[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

[Susan Burns]

good on you Barbara…keep going…Todd and Jenny Obando and I met with our mla Ken Stewart today….at least got our foot in the door….there was a lot of political mumbo jumbo but i felt our presence was there[and noticed] and i intend to return again in the near future.

[FEAT BC Admin]

The Penticton Western published a letter to the Editor regarding autism and the Liberal's election platform.

The clipping is available at https://featbc.org/downloads/Penticton_Western_11_20_01.pdf

[Barbara Rodrigues]

Hello everyone:

First off, thanks for sharing your letter Debra. You sign off 'does anyone care what his name is?' brought tears to my eyes.

Next I have some good news!! The attached news article has just been sent out to 30!! newspapers throughout British Columbia.

THE STORY OF A CHILD AND BROKEN PROMISES

By HUBERT BEYER

VICTORIA – Note to Gordon Campbell, Premier of British Columbia: if you per chance come across this column, read it carefully. It’s the story of a mother who is desperate to get treatment for her autistic child. And after you finished reading it, send it along to your cabinet and caucus
colleagues.

Jeremy Rodrigues is seven years old. He lives with his parents in Penticton. Jeremy cannot yet talk. He has autism.

For years, Joe and Barbara Rodrigues have tried to get treatment for their boy. The treatment that could help Jeremy is Lovaas-style Applied Behavior
Analysis. The previous NDP government wouldn’t pay for this treatment because Jeremy is over six years old.

When the Liberals were in opposition, they made quite a bit of political hay about how the NDP failed to look after autistic children. Now that they’re in power, they, too, do nothing.

“Our MLA, Rick Thorpe, brought our son's case up many times in the legislature and even in public. Yet under the Liberal Government, I will be
forced yet again to walk a picket line in order to save my son's life, says Barbara Rodrigues.

Jeremy’s doctors say that Jeremy will regress without continued treatment. That means, of course, that in the long run, it will cost the taxpayers a lot more money to look after the boy.

In a letter two months ago to Chris Haynes, acting deputy minister of Children & Family Development, Barbara pleads for help.

“In fighting to save our son from the devastating effects of autism, we have used all of our own available financial resources. In order to provide our son the treatment his doctor's have said is necessary to give him a chance for the future, we have spent our savings, cashed in our RRSPs, borrowed extensively from my husband's parents.

“During the 18 months the NDP Government cut our son off from all Ministry resources, we used up whatever we could to ensure we kept our son's
Lovaas-type ABA program going,” she says in her letter.

“We sold our camper, we cut off our cable and my husband did not insure his vehicle. We went without anything but the bare necessities. We did this in order to provide our seriously disabled son the medical treatment his doctor's have stated he requires.”

To shame government into doing what was right, they set up a web site, contacted every resource set up to protect disabled children from Government neglect and harm. Barbara Rodrigues walked a protest picket five days a week, handing out pamphlets of their son's story. It all fell on deaf ears.

“When I started my protest walk in the fall of 1998,” I was informed by everyone the NDP government would not let me be out there long, definitely no longer than three weeks, certainly not through the Christmas season.

“Well, three weeks came and went. Winter set in and the winds got colder and the snow fell. Yet the government still refused to provide our young son any resources. “

But public support grew. People honked and stopped, they asked questions and listened. They were outraged with government's stance and supportive of their cause. As the Christmas season approached there came an outpouring of cash resources donated to Jeremy's treatment fund.

“So many groups gave money towards Jeremy's therapy, we were overwhelmed. One company in particular gave a huge donation of $500.00. Each person in the company donated a share of their Christmas bonus to help our little boy.
One young man, who wished to remain anonymous, donated his entire bonus of $150 to Jeremy.

She is not giving up, but realism is sapping her strength. Sometimes she feels she can’t go on.

“And then you cry. You cry because of the broken promises, the injustice, the discrimination against your child. You cry from the years of fighting to not only save your child from a devastating neurological disorder but the
fight to get help from an unyielding, uncaring bureaucratic system,” she says

“And then you take a deep breath and wipe those tears from your eyes. You trudge slowly out to the garage and carefully pull down your poster boards
from the rafters above. You dust off those walking shoes, and you do what must be done. You fight with every resource you have to save your son.”

She signs her correspondence, “Barbara Rodrigues, Mother & Advocate of Jeremy, a little boy who does not yet speak, but whose voice will be heard.”

Are you listening, premier?

-30-

Mr. Beyers can be reached at hubert@coolcom.com if you want to make a comment or maybe 'thank' him for taking the time to help. For this article not only helps makes Jeremy's plight known but all our kids struggles.

[Sabrina Freeman]

A correction to yesterday’s post regarding The Canadian Legal Network for Children with Special Needs: the telephone number is Ph. 604-689-8501

Their brochure is now available for download in Acrobat PDF format.

Click here to download brochure –> https://featbc.org/legalnetwork.pdf

[Sabrina Freeman]

NEW LEGAL ORGANIZATION FOR SPECIAL NEEDS CHILDREN
_________________________________________________________

To all FEAT BC discussion board members:

I have some very important and exciting news! A new national legal organization has just been established across Canada that is very important to the best interests of our children as well as all children with other special needs. This organization is “The Canadian Legal Network for Children with Special Needs”.

The non-profit society is a group of concerned lawyers working together to advance the rights of children with special needs and to enhance the legal remedies available to special needs children. The society accomplishes these goals through promoting quality legal representation and excellence in advocacy, promoting implementation and enforcement of the UN Convention for the Rights of the Child, and encouraging lawyers and lay advocates to increase their involvement and representation on behalf of children with special needs.

In other words, The Canadian Legal Network for Children with Special Needs is an organization that will “level the playing field” and make it much easier for parents to find capable legal representation that is up to the task of challenging the formidable resources of government, whether it be a school district or a provincial ministry of education or health; the Legal Network is designed to further the rights of special needs children at all levels. It’s noteworthy that the Constitution of the Canadian Legal Network for Children with Special Needs does not permit affiliation for lawyers who are employed by, or under contract to, government.

I could go on and on about the tremendous promise this new organization holds out. Instead, you can download the brochure which describes their mandate in more detail.

Click here for brochure –> https://featbc.org/legalnetwork.jpg

Since Canadian provinces have their own jurisdiction over health care and education, each province will eventually have its own affiliate of this new national organization. Initially, The Canadian Legal Network for Children with Special Needs is setting up its B.C. organization because lawyers establishing the organization are based in B.C.; however, there already several lawyers across the country working on special needs cases who shortly will organize their respective provinces. FEAT BC is proud to be the charter member of The Canadian Legal Network and we encourage all members of this discussion group to become members of the network either as individuals, corporate or organizational members. We strongly urge all FEAT’s across the country to step up to the plate and support this vitally important special needs legal organization.

Many of you over the years have asked how you can help the cause. This is a historic; watershed opportunity to contribute to the welfare of every special needs child in B.C. and across Canada. By becoming a member and encouraging everyone who cares about your child to become a member, you will help lay the foundation for an organization that will, at long last, help families hold all levels of government accountable for special needs policies that work against the best interests of our children’s well being.

Address information:
The Canadian Legal Network for Children with Special Needs
114 – 990 Beach Avenue
Vancouver, B.C. V6Z 2N9
Ph. 604-689-8501

[Debra Antifaev]

Dear Ministers Reid and Hogg,

I felt it necessary to clear up a few past inaccuracies in the field of autism. It is my belief that anyone who had actually read the Supreme Court Judgments, read the New York report, and looked at the results of two separate autism studies, could not possibly misquote them so often. I am praying that this misinformation is the result of simply not keeping yourselves informed and not something more sinister, such as catering to the many MCFD service providers lobbying to keep the unacceptable status quo. The Supreme Court found "antipathy toward the litigants" by the folk at MCFD so prevalent throughout the trial.

1. Minister Hogg, Lovaas is NOT and experimental, controversial treatment. The studies are complete and it is the ONLY treatment that is science based and PROVEN effective.

2. Minister Reid, your statement; “this program (EIBI) was accepted by the court as adhering to best practices and meeting the government's obligation to provide medically necessary treatment to all children under six" is completely FALSE! Unless Justice Marion Allen is a time traveler there is no way she could have endorsed a program that was not running at the time she wrote her judgments!

The Supreme Court ruled that ALL autistic children's charter rights were violated, not just those under the age of six, and that the crown be directed to fund early intensive behavioural intervention for ALL children with autism. The ruling said; “it is presumed that the Government will act in good faith in implementing…" Their rights are still being violated and your Government is NOT yet acting in good faith.

3. The judge ruled in Auton # 2 that speech/language pathology, occupational therapy, physical therapy and sensory integration were ineffective in the treatment of autism, so how could she possibly endorse them as "Best Practices" in Auton # 3 ? Common sense should tell you that "Best Practices" would exclude these ineffective therapies and consist only of the treatment that the whole damn lawsuit was about. The judge and the experts (for and against the litigants!!) endorsed Lovaas. Make no mistake, Lovaas is EIBI or IBI and not your government's version of it.

4. The training and the calibre of the staff if the EIBI are also in question. The MCFD and the EIBI are so afraid of anyone finding out how seriously flawed THEIR experimental program is, that they have hired no less than THREE lawyers to impede my access to information. So much for open government. Why is there always an abundance of money available for lawyers to screw with these disabled children but not enough to save them ? I was forced to pull my son from this program because I wasn't even their training was to watch my house and record my daily activities. Tell me how training someone to be a stalker treats autism?

5. The evaluation of the Government's EIBI is being done by the very person who designed the Government's EIBI. The evaluation component was never put out for tender. I believe the whole process is unethical and tainted. There has even been mention that some of the children in the Government EIBI do not appear to be autistic. Were there two independent evaluations of these children? If not, why not?

In closing, Ministers, you were wonderful in opposition but I guess it is much easier to be a critic than to stand by your morals (as Joy McPhail is proving). The autistic children are still being abused by Government, just a new Government. Please remember something my six year old told me, "Breaking a promise is the same as lying, it's still just a lie" …out of the mouths of babes…

Sincerely,
Debra Antifaev
mother of a violated four year old, does anyone care what his name is?

[Jenny Obando]

Hello.
I just want to clarify , regarding meeting with MLA Kent Stewart in Maple Ridge.
All parties wanting to attend this meeting MUST meet with us first, as this meeting has been organized by myself. I encourage any parents wanting to attend to contact me, so that together we can present a strong united front .
For those interested I am planning a meeting at my home tuesday 27 th , november at 2pm. For more info call 466-9047 or e-mail divedoc@telus.net
Thanks again
Jenny ( Tristen's mom)

[Barbara Rodrigues]

Hello:

I wanted to thank Michelle for sharing her letter from Linda Reid. It is quite telling in the fact they are certainly not going to be providing any funding towards kids 6 years and older. It's also such a joke about 'individualized funding' being 'complex'. Even the judge said they could provide the funding almost immediately. I am certainly appalled at the Liberals about face concerning our children.

As to Pam, I think it's not only your MLA but many of our Liberal MLA's who are now too busy to get back to us or meet with us. Yet when Rick Thorpe was in opposition and our MLA, he returned my faxes and email within a day or two.

Now onto my own funding. As you know, Jeremy is the ripe old age of 7. Our funding (against medical advice) was cut down to 10 hours a week of supported child care. That funding will then be cut off completely at the end of December 31, 2001.

I have written countless letters to my new MLA Bill Barisoff, our old MLA Rick Thorpe, the Deputy Minister for MCFD, Chris Haynes, the Minister of C& F D Gordon Hogg, I have sent copies of the letters to all sorts of other Ministers and MLA's including the Premiere. I have been in contact with the Children's Commission and have filed a complaint with the MCFD regional complaints office. I have picketed the Liberal's when they came to Penticton and had an 'open' cabinet meeting and got local CHBC news coverage which went on to air Jeremy's story at the 11:00 news and the following day's 12:00 and 5:00 pm news shows. We got front page coverage of our story in the Penticton Western News Advertiser – a link was sent out to you. AND so far the Liberals are every bit as pompous, arrogant and disrespectful of our son's doctor's medical opinions and our son's medical needs. To say that I am angry and hurt with the Liberals betrayal of autistic children in B.C. is an understatement. To imagine that I am having to fight once again to help save our son is an outrage.

But the Liberals don't seem to care, we gave them the power hoping they would make good on their promises and while they kept their promises to some, they have 'thrown away their promises to our children and our children like yesterday's garbage'.

So I have no choice but to launch my public protest campaign in order to let the people of B.C. and Canada know what the Liberal's have done to not only my son but to many other autistic children.

I will set up my web site again – and I will be picketing 5 days a week every week. I plan on getting National coverage on this story this time and want all of Canada to know of the B.C. Liberals betrayal of our children.

My first day out on the picket line will be Monday
December 3, 2001 – my last day will be when our son's funding as per his doctor's prescription's is returned or when the Auton case is won in the Supreme Court of Canada.

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

[Pam Mihic]

Has anybody had a meeting to discuss ABA with Lynn Stephens (Langley MLA)? I've been trying to meet with her since October 15th. Her office finally scheduled an appointment for November 30th (after 3 weeks of waiting for them to get back to me) and then I received a message today that the meeting has to be postponed. Has anyone else experienced difficulty meeting with her? My email address is pmihic@home.com

[Jenny Obando]

Hello again , for those parents interested in coming to meet with MLA Kent Stewart our meeting will be November 29th, at 2pm at his office.

I would like to meet with all parents attending our meeting with Mr Kent Stewart ,so that we are all clear on our agenda , and so that we may be able to clear any concerns or topics we as parents want to bring up at this meeting.

So for all parents interested in attending the meeting with Maple Ridge MLA Kent Stewart , please contact me at: 466-9047 or divedoc@telus.net

Thanks
Jenny ( Tristen's mom)

[Author]

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