Chapter 14 Adults with Acquired Physical

ConditionsIts all about communication

Contexts in which AAC has Evolved

Context: More People with AAC Needs & AccessO Larger overall population

O Longer life expectancy for overall populationO Longer life expectancy for those with

developmental disabilitiesO Larger number of Children with disabilityO Larger population of people living with intubation

(and other temporary or permanent medical conditions)O Changing international access to technology with AAC

potentialAAC-RERC Partners: SOSC Report 2012

The people: General Population Trends

O Increased lifespan– burgeoning older populationO People who live to 65 years of age are

expected to live 18.6 more yearsO (Women- 20 years; Men- 17.3 years)O (over 65 years: 2000– 12.9% of U.S.; 2030—

19.0%)O Life expectancy for people who live to 85

years is 6.8 more years for women and 5.7 more years for men.

Administration on Aging-based on US Census

Context: Technology Shapes Ability and Disability

O New technologies can either mitigate or exacerbate disability

Context: Rapid Technical Change

O Rapid technical change tends to emphasize universal design

O However, rate of change impacts the functionality of technology:O ElderlyO Those who require facilitator supportO Those with highly unique technical

requirements

Technological Changes: AAC

O Mobile technologyO Creating communication spaces with shared

technological accessO Dynamic information gathering sharing to

support AACO New access strategies:

O Eye-head tracking in universal designO Integrating eye tracking and physical accessO Supported speech recognition of disordered

speech signalsO Brain computer interfaces that incorporated AAC

strategies

Context: Use of Technology to Develop Capability

O Physical accessO Visual access and organization of

informationO Language and cognitive capabilityO Strategies

O GamingO Incremental increase in complexityO Sharing “space” with partners

Context: Service Delivery/Policy Changes

O Mobile technology influencesO Change in support from commercial

providers of AAC appsO Declining rural populationsO Reimbursement per diem capsO Instructional support networksO Distance instruction and practice

support

Need AAC Services (2 Examples)

Amyotrophic Lateral SclerosisO 5,600 diagnosed with ALS annually,

300,000 prevalenceO 80-90% people with ALS unable to speak

at time of deathO Median survival rates are 32 months from

onset and 19 months from diagnosisO Nebraska database 93% required AAC at

or before time of death(Ball, Beukelman, Pattee, 2004)

Amyotrophic Lateral Sclerosis

O Bulbar SignsO Resulting from brain stem

involvementO Spinal signs

O Resulting from spinal cord involvement

O Mixed signsO Resulting from brain stem and spinal

cord involvement

Symptoms and Natural Course Progressive Disease

O An ALS progresses, upper and lower motor neurons are involved

O Mean age of onset– 56 yearsO Male to female ratio—2:1O Bulbar ALS– women demonstrate more severe

symptoms than menO Spinal ALS—men demonstrate more severe speech

symptoms than womenO Language usually intactO Cognitive– 10% fronto-temporal dementia (more on

tests)O No important means of drug intervention

SurvivalO 14 to 39% survive 5 yearsO 10% survive 10 yearsO A few survive 20 yearsO Those with primary bulbar symptoms

survive a median of 2.2 yearsO Death is usually from respiratory failure

due to infectionO Life is extended by invasive ventilation O Quality of life is improved with alternative

nutrition

Communication Characteristics

O Gradual progression (speech symptoms)

O Dysarthria of mixed flaccid and spastic types (because of upper and lower neuron involvement)O Spastic dysarthria (upper)O Flaccid dysarthria (lower)

O Most cannot speak for some time prior to death

Routine Intervention StrategyIntervention Phase 1: Monitor, Prepare, and

SupportO Monitor performanceO Make timely referralIntervention:O Confirm normalcyO Answer questionsO Identify service providersO Identify attitude patterns toward

communication impairments & technologyO Share speech monitoring results with

caregivers and other decision makers(Ball, Beukelman, & Bardach, 2007)

Monitoring Speech Performance

O AAC interventions are difficult when person cannot speak

O Speech intelligibility is a poor predictor, because deterioration of speech can be very rapid

O Once speaking rate is 60% of normal, move toward AAC system (120-125 WPM)

One person’s experience

O Sept: 97% intelligible, rate 90 WPM

O Nov: 75% intelligible, rate 68 WPM

O Feb: 33% intelligible, rate 52 WPM

O May: 6.8% intelligible, rate 36 WPM

Late AAC Assessment Project

OPurposes:1. To identify persons with

amyotrophic lateral sclerosis (ALS) for whom the AAC assessment was delayed

2. To document the factors that result in a late AAC assessment

(Nordness, Ball, Fager, Beukelman, & Pattee, 2010)

ParticipantsO 28 of 280 people with ALS were

identified as receiving a late referral (10%)

DemographicsGender Male= 11 (41%)

Female= 16 (59%)Onset type Bulbar = 16 (59%)

Spinal = 9 (33%)Mixed = 2 (7%)

Age at onset Mean = 59.87 yearsRange = 41-79 years

Reason for Late AAC Assessment

10%

5%

10%

15%

20%

25%

30%

35%

General practitionerNon-Clinic NeurologistClinic NeurologistSNF/Group homeOther Health ImpairmentFamily IssuesTravelLanguage BarrierUnaware of ServicesPersonal Acceptance

Intervention Phase II: Assess, Recommend, & Implement

AAC AcceptanceOInitial acceptance– person with

ALS completed an AAC assessment, decided to obtain AAC technology and used AAC technology

ODelayed Acceptance– person with ALS initially rejected AAC

OReject– never accept

ALS: AAC Acceptance and UseNebraska ALS Database (N=40)

O 95% unable to speak prior to deathO 96% accept AAC (6% delay; 4% reject)O All, who accept, use until within a month or

two of deathO Length of use is remarkably similar for

those with initial spinal (23 months) or bulbar symptoms (26 months) (these may be under-estimates because 15% continued to use while ventilated)

Ball, Anderson, Bilyeu, Pattee, Beukelman, & Robertson (2007)

Reasons for RejectionOCognitive limitations of persons with ALS

OMultiple health conditions: Cancer & ALS

AAC Acceptance by Gender

O AAC Acceptance Gender Differences

Male Female0

5

10

15

20

25

30

35

AcceptDelay AcceptReject

Reasons for Delayed Acceptance

1. Resistance of Family Member

2. Resistance of physician3. Initial resistance of

person with ALS

Intervention Phase III: Adapt and Accommodate

AAC Technology Facilitators

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102030

Comparison of Faciliation Involvement

Comparison of Faciliation In-volvement

Ball, Schardt, Kim, & Buekelman, 2005)

Eye tracking Follow Up

O 15 persons with ALSO 14 Continued to use eye tracking

technologyO 1 discontinued (eye lid droop

interfered)Ball, Fager, Nordness, Kersch, Pattee, and Buekelman, 2010

Reasons for Eye Tracking

O58% Eye gaze access onlyO27% Multiple access

preferredO13% Unable to scanO7% wanted eye and head

access

Communicative Uses

Face

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Email Web

other

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20406080

100

Percent of participants

Percent of participants

Patterns of AAC Use (Routine Practice)

O Survey of family members and caregivers in 8 states (215 respondents—44.7%)O 79% reported difficulty with communicating

with others ( 65% with family member or caregiver)

O 45% reported having an AAC deviceO Communication Topic

O Personal needs– 73.3%O Caregiving Issues– 43.1%O Family Issues– 39.8 %O Comments about day– 33.1%O Pain—32%

Brainstem ImpairmentOEtiology

O Brainstem stroke (basilar artery occlusion)

O Traumatic brain injuryO Brainstem tumorO DemylinationO West Nile/ Guillain Barre syndrome

Clinical profiles1. Complete locked in

syndrome2. Incomplete LIS3. Transitioning from complete

LIS to incomplete LIS4. Top of Basilar Syndrome

Complete LISO Early stages of recovery from

brainstem impairmentO Quadriplegia with intact or near-in

tact language/cognitionO Vertical eye movementsO Small number of individuals remain

chronically locked-in

Incomplete LISOSevere physical impairments,

but not "locked in“OMay have ability to move ahead

or other body parts (control and stamina for these activities remain limited)

OHave more I control Or normalize control compared to complete LIS

Complete to incomplete LIS

OGradual gain of physical movement control over time

ORecovery possible, but severe dysarthria, common in those who do regain some ability to speak

Top Of the Basilar Syndrome

OLIS with impaired attention and arousal

OChallenging characteristics for effective AAC intervention

Early/Acute Intervention

OMedical instabilityO Intervention needs to be flexible

and occur secondary to medical care needs

O Adjustments and intervention schedules (shorter but more frequent sessions)

O Education of care providers extensive component to early intervention

Establish Consistent Response Mode

O Reliable yes/no response modeO Motor assessment