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Week 11: Individuals with ALS and Other Acquired Physical Conditions (Ch. 14)
Terms in this set (44)
Key Issues for Adults
•Communication style, environments and partners
•Comfort with technology
Support for use of AAC by communication partners
•Ability- can they use it alone? if they don't have support?
Acceptance of disability and AAC
-varied skills, literacy
-don't want assumptions to taint your recommendations
-treat the person, not the diagnosis
-don't just assume eye gaze because ALS
Amyotrophic Lateral Sclerosis
•Progressive, degenerative disease of unknown etiology involving the motor neurons of the brain and spinal cord.
-don't know what causes
-effects voluntary movement, sensation not effected
-diagnosis of exclusion
Two main types:
•Bulbar: early on might need AAC (speech affected), but walking around
•Spinal: arms, torso, legs affected first
•80-95% unable to speak by the time of death (Saunders, Walsh, & Smith, 1981).
•Mean onset is 56 years of age
•Median survival rates are 32 months form onset of symptoms and 19 months from diagnosis (Yorkston, et al 2012)
-survival rate: 2-5 years
-twitch up to dysarthria
ALS Communication Symptoms
•Dysarthria (mixed flaccid- spastic type) Video example
•25-35% experience subtle changes in cognitive function (Yorkston, et al 2012)
-emotional rollercoaster type things
-executive functioning, planning, etc.
ALS AAC Model (Ball, Beukelman, Bardach 2007)
Early Phase (Monitor, Prepare and Support)
•Initial diagnosis through referral to AAC assessment
•Monitor speech for changes and educate about possible changes
-reduction in rate of speech before intelligibility impacted
-speech gets slower as well as decreased intelligibility
Middle Phase (Assess Recommend, and Implement)
•Referral for AAC assessment until AAC strategies are selected, purchased and initial instruction is completed
•Identify participation patterns and communication needs
•Assess current and anticipated capabilities—physical, cognitive, language, vision and hearing
-loner programs, devices
-language, cognition, education, how comfortable are they, technology, priorities, difficult conversations
Late Phase (Adapt and Accommodate)
•Time after initial AAC intervention until individual's death
•Modifications in AAC strategies are needed to deal with changes in communication needs and capabilities.
-might use touch initially, practicing eye gaze, then will rely on eye gaze
-having less buttons and icons, etc.
Unique AAC Concerns for ALS
Changing motor needs
•Bulbar (brainstem) ALS may initially be able to control AAC using their hands/fingers however will progress to needing head or eye tracking access
•Spinal ALS—may initially need writing system support before actual spoken communication support. Will most likely be using head or eye tracking for access
•Needs may change based on positioning (e.g. in wheelchair, recliner, bed).
− May need two access methods
•Individuals can store recorded messages to later program on buttons in their AAC system
-anticipation when you want to say those things
-phrases you often say
-personality and emotion
•Individual records their voice to later create a personalized synthetic voice.
-components of voice are saved and recombined in different ways
-endless and flexible
-but less in unique pitch and tone
-combined with other donated voices
Voice and Message Banking
-Boston Children's has led the charge
John Costello/Boston Children's
-her dog still responses to the voice
Tools for calling
-to make a phone call
-using an SGD and alexa voice calling
-synthetic vs. natural speech
-many devices have alexa and google home that will now be activated internally "call Catherine"
Steve's Story Computer Control
-computer control and technology increasingly important
-working with computer technicians
-technology can allow them to access different parts of communication besides verbal speech
Multiple Sclerosis (MS)
•Most common neurological condition of young and middle- aged adults
•Inflammatory, demylenating disease of the central nervous system (Yorkson et al 2012)
•Varies from person to person
-diagnosed after period of episodes
-varies day to day, year to year
-communication support not always necessary
MS Communication Symptoms
•Dysarthria is the most common symptom
•A relatively small number of people with MS need AAC systems
If AAC is needed:
•More than half of people with MS demonstrate cognitive impairment
•Vision limitations are common so may require auditory scanning and/or auditory feedback
•Motor skills vary person to person
•Intention tremor in the upper limbs may require keyguards or alternative methods of access such as switch access
-different for everyone
-benefit from AAC to use periodically as necessary depending on who she is speaking with
Guillain-Barre Syndrome (GBS)
•Progressive destruction and subsequent regeneration of myelin sheath of peripheral nerve axons
•Paralysis progresses from lower extremities upward and maximum paralysis occurs within 1-3 weeks after onset.
•Nerve function and associate muscle strength then gradually return
-Typically starting with head and face progressing inferiorily
•80-85% of people recover completely with no residual impairments
-may be connected to Lymes disease
-after an infection
-look at person, not diagnosis
GBS Communication Symptoms
•Flaccid dysarthria or anarthria (complete loss of speech)
•May be on a ventilator
-Require low tech AAC boards or device to use while in ICU/hospital
•Language and cognition not effected
AAC Stages (benefit from this planning)
•Early Phase (Deterioration Phase, Loss of Speech)
•Middle Phase (Prolonged Speechlessness, Spontaneous Recovery of Speech)
•Late Phase (Long-Term Residual Motor Speech Disorder)
•Syndrome composed of a cluster of motor symptoms that include tremor at rest, rigidity, paucity and impaired postural reflexes.
•Resting tremor is usually the first symptom prompting people to visit the doctor
•Managed with medications and/or surgical interventions (deep brain stimulation)
•Side effects of medications can interfere with the use of AAC approaches
PD Communication Symptoms
Dysarthria is common
•Reduced pitch variability and reduced loudness
-phonation and lung strength
•Voice quality is harsh and breathy
•Rate of speech is variable
-Lee Silverman Voice Treatment
-significant AAC strategies
PD AAC Considerations
•Many people diagnosed are older adults and most are retired
-Hearing limitations of listeners may be a barrier to effective communication
•Range of physical impairments varies from person to person
•Can often read and spell at normal levels (not a cognitive component at first)
•Controversy on whether or not dementia occurs
•May need to consider several potential motor control problems
-Reduced range and speed of movement so may need to reduce size of display
-May need a keyguard to dampen tremors (more stability)
•Brainstem contains nuclei of all cranial nerves that activate the muscles of face, mouth and larynx-damage to this area of the brain may result in an inability or reduced ability to control these muscles voluntarily or reflexively
-locked-in syndrome often
-establish functional yes or no response
Brainstem Stroke Communication Impairments
•Vary with the level and extent of damage to the brainstem
•Nearly everyone requires AAC support at least initially
−Develop functional yes/no response
−Access call system
−Fatigue often an issue
−Eye gaze or partner assisted scanning
−Formal AAC assessment
−Cognition and language intact
−Visual functioning may or may not be impaired
−Optimize AAC in terms of mounting, access, messages
−Develop operational competence with technology
-control over the device
Partner Assisted Scanning
you work along with patient/client to put out a message
-letter by letter, different buttons, etc.
-presents options based on yes/no response from the user
-useful when direct selection is not an option
-reliable yes/no response
-continue until they respond to a yes
Partner Assisted Scanning with Text
-can also do with a keyboard
-scan through each row, then scan across row
Discuss one thing you learned today.
Activity: Partner Assisted Scanning
Dr. Susan Fager: Expert Series on ALS
Breakout Group Activity for Final Exam Prep
•Groups of 2
•Discuss your assigned question
•Share out with the class when we come back together
1.What are some of the key considerations for ensuring an AAC evaluation is reliable and valid? Additional considerations when assessing people from different cultural and linguistic backgrounds?
-team is knowledgeable
-individual can actively participate
-literacy, sensory, motor, cognitive processing
Cultural and linguistic backgrounds
1. The team conducting the assessment must be skilled and knowledgeable in AAC.
2. The individual with complex communication needs must be able to participate in the assessment.
3. The AAC team must ensure that the assessment is meaningful based on the individual's life experiences.
4. The assessment must be appropriate given the individual's cultural and linguistic background.
5. The sample of behavior must be sufficient to determine the individual's strengths and challenges.
6. The AAC team must adhere to the principle that "The present is observable; the future is unknown."
•The assessment must consider cultural and linguistic factors.
-if a family is bilingual, consider that
1.Describe at least 5 interaction strategies that might be used by communication partners to support the communication of individuals who rely on AAC
-Aided Language Stimulation
-Positive communication environment
-Modifying grid size
1.What is the difference between grid displays and visual scene displays? What are the advantages and disadvantages of each?
-add all vocabulary
-might not include actual images
-supports morphological development
-not everything in the picture
-talk about things in picture
1.What is prediction and how is it used?
-assists with alphabet formation of words
-word prediction/letter prediction/predict based on context and parts of speech
-algorithm of some sort in an application
-vocabulary selection for literate individuals
-Reduce the number of selections required to create a message.
-Can support spelling for those who are learning literacy skills.
-Provide grammatical support.
-Rate enhancement for those using alternative access methods (e.g., scanning).
2.Describe three key considerations in delivering AAC services to people with intellectual and developmental disabilities
1. early intervention
-we will just "wait"
-who is going to support the individual?
6.What are some potential goals for early emergent communicators who are at the early stage of symbolic development?
-interaction is taking place, you do something
-educational philosophy for early emergent communicators
-you are teaching someone the transmit of a message
Goals: Labeling, interaction
-modeling and showing cause and effect
-visual scene displays with hotspots
6.How might you teach beginning communicators to combine symbols to communicate more complex requests, comments or questions?
-Aided Language Stimulation (modeling)
-adding adjectives, words, etc.
-kids can become prompt dependent
-motor pattern that appears frequently = they may not discriminate against blue and car anymore
6.What are visual schedules and how are they used?
Visual supports use pictures or other visual items to establish expectations, communicate what is going to happen next, and support transition between activities and events.
6.What is communicative competence? Individuals who require AAC need to develop knowledge, judgement and skills in four interrelated domains to build communicative competence. What are those domains?
Functionality and adequacy of communication and knowledge, judgement, and skills in four domains
1. Linguistic: language skills, vocabulary
2. Operational: device on and off, navigating pages
3. Social: interacting with others
4. Strategic: repairing and avoiding breakdowns in communication
-Goals grid: separates out ability levels with skills for goals
6.What are 5 key participation domains for all individuals, including people with complex communication needs? For one of these domains, describe a challenge that is commonly experienced by people with CCN and suggest adaptations and interventions that would help to address the challenges.
2. employment and volunteer activities
3. assisted and independent living
5. community participation
6.How do the goals of Early Phase, Middle Phase, and Late Phase AAC Intervention for ALS differ?
1. Early: Educate
2. Middle Phase:
-potential voice banking/message banking
-assessing current abilities
-recommending and implementing a system
3. Late Phase:
-modifying access method and AAC
6.Describe at least two types of interviewing activities that you might use to identify the communication needs and changes in participation patterns of an individual with severe aphasia.
1. Interview questions with written choice
2. Number scale, how hard is it for you to participate?
-very patient driven
-priorities of individual is driving your therapy
13.If you were responsible for the selection of yes/no eye signals to be used in a medical setting, what signals would you propose, and why? Would you insist that all staff use the same yes/no eye signals or allow each staff member to select the signal that he or she prefers? Why?
-yes: looking up
-no: closing eyes
-necessary to implement across staff, consistent, comfortable, confusing to be the person using a different system
13.Your neighbor has been diagnosed with Parkinson's Disease. He asks fi he will need "one of those talking machines." what do you tell him?
-to help support your communication competence
13.A woman has been diagnosed with spinal rather than bulbar (brainstem) ALS. How is that diagnosis likely to impact her walking, eating and speaking? What are the implications for intervention?
-everybody is totally different
-spinal: physical mobility impacted before speech
-more time with voice banking/message banking
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