Below is a letter I sent this evening to CBC's morning man Russle Bowers in Prince Rupert. I've sent other similar letters to various national newspapers and TV stations. In the letter I've placed some quotes from this and other web sites.
I do not know if it will be aired. Time will tell..
Dear Russell Bowers
When I was waking up yesterday morning I heard you comment you were dreaming about the clash between good versus evil and which one would win? So I wrote this letter to help out the good side. But be forewarned it's a long letter describing a complex issue
please forgive the typos if there are any.
My e-mail is in regard to some comments made on the morning of the 24th regarding the treatment of autistic children and the decision of the Supreme Court of Canada.
It relates to the commentary about treatment of kids with autism, and excluding them and their families from government assistance. While I'm not a great believer in hand-outs, when it comes autism and assistance in Canada you're on your own baby
thus government assistance makes critical economic sense. I will elaborate on this point later in this letter. For alternative assistance, I do not know of a private insurance plan that covers autism's treatment — in fact many people consider autism untreatable. Presently, the province is providing some assistance to some families but with the court's ruling this may soon evaporate.
My appeal to you is for you to read this letter in whole or in part to your audience, at your option. The public should be aware of what is happening around them regarding this important issue. I know this topic is not the most palatable in the early morning, but I have hope the good will indeed win over evil. So let start with good and evil. How do I define the difference between good and evil? It's simple. Good takes care: evil does not. To turn ones back away from helping a needy child is evil
.no exceptions.
Let me open this letter with a few comments that I pulled off the net last night.
The first one is from a friend south of the border.
"Dear Canadian family members:
The battle is not over. Somewhere in my heart I feel this will not going to be the end. The judges fail to acknowledge they could be the next to have a family member suffering from autism. You guys need to go to the media (and so do we). It is "all about the money" for them, for us, it is a life or death situation, it is our kids future what is on the table.
Do not loose hope, keep up the fight. Go to the media, let the public meet those recovered kids, those kids that although not recovered, show amazing gains. Let the public know the pain a parent will endure if their child do not get treatment, let them know they could be next…
For us in America, this is a wake up call ! Money is running out, budgets get tighter every year and the legislation here is still not clear of whether we should get funding or not. WE NEED A LAW THAT CLEARLY WARRANTIES FUNDING for ABA. We need to go the media too, we need to be proactive, before we too, get a slap in the face like this…
Marlene."
And now from the BC legislature:
"Following is the hansard from Nov 23rd: FYI:
The Deputy Chair: Resuming debate, the hon. member for NanaimoAlberni.
Mr. James Lunney (NanaimoAlberni, CPC): Mr. Chair, it has been a long night for everybody. I am glad to be able to participate in this debate.
I want to bring up an issue that we started the day with today. It is a very important issue for quite a segment of our population. It has to do with the subject of autism.
This morning we had the Autism Society of Canada here. We had alarming statistics being brought forward. We have seen at least a tenfold increase in the last 10 years and in some areas the numbers are even a hundredfold and more. We
know that autism used to be so rare and now in many classes there are two or three children with autism, at least in British Columbia where my wife is a counsellor in the elementary system. It is a huge problem. "
Yes it's a huge issue but it just does not stop there. Here's another related issue.
"Accordingly to the American Declaration of the Rights and Duties of Man, Canada being a signatory to this Declaration,
CHAPTER 1, Rights – Article VII
ALL Women, during pregnancy and the nursing period, and all children have the Right to Special Protection, Care and Aid.
My question is: Where did the Supreme Court of Canada receive their authorization to violate and circumvent this Declaration?"
I warned you that this is going to get complex. Here is another issue
"SUPREME COURT BETRAYS EQUALITY GUARANTEES
MEDIA RELEASE
THE SUPREME COURT OF CANADA DECIDES THAT AUTISTIC CHILDREN DO NOT HAVE A RIGHT TO HEALTH SERVICES
(Toronto – November 19, 2004)
LEAF (Women's Legal Education and Action Fund) and its intervention partner DAWN (DisAbled
Women's Network) Canada say that this morning's decision from the Supreme Court in Auton v. British Columbia is devastating for all disadvantaged persons. At issue is
whether the B.C. Government's refusal to fund health services to ameliorate the effects of autism violates the equality rights of autistic children, rights guaranteed in the Canadian Charter of Rights and Freedoms. The Court
found that the failure to provide autism related health services does not constitute a breach of the Charter's s. 15 guarantee.
The Court's decision has turned back the clock by decades on equality rights progress in Canada by its ruling in Auton. The Court has applied a narrow and formalistic interpretation of the equality guarantees in s. 15 of the
Charter. The critical flaw with the Court's reasoning lies in its narrow conception of health services – it endorsed a conception of health services that is focused on the able-bodied norm, and accepts that norm instead of challenging it as exclusive and discriminatory. It takes
the current health services framework as natural, and the implication is that anything outside of it is "extra" or "abnormal".
The LEAF/DAWN argument was that the government discriminated because it failed to respond to the needs of autistic children – the Court found that there was no s. 15 breach because the services were not provided – this kind of restrictive and circular reasoning is a betrayal of the Court's early promise to apply the equality guarantees in a broad and purposive manner. The Court's concept of equality recognizes only formal equality, everyone has the equal right to sleep under the bridges.
The Court justified its reasoning in part based on the novelty of the services at issue. The disadvantaging effects of failing to provide the services in this case were clear. Governments should not be allowed to stall the provision of equality because a service or treatment is new.
As a result of the Court's decision, disabled persons are to be treated as second-class citizens because the Court did not acknowledge that the health system privileges the able-bodied. Autistic children in particular will remain at risk of isolation and institutionalization. The negative effects will be compounded for girls with autism. For
example, women with autism who are institutionalized are likely to experience one of the most serious forms of gendered disability discrimination – the physical and sexual
abuse that is prevalent in institutions.
Counsel for LEAF and DAWN are Dianne Pothier and Fiona Sampson."
But how did it come to this? Did these issues just spontaneously appear out of thin air? No. They have been brewing for some time below the surface, out of media and public attention just like an iceberg.
No doubt some will claim that letters such as this one can be counter productive and act to inflame the situation; and more study and research is needed. I believe this type of belief is at the peril of many children who can not speak for themselves and who can not afford delays in treatment. The heart of this issue is the perceived cost versus the benefit of treatment of these children. The cost appears presently to be overshadowing the duty of care of the government to provide proven treatments that can work and are cost effective in the long run. As a result a tremendous burden is placed on the parents. This will become more evident to the Canadian public as time progresses — a burden to not only to fight children, financial survival, to battle with policy makers, but also to battle with the government in courts and win twice only to be over ruled by the Supreme Court. Children who's numbers are exploding across our country, and who can not afford time for policy and common sense to catch-up with judges or not so good judgements.
For starters, Canadian's claim to have one of the best health care systems in the world is rapidly getting tarnished by court decisions as a the Supreme Court's. The reality is many behavioral treatments, such as Lovaas ABA are available to our neighbors to the south through court actions by families, in the U.S. When it comes to treatment for autism, the US health care system appears surprisingly superior to Canada's. From the autism's perceptive, the perception of Canada having one of the best health care system in the world raises some eye-brows. The Canadian court seemed to cave in from the fear of setting health care policies and imposing an unworkable component to our health care system. This is based on a trade off between the perceived cost versus a benefit from a treatment that has been scientifically validated with positive results for over 30 years. It's a trade off between money and human suffering and hope.
As for the economical fear and basis for such legal arguments it only gets worse. I included a quote from another concerned Canadian because his message strongly aligns of how I see the economic basis why governments will not necessarily have to be fiscally accountable through legal processes for treatment of these kids.
"Truth is here and is what lost at the Supreme Court of Canada. Treatment for Autistic children costs $60000.00 per year. Treatment lasts 2-10 years. Costly? Yes. Cost of not treating + 30000.00 a year for supports during childhood and then 70000.00 a year for the entire adult life to institutionalize. 90% of Autistic people will be institutionalized. More than 50% of those treated will recover enough to not need institutionalization if they have timely and effective treatment. Cost benefit to the taxpayer is more than obvious in the long run. Our governments are saving $s today but it will cost us about 7 times as much down the road. Cost to the people suffering with this disease – beyond your imagination. We are a nation who are now paying 7 times as much money to harm children with a brutal disease than it would cost to save them."
However, this letter is not only about the legal issues of this case, but something much larger – good against evil. The aim of this letter is to highlight the huge communication and knowledge gaps that presently exist between what is presently accepted and what is known by doctors and parents who have successfully treated their "autistic" children to such an extent that these kids are no longer classified as autistic. Much of present day medical practice still considers it impossible to treat or recover from autism — this highlights the knowledge gap and the lost opportunity to help hundreds of thousands of autistic children across Canada. That is why it's important to get this message out to the public. Doctors in Canada are not trained to treat this condition, eventhough evidenced based medical research using double blind placebo controlled studies has shown that effective treatment are available.
The Communication Gap: It is hard to deny that autism is not a serious problem. During the past 15 years, health authorities in the U.S. have reported large increases, above 1000%. As far back as the 1980's experts in California posed the question of why are the rates going up so fast.( California is sited because this state keeps the most detailed records on autism in North America). Is this because of changes in how autism has been defined or an actual greater incidence of number of autistic children? As mention previous increase in regions of more than a 1000% in the past ten years are not uncommon. Is there actually an epidemic? The in California over tens years ago concluded that there is actually an epidemic of autistic children. Such increases cannot be explained solely from how autism is labeled or purely by genetics — genetics alone can not account for such a large increase in such a short interval, Epidemics are never purely genetically based, although it's clear the genetic and environment factors both play important roles. The official numbers from Statistics Canada are least 1 in 199. In the U.S. the Center for Disease Control in the U.S. officially reports 1 in 166 live births and increasing. In the town where I live one of the schools has a 1 in 70 rate. This translates to hundreds or thousands of cases in Canada and millions of U.S. children and families being effected with a serious neurological disease. What we are witnessing is a rapidly increasing rate of the presently most common serious neurological disease in infants and young children. Yet our health system and court so far have failed to recognize and to act in a good way.
Is this normal or acceptable? Certainly not. Yet I'm amazed how little is being reported in the news, only now because of the court case is it starting to finally appear in the open for other reasons.
So why should most Canadians care? Because it is only a matter of time — actually my estimate is under 50 years if thing continue at the present rate — before the vast majority of Canadians will be personally affected by someone in their extended family who has autism.
The Knowledge Gap: Presently standard medical practice does not mention or teach that autism can be treated, if caught early enough. The vast majority of doctors in Canada have not receive training how to treat this condition. Common medical practice espouses that autism is primarily genetic, and that little can be done to treat it. However the because the rapidly increase of the rate of autism as stated above make this comment a medical impossibility. Medical experts claim that a purely genetically induced epidemic is impossible, as we are witnessing presently witnessing with autism.
It's because of the enormous suffering of children, and parents, some of whom are doctors, that evidence is pointing that autism can be treated if caught early in most case. Presently autism is not medically screened for despite being so common. Others who argue that more research is needed have not done their homework or considered that the life long wellbeing of thousands of children across Canada is at stake. Many change their minds once personal family children get struck with this condition.
The Supreme Court's decision makes it much harder for parents to get funding for effective treatments such as Lovaas Applied Behavioral Analysis, even though it has been used successfully to behaviorally treat autism. The treatment has been in used since the 1960s but largely has been scoffed at by standard medical practice until only recently. For most of this time it was not supported. Most of its acceptance only happened after parents went to court to fight for their children to show that improvements from this treatment can be significant. It has taken 40 years for the U.S. Surgeon General to state that Lovaas based ABA therapy is the most effective treatment these kids.
Many biomedical treatments for autism also began largely in the 1960s. Some of these have shown some success — using double blind controlled studies — but again who is really listening and why is this not well known. As acceptance of these treatments grows, these treatments are pointing out causal risk factors of autism. Many are human induced. Medical research has shown that a significant percent if not most autistic kid have a large list of serious chronic medical conditions: heavy metal poisoning, leaky gut syndrome, food sensitivities, basic myelin auto-immunity and other auto-immunity conditions, Krebs cycle dysfunction. Sadly very few of these kids in Canada are tested for these conditions. Most of the time testing is done in the U.S. and is not covered by health insurance, yet these are medical conditions and most conditions are treatable if caught early. However the causal implications are staggering. Who can admit to that the root cause of the majority of autism cases can be human induced?
What about public policy?
The economical arguments claiming that Lovaas ABA therapy is too expensive just does not hold water. The maxim that claims "an ounce of prevention is worth a pound of cure" is greatly applicable in this case as was stated earlier. The choice is simple: either treat kids while a positive difference can be made or pay much higher expenses to place them for life in homes for the disabled. The former option makes much better economic sense. And who can forget the sponsorship scanner, or BC's Fast Ferries debacle. Millions of tax' payers dollars were wasted…where has common sense gone? Tax waste or invoke a cost effective benefit to treat needy kids and help families?
As for the courts setting public policy, families have had to go to court because the politicians and the policy makers have not been listening and because the high prevalence of autism is a recent phenomenon. Now the parents and kids have been let down
but the issue is not going away, it's only going to get worse getting worse, and hopefully it will get better. I'm an optimist and believe it will, however at the price of much needless suffering.
In my opinion, to maintain status quo is comforting so why rock the boat. The politicians and now the courts can wash their hands and can breath a sigh of relief — let the burden of healthcare stay with the children and families. The courts have had their chance, the low courts seemed to have it right and but the upper blew it. Positive steps could of being are taken: thousands of kids could have been helped cost effectively.
Meanwhile thousands of mothers, fathers and their children across our fair land could of gotten something better than what happened when the Supreme Court made it's famous but not so good decision.
Thank you Russell and CBC considering to read this letter on this critical medical issue, but there is much more positive work that needs to be done to help the needy. Thank you
some greater good has just been done.
Sincerely
Matt Siska
.
