Margaret,

My experience has been that even those PALS who initiate the AAC evaluation and purchase tend not to use the AAC very much, or at all, once they receive it. I find that for whatever reason most PALS do not have a great urge to communicate...certainly not at the level that we might expect to be present.  Usually it is family members who seem to want the PALS to use an AAC device because the family is frustrated trying to understand.

I find that I am more successful getting them to purchase the AAC than I am getting them to use the device after the purchase/delivery.  I try to encourage PALS who have AACs to use their devices at support group meetings, but even among their peers the majority do not seem to want to communicate through these devices. They bring them but they don't use them (or maybe it is the caregiver who is bringing it to the meeting).

I give them a list of reasons why they might want to have an AAC sooner than they might think they should consider one (e.g., learning curve, loss of opportunity after hospice enrollment, etc.) and for later when they truly cannot communicate (e.g., to let their caregiver know where to scratch an itch).  I also try to explore their unique reasons for not wanting to even try a device, but their answer is generally a shrug.

Maybe it is a control issue...being in control of whether or not they communicate through an AAC device may feel to them like one of the very few things they can control.

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 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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