[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]

And now in the Huffington Post…..

more on autism and this CAP project and the need for some federal leadership…

http://www.huffingtonpost.ca/andrew-kavchak/federal-leadership-autism_b_14105808.html

I just wanted to share with you all something that is really interesting (to me).  I got an email from a person who is the head of one of the “Autism Societies” who accused me of “causing problems”.  Apparently, according to this person, the CAP project,

1. does recognize the issues I raised (i.e., lack of access to treatment and housing accommodation),
2. won’t create a “big” bureaucracy,
3. will be composed of “focused experts”,
4. who will “hammer” away the provincial and federal governments and won’t let them ignore these priority two issues any longer.

Well, I kind of wish all that were true, but the fact is that none of that is reflected in the Executive Summary on the CAPP website.  Not one single issue is specifically referred to. Not one.  There is no mention of “hammering away” at governments in the report, and it is difficult to imagine any government signing on and agreeing to support something (and pay for it) that involves “hammering away” at itself. Governments tend to attempt to avoid “self-injurious” behaviour of that nature, although they do shoot themselves involuntarily in the foot and then stick it in their mouths on a not infrequent basis.

Regarding the bureaucracy issue, one thing that is of interest is this creation of a separate organization. I wonder why the Department of Health or Public Health Agency of Canada cannot be mandated with the creation of an ASD division… Does the government create such separate “partnership bureaucracies” for other disorders/illnesses/syndromes, etc?  It seems to me that it risks marginalizing, rather than mainstreaming, the ASD issues.  But that’s just my take on this. Who knows?  Maybe this proposed partnership bureaucracy could morph into a full-fledged department headed by…imagine…the “Minister of ASDs”.

 

[Andrew Kavchak]

Hi Folks,

Well, a few other publications have also published the article about this CAP project and the need for some federal leadership on the autism file, such as:

The Waterloo Record

http://www.therecord.com/opinion-story/7058741-it-s-time-for-ottawa-to-show-real-leadership-on-autism/

The Charlottetown Guardian

http://www.theguardian.pe.ca/opinion/2017/1/11/-autism–time-for-feds-to-show-real-leadership-.html

I hope that the Minister of Health’s advisors will take note, and that a genuine discussion recognizing the paramount issues and how to address them will take shape in the Minister’s office as she ponders how to deal with the “business plan” that was submitted to her in November.  If you wish to add your voice to the discussion, please feel free to send a message to the federal Minister of Health, the Hon. Jane Philpott, at:

jane.philpott@canada.ca

Cheers,

Andrew (Ottawa)

[Andrew Kavchak]

Hi Folks,

The article about the need for some federal leadership on the autism file has been picked up by another media outlet…

It’s time for feds to show real leadership on autism

Cheers,

Andrew Kavchak

 

[Andrew Kavchak]

Hi Folks,

I’m sorry that my previous post came out somewhat garbled. I copied and pasted, and there was no indication that anything in the appearance of the text would change once you click on “submit”. The former website had a “preview” type of function, where one might be able to correct such things, but this new website does not have that “preview” function. Sorry.

In any event, the commentary piece in today’s Toronto Star is available at:

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

Cheers,

Andrew

[Andrew Kavchak]

<p id=”yui_3_16_0_ym19_1_1483699181886_13807″>Hi Folks,</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_13807″>I had an “op-ed” commentary on autism published in the Toronto Star today.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>As some of you may know, the previous federal government did not do anything significant on the autism file and in 2015 they created a “working group” of “experts” to come up with some sort of “Canadian Autism Partnership” (CAP) plan.   The working group reported to the new federal Health Minister in November.  Minister Philpott now has to decide whether to accept it’s recommendations, which involve spending $19 million to create a new bureaucracy to engage in consultations and identify “issues”. In the commentary, I point out that the federal government could do a better job than that!</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>Cheers,</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>Andrew Kavchak</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_13807″ dir=”ltr” data-setdir=”false”>https://www.thestar.com/opinion/commentary/2017/01/06/more-bureaucracy-not-the-solution-for-autism-treatment.html</p>

<h1 id=”yui_3_16_0_ym19_1_1483699181886_14033″>More bureaucracy not the solution for autism treatment</h1>

<p id=”yui_3_16_0_ym19_1_1483699181886_14035″ dir=”ltr” data-setdir=”false”>Minister Philpott should consider how the federal government can demonstrate leadership, exercise influence, and put some money on the table to negotiate an accord with the provinces</p>

By ANDREW KAVCHAK

Fri., Jan. 6, 2017

As a parent of a child diagnosed with autism over a decade ago, I have watched the provincial and federal policy debates about autism with great interest — and even greater disappointment.

<p id=”yui_3_16_0_ym19_1_1483699181886_14159″>Although I used to believe one of the things that made Canada a great country was its publicly funded health care system, my son’s diagnosis opened my eyes to discrimination under medicare. There is no cure for autism, but we’ve had solid peer-reviewed evidence for decades that Intensive Behaviour Intervention (IBI) based on the principles of Applied Behaviour Analysis (ABA) can have a dramatic impact on the development of kids with autism.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14160″>Unfortunately, the treatment is not covered by medicare across the country.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14161″>In most provinces, IBI/ABA is not offered by ministries of health to those who need it, when they need and for as long as they need it. Programs, when they are available, are typically offered by ministries of social services instead and are extremely limited in their scope. They are also plagued by unconscionable wait lists — often years long.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14162″>My family spent over $40,000 on such therapy in the private sector in the first year while waiting for government provided treatment for our son. This was not sustainable for us nor is it for most Canadian families.</p>

<p id=”yui_3_16_0_ym19_1_1483699181886_14164″>More recently, when I inquired about placing our son in a group home facility in Ontario, I was told he could not be placed on a list until he’s 18 — and the average waiting period is a decade-long. Such dramatic waits for care facilities for adults with autism is replicated across the country.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14165″>So what kind of national leadership has the federal government demonstrated on this file? Not much so far. Recently they’ve been invited to embrace a new proposal.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14166″>In November, an expert working group on autism created by the previous federal government presented their final report to Health Minister Jane Philpott. A proposed business plan for a Canadian Autism Partnership (CAP) and a request for support, to the tune of $19 million over five years, was put forth. Philpott now has to determine whether to proceed with this “autism partnership model.”</p>

<p id=”yui_3_16_0_ym19_1_1483699181886_14169″>Unfortunately, CAP falls far short of offering autism families across the country any relief.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14170″>CAP gives an overview of their proposed structure (board of directors, national director, 11 employees, advisory council), a mission (address issues related to autism using a shared leadership approach), and a process (consultations, issue identification, agenda setting, problem-solving, mobilization, evaluation, measurement, monitoring) — but that’s about it. In other words, the CAP proposal involves the creation of another bureaucracy.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14171″>Those involved with the working group and their supporters may be excited about the prospects of a new bureaucracy, but many in the autism community — myself included — are shaking their heads in disbelief.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14172″>The last thing autism families need is more bureaucracy. What we need instead from the federal government is real leadership on autism — and we need it now.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14173″>The CAP proposal raises numerous concerns and risks. First, the plan does not mention specific gaps in policy or issues that need to be addressed on a priority basis, and it does not give concrete examples of how such issues could be resolved with the new model or when.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14174″>Second, we already have a public health agency and a federal department of health. Are these institutions and their provincial counterparts not adequate enough to conduct consultations, collaboration, problem-identification and political decision-making? The creation of a new bureaucracy will likely render the possibility of any concrete action to resolve policy and program gaps across the country even more remote.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14175″>Third, the CAP model does not actually provide the partnership with any authority to make changes to public policy, and it certainly won’t have the resources or legislative power to make meaningful decisions which will entail consequences on the ground.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14176″>Instead of a new bureaucratic structure, Philpott should consider instead how the federal government can demonstrate leadership, exercise influence, and put some money on the table to negotiate an accord with the provinces that would address three recurring issues as priorities for autism families: the lack of health care (medicare) coverage for autism treatment (ABA/IBI); the lack of ABI/IBI in the school systems and the lack of appropriate housing accommodation for autistic adults.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14177″>Where there is a political will to do something, there is a way.</p>
<p id=”yui_3_16_0_ym19_1_1483699181886_14180″ dir=”ltr” data-setdir=”false”><em id=”yui_3_16_0_ym19_1_1483699181886_14181″>Andrew Kavchak lives in Ottawa with his wife and two teenage children, one of whom has autism.</p>

[Andrew Kavchak]

Hi Folks,

Happy New Year!  At this time, the media is always full of news stories about the new appointments to the Order of Canada by the Governor General. I took advantage of the reminder to send the following follow-up message to his Lordship, or whatever he is…

Dear Governor General, I am the parent of a 15 year old boy who suffers from severe autism. He is non-verbal and requires care and supervision 24/7.  I have learned a lot since my son was diagnosed at the age of two about the needs of persons with autism, and the lack of helpful programs and services from Canada. I’ve also learned a lot about “who is who” in the autism community. In 2004 I nominated Dr. Sabrina Freeman to your office for an Order of Canada to recognize all the outstanding work she has done for the autism community in Canada.  Two years later I was informed that she was not approved for an Order of Canada, but that a Meritorious Service Award, or something similar was possible. I therefore asked that the nomination be considered for that award.  Now, here we are, January 1, 2017, a full 13 years since my initial submission, and I have not received any information about the status of the process or final decision. Face it, your “Chancellery of Honours” office is hopelessly dysfunctional.  I have written to you and your predecessors on several occasions over the past many years. I write again now and ask: “When do you intend to award Dr. Freeman the recognition that is long overdue?”

Cheers,

Andrew Kavchak

Ottawa

 

 

 

[Andrew Kavchak]

Hi Folks,

In my previous post I made a reference to the Minister of Justice…it should have been the Minister of Health. Sorry for the error and any confusion.

Regarding the CAPP Executive Summary, I just took a look at it, and wrote the following…

Here are some comments about the Canadian Autism Partnership Project (CAPP), and the information about it (including the business plan executive summary) on their website at:

http://www.capproject.ca/index.php/en/

<i id=”yui_3_16_0_ym19_1_1482318697787_131907″>Summary of the Summary:</i>

1. The home page claims that “<i id=”yiv8819991563yui_3_16_0_ym19_1_1482318697787_6821″>Canada has spoken. Our consultations have resulted in unified agreement that moving forward with a Canadian Autism Partnership is essential if we are to collectively improve better outcomes for individuals and families living with autism.</i>”

The page goes on to suggest that the solution is the “Canadian Autism Partnership Model”.

2. In November, 2016, the federal Health Minister was presented by the “Working Group” with a “business plan for a partnership model”. The Executive Summary of the business plan is on their website. It is 12 pages long.

3. At the beginning, the plan has a “vision” and “mission” (to make things better, etc.).

4. At page 1, the plan is somewhat described as creating “efficiencies” which include “a national platform for multi-sectoral collaboration”, “knowledge translation”, and “broader influence on the research agenda”, and of course, a strategy to address the “specific needs” of the indigenous population.

5. Page 3 has a diagram which reflects the “CAP Collective Impact Process”. <i id=”yiv8819991563yui_3_16_0_ym19_1_1482318697787_114175″>(Comment: It is in fact a variation of David Easton’s 1950s “Systems Theory” which originally described all bureaucratic processes as involving three elements: “input – process – output” and of course the output would be “feedback” or new “input” which would keep the process going in a self-sustaining perpetuity type model.  Ralph Boren (of “When in Doubt, Mumble!” fame) subsequently updated the model to better reflect government bureaucratic procedures “hushput – mushput – flushput”.)</i>

The CAP diagram has all the keywords: stakeholder, collaboration, complex issues, input form, agenda setting, engagement, “problem-solving(!), evaluation, measurement, monitoring, etc.

6. Page 4 has a reference to “Complex Issues Initiative (CII)”.

7. Page 5 addresses the “CAP Accountability Structure” which includes reference to a “Collective Impact Framework”, a Board of Directors, a National Director, an Advisory Council, Stakeholder Groups, a team of 11 staff members (they call these “FTE” – full time equivalent) to handle things like administration, finance and “engagement with Indigenous Peoples”.

And the cost? $19 million over five years.

<i>Comments and Concerns:</i>

The CAP business plan document is a “high level” (i.e., extremely general and vague) document with little details and specifics.  While the overall goal of trying to improve the lives of Canadians with autism (and their families) is certainly noble, worthwhile, and overdue, this document does not seem mention any of the specific issues that need to be address or give any concrete example of how they could be resolved in any reasonable time period.

The primary big issues facing the autism community have been known for a long time and are easy to identify. They include:

a) the lack of healthcare (Medicare) coverage for autism treatment (ABA/IBI),

b) the lack of ABI/IBI in the school systems, and

c) the lack of appropriate housing accommodation for the adults.

The issue of healtcare was high profile when the Auton case was heard by the Supreme Court of Canada in 2004. That was a long time ago and the case had been ongoing since the previous century.  In Ontario, the Deskin-Wynberg case raised the education issue and the SCC refused to hear an appeal. The housing issue is regularly in the media, and includes absolutely tragic stories such as the cases of parents killing their own children and themselves when they abandon hope.

None of these issues were mentioned in the CAPP executive summary and certainly no discussion of how CAPP would help address these problems in any concrete way.

Do we not already have adequate institutions for consultations, collaboration, problem-identification, and political decision-making across Canada?  Is it necessary to create new institutions and positions with budgets and bureaucracies?  Do other disorders, diseases, illnesses, syndromes, etc. have a similar model?

There are several problems and risks with the adoption of this proposed plan. One is that the bureaucracy will be expanded and any concrete action to resolve the public policy and program gaps that currently exist will become even more remote.  The issues already identified by the community will have to go back to the drawing board and start over at square one…this will not only delay things, but there is the risk that key and primary issues (such as the three listed above) will be side-tracked by other issues, which may (or may not) be of varying levels of priority (as perceived by different stakeholders) may result in further delays and confusion about what is really important and what is less important.

Where there is a political will to do something, there is a way.  When the PM and the Premiers and the Health Ministers, etc. “want something”, they can make it a priority (even a “legacy issue”) and make things happen. I was a federal civil servant for 25 years. I’ve seen it happen in several departments.

One risk (and problem) is that the creation of a new bureaucracy is that it makes the ultimate resolution of the big problems more difficult, but it gives the impression that something is being done, when in fact, at the ground level, nothing changes.

I would much more prefer a “business plan” that identifies the key problems and outlines how they can be addressed and resolved, through appropriate political decision-making and the allocation of resources,….now.

Personally, I have been protesting on Parliament Hill, on and off, for a National Autism Strategy, that would clearly identify the problems, and provide the public policy and programs to fix them. I believe the administrative bureaucracy to do these things already exists. The only reason these key problems are not being directly addressed is because of the lack of political will.

Those are just my own thoughts at this time (December 21, 2016).

Sincerely,

Andrew Kavchak

Ottawa

[Andrew Kavchak]

Hi Folks,

Well, more stuff in the House of Commons to scratch our heads about.

On Tuesday, December 13, 2016, there was the exchange below between Mike Lake and the Minister of Justice about…an “expert working group” and the creation of a “Canadian autism partnership”… The discussion was so important that the Speaker of the House appeared to cut off the Minister after the usual 60 seconds (or whatever the limit is before the microphones are shut off).

All we want is Medicare coverage for autism treatment, and reasonable supports for adults with autism. Here in Ontario I just called our provincial offices to inquire about a group home facility down the road for my teenage son and was told that once we place him on the “waiting list” when he will be 18, the average “waiting period” is 7-10 years before a spot becomes available.

Why can’t these questions be directly addressed, instead of creating more committees and alliances, etc…?  Have we not had enough consultations?  Is this how the governments deal with all other diseases, disorders, conditions, syndromes, etc…?

You can find out more about Lake’s proposed autism partnership at: http://www.capproject.ca/index.php/en/about-capproject/project-objectives

Perhaps I am missing something, but in the objectives, there does not seem to be anything concrete apart from setting up some sort of permanent state of consultation.

Although several people joined me in 2004 in protesting outside the Ottawa Conference Centre while the PM (Martin) and Premiers were negotiating a Health Accord, they did not include any reference to autism treatment and services in Medicare. Over the past few days the PM (Trudeau) and the Premiers were again discussing health funding, and the media reports that there was no agreement.  It does not seem that autism was on their agenda either.

Cheers from Ottawa.

Andrew Kavchak

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

Mr. Speaker, in our balanced budget of 2015, Prime Minister Harper and finance minister Joe Oliver established an expert working group tasked with the creation of a Canadian autism partnership to support those living with autism, their families, and caregivers. The current leader of the opposition, who was then health minister, officially launched the working group that summer. This world-leading team of Canadians has completed its work and reported back to the Liberal health minister with a business plan and a request for support

Can Canadians living with autism and their families count on the minister’s support for this important initiative?

<b>Hon. Jane Philpott (Minister of Health, Lib.): </b>

Mr. Speaker, I thank the member opposite for his very important work on this matter.

He certainly knows that autism spectrum disorder has a significant and lifelong impact on individuals and their families. We have made significant investments in this area, for instance, through the Canadian Institutes of Health Research. The government has invested more than $27 million on direct research related to autism in the last five years.

We are committed to working with all partners to help Canadians with disabilities to participate in our society, including work with the Canadian Autism Spectrum Disorders Alliance. They bring the perspective of those living with autism and their families.

I have received the proposal indicated by the member, to establish a Canadian—

 

[Franca Pastro]

Signed and shared!! Thank you, Andrew.

[Andrew Kavchak]

Hi Folks,

I just found out about this online petition on the Parliament of Canada website which is open until February 15, 2017.

It can be found at: https://petitions.parl.gc.ca/en/Petition/Details?Petition=e-596

Please consider signing (registering your support) and spreading it around.

Cheers,

Andrew

The Petition reads as follows:
<h2>Petition to the Government of Canada</h2>

We, the undersigned, <b>citizens of Canada</b>, call upon the <b>Government of Canada </b>to make autism treatment and therapy in Canada free, thus making it an essential service.

 

[Author]

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