[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

[FEAT BC Admin]

To post articles to the discussion board, insert the following line in your post:

Put a "\" symbol (backslash) in front of the phrase "attach{Text description}," where text description is the name of your file., such as "article.doc"

When the message is posted you will be prompted for the location of the attached article on your hard disk.
_________________________________________________
>By Ursula Lee (Lee6) on Friday, September 17, 2004 – 01:57 pm:

>… I have several articles on cost benefit analysis and review … which I will be happy to share with anyone who wants. I just don't know how to post articles on this chat board.

>Ursula Lee
_________________________________________________

[Ursula Lee]

To the Michele Dawsons of the world:

There is no question, of course, that ASD is a clinical entity, and costly to society in terms of purely medical treatment but also in terms of lost productivity of those caring for affected individuals as well as lost potential productivity of the affected individuals themselves. Not to mention the very real (but "soft") effects of pure human suffering, parental grief and children's frustrations with suboptimal quality of life experienced by affected children. While people like Ms. Dawson have a different philosophy and experience, and have a right to their own opinions, there are at least 2 indisputable facts which are not open to debate or interpretation. First, ASD is a neurologically based disorder with replicable findings and consistent genetic abnormalities. No one will dispute these facts. There is very good data from brain research and imaging that ASD has distinct findings.
The second indisputable fact is that adults with mental disabilities represent a very large segment of health care costs incurred by society as a result of institutionalized care and lost productivity. Without intervention, it can be assumed that close to 100% of children with ASD (reported by Rutter, 1970, but I'm sure there is more recent literature to support this) will fail to fully contribute to the economic health of society and many of whom will go on to become dependent on state-funded care as adults. With intervention, and here, the only reported methods being early behavioral intervention (very similar but not restricted to Lovaas ABA however,) about 50% of affected children may be expected to recover, and do not go on to incur health care costs to society. The studies by Jacobsen show a net savings of about $1 million per individual. Therefore, those who are inclined to argue that it is an unnecessary expense to society should be convinced that in fact, there is a net savings to society and on that basis alone, should be motivated to support treatment since it is actually a net benefit to society ( in terms of both cold hard cash plus the addition of productive individuals to enrich the human race) and not simply society bending to the wishes of a few hysterical parents.

I have several artciles on cost benefit analysis and review artciles of ASD as a clinical entity which I will be happy to share with anyone who wants. I just don't know how to post articles on this chat board.

Ursula Lee

[Andrew Kavchak]

Hi Folks,
In case you are interested, this is my response to Michelle Dawson's letter that I sent to the Globe and Mail today. For those so inclined, please send the Globe your letters too.
Andrew Kavchak

I regret that you chose to publish the letter of Michelle Dawson (Don't Pathologize Us – Sept. 17) in which she vilifies me and my attempts to get my three year old autistic son off the healthcare waiting lists so he can get medically necessary therapy to treat his disorder. Her perverse misrepresentation of the issues involved in understanding the nature of autism and the best treatment known to humankind have only served to poison the well of policy debate in this area of healthcare delivery. Her error-laden intervention against autistic children in the recent Supreme Court of Canada hearing of the Auton case from BC (June 9, 2004) was particularly offensive to parents of autistic children because it demonstrated that in addition to the daily struggle of having to deal with children who are in their own worlds, as well as the challenge of litigation against insensitive and lethargic governments who shirk their healthcare delivery responsibilities, we must also deal with the arguments of those who oppose all help for those born with developmental disorders, even after the medical research community has proved that treatment can help autistic children become increasingly functional. As a parent of an autistic child, seeking out the best medical treatment for my child is my duty and responsibilty, precisely because my son has value and worth. Those concerned about prejudice against autistic people in society should pour their scorn on the Ministers of Health for their not addressing the long autism treatment waiting lists in their recent accord rather than dumping on parents who are trying to help their children and prevent them from becoming lifelong burdens on the state. Ms. Dawson is apparently able to fend for herself, but that is not the case for the overwhelming majority of autistic adults.

[Andrew Kavchak]

Hi Folks,
As many of you know, I have been protesting daily on Parliament Hill in Ottawa with a sign that reads "Kids With Autism Need Healthcare Not Waiting Lists". This past week several parents of autistic children joined me in front of the Conference Centre and we received some great publicity and coverage in the Ottawa Citizen and Ottawa Sun, National Post and Global TV. Yesterday the Globe and Mail published an article about healthcare wait lists with some quotes from me and a picture of some protesters and an autistic child in front of the Conference Centre. Well, the notorious Michelle Dawson has struck again with another truly idiotic letter to the editor in today's Globe and Mail (reproduced below). For those of you who are so inclined, please consider writing a letter to the editor of the Globe in response. Send your letters to "letters@globeandmail.ca". Remember to include you name, address and daytime phone number. Limit your letter to no more than 200 words.
Thank you.
Andrew Kavchak

Don't pathologize us
Source:Globe & Mail
Sep 17, 2004
Page: A16
Section: Letter to the Editor
Edition: Metro
Byline: MICHELLE DAWSON
Montreal
Re We're Still Going To Be On A Waiting List (Sept. 16): I agree with Andrew Kavchak that the way autistics are treated in Canada is sickening. Literally.
Activists such as Mr. Kavchak have spread the expedient lie that autistic people are sick, and that without one specific treatment very, very early in life we are doomed. The treatment
Mr. Kavchak wants paid for, at the expense of those requiring such procedures as heart surgery, is no more medically necessary than cochlear implants. Many deaf people strongly oppose the
idea that they are defective or inferior and must be fixed or cured, just as many autistic people reject similar bigoted views of autistics.
Autistics do not appreciate being pathologized so that Mr. Kavchak's son can be intensively trained at public expense to be or resemble someone he is not. If the idea that autistic people may have
value and worth and possibilities as autistic people — rather than being horribly sick and defective — strikes Mr. Kavchak as absurd, he is merely registering his own prejudices.
Mr. Kavchak should make his case without making us sick.

[Super Dad]

Regarding Nancy's Sept 11 message about looking everywhere for potential therapists: I think I am now on the security watch list of every mall in the lower mainland, as the pervert who approaches every nice girl working in the mall. I will continue to do this until I get tossed out, even though I do not need a new therapist at this moment, because I know some parent will benefit. I encourage the moms to do this as much as possible, so the dads do not all get arrested.

[Nancy Walton]

I have been getting several calls and e-mails lately of people looking for therapists. I agree networking with each other is very valuable and can sometimes result in finding a good person to work on your team.

Lately, however, there simply is not enough experienced therapists to go around. It is necessary, VERY NECESSARY, that each team advertise in the local newspaper or at the local college or university to find new, green therapists. It is necessary to our ABA community that new therapists get trained so that we increase our pool of therapists.

Training a new therapist is not fun, I find it hard on my child and probably harder on me, because I worry. But MOST of the time, my pain results in gain. Within one or two months, my new therapist is up and running, feeling confident and appreciative that I gave him or her this opportunity to learn about ABA and be with my child. Often my therapists then go to work on other peoples teams.

Everytime you are out of your home, please look for good potential therapists. I have approached people in Chucky Cheese, at my daughters Choir audition, at the local pool, etc, and asked them if they would be interested EVEN WHEN I DIDN'T NEED THERAPISTS. I have sent these people to other teams, or got them to post on feat. IF EVERYONE DID THIS, WE WOULD HAVE LOTS OF WONDERFUL PEOPLE TO CHOOSE FROM FOR OUR TEAMS!

Please, for the sake of all our children, contribute to the therapist pool.
– look for and advertise for new people
– train new, green therapists

We will all benefit.

And a special thanks to those people who hired and trained the therapists I have been able to later bring to my team.

Nancy Walton

[Debra Antifaev]

I would like to follow along the line of Stephen's last brilliant post about the how the "one size fits all" approach (similar to the Government-cookie-cutter-discount-Autism-keep-the-civil-servants-employed-denying-our-children therapy…as I often refer to it) can actually damage our children.
I know only too well how tempting it is, when you are faced with losing your house (and your mind) to steal ideas from other people's programs and hope their strategies will work as well with your child…..it can often leave you with months of work to repair the "damage".
Very wise post, Stephen.
On that note, does anyone know anything about the "Learning for Autism" school through the Vancouver Resource Society announced in the Province paper this morning?
It is supposed to provide one-on-one attention to high needs students with Autism. I am praying it is a step in the right direction but I fear it will be another make-work program run/administrated by one of the discredited bunch.
Anyone heard?

Deb
Ben's Mom

[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.

[Deleted User]

This is in response to Tony's email regarding SLP services. I do not know much about SLP curriculum so I'm afraid I can't recommend any tracking tools. I can however recommend an excellent Speech Path whom I have had the pleasure of working with. She is very ABA friendly, very cooperative with teams and parents and fully willing to teach and explain all that she does. Her name is Ginny Martin. I'm not sure how comfortable she would be with my giving out her email address to the masses. I'm pretty sure her name is on the ASBC list. If it is not there please email me at Michelle_Karren@hotmail.com, and I will send you her information.

[Deleted User]

Tony — Brijanresources.com has many great programming resources (thinking publications, ecl publications pro-ed publications to name a few) of which I came across a CD-ROM resource I wish I had called “Normal Development: A Database of Communication and Related Behaviours” which tracks developmental milestones from birth – 12 years. It says it covers phonology, semantics, cognition, syntax, pragmatics and fine & gross motor skills. The product says it is fully searchable and The listed cost is $128 Cdn. and the best part is with Brijan you can order software/books, review them and if they’re not for you return them for full refund. And shipping is free! Hope this helps.

t

[Author]

Replies