[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.

 

---

—-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

 

---

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

[Todd Dea]

Stella,

I appreciate your response, I really do,, but do you really think that having a couple of books in the library constitutes "support" ?

You are likely the pre-eminant Autism Library in British Columbia. How many books would you think you have that pertain to, or are mostly based on, bio-medical approaches to intervention ?

I'm a parent. One who as been at this for just less than 6 months. I have over 20 on bio-med and probably 10 or so on ABA. I'm guessing I have you beat by a fair amount in one of those areas.

Also, can you honestly say that the ASBC is friendly towards any aspect of the bio-medical approach to intervention ? Or at least as far as any parent (not involved in the organization) could tell ?

You were a wonderful resource for a newly diagnosed parent looking for information, but when I saw you as recently as October of last year when I asked you about bio-med information you have to tell you that you did a whole lot of "humming and hawing" before sending me on my way with a copy of the Lovaas study, a DTT video tape, and the Lynn Hamilton book (amazing resource by the way) that I had to ask for.

Again, my intention here wasn't to discuss bio-med specifically (and thereby breaking the rules) but in that you opened the door (or kept it open), I think it is an incredibly poiniant or relevant fact that information about this potentially very valuable resource is being withheld (through lack of support) from parents here in B.C. by the two organizations mentioned.

When we were diagnosed in late September, I was conversing with around 10 other families in the same boat as us (fairly newly diagnosed) and not one of them had heard of, or were considering looking into any medical interventions for their child. This was for the sole reason that no one had yet given them any information about it.

How is it fair in any way that some of these kids might not be given the same chance or opportunity, to reach their absolute potential, that my child will, purely because the information never reached their parents ?

[Jenn Ralph]

Hi Todd (and whoever else is interested)…

Thanks for your comments. Your questions are honest and intelligent, and ones that I and many other parents have had and continue to have.

I disagree with you re: behavioural approach only "ad infinitum". There is more research being done now in the last few years than ever before in history combined. And I also disagree with you re: Lovaas' first study and the first parents – there was alot of use and talk about "adversives" then, which Lovaas did employ in the earliest studies, so, no, it wasn't guaranteed that it would be better than say, the special ed of the time. I think those parents took a risk that made sense to them – the same way many parents now are doing biomedical inquiries and testing, while doing and not interfering in their ABA programs.

If you would like to discuss further to hear our experiences and knowledge from 6 years of research and experience, do feel free to contact us at any time. Jennifer.r@shaw.ca

[Todd Dea]

Jenn,

In summarizing the "purpose" of the site or organization you really kind of clarify my point or my question to the powers that be, as to whether it is time to change or alter it's "purpose".

You and every parent that has been at this for longer than 6 months or so, knows that there likely will never be another science based control study on any other behavioral approach. What parent (given what we know now) would permit their child to be part of a control group when early intervention is so important and time is of the essence.

I wasn't around at the time but I kind of disagree with you about the early Lovaas parents. How much of a "risk" were they really taking, given the other options (none) that were available to them at that time.

So again, the category of "evidence and science based" behavioral interventions is likely to be occupied by "Lovaas ABA only" for infinitum.

As far as the bio-medical approach is concerned I certainly hope and believe that you are right but I also wouldn't be surprised if it takes awhile to provide science based "proof" to the nay sayers given that is pretty much exclusively doctors and parents groups who are leading or conducting the studies.

Given the above, the question remains, do you stick to the original purpose and risk becoming irrelevant and outdated as a resource or do you look at changing or altering your course to stay current and informative to your audience.

[Stella Li]

Todd:

"And while I'm on a roll here with questions, why on god's green earth is there no support from FEAT or ASBC for the Bio-Medical approach as a possible compliment to behavioral (ABA)therapy in a child's intervention program…."

The ASBC does provide info on bio-medical approach. Our older materials and the newest library materials from Dec 2007 all include information on this approach.

Call or email me if you like: 604 434 0880
shui @ autismbc . ca

Stella

[Jenn Ralph]

Hi all.
The reason this chat board and forum is ABA-related only is due to the purpose of the site, which is sharing information about evidence and science based treatment for autism.
Traditionally, and even right now, "ABA only" falls in that category. Evidence-based, and science-based treatment means there is published data, and improvements in one, several or many children is not just anecdotal and is proven to be statistically significant, preferably with a control group. Lovaas ABA provides us with this knowledge.
That being said, there is increasing evidence (and therefore more research being done) that there are indeed many biomedical causes and treatments in many children to what we know as "autism". This site is not the place for me or anyone else to discuss that issue, because it is not yet "proven" under the aforementioned conditions. The FEAT board has always said that any other treatment that becomes proven through evidence will be welcome on this site, and I think it is only a matter of time before the biomed info proves that out.
We should also keep in mind that all of the families who were in the original Lovaas studies were, at the time, trying a treatment that was then unproven.
If anyone wants to discuss further – jennifer.r@shaw.ca

See you all March 2nd.

[Luke’s mama]

Well Todd and David

I would like to chime in here.

I agree that we need to educate the other 95% that need to be in the know. They need to know how autism will affect the rest of the population (without appropriate life-changing ABA therapy and possibly bio-med) the person with autism is going to be "assisted" for the rest of his life.

Would it be not more useful to educate the 95% and use the rally as our tool to share not only what we struggle with but that the fact is it is a challenge all of society will have.

Thankfully we are able to see the change in the general public's concern for autism treatment especially I'd say in the last 5 years since Hollywood celebs are talking and doing tell all books.

But let's not forget the troopers in the front lines that fought to give us our funding we currently collect. That is not a lot but better than nothing of course so our applause to the people that were out there.

However the situation remains that if we cannot attract the votes from the rest of the non-autistic (forgive me use of this term) to bring in their votes for our kids to the right office, we could be doing this over and over until whenever.

Making it essential that the public need to see how life-changing autism is vs. cancer is important. In my limited community special needs is accepted but not necessary celebrated and this rally is what we need.

Comments?

Hannah for Luke

[Todd Dea]

Well David,

That's all well and good but what do you think the success rate is of getting any of these already motivated people, MORE , "motivated into political action" as you put it ?

I'm pretty sure any family, friends and just regular folks familiar with what our families are going through (especially ones willing to give up an afternoon to come out), are already on board, and likely don't need much further encouragement when it comes to where to put their vote come election time.

What Norm was talking about was getting the message out to the other 95% of the population which if successful would certainly help us achieve our goals a whole lot quicker.

Another question for you david (seeing as how you may be in the know); is anyone evaluating the success of the "Lovaas ABA is the only way" slogan or platform ??

My observation as a newly diagnosed parent is that fewer and fewer people are following this approach. The old guard certainly is, but the growth seen in the number of alternate (ABA like) offerings here in the lower mainland certainly tells us that somebody is buying their services. Curiously, I've heard more than a few different times that, "Even Lovaas doesn't do Lovaas "style" ABA anymore".

And while I'm on a roll here with questions, why on god's green earth is there no support from FEAT or ASBC for the Bio-Medical approach as a possible compliment to behavioral (ABA)therapy in a child's intervention program. Go to FEAT sites in other cities (both Canada and the United States)and they include bio-med information and links for parents to look into and make up their own mind's about what approach or balance between approaches is right for them.

My take on all of this is that we would likely get a hell of a lot more buy in and support from friends, family and the public in general if it was a more "comprehensive" or "inclusive" message that was being presented.

Thoughts ?

[David Chan]

Well Norm,

Very observant, no we don't need to preach to the choir, but, the choir members have family, friends, just regular folks that see the injustice of the situation. Those people need to motivated into political action.

Raising awareness, really awesome, because people need to know, but you have to have a follow up.

OK we know, what can I do about it, that is what the rally is about.

See ya, and who ever else you can bring with you there

Mr. P's Dad

[Norm Tailless]

“Medicare for Autism Now!” Rally

Sorry if this is a dumb question. I am very new to this sort of thing. I also am quite aware that even the services that we do have today are because of the very hard work done by some of the speakers and all the parents that were doing this sort of thing in the past.

However, my question is:
What is the purpose of this rally? It seems to me all the people who would be attending are painfully aware of the problems. How do we get the attention of the people who aren't? Won't the speakers be "preaching to the choir"?

Shouldn't we be doing something more attention grabbing like what Stefan Mariniou is doing? Shouldn't we be marching on Burrard street bridge, gather in front of the Children's Hospital, or line up across Lion's Gate bridge instead?

Again, I am sorry if this is naive or dumb, but it seems like all the other groups pull some sort of stunt for media and public attention.

[Andrew Kavchak]

Hi Folks,

On the heels of Health Minister Tony Clement's statement in the House yesterday of how great his government is because they took action on autism by contributing a $1 million to a university autism chair and holding an [by invitation only and so far secret results] autism symposium, a new video about the lack of a National Autism Strategy in Canada has now been posted a YouTube. Check it out…

http://www.youtube.com/watch?v=AfCiNPvLtY4

[Author]

Replies