AAC Acceptance by Persons with Amyotrophic Lateral Sclerosis

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AAC Acceptance by Persons with Amyotrophic
Lateral Sclerosis Ball, L., _at_Beukelman, D.,
Pattee, G., Anderson, E. University of
Nebraska Medical Center, University of
Nebraska-Lincoln, _at_Institute for Rehabilitation
Science Engineering
RESULTS AAC Acceptance
Reasons for Delayed Acceptance 1. Resistance of
family member I can understand everything I need
to I can take care my spouses needs just
fine! 2. Resistance of Physician You dont need
to bother with that, you are going to die soon,
anyway. (once, several years ago) 3. Initial
Resistance of PALS My speech isnt affected and
probably wont be.Im not disabled!I simply
dont need or want that.I think I can get by
without that.
PURPOSE To investigate the acceptance of AAC
technology (1) By persons with ALS (PALS) for
whom AAC had been recommended (2) By their
decision-making network
AAC Technology Facilitators
PARTICIPANTS N 68 persons with ALS (39 males
29 females representative of ALS incidence
data) For whom AAC intervention had been
recommended because of progressive motor speech
disorder, evidenced by slowed rate of speech
and/or dysarthria of speech.
AAC Acceptance by Gender
Reasons for Rejection For two (1 bulbar, 1
spinal) PALS who rejected AAC Technology
entirely, cognitive limitations were viewed as
the primary reason by both the family members and
clinicians (both exhibited a prefrontal-type
dementia sometimes associated with ALS that
results in resistance to new things, and
inflexibility of thought, and changes in
personality). A third PALS (bulbar) rejected
related to depression and multiple medical
conditions (ALS CA)
PROCEDURES All PALS were seen for ongoing
assessment of their communication needs through a
regional multidisciplinary Muscular Dystrophy
Association Clinic (typically scheduled
quarterly). AAC assessments were typically
completed in a single session when the PALS
reached a sentence intelligibility (90 or lower)
or speaking rate (130 wpm or lower)
criterion. Communication related intervention
outcomes were recorded in a database. AAC
acceptance, use, and rejection were monitored.
Implications PALS have a strong desire to
communicate their needs wishes and to continue
their lives as typical for as long as
possible. Follow up on an ongoing basis, with
input from a SLP resulted in delayed acceptance
of several PALS who would have been considered as
rejectors if seen for only a single visit. With
a range of AAC technology available to allow for
individual preferences, only very few PALS will
ultimately reject its use, typically due to
cognitive difficulties. These cognitive
difficulties may not prevent AAC interventions,
however when enough time is available for
adequate learning. The majority of facilitators
for AAC technology were female.
ACCEPTANCE CATEGORIES Initial Acceptance PALS
completed an AAC assessment, decided to obtain
AAC technology and used AAC technology. Delayed
Acceptance PALS initially rejected an AAC
assessment or rejected purchase of AAC Technology
after assessment, but later approved purchase of
AAC technology and used it to communicate. Rejecti
on PALS rejected an AAC assessment or purchase of
AAC technology until his or her death.
Reasons for Immediate Acceptance Need to
communicate with family members at home and at a
distance Need to communicate with friends
Desire to continue employment Desire to
continue involvement in community activities
Desire to have something to do Need to
communicate medical needs Desire to write
their story
AAC Technology Accepted AAC Technology Number DV4/
Dynavox 2 MT4/DynaMyte 6 DynaWrite 2 Freedom
2000 25 Enkidu Palm 7 Enkidu Tablet 1 Enkidu
Handheld 14 LightWriter 3
This presentation is available at
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