[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

[Dione Costanzo]

Medicare for Autism Now!

WHAT: Rally – Come and find out how you can make your vote count!
WHEN: Saturday, October 4, 2008, 2:00 – 4:00 PM
WHERE: Eaglequest Golf Club, 7778-152nd St., Surrey, BC V3S 3M4

Parents, professionals and advocates will gather at the Eaglequest Golf Club in Surrey on October 4th in support of Medicare for Autism Now!

The “Medicare for Autism Now!” national campaign is focussed on creating policy change to make ABA/IBI treatment available for all Canadians diagnosed with autism, regardless of age or where they live.
During this election we will support candidates in specific constituencies across Canada, including BC, Ontario and the Maritimes, regardless of party affiliation, who will publicly commit to supporting legislation which will amend the Canada Health Act to include autism treatment under Medicare.
We need to let those who govern and those who wish to govern know that they are going to be held accountable at the ballot box in this federal election.
You can help end the discrimination against some of the most vulnerable Canadians!
FAMILY EVENT – bring the kids! There will be toys, crafts, games and face painting! Parent supervised – please bring a small snack for your child!
Featured speakers will include:
Dr Sabrina Freeman * Jean Lewis * Beverley Sharpe
Dr. Glen Davies * Louise Witt * Dr. Melvin deLevie
David Marley * Dave Chan * Dubravka Skrijelj * Dione Costanzo

** GIFT BASKET RAFFLE ** ** 50/50 DRAW **
** PLENTY OF FREE PARKING **
For more information or to find out how you can help, go to: http://www.medicareforautismnow.org/

[Super Dad]

AUTISM AWARENESS

I have seen lots of people try to raise "Autism Awareness" with absolutely no idea of what we need the public to be aware of. Some wear trinkets with the words "Autism Awareness" which I guess means "autism exists" (but I think the public already knows that). One person is doing a "Run the Dream" tour across Canada, and so far none of his supporters can tell us what the dream is.

The next time you run into one of these well-intentioned folks, please ask them to try spreading these key points:

1. Autism is highly TREATABLE.
2. Effective treatment EXISTS.
3. Treatment is being MISMANAGED.
4. This mistake is EXPENSIVE.

Here are more details:

1. Autism is TREATABLE:

Autism is a neurological disorder that can be reversed to a such a degree that the patient actually loses the diagnosis. Based on the concept of neuroplasticity, intensive brain exercises can be used to rewire the patient's brain. Some patients do not lose their diagnosis (especially older children with less neuroplasticity), but when medical treatment is provided at the right intensity at the right time, all patients do become significantly less disabled.

2. Medical treatment EXISTS:

Even though we do not know entirely understand what causes autism, through scientific experimentation, researchers have known about an effective medical treatment for more than 20 years. (It's called Early Intensive Behavioural Intervention.) The medical treatment has been proven on human subjects in clinical trials, and these clinical trials have been replicated over the years by independent research groups.

3. Treatment is MISMANAGED:

Medical treatments should be managed and financed by the Ministry of Health. The medical treatment for autism, however, is currently managed by government agencies not qualified to make medical decisions. Even though autism is a medical condition, it is being treated by the government as a "social issue." Instead of medical professionals, it is social workers who decide who gets treatment, how long they can wait and how little they need. In most cases, families of autistic children struggle to raise the money that they need but do not get.

4. The mistake is EXPENSIVE:

It is much less expensive to treat the disease than to support the disability in the long run. A child who loses the diagnosis will grow up to be a tax payer instead of a burden on tax payers. A simple cost-benefit analysis shows a difference of hundreds of millions of cost to the tax payer, not to mention the cost of human suffering.

[Louise Taylor]

Medicare for Autism Now Society
http://www.medicareforautismnow.org

October 1, 2008

For Immediate Release:

Medicare for Autism Now-BC Campaign Rally and Ontario Tour

Vancouver, BC:- The Medicare for Autism Now Society today announced it will be holding a campaign rally on Saturday, October 4, 2008 beginning at 2:00 p.m. at the Eaglequest Golf and Country Club, 7778 – 152nd St. in Surrey. This rally is part of the society’s “Two Percent Solution” campaign aimed at influencing the electoral outcome in 14 targeted federal constituencies across the country.

“In its Auton decision, the Supreme Court of Canada told parents of autistic children to “get political” if they wanted to see their children no longer be orphans of the Medicare system,” states Jean Lewis, a founding director of the Medicare for Autism Now Society. “We’ve taken the judiciary at their word and have launched a nation-wide campaign to elect MPs, regardless of which political party holds office following this election, who will vote for legislation that enshrines the treatment of autism under Medicare because it is the morally right and economically sensible thing to do.”

The rally is intended to attract parents of autistic children and their supporters from across Metro Vancouver. Its aim is to promote a grassroots campaign that will help elect candidates to Parliament who support Medicare for Autism Now!

“As a Canadian who does not have an autistic child, but who believes strongly in the fundamental values of this country, I am disgusted by the federal government’s wilful indifference to the plight of these children and their families,” says Scott Hean, who will be master of ceremonies at the rally.

Representatives of Medicare for Autism Now will be travelling to Ontario the next day for a week of campaigning in target constituencies, including Parry Sound-Muskoka, political home to Canada’s Health Minister, Tony Clement.

For further information, contact: Jean Lewis at 604-925-4401 or 604-290-5737, and jean.lewis@telus.net

[Louise Taylor]

Attention all parents and supporters!

Please make it a priority to attend one or more of the following All-Candidate's meetings in our 2 targeted ridings in Surrey. This will be your opprtunity to find out who supports our Medicare for Autism Now! initiative, and who doesn't. Let's be sure our children's voices will be heard in this election!

FEETWOOD-PORT KELLS:

Wednesday, October 1st
730-930 PM
North Wood United Church
8855 – 156 St, Surrey

Tuesday, October 7th
7-9 PM
Fraser Heights Secondary School
108th Ave. and 160th St, Surrey

NEWTON-NORTH DELTA:

Wednesday, October 1st
7-9 PM
North Delta Inn
11920 – 70 Ave., Delta

Wednesday, October 8th
4PM
Kwantlen University
12666 – 72nd Ave., Surrey

[Andrew Kavchak]

Interesting to compare the elections on both sides of the border. Who can deny that the US President has considerably more responsibilities and issues to deal with domestically and internationally than the Canadian Prime Minister. Yet, the candidates south of the border actually have time for autism. McCain actually mentioned autims in his nomination acceptance speech. Below is a short interesting article by one parent explaining why they are contributing to the Obama campaign.

When will Canadian political leaders decide to turn their rhetoric about "inclusion" into reality?
______________________
From: http://www.in-forum.com/articles/index.cfm?id=216154&section=Opinion&freebie_check&CFID=93461387&CFTOKEN=16802767&jsessionid=88302130fbe96c647f30

Obama has plan for autism research

By Sarah Beck,

Published Saturday, September 27, 2008

I stepped out of my comfort zone last week.

I volunteered for the Barack Obama campaign – not to lick stamps or stuff envelopes. I volunteered to call voters.

Ask my husband – I hate calling people.

But I’m doing it because I have a son with autism. While both candidates have voted to support the Combating Autism Act of 2006 and have expressed interest in increasing autism research and awareness, Obama is the only candidate to outline specifically what he will do for autistic Americans in the future.

His plan for the future – my son’s future – would include appointing a federal autism spectrum disorder coordinator to oversee research, monitor funding and train medical professionals to help screen for autism as early as possible. He also wants to fully fund Individuals with Disabilities Education Act, which allows every child with disabilities to receive the special education resources they need at school.

I feel that Obama is the only one who really gets it – who really understands that autism affects 1 in 150 children. Obama understands that families are struggling to find the resources and information to best help their children. He understands that early intervention funding now will pay dividends in the future when these children can be more fully functional in society, have a better quality of life, and decreased dependency on government programs in the future.

My son may only be 1 in 150. But he has a voice for change, too.

[Andrew Kavchak]

Hey, hey, hey!!! U.S. First Lady calls autism a "global health issue"! Why is it so difficult to get a single Canadian politician with hands on the levers of power to say the same thing and take corresponding action?
________________
From: http://www.iht.com/articles/ap/2008/09/26/news/UN-UN-Autism-Awareness.php

First ladies gather to raise autism awareness

The Associated Press
Published: September 26, 2008

NEW YORK: More than a dozen of the world's first ladies on Friday called for enhanced research on autism worldwide.

Ban Soon-taek, wife of the U.N. Secretary-General Ban Ki-Moon, said "not too long ago, those with autism were set aside.

"Today this reality is still prevalent in some parts of the world," she said.

Panama's first lady, Vivian Fernandez de Torrijos, emphasized that early intervention is key.

U.S. first lady Laura Bush also sent a note for the event, calling autism "a global health issue."

"As we work to identify what causes autism, it is important to raise public awareness as early diagnosis and intervention helps children achieve their maximum potential," she said.

Bob Wright, co-founder of the American advocacy group Autism Speaks, said there is a shortage of autism experts and trained professionals worldwide and that governments need to provide more funding to support affected families.

Wright's grandson was diagnosed with autism in 2004, after which he and his wife, Suzanne, started the group. In the U.S., one of every 150 children is diagnosed with an autism spectrum disorder, the group says.

Autism has always been diagnosed by making judgments about a child's behavior. For decades, the diagnosis was given only to children with severe language and social impairments and unusual, repetitive behaviors.

But in the 1990s, the autism umbrella was expanded and now includes a group of milder, related conditions.

In 2007, the U.N. adopted a resolution that declared April 2 World Autism Awareness Day.

[Julie Ng]

Vancouver-Kingsway Riding

I send out an email to our liberal candidate a few weeks ago and this is there response which basically means – NO (with alot of BS added in to confuse the answer).

——————————————–

Thank you for your recent email. Wendy has asked me to pass on her reply.

The Liberal Party of Canada believes that in order for Canadians to remain healthy, and to sustain the quality of our public health care system, public efforts to promote health and disease prevention must be incorporated.

In Budget 2005, we built on the initial investments to the Public Health Agency of Canada by providing $300 million over five years for the Integrated Strategy on Healthy Living and Chronic Disease. The Strategy includes a series of activities to promote healthy eating, encourage physical activity and healthy weight, which can help to prevent and control chronic diseases. One component of the Strategy targets mental health specifically, with an initial investment of $4.5 million over five years, and $1 million per year ongoing.

In April 2005, the previous Liberal government announced $3.2 million funding from the Canadian Institutes of Health Research (CIHR) to fund research projects aimed at improving mental health in the workplace.

That being said, we understand that certain matters – such as the planning and delivery of mental health services – fall under provincial and territorial jurisdiction.
However, a Liberal government, chiefly through the Public Health Agency of Canada and Health Canada, would work closely with the provinces and territories to develop responsive, coordinated and efficient mental health systems. The resources we provided through the Integrated Strategy on Healthy Living and Chronic Disease is an example of those kinds of collaborative efforts.

”Minister Flaherty is on the record as opposing the policy in the past, saying just a few weeks before the government's announcement that: "…it is not clear [such a costly and precedent-setting tax advantage] would be appropriate." (Toronto Star, September 14, 2006)

I trust that our response provides you with the information you require.

In addition, you can find the complete Liberal platform at http://www.liberalparty.ca and the Made in BC agenda at http://www.teambc.ca. More information on Wendy and her priorities can be found at http://www.wendyyuan.ca

I hope Wendy can count on your support in this election.

All the best,

Mary Pynenburg

Campaign Manager

Wendy Yuan Campaign

Vancouver-Kingsway

[Super Dad]

To all voters in Vancouver Quadra:

I made a mistake in my previous message. It's the families in "West Vancouver Sunshine Coast Sea-to-Sky Country" that should vote for Bill Forst.

In Vancouver Quadra, the latest status is as follows:

1. Deborah Meredith (Conservative): In an email to us, she says helping a neglected minority is a "WASTE OF TIME." Please let her know what you think:

<deborah.meredith@sauder.ubc.ca>
<info@deborahmeredith.ca>
<info@quadraconservatives.ca>
<jim@quadraconservatives.ca>

2. Dan Grice (Green Party): He says "I will vote for the provision of Medicare coverage for science-based treatment of autism."

3. Joyce Murray (Liberal) has yet to give us an official response. When we interviewed her, she seemed clueless and said something like: you're not the only minority we discriminate against. We hope she has done more homework since the interview. May be you want to help her out:

<info@joycemurray.ca>
<murrayj1@part.gc.ca?
<info@lpcbc.com>

Here is how we should vote:

1. If Joyce Murray says YES to us, let's do everything we can to wipe out Deborah Meredith.

2. If Joyce Murray says NO to us, let's all vote for Dan Grice to make a point.

Please remember: it doesn't matter if you are not a Green Party fan. We need to be focussed on our #1 priority – JUSTICE for our children.

Tony

[Super Dad]

Medicare for Autism Now!

Status Update

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

West Vancouver Sunshine Coast Sea-to-Sky Country, BC:

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

Bill Forst (NDP – West Vancouver Sunshine Coast Sea-to-Sky Country, BC)
YES

Vancouver Quadra, BC:

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. "I will vote for the provision of Medicare coverage for science-based treatment of autism."

Newton North Delta, BC:

Sukh Dhaliwal (Liberal – Newton North Delta, BC)
YES

Teresa Townsley (NDP – Newton North Delta, BC)
YES. "As a former nurse and current school trustee, I wholeheartedly support amending the Canada Health Act by placing scientifically proven treatment for ASD under medicare."

Fleetwood – Port Kells, BC:

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."

Halton, Ont:

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."

Lisa Raitt (Conservative – Halton, Ont)
NO.

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

Oakville, Ont:

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

Michelle Bilek (NDP – Oakville, Ont)
YES

Mississauga South, Ont:

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

Burlington, Ont:

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."

Mike Wallace (Conservative – Burlington, Ont)
NO.

Parry Sound-Muskoka, Ont:

Tony Clement (Conservative – Parry Sound-Muskoka, Ont)
NO.

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."

Barrie, Ont:

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

Simcoe North, Ont:

Valerie Powell (Green – Simcoe North, Ont)
NO.

Tobique Mactaquac, NB:

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."

West Nova, NS:

George Barron (NDP – West Nova, NS)
YES "In answer to your question; absolutely."

[Super Dad]

I wish to echo Jemma's sentiments regarding the Walk to Autism event.

If you have the spare time to support an event, it can be put to much better use at the Oct 4 "Medicare For Autism Now" Rally.

If you have spare cash to donate, please go to:

http://medicareforautismnow.org/

and click on "Donate."

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WALK/RUN NOW FOR AUTISM

Recently I have heard a lot of people talk about the upcoming "Walk/Run Now for Autism" event, organized by Autism Speaks. On the surface it seems to a good thing, but I am not so excited about it. For those who don't know, Autism Speaks Canada is very different from their America counterpart.

Before you participate in the event, may be you should find out what Autism Speaks Canada has done for us. I'll give you a couple of examples:

1. When they held a similar event in Edmonton, they invited Mike Lake as a guest of honour. Mike Lake is the MP who has done everything within his power to destroy our chances of getting Medicare coverage for autism. Despite having an autistic son himself, he works against us just to make his boss happy.

2. During the Senate Hearings into funding for the treatment of autism, the Executive Director of Autism Speaks Canada was asked if she supported an amendment to the Canada Health Act to include autism treatment in Medicare. She actually said NO.

If supporting this event means raising more money to pay the Executive Director to make friends with Mike Lake, I am not sure it's the best thing for our children.

Jemma

[Author]

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