[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

[Maureen St. Cyr]

How do you spell government stooge? Gee, could it be Carole McLean and Christopher Booth? Let's see, shall we take it in order?:

"…we hope that when future decisions are made regarding funding other approaches to autism treatment are not disregarded."

Hmm, dolphin therapy, perhaps?

"There is a disservice…in publishing articles suggesting that a Lovaas style early intervention program using applied behavioural analysis is the "cure" for autism."

Ah yes, the "Lovaas claims cure" argument. Seems the government tried that one to no avail as well. Do any of us use the "C" word? Does Lovaas or McEachin or Smith or Madam Justice Allan? I thought not.

"We and many others believe that the Ivar Lovaas's methods are cruel and dated and his premise shows a complete misunderstanding of the autistic child. "

Oh yes, them and many others, like government hacks and "service providers" on their payroll. Such dated methods. Unlike such "new" treatments as Hanen, pulpwood diets, and let's not forget dolphin therapy,

"That there is one golden treatment for any given medical condition is absurd…"

Of course not. After all, why treat bacterial infection with antibiotics when there are so many alternatives, like faith healing…or DOLPHIN THERAPY!!!

"Just because the Lovaas method has been done for 30 years does not mean it is the right thing to do."

No, just because it's been done for 30 years, researched and proven effective — THAT'S why it's the right thing to do. But heck, if you want something new, there's always DOLPHIN THERAPY.

"…we would urge all parents with autistic children to find out as much as possible about autism through a variety of sources."

Funny, that's what we did, and guess what — we found out there was only one therapy program that has any effect, and now we have a laughing happy beautiful daughter, instead of the withdrawn, sad child we once had. But maybe she'd be doing better if we'd tried THE MIRACLE DIET! (thought I was gonna say dolphin therapy, didn't you?)

"There exist many other treatments…"

Name two with any proven effectiveness.

"and each child must be treated as an individual…"

Which is why Lovaas programs require consultants and plans and data collection and adaptation and generalization, as opposed to, say, DOLPHIN THERAPY, which works exactly the same way on ALL autistic children.

"There is no cure for autism, but there are ways to raise children to be successful and confident adults without resorting to a Lovaas program of therapy. "

Sure there are. You can raise children to be successful and confident adults without Lovaas therapy…as long as they're not children with autism….or are on such a mild end of the spectrum as to have few deficits to start with.

I hope with all my heart that these idiots have an extremely high-functioning five-year-old. Otherwise, they're going to get a harsh wake-up to reality in a few years, and their child will be the one who has paid the price for it.

If these two are for real, they are the perfect shining example of how misguided, misinformed and malignant people can be in their ignorance, and they are the best example of why this lawsuit was so necessary, and why this government deserves to be punished for the myths and malicious negligence they have perpetrated on our children for far too many years.

Sorry about the endless vent. Sometimes I don't know whether to laugh, cry or scream.

Avery
Ariel's Dad

[David Chan]

Hi
I get the Sun, and I missed it, can you believe
it. I gotta say, I have done the research, no I
did not pick Lovaas out of hat. I think why
people don't want to admit that the therapy
works, is that underneath it all, no one wants
to recognize what a tremendous amount of
commitment and work it is for the families.
Wouldn't it be wonderful to give these children
a shot, or a pill and poof they are normal
to-morrow.
Lovaas is back breaking, WORK, make no
mistake.
I met this lady
at the workshop at SFU last summer, her
comment was, I quote "You guys live this stuff
don' t you?",
Pretty much she hit the nail on the head. I bet
you all these other therpies that are so much
better, notice none were named, none of them
will involved the
sheer work and tenacity that a Lovaas
program needs. All the
folks doing programs should be given a
collective pat on the back,
for sticking with it and forging ahead.

Have a good night everyone, I know I will sleep
better than some people in West Vancouver
who are chasing rainbows, and finding that
perfect effortless individual therapy for their
child.

Dave

[David Bridges]

Excuse me, guys, but what planet are these two goons from? Do they have government contracts?

[Isaac]

Hi FEATbc listers,

Here is a letter to the editor published in today's Sun. I think many on this list may have opposing views and if so, now is the time to get out your pen and send your thoughts to the editor of the Sun.

Isaac
(Miki's Dad)

___________________________________________________
(Letter to the Editor, reprinted from the Vancouver Sun)

Letter of the day: Lovass therapy is no cure-all for autistic
children

Carole McClean and Christopher Booth Vancouver Sun

We are pleased by B.C. Supreme Court Justice Marion Allen's recent
judgment that autism is a medical disability and the province must
provide treatment (B.C. discriminated against autistic kids, judge
rules, July 28). But we hope that when future decisions are made
regarding funding other approaches to autism treatment are not
disregarded.

There is a disservice done to autistic children and their parents in
publishing articles suggesting that a Lovaas style early
intervention program using applied behavioural analysis is the
"cure" for autism and that all parents should, and are, asking for
funding for such program. We and many others believe that the Ivar
Lovaas's methods are cruel and dated and his premise shows a
complete misunderstanding of the autistic child.
That there is one golden treatment for any given medical condition
is absurd, particularly when so little is known in the complex area
of neural physiology and anatomy. The results of the Lovaas early
intervention program are all based on one study involving 38
children (19 control and 19 test), and the follow-up on some of the
children years later.

Just because the Lovaas method has been done for 30 years does not
mean it is the right thing to do. As the parents of an autistic five-year-old,
we would urge all parents with autistic children to find out as much as possible about
autism through a variety of sources. The key to helping autistic
children is to understand them. There exist many other treatments
and each child must be treated as an individual.
There is no cure for autism, but there are ways to raise children to
be successful and confident adults without resorting to a Lovaas
program of therapy.

Carole McClean, Christopher Booth, West Vancouver

[Isaac]

There is a great piece in the e-zine http://www.click2advice.com on the recent BC Supreme Court decision.

The story is at this address:

http://www.click2advice.com/news_details.asp?newsid=61

Isaac
(Miki's Dad)

[Barbara Rodrigues]

Hello Everyone:

I bought the Saturday Okanagan paper because there was an article with us and the impact of the court decision. I was about to throw away the rest of the paper but the editorial headline caught my eye. Thought you guys might enjoy it.

EDITORIAL

JUDGE SLAPS GOVERNMENT

The short-sightedness of government decision making was borne out this week when a Supreme Court Justice found the province has discriminated against society's most vulnerable.

Justice Mary Ann Allen ruled the province's failure to fund the only treatment for autism many parents and doctors say is effective violates the Charter of Rights.

Four parents sued the province on behalf of their autistic children to receive government assistance for the highly effective, but costly, Lovaas program.

The decision comes as a mixed blessing for a Penticton mother who led a lengthy campaign to restore funding for her autistic child.

Barbara Rodrigues collected signatures, created a Web site and picketed on a daily basis for weeks after funding for her son Jeremy was cut off by what could only be seen as retribution for the lawsuit with which she was not associated.

She and her husband Joe have been forced to spend their savings and borrow money to keep Jeremy in the Lovaas program, which has been shown to allow up to half of those treated to lead a relatively normal life. Other parents have been forced to stop the program.

The province contended that studies purporting to demonstrate the effectiveness of Lovaas autism treatment have serious flaws and that it is still an experimental therapy. And it was argued court orders to require specific medical treatments could lead to a checkerboard effect in the medicare system with some services constitutionally entrenched and others de-listed.

Justice Allen dismissed such arguments, and though she could not quantify a cost-benefit analysis that suggest more than a million dollars is saved for each autism suffer who responds well to treatment, she sided with the parents in the broad sense.

"It is apparent," she stated, "that the cost incurred in paying for effective treatment of autism may well be more than offset by the savings achieved by assisting autistic children to develop their educational and societal potential rather than dooming them to a life of isolation and institutionalization."

She went on to dismiss the potential for "catastrophic results to the health care system," and stated "if there is a constitutional violation that must be redressed, a remedy can be fashioned without the wholesale destruction of the government's medicare system."

Both sides agree the window of opportunity to help youngsters who suffer from autism is small. The province no longer has any excuse to ignore those who cannot speak for themselves. For their sake, if not for the taxpayer's, it must do the right thing and immediately provide funding where prescribed.

END

I hope those of you who have the time, will take a moment to comment to the editor on this editorial.
They also did a nice article with us.

the web site is http://www.ok.bc.ca

Barbara
Jeremy's Mom

[Deleted User]

It is one of the happiest day in my life and my daughter's life.We both can hope for a normal future.I hope to go back to regular life and my job,Elizabeth will have access to me and other people.THANK YOU !
Krystyna,Elizabeth's mom

[Isaac]

There is a good piece in the Vancouver Sun today regarding the recent BC Supreme Court decision.

It's available for download at https://featbc.org/downloads/Sun_07_28_00.pdf

Isaac
(Miki's Dad)

[Deleted User]

Congratulations!

Wow, I'm still in shock. I read my email yesterday and watched the evening news in disbelief. Its actually happened, the children and parents have won. And my thoughts turned to those of you who fought this battle. I can only imagine that it must have been a very difficult road, trying to maintain therapy schedules, family life and take your battle to court. I thought of all of you and wanted to say "thank you". Thank you for your strength and determination. Thank you for fighting for the children who can not fight for themselves. You have and will make a huge difference in the lives of our children.

So I turn my thoughts now to what will happen next and anxiously await more news.

I'm off to give my daughter a big hug and to share my joy with her.
Michelle Karren

[Isaac]

Here is a press release issued today by the BC Liberal Official Opposition. The release is also available in Acrobat PDF format at https://featbc.org/downloads/release_07_28_00.pdf

Full text of the BC Supreme Court decision is available on the FEAT BC server at https://featbc.org/downloads/decision.htm

Isaac
(Miki's Dad)

__________________________________________________
NEWS RELEASE
BC LIBERAL OFFICIAL OPPOSITION

For immediate release
July 28, 2000

Put Children First And Fund Autism Programs

Richmond – Yesterday's court ruling is a victory for families of children with autism – the NDP government must honour it and immediately move
to fund the early intervention programs that children with autism desperately need, said BC Liberal Children and Families Critic Linda Reid.

"We've been calling on the government repeatedly to get its priorities right, recognize the crucial need for early intervention programs for
children with autism and get on with funding it," said Reid. "Once again, British Columbian families were forced to go to court in order to have
their concerns addressed. These families can't afford any more delays or inaction from the NDP like we saw on the secure care legislation.
Minister Gretchen Mann Brewin must stop delaying and immediately undertake to put funding in place for these programs."

"We've been telling the government for years that it has its priorities all wrong. Instead of providing treatment for children with autism, they've
chosen to waste money on other things. It's time to put children's interests first."

"We know from extensive behavioural and developmental research that early intervention programs are essential for young children with autism,
and parents simply cannot afford the cost. In fact, families have been forced to move to Alberta to obtain the treatment they need. The
government's recently announced pilot project for children with autism is far from adequate, and only came on the eve of a court action that
finally forced the NDP to act."

"This is an issue that many Opposition MLAs are deeply concerned about, and I'd like to particularly credit the hard work of Okanagan-Penticton
MLA Rick Thorpe who has worked closely with families of children with autism to raise awareness of the need for funding. We applaud the
parents and families who have sacrificed so much to finally force the government to address their concerns. It's time for the NDP to accept
responsibility and act," Reid concluded.

(end)

Contact: Janis Robertson (250) 213-2888

[Author]

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