[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

[Debra Antifaev]

I have sent the online petition to everyone on my email list and asked them to either:
1. Sign online and forward to everyone on their email list and/or,

2. Print up a page and take it to their work

I have told them to make sure that no one SIGNS TWICE as this could mess things up.
My brother in law shocked me by taking a petition around the workplace (he is a quiet guy!)
Hooray for Trent!!!
I will drop the ones I have right now at Russ Heibert's office.

(Sorry Nancy, I only have 50…not many friends, I guess!! but I have sent another 30 out by email)

Deb

[Justin Himmelright]

ONLINE PETITION PASSES 3000 SIGNATURES.

We collected over 100 signatures so far today and still climbing…….

[Andrew Kavchak]

Hi Folks,
Press Release just issued by Scott Reid MP.
Andrew (Ottawa)

For Immediate Release
November 26, 2004

REID SPEAKS OUT FOR AUTISTIC KIDS

OTTAWA – Today in the House of Commons, Scott Reid, MP for Lanark-Frontenac-Lennox and Addington, tabled several petitions on the subject of autism spectrum disorder.

This comes at the conclusion of a week of Parliamentary attention to Autism. On Tuesday, Conservative Health Critic Stephen Fletcher, hosted an information session on autism. On the same day Mr. Reid and NDP MP Tony Martin (Sault St. Marie) held a press conference with several parents of autistic children on the Hill. Throughout the week, MPs of all parties presented petitions on the subject of autism and Intensive Behaviour Intervention therapy.

“I am happy to see such strong all-party support for autistic kids and their parents,” said Reid, noting that the House had given its unanimous consent for him to table an online petition with thousands of signatures, which did not meet the technical requirements for introduction in the House through normal channels.

A copy of today’s Hansard follows.

Petitions
Mr. Scott Reid (Lanark—Frontenac—Lennox and Addington, CPC): Mr. Speaker, I am honoured today to present a petition on the subject of autism spectrum disorder.
This terrible and life destroying condition affects 1 Canadian child in 195 and it is because of the grave importance of this issue that hon. members from all parties have been presenting petitions on this subject over the course of the past week.
This petition draws the attention of the House to the length of waiting lists for Intensive Behaviour Intervention therapy. This therapy can be life changing but it only works if it is done early and in some provinces parents must face waiting lists of a year or more. Therefore they must purchase the therapy privately or lose their children to autism.
As a concluding remark, I note that in addition to the petition that I am presenting today which went through the proper channels, I am in possession of an on-line petition containing several thousand additional names. This second petition is not admissible under House rules. However if there is unanimous consent, I would like to introduce this as well.

-30-

For more information or to speak with Mr. Reid, please call (613) 947-2277.

[Andrew Kavchak]

Hi Folks,
Someone asked before about whether there is a deadline for signing and sending in the autism petition to MPs. The answer, as far as I know, is that there is no time line or deadline other than anything we give ourselves. I suggest that we just keep 'em coming until every Canadian has had a chance to sign and every MP has been flooded with these autism petitions. We cannot stop until our kids get what they need and deserve and until Canada becomes the civilized country that it has the potential to be.
Cheers!
Andrew

[Jeff and Robin]

Dear Friends,

I will be giving MP Raymond Chan further petitions with approximately 175 signatures on Monday. Nancy,can you tell me if we still have the Monday November 29th deadline? I am trying to arrange a meeting with Mr. Chan on Monday. Jenn Ralph, if you are interested in coming with me, can you email me privately?

[Mike & Jean]

This is the final result of the on-line poll CKNW conducted:

Do you think government should fully fund treatment for children with autism?
78.01% Yes
21.98% NO
Total Votes: 1242

[Justin Himmelright]

Further to my post on OUR KIDS NEED YOU!

If you can, please include the following in your information to me.
Phone #
email
Town
Province
MP &Party
MLA(MPP) &Party
What you can do
What you are doing

And this time I willl include the email himright@telus.net

Thanks

[Andrew Kavchak]

Hi Folks,
Congratulations to the people who sent it in to Mr. Hiebert! Success! Now the rules are that the government has 45 days to respond.
Andrew

OFFICIAL REPORT (HANSARD)
Thursday, November 25, 2004

Mr. Russ Hiebert (South Surrey—White Rock—Cloverdale, CPC): Mr. Speaker, it is my honour to rise and present a petition on behalf of numerous families in my riding of South Surrey–White Rock–Cloverdale. The petitioners ask Parliament to amend the Canada Health Act to include, as medically necessary, therapy for children suffering from autism. They also ask Parliament to contribute to the creation of academic chairs at Canadian universities dedicated to the research and treatment of autism.

[Justin Himmelright]

OUR KIDS NEED YOU!

General Notice to all Parents and Friends,

Time to organize the army to defend our kids. The petition drive and political activity needs you in the trenches. If you want to do something or are already doing something, contact me at the email address in this email.

Very briefly, tell me what you are interested in helping with. We need:
Intelligence Operatives – internet searches, email distribution list assembly, media watch, petition drive monitors and more
Artillary – letter writers, email launchers, phone callers, and more
Direct Action Infantry – if you are willing to attend rallies and get involved in direct action initiatives, let me know
Fundraising – there have been many excellent ideas floated past me in the last while. The battle is starting and we will need a way to pay for it.
Recruiters – we need more support from the grassroots and there are many organizations that need contacting.

Tell me what you are doing already doing. Maybe I can hook you up with people in your area and you can work together.

For the time being, this is organizational activity only. I will take your contact information and put you on the list. When the time comes, we will need your focused effort.

[Monika Lange]

Andre Picard at the Globe & Mail wrote an article I didn't particularly like. My response was as follows (his article is below my response, as well as his email address in case you want to give him a blast too):

André,

Parents did not want to go to the Supreme Court for autism treatment, it was their only choice. If the government is suffering ill effects politically as a result, they can blame themselves. It is never wise to put someone in the position where they have absolutely nothing to lose – and everything to gain – by going to court. It was our legal right to do so, and Constitutionally speaking, that set of laws specifically exists to prevent government malfeasance. What other recourse does one really have when that happens?

Now, considering the issue that was before the Court, specifically whether it was discrimination to deny autistic children treatment, if you take the statement, “Autistic children are not entitled to medically necessary treatment” – and replace the words “autistic children” with any other definable group in society – for instance: women, the gay community, the blind, seniors, african-americans, catholics – you can bet there would be an uproar. Why? Because it clearly is discrimination against the Charter. So it is too with autistic children."

The bottom line is that money talks. In that respect, every taxpayer in BC should be outraged for at least two reasons: First, $30 million of your tax dollars are being spent every year on autism services that are ineffective crap, while the government refuses to fund the one program that isn’t. Secondly, this amount does not even include the money (again, your tax dollars) spent each year on group homes and round the clock care for autistic adults left untreated. All those children left without treatment grow up and live in institutions at your direct expense. The BC Government has been speaking out of both sides of its mouth – saying we want to help but relentlessly failing to put its money where it’s mouth is. A lot of say, and no do.

I don’t think we’ve lost the battle at all, because press I’ve read states the court battle morphed into a larger power struggle. Although the autism community fell in a pile of court poo, we will come out smelling like a rose in the political end. We are undisputably a powerful force in our own right, because we are fighting for what makes sense and we are fighting for what is right. The truth always percolates to the top.

Monika Lange
Parent of an 11 year old autistic boy

Principle, not emotion, ruled when our top court refused force B.C. to pay for treatment for autistic kids
By ANDRE PICARD

Thursday, November 25, 2004 –

Page A21

The Supreme Court has done a great service to all Canadians by refusing to

force British Columbia to fund a specialized treatment for autistic

children.

The decision is not cold-hearted or mean-spirited; on the contrary, it is

principled and thoughtful. The court has stated, unequivocally, that the

decision to fund or not fund specific health services is a matter for

Parliament and provincial legislatures to determine.

That governments should govern is a fundamental aspect of democracy. That

the Supreme Court of Canada would forcefully restate that principle —

without being distracted by the heart-wrenching plight of autistic

children — is a welcome dose of common sense.

Now, hopefully, the ruling will inspire wishy-washy elected officials and

their prevaricating bureaucrats to actually make some decisions.

Governments need to show the same backbone as the court and get on with

the business of reforming medicare in a systemic, sensible manner.

When the medicare system was created, only physician and hospital services

were deemed medically necessary. The guarantee of these "core" services

was later enshrined in the Canada Health Act. This, of course, has not

stopped individual governments from providing more — home care,

prescription-drug plans, palliative care, diagnostic imaging,

physiotherapy, optometry and even the ABA/IBI treatment for autistic

children (also known as the Lovaas method) that was at the root of the

B.C. court case.

But it is clear that a publicly funded system cannot provide for every

health-care need of every citizen, and the decision to fund programs, or

not, remains at the discretion of government.

The problem is not with the principle itself, which is sound. The problem

is that, over the years, funding has been decided in a piecemeal fashion.

Every review of the medicare system since its inception has underscored

this problem. Governments need to decide what is in the basket of services

— essentially, what is funded by medicare and what is not. More

importantly, they need to create a mechanism for determining what will be

added (and removed) from the basket of services so that medicare remains a

flexible, vibrant social program — one that can react swiftly instead of

dithering.

Right now, the legislative underpinning of our medicare system is caught

in a time warp, a 1950s model of health care being delivered exclusively

by doctors and hospitals.

There is no question that the Canada Health Act must be amended, or

supplemented by additional legislation.

But the response to the autism ruling has been cynical and misguided.

There have been calls to amend the Canada Health Act specifically to

include autism treatment. That approach is ridiculous: Are we going to

amend the law each time a new treatment comes along?

Many people seem to have missed the point and the importance of the

Supreme Court ruling. The court did not rule on the validity of Lovaas

treatment. Canada's top justices are not child-haters, nor are they

discriminating against autistic children.

The reality is that there are many perfectly valid therapies that are not

funded, or only partially funded (and some dubious ones that are) in

various jurisdictions. Is partial funding for the treatment of autistic

children really any different from partial funding of home-care services

for people with Alzheimer's?

The reality is that we have too few ways of measuring the benefits —

absolute, relative and cost-effective — of new technologies and

therapies. There are some superb scientific agencies such as the Canadian

Co-ordination Office for Health Technology Assessment, but they can

examine only a tiny minority of techniques. (And CCOHTA's report on autism

treatment is worth reading: It gives the Lovaas treatment for autistic

children a lukewarm review, saying it appears to benefit preschoolers but

notes that much of the methodology of studies is of dubious quality.)

What is required, beyond objective scientific studies, is a

decision-making body, one that decides what should be included in the

basket of services. A good model for this is the Canadian Expert Drug

Advisory Committee, an independent group that counsels the provinces on

which prescription drugs should be covered by government drug plans.

The important underlying issue, of course, is that governments need to

make decisions — and make them promptly and in a transparent manner.

Health-care dollars are not unlimited, and provinces and territories need

to be able to allocate scare resources as they see fit, even if doing so

is going to upset some people.

The last thing we need is for the courts to be deciding, on a case-by-case

basis, what the medicare system should cover.

apicard@globeandmail.ca

[Author]

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