[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,

Attention! Attention! With respect to the Autism Petition for federal action, it appears that there is a distinct possibility that the first batch of signed petitions which I gave to an MP two weeks ago has been going through the screening and review process and will probably be ready for tabling in the House of Commons in about two weeks or so. I am hoping for a media event to publicize the matter. One thing the journalists are likely to ask is "how many people have signed on?". It is very important that we try to get the figures as high as possible. Please forward your signed petitions to your MPs and provide the total signature figure to your FEAT BC petition contact Nancy Walton.

However, there is also another avenue to get the figures up and to help publicize the cause. Mr. Charles Matthews of Ottawa's "Disabled and Proud" organization created the electronic version of the petition which is at:

http://www.petitiononline.com/andap1/petition.html

It currently has over 700 signatures! Please add yours to the list and pass the link on to your friends across Canada so that we can get the figures up as much as possible!

Thank you all.

Andrew Kavchak
(The Parliament Hill protester)

[Nancy Walton]

HAVE YOU TAKEN ACTION ??

I few weeks ago, I put out a post asking everyone to get 25 signatures on a petition and send it to their MP (or an MP you have a connection with). This was galvanized by a man named Andrew who has been protesting outside the parliament buildings for half a year. He started this petition and has presented to a sympathetic MP. We want as many MP's as possible to receive similar petitions so that all parties are aware of our cause.

I have my 25+ signatures (more thanks to other parents who have given me theirs). BUT, I have not heard back from anyone else. Please get this done this week if you can and present it to your MP. If you have done this, or when you have done this, let me know and I'll keep track of how many signatures have been gathered and who they have gone to.

By ourselves, we are only one, together, we can have a voice. If you are frustrated with paying for your child's therapy or with the lack of qualified consultants in the area, THERE IS SOMETHING YOU CAN DO !! Get together with one or two other families. There are some parents getting relatives to gather signatures on more petitions throughout Canada.

I hope to be inundated with e-mails in the next week telling me you have sent in your petition. Thanks for helping our children.

Nancy Walton
wiklo@shaw.ca

[Sabrina Freeman]

A reply to Ursula's post on the ASBC list of service providers.
**************************************************

Thank you Ursula, for your insightful and probing comments regarding the ASBC list of purported autism treatment providers.

Here's plain-talking truth that only FEAT-BC can tell you, since we aren't reliant on a single penny of government funding.

The ASBC list is a roster that government forces the ASBC to publish on its web site. How can they do this? Simple. The ASBC annually receives over $350,000 of government dough to run its operation. The minute ASBC resists government's demands on ANY issue, which in this case would be publishing the deficient government "list" of so-called treatment service providers with necessary caveats and disclaimers and/or exclusion of service contractors who are Auton strike-outs, then ASBC would very much run the risk of severe MCFD reprisal i.e., turning off the decades-old spigot of social services money to the organization.

Although I know as fact that all the directors of ASBC are enormously dedicated, good people, and that they may very much want to do exactly what you suggest, Ursula, the problem with the ASBC is very much structural — it has always been far too close to government and that debilitating financial relationship remains unchanged.

I truly can't wait for the day that the ASBC is 100% self-sufficient and is at long last no longer financially dependent on the B.C. Government and its intransigent, court-defying bureaucrats, particularly Cameron Keller, junior autism bureaucrat on Broughton Street in Victoria and his boss, government’s autism wars captain from the very beginnings of the Auton struggle, Ms. Robin Syme, Assistant Deputy Minister of MCFD.

I truly can't wait for the day the ASBC finally declares its freedom from government’s yoke and becomes a genuinely independent and effective advocate for children afflicted with autism. I believe everyone, including the good people at the ASBC, shares in this vision and it will happen … all in good time.

Regards,
Sabrina (Miki's Mom)
Executive Director, FEAT BC

[Andrew Kavchak]

Hi Folks,

In his "Reply to the Speech from the Throne", Senator Jim Munson yesterday made reference to our struggles to do what is best for our children suffering from autism.

He also issued a Press Release stating that "Autistic Children Deserve Better".

Please show your appreciation by sending his office a message of gratitude and support along with any suggestions on how they may further help us in the struggle for proper healthcare.

His office may be reached at:
(613) 947-2504 or by email at his assistant Alexandrew Asselin:
ASSELA@SEN.PARL.GC.CA

Thank you.
Andrew Kavchak
(The Parliament Hill protest guy in Ottawa)

Release

October 6, 2004
Hold for release 3:00 PM

STATEMENT BY SENATOR JIM MUNSON
Autistic Children Deserve Better

Senator Jim Munson calls on Prime Minister Paul Martin to work with the provinces to create a national autism program.

Senator Munson says that Prime Minister Paul Martin’s pledge to shorten waiting lists in five key areas should be expanded to include the early treatment of autism: “The fact is autism is a growing problem in Canada. It affects one of every 200 babies born each year. The numbers are growing and what we have to offer families is a patchwork of treatments, long waiting lists, and coverage that depends on where you live. Too many parents are left on their own to deal with the many needs of an autistic child. The resulting financial burden can be overwhelming.”

In his reply to the Speech from the Throne, Senator Munson says: “the issue is universality. The people affected are our most vulnerable citizens who are being denied treatment that is proven to work.” Senator Munson emphasizes the need for a national vision: “There must be a national will and with that a national autism program.”

– 30 –

Office of the Honourable Jim Munson: (613) 947-2504

Below are extracts from the speech:

I move, seconded by the Honourable Senator Maria Chaput, that the following address be presented to Her Excellency the Governor General of Canada:

To Her Excellency the Right Honourable Adrienne Clarkson, Chancellor and Principal Companion of the Order of Canada, Chancellor and Commander of the Order of Military Merit, Governor General and Commander-in-Chief of Canada.

May it please your Excellency:

We, Her Majesty’s most loyal and dutiful subjects, The Senate of Canada in Parliament assembled, beg leave to offer our humble thanks to Your Excellency for the gracious Speech which Your Excellency has addressed to both Houses of Parliament. …
…
It is a great honour for me to be asked to speak today. As Canada’s newest Senator, I am humbled. It has been less than a year that I joined you here in this Chamber. The past months have been a time of transition. A time for learning. I want to thank all my Honourable Colleagues for their graciousness and warmth. I thank you for your experience, knowledge, and years of dedicated service.

Introduction
It has been several months since we asked the people of Canada to choose their government.
…..

This Speech from the Throne outlines the direction we will be taking to achieve our goals of a better Canada for more Canadians. It outlines what we are going to do for health care, for children, for cities and communities, for the environment, for Aboriginal people, and for our foreign policy.

Health Care
I would like to applaud the Prime Minister and the first ministers for their deal. The goal was to ensure that our most precious social program be made sustainable for years to come. Universal, accessible health care is what Canadians want.

Open and flexible federalism is what Canadians want. Discussions about federalism, asymmetrical or other, are a debate of little interest for people on a waiting list for an MRI, a hip replacement, or cataract surgery.

The challenge is to make sure that this health deal delivers results. And I believe it is the role of the federal government to ensure that health care dollars are spent for national health care priorities. Like many Canadians, I still have concerns related to accountability. I strongly believe in national standards. Our existing health care system is a hungry beast with an insatiable appetite for money. But money isn’t all it needs. It needs to be retooled to meet the needs of an aging population. Our national health care system is now middle-aged.

It’s clear that it needs to be modernized to meet the demands of modern times.

We have experts here in this Chamber who can make our health care system better. Senators Kirby and Keon have put forward proposals to make our health care system work better by improving the funding formula for hospitals by basing it on services delivered. They propose that we review which health care professional delivers which service in which health care setting. Their road map for improving Medicare will help us get a bigger bang for our health care buck and I think we should pay attention to them.

I would also like to see us look at health care within the broader social context, to understand it as a barometer of what is working well in our society and what needs more attention.

The Prime Minister has said that our government will work to reduce waiting times for cancer treatment, coronary care, joint replacement, high-tech diagnostics and eye surgery. No one will dispute that Canadians deserve quicker service from their health care system. But I would like to add another item to this list – an item that is a health issue, but has slipped through the mesh of our social safety net. The issue is autism.

One father in Ottawa, a public servant, forgoes the usual lunch hour routine of sandwiches and errands and instead walks on Parliament Hill with a sign saying, “Kids with autism need health care not waiting lists”. The fact is, autism is a growing problem in Canada. It affects one of every 200 babies born each year. The numbers are growing and what we have to offer families is a patchwork of treatments, long waiting lists, and coverage that depends on where you live.

Treatment for autism is similar to treatment for people with brain injuries. For kids with autism, the treatment is intensive and must happen before they are six. It’s been proven to be effective, but it is also very expensive. In fact, for parents with kids with autism, the treatment is so expensive that it is beyond the reach of most.

Is this the face of Canada’s universal health care system? Senators, I’m afraid it is. And yet the cost of not treating autism is much higher. Children who don’t receive treatment very often grow up to become wholly dependent on the state for support, and this support is estimated at $2 million over the lifetime of the individual. So you see, apart from being immoral, denying coverage is a false economy. The issue is universality. And the people affected are our most vulnerable citizens who are being denied treatment that is proven to work.

We need a national vision. There must be a national will and with that a national autism program.

[FEAT BC Admin]

From Harold L. Doherty, Father of an 8 year old autistic boy, Fredericton NB

*****************************************

Hello

I am a parent advocate for autism in New Brunswick and have been reading The FeatBC board news for some time. I have asked others in New Brunswick to download the petition and present signed versions to NB Members of Parliament. The FacingAutism newsgroup was started to provide parents with a forum in New Brunswick on which issues could

I agree completely with Ms. Walton that it is time for more action. Provincial governments across Canada appear to have settled on the same strategies:

1. Characterize autism treatment as a social service not a health treatment.

2. Discriminate against and deny treatment to children over the ages of 5 or 6.

3. Engage autism organizations in participation in non-treatment
"support" services lending credibility to government characterization of autism treatment as a social service and allowing governments to crow about their efforts on behalf of autistic persons. This strategy also helps government keep leaders in the autism community from insisting on full treatment for all autistic persons.

4. Delay implementation of autism treatment and wait for the Supreme Court of Canada decision in the Auton case hoping that the lower court decisions will be overturned.

In New Brunswick a further strategy is to define "evidence based intervention" funded for children under 5 so broadly as to render the concept meaningless while encouraging parents to explore other unproven but cheap alternatives for their children.

I would like to thank FEAT-BC for its continued focus on activism in support of our autistic children.

Harold L. Doherty
Father of an 8 year old autistic boy
Fredericton NB
blackroc@nbnet.nb.ca

*****************************************

[Nancy Walton]

Time for MORE action:

I urge EVERYONE to take some time to download the petition that Andrew has talked about on a previous post. We have hundreds of people across Canada reading this chat board. If each person gets 25 signatures at 25 addresses,and hands the petition in to their MP….think about the message this could send.

I am willing to collate how many signatures are going to which MP. Please e-mail me with the subject "PETITION to MP" and tell me how many signatures you got and who you sent them to. I will post our results (keeping your name private).

Please e-mail me AFTER you have sent the petition in to your MP.

I look forward to hearing from lots of people.

Nancy Walton
wiklo@shaw.ca

petition can be downloaded at

https://featbc.org/downloads/PetitionOct2004.PDF

[Deleted User]

An open letter to the Autism Society of Ontario Executive Director sent by
registered mail. Formatting has been lost in posting. Please note this
letter is written on my son's behalf and the concerns are my own and may or
may not be representive of other parents or members.

October 4, 2004

Margaret Spoelstra
Executive Director
Autism Society of Ontario
1179A King Street West, Suite 004
Toronto, ON
M6K 3C5

RE: ASO involvement in “working group” and position on “SUPPORT” program

Dear Ms. Spoelstra,

I write to you today with recent concern regarding a newspaper article that
ran in the London Free Press interviewing an ASO “advocate”, and subsequent
announcement of Monday October 4, 2004 from Andrew Weir, Ministry of Family
and Children Services, confirming a support and consultative model program
(rather than treatment) for children over six with Autism.

It is my understanding that on March 30, 2004 a document marked “not for
external distribution” that I obtained from a MFCS Ministry source, clearly
stated the forthcoming agenda to deny treatment beyond age six (please see
attached). It states:

· “2. Support school-aged children and youth with autism as they learn in
schools.
Support a smoother transition to school – Transition coordinators will
support children being discharged from the IEIP by working with families,
therapists, and educators to identify language, behavioural, social and
academic needs for successful transition to publicly funded schools.
The Ministry of Children & Youth Services and the Ministry of Education
Joint Working Group will specifically determine how ABA training will be
provided to teachers, education assistants and parents. Students will
receive help according to their individual needs. This is NOT IBI (20 – 40
hours/week program).”
· That May 2004, a “working group” was formed.
· You joined the “working group” and participated in a non-transparent
process of which the membership was not privy to nor in some cases aware of.

I have had opportunity to speak with many members of the Autism Society of
Ontario regarding this issue and many were surprised to even hear that the
ASO was part of this working group. It would appear the membership at large
was not abreast of the ASO representation at the table. Members have tried
to contact you regarding your position. Unfortunately there has been no
response forthcoming from you.

I am contacting you as a concerned parent of a child with Autism who has
been fighting for medically necessary autism treatment (IBI).

I understand that the Autism Society of Ontario:

· Directly supported the Autism Society of Canada’s intervener application
to the Supreme Court of Canada whose position is that IBI is medically
necessary.
· Stated in your March 4, 2004 budget submission to Mr. Greg Sorbara, “ASO
is calling on the Government to expand the intensive early intervention
program to provide evidence-based, effective treatment for all children with
Autism Spectrum Disorders (ASD)…”

I would assume that you would be aware of the following:

· “Behaviour supports” and consultative models have been found to be
ineffective under exhaustive evidence by the courts. (five judges) Auton
· That it has been determined by the courts that “supports” do not allow
children to access education.
· These supports are un-ethical. Reason for Judgment Justice Allen Auton
para 67 “Providing a number of supportive services to a disorder that with
treatment we know that half could recover, is tantamount to withholding
treatment and continuing with support and respite services for AIDS patients
after a treatment that can cure half of them has been discovered.”
· This “support” program is not tantamount to IBI treatment.
· This “support” program still denies children with Autism the right to
treatment during school hours in order to access education.
· Endorsing a “support” and “consultation” model that has already been
discredited would be negligent.
· Endorsing a discredited “support” and “consultation” model would
shamefully contravene and misrepresent the ASO membership at large who have
and continue to mortgage homes, sell cars, fight in court for proven
effective science based ‘treatment’.
· Your support would violate the Human Rights Code, the Charter of Rights
and Freedoms, The Convention on the Rights of the Child, The Ontarians with
Disabilities Act and specifically contravenes Policy and Guidelines on
Accommodation for people with disabilities 2002 H.R.C.

It is my position as an informed parent and treatment advocate that:

· Larger agenda intentioned to establish legitimacy and lend credibility to
patently ineffective support programs, should not to be sanctioned by any
party for convenience at the expense and rights of an individual and in
particular when it is a vulnerable disabled child.
· The evidence shows the agenda of the government with regards to these
support programs pre-exists the formation of this working group.
· The evidence suggests that only parties who would loan credibility without
question to the pre-existing government agenda were invited to participate
in the “working group”

As a concerned parent who has fought so hard for my child’s right to
treatment could you please let me know in writing the following:

1. Did you participate on behalf of your membership in bringing the
Government Agenda to deny treatment to children over six to fruition?
2. Do you as the Executive Director of the Autism Society of Ontario endorse
the recent announcement of the “support” program and consultation model?

Sincerely Yours,

Norrah Whitney
Parent
XXXXXXX
Etobicoke, Ontario
M8W 1H5

[Nancy Walton]

If you are coming to the South Fraser ASBC meeting, Thurs, Oct 14, I will have the Petition there to sign….BUT I will also make copies for anyone who wants to get their own 25 signatures.

Please call Roxanne at 604-541-1554 or e-mail her at bradrox@telus.net to let us know if you want your own petition. We'll make copies for you.

Let's go get them folks!!!!

Nancy Walton

[Andrew Kavchak]

Hi Folks,

Thank you so much for your interest and work relating to the Petition drive. Just to clarify a few points so there is no misunderstanding, a petition requires a minimum of 25 signatures to be tabled. The signatures must be original and accompanied by the person's full address. Please do not make any erasures or crossing things out marks as this will result in the petition being voided and not qualify for tabling. Also, only Canadians can sign. MP signatures do not count.
Although 25 signatures are the required minimum, no MP is actually required to table it. However, once tabled, the government is required to respond within 45 days. Thus, this keeps the matter on the agenda. The trick is to find an MP who is willing to table it. The first MP I asked about this was an MP that I met one day while protesting on the Hill. He has already seen the wording and agreed to table it. I have enough signatures already and will give him the petition later this week. Several other families will be joining me on the Hill to protest today and tomorrow as Parliament starts up again with a new session.
Again, the petition has to be in the right format. The wording at the heading of it is in the right format. There should be lines across the page for each signature. The second pages and following need at a minimum to make a reference to the petition topic, but to avoid confusion and the risk of rejection, I would simply use the first page of the petition over and over again so that the subject is very clear and there is no risk that the Speaker or the Clerk of the House may reject it and prevent it from being tabled because of a mere technical format problem.
By the way, an Ontario website posted an article about the petition and the petition itself (and a picture of my protest) at the following website:
http://www.oacrs.com/News/2004/October/Oct01.htm
The petition can be downloaded and printed from that site as well.
As you know, in Nova Scotia last week a petition calling on the provincial government to provide ABA therapy was tabled in the provincial legislature with 12,000 signatures. We wish the families in Nova Scotia all the best!
Thank you BC for embracing this petition idea so much (I have received a number of wonderful emails) and for what you are doing to get it signed up and to help lobby our MPs and government.
Cheers!
Your Ottawa colleague,
Andrew

[Isaac]

This post is on the important nationwide petition drive Andrew Kavchak has launched for MP support of our children's cause in Canada's Parliament … and there is new session coming up soon.

The MP petition idea is a very good one; the 25 signature rule apparently compels MP's to table Andrew's autism health care petition in Parliament, wherein government is obliged to formally reply within 45 days.

Salient for our discussion group (with members across the country) is this: say a dozen or more Canadian MP's are forced to table the SAME autism treatment petition in Parliament because it went out across the country and garnered the necessary signatures; the impact on government will be far more forceful.

Please download the MP petition from the FEAT BC server at this address –> https://featbc.org/downloads/PetitionOct2004.PDF

If you are moved and energized by what you read, please print out a few copies, go out and gather 25 signatures (of voting age) in your riding and present it to your Member of Parliament. The request to your MP is simple: "I'm a voting resident in your riding and so are the 25 signatories to this autism health care petition. Please table the petition in this session of Parliament for our Federal Government's immediate attention."

Isaac (Miki's Dad)
FEAT of BC

[Author]

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