[Sabrina Freeman]

Hi All,

I was sent the following poem by a caring Canadian (with no connection to autism). I thought I'd share it with you.

Sabrina

Children in Crisis

There are children out there
Who need our support
Their issue has been
In the highest court
Our people must come together
We must be realistic
Reach out to Help children
Who are autistic
But the highest court
Just blew it all out
Leaving people with these children
Living in doubt
They basically say
That there really is no need
While the children suffer
And cannot be freed
There is treatment for these children
Which a family cannot afford
But still in the highest court
This fact is ignored
If we were to treat these children now
And not keep up all this strife
It would give these children
A chance at a quality life
But instead the system
Wants to make it a fight
So a safe future
Seems out of sight
These children are the minority
But they deserve our care
To give them any less
Is not really being fair
If we all stood up
Creating such a petition
The court could be forced
To give us recognition

By: Norm Warhurst

[Sabrina Freeman]

Dear Chat Board Members,

Below is a press release from an influential disability group regarding the Auton case. Enjoy!

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.

Contact:
Fiona Sampson, LEAF Counsel (416) 595-7170 ext. 223
Catherine Frazee, DAWN Equality Rights Committee (905) 304-8191

[Sabrina Freeman]

Hi everyone,

FYI, the Supreme Court of Canada announced today that it will be handing down its judgment in the Auton case on Friday, November 19th, 2004 at 6:45 am pacific standard time (9:45 am eastern).

Stay tuned!

Sabrina
(Miki's mom)

[Sabrina Freeman]

Dear FEATBC Chat Board members:

I would like to encourage you all to sign the electronic autism treatment petition that will be submitted to the Canadian Parliament. This will help an important lobbying effort in Ottawa.

http://www.petitiononline.com/mod_perl/signed.cgi?andap1

There are approximately 750 people on the Chat Board and even more if one includes family members. If every one of us signs the electronic petition, then Andrew Kavchak, our FEAT representative on Parliament Hill, will be able to deliver a petition with almost 2000 signatures. This is a very good opportunity to put autism treatment on the agenda of federal lawmakers.

I know that you are all very busy; however, this takes less than a minute and will spotlight the treatment rights of children with autism that currently are universally ignored by a purportedly "universal" health care system.

Please support Andrew Kavchak important petition effort in Ottawa!

Sabrina Freeman, Ph.D.
Executive Director
FEAT BC

[Sabrina Freeman]

A reply to Ursula's post on the ASBC list of service providers.
**************************************************

Thank you Ursula, for your insightful and probing comments regarding the ASBC list of purported autism treatment providers.

Here's plain-talking truth that only FEAT-BC can tell you, since we aren't reliant on a single penny of government funding.

The ASBC list is a roster that government forces the ASBC to publish on its web site. How can they do this? Simple. The ASBC annually receives over $350,000 of government dough to run its operation. The minute ASBC resists government's demands on ANY issue, which in this case would be publishing the deficient government "list" of so-called treatment service providers with necessary caveats and disclaimers and/or exclusion of service contractors who are Auton strike-outs, then ASBC would very much run the risk of severe MCFD reprisal i.e., turning off the decades-old spigot of social services money to the organization.

Although I know as fact that all the directors of ASBC are enormously dedicated, good people, and that they may very much want to do exactly what you suggest, Ursula, the problem with the ASBC is very much structural — it has always been far too close to government and that debilitating financial relationship remains unchanged.

I truly can't wait for the day that the ASBC is 100% self-sufficient and is at long last no longer financially dependent on the B.C. Government and its intransigent, court-defying bureaucrats, particularly Cameron Keller, junior autism bureaucrat on Broughton Street in Victoria and his boss, government’s autism wars captain from the very beginnings of the Auton struggle, Ms. Robin Syme, Assistant Deputy Minister of MCFD.

I truly can't wait for the day the ASBC finally declares its freedom from government’s yoke and becomes a genuinely independent and effective advocate for children afflicted with autism. I believe everyone, including the good people at the ASBC, shares in this vision and it will happen … all in good time.

Regards,
Sabrina (Miki's Mom)
Executive Director, FEAT BC

[Sabrina Freeman]

THIS POST IS IMPORTANT FOR ANYONE RECEIVING INDIVIDUALIZED AUTISM TREATMENT FUNDING

———————————————————————————–

Hello FEAT-BC!

It's truly amazing how the MCFD bureaucracy persistently keeps working to return to the same-old-same-old, dysfunctional pre-Auton status quo, even after no less than FIVE B.C. superior judges have already ruled against the B.C. government and mandated public funding for medically necessary autism treatment. It's becoming abundantly clear that the ONLY thing that will ever move government officials and finally convince this group of intransigent bureaucrats of the need to follow the Auton rulings, is this: a contempt of court finding (with significant penalties) against individual public servants in MCFD responsible for this long running defiance of the B.C Supreme Court's order. Based on the MCFD pattern of ignoring the court over the past four years, I have little doubt that individual bureaucrats in Victoria will likely need to be named and charged with contempt of court before this whole struggle for our children is finally over.

And onto the main point of my post:

Here's the heads-up on the latest strategy cooked up by your public servants in the social services ministry responsible for children afflicted with autism (MCFD). The "new & improved" restructured name for your kids' department is this (get ready, it's a mouthful): "Community Living Services Children With Special Needs and Early Childhood Development Service Transformation Division." The folks at MCFD always seem to be in a transformation or a restructuring, but somehow never arrive at any meaningful destination.

At any rate, central players in the latest scene of this tragedy play are Cameron Keller, 'Autism Initiatives' Director, and his boss – longtime autism policy czar in B.C. and Captain of government's anti-Auton efforts – Ms. Robin Syme. The new autism funding changes announced by Mr. Keller (https://featbc.org/downloads/Keller040902.pdf) have all the hallmarks of a gambit to eventually deny young children the autism treatment they require, as well as to get the noses of incompetent government-contracted autism services providers deeper into the public trough. DO NOT FALL INTO THIS TRAP!

Director Keller, in the all too common paternalistic, patronizing manner perfected by MCFD, is now working to convince parents of children with autism that it's in their best interest to have government divert individualized autism treatment funding directly into the accounts of government contractors, purportedly to spare parents the work and inconvenience of bookkeeping and so on (how demeaning can MCFD possibly get).

In the Orwellian double-speak of Mr. Keller's social services department, the new option is called the "Invoice Payment Option." Please understand this is the thin edge of the wedge – this is the first phase of taking away the individualized funding option we have fought so hard and so long to secure.

Here's the Keller-Syme playbook:
Step 1: Convince parents to allow government to give individualized funding directly to contractors.
Step 2: Get rid of the individualized funding option for parents and only fund service providers.
Step 3: Limit the number of service providers getting contracts.
Step 4: Limit the number of hours consultants and therapists are permitted to treat each child.
Step 5: All reputable service providers quit and we are left with the same service providers who were proven to be incompetent in B.C. Supreme court Auton case i.e., Gateway (and by association its education branch known as the Provincial Outreach Program for Autism and Related Disorders aka 'POPARD'), Laurel Group, CBI, and Giant Steps.
Step 6: There WILL most assuredly be more lawsuits ("and the beat goes on … and the beat goes on")

In other words folks, if the Keller-Syme plan plays out, we'll all be in "Ground Hog Day, the movie," a replay of the dysfunctional pre-Auton reality that will be served up over and over again by the excruciatingly incompetent MCFD gang on Broughton Street in Victoria.

If you care about your child and the next generation of children and want them to receive the only autism treatment science has to offer – Lovaas-type ABA — then please choose individualized funding over the Keller-Syme "Invoice Payment Option." If no one chooses the "invoice payment option," we will all be in a better position if and when government ever tries to to put individualized funding back in the bottle.

Regards,
Sabrina (Miki's Mom)
Executive Director, FEAT BC

P.S. A personal note to Cam Keller: Clearly you have been lobbied hard by government's incompetent special needs contractors to change the individualized autism funding program. They likely are not getting enough of the individualized funding pie … and there's a reason: they actually have to compete under individualized funding and no one wants their hopeless incompetence – the health and well being of our children is at stake! Instead of doing their bidding, tell them to retool and compete like everyone else. Please have the intestinal fortitude to actually do what is morally correct, instead of what is merely expedient.

Please remember Cam, kids struggling with autism are not children of a lesser god. They deserve fully funded government health care on the same terms as every other child in British Columbia.

[Sabrina Freeman]

Dear FEAT-BC Discussion Board members:

The FEAT-BC executive recently met with a U.S.-based researcher — Dr. Dana Lee Baker — who has received a grant from the Canadian Embassy in Washington, D.C., to study autism policy in Canada. This apparently flows from the Auton rulings. This same researcher is also the author of an article that was used by government in the Supreme Court of Canada against the families. We are talking about someone who is in the ‘Ivory Tower’ of academe — with all the expert power the position endows — yet does not understand that her ‘power of the pen’ was used by government officials in their battle to deny uniquely effective treatment for children with autism. In fact, she was quite surprised that her article was used against us in Ottawa.

Now, here’s an opportunity for members of this group to put things right. We explained to Dr. Dana Lee Baker what needs to happen and why. Specifically, our children must be in the health care system for their core health need, just like every other child – this is not a social services matter; consultants — and the therapists who work under them — must have a fee-for-service arrangement i.e., billing numbers, so that every child has publicly funded access to health care for their condition on the same terms as children who suffer from physical disorders.

Although Dr. Dana Lee Baker may understand that we do represent many parents of children with autism, she is looking for input from as many people as possible. I urge each and every one of you to let your voice heard. I believe this an honest researcher, which means she will not ‘fudge’ the data she’s collecting, even if it does go against any preconceived notions or the agenda of her funding source. I believe her research and the paper it spawns may be damaging to the difficult struggle we’ve undertaken if this researcher does not hear from the majority of us whose children are receiving Lovaas-type autism treatment.

Please spread the word to any parent of a child with autism who is in a science-based autism treatment program. Please keep in mind we’re trying to balance what has all the appearance of a government effort to collect data that is anti-ABA.

1) For parents and primary caregivers, here is the link to the survey:
http://www.zoomerang.com/survey.zgi?p=WEB2LPCE9WN3 fllink ends here

2) The link to the government Request for Proposal for this grant can be accessed at this link:
http://www.canadianembassy.org/education/grantguide-en.asp#research fllink ends here

Regards,

Sabrina Freeman, Ph.D.
Executive Director
FEAT of BC

[Sabrina Freeman]

It’s important to address the recent thread on the discussion board regarding a treatment service provider discussed in this forum – namely, Dr. Suzanne Jacobsen. Thus far, two posters have sung Dr. Jacobsen's praises, but unfortunately have missed the point of earlier posts on the topic.

I believe it's safe to say that no member of this discussion group would be so presumptuous as to declare that Dr. Jacobson is not a competent psychologist. In fact, our assumption is that there are many fine psychologists such as Dr. Jacobson in private practice throughout B.C. However, the question posed to this group — as I understand it — is this: does Dr. Jacobson qualify as a specialist in the autism treatment protocol developed and refined by Lovaas and colleagues — a treatment method replicated numerous times in peer-reviewed research and deemed medically necessary by no less than five judges in British Columbia Superior courts. The point made by parents at the outset of the thread on this board is that, in their opinion, Dr. Jacobson does not appear to be qualified in the highly specialized area of Lovaas Autism Treatment.

If parents elect to not use the proven Lovaas-UCLA protocol, but instead use other forms of ABA, such as Verbal Behavior (Sundberg & Partington — promoted by Carbone), or Pivotal Response training or Fluency/Precision teaching, etc, that is certainly their prerogative; however, parents hopefully will make an informed choice with full knowledge that these different forms of ABA therapy do not have the rigorous scientific data necessary to support them, as does the Lovaas method of autism treatment — the science that won the day in BC Supreme Court and upheld on appeal.

In view of all this, it's important to stress that it is not appropriate on this board to discuss the qualifications and expertise of a service provider who may be doing a "great job" in an unsubstantiated or experimental type of ABA therapy. When parents report in this space on these treatment methods, everyone needs to keep in mind that the information is purely anecdotal or, to be precise, not yet supported with longitudinal, between-subject research designs to support the treatment efficacy.

Please remember that your child's future entirely depends on you being a savvy consumer of autism treatment services. Sadly, there are far too many service providers sprouting up in the autism business working very hard … to take your dough.

Sabrina
(Miki's Mom)

[Sabrina Freeman]

To FEATBC Chat Board members:

Over the past several months, there has been some confusion regarding rules governing use of the FEAT BC discussion forum. To address the ambiguities we’ve updated forum rules to be more explicit.

Many members of this forum may not have had the opportunity to review the forum rules so I have copied them below for convenience. I ask new members of the forum, and those unfamiliar with the Chat Board rules, to please take a moment to review the important guidelines.

Thank you.

Sabrina Freeman, Ph.D., Executive Director
FEAT of BC

__________________________________________________________
To be a member in good standing, please respect the following:

1) Be courteous to each other. We ask you to refrain from abusive language, insults and profanity (swearing).

2) Personal attacks are not permissible in the FEAT BC Discussion Group. We respect all opinions even if we disagree with them.

3) Professionals such as lawyers, autism consultants, advocates, speech pathologists, occupational therapists, psychologists, physiotherapists etc., are not allowed to advertise directly or indirectly using their professional designation or business contact information on this website. Existing autism therapists advising of their capacity to add families or those seeking employment as therapists i.e., paraprofessionals, are the only exceptions to this rule. The Board Administrator of the FEAT of BC discussion forum will make the final determination.

4) Organizations or companies sponsoring or operating autism conferences or workshops that are not sponsored by FEAT of BC, are not permitted to advertise — directly or indirectly — on the discussion board without prior written permission. If the conference organizers believe that the conference would benefit FEAT of BC Discussion Boards users, we ask that they please contact FEAT of BC to request permission to advertise on the board.

5) This is NOT a confidential discussion forum. Responsibility for posts to the FEAT BC Discussion Group lies entirely with the author who posted the original message.

6) The FEAT BC Discussion Group has been designed to discuss any topic relevant to home-based Lovaas-style A.B.A. programs (including Government funding and school issues). When we use the term Lovaas-A.B.A., we mean discrete-trial-based interventions (also referred to as Lovaas-type "applied behaviour analysis" or "Lovaas" behavioural treatment) for autism and related disorders. This is not an appropriate forum to discuss the latest, unscientific "cure of the day". If you would like to discuss alternative "options", please go to the THE AUTISM MAIL LIST.

The autism mail list is an open e-mail-based forum to discuss autism hosted by St. Johns University, and administered by Bob Zenhausern and Ray Kopp. It includes parents, autistic people, researchers, professionals, students, and other people interested in autism. Discussion is lively: many weeks see 500 or more postings. It is a very good forum for posing a question for which you do not know who would have the answer. To subscribe, send an email to: listserv@MAELSTROM.STJOHNS.EDU. Leave the subject line blank and in the body type SUBSCRIBE AUTISM [firstname lastname].

Important points to remember:

1) Although User ID is required to post messages to the FEAT BC Discussion Group, posted messages can be read BY ANYONE with access to the world wide web (this a web-based Discussion Forum). To help protect yourself from personal liability, it is important to remember the following: if you are criticizing a school, organization or group of any kind, please make sure to state that: ìThis is the experience I had with [the school, institution, organization]î, rather than general, global statements about the organization.

2) If you would like to help a parent out, but need to keep the information confidential, we suggest you e-mail that parent privately. If the person included an email address with their message, you can simply click on their email address and send them a private message. If they posted anonymously, post a request to the forum asking for the personís e-mail address.

We very much welcome your feedback and suggestions and look forward to you sharing your opinions and experience with the group.
__________________________________________________________

[Sabrina Freeman]

Hello everyone,

Well … the Chat Board certainly has been active lately, including some shots directed right at me. It reminds me of the first time a lawyer for the Attorney General used my name during the Auton case in such a way that it virtually sounded like a swearword! Although I was surprised my name would evoke such passion in a lawyer, there WAS pride in knowing we are effective in what we do for children with autism and are not being ignored. I'm not surprised there is vitriol and animosity in this thread since the topic of autism treatment is a very emotional subject.

Once again, as in my previous clarification post, I would like to address the ideas in the flurry of posts made to the board lately, rather than attack those engaged in throwing the Molotov cocktails.

1. Generic ABA, vs. Lovaas

Unlike the broad discipline of ABA, which uses primarily single-subject case designs, Lovaas took many of the findings from the field of ABA and designed a ‘between-subject ‘design, which employed one experimental and two control groups – this was groundbreaking then and has yet to be matched. In addition, he attempted to use a respectable number of children per condition to test his autism treatment hypotheses. It is Lovaas and colleagues that adhere to the higher standard of experimental design in order to see whether the protocol ameliorates the symptoms of autism. The results of Lovaas' study and subsequent studies done by other researchers utilizing Lovaas' protocol indicate that children in the ‘experimental’ group progressed significantly more than those in the ‘control’ groups. The children's progress was not from ABA focal treatments, which is common in ABA research, but rather from a particular protocol (the Lovaas brand) that utilizes a unique collection of ABA focal treatments to remarkable effect in the amelioration of autism.

Other researchers doing ABA have yet to design a ‘between-subject’ study testing their autism treatment protocol. That kind of research I would truly welcome. This is the way we see progress in science. but it’s expensive, difficult research to do. In the meantime, new parents need to make informed choices about which protocol to use, after understanding the science behind each autism treatment protocol. This is why we speak frequently about the ‘Lovaas’ treatment protocol.

Many people use the convenient shorthand term of "Lovaas method", "Lovaas-type ABA", "Lovaas Autism Treatment" or "Lovaas ABA-DTT.” What they are all referring to is the behavioral treatment method pioneered by Lovaas and colleagues that came out of the Young Autism Project labs at UCLA — tested and published in 1987. We are certainly not going to apologize for the fact that parents in this discussion forum have elected to use the autism treatment method underlying Lovaas’ remarkable 1987 research results and the numerous subsequent replications.

To muddy the waters by not differentiating between treatment protocols would be dishonest to new parents. Part of FEAT BC's organizational culture is to not hold back from the truth even if it may be unpleasant to some. In short, the role of FEAT BC Executive Director (an entirely 100% volunteer position) is not a popularity contest. It is to steward an organization along a mission that is not diluted by fuzzy thinking. New parents have a tough enough time figuring out what to do without adding confusion to what is so very, very clear. The behavioral treatment method pioneered by Lovaas and colleagues still has the most science supporting it, despite the passing of sixteen years since the landmark 1987 study.

2. FEATBC vs. other FEAT's in North America

I cannot speak for other FEATs in North America who may have diluted their message due to a lack of understanding of science, or due to a lack of understanding regarding the disservice they do for new parents when they "bend" a little on the science; however, I know that there are many FEAT organizations that DO share our commitment to science. FEAT organizations are all completely independent and therefore, create different organizational cultures. There is an important point to keep in mind: parents involved in FEAT BC are the only group of parents that have successfully pursued landmark lawsuits — B.C. Supreme Court, the B.C. Court of Appeal and soon the Supreme Court of Canada in March 2004. Part of the reason that this group of families has been so successful is that they have focused in like a laser beam on the science of autism treatment, understanding that only the treatment with substantial scientific evidence will win the day in a public health care system.

3. The Purported Oversized Ego of the Executive Director

I find this accusation somewhat amusing, but I will address this point seriously.

I've yet to understand how there is purported status and power conferred upon a position that is 100 percent volunteer. In terms of power, if the role of Executive Director came along with any meaningful power, then we wouldn't have to sue government. Senior bureaucrats in Victoria would simply Helli-Jet over to ‘do lunch’ with FEAT and get on with the business at hand – but their dialing finger has been broken since 1996, ergo the courts as last resort. So, I can't say that there is any power that goes along with an essentially thankless job that takes time away from family and SIGNIFICANT professional opportunity cost attached. However, it is a job that I embrace with enthusiasm because it’s important and the right thing to do; we’re changing the landscape in Canada for generations of children with autism. This is a moral imperative. No ego, no power, no bucks. Just something called justice.

4. Credentials after one's name

Nancy Walton did a wonderfully succinct job of addressing this issue; therefore, I would ask anyone interested to review her eloquent post. Post on the topic of letters after one’s name.

5. What are Sabrina Freeman's credentials anyway, and what does the Ph.D. stand for?

I generally do not speak about my academic background and myself because it is unseemly and frankly irrelevant. However, since my background has been introduced in the forum debate, I will elaborate.

I have a Ph.D. (Doctor of Philosophy) in Sociology from Stanford University. My areas of specialization are "Social Psychology/Small Groups Research" and "Organizations" from the field of Sociology. Sociological Social Psychologists create theories and theoretical research programs and then go about testing these theories and research programs to move the field forward. Their research is tested using the experimental method since only through experiments can causal relationships be determined.

In the course of my work I've designed experiments for new research in the university lab as well as taught classes on the experimental method to Sociology majors. I won't bore everyone with more details; however, what I bring "to the party" at FEAT BC is a thorough grounding in science and experimental design – meaningful in the expert versus expert slugfest of court. This is why I am so careful to not "bend" the science for autism treatment. Unfortunately, the field of autism research is replete with those who do bad science, or prematurely introduce a treatment into the field before it has been rigorously tested. That’s the surest way to lose these autism wars, which is not what this noble enterprise is about.

I've always adhered to the precept that bad data is worse than no data since it carries with it the danger of people making very harmful decisions based on lousy input. When it comes to disabled children, this is especially dangerous.

To sum up, I have always believed that parents need to make informed choices. Clearly the debate swirling around the science of autism treatment needs to be better addressed. To this end, I will be offering a lecture to parents — free of charge — on the scientific method and how it relates to autism treatment so parents can protect themselves and their children. It’s important that everyone become an informed consumer to make the right decisions for their child. This lecture will not be about one treatment vs. another. It will be about experimental design in general and how this relates to your child. The lecture will be ready in about two 2 months — I will update the group when the lecture date and room are confirmed.

Sincerely,

Sabrina Freeman, Ph.D.,
Executive Director
FEAT BC

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