[Isaac]

From http://www.globeandmail.com, Online Edition, December 20, 2002

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Waiting for autism care ruled unacceptable

By ALLISON DUNFIELD

Globe and Mail Update

The Newfoundland Health Department was ordered to
eliminate the waiting list for all autistic children in the
province in a decision handed down by the provincial Human
Rights Commission this week.

The decision was prompted by a complaint by grandmother
Gloria Sparkes in October 2000 on behalf of her grandson,
Brandon Sparkes.

Brandon was diagnosed with autism when he was three years
old and was referred to a provincial behavioural-analysis
program.

He was eventually accepted into the program, but he was
placed on the waiting list for one year.

The program is recommended treatment for autistic children.

A statement from the Commission said that "Brandon was
placed on a waitlist for one year even though there was
evidence that early intervention is critical."

Adjudicator Valerie Marshall said in her Dec. 18 ruling that
the Department of Health and Community Services must
provide funding sufficient to eliminate the waitlist for applied
behavioural analysis for all autistic children in the province.

Gladys Vivian, executive director of the province's
human-rights commission, told globeandmail.com that the
waiting list is approximately 15 children at a time.

She said the commission's decision further orders the health
department not to cut money for programs for children with
autism.

The adjudicator also noted in her decision: "As to the
respondent's suggestion that a reduction in services to autistic
children may be required to comply with an order to eliminate
the waitlist, the board wishes to make it perfectly clear that
this order contemplates further funding to the autistic program
as it is presently offered; this order does not contemplate a
reduction in the present service as it is now delivered to
autistic children."

Ms. Marshall ordered the health department to pay Brandon
$3,000 in general damages.

Ms. Marshall also said that her decision did not mean that all
waiting lists for medical services in the province are
discriminatory.

The Department of Health and Community Services has 30
days to either comply with the decision or to appeal, Ms.
Vivian said.

Newfoundland Human Rights Commission ruling (PDF file)
http://www.gov.nf.ca/hrc/Press%20Releases/press.sparkes2.PDF

[Isaac]

A flyer and registration form for the upcoming FEAT workshop can be downloaded at the 'Events' page of the web site.

The direct link for the flyer is here:
–> http://www.featbc.org/downloads/eaiw.pdf

Isaac (Miki's Dad)

> ————————————————————
> FeatBC Discussion Board: Room One: General Topics Discussion
> ————————————————————
>
> By Jen Friedmann (Friedmann) on Tuesday, December 17, 2002 –
> 11:54 pm:
>
> Hi there I was just wondering if anyone can tell me anything
> else about the Shelley Davis Workshop in Jan. I can't find
> the registration application on the feat board anywhere. If
> anyone has more Info or a contact number i would really
> appreciate it, as I am eager to attend the workshop.

[Isaac]

For the bilingual members in our group (and we know you’re out there) … this info may be of interest.

The French language CBC news magazine, 'Sans Frontieres,' did an eight-minute autism piece on Monday, focusing on BC families and the Auton ruling, but also broadened to the national perspective. If your high school French is holding up okay ;-) do check out the CBC link below.

http://www.radio-canada.ca/Medianet/CBF/SansFrontieres200211111730_2.asx <– link ends here.

Thank you to Mike Leger, for sourcing the link!

Isaac (Miki's Dad)

[Isaac]

Hello Everyone,

Apparently it takes a front-page story in Toronto for the Vancouver Sun to wake up and take notice of an important BC story with profound national importance — not flattering for the local press.

A day after Toronto ran a major front page story about BC's long running autism wars (Thursday, 10/17/02), the Vancouver Sun’s Editor seemingly cobbled together a column with serious errors (available after this post for everyone's perusal). A notable gem from the Sun editorial: "The B.C. Court of Appeal's long awaited decision … held that B.C.'s refusal to pay … violated equality rights because the province funds programs for people with other disabilities." Not exactly. Here's what the judge actually said: [129] "In this case, the appropriate comparative groups are non-autistic children …"

Such a glaring error in a leading paper is very troubling. But it gets worse. The Sun's Editor views the Auton ruling as "bad law." The paper takes the view that the decision is certain to be "condemned as virulent judicial activism …" Last time I checked, it's legislatures that make law – judges interpret and enforce the law. In our case, we're talking about enforcing the supreme law of the land; otherwise know as Canada's Constitution (young as it may be). If the Sun regards the Charter of Rights of Freedoms as "bad law", then they stand diametrically opposed to Provinces and a Federal government who all signed the parchment back on April 17, 1982! Moreover, if abiding by — and the courts enforcing – Canada’s Constitution is regarded by the Sun as "virulent judicial activism," then we’re all up against an influential (and misinformed) media that hasn't a clue about what constitutional law really means. A critical point the Sun seems to be missing is that the courts are GUARDIANS OF THE CONSTITUTION! If the courts' putting necessary teeth into this crucially important national document constitutes "bad law," then again, we all have a very serious problem – far greater that coping with lightweight BC journalists.

It's certainly gratifying the Sun is finally paying SOME attention to this very important court ruling. Strangely though, this very big story was totally ignored by our leading paper last week. It's more than a week late and in journalist years, that's about seven times past 'sell by' date.

So why the Sun editorial today? One theory goes like this: the Toronto Globe and Mail's 'Justice Reporter' ran an incisive analysis yesterday on FRONT page. The paper actually took a swipe at BC journalists by spotlighting their negligence in not covering this major story. The Globe and Mail said, "The [BC Court of Appeal] ruling …went virtually unnoticed after being released last week…" Hardly the accolades seasoned BC journalists and editorial staff would hope for, right? But soon after we got the Sun’s Johnny-come-lately editorial. All this begs the question: what's going on with the leading paper on the Wet Coast?

Are kids with autism somehow less worthy of appropriate news coverage in the Vancouver Sun … less than other members of society? Here's what BC's Court of Appeal says about a tightly related topic: [51] "…the failure of [government] to consider the individual needs of [children with autism] by funding treatment is a statement that their … disability is less worthy of assistance than the transitory medical problems of others."

The glaring omission of timely and appropriate news coverage for Auton in the Vancouver Sun sure looks an awful lot like a "statement" that key BC journalists somehow deem autism to be "less worthy" of news coverage than other stories. Is this more discrimination? Hard to know for sure, but the evidence thus far doesn't look all that good. Toronto papers 'get it'… what's up with Vancouver?

Isaac
(Miki's Dad)

From canada.com, Vancouver sun, Friday, October 18, 2002
________________________________________________________

Sadly, the court had no choice in ruling on autism funding

Vancouver Sun

Friday, October 18, 2002

Hard cases might make bad law, but government apathy makes even worse law.

The B.C. Court of Appeal's long-awaited decision on autism therapy programs
held that B.C.'s refusal to pay for them violated equality rights because the
province funds programs for people with other disabilities.

The decision is a double-edged sword.

On one hand, we side with the court in expecting the province to fund treatment
for autistic children. For both moral and economic reasons, it makes good sense.

Morally, the government has a duty to provide care to its most vulnerable
citizens.

Without proper treatment, more than 90 per cent of autistic children show no
improvement and live out their lives in institutions. For them and their families, a
life without adequate help all too often means a life without hope.

Economically, it's hard to see why the government refused funding. Although the
ailment is expensive to treat — the therapy at issue costs $60,000 per child per
year — research suggests that intensive treatment can produce significant results.
And that can lead to significant savings.

A recent study by the Universities of Toronto and Quebec found the total cost for
care of untreated children over their lifetimes is three times that o f children who
receive the therapy.

On the other hand, the judgment is sure to be condemned as virulent judicial
activism since it represents the first time the judiciary has told a government how
it must spend health care money.

The decision to order funding is a recognition that the Charter confers "positive"
rights for citizens.

Traditionally, rights have been construed in a negative sense — something
citizens held against the government. For example, the right to freedom of
expression means the government cannot prevent us from speaking freely.

In contrast, positive rights require the government to do something — in this
case, provide care for autistic children. The decision could open the floodgates,
with numerous plaintiffs claiming rights to a panoply of treatments.

To be fair, the court was painfully aware of the impropriety of the judiciary
usurping the role of elected representatives.

But the court said it had no choice. Sadly, that's true. Because when faced with
government apathy — a government that would not voluntarily do the right thing
— there may be no ethical alternative to a court making bad law.

[Isaac]

Hello Everyone,

The FEAT BC press release relating to the recent BC Court of Appeal ruling on autism treatment is available for download at this address:

https://featbc.org/downloads/JudgmentRelease2002_2.pdf

Regards,
Isaac (Miki's Dad)

[Isaac]

In reply to the recent tax question posted to the board, there is some helpful insight into those issues available at the FEAT BC web site … http://www.featbc.org/revenue_canada/

Isaac

[Isaac]

Hello Everyone,

The BC Minister of Education, Honourable Christy Clark, was interviewed on CKNW radio earlier this week (The 'Bill Good' program, Monday, 09/30/02).

I likely speak for many FEAT BC families in saying we very much appreciate that Minister Clark has been a longtime, eloquent supporter of our children's difficult struggle to secure publicly funded treatment for medically necessary autism treatment. An example can be found in her forceful autism debate versus former Minister Joy MacPhail, on CBC TV's 'Y-Vote' program prior to the last election, http://bcvotes.cbc.ca/ram/bcv_yvote.ram.

In view of this, it's more than a little perplexing that the Minister seems to be confused about what the landmark Auton ruling on autism treatment actually says … and orders. Minister Clark's position — representing the Government view — is that the Auton ruling only applies to children "zero to six". That's clearly not what the court said; BC Supreme Court did not base its ruling on the age of an autistic child. In view of the former NDP government's failure to provide effective, publicly funded autism treatment, the BC Supreme Court ruled that the constitutional rights of children afflicted with autism had been violated by the BC Government … and children in the Auton case were over age five!

(Auton ruling, July 2000, http://www.featbc.org/downloads/decision.htm).

True, the Auton ruling on 'remedy' for the constitutional breach apparently accepts government's proposal to divide responsibility for implementing the Auton decision between MCF (for kids under six) and MOE (for kids six and over); that part of the Auton ruling is still under appeal by the families. However — and this is significant — the BC Supreme Court most certainly did not rule that government's responsibility for medically necessary autism treatment stops at age six! This is arguably a ruse successfully deployed by senior government bureaucrats in the Children's Ministry. News flash for civil servants in Victoria: the gambit will not hold. Children six and older also have a right to medically necessary autism treatment.

To Minister Clark, whom we very much respect, the Auton case is not exclusively about children "zero to six." This is a gross misinterpretation of facts and frankly, British Columbians expect that a government Minister should be better informed by her senior MOE staff on such an important constitutional matter.

Back to the Bill Good Program. This is what Minister Clark said about the Auton case, to an audience of over 350,000 British Columbians on Monday morning (09/30/02):

"That case [Auton] was about children who are 'zero to six', so it's before they enter the public school system."

(clip available until next Monday at
–> http://209.115.161.208/cgi/vaultfile.cgi?1-11, scroll forward to the 38:44 time mark).

One could interpret this remark to mean, "medically necessary autism treatment is not my problem … no such thing when kids get to school." Little wonder that a glaring autism treatment policy vacuum persists for children six and over, despite the Minister of Education's comforting assurance. Minister Clark states: "Linda Reid … she's been tasked with developing across the board autism policy because the Premier and I recognize that this isn't just an issue for kids who are zero to six" (at the 39:13 time mark of the Bill Good clip). This comment is both illogical and intrinsically contradictory insofar as Minister Reid only has formal responsibility for children "zero to six!"

The Minister's remarks essentially say, "yes, we've huddled on autism at the highest levels and we recognize autism policy must be revamped for all children, not just zero to six … so that's why we've given the job to a Minister who's making policy just for children zero to six."

Sterling logic that goes nowhere. This government position would be laughable if not for the dire consequences suffered by very ill children.

A member of this discussion group — Deb Antifaev — sent an E-mail to Mr. Good shortly after Minister Clark's unfortunate stumble (thank you, Deborah!). To help set the record straight regarding government's flawed interpretation of the Auton ruling, Deborah's comments were aired in hour three of the Bill Good program at –> http://209.115.161.208/cgi/vaultfile.cgi?1-13; scroll to the 09:39 time mark.

Isaac (Miki's Dad)

[Isaac]

Hello Everyone,

A worthwhile autism related news piece was aired today on CKNW’s Bill Good Show (daily audience of over 460,000 — including 120,000+ Internet listeners).

*** audio here –> http://209.115.161.208/cgi/vaultfile.cgi?3-13 ***

This news clip is highly recommended! Jean Lewis and Bohdanna Popowycz did a thoroughly outstanding job of laying out BC’s autism reality today.

Topics covered in the show include the BC Supreme Court Auton case, individualized funding, education problems — including the huge obstacle of BCTF and CUPE unions — as well as the forsaken treatment rights of older children … as in kids six and up! Also discussed in the program is what it takes to be a GENUINE autism treatment consultant and the treatment funding children with autism receive in the U.S., i.e., $75,000 per year in Wisconsin.

Thank you also Debra (Antifaev), for tireless effort to keep this important issue in the media.

PLEASE NOTE: CKNW’s Bill Good autism program segment is on the web for the next seven days only (aired September 4, 2002).
–>http://209.115.161.208/cgi/vaultfile.cgi?3-13

Please ‘fast forward’ to the autism segment in the show by sliding the Audio Player’s scroll bar to the 32:30 minute mark in the program.

Any thoughts on all this? Please share with the discussion board group … there are lots of folks listening.

Isaac (Miki’s Dad)

[Isaac]

From the Toronto Star, http://www.thestar.com
**********************************************

Jun. 25, 01:00 EDT

Ending autism therapy `wrong'

Caroline Mallan
Queen's Park Bureau Chief

Ontario's health minister was confronted yesterday by parents of
autistic children who they say are being denied essential medical
services in the form of expensive behavioural therapy.

Tony Clement was confronted outside the Legislature by more than
a dozen parents and their children. They protested the current
policy of funding the Intensive Behavioural Intervention program for
only a small number of autistic children and only up until they reach
age 6.

Norrah Whitney, a Toronto single mother whose 6-year-old son
Luke is autistic, demanded that Clement order the province's health
insurance plan to pay for Luke's treatment, which costs an average
of $60,000 per year, per child.

In January, Whitney filed a complaint with the Ontario Human
Rights Commission arguing that cutting off treatment at age 6 is a
violation of human rights.

Clement said the program, also known as Applied Behaviour
Analysis, is part of the family and children's services ministry and
deferred the issue to Children's Services Minister Brenda Elliott.

Parents say their children's needs are medical and they should be
entitled to the expensive one-on-one therapy regardless of their age,
and that it should be paid for by OHIP.

"Tell my son that he doesn't deserve medically necessary treatment.
You know this is wrong," said Whitney, holding up her son Luke
inches from Clement's face.

Clement said he could not talk about the funding given the matter is
before the courts. "Do not hide behind court cases, these children's
lives are on the line," Whitney said.

The intensive approach involves trained therapists working
one-to-one with a child, reinforcing correct behaviour, language and
academic skills. Children typically require several years of
treatment, but studies show the therapy can produce significant
results — nearly half of autistic children can be taught to function
normally. Most of the other half will show some improvement.

NDP critic Shelley Martel called on Clement in the Legislature to
fund the program for all of the estimated 900 children between the
ages of 2 and 5 who are on a waiting list, in addition to children
who have already turned 6 without ever getting access to the
treatment.

[Isaac]

In the Toronto Star today …

Isaac (Miki*s Dad)

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Parents demand improved services for autistic children
Families frustrated as long waiting lists plague $39 million Ontario program
Patricia Orwen, Social Policy Reporter

Little Nadia's forehead is covered in bumps and bruises. And they weren't inflicted accidentally.

Like many children who suffer from a neurological disorder known as autism, the 2-year-old Toronto toddler has no way to communicate. She repeatedly bangs her head against the wall in frustration.

Two years ago, the province allotted $19 million for treatment to help children like Nadia improve their speech and social skills. Last spring, it more than doubled that amount to $39 million. Today, Nadia's family is among many wondering why, with all that money, the waiting list for treatment in Toronto can be several years long, and when the child reaches age 6, that funding is abruptly cut off.

"I've been told she's number 580 on a list of 600 and two years is a typical wait," says Nadia's mother, Marianna Ofner-Agostini.

"That's time we just can't afford to take…. We'll just have to remortgage our house to pay for it ourselves … it's senseless and frustrating."

Ofner-Agostini and others are demanding that Ontario's Intensive Early Intervention Program for Children with Autism provide faster service and continue that service beyond age 6.

Autism is a neurological disorder that affects several thousand children in Ontario. Autistic children typically have difficulty with speech and are often unable to learn even simple tasks.

The therapy in use in Ontario is known as applied behaviour analysis. Pioneered in the United States by Dr. Ivar Lovaas more than 30 years ago, it involves intensive sessions in which a therapist repeatedly reinforces appropriate behaviour, language and social skill with the child. Autistic children generally need two or three years of such therapy, which costs between $45,000 and $80,000 a year.

Clovis and Sherron Grant filed a complaint with Ontario's ombudsman last week after being told that they could not expect to get treatment for their 5-year-old son Isaiah because their service provider, the Toronto Preschool Autism Service, told them that it can't get any money from the government. Isaiah has spent 13 months on the waiting list. His parents say they were told he is number 339 of 600.

"We have lost hope for our child receiving the early intervention that has been talked about so many times by your government … we feel deceived and let down by your department," the Scarborough couple wrote in a recent letter to John Baird, the minister of community and social services.

Last Thursday, Norrah Whitney, who is the mother of a 6-year-old autistic boy, filed a written request with provincial auditor Erik Peters to audit the autism program to determine whether the taxpayer's money is being spent wisely. Whitney also filed a similar request with the ombudsman.

Whitney has already filed a complaint of discrimination on her son's behalf with the Ontario Human Rights Commission. In her complaint, Whitney states that the government has violated her son's rights by failing to provide him with a medically necessary treatment.

When he was 5, Whitney's son, Luke Burrows, was given 30 hours a week of intensive one-on-one behaviour therapy under the government-funded program. He learned words, then phrases. And he began feeling comfortable socializing. Now that he is 6, however, that funding will not continue.

"He's not ready to go to school," says Whitney, a single mother who works part-time.

"He needs to keep up this treatment in order to develop his speech and social skills."

In an interview with The Star, Baird said that Ontario is doing more than any government in Canada for autistic children.

"I don't pretend that we are going to be able to meet every need, but we've gone from spending nothing three years ago to $19 million two years ago and then we doubled that funding … I can't think of any other program where we doubled funding in one year," Baird said, adding that he knew of only 55 children waiting for treatment in Toronto.

Ofner-Agostini, however, says this kind of thinking is shortsighted.

"If Nadia receives treatment before the age of 5, for a period of one to two years, she has a high probability of living a normal life. By spending now, the government is saving millions of dollars in the future. If these children are not treated now, they will need aides when they enter school and they may have to be placed in group homes or institutions later."

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