[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

 

---

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]

Thestar.com > News > Canada
Sep. 24, 2002. 01:00 AM

Printer friendly version Mail this story to a friend

Ombudsman to probe wait for autism treatment
Hundreds of children not receiving help, NDP MPP says
By Theresa Boyle
QUEEN'S PARK BUREAU

The province's ombudsman is launching an investigation into long waiting lists for children in need of autism treatment.

Clare Lewis sent a letter to NDP MPP Shelley Martel (Nickel Belt), agreeing to her request for a probe into the backlog of cases of autistic children waiting for Intensive Behavioural Intervention (IBI).

"I share your concern and intend to commence an investigation of this issue on my own motion," Lewis wrote in a letter dated Sept. 6, indicating that he, too, has received complaints about the issue and is taking up the probe on his own accord.

Some 900 children between the ages of 2 and 5 are on the waiting list for behavioural intervention. The Conservative government cuts off funding for the treatment once a child turns 6 years of age.

"Hundreds of children are turning 6 before ever receiving the treatment," Martel said.

The intensive approach involves trained therapists working one on one with children, reinforcing correct behaviour, language and academic skills.

Children typically require several years of treatment, but studies show the therapy can produce significant results — nearly half of autistic children can be taught to function normally.

Most of the other half of autistic children will show some improvement.

Parents argue that the treatment should be considered medically necessary and funded through the health ministry.

Instead, it's funded by the social services ministry, which applies more restrictions, such as the age limit, in covering the costs of care.

A separate complaint about age discrimination has been filed before the Ontario Human Rights Commission.

The B.C. Supreme Court recently ruled that IBI treatment is medically necessary. For the government to deny access to treatment is a breach of an autistic child's human rights, the court ruled.

Martel said she's encouraged by Lewis' investigation.

"When the ombudsman gets involved, that can add weight to our push for fairness and can force the government to right the wrong," she said.

"Autistic children need IBI treatment to have a chance of a near normal life. Now is the time to step up the pressure."

Because autism is recognized as a medical condition, it should be funded through the Ontario Health Insurance Plan, she said.

Martel also called on the government to do more to help autistic children in the public school system. Special education services now provided in Ottawa are being threatened because of budget cuts, she said.

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[Debra Antifaev]

Hi All,

I was just reading Norrah Whitney's post and I just have to ask a question with regard to the "Honourable"(the Governments' word not mine!) Linda Reid comments.
Is it Ms. Reid's opinion that just because a few lucky autistic children respond well to speech paths that we should limit the amount of funding available for ALL autistic children?
(You will note that she did NOT say "recovered from the effects of autism" or "became indistinguisable from their peers")
Based on this formula, should we allocate medical dollars based on the fastest and "cheapest" recovery from each medical trauma?
"Oh, I am so sorry, Mr Joe Blow, you have almost recovered from the flesh eating disease but Mr John Doe recovered in two days at a cost of $8,000 so we are forced to cut your treatment off today!!"
I met with Ms. Reid last year and she compared autistic children unfavourably to terminal cancer patients. I have asked her repeatedly to clarify her comments and the position of the Liberal Government and she has refused.
I have reminded her that even when patients are terminal they receive medical dollars in the form of pallative care.

Norrah's post also mentions the billions spent on self-inflicted, preventable disease such as drug, alcohol and cigarette addiction. It should also be mentioned that recent studies from Washington have found that obesity is causing more chronic health problems and costs than smoking and heavy drinking.
I think we are all starting to see where this Government is placing the needs of our children and their right to medical treatment.
Autistic children are simply not a priority.

Debra
Ben's Mom

[Deleted User]

HL:Parents of special needs kids head to courts in fight for costly programs

By Michael Tutton
The Canadian Press

Parents of children with learning disabilities are on the legal warpath
this fall for costly teaching programs they say could save their children's
futures.
In at least four provinces, parents are either expecting key
decisions
by courts or launching test cases that could mean their kids receive
specialized training outside mainstream classes.
But governments defending the cases say if the parents win it could
potentially cost provincial coffers millions of dollars. And some
special-needs teachers argue similar improvements can be achieved in regular
classrooms. A human rights case held in a Moncton, N.B., hotel room last
week is an example of the kind of battle being waged.
Bonnie Cudmore, mother of a 14-year-old boy with attention deficit
disorder – a medical condition that harms his ability to concentrate in a
regular class – has argued the province should pay for her son to attend
Landmark East school.
The private boarding school in Nova Scotia costs about $25,000 a year.
Cudmore also argued the province owes her the $75,000 she's spent to
date for the small-classroom environment and personal training that has
helped her son excel at school and cope with his disorder.
The human rights case has taken 30 days so far – the longest in the
province's history – but like many parents in similar conflicts, Cudmore is
tenacious.
"Our house is for sale and we basically don't have two cents to rub
together and I don't care because it's for my son," she said in an
interview.

"We'll go all the way to the Supreme Court of Canada with this if we
have to."
Across Canada, families are also using human rights acts or arguing
Charter of Rights cases, using Section 15 provisions that protect the rights
of the disabled.
– Four families of children with autism, a mental disorder, are
awaiting
an appeal by the province before the British Columbia Court of Appeal. The
parents won an earlier decision at trial division when a judge ruled each
parent should receive $20,000 for treatment.
The treatment, known as Applied Behaviour Analysis or ABA, is a form of
one-on-one therapy administered for up to 40 hours a week for two to three
years. It costs between $45,000 and $60,000 a year for each child.
– In Ontario, 28 families are suing the province to receive similar
services for autistic children over six years old. The trial is expected to
begin within three weeks. The province already provides the service for
children under six through the Department of Children and Family
Development.
– In Dartmouth, N.S., the principal of Thomas Aquinas school – which
teaches children with attention deficit disorders – said parents are
preparing test cases that could require the province to pay annual fees of
$15,500 to send children to the school.
– Norrah Whitney, a mother of a six-year-old autistic boy, has launched
a human rights case in Ontario, arguing that cutting off Applied Behavioural
Analysis treatment at age six is a violation of his rights.
Dennis Cochrane, the deputy minister of education in Nova Scotia, says
provincial governments are resisting in court for both financial and
philosophical reasons.
"Very often it's just a question of resources," he said in an
interview.
"We have so much money and so many children to serve."
The cost per pupil in the public system is about $5,000 to $6,000, he
said. The various lawsuits are asking the provinces to pay fees three to 10
times as high.
Cochrane also asks where the trend toward demanding services outside
schools will stop.
"Once you get into the slippery slope and you're saying in the public
system you can't meet the needs of disabled children, what does it mean for
gifted children at the other end of the spectrum?"
Those arguments hold little water with parents who worry their autistic
children can grow so frustrated in regular schools they will descend into
intense tantrums, injuring themselves and ending up in institutions.
In Halifax, Joyce Dassonville, the mother of a seven-year-old girl with
autism, has quit her job at a downtown law firm to pursue her lawsuit
against the province and start an independent school for kids with autism.
She has spent hundreds of hours preparing a Charter of Rights challenge
before the Nova Scotia Supreme Court, arguing her daughter Dominique
Dassonville-Trudel is entitled to the ABA treatment.
"If she had cancer, the government would pay for her chemotherapy," she
said.
"Parents are starting to find out there are very effective treatments
that are available and paid for in other places and it's not available to
their children."
Lawyers argue the treatments save society huge amounts of money over
the
longer term.
Birgitta von Krosigk, the North Vancouver lawyer leading the British
Columbia case, presented evidence at the trial that said providing the
treatment saved up to $1 million per child in future institutional care.
Some special educators are not convinced.
Kathy Myketyn, a lecturer on special-needs education at Acadia
University in Wolfville, N.S., said the cases mainly demonstrate provincial
governments have to improve what's offered within schools for children with
severe learning disabilities.
"Even for those children there can be appropriate kinds of learning and
teaching happening with the teacher and the children in a regular classroom
context," she said in an interview.
"There is no reason for these children to be trained or taught in these
segregated settings in a very elitist way." Linda Reid, the minister of
state for early childhood development in British Columbia, argues the
answer
lies in tailoring the programs provided to each child.
She said of the roughly 500 children with autism in the province, many
may not need the most expensive treatment.
"There's an entire range of behaviours. There are families today who
are
treating their child's disorder successfully with speech therapy to the tune
of $1,000 a month .-.-. the program has to be matched to the child."

CP 1405ES 15-09-02

________________________________________________
I know the press does a good job covering our issues, I wish though people would stop confusing a precise science treatment with education, although both can be addressed on a parallel they ARE different things.

What I find most interesting about the only argument repeatedly made by
various government officials, is that they seem not to be able to read
provincial annual audits that are readily available to any member of the
public.
Perhaps they need some perspective training…because I dunno call me crazy
here but when we can spend 3.8 BILLION dollars per year in Ontario alone on
PREVENTABLE disease – smoking and alcohol related how do you argue you can't
afford it for those who never had or made a choice in having Autism, none of
whom I confidently challenge eagerly pariticpated in the precipitation of
their condition/n.illness.

It is my pleasure to inform others on the list that the Ontario Human Rights
Commission has accepted Jurisdiction of my son's case. Luke shall proceed on
the basis that termination of his ABA treatment is a direct violation of his
Human Rights. I will not be able to answer private emails or discuss matters
of the case until it is over, so I can not nor will not be repsonding to
private emails regarding the case.
Please keep Luke in your prayers.

best regards,
Norrah Whitney

[Linda Cucek]

Friday, September 13, 2002

James Cucek, is again, in the hospital for side effects and the wrong medication. I spoke to male and female nurses John and Blgit which noted that, as of yesterday (Sept.12), James has been seen crawling along the floor each time he heads for the bathroom, situated directly across the hall from his room. To observe an 18 year old member of our family behaving in this way was extremely upsetting to us all. This represents "a milestone" in his over-all behaviour, for the worst. There was no doubt that James was clearly over-medicated.

Why doesn’t Premier Gordon Campbell, just keep his promise to James and give him the Lovaas treatment. The medical community is just using him as "a guinea pig" in their experiments.

Hope to see you at Port Moody Senior High School, September 27th, 2002
from 7 to 9 pm. Please email me if you need any further information regarding Fran & Kim Peek, "Rain man", coming to Port Moody, BC. Lindacucek@shaw.ca

Regards,

Linda Cucek

James Cucek’s mom

[Sabrina Freeman]

Hello everyone,

I am posting to the discussion group in response to requests by those who want some additional background on the Government sponsored Autism 2002 conference, and the role of academics and government players in the long-running MCFD effort against families in the Auton case.

First, regarding the speakers at the conference, Dr. Tristram Smith is a very well known and respected researcher in the autism field and is a professor at the University of Rochester in New York. He received his doctorate at UCLA, working closely with Dr. Lovaas. Since that time, he has published several studies on the UCLA model of autism treatment (the protocol designed by Lovaas and colleagues). From my reading of his studies and reviews, Dr. Smith is very well informed regarding the latest research on intensive Behavioral Treatment. On a personal note, I would very much like to hear his views on the state of the science.

In terms of the local speakers, Dr. Pat Mirenda will be on an expert panel during the conference. Dr. Mirenda is an Associate Professor of Special Education in the Faculty of Education at U.B.C, Department of Educational and Counseling Psychology and Special Education: (http://www.educ.ubc.ca/faculty/pmirenda/mirenda.htm). Prior to this, Dr. Mirenda was the Director of Research and Training for four years with CBI Consultants, a longtime B.C. government autism services contractor. CBI consultants provided an affidavit for Attorney General lawyers to defend government in the Auton case. Of note is that BC Supreme Court rejected all government contracted service providers because they do not provide medically necessary autism treatment. To my knowledge, Dr. Mirenda was not affiliated with CBI at the time.

One aspect of Dr. Mirenda's very close relationship with government is that she, along with Dr. Jill Calder (a board member of the ASBC) and Ms. Deborah Pugh (former Executive Director of the ASBC), were all appointed to a special BC Government committee — created during the NDP Government as a response to the Auton case — to help decide which autism service providers would receive government's three rounds of contracts for the so-called "EIBI" program. As many of you know, the EIBI program was offered up to the BC Supreme Court as a "remedy" in the Auton case — a part of the ruling cross-appealed by the families.

It is also my understanding that Dr. Mirenda is one of a group at U.B.C. who received a sizeable contract from the Children's Ministry to evaluate the same 'EIBI' program U.B.C. helped create for the Attorney General's effort against parents in the Auton case. This costly MCFD 'evaluation' contract ($1,200,000) was awarded to U.B.C. by a senior civil servant in the children's ministry — Ms. Robyn Syme — now working essentially as the Deputy Minister of State for Linda Reid, Minister of State for Early Childhood Development. Ms. Syme is Executive Director of the Early Childhood Development and Community Living Services Division, MCFD.

Of note is that this MCFD evaluation contract DID NOT go out to tender. In other words, there was no competitive bidding permitted to determine who is best suited for the EIBI evaluation work; the children's Ministry simply issued an expedient "intent to contract" notification. (Available for perusal at http://www.featbc.org/downloads/MCF_UBC_Contract.PDF). The reason Ms. Syme gave for not going out to bid on this lucrative autism contract is that, purportedly, only academics from UBC are "uniquely qualified" to do an evaluation of the program. Of course that claim is more than a bit of a stretch, but it is also problematic for another reason: UBC helped develop government's made-for-court "EIBI" autism pilot project (formerly known as P-CARD) and is now entrusted with evaluation of it's own program. You would not be alone if first thoughts that come to mind on all this are 'conflict of interest'.

The MCFD argument that autism research in this province can only be competently done as a 'Made in BC solution' stretches the limits of credulity. Science and knowledge have no borders, so the MCFD evaluation contract, summarily awarded without competition, has all the appearance of a cynical effort to achieve a predetermined, politically motivated outcome i.e., potentially a 'cook the data' effort in the fight against Lovaas-ABA parents, as opposed to genuine autism treatment research. One certainly hopes that the academics involved in the EIBI evaluation project will resist any pressure from MCFD to come up with a predetermined outcome. One certainly hopes that the UBC Ethical Guidelines will be strictly adhered to, unlike when the B.C. Office of Health Technology Assessment at U.B.C. was asked by the Health Ministry to help out in the Auton case with anti-lovaas research that was ultimately found by BC Supreme Court to be "obviously biased" and of "minimal value".

Another member of the expert panel is Dr. R. Gerald Kysela. Professor Emeritus, Educational Psychology, University of Alberta. Dr. Kysela is very much involved in MCFD's EIBI program as well. Prior to his work in B.C., he was involved in government autism programs in Alberta. It is my understanding he is relied upon by MCFD as the most senior Autism expert and that all three of BC's EIBI sites rely upon his autism expertise. I have been told he was awarded the Okanagan grant for the EIBI, but I haven't seen documentation to that effect.

In terms of government bureaucrats and politicians involved in the Autism 2002 conference, the office of Ms. Linda Reid, 'Minister for Children Six and under', is underwriting the event. You may be interested to know that Ms. Robyn Syme — whom some of you met last year at an MCFD meeting held in Coquitlam — was promoted from her key autism role during the NDP days in MCF, to her current position as Honorable Linda Reid's most senior civil servant. Of note is that Ms. Syme was well aware of Dr. Strain's adversarial role against families in the Auton case as a government expert.

In addition, another key civil servant you should know about is Ms. Randi Mjolness, an MCFD policy analyst who also received a promotion after her involvement in the Auton case, where she provided Attorney General lawyers with an affidavit describing all the purportedly wonderful autism services the children's ministry offered at the time the case was heard (think Monty Python's Cheese Shop sketch). Ms. Mjolsness is now in charge of the new, post Auton 'Provincial Autism Initiatives Branch', as well as the 'Children & Youth with Special Needs Unit' at MCFD. Ms. Mjolsness was also at last years MCFD meeting held in Coquitlam.

In terms of whether it is worthwhile attending this conference, here are some thoughts. It is always a good idea to take advantage of opportunities where purported experts are speaking on the topic of autism. Fortunately, the $235 cover charge for parents of kids 6 and over has been reduced to $25. For those of you who are planning to attend, simply go in with a critical, but open mind.

What to Look for at the Autism 2002 Conference

Some themes to look for that are not generally part of academe, but actually a government agenda, are the following:

GOVERNMENT THEME #1: PARENTS AS THERAPISTS

When academics speak about "teaching parents" skills, or "supporting families", this is often a code — Orwellian double speak if you will — for "teach the parents the rudimentary skills and that's good enough because we as a government can't possibly be expected to treat these children on a costly, ongoing basis". The longtime government strategy: teach the parents, whose labour is free, and then government can appear to be doing something." That's why government sponsored several parent-training sessions via CBI all over the province in 2001, so they could tell a judge they're supposedly doing something about systemic autism discrimination and neglect in B.C.

Please keep in mind that government bureaucrats very much favour 'processed based' evaluation criteria, wherein they can report to higher-ups how much money they have spent, how many meetings they sponsored or attended, how many workshops they sponsored, and how many conferences they organized – but never mind actual outcome of autism policy. Remember, if the Auton Case is appealed to the Supreme Court of Canada, the Autism 2002 conference will likely be used as evidence that the Government of B.C. is actually working in good faith to improve autism treatment practices in B.C.! Truth is, government bureaucrats and in-house policy analysts despise outcome-based evaluations because it means they actually have to prove that what they're spending your tax dollars on is genuinely effective, or perhaps face up to the opposite. That is extraordinarily inconvenient for MCFD's senior civil servants. We parents, on the other hand, DEMAND outcome-based evaluation because it's our children's futures at stake, not simply a government job or a promotion-imperative that's aiming for the more prestigious South facing corner office.

If you choose to attend the government Autism 2002 conference and hear so-called experts attempting to academically justify the rationing of autism health care (a.k.a. therapy hours), you should know that this works to support government's agenda, cloaked in academic legitimacy.

GOVERNMENT THEME #2: CHOICES

Choices (or lack thereof) are another theme government uses in attempts to ration health-care. When government speaks about "choices," for the most part what they are actually saying is "choices, except for Intensive Behavioral Treatment," i.e., Lovaas. There are two reasons for this; first, the government doesn't want to fund Lovaas Treatment (ABA-DTT), which is clearly more expensive than any other so-called treatments for autism due to the intensity and the degree of expertise required for bona fide treatment. In addition, most of the other choices in autism treatment can be offered by the autism services industry MCFD contracts with in B.C. When you are at the conference, and the speakers are attempting to academically legitimate other "choices," note that those choices generally play into the government's less expensive category. For example, pre-school based programs where pre-school teachers and parents get "quick and dirty" training; this low cost, expertise-free option works very well with the government agenda. In fact, it is a virtual certainty you will hear at Autism 2002 about the supposedly great therapeutic pre-school model from Manitoba, but I'll wait until after the conference so we can all share thoughts in this.

GOVERNMENT THEME #3: AVERSIVES

If speakers at Government's Autism 2002 emphasize that their form of therapy is "positive behaviorism" or "positive behavioral support", what is unsaid in the innuendo is that somehow, what "those FEAT people do" with their kids, by inference, is somehow negative or harmful to the child; outrageous as that may sound, those are the spurious charges that are leveled by anti Lovaas academics; Government's case in the Auton hearings was fully stocked with this red herring. If any one at the Autism 2002 conference start to take pot shots at mild aversives used by Dr. Lovaas in his early research work, but fails to mention that this was over thirty years ago at the dawn of autism research and not in any way part of successful replications of Lovaas research data today, please keep in mind that this is an all too typical critique of Lovaas-ABA and arguably an indication that the conference may be designed to support the government agenda against B.C. families.

At any rate, at the conference we'll have to sample the daily specials MCFD's got cooking in their special needs café. I'll see some of you there.

Sabrina
(Miki's Mom)

[Deleted User]

Thanks to everyone who helped me with info on how to bypass Sunnyhill for a diagnosis, and helped me to get info on how to do it privately. I must share my frustration from my events today and also ask anyone out there what to do. My son is 3 and we have been running a half(you know what) ABA program from our home, however the money issue keeps us from going where we want to go. How delighted we were about the IEII. Finally, and a huge hug goes out to all those that helped to make this happen. First we were told that we would get our funding even though we didn't have the physcological(sp??) diagnosis, and that because we were on the list that was all that counted. The money was there for us. We got our team together, develop the "Plan" and jumped through all of the hoops. Yesterday we found out that no we have to have ALL diagnosis BEFORE the funding is released. WOW A FEW PEOPLE HAD AN EARFULL FROM ME YESTERDAY, because we all know how long Sunnyhill can be. Anyway I made a few phone calls with some harsh words yesterday and today I get a phone call from Sunnyhill saying that we can come on this Thursday. What??? I have no idea how this happened. From a 2 year wait list to 1 week. Anyway, this was good news, we could now have the complete multidisciplinary diagnosis and get the ball rolling. Instead of calling me directly, my case worker E-mailed me today that there is no more money in the IEII funding and we will not be getting our money, but to be put on a waitlist. No one has a clue how long!!! What the???!!! I am at my ropes end, we have fought and struggled to jump through the hoops and have put up with so much mis-information. Words can not described my anger right now. Who do I write to? Who do I talk to? How do I make my voice heard? Does anyone else know about the money running out and about this disgusting wait list?

Lisa
Nathan's angry, frustrated mom

[Deleted User]

Our child recieved a diagnosis from a peadtrician privately. Sunny Hill has such a long waitlist. Also, I don't feel they are always the best to diagnosis the kids because they are too government. Meaning sometimes they don't like to label kids with autism even though they truly have it.

Many avenues such as behavioural peadtrician, Able clinic etc are faster and effective. Good luck!

[Deleted User]

I had a no diagnosis from Sunny Hill after waiting for 2 years…. They didn't want to label my son as they felt it would limit him…. I ended up taking my son to a child psychiatrist who with a speech therapist, and a psychologist as well as a social worker from MCF helped diagnosis my son with autism at 8 1/2 years of age. Better late than never!! Yes, it was expensive but it was a whole lot better than Sunny Hill's "very unique" and "difficult to label" diagnosis.

[Kimberley Yoshihara]

We decided to get our diagnosis privately – we paid a pediatrician and a psychologist and we also had an assessment done by a speech path in order to qualify for the funding. We were told by our social worker that we needed 2 or 3 assessments done in order to qualify for the funding. We too are wait listed at Sunny Hill (our daughter is 3.5) and we were told it would be atleast 1.5 years before we would be seen by them – we decided that was too long and decided to go private. It was expensive for us but worth it. email me if you want more info kaedgar@hotmail.com

good luck

Kimberley

[Deleted User]

Hi, I need some info on the "multidisciplinary approach" needed for the IEII funding. We were told by our woman in Campbell River that as long as our 3 year old son was on the wait list for Sunnyhill that he would qualify for the funding. We have been waiting for the money expecting it any day, and today we were told that this is not true. He actually has to have the M approach before the money is released. He is on Sunnyhill list but with a 18 mth waitlist. He will be 5 when this happens. Much too long!! Where else is there to go in Bc, Alberta, etc. for this? Please any information would be greatly appreciated at this point.

Nathan's frustrated mom
Lisa

[Author]

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