Hello to all,

I think Antoinette hit the nail on the head!

I believe it has A LOT to do with the human connection.

Anecdote:  I've worked with a woman for 5 years now who has progressed from
using 2 hands with a Lightwriter to now being completely paralyzed, vent
dependent and limited eye movements.  She was able to use an eye gaze system
during an extended trial but never really "bought into" it.  She much
prefers listener assisted auditory scanning.  I guess if I think about it,
and put myself in her shoes, "I'm completely paralyzed, I have no way of
interacting with my environment, I cannot effect change or control on
anything or anyone in my environment-staff are paid to attend to my physical
needs but not to really interact with me-however, if I need to communicate,
I have one on one interaction with a person who has to pay attention to
slight movements of my eyes to spell out letter by letter my thoughts and
words."  Talk about control!  She even "yells" or disciplines them as they
spell out her message and interpret her eye movements.

She is now in a skilled nursing facility and pays young college students to
sit by her side, spell out her messages and signal for staff when she has
physical needs.

Oh how we wish the brain wave technology was closer at hand-but she has
already stated she would not wear that skull cap-even if it meant
intellectual freedom and interaction again!

Go figure!

Has anyone read and/or seen the Butterfly and the Diving Bell?  (is that the
name?)

Lisa M. Bruening, M.S., CCC-SLP

Program Services Coordinator

The ALS Association, Northern Ohio Chapter

phone: 216-592-2572

toll free:  888-592-2572

fax:  216-592-2575

Check out our new website format at www.alsaohio.org

Become an ALSA Advocate!  It's easy!

Go to our website and follow the tab for Public Policy. Click on Advocacy
Action Center and sign up today!

  _____

From: xxxxxx@xxxxxxxxxxxxxxxxxxxx
[mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Antoinette Verdone
Sent: Friday, June 06, 2008 10:23 AM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for
people with ALS

I am not usually part of the conversation when going for an eval is
presented to the PALS, but I have discussed with those who are, that
"selling" the AAC as computer access/ECU can be a way to get patients to go
for the eval, and I have heard of those who this has worked for.

But on the flip side, I get donations of AAC that have never been taken out
of the box.  So, are we forcing tech onto people?

A short anecdote -- I have a PALS who was an avid head mouse user and was on
the computer constantly with email and internet.  Once his speech got to the
point where an AAC was warranted, I thought it would be a easy transition
for him.  He was set up with a Mercury with a head mouse, but he just was
not into AAC.  I visited him recently and showed him some low tech
communication aids, and he thinks that these are better than the electronic
AAC!?  This is puzzling to me as to why going from using the head mouse for
computer access to using it for communication was just not ok in his book.
For this particular PALS I think that the human disconnect was the issue.
With the low tech AAC, he has more human contact, which I guess feels more
like communication than typing stuff into a computer?  Just my impression.

I find this topic very interesting.  I think a lot of this is control, but
then why would someone not want to be understood if the technology exists to
provide clear communication?

Antoinette Verdone, ATP

Assistive Technology Specialist

ALS Association, Greater New York Chapter

116 John Street, Suite 1304

New York, NY 10038

Phone: 212-720-3054

Fax: 212-720-3054

xxxxxx@xxxxxxxxxx

"One cannot cosent to creep when one has the impulse to soar." -- Helen
Keller

  _____

From: xxxxxx@xxxxxxxxxxxxxxxxxxxx on behalf of Margaret Cotts
Sent: Thu 6/5/2008 7:43 PM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: [Assistive Technology] AAC Acceptance / Non Acceptance for people
with ALS

 Hi -

I have been thinking a lot lately about AAC acceptance in terms of people
with ALS (i.e. using AAC, or even starting the evaluation process .)

(By the way, I was talking to Alisa Brownlee, and she made a good point- she
mentioned that that "Un-acceptance" was a better term than "denial", because
some people aren't in denial- they know perfectly well that they have a
problem, but they aren't ready to accept using AAC yet.)

I'm curious to hear about different strategies people use when working with
clients who aren't ready to start the evaluation for an SGD/use AAC (even
though it may be time.)

I was trying to think of different "strategies" I used with clients, for
example- (I think I would gauge what I would say, depending on what I
thought the person could handle... Some people get that "deer in the head

a.       (SLIGHTLY DECEPTIVE/DEFLECTIVE) (I can't think of another word for
it-)  "I hear that you are not ready to start the process, but sometimes it
can take several months to get a device through insurance. I would rather
you have it and not need it, than need it and not have it."

b.      CARROT - "I hear you aren't ready to use the device yet, but you can
use it as a remote control, and  get it unlocked and use it for email."

c.       DIRECT-  Just being straightforward

d.      BRUTALLY DIRECT  Over the years I had a couple of clients who just
would not do the evaluation for an SGD- with some of them I felt I had to be
really really direct.

Thanks for your thoughts on this...

Margaret

Margaret Cotts, MA, ATP
DynaVox Technologies & Mayer-Johnson

Regional Education Specialist
Greater San Francisco Bay Area

(866) 396-2869 x7984
(510) 282-0895 (cell)

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