[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

[Monika Lange]

In response to 'Anonymous' – Regarding phoning the Ministers' offices, I haven't received a response. However, my objective is to send THEM a message, not the other way around. I've had enough of their two cents… in terms of funding, my child is entitled to a lot more, NOW. Yes, a quick phone call today is definitely worth it.

There are 500 FEAT members and if just HALF of you call that would, in itself, send a very clear message. We don't want to keep waiting and waiting for ABA. Please call. Tie up their phone lines.

The numbers again are:
Minister Hogg: (250)387-9699
Minister Reid: (250)356-7662

Thank you.
Monika Lange

[Deleted User]

Has anyone heard, either publically or privately, of the government's response to yesterdays ruling? Someone mentioned they had phoned the Ministers offices. Did they get a response? Is phoning worth it?

[Deleted User]

I am very happy for those families who won yesterdays court ruling. I do have this to say I hope that in the future because of this ruling that MSP will take over funding, even partially and we can have the medical treatment that is neccessary. As been mentioned all along this is a medical disablity whether mild or severe diagnosed by a doctor referring us to medical treatment. This is my opinion and I am not attacking any agency. But I hope that is the long term effect. Placing this where it belongs – in the medical community only.

My two cents.

[Deleted User]

I am very happy for those families who won yesterdays court ruling. I do have this to say I hope that in the future because of this ruling that MSP will take over funding, even partially and we can have the medical treatment that is neccessary. As been mentioned all along this is a medical disablity whether mild or severe diagnosed by a doctor referring us to medical treatment. This is my opinion and I am not attacking any agency. But I hope that is the long term effect. Placing this where it belongs – in the medical community only.

My two cents.

[Monika Lange]

In light of yesterday's court ruling, I phoned Minister Hogg and Minister Reid's offices this morning to say that I want ABA for my child, and I want it NOW. Wouldn't it be great if their offices were inundated with similar calls today? Please take a moment to call them today.

Minister Hogg: (250)387-9699
Minister Reid: (250)356-7662

Also, if you go to the website http://www.gov.bc.ca/mcf/feed/ there is a feedback spot to write an email to either Minister.

Thank you.
Monika Lange

[Linda Cucek]

In regards to the auton case:

1. What is meant by $20,000 damage award?

2 What is the deadline for government appeal if
this decision goes to the Supreme Court of
Canada?

3. When will the government have to start funding
the $60,000 for the Lovaas treatment per year?

This is very wonderful that the Auton case was won, now I know we will win for all our children -young/older but we must stay vigalant at all times and never give up. It was a real awesome experience meeting my friends Fran and Kim Peek,
who are based on the true story "Rain man". Kim came here from the states to advocate for James who is 18 years old, and Kim is 51, he has had ABA treatment & Lovaas when younger and similar situation to my son James-only James is a savant in music and Kim with numbers. They are truly special people for the father Fran to stick with Kim for 51 years, truly a special father.

I am very proud of all of us parents that have tried so hard to make this happen! I won't give up until I see every young and older autistic get this Lovaas treatment. At the Autism 2002-Linda Reid, promised to meet with Stan and me, to start setting up a ABA-Lovaas treatment for James, she hasn't got back to me as yet.

James Cucek's mom Linda Cucek

[Deleted User]

Forwarded with permission.

As a Canadian and a former lawyer I think I better expand on the apparently
limited knowledge you have concerning the recent British Columbia Court of
Appeal decision. As a matter of fact, despite the fact the decision was made
on the WEST coast by the highest court of the province (similar to the
highest court of a U.S. state) and I live on the east coast, I have spent the
better part of this evening examining the full text of the decision. A three
member court agreed that the children who were autistic and could not get ABA
through the provincial health care system (them all being below school age at
the time of the initial application — now the youngest is 8!) were
discriminated against under the Charter of Rights and Freedoms, a part of the
Constitution of Canada. In essence they did not receive the same treatment
as other children. The parents sued as representatives of their children
(guardians ad litem) as well as in their right since they were the ones who
have paid for the therapy. Among other things their original Further Amended
Statement of Claim asked for a writ of mandamus (an order from the court that
would force the government to pay for future ABA therapy) as well as an order
of indemnification (for all past and/or future ABA therapy costs). This
whole thing was started way back in 1997 and through many courts they finally
got a decision in their favour (although the judge at the trial level gave
them $20,000 only as 'symbolic' damages as well as the writ of mandamus).
Well, the government, specifically the Attorney General of B.C. appealed and
this most recent appeal was once again in the parents' favour… well, as of
this date the A-G hasn't filed its notice of appeal to the Supreme Court of
Canada but it is my understanding that they have either 30 or 60 days to do
so. Of course the Supreme Court may choose not to hear the case but such a
decision may be months, if not years away. In the mean time it is likely the
A-G will ask for injunctive relief which basicially means that the province
will refuse to pay for any ABA therapy until after the Supreme Court of
Canada rules… it is also my understanding that they haven't paid a dime yet
and the oldest child petitioner no longer has ABA therapy as his mother can't
pay for it anymore (bankruptcy I believe).

I have spoken to the the petitioners lawyers today and have requested copies
of their files, specifically their pleadings and their research, as my
husband and I are pissed off, fed up, and geared up to sue the ever-lovin'
••• off the province of New Brunswick, where we live. It is something we
have been debating for awhile as we were waiting for the B.C. Court of Appeal
to rule. Now that they have, it is time to stick it to the powers that be on
the other coast! The really good thing in our favour (and the thing that
sticks in our craw) is our provincial government struck an indepartmental
committee two years ago which completed a report one year ago stating ABA
therapy with early intensive intervention was the best way to treat autism
and recommending the institution of such programs but the report has not yet
been released! … So my husband and I got a copy, leaked it to the media and
the Minister of Health actually responded in writing that he has been too
busy to read it yet!!!!!! Yup, I dare say we have them by the short and
curlies now.

If anyone is interested I'll let you know how things go. I haven't practised
law for 6 years now but I believe, in my heart, that all my years of
litigation work were to prepare me for this one case. I was very good in the
courtroom… and this time my heart will be in it too, so watch out!!!!

Charlotte
Robinsonrocca@aol.com
_____________________________________________
Sabrina any comments on what this person is saying, since this has been posted on major lists on the net with government people on them. Some clarification perhaps for those who might read this and think oh great the ruling is not what it seems…and we are years yet from help.

[Deleted User]

This is indeed a truly fabulous day for each and every family affected by autism. The justices in their wisdom have clearly seen through the fallacious arguments continuously pushed by our governments, and they have said enough is enough. No more waiting lists, no more age limits, no more designated diagnosis centres to ration diagnoses and keep violating our children's rights. With this decision, the right to medically necessary treatment is affirmed, as decided by your own medical professionals, and for as long as they decide it is necessary. That is how I read this courageous, monumental judgement. Like it says on the letterhead, this group was formed To See That Justice is Done…Today that goal is a lot closer than ever before.

There aren't enough words to express how much we all owe to the people who fought for this with their sweat and their tears and their wallets. Every child with autism in this country just got an enormous present from these people. So thank you…a million times.

[Deleted User]

Thank you so much to everyone who has fought so very hard for our children. This news has just been incredible. I have been so very worried about the day my daughter Angel turns 7, next March, and loses her IEII funding. I have read through the information on the ruling at the court of appeal website. I had problems understanding some of it and have a question. I was reading all of the info on the age limit etc. and am trying to determine if the Judge meant that access to autism treatment should be available until the child's 14th bday? I am hoping that I am reading this wrong and that it will go on beyond that point in time. I ask this because I also have a 14yr old daughter with ASD who would really benefit from treatment. I would appreciate any information or understanding you can share.

Thanks so much everyone,
Cheryl
Mom to Angel and Allie

[Rachelle Garand]

Congratulations Feat. To all the parents who worked hard I say thank you. Yes!!!

[Author]

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