[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

[Susan Burns]

MY DAUGHTER AND I ARE GOING TO PAY MR. STEWART AVISIT….PLEASE SOMEBODY COME WITH US [MAPLERIDGE] 604 467 8313 OR 604 807 8799
Susan,
With regards to the recent decision by the Supreme Court of Canada against parents of autistic children, saying that the provinces do not have to provide funding for therapy for these children. The unfortunate question put before the courts is whether the courts have the right to tell government where to spend money against the democratic and legislated right of a democratically elected government. The more important issue of what is the needed amount of support for families of autistic children was not the legal question. For me the issue is to lobby my government for improvements in the support for children and families. If you would like to meet with me on this please call our office at 604 466-7477
Ken S

[Super Dad]

I'm looking at some petitions on the Petition Online site:

* Support the Continuation Of Hunting: 17943 Signatures
* Stop the 2004 New Jersey Black Bear Hunt: 6714 Signatures
* Help Winky and Wanda the elephants: 15856 Signatures
* Save Houston Rock Music 101.1: 20454 Signatures
* Grand Theft Auto San Andreas for Xbox: 11049 Signatures
* Autism Spectrum Disorder: 3424 Signatures

It looks like Winky and Wanda are 5 times more important than disabled children. I'm glad to see that as a society we have our priorities straight. I think our children have imprisoned themselves because they're smart enough to know what's waiting for them outside.

Tony (Leo's dad)

[Monika Lange]

I've sent a letter to the editor of my local newspaper, and I am thinking some of you might like to try to solicit more petition signatures this way too. Especially small town newspapers, as they may be more inclined to help.

Open Letter to All Kitimat Residents:

I am the mother of an autistic child, and I am writing to ask for your help.

Autism is a devastating disorder for children and their families. An
autistic child usually has severe behavioural and sensory disorders, a lack
of language development, and the inability to socially interact. It is a
neurological brain disorder that causes pathways in the brain to be
disabled. With intensive early intervention, these pathways in the brain
can be reformed and a child with autism can be rehabilitated. If treatment
is not early or intensive enough, the child grows up to be mentally
handicapped for life, at a huge expense to society.

A scientifically proven treatment exists, and this treatment is by far
cheaper than lifelong institutional care. Your government refuses to pay
for it. The government’s choice is to pay now, or pay later – to the tune
of millions of dollars per individual for lifelong institutional care. The
government has chosen to pay later, with devastating effects to autistic
children, their families, and your tax dollars. Decades of scientific
research at UCLA, the world’s premier research centre for autism, have
proven that 87% of autistic children can be rehabilitated. This would save
taxpayers millions of dollars for every person who receives the treatment.

There are many children in Kitimat who suffer from autism. For those
children, it is a life sentence of neurological hell. Please take a minute
to sign a petition calling on government to fund this treatment, and help to
give kids in your community a chance. And please forward the website to all
of your family and friends by email. The petition can be found online at
http://www.petitiononline.com/mod_perl/signed.cgi?andap1

This petition will be presented in the House of Commons by your Member of
Parliament. Remember, your tax dollars are already carrying the burden of
this disability, but children remain untreated. Early intervention would
cost far less, and would give kids a chance to become contributing members
of society. Please help.

[Stella Li]

Barbara, I was in tears after I read your poem. The picture is so real.

When we parents see our children improve with Lovaas ABA therapy we have hope. When the therapy hours were cut back because of lack of funding they regressed… Then we think of their future when they become adults… How unreasonable and unethical to treat a human being like that! It's like we're watching our children "dying" when we know exactly how to help them recover from this "once like a life sentence condition"… Just because Canadian government don't see our children's needs they ignore them… till they become adults who are no longer productive, who become burdens of the society…

We must continue to fight for our kids!!

Stella

[Barbara Rodrigues]

Twice now when I have heard AG Plant on the radio he has said 'oh we don't warehouse them anymore'. Well if any of you have seen 'outing day's' where these poor adults are put in wheelchairs (easier to control them) and taken out – warehousing is an adequate term. Below is my email to Bill Good also with a poem that I wrote 3 years ago when the Liberals cut Jeremy's funding because he was 7 years old – maybe some of those people in 'la la denial land' better look up the history of funding for our kids and realize that the Auton ruling has only been what was protecting and giving to our kids. We no longer have that shield – we need to fight not when our funding is cut but before – because trust me it's not a matter of 'will they cut funding' but 'when'.

Dear Mr. Good:

Twice now the Attorney General has stated that when our autistic children grow up – without treatment – they won't be warehoused or institutionalized – he keeps saying they don't do that anymore.

Yet, how does over medicating them – putting them into a wheelchair (when they can walk) and then taking them out on an outing where they just sit and self stim – not be warehousing them? Their lives have no meaning – they do nothing productive – have little if any quality of life. Whether they are put in large buildings (institutions) or small group homes – the cost is still extremely expensive starting at the low end of 75,000 per year and up. The aides are not trained in ABA – so there is no teaching, no learning with these poor souls. ABA does and can teach at any age – science tells us the younger the better – but each individual can make gains at any age.

As for the Government's promises not to cut funding – well – we all know they have before and the only reason money was put into to autism treatment was because of the Auton ruling.

As for the warehousing – many areas such as Langley, Maple Ridge or Penticton have 'outing day's' where they take their autistic adults out – they are always in wheelchairs even though they can walk.

When my son's funding was cut off the second time when he was 7 – we had to lower his hours and he started regressing. Below is a poem I wrote.

Do You See Them?

Do you see them, Mr. Premier?
Do you see?
They're the adults and it's outing day
They are 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 no longer seem real
Some are hard to look at
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 loved.
They lived at home when they were young
But without treatment — they never learned
They were never given the skills nor the abilities,it just became to 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 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 huge 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 path he is on is so much better
There are no institutions in this child's future.

You promised to help, Mr. Premier
You said you would give full 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 his funds
We had to scale back his therapy
His doctor's told you he would regress – they warned you of this.
And we pleaded, we cried and we fought . . . our very best.

Do you see him, Mr. Premier?
Do you see?
That's him sitting staring in the chair
Do you see his balding spot
Can 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

[Andrew Kavchak]

Hi Folks,
If ever there was any doubt that the Auton ruling should be a concern for all Canadians because those suffering from other medical disorders and illnesses could no longer count on medicare, consider this news below regarding Ontario's Health Minister, Mr. Smitherman, and his recent promises. It is always an interesting exercise in mental gymnatics to try to figure out how bureaucrats and politicians find that saving a life is not "cost effective" in certain circumstances.
Andrew (Ottawa)

Smitherman reneges on Fabry treatment promise
The Ottawa Citizen
Nov 30, 2004
Page: A3
Section: News
Edition: Final
Byline: Sutton Eaves

Despite a promise that he "will make certain of coverage for Fabry," Ontario's minister of health yesterday would not agree to cover expensive treatment for the rare and fatal disease.

Instead, George Smitherman said he will wait for a second review process to finish before deciding whether to cover potentially life-saving enzyme replacement therapy, which costs between $240,000 and $290,000 per patient each year. A national panel of medical experts, the Canadian Expert Drug Advisory Committee, recently reviewed the only known treatment for Fabry disease and recommended provinces not pay the cost because the therapy is not "cost effective."

Fabry disease is a rare genetic disorder that kills most sufferers before they turn 50 by clogging up the heart and kidneys.

In a handwritten note to Kitchener's Donna Strauss, whose husband died from

Fabry disease last spring, Mr. Smitherman assured her that the province would pay for enzyme replacement therapy for Fabry patients as it already does for sufferers of similar diseases, Gaucher and MPSI.

"As you struggle to deal with such a huge loss I wish to assure you that I will make certain of coverage for Fabry," the letter read. "Don't let any stories about the drug's slow approval add to concern about coverage."

Yesterday, Mrs. Strauss and her daughter, Julia, a carrier of the disease, travelled to Queen's Park with other Fabry patients to hold Mr. Smitherman to his promise. Mr. Smitherman dodged the meeting, citing a scheduling conflict.

Wiping the tears from her eyes, Mrs. Strauss said she didn't understand what his intention was when he gave his personal guarantee of coverage for Fabry treatment in July.

"When he sent this letter to me, I felt wonderful. I felt he was going to stand by his commitment because he assured coverage for Fabry patients in Ontario. So I believed him. And I don't want to attack Mr. Smitherman, but I'm actually quite disappointed and angry right now."

[Nancy Walton]

WE are still in need of volunteers to help get signatures in the Dosanjh riding of Vancouver South. We are planning on setting up a booth at a grocery store or mall Saturday (and sunday if we get enough volunteers). YOu do not have to live in the riding.

Nancy Walton
wiklo@shaw.ca

[Nancy Walton]

Dearest Autism friends,

WE have reached 2200 hard copy signatures (with another 1000 to be sent in soon). Signatures have been sent to 17 MP's.

However, most of these MP's are in BC. We need to keep sending a strong message here, but we also need to be reaching more Canadians and getting them to get petitions done in this area. PLEASE send an e-mail to anyone you know who lives outside BC. Ask them to download the petition at featbc.org/petition.pdf and hand the petition in to their MP. They can contact me wiklo@shaw.ca to let me know how many and who recieved it.

This is very important. Please do this for all the autistic children in Canada.

Nancy Walton

[Barbara Rodrigues]

Hey guys:

Has anyone else got flack from their MP's office – the assistant at Stockwell Day's office was insistant that there was nothing that they could do blah blah blah. I explained to her there was – but I am astounded that she spent the time arguing with me and trying to pawn me back to Bill Barisoff – who is useless. Anyhow is everyone else getting good reception from their MP offices?

Just wondering. You would think with all the bad press Stockwell Day has gotten in the last few months that he would jump on this bandwagon and try and get some positive press.

Barbara

[Super Dad]

In case anyone you know is still thinking "oh they won't dare to withdraw funding", Dawn lists some ways they can do it without drawing public attention:

From: Dawn Steele
Sent: Saturday, November 20, 2004 1:50 PM
Subject: BC Government responds to Auton

Re: BC government eyes "transition plan" following Auton ruling

On Friday, the B.C. government issued a press release in reaction to the Supreme Court of Canada decision on the Auton case. Apart from the expected pleasantries, the press release stated: "The government will continue to support the families involved with a transition plan that respects the court ruling."

This begs the obvious question: "Transition" to what?? The government statement goes on to tout dramatically increased funding for autism programs in recent years, (funding that successive governments fought tooth and nail in the courts for six years to avoid paying). The early intervention funding in question (for under-6's and then for over-6's), was only finally provided under direct order of the lower courts, orders that are now cancelled by the Supreme Court decision.

Missing from the press release was any firm commitment to maintain current funding or to address gaps in early intervention for autism and other special needs. However, one would hope that the ruling BC Liberals would be loath to provoke the political fallout of any immediate or dramatic reductions prior to the May 2005 elections, especially in the face of budget surpluses and widespread public sympathy for vulnerable groups, who have suffered the brunt of three years of budget cuts.

Will the BC government try to cut autism funding? On the positive side, new federal child care funding might make it easier to maintain early intervention programs, particularly if there is strong accountability. The structure of the current autism programs–a fixed dollar amount per child–also makes it difficult to use the more discreet methods like waitlists or nickel and diming programs to death. Also, no political leaders want to be seen as "the Bad Guys", especially when everyone is watching and the victims are struggling families and vulnerable kids, as is currently the case.

But the record does not hold out much optimism. In opposition, the Liberals committed to autism funding and blasted the NDP government of the day for fighting the Auton families in court. However, as soon as they took office, they changed 180% and appealed the first Auton victory. While the BC Liberals have consistently claimed commitment to early intervention, they tried to make unprecedented cuts to MCFD (MInistry for Children and Family Development) programs for other children with special needs, only relenting in the face of political pressure. Special ed has suffered terribly, going from bad to dreadful under their watch. The BC Liberals also enforced unprecedented funding cuts for community living services for adults with autism and other developmental disabilities.

Attorney General Geoff Plant's recent statements to the media suggest that BC Liberal policy does not accept that adequate funding for autism treatment, special education, etc is either morally or economically justifiable. However, the Liberals have shown that they will respond to sufficient political pressure. They face competing and often contradictory political demands from all quarters, so it comes down to their weighing the political consequences of being seen as uncaring or cruel to vulnerable children vs. the costs of relenting.

Finally, all the talk of budget surpluses and economic optimism in the run-up to the May 2005 elections might seem to provide some cause for optimism. But the cynic will wonder if, once the election is over, all this optimism won't quickly turn to gloom and more fiscal austerity due to a rising dollar and interest rates, sluggish U.S. economy, falling commodity prices, failure to resolve trade disputes or unexpected new crises.

Having spent a great deal of time watching the efforts to cut MCFD spending over the past three years, here are some ways I think they might try to cut Autism funding: 1) Slowly, under the table, with "restructuring" and re-shuffling of programs and portfolios so that it's difficult or impossible to compare budgets and pin down what's actually been cut over time; 2) They're likely to try to mask cuts with a red herring concession or two that can be cited for PR purposes to muddy the waters and permit claims that they've actually increased funding; 3) Undermining public sympathy for autism funding in general by attacking the credibility of the Auton plaintiffs or by exploiting the sometimes pasionate debates about Lovass treatment, the particular form of ABA that was the core of their case; 4) Playing "divide and conquer" by re-allocating autism funding to other disability groups (who need early intervention just as urgently as kids with ASD) instead of topping up other areas that are badly underfunded.

The legal battle waged by the Auton families these past six years provided a solid foundation of "entitlement" (for lack of a better word) that enhanced out-of-school services for all children with ASD, protecting them from the cuts happening elsewhere. Our children benefitted from early intervention funding without families having to do the relentless political lobbying that was required in the past–or that other disability groups have had to do to mitigate the worst of the recent cuts.

With that foundation now gone, it will be critical for families and leaders to come together and pool energies to establish a coherent, broad-based and effective political presence to fight to preserve current programs and to address existing gaps, at least until an alternate legal or legislative platform can be established to provide the secure, long-term foundation that the Auton families were seeking for us all. As the Autism Society of Canada pointed out, Auton was just one legal angle and there are currently 180 other legal actions in progress. The Supreme Court decision also puts new pressure on governments–federal and provincial–to address this need through legislation, as the U.S. has done, thus providing far stronger protection for autism services nationally.

We need to realize that there is still much hope, we need to work together and reach out to other disability groups, we need to be strategic and to carefully channel our passions, we need to overcome differences and be pragmatic and seize the opportunities that do exist, while we work on laying this longer-term foundation.

D.

[Author]

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