[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

[Andrew Kavchak]

ATTENTION!!! BREAKING NEWS!!!

Hello My Dear Friends!

I just got a call from Scott Reid MP's office with incredible news. Scott Reid tabled the petition in the House of Commons today and brought with him into the House of Commons the downloaded internet on-line petition that I gave him during the news conference on Tuesday which contained at the time 2,500 signatures. Although the rules of the House of Commons do not allow the tabling of the electronic petitions at this time, Mr. Reid asked for the unanimous approval of the members in the House of Commons to allow it and permission was granted unanimously. This is something that apparently never happens, or at least, it is very rare. Thus, a press release will be issued shortly which I will post as soon as I get it. The Hansard transcripts from this morning will be available on Monday and I will post that too.

Keep those signatures coming!!!!

Cheers!
Andrew (Ottawa)

[edgecombe]

I have the same question as Cindy and Alan regarding the petition. I have a friend in Ontario gathering signatures. Should I have her send the original petition to me to forward on with my signatures or does she need to send it to her MP in Ontario?

Thanks! dedgecombe@telus.net

[Andrew Kavchak]

Hi Folks,
Please check out the article about the autism petition and the picture currently on the homepage of Tuesday's media scrum along with the "featbc.org" sign!
Cheers!
Andrew
http://www.oacrs.com/index.htm

[Andrew Kavchak]

FYI everybody:

Cynical viewpoint
Globe & Mail
Nov 26, 2004
Page: A16
Section: Letter to the Editor
Edition: Metro
Byline: HEINZ WETZEL

Toronto
The response to the Supreme Court's autism ruling has not been
"cynical and misguided," as Andre Picard says (Nobody Said Drawing
The Line Is Easy — Nov. 25). Where it has been emotional, it
results from the despair of parents who see their autistic children
deprived of their only chance to get meaningful help. Does anybody
who knows the cruel facts want to argue with them?
It is Mr. Picard who is cynical: In pretending to protect the
Supreme Court from unfair criticism he goes on to insinuate
that the ABA/IBI therapy is dubious. He quotes one lukewarm
report, while an overwhelming number of specialist reports have
recognized the undoubted and decisive benefits of the
program.
Mr. Picard argues from a severely limited perspective and merely
on the basis of principle, where others have tried to make the
community and its politicians aware of the human tragedy involved,
and also of the immense cost to us all if these children must
spend their adult lives in group homes instead of becoming happy
and productive members of society.

[Andrew Kavchak]

Hi Folks,
One of the MPs who accepted the autism petition during the press conference in Ottawa on Tuesday, November 23 was NDP Tony Martin. Check out this press coverage below from the Sault Ste. Marie paper.
Cheers!
Andrew

Martin joins federal fight for autism funding
Sault Star

Nov 25, 2004Page: A4
Section: News
Edition: Final
Byline: Dan Bellerose

Sault Ste. Marie's MP has waded into the national debate on expensive early childhood treatment of autism.

Friday, the Supreme Court of Canada dealt a discouraging blow to the parents of about 100,000 autistic children, including dozens in Sault Ste. Marie and area, when it ruled that provincial governments could not be forced to pay for the treatments.

"I was disappointed with the high court ruling," said Tony Martin, who attended an all-party press conference in Ottawa on Tuesday to show federal-level support of families with autistic children.

"Families are taking on serious debt, in some instances mortgaging their homes, for intensive treatment that should be covered under the Canada Health Act."

An autistic child requires an overwhelming commitment of time, energy and money.

Intensive one-on-one treatment for 20 to 40 hours a week has produced life-altering results for many children, but it carries an exorbitant $60,000 annual price tag.

The Ontario government covers the cost of the intensive treatment for qualified children aged five and under, but funding is suspended upon the child's sixth birthday.

Ontario Premier Dalton McGuinty personally committed in writing during last year's election campaign to extend treatment coverage beyond age six, but is still reportedly reviewing implementation strategy.

"It's unfair to say that government is ignoring the families of autistic children, but support money flowing to them is modest," Martin said.

He said he believes only a handful of area families qualified for the maximum support payment.

"My personal opinion is that government has a social and ethical responsibility to cover treatment costs regardless of age."

He agrees with former provincial colleague Shelley Martel that autism intervention should be funded through OHIP — not excluded because it is not administered by a doctor or a hospital.

"All that's left for the parents is to continue lobbying government for change. . . . Ever-increasing numbers of autistic children tells me the subject is not going to go away anytime soon."

According to the Autism Society of Canada, two decades ago autism was diagnosed once in every 10,000 births — today the ratio is one in every 286 births.

Maria Esposito, a superintendent of education with the Huron-Superior Catholic District School Board, whose portfolio includes special education, says the board has 29 identified autism students in its classrooms as of last month.

"The numbers are up compared to a few years ago but I cannot say whether that is because of increased incidents (of autism) or better detection methods."

Officials with Algoma District School Board were unavailable for comment on its autistic student population but ADSB has twice the student population of Huron-Superior.

The Huron-Superior students are integrated throughout the system, from kindergarten to secondary school.

"It's an exciting field . . . educational advances are being made that, if taught properly, allow for the autistic child to achieve partial independence."

The one-on-one therapy, modified for each individual, breaks tasks down into small steps and positively reinforces every step learned.

Martin is expected to table a petition in the House of Commons this week containing the names of more than 40 Sault residents requesting government intervention in the matter.

David Orazietti, the Sault's Liberal MPP, was unavailable for comment.

There is no known cause or cure for autism, a dysfunction of the central nervous system that impairs social interaction, hinders communication and whose symptoms can range from mild to severe.

Ninety per cent of untreated autistic children end up in group homes or institutions.

[Alan Campbell]

We have been busy on the internet sending the petition to all our friends and family.
We now have a question……we have several petitions that are being signed in a few different ridings.
Mark Warawa (Conservative; Langley), James Rajotte (Conservative; Edmonton), Patricia Torsney (Liberal; Burlington), Geoff Regan (Liberal; Halifax), Hedy Fry (Liberal; Vancouver Centre).
Should we have our friends and family send them all back to us to deliver to our MP (Mark Warawa; Langley), or deliver them to their own MP's for a broader reach?
We've written our letters, sent out the e-mails and are shouting from any soap box we can to deliver our childrens message. Let us know what you all think is best with these petitions.
Thanks,
Cindy & Alan Campbell
(Elizabeth's proud parents)

[Justin Himmelright]

Linda Reids Letter to the Globe

please note that the
B.C. Ministry of Children and Family Development will continue to
provide a RANGE OF SERVICES for children and youth who have been
diagnosed with autism, regardless of litigation

and

The Ministry's funding programs offer families choice and flexibility to
assist them in choosing the therapies that best meet their child's
needs.

Here is Geoff Plant's quote from his CKNW interview with Michael Smyth this past week…….
"we want to tell our health experts to spend our money ONLY
on the therapies that are PROVEN to be successful"

So what's with that? The Ministry of Poverty is going to continue to support their contractor hacks while the AG calls for only PROVEN treatment to be paid for?

I have no problem with a "range of services" being offered, just don't waste my tax dollars on them. I only want my tax dollars to go to Proven Treatment.

You know what, here I live in country where I pay out 33% of my income to taxes. After that, I get to take what meager income I have left and try to provide treatment for the medical a-bomb that has hit my family. The politicians can't stand up to the bureaucrats and the judiciary can't stand up to the politicians. The laws don't protect my kids from bloodsucking system hacks and to top it all off the weather is cold and the winters are long. Let me tell you, the choice is pretty damn obvious. Even if there wasn't a public system in the US, at least I would have some money left over on my paycheque to buy the services I need.

What a joke!

[Barbara Rodrigues]

Thanks for posting that DeeDee. What an a@#. Is he a government hack on the side?? Here's a poem for people like him.

REMEMBER?

"First They Came for the Jews"
By Pastor Niemoller

First they came for the Jews and I did not speak out because I was not a Jew.

Then they came for the Communists and I did not speak out because I was not a Communist.

Then they came for the trade unionists and I did not speak out because I was not a trade unionist.

Then they came for me and there was no one left to speak out for me.

[Deleted User]

An article from today's Globe and Mail:

Nobody said drawing the line is easy
Principle, not emotion, ruled when our top court refused to force B.C. to pay for a treatment for autistic kidsBy ANDRE PICARDThursday, November 25, 2004

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

[Stephen Paperman]

I could be wrong, but I seem to recall Linda Reid having once been an employee of one of the useless government contractors-Gateway or Laurel Group, can't remember which. If true, it explains much about the Honorable Minister for the Protection of Autism Contractors. Of course I could be wrong.

By the way, Premier Campbell-and I know you're out there-it could be argued that a person who doesn't understand the fact that Lovaas Autism Treatment and ABA Autism Treatment are one and the same, and who in fact insists they are two completely different things in a letter to a Canadian national newspaper, may indeed not be the most adequate Member of the Legislative Post to have a ministerial position dealing with autism. In fact, it could easily be argued that for reasons of ignorance, misinformation, a clear and present bias against people affected by autism, and previous personal connections with autism service providers with the most to lose from the funding of proper, science-based autism treatment, that perhaps the best course of action might be to ask said minister to turn in her portfolio.

S.P.

[Author]

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