[Monika Lange]

With respect to Isaac's comments about anything we post going straight to senior Government hacks… Good, I'm happy to hear my previous comments about Minister Linda Reid were fast tracked straight to her. Sometimes it's great to exact your pound of flesh. How absolutely horrendously evil that the Government insists on getting theirs from handicapped helpless children. Michael Smyth called it "winning ugly". The BC Government's stand on this is the dirtiest ugliest fighting I have seen in my life.

[Monika Lange]

Re: Act BC
This is all I need to know:
1. Pat Mirenda – crown's star witness – specifically discredited by the Supreme Court
2. Jo-Anne Seip – POPARD – specifically discredited by the Supreme Court

Geez, someone tell me how to post anonymously. I couldn't figure it out.

[Monika Lange]

Jean Lewis just did a radio interview on CFTK, a northern station. She did an excellent job of getting our points across! Thank you very much Jean.

[Monika Lange]

Hi Barbara,
As far as I know the only place to test for Malignant Hyperthermia is through a muscle biopsy in Ontario. I would just make sure the anaesthetist is on the lookout. Should be safe at Children's.

[Monika Lange]

I sent this note to Alison regarding anaestheic experience with my son. Thought it wouldn't hurt to send it to everyone else too:
I thought maybe I should tell you a couple things about my son's experience with anaesthetic/sedation, just in case the experience is common amongst autistic kids. First, usually kids are given a pill to sedate them (valium or equivalent) before they go into the operating room. The sedative had exactly the opposite effect on my son. It made him absolutely buzzed and hyper. The anaesthetist told me it is common for autistic kids to experience an opposite effect than usual. Second, my son could have died last time he was anaesthetized because he has a condition called Malignant Hyperthermia. This is a reaction to gas anaesthesia or sedative pills. It causes the heart rate and blood pressure to dramatically rise and if not detected within the first 15 minutes of onset, can kill. It is not usually detected the first time a child is "under" because it has a cumulative escalating effect with each subsequent anaesthetization. Intravenous is the only anaesthetic my son can have safely. You might want to talk to your child's anaesthetist and tell him you would prefer IV only… or at least caution him to be on the lookout for Malignant Hyperthermia. I have no clue whether these things are common to autistic kids, but other things (eg, Celiacs Disease) seem to be corelated so you never know.

[Monika Lange]

I've sent a letter to the editor of my local newspaper, and I am thinking some of you might like to try to solicit more petition signatures this way too. Especially small town newspapers, as they may be more inclined to help.

Open Letter to All Kitimat Residents:

I am the mother of an autistic child, and I am writing to ask for your help.

Autism is a devastating disorder for children and their families. An
autistic child usually has severe behavioural and sensory disorders, a lack
of language development, and the inability to socially interact. It is a
neurological brain disorder that causes pathways in the brain to be
disabled. With intensive early intervention, these pathways in the brain
can be reformed and a child with autism can be rehabilitated. If treatment
is not early or intensive enough, the child grows up to be mentally
handicapped for life, at a huge expense to society.

A scientifically proven treatment exists, and this treatment is by far
cheaper than lifelong institutional care. Your government refuses to pay
for it. The government’s choice is to pay now, or pay later – to the tune
of millions of dollars per individual for lifelong institutional care. The
government has chosen to pay later, with devastating effects to autistic
children, their families, and your tax dollars. Decades of scientific
research at UCLA, the world’s premier research centre for autism, have
proven that 87% of autistic children can be rehabilitated. This would save
taxpayers millions of dollars for every person who receives the treatment.

There are many children in Kitimat who suffer from autism. For those
children, it is a life sentence of neurological hell. Please take a minute
to sign a petition calling on government to fund this treatment, and help to
give kids in your community a chance. And please forward the website to all
of your family and friends by email. The petition can be found online at
http://www.petitiononline.com/mod_perl/signed.cgi?andap1

This petition will be presented in the House of Commons by your Member of
Parliament. Remember, your tax dollars are already carrying the burden of
this disability, but children remain untreated. Early intervention would
cost far less, and would give kids a chance to become contributing members
of society. Please help.

[Monika Lange]

Re: Municipal Council Meetings
I work for city council in Kitimat. I have many letters of support from the year 2000 for ABA treatment that were written by municipalities either to the Premier or to Kitimat Council. The letters were in response to Kitimat's Mayor writing to all municipalities in BC asking for support on this issue. If anyone intends to approach their council, I could fax you the letter your council wrote. You could open your presentation by thanking them for their letter and asking them for continued support. The letters were written by government to government and as such are a matter of public record. If you want your council's letter, please email your fax number to me at mlangedok@hotmail.com

[Monika Lange]

Hi Justin,
How about this quote, followed by the David Suzuki quote (on FEAT website in Brief to MPs – something to the effect of "it used to be considered a life sentence, but now we know it can be lifted"). Credit to FEAT for most of the following quote too (I can't believe my plagiarism is a reoccurring theme; how very very embarrassing!):

"A highly effective treatment exists to treat autism. This treatment was pioneered and developed by Dr. Ivar Lovaas at the University of California. Lovaas treatment, officially termed “Applied Behavioural Analysis Treatment’ (or ABA) has been scientifically proven effective in treating young children with autism. 47% of children who begin this treatment before the age of four lose their diagnosis. Another 40 percent will pass their grades in school and function independently as adults. In other words, an 87% success rate. It should be noted at this point that ABA is the ONLY scientifically proven effective treatment. The current autism industry in BC is neither scientifically proven nor effective – it carries a rehabilitation success rate of about 2%, which is the same success rate experienced spontaneously without ANY intervention."

[Monika Lange]

Andre Picard at the Globe & Mail wrote an article I didn't particularly like. My response was as follows (his article is below my response, as well as his email address in case you want to give him a blast too):

André,

Parents did not want to go to the Supreme Court for autism treatment, it was their only choice. If the government is suffering ill effects politically as a result, they can blame themselves. It is never wise to put someone in the position where they have absolutely nothing to lose – and everything to gain – by going to court. It was our legal right to do so, and Constitutionally speaking, that set of laws specifically exists to prevent government malfeasance. What other recourse does one really have when that happens?

Now, considering the issue that was before the Court, specifically whether it was discrimination to deny autistic children treatment, if you take the statement, “Autistic children are not entitled to medically necessary treatment” – and replace the words “autistic children” with any other definable group in society – for instance: women, the gay community, the blind, seniors, african-americans, catholics – you can bet there would be an uproar. Why? Because it clearly is discrimination against the Charter. So it is too with autistic children."

The bottom line is that money talks. In that respect, every taxpayer in BC should be outraged for at least two reasons: First, $30 million of your tax dollars are being spent every year on autism services that are ineffective crap, while the government refuses to fund the one program that isn’t. Secondly, this amount does not even include the money (again, your tax dollars) spent each year on group homes and round the clock care for autistic adults left untreated. All those children left without treatment grow up and live in institutions at your direct expense. The BC Government has been speaking out of both sides of its mouth – saying we want to help but relentlessly failing to put its money where it’s mouth is. A lot of say, and no do.

I don’t think we’ve lost the battle at all, because press I’ve read states the court battle morphed into a larger power struggle. Although the autism community fell in a pile of court poo, we will come out smelling like a rose in the political end. We are undisputably a powerful force in our own right, because we are fighting for what makes sense and we are fighting for what is right. The truth always percolates to the top.

Monika Lange
Parent of an 11 year old autistic boy

Principle, not emotion, ruled when our top court refused force B.C. to pay for treatment for autistic kids
By ANDRE PICARD

Thursday, November 25, 2004 –

Page A21

The Supreme Court has done a great service to all Canadians by refusing to

force British Columbia to fund a specialized treatment for autistic

children.

The decision is not cold-hearted or mean-spirited; on the contrary, it is

principled and thoughtful. The court has stated, unequivocally, that the

decision to fund or not fund specific health services is a matter for

Parliament and provincial legislatures to determine.

That governments should govern is a fundamental aspect of democracy. That

the Supreme Court of Canada would forcefully restate that principle —

without being distracted by the heart-wrenching plight of autistic

children — is a welcome dose of common sense.

Now, hopefully, the ruling will inspire wishy-washy elected officials and

their prevaricating bureaucrats to actually make some decisions.

Governments need to show the same backbone as the court and get on with

the business of reforming medicare in a systemic, sensible manner.

When the medicare system was created, only physician and hospital services

were deemed medically necessary. The guarantee of these "core" services

was later enshrined in the Canada Health Act. This, of course, has not

stopped individual governments from providing more — home care,

prescription-drug plans, palliative care, diagnostic imaging,

physiotherapy, optometry and even the ABA/IBI treatment for autistic

children (also known as the Lovaas method) that was at the root of the

B.C. court case.

But it is clear that a publicly funded system cannot provide for every

health-care need of every citizen, and the decision to fund programs, or

not, remains at the discretion of government.

The problem is not with the principle itself, which is sound. The problem

is that, over the years, funding has been decided in a piecemeal fashion.

Every review of the medicare system since its inception has underscored

this problem. Governments need to decide what is in the basket of services

— essentially, what is funded by medicare and what is not. More

importantly, they need to create a mechanism for determining what will be

added (and removed) from the basket of services so that medicare remains a

flexible, vibrant social program — one that can react swiftly instead of

dithering.

Right now, the legislative underpinning of our medicare system is caught

in a time warp, a 1950s model of health care being delivered exclusively

by doctors and hospitals.

There is no question that the Canada Health Act must be amended, or

supplemented by additional legislation.

But the response to the autism ruling has been cynical and misguided.

There have been calls to amend the Canada Health Act specifically to

include autism treatment. That approach is ridiculous: Are we going to

amend the law each time a new treatment comes along?

Many people seem to have missed the point and the importance of the

Supreme Court ruling. The court did not rule on the validity of Lovaas

treatment. Canada's top justices are not child-haters, nor are they

discriminating against autistic children.

The reality is that there are many perfectly valid therapies that are not

funded, or only partially funded (and some dubious ones that are) in

various jurisdictions. Is partial funding for the treatment of autistic

children really any different from partial funding of home-care services

for people with Alzheimer's?

The reality is that we have too few ways of measuring the benefits —

absolute, relative and cost-effective — of new technologies and

therapies. There are some superb scientific agencies such as the Canadian

Co-ordination Office for Health Technology Assessment, but they can

examine only a tiny minority of techniques. (And CCOHTA's report on autism

treatment is worth reading: It gives the Lovaas treatment for autistic

children a lukewarm review, saying it appears to benefit preschoolers but

notes that much of the methodology of studies is of dubious quality.)

What is required, beyond objective scientific studies, is a

decision-making body, one that decides what should be included in the

basket of services. A good model for this is the Canadian Expert Drug

Advisory Committee, an independent group that counsels the provinces on

which prescription drugs should be covered by government drug plans.

The important underlying issue, of course, is that governments need to

make decisions — and make them promptly and in a transparent manner.

Health-care dollars are not unlimited, and provinces and territories need

to be able to allocate scare resources as they see fit, even if doing so

is going to upset some people.

The last thing we need is for the courts to be deciding, on a case-by-case

basis, what the medicare system should cover.

apicard@globeandmail.ca

[Monika Lange]

Dec 2000 – Hansard transcript
Quote by Linda Reid:
“I certainly hope there is something else funded other than the costs of the appeal, that there will be on the ground dollars for these families in the very near future. The bottom line is that these are enormous challenges and the government walks around it in terms of a pilot project or a reference to it. This is where the rubber hits the road in terms of a stated commitment that has some solid implementation to it. Is it a health issue? Most definitely.”

[Author]

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