Another thought -- I wonder how much of this need for "human connection" will change as people who grew up with email/text messaging, etc come "up the ranks" (for lack of a better way to say this). I personally think that the move away from the human connection is depressing, but it seems to be the way we are going -- I have literally seen people sit at the same table and text message instead speaking to each other!!! Will this bleed into AT Acceptance? Or will the lack of other interactions still cause people to desire the human back and forth of communication, regardless of the use of technology in their pre-ALS life? 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 Lisa Bruening Sent: Fri 6/6/2008 11:51 AM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS 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 <http://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) </pre><p><tt><<winmail.dat>></tt></p>
