[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]

Andrew, Please contact me at nwalton8021 at gmail dot com.

Nancy

[Andrew Kavchak]

Hi Folks,

Wow! The new website looks cool.

Just wanted to share this with you…I recently uploaded a video about the need for governments to move beyond “raising autism awareness” and undertake some “autism action”: https://www.youtube.com/watch?v=L3Azg3v3TUI

Earlier this summer I posted another video about the need for a National Autism Strategy: https://www.youtube.com/watch?v=UmG1-95PYIE

Cheers!

Andrew Kavchak (Ottawa)

 

[Andrew Kavchak]

Hi Folks,

Wow! The new website looks cool.

Just wanted to share this with you…I recently got a bit fed up with the never-ending campaign to “raise autism awareness” and the appearance that it is used as a cover by some politicians to do nothing (i.e., government (in)action).  So I made this video on the topic: https://www.youtube.com/watch?v=L3Azg3v3TUI

Earlier this summer I posted another video about the need for a National Autism Strategy: https://www.youtube.com/watch?v=UmG1-95PYIE

Cheers!

Andrew Kavchak (Ottawa)

 

[Andrew Kavchak]

Hi Folks,

Well, here is another interesting autism story that sheds some light on the treatment of people with autism in this country and the lack of a comprehensive set of policies and programs to deal with the issue.

I recently heard this story on the radio and I've been thinking a lot about it lately.

http://www.cbc.ca/news/canada/ottawa/michael-neve-autism-hospital-group-home-1.3647305

Imagine this: in Canada's capital city, it makes the news when an adult with autism gets a spot in a "group home". Why? Because he has been waiting for the spot for three years while resting in a bed in the Ottawa mental hospital.

Just check out the figures in the article about the cost!

And then check out the part where it says that he was not the only adult with autism being kept in the mental hospital while waiting for a group home spot to open up. There are more. So, in a few years when the government finally has a group home spot that opens up for the others, will that make the news in the capital city as well?

It is understandable that some long term facilities may not be just waiting for our kids to come of age and that there may be a waiting period. But how long is reasonable? And what does society do with the adults in the meantime? Is warehousing adults with autism in a mental hospital with security guards, etc. the only solution? There has got to be a better way, that is also cheaper for society.

I never cease to be stunned by autism news. I suppose that by now, after a decade in the field, nothing should surprise me. But it does.

Last week, the Ontario government announced some sort of reversal of their previously-announced new autism program (the one that would involve reducing the cut off age for therapy from six to five). I remember speaking to my MPP on the phone just before that. I told him that the proposed plan was wrong-headed, and he replied that they had to "go with the evidence and the facts". What evidence and facts? The one his government made up? Well, after a lot of parents in the community made a fuss, the government decided they had to change the plan. I am not sure at this point whether the changes they announced are meaningful, but I wonder….what about the "evidence and facts" that they relied on in the first place? Suddenly, they are no good anymore? I guess not. I don't want to sound cynical and suggest that every time you hear a politician attempt to justify something they are full of BS, but the truth is that there is a whole lot of BS involved in politico-speak.

[Andrew Kavchak]

Hi Folks,

Here is a video about autism and the need for a National Autism Strategy in Canada that includes access to IBI/ABA treatment through Medicare, which I hope you will enjoy.

https://www.youtube.com/watch?v=UmG1-95PYIE&feature=youtu.be

Cheers,

Andrew Kavchak (Ottawa)

[Jemma Lee]

For a prime example of a government-funded organization "advocating" for disabled children, do a google search of the following:

"Statement from Autism Ontario regarding autism programming in Ontario"

This, ladies and gentlemen, is how you earn an Order of Canada.

[Andrew Kavchak]

Hi Folks,
For those who may be interested in seeing pictures from the rally on the Hill that I wrote about in a previous post, please check out:
http://www.autismonthehill.ca/2016/

There are pictures of the crowd, the politicians, and the signs…including the one that I was carrying calling for a National Autism Strategy.

Cheers,
Andrew

[Andrew Kavchak]

Hi Folks,

Sunny day here in Ottawa. Perfect day for an outdoor autism rally on Parliament Hill.

For the past few days the annual CASDA conference has been going on and I found out that there would be a rally on the Hill at noon. I love it when things like that happen, so I went with my sandwich board sign, petition clipboard and my autism handout sheet calling for a National Autism Strategy.

Well, a lot of people showed up. Many parents in Ottawa who are upset about the recent provincial government cuts to the IBI program were out in force.

Then the speakers started taking the microphone. I don't want to sound jaded, but this is Ottawa, and the substance is often missing.

The event was hosted by a grandma who started a new "kickstart" type of program to help guide parents of toddlers that look like they might be on the spectrum.

She started off by introducing a young girl who claimed she was autistic and liked it and liked being different and wanted people to stop bullying her and to have more faith and confidence in her, etc.

Then another 17 year old boy spoke and claimed to have autism and was happy having a different point of view. He wanted people to support him and others like him and give him confidence, etc.

Both of these speakers were exceptionally high functioning and I never really understood what was the purpose of having such people speak at rallies where there were many parents of non-verbal kids who are desperately begging for access to IBI (which those speakers did not seem to need, and certainly made no reference to treatment).

Then Seamus O'Regan spoke. He is a new MP who used to be a host on Canada AM. Well, he said that his cousin's kid is autistic and he saw first hand the challenges that the family went through. Then he gave a shoutout to the Dobbin family (wealthy supporters of autism programs in Newfoundland).

Then an MP by the name of Matthew Dube was supposed to speak, but had his statement read in French by someone else. In it, he said that he will work with Mike Lake and others to get the resources our community needs.

What? Work with Mike Lake to get resources that our community needs? I could not believe what I was hearing. For some background on how Mike Lake thwarted our community getting what it needs in the past, please see:
https://featbc.org/downloads/FEATBC_release_02_26_07.pdf

Then Mike Lake was introduced. The host indicated that whenever he speaks on Autism Awareness Day in the House of Commons, he always mentions his son, and everyone listens, and then gives him a standing ovation. In this way, he is helping, apparently, by raising awareness. This is in sharp contrast to my reaction whenever I hear him speak, which usually involves my getting these sort of guttural gagging reflexes.

As is so easily predictable, he spoke about….his son Jaden and Jaden's sister who loves her brother. We all get that, don't we? Now, from a public policy perspective, what needs to be done? What can be done? What will be done? Anything on that? Nope. Nothing. Zilch. Not a thing.

Then Senator Jim Munson spoke. He's our champion the Hill. He spoke about the importance of parents leading the cause and being the voice for the nation to articulate what governments can do. Then, being the smooth politician that he is, he paid his respects to the previous Conservative government's getting the "Ready Willing and Able" and "RDSP" programs going, which he said were like a social infrastructure base that we needed to keep building on. Then he concluded by saying that he will retire in five years, but will keep working until we have a National Autism Strategy in place.

OK, so, one speaker mentioned a National Autism Strategy.
No one mentioned treatment.
No one mentioned IBI or ABA.
In fact, no one really mentioned any problems.
If I were not familiar with the real problems, I would have been under the impression that this was a party.
We are way too docile in Ottawa.
So…see you next year!

And afterwards I spoke to some people I knew and had met before and some new people that I was meeting for the first time. It was pleasant to meet folks from BC!

But then I notice Mike Lake out of the corner of my eye. Last time I saw him a few years ago he stuck his hand out towards me, but I refused to shake it. This time he followed me as I left the demonstration and said he wanted to talk to me. I told him that the desire was not mutual, but when I stopped to fold up my sandwich board sign he ambushed me and I got those gagging reflexes again. I told him that he is the only MP I ever met who returned the petition I gave him and refused to table it…and I did not see any change in his approach since and that it seemed to me that he was always an obstacle to our community. He then said that he did not know much about petitions 10 years ago but he would have tabled it if he had known what he now knows..namely, that petitions don't have to come from your constituents but can be from any Canadians.

I was still gagging…

[Andrew Kavchak]

Hi Folks,

Here is another sad article about the state of affairs in Ontario…

From:
http://www.durhamregion.com/news-story/6482462-majority-of-durham-children-on-autism-therapy-waiting-list-will-be-booted-under-new-rules/

Majority of Durham children on autism therapy waiting list will be booted under new rules

Provincial cutting off kids five and older from intensive behavioral therapy wait list

By Reka Szekely

DURHAM — Durham parents say they’re “just gutted” to learn that their children with autism are being booted from a wait list for intensive behavioural intervention therapy after years of waiting for services.

The provincial government announced recent changes that narrow IBI therapy to children aged two to four as experts say that’s the most effective window for intense intervention.

But in Durham Region, the wait list for IBI therapy is three to four years, which means that the majority of the children on the wait list — 81 of 131 — will be removed as they are five or older.

Aaron Fogelman and Saralyn MacDonald have been told their son Jacob is second on the list in Durham, but he is now five and will turn six in July. He’s been on the waiting list almost four years, since shortly before his second birthday.

Even if Jacob, who is non-verbal, is able to begin IBI therapy before the May 1 deadline, his parents question whether he’ll receive the full year or two other children receive or whether it will be cut off after a few months.

“We’ve jumped through every hoop, done everything they asked and it’s not us they’re punishing, it’s our kid,” said Mr. Fogelman. “He’s never done anything wrong.”

Mr. Fogelman and Ms. MacDonald were one of three Durham families to meet with NDP MPP Jennifer French last week to discuss their fears.

Pickering-Scarborough East MPP Tracy MacCharles is the minister of Children and Youth Services and the lead on the file. She said her heart goes out to families who are on the wait list, but the government is following clinical advice.

The government plans to invest $333 million in autism services which includes applied behavioural therapy which children on the IBI list can transition into.

Ms. MacCharles said families who are removed from the wait list will receive a one-time funding of $8,000 which they can choose to use in a manner that works for them, whether that’s for speech therapy or respite services.

“That means they get service right away instead of continuing to wait,” she said. “And once that money is spent, the families will be eligible for improved public autism services just as always and that program will be longer periods of time and tailored to individual children’s’ needs.”

But local families believe there is no substitute for IBI therapy which includes intense one-on-one work with children for 20 to 25 hours a week, a much more intense form of therapy than applied behaviour analysis which is delivered in 10- to 20-hour modules over a longer period of time.

The $8,000 is just a fraction of the $40,000 to $50,000 cost of IBI.

“It’s hush money,” said Tobi Riley, who met with Ms. French along with her husband Adam and son Mason. “That’s $8,000 and thank you for spending three years on the wait list and now my son’s not a candidate for IBI.”

Mason is four and also non-verbal. He is number 70 on the list currently, but they fear he’ll be dropped from it when he turns five in June. They understand that under ideal circumstances children should receive IBI therapy as early as possible, but that simply hasn’t been an option for them as they have already been waiting three years.

“I would be content with one year, I thought we were going to get two, but I know it would be leaps and bounds for him,” said Ms. Riley, who has collected 500 signatures on a petition opposing the change.

Ms. French and the NDP are advocating that children already on the list be grandfathered for IBI.

“The challenge with that proposal, as tempting as it may sound, is you’re leaving kids in IBI who are not in the right developmental window … if we were to do that even with our investments, we’re going to prevent kids under the age of five from getting the intervention that they need,” said Ms. MacCharles.

That’s cold comfort to parents who have spent years waiting and whose children will simply be skipped as a result of the rule changes.

“I’m starting to become jaded,” said Mr. Fogelman. “Every time the government spends money, I say why didn’t he get it? I don’t want to be that angry guy.”

[Andrew Kavchak]

Hi Folks,

Sometimes some blunt talk can be refreshing…despite all the years of lobbying, and the funding our provincial and national "societies", etc. when the government wants to cut…they don't mind picking on the weakest who don't vote. Now, from what I have heard in the media, the government in Ontario has introduced a new autism program which limits ABA/IBI to ages of 2-4 (the historic cutoff of age six is not being eliminated, it is being lowered to age 5!). Yup, we're going backwards. Below is a letter that tells it like it is.

From:
http://www.brantfordexpositor.ca/2016/04/06/autism-service-cuts-idiotic

I wonder how the powers in charge decided that autism ends at the age of five and children no longer need after-school supports. These supports might be day care or trips to local places, with a personal support worker in attendance. But, as far as I know, autism does not end at five. It is a lifelong affliction.

This decision to end services for autistic kids is one of the most idiotic I have ever heard. It will mean thousands of people who have an autistic child will have to drop out of the workforce and go on social services. How does that saves money? There will be fewer tax dollars coming in and more going out. Thousands of people will be affected by this decision

But, then again, what smart thing have we seen from this provincial Liberal government since it came to power?

Dave Van De Cappelle

[Author]

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