This topic contains 1,765 replies, has 143 voices, and was last updated by  Andrew Kavchak 12 hours, 55 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.

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  • #22859

    Andrew Kavchak
    Participant

    The Supreme Court of Canada decision in the Auton case of 2004 was briefly discussed in the Senate yesterday.  I don’t recall any federal politician ever talking about the Auton decision in Parliament so far.  I wonder what might have brought this historic case from 13 years ago to the Senator’s attention.  Perhaps the Library of Parliament, or one of the staff researchers, produced a background “brief” document for the politicians that ask for background information.  I would love to get a copy.  There were several that were produced at the time of the 2007 Senate committee hearings.  One of them that described the differing natures of provincial programs at the time is available here:

    https://lop.parl.ca/content/lop/researchpublications/prb0622-e.htm

    From the Senate Debates of Tuesday, October 17, 2017:

    https://sencanada.ca/en/content/sen/chamber/421/debates/147db_2017-10-17-e#82
    <h2 id=”82″>Autism Families in Crisis</h2>
    <h2>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h2>
    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. Marilou McPhedran: </b>Honourable senators, I rise today to speak to the inquiry on autism that was tabled in the other place by Senator Munson on September 28.

    As October is Autism Awareness Month, it is important for us as senators and members of communities to review our knowledge and our commitment towards persons with different abilities. It also happens to be the tenth anniversary of the report tabled by the Standing Senate Committee on Social Affairs, Science and Technology called<i> Pay Now or Pay Later: Autism Families in Crisis</i>.

    This report, adopted by the Senate in March of 2007, outlines key recommendations including:

    genuine consultation with all stakeholders, including individuals with autism for components of the National Autism Spectrum Disorder Strategy, such as treatment, education and respite care for families;

    appropriate level of funding from the federal government;

    implementation of a national public awareness campaign for the enhancement of knowledge and understanding about autism spectrum disorder;

    creation of a knowledge creation centre which includes an Internet-based web portal for reliable data on autism information;

    creation of an autism research network followed by substantial funding;

    addressing the human resource issues across provinces and territories within the field of autism spectrum disorder;

    and ensuring the proper qualification of autism as an eligible disability.

    I salute Senator Munson and his colleague senators for the 2007 report and would like to extend my thanks for their diligent work on this issue. I wish we could say that their recommendations have been implemented — even a few of them.

    However, Canadians have a lot to learn about autism and we must continue to stay on top of this challenge, one that many Canadians are up against.

    Senator Munson spoke on October 3 about slow progress. Sadly, I must note that the Supreme Court of Canada ruling in 2004 — <i>Auton v. Attorney General</i> — allowed provinces to refuse to fund applied behavioural therapy for autism, and we are still struggling with the consequences of that decision as a country.

    This is one of the decisions of our Supreme Court that did not extend section 15(1) of the Canadian Charter of Rights and Freedoms, the quality protections to persons living with disability. Since approximately 1 in 68 Canadians has some form of autism spectrum disorder, it is essential to understand the different facets of this disability and seek to establish ways to support those impacted under constitutional and international human rights law.

    Canada has an obligation to all persons with disabilities to uphold their rights and their dignity. All persons are entitled to live their rights, which are not merely a concept for the wealthy or able-bodied. We as legislators must ensure that we respect and uphold the lived rights of all Canadians.

    As we continue to hear more on this inquiry from our Senate colleagues, let us strengthen our commitment to learning more about how to uphold the rights of autistic persons and families, and move forward on the recommendations made 10 years ago.

    I thank Senators Munson, Housakos and Bernard for their leadership on this inquiry thus far and for their dedication in this chamber to disability rights. I invite all honourable senators to promote Autism Awareness Month this month in their communities, to continue to seek to understand the various facets of autism spectrum disorder and to support services being provided to autistic persons so that they, too, can live their rights.

    Thank you.

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

     

    #22857

    Andrew Kavchak
    Participant

    Hi Folks,

    Here’s another story from Montreal that is heart-breaking. So heart-breaking that it really makes me sick.  Why is it that parents of a teen with autism have to declare that they can’t take care of him and effectively give him up to a government agency, before the teen can possibly get some of the help he needs?

    I’m originally from Montreal and always used to be proud of the city when I was growing up.  However, when it comes to the tribalism and the “we know what we’re doing, so butt out” attitude, I kinda get depressed about their attitude sometimes.  I remember meeting with some Bloc Quebecois MPs in Ottawa years ago, including the “health critic” to discuss getting autism treatment under Medicare and a National Autism Strategy.  The meetings were utterly disappointing. While they liked the idea of the feds giving Quebec money (they always claim that Ottawa takes more than it gives), the idea of providing autism treatment under Medicare pursuant to some initiative that would be national in scope was a non-starter for them.  During the debate on one private member’s bill (I think it was Andy Scott’s) many years ago, the BQ health critic gave a speech in the House that portrayed a land of nirvana for the autism community in Quebec with lots and lots of great programs, etc.  Her point was that they don’t need any federal interference on the autism, or any other, front. I remember copying the speech and sending it to a psychology prof at a French university in Montreal who was a specialist in autism and asking him for his thoughts about the Quebec MP’s speech. His reply was that the speech and description of autism services and programs in Quebec was misleading and a load of crap, as were many of the provincial services at the time.

    So….has anything changed over the years?  Well, the Liberals in Quebec took a long time over the past two years to revamp their autism programs.  Based on the recent newspaper articles, it seems like there is still much that needs to be done.  What I don’t understand is how governments can make cuts, and announce new programs that supposedly make things better, when clearly the cuts are steps backward (as the article below describes).

    And so what do the autism awareness enthusiasts think about this story?  I know, I know….this calls for …..MORE AWARENESS!  Well, I think it calls for more action to address the obvious gaps in the system.  This parent who wrote the story is an articulate teacher, but you can be sure that there are more parents like her who may not be as effective as communicating and whose stories don’t make it to print.  In other words, there are many more like this one.

    Speaking of autism awareness, I finally got a response from the Senate “Outreach” folks concerning my inquiry about what’s happening during their autism “resource fair” on October 25:

    “…The event will be taking place on Parliament Hill. It will include a Facebook Live roundtable in the morning (10 a.m. to 11 a.m.) and a resource fair where visitors can learn more about autism (from 12 p.m. to 4:00 p.m.). The Senate is partnering with the Canadian Autism Spectrum Disorder Alliance (CASDA) and other organizations to offer visitors to the resource fair a complete picture of autism, from the point of view of families, researchers, therapists and people living with autism. I would be happy to extend an invitation to both events if you’d like.”

    A “complete picture of autism”?  How about a complete picture of the needs of the community, what is being offered across the country, what the gaps are, and how the Parliament of Canada and the provinces can help eliminate the gaps  (e.g., leadership, money, negotiations with the provinces, setting national standards, passing a law or two? … Just wondering).  Is that really too much to ask for and expect from the Parliament of Canada? I guess that is not what raising awareness is all about.

    I asked for more details about the roundtable participants, the chair (or MC), the agenda, etc. before determining whether I will ask for an invitation (I gather it is “by invitation only”…and I suspect that those who will be invited probably already know a lot about autism and don’t need to raise their awareness levels much).

    On another note, I really want to thank the owners of this board and FEAT BC for allowing me to regularly share my thoughts and post on this board.  Sometimes I just need to speak out, and this board is a great way to do so.

    From: http://montrealgazette.com/opinion/opinion-quebec-ill-serves-autistic-teens-in-crisis-and-their-families
    <h1 class=”entry-title”>Opinion: Quebec ill serves autistic teens in crisis and their families</h1>

    The only way to get my son help was to put him in the care of Youth Protection so they would organize services, Katharine Cukier writes.

    KATHARINE CUKIER, SPECIAL TO MONTREAL GAZETTE

    I hope that Health Minister Gaétan Barrette has read the sections of the damning new report from Quebec’s ombudsman (protecteur du citoyen) that show the damage he has done to health services. It could serve as prologue to our family’s calamity.

    Maybe the doctors who run the province can picture me in the Emergency ward on four different occasions this year, a broken-hearted mom singing songs from Mary Poppins to a sedated, autistic teen strapped to his bed trying to nod his head in time.

    Since the fall of 2016, my son has been going through a crisis. He is not alone. The largest cohort of autistic children diagnosed in Quebec is reaching adolescence; there are hundreds like my son whose hormonal and neuronal changes cause severe behaviour problems. Because he cannot speak, the turmoil is communicated with his fists.

    The government has done little to prepare for this group’s adolescence, let alone their post-age-21 services. The Liberals have decimated the already scant services for autistic people, and thus this difficult phase turned into a nightmare.

    Because of budget cuts, in 2015, the rehab centre that serves autistic citizens cancelled my son’s educator. By August 2016, I was asking for help, but because our “épisode de service” was finished, it took Benjamin punching out his mother in January 2017 for our request to be upgraded. Too little, too late. By then, he needed to be hospitalized in an autism ward at a psychiatric hospital. However, under Barrette’s “reforms,” this unique unit for autistic children has lost half of its beds, therefore reducing the time it will keep teens in crisis from three months to three to four weeks.

    The hospital rightly believes that once stabilized, it is better for these kids to be in a rehab residence with a specialized team. They don’t seem to be aware that there aren’t any in Montreal for autistic teens. As well, in the spring of 2016, 50 per cent of the publicly run centres were closed, because our neo-liberal government prefers the private option. I simply can’t accept outsourcing the needs of  our most vulnerable citizens, intellectually disabled people who can’t defend themselves against what is, according to the ombudsman, often mediocre, understaffed service and even neglect.

    Instead of one longer, effective hospitalization, my son was sent home in March only to be hospitalized again four more times in emergency situations because the rehab centre doesn’t have a crisis residence or even enough trained personnel to  provide intensive support in the home —  by then my son was too dysfunctional and aggressive to live with us.

    And here is the most Kafkaesque part: The only way to get my son help was to declare we couldn’t take care of him. We had to put him in the care of Youth Protection so they would find him a bed and organize services. Imagine, your kid has epilepsy and you can’t get him proper treatment unless you hand him over to Youth Protection? My son has a disability: His acute suffering is no less substantial than a child with a head injury or drug addiction. His human rights are equal to theirs. Why is it so hard to get him help?

    If my son had received the services he needed, a lot of suffering would have been prevented. And it would have cost the public a lot less. If vital services in education and in health had not been reduced by the government, my child would not be deeply distressed, living away from his parents, on a cocktail of powerful tranquilizers.

    While the Liberals toasted their $2.5 billion surplus, my family descended into despair. Our joyful son has been traumatized by his experiences.

    The ombudsman has demanded the government repair the damage. As far as my family is concerned, austerity is a declaration of  war against the weakest members of our society.

    <i>Katharine Cukier is a Montreal teacher.    </i>

    #22856

    Andrew Kavchak
    Participant

    Hi Folks,

    And from the world of “Did they?  Or did they not?” falsification of data and the destruction of credibility in scientific research about … yes, here we go again…. a possible link between vaccines and autism, we find to our deep regret that UBC has now gotten into the act.

    http://www.cbc.ca/news/canada/british-columbia/ubc-autsism-vaccine-paper-retraction-chris-shaw-1.4351855

    http://www.cbc.ca/news/canada/british-columbia/ubc-vaccine-autism-paper-pulled-1.4357568

    Unfortunately, it appears that the original data was taken to China and eaten by a dog who likes homework or something. I sure hope that they eventually are able to confirm what may have happened and what was the motive.  I’m always perplexed by those who would engage in the falsification of science and knowingly promote falsehoods.  Such previous shenanigans were also outlined in Dr. Freeman’s outstanding and very clear book “Science for Sale in the Autism Wars”.  For those of you who like reading non-fiction about fiction, this is a great book.

    But truth be told, I always had a soft spot in my heart for UBC.  I remember visiting the campus as a teenager, and applying, and seriously considered going.  Any university with a nudist beach on campus that was 4,000 kms away from my parents just sounded too good to be true.

     

    #22853

    Andrew Kavchak
    Participant

    Hi Folks,

    Here’s something about “awareness”.

    This morning I was listening to CBC and Anna Maria Tremonti’s interview with Ken Dryden about his new book dealing with concussions in hockey.  I grew up in Montreal in the 70s. Ken Dryden was the superstar goalie for the Canadiens and provided me and all my classmates with some of the most exciting memories from our youth.  I’ll never forget his (and Tony Esposito’s) performance in the 1972 Summit Series with the Soviets.  A few years ago while riding a bus I saw him crossing the street with a box of Tim Horton’s muffins on his way to work. I quickly got off the bus and chatted with him for two blocks before we had to go our separate ways. However, before saying goodbye, I asked him if I could give him a hug.  He granted my childhood wish and made my day. Now if I could only give Paul Henderson that hug that I’ve wanted to give him since he scored that game eight winning goal in Moscow on September 28, 1972 with just 34 seconds left! Thank you Paul Henderson, wherever you are!

    Ok, so what about “awareness”?

    At about 31:35 minutes of the interview (which you can hear at this site:)

    http://www.cbc.ca/radio/popup/audio/listen.html?autoPlay=true&clipIds=&mediaIds=1074145859542&U=%5Bobject%20Object%5D&contentarea=radio&subsection1=radio1&subsection2=currentaffairs&subsection3=the_current&contenttype=audio

    Ken Dryden says something interesting about campaigns to raise awareness.  He points out that people often confuse awareness with action.  He points out that there are those with power, and the rest of us. Many in that second category assume that if they generate awareness, then those with the power will make informed decisions.  However, the awareness raisers are often disappointed that those with power do nothing, and then what do they think the solution is?  To raise more awareness of course.  So they conduct more studies, write more articles, etc. and build a mountain of awareness that is “so high”, “outrageous” and “humiliating”, that something has to be done, but nothing happens.  I thought he was talking about the autism community!

    What Dryden was focusing on was the fact that there is now so much awareness about the negative impacts of concussions on hockey players’ lives that NHL Commissioner Gary Bettman should adopt a rule that hits to the head will not be tolerated and will automatically result in (major?) penalties. Personally, I thought they passed such a law in my son’s minor hockey league several years ago and it seems to help reduce unnecessary hits, but some collisions and pucks or sticks to the head are unavoidable. Anyways, while he was talking about the need for action and not just awareness raising, I thought he could say the exact same things about autism awareness campaigns.

    The UN declared the first World Autism Awareness Day about a decade ago and Senator Munson passed a bill in Canada making the same say (in April) an autism awareness day in Canada. Every year at that time we hear the speeches in the House and Senate and at the rally on the Hill.  However, what we really need now is “autism action day in Canada” and corresponding action.

    October is Autism Awareness Month and the Senate is hosting a special autism awareness day on October 25.  They will apparently host a “roundtable”.  I inquired with one Senator over a week ago about the nature of the roundtable (e.g., who will be there and what is on the agenda, etc.) and my inquiry was flipped over to another Senator.  So far, no response….  Thus, not much “roundtable awareness” for now, although I’m sure some of the usual community “leaders” are involved in the set up for the event.  Will any action result after the roundtable?  I’m looking forward to finding out.

     

     

    #22851

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, from the world of “Is that really possible in a developed and otherwise civilized society?”, here are three stories from our glorious Commonwealth.

    For the first story, here is a quote below…see if you can guess which country it is about…

    “Parents of children with suspected autism are having to wait at least 44 months for diagnoses, prompting a cross-party group of more than 140 MPs to write to the health secretary, [name deleted to make the guessing game a real guess], demanding urgent action.”

    44 months for a diagnosis?

    And a cross-party group of over 140 MPs are putting pressure on the chief health politico to do something?

    Yup, you guessed it…

    From: https://www.theguardian.com/society/2017/oct/14/autism-diagnosis-waiting-times-jeremy-hunt

    Jeremy Hunt is a British Conservative Party politician who has been the Secretary of State for Health since 2012.

    While the 44 months for a diagnosis is disgraceful, I’m impressed that 140 MPs from different parties (presumably including the reigning party) would take the time to raise an autism issue with the Health Minister.  I wonder what it would take for something like that to happen in Canada? Maybe 45 months…

    And now, for the second story, take a guess at which country this story came from…

    “A woman whose son was sexually and physically abused multiple times in a state-funded disability home is calling on the government to shut down the facility immediately.”

    Need a hint?  How about this article headline:

    “Families ask government to shut down Autism Plus following damning Ombudsman report”

    From: http://www.theage.com.au/victoria/families-ask-government-to-shut-down-autism-plus-following-damning-ombudsman-report-20171005-gyuruw.html

    Australia.

    For the third story, I came across a media article about a report compiled by an “Autism Society” and a university that was issued about the the challenges faced by the autism community. The article contained what struck me as nothing new (no surprises) and contained all the buzzwords we are so familiar with, e.g.,  “significant gaps”, “ongoing for years”, “challenges faced…are huge”, “lack of services available”, “exasperation at long wait times”, etc.

    Can you guess which jurisdiction?

    The media report was from 2016 and was recently updated.  It involves the Autism Society of Newfoundland and Labrador working with the MUN (Memorial University of Newfoundland).

    The article and update are here: http://www.lportepilot.ca/news/local/report-identifies-challenges-for-those-with-autism-46057/

    This news is interesting because it suggests that a provincial autism society can do its own “issue identification” exercise in collaboration with a university. I’m glad to see a university taking part in such research. Presumably, several faculties would have an interest in having their students undertake such survey and consultation exercises (e.g., medicine, social work, education, communications, public administration, etc.).

    The creation and issuance of this report is really relevant to the CAP project thing that was proposed a while ago in the House of Commons and rejected by the current Liberal government.  The CAP project proposed to create a new bureaucracy and spend millions of dollars to engage in a number of things, including “issue identification”.  However, as this article identifies, the issues are all already very well-known to the community.  Yet, rather than working to resolve the issues, some people and organizations would rather take the time, and spend the money, to engage in “issue identification”….and when? Oh Lord, when?.. would they be ready to proceed to the next step of doing something to address and eliminate the “identified issues”?

    Well, three cheers for the Commonwealth and its progressive nature!  I wonder if the Royal Family is taking note.

     
    <h1></h1>

    #22850

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, here we go again….another family trying to get ABA for their child, and the school board in Canada’s largest city won’t have it.  Another “Human Rights Tribunal” case for the record books… I wonder how much the “autism awareness” campaigns are helping families in such situations?

    What really bugs me about these kind of stories is that, as we in the community all know, dealing with autism at home on a 24/7 basis can be totally draining, especially in the early years.  And it is not as if you can just “turn it off” at any moment.  And even though we have this tremendous challenge to deal with, the school board officials, school administrators, teachers, etc. sometimes just add to the pile of challenges in such a way as to make things worse. I find it amazing that families are willing to pay for the ABA provider in the schools, and the schools still refuse to play.  Just last year the Ontario government went through a year or so of flip-flopping on their autism program reforms and their last publicity campaign and propaganda announcements would have us all believing that everything is just….fine.  I even saw a picture of the responsible Minister with a big smile on his face.

    Another thing about these stories is that they are often written by journalists who don’t have the background, and who evidently have to slap something together by the publishing deadline to meet their editor’s needs, etc.   The result is that such articles often include some BS that serves as a convenient distraction to satisfy the standard journalistic writing formulas. It is often considered necessary by journalists to present either “both sides” or “multiple sides” of a story in order to appear objective. Unfortunately, in the process, some of the “sides” are summarily described, and thus acquire the credibility that they sometimes don’t deserve.

    One example in this article is the statement: “Although some members of the autistic community have written at length about negative experiences with ABA, saying it hampers their natural way of understanding the world,…”

    Members of the autistic community?  I assume that means people with autism.  And they have “written at length” about how it hampered them and their otherwise natural way of understanding the world…?  How I wish my child had that kind of autism that he would be able to communicate through writing “at length” and provide a detailed analysis of his natural way of understanding the world, and how ABA affected him, etc.   Are these members high functioning?  Or super high functioning?  Maybe not autism, but Asperger’s Syndrome?  Maybe they did not need ABA for whatever they were perceived to need to learn.  Or maybe they did not need ABA at all.  Unfortunately, notwithstanding their ability to analyze and communicate, the message from these “members of the autism community” never seems to be “Hey, I’m so high functioning, that I don’t need ABA to get by, however, those who are low functioning could potentially benefit from it and reach my level of functioning,…at least, that’s what the studies suggest and I support that and hope they can get access to the treatment”.  I’ve never heard that at any “autism awareness” rally or event on the Hill or elsewhere. That’s one of the reasons why I think that the references to “self advocates” is sometimes a prescription for confusion. Quite often the “self advocates” make it quite clear that they can advocate for themselves, but not those who are incapable of advocating for themselves, and since the things the “self-advocates” lobby for is not the ABA that the lower functioning folks could benefit from, it is problematic to suggest or imply that they speak on behalf of the community.  They don’t.  They speak for themselves.

    From: https://www.thestar.com/news/gta/2017/10/13/family-seeking-autism-therapy-in-class-launches-human-rights-complaint-against-school-board.html
    <h1 class=” article__headline” data-reactid=”90″>Family battling for son’s right to autism therapy in school launches human rights complaint</h1>

    <p data-reactid=”92″>The family alleges the Dufferin-Peel Catholic District School Board has consistently refused to allow her five-year-old son to receive Applied Behaviour Analysis (ABA) in class.</p>

    An Ontario family has launched a human rights complaint against a school board in an effort to get a popular form of therapy for autistic children provided to their son in class.

    Beth Skrt of Mississauga, Ont., alleges the Dufferin-Peel Catholic District School Board has consistently refused to allow her five-year-old son Jack to receive Applied Behaviour Analysis (ABA) in class.

    She says Jack has been receiving and benefiting from the therapy at an off-site facility he attends multiple days a week. Her son is also supported by education resource workers in class but she argues they are not equipped to provide the same level of therapy.

    Read more: Parents battle for son’s right to autism services in school

    Skrt says her family offered to cover the cost of private ABA professionals to work with her son at school, but she says the board won’t allow it.

    The family has brought the issue before the Human Rights Tribunal of Ontario, seeking the right to provide ABA for Jack in his classroom.

    The lawyer representing the board at the tribunal — which began hearing the case this week — did not indicate what arguments she planned to make, but says Dufferin-Peel supports providing appropriate educational services for all.

    “We are confident that our evidence will demonstrate that we have fulfilled our commitment to students,” Nadya Tymochenko said in a statement.

    But Skrt, who works as an education resource worker for the board, said she believes the system is letting her son down.

    She said her family initially balked at the prospect of a long and costly battle before the tribunal, but said the alternative was compromising Jack’s future.

    “There’s so much potential there,” Skrt said in an interview. “He is verbal. He is able to learn. He reads. He talks. He’s friendly. He tries to play. It doesn’t always work out, but he’s just a really good kid. And I thought to myself, ‘how do I live with myself? How can I just let him fall through the cracks of the system?’”

    ABA is a type of treatment meant to teach autistic children to regulate behaviours that are believed to be socially significant.

    In Jack’s case, such behaviours currently include “finger-spelling in the air,” as well as making clicking or humming sounds when he gets overwhelmed or anxious.

    Although some members of the autistic community have written at length about negative experiences with ABA, saying it hampers their natural way of understanding the world, an opening statement filed with the tribunal on behalf of the Skrt family said Jack’s care team have consistently indicated he would benefit from the approach.

    The statement said Jack began receiving ABA at the age of three, at which time he was not toilet-trained and was highly withdrawn. It said the ABA program he accessed outside school helped him make significant progress and argued the therapy is needed in class to help him fully access his education.

    According to the statement, proper ABA can only be administered by a Registered Behaviour Technician (RBT) working under the supervision of a Board Certified Behaviour Analyst.

    According to the statement filed on behalf of the Skrt family, the Dufferin-Peel board currently has such an analyst on staff and employs education resource workers who interact directly with Jack. But those workers have not received training as RBTs and are not qualified to provide proper ABA, the statement said.

    “The board has suggested it provides Jack with ‘ABA methods.’ With respect, ‘ABA methods’ is not a recognized term. One either provides ABA, or provides something that may loosely resemble ABA,” the statement reads.

    “The science behind it must be understood and it must be performed in a rigorous manner. Without the proper training, the (education resource workers) working with Jack are unable to provide such programming despite their best efforts.”

    Skrt said she and her husband offered to cover the cost of an RBT to accompany Jack to class, but said the request was denied. She said the board gave her many reasons for the rejection, ranging from citing Ministry of Education policy to claims that resource workers were equipped to provide the necessary level of service.

    Nicole Bardikoff, senior researcher at Autism Ontario, said ABA has long been seen as the “gold standard” for behavioural interventions, adding it has been well studied and found to yield positive results.

    “One of the main components you’re looking at with ABA is how to generalize behaviour from different settings,” she said. “Children spend most of their time at school, so it makes so much sense to be able to meet children where they are … to really help with behaviour there.”

    However another group, Canadian Autistics United, does not favour ABA, saying it supports therapies that “work with unique autistic strengths, instead of ones that fight against them and force normalization.”

    “ABA may make us look normal, but that is an illusion,” group spokeswoman Vivian Ly said in an email to The Canadian Press. “The outward appearance of improvement comes with internal, emotional harm and increased anxiety.”

    The Ontario government has a policy requiring school boards to offer special education accommodations for children with autism, which Bardikoff said can include ABA.

    But Bardikoff said the ABA field is not currently regulated, and even terms such as “board certified behaviour analyst” are misnomers as there is currently neither a board nor a certification in place.

    That is likely to change in the coming months, according to a new provincial program set to be implemented by next spring. Minister of Children and Youth Services Michael Coteau has announced that ABA practitioners will be regulated in the future, though few details are currently available.

    #22843

    Andrew Kavchak
    Participant

    Hi Folks,

    Some more debate and reference to behavioural therapy, the costs, the wait times, etc.

    From the Senate Debates, Thursday, October 5, 2017:
    <h2 id=”63″>Autism Families in Crisis</h2>

    <h3 id=”64″>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. Mobina S. B. Jaffer (Acting Leader of the Independent Senate Liberals): </b>Honourable senators, I rise today to speak on Senator Munson’s Inquiry No. 31.

    May I have permission to sit and speak, please?

    <b>The Hon. the Speaker: </b>Yes, Senator Jaffer.

    <b>Senator Jaffer: </b>Thank you.

    I wish to act on the Standing Senate Committee on Social Affairs, Science and Technology’s report named<i> Pay now or Pay Later: Autism Families in Crisis</i>.

    Before beginning, I would like to thank Senator Munson for his tireless work to ensure that people with autism and their families get the support they need.

    <b>Hon. Senators: </b>Hear, hear!

    <b>Senator Jaffer: </b>He has, for a very long time, been truly a champion of people with autism. The subtitle of the report this inquiry deals with, <i>Autism Families in Crisis</i>, perfectly describes the situation for many families of the 1 in 68 Canadians, or approximately 530,000 Canadians, who are affected by an autism spectrum disorder.

    Families are often forced to wait for unacceptable periods of time to get their children the services they need. For example, speech therapy and behavioural therapy can have wait lists that go as long as several years.

    Given how children need this therapy during their youngest years, while they are still in their developmental period, this often means that the therapy is far less effective by the time it is received.

    Other families struggle to pay the cost of supporting their child with autism spectrum disorders. In many cases, publicly funded health insurance only covers a fraction of the support that a child may need, meaning that parents are forced to pay the rest out of their own pockets.

    Given that therapy for autism spectrum disorders can cost as much as $60,000 every year, this often means that parents must make great sacrifices to provide their children with the support that they need to learn and succeed.

    Finally, many families are struggling to deal with the stigma and silence that still surrounds autism spectrum disorders, which causes many cases to go undiagnosed through those crucial first years of the developmental period.

    Recognizing how serious this issue was for Canadians, the Standing Senate Committee on Social Affairs, Science and Technology conducted a study to find a solution for this issue 10 years ago, with Senator Eggleton as the committee chair and with Senator Munson, Senator Mercer and Senator Watt also participating.

    This study resulted in the report that this inquiry presented to the government entitled<i> Pay now or Pay Later: Autism Families in Crisis</i>.

    While the study covered a large variety of areas related to autism in Canada, there was one clear message sent by this report: Canada needs a national strategy on autism. As Senator Munson mentioned yesterday, or the day before, there have been some improvements since the report’s publication.

    There is now an autism spectrum disorder surveillance system that keeps track of data around the country regarding autism. Our government also spends $8 million every year on research and funding employment programs for people with autism spectrum disorders. Outside of the government, awareness about autism has also reached unprecedented levels, meaning that more voices than ever before have joined the discussion.

    (1520)

    However, as Senator Munson also said yesterday, there is still a lot of work to be done. If we truly wish to help the families that are struggling to provide their children with the supports that they need help their children succeed, we need to specifically create federal targets and programs that will accomplish that very goal. We need a national strategy on autism spectrum disorder.

    If we wait, countless Canadians will continue to suffer. I have heard many stories from families who have had to make great sacrifices to support their children with autism. I’ve heard from parents who mortgage their homes to cover the massive costs of therapy. I’ve heard from parents whose physical and mental health deteriorate as they are forced to deal with the very challenging task of caring for a child with autism without any form of support. I have heard heartbreaking stories of children who face horrible bullying because they suffer from autism spectrum disorder. Finally, I have heard pleas from parents who feel helpless as their children face challenges throughout their youth and are unable to cope without the supports they need.

    Honourable senators, this month is National Autism Awareness Month. This month I urge you all to support this inquiry and to urge our federal government to create a national autism strategy. Families across Canada with children suffering from autism spectrum disorder are calling for our government to show national leadership on this issue.

    Honourable senators, if there was any group of children that needed our support, it is this group of children; children who suffer with autism.

    Let us add our voices to this message. Thank you.

    (On motion of Senator Omidvar, for Senator McPhedran, debate adjourned.)

    #22842

    Andrew Kavchak
    Participant

    Hi Folks,

    Here’s some news from Ottawa…. As October is apparently “Autism Awareness Month” (as opposed to “Autism Awareness Day” which is in April), the Canadian Senate has launched an “Autism Awareness Campaign”.

    https://sencanada.ca/en/sencaplus/news/senate-launches-autism-awareness-campaign/

    The website says:

    “October is Autism Awareness Month in Canada and on October 3 — the Senate’s first session of the month — senators re-ignited an appeal for a National Autism Strategy, which was a key recommendation in the Senate’s report on autism released 10 years ago. A great deal of progress has been made since the report was released, but a national strategy has not been implemented.

    On October 3, Senator Jim Munson introduced an ‘inquiry’ in the Senate Chamber and was the first to speak in support of it.

    An inquiry is a type of debate allowing a senator to call attention to a particular issue of interest to Canadians. This debate can continue as long as there is a senator who wishes to speak to the issue.

    Throughout October, when the Senate is in session, senators will speak in support of the inquiry.”

    I wonder what the “great deal of progress” is that was referred to above.  Furthermore, a special event will take place on October 25…

    “The Senate is also planning a major Autism Awareness Day on Wednesday, October 25, 2017. The event will be held on Parliament Hill and will include a Facebook Live roundtable and a resource fair where visitors can learn more about autism. The Senate will be partnering with the Canadian Autism Spectrum Disorder Alliance (CASDA) and numerous other organizations to offer visitors to the resource fair a complete picture of autism, from the point of view of families, researchers, therapists and people living with the brain disorder.”

    It is clear that in order for policy and law makers to address a problem, they have to be aware of what the problem is in the first place. Thus, raising awareness is an important first step in any sort of campaign for progress that is likely to have some chances of success.  But as I’ve already mentioned in a video that I posted a while ago on YouTube (link below), we’ve been doing this “awareness raising” for a long, long time.  The time for policy and law makers to take the next step of meaningful action, and doing something, is long overdue.  Instead of being a “means to an end”, raising awareness appears to have become the “end” in itself for many politicians.  This is particularly well demonstrated by so many of Mike Lake’s speeches on autism awareness day which tend not mention anything about autism policy gaps and what needs to be done.

    There may be a number of speeches that are given in the Senate this month, and I suspect there may be a few around the time of the roundtable and “resource fair” that are scheduled for October 25.  However, Senator Munson gave the first of the speeches on Tuesday, October 3, which I previously posted on this discussion board.

    While Senator Munson is a key ally and champion for our cause in the Senate, I found his speech somewhat muddled.  It did not seem to clearly identify any specific problem or suggest what the government should do. There was a reference to a “fragmented approach” (across the country) and the need for (federal) leadership…but leadership for what?  The key was in the sentence where he referred to the need for a “National Autism Strategy” that would “legislative framework for research, early individual and family intervention and family assistance across the lifespan…” That sound good. But wait…

    This seems to me to be the first time I’ve come across Senator Munson calling for a “legislative” anything on the autism file.  I don’t recall the Senate report from 2007 calling for a legislative amendment to the Canada Health Act or any other Act.  I just did an electronic search on the 36 page long report for the word “legislation” and it does not come up once.  So is this new, or an accidental slip?  Is the Senator calling for new legislation or amendments to existing legislation?  If so, which ones?  Why did he not flesh this out? This seems pretty important and significant.  Moreover, why does he not have the Bills he has in mind drafted and tabled? They may not pass, but they will surely get the Government thinking.  Is he waiting for condition precedent to happen first? What is it? I know he was responsible for the Act that created the Autism Awareness Day in Canada thing, but about the issues he himself raised above, I mean.

    The Senator is calling for a legislative framework for, among other things, “early individual and family intervention”…I am not sure what the “family intervention” part is that he is referring to, but I would have preferred a simple reference to early intervention, consisting of evidence-based ABA treatment under Medicare from coast to coast, for those Canadians who are diagnosed with autism and who could benefit from from it.  When I first met Senator Munson in the summer of 2004, the issue I tried to bring to his attention was that ABA was the only evidence-based treatment for autism and that it was not available across Canada under Medicare.  Here we are, 13 years later, and the words “ABA”, “Medicare”, etc. don’t appear to be word/issues worth mentioning directly in an awareness speech.

    Again I feel a sense of things are not quite as well understood or expressed as I would prefer, but that one has to rejoice and find satisfaction in what was said, as opposed to what could have been said, because it is nonetheless progress, right?  But why was the Liberal Party of Canada resolution that was adopted last year at the LPC convention not mentioned? Why was there no encouragement for the LPC (which now forms the government) to put words into action and move on the implementation of its own resolution? How about discussing the recently-negotiated “health accords” with the provinces and why autism treatment funding could not have been included (or “piggy-backed”) with those agreements or any soon-to-be-negotiated ones?

    Yes, the Senator mentioned that leadership includes “…finding shared funding mechanisms together…” but don’t we already have many existing funding “mechanisms” and precedents? Or is he now less interested in pursuing the negotiated approach because of a possible new emphasis on the “legislative” way of getting things done (I doubt it, but I’m puzzled by his reference to “legislative”)?

    I suspect that is it really a matter of a lack of political will that is preventing meaningful federal action on the autism file from happening.

    Here is a link to a video about “Autism Awareness and Government [in]Action”

     

     

     

    #22840

    Andrew Kavchak
    Participant

    Hi Folks,

    From the Senate Debates (Hansard) for Tuesday, October 3, 2017:
    <h1 id=”52″>ORDERS OF THE DAY</h1>
    <h2 id=”53″>Autism Families in Crisis</h2>

    <h3 id=”54″>Tenth Anniversary of Senate Report—Inquiry—Debate Adjourned</h3>

    <b>Hon. Jim Munson</b> rose pursuant to notice of September 27, 2017:

    That he will call the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.

    He said: Honourable senators, this is Autism Awareness Month in this country. For us in the Senate, the journey along the autism road began a little over a decade ago. It is a journey that, in many ways, has just begun. It is immense in its complexity. It is emotionally charged. It is critically important.

    The autism journey leads to us face hard questions about the social contract we Canadians make with one another and with our governments, and how we take care of one another. We know that autism affects 1 in 68 of our children. That means you’re talking about a son, daughter, grandson, granddaughter, neighbour or friend down the street. How many times over the last decade have I met someone who has come up to me and said, “I am so glad that you’re working on this issue in the Senate, because I have a friend who has a friend whose child has autism.” If you are not directly affected, someone right next door to you is touched by autism. You have read or watched stories and documentaries about autism, its complexity and the challenges it presents for families who deal with it alone more often than not.

    We have come a long way since the report <i>Pay Now Pay Later – Autism Families in Crisis</i> that was tabled in the Senate in March 2007. Honourable senators, to put it bluntly, we haven’t come far enough. That is why we as senators in our collective voice this month are saying to the federal government today in 2017, “It is time to show leadership — real leadership — not a fragmented approach. You can do it.”

    The motion reads that I will call the attention of the Senate to this, the tenth anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>, and ask that colleagues build on the progress made during the past decade and unanimously support the creation of a National Autism Strategy. Such a strategy would provide a legislative framework for research, early individual and family intervention and family assistance across the lifespan for those diagnosed with an autism spectrum disorder – a brain condition now affecting 1 in 68 Canadians.

    (1610)

    Honourable senators, 10 years ago, we spoke in a unified, collective voice about autism families in crisis and what should happen. We had hearings. We listened to experts, and most importantly, we listened to families and self-advocates. In fact, it was one of our witnesses, a few may remember here, Jason Olford of Fredericton, himself on the spectrum, who gave the report its title.

    Jason told us:

    . . . if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

    We called our report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.

    Honourable senators, later has arrived, and we are paying for it. Families are still in crisis. Autism issues are not only childhood issues. They are lifespan issues. It is a crisis at every phase of an autistic person’s life. One in 68 have some form of autism; think about it. ASD is the most common neurodevelopmental disorder diagnosed among children in Canada today. Autism is the fastest growing and most commonly diagnosed neurological disorder in Canada.

    Autism occurs in all racial, ethnic and socio-economic groups. Autism is a lifelong spectrum disorder. We know that early intervention is critical to a child’s chances of reversing some of the effects of autism. To add to the complexity, co-occurring mental health conditions such as anxiety and depression are common in individuals with ASD. The average extra cost of raising an autistic child in Canada is estimated at $60,000 a year.

    It is estimated that 80 to 85 per cent of adults with autism are unemployed or underemployed, meaning the great majority live below the poverty line. People with autism are seven times more likely than the general population to come into contact with the law.

    Honourable senators, the number of Canadian families struggling and dealing with this situation is unacceptable. Imagine a child who was eight years old a decade ago when we had our report. He or she is now 18. Gone are whatever services that child received during childhood and early adolescence. The child is now an adult. Precious time has been lost. Families are in financial paralysis. They are exhausted physically and mentally. They are alone. They are beside themselves as to what to do next.

    Honourable senators, there is a crisis. More and more children are being diagnosed in all parts of our country. One autistic child’s promising future in Toronto is one autistic child’s hopeless future in another province. Individuals with ASD fall into a spectrum, and their conditions vary. For some, the limitations are extraordinary. For others, there are limitless possibilities.

    Since 2007, when<i> Pay Now Pay Later: Autism Families in Crisis</i> was tabled, governments have partially listened. The Conservative federal government pursued a number of initiatives that have become key components of what could become a national strategy, and upon which we can build. For instance, the Public Health Agency of Canada is establishing a National ASD Surveillance System and working with provinces and territories to collect and track reliable data around prevalence, compare patterns and begin to report on their findings by 2018. Through the Canadian Institutes of Health Research, the federal government invests $8 million annually to research related to ASD. The Opportunities Fund for Persons with Disabilities has led to the creation of such employment programs as Ready, Willing and Able.

    There have been changes, thanks to Minister Flaherty at the time, to the disability tax benefits. We also know that the Minister of Sport and Persons with Disabilities is developing new federal accessibility legislation.

    Public awareness of autism has increased exponentially. People are understanding more about autism and neurodiversity, and its diverse manifestations and potential. As science and research demystify the potential of brain plasticity and the potential to reverse some of the effects of autism, as professionals develop evidence-based approaches and therapies and social policies, we are beginning to see the transformational power of combined research and practice on the hopes and potential of individuals to lead integrated and more productive lives in a more tolerant society.

    Great things are happening in isolated places. Great things need to be happen everywhere in Canada. Yet, none of this is enough. If you have a lower income, if you live away from urban centres, if you live in the North, if you live in indigenous communities, you cannot dream of a future full of hope. Services and assistance to individuals and to families during early childhood, during school age, in later adolescence, as young adults, are not there. You are alone.

    One of the major impacts of<i> Pay Now Pay Later – Autism Families in Crisis</i> was the creation of CASDA, the Canadian Autism Spectrum Disorder Alliance. CASDA became the voice of all those involved in finding answers and solutions: families, self-advocates, scientists and researchers, professional services specialists, educators, advocacy groups. CASDA has invested in a number of evidence-based initiatives to gather data. CASDA, in fact, completed this amazing survey in 2015 which canvassed input from almost 5,000 Canadians.

    In 2017, CASDA completed the Canadian Autism Partnership Project, which was informed and vetted by over 5,000 Canadians, including input from 3,650 parents and individuals with ASD. Drawing upon the extensive data derived from these projects, CASDA and the federal government are now armed with current national information that can inspire a thoughtful and evidence-based national ASD strategy. Together, the federal and provincial governments, along with the leaders within the autism sector across the country, can address the barriers that diminish the opportunities for fully engaged lives by Canadians with ASD based on solid information.

    When the present government came to power two years ago, exciting ideas and language began to be heard and understood in many areas of public policy. The ideas of fairness, inclusion, innovation and collaboration across multi-sector issues began to speak to the notion of what kind of society we Canadians want to be. It was exciting, and it continues to be exciting in order to address Canada’s biggest challenges.

    The minister was just here; I wish he was here for an hour, because I had a lot more questions about this issue.

    In his budget, he said:

    We simply cannot claim success as a country unless everyone has a real and fair chance at success. Health and wellness, safety and security, inclusion and opportunity go hand in hand. Making sure that all Canadians can achieve their full potential is — and will continue to be — one of the Government’s top priorities.

    Did you notice what those words were? He said “all Canadians.”

    Honourable senators, a national ASD strategy is easily aligned with the priorities of the government. The current budget — think about it — could theoretically provide supports for Canadians with ASD. Yet over and over again, history has shown that unless goals, targets and programs are specifically identified as ASD-focused, those Canadians will not be included in the actions coming out of new initiatives.

    Honourable senators, these statements come from the March budget. They set the tone and have potential to guide the creation of an integrated ASD road map for Canada. The provinces and territories want it, the autism community wants it. Canada needs it.

    When there is a group of Canadians that experience an 80 per cent unemployment rate, that group deserves to get attention and action. When there is a group of Canadians experiencing a 50 per cent rate of mental health challenges, that group deserves to get attention and action.

    **When indigenous communities identify that their participation in ASD-related services is blocked by systemic racism and social isolation, that issue requires our attention and action. We have a government that speaks of fairness, inclusion and collaboration. Honourable senators, as we speak during this month of October, October being Autism Awareness Month, let’s use our influence to make sure Canadians with ASD are in the picture.

    (1620)

    Finally, what does federal leadership mean? It means being innovative and creating a model of collaboration with others; a common road map. It means working with provincial partners to create new integrated pathways and solutions across multiple sectors. It means finding shared funding mechanisms together; autism doesn’t have any borders, honourable senators. It means providing financial support for critical life-changing therapy. It means sharing knowledge and standards.

    Honourable senators, there are two contrasting stories of autism in my personal journey. In my world, kids with autism are able to use their extraordinary talents in different creative ways to contribute to society. Think of this picture: My friends at Spectrum Productions in Montreal bring together young autistic adults in a workshop setting to create wonderful animated films and other videos. They have become successful enough to be hired to create corporate films. Some are being approached by animation studios. They are leading creative, productive lives.

    Now let’s look at the scene in rural Ontario, where I was in meetings not that long ago with a group in the basement of a church on a Sunday night. There was snow and it was a miserable night. People were pouring out their emotions about the world of living in inclusion and autism. Imagine a mother in this country running scared down a country road, while her normally loving son, who has autism, is having an angry outburst. She is not running toward him, but away from him for her own protection. The normal instinct is to call the police and the right instinct is for all of us to step in and help. We must be there for her, and her son.

    In closing, honourable senators, I’ve been passionate about this subject for some time, I know that other senators will be speaking and I’m full of gratitude for that. The moving words of wisdom of our new Governor General, Julie Payette, whom we sat and watched here yesterday in this chamber, are an inspiration, aren’t they?

    <b>The Hon. the Speaker: </b>Senator Munson, your time has expired. Do you need more time?

    <b>Senator Munson: </b>Two more minutes.

    <b>The Hon. the Speaker: </b>Is leave granted honourable senators?

    <b>Hon. Senators: </b>Agreed.

    <b>Senator Munson: </b>We all sat here and watched her. I couldn’t believe the way she was speaking. Believe it or not, after 14 years I sometimes get nervous standing up amongst you and having a conversation. I don’t know why, but I guess when you get passionate and emotional about something that’s what happens. But you watched her stand where His Honour’s chair is and speak to Canadians with her words. They are words worth repeating. She said:

    I’m a true believer in the strength of teamwork, in the power of dreams, and in the absolute necessity of a support structure.

    . . . anyone can accomplish anything and rise to the challenge as long as they are willing to work with others, to let go of their personal agenda . . . and to do what is right for the common good.

    …it’s our duty to some extent to help improve the lives of people in our community; to diminish the gap in the inequities here and elsewhere. . . . as partners in a collective spirit.

    What positive words to remember in what I consider something incredibly important for me.

    Imagine, honourable senators, the Senate of Canada speaking in one voice in support of the autism community. Imagine, honourable senators: We can do it again in one strong voice by telling the federal government to take up our challenge, show national leadership and be a partner on our journey — a Canadian journey of compassion, of empathy and of doing what is right.

    Thank you, honourable senators.

    (On motion of Senator McPhedran, debate adjourned.)

    #22839

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, it is Tuesday morning and the House of Commons Hansard for yesterday has a mention about autism (copied below), but the Senate debate transcripts are not posted yet, and I believe that there may have been some discussion about autism in the Senate yesterday.

    House of Commons, Tuesday, October 3, 2017

    Autism

    Mr. Speaker, autism is the fastest growing and most commonly diagnosed disorder affecting children and adults in Canada. I want to thank those who work tirelessly to enrich the lives of people touched by autism. Specifically in my riding, there is Autism Ontario, York Region Chapter, and Kerry’s Place. Organizations like these are invaluable.

        However, just as invaluable are those researching to improve the lives of Canadians on the autism spectrum. Kayley Ting, a 17-year-old from my riding, presented her autism research project at the Prime Minister’s Science Fair. Kayley recognized that a challenge for those with autism is coping with sensory overload, so she researched a solution, a wearable device that identifies the causes of sensory overload, to help prevent future occurrences.
        Kayley’s project will strengthen the independence of those living with autism. Well done, Kayley and all of our young innovators, who have the courage to dream of the possibilities and the creativity and hard work to get it done.
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