[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

[Andrew Kavchak]

Hi Folks,

Well, the language and corresponding ideas appear to be catching on. A few years ago while protesting on Parliament Hill I bumped into Peter Kormos, one of the well-known maverick NDP MPPs in Ontario. I don't know what he was doing around Parliament Hill that day, but I spotted him and spoke to him right away about the need for autism treatment to be covered by Medicare, etc. He sounded sympathetic and of course referred to Shelley Martel, the then NDP critic with the autism file.

However, now it appears that one of his constituents has a problem….and what is his quote/soundbite? "Treatment should be available under OHIP"! Beautiful! For your info, OHIP is the Ontario Hospital Insurance Plan or public health insurance program, or MEDICARE in Ontario. Finally, a provincial politician just said it. I hope he tells his colleagues in the legislature that saying those words did not hurt, (and that there is no reason to be fearful)and that they should all start repeating it over and over and then take the next step and act on it.
_____________________________________

Autistic children face therapy delay

Funding has more than tripled under Liberals, but expert says it has not kept up with demand

Aug 08, 2008
The Toronto Star
Rob Ferguson
Queen's Park Bureau

As the mother of an autistic son, Stacy Hayward of Welland was looking forward to 4-year-old Branden starting intensive treatment in September.

Then Hayward got a letter late last month from a local treatment centre saying the boy's intensive behavioural intervention (IBI) therapy will be delayed because of a cash crunch.

She came to Queen's Park yesterday looking for an explanation.

"The government is failing our children," said the mother of three, noting the IBI treatments that cost about $50,000 a year "are known to really, really help these children."

The postponements – happening in several parts of Ontario this summer – prove the need for covering IBI therapy under provincial health insurance, the New Democrats say.

"Treatment should be available under OHIP… so treatment won't be a lottery for kids who need it," New Democrat MPP Peter Kormos (Welland) told a news conference yesterday as an energetic Branden roamed the media studio.

"It's a roll of the dice."

The Ministry of Children and Youth Services acknowledged some social agencies giving IBI treatment through provincial funding – including Hamilton-Niagara and Northern Ontario – are facing deficits, but officials at Queen's Park aren't sure why.

"We don't have a full picture yet," said Kevin Spafford, a spokesperson for Children and Youth Services Minister Deb Matthews, who has ordered a report on the issue.

"We're just looking to understand why even though we've increased funding they're still having cost issues," Spafford said.

He noted the Liberals have increased autism funding to $150 million this year from $44 million when they were elected in 2003.

About 1,400 children now get IBI therapy annually, up from 500 five years ago. Another 1,100 remain on the waiting list.

At least one agency says the problem stems from provincial funding not keeping pace with the increasing number of children getting the expensive IBI treatments.

In the Hamilton-Niagara area that serves the Hayward family in Welland, the number of children getting IBI therapy has almost doubled in two years, to 116 this year from 62.

"The revenue for IBI also increased, but not proportionately," said Melissa Macdonald, spokesperson for the Hamilton Health Sciences Centre, noting the funding has risen at a much slower rate of about 28 per cent in the same period to $8.89 million this year.

That's why the Hamilton centre – which runs the Hamilton-Niagara regional autism intervention program now facing a $1.8 million deficit – has decided "different models of care" will be needed to treat its allotted 116 children this year.

"That means kids in this catchment area will wait longer," Macdonald said in an email interview.

For Hayward, that means digging deeper into her own pockets to pay for IBI treatment on a private basis.

"If we have to mortgage our house … that's the position we're in," she said. "We're gonna do whatever we have to do."

IBI treatment has been widely hailed for making communications breakthroughs with autistic children. Therapists reinforce desired behaviours and discourage inappropriate ones in sessions that can take up to 20 hours a week or more.

[Khiat Kurniawan]

Thanks, Jemma!

Everyone, please forward advice and suggestion to my email indo.manna@gmail.com.

Thanks.

[Jemma Lee]

Hi Khiat,

I assume it's Supported Child Development you're talking about. You can look up the Burnaby boss in here:

http://www.scdp.bc.ca/SCD%20Program%20Locations.htm

Please read Sabrina's advice at the top of our Government Topics page. Take detailed minutes during every meeting or phone call, and send a copy to them.

You may want to leave your email address, in case anyone has advice that they want to send in private.

Jemma

[Dave Collyer]

Hi folks,

Quick question regarding the "Invoice Payment" option… Once you submit your "Request to Pay" (RTP) form how long is it currently taking for your Service Provider (ie Behavior Consultant)to be paid? A few years ago it was taking a few months (two or three months at one point in time) but in recent conversation with the Autism Funding Branch they indicated that RTPs are being processed and that Service Providers are being paid within 14-30 days…. True?

[Khiat Kurniawan]

WOW, REALLY! I live in Burnaby.

Thanks,
Khiat

[Jemma Lee]

Hi Khiat,

Writing to your MLA may help them get more funding, which will help the social worker get a higher salary. I am not sure it will help your son.

You should be writing to the social worker's boss.

Which city are you in?

Jemma

[Khiat Kurniawan]

FUNDING FOR ONE-ON-ONE SUPPORT IN GROUP DAYCARE
***********************************************

My 3 year old son just got enrolled in group daycare last month. We are now told that the daycare will need to hire extra staff to attend to my son. If we don't approve this request, our son has to leave the daycare by the end of the month.

We told the daycare that we have applied for one-on-one support funding since February but our Social worker told us that the funding is not available yet. The Social worker told us to write to MLA regarding our situation with the hope that they will expedite the funding.

Has anyone gone through this experience before? Is writing to MLA can speed up the funding process? Please let me know if you have any suggestions.

Thanks.

[Jemma Lee]

Hi Stella,

Thanks for posting the link. I was quite amused by the news article.

I finally realize what we've been missing. All it takes is a building to make our province "clearly a national if not international leader in autism services, autism research, autism intervention." All these years, we should have been designing a building instead of going to court with the provincial government.

I guess I am not the type of person to come up with the "vision" of a beautiful new building, something tangible that the politicians can show off. I am sure that once they enter the building, they will suddenly realize what is adequate and proven treatment. I can then drop off my kid every morning and stop worrying. I've been way too focussed on boring ideas like adequate individualized funding.

Mr. Cocchia said, "now if somebody else had a proposal and they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government." Now there's an idea. Let's present something to the government! I'm sure our politicians are very reasonable people. May be we can try something like "Medicare for autism"?

Jemma

*****

Autism centre one step closer

Couple asked to put together proposal for long-held vision

Catherine Rolfsen
Vancouver Sun

Friday, August 01, 2008

VANCOUVER – A power couple is crafting a pitch to the provincial government for an autism centre to help families such as theirs that are dealing with the disorder.

Sergio Cocchia and Wendy Lisogar-Cocchia – who own Vancouver's Century Plaza Hotel and Spa, and have a 13-year-old son with autism – envision an autism research and support centre that could cost up to $34 million to build.

"What we hope is that, when you get this diagnosis, there's a place that you can go, where you could access all of the material, the professionals, the treatment plans, and you could prepare yourself for the challenge that's ahead of you," said Sergio Cocchia.

For years, the Cocchias have been speaking with Premier Gordon Campbell about the possibility of a centre.

Their dream started to materialize in the 2008 throne speech, when the province committed to developing a facility to "provide a residential environment for children with autism and create a national hub for research and a centre for parental supports."

After the speech, Campbell told The Vancouver Sun he asked the Cocchias to put together a proposal and a business plan.

Minister of Children and Family Development Tom Christensen said Thursday the government has "talked notionally about a commitment of up to $20 million but we really don't know yet what it will take."

Christensen said the Cocchias have been asked to consult with autism experts and families about what the centre should look like.

Last week, the Cocchias invited experts and stakeholders to have their say. Cocchia said a website is also planned to allow everyone to weigh in. He said early consultation suggests the centre might be most useful in a location outside Metro Vancouver.

Preliminary estimates peg the cost of building the centre at $34 million, Cocchia said, meaning "aggressive fundraising" will be needed.

Not everyone is keen on the Cocchias' vision. Some stakeholders said that if government money is available, it should go toward programs and services rather than a building.

But Daniel Weeks, chair of Simon Fraser University's department of psychology, called the proposed centre "an incredibly exciting development."

"If this all works out as I understand it will, I think B.C. will be clearly a national if not international leader in autism services, autism research, autism intervention," he said.

Weeks said the facility could help attract a "world-class" candidate to fill the newly formed position of national chair in autism research and intervention at SFU.

Clair Schuman, executive director of Autism Community Training, said a preliminary consultation with her advisory council and other members of the autism community suggested the idea of a centre "had promise."

But University of B.C. autism expert Pat Mirenda questioned why there was no consultation with the autism community before the couple was asked to develop the proposal.

And although she believes the Cocchias are well-intentioned, she's not convinced a centre is what's needed.

"If we have $20 million, why would we spend it on a building and not just increase services or training?" she asked.

Moms on the Move, a network for families coping with autism and special needs, said an informal survey conducted over the last week revealed misgivings about spending $20 million on a new building instead of programs and services.

Of approximately 300 respondents, nearly two-thirds thought the money should be shared to benefit those with developmental disabilities other than autism.

Michael Lewis, president of the Autism Society of B.C. board and vice president of the Autism Society of Canada, said at this point it's unclear what the purpose of a new centre would be.

He said he hasn't heard much enthusiasm for the idea and emphasized the centre shouldn't replicate existing services.

Cocchia said such criticism is "frustrating."

"We have this vision of a centre. We think it's a good vision. We think that there's a lot of support for it," he said. "Now if somebody else had a proposal [and] they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government."

crolfsen@vancouversun.com

[Stella Li]

Vancouver Sun: Autism Centre One Step Closer

http://www.canada.com/vancouversun/news/story.html?id=e3233561-59e0-4f56-934a-549d6320ad33

[Andrew Kavchak]

Check this out…especially that few paragraphs about amending the Canada Health Act to get Medicare for Autism NOW!
______________________________
Wednesday, July 30, 2008
CANADA AM

Manitoba's autism treatment attract doctor parents

RINALDO: A Halifax family is packing up and moving to Winnipeg in order, they say, to get the treatment they need for their autistic child. Three-year-old Eric was diagnosed with autism a year ago, but Eric's parents say they haven't been able to get access to the kind of support and treatment that their home province would offer. So, the family is redirecting their careers, leaving home for Winnipeg.

Joining me now from Winnipeg is Eric's mother, Leanne Van Amstel; and from Halifax, Eric's father, Leif.

Good morning to you both.

DR. LEANNE VAN AMSTEL: Good morning.

DR. LEIF SIGURDSON: Good morning.

RINALDO: Now, Eric didn't make the lottery. That's what happens in Nova Scotia, you throw your name into a hat. He didn't make the lottery.

So, this treatment is very expensive, I know. How are you handling all of that? Or how were you before the move to Winnipeg?

DR. LEANNE VAN AMSTEL: Well, basically, we knew that Eric needed intervention and he wasn't going to get it through the funded program in Nova Scotia. And our main goal was to get him the intervention that he needs.

So, we decided to pursue that privately even before his diagnosis, because we knew what we were dealing with.

So, we had a psychologist on board, a speech language pathologist, a couple of behavioural therapists. And we were essentially running that completely on our own, to try to get him the level of intervention that he needed.

RINALDO: And early intervention is key, is it not, Leif?

DR. LEIF SIGURDSON: Yeah, it really is. There's a lot of good evidence out there that really shows that if you get at these kids quite early on in their development that you can make a significant difference in their eventual outcome.

RINALDO: Why choose Manitoba? Alberta, I'm told, has a wonderful program as well.

DR. LEIF SIGURDSON: Well, you know, I'm in the fortunate position really that there's job openings all across Canada with regards to reconstructive surgery.

So, we looked at all the provinces. And Alberta does have a good program, but it's privately delivered. The government will give you a certain amount of funding to go out and find providers — which is sort of the situation we were in here as well, in terms of trying to put together a program ourselves.

And the Manitoba program is publicly funded and it was very well organized and had all the pieces together that we were looking for.

RINALDO: Right. I think that the message here is that this does not fall under federal jurisdiction. Each province determines the treatment course and basically how many hours and how much funding they're going to provide.

You touched on this before, and I want to talk to Leif about this. You actually put an ad in the newspaper because I know the two of you are giving up pretty lucrative jobs although, as you did say, you have one to go to.

Show me this newspaper ad that you've put out.

DR. LEIF SIGURDSON: I don't know if you can see it that well. But that was in the paper on Saturday.

RINALDO: And what does it say exactly?

DR. LEANNE VAN AMSTEL: Well, I just was announcing the closure of my practice. And I put in that I'm leaving Nova Scotia "due to inadequate resources and services for children with autism spectrum disorder in this province. I sincerely regret the inconvenience this will pose to the 1,117 patients on my waiting list."

So, it's actually a requirement of the College that I announce the closure of my practice.

RINALDO: Right.

DR. LEIF SIGURDSON: But I've been in practice here for eight years. And I've treated a lot of patients. And I wanted my patients to know that I was not leaving for a better lifestyle or more money.

And I also wanted to draw attention to the fact that there's a significant number of children here in Nova Scotia that get little or no treatment for autism spectrum disorder as a result of the lottery and underfunding of the program.

RINALDO: Leanne, let me put this question to you. There's been some discussion about putting autism under the Canada Health Act which would make it, I suppose, universal across the country and require the provinces to give equal access.

What do you think of that idea? The federal government is not that keen on it because they think it should be up the provinces to administer it. The funding.

DR. LEANNE VAN AMSTEL: I think it would definitely be a move in the right direction. If you look at the numbers, one in 150 children born today will be diagnosed with autism. And the rate in boys is on the order of one in 94. So, it's a significant problem. It's everywhere really, if you look around.

And in the health-care system that we have in Canada, the principles are that it's supposed to be universal and is supposed to be accessible for everybody who needs it. And, clearly, in the case of autism that isn't the case. And there is a significant variation from province to province.

So, I think making a federal issue, putting it under the Canada Health Act, would be a move in the right direction. I think that's the way it should go.

RINALDO: Okay. Thank you both for joining us this morning and sharing your story with us. And good luck in Winnipeg.

DR. LEANNE VAN AMSTEL: Thank you.

DR. LEIF SIGURDSON: Thank you.

Dr. Leanne Van Amstel, Mother of Autistic Child Dr. Leif Sigurdson, Father of Autistic Child

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