[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

[Andrew Kavchak]

Hi Folks,

I find the comments in this article about the Ontario Premier's brother, David McGuinty, interesting. He happens to be my MP. When I met with him in his office in September 2004 after his first election to the House of Commons he rejected my request that he be the "autism champion" in his Party and the House of Commons.

Instead, he said that he "would make a few phone calls". That was it. No commitment to anything apart from dialing a few numbers. What numbers? To say what? Who knows?

When I wrote to him late last year pointing out that his cruel brother just informed my family that the funding for our six year old son's autism treatment was going to be cut off, it took David McGuinty about six months to write back to me and tell me that the Liberals (other MPs – not him) tabled a Motion and a Private Members' Bill to get a National Autism Strategy. Sorry about your problem.

Now suddenly he's working behind the scenes and is wondering whether the Canada Health Act might be amended. Good David. Good. It's only been four years…but better late than never… Any chance we might actually see some action?
_______________________

Ottawa Sun
Thursday, September 18, 2008

Autism group takes funding battle to the hustings

By SUSAN SHERRING

Families dealing with autism have been "shafted" by governments of all political stripes and are vowing to change that this federal election.

"We've been shafted left, right and centre," said Andrew Kavchak, an active member of the autism community in Ottawa.

Kavchak, like hundreds of parents across the country, is putting his hope on a new national group called Medicare for Autism Now Society.

"I'm extremely satisfied and happy there are parents within the community no longer willing to sit back and accept their fate, who are willing and have enough energy left over after taking care of their children," Kavchak said.

Medicare for Autism Now is targeting select ridings across the country which were close during the last federal election, and asking all the candidates if they will support autism treatment being included in Canada's medicare system.

The group had some success the last time around with two ridings in B.C. and have now expanded their efforts to 14 ridings in four provinces with a national campaign.

The group will be making their case in Ottawa early next month, hoping to catch the attention of all parties fielding candidates in the federal election.

While none of the ridings are in the Ottawa area, Kavchak says it's only a matter of time.

"I'd like to see it being adopted and used from coast to coast until justice is done," he said.

New Democrat candidate Marlene Rivier, running in Ottawa West-Nepean, agrees autistic children have been treated unfairly, and she for one is prepared to commit to funding treatment under medicare.

"I really think autistic children have been shortchanged. Commitments have been made to them and then those governments have failed to follow through on them. We need to extend treatment to those families, and continue examining evidence to ensure they are producing the outcomes we want for these children during the critical years. The fact they are being denied the help they need is really quite tragic," she said.

WORKED BEHIND SCENES

Ottawa South MP David McGuinty, running for re-election for the Liberals, says he's been working behind the scenes for the past four years on this very issue.

Yesterday, he pledged that whether sitting on the government side or in opposition, he'll push forward on including autism treatment under medicare.

"We need to find out how we might proceed and whether the Canada Health Act might be amended to include treatment for autism spectrum. My brother (Ontario Premier Dalton McGuinty) has been seized with this for years. It's a tough thing, a lot of demands. I've been working hard on this and it's something we have to move forward on," he said.

Louise Witt, a parent activist and Surrey campaign co-ordinator with the Medicare for Autism Now Society, said she has made this her life's work.

"My son is privileged enough that we can afford the treatment. But it disgusts me that other children don't get that just because their parents can't afford it," she said.

The non-partisan group doesn't endorse candidates.

"We get answers from candidates and post them on the Internet. The closer we get to our election date, we'll take out ad space in all of the local newspapers, advise our constituents and supporters, and make their own informed decision. We're a single-issue organization."

Witt and her group want to ensure the politicians keep their word after the election.

"We've been lied to many times. Our real work begins after the election. We expect politicians to have integrity. We'll tell them, 'If you go back on your word, we will out you in a very public manner'. "

[Super Dad]

Hi Everyone,

Would you please try to post and distribute these MFAN posters / fliers?

Oct 4 Rally Poster:
http://www.blossombodycare.com/archivedfiles/MedicareforAutismNowRallyOct4th.pdf

Medicare for Autism NOW! Info Poster:
http://www.blossombodycare.com/archivedfiles/MFANIfno.pdf

Here are some ideas:
– Put a stack in your office.
– Distribute at your kid's school.
– Post at grocery store bulletin boards.
– Post at community centre bulletin boards.

Tony

[Andrew Kavchak]

Hi Folks,

On Harold Doherty's blog site "Facing Autism in New Brunswick" he recently posted a message from NDP leader Jack Layton, which, among other things, stated the following:

______________
Jack's Response on Autism

First, both NDP MP Peter Stoffer and myself have challenged the federal government for not providing funding in its last budget to help families with autistic children. I fully recognize that families with autistic children are in crying need of support and they are very disappointed that the Conservative government has ignored their needs in their budget spending.

On the matter of voting, in the April 3, 2006 to September 14 ,2007 session of parliament MP Shawn Murphy introduced his private members legislation Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act. C-304 received first reading on May 17, 2006 but unfortunately it did not make it to third reading or a final vote because it died when the Harper government chose to prorogue that Parliament….
_____________

Well, that's not quite my recollection or documentation of history.

This FEAT BC website government affairs chatboard is a pretty good historic record in chronological order of the milestones in our collective struggle to get autism treatment covered by Medicare. Anytime you want to check who said what in Parliament about autism or want to know what was the date of a vote on something about autism, just scroll down the page.

If you scroll down to around February 21 2007, you will see a note that there was a motion to vote on the Bill a second time (second reading) and refer it to committee and the Bill was killed by the Tories and the Bloc who voted against it. The NDP, to their credit, voted in favour.

The Bill never got to the Committee stage and no House of Commons committee had a chance to examine the Bill and report on it to the House with any recommendations for amendments or anything. It is strange that the NDP Leader and his staffers who wrote the reply would demonstrate such amnesia.

Further surprising is that Layton did not even seize the opportunity to point out that the NDP voted for what we are asking and it was Harper and the Bloc who were our opponents on that day. I don't know what blaming the failure to pass the Bill on Harper's "prorogueing" of Parliament does for his argument when Harper in fact did worse and had his Party specifically kill the Bill in a vote before a Committee could even do a clause by clause examination.

How often does Layton get the history of his other priorities wrong? Oops! Maybe this is not a priority of his after all?

[Super Dad]

In my opinion: "In the Canada we want, Canadians battling a serious illness should not be forced to sell their house to buy the treatment they need, drug or non-drug — not in our Canada. Never."

Let's take this to our Liberal candidates, especially in the 14 battleground ridings.

Tony

*****

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080911/election2008_080916/20080916?s_name=election2008

Liberals promise $900M for drug expenses
Updated Tue. Sep. 16 2008 9:30 AM ET

The Canadian Press

HALIFAX — Liberal Leader Stephane Dion is promising $900 million over four years to create a new plan for catastrophic drug coverage.

In what Dion called "one of the most fundamental policies a government can provide to its citizens," the plan would cover drug costs for people living with serious illnesses such as cancer, diabetes, and arthritis.

Society has an obligation to help people with debilitating, chronic illnesses meet high prescription-drug costs that create prohibitive financial burdens on families, Dion said.

He said the proposed Liberal plan would ensure all Canadians have access to badly needed drugs no matter where they live.

"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 a Liberal government would work with its provincial and territorial counterparts to determine a minimum standard for federal coverage of catastrophic drug costs.

The Liberals would also compensate provinces that are already providing that level of coverage, he said.

The Liberal leader spoke at Dalhousie University's medical school, which is where NDP Leader Jack Layton was Monday to unveil a $1-billion plan to dramatically increase the number of nursing and medical students in Canada.

The level of prescription drug coverage varies considerably from province to province, Dion said.

But he noted the problem of meeting catastrophic drug costs is particularly critical in Atlantic Canada, where 24 per cent of the populace, or 600,000 people, have no drug plan.

"Far too many people who are not poor enough to be on social assistance and certainly not wealthy enough by any definition to afford the cost of these drugs are left to fend for themselves," he said.

"When the drug costs of an illness become too much for a family to manage, the federal government should be there to help."

*****

[Andrew Kavchak]

Tuesday, September 16, 2008
TIMES COLONIST (VICTORIA)
COMMENT, Page: A11

Challenges for parents of disabled

As a parent of a disabled child, I found Ian Haysom's column on the joys of parenting "special kids" offensive because it failed to acknowledge the truly serious impact that this experience has on families (Sept. 13).

For example, autism spectrum disorders, which affect one in 150 children born in Canada, bring to parents challenges that can cripple even the most loving and devoted families. Eighty per cent of couples who give birth to a child on the autism spectrum end up divorced. Families, and often single mothers, go bankrupt trying to fund behavioral therapy and other interventions, the cost of which is only modestly supported by the provincial government.

It is very hard to hold a job and provide for the needs of a child with a disability. That too provides further economic hardship.

You do find joy in your child but it is coupled with the heartbreak of constantly battling the education system and more particularly teachers who just cannot come to grips with the impact that disability has on academic performance.

My family ended up travelling to Italy, to use the analogy in Haysom's column, and when we arrived we discovered we had lost our credit cards, cash and hotel reservations. We don't speak the language so we've had a hard time explaining what's happened and everyone's having such a good time in Italy that they don't seem particularly concerned. We'd love to go to Holland. Apparently it's "a very magical, wondrous place."

Mary Fox

Victoria

[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 * 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]

To all voters in Vancouver Quadra:

We have attempted to meet with Deborah Meredith, the Conservative candidate, and she has sent us the following:

"If elected I would be happy to meet with you to talk about autism and the Canada Health Act.
I am awfully busy right now trying to win this election as I'm sure you can understand."

Here is my translation:

"What I care about is winning. Some day I may consider paying some attention to disabled children, but only if I win."

Please let her know what you think. Here are some email addresses for her and her team:

Deborah.Meredith@sauder.ubc.ca, info@deborahmeredith.ca, info@quadraconservatives.ca, jim@quadraconservatives.ca

She really should at least try to hide her contempt for her electorate.

[Mike & Jean]

Well said Andrew….I would like to just clarify a couple of important points.

In the last federal election, FEAT of BC initiated the "2% solution" in five BC constituencies. It is fair to claim that our non-partisan initiative effected the outcome of the vote in at least two constituencies.

Due to its success and the extreme interest from across Canada, we have created a new not-for-profit organization called, "The Medicare for Autism Now! Society" It is a national coalition of parents and other fair-minded Canadians who seek to have universal access to autism treatment (ABA/IBI) covered under Medicare.

We are now in a federal election campaign – now is the time to find out how to make your vote actually count to secure your child and future generations of Canadian children afflicted with autism access to the health care they desperately need.

For more information about Medicare for Autism Now! please see: http://www.medicareforautismnow.org
and come to the Medicare for Autism Now rally on Oct. 4th in Surrey. Check the website for more details.

[Andrew Kavchak]

Hi Folks,

I just submitted the article below to the newspaper Access Now (a publication by and about persons with disabilities) for their election issue.
_______________________

September 12, 2008.

Autism Update
Special to “Access Now” – The Election Edition

By Andrew Kavchak

During this federal election campaign it is really important for all Canadians who are concerned with healthcare issues and the treatment of disabled people to reflect on the Conservative record over the past three years and to consider the lack of relevant Party platforms going forward. The Autism file provides plenty of food for thought and necessitates corresponding action.

Autism treatment is not available under Medicare in any province. The B.C. families in the “Auton” case claimed discrimination and won in the B.C. courts. However, the Province appealed and all provinces and the federal government intervened in the Supreme Court of Canada hearings to deny kids with autism access to treatment under Medicare, notwithstanding the Charter’s guarantee of equality. The SCC decided in November 2004 that the matter of whether to cover the core healthcare needs of Canadians with autism under Medicare is entirely up to the legislatures.

The autism community has been lobbying provincial governments for years to address this huge gap in healthcare. For years they have also been asking the federal government to recognize a crisis across the country, demonstrate some leadership, convene a meeting with the provinces, put some money from 11 consecutive years of budget surpluses on the table, and negotiate a National Autism Strategy that would see autism treatment provided under Medicare pursuant to some national standards. The federal government has also been asked (though the tabling of petitions, etc.) to amend the Canada Health Act to include autism treatment in Medicare so that the provinces could no longer discriminate against those with autism.

At the time of the SCC decision the Paul Martin Liberals were in power. The fact is that they did nothing for autism. During that time many Conservative MPs attended autism rallies and press conferences on the Hill and used the autism cause to criticise the Liberals. Local Ottawa opposition Conservative MP, Pierre Poilievre, even wrote an article in The Hill Times in which he clearly stated that the Canada Health Act should be amended to include autism treatment in Medicare. However, once in power, the Tory Health Minister, Tony Clement, began the first nine months of his tenure by sending parents like me useless letters telling us that he was sorry our kids suffered from autism, but that it was not his business and entirely a provincial matter. How could he write that right after an election in which the Tories campaigned on a National Cancer Strategy? How can the jurisdiction argument be relevant for one medical problem and not another?

However, on November 21, 2006, just one day before a major autism rally on Parliament Hill, the Minister suddenly held a press conference and began by stating that “the autism situation is now so serious, that doing nothing is not an option”. Regrettably, that is exactly what he did. Clement announced a five-point autism plan that included a website, a symposium, and asking the Public Health Agency of Canada to consider whether they could maintain some surveillance of the autism situation. These measures are wholly inadequate and have accomplished nothing noteworthy.

Once in opposition, the Liberals suddenly saw the political value of using the autism file to score some points. Former Liberal Cabinet Minister Andy Scott tabled a Motion for the creation of a National Autism Strategy. The House of Commons passed Motion M-172 on December 5, 2006. However, Motions are not binding and they have done nothing to implement it. Not one cent was assigned to it in any subsequent budget.

Similarly, Liberal Shawn Murphy tabled a Private Members’ Bill to create a National Autism Strategy. If passed, this would have become law and forced the government to actually do something. Regrettably, the Tories and the Bloc ganged up to kill Bill C-304 on February 21, 2007 before it even made it to the Committee stage for review after second reading. In a show of two-faced hypocrisy, Pierre Poilievre MP was among those who voted against the Bill, which would have done precisely what he previously publicly wrote should be done to help those with autism.

During this time, the Senate Standing Committee on Social Affairs was holding hearings into the question of funding for the treatment of autism. Senator Jim Munson has been a leading advocate for Canadians with autism on the Hill and this inquiry was thanks to his efforts. On March 29, 2007 the Committee issued its report titled “Pay Now or Pay Later” in which it recommended the creation of a National Autism Strategy. When Parliament resumed after the summer recess the autism community waited to see what would be the Government’s response. On October 17, 2007 Clement’s response was tabled in the Senate. In a nutshell, he completely ignored the recommendations of the committee. The reply did not even include the words “National Autism Strategy”. The Conservative government will not do anything for Canadians with autism and they do not see it as being their role to demonstrate any leadership with the powers and resources at their disposal to help improve the lives of Canadians with autism or to address the discrimination in Medicare.

The NDP have several MPs who are sensitive to the plight of Canadians with autism. In particular, Peter Stoffer MP has been one of our greatest advocates on Parliament Hill for years. Stoffer has tabled numerous Bills in the House of Commons. Regrettably, they have not made it to debate. Similarly, while the NDP have talked a lot about a disability rights statute, to my knowledge they have not tabled or publicly circulated any draft Bill on the issue so far.

In the U.S. the federal government recently passed the “Combating Autism Act” which poured $1 billion into autism detection, treatment and research. During his nomination acceptance speech, John McCain actually mentioned autism. In Canada, it is a different story as most politicians would rather adopt the ostrich approach to dealing with autism.

During this election, please ask the candidates in your riding whether they are prepared to commit to moving forward with the development and implementation of a meaningful National Autism Strategy that would finally see autism treatment covered by Medicare in every province and whether they would be prepared to resort to legislation ensure that it happens. Please ask them to put their position in writing. Then make their replies public and let everyone know where the candidates stand so voters can take it into account on election day. At least one autism organization has stated that it intends to be active in this election. If you want to contribute, contact Families for Early Autism Treatment (FEAT) of B.C. at https://www.featbc.org.

What happens to Canadians with disabilities is important. If the weakest and most vulnerable in our society can be manipulated, abused, abandoned and deprived of their equality rights, the strong and healthy should realize that it is just a matter of time before the same happens to them!
_________________________________________

[Debra Antifaev]

It would be an understatement to say our “Medicare for Autism Now!” fundraiser at Capone’s last Saturday was a success. Not only did we exceed our monetary target for the evening, it would be safe to say that over half the attendees did not have a child with autism. Fair-minded Canadians are starting to see that autism affects us all and the treatment for children with autism should be as available as any other medical treatment. Let’s hope the Federal policy changers are starting to notice too!
We had such a hard working team and such a successful drive we did not have enough room to display all of our generously donated silent auction gifts, so we have decided to raffle the remainder off at our “Medicare for autism now!” rally on October 4th at Eaglequest Golf Club. This way the generous donations will still go to the intended cause.
The election is at hand and this may be the last time we have all the FEAT and ASBC volunteers working together to effect policy change in this manner. We have to make the politicians see that this is not a Provincial issue that they can ignore. It is a National election issue that could influence their ability to win or hold power. Please remember that prior to 1999 a select few, who were sworn to secrecy, did receive limited funding. It was snatched away. Unless Autism treatment funding is enshrined in the HealthCare Act you could lose the paltry amount of money you receive at any time.
It is incumbent on EVERY parent or relative of a child with autism, who is not receiving adequate funding, to ATTEND this rally. This is a minimum requirement. You will not be asked to volunteer. You will only be asked to give up two hours of your time to stand with your peers, listen to the speeches and support each other.
.
Medicare for Autism NOW!” Rally!
Eaglequest Golf Club
7778 – 152nd Street, Surrey BC
Saturday October 4th, 2008

Do it for the kids!

[Author]

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