[Ursula Lee]

PLease send a note to Quirks and Quarks on CBC Radio One. Bob MacDonald (host) did an absolutely appalling piece on "rethinking autism" (Sat Oct 7)essentially along the lines of "Autism is a normal variant of human behavior just like homosexuality" (ergo no treament is warranted) and gave Michele Dawson some prime press time. Please write in and ask him to interview some real experts like Richard Foxx and some of the parents dealing with this "normal variant" on a day to day basis.

[Ursula Lee]

Bill 33 has passed 3rd reading as of May 11, 2006. This Bill allows schools to limit the number of special needs kids with IEPs in a class to 3. There does not appear to be a method to choose which 3 special needs kids stay and which go (where to, the Bill also does not say). The BCTF regards this as a great victory for their working conditions. The govt has acquiesed to appease a union that has negotiated away (with government's consent) our childrens' full rights to equal education. This is a blatant exhibition of the complete disregard and disrespect of the value of our children in the eyes of teachers and government.
FOLKS!!! you need to get on your MLA's case and you need to let the teachers in your schools know that you understand they have just beaten the (virtual) crap out of our kids …yet again. And you WILL NOT stand for it!

[Ursula Lee]

Wow! Thanks for sharing this Justin. I'd like to point out that while the movie focused on the mums(and not inappropriately so), let's not forget the Dads are right in there too…. you go FEAT Dads!

[Ursula Lee]

Re: MP James Lunney

I am very concerned that the issue of autism is being lumped in with chiropractic and stool test for pancreatic enzymes and natural products. I would rather autism not be brought up at all than to have it spoken of in the same breath as these other issues which are controversial, alternative or paramedical. Autism treatment is none of these and I think it could harm autism advocacy if people begin to think of it in the same category as "alternative" or "complementary" health care. I hate to discourage any exposure we can get for autism, but I think in this case it could backfire.

[Ursula Lee]

I also sent this longer version, which at 1000 words, I doubt will be published, but syas things much better.

Editor,
It was with great sadness that I learned of the Supreme Court of Canada's decision to deny autistic children funding for potentially life saving treatment. While autism is not in itself a life-threatening condition, it is certainly a threat to the quality of life of a child and a profound barrier to the development of a child's full potential for engagement in and contribution to society as we know it. Notwithstanding the exorbitant cost of evidence-based treatment, it is incumbent on us, as members of a humane society, to consider the plight of the most vulnerable among us, and ask if we can do better.

The reason given for denial of funding is that treatment for autism was not deemed to be "medically necessary", which, in my opinion, is open to interpretation. Let me draw an analogy. It has, not infrequently, been suggested that if one were to replace the word "autism" with "cancer" in any given context, that the gravity of the situation may be made clearer. Cancer, after all, is an entity that most people understand and that many have been touched by. Autism, on the other hand, is an "invisible disability" , the pathology of which has not been entirely elucidated. These children are beautiful, they look so "normal", how could they be disabled? However, cancer is indeed an apt analogy. Cancer is a disease characterized by abnormal and disordered growth of cells that cease to respond to normal mechanisms of regulation in the body, as a result of genetic mutations. Autism is a neurologically based disorder that is associated with abnormal and disordered growth of brain cells. There is a strong genetic correlation in that the concordance rate for identical twins is about 90% and some genetic mutations (eg. Fragile X syndrome) have been associated with autism. Research in autism has shown that outcomes are best when interventions begin at earlier ages compared with older aged children. Cancer is curable if detected at an early stage. In some cases, cancer that has apparently been eradicated recurs, sometimes with a recurrence rate as high as 50% – 70%. This is not a deterrent to administering treatment to patients who wish to receive it. Cancer that is not eradicated will advance and ultimately (in most cases) cause death. Similarly, in the case of autism, evidence in the literature suggests that early and intensive intervention results in optimal outcomes. Autism that is not effectively treated will result in a lifelong disability which in many cases prevents the individual from participating fully in society. There is treatment available which could result in "cure" rate as high as 47%. By "cure" I am referring to the ability of the affected individual to participate in society to the full extent of his or her potential. In the case of cancer, a recurrence rate of 50% is not a deterrent to providing treatment. In many cases, the evidence for cancer (and other medical) treatment is based on best-available evidence, not necessarily "gold standard", when this is not available. There may be many reasons for why theoretical gold standards (double-blind, placebo-controlled, randomized, clinical trials) are not available. In some cases, because of currently available information or evidence, a "no treatment" arm is not acceptable to patients. Or the number of patients required to conduct the study is so high that it could not be achieved in a timely fashion. Or the costs of conducting the study is prohibitive. Many clinical trials could not be done without the funding provided by pharmaceutical companies hoping to cash in on their drug of interest. In the case of autism, all these reasons apply when it comes to answering why there is "no evidence" or lack of evidence to support certain treatment options. Indeed, many cancer treatments are based on "best available evidence", and this is acceptable to practitioners, patients and society. In the case of autism, the New York State Department of Health did just that – they reviewed the available evidence and recommended treatment based on the available evidence. Yet this seems to be insufficient for the gatekeepers that decided who does or doesn't receive funded treatment.

It is a fact that the bulk of health care dollars is spent on patients with chronic, incurable conditions such as diabetes, heart disease and cancer, and /or on patients in the last stages of their lives. Most cancer drug treatments are not curative. Yet the bulk of cancer treatment costs are in administering expensive drugs that run in the millions of dollars that are intended to improve quality of life (without necessarily increasing quantity of life) or provide potential prolongation of life by months (at best), in most cases. As a humane society, we have decided that this is an acceptable cost to bear. Contrast this with autism. This is also a lifelong condition. Effective treatment is available (based on best current evidence). But it is not glamorous. It doesn't have the backing of large pharmaceutical companies that could profit from a new drug. There is precious little funding for research. There are no powerful lobby groups that could be hired to sway government representatives. Treatment, like most medical conditions (and not just cancer) does not result in a guarantee of "cure". But diabetes, or heart, or cancer patients are not denied medical treatment because cure is not guaranteed. (In the case of some cancers, treatment is recommended based on anticipated improvement in survival of 3% (yes, three percent)). Nor are they denied treatment because "gold standard" research results are not available. They receive treatment based on best available evidence. Why then, are autistic children denied treatment that could result in improvement for a significant proportion of children? We are willing to spend millions of dollars on end-of life care. Yet, these children, at the beginning of their lives, are denied a chance at expressing the full potential of their abilities. What, as a society, does that say about the value and worth we place on these little lives, with their whole life ahead of them?

Ursula Lee

Disclosure:
Ursula Lee is a physician who is also the mother of an autistic child.

[Ursula Lee]

here is the text of a letter I sent to Globe and Mail, Vanc sun and Province. Hope one will publish.

Editor,
Re: Supreme court decision (Nov19/04) on not funding autism treatments.

It has been suggested that if one were to replace the word "autism" with "cancer, that the gravity of the situation may be made clearer. Cancer, after all, is an entity that most people have been touched by. Autism, on the other hand, is an "invisible disability". These children are beautiful, they look so "normal", not "sick". Yet, cancer is an apt analogy. Cancer is a disease of abnormal cell growth resulting from genetic mutations. Autism is a disorder of abnormal growth of brain cells with a strong genetic correlation: the concordance rate for identical twins is about 90% and some genetic mutations (eg. Fragile X syndrome) have been associated with autism. Outcomes for cancer are best when treated at an early stage. Research in autism has shown that the best outcomes are attained when interventions begin at earlier ages compared with older aged children. Cancer that is not eradicated will advance and (in most cases) cause death. Autism that is not effectively treated will result in lifelong disability which in many cases prevents affected individuals from participating in and fully engaging with society.
The bulk of health care dollars spent on direct patient care, is expended on patients with chronic, incurable conditions such as diabetes, heart disease and cancer, and /or on patients in the last stages of their lives. As a humane society, we have decided that this is an acceptable cost. Contrast this with autism, where known effective treatment that could benefit a significant proportion of children is denied. We are willing to spend millions of dollars on end-of life care. Yet, these children, at the beginning of their lives, are denied a chance at expressing the full potential of their abilities. What, as a society, does that say about the value and worth we place on these little lives, with their whole life ahead of them?

Ursula Lee

Disclosure:
Ursula Lee is a physician who is also the mother of an autistic child.

[Ursula Lee]

I was somewhat alarmed after a conversation with my social worker and I was wondering if anyone knows any more than I do. My soc worker informed me that the govt has implemented a new policy as of Oct 1st that has an alternative payment method called Invoice payment. The service provider invoices the govt directly and I am not involved. Hence no $1667 a month (I won't need it!). Although I would be responsible for any expenses over $1667. I was told that since my agreement predates this, that I would have the choice of Invoice payment or direct funding, but when this agreement expires next year, I will go to invoice payment. Does this mean that line therapists will have to invoice the govt? Is there a way of preventing the govt from enforcing this measure? I will be seeing my soc worker in the next month and hopefully will have it clarified, but as of now, she is not clear herself what the detials are.
Thanks for any clarification on the matter.
Ursula

[Ursula Lee]

I am still not clear on how service providers get to be on the ASBC website. The self referral form states that a public list of qualified service providers is compiled by the ASBC. It also instructs the referee to send the completed form to ASBC. What happens next? I just want to understand the process of getting a service provider on the list that is compiled by ASBC and appears on its website. I think this is important information for people who are looking to the ASBC, as I did, for support and information in trying to do the best for their children.

Another point that I find disturbing is that the ASBC should be aware from the Auton case, that certain service providers (egs. Gateway, CBI, LEAP, Laurel) are not, in fact, qualified to treat autistic children, and were discredited in court. Therefore, it seems unethical for anyone to knowingly include these providers on a list of qualified service providerswhen they are clearly not qualified. Providing a disclaimer, in my opinion, does not make an unethical act less unethical. The MCFD may have been cognizant of this, and appear to have successfully circumvented this sticky issue by paying someone else to do it (if the MCFD is indeed the gatekeeper of "the list").

The ASBC does a lot of good work and I have benefited from this myself and am grateful that they were there for me. However in this matter, I feel that the right thing to do would be to remove these nonproviders and others like them, who are potentially harmful to the children who need the most help, from the ASBC website. If the MCFD wants, it can post its own list.

[Ursula Lee]

I am new to this and not as much in the know as others. My social worker led me to believe that the list of qualified providers is vetted by the ASBC which has been contracted to do so, thus relieving the Ministry of that responsibility. I was told that providers who wish to be listed must submit an application to the ASBC. This came up because the consultant I wanted to work with was not on the ASBC approved providers list, and I was urged by my social worker to contact the ASBC to make sure that my consultant was approved. This made sense to me as the ASBC would likely be better qualified to scrutinize potential providers. It does not make sense for the Govt to pay someone else to simply post a list of providers when they can do that on their own website for free. However, if what I have been told is untrue, then perhaps it should be declared on the ASBC website as parents of newly diagnosed children are being told this story. If, on the other hand, there is truth to this, then I see a conflict of interest. In any event, paid or not, isn't the ASBC doing parents a disservice by lending these discredited providers credibility by allowing them to appear on the ASBC website (included in the list of qualified providers) whether or not the ASBC has any role in the approval of these providers?

It would definitely be helpful, Laurie, for the ASBC to be transparent about the way the list of providers ends up on the ASBC website. This would go a long way in helping parents get informed, especially if, as you say, the ASBC does not necessarily "approve" the providers that end up on their website.

[Ursula Lee]

I feel fortunate that I am on the "right track" with my son( who is about to begin his home based ABA therapy next week) with the help of some other seasoned warriors. I don't know how other parents can become better informed – the Autism Soc of BC website lists "qualified" providers which have been approved by them, and these include CBI, Gateway, LEAP and Laurel. I feel sorry for parents who are trying to do the best for their child and are misled by this list.
Ursula

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