[Jenn Ralph]

Following is the hansard from Nov 23rd: FYI:

The Deputy Chair: Resuming debate, the hon. member for Nanaimo—Alberni.

Mr. James Lunney (Nanaimo—Alberni, 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.

The families of autistic children have of course suffered a great disappointment with the Supreme Court decision on treatment that has just come down. That particular treatment option deals with behavioural modification, a very intensive behavioural analysis. It costs about $50,000 to $60,000 per child.

More needs to be done to head this off early and intervene early so that we can prevent this catastrophe for families and for these children. That being said, I wanted to highlight that and ask the minister where the health ministry is going with this.

Just recently in the last weeks the New York senate commended and honoured Dr. Joan Fallon for a new study. It was the patenting of a process for early identification of these children and it involves a simple stool test. It has to do with pancreatic enzyme deficiency. This is very promising in the treatment of these children, with enzyme treatment improving their function.

What is the ministry doing to help head off this problem of autism? Are we doing something? Is there a strategy? Are we putting money through the CIHR or some other agency into identifying the cause of autism for these children and the appropriate treatment? By the way, Dr. Joan Fallon is a chiropractor. Along with the enzymatic treatment she does use manipulation of these kids as well. Is there a strategy and is something being planned?

Á (2350)

Hon. Ujjal Dosanjh: Mr. Chair, this is obviously again a very difficult issue. In health care we deal with difficult issues from time to time. I was in fact part of the government in British Columbia when the case that recently came before the Supreme Court was decided. The case originated in British Columbia. I believe I was the attorney general. I had to deal with that difficult issue then.

I have said that I am happy, prepared and willing to meet with the parliamentarians who are trying to argue for a national strategy on this issue, with Senator Munson and others from all political parties. I will be meeting with them. I will be listening to them. I am happy to actually listen to the provinces from across the country.

I spoke to a constituent of mine several weeks ago during one of my constituency days. He has a 12 year old or 13 year old autistic child. The man was in tears. There was not much I could do as a federal politician. These are provincial jurisdictions and the provinces and territories make difficult decisions and difficult choices.

But I am prepared to take a leadership role at least in terms of coordinating our response across the country and discussing what we collectively as leaders in different levels of government can do.

Mr. James Lunney: Mr. Chair, a lot of serious concerns have been raised about what is causing this escalating epidemic, really, of autism; that is probably not the right terminology, but the numbers are escalating unbelievably.

There are concerns about the repeated use of antibiotics for childhood ear infections. That may be a root cause. There are concerns about the vaccines that are administered, about the thimerosal or the mercury that is used in the vaccines. Some states in the U.S. have demanded that they start producing vaccines without mercury derivatives, which are highly neurotoxic.

I hope that there is someone, and why should it not be Canada, leading the world in actually addressing these issues, finding out if there is a root issue, doing some proper studies and making sure we get appropriate intervention for these children. Why should it not be Canada?

That being said, I want to go on to another issue that I believe is very important. We had a little talk today about health promotion and prevention by the member for Brampton—Springdale and the member for Dartmouth–Cole Harbour.

I want to say on the Food and Drugs Act, subsections 3(1) and 3(2) and schedule A, which continue to obstruct delivery of natural health products, that we understand the justice department has indicated that these sections are not constitutional, that they will not stand a constitutional challenge. There is a private member's bill that would change this.

The transition team asked for changes to this law. Is the minister prepared to acknowledge these sections are not constitutional and adopt the provisions of Bill C-420 to change the way we regulate natural health products?

Hon. Ujjal Dosanjh: Mr. Chair, I want to say I appreciate the member's concern about autism. He shared some of the statistics that he had with me on the plane ride here to Ottawa early this week.

On the issue that the member raises, I am not aware of the details and the constitutionality or not of the provisions that he speaks of. I will be happy to take a look at them and speak to him in the fullest possible way I can.

[Translation]

The Deputy Chair: It being 11:53 p.m., all the votes are deemed to have been reported, pursuant to Standing Order 81(4).

The Committee will rise, and I will now leave the chair.

Á (2355)

[Jenn Ralph]

FYI – I just had to email CKNW re: their lack of allotted time for Geoff Plant to take calls:

I am a quite disappointed in your lack of allotted time for discussion of the Supreme Court ruling on Autism and calls allowed to Geoff Plant.
This is a HUGE issue that affects thousands of children, and this was an opportunity to finally challenge Mr. Plant on the inaccurate fiscal doom-and-gloom forecasts that he used successfully in the Supreme Court, that went unchallenged.
While he was scheduled to be on right after the 8pm news to talk about this topic, you began the first 10 minutes of the program (from 8:08 until 8:18) talking about the grow-op issue, which you even said was going to be a 2 hour show tomorrow night! You kept going on about it, and how you wanted to plug the show tomorrow night, and you took up precious time that could have been used toward educating the public to the truths of the autism case and the children.
Yes, you asked him to stay 10 minutes longer, but much of that was taken up by commercial breaks and one caller who diverted AGAIN to the grow-op issue.

Were you “advised” to limit access to the autism issue?

I would appreciate an honest answer.

Please do as much coverage of this as possible. The children can’t fight nor speak for themselves, and it is up to me, and all of you, to do everything you can to raise this issue and have truthful, honest debate. There are solutions to this issue, and we need media like you to help.

Sincerely,
Jennifer Ralph
604-812-4341

[Jenn Ralph]

Thank you Avery and Dennis for calling in to Geoff Plant on CKNW – you were great. I would not have been able to compose myself and articulate as well as you two did tonight. For anyone that wants to hear it go to CKNW, then click audiovaults, then click on the date and time(8pm), then fast forward about 18 minutes. Too bad they let most of the show be taken up by the grow-op issue….but at least 2 very clear voices were heard over Plant's dodges.
Jenn

[Jenn Ralph]

Correction – Geoff Plant will be on CKNW radio right after the 8 o'clock news tonight…so probably around 8:05 or 8:10pm……FYI.

[Jenn Ralph]

Geoff Plant is on CKNW radio sometime between now (7:30 and 8, and will be taking phone calls….

[Jenn Ralph]

Barb – I have sent the letters to all 3 of those papers' editors.
And thank YOU, my dear, for all you have done over the last several years. My daughter is benefitting because of the tireless efforts of you, Jean, Sabrina, and all of the other "pioneer" families, many whom I don't even know who you are, so to all of you, again, we thank you from the bottom of our hearts!

[Jenn Ralph]

me again…we also sent the following letters to the CBC.

From: Doug Ralph [mailto:Doug@terra-nova.ca]
Sent: Monday, November 22, 2004 10:46 AM
To: 'sunday@cbc.ca'
Subject: Autism Story 112004

As a parent of an autistic child, I welcome any media attention portraying the plight of affected children and how they have been discriminated against. The better the understanding of the injustices, the more the governments across this country would be persuaded to do its part. That being said, after your story I am more frustrated than ever.

You, like the Supreme Court itself, have entirely missed the point and the core issues of autism and ABA therapy have gone overlooked once more. I am dismayed at the almost unanimously description of ABA therapy as a therapy “that some parents feel helps their autistic child.” Without a true representation of the therapy and the clinical data that supports it, the treatment is marginalized and not represented accurately.

Lovaas ABA has been proven by empirical data to be effective at treating this neurological disorder. The proof of its effectiveness is indisputable and this proof has been upheld in BC Provincial Court and the BC Appellate court where it has been deemed medically necessary treatment. The Supreme Court did not dispute this fact.

The discrimination is clear to anyone who knows these facts. The fact that the Auton case had been skewed and morphed into a constitutional issue where the government could defend itself with technicalities and antiquated definitions is a joke. Perhaps the most ironic thing of all, and typical of the many injustices parents of autistic children face, is that the case in the Supreme Court became an issue of the rights of the government. The right of government to spend their dollars the way they want. I thought it was supposed to be the rights of disabled children. Congratulations, Mr Plant. Well done. For he has not only won and protected the rights of the poor downtrodden government, he has muddied the issue sufficiently to deflect attention from the facts and to deflect attention from the plight of the children and the parents trying to care for them.

I expected more from your program. Your story did little to represent how many facts go unheard and just how shameful the government’s position is.

Doug Ralph

Richmond, BC

I had sent this one to Checkup@cbc.ca:
Please do a story on this recent ruling and the effects it will have on the current and future generations of children with autism and other disabilities.
So much is not being said….that the provincial gov’t in BC promised to fund valid autism treatments but didn’t – that parents go bankrupt trying to give their child what should be their right….that Geoff Plant and Gordon Campbell say they are currently funding autism treatment – if so, then why are we all going bankrupt, both financially and emotionally, constantly having to fight for our children’s rights?
The Supreme Court, the provincial governments and the attorneys general have all deprived these children of what should be their charter right – access to medical treatment for their core health need: autism.

I am no longer proud to be Canadian, and my daughter’s future is now more uncertain than ever.

With sincere thanks,

Jennifer Ralph

[Jenn Ralph]

me again…my husband just sent me this one too (also sent to all big newspapers):

From: Doug Ralph [mailto:Doug@terra-nova.ca]
Sent: Monday, November 22, 2004 12:21 PM
To: sunletters@png.canwest.com
Subject: Well Done Mr Plant

Mr. Plant:

You did a fine job. I guess congratulations are in order. The problem is I know your dirty little secret. I know how ABA therapy works and how it helps my daughter. I know the discrimination my daughter faces day in and day out. The fact that the Auton case had been skewed and morphed into a constitutional issue where the government could defend itself with technicalities and antiquated definitions is a credit to you and your lawyers. Perhaps the most ironic and skilful thing of all, and just the thing to stick it to us greedy parents already brought to our knees with crushing financial and emotional burdens is that the case in the Supreme Court became an issue of the rights of the government. Go figure. The right of government to spend their dollars the way they want. I thought it was supposed to be the rights of disabled children. Congratulations, Mr Plant. Well done. For you have not only won and protected the rights of the poor downtrodden government, you have muddied the issue sufficiently to deflect attention from the facts and to deflect attention from the plight of the children and the parents trying to care for them.

I applaud how you marginalize this neurological disorder by calling it a learning disability…sort of how you might call a cleft lip a skin condition. Yes, it is true, my daughter learns a little slowly. Not to mention her trouble with talking or playing with peers or recognizing her parents. Thanks to ABA therapy she is improving in all these areas. It is expensive as you have noted and I realize how these skills I have noted seem a little luxurious. Call me selfish. You did a splendid job in defending your government from us money grubbing parents of autistic children. Thank heavens the Court ruled in your favour and that we all were spared from having the floodgates opened with a rash of requests from all sorts of wanting kids with god-knows-what kind of crushing disability; the fact that they would want -let alone expect- that they be looked after does sound a little naïve in retrospect.

Doug Ralph

Richmond, BC

[Jenn Ralph]

THe following is the letter I sent to all the big newspapers today. The Ottawa Citizen called me back to say that my letter had been shortlisted for tomorrow's paper. FYI.

I was stunned, sickened and devastated when the SCC handed down their cowardly ruling on autism funding. They hid behind what seems to be a technicality – that autism is presently-and wrongly-not considered a core medical issue, and succumbed to the unchallenged fear- mongering about fiscal doom-and-gloom of the AG’s. To treat autism as only a learning disability (and not a core medical condition requiring treatment) is akin to saying a cleft lip is a skin problem. If the SCC actually read the previous rulings, which it appears they did not with all of the inaccuracies in their 22 page judgement, they would know that this was the last chance for autistic kids to get the medical treatment they need and rightly deserve as equal citizens in this country. They are the guardians of the Charter, and they failed one of the most vulnerable and disadvantaged groups in this country. Where is the accountability? The province now has free reign to continue with their shameful history of conflicts of interest, lies, broken promises, and systemically influencing education and social services with misinformation and insufficient funding for unproven, useless treatments. It is like “groundhog day”, once again, for parents of autistic children. These children have essentially been stomped on, muddied, and thrown aside. I hope they realize that this decision just ruined any future hopes at productive and happy lives for thousands of deserving, and able if treated, children with autism. I am truly now embarrassed to be Canadian.

Jennifer Ralph, Richmond, BC

[Jenn Ralph]

THe following is the letter I sent to all the big newspapers today. The Ottawa Citizen called me back to say that my letter had been shortlisted for tomorrow's paper. FYI.

I was stunned, sickened and devastated when the SCC handed down their cowardly ruling on autism funding. They hid behind what seems to be a technicality – that autism is presently-and wrongly-not considered a core medical issue, and succumbed to the unchallenged fear- mongering about fiscal doom-and-gloom of the AG’s. To treat autism as only a learning disability (and not a core medical condition requiring treatment) is akin to saying a cleft lip is a skin problem. If the SCC actually read the previous rulings, which it appears they did not with all of the inaccuracies in their 22 page judgement, they would know that this was the last chance for autistic kids to get the medical treatment they need and rightly deserve as equal citizens in this country. They are the guardians of the Charter, and they failed one of the most vulnerable and disadvantaged groups in this country. Where is the accountability? The province now has free reign to continue with their shameful history of conflicts of interest, lies, broken promises, and systemically influencing education and social services with misinformation and insufficient funding for unproven, useless treatments. It is like “groundhog day”, once again, for parents of autistic children. These children have essentially been stomped on, muddied, and thrown aside. I hope they realize that this decision just ruined any future hopes at productive and happy lives for thousands of deserving, and able if treated, children with autism. I am truly now embarrassed to be Canadian.

Jennifer Ralph, Richmond, BC

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