Kelly,

Welcome to the group!  I feel for you and appreciate your diligence in
wanting to provide the best service for your ALS patients.  It is a
steep hill to climb, but keep at it!

My advice with specific regard to AAC equipment would be to contact all
of the eye gaze reps in your area.  When it comes to high tech/eye gaze
AAC, support is king.  Find out which reps will provide good support as
this will take some work off of your plate - at least while you work on
the other needs.  They should also help with any insurance paperwork and
provide some templates that you can work off of - it is always
intimidating starting with a blank piece of paper.

I will let other respond with regard to your other questions, but I
would say in my experience, with cognitive intact, literate adults -
getting to the point where the PALS is using their device for
communication is not a long process - it is more of a function of
providing proper access.  Once that is established, it is typically not
a long process to get communicating - unless you are dealing with some
sort of unusual eye issue.  Also, as the patients progress, additional
support may be needed to help maintain access.  This is why early
introduction is so important.  This way you know that the person
understands the system, and you can focus on addressing access issues.

Along those lines, you may want to get an OT involved to assist with the
access piece - more heads are always better.

If it is at all possible, visiting a well established ALS clinic would
be of great value - seeing how others have solved these problems will
save you a TON of time and effort.

Attending ALS conferences and staying connected with the organization is
helpful - they have webinars on a regular basis and often address AAC
needs -  here is a link to the archived ones -
http://www.alsa.org/als-care/resources/webinars.html




Sincerely,

Antoinette Verdone, MSBME, ATP
Owner, Rehabilitation Engineer
ImproveAbility, LLC
Office/Text: 512-522-1705
Cell: 512-497-6026
Email: xxxxxx@improveability.com
Web: www.improveability.com
Fax: 888-501-1009
3310 W Braker Lane, Suite 300-424, Austin TX 78758


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

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-------- Original Message --------
Subject: AAC Help
From: "Mangione, Kelly" <xxxxxx@SITRIN.com>
Date: Sat, May 13, 2017 2:45 pm
To: "'xxxxxx@alsa.simplelists.com'" <xxxxxx@alsa.simplelists.com>

  Hello,
 I am fairly new to the world of ALS as well as have limited background
with AAC. The following topics/questions come to mind:

 Eye gaze technology:
 Are there any statistics on rate of use with an eye gaze device (i.e.,
similar to how many wpm one can type)?
 Also any thoughts on how long it typically takes a patient to learn how
to efficiently use an eye gaze device for basic communicate needs?
 We have had good luck borrowing eye gaze devices from the local ALS
association.

 Other AAC Options:
 I am working on an inpatient unit so obtaining new devices is not easy
as well as not always time efficient by the time a patient requires care
24/7. In simple terms (remember-I’m a newbie J), what are some
favorite quick, effective, and cost friendly communication options that
could be purchased to have on hand? I’m also struggling with AAC
options that work well with our cognitively impaired ALS patients so
thoughts are welcomed.

 For verbal patients with no bulbar symptoms when should AAC be
introduced-again in an ideal world I understand sooner is better but
with limited resources, limited staffing, limited staff experience, and
varying cognitive statuses I’m trying to prioritize the best I can.

 I’m trying to understand the norms to help support our staffing
needs, set realistic goals for treatment as well as daily time
management. Ugh and goals-that is hard to measure too. I am trying to be
proactive and do my “homework” but the info is limited in some
regards, requires you to be very tech savvy and/or is put in terms of an
ideal situations/settings such as being able to have access to all AAC
options and/or having time to dedicate the whole work day to ALS and
AAC.

 I greatly appreciate any information, resources, etc that anyone is
willing to share.

 Thank you,
 Kelly

 Kelly Mangione, MS, CCC-SLP
 Speech-Language Pathologist
 Charles T. Sitrin Healthcare Center
 2050 Tilden Avenue
 New Hartford, NY 13413
 (315) 737-2462
 Fax (315) 735-7804



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