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  • in reply to: Room Three: Discussions about Government Topics #22503
    Andrew Kavchak
    Participant

    Hi Folks,

    Well, we’re finally getting some traction in Quebec.  Today, Le Devoir of Montreal published the article about the need for federal leadership on the autism files.  In the past I met with two separate members of the Bloc Quebecois and was profoundly disappointed.  Both members were curious about my protesting on the Hill, but both made it clear to me that these matters were strictly of provincial jurisdiction.  However, one of them was particularly supportive of the idea of the federal government transferring more funds to the province of Quebec, however, he did not think there should be any strings attached.

    Not long ago the media carried stories about a Quebec family moving to Halifax because the wait times for access to therapy in Quebec were too long.  My understanding is that the Quebec government is currently reviewing their autism programs and policies and is expected to issue a new revamped approach in the spring.  Perhaps this this an opportune time to stimulate some debate.

    Cheers,

    Andrew Kavchak (Ottawa)

    http://www.ledevoir.com/societe/sante/489729/autisme-plus-de-bureaucratie-n-est-pas-la-solution

    <header>LIBRE OPINION
    <h1>Autisme: plus de bureaucratie n’est pas la solution</h1>
    </header>

    21 janvier 2017  Andrew Kavchak
    En tant que père d’un enfant ayant reçu un diagnostic d’autisme il y a plus de dix ans, j’ai suivi les débats sur les politiques fédérales et provinciales en matière d’autisme avec un intérêt majeur, mais une désillusion plus grande encore.

    Je croyais que l’un des aspects qui faisaient du Canada un grand pays était son système de santé publique, mais le diagnostic que mon fils a reçu m’a ouvert les yeux sur la discrimination dans le système d’assurance maladie. Il n’y a pas de remède contre l’autisme, mais nous disposons depuis des décennies d’un solide ensemble de données scientifiques vérifiées par des pairs qui prouvent que la thérapie par intervention comportementale intensive (ICI) fondée sur les principes de l’analyse comportementale appliquée (ACA) peut avoir une incidence considérable sur le développement des enfants atteints d’autisme.

    Malheureusement, le traitement n’est pas couvert par l’assurance maladie partout au pays. Dans la plupart des provinces, l’ICI/ACA n’est pas offert par le ministère de la Santé aux personnes qui en ont besoin, au moment où elles en ont besoin et pendant toute la période où elles en ont besoin. Lorsqu’ils sont disponibles, les programmes sont généralement offerts par le ministère responsable des services sociaux plutôt que par celui de la Santé, et leur portée est extrêmement limitée. De plus, ils sont minés par des listes d’attente excessivement longues qui s’étalent souvent sur des années.

    Ma famille a dépensé plus de 40 000 $ pour obtenir cette thérapie dans le secteur privé au cours de la première année après le diagnostic, en attendant un traitement offert par le gouvernement. Cette situation était intenable pour nous, comme elle l’est pour la majorité des familles canadiennes.

    Plus récemment, quand j’ai cherché un placement en foyer de groupe pour notre fils en Ontario, je me suis fait dire qu’il nous fallait attendre qu’il ait dix-huit ans pour obtenir que son nom soit inscrit sur une liste d’attente et que la période d’attente moyenne est d’une dizaine d’années. Des attentes aussi considérables pour obtenir des soins en établissement pour les adultes atteints d’autisme sont la norme partout au pays.

    Bureaucratie

    On peut se demander à quel point le gouvernement fédéral a fait preuve de leadership national dans ce dossier. Il n’a pas fait grand-chose jusqu’ici. Récemment, il a été invité à adhérer à une nouvelle proposition. En novembre, un groupe d’experts sur l’autisme créé par le précédent gouvernement fédéral a remis son rapport à la ministre fédérale de la Santé, Jane Philpott. Un plan d’affaires proposant un projet de partenariat canadien pour l’autisme (PCA), accompagné d’une demande de soutien totalisant 19 millions de dollars sur cinq ans, a été présenté. La ministre Philpott doit maintenant décider s’il y a lieu ou non d’aller de l’avant avec ce « modèle de partenariat pour l’autisme ».

    Malheureusement, le PCA est loin d’offrir aux familles canadiennes aux prises avec l’autisme quelque soulagement. Le PCA offre une vue d’ensemble de la structure proposée (conseil d’administration, directeur national, 11 employés, conseil consultatif), et décrit une mission (résoudre les enjeux relatifs à l’autisme à l’aide d’une approche axée sur le partage du leadership) et un processus (consultations, détermination des enjeux, établissement d’un programme, résolution des problèmes, mobilisation, évaluation, mesure, surveillance) — mais ça s’arrête là. En d’autres termes, le PCA prévoit la création d’une autre bureaucratie.

    Ceux et celles qui participent au groupe de travail et leurs sympathisants peuvent se réjouir à la perspective d’une nouvelle bureaucratie, mais au sein de la communauté de l’autisme, nous sommes nombreux à réagir avec consternation.

    La dernière chose dont les familles aux prises avec l’autisme ont besoin, c’est bien de plus de bureaucratie. Ce dont nous avons besoin plutôt de la part du gouvernement fédéral, c’est un réel leadership dans le dossier de l’autisme, et ce, dès maintenant.

    Inquiétudes

    Le PCA soulève de nombreuses inquiétudes et présente des risques. Premièrement, le plan ne mentionne aucune lacune précise dans les politiques actuelles et ne cerne pas les enjeux à régler en priorité, pas plus qu’il ne donne d’exemples concrets des méthodes à utiliser pour résoudre ces enjeux dans le cadre du nouveau modèle ou qu’il ne fournit d’échéancier.

    Deuxièmement, nous avons déjà une agence de la santé publique et un ministère fédéral de la Santé. Ces institutions et les institutions de même nature au palier provincial ne sont-elles pas assez efficaces pour mener ces consultations et veiller à la collaboration, à la détermination des enjeux et à la prise de décisions politiques ? La création d’une nouvelle bureaucratie aura vraisemblablement pour effet de rendre encore plus aléatoire la possibilité de mesures concrètes pour combler les lacunes dans les programmes et les politiques partout au Canada.

    Troisièmement, le modèle du PCA ne confère pas vraiment au partenariat quelque pouvoir d’apporter des modifications à la politique publique, et il est certain qu’il ne disposera ni des ressources ni du pouvoir législatif requis pour prendre des décisions utiles qui aient des effets concrets sur le terrain.

    Plutôt que d’envisager une nouvelle bureaucratie, la ministre Philpott devrait déterminer comment le gouvernement fédéral peut faire preuve de leadership, exercer une influence et mettre de l’argent sur la table pour négocier un accord avec les provinces afin de régler trois enjeux récurrents pour les familles aux prises avec l’autisme : le manque de services de santé couverts (assurance maladie) pour le traitement de l’autisme (ICI/ACA) ; le manque de services d’ICI/ACA dans le système d’éducation ; et le manque de logements adaptés pour les adultes atteints d’autisme.

    S’il y a volonté politique, il y a moyen d’agir.

     

    in reply to: Room Three: Discussions about Government Topics #22473
    Andrew Kavchak
    Participant

    Hi Folks,

    On a somewhat separate matter, we all often come across newspapers headlines that mention “autism” and inevitably attract our attention.  Every once in a while there is something that comes up that is completely unexpected.

    I remember about 11 or 12 years ago there was an article that circulated in the media about a Japanese politician or army general (I can’t remember which), who complained that the Japanese armed forces had a mind of their own. He implied that they did not follow orders, and described the Japanese armed forces as being “autistic”.  I was tempted at the time to send him a telegram suggesting the immediate adoption of ABA in the Japanese command structure to resolve his apparent lack of military discipline conundrum.

    On December 22, 2016, there was another headline in the news that makes reference to the army….

    From: http://alyaexpress-news.com/98-israeliens-faveur-de-lintegration-autistes-larmee/

    “98% des Israéliens en faveur de l’intégration des autistes dans l’armée”

    Cheers,

    Andrew (Ottawa)

    in reply to: Room Three: Discussions about Government Topics #22472
    Andrew Kavchak
    Participant

    Hi Folks,

    Well, it seems that enough people wrote to the Toronto Star about the autism article, and they bunched up a few and published them at:

    https://www.thestar.com/opinion/letters_to_the_editors/2017/01/15/action-needed-on-autism.html

    I have copied the letters below.  Thank you to all those who wrote in support of the original article’s overall observations. I wish to especially thank Beverley Sharpe, who is a frequent contributor to this discussion board!

    Regarding the second letter-writer’s objections to the use of abbreviations (and acronyms), I should explain that newspapers impose word count limits on submissions.  As a result, writers seek all possible ways to say the most, with the least amount of words.  One technique is to spell things out fully the first time they are mentioned, and indicate the abbreviation (e.g., Intensive Behaviour Intervention “IBI”). This is a common practice, and it assumes the reader will either remembers the abbreviation, or will not be offended by the requirement to return to the first mention to “refresh” one’s memory.

    Cheers,

    Andrew Kavchak (Ottawa)
    <h1 class=”article__headline”>Action needed on autism</h1>
    Sun., Jan. 15, 2017

    Re: Autism families don’t need more bureaucracy, Opinion Jan. 6

    Autism families don’t need more bureaucracy, Opinion Jan. 6

    I was stunned to read Andrew Kavchak’s piece about the proposed Canadian Autism Partnership (CAP) and the fact that the government is now deciding on whether to create a new autism bureaucracy. As a parent of a child with autism, I agree with him that getting access to IBI/ABA treatment for kids with autism without unconscionable waiting lists and absurd age “cut-offs” is the number one priority.

    The governments have to work together and agree on a funding arrangement to make this happen. Please do not create a new “issue identification” bureaucracy and believe that the problem is resolved. We don’t need more bureaucracy, but a concerted effort to get autism treatment covered by medicare from coast to coast.

    Beverley Sharpe, Families for Early Autism Treatment of B.C.

    Why is it that opinion writers who presumably are experts in their field, assume that all the readers of the Star are also experts? I started to read Andrew Kavchak’s article on autism but by the fourth paragraph was fed up with having to go back to the first paragraph to remind myself what the abbreviations he used stood for.

    Mr. Kavchak is obviously very familiar with the abbreviations but most readers of the Star are not. I gave up on his article and went to another on the same page by Jon Dogterom about cleaning up the environment only to find again, more abbreviations.

    Why in a newspaper article with lots of word space, do contributors insist on writing as if they are using a 140 character Twitter account? For an article to be enjoyed and understood by someone who’s not familiar with the subject, it must be easily readable or people will as I did, lose interest and go on to something else. Is the inability to use the written word another symptom of our dumbed down and interconnected world?

    John Blake, Picton

    I agree with Andrew Kavchak that the government needs to do something practical to help the situation. Getting access to IBI/ABA treatment for kids with autism is the number one priority. An agreement on funding is needed. We don’t need more bureaucracy. We need to get autism treatment covered by medicare in Canada.

    Edward Morofsky, Ottawa

    As retired educators and parents of a 35-year old severely autistic adult son who requires 24/7 daily care, assistance and support with all of his activities of daily living that we personally continue to provide, we fully empathize with the Kavchak’s plight and their travails with the support system related to autism – unfortunately we hold out no hope that anything will change.

    For three and a half decades we have also struggled with the chronic lack of proper funding and awareness; the impenetrable, ponderous, and often imperious medical, educational and governmental bureaucracy, the endless well-meaning but often useless suggestions for therapeutic interventions and educational supports, the interminable decades-long wait lists that translate into no service at all, the desperately poor quality of residential options, the impoverishing life-long government financial support for the disabled and the ongoing high stress levels of parents who live daily with the often severe multimodal deficits of autism – constant high-pitched squealing, daily incontinence and a lack of interest in personal hygiene, loud vocalizing and an inability to use language to express needs, obsessive/compulsive oppositional behaviours like constantly opening windows and drawers and the regular, severe behavioural tantrums and tics that are all part of the being autistic. We have experienced the social isolation of parents who struggle silently with this life-long syndrome and its significant demands with limited moral support and the despair they feel about the future prospects for their vulnerable and at-risk children after they are gone. Been there, done that, got the T-shirt.

    The problem that Mr. Kavchak accurately lays out is typical – too much talk – too little action. While support responses continue to focus on pre-school age panaceas there is no intensive and comprehensive cradle-to-grave long-term plan with funding for those with autism, many of whom are now well into adulthood and despite a worryingly high occurrence rate of 1 in 68 in Canada and a normal life expectancy for those diagnosed with ASD. This is a chronic, life-long disability that will not get better over time and whose needs are complex, diverse and intense and cannot be provided for adequately with generic care and support such as that provided by well-meaning but poorly funded community agencies. The education system is only equipped to provide general special education support. It is not nearly enough. Once children reach the age of 21 they drop off a cliff in terms of coordinated interventions and into a loosely organized community support network supervised by the Ministry of Community and Social Services. After that – its hurry up and wait.

    The families of those with autism have waited long enough already – they have a right to expect better.

    Robert Bahlieda, Newmarket

     

    in reply to: Room Three: Discussions about Government Topics #22469
    Andrew Kavchak
    Participant

    Hi Folks,

    A couple of interesting developments here regarding this CAP project proposal and the concern about the lack of federal leadership.

    First, the article that was first published in the Toronto Star last week has appeared in a few more media outlets…

    Halifax:

    https://www.localxpress.ca/opinions/opinion-ottawa-fiddles-while-families-facing-autism-get-burned-506063

    Rural Alberta (I think)

    It’s Time for Feds to Show Real Leadership on Autism

    Sask News

    http://newssaskatchewan.ca/2017/01/11/its-time-for-the-federal-government-to-show-real-leadership-on-autism/

    Second, one of the persons involved in the creation of the CAP project proposal to the government had a rebuttal published in the Halifax paper

    https://www.localxpress.ca/opinions/rebuttal-autism-community-needs-united-front-in-advocating-for-reforms-508159

    I think that a debate about this proposal is healthy and what a democracy is all about.  The CAP website and executive report suggest that “the people have spoken” and they all support CAP. Well, not quite.  So let’s discuss this project to see whether it is what its proponents say it is, and whether it can be improved. I don’t think they’ve made the case for it very well, and perhaps this discussion can help develop a better understanding of what the proposed CAP can potentially do. Ironically, by offering a critique, the CAP folks have the spotlight and can take advantage of it.  The rebuttal raises a few points which merit discussion and should be addressed.  I think it is worth mentioning of course that “op-ed” pieces in newspapers, and the “rebuttals” are limited in space and my original draft was edited (shortened).  There is much more that could be said, but I would encourage and support others to come out and speak up and share their views, rather that this matter just being limited to the usual “talking heads”.  Thus, I myself don’t plan to issue a rebuttal to the rebuttal, but there is one thing I would like to highlight in the rebuttal because I believe that it proves (one) of my points.

    In my original critique I pointed out that the priority issues are known. By starting over from scratch and consulting with the community about “issues”, the number of issues raised will inevitably dilute the focus from what should be the priority issues.  To me, access to IBI/ABA under Medicare and access to appropriate accommodation are the critical priority issues. With a flood of other issues that can be expected to be submitted to the new bureaucracy, there will be confusion about what is more (or less) important.  The problem is that there is a serious risk that all the issues will be treated as issues of equal importance and the primary issues will not be adequately addressed. Governments will naturally tend toward picking the low-hanging fruit and tick off the item on the list and claim progress and success.  In the “rebuttal” that was published, the author  states  that “the issues are not exclusive to autism treatment” and they include “….community safety…” and “…access to…dental care…” etc.  See what I mean?  I rest my case.

     

    in reply to: Room Three: Discussions about Government Topics #22467
    Andrew Kavchak
    Participant

    And now in the Huffington Post…..

    more on autism and this CAP project and the need for some federal leadership…

    http://www.huffingtonpost.ca/andrew-kavchak/federal-leadership-autism_b_14105808.html

    I just wanted to share with you all something that is really interesting (to me).  I got an email from a person who is the head of one of the “Autism Societies” who accused me of “causing problems”.  Apparently, according to this person, the CAP project,

    1. does recognize the issues I raised (i.e., lack of access to treatment and housing accommodation),
    2. won’t create a “big” bureaucracy,
    3. will be composed of “focused experts”,
    4. who will “hammer” away the provincial and federal governments and won’t let them ignore these priority two issues any longer.

    Well, I kind of wish all that were true, but the fact is that none of that is reflected in the Executive Summary on the CAPP website.  Not one single issue is specifically referred to. Not one.  There is no mention of “hammering away” at governments in the report, and it is difficult to imagine any government signing on and agreeing to support something (and pay for it) that involves “hammering away” at itself. Governments tend to attempt to avoid “self-injurious” behaviour of that nature, although they do shoot themselves involuntarily in the foot and then stick it in their mouths on a not infrequent basis.

    Regarding the bureaucracy issue, one thing that is of interest is this creation of a separate organization. I wonder why the Department of Health or Public Health Agency of Canada cannot be mandated with the creation of an ASD division… Does the government create such separate “partnership bureaucracies” for other disorders/illnesses/syndromes, etc?  It seems to me that it risks marginalizing, rather than mainstreaming, the ASD issues.  But that’s just my take on this. Who knows?  Maybe this proposed partnership bureaucracy could morph into a full-fledged department headed by…imagine…the “Minister of ASDs”.

     

    in reply to: Room Three: Discussions about Government Topics #22465
    Andrew Kavchak
    Participant

    Hi Folks,

    Well, a few other publications have also published the article about this CAP project and the need for some federal leadership on the autism file, such as:

    The Waterloo Record

    http://www.therecord.com/opinion-story/7058741-it-s-time-for-ottawa-to-show-real-leadership-on-autism/

    The Charlottetown Guardian

    http://www.theguardian.pe.ca/opinion/2017/1/11/-autism–time-for-feds-to-show-real-leadership-.html

    I hope that the Minister of Health’s advisors will take note, and that a genuine discussion recognizing the paramount issues and how to address them will take shape in the Minister’s office as she ponders how to deal with the “business plan” that was submitted to her in November.  If you wish to add your voice to the discussion, please feel free to send a message to the federal Minister of Health, the Hon. Jane Philpott, at:

    jane.philpott@canada.ca

    Cheers,

    Andrew (Ottawa)

    in reply to: Room Three: Discussions about Government Topics #22463
    Andrew Kavchak
    Participant

    Hi Folks,

    The article about the need for some federal leadership on the autism file has been picked up by another media outlet…

    It’s time for feds to show real leadership on autism

    Cheers,

    Andrew Kavchak

     

    in reply to: Room Three: Discussions about Government Topics #22457
    Andrew Kavchak
    Participant

    Hi Folks,

    I’m sorry that my previous post came out somewhat garbled. I copied and pasted, and there was no indication that anything in the appearance of the text would change once you click on “submit”. The former website had a “preview” type of function, where one might be able to correct such things, but this new website does not have that “preview” function. Sorry.

    In any event, the commentary piece in today’s Toronto Star is available at:

    https://www.thestar.com/opinion/commentary/2017/01/06/more-bureaucracy-not-the-solution-for-autism-treatment.html

    Cheers,

    Andrew

    in reply to: Room Three: Discussions about Government Topics #22456
    Andrew Kavchak
    Participant

    <p id=”yui_3_16_0_ym19_1_1483699181886_13807″>Hi Folks,</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_13807″>I had an “op-ed” commentary on autism published in the Toronto Star today.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>As some of you may know, the previous federal government did not do anything significant on the autism file and in 2015 they created a “working group” of “experts” to come up with some sort of “Canadian Autism Partnership” (CAP) plan.   The working group reported to the new federal Health Minister in November.  Minister Philpott now has to decide whether to accept it’s recommendations, which involve spending $19 million to create a new bureaucracy to engage in consultations and identify “issues”. In the commentary, I point out that the federal government could do a better job than that!</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>Cheers,</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>Andrew Kavchak</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>https://www.thestar.com/opinion/commentary/2017/01/06/more-bureaucracy-not-the-solution-for-autism-treatment.html</p>

    <h1 id=”yui_3_16_0_ym19_1_1483699181886_14033″>More bureaucracy not the solution for autism treatment</h1>

    <p id=”yui_3_16_0_ym19_1_1483699181886_14035″ dir=”ltr” data-setdir=”false”>Minister Philpott should consider how the federal government can demonstrate leadership, exercise influence, and put some money on the table to negotiate an accord with the provinces</p>

    By ANDREW KAVCHAK
    Fri., Jan. 6, 2017
    As a parent of a child diagnosed with autism over a decade ago, I have watched the provincial and federal policy debates about autism with great interest — and even greater disappointment.
    <p id=”yui_3_16_0_ym19_1_1483699181886_14159″>Although I used to believe one of the things that made Canada a great country was its publicly funded health care system, my son’s diagnosis opened my eyes to discrimination under medicare. There is no cure for autism, but we’ve had solid peer-reviewed evidence for decades that Intensive Behaviour Intervention (IBI) based on the principles of Applied Behaviour Analysis (ABA) can have a dramatic impact on the development of kids with autism.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14160″>Unfortunately, the treatment is not covered by medicare across the country.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14161″>In most provinces, IBI/ABA is not offered by ministries of health to those who need it, when they need and for as long as they need it. Programs, when they are available, are typically offered by ministries of social services instead and are extremely limited in their scope. They are also plagued by unconscionable wait lists — often years long.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14162″>My family spent over $40,000 on such therapy in the private sector in the first year while waiting for government provided treatment for our son. This was not sustainable for us nor is it for most Canadian families.</p>

    <p id=”yui_3_16_0_ym19_1_1483699181886_14164″>More recently, when I inquired about placing our son in a group home facility in Ontario, I was told he could not be placed on a list until he’s 18 — and the average waiting period is a decade-long. Such dramatic waits for care facilities for adults with autism is replicated across the country.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14165″>So what kind of national leadership has the federal government demonstrated on this file? Not much so far. Recently they’ve been invited to embrace a new proposal.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14166″>In November, an expert working group on autism created by the previous federal government presented their final report to Health Minister Jane Philpott. A proposed business plan for a Canadian Autism Partnership (CAP) and a request for support, to the tune of $19 million over five years, was put forth. Philpott now has to determine whether to proceed with this “autism partnership model.”</p>

    <p id=”yui_3_16_0_ym19_1_1483699181886_14169″>Unfortunately, CAP falls far short of offering autism families across the country any relief.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14170″>CAP gives an overview of their proposed structure (board of directors, national director, 11 employees, advisory council), a mission (address issues related to autism using a shared leadership approach), and a process (consultations, issue identification, agenda setting, problem-solving, mobilization, evaluation, measurement, monitoring) — but that’s about it. In other words, the CAP proposal involves the creation of another bureaucracy.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14171″>Those involved with the working group and their supporters may be excited about the prospects of a new bureaucracy, but many in the autism community — myself included — are shaking their heads in disbelief.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14172″>The last thing autism families need is more bureaucracy. What we need instead from the federal government is real leadership on autism — and we need it now.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14173″>The CAP proposal raises numerous concerns and risks. First, the plan does not mention specific gaps in policy or issues that need to be addressed on a priority basis, and it does not give concrete examples of how such issues could be resolved with the new model or when.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14174″>Second, we already have a public health agency and a federal department of health. Are these institutions and their provincial counterparts not adequate enough to conduct consultations, collaboration, problem-identification and political decision-making? The creation of a new bureaucracy will likely render the possibility of any concrete action to resolve policy and program gaps across the country even more remote.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14175″>Third, the CAP model does not actually provide the partnership with any authority to make changes to public policy, and it certainly won’t have the resources or legislative power to make meaningful decisions which will entail consequences on the ground.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14176″>Instead of a new bureaucratic structure, Philpott should consider instead how the federal government can demonstrate leadership, exercise influence, and put some money on the table to negotiate an accord with the provinces that would address three recurring issues as priorities for autism families: the lack of health care (medicare) coverage for autism treatment (ABA/IBI); the lack of ABI/IBI in the school systems and the lack of appropriate housing accommodation for autistic adults.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14177″>Where there is a political will to do something, there is a way.</p>
    <p id=”yui_3_16_0_ym19_1_1483699181886_14180″ dir=”ltr” data-setdir=”false”><em id=”yui_3_16_0_ym19_1_1483699181886_14181″>Andrew Kavchak lives in Ottawa with his wife and two teenage children, one of whom has autism.</p>

    in reply to: Room Three: Discussions about Government Topics #22453
    Andrew Kavchak
    Participant

    Hi Folks,

    Happy New Year!  At this time, the media is always full of news stories about the new appointments to the Order of Canada by the Governor General. I took advantage of the reminder to send the following follow-up message to his Lordship, or whatever he is…

    Dear Governor General, I am the parent of a 15 year old boy who suffers from severe autism. He is non-verbal and requires care and supervision 24/7.  I have learned a lot since my son was diagnosed at the age of two about the needs of persons with autism, and the lack of helpful programs and services from Canada. I’ve also learned a lot about “who is who” in the autism community. In 2004 I nominated Dr. Sabrina Freeman to your office for an Order of Canada to recognize all the outstanding work she has done for the autism community in Canada.  Two years later I was informed that she was not approved for an Order of Canada, but that a Meritorious Service Award, or something similar was possible. I therefore asked that the nomination be considered for that award.  Now, here we are, January 1, 2017, a full 13 years since my initial submission, and I have not received any information about the status of the process or final decision. Face it, your “Chancellery of Honours” office is hopelessly dysfunctional.  I have written to you and your predecessors on several occasions over the past many years. I write again now and ask: “When do you intend to award Dr. Freeman the recognition that is long overdue?”

    Cheers,

    Andrew Kavchak

    Ottawa

     

     

     

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