[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]

Hello. Just wanted to share my poem I wrote. The Liberals cut Jeremy's funds back in September because he's over the age of 6. This poem is for not only all our younger children with autism whom we hope and pray will have a fighting chance at a future but for those lost souls with autism who never had that chance.

Barbara
Jeremy's Mom

Do You See Them?

Do you see them, Mr. Premier?
Do you see?
They're the adults and it's outing day
They're at the mall
Though where they are matters to no one –
Themselves – least of all.

They are in wheelchairs but they can walk
Maybe once some might have even talked
Now most no longer even try
Many no longer even bother to cry.

Do you see them, Mr. Premier?
Do you see?
They are adults now but children with autism they used to be
Their lives seem of so little value to us all
Why, they are only societies burdens
Not productive at all.

These days you cannot get any eye contact
Their smiles seem no longer real
Some are disfigured now . . .
From years of self abuse
Some are catatonic now . . .
From years of prescribed drug use.

Do you see them, Mr. Premier?
Do you see?
They have families. They are so very loved.
They lived at home before when they were young
But without treatment – they never learned
They were never given the skills nor the abilities, it just became too hard for everyone
Years ago, there was no alternative to this very sad outcome.

Please look at them, Mr. Premier
Please make sure you really understand
For more than 30 years of science and data tell us
That what you see here today
Well . . . it never had to be.

Do you see him, Mr. Premier?
Do you see?
The future I show you was to be my son's
My child's chilling destiny
But we have found Lovaas treatment
It will change this tragedy.

Years ago he was so lost
Never learned, nor smiled or laughed.
He was not yet two when he ceased eye contact
He pulled his hair, had a bald spot
He never slept, nor fed himself
Never played, just raged a lot.

Do you see him, Mr. Premier?
Do you see?
With treatment he is learning
He is so happy. He has a long way to go
But the road is so much brighter.
There are no institutions in this child's future.

You promised to help, Mr. Premier
You said you would give treatment to all
And we believed your words
Why you shook our hands
You smiled and looked us right in the eye
We never knew it was all a lie.

Do you see him, Mr. Premier?
Do you see?
Your government cut our funds
We had to scale back his therapy
His doctor's told you he would regress – they warned you of this
And I fought my very best.

Then, Mr. Premier, we pleaded –
We begged for you to care
Do you see his balding spot?
Do you see it there?
He's doing it again . . .
He's pulling out his hair . . .

Do you see him, Mr. Premier?
Do you see?
He is an adult now . . .and it's outing day . .

Barbara Rodrigues

[David Bridges]

My, my! Just look at all you vultures pouncing on someone with a different take on the issue! Take a valium, why don't you?

Take my comments, which so many of you found offensive, as a reminder that we're not all on the same bandwagon when it comes to other political issues. So, union sympathizers, left- (or right-)wingers, radicals and other miscreants – don't presume we're with you or that you speak for us. It's a heterogenous group.

I believe that landclaims settlements are not going to make it easier for governments to come up with money for our kids. I don't expect all of you to share that view. Too bad if you find it disturbing! Sometimes the truth hurts.

D

[Pete Stelmaschuk]

I thought I'd add this: as a parent of aboringinal children and an autistic son, the polictically correct term is ABORIGINAL. Most First Nations and Metis find the term INDIAN offensive.

[Deleted User]

David Bridges

As a parent of a child of aboriginal descent with autism, I find your post very disturbing.

In case you didn't know it……. ALL PEOPLE are "truly deserving" and need to be treated equally both with dignity and with respect….. whether they are "Indian" or autistic!

Dianne Villesèche
dvilleseche@yknet.ca
Sara’s Mom

[Deleted User]

Normally, I lurk on this list…however David you have inspired me to add something to your BC pot.

Again as a disclaimer opinions are like assholes everyone has one and this sir is only mine.

Firstly Avery as per usual you hit the point on the old head , which is ulitmately the children will win in court.
David you so kindly asked how Avery's comments had anything to do with the first posting regarding the clever idea of returning voting tabs
(make sure you send out your press release with a catching title and get some press on your idea)….
Firstly it does appear that David you have a great deal of hostility, anger whatever you want to call it, and perhaps rightly so. I deal with anger on a daily basis, but your quick to slam approach because you don't think the voter tabs deals with the larger issue, actually has you thinking inside the box rather than out.
EVERYONE including you Dave have a part to play in this. Not everyone is here to do the same thing but we all ultimately have the same goal in mind for our children, which again as Avery pointed out is universal access to medically necessary treatment.
When I deceided to file an Ontario Human Rights Claim I had SEVERAL lawyers tell me to forget it and not even waste my time ( which I sence is what you are telling the voter tab woman , even suggesting the ridiculous). Well Dave couldn't have been further from the truth.
The amount of Press I have sustained in Ontario for three months now for autism has been virtually unheard of before ( at least with regards to ABA). It has appeared week after week, radio , newspapers, TV…and guess where you are heading… Supreme Court of Canada…and guess where that is….OTTAWA Dave….and guess where people from OTTAWA reside Dave… you got it buddy … ONTARIO. Do I think I have helped your BC case? You bet my big white ••• I do ( thought I should point out I am not NORTH AMERICAN Indian)so you wouldn't mistakingly think I was getting money I wasn't entitled to).
So perhaps the voter tab woman's idea isn't BIG enough for what you want today. Let me ask you , what have you done , other than throw angry insults at people, to help your child today?
Your anger is justified. But not at the expense of a woman just trying to do what she feels she can for her kid. And news flash EVERY little thing adds up and helps….maybe not in Dave's world…but out here it does.
so again the quote…
opinions are like assholes, everyone has one…
but once in awhile its just an ••••••• with an opinion, right Dave?
Norrah Whitney
fight4aba@hotmail.com
aba4u@earthlink.net

[David Bridges]

Well, it all comes out of the same pot folks!

So if you're gonna bring seemingly unrelated issues into the picture, be prepared for a retort.

[Maureen St. Cyr]

Ow…Dave…please…I think you and Cory & Gary are saying the same thing, although you're a little more vociferous. And I really don't think we want to bring other government policy into our debates, do we? The point is not how much the government spends on anything else. The point isn't even how much they spend on their little friends who pass themselves off as "service providers". The point is our children have their constitutionally guaranteed right to equality under the statutes of the land, including the right to proper, bonafide medical care. I'd like to suggest we all keep focused on the issues that matter. The last thing we want to do is have anyone claiming that we want to take money away from other causes to support our own. We do not. And whether we agree or disagree with those causes is immaterial.

Personally, I find it rather ironic — as well as frustrating, sad, and ridiculous in the extreme — that the Liberals are hell-bound to keep the promises that mean NOTHING but cost lots of money, and they're just as determined to violate the promises to our children which will save the province millions if not billions of dollars in heavy duty "care" for our kids which is unnecessary if they're properly, scientifically, medically treated. I have no idea what they can possibly be thinking…but we have them on record and we will hold them to their promises…no matter how long it takes.

A lot of us are frustrated with the glacial pace of getting justice for our children. To you all and to myself I say, patience. Those of you who know me know it's not one of my biggest virtues, but again, patience. Every week that passes, every month that passes, yes, even every year that passes, more and more evidence comes in to prove we are right, and more and more judgements come down to prove they are wrong. Sooner or later, these liars we elect are going to run out of higher courts. And finally, they will run out of votes as well. We played our part in exposing the NDP for the venal vindictive scum they were. We will, if necessary, play our parts in bringing down the Liberals next. The biggest problem with the political landscape of our beloved province, in my opinion, is that things here always seem to be so one-sided. The Socreds rule in impunity forever until finally they can't fool people anymore, and then we get the NDP. I was really hoping Gordon Campbell meant it when he stood up on election night and invited people to hold him to his promises. Well, we are taking him up on that invitation.

Patience, my friends. Our children will have their rights upheld and fulfilled, and hopefully the next generation will never have to go through the agony we did — of battling tooth and nail against the people who are obligated by law, ethics and morality to help them, but won't.

Avery
Ariel's Dad

[David Bridges]

Re: The Referendum

What the bloody hell has that got to do with our cause?

I for one see the billions of dollars about to be paid to Indians on top of the billions that are already wasted as just more money that could be spent on our truly deserving, disabled children.

So shut up!

Dave

[Cory McLaughlin]

Hello everyone,

Thought I'd pass along a possible idea for
those of you pondering the current
referendum. Obviously everyone will do as
they see fit but this was a form of protest that
my husband and I, and now several other
friends and family members, have chosen to
try to voice our displeasure with the Liberal
government.

We are returning our unmarked ballots to our
local MLA (Kevin Falcon of Cloverdale) with an
accompanying letter. This letter condemns
the spending of millions of dollars on this
referendum instead of keeping a promise to
help autistic children with ABA-Lovaas therapy.

Like I said, just a thought, and by no means
pressure…we simply wanted the government
to know that we will not believe one word or
support the Liberals again.

Cory and Gary McLaughlin
Liam's Mom and Dad

[Deleted User]

I am nice.
I seek approval.
I am gentle, kind, and cooperative.

Then I get the diagnosis.

I am scared.
My child may never speak.
My child may never live on his own.
My child may become difficult.
I am so scared.

I have hope.
But I may not be able to afford it.
I have more fear.
I have anxiety.
I have anger.

I am right in what I ask for.
I am denied.
I have more anxiety.
I have more anger.

I become desparate.
Desparation consumes me.
I am a wreck.
I can’t afford to save my child.
God, I am angry!!
I am so desparate and angry!!

So I cry and I yell, and I threaten, and I cry some more.

Finally,
I am hushed.

I am humiliated and exhausted.
But for now,
I have hope.

[Author]

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