[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

[Super Dad]

I have a dumb question about the James Cusek case: how much of an impact is it likely to make, when there is already an Auton case in the Supreme Court?

[Isaac]

Autism in the news:

To get the latest stories, please visit http://www.featbc.org/the_media/

1) Click on TV news for the recent BCTV story on the new autism lawsuit against the BC education system.

2) For the National Post commentary on a dad's protest in front of the First Minister's health conference, click on newspapers.

[Isaac]

This article appeared on the Editorial page of today's Ottawa Citizen and has been kindly forwarded to us by Andrew Kavchak.

__________________________________________________________
It's crucial for autistic children to get help immediately

The Ottawa Citizen
Sep 7, 2004
Page: A12
Section: News
Edition: Final
Byline: David Ljunggren

At first glance, there seems nothing unusual about the three-year-old boy as he bounces up and down on a small trampoline at home, his eyes glued to the television. But there is something terribly wrong with this picture. Little Steven Kavchak has autism, a serious mental disorder that affects one in 200 children and locks sufferers into their own worlds, unable to communicate, show emotion or cope with everyday life. Although there is no cure, evidence shows that autistic children can be helped greatly by intense behavioural therapy, especially at the age of two to five, when the brain is still growing and can — putting it simply — be rewired to work better. The therapy costs at least $40,000 a year, but Ontario's funds are limited and the list of those in need is long. Steven has been waiting for treatment for nine months.

"This therapy needs to be administered to a child immediately following a diagnosis. Every week, month and year on a waiting list is a tragic loss," said Steven's father Andrew, appalled the health-care system is letting him down when he needs it most. The good news is that Steven has been getting 30 hours a week of therapy from specialists since January. The bad news is that the Kavchaks are paying and money is running out. If the treatment stops, Steven's chances of attending regular school are remote. This story could be even gloomier, since Ontario at least provides some funds for therapy. Parents seeking support elsewhere have been forced to sue provincial governments, some of which claim the treatment is educational rather than medical and does not qualify for funding. Others say the therapy is ineffective, an approach that Kavchak dismisses as ludicrous.

"Say hello to our guest," he called out as we entered the room. "Hello," replied Steven cheerfully, continuing to bounce as he watched television. "That's good — he wouldn't have been able to say that a few months ago," beamed Kavchak, citing studies that show 50 per cent of autistic children who undergo early therapy can attend school without needing further help. Effectively treating children with disabilities so they can go to school and survive without being teased or falling behind is critical, says Pam FitzGerald, chair of the Ottawa-Carleton Assembl of School Councils. "Politics is a short-term game. There is little incentive to put into place expensive programs for children at a young age. But if you spend some money now, you save a lot later," she says, noting that children receiving early help are less likely to end up in jail or on long-term welfare. FitzGerald says everyone benefits because the more help affected children receive, the less likely they are to cause disruptions in class. There are also financial reasons to do more. A study in 2002 said the cost of providing therapy to all autistic children in Ontari would be $2.8 billion over their lifetimes while giving no therapy and then paying their welfare expenses would total $11.2 billion. "What further arguments does one need to realize that eliminating waiting lists is not only the moral thing to do, but also in our economic interests?" said Kavchak. Help could be at hand. In March, Ontario's Children and Youth Services Minister Marie Bountrogianni unveiled a plan to help autism sufferers. "We recognize the need to provide more services to more children," said her spokesman, Andrew Weir, adding that Ontario would this year double autism funding to around $80 million and planned to cut waiting lists by hiring more therapists.

This is of little immediate consolation to Kavchak, who spends most lunch hours protesting on Parliament Hill, each time updating his placard with the number of days Steven has spent on the waiting list. Often he walks alone, awash in grim thoughts. "The impact of autism on families is an absolute disaster," he said, adding that up to 70 per cent of families where a child has a disability eventually break up. Kavchak, who worries that he and his wife are not paying enough attention to Steven's five-year-old brother, plans to demonstrate next week outside the Ottawa building where Prime Minister Paul Martin and the provincial premiers will hold their health care summit.

"I used to be a proud Canadian. I used to believe politicians when they said health care was the No. 1 priority and that our medicare system made us so superior to the United States. My family has now found out the hard way just what a horribly dysfunctional and non-responsive system we have," he said

David Ljunggren is the Reuters national political correspondent in Ottawa.

E-mail: davidljunggren@yahoo.ca

[Sabrina Freeman]

THIS POST IS IMPORTANT FOR ANYONE RECEIVING INDIVIDUALIZED AUTISM TREATMENT FUNDING

———————————————————————————–

Hello FEAT-BC!

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

And onto the main point of my post:

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

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

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

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

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

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

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

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

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

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

[Isaac]

'Autism … A voice from Parliament Hill.'

The September article in 'Access Now' can be downloaded at this address –> https://featbc.org/downloads/access_now_09_04.pdf

Isaac (Miki's Dad)

[Debra Antifaev]

Fabulous letter and idea, Andrew. As much as I loathe the idea of yet another piece of corrospondence I will do my best to follow your lead.
My point of emphasis will be that we require only the science-based, ABA protocol that Dr. Lovaas developed….not any of the programs currently being offerd by the BC Government in BC and in the schools right now.
Please remember the words of Dr. Richard Foxx about it being our DUTY to refuse fraudulent, unproven programs before they get a foothold in our schools and communities and are impossible to remove.
I have just received a letter from a speech path in Surrey annoyed at my refusing an unproven school program. I firmly believe that this program will not benefit my severely disabled son and that I am within my rights to refuse it. I will not accept anything less than the best for my son….to me it is like treating cancer with asprin…it won't work (it could even harm him) and I cannot afford to waste my son's precious time on another experiment by the people in Government programs so desperate to hold onto their jobs.
I am very, very tired of asking civil servants, service providers, MLAs and MPs to do the right thing.
…but, I will continue…polite…but adamant…that my son deserves what all other "normal" children have…..PROVEN medically necessary treatment for his medical condition.
Have a great day everyone!

Deb
Ben's Mom

[Andrew Kavchak]

Hi Folks,
Its your man on the Hill again (the Parliament Hill protester in Ottawa). Yesterday on the National CBC news Peter Mansbridge invited Canadians to submit their health stories to CBC at "national@cbc.ca" so they can do a story before the next Premiers' healthcare summit next month. Please considered bombarding them with your concerns about autism and the irresponsible opposition to the Auton court case. Below is what I sent them this morning.
Thank you.
Andrew Kavchak

Hello,

On last night's National news Mr. Mansbridge invited Canadians to submit issues relating to healthcare for discussion prior to the Premiers'
healthcare conference with the Prime Minister in September. I have an issue that I would like to raise with you and hope that you will do a
story on this.

My three year old son, Steven, was diagnosed at the Children's Hospital of Eastern Ontario (CHEO) last December 8, 2003 as suffering from autism. It
has been now 261 days since then and we are on waiting lists. We have not received either one cent's worth of medically necessary therapy treatment or financial assistance so far. The situation is shocking and tragic because it is the same story for autistic children across Canada. The weakest and most vulnerable sector of our society, disabled children, are very poorly dealt with by health authorities.

Autism affects one in 200 kids. It is a pervasive developmental disorder that results in an inability to communicate (non-verbal), poor social
interaction, and behavioural problems. Autistic kids appear to be in their own world. In the past they were written off as being retarded and
institutionalized for being hopeless cases. Although the cause and cure for autism are not yet known, the best treatment has been known since the 1980s. Medical studies have shown that the intense application of Applied Behaviour Analysis (ABA) therapy treatment using the protocol developed by Dr. Ivar Lovaas at UCLA in the 1980s results in 47% of autistic children
developing to such an extent that they can function at the average level and enter school without any need for special supervision. This is what every parent of an autistic child dreams of! The rest of the children make huge gains in their development. But do you think it is easy to get this treatment? Not in Canada!

In our case the province of Ontario created a "Preschool Autism Program" a few years ago but does not fund it enough. As a result there are over 1,000 kids on waiting lists. We applied the day after our son's diagnosis and are still on a waiting list. They have lists for the therapy treatment and for the alternative "direct funding" to pay for it from the private
sector. We are on the waiting lists for both. We were told that the medical science suggests that it is important to do the therapy right away
upon diagnosis because the child's brain is still growing and there is the best opportunity to achieve results when the child is young. So we
resorted to the private sector (the so-called "second tier" that is not supposed to exist according to our national Minister of Health). We resorted to it by necessity, not choice. The result? We have costs of
about $50,000 a year to face. My wife and I don't earn enough to cover the costs and are depleting all our resources. We applied for some financial assistance to the province's "Special Services at Home Program" and were told that we qualify. Other similar families have received between $5,000 – $8,000 a year in the past. Well, it turns out that we have been on a
waiting list for that since December 2003 as well.

Across this country, from Newfoundland to BC, parents have had to sue their provincial governments to get therapy treatment for their autistic children either provided for or paid for by provincial governments. Many parents have filed Human Rights Commission complaints. I am not aware of any court case where the parents lost. In each case the courts have found
ABA treatment for autism to be "medically necessary" and ordered governments to supply it or pay (it is discrimination if they don't). So
why do parents who are already psychologically exhausted from having a disabled child, financial strapped and facing bankruptcy, also have to go to court as a last resort to get medicare in this country for their child?
It is interesting to note that in BC several years ago a group of about 30 families got together and started the AUTON class action lawsuit against the provincial government. They won at the BC Supreme Court. But instead
of paying for therapy treatment, the government appealed to the BC Court of Appeal. The government lost again! Instead of doing the honourable, moral and legal thing, they refused to comply with the order to pay and
appealed to the Supreme Court of Canada. The AUTON case was heard by the Supreme Court of Canada on June 9, 2004. Every provincial government and the federal government intervened against the kids. What a shame and a
scandal. On top of it all, the current federal Justice Minister, Irwin Cotler, who has a "human rights" reputation, did not call off his lawyers.
Similarly, the current federal Health Minister, Ujjal Dosanjh, was the former BC Premier who could have stopped the AUTON litigation but instead pursued it. And now he portrays himself as the defender of medicare and is opposed to the private sector's intrusion. What a scandal!

As a result of this situation and my own family's difficulties, I have been protesting on Parliament Hill every day since March during my lunch hour from 12 noon to 1 pm with a sign that says "Kids With Autism Need Healthcare Not Waiting Lists". I apply for monthly permits and try to speak to politicians who walk by. I also educate the public and try to raise awareness of this problem. Attached is a photo of my protest and my sign. Also attached is an article that I wrote for a disabled person's newspaper called "Access Now". It is self-explanatory.

I already applied to Ottawa City Hall for a permit to protest on the sidewalk in front of the Conference Centre during the healthcare
conference. I will be there. Please feel free to contact me if you would like to do a story on this. I have lots more that I could tell and know of other interesting parents
with the same problems.

Thank you.

Andrew Kavchak

[Isaac]

Passing along today’s news from Ontario … yet another successful court injunction to enforce government funding for medically necessary behavioural autism treatment beyond the arbitrary government age six cut-off.

Isaac
(Miki's Dad)

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Important autism ruling
Judge supports boy despite age cap
Ruling may open doors for others

CHRISTIAN COTRONEO
TORONTO STAR STAFF REPORTER

An Ontario court is ordering the government to pay for a 7-year-old autistic boy's treatment, in a decision that may widen the door for hundreds more cases.

Eric Naccarato would suffer "irreparable harm" if he left the government-funded Intensive Early Intervention Program, or IEIP, even though he exceeds the program's six-year age cap, Mr. Justice Paul Rouleau ruled.

When the Hamilton boy turned 6 in July of last year, the Ontario government stopped paying for his therapy. To keep him in the program, his parents took over the payments. They eventually had to scale back his time at the center to three days, and enroll him in a special public school program for the remaining time.

But the boy's treatment, called applied behaviour analysis, requires intense, one-on-one sessions in which behaviour, language and social skills are constantly being reinforced. Eric's parents told the court his behaviour was beginning to unravel in a normal school setting. The costs – from $45,000 to $80,000 per year – on the other hand, prevented them from keeping him in therapy.

Lawyers representing the attorney-general argued that by keeping Eric in one of the program's 500 spots, another younger child who could benefit even more from the treatment would be denied.

The court has ordered the government to ignore the IEIP's age limit on a handful of occasions in recent years and the numbers are certain to grow.

"Not one of the children that's applied in this province, that was formally part of the IEIP has been turned down," said Norrah Whitney, whose son was granted an injunction last year.

In addition, she said the Ontario Human Rights Commission is hearing an estimated 160 families, seeking similar measures.

But Rouleau maintained that Eric's case is too unique to affect many other families.

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[FEAT BC Admin]

An Ottawa area dad shares his thoughts with us …
________________________________________________

I have been protesting on Parliament Hill every weekday at lunchtime with a sign that says "Kids with Autism need Healthcare Not Waiting Lists." I have been protesting for the past four months. My son has been on waiting lists since he was diagnosed in December.

Anyway, a person in a motorized wheelchair approached me a while ago and indicated that he was the publisher of a newspaper for disabled persons "Disabled and Proud/Access Now". He invited me to submit an article. Attached is the article that is published in the current edition that just came out.

************************************************

Access Now: August 2004 Vol 3 No 4

Autism….A voice from Parliament Hill

lack of Healthcare Services for Children with Autism

I used to be a proud Canadian. I loved this country and believed that we were a caring, compassionate society. I used to believe politicians when they said that healthcare was the number one priority, which made us so superior to the U.S.A. because we had a "universal medicare" system and they did not. Well, all that changed when my youngest son was diagnosed in December 2003 at CHEO with Autism.

For the past four months I have been protesting on Parliament Hill every day during my lunch hour with a sign that says "Kids with AUTISM need Healthcare not Waiting Lists". I have learned a lot about autism since December. I have also learned a lot about the nonresponsiveness, dysfunction and discrimination in the healthcare system. I am no longer the proud Canadian that I once was.

Autism is a pervasive development disorder that affects approximately one in 200 kids. For a variety of reasons that no one is quite sure about, the prevalence rates are rising and were recently quoted in an American medical journal as 1/16! Children who are diagnosed with autism have difficulty communicating, interacting with others, and have corresponding behavioural problems. Many seem to live in their own worlds. There is no known cause, and therefore no known cure.

But there is hope! Since the 1980s, medical researchers have known that when a child is diagnosed with autism, the application of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI therapy can have a dramatic effect on a child's development. When a child is diagnosed, usually at the age of three, there is a window of opportunity to apply the therapy on an intensive basis (up to 40 hours a week) for two to three years. When this is done, studies show that half of the children develop to such an extent that they can enter the school system and function at an average level with no special assistance. The rest of the children make significant development. Without the therapy, the children would be doomed to the tragedy of a life in another world and possible institutionalization.

For a parent of a child with autism, getting the therapy for the child is the most important thing in the world. I thought it would be straightforward here. After all, we have universal healthcare, right? Think again! The Ontario government instituted a "Preschool Autism Program" several years ago but they do not provide it enough funds to do its job. Currently, 500 kids are receiving the therapy and there are over 1,100 on waiting lists. My son is one of them. We were told that it could be a year or even more before our son would get government supplied therapy. But we were also told that we couldn't wait! The best chances of development occur when the therapy is given right away to a young child. To wait and give it later will not bring the same results. You have to do it while their brains are still growing and before the bad behaviours become entrenched.

So my family has done what many others in similar circumstances have had to do. We went to the private sector and hired the specialists to administer the therapy to our son. It is not easy to find the right people. And what is the cost? About $45,000 a year! We applied to the "Special Services at home" Program of the Ministry of Community and Social Services for at least some financial assistance. Guess what? We are on a waiting list there too! And we have no idea when we will get any assistance, if at all. In the meantime, we are facing incredible financial hardship that is unsustainable in the long run.

The Federal government keeps talking about transfer to the provinces of billions of dollars to reduce healthcare waiting lists. The McGuinty government just announced a new "healthcare premium" to do the same. But the provinces do not consider the provisions of ABA/IBI therapy to autistic children to be healthcare. The billions of healthcare dollars flying around don't get shared with autism programs which are dealt with under separate budgets.

Across Canada, from Newfoundland to B.C., parents of autistic children have had to sue governments and file complaints with the Human Rights Commissions to get the government to realize that not providing scientifically based healthcare services to autistic children is discrimination. That is what it has come to in this country. The parents of the weakest and most vulnerable members of our society, disabled children, have to sue to get healthcare!

But parents have been winning their cases across the country. On June 9, 2004, the Supreme Court of Canada (SCC) heard the famous "Auton family case"
from B.C. Even though the BC Supreme Court ordered the provincial government to supply the therapy services, the government appealed to the SCC and every province and federal government intervened against the children. Shame! What are their arguments? That ABA/IBI is not proven to work? But it does! That the courts should not tell the government how to spend money? Where else is a victim of healthcare discrimination supposed to go? The courts are a solution to government non responsiveness. They also claim it is too expensive. But not doing anything to try to help autistic children is even more expensive! Their arguments are just plain wrong. The governments think our choice should be institutionalization or financial ruin. No thanks!

I hope the judges will have wisdom to see that the discrimination against kids with autism has to stop. Until it does, I will continue my protest on Parliament Hill. Feel free to come and join me.

Andrew Kavchak

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[Deleted User]

someone sent this to me and they are the interpretations and accounts of Lisa Simmermom of the Autism Society of Canada

the poster nor FEATBC are responsible for the accuracy of content.

Summary of the Auton Case Hearing before the Supreme Court of Canada

June 9, 2004

Autism Society Canada

Representatives in attendance: Lisa Simmermon, President; Jo-Lynn Fenton, Vice-President; Louise Fleming, Executive Director

Summary provided by Lisa Simmermon June 11, 2004

The Auton case from British Columbia was heard by the Supreme Court of Canada on June 9, 2004 in Ottawa. Participating were the original parties of the case (the Auton families and the Attorney General of BC), the Canadian and many provincial Attorney Generals as interveners (ON, QB, NS, PE, AB, NF), lawyers for a number of interveners supporting the Auton families (LEAF/DAWN, ASC, CACL/CCD, FEAT ON/AB, FOCA) and the lawyer for an intervener who supported neither party: Michelle Dawson. Attendees that filled the entire available spectator seating that were recognized included representatives from the Auton families and the related Anderson case families from BC, and representatives of the record 29 filing interveners. Supporting the families, this included representatives from Autism Society Canada, Friends of Children with Autism (involved in the Ontario suits), and FEAT Ontario. Michelle Dawson was also in attendance. Several families brought their children with an Autism Spectrum Disorder.

The Attorney General from BC began the day and asserted that discrimination had not occurred related to the Auton case, that there was no human rights dimension in this case, and that the case could not be considered a constitutional question as health care is not a right under the constitution. He indicated there was a terrific risk if the judicial process takes over health care, and that health care should be determined by the government. As well, he asserted that this was not a case about basic needs, so Section 7 of the Charter (legal rights) was not applicable. An argument was put forward that since autism treatment professionals are not physicians, they are in the category of other health care practitioners who are currently funded only partially by insured medical services in BC. The AGBC indicated that the decision, at most, should only be to fund ABA therapists on a partial basis, and that if families are not satisfied, they could pursue further legal actions.

The various federal and provincial Attorney Generals continued. They echoed many of the points of the AGBC. The AG of Canada summarized this by saying that the system has never provided for everything to be covered, only that everyone should have some coverage for health issues. ABA is not a treatment, but an educational service, which he said supported the opinion that ABA is a service outside the healthcare system. South African judges, he noted, had refused to review a health services case because it was about the issue of allocation of scarce resources of health care. He indicated that if the claim of discrimination is upheld, that the remedy should only be a declaration. Ontario’s AG agreed there was no discrimination, and argued that the Canada Health Act was not applicable since this was not a medically necessary hospital or physician service. He argued that IBI is not a medical intervention and is not provided by health professionals, and indicated that healthcare should not be managed on a case by case basis. Quebec’s AG followed a similar path, arguing that autism treatment is not necessarily medical. Nova Scotia’s AG spoke about how courts do not weigh budgetary evidence in making such decision, and that when issues of indeterminate liability exist (as in the case of providing treatment to children with ASD), governments need protection. She argued that such a situation allows for people to have the treatment of their choice without assurance that such treatment is on the legislative agenda. Emphasis was placed on courts not having expertise in autism treatment, and that this subject requires coordination across health care and education and is only appropriately done by governments. The issue of competing interests was raised by the PEI AG as he noted that this case raised issues of detraction of services of an education or social services nature into the medical field, and that there is a need to have a balance of needs of disabled children addressed. Alberta’s AG noted that autism treatment is funded through a ministry other than his province’s department of health, and that decisions should not be made by courts directing provinces to provide autism treatment through specific ministries. He also asked should there be a basis to force funding for a treatment which does not take government issues into account. The UN convention of the Child, he noted, has no legal force in this case as it indicates that addressing needs is dependant on resources. Several questions were posed by the NF A, including what is the appropriate role of the court regarding the future and maintenance of the health care system, whether wait lists pose constitutional questions and should government fund all services, but inadequately, and whether these are appropriate for the legislature or judiciary to determine. He noted that there is a broad range of medically necessary treatment not covered by health funding. As well, he (like other AG’s) raised issues about the comparative groups in the Auton case. He concluded that use of such comparative groups led to the probability of many claims of discrimination, which raised the importance of governments using Section 1 of the Charter (reasonable limits) to maintain control over resources.

Chris Hinkson represented the Auton families, and he began by reminding the Court that when the case was initiated, it named the ministries of Education and Children’s Services originally in addition to the ministry of Health and the Medical Services Commission, and that the trial judge had ruled that the issue was only one of healthcare, and that the AG had not appealed that finding. He reviewed the case history briefly, and noted that, during the trial, the BC government did not arguer regarding the cost of the treatment, but rather that ABA/IBI treatment is ineffective, which perpetuated stereotypes and was discrimination in that it asserted that children would not benefit. No cost-benefit analysis was provided by the BC government during the trial. He continued to review the history of the case, noting how the government of BC has shown very negative conduct, and reminding the court that this negative conduct was noted by the trial and appeal judges. The inclusion of advice by medical professionals for treatment as long as it is deemed to be helpful was raised. Mr. Hinkson noted that there had not been a transparent process for resource allocation, and that lack of such a process involved discrimination. He also noted that Autism Society Canada would be addressing the issue of lack of transparent process for resource allocation across Canada regarding decisions pertaining to autism treatment. The fact that decisions about treatment funding are made by bureaucrats in BC with no expertise in autism was raised. He pointed out that this case is about addressing a specific issue as opposed to re-writing medical care policy, and that the remedy provided by the Court for this case needs to address the intransigencies and improve the process involved. With regard to published cost-benefit analysis information, he pointed out that this was not appealing to governments to spend in order to save money later, so any Section 1 (reasonable needs) analysis needs to include the total cost picture of a situation, and not just the cost of treatment. He noted that the BC government’s claim that ABA/IBI is a very recent experimental and controversial treatment is invalidated by the statement of the US Surgeon General that it has been around for more than three decades. He indicated that courts indeed have legal jurisdiction with regard to the issues at hand, and that doctors should be involved in treatment provision decisions, and not bureaucrats. With regard to issues pertaining to resource allocation in an article by Greschner and Lewis (Auton and Evidence-Based Decision-Making: Medicare in the Courts, The Canadian Bar Review, 2003) that had been cited by a number of AG’s, Mr. Hinkson concluded that they would be addressed more fully by Feat Ontario.

The Women’s Legal Education and Action Fund (LEAF) & the DisAbled Women’s Network Canada (DAWN) presented an interesting point that the most important distinction for the Court to consider was abled and disabled. It was pointed out that the medicare system is designed for and mostly meets the needs of the able-bodied population. Thus, for competitive groups in the determination of discrimination, the issue is proportionality: children without autism have most of their health care needs met, while children with autism do not have most of their health care needs met. Discrimination involves situation where there is privileging of the norm. Caution was expressed that the Court should not get caught in community prejudice such as autism creating prejudice against people with disabilities in general. It was noted that the lower courts did not include the perspective of people with autism. Their conclusion noted that the approach required in order to avoid inequality is the application of equality rights principles including: responding to differential needs, commitment to non-pathologizing of difference, consultation and option consideration in good faith that includes the inclusion of adult people with autism, commitment to non-violent and non-coercive programs and governments committing financial and other resources in an equitable way.

Autism Society Canada‘s lawyer Domenic Crolla indicated ASC’s support for the Auton families, and noted that the core medical need of children with autism is treatment. He said there is a need for government to show it has used a process to not fund a treatment, and that little had been revealed about the BC decision-making process regarding autism treatment, and that the process is similarly not clear across Canada with unexplained criteria. The need for transparency, accountability and clear communication was emphasized. Procedural issue is not to be discharged; it must be a constitutionally appropriate process. Therefore Section 1 issues can not be arbitrary and must be non-discriminatory. Unless it can be proven to be true, and include transparency, accountability and clear communication, the Court should not allow governments to say that they have an acceptable decision-making process.

The lawyer for the Canadian Association for Community Living and the Council for Canadians with Disabilities indicated that they were gravely concerned about the assertions of the BC government in this case. The Court was asked to respond to the AG’s about resource allocation that governments are accountable for their decisions, and that cost-benefit analysis must be a part of the decision-making process. As well, if it is accepted that there is no true comparator group getting the exact benefit being sought (in order to determine discrimination), this excludes all people with disabilities. Differential treatment must be determined by looking at the group in question, and determining if needs have been met. If courts scrutinize health care, then it is at risk. However, equality must not be compromised, and governments must be accountable for funding resources in all areas of their responsibility, including health, education, and others. Courts should not be responsible for reviewing situations requiring resource allocation, but in a situation where a government does not do a reasonable review of the situation, it is appropriate for a court to be involved. They noted that no treatment was offered to children with autism, and resources were the only reason cited for not providing it. It is apparent that the BC government did not carry out an equality impact assessment. In conclusion, it was stated that it is not appropriate to discuss resources in the context of taking away services from other people with disabilities.

FEAT Ontario noted that this is a case in which the Charter protects the right of the child with autism to access treatment; not protecting that right means that a child’s options are removed, reducing life options. Although healthcare is not constitutionally enshrined, it is referred to by the Court, indicating its importance. Treatment is fundamentally important as it impacts the quality of life, and must be provided in a manner consistent with the law. The Charter compels provinces to provide core medical services which are fundamentally important to a person, which is indicated in the Ontario government’s funding of sex-change operations. The fundamental importance of treatment to children with autism can be shown in the reality that almost all can not benefit equally from a reasonable quality of life until they get treatment. FEAT Alberta supported the comparative groups in the lower court cases, and noted that such categories of comparative groups had been used in other cases. They indicated that individuals with ASD will be so compromised by lack of treatment they will not be able to benefit from any regular services, and asked that if we send children to school without treatment, which reduces their ability to acquire an education, are we saying we do not value them? They concluded that government’s obligation to treatment does not end at age 6, and noted that Alberta courts also now accept this reality.

Friends of Children with Autism (FOCA) expressed concern that if one accepts the AG’s saying that normal processes are the same for everyone, then a Charter-free zone is not good. They asserted that the Courts and Legislature and Executive branches of government are all the guardians of the Charter. There is Supreme Court of Canada jurisprudence that accommodation of difference is equality, and includes ameliorating groups who have suffered disadvantages in Canadian society. Therefore, if you treat all people the same, and do not accommodate their difference, then that constitutes a disadvantage, and is discrimination. It was noted that the Canada Health Act indicates that its primary object to work to protect, promote and restore Canadians' physical and mental well-being, which includes mental health issues, and that autism treatment should therefore not be on a basis to pay. Also raised was the possibility to designate autism treatment therapists as health care practitioners, and that this is possible by both BC and Canadian law. Courts do need to step in where a government’s process to determine funding is not reasonable. With regard to the issue of efficacy of ABA/IBI past age 6, it was brought to the Court’s attention that the cases before the Ontario courts are addressing this issue, and it does not need to be addressed by the Supreme Court at this time. This case allows the Supreme Court to make decisions and will not deny governments’ future ability to exercise decision-making; the Auton case is about government not fulfilling its responsibility.

Michelle Dawson’s lawyer indicated she is not in support of either party in the case, and is very offended that because she has not sought treatment, she could be seen to be going against her own Section 7 rights (legal rights) by not having her dignity until she pursues treatment. Comparison of this situation was made to language used regarding homosexuals, and it was noted that maybe people with autism do not want to change. Disability is society’s inability to make accommodations, and it was questioned whether efficacious is acceptable in our society. It was disputed as to whether people receiving treatment improve, and whether it mattered if people did not improve. The Court was informed that people with autism do talk and have written books, and that they should not believe that children with autism will only get back their dignity if they receive state-provided treatment. This was likened to First Nations residential schooling and the Court was asked to look at the cost to society of the mistake about how that was handled. Similarly it was suggested that society considered that, unless treated, children with autism are doomed, and are equivalent to cancer, which is deeply offensive to people with autism. Points were raised about Lovaas treatment in 1964 which used coercives, and the Court was asked if we know that we are losing by extinguishing certain abilities, and what a loss this is to our society. He concluded that there is a requirement of people to provide permission to receive treatment.

The counsel for the Auton Families had retained some time from his allotment for presentation to respond to Ms. Dawson’s intervention. He indicated that it has never been said that all people with autism should get ABA/IBI. It is also wrong to say that nobody should get treatment. He noted that Ms. Dawson offered speculation, while he had offered the Court fact, including medical evidence. Families are not advocating for ‘60’s style of ABA; that is not what is recommended by medical professionals and not what is being asked for by parents. He also noted that jurisprudence indicates that parents have the right to make decisions for children, and noted that children with autism rarely have speech before treatment, so communication is a very serious and problematic issue.

The AG BC had an opportunity to provide closing arguments, which included that BC was not dismissive of the requests from families since the BC government had developed an Autism Action Plan including references to a need to balance services to other children. Although this plan was never implemented, the AG asserted that writing it shows that the government did investigate the need for early intervention and met the responsibility of considering the situation. The problem was that the families were not willing to wait for the plan’s implementation, so the government then declined all requests for funding. He concluded that the right of equality is not equal to the right for funding.

The counsel for the Auton families indicated these had all been addressed in his earlier remarks.

The case was concluded at the end of the day on June 9, and the judgment was reserved. Two judges who are retiring did not participate in the hearing, which leaves seven judges to address the case.

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