This topic contains 1,792 replies, has 143 voices, and was last updated by  Andrew Kavchak 6 hours, 20 minutes ago.

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    FEAT BC Admin
    Keymaster

    In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

    This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

     


    —-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

    -Hi everyone!

    These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

    Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

    Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

    Sabrina

     


    How To Fight for Funding for Autism Treatment and Appropriate School Placement

    1. Establish a Paper Trail

    Always take notes, documenting major points of all conversations with government and school officials.

    This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

    Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

    Why?

    It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

    In other words, they canit use discretion unfairly under the cloak of secrecy.

    2. Submit all Requests in Writing

    All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

    3. Set Deadlines for Action

    All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

    Why Set Deadlines?

    When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

    How to icci?

    A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

    Who to icci to?

    Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

    Why send a icci copy?

    The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

    What is the sequence of letters?

    Find out the chain of command of the particular bureaucracy you are battling.

    TOP

    Minister
    Deputy Minister
    Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
    and Social Worker
    Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

    BOTTOM

    Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

    Documentation from Experts:

    In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

    When to hire a lawyer?

    If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

    If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

    How to hire a lawyer?

    The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Viewing 10 replies - 1 through 10 (of 1,792 total)
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  • #22930

    Andrew Kavchak
    Participant

    Hi Folks,

    I was listening to CBC’s “Sunday Edition” on the radio this morning and at the end of the third hour there was a clip of a recent speech by Beverley McLaughlin about her upcoming retirement from the Supreme Court of Canada.  Then Michael Enright stated he would have a feature interview with her next week.  Presumably they will record it during the week.

    So I just wrote a message to the Sunday Edition on their “contact us” webpage, with the following message (copied below).  If any of you would like to similarly make a suggestion to the CBC on what to ask Madame “don’t do as I do, do as I say”, the Sunday Edition can be reached at: http://www.cbc.ca/radio/thesundayedition/contact

    My message to the CBC:

    At the end of today’s show you indicated that you will interview the retiring SCC Chief Justice next week. I hope that you will be able to ask her this question during your interview with her (which I assume will be pre-recorded sometime this week).

    Background: I am a parent of a child with autism. When my son was diagnosed we got absolutely no help from Medicare to provide him with Intensive Behaviour Intervention (IBI) therapy based on the principles of Applied Behaviour Analysis (ABA). We had to resort to the private sector and the cost to us in the first year was over $40,000. This treatment for autism has been the subject of many medical and scientific studies since the breakthrough study by Ivar Lovaas in the 1980s about the benefits of IBI/ABA treatment for kids with autism.

    However, there was a case from B.C….the “Auton” case. The families of kids with autism alleged discrimination in Medicare because this core health care need was not served. The families won at the BC Supreme Court. The province appealed and the families won at the BC Court of Appeal. So the province appealed it to the SCC.

    I was the lone protestor on the lawn of the SCC in June of 2004 during the court hearings and I hoped that the court decision would affirm the lower courts and provide coast-to-coast relief for families of autistic children who were facing catastrophic expenses trying to help their kids get better.

    Of course, every government, federal and provincial, intervened and warned that if the SCC were to dictate what the provinces had to provide under Medicare, the sky would fall and we would encounter an apocalypse.

    In November 2004 the SCC issued a unanimous decision written by B. McLaughlin. Actually, it must have been written by a clerk because it contained errors. Among other things, it suggested that Lovaas’ work was in Texas. However, it was in fact at UCLA….since when is Los Angeles in Texas. That’s just one example which gave many in the autism community the impression that the decision was made before the hearing and that the evidence was not even read or considered. The decision was that anything that involved the spending of public money was entirely up to the legislatures. Thus, one may wonder…what for a Charter that bans discrimination and a court system to challenge governments?

    However, to add insult to injury, about a year later I saw an article in a newspaper indicating that the Chief Justice had gone to Australia and given a speech to law students at Monash University. What did she say in her speech? It included a discussion of the need for courts and judges to stand up to governments and not take instructions or directions from them but to stick to their jobs of interpreting and applying the law.

    My jaw dropped as I read the article summarizing her speech. “What a hypocrite!” I thought.

    While many people across Canada may salute her departure from the bench with fondness and sadness, I have been waiting for this long overdue day for a long time. She’s finally gone. I wish it she would have left a long time ago, but better late than never.

    So please ask her about this and whether she ever considered herself to be inconsistent and had difficulty taking her own advice.

     

    #22925

    Andrew Kavchak
    Participant

    Hi Folks,

    An interesting exchange in the House of Commons yesterday regarding Health Accords, Medicare and ABA for autism! Eight seconds that got to the point for a change!  Too bad the response from the federal Minister of Health was…the usual ostrich head in sand phenomenon.  As least she did not try to dismiss the question by quoting her Cabinet colleague Minister for Persons with Disabilities by making a reference to “sob stories” or something.

    Is the Ostrich replication strategy really the best we can expect from the Minister? Are some petitpas (small steps) truly too much to expect from her on this file before the next election?

    With an answer like the one she gave, which betrays absolutely no interesting in doing anything on the issue, what impact can we say that the recent Senate “autism awareness month” activities, and subsequent letter to the PM, had on the Minister of Health?  Evidently, not much.

    And with an answer like that, what chance does the Liberal Party “working group” on the autism treatment in Medicare resolution have to influence the Minister to take any “grandpas” (big steps)?  Hmm…..

    House of Commons, December 6, 2017

    Mr. Speaker, it is tricky to do this, but I cannot ask my question until I express what I think is in all of our hearts. Best wishes to the Minister of Fisheries as he faces his new health challenges.

    In my remaining eight seconds, will the Minister of Health consider working with the health accords with the provinces to pursue all medically necessary autism spectrum disorder treatments, including applied behaviour analysis, as part of a medicare approved treatment?

    <b>Hon. Ginette Petitpas Taylor (Minister of Health, Lib.): </b>

    Mr. Speaker, we recognize that autism spectrum disorder has a significant and lifelong impact on individuals and their families. Federal investments in research, data improvement, surveillance, and training skills are supporting those with autism and their families.
    There are extraordinary stakeholders across the country raising awareness and providing services to families. Our government will certainly continue to provide support for them and for their efforts.
    #22924

    Andrew Kavchak
    Participant

    Hi Folks,

    Public Service Announcement regarding the Disability Tax Credit…

    If the Ministry of National Extortion and Shakedowns, oops, I mean the Canada Revenue Agency (CRA) is causing you grief with respect to claiming and/or maintaining the Disability Tax Credit, then Autism Canada would like to hear from you!  They are seeking the stories about your experiences with the CRA on this issue.  Here is some info on their Facebook page:

    https://www.facebook.com/<wbr />autismcanada/photos/a.<wbr />468163920804.244318.<wbr />52013555804/10155334501765805/<wbr />?type=3&theater

    Last week Autism Canada had some meetings in Ottawa and held a press conference which generated some media buzz (see links below), however, their file is still open in this matter and they want to hear from families who are experiencing problems.

    Media hits:

    Global (national, Toronto and Kingston – possibly more):

    https://globalnews.ca/news/3889160/cra-disability-tax-credit-autism/

    CTV:

    http://www.ctvnews.ca/health/autism-group-calls-on-cra-to-make-applying-for-disability-tax-credit-easier-1.3701665

    iPolitics:

    https://ipolitics.ca/2017/11/29/autistic-canadians-struggling-access-tax-credit-says-activist/

    iPolitics:

    https://ipolitics.ca/2017/11/30/ipolitics-scheer-gun-control-disability-tax-credit-secret-ballot-vote-lead-hill-agenda/

    CBC:

    http://www.cbc.ca/news/canada/prince-edward-island/canada-revenue-agency-battle-pei-mom-daughter-autism-souris-1.4427991

    Ottawa Life magazine:

    http://www.ottawalife.com/article/autism-canada-calls-for-greater-equity-and-transparency-in-disability-tax-credit-procedures?c=39

    CPAC:

    http://www.cpac.ca/en/programs/headline-politics/episodes/55986998

    CTV:

    http://www.ctvnews.ca/video?clipId=1268832&playlistId=1.3702488&binId=1.810415&playlistPageNum=1&binPageNum=1&cid=sm:nationalvideo:facebook:post:11302017:autism

    CBC the Current:

    http://www.cbc.ca/radio/thecurrent/the-current-for-monday-december-4-2017-1.4428749/canada-revenue-agency-needs-to-be-more-consistent-with-disability-tax-credits-say-advocates-1.4428891

    CBC PEI:

    http://www.cbc.ca/news/canada/prince-edward-island/canada-revenue-agency-battle-pei-mom-daughter-autism-souris-1.4427991

    CTV:

    http://www.ctvnews.ca/5things/5-things-to-know-on-friday-dec-1-2017-1.3702549

     

    #22920

    Andrew Kavchak
    Participant

    Just when you think you’ve heard it all….

    http://www.cbc.ca/news/politics/thalidomide-survivors-hehr-allegations-1.4433539

    Yup, that’s right….the Federal Minister of Sport and Persons with Disabilities Kent Hehr, who is a quadriplegic, had a meeting with some Thalidomide survivors and made some rather stunning comments, such as: “everybody has a sob story”, and that their problems are not as difficult in their adult years as they were in their youth.  The thing about life expectancy and the benefits to the government is disputed, so I guess the other comments are acknowledged.

    The tragedy here is that the Minister for Persons with Disabilities seems to consider every disabled person’s story “a sob story”.  No wonder the federal government has not used the words “National” – “Autism” – “Strategy” consecutively in one sentence since Trudeau was elected.  It is just another sob story unworthy of serious attention perhaps?  I remember when I was protesting on the Hill many years ago getting a very offensive email from a person in Winnipeg who was at the far end of the “Libertarian” political spectrum.  He suggested in the most blunt terms that Medicare should exist and that everybody should be responsible for their own healthcare and he hoped that my campaign would cease with my drowning in the Ottawa river.  A real sweetheart him. Anyways, the comments of this “Minister” are rather insulting to every person with a disability (or should I say “with a sob story”) and anyone who cares about those with disabilities. They are also worrisome.  It would be nice to think that the Minister might actually care about his mandate and have some respect for his Department’s “clients”… but evidently in this case there seems to be a problem.  Justin….time for a Cabinet shuffle!

    I hope someone founds “The National Sob Story Party for the Advancement of Disability Rights” and runs a candidate in the guy’s riding and brings lots  and lots of boxes of Kleenex to the all candidates debates meetings, etc.

     

     

    #22917

    Andrew Kavchak
    Participant

    Hi Folks,

    Autism in the House and the Senate this week…

    Although the speeches in the Senate about autism trailed off a bit after the end of “awareness month” in October, there has been a recent addition (copied below).

    In contrast, the recent references to autism in the House of Commons all seem to be in the context of questions about the Disability Tax Credit.  In a recent exchange Mike Lake spoke up about it and expressed concern about the “frustration” and “heartbreak” that some families feel.  Notwithstanding the frequent accolades of Mike Lake for his “tireless championing” from some members of the autism community, I did not see a single speech of his in the House during all of “Autism Awareness Month” – How come?  Was it because he considered just a Senate thing unworthy of Tory support in the House? I don’t know…just wondering.

    It also seems to be noteworthy that in the context of a question about the Disability Tax Credit, Lake manages again to raise his pet “Canadian Autism Partnership” bureaucracy project, and describes it now in new mythical terms as being a source of “expert advice”.  I checked the “CAPP Executive Summary” and did a search of the term “expert”.  It does not come up once.  The term “expertise” comes up four times, such as at the end of the document where they acknowledge and thank people who were “instrumental” in the development of the business plan.  After thanking Mike Lake for his “tireless championing” the Executive Summary thanks the members of the “working group” who represented “some of the best expertise” about autism in Canada.  This tendency to describe the CAPP as something bigger and different than what was described in their proposal reminds me of Erin O’Toole’s question in the House a few months ago where the Tory MP described CAPP as a “national program” or something like that and criticized the Grits for turning it down.  As time goes on we should not be surprised to see in future descriptions of CAPP by its supporters that it would retroactively assume some attributes of biblical dimensions.

    From Senate Debates, Thursday, November 30, 2017:
    <h2 id=”70″>Autism Families in Crisis</h2>

    <h3 id=”71″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>

    On the Order:

    Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.

    <b>Hon. Marc Gold: </b>Honourable senators, I rise today to add my support for the establishment of a National Autism Strategy and my admiration for the work of the Senate and, notably, our colleague Senator Munson, who has done much to raise awareness about autism in Canada.

    Let me begin by saying a brief word about the idea of a national strategy. In a word, it’s a good idea because it helps to focus attention on a problem of national dimension, and it can serve as an organizing framework within which a broad variety of concrete initiatives can be undertaken.

    But many of these initiatives fall within the jurisdiction of the provinces, whether in the area of health, education or employment, or, indeed, are undertaken by the not-for-profit sector. That’s not to minimize the important role the federal government can and should play in support of these initiatives through a judicious and appropriate use of its constitutional powers over taxation and spending. The fact remains, however, it is the concrete initiatives and not the strategy as such that will make a difference on the ground to the individuals and the families who are affected by ASD.

    Let me speak briefly to a few areas where we as senators and as citizens acting locally can do our part to move things forward <i>sur le terrain</i>.

    First, our networks of contacts and our influence could be leveraged to improve the resources and services offered to people with autism spectrum disorder in the provinces and territories we represent. For example, my research shows that Quebec needs to do more about offering early screening. Furthermore, families are not getting anywhere near the support they need from the public sector. This is mainly due to the way resources are divvied up by provincial departments. In Quebec, children with ASD receive services through the department of health and social services until the age of five. After that, the needs of the children and their families are supposed to be met by the school system, which falls under the department of education. In all honesty, the support offered after the age of five is grossly inadequate.

    What Quebec needs, and I would be surprised if this is not the case elsewhere in Canada as well, is a more integrated support system. As senators, we can put our networks and influence to good use in order to improve the services provided at the provincial, territorial and local levels. We can also support non-profit community initiatives that have a positive impact on people with ASD.

    Let me tell you about one such initiative that’s rather close to my heart.

    While doing volunteer work in Israel, a woman from Montreal participated in a project where children with ASD spent time working at a kennel that raised and trained service dogs. When she returned to Montreal, she discovered there was no such program in Quebec. So working with National Service Dogs, based in Cambridge, Ontario, which had been providing dogs to families since the late 1990s, she created a not-for-profit organization called PACCK, Positive Assistance and Companion Canines for Kids, to bring the benefits of this program to Quebec.

    The benefits that specially trained dogs can bring to children and their families affected by ASD are enormous and well documented in the scientific literature. These benefits include providing increased safety for the child and helping control problematic behaviour by commanding the dog, teaching the child responsibility, lowering aggression and frustration levels, providing comfort to the child when he or she is upset, and overall, reducing stress levels that allow for greater participation, whether in education or social and leisure activities.

    Launched in 2008, PACCK obtained its first four puppies, trained them over an 18-month period and then placed them free of charge within families.

    I forgot to mention that the woman who founded PACCK is my wife, Nancy Cummings Gold.

    However — there’s always a “however” — the cost of raising and training a service dog was and still is considerable. It’s in excess of $24,000 per dog. Raising enough money to continue to provide such dogs free of charge to families in need proved far beyond the fundraising capacities of this small start-up, especially given the economic crisis that hit soon after its launch in 2008.

    Fortunately, however, the project was picked up by the MIRA Foundation, building upon the research it had begun as early as 2003. Supported by several large foundations and private corporations, the MIRA Foundation began providing specially trained dogs to families in 2010 and today provides dogs to 100 families affected by ASD. But MIRA can only meet half of the demand for its dogs, and even families who qualify have to wait up to two years to receive a dog. Still, it is meeting an important need, and many families are benefiting.

    So honourable colleagues, if you like puppies and kids, perhaps this is a project that resonates with you. And if so, why not look into the possibility of introducing it in your community? Maybe you know of a philanthropic foundation or a group of companies that would be interested in supporting this project.

    As important as it is to address the needs of kids and their families, it’s not enough, because kids grow up to be adults, and we need to figure out ways to provide meaningful work and other opportunities for adults so they may participate more fully in society, as is their right as citizens. Governments can play a role here, to be sure, but it’s ultimately the private sector that can make a real difference in this regard. The example of Spectrum Productions, which was mentioned by Senator Munson in his earlier remarks and representatives of whom were with us in the Senate a few weeks ago, is a wonderful example of what can be done.

    Honourable senators, whether our focus is on kids or adults, we can all find a project that fills a need and speaks to our particular interests. And we can lend a hand, whether financially if we are able to, as a spokesperson or as a champion behind the scenes. Every bit helps.

    Finally, allow me to say a word about what we can learn about ourselves from people with ASD. As I read our debates, much of our focus has been on ASD as a disability, and understandably so. But I think there is more to be said and learned. People with ASD relate to the world differently, and in so doing, their manner of being does not always fit in with what we expect, of what we think of as the norm. So it is understandable that many of us find it hard and challenging to see beyond their differences and the differences that they present.

    As a result, it is easy to ignore — literally to be ignorant of — the contribution that people with ASD can and do make to our society. But we can and must challenge ourselves to look beyond the assumptions and mental structures that we have inherited, our unreflective understanding of what is and is not normal, to see that the different ways in which people relate to their world can be a strength to us all; that we have something to learn, not only about how people with ASD see the world, but how we too might learn to see the world somewhat differently.

    Honourable senators, we rightly celebrate the diversity of Canada, so may our work in the Senate and the establishment of a national strategy on autism be the occasion to expand our conception of diversity, to include, to legitimate and indeed to celebrate the contributions and perspectives that our fellow citizens with ASD can offer to us. Thank you very much.

    (On motion of Senator Housakos, for Senator Martin, debate adjourned.)

    From the House of Commons Hansard, Friday, December 1, 2017:

    Taxation

    <b>Hon. Mike Lake (Edmonton—Wetaskiwin, CPC): </b>

        Mr. Speaker, it has now been 253 days since the finance minister rejected the Canadian autism partnership, and it is very clear that the government has no idea how it is going to replace it. This broad partnership would have worked with autism organizations and governments across the country, providing expert advice on issues facing people with autism, issues exactly like the serious one raised by Autism Canada in regard to the disability tax credit.
        Families are using words like “frustrating”, “maddening”, and “heartbreaking” to describe the situation, but most of all what they want to know is what the government is doing to fix this.
      Mr. Speaker, we recognize that autism spectrum disorder has a significant impact on families and individuals. Federal investments in research, data improvement, surveillance, and training skills are supporting those with autism and their families. There is an extraordinary network of stakeholders across the country raising awareness and providing services to families. Our government will continue to support these efforts through our programs.

    <p class=”floorlanguage”><b>Mr. Jacques Gourde (Lévis—Lotbinière, CPC): </b></p>

        Mr. Speaker, communication problems abound at the office of the minister responsible for the Canada Revenue Agency.
        Several organizations that advocate for the well-being of persons with disabilities want to talk to the minister. Autism Canada recently sent a letter requesting a conversation with the minister.
        Can the Minister of National Revenue confirm when she plans to meet with the representatives of Autism Canada?
        Mr. Speaker, I would like to inform my colleague that I met with the representatives of Autism Canada this week.

    Mr. Speaker, families with children who have autism need the disability tax credit to help offset the costs of expensive therapy. The Liberals are nickel and diming these families to pay for their out-of-control spending. It is a disgusting attack on vulnerable Canadians. Do these families not have enough to deal with without having to fight the Liberals to get the credits that they need?

        Mr. Speaker, last week, we proudly announced that we are re-instating the agency’s Disability Advisory Committee, which was abolished by the Conservative government in 2006.
         We recognize that autism spectrum disorder has a significant and lifelong impact on individuals and their families. Federal investments in research, improved data, surveillance, and training will help support people with autism and their families.
         There is an extraordinary network of stakeholders across the country, raising awareness and providing services to families. Our government will continue to support their efforts through our programs.

     

     

    #22916

    Andrew Kavchak
    Participant

    Hi Folks,

    I was watching the news and surfing between the usual CBC, Global and CTV outlets last night when something came on Global which was really disturbing. Of course, for most of us, this is nothing new, but the report was like hitting a brick wall.  I tried to find it, and came up with this…

    Autism Nova Scotia sees 50 per cent hike in calls about complex autism cases since 2016

    Please take a look and scroll down to the video of the press conference with the mother’s speech. The boy is nine years old and severely impacted by autism.  A few months ago his skills took a dive, and his aggression picked up.  He was in hospital for a while and now is returning home, but the family is not being given the support their son needs.  I could not watch it all.  At one point in tears she states that here she is….in front of strangers, telling her family’s story in the hope that others will speak up, because she knows that they are not alone.  This sounds so familiar.

    Indeed, mom, you are not alone.  There are lots of others like you with children who are severely impacted by autism and who are struggling every single day.

    The story is from Halifax.  On the TV news report last night they concluded with a soundbite from the head of Autism Canada indicating that we need a National Autism Strategy and that the government should make dealing with this kind of situation a priority. Bravo!

    I could not find the quote of the Autism Canada President in this web story, and instead there seem to be some quotes from some people with Autism Nova Scotia….was one of the senior executives from that provincial outfit not one of the main lobbyists for the CAP “issue identification bureaucracy project”?  Well, here’s an issue that has been around for a while and which needs immediate attention.  No need to get a business plan together to engage in roundtable consultations with “self-diagnosed” or “self-advocates” (whom I have never seen or read about addressing how to deal with the tragic cases like this one of children who are most severely-impacted by autism).  Why not lobby for this and other related issues that are well-known to be addressed now rather than going on an on lobbying for a bureaucracy plan that has already been rejected and which, if implemented, would delay the possibility of substantive issues being addressed any time soon?

    If there is any concern that this incident may not be a frequent one, the similarity with another story (coincidentally also aired by Global) on the same day about another family’s tragic situation in Ontario is elaborated on here:

    Mother of self-harming boy with autism says she has nowhere to turn

    Check out the video in this report.  The challenges faced by the mother with a severely affected child are similar….and the local “children’s hospital” is of marginal helpfulness.  Thank you Global for reporting these tragic stories.  What sort of a society are we that do not feel a need to recognize that some people need help and that not all kids with autism have “rain man” hidden skills and make good doctors (or actors) on TV?  Autism is not just Aspergers’ and high functioning “self advocates” that seem to be so well presented by the “autism awareness”  crowd at the annual rallies on the Hill in Ottawa.  It also includes some low functioning kids who need help, but I’ve rarely, if ever, see their stories in the “awareness” campaigns.

     

    #22911

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, they did it again.  Another perceived social problem with lots of pressure to do something….and two years later…voila! …The Prime Minister announced this afternoon a new “National Housing Strategy”.

    I was listening to CBC radio this afternoon and the news report had an item on the announcement and there was a lengthy quote (soundbite) of Trudeau speaking about the National Housing Strategy and how it will help Canadians and was a solution, etc. bla, bla,…and I wondered….he could have replaced the word “housing” with “autism” and it seemed to me that his words would have been a good match.  So I tried to find the PM’s statement on the net, and so far I can’t find it (funny how some things they put out for public consumption on their websites and Twitter, etc., but other things are kept well hidden).

    But I did find this….

    https://www.placetocallhome.ca/index.cfm

    Which seems to be the Government of Canada’s website for the National Housing Strategy.

    The website has all the usual “summary” bells and whistles for those with short attention spans, and the strategy itself can be downloaded in pdf format. It is 40 pages long. The National Minister for Families, Children and Social Development (I did not know that we even had such a minister…..where the heck has he been hiding?) states in the very beginning that this is Canada’s very first National Housing Strategy.  Wow.  That’s significant.  So the fact that tehre is no precedent for this is not an obstacle to creating one.  $40 Billion dollars.  A new national strategy with lots and lots of money.  Count the zeros!  $40,000,000,000!  Apparently 25,000 Canadians are chronically homeless, and 1.7 million are in “housing need”.  The objective over the next ten years is to remove 530,000 Canadian families (note the reference to “families”) from “housing need” and reduce chronic homelessness.

    When it comes to autism, the CDC figure is that 1 in 68 is on the spectrum.  Since the population of Canada is 36 million, that would make about 529,000 Canadians on the spectrum. Assuming that each one of those persons has two parents and one sibling, that would mean another 1,587,000 Canadian affected by a family member who is on the spectrum, for a total of 2,116,000 Canadians affected either directly, or really closely as a family member, by Autism Spectrum Disorder.

    Of course, not all persons on the spectrum require much help. Those who are high-functioning sometimes seem to be doing quite well.  But for those who are severely affected by autism, what are the costs?  We know that a Cadillac ABA program costs $60,000 a year.  After four years, that’s $240,000.  In some places, (I know, I know, certainly not Vancouver or Toronto), that can buy a house, a townhouse, a condo, or pay $1,500 as rent for 160 months or just over 13 years.

    I guess the point I am trying to make is that people need housing and the federal government steps up to the plate with an unprecedented strategy and a lot of money (and no complaints or discussion about “jurisdiction”).  Some people need access to autism treatment and yet we can’t even get the federal government (either the previous Tories or the current Grits) to say the words “National Autism Strategy”.  They won’t even discuss the concept.

    And how will the strategy address housing for the disabled?  Well, on the website there is a “story” about housing for those with intellectual disabilities.

    https://www.placetocallhome.ca/stories/011-creative-housing-people-intellectual-disabilities.cfm

    I just pray that this strategy won’t result in the same boondoggle that the Auditor General reported on yesterday regarding the Phoenix so-called “pay system” which seems to be a billion dollar sink hole or black hole, or some sort of hole where money goes in and does not come out.

     

     

     

     

    #22900

    Andrew Kavchak
    Participant

    Hi Folks,

    While some federal politicians often remind us that there is no role for the federal government in autism public policy because “it’s provincial”, the alternative treatment of other illnesses sometimes smacks of hypocrisy.  Of course it is always possible to say “but that’s different”, and sometimes the MPs really prove that it is (in both the nature of the illness and how the political arena deals with it).  One example is reflected in the following statement that was made in the House of Commons yesterday (Wednesday, November 8, 2017) which offers some interesting ideas for potential future autism treatment lobbying:

    “Diabetes Day

    Mr. Speaker, today is Diabetes Day on the Hill.
    Across Canada, 11 million people live with diabetes or pre-diabetes. I want to thank the representatives of Diabetes Canada here today for their hard work and advocacy.
    To mark this day, I am launching the defeat diabetes step challenge. Each of us can lead by example, embracing a healthy lifestyle and increasing our physical activity. During the challenge, we will be tracking the footsteps of members who participate, and encouraging some friendly competition.
    I challenge each member in this place to walk more, take the stairs, skip the bus, and do their part to champion physical activity, which can make a difference for those living with type-2 diabetes.
    I hope you, Mr. Speaker, and all members will join the all-party diabetes caucus in the Commonwealth Room at 4:30, and take up the challenge. Together, we can defeat diabetes. It starts with step one.”
    Here are some thoughts/observations:
    1) No question, diabetes is a serious illness. I applaud the politician on the worthwhile initiative.
    2) I do not recall any day ever being declared “Autism Day”.  Instead it is “Autism Awareness Day”.
    3) Note that the number of people affected by diabetes is very high, but it includes those with “prediabetes” (which refers to blood sugar levels being high, but not high enough to be diagnosed with diabetes).  Well, perhaps when our community provides the figures for those affected by autism, we should not just give the figure of those who have been diagnosed as being on the autism spectrum, but also include a figure to represent all the family members that are directly affected by that.  Thus, if one person is on the spectrum, there are two parents and perhaps one sibling who are also affected (I think it would be absurd to suggest that parents are only “indirectly” affected because any responsible parent with a child who is diagnosed on the spectrum, especially if it is a severe case, is very much directly affected and to suggest otherwise is insulting).  In other words, the PHAC is supposed to issue a first report next year (that’s coming soon!) with some prevalence rates and figures.  It may be assumed that they will be similar to the 1 in 68 figure that is current with the CDC.  However, if we wish to subscribe to the “autism and preautism” mode of thinking, I hope the report will indicate the number of Canadians that are affected by autism as including both the people that are diagnosed with it, and then the number of close family members who are affected by it 24/7/365 for years.  Perhaps the larger number may open up some eyes on the Hill among those politicians who can do something and make a difference.
    4) The MP took an interesting approach…she “challenges” other MPs do to something.  And not just something for themselves, but something that could “lead by example” (note: the “leadership” concept here which we’ve been asking for) and “…do their part to champion physical activity, which can make a difference for those living with…”  Well, on the autism front, how about some leadership and championing autism treatment and access to it, which scientific studies and evidence have shown can make a difference in the lives of people with autism?  Will any MP challenge other MPs on “Autism Day” to do something similar (or not similar) to “make a difference”? Just wondering….
    Nonetheless, I like the “together we can defeat it” and it starts with “step one” can do attitude.  I just wish they would apply it to autism someday soon.
    #22897

    Andrew Kavchak
    Participant

    Hi Folks,

    Autism was mentioned again in the House of Commons yesterday, Monday, November 6, 2017 (my comments are below):

    “Health

    Mr. Speaker, on October 21, the health minister and I were invited to the Pacific Autism Family Network Hub in Richmond.
    Our tour of their facility was both eye-opening and heartwarming.
    This centre is a one-stop shop for special programs, support services, and specialized resources for families affected by autism spectrum disorder and related disorders.
    Created through the vision of Sergio and Wendy Cocchia, and many others, the Hub is the first of its kind in North America.
    I am grateful to Sergio, Wendy, and everyone at the centre for the warm welcome they gave me and for everything they do for so many families. I wish them every success with their expansion plans, which will allow them to extend their specialized services to more families across British Columbia.”
    The fact that the federal Minister of Health and an MP on the Government side visited an autism centre is great.  Clearly, autism was on the agenda, at least during the visit.  But what was the message that was delivered?  What did the Minister of Health learn from the visit?  What can the autism community expect in terms of any new approach from a possibly “newly-enlightened” Minister?  Well, apparently, not much.
    This reminds me of the period when I was lobbying then opposition health critic Steven Fletcher about the lack of autism treatment under Medicare and the need for federal leadership (this was back in 2004).  He made a huge effort to find my unlisted phone number to call me at home to talk about it (he said he had “no idea” and was glad to get my autism literature pamphlets, etc. – thanks to Brenda Deskin for producing them).  And then what?  Well, a few years later I met him on the Hill when he was a Parliamentary Secretary on the Government side. He told me that he had visited the “St. Amant Centre for autism” in Winnipeg and came away from that visit under the impression that everything was “fine”.  He told me that the autism community should get its “act together” or something like that because he said the situation in Winnipeg (where he was an MP) was OK, and so from his perspective, it was no longer a matter that required any federal attention.  Great.  Just great.  Thank you St. Amant for your contribution to our efforts.  We try to bring the difficult situation of thousands of Canadian families who are spending thousands of dollars in the private sector for health care (ABA treatment for their child with autism) to the attention of politicians who can do something about it, and after just one visit to one “autism centre”, suddenly the member of Cabinet perceives the problem as non-existent.
    What do the people at these centres say, and what do they show, politicans like this who visit?  The staff should hopefully understand that a visit from the Minister of Health represents an opportunity to speak not just about what they are doing at their centre, but what is missing elsewhere and what the Government could and should be doing to help across Canada.  It is nice to read that the visit was “eye-opening” and “heartwarming”.  Who does not like a “feel good” story?
    However, the MP’s words raise all kinds of questions.  Regarding the creation, why is it that it was not the Government that created the centre?  Nothing wrong with some initiative from Canadians, but whose responsibility is it to provide the services in question?  Is this a private centre or a public centre? While the founders had a wonderful vision, and it sounds great that it came to fruition, did the Government get the message, that if this one is so good, that they should create more such centres across the country?  Nope.  Instead, the MP says he wishes them well in their continued “expansion plans”.  Sounds like it has nothing to do with the Government. This is odd, as the so-called “PPP” (private-public partnerships) projects have been increasingly popular with cash-strapped governments and when they contribute to something, they always like to boast about it and take corresponding credit.  None here.
    Are there any other disorders that are as pervasive and prevalent across our society as autism, and for which the Government Minister and reps visit places of private initiative that fill the existing gaps (resulting from Government non-activity) and respond to it by simply saying “carry on”. Instead of saying, “this is helpful, we’ll undertake to make this available to all Canadians who need it across the country”, they just seem to provide the usual back-slapping “way to go!” speech, and walk away.
    Actually, I should point out that it is the backbench MP who delivered that message in the House….I saw nothing from the Minister of Health on the subject.  I presume the Minister provided the back-slapping support in private for fear of raising expectations if the word ever got out that the Minister was impressed by something.  I also presume that the provincial government is providing some support in the creation, construction and ongoing operations of the centre, but I have no info about this and obviously the feds did not think it was worth mentioning next to the names of the individuals they identified as being the heroes of the story.
    #22895

    Andrew Kavchak
    Participant

    Hi Folks,

    Ottawa has two universities (University of Ottawa and Carleton University).  During the past “Autism Awareness Month”, I was somewhat surprised to notice the absence of any statement from Mike Lake. He usually gets up in the House of Commons on “Autism Awareness Day” every April and makes a short speech in the House about what a wonderful child his son is and how his family appreciate the experience of having a child with autism (or something like that), but does not seem to address the public policy gaps and outline what needs to be done (although there was some of that during the debates over his motion on the funding of the CAP project).

    However….it appears that last week Mike Lake brought his son, at the invitation of the Carleton University Conservative Party student club, to give a talk about “autism awareness”.  Apparently, the event was organized by the Conservatives’ club as they wished to show that Conservatives “care” and are about “compassion”, etc.   While newspaper articles rarely give a comprehensive account of what was said and done at an event, this article had some gems.

    To me, the key part of what was reported was:

    Lake began his presentation by telling the crowd that assistance for families that have a child on the autism spectrum is severely underfunded in Canada and all political parties must band together to create a solution. According to him, there are a few key things that can improve to assist families that have a child with autism. “Early diagnosis is key. For some parents with children affected with autism spectrum, it can take two years to get diagnosed, and then two years to start treatments,” Lake told the crowded room.”

    1. I got the impression that Mike Lake’s idea of parties “band[ing] together” consisted of other parties supporting his party’s (negligible or nor-existent) efforts and never the other way around.  Did Mike Lake appear at Senator Munson’s recent “autism roundtable”? Nope. Has Mike Lake publicly expressed support for the Senate’s motion to bring their report from 2007 to the PM’s attention? I have not found such a statement anywhere…..perhaps because the report contained a recommendation that the federal government negotiate a funding formula for access to treatment…I’m under the impression that he never really drank the Kool-Aid and does not believe that the federal government should play any such role.
    2. What is his “solution”?  The article makes reference to him being an “autism awareness champion” (correct! he’s certainly does appear to be an “access to autism treatment under Medicare champion”) and that he worked to try to create the CAP which was not approved by the House.  So his solution appears to be CAP, which is no solution at all. It is interesting to note that the “Medicare for Autism Now” folks previously wrote to the CASDA and CAP project folks asking them to release the complete financial statements of the two year “working group” project to develop the “CAP Business Plan” and to my knowledge, they received no response and the detailed financial statements (not the consolidated kind that don’t show the interesting details) have not been publicly released.  If anyone is aware of them having been released, please let me know. Such lack of openness and transparency should raise red flags.  Who spent the money and who received it (or other benefits)? Just asking…
    3.  While the emphasis on early diagnosis is good, there is no reference to ABA, but instead “treatments”.  Thus, the truly key issues of there being one treatment with science and evidence to back it up, and the lack of access to it under Medicare, are not raised.  So the people walking away from these kind of events believe that their awareness of autism is raised likely have no clue as to the some of the most important elements of the overall autism public policy debates and issues. The “Auton” case went to the SCC in 2004 and the crucial issues raised there were unresolved as the court said that the spending of any public funds was up to the legislatures.  The issues are still unresolved, in part, because legislators like Mike Lake don’t mention them. So much for awareness.

    From: http://charlatan.ca/2017/11/carletons-conservatives-raise-autism-awareness/
    <h1 class=”entry-title post-title”>CARLETON’S CONSERVATIVES RAISE AUTISM AWARENESS</h1>
    November 4, 2017

    by Sarah Sibley
    <p class=”p2″>Carleton’s Conservatives raised more than $400 at its first fundraiser for Carleton’s chapter of Autism Speaks on Oct. 30.</p>
    <p class=”p2″>In attendance were two special guests: Mike Lake, the Conservative Member of Parliament (MP) for Edmonton-Wetaskiwin, and his 21-year-old son Jaden.</p>
    <p class=”p2″>According to Lake, Jaden was diagnosed with autism at the age of two and is non-verbal, meaning he is unable to communicate through speech. Lake said his son communicates via writing and has a comprehensive skill set, including memorization skills and “impeccable” organization skills.</p>
    <p class=”p2″>Lake is a well-known advocate for autism awareness in the Canadian government. Annually, he gives a speech in the House of Commons on April 2, which is Autism Awareness Day. He has also worked with different political parties in an attempt to create the Canadian Autism Partnership, which was not passed in the House of Commons.</p>
    <p class=”p2″>Julia Parsons, the president of Carleton’s Conservatives, said that the group came up with the idea to ask Lake to speak when they realized that they needed to focus on other social issues beyond political leadership.</p>
    <p class=”p2″>“Tonight’s about spreading awareness and showing that as Conservatives, we care,” Parsons said. “We noticed on campus that we need to do more to show what Conservatives are about, which is compassion. We are compassionate people, and we want everyone to have equal opportunity and success.”</p>
    <p class=”p2″>Lake began his presentation by telling the crowd that assistance for families that have a child on the autism spectrum is severely underfunded in Canada and all political parties must band together to create a solution. According to him, there are a few key things that can improve to assist families that have a child with autism.</p>
    <p class=”p2″>“Early diagnosis is key. For some parents with children affected with autism spectrum, it can take two years to get diagnosed, and then two years to start treatments,” Lake told the crowded room.</p>
    <p class=”p2″>Lake said that it is crucial to embrace people who seem different. He said big transitions are also very important for autistic children, whether it be moving up a grade level, or having jobs.</p>
    <p class=”p2″>“Jaden was included in a regular classroom throughout his schooling,” Lake said in an interview with <i>The Charlatan.</i> “We all believe that the other kids were made better as well, and they are more aware by having Jaden in his class. I think it had a real impact on them.”</p>
    <p class=”p2″>Showing videos of himself, Jaden, and the rest of his family, Lake painted a colourful picture of what his family has experienced, as well as how accepting people are of Jaden.</p>
    <p class=”p2″>Liz Tuomi, a second-year public affairs and policy management student and member of Carleton’s Conservatives, said the event was “eye-opening.”</p>
    <p class=”p2″>“Tonight got emotional. I was just unaware of what they face. I think what is really important is spreading awareness,” Tuomi said.</p>
    <p class=”p2″>Lake stressed that it is not only individuals with autism that benefit from inclusivity, but others around them too.</p>
    <p class=”p2″>“We ought not fear differences. We’ll be better as a society when we embrace incredible potential, our whole potential, of people who may not always think, look or act like we do,” he said. “Too often we write that off as a negative, instead of embracing the areas that may compliment our own skills and abilities.”</p>
    <p class=”p2″>Lake added that he wanted people who were not able to attend the event to know that even though people with autism appear different, they still possess incredible potential.</p>
    <p class=”p2″>“We need to rethink the word ‘normal.’ For every one of us, our normal is what we’ve experienced in our lives. I think too often, we’re afraid [of] things that are different and try to protect ourselves from what is different,” he said.</p>
     

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