[FEAT BC Admin]

MESSAGE FORWARD FROM: Andre Danyliu, andre_danyliu@telus.net

_________________________________________________

Hello

Barbara has a good point.

We should ask to appear before the liberal caucus to provide them with
facts about Autism and establish lines of communication so they don't
see us as litigious zealots the way the NDP obviously do.
We need to be politely firm; state our case and work with them. Perhaps
a task force to implement that which the courts and common sense
dictate?.

I'm prepared to help in this effort if there are others who agree.

FeatBC Discussion Board wrote:

> ————————————————————
> FeatBC Discussion Board: Room Three: Discussions about
> Government Topics
> ————————————————————
>
> By Barbara Rodrigues (Rodrigues) on Wednesday, February 14,
> 2001 – 12:48 pm:
>
> Hi Everyone:
>
> I was wondering what thoughts everyone has on the upcoming
> election. Does anyone think a change in Government will
> help our kids and push through individualized funding for
> proper 'Lovaas' ABA programs and not these great little
> 'eclectic' programs that the Government's putting together.
> I mean, yes we will get a different Government but the
> people in the Ministries are not going to change, right?
>
> What I am asking is how do we go about getting a firm
> answer/commitment from the new party in order to see some
> postive changes for our kids. Now, I know our MLA has been
> greatly supportive, etc. but are things really going to
> change in terms of funding for our kids if the Government is
> changed?
> What should we do in terms of trying to make that a reality?
>
> Thoughts/suggestions?
>
> Barbara
> Jeremy's Mom
>

[FEAT BC Admin]

MESSAGE FORWARD
_________________________________________

Subject: RE: The FEAT BC Classifieds
Date: Mon, 12 Feb 2001 12:24:51 -0800
From: "Jerome"

Jason I find the Wisconsin Group excellent but have no experience with any
other group.

We have been working with them since October, so far so good.

We may be one a the families with the most experience with WEAP.

[FEAT BC Admin]

Subject: Re: Room One: General Topics Discussion
Date: Mon, 22 Jan 2001 23:07:24 -0800
From: "Jennifer Enns"

Hi,

We're Andrew's parents in Chilliwack; sorry to hear about your seizure
episode – it sounded upsetting and frustrating at the very least. I wanted
to reply for a few reasons, not the least of which is that I'm a doctor and
therefore part of the medical establishment and also to reassure you re some
of your concerns.

Seizures, while terribly frightening, are usually not as dangerous as they
look. Partial ones are also amazingly hard to diagnose and the diagnosis
has evaded the most experienced and sensitive clinician (which I likely am
not!) The important thing is to determine the underlying cause, ie febrile
(fever), infectious (meningitis, sepsis, etc), "epilepsy", tumour, or
whatever. The workup is not terribly hard and is something I would not be
unhappy letting our GP do. Starting an anticonvulsant, booking an EEG, CT
scan and eliminating the standard metabolic abnormalities is certainly
within any doctors capability. With respect to drug choices, most
physicians believe that there is no BEST anticonvulsant and to use the ones
you have good experiences with and are very familiar with. That way,
unusual side effects (good or bad!) don't confuse you and you can be
confident what to do if the drug is, or isn't effective. Dilantin is an
older drug and therefore has the longest list of side effects in any manual
(have you ever looked up ASA or Tylenol?) but I'm surprised how often my
most challenging seizure patients end up on it after "better" drugs have
failed to control their symptoms. Having said all that, there are many
other meds available and if you're uncomfortable with it, express this to
who is prescribing it and get an alternative. As always with changing
chronic therapy, remember that you might get something that works better or
worse than what you're on.

A couple of other thoughts (and I hope this is helping), does your child
take any Ritalin or Dexedrine that could have contributed? Such meds can be
really helpful for our kids, but are known to lower seizure threshold.
Also, if he's never had a seizure before and had this one with a serious
concurrent illness, a case can be made to withold treatment entirely – I
have a patient with cerebral palsy in my practice who has a seizure every
three years or so; the parents have decided not to treat her simply because
it doesn't seem worth it to take a thousand doses of a med to prevent one
seizure! For children who get seizures with fevers, some parents have doses
of clobazam (or similar drug) to give at the onset of the illness…I
digress. Suffice it to say there are all sorts of options in
pharmacotherapy for seizures.

By the way, EEG's are often really minimally helpful. If they are abnormal,
they at least confirm what you already know – this person is susceptible to
seizures. But a normal EEG rules out nothing. They also aren't too hard to
read. Most of the time, they come back with some really ingenious version
of "borderline abnormal – clinical correlation required". This is a really
cool way of telling the clinician to use his judgement as to whether the
episode was a seizure or not (and it sounds like you already know).

About your rights as parents? You have all of them! You are entitled to
give or refuse any treatment that is proposed for him. What you aren't
entitled to is to expect doctors to provide what they do not feel is in the
best interest of your child. While this may sound ridiculous, I can tell
you there are patients in all areas of medicine who feel that they should
determine each consultation, investigation, medicine, etc. A sign of a
healthy relationship between your doctor and yourself is that you are able
to expresss your concerns, he/she responds in a way that provides you
confidence (even if it wasn't what you were expecting) and that this is
followed up by a reassessment if necessary. If you don't feel this has
occurred, consider finding a doc who achieves this for you, or look inward
at whether all of your expectations can be reasonably achieved with today's
knowledge. It has been personally painful for me to realize the limitations
of my own profession's ability to assist us with our son's struggles – like
any parent, I wish there was much more that I as a Dad, and a doctor, could
provide.

GE

[FEAT BC Admin]

TO: FEAT BC Discussion Board/e-mail list members
FROM: Board Admin.
RE: Posting

Hi everyone,

A quick update regarding the status of the FEAT BC discussion board.

Posting has been unavailable for about a day due to a disk space issue at our web server — apologies for any inconvenience.

The problem has been corrected; the board is up and running.

Thank you.

Isaac (Miki’s Dad)
Board Admin.

[FEAT BC Admin]

message forwarded from Paul L. Thibodeau:
____________________________________________

There is only a few days left before election day. So far there is no indication that the media will cooperate with us.

We must all make a last effort..IMMEDIATELY .. or NEVER. After the election, like in the past, it will be virtually impossible to obtain a satisfactory resolution of this dilemma which adversely affects the welfare of our autistic children.

Let's all make a final effort (parents, friends, relatives, etc.) .IMMEDIATELY .. by sending FAXES and/or E-mails to the five (5) party leaders and to as many local candidates as possible.

This issue must be brought (prior the election) in the open for our children's sake.

For instance, your communication needs to be short and could take the following form.

TO: – NAMING THE POLITICIAN

RE: – 3-TIERS HEALTH CARE SYSTEM.

Please note (Mr. Candidate) that your response, or lack thereof, for consideration of the URGENT need of autistic children (see attachment) will, surely affect the voting decision, on the 27th, of a large number of voters.

According to available estimates, one Canadian newbirth in 500 or 1000 is, or will be, afflicted with autism.

Your public comments and support (Mr. Candidate) will, indeed, be greatly appreciated by many thousand voters.

Yours sincerely

Paul L. Thibodeau

PHONE: – (613) 828-8129

E – MAIL: – ei415@ncf.ca

[FEAT BC Admin]

Below is an excerpt from a brief issued by Friends of Children with Autism (Ontario) FCWA, courtesy of Paul L. Thibodeau (full brief is at https://featbc.org/downloads/FWCA.pdf).

_______________________________________________

The Honorable Paul Martin and the Government of Canada’s Economic Statement.

The Government of Canada’s pamphlet of October 18, 2000 called Economic Statement and Budget Update – Overview, includes the following points:

Canada enters the 21st century with greater resources and more choices than it has had in decades. The choices we make will mirror our values as a society and our obligations to each other as citizens.

With a strong economy and budgetary surpluses, the Government has been able to cut taxes and invest in Canadian’s key priorities of health and education.

The government makes a commitment to deliver the $21.1 billion in federal funding to strengthen Canada’s treasured system of universal health care as agrees by the Prime Minister and premiers in September [2000]

[The federal government is committed to] providing $2.2 billion to the provinces and territories for services to the youngest of out children;

How can the level of miserliness in funding universal health care for children with autism by the provinces continue given that $21.1 Billion for universal health care was promised to the provinces in September 2000 by the government of Canada?

Just over a month ago the federal government also promised the provinces and territories $2.2 Billion “for services to the youngest of our children”. Young children with autism are amongst the youngest of our children and they are being denied medically necessary treatment and hung out to dry by the Ontario government.

A Question of Parents with Autistic Children

One of the questions parents of autistic children are asking is … “When will our society’s obligations to children who suffer the most severe developmental disorder of childhood become evident by fully including these children in Canada’s treasured system of health care and providing intensive behavioral intervention, which is the only scientifically proven treatment that works?”

A Question for Prime MinisterJean Chretien and Health Minister Allan Rock

Will Mr. Chretien and Mr. Rock make a visible commitment to the families of autistic children across Canada to use the considerable resources of the federal government to guarantee that no autistic child in need shall be without universal, accessible, comprehensive, portable and publicly administered specialty autism treatment, including the medically necessary and only scientifically validated program of intensive behavioral treatment for correcting and reversing autism, Applied Behavioral Analysis or Intensive Behavior Intervention.

Two Questions for Candidates for Office as a Member of the Canadian Parliament.

1. How many candidates running for office as a member of parliament and which parties are prepared to make a commitment to solve this huge gap in medically necessary services for autistic children?

2. Will you support government allocation an adequate portion of the billions of new dollars the federal government plans to transfer to the provinces, to ensure that Canada’s children with autism can reach their maximum health and remediate to the fullest degree possible their profoundly handicapping disability?

Politicians from all parties should work to guarantee that "medically necessary" intensive behavior therapy services are provided to young autistic children at developmentally critical periods in their life cycle.

Prepared by:
Friends of Children with Autism (FCWA), Toronto, Ontario *

Contacts for this Brief.

Dana Vrooman, Toronto, Ontario, Mother of a 4 year old daughter with autism and no public treatment for the condition. tel: 416-494-0041
Paul Vrooman, M.S.W., Toronto, Ontario, Grandfather of Dana’s 4 year old daughter with autism and no public treatment. tel: 416-406-1933 Cell tel: 416-299-1755
Suzanne Wetzel, Ph.D., Sault Ste Marie, Ontario, Mother of a 6 year old son with autism and no public treatment for the condition. tel: 705-742-6552
Huguette Boisvert, Ottawa, Ontario , Grandmother of a 4 year old boy with autism and no public treatment for the condition. tel: 613-722-5068
Simon Wynberg, Toronto, Ontario, Father of two twin boys with autism and no public treatment for the condition. tel: 613-961-5546

_________________________________________________

* Friends of Children with Autism (Ontario) FCWA is a group of families whose goal is to
get medically necessary treatment, education, social services and financial supports for their own young children and those of other Ontario families in order to ameliorate the devastating effects of a serious neurological disorder of the brain called autism spectrum disorder or pervasive development disorder.

FCWA is challenging the government’s continuing refusal to provide essential levels of universal, accessible, portable, comprehensive and publicly administered health care to all children with autism spectrum disorder including the medically necessary and only scientifically validated program of intensive therapy for correcting and reversing autism, Applied Behavior Analysis or Intensive Behavioral Intervention.

One of the activities of FCWA has been to retain the services of Toronto lawyer David Corbett to launch a legal action against the Government of Ontario for its failure to provide adequate health care, educational services and funding for children with autism in Ontario.

FCWA is challenging the continuing failure by the Province to recognize the most basic rights of children in Ontario: the rights to necessary medical care and an education.

(full brief is at https://featbc.org/downloads/FWCA.pdf).

[FEAT BC Admin]

The Canadian Press

National general news Wednesday, November 15, 2000

Quebec parents want to file lawsuit for better services for autistic kids

The Canadian Press

LENGTH: Short

SUBJECT: Justice; Politics; Health

HOUR OF PUBLICATION: 23:27

MONTREAL (CP) – After 10 years of lobbying for better services, the parents of 46 autistic children want to take the Quebec government to court.

The parents say they are forced to scrape together $40,000 per year for private services not offered by the province.

They are asking Quebec Superior Court for permission to pursue a $15-million class-action suit.

"It's a complete injustice," said group spokeswoman Linda Gaudreault.

"Not only do we have to pay but the services are inaccessible. All kids have the right to a future. Today we're forcing the government to do something."

The parents want the government to provide a treatment called ABA, or Applied Behavioural Analysis. It treats autism as a behavioural learning disability not a form of psychosis.

A spokesman with the province's health ministry said he could not comment on the lawsuit but noted the department gave $8 million to regional health boards this year urging them to prioritize autism.

The plaintiffs claim they have not seen the money.

They're invoking the Quebec Health Act and the Charter of Rights and Freedoms, following the lead of successful claims in Ontario, British Columbia and Alberta.

The B.C. Supreme Court recently concluded that early, intensive intervention was a "medical necessity" and that the province had violated the rights of children by refusing their access to ABA treatment.

In Ontario, a $75-million class-action suit by 55 families led the government to earmark $19 million for autistic children.

(Montreal Gazette)

[FEAT BC Admin]

FEAT BC ANNOUNCES EXCITING LECTURE !
_____________________________________

The Wisconsin Early Autism Project will be in BC in November to give a talk about their replication site and the exciting new data they have collected from the autism treatment work they do in Wisconsin.

The speakers will be Dr. Glen Sallows, WEAP's founding director, and Bohdanna Popowycz, Clinical Director of one of the multi-site replications affiliated with Dr. Lovaas and UCLA. These are two very informative presenters. We highly recommend that parents of newly diagnosed children or parents who are between consultants come out and hear Dr. Sallows and Ms. Popwycz talk. As always, therapists and other interested professionals are welcome to attend.

– Date: Friday, November 10, 2000 (next Friday night).
– Time: 7:00 PM to 9:00 PM
– Place: St. Frances-in-the-wood church. For directions to the church, download a map at http://www.featbc.org and click on FEAT BC Events. The map is listed under the parent group meeting.

– Admission: No charge
– Questions?: Call FEAT BC at Ph. 534-6956

[FEAT BC Admin]

Call for Action.

Please find attached the list of addresses of the Federal party leaders which has inadvertently been omitted from my October 24 e-mail.

If you did not send your letters yet, it is advisable to do so within the next few days. This will allow three weeks for the candidates to respond before election day.

Paul L. Thibodeau

10-28-2000

The party leaders can be reached at the following addresses. The same letter can be addressed to more than one party leader.

———————————————————————————————————————————

The Rt. Hon. Jean Chretien, P.C., M.P. Phone:- (613) 992-4211 (613) 237-0740
Prime Minister of Canada,
Room 309-S; Center Block FAX:- (613) 237-8958 (613) 941-6900
House of Commons
Ottawa, Ontario e-mail:- pmo@pm.gc.ca info@liberal.ca
K1A 0A6

———————————————————————————————————————————

Mr. Stockwell Day, M.P. Phone:- (613) 996-6740 (613) 236-6969
Leader, Opposition & Alliance 1-888-733-6761 (403) 269-1990
Room 409-C; Center Block
House of Commons FAX:- (613) 236-7957 (403) 269-4077
Ottawa, Ontario
K1A 0A6
e-mail

———————————————————————————————————————————

Mr. Gilles Duceppe, M.P. Phone:- (613) 992-6779 (514) 526-3000
Leader, Block Quebecois
533-S; Center Block FAX:- (613) 954-2121 (514) 526-2868
House of Commons
Ottawa, Ontario e-mail ducepg@parl.gc.ca gduceppe@bloc.org
K1A 0A6

——————————————————————————————————————————-

The Rt. Hon. Joe Clark, M.P. Phone:- (613) 995-8231 (403) 263-7424
Leader, P.C. Party
436-N; Center Block FAX:- (613) 996-9349
House of Commons
Ottawa, Ontario e-mail joeclark@mail.pcparty.ca
K1A 0A6

———————————————————————————————————————————

Ms. Alexa McDonough, M.P. Phone:- (613) 995-7224 (902) 426-8693
Leader, N.D.P
Room 442-N; Center Block FAX:- (613) 995-4565
House of Commons
Ottawa, Ontario
K1A 0A6

———————————————————————————————————————————

[FEAT BC Admin]

Open Letter from Paul L. Thibodeau
______________________________________________

RE: – Autism – A Call to Action 10-24-2000.

The current Federal electoral campaign offers an excellent opportunity for action and, hopefully, tangible results. Thus far the Federal and most Provincial governments have failed to properly recognize the need for MEDICALLY NECESSARY SERVICES to AUTISTIC CHILDREN (of any age) and proper support (financially and otherwise) for their families.

During this campaign a QUICK and COORDINATED PLAN OF ACTION by families of autistic children, as a group, could eventually bring about immediate and decisive action by our legislators. The support by one party leader is all that is necessary to start the ball rolling. Who knows, perhaps a candidate like Mr. Day, the new boy on the block, or any other party leader, will realize the seriousness of the situation and include our concerns in his party platform.

As many as possible of us need to contact their local candidates and/or party leaders with their concerns. Any assistance from the media, during the campaign, would also be an asset.

It is presently a very critical time for our politicians. The personal experience of each of us would likely be more than sufficient to obtain a firm commitment from some candidates. You may also wish to include some of the following points in your verbal and written requests: –

1)- Due to the large number of Canadian autistic children, their families, relatives and friends, collectively we likely represent a few hundred thousand voters.

2)- How much longer will Canada remain the No 1 country in the world if it continues to deny MEDICALLY NECESSARY SERVICES which have been relatively freely available for the past 25 years to autistic children in the U.S.?

3)- The cost-benefit studies appearing in the medical journals clearly confirm that the cost to society (government and families) of untreated individuals is 7 to 10 times greater than that of those who have received proper treatments. These studies also emphasize the improved quality of life for all concerned.

4)- Properly qualified professionals in ABA/IEI treatment therapy are relatively non-existent in Canada. The few families who have the necessary financial resources must enlist the services of "Consultants" through U.S. agencies and train their own "Therapists". Thus, due to limited family financial resources, the majority of Canadian autistic children (of any age) are deprived of the "MEDICALLY NECESSARY SERVICES" for their neurological condition.

5)- The costs stated in (4) above are usually not covered by any insurance or by Government programs. For many years, Revenue Canada has accepted some of these costs as "BONA FIDE" medical expenses. During recent years, the Canada Customs and Revenue Agency has decided, in some cases, that these costs are no longer acceptable as medical expense tax credits.

6)- On or about July 26, 2000, the Hon. Madam Justice M.J. Allan, B.C. Supreme Court, Docket C 984120, ruled that the Crown is violating the rights of autistic children and their families according to section 15(1) Charter of Rights and Freedoms.

Individually, we are at the mercy of the legislators and bureaucrats…. UNITED WE SHALL SUCCEED.

Paul L. Thibodeau.

Phone (613) 828-8129.

E-mail. Ei415@ncf.ca

[Author]

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