[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,

Well, at this time of the year there are usually a few statements read in Parliament relating to “World Autism Awareness Day” (April 2 every year). This year was no exception.  It is clear that the speeches given in the Senate are more interesting and informative.  Regrettably, the statements in the House of Commons are a little more on the “light” side of things. As usual, Mike Lake, the MP from Edmonton, talks about his son and how great he is. We all get that and we all love our children too. Unfortunately, we are not all legislators. In his capacity as an M.P. with a seat in the House of Commons, it is unfortunate that he never uses this opportunity to talk about the needs of the community and the public policy gaps, what can be done by governments, what should be done, what he’s doing, etc. Instead, it is always reassurance about his son being great, etc.   I kind of get the impression that if his son were not in the picture, Mike Lake would have little, if anything, to say about autism public policy, etc.

Cheers,

Andrew Kavchak, Ottawa

From the House of Commons:

April 3, 2017
<h3 class=”hansardH3″ align=”center”>World Autism Awareness Day</h3>

<b>Ms. Ruby Sahota (Brampton North, Lib.): </b>

    Mr. Speaker, April 2 marked World Autism Awareness Day.

    Autism continues to be a major health crisis in Canada and across the world. Through the raising of awareness, more resources have been dedicated towards research, treatment, and diagnoses.

    However, even with the added awareness and resources toward autism, I have met many families that are struggling to access resources and help for their children with autism.

     Nina Jain, a mother of an autistic child, faced this same challenge and took it upon herself to create an online resource, which can be found at able2learn.com. It has over 30,000 pages of material and over 900 products that provide free inclusive educational material, with a special focus on autism and learning disabilities for anyone.

    I would like to commend her hard work and dedication on this important day.

April 5, 2017
<h3 class=”hansardH3″ align=”center”>World Autism Day</h3>

<b>Hon. Mike Lake (Edmonton—Wetaskiwin, CPC): </b>

Mr. Speaker, April 2 was World Autism Awareness Day and 19 years since my son Jaden was diagnosed, at two. Jaden is not special because he has autism, nor is he special despite having autism. He is just really and truly special.

    When people are with Jaden, he does not require them to be anyone they are not. He simply loves the fact that they are with him. He does not care at all what party people are with, whether someone is the Prime Minister, a backbencher, a staff member, or even a member of the Parliamentary Press Gallery.

     He likes people and trusts them. If they do him wrong, he will probably like and trust them all over again before they have completed their next breath.

    Too often our society views such naïveté as weakness. Having had the privilege of learning from Jaden for 21 years, I would argue that the opposite is true. If we can adapt our thinking to include and embrace more of the raw honesty and vulnerability we see in people like Jaden, we will all be better off for it.

From the Senate:

April 4, 2017
<h2>World Autism Awareness Day</h2>
<b>Hon. Wanda Thomas Bernard:</b> Honourable senators, I rise today to bring awareness to autism spectrum disorder. The term “spectrum” reflects the diverse challenges and strengths possessed by each person with autism. I commend my colleague Senator Munson for his tireless work in advocating for individuals with autism spectrum disorder. I would like to underline the importance of his leadership that led to the adoption of An Act respecting World Autism Awareness Day and the landmark Senate report,<i> Pay Now or Pay Later: Autism Families in Crisis.</i>

Thank you, Senator Munson, for your vital work.

I would also like to highlight the work of the charitable organization QuickStart – Early Intervention for Autism. Suzanne Jacobson, Founder and President of QuickStart, raises awareness and initiates programs to cut wait times, build capacity and promote improvements in early identification and intervention.

Yet despite all the work that has been done, there is still much stigma and silence around autism. Consequently, this often leads to lack of diagnosis of autism spectrum disorder in the early years, which is especially significant for families who live on the margins, families who live in neighbourhoods of deep poverty, racialized and immigrant communities. Early diagnosis and early intensive behavioural therapy or intervention services are crucial in order to assist children with autism in reaching their full potential.

Of particular concern to me is the need to bring knowledge, awareness, analysis and action to African Canadians about autism spectrum disorder. Equally important is the need to create more awareness in the communities of people directly affected by autism spectrum disorder, and their advocates, about the additional burden of race and racism as well as barriers that African-Canadian children and adults with autism spectrum disorder must deal with over the course of their lifetime.

As a grandmother of two amazing boys, one who lives with autism, and his older brother who has an acquired brain injury, I am painfully aware of the multiple barriers that they face now and that they will face in the future. As a family, along with their parents, we use all of our resources to ensure they have the support and programs they need to ensure that they have a bright and promising future.

But private family resources are not enough. In the recent release of their report on the cost of raising children, Campaign 2000 noted that the cost of raising children with disabilities is much higher than average. For families, the financial burden is substantive.

We must be concerned about those children with diagnoses who have long waiting lists for inadequate public services. We ought to be concerned about those families who suffer in silence because they are not aware of the services in their area or they do not even have appropriate services in their communities.

Every child in Canada living with autism deserves to have early intervention and the level of support they need to live full, productive lives. There is an autism services crisis in Canada, and we need a national autism spectrum disorder strategy that addresses critical need for funding and policies.

Honourable colleagues, let’s not be silent but stand together for equal rights for all children and families who are dealing with autism.
<h2>World Autism Awareness Day</h2>
<b>Hon. Leo Housakos:</b> Honourable senators, did you know that in 2016, one in every 68 children is diagnosed with autism spectrum disorder? One in every 68. Compare that to one in every 150 children who received a diagnosis of autism spectrum disorder in 2002. This is astonishing increase in just 14 years. This phenomenon has a profound effect on individuals, families and our nation as a whole.

My wife Demi and I were touched first-hand by this issue the day our dear friends, Mary Gouskos and Nick Katalifos, received the diagnosis of autism for their son Emmanuel.

Through them, we have seen first-hand the challenges and struggles that families dealing with autism are facing and applaud all who have stepped up to meet these challenges.

Early diagnosis and intervention are critical, yet the medical system is unable to keep up while the rates of autism continue to soar. Parents complain of the increasingly high costs of therapies while the public system has failed to provide adequate services. Schools across Canada are bursting at the seams as they try to keep pace with the rising number of students with autism.

And it’s only going to get worse unless the federal government takes immediate steps to address the state of autism policy in Canada.

This simple yet startling reality was put front and centre 10 years ago by our own Standing Senate Committee on Social Affairs, Science and Technology in 2007, in its report <i>Pay Now or Pay Later: Autism Families in Crisis</i>. The report called for a national autism spectrum disorder strategy — even back then — at the heart of which would be a plan to broaden educational and professional training opportunities for Canadians with autism.

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. Indeed, some corporations have also recognized that these individuals often possess talents and skill sets that are very valuable.

Many private organizations are attempting to fill those gaps. Take the example of Montreal’s Giant Steps School and Resources Centre for Autistic Children. The school offers a comprehensive approach, including a variety of therapies and teaching methods.

But sadly, it is the only school in Quebec dedicated exclusively to autism. So, as you can imagine, there are more children on the waiting list than there are those receiving the help they desperately need and deserve.

While Giant Steps School must be commended, without sufficient support from the federal government, they and other organizations like them are facing a daunting task. The fact remains that we are not doing enough to support its efforts and other similar programs throughout our nation.

Every child is born with the same potential to achieve greatness, but each and every one of them has the ability to do it at a different speed and in different ways.

Indeed, when society learns to harness all of our children’s strengths and leaves not a single one behind, only then will society truly maximize our combined potential as human beings.

Whether focusing on research and early intervention, family support services or job training, the time has come to develop a government-led, committed and coherent national policy on autism.

It has been a decade since our report was released, but senators haven’t forgotten the daily struggle of these Canadians — nor will we.

April 5, 2017
<h2>World Autism Day</h2>
<b>Hon. Jim Munson:</b> Honourable senators, we have all these notes and prepared speeches in front of us, but sometimes you have to speak straight from the heart.

The last three days have been an incredibly emotional journey dealing with Autism Awareness Day. We heard wonderful remarks from Senator Housakos and Senator Bernard, adding to the team of senators who are building towards getting a national autism strategy, and we are going to get it.

We have had good things come from the government, in terms of the previous government, on research and science and chairs of autism and being ready, willing and able to deal with employment for young adults with autism.

As I stand here today in front of you, 10 years after our report<i> Pay Now or Pay Later</i>, I’m glad the Scottish delegation is here, because three rows behind you is Molly MacDonald who has autism. She is here because she was on the Hill with Suzanne

Jacobsen. There were 500 people today on the Hill, all parties and everybody together thinking about a person like Molly MacDonald.

I’m also thinking of Wyatt Tuft from a school here, an 11-year- old advocate who got his school to talk about autism on his particular day. A young man came up to him, and he had coloured his hair blue to show empathy and what it means to be participating in this society.

Now let me get a little personal. When I started this journey, 10 or 11 years ago, little did I know that I, too, would find out in my family, when I was at the school and invited by my second cousin, introduced again to my two third cousins, Tristin Mercer and Kirin Mercer. Can you imagine? And little Tristin, seven years old, kept looking at me saying, “Are you my cousin? Are you really my cousin?” I said, “I’m your cousin, and I’m also your advocate and friend.” And I know we have a lot of friends inside the Senate as we push towards a national strategy.

The only thing that I will say here that is on a piece of paper — and I have about 18 pieces of paper here — is because of this week and because of this summit, it’s a movement and we’re working together and we’re going to get there. All Canadians living with autism have the right to inclusion, understanding and acceptance, respect and dignity, full citizenship, equitable opportunities and access, personal autonomy and decision making.

At the end of the day, honourable senators, it is about those who live in the autism community who have the same rights as you and I, and it is about human rights.

Thank you, honourable senators.

[Andrew Kavchak]

Hi Folks,

Well, Sunday, April 2, 2017, was “World Autism Awareness Day”. On that day the “Medicare for Autism Now” folks issued an “open letter” to Prime Minister Trudeau pointing out that his party policy convention a year ago adopted a policy to promote the inclusion of ABA treatment for autism in Medicare through a negotiation with the provinces over funding…..and what has the federal Liberal Party that is the government party done to implement the policy resolution so far?  Nothing.  Nada. Zilch.  Zippo.

Well, for the past couple of years some people behind this relatively recent “Quickstart” autism program have organized a “Autism on the Hill” rally, to mark “Autism Awareness Day”.  I went to it last year, and wrote a review which reflected my disappointment.  I also made a video on YouTube titled “Autism Awareness and Government Action”. I wanted to refer to government “inaction”, but I thought that would be too blunt…..but the message that autism awareness should be considered a means to an end, and not an end in itself, is clear in the video.

So I decided to go to this year’s rally on the hill.  I don’t know if I am going to go to these things anymore….I just find them so annoying.  For those who are interested, it seems that this year’s event was livestreamed on FB. It probably will be next year too.

It was advertised as starting at 12 noon. Well, from 12 noon until 12:15, the Dominion Carilloneur was playing the Peace Tower bells and making the usual racket. So while we are all waiting for the bells to stop making their music, what do the assembled politicians and speakers at the top of the stairs (in front of Centre Block) do? They all stand together for the mandatory and opportunistic “photo op”.

About 150 people showed up in the crowd. I was the only one with a sign. My usual sandwich board sign called for a National Autism Strategy and asked people to sign the petition. Many people came up to me and asked to sign the petition on my clipboard.

There were a number of speakers, and even more people standing at the top of the stairs. I think it was a record turnout of politicians (both M.P.s and Senators).

The MC and host of the event was a lady named Jacobsen who started this “Quickstart” program a few years ago after one or two of her grandchildren were diagnosed.  I spoke with her for a few moments before the show started and told her that I think we need to go beyond awareness and talk about the need for a National Autism Strategy (NAS). She agreed and insisted she would refer to it. Well, she started off by thanking all the people who came out and for people who submitted pictures (175) for inclusion on a banner. Then she said the usual slogans…some of which can be interpreted different ways.  “Awareness is about understanding and acceptance”.  “Awareness is not about changing the person”.  To me, the issues really are about the needs of the kids and adults (e.g.,  access to IBI/ABA treatment pronto after a diagnosis, etc.) and the public policy gaps and the discrimination in Medicare, etc.  When people talk about acceptance and not changing the person, it sounds like they are not very interested in treatment and helping a child with autism to become more functional like an average or normal child.  Then she quickly made a reference to the need for a NAS which would involve coast to coast availability of supports for people with autism. So, she did not address the public policy gaps or what needs to be done to fill them.

The first speaker was then introduced. He was a nine year old boy named Brandon, who “only recently found out he had autism”. Well, if for the first nine years of his life his parents, family, friends, teachers, etc.  did not think there was something sufficiently abnormal about him to warrant seeing a specialist, then let’s face it: this boy was probably high functioning and perhaps had Aspergers Syndrome.  Well, his speaking was flawless. He said he felt different (how can he tell?) and some stimuli make him feel uncomfortable, like some smells (me too!). He said he found it hard to “act normal” (he was doing a good job), and he found it hard to remember things (sounds like some people I used to work with).  His concluding message was that everyone needs to understand autism and focus on what he could do, not what he could’nt.  And we should all value the unique perspectives of all people.

The next speaker was another “self-advocate”. He was an adult who was bilingual (my low functioning son can’t speak one language….can someone who speaks two claim to represent him?).  The young man also apparently worked (or was it volunteered) at a local cable tv station. He read his speech in French. He commented on the lack of resources in the school system for people like him.  He pleaded for more patience and understanding.

The next speaker was a lady named Courtney who was very lively and asked the crowd “how’s everybody doing?”. She sounded like a motivational speaker. She is completing her MA in disability studies at York University and writes articles for various disability publications.  She then confirmed that she was diagnosed with Asperger’s at age four.  Finally!  Some truth in labelling.   So what does someone so high functioning tell the crowd?  There is a need to raise awareness. She then provided a series of “tips”. The first two were for those people on the spectrum: (1) be an expert in the area of your choice (yes, she said that – I think she forgot that not everyone on the spectrum is high functioning), and (2) don’t think you can get away with any kind of behaviour just because you have autism.  For the teachers: (1) teachers need to understand ASD, and (2) students in the classrooms also need to know about ASDs. she concluded with two tips for “policy makers”: (1) there should be mandatory training for employers about what people with ASD can do for them, and (2) different kinds of communication tools shoudl be available to all families with a member with ASD because that would help improve communication.

So…there is an increasing fondness among many autism organizations for “self-advocates”. Unfortunately, they only seem to be able in representing the “high functioning” end of the spectrum, and as a result they mislead the public about what autism involves, and they do not reflect the desperate and urgent challenges (indeed, crisis) affecting every family with a severely affected child.

The next speaker was Senator Jim Munson.  He said that this annual day was very emotional for him. He made a comment about too many kids on waitlists.  He then talked about how he heard a “new self-advocate” on Monday this week speaking at a school assemly. The boy was 11 years old and Senator Munson was impressed.  He went on to state that our community is increasingly speaking with one strong voice and increasingly encouraging the government to share “the journey”. The federal Tories a few years ago developed a plan to assist disabled people with employment, and now he said we needed a NAS led by the feds.  It is about human rights and we’re not going away. He said he would retire in four years (the Senate mandatory retirement age is 75) and that he would keep working for a NAS after that, if necessary, but he hoped it would be done before he retired.

The next speaker was the Minister for  Sports and Disabilities, Carla Qualtrough. She is apparently legally blind.  She said that her task was to make life better for Canadians with disabilities and to ensure inclusion from the start. She claimed to be our biggest champion in the House and Cabinet.  Then she encouraged the audience to “keep the fight going”.  If ever there was a politicians who went through motions without ever saying anything meaningful or concrete, that was it.

The next speaker was a young man name Matthew. I’m not sure who he was or where he came from. But he was introduced as being a person who was committed to a NAS.  He said he started his career dealing with respite. He said there was a need to talk about the things people can do and the things for which they have potential.  He then claimed that “we won’t stop until the job is done!”. I was not sure what job he was talking about.  He may have been a politician.

Then Senator Wanda Bernard spoke. She was loud.  Everyone on Parliament Hill could hear her. She has a grandson with autism. She said we need to get beyond awareness and go to action (!!!!).  She then said that kids with autism need to get all the support they need.  I noticed that no one clapped at these statements which were the most important ones of the event so far. I would have clapped but I was taking notes. She then said that we need a NAS, which would including access to things “we take for granted” (I wish she would have elaborated here on what she was specifically thinking of). Regrettably, neither she, nor any other speaker, ever said the words “Applied Behaviour Analysis” or “ABA” or “Treatment”.  Then, she said that she asked the Parliamentary Poet Laureate to write a poem about autism. Of course, at that moment, the audience burst into applause (I kid you not).

Then MP Seamus O’Regan spoke. His first cousin has a child with autism and he described how it affected the family life. Regrettably, I was distracted by some people who asked me to sign the petition I had, and I missed some of what the speaker said, but if it was like his speech last year, he said nothing about the public policy gaps or what the government should do and what he is doing to help.

Finally, Mike Lake, the MP from Edmonton, took the microphone. As he often does, he brought his teenage autistic son with him. Regrettably, his son is non-verbal, so he did not say anything. A lady leaned over to me and commented that she finds the way he uses his son as a prop somewhat of a turn-off. Lake then said that he is a critic for something and that he had two goals.  One had to do with girls having opportunities. The other was that “every disabled person in the world have the same opportunities as my son”.

What?  His son was a beneficiary of the system that exists(ed) in Alberta. He apparently got ABA at a young age and an assistant in the classroom.  But Lake did not mention that while his family was waiting for the ABA program to start, a professional hockey player on the Edmonton Oilers gave him a cheque for $10,000 to start a program. Lake told this to me and Laurel Gibbons in his office when we went to see him after he was first elected about a decade ago.  (At that same meeting he gave us back a petition we gave him and said he would not table it!) Well, I’m wondering whether Lake’s goal is that every disabled kid should know a professional athlete with money to spare? Again, his speech had no specifics about what is missing across the country and what needs to be done.

Then he talked about the “Canadian Autism Partnership” exercise that was meant to advise governments within their jurisdictions. That’s codeword for: “it’s not federal”.  Then he concluded with his message: the agencies across Canada are increasingly speaking with one voice and the self-advocates are the most important speakers. He is sure that the CAP thing will be funded in future budgets, and that he and his colleagues were all committed to it (although evidently neither the current Finance or Health Ministers are).

Well, that’s it.  As I was leaving a number of people asked to sign my petition. One parent told me that she wanted to cry.  I told her that I do too.

[Andrew Kavchak]

Hi Folks,

We all know that our community faces challenges and that improving the situation involves prioritizing and lobbying the government.  Most of us don’t have a whole lot of time to waste, so it is really important to be efficient with our lobbying time, right?  I always thought that the priority of our community should be obtaining access to treatment (i.e. IBI/ABA) under Medicare. That’s what the Auton case was all about. If children who are diagnosed get the treatment they need without undue waiting (and wasted time), for as long as they need it, then chances are the other related life cycle costs (e.g. supports in the schools and in living accommodations, etc.) will be diminished.  So that’s the primary thing that many of us have been lobbying about.

Well, after the non-response of the federal government to this CAP proposal, the CAP folks have issued a press release, which is available at:

http://www.capproject.ca/index.php/en/news

In it, the CASDA folks, indicate that while they are disappointed that yesterday’s federal budget did not provide the funds that they requested for their CAP project, they will continue “the push to establish a Canadian Autism Partnership”.

Get it?  These CASDA folks, who present themselves as leaders of our community and spokespersons for us, will not be focussing all their energies on lobbying government for access to treatment under Medicare. Instead, they will keep on lobbying for $19 million for a new bureaucracy that will engage in “issue identification”, etc.

Imagine what kind of impact it might have if instead they had issued a press release that said, “OK, we tried to get the government to create a new autism bureaucracy, and so far, it has not worked. We’ve decided to focus our energies on lobbying for a few priority issues, of which one paramount issue is getting access to IBI/ABA treatment under Medicare”?

I know that I would certainly join the bandwagon if they did that.  However, it is really difficult to develop any sense of enthusiasm for their “we want a new bureaucracy first” approach, which will obviously delay addressing the treatment issue.  Ironically, the first person who is quoted in the press release as being disappointed with the lack of government support for more bureaucracy, is Cynthia Carroll, Chair of CASDA.  In a “rebuttal” to my op-ed piece that was published in several papers across Canada in January, she wrote that the autism community would benefit from being “a unified community fighting together as one”.   Indeed, it would be great if we could all “get with the program”, but I don’t see the logic in that CAP program.

Ms. Carroll also wrote in her rebuttal to my article that “…the current system has let down not only his son, but thousands of Canadians on the autism spectrum. We share his disappointment, and we stand in solidarity to support his call for action.”  My call for action has always been for a National Autism Strategy that would see the feds negotiate a funding formula with the provinces to ensure access to treatment under Medicare without undue delays as well as the elimination of the 10 year waiting lists for housing accommodation.  I have not seen the CAP project proponents or the CASDA folks issue any press release calling for that.  Have you?  So much for “solidarity” and “unified community”.

Here is a link to the video where I elaborate on the need for a National Autism Strategy.

 

 

[Andrew Kavchak]

Hi Folks,

Some interesting developments, or non-developments….

1. Yesterday the provincial government of Quebec announced its long-awaited “autism strategy”.  Over the past few months there have been quite a few media stories about people leaving the province because the wait lists for access to treatment were too long, and other parents recently formed a “Quebec Autism Coalition” (similar to the Ontario Autism Coalition which has been running for over a decade), in order to lobby the government, etc. The autism strategy is described here: http://montreal.ctvnews.ca/quebec-to-spend-29m-on-new-autism-strategy-1.3333643  Even though the Premier of Quebec is a doctor, there does not seem to be any sense of urgency or alarm. The strategy is to spend $29 million over six years (up to 2022) on various things (eg. supports).  However, there are now apparently 700 kids on waiting lists for treatment, and the government “hopes” to reduce the waiting list by 45%.  Clearly, access to IBI/ABA is not a number one priority in Quebec.  While Quebec recently signed a Health Agreement with the Feds for funding for Medicare, as well as “mental health” and “home care”, that agreement did not cover autism.
2. Today’s federal budget seems to have billions for housing and child care spaces, but I did not come across one reference to autism.
3. Some people thought that the federal budget would have been the place where the federal government may have announced its decision regarding the “Canadian Autism Partnership” Project proposal (CAP) which was a recommendation by a group to the government to spend $19 million over five years for the creation of a new autism bureaucracy that would engage in “issues identification”, etc.  I previously wrote about this in previous posts.  My previous comments were based on the “executive summary” of the “CAP business plan” that we submitted to the Minister of Health in November, 2016.  Well, it appears that there is no mention of the CAP project in the budget and no corresponding funding at this time.  As I previously indicated, I think this is a good step, as we need issues to be addressed, and not shuffled off to some new bureaucracy for “issues identification”.  However, the CAP proponents have now posted online the larger “business plan” (without some financial budget plans) on their website at: http://www.capproject.ca/images/pdf/CAPP_Business_Plan_EN.pdf    The part I find interesting is where they elaborate on the issues part. At page 11 they elaborate on five “complex issues”.  These are: (1) early identification of ASD, (2) enhancing employment opportunities, (3) housing options, (4) access to specialized mental health supports (e.g. anxiety, depression), and (5) Education (this section does not mention “treatment”, or “IBI” or “ABA”).  Thus, even though the working group putting this CAP project proposal together spent a lot of time consulting and putting this proposed plan together, they did not consider the lack of IBI/ABA under Medicare to be a priority issue.  In fact, a search of the 66 pages of the document reveals that the terms “Applied Behaviour Analysis” and “ABA” did not come up….not even once.
4. It appears that Autism Awareness Day is on Sunday, April 2, 2017.  The usual organizers are planning the annual rally on Parliament Hill for Wednesday, April 5 at noon. The usual suspects are expected to show up, including the MP who brings his son with autism, but does not actually say anything about the public policy gaps and what needs to be done. I previously made a video discussing the need to move beyond talking about how much we love our children and to talk about what the governments should do to help them. It is available at: https://www.youtube.com/watch?v=L3Azg3v3TUI   Not surprisingly, the CAP project proposal, which is silent on ABA and the discrimination in Medicare, thanks the MP in question for his involvement and support (“…tireless championing…” of what?  for what?).   I don’t know if I will go this year, but if I do, I will be listening to hear if anyone besides Senator Munson will mention the need for a National Autism Strategy.

[bsharpe]

Hello everyone, here is the latest edition of the Science in Autism Treatment newsletter.  This is a not for profit, volunteer based organization that is committed to providing parents, caregivers and clinicians with science based facts behind Autism treatment.  This newsletter is free so sign up today!

http://www.asatonline.org/siat-winter-2017-issue/

Dr. Sabrina Freeman, the founder of Families for Early Autism Treatment of BC, is the Consumer Corner Coordinator for this publication. Her interview is on page 3 of this newsletter.  Factual, raw and unfiltered:

Lessons Learned, Lessons Shared:
An Interview with Dr. Sabrina Freeman, Parent, Author, and Advocate

A wealth of information for all.  Thank you Dr. Freeman and to all of the Association for Science in Autism Treatment Directors and staff.

[Andrew Kavchak]

Hi Folks,

Well, we’re finally getting some traction in Quebec.  Today, Le Devoir of Montreal published the article about the need for federal leadership on the autism files.  In the past I met with two separate members of the Bloc Quebecois and was profoundly disappointed.  Both members were curious about my protesting on the Hill, but both made it clear to me that these matters were strictly of provincial jurisdiction.  However, one of them was particularly supportive of the idea of the federal government transferring more funds to the province of Quebec, however, he did not think there should be any strings attached.

Not long ago the media carried stories about a Quebec family moving to Halifax because the wait times for access to therapy in Quebec were too long.  My understanding is that the Quebec government is currently reviewing their autism programs and policies and is expected to issue a new revamped approach in the spring.  Perhaps this this an opportune time to stimulate some debate.

Cheers,

Andrew Kavchak (Ottawa)

http://www.ledevoir.com/societe/sante/489729/autisme-plus-de-bureaucratie-n-est-pas-la-solution

<header>LIBRE OPINION
<h1>Autisme: plus de bureaucratie n’est pas la solution</h1>
</header>

21 janvier 2017  Andrew Kavchak

En tant que père d’un enfant ayant reçu un diagnostic d’autisme il y a plus de dix ans, j’ai suivi les débats sur les politiques fédérales et provinciales en matière d’autisme avec un intérêt majeur, mais une désillusion plus grande encore.

Je croyais que l’un des aspects qui faisaient du Canada un grand pays était son système de santé publique, mais le diagnostic que mon fils a reçu m’a ouvert les yeux sur la discrimination dans le système d’assurance maladie. Il n’y a pas de remède contre l’autisme, mais nous disposons depuis des décennies d’un solide ensemble de données scientifiques vérifiées par des pairs qui prouvent que la thérapie par intervention comportementale intensive (ICI) fondée sur les principes de l’analyse comportementale appliquée (ACA) peut avoir une incidence considérable sur le développement des enfants atteints d’autisme.

Malheureusement, le traitement n’est pas couvert par l’assurance maladie partout au pays. Dans la plupart des provinces, l’ICI/ACA n’est pas offert par le ministère de la Santé aux personnes qui en ont besoin, au moment où elles en ont besoin et pendant toute la période où elles en ont besoin. Lorsqu’ils sont disponibles, les programmes sont généralement offerts par le ministère responsable des services sociaux plutôt que par celui de la Santé, et leur portée est extrêmement limitée. De plus, ils sont minés par des listes d’attente excessivement longues qui s’étalent souvent sur des années.

Ma famille a dépensé plus de 40 000 $ pour obtenir cette thérapie dans le secteur privé au cours de la première année après le diagnostic, en attendant un traitement offert par le gouvernement. Cette situation était intenable pour nous, comme elle l’est pour la majorité des familles canadiennes.

Plus récemment, quand j’ai cherché un placement en foyer de groupe pour notre fils en Ontario, je me suis fait dire qu’il nous fallait attendre qu’il ait dix-huit ans pour obtenir que son nom soit inscrit sur une liste d’attente et que la période d’attente moyenne est d’une dizaine d’années. Des attentes aussi considérables pour obtenir des soins en établissement pour les adultes atteints d’autisme sont la norme partout au pays.

Bureaucratie

On peut se demander à quel point le gouvernement fédéral a fait preuve de leadership national dans ce dossier. Il n’a pas fait grand-chose jusqu’ici. Récemment, il a été invité à adhérer à une nouvelle proposition. En novembre, un groupe d’experts sur l’autisme créé par le précédent gouvernement fédéral a remis son rapport à la ministre fédérale de la Santé, Jane Philpott. Un plan d’affaires proposant un projet de partenariat canadien pour l’autisme (PCA), accompagné d’une demande de soutien totalisant 19 millions de dollars sur cinq ans, a été présenté. La ministre Philpott doit maintenant décider s’il y a lieu ou non d’aller de l’avant avec ce « modèle de partenariat pour l’autisme ».

Malheureusement, le PCA est loin d’offrir aux familles canadiennes aux prises avec l’autisme quelque soulagement. Le PCA offre une vue d’ensemble de la structure proposée (conseil d’administration, directeur national, 11 employés, conseil consultatif), et décrit une mission (résoudre les enjeux relatifs à l’autisme à l’aide d’une approche axée sur le partage du leadership) et un processus (consultations, détermination des enjeux, établissement d’un programme, résolution des problèmes, mobilisation, évaluation, mesure, surveillance) — mais ça s’arrête là. En d’autres termes, le PCA prévoit la création d’une autre bureaucratie.

Ceux et celles qui participent au groupe de travail et leurs sympathisants peuvent se réjouir à la perspective d’une nouvelle bureaucratie, mais au sein de la communauté de l’autisme, nous sommes nombreux à réagir avec consternation.

La dernière chose dont les familles aux prises avec l’autisme ont besoin, c’est bien de plus de bureaucratie. Ce dont nous avons besoin plutôt de la part du gouvernement fédéral, c’est un réel leadership dans le dossier de l’autisme, et ce, dès maintenant.

Inquiétudes

Le PCA soulève de nombreuses inquiétudes et présente des risques. Premièrement, le plan ne mentionne aucune lacune précise dans les politiques actuelles et ne cerne pas les enjeux à régler en priorité, pas plus qu’il ne donne d’exemples concrets des méthodes à utiliser pour résoudre ces enjeux dans le cadre du nouveau modèle ou qu’il ne fournit d’échéancier.

Deuxièmement, nous avons déjà une agence de la santé publique et un ministère fédéral de la Santé. Ces institutions et les institutions de même nature au palier provincial ne sont-elles pas assez efficaces pour mener ces consultations et veiller à la collaboration, à la détermination des enjeux et à la prise de décisions politiques ? La création d’une nouvelle bureaucratie aura vraisemblablement pour effet de rendre encore plus aléatoire la possibilité de mesures concrètes pour combler les lacunes dans les programmes et les politiques partout au Canada.

Troisièmement, le modèle du PCA ne confère pas vraiment au partenariat quelque pouvoir d’apporter des modifications à la politique publique, et il est certain qu’il ne disposera ni des ressources ni du pouvoir législatif requis pour prendre des décisions utiles qui aient des effets concrets sur le terrain.

Plutôt que d’envisager une nouvelle bureaucratie, la ministre Philpott devrait déterminer comment le gouvernement fédéral peut faire preuve de leadership, exercer une influence et mettre de l’argent sur la table pour négocier un accord avec les provinces afin de régler trois enjeux récurrents pour les familles aux prises avec l’autisme : le manque de services de santé couverts (assurance maladie) pour le traitement de l’autisme (ICI/ACA) ; le manque de services d’ICI/ACA dans le système d’éducation ; et le manque de logements adaptés pour les adultes atteints d’autisme.

S’il y a volonté politique, il y a moyen d’agir.

 

[Andrew Kavchak]

Hi Folks,

On a somewhat separate matter, we all often come across newspapers headlines that mention “autism” and inevitably attract our attention.  Every once in a while there is something that comes up that is completely unexpected.

I remember about 11 or 12 years ago there was an article that circulated in the media about a Japanese politician or army general (I can’t remember which), who complained that the Japanese armed forces had a mind of their own. He implied that they did not follow orders, and described the Japanese armed forces as being “autistic”.  I was tempted at the time to send him a telegram suggesting the immediate adoption of ABA in the Japanese command structure to resolve his apparent lack of military discipline conundrum.

On December 22, 2016, there was another headline in the news that makes reference to the army….

From: http://alyaexpress-news.com/98-israeliens-faveur-de-lintegration-autistes-larmee/

“98% des Israéliens en faveur de l’intégration des autistes dans l’armée”

Cheers,

Andrew (Ottawa)

[Andrew Kavchak]

Hi Folks,

Well, it seems that enough people wrote to the Toronto Star about the autism article, and they bunched up a few and published them at:

https://www.thestar.com/opinion/letters_to_the_editors/2017/01/15/action-needed-on-autism.html

I have copied the letters below.  Thank you to all those who wrote in support of the original article’s overall observations. I wish to especially thank Beverley Sharpe, who is a frequent contributor to this discussion board!

Regarding the second letter-writer’s objections to the use of abbreviations (and acronyms), I should explain that newspapers impose word count limits on submissions.  As a result, writers seek all possible ways to say the most, with the least amount of words.  One technique is to spell things out fully the first time they are mentioned, and indicate the abbreviation (e.g., Intensive Behaviour Intervention “IBI”). This is a common practice, and it assumes the reader will either remembers the abbreviation, or will not be offended by the requirement to return to the first mention to “refresh” one’s memory.

Cheers,

Andrew Kavchak (Ottawa)
<h1 class=”article__headline”>Action needed on autism</h1>
Sun., Jan. 15, 2017

Re: Autism families don’t need more bureaucracy, Opinion Jan. 6

Autism families don’t need more bureaucracy, Opinion Jan. 6

I was stunned to read Andrew Kavchak’s piece about the proposed Canadian Autism Partnership (CAP) and the fact that the government is now deciding on whether to create a new autism bureaucracy. As a parent of a child with autism, I agree with him that getting access to IBI/ABA treatment for kids with autism without unconscionable waiting lists and absurd age “cut-offs” is the number one priority.

The governments have to work together and agree on a funding arrangement to make this happen. Please do not create a new “issue identification” bureaucracy and believe that the problem is resolved. We don’t need more bureaucracy, but a concerted effort to get autism treatment covered by medicare from coast to coast.

Beverley Sharpe, Families for Early Autism Treatment of B.C.

Why is it that opinion writers who presumably are experts in their field, assume that all the readers of the Star are also experts? I started to read Andrew Kavchak’s article on autism but by the fourth paragraph was fed up with having to go back to the first paragraph to remind myself what the abbreviations he used stood for.

Mr. Kavchak is obviously very familiar with the abbreviations but most readers of the Star are not. I gave up on his article and went to another on the same page by Jon Dogterom about cleaning up the environment only to find again, more abbreviations.

Why in a newspaper article with lots of word space, do contributors insist on writing as if they are using a 140 character Twitter account? For an article to be enjoyed and understood by someone who’s not familiar with the subject, it must be easily readable or people will as I did, lose interest and go on to something else. Is the inability to use the written word another symptom of our dumbed down and interconnected world?

John Blake, Picton

I agree with Andrew Kavchak that the government needs to do something practical to help the situation. Getting access to IBI/ABA treatment for kids with autism is the number one priority. An agreement on funding is needed. We don’t need more bureaucracy. We need to get autism treatment covered by medicare in Canada.

Edward Morofsky, Ottawa

As retired educators and parents of a 35-year old severely autistic adult son who requires 24/7 daily care, assistance and support with all of his activities of daily living that we personally continue to provide, we fully empathize with the Kavchak’s plight and their travails with the support system related to autism – unfortunately we hold out no hope that anything will change.

For three and a half decades we have also struggled with the chronic lack of proper funding and awareness; the impenetrable, ponderous, and often imperious medical, educational and governmental bureaucracy, the endless well-meaning but often useless suggestions for therapeutic interventions and educational supports, the interminable decades-long wait lists that translate into no service at all, the desperately poor quality of residential options, the impoverishing life-long government financial support for the disabled and the ongoing high stress levels of parents who live daily with the often severe multimodal deficits of autism – constant high-pitched squealing, daily incontinence and a lack of interest in personal hygiene, loud vocalizing and an inability to use language to express needs, obsessive/compulsive oppositional behaviours like constantly opening windows and drawers and the regular, severe behavioural tantrums and tics that are all part of the being autistic. We have experienced the social isolation of parents who struggle silently with this life-long syndrome and its significant demands with limited moral support and the despair they feel about the future prospects for their vulnerable and at-risk children after they are gone. Been there, done that, got the T-shirt.

The problem that Mr. Kavchak accurately lays out is typical – too much talk – too little action. While support responses continue to focus on pre-school age panaceas there is no intensive and comprehensive cradle-to-grave long-term plan with funding for those with autism, many of whom are now well into adulthood and despite a worryingly high occurrence rate of 1 in 68 in Canada and a normal life expectancy for those diagnosed with ASD. This is a chronic, life-long disability that will not get better over time and whose needs are complex, diverse and intense and cannot be provided for adequately with generic care and support such as that provided by well-meaning but poorly funded community agencies. The education system is only equipped to provide general special education support. It is not nearly enough. Once children reach the age of 21 they drop off a cliff in terms of coordinated interventions and into a loosely organized community support network supervised by the Ministry of Community and Social Services. After that – its hurry up and wait.

The families of those with autism have waited long enough already – they have a right to expect better.

Robert Bahlieda, Newmarket

 

[Andrew Kavchak]

Hi Folks,

A couple of interesting developments here regarding this CAP project proposal and the concern about the lack of federal leadership.

First, the article that was first published in the Toronto Star last week has appeared in a few more media outlets…

Halifax:

https://www.localxpress.ca/opinions/opinion-ottawa-fiddles-while-families-facing-autism-get-burned-506063

Rural Alberta (I think)

It’s Time for Feds to Show Real Leadership on Autism

Sask News

http://newssaskatchewan.ca/2017/01/11/its-time-for-the-federal-government-to-show-real-leadership-on-autism/

Second, one of the persons involved in the creation of the CAP project proposal to the government had a rebuttal published in the Halifax paper

https://www.localxpress.ca/opinions/rebuttal-autism-community-needs-united-front-in-advocating-for-reforms-508159

I think that a debate about this proposal is healthy and what a democracy is all about.  The CAP website and executive report suggest that “the people have spoken” and they all support CAP. Well, not quite.  So let’s discuss this project to see whether it is what its proponents say it is, and whether it can be improved. I don’t think they’ve made the case for it very well, and perhaps this discussion can help develop a better understanding of what the proposed CAP can potentially do. Ironically, by offering a critique, the CAP folks have the spotlight and can take advantage of it.  The rebuttal raises a few points which merit discussion and should be addressed.  I think it is worth mentioning of course that “op-ed” pieces in newspapers, and the “rebuttals” are limited in space and my original draft was edited (shortened).  There is much more that could be said, but I would encourage and support others to come out and speak up and share their views, rather that this matter just being limited to the usual “talking heads”.  Thus, I myself don’t plan to issue a rebuttal to the rebuttal, but there is one thing I would like to highlight in the rebuttal because I believe that it proves (one) of my points.

In my original critique I pointed out that the priority issues are known. By starting over from scratch and consulting with the community about “issues”, the number of issues raised will inevitably dilute the focus from what should be the priority issues.  To me, access to IBI/ABA under Medicare and access to appropriate accommodation are the critical priority issues. With a flood of other issues that can be expected to be submitted to the new bureaucracy, there will be confusion about what is more (or less) important.  The problem is that there is a serious risk that all the issues will be treated as issues of equal importance and the primary issues will not be adequately addressed. Governments will naturally tend toward picking the low-hanging fruit and tick off the item on the list and claim progress and success.  In the “rebuttal” that was published, the author  states  that “the issues are not exclusive to autism treatment” and they include “….community safety…” and “…access to…dental care…” etc.  See what I mean?  I rest my case.

 

[Isaac]

In Andrew Kavchak’s recent post about “the last things autism families need is more bureaucracy,” he makes an excellent point:
“Regarding the bureaucracy issue… I wonder why the Department of Health or Public Health Agency of Canada cannot be mandated with the creation of an ASD division…Does the government create such separate “partnership bureaucracies” for other disorders/illnesses/syndromes, etc?”, [https://featbc.org/discussions-board/topic/room-three/#post-22467]
The insight is spot-on.  Autism is a health issue.  Responsibility and oversight for the disorder belongs in the Department of Health or the Public Health Agency of Canada. In the landmark Auton ruling, the court said the same thing, via its central finding of fact.  That determination of the court still stands today (findings of fact are never overturned on appeal, only legal arguments).
Here is what the 2000 Auton decision concludes regarding the nature of autism:

– [54] Currently, … diagnosis of [autism] comes under [Ministry of Health] jurisdiction.
– [88] … I consider [autim] to be primarily a health issue …
– [153]… The inability [to access autism treatment] is primarily an issue of health care, not education or social services.

(http://www.courts.gov.bc.ca/jdb-txt/sc/00/11/s00-1142.htm)
In the collective mind of government, autism treatment has always been – and must therefore forever be – excluded from the health care system.  It’s a very rigid mindset. Andrew Kavchak is exactly correct. Autism is a health care issue and belongs in the various health departments that already exist, not in a new bureaucracy that only provides the optics of doing something for families.
Change the rigid mind set, and all else falls into place.

[Author]

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