[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

[Isaac]

Reprinted from the Me-List:

From: Gary Mayerson
Subject: Re: today's Star – B.C. parents lose autism lawsuit

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What a disappointing decision, and one which undoubtedly will have very serious social and economic impact in Canada if legislators there do not wake up. Couple the epidemic like increase in the incidence of autism with ineffective treatment, and essentially you have created the "perfect storm" for lifelong dependency and care, certainly for a significant percentage of these children. Hopefully, Canadian legislators will see this looming threat…..it's either pay now or cry greater fiscal tears later…..Jim Mulick's "cost benefit analysis" should be brought to the attention of every single legislator in Canada to show that even on a purely economic "bean counting" analysis, and wholly apart from the human wreckage, it is fiscal suicide for Canada to proceed this way.

Gary Mayerson

[Isaac]

In its Auton ruling, the Supreme Court of Canada supported provincial arguments that the Health Act doesn't force provinces to pay for all medical treatments. This is the "wiggle" room in the Comprehensiveness clause of the Act. But there is zero wiggle room in the legal interpretation of the "Universality" clause, which says every Canadian has the right to be in Medicare. So how can the Court rule it's okay to keep children with autism out?

At core is their failure to consider one question: what happens in the unique circumstance where there is only one effective treatment for a given medical disorder, as is the case for autism. The answer is surprisingly simple: Universality and Comprehensiveness merge to become one and the same — to exclude the treatment is to exclude the person from Medicare.

The SCC ruled that to do so is not discriminatory because the autism treatment in question is "novel" and "emergent," Yet they go on to say it is, "… the only known, effective therapy for autism" [Par. 59] and that the New York Department of Health and the U.S. Surgeon General view the therapy as the "treatment of choice" [Par. 11].

When the only effective treatment for autism is excluded from Medicare, it's undeniable that children who suffer from the disorder are shut out of health insurance. No amount of sophistry can escape this conclusion. Today, children with autism are officially less equal than Canadians with physical disorders. For them, the Charter of Rights and Freedoms is an empty promise, betrayed by those entrusted with its stewardship.

Isaac Tamir (Michelle Tamir's Dad)
One of the families in the Auton case

[Barbara Rodrigues]

Jenn:

Great letter! Full of truths. Would you mind sending it to our papers up here in the Okanagan

Kelowna Courier – email – Letters@ok.bc.ca and our Penticton paper email – editor@pentictonherald.ca

and lastly The Western -email at editor@pentictonwesternnews.com

Thank you!.

Barbara
Jeremy's Mom

[Jenn Ralph]

me again…my husband just sent me this one too (also sent to all big newspapers):

From: Doug Ralph [mailto:Doug@terra-nova.ca]
Sent: Monday, November 22, 2004 12:21 PM
To: sunletters@png.canwest.com
Subject: Well Done Mr Plant

Mr. Plant:

You did a fine job. I guess congratulations are in order. The problem is I know your dirty little secret. I know how ABA therapy works and how it helps my daughter. I know the discrimination my daughter faces day in and day out. The fact that the Auton case had been skewed and morphed into a constitutional issue where the government could defend itself with technicalities and antiquated definitions is a credit to you and your lawyers. Perhaps the most ironic and skilful thing of all, and just the thing to stick it to us greedy parents already brought to our knees with crushing financial and emotional burdens is that the case in the Supreme Court became an issue of the rights of the government. Go figure. The right of government to spend their dollars the way they want. I thought it was supposed to be the rights of disabled children. Congratulations, Mr Plant. Well done. For you have not only won and protected the rights of the poor downtrodden government, you have muddied the issue sufficiently to deflect attention from the facts and to deflect attention from the plight of the children and the parents trying to care for them.

I applaud how you marginalize this neurological disorder by calling it a learning disability…sort of how you might call a cleft lip a skin condition. Yes, it is true, my daughter learns a little slowly. Not to mention her trouble with talking or playing with peers or recognizing her parents. Thanks to ABA therapy she is improving in all these areas. It is expensive as you have noted and I realize how these skills I have noted seem a little luxurious. Call me selfish. You did a splendid job in defending your government from us money grubbing parents of autistic children. Thank heavens the Court ruled in your favour and that we all were spared from having the floodgates opened with a rash of requests from all sorts of wanting kids with god-knows-what kind of crushing disability; the fact that they would want -let alone expect- that they be looked after does sound a little naïve in retrospect.

Doug Ralph

Richmond, BC

[Jenn Ralph]

THe following is the letter I sent to all the big newspapers today. The Ottawa Citizen called me back to say that my letter had been shortlisted for tomorrow's paper. FYI.

I was stunned, sickened and devastated when the SCC handed down their cowardly ruling on autism funding. They hid behind what seems to be a technicality – that autism is presently-and wrongly-not considered a core medical issue, and succumbed to the unchallenged fear- mongering about fiscal doom-and-gloom of the AG’s. To treat autism as only a learning disability (and not a core medical condition requiring treatment) is akin to saying a cleft lip is a skin problem. If the SCC actually read the previous rulings, which it appears they did not with all of the inaccuracies in their 22 page judgement, they would know that this was the last chance for autistic kids to get the medical treatment they need and rightly deserve as equal citizens in this country. They are the guardians of the Charter, and they failed one of the most vulnerable and disadvantaged groups in this country. Where is the accountability? The province now has free reign to continue with their shameful history of conflicts of interest, lies, broken promises, and systemically influencing education and social services with misinformation and insufficient funding for unproven, useless treatments. It is like “groundhog day”, once again, for parents of autistic children. These children have essentially been stomped on, muddied, and thrown aside. I hope they realize that this decision just ruined any future hopes at productive and happy lives for thousands of deserving, and able if treated, children with autism. I am truly now embarrassed to be Canadian.

Jennifer Ralph, Richmond, BC

[Jenn Ralph]

THe following is the letter I sent to all the big newspapers today. The Ottawa Citizen called me back to say that my letter had been shortlisted for tomorrow's paper. FYI.

I was stunned, sickened and devastated when the SCC handed down their cowardly ruling on autism funding. They hid behind what seems to be a technicality – that autism is presently-and wrongly-not considered a core medical issue, and succumbed to the unchallenged fear- mongering about fiscal doom-and-gloom of the AG’s. To treat autism as only a learning disability (and not a core medical condition requiring treatment) is akin to saying a cleft lip is a skin problem. If the SCC actually read the previous rulings, which it appears they did not with all of the inaccuracies in their 22 page judgement, they would know that this was the last chance for autistic kids to get the medical treatment they need and rightly deserve as equal citizens in this country. They are the guardians of the Charter, and they failed one of the most vulnerable and disadvantaged groups in this country. Where is the accountability? The province now has free reign to continue with their shameful history of conflicts of interest, lies, broken promises, and systemically influencing education and social services with misinformation and insufficient funding for unproven, useless treatments. It is like “groundhog day”, once again, for parents of autistic children. These children have essentially been stomped on, muddied, and thrown aside. I hope they realize that this decision just ruined any future hopes at productive and happy lives for thousands of deserving, and able if treated, children with autism. I am truly now embarrassed to be Canadian.

Jennifer Ralph, Richmond, BC

[Andrew Kavchak]

Hi Folks,
Here in Ottawa I am trying to get the autism petition tabled. I have some good news. Tomorrow morning we will have a media event prior to the tabling of the first batch of petitions. Please see the Press Release from Scott Reid's office below.
Thanks for everything you folks in BC have done!
Andrew

For Immediate Release November 22, 2004

MPS FROM ALL PARTIES TO SHOW SUPPORT FOR FAMILIES OF AUTISTIC CHILDREN

OTTAWA – Tomorrow, November 22, 2004, Scott Reid, Conservative MP for Lanark-Frontenac-Lennox and Addington will table petitions relating to treatments for children with autism.

Mr. Reid became aware of the problems facing the autistic community last spring, when Andrew Kavchak, a concerned father who has been protesting on Parliament Hill on almost a daily basis since March, 2004 asked for his assistance.

Andrew Kavchak has a three year old son, Steven Kavchak, who was diagnosed with autism on December 8, 2003 at CHEO. Although Mr. Kavchak's family immediately applied to Ontario's Preschool Autism Program for the medically necessary autism treatment, he was placed on a waiting list and is still waiting. His family began a private treatment program for their son in January 2004 which costs approximately $50,000 a year.

There will be a short press conference held at 9:45 in the House of Commons Lobby before the petitions are tabled at 10:00 am.

NDP MP Tony Martin will join Mr. Reid in support of families of autistic children. Liberal MP Massimo Pacetti along with several other MPs from all parties are expected to table the same petitions later this week.

-30-

For more information please contact Scott Reid's office at 947-2277.

[Dorothy Ray]

As I read everyone's responses to the Supreme Court decision, I feel emotional and proud. I am a newcomer to the FEAT family, but with two on the spectrum, I've had a fast introduction to the world of autism and ABA. Aside from the petition (which I'm working on) I wonder what I can contribute to the effort to secure our children's futures. I've recently heard discussion that if the government and courts have abandoned children with autism, we must appeal to the public – and soon, before the media spotlight seeks fresher fodder. Could we brainstorm? What kinds of actions attract public attention in positive ways? How can we create an emotional appeal that will convince Joe Public that our kids' futures are important to him in a personal way? How can we encourage him to make some small effort toward our cause? What about welcoming the media into our homes to share our worlds? What about a public display (peaceful of course) of our numbers in front of a government location, or a store to store "ribbon for autism" campaign – anything to keep our issue in the public eye in a positive and emotional way. I'm no spin doctor, but amongst our devoted and talented numbers there must be some brilliant ideas fermenting. The fight is not over yet – just the rules have changed. Let's hear those bubbling ideas and see if we can launch a new campaign toward the public. They may be more sympathetic than those with political axes to grind.

Joining the fray, Dorothy

[Avery Raskin]

I find myself in the rather strange position of having to defend
the NDP, since Cindy has implied that the Liberals were the
lesser of two evils when it comes to our children. Actually, while
neither of the predominant provincial parties has been any
friend to our children, the NDP were at least honest about it. It
was the NDP who told us straight out that it would be a cold day
in hell before they EVER did anything to help our children. And
they were true to their word as long as they were in power —
they never did anything to help our children. The Liberals, on
the other hand, made all kinds of promises and bent over
backwards to be our friends before the election. Ted Nebbeling
brought Jean and Bev and myself to lunch with the members so
they could see us clearly while he tabled our petition in the
house and said he would fight until our kids had equal access to
medical treatment. About a dozen other Liberal MLAs fell all over
themselves making promises to never rest until our kids got
proper access to the medical health system for Lovaas ABA
treatment. And then they were elected and suddenly stopped
taking our calls.

So the truth is we have no friends in the provincial government,
and it remains to be seen if we have any in the federal. Let's not
forget that the new Health minister is none other than our old
five-minute premiere Ujjal, who used to wear the NDP colors
before deciding he wanted to go federal. He was certainly not
our friend when he was Premier and likely won't be now either.

[Alan Campbell]

Justin you are RIGHT. My husband and I have often been accused of having "big mouths"…..well, we can't think of a better time to use them. We have sent off a letter to the new Editor-in-Chief at the Province, we hope he contacts us.
We also worked on the last provincial election with the liberals…hmmmm, wonder where we are going there? Saw Jenny Kwan at the parade today, but the NDP was cruel to our families compared to the current government.
We will stand on any soap box, shout in anyone's ear………we must SAVE our children!
Anything you need us to do, just ask,
Cindy & Alan Campbell
fighting for our daughter Elizabeth and all your children too

[Author]

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