[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]

The following was a paragraph Andrew had sent me and I want to pass this information on to the feat chat members:

"The rules of the House of Commons for the tabling of petitions are that the MPs must received petitions with original signatures and the full address of Canadians (no foreigners). The MPs must then pass the petitions on to the Clerk of Petitions who verifies them and certifies them as being OK for tabling in the House. MPs do not have to table the petition. Also, just because an MP tables a petition does not mean they personally agree with it. Some MPs apparently never table petitions (it makes you wonder what do they think they are there for). Once tabled, the government is require to respond within 45 days. If it does not respond then the matter is refered to a committee of the House of Commons (the most relevant standing committee). Thus, no faxes are allowed. Although we hope to make a splash in the media when the first ones are tabled on Tuesday, Canadians can keep the constant flow of petitions being filed with their MPs forever! Let's start a flood!"

If you could get your 25 signatures in by the end of this week, it will take some time to get through the mail, and get processed. The sooner the better. Our timeline is really 45 days, but lets get the bulk of the signatures in this week while media is interested.

Nancy Walton

[Justin Himmelright]

My head has been spinning with possibilities over the past few days. The media spotlight is on, if you have something to say about this issue, say it now. Put your message out to any newspaper, radio or television station you can. Do not let the media fade this away over the weekend, stay on them.

My thoughts on the party line…..The Provincial Government has congratulated themselves for maintaining their accountability to taxpayers for allocation of tax dollars. Now the spotlight is really on…there is no question who is responsible for the future of thousands of children. They need to hear what taxpayers think of their priorities when it comes to government spending. State your opinion, get your friends and relatives to call and write as well.

Autism is front page news in the Globe and Mail, the National Post, and the Vancouver Sun this weekend. Use it!

There is a wonderful national radio program on CBC called Cross Country Checkup. It plays every Sunday for 2 hours and it is a call in program where citizens from across the counry call in and sound off on the the question of the day. The sharp witted and razor tongued Rex Murphy is the moderator. I have written an email and suggested that they do a future program on the recent Supreme Court ruling on Autism treatment. A few more voices may help to convince them. Send an email to checkup@cbc.ca and make the same suggestion. If we are lucky we will get Rex to face off with Geoff Plant.

To everyone out there, take heart. My last name is rare and a quick internet search will get you my phone number. We have been getting phone calls from across the country, people offering support, people expressing their outrage….

Tomorrow is another day. There is a provincial election coming. There is a minority government Ottawa. There is more awareness than there has ever been. We have a lot of allies in the media now, not just Bill Good (bless his heart). If there was ever a time to press the issue, it is now. Start tomorrow, make your phone calls, write your letters, team up with other parents, picket your MP and MLA. Every time you feel you can't do it any more, think of your child, think of their life, think of the tireless hours spent by the Auton parents and what you owe them. Think of Geoff Plant kicking your child and stealing their lunch money….you will find more strength than you ever thought you had.

Sincerely,
Justin Himmelright
Griffen's Dad

[Lou Arab]

One more thing…

I just wanted to echo some of the comments already made about the good that the Auton challenge did do.

I can't imagine being one of the Auton families and putting 10 years into a legal battle only to get this result at the end.

However, if it makes you feel any better, I'm not certain we would have even heard of ABA were it not for Auton. Or we might have heard of it, but not investigated it enough. Or we wouldn't have been able to access consultatants to design and deliver a program to our son. Or, we wouldn't have been able to access the funding that we did (some from BC, more from Alberta) to run those programs. The funding isn't enough, but it was enough for some families (like ours) to bring an ABA program into the realm of possibility.

Ethan has gained 15 IQ points since starting ABA. His language skills have gone from the single digit percentlie to over the 60th. He's engaged with the world now – talking, listening to what's going on, asking questions, and questions, and more questions, getting into trouble, starting to gain friends. He has further to go – but he's made a lot of progress. And the Auton families can take some share of the credit.

I think in the post supreme court world, governments will try to evade their responsibility to our kids. But it will be much harder than it was 10 years ago. Too many families have seen the benefit of ABA, too many reporters have learned about what ABA can mean to kids, and the public has become more educated and sympathetic.

We've been lied to and let down by all political parties. But political parties are not monolitic. They are democratic institutions made up of thousands of people like us. And not everyone in those parties is happy with the way governments have handled autism. I think we parents have to get active in what ever party we feel most comfortable in and start pushing the politicians from within, as well as keeping up the public pressure FEAT has been so good at. The battle is different now, the courts are not on our side, so we need to appeal to public opinion like never before.

Lou Arab
Ethan's dad

[Lou Arab]

Re: Scarce resources

I seem to recall Liberal Opposition MLAs promising 'needs based budgeting' for the Ministry of Children and Families. In other words, MCF was sooooooo important, that the government would decided what the need was, and budget accordingly – taking from other areas if necessary.

I guess our children don't need IBI then. Because politicians wouldn't break a promise would they???? Not to children with special needs?? Right??

Lou Arab
Ethan's dad

[Susan Burns]

thanks for saying it all for us so well, folks. James thanks you and mommy thanks you.

[Avery Raskin]

Yes, well, I'm up too, Nancy, but I sure don't have as much
energy as you right now ;-) I'm just sitting here wondering if our
friends in Victoria have sent their letters to all the Auton and
Anderson families yet, telling them their children are no longer
eligible for their "programs." Since most of the Auton case
originators now have children in double-digit ages, let alone 5
and under, I'm sure it will only be a matter of days or weeks
before we all get our "so sorry, but there's just not enough
money to go around" letters. I'm sure they will express plenty of
sympathy for our children and express their admiration of our
"roles as our children's advocates" before washing their hands of
our kids once again. We are unfortunately back to the bad old
days, when government can make pleasant noises and do
nothing. They will be pleasant until the current wave of publicity
dies, and then they will shove the knives in. I wish I could be
more optimistic, but I was there to hear all the promises Gordon
and his gang made, and they haven't lived up to one of them, so
it's very hard to take him at his word now.

And Nancy, thank you for having the energy to press on with the
battle, since the war is indeed back on.

Avery

[Nancy Walton]

Hey boys, your keeping me up. It's no wonder our kids don't sleep much…just take a look at their parent's behavior!!! (note the time on the last 4 e-mails for those of you reading this at an appropriate hour Sunday)

Love y'all

Nancy

[Nancy Walton]

Correction:

Petition can be downloaded at

featbc.org/petition.pdf

Just type this in to your address bar, click go (or hit the return key) and there it is. Print up two copies as you need the wording on both pages and this version of the petition has room for 15 signatures per page.

Nancy

[Nancy Walton]

Urgent Attention: this is a take-action message. please read fully

We have appealed to the government and were ignored.
We have appealed to the courts and were turned down.

Now it is time to appeal to the people of Canada. To our friends, neighbours, relatives, co-workers. To the other parents in the soccor club, to other parents at your children's school, to people in your local mall.

The Auton group has done a tremendous effort to lay the ground work (thanks to all of you). Andrew Kavchak has stimulated the interest in Ottawa (thanks to you to Andrew). People are angered by the Supreme Court of Canada decision. The media is focused on us right now. And YOU, yes YOU, each one of you reading feat chat messages, can make a difference.

On Tuesday, Andrew's petition will be tabled in the House of Commons. We have sent petitions to at least 11 MP's. I have record of about 600 signatures. This is good. BUT WE CAN DO BETTER.

Please download the petition from the Home page of the featbc website. Get 25 signatures and send it in to your MP (addresses are in the phone book. No stamp necessary). If you have the energy (and the anger), write a personal letter too. If you can, follow-up with a phone call. But at minimum, get 25 signatures and get them sent in.

There must be over 200 members on the featbc chat. 200X25 is 5000. Can we get 5000 signatures??? Lets try. We need to send a strong message to Ottawa, that Canadians are not happy with that court decision and we will not let the disabled be discriminated against.

Remember to e-mail me with who you sent your petition to and how many signatures you got.

Also, please make sure people do not sign the hard copy petition twice (electronic one doesn't count in parliament)

Nancy Walton
wiklo@shaw.ca

[Stephen Paperman]

Well, David, after all, resources are indeed scarce. I seem to remember that resources for treating cancer were so scarce in the Interior that Minister Sindi Hawkins had to be airlifted into Vancouver by helicopter or jet or something so she could get her tender loving care at a hospital down here. I remember reading all her stories in the Province about the wonderful care she got — no expense spared. I guess having someone drive her down from the Okanogan for her chemo was just too darn difficult, and what the heck, an air ambulance ride only costs about the same amount of dough as a year's worth of ABA treatment. Yup, resources are scarce. If you're the parent of a child with autism, resources are scarce. If you're a government minister, or the friend of a government minister, then resources are strangely abundant.

Lest we all forget, may I remind the honorable members that when they wanted to build three boats for 300 gazillion dollars, there was no trouble finding the cash. And when they decided to sell them three years later for $19.95 each, no one worried about all the losses.

Or let's talk about how when you're a friend of government, and have been so kind to give testimony in court for them, there's no problem getting millions of dollars in contracts to provide "services" to children with autism, even though you have no expertise in autism to speak of.

Or how if you're a friend to government who helps them design phoney programs to help get out of delivering any legitimate treatment, then you get a couple of million dollars MORE to "evaluate" the program you designed. Oh, and it never hurts to be a university professor with a big fat mouth and a pinguis puga…Keeps you from falling over while you're sticking your big fat face into the trough of taxpayer dollars. Oh, but I'm sorry, resources are SCARCE.

Sure resources are scarce. After you're done lining the pockets of your friends, there just isn't any money left for suffering children.

Resources. Yeah, sure.

[Author]

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