[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]

Thanks for posting the radio show, Isaac. Jean – you were eloquent and informative and amazing (as usual). Thanks for making the time to keep the word/story out there for everyone.

I look forward to your victory speech when this is all over.

Barbara
Jeremy's Mom

[Isaac]

The BC Government appeals yet another autism ruling in BC Courts

CKNW Radio’s Bill Good Program interviewed Jean Lewis today regarding another BC Government appeal of an autism treatment judgment, even after five BC judges have already ruled in favour of public funding for children in medically necessary treatment programs. The 'Anderson' ruling says the Auton families are de facto a 'class' … and stop litigating these autism cases ad infintum. The government’s response — yet more litigation to the BC Court of Appeal.

To hear the interview please visit the FEAT BC site and click on ‘Radio Interviews’ … it’s the CKNW story at the top of the list.

Follow this link –> https://featbc.org/the_media/

[Debra Antifaev]

Hi Everyone,
I thought I would add my two cents also, although I usually get blasted by the "Anonymous" when I do. I am reminded of two things after reading the critical posts on this chat:
1. a homeless man with a sign that said "I could have a good job too, if I wasn't so lazy" (and please do not see this as a bash of the homeless…I am simply using his message!)
2. the tendancy of human nature to bite the hand that feeds it
So many people complain that nothing is being done and then do nothing, DOCTOR Freeman is not one of them.
This battle for science based treatment did not start yesterday, it has been going on for years and the Judge refers to the treatment as "Lovaas Autism Treatment" throughout her judgment. The Government providers were thoroughly discredited. I have been able to ask the parents of FEAT about many other autism theories or contraversial treatments and have always been directed to reading materials and web sites with alternative views to make up my own mind.
I am so grateful to Sabrina for her time and commitment to children who are not her own, she had the opportunity to bow out and leave us all swaying in the wind years ago, but her conscience wouldn't let her.
To those of you who would so casually dismiss the work that the families of FEAT have done, please…. stop and think about your own efforts…..could you have done more?
If your answer is yes…..why haven't you?

Thanks Jean, Sabrina, Avery, Robin, Barb, Bev, Maureen…..and all of you who did what others would not

[Mike & Jean]

This post is in response to several queries I have had from parents with respect to legal information being dispensed on the FEAT website.

To clarify:

. The FEAT of B.C. organization has no lawyer on
retainer.

It should be understood that there are many parents of children with autism who are lawyers and have their own very definite and very individual opinions regarding the Auton/Anderson litigation. Several are directly involved with the Auton/Anderson litigation because they sit on the legal steering committee. All of these parents/lawyers have chosen not to disclose their professional or private views, or give legal advice regarding these cases on the FEAT website or any other public chat room for the following very important reason:

This matter is still before the courts. It is scheduled to be heard by the Supreme Court of Canada in March, 2004. In addition, a new development has occurred as of Sept. 18/03, the B.C. Government filed a notice of appeal for the Anderson decision of Aug. 22/03.

We all have a long road ahead of us in the courts. It has already been a long road for all of us involved in the Auton/Anderson cases, but the road will lead to success for all our children. Commentary on the possible consequences to our children by the Supreme Court of Canada and now, the B.C. Court of Appeal is purely speculative. How this will all play out is unknown until the Supreme Court of Canada makes its decision. Further speculation on the possible outcomes of these cases while they are still before the courts are not helpful in my opinion.

If you would like to know who is acting for the Auton/Anderson families and would like further clarification regarding these cases, please contact me directly.

Hopefully common sense, discretion and respect for the Auton/Anderson familes who have already paved a long, hard road on behalf of all of your children will prevail here.

I will not engage in any on-line anonymous or otherwise debate regarding this post. All of our children's futures are at stake.

Thankyou for your attention.

Jean Lewis – Director, FEAT of B.C
jean.lewis@telus.net

[Deleted User]

I am writing this post in reply to a voice mail I received from Sabrina Freeman. (Sorry Sabrina, I did not check my messages until this morning, as I was attending to other matters yesterday.)

Sabrina indicated that FEAT had received several phone calls from parents who were somewhat confused as to what my previously posted letter to my social worker, seeking funding after the Anderson decision, really meant.

The most important element of any court action is the evidence upon which you base your requests to the court. Having the law on your side also helps! It is easier to have the law on your side than it is to change the law. Regardless of the law, you have no case at all if you have no evidence.

If you want to ask a court to order the government to do something, you must first have asked the government yourself and have been refused. Not only do you have to have a written refusal (or repeated non-replies may be sufficient in some cases), you have to be able to convince the court that you took all reasonable and possible steps to secure what you were seeking, prior to coming to court.

That means that one refusal by the lowest employee, on the chain of command is not sufficient. The courts try to stay out of government business as much as possible so you have to give them a very good reason to intervene.

Do not expect that one letter or even three or four letters to government officials will result in a cheque reimbursing you for all your expenses in paying for you ABA/IBI "medically necessary therapy" for your child. While that would be nice, I have yet to see any government make it that easy for parents. While we can always hope that the government will do the right thing, do not count on receiving any money quickly.

What the letters I am writing, and suggesting that you also write, will accomplish, is a long paper trail of requests and the resulting refusals and/or failure to reply. I will be posting all of my letters, each one higher up the chain of command, so that other parents may copy or modify them as they see fit.

Each letter that I write will go one step higher up the chain of command, creating the necessary paper trail, until there is simply no place left in government to send my request. When that point is reached and only when that point is reached, will I have a case to take to court for what is called in legal terms a "Judicial Review".

As per an anonymous post last night, it appears that Anderson has already been appealed to the BC Court of Appeal. I have been busy on other matters in the last two days and have not yet confirmed the filing of any appeal. I had been waiting until Monday to write my second letter, as I was waiting to see if an appeal would be filed before deciding exactly what to say in the next letter.

Sabrina, if you can confirm that you have received notification from your lawyers that Anderson has in fact been appealed that may be of interest to other parents. I will have no opportunity to confirm any filing of an appeal until Monday and would not be able to share that information until after I get back to my computer late Monday evening.

Whether Anderson has been appealed or not, I intend to continue to build my PAPER TRAIL, until I have sufficient evidence to commence a Judicial Review. I can continue to hope that it will not be necessary, but at the same time, I am prepared to go all the way. My daughter deserves nothing less from me.

As I had suggested in one of my first posts on this topic, I would be happy to talk to other parents who are also willing to take this matter all the way to court. It is not my intention to make a profit on the backs of other parents fighting for their children, just as I am fighting for mine, only to cover my costs.

I hope this clarifies the questions that Sabrina has been fielding. Sabrina, if you require anything further from me, just let me know and I will do the best that I can.

Joyce Dassonville GN LLB
Family Law and Health & Disability Law

Address: # 114 – 8532 120th Street
Surrey, British Columbia,
V3W 3N5
Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca
Web Page: http://www.dassonvillelaw.ca

[Deleted User]

I don't really know what Joyce is talking about when she says Monday is the deadline for filing an appeal of the Anderson case — the government filed their appeal of Anderson yesterday. Also, predicting the Court of Appeal will uphold Auton is kind of old news-the Court of Appeal already upheld Auton. We'll see if they will do the same for Anderson et al. And then we'll see if the SCC will finally put an end to all of these endless BC government appeals, once and for all.

[Barbara Rodrigues]

Hi:

The funding the social worker speaks of comes from the MCFD/Interm Authority – it's going to provide individualized funding for adults or to families with children with special needs as of October 31, 2003. It's not autism specific and I don't know how it will relate to funding for our kids. It really doesn't have anything to do with the court ordered treatment.

I have posted the information/lack of it for those interested below.

The Mid – September Transition Update has been posted on the Interim Authority for Community Living BC website.

http://www.interimauthorityclbc.ca/Documents/UpdateSept1603.pdf

There is also a black and white version for those readers with slow connections or who want to print in black and white:

http://www.interimauthorityclbc.ca/Documents/PF_UpdateSept1603.pdf

Barbara

[Deleted User]

I am getting extremely confused with respect to the lastest ruling on Government funding. Joyce, you have been considerably helpful with respect to this issue, however, I am personally not versed enough to know this latest court ruling (with respect to legalities etc) and how to defend it with the social worker. I have talked to her today and directed her to the website you provided. She scanned a few paragraphs and stated that from what she could gather on this is that the judgement is what the Government has been doing all along!! She figures if it hasn't allotted a $$$ amount then it doesn't mean much. I asked the question, then why has this gone to the appeals court in the first place? To fund the entire treatment plan regarless of cost. Is this not correct? No answer. Her suggestion to me today was to direct me to the new "individualized funding" that will be available to SOME families with disabilities in October. I have not yet looked this up and have no idea what this is. Has anyone heard of this as yet? How can we get someone to interpret exactly what this court ruling means? This feels like it could go on forever and famlies will never see relief. She also mentioned that I should direct my letter to the Minister himself for a response. Any info would be great. Thanks.

[David Chan]

Thanx Jean
Dave
Mr. P's Dad

[Mike & Jean]

To all parents (particularly parents with newly diagnosed children.)

As scintillating as the FEAT chat board has been of late, there is other very useful information for parents contained elsewhere in the website such as:

Treatment and research information
Legal issues
School issues
Lobby and advocacy information
Events information

and much more…

FEAT sponsors workshops such as the upcoming Behavioural Therapist Workshop at SFU on September 27th. (see FEAT events to download a registration form.)

Other sources of information are available in our:

FEAT Parent Packages
and
FEAT video, titled, "Autism – now what do I do?"
Both are available free to any parent by request.

The FEAT discussion group meets the third Monday of each month to provide parents with a forum to discuss all topics relevant to home-based LOVAAS behavioural autism treatment programs.

Last but not least call us at 604-534-6956 or
e-mail info@featbc.org. We are always happy to talk to parents.

The opinions expressed on the chat board can be informative or unfounded. They are often provocative and sometimes in my opinion offensive…but that is the nature of an open forum and democracy. This is a place for parents to share opinions and information related to LOVAAS ABA treatment.

The characters who contribute to the chat are frequently entertaining i.e. the anonymous posters who trade barbs, or the grandstander who has found a free place and a captive audience to
address, or my personal favourite…the government service providers masquerading as treatment professionals or worse, parents.

Ah! The rich pageantry of the chat board, never a dull moment!

So – PARENTS – GET INFORMED by:

1. Check out the whole FEAT website (not just
the exciting chat board)

2. Go to the FEAT workshops. We strive to
sponsor great quality and low cost.

3. Come out to FEAT meetings and get connected
with other parents doing home-based LOVAAS
ABA programs.

4. Give us a call or send us an e-mail if you
need info.

Parents helping parents is culture of FEAT. Please remember though, opinions on the chat board are just that – opinions, albeit many are well founded. Content on any internet website is not the same as child or situation specific medical or legal advice. Believing it is the same could be foolish at best, tragic at worst.

In closing, please know that this website was designed for the dissemination and sharing of all the issues pertaining to LOVAAS ABA/DTT therapy only. Any discussion regarding any other therapy/treatment falls outside the mission and mandate of FEAT of B.C. so therefore are not appropriate for this board. Please conduct yourselves accordingly. Contact me directly if
you require further clarification.

Thanks to everyone who contributes to this forum in a positive, respectful manner.

Regards,
Jean Lewis, Director, FEAT of B.C.
jean.lewis@telus.net

[Author]

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