[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

[Nancy Walton]

Petition News

I have received confirmation of about 1100 signatures so far (waiting for confirmation on 800 more on the island). So we should be crossing 2000 soon. I'd like to see us reach 10 000. Keep up the good work everyone. I'm sure many of you are collecting signatures this week like I am.

Remember to let me know your number and who you gave it to.

Nancy Walton
wiklo@shaw.ca

[Justin Himmelright]

Tyla, that is a fantastic idea ! All you therapists out there, if you want to help, grab a petition and hit the campus. If you have a campus newspaper, try to get a letter to editor in with directions to the online petition (http://www.petitiononline.com/mod_perl/signed.cgi?andap1) and how to download a hardcopy. To all those out there collecting signatures, try to keep copies. If you can, .pdf them or fax them to Nancy Walton. Nancy will be coming on shortly to post her contact information

[Diane T]

Mid-Island ASBC Community Group
6:30-8:15pm
Thursday, December 2
Room 209 (second floor)
Building 356 (Social Sciences and Education)
Malaspina University-College
Nanaimo

***Parents ONLY Session***

"Holy Cow, they Ruled Against Our Kids!"

On Thursday, December 2, lawyer and Counsel for the Respondents, Birgitta von Krosigk from North Shore Law will be talking about the Supreme Court of Canada's ruling in "The Attorney General of British Columbia et al v. Connor Auton et al" and what that means to past, present and future autism medical treatment funding at home in BC, and across the land.

A limited number of copies of the judgement will be available; we encourage you to bring your own copy of the ruling to follow along.

Judgements are available at:
http://www.lexum.umontreal.ca/csc-scc/cgi-bin/disp.pl/en/rec/html/2004scc078.wpd.html?query=%22auton%22&langue=en&selection=&database=en/jug&method=all&retour=/csc-scc/cgi-bin/srch.pl?language=en~~method=all~~database=en%2Fjug~~query=auton

Coffee and doughnuts will be available.

Please know that this is a ***Parents ONLY Session***.

Please email Diane if you plan to attend, so we can arrange appropriate seating and refreshments. (To find the email address, just touch the name in blue at the top of the post. If you receive this post via email, go to http://www.featbc.org/chat/ to find the post, and then touch the name in blue.)

Hope you can join us.

[David Chan]

hi all,

Just put a notice in my son's school's weekly newsletter,
hopefully we will get a bunch of signatures on the petition that
way.

You are perfectly right Jean to use that quote about "good
poeple doing nothing"

Regardless of whether we have a child with autism or not, we
have a moral obligation to protect these children

Dave,

Mr.P's Dad

[Tyla Frewing]

Hello all,
I just wanted to pass on an idea for any university/college students out there (particularly psych majors). I have requested that my profs allow me to take 2 minutes at the beginning of class to explain the petition and then circulate it during the class. Both profs I have asked have said yes. In one class today I collected 30 signatures, and I will be circulating the petition in another on tomorrow. The second prof has asked that I present "both sides" of the issue for "educational purposes" but has still agreed to let me talk and pass around the petition. So, if you are a student/instructor wondering how you can help – give this a shot!
To all the parents – I am more inspired each day by all of you!
-Tyla Frewing
(ABA Senior Instructor).

[Barbara Rodrigues]

Monika:

Great story! Front page is great also. Lots of great quotes/zingers! I pasted it for anyone who may want to read it also.

Allan Hewitson
Sentinel contributor
The Kitimat single mother of an 11-year-old autistic boy is 'deeply saddened" by the decision of the Supreme Court of Canada that it is up to the BC Government to decide whether or not to pay for costly early treatment for children with autism.
Monika Lange, who has campaigned vigorously for what she described as "medically-necessary" treatment for children with autism, says unequivocally, "the Supreme Court got it wrong."
Lange said the decision was not about treatment for autism, but the power struggle between the courts and legislature on who define what medical treatment must be provided.
"Canada's top court has bowed to pressure from the BC government in its wake it has left children with no recourse," she added.
"What kind of Canada do we live in that members of the most helpless and vulnerable group in society cannot receive scientifically-proven medical treatment," Lange asked.
Attorney General Geoff Plant has welcomed the Supreme Court decision, while extending his sympathy to the parents of autistic children.
Currently the province covers core services which are provided by designated health-care practitioners.
Providers of the autism therapy known as Applied Behavioral Analysis (ABA) do not have the required medical designation and their services need not be funded by the plan, the court said.
A group of BC families had argued ABA was medically necessary and that the decision by the province not to provide the treatment violated equality rights guaranteed under the constitution.
In its decision, the Supreme Court overturned two lower court rulings which it said failed to prove discrimination.
Lange disagrees. "A variety of medically necessary treatments are expensive. I wonder if Attorney-General Plant would volunteer to save the system money if anything were ever to go wrong with his prostate."
While her words were angry, she would continue to direct them at anyone, government official or not, who suggested her son was a second class citizen in terms of health care.
"The top court has set a precedent that any medical treatment is on the cutting block if it will help government serve its own interests," Lange warned.
"The BC government is spending $30-million a years on service providers and programs for autism that are ineffective, obsolete and not scientifically proven," she charged.
"And this is at the direct expense of the one treatment that is scientifically proven to be effective. The government says, sorry, we can't pay for scientifically proven treatment because we are already spending too much to treat autism."
Lange insisted ABA, also known as Lovaas treatment, is an effective intervention treatment. "Fully 87 per cent of those treated become fully independent, functional contributing members of society."
BC families launched their case six years ago, asking the government to pay for Lovaas treatment – it costs about $60,000 per patient annually.
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[Super Dad]

After I voted on the CKNW survey, it told me a bunch of idiots voted against autism treatment. People out there still think "I'm not autistic so let's spend the money on something relevant to me." What they don't know is that any day any one of them can get an invisible disability. As opposed to something high-profile such as cancer or heart disease, he will get something with no public awareness. He will need treatment to reduce the excruciating pain, but oh surprise there is no political pressure for the government to provide any funding. All of a sudden he realizes the importance of minority rights, and when he tries to fight the discrimination, he will see a bunch of idiots vote against his treatment on CKNW.

So go ahead and trash the Charter, because you don't need it today. Let's see what happens tomorrow.

[Jenn Ralph]

Just to add to Barb's post about newspaper media, the following article appeared today in the Toronto Star:

Families of autistic kids deserve help

Canada's provincial governments are celebrating the news that they cannot and will not be forced to pay out hundreds of millions of dollars a year to treat autistic children.

But while the provinces' relief is understandable, they have not been absolved of a serious social responsibility — not one bit. The Supreme Court of Canada merely told them what their legal obligations are, what the letter of the law says must happen.

The judges did not spell out the moral imperative confronting the provinces. And when it comes down to morality, it is difficult not to conclude that more should be done to serve the needs of one of the most vulnerable groups in Canada.

Autism is a rare but debilitating mental condition that usually strikes in early childhood. While autistic children bring joy to their families, they also bring heartache, demanding an overwhelming commitment of time, energy and money. This burden is felt by the general public also. It has been estimated that 90 per cent of autistic children are eventually institutionalized at great expense to the state. The parents of autistic children do not expect pity. They do, however, expect help.

The therapy pioneered by Texas researcher Ivar Lovaas has produced life-altering results for many autistic children. The therapy's price tag is, unfortunately, exorbitant. It can cost up to $60,000 a year because it provides autistic children with one-on-one treatment for 20 to 40 hours a week.

In essence, the court said that no law requires the provision of medically necessary services. So, autistic children are not being treated unfairly under the law. It is hard to disagree with the logic of this court decision or with the vision of governance it reflects.

Yet it would be a grotesque distortion of this ruling to conclude that governments need only do what courts compel them to do. True, the expense for the therapy in question is daunting. But surely the needs of autistic children and their families deserve a place at the top of any priority list for any government.

Think of the government waste and bungling recited annually in auditor general reports. Think of the $101 million for two corporate jets for the federal government or the $100 million lost in the sponsorship scandal. Think of the $8.9 billion surplus the federal government will be holding in its fist at the end of this fiscal year.

And then forget the wrangling over federal versus provincial responsibilities. Just think of the autistic children and their families and you will likely agree that there is money in the provincial and the federal treasuries to help. It only requires a will.

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This is an edited excerpt of an editorial from The Record, Waterloo Region.

[Mike & Jean]

Get to your computers – the Poll Question of the day at CKNW is whether or not you think autism treatment should be fully funded.

Get there and vote as there are likely to be autism related segments on the Jennifer Mather Show tomorrow.

The site is cknw.com and the Poll Question is down near the bottom on the left-side

Vote now and vote often

[Barbara Rodrigues]

For those of you wanting to print up petitions.

https://featbc.org/petition.pdf

If that doesn't work go to http://www.featbc.org and scroll down.

Thanks – let's get this going!!!

"In the confrontation between the stream and the rock, the stream always wins- not through strength but by perseverance." H. Jackson Brown

Barbara

(Jean – I stole your ideas for quotes :-)

[Author]

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