[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

[Linda Cucek]

Linda Reid, promised Stan and I, that after the Autism 2002 conference she would look after seeing James Cucek who is 18 years old get the proper Lovaas Treatment (ABA). She still hasn't answered any of my letters or emails its going on two weeks now.

She has not taken care of all ages this is not a true statement.

The reason Fran and Kim Peek, original people movie for "Rain man", was based on, was present for Autism 2002, was to advocate for James and all the other James' who are in need of the "Lovaas" therapy. Also, I invited them on the behalf of Principal Dan Derpak, who is a wonderful principal, to have the Peeks speak at the Port Moody High School, it was taped on City TV, the anchorman was Peter Clemente, he did a terriffic job, he showed Kim Peek and his talents plus showed James before he was drugged how great a piano player he is, after being in the hospital crawling on the floor and how important it is for the government to fund James also the Lovaas treatment.

ABSOLUTELY NO, Linda Reid, is not helping all the children thats why I had this happen for James with the Peeks. I have pictures of both occassions if anyone wants them. My email is:
lindacucek@shaw.ca

In the Fight for the Rights of our children,

Linda Cucek James Mom

[Deleted User]

I called the Minister Reid's office yesterday and the clerk gave me the number to Ministry of Water. I was told it was a different government office. I called Minister Hogg's office yesterday and I was given no number, the clerk at the office had no idea whom to forward me to.

MSP NOW!

My opinion and MY EXPERIENCE. Ditto Debra.

[Jovana Ivanovic]

I need some clarifications of the current situation.

1. In the post that cites Linda Reid's comments on treatment and funding for autism (by the way, what is the source of these comments and where can it be found?) she says the Government is already meeting all needs of autistic children and their families. Does it mean that another low suit will be needed just to proove that it is not so?

2. What is the practical value of the latest court ruling: does the court have the power to force Government to comply with its ruling and how long would it take, years?

I hope someone with better understanding of the Canadian justice system and the common law can respond to my questions.

Thanks,
Jovana (Sofija's mom)

[Debra Antifaev]

How many parents are receiving enough money for their Lovaas therapy?
How many parents have been stalled in the quagmire that is the "multi-disciplinary" evaluation?
How many parents have had to become accountants and quasi-lawyers to negotiate the complex, badly written paper work?
Minister Reid's comments are offensive!
Shame on her and shame on the Liberal Government.
Statements full of untruths are called LIES.
People who tell lies are LIARS

Shame on this Government. We see clearly now what they think of our children and their value to society. I can "smell" an appeal coming on.

Shame! They would rather waste another small fortune on legal fees than on children.

Disgusted and disappointed,

Debra
Ben's Mom

[Deleted User]

I completely agree with 'anonymous' on Friday. My son will turn six this December and if he needs to, he should get ABA therapy after he is turns seven. The question is: what can we do to get the government to pay for these necessary services RIGHT NOW? Can we send them a bill? Will they pay? How many more lawsuits do they have to go through?

Any suggestions will be followed through. I already phoned and emailed all the Ministers.

[Deleted User]

My own thoughts….

I have a child over the magical number Minsiter Reid discusses. My child needs Lovaas and he needs it NOW. Not tommorrow. It is a choice, but it should be a choice by just swiping my care card. MSP should get a list of Lovaas style consultants and allow them to bill. Suggestions only (but a really nice one)

I called those numbers yesterday and I demanded MSP NOW. We need to stick together on this as much as possible. Am I wrong in once hearing that some one in this government of ours said if every child with autism had Lovaas that the symptoms would be gone or lessen?

For the record my opinion only, my thoughts.

[Deleted User]

>
Our office thought you might be interested in the following transcript of
Minister Linda Reid's comments yesterday on treatment and funding for
autism. I've also attached a copy of a Ministry of Children and Family
Development factsheet on services provided to children with autism.

Treatment for autism – Honorable Linda Reid, Minister of State for Early
Childhood Development – October 9, 2002

Reid: In terms of what we're doing, we're actually meeting the majority of
the needs in this province, if not all the needs. What we did when we were
elected on June 5 just a year ago was actually address and tackle.

What the Premier asked us to for many, many years was to have a provincial
response to those who were awaiting assessment and those who were awaiting
diagnosis. We have done that.

And I can tell you, by the end of this month we will have met that need.
There will be no one waiting for assessment diagnosis around autism. That
clears the way for treatment plans to be in place, and frankly are.

We have early intensive behavioural intervention programs operating in this
province. We have Vancouver Island covered off – Queen Alexandra Hospital.
We have the lower mainland through the Delta program. We have the interior
through the Okanagan program.

And now we have what we call individualized funding for almost 500 children
in the province of British Columbia. That has met the need for the children
who are zero to six years of age and who have autism. We have done, I think,
amazing work as a government in a very short space of time to address that
need.

The reason we chose the population we did is it's driven by the best
science. If indeed you want to engage in applied behavioural analysis, where
that intervention makes the most sense and is the most effective is when
children are under six years of age.

Reporter: Will the Lovass program be available at government expense?

Reid: We have families today who are purchasing aspects of Lovass at public
expense and engaging in programs that are very effective for their young
people.

Reporter: So it sounds as if the appeal court…. While the appeal court has
made the ruling, you've already anticipated that. You've moved forward, I
guess, without having to have that ruling.

Reid: Absolutely true. The determination put forward by the Attorney of the
time was that these programs can continue to be available regardless of the
outcome of the ruling. I believe that. I've delivered on that.

Certainly we have more than 500 families today receiving individualized
funding who have resources at their disposal that they have never had
before. I'm personally delighted with the progress we've made.

Reporter: So is everybody getting Lovass who needs it?

Reid: What we have said is that we will trust families to make the best
determination. We have families today who are choosing to use their
individual dollars to purchase speech-language therapies. We have
individuals who are choosing to purchase physiotherapy. We have lots of
families who are choosing to purchase behavioural interventions, many of
which are Lovass interventions.

No question, autism is a very complex disorder. Can you treat every child in
exactly the same way and expect a reasonable outcome? No. It's a spectrum
disorder.

Autism is a spectrum disorder, so you have children who are very mildly
affected. You have children who are very severely affected. That
determination determines the best intervention.

So there's some really good things happening. We're trusting families to
make really good choices about how to support their families, because it's a
disorder that affects an entire family. It's not just the child. It's the
parents. It's the siblings. It's the classmates. It's a disorder, frankly,
that's problematic for families in terms of something as simple as sleep.

Sleep deprivation is a huge issue. These little guys can survive on very
little sleep in any 24-hour period. So those families are usually moving at
tremendous rates to stay abreast of all the challenges of parenting
generally. This only complicates the issue.

Autism is around cognitive deficits in some instances – some instances not.
It's absolutely around communication deficits and issues around
socialization. So there is going to be differing interventions based on the
need of the child.

Reporter: It sounds as if there's going to be no appetite from your
government to appeal the ruling that Madam Justice Mary Saunders has brought
down.

Reid: That will be a determination reached by the Attorney.

Reporter: Okay. But you're not going to be in there advocating to appeal
this by the sounds of it.

Reid: My role is to deliver the best possible programming, and I believe we
are doing that.

[Isaac]

Hello Everyone,

The FEAT BC press release relating to the recent BC Court of Appeal ruling on autism treatment is available for download at this address:

https://featbc.org/downloads/JudgmentRelease2002_2.pdf

Regards,
Isaac (Miki's Dad)

[Deleted User]

Hi all i just phoned also. it sure felt good to tell someone who could do something about it. congrats to everyone on yesterdays ruling .I also emailed the ministers and the premier. it cant hurt right?

[Deleted User]

Okay, I have phoned. Perhaps it will help.
Everyone else please join in. Show the government that families are united in DEMANDING services for their children NOW!

[Author]

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