[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,

This is interesting….as part of the new government's pledge to be more transparent, the PM's website now contains a list of "mandate letters" for each of the Ministers.

http://pm.gc.ca/eng/ministerial-mandate-letters

It is interesting that the PM has requested the Ministers of National Defence and Veterans Affairs to work on a "suicide prevention strategy" for veterans suffering from PTSD. The Globe and Mail carried a series of articles about the sad number of cases. Accordingly, the new government is reacting with appropriate urgency.

But what about an National Autism Strategy that…might have something concrete in it?

http://pm.gc.ca/eng/minister-health-mandate-letter

While there is a reference to making mental health care "more accessible", I did not see anything about autism. I guess the Globe did not carry enough articles lately and the PMO missed the one in the Toronto Star about 16,000 kids with autism in Ontario on waiting lists, etc.

But don't think for a minute that the PM does not want his Health Minister to be busy. It is a lengthy list of agenda items, including crucial new Liberal government priorities like getting marijuana legalized.

[Sherri Brown]

Hello fellow families,

I'm the Principal Investigator on a Simon Fraser University approved study: "The Hidden Costs of Autism: Employment and Income Effects of Caregiving for Children with Autism Spectrum Disorders" . The study is designed to collect first-of-its-kind data on the hidden costs of autism and communicate results to researchers, policymakers, and the general public.

I hope you'll consider participating in the study. Thank you in advance! Survey is available here: http://websurvey.sfu.ca/survey/218266917

Dr. Sherri Brown

[David Bridges]

The Autism Society of BC presents:

Transitioning to Adulthood
(part of the North Shore Family Support Group’s Speaker Series)

Wed., November 18, 7-9pm
West Vancouver Public Library (Welsh Hall West)

Presented by: Kathryn de Lisser, M.S., BCBA of ABLE Developmental Clinic

Synopsis:
This presentation will focus on preparing for the transition from youth to adulthood and how to ensure as smooth a transition as possible for young people and their families. We will discuss the need for adult services that best suit the individual, how adult services differ from children’s and how to teach skills now, to improve outcomes for adults. Topics covered will also include transitioning from children’s to adult services, how the focus of home programming may change, different types of services available for adults and fostering independence.

About the presenter:
Kathryn de Lisser is a Board Certified Behavior Analyst who obtained her Master of Science Degree in Applied Behaviour Analysis and Autism from the Sage Colleges, in Troy, New York. Kathryn has worked with individuals with autism and other developmental disorders for over 15 years; beginning as an instructor prior to taking on the role of behaviour consultant. Kathryn works with individuals and their families through childhood and into adulthood, with a focus on working with individuals who demonstrate behavioural challenges. Kathryn has experience designing and implementing programs for many different learners with a broad spectrum of strengths and needs, as well as working with individuals who require support in home, community and residential settings.

RSVP: northshore@autismbc.ca (David Bridges)

[Andrew Kavchak]

Hi Folks,
Well, the new federal Cabinet has been sworn in and there are three ladies at the table who may potentially be allies in our cause. Feel free to correct me if I am wrong…

1) Kirsty Duncan is the new Minister of "Science". She has expressed some interest in autism issues in the past.

2) Jane Philpott is the new Minister of Health. She is a family physician and may have encountered autism from time to time in her practice. Hopefully, she may have some idea of just how dysfunctional and discriminatory the health system is for kids with autism.

3) Carla Qualtrough is the new Minister for "Sports and Persons with Disabilities". What will she interpret her mandate as being with respect to persons with disabilities?

[Andrew Kavchak]

Hi Folks,

And in today's Hamilton paper there is a story of a family paying $60,000 for autism treatment and going to the provincial legislature to ask for help (even though we are already supposed to have a public health insurance system).

http://www.thespec.com/news-story/6079326-hamilton-family-pays-for-60-000-autism-therapy/

I wonder how the security guards would deal with the problem if all 16,000 families in Ontario on waiting lists would all visit the legislature at the same time.

What an interesting thought…A day of action would send some waves through the political sphere…

[Andrew Kavchak]

Hi Folks,

According to an article in the Ottawa Citizen, which is largely based on reports of the Ontario Auditor General, it appears there are "over 16,000 children" in Ontario on waiting lists for autism services.

http://www.ottawacitizen.com/news/national/over+2c000+children+ontario+wait+lists+autism+services+some/11489421/story.html

Over 16,000…

[Andrew Kavchak]

Hello Everyone,

I just spoke on the phone with Mr. Peter Stoffer, who asked me to convey a message to fellow parents in the autism community.

As many of you know, when I started protesting on Parliament Hill about the lack of Medicare coverage for autism treatment, I met many MPs and Senators, and journalists, etc… However, one of the first MPs that I met at that time (back in 2004) was Peter Stoffer. He was interested, he listened, he cared, and he helped our community to raise the issue in Parliament (through speeches, press conferences, tabling of petitions, attending and speaking at rallies, etc.). He has been one of our community's best allies on the Hill. Unfortunately, he was defeated in the recent election and I sent him a message to thank him for his efforts in moving the bar in the right direction. He asked me to thank all of you for all your efforts and for everything that you have taught and showed him over the past decade. He is a strong supporter because he knows our cause is just and the right thing to do. He was most appreciative of our community's support and gratitude for his efforts on our behalf.

Having visited his office on the Hill, I can also tell you that Mr. Stoffer had by far the most fascinating decorations of hats and different things that demonstrated to me one thing very clearly: he is a proud Canadian, and we were lucky to have him as a supporter of our cause.

Sincerely,

Andrew Kavchak (Ottawa)

[Andrew Kavchak]

Meanwhile, in the U.S.A….

http://www.greensboro.com/news/mccrory-signs-autism-insurance-bill-into-law/article_4369b49b-643d-5f38-be24-a886dd7aa6ac.html

Many U.S. states have passed laws that require private health care insurers to cover autism treatment. But in Canada, where health care insurance is public (i.e., a government monopoly), the governments seem to have difficulty legislating themselves to do something for autism…

[Andrew Kavchak]

Hi Folks,

I don't know about you, but I've never been one to consider autism as a "gift". If given a choice, I would rather my son not have autism, and instead be able to speak and lead an independent life like his older brother.

In our community of parents and families with autism, it is a struggle to lobby local, provincial and federal governments for resources and programs. The first step usually involves pointing out that there is a problem.

But it is pretty hard to convince politicians who don't consider autism to be a problem, and even harder to do with those who consider autism to be a gift. And it is even harder to lobby when other organizations who claim to speak on our community's behalf characterize autism as a gift.

Yet, that's what seems to have happened on the other side of the country. The Autism Society of Newfoundland and Labrador just issued a resource book with a title that refers to autism as a "gift".

https://www.autism.nf.net/autism-the-gift-that-needs-to-be-opened-book-launch/

Why? What was the rationale in picking that title? Does this same group plan to approach the provincial government to seek resources for the treatment of their gifts? I wonder if any other charities representing disorders refer to their respective disorder as a gift? It reminds me of that "joy of autism" movement that was on the front page of a Saturday National Post edition about a decade ago. Joy? Gift? Really? I understand that in life one is likely to be more successful with a positive attitude, but how is the adoption of Orwellian thinking, which turns reality upside down, helpful?

[Andrew Kavchak]

Hi Folks,
Well, several interesting developments on the election front lately…
First, doing some research in cyberspace, it seems that the Autism Society of Canada is merging with Autism Foundation Canada. Then I got an email from CASDA this week asking that recipients consider sending a copy of a template letter to politicians which asked for their support in developing a national autism strategy. Frankly, I thought the idea of writing a letter is a good one, but they are a little late, and the template letter content and tone was too soft, mushy and wishy-washy for my taste. Reference to a National Autism Strategy is nice, but what is it to contain? Nothing was said about that.

However, in contrast, kudos are due to the Medicare for Autism Now! clan for their positive influence and lobbying of the Progressive Canadian (PC) Party.

On their website at: http://www.progressivecanadian.ca/
we see the following announcement, with no "wishy washy" language…

PC Party/Brian Marlatt Endorse Non-partisan Medicare for Autism Now!

FRIDAY, 02 OCTOBER 2015 12:08

Progressive Canadian Party Media Release
PC Party/Brian Marlatt Endorse Non-partisan Medicare for Autism Now!

October 2, 2015, South Surrey-White Rock – The Progressive Canadian Party supports and endorses the non-partisan "Medicare for Autism Now!" national campaign calling for policy change to make science-based Autism treatment (ABA/IBI) available to all Canadians diagnosed with Autism, regardless of age or where they live. "Political will, alone, will overcome the marginal constitutional barriers to support for families and children victimized by Autism," said the Progressive Canadian Party’s Brian Marlatt who first endorsed the national Medicare for Autism NOW!Campaign in the 2008 election. "The provincial governments struggle with the financial burden. The federal government must take the initiative; provincial jurisdiction is not a barrier to the power to persuade or the will to amend the Canada Health Act in the interest of families and children; this government’s firewall provincialism comes at a cost to the most vulnerable."

"The Medicare for Autism, NOW! campaign has not received the high profile media attention it did in 2008 when a Rally for Autism took place here, in Surrey, and in Tony Clement’s riding in Bracebridge, Ontario," Marlatt notes, "but the One in 68 campaign in 2015 deserves support and can continue to count me in." "While BC has stepped up with the support of our local MLA Gordon Hogg and charitable donations to build the Pacific Autism Centre, much more needs to be done."

"The Harper Conservatives continue to fail children and families in real need," Marlatt believes. "A first priority must be to amend the Canada Health Act to provide joint federal/provincial coverage for ABA/IBI scientific-based Autism treatment. The Supreme Court of Canada and lower courts identify autism ABA/IBI as "medically necessary" treatment. There is no excuse for failing to act," Marlatt insists.

"Autism is reported to be a health care epidemic effecting 1 in 68 children in Canada, as indicated by extrapolating US CDC figures," Brian Marlatt stated. "What is equally shocking is that Canadians must rely on American statistics unspecific to Canada. This is symptomatic of the Harper government neoconservative war on knowledge, war on science and inconvenient truths – and defunding of Health Care." Autism treatment can cost families as much as $80,000 per year.. "This is the kind of catastrophic, chronic, health care issue the Canada Health Act can best address. Effective, science-based treatment is available but is not being delivered by the provinces and the federal government is not exercising its responsibilities under the Canada Health Act within its constitutional powers."

Politics as usual on health care is insufficient; that health care is an area of provincial jurisdiction is an inadequate excuse. Today, all levels of government are invited to do better.

Progressive Canadians ask all Canadian parliamentarians to join with them in calling for effective scientific-based autism treatment

For More Information, contact: Brian Marlatt, Progressive Canadian candidate
South Surrey-White Rock

Email: brian.marlatt@pcparty.org Phone: (604) 541-9783

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