[Sabrina Freeman]

*** ATTENTION ALL PARENTS WITH KIDS UNDER 6 ***

To all FEAT BC parents in the Lower Mainland with children under age 6, I have important information for you.

Please e-mail me your phone number to skfreeman@featbc.org so I can contact you.

Thank you!

Sabrina
FEAT BC

[Sabrina Freeman]

Hi All!

I have more information regarding the Wednesday, July 18th presentation to be held at St. Frances-in-the-wood.

The presenter is Andrea Sharpe, consultant with Autism Partnership working with Dr. John McEachin. She is relocating to the Greater Vancouver area and is very happy to take on older children. Ms. Sharpe's presentation will discuss the research and practical information regarding working with older children.

A little information from Ms. Sharpe on her presentation:

*A widely held myth states that older children with autism do not benefit from applied behavior analysis (ABA). However research and treatment outcomes clearly show that ABA is beneficial to children of all ages. The similarities and differences between the programs set up for older children and adolescents will be discussed. Some examples of programs that Autism Partnership has set up for older clients will also be presented.*

All parents, professionals and para-professionals are welcome to attend. In particular, I strongly recommend that any parent considering starting an ABA program with an older child attend this presentation. Ms. Sharpe will be able to answer your questions in person and you will be much better able to make informed decisions.

In terms of credentials, we have been given the following information: Ms. Sharpe has a B.A. in Psychology from UBC and an MS. in Health Psychology from the University of Southampton, England; she started as a junior therapist in 1994 and has since worked at the P.E.A.Ch. Young Autism Project in England as a Trainee Senior Supervisor (1998-1992) and at Autism Partnership in California as a Intern and Program Supervisor (2000 – present).

I hope to see you there!

Sabrina
(Miki's mom)

[Sabrina Freeman]

Hello everyone!

Please mark off the following events on the calendar:

Andrea Sharpe, of Autism Partnership, will give a presentation on older children and intensive, behavioural programs — Wednesday, July 18th, 7:30 PM at St. Francis-in-the-wood; I will be posting more information soon.

Bodhanna Popovich — and others from Project WEAP — will give a one-day workshop on October 6th. Time and Place, TBA.

Sabrina

[Sabrina Freeman]

Hi all!

I’ve recently found out more about the lecture we are hearing at the FEAT meeting this Wednesday at 7:30 PM at St. Francis-in-the-wood.

Before I give you the info., I’d just like to say that it will be rare for us to bring in someone this well-known and significant in the research world in autism, so here’s your chance to be plugged in to the state of the science in autism research. Dr. Holden will be at the medical genetics department at Women’s and Children’s Hospital prior to our evening lecture, so any physician FEAT parents out there may want to meet up with Dr. Holden there.

Anyway, here’s a synopsis of the research project Dr. Holden will be discussing:

Unraveling the Mystery of Autism: From Genetics to Prospective Identification and Prevention

Jeanette J.A. Holden, PhD, FCCMG (Principal investigator)
autism@post.queensu.ca
http://www.autismresearch.ca
July 2001

Autism spectrum disorders (ASDs) are characterized by impairments in reciprocal social interaction and communication, and stereotypic activities, and affect at 1/250-1/500 children. A group of more than 60 researchers, clinicians, and parents from Canada and the US have formed the Autism Spectrum Disorders Research Team (ASD-RT), an interdisciplinary group of investigators with a broad range of expertise & a mandate to undertake research that will result in a better understanding of the etiology, pathogenesis, and effects of treatment of persons with ASD. The ultimate aims of our research program are to develop methods for very early identification of children at risk, and intervene by appropriate means to prevent overt symptoms of autism. To achieve these goals, we are undertaking the following projects: 1) An Epidemiology study, in which families with individuals with ASD are invited to participate in a Research Registry, with participants being invited to take part in an array of surveys, questionnaires, and genetic studies; 2) A Genetics study, involving families with two or more affected individuals, aimed at identifying genetic factors, as well as phenotypic differences (classical clinical features, neuroimaging, early developmental features) and behavioural characteristics (from retrospective videotape analyses and current behavioural assessments) which, when combined, will lead to an understanding of the biological basis for ASDs; and 3) a Prospective Study, aimed at identifying very early signs of ASD (i.e. by 6 months of age) and effective means of treatment. The combined results of the projects should lead to a better understanding of ASD, both etiologically and neurodevelopmentally.

[Sabrina Freeman]

Hi Everyone. Great news!

We are VERY lucky to have Dr. Jeanette Holden — Director of the Cytogenetics and DNA Research Laboratory at Queen's University — give a talk to FEAT BC members on Wednesday, July 4th.

Dr. Holden is the lead researcher of a Canada-wide research project on autism. Her lab has been given a substantial amount of research funds from the Federal government to do research on the cause of autism, among other things. I will update you as I learn more about the project.

I know everyone is very busy with the beginning of summer, etc., but this is likely one of the most worthwhile talks you will hear this year.

Dr. Holden will be presenting her talk free of charge to FEAT BC members.

Date: July 4th, 2001
Time: 7:30 PM
Place: St. Francis-in-the-wood (map available on the FEAT website: http://www.featbc.org and go to the parent group meeting page).

[Sabrina Freeman]

Hello everyone,

Interesting byline came across the desk recently: *Blue Cross Settles
Suit*. Autism treatment will now apparently be covered by health
insurance in the State of Minnesota.

Minnesota Attorney General, Mike Hatch, filed suit against two health
insurance companies for failure to cover mental health claims …
including the cost of autism treatment. One of the two health insurance
companies — Blue Cross — has settled out of court and is reimbursing
the state government in the amount of $8,200,000 for a portion of
rejected mental health care claims (complete text of article is at the
end of this post).

Contrasting sharply with Minnesota, is British Columbia. Unlike that
U.S. state, BC’s health insurance *company* is government owned and
purportedly provides publicly funded, *universal* and *comprehensive*
health insurance coverage. Consequently, in BC there is a clear — and
harmful — conflict of interest in health: Government IS the health
insurance *company*. Regrettably, there is no independent entity to
safeguard against abusive and harmful health insurance practices in our
province. The ironic consequence is that in BC — unlike Minnesota —
it is PARENTS who have been forced to sue the government's Attorney
General (and others) for reimbursement of, *rejected claims* for autism
mental health care treatment i.e. Lovaas-type ABA.

PROBLEM: In effect, our Attorney General, chief law enforcement
official, is *in bed* with the health insurance *company* — the BC
Government ('fox guarding the chicken coop' comes to mind).

Widely accepted (but apparently not by former Children's Ministry
bureaucrats) is that autism is a *health* issue, and as such, its
treatment must be funded by provincial health insurance. The
Government of Minnesota and 'Blue Cross' (a private U.S. health
insurance company) have arrived at an historic agreement to provide
coverage for autism treatment, among other mental health treatments. It
is time for the new Government of British Columbia to show courage and
do the same: work with the Medical Services Commission — our health
insurance *company* — to provide BC children the mental health coverage
private U.S. insurance companies provide for children with autism in
that country.

Individualized *bloc funding* was also recommended by BC Supreme Court
as a way to fund autism treatment. Regardless of the precise funding
mechanism, the Liberal government must adopt a *health care model* for
autism treatment, as recommended by BC Supreme Court — move our
children out of the child protection ministry! The current social
services approach to autism is an abysmal failure.

Significantly, the BC Government continues to violate the constitutional
rights of our children, even though almost a year has passed since the
court handed down its landmark decision on autism treatment. BC has yet
to comply with the July 2000 BC Supreme Court Auton ruling.

The Children Ministry's ‘EIBI’ pilot program is now recognized for what
it is — a fraudulent NDP sham (truth is a very stubborn thing).
Children’s Ministry service providers and bureaucrats will not be
permitted to sabotage a BC Supreme Court ruling. Now is the time to write your MLA and
other key government officials. Let them know what you think about the
unholy alliance of former Children's Ministry civil servants +
contracted $ervice provider$ and anti-Lovaas BC university academics.
Let them know what you think about misguided and incompetent MCF
policies. This new government has an historic mandate; they need to
hear from ALL of you about what you expect them to do … this is the time!

Sabrina (Miki*s mom)

_____________ Article _____________

Blue Cross Settles Suit

[By Christopher Sprung.]
http://www.zwire.com/site/news.cfm?newsid=1971407&BRD=2163&PAG=461&dept_id=438479&rfi=6
<– address ends here.

St. Paul – In a move that may have implications throughout the health
insurance industry, Blue Cross and Blue Shield of Minnesota on Tuesday
announced it has settled a lawsuit brought by the state alleging that
the
health plan routinely refused to pay for mental health care treatment
for children.
While the settlement, which includes an unprecedented new claims
review system, formally acknowledged no wrongdoing on the part of Blue
Cross, it did come with some public words of contrition.
"We*ve failed these families in some important ways," said company vice
president Richard Neuner.
The agreement will result in better coverage for such things as
eating disorders, chemical dependency and autism and will improve access
to
treatment, Neuner said. Last October, Attorney General Mike Hatch filed
suit in Hennepin County District Court alleging that Blue Cross had
violated state consumer
protection and insurance laws by refusing to pay for mental health
treatments and rejecting claims for court-ordered treatment costs which
were then borne by the state.
Under the terms of the agreement, Blue Cross will pay the state
$8.2 million to make up for a portion of those costs for denied claims.
And in an unprecedented move, Blue Cross has agreed to create a
new fast-track review committee to independently evaluate claims for
mental health, chemical dependency, autism and eating disorder benefits
that are
initially rejected.
The three-person committee will have one representative appointed
by the Attorney General, one by Hennepin County Chief Judge Kevin Burke,
and one appointed by Blue Cross.
Under the agreement, Blue Cross must process urgent claims as
soon as possible, but in no event more than 24 hours. Non-urgent claims
must be handled within two business days.
If the health plan denies a claim or does not follow deadlines,
the claim will be referred to the committee for review within 24 hours.
If a denial for chemical dependency or eating disorder treatment
is made because of a lack of medical necessity, Blue Cross will forward
the denial to the committee within six hours.
Within one business day, the committee may vote to overturn or
uphold a claim upon the vote of any two members. The committee*s
decision will be binding upon Blue Cross, but not the patient.
Other key elements of the settlement include:
* Improved coverage for mental health, eating disorders and
chemical dependency.
* Semi-annual audits of Blue Cross records and personnel to
assess the processing of mental health benefits. The audits would be
conducted by a
state-appointed auditor.
* Court-ordered treatment would be covered as medically necessary
as long as it is based on an evaluation and recommendation of a
physician,
licensed psychologist or other specified health professional.
Hatch called the settlement "very significant" and said he hopes
the state*s remaining HMOs and health plans will demonstrate "the same
type of leadership and compassion" and voluntarily follow the lead of
Blue Cross.
"If they don*t I suspect we*ll be back having the same
conference,"Hatch said, issuing a thinly veiled threat that other
carriers could find
themselves the subjects of similar lawsuits. ©Worthington Daily Globe
2001

_____________ End _____________

[Sabrina Freeman]

CTV National News should be running a story about a mom in Nova Scotia who has launched a law suit against the provincial government to secure funding for Lovaas … should be interesting.

Anyone interested in reading her ‘statement of claim’ can get it at http://www.accesswave.ca/~dassonvillelaw/
Sabrina

[Sabrina Freeman]

In a message dated 5/18/01 9:24:40 AM:

>————————————————————
>FeatBC Discussion Board: Room One: General Topics Discussion
>————————————————————

>By Anonymous on Friday, May 18, 2001 – 09:23 am:
>
>… there was a book published a couple years ago, which
>outlined the research on all the major Autism treatments. I
>am wondering what the title of this book was, and where I
>could get a copy.

The book that evaluated all the major treatments for autism is the New York Department of Health Report: Clinical Technical Guidelines for the Treatment of Autism.

The book can be purchased locally through ‘Kids Tools, Inc.’, 604-722-8543, or directly from New York at 518-439-7286

> Over the last couple years FEAT has sponsored an ABA
>training workshop held by the CEE. I was just wondering
>whether there was going to be a similar workshop this year,
>and if so, who was going to be presenting.

If anyone is interested in organizing a workshop, please give FEAT BC a call, 534-6956.

Sabrina

[Sabrina Freeman]

RE: Rob Vanspronsen post of May 13, 2001: Direct link at http://www.featbc.org/chat/messages/4/4.html?SundayMay1320010538pm#POST54
___________________________________________________________

I want to thank Rob Vanspronsen for his post in the General Topics room regarding Giant Steps and would like to take this opportunity to reply.

First, I have to reaffirm that the FEAT BC discussion board is designed to share information relating to Lovaas-type ABA, and issues surrounding this topic; it is not a general autism board and is not maintained and supported to debate other therapies and service providers who do not provide intensive behavioural interventions — there are many other Internet venues for that. However, given that the Giant Steps issue has been raised in relation to an interview on CKNW’s Bill Good program regarding government's critically flawed, so-called ‘EIBI’ program, I am compelled to address the many important issues raised in Rob’s posting so we can all set the record straight.

1) FEAT BC is a *grass roots* movement which has many members who are at times outspoken about the ongoing dispute with the BC Government and occasionally — and independently — choose to speak to the media on this very important issue This is a laudable initiative and is what occurred on the recent Bill Good show; we all thank Debra Antifaev and Bill Rice, who very eloquently addressed the many issues surrounding the long running autism treatment controversy in this province. I am sure the majority of FEAT BC members agree with the message Debra and Bill delivered regarding the government funded autism services industry in general, and the Giant Steps organization in particular.

2) Giant Steps:
FEAT BC has much respect for the parents who worked so very hard to create an alternative to the abysmal, ineffective generic services government supposedly offers to children with autism. Sadly, Giant Steps parents — working as hard as they have — have not let science be their guide. Some key points everyone needs to know about Giant Steps:

a) they were thoroughly discredited in the Auton case (Auton, July 2000). In the ‘Reasons for Judgment’, BC Supreme Court states:

[Par. 64] *Giant Steps has a day care license and provides services for approximately 15 children ages 5-12. It is partially funded by MCF and MOE. It offers "speech and occupational therapy, music pre-academic programmes, self-care skill training and community experiences." Dr. Jill Calder, a medical doctor and mother of an autistic child, described the main component of the treatment offered by Giant Steps as "a sensory-integrative approach." Wanda Bent, the Program Director for Giant Steps, agreed that the programme includes no applied behavioral therapy. NO APPLIED BEHAVIOURAL ANALYSIS* (emphasis added).

[Par. 64] *Dr. Frank Gresham [BC Government’s lead expert witness against families in the Auton case] agreed that facilitated communication, auditory integration training, and sensory integration training are controversial treatments that have little or no empirical support and show no benefit to autistic children. He also agreed that ineffective treatments for autism may be harmful if they supplant effective treatments that might have been utilized. He expressed the opinion that BC government funded programmes such as LEAP were not well established and they were probably not efficacious treatments for autism*

[Par. 66] *It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodology; they are positively discredited by one of the Crown's own expert witnesses." Auton vs. A.G.B.C. July 2000 Reasons for Judgment*

Other key points everyone should keep in mind about Giant Steps:

b) Giant Steps receives money under contract for the government from the Ministry of Education and Ministry for Children and Families.

c) The head of Giant Steps, Ms. Wanda Bent, submitted an affidavit in BC Supreme Court on behalf of government in support of Attorney General lawyers working to defend government in court against the families of children with autism. In the realm of *divisiveness* in the autism community, it is Giant Steps that apparently fired the first shot against families with their support of the BC government in BC Supreme Court. Uncomfortable as this history may be for Giant Steps, the facts remain irrefutable.

d) One of the major components of Giant Steps is a therapy called Sensory Integration. Not only did the GOVERNMENT’S key expert witness in court [Frank Gresham] discredit Sensory Integration as a treatment for autism, but so does the New York State Department of Health.

This is what New York health experts say about Sensory Integration: "Sensory integration is sometimes used as an intervention for children with autism. There is currently no adequate scientific evidence (based on controlled studies using generally accepted scientific methodology) that demonstrates the effectiveness of sensory integration for young children with autism. Therefore, the use of this method cannot be recommended as a primary intervention method for young children with autism." IV-60.

e) Rob states in his posting: "In fact, many of the principles of ABA are utilized by the Giant Steps program …". Court testimony of Giant Steps’ Head, Wanda Bent — while under oath — is at odds with this contention.

During the court case, Ms. Wanda Bent was on the stand under cross-examination and the lawyer acting for families asked her whether the principles of ABA were used in the Giant Steps programme. Again, under oath, she said *NO*. If indeed the principles of ABA are now being incorporated into the program, that is very good news and we welcome more information regarding this change in policy, as well as adequate supporting documentation. However, I must reiterate that Sensory Integration has NO science behind it — it is a purely experimental *therapy*. Consequently, FEAT BC does not at this time endorse this intervention for autism.

f) FEAT BC has conducted extensive data base research in Medline, Psycinfo and Eric, looking for scientific studies with outcome data on Giant Steps. To date, we have found one (1) article which describes the program in Boston. Even this article admits they have collected NO data as of yet on children in the Giant Steps program.

g) *Diet Therapy* and Giant Steps.

Here again, the Giant Steps school is offering what is widely regarded as a fringe treatment for autism, with no legitimate science to support it. The New York State Department of Health says the following about diet therapy:
"(1) The use of special diets that eliminate milk-products, gluten products, or other specific foods from the diet is not recommended for the treatment of autism in children.
(2) If food allergies are documented in a child using standard allergy testing methods, then appropriate dietary changes or other treatment may be needed, but this would be unrelated to the child’s autism.
(3) Allergy testing (using either intradermal testing or blood tests for specific antibodies) provides no information that is either helpful in determining appropriate treatment for autism or useful for predicting or measuring functional outcomes for children with autism." IV-104

3) Science and Religion — there IS a big difference

Rob’s posting contains the following remark relating to the *baby sitting* discussion on CKNW’s Bill Good program. Rob states, "It also smacks of a 'there is only one God and that God is/ Allah" mentality."

There is a very big difference between a belief in monotheism (the predominant belief system of not only Muslims, but also Christians and Jews) and belief in science. Although this is not the forum for a philosophical discussion on religion versus science, this point needs to be made. In religion, belief is central and evidence is not required or desired. One either believes, questions, or does not believe. Science however, is very different. Scientists attempt to avoid making assumptions, as much as possible, and are interested in evidence. Bona fide scientists in the field of autism are concerned with a very central question, which is: Does A cause B. In other words, does treatment (A) ameliorate condition (B), autism. Scientists go about designing experiments to answer that question. They design experiments in such a way that the only *belief* one needs is a belief that science will move us toward *truth*. This is central to the way Western medicine progresses, particularly in the 21st century. It’s entirely inappropriate to equate FEAT BC’s strong support for science-based, Lovaas-type ABA — what BC Supreme Court terms *uniquely effective — with religious zealotry. In the vernacular, this accusation is WAY out of line.

FEAT BC endorses evidence-based treatments, not treatments based on belief, anecdotes or testimonials. A science vacuum is very dangerous since it allows unqualified, financially motivated service providers to prey upon parents who are not science savvy, especially when it is government *selling* the fraud through their contracted service providers.

4) Divisiveness in the Autism Community

Rob accuses Bill Good’s guests of the following:

"I think this kind of attitude puts a stain on the integrity of the FEAT group, and on the autism community in general. Please let's work together, not fight amongst ourselves."

I understand the impassioned plea to work together; however, this is not always practical or possible for the following reasons:

a) people with their snouts in the government trough have a difficult time telling the truth — it is not in their best interest. The autism services industry in BC, collectively are recipients of multi-million dollar government contracts. In fact, even the Autism Society of B.C. — a parent group ostensibly there to help parents — receives more than $335,000 per year from the Ministry for Children and Families and has referred to themselves as a *resource for the Ministry for Children and Families*. Unfortunately, money has a tendency to co-opt organizations, no matter how well intentioned its founders may have been.

How can these organizations and service providers tell the truth if this puts their government funding in jeopardy? In fact, in order to keep those government contracts coming, members of the autism services industry –when asked in MCF’s time of need — had little choice but to answer government’s call to arms in the court battle to defeat families … families who were merely seeking Medicare access to effective treatment for their very ill children. Giant Steps’ participation in the NDP Government’s war on our disabled children is quite a shameful episode in BC autism history.

For the record, Rob — and all FEAT BC members really need to remember this fact — organizations by the name of Gateway, Laurel Group, CBI, LEAP Preschool and yes, Giant Steps … each and every one of them made affidavit submissions when asked by BC Government lawyers to support the NDP battle against our families in the BC Supreme Court Auton case.

Those facts do not make an honorable entry in the resume. In fact, it’s complicity of contracted service providers in the NDP’s war on autistic children that genuinely puts a *stain on the integrity of … the autism community in general*. I submit that the darkest chapter in BC autism history is the fact that contracted service providers — including Giant Steps — chose to fight shoulder to shoulder with NDP government lawyers against families in BC Supreme Court. THAT is what truly makes for a divisive autism community — allegiance to government money rather than our children. It most certainly isn’t Debra’s honest description and exposure of government sponsored corruption on the Bill Good program.

The truth is that these special needs contractees, all HAD to give evidence on behalf of government to convince BC Supreme Court that *things are working well* … because government, their funding source … asked them to. Fortunately, the courts rely on evidence and discounted all of them as ineffective in treating autism.

5) *The Earth is Round*
It's about time that *Flat Earth Societies* took a look at what they are selling, evaluated the data and realized the earth is, in fact, round. Eventually the truth comes out — even if it needs to come out in court. If you do not want divisiveness amongst autism groups and providers, my suggestion is let science be your guide and we will all be fighting for the same thing: effective, science-based treatment for children with autism!

Just my two cents.

Sabrina
(Miki's mom)

[Sabrina Freeman]

An open letter distributed April 24, 2001
***************************************************

RE: NDP platform, “Putting the Priorities of Today’s Families First; Publicly-funded health care for all — regardless of how much money you have” (NDP Platform, page 11)

Dear Editor:

The NDP platform says, “Our goal is equal access … to good public health care …”. Families with autistic children proved in court there is unequal health care and Government is “discriminatory”.

It’s day 271 since BC Supreme Court directed government to provide ‘medically necessary’ treatment; children with autism still don’t have effective, publicly funded treatment. Government’s answer is a so-called ‘Behavioural Intervention’ pilot program for 12% of autistic children under 6, excludes kids over 6, and is run by people discredited in court — autism treatment ‘Fast Ferries’ style.

Government bungling since BC Supreme Court ordered treatment for disabled children, lays bare abysmal failure.

Two-tiered health care continues; effective autism treatment is only available to families that privately pay. Government’s program holds out false hope, but actually harms children. The long-running NDP war against children with autism has many casualties … including their claim to a “social conscience”.

Sabrina Freeman, Ph.D.
Families for Early Autism Treatment of BC
Langley, BC
Ph. 604-534-6956
E-mail:skfreeman@featbc.org

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