March 10, 2005 Revision
ALS Module for AAC Courses
The original draft of this module was developed by an “ALS Speaks” task force to facilitate the
inclusion of Amyotrophic Lateral Sclerosis (ALS) specific content in general introductory or overview
courses in augmentative and alternative communication (AAC). The module is designed to cover the
most important aspect of ALS in one or more lectures in an AAC course. It may also be of some
benefit to instructors of motor speech disorders courses when they cover ALS. The target audience is
students enrolled in speech-language pathology (SLP) university training programs. The emphasis is
on AAC because it is anticipated that students in such programs will also have dysarthria and motor
speech disorders courses, which cover other critical aspects of ALS assessment and intervention
including swallowing disorders.
This module provides: acronyms, learner outcomes, a topic outline with some elaboration of
the topics, which are specific to ALS (e.g., the intervention stages, assessment emphasis, and some of
the issues related to changing abilities); questions, which may be used to help stimulate discussion
(and/or for testing); instructional resources including websites and videos; and references organized in
the categories of AAC texts, other books (and chapters), and articles.
In addition to the ALS module, an appendix is provided because currently there is a wide
variation in how and what is taught by faculty at the 122 universities that report having an
introductory, overview or basic AAC course. A number of different texts are used for AAC courses,
but most courses use one of three relatively broad AAC texts published in the late 1990s. The ALS
module (including the Appendix A) makes reference to specific portions of the two texts (Beukelman
& Mirenda, 1998; Lloyd, Fuller & Arvidson, 1997), which specifically address the topic ALS.
L. L. Lloyd, 2003, 2004, 2005. All rights reserved. No part of this module may be
reproduced or transmitted in any form or by any means, electronic or mechanical, including
photocopy, recording, or any information storage and retrieval system for profit or
commercial purposes, without permission in writing from Lyle L. Lloyd. However,
permission is granted to reproduce any part of the module, with the copyright notice,
for instructional purposes and not for sale.
The module was initiated as part of an ALSA Task Force (see acknowledgements at the end
of the module). It is posted on the web to share the information with individuals teaching
courses and/or providing in-service programs on AAC and/or ALS. The website will be
revised periodically. Your content suggestions and technical edits are welcomed. Please
send your input to <lloydAAC@purdue.edu>.
Thanks for any information you can provide. - - Lyle L. Lloyd, Chair, Professional Education
Committee, ALS Speaks Task Force
Lyle L. Lloyd, Ph.D., C.C.C. - A & SLP
Professor of Special Education, and Professor of Speech, Language, and Hearing Sciences
Purdue University, 100 N. University Street, West Lafayette, IN 47907-2098, USA
L.L.Lloyd, 2003, 2004, 2005
1
Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic lateral sclerosis (ALS): A progressive, degenerative neurological disease or motor
neuron disease (MND) of unknown etiology in adults that affects motor neurons of the brain and spinal
cord resulting eventually in total loss of muscle function and death; often referred to as Lou Gehrig's
disease.
ACRONYMS
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AAC: augmentative and alternative communication
ALS: amyotrophic lateral sclerosis
ALSA: amyotrophic lateral sclerosis association
EBP: evidence-based practice
FTD: frontotemporal dementia
MND: motor neuron disease
PALS: person(s) with ALS
SGD: speech-generating device
SLP: speech-language pathologist
TDD: telecommunication devices for the deaf
LEARNER OUTCOMES
 Understand the nature and the progression of the disease as well as its impact on daily functioning,
including communication
 Understand the issues unique to persons with ALS (PALS) that influence AAC assessment and
intervention
 Identification of upper and lower motor neuron functions/pathways and the impact of motor neuron
impairments on speech
 Identification of spastic, flaccid, and mixed spastic-flaccid dysarthria characteristics
 Selection and appropriate administration of motor speech assessment procedures involved with
PALS
 Determining appropriate timing of AAC intervention for persons with ALS
 Participation in an ALS clinic or evaluating a videotaped assessment/intervention involving PALS
 Selection and administration of AAC evaluation procedures for PALS
 Identification of funding for AAC services and devices for PALS
 Understanding roles of interdisciplinary team members in AAC evaluation and intervention for
PALS
L.L.Lloyd, 2003, 2004, 2005
2
 Understanding psycho-social issues that influence AAC acceptance and use
TOPIC OUTLINE
1. Need to Educate Others – Importance of AAC for PALS and the need for early referral to SLP.
SLPs often do not get a referral until or close to the final stage of the disease or do not get a referral
at all. Some education points to consider are:
a. Seventy-five to eighty percent of persons with ALS experience speech disorders so severe
that they require AAC at some point in their lives (Saunders, Walsh, & Smith, 1981).
b. AAC has been shown to be a successful way to communicate for persons with severe
speech disorders due to ALS.
2. Overview of ALS (age of onset, prevalence, progression, types, etc.)
a. Wide range of onset (mostly between 30 to 60 years) with the mean onset in the 50s.
b. Incidence ranges between 1 and 2 per 100,000 population (Yorkston, Beukelman, Strand &
Bell, 1999).
c. Relatively rapid progression, but may plateau for periods of time with approximately 60% of
patients surviving less than five years.
d. A common clinical tool for the assessment of the symptoms and progression of PALS is the
ALS Severity Scale. This scale has several domains including speech, swallowing, lower
extremities (walking), and upper extremities (dressing and hygiene). Each domain is based on
a 10-point subscale. The Speech Subscale is used to determine a patient’s speech functions and
is described in further detail in Section 3 (Yorkston, Miller & Strand, 1995).
e. Bulbar (brainstem or upper motor neurons), spinal cord (lower motor neurons) and mixed
(bulbar & spinal cord) are different ways to categorize the types of ALS.
Bulbar ALS is a form of amyotrophic lateral sclerosis wherein affected individuals usually
experience dysarthria early in the disease process, and deterioration of their speech and
swallowing functions may be rapid. Motor impairments are usually less extensive until much
later in the disease process, thus PALS are usually able to control direct selection AAC
techniques using their hands or fingers. Most PALS retain cognitive capabilities.
Spinal ALS is a form of ALS, which refers to predominant involvement of the spine. These
individuals may retain normal or mildly dysarthric speech for a considerable period of time,
even as they experience extensive motor impairments in their trunks and limbs. For these
individuals, the need for an augmented writing system often precedes the need for a
conversational system.
f. Typically language is intact.
L.L.Lloyd, 2003, 2004, 2005
3
g. There is a continuum of cognitive dysfunction in ALS, ranging from mild cognitive impairment
to a more fulminant progressive dementia of the frontotemporal type (FTD) (in ~3-5% of
PALS). Bulbar ALS includes a greater risk for development of cognitive impairment. Typical
patterns of impairment relate to alterations in mental flexibility, verbal and nonverbal fluency,
abstract reasoning and memory, for both verbal and visual material (Strong et al., 2003;
Abrahams et al., 2004).
h. Individuals with ALS have speech characteristics that are classified as mixed dysarthria. There
are symptoms that are related to both spastic and flaccid dysarthria. Many patients have
specific characteristics of each, but not all. As ALS progresses, these specific characteristics
may change. Throughout the course of the disease, PALS usually experience more flaccid
dysarthria symptoms due to the profoundly weakening neuromuscular system. Many
perceptual features associated with ALS are present in both flaccid and spastic dysarthria such
as: imprecise consonants, hypernasality, and harsh voice quality. Some features are found in
only flaccid or spastic dysarthria. Low pitch, reduced stress, and strained-strangled voice
quality are found in spastic dysarthria; whereas, audible inspiration and nasal emission are
found in flaccid dysarthria (Yorkston, Beukelman, Strand & Bell, 1999).
3. Speech Stage Related Information (e.g., Yorkston, Miller & Strand, 1995; Yorkston, Strand,
Miller, Hillel & Smith, 1993). This information is also documented in greater detail in two
documents titled “Patient Clinical Pathway for Communication Changes with ALS” and “Speech
Pathologist’s Clinical Pathway for Communication Changes with ALS”. These are downloadable
as PDF files from http://www.aac-rerc.org/news/pathway_info.htm.
a. Stage 1: Normal Speech Processes. Patient may deny any difficulty speaking. In other cases,
only the patient or spouse notices that speech has changed. Patient maintains normal rate and
volume. ALS Severity Scale rating of 9 or 10.
b. Stage 2: Detectable Speech Disturbance. Speech remains easily understood, but changes are
noted by others, especially during fatigue or stress. ALS Severity Scale rating of 7 or 8.
c. Stage 3: Behavioral Modifications. Speaking rate is much slower than normal. The speaker
repeats specific words in adverse listening situations and may limit the complexity or length of
messages. ALS Severity Scale rating of 5 or 6.
d. Stage 4: Use of AAC. Intelligibility problems need to be resolved by writing or a
spokesperson. The speaker may initiate communication nonvocally. ALS Severity Scale rating
of 3 or 4.
e. Stage 5: Loss of Useful Speech (continued use of AAC). Speakers may not use vocal
inflection to express emotion, affirmation, or negation. ALS Severity Scale rating of 1 or 2.
L.L.Lloyd, 2003, 2004, 2005
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4. Assessment Issues
a. ALS Severity Scale may be used to assess speech, swallowing, lower extremities (walking),
and upper extremities (dressing and hygiene) issues.
b. In addition to the person with ALS, it is important to consider the communication partners, the
environments (including communication contexts) and the AAC system.
c. It is critical to pay attention to the ongoing nature, and the principle of the interrelatedness of
assessment and intervention. As part of this we monitor progress and data collection as
extremely critical (see Beukelman & Mirenda, 1998, Fig. 6.1 and/or Lloyd et al., 1997, Fig
11.1).
d. Assessment covers the areas of cognition, language and communication, motor abilities, and
sensory abilities. Although all four areas are important, language is not as important because
language problems are not associated with ALS any more than in the general population. The
screening approach and more observation are used to assess language of PALS. PALS usually
retain cognitive and linguistic functions as ALS progresses, which means they are able to
understand and relate to the world around them and formulate messages similar to other adults.
The primary emphasis is on motor and sensory abilities. The prevalence of sensory
impairments is not greater in PALS than it is with the general population; however, it becomes
an important area with older PALS because of both the use of SGDs and increased prevalence
of auditory and/or visual impairments. When considering AAC, it is also important to consider
the sensory abilities of the primary communication partners.
e. Motor abilities greatly affect the selection of an AAC system. These abilities vary greatly
among PALS, depending upon whether the person first experiences bulbar or spinal symptoms.
A person with predominantly bulbar symptoms is usually able to operate AAC devices via
direct selection for some time. For a patient with predominant spinal symptoms, motor
impairments in the trunk and limbs are much more extensive. A motor access site that can
produce accurate and non-fatiguing movement is necessary for spinal ALS patients
(Beukelman & Mirenda, 1998). This access site may need to change through the progression
of the patient’s disease.
f. The ongoing monitoring of speech is one of the critical aspects of the assessment of PALS.
Rate (and intelligibility) assessment with something such as the Sentence Intelligibility Test
(SIT; Yorkston, Beukelman and Tice, 1996). The Ball, Beukelman and Pattee (2002) article
provides a good summary of data, which is quite useful in evidence-based practice (EBP). This
article also includes a copy of the Communication Effectiveness Scale which is part of the
Nebraska protocol.
g. The “Patient Path” and “Clinical Path” provide a summary of the changes in assessment over
the five stages (Trautman, J., Ourand, P., Bardach, L., Vess, G., Caves, K., & DeRuyter, F.,
2002; Vess, G., Bardach, L., Trautman, J., Ourand, P., Caves, K., & DeRuyter, F., 2002).
N.B. The following three sections present several different ways to organize the intervention aspects of
the module (by stages, by groups, etc.)
L.L.Lloyd, 2003, 2004, 2005
5
5. AAC Intervention using Speech Stages as the Organizer (modified from: Yorkston et al., 1995)
a. Stage 1. Normal Speech Processes
 Provide counseling including disease progression, intervention options, resources and
support
b. Stage 2. Detectable Speech Disturbance
 Minimize environmental difficulties
 Establish compensatory strategies including rate and articulation adjustments, use of
gestures and facial expression, and the use message context
 Establish listener strategies including eye contact
 Teach strategies for coping with groups
c. Stage 3. Behavioral Modifications
 Maintain a slow speaking rate
 Conserve energy
 Fit with a palatal lift
 Develop strategies to resolve communication breakdowns
 Increase the precision of speech production
d. Stage 4. Use of AAC Augmentative Communication
 Alphabet supplementation
 Changing communication modes for different situations
 Altering systems
 Telephone communication portable writing systems
 Multipurpose systems
e. Stage 5. Loss of Useful Speech (continued use of AAC)
 Yes/no systems
 Eye-gaze systems
 Communication for patients on ventilators
6. Interventions Using Group as the Organizer (classification of upper and lower extremity
function and speed: Mathy, Yorkston, & Gutmann, 2000).
a. Group 1: Adequate Speech and Adequate Hand Function - Individuals in this group have
functional speech but behavior modifications, such as slowed speaking rate and frequent
repetitions, are often necessary. Intervention involves introducing the individual to AAC
approaches and taking baseline measures in such areas as velopharyngeal sufficiency, speaking
rate, and vital capacity.
b. Group 2: Adequate Speech and Poor Hand Function - In this group, individuals are severely
impaired in their ability to write due to poor hand functioning. Computers that are adapted to
meet the individual’s needs are greatly considered as a means of augmenting written
communication. Computer adaptations include a modified keyboard, a mouse or a trackball,
single-switch scanning, and ocular movement access systems.
L.L.Lloyd, 2003, 2004, 2005
6
c. Group 3: Poor Speech, Adequate Hand Functioning, and Adequate Mobility - Most
individuals in this group prefer using handwriting to supplement face-to-face conversations.
Another effective technique that is often used to repair a communication breakdown is known
as alphabet supplementation. In this technique the individual points to the first letter of each
word as it is spoken to provide the listener with additional cues. However, some individuals
with ALS have difficulty with this technique due to impairments in executive functioning. Due
to the fact that these individuals are usually independent and mobile, there is also need for a
method of telecommunication. Some examples are personal computers with talking word
processors, fax machines, or telecommunication devices for the deaf (TDD).
d. Group 4: Poor Speech, Adequate Hand Functioning, and Poor Mobility - Individuals in
this group use wheelchairs for mobility and AAC devices for communication. An important
consideration is where to mount the AAC device since many patients with ALS only use their
wheelchair for longer distances. Therefore, the various environments in which an ALS patient
needs to communicate should be taken into account.
e. Group 5: Poor Speech, Poor Hand Functioning, and Good Mobility - Since individuals in
this group are unable to carry a device and manipulate it, unassisted and low-tech strategies are
necessary for augmenting communication. Examples of low-tech strategies include partnerassisted manual scanning and partner-assisted auditory scanning. Partner-assisted manual
scanning is a technique in which the partner holds up an alphabet display and the individual
scans it until the desired element is reached. With partner-assisted auditory scanning, the
process is the same except the partner verbally lists the elements. For both strategies, the
process is repeated until the entire message is received.
f. Group 6: Poor Speech, Poor Hand Functioning, and Poor Mobility - If not already using
low-tech or high-tech AAC aids and techniques, individuals in this group should be provided
with unassisted and low-tech strategies, such as partner-assisted auditory and visual scanning,
and optical pointing. An evaluation should also be conducted to determine if the individual
is able to use a high-tech device.
7. General Intervention Issues
a. Family/caregiver/client issues (e.g., acceptance, willingness to pursue technology, grief, etc.).
b. That different types of AAC strategies and technology (SGD & writing devices) are required to
provide appropriate AAC services to people with ALS.
c. That the timing of ALS assessment and intervention is critical for appropriate clinical practice
and that speaking rate and intelligibility are the best predictor of the timing of speech
deterioration in ALS.
b. Plan for AAC system to accommodate the progression of the disease.
c. Discussion of alternate access modes and future technology (e.g., advanced eye gaze access and
brain wave interfaces).
d. Benefits of "effort saving" technology, e.g., word prediction, etc.
L.L.Lloyd, 2003, 2004, 2005
7
e. Employment and AAC
f. Loan library models
8. Funding Issues
a. Most medical insurance covers SGDs as either prosthetic devices or durable medical equipment
because they consider the ability to communicate a medical necessity.
b. Medicare is a major funding source for AAC devices for PALS. Typically, it covers SGDs,
battery packs, wheelchair mount and switches if required. It will not cover accessories (e.g.,
CD drives, carrying cases, wheelchair battery adapters, etc.) (ALSA, 2004).
c. Assessment by a SLP is required for coverage.
d. The device must be dedicated to speech generation. In other words, software or hardware for
internet access and or environmental control cannot be features of the device.
e. Alternative funding options other than Medicare and private companies are the Department of
Veterans Affairs, ALSA loan programs, the Muscular Dystrophy Association, and local charity
and service organizations.
STUDY QUESTIONS
1. When is the most appropriate timing for an AAC evaluation?
2. What aspects of access to AAC must be considered with PALS?
3. Are there categories of PALS for various AAC & access needs?
4. How do PALS differ from other neurological/developmental diagnoses for AAC? Do PALS benefit
from AAC use?
5. When and why is low technology AAC intervention recommended?
6. When and why is high technology AAC intervention recommended?
7. What AAC device categories do PALS use most commonly?
8. How do the diagnostic category of ALS certainty and ALS onset type impact AAC interventions?
9. Is funding available for AAC to PALS? If yes, are there specific criteria that must be met to
qualify?
10. Do personal attitudes/beliefs about technology, mechanical ventilation, etc. impact PALS’
acceptance of AAC?
L.L.Lloyd, 2003, 2004, 2005
8
11. What patient characteristics (e.g., literacy, age, etc.) impact acceptance?
12. What new idea(s) were gained from the readings?
13. What previous thoughts were confirmed from the readings?
14. How did the information relate to other content from this class or outside (include outside
references)?
15. What application can be made to my role as SLP from the content of the readings? Specifically
address how to apply the information to assessment and/or intervention.
16. What attitudes/beliefs/biases do I hold that are challenged or have I become aware of as a result of
this reading and discussion?
INSTRUCTIONAL RESOURCES
1. Websites
a. http://www.aac-rerc.com
This site is included for funding information. Click on “Medicare Funding of AAC devices” link as
developed by the 2001-2004 Medicare Implementation Team. They ask you to reference this
information as “AAC-RERC website. http://www.aac-rerc.com -- Medicare Funding of AAC
Technology. Information obtained on ______ (you MUST specify the date). Supported in part by the
National Institute on Disability and Rehabilitation Research (NIDRR).”
b. http://aac.unl.edu/CASE/case1.html
c. http://www.alsa.org (This site is included for general information about ALS.)
d. http://www.kornreich.org
e. http://www.cini.org
2. Videotapes
Hewitt, D. (Executive Producer). (1999, February 28). 60 Minutes: Choosing Life (A.L.S.) [Television
Broadcast]. New York: CBS Television Network.
Mathy, P. (Presenter). (2000). Augmentative and alternative communication intervention in individuals
with amyotrophic lateral sclerosis (ALS) [Motion Picture]. (Available from TELEROUNDS,
National Center for Neurogenic Communication Disorders, University of Arizona, P.O. Box
210071, Tucson, AZ 85721)
L.L.Lloyd, 2003, 2004, 2005
9
3. Handouts and Reproducible Forms and Materials
Trautman, J., Ourand, P., Bardach, L., Vess, G., Caves, K., & DeRuyter, F. (2002). Patient’s clinical
pathway for communication changes with ALS. Retrieved February 24, 2005, from Duke
University Medical Center Web site: http://www.dukespeechandhearing.com (also available at
http://www.aac-rerc.com).
Trautman, J., Vess, G., Caves, K., & DeRuyter, F. (2002). Patient’s clinical pathway for swallowing
associated with ALS. Retrieved February 24, 2005, from Duke University Medical Center Web
site: http://www.dukespeechandhearing.com (also available at http://www.aac-rerc.com).
Vess, G., Bardach, L., Trautman, J., Ourand, P., Caves, K., & DeRuyter, F. (2002). Speech
pathologist’s clinical pathway for communication changes with ALS. Retrieved from Duke
University Medical Center Web site: http://www.dukespeechandhearing.com (also available at
http://www.aac-rerc.com).
Yorkston, K. M., Miller, R. M., & Strand, E. A. (1995). Management of Speech and Swallowing in
Degenerative Diseases. Tucson, Arizona: Communication Skill Builders. (pp. 76-85
Reproducible Forms such as: Clinical Examination for ALS, ALS Severity Scale, Swallowing
Disorders Interview Worksheet).
4. PowerPoint Presentations of All, or Part, of this Module
Wendt, O. & Lloyd, L. L. (2003). ALS and AAC. A PowerPoint module for AUS 540/EDPS 562
“Augmentative and Alternative Communication.” West Lafayette, IN: Purdue University
(available upon request, please e-mail lloydaac@purdue.edu)
5. Books and Selected Chapters
Albom, M. (1997). Tuesdays with Morrie: An old man, a young man, and life’s greatest lesson. NY:
Doubleday.
*Beukelman, D. R., Yorkston, K. M., & Dowden, P. A. (1985). Augmentative communication. A
casebook of clinical management. San Diego, CA: College Hill Press.
Beukelman, D. R., Mathy, P., & Yorkston, K. M. (1998). Outcome measurements of motor speech
disorders. In C. Frattali (Ed.), Measuring outcomes in speech-language pathology (pp. 334353). New York: Thieme Medical Publishers.
Brookshire, R. (1992). An introduction to neurogenic communication disorders. St. Louis, MO: Mosby
Year Book.
*Crow, E., & Enderby, P. (1989). The effects of an alphabet chart on the speaking rate and
intelligibility of speakers with dysarthria. In K. M. Yorkston & D. R. Beukelman (Eds.), Recent
advances in clinical dysarthria (pp. 99-108). Boston: College Hill Press.
*Dikeman, K. J., & Kazandjian, M. S. (1995): Communication and swallowing management of
tracheostomized and ventilator-dependent adults. San Diego, CA: Singular.
L.L.Lloyd, 2003, 2004, 2005
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Kazandjian, M. S. (Ed.). (1997). Communication and swallowing solutions for the ALS/MND
community: A CINI manual. San Diego, CA: Singular.
Kazandjian, M. (1997). Communication and swallowing solutions for the ALS/MND community: A
CINI manual. Albertson, NY: Communication Independence for the Neurologically Impaired.
Liebman, M. (1991). Neuroanatomy made easy and understandable. Gaithersburg, MD: Aspen
Publishers. (Note: Chapter 7: Pathway for voluntary muscle activity & Chapter 8: Pathway to
voluntary muscles of the head)
Love, R. & Webb, W. (1992). Neurology for the speech-language pathologist. Boston: ButterworthHeinemann. (Note: Chapter 6: Neuromotor control of speech, pp. 81-111, Chapter 8: Clinical
speech syndromes of the motor systems, pp. 137-164, & Appendix A: Synopsis of medical
conditions related to communication disorders, pp. 277-281)
Papathanasiou, I. (Ed.)(2000). Acquired neurogenic communication disorders: A clinical perspective.
London: Whurr Publishers.
Yorkston, K. M. (Ed.)(1992). Augmentative communication in the medical setting. Tuscson, AZ:
Communication Skill Builders.
Yorkston, K. M. & Garrett, K. L. (1997). Assistive communication technology for elders with motor
speech disability. In Lubinski, R. & Higginbotham, D. J., Communication technologies for the
elderly: vision, hearing and speech (pp. 235-261). San Diego, CA: Singular.
6. Articles
**Aere, C. L. (1998). Language and discourse performance in amyotrophic lateral sclerosis with
suspected cognitive impairment. Unpublished master’s thesis, University of Western Ontario,
Canada.
Ball, L., Beukelman, D., & Pattee, G. (2002, April). AAC clinical decision making for persons with
ALS. Perspectives in AAC, 11 (1), 7-13.
Bardach, L., & Newman, D. S. (2003, December). Augmentative and alternative communication in
ALS. Perspectives in AAC, 12 (5), 14-21.
*Beukelman, D. R., & Yorkston, K. M. (1980). Nonvocal communication. Performance evaluation.
Archives of Physical Medicine and Rehabilitation, 61, 272-275.
*Beukelman, D. R., Gorhoff, S. C., Kenyon, V. T., Mitsuday, P. M., & Yorkston, K. M. (1981). Canon
communicator use by adults. A retrospective study. Journal of Speech and Hearing Disorders,
46, 374-378.
Beukelman, D. R., & Garrett, K. (1988). Augmentative communication for adults with acquired severe
communication disorders. Augmentative and Alternative Communication, 4, 104-121.
L.L.Lloyd, 2003, 2004, 2005
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*Doyle, M. & Phillips B. (2001). Trends in augmentative and alternative communication use by
individuals with amyotrophic lateral sclerosis. Augmentative and Alternative Communication,
17, 167-178.
*Fosler, R. H. (1998). Looking for the right communication device. Communication Outlook, 18 (2/3),
6-8.
**Gordon, K. L. (1995). Living with terminal illness: A Descriptive Study of Persons with
Amyotrophic Lateral Sclerosis. Unpublished master’s thesis, California State University, Long
Beach.
*Hoffman, J., King, C., Wooltorton, S., & Lawrence G. (1999). George’s Gadgets: A multidisciplinary
approach to technology for communication in an individual with ALS. Perspectives, 23 (3), 1721.
**Horgan, S. L. (2001). Communication issues and ALS: A collaborative exploration. Unpublished
master’s thesis, University of Calgary, Canada.
**Klasner, E. R. (2003). Speech intelligibility in ALS and HD dysarthria: Everyday listener
perspectives of barriers and strategies. Unpublished doctoral dissertation, University of
Washington.
Lohr, K. N. (1994). Guidelines for clinical practice: Applications for primary care. International
Journal for Quality in Health Care, 6(1), 17-25.
Lohr, K. N. (1995). Guidelines for clinical practice: What they are and why they count. Journal of Law,
Medicine and Ethics, 23(1), 49-56.
Massman, P., Sims, J., Cooke, N., Haverkamp, L., Appel, V. & Appel, S. (1996). Prevalence and
correlates of neuropsychological deficits in amyotrophic lateral sclerosis. Journal of Neurology,
Neurosurgery and Psychiatry, 61, 450-455.
Mathy, P. (2003, April). Augmentative and alternative communication intervention in neurogenic
disorders with acquired dysarthria. Perspectives in AAC, 12 (2), 11-19.
Miller, R. G., Rosenberg, J. A., Gelinas, D. F., Mitsumoto, H., Newman, D., Dufit, R., Borasio, G. D.,
Bradley, W. G., Bromberg, M. B., Brooks, B. R., Kasarskis, E. J., Munsat, T. L., Oppenheimer,
E. A., & the ALS Practice Parameters Task Force (1999). Practice parameter: The care of the
patient with amyotrophic lateral sclerosis (an evidence-based review). Report of the quality
standards subcommittee of the american academy of neurology. Neurology, 52, 1311-1323.
*Murphy, J. (2004). Communication strategies of people with ALS and their partners. Amyotrophic
Lateral Sclerosis and Other Motor Neuron Disorders, 5 (2), 121-126.
*Nomura, Y. & Asakura, S. (2000). Title in Japanese. (Home support for ALS patients – A new
method of communication). Japanese Journal of Cancer and Chemotherapy, 27 (Suppl. III),
623-625.
L.L.Lloyd, 2003, 2004, 2005
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Riviere, M., Meininger, V., Zeisser, P., & Munsat, T. (1998). An analysis of extended survival in
patients with ALS treated with riluzole. Archives of Neurology, 55, 526-528.
Strong, M., Grace, G., Orange, J., & Leeper, H. (1996). Cognition, language and speech in
amyotrophic lateral sclerosis: A review. Journal of Clinical and Experimental
Neuropsychology. 18:2, 291-303.
Strong, M., & Rosenfeld, J. (2003). Amyotrophic lateral sclerosis: A review of current concepts.
Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 4, 136-143.
**Wendt, O. (2001). Kommunikationsförderung bei Erwachsenen mit Amyotropher Lateralsklerose
nach dem Ansatz der Augmentative and Alternative Communication (AAC). Eine Metaanalyse
US-amerikanischer Studien im Vergleich zu den Ergebnissen einer Expertenbefragung in
einem neurologischen Rehabilitationszentrum in Nordrhein-Westfalen. [Communication
intervention for adults with amyotrophic lateral sclerosis based on the approach of
augmentative and alternative communication (AAC). A meta-analysis on US-American studies
in conjunction with qualitative inquiries in a neurologic rehabilitation center in North RhineWestphalia.] Unpublished Diploma Thesis, University of Cologne-Germany. A good English
summary of one part of this study is: Wendt, O. (2003, March). Outcomes of low and high
technology AAC intervention strategies for ALS patients. Paper presented at the 18th Annual
International Conference on Technology and Persons with Disabilities, Los Angeles, CA. The
PowerPoint of the presentation may be found on the Purdue AAC website.
(http://www.edst.purdue.edu/aac)
*Woltosz, W. (1988). Stephen Hawking’s communication system. Communication Outlook, 10 (1), 8-13.
*Yorkston, K. M. (1989). Early intervention in amyotrophic lateral sclerosis: A case presentation.
Augmentative and Alternative Communication, 5(1), 67-70.
7. Other Instructional Resources
Educational Services, The Kornreich Technology Center (2002). AAC decision making for persons
with ALS, 2002 [webcast]. Available from the Kornreich Technology Center Web site,
http://www.ncds.org/rti/ktc/WebcastPage.asp?IDNumber=24
REFERENCES
1. AAC Texts with ALS Specific Content
Beukelman, D. R., & Mirenda, P. (1998). Augmentative and alternative communication: Management
of severe communication disorders in children and adults (2nd ed.). Baltimore: Paul H.
Brookes. (Specifically covers ALS on pp. 432-439)
Lloyd, L. L., Fuller, D. R., & Arvidson, H. H. (Eds.). (1997). Augmentative and alternative
communication: A handbook of principles and practices. Boston: Allyn & Bacon.
(Specifically cover ALS on pp. 14, 19, 170, 236, 355-356)
L.L.Lloyd, 2003, 2004, 2005
13
2. Other Books and Selected Chapters
Mathy, P., Yorkston, K. M., & Gutmann, M. L. (2000). AAC for individuals with Amyotrophic
Lateral Sclerosis. In D. R. Beukelman, K. M. Yorkston, & J. Reichle (Eds.). Augmentative and
alternative communication for adults with acquired neurologic disorders (pp. 183-231).
Baltimore: Paul H. Brookes.
Saunders, C., Walsh, T., & Smith, M. (1981). Hospice care in the motor neuron diseases. In C.
Saunders & J. Teller (Eds.), Hospice: The living idea. London: Edward Arnold.
Yorkston, K. M., Beukelman, D. R., Strand, E. A., & Bell, K. R (1999). Management of motor speech
disorders in children and adults (2nd ed.). Austin, TX: Pro-ed.
Yorkston, K. M., Miller, R. M., & Strand, E. A. (1995). Management of Speech and Swallowing in
Degenerative Diseases. Tucson, Arizona: Communication Skill Builders.
3. Articles
*Abrahams, S., Goldstein, L. H., Simmons, A., Brammer, M., Williams, S. C. R., Giampietro, V. &
Leigh, P. N. (2004). Word retrieval in amyotrophic lateral sclerosis: A functional magnetic
resonance imaging study. Brain, 127, 1507-1517.
Ball, L. J., Beukelman, D. R., & Pattee, G. (2002, April). AAC clinical decision making for persons
with ALS. Perspectives on Augmentative and Alternative Communication, 11, (1), 7-13.
Strong, M. J., Lomen-Hoerth, C., Caselli, R., Bigio, E. & Yang, W. (2003). Cognitive impairment,
frontotemporal dementia, and the motor neuron disease. Annals of Neurology, 54 (Supplement
5), S20-S23.
Yorkston, K. M. Beukelman, D. R. & Tice, R. (1996) Sentence Intelligibility Test (Version 1.0)
[Software]. Lincoln, NE: Communication Disorders Software.
Yorkston, K. M., Strand, E., Miller, R., Hillel, A., & Smith, K. (1993). Speech deterioration in
amyotrophic lateral sclerosis: Implications for the timing of intervention. Journal of Medical
Speech/Language Pathology, 1(1), 35-46.
4. Websites
Amyotrophic Lateral Sclerosis Association. (2004). Retrieved September 24, 2004, from
http://www.alsa.org
Golinker, L. A guide to AAC funding. Retrieved December 3, 2004, from
http://www.iltech.org/medicre-aac_guide.htm
------------------------------------*indicates case studies
**indicates theses
L.L.Lloyd, 2003, 2004, 2005
14
Currently, the highest level of research evidence on AAC interventions with PALS includes primarily
clinical case studies. These should be considered for clinical decision making relative to EBP. Quasiexperimental or experimental research is still needed in this area.
ACKNOWLEDGEMENTS
This module was mostly developed as part of the “ALS Speaks” project under the direction of Mary
Lyon with Iris Fishman and Pat Ourand serving as Task Force Co-Chairs. Many Task Force members,
and others, contributed to the development of the module. A special thanks to Laura Ball, Alisa
Brownlee, Lew Golinker, Rajinder Koul, Susan Langmore, Alisha Magilei, Judy Richman, Barry
Romich, Lisa Sandoval, Megan Wallace, Oliver Wendt, and Lisa Wood. The contents do not
necessarily represent the policy of ALSA and the endorsement of any of the contributors is not to be
assumed.
APPENDIX - A: Assumed Basic AAC Content
Augmentative and alternative communication (AAC): (1) The supplementation (augmentative) or
replacement (alternative) of natural speech and/or writing using aided and/or unaided symbols.
Blissymbols, electronically produced speech, pictographs, Sigsymbols, tangible symbols, and
traditional orthrography (TO) are examples of aided symbols. Manual signs, gestures, and
fingerspelling are examples of unaided symbols. The use of aided symbols requires a transmission
device, whereas the use of unaided symbols requires only the body. (2) The field or area of
clinical/educational practice to improve the communication skills of individuals with little or no
functional speech (Lloyd, Fuller et al., 1997).
I. CLINICAL/EDUCATIONAL BASICS
A. “Functional” and “Client Centered”
B. Evidence-based practice (EBP). Although many speech pathologists have demonstrated a
major concern about outcome measures for over a decade, EBP is relatively new to the
profession. An extensive discussion of efficacy and EBP including its development
originating in medicine based practice, definition of terms, and evaluating level of evidence
is provided by Schlosser (2003) in the first book applying EBP to AAC. The three
cornerstones of EBP are:
1. The best (or highest level) of applicable research
2. Clinical and/or educational expertise
3. Stakeholders perspectives
C. Ethical Issues
D. Transdisciplinary
L.L.Lloyd, 2003, 2004, 2005
15
II. GOALS OF AAC
A. Communication to meet daily needs: Participation at home, school, work, and other
environments.
B. More Specific goals.
1. Temporary means of communication
2. Long-term means of communication
3. Facilitation of spoken communication development
4. Facilitation of concept, language structure, and/or literacy development
5. Other communication, education and or intervention goals (e.g., replacing problem
behavior with more acceptable forms of communication)
III. SOME BASICS: AAC MODEL PLUS TERMINOLOGY AND TAXONOMIC ISSUES
A. Relationship between AT and AAC (Lloyd et al., 1997, p. 7, Figure 1.2)
B. Brief discussion of the clinical implications of simplified AAC model (Lloyd et al., 1997, p.
7, Figure 1.1) including the sender (e.g., the PALS), the receiver (e.g., the communication
partners), the environments, etc.
C. AAC Assessment Model (Lloyd et al., 1997, p. 170, Figure 11-1), based on the above AAC
Communication Model
D. The Participation Model of Assessment (Beukelman & Mirenda, 1998, p. 148, Figure 6.1)
E. N.B. Both of the above models stress the ongoing nature of assessment and the importance
of considering communication partners and environments
F. The four types of communicative competence (Light, 1989)
G. The four-level taxonomy of (1) Aided-Unaided, (2) Static-Dynamic, (3) Iconic-Opaque,
and (4) Set-System
H. Terminology. One of way to cover terminology would be to define the terms as they are
used.
IV. PRINCIPLES OF AAC ASSESSMENT AND INTERVENTION
A. Both texts (Beukelman & Mirenda, 1998; Lloyd et al., 1997).
B. AAC Principles synthesized from the above texts:
L.L.Lloyd, 2003, 2004, 2005
16
1. Everyone can and does communicate; therefore, build upon existing functional and
socially acceptable communication behaviors.
2. Keep the AAC user central and be consumer responsive.
3. There are no cognitive prerequisites for providing AAC services.
4. AAC should be responsive to both current and future needs as reflected in short-term
and long-term goals.
5. AAC assessment and intervention are ongoing and co-occurring so that they are
responsive to changes in the AAC user’s abilities and needs, communication partners,
and environments.
6. AAC involves collaboration of a team of individuals who have a shared agenda and
common goals.
7. AAC services should relate to typical and functional routines in natural settings and
environments.
8. AAC services should include procedures to provide accommodations and minimize
or eliminate communication barriers.
9. AAC services should build upon the strengths and abilities of AAC users, rather than
focus on weaknesses and impairments.
10. AAC services should focus not only on what specific skills should be assessed
and taught but also on how they should be assessed and taught.
11. Practice parsimony.
12. AAC services should include procedures to provide accommodations and minimize or
eliminate communication barriers.
13. Clinical and educational services should be evidence-based practice (EBP).
V.
SYMBOLS
VI.
TECHNOLOGY
VII.
AAC ASSESSMENT
VIII.
AAC INTERVENTION
L.L.Lloyd, 2003, 2004, 2005
17
REFERENCES for APPENDIX A
Beukelman, D. R., & Mirenda, P. (1998). Augmentative and alternative communication: Management
of severe communication disorders in children and adults (2nd ed.). Baltimore: Paul H.
Brookes. (Specifically covers ALS on pp. 432-439)
Light, J. (1988). Interaction involving individuals using augmentative and alternative communication
systems: State of the art and future directions. Augmentative and Alternative Communication,
4, 66-82.
Light, J. (1989). Toward a definition of communicative competence for individuals using augmentative
and alternative communication systems. Augmentative and Alternative Communication, 5, 137144.
Lloyd, L. L., Fuller, D. R., & Arvidson, H. H. (Eds.) (1997). Augmentative and alternative
communication: A handbook of principles and practices. Boston: Allyn & Bacon. (Specifically
covers ALS on pp. 14, 19, 170, 236, 355-356)
Schlosser, R. W. (2003). The efficacy of augmentative and alternative communication: Toward
evidence-based practice. San Diego, CA: Academic Press.
L.L.Lloyd, 2003, 2004, 2005
18