[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.

 

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—-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

 

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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,

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

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

The website says:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

[Andrew Kavchak]

Hi Folks,

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

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

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

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

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

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

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

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

(1610)

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

Jason told us:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In his budget, he said:

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

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

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

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

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

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

(1620)

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

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

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

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

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

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

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

<b>Hon. Senators: </b>Agreed.

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

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

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

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

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

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

Thank you, honourable senators.

(On motion of Senator McPhedran, debate adjourned.)

[Andrew Kavchak]

Hi Folks,

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

House of Commons, Tuesday, October 3, 2017

Autism

<b>Ms. Leona Alleslev (Aurora—Oak Ridges—Richmond Hill, Lib.): </b>

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

    However, just as invaluable are those researching to improve the lives of Canadians on the autism spectrum. Kayley Ting, a 17-year-old from my riding, presented her autism research project at the Prime Minister’s Science Fair. Kayley recognized that a challenge for those with autism is coping with sensory overload, so she researched a solution, a wearable device that identifies the causes of sensory overload, to help prevent future occurrences.

    Kayley’s project will strengthen the independence of those living with autism. Well done, Kayley and all of our young innovators, who have the courage to dream of the possibilities and the creativity and hard work to get it done.

[Andrew Kavchak]

Hi Folks,

An article appeared today on the “iPolitics” website about autism policies at the federal level going nowhere since the 2007 Senate report.

http://ipolitics.ca/2017/09/28/what-will-it-take-for-the-feds-to-get-serious-about-autism/

The article is strange.  It names some key players and provides the required number of quotes, etc. but in the process it seems to do more to confuse readers than enlighten them about anything. The article touches on a variety of autism “issues” without actually explaining any single one in any meaningful way. Instead, the issues seem somewhat muddled.  The words “ABA”, “Medicare” or “access to treatment” do not appear in the article.

My favourite line in the article is the one about opposition leaders being “outraged” last May when the Liberals defeated Mike Lake’s motion to fund his CAP project.  Outraged?  Really?  The same guys who were in power from 2006 to 2015 and did nothing are “outraged” that the new Government followed in their footsteps? Tasting their own medicine and recognizing themselves in their opponents must be a truly unpleasant experience for some politicians. Outraged? Who do they think they are kidding?

[Andrew Kavchak]

Hi Folks,

Yesterday in the Senate, our champion on the Hill, Senator Jim Munson, gave notice that he intends to say something real soon to mark the 10th anniversary of the Senate Standing Committee on Social Affairs 2007 report about the financing of autism treatment.

So….I don’t know if he is planning to make a major speech, or just say a few choice words, but if any of you wish to provide Senator Munson with some ideas or feedback that you think he may wish to consider taking into account when he “calls attention of the Senate”, now would probably be the time to send it to him.

For those who may have forgotten, in 2007 the Senate committee held a lot of hearings and issued a report (link below).

Click to access YC17-391-1-01E.pdf

Although there was a lot of discussion at the time about whether the report went far enough, etc. the report contained a few recommendations which were absolutely crucial then, and are even more so now.  These are my three favourites:

The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy;

The conference establish an appropriate level of funding by the federal government;

The conference identify measures of accountability in the use of federal funds for autism treatment;

There recommendations are similar to the themes in the Liberal Party of Canada resolution on autism that was adopted last year (see link below).

https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/

From: Senate Debates, Wednesday, September 27, 2017
<h2 id=”25″>Autism Families in Crisis</h2>
<h2>Tenth Anniversary of Senate Report—Notice of Inquiry</h2>
<b>Hon. Jim Munson: </b>Honourable senators, I give notice that, two days hence:

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

[Andrew Kavchak]

Hi Folks,

Another MP mentioned autism in the House yesterday.  The text refers to “a policy”, which is presumably the resolution that was adopted by the Liberal Party of Canada (LPC) last year at their policy convention in Winnipeg.

From Hansard, Wednesday, September 27, 2017

Autism

Mr. Ken Hardie (Fleetwood—Port Kells, Lib.):

Mr. Speaker, many people in this place and many right across the country have been touched by autism. It is something we do not know a lot about, but here is what we do know. One in 68 kids is somewhere on the spectrum, they say, and that has doubled in the last 10 years. We also know about the financial and emotional hardships it brings to families. We need to hear their voices on the way forward, which is why I will be holding a town hall this Saturday at the Fleetwood Recreation Centre from 3 to 5 p.m. It will be live-streamed on Facebook for those who want to tune in.

We are going to have Autism BC; Paula Williams, a mom who has lived the challenges and who has also made a great contribution to the national conversation on this issue; and Dave Hurford, who is working on a policy that he believes will move the government and the country forward.

We need to hear more. We need to do more. That is the focus. That is why are doing this town hall on Saturday.

[Andrew Kavchak]

Hi Folks,

Two interesting statements were made in the House of Commons yesterday. The first is by Hedy Fry, and the second by Sonia Sidhu.

While the first is your usual announcement of something likely going on in her riding which will likely be reproduced in her “householder” to demonstrate how aware she is of things going on in her community, etc. the second statement about diabetes is really interesting because of what it reveals about the engagement of some federal politicians in some “health-related” issues.  If you read Ms. Sidhu’s statement below, she indicates:

1. That she is the chair of the “all party diabetes caucus”.
2. In that capacity, she toured the country over the summer to meet with Canadians and discuss diabetes.
3. She is now looking forward in Ottawa to “get back to work on the priorities” which she heard during these consultations.

Which got me wondering…

1. Is there an “all party autism caucus”?  Perhaps made up of people who have family members that have autism, or simply MPs who want to be involved with trying to improve the lives of Canadians with autism and their families? I’ve never heard of one.
2. Wouldn’t it be cool if there were such a chair of such an “all party autism caucus” who spent the summer travelling across Canada doing some similar consultations?
3. Wouldn’t it be cool of such a chair were to return to Ottawa for the resumption of Parliament and announce that they were looking forward to “getting back to work on the priorities” which were conveyed and expressed to them during the consultations?

Who, among the 338 MPs in the House of Commons, do you think might want to get involved in such a thing?  And not just for the photo ops, I mean.

 

From: Hansard, Tuesday, September 26, 2017

Autism

<b>Hon</b>. Hedy Fry (Vancouver Centre, Lib.):

Mr. Speaker, autism affects one in 68 children. It restricts brain growth and social development. In my province of British Columbia, it impacts an estimated 56,000 people.

The good news is that in B.C. there is a place for families to go so they do not feel alone in their struggle. I am excited to tell the House about the work of the Pacific Autism Family Network and its newest autism hub in Richmond.

This provincial centre of excellence unites research, treatment and support for those affected by autism. Through spoke centres, it connects families, organizations and researchers in communities across the province.

I commend the founder, Wendy Lisogar-Cocchia, for her vision and commitment to this cause, and the members of the Pacific Autism Family Network team for their dedication in improving the lives of families with autism.

Diabetes

Ms. Sonia Sidhu (Brampton South, Lib.):  

Mr. Speaker, after a very busy and productive summer in my riding of Brampton South, I am happy to rise today.

This summer I joined my Brampton colleagues for a community celebration in July. I enjoyed seeing the diversity of my community through Carabram, and we marked Canada’s 150th anniversary together.

As chair of the all-party diabetes caucus, I visited Canadians across the country to discuss our healthy eating strategy and looked at ways to reduce the impact of diabetes, which affects 11 million Canadians.

I am happy to be back in Ottawa to get back to work on the priorities I heard during those consultations. I want to thank the hard-working health care advocates across the country who met with me and who are our allies. We are moving forward to defeat diabetes.

[Andrew Kavchak]

Hi Folks,

Every once in a while one can encounter a politician who is a genuinely sincere and nice person.  I say that because there are a lot of politicians that I do not feel any natural inclination to approach, but there are others who have magnetic personalities.  And sometimes….not always, but sometimes… those politicians with the magnetic personalities also happen to believe in our cause and support us.

One such politicians was Peter Stoffer, the former federal NDP MP from Nova Scotia.  When I started protesting on the Hill back in 2004, a fellow parent named Laurel Gibbons came to one of the rallies I organized. She wanted to get involved in the autism treatment agitation movement with me and others. She then indicated that she knew one MP, Peter Stoffer, and suggested that he might be able to help us. Well, he did.  He tabled a private members bill (or was it two?) and a motion (or was it two?), AND he let Laurel use part of his Parliament Hill office and his resources as a base for lobbying other MPs on the Hill. Laurel took advantage of the offer and for several years she spent a lot of time there. I remember once she called me to join her in a meeting with a Bloc Quebecois MP who wanted to know more about what this autism treatment agitation was all about, and Laurel thought my French was better than hers and asked me to join.  We managed to get some agreement on the basic idea of the feds giving money to the provinces, but not much more than that.  (Another meeting I had with the BQ health critic was hopeless – she was on the same page as Mike Lake about the sacrosanctness of the constitution on the jurisdiction front and told me to aim my arrows elsewhere.)

Peter Stoffer was an ally in the trenches and we were saddened to hear of his losing his seat in the 2015 election.

Recently, he announced that he has prostate cancer. However, he expects to undergo surgery this month and make a full recovery.

We wish you all the best Mr. Stoffer.  Our fingers are crossed and you  are in our thoughts.

Ex-NDP MP Peter Stoffer diagnosed with prostate cancer, says he ‘has 99 per cent chance of full recovery’

[Andrew Kavchak]

Hi Folks,

Back in June, before the summer “recess” for our glorious Parliamentarians, Senator Munson asked the Government representative in the Senate , Peter Harder, a question about autism policies.  Now that the Senate is back in session, the formal response has been tabled. I have copied below the exchange of June 8, and the response that was tabled two days ago.  My comments are below that.

Senate, June 8, 2017.
<h2>Health</h2>
<h2>Autism Support and Funding</h2>
<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.

Senate, Tuesday, September 19, 2017
<h2 id=”43″>Delayed Answers to Oral Questions</h2>
<h2 id=”116″>Health</h2>
<h2>Autism Support and Funding</h2>
(<i>Response to question raised by the Honourable Jim Munson on June 8, 2017</i>)

Our Government recognizes that Autism Spectrum Disorder (ASD) has a significant and lifelong impact on individuals and families.

The Public Health Agency of Canada is working with provinces and territories to establish the National ASD Surveillance System (NASS), which will collect and track reliable information to: estimate the prevalence of Canadians living with ASD and incidence of new cases; describe the population living with ASD; and compare patterns domestically and internationally. Public reporting of prevalence and incidence is planned to begin in 2018.

Through the Canadian Institutes of Health Research, the federal government invests approximately $8 million yearly in research related to ASD. This contributes to ongoing efforts to advance knowledge about underlying causes of ASD and translate this knowledge into better diagnosis tools and treatments for patients.

Through the $40 million Opportunities Fund for Persons with Disabilities, Employment and Social Development Canada funds organizations that help persons with disabilities prepare for, obtain and maintain employment.

The Minister of Sport and Persons with Disabilities conducted Canada’s largest national consultation in recent decades to inform the development of new federal accessibility legislation. This legislation will ensure greater accessibility and opportunities for Canadians with visible and invisible disabilities (including ASD) in their communities and workplaces.

__________________

Comments and discussion:

1. Senator Munson’s question was asked in the context of the failed “CAPP” initiative for which there was no funding in the budget, and which was the subject of a defeated motion in the House to support the “CAPP”.  While it is clear that the Liberal Government does not support CAPP, this is largely due to their complete ignoring of it and not even mentioning its name in any public discourse.  What exactly is the nature or basis of the Liberal Government’s opposition to CAPP is a mystery as they never offered a public critique of it (and thus betray a shameful degree of disdain for the concept of “debate” which is what they were, in part, elected for).  What is their proposed alternative is similarly a mystery, and judging by the lack of reference to anything, it would appear they have no alternative initiative to propose.
2. Although Senator Munson pleaded with Senator Harder to speak with the Ministers responsible and expressed the hope that things would lead to an announcement and that there would be future collaborative work with the provinces, Senator Harder’s response is devoid of any reference to such announcements or intergovernmental collaboration.  This is in stark contrast to the recent announcements of newly-negotiated “health accords” with each of the provinces in which the federal government agreed to provide funding for Medicare, and specifically tagged certain services, including mental health, home care, and even matters related to kidneys in Manitoba.  Regrettably, autism treatment does not appear to have been mentioned in any of these funding agreements.
3. Regarding the reference to the Public Health Agency of Canada (PHAC) effort to compile some basic data on the prevalence rate in Canada, this is of course the initial stepping stone in the development of sound public policy.  You can’t really allocate resources and develop a program to deal with a perceived problem if you don’t know how big the problem is in the first place.  Let’s put this in perspective.  The CDC in the U.S. has been issuing data about prevalence rates for a decades.  In 2007 federal Health Minister Tony Clement announced a “five point plan” on the eve of one of our planned demonstrations on the Hill, which included asking the PHAC to “look into” and “explore” (I think those were the words, or something like them) the possibility of collecting data on prevalence rates.  My recollection is that he did not ask the bureaucrats to compile the stats, but to research the question of whether it was even possible, and if so, how.  Well, here we are…a full decade later….and they are still working on it with a view to “estimating” the true figures.  On the one hand, I am glad that they are finally confirming that the public reporting is to begin in 2018.  This is important.  Our community will have to monitor these figures to see if they seem accurate, and take advantage of the opportunity to then pressure the governments to do something about it.  It is not clear if the figures will be reported on regularly (annually, or every two or five year updates?). If the figures are reported on a regular basis, we will be able to identify trends.  If the situation gets worse (in terms of increasing prevalence), then our community should beat the drums of “deepening crisis”, etc. and call for appropriate government action.  However, while having the figures and data to understand the extent of a problem is the first step in the development of appropriate public policy (i.e., government programs to deal with the issue), the next step is not going to happen if it is not considered a priority on the list of government “things to do before the next election”. Thus, if they take 11 years just to make an “estimate” of the problem, it may take several more years for Government officials to be convinced that they can do something meaningful. It will also be interesting to note if the PHAC report will have a concluding section with some recommendations about what needs to be done, from a “public health” perspective, of whether the report will stop short of making such recommendations, on the basis that they were not asked to provide such information and that it is not their “mandate”.  One can sometimes easily identify bureaucrats that actually care, from those who are just “doing their [minimalist] jobs”. Nonetheless, I think our community should flag this event in our 2018 calendars and be ready to ensure that this historic first report of Canadian autism prevalence rates results in much media and government discussion and is not ignored.
4. The rest of the answer about research, employment programs, and accessibility legislation is the usual “talking points” that we’ve all heard before, particularly during the House debates on the CAPP funding motion back in May.
5. So, it seems that on the federal front, the only two things that are happening and “in motion” are the Liberal Party of Canada (LPC) working group on the motion about getting autism treatment under Medicare with federal funding assistance, and the 2018 expected PHAC initial report on autism estimate prevalence rates.

 

[Andrew Kavchak]

Hello Joe!

Thank you for your message, feedback, and questions.

1. It is important to recognize the difference between the “Liberal Party of Canada” (LPC) and the Government.  It was the LPC that adopted the Medicare for Autism resolution last year.  While the Government is composed of members from the LPC, the resolutions are not binding on the Government.  In this sense, the LPC will be lobbying the Government, just like any other “stakeholder” with an issue to lobby about, although the LPC may have an easier time getting their foot in the door.  Thus, regarding your question about “smoke and mirrors”, the LPC exercise in forming a working group to develop a report with recommendations on how to implement the resolution is not an exercise that was requested by the Government, Cabinet or the Minister of Health (thus, no Government smoke or mirrors or anything).  Once the LPC finishes their consultations and develops a report, they will give it to the Minister and Cabinet, Caucus, etc.  The Government will then have to determine whether to “do something”, or shelve it (like the Senate 2007 report) and let it gather dust in the bowels of the Parliamentary Library. So this is a lobbying step in the direction of our common goal, but we are far from the finish line.  I believe the head of policy for the LPC, Mr. Hurford, is a sincere gentleman who really wants to do something good here.  Whether he is successful in convincing the Government will be an interesting stage to watch in the future.  However, if his working group develops a good report, it will be useful for the whole autism community to jump on the bandwagon to lobby their MPs, etc.  Whether the Government will do anything before the next election is probably unlikely.
2. Regarding the logistics of the actual operations, this may seem like a difficult challenge, but it can be done.  Unlike most visits to doctors and hospitals which are of short duration and relating to one procedure, the provision of autism treatment is a long-term thing.  However, our public health system also deals with many patients requiring long-term treatment for many other health issues, including issues that require moving into the hospital for long-term stays.  In Ontario the provincial Tories started a program under Mike Harris in 1999.  However, the “Preschool Autism Program” (now called the “Autism Intervention Program” or something) was not given to the Ministry of Health to administer, but the Ministry of Community and Family Services. Of course, the department does not have the resources to deal with all the kids, so there is a huge waiting list, and then they introduced a disgusting age-based cut-off (age 6), etc.  However, the interesting point here is that the Ministry did not administer and deliver the program. Instead, they contracted out with nine “regional providers” across the province.  And guess who was the chosen regional provider in Eastern Ontario?  The Children’s Hospital of Eastern Ontario (CHEO) here in Ottawa. In other words, the provincial government played a bit of a shell game where they said that this service is not covered by Medicare and the Canada Health Act, because it is not a service ordinarily provided by a doctor or a hospital.  However, by contracting it out, and then back to a hospital, they proved that in fact a hospital can provide the service.  In Ottawa the CHEO autism programs has several locations (facilities) around the city where families bring their kids who managed to get off the “waiting list” and have not yet “aged out”.  The facilities are nice and clean, with little rooms and tables and chairs with lots of props for ABA, and a one-way mirror/window so that a supervisor can watch the treatment and observe any progress, etc.  The key problem here is the lack of resources to eliminate the waiting list and the age-based cut off.  Now in recent years the provincial government has made some changes to the program, and if we are to believe their rhetoric and propaganda, everyone gets ABA, but that’s not true.
3. Regarding costs, there is no question that ABA is expensive and it is a huge investment.  However, when the Auton case was litigated, the plaintiffs provided evidence before the court in the form of a detailed study done by an accounting firm, of the costs of an ABA program versus the costs of providing social services to untreated autistic people throughout their lives. Guess which one is cheaper?  An untreated child will become an untreated adult and require a lifetime of support.  How much does it cost to keep an autistic person in a group home with lots of supervision?  We know it costs over $100,000 a year to keep a prisoner in jail.  In Ottawa there was an article in the paper last year about a guy in a secure room in the local mental hospital who had autism and was finally (!) placed in a group home.  The cost of keeping him in the hospital was over a million dollars a year.  The article further noted there were six other such “patients” in the mental hospital who were similarly waiting for a placement in a group home.  They were in the hospital because their families could not keep them at home anymore.  An investment in ABA up front in the child’s life has the potential to dramatically reduce those otherwise life-long costs.  The challenge is to make politicians take off the “short term” glasses they wear and put on the “long term” vision glasses.  Those who understand the issue will see the costs as an investment that is the cheaper alternative.  Politicians often use the reference to “long term investments” when they discuss things like infrastructure, so it is not completely foreign to them.

I hope the above is helpful.

Sincerely,

Andrew Kavchak

[Author]

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