[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

[Deleted User]

I received this letter today from Linda Reid and thought I might share it with everyone. I'm curious why work so hard to defend EIBI when phase 2 is supposedly cancelled?

I'm also curious about the extensive and well-researched training… I've met a few therapists who have had the rather disappointing experience of working with EIBI people…if they were extensively trained, it wasn't in ABA. Oh, except the ones poached from Lovaas practicing families, therapists trained out of the pockets of families struggling to pay for the medical needs of their children because the government chooses to ignore medical needs.

The letter goes on to metion what I'd like to call "The stone soup approach" of throw in a bit of every type of therapy and hope the end result is palatable.

The only slightly positive note of the following letter is the mention of some sort of decision about individualized funding. Think plentiful thoughts. Think thoughts of medically based therapy provided for children of ALL ages. (and then maybe write to your M.L.A. and of course the Hon. Linda Reid about your concerns).

<<Dear Michelle Karren:

I am responding to your e-mail of August 14, 2001, forwarded to me by the
Honourable Gordon Campbell, Premier, regarding your support for
individualized funding and your concerns about the Early Intensive
Behavioural Intervention (EIBI) program. Please accept my apology for the
delay.

EIBI is a new program based on scientific evidence and best practices found
in current reports regarding effective treatment for children with Autism
Spectrum Disorder (ASD). This program was accepted by the Court as adhering
to best practices and meeting government's obligation to provide medically
necessary treatment to children with ASD under the age of six.

I recognize that for some families, Lovaas-style ABA is the recognized
standard of Applied Behavioural Analysis; however, ABA is, in fact, a widely
recognized teaching method and most behaviour consultants use its principles
and techniques. EIBI uses the teaching methods and principles of ABA and is
individualized to the specific needs of each child. It incorporates
multiple intervention techniques that include: speech/language pathology,
occupational/physical therapy, positive behavioural support, natural
teaching strategies and discrete trial training. I can assure you that the
training provided to staff of EIBI programs is extensive and
well-researched. The EIBI program is also being monitored and evaluated as
to effectiveness and outcomes.

It is estimated that implementing EIBI across the province for children
under the age of six will take three years. Given this implementation
timeline,
I realize that some children, who are eligible now, will not be eligible by
the time the service is available in their communities. As a result, MCFD
is implementing a kindergarten transition year program. This program has
been developed to provide service to children who are between four and six
years of age, who are not able to access an EIBI program. I would encourage
you to contact your local Community Living Services office for more
information if either of your children fit within the qualifying age range.
…/2
Michelle Karren
Page Two

Like you, some families have told us that individualized funding for their
choice of intervention based on the Lovaas method of ABA is their preferred
method for the delivery of early intensive behavioural intervention
services. The provision of individualized funding is a complex issue and a
huge step for government so time needs to be taken to ensure that we get it
right. We are currently reviewing this option and should have a decision by
year-end.

Thank you for taking the time to write. I trust the above information is
helpful.

Sincerely,

Linda Reid
Minister of State

pc: Honourable Gordon Campbell

[Isaac]

The ongoing autism treatment dispute in BC is in the news again this week.

The link below downloads the front page piece from Okanagan’s widely distributed “Penticton Western”.

Full story is at –> https://featbc.org/downloads/Penticton_Western_11_13_01.pdf

Isaac
(Miki*s Dad)

[Jenny Obando]

Hello my name is Jenny and I have a 3 year old son diagnosed with autism . Like every body else we are also trying to get funding for our ABA program.

I have been in contact with our local MLA in Maple Ridge and he is open for a metting on November 29th . I think that if we come together as a group we may have a better chance than if we approach as individuals.
We are also trying to have Linda Reid at the meetting since she will be in Richmond the following day.
So for any parents out there in the Maple Ridge and Pitt Medows area you can contact me by phone:
466-9047 or e-mail at: divedoc@telus.net
Thanks
Jenny ( Tristen's mom)

[Deleted User]

To: Ruth Wingein and Stephen Schertzer,
Thank you.
I'd like to add to this helplist The Attachment Theory by dr. Gordon Neufeld, which helped me a lot. Krystyna(Elizabeth's mom)

[Susan Burns]

sorry this sounds a bit negative…..i normally can just shake most of this stuff off….i am having no response to my contact with my mla…mapleridge…basically i am wondering if i ever will see funds for James' treatment…….i cannot afford another consult with autism partnership….without selling a kidney…. also i have sad news from revenue canada….they insist that i must start paying benefits for my pt workers…..i am hoping for a response from this chat…..sorry about the whining.

[FEAT BC Admin]

The Gazette (Montreal)

Thu 01 Nov 2001

News

A3

IRWIN BLOCK

When Marc-Antoine Lussier was 2, he was unable to talk. He would shake objects in front of his eyes and flap his arms like a bird.

His parents, Pincourt accountant Carole Ladouceur and Martin Lussier, a software engineer, were shocked when the child wouldn't stop crying at his birthday party until he was alone in his room. He never touched his cake or opened a single gift.

Something was terribly wrong, but it took a year and a half to get an official hospital diagnosis: he was autistic.

Specialists said the boy needed intensive therapy as soon as possible, as much as 40 hours a week of applied behavioural analysis to nurture cognitive skills. But all the regional health board could offer was an hour a week.

The family decided to act on its own, much like 98 others in Quebec who yesterday also launched a class-action suit demanding better services from Quebec and compensation for all the money they have had to spend.

The Lussier family has been getting private help for about a year and a half – at an estimated cost of $35,000 – for daily visits from an educational therapist. The program is supervised by a private psychologist.

Today, Marc-Antoine is 5 and his mother can't believe the progress he's made. "It's changed our lives – and his," his mother beamed.

Surrounded by cameras and a clutch of journalists yesterday, the smiling, friendly child listened to a five-sentence story recited by therapist Isabelle Goyette, then answered simple questions about the owl sitting on the branch and hooted to mimic it.

"He's in a regular kindergarten now and every afternoon he works at home with an educational therapist," his mother said.

Yesterday, the families held a press conference at their lawyer's office to announce that after almost a year of research, they were seeking leave in Quebec Superior court to sue Quebec, the rehabilitation services in their area and the Monteregie regional health board.

The suit is on behalf of 104 children with developmental problems and autism. It holds Quebec and its health agencies responsible for not providing adequate services, which it claims discriminates against the children by violating principles enshrined in the Quebec and Canadian charters of rights.

They are demanding $50,000 each in damages as well as full reimbursement of amounts spent for care, and $15,000 each in exemplary damages because fundamental rights were denied.

The suit also asks the court to order Quebec and its agencies to put in place programs for early stimulation of developmentally delayed and autistic children under age 6 to ensure maximum development and train qualified personnel to offer appropriate therapy.

Parents say Quebec is far behind other provinces in providing this type of therapy, which is a good investment since it paves the way for autonomy for many.

Not intervening means an autistic child needs full support – at $65,000 a year – for life, they point out.

Last year, Quebec allocated $5 million for therapy for children with speech disorders and those with autism. This spring, Pauline Marois, acting as health minister, allocated an addition $8 million for centres for the intellectually handicapped and urged them to put an emphasis on autism.

But not all have done so, said Peter Zwack, vice-president of the Canadian Society for Autism.

– Irwin Block's E-mail address is

iblock@thegazette.southam.ca

[FEAT BC Admin]

Autism Society Canada

News Release, October 31, 2001

Autism: 100 Families in Quebec Undertake A Class Action Suit Against their Provincial Government

With today's announcement in Quebec of a class action suit by nearly 100 families of children with autism, this brings to six provinces in which parents of children with autism have been forced to undertake legal action to access a medically necessary treatment. This treatment, intensive behavioral therapy, can significantly alleviate and, in many cases, almost eliminate the often severe symptoms of autism which can include the inability to communicate, repetitive behaviors, and little or no social interaction. Research indicates that the earlier treatment begins, the better are the results.

Autism epidemic: the hidden Canadian human and financial cost

The recent rapid increase in the number of cases of autism in Canada has accelerated at what many cite as epidemic proportions. It is estimated that about 1000 Canadian children born each year will develop autism spectrum disorders by the age of 3, but difficulties with delayed diagnosis are resulting in an estimated 3000 new Canadian cases being identified. Using data from three provinces, it is also estimated that there are over 100 000 Canadians with autism conditions. A large number of these people, because they receive ineffective or inappropriate treatments, or for whom effective
treatment is inaccessible for political and financial reasons, will remain severely handicapped and will require as much as $2 million each in public services over their lifetimes. In Canada, this translates into an annual cost of about $3 billion. In addition to this multi-billion dollar health, education and social service expenditure, the cost in human terms in incalculable. On the other hand, scientific studies have shown that effective treatment, especially when undertaken early, reduces significantly both the
human and financial costs, with lifetime financial costs being cut in half.

Autism: a failure of the Canadian health system

The Canadian service systems, in most regions of the country, continue to fail to provide what the British Columbia Supreme Court has declared a medically necessary treatment while continuing to misuse hundreds of millions of dollars on ineffective and
inappropriate treatments. What other medical condition is so poorly addressed that families are driven to pursue litigation to obtain a medically necessary treatment? No other medical conditions have produced so much avoidable tragedy including, in the last 5 years, the apparent murder of 3 children with autism spectrum disorders by
their parents. Autism Society Canada calls on the Canadian Government for the immediate establishment of an Autism Secretariat to address these autism issues, including development of national standards based on best practices and universal no-cost accessibility to effective treatments and adequate supports for people of all ages with autism conditions.

– 30 –

[Isaac]

Vancouver Sun ran an editorial today on government policy and the ongoing autism treatment dispute … editorial can be downloaded from the FEAT BC server at https://featbc.org/downloads/sun_oped_10_30_01.pdf

Isaac (Miki*s Dad)

[Sabrina Freeman]

Several people have contacted us to ask about whether an individualized funding (‘IF’) mechanism for autism treatment is really going to become a reality in BC. This is the information we have so far.

There has been NO official government press release or documentation yet confirming an IF program. However, according to Minister Gordon Hogg*s comments on the Bill Good show, the next round of RFP*s have been canceled and $4.5 million has been earmarked for some form of individualized funding. In addition, based on the information Minister Hogg conveyed to Jeff Rudd (Victoria Times Colonist reporter) an additional $10 million dollars is still earmarked for early autism intervention, although we are not sure what form this will take.

These are many questions that remain:

1) How will individualized funding be administered?
2) How much money will be provided per child? Will it be tokenism or will this really pay for a genuine treatment program?
3) How does a parent apply for individualized funding and how big a role does social worker discretion play … who are the lucky children? We are hoping this will be an equitable process, but have no information about how fair and accessible the program will be.
4) When will the individualized funding program be up and running? What is the timeline?
5) When will there be an official announcement?
6) Will there be an age cut-off similar to the current, unfair 5 and under requirement for inclusion in the three sites of the government run autism program?

Due to all the unanswered questions, and the fact that the program HAS NOT BEEN ANNOUNCED formally yet, I strongly suggest everyone keep up the pressure on their MLA. I am convinced that it is all our collective efforts in recent weeks that are largely responsible for this individualized funding initiative. Your MLA has to be given the message that the silent majority 1) applauds the individualized funding decision and 2) fully expects that the children 6 and over will not be excluded from any individualized program as appears likely at this point.

If you have not contacted your MLA yet, please do so. Use information in the FEAT BC *CIAT* and *Broken Promises* briefs. Positively reinforce the government move to individualized funding for autism treatment and remind them of all the *natural consequences* in case MCFD is wavering on this decision. Shape their behavior so they learn to generalize to a natural environment i.e. we also need individualized funding for children 6 and older — they matter too!

Sabrina
(Miki's mom)

[Maureen St. Cyr]

Lou:

Your current release is acceptable to me, and
I suspect to most FEAT parents. Unfortuntately
what you describe as a "draft" was circulated
extensively, as I have already received three
copies of it myself — one from the Executive
Director of the ASBC, one from the
"momsonthemove" email address, and one
from the Executive Director of the North Shore
Disability Resource Centre.

I wish you luck with your event.

[Author]

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