[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

[Isaac]

Here’s a reply to ‘Anonymous, June 12, 2003 – 04:54 pm,’ who asks:

>Can someone tell me what kind of program ‘EIBI’ is?
>Thanks so much!

The short answer: it’s bogus and fraudulent. Run the other way (there are binders of evidence).

Government’s propensity for expropriation of language to win a strategic objective is the tried and tested ‘tool of choice’ in the bureaucrats’ trusty kit bag. Give something a lofty name and folks will think it’s legitimate and important, especially if it’s got a BC government coat of arms attached. Never mind that the program is a billboard for hopeless incompetence in autism treatment delivery, but IS really effective at shoveling millions of your tax dough into the ‘all-heat-no-light’ furnace of autism services contractors and encumbered university professors doing “research” on your kids.

To ‘Anonymous, June 12, 2003 – 04:54 pm’ I would say this: the government authors of the EIBI tragedy play are the same nameless, faceless policy technocrats on Courtney St. (Victoria), whose mission in life is to social-engineer everyone ELSE’S life — namely yours and your child’s. Don’t let them do it. Your child is too important.

In the case of MCFD’s tin plated ‘EIBI’ program, we have a MAJOR case of terminolgy theft — a linguistic heist of legendary proportion. Picture this: in broad daylight, in front of dozens of courtroom witnesses, including a BC Supreme Court judge who’s presiding over the Auton ‘remedy’ hearings (after government lost in July 2000) a BC Attorney General lawyer has the temerity to stand before the court and simply STEAL the famous nameplate off of Dr. Lovaas’ decades old, successful psychology research program on autism treatment research — what we all know today as EIBI (Early Intensive Behavioural Intervention a.k.a. Lovaas-ABA). Steal a car? You’re in serious trouble. Steal the name off someone’s lifelong work, well that’s just the normal give and take and hurly burly in a BC superior courtroom, didn’t you know?

So what did the A/G lawyer actually say to the judge? Just paraphrasing, of course, but it was something in line with, “yeah, my lady, that’s it. We’re going to do that EIBI thing for the kiddies with autism to satisfy your ruling. Trust us. We’re for real. It’s all set up – we have an action plan and everything. All’s we need is a bit more time to get those RFP’s lined for the 75 kids, capacity problems in the regions and all.” Perhaps it wasn’t said EXACTLY that way, but I remember it was very much in that spirit.

Quite amazing really, what a lawyer can pull off with a straight face soon after they Hellijet over from the Attorney General’s Ministry – with more than a little help from policy friends at MCFD-Early Child Development and a professor or two at UBC’s Faculty of Education. Their combined efforts couldn’t defeat the Auton case on the merits. Government produced nothing but hollow arguments and evidence that failed, including the biased, fraudulent UBC health technology research that was tossed out of court. Government lost big – twice. “But how to snatch victory from the jaws of defeat,” pondered the intrepid MCFD bureaucrats on Courtney St. No worries! Just slap a fake label on a repackaged pilot project from UBC’s Education Faculty (originally the MCF Deputy Minister’s “Autism Pilot Project,” an affidavit, unveiled a mere 24 hours before the Auton case started) then simmer on low, serve anew as ‘EIBI,’ with relish but sans any evidence that the damn thing’s legit, and VOILA!

Does this recipe of government legal subterfuge sound too impossibly fast-and-loose to comprehend? Arrogant bureaucrats and Attorney General lawyers playing big-time games with the courts? Well, you can all decide that for yourselves, but to be sure, there’s no real EIBI protocol behind the ‘EIBI’ program, in the same way the outdoor market near Waikiki has nice looking Gucci bags that haven’t traveled through Italy and loads of shiny Rolex watches from Hong Kong that never came close to the Swiss Alps … or that Universal Studios tour with beautiful Hollywood sets and nothing much behind the front door. You get the point. Rule of thumb is if it’s audacious enough, people will believe it, even if it’s thoroughly outrageous government fraud sold to a judge. But that only works in the short run.

So, welcome one and all (and bienvenue, newcomers from Quebec) to the Children’s Ministry EIBI program! Next tour to the back lot leaves right after the waitlisted, multidisciplinary diagnosis from Sunnyhill. Try to miss that train if you can.

Isaac
(Miki’s Dad)

[Jenny Obando]

Has anyone heard the cuts the ministry for children and families is planning for next year, there is an articule in the province from Sunday. You can get it by going to the province website and going to archives, search word: Funding cuts, the title is: Liberal consider deep cuts to wide range of youth sevices.

There is mention to cuts for behavioral treatment for autism.

I am not sure what are they going to cut, s is the funding is not enough.

Jenny(Tristen's mom)

[FEAT BC Admin]

ADMIN. REPOST (with apologies): Full text of the relevant Q/A in the Ontario Legislature is below.
___________________________________________________

The following questions were raised by Shelley Martel, MPP and NDP Critic for Health and Children's Issues, in the Ontario Legislature on May 28, 2003
AUTISM TREATMENT

Ms Shelley Martel (Nickel Belt): I have a question to the Minister of Community, Family and Children's Services. Yesterday, Judge Lane dismissed your government's attempt to appeal the ruling by Justice Gans which forces your government to pay for IBI treatment for six-year-old Andrew Lowrey. In his decision, Judge Lane said, "This case is about one six-year-old boy who will suffer irreparable harm if he does not receive this treatment." Hundreds of other autistic children like Andrew also face irreparable harm because your government cuts them off from IBI treatment when they turn age six, because they languish on a waiting list and never receive treatment at all, or because their parents face financial ruin as they try to pay for this costly treatment themselves.

Minister, when is your government going to do the right thing and fund IBI treatment for all autistic children who need it?

Hon Brenda Elliott (Minister of Community, Family and Children's Services): On this side, we are aware of the decision that was made yesterday. What that means is our commitment to helping those children and families who struggle with autism remains very strong. I say to the person in the third party across the way, who criticizes us on a regular basis for our autism programs, that under her government not one cent was ever given to autism. Under our government in 1999, we started a program that has now grown to $100 million, which responds to the research that says very intensive therapy to those children at the very critical early years is the right way to go. That is the expert advice we are following. We are supplementing that with a number of new programs, all aimed in one direction, and that is to help the children and the families who are struggling with autism.

Ms Martel: May I remind you, Minister, with respect to your commitment, that it was your government that was in court trying to appeal a ruling forcing you to pay for treatment for Andrew. That's the level of your commitment to these kids. May I also remind you that right now we have 29 Ontario families taking your government to court because you have arbitrarily cut off treatment for their children at age six; we have another 80 families who have filed complaints before the Ontario Human Rights Commission, arguing your government discriminates against their children on the basis of age; we have the Ombudsman, who is doing a special investigation because of the waiting lists for IBI treatments; and yesterday, Justice Lane dismissed your government's blatant attempt to try and undermine a court ruling that said Andrew's treatment should be paid for? I ask you again, Minister, when is your government going to do the right thing and pay for IBI treatment for every autistic child who needs it?

Hon Mrs Elliott: Our government understands that autism is a disorder of which the incidence appears to be growing. Researchers all around the world are trying to find a solution to help the children and families who are struggling with this disorder. That is why it is our government that has instituted not only the intensive behavioural intervention-type program that responds to the research that says it is the most effective provided at an early age, but we are moving forward with new programs, transition programs from those early year programs into school age and, for the first time in the history of Ontario, introducing out-of-school programs for children with autism who are of school age, in addition to the special education programs already offered in the province of Ontario. Why? Because we know that helping children is the right thing to do. That is why this government has $2.2 billion invested in programs for children.

[Isaac]

Court rules Ontario must fund boy's autism therapy

CP 05/27/03

A 6-year-old central Ontario boy has won a court decision requiring the provincial government to continue funding his treatment for autism.

Andrew Lowrey of Orillia was diagnosed with the serious and disabling neurobehavioural syndrome when he was 4 years old.

The Ontario government funds intensive behavioural intervention (IBI) therapy for autistic children at a cost of about $50,000 per child per year. However, the funding ends when the child turns 6.

Andrew's parents, David and Maureen Lowrey, challenged the funding cut-off as age discriminatory and contrary to the Canadian Charter of Rights and Freedoms.

On April 11, 2003, Justice Arthur Gans of the Superior Court of Justice granted a temporary injunction compelling the government to continue funding the boy's therapy even though he had reached 6 years of age.

The injunction was to remain in place until Andrew's lawsuit was decided on its merits or until the judgments in similar cases were released later this year.

Justice George Lane dismissed the government's appeal of that decision today.

"Our family is ecstatic, overjoyed and relieved," David Lowrey said in a release.

"Many autistic children can be cured of autism, if they get IBI treatment early enough and long enough. Andrew was late entering IBI therapy, but his progress was truly exceptional and his prognosis is excellent."

"This is a great decision for Andrew, and for other autistic children," said Patrick Lassaline, one of several lawyers representing Andrew in his legal challenge.

This may be the last legal challenge for the boy, said the lawyer who argued Andrew's motion before Lane.

"Similar cases are currently being heard in the Ontario Superior Court of Justice and decisions may be rendered later this year. The outcome in those cases will likely
determine the law on a final basis, subject to any appeals," said Robert Durante.

"Although those decisions will impact Andrew's case, hopefully Andrew's IBI treatment will have run its intended therapeutic course by that time."

[Guy Emond]

Hi,

I am writing from Alberta. The AB gov has just given Royal Assent to the Family Supports for Children with Disabilities Act, which replaces the former Child Welfare Act.

More than a few parents with special needs children see this as an attempt to further restrict parents from accessing "public dollars" through Resources for Children with Disabilities (formerly Handicapped Children' Services).

Many thought things were bad enough when — for two years — parents were being turned away with the excuse of "not in the jurisdiction of Handicapped CHildren' Services.

As your child is now a student (school age) look to Alberta Learning and the School Act. The Court of QB Stratkotter decision of Nov. 202 put an end to that roadblock and now they'll use the Family Supports for Children with Disabilities Act.

I was just chatting with Sabrina Freeman, who was saying "don't worry they can't get away with any more shinannigans…" (okay, so Sabrina didn't say shinanigans). Having said that, I received just this morning 2 letters from the Department informing me that they are reviewing all "school age" children' needs for eligibility under the "new Act." Just two weeks ago I was reading a letter that said they'd be reviewing "school age" children' needs — via existing medical and service provider information on file – to make amendments to their existing HCS Agreements. Man that was fast.

I know they're going to bust my chops (and other parents' chops — those with "school age" kids) for a while but I'm also glad I filed 2 Actions in Court of QB under the old Child Welfare Act and more importantly under the precedent setting Stratkotter /Sullivan Decision.

The government has no choice but to go to Court of QB with me and have the matter heard and considered only under the old Child Welfare Act.

Time will tell if it was worth the effort, but I'm guessing it'll make a world of difference, compared to meeting eligibility criteria under the New Act.

Guy Emond
Calgary, AB.
(403)520-7424

[Deleted User]

Hi all
I wonder if anyone knows anything about wellfare rights?
I'm on wellfare and I have an autistic child. I'm having a hard time to prepare all the stuff that my consultant needs in order to start my child's program. I called my wellfare worker and asked for help but she said no.I also called her supervisor about that but there was no help either.I don't know what to do if I can't have enough all those things .I wonder where I can get help.If someone know something about wellfare rights, please give me advice.Thank you so much.My email address is trinht28@hotmail.com

[Deleted User]

Yeah, the Dix article was nothing but partisan crap posing as fact. Undoubtedly the 'facts' reported therein will be cited by the NDP and others of their ilk to bolster their bogus claim to moral superiority.

A pox on all politicians!

[Deleted User]

In my opinion, as long as greed and complacency dictate people's decisions at election time, they will also dictate government's policy, no matter which party happens to win. No ideology, communist, fascist, or whatever, can substitute for compassion. By not understanding that, people allow themselves to be manipulated, and the result is evident in our plight.

[Deleted User]

So why should we be surprised? Joy MacPhail … the same former NDP Minister who was every autistic child’s worst nightmare when she was the NDP’s Social Services Minister — and then promoted to Health Minister — now apparently seeks to reclaim the NDP’s tired, self anointed title of ‘party of the disadvantaged’ by trashing the Liberal Finance Minister over MCFD budget cuts (via proxy: the former NDP government strategist, Adrian Dix, now writes for the Victoria Times Colonist — article reprinted in full below). With apologies to Joy … the argument that Liberal MCFD cuts are somehow hurting ALL kids with disabilities is misleading and inaccurate. Families with children struggling against autism — who got squat under her NDP government — know better.

> > Times Colonist
> > Ministry shambles is Collins' baby

Gee, now there's a 'fair and balanced' title for an article.

> > By Adrian Dix
> >
> > The Ministry of Children and Family Development restructuring plan
> > is in a
> > shambles — budget targets missed, child protection service levels
> > slashed
> > and outside consultants imported to make sense of it all. Finance

> > consider these facts: the largest single spending
> > cut in
> > total dollars implemented by the B.C. Liberals is to the Ministry of
> > Children and Family Development.

Interesting article, but there's some budgetary alchemy she missed. Autism is exempt from the budget ax! Let's give SOME credit where due.

Comrade Dix forgot to mention that the only MCFD programs NOT cut (actually, they're seeing huge proportionate increases) are those related to autism treatment (amazing what a bit of court action can accomplish ;-)

As inadequate as autism treatment funding and policies still are, the new budget-cut-proof dough for ‘A’ is courtesy of the same small (but enthusiastic) group of advocates that badly undercut Dix’s party's much vaunted claim to virtue and moral purity over social issues. The sharpest possible contrast of Liberal vs. NDP autism policy is this: an individualized funding proposal for autism treatment — the CIAT brief — is hand delivered to the new Liberal Premier and presto, two weeks later a program is announced entitled IEII (or some such). Despite Syme's best efforts, 500+ families are now getting significant (although far from adequate and age limited) funding. Nevertheless, this still represents HUGE progress over the barren landscape of the NDP's autism policies — but Ms. Dix forgot to mention that.

The Libs have lots of issues (major flip flops, broken promises, etc.) but there's no question that autistic kids are FAR better off now than in the darkest days when Joy and Co. were in charge.

___________________________________________________
Article from the Times Colonist, 05/20/03

‘Ministry shambles is Collins' baby’
By Adrian Dix (Adrian Dix was a strategist with the NDP government)

The Ministry of Children and Family Development restructuring plan is in a shambles — budget targets missed, child protection service levels slashed and outside consultants imported to make sense of it all. Finance Minister Gary Collins is pointing fingers, and this time it is not at the NDP. Like a perpetrator in a rerun of Murder She Wrote, Collins has been leaking and spinning his self-interested version of events at the expense of his cabinet colleague Gordon Hogg. Not surprisingly, Collins is diverting attention, because this fiasco is principally his responsibility, followed closely by the premier.

In June and July 2001, the finance minister announced tax cuts targeted at the wealthy and B.C.'s largest corporations totaling some $2.2 billion annually or more than $8 billion over the government's mandate. The tax cut was implemented without any analysis of its fiscal impact and the minister's comical projections of economic growth were soon being revised downward. Collins was breaking new ground in budget-making. No government in Canada had ever implemented such dramatic changes to the revenue side of the ledger without even considering the impact on government programs or finances. Imagine a parent who chose to quit his or her job, without even considering the fact that he or she might not be able to pay the family rent, and food bills. This is Gary Collins budget-making 101. Having dramatically reduced revenues and created the largest deficit in B.C. history, Collins and his Treasury Board staff sought to slash government expenditures: their biggest target — the Ministry of Children and Family Development. With the exception of health and education, all ministries were expected to submit budgets with spending cuts between 20 and 35 per cent. Hogg's ministry faced a cut of 23 per cent.

Given the Treasury Board-imposed targets, Hogg had little choice but to reduce the number of children in care, to slash dangerously the number of investigations of abuse and attempt to devolve services to regional entities. However, devolving responsibility to the regions while simultaneously cutting funding was bound to fail, in spite of Hogg's evident energy and passion.

Treasury Board and the finance minister approved the ministry's original plan to cut expenditures and service levels. They had the responsibility to analyze ministry budgets, consider options and ensure the proposals were realistic.

On the face of it, a radical restructuring of services and a 23 per cent cut to resources meant that children-in-care would not be adequately protected. There was no way the targets could be reached. Yet, Gary Collins and Treasury Board staff signed off on these plans without offering to the ministry the opportunity of exemption from this severe level of budget cuts.

Now, two years into the B.C. Liberal mandate, Treasury Board staff has conducted a review of the ministry's performance and discovered that the restructuring plan will not meet its budget or service targets. Where was Treasury Board two years ago when it might have mattered, especially to children suffering from the impact of government policies?

For four years, Opposition Leader Gordon Campbell attacked the NDP on issues of child protection. Specific tragedies and children's deaths were blamed on cabinet minister and government policies. A cursory review of Hansard for the years 1997, 1998, 1999 and 2000 shows more than 30 requests from Gordon Campbell and B.C. Liberal MLAs for more spending on child protection. One example raised by Opposition Leader Joy MacPhail last week is from May 13th, 1997 when opposition leader Campbell stated: "It's clear that to do the job of protecting children, more resources are going to be required."

Outside the House he added, "Big changes cost money if we're going to protect kids." In reading these comments by the premier — repeated again and again prior, to his election — consider these facts: the largest single spending cut in total dollars implemented by the B.C. Liberals is to the Ministry of Children and Family Development. Single parent families received a cut in income assistance rates. This is worse than a broken promise. It is a betrayal of the interests of children. The responsibility for the resulting fiasco rests with the minister of finance and the premier. There is a direct line from the ill-considered tax cuts to the troubles of the Ministry of Children and Family Development. The only direct beneficiaries of these the ministry changes are accountants and consultants: those who proposed the restructuring and those now tasked to undo it. As the premier prepares to shuffle his cabinet, Hogg should not be forced to carry the can for the government's bad faith. If a minister should be dropped from cabinet for this fiasco, it ought to be Collins. No wonder our finance minister has been so quick to point fingers.

Adrian Dix was a strategist with the NDP government.

[Isaac]

For those who may have missed it, CKNW Radio's Bill Good interview with Jean Lewis, regarding Supreme Court of Canada's decision to hear BC's appeal of the landmark Auton ruling on medically necessary autism treatment, can be heard on the FEAT BC server — here's the address:

https://featbc.org/files/media/radio/good_05_15_03.html

[Author]

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