ask for everything and the kitchen sink at the first instance and portray them all as equally important, the government will only pick the easy low-hanging fruit (if it picks anything at all).
Unfortunately, during the press conference, I did not hear anyone speak of Intensive Behaviour Intervention or Applied Behaviour Analysis. No one mentioned IBI or ABA. I did not hear the words “public health insurance” or “Medicare” either. Access to treatment under Medicare? No. Did not hear it. Management of treatment programs by provincial Ministries of Health? Nope. Did they say anything about re-negotiating existing Health Accords to ensure access to treatment pursuant to national standards? I don’t think I heard that either. Did they talk about the role and responsibilities and the leadership that the provincial and federal Ministers of Health should play in this matter? Nope. They did say that the feds should designate “a Minister” to be the lead on the development of the strategy, but they did not say which one. Minister of Agriculture maybe? Oceans and Fisheries?
They did talk about “supports”. That includes respite. I think the omission of the treatment under Medicare issue is a fundamental flaw in this CASDA “blueprint” for a National Autism Strategy.
Getting a strategy requires a strategy, and I don’t think they have a strategy that is going to assist in getting access to treatment under Medicare anytime soon. We’ll see if any party puts something in their election platform, and we’ll see after the October election if the next government will do anything. I suspect that if they do something and call it a National Autism Strategy, they won’t take initiatives to cover everything in that was addressed about lifespan needs, but will only pick a few of the easier things (like making references to the already announced National Housing Strategy, etc.)
So tomorrow is Autism Awareness Day and Wednesday is annual rally on the Hill day. More to come.
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