[FEAT BC Admin]

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.

Topic

[Andrew Kavchak]

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

<b>Mr. Andrew Scheer (Leader of the Opposition, CPC): </b>

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?

<b>Right Hon. Justin Trudeau (Prime Minister, Lib.): </b>

    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.

<b>Right Hon. Justin Trudeau: </b>

    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.

<b>Hon. Thomas Mulcair (Outremont, NDP): </b>

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?

<b>Right Hon. Justin Trudeau (Prime Minister, Lib.): </b>

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—

<b>Ms. Elizabeth May (Saanich—Gulf Islands, GP): </b>

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.

<b>Right Hon. Justin Trudeau (Prime Minister, Lib.): </b>

    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.

[Andrew Kavchak]

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…

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

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.

 

<b>Ms. Kamal Khera (Parliamentary Secretary to the Minister of National Revenue, Lib.): </b>

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?

 

<b>Ms. Kamal Khera: </b>

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.

 

[Dione Costanzo]

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

[Andrew Kavchak]

Hello Dione,

Thanks for your message and informative post. I congratulate and commend you for your ongoing efforts to lobby politicians (through social media, letters, phone calls, meetings, etc.).  Forty-five minutes with Mike Lake? I envy your patience!  Last year I went to the “Autism on the Hill” rally and afterwards I stood around speaking to some people.  Out of the corner of my eye I could see that Mike Lake was hanging around and it seemed that he was waiting for an opportune moment to approach me. I quickly walked away and tried to avoid him, but he followed me!  I was being stalked by an MP!  Where is the RCMP when you need them? Eventually near the Centennial Flame when I stopped to take my sandwich board sign off and put it in my bag he ambushed me and wanted to talk. I did not even look at him and tried to put an end to the discussion and took off as quickly as I could.  When I first met him following his 2006 election it sadly became clear to me that he did not know much about autism and was going to be one of our biggest obstacles.  The day will come when he too, like Chief Justice McLachlin, will either retire, or be defeated.  In the meantime, I stopped my regular protesting on the Hill as I feel like a new “dark age” has crept up on the Hill and no one is really paying any serious attention to key autism issues.

BTW, I met with Colin Carrie many years ago in his office. He has a son with Asperger’s Syndrome. He also gave me the impression that he was not really all that familiar with the needs, gaps and public policy issues relating to autism.  He also asked me to send him more information and suggestions.  I did so. And, like you, did not hear back from him. I believe he was a junior cabinet minister at one time in Harper’s government.  Although he came to our rallies before the 2006 election, I’m not aware of his actually doing (or saying) anything for autism since his party assumed power in that election.

 

[Dione Costanzo]

Hi everyone

Andrew – thank you so much for your ongoing posts and “reporting” on what is happening on the Hill.  I appreciate these updates and very often quote you in my social media posts and letters to politicians.

I wanted to respond to your latest post regarding the opposition tabling a motion for the Government to implement it’s own policy as I have been in touch with my own MP regarding exactly this.  I have been watching many videos over the past month or so showing a lot of time in the House being spent on autism – specifically Mike Lake and his supporters seeking support for his CAP motion.  One of the videos was of Rona Ambrose berating Trudeau and the Liberals for not approving $19 for this project in the budget.  Sitting next to Ambrose was MY MP – Dianne Watts – who nodded her head the entire time.  After seeing this I contacted Dianne Watts, let her know that I was not in support of CAP and the several reasons why, and told her that as opposition I thought it was her duty to hold the governments feet to the fire about keeping promises that they have made to Canadians and pressure them to enact the Autism Medicare resolution that they had passed in May 2016.

I received a letter back from her that she agreed that we do not need to discuss this anymore, and that there is no need for more bureaucracy.  She said that she had passed my concerns onto Colin Carrie (Health Critic) who was better able to address them.  I have not heard from Colin but I did receive a call from Mike Lake.

Mike Lake and I spoke for about 45 minutes and sounded like a couple of broken records.  Mike tried to convince me that we needed to “work together” meaning I should support CAP and regarding the Liberal resolution said “that will never happen”.  He let me know that most autism organizations in Canada supported his CAP proposal and that he thought $19 was a mere pittance compared to what he should be asking for (!!!!).   I told him what I thought of CAP and I repeatedly asked him to stand in the House and hold the Government accountable for what they told Canadian families with autism they would do when they passed the Autism Medicare resolution in May 2016.  Mike had me on speaker phone and had two assistants taking notes so I also spoke directly to them, asked them to record some facts about Mike’s history and told them about the Auton case and Bill C-304.

Dianne did not respond to my request for a meeting, but she is arranging a meeting with another Surrey parent who basically flamed her on Facebook (which I had resisted but apparently in cases like this it works) so I will attend that meeting and have the opportunity to educate her about the history of the autism community and in particular Mike Lake’s role in the autism community and continue to pressure her to publicly hold the Government accountable.  I did not ask for a motion to be tabled (I did not even think of that but will now look into it) but did ask both Dianne and Mike to fulfill their duties as opposition, stand in the house and ask the Government why they have neglected to act on the resolution as they have promised.  So much time spent talking about autism and the opposition does not even mention this??

I am encouraging everyone I know to contact their MP and let them know that 1) the Liberals did a good thing by defeating the CAP motion and 2) Pressure them to enact the autism medicare resolution.  Many people are working very hard to make this resolution a reality and the more the Government hears from all of us the quicker it will happen!

Andrew – thank you again your posts are invaluable to me and many others!!!!!

Dione

[Andrew Kavchak]

Hi Folks,

Two more thoughts about autism policies and the federal government…

First, yesterday in the House of Commons, former Tory cabinet minister and leadership contestant, Erin O’Toole, made the usual partisan speech criticizing the Liberals…but what he said about autism cought my eye.

From Hansard, June 12, 2017:

“<b>Hon. Erin O’Toole: </b>

Mr. Speaker, the resignation of Mr. Smith from Statistics Canada highlights something that the Liberal government does very well. It talks the sunny ways game, but secretly it is the most partisan. Its House leader has been setting records in the use of closure. Had there been a resignation of this level from Statistics Canada under the Conservative government, the howls of outrage would be across this nation.

Nothing highlights it better than votes on a nationalized organ donor registry or a national program for autism, paltry amounts of money in the grand scheme of this reckless spending, yet the Liberals whipped votes on these issues because it did not come from that side of the House. That is not leadership. It is not sunny ways. When more and more families have less work for mom or dad, soon Canada will not be very sunny. It will be a cloudy future.”

See his reference to a “national program for autism”?  What “national program for autism”?  I suspect he was thinking of the vote on Mike Lake’s motion for $19 million to support a “Canadian Autism Partnership” bureaucracy with a mandate to engage in “issue identification”, etc.  Is that now a “national program for autism”?  I don’t think he knows what he is talking about and this situation highlights the typical baloney that happens in politics where some small initiative, no matter how small (and unhelpful), can be perceived as “doing something” and then exaggerated and inflated to the point of being the solution to the most complicated of problems, and can be further characterized as a “national program”  I kind of get the impression that he could not be bothered to spend more than a few seconds on the file (perhaps challenging the attention span of a fruit fly) and I am somewhat relieved that he did not win his party’s leadership contest a few weeks ago.

Second, as many of you may remember, in 2016 the federal Liberal Party (the Grits) had a policy convention and adoped one policy regarding autism.  The policy is copied below.  Given that this is something that Liberal Party delegates adopted themselves, would it not be interesting if Mike Lake, or one of his Conservative Party (Tory) caucus colleagues, would challenge the government to actually implement the policy they adopted at their own policy convention (after all the debate among delegates, etc.)? Would any of the opposition MPs actually consider tabling a motion for the government to implement one of its own policy resolutions?

Of course, this is unlikely to ever occur, but it is interesting to contemplate.  The Tories would be challenging the Grits to actually do what they preach. If the Grits then do it, the Tories could claim some credit for goading them on. But if the Grits continue to ignore their own resolution, then the Tories could point to another example of Grits hypocrisy.  From that perspective, the Tories are in a win-win situation. But then again, if they do challenge the Grits to implement this resolution, the Tories may actually be perceived as supporting the concept of giving autistic kids the right to access treatment under Medicare with federal funding contributions, and that would likely be problematic for them (as they demonstrated throughout their period in government).

It is just such a shame that with all the motions and debates and voting in the House of Commons, no one has managed to get this policy on the House of Commons agenda (not yet, as far as I know).

MEDICARE COVERAGE FOR THE TREATMENT OF AUTISM

<header class=”session-type-“>Moved by Liberal Party of Canada (British Columbia)</header>

<article class=”session-summary” data-day=”all,thursday”>WHEREAS the rate of autism spectrum disorder (“ASD”) among Canadian children is 1 in 68 and rising;

WHEREAS Canada’s health care system currently excludes from coverage the recognized, science-based treatment for ASD called Applied Behavioural Analysis (ABA), despite the incidence of this neurological condition and advocacy from numerous citizen groups;

WHEREAS the BC Supreme Court, in 2000, found ABA was “medically necessary treatment” and “there were no effective competing therapies” and their decision was upheld in the BC Court of Appeal and the Supreme Court of Canada;

WHEREAS funding for ABA for ASD is insufficient and varies between provinces;

WHEREAS the lifetime cost of an individual receiving inadequate treatment (or none) for ASD is reliably estimated between $2.4 and $3.2 million, excluding indirect costs to society;

WHEREAS the US Government requires all states to provide treatment for ASD as part of state-wide Medicaid programs and 43 out of 50 states require private health insurers to provide coverage for the ASD treatment;

BE IT RESOLVED that the Canada Health Act be amended to include Medicare coverage for Applied Behavioural Analysis (ABA) for Autism Spectrum Disorder (ASD) or, alternatively, the Government of Canada work with all provincial and territorial governments to ensure inclusion of ABA for ASD within their respective Medical Services Plans

BE IT FURTHER RESOLVED that the Government of Canada provide funding to each province and territory to fully cover the costs associated with the provision of ABA treatment of ASD.

</article>

 

 

[Andrew Kavchak]

Hi Folks!

Well, two interesting announcements in Ottawa today.  First, Chief Justice of the Supreme Court of Canada, Beverley McLachlin, has finally announced that she will be retiring in December.  Halleluja!

As you may recall, she wrote the unanimous decision in the “Auton” case (November 2004) which overturned the B.C. Court of Appeal and B.C. Supreme Court decisions which determined that the non-provision of autism treatment under Medicare was discrimination and a violation of the section 15 equality provision in the Charter.  I remember reading the decision when it came out and noticing some strange errors of fact at the very beginning. For example, (I’m going from memory here…) I remember reading her references to Dr. Ivar Lovaas doing his ground-breaking work with autistic kids ….and she referred to Texas.  Since when is UCLA in Texas? I wondered.  It kind of gave me the impression that neither she, nor her Justice colleagues, nor the cleks (assistants to the judges who do background research and writing, etc.), actually studied the factums (briefs – written arguments), but made their minds up about the conclusion when they decided to hear the appeal.

A little after the case came out I remember getting an email from a veteran professor of law at the University of Ottawa who referred to the case and said that there was “hope” because the decision made reference to all kinds of research and the court found that there were promising emerging treatments, or something like that.  I wrote back to this “professor” and pointed out to him that in the Canadian legal system appeals are based on errors in law, and the only courts that make “findings of facts” are the courts of first instance (as far as I know there are very few exceptions to this rule and it certainly did not apply in Auton).  In other words, McLachlin had no business making any “findings of fact” or meddling with the findings of the court in B.C.. The SCC’s job was to determine whether the law was correctly applied in the lower courts.

But you know what the deal was….the province appealed, and then the federal government and other provinces intervened because any SCC decision would have consequences across the country.  Of course, none of the provinces, or the federal government, were in favour of that happening because, as we all know, giving kids with autism access to treatment under Medicare would signal the doom of Medicare, the bankruptcy of the governments, and the end of the world as we know it, right?  At the time, the federal Minister of Justice was Irwin Cotler, who had a reputation of being a “human rights lawyer and champion”.  After he had his department lawyers intervene in the case against the interests of autistic children, I wrote to him a letter and asked “how could you?”.  He actually wrote back to me and said that under the Constitution, his job as Attorney General required him to advise the Government.  Funny, isn’t it?  You can work in the private sector and academia and acquire a reputation of being a “human rights champion”, but when you use the government resources to argue against disabled children getting treatment, you still maintain the reputation of being a “human rights champion”!  I guess letting disabled kids access treatment has nothing to do with “human rights”.  I never really understood that.

But getting back to McLachlin, her decision in the Auton case boiled down to this: if it involves the expenditure of public funds, then it is entirely up to the legislatures.  In other words, the Constitution and the court system are irrelevant if public funds are involved.  Thus, she caved in to the fear-mongering of the governments, and overturned the decisions from the courts in B.C..

Ironically, I remember reading in a local newspaper about a year after the Auton case that McLachlin went to Australia and gave a lecture to students in the law faculty at Monash University. And what did she tell our Australian friends?  About the need for judges to have some spine and stick up to (against) governments and not be afraid to issue unpopular decisions! I was thinking of the Auton decision while reading the article. I seemed to me that she ignored her own advice and was a bit of hypocrite.

I remember a number of years ago being on a live local CBC radio afternoon show in Ottawa and the program host made a reference to the Auton case decision of the SCC and then to another subsequent Ontario court decision that seemed somewhat incompatible as it came to a different conclusion with respect to autism treatment (I think it was in the school system). The host asked me what was my reaction to these two decisions, and how I interpreted them. I replied that to me, the two decisions boiled down to this:  every judge on the Supreme Court of Canada should be the immediate recipient of some sort of “early departure” or “early retirement” incentive, and that there were a number of judges in Canada at the Court of Appeal level that should be entitled to immediate promotions.

I suspect the legal and political community will be hosting many “Goodbye Beverley” parties towards the end of the year, and I sincerely hope I get an invitation.  It seems to me to be an entirely appropriate occasion to celebrate and have a drink.

Second, did you hear the news today about the federal government signing a $7 billion national child care deal with nine provinces? It makes me wonder if Mike Lake will issue a statement suggesting some concern over “jurisdiction” and whether he would have preferred the federal government instead create some sort of “Canadian Day Care Partnership” bureaucracy to lobby the provinces to provide more day care spaces or something.  Just wondering…

[Andrew Kavchak]

Hi Folks,

Well, here’s some more “Qs & As” to help keep the merry-go-round spinning and going nowhere fast.  Yesterday in the Senate, our historic champion, Senator Jim Munson, got on the CAP project bandwagon and asked the government rep, Peter Harder (a former senior bureaucrat who “advised” the new Trudeau government during the “transition period” and was rewarded with a Senate seat….much like Trudeau’s father appointing Michael Pitfield to the Senate back in the 80s).

Regarding this exchange, once again, there is no reference to what is the actual problem(s) or challenges that families with autism face. No mention of lack of access to treatment under Medicare, etc. Instead, Senator Munson actually says that the feds should take the “…national lead in working on research, surveillance, indigenous groups — you name it…”  Yes, that’s it.  Forget access to treatment. After years of all that lobbying and court cases and petitions and stuff…we’re down to “research, surveillance, indigenous groups”.  And what is the “solution”?  According to Mike Lake, Senator Munson, etc., it is to fund the CAP project.  I disagree.  To me, this CAP project is a huge diversion and distraction which has completely changed the nature of the discourse about autism and autism policies.  Instead of talking about the real issues that need to be addressed, they go back and forth about funding for a new bureaucracy.  If the government does commit the funding, it will be a convenient way for the government to say “we’ve done something, we’re paying for it,…the autism problem is now solved”, when in fact anybody with just half a brain will know that the real issues have not be addressed and have not been solved.

Thursday, June 8, 2017

Senate

Health

Autism Support and Funding

<b>Hon. Jim Munson:</b> My question is for the Government Leader in the Senate.

Senator, I never thought I would have to ask this question — and actually, I really don’t want to ask this question — because I felt that, in March, when we had the budget, those of us who work in the autism community held out a strong hope, a really strong hope, that the government would approve — in the scheme of things, with the billions of dollars that are being spent — a modest amount of money, less than $20 million over a four- or five-year period, for a Canadian Autism Partnership — a partnership that was put in place by the Conservative government and through my work with Conservative MP Mike Lake. That was a modest amount of money, $2 million over two years. That partnership, which was established by CASDA, Canadian Autism Spectrum Disorders Alliance, brings together the overwhelming majority of autism groups across this country. Through that partnership, we wanted the federal government to take the national lead in working on research, surveillance, indigenous groups — you name it — across this country so that we can build upon the foundation we have now.

Alas, the money was not in this budget. However, I don’t give up hope. None of us give up hope; we sincerely hope.

How do you see the federal role in the future in terms of leading a partnership with the autism community?

<b>Hon. Peter Harder (Government Representative in the Senate):</b> Senator Munson, let me first thank you for your question and for your ongoing advocacy for the disabled generally, and the autism community in particular.

As I have said in response to several other questions on this matter, autism spectrum disorder is an area of significant concern for the ministers responsible. There is specific funding in Canadian Institutes of Health Research on the research side, about $8 million.

With respect to the funding that the honourable senator is speaking of, I will certainly raise that with the minister responsible. The government is taking other initiatives, including those of general application to families with disabled, in terms of the Canada child benefit and other measures, but I understand exactly the question being asked and I will endeavour not only to seek an answer but to ensure that the question is asked with the advocacy of your question.

<b>Senator Munson:</b> I thank you for that answer, because I don’t think one can ever give up hope. You have to remember as well, Senator Harder — and I think you do understand — that it was the Senate of Canada, all of us in this room, who approved a Senate report called <i>Pay</i> <i>Now or Pay Later: Autism Families in Crisis</i>. That was almost 10 years ago now. Yes, incrementally there have been a few things there, but it was the Senate that urged the government — all governments — to get involved. When we made that push at that particular time, the Conservative government took it upon themselves, with the Public Health Agency of Canada, to work on these things.

I can’t help but express real disappointment. When we began this quest, 1 in 150 had some form of autism; now it is 1 in 68. There is a crisis in this country. Everybody has a neighbour down the street, somebody in their family, somebody they know. People are moving across the country to get better services, from Atlantic Canada to Alberta. People are remortgaging their homes and, sadly, a lot of parents have divorced because of the stress that’s involved.

This is a request to implore you to talk to the ministers involved. I have spoken with both of them, and I’m hoping there is some sort of concrete announcement where, again, the federal government leads and works with the provinces, because we cannot continue to work in silos in this country.

[Andrew Kavchak]

Hi Folks,

Well, something strange is really going on in Ottawa.  It is so weird.  To get an idea of just how weird it is, you have to be aware of the background and the context.  First, in 2004 there was an Auton case that went to the SCC. The issue of access to autism treatment under Medicare has been an outstanding issue that is the number one priority issue for any parent of a newly-diagnosed child with autism, and for many parents of older children with autism.  It has been the primary issues for decades. Now, in 2017, we have an opposition MP with a child who is non-verbal hammering away at the Prime Minister (and getting lots of standing ovations in the House of Commons), but what is he asking about?  Treatment? Access to treatment under Medicare?  No.  He’s asking about the support for a new proposed bureaucracy.  And the PM’s anwers….if you look hard, the word “autism” is mentioned somewhere in there, but apart from that, nothing is said that would give any parent any reason for hope or relief.  So what does one call such absurd situations where two politicians are going through the motions of pretending to represent our community interests, but in fact neither have a clue of just how misguided they are?

After a meaningless exchange with the Prime Minister, Mike Lake went on later in the day to make several long speeches about his “Canadian Autism Partnership” project and his frustration over the lack of government support. However, when I read through it, I could not see anywhere where he identified what are the specific public policy gaps that Canadians with autism have to deal with, and how this “CAP” thing will possibly help. In other words, the whole debate is a complete diversion from the real issues (i.e., when will the feds arrange to meet with the provinces and negotiate a funding formula for the inclusion of autism treatment under Medicare, etc.).  So we have this absolutely ludicrous situation where one MP portrays himself as the “champion” for the autism community, the opposition parties give him standing ovations, the autism community (e.g., the CASDA folks) repeatedly thank him for his “tireless work on our community’s behalf”, and the Prime Minister actually has to respond to a question and a supplementary on the topic of “autism”, and yet both the questions and the responses have absolutely nothing to do with the key challenges the autism community faces.   It makes you wonder if either Mike Lake or the PM every considered asking a parent of a child with autism “what question about autism should I ask?” or “how would you suggest I respond to such a question about autism?” (I know, I know…Mike Lake has a child with autism….but another parent I mean).

From the Hansard for June 7, 2017

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

Mr. Speaker, in his rambling justification of his vote against the Canadian autism partnership, the Liberal House leader’s parliamentary secretary said:

<small>I disagree with members who say that it is 10¢ a day for this, or it is only $19 million. I can assure you that every one of the constituents I represent would argue that a million dollars is a lot of money.</small>

He will get no argument from this side on that last point. However, as the Liberal Prime Ministerracks up a deficit over 25,000 times that $1 million, how is it possible that Canadians living with autism were left behind?

<b>Right Hon. Justin Trudeau (Prime Minister, Lib.): </b>

Mr. Speaker, I recognize the member’s strength and passion on this issue. I recognize that autism spectrum disorder has a significant and lifelong impact on individuals and their families.

Federal investments in research, data improvements, 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.

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

Mr. Speaker, does the Prime Minister even know that in addition to the vast majority of Canada’s autism community, the Canadian autism partnership has received overwhelming support from every part of our country: the Canadian Association for Community Living, UNICEF Canada, Plan Canada, Save the Children Canada, World Vision Canada, Global Citizen, Hayley Wickenheiser, Elliotte Friedman, and many more.

Conservative, NDP, and Green members were unanimous in our support for Canadians living with autism, yet every single Liberal, but one, voted against the partnership. Could the Prime Minister please explain this decision?

<b>Right Hon. Justin Trudeau (Prime Minister, Lib.): </b>

Mr. Speaker, through the Canadian Institutes of Health Research, the Government of Canada has invested more than $39 million in autism research over the past five years. This investment contributes to providing the research evidence needed for the development of new tools and treatments for those suffering from autism.

We recognize the challenges families are going through and we stand ready to support them.

 

[Andrew Kavchak]

Hi Folks,

Some interesting fallout from the vote on the CAP motion in the House of Commons yesterday.

First, Mike Lake posted a picture on his Twitter thing of all the politicians who showed up on “Autism on the Hill” day this year.  He points out that 12 Liberals MPs showed up and were glad to have their picture taken, but all 12 voted against his motion to fund the CAP bureaucracy.

I’m under the impression that he does not like the taste of his own medicine.  This phenomenon of opposition MPs pretending to support something and then turning on you when they are in government was also very well played out by the Conservatives. I remember organizing numerous rallies in 2004, 2005, and 2006 when the Tories would attend and make all kinds of supportive speeches.  Many of them are referred to at page 5 of this document:

Click to access FEATBC_release_02_26_07.pdf

You may recognize some of the names: Colin Carrie, Steven Fletcher, Pierre Poilievre, Gary Goodyear, Peter Goldring, Guy Lauzon, Stockwell Day, Randy Kamp, Gord Brown, James Lunney, Mark Warawa, Scott Reid, Carol Skelton, etc… Yes, they all came to the rallies and press conferences and said “something had to be done”.

Then in 2007 these same MPs were asked to vote on Bill C-304, Shawn Murphy’s bill that would have required the federal Minister of Health to meet with provincial counterparts and develop a national autism strategy, as well as including autism treatment in Medicare, and guess what?  All of these Tories, who were previously supportive when they were in opposition, suddenly found that when they were on the government side, they had to vote against the Bill before it could even be sent to the “committee stage” for examination and clause-by-clause review.

In fact, Mike Lake even issued a typical political tract to explain his position, stating that the Bill was “bad legislation”.  Did he, or any of his caucus colleagues who were previously so anxious to help our community (when they were in opposition) ever propose or table an alternative that he considered “good legislation”?  Nope. So far, the only legislation of any relevance that has become law was Senator Munson’s “Autism Awareness Day” Bill.  But let’s face it, that piece of legislation has not helped one kid get access to treatment under Medicare.

To me, this episode shows that people like Mike Lake have poor memories and are somewhat hypocritical. It would be nice if while he tries to shame the Liberals who showed up at the “Autism on the Hill” that he would have the honesty, candour, and integrity to point out that this situation is really a “deja vu” for the autism community, and we’re a little fed up with the false bravado and finger-pointing in the usual blame-game.  This drama would be a nice comedy if it wasn’t so tragic.

Second, there was an interesting news story on Global about the vote….

http://globalnews.ca/news/3486143/liberal-support-for-national-project-linked-to-autism-remains-uncertain/

The report starts off by saying: “The House of Commons is scheduled to vote Tuesday on whether to fund a national partnership that says it will try to get all provinces and territories on the same page when it comes to autism.”

It later concludes by saying: “It’s unclear if the unifying work being proposed by the Canadian Autism Partnership could be done more efficiently in-house by the government itself.”

This is one of the points that I previously raised.  We already have a federal Department of Health and a Public Health Agency of Canada, along with 10 provincial Health Departments.  Do we really need another bureaucracy?  Will we eventually try to create new bureaucratic institutions for every disorder/disease/syndrome/illness, etc.? What we really need is political will, and corresponding directions to the existing “civil service”.

 

[Author]

Replies