[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]

Hello My Dear Friends,

For your information, the CTV.CA website has two video clips on it relating to the autism petition being tabled in the House of Commons yesterday.

Thank you so much for posting the pictures of yesterday's media scrum.

To all those who are sending in petitions to MPs, please consider also asking them to do the following in addition to tabling the petition:
1) table a Private Member's Bill;
2) ask their party to table a motion for action on autism;
3) refer the increasing autism prevalence rates and the crisis about funding treatment to the standing committee on Health;
4) to champion the cause in the House of Commons and rally other Parliamentarians to the cause to put pressure on Cabinet to do something;
5) to write to the Minister of Health and the Prime Minister to take meaningful action to end the discrimination;
6) and anything else that an MP can do, especially when there is a minority government.

By the way, below is an article in today's Ottawa Sun at page 5 – there is a nice picture of my son Steven and me too.

Cheers!
Andrew (Ottawa)

'NO ONE UNDERSTANDS THE HORROR' DAD FIGHTS FOR AUTISM FUNDING
The Ottawa Sun

Nov 24, 2004

The Ottawa Sun
Edition: Final
Section: News
Page: 5
Source: BY DEREK PUDDICOMBE, OTTAWA SUN

Andrew Kavchak simply wants his three-year-old autistic son Steven to live the most productive life he can.

But until the Canada Health Act is amended, that simple desire a father has for his son won't be possible.

A Supreme Court of Canada decision last week struck down the notion that the Health Act discriminates against autism sufferers because there is no reference to it in the act.

Kavchak argues that the mere fact the legislation doesn't include any reference to the disorder is discriminatory.

Kavchak met in the House of Commons foyer yesterday morning with Scott Reid, Conservative MP for Lanark-Carleton, to hand over a petition asking the federal government to amend the Health Act.

"This decision is a massive step backwards to the Victorian times," Kavchak said about the Supreme Court decision.

"I thought this country was caring and compassionate. I was an incredibly proud Canadian.

"I'm goddamn mad."

He and hundreds of other parents of autistic children are lobbying governments to pick up the tab for the almost $50,000 yearly cost of intensive behavioural intervention therapy.

After the Kavchaks' son was diagnosed, they immediately began a demanding program that requires specialists to come into their home seven hours a day through the week and three hours each day on weekends.

COSTLY TREATMENT

It's only been since the program started that Steven has learned to say "mommy" and "daddy" and a few other words.

But his son's gains have come at a great financial cost to the Kavchaks.

"We are depleting our savings. It's economically ridiculous," said Kavchak.

Taking his fight to the government's front door, the passionate father of two has been protesting on Parliament Hill, taking every lunch hour to draw attention to the long waiting list for services for children with autism and the absence of appropriate funding under the medicare system.

"The difference between a civil society and a barbaric one is how it treats the weak and disabled," he said.

"Our country treats them in such a disgusting manner."

STILL ANGRY

Reid became involved in Kavchak's fight after they met on the steps of Parliament last summer and gave Kavchak the direction he needed to pursue his fight.

"It's a situation where a child's life can be affected by treatment," said Reid.

As of today, Kavchak will no longer walk the Hill.

He is tired and sore, but still angry that no one except him and others in a similar situation care about the future of his son.

"No one understands the horror we are going through," said Kavchak.

derek.puddicombe@ott.sunpub.com

Illustration: photo by Suzanne Bird, OTTAWA SUN

ANDREW KAVCHAK, who must pay out of his own pocket for treatment for his three-year-old autistic son Steven, is petitioning the federal government to include autism in the Canada Health Act.

[Avery Raskin]

Hi again…more photos from Ottawa with Andrew have been
added to the set. Please go here to view…

http://homepage.mac.com/araskin/

Cheers,

Avery

[Alan Campbell]

Here is Geoff Plant's quote from his CKNW interview with Michael Smyth…….
"we want to tell our health experts to spend our money ONLY on the therapies that are PROVEN to be successful"

He also said……"the public has a legitimate issue (to ask) if the government has done enough…he doesn't RUN from that".

This is a GREAT sounding board for all of us, in the fight for our children. We WILL educate the public!

Thank you to Avery & Dennis for hanging in there on the phone lines and having our voices heard. They will be heard again, and again.

Cindy Campbell
(Elizabeth's Mom)

[Dubravka Skrijelj]

Hi all!
While collecting signatures for our petiton, I was surprised to find how many people don’t know what autism is and how effective treatment exists but is denied to our kids. I made a one-page quick educational letter by using most of the information and text from FEAT- web site. I’ve found this very helpful in providing people with facts and getting their signatures.
Please be free to stick or share this letter at any public place you go, to create more awareness:

ATTENTION TO ALL CANADIAN CITIZENS:

EFFECTIVE, SCIENTIFICALLY BACKED TREATMENT FOR AUTISM EXISTS!
Effective, scientifically backed treatment for autism exists (the "Lovaas" Method – a form of Applied Behavior Analysis, also known as ABA/IBI therapy). Lovaas behavioural treatment for autism is medically necessary and prescribed by physicians because it is the only treatment available that significantly improves this neurological disorder. Thirty years of research have documented the "Lovaas Method" of behavioural treatment for Autistic children. The method, pioneered by Dr. Ivar Lovaas (U.C.L.A.), is now widely used throughout the world and is remarkably successful.
Scientific studies document a 47% recovery rate from autism and a near 100% improvement rate for children who receive Lovaas early treatment. The cost of Lovaas-style therapy for autism is not covered by the B.C. Ministry of Health's provincial health care plan (British Columbia, Canada). Educational institutions in B.C. do not train therapists in this treatment method. This is serious discrimination against mentally disabled children.
The prognosis of untreated autistic children is bleak. Autism has an organic biological base. This terrible condition affects 1 in 165 children in B.C. Lovaas behavioural treatment allows the child to overcome the dysfunction, similar to the treatment of individuals who have suffered a brain injury or stroke. With these individuals, the brain is capable of compensating for the injury with appropriate therapy. Skills are learned or relearned in a slow and methodical process.
Catastrophic medical costs are devastating B.C. families who choose to fight autism with the only scientifically proven treatment currently available. They must privately pay for their child’s therapy and also import experts from the U.S., at their own expense, to train a staff of therapists. Many families can not afford to pay for this therapy.
Children with autism are currently excluded from a so-called universal Canadian health care system, during the critical, early years of their life when a real difference can be made towards recovery from autism. The right to Medicare, as one of the defining features of Canadian Nationhood, must extend to medically necessary autism treatment for all children who require it.
It is fundamental that an autistic child’s access to medically necessary autism treatment be solely based on need and not individual ability to pay.
Lovaas behavioural treatment of autism must be covered by the government health insurance plan because it is medically necessary care (63 B.C. psychiatrists have endorsed the Lovaas autism treatment method as medically necessary intervention that should be funded under Medicare;).
When an effective Autism therapy exists, yet treatment is not funded by the Government in a universal, accessible manner, young children become victims of a serious crime of omission — they are condemned to live a life imprisoned by the condition of Autism. The cost in terms of human suffering is not to be measured.
A civilized society cannot allow this type of neglect of special needs children, nor can it allow families who struggle against Autism to fight alone, with devastating family and financial consequences. It takes only a signature of yours to change this terrible injustice to most vulnerable citizens.

For more information please visit http://www.featbc.org or phone FEAT of B. C. at: (604)534-6956

[Avery Raskin]

Our illustrious webmaster is a little busy today so we have some
new files in a new location for you for now. We'll move them to
the main FEAT pages later on:

http://homepage.mac.com/araskin/

From the menu you can click through the photos from Ottawa,
Sabrina on CKNW yesterday and Geoff Plant on CKNW earlier
tonight…minus all the ads and other extraneous audio. From
any of the pages you can access the others in the text links at
the top of the page. From the menu you can click the little arrow
button to go to the page. Enjoy.

You need QuickTime Player for the audio files – if you don't have
it yet, it's a free download at:
http://www.apple.com/quicktime/download/

Cheers,

Avery

[Jenn Ralph]

FYI – I just had to email CKNW re: their lack of allotted time for Geoff Plant to take calls:

I am a quite disappointed in your lack of allotted time for discussion of the Supreme Court ruling on Autism and calls allowed to Geoff Plant.
This is a HUGE issue that affects thousands of children, and this was an opportunity to finally challenge Mr. Plant on the inaccurate fiscal doom-and-gloom forecasts that he used successfully in the Supreme Court, that went unchallenged.
While he was scheduled to be on right after the 8pm news to talk about this topic, you began the first 10 minutes of the program (from 8:08 until 8:18) talking about the grow-op issue, which you even said was going to be a 2 hour show tomorrow night! You kept going on about it, and how you wanted to plug the show tomorrow night, and you took up precious time that could have been used toward educating the public to the truths of the autism case and the children.
Yes, you asked him to stay 10 minutes longer, but much of that was taken up by commercial breaks and one caller who diverted AGAIN to the grow-op issue.

Were you “advised” to limit access to the autism issue?

I would appreciate an honest answer.

Please do as much coverage of this as possible. The children can’t fight nor speak for themselves, and it is up to me, and all of you, to do everything you can to raise this issue and have truthful, honest debate. There are solutions to this issue, and we need media like you to help.

Sincerely,
Jennifer Ralph
604-812-4341

[Jannet Narukami]

My husband was abble to get in to the CKNW …. I think he did a pretty good job in voicing out our concerns…..(He was in the room, I did not know that he was on the phone with CKNW)

As I said….we need to let everybody know what all parents with autistic children have been going through…..

[Justin Himmelright]

Tracking the hits on the online petition, looks like about 100 new signatures today. Online petition link is at
http://www.petitiononline.com/mod_perl/signed.cgi?andap1
Send it to everyone you know.

Justin

[Justin Himmelright]

Yeah, thanks guys. That session had a lot of ammunition in it. Promises only to use scientifically validated treatment, promises to work with parents etc. etc. Anybody willing to do a quick analysis and write up the important points? Would be nice to have that to throw back at them at the next available opportunity. The CKNW sound vault link is at

http://www.cknw.com/audiovault/audiovault.cfm

Post the points on this site.

Justin

[Avery Raskin]

Hi gang…I have posted pictures of Andrew K. in Ottawa…Please
feel free to peruse them at:

http://homepage.mac.com/araskin/PhotoAlbum14.html

[Author]

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