Hi Judie- I think so much depends on personal preference- I also had many clients who didn't want their partner looking over their shoulder while they were constructing their message- they would rather put their whole message together, then speak it out loud. ------------- Having this conversation/thread has helped me to clarify my original question re: Non-Acceptance. I realize, I should have clarified, and made the distinction between low tech and high tech. In retrospect, the question could be broken down into separate questions- 1. Why do some people have non-acceptance about starting the evaluation process for an SGD? 2. Why do some people, once they have the device, not use it? My personal feeling was that if my client could communicate, I was happy. (Sometimes it would drive me a little crazy when I would have a elderly person with bulbar onset who was happy writing, and their adult children would say "Mom! Use the device!" (even though writing was more comfortable and faster and efficient). My personal feeling was "As long as you can communicate, however you do it, I'm happy.) Margaret -----Original Message----- From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Judie Benwick Sent: Friday, June 06, 2008 9:29 AM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS The feedback I have received regarding text to speech programs is along these lines..."I would rather just type what I want to say and then let my caregiver, or the person sitting next to me, read the screen." Hard to argue with that point of view. One of the PALS I assist does find value and enjoyment in using a combination of text to speech and a webcam and microphone to communicate with his parents who live out of town. He finds that "much more personal and way more fun" and he has put together a tutorial to teach other PALS how to get started with this. Judie Judie Benwick, MSH, MPH Care Coordinator The ALS Association, Florida Chapter 3242 Parkside Center Circle, Tampa, FL 33619 (Toll-free) 888-257-1717, ext. 112 (Jacksonville) 904-688-0886 (Fax) 904-685-5203 The ALS Association's eStore offers a variety of unique apparel and one-of-a-kind gifts for all occasions. To shop the eStore, go to www.alsa.org and click on the eStore link, found "On The Inside". -----Original Message----- From: xxxxxx@xxxxxxxxxxxxxxxxxxxx on behalf of Jane Huggins Sent: Fri 6/6/2008 11:13 AM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS I'm not directly working with PALS (doing research on AT for AAC, etc). But, I find this topic very interesting as well. For your head-mouse user, I wonder if the computer and email was sufficient high-tech communication for him. If he wanted to spend the set-up time on getting headmouse on and using a system, he probably spent it on his computer. And his computer could serve as communication to his caregivers. The low tech stuff would fill a felt need without requiring much setup and therefore would be useful for casual conversation. Not sure if this hypothesis fits, but it would be interesting to find out. Actually, I'm curious about why you didn't just add text-to-speech to his computer system when the need came for AAC. %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% Jane Huggins, Ph.D. "Who cares what time it is in eternity?" xxxxxx@xxxxxxxxx -- John K. Smith %%%%%%%%%%%%%%%% http://www-personal.umich.edu/~janeh %%%%%%%%%%%%%%%%%% On Fri, 6 Jun 2008, Antoinette Verdone wrote: > > 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) > > > > >
