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Presenter(s)
Oliver Wendt
Purdue AAC Program
100 N. University St.
West Lafayette, IN
47907-2098
Lyle L. Lloyd
Purdue AAC Program
100 N. University St.
West Lafayette, IN
47907-2098
Iris Fishman
AAC Consultant
15 W. 72nd St.
New York, NY
10023-3402
RATIONALE
This presentation focuses on a teaching module for Augmentative and Alternative Communication (AAC) intervention related to patients with Amyotrophic Lateral Sclerosis (ALS). The module was created for students enrolled in Speech-Language Pathology univeristy training programs. It was originally developed as part of a national task force sponsored by the ALS Association (ALSA) whose members consist of professionals working with the ALS population in clinics, universities and ALSA sponsored chapters as well as manufactureres of communication devices. Because communication modalities must be included in graduate speech pathology curriculums in the United States, it is anticipated that more AAC courses will be offered, but that faculty instructors may not have the expertise to present information on its application with this particular population. This module is designed to cover the most important aspects of ALS in one or two lectures in an AAC course. It may also be of some benefit to instructors of motor speech disorders courses when they cover ALS. The module provides learner outcomes, an outline with some elaboration of the topics that are specific to ALS (e.g., disease stages, assessment emphasis), and instructional resources to help design additional course content.
LEARNER OUTCOMES
*Understand the nature and progression of ALS
• Understand ALS issues in AAC assessment and intervention
• Understand the impact of upper and lower motor neuron impairments
• Identify spastic, flaccid, and mixed spastic-flaccid dysarthria
• Select appropriate motor speech assessment procedures
• Determine appropriate timing of AAC intervention
• Identify funding resources for AAC services and devices
• Understand roles of interdisciplinary team members
• Understand psycho-social issues that influence AAC acceptance and use
TOPIC OUTLINE
1. Need to Educate Others
a. Referrals occur not at all or not until the final stage of the disease.
b. 75-80% of patients with ALS (PALS) experience speech disorders so severe that they require AAC at some point in their lives (Saunders, Walsh, & Smith, 1981).
c. AAC has shown to be a successful way to communicate for persons with severe speech disorders due to ALS.
2. Overview of ALS
a. Wide range of onset (between 30 to 60 years) with the mean onset in the 50s.
b. Incidence is about 1 to 2 cases per 100,000 (Ross, 1997).
c. Relatively rapid progression, but may plateau for periods of time with approximately 60% surviving less than five years.
d. Bulbar (brainstem or upper motor neurons), spinal cord (lower motor neurons) and mixed (bulbar & spinal cord) are ways to categorize the types of ALS relative to AAC selection and time.
e. Typically, language is intact.
f. There is a continuum of cognitive dysfunction in ALS, ranging from mild cognitive impairmment to a more fulminant progressive dementia of the frontotemporal type (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).
3. Speech Stage Related Information (according to Yorkston et al., 1999) Due to the progressive nature of the disease, changes in speech can be divided into five stages.
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.
b. Stage 2. Detectable Speech Disturbance: Speech remains easily understood, but changes are noted by others, especially during fatigue or stress.
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.
d. Stage 4. Use of AAC: Intelligibility problems need to be resolved by writing or a spokesperson. The speaker may initiate communication nonvocally.
e. Stage 5. Loss of Useful Speech (continued use of AAC): Speakers may not use vocal inflection to express emotion, affirmation, or negation.
4. Assessment Issues Assessment occurs on an ongoing basis along five stages of disease.
a. Stage 1. Normal Speech Processes: Listen to patient's speech to evaluate for any changes; explain or ask patient about changes that have been noticed; discuss factors which may impact speech (e.g., fatigue, time of day, exercise).
b. Stage 2. Detectable Speech Disturbance: Listen to speech and examine speech muscles for changes that might include: slowness, low volume of speech, slurring, harsh sounding voice quality and increase in nasal sounds.
c. Stage 3. Reduction in Speech Intelligibility: ALS team will initiate a formal AAC assessment.
d. Stage 4. Use of AAC: ALS team will identify a communication system that best meets patients needs.
e. Stage 5. No Functional Speech: Patient and ALS team will continue to assess changing communication needs.
5. AAC Intervenion using Speech Stages Patient's clinical path for communication changes with progression of ALS. AAC intervention follows five different stages.
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 of 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: 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. General Intervention Issues General intervention issues to consider when providing AAC intervention to PALS include the following:
a. Family/caregiver/client issues (e.g., acceptance, willingness to pursue technology, grief, etc.)
b. Different types of AAC strategies and technology (speech generating device (SGD) & writing devices) are required to provide appropriate AAC services to PALS.
c. The timing of ALS assessment and intervention is critical for appropriate clinical practice and speaking rate and intelligibility are the best predictor of the timing of speech deterioration in ALS.
d. Plan for the device to accommodate the progression of the disease.
e. Discuss alternate access modes and future technology (e.g., eye gaze control, brain wave - EEG & interfaces).
f. Benefits of "effort saving" technology (e.g., word prediction, etc.).
g. Employment and AAC
h. Loan library models
7. Funding Issues (according to ALSA, 2004; Golinker, 2001)
• Most medical insurance covers SGDs as either prosthetic devices or durable medical equipment.INSTRUCTIONAL RESOURCES*
a. Websites
1. http://www.aac-rerc.com/
2. http://www.alsa.org
3. http://www.kornreich.org
4. http://www.cini.org/
b. 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)
REFERENCES*
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.
ALS Association, 2004. Augmentative and alternative communication: An overview of high technology solutions for ALS patients and caregivers. Retrieved September 24, 2004, from http://www.alsa-or.org/adaptive/AAC#top
Golinker, L. 2001. A guide to funding communication devices through Medicare. Retrieved September 24, 2004, from http://www.iltech.org/medicre-aac_guide.htm
Ross, M. A. (1997). Acquired motor neuron disorders. Neurologic Clinics, 15, 481-500.
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.
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., Strand, E. A., Bell, K. R. (1999). Management of motor speech disorders in children and adults. Texas: Pro-ed.
*Additional instructional resources and references will be provided during the presentation.
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