[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

[Monika Lange]

I just sent this to Macleans as a letter to the editor:
I cannot pick up on any logic in Premier McGuinty’s statement: "The wait list is getting longer because the province is putting more money into providing therapy for autistic children”. This statement defies logic as there is no link between the premise and the conclusion, other than they seem to contradict each other. It seems that Premier McGuinty cannot resist using a common strategic trick to drum up support for his position: the invention of a looming and ominous crisis, the “WAIT LIST CRISIS”. The next step is to say that unless we reduce autism funding, the wait lists will get longer. This is a transparent attempt to create an alarming scenario – conveniently tied to the solution – and prophesy that if the proposed solution fails to be adopted, then ‘x’ will happen, with ‘x’ amounting to some sort of catastrophic outcome. The creation of a crisis is a tool that can be used where one really does not exist in order to further interests, and we need to be savvy to this. It simply does not follow that more autism funding causes longer waitlists, unless, of course, McGuinty is referring to the waitlist for ABA consultants (which was always a problem even before half-assed government funding grudgingly kicked in – when parents got nada-zip-zilch-zero). The short response to McGuinty’s circular argument is to simply call it what it is… idiotic.

[Andrew Kavchak]

Hi Folks,
I just sent the message below to the heads of the Autism Society of Canada and the Autism Society of Ontario. If anyone understands Premier McGuilty's logic, please explain it for us.
Thanks.
Andrew Kavchak
______________________________

Dear ASC and ASO,

As you should know by now, there have been a few recent articles and press releases about the growing wait list for autism treatment in Ontairo. In the recent issue of Macleans.ca the Premier of Ontario is quoted as saying:

"The wait list is getting longer because the province is putting more money into providing therapy for autistic children, said Premier Dalton McGuinty."
http://www.macleans.ca/article.jsp?content=n042946A

Would you please consider writing to Premier McGuinty and asking him to explain his Orwellian logic. What the Premier said is unbelievable. Using the Premier's logic, we may see a reduction of program funds to reduce waiting lists, and eventually the cancellation of the programs as a solution to the wait lists crisis.

This is another fine example of provincial negligence and irresponsibility when dealing with the autism crisis in Canada and it is utterly sickening. Clearly, we need some federal leadership in developing a National Autism Strategy. Please consider writing to Health Minister Clement using this growing waiting list situation and the Premier's ostrich approach as an example of the need for urgent movement.

Thank you for all you do for the autism community.

Andrew Kavchak
Parent of a child with autism
Ottawa, Ontario

[Isaac]

Hello everyone,

On the topic of the “autism tracking” research questionnaire I discussed recently in the FEAT-BC forum (survey at –> http://www.asdsurveillance.ca), some salient commentary came across my desk today regarding the severely flawed nature of this survey. Part of the commentary states:

"If [the Public Health Agency of Canada] thinks that the survey on http://www.asdsurveillance.ca is acceptable to those who understand and do surveillance for a living…it is not! Stop wasting TIME and MONEY and get serious."

I think it’s important to share the entirety of the message with our group. This is a very worthy read, in my view.

Isaac

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Over the past few months, the Public Health Agency of Canada has been working with the Autism Society Canada, the Autism Spectrum Disorders-Canadian American Research Consortium (ASD-CARC) and the Canadian Autism Intervention Research Network (CAIRN) to consult with individuals, families, doctors and ASD researchers to see what can be done to track ASDs in Canada. These groups are asking members of the autism community, individuals with ASD, family members and other caregivers, doctors and service providers who diagnose and treat ASD, school teachers and early childhood educators, adult service providers, those involved in policy and program development, and researchers to fill out a questionnaire on-line at http://www.asdsurveillance.ca

Unfortunately this is not how Surveillance or Policy works in PHAC. The questionnaire on line is poorly designed and is not relevant to the issues identified in core surveillance programs, which include: Incidence of the disorder (how many new cases of autism are being identified), prevalence (how may cases exist at the present time), time trends (how does the incidence and prevalence of autism changes over time), demographics (age, sex, geographic location), patient history (date of diagnosis, diagnostic tests, developmental test scores, changes in severity over time), Treatment history (date treatment started, types of treatment, treatment outcomes, costs of treatment), time-space clustering of the disorder.

It appears that the survey was thrown together by people not trained in surveillance methods. Why does PHAC not use their abundance of Epidemiologists, Statisticians, and Research Scientists to develop a proper tracking program similar to other PHAC tracking programs (cancer, diabetes, enteric infections, sexually transmitted diseases)? Why is PHAC giving money to outside Autism groups when they have people trained within the Agency who are experts in the tracking of diseases/disorders? It appears that money is being thrown around to give "the appearance" that something is being done. If PHAC thinks that the survey on http://www.asdsurveillance.ca is acceptable to those who understand and do surveillance for a living…it is not! Stop wasting TIME and MONEY and get serious. Develop a Division of Autism within PHAC. Hire trained Statisticians, Epidemiologists, Research Scientists, Policy Analysts and Community Medicine experts to develop a program for Autism including surveillance, policy, guidelines, program evaluation and strategic planning (similar to their Cancer, Cardiovascular Disease, Mental Health divisions). If PHAC is serious then a National Strategy for Autism needs to be developed into a Memorandum to Cabinet. Writers and researchers need to be hired to develop the Memorandum and Health Minister Clement needs to present the Strategy to the house in September, 2008. Time is running out. This survey is unacceptable by research and political standards and does not collect the information needed for a National Strategy for Autism.

Please fill out the questionnaire and in the blank spaces where you can write, please write your concerns. Also write to Health Minister Clement and your MP to let them know that this is unacceptable.

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[Andrew Kavchak]

Well, you just had to know that someone was going to reply…
________________________
April 24, 2008

THE DAILY GLEANER (FREDERICTON)
PAGE: C8

Letters to the editor | Cerebral palsy letter was rude

This is a response to the letter to the editor about children with cerebral palsy in The Daily Gleaner on Wednesday, April 23.

I am a parent of an autistic child and I found it very rude to have compared these children and their circumstances.

Every child with a disability, whether it be diabetes, epilepsy, autism, cerebral palsy etc., struggle to get a diagnoses, and help.

Everyday is a struggle with any child needing help. We, as parents, need to rely on ourselves to be our child's advocate.

If we are not, no one else will.

We, as parents of autistic children, fight on daily basis for diagnoses, treatment, resources, funding. We write letters daily to our MLAs , newspapers, anyone who will listen to us. Yes, there is a need for all children with a disability to receive more help. It was unfair of you to compare the two. We, as parents, teacher, caregivers, volunteers, and heath care professionals, need to stick together and fight for the rights of all our children with a disability.

Melanie Watt
Fredericton

[Debra Antifaev]

Andrew is so right,"…it ain't rudeness…" this is what some parents truly believe OR have been told by some public service employees. I have heard from parents of children with other disabilities that Autism funding is responsible for their service cuts. There is a very successful Divide and Conquer policy in this country and we all are guilty of letting it blossom.
I can't count how many times I have heard someone say they are not going to attend a function because "so and so" will be there.
I can't count how many times I have heard the parents of newly diagnosed children say that if we (the old guard)had just been a little nicer 10 years ago we would have Autism funding now.
I can't count how many times I have heard parents of special needs children (at school) say that they have had their child's SEA time cut because of children with Autism
And, finally, I can't count how many times I have heard parents state that the NDP would do a better job because they are "for the little and poor working people"
The above is all untrue, parents, and no-one should be avoiding a rally or workshop that has the potential to help their child. To quote the buzz words from the Democratic primaries….."Together we can!"
We do NOT have to all have the same opinions, politics or beliefs but we DO have to all stand together for OUR special needs children.
Keep your eyes on the prize….

[Andrew Kavchak]

When Canadians use autism policies, programs and services as a model aspire to, you know we are in trouble! A doctor? Under Medicare you mean? What a shame that people continue to be so terribly misinformed! It ain't rudeness, just ignorance of the truth.
____________

April 23, 2008

THE DAILY GLEANER (FREDERICTON)
PAGE: B6
Letters | Cerebral palsy can be a huge challenge

I am writing this letter in hope that other parents in Fredericton will speak out, too, and demand help for our children.

I have a beautiful two-year-old daughter who was affected with cerebral palsy at birth.

Children are supposed to be our hope for the future but yet the children, who have disabilities, are left behind.

In no way am I trying to be rude, but if there was half the help out there for kids with cp as there is autism, perhaps, my daughter would get the help she so deserves and needs.

As a parent, you want your child to grow and be all that he or she can be but with such a huge obstacle in front of you it, at times, seems impossible.

I wish so hard at night that there would just be something, anything, such as a new doctor who might come to town to help these precious kids and give them the chance they deserve.

Nobody can imagine the pain of looking at your child and knowing there is nothing you can do, unless you've been in the situation.

Maybe it's a hopeless dream but I know I am not giving up and I will fight for my daughter until the day I leave this world.

I need others to step up and demand the same.

We can't do it alone.

But with the more voices which speak out we may just get us the support we all need.

Brittini Sowers
Fredericton

[Andrew Kavchak]

Here is another message I received on the topic…
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What do governments need to track to better understand Autism Spectrum Disorders (ASDs), and improve policy, programs and services for individuals and their families? Tell us now at http://www.asdsurveillance.ca.

Tracking autism – We want to hear from you!

In November 2006, the Government of Canada committed to consulting with stakeholders about the feasibility of developing surveillance on ASDs in Canada. The Public Health Agency of Canada is now in the process of considering what information would be important to track about ASDs and how this information could be collected.

Over the past few months, the Public Health Agency of Canada has been working with Autism Society Canada, the Autism Spectrum Disorders-Canadian American Research Consortium (ASD-CARC) and the Canadian Autism Intervention Research Network (CAIRN) to consult with individuals, families, doctors and ASD researchers to see what can be done to track ASDs in Canada. Now we need your help.

Tell us what you think we should be tracking

Together we have developed an on-line survey to gather input on what information about ASDs is important to track among the group of Canadians with ASDs.

We want to hear from all members of the ASD community (including Autism, Asperger’s Syndrome and Pervasive Developmental Disorders Not Otherwise Specified), – individuals with ASDs, family members and other caregivers, doctors and service providers who diagnose and treat those with ASDs, school teachers and early childhood educators, adult service providers, those involved in policy and program development, and researchers studying these conditions.

The survey should take no more than 10 minutes to complete, and all responses will be kept strictly confidential. The survey will be posted until May 20th at http://www.asdsurveillance.ca. But why wait? Go to the web site now. Tell us what information you think is important to track about ASDs. Help us plan a better future for all Canadians.

Adding the Questionnaire Link to Your Website

By posting a live link to http://www.asdsurveillance.ca on your website, the questionnaire will be available to a larger audience and more individuals will be able to use the internet-based consultation to share their views. Title: Tracking ASDs in Canada:http://www.asdsurveillance.ca

(See attached file: Surveillance des TSA au Canada.jpg – tracking ASDs in Canada logo v2.jpg)

Keep in mind

We want to hear from all members of the ASD community (including Autism, Asperger’s Syndrome and Pervasive Developmental Disorders Not Otherwise Specified), – individuals with ASD, family members and other caregivers, doctors and service providers who diagnose and treat ASD, school teachers and early childhood educators, adult service providers, those involved in policy and program development, and researchers studying these conditions. http://www.asdsurveillance.ca

In an attempt to reach as many ASD stakeholders as possible, we are asking for your help. Please forward this questionnaire link to anyone you think might be interested: http://www.asdsurveillance.ca

[Debra Antifaev]

I have just completed the survey and would like to add my voice to Isaac's in encouraging people to fill it out. It's one of those annoying types with the different "levels" of importance place on each question……very hard to pour all your feelings into those!!!
There are also two comment sections…..so pour away in there…..
I think a few people are finally starting to listen and we can probably attribute that to Jean's "March to the Capital" and keeping Autism forefront in everyone's mind……you go girl!!

[Isaac]

Courtesy of the Autism Society of B.C, I’d like to share a message with the group (a note from the President of the Autism Society of Canada). It references a request for family participation in an on-line survey. I encourage everyone to take a few moments to review, and hopefully fill out as I did, the survey form at http://www.asdsurveillance.ca.

We want B.C. voices to be well represented!

The Autism Society of Canada has apparently partnered with the Public Health Agency of Canada, to conduct a survey that tracks the incidence of Autism Spectrum Disorder in Canada (among other issues). This seems like a good thing, I think.

The message from Christine Dade, President of the ASC, is below. I filled out the survey form tonight and sent it in. My supplementary comments on the survey form are reproduced at the bottom of this post, for those who may be interested on my thoughts on the topic.

********************************************
By Christine Dade, ASC:

Over the past few months, the Public Health Agency of Canada
has been working with Autism Society Canada, the Autism
Spectrum Disorders-Canadian American Research Consortium
(ASD-CARC) and the Canadian Autism Intervention Research
Network (CAIRN) to consult with individuals, families,
doctors and ASD researchers to see what can be done to track
ASDs in Canada. Now we need your help.

Tell us what you think we should be tracking . Together we
have developed an on-line survey to gather input on what
information about ASDs is important to track among the group of Canadians with ASDs.

We want to hear from all members of the ASD community …

What do governments need to track to better understand
Autism Spectrum Disorders (ASDs), and improve policy,
programs and services for individuals and their families?
Tell us now at http://www.asdsurveillance.ca. The survey should take no more than 10 minutes to complete.

Thank you
Christine Dade
President, ASC
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Comments by Isaac Tamir (RE: Canada Health Agency tracking of ASD):

It's certainly important to track autism incidence in Canada, but I would submit that it’s also important to track the number of Canadian health policy analysts that are even REMOTELY thinking about having a conversation on how to include medically necessary autism treatment for children in Medicare i.e., universal health care access vs. Visa-card autism treatment (the current standard in Canada).

Of course, the number of health policy folks in Canada looking into the systemic side of this health policy disaster approaches zero; that’s the biggest problem. The elephant in the room is obvious. We have a devastating neurological disorder that is diagnosed by health professionals, tracked by the Public Health Agency of Canada (hopefully soon), but where the treatment of same is concerned, the children remain WHOLLY IGNORED by all of the publicly funded Medicare programs across Canada. That’s clearly an intolerable situation, if the Canadian social contract is supposed to actually mean something.

Is autism a health issue? Is it an education issue? Is it a social services issue? It’s important to figure this out, as a nation, because as things stand now, all public policy vis-à-vis children afflicted with autism is organized around the notion that autism is the latter — a social services issue. This is a huge problem, that a recognized health issue stubbornly remains under the purview of the child protection department for the purpose of vital autism treatment that they are ill-equipped to deliver and can hardly understand.

Tracking ASD is important, yes, but tracking "who pays the freight" to treat this disorder is important too. For my daughter’s core health need (autism treatment) the heavy "freight" bill has been paid by me and my wife, for many years. The privately funded autism health care tab over here runs well over $500,000 to date.

No government agency is 'tracking' that travesty, I’m quite certain.

The financial demise of thousands of Canadian families, due to the nature of catastrophic autism health care costs, should also be a topic worthy of tracking by federal government agencies, as well as the incidence of autism and all the other data.

Isaac

[Andrew Kavchak]

Three to one.

On World Autism Day, two statements were made in the House of Commons.

Yesterday was World Malaria Day. Six statements were made in the House of Commons.

Interesting…How many Canadians have the misfortune of contracting malaria in this country?

[Author]

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