[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

[Dorothy Ray]

Just read an interesting story in Saturday's "Now" Surrey paper, pg. 21 "Growing old behind bars…". It states that U.S. figures estimate that the cost of housing prisoners is $20K for a younger inmate and $60K to $75K per year for geriatric inmates. These costs apparently include prescriptions, doctors, caregivers, medical procedures and equipment.

How amazing to me that aging prisoners guilty of terrible crimes are still getting more government (and taxpayer) funding than our babies, many of whom are living as prisoners inside their own bodies.

Food for thought – not that we needed any more! Dorothy

[Dorothy Ray]

Hi Justin. Sorry I'm so slow to respond – my kids are computer-aholics and I only get time when they're in therapy!! In response to your Saturday post, I'm in Chuck Cadman's riding and am working on the petition. If you want to contact me about it, you can reach me at roganddot@shaw.ca. Hope this helps!!

Just wanted to say that I am breathless and in AWE at the way FEAT families have shaken off their huge disappointment and are already jumping all over this country! You inspire me!

Dorothy Roy

[Justin Himmelright]

ONLINE PETITION BREAKS 3300!

[David Chan]

hi guys,

At least I tried on the radio..

too bad MInister Plante gave us the same speil

Mr. P's Dad

[Super Dad]

I am on the mailing lists of various parent groups, and recently I have felt very disturbed by some of the messages I have received. In particular, people have sent me copies of: a) the Attorney General's Nov 19 press release, and b) Linda Reid's Nov 25 letter to the National Post, both without any critical analysis. In one case the sender actually said "the government has spoken so we're okay at this time."

Many parents are getting the message that the government "will not alter their commitment", as cleverly stated in Linda Reid's letter. Very few will question the deliberately vague wording. Most will automatically translate that statement into: "wow we'll still get our $20,000 so we've been worried for nothing." Due to this kind of complacency, we have only 3000 signatures on the online petition, because even families of autistic children see no need to fight.

Do you know how much Linda Reid's commitment means to me? There are thousands of men who abuse or murder their spouses without "altering their commitment."

Tony (Leo's dad)

[Justin Himmelright]

Does anybody out there know of a good way to get Gov't budgets #'s?

[Andrew Kavchak]

Hi Folks,
I just had to post this story from a newspaper in Ontario that adds a bit of a twist on government priorities.
Andrew (Ottawa)

Befuddled by recent government actions
Sault Star
Nov 26, 2004Page: A8
Section: Editorial & Opinion
Edition: Final
Byline: Walt Putman

Two articles in the Nov. 20 Sault Star indicate something in our government is drastically out of kilter.

First is James Wallace's column, Government will fund sex-change surgery once tribunal says it must, that indicates the government is willing to pay for sex-change operations. This, in spite of delisting of optical care, physiotherapy and chiropractic services, and adding a medical premium for taxpayers.

Then comes the story, Top court rejects funding for autism, in which the Supreme Court of Canada ruled that early and expensive treatment for autistic children is not guaranteed by the Charter of Rights.

The government is willing to pay for voluntary sex changes while it abandons autistic children to whatever care parents can provide?

I am completely befuddled by the government's actions.

I am not affected in either case, except as a taxpayer.

Walt Putman,

Dacey Road

[Super Dad]

I am trying to find a good place to quote the U.S. Surgeon General's 1999 report:

"Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998)."

This is taken from the U.S. Surgeon General's web site:

http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism

This is a government web site! Just imagine, outside of Canada there are governments who don't screw autistic children.

Tony (Leo's Dad)

[Monika Lange]

Re: Municipal Council Meetings
I work for city council in Kitimat. I have many letters of support from the year 2000 for ABA treatment that were written by municipalities either to the Premier or to Kitimat Council. The letters were in response to Kitimat's Mayor writing to all municipalities in BC asking for support on this issue. If anyone intends to approach their council, I could fax you the letter your council wrote. You could open your presentation by thanking them for their letter and asking them for continued support. The letters were written by government to government and as such are a matter of public record. If you want your council's letter, please email your fax number to me at mlangedok@hotmail.com

[Justin Himmelright]

OUR KIDS NEED YOU!

We have a specific task and need your help. Information from the petition hardcopies needs to be transcribed to an electronic database of contacts. If you would be willing to accept emails of .pdf files and transcribe the information to an Excel sheet, please email me.

Thanks,
J

[Author]

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