[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Sabrina Freeman]

From: Sabrina Freeman
To: FEAT BC discussion board members
RE: BC Supreme Court decision

Hi all.

As many of you may have heard, Justice Allan recently handed down a supplemental decision regarding remedy in the Auton case against the BC Government. Here are the conclusions of the judgment:

[65] An "appropriate and just" remedy must be determined by the particular circumstances of the case under
consideration. I conclude that the petitioners are entitled to the following relief:

– There will be a declaration that the Crown's failure to provide the infant petitioners with effective
treatment for their medical condition of autism constitutes a denial of their rights under s. 15(1)Charter.

– There will also be a direction that the Crown fund early intensive behavioural therapy for children with autism, including autism spectrum disorder. It is presumed that the Government will act in good faith in implementing the appropriate policies to meet its constitutional obligations.

– The adult petitioners are each entitled to an award of $20,000 for monetary damages.

You can download the decision from the FEAT BC server at https://featbc.org/decision2001.html or from the BC Supreme Court site at http://www.courts.gov.bc.ca/jdb%2Dtxt/sc/01/02/2001bcsc0220.htm or at

We are gratified Justice Allan has awarded damages for a Charter breach, even if only for symbolic reasons. Unfortunately, these amounts do not come close to what is required to help parents with the onerous burden of paying for their programs.

The judge affirmed the BC Government continues to violate the constitutionally guaranteed equality rights of children with autism to effective treatment. She further directed that government “fund early intensive behavioural therapy for children with autism, including autism spectrum disorder”. Although the judge did not specify in her directive that this must be Lovaas Treatment, it is generally recognized that Dr. Lovaas pioneered the intensive behavioural therapy named after him; the Lovaas treatment protocol and Intensive Behavioural Therapy are one and the same.

Regarding HOW treatment will be funded, the Judge deferred to Government for the time being. This means she is allowing the Government more time to develop their autism treatment project known as the Provincial Centre for Autism and Related Disorders (P-CARD). Rather than providing individualized funding to parents running intensive behavioural treatment programs, the Government has elected to develop centralized diagnostic and treatment sites — there are four sites. The Supreme Court judgment presumes government will “act in good faith” in the implementation of the P-CARD; in other words, the judge is taking Government at their word — for now — when they assure her there will be effective, publicly funded autism treatment capability in place. Unfortunately, the experience many of us have had is that this government is not working in good faith. The judge welcomes us to appear before her if we can show that the government is not satisfying her judgment.

IMPORTANT: We ask that everyone on this discussion board — families and professionals — let us know what there experiences are with the government autism project referred to as P-CARD in the court case; it may take on different names. FEAT BC will document everything for possible future use in court.

We will keep all of you posted on future developments!

Regards,
Sabrina

[Shanan Rice]

SO…WHAT'S THE DEAL???????
The news is saying today that the government
has been ordered to pay for the treatment of
our children. Is this true??? Should we be
jumping up and down, or is this something we
need to be cautious about? (I'm sure a lot of
you have heard the same news and are
wondering about this too) If anyone has the
real "scoop" on this…..I'm all ears!

[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)

[Sabrina Freeman]

BC Supreme Court Advisory
_________________________

Hello everyone,

This message is to advise that the next phase of the autism legal action against the Government of BC will take place in BC Supreme court on the following dates:

– Tuesday, November 14
– Wednesday, November 15

The proceedings will take place in the Supreme Court section of the Vancouver Law Courts. The address is: 800 Smithe St., Vancouver. Parking is available underground. The court room number will be posted on a board in the main lobby — Look for “Auton vs. AGBC”.

Court is in session from 10:00 am to 12:30 PM and 2:00 PM to 4:00 PM. Everyone should arrive by 9:45 am to allow enough time to settle in — it is very important that everyone is seated and quiet by precisely 10:00 am when the Judge enters.

As in the 11-day April hearings, there are a few important court rules we need to keep in mind:

– tape recorders, cell phones and pagers are not permitted in the courtroom.
– jeans are not permitted in the courtroom
– no comments, moans or groans are permitted. The judge may ask a person to leave the courtroom for these reasons. Government lawyers may say things that you vehemently disagree with. However, it’s very important for everyone in the courtroom to stay calm and in control.

Lawyers representing the parents have informed me that they will not be available for questions during the breaks or during lunch since they will be working on the case during these times. The lawyers have instructed
the steering committee to take all questions anyone has regarding the case — we will make sure they receive the questions after proceedings conclude that day.

I very much look forward to seeing you in the courtroom!

Sabrina

[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

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

[Isaac]

Who are B.C.'s Waiting Children?
_________________________________________________

A provincial election can’t be far off, judging by the government media blitz coming out of Victoria lately.

The Children’s Ministry launched an expensive media campaign this week to show voters their “caring” side with its “Adopt a Child in BC” campaign. The campaign slogan reads, “kids can’t wait to have a family” (Madison Avenue warm ‘n fuzzy kiddie font and streaming videos can be viewed @ http://www.mcf.gov.bc.ca/adoption/new/index.html). An equally compelling slogan could easily read, “Kids can’t wait to have effective autism treatment” (anyone want to buy a full page ad for that one … we’re easy to reach).

The government campaign asks, “Who are B.C.'s Waiting Children?”
Apparently, “Some of B.C.'s waiting children have special placement needs due to … developmental … or behavioural challenges. They might have special psychological … needs, and may need special supports to help them grow and develop.” (From web site http://www.mcf.gov.bc.ca/adoption/new/adopt/who.html)

So let’s see if we’ve got this straight. Government steadfastly refuses to pay for autism treatment, even though it’s “medically necessary” according to BC Supreme Court. As a result of government failure, some kids get placed WITH government because their autistic disorder deteriorates; i.e. absent effective treatment, some kids progressively get more out control and the burden on family becomes intolerable. Then, tragically, some untreated kids ultimately become “B.C.'s Waiting Children.” With an election on the horizon, government bureaucrats (and/or spin doctors) likely have concluded there are too many special needs kids in government care. Why not to try to fix the problem with a multi-million dollar TV ad campaign (http://www.gov.bc.ca/communications/media/). The logic likely goes something like this: “lets do a glossy sell job to find adoptive parents for all those special needs kids who are overloading the system and costing us A LOT of money. An ad campaign will also pump up MCF’s flagging caring and compassionate image for the upcoming election”. What about new money to support those prospective adoptive parents? Sorry, this isn’t about substance, we’re manipulating the public here.

The new MCF campaign says, “Some of B.C.'s waiting children … may need special supports to help them grow and develop.” Ironically, government neglect failed these special needs kids in the first place. The necessary “special supports to help them grow and develop” are simply the cruel, empty words of bureaucrats — there is no new funding for MCF’s “Adopt a Child in BC” initiative. This lends support to those who argue the “Adopt a Child in BC” is just pre-election NDP media spin, paid for with lots of your tax dollars. The propaganda campaign is strongly reminiscent of the 20 million dollar pre-election government media blitz in the Clark era of Spring 1996 — different players, same game plan.

The Minister for Children and Families dutifully set out this past Tuesday to sell the government’s “Adopt a Child in BC” campaign on CKNW’s Bill Good Show. Mr. Good asked some tough questions. Not surprisingly, the answers fell far short of the mark. Bill Good said families listening to the Minister “would gag” on her answers. The Minister’s interview is at the CKNW site: http:www.cknw.com (up to October 31).

Meanwhile, FEAT BC members may be interested to know that our government has decided to add to the $400 million they already spend on home-care health care services (http://142.36.183.50/4DClient.acgi$nritem?4109 … “Home care expanded under B.C.'s health action plan”). This funding includes the Ministry of Health’s individualized funding program for home palliative care that gives spouses over $36,000 per year to care for an ailing member of their family … IN THEIR HOME. So… the priorities of this government dictate individualized funding is available from the Ministry of Health for OLDER British Columbians — at the end of their life — but there will be no individualized funding in BC for young, disabled children, struggling at the BEGINNING of their life.

In an ironic twist, Victoria is asking British Columbians to send in their ideas on how to best honour the “Trudeau legacy” (http://www.gov.bc.ca/bcgov/popt/trudeau.htm). One of the government’s suggestions is "Placing a portrait of Trudeau next to the Canadian Charter of Rights and Freedoms in the B.C. Legislature". The Canadian Charter of Rights and Freedoms — the supreme law of Canada — is what the Dosanjh government is now violating according to the BC Supreme Court. The word “hypocrisy” is all that comes to mind.

A photograph of Trudeau in the BC Legislature would be nice, but here is a more appropriate honour of the Trudeau legacy: BC should COMPLY with, and abide by, the constitution Pierre Trudeau brought home to this country. We cannot honour the Trudeau legacy without honouring the charter rights of disabled children.

BC’s children are still waiting.

Isaac
(Miki’s Dad)

[Deleted User]

Hi,
I wanted to respond to the post about the Federal Elections coming up.
My name is Norrah and I was/am from Ontario. I recently temporarily moved to Florida to place my son in an ABA school because of circumstances in Ontario. I am still to this day with out funding for " high quality scientifically based Lovass therapy". I am paying 30 grand US per year for my child to get what they refused to give him in Ontario.
That being said, in the last two years ( and I may take a bashing for this but if it gets people up and moving then…)I have seen B.C take serious action in the attempt to change autism services to autism treatment and have it funded.
I have seen Ontario go from 0 funding other then SSAH hours being quietly used to the absurd and joke of an " IBI" program. They can't even call it like it is.
However forgive me if I am wrong here, but I do frequent the ME list and other lists where Canadians find support and I RARELY hear of any other provinces taking significant or serious action against the gross negligence of the government and the beurocrats that run them.
I think that if we are to be UNITED , then no buy outs are acceptable. IBI is a complete JOKE. It is so full of holes and surrounded by broken promises, it is merely a here go away campaign to pacify a group of people who do have the will and the means to make noise.
Did you know that the Ontario government invested 100 million in new livestock after the ice storms…and they are putting 19 mil a year into IBI…hmmm so in five years our CHILDREN will have the same value as a COW.
So far as I can see we have not united as a country in our fight. There are very few , if even this forum that escape government Lurkers…for us to discuss strategy etc….
As long as small groups can be " bought off" the bigger picture can not be achieved…and THEY know this and thus IBI thus " pilot projects".
I just thank G_d everyday for B.C. and Sabrina ( who makes more sense than anyone I know)and think in fact it will take you winning the case at the Supreme Court Level.
I some time ago sent out a statement to every provincial parlimentary member and some federal, all parties…although I did receive response from all parties, I did NOT receive ANY action to aide me…below for those interested is what was sent ….
not too be the pesimist in all this….but if we are to be UNITED we must ALL unite.
warmly and with great respect for FEAT and B.C.
norrah
STATEMENT
I am coming forward to make this statement in hopes of saving my child’s life. No parent should EVER have to do this.

My name is Norrah Whitney and I am a mother of a three and a half-year-old boy who is fighting for his life.
In the summer of 1998 my son was seen by Dr. Mahoney of Hamilton Health Sciences Corporation-Chedoke McMaster Hospital in Hamilton Ontario. He did not appear to be developing normally.
He would stack things over and over, act as if he couldn’t hear at times, he had no understanding of language whatsoever, and he was silent not able to speak a single word. He would smear his faeces at any given opportunity. He could never be left alone.
The ultimate outcome was a diagnosis of autism. We were devastated and rightfully so. Autism is a disorder, which usually presents itself early in life, there are marked impairments in social , cognitive and language areas. Left-untreated autism is devastating, almost always guaranteeing a life of unhappiness and total dependence and institutionalisation.
I was told by Dr. Mahoney to basically put him in day-care, I am so grateful that I did not listen to this man.
I had already suspected autism and began prior to that initial meeting researching it on the Internet. I stumbled across something that stood so far apart from all other material available that it immediately caught my attention. It was claiming a 47% recovery rate from autism. ABA was the hope that I was looking for, what it became was the very instrument that is saving my child’s life.
Applied Behaviour Analysis, commonly referred to as A.B.A. or “ Behaviour Modification” is now widely practised throughout the United States and around the world with remarkable success in treating young children with autism. In fact, A.B.A. has proven itself to the ONLY treatment for autism that offers scientific data as evidence of effectiveness.
While A.B.A. is extremely structured and is very intensive, involving approximately forty to forty-five hours per week , one must realise that for the children, it is enjoyable and rewarding. A.B.A is based on the premise of positive reinforcement. A good A.B.A. program is a fun A.B.A program. Children’s responses are rewarded with videos, favourite foods and toys, walks to the park, trips to the store, hugs, tosses in the air. Teaching is done on a one to one basis, often the only way an autistic child can learn.
I wanted and still want to save my son from autism so I implemented a home program immediately. The only problem was that I didn’t have any money. My husband and I had separated due to the stress and I moved in with my mother and applied for assistance. I was struggling to do the best I could to work with my son, reading until all hours of the night…not knowing what I was doing, not being able to afford a consultant. My son’s life was on the line and I could not afford to save him. I went to sleep everynight crying knowing that if my son didn’t recover it would be because I was poor. If my son were lost to autism it would be because his mother and father couldn’t afford to pay to save their child’s life. No one should have to live with that.
That is when I decided I would contact my local MPP, Elizabeth Witmer who also currently happens to be the Health Minister of Ontario. It took several months, but after a phone call to her office saying I was going public in the Hamilton Spectator I was seen within a matter of days. At the time I didn’t understand their motivation to then move quickly on my request, but bear with me and you will understand.
The meeting took place with another family, a staff member from her local office, Lori Turik her policy advisor and Mrs. Witmer herself. I made Mrs. Witmer aware of how grave my situation was and informed her that we would file a section 30.2.a under the Family Law Act. This is a section in the law that may be issued at the Minister of Community and Social Services discretion. It states that if a parent either fails to or cannot provide the necessities of life the Minister may make application to extend protection to that child. ABA was and remains critical to my son’s life and I simply can not afford the cost of this necessary medical treatment. Without it he will be lost to a life of reliance and institutionalisation. It may be worth mentioning that failing to report a child in need of protection is a criminal offence in this province.
They said they would see what they could do to help me. I left there that day believing in the Health Minister of Ontario. But that belief would soon be shattered.
They not only did not help me, but my assistance cheque was cut from 511 dollars per month to 463 dollars per month and my Special Services at Home hours were cut too!
And that is when I decided that I would fight for my son’s life and his right to EFFECTIVE MEDICAL TREATMENT for his autism, even if it meant sacrificing all privacy at one of the most painful times in my life.

A two tiered Health Care System for autism has developed in the province of Ontario, due to the absence of government involvement in funding autism treatment for children and education for treatment professionals. Those with the financial resources are putting effective autism treatment programs into place.Those without the resources are now outside the ‘ new’ health care system with grave consequences for their families and affected children. The right to Medicare, as one of the defining features of Canadian Nationhood, must extend to medically necessary autism treatment for all children who require it. It is fundamental that an autistic child’s access to medically necessary autism treatment be solely based on need and not individual ability to pay. Universality and Comprehensiveness, as guiding principles of health care system of Canada and the Provinces, must apply to medically necessary autism treatment for children.
Lucas Burrows IS a victim of Mike Harris’s two tiered Health Care system.
In the meantime while I was fighting for my son’s life in the therapy room, a lawyer came forward offering services pro bono ( in light of the circumstances) and on my son’s behalf he made the application and statement of claim regarding the section30. It was filed with the Children’s Aid Society of Waterloo, Minister of Community and Social Services and Minister Witmer.
But the Children’s Aid Society , Peter Ringrose said and I quote “ I regret to say that Family and Children’s Services is unable to agree to your request, as the agency has recently been instructed by the Ministry of Community and Social Services not to enter any new Special Needs Agreements.” Final approval from this Special Needs Agreement was needed by Janet Ecker. She slammed the door on a three and a half year olds right to life, yet she was quoted in a November 1998 Government Press Release as saying “ The government believes strongly in creating services that help children get a better start in life. “ “ These programs directly benefit children at an early age and help prevent problems later in life” I guess she just didn’t mean the “ autistic “ ones. Janet Ecker a hypocrite? And not three months later appointed as Minister of Education eagerly smiling for the television cameras as she toured schools with her new title pretending that education is a fundamental right while slamming the door on my son’s education. So I guess that fundamental right does not extend to autistic children either.
In the same release the Minister responsible for children Minister Marland was quoted as saying “ The enhanced program (referring to the Healthy Babies, Healthy children program) builds on the strengths of families and community members to ensure ALL children have the same opportunity for a bright and healthy future”. She also was quoted with regards to a separate announcement as saying “ Our government is committed to meeting the needs of our most precious resource – our children” I guess she too meant all but the autistic.
I do not know what ‘ programs’ Mrs. Ecker is referring to when she stated “ These programs directly benefit children at an early age” , I assure you there is NO program for my son. And I assure you that one year later after my battle began that Lucas Burrows is still being denied life saving MEDICAL TREATMENT at this time by Mrs. Witmer, Janet Ecker the Children’s Aid Society and Premier Mike Harris.
Just after my section 30 was denied, I happened to meet a woman from Waterloo, whose child also was suffering from autism. What she told me turned my world upside down.
Her father had sat face to face with Elizabeth Witmer over three years BEFORE my meeting with her, begging for money for his grand -daughters ABA program. She knew. Elizabeth Witmer knew that there was a SUCCESSFUL MEDICAL TREATMENT FOR AUTISM THAT WOULD/COULD SAVE HUNDREDS IF NOT THOUSANDS OF CHILDREN’S LIVES AND SHE DID NOTHING. They did NOT inform the public of this crucial information. They did nothing to educate doctors about the CHAT list which to 95% accuracy can “ catch” a child at risk as young as 18 months. Something that can be easily performed by a family physician in a matter of minutes.
I was stunned beyond belief. For all intensive purposes this would be like finding out that there was a “ cure” for 47% of children with HIV, the rest having a substantial better quality of life and not disclosing it to the public. Of course it would not happen. Can you imagine what the public outcry would be upon finding out that the Government of Ontario wilfully withheld this information and children died as a direct result of this? Then so to should you be outraged by what has been done to innocent autistic children in the Province of Ontario. Mr. Harris and Elizabeth Witmer are sending a clear message on the value of an autistic child.
In a letter that was sent to me by Mrs. Witmer just prior to the elections ( no co incidence here I assure you ) with a proposed 19 million dollars included in the budget for autism. Specifically Intensive Early Intervention. She wrote and I quote “ I trust you will see this as a positive step forward” . No Mrs. Witmer I see this as an effort to cover your •••. You realised by our meeting that families were finding one another, and you will know what I mean by that. Why did I receive phone calls from your office wanting to know what I was going to say to the press in my second release in your home riding of Waterloo, Ontario, after you found out that Pam Orzenchowski existed whose father I am sure you are familiar with.
Why did you want to know their names so badly that your office contacted my home several times in a matter of hours when it took me three months just to get a meeting with you as my MPP?
19 Million dollars is a slap in the face to these children. It’s a pittance of what is needed to help save these children. It is a “ here go away amount of money”. So long as my child continues to be denied this life saving therapy I will not go away.
According to the Annual Government Audit , available on the Internet at in 1998/99 the government of Ontario spent 94.5 million dollars to 158 agencies to deliver drug and alcohol addiction treatment.
They spent $173 million “ to ensure that the people in Ontario continue to receive HIGH QUALITY
Cancer treatment”. Only 32% of patients requiring cancer treatment were receiving it within the recommended 4 weeks from referral. Also potential conflicts of interest needed to be resolved prior to “ awarding contracts.” The goal by March 31, 2000 was to have 50% of cases moving from referral to treatment within four weeks and 90% within eight weeks.
Time is also crucial to the child with autism. Best outcomes have been reported with therapy starting between the ages of two and three. Until the age of five the brain remains “ plastic” or malleable. I am sure you have seen the government sponsored commercials where they say the first five years lasts the rest of a child’s life and how much they learn in those first five crucial forming years. Autism is as ravaging as cancer yet our children wait on lists from 6 months to a over a year long just to see a specialist, stealing precious time away from them and their families. What message does this send. We will spend lots of money to make a commercial about how crucial the first five years are to children and we will do NOTHING to improve referral time waits for the most vulnerable children in this province. This is unacceptable. It is my direct recommendation that all doctors be mailed out a copy of the CHAT list effective immediately and that they are instructed to tell ALL parents about this MEDICAL TREATMENT UPON
Diagnosis. That an emergency 1-800 number be established in the Province so any child failing the CHAT can be identified and seen within TWO weeks of that finding. To fail to take proper measures to ensure the best possibility outcomes for these children is simply further negligent.
In fact the Government of Ontario awarded the Ontario farmers , after the 1998 ice storms $100 million dollars for damages, much of the cows perishing in the storm, leaving farmers to have to replace livestock. So lets see, it would take 5 years at $19 million dollars for autistic children to have the same worth as a cow.
The “ proposed” funding ( the budget is not passed yet ) also has its limits. They are only funding children from 2-5. They stated that this funding was only applicable to a diagnosis of “ autism” and not too include PDD which is almost always now the initial diagnosis given by the doctors, almost like they loathe to see the “ A” word. My son’s initial diagnosis was/is PDD , but on the diaper subsidy it says autism…so which is he PDD or autism. The point is that it doesn’t matter the name you put on it, it in-itself is the same disorder, with one name being more consumer friendly. Shakespeare said it best I believe “ a rose by any other name would still be a rose” but yet if they take his original diagnosis of PDD they will destroy this child.
At a recent meeting that took place in Toronto , Ontario held by the Ministry for Integrated Children’s services shocking statements were made ( as the one above ) to a room full of people from all across Ontario. Presidents of the Autism Societies were there, some families who are currently doing home based ABA programs were there as well as educators.
Our worst fears were confirmed. The proposed money was to be held out for “ biding “ by existing agencies. The reason for our concern? The existing autism industry originally developed in a treatment-free environment. Consultation the industry provides under government contract does not does include Effective Lovass treatment, but rather is support based and operates in an environment where no objective standards exist to measure improvement of autistic children in costly government programs. The status quo assumes that autism is untreatable so government support services have no outcome criteria. The industry’s personal lack the qualifications to design and administer autism treatment programs. Therefore, private agencies under government contract for autism support services do not advocate for the implementation of TREATMENT for autistic children since they would need to “ retool” to deliver the TREATMENT. In the existing autism industry, where there are no expectations for improvement in the autistic child, there is an incentive to maintain the status quo and protect government contracts.
The Ministry of Health funds the services of speech pathologists. The current speech pathology staff is not trained in Lovass autism TREATMENT and is ineffective in the treatment of autism spectrum disorders.
There does exist in Ontario a ‘ group’ of speech pathologists who are trained. They have worked with autistic children , incorporated into the child’s home program/ and or possible day care placement. One such person is Tracie Lindbland of the Oakville Child Development Center in Oakville Ontario. She has been treating my son for severe apraxia and autism for four months. Eight weeks ago my son could not put two sounds together…he now can speak in two, three , four , five , six + word sentences…but it took a highly trained and qualified speech pathologist who is ABA supportive and trained therapists to consult and identify problems so my trained therapists could implement professional TREATMENT strategies by our non funded speech pathologist. We must currently pay out of our pocket to get the best speech help we can for our son, one of the most serious of the disorders conditions. We only wish we could afford to see her more. One speech pathologist at the Rotary Center in Waterloo, dropped her books to the counter after I told her what target sounds we were working on. She informed me in a very stern voice in front of my son that “ that is NOT how you teach an autistic child how to speak”, when in fact that is EXACTLY how Luke finally learned how to speak. Suddenly they will be in a position to bid for this money. How can this government expect us to believe that current workers will suddenly adopt a new and loving attitude towards ABA when occurrences like this happen on a regular basis with parents running home programs.
Lovass autism Treatment has not been widely accessible until recently, although many in the psychiatric community have been supportive of this TREATMENT method for years. In addition, there is a severe lack of knowledge in government, amongst most educators and the public regarding the efficacy of this TREATMENT. Even the Autism Society of Ontario until recently did not inform all members of ABA , and in fact Mr. Williams a paid employee of the Autism Society who attended the meeting in Toronto , allegedly ( I say this because we do not have her statement in writing yet ). Said to a mother from Thunder Bay – he had no intention of informing parents of a therapy that is not funded by the government. So I asked him at the end of the meeting if he would make sure that his members and presidents inform new families of ABA and to STOP discouraging families from it. He never did give me a response.
The Autism society until quite recently did not advocate for ABA and were ignorant regarding the legitimacy of this TREATMENT. This unfortunately is also true of many autism professionals. Their knowledge of the method, if any , is often limited to outdated work done by Lovass in the early 1970’s when this research project was in its infancy. The effectiveness of modern autism TREATMENT for children remains largely unrecognised. However, parents of children with autism are highly motivated to find and implement the only method that works. Currently there are well over 50 families in Ontario doing ABA programs. Unfortunately, this is only possible for those who can afford the expense or can borrow heavily.
We were told that anyone may bid on the money including the hospital that diagnosed my son and felt that his diagnosis was so unimportant that they failed to inform me for 78 days that my child, had indeed been put into the P.D.D. file. I finally phoned when I noticed something at the bottom of one of his Assessments by hospital staff. I told them that if I didn’t get a written diagnosis within an hour I was going to the OMA. The diagnosing doctor contacted me within the hour.
Two and a half months out of those ‘government sponsored commercials about how crucial the first five years of life is’ didn’t matter because they didn’t believe time was crucial for an ‘ untreatable’ disorder.
They will be eligible to bid for this money.
Places like the Geneva Center in Toronto Ontario, whose ABA commitment has been substantially low in comparison to non recommended therapies by the New York State Report. Which states that the only therapy the State of New York will and can recommend is ABA. It was discussed at this meeting that Marg Whalen of the Geneva Center said she was against discrete trial teaching , which is crucial early on in treatment.
I feel this should be based on the medical model. That the parent have the right to choose the TREATMENT provider as we can our doctors. Good doctors are too full to take more patients but bad ones…..
Right now most of the expertise in this field comes from the United States. There are some people who are highly trained people currently in this province who can deliver this treatment. But to assure the “ highest “ quality , the same “ highest “ quality of care the Province is committed to giving the Cancer Patients we must assure families access to the BEST possible TREATMENT and if that EXPERISE should lay outside the Country there is a duty and responsibility in providing the same “ quality of treatment” as you afford other Canadians.
Susan Seaby even said at the meeting to a parent who runs a high quality program – your son may get the Cadillac version of ABA but not all of them are going to have that. She told us that they could do it for much less. Can you imagine a doctor standing in front of a mother whose child is dying of leukaemia , handing her over a bag of chemo therapy and saying “ here ya go, its not our best batch , so your child won’t live but you will have more time with him”. NO! That conversation would not take place in this Province. But yet it did about autistic children, just put into different words.
We only pray now that our worst fears will not come true. That Mr. Harris will at the very least honour his commitment to allow for American Expertise until we can offer the same level of quality across the entire province.
It has been rumoured that Mr. Harris does not want to the money to leave the province. I certainly hope this is only rumour, the results would be devastating to the quality of ABA in Ontario.
Centers such as New Haven Learning Center in Toronto who are clearly committed and have been for some time to the highest quality of ABA still remain unfunded, having to rely on massive fundraising campaigns from the private and public sector. The proposed Autism Learning Center for Children with Autism which mandates is two fold to offer high quality ABA and training for therapists will have to bid against agencies that simply do not have the resource. But Mrs. Seaby said it must be “ fair”. I would ask her “ fair” to who? Don’t we ultimately have a responsibility to these children and not to government contract?
To add further injury to insult the funding age is insufficient. Those families who sat before these people when their children were two , three , four are now being denied funding once again.
Many families have lost homes, their life savings, their RRSP’s , their cars they have been doing it for years in this province. We do indeed have children walking around Ontario who once were diagnosed as autistic and now are indistinguishable. This is a fact. Some may never recover financially if restitution is not made. The suffering we have experienced is unimaginable to most families. They knew for years….and if they had acted back when they first found out and implemented a PROVINCE WIDE EARLY INTERVENTION PROGRAM FOR 0-18 year olds , I would not be sitting here making this statement to the media.
And now I was informed that there is nothing they can do to help me by Susan Seaby and that I must wait for the money until the biding process is complete. Until the contracts are assigned, and until the agencies are ready to look at ‘ specialised funding’. Lucas Burrows can NOT wait. He should not have to be penalised by this government’s former negligence. He should not have to pay with his life for what these people have done to these children by failing to act in an URGENT manner.
If you were a parent of a newly diagnosed autistic child , wouldn’t you at least want the right too choose?
That was taken away from families all across this Province.
I believe that hospitals like McMaster and Sick kids should indeed continue to be funded in research into finding a ‘ biological cure’ for autism one day. I look forward to the day when ABA is no longer needed for the TREATMENT of autism., but until that day comes I want my son to have the same rights as the child with leukaemia, the child with HIV, I want the MOST EFFECTIVE MEDICAL TREATMENT THAT IS CURRENTLY AVAILABLE for my son.
Perhaps reminding Mr. Harris that it was in fact Luke’s great grandfather that was one of the founding fathers of O.H.I.P along with Premier Robarts. Perhaps he doesn’t know that Leo Whitney former mayor of Waterloo, Queen’s Council, Large Financial contributor to the Progressive Conservative Party, and to the Roman Catholic Church with an on going relationship with the Vatican, and whose other contributions to this country and this province may be found in the book titled “ whose who in Canada” great grandson has had every door slammed on his face by his government.
I would ask the Premier to take note of the large statue on the lawn of Queen’s Park bearing the Whitney name. The sixth Premier of the province who was also noted for his significant contributions to the Health Care System in Ontario. One of the government buildings in Toronto is called the “ Whitney block” . My family help build this Province and now they will toss aside this child when he needs their help the most. A Victim of red tape.

Litigation has begun in the Province of Ontario against the Government. There are many cases with different firms representing plaintiffs. We want to ensure that ALL children with autism are entitled to equal access to effective medical treatment. It is such a crime that these children will be dragged through the courts, more precious time stolen, futures denied. A travesty has happened and it must be corrected.
For those children who can not yet speak , we will be your voice. Your cries will not go unheard.
Tonight while putting my son to bed, he said I love you two mom….after I kissed him on the forehead and you can’t put a price on that.
The Ontario Government may try to hide behind comments such as “ well its not funded in all the provinces is it”, no it is not, but many are and what you need to know is the others are taking their provincial governments to court too.
Don’t we boast as being one of the best Provinces. Aren’t we trying to solicit outside business. Come to Ontario where we treat autistic children with less concern then cows.
These were and are children. Children.
Today I have a child who is a contributing member of this family. Who reads, spells, plays appropriately, can count, knows his ABC’s, understands emotions, has almost age appropriate receptive language among a long list of his courageous accomplishments. I have a child who was silent, that now speaks in sentences. I have a child who has defied all odds. Who will never see the inside of a group home or institution but rather will walk the halls of his preferred college or university. I would sacrifice everything again, and so would the other hundreds of families , who against overwhelming obstacles have claimed their children back from the grips of autism.
May G-d have mercy on their souls for what they have done/ and continue to do to the autistic children of Ontario. I don’t know how they sleep at night.
ps . some of the above was borrowed from FEAT with permission.

[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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