[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

[Barbara Rodrigues]

re: Will they cut our funding

Well said, Stephen and Monika. Erik it's true this government told us when they were in opposition that they would not go forward with the appeal – then guess what.

Monika is right on concerning L.Reid – she takes things personally and will cut funding off to a disabled child because she might get in a yelling match over the telephone with the mother. The contractors have the power with the gang over in Victoria in MCFD – so now without the protection of the court – funds will go back to those incompetents – you can be assured of that.

So I cannot stress again to EVERYONE – get your petitions signed – get them into your MP – get this done please. Do not say 'oh someone else will do it' – Do not say 'oh, they won't cut funding – my kid is only 3' Do not say 'oh, it's okay L.Reid said it was so'. Do not say 'oh, I am too busy/tired/stressed/overworked/etc.' You need to do this for your kids because we can't do it without everyone of us doing it now.

Thanks in advance.

Barbara
Jeremy's Mom

[Jenn Ralph]

Monika makes a good point – we should not waste any more seconds of our lives on these uninformed, ignorant losers who are on pathetic power trips that harm our children, ultimately. It seems to me, and anyone correct me if I'm wrong (I admittedly know very little about politics), that the premier is the only person who has any power to do anything. We should focus most, if not all, of our immediate efforts on him.
Feedback welcome…
Jenn.

[Monika Lange]

Dec 2000 – Hansard transcript
Quote by Linda Reid:
“I certainly hope there is something else funded other than the costs of the appeal, that there will be on the ground dollars for these families in the very near future. The bottom line is that these are enormous challenges and the government walks around it in terms of a pilot project or a reference to it. This is where the rubber hits the road in terms of a stated commitment that has some solid implementation to it. Is it a health issue? Most definitely.”

[Monika Lange]

I met with Minister Reid in a room alone (big mistake) about 2 years ago. We had a huge argument about her statement to me then that "Lovaas is not ABA". She simply kept repeating "It's not the same thing" and "No it's not" and "Nu-huh". She wouldn't let it go until finally I tried to move to the next point – at which time she stood up and said she was out of time and walked out on me. I'm still confounded as to why she felt the two were different. But I did leave the meeting learning one thing: Linda Reid is one of the most hostile b*tches I have EVER met. I wondered afterward if she was proud of beating up a poor single mother who was just there to plead for help for her handicapped child. She had me in tears. Never meet with her without witnesses and a bodyguard.

[Mike & Jean]

Letter to Editor
National Post
Nov 25,2004

AUTISM SUPPORT

In light of your recent coverage of the Supreme Court of Canada's Auton
vs. British Columbia (Attorney General) decision, please note that the
B.C. Ministry of Children and Family Development will continue to
provide a range of services for children and youth who have been
diagnosed with autism, regardless of litigation.

Autism is a spectrum disorder and affects each child differently. As
such, there is no one, universally accepted treatment. Research has
shown that Lovaas therapy has benefited some children, while applied
behavioural analysis helps others.

The Ministry's funding programs offer families choice and flexibility to
assist them in choosing the therapies that best meet their child's
needs.

Our province's budget for autism intervention has increased nearly
tenfold from $3.4 million in 1999/2000 to $30.8 million in 2004/2005.

The B.C. Government is committed to continuing to provide funding and
services to children and youth with autism spectrum disorder. The
supreme court decision does not – and will not – alter that committment.

Linda Reid
Minister of State for Early Childhood Development
Victoria B.C.

"MEMO TO MINISTER REID: LOVAAS IS ABA"

no wonder we are in trouble

[Stephen Paperman]

Erik:

Just so you understand…The SCC ruling gives the government carte blanche to do whatever they want to our children. Before the Auton case began, they provided absolutely ZERO dollars and ZERO cents to pay for proper science-based treatment. When they talk about 3 million per year before Auton, they're talking about 3 million dollars into the pockets of government "buddies" like the bunch who run the bogus EIBI program and assorted other "servicesm," the same ones discredited by Marion Allan in the original ruling. And the SCC did not disagree with anything in Marion's ruling per se, only the part that said the government was obligated to make up for their bad behavior.

So the bottom line is, had the Supreme Court gone the other way, and supported the various learned justices below, then the government would now likely be obligated to fund ALL of a child's medical treatment for autism, just as they fund ALL of a person's cancer treatment or facial reconstruction surgery or burn treatment or anything else. Hell, they even pay for 100% of breast reduction surgery, but only reluctantly did they even begin to pay for 33 percent of proper treatment for autism for children under 6, and barely 10 percent of proper treatment for those over six.

So now they can do whatever they like. They can cancel treatment funding outright. They can divert all funding to the same old service providers at the government trough for decades who are nothing more than babysitting services…or worse. Or, as is more likely, they can dither, and consult, and make soothing noises in public, especially right now while the media spotlight is shining fiercely upon them, and then wait for a more politically correct moment to make sweeping changes. For example, a cynic might say they probably won't do much of anything to cut off children with autism until after the May election. Then after that, we may find all funding being diverted to some batch of subcontracting hacks under some wonderful "community living model", and then you'll have to go begging to them to get funding.

The biggest problem right now is we just don't know what they'll do and when. But past experience teaches us that the government does nothing positive for our children without being dragged into it kicking and screaming. And unfortunately, the Supreme Court of Canada just took away the rope we used to drag them to it.

Best,

S.P.

[Avery Raskin]

Today's episode of Autism On CKNW is now available for
listening…Dr. Ursula Lee and Dr. Glen Davies on with Michael
Campbell earlier this afternoon. The CKNW clips from the last
few days and the pictures of Andrew in Ottawa are also
accessible on the same page…Enjoy!

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

Cheers,

Avery

[Erik Minty]

I'm a little confused, and starting to get a little worried.

My understanding of the SCC decision was that they were simply (or perhaps not so simply!) unwilling to force the government to provide funding.

While this is of course a huge blow to everyone — most especially the excellent people at the centre of it all — nowhere have I heard that the government is removing the current level of funding, or even reducing it in any way. Yet I have seen this statement offered in various forms over the past few days. So I'm starting to wonder if there is more going on that I don't know about.

Is our funding really in jeopardy, or are people simply speculating or expressing the fear that it might be? I had assumed the decision meant there would be no change, at least not immediately.

I'm just trying to understand the facts as there appears to be some amount of confusion. If someone more in the know wouldn't mind clearing this up, I'd really appreciate it!

[Mike & Jean]

Attention –

Dr. Glen Davies and Dr. Ursula Lee are scheduled to appear on the Jennifer Mather show on CKNW 980 today at 1:30pm.

You may want to listen in at the start of the show in case there is a change in the timing of their segment.

[Jenn Ralph]

Debra – Awesome letter. Please also send it to the Ottawa and Toronto papers. BTW – apparently my intiital (more angry letter) made it in today's Ottawa Citizen (friend in Ottawa called to tell us) but I can't find it on the internet anywhere. For those of you out there who are more tech-savvy than me, any advice on how to find it online?
Jenn.

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