[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

[Peter Wong]

Hi All,

Not sure you guys read this.

http://vancouver.24hrs.ca/Columnists/NewsViewsAttitude/

Gordo's changes just plain rotten
By BILL TIELEMAN

I firmly believe that ordinary British Columbians would not want their government to act in such a cruel manner, which is why this has been done so secretively.

– Disability activist Dawn Steele

Underhanded, deceitful, disgusting and downright rotten.

Those are the only ways to describe one of the most despicable moves by the B.C. Liberal government when it comes to mistreating people with disabilities.

And with their record, that's really saying something.

Without notice to anyone affected, without consulting the public or disability groups, Premier Gordon Campbell has made changes that will have profound negative affects on adults with serious developmental disabilities.

Campbell and Children and Family Development Minister Tom Christensen secretly signed a July 18 Order-In-Council making an IQ of 70 or less one of the criteria for receiving disability services.

It lets the government evade a 2007 B.C. Court of Appeal ruling that the province cannot deny services to a disabled person simply because their IQ is over 70.

Dawn Steele, whose teenage son has autism, is shocked.

"This is a disgraceful, inexcusable move. It is not the way a civilized society operates," Steele said in an interview. "It will exacerbate the homeless crisis and it will not save taxpayers any money."

But it's no surprise that the B.C. Liberals are attacking people with disabilities – they've done it for years.

Gordon Campbell promised before the 2001 provincial election that a B.C. Liberal government: "Will increase emphasis on early childhood intervention programs for families with special needs children."

But in 2002, it appealed to the Supreme Court of Canada a B.C. Court of Appeal decision that the government was constitutionally obligated to fund behavioural therapy for children with autism.

The government's special need to save money was more important than special needs kids.

Also in 2002, I revealed a secret government document showing the B.C. Liberals planned to cut off benefits to 9,000 people with disabilities by forcing more than 18,000 of them and their doctors to complete a 23-page reassessment – with the goal to eliminate 50 per cent from getting social assistance.

Several suicides were reported by desperate individuals who feared they would be homeless and abandoned. The government eventually dropped most of the plan.

In this latest case, the Campbell government has completely reversed its own previous position.

"The easy response to the … court decision would have been to respond by simply legislating IQ," Christensen said last year. "We didn't think that was an appropriate response."

But now they do.

And, as a result, young adults with serious developmental disabilities and an IQ even a point above 70 will be cut off from government help, leaving them potentially helpless and on the street.

And that's just disgusting.

Hear Bill Tieleman Mondays at 10 a.m. on CKNW AM 980's Bill Good Show. Blog at:

billtieleman.blogspot.com

[Andrew Kavchak]

This is an interesting press release about the autism "Medical Migration" phenomenon in Canada. Perhaps the term "Medical Refugee" is also appropriate. Of course, this is not the first case of people moving from province to province to get treatment for their children with autism. Several years ago we organized a press conference at the Ontario Legislature with MPP Shelley Martel and one parent from Bowmanville who was about to leave for Alberta, and another parent who was on the line from Calgary who had earlier moved from Hamilton. The autism organizations in Alberta did not issue any press releases welcoming them, but in this case the high profile nature of the migrants now appears newsworthy! Is the St. Amant program that great? If so, should it serve as a model for other provinces? Comments?
_______________
MEDIA RELEASE

MANITOBA FAMILIES FOR EFFECTIVE AUTISM TREATMENT (MFEAT) WELCOMES NOVA SCOTIA FAMILY FORCED TO RELOCATE TO MANITOBA TO ACCESS PRE-SCHOOL AUTISM TREATMENT PROGRAM

28 July 2008
FOR IMMEDIATE RELEASE

MFEAT welcomes to Manitoba Dr. Leif Sigurdson and his wife Dr. Leanne van Amstel, parents of a child with Autism Spectrum Disorder (ASD) and medical migrants from Nova Scotia. As reported by CTV News last Sunday the family made the drastic decision to leave their careers in Halifax to access treatment for their three-year-old son, who was diagnosed with ASD a year ago. Their son will receive 35 hours of therapy per week in St. Amant's Applied Behavioral Analysis (ABA) program. It is unfortunate the family felt forced to relocate for sake of their child, but as Manitoba residents they will finally have access to the treatment their child needs to develop, while the province also gains two highly specialized medical professionals.

The disruption in the lives of this new Manitoba family is the reality facing many families caring for a child with ASD across Canada. While ASD is a serious neurologic condition of unknown cause, decades of studies have demonstrated that 25-35 hours of ABA per week significantly improves the cognitive and communicative function of children receiving it. The American Academy of Pediatrics, in its 2007 Clinical Report on managing ASD has written, “The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research … Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance …”.

Jamie Rogers, MFEAT’s Director of Communications can relate to the cross-country move made by the family, “When our two boys were diagnosed with ASD in BC in 2005 we were facing a debt of $80,000 per year to secure 35 hours of ABA per week. So we decided to move to Winnipeg to enrol in St Amant’s program. We learned of other out-of-province families in the program who waited tens of months without services following diagnosis or who were offered nothing at all. We are grateful to MFEAT for fighting to get the St Amant Pre-School ABA program in place, which has paid off enormously for our kids. No parent of a child with another serious medical condition has to move provinces or go bankrupt to obtain treatments that are proven effective, so why those with ASD? There is a Senate Standing Committee Report telling the government that families with an ASD child in this country are in a crisis that needs a national response, but it collects dust while our children and families endure major hardships.”

Founded in 1997, MFEAT is an advocacy and support group for families with a child, sibling, or loved one diagnosed with Autism Spectrum Disorder – a neurological condition that affects 1 in 150 children and has no known cure. Following years of negotiation with MFEAT, in 2002 Manitoba introduced a permanent pre-school ABA program for Manitoba families, the only one of its kind in Canada. MFEAT successfully convinced the Manitoba Government to implement a school-age ABA program, which was announced in June.

Media enquiries please contact:
Kevin Augustine, President MFEAT: 204-444-4169

[Mike & Jean]

This was a great event last year! Circle your calendars – don't be disappointed.

Have a good summer! I look forward to hearing from you.

Jean

Capone’s Restaurant & Live Jazz Club

…and…

The Autism Society of B.C.

…and…

FEAT of BC (Families for Early Autism Treatment of BC)

Invite you to the 2nd annual

"Medicare for Autism Now!" Fundraiser and Silent Auction

on

Saturday, September 6, 2008

6:00 – 11:00 p.m.

Enjoy BC wines, Capone’s famous martinis, tapas and cool jazz entertainment provided by Canada’s own Murray Porter at:

Capone’s Restaurant & Live Jazz Club

1141 Hamilton St. Vancouver

(between Davie & Helmken)

$89.00 per person – (includes valet parking, tapas, 5 drink tickets and opportunity to bid on and purchase from a fabulous collection of silent auction items)

All proceeds will be used to support the "Medicare for Autism Now!" campaign to make medically necessary treatment available for every Canadian with autism.

Due to limited space and the overwhelming success of last year’s event, please RSVP •••.a.p. to Jean Lewis at jean.lewis@telus.net or call 604-290-5737

Come out to raise a glass and raise some funds!

——————————————————————————–

[Andrew Kavchak]

The article below presents another angle on the autism is a "health" issue…

Of course a surgeon can afford to pick up and go anywhere (nothwithstanding that they can also afford private treatment anywhere) since there is a shortage of such professionals everywhere, but what about the average Joe Family?

I only wish the Nova Scotia Minister would tell federal Health Minister Clement what he is quoted below as saying… "Autism continues to grow every year at alarming rates,". Surprise! Surprise!

Last year on "Autism Awareness Day" Mr. Clement posted a message on his department website suggesting that there was no evidence of growth in autism prevalence rates. No! wait! He said that in his official government response to the Senate Committee Report recommending a National Autism Strategy. In either case, the guy on top does not appear to have any idea what's going on.

One note worth mentioning about the Manitoba contribution to our struggle: in 2004 I met with Manitoba MP Steven Fletcher who was the health critic and told him about autism and the discrimination in the Medicare system. He actually called me at home after reading some material I gave him. I thought I had opened his eyes to our community's plight. But then nothing.

I later saw him at a rally when he briefly showed up, and guess what he told me? He had visited the St. Amand location in Manitoba that provided autism treatment and the people there convinced him that apparently everything is "fine" and there was no need to agitate for a national anything because everything was fine with those folks in Manitoba.

He then told me that our community would need to build some consensus as to whether there was a problem in the first place and what our proposed solution was.

I was not surprised that the folks in Manitoba were so short-sighted and unhelpful. Back in 2005 I tried to contact every provincial FEAT and Autism Society organization to get their approval for the wording of a joint text that we hoped to have an MP read out at a press conference about the need for federal action. To my surprise, the person I spoke with from the Manitoba organization stated to me that they were quite happy with their relations with the provincial government and what they were getting in terms of services and they did not want to rock the boat. The individual also told me that there was now "evidence" to support RDI or some other treatment as sound and effective treatment. I honestly felt I was speaking to someone from another planet who was truly "provincial" in her horizons and did not see the "big picture" at all.
____________________________

Sunday, July 27, 2008
THE SUNDAY HERALD
FRONT, Page: A1

Surgeon heads West with family

Doctor says "inadequate resources' for his autistic child reason for move

Chris Lambie Staff Reporter

A reconstructive plastic surgeon is leaving Nova Scotia because he can't get adequate treatment for his autistic child.

Dr. Leif Sigurdson took the unusual step of placing an ad in Saturday's Chronicle Herald explaining his departure.

"I am leaving Nova Scotia due to inadequate resources and services for children with autism spectrum disorder in this province," Dr. Sigurdson wrote.

"I sincerely regret the inconvenience this will pose to the 1,117 patients on my waiting list."

Dr. Sigurdson, who could not be reached for comment, says in his ad that he made arrangements to transfer referrals to the remaining three plastic surgeons at the QE II Health Sciences Centre.

Dr. Sigurdson specializes in breast reconstruction, hand surgery, burns, craniofacial trauma and microsurgery.

"He's a talented surgeon," said his neighbour, Bruce Roald. "I know a lot of people who have done reconstruction from him. It's a real shame that we're going to lose his capabilities here."

Dr. Sigurdson has a young son with autism, Mr. Roald said.

"The son is responding well to treatment, but the program in Nova Scotia only allows 12 hours a week and the child needs much more than that," said the neighbour.

"If he goes to Winnipeg, which is where he's going, he'll get 30 hours (a week)."

The surgeon's son is around three years old, Mr. Roald said.

"He's just at the age where it could make a big difference and I think he's concerned about that, and rightfully so."

Dr. Sigurdson's wife recently completed her studies in radiology, Mr. Roald said. "She's also a medical loss to us."

Mr. Roald said he's "absolutely certain" his neighbours would have stayed in this province if they could have found adequate care for their son.

"She is a native Nova Scotian and he was clearly trying to build a career and a life here."

Health Minister Chris d'Entremont said "we don't want to lose any surgeon for any reason," but he's sure the Capital district health authority will do its best to fill the vacancy created by Dr. Sigurdson's departure.

Services for children with autism have been growing "leaps and bounds" in Nova Scotia since starting three years ago, the minister said.

"Do we have enough services yet? No. But ultimately I think that the acute care system takes an awful lot of money to run and it doesn't leave us a lot of money left over for autism. So I think we're doing pretty well. We need to do a lot more."

The province will spend about $4 million this year on autism treatment, he said. "Ultimately, we do want to add more dollars as years go by."

The province's autism program doesn't cover all children, only those between the ages of two and five, he said. "Children get assessed. Some make it into the program and some don't."

Spending $4 million "really gets us help for about 75 children," Mr. d'Entremont said.

He doesn't know the full number of children with autism in Nova Scotia who need treatment. But he estimates the province will "ultimately" need to spend between $6 million and $8 million a year on the problem.

"Autism continues to grow every year at alarming rates," Mr. d'Entremont said.

The health minister, who has two children, ages five and nine, can see the bind Dr. Sigurdson is in as a father. "I can't fault him for that kind of decision to move away to get more help, if that's what he feels," Mr. d'Entremont said. "Ultimately, I think the program we've got is a good program. Maybe it's not enough time in his mind, but compared to where we were, we've gone a long way."

Vicki Harvey, executive director of the Autism Society of Nova Scotia, said she "felt very sad to see" Dr. Sigurdson has decided to leave Nova Scotia.

[Jemma Lee]

Regarding the provincial autism centre:

I am less concerned about the $20 million being wasted, since bigger amounts get wasted all the time and that's just what governments do. I am more concerned about this project bringing more harm to our children.

For all I know, this may be another attempt to replace individualized funding. I would much rather see families continue to get paid partially to run proper ABA programs, than to be forced to place their children into the hands of government groupies.

It is also possible that this autism centre is the autism school that some government groupies have been trying to open. I worry about this becoming a replacement for inclusive education.

I have not seen the list of board members, but I can give you a few names (of extremely dishonest people) and bet you a million dollars that they are involved.

Jemma

[J.Graham]

Thanks Dave,

Who is this board 'comprised of community members' or is this still in the initial electorial phase?

My concerns with this is there are at least 10,000 parents in BC with kids on the spectrum who all have a voice as to what they would like this money spent on.
Not all have a computer or are on internet boards…
It's not like the Premier does not have our contact info to send us a questionaire or even a vote for who would be responsible for the process of development… they send us a cheque every 3 months – our address is on there.

I am very concerned about the many voices not being heard and I'm sure they are too…

Thanks for the info,

Jen

[Dave Collyer]

Hi,

I was invited to attend but could not.

I don't think it was an exclusive ("private") meeting as it appears to me that a wide cross section of people were invited to participate in this initial formative meeting.

It is my understanding that the Provincial Government is prepared to fund the development of the physical plant (the buildings) and that a board comprised of community members has been struck – this "board" would be responsible for program development and that the process of development would draw upon input from stake holders. It seems that they are in the initial planning phase… and that input is being sought after…

D.

[J.Graham]

Well… my questions would be… why was it private and what was the criteria for being invited???

Jen

Does anyone know what the heck this is about?

—–Original Message—–
From: Dawn Steele [mailto:dawns@telus.net]
Sent: Friday, July 25, 2008 3:28 PM
To: Moms on the Move
Subject: Survey re $20 million in new Provincial Autism Funding

PLEASE COMPLETE THIS QUICK SURVEY & PASS IT ON TO OTHERS IN YOUR NETWORKS

We were invited to a private meeting held in Vancouver July 24 to hear about plans to build a new provincial autism centre in the Lower Mainland with $20 million in provincial funding promised by Premier Gordon Campbell. Varying views and questions were noted about the proposal under development. We are seeking community feedback so that we can offer advice on the best possible use of these public funds.

Please assist us by taking a moment to complete the brief Web survey at the following link:

http://www.surveymonkey.com/s.aspx?sm=QzBrorcLvmzRTARYewTyIw_3d_3d

[Jemma Lee]

Does anyone know what the heck this is about?

—–Original Message—–
From: Dawn Steele [mailto:dawns@telus.net]
Sent: Friday, July 25, 2008 3:28 PM
To: Moms on the Move
Subject: Survey re $20 million in new Provincial Autism Funding

PLEASE COMPLETE THIS QUICK SURVEY & PASS IT ON TO OTHERS IN YOUR NETWORKS

We were invited to a private meeting held in Vancouver July 24 to hear about plans to build a new provincial autism centre in the Lower Mainland with $20 million in provincial funding promised by Premier Gordon Campbell. Varying views and questions were noted about the proposal under development. We are seeking community feedback so that we can offer advice on the best possible use of these public funds.

Please assist us by taking a moment to complete the brief Web survey at the following link:

http://www.surveymonkey.com/s.aspx?sm=QzBrorcLvmzRTARYewTyIw_3d_3d

*****

[Andrew Kavchak]

Hi Folks,

Well, the hypocrisy of politicians is occasionally so blantant it really makes your stomach turn. As Jonathan Howard runs across Canada to raise "autism awareness", some politicians are trying to jump on the bandwagon as freeriders and get some publicity out of it and pretend their support for the cause.

At his autism blog, fellow New Brunswick parent Harold Doherty has a nice summary of the recent two-faced actions of Colin Carrie, MP. See http://autisminnb.blogspot.com/

Colin Carrie is the Conservative MP from around Oshawa, just East of Toronto. He is another member of the Conservative caucus (beside Mike Lake of Edmonton) who has a son on the spectrum.

In the past Mr. Carrie attended our rallies on the Hill when he was in opposition. He even participated in a press conference! When he became some sort of junior Cabinet Minister or Parliamentary Secretary after the last election both Laurel Gibbons and myself met with him in his offices and pleaded for him to do something. He appeared sympathetic, certainly much more sympathetic than Mike Lake who actually gave us back some pages of the signed autism treatment in Medicare petition and told us he would not table it.

Well, as we left his office Mr. Carrie asked us to send him more information and specifics on what we wanted him to do. We had already told him what we needed and what we wanted him to do but he seemed to have no idea on how to proceed. Nonetheless I subsequently sent him some more information… and…then nothing. Never heard from or about him at all. To my knowledge he has done absolutely NOTHING to help promote the creation of a real and meaningful National Autism Strategy, even though he is a member of the governing party and has a child on the spectrum.

The fact that he voted against Shawn Murphy's Bill to amend the Canada Health Act to include autism treatment in Medicare, just as Mike Lake did, just goes to show how politicians care more for their own careers and pensions than doing what's right for the most vulnerable citizens of our country, including members of his own family. Although Mike Lake issued an idiotic two-page letter attempting to explain why he voted against it (you don't think he would tell the truth do you?) which FEAT of BC refuted in an annotated version (scroll down this board to see the link sometime in early 2007), Colin Carrie did not even bother to feel any need to justify his actions with a similar letter to the public.

But when Jonathan Howard ran through town, there was Colin Carrie having his picture taken with Mr. Howard. If this keeps up I might start a business selling barf bags on Parliament Hill for all those of us who simply cannot stand the hypocrisy anymore.

[Author]

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