[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?

[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

[Deleted User]

I am wondering if anyone can help me with an odd request. We are using a GameBoy as a reward for our son in ABA. It has been a fabulous tool. My son uses the Digimon game and we don't know how to get past where we currently are in playing the game. I am concerned he will lose interest soon. Is there anyone out there who knows someone who can play this game well? (The instructions are not very helpful). If so could they e-mail me at katzalay@hotmail.com

Thanks!

Stephanie Hacksel

[Deleted User]

To Joyce Dassonville:

Here's another one to add to your list.

I for one am getting tired of the patronizing tone of your (needlessly)long messages, as well as your repeated attempts to advertise for your firm. You talk about the spirit of the msg. board rules; your ads violate the spirit w/o any doubt, but maybe not the letter.

I don't mind the lively, sometimes emotional debates. I certainly appreciate when people come to the defense of ABA (or IBI, if that's what you want to call it). What will scare me off is not these, but contributions such as yours: pedantic, patronizing, wordy and condescending. Although I do appreciate the work of the lawyers involved in the Auton case, who wants to hear another lawyer yapping on in this forum, lecturing us on how to behave?

However I do support your fight against the NS government.

Recognize that this is a lively group. If you don't like people calling a spade a spade,or occasional verbal spats, then get out! I for one would be relieved.

[Deleted User]

As a contributor to this FEAT Board, I try to keep in mind
the needs of parents of the newly diagnosed children. These
parents are very vulnerable to influence and suggestions. In
desperation and in the face of depression, anger and a
severe lack of information; the parents of newly diagnosed
children are unable to weight the pros and cons of the
various options that will be placed before them without
concrete and specific information about what the
scientifically researched treatment for autism really is.
In the best interest of their children who have only their
parents to advocate for them, it is of vital importance that
the FEAT Board is able to disseminate relevant and useful
information to these parents, many of who are outside of the
lower mainland and many of whom knew almost nothing about
autism before they received their child's diagnosis.

First, I want to say that after 3 years of the Nova Scotia
Autism Society meetings; the debate of issues related to the
treatment of children with autism in BC is incomparable. In
Nova Scotia, the majority of parents do not have the energy
or the willingness to fight for ABA/IBI therapy for their
children; instead, they spend their time comparing stories
about their unfair fate.

The unwillingness of Nova Scotia families to joint the fight
for ABA/IBI for their own children meant that I single
handily have taken on the government of NS, the Halifax
Regional School Board, the IWK Children's Hospital (the most
popular hospital in the Atlantic provinces), as well as the
paediatrician and the psychologist who neglected to tell us
that ABA/IBI even excited, let alone was a "medically
necessary treatment".

While our family has returned to BC after a 10-year period
back East, (as we could no longer secure any qualified
consultant, let alone find a skilled therapist to work with
our child in Nova Scotia), I still intend to take my Nova
Scotia law suit to trial and to the Court of Appeal if
necessary. I will also start any additional law suits here
in BC that prove to be necessary in order to secure full
funding for my daughter's ongoing ABA/IBI program.

Much to the distaste of many of the parents who are fighting
the fight for funding in the Auton case, I will be using the
term IBI / Intensive Behavioural Intervention in many of my
postings and communications. I recognize that many of you
are of the opinion that IBI is something "BAD", but I
disagree. The term IBI is used in the Behavioural Analytic
field on a regular basis all across North America. Board
Certified Behavioural Analyst's across North America (mostly
in the US of course) routinely use the term IBI.

In fact the title of Lovaas' most recent book: "Teaching
Individuals with Developmental Delays: Basic Intervention
Techniques" (2003) ISBN 0-89079-889-3, refers to
"Intervention". He did not name his book ABA Techniques, but
instead choose the word Intervention as part of the title. I
am quite sure that not one advocate behind the Auton case
would question Lovaas' choice of title for his new book.

To my knowledge, BC is the only place where parents of
children with autism have such distaste for the term IBI. I
understand that this loathing of the term IBI grew out of
the position the government took in the Auton case, and the
fact that after the Supreme Court judgement, the government,
under the name of IBI, began to put into place and/or
implement programs which do not even remotely come close to
"best practices". To add insult to injury, the government
then used the same people who testified against ABA in
Auton, to oversee their new programs.

The inappropriate use of the acronym IBI, and the relating
of the term IBI to below "best practice" standard programs
by the BC government does not make the acronym IBI, in and
of itself, a bad term. In my opinion, this situation is a
credibility issue of the government-based programs, not a
reflection on the term IBI, which is widely used in the
Behavioural Analytic field and by numerous Board Certified
Behavioural Analysts, including Lovaas himself.

What needs to be achieved is the implementation of proper
programs covered by our Health Care cards. I really do not
care if the government puts a program in place and calls it
the Christmas Tree Approach, so long as the program is fully
funded, meets the test of "best practices", "medically
necessary treatment" and is based upon proven scientific
research. Parents must also have control over which service
provider/consultant they wish to go to, just like we all
choose our own family physicians and they are all still
covered by our Health Care cards.

Second, I want to say that the energy and willingness of
families in BC to not only fight the government for the
medically necessary treatment our children with autism need,
but to also be discourteous and to throw insults, both
directly and indirectly at others, including services
providers (of whatever services) that they do not 100% agree
with boggles the mind. The personal attacks straight up,
and the personal attacks in vague disguises, is nothing
short of amazing, especially considering the rules of this
FEAT Board on posting messages:

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.

I really have not seen a lot of compliance with the spirit
of the above quoted rules let alone the letter of those
rules, in any of the back and forth discussions when two
people are disagreeing on any issue, either recently or in
past discussions I have read on the FEAT Board.

In my opinion the biggest losers of the back and forth
discussions on this FEAT Board, which are often thinly
veiled attacks on the services of other providers, are the
parents of newly diagnosed children. I see no big winners.
It looks like a loose loose situation to me.

If a parent of a newly diagnosed child was to log on the
FEAT Board and be confronted with the tone and quality of
the discussions that show no regard for the spirit of the
FEAT Board rules, there is a high chance that they may never
log on a second time. Those parents, who most need a forum
such as a FEAT Board, to learn about the medically necessary
treatment that their children need and are entitled to, will
have lost a tremendous opportunity.

These new and scared parents, who could most benefit from
valuable information will be driven away from the FEAT Board
and be left to have only one source of information available
to them. That source of information will be the very
government providers that the long-standing members of this
FEAT Board have spent so much time, money and energy
fighting.

If there is any "winner" of the postings on the FEAT Board
where people are warring, in a manner that shows no
consideration of the rules of the FEAT Board, that "winner"
would be the government service providers, who testified
against the children in the Auton case. They will become the
first line of contact and the ones who will greet the
parents of newly diagnosed children, with statements of
understanding and sympathy, offer to come to their home and
generally behave in a courteous and friendly manner. By
warring and carrying on in abusive and insulting debates the
persons participating in this type of posting have only
succeeded in driving away the very audience they most want
to reach.

The quality of information that could be disseminated on
this public FEAT Board is not reflected in what is actually
posted. In fact, sometimes the quality of the discussions
has at times sounded a bit like what I have observed when
excerpts from the House of Commons debates are televised as
part of the evening news.

Why do people posting on the FEAT Board spend so much time
and energy circumventing the spirit of the posted rules,
when the biggest accomplishment they will end up with is
driving away new parents, with little knowledge and
experience. The opposing points of view (the people on each
side of the issue) are not going to change each other's
minds with the nature of the discussions I have seen. I
cannot even imagine that anyone actually believes that by
posting one more degrading comeback that they will change
anyone's opinion. Opinions and views can be changed, but it
will not happen with use of degrading and insulting
postings.

The best way to prove a point is to provide overwhelming
evidence to support your position, often in terms that your
audience is capable of understanding, as opposed to the
terms used in the scientific community, and to spend as
little time as possible replying to the position disagreed
with. By replying repeatedly to opposing positions, all you
accomplish is to give that opposing view more airtime.

In fact, all of us, as part of our ABA/IBI programs for our
children, reinforce the positive and ignore the negative
with our children with autism. Why is it that parents of
children who have fought so hard for funding for ABA/IBI
services for their children, have not learned to apply the
same techniques to their efforts to disseminate information
about ABA/IBI? I can think of many examples in my own life
where I could better have dealt with the situation at hand
by using ABA/IBI techniques and I did not. Perhaps in our
middle age, we do not learn as fast as our children with
autism do!

As I stated at the beginning of this long posting, these
parents of newly diagnosed children are very vulnerable to
influence and suggestions. In desperation and in the face of
depression, anger and a severe lack of information; the
parents of newly diagnosed children are unable to weight the
pros and cons of the various options that will be placed
before them without concrete and specific information about
what the scientifically researched treatment for autism
really is. In the best interest of their children who have
only their parents to advocate for them, it is of vital
importance that the FEAT Board is able to disseminate
relevant and useful information to these parents, many of
who are outside of the lower mainland and many of whom knew
almost nothing about autism before they received their
child's diagnosis.

In closing, the acrimonious tone of much of the posted
information on the FEAT Board, in my opinion, serves no
productive purpose and is actually driving away parents who
are new to the world of autism, new to what is and what is
not "scientifically researched and proven treatment", and
the most in need of useful and relevant information.

The lead taken by the parents behind the Auton case (and the
Anderson case) has cost those parents a tremendous personal
sacrifice. Because of the Auton case, I have been able to
put my own single-handed fight in Nova Scotia "on hold",
knowing that many of the issues I am fighting for will be
resolved by the SCC in Auton. I have the parents in the
Auton case to thank. Without their sacrifice, my case in
Nova Scotia would truly have been a single-handed one.

The fight should continue until we have accomplished our
goal of ensuring that scientifically proven ABA/IBI
treatment is available for all children with autism. Lets
focus our efforts on promoting ABA/IBI as a medically
necessary treatment, and a constitutional right of all of
our children.

Joyce Dassonville GN LLB
Family Law and Health & Disability Lawyer

# 114 – 8532 120th Street, Surrey, British Columbia, V3W
3N5

Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca
http://www.dassonvillelaw.ca

[Deleted User]

I am writing to reply to the question of Tammy Fazio.

It is not surprising that the front line social workers have not heard anything about the recent Anderson decision. From the government point of view why hurry to pass on important information?

Be sure to quote the fact that your social worker knew nothing about the court decisions when you confirm your conversation in writing.

All BC court decisions are available on line at the British Columbia Superior Courts Home Page: http://www.courts.gov.bc.ca/. Every government employee with Internet access could download the court’s decisions if they choice to do so. Be sure to quote in your letter that you downloaded the decisions from the web address that you are now copying to them. Also send them copies by fax or email (hardcopy if you have no access to fax or email) of the actual decisions so as to avoid any further delays. You should not have to provide government employees with copies of information that is accessible to any member of the public with a computer and internet access, but that is not the issue here. Preventing any further delay to the receipt of your funding for your ABA/IBI program is the relevant issue.

All BC court decisions immediately receive an unreported Citation. The unreported Citations for the two relevant cases are as follows:

Anderson et al. v. Attorney General of British Columbia, 2003 BCSC 1299, Docket: L030566, Registry: Vancouver, Date: 20030822

Auton et al. v. AGBC, 2000 BCSC 1142, Docket: C984120, Registry: Vancouver , Date: 20000726

In addition to your post and request for further assistance, I have also fielded several phone calls with requests for information. I want to stress that it is imperative that you put all of your communication in writing. Whenever you have verbal conversations, be sure to follow them up with written confirmation of the conversations. A failure to keep a “paper trail” will come back to haunt you at a later date.

Finally, today was the date that my social worker and I agreed she would get back to me. I received a verbal reply late this afternoon, as per our agreement. I will confirm that verbal reply in writing and post my reply to the FEAT Board ASAP, for the information and assistance of those families who are unsure of what to do next.

Good luck with your applications for ABA/IBI funding.

Yours truly,

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]

Joyce – thanks you so much for all your information posted recently. I have finally talked personally to my social worker today and she has said that she has not heard (nor have her supervisors) anything about this new court ruling. She states that sometimes there is a lengthy process in the information getting filtered down to all offices. she also mentioned that I was the first call that their office has received with respect to the new court ruling. She asked where this information could be made available to her and her superiors so that they can follow through. If you know, could you let me know so that I may pass this on to them. It seems odd that it should have to be done in this fashion – seeing that they should have sources internally to contact but what can you do?? Thank you.

[Deleted User]

I am writing to the lady with A. as her first initial. The telephone message you left me was not clear and I get a wrong number when I tried to phone you. If you still have questions for me, please phone me again, or you could try emailing to my home email address above.

Joyce Dassonville GN LLB
Family Law and Health & Disability LAw

Address:# 114 – 8532 120th Street
Surrey, British Columbia
V3W 3N5
Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca (not yet active)
Web Page:www.dassonvillelaw.ca (not yet active)

[Deleted User]

For those of you who have not read the Anderson case, or have read it and did not understand it, I have copied and pasted the court order which resulted from the written decision. The order was actually included right in the written text of the judgement of the court, not a usual procedure.

The Anderson Court Order is as folows:

1. The Crown has violated the infant petitioners' rights under s. 15(1) of the Charter of Rights and Freedoms from and after July 26, 2000.
2. Each infant petitioner is entitled to government funded treatment in the nature of that which they have or had been receiving provided that such treatment should still be useful.
3. The Crown is required to fund such treatment for each infant petitioner from July 26, 2000, provided that the infant petitioner establishes usefulness of treatment by a written opinion from a physician supported by a written opinion from a qualified paediatrician or psychologist, such treatment to continue until the medical view is that no further significant benefit in alleviating the autistic condition can reasonably be expected from continuation of treatment.
4. The Crown may challenge the efficacy, intensity and duration of treatment of any of the infant petitioners by a process reached by consent of the parties, or failing agreement, through a hearing in the Supreme Court of British Columbia.

What does this mean who the families that were not part of the Anderson case?

1. The written reasons make it clear that the same declaration of a denial of constitutional rights will apply to all children with autism in the province of BC.

2. The words "is entitled to government funded treatment in the nature of that which they have or had been receiving" may be problematic for those families who do not have have any ABA/IBI program in place as they could not afford to put one in place. Just how do you obtain reinbursement for a program "in the nature of that which they have or had been receiving" if your child has never received the benefit of some programming.

My advise is to begin the process to put together an ABA/IBI program immediately. If possible use the $20,000.00 before the age of 6 or the $6,000.00 after the age of six that you received to get your home ABA/IBI programming up and running. Once your program is in place, you then can better claim that your child is entitled to a program reinbursement "in the nature of that which they have or had been receiving".

3. The statement that says: "establishes usefulness of treatment by a written opinion from a physician supported by a written opinion from a qualified paediatrician or psychologist, such treatment to continue until the medical view is that no further significant benefit in alleviating the autistic condition can reasonably be expected from continuation of treatment",
clearly means that you must have medical/psychologist back up and support for your program. You cannot simply go off and put together your own program without written documentation from the specialists that your child will benefit and/or will continue to benefit from such a program. Therefore be sure to obtain the necessary medical/psychology back up you need, prior to asking for reinbursement.

4. The statement that the "Crown may challenge the efficacy, intensity and duration of treatment" means that you must be prepared to defend the program you have/or will put in place, and further that your professionals may be called upon to defend the program that they are recomending.

My above comments should not be taken as legal advice for any family. The circumstances of each family are different and may involve other considerations than the information I have noted above. My comments here are general comments and general information only, from a mother of an autistic child, familiar with fighting for her child's legal rights.

My final advice is to begin putting your ABA/IBI programs in place ASAP, even if it means that you have to rob Peter to pay Paul, in your family budget. Regardless of the legal issues, every child with autism will benefit from the receipt of medically necessary treatment at an earlier date rather than a later date. When considering the legal issues, there has been no better time to commence an ABA/IBI program and to then seek reinbursement. The most likely chance of seeing reinbursement for your ABA/IBI program from the government in a reasonable period of time is now. (hopefully fast enough to keep the wolf from the door, when you take the family finances out on a limb).

There is no guarantee that the government will reinburse families as ordered by the courts to do so, either at all or in a timely manner. There is also no guarantee that the Supreme Court of Canada will uphold the Auton case, but just when are there guarantees in life anyway?

After the Anderson case, this is clearly the time from a legal point of view to say "ME TOO."

Good luck to all of you in your efforts to get ABA/IBI programs established immediately if you have not already done so, and to all of you in your efforts to seek reinbursement of the very high cost of your ABA/IBI programs.

Yours truly,

Joyce Dassonville GN LLB
Family Law and Health & Disability Law

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

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