[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

[Monika Lange]

One last comment on "choice". I will know we've succeeded when the Government gives me this one:

Get your kid to his state funded/provided scientifically proven autism treatment — OR — risk having him apprehended as a child at risk.

When you're given choices by King Campbell, think to yourself, is this a bull with two horns, or one. Backed into a corner, you can escape the bull with one horn. Two horns is a dilemma, not a choice.

It'll be a cold day in hell when I'll be made to feel ashamed for any choices I've made for my son. And I hope on that day everyone that truly holds responsibility will be freezin' their little tushies off.

[Stella Li]

Thanks Monika and Mr P's mom for your posts. I agree with everything you said.

As parents if we suspect that our children have allergies, digestive issues, unknown pain or other medical problems that affect their behaviours and learning, we should take our children to the doctor ASAP to get them tested. Any medical cause for behaviours should be ruled out first, before the child can get the most from the ABA program. This is a very basic task for parents to do.

Take treating cancer as example again: some parents may do chemotherapy and a change of diet/dietary supplement for their children. When the child gets better the parent likes to say "hey change of diet is the most important cancer treatment I did for my child and with chemotherapy going side by side he gets better. Why didn't people tell me more about this change in diet but keep telling me about chemotherapy only?"…What can we say?

In the past couple of years I have the privilege to talk to many parents who have a newly diagnosed child. Some listened, made a wise choice and moved in the right direction. Their children benefit, learn the best they can when they are still young, at home and at school. For whatever reason some did not or could not… It's sad to see the divided autism community in BC. Parents can't get a consensus on what is right to do. There are so many "autism intervention" out there that claimed to be effective or claimed to treat the core issue of autism yet lack the scientific proofs… There are so many "service providers" out there but we lack a quality control college in BC to control the quality of their service. Unfortunately some parents "choose" the wrong treatment approach (or the wrong service provider) and wasted their child's precious time. Sigh!!

Lovaas ABA is the scientifically proven treatment for children with autism. A few years ago parents like Sabrina, Tamara, David, Jenny… spent time guiding me to the right direction. If not because of their help, my child won't be doing so well at home, at school and in the community now. Lovaas ABA works. We experienced the great results Lovaas ABA brought us and we like to pass it on!

At the ASBC, we have materials on different treatment approach. However when parents see us we like to guide them to the right direction ASAP so that no time is wasted on their young child's life. Parents are welcome to ask questions we will try our best to answer.

Stella
p.s. Let's be united. We need each other to fight the good fight. Hope to see you at the March 2nd rally.

[David Chan]

Thanks Monika, but it was Mr. P's Mom that composed the last post.

Got to give credit to where it is due.

Mr. P's Dad

[Monika Lange]

Thanks, David, for the excellent point on the importance on the divide and conquer concept. I totally agree.

We argue about what the gold standard is. It wasn't up to parents to determine the gold standard treatment for cancer. All I as a parent would have to do is get my kid to the medical appointments and hold his hand.

To reiterate, we're not given treatment by the Government, we're given "choices" and a pittance to pay for them. They let us pick our own poison and then cloak their involvement in providing it to us as far as possible. That way, when insignificant funds and unlimited treatment options cloud our ability to choose, and then ultimately fail to produce recovered kids, it can be blamed on poor parental choices. You picked the wrong poison. If our house is currently divided, it's over this choice: what's the best poison? (Again, gored on the horns of a dilemma.) Anything less than 100% government funding is a poison, just as taking a fraction of the dose of antibiotics or a fraction of the prescribed chemotherapy would be. I think we can all agree on one thing: The best is good enough for our kids.

Words like "freedom", "options", "choices" evoke a power of possiblity far beyond the reality of the benefits they entail (e.g., the freedom to cast a vote in a democratic election).

The Premier's party line of "choices in autism treatment" was carefully crafted by government funded lawyers to meet a specific objective. It is a deception: It seems to give its victims options, because it makes us feel we are in control, when actually we are puppets.

[David Chan]

Kudos to you, Monika, for crafting such a concise, logical, and fact-based commentary on the concept of choice for autism treatment.

I would like to make one additional point, which is this–the government and schools absolutely LOVE, I re-iterate LOVE the dissension and in-fighting that occurs amongst parents over treatment for autism. As long as we remain a "house divided" they can say that there is no standard treatment for autism (although we know that Lovaas style ABA is best practice in many jurisdictions, like New York State, for instance) because even parents of affected children cannot agree. Therefore if we cannot agree, why should they make any effort to further fund Lovaas therapy or provide a Lovaas environment for a child in school ?!!! I cannot emphasize enough what a powerful weapon
WE are providing here for the powers that be to use against us.

With regard to exploring other treatment options, I would emphasize this caveat. While exploring other options, the clock on the wall is ticking steadily, as your child ages without intervention. My husband and I have had bitter first-hand experience with delays in diagnosis, and close to a year wasted in a group language therapy class (the dreaded Hanen method which is completely unsuitable for children with autism) as well as various dietary supplements (DMG, Efamol focus, etc). and dietary modifications which proved to be fruitless. What we SHOULD have been providing to our son was Lovaas therapy, which he finally started at the age of five, with steady and significant progress ever since. And I would not have discovered this therapy without the invaluable input of Sabrina, Jean Lewis, and other FEAT parents. I shudder when I think of having possibly wasted even more time.

Mr. P's Mom
A member of the old guard, and proud of it!

[Monika Lange]

I would like to comment on the statement: "Choosing whatever treatment approach for your child is a personal choice." My view is that this statement sounds pretty, but is really quite dangerous.

Let me give you an analogy. If cancer treatment was not fully government funded, a parent would have to make a personal choice about how to help his cancer stricken child. That “choice” would be affected by many subjective things: their ability to pay, their judgment, their scientific knowledge, their religion, etc. Some would throw up their hands in defeat, others would apply ginseng poultices, yet others would apply varying intensities of chemotherapy (maybe a little if they’re middle class earners; maybe a lot if they’re Bill Gates). These days effective cancer treatment is fully funded, so if you made a personal choice to treat your child's cancer with anything other than the most effective form and intensity of scientifically proven treatment, you would probably see your child apprehended from you. By the Government. The same Government that does this to your autistic kid. If this same Government gives you choices, you can be sure it’s a trick.

So, I would caution against the purported positivity of the glowing statement, "Choosing whatever treatment approach for your child is a personal choice." Remember, so long as fully funded autism treatment is not available to our kids – and currently it is not even close in BC – then the “choices” we have as parents have noticeable limitations.

But people who have choices find it hard to believe they are being manipulated or deceived. The Government is allowing us a small amount of free will in exchange for a much more powerful imposition of its own will. The Government’s objective is to pay as little as possible and only when forced to. So they give a little money and “choice” to us, thereby shifting accountability for the outcome onto our shoulders. Never accept responsibility (which “choice” implies) without also getting the power/means that needs to come with it. None of those choices the Government gives us includes 100% treatment, so any remaining choices will be between the lesser of the evils. Then we as parents are on the horns of a dilemma, and we are gored which ever way we turn. My FEAT friends, our existing choices are not your friend. We must continue to demand 100% funding for scientifically proven treatment. If there’s any question about FEAT’s mandate, that's it.

[Andrew Kavchak]

Senate of Canada
Wednesday, February 13, 2008
Hansard

Question Period

Health

National Strategy for Autism

Hon. Gerry St. Germain: Honourable senators, my question today, I believe, transcends partisanship and politics.

Some Hon. Senators: Hear, hear!

Some Hon. Senators: Oh, oh!

Senator Germain: It is a first.

Yesterday, Senator Munson asked a question of the Leader of the Government in the Senate in regard to autism. Autism is a disease of our children, and the information that was given to me is that 80 per cent of families with autistic children break down as a result of the stress. I do not know how accurate that figure is, but that is the information I have been given.

The Leader of the Government in the Senate said yesterday that the responsibility for frontline providers for treatment and assistance rests with the provinces. Could the minister tell the Senate whether there is any initiative underway that would encourage other provinces to take the lead of the Province of Alberta? The Province of Alberta is in quite a unique situation because of the amount of wealth that exists there, but there are other provinces that are fairly wealthy, such as British Columbia and Saskatchewan. Senator Peterson knows how wealthy his province is becoming.

I think there should be an initiative that reminds these people of the great responsibility that exists in regard to dealing with this horrific situation that plagues so many families in our country.

Hon. Marjory LeBreton (Leader of the Government and Secretary of State (Seniors)): Honourable senators, I know exactly what the honourable senator speaks about because a member of my own family has an autistic son.

There is a problem with the various theories that speculate as to the cause of autism. We have all read about theories that suggest that autism is caused from vaccines administered to children when they are young, to genetics, to stressful environmental issues. Some people say autism is a form of mental illness. There are people with autistic children who do not like that definition because they think there is a stigma attached to the term.

Former Senator Michael Kirby was named as the head of the Mental Health Commission. Autism fell under the rubric of mental illness in one of the studies completed by the Social Affairs Committee. The Minister of Health, Mr. Clement, has taken measures on the federal side.

However, the honourable senator is right; the delivery of health in this country is a provincial responsibility. He is also quite right that Alberta is one of the jurisdictions that is leading the way. Perhaps provincial ministers of health, when trying to collectively deal with this, could share information at a future health ministers' meeting.

In the honourable senator's own province, on October 20 of last year, $1 million was invested towards the creation of a new national chair in autism research intervention. The research happens to be located in the honourable senator's province, at Simon Fraser University, but the mandate is national in scope. Hopefully, through research and knowledge such as that, researchers will work with the provinces and territories to share best practices.

That is really what must happen here. Different jurisdictions should share best practices. Senator Munson used the example of cancer, and I think the other example used was with respect to the heart. Defining autism is unfortunately not an easy task because of the various theories in regard to what causes autism.

As a result of questions yesterday, I spoke to the Minister of Health about this issue, and he told me he could understand the concern because people in this situation are in desperate need.

The federal government is taking concrete actions to continue to work with the various stakeholders, provinces and territories to try to alleviate a situation that is causing such a desperate need for families with autistic children.

[Stella Li]

Todd the questions you asked are very true. As parents we must first rule out any underlying cause for pain, stress and tension etc so as to understand the cause for behaviours that affect the child's ability to learn and to interact.

Ask the parents who came to the ASBC parents meeting in the office last month. We discussed exactly your questions.

Again, we have resource on this, way more than a couple of books.

If you like to discuss more, I can email you tomorrow.

[Todd Dea]

Stella,

You are going to get me banned here . . .

You asked the question . . . so I truly hope the powers that be here let my answer stay posted.

I assumed the reader would read into "a couple of books" to mean a "couple of books on bio-medical". I thought I further drove home the point in the next sentence when I called you the pre-eminant library.

"What would you choose as the core therapy to help your child learn when he is young ? "

If you want me to answer honestly I don't think it is any contest. I personally don't feel you can do one without the other but if I could only do one at a time I would most certainly do the bio-medical approach to start followed up by ABA.

Remember I'm just a rookie here, but for all that I've seen so far, I feel that for many (most in my opinion) the "fog" needs to be lifted before ABA can do it's magic. How can a child properly learn if they are in pain ? How can they learn when their body is under stress and tension ?

We are doing a balanced approach of both bio-medical and ABA and for us I couldn't possibly see any other way to do it. The progress my son has made in 3 1 /2 short months is absolutely amazing.

"Choosing whatever treatment approach for your child is a personal choice. "

Apparently we completely agree on this point.

The problem is that parents in British Columbia are not being given all the information that is out there, and as such how do we (or they for that matter) truly know what their true "personal choice" would be if they had all the information at their disposal ?

[Stella Li]

Todd:

Thanks for your response.

First, I like to clarify that we have way more than "couple of books" as resources for parents.

Like yourself, I am a parent who likes to give my child the best therapy so that he can live out his full potential. I did my research when we first started a few years ago, including Lovaas ABA, bio-medical, and many other approaches.

What would you choose as the core therapy to help your child learn when he is young? I chose Lovaas ABA. That doesn't mean that I don't use other approach but Lovaas ABA is the core therapy, and is our family's life style.

A few years ago, like yourself, I went to the ASBC office to ask for help as I did not know what to do. I am grateful that the librarian guided me to the right direction so that no time was wasted. I listened and did my research, started therapy for my child ASAP and never looked back.

I took the position after the previous librarian left (her child recovered from autism).

As a professional in the rehab medicine field, I saw many children with autism during my practice years ago. Although I was giving them treatment, none of them had a chance to "recover" from autism.

Choosing whatever treatment approach for your child is a personal choice.

Good luck!

Stella

[Author]

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