[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,

Well, it is 2019.  Anything new?  Anything different?  Hard to tell.  Back in 2004-2007 I organized a number demonstrations in from of the Ontario Provincial Premier’s constituency office here in Ottawa (Dalton McGuilty, oops!  I mean McGuinty).  I remember at one of the rallies an opposition Conservative newly-elected MPP by the name of Lisa Macleod showed up to give a speech in support of kids with autism who were on waiting lists for ABA treatment, etc.  At another rally some fellow parents came from Toronto, including the McIntosh family who went on to create the “Ontario Autism Coalition” which has done a super job over the years keeping the autism file on the government and media agendas.

So last summer there was a provincial election and now…lo and behold….Ms. Macleod is the Ontario Minister for Children, Community and Social Services (the Ontario provincial autism program is not handled by Medicare, the Department of Health, and the Minister of Health). So she’s been in the job since last summer.  What’s happening?  Well, here’s an article about her visiting the Niagara district where there are apparently over 1,800 kids on a waiting list for treatment.

https://www.stcatharinesstandard.ca/news-story/9144722-minister-wants-to-address-autism-waiting-lists/

The article came out on January 25 and suggests that there are 40,000 children with autism in Ontario, of which 8,000 are getting treatment, and 23,000 are on a waiting list.  Ms. MacLoed is quoted as saying that the government’s goal is to “clear the waiting list”.  She did not apparently indicate how the government is going to do that, apart from a reference to greater efficiency.

Surprise, surprise!  On the same day (January 25) the Toronto Star published an article by Laura Kirby-McIntosh with a proposed “action plan” for the government.

https://www.thestar.com/opinion/contributors/2019/01/25/an-action-plan-to-for-ontarios-autistic-children.html

The article begins by stating that there are now 30,000 kids on the wait list for the Ontario Autism Program’s treatment services.  So, which is it?  23,000 or 30,000?  The article lists three things the government should not do, and three things it should do.  Perhaps one of the things would be to get a better grip on the size of the waiting list.

Given that the provincial government recently announced that they are considering removing the caps on class sizes in schools (see link below), I’m curious about what the Minister MacLoed will do. In the meantime, I have a strange feeling in my stomach….what’s it called again?  Oh, yeah….nausea!

https://www.cbc.ca/news/canada/toronto/ontario-considers-removing-kindergarten-and-primary-class-size-caps-1.4990387

[Andrew Kavchak]

Hi Folks,

Just over two weeks ago I posted a message with links to stories in the media about the autism programs and services in Quebec and Alberta being inadequate according to a number of parents (“failing”, “broken system”, etc.).

Now the Ottawa/Ontario story has again come out in the media here with a title that says it all: Ontario autism program “woefully broken”.

https://ottawa.ctvnews.ca/parents-of-children-with-autism-hear-ontario-program-woefully-broken-1.4250329

The story contains the standard lines that many of us have seen many times over the years, e.g., wait lists getting longer, no solution in sight, new government promised action, nothing happening, no one knows what’s going on, Minister looking into it, situation getting worse, etc.

Le plus que ca change, le plus que…same old, same old.  What will it take for those with legislative power and their hands on the public purse to address this crisis? What?  I really would like to know.

[Andrew Kavchak]

Hi Folks,

As many of you who read my posts have known for a long time, I’ve been thoroughly perplexed by what I guess I would call the “Mike Lake phenomenon”.  I would describe the phenomenon as being one where a politician makes a lot of brouhaha noise about autism, without saying a word about public policy, and somehow manages to get many organizations and people (in and out of the autism community) to praise him for his “tireless national autism advocacy”, etc. Recently, one parent brought to my attention that they wrote to Mike Lake’s office and specifically asked what he advocated for and whether he had a written statement (either from a speech or a standard form letter) which outlined what he actually would like to see governments do.  Mike Lake’s twitter account revealed recently that he met with several Ontario provincial government Cabinet Ministers and provided them with autism-related “advice”.  What was that advice?  Neither he, nor the offices of the Cabinet Ministers he spoke to, replied to that question.  While Mike Lake’s office offered to “schedule a call” to talk to the parent, his office did not forward any statement from him in writing.

So what does Mike Lake, the politician and federal “Privy Councilor” actually promote and talk about?  My reviews and assessments of his “autism awareness day” speeches, etc. all have two characteristics: (1) talking about his son, and (2) no talking about the needs of the autism community and what government public policy initiatives need to be implemented to help improve their lives.

Yesterday Mike Lake apparently spoke at the “MIND Institute” at UC Davis in Sacramento as part of their “Distinguished Lecturer Series”.  He posted a picture of himself and his son flying to the event.  Even though his son is non-verbal, Mike Lake frequently brings his son to stand next to him while he speaks. And again….what did he talk about?  As a politician with over a decade of experience, including sitting around the Cabinet table, is there any comment he may have about how governments are doing and what more they could, or should, be doing?

Well, the UC Davis organization posted a “bio” sheet about Mike Lake which includes an interesting description about the expected content of his lecture, titled “Expect More – An Autism Adventure”.

The document is available here:

https://health.ucdavis.edu/mindinstitute/videos/images/dls/lake-bioabstract.pdf

I copy below the paragraph describing the lecture.  It is revealing.  Mike Lake seems to have adopted the role of being an autism motivational speaker of sorts.  There is no mention of public policy, government action (or inaction), what governments are doing right and wrong, or what are the next steps that governments should take, etc.  In other words, his unique role and perception as an insider politician in governance and legislating, etc. is completely ignored and cast aside.  While I can’t think of anyone in the community who is against “feel good” stories and motivational pep talks, his concerted effort to avoid speaking about what he would be more authoritatively qualified to speak about (namely, a politician speaking about public policy) is … well… (you can fill in the blank here).

The description of what Mike Lake has to say:

“Presentation Title: Expect More – An Autism Adventure

Mike Lake is the Canadian Member of Parliament for Edmonton-Wetaskiwin, currently serving his fourth term. He has two children, a son Jaden, 22, and daughter Jenae, 18. The Lakes have been active supporters of autism organizations, families and individuals around the world, while sharing their story of life with Jaden, who has autism. His mission is to challenge us to think differently, not only about people with autism, but about everyone we connect with. Mike has spoken to spouses of world leaders at the United Nations, 15,000 students at WE Day, teachers from across Canada, and thousands of university students. He has done a TEDx Talk and has had the opportunity to travel internationally, meeting with fellow elected officials from across the political spectrum, as well as leaders in the global research community. Mike’s presentation uses video from interviews and news stories centered around his son. Although Jaden is nonverbal, his story enlightens people in ways that words cannot. Mike takes us on a journey through the past eight years of Jaden’s life, demonstrating the power of inclusion as a key to unlocking otherwise undiscovered human potential. The clips, intertwined with Mike’s compelling story-telling, shape together a narrative that resonates with audiences of all ages and from all backgrounds. In the end, his goal is to use Jaden’s story to change the way we think about the people around us – their abilities, their challenges and the unique contributions that they can make to the great benefit of all of us. ”

So here we have it.  Mike Lake’s goal is not to use his position as a Member of Parliament to influence or shape government public policy and help create programs and services that the autism community need (e.g., getting ABA autism treatment covered by Medicare, etc.), but it is instead “to use Jaden’s story to change the way we think about the people around us”.  Did he have to get elected to do that?  I wish he would consider an alternative interpretation of the title of his presentation as I do indeed “expect more”.

[Andrew Kavchak]

Hi Folks,

Well, here we are…the last day of 2018.  I thought it was just going to be another day, but this morning while shaving and listening to the radio I heard something that made me burst out laughing and totally made my day.  I wonder if this story made it in the media out of the province and across the country, or did it just stay local.

Every once in a while I wonder about how our autism community recognizes its members who have stepped up and really done something useful that helped the community.  I don’t mean people like the head of the Autism Society of Ontario who has a paid full-time job which she and after years of putting in the “9 to 5” routine gets an Order of Canada medal from the Governor General (for apparently doing her job on company time, etc.).  How about others who become leaders and actually do something that inspires or motivates or actually gets some message across or indirectly (or directly) contributes to the improvement of the quality of life of people with autism….or that helps instill and strengthen some dignity in the community?  Years ago I gave Senator Munson an engraved trophy to thank him for his efforts to get autism on the Senate’s agenda. I also nominated Dr. Sabrina Freeman for an Order of Canada (and found out in the process what a sad political process that Order of Canada thing is).  However, in the news today I think there is someone else who deserves a special commendation and word of thanks.

“Who?” you ask.

A lady in London, Ontario, by the name of Elsbeth Dodman.

And what did Elsbeth Dodman do?

Well, Elsbeth Dodman is a 30 year old lady who “lives with autism” and “has long been an advocate of increased government support for others on the autism spectrum”.  So far so good, but here’s the item that made it to the news….Our recently-elected Conservative Premier of Ontario, Doug Ford, have often portrayed himself as a Premier “of the people, for the people” (you know…that whole “populism” thing, etc.).  A few months ago when GM announced that they were going to close the Oshawa plant, Premier Ford was reported in the media as saying that he supports the workers who were going to lose their jobs and he was going to “be there for them” and he was even going to give out his cell phone number so they can communicate with them.  On November 27 I even posted on this board a message about that and mentioned that I wanted his cell phone number too.  I never saw the number.

However, Elsbeth Dodman did.  And she called.  Not once.  But many times.  Many, many times.  So many times, in fact, that the Ontario Provincial Police (OPP) recently paid her a visit and told her to stop doing that.

I have not enjoyed reading a media story like this one in a long time.  Check this out:

https://www.cbc.ca/news/canada/london/doug-ford-phone-calls-1.4958771

Anyways, every once in a while I hear of someone who really deserves a hug and a “Thank you!”  Elsbeth Dodman is just one of those persons.  Way to go Elsbeth!!!

Happy New Year!

[Andrew Kavchak]

Hi Folks,

Well, earlier this year there was a provincial election in Quebec and a new upstart party (some sort of coalition about the future thing) won.  Will anything change for the families with children that have autism?  Time will tell of course, but the recent track record is…sad.  You may recall that the previous Liberal government in Quebec had a Premier who was a doctor and that the departments with responsibilities relating to autism programs and services spent a lot of time doing a “review” and planning for an “overhaul” of the autism programs and services.  Parents waited and there were delays, followed by protests in front of government offices and then a Human Rights Tribunal complaint, etc.  Yes, the government did announce something, but like so many other similar announcements, it seems to have become entirely forgettable.  So where are we at today in Quebec?  Well, how about the opinion piece by the mom of a child with autism that appeared in the Montreal Gazette on December 27, 2018, the title of which is self-explanatory: “Opinion: Quebec fails to meet the needs of children with autism”.

Opinion: Quebec fails to meet the needs of children with autism

Of course, we all know that the provinces across this country have a lot of room to improve their programs and services for the autism community.  Recently the CBC delivered this gem of a story (December 26, 2018) with another self-explanatory title: “Mother of adult with autism calls Alberta’s support system ‘broken'”.

https://www.cbc.ca/news/canada/calgary/calgary-mother-pdd-system-broken-1.4954777

I suppose some people may find some solace in the fact that the federal government has repeatedly announced throughout this year that it is spending $20 million on a website and anti-stigma type campaigns, but I have yet to find the website in question, and I suspect neither of the mothers involved in these stories have either.   Mike Lake MP’s Twitter account recently indicated that he met on two separate occasions with officials (Cabinet Ministers) from the newly-elected provincial government in Ontario and gave them “advice” about the autism file, for which they also tweeted out their thanks. Any ideas what his advice was?  Any guesses as to whether and when he plans to share his advice with the Quebec and Alberta governments?  Or would the fact that those governments are not “Conservative” make that unlikely?  So much for the non-partisan nature of autism public policy…<b></b>

[Andrew Kavchak]

Hi Folks,

Yesterday in the House an MP made an interesting statement relating to the disabled…

Monday, Dec 3, 2018

“International Day of Persons with Disabilities

<b>Ms. Kate Young (London West, Lib.): </b>

    Mr. Speaker, today is the United Nations International Day of Persons with Disabilities. This year’s theme, “Empowering persons with disabilities and ensuring inclusiveness and equality”, is at the heart of the Government of Canada’s commitment to build a Canada without barriers. In June, our government introduced Bill C-81, the accessible Canada act, which if passed will address barriers to accessibility in the federal jurisdiction.

Earlier today, the Minister of Public Services and Procurement and Accessibility announced that Canada has acceded to the optional protocol to the UN Convention on the Rights of Persons with Disabilities. This means that Canadians will have additional recourse if they believe their rights under the convention have been violated. These actions speak to our dedication to creating a truly inclusive and accessible Canada. Please join me in celebrating people with disabilities and the significant contributions they make to Canadian society.”

The UN webpage with relevant information is here:

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html

The UN Declaration is available here:

http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf

The “Purpose” of the Convention?

“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. “

Article 7 specifically addresses children.

“Article 7 Children with disabilities

1. States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.

2. In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right. “

Article 24 addresses “Education” and refers to things like “lifelong learning”, and “development…to their fullest potential”, etc.

Article 25 addresses “Health” which includes this gem: “( b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate,”

and this: “( e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, ” (note: our Canadian Medicare is in fact public health insurance, but does this paragraph refer to the actual offering of the insurance or the contents of the insurance policy?).

Info on Bill C-81 is available here:

http://www.parl.ca/LegisInfo/BillDetails.aspx?Language=e&Mode=1&billId=9990870

The text of the Bill is available here:

http://www.parl.ca/DocumentViewer/en/42-1/bill/C-81/third-reading

A Summary of the Bill is below. It appears that all references to “barriers” are limited to ones involving physical access (e.g., ramps for wheelchairs, etc.)  It seems rather stunning that Canada would have to wait until 2018 (2019 by the time it get Royal Assent?) to legally require all government buildings to have facilities that ensure accessibility by disabled people.  Of course, this requires the Ottawa bureaucracy to become fully engaged, with the corresponding expansion of the civil service to include a new standards development organization and an “Accessibility Commissioner”.  And with the creation of these new bureaucratic institutions comes the necessary annual report production (I remember working on the productions of annual reports in one of my previous government jobs and had to produce a report one year which was a real challenge to prepare because the specific office had done nothing all year). Finally, the Bill also provides for the designation of a specific week in the calendar to be designated as national accessability week. Thus, I suspect that by the time the next election comes the government party will claim that on disability issues, they can check the box…”done that”.  While these physical access issues are important and need to be addressed yesterday, what about access to ABA treatment under Medicare?  Why do disability rights not include that?  I am straining to hear the voices of the “National Autism Advocates” in the House raise the question…..if they have raised it, I have not come across it yet.

SUMMARY

This enactment enacts the Accessible Canada Act in order to enhance the full and equal participation of all persons, especially persons with disabilities, in society. This is to be achieved through the realization, within the purview of matters coming within the legislative authority of Parliament, of a Canada without barriers, particularly by the identification, removal and prevention of barriers.

Part 1 of the Act establishes the Minister’s mandate, powers, duties and functions.

Part 2 of the Act establishes the Canadian Accessibility Standards Development Organization and provides for its mandate and structure and its powers, duties and functions.

Part 3 of the Act authorizes the Accessibility Commissioner to provide the Minister with information, advice and written reports in respect of the administration and enforcement of the Act. It also requires the Accessibility Commissioner to submit an annual report on his or her activities under the Act to the Minister for tabling in Parliament.

Part 4 of the Act imposes duties on regulated entities that include the duty to prepare accessibility plans and progress reports in consultation with persons with disabilities, the duty to publish those plans and reports and the duty to establish a feedback process and to publish a description of it.

Part 5 of the Act provides for the Accessibility Commissioner’s inspection and other powers, including the power to make production orders and compliance orders and the power to impose administrative monetary penalties.

Part 6 of the Act provides for a complaints process for, and the awarding of compensation to, individuals that have suffered physical or psychological harm, property damage or economic loss as the result of — or that have otherwise been adversely affected by — the contravention of provisions of the regulations.

Part 7 of the Act provides for the appointment of the Chief Accessibility Officer and sets out that officer’s duties and functions, including the duty to advise the Minister in respect of systemic or emerging accessibility issues.

Part 8 of the Act authorizes the Governor in Council to make regulations, including regulations to establish accessibility standards and to specify the form of accessibility plans and progress reports. It also provides, among other things, for the designation of the week starting on the last Sunday in May as National AccessAbility Week.

Part 9 of the Act provides for the application of certain provisions of the Act to parliamentary entities, without limiting the powers, privileges and immunities of the Senate, the House of Commons and the members of those Houses.

Parts 10 and 11 of the Act make related and consequential amendments to certain Acts.

[Andrew Kavchak]

Hi Folks,

Remember the old soap opera decades ago that started off with a picture of a revolving globe and a strange voice would say something about sand in an hour glass and “…as the world turns…”?  Yes, indeed.  As the world turns…”le plus que ca change, le plus que ca reste le meme”.  Or as The Who would say “Meet the new boss, same as the old boss”.  So…in the news…

1. The journal “Pediatrics” published the results of a survey of parents in the U.S. which suggests that the prevalence rates for ASD is now 1 in 40.  Note: this is not the CDC talking, but worthy of note.

http://pediatrics.aappublications.org/content/early/2018/11/21/peds.2017-4161?sso=1&sso_redirect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token

2. And Global News is reporting about a case of one individual family’s situation that is reflective of a less-than-optimal situation in Ontario when it comes to long-term housing and care facilities.

‘Get him out of the hospital’: Mother of Oshawa man with autism pushing for long-term care for her son

So what do we do in Canada with disabled adults who have autism? Here is a case of a 22 year old man who occasionally has meltdowns and gets aggressive.  He requires supervision, including at night. He has apparently threatened to burn the family home down (when mom and his sister are sleeping). Well, in Oshawa (near Toronto), it appears that he has basically moved into the local hospital for overnight stays. This has been going on for months and who knows how long this will go on for.  But don’t have any concerns about there being any discrimination in this case.  Apparently, he is being treated the same as the other 15,000 people on the wait list in Ontario.  So that’s what parents of teenagers with autism have to look forward to as their children enter adulthood and families seek placements in long-term housing.  Imagine that….we can’t afford group homes for the disabled, but we can afford to give up a bed in a hospital for months (with no end in site), notwithstanding the recent report about hospital crowding getting worse in Ontario.

https://www.hqontario.ca/Measuring-Up

Yesterday GM announced it was going to close its car assembly plant in Oshawa and put 2,500 workers on the dole.  I heard Ontario Premier Ford’s soundbite on the news yesterday in which he said that he would be there to support the workers, he was going to go to Oshawa, he wanted them to know that he was going to be there for them, and that he would even give them his cell phone number.  I want his cell phone n,umber too.

 

[Andrew Kavchak]

Hi Folks,

Well here’s something that seems new…sort of.  One element of the study of public policy is the structure of the bureaucracies that are supposed to be doing something.  It is a frequent event in Ottawa that a new Deputy Minister (DM), or Assistant Deputy Minister (ADM), or Director General (DG), etc. will assume a position and one of their first acts will be to “reconfigure” the divisions which report to him or her, and attempt to justify the “reorganization” by making some reference to greater efficiency, effectiveness, etc.  Sometimes yes, sometimes no, but one thing for sure….chances are that the next DM, ADM or DG will feel compelled to change it again….and who knows?  Maybe they will inadvertently revert the org chart to what it looked like before!

Anyways, it seems that in PEI a provincial politician has been told enough times by parents of kids with autism that they have to lobby several ministries to get some service(s) and they are (perhaps) a little tired of it (presumably after being told “that’s not my department” a few too many times).  Accordingly, this PC MLA has proposed that the province create an “Autism Secretariat”.  The CBC is reporting that Sidney MacEwen “…would like to see a single cabinet minister responsible for overseeing all government services and supports for Islanders with autism spectrum disorder.”

https://www.cbc.ca/news/canada/prince-edward-island/pei-sidney-macewen-autism-secretariat-1.4917760

Well, unlike Mike Lake’s recent “Canadian Autism Partnership (CAP) Project” proposal which involved creating a new bureaucracy outside of government with no legislative mandate or authority, this Autism Secretariat proposal would be a reconfiguration of the existing bureaucracy dealing with autism programs and services and centralizing the ministerial responsibility in one Autism “Czar” Minister.

I hope the promoters of the CAP thing and politicians in other provinces are taking note.  Will any express support for the idea? Will any of the national autism organizations (e.g., Autism Society of Canada, Autism Speaks, CASDA, etc.) assess the proposal?  If it is a good one, will they draft a summary report proposal (as was done with the CAP thing and which some people obviously have experience), and use it to lobby other provinces to pick up on the idea?  It’s nice to sometimes reflect on the possibilities…

[Andrew Kavchak]

Hi Folks,

Here’s something different.  Over the years one the big obstacles that our community has faced in getting some leadership from the federal government has been the often-repeated argument that the autism file is a healthcare delivery issue which is entirely provincial and not federal jurisdiction (notwithstanding the legal, financing and contractual contexts, e.g., “health accords”, etc.).  However, every once in a while we see federal departments and agencies stepping pretty close to the limits of their mandates, and sometimes going beyond them in a demonstration of some degree of “doing good for Canadians”.  Whenever such initiatives are taken, I always wait to hear the chorus of politicians denounce the move as being inappropriate given our constitutional division of powers, but most often hear nothing but silence.

Case in point… on November 20, 2018, two MPs made rather interesting statements about an initiative of the “Farm Credit Corporation” and “mental health”.

“Mental Health

<b>Mr. Jati Sidhu (Mission—Matsqui—Fraser Canyon, Lib.): </b>

Mr. Speaker, agriculture is an exciting and dynamic industry that is full of opportunities, but it is not without challenges. I rise today to recognize the Minister of Agriculture and Agri-Food and Farm Credit Canada for raising mental health awareness within the farming industry. My riding of Mission—Matsqui—Fraser Canyon has a high concentration of farmers and it is important that both individuals and families receive support throughout stressful situations. I am pleased farmers will have improved access to wellness resources, with the FCC launching its mental health strategies guide. Mental health issues can affect anybody. It is important to have these discussions. I am proud to join my colleagues and the agricultural community in removing the stigma surrounding mental health.

Mental Health

<b>Ms. Karen Ludwig (New Brunswick Southwest, Lib.): </b>

Mr. Speaker, I rise in the House today to talk about an important issue facing Canadian farmers, mental health. I am the granddaughter of a cattle farmer and well know the pride, strength and independence demonstrated by our farmers.  I have heard first-hand from farmers in my riding of New Brunswick Southwest of the uncertainty, unpredictability and stresses of weather, market forces and wanting to pass the family farm on to new generations. The feelings of anxiety, stress, depression and isolation are not easy to share. It is time to break this barrier of stigma. There is no question we need our farmers. I am pleased the agricultural committee is completing its investigative study of the mental health and physical well-being of our farmers.”

This is interesting.  The FCC is raising mental health awareness. The FCC provides some resources, including a “mental health strategies guide”. It is contributing to the removal of mental health stigma. And…it  turns out, the “Agriculture Committee” is completing an investigative study of the mental health and physical well-being of Canadians who farm for a living.

For those who are interested, the FCC’s mental health publication is available here:

https://www.fcc-fac.ca/fcc/knowledge/wellness/mental-health-publication-e.pdf

I don’t doubt for one minute that farmers suffer stress.  Much of what they do and their success (or failure) is dependent on things that are beyond their control like weather, interest rates, insects and crop diseases, insurance programs, market demand and prices, etc.  But what is the mandate of the FCC?  It is outlined on their website at:

https://www.fcc-fac.ca/en/about-fcc/governance/public-policy.html

“FCC’s mandate is described in the Farm Credit Canada Act as follows:<i>The purpose of the corporation is to enhance rural Canada by providing specialized and personalized business and financial services and products to farming operations, including family farms, and to those businesses in rural Canada, including small and medium sized businesses, that are businesses related to farming. The primary focus of the activities of the corporation shall be on farming operations, including family farms.”</i>

I searched the words “mental” and “health” on the above-noted webpage where the FCC elaborates on its mandate and role and neither words show up. So…since when is “mental health strategy” a component of “business and financial services and products”?  I don’t hear any government or opposition MPs raising an objection on jurisdiction.  I have not come across any statements of objection from the Minister of Health that “mental health” is their department’s file and not that of agriculture.  So it must be OK, right?

Well, as a parent of a child seriously affected by autism, I can say with no hesitation that my family’s life and that of many other families that I know in a similar situation is also loaded with stress.  Even after all these years stress is still part of my daily existence and dealing with it is part of my daily challenge.  But after hearing all the opposition to federal government action on autism from people like Mike Lake, etc., I never even contemplated the idea that Health Canada or the Public Health Agency of Canada would create and issue a “mental health strategy guide for parents of kids with autism” that would include, among other things, tips on how to naturally boost your serotonin levels.  While the government does not seem to be going around handing out free anti-depressants to farmers, at least they recognized an issue and put something in writing that is supposed to be helpful.  And on the autism file? What? Still waiting…

On a different topic, “National Child Day” was the subject of a few speeches in the Senate this week.  While no reference was made to autism, there was a reference to reports and a recommendation to create a “commission for children and youth”.   I wonder if such a commission would consider whether access to ABA treatment was a “right” for children who need it.

[Andrew Kavchak]

Hi Folks,

Are you ready for this?

Another autism website!

But this one is different – it won an award, which was a few thousands of dollars directed to an autism charity.

The “Canadian Underwriter”, some sort of insurance industry news source (not to be confused with Canadian insurance “overwriting” – sorry I just could not help it), published a story today indicating that two brokerages in Ontario combined forces to help fund an online platform “that provides support and resources to the autism community” (https://connect.autismspeaks.ca/home).  The story is here:

Why these two brokerages rallied around autism

Does that sound familiar?  Twice this year the federal government announced the awarding of “more than $10 million” to two autism organizations to create a website that would do the same thing.  As far as I know, there is still no website and no announcement of a launch date.  The Auditor General of Canada issued a report his week in which his office evaluated the efficiency of numerous government departments and programs.  I wish someone would take a look at these autism budget provisions and report on what has happened. Where did the money go? What has the Canadian taxpayer got for the money spent?  It would be interesting to contrast these two projects.  How much money did the two brokerages spend to support the creation of the Autism Speaks platform?  How long did that take to get up and running?  Ah….I can hear it now….some bureaucrat suggesting that maybe the government should fund the creation of another autism website with a mandate of reporting on the features and effectiveness of other autism websites…

On a completely separate note, it was brought to my attention that on Mike Lake MP’s “twitter” thing that he “retweeted” a “tweet” from the President of York University a few days ago in which she thanked him for his recent visit to the university “…to share the story of your son Jaden and his experience with autism. We are excited that you will be back on campus in the new year to continue discussions about opportunities & challenges for families living with autism.”

Gee, that will be interesting.   I wonder whether Mike Lake has ever made a speech on the topic and posted the text on his website so that we can all have a good idea of what he perceives as being the challenges and how they should be tackled by governments. What will Mike Lake say about the challenges faced by the autism community?

Would he consider the lack of autism treatment in Medicare a challenge?

Will he talk about that and what should be done to improve the situation?

Any chance he might identify MPs who refused to table petitions on the subject (as he did when he gave me back the signed sheets I gave him) a problem?

Or what about parents of autistic children who get elected to the federal legislature, and use their position to talk about their child and family love every year on autism awareness day, but rarely, if ever, take advantage of their unique position to seriously hammer away at public policy gaps and campaign for federal leadership on the file?

Or what about MPs who vote to kill Bills that would require the creation of a National Autism Strategy?  I remember once getting a letter from one MP who said something along the lines of  “See?  Even a parent of a child with autism voted against this autism Bill” (referring to Mike Lake) so how can I be expected to vote for it?

I suspect his discussion of “challenges” won’t include any reference to ABA treatment in Medicare, etc.  Yet, I’d be willing to bet that the President of York U, of the professors in the disability studies department will still tweet out messages thanking him for his insights and leadership and outstanding advocacy for autism and that he’ll retweet it on his account (or whatever it’s called).

 

[Author]

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