[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]

Some time ago there was brief flurry of postings from a few people who were seeking full funding pursuant to the Anderson ruling. I was wondering if anyone has any updated information they would be willing to share (anonymously or otherwise).

Has anyone been successful in obtaining funding beyond the levels under the IEII program, as per the court ruling? Or even made any significant progress?

Many thanks.

[Isaac]

Yesterday (12/10/03) there was an article in the Globe and Mail (http://www.globeandmail.com) by the Justice Reporter. It's a scathing indictment of the Province of Ontario and further evidence that it's the permanent bureaucracy that really runs government where autism policy is concerned … not your elected politicians. The Premier of Ontario 's damage-control reply to the negative Globe and Mail publicity was quick out of the gate … as in 24 hours later. Both articles are below.

Isaac
(Miki’s Dad)

************************************************************

Province backs policy decried by Premier
Approach on help for autistic children called alarming in McGuinty letter

By KIRK MAKIN
JUSTICE REPORTER
Wednesday, Dec. 10, 2003

The Ontario government is aggressively fighting a multimillion-dollar courtroom battle to uphold an autism policy Premier Dalton McGuinty described in a recent letter as "unfair and discriminatory" to children who don't qualify for it.

Mr. McGuinty's letter — written to the parent of an autistic child about 10 days before the Ontario election — denounced the province for depriving autistic children over the age five of a widely hailed program capable of enhancing their ability to function in school and society.

While 500 children receive the program, another 1,000 are on a waiting list and will probably turn six before they can qualify, he said. (There are thought to be another 2,000 children over the age of six with an autism diagnosis.)

"It is alarming and unacceptable that there are almost twice as many on a waiting list," Mr. McGuinty wrote to the parent, Nancy Morrison.

"I also believe that the lack of government-funded [intensive behavioural intervention] treatment for autistic children over six is unfair and discriminatory.

"Sadly, as you and many other Ontario families are experiencing first-hand, far too few autistic children in our province are getting the help and support they so desperately need. The Ontario Liberals support extending autism treatment beyond the age of six."

Both sides are locked in the sixth month of a mammoth trial that has featured testimony from autistic children, parents, senior bureaucrats and expert witnesses from as far as California.

"The government's position is, if anything, more heated up than it was under the Ernie Eves' government, which seems incongrous," Ms. Eberts said in an interview yesterday.

"I would say the total bill for the province of Ontario to be resisting all these claims is vast."

Government spokesman Brendan Crawley said that in general, the province is assessing all ongoing litigation to see if it can be resolved outside the courtroom.

It may continue to litigate cases which have ramifications extending beyond its particulars, he said.

Lurking in the background is a B.C. ruling last year where the province was ordered to fund autism treatment to several families. The program involves a broad learning strategy that extends from in-class learning to socialization.

The B.C. case, known as Auton, is under appeal to the Supreme Court of Canada.

The 29 plaintiffs in Ontario allege that the provincial policy breaches Charter of Rights equality guarantees as well as the right to security of the person.

They are seeking damages and a declaration forcing the province to extend treatment to any child with an autism diagnosis.

Ms. Eberts said nothing prevents the province reaching a settlement right away in keeping with the sentiments Mr. McGuinty espoused. "In constitutional cases, it is perfectly open to the government of the day to give the attorney-general different instructions," she said.

Ms. Eberts cited a case several years ago in which Conservative Premier Mike Harris made a comparable move. The case, M vs. H, involved the division of property after the dissolution of a lesbian relationship. After taking over the government from the NDP, Mr. Harris hardened the province's position, she said.

Ms. Eberts also questioned the financial soundness of the provincial position. The plaintiffs' legal bill already stands at about $1.2-million, but Ontario has a larger team of lawyers and bureaucrats immersed in the case, she said. In addition, other government lawyers are busy fighting 50 human-rights complaints involving the autism policy and 15 parents have launched injunctions to obtain treatment funding.

Tammy Starr, one of these parents, said yesterday that it costs $30,000 to $50,000 annually to put a child through the autism program. "If both the plaintiffs and the province consider the age 6 cutoff to be 'unfair and discriminatory,' why don't they change the legislation?" she said in an interview.

"I'm very disappointed," Ms. Starr said. "I see people in their eighties routinely being given chemotherapy and other medical treatment. No one would dare deny them treatment regardless of their age."

************************************************************

Will help families, McGuinty promises
But legal battle over program for children with autism is necessary, Premier says

By RICHARD MACKIE

Thursday, Dec. 11, 2003

Ontario Premier Dalton McGuinty has promised that his government will help families with autistic children, despite the fact it is in court fighting parents seeking extended treatment for their children.

"I think we have a responsibility to help them," the Premier told reporters at Queen's Park yesterday. "We are determined to sit down with the families and find innovative solutions."

He said the Liberals are continuing to fight the court case, which was initiated under the former Progressive Conservative government, because of the point of law involved and the issue of the extent to which the courts can order governments to provide social programs.

"The best advice I have gotten from the Attorney-General is that there is something larger at stake here in terms of mandating governments to proceed with certain kinds of expenditures. That's why we're in court," Mr. McGuinty said.

In the legislature he said: "What the parents are asking the courts to do is to force the government to make certain kinds of expenditures. That has far-reaching effects beyond this particular issue."

While Mr. McGuinty talked of larger issues, the immediate focus of the court case is the fact that the government does not provide funds for children over age 5 to participate in a program that has proven successful in enhancing the ability of autistic children to function in school and society.

There are about 500 children benefiting from the program while another 1,000 are waiting to get into it and will likely turn 6 before they qualify. Further, an estimated 2,000 have passed age 6 and will never benefit from the program if the government holds to its present policy.

Prior to the election, Mr. McGuinty promised to change the policy to extend the program to children over 5. But the government is still in court fighting a group of parents who argue that it is a violation of the Charter of Rights and Freedoms to deprive the older children of the program.

Ontario's action is similar to a fight being waged by the British Columbia government, which has gone to the Supreme Court of Canada to appeal a court order that it must fund autism treatment for several families.

[Mike & Jean]

You can now find the EAI Eligible Expense Policy on the MCFD website (http://www.mcf.gov.bc.ca/autism/index.htm and http://www.mcf.gov.bc.ca/autism/eai.htm). The EAI Guidelines on the MCFD website will be amended early next week to include this information as well

[Maureen St. Cyr]

More nice news today from our friends in the east. From
today's Toronto Sun newspaper:

————————————

Autistic kids win injunction
Therapy to continue until ruling on funding
By KEVIN MASTERMAN, TORONTO SUN

Intensive specialized therapy for 10 autistic children should
continue, an Ontario court ruled yesterday in another blow
to government policy to cut off funding for the youngsters
when they turn six. It is the second such injunction granted
to maintain therapy while cases launched by the children's
parents are pending in court.

"The evidence satisfies me that each of the minor plaintiffs
will suffer irreparable harm if the injunction were not
granted," wrote Madam Justice Backhouse in her decision.

She wrote that although the government has concerns due
to "scarce resources," they must continue therapy during
the wait for a January court date.

"Although money is an important concern, it is not
anywhere near as an important concern as the welfare of
these autistic children," Backhouse wrote. "A 2 1/2-month
interruption in their therapy could prove disastrous."

Families with autistic children continue to fight the
government policy in a lawsuit and in human-rights
complaints, claiming the policy is discriminatory and runs
contrary to the principles of medicare.

A member of the latest injunction case, Carolyn Borgstadt,
said her son, Cameron, who faced having funding cut off in
two weeks on his sixth birthday, will now continue
treatment.

At 30 hours a week, the therapy costs over $50,000 a year.
The government picks up half the tab.

"I've seen people going broke, selling houses, and some
having to stop and seeing their children suffer," said
Borgstadt, who was the only member of the lawsuit to still
have funding in place for her child.

Cameron, diagnosed with a moderate case of autism at age
three, needs the sessions to keep focused on learning, his
mother said.

In two more years he'll be able to attend normal classes,
she said.

[Jenny Obando]

Hi Edna

Unfortunately not all service providers are ABA providers, these are two different things.
Because the individualized funding covers speech and language as well as OT and ABA the government's list includes all the centers who provide any of those services, some are ABA certified others aren't.
I guess if there are parents out there that don't want to do ABA but want to do SL or OT, they can use their funding for that.

Unfortunately all the providers get put into the same pool, and are not listed specifically by the service they provide, but rather that they provide a service.

I hope this helps.

Jenny ( Tristen's mom)

[Deleted User]

Elna, you aren't the only one wondering where that AS of BC list comes from. What I've been able to discover is that they don't make the list. They apparently just distribute it for the Ministry Against Children and Families, and it's they who make the list. So if you're a bonafide Lovaas-ABA provider, then you probably get on it if you go through enough hoops that they can't refuse. And if you're one of the hacks, quacks and flaks who make up the government's list of paid porkers at the public trough, then you get on the list the easy way. As usual for our families, it's caveat emptor. Ask for references, ask for CVs from staff and lists of where they attained their Lovaas Autism Treatment qualifications (hint-Gutway and Popoff don't count), and see if they pass the sniff test. Many of the so-called providers on that list smell like bacon, and have been immortalized in BC court judgements as the providers of babysitting services. They shall go nameless, but you may know who they are.

There may be more I don't know on the list who are qualified, but I'd start with these-they are the ones I have at least heard something good about.

ABC Lisa Wincz Tel: (973) 898-9880 (office out of province)

Autism Partnership Andrea Sharpe Tel: (604) 632-4249

Autism Partnership (California) Tel: (562) 431-9293

Early Autism Project #103 – 3991 Henning Dr., Burnaby, B.C. Tel: (604) 473-5011

Catherine Sharpe, London, ON, Tel: (519) 645-9084 E-mail: Catherine_sharpe@sympatico.ca

Young Autism Porject (UCLA) Lovaas Tel: (310) 825-2961

Able Clinic Dr. Glen Davies Rachel D. Russell #6 – 15243 91 st Avenue, Surrey, BC V3R 8P8 Tel: (604) 584-3450 ext #9 Fax: (604) 584-3457 E-mail: rachelrussell74@hotmail.com

Lorelei Dake, Delta, BC, Tel: (604) 952-2036 E-mail: leidake@yahoo.com

[Elna Sund]

Hi

I am an ABA therapist and I am doing some research on ABA funding in BC.

I have downloaded a list of "qualified service providers" from autismbc.ca. I am slightly confused because I thought that the ABLE clinic and EAP were the only two clinics that provide qualified lovaas ABA therapy. The list has numerous agencies in BC–what do these agencies provide and how do parents of newly diagnosed children decipher between agencies that are implementing ABA services and those that aren't??
Thanks
Elna

[FEAT BC Admin]

Regarding a question posted to the board today: "Please show me where I can find the Anderson case outcome…"

The ruling is available for download from the FEAT BC site at this address:
–>http://www.featbc.org/legal_issues/

(Note: Adobe Acrobat is required to read the file)

[Susan Burns]

thx Isaac. I hoped you or another chat member would help me out. …..by the by……Is there any easier way to post……other than scrolling through almost 2 years of messages each time?

Susan

[Isaac]

Apologies … the correct address is below:

–>http://www.canadianchristianity.com/
cgi-bin/cgi?nationalupdates/030925autistic <–

[Author]

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