[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

[Karen Anthony]

Thank-you Jason for taking on the email lists (and everything else)!!!

Times-Colonist
Victoria, BC

Mail: Letters to the Editor, Times Colonist, Box 300, Victoria, BC V8W 2N4

Fax: 250-380-5353

E-Mail: letters@tc.canwest.com

“Letters should be no longer than 250 words and may be edited for length, Include your name, address and telephone number. We won’t publish anonymous letters.

Copyright in letters and other materials accepted for publication remains with the author, but the publisher and its licensees may freely reproduce them in print, electronic and other forms.”

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

Victoria News

Fax: (250)-386-2624

E-Mail: vicnews@vinewsgroup.com

“Letters to the editor must be signed and include a telephone number for verification. We reserve the right to edit, condense or reject any contribution. Guest editorials are limited to 700 words.”

[Isaac]

Hi All,

A worthwhile interview today (November 22) on CKNW with Michael Campbell in conversation with Sabrina Freeman regarding the SCC Auton decision.

Fast forward to the 2:36.55 pm segment of the interview (it's about a half hour in total).

http://www.cknw.com/audiovault/audiovault.cfm

Isaac
(Miki's dad)

[Justin Himmelright]

FYI to all letter writers. On Saturday I too sent a Letter to the Editor, framed as an open letter to Gordon Campbell and Geoff Plant. The letter was sent to the Globe and Mail, Vancouver Sun, National Post, and my local rag. The local paper is picking it up (Maple Ridge Times). I also directly contacted the columnists responsible for writting articles on autism in the Globe and at the Post.

I has happy this morning to get a call back from the Post, they seem to intend to publish my letter and some of the contents of my note to the columnist (John Ivison). An important piece of information to remember in your letters is the URL address for the online petition or for FEAT of BC. Find a way to work it in.

Lets save ourselves some effort collectively. Email me (address in this post) as many email addresses for letters to the editor as you can find for local, provincial, and national papers. I will put together a mailing list and get it up on FEAT web site. Then we will all be able to send every Letter to the Editor that we write to (hopefully) hundreds of newspapers from coast to coast with the push of a button.

Here's another idea. Find a newspaper website, any one. Search the site for "autism" and track down the email addresses for the reporter(s) involved in the stories. Email those to me. Keep them seperate from the Letters to the Editor email addresses. I will build a mailing list of reporters across the country who have written on autism. As with the Letters to the Editor, all of your future notes can be sent to every one of them with the push of a button.

Keep these mailing lists (letters to the editor, reporters) handy. When you are tired and out of ideas, sit down and write 5 lines. Drag it into a mailing list and send it off. You have done your part for today.

We need a champion in Ottawa. I think Jack Layton and the NDP would like nothing better to come out collectively swinging on this issue. They have a nothing to loose and a lot to gain by being the first off the blocks. Check out the website…focus on TOmmy DOuglas, investment in kids etc. If you are with me on this one, post an email mailing list for all the NDP MP's and lets start mailing them too.

Show me the email……

[Sabrina Freeman]

Dear Chat Board Members,

Below is a press release from an influential disability group regarding the Auton case. Enjoy!

SUPREME COURT BETRAYS EQUALITY GUARANTEES

MEDIA RELEASE

THE SUPREME COURT OF CANADA DECIDES THAT AUTISTIC CHILDREN DO NOT HAVE A RIGHT TO HEALTH SERVICES

(Toronto – November 19, 2004) LEAF (Women’s Legal Education and Action Fund) and its intervention partner DAWN (DisAbled Women’s Network) Canada say that this morning’s decision from the Supreme Court in Auton v. British Columbia is devastating for all disadvantaged persons. At issue is whether the B.C. Government’s refusal to fund health services to ameliorate the effects of autism violates the equality rights of autistic children, rights guaranteed in the Canadian Charter of Rights and Freedoms. The Court found that the failure to provide autism related health services does not constitute a breach of the Charter’s s. 15 guarantee.

The Court’s decision has turned back the clock by decades on equality rights progress in Canada by its ruling in Auton. The Court has applied a narrow and formalistic interpretation of the equality guarantees in s. 15 of the Charter. The critical flaw with the Court’s reasoning lies in its narrow conception of health services – it endorsed a conception of health services that is focused on the able-bodied norm, and accepts that norm instead of challenging it as exclusive and discriminatory. It takes the current health services framework as natural, and the implication is that anything outside of it is “extra” or “abnormal”.

The LEAF/DAWN argument was that the government discriminated because it failed to respond to the needs of autistic children – the Court found that there was no s. 15 breach because the services were not provided – this kind of restrictive and circular reasoning is a betrayal of the Court’s early promise to apply the equality guarantees in a broad and purposive manner. The Court’s concept of equality recognizes only formal equality, everyone has the equal right to sleep under the bridges.

The Court justified its reasoning in part based on the novelty of the services at issue. The disadvantaging effects of failing to provide the services in this case were clear. Governments should not be allowed to stall the provision of equality because a service or treatment is new.

As a result of the Court’s decision, disabled persons are to be treated as second-class citizens because the Court did not acknowledge that the health system privileges the able-bodied. Autistic children in particular will remain at risk of isolation and institutionalization. The negative effects will be compounded for girls with autism. For example, women with autism who are institutionalized are likely to experience one of the most serious forms of gendered disability discrimination – the physical and sexual abuse that is prevalent in institutions.

Counsel for LEAF and DAWN are Dianne Pothier and Fiona Sampson.

Contact:
Fiona Sampson, LEAF Counsel (416) 595-7170 ext. 223
Catherine Frazee, DAWN Equality Rights Committee (905) 304-8191

[Nancy Walton]

This is an e-mail I gave to my co-workers. Feel free to plagerize.

nancy

Dear collaegues

Last Friday, the Supreme Court of Canada made a decision against parents of autistic children, saying that the provinces do not have to provide
funding for therapy for these children. Our only hope now is to change the Health act to include autism treatment.

In the staff room I have put a petition that will be tabled in the house of commons this Tuesday (stay tuned to your TV's that night). The MP's have 45 days to respond. Meanwhile, we hope to send a clear message to the Canadian government that Canadians will not stand for neglect of autistic children. Please sign the petition (if you are Canadian) and put your address. I'll be sending these in on Friday.

With this therapy, some autistic children recover to the extent that they are indistinguishable from their peers (I have met a few of these children). While other children do not competely recover, they continue
to learn how to socialize, do regular school curriculum and learn skills that would make them employable by the time they are adults. For some
autistic children, regular therapy prevents severe self-injury or violent
actions.

Many parents have had to chose between their losing their home or losing their child. The therapy is very expensive and thus far, the government does not provide enough money to parents to pay for the therapy. For most
parents there isn't even a choice. If parents are not able to come up with the $1500 per month, they cannot provide therapy for their children. Many of these children end up institutionalized at high cost to tax
payers. Some are put into foster homes because parents cannot deal with
their difficult behaviors. The foster parent receives up to $3500 per month to take such a child into their home.

If you would like more information on autism treatment and it's benefits, feel free to ask me about it on those rare occasions that I make it to the staff room.

[Mike & Jean]

I would encourage anyone posting ideas, suggestions etc regarding Auton and how to move forward to also post to the Autism Society discussion forum (you need to be ASBC member who has activated this function), the greater our reach the better.

[Monika Lange]

Good, I'm glad you approve of my plagiarism! I just remembered, I used your prostrate comment too. I did manage to come up with one original idea in my letter though, and that was, I wonder if Attorney General Geoff Plant is willing to deny children cleft plate surgeries because they are "costly". I qualified the statement by adding "My words are angry but I will continue to direct them at anyone, Government Minister or not, who sugggests my son is a second class citizen. Let the Attorney General take it just as personally as I and my child have for the last ten years."

[Stephen Paperman]

Monika…if my pitiful little thoughts are of any use, you're more than welcome to them. And it does my heart good to see so many people out there in the fighting mood. Right now I'm so angry I could spit. I have now lived long enough to see our kids shat upon by two political parties, three governments, and the Supreme Court of Canada. It seems only the honorable justices of the BC Supreme Court and Court of Appeals have any true sense of what Canada and the Canada Health Act are all about. It will likely take me another few weeks before my feelings are sufficiently calmed for me to be an acceptable presence to my friends and family, let alone anyone else.

To all of you who have posted this week and shared your letters to the editor and forwarded the cause of petitions to Ottawa, thank you from the bottom of my heart.

S.P.

[Monika Lange]

Message to Stephan Paperman,
I wrote a letter for my local newspaper in Kitimat today and I borrowed a couple of ideas from your post (eg, Sindi Hawkins, Fast Ferries). I also emailed the letter to the Sun but have no idea if it will get in there. I hope you don't mind. They made my letter more convincing. Just thought I should let you know, and thank you.

[Karen Anthony]

Hi Everyone,

I thought I would copy my letter to the editor of the Victoria Times-Colonist on this chat board also. I have not had much success with my letters actually being published…

Letters to the Editor
Times-Colonist, Box 300
Victoria, BC V8W 2N4

Re: “Treatment for autism not a right”
Times-Colonist, November 20, 2004

How do you put it into words? “Dismayed” is far from strong enough – that the Supreme Court of Canada could not find the fortitude (collective or not) to “word” a judgment that would alleviate the suffering and offer a chance to those afflicted with this devastating neurological disorder with appropriate, scientifically proven treatment. We do not need the “sympathies” of judges or others, but true leadership to stop the injustices that have happened and will continue to happen over the years. The judgment has left a lot of questions, not the least of which is, “Who is exactly watching the watcher?”

For us it is a sad day when “applause” is found by the provincial governments, at the expense of our child and others. It cuts through the heart.

What does this say about being Canadian and our Charter? Personally, I am ashamed to be called a Canadian and the Charter would appear to be worth less then the paper it is written on. The divisions within society are brutally apparent now. We are at the mercy of the Provincial Government who have been given “carte blanche” to decide who is worthy and who is not to receive medical treatment. The perceived high moral and ethical standards we wave in the face of ourselves and other countries are a sham.

For those who are perceived by the government as less than worthy, it truly is “open season”. Be wary, you could be next…

Karen Anthony
(Auton/Anderson v. AGBC)

[Author]

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