[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

[Deleted User]

Very good article and well put. I like the comment that if it were cancer we wouldn't be having this discussion. How true. MSP would be available to them without question!

I personally believe that MSP should fund treatment…. I live for that day!

[Isaac]

By Isaac (Tamir) on Monday, May 19, 2003 – 09:10 am:

From Times Colonist (Victoria)
http://www.canada.com/victoria

Appeal ruling hailed by autism advocates

Jeff Rud
Times Colonist

Sunday, May 18, 2003

Advocates for British Columbia's autistic children are applauding a Supreme Court of Canada ruling.

The nation's top court has decided to grant the provincial government leave to appeal a B.C. Supreme Court ruling that ordered it to pay annual intensive therapy costs for autism of up to $60,000 per child.

The group Families for Early Autism Treatment of B.C. says that in the long run, the decision will actually be good for autistic children across Canada.

"It means that every child with autism across the country will be protected when the Supreme Court of Canada rules on this case,'' said Sabrina Freeman, FEAT's executive director. "That is so significant, because this (the autism-funding controversy) is happening all across Canada.''

Freeman concedes that it is impossible to predict what the Supreme Court will decide after the appeal is heard, but "I am confident it will uphold the constitutional rights of the children.

"I cannot see the Supreme Court of Canada turning their backs on these kids.''

The appeal, which will likely be heard within the next year, is the latest instalment in a case that began several years ago when four B.C. parents with autistic children sued the province over a lack of funding for medically-necessary treatment of autism.

That resulted in B.C. Supreme Court Justice Marion Allan ruling in 2000 that the government had violated the rights of autistic children. Allan ordered that the province begin providing "medically necessary" treatment to all autistic children in B.C.

A government appeal of the decision was heard in B.C. Supreme Court last October. Not only did the court uphold the first ruling, it also ordered the province to provide treatment to all children under the autism- spectrum disorder until physicians say it is no longer beneficial.

The province subsequently applied for leave to appeal the B.C. Supreme Courtdecision.

That was granted last week. Leave for the parents to cross-appeal also was granted.

B.C. Attorney General Geoff Plant said the case boils down to determining to what extent the Charter of Rights can be used by the courts to dictate health and social spending decisions by governments.

In the meantime, Plant said, the government is fulfilling the obligations of the ruling by providing funding to autistic children.

Currently, autistic children under the age of six are eligible for up to $20,000 per year in funding, and with those over six are eligible for about $6,000 in out-of-school funding.

Freeman said this funding is woefully inadequate to provide what the court has ordered. Lovaas therapy, which Freeman said is the only science-based, peer-reviewed applied behavioural analysis treatment, can cost as much as $60,000 a year.

"Every child under the age of six receives one-third of the treatment necessary,'' Freeman said

Michael Lewis, president of the Autism Society of B.C., said a 40-hour week of applied behavioural analysis therapy is often what is prescribed for children with autism.

"Twenty-thousand dollars doesn't cover that,'' Lewis said. "These children are sick. They have a medical condition. If this was cancer, we wouldn't be having this discussion.''

[Isaac]

The Langley Advance News did a page three piece today on the Supreme Court of Canada’s decision to hear the Auton appeal. It’s available for download on the FEAT BC server at this address:

http://www.featbc.org/downloads/langley_advance_05_17_03.pdf

[Barbara Rodrigues]

Hi everyone:

Hopefully everyone got to hear Jean's interview with CBC radio. The radio has asked people to comment on how they feel about the court case, how they about the government appealing it and the parents continuing with it.

The email is kelowna@cbc.ca

Barbara
Jeremy's Mom

[Isaac]

REPOST FROM THR ME-LIST
********************************************
Date: Thu, 15 May 2003 22:20:10 +0000
From: "N. Whitney"
Subject: Supreme Court of Canada to hear ABA case

I just wanted to let Canadian families know that the Supreme Court of Canada
decided to hear the Auton leave to appeal/appeal.

Both parties appealed and we are VERY pleased with the decision.

For those of you interested I will be giving 11 separate radio interviews
regarding the decison starting at 6 am until 9 am (Ontario time) across
Canada.
I am not sure of the local stations but they are all CBC affiliates.

Here is the time sch.BOOKED: 6:00-8:50 a.m. ET

STATION TIME CONTACT PHONE #

Ottawa 6:00
Sydney 6:20

Ontario Morning 6:40

Winnipeg 7:00

St. John's 7:20
Yellowknife 7:30
Quebec city 7:40
Regina 7:50

Kelowna 8:20
Whitehorse 8:30
Victoria 8:40

Another riviting day in court again today. I strongly encourage Ontarians to
attend the trial. We will post next weeks sch as soon as it is available.

Best Regards,
Norrah Whitney
Feat of Ontario
aba4u@earthlink.net

[Barbara Rodrigues]

Hi:

For those of you in the Okanagan – 93.7FM will have the Jean Lewis interview – it will be on at 7:15 am I was told by the guy from CBC. As we all know Jean is a great speaker and I am looking forward to hearing her thoughts.

On another note, does anyone know roughly what kind of time line we are looking at before the Supreme Court of Canada hears the appeal?

Good luck to all involved in this huge battle – I pray that justice will be done and in the end the rights of all the autistic children in Canada will be won. Our hearts, prayers and thoughts are with all of you as you embark on this journey.

Barbara
Jeremy's Mom

[Isaac]

Hello everyone,

Following this post is a piece from the Toronto Globe and Mail on the Supreme Court of Canada’s decision to hear the landmark Auton case on our children’s rights to universal access to medically necessary autism treatment.

Canada’s nine highest judges decided they will hear this landmark autism case … and they don’t hear too many appeals each year (about 6 or 7 percent of cases filed is average). Our children’s autism struggle made the cut.

Canada’s apparent "newspaper of record," the Globe and Mail, covered the important event today; they found it to be a story of national importance as did CKNW — and CBC radio will be talking about this again tomorrow morning. What about B.C.’s "newspaper of record," the Vancouver Sun? In short, it’s not even on the radar screen. The Sun ignored the whole thing, as they have most of the autism war in this province. Worse still, one of the Sun's senior Columnists – Vaughn Palmer – ignored it this morning too.

Between 7 and 8, CBC radio broke the story about the Supreme Court of Canada’s decision to hear the autism appeal. They also happened to be interviewing Vohn Palmer at the same time regarding the Liberals’ record thus far, at their second anniversary in power. Palmer had not a single word to say about the ongoing autism legal battle in B.C. – even as the Supreme Court of Canada story was breaking on the same radio program at the same time!

Hard to say what issues Mr. Palmer thinks are truly important and newsworthy in BC, but opining about the constitutional rights of disabled children — and BC’s ongoing, systemic violation of same — does not appear to be Vohn’s gig, even as a big BC legal story is happening when he’s being interviewed by the CBC.

Not to be left out of the myopia, the Vancouver Sun also failed to print the important autism story (again), but it WAS covered in Toronto (see below).

Isaac (Miki’s Dad)

************************************************************
Supreme Court to hear autism case

By KIRK MAKIN
Globe and Mail Update

POSTED AT 11:19 AM EDT Thursday, May. 15, 2003
The Supreme Court of Canada has agreed to hear a landmark
case involving the right of judges to direct how health-care money should be
spent.

In the decision under appeal, the B.C. Court of Appeal ordered the province
to provide intensive treatment for autistic children.

Siding with four sets of parents who had been denied an expensive therapy, a
2-1 court majority said they had no choice but to forcibly reorder
government health-care priorities.

The B.C. judges made it clear that when constitutional rights and the
welfare of children are at stake, governments lose their monopoly over
budgetary decision-making.

The B.C. ruling infuriated critics of judicial activism and gave renewed
hope to those who believe activist judges can prevent penny-pinching
legislators from making minorities absorb the brunt of their budget-cutting.

Not content simply to order intensive therapy costing between $40,000 and
$60,000 a year, the B.C. appeal judges awarded the parents 'symbolic'
damages of $20,000 each.

They also stressed that they are prepared to enforce their order if the
province fails to follow through with proper therapy.

"This case is obviously of great importance to the parents and their
children," constitutional lawyer David Stratas said Thursday. "But
governments who face competing demands from many groups, are looking closely
at it too. This is about a right to health care. It is a significant step
forward."

Mr. Stratas said the Supreme Court's ruling will provide an important signal
about its current thoughts on how fully the courts should throw themselves
into modifying government priorities that offend the Charter.

"Is it appropriate for courts in effect to order government to supply
funding in order to eliminate rights violations?" he said. "Or, is funding a
central task of the legislature Ñ and all courts can do is declare rights
breach and leave it to the legislature to design an appropriate response?"

Mr. Stratas noted that the Supreme Court also granted leave to appeal last
week to a Quebec case involving constitutional rights and access to health
care.

"These decisions have the potential to have an impact on our state funded
health care system," he said.

Autism is a neurobehavioural syndrome that affects 10 to 15 out of every
10,000 children. Symptoms, which include disordered thinking and erratic
behaviour, typically appear when children are two or three years old.

Left untreated during a window of opportunity that lasts only a few years,
most autistic children are doomed to a lifetime of social dysfunction and
isolation. Many end up being institutionalized.

Funding of autism therapy varies from province to province, and gaps in
treatment have spawned several class-action lawsuits. Many children with the
diagnosis get little or no treatment because they are beyond the upper age
range for treatment Ñ usually about six Ñ before they are selected.

David Corbett, a Toronto lawyer battling the Ontario government over autism
in one suit said recently that he hopes the B.C. decision induces other
provinces to do "the right thing" and stop putting money ahead of children's
health.

"I think the court is saying that it is very difficult to draw the line on
health-care services, but that leaving this service out was just plain
wrong," Mr. Corbett said.

The B.C. court specified that the province must supply funds for Lovass
Autism Treatment, an intensive and time-consuming technique that is
considered the most effective therapy available.

"Having created a universal medicare system, the government is prohibited
from conferring those benefits in a discriminatory manner," the court said.

The ruling is rooted in equality guarantees enshrined in the Charter of
Rights as well as the inherent duty of courts to look after the interests of
children. The court said that the province failed to justify treating
autistic children as if they were 'less worthy' of medical assistance than
non-autistic children. "It is to say that the community is less interested
in their plight than the plight of other children needing medical care and
adults needing mental-health therapy," Madam Justice Mary Saunders and Mr.
Justice John Hall said.

While they expressed sympathy with government arguments that the courts
ought not to be dictating health-care priorities, the judges said that the
consequences of not treating autism in a timely manner are unacceptably
grave.
************************************************************

[Sabrina Freeman]

The Supreme Court of Canada announced this morning that it will hear the Government's appeal of the B.C. Court of Appeal's ruling in the Auton case. Start collecting those "frequent flyer" miles because we are going to Ottawa!

Sabrina

[Deleted User]

Supreme Court Press Releases

SUPREME COURT OF CANADA — JUDGMENTS TO BE RENDERED IN LEAVE APPLICATIONS

OTTAWA, 12/5/03. THE SUPREME COURT OF CANADA ANNOUNCED TODAY THAT JUDGMENT IN THE FOLLOWING APPLICATIONS FOR LEAVE TO APPEAL WILL BE DELIVERED AT 9:45 A.M. ON THURSDAY, MAY 15, 2003.

24. The Attorney General of British Columbia and The Medical Services Commission of British Columbia v.Connor Auton, an Infant, by his Guardian Ad Litem … (B.C.) (29508)

[Deleted User]

Hi everyone,

Has anyone heard of where we are with the goverments appeal yet…I was under the impression that May was the month that we may find something out.

Happy Mothers Day to you all…

[Author]

Replies