[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

[FEAT BC Admin]

By Linda Cucek (James' mom)

_____________________________

Dear Linda Cucek:

One of our volunteers spoke with you recently, and you indicated that you were interested in attending our Campaign Kick Off Rally.

The rally will be held on Monday April 23, 2001 at 6.30 pm.in the Galleria of Port Moody City Hall.

Please try to attend, with as many friends as possible, because we want a large gathering to show out support for the B.C. Liberal Party and
welcome Gordon Campbell to our riding. Note: children are welcome.

Christy Clark

_____________________________

[Sabrina Freeman]

TO: FEAT of BC families
FROM: Sabrina Freeman
RE: Government’s autism program known as “P-CARD”
***************************************************************

Hello everyone — welcome to the 2001 election!

This announcement is for all FEAT BC parents.

Heading into this election, we anticipate there may be some additional media focus on the ongoing autism controversy between families and the BC Government. In this regard, we ask any FEAT BC parents who have had experience with the Government autism project known as “P-CARD”, to please contact us to describe your experience with Government's autism program — presented in BC Supreme Court as the solution to court-ruled “direct discrimination” against our children’s constitutional right to equal access to publicly funded health care.

To all families who have attempted to get their child into the P-CARD intervention pilot program — or families who have experience in the government program — please write us (or call FEAT of BC, Ph. 534-6956); we very much want to know about experience you’ve had with Government’s program for autism intervention (or your attempts to get into P-CARD).

Thank you, and please encourage everyone you know to VOTE … for the sake of all our children!

Best Regards,
Sabrina (Miki’s Mom)

Ph. 604-534-6956
Fx. 604-534-9527
mailto:skfreeman@featbc.org

[Isaac]

Follow-up to the discussion board post of 04/12/01, RE: “gem from former MCF Minister, Penny Priddy”, from her comments made to the Vancouver Sun as Government adjourned the legislature this week.

The post states:

“For the first time in B.C. history, Government was accused and found guilty of violating the constitutional rights of disabled children; for the first time in Canadian history, government was accused and found guilty of neglecting to provide or fund “medically necessary” treatment. All this during Minister Priddy’s tenure at the helm of the Children’s Ministry. This shameful history is part of the Priddy legacy too.”

In fact, the impetus for the autism treatment legal action and the court judgments all happened during Minister Priddy’s tenure at the helm of not only the Children’s Ministry, but also the Health Ministry AND the Education Ministry. Minister Priddy headed ALL three Ministries at various times from Sept. 1996 through November 2000.

Only one government cabinet minister has the dubious distinction of serving as head of all three ministries originally named in the Auton case — interesting legacy indeed.

Isaac (Miki’s Dad)

[Isaac]

Here’s a gem from former MCF Minister, Penny Priddy, from comments made to the Vancouver Sun as Government adjourned the legislature this week.

"I feel incredibly nostalgic," said Priddy. "It's a huge gift we've had. I mean I spent 91/2 years in cabinet — that's an enormous gift. I've got a lot of pride in the work I've done. It feel good to point to things I believe are legacies." (Vancouver Sun, April 13, 2001)

Funny how former Ministers come down with a case of “Selective Amnesia” after they leave office.

Let's “point” to one of the “things” in the Priddy legacy, shall we? How about the one where negligence, incompetence and arrogance vis a vis the autism treatment controversy landed Priddy’s Ministry in BC Supreme Court … where she LOST.

Supreme Court ruled our disabled kids are in the right; Priddy’s Ministry — leading the government charge in court — was found to be wrong (along with the rest of Government).

For the first time in B.C. history, Government was accused and found guilty of violating the constitutional rights of disabled children; for the first time in Canadian history, government was accused and found guilty of neglecting to provide or fund “medically necessary” treatment. All this during Minister Priddy’s tenure at the helm of the Children’s Ministry. This shameful history is part of the Priddy legacy too.

Isaac
(Miki’s Dad)

[Deleted User]

Excellent letter by Lisa Graham.

I'd like to add that while the NDP is claiming to be providing for the children under the age of 6, they are in fact, continuing to ignore them as well.

My son was recently diagnosed at Sunny hill and I asked about the PCARD program. I wanted detailed information on how one goes about signing up their child. They informed me that the only "centre" in the Lower Mainland was through the LEAP preschool which I believe is in Delta. And I have been told by a friend who had looked into that school, that your child is only able to attend that school if you live in the area. Therefore neither of my autistic children, who are both under the age of 6 are eligible.

(This is to say NOTHING of my concerns of the quality of these providers. Will they meet up to the standards the law suit fought for?)

I pointed this out to the Sunnyhill team. And summed it up with "So the NDP government is continuing to disregard the needs of Autistic children, unless they live in the Delta area, are under the age of 6 and able to get their names on to the top of list?"

The NDP government continues to ignore its legislative mandate to provide medical services. And we as parents continue to suffer financially and emotionally in our struggle to make up for their ignorance and discrimination. As if life with autism was not hard enough…

Michelle Karren

[Sabrina Freeman]

Lisa Graham, a FEAT BC mom in New Westminster, had a recent media exchange with her NDP MLA — and Attorney General — Mr. Graeme Bowbrick, in his riding’s paper.

Lisa kindly transcribed these letters to share with our group.
Sabrina

*********************************************************************
From the Newsleader, NewWestminster/Burnaby local paper

March 11, 2001 — Letter to the Editor: "NDP failing autistic children"

It is high time that the NDP realize that court findings are not negotiable, and that it is not within their mandate to excuse themselves from adherence to the Canadian Constitution. Found guilty of discrimination against autistic children, the NDP's response is to appeal the BC Supreme Court rulings, and instead offer a "new" package of services for autistic children. But unlike other NDP "good-news" announcements, the package for autistic children was released without any fanfare at all. Very likely, it is because the new package perpetuates the government's discrimination against autistic children by completely ignoring those over the magic age of six-years-old. For autistic children over the age of six, the NDP package is indeed tragic and condemnatory; for the parents of the children who don't merit equal rights under the NDP, it is heart-breaking. And the NDP are supposedly the party of social-consciousness, what a joke.

— Lisa Graham

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

From: The RECORD, NewWestminster local paper

March 25th, 2001;letter to the editor from NewWestminster MLA, Attorney-General Graeme Bowbrick: "MLA replies to criticism over govt.'s court appeal"

In response to some recent letters to the editor about early intervention services for children with autism, I would like to clarify the government's actions and the court's decisions on this matter. This government recognizes the importance of early intervention services for children with autism and related disorders. That's why we are implementing a provincial program which includes a provincial centre for autism, an advisory committee of experts in this field, and community-based early intensive behavioural intervention services. Last summer, the B.C. Supreme Court rendered its decision in the Auton case concerning the province's obligation to fund therapies for children with autism. Subsequently, the court issued a ruling last month on whether the province was compelled to fund a specific treatment program for autistic children. In the recent decision, the court held that the government's implementation date of the provincial program complies with our legal and constitutional obligations and that the government was not required to fund specific treatment such as Lovaas therapy. The court accepted the fact it will take some time to fully implement the program. The court recognized that governments must have the freedom to design programs to meet their constitutional obligations. However, the court's decision from last summer raises significant constitutional issues which we believe need to be addressed in an appeal. As a result, the government filed an appeal on these issues of law, not on the delivery of treatment services for autistic children. In the meantime, the original petitioners in this case have filed an appeal of the court's latest ruling concerning funding for specific treatment.
We are encouraged that the court recognizes that the government is taking the right steps in developing effective services for children with autism. We remain fully committed to delivering these services whatever the outcome of the appeal.

–Graeme Bowbrick, MLA (NewWestminster)

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

Letter to the Editor:

A wife accuses her husband of forgetting to put the lid down on the toilet-seat … again! The husbands response? He accuses her of forgetting to buy milk. For whatever reason, he refuses to acknowledge the wrong-doing, … and his reply? Well, it really doesn't qualify as a logical defense.

Mr. Bowbrick, the fact that your government is being forced to comply with a BC Supreme Court decision to service autistic children who are "under" the age of six is in no way a relevant defense to the critism that your government's policies continue to discriminate against autistic children "over" the age of six.

It would be more helpful to your constituents if you would respond to the specific criticism that is directed at your government rather than subject us to your political double-speak on what is a non-issue.

But how dare you imply that early intervention services for autistic children under the age of six are in any-way-shape-or-form, the result of NDP initiatives! Your government lawyers argued against the funding of such every step of the way.

Excerpt from Madame Justice Allan's July 2000 summation: **"…by failing to fund effective treatment for autism, the government has misinterpreted its legislative mandate to provide health care services[125].
**As one example, the Crown submits that if an autistic child gets cancer, he or she will receive treatment for cancer. That justification is misguided as well as unfortunate. It ignores the fact that autism is a medical disability just as cancer is and that they both require treatment[134].
**…[T]he gravamen of the government's omission is its failure to provide treatment for the underlying disability, not its willingness to ensure access to other benefits[135].

The NDP's response to the plight of autistic children has been nothing but disingenuous.

When the office of the Attorney-General agreed to acknowledge "…that a finding that the Government was in breach of its obligations to the petitioners would mean that it was a breach of its obligations to autistic children generally…[9;Justice Allen's October 2001 summation]", every intelligent individual assumed that the definition of "children" was inclusive of all persons under the age of 19-years-old.

And though technically, the Allen decision applied to the "infant petitioners", given the aforementioned "acknowledgement", we were led to believe that "every" autistic child would be accorded their constitutional rights, not just those under the age of six.

So tsk, tsk, tsk … shame on you Mr. Bowbrick for antagonizing the parents whose autistic children are over the age of six with your March 25th letter to the editor.

Please Mr. Bowbrick, just put the lid down — that is, acknowledge our criticism with an appropriate response … we should not have to resort to fighting the government in court in order to merit the implementation of our autistic childrens' equal rights.

Lisa Graham

[Sabrina Freeman]

Paul Thibideau, a hard working autism lobbyist in Ottawa, is organizing a nationwide letter writing campaign. Here is a letter he wanted us to share with members of this e-mail list, many of whom are in provinces across Canada. He has also included contact information for all Members of Parliament that we have made available at https://featbc.org/MPs.html

Sabrina

**************[P. Thibideau Letter}**************
This is to share with you my summary of comments received in response to my recent e-mail (to different groups) about a letter writing campaign. This is also to thank those who sent me their comments and suggestions.

1)- First, WE NEED TO EDUCATE THE POLITICIANS ABOUT AUTISM AND GET THEIR ATTENTION. This means that, at least 1000 letters from coast to coast will be needed. This could easily be achieved if, for instance, each family, friends and relatives of the few thousand Canadian children with autism wrote one letter and sent it to at least 10 politicians, e.g. ONLY ONE PERSONAL LETTER BY EACH WRITER TO AS MANY DIFFERENT POLITICIANS AS POSSIBLE IS ALL THAT IS NECESSARY. Politicians are quite sensitive when they receive letters about a specific situation from a number of correspondents (whether they are from their constituents or not).

This time, if we fail due to a lack of interest or efforts by every one of us, this issue likely will not be resolved for at least another 10 or 20 years – then, it will be too late for most of our children and us.

So, LET'S ALL GET ON THE BANDWAGON AND FLOOD THE FEDERAL AND PROVINCIAL POLITICIANS' OFFICES WITH LETTERS.

2)- Much pressure needs to be exerted at the Federal and Provincial levels in each of your respective areas. In addition, as suggested by Western correspondents, some of your letters should also be addressed to Ontario politicians, since a greater input from these politicians will be necessary if a satisfactory resolution of this situation is ever to be achieved.

3)- Letters reflecting your personal experience, with or without quotations and references from my earlier e-mail, (provided they are no longer than a page or two) will normally produce better results than a form letter sent by a larger number of people. Be firm, specific and indicate that you expect a response and action. If after a month or so, you did not receive any answer, follow up with another letter.

4)- IT IS IMPORTANT TO REACH AS MANY POLITICIANS AS POSSIBLE FROM ALL PARTIES, since for many of them, partisanship seems to prevail over human concerns.. You can form small groups. Each person selecting a number of politicians to write to from the list (list of all Federal M.P. and Ontario M.P.P. to follow), thus covering more ground and less duplication, Worth mentioning,.. in the province of Quebec, the concerns from some 70 families were sent to all provincial politicians.

5)- In order to add extra weight to your letters, try to form small groups of parents, friends and/or family and REQUEST A FACE TO FACE MEETING with your local Federal and Provincial representatives.

6)- It is important for the politicians to realize that WE ARE UNITED, FRUSTRATED WITH THE CURRENT SITUATION AND WE REPRESENT A SUBSTANTIAL NUMBER OF VOTERS AND TAX-PAYERS.

Please note all letters m,ust go out as soon as possible. The flow of letters should be maintained for a few weeks, thus producing a greater impact on those who must resolve this long-overdue dilemma.

7)- Any MEDIA COVERAGE in your own area would be a plus.

The annual general meeting of the Ottawa Chapter, Autism Society Ontario, is scheduled for Tuesday, April 24,2001. The media and members of the general public are invited to attend.

Paul L. T.

Ei415@ncf.ca

P.S.:- If you did not receive my (mid-March) first e-mail or you lost it, let me know and I will gladly send you another one.

WE NEED TO WORK TOGETHER

IF WE ARE TO SUCCEED.

LET'S ALL DO OUR SHARE.

[Deleted User]

Hi Everyone,
This is Franca from Victoria.
I also attended the Video-Conference last week and was glad to hear your input, Barbara. I was lined up to ask a question on specific qualifications needed for staff setting up and maintaining an autism treatment center (one of the pilot programs is right here at Queen Alexandra Hospital.) However, the so called forum conference ended up being more of a lecture with very little time for discussion. So the facilitator promised to forward my question to Dr. Guralnick; however, I haven't received an answer yet.

Also last week I attended a meeting re: Child Services Equality Act. All MLAs froom the island were invited, but only one MLA (Liberal) showed up. As usual I found myself feeling very frustrated by the overwhelming power of burocracy. Representatives from Queen Alexandra Hospital, CRD, Victoria Association for Community Living were there talking about their recently implemented community research commitees. What else is new! I let the group know how I felt about more research committees and the other parents cheered me on.

Thanks for the good work everyone!

Franca

[Sabrina Freeman]

I'd like to respond to Barb’s post regarding the Guralnick video-conference organized by MCF. I'm very happy to hear we had high quality FEAT representation at the video conference, with several members in attendance.

I have much respect for the outstanding New York Department of Health autism report edited by Dr. Guralnick and was glad to hear he delivered the message regarding what constitutes REAL best practices for the treatment of autism. I'm sure there were a few government MCF policy folks that were less than thrilled with his comments (the uncomfortable truth).

In terms of getting government to go with a province-wide Guralnick video conference on
autism, that would be great. Unfortunately, I think it may not happen until a new government is in charge — it might be a hard sell with the current government since they are somewhat miffed that autism parents who are demanding genuine best practice won't get back into line.

Barb, it's a great initiative. Keep us posted.

Sabrina (Miki’s Mom)

[David and Barbara McLeod]

Hi Everyone,

I attended the Dr. Guralnick video-conference at the Courtenay site yesterday. His presentation was on setting up a Delivery Model to ensure effective early intervention within a jurisdiction. Dr. Guralnick was personable, straight forward and knowledgeable. His model is academic, seemingly well researched and comprehensive. While it focussed on all children at risk, he referred to autism throughout and, I believe, his messages were congruent with those FEAT would give – early diagnosis, programs based on best practice / research, individualized services, current and accurate information for families, essential support of families to address the family stressors that are engaged when a child has special needs etc. Sabrina, many of his comments could have been scripted by you. Too bad his energies could not have been focussed on autism and the current state of affairs in our province. As it is, each site was asked to respond to his model with ideas of what they were ready to do and could do "at this time" to advance such a model in their communities. The discussion at our site demonstrated the sense of powerlessness folks involved feel with respect to making any changes in coordinated services. The "not enough dollars" / "not enough people" manatra reigns.

The video conference enrolled 682 people at 21 sites and provided for questions to Dr. Guralnick throughout. While it was not appropriate to ask questions specific to autism during the presentation, I did manage to make a comment during the "early diagnosis" component. I expressed our discouragement / dismay at the dismal diagnosis experiences for families with autistic children. I told him that our organization had distributed copies of the CHAT to all GPs and Pediatricians in the province and that it could be used to identify children as early as 18 months. He concurred and made comment that waiting until children at 3 or 4 is much too late. Later in the presentation, a pediatrician who identified herself as, I believe, head of pediatrics at Children's returned to my comments and expressed interest and gratitude for that kind of information sharing and well as a similar sense of urgency in diagnosing and providing adequate treatment services to children with autism.

THere were many references to forthcoming increased funding for early intervention and to an advisory committee that had suggested and organized the video conference. Should we as a group be suggesting a province-wide video conference (also partially funded by health and education ministries)on autism? Perhaps Dr. Guralnick could get specific in his model to early intervention for our kids? Food for thought?

Barbara McLeod

[Author]

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