Interventions for Individuals with Severe-Profound Brain Injuries

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&RPPXQLFDWLRQ Interventions for Individuals with Severe-Profound S P f d Brain B i Injuries K th Kathryn Garrett G tt


Alternative Communication

Susan Fager

Therapies, LLC, Pittsburgh,

Asst. Director,


Communication Center,

Renee Heldman Karantounis

Adjunct Professor, University

Institute for Rehabilitation

AAC Specialists, LLC

of Buffalo

Science & Engineering,

Greenwood Village, Colorado

Madonna Rehabilitation Hospital,

2-hourLincoln, seminar NE at ASHA 2010 Philadelphia, PA

Topics of this Presentation Who are we talking about? What are the problems? A “Stages/Categories” model of intervention Case examples Summary/Future needs

Etiologies Trauma Closed head Open (skull) Penetrating

Anoxia Cardiac events Drug overdoses Near drowning g Electrocution Fires Metabolic disorders

Vascular Hemorrhagic

Incidence of severe brain injuries 1.5 million brain injuries annually

Approximately 40% are severe Number of acute and long term survivors of severe brain injuries are unknown

Prevalence (current population) is unknown Who has seen these individuals… Acutely? In rehab? In long term care facilities? At home?

Defining the relevant groups Comatose Persistent Vegetative State (PVS)

Near Coma/Minimally conscious State (MCS) Slow to recover Locked in Technically refers to pontine stroke, not TBI

___________________ (missing term) Point – crossover and ambiguity in terminology that affects expectations, funding, and clinical pathways

Are these individuala assessed and identified with sensitive (sure-fire) tools?

The short answer -- NO

Estimated that 40% are still misdiagnosed Neurologists may not be providing interfaces for communication when assessing severe brain injury (e.g., Glasgow Coma Scale)-error in environment, evaluators, patient and tools/interpretation But we (SLPs with creative interventions and modest AAC toolkits and strategies) can help identify these individuals

Who are these scales NOT valid for?

What are the pertinent issues for therapy? Which brain injury patients have internal competence with minimal ability to demonstrate it because of motor challenges?

Can severe brain injury patients (with severe impairment of consciousness) change cognitively as a result of active engagement in therapy activities? Are all individuals identified as deserving candidates for rehab services (adapted for patients with severe motor deficits) ? Should they receive deferred services?

Case Example: Bill

Introduce New way of thinking -- active interventions for individuals with severe brain injuries at various stages of recovery Go beyond motor and speech responses

Interventions are communicative and contextual

Availability of a finely tuned therapy hierarchy/menu of treatment options that crosses therapeutic domains Motor speech Cognition Swallowing Adaptive access and AAC Vision

Use of Contextual Communication Activities (Ylvisaker) Periodic Reevaluation

Continued case management

Stages of Intervention Stimulation Level – low level Structured Level – mid level Compensation Level – high level

Conceptual Model of AAC for Brain Injury (Garrett 2003 + Fager et al (Garrett, al., 2007))

• A LINK (Stimulation(Stimulation-Level Intervention)

• A WINDOW (Structured(Structured-Level Intervention) • A TOOL (Compensation(Compensation-Level

I. Stimulation Phase

AAC during the STIMULATION Phase of Recovery AAC = a LINK to emerging awareness and responsiveness Patient Characteristics

Coma (Rancho 1-3) Patient moves from no response to generalized behavior, then localized, then inconsistent but purposeful. Poor selected attention, but may focus occasionally on presented stimuli

Assess (via observation and trials): response mode

attention awareness motivating stimuli motor ability

Goals of Stimulation Level Intervention (LINK) Shape unintentional communicative signals to become intentional/voluntary to express: pleasure/displeasure, agreement/confirmation, refusal, reference To continue a preferred environmental stimulus To discontinue a non-preferred environmental stimulus

Activities – “Link” Level 1) AAC-Switch Based Activity Hierarchy (Garrett, Schuetz-Muehling, Riggs unpublished)

Hierarchy y of Switch Activities a) Simple On-Off Locate best motor control site Set up the context (“hot ( hot in here here, you are sweating…”) Place switch for accidental activation (e.g., direct contact) When switch is activated, make sure stimulus (e.g., f ) is i perceived i d fan) Provide verbal consequenting (label what happened) “Oh, you turned on the fan! Great…that feels so much cooler”

Provide opportunity for second accidental occurrence within 1 minute – conseuqent, etc. rd activation - move switch slightly out of range  Wait for `searching/movement toward prior location

Hierarchy of Switch ctivities A Examples of simple on/off switch activities in acute care contexts:

Fan – “too hot in here” Music – “let’s listen to some good tunes” *Reminiscing tapes from family members (Trigger remote episodic LTM) Shaving with electric razor – rub face “Oh you’re turning into Grizzly Adams” Hair dryer – “Hair styles” Popcorn/air popper - auditory and olfactory stimulation Electric tea kettle Light bright toy, lava lamp, electric ‘aquarium’, disco ball (“brighten up the room”

Adapted tape recorder setup Remote input

Sub-mini phone adapter

Switch cord

NOTE – no easy way to setup digital electronics for switch activation Need old-fashioned, on/off radios and tape recorders Can’t use any item that has a remote control, or digital touch pad/button technology


Simple appliance control setup

Electronic Aquarium

Ablenet Link unit is “hiding” hiding behind plexiglass barrier (below, on shelf) to avoid damage during agitation

b) On/off Switch-controlled Appliance activation with Timer Delay - REACTIVATION Use LATCH function on Ablenet Unit Use and external Timer Latch between switch and device Set a brief time interval for the device to stay on after activation (e.g., 5 seconds) WAIT WAIT WAIT for reactivation 10 seconds – verbal contextual cue (Oh, it’s so quiet in here. The music stopped). WAIT 5 more seconds Tactile prompt Physical prompt (HOH) if necessary to re-alert patient to next opportunity

Latch Mode

C) Choice-making within switch activation activity Choose which reminiscing tape to listen to by selecting personal photo Ch Choose album lb cover ffor music i Hair styles before using hair dryer Wa s to make choices can include incl de Ways Eye gaze to photos Direct selection

May not be truly cognizant choice making at first Interpret accidental moves, reaches, gaze as intentional

Music Choice Board Single Message recordable device (Big M k Si Mack, Simple l Talker) T lk ) Music choices activity Representative photo/graphic symbol p g p y Partner can play a sample first before “sample” offering choice

Video Illustration – Matthew Audience questions: Describe the PACE of this activity What behaviors are indicators of his cognitive ability? Is his choice making volitional? Is his switch activation volitional? Keep in mind – still rated as a 2 on the Ranchos scale by rest of team. Is this still valid?

Serial Message Activation within Brief ‘Conversation’ Similar to reactivation of appliances However now use pre However, pre-recorded, recorded consecutive conversational messages within a predictable sequence Tape Recorders Step-by-Step Communicators (AbleNet, Inc.) Simple digitized voice output devices set to step scanning with audio cues Powerpoint with recorded narration – controlled with external switch adapter (Don Johnston, etc.)

Patient Goal – Reactivate recording device to play correct message at an appropriate conversational pause

Cueing Hierarchy Sets of 3 trials (when able) C i Hi Cueing Hierarchy h : (CLINICIAN DEMO)

a) expectant pause b) verbal suggestion c) physical prompt

Serial phrases device Step by Step communicator (Big Mack)

Another technique to Shape I Involuntary>Voluntary l V l Responses R 2) Communicative Sensory Stimulation Protocol (Garrett Schuetz-Muehling, (Garrett, Schuetz-Muehling 1991 unpublished)

Set context -- “Oh, mmmm. I smell cookies baking…mmm…there’s that vanilla smell…just like in mom’s kitchen… P t stimulus ti l (vanilla ( ill under d nose, llemon peel, l Present books falling, door slamming, burst of music/dogs g, cool washcloth,, lotion,, being g rubbed into barking, skin) Respond contingently to sensory stim reactions (e.g., chewing) as if meaningful( “Oh, that really smells good to you, too. I can tell, you’re smacking your lips!)

After 3rd trial in which a response is successfully elicited, WAIT. Now attempt to elicit a peremptory response, “initiated” byy the patient, p , WITHOUT presenting p g the stimulus first Interpret (e.g., chewing) as a rudimentary request “Oh, you want to smell some more…well, sure!” Give desired sensory input again, verbally interpret b f Shift ffrom STIMULUS tto REQUESTED as before. ITEM.

In this approach, you don’t administer a set number of stimuli – yyour behavior is predicated p on the patient’s responses

Treat “no response” p as meaningful, too Respond contingently if there is NO response – “Oh, “Oh you d don’t ’t lik like th that” t” . Try 1 more time. If no response after trials 2-3, DISCONTINUE the individual does not perceive stimulus at sensory threshold OR as meaningful

See Worksheets 5.1 from Fager et. al. Chapter CD (Beuk, Garrett, Yorkston, 2007) – Shaping Responses

More Goals g g Choice-making g 3)) Teach Beginning (preferences) Eye y Gaze Reach Movement toward preference Increased chewing/munching Quieting

Favorite visual stimuli: hairdos (magazine pics), photos of pets or family members; CD covers; girls in bikinis vs. Queen Elizabeth photo; outfits from Fashion magazine Plain backgrounds – provide high contrast

Favorite auditory stimuli: family voices,

American Idol performances; comedians; musical selections

Yes/No Signals 4) Begin to establish a yes-no p response Use most transparent response mode (Fager,et al.) Not just the absence of ‘yes’ signal Example – Bob’s “yes” signal + new “no” signal

Questions that that… tap biographic, biographic remote memory for preferences (vs. declarative memory) E.g., “Do Do you like to dress up, yes…or no?” no? Not – “Are you 35 years old?”

A ffun, motivating Are ti ti “Do girls like you, yes…or no?”

Or focus on immediate choices “Do you want a lemon swab?”

Example: M s signals M’s M’s response pattern

Confused or apraxic patients may benefit from a partner YES/NO TAG to questions (Garrett & Beukelman, 1992; Garrett &

Lasker, 2005)

Example 1: “Jed, “Jed do you like to watch STAR TREK…YES [make your voice rise and nod your or NO [make your voice go head] [now pause] pause]…or down and shake your head]?” Example 2: “Do you want to sit up a bit higher… YES [raise [ i voice/nod]…or i / d] NO [lower [l voice/shake i / h k head]?


ll i Si l C d within ithi 5) ffollowing Simple Commands highly motivating, contextual routines (Within person’s physical capabilities) Examples: Take off hat Lick lollipop Open gift (wrapped loosely) or envelope Turn p page g ((cardboard reinforced)) of favorite mag Take a card (High Card Turn-taking) Shake my hand Turn out the light

Patients who do not evolve beyond stimulation stage Because of profound brain injury Diffuse axonal injury Hemispherectomies/significant tissue loss Severe hypoxia Global cortical injuries

don’tt develop voluntary responses for switchWho don switch based activities, follow commands, or develop yes/no May need a completely partner dependent communication system SIGNAL DICTIONARY

For patients with severe motor or cognitive limitations -- in lieu of yes/no… Identify f consistent nonverbal SIGNALS SG S Idiosyncratic movements or gestures that may have a meaning Are repeated in similar contexts by communicator Post them for unfamiliar care providers/communication partners Bob’s Signal Dictionary When I put my head down = I don’t like what is happening When I lift my leg = I’m listening and want to participate When I withdraw my leg = I have pain somewhere When I purse my lips = Happy to see you

Bob – “nice to see you”

AAC = LINK at Stimulation (Early) stages Volitional, purposeful (low level) behaviors

Involuntary, reflexive behaviors

Video – Mike & Matt

Mike’s background Snowmobile accident Induced coma coma, ICU – out of town Transferred back to Pittsburgh Children’s Hospital – “minimally responsive” DC due to “lack of progress/not ready for rehab” SNF near his home 1 doctor and dedicated family kept ball in the air 3 years post – former student initiated contact

Mike’s first communicative responses at 3 years post NG tube/NPO Poor posture Limited movements BUT bright eyed/focused (but crossed) gaze Kissed my hand Maximizing respiration> eventually consistent voicing onset with resistance (arm wrestling) E Emerging i orall motor t movements t – volitional liti l A-e-i-o-u with limited labial/lingual movements

Yes/No Topical Interactions 1) eye blink responses

2) Thumbs up for yes

Can hit switch to play visual-motor games on computer with no assist Better deictic skills Ranchos Level 6 - cognitively Pureed-soft P d ft diet di t with ith moderate d t residual id l dysphagia Finally ready for REHAB 3 days per week, 3 hours rehab

House remodeling/going home in 3-4 months Family committed to long-term rehab

Starting g to move Upper pp Extremity

Now – 5 ½ years post Intermittent 5 words phrases with moderate dysarthria Seating and positioning have a significant impact on motor speech h ability bilit (but (b t tough t h to t manage and d maximize i i d due tto height) Anomia interferes with more spoken communication Cognitive ideation and memory retrieval challenges “ But recognition memory is relatively preserved for remote and salient recent events

Head nods yes/no and says it – tag yes or no helps Can access 6-8 message display on device

What are the pertinent p issues? Access to services – the “accidental” approach to getting patients what they need (in the US) Specialized approaches “hooked” him Internal competence versus ability to demonstrate (motor challenges) Did he change cognitively? Or, did access allow us to see what was there for several years during “locked in” phase Should he have been identified earlier as a deserving candidate for rehab services (adapted for patients with severe motor deficits) ? Was he

Th St The Structured t dL Levell

AAC During the STRUCTURED S UC U Level e e AAC= A “Window” AAC Window to communication “Mid-Recovery” Patients – Moderate Impairments Ranchos Levels 5-6 Natural speech abilities typically emerge at this stage of recovery Those who don’t recover natural speech continue to have severe cognitive/language and/or motor speech impairment

Predicting g Natural Speech p Recovery Recovery of speech due to cognitive clearing (D (Dongilli, illi H Hakel k l&B Beukelman, k l 1992) 1992).

Out of all TBI patients who were non-speaking after emerging from coma (RLA Stage 2) 2), 0 of 27 did not talk until they were at Rancho Stage 5-6. Within this group – a subset never regained speech. Predictor: Iff patients demonstrated continued primitive oral reflexes (chewing, sucking, rooting), they did not become functional speakers p even after reaching g Rancho Level 6 (brain stem too involved) Implications

Persistent Speech Deficits Severe motor speech impairment (often at brainstem level) may be due to motor programming, planning and execution or due to severe flaccidity or spasticity or a combination of the two Severe cognitive impairment and language impairment (e.g., aphasia) or a combination of the two Late speech recovery Anecdotal reports of natural speech recovery over many years (Workinger and Netsall, 1992)

New Medical Interventions = New Clinical Profile? Early/aggressive intervention focused on reducing d i th the functional f ti l damage d due d tto b brain i swelling in TBI B Bone flap, fl medications di ti

Preserves brainstem resulting g in lower incidences of patients with severe motor speech deficits? Now- lack of recovery of natural speech appears to be more related to SEVERE/PROFOUND cognitive involvement

Structured Level: Clinical Profile Responds better in highly structured situations Primarily a “cued” cued communicator Attention, perception, memory are significantly impaired New learning is difficult May see agitation during new, complex activities Severe motor impairments may persist (affecting access to communication) Vi Visual l iimpairments i t

Structured Level Goals Components of Assessment Assess specific communication needs

May be dependent upon context, partners and environment (e.g., acute rehabilitation vs. long-term care vs. home)

Assess capabilities p

Visual/perceptual abilities Physical access abilities M i and d symbol b l use Message representation

Assess degree g of cueing g and structured required q

Techniques at this level require high levels of structure and support from communication partners

May need to re-assess frequently

significant changes can span 1-3+ years

Levels of Support Independent Communicator=initiates in different environments. variety of familiar/unfamiliar partners, insight to compensate for deficits w/o external reminders, i d iindependently d d tl use strategies, t t i effective ff ti and d efficient, ranchos VIII Cued Communicator=Requires some level of partner dependent cueing, situational cueing, some level of difi ti tto use effectively ff ti l and d efficiently, ffi i tl R h VI modification RanchosVI & VII Dependent Communicator=Relies on others (trained communication partners) to communicate, structure & redirection, di ti cognitive iti iimpairment i t significantly i ifi tl affects ff t communication, Ranchos III-V

Interventions for Structured Level: A Window 1) System for signaling attention

Bob’s attention-getting and acknowledgement buzzer

Caveat: Failed as a yes/no signal signal, but became Bob’s Bob s acknowledgement signal in conversations

2) Increase reliability of yes/no p response Startt with St ith obvious, b i over-learned l d methods th d tto ttap iinto t automaticity (e.g., head nods) Other options: thumbs up/down, up/down eye movements movements, limb movements, mouth movements Single g message g devices ((e.g. g Big g Mack, Little Mack, Go Talk Button) Low tech boards/cards Provide cues for yes/no system use (may be required each time) Staff/family education on level of cuing/support required to promote consistency and provide multiple opportunities for practice

David: Yes/No System

Leigh: Yes/No System

3) Choice-making for activities from multi-symbol sets Written Choice conversation - partner presents choices within ongoing conversation

Picture/word boards – fixed choices, contextual activities Object boards

Examples of spontaneously generated written choices within conversational topics In the winter do you “ski...hunt…watch TV or drink hot chocolate?” “Do you like…blondes? Brunettes? Or Redheads?” Is your favorite team the “Pittsburgh Steelers?” or “Cleveland Browns?"

Rating g Scales

Laminated scale to answer “how much do you like the election results…”)

some A little None

A lot

Bob “punches” with his right fist at his numerical answer

Maps “Here is Nebraska, now show me on the map where you lived before Nebraska.. California, Arizona, Texas…”

4) Use voice output aid to i t basic b i biographical bi hi l communicate info Fixed messages, familiar, over-learned Context-specific, role-playing Navigation (change in screen or in overlay) may be managed by communication partner at this point

5) Develop adaptive computer access so clients can engage/truly participate in cognitive retraining Direct Selectors: expanded keyboard, keyguards, synthesized speech output, infrared modules alt keyboard Attention activities Spelling Commands Math a Writing Word puzzles p Print Shop Diary

S it h U Ad t tto computer t + single i l Switch Users: Adapters switch software, infrared alt acess Ablenet Marblesoft/Simtech www oneswitch org uk Swifty y by y Origins g I-pad applications C fabricate f b i t or build-up b ild t b ht stylus t l (P Can store-bought (Pogo)) if finger touch not accurate Word of caution- no screen sensitivity controls on these devices (not appropriate for some physical impairments) Apps (My Talk, Proloquo2go)

Switch Adapted p Mouse from Infogrip

Switch adapter (Don Johnston) with USB connector t ffor computer t access to single-switch software

Keyguards Can be fabricated with foam or splinting material for some devices d i ((partner with i h your OT!) Splints, p , universal cuffs,, built-up pp pointers

The Structured Level: Case Examples

David-Scanning David Scanning Low Tech

David Direct High Tech David-Direct

The system……

Leigh-Modified Leigh Modified Direct High Tech

Lee-Speech & Modified Direct HT

Jesus Speech & High Tech Jesus-Speech

IV. Compensatory p y Level: A Tool

AAC During g the COMPENSATORY Phase

AAC TOOL for communication AAC= A “TOOL” Ranchos Levels 6-7-8

Many have severe to profound motor speech deficits due to neuromotor impairment (basal ganglia, cerebellum, insula, brainstem bilateral motor strip lesions) brainstem, Aphasia may be present Increased independence Behavior is generally appropriate, goal directed Decreased performance as complexity of task increases Poor monitoring, insight, problem solving, organization, flexibility, memory, attention, inhibition skills may exist

A Tool= Assessment for Long Term AAC Decisions Involves traditional ADAPTED comprehensive AAC assessment (Formal, feature and criterion based) Assessment components Communication needs, barriers, goals Environment, support, and expectations Cognitive/language g g g abilities Motor speech Physical access abilities

Communication needs, barriers, goals en ironment ssupport, pport goals, environment, expectations Informal interview

Communication Needs Assessment (Fager, (Fager Doyle, Doyle Karantounis, 2006)

G l Goal: Identify targets for intervention U d t d (broadly) (b dl ) challenges h ll th t require i Understand that further assessment Find out what motivates client/caregivers How much support is available for high/low tech p options Crucial to assess expectations (may need to reshape)

The Communicator Types ( i it d) (revisited) Two groups typically seen at this stage: Independent Communicator=initiates in different environments. variety of familiar/unfamiliar partners, i i ht tto compensate insight t ffor deficits d fi it w/o / external t l reminders, i d independently use strategies, effective and efficient, ranchos VIII Cued Communicator=Requires some level of partner dependent cueing, situational cueing, some level of difi ti tto use effectively ff ti l and d efficiently, ffi i tl R h VI & modification Ranchos VII Crucial component of assessment- expectations vs. reality

Cognitive/language abilities Remember: Many with TBI retain the ability to spell/read *Remember: (over-learned and often preserved)- unless significant aphasia is present Language g g (many ( y formal choices, WAB, BDAE)) Auditory & reading comprehension Verbal and written language formulation and literacy

Symbol Recognition Skills (Garrett & Lasker- 2007: Multimodal Communication Screening Test for Aphasia – MCST-A – available Pragmatics (topic maintenance, turn-taking, proxemics) Cognition (Grigsby (Grigsby, MMSE)

Memory Initiation Attention A dit Auditory processing i Ability to shift/mental flexibility (Wisconsin Card Sorting, Behavioral Dyscontrol Scale) Navigation- assess ability using Symbol Trails Subtest of the C Cognitive iti Li Linguistic i ti Q Quick i k ttestt (W (Wallace, ll H Hux, B Beukelmank l i press)) in

Physical Assessment gp g ((may y need referral)) Ambulation,, seating/positioning Visual screening (e.g., Visual Screening worksheet- Fager, Doyle, Karantounis, 2006) A it perception, Acuity, ti field fi ld cut, t neglect l t Referral to occupational therapy, neuro-opthamologist Hearing status Physical access capabilities Direct selection (any modifications that can “help” help direct access with hand such as changing touchscreen sensitivity, touch exit, etc.) Head/eye tracking as alternative direct access mode Direct selection preferred as cognitively less demanding Scanning (switch activation site) site), 1 or 2 switch (rowcolumn scanning requires motor planning and timely execution)

Speech Capabilities

Speech can be part of communication “system” Motor speech assessment System approach to assessment (respiratory, (respiratory phonation/laryngeal, velopharyngeal, oralarticulatory) Prosthetic management (VPI) Voice amplification Potential for continued improvement Motivation to use speech Incorporating speech in a functional way and addressing dd i llong-term t speech h recovery goals l may help “buy in” of AAC device use

Choosing a System

Trial, trial, trial….

May be difficult to make long-term long term recommendation in one shot

Trial SGDs as part of a long term SYSTEM No tech, low tech, high tech (need to address all three) Remember: spelling skills often remain preserved preserved…. Pictures/transparency/abbreviations vs spelling only Digital/personally pictures vs. symbols g p y relevant p y

Cognitive demands of navigation strategy Complexity/location/design/configuration/size of display Memory demands of message storage/retrieval Feedback Level of facilitator support available and required for recommended system

Communication “systems”y examples No tech Speech/prosody use in certain contexts for certain requests q ((mayy be understood onlyy byy caregivers) g ) Gesture (supply gesture dictionary if extensive and if gestures highly idiosyncratic) Modified finger g spelling p g Prosthetic devices (palatal lifts, nasal obturators) Low tech Alphabet supplement (incorporating functional use of speech capabilities) Topic p supplementation pp

Word of caution- alpha may be easier, both may require extensive cues to use

Writing/drawing g g Communication boards/books

Supplementation Board with Word/Phrase Di ti Dictionary Small Talk



• Family Famil y Personal

A B C D E F G H I J K L M N O Transportation P Q R S T U V W X Y Z Trips Weather Sports Spo ts Shopping

Spoken S k Word & Phrase 1 2 3 4 5Please 6 repeat 7 8 Dictionary Will spell p words 9 10 words Maybe Don’t know



Forget it i



Start over

Speech Practice List

High Tech iPad/iPod Touch (as supplement or precursor to SGD) Word of caution: may not be accessible for those with physical impairments Not DME- not covered by insurance Apps SpeakIt, Apps: SpeakIt P2G, P2G NeoSpeech apps apps, Icomm Icommunicate nicate Simple digitized speech devices Single message systems (AbleNet) St ti di Static display l (G (GoTalk-Attainment T lk Att i t Company) C ) Text-to-speech devices Lightwriter (Tobii/ATI) Allora (Jabbla) Dynamic systems Maestro, V or Vmax (Dynavox) Mercury (Tobii/ATI) Alt-chat (Saltillo) What high tech devices you use/recommend are often strongly influenced by customer support- HOWEVER, O still need to feature-matchf may need to step outside of your “comfort” zone to get appropriate technology

Computer support for distant communication and social engagement VERY motivating/functional g Facebook apps on iPad/iPod Touch

Word of caution: May need to have monitoring/support in place Visually simple as advertising is not there (so far)

CogLink- (simplified desktop and email interface- veryy easyy to use)) Onscreen keyboards (not just for eye /head tracking) Screen magnification and zoom software Word prediction (Soothsayer) Switch-adapted mouse options Joystick/roller ball mouse Th b joystick Thumb j ti k for f minimal i i l movementt (wireless ( i l presenters)

Communication Intervention Goals AAC system as a tool to increase functional communication and participation across settings and partners Focus on maximizing accuracy, efficiency and effectiveness of communicative interactions Identifying y g communication breakdowns and effectively and efficiently using repair strategies Identifying and appropriating a support system for operational, strategic and social competency Utilizing natural speech capabilities- planning for the future

Decrease Cognitive & Physical g y Demands Complexity

Familiar/over-learned Message storage/retrieval/transparency Consistency throughout the system Color coding g Symbol use/transparency Feedback –auditory/visual/tactile Strategy cues

Message g storage/retrieval g challenges- example Rick Text to speech AAC system: LightWriter Text-to-speech YEARS of intervention through OP and University Clinic targeting more efficient message retrieval strategies (with no luck) Spells everything, spells how he “thinks”, no ability to self-monitor for brevity

Rick video

The Journey=Promoting y g Success

List of operational steps

Which modality to use and when Practice with scripts Practice with role-play (with ( caregivers as well as patient- teach how/when to cue to ensure communicative success) Practice in functional situations Charts with reminders to place and charge devices Revise systems continuously but systematically (don’t want new learning to overwhelm communication)

Case Example p

(severe physical impairment/residual cognitive deficits) Taken from: Fager, S. & Spellman, C. (2010-in press). Augmentative and alternative communication intervention in children with traumatic brain injury and spinal cord injury. Journal of Pediatric Rehabilitation Medicine. McKenzie: 12 y.o., severe TBI Quadriplegic severe spasticity, spasticity limited UE control Quadriplegic, control, able to control gross head movement left/right Severe visual impairments (probable cortical blindness) Initial communication system: thumbs up/down for yes/no, two single messages devices mounted near head for context dependent communicationcommunication max cues

L t stage: t Late Trial switch scanning- ability to follow and answer questions appropriately using AAC device (Vmax by Dynavox) helped team identify patient’s entry into later stage of recovery (Rancho VI) Focus of communication intervention Trialing 1 vs vs. 2 switch scanning (due to motor deficits deficits, able to manage 1 switch most consistently and able to use row/column scanning) Teaching her how to navigate between multiple pages using auditory scanning (at end of inpatient rehab stay able to navigate through 2 levels with minimal cues) S lli novell messages with ith verbal b l cues ffor attention/focus tt ti /f Spelling on task and recall of question Utilization of vocalizations for attention Training family/staff to give verbal + tactile cues for attention during different times of the day (fatigue, spasticity meds) Continued to use thumbs up/down for yes/no as most reliable, fast and easily identifiable method

Computer access HIGHLY motivated by Facebook Developed partner-assisted activities that revolved around updating FB status and writing on friends’ walls Message generated using AAC device and caregiver entered on computer

Trialed screen reading software but cognitively demanding (EVERYTHING on screen being read) Due to visual impairment and cognitive deficits, McKenzie required more support than off-the-shelf screen readers could give her (needed to orient her to the post being read- remind her of context, etc.)


Long-Term AAC Use Patterns

TBI/AAC Follow-Up Survey (F H k l (Fager, Hux, & B Beukelman, 2006)

Initial data on 25 individuals

Rancho Level VI-VIII Relied on AAC for a minimum of 3 yrs High tech AAC recommended for 17

13 still using (1-funding issues, 2- lost support, 1abandoned) Low tech AAC recommended for 8

5 still using (2-regained functional speech, 1awaiting evaluation)

High Tech Low Tech




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Message g Formulation Strategies (n=13)







Message Retrieval Strategies (n=13) 100% 80% 60% 40% 20% 0% Letter by Letter Spelling

Alphabet Encoding

Iconic Encoding

Semantic Compaction

Word Prediction

Summary Large majority of TBI patients at this stage have used spelling Familiar, over-learned Does not load memory (like retrieval of stored messages)

Did not easily learn abbreviations Did not easily use prediction Rarely used encoding Did nott easily il use scanning i Did not use semantic compaction (Minspeak) generatively

Transitions in TBI Impact p on communication

Life long Disability Life-long Disability and life changes over 20, 30, 40 or more years Changing living environments over a lifetime Slow neurologic changes over time

Service Delivery y and Reimbursement Past service delivery and reimbursement longer inpatient stays evaluation “centers”

Current service delivery and reimbursement brief stays AAC more widespread

Clinical Challenges Current reimbursement/service delivery models (pros and cons) Slow neurologic changes over time Continuity of care across multiple contexts over many years Complexity of motor and cognitive impairments Heterogeneous population

Transitions Case Illustration: Rick 46 y.o. male Sustained severe TBI 1986 airplane accident (crop dusting) TBI cerebral and brainstem contusions, TBI, contusions hypoxic encephalopathy related to exposure to insecticide

History ICU-1 month Acute Inpatient RehabRehab 6 months Skilled nursing facility- 3 years Residential facility- 2 years Home with full-time care-giver- 10 years Assisted Living Living- 5+ years (current)

Inpatient Rehab to SNF 1 month - 1year post onset Inpatient rehab at Madonna- transitioning to SNF Nonverbal at Rancho Level V AAC Device Macaw by Zygo 4 locations- concrete pictures/messages related to basic needs Scanning Speech treatment

SNF 1-4 years post onset Skilled Nursing g Facility y Outpatient Rehab Services at Madonna Rancho Level VII TouchTalker Letter-by-letter spelling with index finger N encoding di t t i used d No strategies Rate enhancement strategy- use of salient g words in messages Speech treatment

SNF to Residential Facility 4-8 years post onset Transition from SNF to residential facility RealVoice Letter-by-letter spelling Attempts at teaching abbreviated expansion strategies- no generalization to natural contexts S hT t t Speech Treatment

Residential Facilityy to Home 8-9 years post onset Transition from residential facility to home University clinic- using RealVoice, trialing EZ Keys (Words +) for computer access Difficulty with word prediction and abbreviated expansion use Letter by letter spelling Letter-by-letter

Home with support 9-16 years post onset Living at home with care-giver and attends adult day services program AAC services at Madonna Outpatient Clinic LightWriter by Zygo (RealVoice broke) Attempts at training use of abbreviated expansion L tt b l tt speller ll Letter-by-letter

Home to Assisted Living Current Care-giver quit- had to move to assisted living LightWriter Letter-by-letter speller On second-generation LightWriter

Comments Multiple environments Developed ability to use spelling system 1-4 1 4 years post onset Difficulty with encoding strategiesstrategies otherwise successful with AAC Continuity of care across multiple environmentsenvironments multiple caregivers and professional staff


Guiding g Principles p in AAC Intervention TBI Identify a communicative purpose for expected behaviors Embed opportunities for behaviors into a familiar, meaningful i f l routine ti (Yl (Ylvisaker i k &F Feeney, 1998) Pause pause pause. But expect a response Assign meaning/interpret involuntary or emerging behaviors to shape the into purposeful purposeful, communicative behaviors M lti l trials/opportunities Multiple ti l / t iti within ithi a single i l session i Fading from physical assistance/models to expectant cues

T iti ffrom clinic li i tto other th partners, t l lif Transition real-life contexts Consider project-based activities - example Decorate gift paper with switch activated paint art Choose goofy presents – match to photos of clinicians Present to primary clinicians Announce with single switch message device “I would like to give you this present…you’re such a h i ” great therapist” Memory rehearsal – “ what do you do with Melissa??

Revise communication systems continuously but systematically (don (don’tt want new learning to overwhelm communication)

Conceptual Model of AAC for Brain Injury (Garrett 2003 + Fager et al (Garrett, al., 2007))

• A LINK (Stimulation(Stimulation-Level Intervention)

• A WINDOW (Structured(Structured-Level Intervention) Compensation--Level • A TOOL ((Compensation

The Resource Augmentative Communication Strategies for Adults with Acute or Chronic Medical Conditions, D Beukelman, D. Beukelman K., K Garrett Garrett, & K K. Yorkston (2007). Baltimore: Paul H. Brookes Publishing g Co.

Thank you!

Selected References Dongilli, P., Hakel, M., & Beukelman, D. (1992) Recovery of functional speech following traumatic brain injury. Journal of Head trauma Rehabilitation, 7 (2), 91-101. Doyle, M., Kennedy, M., Jausalaitis, G., & Phillips, B. (2000) AAC and traumatic brain injury: The influence of cognition on system design and use. In D.R. Beukelman, K.M. Yorkston & JJ. Reichle (Eds Yorkston, (Eds.), ) Augmentative and alternative communication for adults with q neurological g disorders (pp (pp. 271-304). ) acquired Baltimore: Paul H. Brookes Publishing Co.

Fager, S., Doyle, M., & Karantounis, R. (2007) Chapter 5: Traumatic Brain Injury. In D. Beukelman, K., Garrett, & K. Yorkston (2007) Augmentative Communication Strategies for Adults with Acute or Chronic Medical Conditions Conditions. Baltimore: Paul H. Brookes Publishing Co. Garrett, K., Riggs, S., Schuetze-Muehling, L., & Low-Morrow, D. Unpublished presentation, Madonna Centers Centers, Lincoln Lincoln, Nebraska (1991) (1991).

Light, J., Beesley, M., & Collier, B. (1988) Transition through multiple augmentative and alternative communication systems: A three-year case study of a head injured adolescent. Augmentative and alternative communication communication, 4, 4 2-14. Ylvisaker, M. & Feeney, T. (1998) Collaborative Brain Injury Intervention: Positive Everyday Routines Singular Publishing Group Routines. Group, Inc Inc. San Diego.

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