[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]

Toronto Sun,
Wed. May 14, 2008.

Hunger striker won't waver

Antonella Artuso, Queen's Park Bureau Chief

A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his own 15-year-old son, and all autistic children, get the treatment they need to live a fuller life.

Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his whole family onto the front lawn of Queen's Park if necessary to secure intensive behavioural intervention (IBI) for his son Simon.

"Children are our riches, they're our gold," said Marinoiu, a father of three.

NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially funded autism services, despite public assurances by Dalton McGuinty's government that more is being done.

"Stephan really is the face of parental anguish and sheer frustration here in Ontario," Horwath said.

Bruce McIntosh of the Ontario Autism Coalition said parents are often under enormous financial pressure to provide IBI out of pocket — $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program — and many can't afford it.

Children and Youth Services Minister Deb Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.

[Super Dad]

This has nothing to do with autism, but I just find it interesting to hear a politician refer to a funding decision as a "moral decision." Throughout out struggles we have never seen a government make morality a part of their formula.

***

Group calls for national policy to cover drugs for rare diseases

http://www.cbc.ca/health/story/2008/05/13/rare-diseasedrugs.html

Tony

[Super Dad]

Here is yesterday's news article from MedBroadcast.

Kathleen Wynne says, "my heart goes out to people who have these very special and severe needs." Minister Wynne you just made me vomit. I don't want your cold dark hypocritical excuse of a human heart. I want my tax dollars going toward helping our kids!

*****

http://www.medbroadcast.com/channel_health_news_details.asp?news_id=15325

Families of autistic kids demanding Ont. eliminate wait list for treatment

May. 12, 2008

Provided by: The Canadian Press
Written by: Maria Babbage, THE CANADIAN PRESS

TORONTO – The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.

Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.

"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job a few years ago to help care for his son.

"It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him anymore."

Marinoiu will be joined by other parents Tuesday to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children who are still waiting to receive intensive behavioural intervention therapy, or IBI.

The group will also be asking the government to provide IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services.

But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.

"My heart goes out to people who have these very special and severe needs," she said.

"We will continue to work with the family to provide the resources in the school that this student needs."

Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.

Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.

The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews. The list of children waiting to be assessed to see if they are eligible to receive IBI has also dropped to 363 from 1,027 four years ago.

Marinoiu said he's been unable to obtain services to help care for his son, who was dropped from the wait list after he surpassed the cut-off age of six.

The Liberals eliminated that cut-off threshold in 2005, but say a dramatic increase in the number of children with autism has put additional pressure on the system, causing wait lists to grow.

The number of children waiting for IBI has jumped to 1,148 at the end of March from 89 in early 2004. Critics point to the rising numbers as proof the province isn't serious about giving autistic children the help they need.

Marinoiu's hunger strike is just one indication of the distress parents are feeling, said Conservative critic Elizabeth Witmer.

"It's another broken promise," she said. "The premier promised one thing. It's simply not happening."

The long waits have forced many parents to drain their savings and go into debt to pay for the therapy, said NDP critic Andrea Horwath.

"Here we are, years down the road, and we still have the same situation," she said.

"Parents are still going bankrupt. Parents are still extremely frustrated with the lack of available services. Parents still are fearful of trying to transition their kids into school, knowing darn well that the services aren't available in the school either."

Without help, Marinoiu said his family may be forced to put his son in an institution – something he refuses to do.

"I don't have a life anymore and I've got nothing to lose," he said. "So I'm going to stay here until the government is going to get it."

A number of families of autistic children are still waiting to see if they will be able sue the Ontario government and seven school boards for damages over funding for specialized treatment.

The group argues the province discriminates against autistic children because they can't always get both their therapy and education within the public school setting.

The Ontario Court of Appeal, which heard the case in February, is expected to release its decision this summer.

An estimated 50,000 children and 150,000 adults in Canada have autism.

[Andrew Kavchak]

Hi Folks,

I don't know about you, but I really enjoyed watching the CTV W5 program this past Saturday. Wow! Are we getting some coverage or what?!?! Congrats to Jean Lewis, Robert Shalka, and others for a job well done!

However, such complicated matters are so difficult to explain in a few moments and reports are often missing something. When facts don't fit the standard journalist formula, then things get omitted, etc.

Here are some thoughts…

1) Regrettably, the "Amend the Canada Health Act v. Don't Amend the Canada Health Act" is not my favourite characterization of the options at the disposal of the federal government. As Mike Lake did, they simply say they can't force something on the provinces and leave it at that.

If there was any leadership in Ottawa in the Health portfolio, a conference would called by the federal minister of health with his provincial counterparts to negotiate a deal as part of a National Autism Strategy. The feds should put some money on the table from their 11 years of consecutive budget surplusses, and negotiate the inclusion of autism treatment in Medicare with the legislative action of amending the CHA as the sealer of the deal. Whevever the negotiations hit a stumbling block they could threaten to unilaterally amend the CHA and withhold transfer payments to any province that does not comply. This is typical of Constitutional conferences and through the process we typically get some degree of "buy in" or support from the provinces…which would be beneficial if it would ever happen. This funding formula approach is not unprecedented in health accord negotiations and is what the Senate Committee recommended.

For Mike Lake (an MP with an autistic son!) to brush the entire matter off as one exclusively of provincial jurisdiction for which they should exclusively be held accountable is a cop-out and abdication of leadership. When the provinces are acting in an irresponsible and negligent manner, the feds have to wake up and display some initiative. The refusal to do so for autism, while going ahead with a $50 million National Cancer Strategy, is inconsistent, and you can pick your explanation of why they prefer to be hypocrites.

It is regrettable that the CTV journalist did not pursue a line of questioning with Mike Lake regarding why the feds have not considered pursuing a Canadian process to solve a national problem and "make a deal!" like they do with everything else. It would have been harder for him to squirm his way out of that one and would certainly expose the government for what it is.

2) Speaking of Mike Lake, I could not believe the clip of his using his son at the press conference on World Autism Day to actually state that he thought it was a good thing that families with autistic children get out there and be known to the public and the "political decision-makers". Huh? And what is he? And how has he helped? Besides providing a disgraceful letter to his caucus colleagues to justify the vote against Shawn Murphy's private bill last year I mean. This is now the second time I have seen him use his son at a press conference of this nature. I personally find it revolting for him to use his son in these photo-ops while doing nothing (to my knowledge) to actually help the autism community. No shame at all.

3) I was surprised that there was no mention of the mammoth efforts by the US federal government in the Combating Autism Act and billion dollar budgets, etc.

4) The clip with the Ontario Minister was a classic in demonstrating political non-responsiveness. The wait list grows from 79 to 700 to 1,200 over the span of a few years. What does the Minister say? That the government will continue to work hard. In other words, more of the same. That's what I was afraid of! Anyone willing to guess as to when the waiting list will reach 1,500 or 2,000?

[Super Dad]

Here is a short news article from MedBroadcast…

*****
http://www.medbroadcast.com/channel_health_news_details.asp?news_id=15309

Father of autistic son demanding elimination of wait list for treatment

May. 12, 2008

Provided by: The Canadian Press
Written by: THE CANADIAN PRESS

TORONTO – A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.

Stefan Marinoiu, 49, will call on the government Tuesday to move more quickly to provide treatment for children with autism, including his teenage son.

He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.

Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.

Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.

She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.

[Debra Antifaev]

Thanks for responding, guys. I am always worried when I make a post that could be considered argumentative. I had to go to several professionals to receive the diagnosis of autism. I also had to pay for the "multi-disciplinary assessment" to secure the dismal bit of funding. I want to see an assessment from a recognised, reputable autism professional and I would like to challenge parents to write to their MP's to "out" this travesty. Why would this person's opinion be included in a decision that affects parents and "real" autistic children.
I would like to make the same challenge to Michelle Dawson that I have made to every person who has the gall to criticize ABA or any of the parents I know are struggling with children with autism…..
Take care of my son for ONE month.
Just one month.
I will pop in, unannounced and often, just to make sure you have not been driven by frustration to abuse him or pull your own hair out.
Only AFTER you have walked that one mile in my shoes do you get to tell me that we should not be looking for a cure for autism.
My son will NEVER live alone.
My son will NEVER be able to lobby the Government.
My son will NEVER know how to write a memo.
I will ALWAYS have to plan for his care.
His Autism affects me, my husband AND my four other children and if it affects us, then WE have a say.
If you are not prepared to care for a child that has been severely impaired by this condition then leave me alone and DO NOT speak for my child.
AAAAAARRRGG……sorry guys, but I do get frustrated……

[Jemma Lee]

The fact that the government has invited Michelle Dawson to the symposium really adds insult to injury. I can write a book on people like her, but so much has already been written by others. Some excerpts I have previously posted here seem to be removed, but here are some new ones from an article by Thomas A. McKean:

***
It seems that today anyone can make a claim they have autism and it will be believed. These people will get a slot at a conference and they will get up there and say things that are dangerous to kids with autism and their families, and the parents will take notes and eat it up.

We have young people who have no documentation of a diagnosis being accepted as autistic and who are accepted to speak at these conferences to speak on behalf of those who cannot speak for themselves.

What they are saying is that ABA is wrong, they are saying that seeking a cure is wrong, and they are saying that we need to allow the children to be themselves and to respect them for who they are.

***
More than one speaker currently on the circuit is “self diagnosed.” This is extremely dangerous and they should not be allowed to speak until they have documentation proving a valid diagnosis by a reputable doctor.

***
The reason you need to be asking these questions, the reason we need to start cracking down and being harder on speakers is because these people are up there representing the children of the parents who came to hear them speak. There cannot be accurate or valid representation if they have not experienced what a lot of these kids have.

***

[Mike & Jean]

Just a reminder – Watch CTV's W5 tonight at 7:00 p.m. Titled,"Life on the Brink", is a story of how Canadian families, which includes all of us, are dealing with the extraordinary costs of providing treatment for our children with autism. Our national political initiative to have autism treatment covered under Medicare is part of the story. It is the second story in the program, so will begin about 7:30 p.m.

We encourage you to watch the program and to email your comments to W5 at its conclusion. Go to http://www.ctv.ca and click on W5.

The program runs again tomorrow at 1:00 p.m.

[Isaac]

Hello everyone,

I'd like to add some thoughts to Andrew's kind contribution to the forum, regarding the CIHR report.

Andrew states:

"While Clement stated that 'research is the backbone for all truly effective policies and therapies' and that 'the more we share knowledge, the more we gain … ,' he completely ignored the fact that research has shown for over 20 years that there is an effective, evidence-based treatment available."

Apparently Minister Clement has also chosen to ignore relevant research presented by an Ontario researcher at Clement's autism symposium. Dr. Nancy Freeman informs that a MAJOR study on the effectiveness of Intensive Behavioural Intervention has already been conducted in Ontario, and the findings are very positive.

The CIHR report includes a summary of the new research:

– "Dr. Nancy Freeman presented research data from a major Ontario study on the effectiveness of the province's Intensive Behavioural Intervention (IBI) program."

– "According to Dr. Freeman, the study found that IBI significantly reduced the severity of autism symptoms …"

– "She also noted that there were significant and sometimes dramatic improvements in cognitive and developmental skills, including self-help skills, social skills, motor skills, and cognitive scores."

– "The results support the effectiveness of IBI, when provided in a large community-based program, she concluded."

(Source: http://www.cihr-irsc.gc.ca/e/36237.html)

"Significantly reduced … autism symptoms" and "significant and sometimes dramatic improvements" both sound like very clear and unambiguous research conclusions to me, and probably to most impartial observers as well, I would think. The implications of the research suggest that for the Province of Ontario, the evidence is largely in regarding what's effective for the treatment of autism. Why the federal government is ignoring this fact and permitting a national autism strategy vacuum to persist is the question to ponder.

Assuming that everyone is working in good faith (i.e., to rule out dithering and obfuscation from the equation) then one could reasonably ask, "exactly how much research does the Health Ministry require to reach their threshold 'for truly effective policies,' so that SOME type of a national autism strategy — with uniform treatment policy guidelines — can be developed?

On a separate, but related note, how does Dr. Nancy Freeman’s research now affect the Supreme Court of Canada? Well, when research on Ontario's autism treatment program shows evidence of "significant and sometimes dramatic" results, for an otherwise intractable disorder, we have nothing less than an invalidation of the factual underpinnings of the Supreme Court's Auton ruling of 2004, wherein the court essentially based its entire ruling (incorrectly, it would now appear, according to Dr. Nancy Freeman’s research) on the central notion that intensive behavioral treatment is "novel" and "emergent." We all knew that was an excruciatingly sloppy decision back then (to be generous). Now we have additional "evidence-based" support for that view. Truth is a stubborn thing — even the Supreme Court can't make it go away.

Isaac

[A Father]

Andrew,

Great post. In my humble opinion, "Clement has to go!" should be the thought on any parents mind who has a child with ASD. It should be something we think every time we look at our children.

I have not voted in over 15 years. I can't even remember the last time I voted. Why? Because I have never trusted a politician to do what they promised. Time and time again they simply make promises and then take my money. I lost interest and hope that these representatives would ever deliver.

Unfortunately, I expect things to continue this way unless people like you and I demand the system to work again. We must demand representatives who stand for what we believe in and whats more important, deliver.

I now live in a constant state of rage over the sham we call government. I look at my kids and feel sick that we have allowed a group of people to run our province/country who have zero interest in helping children. These officials stall, talk nonsense and pretend to be sympathetic. Well, in my world, talk is cheap.

During the next election you can bet I will be there. I will have asked all the parties where they stand on Medicare for Autism and it will be my single issue that will win my vote. Not only will it win my vote but all my friends and relatives will be behind me. So my friends and relatives don't vote anymore that I will effectively command dozens of their votes when I bring them to the polls.

This angry man is coming back to vote and he is bringing his family and friends with him.

If your a politician and you're not for Medicare for Autism, you're soon out of a job.

[Author]

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