[FEAT BC Admin]

In this topic area, discussion is on all issues relating to setting up and running a home-based intervention program. Please feel free to bring up any problems or suggestions. Parents can help each other greatly by sharing information and giving suggestions.

In addition to parents helping parents, A.B.A. professionals on in the Discussion Group can also help provide insight and guidance.

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[Deleted User]

ASBC North Shore Lecture Series
Monday November 22; 7-9pm
Peter J Peters Room
West Vancouver Memorial Library
1950 Marine Drive/22nd
***Parents ONLY Session***

"Holy Cow, they Ruled Against Our Kids!"

On Monday November 22 lawyer, and Counsel for the Respondents,
Birgitta von Krosigk from North Shore Law will be talking about the
Supreme Court of Canada's ruling in "The Attorney General of British
Columbia et al v. Connor Auton et al" and what that means to
past, present and future autism medical treatment funding at home
in BC, and across the land.

A limited number of copies of the judgement will be available; we
encourage you to bring your own copy of the ruling to follow along.
Judgements are available at: http://www.lexum.umontreal.ca/csc-scc/cgi-bin/disp.pl/en/rec/html/2004scc078.wpd.html?query=%22autism%22&langue=en&selection=&database=en/jug&method=all&retour=/csc-scc/cgi-bin/srch.pl?language=en~~method=all~~database=en%2Fjug~~query=autism

Coffee and donuts to be provided and general discussion to follow the
presentation.

Please know that this is a ***Parents ONLY Session***.

Hope you can join us.

tamara & anissa

[Deleted User]

I have been reading over all of the posts this morning and I wanted to respond to Janet who said that she is nervous regarding what the government will do next.

Attention all parents whose children are under the age of 6 (because most of you haven't been in this fight long enough to have suffered the manipulations of the government!)

BE AFRAID, BE VERY AFRAID!!

okay perhaps a bit dramatic but I must warn you… yes your funding could be in jeopardy. I realize that Gordon Campbell made a statement about not deserting these kids etc etc. but I for one have learned that Gordon Campbell is not to be trusted.

When we were first thrown into this world, the NDP was in power. The NDP gave families nothing. Under their government we were ignored, harassed and blown off. FEAT tried many, many times to approach them and discuss funding, treatment and the needs of our children. The NDP were horrific!

The Liberals, were, typical of politicians (my apologies if any of you are politicians) quick to jump on our bandwagon. What a great opportunity to look the government look bad?!?! Adorable small children DENIED their rights, desperate parents receiving no funding (and I mean NO funding!) families moving to the US… it was an oppostion party's dream! They were supportive, they backed US up.

yes you are reading correctly.

The Liberals scorched the NDP for their position on AUTON and publicly chastised them. As election time approached, many promises were made, quite specifically I might add.

The Liberals won, they took power… I actually cried that day thinking that finally, FINALLY justice would be done.

What a fool I was. All of those promises vanished. Those politicians who welcomed us and fought for our cause? They didn't need us and refused to return our calls. Their criticisms of the NDP for fighting Auton? Vanished as they led this province into the appeals court.

Gordon Campbell's promises? Gone like smoke.

Yes we received funding, minimal funding, cut off at the age of 6. But that was due to publicity around Auton and FEAT and the government seizing an opportunity for some good press, conveniently RIGHT before Auton went to the appeals court.

So do I trust Gord when he says that he will not pull funding, not on your life.

many of us have ridden on the coat tails of the families who came before us. These families have endured harassment, insults, huge financial burdens and have created what we enjoy today.

The fact that there are local consultants – thank the families who began therapy 9 years or more ago and brought a consultant from the US who personally trained many of these fantastic consultants in our area

Information available on ABA when your child is diagnosed? thank those families once again because there was none when we received diagnosis.

extensive media coverage of our children's plight? thank those families who fought to be heard many years ago.

funding? despite its limitations! when my first child was diagnosed with autism, there was none. and I mean NONE.

Auton, achieved great things for our children. The Supreme Court of Canada has let us down but those families who fought have paved a road. I know that many of them will continue to fight but it is time for all of us to join this fight. many parents have had a luxury of being able to sit back and not fight and have said my child receives funding the government is being good to me, i have no reason to fight.

Those days are over. You may still receive funding but know that at ANY time, this could be in jeopardy.

We can't expect those exhausted parents to fight for us, its our turn.

( BTW: Six is not so old. Those of you who saw my son on CBC… he is six. He is, according to the government, no longer treatable. I should tell you that over the last 6 months my son has made such significant gains that when our Consultant was in his school this year she was amazed at how well he was doing in the class, keeping up with his peers academically, maintaining control of himself etc. He is not untreatable.)

[Barbara Rodrigues]

HI Laurie:

Actually I DO think those beaurocrats over in Victoria went out for champagne toasts over this judgement yesterday.

Barbara

[Laurie Guerra]

I sit and ponder, "if we are the losers, just who are the winners?" I just can't imagine any gov't official saying, "Yeah, we don't have to treat those kids!"

For the first time in my life I am truly ashamed and disgraced to be a Canadian. Our nation could have set such an amazing precedent but instead took the very "low" road.

David, once again you said it, let's DO something, not just be sorry.
It's like a good vs. evil, God vs. the Devil, David vs. Goliath………….
There just has to be another road to take.
Lets's just brush off the dirt, rise back up and and make good of the saying, "IF YOU DON"T QUIT YOU"LL WIN!!

They messed with the wrong people!

Wes's (a recoverred autistic child, thanks to y'all) mom,

Laurie

[David Chan]

Hi all,

I'm reading the Newspaper, and reading the internet post from
different papers. The Quotes from the SCC and Various
Politico's are Always start with how sorry they feel about the
Auton Judgement. Awwwwww, "it just sooooo sucks to be
you"…However we don't have to pay for things that aren't CORE
health care needs, bye.

I for one am sick of having people say SORRY to me. When I was
very young, My Blessed Immigrant mother would say to me,
"people always saying sorry, but saying sorry doesn't mean
anything, go DO something to make it right",

Never realized how wise that was. That expression of regret
doesn't mean a d— thing, if there is no action attached to it.

They feel SORRY, but we still have to TREAT our kids. so I guess
the point of this whole post, is for all the folks that feel feel
SORRY and REGRET for the decision of the SCC.

JUST STOP IT !!!!!!!!!

If you all are so genuinely filled with regret and feel symapthetic
to all these families well then

DO SOMETHING TO MAKE IT RIGHT !!!!!

WE, I mean EVERYONE, needs to demonstrate that as a collective,
we WILL NOT PERMIT this to happen to the most "vulunerable
memebers of society".

So like my mother said

Don't Say 'SORRY" go DO something to make it right.

Dave
Mr.P's dad

P.S. No, I don't know exactly what action to take right this
minute, but you guys are smart out there, and you will come up
with things to do to make it right for our kids, that I haven't
even concieve of.

So thank you guys in advance. Oh one more thing, I even extend
these thoughts to folks who made it necessary for us to fight. It
isn't about being "RIGHT", it's about doing right for our kids.

[Super Dad]

One last word regarding treatment intensity: Thank you Louise, Sara, Nancy and Michelle for sharing your experience and knowledge. I am especially grateful to Michelle for her extremely valuable advice. It's helping me a lot more than you may realize.

Tony (Leo's dad)

p.s. I am confused about why we may not have to worry about the money after Friday. I thought the whole point of this battle was to reverse the provincial court decision and end the current funding. To me that means next week I may have to sell the house just to pay for the 18 hours.

[Sara White]

One more point on the Sheinkopf and Seigel article … they didn't find nearly the 'recovery' rate that was found in the original Lovaas study. I'm not saying that more hours is the key to success, but I just wanted to let people know what's out there in the scientific literature. Bottom line is that you have to do the best you can for your child given the means that you have (at least while the services being funded as they are now). Like Michelle said, hopefully after next week parents won't have to worry about making this type of decision anymore!

[David Chan]

Thanks michelle,

There isn't really much more to add to the discussion

I think what we have here after all the scholarly discussion and
academic citations is a failure to commit.

It's our job to find the best treatment for our kids. So good luck
with the comparison shopping. And lets hope the chosen
treatment is compatible with the postal code that is chosen.

Good Science is one thing, but Good Real Estate, well……..

Deeply in debt, and livin' in a shack
but living la vida Lovaas

Mr. P's Dad

[Deleted User]

To add a few comments to the discussion of effect of amount of treatment hours:

-Quality of treatment has a significant impact on the results of treatment. While I have not seen any studies to back this up, in other words, these are my anecdotal observations, 40 hours of poorly designed treatment (i.e. poor quality ABA, possibly from those who are not properly qualified to provide such services) is not equal to 40 hours of high quality, science based ABA treatment.

-again, I have no science to back this up, it is my opinion only, but I would argue that 20 hours of quality treatment is better than 40 hours of misguided treatment.

-40 hours per week is not a guarantee of improved results but it is a significant factor.

-It is important to note that number of hours are not the only factor of the Lovaas et al study that contributed to its results: parents participated actively in the treatment model, allowing therapy to effectively occur, at least in some cases, throughout most of the child's waking hours. Parental involvement in treatment is crucial. I have worked on teams where we have strong instructors but little parental involvement and weak teams where parental involvement is high. Again, no science to back this up, but I think some of the greatest successes I have seen have been on teams where parental involvement is high. And by success I do not necessarily mean loss of diagnosis but improvement in quality of life.

-at UCLA, treatment was delivered by students and researchers who participated in a minimum level of coursework before working in the clinic and were trained and supervised by those with extensive experience. Here in BC, we recruit from a wide variety of sources but rarely do we recruit individuals who have studied behaviorism (never mind applied behavior analysis) in an academic setting. In other words, we are often starting from scratch. We are also not trained to the extent as those who provided training and supervision at the young autism project. Simply put, we do not have the same knowledge and training base as they had at UCLA. Often, we work around issues of staff shortages, there is a lack of adequatly trained Senior instructors, therefore many teams are struggling to do the best they can but may not be instructing at an optimal rate due to training deficiencies.

Keep in mind that 40 hours of quality, effective, consistent, scientifically based ABA treatment is the ideal but it is very hard to attain. Focus your efforts on quality first and then provide the most intensive amount you can afford. I have seen children who have done exceptionally well on less than 40 hours a week (i.e. 25-30) however I can also say that under more optimal conditions, they may have gone even further.

We must do the best we can, and I often recommend to parents to build in as much intensity as financially, emotionally and physically possible but to remember that therapy rarely ends after 2 years as it did in Lovaas et al (for those who lost diagnosis). In our reality, therapy can go on for many years and for some children last throughout childhood. The ability to make it through the long haul is critically important.

Provide the maximum amount of hours that you can, continually monitor your treatment for quality (i.e. video monitoring, hopefully having access to a strong team leader who can guide and train your team, and ensure your consultant is qualified and knowledgeable) and stay away from guilt trips. A home based ABA program can easily overrun your life, don't let it. Your child's treatment will take priority, of course, but you must also find a way to make that liveable because like it or not, this is and will be your life for some time and if after 1 year you are burnt out and unhappy, your child will suffer regardless of how much money you have put into your program.

Perhaps this discussion will become mute on friday when the Supreme Court of Canada announces its decision… wouldn't it be great if parents no longer had to settle for something less than what their child deserves?

[Super Dad]

Hi Sara and Nancy:

The Sheinkopf and Siegal study (1998) had some interesting results. I have not found a copy of it, but here is a summary by Tristram Smith: "children who received treatment based on the UCLA model in the UCSF study (Sheinkopf & Siegel, 1998) scored an average of 28 IQ points higher than children in a comparison group that did not receive such treatment at follow-up (90 vs. 62). The investigators reported that children who averaged 25 hr/week of treatment appeared to fare as well as children who averaged 35 hr and suggested that treatment need not be as intensive as at the UCLA project. However, the small number of children at each level of intensity (five) prevented a sensitive test of this issue."

Here is a rebuttal by Lovaas: "given the unknown and non-optimal nature of the treatment provided in the Sheinkopf and Siegel article, we are in no position to argue that more or less of that form of treatment would make a difference. Finally, Pomeranz (1998) questions Sheinkopf and Siegel’s assertion that children who received 20 hours a week of therapy gained as much as those who received 30 hours a week. Dr. Pomeranz comments that the children who received 20 hours a week received many more months of therapy. It is a major mistake to delete such information. There also remains a question of the children’s treatment history, prior to the treatment provided by the therapists in the Sheinkopf and Siegel study."

An article by Glen Sallows states: "Sheinkopf and Siegel (1998)… hypothesized that parental involvement may explain the positive outcomes for children who do not receive high levels of treatment hours from the program itself."

Tony (Leo's dad)

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