This topic contains 1,765 replies, has 143 voices, and was last updated by  Andrew Kavchak 13 hours 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 - 21 through 30 (of 1,765 total)
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  • #22798

    Andrew Kavchak
    Participant

    Hi Folks,

    Every once in a while there is an article in the media dealing with autism that just leaves you speechless and shaking your head.  One of the frequent themes of these kinds of articles is how governments treat individuals, families, and the collective community.

    You may recall that in Quebec, for the past two years or so the provincial government came under a lot of heat and pressure from the autism community because of a substandard system.  The government repeatedly stated that it was being reviewed with the intent of announcing a major program overhaul, etc.  The announcement of the overhaul and new program kept being delayed.  That is often the sign that there are some clear problems behind closed doors.  Well, they announced their program a while ago.  Have the complaints from the community ceased?  Nope.

    The latest story in a CTV report is quite revealing. Check out the story (copied) below (link also provided).

    Consider these things:

    1. to cover the costs of treatment, the parent has had to make use of “private donor and charity”.  In Canada in 2017!
    2. Application for supplemental funding to the provincial government was turned down. Hers is not alone! Of the 3,400 applications that have been evaluated to date, the government has turned down 54%.
    3. The government says his impairement is “not severe enough to warrant the extra funding”.
    4. Parents “get stuck in the paperwork”.
    5. Very few ask for a review and most “simply give up”.
    6. We can all relax and rest assured, knowing that the government agency “of how difficult it can be for parents…”.
    7. The child’s school, psychiatrist and therapists describe the situation as “urgent”.
    8. ABA helped the child, but once he started school he no longer qualifed for ABA, and went into a “tailspin”.
    9. Parent is terrified of child losing more than what he has now and they go back to square one.

    This is such a disheatening story that you really have to read it to believe it. And yet, who in our community, can say that they never heard of such things before?  Government program after government program and it is the same old bureaucratic obstacles, blockage, excuses, red tape, insenstivity, hostility, and lies (especially the one about government knowing how difficult things are for parents – you have to live it to fully appreciate it).

    Where’s someone like MLK when you need him or her?  I have a dream, that someday, people going to hospitals will not be subject to a decision on whether their illness will be treated based on whether they are fortunate enough to have an illness on a list of approved illnesses, but that all kids with illnesses, including autism, will be treated on the basis they they need treatment, they are citizens, their parents paid taxes, and the equality provision in the Constitution actually means what it says. Oh Lord, I have a dream, that someday, articles like the one below will be relegated to the trash heap of history. Yes, I have a dream.

    http://www.cbc.ca/news/canada/montreal/lachute-mother-fights-back-after-quebec-turns-down-stipend-for-autistic-son-1.4266856

    <h1 class=”story-title”>Lachute mother fights back after Quebec turns down stipend for autistic son</h1>

    <h3 class=”story-deck”>Tina Chapman is 1 of 100s of parents denied extra funding to help care for their severely disabled children</h3>
    <p class=”small lighttext”>By Leah Hendry, CBC News Posted: Sep 05, 2017 5:00 AM ET</p>
    Tina Chapman’s sole goal this summer was getting her son Blake back on track after his difficult year in kindergarten.

    It’s meant early morning treks every week to Montreal from their home in Lachute, Que., 85 kilometres away, so the six-year-old can get therapy for his autism.

    They also go to Laval once a month, where he receives occupational therapy for dyspraxia, a developmental disorder that affects his co-ordination.

    For now, a private donor and a charity cover those costs, but Chapman says more money is needed to get Blake all the help he needs.

    She thought she’d found the answer last year, when the Quebec government announced it would offer parents a special supplement to help care for a child with severe disabilities or a serious illness.

    Chapman planned on using the money — about $11,000 a year — to help pay for additional therapy.

    Her application was turned down.

    Astonished, Chapman appealed that decision. To her dismay, it was rejected again.

    Chapman is one of many parents who had their application rejected.

    Since the program started, Rétraite Québec has received nearly 3,900 applications.

    Of the nearly 3,400 applications evaluated so far, 54 per cent have been rejected.

    In a letter explaining its decision, Retraite Québec, the ministry responsible for disability payments, said while it doesn’t deny Blake has a disability, it doesn’t consider his impairment severe enough to warrant the extra funding.

    Chapman was shocked.

    In addition to autism and dyspraxia, Blake has a severe speech delay and a sensory processing disorder, and he suffers from anxiety.

    Chapman is one of many parents who had their application rejected.

    Since the program started, Rétraite Québec has received nearly 3,900 applications.

    Of the nearly 3,400 applications evaluated so far, 54 per cent have been rejected.

    In a letter explaining its decision, Retraite Québec, the ministry responsible for disability payments, said while it doesn’t deny Blake has a disability, it doesn’t consider his impairment severe enough to warrant the extra funding.

    Chapman was shocked.

    In addition to autism and dyspraxia, Blake has a severe speech delay and a sensory processing disorder, and he suffers from anxiety.

    The Quebec government first announced the supplement for disabled children with exceptional care needs in spring 2016.

    With it, came a projected budget of $10 million a year.

    To be eligible, a child must already be getting the basic supplement for disabled children, which gives parents $190 a month.

    A team of physicians evaluates each application, but the assessment isn’t based solely on a diagnosis of a physical or mental impairment.

    To qualify, the child’s ability to feed, wash, move, communicate or go to school must be severely limited or absent.

    Electra Dalamagas, who is in charge of family intervention at an advocacy group for people with autism, Autisme Montreal, has spoken to many frustrated parents who applied for the supplement.

    “There has to be so many severe limitations on top of the diagnoses, and they have to have the paperwork to support all of this,” said Dalamagas. “A lot of parents got stuck in the paperwork.”

    Few people appeal: to date, only 252 people have asked for their case to be reviewed.

    Chapman is one of just five cases that have gone above Rétraite Québec and appealed to Quebec’s administrative tribunal.

    Dalamagas says many parents simply gave up.

    “You wear people down,” said Dalamagas. “Eventually people give up chasing after reports and trying to make sense of things when you haven’t slept for three nights.”

    “You have to make supper, you have to remember to wash at some point. You’re talking survival mode for a lot of these families.”

    A spokesperson for Rétraite Québec says the agency is aware of how difficult it can be for parents to get access to all the documents requested.

    It now asks for parental consent, so the government can access the child’s health and education records directly. However, of the nearly 500 applications still waiting to be processed, in most cases, Rétraite Québec is still awaiting documents in order to make a decision.

    Chapman says she’s determined to keep fighting for the extra supplement.

    Blake’s school, psychiatrist and therapists all insist that her son needs substantial support in all areas of his life.

    In the letters they wrote to the government on his behalf, they described Blake’s situation as urgent.

    Blake has to repeat kindergarten this year, something Chapman believes could have been avoided if the government had given her the supplement.

    She’s convinced of that because prior to kindergarten, Blake was doing well.

    Before he started school, he received publicly funded therapy called applied behaviour analysis — or ABA — three times a week.

    His mom says ABA helped him learn to speak, communicate and socialize, and he was able to attend two full days of pre-kindergarten a week with few problems.

    But in Quebec, once children with autism start regular school, they no longer qualify for government funding.

    Without the ABA therapy, Blake went into a tailspin.

    Desperate, Chapman went public with Blake’s story last winter.

    A private donor and charity then stepped up to help. This summer, he started making progress again, but Chapman knows she can’t rely on those funds forever.

    She says Blake needs long-term, stable funding that will allow him to get more therapy.

    She’s terrified of what could happen if he loses what he’s getting now.

    “Chances are he’ll lose all these skills again, and I’ll be back at square one,” said Chapman. “Basically I lose him, and I have to watch him go away right before my eyes.”

    She believes continuing the appeal is her only option.

    Late last week, Chapman’s legal aid lawyer told her Retraite Québec has offered to try to reach a settlement with her through mediation.

    She said she’s open to seeing what they have to offer but won’t settle for less than what she believes Blake is entitled to.

    “If I can get this battle won, it could open the door for a lot of other families that were denied,” said Chapman.

    #22790

    Andrew Kavchak
    Participant

    Hi Folks,

    Prime Minister Trudeau shuffled his cabinet today.  As with the births and deaths notices in the newspapers, we have some “ins and outs”. It seems to me that those of relevance to our community are:

    <b>Jane Philpott</b>, currently Minister of Health, becomes Minister of Indigenous Services.

    <b>Kent Hehr</b>, currently Minister of Veterans Affairs and Associate Minister of National Defence, becomes Minister of Sport and Persons with Disabilities.

    <b>Carla Qualtrough</b>, currently Minister of Sport and Persons with Disabilities, becomes Minister of Public Services and Procurement.

    <b>Ginette Petitpas Taylor</b>, currently Parliamentary Secretary to the Minister of Finance, becomes Minister of Health.

    <b>Seamus O’Regan</b>, becomes Minister of Veterans Affairs and Associate Minister of National Defence.

    Although Jane Philpott was a doctor, as far as I know, she did NOTHING in her capacity as federal Minister of Health to assist the autism community.  She does deserve credit for ignoring the CASDA Canadian Autism Partnership (CAP) project, but if she really understood the challenges of the community, she would have offered something concrete as an alternative.  Instead, she negotiated health accords and funding with each province, with funding specifically tagged for things like mental health and homecare, but she ignored autism completely.  She never replied to any of my correspondence (and I used to write Ministerial correspondence for many issues of much lesser importance). Thus, in my books, on a scale of 1 to 10, she ranks about a “0” or “-1”.   Although I’m happy to see her leave the health portfolio, the problem for our community is that we now have to try to educate the new Minister (and her staff) and get autism on her agenda before Trudeau gives her a “mandate letter” with no reference to autism at all (there is a mandate letter linked to the press release, but it has no date on it, so it is not clear if it the old one from 2015, or a new one – either way, the word “autism” does not appear in it).

    The new Minister of Health is…..Ginette Petitpas Taylor.  I have never heard of her before. I just hope her name is not indicative of her personality. We need some “grandpas” on this file and not the “petit” variety.  Here is the background bio that was posted:

    The Honourable Ginette Petitpas Taylor

    The Honourable Ginette Petitpas Taylor was elected in October 2015 as a Member of Parliament in the riding of MonctonRiverviewDieppe. Ms. Petitpas Taylor serves as the Chair of the Subcommittee on Private Members’ Business of the Standing Committee on Procedure and House Affairs, and is a Member of the Subcommittee on Private Members’ Business of the Standing Committee on Procedure and House Affairs, and of the Standing Committee on Procedure and House Affairs. She also served as the Deputy Government Whip from December 2015 to January 2017. In January 2017, she was named Parliamentary Secretary to the Minister of Finance.

    Ms. Petitpas Taylor has spent her entire life advocating for a fair and just society for all. She was the former Chair of the New Brunswick Advisory Council on the Status of Women and a member of the Coalition for Pay Equity. She has volunteered with several community organizations, both provincially and locally, including the Coalition Against Abuse in Relationships and the Canadian Mental Health Association’s Suicide Prevention Committee in Moncton.

    Ms. Petitpas Taylor was the Codiac RCMP Victim Services Coordinator, during which time she provided crisis counselling, domestic violence intervention, and domestic violence risk assessment to victims of crime. She also served on the City of Moncton’s Public Safety Advisory Committee, which was commissioned by Moncton City Council in 1996 to proactively influence the community through crime prevention promotion and to help Council respond to problematic issues as they arise.

    Ms. Petitpas Taylor grew up in Dieppe, New Brunswick, and graduated from l’Université de Moncton with a Bachelor’s degree in social work.”

    OK, so it does not look like her background included any experience with autism that is worth mentioning.  Too bad.  However, I suspect that the CASDA and CAP proponents may see this as a new opportunity for lobbying for their (previously rejected) plan.  I don’t think it should surprise anyone if Mike Lake took to twitter and his international petition webpage to again try to mount a campaign to flood the new Minister’s email inbox with tweets or whatever those messages are called.

    Carla Qualtrough is out as Minister for Persons with Disabilities.  I know, I know, you are probably asking: “we have a Minister for disabilities?  Since when?  And who’s she?”  I hear you.  I wrote to her office as well and asked for a meeting.  No response.  I don’t know who she is or what she has done.  Thus, on a scale of 1 to 10, I don’t think she even registered.

    So who’s the new Minister for disabilities? According to the press release…

    “Kent Hehr represented the residents of downtown Calgary in the Legislative Assembly of Alberta for more than seven years.

    Born and raised in Calgary, Kent’s life drastically changed when, just shy of his twenty-second birthday, while riding in a friend’s car, he was hit by a drive-by shooter leaving him paralyzed. The life-altering injury did not quash his ambitions—while still re-learning to use his fingers, Kent studied at the University of Calgary, earning his Bachelor of Canadian Studies, followed by his Bachelor of Law in 2001.

    Kent has practised law at the prestigious national firm, Fraser Milner Casgrain, and became an active community leader, working with the United Way and heading the Alberta branch of the Canadian Paraplegic Association. In 2008, Kent was named one of the “20 Most Compelling Calgarians to Watch” by the Calgary Herald. Later that year, he won the race to represent Calgary-Buffalo in the Legislative Assembly of Alberta, a seat he successfully defended in 2012. As shadow minister of justice, finance, education and other portfolios, Kent held the government to account while taking an active role in creating legislation for the future of Calgary and Alberta.”

    Obviously this gentleman is not your average guy. I have a lot of respect for someone faced with the physical challenges that he has, who is still prepared to throw his hat into the political arena and seek public office.  The political arena can be vicious sometimes, and it takes a tough person to withstand it and succeed.  I felt the same way about Steven Fletcher when he was first elected. I remember meeting Mr. Fletcher and he listened to my concerns about autism. He was in opposition at the time (of course), and once he was in the Government side (and even in Cabinet), he simply dropped the file.  I saw him once and he explained something to me.  Although I raised the alarm with him about the crisis in the autism community, he told me that he went back to Manitoba and visited the St. Amant Centre for autism. He told me that they said everything was fine and there was no crisis that required any federal action.  I don’t know if that it indeed what they told him since I was not at their meeting, but if true, then that is just another example of our community shooting itself in the foot.  I hope that Mr. Hehr will take some action on the autism file that will give us reason to celebrate.

    Finally, I would like to mention Seamus O’Regan. He is the new Minister of Veterans Affairs. Some of you may remember him from his days as a co-host on Canada A.M. on CTV years ago, and his post-election confession about having an alcohol problem and entering a rehabilitation program in a “wellness centre” for a while.

    http://www.cbc.ca/news/canada/newfoundland-labrador/mp-seamus-o-regan-alcohol-treatment-1.3408277

    Now that he got that all cleared up, he will be sitting at the Cabinet table.  He may be a potential ally.  When I was protesting on Parliament Hill last year I bumped into him and he seemed enthusiastic and said “Yes!  That’s definitely something we have to do something about!”.  However, so far, while not in rehab, as far as I can tell, all he has done is show up at the annual “Autism on the Hill” rallies (around the time of the annual “autism awareness day”) and give a short speech.  The two times that I heard him speak at the rallies I heard him mention that he has a cousin who has a child with autism. Thus, it would appear that he has some exposure to the disorder and the public policy failures from his extended family’s experience in Newfoundland (if he was paying attention – I say that because I know a number of cousins who don’t).  This could be good news for us. Who know? He could potentially be a “champion” of our cause at the cabinet table.  It is also noteworthy that he also voted on May 30 to reject Mike Lake’s motion to support the CAP project.  In my books, he deserves some credit for that, but it may evaporate if he does not propose something else that is more concrete than an annual awareness speech.

    On a completely separate matter, do you recall that the Liberal Party of Canada held a policy convention in Winnipeg last year and voted to adopt a resolution calling for the inclusion of autism treatment in Medicare and for the feds to negotiate a funding formula with the provinces?  Well, my understanding is that the Liberal Party (not the Government) has created a “working group” to start looking into the resolution and develop some sort of a report for the Government of Canada on how the resolution could be implemented.  I sincerely wish them good luck.  I am concerned, however, that the bone may be too big to chew on, and that without a specific “Mandate Letter” or something of that nature from the Prime Minister, the working group may look for other easier  type of potential programs (e.g., providing some direct financial assistance to families to help pay for therapist training, or something like that, etc.) which may give the impression that the feds are “doing something” that is a “solution”, but which is in reality a “band-aid” type of temporary program which would not address, once and for all, the issue in the resolution, i.e., getting autism treatment covered by Medicare.  We’ll have to see how this pans out, but if they proceed to engage in “consultations” with the community, I hope they get more relevant, meaningful and helpful feedback than Steven Fletcher got.

    Cheers from Ottawa

    Andrew

     

    #22784

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, here we go….it was just a matter of time and it finally happened.  As you know, the federal government has been negotiating and signing “health accords” with the provinces.  The agreements involve the transfer of lots of federal money to the provinces, and the agreements specify some of the health-related services that the funds are tagged for.

    But just never autism treatment.

    The feds signed agreements with most of the provinces a while ago, but there was one holdout…Manitoba. And today, the CBC is reporting that the feds have done it!  They negotiated an agreement with Manitoba.  The CBC report is here:

    http://www.cbc.ca/news/canada/manitoba/funding-health-manitoba-1.4255391

    Notice that the deal includes monies “targeted for home care, mental health and addictions, which were identified by all provinces as priorities that needed extra funding.”

    But just not autism treatment.

    Furthermore, millions of dollars will be spent that “Manitoba has earmarked to specifically battle opioid addiction and chronic kidney disease.”

    But just not autism treatment.

    The rest of the article is about the debate as to whether or not the federal Minister of Health can gloat about having achieved a “pan Canadian” solution when in fact there are differences in the agreements that were separately negotiated with each province.

    What will it take for the federal and provincial governments to realize that these “pan” something negotiations should also include money transfers for autism treatment under Medicare? Will the Autism Society speak up?  Will CASDA speak up? Will their failed CAP MP champion Mike Lake speak up?  Don’t hold your breath!

    Back in 2004 when Paul Martin negotiated a 10 year deal with the provinces involving tens of billions of dollars, a small group of autism parents, including me, protested in front of the conference centre in Ottawa. We were saddened that autism was left out of the accord. This time we were hoping the feds would wake up and take autism treatment into account and factor it in to their deals.  Well, once again our community was left out.  Shame!

    #22743

    Andrew Kavchak
    Participant

    Hi Folks,

    The Autism Canada press release this week must have sent some shock waves through some elements of the autism community that did not expect it, but I’m having a hard time finding any articles in the media or commentary in “social media”.  I applaud Autism Canada’s move to publicly state that they reject CAP and CASDA, along with their rationale.  I was not aware of the financial reporting aspect of the $2 million that was apparently allocated by the previous government to the initial working group mandated with the development of the “business plan”.  I gather that some people who have seen what is apparently available to date about how that money was spent were not satisfied that there was sufficient information about how the money was spent.  Well, well…where is the full disclosure, transparency and accountability?  Who made how much and for what?  Just curious…

    Well, it is that time of the year again for the Governor General to be distributing the “Order of Canada” award to outstanding Canadians who have contributed a lot to the fabric of this country and helped make it a better place.

    I noticed in a Globe and Mail article of yesterday (available at: https://www.theglobeandmail.com/news/national/order-of-canada2017/article35500532/), that another person in the autism community was recognized (see below).   A few years ago the GG also awarded the Executive Director of the Autism Society of Ontario with a similar award.  What gets me is this…..in 2004 I protested over the lunch hour in front of the Supreme Court of Canada building when the Auton case was being heard. When the court hearing broke for lunch, a number of the families came out, and I had a chance to meet some of them. I was humbled by the struggle (several years in the making) and the courage and strength of the group behind this case. I did some research, spoke to a number of people, and then submitted a nomination to the GG for Dr. Sabrina Freeman to be awarded the “Order of Canada”. The file was assigned to a researcher with whom I had several conversations.  They were responsible for filling out that research and ushering the file to the committee for consideration (a committee that includes the Chief Justice of the SCC).  Two years later I was told that the nomination was rejected. The only reason I can remember is that the committee did not consider Dr. Freeman to have “accomplished enough” in her life, or something like that.  However, I was told that Dr. Freeman could be considered for a “Meritorious Service Award”.  So I asked that the nomination be considered for that alternative.  Well, several years later I was told that the application was put “on hold” as the who “awards system” was being reviewed.  Several years later I received a letter asking if I was still interested in having my initial submission and nomination of Dr. Freeman to be considered. Of course, I replied “yes” and asked them to speed things up a bit.  Well, here we are in mid-2017 and I still have no response. I have written on an almost annual, or bi-annual, basis asking for a status update. I have written to the GG and the so-called “Chancellery of Honours”.  The last letter I received was several years ago (in response to my “yes” reply about still being interested), which indicated that they would proceed. However, I have submitted by email two requests in the past three months or so asking for a status update, and have received no response at all. To me, this situation, which is typical of Ottawa (behind-the-high-walls) is absurd.  Thirteen years, and counting, for a “yes” or “no” to an award for the person who has done, in my opinion, more for the autism community than most people realize.  In the meantime, they continue to give the Order of Canada to people in the provincial autism societies, I presume, without any fuss or declaration that they “have not done enough in their lives to deserve it”.

    What conclusion can one possibly come to other than the Order of Canada is an extremely political award.

    Several years ago I wrote a letter which was published in one newspaper in which I stated that it is nice to see the list of people every year who are recognized as being worthy by the GG.  However, it would also be nice to see a list of all those whom the GG (and his committee and staff, etc.) considered “unworthy”.

    One final observation on the list of “winners”….it includes Mary Anne Eberts. She was the counsel for the plaintiffs in the famous Deskin/Wynberg case (representing the “Wynberg” plaintiffs) who sought a declaration that the age-six cut-off from ABA treatment in the Ontario Pre-school Autism Program (as it existed at the time) for kids with autism was age-based discrimination. The families won at the court of first instance (a huge decision by Justice Frances Kiteley in 2005).  However, the government appealed, and the decision was overturned at the Court of Appeal and the SCC refused to hear an appeal (presumably because the issues relating to autism were largely settled by the SCC in 2004 in the Auton case which allowed the governments of this country to ignore the Charter if they wished).  However, the key thing here is that launching a lawsuit againt the state does not preclude one from being rewarded with the award.  So why the indecision in Dr. Freeman’s case?

    From the Globe and Mail….
    <h3 class=”article-subhead”>Joyce Churchill</h3>
    <p class=”selectionShareable”>(Portugal Cove-St. Philip’s, Newfoundland and Labrador)</p>
    <p class=”selectionShareable”>Joyce Churchill’s son, Stephen, was 21 years old when the province of Newfoundland agreed to provide money for an early intervention program for children with autism. It had taken Ms. Churchill and a support group of parents more than a decade to convince the government that investing in their children was worthwhile.</p>
    <p class=”selectionShareable”>“As parents we had to fight really hard to get anything at all for our children,” recalled Ms. Churchill, who would go on to co-found and helm the Autism Society of Newfoundland and Labrador. “In the 1970s, children with autism were at the bottom of the barrel. It was a condition that was not well understood. We signed off that our children had mental retardation in order to get support in the schools.”</p>
    <p class=”selectionShareable”>With the help of other parents, two older daughters and “a good husband and a good father,” Ms. Churchill had managed. But she and other parents also knew early interventions would have made a difference.</p>
    <p class=”selectionShareable”>In 1998, when they finally won support for a pilot program, the group was elated.</p>
    <p class=”selectionShareable”>“We came out of the government office with our arms in the air,” she said.</p>
    <p class=”selectionShareable”>“We had older children then, but we believed and we went to bat for the younger children,” she said. “We knew that if this worked, and we knew that it was going to, we were going to make sure that there will be no taking it away and that’s what happened. The program became part of the fabric of this province.”</p>
    <p class=”selectionShareable”>After the early intervention program, Ms. Churchill and her group turned to building an education and support centre with help from private donor Elaine Dobbin. Memorial University provided the land for a 100-year lease for $1. Now, children and adults with autism can enroll in research trials at the centre. The centre also has a garden-to-café program staffed by participants.</p>
    <p class=”selectionShareable”>Demand for help has grown as a result of the success of her group and others across the country, Ms. Churchill said. “There is an increase in understanding and diagnosis, it’s no longer a mystery what this is.”</p>

    #22741

    Andrew Kavchak
    Participant

    Hi Folks,

    Autism Canada just issued a press release (available on their website)…

    Autism Canada rejects Canadian Autism Partnership Project
    National advocacy organization calls for an actionable plan that provides equitable access to
    evidence-based treatments for all Canadians.
    June 27, 2017 – BOTHWELL, Ontario – Autism Canada has withdrawn its membership in the Canadian
    Autism Spectrum Disorders Alliance (CASDA) and its support of the Canadian Autism Partnership
    Project (CAPP).
    “As presented in its final form, CAPP is not a good plan. Moving forward, we will focus our efforts on
    working with our partners in the autism community and with the federal government to create an
    effective national autism strategy for all Canadians, to ensure equal opportunity and support for
    individuals with autism throughout their lifespan, regardless of where they reside in Canada.” said
    Dermot Cleary, Chair of Autism Canada’s board of directors.
    “Our reasons for our withdrawal of support are threefold; a lack of financial disclosure, lack of
    transparency and lack of concrete, measurable deliverables.”
    “To the best of our knowledge, full disclosure of the CAPP financial documents have yet to be made
    public,” said Cleary. “Based on the financial statements that were provided to us, we don’t see
    justification for the stated fees and costs associated with the project.”
    “In our view and opinion, there are several important gaps in project governance and reporting
    mechanisms that would allow for full transparency of the spending of public funds, and this is clearly
    not in keeping current with best practices.” added Cleary.
    “As the only autism advocacy organization with a national perspective on the issues currently facing
    those with ASD, their families and other stakeholders, Autism Canada believes it is incumbent upon us
    to provide a strong voice for those affected by autism and to make our concerns known to all
    Canadians,” said Cleary.
    “We look forward to working with government to share our expertise, build consensus and help inform
    public health policy as it regards access to evidence-based treatments of autism.”
    “On behalf of our stakeholders, we will act as the catalyst to align and galvanize our provincial and
    territorial partners to ensure a synergized and equitable approach to the provision and delivery of
    evidence-based treatments is available to all Canadians.”
    -30-
    About Autism Canada
    Autism Canada is the only autism advocacy organization with a national perspective on the issues
    currently facing those with ASD, their families and other stakeholders. Together with our provincial and
    territorial counterparts, Autism Canada collaboratively works to share expertise, build consensus and
    help inform public health policy as it regards access to evidence-based treatments of autism. In
    addition to encouraging the sharing of best practices across provincial boundaries, Autism Canada
    actively promotes national dialogue on the most effective strategies for building equitable access to
    funding and services.
    To learn more, please visit http://www.autismcanada.org.
    MEDIA CONTACT:
    Dermot Cleary
    Chair, Autism Canada
    dcleary@autismcanada.org

    #22740

    Andrew Kavchak
    Participant

    Hi Folks,

    The bureaucracy in Ottawa often appears like a huge, faceless, impersonal and anonymous type of antideluvian “idiot’s club for life” hiding behind high walls.  But occasionally they will issue a statement, or letter, that may actually be signed by someone from the bowels of the beast, proving that they are indeed alive.

    I remember about 10 years ago shortly after federal Healh Minister Clement had a press conference announcing that the autism situation was now serious enough that doing nothing was no longer an option, (and revealed that his new plan included the creation on Health Canada’s website of a webpage dedicate to autism), I found out the name of a bureaucrat at the Public Health Agency of Canada (PHAC) who was assigned responsibilities for a unit being mandated with issues around autism.  I then promptly wrote to that person and provided some background and suggestions as to what the community needed. I received no acknowledgment of receipt or reply.  The message was evidently not worthy of such and I presume it was not wanted.

    About seven months ago I wrote to the current Minister of Health, and outlined my concerns with the CAP project business plan that she was given, and made some suggestions about what the autism community really needs on a priority basis (an elaboration of my article in Toronto Star). Many weeks later (I think it was about six or seven), I received an email response from the then “acting” head of the PHAC.  The message did not addres any of the things I wrote about, and instead contained the now familiar talking points about federal financial contributions to research, etc.

    As a person who already spent 25 years in the federal civil service and was repeatedly tasked with drafting such “ministerial correspondence” in various departments, I recognized the style and intent.  Shoo…go away…and don’t bother us with what you think is important because what we’re doing is more than we should and we’re great….and don’t forget to vote for us… I always hated writing such meaningless and non-responsive letters. My first drafts (which tried to address some concerns raised by the letter-writer) were often changed by my bosses into some filler devoid of meaning that had a better chance of being approved by the higher ups in the executive ranks.   The email I received from PHAC was so disappointing that I deleted it as I considered it unworthy  of either temporary or permanent storage in my inbox. A little later another parent forwarded to me the exact same “form letter” response that she got from the same person at the head of PHAC.  The emails we received from PHAC were signed by Theresa Tam.

    Who is Theresa Tam?

    Well, an article in the Ottawa Citizen today indicates that she is a pediatric infectious disease specialist who has now been appointed as “Canada’s top doctor”. Apparently, she was acting in the position and has now been appointed to the position.  The article quotes her as saying that public health involves: “harnessing the efforts of many to protect and promote the health of all Canadians, including the most vulnerable in society.”  However, the article suggests that one of her challenges (and perhaps this is mentioned because it may be perceived as a high-profile priority), will be dealing with the opioid crisis.

    Judging from the content (or lack of it) in her previous “form letter for autism” response to me, and other autism parents, it seems pretty obvious that she has no interest in tackling the “autism crisis” that has been festering for years. I guess our kids are not among those she considers “the most vulnerable in society”.

    One last point: much of the media articles and debate about CAP repeatedly contain the suggestion that CAP would benefit the autism community by ensuring the dissemination of information on “best practices” and new scientific discoveries, etc. about autism. I previously wrote that we already have bureaucracies that are mandated with such responsibilities.  The reference to PHAC’s job being “harnessing the efforts of many to protect and promote the health of all Canadians” is one example of what I meant. Instead of creating another bureaucracy, what we need is a Minister of Health to direct the head of PHAC to do their job and remind them that “all Canadians” include people with autism, who also happen to be pretty vulnerable.

    The Ottawa Citizen article is available here:

    http://www.ottawacitizen.com/health/theresa+named+canadas+doctor/13550152/story.html

     

    #22736

    Andrew Kavchak
    Participant

    Hi Folks,

    The National Post published an interesting article today about the political skirmishes over funding for the proposed “Canadian Autism Partnership”.

    Here are just some thoughts about the article…

    1. There is a reference to the CAP as being at “arm’s length”.  That’s an issue that has not been discussed much.  To me, it risks being marginalized. When the federal government, or one of its departments or agencies, talks, there is some weight to it. When a small office bureaucracy at arm’s length talks, especially a new one that no one has ever heard of before, which has no power or authority, and which is temporary in nature with a limited lifespan (the business plan says five years), who will pay attention?
    2. The same paragraph suggests that the CAP would “advise provinces and territories on programs and services”.  It is interesting to note that the federal government is not mentioned. Thus, one can assume that if the Tories (or Liberals) were to fund it, they would subsequently respond to all autism related requests by saying “we’re already doing our part funding the CAP” and you could forget asking the federal government for anything while the CAP is in existence.  From the provincial perspective, this might be perceived as a federally-funded autism lobbying bureau.  I’m surprised that the journalist did not ask the provincial government what do they think of this proposed CAP and use their quotes in the article.  While one would naturally assume that the provinces would welcome helpful information and suggestions, this may easily be viewed on the receiving end in a different light (i.e., as more of lobby group than an advisory one).  If the provinces welcome the CAP idea, why don’t they offer to pay for it?  If the federal government is so stubborn, why don’t the people behind the CAP project approach the ten provinces and three territories and ask them to fund it?
    3. Finally, for the first time, it appears that there is some sort of indication as to why the Liberals did not provide the requested $19 million.  While Mike Lake is quoted as suggesting that no rationale has been provided and wonders whether this was “simply political”, a spokesperson for the Health Minister suggested that there was no unanimous support in the autism community. So there’s a lot of finger pointing going, and the Government won’t actually say what it thinks of CAP.  Instead, they put the responsibility on the autism community to be unanimous. Well, anyone who has observed the autism community for any length of time knows that unanimity is not our strength.  When the Auton case went to the SCC in 2004 and we were on the verge of having autism treatment under Medicare from coast to coast, there was an intervenor (one of the self-advocates) from the autism community who wanted to be on the record as being opposed to ABA, etc. When the Senate Committee held hearings in 2007 regarding funding for autism treatment, you should have seen the variety of responses (ranging from YES to NO) from witnesses from the autism community who were asked if they were in favour of a legislative amendment to ensure autism treatment under Medicare.  But that lack of unanimity is the same with everything. Politicians have to make decisions knowing that every decision will generate opposition.  Sometimes they adopt positions unfavourable to a lot of people, but like Paul Martin once said “rights are rights” (he was suggesting that some things may not be popular, but they are non-negotiable under the Charter). Unfortunately, neither he, nor Harper, nor Trudeau, appear to believe that “rights” extend to kids with autism getting access to ABA treatment under Medicare.  While I’m pleased to hear that the Minister of Health’s office is actually taking the communication from the community into account, I’m fed up with the suggestion/implication that they would have funded CAP if only more people in the autism community had been in favour. Another cop out on the leadership front.  If the government does not like the proposal, it should not be afraid to say why.  Of course, we know why they won’t provide any rationale.  From their perspective, it’s a non-starter (this is “political”), and anything they say will result in criticism and blowback and they instead think they can minimize the hullabaloo by just ignoring the matter…and conveniently point fingers at the autism community and the lack of unanimity.
    4. The Chair of the Board of Directors of Autism Canada (formerly known as the Autism Society of Canada) should be commended for saying that his organization has concerns about another level of bureaucracy (along with concerns about whether it would be successful). I’m sure he probably said a lot more to the journalist but she had to summarize. But wait!  The CAP business plan was prepared for the Minister of Health by the CASDA Board of Directors (with input from a working group and a self-advocates advisory group).  The CASDA Board of Directors members are listed in the report and includes a senior executive of Autism Canada.  The CAP business plan also starts with a letter to the Minister of Health which introduces the report and urges the Minister to adopt it (“…time to sound the alarm.”). And guess what?  The introductory letter is signed by three people, including the President of Autism Canada (and the Chair of CASDA – of which Autism Canada was a member at the time).  So in other words, Autism Canada was involved in the creation of this CAP thing and put their name on the business plan and proposal to the government.  But now, after contributing to the development of this proposal (over a two year period), it seems they gave birth to a baby they neither want, nor are willing to give up for adoption. Well, no wonder we don’t have any unanimity in this community, we don’t even have any consistency.  Has Autism Canada posted on their website any statement to explain this flip-flop on their part?  I can’t find anything.  Why not?  Presummably, like the Liberals not wanting to talk about CAP and why they did not fund it, some things are more likely to become distracting nuissances if they are addressed, and are more likely to not be noticed and just go away if they are silent about it. Welcome to the world of political transparency and leadership.  So….who do you trust? Who speaks for you today?  Or tomorrow? I know a few people and organizations that have been crystal clear, transparent and consistent from day one, many, many moons ago….Dr. Sabrina Freeman, FEAT BC,  Medicare for Autism Now, etc.
    5. Lake claims that Philpott told him she asked for CAP to be funded in the budget. That’s interesting.  If true, was she just trying to get the pressure off of her and point the finger at the Minister of Finance and his officials? Or was she truly surprised when the Finance Minister rejected her request? This raises a lot of questions and I wish I was a fly on the wall in those meetings.  Did Philpott try to appeal to Morneau to get him to reverse the decision?  Did she try to appeal to PMO? Did she propose anything else for autism?  Has she got any kind of “plan B” for the autism file?  As usual, anything to do with mony is ultimately up to Finance.  But when we lobby Finance about autism issues, they reply that the matter relates to health and they passed our letter to the Minister of Health.  In other words, we need a strong Minister of Health who understands the issue and who considers it a priority she (or he) will fight for in meetings with the Finance Minister.  Regrettably, having a Minister of Health who is a doctor does not seem to help much. Maybe if they were a psychologist familiar with the benefits of ABA that would help.
    6. Dr. Stephen Scherer (he’s a major and well-known autism researcher) suggested that the CAP would have helped the results of research to be used across the country.  Well, how are the results of research disseminated across the country (and the world) at this time?  Do we not have the means by which to do that now?  And do the national and provincial departments of health not have any existing networks to share their analysis and evaluations of scientific discoveries and related “best practices” with respect to health issues?  Does the federal government fund other such “partnership” models for other diseases or medical conditions for purposes of better use of research results? If so, why were the models not referred to in the CAP business plan report? I remember back in 2007 the Health Minister of the time (Clement) held a news conference on the eve of one of our planned Auton anniversary demonstrations on the Hill. He announced an autism “five-point plan”.  One of the points included a “by invitation only” conference of experts and researchers in the field that was organized and hosted by the Canadian Institutes for Health Research (CIHR).  Did they not discuss how to coordinate autism research and how to analyze and disseminate the information? But of course, Dr. Scherer was a member of the CAP working group, so it is not surprising that he would speak in favour of CAP (notwithstanding Autism Canada’s demonstration of how one can also reject what one has helped create).
    7. Again, we don’t have reliable statistics on the prevalence of autism. This matter was also one of Clement’s “five point autism plan” in 2007.  Health Canada was supposed to do a survey on how it could conduct surveys, and then it was (hopefully) going to keep statistics on the autism prevalence rates. Well, you can’t really do public policy and allocate scarce resources to a problem if you don’t know how big the problem is.  So one of the techniques to avoid confronting a problem is to feign ignorance about the size of the problem. Ergo, there’s your incentive to not gather statistics. And just how would the CAP bureaucracy help in that regard? Just another one of the “issues” they would have to conduct another survey about in the “issues identification” part of their process (which would inevitably be sidelined by other equal or more pressing concerns such as “community safety”, as the head of CASDA wrote in her “rebuttal”) . I remember a few years ago finding online one of the recent (at the time) CDC documents about the autism prevalence rates in the US. The CDC is considered the most authoritative source of info on the matter. My recollection is that the report and prevalence rate was based on a survey.  Why is that methodology OK for the U.S., but can’t be done here?  It would at least be a start and better than what we have now (nothing).
    8. Finally, Mike Lake is apparently concerned about options for adults with autism, especially after the parents are “gone”.  Same here.  But how is CAP going to help to open up more spaces in group homes and related facilities where adults with autism can be housed and cared for?  Would some money from the federal government, and a conference hosted by the federal Ministers of “Persons with Disabilities” (Carla Qualtrough) and “Families, Children and Social Development” (Jean-Yves Duclos – who delivered a “National Housing Strategy” that does not contain the word “autism” in its 66 page report – https://www.letstalkhousing.ca/) and the provinces, which would involve the negotiation of an accord which would provide more federal funds with strings attached for the creation of more housing spaces for autistic adults help at all? If the federal and provincial governments were really concerned about this housing of adults with autism issue, they could get together directly and discuss how to be improve the situation. They each have armies of bureaucrats who could do all the preliminary research and evaluation of what would be needed and what could be delivered.  If they need any specific outside expertise for any specific issues, they can (and always do) contract outside consultants/experts from the private sector.  Where there is a will, there is a way.  There is no need for CAP. CAP would make the resolutions of problems that require additional funding from the federal government more remote.  The federal government negotiates accords of all kinds (including healthcare, mental health, homecare, etc.) with provinces.  It is simply time that they do so regarding autism.  CAP would make such fed-prov negotiations about autism unlikely because the feds would just point to CAP as evidence of them doing their part. This is clear from the frequency with which Mike Lake inserts the word “jurisdiction” in many of his speeches and media interviews on the subject.

    From:

    In rare display of unity, opposition hammers Trudeau on ‘cold-hearted’ autism funding decision
    <h1 class=”entry-title”>In rare display of unity, opposition hammers Trudeau on ‘cold-hearted’ autism funding decision</h1>
    <h2 class=”excerpt”>In May the Liberals voted down a private member’s motion, tabled by Conservative MP Mike Lake, that called on the government to fund the partnership</h2>

    #22734

    Andrew Kavchak
    Participant

    Hi Folks,

    As the House of Commons tries to wrap up a few important loose ends before shutting down for the summer, the word “autism” keeps coming up. For the past couple of weeks Mike Lake has been trying to draw attention to his “Canadian Autism Partnership” project and his motion for the government to fund. Even though the vote resulted in a loss, he has continued to raise the matter and question the Liberals on it. As I’ve previously posted, the resulting transcripts of the exchanges that are recorded in Hansard are heart-breaking.  So much time, energy and hot air supposedly devoted to the issue of “autism”, yet, none of the speakers, on either side, seem to be even remotely close to addressing what I consider to be the key public policy issues affecting our country.

    And it continued yesterday.  In the process, the “CAP” project seems to have been inflated and assumed some sort of exaggerated “Holy Grail” type of meaning for some people which represents the solution that will solve all autism problems (in their dreams anyway).  The other day Erin O’Toole referred to it in the House as a “national program”.  Yesterday, the Prime Minister was asked about the lack of Liberal support for the CAP by three leaders of opposition political parties.

    The Conservative Party leader made reference to famlies being forced to mortgage their homes to pay for “intervention programs” (why not just say “to pay for ABA treatment in the private sector because Medicare discriminates”?), but he does not indicate how is funding CAP and creating the new bureaucracy going to resolve that discrimination in Medicare problem.  Lots of beating around the bush here and pretending that we all understand the issues and are on the same page, when we’re not.  And of course Trudeau refers in his reply to reseach, surveillance, and networks of people “raising awareness”.  He may consider such repeated answers to be a political “bullseye”, but he is merely avoiding the key issues.

    Now, anyone with half a brain can see that this debate is loaded with “politics” and lots of “partisan politics”.  Each party and each politician is trying to set themselves up as the most understanding and responsive to the needs of Canadians with autism.  To those who have observed this political football being tossed back and forth between parties and governments over the past few years (decades), it has become an almost nauseating element of the discourse.  The opposition won’t even challenge the Liberals to address their own party policy resolution on autism, and the Liberals won’t even mention the words “Canadian Autism Partnership” or “CAP”.  It is almost as if the partisanship prevents those in the politcal arena from speaking the same language as us.  And then Tom Mulcair of the NDP, who, like Jack Layton before him, always seems to present himself as the most reasonable and clear-thinking person in the national legislature, asks a question and refers to the CAP issue as “non-partisan”.  Thank you Mr. Mulcair for the comic relief. He then suggests that CAP will remove challenges and unlock potential.  Really?  How? Why would the government not want to assume that kind of role and function directly, instead of creating a new bureaucracy with no power or mandate other than to lobby (i.e., send emails and letters, make phone calls, request meetings, etc.) and be completely dependent on other institutions (e.g., provincial governments, etc.) to make decisions regarding the allocation of resources and removing challenges and unlocking potential?

    Then there’s the Green Party leader who asserts that autism families need hope, and suggests that this can (only?) come from Government support for CAP.  And the PM responds by suggesting that his staff have “met repeatedly” with Mike Lake to talk about “moving forward” in “concrete” ways, bla, bla, bla…  How  I wish someone would point out to the PM and his staff that there are lots of other people besides Mike Lake who have ideas about concrete ways to move forward and truly improve the lives of Canadians living autism and their families (that are better than CAP).

    The one good thing about all this pressure on the PM is that he and his staff obviously have to devote some time and energy on this autism thing.  As a result, it is quite possible that the PMO and the Minister of Health (and Finance?) and their policy guys may be giving some thought as to how to make this line of questioning “go away”, and in the process, how could the Liberals trump the opposition with something that leaves CAP in the dust.  Well, of course, there is their Liberal Party autism resolution.  I gather that there are now some people involved in the policy wing of the Liberal Party who are currently establishing a Working Group with a view to preparing a report for the Government that would elaborate on the autism resolution and how it could be implemented.  This report would hopefully help the Liberal caucus and cabinet “buy in” and actually adopt some measure(s) that may help.  I hope that the people involved in the Working Group have the understanding and knowledge of what is at stake, that they consult with truly helpful people, and that they come up with a good report that convinces the Government to take some meaningful action.  I have no idea what their timelines are, or whether there will be any milestone events before the next election, but hopefully the matter will now rise up the priority list given that the leaders of the opposition have now raised the matter with the Prime Minister and forced him to stand up several times in the House to address autism and what his Government is doing about it.

    It is a funny situation. While on the one hand I can’t wait for the MPs to close down the House of Commons for their summer break and stop the current line of misguided “debate”, but it feels like the poker is in the fire and it would be nice to observe how things unfold and how long the opposition can keep up their pressure while the furnace is still on. I guess we’ll see in September whether they will carry on or forget about it.

    House of Commons, Hansard, June 21, 2017

    Mr. Speaker, more and more Canadians are realizing that the Prime Minister‘s decisions hurt the very people who he claims to help. Nothing underscores this more than his rejection of the Canadian autism partnership.


         Many Canadian families are forced to mortgage their homes to pay for early intervention programs and more than 80% of adults with autism struggle to find meaningful work. They are just looking for a little compassion from the Liberal government.
    When will the Prime Minister finally listen to these Canadians and reverse his cold-hearted decision to reject the Canadian autism partnership?
        Mr. Speaker, we recognize that autism spectrum disorder has a significant lifelong impact on individuals and families. Federal investments in research—
    <b>Some hon. members:</b> Oh, oh!
    <b>The Speaker: </b>

    Order, please. That side still has one more question. I hope it wants to keep it. We will listen to the answers.

        The right hon. Prime Minister has the floor.
        Mr. Speaker, 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 those efforts through our programs. We have indeed invested over $39 million in autism research over the past five years to the Canadian Institutes of Health Research.

    Mr. Speaker, the Prime Minister promised that, unlike Stephen Harper, he would work with all parties to get good things done. However, when a member of this place moved a non-partisan initiative to create a Canadian autism partnership, the Prime Minister and his party voted against it.

         This is about removing the challenges facing individuals with autism and facing their families. It is about unlocking the tremendous potential of these Canadians.
        Why can the Prime Minister not move beyond partisan politics and support this important autism initiative?

    Mr. Speaker, we recognize that autism spectrum disorder has a significant and lifelong impact on individuals and 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. We have invested more than $39 million in autism research over the past five years. In addition, we have made many initiatives that help families, whether it is the Canada child benefit, which is increasing support for nine out of 10 Canadian families, including strengthening the child disability benefit alongside—

    Mr. Speaker, I think the whole House can see from the questions from the leader of the official opposition, the leader of the New Democrats, and now from me that there is an extraordinary broad consensus on this side of the House that Canadian families and individuals living with autism really do need more than what they have so far.

     I would ask the Prime Minister if his next answer could contain some hope for those families that help is on the way and that the Canadian autism partnership will find support from the current government.
        Mr. Speaker, we recognize the extraordinary work that Canadians across the country do to support their loved ones, particularly those living with autism spectrum disorder. We recognize the stories and compassion that have been shown by people as they share their desire to do more to fight the impact autism has on people who live with it.
     My staff has also met repeatedly with the member for Edmonton—Wetaskiwin to talk about how we can move forward in concrete ways that will make a difference in the lives of so many Canadians.
    #22728

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, the wheels just keep spinning in the House of Commons as Mike Lake and the Liberal spokesperson du jour repeat and repeat the same things over and over again.  Again, you won’t see the reference to “access to treatment”, but you will see Mike Lake emphasize the “jurisdiction” issue.  Mike Lake is recognized, by his friend, for his “tireless, hard work” for our community, and he responds with criticism of Liberal (in)actions which result in “zero impact” (in stark contrast to what Mike Lake and his party have done, I suppose), and finally the Liberals confirm that they “remain committed” to something…bla, bla, bla…  I would love to see an announcement that the federal Minister of Health has requested her provincial counterparts to have a meeting with autism policies on the agenda.  It does not sound like the idea has come up on either side of the House.  I guess that “jurisdiction” thing keeps getting in the way.

    From the House of Commons Hansard for Thursday, June 15, 2016…

    As I have been doing the last few nights, we are going to do this on Facebook Live again just so Canadians have a chance to see the discussion going on about the Canadian autism partnership. We would ask people who are watching this and seeing it on Facebook to please share it so that more people can see the conversation.

        It is interesting. This is the fourth time we have done this in the last week, and we have had four different parliamentary secretaries answer questions here. We had the Parliamentary Secretary to the Minister of Health. We had the Parliamentary Secretary for Sport and Persons with Disabilities. Interestingly, the other night we had the Parliamentary Secretary to the Minister of National Defence, and tonight we have the Parliamentary Secretary to the Minister of National Revenue, which is interesting. I am not sure if it is strategic, but the Parliamentary Secretary to the Minister of National Revenue is a very good friend of mine, so it makes it a bit more interesting in terms of the approach. I am not sure if that is a strategic thing, but it will be interesting to hear her answer today.

        First, a bit of background on the Canadian autism partnership. In budget 2015, our government put together an expert working group. It did work, along with a self-advocates advisory group and the Canadian Autism Spectrum Disorders Alliance of organizations from across the country. They heard from almost 5,000 stakeholders during their consultations. They had 19 meetings, specifically with the provinces and territories, every single province and territory, to talk about this. They worked for two years on this, then they came to the Liberal government with a budget ask of $19 million over five years, which is $3.8 million per year or, as I said, a dime per Canadian per year.

        The budget put forward by the Liberals is over $25 billion in deficit this year alone. I did a bit of math. They rejected the Canadian autism partnership in that budget, a budget with a deficit more than 6,500 times what was asked for by the Canadian autism partnership. The deficit alone is more than 6,500 times the amount they rejected for the Canadian autism partnership, and there was not a single mention of autism in that budget.

        The Canadian autism partnership’s purpose is to help Canadians living with autism and their families. Many of the challenges are provincial in nature, but what the partnership would do is bring together a true partnership of experts from across the country: people with autism, families, organizations that do work, researchers, and scientists. It would bring together this partnership of experts to advise governments in their jurisdictions on what the best way forward policy-wise is on issues directly affecting families, such as early intervention, education, housing, employment, and transition to those years when the parents have passed on. One of the biggest concerns for families is what is going to happen to their loved ones once they are gone. They would advise governments to make the very best evidence-based decisions.

        We moved a motion on this on May 30, and every single Liberal, except one, voted against it.

        I have called on Canadians to take some action steps, because we live in a democracy. It is important to note that members from all parties, I think, get involved because they want to make a difference. Certainly, the most important thing Canadians can do right now who are concerned about this is reach out to their Liberal MPs through Twitter, through Facebook, and through emails and phone calls to let them know, respectfully, why the Canadian autism partnership is important to their families.

        Of the member opposite, I am going to ask the same question I have asked many times during question period, the same question I have asked four times during these late shows.

        On May 30, every Conservative member of Parliament, every New Democratic Party member of Parliament, the Green Party member of Parliament, the leader, stood in this House in favour of the Canadian autism partnership. My hope is, today, that my good friend, the parliamentary secretary, will put the script aside and explain why she and her Liberal colleagues chose to put the political interest of their party ahead of Canadians living with autism.
     

    Mr. Speaker, first and foremost, I want to thank my hon. colleague and good friend, not just for his question but for all the tireless, hard work that he does on behalf of all those affected by autism. I have a lot of respect for my colleague because of his advocacy for the most vulnerable in our communities.

        Our government recognizes the complex challenges facing families affected by autism spectrum disorder, also known as ASD. This is why, federally, we are supporting a range of initiatives that are needed to make a difference for families, and that will increase inclusion and participation in society by Canadians with disabilities or functional limitations.

        Several federal departments and agencies are advancing work on ASD, including the health portfolio, Employment and Social Development Canada, as well as other federally funded organizations that are focused on brain health and neurodevelopmental disorders.

        The Minister of Sport and Persons with Disabilities has recently conducted Canada’s largest ever national consultation on disability and accessibility issues in preparation to introduce federal accessibility legislation. Over 6,000 Canadians participated in this consultation, which ran from coast to coast to coast. The minister just released a report on what was learned from the rich input received. This legislation will ensure greater accessibility and opportunities for Canadians with both visible and invisible disabilities, including Canadians with autism, in their communities and workplaces.

         Through this process, our government is embarking on a new era of leadership, collaboration, and co-operation in improving accessibility and increasing the social, economic, and civic participation of the 14% of Canadians with disabilities, including those with autism spectrum disorder.

        As a registered nurse, I am fully aware of the costs of taking care of an individual with a severe disability. That is why our government continues to provide the child disability benefit, an annual amount of $2,730 per child eligible for the disability tax credit. This is in addition to the $2,300 average increase Canadian families now receive from the recently revamped Canada child benefit. Through Employment and Social Development Canada, we have also made a long-term investment of $7.5 billion for early learning and child care, for which families with ASD are eligible.

        We have also heard from individuals with autism spectrum disorder and their families that supportive housing and employment are key issues of concern. That is why budget 2017 includes a commitment to invest $5 billion over 11 years in a new national housing fund that will prioritize support for vulnerable Canadians, including persons with mental health challenges and intellectual and physical disabilities.

         In the area of employment, we know that people with disabilities, including those with autism spectrum disorder, face unique challenges in preparing for and entering the labour market. That is why we are investing $40 million through the opportunities fund for persons with disabilities, administered through Employment and Social Development Canada, to support their transition to the workforce.

        These are examples of the practical and very tangible measures that we have in place to help families living with autism. Within the health portfolio, our government is also making investments in research and improving national data as foundational areas to support autism spectrum disorder. The Public Health Agency of Canada, working with provinces and territories, has established the national autism spectrum surveillance system, which is collecting and tracking reliable data on ASD prevalence and incidence, describing the epidemiology of ASD and comparing patterns domestically and internationally.

         While there are no quick solutions when it comes to the challenges posed by ASD, our government is committed to working in collaboration with the autism spectrum disorder community to ensure that our initiatives support the needs of those affected by ASD. We believe, and are confident, that by working together across sectors and jurisdictions, we will continue to make progress.
    <b>Hon. Mike Lake: </b>

        Mr. Speaker, like parliamentary secretaries before her on several days and like the Prime Minister, the hon. member talks a lot about initiatives that the former Conservative government put in place and an endless series of consultations and meetings in the future by the Liberal government, which will have zero impact on Canadians families that desperately need it right now.

        I know the hon. member to be a compassionate person, and I know she was whipped to vote the way she did on May 30. Her colleagues were as well. Several of them assured me they would support the Canadian autism partnership and then voted against it down the road. “Things do not happen. Things are made to happen.” That is a quote from John F. Kennedy.

        For Canadians watching, we live in a democracy and it is very important that Canadians make their voices heard right now. They should let their Liberal members know that this is critically important to them. For Liberal members and that Liberal member in particular, these are the moments that matter. Will she have the courage to go into the Liberal caucus meeting next Wednesday, tell her Liberal leadership to tell her colleagues they most clearly are on the wrong side of this issue and that she is not prepared to read the notes she is given any longer to defend this indefensible Liberal position on autism?
     

    Mr. Speaker, as I have stated, we remain committed to ensuring our federal programs are aligned to meet the complex needs of people living with autism spectrum disorder and their families. Our investments in vocational training, research, and improving data are core to the federal role. I greatly admire the dedication of organizations that work tirelessly to provide important services and to raise awareness that leads to better understanding of disabilities like autism spectrum disorder.

        We will continue to engage our partners in provinces, territories, and the autism spectrum disorder community on ways to increase the reach and impact of federal investments and make a difference for those affected with autism spectrum disorder.

     

    #22725

    Dione Costanzo
    Participant

    Thanks Andrew!  To be honest I was very hesitant about getting on a call with Mike Lake (I have met him before and I knew how the conversation was going to go), but I thought I would take the opportunity to tell him directly exactly what I thought of his CAP proposal and to officially ask him to stand in the House and refer to the Liberal resolution.  Yes it was long and I actually ended up basically cutting off the conversation because we were just going in circles but I was also hoping to get through to his assistants in some way. 🙂

    Are you on social media?  Myself and several others are posting your article in as many places as we can it is excellent:

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

    If you want to contact me directly I am at dionecostanzo@gmail.com  I will post any further pertinent news here!

    Cheers, Dione

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