[FEAT BC Admin]

In this topic area, discussion is on all issues relating to setting up and running a home-based intervention program. Please feel free to bring up any problems or suggestions. Parents can help each other greatly by sharing information and giving suggestions.

In addition to parents helping parents, A.B.A. professionals on in the Discussion Group can also help provide insight and guidance.

Topic

[Monika Lange]

The experience of having one’s child denied medically necessary treatment is supremely painful. I for one will not feel pressured to diminish the unpleasantness of this grand scale injustice for the comfort of others, specifically those who’s apathy has caused my son’s suffering. I, like Stephen Paperman and Barbara Rodrigues, feel the pain every day, and will for the rest of my life as I see my child’s potential limited forever by those in government who do not care. For the sake of our children and our own sense of justice, we will not suffer in silence. I can take no responsibility for protecting the feelings/reputation of those who cause the pain. If misery loves company, I’m happy to make room on the hotseat for the government.

[Barbara Rodrigues]

To Anon:

Isaac is the Administration – this is FEAT's – therefore his forum – he clearly stated that Paperman's post was okay.

As for name calling FEAT – PLEASE – we have heard it all before – don't you think we know what we have been called – what they say about Sabrina and many parents who fight for this medically necessary funding – even now. Years ago when I found FEAT – they were called 'fanatical parents – who treated their kids like robots – When I started doing ABA – the 'experts' here told other parents that they couldn't do that to their children – that it was too structured, too cruel – yet now they happen to be an EIBI service provider!!

People may forget but for years FEAT tried to get Government to listen – they met with the big wigs brought the science to back our treatment options – we have all written thousands of letters/emails – many have been forced to go public to get attention – many have been forced to move to Alberta to get their children treatment.

People still come on this board – our board – and riducule and attack us or try to justify themselves.

Yes people have called us names before Anon but what's worse is these government officials/employees have denied our children funding, treatment, cut off our funding to punish us for court actions taken by FEAT, made us mortagage our homes, cash in our savings and RRSP's, sell our belongings and borrow and beg for help for our children struggling with a horrible neurological disorder.

So we have every right to describe the 'whole' as we see fit -as Stephen Paperman saw fit – our children and their futures wear the scars of this fight.

So stop making this about you and your feelings – this is about our children and what the courts and the medical professionals say our kids deserve -this is about our kids struggles – our kids rights – our kids lives.

If you don't like the way we talk then sign off.

Barbara Rodrigues
Jeremy's Mom & Advocate

[Jenn Ralph]

In response to anonymous Nov 20th 10:21 am:
I don't usually post here and get in these "arguments", but I have got to say, holy cow! Let's once and for all stop trying to defend the history of this government and their "experts"! How many times does Isaac, or Sabrina, or whoever else, take valuable time out of their day to-over and over again-defend what is fact?
Although all opinions are freely expressed on this forum, I have got to say that reading your posts are indeed very tiresome.

[Deleted User]

In response to Isaac’s post about the Paperman post!

Isaac wrote, “First, regarding whether the erman post (Nov. 16, 4:22
PM) does or does not constitute a violation of forum rules
— it doesn't. The post may be spirited, but it's clearly
well within forum rules insofar as it only speaks of
government-funded agencies and, moreover, is devoid of any
personal attack against a member of this forum.”

I am a little confused about this. The FEAT chat board rules clearly state:

“To be a member in good standing, please respect the following:

1) Be courteous to each other. We ask you to refrain from abusive language, insults and profanity (swearing).

2) Personal attacks are not permissible in the FEAT BC Discussion Group. We respect all opinions even if we disagree with them.”

First, rule one was clearly violated as the statements that included “hacks,” “creeps,” “butchers,” “imposters,” and saying, “There is a special hell waiting,” are clearly insults.

Second, I would disagree that the statements were not a personal attach. Mr. Paperman may not have named anyone specifically, but the statement “all these old government hacks,” “these creeps,” “Avoid like the plague anybody who was ever involved with,” “those EIBI butchers,” “There is a special hell waiting for these imposters,” “they'll all be roasting in it,” “their lies,” are directly aimed at “ANYBODY” who ever worked with any of these organizations, which is a personal attack. Mr. Paperman was directly insulting everyone who works for these organizations, but instead of naming each of the employees individually (which he couldn’t do because he doesn’t know them – making these statements even worse), he grouped them together under the words “these, those, they and their!” Words that are plural representations of many individuals! The Feat Rules do not state that personal attacks are attacks at an individual, as apposed to attacks at a group of individuals clumped together!

For example (and I do not mean anything by the following Paragraph), if I were to replace the government organizations with FEAT in Mr. Paperman’s e-mail, many of you will have been offended. I will end my e-mail with an example, as I will presume the example will make many of you angry and you will not attend to what the message says after the example. I will state though, that becoming angry with what the examples says (although I DON NOT mean what I have written) means that I have insulted YOU, and therefore also means that MR. Paperman’s post was a personal attack, as I have only changed who the post is aimed at, not the content of the post. I apologize in advance, but I feel you need to see the other perspective!

The message may have looked like:

[NOT MR. PAPERMAN’S ORIGINAL POST] IF I MAY JUST CALL A SPADE A SPADE HERE, OUR FRIENDS OVER AT A.S. OF B.C. SEEM TO BE DOING THEIR BEST, BUT I HAVE TO SAY THAT FEAT OF BC IS A TOTAL PIECE OF CRAP. THERE ARE LIKE A HALF DOZEN TO A DOZEN OR SO LEGITIMATE PEOPLE WHO ACTUALLY CARE ABOUT THEIR KIDS, AND THEN THERE ARE ALL THESE OLD FEAT HACKS. IT REALLY BURNS ME TO SEE THESE CREEPS WHO ARE SUDDENLY TRYING TO PRETEND TO BE GOOD PARENTS. MY PERSONAL SUGGESTION FOR ALL NEW PARENTS IS TO TAKE FEAT WITH A GIGANTIC CUBE OF SALT. EMAIL A LONGSTANDING PARENT OR FOUR AND ASK WHAT SUPPORT THEY SHOULD USE, HAVE USED, AND ARE/WERE HAPPY WITH. AVOID LIKE THE PLAGUE ANYBODY WHO WAS EVER INVOLVED WITH THOSE FEAT BUTCHERS. THERE IS A SPECIAL HELL WAITING FOR THESE IMPOSTERS WHO HARM OUT CHILDREN BY KEEPING THEM FROM ACCESSING LEGITIMATE SERVICES. SOONER OR LATER, THEY'LL ALL BE ROASTING IN IT. IN THE MEANTIME, DON'T GET CAUGHT BY THEIR LIES AND IMPERSONATIONS. [NOT MR. PAPERMAN’S ORIGINAL POST]

Again I apologize if I have offended, but I also hope the point is made!

[Isaac]

A couple of points I would like to address today in response to recent posts on the discussion board.

First, regarding whether the Paperman post (Nov. 16, 4:22 PM) does or does not constitute a violation of forum rules — it doesn't. The post may be spirited, but it's clearly well within forum rules insofar as it only speaks of government-funded agencies and, moreover, is devoid of any personal attack against a member of this forum.

To address the question by Anon-Nov.16, 10:PM … the query being, "What is the difference between an ABA trained therapist and an EIBI one?"

Well, first we need to define what we mean by "ABA trained therapist." When parents ask for an ABA interventionist for their child, what they really mean is they want a Lovass-style ABA therapist. The vast majority uses the shorthand term "ABA" to refer to Lovass-style ABA. Dr. Lovaas (Psychologist of UCLA), represents the headwaters from whence the real science behind autism treatment flows. Lovaas is the pioneer who took many of the proven, component parts of well established ABA principles, put them together and developed the groundbreaking, comprehensive treatment protocol for autism referred to as Lovaas Autism Treatment in the BC Supreme Court judgments. This autism treatment is yet to be equaled for efficacy in the scientific literature. For anyone who claims their treatment protocol is science-based, or effective ABA, the mantra needs to be, "show me the data." If the bona fide science isn't there, then it's not the real deal, even if the method may use some components from the very broad field of ABA … and may have someone with a Ph.D., nice suit and a smooth talk advocating the method.

When parents say, "I want ABA" for my child, they don't want pseudo-science simply because hearsay and parental reporting says some treatment or other is terrific. Parents want the GENUINE science BC courts have ruled is uniquely effective in ameliorating the debilitating disorder of autism – and that's Lovaas-style ABA, otherwise known as EIBI, or Intensive Behavioural Intervention. All this brings us back to Anon's 11/16/03 question: "What is the difference between … ABA … and EIBI …"

The short answer is ABA is 'real' and the BC government program called 'EIBI' was only strategically labeled as such to defeat a court case. Stated simply, government's 'EIBI' is a patently fraudulent, so called autism treatment program, created by cynical bureaucrats to defeat children in the Auton case. It would be wonderful if this were only hyperbole on a chat board post, but sadly, it isn't. To be technical — and perhaps more polite — government's so-called 'EIBI' program fails to meet the criteria for medically necessary treatment ordered by the judge in the Auton case and affirmed by the BC Court of Appeal. A straightforward case-in-point is this: transcripts from BC's preliminary EIBI government hearings (in preparation for government's "remedy" in the Auton case) suggest a grandmother can deliver Early Intensive Beahavioural Intervention. It sounds ludicrous, but this is the kind of bankrupt government system parents of children with autism are up against.

A brief history for those who may be new to the autism wars in BC: when government lost the Auton case in July 2000, the court ordered that government fully fund genuine EIBI for children with autism i.e., Lovaas-style autism treatment. What Government did instead is create a fraudulent program that simply carried the nameplate 'EIBI' … a Volkswagen Beetle with a Jaguar moniker is still a Beetle. In fact, government's 'EIBI' is a rehashed smorgasbord of what was discredited in court and has no resemblance to what the judge ordered for our kids.

Government's EIBI program is also age-limited (kids under age 6) and only accessed through government diagnostic gatekeepers (Sunny hill, etc.) rather than private practice health care professionals (as in all other publicly funded Medicare treatments). Only immensely arrogant MCFD bureaucrats could pull off this kind of big lie in BC Supreme Court — but they have, at least in the short run. The result now is that the only place on the planet where 'EIBI' does not mean real EIBI (A.K.A. Lovaas Treatment) is in British Columbia. Welcome to George Orwell's version of 'EIBI,' where the lie is presented as truth by your BC civil servants.

To sum up, anyone who has been trained by, or works for the government-run 'EIBI' program, should not in any way be deemed a bona fide autism treatment professional in terms of what the BC Supreme Court ruled is medically necessary treatment for children with autism.

Please be careful … please be suspicious. If they work for government, your child will likely suffer, given the sorry state of current government affairs in this province.

Isaac
(Miki's Dad)

[Barb Allen]

Thank you for answering my 'EIBI' question. I certainly do see the emotion around this issue and I aplogize if I have violated any unspoken rules about what to post.
You did answer my question, and it gives me a starting place.
Thank you again.

[Nancy Walton]

Hi Dee Dee,

Here's my take on things.

A Bona Fide Lovaas consultant is someone who has been properly trained (ample supervision and instruction) by Lovaas himself, or by a descendent of Lovaas. This type of consultant is well versed in Lovaas protocal. Decisions about the programming are based on an indepth understanding of the Lovaas ABA principles.

Why do I chose a Lovaas consultant over a consultant who has some other ABA type protocol? Because it is the Lovaas protocol that has enough scientific research to back it's effectiveness. While my consultant may incorporate non-Lovaas influences into my childs program, she does so with sites on the big picture…how will this affect his overall behavior? These decisions are made based on her experience and training in Lovaas ABA.

In short: A consultant should have a Lovaas foundation of principles, upon which he or she can continue to expand his or her repetoire of techniques.

That is just my opinion. Anyone else, feel free to jump in or correct my understanding.

Nancy Walton

[Deleted User]

To the EIBI question asker,

Sorry about the delay in responding to you. It is difficult to explain how frustrated we are sometimes. I must post anonymously because the government collected a file one inch thick of everything I have said in TV, radio, newspaper and internet in order to intimidate me. It is no wonder we are paranoid sounding. Your post is just asking for someone to "break the feat rules". I'll try to answer calmly.

EIBI? I once again refer back to what everyone keeps saying. Check training, experience and references. It has been 2 years since the government offered the $60,000 per year EIBI program to my child. I asked my social worker for the ABA qualification of the people running the EIBI program. She couldn't tell me. I went to a meeting for EIBI parents and asked the question. The supervisor told me she had NO training in ABA, but that Dr. Kysella would be overseeing the ABA portion of their program (what other portion there could possibly be is beyond me). But Dr. Kysella also could not tell me where he got his training in ABA. He said he was a pioneer like Dr. Lovaas. So I looked up his research and there was none done with autistic children. (feel free to do a search for research by Kysella on the internet)

Things may have changed in the last couple of years, so check for your self. Ask for training and/or education background. Working for a year as a line therapist DOES NOT train someone to be a consultant. DOES NOT train someone to make programing decisions.

If you were to train under EIBI, I would not let you near my child even if it was offered for free (over me having to pay for my childs current program).

If you really want to make a difference in autistic children's lives, go to the Early Autism Project or contact Sabrina to find out what universities offer ABA Masters degrees (with practical ABA experience, supervised by professionals taught by Lovaas or descendent of Lovaas)

EIBI pays more initially, but short term gain will result in long term pain….not just for you but for others.

[Deleted User]

Hello, I am the person who asked the simple question regarding what is the difference bewteen an ABA therapist and an EIBI therapist in terms of training.

I am wanting to, perhaps, make a career change from school support worker to working with children with autism and I would really appreciate it if someone could explain the differences in the two types of therapists. My goal is to one day work as a behavioural consultant and to make the best choices to move towards that goal I need information – I had thought that this would be a wonderful source, to get it from straight from those who have first hand knowledge.

Perhaps someone can suggest where else I might try. Is it not clear cut? Is there separate, distinct training involved for each?

any direction would be appreciated.

[Barbara Rodrigues]

To Anon in regards to Stephen calling persons hacks, etc.

While I do not run the rules and I am sure the Administration or Sabrina will step in where needed – Stephen did not personally attack anyone – he globally made a statement – one that many parents whose children have been harmed by these so-called experts will agree with. WE HAVE ALWAYS BEEN FREE TO EXPRESS OUR OPINIONS AS LONG AS WE DO NOT PERSONALLY NAME NOR SLANDER INDIVIDUALS (this is my understanding). We as parents are certainly not going to sit here and not say what we feel nor think about certain groups. Stephen did not personalize nor point out any one person nor did he name a specific name so I see no offence, but then again I don't run this board so it's not up to me or you anon to decide those things.

Stephen was trying passionately to save new parents from the horrors and lost years that some of our children have been through at the hands of these so-called experts. I see only goodness in that.

Barbara Rodrigues
Jeremy's Mom and Advocate

[Author]

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