[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]

Congratulations to Deb (for setting it up) and Jean and Bohdanna for such an excellent radio show exerpt on CKNW(web page given in an earlier chat e-mail).

Many topics were covered, but I was especially delighted at the excellent coverage of the issues of lack of ABA funding and difficulty getting proper ABA aides in the schools. You guys hit these two nails on the heads.

Thanks so much for your help in our cause.

Nancy (on behalf of Casey)

[Susan Burns]

i was absolutely delighted to hear all of it…..their presentation was succinct and impressive….I WONDER WHO ELSE WAS LISTENING

Susan [James's mom] spbpt@pacificcoast.net

[Isaac]

Hello Everyone,

A worthwhile autism related news piece was aired today on CKNW’s Bill Good Show (daily audience of over 460,000 — including 120,000+ Internet listeners).

*** audio here –> http://209.115.161.208/cgi/vaultfile.cgi?3-13 ***

This news clip is highly recommended! Jean Lewis and Bohdanna Popowycz did a thoroughly outstanding job of laying out BC’s autism reality today.

Topics covered in the show include the BC Supreme Court Auton case, individualized funding, education problems — including the huge obstacle of BCTF and CUPE unions — as well as the forsaken treatment rights of older children … as in kids six and up! Also discussed in the program is what it takes to be a GENUINE autism treatment consultant and the treatment funding children with autism receive in the U.S., i.e., $75,000 per year in Wisconsin.

Thank you also Debra (Antifaev), for tireless effort to keep this important issue in the media.

PLEASE NOTE: CKNW’s Bill Good autism program segment is on the web for the next seven days only (aired September 4, 2002).
–>http://209.115.161.208/cgi/vaultfile.cgi?3-13

Please ‘fast forward’ to the autism segment in the show by sliding the Audio Player’s scroll bar to the 32:30 minute mark in the program.

Any thoughts on all this? Please share with the discussion board group … there are lots of folks listening.

Isaac (Miki’s Dad)

[Debra Antifaev]

Hi Wonderful Parents of the CHAT,

Two things:
1. Does anyone speak Veitnamese? I am having an awful time trying to help a new parent wade through the maze that is the IEII. The wonderful social workers have more or less "dumped" her and she is very lost. Any help would be appreciated.

2.Keep those names and addresses rolling in. I need to provide an accurate count of all FEAT and ASBC members. (even you more "famous" people, who write often, can send me your particulars so that it is easier for me to input and keep track of!)

Thanks everyone,

Debra….Ben's Mom

dmantifaev@shaw.ca
604-531-1846 hm
604-617-7437 cell
604-531-6923 fax

[Sabrina Freeman]

I would like to add to Tamara Leger’s comments regarding the Autism 2002 conference, sponsored by Hon. Linda Reid — Minister for children under six — and one of Government’s long-time contractors , the Laurel Group (a former employer of … Hon. Linda Reid).

It is important to note that when government puts on a conference of this type, it is typically not without an agenda. There are a couple of worthwhile speakers who were likely included to make the government appear balanced; however, it is fair to say that the majority of speakers chosen have made money in the past from the Government of British Columbia, in some capacity. I’m not going to delve into this, speaker-by-speaker, to tell you about each lecturer’s history and background via a vis Government, but I AM compelled to speak about one speaker in particular that Tamara mentioned in her post to this group.

Tamara noted that Dr. Philip Strain has been invited to speak at this conference. I think it is important that members of this discussion group know — in advance of this Government conference — that Dr. Strain in fact acted as an expert witness for the BC Government against families in the Auton case.

BC Attorney General lawyers used Dr. Strain’s testimony in their effort to defeat the class action lawsuit launched by families of children with autism seeking access to universally funded, medically necessary treatment. Regrettably, Dr. Strain weighed in on Government’s side, in this long and difficult legal struggle for our children.

For those of you who were not in the autism world at the time the Auton case was launched in BC Supreme Court (1998), you should know the families involved in the case originally asked to be certified as a class so that every child would hopefully benefit from a win and receive publicly funded autism treatment that is effective and science-based. It is an undeniable, documented fact that Dr. Strain’s affidavit testimony was used by Government lawyers against our families’ effort to be certified as a class in the Auton case. Dr. Strain’s affidavit is replete with references regarding how ‘different’ every child is and that somehow this justifies Government denial of publicly funded Lovaas Treatment to children whose physician prescribes medically necessary autism treatment, and whose parents request it. Whether or not the Judge was influenced by Dr. Strain’s affidavit is difficult to gauge. However, the fact remains that BC Supreme Court unfortunately did not certify our families as a class in what was arguably a very close call.

In short, this lecturer at the upcoming Government conference actually acted as an expert witness for Government! Therefore — de facto – this autism academic has a clear track record of supporting the BC Government in its ongoing defense of discriminatory and morally bankrupt autism policies (whether or not he actually knew B.C. was an autism treatment free zone at the time of his testimony).

It is also important to brief everyone in this group regarding another historical tidbit relating to Dr. Strain: the LEAP Preschool is Dr. Strain’s brainchild; it was imported into BC from the U.S., where Dr. Strain developed the model. For several years, many of you have complained to FEAT BC about how your child did not benefit from LEAP Preschool. If Dr. Strain had his way, I suspect LEAP Preschool would be one of his early intervention programs of choice in this province.

Since one of my responsibilities is to pull back the curtain on Government’s “Wizard of OZ”, I want everyone to know about this lecturer’s longstanding (from at least 1998), cozy relationship with the Government of B.C., before you take his comments as purportedly unbiased, disinterested information. For those of you who choose to attend the Autism 2002 conference — despite government’s imposition of age discrimination in providing conference-cost subsidy only for kids six and under — please put on your critical thinking caps when listening to speakers at this conference since this is much more than a disinterested, academic exercise.

Once again, the unfortunate, long-standing BC tradition of an incestuous relationship between Government and its academics is at play at the Autism 2002 conference. Government’s Orwellian, glossed-over autism policy still sees that unqualified MCFD social services bureaucrats are firmly in charge over our kids; they hand pick the academics you are going to hear, yet impudently extol that all is superb and unbiased. In the vernacular, this simply does not pass the smell test.

Regards,

Sabrina
_______________________
Sabrina Freeman, Ph.D.
FEAT of BC
skfreeman@featbc.org

[Deleted User]

Hey Avery…

kind intentions they were my friend
pls contact me privately , I do not have your email addy
pls contact me at aba4u@earthlink.net
hope to hear from you soon
norrah

[Maureen St. Cyr]

Hi Norrah:

Thanks for the kind words….er, I think ;-)

One thing I want to remind you about, though it probably needs no reminding:

As I read the news out of Ontario, I always have a strangely uncomfortable mixed feeling of joy and dread — joy that you and your group are doing such a great job fighting for the rights of "our kids" in Ontario, but dread at the fact that some of it just has that unmistakable and ugly feeling of deja vu. In the last years of NDP dictatorship over British Columbia, the opposition Liberals went to great lengths to support our cause. Many of us had great hope that their indefatigable fervor in our cause meant a Liberal victory at the polls would also mean victory for the rights of our children. We all know now that was not to be the case. In opposition they were outraged about the government appeal of our triumph in BC Supreme Court. In government, they continue the appeal most vigorously. In opposition, member after member stood up and went on record demanding medically necessary Lovaas ABA treatment for our children, promising to never cease fighting until it was done. In government, they continue to throw money at discredited so-called "interventions" foisted on desperate parents by the same tired old friends of the NDP in the "autism industry" — that is, when they aren't simply saying "we can't afford it" the same way the NDP did for years. Please be very careful putting too much stock in Ontario opposition NDP members giving you support and promises now — I seem to remember Ontario had an NDP government for a while and I don't remember them jumping to help our children then. I dearly hope I'm wrong, but it's better to be vigilant and prepared and not too overly optimistic.

I wish you all the best and speedy victory for our kids everywhere…

Avery

[Deleted User]

I just wanted to thank Nancy Morrison of Ontario.
Nancy actually organized Monday at Queen's Park in Ontario. Shelley Martel NDP who has come to the aid of my own child on more than one occasion delivered her question to Health Minister Tony Clement with such emotion her voice was shaking, that does not come through in the transcript. Although, Autism treatment is a non partisan issue, I would personally like to thank Shelley for giving the children the opportunity to sit face to face with the party denying universal effective and proven science based ABA treatment.
I would also like to thank Sabrina Freeman. Everything I know, I know because of her. She has not only fought for your children in BC, but she has and IS fighting with us here. Her extensive knowledge of the issues extend beyond provincial boundaries. While we have a long road ahead, it is comforting to know we are now all fighting together for the children.
PS. Avery anytime you want to take on things over here you let me know :-) *&*& disturber
best to all
norrah

[FEAT BC Admin]

Subject: Re: Room Three: Discussions about Government Topics
From: "Paul Darlaston"
To:"FeatBC Discussion Board"

Great story –

I have been trying hard to get the politicians to recognize the problem of funding – and waiting to find the right timing to get the momentum really
rolling!

The Liberals in Ontario (and I am one of them) have been slow to bring this to a head – I hope what Norah has done, plus this demonstration which hopefully got the public's attention at last. I am contacting Michel Gravelle and Gerard Kennedy again today!

I have been lobbying Christina Blizzard at the Toronto Sun to do something positive. She used the circumstances of a family I know with a 13-year old autistic daughter in Ontario to justify the Ontario Education Tax Credit, even though it was a piece of legislation that gave half a billion dollars a year to parents who had other publically funded educational choices, and possibly included up to a maximum of $3,000 per annum for parents of autistic children. Since that tax credit has been deferred at least a year, the tears Christina might have wrung from her readers were wasted. So I told her, OK – so now lobby Brenda Elliott through your column to change the funding formula for children beyond 6 years old, and get Tony Clement to drop the bureacracy surrounding assessments.

With some good luck, and favourable rulings in the B.C. lititgation to help, maybe Ontario can get its act together and fix this problem once and for all (and hopefully before the children that need the programs get them before they are grown up)!

Good luck!

[Isaac]

From the Toronto Star, http://www.thestar.com
**********************************************

Jun. 25, 01:00 EDT

Ending autism therapy `wrong'

Caroline Mallan
Queen's Park Bureau Chief

Ontario's health minister was confronted yesterday by parents of
autistic children who they say are being denied essential medical
services in the form of expensive behavioural therapy.

Tony Clement was confronted outside the Legislature by more than
a dozen parents and their children. They protested the current
policy of funding the Intensive Behavioural Intervention program for
only a small number of autistic children and only up until they reach
age 6.

Norrah Whitney, a Toronto single mother whose 6-year-old son
Luke is autistic, demanded that Clement order the province's health
insurance plan to pay for Luke's treatment, which costs an average
of $60,000 per year, per child.

In January, Whitney filed a complaint with the Ontario Human
Rights Commission arguing that cutting off treatment at age 6 is a
violation of human rights.

Clement said the program, also known as Applied Behaviour
Analysis, is part of the family and children's services ministry and
deferred the issue to Children's Services Minister Brenda Elliott.

Parents say their children's needs are medical and they should be
entitled to the expensive one-on-one therapy regardless of their age,
and that it should be paid for by OHIP.

"Tell my son that he doesn't deserve medically necessary treatment.
You know this is wrong," said Whitney, holding up her son Luke
inches from Clement's face.

Clement said he could not talk about the funding given the matter is
before the courts. "Do not hide behind court cases, these children's
lives are on the line," Whitney said.

The intensive approach involves trained therapists working
one-to-one with a child, reinforcing correct behaviour, language and
academic skills. Children typically require several years of
treatment, but studies show the therapy can produce significant
results — nearly half of autistic children can be taught to function
normally. Most of the other half will show some improvement.

NDP critic Shelley Martel called on Clement in the Legislature to
fund the program for all of the estimated 900 children between the
ages of 2 and 5 who are on a waiting list, in addition to children
who have already turned 6 without ever getting access to the
treatment.

[Author]

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