[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

[Nancy Walton]

IEII money

First of all, everyone should download the information from the web site that Claire Spencer posted march 6th. (thank your for that Claire)

Secondly,
If you have been receiving IEII money you MUST send in documentation of how you spent it over the past year AND you must send in reports from your consultant. You will NOT receive any more money after March 31 unless you have done this.

If you have not spent all your money, you must get a carryover agreement signed with your social worker. You can carry over the amount, but you won't get new money until this original money is used up and accounted for.

If you are late in using up your IEII or late in getting your paper work done, you will STILL get ALL of your next years IEII funds (that you "qualify" for), but the money will be divided over the months left over (you won't get a lump sum for the time you missed).

I know you hate to have to go to a social worker for medical treatment, but if you want your IEII money to continue, you must contact your social worker ASAP and find out what you need to do to get it.

Nancy Walton

[Tien Truong]

THERAPISTS WANTED!!! We are putting together a team to provide intensive one on one therapy for our bright, lovable 2 1/2 yrs old son. Must have skills are: energetic, organized, creative and easy-going. All training will be provided and encouraged. We live in Port Moody and we are hoping to fill positions rapidly. Pay is $ 8.50/hr. If you are interested please contact Tien at the following email address: precious_moment@shaw.ca

[Claire Spencer]

The Ministry has released information on the revised IEII Funding. The web address is: http://www.mcf.gov.bc.ca/autism/index.htm

Claire Spencer (Trevor's Mom)

[Deleted User]

In response to the article with Sabrina I think it was very well said on her part. Also to reply to the quote "Freeman said the government bulletin on the new program also lumps treatment for
these children in with things such as respite, supported child care and parent
support."

This is why I want "MSP" to handle my child's disablty. Not social service or Community Living.

I pay taxes, what for? If I don't have a say where my child services come from, why in the world do we bother paying taxes, espically if everything is going private? MSP is the only Minstry I want handling my child's Lovaas treatment.

MSP for Autism, because it is a medical disbility.

Nuff said.

[Isaac]

There is a relevant Victoria Times-Colonist story on front page,
Sunday March 2, 2003.

It can be downloaded here:
https://featbc.org/downolads/TimesColonist030302.pdf

For those who do not have Adobe Acrobat, the text only version of the piece is below.

________________________________________________

$11-million 'insult'
Court orders province to cover treatment costs but parents say amount is woefully
inadequate

Jeff Rud
Times Colonist

Sunday, March 02, 2003

The provincial government hails it as up to $11 million in new
funding for children with autism spectrum disorder.
But the head of a provincial advocacy group for the proper
treatment of autism describes it as an insult.

Sabrina Freeman, executive director of Families for Early Autism
Treatment of B.C., said the $11 million will be woefully
inadequate to cover treatment that the B.C. Court of Appeal has
ordered the government to provide.

"It's kind of like an insult,'' Freeman said.
"There's so much wrong with this, it's hard to know where to
start.''

Until now, children over the age of six have not been eligible
for any autism treatment funding from the province.

But the Court of Appeal decision against the province last
October mandated treatment be extended to children until their
physicians deem it is no longer of benefit, in effect making the
province responsible for funding treatment of older autistic
children.

The Ministry of Children and Family Development announced last
week that new funding for children 6-18 would be available
beginning April 1.

The release said direct funding of up to $6,000 a year will be available to
families for the purchase of extended autism-intervention services for
out-of-school hours.

Details of the program are sketchy, say parents.

"I haven't heard anything about it,'' said Karen Anthony of Victoria, whose
10-year-old son Ryan is among those who will be eligible.

"Eleven million dollars — they haven't really said where that goes and who that
goes to.''

The ministry release said families will be able to use the money "to choose
qualified consultants, behavioural interventionists and other therapists who best
suit their children's needs."

The ministry said the new funding builds on a broad range of services already
provided by four ministries — Health Services, Health Planning, Children and
Family Development and Education.

The release said the funding model is interim, "as responsibility for services to
children and youth with ASD will be moving to the community-living governance
authority once it is established.'' More detailed information will be available
to parents in mid-March, according to the release.

But Freeman said no matter what the model for the new funding looks like, it will
be inadequate because it will provide only up to $6,000 annually per child.

Freeman said Lovaas therapy, the only scientifically based treatment for the
disease, can cost as much as $60,000 annually per child. That intensive,
one-on-one therapy is based on 30 years of research by Dr. Ivar Lovaas of UCLA
and his contemporaries. Freeman said Lovaas therapy basically helps a child with
autism spectrum disorder put his life together "brick by brick.''

"You cannot set up a treatment program for $6,000,'' Freeman said. "It's just
ridiculous. Believe me, I wish we could do this program for $6,000."

Anthony's son has been on Lovaas therapy for six years. The family has gone
heavily into debt and her husband has taken on supplementary work to pay for
therapy that costs thousands of dollars a year, she said.

"We've basically been doing it on our own,'' Anthony said. "We wouldn't be going
into debt unless we thought it was a worthwhile thing.''

Anthony said her son's medical needs have been unfairly ignored for years.

"His medical needs have to be properly accommodated, like any other B.C.
citizen,'' she said. "His rights and freedoms are being violated on a daily
basis.''

Freeman said the government bulletin on the new program also lumps treatment for
these children in with things such as respite, supported child care and parent
support.

"This is completely different,'' Freeman said. "This is treatment that they
(government) have to provide. Four judges have already told them they have to
provide it and have recommended it be provided through the Health Ministry.''

Children age six and under who have autism spectrum disorder are currently
eligible for direct funding of up to $1,667 per month, or about $20,000 a year.
Even that still leaves them well short of what is medically necessary treatment,
Freeman said.

"Is our government paying one-third of a kid's chemotherapy treatment?" Freeman
said. "Of course not.''

Still, those parents are worried about their funding when the province goes to
the new community-living governance authority, Freeman said.

In 2000, a group of parents with autistic children sued the province over a lack
of funding for treatment of autism, resulting in B.C. Supreme Court Justice
Marion Allan ordering the government to provide "medically necessary" treatment
to these children.

A government appeal of the decision was heard last October. Not only did the
court uphold the first ruling, it also ordered the province to provide treatment
to all children under the autism spectrum disorder — not just those under seven
— until physicians say it is no longer beneficial.

The government is appealing to the Supreme Court of Canada. A spokesman for the
Ministry of the Attorney General said the provincial government would have no
comment on the case while it is before the courts.

Meanwhile, 23 of the same families involved in the original B.C. lawsuit have
launched another legal action against the government.

The families had originally asked for certification of a class action against the
government in 2000, Freeman said. She said the government's lead counsel insisted
that the class action wasn't necessary and that a decision in favour of the
children's rights would immediately change government policy.

That promise was not kept, Freeman said.

"They basically are reneging on the deal (the lawyer) made,'' she said.

The suit, which includes the Anthony family, is asking for reimbursement and the
cost of future treatment for all 23 families.

The World of Autism

[Linda Cucek]

For those of you who are interested:

James Cucek and Linda Cucek, will be on CBC
News between 6:00-7:00; its about ten minutes
long newsclip.

Regards,

Linda Cucek James' Mom

[Maureen St. Cyr]

Claire, the link just isn't making it through the email…if anyone simply follows the link at the bottom of your email notification back to the board itself, you'll find the entire link in Claire's post. And thank you — great story, great coverage, hopefully the politicians are paying attention.

[Claire Spencer]

Okay, this is getting frustrating!

Just follow the "headline" link from http://www.canada.com/victoria/timescolonist/

I hope it works this time!

Claire

[Claire Spencer]

Sorry – the whole link didn't appear in my first message. It should read:

http://www.canada.com/victoria/timescolonist/story.asp?id=BB9E8714-F6E3-44C4-8AF5-119E21364FCE

Claire

[Claire Spencer]

There's an article in today's Victoria Times Colonist regarding the inadequate $11 million in funding. Check out http://www.canada.com/victoria/timescolonist/story.asp?id=BB9E8714-F6E3-44C4-8AF5-119E21364FCE
Claire (Trevor's Mom)

[Author]

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