[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

[Barbara Rodrigues]

Hi Guys:

The Province has a big letter and opinion on Autism/Auton today Ursula Lee's great letter is in there(awesome exposure!). The Sun printed another parent letter – The Globe & Mail has a letter from a lawyer whose sister is handicapped (not autistic) but they get the fact that what was done to our children has been done to all disabled/minority people. The National didn't have any letters (mind you I was just glancing through them all quickly at the store) so correct me if I am wrong

Our local paper remains quiet on the issue and no letters printed yet.

Just an update.

Barbara

[Justin Himmelright]

tracking the hits on the online petition, roughly 135 new signatures since this morning, 35 in the past 2 hours.

Justin

[Mike & Jean]

ATTENTION ALL PARENTS…..

When F.E.A.T. of B.C. was formed in British Columbia in 1996 our mission was to: ensure that children with autism had access to publically funded medically necessary treatment. To enjoy the same right to health care as every other Canadian child.

Let me assure you all that today our mission remains the same. We parents have been left alone to right this wrong.

We will continue the work until our children have what they deserve.

Planning the next steps is in the works and will be communicated in the near future. Right now however, each and every reader of this board should download the petition available at the home page. Get 25 signatures and send or deliver it to your MP.

"The only thing necessary for the triumph of
evil is for good men to do nothing."
– Edmund Burke

Jean Lewis,
Director, F.E.A.T. of B.C.

[Mike & Jean]

During the last week we have heard about the huge cost burden of providing our children treatment –

In BC there are approximately 4500 indivuals under the age of 19 who have autism based on the lastest census data and incidence rates

4500 times $60,000 = $270,000,000

This is not the 'billions and billions' I heard the AG reference last evening. Without even getting into the argument about whether everyone would spend $60,000 this puts the 'we cannot pay' argument into the light of day.

I recall Michael Campbell saying the other day our Prov Health budget was somewhere between $10-11 Billion.

If the budget were then to go from say $10.5 billion to $10.77 billion (assuming $60,000 for each of the 4500 children) that is an increase of 2.57%

Am I really supposed to believe anyone who says we either can't save or can't cover another 2.57%.

Try again, this argument is obviously not about money.

[Alan Campbell]

Hi all!

Is there a link somewhere to a downloadable petition that everyone from this site is using? My wife and I both work in the service industry and have, beyond friends and family, customers who are eager to sign on. We are anxious to get my hands on one that can be sent electronically and printed by friends and family who live across the country who are more than willing to get more signatures. We are more than willing to design one ourselves but as always there is power in numbers and if there is one that the bulk of the parents on this list are using we would like to use it.

Dubravka's "Attention to all Canadian Citizens" is awesome and has gotten all I have shown it to interested in signing. Thank You

Thank You All

Alan
Elizabeth's Dad

[Jenn Ralph]

Following is the hansard from Nov 23rd: FYI:

The Deputy Chair: Resuming debate, the hon. member for Nanaimo—Alberni.

Mr. James Lunney (Nanaimo—Alberni, CPC): Mr. Chair, it has been a long night for everybody. I am glad to be able to participate in this debate.

I want to bring up an issue that we started the day with today. It is a very important issue for quite a segment of our population. It has to do with the subject of autism.

This morning we had the Autism Society of Canada here. We had alarming statistics being brought forward. We have seen at least a tenfold increase in the last 10 years and in some areas the numbers are even a hundredfold and more. We know that autism used to be so rare and now in many classes there are two or three children with autism, at least in British Columbia where my wife is a counsellor in the elementary system. It is a huge problem.

The families of autistic children have of course suffered a great disappointment with the Supreme Court decision on treatment that has just come down. That particular treatment option deals with behavioural modification, a very intensive behavioural analysis. It costs about $50,000 to $60,000 per child.

More needs to be done to head this off early and intervene early so that we can prevent this catastrophe for families and for these children. That being said, I wanted to highlight that and ask the minister where the health ministry is going with this.

Just recently in the last weeks the New York senate commended and honoured Dr. Joan Fallon for a new study. It was the patenting of a process for early identification of these children and it involves a simple stool test. It has to do with pancreatic enzyme deficiency. This is very promising in the treatment of these children, with enzyme treatment improving their function.

What is the ministry doing to help head off this problem of autism? Are we doing something? Is there a strategy? Are we putting money through the CIHR or some other agency into identifying the cause of autism for these children and the appropriate treatment? By the way, Dr. Joan Fallon is a chiropractor. Along with the enzymatic treatment she does use manipulation of these kids as well. Is there a strategy and is something being planned?

Á (2350)

Hon. Ujjal Dosanjh: Mr. Chair, this is obviously again a very difficult issue. In health care we deal with difficult issues from time to time. I was in fact part of the government in British Columbia when the case that recently came before the Supreme Court was decided. The case originated in British Columbia. I believe I was the attorney general. I had to deal with that difficult issue then.

I have said that I am happy, prepared and willing to meet with the parliamentarians who are trying to argue for a national strategy on this issue, with Senator Munson and others from all political parties. I will be meeting with them. I will be listening to them. I am happy to actually listen to the provinces from across the country.

I spoke to a constituent of mine several weeks ago during one of my constituency days. He has a 12 year old or 13 year old autistic child. The man was in tears. There was not much I could do as a federal politician. These are provincial jurisdictions and the provinces and territories make difficult decisions and difficult choices.

But I am prepared to take a leadership role at least in terms of coordinating our response across the country and discussing what we collectively as leaders in different levels of government can do.

Mr. James Lunney: Mr. Chair, a lot of serious concerns have been raised about what is causing this escalating epidemic, really, of autism; that is probably not the right terminology, but the numbers are escalating unbelievably.

There are concerns about the repeated use of antibiotics for childhood ear infections. That may be a root cause. There are concerns about the vaccines that are administered, about the thimerosal or the mercury that is used in the vaccines. Some states in the U.S. have demanded that they start producing vaccines without mercury derivatives, which are highly neurotoxic.

I hope that there is someone, and why should it not be Canada, leading the world in actually addressing these issues, finding out if there is a root issue, doing some proper studies and making sure we get appropriate intervention for these children. Why should it not be Canada?

That being said, I want to go on to another issue that I believe is very important. We had a little talk today about health promotion and prevention by the member for Brampton—Springdale and the member for Dartmouth–Cole Harbour.

I want to say on the Food and Drugs Act, subsections 3(1) and 3(2) and schedule A, which continue to obstruct delivery of natural health products, that we understand the justice department has indicated that these sections are not constitutional, that they will not stand a constitutional challenge. There is a private member's bill that would change this.

The transition team asked for changes to this law. Is the minister prepared to acknowledge these sections are not constitutional and adopt the provisions of Bill C-420 to change the way we regulate natural health products?

Hon. Ujjal Dosanjh: Mr. Chair, I want to say I appreciate the member's concern about autism. He shared some of the statistics that he had with me on the plane ride here to Ottawa early this week.

On the issue that the member raises, I am not aware of the details and the constitutionality or not of the provisions that he speaks of. I will be happy to take a look at them and speak to him in the fullest possible way I can.

[Translation]

The Deputy Chair: It being 11:53 p.m., all the votes are deemed to have been reported, pursuant to Standing Order 81(4).

The Committee will rise, and I will now leave the chair.

Á (2355)

[Alan Campbell]

Hi all!

Is there a link somewhere to a downloadadble petition that everyone from this site is using? My wife and I both work in the service industry and have, beyond friends and family, customers who are eager to sign on. We are anxious to get my hands on one that can be sent electronically and printed by friends and family who live across the country who are more than willing to get more signatures. We are more than willing to design one ourselves but as always there is power in numbers and if there is one that the bulk of the parents on this list are using we would like to use it.

Dubravka's "Attention to all Canadian Citizens" is awesome and has gotten all I have shown it to interested in signing. Thank You

Thank You All

Alan
Elizabeth's Dad

[Andrew Kavchak]

Hi Folks,

A little more coverage about the autism petition being tabled is at:

http://www.oacrs.com/News/2004/November/Nov24.htm

Cheers!
Andrew (Ottawa)

[Monika Lange]

I got our story as the front page headline on my hometown newspaper (Kitimat Sentinel)- "Supreme Court decision engrages local mother". Regarding AG Plant, we absolutely have to cream him on his quoted responsibility to fund only "scientifically proven" treatment. What manipulative B.S. that he takes the phrase we've been throwing at him for at least a decade, then turns it around to imply ABA isn't proven. Lies Lies Lies.

[Laurie Guerra]

Andrew,
Could you please e-mail me privately with your e-mail address?

I am meeting with my MP tomorrow, Thursday, with 50 signatures on the petition. I am also the parent of a child that has reached near recovery and am on the board of directors at the ASBC.

Laurie Romey -laurieromey@shaw.ca

[Author]

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