[Jenn Ralph]

With regard to "The Mother in Richie's World" article March 13:
It never ceases to amaze me that people don't recognize thier biases and blatant discrimination in mental health issues, especially autism. If we substituted autism for anything that resembled a more apparently physical injury/disease/disability, we as a society would be outraged, and the proper authorities would intervene to ensure the rights of the child. For example, if the child had cancer (and the mother/father/school board /doctors decided to "accept it" and make him "as comfortable as possible" instead of giving him treatment: Or, if the child had diabetes (which once had no treatment), and we all chose to "accept it" and "let it happen" and "that is who he is" and not provide insulin for treatment. Or if the child had an injury that broke a limb and we all said "it must be meant to be", and "any treatment to attempt to fix it would be painful so that must be wrong". The only way I can accept this philosophy in my mind is when Jehovah's Witnesses willingly deprive their dying children of blood transfusions to save their life due to a fundamental religious belief that this is wrong. Even in these cases, parents are completely informed: Your child will live with a transfusion ,and die without one. The problem with depriving autistic children of their treatment is usually uninformed. Until we treat our (as a society) autistic individuals as treatable and deserving of treatment to ameliorate the condition, we are all guilty of discrimination and neglect – of our most vulnerable, and precious, children.

[Jenn Ralph]

Following is from the Globe and Mail yesterday, Dec 18th, FYI. – Jenn.

Ontario court dissects recent autism ruling

Supreme Court decision denying therapy in B.C. not relevant, parents argue

By MARGARET PHILP
Saturday, December 18, 2004 – Page A9

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A massive trial pitting parents of autistic children against the Ontario government that had wrapped up three months ago was back before a judge yesterday, with lawyers reopening the case after a recent Supreme Court of Canada ruling suddenly altered the legal landscape.

After 130 days of arguments, lawyers for 29 families with autistic children insisted yesterday that last month's Supreme Court ruling that British Columbia could refuse to finance the costly therapy for children with autism has no bearing on the case in Ontario, where an $80-million program already serves autistic children under 6.

The families, whose sons and daughters are all older than 6, sued the Ontario government for failing to provide funds for the intensive one-on-one therapy called IBI once children reach school age. They allege that the policy amounts to age discrimination, and that the refusal of Ontario schools to allow therapists in the classroom violates the children's constitutional right to a public education by depriving them of the only treatment that research shows can help socially impaired autistic children function more normally.

Mary Eberts, a lawyer for the families, told the Superior Court of Justice that major differences between the B.C. and Ontario cases undermine the impact of the Supreme Court decision, known as Auton.

Unlike in Ontario, B.C. had no government program for autistic children.

And four years ago when the B.C. lawsuit was filed, the court considered IBI to be an "emergent" technique, not rated as a "core" medical service provided by a doctor or hospital covered under federal and provincial health legislation. On this basis, it ruled that the province bore no obligation to start providing it.

But the Ontario families say they are waging their battle as an education issue: Ms. Eberts casts it as a failure of a school system with a multimillion-dollar special-needs budget and a two-decade history of integrating disabled children into the classroom to provide the one therapy needed to educate autistic children.

She said the Ontario lawsuit has more in common with a Supreme Court case called Eldridge, in which the court found that deaf and hearing-impaired patients in B.C. were discriminated against when denied sign-language interpreters in hospitals.

"There is an exact parallel here," she told Madam Justice Frances Kiteley.

"The disabled children here that are supposed to be able to access free public education in Ontario are not able to access it because it is not being delivered in a way that they can get it.

"These children might be in the classroom, and the teacher might be standing there, but they're not getting what's envisioned by legislation."

The Ontario government disagrees.

Robert Charney, the lawyer for the Attorney-General's office, told the court that the Auton ruling undermines most of the families' discrimination claims.

As in B.C., he said, IBI is not a core service covered by health laws. And furthermore, as an intensive behaviour therapy delivered one-on-one by therapists under the supervision of clinical psychologists, neither is it covered under the Education Act.

In one of the few lively exchanges with the judge, Mr. Charney advised that IBI should still be regarded as an "emergent" therapy for preschoolers, and even more so for children over 6 where less research on the technique has been conducted.

He said the same questions are left unanswered by research as were being asked four years ago.

To this, Judge Kiteley asked how the Ontario government could invest tens of millions of dollars to fund a therapy it concedes is emergent.

Referring to a recent report by Ontario's acting provincial auditor that exposed lax oversight and waste in the autism funding program, she also wondered if the Ontario government could have answered some of those burning questions if it had monitored and evaluated its own program.

[Jenn Ralph]

This was the editorial in the Nov 30th edition of the medical post: (www.medicalpost.com for more info). I also noticed that there were 3 articles/letters published today in various newspapers (Times Colonist, Star Phoenix, and Windsor Star) re: autism, but i can only see the first few lines of each article (I don't want to pay $5 for each article on line!). Does anyone know how to read them online without paying, or can anyone post them? – Jenn.

——————————————————————————–
November 30, 2004 Volume 40 Issue 45
——————————————————————————–

OPINIONS / OTTAWA BYLINE

OPED: Legally correct court decision begs questions about morality

By Ken Pole

The Supreme Court of Canada's refusal to force public health insurance coverage of autism therapy raises fundamental questions about medicare's sustainability.

At issue was an appeal by the British Columbia government against lower court rulings in favour of four children who have been receiving a specific type of applied behavioural therapy (ABT). Developed by an American research psychologist, it costs up to $60,000 annually, and although a trial judge concluded in 2000 that it may yield "significant results," it is not universally successful.

Written by Chief Justice Beverley McLachlin and concurred in by the six other benchers, the high court ruling noted the cause and cure of autism "remain unknown." (A couple of days earlier, a study published in Annals of Neurology posited a link with an overactive immune system, which researchers say causes chronic inflammation and apparent brain damage.)

Despite the expense—including several therapies already publicly insured to some degree—the families at the centre of the case have been paying for much of the therapy. After lobbying unsuccessfully for full coverage, they sued the government in 1995.

Four years later, the government, acknowledging the importance of early intervention, announced an autism "action plan" but said the needs of autistic children had to be balanced with those of others. By trial time, that initiative had fallen afoul of budget cuts and bureaucratic rearrangement.

The trial judge eventually concluded that ABT was "medically necessary" and that denying it to autistic children while providing services to others contravened the Charter of Rights and Freedoms.

She said it undermined the "primary objective" of medicare, specifically the notion of "universality," and said "the only accommodation possible is funding for effective treatment." She directed the government to fund early therapy for autistic children but said it was up to the government, based on professional advice, to determine what was appropriate.

The province appealed, not only because of the anticipated cost of insuring services for some 2,500 autistic children, but also because of the prospect of "copycat" suits on behalf of others with special needs.

The B.C. appeal court agreed there was discrimination, adding that the government's position had created a "socially constructed handicap" that aggravated the families' financial burden. That set the stage for the final appeal.

Justice McLachlin expressed sympathy for the autistic children and their families. "However, the issue before us is not what the public health system should provide, which is a matter for Parliament and the legislature," she wrote. "The issue is rather whether the B.C. government's failure to fund these services under the health plan amounted to an unequal and discriminatory denial of benefits."

Over-ruling the lower courts, she called the treatment advocated by the families an "emerging technology" (it's been around for nearly two decades), and said it is not part of the "core, physician-delivered services" provided for under the Canada Health Act.

In reality, the Supreme Court had little choice in the matter, given the way the Canada Health Act and supporting provincial statutes have been written by our legislators. McLachlin noted that "all that is conferred is core funding for services delivered by medical practitioners and, at a province's discretion, funding or partial funding for non-core services.

While "it is not open to Parliament or a legislature to enact a law whose policy objectives and provisions single out a disadvantaged group for inferior treatment," she continued, a legislature "is free to target the social programs it wishes to fund."

The federal Liberals' health plank in their summer re-election campaign included a splinter proposal to protect Canadians against "catastrophic" drug costs. Can the same argument not be be made for families who face financial ruin due to other health issues?

It has been said the ruling makes "second-class" citizens of the autistic children and their families and, more fundamentally, undermines the validity of the Charter of Rights and Freedoms.

It also has been suggested that we simply cannot afford to have truly universal medicare. In an era of $9-billion federal surpluses, and given that we evidently hold medicare so dear, can we afford not to?

Ken Pole is an Ottawa journalist. E-mail him at ken.pole@sympatico.ca.

[Jenn Ralph]

Do not send any petitions to Raymond Chan. Their office finally got back to me as per my request to make sure he would table my petitions. Apparently because he is a minister of state (multiculturalism) in the Cabinet, he cannot table petitions. His office did say that he would be supportive of the petition indirectly by getting Hedy or Keith to table any he received…
Anyway, to be safe I just sent mine to Chuck Cadman (ind) and Gary Lunn (cons).
FYI – Jenn.

[Jenn Ralph]

Everyone – get the Saturday Vancouver Sun and read page G3, Michael Campbell's article on mis-managed government spending. Then write some letters to the editor equating this to the MCFD's waste of taxpayer dollars by not providing the right treatment for autistic children. (eg. the Ontario audit – gov't agencies spent $126/hour on useless therapy vs. parents spending $20/hour of proper ABA). Notice the gov't in media keeps saying "we have increased the budget by tenfold", and "we spend over $30 million on treatement for autistic children presently". Both of these quotes would lead the average Joe on the street to think, gee, I guess they are already funding the treatment…. Let's inform the taxpayers of this province that most of their $30M is being mismanaged and wasted, and to hold our gov't accountable. Below is the article in case you don't have the paper, I have re-typed it myself so pardon any errors:

"Misdirected spending is a bad way to say we care"
Michael Campbell, page G3, Vancouver Sun, Nov 27.

Three years ago, former auditor-general Denis Desautels stated that Canadians have a tendency to justify programs more by the money we spend than by the results we get. That's why so many millions of Canadians couldn't care less that the gun registry is a colossal waste of money, or that billions get wasted in health care every year.
Spending money is all about saying we care. We care about personal safety. We care about health. We care about the jobs at Bombardier. It's like we're all trapped in a Hallmark Card moment.
The trouble is that "caring" doesn't solve anything – only taking action does. This week, Sheila Fraser reported that with Canada's most profound failure, the Department of Native and Northern Affairs, we're caring so much that we spend about 40 percent more per elementary and secondary schooling on native students than on non-native ones.
True to form, we know very little about how the money is spent. The amount of funding isn't even linked to the number of students involved. We have no idea if the money is being spent effectively.
This would be just another story of mismanagement and lack of accountability to be filed beside regional development grants and advertising contracts, were it not for the fact that the results are so tragic.
In 2000, the auditor-general noted that aboriginal youth were failling far behind their non-native counterparts in terms of levels of high school graduation. In spite of spending more than $4 billion since then, nothing has changed. As Sheila Fraser sums up, "Four years have gone by since our last audit and things have not gotten any better. In fact, they have gotten slightly worse, and something needs to be done to address this."
Currently, the graduation rate among aboriginals is about 30 percent lower than the non-native population. The auditors calculate it will now take 28 years before first nations reach the same graduation leveles for people over 15 years old as for Canada as a whole.
Is this the sort of Canadian value that the elite love to lecture the rest of us about? We've helped produce a permanent, under-educated underclass with little hope or opportunity of bettering their lives.
This isn't about spending enough money. As is the case with many other government programs, we spend more than enough money but the results are abysmal. how many times have we read in the last five years about government programs enacted without clearly measurable follow-up? The results on aboriginal education are not the exception. Rather, I suspect, they're the rule – but the record shows that most Canadians don't care.
It's part of being a nation of posers where the pretense of caring for natives is far more important thatn the substance of doing the job. While the audior-general's report did mention some success, including the first nations education steering committee that represents aboriginals in B.C. on educational matters, the overall result should be unacceptable.
In reading the auditor-general's report I found myself wondering how anyone can be surprised. The problems are consistent, as is the lack of process. There are systemic problems with how government operates, but what is clear from the auditor-general's report is that we don't have the appetite to address the problems.

[Jenn Ralph]

Monika makes a good point – we should not waste any more seconds of our lives on these uninformed, ignorant losers who are on pathetic power trips that harm our children, ultimately. It seems to me, and anyone correct me if I'm wrong (I admittedly know very little about politics), that the premier is the only person who has any power to do anything. We should focus most, if not all, of our immediate efforts on him.
Feedback welcome…
Jenn.

[Jenn Ralph]

Debra – Awesome letter. Please also send it to the Ottawa and Toronto papers. BTW – apparently my intiital (more angry letter) made it in today's Ottawa Citizen (friend in Ottawa called to tell us) but I can't find it on the internet anywhere. For those of you out there who are more tech-savvy than me, any advice on how to find it online?
Jenn.

[Jenn Ralph]

Monika (and everyone).
This cost/benefit analysis is as relevant today as it was in 2001, in fact probably more so now that we are back to square one. I think if the public new more about this, they would be sufficiently, and rightly, angry about the current waste in the government with all of our tax dollars. This is the solution folks. Let's make it clear that treating autistic kids effectively is not going to break the bank. The money is there, NOW. They have the power to do the right thing NOW. I think this should be the thrust of most of our efforts in the near future. Thanks Monika for doing the work.

[Jenn Ralph]

Here is my letter to the province:

What most people don’t know is if the province funded effective autism treatment more efficiently, they could fully fund it tomorrow and probably save money from what they are spending now. Take the recent audit of the Ontario autism program: Direct funding to families cost one sixth the amount of the government agencies’ cost to deliver one hour of treatment (Globe and Mail, Nov 12, 2004). The auditor found that the government agencies cost an average of $126 per hour, but direct funding to the families cost an average of $20 per hour – to deliver the same treatment. Do the math. Currently in Ontario, it costs the government an average of $79,000 to provide 23 hours of treatment (although some were found to only provide as low as 13) through these contracted agencies. To think that BC, or any other province, would be any different would be naïve.
Mr. Campbell, here is your solution. Reduce the waste with the agencies contracted to provide these services, or even better, reduce the number of agencies by 90%. According to Madame Justice Allen in the Auton case, these bureaucrats are “ill suited” to deliver autism treatment and what exists now is well below “the gold standard” of care. Then, increase the direct funding to families who deliver the most efficient and effective treatments, from $20,000 to $60,000. There is your solution. You win (you are a hero by providing needed and effective treatment), your government wins (by saving money and being more efficient), and most importantly, the children win.

Jennifer Ralph

[Jenn Ralph]

Just to add to Barb's post about newspaper media, the following article appeared today in the Toronto Star:

Families of autistic kids deserve help

Canada's provincial governments are celebrating the news that they cannot and will not be forced to pay out hundreds of millions of dollars a year to treat autistic children.

But while the provinces' relief is understandable, they have not been absolved of a serious social responsibility — not one bit. The Supreme Court of Canada merely told them what their legal obligations are, what the letter of the law says must happen.

The judges did not spell out the moral imperative confronting the provinces. And when it comes down to morality, it is difficult not to conclude that more should be done to serve the needs of one of the most vulnerable groups in Canada.

Autism is a rare but debilitating mental condition that usually strikes in early childhood. While autistic children bring joy to their families, they also bring heartache, demanding an overwhelming commitment of time, energy and money. This burden is felt by the general public also. It has been estimated that 90 per cent of autistic children are eventually institutionalized at great expense to the state. The parents of autistic children do not expect pity. They do, however, expect help.

The therapy pioneered by Texas researcher Ivar Lovaas has produced life-altering results for many autistic children. The therapy's price tag is, unfortunately, exorbitant. It can cost up to $60,000 a year because it provides autistic children with one-on-one treatment for 20 to 40 hours a week.

In essence, the court said that no law requires the provision of medically necessary services. So, autistic children are not being treated unfairly under the law. It is hard to disagree with the logic of this court decision or with the vision of governance it reflects.

Yet it would be a grotesque distortion of this ruling to conclude that governments need only do what courts compel them to do. True, the expense for the therapy in question is daunting. But surely the needs of autistic children and their families deserve a place at the top of any priority list for any government.

Think of the government waste and bungling recited annually in auditor general reports. Think of the $101 million for two corporate jets for the federal government or the $100 million lost in the sponsorship scandal. Think of the $8.9 billion surplus the federal government will be holding in its fist at the end of this fiscal year.

And then forget the wrangling over federal versus provincial responsibilities. Just think of the autistic children and their families and you will likely agree that there is money in the provincial and the federal treasuries to help. It only requires a will.

——————————————————————————–
This is an edited excerpt of an editorial from The Record, Waterloo Region.

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