[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.

Topic

[Debbie]

hi there to all, i was just wondering if there are any stats on our kids here in canada,regarding recovery,are there any parents that have been able to afford a full program that have seen these results, or any parents that have done less hours due to funding issues that have seen these recovery results,,,,how many children in canada have recovered,,,this is or can be a good argument for full funding,i will be attending this meeting in vancouver on the 13th,because i want to meet these incredible people that have gone through this,and see the bright light at the end of the tunnel,as i do with my son as i expect full recovery,with help from all the aba we can afford,,,,if anyone can fill me in on any numbers that would be great,thanx, debbie http://www.deandeb@shaw.ca

[Deleted User]

Almost Dried Up: Is Full Recovery From Autism Really Possible?
Monday, December 13; 7-9pm
West Vancouver Memorial Library
Peter J. Peters Room

We hope that you can join us Monday, December 13; 7-9pm at the West Vancouver Memorial Library in the Peter J. Peters Room for “Almost Dried Up: Is Full Recovery From Autism Really Possible?” — a powerful, positive and enlightening evening about beating the odds and coming out "looking indistinguishable" on the other end.

First, Jenny Obando will tell her story of her son’s hard-won recovery, using visual examples, on how their family tackled the tough reality that is Autism. She will share with us what went into her successful mix including her son’s starting points, challenges and her family’s personal sacrifices in overcoming her first child’s diagnosis and what life looks like at the other end. She also has a second child recently diagnosed who is in the beginning stages of an ABA program.

Second Speaker is Dr. Glen Davies of ABLE Developmental Clinic who will talk about the power and potential of ABA treatment and if full recovery from Autism or “coming out clean with no residuals” is really possible. Our last presenter is Janet O'Reilly who will come with son Russell Pearce who is one of the "Auton Four". Russell has long since completely lost his diagnosis, has no SEA, no special tutors or supports and in fact is not even aware that he once had Autism. We would appreciate that attendees **NOT** inform Russell of his past! Any questions regarding Russell's treatment or his recovery from Autism should be directed to his Mom Janet O'Reilly, **in private**, via email or phone.

We believe that this presentation will spread the message of Hope that treatment brings … something that is needed this Christmas season.

All are welcome: Parents, grandparents, friends, teachers, therapists, judges, politicians and Service Providers. Entrance is by donation; materials, coffee and treats are always supplied. We hope that you can join us for this truly extraordinary event.

With treatment there is hope. We will help you slay your giant!

Tamara + Anissa

[Courtney Mapson]

I just had a moment while studying today, and thought about the potential costs of Autism treatment versus Cardiovascular disease treatment in Canada. I just thought I would put in my 2 cents as everyone else is!

100,000 people each year are diagnosed (or die) of having Cardiovascular disease. Cardiovascular disease is a preventable illness! According to the Canadian Health Agency, $18.5 BILLION dollars is the cost to the Canadian economy each year for cardiovascular disease treatment – which is a preventable disease!!

There are 100,000 children in Canada with Autism and 3000 new cases reported each year. Autism is not preventable, but treatable. Only $300 million is being spent on treatment – when Autism is not even preventable.

I'm not sure if I'm the only one making this connection, but how can the government turn their backs on children with Autism, when they can be treated, just like someone with Cardiovascular disease. Autism is not preventable, therefore, why hold their families accountable for funding their treatment? Yet the government is willing to spend $18.5 BILLION dollars each year on the treatment of a disease that is preventable – and is most often caused by the society in which we live(we live in a fast food world, where people work in high stress jobs, don't take care of themselves, smoke, drink etc.). How can they justify spending that much money on people who can be held accountable for their own illnesses? And yet, they then turn their back on innocent children who have a chance at a better future, and who can not be held accountable for being diagnosed with Autism.

Cardiovascular disease treatment is not said to be a fool-proof cure – neither is ABA therapy, but the point is that the government is willing to take the chance that someone might have a longer life expectancy if treated early for cardiovascular disease, however, they are not willing to fully fund ABA therapy that has research behind it showing that 47% of children in intense ABA therapy will lose their label?

This is just so mind-numbing to me! I've never heard of someone going in for a heart bypass and the doctor saying, "well, seeing as this might only be 50% effective, we'll only clear out one artery instead of these 3 that are clogged..it'll be cheaper on the system, and who knows if it will really work anyways". No, they do everything in their power to treat this disease which is self-induced!
Well, this is what the government is doing to children with Autism. They are only funding these programs partially (and minimally I must add) – and why????

Compare the EIBI funding with Cancer treatment – yes, early detection of cancer provides the best chance for recovery, however, hospitals don't stop treating people with cancer if they were not detected early enough, or if they've been in the system for too long. The key here is that yes, early detection and treatment provides the best chance for recovery, but it does not end there. Same as early intervention provides children with Autism with the best chance at becoming fully funcioning members of society, but why should we turn our back and deem these children as "untreatable" once they turn the magic age of 6?

While cardiovascular disease treatment and cancer treatment may extend one's life – what about their quality of life? Many suffer after being treated for cancer because of the side effects of treatment etc.
Children with Autism's lives may not be extended, but their quality of life is greatly enhanced.

How can the government be the one to decide which is more valuable? Every person is different! Cancer patients can opt out of treatment if they feel that their quality of life will be poor – they have a choice, children with autism don't have a choice – their parents are their voices and they are not being heard!

I am ashamed by the way our government has turned their backs on children with Autism – and ashamed by the way that the government continues to provide billions of dollars to treat preventable diseases caused by individual ignorance and bad choices. Maybe they should start holding people accountable for preventable illness caused by poor choices, and start helping those who never had any choices!

But what do I know…I'm just a student!

[Courtney Mapson]

I just had a moment while studying today, and thought about the potential costs of Autism treatment versus Cardiovascular disease treatment in Canada.

100,000 people each year are diagnosed (or die) of having Cardiovascular disease. Cardiovascular disease is a preventable illness! According to the Canadian Health Agency, $18.5 BILLION dollars is the cost to the Canadian economy each year for cardiovascular disease treatment – which is a preventable disease!!

There are 100,000 children in Canada with Autism and 3000 new cases reported each year. Autism is not preventable, but treatable. Only $300 million is being spent on treatment – when Autism is not even preventable.

I'm not sure if I'm the only one making this connection, but how can the government turn their backs on children with Autism, when they can be treated, just like someone with Cardiovascular disease. Autism is not preventable, therefore, why hold their families accountable for funding their treatment? Yet the government is willing to spend $18.5 BILLION dollars each year on the treatment of a disease that is preventable – and is most often caused by the society in which we live(we live in a fast food world, where people work in high stress jobs, don't take care of themselves, smoke, drink etc.). How can they justify spending that much money on people who can be held accountable for their own illnesses? And yet, they then turn their back on innocent children who have a chance at a better future, and who can not be held accountable for being diagnosed with Autism.

Cardiovascular disease treatment is not said to be a fool-proof cure – neither is ABA therapy, but the point is that the government is willing to take the chance that someone might have a longer life expectancy if treated early for cardiovascular disease, however, they are not willing to fully fund ABA therapy that has research behind it showing that 47% of children in intense ABA therapy will lose their label?

This is just so mind-numbing to me! I've never heard of someone going in for a heart bypass and the doctor saying, "well, seeing as this might only be 50% effective, we'll only clear out one artery instead of these 3 that are clogged..it'll be cheaper on the system, and who knows if it will really work anyways". No, they do everything in their power to treat this disease which is self-induced!
Well, this is what the government is doing to children with Autism. They are only funding these programs partially (and minimally I must add) – and why????

Compare the EIBI funding with Cancer treatment – yes, early detection of cancer provides the best chance for recovery, however, hospitals don't stop treating people with cancer if they were not detected early enough, or if they've been in the system for too long. The key here is that yes, early detection and treatment provides the best chance for recovery, but it does not end there. Same as early intervention provides children with Autism with the best chance at becoming fully funcioning members of society, but why should we turn our back and deem these children as "untreatable" once they turn the magic age of 6?

While cardiovascular disease treatment and cancer treatment may extend one's life – what about their quality of life? Many suffer after being treated for cancer because of the side effects of treatment etc.
Children with Autism's lives may not be extended, but their quality of life is greatly enhanced.

How can the government be the one to decide which is more valuable? Every person is different! Cancer patients can opt out of treatment if they feel that their quality of life will be poor – they have a choice, children with autism don't have a choice – their parents are their voices and they are not being heard!

I am ashamed by the way our government has turned their backs on children with Autism – and ashamed by the way that the government continues to provide billions of dollars to treat preventable diseases caused by individual ignorance and bad choices. Maybe they should start holding people accountable for preventable illness caused by poor choices, and start helping those who never had any choices!

But what do I know…I'm just a student!

[Deleted User]

Hey Guys –

Just though I'd pipe in with 2 "thoughts":

1. What exactly happens to an individual who is born with a harelip that does not receive medical treatment? And how much does this corrective treatment cost? We know that with treatment one can go on to become the AG of BC…

And

2. If the Laws don't actually exist to protect our kids as we thought they did, then I think we need to get into politics and **create** the health care system we all thought we had. I also think that the judiciary needs reform too, so that the "spirit" of the law is upheld, not just the letter. WOW: with a diagnostic rate of 1 in 165 (and each of those individuals has parents, grandparents, etc)… and we are spread out across the land: sea to sea to sea.

So what I am suggesting is that we take some inspiration from the farmers (we have a Federal Minister of Agriculture and a national reimbursement program for Farmers to help them preserve their "quality of life" from year to year), the "Calendar Girls" and Jimmy Stewart in "Mr. Smith Goes to Washington". We're loud, we're smart, we're driven … and now that the courts have let us down we can not afford NOT to do this…

And why on earth would the rest of Canada **choose** to leave a morally bankrupt gang of Pirates (we know what they do to young children with Autism) to guard the health care till when they could have a Parent, a Mom or Dad, who has a track record of dedicating their focus to fixing their kid (not an easy thing), potentially selling off everything they have in the process, and then turning back to help others.

Bottom-line: ABA Parents **believe** in health care. We are use to making the absolute most of each and every dollar, without out cutting too much away so that no progress is made. And of doing the math (i.e. looking at a cost-benefit analysis and making a decision based on hard data) And isn't that someone you'd rather trust with the National and Provincial cash boxes, regardless of how Autism affects your life?!?!

So stay in Canada and fight for the right to reshape this country into the one you thought you had before November 19, 2004. There are elections just around the corner. No one said it would be easy, and others have demonstrated that they will not do our bidding, so now we must move the mountain …let’s make fully funded Autism Treatment happen in **this** lifetime.

Please consider and email taml@telus.net : Recovery Is Possible; but first we have to fix the system.

t

[David Chan]

Hi all,

I just had this flash, as I am reading about Mr. Plant's next
apperance on TV.

It really doesn't matter what questions we ask him, he will just
continue to parrot the status quo about 30 million dollars they
have spent. Frankly, I am getting a little tired of hearing about
it.

I finally realized that he's the head lawyer in BC, he knows
nothing about Autism, and frankly, he doesn't give a rodent's
colon, about it either. He won, the p—ing contest about who
gets to decide social and health policy. The Supreme court let
them be the big bully in the school yard.

I guess I am doing two things right now:

1) I am venting

2) I would like all of you creative minds out there to help me
think this one through; that is:

exactly, how do you deal with a bully, You've already gone to
principal, and he's still laying a beatin' on you,

What do you do ?

At this point I'm open to all comers
Chime in, with your ideas.

The only criteria is that you can't say, just change zip codes.
The reason is, YOU may stop getting the beating, but someone
else is just going to become the next runt that gets beat on.

I look forward to all the ideas that going to come from this.

Mr. P's Dad

P.S. be constructive, I don't know anything about Geoff
personally, and I really don't care. I don't think we need to have
personal attacks or comments, just really cool and novel ways of
cleaning house that's workable and that will advance our cause
in a timely fashion.

TTFN

[Barbara Rodrigues]

Hi Tony:

I don't know who you are using but you need to get her creditionals – where she was trained – she should have her Masters Degree and ultimately have been trained under a reputable consultant or firm.

That said – yes the ABLLS is compatible with an ABA program but I don't think the Lovaas clinic uses it – they have their own specific program chart I think (I am not up on their code anymore though).

But the ABLLS is only a tracking tool – I think some of the Government hacks are using it also so be careful- just to do it does not make one an expert anymore than by me reading on how to brain surgery and then preforming it.

So get her resume & creditionals and more importantly family references and call them. Call FEAT and see if they have heard of her.

But the ABLLS is a nice easy detailed grid to start with – by no means is it the be all and end all of what our kids need – but it's a nice beginning of things to work on.

Good luck to you.

Barbara

[Super Dad]

I know everyone is busy writing letters, but if anyone wants to take a break to answer one question: I interviewed one consultant who claims to practice Lovaas ABA. Her primary assessment/tracking tool is ABLLS. I know Sundberg/Partington ABA practioners use ABLLS. My question: is ABLLS compatible with Lovaas ABA? What tool do Lovaas practioners use?

Thanks.
Tony (Leo's dad)

[Mike & Jean]

ATTENTION ALL PARENTS…..

When F.E.A.T. of B.C. was formed in British Columbia in 1996 our mission was to: ensure that children with autism had access to publically funded medically necessary treatment. To enjoy the same right to health care as every other Canadian child.

Let me assure you all that today our mission remains the same. We parents have been left alone to right this wrong.

We will continue the work until our children have what they deserve.

Planning the next steps is in the works and will be communicated in the near future. Right now however, each and every reader of this board should download the petition available at the home page. Get 25 signatures and send or deliver it to your MP.

"The only thing necessary for the triumph of
evil is for good men to do nothing."
– Edmund Burke

Jean Lewis,
Director, F.E.A.T. of B.C.

[Barbara Rodrigues]

Regarding – Be very afraid.

Michelle is right unfortunately. Many of you do not remember the pre-Auton days but they were very, very different. Each social worker/area manager had the power to deny or grant a certain amount of funding to a parent based mainly on the social worker’s personal preference. If you had a sympathetic social worker – you may get some funding or your social worker (like mine did) might hold you while you cried and tell you there wasn't any funding to be had. Everything was income tested so no matter what you paid out – you were ineligble if you made too much. It was mainly like going to ask for welfare and being treated as if they (the social worker) were giving you money from their own pockets. It was pretty degrading.

It was a battle and only the strongest won or gained a minute amount of funding. At times these “contracts” were broken and funding denied – or when the contract ran out – you were cut off funding completely. This happened to my son first when he was 4 years old for 16 months – and again when he was 7 years old for 11 months. Both times I had to get the Children’s Commission to intervene and go to Tribunal and then we would get partial funding back. BUT THERE IS NO LONGER A CHILDREN’S COMMISSION – THE LIBERALS DISMANTLED IT AND REPLACED IT WITH NOTHING.

In the last few years – we have all basked in the protection of the Auton decision – the Liberals have supplied some funding to under 6, less to over 6. We have been relatively left alone – but things have been drastically changing within the MCFD – and soon each region will be allowed to grant how much and to whom money goes to – these people to the best of my knowledge are not physicians nor are any of them experts in the field of autism. So far – autism funding has been left out of this equation – but that was then – this is now – now that the Supreme Court of Canada has denied our children any rights.

Six years ago – things were so different – so horrible and Sabrina started a movement to forever change the face of autism treatment and delivery.

We all know many of the consultants arrived because of the Auton decision and the ability for available funds to parents to pay for treatment. Many of our therapists pursued this field in their studies. They went to the US and came back educated and further trained to help our kids as consultants. The dream of full funding for our kids was just a decision away. I mean Alberta paid, soon B.C. would. The Liberals promised they would fund autism treatment and that they wouldn’t appeal – well you know the ending to that one.

Will the Liberals take away funding – I would suspect they will – maybe not until after the election (they like to screw you after they get back into office). Go take a look on the FEAT site for Broken Promises.

The thing is for years (probably without realizing it) but you have had it very easy compared to before – basked in the glow of the Auton case and the Judges ruling. So like Dave said – let's get moving. We are all going to have to pull up our socks – put on our walking shoes – get our pens ready – our voices strengthened – and begin our greatest battle (yet again). There are more of us now and we have the ability to make more noise – more publicity – we have more power now.

We are all our kids have – let’s not let them down.

Barbara
Jeremy’s Mom & Advocate

"We know how rough the road will be, how heavy here the road will be, we know about the barricades that wait along the track, but we have set our soul upon a certain goal ahead, and nothing left from hell to sky shall ever turn us back."

– Vince Lombardi

[Author]

Replies