Living on the Spectrum

BC Parents Fight Back - Autism Rally - Nov, Friday the 13th

2009-11-10T10:56:00.000-08:00

Our government let this boy die.
Stop more from suffering the same fate.

BC parents are tired of watching the government allow the needless suffering and death of children and parents.

How can we allow the kind of suffering that would lead a person to murder their own children and then commit suicide themselves? Suffering so bad and tragic that killing your family was a better alternative can not be acceptable in Canada.

In Canada, this sort of suffering exists and recent deaths are easy to find:

http://www.cbc.ca/health/story/2009/09/29/edmonton-murder-suicide-confirmed.html

http://network.nationalpost.com/np/blogs/toronto/archive/2009/10/27/autistic-murder-case-experts-talk-of-pressure-on-the-family.aspx

http://www.torontosun.com/news/torontoandgta/2009/10/27/11536711-sun.html

http://www.canada.com/health/Edmonton+autism+murder+suicide+about+funding+Disabilities+expert/2052224/story.html

http://www.disabled-world.com/health/neurology/autism/autism-ontario.php

Stop this insanity. Attend the next rally to show our government the unnecessary suffering and death of our children must stop!

Where:
Premier Gordon Campbell’s Constituency Office
3615 West 4th Ave
Vancouver, BC

When:
Friday, November 13th, 2009
12:00 Noon

Why should you attend?

The recent tragic deaths of two Canadian children with autism, killed at the hands of their own parents, is a wake up call! The status qua is putting the health of children and their very lives in jeopardy.
September’s announcement by the Ministry of Children and Family Development has shown that our government is not concerned about the rights and needs of some of its most vulnerable citizens.
No legislation or mandate exists to deliver health care to children with autism or to protect and enshrine their right to their medically necessary treatment. What little individualized funding being provided now is in jeopardy of being taken away.
Autism is an epidemic! According to the Center for Disease Control, it now affects one in every 100 children in North America.
It is time for our provincial government to recognize its responsibility to act and to demonstrate leadership for the rest of Canada!

Who should attend?

Parents, grandparents, friends, consultants, therapists, anyone who is concerned about this injustice to our children. We urge you all to attend this rally!

For more information email: abarocks@gmail.com

For the First Time, a Census of Autistic Adults

2009-10-05T20:29:00.000-07:00

Among the many great mysteries of autism is this: Where are all the adults with the disorder? In California, for instance, about 80% of people identified as having an autism spectrum disorder (ASD) are 18 or under. Studies by the Centers for Disease Control and Protection (CDC) indicate that about 1 in 150 children in the U.S. have autism, but despite the fact that autism is by definition a lifelong condition, the agency doesn't have any numbers for adults. Neither has anyone else. Until now.

Full Article: For the First Time, a Census of Autistic Adults

A participant eats during a day program for autistic adults run in New Jersey.

A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures

2009-10-03T09:21:00.000-07:00

Witch doctors have been preying on parents with children with special needs for the longest time. Parents always have hope they can help their children and will usually spend their last dollar to do what they can to give these kids a better life.

As a parent with a child diagnosed with ASD I have been through the array of sales pitches and "professionals." Most of whom just want my money.

With the help of a few other parents I discovered ABA and the science behind it. The secret is, look for the data. If the "discovery" is only a year or two old there is no way they have any worthwhile data. Ask for the scientific journals and don't accept glossy brochures.

This article presents a case study in the misrepresentation of applied behavior analysis for autism based on Morton Ann Gernsbacher’s presentation of a lecture titled ‘‘The Science of Autism: Beyond the Myths and Misconceptions.’’ Her misrepresentations involve the characterization of applied behavior analysis, descriptions of practice guidelines, reviews of the treatment literature,
presentations of the clinical trials research, and conclusions about those trials (e.g., children’s improvements are due to development, not applied behavior analysis). The article also reviews applied behavior analysis’ professional endorsements and research support, and addresses issues in professional conduct. It ends by noting the deleterious effects that misrepresenting any research on autism (e.g., biological, developmental, behavioral) have on our understanding and treating it in a transdisciplinary context:

http://paulcoynephd.typepad.com/files/a-case-study-in-the-misreprensentation-of-applied-behavior-analysis-in-autim--the-gernsabacher-lectures.pdf

Some excerpts from the case study:

Gernsbacher did not review all the applied behavior-analytic research in autism. That would have been too great a task. Over 750 articles were published between 1960 and 1995 (DeMyer, Hingtgen, & Jackson, 1981; Matson, Benavidez, Compton, Paclawskyj, & Baglio, 1996) and hundreds more since then.

What Gernsbacher reviewed was a subset of the comprehensive programs for early intensive behavioral interventions (ABA-EIBI) that she referred to as ‘‘the Lovaas-style of behavioral treatment.’’3 Based on her review, she concluded that the effectiveness of applied behavior analysis for autism was another myth and misconception and that the gains made during treatment were due to the children’s
‘‘development,’’ not to ABA-EIBI.

What stunned me, then, was how she reached her conclusions: She inaccurately represented research reviews, wrongly characterized applied behavior-analytic interventions, misleadingly appealed to history, inaccurately conveyed research designs, selectively omitted research results, and incorrectly interpreted intervention outcomes. Although misrepresentations are often only a minor
nuisance in science, they can have harmful consequences, which I believe
hers did (and do), both locally and more broadly.

The local consequences included misinforming KU’s community members about ABA-EIBI; hundreds of KU students about a science of behavior and its application; current
and prospective ABS majors about a course of study at KU (and careers); and KU staff, faculty, and administrators about scholarship in a department renowned for its research in applied behavior analysis. The broader consequences include Gernsbacher’s probable influence on behavioral, social, and cognitive scientists who teach, conduct research, and provide services in autism; funding agencies and foundations who set priorities and allocate resources for autism research and applications; and state and federal agencies that set standards for autism services and funding. She has standing and stature in most, if not all, of these venues: in
APS, of course, but also in the American Association for the Advancement of Science (AAAS), where she is a psychology section member at large, and in the National Science Foundation (NSF), where she is on the Advisory Committee for the Social, Behavioral, and Economic Sciences. Although Gernsbacher surely gained these highly respected positions by conducting first-rate science, the hallmarks of her science were largely absent in this section of her lecture.

shhhhh! Autism is skyrocketing

2009-10-02T18:45:00.000-07:00

Recently the Center for Disease Control (CDC) reportedly revised the rates of autism for the United States and the numbers are alarming. In 2007, the reported numbers were 1 in 150. Today, those numbers have skyrocketed to 1 in 100, and some say the numbers are closer to 1 in 89. According to David Kirby, the data is due to be released any day now.

CDC quietly revises autism rates to 1% of US children
http://www.wellsphere.com/endurance-training-article/cdc-quietly-revises-autism-rates-to-1-of-us-children/813102

Confirmation that the Autism Rate is now 1 in 100
http://adventuresinautism.blogspot.com/2009/08/confirmation-that-autism-rate-is-now-1.html

CDC quietly revises autism rates to 1% of US children
http://www.examiner.com/examiner/x-9121-LA-Special-Needs-Kids-Examiner~y2009m9d26-CDC-quietly-revises-autism-numbers-to-1-of-US-children

Autism Rates Rocket – 1 in 38 British Boys – Cambridge Study
http://childhealthsafety.wordpress.com/2009/03/21/autism-rates-rocket/

CDC to Announce New 1 in 100 Autism Prevalence Rate
http://adventuresinautism.blogspot.com/2009/10/cdc-to-announce-new-1-in-100-autism.html

What to Cut

2009-10-01T19:40:00.000-07:00

The government is cutting funds so fast I guess it is bound to make a few mistakes. Olympics are coming and we need more cash! Cut the funding for children's therapy! Big business wants to light up the north for mining and we need 400 million! Quick let's cut funding to the arts! Oh taxes are down and we are in a deficit! Okay let's stop providing help to the battered, abused and fearful women and children! Oh darn it! Maybe that was just too immoral... Okay we take it back.

Solicitor-General Kash Heed's office dropped a press release saying the government was backing away from the $440,000 cut to programs for family-violence victims -- mainly battered, abused and fearful women and children.

Full story: http://www.theprovince.com/news/Liberal%20backdowns%20just%20keep%20coming/2054175/story.html

Good on you Canadian government. So nice to see you care...

Shame on you

2009-10-01T11:51:00.000-07:00

A follow up to my post on Canada: you have blood on your hands:

That tragedy was not the first nor will it likely be the last as nothing much changes from these tragedies.

In 1996 six-year-old Charles-Antoine Blais was held underwater by his mother’s hands until he drowned. In 1997 Danielle Blais was given a 23-month suspended sentence after being allowed to plead guilty to manslaughter. According to reports, Ms. Blais was depressed because she lacked the financial support that she needed for her son who had autism, and intended to commit suicide after killing him. "In the summer of 1997, Ms Blais was sentenced not to jail, but to a year in a community residential centre, and she was hired as a representative--a sort of role model--by Montreal's autism society, as promised by Ms Lahaie. [President of Montreal's Autism Society]

This couple just wanted support to care for the son at home(provide care givers,etc) and was turned down - their son loved to sit in the motorhome and listen to country music - that was what was playing when they found all 3. Yet, nothing has changed.....

On 30 December 2001, the bodies of three people were found in a parked motorhome in Kelowna, British Columbia. 57 year-old Maurice Baulne, and his wife Belva Baulne, age 54, and the couple's 34-year old disabled son Reece Baulne, died from carbon monoxide poisoning. Reece had learning difficulties, therefore the Canadian law treats his death as murder, because he could not consent to the suicide pact. The couple left a suicide note explaining that a application for financial assistance to the Canadian Government was turned down. The Baulnes had developed health problems of their own and were fearful of Reece's welfare once they were no longer able to care for him.

Small wins

2009-09-30T09:22:00.000-07:00

It is amazing how much effort it takes to do small things like take our son to the eye doctor. Something that would normally require very little thought takes us a huge amount of effort as most infrastructure, personnel and procedures are not setup with Autism in mind.

So it was an amazing win for us to go to the eye doctor and have a successful visit with our son. Not only did we confirm his vision is good but he did not have a melt down. He did not bite anyone. He did not cry uncontrollably. He did not throw up. Instead he asked the doctor some interesting questions and cooperated with every request.

My wife and I celebrated this small win last night. This is all it took to make us happy and allow us to forget the craziness that is around us these days.

Thank goodness for small wins.

Canada, there is blood on your hands...

2009-09-29T21:39:00.000-07:00

The deaths of a man and his 11-year-old autistic son on Sunday were the result of a murder-suicide, Edmonton police said Tuesday, after receiving confirmation from the Edmonton Medical Examiner's Office.

To say that this can't happen for other families, Phillips said as her eyes welled up with tears talking about the tragedy. The dad just felt he couldn't do it any longer and he just didn't think he could get the help he needed.

Full article: http://www.cbc.ca/health/story/2009/09/29/edmonton-murder-suicide-confirmed.html

Imagine the agony this parent was in. He had given up hope and had to resort to this to avoid further suffering. Take a moment. Close your eyes. Imagine the extent of the suffering that you would endure before you killed your son and then yourself. Imagine.

I know some of you who are not parents of Autistic children have a hard time imagining this. You are the lucky ones as this happens more than you want to know.

Health Minister substitutes National Autism Strategy for Five Point Autism Action Plan

2009-09-29T18:20:00.001-07:00

Darn it! 2 minutes after my last post I am amazed yet AGAIN!!!
This is getting to be too much. Who needs TV.

But this one I actually get. Okay so a National Autism Strategy would be all encompassing and make the provinces consistent and fair right? Way too confusing! Now hold your hand up and spread your fingers. Five right? (I'm right). Well how about we make it a five finger ACTION plan! Oh ya lets change it a bit so it sounds more grown up. How about Five Point Action Plan? That has a nice ring to it. I personally think they need to start saying words like "proactive" or "super" or "mega" or maybe even "supersized" five finger action plan. Geez I could be in government. I digress...

Here is what our tax dollars paid for of September 14 2009:

House of Commons
Hansard
Monday, September 14, 2009

Questions on the Order Paper

Question No. 337--

Hon. Shawn Murphy:

With regard to the November 2006 funding announcement made by then-Health Minister Tony Clement detailing a five-point plan for autism spectrum disorder (ASD) funding in Canada, what are the details
regarding:

(a) the status of the commitment to sponsor an ASD stakeholder symposium;

(b) the status of the commitment to establish a chair focusing on interventions and treatment for ASD;

(c) the status of the commitment to undertake a consultation process to see how an ASD surveillance program could be set up through the Public Health Agency of Canada;

(d) the status of the commitment to establish a dedicated web page on the Health Canada website with ASD information and resources;

(e) the status of the commitment to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal health portfolio level; and

(f) how much federal funding these and other autism programs will receive during the fiscal year 2009-2010?

Hon. Leona Aglukkaq (Minister of Health, CPC):

Mr. Speaker, in response to (a), with regard to the commitment to sponsor an ASD stakeholder symposium, in November 2007, a national symposium on autism research was hosted by Canadian Institutes of Health Research, CIHR, to share knowledge and to support dialogue on future research priorities. The report from this Symposium is now available on the CIHR web site.

In response to (b), with regard to the commitment to establish a chair focusing on interventions and treatment for ASD, funding for an autism research chair to address issues related to treatments and interventions was announced at Simon Fraser University on October 20, 2007. This joint initiative with the Government of British Columbia is being supported with $1M in federal funding over five years. Efforts to establish a Chair are currently underway by Simon Fraser University.

In response to (c), between November 2007 and May 2008, the Public Health Agency of Canada, PHAC, undertook a consultation process to examine options for the development of an Autism Spectrum Disorders, ASD, surveillance program in Canada. This process was guided by a steering committee comprised of ASD experts, and included three
components:

1. an environmental scan of the current scope of ASD surveillance activities in Canada;

2. a technical workshop on the information needs and data collection options for ASD surveillance; and

3. a broader stakeholder consultation on the information needs of ASD communities and how they would like surveillance information disseminated to them.

The results of this consultation process will be used by PHAC as it undertakes a new national surveillance system for developmental disorders such as autism. This initiative, a component of the federal government s 2008 action plan to protect human health from environmental contaminants, will be a national sentinel surveillance program to track and assess the linkages between environmental contamination and developmental disorders such as sensory impairments, autism spectrum disorders and attention deficit hyperactivity disorder. Using centres for surveillance expertise, data will be collected from a variety of local sources such as schools, hospitals, community paediatricians, and other health professionals.

In response to (d), with respect to the commitment to establish a dedicated web page on the Health Canada website with ASD information and resources, the website has been created. It provides facts and information on ASD, as well as links to Canadian and International autism organizations. The website can be found at:
http://www.hc-sc.gc.ca/hc-ps/dc-ma/autism-eng.php As well, in 2007-08 Health Canada provided $50,000 to the Offord Centre for Child Studies (a research centre dedicated to improving the life quality of children with mental health and developmental problems) to support the dissemination of the latest evidence pertaining to autism through the Canadian Autism Intervention Research Network, CAIRN, via the Network s website. The Canadian Autism Intervention Network, CAIRN, is a group of parents, clinicians and scientists working to conduct research in early intervention in autism, and is part of the Offord Centre for Child Studies. The web page on the Health Canada website links to the CAIRN website in order to direct Canadians to evidence-based information of a more clinical nature, and complement the content on the Departmental site.

In response to (e), with respect to the commitment to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal health portfolio level, this was done in 2007. Since then, the Health Policy Branch has become the Strategic Policy Branch, and the Chronic and Continuing Care Division within the Branch holds the lead on the ASD file.

In response to (f), with respect to federal funding for autism related initiatives during fiscal year 2009-10, the federal government has committed $200,000 to Simon Fraser University, as part of the $1M over five years for the Autism Research Chair. In addition, the federal government has a multi-year contribution agreement with the Offord Centre for Child Studies, with $25,000 in 2008-2009 and $50,000 in 2009-10, for a total of $75,000 over two years. This funding will support the development and dissemination of research priorities in Autism Spectrum Disorders, ASD, among parents, policy makers, researchers, health professionals, health educators and individuals with ASD. This work will be accomplished through a national on-line survey, a national conference in fall 2009, and by further updating the Canadian Autism Intervention Research Network website, which is the primary bilingual source for disseminating evidence-based information about ASD in Canada. In fiscal year 2009-10, CIHR has currently committed approximately $3.4 million towards autism research.

Are Buildings More Important than Children?

2009-09-29T17:58:00.000-07:00

Just when I thought it could not get any more weird in the Autism community with Mary Polak making off the hip decisions that are impacting almost a hundred families, I see something that blows my mind again.

Yes, the BC government is seemingly sending me an endless amount of blog information...

In the news today:

Autism-centre proposal draws criticism
Government funding for autism should go to services and programs instead of bricks-and-mortar, says one B.C. autism support group upset over the premier's promise to build a new autism centre.

Full article is here: http://www.canada.com/theprovince/news/story.html?id=fb0f1f55-f884-4ebc-a24c-9e1f987aafb7

Besides the obvious fact that big business and dollars in someone's pockets have again trumped the lives of children the following paragraphs of the news release really made me sit up in my seat:

Government funding for autism should go to services and programs instead of bricks-and-mortar, says one B.C. autism support group upset over the premier's promise to build a new autism centre.

Since when did we need a building? Who is going to sit in it? Researchers? Ah... which ones? Most decent researchers are in the US. Are they coming here? My money is on this becoming just another government bench post for government clerks to perch while their pensions max out. Who voted for a building?

Vancouver hoteliers Sergio Cocchia and Wendy Lisogar-Cocchia are drawing up the proposal for the centre. Costs are pegged at about $34 million, with private fundraising to pick up the rest.

Our money is going to hotel developers? How was that done? Who decides who gets the contract to build this building? What does private fund raising mean? Obviously private firms are not going to lose money so how does this work?

But Dawn Steele of Moms on the Move, which conducted an informal web survey, says that 90 per cent of 340 respondents rejected the idea of a new centre.

Do you think a 90% rejection response to this building sends a clear signal to government? My bet is they don't care and go for the bucks.

On Friday, Minister of Housing and Social Development Rich Coleman said there is no "hard and fast budget" for the building of the centre, but it is "notionally between $20 to $25 million" and will come out of his portfolio. Programs will be delivered by the Ministry of Children and Family Development, he added.

How about there being "no hard and fast budget for Autism therapy funding?" Hey there is an idea. Oh I forgot, when we actually do business and money goes into individuals pockets we are not so worried about the taxpayers money or budget restrictions or fiscal constraint. Those are words to direct at voters/tax payers.

Steele called the proposed centre "well-intentioned," but not the best use of taxpayers' dollars.

Can the government "well intention" some proper therapy funding for these poor kids?

At this rate I am sure we will have yet another press release tomorrow that will announce the government is building special bathtubs for government officials who want to fill out forms for Autism funding.

Parents of Children with Autism - These cuts and change are to help with the HST. NOT!

2009-09-29T12:38:00.001-07:00

Okay so Polak has flip flopped around with her reasoning on why she wants to screw with our children.

Previously she said that the EIBI was not proving to be effective. It turned out her data was three years old. Now she is saying she wants to spread the money around to be fair.

Okay two things:

1) The EIBI program was designed as a trial by the government to see if more than 8 hours a week made a significant difference. The study that was released showed beyond any doubt that it does. Okay study done. Let's roll it out to all. If anyone wants to see this study I will post it. (Stand by for a future post where I show the cost to society of not providing this therapy.) Her "spread it around equally" theory is also full of holes. What am I supposed to do with 2K? Even though 2K is of slight value to my son I think it is extremely unfair to the other 70 families who are now turned upside down. Mary, you can keep my 2K if it prevents the suffering of these other families.

2) Mary's other big argument is that: "Invoice funding will save parents money with the HST" Okay so let's look at exactly what was said by the government:

The introduction of HST in July, 2010, is another issue of some concern. It is clear that if parents were to remain on Direct Funding, they would be required to pay the HST in instances where GST is payable. However, government ANTICIPATES that as a result of the shift to Invoice Payment, families will not be impacted by the HST.

I have made the key word bold in case anyone did not see that governese. Do they think we are stupid??? Obviously.

BC Health Sciences Association blasts government for cutting autism support

2009-09-29T12:35:00.000-07:00

You know you are screwing up when associations with names like "Health Sciences Association of British Columbia" are saying you made a bad decision. I wonder if Mary Polak reads these...

VANCOUVER, September 25, 2009 — The Health Sciences Association of British Columbia (HSABC/NUPGE) says cutting support for needy children is an indefensible way for the BC government to cope with budget issues.

HSABC president Reid Johnson says no amount of "government spin" can gloss over the impact of a $3 million cut the Campbell government has announced in support for autistic children across the province.

Full article:
http://www.publicvalues.ca/ViewArticle.cfm?Ref=00488

Mary Polak continues to get slammed by the media

2009-09-28T20:59:00.000-07:00

Geez I almost feel sorry for her. What!?! Okay no I don't. But it seriously makes me wonder what these politicians think about all day.

Is it that hard to read the research that early intervention with ABA works? Duh... Is it that hard to understand that it costs about 80K a year to do this? Duh... Is it that hard to understand that 2K extra for my family is a joke while you destroy 70 others? Duh... I could go on and on but I am sure all the parents understand and perhaps so does Mary by now...

My Hero: Stephan Marinoiu

2009-09-28T17:32:00.001-07:00

While in BC we have Mary Polak causing grief and frustration to already suffering families and children there is a shining light in Ontario. Stephan Marinoiu is on a hunger strike to bring awareness of the funding problems. If you remember Stephan is the same gentleman who, out of desperation to get help for his son, walked all the way to the parliament building only to be welcomed with a tour of the library. Yet he does not give up. His methods are extreme but people are taking notice. He is doing what many of us think about everyday. Stephan, you are my hero. I sincerely hope you stay safe and get the support your son needs.

Autism Speaks New Video: I am Autism

2009-09-28T10:08:00.000-07:00

While I am not a big fan of the organization Autism Speaks (they seem to take the donated Canadian funds to the US as they are a US company) they did make this super cool video that is the best I have seen.

Mary Polak's Autism Funding Slashing - Reviews

2009-09-27T18:23:00.001-07:00

I was curious what others thought about this and it was amazing to see the poor reviews Mary is getting on this decision. Not only was it a bad call but she did it without consulting the community and then backtracked on her reasons to do it. Well here are other reviews:

Slashing support for children is no way to balance budgets: HSA
http://www.surrey.com/bc/?p=4732
VANCOUVER, Sept. 23 CNW –

Government spin won’t help autistic children and their families,” HSA President Reid Johnson said today in response to a massive government cut in support for autistic children across British Columbia.

Autism Funding Cuts
http://anotherrhyme.blogspot.com/2009/09/autism-funding-cuts.html

Do you live with a child with Autism? Have you had a child at the age of four sit in fits of rage lashing out at you because they cannot explain to you verbally what it is that is bothering them or because you tried to hold their hand? Have you then sat with that same child a year later who has had sessions with speech therapists, interventionists, and behavioural analysts and has begun to communicate either verbally or with picture cards and can handle physical contact? Having had a summer of working with children with ASD through Recreation Integration Victoria, kids who had been in the EIBI programs and those that had not, it's amazing to see the difference those intervention sessions provide to both the child and their families.

Autism Funding Debate Rages on
http://autismsymptoms1.net/2009/09/27/autism-funding-debate-rages-on/

THIS IS GOING TO COST A LOT OF MONEY IN THE FUTURE. AND NOT JUST THIRTY, FORTY, FIFTY YEARS DOWN THE ROAD WHEN THIS GOVERNMENT’S LONG GONE. WE’RE TALKING TWO OR THREE YEARS WHEN THESE KIDS GO TO SCHOOL, NOT PREPARED, NEEDING MORE SUPPORT, MORE SPECIAL [EDUCATION], MORE TEACHER TIME

Autism cut decision was made based on a 2003 program review
http://willcocks.blogspot.com/2009/09/autism-cut-decision-was-made-based-on.html

Children's Minister Mary Polak's budget cuts include elimination of an intensive early intervention prorgam for autistic pre-schoolers.
Defending the decision last week, Polak offered a number of reasons for killing the program.
The most convincing was that despite the much higher cost to help the children, the program delivered no better results than alternatives costing less than one-third the amount per child.
"We have to look at the outcomes and when it comes to what was occurring, . . . we were not seeing any appreciable improvements in the outcomes for those kids," she said.
So what was that based on?
According to the ministry, Polak was referring to a review done in 2003, when the program was in its first full year.
The report on the ministry website is a Powerpoint summary of the research presented in 2005.
"The evaluation project was initiated at the very beginning of the EIBI and IEII programs," it notes. "So, the results only apply to the children and families who were initially involved in these programs, which have developed considerably since the evaluation was completed. Results may be different if the evaluation was conducted today."
And by today, the review's authors were referring to 2005.
It's a lame - even phony - justification for making a policy decision affecting children facing great challenges.
And it's misleading for Polak to suggest the ministry actually had a sound basis for assessing the program's effectiveness before killing it.

How low can Gordon Campbell go?
http://powellriverpersuader.blogspot.com/2009/09/how-low-can-gordon-campbell-go.html

And the assault on the autistic in this province has continued,I heard rumours of more cuts in that area and they were announced today,and I have to say that for the first time in my life I feel ashamed to live in this province.

Autism Funding in BC: There is nothing more unequal than the equal treatment of unequal people
http://housdenadoption.blogspot.com/2009/09/autism-funding-in-bc-there-is-nothing.html

As many people have heard, autism funding in BC has been cut.
This was announced the same week that the provincial government held a $500,000.00 pre-olympic event for the Premier, his cabinet, friends and family.
Sadly, these types of events may serve to illustrate the priorities of the BC government.

These were some of the more details blog posts but there are dozens of sites and angry comment postings about Mary's latest tweaks.

Mary Mary quite contrary...

2009-09-25T21:58:00.000-07:00

So the latest spin on the Mary Polak war on providing Autism Funding is that the dismantling of the Direct Funding is to save the parents from paying the HST.

Have you ever heard such nonsense? Everyone knows that the Direct (government) directed funding takes months longer, is inefficient and will result in costing all taxpayers much more and providing the children less therapy.

What is equally disturbing is this person who goes by the name "Josef" who seems to be Mary's online spin doctor. Notice on all her blogs, facebook page and other Internet sites where almost everyone is shooting her down this person named "Josef" calls her a hero and makes these crazy justifications that no one agrees with.

Ever wonder who "Josef" is? Well.... Wait for it... He is....

AN AMERICAN! His real name is Josef A Kunzler.

Not that I have anything bad to say about Americans but honestly what is he doing promoting Mary Polak's position and beating down parents on these online blogs?

You can find more about Josef on Mary Polak's Facebook page or by visiting these sites:
http://www.linkedin.com/pub/josef-kunzler/13/230/784
http://www.facebook.com/search/?q=mary+polak&init=quick#/profile.php?id=1283735136
http://www.flickr.com/photos/skagitims/
http://twitter.com/skagitIMS
http://www.skagitims.biz/
http://www.vimeo.com/skagitims
http://www.youtube.com/user/SkagitIMS

The next time he tells you he is an expert on Autism and Autism funding in Canada, ask him if he is a parent. Ask him if he is a resident of Canada. Of BC? Well to give him credit, he can spell Autism.

This has bad written all over it. I am not proud to be a Canadian today.

Mary Polak declares war on children with Autism

2009-09-23T21:33:00.000-07:00

You know we are living in dark days indeed when the government begins dismantling the therapy funding for helpless children. I suppose it is a smart move by the government as these children can’t voice their concern over the negative impact this will have on their future and huge increase in cost it will later have to society.

Is this the type of government we voted for?

Approximately one in a 150 boys is diagnosed with Autism and this continues to rise at an increasing rate.

In a recent 50 million dollar Lotto 6/49 jackpot, the odds were one in 13,983,816. Hundreds of thousands of parents bet on this jackpot. Your odds are considerably better with an Autism diagnosis.

Save your lottery money, you will need it if your child is diagnosed.

The government of British Columbia offers these families $20,000/year to cover therapy up to the age of six. Therapy costs approximately $80,000/year. This therapy is scientifically proven to be effective and is well documented. This means families who have a child who has been diagnosed with Autism have to find $60,000 from somewhere. This is often debt.

Most of these parents divorce. Selling the family house to fund therapy is common. The sale of most items of value to generate funds for therapy is a given. A life of guilt and depression is to be expected. Alienation from friends and family will occur.

Their life as they knew it is now over.

If they are lucky their child won’t bolt and get lost for days. If they’re lucky their child will learn to refrain from self damaging behavior. If they’re lucky, their child will learn not to throw up after eating. If they’re lucky, their child will learn to speak a few words. If they’re lucky their child will not be teased, ridiculed, beaten up and harassed on a daily basis at school. If they’re lucky their child will graduate from high school.

Most won’t be that lucky.

Last week, without any consultation or warning, the Mary Polak (Minister of Family and Children Development) pulled the rug out from under these parents who are already enduring so much by eliminating their ability to control these funds. The government, who have consistently failed to understand the needs of these families has taken it upon itself to eliminate the option to do Direct Funding (direct from the parents to the service providers) and has instead dictated that these parents have to tow the line of mandated Invoice Funding where the government pays the service providers. This will increase overhead costs, delay the payments, reduce the quality of care and will make paying these service providers extremely difficult therefore reducing the amount of usable funds and discouraging assistance.

The frustration in the Autism community lies in the fact that these parents, who are on the brink of financial collapse, already spent precious funds to fight the government in the courts a few years ago to protect their children and won the Auton lawsuit (Auton vs BC Gov). The government at that time did finally put Direct Individualized Funding into place. This allowed parents to fund their child’s ABA programs and since that time parents have built a strong, quality base of ABA service providers that is making a real difference to these children. The ABA program takes a child who would otherwise be lifelong financial burden on the society and in many cases makes him/her self sufficient.

In these financial times are we prepared to sacrifice the children? Do we want to go down this low moral road? Are we prepared to make the small amount of funds these parents receive that much less and that much more difficult to put into action? Why is the government spending more tax money just to make it difficult for these parents?

For all that is good and decent, please spare the children.

Stress levels

2008-10-23T19:39:00.000-07:00

Long time since I have updated this blog. Just have not had the time.

Treatment is still going strong. Increasing hours of ABA at increasing intervals. Things are going well. Speech is increasing, dexterity is increasing and normal play is pretty good. Besides the Lovaas style ABA we always try to make him ask for whatever he wants and try not to let him just motion for stuff. It is a continual task.

Having a child on the spectrum is HIGH stress. All the parents (hundreds that I know) have it. Some are higher stress than others but we are all well above average. It's interesting though as not much outside the house stresses me now.

An interesting side effect of this is work seems easier and all those other life things are really nothing to bother about now.

Just take it a day at a time and do what you can.

Getting things done

2008-10-23T18:16:00.000-07:00

Over the last few months many people have asked me what they should do for their children. I feel a bit like a broken record but I have to remember this is new for each parent who asks me and it is probably one of the most important questions they will ever ask. "My son was just diagnosed with being on the ASD spectrum, what should I do now?"

Well, I always begin the same way. It had to believe but a diagnosis may actually be a good thing. If your child is showing signs of slower than normal development, go see your doctor and get a referral to get him tested (I say "him" and "boy" simply because most diagnosed children are male).

Getting diagnosed will allow you to begin with getting treatment which is something you want to do as soon as possible as it takes a while to get the funding and infrastructure set up.

If you think your child may be on the spectrum but received a negative diagnosis then you may want a second opinion. While the process is much better than it ever was, it still has room for improvement.

The next big step is funding and a consultant. Don't wait for the funding. Go after a consultant asap. Go to all the parent groups and other events and begin networking. Get to know all the parents in your area and learn all the things that are working for them.

Once you get your funding make sure you do your paperwork properly otherwise you will have headaches later. Again, work with other parents to see how they do it. The parent group is huge and you will be amazed at the support they provide. I personally know hundreds of parents in the same situation as myself and all will drop everything to assist me.

The choice of therapy is the next big decision. These days this is getting much easier as there are a few schools now teaching the Lovaas ABA and people are getting more educated on what works. Avoid all things too good to be true and remember to ask parents!

A good consultant is well worth the hunt. Once you have one build a team.

Hell by default

2008-04-22T11:18:00.000-07:00

I would highly recommend to anyone who wants to live a happy and care free life to never look at the Canadian medical system. Shocked? Let me explain.

Sure we have universal medicare and I am all for that. I think paying a bit more in taxes and having a great medical system that is accessible by all is really beneficial. But this is not what we have.

Instead, we have a bloated, outdated system that is causing immense amounts of harm.

The best way to explain this might be for me to give examples. These examples are from my experiences and are likely not as horrific as many. In fact I have heard so many these days I could fill pages and pages with third party examples (the breast cancer scandal is a simple but huge example). People are dying due to incompetence not their illness.

Take one of my sons for one example. He throws up at least once a day and this is slowly causing long term damage to his digestive system. Remember how yucky it feels to have your stomach contents pulled back up through your throat last time you drank too much or had food poisoning? Now imagine if this was part of your daily routine? Except it is not a scheduled event so it occurs when you are shopping, watching TV, traveling in the car, speaking to someone or simply trying to eat your dinner. It usually means a complete change of clothes, a shower and floor/furniture clean up.
Having seen multiple specialists at Children's Hospital none were yet to diagnose the issue. Some said it was normal (hello?) and some wanted to do tests which involved my son drinking either strawberry or chocolate milk and laying on a cold bench very still. Ah.... Perhaps we can review the typical behavior of an autistic child... my son throws up on normal milk. What do you think he is going to do if you try chocolate or strawberry? It won't get past his lips.

Children's Hospital is so much better than all other hospitals in the Vancouver area (I don't even consider going to others) but they lost our son's records and called us the other day saying they found his info and wanted to continue testing (6 months later). How can you lose a file???

Another example is of a 18 year old autistic child who was put in a home. They complained that he was having behavior problems. When investigated it was discovered that he could not talk but had perfect sign language. Do you think anyone in the home could sign? Nope. What the hell? So, you are taking a disabled child and putting him into a situation where he can not communicate. This is like taking you and getting you permanently drunk, duck taping your mouth and dropping you in Germany (assuming you don't speak German). How fun would that be?

If you have a child or family member who needs medical treatment please know that you are going to be dismissed and forgotten unless you fight tooth and nail for help.

For their sake don't assume the system will take care of them. Be aggressive and don't take no for an answer.

Speech

2008-03-15T16:04:00.000-07:00

These days things all seem to be coming together. My son is now speaking and expressing himself. He still has a lot of behavioral issues and we are still pouring money into his therapy but we actually see gains!

He points in the direction he wants to go and says "that way!" When something disapears he says "All gone!" When someone says hello to him he responds (sometimes) with "Hello..."

He may not be able to have a conversation yet but it makes us over the moon happy that he is now very interested in language. My wife and I constantly talk to him and never give up with the conversation. One technique I have found that seems to work for him is to make each day a theme day and focus on just one or two words that day. He may or many not say the word but at least he gets to hear it at least a hundred times in different situations. I often find he will then say the word a few days later.

Of course we also have a great team of therapists a new consultant who is night and day different from our last one (read previous post for that horror story) and awesome OT and SLP.

It takes a lot of time and energy to play with kids and talk to them with interest for a few hours but this seems to work. Get into their play and treat them as the most interesting person for those few hours each day. Turn off the computer and the cell phone and pull out the playdou!

Communication of any type is so vital. If your doing PECS, sign language or a few words it all helps bridge the gap. For me that is key.

Name tags

2008-03-06T12:42:00.000-08:00

I have never been a fan of name tags. To me a name tag is a redundant aid that makes people walk up to you and point at the name tag and say, "Hello J-O-E?" (using the name Joe for example). Without a name tag we would be forced to say, "Hello, my name is Fred. Pleasure to meet you." Seems a little more real.

Name tags were the theme at the parent ASD meeting last night. I was unpleasantly surprised to see the state of our ASD community. What a mess!

Out of 30 parents I noted the following:

- Most were doing some strange form of therapy without any scientific backing. These parents seemed to be confusing "popular" with "effective." If 90 out of 100 people do a specific therapy it only means 90 like it. Until a single scientific study is done proving effectiveness it is simply the "flavor of the day!"

- Most parents had no sense of urgency. One parent had waited a year before getting a consultant. Even at this meeting she was clueless about how to proceed. While I have patience for stupid and lazy people, I don't have patience for stupid and/or lazy parents. When your child is 6 you not only loose most of the funding but also the child may go to regular school so you have a lack of both time and money. This combined with the optimal time to teach a child (2 to 6) is all a good reason to move your ass when it comes to providing therapy for your child.

- Many of the parents seemed to have given up. They were talking about choices such as if they should redo their kitchen or spend more on their child. Hello? Not going to Mexico this year? WTF? This blew me away. Not being rich myself I knew that once our child was diagnosed I would likely never go on another vacation again. In all likelihood I would end up selling my own home to fund the therapy. Are these parents sick? On crack? I am not sure why this surprises me actually. I've heard crazy stories about parents who have team meetings with pizza and beer too. I guess here are all sorts.

Anyways it was nice for my son to play with the other children for the couple hours we were there.

Medicare for Autism NOW Rally in Burnaby

2008-03-03T12:14:00.000-08:00

Went to the Medicare for Autism NOW Rally in Burnaby this weekend. Have to give a big thanks to the FEAT BC people for their great work. Hundreds of people turned out and there were several news reporters.

It was interesting as one reporter spoke to me and I distinctly remember her asking me this question: "...but isn't it all really well organized? I mean there are so many people with Autism now you would think it would be..."

At this point I had to wonder where the question was going. Was this a rhetorical question? Was this a leading question or was she really serious?

Parents know all too well about all the problems (too many to list) but the rest of the world seems like they are in denial.

I plan to make a presentation for these people showing the percentage chance that their next kids will be diagnosed with ASD and then asking what they would do? The changes of this are getting higher and higher. Heck if no one else on your street has a child with ASD then your the exception. 1/100 is good odds. You are more likely to have a child with ASD rather than get in a car accident this year.

Now imagine what you would do? Search the Internet. Call the government. Think about it. Confused? Now take that confusion and mix in despair, outrage and disgust.

Welcome to the world of Living on the Spectrum.

Avoiding the question

2008-02-20T10:12:00.000-08:00

Was listening to CBC today. Someone from government was justifying the new budget. She was being asked some hard questions and was doing very well at deflecting each one.

When the question of mental health came up she managed to completely avoid it. It seems government is allergic to the issue of mental health. I say this because every time the issue comes up their lips swell and they are unable to speak (or at least say anything meaningful.

It is laughable when I hear politicians say that they "are taking the issue seriously" or even more entertaining is "we are putting funds into setting up a research facility." Hello? How about putting some real money into the hands of care givers and then helping to setup some real standards that ensure quality of care?

I never had any faith in this "represented" democracy system we have but now I think it is simply absurd. It is about time parents took responsibility for their votes.

We get the government we deserve.

Do we deserve to sell our homes to pay for our children's care?
Do we deserve to fear our own deaths only because we know then our children we be sent to a terrible home where they will live a life of hell (or on the street)?
Do we deserve to have to hire sub standard consultants because there are no standards?

You tell me. I have one question for our elected representative and it will be:
"Will you lobby to have Autism (mental health in general for that matter) part of Medicare just like cancer patients?" The answer is yes, or no. Nothing else.