[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]

The Hill Times
Monday, March 5, 2007.
Editorial Page, p. 8.

Page 8 has a picture of MP Pierre Poilievre with a caption that reads: "He's a government man now: Conservative MP Pierre Poilievre, above, and the governing Tories voted against Bill C-304, turning their backs on disabled children, says letter-writer Andrew Kavchak."

Letter to the Editor

Conservative Hypocrisy on autism and Bill C-304

It was with profound disappointment that families with autistic children across Canada watched the Conservatives gang up with the Bloc on February 21, 2007 to defeat Bill C-304 after second reading and before a House committee even had a chance to examine the Bill's contents.

The Bill would have created a National Autism Strategy and included autism treatment in Medicare which is currently a huge gap in our public health insurance system.

It is difficult to understand Conservative Party schizophrenia on the autism file. In the last election they ran on healthcare and childcare. This gave parents of autistic children hope since their kids were getting neither healthcare nor appropriate childcare.

Moreover, just two months ago the Conservatives voted in support of Motion M-172 to create a National Autism Strategy. However, motions are not binding.

Bill C-304 would have required the Health Minister to negotiate a strategy with his provincial counterparts and table the plan in the House. That won't happen now. Are national strategies only reserved for conditions which the provinces already treat? What kind of leadership is that?

Perhaps the Conservative Party's approach is best understood by the writings and actions of Pierre Poilievre. When Mr. Poilievre was in opposition he was approached by a number of families with autistic kids who pleaded for assistance. He attended and spoke at an autism rally and press conference. His position was stated in an op-ed article of his that was published with his picture in The Hill Times on March 21, 2005 with the title "Birth of a child shouldn't become healthcare roulette: exclusion of autism treatment from Canada's medicare".

After accusing the then governing Liberals of "a new and shameful low in Liberal hypocrisy" for their intervention at the Supreme Court of Canada in the Auton case, he went on to say: "So what can be done? We must amend the Health Act so medicare will include effective, scientifically-validated autism treatment for children with autism".

Now that he voted against Bill C-304, shall we call this turning of their backs on disabled children "a new and shameful low in Conservative hypocrisy"?

Andrew Kavchak,
Ottawa, Ont.

[Andrew Kavchak]

MPs duck the challenge of autism; Shawn Murphy's failed bill may have raised awareness. But families of autistic children need support.

The Guardian(Charlottetown)

Mar 5, 2007

Editorial

It's unfortunate that the House of Commons last week defeated the bill to create a national autism strategy. But the debate surrounding it has raised awareness of autism and this could be an important step toward eventually achieving such a strategy.

For the last year, Charlottetown MP Shawn Murphy has been championing the call for a national strategy to improve autism treatment and services. Last week, he introduced a private member's bill advocating such a strategy, but it was defeated 155-113. Although the bill won't proceed, the vote itself is noteworthy. Obviously many members of Parliament – 113 to be precise – share Murphy's concern about the lack of services for people with autism, and the inequities in the services that are available.

There's good reason for this concern. As Murphy said himself after the vote was defeated, research released by the U.S. Centres for Disease Control shows that one in every 150 children is affected by autism spectrum disorder, a phenomenon that's generating a groundswell of concern among scientists, health-care workers, educators and politicians. Governments can't dismiss this.

Here in P.E.I., the concern about autism services has most recently been expressed before the provincial Human Rights Commission by parents who say the support and services for Islanders with autism fall far short of what's needed. This concern has been echoed in letters to the editor, including one from a grandmother of an autistic child who put the consequences in plain terms: waiting lists and a lack of therapists mean children with autism aren't diagnosed and treated as early as they should be.

This has to change. If the statistics on autism released by the U.S. Centres for Disease Control reflect the reality, then governments at all levels must put the necessary resources toward helping those with autism manage and live with their condition. We need a national strategy that would, in co-operation with the provinces, map out an approach to diagnosis and treatment and provide the resources needed to deliver these.

The attempt to create that strategy has been set aside by Parliament for now. But the significant number of MPs who voted for Mr. Murphy's bill should give hope to those striving for improvements. They've caught the attention of our national decision-makers. They now have to be nudged into action.

[Dorothy Ray]

A little behind but I thought I'd share a positive response:

Dear Dorothy,

Thank you very much for your e-mail, and please accept my apologies for
the delay in my reply.

I am sorry to hear about the difficulties you are facing funding
treatment for your sons, and yours is a story I have unfortunately heard
many times before. There are so many challenges faced by parents of
autistic children, and this burden is increased by discrepancies in the
level of support provided by provincial governments. I believe that the
federal government must create an even playing field, and you are right
that many other conditions have a national strategy. I agree that a
National Autism Strategy is long overdue.

I support Bill C-304 and I will vote in favour of the bill when it comes
before the House.

I appreciate you contacting me about an issue that is so close to your
own heart. Please feel free to contact me in the future.

Best wishes,
Dawn

Dawn Black, MP
New Westminster-Coquitlam
T: 613-947-4455
F: 613-947-4458

[Andrew Kavchak]

Thanks Nicole for sharing that. Please send Mr. Moore a copy of the FEAT BC annotation to Mike Lake's letter. MPs who send that kind of reply should be asked whether they have any MPs with children suffering from cancer who were used by the party to oppose the Party's National Cancer Strategy and whether the provinces also expressed opposition to the creation of the National Cancer Strategy, National Heart Health Strategy, etc…
Thanks again for sharing that.
I heard that Minister Clement had a press conference today and one of the Parliamentary press gallery reporters asked him about the defeat of Bill C-304. "It is provincial" was his response. It makes you wonder – what for Health Accords? What for a public health agency of Canada? What for a federal Department of Health? etc.

[Nicole Harvey]

Just thought you all may want to see this,

Mr. Razzell:

Thank you for taking the time to write in support of Bill C-304.

I have had the opportunity to meet with a number of parents and therapists of Autism Spectrum Disorder children in the riding and appreciate the special challenges, both personal and financial, that families with ASD children must face.

While I am very sympathetic to the spirit expressed in Bill C-304, this private member’s bill treads heavily into provincial jurisdiction. Provinces and territories are responsible for the administration and delivery of health care services and the administration of the publicly funded health care insurance plans.

The Canada Health Act requires that medically necessary hospital and physician services be covered by provincial/territorial health care insurance plans in order to receive the full amount of federal funding under the Canada Health Transfer. There are many health care services that fall outside of the scope of the Act because they are provided outside hospitals and by non-physicians. For these services, it is up to provincial and territorial governments to decide whether or not to cover them. Services related to the treatment of ASDs, including ABA/IBI services, fall within this class of services.

Last fall federal Minister of Health, the Honourable Tony Clement, has announced a package of initiatives to improve knowledge and research on Autism Spectrum Disorders (ASD) to help individuals and families facing the challenges of ASD.

We already support research on ASD through the Canadian Institutes of Health Research (CIHR), which has invested nearly $15 million since 2000 – and knowledge dissemination through the Public Health Agency of Canada's (PHAC) investments in the Centres of Excellence for Children's Well-Being.

In addition to those measures, the federal government has committed to:

Sponsor an ASD stakeholder symposium in 2007 to further the development of ASD knowledge and dissemination among health care professionals, researchers, community groups, teachers, individuals and family members;
Begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD;
Launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research;
Create a dedicated page on the Health Canada website to guide the public to ASD information available through the Canadian Health Network and other resources; and
Designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level.

We are confident that these initiatives will help to better address the many challenges individuals with Autism Spectrum Disorder and their families are facing.

In closing, I have enclosed a copy of the statement made by my colleague MP Mike Lake last week. Mr. Lake knows first hand the heartache and challenges faced by Canadian parents seeking the best possible treatment for their autistic child.

Once again, thank you for taking the time to write on this important issue.

Sincerely,

James Moore MP

Port Moody-Westwood-Port Coquitlam
Encl (1)

http://www2.parl.gc.ca/housechamberbusiness/ChamberPublicationIndexSearch.aspx?retPublicationDocumentId=2728165&retKeyword=mike+lake&retDateFrom=&retDateTo=&retParliament=Parl0Ses0&retSortBy=Publication&retMaxResults=10&retSourceDebates=True&retSourceCommitteeEvidence=False&retCommitteeAcronymList=&retBooleanSearch=False&Language=E&Mode=1#Para445271

Autism

Mr. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):

Mr. Speaker, today I need to address an issue of political gamesmanship taken too far.

My 11-year-old son, Jaden, has autism. Bill C-304 purports to help families struggling financially when a child is diagnosed with autism. However, this bill is simply a political manipulation.

The Liberal member knows full well that this is a bill he could never have supported when he was in government. If this bill were to pass, autism would be the one and only disease or disorder named in the Canada Health Act. Cancer is not named. Neither is diabetes nor cardiovascular disease.

The member knows that only the provinces can act on the provision of ABA treatment if we are to maintain the integrity of the Canada Health Act. Why in most cases are the provinces not taking urgent action? That is a question to which voters should demand an answer from their provincial governments.

What the member does not get is that this is not an appropriate wedge issue to exploit for political gain. These are real people with real challenges who are desperate for real solutions. Bill C-304 does nothing but give false hope to families who deserve more than to be treated as pawns in a political game.

——————————————————————————–

From: Derek Razzell [mailto:derekrazzell696@hotmail.com]
Sent: February 18, 2007 4:00 PM
To: Moore, James – M.P.
Subject: Bill C-304

Dear Mr. James Moore,

I am writing to urge you to vote in support of Bill C-304 when the
Bill is subject to a vote in the House of Commons. Bill C-304, the
"National Strategy for the Treatment of Autism Act" is of critical
importance to families with members who suffer from autism. The
Centres for Disease Control in the U.S. just recently reported that
the prevalence rates of Autism Spectrum Disorders have increased to 1
in 150. By any standard this is a national public health crisis. Yet,
not one province offers the core healthcare treatment for autism under
Medicare and there is no National Autism Strategy to deal with this
growing epidemic. The government has recently made announcements of a
National Cancer Strategy, National Heart Health Strategy, National
Spinal Cord Rehabilitation Strategy, etc. Although the federal
government announced some autism consultation initiatives in November
2006 and supported a motion for a National Autism Strategy in December
2006, these are non-binding and largely symbolic window dressing.
Words are not enough. We need action. Please vote to refer Bill C-304
to the next stage in the approval process and let the Committee
examine the Bill and do its work. Please urge your fellow MPs to
support the Bill. Providing these children with assistance in their development leads to them leading productive and normal lives.
The cost of not doing this is a lifetime of dependence on the taxpayers.
The quality of life in the future for my child depends on this bill and I am not alone.

Thank you,
Derek Razzell

[Isaac]

Hello everyone,

On February 21, 2007, the Conservative Government of Canada chose to kill a Bill in Parliament that would have, at long last, brought the provinces and the Federal Government together in meaningful consultation to craft a National Autism Strategy which would have effectively dealt with the long-neglected, runaway autism crisis in Canada. The Conservatives killed Bill C-304, even before a parliamentary committee could properly study the merits of the proposed legislation. In my view, this is very poor governance.

In stark contrast to the seemingly permanent, ingrained autism healthcare neglect in Ottawa, we can only marvel at the U.S. approach to autism, where their federal government recently approved a new law entitled the 'Combating Autism Act', with an appropriated budget of close to US$1,000,000,000 (one billion dollars), designated for better autism treatment and research. In Canada, what we had in play for our children at the same time was Bill C-304. This proposed legislation could have fixed the anachronism that is the Canada Health Act's systemic exclusion from Medicare of all children afflicted with autism.

With this information as background, I would like to direct the attention of our group to Alberta MP Mike Lake, who issued a "media statement" (at the behest of federal government spin doctors, we think) on the day of the important vote on Bill C-304, explaining why he, as the father of a child with autism, was nevertheless compelled to quash proposed federal legislation that would have significantly improved the lives of children afflicted with autism across all of Canada. Notably, Bill C-304's healthcare legislation would have helped children with autism in provinces that are FAR less fortunate than Alberta, where the provincial government has provided publicly funded autism treatment to families, such as Mike Lake's, for many years.

FEAT of BC has issued a response to Ottawa's ongoing refusal to provide autism health care under Medicare for children; an analysis of why the Conservatives and MP Mike Lake were wrong in killing Bill C-304 is at this address:

–> https://featbc.org/downloads/FEATBC_release_02_26_07.pdf

[Sam Yassine]

Hello

Just a thought to keep in mind.

Liberals and NDPs are on record now that they both support Medicare for autism (they both voted in favor of Bill C-304). This is a fact that no
one can change and it is your achivement that you should be proud of.

Regardless of what Conservatives, Blockquebcois and their Lapdogs think, Medicare for autism will continue to be a focus.

Our health care is clearly discriminatory when it comes to autism.

All we need to do now is to pressure onservatives to support Medicare for autism and commit to it in writing.

We owe it to children and future generations.

Cheers
Sam Yassine
Ottawa

[Isaac]

Failure of autism bill disappoints parents

By Tracy Holmes
Staff Reporter
Feb 23 2007

Altering act would threaten health care: MP

The Conservatives will pay politically for quashing a proposal to include autism treatment in the Canada Health Act, parents warn.

“We know who they are, we know what ridings they’re in, and we’ll be watching,” Jean Lewis, director of B.C. Families for Early Autism Treatment, said Thursday.

“There’s a political price for this.”

Lewis was responding to results of Wednesday’s 155-113 vote against Bill C-304. The bill, introduced last spring by Liberal MP Shawn Murphy, called for development of a national strategy for the treatment of autism, and to amend the Canada Health Act to cover two forms of treatment: applied behavioural analysis and intensive behavioural intervention.

Parents have fought for years to have cost of the pricey treatments – proven successful in 40 per cent of autistic children – covered.

South Surrey-White Rock-Cloverdale Conservative MP Russ Hiebert said Thursday he could not support the “flawed” bill.

Adding autism to the Canada Health Act would undermine integrity of the Act and threaten the health care system, Hiebert wrote in an email to The Peace Arch News.

“Canada’s Constitution clearly indicates that the provinces alone are responsible for deciding what medical services to fund,” he wrote.

“This is why no disorders or diseases are named in the Canada Health Act – cancer, diabetes, cardiovascular disease, Downs Syndrome are not named, and neither is autism.

“I remain firmly committed to the effort to better understand and treat autism, but Bill C-304 would not have achieved this goal.”

Lewis disagreed, accusing Hiebert of voting against the country’s most disabled residents.

She noted treatment for the other conditions Hiebert listed is already covered.

South Surrey parent Debra Antifaev noted after the vote that even removal of an ingrown toenail is covered by medical.

“Why deny people treatment if you’ve got something that works most of the time?” she said.

Lewis said: “The only solution to a health care crisis is to have it dealt with, to put treatment into medicare.

“The U.S. have allocated $1 billion unanimously to the treatment, education and research of the combat and struggle of autism. In this country, we’re doing nothing. Shame.”

Hiebert said he fully supports “everything that can be done to help those suffering from autism,” pointing to his backing late last year of a motion by Liberal MP Andy Scott to create a national autism strategy. Hiebert proposed amendments to include additional funding for research into autism.

Parents at the time described the plan as “a slap in the face” that did nothing to address providing treatment. Antifaev Thursday maintained immediate action is necessary.

“We’ve done a huge study. Let’s implement the best treatment to date, and then keep studying,” she said.

[Isaac]

Hello everyone,

Here's the update on Bill C-304 (an Act to include children with autism in Medicare and create a National Autism Strategy).

With the exception of Liberal Tom Wappel (who voted against the Bill), all MPs present in the House voted along party lines.

Please click on this link –> https://featbc.org/downloads/Bill_C304_Vote.html, to see how your MP voted on Bill C-304 and how many times (or whether) he/she tabled the autism petition in the House of Commons, which asks that children afflicted with autism be rightly included in Canada's Medicare.

What's quite extraordinary about the stats is that the MP who has tabled the autism petition in Parliament the MOST (10 times! Mark Warawa, Langley BC) actually voted AGAINST Bill C-304, which would have precisely achieved what the 10 petitions he tabled had asked of government! How is it that the character of a man can so profoundly change from the time he is a member of the Opposition, to the time he joins the heady realm of government, as Parliamentary Secretary to a Minister?

In a contest between voting one's principles or getting summarily tossed out of cabinet, clearly cognitive dissonance trumps the dusty concept of morality — it's a relative notion. That's what's wrong with our parliamentary system folks: if your MP is Conservative, he or she is wholly owned by the current Prime Minister (you just THINK your MP actually works for you).

Please note when reading the table linked above that the term "Paired" means either the MP was traveling outside the country and had arranged for a member of an opposing member to sit out, or that the MP had been ordered by his or her party Whip to sit out of the vote. In this case, it would appear that the pairs of government and opposing members would have all voted against the bill.

Isaac

[Andrew Kavchak]

Costly wait
The Ottawa Citizen
Feb 23, 2007

Page: A13
Byline: Andrew Kavchak

Thanks to the Citizen for describing the hopelessly inadequate resources of our children treatment system for autism. The wait times to see a specialist and get a diagnosis are equally outrageous. My family waited more than a year after approaching the Ottawa Children's Treatment Centre before a specialist gave our son a diagnosis of autism. We waited 15 more months to get financial assistance for treatment. We had no option but resort to the private sector at tremendous expense.

MP Shawn Murphy's private member's bill would have addressed the problem by requiring the federal health minister to meet with his provincial counterparts and develop a national autism strategy. But on Wednesday night, the Conservatives teamed up with the Bloc Quebecois to kill the bill. Disabled children with autism and their families know they cannot count on the provincial government for timely or adequate autism treatment. Now we know the federal government won't provide leadership.

Andrew Kavchak, Ottawa

_________________________

Island MP's autism strategy bill defeated; Shawn Murphy says private member's bill raised attention about need for action
The Guardian(Charlottetown)
Feb 23, 2007

Page: A4
Section: The Province

Charlottetown MP Shawn Murphy's private member's bill which would have required the government to produce a national strategy to improve autism treatment across the country has been defeated.

Bill-304 was defeated by a vote of 155-113.

In expressing his disappointment, Murphy said the inequalities in the availability of autism treatment affect families in every Canadian community and it's time the issue received the attention it deserves from the federal government.

Nevertheless, Murphy said C-304 has played an important role in raising awareness about the urgent need for federal governmental action to address the availability of autism treatments.

"Across the country, the coverage of autism treatments under Medicare differs greatly from province to province," he said. "Autistic children and their families in every province and territory deserve the same access to treatment through the health-care system that is available to rich provinces like Alberta. We will continue to lobby the government to develop a national autism strategy to ensure that happens."

Research released this month by the U.S. Centre for Disease Control shows that as many as one in every 150 children is affected by Autism Spectrum Disorder. The Island MP said despite this, many provinces provide little or no funding for expensive treatments like Applied Behavioural Analysis and Intensive Behavioural Intervention.

___________________________

[Author]

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