[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Cindy & Bruno]

Does anyone know of any group that is set up in British Columbia to help children that have been damaged by the mmr shot. If so please write us Cindy and Bruno Zaffino at brszaffino@home.com

[Deleted User]

Subject:
Re: The FEAT BC Classifieds
Date:
Thu, 23 Aug 2001 18:07:02 -0700
From:
"Tamara Leger"
To:

References:
1

I've seen a large set of the blocks at a store in the kids market on
Granville Island.
Can't remember the name of the store, but they also sell cloth story books,
feltboards galore adn lots of baby type stuff. The foam blocks they get are
from Israel and they also have a catalogue.

Good luck!

t
—– Original Message —–
From: "FeatBC Discussion Board" ;
To:
Sent: Friday, August 17, 2001 6:01 PM
Subject: The FEAT BC Classifieds

> ————————————————————
> FeatBC Discussion Board: The FEAT BC Classifieds
> ————————————————————
>
> By Diana Sabbagh (Sabbagh) on Friday, August 17, 2001 –
> 06:01 pm:
>
> Hi,Iam looking everywhere to find BIG FOAM BLOCKS but it is
> unsucceful, can anyone tell me in which store can I found
> them?
> Thank you for any help.
> My e-mail is : di20d@yahoo.com
>
> ————————————————————
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> Use this link to go directly to the discussion:
> http://www.featbc.org/chat/cgi-bin/show.cgi?9/9
>
>

[Deleted User]

Just wondering if any members have had the opportunity to peruse the WEAP schedule of fees for service. The rates are based on the model which is chosen. There appears to be a wide variance in hourly rate for the senior supervisor based solely on model – an 80% difference to me is quite significant. Also, hourly rates for phone consults vary quite a bit too. Comments.

[Darlene Pugsley]

Thank you for the responses to my questions. I'm just back from four days in Ottawa at Autism Society Canada, and with the background from FEATBC and after listening to what's happening in Ontario and in Quebec, it has been much easier to start to understand the big picture. Individualized funding seems the only way to safeguard the right to effective treatment, though options including the role of gov't funded centres and/or gov't paid, properly paid trained casemanagers seems intriguing too.

Now, to shovel a path through the kitchen…
Thanks again,
Darlene Pugsley, ASNB

[helpjames]

CkNW Radio Link Correction

The interview that Isaac is talking about is actually at http://audiovault.cknw.com/ram/d2-15.ram

[Isaac]

Hello everyone.

Government’s fraudulent EIBI program was a topic on CKNW radio this afternoon.

The piece is available at the address below for the next four days:

http://audiovault.cknw.com/ram/d1-15.ram

The interview is at 44 minutes + 42 seconds into the clip. To hear the interview, move the Real Audio slider control up to that time mark in the audio clip.

Feel free to send your thoughts to government! Now is the time.

Isaac
(Miki*s Dad)

[Nancy Robins]

I would like information from parents that have tried B6 and Magnesium treatment with their autistic child. I am especially interested in this treatment using Super Nu-Thera.

[Maureen St. Cyr]

Hi Darlene, welcome to the west coast :-)

You raise a lot of really valid points, and I just thought I'd chime in with an opinion of a few of your questions.

On excellent centres funded by government, this would be a great idea if the centres truly qualified as "excellent". Unfortunately here in BC, the government has a long habit of funding "service providers" who are neither excellent nor qualified to deal with autism treatment. It is one of the many reasons most of us are fighting to have autism responsibility shifted back to the department of health with all the other medical disorders. But to continue the "medical" explanation, government really shouldn't need to directly fund such centres. If the legitimate autism experts knew people would be able to access their services through the medicare system, they would open here. Then parents could choose their treatment provider the same way they choose their doctor and physiotherapist and etc.

As for monitoring programs, that is the joy of science. A truly science-based program comes with its own monitoring system — data collection. It's not hard to check the paperwork to see if your child's progress matches your "gut instinct". I have often been frustrated because I feel Ariel is moving so slowly, despite friends and others telling me how amazing the changes in her. One look at the data shows me how they are right and I am, well, not wrong exactly, but perhaps expecting too much of the beautiful girl. Yes, she is progressing, and more rapidly than I would "guess" based on my "gut", or based on my experience being with her all day every day.

Your point about parents ending up with the same burden of responsibility with or without individual funding is valid, but really doesn't matter. We have that now and are all going broke — I don't know anyone who'd complain about having the financial burden lifted. And really, all parents have that same heavy responsibility for their children's health in all other aspects, so why should autism treatment be different? We consult our family doctors and specialists and gather opinions and make a decision. Whether that decision is to use one consultant over another is no different from deciding to use one doctor over another.

For those parents who need assistance setting up their program, the resources are the same as they always have been — other parents, chapters of FEAT and the Autism Societies where appropriate, and the consultants themselves.

As for your last question, at the risk of being accused of flippancy, the best way to ensure children receive the treatment they are entitled to is, in my opinion, to pay for it. When the day comes that no Canadian child with autism is left abandoned and untreated by an uncaring, unlawful government health care system, that is the day we can be sure they will receive the treatment they are guaranteed by law.

Avery
Ariel's Dad

[Darlene Pugsley]

Hello everyone;

Thank you so much for contributing to this discussion. I'm trying to understand what's happening in BC from the other side of the country, and to learn from what you're going through. I have a few questions- please be patient- we have been trying here to get the government to voluntarily fund intensive ABA for three years now, with no success.

It's pretty clear that the majority of informed parents prefer individualized funding to the government's EIBI program. I have the utmost respect for your expertise, and if that's what you're advocating for then I have no doubt that that is what would provide the most benefit for your children.

Respectfully, I have a few questions about why you have come to that decision. Again, I'm trying to understand from here in New Brunswick, and don't have all the background.

To me, the dream would be to have excellent centres funded by the government. A PCDI, a Bancroft, a May Centre here and there, with billing numbers kind of like a pediatric clinic- within reason, if you have a problem with one, you go to another.

Another question- there's no doubt that parents know which program is working best for their child, and can judge quality by the results- every parent I know is by far the most sensitive judge of their child's progress. But- if you have never had a good quality program, it seems like it would be easy to think that because it is better than anything you've seen so far, that it is good. What's the best way to monitor this?

As far as the ASBC employee not telling parents about ABA because "parents can't afford it", that is absolutely unethical.

And the MCFD claiming that 50% of families don't want ABA? We've heard that same claim here in N.B. I'd like to know where they get their figures. Are they counting the parents of 50 year olds? Are they counting the number of parents who maybe hesitate to file bankruptcy trying to pay for it themselves, but who would want an intensive program if it were funded? Why don't they check areas where a good program is available, and see how many are refusing it?

To be radical- what if 50% of parents didn't want to send their children to school, but wanted them to work instead? Or, from a medical perspective, what if 50% of parents who had a child with any other medical condition didn't want to use scientifically validated medical treatment? Would that be reason to withhold it from those who do?

One last request for clarification- while it is important for parents to be able to ensure a high quality therapy program, I worry that "giving the parents the right" is sometimes taken to a higher level and becomes "giving the parents the responsibility". I hope I'm phrasing this right, because I don't mean this in an argumentative way at all- but I've seen parents who have great difficulty even acting as case manager, especially those in more isolated areas of the province who have little support or those with health issues of their own. If parents aren't able to figure out how to get a program up and running, and submit receipts, and monitor the quality…what would be the best way to ensure the children receive the treatment that they are entitled to?

Thanks for your patience,

Darlene Pugsley
president, Autism Society New Brunswick

[Deleted User]

The view out my window on EIBI,ASBC, and our children.
From Alex Barclay, Powell River, BC

When I became frustrated with current government services and sarted researching treatment options the ASBC site was one of the first places I looked. ASBC advocated therapies such as sensory integration, audio integration, play therapy etc. There was no advocacy specific to applied behavior analysis. This was only a year ago. ASBC has never helped my family in any way that I am aware of nor have I ever given them permission to be my voice to government.
I feel the EIBI program has a place in this province if its mandate is to strive to attain excellence in the quality of behavioral treatment services it provides for families that want the government to orchestrate their autistic childs treatment program. EIBI is going to take a long time to be truly effective and smooth running if it ever does. In the meantime families either sit and wait or break the bank to start effective programs. Government will never be able to create effective behavioral intervention as effective (both in cost and results) as determined parents given the resources to do so themselves. To put into perspective the effectiveness of a government program i will offer our personal experience as an example:
Last September our son Patrick entered grade 1. The school made no preparations (even though we asked them too based on the kindergarten experience and), instead choosing to "wait and see what happens and we'll make a plan from there". Well what happened is "we will wait for the "Gateway" (PREP)contractor/consultant to give us a program". Two months have passed, the school can,t deal with our son past noon and then 11:00 am, we have 4 different SETA's because they are busy doing the contract shuffle for best placement$. Meanwhile the teacher routinely dismisses our son for speaking out of turn during class (our son was/is language delayed), this in turn would leave our son out of class and rejected, needless to say behaviors began spiralling out of control and weekly regression became evident. Our PREP consultant finally shows up does an assessment and designs a program for our son in 2 days flat. At the school team meeting the consultant gives her suggestions (pretty much the same ones we made prior to the start of the school year)and our sons teacher erupts in a huff and declares that none of "that stuff" will be implemented in her class…and it wasn't.We called the PREP consultant after this-the best she could do was offer the advice; "just keep trying".
The school and district could do nothing. This teacher and the Special Ed teacher both told me (seperately) that they have no intention of even trying to deliver our son a grade 1 education. We subsequently removed our son from school for over two months to force changes in staff for our son. He never did attend a full day or take part in class with peers for more than 2 hours in a day last school year.
I do not expect a government EIBI program to fail this miserably but our example should provide some illumination upon the problems of government run, autocratic institutions/programs with union staff.
The government should fully fund our individual programs (to a certain $ limit) with the expectation of full disclosure of program content, progress, and effectiveness. Only when the government can prove without a doubt that their programs are consistently more effective in outcome and less costly to taxpayers should they even begin to question individual funding of aba programs.
In closing I would like to add that we are two weeks into the start of an aba program for our son. We are receiving no direct funding for it. Our son is showing remarkable willingness to learn in this format. We realized that he has answered over 300 questions today and did that with a smile. One of our sons programs is "Conversation".In this program we have been working on; "I am Patrick" , "I am Seven" , etc.. Tonite he went over to the fence and said to our neighbour: "Hi, I am Patrick Barclay, I am seven. Do you want to talk to me?" This is a first!!! We would not be realizing the benefits of effective treatment for our son without FEATBC and the many families who encouraged us through this network of support.

[Author]

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