[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]

This may be the most important thing you could do for autistic children across Canada.

A group of us are going to be collecting petitions at Oakridge Mall on Sat, Dec 11 and Sunday Dec 12. There are eight of us so far. If we have more, we can also gather petitions at Canadian Superstore at Marine Drive. Our goal is to give 1000+ signatures from the Vancouver South riding, to Ujjal Dosanjh, Minister of Health.

You only need to hold a clipboard and ask people to sign. I have had feedback from parents who have done this already and they found most people are very supportive.

Please, if you live anywhere near Vancouver South and can afford to give 2 – 4 hours of your time, e-mail me. Two of us are driving in from White Rock and another couple are coming from Maple Ridge. We'd appreciate your help.

nancy Walton
wiklo@shaw.ca

[Jenn Ralph]

Do not send any petitions to Raymond Chan. Their office finally got back to me as per my request to make sure he would table my petitions. Apparently because he is a minister of state (multiculturalism) in the Cabinet, he cannot table petitions. His office did say that he would be supportive of the petition indirectly by getting Hedy or Keith to table any he received…
Anyway, to be safe I just sent mine to Chuck Cadman (ind) and Gary Lunn (cons).
FYI – Jenn.

[Andrew Kavchak]

Economical
Calgary Herald
Dec 3, 2004Page: A23
Section: News
Edition: Final
Byline: Michael Schweighardt

Autism treatment – Re: "Cruel but correct judicial decision," Editorial, Nov. 29.

I must correct some of the misleading statements in your editorial regarding Lovaas (not "Lovass") autism treatment, or applied behavioural analysis (ABA).

The Supreme Court of Canada did not find that ABA was not medically necessary. Their finding was that since ABA treatment is not doctor- or hospital-provided, it is not technically covered by the Canada Health Act.

Regarding the B.C. government's contention that the methodology is "novel, controversial, experimental, and not a medically necessary service", the methodology is essentially "operant conditioning", which can be traced back to B. F. Skinner. The U.S. surgeon general's report on autism states: "Thirty years of research demonstrated the efficacy of applied behavioural methods." Any "controversy" that existed in the past surrounded outdated methodologies in Lovaas treatment that never became part of ABA.

As for your contention that a treatment of $40,000 to $60,000 per year for a preschooler would mean "open season" on the health system, consider that institutionalization costs at least $100,000 per year during the life of a severely autistic individual. As a few years of treatment may sometimes postpone or even avoid the need for a few parents to institutionalize their children, the taxpayers are much better served when early AMA treatment is available.

Your comic, Clear Blue Water, recently dealt with autism. It is sad to note that your comics page is more accurate regarding autism than your editorial page.

Michael Schweighardt, Calgary

[Andrew Kavchak]

Autistic children need funding if they are to become self-reliant
The Edmonton Journal
Dec 3, 2004
Page: A19
Section: Letters
Edition: Final
Byline: David Hryciuk

I am shocked and sickened by the Supreme Court's ruling that the provinces don't have to pay for therapy for autistic children. ("Autistic children doomed for life — angry parents: Court agrees health system has financial limits," The Journal, Nov. 20).

As a young man with Asperger Syndrome, which can cause some of the same behavioural problems as autism, I closely understand the need for autistic children to receive the treatment that they need to begin a successful life.

In provinces without government coverage of this therapy, the vast majority of parents with autistic children cannot pay the sum of up to $60,000 per year for these services.

If some provinces continue to deny these parents help for their autistic children, many of them will become needlessly institutionalized.

This puts an even greater burden on taxpayers because many of these children have the potential to live just as successfully as anyone else had they been taught the social and life skills needed for self-reliance.

Since the Supreme Court's ruling has overturned the lawsuit for this funding, it will only continue to add to the growing magnitude of the social injustice that we have in our country.

Former prime ministers Pierre Trudeau and Lester B. Pearson would probably roll over in their graves if they saw what kind of social system we have in the land of "justice" now, and we should all be ashamed.

The only way to make a "just society" for tomorrow is to help the less fortunate today.

Funding must be put forward to help people like autistic children of today, because otherwise it will backfire and come back to haunt us down the road.

David Hryciuk, Edmonton

[Andrew Kavchak]

Hi Folks,
I could not help but see this item in the papers. Now that Australia appears to use autistic children for its propaganda purposes about helping disabled people and then denies them entry into the country, would the BC Attorney General extend an invitation to the child? After all, it's only mild and Lord knows we don't have double standards in this country.

Poster boy can't stay
The Vancouver Province
Dec 3, 2004Page: A26
Section: News
Edition: Final
Dateline: SYDNEY

SYDNEY — The family of 12-year-old Indian boy Rophin Morris, chosen to appear on an Australian government-sponsored calendar honouring people with disabilities, has been denied permanent residency in Australia because of the child's mild autism, his father Jude said yesterday.

[Andrew Kavchak]

Autism therapy should be fully funded
Winnipeg Free Press
Dec 3, 2004Page: A15
Section: Focus
Byline: Freelance Writer
Scott Holod

RECENTLY expanded and improved programs for autistic
children may be in jeopardy, following a ruling last week by
the Supreme Court of Canada.
Parents in British Columbia had argued their children's equality
rights under the Canada Health Act were being infringed because
the B.C. government refused to fund medically necessary treatment
for their children. The Supreme Court ruled (in Auton v. British
Columbia) that there was no discrimination and the province
had no obligation to fund intensive behavioural therapy. This
therapy has been proven to be the best hope for children with
autism.

The court's decision was primarily based on wording from the
Canada Health Act and the British Columbia Medical Protection
Act (MPA). The Canada Health Act makes a distinction between
"core" and "non-core" health services that provinces must provide
universally to all Canadians. The B.C. MPA lists what constitutes
a "core" and "non-core" health service and who is qualified
to deliver such services. Unfortunately, intensive behavioural
therapy falls under the "non-core" category, thus making it
an optional service for government to provide.
Treatment
The treatment known as Applied Behaviour Analysis (ABA), also
called Intensive Behavioural Intervention (IBI), has quickly
become the treatment of choice by many families with autistic
children. The efficacy of the treatment has been thoroughly
proven by a vast amount of scientific research and is considered
"best practice" in many autism circles. Both the New York State
Department of Health and the U.S. Surgeon General consider ABA
the only recommended treatment for autistic children. It was
this treatment the B.C. families were fighting to have
funded.
Provincial governments have begun to grudgingly accept the merit
of ABA and to slowly expand funding for it. Even the B.C. government,
which did not have any program in place when the legal fight
with parents began six years ago, now has a modest program in
place that pays about one-third of the cost of autism therapies
for children under six years of age. In Manitoba, we are fortunate
to have a publicly funded ABA program available to pre-school
children with autism, as the government here has had more foresight
than its counterparts. It is frightening to think, however,
that governments may now use the Supreme Court ruling to restrict
funding for autism therapies.
What is lost in the legal wrangling is the lives of autistic
children. ABA costs up to $60,000 per year. Families have not
only been forced to sell their assets, fundraise and mortgage
their houses to pay for this treatment, but also to undergo
the financial strain and stress of continually fighting governments
to provide necessary services for their children. Families have
found a way to help free their children from the solitary confinement
of autism, only to have governments hide the key to the prison
gate.
Cost savings
The B.C. government has argued it can't afford ABA treatment
and to provide it would create financial chaos and long-term
debt. Yet there have been many cost analyses done which clearly
show ABA therapy results in long-term cost savings to government
and Canadian taxpayers. It is projected that without treatment,
as many as 90 per cent of autistic children could face institutionalization
throughout their adult life, at a cost of $100,000 per year.
Conversely, scientific studies show that as many as 47 per cent
of the children who receive this treatment will be able to attend
school with little or no support and go on to lead independent,
fully productive lives. An additional 43 per cent will make
substantial gains and require a significantly reduced level
of support throughout school and as adults. With the incidence
and diagnosis of autism growing annually, it's clear it would
be fiscal suicide to not provide effective ABA treatment to
these children.
The Canada Health Act states its primary objective is "…to
protect, promote and restore the physical and mental well-being
of residents of Canada and to facilitate reasonable access to
health services without financial or other barriers." Our organization,
Manitoba Families for Effective Autism Treatment, will work
with similar groups across the country to convince the federal
and provincial governments of the need to fully fund autism
therapy, and the benefits of doing so.
Scott Holod is a director of Manitoba Families for Effective
Autism Treatment.

[David Chan]

Alas dear friends,

the more things change, The more they stay the same.

I know, I know 30.8 million dollars, we don't warehouse kids,
Pluz someone change the CD my kid isn't the only one that
perseverates on things OK

Getting tougher to be
Mr, P's Dad

Dave

[Monika Lange]

Re: Act BC
This is all I need to know:
1. Pat Mirenda – crown's star witness – specifically discredited by the Supreme Court
2. Jo-Anne Seip – POPARD – specifically discredited by the Supreme Court

Geez, someone tell me how to post anonymously. I couldn't figure it out.

[Nancy Walton]

South Fraser ASBC meeting: Thursday Dec 9, 7-9pm at Semiahmoo House Society, 15306 24th Ave.

"Holy Cow, they Ruled Against Our Kids!"
and
"What do we do NOW??"

Important information meeting for all parents who wish to provide ABA treatment for their children.

"Holy Cow, they Ruled Against Our Kids!"

Birgitta von Krosigk of North Shore Law will be talking about the Supreme Court of Canada's ruling in "The Attorney General of British Columbia et al v. Connor Auton et al" and what that means to past, present and future autism medical treatment funding at home in BC, and across the land.

A limited number of copies of the judgement will be available; we encourage you to bring your own copy of the ruling to follow along.

Judgements are available at:
http://www.lexum.umontreal.ca/csc-scc/cgi-bin/disp.pl/en/rec/html/2004scc078.wpd.html?query=%22auton%22&langue=en&selection=&database=en/jug&method=all&retour=/csc-scc/cgi-bin/srch.pl?language=en~~method=all~~database=en%2Fjug~~query=auton

"What do we do NOW?? "

After Birgitta's talk, I will bring parents up to date and answer any questions on petitioning activities for autism treatment. Find out what you can do to make a difference.

Refreshments will be served.

[Justin Himmelright]

ANNOUNCING THE LAUNCH OF THE OFFICIAL AUTISM PETITION WEBSITE.

Go to http://www.canadaautism.com to read the ruling, download the petition, read what you can do to help, download sample letters, fact sheets on autism etc. All the resources you need to collect signatures and lobby your MP.

Check it out!

[Author]

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