[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.

 

---

—-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

 

---

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

[FEAT BC Admin]

Autism in the news –> https://featbc.org | click on ‘The Media’, Video Interviews.

BCTV News: "That was then … this is now"

Jean Lewis, FEAT BC Director, exposes BC Liberals’ broken promises made to children with autism within 90 days of forming the new BC Government. BC Liberals passionately condemned the former NDP Government's appeal of the landmark BC Supreme Court ‘Auton’ judgment — a ruling ordering that Government must fund medically necessary autism treatment — but now the new Attorney General says Liberals will press ahead with the NDP appeal because ‘Auton’ supposedly sets a bad health care precedent that must overturned in a higher court.

[FEAT BC Admin]

Autism treatment in the news this week …

– The Province newspaper story can be read at https://featbc.org/files/media/newspapers/province_12_06_01.pdf

– CKVU’s TV news piece can be viewed at https://www.featbc.org/the_media/

Linda Cucek’s son, James, has been consistently denied medically necessary autism treatment by BC’s Government, over many years. Now, in his late teens, James is suffering the inevitable, harmful consequences of government neglect and failure — the painful, costly, ‘revolving door’ of hospitalization and ineffective drug “therapies”. BC’s Children’s Commission reviewed the government harm being done to James and rightfully ordered that government must provide behavioural autism treatment. The Commission’s order has been ignored, as have all government’s promises to long suffering autistic children in BC. https://www.featbc.org/the_media/

[David Bridges]

Hey! Two points only, in response to the msgs. about anthrax and tax cuts.

First, please let's stop bringing the recent terrorist attacks into the debate about Autism treament. Hyperbole of this kind will only alienate us from mainstream readers, the public; those who we want on our side, right?

Second, regarding the tax cuts. We as a group, are almost certainly not unanimous on the issue of tax cuts and how they affect our kids' chance fo treatment.

I personally am taking a beating on taxes and am hoping that the money that is not now gobbled up by an inefficent and wasteful bureaucracy (and fat, LAZY social workers' salaries and pensions) can actually be used by families with autistic kids for the betterment of their children and themselves.

Having said this, I do agree that the current government HAS reneged on their promise to fund autism treatment, and we have every right to give 'em hell.

Just don't become a tool of the big unions' propaganda campaigns against cutbacks. They ARE needed, just not in this area. Never forget that big unions are and have been a major thorn in the side of the treatment of our kids as well, as any parent of school-age kids can attest to.

Sincerely,

Dave Bridges

[FEAT BC Admin]

The ongoing autism treatment dispute is in the news this week on CBC’s Canada Now program, CKVU news and the Province newspaper.

Please visit https://www.featbc.org/the_media/ and click on video interviews to view the CBC story. Stories from CKVU News and the Province will be uploaded soon.

Isaac
Volunteer Board Admin.

[Deleted User]

Are we winning the war on terrorism in this province?
Apparently not, the newly elected Liberal government continues where the NDP left off terrorizing autistic children and their families. By continuing the decade long war on autistic children by refusing them medically necessary (Lovaas ABA) treatment our provincial government becomes responsible for the destruction of the only opportunity these children have of recovery. The only opportunity they have of attaining their full potential as members of society. As a result hundreds of children will live out their adult lives in institutional care. The loss in terms of what these children could have contributed to society exceeds the millions it will cost to care for each of them as adults. Government autism policy belongs in the hands of our family doctors not in the hands of goverment spin doctors and budget balancers.
Imagine what a bitter lie it is to live to be a minister of a ministry responsible for protecting young children yet finding yourself willfully implementing a mandate to do them such great harm.

United States of America; a handful of people die of Anthrax, the country reels horrified and frightened.

Province of British Columbia; a thousand children are forced to endure permanent neurological damage without treatment and rehabilitation, a government MLA says it is for their own good.

Are our leaders really that morally bankrupt that they can ignore the most basic laws of humanity set forth by our society and continue to discriminate against autistic children by withholding treatment for their disease? And then say it is for their own good? Shame on you Richard Stewart. Shame on you Premier Campbell. Shame on you Colin Hansen. Shame on you Christy Clark. Shame on you Linda Reid. Shame on you Gordon Hogg. Shame, shame on you for the pain you inflict on the citizens of this province each passing day.

[Linda Cucek]

Please make sure you watch Channel 13 at 6:00
tonight on Autism.

James Mom Linda

[Barbara Rodrigues]

Hello Lou:

Thank you for sharing both letters – the heartfelt letter from your wife and the unbelievable response from Richard Stewart, MLA. I of course have other words to say regarding Mr.Stewart's letter and will write him in response to his letter. I will share it with you.

I think many of us can relate to your son's birthday cake experience as our experience is so similiar. I never really forget those very sad, scarey lost years but Rachel's letter reminded me of them.

Then to get the response you got!

Anyway, I would like to share both letters with someone and if you could email me privately so that I could discuss it with you, that would be great.

email – joe_rodrigues@telus.net

Barbara Rodrigues
Jeremy's Mom

ps: CBC – Canada Now will be airing the story for sure tonight (Wednesday) between 6-7 – I was told it most likely will be after 6:30 but there's no for sure time. Sorry.

[Lou Arab]

Here is the response from Richard Stewart, MLA for Coquitlam-Maillardville. I hope my three year old son enjoys his tax cut.

Lou Arab
Ethan's Dad

—————

Dear Ms. Notley,

I want to thank you for sending me a copy of your letter to Ministers Clark and Hogg.

You wrote: "Tax breaks are not more important. Anyone who says they are is immoral. . . . . Are tax cuts worth my son's life? His future? . . . Your "new era" is nothing short of immoral. If you allow it to continue unchecked, so too are both of you."

I understand your anger and concern for the funding of MCFD programs. However, your son needs those tax cuts as much as my children. We need those tax cuts so that our economy will start to grow, so that we'll be able to afford the programs we cannot afford today.

Before the tax cuts, which we promised prior to the election, BC had among the highest taxes in North America. The economy in this province was among the worst on the continent, and the tax cuts were needed to start to turn our economy around. I don't think the tax cuts were big enough, quite frankly, but please don't think that our economy could improve without them, or that we could afford any of our social programs without a strong economy. We must cut taxes today, so that we will have an economy strong enough to support the programs we want to deliver for British Columbians. And today, we can't afford them.

Prior to the tax cut, we asked an independent Fiscal Review Panel to examine the province's fiscal situation. They advised us (and this was without the tax cut!) that the taxpayers of this province were facing a structural deficit of $3.8 billion by 2003-04. That means that, if we didn't change the way government was working, the government would continue to borrow from our children every year in an unsustainable way. The panel said the structural deficit must be immediately addressed in two ways: measures to control spending, and measures to stimulate economic growth.

It's certainly OK to talk about the tax cuts, but they are not in any way the reason why we must bring this government's spending under control. No, we have to reign in spending because BC's government spending is out of control.

I read your letter with a great deal of care, and I want to assure you that none of us ran for office hoping to cut government programs. On the contrary, it would be much easier to not cut anything. However, we can't sustain the current level of government spending, so we must — for everyone's sake — trim it.

Of course, there are programs that are very important to individuals, and some of them will suffer from cuts. I wish it weren't so, but the difficult decisions that haven't been made in BC for the past decade must now be made.

I know that all of us are trying to minimize the effects of the cuts we must make, but we also know that there will be pain.

I thank you once again for writing, and I will continue to work to protect these important programs.

Yours truly,

Richard Stewart, MLA
Coquitlam-Maillardville

[Lou Arab]

Dear FEAT Members,

My wife wrote an excellent letter to Gordon Hogg and Christy Clark, with copies to all the MLAs and the media. I want to share it here. In another posting, I will post the unbelieveable response from one Liberal MLA.

Lou Arab (Ethan's Dad)

—————-

I am the mother of a beautiful blonde three year old boy. I want you to imagine yourself , going through what I have gone through in the last two and a half years.

You wake up every morning and hug your six month old baby. You marvel at his beauty. You make plans for his future. You bask in his smile. You take your baby to a place with one or two other children the same age. You stand back and smile as they crawl around and over eachother, exploring, playing. He looks back at you with a smile, just to check that you're still there. You're so proud. A few months later, it's his first birthday party. Your baby's beauty has increased tenfold. You didn't think it was possible. Two of the other babies there are walking. They laugh and look at eachother. A third one, not quite walking, declares "mama!" and crawls toward her mother. Your baby stares into space, lost in thought. The birthday cake arrives. Your baby desolves into frightened tears. The cake is taken away. You try to interest your baby in the other children. The tears increase. A bad day you think to yourself. You feel your throat tighten. Six months later. Still no words from your child. He's just started to walk. You've been to see your family doctor. "Everyone develops at their own pace" you're told. You demand an appointment with another doctor. An eyebrow is raised. You're told to come back in another six months. A speech therapist tells you that your baby is "a little behind". You go back to your doctor. You demand a referral, and then another. You are desperate. Finally after six months of telling you that "there's nothing to worry about", suddenly the collective opinion changes. You are told that you child is "probably autistic". You're forced to wait another six months to get the "formal" diagnosis. You need that so that you can get help for your child. You grieve. You cry. You don't sleep. Your beautiful child continues on, unsuspecting, in his world. You cry some more…alot more. Then you "get busy". Something must be done. You read everything you can find. You discover that something CAN be done. You hear that the new government promised treatment. The deputy premier, a new mother herself, personally made a public promise during the campaign. You thank God for your timing. You feel bad for those parents that came before you whose children were not able to get the treatment you've been promised. You wait. Two months, four months…the treatment gets put off again, and again. It will be coming soon you're told. Then you are told that "a 30% cut will be made to the budget". Tax breaks were more important. You look over at your beautiful child, just turned 3 years old. He looks up, he smiles. He returns to his odd little routine. He has no treatment.

Tax breaks are not more important. Anyone who says they are is immoral. They deserve to go through what we have gone through.

They probably won't. Only 1 in 160 are autistic. The odds are on your side Christy. Do you deserve to enjoy the benefits of those odds? If it were just you, I would not be so sure. But your child has done nothing wrong. So your baby deserves to be healthy.

Will both of you Ministers be proud of what you have accomplished? Will your cabinet be proud? How many people do you plan to hurt? How much treatment to you plan to deny? How many lives to you plan to ruin? Is there a point where it is all worth it? Are tax cuts worth my son's life? His future?

Your "new era" means that I actually have to ask these questions. Your "new era" is nothing short of immoral. If you allow it to continue unchecked, so too are both of you.

Rachel Notley

[Barbara Rodrigues]

Hello Everyone:

Well, I have finished my day 2 of my picketing. I am starting where I left off at day 100 though, so this is day 102. Just to let all of you know that public support is wonderful! Yesterday I got a honk and another person waved and a elderly lady came up and gave me a hug (she knows of our fight previously). Today likewise, a honk and thumbs up and another motorist waved and the girl at the gas station came out and offered me a hot drink. I think the Liberals (especially here in the Okanagan) have seriously forgotten how supportive the people up here were of Jeremy the last time. Well, they will be reminded. They are screwing our kids but not without public knowledge now.

Onto that, CBC – Canada Now – should be airing Jeremy's story/Broken Promises tomorrow -Wednesday at 6 pm. It will definately be provincial and MAY get national coverage! The Wednesday 6 pm Canada Now date was what I was given by the reporter on Monday so unless I hear otherwise I am assuming that's the right date. I will update you if I hear anything different.

Minister Reid was doing her spin – apparently according to her the Liberals haven't broken any promises to autistic children, I am wondering if the Liberals are using the NDP's old spin doctor's or if they've hired their own…

Well, just wanted to let you know about the story and let everyone know the public is super supportive – so hang in there everyone – someday we will win – our kids will get the treatment they deserve –

In the meantime I am on the picket line. A reminder of the Liberals betrayal to our kids.

Barbara Rodrigues
Mother & Advocate to Jeremy
A little boy who does not yet speak
But whose voice will be heard.

[Author]

Replies