[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]

Congratulations to Beverley for a FANTASTIC op-ed in the Ottawa Citizen!

Sharpe: A national autism strategy would help families and save money

Bravo!!!

[Andrew Kavchak]

Hi Folks,

Yesterday, (Wednesday, April 3, 2019) was another day that autism came up on the Hill. The annual “Autism on the Hill” lunch-time rally took place which appears to have followed the usual format.  A few “self-advocates” spoke, followed by a few politicians.  This year Green Party Leader Elizabeth May showed up and gave a short speech of support.  However, one of things she spoke about seems to have been about how great autism is. She specifically referred to a young Swedish environmental activist that she finds inspirational and added something about the environmentalist doing her great activism not in spite of, but because of, her autism (ergo: autism is good and can benefit the environment???).

Of course Mike Lake also spoke at the rally and brought his son to stand beside him. I remember meeting Mike Lake when he first came to Ottawa after his initial election in 2006 and during our conversation I pointed out that the then-current CDC prevalence figures were “1 in 150”, to which he dismissively replied “I don’t believe that!”.  Well, over the years he has brought his non-verbal son to stand beside him at many speaking engagements and I wonder whether it is because he wants to show people that people with autism are around in society, or is it because he wishes to establish some credibility with the audience by showing tangible proof of the disorder in his family, or is it because from his days working in marketing for the NHL hockey team in Edmonton he believes that any campaign can benefit from having a mascot and he’s committed to making his son “the face of autism” that the community will recognize and cheer for whenever he’s mentioned? I don’t know.  But one thing is clear, Mike Lake has skillfully managed to make his annual one-minute “autism awareness day” statement in the House of Commons something of a performed adulation to his son that is anticipated to exceed the indelibility of his previous annual statements.

Yesterday he read what seemed to be another ode to his son and capped it off with what looked like a well-rehearsed gesture of blowing a kiss to his son in the stands (he confirmed in a statement on twitter that he “practiced”).  As usual, he got a standing ovation and then retweeted messages he got from fans, including references to tears and making them cry.  I find it amazing that with all the attention and opportunity that he gets at this occasion he would not say a single word about the needs of the community and what the government could and should do to meet them, but instead choses to publicly display his love of his child over and over (is that what we elect and pay politicians for?). 

However, one should acknowledge references to public policy during his short speech at the noon-time rally. He did refer to the community’s “almost getting” a National Autism Strategy “a few years ago”. I think he must have been referring to his Canadian Autism Partnership project which involved the development of a business plan that the government rejected.  However, at the time, I don’t recall reading any statement of his suggesting that the CAP project was a “National Autism Strategy”.  It looks like historical “rebranding” and myth-making.  Careful scrutiny of the evolving narrative is an interesting lesson is “politics”. 

Another MP also made a statement about autism awareness in the House yesterday which was more traditional. I assume that he did not get the same standing ovation.

Autism and PDD Society of Laval

<b>Mr. Fayçal El-Khoury (Laval—Les Îles, Lib.): </b>   

“Mr. Speaker, April is Autism Month. I want to take this opportunity to recognize the commendable efforts of the Société de l’autisme et des TED de Laval. Founded in 1995, this non-profit organization works to improve the quality of life of Laval families. Its talented team carries out innovative, inclusive projects for the organization’s clients and promotes the rights and interests of people with autism spectrum disorder and fragile X syndrome. I am honoured to announce that I have been named ambassador for the Société de l’autisme et des TED de Laval. I will be proudly participating in awareness activities all month long.”

So that was an eventful few days in Ottawa.  It will be interesting to see whether CASDA’s “blueprint” for a National Autism Strategy gets adopted in the election platform of any political party as we approach the October election.  Any bets?

[Andrew Kavchak]

Hi Folks,

The federal government just made a historic autism announcement.

https://www.canada.ca/en/public-health/news/2019/04/government-of-canada-announces-first-project-under-the-autism-spectrum-disorder-strategic-fund.html

There is a new “ASD strategic fund”.  And the first project is over $800,000 for…

[Andrew Kavchak]

Hi Folks,

There were four autism-related statements in the Senate yesterday (copied below).

Tuesday, April 2, 2019.
<h2 id=”11″>World Autism Awareness Day</h2>
<b>”Hon. Wanda Elaine Thomas Bernard: </b>Honourable senators, I rise today to recognize World Autism Awareness Day. This morning I had the pleasure to attend the fifth annual Canadian Autism Leadership Summit. This summit is important for us policy-makers to hear details of provincial diversity, national initiatives and community-based services as we work together on advancing a national autism spectrum disorder strategy.

I wish to extend my gratitude to Canadian Autism Spectrum Disorders Alliance and our colleagues, Senators Munson and Housakos, as well as all ASD leaders from across Canada, including several self-advocates, families and service providers who came together to address ASD issues.

It is so important that we use our voices, our privilege as parliamentarians and our commitment to help Canadians living with autism, their parents, families and advocates work together for change.

At this morning’s opening session entitled “Nothing About Us Without Us,” the presentations highlighted the value of truly listening to lived experiences to build authentic alliances with self-advocates as we implement a national strategy. We heard about the move from autism awareness to autism acceptance. I would also like to add the need for action; so, autism awareness to autism acceptance, followed by action. It’s time to leave tokenism behind.

We also must not forget to address intersectionality issues. I would like to call attention to the intersection of race, racism and disability that impacts children from racialized communities who live with autism. Individuals with several marginalized identities will have different life experiences. One area of concern to me is children of African descent, who are either not diagnosed early enough, are often misdiagnosed, or their families remain stuck in a phase of denial. As we move forward together, I invite you to consider the ways in which those children and adults with autism who are racialized are differently impacted and how we can work together to dismantle those systemic barriers.

A blatant example of the intersection of racism and disability is during police street checks. Last week, Halifax Regional Police reported that young Black men aged 15 to 25 are nine times more likely to be stopped; added to the complexity of living with autism, such interactions can easily escalate.

Honourable colleagues, we must remember to include the valuable lived experiences in our policy development and action the requests of ASD self-advocates — Nothing about us without us.”

“<b>Hon. Leo Housakos: </b>Honourable senators, every year for the past several years on this date, April 2, I rise in this chamber in recognition of World Autism Awareness Day. And every year the message, unfortunately, doesn’t change. That is — we need to do more for families struggling with autism. That’s key. It’s not just the individual on the spectrum who struggles as a result of lack of funding and programs, it is the entire family. And the costs aren’t merely financial.

The quality of Canadian expertise in autism care is not in question. It is with great pride that we can acknowledge a wide variety of organizations in our great nation that are working diligently to improve what is a complex situation.

However, as we identified in the Senate’s 2007 report,<i> Pay Now or Pay Later</i>, the startling reality is that we, as a government, continue to underfund the resources needed to help an ever-increasing number of Canadian families.

A good start came under former Prime Minister Stephen Harper, when the federal government allocated $11 million over four years to support training programs for autistic adults with the hope of assisting them into the workforce. But we need to do much more.

Last year Senators Munson, Bernard, Harder and I were able to meet with the Minister of Health, Ms. Petitpas Taylor, to have a fulsome discussion about what was needed from the federal government.

I’m happy to say Minister Petitpas Taylor followed through on her promises to us that day. She visited the Giant Steps Resource and Training Centre and the Transforming Autism Care Consortium in Montreal, to see first-hand the amazing work they’re doing. She secured funding in the budgets of 2018 and 2019 for autism programs. As a result, Giant Steps, Transforming Autism Care Consortium and other programs and facilities like them across Canada are able to apply for funding through the Public Health Agency of Canada ASD Strategic Fund.

I’d like to thank the minister and the government leader for making that possible.

The fund is designed to support innovative community-based projects that will provide Canadians living with autism, as well as their families and caregivers, tangible opportunities to gain knowledge, resources and skills that can help them address the challenges of living with autism.

But there is still so much more work to be done, colleagues. We must continue to work together as parliamentarians, regardless of our political stripe, to support Canadians living on the autism spectrum.

We must not waver or allow gaps to occur in what we are doing as a federal government. Whether focusing on research and early intervention, family support services or job training, the time has come to develop a government-led national strategy to deal with this ongoing crisis. I will rise in this chamber again next year on this date and every year until that becomes a reality. Thank you, colleagues.”

“<b>Hon. Jim Munson: </b>Honourable senators, I’m also privileged to stand and recognize today as World Autism Awareness Day. April 2 is a day that is very important to the autism community and is certainly important to me.

I can’t imagine that 12 years ago at our Standing Senate Committee on Social Affairs, Science and Technology we released the report <i>Pay Now or Pay Later: Autism Families in Crisis</i>. And here we are where access and services for autism are still uneven across this country. Can you imagine, honourable senators, that there are half a million autistic Canadians? Later has arrived. The latest changes to autism services by the Ontario government are just the most recent adversity facing families in this country on the autism front. Program modifications, funding cuts, changes in the education system, government and new budgets all cause anxiety and disruption to families of children with ASD. They pay the price for this.

Governments have put programs together. There has been Ready, Willing and Able by this government right now. We’ve had the Harper government do a number of things, as Senator Housakos said. We’ve had tax credits, disability tax credits and so on. But it’s certainly not enough because families are still suffering.

This is not who we are as a nation. Why are we struggling to define policies and provide services in an equitable way to all Canadians with ASD? Why can’t we guarantee for most people with ASD a future lived to their true potential: because our leaders don’t know how to listen, because our leaders are not curious enough, because our leaders don’t look at what others are doing, because our leaders don’t know what robust consultation looks like, because our leaders are working in silos, because our leaders are uncomfortable in working together in a nonpartisan way.

This is an unacceptable approach by our policy-makers. Large, sweeping changes hurt families and persons with autism. The story in Ontario is not just Ontario’s story; it’s a story across the country of trying to deal with this issue. I congratulate the Ford government for putting enhancements in and announcing today that they will have consultations, but that should have happened a long time ago before announcing anything.

Provinces and territories need clear direction. They need a blueprint and they need a collaborative and leadership approach with any federal government — this federal government. Sit down, think outside the box. I’m tired of standing up here each and every day talking about families who are moving to get best services, families breaking up and mortgaging their homes to get the extra services. There’s a blueprint out by the Canadian Autism Spectrum Disorders Alliance. We’re going to talk about it this evening in a room upstairs. I hope you can all join us to have that conversation, because the time is now. We really need to have this blueprint. Sorry if I lost my voice, but I’m passionate about this, and I’ll get it back, but I will never lose my voice for the families dealing with autism. Thank you very much.”

“<b>Hon. Peter M. Boehm: </b>Honourable senators, I rise as well today to recognize World Autism Awareness Day. As we know, autism spectrum disorder is a severe lifelong condition that dramatically impacts the lives of those diagnosed. It also creates emotional and financial stress on their families, caregivers and communities.

Every individual with autism spectrum disorder is unique and presents a variety of complex symptoms. As the name suggests, it is a spectrum disorder, which means that symptoms are present to varying degrees and therefore require individualized assessment to determine the appropriate support services.

Responding to autism needs is not a political or partisan issue.

What I wish to say, as a father of a son with autism, who has sought services when we lived abroad, who has struggled with various governments in this province of Ontario to receive services, is that it is not easy. It puts immense strain on families.

The current initiatives taken by the Government of Ontario highlight the need to consult with those directly impacted, with regional service providers and advocacy organizations to improve governmental programs that are based on individual need.

Affecting 1 out of 66 Canadian youth, ASD is currently the most common neurodevelopmental disorder with which children and youth in Canada are diagnosed. This does not take into account all those affected indirectly by ASD such as family members, community service providers, teachers and schools, to name a few.

The need for a national strategy to improve the lives of persons diagnosed with autism has clearly been established in Canada. Children dealing with ASD deserve to have the same rights and opportunities as any other child and more so as they become adults, as our son has become.

I applaud the advocacy undertaken by Senators Munson, Bernard, Housakos and others.

Senator Munson, you were great on the radio this morning. That’s probably where you first lost your voice.

Honourable senators, it is the duty of parliamentarians to advocate for the rights of all Canadians. The Senate in particular is meant to advocate for minority voices. It is more critical now than ever to affirm our support for the autism community in Canada and around the world. Thank you.”

Are these statements not fascinating? Senator Housakos reveals that last year four Senators met with the federal Minister of Health and had a “fulsome discussion about what was needed from the federal government”.  We are not sure what the Senators proposed, but he then states that he is happy to report that the Minister “followed through on her promises to us that day”.  And what were those promises?  Funding in the budget for “innovative community-based projects” etc. I don’t see the message “Medicare for Autism Now” anywhere. Why is that?

 

[Andrew Kavchak]

Hi Folks,

Well, yesterday was Autism Awareness Day.  Two MPs spoke about autism in the House of Commons.

Tuesday, April 2, 2019.

House of Commons. Statements by Members.

World Autism Awareness Day

<b>Mr. Yves Robillard (Marc-Aurèle-Fortin, Lib.): </b>

“Mr. Speaker, today I want to mark World Autism Awareness Day, because not many Canadians know about this cause. It is more important than ever to raise awareness of autism, because the number of children being diagnosed is rising. The autism spectrum requires us to use a different approach with each person affected by this disability, but we need to do more to promote their inclusion as a group. Many children still face prejudice and encounter numerous barriers because of autism. I want to thank the Société de l’autisme et des TED de Laval for all of its efforts to educate Canadians on the reality of autism.”

<b>Ms. Linda Lapointe (Rivière-des-Mille-Îles, Lib.): </b>

“Mr. Speaker, today I would like to talk about World Autism Awareness Day. Autism spectrum disorder affects a significant number of children. In the Laurentians, it affects one in 60 children, and 90% of those affected are boys. We probably all know someone—a family member, a friend, a child or an acquaintance—whose life is affected by autism. Autism affects everyone. This issue is near and dear to me. I would like to thank the Fondation autisme Laurentides for working so hard to help children with autism and their families. Today being World Autism Awareness Day, I believe it is important to create space for an ongoing conversation about what we can do to help and support people with autism and their families. I would like to thank those of my colleagues who are proudly wearing blue as a sign that they want to talk about this and raise awareness among those around us.”

Both speakers were Liberals from Quebec.  One talked about doing more to promote inclusion, and the other talked about space for an ongoing conversation about what can be done to help and support people with autism.  In other words, the specifics of what our community has been asking for since the Auton case was heard by the Supreme Court of Canada in 2004 is simply not acknowledged.  Despite all the hoopla on Parliament Hill last Sunday and Monday with rallies and press conferences calling for a “National ASD Strategy” and the issuance of the CASDA “blueprint”, neither of these government party MPs felt compelled to even acknowledge the initiative or idea that is so dear to the hearts of so many in our community.  Of course, that’s not really surprising.  After CASDA held their Monday morning press conference announcing their blueprint for their proposed strategy, a reporter from the Toronto Star contacted the federal Minister of Health’s office and then added this at the end of her news story:

“A spokesperson for federal Health Minister Ginette Petitpas Taylor said the Liberal government “will continue to work with community groups, caregivers and all others to ensure Canadians with autism get the support they need.”“

Sounds like more of the status quo.  It suggests that they don’t intend to change their (federal) policies, which actually dovetails well with the CASDA blueprint since CASDA specifically says they are not seeking to change any provincial policies.  No change. Status quo.  Carry on.

As you all know, Mike Lake usually makes a statement on this occasion and gets a standing ovation. Apparently he did not speak in the House at all yesterday. Perhaps today he will make his statement.  There will also be the annual autism awareness rally on the Hill over the lunch hour today.

[Andrew Kavchak]

Hi Folks,

Well, it is certainly interesting to observe how things are playing out following yesterday’s CASDA press conference in Ottawa in which they issued a “blueprint” for a National ASD Strategy that they hope will have an impact during the coming election.  One of the things I find most interesting is the content of the proposed strategy and the spin that various players are putting on it.

For those who are interested, here are some preliminary observations. As background, the CASDA multitude of documents are available here:

Summit Materials

The key document is the 19 page blueprint here:

https://www.casda.ca/wp-content/uploads/2019/03/Blueprint-for-a-National-ASD-Strategy-1.pdf

They also have a summary deck on the webpage.

At page 4 of the main text they state that with “evidence-based supports, early intervention, etc. “Autistic Canadians can see significant improvements in their quality of life”.  So access to evidence-based intervention should be key, right? Well, at page 8 they address the “affordability and access” issue.  They actually state that “Applied Behaviour Analysis” can cost $80,000 a year.  As far as I can tell, this is the only reference to ABA in the entire document. (If I’m wrong, please show me where else it is mentioned.) In other words, it is not presented as the clear leading evidence-based treatment that is the core healthcare need of all newly-diagnosed children with autism. It is merely inserted in the background as an example (“such as”) of how expensive “evidence-based supports” can be.

Their description of the “access” issue does not mention the fact that ABA treatment programs, where available, tend to be offered by “social services” departments with inadequate budgets and unconscionable waiting lists.  Nowhere do they ask why is it not the provincial Ministries of Health that are providing the ABA treatment for autism and why is it not covered by Canada’s public health insurance (Medicare).

Instead, they describe the accessibility challenge as being one that involves high costs, difficulty if finding services for those with other “co-occurring conditions”, the difficulty of finding services in rural areas, and that this is particularly challenging for some sectors of society including the LGBTQ+ Canadians, etc.   To me, this description of the “access” issue is seriously flawed and omits some major problems confronted by our community.

So what is their solution to this access issue as they describe it? (1) Reforming the Disability Tax Credit, (2) Building leading ASD support into the federal health system (i.e., Indigenous people and armed forces), (3) training the next generation of ASD professionals, (4) ensure consistent recognition of ASD costs for the Medical Expense Tax Credit, and (5) Enhance the Child Care Expense Deduction.

In other words, the issue of having the provincial Ministries of Health deliver ABA treatment paid for by Medicare is not addressed at all.  To me, this should be at the core of a National ASD Strategy. Why?

(1) Because when a child is diagnosed, what is the first and most important matter to address? Implementing an ABA program pronto in order to help the child develop to his/her full potential. That’s the core priority that should be at the heart of any “National Strategy”.

(2) As a society, the more that is invested in early intervention, the less expenses are encountered in “supports” down the road.

(3) If a request for a strategy provides a lengthy list of requests that are all portrayed as being of equal importance, a government will typically pick the easy low-hanging fruit to implement (if they pick anything at all) in order to be able to check the box and say to the electorate that they’ve addressed the issue.

(4) It is discriminatory when Medicare is supposed to address the core healthcare needs of Canadians, but tells those with autism to go elsewhere.  What other group of Canadians with another distinct disorder or illness get referred to the welfare department for treatment?  The discrimination against autism has to stop and the appropriate healthcare professionals and Ministry of Health bureaucrats should be dealing with the program to deliver treatment.

So yesterday I received a call from the Toronto Star and gave an interview to a reporter about the CASDA press conference and an article subsequently appeared online with a quote of mine.

https://www.thestar.com/politics/federal/2019/04/01/advocates-urge-ottawa-to-create-a-national-autism-strategy.html

In the article, I am quoted as expressing disappointment with the strategy because the blueprint does not address funding for ABA autism treatment and the core of a national autism strategy should involve the feds taking the lead to bring the provinces around to ensuring that ABA autism treatment is provided as a medical service covered by Medicare.

So get this…on the CASDA Facebook page one parent asked the question “How can a national strategy not include ABA services?!? This is why families in Ontario are in an uproar!”

And how did CASDA respond? “it does – it includes evidence-based practices and specifically names ABA”

To which the parents replied: “Thank you for clarifying!”.

Well, the parent may think that all is well, but I think the CASDA response is “spin” and misleading.  The one reference to ABA is merely an example of “supports” that are expensive. It is a stretch to suggest that the proposed reforming of tax expenses and credits, etc. means that the blueprint “includes” ABA and imply that access to ABA treatment will be improved if this blueprint is adopted and implemented.

And my concern about the “spin” being somewhat potentially misleading is heightened by something in their deck that is on their webpage (Blueprint Remarks Presentation).  At page four the deck specifically states what the strategy blueprint is not trying to do.   It clearly states that they are not trying to “seek changes to provincial or territorial policies”!

If the blueprint and proposed national strategy is not meant to result in any changes to provincial policies, then it is a lot of stirring the pot with a view to do what exactly?….Maintaining the status quo?  Too bad the person who wrote the CASDA response to the parental question on their Facebook page did not specifically refer and mention to the blueprint not being intended to change any provincial policies.

Sometimes one gets the impression that candour is in short supply.

Another interesting spin on this matter involves the response of Mike Lake. From what I could tell, he was not at the rally on the Hill on Sunday or at the press conference yesterday. This is not surprising to me.  The theme of both events was the promotion of a “National ASD Strategy” and I’ve never heard Mike Lake express any support for such a concept. In fact, I’ve never heard him utter the words since he was elected in 2006, although he’s had plenty of opportunities to do so. (If I’m wrong and anyone knows of any instance where he publicly expressed his support for a national autism strategy, please provide me with details.) So how would he deal with the events of yesterday?  Well, on his Twitter account he posted this:

“Seeing <s>#</s><b>NationalAutismStrategy</b> trending today takes me back to one of my favourite Question Period moments, 2 years ago, when leaders of 3 federal parties called on the government to support a national strategy through the Canadian Autism Partnership. Just a matter of time now.”

Get it? He does not say he supports the blueprint for a National ASD Strategy, but instead establishes his credibility by referring to his previous partnership proposal and suggesting that it would have been the vehicle for a “national strategy”.  I read all the Hansard speeches during the debates over his motion to fund his CAP project, but I don’t remember his referring to it at any point then as a “national strategy”.  I may be wrong, but I honestly don’t remember his ever suggesting that.  But his objective was achieved.  Another parent posted this tweet that is on the “Autism on the Hill” twitter:

“Keep fighting <s>@</s><b>MikeLakeMP</b>. Every Canadian with autism, regardless of age or address, deserves the proper support from their federal government. Looking forward to your speech on <s>@</s><b>AutismOnTheHill</b>, and your continued advocacy for a <s>#</s><b>NationalAutismStrategy</b> <s>#</s><b>cdnpoli</b>”

Spin, spin, spin.

 

 

[Andrew Kavchak]

Hi Folks,

Well, I just watched the half hour video of this morning’s press conference that is posted on the CASDA facebook site.  I don’t get it. I just don’t get it.  I wonder whether any of the three speakers has a child on the spectrum?  I know Senator Munson does not, but what about the other two speakers?  I suspect that most parents had the same (or similar) questions as I did when my son was diagnosed.  “What can you do about it?” Once you understand that the cause and cure of autism are still not known to the medical and scientific communities, the next piece of information involves treatment.  “Is there a treatment which can help the child to develop to his or her full potential?”. What a relief it is to know that in fact the medical and scientific community has known for over three decades now that the application of Intensive Behaviour Intervention therapy based on principles of Applied Behaviour Analysis can help children with autism develop to their full potential. I’m not going to review the history and stats of the Lovaas and replication studies….you know them.  However, the point is that at the time of diagnosis, taking advantage of the plasticity of the brain and getting access to the treatment is the top priority. It is crucial and it can have huge impacts on the child’s life at every stage of the lifespan.  So to me, and many other parents, the feds should adopt a National Autism Strategy that has, at its core, a program of funding negotiated with the provinces that involves the provision of the treatment by the Ministries of Health and covered by Medicare.  All the other things like employment and housing assistance, etc. are important and should eventually be addressed in a strategy, but if you ask for everything and the kitchen sink at the first instance and portray them all as equally important, the government will only pick the easy low-hanging fruit (if it picks anything at all).

Unfortunately, during the press conference, I did not hear anyone speak of Intensive Behaviour Intervention or Applied Behaviour Analysis.  No one mentioned IBI or ABA.  I did not hear the words “public health insurance” or “Medicare” either.  Access to treatment under Medicare?  No.  Did not hear it.  Management of treatment programs by provincial Ministries of Health?  Nope. Did they say anything about re-negotiating existing Health Accords to ensure access to treatment pursuant to national standards?  I don’t think I heard that either. Did they talk about the role and responsibilities and the leadership that the provincial and federal Ministers of Health should play in this matter?  Nope.  They did say that the feds should designate “a Minister” to be the lead on the development of the strategy, but they did not say which one.  Minister of Agriculture maybe? Oceans and Fisheries?

They did talk about “supports”.  That includes respite.  I think the omission of the treatment under Medicare issue is a fundamental flaw in this CASDA “blueprint” for a National Autism Strategy.

Getting a strategy requires a strategy, and I don’t think they have a strategy that is going to assist in getting access to treatment under Medicare anytime soon.  We’ll see if any party puts something in their election platform, and we’ll see after the October election if the next government will do anything.  I suspect that if they do something and call it a National Autism Strategy, they won’t take initiatives to cover everything in that was addressed about lifespan needs, but will only pick a few of the easier things (like making references to the already announced National Housing Strategy, etc.)

So tomorrow is Autism Awareness Day and Wednesday is annual rally on the Hill day. More to come.

[Andrew Kavchak]

Hi Folks,

So things are being stirred up a bit in Ottawa.  Yesterday (Sunday) there was a rally on the Hill calling for a National Autism Strategy which got some local media play (too bad there were no politicians looking out their office windows).  However, today Parliament is resuming sitting and according to a news bulletin on the iPolitics site:

“Representatives from the Canadian Autism Spectrum Disorders Alliance join Sen. Jim Munson for the launch of what the advisory describes as a “detailed blueprint” for a national autism strategy that will “call on the federal government to take a leadership role in supporting Autistic  Canadians, as well as their families and caregivers.””

Apparently they will be having a press conference or something at around 11 a.m. Ottawa time (in 30 minutes).  Apparently it will be livestreamed on the CASDA facebook page.  Well, they have a “blueprint” for such a strategy on their website, and I recently sent them an email about it.  I wonder whether they bothered to read it. I copy it below.

Hello CASDA,

I am writing to bring something important for the autism community that was highlighted by this week’s federal budget. Please feel free to forward this message to your colleagues.

I note from your website and “position paper” you indicate that the there is a need for the federal government to develop a “National Autism Spectrum Disorder Strategy”.

(The position paper is here: http://www.casda.ca/wp-content/uploads/2017/10/CASDA-Position_Paper.pdf)

The list of items that you identify which should be addressed in a “comprehensive” strategy is a long one.  However, I am surprised by the lack of references to autism treatment, and specifically, the need to get Applied Behaviour Analysis (ABA) treatment covered by Medicare (Canada’s public health insurance) from coast to coast.  The position paper does not mention “ABA” anywhere. The section on finance refers to tax credits for psychologists, occupational therapists, etc. but does not mention ABA therapists.  But that would be irrelevant if it was covered by Medicare. Similarly, the health section of the position paper is somewhat garbled as it begins by talking about “mental health” issues (which sounds like depression, anxiety, etc.) and then refers to “early diagnosis and intervention”, but it is not clear whether this is to deal with the mental health issues such as depression and anxiety (etc.) or with autism and the application of ABA treatment being the intervention being referred to.  This lack of clarity is frustrating because autism is a neurological disorder, it is certainly a “health” issue, and ABA treatment has been evidence-based for decades (which is why it is offered as autism treatment by the “social services” departments in most provinces.  Yet, the “position paper” does not make your position very clear on this issue. In fact, the position paper marginalizes it or ignores it completely. In the research section of the paper there is no mention of conducting research with the goal of finding a cure for autism, but “better treatment options”. One may ask “better than what?”.

To many parents in the autism community, including me, getting access to ABA treatment for autism covered by Medicare should be at the core of a “National ASD Strategy”.  Of course a comprehensive strategy that addresses other things as well, such as housing, etc. is desirable. But expanding an existing government program has historically been easier than starting a broad-based that includes everything from scratch. One has to start somewhere and that involves the establishment of priorities.  I made a video on the topic of such a national strategy that is available here:

https://www.youtube.com/watch?v=UmG1-95PYIE&t=36s

However, regardless of where one stands with respect to the content of an National ASD Strategy, where does the project stand?  CASDA claims to have been created after the 2007 Senate Committee report.  That’s a long time.  Regrettably, to date, nothing has happened on that front and politicians like Mike Lake have in the past dismissed the idea by suggesting that the matter is a provincial jurisdiction responsibility and have voted against our efforts (e.g., in 2007 when Mike Lake voted against Bill C-304 which contained a provision calling for the development of a national autism strategy – his faulty reasoning was discussed here:

http://featbc.org/downloads/FEATBC_release_02_26_07.pdf).

Yet, the Alzheimer Society of Canada managed to accomplish something spectacular that you should be aware of and try to copy. Please take a look at this:

https://laws-lois.justice.gc.ca/eng/annualstatutes/2017_19/page-1.html

The federal Act is called “An Act Respecting a National Strategy for Alzheimer’s Disease and Other Dementias”.  It was first tabled as Bill C-233 in the House of Commons on February 25, 2016.  It was referred after second reading to the Standing Committee on Health and was passed by the House after third reading on February 3, 2017.  First reading in the Senate took place on February 7, 2017 and it was referred to the Standing Senate Committee on Social Affairs (the same one that issued the Pay Now or Pay Later report in 2007) on March 28, 2017.  The Senate passed the Bill at third reading on June 21, 2017 and it received Royal Assent on June 22, 2017 and became law (S.C. 2017 c.19).

Please see the provisions of the Act.  It is short, to the point, and does not require a legal education to understand it.  In essence. the federal law requires the federal Minister of Health to cooperate with provincial counterparts to develop a national strategy.  The Minister must then report on its effectiveness on a regular basis going forward.

So where does that Act and national strategy stand?  Well, at page 153 of the Budget Plan 2019 which was tabled by the Minister  of Finance on March 19, 2019, we see this gem of a paragraph:

“…in support of the National Strategy for Alzheimer’s Disease and Other Dementias Act, Budget 2019 proposes to provide the Public Health Agency of Canada with $50 million over five years, starting in 2019–20, to support the implementation of Canada’s first National Dementia Strategy, which is expected to be publicly released this spring.”

In other words, the government is allocating millions of dollars to implement a National Dementia Strategy which does not yet even exist!  The strategy in question is only “expected” to be announced sometime in the (near?) future.

As you know, the Liberal Party of Canada (LPC) had a policy convention in 2016 and adopted a resolution calling for Medicare coverage for autism treatment.  This is a fundamental core issue which should be at the heart of a national autism strategy. The resolution is here:

https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/

However, the resolution is not binding on the Government.  Yet, it provided our community, including CASDA, with something to lobby with.  The LPC policy committee apparently created a working group and issued an internal report (not public as far as I know) which it provided to Ken Hardie, MP, who is the liaison person with the Liberal Caucus.  I recently wrote to Mr. Hardie asking him about the status of the matter and he replied to me with this:

“I have made a direct appeal to the Minister of Health as well as to the platform committee to get progress toward the policy resolution.  What I’ve heard this far is that the Health Minister is looking for an initiative to cover a number of issues, rather than a series of disconnected ‘condition-specific’ strategies.  For example, the ALS community is also looking for additional help, and there are others.”

In other words, we can forget about a “National Autism Strategy” Act or policy or any related initiative to specifically address getting Medicare coverage for autism treatment, etc. It would be too “condition-specific”!

Needless to say, the hypocrisy and double standards here are inexplicable. What does the Alzheimer Society of Canada know, and do, that CASDA does not?  How is it that they managed to get for their disorder not only a law that requires national coordinated action, but millions of dollars in a budget for the implementation of a national strategy that does not yet even exist, while the autism community gets….nothing (apart from last year’s allocation of money to create another redundant autism resource website which still does not exist)?

Clearly, there is a successful model out there that is recent, current, alive and being assigned financial resources even in a time of deficit and debt expansion by the federal government.

May I please respectfully suggest that CASDA:

(1) study how the Alzheimer’s Society of Canada achieved their incredible success,

(2) explain to the autism community why CASDA has not been able to achieve anything remotely similar, and

(3) consider whether it would be tin the best interests of the autism community across Canada if the Alzheimer Society leadership with its proven track record were hired to provide consulting services to CASDA with a view to replicating their stunning recent achievements?

Please do not feel any need to respond to my message.  We’ve already had our differences of opinion over the failed CAP project broadcast to the country in various op-eds last year and I’m not looking for any further debate with you as we can better use our energies elsewhere.  I just wanted to bring this situation to your attention.  It is simply stunning that our community can’t get key politicians to even utter the words “national autism strategy” while another organization can get a significant statute and millions allocated in a budget to implement a still non-existent strategy!

Sincerely,

Andrew Kavchak

[Andrew Kavchak]

Hi Folks,

So there was a rally on Parliament Hill this afternoon calling for a “National Autism Strategy”. The Ottawa Citizen already has an article posted about it and…my, my,……there is a reference to the Canada Health Act CHA).  The reference is a little awkward, about recognition of autism as a neurological disorder, and I’m not sure where the person who said that gets the idea that it is a Canadian statute that defines or recognizes illnesses, but the planting of the relevance of the CHA in autism debates is a big step forward. Hopefully it will continue at the next rally on awareness day and they will finally mention the key words: Medicare for Autism Now!

Apparently Senator Munson spoke at the rally today, but Mike Lake did not …. hum, wonder why?  Could it be that he does not believe in a National Autism Strategy and does not want to be associated with the initiative calling for one? … Just wondering.

'Kids are being left behind' — Families rally for national autism strategy

[Andrew Kavchak]

Hi Folks,

The noise levels are starting to pick up around here.

This coming Sunday (yeah, I know, when everything in Ottawa is closed and there will be no politicians or journalists around Parliament Hill), there will be an autism rally on Parliament Hill calling for a “National Autism Strategy”.  Apparently the organizers are hoping that a parade of people will march from the offices of the provincial Minister of Community and Social Services (Lisa MacLeod) which is located in the SW suburb of the city, to downtown and make the link with the need for federal government involvement.  It is absolutely refreshing after all these years to see someone else organize such an event for a change.  I remember how difficult it was for me to get the community involved back in 2004, 2005 and 2006.  I think the largest gathering I ever managed to muster was about 100 people, and most were friends of mine.  At the time the autism community was remarkably passive.

https://www.facebook.com/events/546820902475648/

Shortly after that there will be the international and Canadian “Autism Awareness Day”.  With that comes the annual “Autism on the Hill” autism awareness rally.  The organizers have already posted the list of speakers, which is available at:

http://www.autismonthehill.ca/

Besides the organizer who will introduce and MC the event, it appears that the format and list of speakers is the same as every year.  There will be three “self-advocates”.  In other words, people who are high functioning and able to give speeches in front of crowds.  Based on my past observations, it is unlikely that any of them will discuss the needs of the non-verbal and the value and importance of ABA treatment, especially for the low functioning folks on the spectrum.  In the past some of these “self-advocates” struck me as inadvertently trivializing the challenges of people with classic autism because, as one university “self-advocate” graduate student suggested…the biggest challenge was that you have to “follow your dreams” or something like that.  I’m not sure that her pep talk was understood by anyone who was low-functioning.

Then Senator Munson will speak and say a few words.  Let’s be honest.  He’s our best hope, and he might mention the need for federal involvement in the development of a National Autism Strategy, but he has not tabled any Bill to create such a strategy (notwithstanding the obvious success of the similar Bill that became law for Alzheimer’s and Dementia, etc.).

An NDP MP will speak and will probably say something about support for the community, without saying anything specific, because he never had anything specific to say about autism in the past besides something along the lines of “we support the community”, bla, bla.

And then there will be Mike Lake who will bring his non-verbal son again to stand beside him. Why?  Street cred for some for some in the audience?  What will Mr. Lake say?  If all his speeches since his election in 2006 are any indication, he will talk about his son’s and his family’s experiences and their love for each other, etc.  Any discussion of public policy?  Unlikely.  He never said anything about what are the public policy gaps and what the feds should do to address them.  On March 26 he posted on his Twitter account a picture of himself meeting with Ontario Premier Ford and Minister MacLeod along with these words:

“Very productive meeting w/ <s>@</s><b>fordnation</b> & <s>@</s><b>MacLeodLisa</b> this afternoon. Was happy to share my thoughts – felt very much like I was heard. Thanks to <s>@</s><b>AmyFeePC</b> & <s>@</s><b>JR_Ottawa</b> for facilitating & to Ontario autism community for passionate advocacy. Will continue to help in any way I can.”

Really?  And what were those thoughts that he shared?  Does anyone know? He thanks the Ontario autism community for what? “Passionate advocacy”.  I think it would more accurately be described as “desperate advocacy”. I don’t think he gets it.  Thousands of families are about to experience regression and lost hope.  Families are in crisis and are in serious trouble.  After years on waiting lists thousands of families have just been told that their kids will not be getting the full treatment program that they need but will get a mere fraction of what they need.  Crumbs.  They are in a serious crisis situation.  And he will do what?  “continue to help in any way I can”?  And when he voted against the Bill in 2007 that would have incorporated autism treatment in Medicare and mandated the federal Minister of Health to create a National Autism Strategy, was that opposition of his and contribution to killing the Bill his idea of “helping in any way I can”? How many people in the autism community fall for that kind of misleading stuff?

A few years ago I met the organizer of the Autism on the Hill annual rally and told her how surprised I was that no one mentioned the need for a National Autism Strategy. Well, now they have a reference to it on their website. Yet, what is such a strategy to achieve in her (their) opinion?  On the site it says:

“We continue today to advocate for a National Autism Strategy. Equitable services across Canada throughout the lifespan of people with autism.”

No mention to access to treatment.  No mention of ABA coverage under Medicare.  No mention of following up on the Auton case.  Just “equitable services across Canada”.  Does that mean moving program and service standards up to the highest common factor and leaving it their, or setting some even higher national standards?  Or does it mean reducing program and service standards to the lowest common denominator among all the provinces?

I always believed that a crucial step would be to get more and more people to “buy-in” to the concept, and then at some point we would discuss what would be the components of such a national strategy.  We’re increasingly getting to step one. However, step two is going to require a major effort.  Despite all the protests and demonstrations and desperate advocacy over the weeks, months and years, our community is still not speaking from the same page and is not delivering the same consistent message.  In many ways, our community lacks leadership.

 

[Author]

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