[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

[Linda Cucek]

Our children now will begin to see the light at the end of the tunnel, we still have lots of work to do to make sure the promise is kept by the Liberal Party, but now our children can go forward with a new light and glimmer of hope and so we set a new trail blaze to win the treatment for all our children "Lovaas. I am thrilled of the new government.

Freedom is near for our families and children…

James mom Linda Cucek

[Maureen St. Cyr]

DAMN THIS FEELS GOOD.

I am thrilled the NDP bastards are decimated.

I am thrilled to have heard Gordon Campbell reavow
his committment to his promises — since he promised
on more than one occasion to do the right thing for
our children.

I am thrilled to be seeing some light at the end of the
dark cold tunnel for my beautiful Ariel's battle against
the forces of evil.

I am thrilled for us all. It has been too too long.

Avery

[Deleted User]

Free at last … free at last … free at last !!!

[Barbara Rodrigues]

RE: GATEWAY/SENSORY INTEGRATION

While I simply can not top the what has been said by Avery or Sabrina, I must add to the comments of this subject.

For you see, our son was subjected to more than 2 years of wasted time in which the OSNS Child Development Centre used the inadequate, useless or entirely waste of time so-called 'therapy' classed as sensory integration, Theraplay (based on sensory integration) speech therapy and music therapy, preschool therapy – all without any ABA components. So I too KNOW first hand how these 'eclectic therapies' work and they don't. My husband and I sat and watched our son get progressively worse and learn nothing! His stimulatory and aggressive behaviors increased and his language and social skills decreased.

When we finally found out about ABA (thanks to BCTV and FEAT for doing a news story on it in 1997) these so-called professionals who so want to help these kids – became defensive, upset and down right hostile at my demand for science-based autism treatment. They in fact, had already known about it but choose to with hold the information because they 'didn't like' ABA. Which is quite hilarious as now there is money attached to it, they are one of the P-Card programs.

As for these services being nothing more than baby-sitting services, that's what they are. They just wasted my child's time and the Government's money with inadequate, untrained, unqualified workers – who now that I look back I would never have personally hired for an ABA aide – none of them had the energy or the intelligence.

Everytime I hear the mention of sensory integration therapy I feel I must respond as my son was hurt by this therapy, delayed years of proper intervention because of this useless therapy.

ABA has worked for Jeremy. We have data and Jeremy himself to prove it. We can see the progression and measure it. The very first workshop we had we were able to start teaching Jeremy. Now, we can analysis behaviors, do the proper follow through and have a very different little boy than we did. We have a child who academically is age appropriate. A child who is happy, capable and no longer engages in nonstop tantrums and self injurious behaviors.

As for the diet, well that's also subjective. If they come up with science based articles on that I will read them absolutely. In the meantime here's some food for thought on why researchers don't use parent's opinions.

A study for a 'tourette's' drug for kids was to be done. It was a double blind study in which the participants would take the drug for one week and then one week off and so forth. Anyway, after one week, two of the parents dropped out. One because the drug had such amazing results they felt they didn't need it anymore for their son, the other because they said the side effects of the drug were so horrendous that they didn't want their son on it.

When the double blind study was revealed, neither child had been given the drug…..

Barbara
Jeremy's Mom

[Sabrina Freeman]

RE: Rob Vanspronsen post of May 13, 2001: Direct link at https://www.featbc.org/chat/messages/4/4.html?SundayMay1320010538pm#POST54
___________________________________________________________

I want to thank Rob Vanspronsen for his post in the General Topics room regarding Giant Steps and would like to take this opportunity to reply.

First, I have to reaffirm that the FEAT BC discussion board is designed to share information relating to Lovaas-type ABA, and issues surrounding this topic; it is not a general autism board and is not maintained and supported to debate other therapies and service providers who do not provide intensive behavioural interventions — there are many other Internet venues for that. However, given that the Giant Steps issue has been raised in relation to an interview on CKNW’s Bill Good program regarding government's critically flawed, so-called ‘EIBI’ program, I am compelled to address the many important issues raised in Rob’s posting so we can all set the record straight.

1) FEAT BC is a *grass roots* movement which has many members who are at times outspoken about the ongoing dispute with the BC Government and occasionally — and independently — choose to speak to the media on this very important issue This is a laudable initiative and is what occurred on the recent Bill Good show; we all thank Debra Antifaev and Bill Rice, who very eloquently addressed the many issues surrounding the long running autism treatment controversy in this province. I am sure the majority of FEAT BC members agree with the message Debra and Bill delivered regarding the government funded autism services industry in general, and the Giant Steps organization in particular.

2) Giant Steps:
FEAT BC has much respect for the parents who worked so very hard to create an alternative to the abysmal, ineffective generic services government supposedly offers to children with autism. Sadly, Giant Steps parents — working as hard as they have — have not let science be their guide. Some key points everyone needs to know about Giant Steps:

a) they were thoroughly discredited in the Auton case (Auton, July 2000). In the ‘Reasons for Judgment’, BC Supreme Court states:

[Par. 64] *Giant Steps has a day care license and provides services for approximately 15 children ages 5-12. It is partially funded by MCF and MOE. It offers "speech and occupational therapy, music pre-academic programmes, self-care skill training and community experiences." Dr. Jill Calder, a medical doctor and mother of an autistic child, described the main component of the treatment offered by Giant Steps as "a sensory-integrative approach." Wanda Bent, the Program Director for Giant Steps, agreed that the programme includes no applied behavioral therapy. NO APPLIED BEHAVIOURAL ANALYSIS* (emphasis added).

[Par. 64] *Dr. Frank Gresham [BC Government’s lead expert witness against families in the Auton case] agreed that facilitated communication, auditory integration training, and sensory integration training are controversial treatments that have little or no empirical support and show no benefit to autistic children. He also agreed that ineffective treatments for autism may be harmful if they supplant effective treatments that might have been utilized. He expressed the opinion that BC government funded programmes such as LEAP were not well established and they were probably not efficacious treatments for autism*

[Par. 66] *It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodology; they are positively discredited by one of the Crown's own expert witnesses." Auton vs. A.G.B.C. July 2000 Reasons for Judgment*

Other key points everyone should keep in mind about Giant Steps:

b) Giant Steps receives money under contract for the government from the Ministry of Education and Ministry for Children and Families.

c) The head of Giant Steps, Ms. Wanda Bent, submitted an affidavit in BC Supreme Court on behalf of government in support of Attorney General lawyers working to defend government in court against the families of children with autism. In the realm of *divisiveness* in the autism community, it is Giant Steps that apparently fired the first shot against families with their support of the BC government in BC Supreme Court. Uncomfortable as this history may be for Giant Steps, the facts remain irrefutable.

d) One of the major components of Giant Steps is a therapy called Sensory Integration. Not only did the GOVERNMENT’S key expert witness in court [Frank Gresham] discredit Sensory Integration as a treatment for autism, but so does the New York State Department of Health.

This is what New York health experts say about Sensory Integration: "Sensory integration is sometimes used as an intervention for children with autism. There is currently no adequate scientific evidence (based on controlled studies using generally accepted scientific methodology) that demonstrates the effectiveness of sensory integration for young children with autism. Therefore, the use of this method cannot be recommended as a primary intervention method for young children with autism." IV-60.

e) Rob states in his posting: "In fact, many of the principles of ABA are utilized by the Giant Steps program …". Court testimony of Giant Steps’ Head, Wanda Bent — while under oath — is at odds with this contention.

During the court case, Ms. Wanda Bent was on the stand under cross-examination and the lawyer acting for families asked her whether the principles of ABA were used in the Giant Steps programme. Again, under oath, she said *NO*. If indeed the principles of ABA are now being incorporated into the program, that is very good news and we welcome more information regarding this change in policy, as well as adequate supporting documentation. However, I must reiterate that Sensory Integration has NO science behind it — it is a purely experimental *therapy*. Consequently, FEAT BC does not at this time endorse this intervention for autism.

f) FEAT BC has conducted extensive data base research in Medline, Psycinfo and Eric, looking for scientific studies with outcome data on Giant Steps. To date, we have found one (1) article which describes the program in Boston. Even this article admits they have collected NO data as of yet on children in the Giant Steps program.

g) *Diet Therapy* and Giant Steps.

Here again, the Giant Steps school is offering what is widely regarded as a fringe treatment for autism, with no legitimate science to support it. The New York State Department of Health says the following about diet therapy:
"(1) The use of special diets that eliminate milk-products, gluten products, or other specific foods from the diet is not recommended for the treatment of autism in children.
(2) If food allergies are documented in a child using standard allergy testing methods, then appropriate dietary changes or other treatment may be needed, but this would be unrelated to the child’s autism.
(3) Allergy testing (using either intradermal testing or blood tests for specific antibodies) provides no information that is either helpful in determining appropriate treatment for autism or useful for predicting or measuring functional outcomes for children with autism." IV-104

3) Science and Religion — there IS a big difference

Rob’s posting contains the following remark relating to the *baby sitting* discussion on CKNW’s Bill Good program. Rob states, "It also smacks of a 'there is only one God and that God is/ Allah" mentality."

There is a very big difference between a belief in monotheism (the predominant belief system of not only Muslims, but also Christians and Jews) and belief in science. Although this is not the forum for a philosophical discussion on religion versus science, this point needs to be made. In religion, belief is central and evidence is not required or desired. One either believes, questions, or does not believe. Science however, is very different. Scientists attempt to avoid making assumptions, as much as possible, and are interested in evidence. Bona fide scientists in the field of autism are concerned with a very central question, which is: Does A cause B. In other words, does treatment (A) ameliorate condition (B), autism. Scientists go about designing experiments to answer that question. They design experiments in such a way that the only *belief* one needs is a belief that science will move us toward *truth*. This is central to the way Western medicine progresses, particularly in the 21st century. It’s entirely inappropriate to equate FEAT BC’s strong support for science-based, Lovaas-type ABA — what BC Supreme Court terms *uniquely effective — with religious zealotry. In the vernacular, this accusation is WAY out of line.

FEAT BC endorses evidence-based treatments, not treatments based on belief, anecdotes or testimonials. A science vacuum is very dangerous since it allows unqualified, financially motivated service providers to prey upon parents who are not science savvy, especially when it is government *selling* the fraud through their contracted service providers.

4) Divisiveness in the Autism Community

Rob accuses Bill Good’s guests of the following:

"I think this kind of attitude puts a stain on the integrity of the FEAT group, and on the autism community in general. Please let's work together, not fight amongst ourselves."

I understand the impassioned plea to work together; however, this is not always practical or possible for the following reasons:

a) people with their snouts in the government trough have a difficult time telling the truth — it is not in their best interest. The autism services industry in BC, collectively are recipients of multi-million dollar government contracts. In fact, even the Autism Society of B.C. — a parent group ostensibly there to help parents — receives more than $335,000 per year from the Ministry for Children and Families and has referred to themselves as a *resource for the Ministry for Children and Families*. Unfortunately, money has a tendency to co-opt organizations, no matter how well intentioned its founders may have been.

How can these organizations and service providers tell the truth if this puts their government funding in jeopardy? In fact, in order to keep those government contracts coming, members of the autism services industry –when asked in MCF’s time of need — had little choice but to answer government’s call to arms in the court battle to defeat families … families who were merely seeking Medicare access to effective treatment for their very ill children. Giant Steps’ participation in the NDP Government’s war on our disabled children is quite a shameful episode in BC autism history.

For the record, Rob — and all FEAT BC members really need to remember this fact — organizations by the name of Gateway, Laurel Group, CBI, LEAP Preschool and yes, Giant Steps … each and every one of them made affidavit submissions when asked by BC Government lawyers to support the NDP battle against our families in the BC Supreme Court Auton case.

Those facts do not make an honorable entry in the resume. In fact, it’s complicity of contracted service providers in the NDP’s war on autistic children that genuinely puts a *stain on the integrity of … the autism community in general*. I submit that the darkest chapter in BC autism history is the fact that contracted service providers — including Giant Steps — chose to fight shoulder to shoulder with NDP government lawyers against families in BC Supreme Court. THAT is what truly makes for a divisive autism community — allegiance to government money rather than our children. It most certainly isn’t Debra’s honest description and exposure of government sponsored corruption on the Bill Good program.

The truth is that these special needs contractees, all HAD to give evidence on behalf of government to convince BC Supreme Court that *things are working well* … because government, their funding source … asked them to. Fortunately, the courts rely on evidence and discounted all of them as ineffective in treating autism.

5) *The Earth is Round*
It's about time that *Flat Earth Societies* took a look at what they are selling, evaluated the data and realized the earth is, in fact, round. Eventually the truth comes out — even if it needs to come out in court. If you do not want divisiveness amongst autism groups and providers, my suggestion is let science be your guide and we will all be fighting for the same thing: effective, science-based treatment for children with autism!

Just my two cents.

Sabrina
(Miki's mom)

[Isaac]

CKNW's *Bill Good* program discussed the autism treatment controversy today with two parents of children with autism, Bill Rice and Debora Antifaev (05/07/01). The interview focuses on government's inadequate response to the landmark BC Supreme Court decision regarding medically necessary autism treatment (Auton, July 2000).

Many thanks to Bill and Debora for representing our children so well today!

For anyone unable to tune in to the program, or for those out of broadcast range, this worthwhile clip is available at the CKNW archive for 5 days. The address is http://audiovault.cknw.com/ram/d1-13.ram (Bill Good segment, 1PM to 2PM, 05/07/01).

Isaac
Miki*s Dad

[Isaac]

This weeks*s issue of the Georgia Straight is worth a read … page 13 *Election Has Big Impact on Less Fortunate*.

This commentary by the Straight*s Charlie Smith, spotlights the dichotomy of governments*s claim to a *social conscience* versus it*s abysmal failure of children with autism.

Highlights from the article:

NDP candidate, Alicia Barsallo (Glen Clark*s old riding, Vancouver-Kingsway) believes her party is best suited to upholding *basic values like humanity*

Relevant to folks concerned about government*s fraudulent autism program known as EIBI (formerly known as P-CARD, expending $213,333 per child for ineffective services): Liberal finance critic, Gary Farrel-Collins, states, *One of the things we will do as soon as we*re elected … is a core review … we want to go through each and every program and try to find out if the money is being spent properly, to find out if it*s the right program, and if we can do it a better way.*

The article goes on the state, *The NDP government has come under intense criticism for services to autistic children.*

The rest of the article can be downloaded at: https://featbc.org/downloads/straight_05_03_01.pdf

Isaac
Miki*s Dad

[Isaac]

For those interested in government ‘s so-called “EIBI” autism project (formerly known as ‘P-CARD’), Jean Lewis, FEAT BC Director, delivers an incisive discussion regarding government’s ‘made-for-court’ solution to the autism controversy. The interview can be heard on CBC radio’s ‘Daybreak’, aired a few weeks ago, available at this address: https://www.featbc.org/the_media/

[Barbara Rodrigues]

Hi Everyone:

I have emailed our Liberal MLA (he will be new as they redid the boundaries in the Okanagan) He hasn't yet responded. I also emailed the Liberal campaign office directly. Below is their response.

Thanks for your letter to the BC Liberal Campaign 2001 office.

Autism is referenced on page 26 of our platform document, albeit briefly. We have been in touch with FEAT and assured them that we agree that autism is a medical condition requiring medical intervention and that government has a responsibility to fund effective treatment.

Parents need to have treatment choices for children with autism such as infant development programs, speech and language services, applied behavioral analysis, occupational therapy, physiotherapy and other interventions, which have been found to be effective.

We support early intervention services with respect to children birth to six years. And, it is our intention to work directly with parents to accomplish what needs to be done.

If you have any other questions, please let us know.

Sincerely,
BC Liberal Campaign 2001

I have emailed back asking about intensive services for those kids 6 years and over. Will post that response when it arrives.

[Deleted User]

Good afternoon all.
By way of introduction as I'm new to the boards, my name is Stuart Cadwallader and I am the proud father of a six year old boy with Autism.
As mentioned in Linda's post, I am endeavoring to make available to all interested and involved parents of children with autism, the Liberal candidates for the Tri-cities area so that they can answer our questions directly.
As an aside I am not affiliated with any political or umbrella organization but am simply acting in the best interests of my child, and hopefully your own.
To this end, the Candidates and/or their campaign managers for Burquitlam (Richard Stewart), Westwood-Port Moody (Christy Clark), and Port Coquitlam (Karn Manhas) have been provided with a brief of documents related to our concerns and have made the assurance that they are willing to answer ALL questions related to the intended provision of services when they become our next government. This is an opportunity that we, as parents MUST NOT pass up as their interest level and availability assuredly will not be as high once they are in Victoria with the election past.
The meeting as mentioned by Linda will be held at the Old Orchard Hall, 646 Bentley Rd., Port Moody on Sunday May 6 (7 PM). It is an open meeting, and
I have contacted ASBC/Simon Fraser Society/Now Newspaper/Shaw Cable etc to attempt to provide as much notice to as many families as possible.

As responsible parents, and to ensure responsible participation I would ask all readers to contact the listed MLA's and media outlets themselves so that they can get an idea as to the level of our
voice and not ignore us as yet another small-time special interest group.

Richard Stewart's Office 939-8293
Karn Manhas…………..941-8882
Christy Clark…………461-0097
Shaw Cable/George Laknee (Prod. Mgr)..431-1090
Coquitlam NOW Newspaper……………942-4192

If you have any questions you can reach me at 464-2119.

Stuart Cadwallader
Nathan's Dad.

[Author]

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