[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Andrew Kavchak]

Hi Folks,

My son was diagnosed in 2003.  However, before the specialist gave us the diagnosis, my wife and I were already researching.  Our research led us to the DSM, ABA, etc.  The Ontario “Preschool Autism Program” at the time was providing IBI/ABA programing (and direct funding) to families.  The Ottawa Branch of the Ontario Autism Society provided us with an information package.  The social worker at the hospital referred us to the Preschool Autism Program.  And of course, there was FEAT BC.  The website, and the people.  FEAT BC provided us with much helpful background and information.

Why do I mention this?  Well, some media coverage is now coming out about the budget and the millions being allocated to the creation of the new website.  Here is one news report:

Montreal groups who deal with autism react to Ottawa’s plan to fund national autism strategy

If you watch the video, there is a clip, I believe, with someone from the organization in Montreal that will be receiving lots of money to contribute to the creation of this new website.  In one clip he suggests that such a new website with information is necessary because there’s nothing out there.   He suggests that there are “no resources”, “no information on where to get services”, “no library”, “no tools”, etc.  Good grief!  It seems to me that what he said is misleading and not entirely accurate.  There is lots of information that is available….one just has to look, and look, and look.

What I find really confusing about the press release that was issued and the wording in this story is the reference to “The goal is to give families in all regions better access to reliable, evidence-based resources once they’re hit with an autism diagnosis.”  What does that mean?  Is the “resource” in question the information about ABA, or it is the provision of the ABA (i.e., the therapy team of therapists, etc…)?  It seems like all they will provide is information, and a library where you can borrow things (presumably books, manuals, teaching aids, etc.).  If that is it, why don’t they say they will provide “information” instead of “resources”?

However, the suggestion that there is nothing out there is a direct critique of the already existing federal government website that was created following the federal Health Minister’s announcement of the creation of a “dedicated autism webpage” back in 2006.  So after 12 years in cyberspace, it has been described as “nothing”.

 

[Andrew Kavchak]

Hi Folks,

Has anyone seen any public discussion or reaction in the autism community about the budget provisions dealing with autism that were announced yesterday?  I have not seen anything apart from a news release of two of the funding recipient organizations (see below).

It is interesting to note that the Canadian Autism Partnership Project (CAPP) that Mike Lake, the Conservative Party and some of  the CASDA folks promoted over the past two years requested $19 million over five years.  Yesterday the government announced $20 million.  I suppose the government MPs will now claim their spending plan is better because there is more money.  If I read the press release correctly, it seems that there will be another website.  All the discussion of “resources” is actually referring to content on a new website. However, none of the content will actually be anything new, as it will consist of database inventories and listings of information, listing of services, etc.  I get the impression that they are talking about repackaging or formatting the already existing information…sort of like “old wine, old bottle….but a new label!”

The wording in yesterday’s budget and in this press release is interesting.  For example, in yesterday’s budget document, there is this sentence: “Due to the varied nature of how the condition presents in different people, there are no clear best practices for managing the condition that apply to all sufferers equally.”  What does that mean, exactly?  Why was this sentence included in the budget document? Supposing the condition being discussed was not autism, but cancer…how would the sentence be understood?  It seems to me that the government is using the sentence to present an excuse for not doing anything. For some reason equality of affliction is suddenly important. Since everyone is affected differently and no two people with autism are exactly the same, then there is no way to assert that there is a universal “best practice for managing the condition”. Hence, the best the government can do is set up a website for you, as if all the other websites about autism in cyberspace that have served you to date are…no good anymore.

Similarly, the press release makes it sound like a “curated online library” will reduce “regional disparities” and offer “equitable access across the country”. Huh? I was under the impression that regional disparities and access inequality across the country had to do with some provinces offering some services and programs to local residents, while other provinces did not (which resulted in autism migration from one province to another as some families moved to access what they thought was better for their child).  But now I am confused.  If I understand the press release correctly, it was the information about programs and services that was not effectively available online which was causing regional disparities and access problems. I thought my internet connection here in Ottawa provided me with access to all autism websites across the country.  I did not think that I had any such internet-based access to information problems. But maybe I completely misunderstand what the press release is trying to communicate.  In any event, I’m so glad the press release quotes someone as pointing out that this initiative will help “avoid harmful misinformation in the online arena”.  I hope it will clear up misinformation in other places too…like government documents, press releases, etc.

By the way, it was on November 21, 2006, that federal Health Minister Tony Clement made his autism announcement that included the creation of “a dedicated page on the Health Canada Web site to guide the public to ASD information available through the Canadian Health Network and other resources”.  You can find the archived press release from 12 years ago here:

https://www.canada.ca/en/news/archive/2006/11/health-minister-tony-clement-announces-new-initiatives-autism-spectrum-disorders.html?=undefined&

Anyways, I’m looking forward to seeing how the CAPP folks will assess this alternative government initiative.

https://globenewswire.com/news-release/2018/02/27/1396511/0/en/Pacific-Autism-Family-Network-and-Miriam-Foundation-Receive-Federal-Funding-to-Help-Canadians-Impacted-by-Autism.html
<h1 class=”article-headline”>Pacific Autism Family Network and Miriam Foundation Receive Federal Funding to Help Canadians Impacted by Autism</h1>
<h2 class=”subheadline”>Government Invests in National Resource and Exchange Network to Support Canadians Impacted by Autism and Intellectual and Developmental Disabilities</h2>
Ottawa, Ontario, Feb. 27, 2018 (GLOBE NEWSWIRE) — The movement to assist Canadians living with autism, intellectual and development disabilities, and their families gained ground today when the government of Canada announced an investment of $20 million over 5 years as part of the 2018-2019 federal budget.

The funding will be used to develop two new initiatives to support the needs of Canadians experiencing autism spectrum disorder and their families. This will include $10.9 million towards the creation of an Autism-Intellectual Disability National Resource and Exchange Network (AIDE) which will provide credible and evidence-based resources for individuals and families living with autism and intellectual disabilities. Led jointly by Pacific Autism Family Network and Miriam Foundation, AIDE is the first of its kind in Canada, and will be available in a curated online library, reducing regional disparities and offering equitable access across the country.

“This investment is a historic step in helping Canadians living with autism and intellectual disabilities,” said Sergio Cocchia, Chair of Pacific Autism Family Centre Foundation. “We commend the federal government for placing importance on the development of an innovative solution that will not only help improve quality of life for Canadians living with autism and disabilities, but also navigate and avoid harmful misinformation in the online arena.”

Today, over 515,500 Canadians are diagnosis with Autism Spectrum Disorder, affecting an estimated 1 in 68 children across the country. Despite these numbers, Canadians remain at an unfair disadvantage relative to our global counterparts, with countries like the United Kingdom and Australia adopting comprehensive, national autism strategies, and 47 states in the US with legislated specific autism mandates.

In contrast, Canada is widespread with systematic barriers and regional fragmentation, preventing families from accessing the information, care and resources required to obtain and navigate a diagnosis, ultimately leading to lifelong challenges that wreak emotional, social and economic havoc. Consequently, recent Canadian reports indicate access to information is top of mind for individuals with Autism Spectrum Disorder and their families, with 74% ranking better access to information as a top priority.

“With access to reliable and credible information currently lacking and varying widely, families and people living with Autism Spectrum Disorder face unfair pressures, considerable stress, and disproportionately high costs upon receiving a diagnosis,” said Wendy Lisogar-Cocchia, co-founder of Pacific Autism Family Network. “It is time Canada steps up to the plate to deliver these much-needed resources, and this commitment from the Canadian government makes this possible.”

“AIDE will offer credible, reliable and evidence-based resources – tailored to impacted Canadian families and individuals, not academics – and available in a curated online library,” added Warren Greenstone, President and CEO, Miriam Foundation. “In addition, AIDE will reduce the disparities that Canadians face across the country and offer equitable access regardless of whether you live in Kamloops, Sherbrooke or Halifax.”

The $10.9 million investment will support the development and launch of the AIDE, which includes a centralized website and online portal, resource library, electronic asset maps, and hub-to-hub network, ultimately addressing the shortfall of resources and supports available to Canadians and families living with autism. The exchange will be built upon the touchpoints of “intervene early, intervene often, and intervene across the lifespan.”
<p align=”center”>-30-</p>
About Pacific Autism Family Network
Pacific Autism Family Network (PAFN) is a first-in-North America charitable organization with a mandate to serve the lifespan needs of individuals and families affected by Autism Spectrum Disorder and all related disorders. Founded by parents Wendy Lisogar-Cocchia and Sergio Cocchia, with the vision to break down barriers to access across the province, PAFN has collaborated with over 60 organizations to bring together essential lifespan needs for those affected by Autism, all within one network. In late 2016, PAFN opened their first location – the 60,000 sq.ft GoodLife Fitness Family Autism Hub in Richmond, and will open smaller satellites in other areas of B.C. in 2017. The network ensures that all British Columbians have access to state-of-the-art resources for assessment, treatment, education-support and research, providing a “one-stop-shop” for families looking for help in their navigation of available information and services.

About Miriam Foundation
For over 40 years, Miriam Foundation has been dedicated to ensuring that greater insight and new research improve the quality of life for all those affected with autism spectrum disorders (ASDs) and intellectual disabilities (IDs). The Foundation is committed to raising and investing funds, and providing the leadership required to: create and support developmental, clinical, vocational, residential, and respite programs for children and adults living with ASDs and IDs; offer education and training to professionals, caregivers and family members; foster specialized research focusing on improving diagnosis and developing new treatments and interventions for people with ASDs and IDs; and deliver social and recreational activities to promote inclusion.

 

[Andrew Kavchak]

Hi Folks,

So today is the annual “Budget Day” in Ottawa.  It often takes a while to digest the stuff and figure out what may or may not affect one community or another, but here is something of note.

From the “Budget Plan” document at:

https://www.budget.gc.ca/2018/docs/plan/toc-tdm-en.html

file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/budget-2018-en.pdf

Throughout the 369 pages the word “autism” comes up 19 times.

At page 174 we find the following paragraph:

Support for Canadians Impacted by Autism Spectrum Disorder

Autism spectrum disorder is a complex, lifelong neurodevelopmental disorder that can have serious health, social and financial consequences for Canadian families.

Through Budget 2018, the Government proposes to provide $20 million over five years for two new initiatives to better support the needs of Canadians experiencing autism spectrum disorder and their families. This will include the creation an Autism-Intellectual-Developmental Disabilities National Resource and Exchange Network (AIDE) to develop online resources, an inventory of services, employment opportunities and local programming for families across the country, based on their specific needs. The Network would be led by the Pacific Autism Family Network and the Miriam Foundation. Funding of $9.1 million will also be provided to the Public Health Agency of Canada to support community-based projects that will support innovative program models, help reduce stigma, and support the integration of health, social and educational programs to better serve the complex needs of families.

At page 213 there is a table which indicates on the line titled “Support for Canadians Impacted by Autism Spectrum Disorder” that there will be $5 million spent next year, followed by $4 million in each of the subsequent four years.  To me, that adds up to $21 million, but the “total” column says “$20 million”. Either there was a misprint and the first number was supposed to be a 4 instead of a 5, or they are already signaling that they don’t intend to actually spend what they say they will.

Further at pages 263  and 267 we see these paragraphs:

Supporting the Health and Well-Being of Canadians

Policy Landscape

Canada presently faces several public health challenges, including problematic substance use disorder, which is of particular concern. Understanding how these challenges affect different people differently is critical to designing effective policy solutions.

Canadian Families Affected by Autism Spectrum Disorder

Autism spectrum disorder is a complex, lifelong neurodevelopmental disorder that has serious health, social and financial consequences for Canadian families. The estimated prevalence of autism spectrum disorder in Canada is approximately 1 in 94 children aged 5 to 17 years. Studies concur that boys are almost five times more likely than girls to be diagnosed with autism spectrum disorder. Canadians affected by autism spectrum disorder regularly face systemic barriers in their pursuit of reliable information, care and resources. Due to the varied nature of how the condition presents in different people, there are no clear best practices for managing the condition that apply to all sufferers equally.

Further, at page 267 and 268 we see these paragraphs:

Impacts of Budget 2018 Investments

In Budget 2018, the Government is committed to finding evidence-based and effective solutions to these public health challenges, recognizing that there is no single option that is appropriate for everyone affected.

Support for activities that improve access to information and to research evidence on best practices and treatments for people living with autism is expected to positively affect those diagnosed with the disorder and their families and caregivers. This investment will also allow for the exploration of new and innovative ways to improve the quality of life of individuals and families affected by autism as well as their caregivers who are likely disproportionately women.

Further, at page 280, there is some discussion of the gender issue:

Chapter 4: Autism-Intellectual-Developmental Disabilities National Resource and Exchange Network

While studies can be found to show that males are four to five times more likely to be diagnosed with autism spectrum disorder than females, information on the prevalence of autism spectrum disorder and the intersection of race, sex, and geographic location is not available. As such, no gender-specific or intersectional approaches to interventions and services have been developed.

Further, at page 336 there is a table that suggests that the Public Health Agency of Canada will be allocated $4 million per year for the next five years ($20) to do “Support for Canadians Impacted by Autism Spectrum Disorder”.

In a separate document, titled “Tax Measures: Supplementary Information”,

https://www.budget.gc.ca/2018/docs/tm-mf/tax-measures-mesures-fiscales-2018-en.pdf

There is a reference to autism at page 10, in relation to training expenses for an animal (e.g., dog):

Medical Expense Tax Credit – Eligible Expenditures The Medical Expense Tax Credit (METC) is a 15-per-cent non-refundable tax credit that recognizes the effect of above-average medical and disability related expenses on an individual’s ability to pay tax. For 2018, the METC is available for qualifying medical expenses in excess of the lesser of $2,302 and three per cent of the individual’s net income.

The list of eligible expenses for the METC is regularly reviewed in light of medical or disability-related developments.

The METC currently provides tax relief in respect of certain expenses incurred for an animal specially trained to assist a patient in coping with the following impairments: blindness; profound deafness; severe autism; severe diabetes; severe epilepsy; or a severe and prolonged impairment that markedly restricts the use of the patient’s arms or legs. In order for expenses to qualify for the METC, animals must be provided by a person or organization one of whose main purposes is providing this special training.

Eligible expenses are: the cost of such an animal; costs for its care and maintenance, including food and veterinary care; reasonable travel expenses incurred for a patient to attend a facility that trains patients in the handling of such animals; and reasonable board and lodging expenses for a patient’s full-time attendance at such a facility.

Budget 2018 proposes to expand the METC to recognize such expenses where they are incurred in respect of an animal specially trained to perform tasks for a patient with a severe mental impairment in order to assist them in coping with their impairment (e.g., a psychiatric service dog trained to assist with post-traumatic stress disorder). For example, these tasks may include guiding a disoriented patient, searching the home of a patient with severe anxiety before they enter and applying compression to a patient experiencing night terrors. Expenses will not be eligible if they are in respect of an animal that provides comfort or emotional support but that has not been specially trained to perform tasks as described above.
This measure will apply in respect of eligible expenses incurred after 2017.

Finally, I did a search on the main document for the word “strategy”. It comes up 110 times in relation to existing and new “strategies”, including references to a new intellectual property strategy, new entrepreneurship strategy for women, and the development of a new engagement strategy for men and boys to promote gender equality, etc.  I could not find any reference to an autism strategy.

So what does this mean?  What is new for the autism community?  It sounds like the references to “online resources” means another website, and the programs to “reduce stigma” is more autism awareness-raising.  My initial reaction is that this is to a certain extent “deja vu”.  When Health Minister Tony Clement (as he then was) made a five-point announcement at a press conference the day before our autism demonstration in 2007 on Parliament Hill, he also announced the creation of a website (https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd.html). The website already lists “supports”, but it now sounds like it will be expanded to become an inventory of services, although I suspect that such inventories may already be available on some provincial “Autism Society” websites.  It will be interesting to find out which stakeholders made what suggestions to the Department of Finance during their budget consultations, who will claim credit for what, how stakeholders and community members will react to the autism elements of this budget, and how the opposition and the government MPs will spin the matter.  What is obvious is that the government is not taking any bold steps, but when the next election comes, they will claim that the autism box on their list of accomplishments was checked and something was done to “improve the lives of Canadians living with autism spectrum disorder”.   It is of course possible that in my review of the budget documents I may have missed something. If so, I’m sorry – it was not an intentional oversight on my part.

 

 

 

 

 

[Andrew Kavchak]

Hello Franca and Laurie,

Thanks for your question and input.  The issue of what are the programs and corresponding budgets in each province across the country is an excellent one.  It would be very interesting to see.  I regret to say that I do not have this information.

Back in 2006 the Library of Parliament Research Branch produced this summary table. Unfortunately, the reference to “funding” referred to what the families would be getting, and not the government budget.

https://lop.parl.ca/content/lop/researchpublications/prb0622-e.htm

I imagine that the Canadian Autism Society has probably assembled this type of information to analyze and use as part of their campaign for a National Autism Strategy (given that the wide discrepancies of services across the provinces has resulted in many stories over the years of “autism migration” for better services).  However, I can’t seem to find anything about this issue on their website. Perhaps it is something they will get to once their current efforts in the promotion of “autism awareness” T-shirt sales reaches their targets. If they have not done such research and put the data together, then I hope they will seriously consider doing that, or at least find out who else might have already done it so they don’t reinvent the wheel.

However, there is one thing that really needs to be understood when it comes to government spending.  At the beginning of the year, there’s the announcement of the budget. At the end of the year there’s the audited financial statements.  There is often a big difference between what the governments say they will spend on something, and what they actually do.

https://www.canada.ca/en/treasury-board-secretariat/services/planned-government-spending/expenditure-management-system/reporting-cycle.html

I remember learning this lesson when it comes to autism programs very early following my son’s diagnosis.  While we were on a “waiting list” for either direct funding or therapy services, my wife and I were spending a small fortune in the private sector on treatment for our son.  At the time the Ontario “Preschool Autism Program” claimed that they had a lack of resources and we were one family out of 1,200 on a waiting list.  However, the next year the Auditor General of Ontario issued a report (2004 I think it was) stating that there was $16 million “unspent” in the program.  Yeah…lack of resources.  Sure.

At the time, the Ontario government of Dalton McGuilty (oops, I mean McGuinty) announced a whole bunch of new autism resource allocations.  Lots of press releases and press conferences, etc.   I remember talking to one journalist who told me that “the problem is now solved”.  Well, about two years later we organized a protest in front of McGuilty’s constituency office, and the NDP critic Shelley Martel came to Ottawa to join our rally and speak. She had done some “access to information” act requests and indicated at the rally that she found out that millions of dollars that had been previously announced for autism programs were not spent on autism programs but were diverted elsewhere.

This is not uncommon in government.  I remember when I was a new officer with the federal government’s bankruptcy branch (Consumer and Commercial Affairs at the time), one month before the end of the fiscal year the deputy superintendent (a guy I won’t name, but he subsequently became the Chief Electoral Officer of Canada) called a number of his staff into a meeting where announced that there was still a million dollars unspent in the budget and he asked for a brainstorming session on how to spend the money.  One bright senior officer asked “What for?  There’s a national deficit”, to which the boss replied something along the lines of “Yes, I know, but we have a mandate to implement and it is our responsibility to spend the money we were allocated to pursue the mandate”.  As a result we all got new stationary and chairs, etc.  I remember that the old staplers were excellent heavy metal ones.  One day they took them away (to be stored in surplus or thrown out I guess) and gave us these new cheap plastic ones that jammed up so often that I suspect many civil servants took “stress leave” because of all the subsequent stapler trauma.

I remember a few years ago the current Ontario government announced a new program that was going to reduce the treatment cut off age from six to five.  I complained to my MPP, and I remember him telling me some unmitigated BS on the phone about having to “go with the evidence”.  I tried to politely suggest to him that his “evidence” was cherry-picked by his party’s research bureau and bureaucrats who were graduates of the “How to Lie With Statistics” course from the local public policy manipulation institutes.  After several months of intense campaigning by many parents in the autism community (and a lot of bad press), the government flip-flopped and announced a reversal and big increase in spending on autism programs, etc.  My MPP did not call me to tell me about any “new evidence”…which just goes to show that in politics “evidence” is only one factor and that “following the evidence” is occasionally cynically trotted out by some politicians whenever they think they can use it to stifle serious discussion and make themselves look like responsible types.

Personally, I don’t believe that the amount they say they will spend on autism programs will actually be spent on them, and time will tell when the public accounts (audited financial statements) are subsequently produced (if anyone from our community actually bothers to look them up).  As the mother in the Global News story asked, “where is it all going?”.

 

 

[Laurie Guerra]

Hello Andrew and Franca,

The Dir. of Operations at Autism BC, Andrew Pinfold has been gathering information on provincial autism budgets across the country. Apparently Québec’s plan is grossly underfunded. AFU funding alone in BC is 75 million, then add respite, at- home program and Ministry of Education transfers and the Québec program looks even worse.

I’ve asked Andrew Pinfold to join the Feat of BC’s Discussion Forums so he can add to these discussions.

[Franca Pastro]

Hi Andrew,

In the Quebec protest article, the author states that “Autism-rights advocates claim Quebec’s $29-million action plan is nothing compared to Ontario’s investment of $330 million for children with autism.”  Do we know what the BC’s or other provinces’ budgets are?

Thanks,

Franca

[Andrew Kavchak]

Hi Folks,

Global News did a report about an autism protest in Quebec yesterday.  It is available here:

Parents protest and call on Quebec to step up autism services

 

[Andrew Kavchak]

Hi Folks,

I just came across an interesting article and study about the lifespan of adults with autism and the risk of death by injury. I bring it to your attention because I suspect many of us did not anticipate this (I certainly did not), and I post it here because I do not recall seeing anything in any public policy debate about the average length of life for people with autism, any studies on the issue, the risk of injury causing death for people with autism, and the implications (which are potentially huge).  This is not a pleasant topic, but something we should be aware of and can’t avoid.

http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2017.303696

https://www.cnn.com/2017/03/21/health/autism-injury-deaths-study/index.html

 

[Andrew Kavchak]

Hi Folks,

One of the great things about out democracy is that a few parties take turns running the show, and (apart from a few exceptions), one of the great checks and balances against the inevitable corrupting effect of power is that those in power tend not to stay there forever.  Being relegated to the opposition benches after a time in power is a good thing for many politicians (although they won’t admit it) because it gives them some more time to reflect and get humble.  Personally, I always find it interesting to note the creative and imaginative things that opposition members think up once they are in opposition, and not while they were in power and could actually do something.

One example, many years ago, was that of Andy Scott, the MP from New Brunswick. As you may recall, he was a Cabinet Minister during the Chretien years.  During that time, I am not aware of his actually have done anything on the autism front.  I did read an article once in the newspaper that said he mentioned the word “autism” once or something, and I tried to contact his office to follow up, but his office did not bother to reply to me.  At that time, if he actually did anything, it was behind closed doors and somewhat secret.  However, once he was in opposition…oh, boy,….suddenly he was a crusader who tabled a Motion for a National Autism Strategy or something, provoked debates in the House, and temporarily assumed the role of champion in the House for our community.  The Motion was passed, but was non-binding (motions are not law), and proved to be symbolic and was quickly forgotten.

Any other examples?  Yes!  Today, it is Pierre Poilievre, the Conservative MP. When he was first elected, he was in opposition and he came to our autism rallies and denounced the Liberals for ignoring the plight of Canadians with autism with all his might.  After a little education for him about the community’s challenges, he had an Op-Ed published in the influential Ottawa weekly “The Hill Times” in which he stated that the government needs to amend the Canada Health Act to ensure that autism treatment is provided by the provinces under Medicare. It was clear, unambiguous and in black and white. He accused the Liberals of hypocrisy, but then he showed that hypocrisy ran in his veins too. A few years later Poilievre was a Cabinet Minister on the government side.  Liberal opposition member Shawn Murphy tabled a Bill that would do precisely what Poilievre previously wrote was needed (note: Murphy did not table the Bill while his party was in power, but only after the election when he was in the opposition benches). And guess how Poilievre voted?  Unfortunately, he voted against it.

And now that Poilievre is in opposition again, suddenly the plight of the disabled is a cause of concern for him again.  So on Thursday, February 15, 2018, he rose in the House and made this statement:

Persons with Disabilities

<b>Hon. Pierre Poilievre (Carleton, CPC): </b>

Mr. Speaker, imagine if someone told us that the harder we work, the poorer we will become. That is exactly what governments tell people with disabilities. When they get jobs, they suddenly lose benefits and immediately start paying taxes, sometimes losing more than they gain. All parties and levels of governments are to blame.

The opportunity for workers with disabilities act seeks to solve the problem by requiring that Finance Canada calculate how much workers lose for every $1,000 they earn. If they lose more than they gain, the finance minister would be required to propose changes to federal taxes and benefits to fix it. Provinces would be required to meet the same standard as a condition of receiving $13 billion of social transfers.

While the bill would not micromanage provincial programs, it would instill one simple principle: that people with disabilities must always be allowed to earn more in wages than they lose in taxes and clawbacks.

_______________

So what is this Bill he is referring to?  It is Bill C-395, a Bill he has now sponsored which has the long title: “An Act to amend the Federal-Provincial Fiscal Arrangements Act” and the short title: “Opportunity for Workers with Disabilities Act“.  It was tabled and given first reading on February 5, 2018.  The text of the Bill can be read here:

http://www.parl.ca/DocumentViewer/en/42-1/bill/C-395/first-reading

So…on the assumption that this Bill will die on the Order Paper when the next election writ is dropped (as most opposition Private Members Bills do), imagine that after the next election Poilievre is back in Cabinet with his government in power, and some MP in the opposition tabled a Bill that was word-for-word a replica of this Bill C-395… would Poilievre vote for, or against?  Of course, it depends on what his leader and party whip would tell him (and his party caucus) to do at the time, but if history is any indication, I suspect he would vote against it. In fact, if I were a betting man, I would bet the house on it!

In the meantime, it will be interesting to observe how much he invests in the promotion of the Bill and where, when, and how, he chooses to promote his association with the Bill’s contents.   While the Bill appears to have some genuine merit which could potentially benefit many members of the autism community, after years of observing Poilievre and other opportunistic politicians, it is hard to get excited,especially when history demonstrates that the chances of disappointment are probable.

[Andrew Kavchak]

Hi Folks,

One of the great things about out democracy is that a few parties take turns running the show, and (apart from a few exceptions), one of the great checks and balances against the inevitable corrupting effect of power is that those in power tend not to stay there forever.  Being relegated to the opposition benches after a time in power is a good thing for many politicians (although they won’t admit it) because it gives them some more time to reflect and get humble.  Personally, I always find it interesting to note the creative and imaginative things that opposition members think up once they are in opposition, and not while they were in power and could actually do something.

One example, many years ago, was that of Andy Scott, the MP from New Brunswick. As you may recall, he was a Cabinet Minister during the Chretien years.  During that time, I am not aware of his actually have done anything on the autism front.  I did read an article once in the newspaper that said he mentioned the word “autism” once or something, and I tried to contact his office to follow up, but his office did not bother to reply to me.  At that time, if he actually did anything, it was behind closed doors and somewhat secret.  However, once he was in opposition…oh, boy,….suddenly he was a crusader who tabled a Motion for a National Autism Strategy or something, provoked debates in the House, and temporarily assumed the role of champion in the House for our community.  The Motion was passed, but was non-binding (motions are not law), and proved to be symbolic and was quickly forgotten.

Any other examples?  Yes!  Today, it is Pierre Poilievre, the Conservative MP. When he was first elected, he was in opposition and he came to our autism rallies and denounced the Liberals for ignoring the plight of Canadians with autism with all his might.  After a little education for him about the community’s challenges, he had an Op-Ed published in the influential Ottawa weekly “The Hill Times” in which he stated that the government needs to amend the Canada Health Act to ensure that autism treatment is provided by the provinces under Medicare. It was clear, unambiguous and in black and white. He accused the Liberals of hypocrisy, but then he showed that hypocrisy ran in his veins too. A few years later Poilievre was a Cabinet Minister on the government side.  Liberal opposition member Shawn Murphy tabled a Bill that would do precisely what Poilievre previously wrote was needed (note: Murphy did not table the Bill while his party was in power, but only after the election when he was in the opposition benches). And guess how Poilievre voted?  Unfortunately, he voted against it.

And now that Poilievre is in opposition again, suddenly the plight of the disabled is a cause of concern for him again.  So on Thursday, February 15, 2018, he rose in the House and made this statement:

Persons with Disabilities

<b>Hon. Pierre Poilievre (Carleton, CPC): </b>

Mr. Speaker, imagine if someone told us that the harder we work, the poorer we will become. That is exactly what governments tell people with disabilities. When they get jobs, they suddenly lose benefits and immediately start paying taxes, sometimes losing more than they gain. All parties and levels of governments are to blame.

The opportunity for workers with disabilities act seeks to solve the problem by requiring that Finance Canada calculate how much workers lose for every $1,000 they earn. If they lose more than they gain, the finance minister would be required to propose changes to federal taxes and benefits to fix it. Provinces would be required to meet the same standard as a condition of receiving $13 billion of social transfers.

While the bill would not micromanage provincial programs, it would instill one simple principle: that people with disabilities must always be allowed to earn more in wages than they lose in taxes and clawbacks.

_______________

So what is this Bill he is referring to?  It is Bill C-395, a Bill he has now sponsored which has the long title: “An Act to amend the Federal-Provincial Fiscal Arrangements Act” and the short title: “Opportunity for Workers with Disabilities Act“.  It was tabled and given first reading on February 5, 2018.  The text of the Bill can be read here:

http://www.parl.ca/DocumentViewer/en/42-1/bill/C-395/first-reading

So…on the assumption that this Bill will die on the Order Paper when the next election writ is dropped (as most opposition Private Members Bills do), imagine that after the next election Poilievre is back in Cabinet with his government in power, and some MP in the opposition tabled a Bill that was word-for-word a replica of this Bill C-395… would Poilievre vote for, or against?  Of course, it depends on what his leader and party whip would tell him (and his party caucus) to do at the time, but if history is any indication, I suspect he would vote against it. In fact, if I were a betting man, I would bet the house on it!

In the meantime, it will be interesting to observe how much he invests in the promotion of the Bill and where, when, and how, he chooses to promote his association with the Bill’s contents.   While the Bill appears to have some genuine merit which could potentially benefit many members of the autism community, after years of observing Poilievre and other opportunistic politicians, it is hard to get excited,especially when history demonstrates that the chances of disappointment are probable.

[Author]

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