[Super Dad]

Re: preschool

Avery, Michelle and Barbara: Thank you for the much-needed advice!

Tony

[Super Dad]

Has anyone here had a child in preschool unaccompanied by an ABA therapist? My son, aged two and a half, is in a Montessori by himself. My family, after some limited opportunities to observe, tells me that he screams and whines a lot less than at home. I've talked to my behavioural analyst about this, and she warns me that the teacher (who is unaware of his diagnosis) may be too lenient with him. Perhaps he is less frustrated in school because she is not demanding much compliance. Now I am nervous about how this may affect his behavioural intervention. I am afraid that he will make a habit of following his own agenda, if he is allowed to do so for 3 hours a day. Can anyone tell me: how big of a risk am I taking?

Tony

[Super Dad]

On Nov 29 Linda Reid sent out another letter that said:

"The MCFD is committed to provide autism intervention… The Supreme Court decision does not affect that committment. Families receiving Autism Funding: $20000 under age 6 and $6000 under age 19… will continue to receive their funding to purchase autism intervention."

Most parents will extrapolate that to mean:

"Families will continue to receive the SAME amount of funding, BEYOND the next provincial election. We don't have to fight and these FEAT people are getting all upset for nothing."

Linda Reid has two things we don't: 1) a complete list of all families affected by autism, and 2) an unlimited propaganda budget. This gives her the power to send letters like this to every family any time she wants to. I find this frustrating to the extreme.

Tony

[Super Dad]

The autism online petition just exceeded 3500 signatures!

Winky and Wanda have 16790. How are the elephant supporters getting so many signatures? Let's work a little harder and smarter.

Tony

[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)

[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.

[Super Dad]

I am on the mailing lists of various parent groups, and recently I have felt very disturbed by some of the messages I have received. In particular, people have sent me copies of: a) the Attorney General's Nov 19 press release, and b) Linda Reid's Nov 25 letter to the National Post, both without any critical analysis. In one case the sender actually said "the government has spoken so we're okay at this time."

Many parents are getting the message that the government "will not alter their commitment", as cleverly stated in Linda Reid's letter. Very few will question the deliberately vague wording. Most will automatically translate that statement into: "wow we'll still get our $20,000 so we've been worried for nothing." Due to this kind of complacency, we have only 3000 signatures on the online petition, because even families of autistic children see no need to fight.

Do you know how much Linda Reid's commitment means to me? There are thousands of men who abuse or murder their spouses without "altering their commitment."

Tony (Leo's dad)

[Super Dad]

I am trying to find a good place to quote the U.S. Surgeon General's 1999 report:

"Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998)."

This is taken from the U.S. Surgeon General's web site:

http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism

This is a government web site! Just imagine, outside of Canada there are governments who don't screw autistic children.

Tony (Leo's Dad)

[Super Dad]

Take a look at Michael Smyth's article in the Vancouver Province on Friday, titled "Liberals changed tune on autism funding", subtitled "PROMISES: About-face on funding is worst example of Liberal flip-flops."

He included NDP-era quotes from Gordon Campbell, Rich Coleman, Colin Hansen and Christy Clark. He ended the article with this punch line:

"That's what you call winning ugly."

Tony (Leo's Dad)

[Super Dad]

I just sent this:

Date: Sat, 27 Nov 2004 03:58:02 -0500 (EST)
From: leomom2004@yahoo.ca
Subject: Let me hear your voice

Dear Pastors,

On Nov 8 I sent you an email seeking help to raise awareness of autism and to get more people involved in ABA therapy. It was not an easy thing for me to do, because I was risking my child's privacy. I was also afraid that if I reached out and no one cared, I would feel quite insignificant. However, I went ahead for the sake of our children.

On November 19, the need for awareness suddenly became an urgent matter. By now you must have read about the Supreme Court of Canada's decision against children with autism. As before, my first reaction is to reach out to other Christians. My feelings are similar to those of Jean Lewis (another parent) who said:

"I have personally found that asking the following question usually puts this issue into a perspective that anyone, particularly anyone of faith can understand: 'Will this judgement help those affected with autism, or will it harm them?' If our answer relies on the principles of any faith – the answer is clear – the moral obligation to right this terrible wrong. I am not aware of any faith which endorses the notion of the strong and mighty turning their backs on or ignoring the suffering of the weak."

If there is ever a good time to speak out on behave of the helpless, this is it. Please, let me hear your voice!

Your can help stop the government from ending their support for treatment, by getting people to sign this online petition:

http://www.petitiononline.com/mod_perl/signed.cgi?andap1

To learn more, visit:

http://www.featbc.org

Please spread this message as widely as possible. I thank you on behalf of thousands of children and their families.

Remember these words from Edmund Burke: "The only thing necessary for the triumph of evil is for good men to do nothing."

Leo's Mom

p.s. Here are some excepts from the previous email, with some minor corrections.

Date: Mon, 8 Nov 2004 21:01:15 -0500 (EST)
From: leomom2004@yahoo.ca
Subject: Families desperate for help

Dear Pastors,

I have only been going to your church for a little while, so you do not know me yet, but I am hoping you will be willing to help. My family is one of many who are desperate for help but do not have a good way to spread the message. We are families with autistic children. What we need is people willing to accept training and take part-time jobs as therapists to save our children.

Here is some background information:

Let's start by learning a bit more about autism. Most people have lots of misconceptions and very little knowledge. Unlike the stereotype, autistic children are smart and affectionate. All parts of the brain may be healthy, but have difficulty exchanging signals. Many tasks that people take for granted, such as learning to talk, require several parts of the brain to work together. The disconnection causes multiple disabilities. One result is diminished communication skills. Many children become withdrawn not because they do not want to communication, but because they cannot. Due to the suicide rate among autistic people, many parents see the diagnosis of autism as a death sentence.

The fact is the diagnosis does not have to be a death sentence. Autism is treatable, and there is now a treatment method that offers a great deal of hope. (This is the opposite of what you may hear from the government, who is unwilling to pay for the very expensive therapy.) In fact, there are numerous documented cases in which therapists have completely lifted children out of the autistic spectrum! (The most famous case is documented in the book Let Me Hear Your Voice, by a mother named Catherine Maurice.) The earlier we start the treatment, the better the prognosis, so we are in a desperate race against time.

A child's brain adapts well to challenges, and with proper therapy at an early age, you can actually rewire the brain. There is a scientifically proven method called Applied Behavioural Analysis, which involves highly structured and intense training to exercise the child's brain, much like the way a physiotherapist trains a child's muscles. The method focuses on: a) presenting ideas to the child in a very logical way, and b) using operant conditioning to systematically combine the required teaching with positive reinforcement. Research shows a child can learn at an amazing speed if you follow the proper treatment protocol.

Unfortunately, unlike obvious disabilities such as blindness, autism is an "invisible disability." Due to the lack of public awareness, there is very little government funding, so autism is largely ignored by the medical community. No doctor will spend any time treating an autistic child. Usually the only resource available is the education system, full of special education teachers not trained to provide medical treatment. Parents are therefore forced to become experts and to hire therapists on their own. The most difficult part is finding and keeping good therapists, and a parent's heart sinks every time a good therapist leaves. You can help by spreading the message and getting people to apply.

[Author]

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