[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

[Jenn Ralph]

Everyone – get the Saturday Vancouver Sun and read page G3, Michael Campbell's article on mis-managed government spending. Then write some letters to the editor equating this to the MCFD's waste of taxpayer dollars by not providing the right treatment for autistic children. (eg. the Ontario audit – gov't agencies spent $126/hour on useless therapy vs. parents spending $20/hour of proper ABA). Notice the gov't in media keeps saying "we have increased the budget by tenfold", and "we spend over $30 million on treatement for autistic children presently". Both of these quotes would lead the average Joe on the street to think, gee, I guess they are already funding the treatment…. Let's inform the taxpayers of this province that most of their $30M is being mismanaged and wasted, and to hold our gov't accountable. Below is the article in case you don't have the paper, I have re-typed it myself so pardon any errors:

"Misdirected spending is a bad way to say we care"
Michael Campbell, page G3, Vancouver Sun, Nov 27.

Three years ago, former auditor-general Denis Desautels stated that Canadians have a tendency to justify programs more by the money we spend than by the results we get. That's why so many millions of Canadians couldn't care less that the gun registry is a colossal waste of money, or that billions get wasted in health care every year.
Spending money is all about saying we care. We care about personal safety. We care about health. We care about the jobs at Bombardier. It's like we're all trapped in a Hallmark Card moment.
The trouble is that "caring" doesn't solve anything – only taking action does. This week, Sheila Fraser reported that with Canada's most profound failure, the Department of Native and Northern Affairs, we're caring so much that we spend about 40 percent more per elementary and secondary schooling on native students than on non-native ones.
True to form, we know very little about how the money is spent. The amount of funding isn't even linked to the number of students involved. We have no idea if the money is being spent effectively.
This would be just another story of mismanagement and lack of accountability to be filed beside regional development grants and advertising contracts, were it not for the fact that the results are so tragic.
In 2000, the auditor-general noted that aboriginal youth were failling far behind their non-native counterparts in terms of levels of high school graduation. In spite of spending more than $4 billion since then, nothing has changed. As Sheila Fraser sums up, "Four years have gone by since our last audit and things have not gotten any better. In fact, they have gotten slightly worse, and something needs to be done to address this."
Currently, the graduation rate among aboriginals is about 30 percent lower than the non-native population. The auditors calculate it will now take 28 years before first nations reach the same graduation leveles for people over 15 years old as for Canada as a whole.
Is this the sort of Canadian value that the elite love to lecture the rest of us about? We've helped produce a permanent, under-educated underclass with little hope or opportunity of bettering their lives.
This isn't about spending enough money. As is the case with many other government programs, we spend more than enough money but the results are abysmal. how many times have we read in the last five years about government programs enacted without clearly measurable follow-up? The results on aboriginal education are not the exception. Rather, I suspect, they're the rule – but the record shows that most Canadians don't care.
It's part of being a nation of posers where the pretense of caring for natives is far more important thatn the substance of doing the job. While the audior-general's report did mention some success, including the first nations education steering committee that represents aboriginals in B.C. on educational matters, the overall result should be unacceptable.
In reading the auditor-general's report I found myself wondering how anyone can be surprised. The problems are consistent, as is the lack of process. There are systemic problems with how government operates, but what is clear from the auditor-general's report is that we don't have the appetite to address the problems.

[Avery Raskin]

Hi gang:

Anyone who missed the Province yesterday can look at:

http://homepage.mac.com/araskin/

Click on the Downloads chest at the bottom of the page to go to
the files page. I have posted both Krieger's cartoon and Michael
Smyth's column. The photos from Andrew in Ottawa and recent
CKNW broadcasts are also still up.

Avery

[Justin Himmelright]

Who out there is in Chuck Cadman's riding and getting signatures? Let me know

[Justin Himmelright]

Great idea from parent

Local city council meetings are televised — they have open delegations,
and usually there are reporters present at council meetings. Have people organize to go to a council meeting, explain the case, explain the petition, and ask for council's endorsement on the spot. Just an idea, could generate press and more signatures. The same could be done at school board meetings,though they are not usually televised. Help us help our kids is the message — these are the community's children and the school district's children. Make every locally elected official take ownership of this issue.

[Super Dad]

Take a look at Michael Smyth's article in the Vancouver Province on Friday, titled "Liberals changed tune on autism funding", subtitled "PROMISES: About-face on funding is worst example of Liberal flip-flops."

He included NDP-era quotes from Gordon Campbell, Rich Coleman, Colin Hansen and Christy Clark. He ended the article with this punch line:

"That's what you call winning ugly."

Tony (Leo's Dad)

[Barbara Rodrigues]

Just another thought – on the blurb we are going to be handing out – be sure to put the FEAT website – and the online petition maybe??

Barbara

[Barbara Rodrigues]

Hi Guys:

Just wanted to mention that our mall here in Penticton allows you to get a table all day (for free) – I did this back in 1998 when I had a petition drive for Jeremy. I am not sure if they still do it but it might be worth a try in areas we really want to get the signatures up. I am going to try it here also will let you know what they say. Just a thought.

I have to say – I am so inspired by everyone.

Barbara

[Debbie]

good morning everyone,,
tis the season,just a reminder christmas parties r coming up everywhere,,last night we were at my husbands christmas party dinner for work and i got over 40 signatures at this event, everyone there was well aware of what has happened to us in the news and were more than willing to help our children, a few of them took the web address, so they could help out a fellow empolyee,,,,,so please dont forget to hit these crowds of people,,,,,,oh yeah and this morn. i am off to the superstore in langley,to stand and say my speech over and over again, to fill up my pages that i have downloaded,to help our kids,,, thanx, debbie,,,dj's mom

[Monika Lange]

Hi Justin,
How about this quote, followed by the David Suzuki quote (on FEAT website in Brief to MPs – something to the effect of "it used to be considered a life sentence, but now we know it can be lifted"). Credit to FEAT for most of the following quote too (I can't believe my plagiarism is a reoccurring theme; how very very embarrassing!):

"A highly effective treatment exists to treat autism. This treatment was pioneered and developed by Dr. Ivar Lovaas at the University of California. Lovaas treatment, officially termed “Applied Behavioural Analysis Treatment’ (or ABA) has been scientifically proven effective in treating young children with autism. 47% of children who begin this treatment before the age of four lose their diagnosis. Another 40 percent will pass their grades in school and function independently as adults. In other words, an 87% success rate. It should be noted at this point that ABA is the ONLY scientifically proven effective treatment. The current autism industry in BC is neither scientifically proven nor effective – it carries a rehabilitation success rate of about 2%, which is the same success rate experienced spontaneously without ANY intervention."

[Theresa Jouan]

Justin-

May not be able to get to it until next Tuesday (if this is still an appropriate amount of time to be waiting) but will have it up then!

Ms T.

[Author]

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