[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]

Medicare for Autism Now!

Status Update

We ask the simple question:

"If you are elected to the House of Commons on Oct. 14th, will you publicly commit to supporting legislation which will amend the Canada Health Act to include autism treatment?"

The Responses:

Ian Sutherland (Liberal – West Vancouver Sunshine Coast Sea-to-Sky Country, BC)
"YES, I am publicly commiting to support ammending the Canada Health Act to include Autism treatment in Medicare."

John Weston (Conservative – West Vancouver Sunshine Coast Sea-to-Sky Country, BC)
No

Deborah Meredith (Conservative – Vancouver Quadra, BC)
No. "waste of time"
Read more about Deborah's answers on Harold Doherty's blog:
http://autisminnb.blogspot.com/2008/09/deborah-meredith-conservative-candidate.html
http://autisminnb.blogspot.com/2008/09/deborah-meredith-clarifies-autism-issue.html

Dan Grice (Green – Vancouver Quadra, BC)
Yes. "Yes, I support public funding to provide skill training to children with autism at an early stage."

Sukh Dhaliwal (Liberal – Newton North Delta, BC)
"Yes"

Nao Fernando (NDP – Fleetwood Port Kells, BC)
Yes. "I am pleased to indicate my complete support for the inclusion of treatment for autism in Canada's national public health care system."

Brenda Locke (Liberal – Fleetwood Port Kells, BC)
"Yes, if elected to the House of Commons on October 14 would support legislation that will amend the Canada Health Act to include autism treatment under Medicare."

Amy Collard (Green – Halton, Ont)
Yes. "As your MP, I would strongly advocate for changes to the Canada Health Act to include not only autism treatment, but also to include diagnosis and prevention."

Tony Clement (Conservative – Parry Sound-Muskoka, Ont)
No. "To answer directly, I cannot in good conscience support the addition of one specific condition to the CHA."

Garth Turner (Liberal – Halton, Ont)
"Yes, I will. And I have made this clear in the past."

Bonnie Brown (Liberal – Oakville, Ont)
No. "Accordingly, regarding the CHA amendment you favour, I would have to respectfully disagree."

Paul Szabo (Liberal – Mississauga South, Ont)
Yes. "I voted for it in the last Parliament and I will do it again."

Marnie Mellish (Green – Burlington, Ont)
"Yes, I will. I have my Masters degree in Special Education and have taught special education classes in my youth. I fought long and hard for my students and got into trouble for helping parents organize to bring their concerns to the principal and the school board."

David Laird (NDP – Burlington, Ont)
"Yes, organic brain disorders and developmental disorders are of increasing concern to many Canadians at a time when provincial governments are reducing supports in this vital area. I support increasing the scope of the Canada health act to include supporting individuals requiring specialized supports to achieve their maximum potential."

Jamie McGarvey (Liberal – Parry Sound-Muskoka, Ont)
"Yes I most certainly would. I am a huge supporter of early childhood education and I also recognize that education is an important part of the process with Autism Treatment. I believe putting the money up front in the early stages for treatment reduces costs later on."

Erich Jacoby-Hawkins (Green – Barrie, Ont)
"Short answer: Yes."

Valerie Powell (Green – Simcoe North, Ont)
Message was NOT in the affirmative to Medicare for Autism.

Alice Finnamore (NDP – Tobique Mactaquac)
"My answer to your question is an unqualified YES. I believe in science-based treatment of autism, and if elected will do everything I can to bring in coverage for ABA and IBI."

[Peter Wong]

Tony and other parents,

Thanks. I totally agree with you to vote for the candidate, no matter which party, who is publicly committing to supporting Medicare coverage for autism treatment.

However, Richmond is not one of the 14 constituencies (http://www.medicareforautismnow.org/ridings.html), I need consider other issues.

In fact, I found very limited information when google Raymond Chan with Autism or Alice Wong with Autism.

I have sent the simple question to Mr. Raymond Chan and Mrs. Alice Wong. If I receive any thing, I will post it here.

Anyway, I think I found more info about the “split income” http://www.sandeeppandher.ca/EN/417/16731.

Keep up the good fight.

Peter

[Amber Armstrong]

Brenda Locke (liberal fleetwood-port kells) came door to door in my neighborhood. I had a pretty good chat with her. I believe she will stand by her promise and do her best to put autism in the CHA. I am not normally a liberal voter but as Tony said we must be single-issue voters regardless of the party.

[Super Dad]

Hi Peter,

Please don't let the "income splitting" thing distract you from the Medicare for Autism Now initiative.

Please do not vote for any candidate, no matter which party, who is not publicly committing to supporting Medicare coverage for autism treatment.

We must learn to be single-issue voters. It was single-issue voters who got women the right to vote. It was single-issue voters who made the environment a big election issue. It is because of single-issue voters that the US will soon have either a black president or female vice-president.

To succeed, we need to have laser-sharp focus. Some may say I am too single-minded, but the fact is that real achievers prioritize, and sacrifice their lower priorities.

Tony

[Peter Wong]

Dear all,

Any one know more info about this "split income" thing?

Thanks a lot.

Peter

http://www.theglobeandmail.com/servlet/story/LAC.20080920.ELECTION20/TPStory/National/columnists

Meanwhile, Mr. Harper continued efforts yesterday to appeal to the female vote with a pledge to offer new tax breaks for Canadians coping with disabled family members. The $80-million move would allow families where one spouse has quit work or reduced work hours to care for a disabled family member to split income between spouses to lower taxes. Conservative officials said that three-quarters of caregivers are women.

[Louise Taylor]

Medicare for Autism Now! – Attention all Parents & Supporters:

I am responding to Barbara Rodriguez' question about the Medicare for Autism Now! initiatve in the current federal election. We are targeting 14 ridings across Canada that had the slimmest margin of win (2% or less) in the previous election. The question that we are asking all of the candidates is: "If elected to the House of Commons on October 14th, will you publicly commit to supporting legislation that will amend the Canada Health Act to include science-based treatment for autism under Medicare?"

We are asking them to reply with a simple "Yes", "No" or "Don't care".

I would like to encourage all of you, regardless of what riding you live in, to put this question to each of your candidates. You can do so in person, via letter (send along a copy to your local paper), at all-candidate's meetings, etc. Let them know that your support on October 14th depends on their reponse to this question.

For regular updates on the Medicare for Autism Now! political initiative, please check our website at http://www.medicareforautismnow.org

[Andrew Kavchak]

Well, well. Clement won't discuss a National Autism Strategy, but he would consider a National Drug Plan…if the provinces would work with the feds (and there's money in the system!).
________________________
Clement open to drug plan but sees other options

Updated Tue. Sep. 23 2008 10:09 AM ET

CTV.ca News

Conservative Health Minister Tony Clement says he's open to creating a catastrophic-illness drug plan such as the one promised by the Liberals and the New Democrats, but a brand new initiative isn't the only solution.

Speaking to CTV's Canada AM on Tuesday, Clement said there is already money in the health care system that could go towards prescription drugs if the provinces and feds could work together on the issue.

"What I've said to my provincial counterparts is I'm willing to go forward with a new initiative, but there's money in the system now," Clement said from Huntsville, Ont.

"If we work together to do bulk purchasing of pharmaceutical products, if we work together to reduce our generic drug costs — because our costs are 25 to 30 per cent higher than they have in the U.S — then we can find the money to put to new, innovative drugs or drugs for rare diseases."

Clement also suggested the Liberals and NDP would simply throw money at the issue rather than coming up with a real solution.

Both of the Conservatives' primary opponents have promised to provide funding for Canadians dealing with the costs of catastrophic illness or disease.

Liberal pledge

Liberal Leader Stephane Dion promised $900 million over four years to create a new plan.
Calling it "one of the most fundamental policies a government can provide to its citizens," Dion said the proposal would cover the costs of drugs for serious illnesses such as cancer, diabetes, and arthritis.

"In the Canada we want, Canadians battling a serious illness should not be forced to sell their house to buy the prescription medicines they need — not in our Canada. Never," Dion said when he made the campaign promise.

New Democrat promise

New Democrat Leader Jack Layton's drug proposal would cover 50 per cent of catastrophic drug costs for seniors and families facing illness, above $1,500 per year per person.

"The goal of this plan is to provide Canadians with a safety net so that they won't be bankrupted by prescription drug costs," Layton said in a news release.

"It will give every Canadian — wherever they live, whatever they earn or have saved — a basic guarantee and a basic level of help and financial security."

[Andrew Kavchak]

Hi Folks,
Thank you for posting the update with the responses from some of the candidates so far. But with some you have to wonder. For example, one says that they would support amending the legislation to include treatment under Medicare (that's what we want), as well as diagnosis and prevention (diagnosis is already covered by Medicare, although you may wait a hell of a long time to see a specialist as we did at the Children's Hospital of Eastern Ontario in the nation's capital). This prevention thing is interesting. It reminds me of the notice I recently saw that former Playboy Playmate Jen McCarthy is writing a book about the prevention of autism. How is it possible to write about the prevention of autism if we still don't know the cause? Similarly, how can Medicare provide for the prevention of autism if we don't know the cause? Nonetheless, I am impressed by the candidate's commitment to this issue and hope that if they are elected they will table a Private Members' Bill making autism illegal. That should solve the problem.

On a more serious note, the Bonnie Brown reply is disturbing. She was the former Chairperson of the Standing House Committee on Health. A former Cabinet Minister, Judy Sgro, suggested to me one day that Ms. Brown is "really good" and that I should write to her asking her to put autism on the Committee agenda. This goes back a few years, but my recollection is that many months later I received a letter from her simply confirming that autism is NOT on the Committee's agenda. It really makes you wonder why some folks get involved in one Committee or another, or one Ministry or another. We know tht Clement is not particularly concerned about the health of Canadians, certainly not Canadians with autism, so why is he the national Minister of Health? It can't just be that pension thing…

[Super Dad]

To all voters in Vancouver Quadra:

As previously noted, when we attempted to meet with Deborah Meredith, the Conservative candidate, she said she had no time for us.

She then sent us a clarification:

"What I said is that if I am elected I will meet with you. If not, it is a waste of time for both of us."

Here is the translation:

"You are obviously a pitiful minority with no political significance. Trying to win such a small number of votes is a waste of time."

Thank you, Ms. Meredith, for being truthful and not pretending to have any respect for us. That's really quite refreshing.

[Super Dad]

Medicare for Autism Now!

Status Update

We ask the simple question:

"If you are elected to the House of Commons on Oct. 14th, will you publicly commit to supporting legislation which will amend the Canada Health Act to include autism treatment?"

The Responses:

Name	Party	Position
Ian Sutherland	Liberal	"YES, I am publicly commiting to support ammending the Canada Health Act to include Autism treatment in Medicare."
Deborah Meredith	Conservative	No. "I am awfully busy right now trying to win this election as I'm sure you can understand." Read more about Deborah's answer on Harold Doherty's blog.
Nao Fernando	NDP	Yes. "I am pleased to indicate my complete support for the inclusion of treatment for autism in Canada's national public health care system."
Brenda Locke	Liberal	"Yes, if elected to the House of Commons on October 14 would support legislation that will amend the Canada Health Act to include autism treatment under Medicare."
Amy Collard	Green	Yes. "As your MP, I would strongly advocate for changes to the Canada Health Act to include not only autism treatment, but also to include diagnosis and prevention."
Tony Clement	Conservative	No. "To answer directly, I cannot in good conscience support the addition of one specific condition to the CHA."
Garth Turner	Liberal	"Yes, I will. And I have made this clear in the past."
Bonnie Brown	Liberal	No. "Accordingly, regarding the CHA amendment you favour, I would have to respectfully disagree."
Paul Szabo	Liberal	Yes. "I voted for it in the last Parliament and I will do it again."
Marnie Mellish	Green	"Yes, I will. I have my Masters degree in Special Education and have taught special education classes in my youth. I fought long and hard for my students and got into trouble for helping parents organize to bring their concerns to the principal and the school board."
David Laird	NDP	"Yes, organic brain disorders and developmental disorders are of increasing concern to many Canadians at a time when provincial governments are reducing supports in this vital area. I support increasing the scope of the Canada health act to include supporting individuals requiring specialized supports to achieve their maximum potential."
Jamie McGarvey	Liberal	"Yes I most certainly would. I am a huge supporter of early childhood education and I also recognize that education is an important part of the process with Autism Treatment. I believe putting the money up front in the early stages for treatment reduces costs later on."
Erich Jacoby-Hawkins	Green	"Short answer: Yes."
Valerie Powell	Green	Message was NOT in the affirmative to Medicare for Autism.

[Author]

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