[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,

Further to my recent message about previous tablings of Private Members’ Bills in Parliament to create a “National Autism Strategy” and the unfortunate lack of one being tabled since 2011 (as far as I know), I did some preliminary searching of the current Bills before Parliament.  The activity of scanning through the list of the current Bills before Parliament is a curious one.  The subject matter of the Bills are often revealed in the title and the range is sometimes fascinating.  The topics reveal issues that Parliamentarians believe are important enough to warrant federal government legislative activity.  While some address important issues, others seem to be “political” in the sense that they are meant to address a concern of some small sector of society.

The list of current Bills is available at:

http://www.parl.ca/legisinfo/Home.aspx?Language=E&ParliamentSession=42-1

And on the list you will find such gems as Bill-312, “An Act to Establish a National Cycling Strategy”.

http://www.parl.ca/DocumentViewer/en/42-1/bill/C-312/first-reading

The format of the Bill is very, very similar to the one recently tabled in the Senate to create a national strategy against domestic violence.  The Bill requires the most closely responsible federal Minister(s) to convene a meeting with their provincial and territorial counterparts and interested stakeholders, and develop a strategy.  Based on my experience after 25 years of working in the federal civil service, the willingness of politicians to develop and adopt a formal “strategy” to address some sort of problem is generally a good thing, because it means that the problem is one that the government recognizes needs to be addressed and an action plan needs to be implemented.  Obviously some strategies are weaker than others, and the stronger ones reflect a greater government commitment. However, even weak strategies can be changed and improved over time.

So….why is there no “National Autism Strategy” Bill in Parliament that our community could actively point too and lobby for?

I recently sent an email to one Parliamentarian who has been “autism friendly” for a long time and asked him about whether he or any of his colleagues would consider tabling such a “National Autism Strategy” Bill.  The reply I got:

“I will look at the  Bill proposal but knowing the way things work around here I am not sure if there is enough time to move on a private members bill…” and there was a reference to Parliament’s current session expected to end with the next election next year and the Parliamentarian’s term coming to an end, etc.

OK, so what does this tell us?  The Parliamentarian has not previously considered looking at such similar Bills either in the past or today, the multiple steps and legislative process to get Bills passed are discouraging, and the looming end of the Parliamentary session (next year) almost guarantees that the Bill won’t get beyond “First Reading”, so it ain’t worth bothering with in the first place.  Really?  So last week a Bill to address “domestic violence” was worth the effort of tabling, but not autism.  Gee, thanks.  And if the Parliamentarian in question is not sufficiently motivated to pursue such an initiative, what about suggesting it to other “autism friendly” Parliamentarians? Although I mentioned “other Parliamentarians” in my email, the Parliamentarian in question did not address the “colleagues” issue….in other words, none spring to mind and the effort of raising it with one (or more) to see if they may have an interest in pursuing such an initiative is absent.

I also pointed out recently that at the annual “Autism on the Hill” rally that the MC introduced Mike Lake as being a “tireless advocate for a National Autism Strategy” although I never heard him utter words of support for such a strategy and he not only previously voted against such a Bill such a provision in the past, but issued a statement denouncing the Bill. Well, someone brought to my attention something interesting.  Apparently, Mike Lake was one of the opening speakers at the recent “Autism Leadership Summit” in Ottawa (held at the same time as the annual “Autism on the Hill” rally).   It appears that during his speech Mike Lake made reference to the need for a National Autism Strategy.  If that is indeed true, it is the first time that I am aware of Mike Lake making such a statement.  I would love to see a transcript or video of the speech. If true, the clip should be posted on many websites and used to remind Mike Lake of his declaration.  To me, his apparent statement in that venue is interesting and reflective of an evolutionary dynamic.  It seems that while he was against a National Autism Strategy when he was first elected (perhaps, just a hunch here, due to his desire not to antagonize the party brass and ensure his continued “member in good standing” status with the party and caucus, etc).  However, the increasing pressure from the autism community over the past few years may have now made it a politically correct and necessary part of the political lexicon for politicians speaking to the autism community.  Speaking to a crowd, especially a special interest group, is a special opportunity for politicians to score points and obtain support from the community through the expression of support for the special interest group’s issue(s).  However, it always seemed to me that it was a classic act of political cynicism and hypocrisy to express support for a special interest group’s objectives to the group behind closed doors, and then ignore the issue, or say the opposite, in another forum or in public.

My favourite example was a case of a Tory MP in the Toronto area back in the mid/late 1980s.  The MP was being lobbied by pro-defence individuals who wanted Canada’s armed forces beefed up and more support for the NATO weapons upgrade initiatives.  He was also lobbied by the anti-defence community urging him not support military initiatives, etc.  Well, the MP’s office prepared letters to both camps stating his support for their cause, but the letters were  mistakenly put in the wrong envelope.  One of my pro-defence friends was a recipient of one of these anti-defence letters that was addressed to another group but inserted in an envelope addressed to him.  Needless to say, the MP in question was guaranteed not to get my colleague’s vote at the next election.

So now that it appears Mike Lake expressed support to a gathering of autism “leaders” for a “National Autism Strategy”, what is he waiting for to table such a Bill?

 

 

[Andrew Kavchak]

Hi Folks,

Just a couple of things to share…

Recently PHAC issued an ASD prevalence report suggesting that it was 1 in 66.

More recently the CDC issued another similar report indicating the report is 1 in 59. One report suggests it is a 15% rise, while another suggests there is no epidemic. Hum…

https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm

https://www.medicalnewstoday.com/articles/321633.php

https://www.vox.com/the-big-idea/2018/4/28/17295398/cdc-autism-rates-epidemic-diagnosis-vaccines-myth

Meanwhile, “wait lists” and endless “wait times” still plague the system in Ontario.

http://www.cbc.ca/news/canada/windsor/autism-parents-exhausted-with-long-waits-for-ontario-s-new-program-1.4636930

A while ago the Ontario government tried to reform the system and flip flopped when there was enough agitation and demonstrations by the autism community.   At one point the government wanted to lower the age “cut off” from treatment to five years of age (which was a real step backward).  Then they announced some unprecedented new funding for treatment for years, etc.  Many of us have heard that all before and did not believe any of it.  Well, there were massive waiting lists for access to treatment back in 2004 when the Auditor General issued a report critical of the whole system and its management. Then the same happened again and again in subsequent years.  It always seems that there are more than 1,000 kids or something like that on waiting lists for access to treatment.  Any suggestion that the system is “good to go” and “everything’s fixed” are put to rest with the latest news stories.

http://www.cbc.ca/news/canada/windsor/autism-parents-exhausted-with-long-waits-for-ontario-s-new-program-1.4636930

 

 

 

[Andrew Kavchak]

Hi Folks,

Question: is domestic violence federal or provincial? Did the framers of the Constitution back in 1867 stick a reference to non-gentlemen beating their wives as being something that falls under section 91 (federal) or section 92 (provincial)?  In fact, it does not matter, because whatever the constitution says, the parties can negotiate and agree to whatever they want.  Where there’s a (political) will, there’s a way…

So take a look at this…

http://www.parl.ca/DocumentViewer/en/42-1/bill/S-249/first-reading

Yesterday, (Tuesday, April 24, 2018) a new Bill was tabled in the Senate by the Hon. Fabian Manning (that’s “first reading”.  The “second reading” and some actual discussion of the Bill and what is proposes to do if it becomes law, is to take place in two days.

Bill S-249 is titled “An Act respecting the development of a national strategy for the prevention of domestic violence” and its stated purpose is: “The purpose of this enactment is to provide for the development of a national strategy for the prevention of domestic violence, following consultations between federal ministers and representatives of the provincial and territorial governments responsible for social development, families or public safety, as well as other relevant stakeholders.”

The Bill is pretty short, yet, it sets out a requirement and a process for the federal government to show some leadership on the issue of domestic violence, engage in consultations with provinces, territories and stakeholders, develop a “national strategy”, publish it, and then follow up and review it in two years, etc.

Another question: why has no MP or Senator tabled such a Bill in relation to autism? Well, in fact, over a decade ago Shawn Murphy, an opposition Liberal MP did that.  Bill C-304 was tabled in 2006 and the Bill was voted down when the Tories and the Bloc Quebecois voted against it.  However, since then, what?  Well, in 2010 Glenn Thibeault (NDP MP) tabled Bill C-504, and then in 2011 he reintroduced it as Bill C-219, but these went nowhere.  And he left Parliament and switched parties to become the provincial Minister of Energy in the current Liberal government.  And since 2011? No more attempts despite an election, and change of Parliamentarians and government in 2015.

And how about in the Senate?  Oh, I know, I know….they passed an “Autism Awareness Day” Bill that was tabled by Senator Munson.  But a Bill that would actually require the feds to do something I mean.  Senator Munson has stated that he won’t rest until there is a National Autism Stanrategy in place.  So why not table a Bill to get the issue on the Parliamentary agenda, provoke a debate on the Bill, perhaps refer it to the Standing House Committee on Health (which could study it and issue a report like the recent Pharmacare one which provides a 140 page reference guide on how to implement such a new program), and force a vote on the matter.  If Senator Munson won’t table such a Bill, how about the other Senators who recently hopped on the autism agitation bandwagon?

The organizer of the recent “Autism on the Hill” rally introduced Mike Lake as being a “tireless advocate for a National Autism Strategy”.  Why won’t he table such a Bill?  Why? How will he, and the other MPs who voted against Shawn Murphy’s Bill over a decade ago, vote on this issue of “domestic violence”?  Do you think he will issue another statement denouncing it as merely a “wedge issue” and bad law, etc.?  Or are those arguments about jurisdiction, etc. limited in their applicability just to autism?  And what about that other NDP MP who claimed there was a group of MPs who were non-partisan on the autism issue and support the cause?  What is he waiting for to table such a Bill?

[Andrew Kavchak]

Hi Folks,

Just some thoughts about the nature of the autism community and the issue of collaboration among various autism groups…

Although there is no question that a community that speaks with one voice and has one unanimously supported message is more likely to be understood and taken seriously by politicians, the autism community is one that is diverse and fractured.  This should not be surprising….although people with autism have so much in common, no two persons affected by the disorder are the same.  Many of them, and/or their parents, perceive their needs, wants and interests differently.

While some people (e.g., the people behind the Auton case that went to the SCC, the “Medicare for Autism Now!” folks, me, etc.) support the idea of Medicare coverage for ABA treatment for autism from coast to coast, others in the community are either neutral regarding ABA, or dead set against ABA.  This situation first struck me back in 2004 when I wrote a letter that was published in the Globe and Mail about the poor treatment of Canadians with autism by governments, and one “self-advocate” who “self-diagnosed” wrote a letter that was published in which she expressed completely opposite views and wrote “don’t pathologize us”.  I was trying to get help for people with autism who need help (e.g., my son), and here is someone who claims to have autism and does not want to be characterized as having a medical or abnormal condition (sorry, but the American Psychiatric Association and the DSM already did that a long time ago). 

So at the provincial level there are so many charities and “autism societies” that have historically claimed to be the “voice” of the autism community (I actually read that years ago in some document from the Autism Society of Ontario).  However, it eventually occurred to me when I read some of the submissions of the Ontario Autism Society (especially those to the provincial ministry of finance at budget time) that the reflection of the environment and situation that families with newly-diagnosed children (on waiting lists and not getting a dime’s worth of help – like the situation my family was in) were hardly well reflected or represented.  In fact, the submissions struck me as lame and sugar-coated.  Eventually, it occurred to me that not only were the charity-societies prevented from engaging in any significant lobbying due to Revenue Canada rules about charities maintaining their charity status and ability to issue tax deduction receipts, but some of the Societies actually received government contracts to do work.  It seemed to me that these two money-related problems may have turned the societies-charities into neutered lapdogs which did not want to “rock the boat” too much for fear of losing their charitable status or contracts. 

On top of it all, any clear pronouncement of support for any particular issue, whether a treatment, or a government program or service, would inevitably lead to criticism from one group or another, and perhaps a loss of membership, etc.  As a result, it seemed to me, the societies-charities were reduced to lowest-common-denominator type of activity, e.g., more “autism awareness” campaigns, etc.  

In contrast, some organizations want to lobby and accordingly adopt “non-profit” or other non-charitable status (e.g., FEAT BC, MFAN!, etc.)  I think our community owes such organizations a big debt of gratitude for speaking up on critical issues such as access to treatment. 

OK….so I came across something I find interesting.  Up until a few years ago the national autism group was generally acknowledged to be the “Autism Society of Canada”.  They evolved and merged with the Autism Foundation of Canada and then changed their name to Autism Canada.  They also joined with a few other groups a few years ago to found the “Canadian Autism Spectrum Disorder Alliance” (CASDA).  CASDA’s membership has grown over the years from a few founding members to quite a few organizations, groups and individuals. CASDA became a sort of umbrella group at the national level.  The more, the merrier, right?  Well, not necessarily.

In the past couple of years CASDA was involved in the creation of a proposal for the Canadian Autism Partnership (CAP), and their website still makes reference to it, even though the proposal has been totally ignored by the current government.  However, even though Autism Canada was involved in the creation of the CAP proposal, after the proposal was finalized, Autism Canada issued a statement that they were withdrawing from CASDA and their support for the CAP thing.  The reasons were elaborated on here:

http://www.marketwired.com/press-release/autism-canada-rejects-canadian-autism-partnership-project-2224019.htm

As far as I know, neither CASDA nor the people behind the CAP thing have issued a public reply addressing the three concerns of Autism Canada.  I may be wrong, but I have not seen any (if you know of any such reply please post a link(s) to any replies or responses).  I wish there would be a response because the issues raised (lack of financial disclosure, transparency, and concrete measurable deliverables) are important and the community should be aware of where the leaders and leading organizations stand on these issues.  

Every year now it seems that CASDA organizes some sort of “autism leadership summit” in Ottawa (and the annual “Autism on the Hill” event is at the same time over a lunch hour so participants can attend).

The most recent conference was over two days and included a variety of panels, including one titled “Collaboration in Action”.  The description was as follows:<b> “</b>Across Canada there are examples where advocacy groups, service providers and governments are working together to bring about system changes. Effective collaboration by multiple stakeholders is required to achieve broad system change. This session will highlight how stakeholder collaboration has informed the Ontario Autism Program (OAP). Panelists will provide an overview of how they brought about change and key elements of their success.”

http://www.casda.ca/summit-agenda/

I hope the panel, or some other panel at the conference, or perhaps during the Q&A period after, addressed the question of “non-collaboration in action” and the specific case of the withdrawal of support from CASDA and the CAP thing from a founding member and contributor (who happens to be national in scope).  It seems that this panel would have provided an excellent opportunity to address the issues raised by Autism Canada and CASDA’s (non?) response.  What does the CASDA reaction (or non-reaction) to Autism Canada’s withdrawal actually mean in terms of CASDA’s perception of its role and the future of the autism community’s efforts to lobby governments, etc.? 

As we now have a clear division at the national level in the leadership of the autism community, what are the two parties doing (if anything) to bridge the gaps and effectively move forward for the betterment of the community?  Do we need to set up an autism “truth and reconciliation” commission or what?  Or is the silence to continue with the issues being brushed under the carpet? Financial disclosure and transparency are important and fundamental to the democratic process and NGO activity.  I wrote to one of the panelists and inquired whether these issues were addressed during the conference. So far, no response.  I guess we could use a little more “collaboration in action”, and transparency, etc.

[Andrew Kavchak]

Hi Folks,

From yesterday’s Senate Debates (Thurs, April 19, 2018):
<h2 id=”12″>World Autism Awareness Day</h2>
<b>Hon. Wanda Elaine Thomas Bernard: </b>Honourable senators, I rise today to recognize World Autism Awareness Day, which was on April 2. Every year, organizations around the world celebrate the day by raising awareness and celebrating Autism Speaks’ international “Light it up Blue” campaign by shining bright blue lights in honour of all individuals and families affected by autism. Individuals everywhere wear blue to spread awareness and understanding of autism. Thank you to our colleagues who advocate for the ASD community, notably Senators Munson and Housakos for championing autism awareness and acceptance.

Honourable senators, there are many change makers in the ASD field who are currently meeting in our nation’s capital for the 2018 Canadian Autism Leadership Summit. Let us be part of the drivers for change and improve the lives of all Canadian children and adults who live with ASD.

The panel presentations have been both inspiring yet troublesome. In fact, a panel with Indigenous elders this morning spoke about significant disparities, especially in the North, that leave most Indigenous children and youth undiagnosed and more at risk for involvement in the criminal justice system.

The Public Health Agency of Canada provided a report summarizing information gathered by the National Autism Spectrum Disorder Surveillance System about Canadian children and youth in 2018, a first for Canada. This report provides figures with data separated by sex, gender, age and geographic location. These figures are very important to identify interest groups. However, there are huge gaps in this data.

Without being disaggregated by race, we cannot accurately assess how African-Canadian or other racialized groups are doing in comparison to White children and youth. Based on information from other areas of health, we know that African Canadians are likely to be impacted differently.

As I said this morning, we heard from an Indigenous panel that was truly heartbreaking.

In the United States, the Centres for Disease Control and Prevention has identified that African American children are diagnosed on average 18 to 24 months later than other children. This is an example of how data disaggregated by race can reflect the differing needs of marginalized communities.

If the data collected by the NASDSS had been disaggregated, we could see if Canada has a similar issue to the United States with later diagnosis. As we in the ASD field know, an early diagnosis makes all the difference with success of interventions.

Honourable colleagues, we are stronger together, and we can dismantle these systemic barriers and help impact the lives of individuals and their families now and in the future.

[Andrew Kavchak]

From the Senate Debates, Wed. April 18, 2018:
<h2 id=”8″>Autism</h2>
<b>Hon. Jim Munson: </b>Honourable senators, as I speak there is a major Autism Leadership Summit taking place at the Shaw Centre here in Ottawa. It has been going on for two days. As a caring, compassionate society, we are constantly pushing further to find the innovative and collaborative pathways to make a difference in the lives of people living with autism.

Honourable senators, it has been almost 11 years now since the Senate inquiry report entitled <i>Pay now or pay later: autism families in crisis</i>, and I feel even more strongly about the power of all of us together to change our society. It is about doing better together. It is about transformation, and we’re bringing Canadians to new perceptions about seeing more ability, rather than disability.

Through the hard work of parents, autism advocates and enlightened policy and political players, the autism landscape in this country is rich with ideas, energy, innovation, initiatives and solutions. The level of awareness of autism in Canadian society is ever sharper. Health systems are developing and training specialists and multiplying resources for services — that is, if you happen to live in the right community in Canada.

The autism community is asking the federal government to lead an integrated approach to bring hope to individuals with autism and their families. Over the last 10 years, rather than work in isolation, families, groups and communities began to talk to one another, to exchange ideas, to create, to strategize. It was obvious that one voice would be more effective to speak and to be heard by governments and other stakeholders.

That voice has triggered many initiatives under the previous Conservative government, and, under this present government, we’ve witnessed, over the last few days, a report from the Public Health Agency, for the first time ever, on key statistics for autism in this country. I want to congratulate the government for doing that. Also, it will provide evidence-based data needed to inform policy and programs. I hope the two new programs in Budget 2018 will be a new beginning of a new national autism strategy.

What does that look like? We’ve talked about this here in the Senate. It names the partners, what their role is and how they need to work collaboratively. It recognizes federal-provincial-territorial jurisdictions and the areas of that collaboration. It gives meaning to scientific research. It defines what federal leadership is. It names the gaps in policy and funding. It highlights best practices in all of the multi-sectors.

A national autism strategy is a pathway to address these complex needs and involve multiple sectors and partners — governments, clinicians, practitioners, researchers, community-based support organizations and businesses. It inspires government organizations from health, mental health, education, social services, justice, employment and housing, all working together around common understanding and goals.

A national autism strategy, honourable senators, is a statement of leadership. We can make a difference, but we have more work to do, a lot more. I would like to invite honourable senators to a reception at McDonald House this evening, between 5:00 and 7:00, where you’ll meet the leaders in autism in this country.

<b>Hon. Senators: </b>Hear, hear.

[Andrew Kavchak]

Hi Folks,

Well, I checked out the Hansard transcripts of what has been said in the House so far this week and a number of the government MPs who have been talking about how great the budget is have been adding short references to the fact that they are also spending “…$20 million on autism”.  They don’t elaborate, but the newly-added reference to autism spending in the list of accomplishments seems to suggest that they feel they can check off that item on the list as being “done”.

Today there was the annual “Autism on the Hill” gathering on Parliament Hill.  I did not go, but I watched the video of the 25 minute event on the internet.  My own view is that while these annual events (which have been taking place since 2012) provide a great opportunity to educate attending politicians about public policy gaps and what is needed for the community, these opportunities are always missed. Keep in mind that today, the Standing Committee on Health of the House of Commons issued a report titled “Pharmacare Now: Prescription Medicine Coverage for all Canadians”.  The report is available here:

https://www.ourcommons.ca/content/Committee/421/HESA/Reports/RP9762464/421_HESA_Rpt14_PDF/421_HESA_Rpt14-e.pdf

What do they recommend?  Lots of stuff…including…get this….expansion of the “…Canada Health Act to include prescription drugs dispensed outside of hospitals as an insured service under the Act.”

This is huge.  The politicians recognized that sick people need prescription medicine and sometimes it is simply too expensive.  As a result, these federal politicians studied the matter and are now recommending the changing of federal legislation relating to Canada’s Medicare, that would make coverage for prescription drugs required in every province by law.  This is rather stunning.  Mike Lake and so many other politicians have been against our community’s initiative asking for amendments to the Canada Health Act (CHA) to include ABA for autism treatment in Medicare from coast to coast on the basis that it is up to the provinces and that the feds have no business making any such amendments.

Back in 2007 Mike Lake even issued his “Media Statement” which provided his reasons for voting against a Bill that would have done precisely that. An annotated version is available here (I don’t think you can find his statement on his website anymore – at least, I can’t):

https://featbc.org/downloads/FEATBC_release_02_26_07.pdf

The proposed amendment to the CHA, Mike Lake wrote, would change “…the entire meaning of the document. It would set a precedent that would eventually undermine the entire Canadian health care system when taken to its logical conclusion.”

Have you ever heard such nonsense? Wait!  There’s more!  He went on to say “Under the Canada Health Act, the provinces are clearly responsible for decisions on which medical treatments they will fund. If we are to maintain the integrity of the Act, only the provinces can make those decisions.”

So…given that the risk of this precedent that is now being proposed by the Standing Committee on Health, which involves a federal amendment to the CHA which would expand coverage to include a completely new medical treatment, could undermine the integrity of the CHA and the entire health care system across Canada, how long will it take before Mike Lake issues another statement which is consistent with the position he expressed in 2007 and is opposed to this recommendation of the Standing Committee on Health?  I hope some journalist will ask him for his views on the new report and whether he intends to issue a critical media statement to demonstrate his consistency.

So today there was also this “Autism on the Hill” event.  There were six speakers.  The first was a lady by the name of Suzanne Jacobson who organizes these things and acts as the MC.  A few years ago I spoke with her before one of the annual events and suggested to her that the absence of any reference to the need for a National Autism Strategy was a shame.  Well, this time she mentioned it two or three times in her opening statement.  She described it as necessary so people don’t need to migrate across the country to get services.  Then there were three “self-advocates” who spoke. A 10 year old and two college students.  All three were introduced as having been diagnosed with autism, although one of the college students clarified that he was diagnosed with something on the spectrum (not necessarily autism – I think he said “PDD-NOS”).  Each was very eloquent and did not appear to me to be communication impaired.  What were their main concerns?  Keep in mind that the organizers and people like Mike Lake often suggest that we should pay more attention to the “self-advocates” because they are the representatives of those affected by autism, etc.  One spoke about the problem he had making friends. His recommendation was something along the lines of the creation of something like a “national friendship strategy” to help people like him make more friends.  The other college student made an interesting statement. He pointed out that he had difficulty with gross and fine motor skills as a child and his parents paid for lots of expensive therapy which helped. But did he suggest that the therapy should be covered by Medicare (and possibly supported with an amendment to the CHA)? Nope. He expressed gratitude for the support he received throughout his life and left it at that.

Then came the politicians.  First, Matthew Dube of the NDP.  He made three points. First, he thanked the crowd for showing up. Second, he asked the crowd to continue to come to the rallies.  Finally, he suggested that the autism community could continue to count on a group of Parliamentarians who work for the improvement of the situation for the autism community (he made a comment about fighting for the “beautiful light” of the autism community or something like that) and he mentioned that it was a non-partisan issue.  C’mon Matthew…..if you believe it is non-partisan you’ll believe anything.  The Liberal Party’s unwillingness to support the CAPP thing was partisan (it was not their idea and the possibility of supporting a Tory idea and allowing them to take credit was not attractive).  The Liberal Party’s unwillingness to even offer a reasonable critique of the CAPP thing was partisan and the only reason they got away with such disregard for the duty to debate is because they have a majority.  Personally, I’m way past the point of paying any attention to such meaningless and demonstrably incorrect statements.

Then Suzanne Jacobson introduced Mike Lake and described him as…get this….”a tireless advocate for a National Autism Strategy”!!!  Unbelievable.  I saw a post somewhere a while ago of one parent who spoke with Mike Lake and in the post the parent said that Mike Lake does not support such a thing (see some of the arguments from his “statement” above).  If Mike Lake has ever written or stated on the public record that he supports the creation of a meaningful National Autism Strategy with components that include things like Medicare coverage for ABA and federal funding contributions, I would be very interested in seeing the text or recording.  To my knowledge, there is no such thing.  Yet, Mike Lake appears to have managed to convince so many people that he is in fact an advocate for the community and a NAS.

So what did Mike Lake speak about?  Well, his son, and even though his son was not there, he encouraged the crowd to give a round of applause for his son.  Then he talked about ribbons. Every one was wearing an autism ribbon, and another green one for the Humboldt hockey team, and he was wearing one in the name of a young person in Edmonton with autism who went missing.  He then talked about the day of the terrorist attack on Parliament Hill in October 2014 when he was separated from his son for several hours and then at the end of the day his son was full of joy at being with his father, while everyone else was watching the news stories in sadness. He pointed out that his son, like others with autism, are honest and always give “high fives”, etc.  He concluded by saying that we are all much stronger together and he thanked those who help make the lives of people with autism better.

OK, so?  Any statement about what needs to be done, what he’s doing, what his vision is and what he plans to do to get there to really help the autism community?  Nothing.  And certainly no mention of “National Autism Strategy”.

Finally, Senator Munson spoke.  As usual, he was the only speaker who came close to addressing public policy issues.  He made a reference to the Humboldt team statistician who died in the tragic accident as having Asperger’s. He was a genius and predicted that the Las Vegas NHL team would go far this season (they just won the first round of the playoffs). Then Senator Munson talked about what motivates him….meeting people in the autism community. Then he pointed out that we are incrementally moving ahead (e.g., the PHAC report with Canadian prevalence rates, the budget allocation of $20 million for a website, etc.), but he stated that the movement is still too slow, there are still too many silos and there is a need to do more.  He stated that this is a human rights issue.  He pointed out that he has three more years in the Senate before retirement.

So there you have it…..no one mentioned the words “Applied Behaviour Analysis” (ABA), or “Intensive Behaviour Intervention” (IBI), or the need to expand Medicare to include autism treatment (as the Standing Committee on Health suggested this very day be done with respect to prescription medication outside hospitals), etc.  No one actually bothered to define a vision of what a “National Autism Strategy” could look like and achieve.  And no one mentioned the Liberal Party policy resolution about Medicare coverage for autism treatment.  But everyone clapped and the speakers all got hugs, etc.

I look forward to seeing what the government does with this report on pharmacare and whether there are any lessons for the autism community.  One thing that clearly stands out is the need to get autism treatment funding on the agenda of the House of Commons Standing Committee on Health.  In the past I’ve written to the committee chair and members many times with the proposal, and was lucky to get “sorry, we’re too busy with other stuff” type of responses.  Perhaps some of those (non-partisan) MPs could help us with that.

 

[Andrew Kavchak]

Hi Folks,

So Parliament resumed sitting yesterday after a long break and tomorrow there will be another “Autism on the Hill” annual rally on the steps leading to the Centre Block.  According to the “Autism on the Hill” website, the speakers will include two college students who are “self-advocates”, and the usual political suspects, including Mike Lake and Senator Jim Munson.

In today’s Ottawa Citizen Senator Munson has an op-ed published about what a “National Autism Strategy” can do.

Munson: Here's what a national autism strategy can do

This is interesting…Senator Munson ends his opinion piece with the statement “Let us all speak in one voice”.  Yet, he will be sharing the stage again with Mike Lake who, as far as I know, has never actively lobbied for a “National Autism Strategy” and, as far as I know, has never actually said the words in public (at least not with any clear corresponding expression of support for the concept).  The other “self-advocate” speakers may suggest that they support the idea of the creation and adoption of a National Autism Strategy, but I have yet to hear one of these “self-advocates” advocate for the adoption, for those who could benefit from it, of ABA/IBI either as a treatment in the public health insurance system (Medicare) from coast to coast, or as a teaching technique in the education system.  I support whichever voice advocates for that….and as far as I can tell, a few voices on the Hill tomorrow probably won’t even mention it.   I’m not sure whether I will attend the event.  I have in the past a few times and always felt afterwards like someone had let the air out of the balloon.

[Andrew Kavchak]

Hi Folks,

What do you get in a free and democratic society when you mix a problem (e.g., autism and the need for help) with government indifference (or the usual lip service)?  A Human Rights Tribunal complaint!

The Montreal Gazette published an article online today following a press conference by a group of parents.  The stories in the article hit home.  Many of us have, and continue, to share the same experiences.  What is heart-breaking, among many other things, is that the Premier of Quebec is a doctor, the provincial government took a long time to “review” autism programs and services and then to announce what was supposed to be an improvement.  Notwithstanding the historic claims of the separatists that everything is fine in Quebec for the autism community (which they made quite clear when voting against initiatives in the House of Commons to establish a National Autism Strategy), what this story demonstrates (yet again) is that the facts and reality are quite different on the ground from the fairy tales that some politicians would have us believe.

Will the federal government’s recent budget announcement of $20 million to create a website and fund anti-stigma autism awareness campaigns provide any relief or reasons for hopeful optimism?  How about PHAC’s recent report about the prevalence rates, which obviously suggests that these parents are not alone…will that help move some politicians and bureaucrats to take another look at the situation?  How about the recent Autism Canada report about the fate of adults with autism….will that help somehow to open some eyes in provincial capitals and Ottawa about a long-time brewing crisis that is in need of an urgent concerted national effort to finally allocate appropriate resources and provide the programs and services that would befit a free and democratic (and wealthy G7) country?

Over a week ago a tragedy took place in Saskatchewan where a junior hockey team on a bus was involved in a terrible accident.  The whole country rallied to express solidarity with the survivors and the families of the victims.  The grieving was national in scope, and even had international dimensions.  The whole situation was, and is, very sad.  But there is some comfort in knowing that the little community of Humboldt is not alone and that the country can sometimes engage in behaviour that makes us all feel like we are on the same team.  To me, those parents of children with autism who have struggled to do their best to provide for their children and who have also stepped up to advocate and lobby and pursue legal avenues to better the lives of the members of our community are heroes.  Undertaking a court case ain’t easy. There have been many cases over the years in the courts and human rights tribunals across the country.  The leader of the pack was the B.C. case of Auton, which went all the way to the Supreme Court of Canada in 2004.  The families in that case sacrificed a lot over many years to pursue the case, which could have benefitted everyone from coast to coast.  I wish these parents in this new Quebec Human Rights Tribunal case good luck and all the best, as I suspect many, many other parents in the community across the country do too. 

Parents to file human rights complaints over lack of autism services

 

 

[Andrew Kavchak]

Hi Folks,

On April 7, 2018, CBC posted (and presumably broadcast) another interesting story about autism with mixed messages.  I know how some people in the autism community understand and interpret these types of news stories, but I wonder how the Canadian public (voters) interpret the meaning of these stories.

http://www.cbc.ca/news/canada/british-columbia/parent-pushes-for-more-specialized-school-support-for-kids-with-autism-1.4605826

In this story, it appears that one parent who is also a board member of an autism organization, is advocating for the use of ABA in schools by school boards to help teach kids with autism.  Sounds good!  I fully concur.

And then there’s a reference to the federal government’s recent budget and the announcement that the feds will spend $20 million.  And the article concludes by stating: “With the new funding, PAFN is hoping to expand and open more hubs around the Lower Mainland to create a broader network of support.”

So….are we good?  A parent is advocating more ABA, the federal government’s recent budget announced funding, and the autism organization in question will be getting some of the money and plans to “expand” and “open more hubs” and broaden the “network of support”.  If I had no experience with autism, I would read the article and think that the feds are doing a good job by addressing the issue.  Yet, based on my experience, the story frustrates me because of the mixed messaging and possible misunderstanding.

ABA in schools for kids with autism is one thing, while the federal funding of a website (or the apparent expansion of an information centre network) is another.   Yet, these things get muddled together, along with the message that the feds are funding it in the recent budget (presumably because they reasonable politicians reacting to reasonable requests from the autism community) and therefore there is reason to be “hopeful” for a brighter future.  However, to address the parent advocate’s issue, it is the school boards that need to hire more staff that are trained in the use of ABA, and the article seems to suggest that the school board is comfortable with their “holistic approach” and has no plan to change.  So….will the federal funding, new website, new info centres, etc. help to expand the use of ABA in schools?  Perhaps I’m missing something, but I just don’t see the connection.  The net result is that here is a media story which, instead of leaving the average reader concerned that there is a problem to address, it leaves them with the suggestion that the feds are taking care of the funding and people on the ground are taking care of business and all is well.  At least, that’s my impression.  But I will be first to admit that I may be wrong.  Maybe the average reader will focus on the beginning and take away the idea that there is a need for ABA in schools for kids with autism.  Maybe.

[Author]

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