[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

[Asher and Tammy Steed]

Hello everyone,

I have collected 35 signatures on a petition to present to my MP
(James Moore of Port Moody – Coquitlam – PoCo). What is the
best next step? Send it to Ottawa or bring it in to his office?
Comments of the more experienced among us are welcome.

thanks,

Asher steeds@telus.net

[Andrew Kavchak]

Hi Folks,
Two relevant things occured in the House of Commons yesterday, Mon. Dec. 13, 2004. Among them, my son's name was mentioned as his grandparents' MP from Montreal tabled the petition!
Let's keep up the petition initiative!
Thanks to all who have contributed so far!
Andrew (Ottawa)

Rett Syndrome

Mr. Lloyd St. Amand (Brant, Lib.): Mr. Speaker, I wish to pay tribute to a very brave young lady and her parents. Olivia, a constituent of Brant, was diagnosed with Rett syndrome at an early age. Since then, her family has actively petitioned for increased medical funding and has also created a network of support for families affected by Rett syndrome.
Rett syndrome is a unique developmental disorder which begins in early infancy, almost always affecting females. Those with Rett syndrome lose previously acquired hand and verbal skills and remain dependent on care providers for life. Rett syndrome did not come to international attention until 1983. Since then, remarkable progress has been achieved in understanding the clinical history and pathophysiology of Rett syndrome.
I ask all hon. members to join me in commending Olivia and her family for their tremendous courage and determination.

Petitions

Mr. Massimo Pacetti (Saint-Léonard-Saint-Michel, Lib.): Mr. Speaker, it is my pleasure today to table a petition that has been presented to me by two of my constituents, Armande and Fiorindo Del Bianco, who are preoccupied by the lack of services provided to children diagnosed with autism. Their grandson Steven Mathew Kavchak is one of those children.
The petitioners requests that Parliament amend the Canada Health Act and corresponding regulations to include IBI, ABA therapy for children with autism as a necessary medical treatment and require that all provinces provide or fund this essential treatment for autism.
They also ask that Parliament contribute to the creation of academic chairs at universities in each province to teach IBI, ABA treatment at the undergraduate and doctoral levels so Canadian professionals will no longer be forced to leave the country to receive academic training in this field and so Canada will be able to develop the capacity to provide every Canadian with autism with the best IBI, ABA treatment available.

[Andrew Kavchak]

Hi Folks,
From the Toronto Star…

Dec. 13, 2004.
Parents heading to court over autism

IAN URQUHART

Undaunted by their recent loss at the Supreme Court of Canada, parents of autistic children are carrying their fight with the provincial government to another front.

The Supreme Court ruled last month that the provinces do not have an obligation to pay for treatment of autistic kids under public health care plans.

But a group of Ontario parents last week has launched a class-action suit claiming that the province is obliged to provide an education for autistic kids under both the Education Act, which guarantees access to public schools, and the Charter of Rights, which calls for equal treatment under the law.

It's a different line of attack and it may just succeed.

At issue is the government policy that cuts off public funding for intensive therapy for autistic children once they reach age 6, or school age.

When he was leader of the opposition, Dalton McGuinty called the age 6 cut-off "unfair and discriminatory" and promised to end it.

But now that he is Premier, the situation, as with so much in government, appears more complicated and the Liberal government has not exactly followed through on McGuinty's promise.

The Liberals have doubled spending on autism — from $40 million to $80 million. But for children age 6 and over, the new money will go toward hiring autism consultants whose job will be to train principals, teachers and educational assistants.

The government is not providing for the sort of one-on-one intervention in the classroom that many parents believe their children need.

Hence, these parents have taken their kids out of the schools and are paying more than $50,000 a year out of their own pockets for such instruction, either at home or in a private school.

What is going on here? Why have two successive governments — one Conservative, the other a supposedly more child-friendly Liberal regime — chosen to draw the line at age 6?

The easy assumption is that this is a purely financial issue. With an estimated 10,000 autistic kids in the province, it would cost the government hundreds of millions of dollars to provide intensive treatment for them all.

But in an interview last week, Marie Bountrogianni, Minister of Children and Youth Services, denied that money is at the root of the dispute. Rather, she suggested it is a philosophical dispute over the best way to deal with autistic children.

Bountrogianni, herself a former school psychologist who is knowledgeable about autism, said she appointed an expert panel and asked it to recommend the best approach, regardless of the cost.

"Their advice to me was that definitely IBI therapy is excellent therapy for some children with autism, not for all," she said. "The earlier the better.

"And then, once they are at school, they need to practise the skills that they established with IBI, those that qualified for it, and then they can apply it to a school situation, because it's an unreal situation to have a therapist constantly interacting with you while you are in school."

Bountrogianni noted that there are more than 8,000 autistic kids in the public school system right now.

But many parents of autistic children find the public school environment hostile. One parent says her son was kept in a broom closet all day. Others report that their kids are often being suspended for behavioural problems.

Len Levin, an American autism expert, tells an interesting story. He moved to Toronto in 2001 to try to bring a "state-of-the-art autism service" into our schools.

"I encountered obstacles every step of the way," he says. "The schools refused to work with my agency in any meaningful way, using arbitrary arguments such as treatment vs. education.

"We were optimistic with the change in provincial government last year, only to be stonewalled just as badly once the Liberals took office."

Levin has moved back to the United States, which, he says, offers much better support for autistic children in the schools.

"I had had enough," he explains. "I love Canada and Ontario and have great respect for the diversity and commitment to social principles that one sees on a daily basis, but the reality is that Ontario is the equivalent of a Third World country when it comes to special education in the schools, especially when it comes to educating students with autism."

But Bountrogianni is adamant. "All I know is that this is what I was told was the best way to tackle this challenge," she said.

To which the parents are saying: See you in court.

Ian Urquhart writes on provincial affairs. His column appears Monday, Wednesday and Saturday. iurquha@thestar.ca.

[Derek Leach]

Hello All:

Saturday on BCTV (timeline 9:05 through 10:20):

http://switchboard.real.com/player/email.html?PV=6.0.12&&title=BCCTV%20News%20Live&link=rtsp%3A%2F%2Ffs2.insinc.com%3A554%2Fbcctv%2Fvtv%2Dsat.smi

Note: This content may require the latest RealPlayer, which is not available on Windows 95, Mac OS9 or Linux systems.

[Derek Leach]

Hello All:

Saturday on BCTV (timeline 9:05 through 10:20):

http://switchboard.real.com/player/email.html?PV=6.0.12&&title=BCCTV%20News%20Live&link=rtsp%3A%2F%2Ffs2.insinc.com%3A554%2Fbcctv%2Fvtv%2Dsat.smi

Note: This content may require the latest RealPlayer, which is not available on Windows 95, Mac OS9 or Linux systems.

[Isaac]

On behalf of all FEAT families, a very big thank you to Dave Chan and all the FEAT parents who came together today to fight for our children's rights at Attorney General Plant's little soiree in Richmond. You are an inspiration to all of us, and what the dark side fears most … parents who are determined to see that justice is done for their children, no matter how long or difficult the struggle.

If a picture speaks a thousand words, then please click below for the weighty tome of David vs. Goliath …

–> https://featbc.org/downloads/robingelfer.jpg

[Barbara Rodrigues]

Hi:

Great job to the Parent's in Richmond!! Is anyone able to upload the BCTV news piece on the site?? I wasn't able to see it.

Barbara

[David Chan]

Happy holidays to our friends in government

we know it won't be a holiday for our kids

keep up the good work people

Mr. P's Dad

[Justin Himmelright]

Just saw the bit on CTV news at 6. Brilliant! Nice job everyone. Well spoken Bev and Robin. Geoff was looking a little desperate. Excellent signs! I have only one question. Who will be next on our naughty list this holiday season? Lumps of coal (and protestors) for everyone of them.

[Super Dad]

On Nov 29 Linda Reid sent out another letter that said:

"The MCFD is committed to provide autism intervention… The Supreme Court decision does not affect that committment. Families receiving Autism Funding: $20000 under age 6 and $6000 under age 19… will continue to receive their funding to purchase autism intervention."

Most parents will extrapolate that to mean:

"Families will continue to receive the SAME amount of funding, BEYOND the next provincial election. We don't have to fight and these FEAT people are getting all upset for nothing."

Linda Reid has two things we don't: 1) a complete list of all families affected by autism, and 2) an unlimited propaganda budget. This gives her the power to send letters like this to every family any time she wants to. I find this frustrating to the extreme.

Tony

[Author]

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