[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,

Further to my most recent post, I heard an interview on the radio yesterday with the CEO of the Children’s Hospital of Eastern Ontario (CHEO) who spoke about the latest developments in the Ontario Autism Program (OAP) and CHEO’s newly-announced fees for ABA treatment for autism. At one point he was asked “What do you say to parents who can’t afford it?” and he began his reply by saying that in his preferred scenario, the treatment would be covered by Medicare! He then went on to say the fees are based on “cost recovery” and they don’t make any profit off it, but then he mentioned that they have to “rent space”.  Hmmm…Over $150,000 a year?  No profit?  Perhaps the expenses are a little excessive.  The treatment does not have to be performed in a “Class AAA” facility.  I would have certainly been happy if my son could access their treatment program in a portable “ATCO” construction trailer or something at a much more reasonable cost. He then suggested that parents should take advantage of the Minister’s announced new round of “consultations”.  When asked about whether something could be done to reduce costs, he replied that these fees were in place for the spring and summer, and he expected the government to make some more decisions and announcements before September about future reforms to the OAP.  In the meantime, he suggested that there was too much uncertainly to consider things like “cost cutting”, etc.  In other words, one government agency is waiting for another government agency to do something before it does something, etc.  Isn’t that inspiring?

Meanwhile, the media reported this year that the CEO’s salary was $330,000.  Normally one would expect that efforts at cost cutting without compromising standards of care would be rewarded with a bonus (and thus “incentivize” the CEO).  Unfortunately, it appears that delaying any initiatives at possible cost-cutting seems to be “the prudent way forward”.

On a separate note, remember how back in February 2018 the federal government announced $10 million over five years to fund the creation of an autism website?  Well, it is over a year later.  Where is the website?  I made some inquiries and got some feedback. It appears that the government funding did not start to materialize until February of this year.  From what I understand, it will still be months before anything is launched in cyberspace.  I wish the contracted parties would issue a public status update on the project.  It has been over a year and the funding was supposed to last for five.

 

 

 

 

[Andrew Kavchak]

Hi Folks,

Something significant happened here in Ottawa that has to do with the provision of autism treatment services.  The situation is somewhat convoluted, but can be untangled with a little effort.

The Ontario Autism Program (OAP) which provides the ABA treatment program in Ontario has been administered since its launch in 2000 by the Ministry of Community and Social Services (not the Ministry of Health).

However, the Ministry of Community and Social Services has historically delivered the program by contracting out the provisions of services to a number of “regional service providers”.  In Eastern Ontario, that happened to be the Children’s Hospital of Eastern Ontario (CHEO).  This is a really important issue to consider and understand.  Many parents who don’t quite understand and “get it”, are often under the impression that the services their child has been getting was from the hospital, i.e., administered by the Ministry of Health, and since they were not paying for it, they often were under the impression it was covered by Medicare (in Ontario it is called “OHIP” – Ontario Health Insurance Plan).

On a related note, many advocates for the Medicare system as it currently stands occasionally told me (and argued) that since ABA treatment was not a typical medical service provided by a doctor in his or her office or by a hospital (i.e., if it is not a pill or surgery, etc.) then it is not a service that should automatically be covered by Medicare.  This argument was seen as a justification for the current discriminatory system.  Well, of course, the fact that the Ministry of Community and Social Services contracted the service delivery out to a hospital demonstrates that the argument is a false one.

As you may recall, in early February the new conservative provincial government in Ontario announced some major changes to the OAP in Ontario.  And lo and behold, the CHEO announced that they will be providing ABA treatment services to parents who pay the hospital directly.  And today they apparently issued their “price list”.  And the CEO of the hospital said something that may strike the public as unusual,….the hospital is more used to people providing their OHIP cards to acquire services, and not credit or debit cards to pay for them.  Of course, all of us in the autism community who have been forced to resort to the private sector because the public one was non-existent or non-responsive (due to waiting lists or whatever…) have been paying with credit cards and are VERY familiar with the experience and frustrated at the hospital’s unwillingness to deliver the service upon the presentation of an OHIP card.

Will this headline get some people thinking and wondering where this system is reasonable?   How many other people with diseases and illnesses that need treatment are served by the hospital upon the presentation only of a credit card?  Evidently, judging by the CEO’s reaction, none.  So why the discrimination against autism?  Will anyone ask this question?  Will anyone answer it?  Will anyone care?

https://ottawacitizen.com/news/local-news/cheo-issues-list-of-fees-for-autism-services-we-are-used-to-people-handing-us-an-ohip-card-not-a-bank-card

In case you’re wondering, the CHEO fee is: “$3,360 for 40 hours of intensive applied behavioural analysis therapy”.  So supposing you want to provide your child with a program that is 40 hours a week for 45 weeks of the year (taking about seven weeks off a year for vacations, etc.).  $3,360 times 45 is…$151,200!!!

 

[Andrew Kavchak]

Hi Folks,

Yesterday (April 17, 2019) the provincial government of Newfoundland and Labrador issued a new “Autism Action Plan”.

The press release summarizing the key elements is here:

https://www.releases.gov.nl.ca/releases/2019/health/0417n01.aspx

The action plan itself is here:

https://www.health.gov.nl.ca/health/publications/pdf/autism_action_plan_2019-22.pdf

While the action plan is obviously worthy of study and analysis to determine its strengths and weaknesses, etc. one of the fascinating things here is the issue of timing.  Not only did the government issue this action plan yesterday, but it also “dropped the writ” and called for a provincial election scheduled for May 16.

https://www.releases.gov.nl.ca/releases/2019/elections/0417n11.aspx

A couple of questions come up because of the timing issue.  It should not be surprising that parents in Newfoundland and Labrador will wonder whether this “action plan” will become an election issue and whether the other parties will make any statements as to whether (if they win) they would implement it “as is” or make any changes?  What if the current governing party is not re-elected – will the action plan be changed resulting in an eruption of parent demonstrations (as was the case recently in Ontario)?

However, one of the other interesting issues this reveals is that a party and government can work on the development of an autism plan right up to the day that the Parliamentary session ends and an election is called.

Hmmm….at a the federal level we know that the Liberal Party of Canada (LPC) held a policy convention in 2016 and adopted a resolution calling on the federal government to work with the provinces to ensure that autism treatment is covered by Medicare.  The LPC eventually created a working group to draft a report which was given to their caucus liaison person, who then attempted to speak to the Minister of Health about it, etc.  So far, as far as I can tell, absolutely nothing has happened regarding the implementation of the resolution.  However, at this stage, is it reasonable for MPs to suggest that they are “pre-election mode” and this makes it impossible for them to pay any more attention to this matter? Obviously not.

We are now in mid-April and we know there will be a federal election in October.  Although politicians will typically now focus on their re-election campaigns and accordingly prioritize their attention to projects, there is nothing that prevents them, if they really wanted, from working on the development of an “autism action plan” which could be announced and publicly released on the last day before Parliament rises for the summer holiday (currently scheduled for June 21) or at any time before the election in October.

Way to go Newfoundland and Labrador for showing us that work on the development of autism programs does not have to stop just because there is an election on the horizon!  I hope the federal parties and every MP who is looking for an excuse to shirk their responsibilities and duties take note.

[Andrew Kavchak]

Hi Folks,

It looks like a petition for autism treatment is getting some media traction!
<h1 class=”story-h gn-speakable-title”>Ottawa father’s petition to add autism therapy to Canada Health Act draws nationwide support</h1>
https://globalnews.ca/news/5169467/ottawa-father-autism-therapies/

[Andrew Kavchak]

Hi Folks,

As we all know, these past two months have been quite noisy in the world of autism agitation and propaganda.  As I scan the regular media and social media sites to see what is happening and who is saying what, I have mixed feelings not only because of what is said, but also what is not said.  One of the areas that readers of this board know is a mystery to me is how Mike Lake’s annual autism statements in the House of Commons every April can be so completely devoid of any mention of public policy, and how his annual homage to his son results in so many posts from people thanking him for making them cry and referring to him as a “tireless advocate for a National Autism Strategy”, etc.

Well, someone recently posted a short and simple message that got my attention and which I hope will not be a “one-off” but the sign that the tables are turning.  Imagine this…the “Autism on the Hill” organization posted on their Facebook page a post about Mike Lake’s most recent statement in the House which he capped off by blowing a kiss to his son in the public gallery.  The message stated that the organizers were “privileged” to be in the gallery to hear and witness the show and they encouraged people to listen and watch the video that they uploaded.

https://www.facebook.com/AutismOnTheHillCanada

There is just one comment after the post.  It is from a lady named Bernadette Haaima who stole my heart!

“Bernadette Haaima id rather hear you support parents who’s worlds are turned upside down with his parties cuts to autism and special ed. then i would listen.”

Well said Bernadette!

[Andrew Kavchak]

Hi Folks,

It seems that the Senate website has a page where Senators can post statements.  Senator Jim Munson just posted something on autism.

https://sencanada.ca/en/sencaplus/opinion/perspectives-april-2-4-2019/
<h4>“Senate Liberals</h4>
Last week, I was privileged to stand in the Senate to recognize World Autism Awareness Day on April 2.

Twelve years ago, the Senate Committee on Social Affairs, Science and Technologyreleased the report Pay Now or Pay Later: Autism Families in Crisis. And yet, more than a decade later, access and services for autism are still uneven across this country.

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 autism spectrum disorder (ASD)? Why can’t we guarantee for most people with ASD a future lived to their true potential? I offer that it’s because our leaders don’t know how to listen, because our leaders don’t look at what others are doing, because our leaders don’t know what robust consultation looks like and because our leaders are uncomfortable working together in a nonpartisan way.

This is an unacceptable approach by our policy-makers. Provinces and territories need clear direction.

They need a blueprint, and they need a collaborative and leadership approach with the federal government. We have to sit down together and think outside the box to create a National Autism Strategy. I will never lose my voice for the families dealing with autism, but I’m tired of standing up each and every day talking about the very real challenges faced by families.

It’s my sincere hope that stakeholders can come together and join the conversation because the time is now.”

It is interesting to read how others who speak up about autism in public describe the problems and the issues.  Of course publicity and beating the drums has its benefits, but I’m surprised at how rarely in these statements are there direct messages about the need for autism treatment to be covered by Medicare.

From my perspective the Senator is the usual diplomat, but in the process I believe he errs in attributing the problem of the lack of government responsiveness to politicians not listening, not looking at what others are doing, not consulting and not working together, etc.  I think it would be much more accurate to simply say the truth: when politicians are in opposition they come to our rallies, but when they are on the government side they don’t care.  It’s that simple.  Politicians listen, look, consult and work for things they care about, especially when they believe that it is in their interests. So far, regrettably, no federal government has cared.  Although thinking “outside the box” is a nice expression that can inspire imagination, creativity, and innovation, I think the problem is that federal politicians have considered autism to be outside the box already for way too long and getting “inside the box” is the challenge.  When will the autism be invited to play in the Medicare sandbox?  Huh?  Sorry, but have we not had enough awareness and conversations with stakeholders? If it is not the time now for the federal government to finally take action, when will it be? What is it waiting for?  More stakeholder conversations?  Medicare for Autism Now.

[Andrew Kavchak]

Hi Folks,

A petition was tabled in the House of Commons yesterday (Wed. April 10, 2019) containing a reference to autism.

“Persons with Disabilities

<b>Mr. Peter Schiefke (Vaudreuil—Soulanges, Lib.): </b>

Mr. Speaker, I have the honour to present, in both official languages, petition E-1925, which was initiated by Wendy Atto Doran, from Île-Perrot.  This petition recognizes that there are tens of thousands of older Canadians currently caring for adult children with severe autism or other physical or mental disabilities. That is why this petition calls upon our government to work with parents and caregivers to provide them with funding opportunities for affordable group homes and residences that can provide appropriate and continued care to aging Canadians coping with severe autism and/or other physical and mental disabilities.”

 

[Andrew Kavchak]

The link to the autism petition to the federal government is here:

https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-2138

[Andrew Kavchak]

Hi Folks,

Two things.

First, congrats to Beverley Sharpe on the spreading of her great op-ed piece that originally appears in the Ottawa Citizen. It has since been published by the Montreal Gazette!

https://montrealgazette.com/opinion/columnists/sharpe-a-national-strategy-for-autism-would-help-families-and-save-taxpayers-money-so-where-is-it/wcm/125c68b1-4550-4947-b66c-916a47485455?utm_medium=Social&utm_source=Facebook#Echobox=1554728034

Second, there appears to be a new electronic petition on the House of Commons website that was recently started by someone in Ottawa.  It is a little all over the map and asking for a lot of things, but one of them certainly stands out:

“Enshrine evidence-based therapies such as applied behaviour analysis, occupational therapy, speech therapy into the Canada Health Act”.

It appears that the petition is open for signatures for one month until May 5.  So far there are over 1,300 signatures.  The “whereas” clauses in the petition indicate that 500,000 Canadians are affected by ASD.  So how many of them, and their families and friends and professionals working in the ASD industry will sign the petition by the deadline?

[Andrew Kavchak]

From: https://ottawacitizen.com/opinion/columnists/sharpe-a-national-strategy-for-autism-would-help-families-and-save-taxpayers-money-so-where-is-it
<h1 class=”entry-title”>Sharpe: A national strategy for autism would help families and save taxpayers money. So where is it?</h1>

BEVERLEY SHARPE 

Updated: April 5, 2019

I am the proud parent of a 23-year-old daughter with autism. When she was diagnosed at two years, nine months, I struggled to find treatment after a social worker came to my home and said that my daughter would end up “in a special home with others like her” because her disability was so severe.

I discovered that a treatment for autism existed that could help my daughter develop and grow, but it was neither provided by our public health care system nor covered by medicare. The treatment is Applied Behaviour Analysis. We had to resort to the private sector. My husband left, saying he did not want to spend his retirement savings on a treatment. So I emptied my bank accounts, sold everything of value at a pawn shop, slept on my living room floor and rented out rooms in my house, and worked excessive overtime to pay for my daughter’s treatment.

I was a litigant in the Supreme Court of Canada’s landmark Auton decision of 2004. This decision stated that Applied Behaviour Analysis (ABA) treatment is considered the gold standard of autism treatment. However, the court did not rule that the withholding of treatment was discriminatory and a violation of the Charter. The court stated that any decision involving expenditures was entirely up to the provincial legislatures.

Mahatma Gandhi is credited with stating that “The true measure of any society can be found in how it treats its most vulnerable members.” In Canada, if you are autistic, your core health care need is not covered by our public health insurance system. Canada is overdue to end this discrimination against some of the most vulnerable of society.

The solution is clear. Canada needs to renegotiate health accords with the provinces, and have the federal and provincial ministers of health negotiate a meaningful National Autism Strategy. It is not a far-fetched idea. Since the Trudeau government was elected, it passed a bill mandating the federal minister of health to develop, in cooperation with provincial counterparts, a National Dementia Strategy. The most recent federal budget even allocated millions to this strategy. Many provinces offer autism treatment programs out of the ministry of Social Services, the same ministry that administers welfare. Central responsibility for the autism file needs to be moved to the ministries of health.

My daughter learned to speak, dress herself, eat properly at the table, and develop and maintain daily living skills such as showering, brushing her teeth, dressing herself, doing laundry, shopping at the grocery store and simple meal preparation. She has a life with dignity in which she does not need someone to help her toilet, feed or dress herself.

Today, I am proud to say that my daughter has achieved paid part-time work. She also has daily volunteer work. She enjoys going to movies, walking her dogs and having tea with the neighbours.

Autism treatment has given my child a life. She is not an expensive, institutionalized adult.

Two years ago, the Liberal Party of Canada adopted a resolution to move ABA Autism Treatment into medicare. The result: Nothing has been done.

Cost analysis submitted to the British Columbia courts and the Supreme Court of Canada were clear that for every dollar spent on autism treatment, $1 million can be saved over the lifetime of the child.

Canada is overdue to move Applied Behaviour Analysis treatment into health ministries and include this life-changing treatment in universal medicare.

Vancouver-based Beverley Sharpe is the parent of an autistic adult daughter.

[Author]

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