[Stephen Paperman]

Deb, your logic is entirely sound as far as I am concerned. I do not buy any coverage from WCB and my home insurance covers any liability of mine on my property, including people who are DOING work in my home. I have always been under the impression that WCB is only for workers, not for the self-employed, but if they are selling some kind of extra liability insurance that does NOT affect the status of your relationship, that could be useful for people who don't have home insurance with sufficient liability coverage.

Perhaps I sound like a broken record, but I believe in speaking with professionals when I have these kinds of questions. For legal matters, I consult my lawyer. For medical questions, I go to my doctor. For autism questions I go to my ABA consultant. For insurance matters, I would talk to an insurance broker.

[Stephen Paperman]

To the new parents:

YOU ARE NOT EMPLOYERS SO DON'T LET THE GOVERNMENT TALK YOU INTO BECOMING EMPLOYERS. YOU DO NOT HAVE TO COLLECT OR REMIT CPP. YOU DO NOT HAVE TO COLLECT OR REMIT UIC. YOU DO NOT HAVE TO COLLECT OR REMIT OR DEAL WITH WCB.

Think of it this way, people: When you go to the doctor, is he your employee? No? How about psychologists? Physios? Nurses? You see where this is going, don't you? Your therapists and consultants are professionals. They are self-employed. They are selling you their services, just as they sell their services to other families. They should invoice you every month (or whatever period you agree to with them) for the total of those services, and you should write them a cheque and get a receipt for the payment.

There is NO advantage and MANY disadvantages for turning these people into your "employees," both to you and to them, and the only people whose interests it serves are the evildoers in the BC government, the same people who are still fighting tooth and nail to not give you a dime. NEVER forget that the pitiful excuses for funding that exist ONLY exist because of Auton. And if — God forbid — Auton is defeated in the Supreme Court of Canada, then that funding will be cut off faster than you can say "lying hypocritical sons of ….."

So NO, you do NOT have to do a "payroll." NO, you do NOT have to withhold taxes or contribute to benefits. All you have to do is take in invoices, write cheques, collect receipts, and file them with the government bureaucrats as proof you are spending the money on "approved" expenses.

If you don't want to believe me, visit any reputable accountant and explain the situation and ask him or her. The government details are irrelevant — simply explain that you are hiring therapists and consultants, tell the accountant about their services, and be sure to explain that these people do not exclusively work with your child — that they also work with other children in other families that have nothing to do with you and yours.

Last Paperman rule of the day — take it or leave it:

If the government tells you something, whether that be in the person of a social worker, regional manager or any other such bureaucrat, assume the truth lies in a 180-degree direction away from the statement, and then phone Jean or Sabrina and find out the truth. This technique has already saved my family from disaster on several occasions. By the way, Jean and Sabrina, if you're out there, thank you. And my apologies if I just increased your voice mails in need of return.

S.

[Stephen Paperman]

I very much doubt they will print it, but I sent my answer to the Globe and Mail. I am sorry people, but this kind of crap just makes me sick.

—————-
To the Globe and Mail:

I read with sadness the continuing efforts of one misguided woman to help the governments justify the continued violation of the constitutional rights of Canadian children with autism. I don’t know what disorder Michelle Dawson suffers from, but it is clearly not the same autism my daughter suffers. My daughter cannot send letters to the Globe and Mail or stand up and insult my efforts to help her to the Supreme Court of Canada. Without the medically-necessary Lovaas-ABA therapy she receives, my daughter would still be sitting in the corner, rocking, banging her head against the wall, ignoring the world, needing to be fed, bathed, cleaned, and guarded against the real chance she could do herself or others real physical harm. Instead, with her medically-necessary Lovaas-ABA therapy, my daughter goes to school, has friends who love her, feeds and clothes and bathes herself, and after a long hard struggle, is finally learning to speak. With Lovaas, my daughter has a life. Without it, she did not. To imply, as the Michelle Dawsons of the world do, that you can compare Lovaas-ABA and true autism with deafness and cochlear implants, is a grave insult to both the true autism sufferer and to the hearing impaired. To the true autistic, the choice is quite simply between proper medically necessary Lovaas-ABA treatment, and a life of imprisonment inside the walls of the devastating condition that is autism.

[Stephen Paperman]

Posting this for a friend, but I agree with the sentiments…

——-

The Autism Society of BC is having their annual general meeting this Saturday, September 18th, from 10 a.m. to 12 noon, at the Charles Rummel Community Centre at 3630 Lozells Avenue in Burnaby.

The current board of directors has done a lot of hard work in the last few years on behalf of all people with autism in the province, and towards making sure ASBC and FEAT work together for all our kids' sakes, young and old. If you are not yet an ASBC member, please become one. If you are already a member, please join us for the AGM this Saturday and show your much-needed support for the board and staff.

If you need a map to locate the Charles Rummel Community Center, please visit

http://www.autismbc.ca/2004%20AGM.html

Thanks very much, and we look forward to seeing you all on Saturday.

[Stephen Paperman]

To Simpson…as me sainted mother used to say, "Right church, wrong pew." We do science-based treatment here. Until Hudolpho's Instant Autism Oil has some data backing, I think you want to take that kind of discussion offline. I understand you really think it has helped, and there is always the chance it has, but until we have the science I think I'll stick to the Lovaas-ABA and forego the "alternative medicine."

Just my two cents, as David Chan would say…

[Stephen Paperman]

Hello, my friends…

I have recently learned of a number of cases where well-intentioned therapists have taken programs from one team and "transplanted" them to other teams on which they are working. In some cases, this is the result of teams operating without a lot of qualified consultant input, either because parents still can't afford proper treatment programs in the light of the BC Government's continuing refusal to obey the orders of the courts, or because they just can't get a qualified consultant's time yet.

I totally understand and empathize with the need for speed. We see our kids slipping away, day by day, and we want to get their medically necessary treatment going NOW. I've been there, believe me. But trying to use a program designed for one child on a totally different child is ill-advised and in fact dangerous. Despite the BC government's attempts to turn social service agencies into medical treatment professionals, a proper Lovaas-ABA program is individual to the child, and must be designed for that child alone. Sometimes a program may look similar from one child to another, just as to a certain extent all casts for broken bones are similar, but looks can be deceiving. Any qualified consultant would be literally horrified to discover a program they had written for one child was being passed around on other teams. They would be horrified in the same way as the paediatrician who learns that a prescription written for one child was instead being given to another. All physicians and all qualified consultants would like to treat as many children as they possibly can, but they recognize that treatment has to be carefully applied after seeing the child and diagnosing the proper course of treatment for that individual child's condition.

It is my understanding that some therapists may have learned this kind of thing while working for BC-government-sponsored programs. Please understand that the BC government has no qualified autism professionals in its official programs. These are the same social service agency imposters that were discredited in the Auton court decisions.

My friends, my fellow parents, junior and senior therapists one and all…please take these words to heart – Don't do it. Don't try to generalize therapy between children. You may have only the best of intentions, but as a good friend of mine reminds me every now and then, the road to hell is paved with good intentions.

Transplanted therapy programs do NEITHER child any good. The child for whom the program is written needs your full attention to carry it out under your consultant's direction. The child for whom the program is NOT written needs his or her individual treatment protocols, not something taken out of someone else's "medicine cabinet."

Yes, we all have the best of intentions, but that's just not good enough for our children. We must have the strength, the fortitude, the courage, and the obstinacy to make sure our children get only the treatment that is medically necessary for each of them, alone – their own, individually designed and professionally delivered Lovaas-ABA program. Don't give your child someone else's medicine. Yes there's a chance it might work, but the odds of doing harm instead are just too great to take the gamble.

Sorry for the length, and thanks for listening,

S.P.

[Stephen Paperman]

Hello gang. I guess we're in another federal election race . I had a thought the other day. I think we should all put together a letter that reads like this:

—————

Dear (Insert Your Name Here):

As a candidate for the position of Member of Parliament, I am dismayed by the existence of a double standard in medical treatment in our country, specifically the exclusion from provincial health plans of the only scientifically-validated treatment for autism, Lovaas-ABA.

If elected to government, I solemnly promise to immediately petition my party's Health Minister to withhold sufficient funds from provincial transfers to cover the cost of Lovaas-ABA treatment for any child who has it prescribed by their medical doctor, until such time as each and every province has included Lovaas-ABA treatment under their medical plan.

If my party's Health Minister refuses to take this action, or if I am elected to opposition, I solemnly promise to immediately draft and table a Private Members Bill to force the specific inclusion of Lovaas-ABA in the National Health Act.

Yours truly,

(name of candidate here)

——————-

Now, if we all take these letters to our campaigning candidates, we can see who's willing to sign on the dotted line. A promise in writing is not only valid, there is now legal precedent which says politicians must keep their promises. In other words, the next time anyone pulls what the BC Liberals did ("Promises? What promises?), we can sue them. I also like the idea of the House of Commons finding itself buried up to the neck in private member's bills.

Just a thought….

[Stephen Paperman]

With all due respect to Iouri, my understanding is that Son-Rise
has no scientific evidence backing it. I also was under the
impression this was not even data driven. If there is any science
behind this program, I'd like to hear it. Forgive me, sir, but your
anecdotal report of your child's progress doesn't help me if you
can't prove scientifically that it's because of this program or
yours.

[Stephen Paperman]

My first reaction to Ms. Fazio's latest posts was to get angry. Attacking Beverly Sharp and Barbara Rodrigues in one week is really just too much for me. I have seen enough of these two women in the news and in the official record to know that few people have ever done as much for the greater good, especially at the expense of their personal needs and the needs of their families. I would dearly love to tear a strip off you, Ms. Fazio, but I will refrain from doing so in the spirit of this board–which is families helping families and not engaging in personal attacks.

Now to the greater issue. It is clear to me that there is a group of families who prefer an unproven field of ABA therapy known as fluency over the scientifically proven field of Lovaas-ABA. And please don't shoot the messenger, these are simply the facts. Lovaas has a wealth of documented scientific evidence to back up its effectiveness in treating autism. Fluency does not. This means, simply and truly, that fluency is an experimental treatment protocol. Until there is scientific evidence–and not single case studies, please, which are useless–then we have anecdotal evidence at best. To those people who wish to treat their children with an unproven protocol, I say, good luck. I recognize that someone has to be out on the bleeding edge testing these things, but I cannot in good conscience let it be my family. If and when the evidence backs fluency, I will re-examine my stand, but for now, I'm perfectly satisfied with Lovaas, thanks very much.

It has been my belief since I joined this organisation that F.E.A.T. of B.C. stands for evidence-backed early treatment, not any treatment begun at an early age. People who want to explore alternative and unproven therapies such as floor time and diets have the Autism Society, which seems to take no stand regarding science or evidence, and just lets everything be thrown against its walls.

So Tammy, I'm sorry, but maybe F.E.A.T. just isn't for you. And if you ever want me or anyone else with an open mind to listen to what you have to say, I suggest you start by citing peer-reviewed articles and research instead of attacking people who have paid their dues, and YOURS, in spades.

[Stephen Paperman]

This just in from the Globe and Mail. You could change a few place names and the story is oh-too-familiar. A positive decision from the Supreme Court can't come too soon, for all our kids' sakes across the country.

————-
Carly's parents vs. the school board

Outside a 'very, very narrow definition of what it is to be a student, there's nothing for you'

By CAROLINE ALPHONSO EDUCATION REPORTER
UPDATED AT 12:07 AM EST Saturday, Jan. 31, 2004

Carly Fleischmann celebrated her ninth birthday last Monday. There was a lot to celebrate: She is learning to play Mary Had a Little Lamb on the piano, she is writing her name, and she can point to symbols in her picture book when she wants a glass of juice or a particular food.

But most importantly, Carly celebrated a judge's ruling just days before her birthday that allows her to keep her special-needs assistant in the classroom — at least for now.

It was yet another battle that she, like other children diagnosed with autism, has had to face to get the support she needs in school.

"If you fall outside a very, very narrow definition of what it is to be a student, there's nothing for you, or you end up rattling too many cages and it's just too much work," said her father, Arthur Fleischmann, president and partner at a Toronto advertising agency. "You have to jump through so many hoops and •••• off so many people to get the job done."

Autism has increased at such a rate that the Autism Society of Canada estimates one in every 286 children in the country is afflicted with some degree of the neurological disorder. Children and adults diagnosed with autism typically have difficulties communicating and socializing with others.

Parents in Toronto and across the province have been fighting to get their children the help they desperately need, a battle that can be a financial and emotional nightmare. Twenty-nine plaintiffs are in court seeking to overturn a provincial policy that halts access to a government-funded autism program after the age of 5. Mr. Fleischmann and his wife, Tammy Starr, are among 15 parents who have launched injunctions to get money for treatment, and 50 human-rights complaints have been filed against Ontario's position on autism funding.

Schools don't understand how to handle autistic kids, and administrators more often than not refuse to let in outside therapists, critics say. Like other parents, the Fleischmann-Starr family barely have enough money to fight for their daughter. Still, Mr. Fleischmann said, "We have stopped being parents and started becoming advocates. You can't just be a parent any more."

Carly, a twin, was diagnosed with severe autism when she was 2. The pretty girl with big brown eyes and bangs reaching down to just below her eyebrows can't speak, yet she's affectionate. She constantly moves around her Toronto home, unable to sit still for long.

On her birthday, she takes a moment to sit at the piano. Three of the piano keys — the ones needed to play Mary Had a Little Lamb — have pictures of an ice cream cone, popcorn and a bag of chips. Her therapist, 23-year-old full-time student Howard Dalal, has a laptop on top of the piano. As each picture flashes on the screen, Carly hits the appropriate key to play the song.

Carly wouldn't learn such skills if her parents weren't pouring thousands of dollars into her treatment, something they say the school board has tried to shut out of the classroom.

A spokeswoman at the Toronto District School Board declined to comment on Carly's case because it is still before the courts.

That case is to determine whether Yifat Barmapov, who has worked with Carly since the 2002 academic year, will stay on as her special-needs assistant while the young girl attends Summit Heights Public School.

A special-needs assistant is employed by the school board to work in a classroom or one-on-one with a particular child. The school board pays the salary of the assistant, but Carly's parents have paid for Ms. Barmapov's continuing training in special methods to help autistic children.

Carly's parents went to court recently to seek a temporary injunction to stop the school board from letting Ms. Barmapov go because she was a temporary employee. Ms. Barmapov was told by the school board that the employment of all temporary employees was being terminated as the board attempted to balance its books.

An Ontario Superior Court judge granted the injunction, however, and Carly's parents have asked the court to rule on whether Ms. Barmapov can stay on permanently. A date has not yet been set for the hearing.

"There can simply be no dispute here but that a change of the person who works essentially one-on-one with Carly Fleischmann on a day-to-day basis will be difficult for her," Madam Justice Jean MacFarland wrote in her decision. "Common sense alone, in my view, would suggest that any change for this child's routine should be carefully planned."

Carly's ordeal is long and complicated, but it speaks volumes about what parents have to go through to get assistance for their autistic children.

At one point, they were told not to bring her back to her neighbourhood school, John Ross Robertson Public School, because it did not allow the use of applied behavioural analysis, the only treatment Carly's parents say works for her.

They had been using ABA since their daughter was 4. It is a system of behaviour modification that uses basic principles of psychology — positive reinforcement, where children "work" for rewards such as candy or toys — to teach autistic children language skills and how to play appropriately.

Carly's parents moved her to a special-needs class at Summit Heights Public School in the fall of 2001. When Carly's special-needs assistant went back to school, Ms. Barmapov was hired by the school board and trained by Carly's parents to use ABA.

But things began to unravel. The teacher at Summit Heights had a change of heart and didn't allow Ms. Barmapov to use ABA in the classroom. Carly was regressing because proper behavioural management was not being applied, her parents said. She was not sleeping at night and did not stop moving for about 18 hours a day. At one point, she flooded the upstairs bathroom.

At her parents' request, Carly was moved into another special-needs classroom at the same school, where she still is now. ABA programming was allowed by the teacher. The transition was difficult, but Carly soon adapted to the more structured atmosphere.

All was going well again. But then in early November of last year, Ms. Barmapov was told by the school principal that she had only a couple more days on the job because she was considered by the union to be a temporary employee.

Mr. Fleischmann and Ms. Starr were concerned because there was no transition in place for Carly if Ms. Barmapov were to leave.

Even the judge noted this in her decision. "It is apparent that the woman who would replace Ms. Barmapov initially was only to be there on a temporary basis in any event and she too would be replaced," she wrote.

Carly's parents are hoping the school board will let Ms. Barmapov stay for as long as their daughter is at Summit Heights, without the need for further court intervention.

"I don't expect the school board with its limited financial resources to be able to provide a private one-on-one program to each kid," Mr. Fleischmann said. "I don't even find that reprehensible. What I find reprehensible is when a parent is actually willing to meet them more than halfway to pay for the training, to pay for the program, to make an integrated program, they put up barriers."

Despite the continuing fight for Carly, Mr. Fleischmann and Ms. Starr try to normalize their lives as much as possible. On Monday, they went out for dinner as a family to celebrate the twins' birthdays.

But the battle is never far from their minds. On any given day, there are at least four cars in the driveway. Each Thursday, Ms. Barmapov meets with Carly's therapist, Mr. Dalal, and a speech pathologist at the house.

"Everything that happens in Carly's life has to be set up for her to succeed at," said Ms. Starr, taking a one-hour break with her husband to chat about their struggles.

Ms. Starr has been diagnosed with cancer. She tries to be there for her other two children, but most of her time is spent fighting for Carly.

"We would rather be doing almost anything else," she said. "This isn't fun.

"For other parents, their kids get up in the morning, they walk them to school, they may have the occasional issue to discuss with the teacher. But that's it," she said. "It's hard enough to have a child like this, and then to have to fight these battles . . ."

[Author]

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