[Maureen St. Cyr]

My friends, there is an old saying which I am fond of
quoting: "The road to hell is paved with good intentions."
Well, I'm sure the post I've just read from the anonymous
EA was written with only the best of intentions.

"I'm an EA that has recently been hired by an unnamed
school board to work in their district implementing ABA
programming."

Please don't take this the wrong way, Ms. or Mr.
Anonymous, but I'd be curious to know what your
credentials are for implementing ABA programming.
Forgive me, but I have high doubts you are a bonafide
consultant, since what I have learned of them in 5
years of programming for my daughter is that they would
never advocate the behavior that you do.

"They cannot blindly cater to specialized programs like
ABA because if they did, they would be inundated with
parents advocating many other programs."

This is the argument government tries to advance as a
defence for violating the equal rights of our children under
the Canadian Constitution. It has not worked for two BC
governments, it will not work for schools or school systems
either. ABA is not a "program" which schools can choose
whether to implement — it is a judicially recognized
medical treatment which they cannot interfere with, under
pain of legal judgement. It is no different than the medical
treatment provided in the schools for other medically
fragile children, such as full-time nursing staff who are not
under the control of school or board. School personnel are
not medical experts.

"They are a governing facility; and as such, must govern
what comes in and what does not."

I'm afraid not. See my earlier comments.

"I assure you that the decision that is made, whether it is
to implement ABA or not, will be the best one for the
children based on the funding available and many other
factors that influence such a weighty decision."

No, it will not. It will be based on the child's medical
treatment needs, as determined by the child's medical
experts. Funding has nothing to do with it. As has been
decided by more than one court, no government body may
use cries of poverty to deny equal treatment. Would you be
happy, Ms./Mr. EA, if the decision whether or not to treat
the leg you break skiing was left up to whether someone
felt they could afford it? Would you like to be handed an
aspirin at VGH emergency and told, "Sorry, we just can't
afford another cast this week — perhaps if you break your
leg next year, we might be able to fit you in."

"I like the way that many people in this chat room appear
to be proactive in attempting to educate the school board
and do not seem to be belittling anyone."

It is always best to speak clearly and professionally without
personal criticism. It is truly unfortunate that we, the
parents, must educate the school boards. Unfortunate, and
ironic.

"This needs to be done so that the school boards can
make a decision as to whether or not they will implement
ABA."

Need I say again that it is not the school board's decision?

I understand you mean well, but I'm afraid you are
misguided. I hope you do not end up doing more harm
than good in your new job with the anonymous school
district. You would do best to be sure you have the
training, experience and expertise to create proper ABA
treatment programs before you attempt to do so.

Best wishes,

Avery
Ariel's Dad

[Maureen St. Cyr]

The URL posted by Anonymous for the California report has
a typo — you can access it at:
http://www.dds.ca.gov/Autism

[Maureen St. Cyr]

All kids are different, so all you are going to get from a
question like this one is other people's experiences, and
they'll all be different, too. With that caveat, my suspicion is
that you'll find your child enjoys and gets more out of all
his/her activities when they're part of an ABA program that
sees a therapist included. A proper ABA program is not
table time — it's all the time. If you have an idea what your
child enjoys or might enjoy learning, let your consultant
know and have them work it in as an element of the
program. Good luck.

Avery
Ariel's Dad

[Maureen St. Cyr]

Claire, the link just isn't making it through the email…if anyone simply follows the link at the bottom of your email notification back to the board itself, you'll find the entire link in Claire's post. And thank you — great story, great coverage, hopefully the politicians are paying attention.

[Maureen St. Cyr]

When it comes to dentists, I recommend pediatric specialists, even though they usually come with an extra fee. The Pediatric Dental Group is frankly superb and they have three offices around the lower mainland. I take my TD daughter and my A-team member there.

[Maureen St. Cyr]

Dear Anonymous-the-Latest:

First of all, good for you for keeping your team and child anonymous and confidential. That is as it should always be.

As for the rest, it is admirable that you care enough to want the child to have the very best treatment program he/she can. Yes, it's frustrating to see opportunities for improvement going unexploited. Bravo for wanting to make a change. So here is my two cents on what you can do:

1) Talk to the consultant. Quietly, diplomatically, confidentially, let her/him know where your concerns lie and see what he/she says. There may be factors you don't know about, or you may be bang on and the consultant may not even be aware — not good for a consultant, but it happens.

2) Talk to the parents. Underline the diplomacy. Remember that we parents have more on our plates than you could ever imagine, and we all try our hardest. The parents may not be as uninvolved as you think — it may just look that way for the hours you are there. You might think I'm "uninvolved" because I'm frequently busy doing other things when Ariel is working with her team. But you'd be wrong, because I do a lot of work when the team aren't there, and a lot more behind the scene.

3) Speak up at team meetings. Again, remember feelings. Remember your ABA training (you get somewhere by praising the good and extinguishing the bad, far faster than trying to jack everyone up by your bootstraps). But also remember that's what team meetings are for — to discuss where programs are working, where they aren't, and where they can be improved.

I'm sure I'm forgetting a few, but those are the main areas I think you can have a good effect on the situation, beyond, of course, doing the best therapy you possibly can.

Avery
Ariel's Dad

[Maureen St. Cyr]

To Anonymous:

Don't be offended…I believe you miss the other person's point, which is that it's really not your responsibility to worry about whether your therapists pay their taxes or not. In other words, our wonderful (<-sarcasm on) government may insist you become an "employer" in order to provide medically necessary therapy for your child, but it should not be necessary. Your therapists are the ones running the business — each is self-employed like every other medical professional, and they are billing you for their services. You shouldn't have to withhold taxes or deal with WCB or anything else because you are not an "employer" in that sense. Of course, I'm not saying that's the way it IS, I'm only saying that's the way it SHOULD be.

[Maureen St. Cyr]

Regarding therapist wages and employment, I do understand your pain, and I guess most of us who have been at this for a while share it as well. It's unfortunate that government's ignoring of our children's rights leaves us not only picking up the pieces of running proper science-based therapy, but also being managers and employers and accountants. But that is the reality.

So what do you pay therapists? You pay them what they are worth, tempered with what you can afford. There are two reasons why people go into ABA therapy as a profession — to earn a living and to help make an unbelievable difference in the lives of our children. We hope they always do it for the latter reason, and it's completely reasonable that they do it for the former as well. It's true there are those few for whom the main reason is mercenary, but I truly believe those are few and far between.

So, are your wages too low? Hard to tell without knowing what they are. Yes, if your child is particularly physical, it's going to be a strain on therapists and you will go through more of them. This is unfortunate but not unexpected — it's as hard for them as it is for us — harder probably, because they're not their kids. Throwing more money at that kind of problem is unlikely to really help…I hope your consultant is dealing with the physical stuff, as that is probably the most primo behavior to get under control, for your child's sake as well as everyone else.

Progress reviews for therapists? I ask my consultant to do them, informally as part of her overlaps with the team. I prefer a continuous process of growth, rather than a "checkup", but everyone has their own techniques and you're entitled to them. Of course the flip side of that is that everyone is entitled to their own hiring and etc. technique — neither I nor anyone else has a corner on how to do it.

Finally, as for the idea of a "therapist agency," while I certainly can appreciate that it sounds good to not have to go through the interview and hiring process ourselves, who exactly would we trust to do this for us? I would trust my consultant, because I know them and I respect their procedures and training programs. But then I certainly wouldn't allow some government-appointed "service" provider to tell me who was going to work with my daughter. Forget that.

The above are as always just my opinion. As the old saying goes, "your mileage may vary."

Oh, one more thing, just for my two cents — I think there are two many anonymous postings here these days. I understand people bringing up things the government may try to use against us would like to keep their names off the net. For the rest, I'd like to think people would stand up and sign their name to their opinions.

[Maureen St. Cyr]

For "anonymous" and anyone else who couldn't be there last night:

The ASBC extraordinary general meeting was quite well attended — perhaps 200 voting members of the Society. The motion to remove the current board of directors was put to the floor, discussion followed, and upon voting by secret ballot, failed to pass.

The membership of ASBC has spoken, the current board of ASBC is confirmed. This is good news, and at last we can get on with the arduous job of fighting for the rights of people with autism, instead of fighting amongst ourselves.

After talking to many of the people who signed the petition to remove the board, it became clear to me that there is a clear communications problem between the board of ASBC and the membership at large. I have some ideas for how to make that better so that members never again have to be led to worries of the kind of grave nature which were passed around in recent weeks. The members of ASBC should be able to contact the board to raise their concerns and have them answered as promptly as humanly possible in a volunteer organization (the board is volunteer, only the staff are paid). I will be raising my ideas for discussion with the Communications Committee at our next meeting, and with the board in general. There are also some ideas for improving communication which have already been discussed by the board — some raised by board members and some by staff — and I had hoped to have at least some of them implemented by now. Really, this message should be posted on the ASBC Chat Board — but we don't have one yet. Hopefully we can get that going soon, since it has been raised as a desired facility by staff, board and membership alike.

I will raise my biggest concern right now in this forum, since it is appropos to the membership of both FEAT and ASBC. There is still a perception among many that FEAT and ASBC can also be spelled as THEM and US. That needs to change, and it is one of the principal reasons I joined the board a year and a quarter ago. Three of the people involved in trying to bring down the board last night were FEAT members. Many of the people who supported the current board last night were NOT FEAT members. If nothing else, that should be ample evidence that there is no THEM and US, only people concerned with helping families affected by autism.

I personally encourage you all — if you have not joined ASBC yet, do so. If you are already members, get involved. We have a committee structure set up and in place. Any member is welcome to join it and contribute. Let's stop fighting among ourselves and apply the same drive to fighting together against those who would deny the rights of our loved ones, regardless of their age, regardless of what memberships they hold.

To those who voted for the board last night, thank you. I hereby guarantee you I will fight first last and always for the rights of our kids, young and old. To those who voted against the board last night, thank you for caring enough about ASBC to be there and express your views and needs.

Last but not least, as the chair of the communications committee of ASBC, I feel a personal liability for the clear lack of communication between the board and membership. Therefore I will take the following step on my own to begin making it up to you all — Any ASBC member or concerned parent who wishes to bring a concern to the board of directors may contact me personally at araskin@uniserve.com. I will do my best to answer any message received promptly and personally, and I will bring your concerns up with the entire board at the next directors meeting.

Thank you all, and happy summer,

Avery Raskin
Vice-President
ASBC

[Maureen St. Cyr]

"Anonymous" has questions. I believe I have some
answers. First though, I have to start with a caveat: I am
one person and I speak for myself and my own
intentions.

"Can anyone tell me how many years the government
should fund my son's ABA program? Until he is
"recovered"? Lovaas's study showed 47% of young
children receiving ABA treatment recovered. Should the
other 53% get 40 hours of one-on-one treatment for
life????"

The government should fund your son's medically
necessary physician prescribed treatment until it
ceases to be of any use, in the judgment of the
physicians involved. You should also be entitled to
second opinions of your choice — not the decision of
one person in the employ of the government. There are
many illnesses and conditions which are incurable and
yet medical treatment doesn't cease because of it. If
your child – God forbid – had cancer and the first
chemotherapy treatment didn't cure it, would you like
the doctors to wash their hands of him and tell you to
pay for the next set yourself?

"Are the ABA methods used the same at age 3, at age
13, and at age 33?"

ABA programs are designed individually for the
individual child. This includes his or her age.

"Are there comparative studies to back up the
effectiveness of ABA when applied to older children
and adults?"

I don't know of any. That doesn't mean there aren't any.
However it should be noted the government pays
generously for many treatments for which there is not
yet hard data of efficacy. And the government still
funnels millions of dollars into autism therapies which
are completely disproven.

"How will the recent changes to the ASBC board benefit
or hurt individuals with autism?"

The new members of the board of ASBC are intelligent,
hard working parents. I knew some of them before the
AGM and I'm getting to know the rest now. I am sure
their contributions will help families with kids and adults
who suffer from autism.

"Can anyone tell me if the new ASBC directors are
going to represent the interests of adults with autism?"

I suppose I should feel a little insulted by that question,
but emotions are high here, so I'll stifle it. For the record,
the ASBC constitution says it works for the benefit of all
people in the province with autism and their families.
This is the constitution I read before joining the board of
directors a little over a year ago, and this is what I will
fight for as long as I am a member of that board. That
means people of all ages.

Let's get something straight here, folks. This is not a
brand new board. The majority of members are the
same as they were last year. NINE of the board
members have not changed. Of the other six who
joined the board on August 1, one is a woman who is
rejoining the board, having been a member a few years
ago, and another has been an ASBC group facilitator in
Surrey for a long time. So that makes 11 out of 15. The
other four were nominated from the floor and elected, to
fill positions which became vacant due to some of the
previous board members resigning through the course
of the last year. There was only one sitting, previously-
elected board member who was not re-elected.

"Or the interests of families who earnestly tried ABA for
several years, but found their child was in the 52% who
don't recover? Will they represent the interests of the
80% of individuals with autism who have no connection
to FEAT of BC?"

I think that question is already answered, but let me
underline it. The ASBC constitution says nothing about
what cards you carry in your wallet or what your belief
structure is. The ASBC says it works in the interest of
ALL people affected by autism, INCLUDING the ones
who haven't even joined ASBC. If you are affected by
autism and you want to call ASBC for help, the Society
is bound constitutionally to give it to you.

"Can anyone tell me if the new ASBC directors are
going to focus on an exclusively ABA agenda?"

While I cannot speak for every person on the board, I
think it's safe to say that the nine veteran board
members will probably continue to make their
contributions in the same way they have before, and
the six new ones will find their areas of contribution. I
can speak for myself, however, and I can tell you that
my concerns include the situation for our children in
school, and the situation for our grown-up children
under governments who feel no need to do anything for
them.

"Will the ASBC newsletter only include FEATofBC
approved content? Will there be a book burning in the
ASBC parking lot of all non-ABA titles in the ASBC
library?"

Some might say those questions are not worth
dignifying by answering, and it's pretty clear to me the
intent of some of them is to provoke reaction, but let me
answer them anyway — I will fight any attempt by
anyone – board or staff – to allow any outside agency to
dictate the contents of the newsletter or library.

"Will ASBC money be used to pay for past lawsuits by
FEATofBC members? Will ASBC money and resources
be made available to FEAT of BC?"

I cannot imagine anyone on the current board
suggesting such things, and I believe they wouldn't
even be legal.

"Do the new ASBC directors plan to merge ASBC with
FEATofBC?"

No.

"Will the new ASBC directors refuse further funding for
ASBC from government?"

No.

"Is the plan to gut ASBC, then leave it to die in
retaliation for opposing ABA treatment and for being
useless?"

No. Whether you choose to believe it or not, the plan is
the same now as it was before August 1.

"I have spent more than a year now working to help
Are ASC and other provincial Autism Societies next?
These questions are out there. A lot of people including
myself want to know what happens next?"

Neither I nor any of the other board members can
predict what is going to happen with other societies. I
think we have enough on our plate dealing with our
one society and each of our own families. If you have
spent a year helping, I applaud you and I encourage
you to continue. The ASBC needs more volunteers with
energy and enthusiasm.

I am frankly shocked and dismayed by the letter being
circulated as it is so filled with inaccuracies and wild
suppositions. I hope some of these have been laid to
rest.

Avery Raskin
Ariel's Dad
Vice-President, ASBC

[Author]

Posts