[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Deleted User]

I am replying to Lisa Kobelka.

Our daughter was also diagnosed with a oral-motor apraxia. At age 5 1/2 she had only 3 words which she seldom used.

She was started on an intensive program with an experienced therapist who had 4 years of full time experience with a Lovaas based program from Alberta. (EAP). She now has hundreds of words, (I have lost count).

Our current consultant is not convinced that she had an apraxia in the first place, as how to you know that the child has an apraxia or is simply in need of ABA therapy in order to learn to make the correct sounds.

While my daughter still has difficulty with some sounds, we are still working on it. Does she really have an apraxia? I do not know. She will soon be seeing a SLP who specializes in this type of problem in Seatle for further evaluation. In the meantime she is going full speed ahead in her Fluency Based Training Program.

My recomendation is to start or continue an Intensive Behavioural Intervention program ASAP with a lot of concentration on language, at least 4 hours per day.

The speech path that originally saw our daughter years ago was unable to say that Dominique would ever be able to make half the sounds that she is making now.

In my opinion, while the SLP can help identify problems that can be worked on in your IBI program, but what you really need is an experienced IBI consultant and experienced therpists to impliment your intensive program.

Seeing a SLP once every 4 months will allow for ongoing evaluation of the problem but no opportunity to improve the situation, other than the progress your child would make in the absence of ABA/IBI. Considering the STATS say only 1 in 64 improve without Intensive Behavioural Therapy, it is clear that IBI is badly needed.

Joyce Dassonville GN LLB
Lawyer & Mediator

Address:# 114 – 8532 120th Street
Surrey, British Columbia
V3W 3N5
Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca
Web Page:www.dassonvillelaw.ca

[Deleted User]

I have a 4 year old boy with autism and he also has motor apraxia. Our SLP from Alberta started us on the Prompt method, but we are now looking for someone else with this training either on Vancouver Island or on the Lower Mainland. We only see our SLP about every 4 months, but we need someone who can support us a little more on this. Also, are there any other parents who have children with this condition?

[Maureen St. Cyr]

Nancy has just reminded me of something else, which
concerns some earlier posts around talking to one's social
workers about treatment in the wake of Auton and
Anderson. It's been noted that social workers seem unaware
of these developments, and then advise they are going to
take it up with their supervisors. Both of these statements
may be 100% true on their parts, but they are also part of
the way the entire MCFD bureaucracy operates — delay,
delay, kind words, delay, sympathy, delay, delay…well, you
get the picture. In any dealings with MCFD, you want to be
very clear about your expectations for when you will have
concrete answers to your questions. Generally one week is
ample time for anyone to get back to you. And yes, do
follow up on paper with your understanding of the
conversation and its end results.

Finally, I must take great exception to Joyce's insistence on
the use of the term IBI. Various governments have fallen in
love with this acronym because it contains neither "Lovaas"
nor "ABA" and they can use it to paper over their pitiful
excuses for programs. For example, the Three Little Pigs
with their snouts in the BC trough collecting millions for the
E "IBI" program here. If you ask for "IBI" you are inviting
them to hand you Porky and his friends instead of funding
your proper, medically-necessary, science-based Lovaas-
ABA program. It really doesn't matter whether jurisdictions
in the US or elsewhere are using the term to mean
legitimate treatment — in Canada, and especially here in
BC, "IBI" means hacks, quacks and flaks. Doesn't your child
deserve the very best? LOVAAS-ABA — ASK FOR IT BY
NAME. (grin).

Cheers.

Avery

[Nancy Walton]

I was once on a volleyball team that had two coaches. One was fierce, pushing us to our limits and the other would pick us up and dust us off, give us some soft words and send us back out there to train with the fierce coach. The team often won provincial champianships.

I like to think that we have fierce coaches and soft coaches on this board. Both are necessary to make us winners. Stephen's comments to timid parents are tough to take, but I want to stress that he is giving you the truth. I have never had a feat member not give me the truth.

When I first came to this autism world, I wanted to be nice. I love negotiation and mediation. But three years later, the only thing that ever got me anything for my son was sheer anger and strong willed determination.

If you are a parent, your child needs you to be strong now. You need to confront the social worker, the school personelle, politicians…who ever gets in the way of getting your child the best treatment. (believe me, they will get in the way) If you are tired, take a little rest and then get up, put the boxing gloves back on and get out there.

Hopefully, with the work of feat members, there will be a day when you can rest and focus on your family and your child's treatment.

[Maureen St. Cyr]

Um…thank you Stephen…I think (LOL). Since we're etching
it into the FEAT archives, I believe it's actually a Chinese
proverb, and the translation is more like:

"He who asks a question is a fool for five minutes.
He who does not ask a question remains a fool forever."

What that means to me is simply that sometimes we are
embarrassed to ask questions in public for fear of being
ridiculed for not knowing the answer. But it is far better to
learn the answer than to remain in the dark forever out of
fear.

If there are people out there who are genuinely afraid to
post here because things become heated on occasion,
please jump in anyway. Forgive us for sometimes jumping
to conclusions when you inadvertently hit one of those hot-
button topics ("Gee, what's wrong with Gateway anyhow?").
Realize that some of us have been in the trenches for a lot
of years now, and we rarely get thanked for our trouble. We
have, however, been attacked, denigrated, and slandered
mercilessly in the past.

Joyce, thank you for acknowledging your debt to Auton et
al. You can better show your gratitude, however, by ceasing
your attacks on the people who made Auton possible in the
first place, and by, as Stephen suggested, taking a large
breather. Your good intentions are noted, but at the risk of
repeating my own favorite expression, good intentions are
unfortunately the asphalt on the toll road to hades.

Cheers, all

Avery

[Stephen Paperman]

Where oh where to begin….

1) To everyone: Read Dr. Freeman's posts a few more times. Notice that she treats everyone with dignity and respect, even when those same people are treating her otherwise. Bear in mind as you read that without Sabrina, all of our children would still be in the dark ages, begging for handouts from the provincial government and getting nothing but nice words.

2) To Joyce: Take a breath. Do not post anything for the next 48 hours and carefully consider what you are doing. You are clearly a woman with intelligence, but you are stepping way over all of the lines that exist. Remember that the lawyer who defends herself has a fool for a client. Remember that you just got here — you haven't paid your dues yet, to be frank. Remember that with that LLB behind your name, people are taking what you say as Truth with a capital T, instead of Opinion with a capital O. And your opinions are not necessarily going to be agreed with by a BC justice, so stop making emphatic pronouncements that you "know" how things will be interpreted. You don't. You can't. I know lawyers who have practiced here for decades, including the principals of the Auton and Anderson cases, and THEY don't make pronouncements about what these cases mean with the CERTAINTY that you do. You are also, frankly, skating very close to the edge of the rules of the BC Law Society, and I would encourage you to rein in your enthusiasm as I believe it is blinding you to the possible consequences of your actions.

3) To Ned: Please understand that just because someone insists they're right, doesn't make it so. Much of what Joyce says may be borne out in a court, but I strongly suggest you speak to an independent counsel if you want an objective opinion.

4) To the Anons: There are very good reasons why the words Gateway, POPARD, Laurel Group, CBI and EIBI are anathema to many in this group. For some, it's because they had the misfortune of having their children victimized by the ineptitude, incompetence and ignorance of their useless "services". For others, it's because they have always been ready and willing and able to help the government violate the constitutional rights of our children, by giving evidence in court proceedings on behalf of said government. For others, it's the infuriating situation whereby we have successive governments crying "we're too poor to provide medically-necessary treatment for all these autistic children!" while shoveling tax money off the back of a truck into the eager arms of these very agencies. And that's without getting into actual physical abuse of our children. The day that any of these people are approved by FEAT is the day I tear up my membership card.

5) To the timid millions, frightened to ask questions in the FEAT board for fear of nasty replies — Get a life. If you can't stand the heat in THIS kitchen, how the hell are you going to stand up for your children in the trials and tribulations that face them for the rest of their lives? Put it this way — the social workers and Gateway staffers will treat you with kid gloves and say oh-such-nice things in your ears, while they're blowing smoke up your butt. Is THAT going to help your child? Autism is a BATTLE, ladies and gentlemen, and you better get tough is you're going to face up to that battle. I was talking to a FEAT member named Avrey the other day, and he told me a Japanese proverb that goes something like "He who asks the question is ignorant for a moment. He who doesn't ask is ignorant forever." Words to live by, I think.

[Deleted User]

I have had numerous calls from parents asking for my help in understanding additional details related to the information that I posted on this board over the last several days.

I also received emails and calls from parents who said that they were afraid to ask their questions on the FEAT Board, as they were afraid of the response they would get.

While I obviously cannot spend my entire life giving out free legal advise, I am happy at this time to respond to the questions from parents about the Anderson case, and how to go about applying for the funding that the courts ordered in the Anderson case (but not implimented by the government. I also am happy to respond to questions about IEP's and obtaining an appropriate education for your children in school.

If you feel comfortable in posting your questions to the FEAT Board, then my replies may have the opportunity to assist other parents as well. If you are one of the parents that feel uncomfortable in posting due to your past experiences, please feel free to email me directly. My email is finally functioning correctly.

Joyce Dassonville GN LLB
Lawyer & Mediator

Address:# 114 – 8532 120th Street
Surrey, British Columbia
V3W 3N5
Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca
Web Page:www.dassonvillelaw.ca

[Nenad Ivanovic]

To Joyce Dassonville:

Joyce

Thank you very much for your posts. They are very helpful to us who do not have much knowledge about the law.

Ned (Sophia's father)

[David Chan]

Thank you once again for your clarity Sabrina !

Dave,
Mr. P's Dad, and case Manager-(with
extensive consultation with our consultant)

[Sabrina Freeman]

Hello Everyone,

I would like to add some thoughts to the points raised by Anon 9/17.

1. Purported abuse and home-based programs

Unless abuse is documented, it cannot be proven. For allegations to have veracity, a credible witness and law enforcement report would be a starting point. Otherwise, charges are specious and possibly agenda driven.

2. A patronizing attitude toward parents who live in the 'hinterland'

It is patronizing in the extreme to claim that parents outside the Lower Mainland are unable to get access to autism treatment for their children purportedly due to socioeconomic factors or distance from the lower mainland. Their children certainly deserve access to treatment no less than children living in the Lower Mainland. Ironically, it is the very system that Anon 9/17 defends — Gateway, social workers, etc. — that keeps many unfortunate parents in the dark. Instead of educating these parents about science-based treatment, what is served up are generic support services by government-funded agencies. The notion that only those in the Lower Mainland are able to run Lovaas programs is incorrect, elitist and offensive. Class, education and distance are no barriers to a Lovaas program — inadequate public funding is. Consultants can fly all over the province. Proximity to the lower mainland is irrelevant.

3. Parents who are case managers don't need Gateway services

Parents who function as the case managers for their children's Lovaas-type program do not need the "support" of Gateway because their consultants offer all the programming and direction required. If they are unable or unwilling to follow through on their consultant's directions, then it's a near certainty they will not benefit from any Gateway parent education either.

4. The New York Report

The New York Report is not a study; it is a comprehensive review of the state of the science in autism treatment. It took over a year to produce at a cost of several million dollars. It involved dozens of treatment professionals and academics from New York State and beyond who reviewed all the studies on autism diagnosis and treatment and concluded that intensive behavioral treatment constitutes best practice. Anyone who disagrees with this review has a considerable challenge using science to refute it. It is a very well done review that cannot easily be discredited and swept aside (although the government's lawyers and rent-an-academic services from UBC made a best effort during the Auton enquiry).

5. Government Support Services

No one is opposed to government helping families with support services. If the government would like to help parents with respite funding, for example, that's good and necessary in many instances. However, this should be separate and apart from the provision of Medicare funding for necessary autism treatment. Autism treatment insurance is a fundamental right of autistic children, not something that government must do to help a family cope with the onslaught of autism. In addition, if the government were to provide all parents with adequate individualized funding, rather than giving contracts to ineffective, inefficient and bloated service providers, the government would save a lot of money and parents would get a better level of service, whether that goes for respite or day-care.

In closing, I'd like to say there are many energetic and enthusiastic therapists who have compassion for the families and children, but they must not limit their thinking to the government line. Government has not been a good and noble force where children with autism are concerned. Particularly in the arena of this ongoing autism dispute, it's vitally important to question authority.

Moreover, this is not a left-right issue. Although class warfare drives much of BC politics, it most emphatically does not characterize the struggle for universal access to necessary autism treatment. All of us have come together to challenge an unresponsive and entrenched system that has evolved in a VERY bad way for the children it is meant to serve. We are changing that system for the benefit of ALL our children, but this takes a generation of citizens committed to the proposition that authority can be wrong, and that merely because things are the way they are does not mean they are good and valid.

Why are people with special needs ghettoized, stripped of their dignity and their fundamental rights abrogated by government and others? Why is it that parents are so angry and litigious? Why does FEATBC even exist if the system were working so well? The next time a Gateway employer or ministry representative gives information, or spins a court decision a certain way, stand up to them, be a critical thinker and don't allow an army of government communication officers to mold the way you think. It is myopic government thinking and policies that have now led five judges to affirm that the constitutional rights of children with autism have been breached — and continue to knowingly be breached — by the Government of British Columbia.

Some fortitude is necessary to label a wholesale failure for what it is and then act to change a system for the better. Moral clarity is prerequisite in challenging foggy government thinking and narrow contracted service providers' self interest.

Sabrina

[Author]

Replies