supporting communication of individuals with minimal...

http://aac‐rerc.com 1

SupportingCommunicationofIndividualswithMinimalMovement

DavidBeukelman

UniversityofNebraska

SusanFagerMadonnaRehabilitationHospital

AwebcastfortheAAC‐RERC

Slide1Notext(PLEASEWAITWHILETHEWEBCASTLOADSINNOTES)Slide2DB:Hello,mynameisDavidBeukelmanfromtheUniversityofNebraska–Lincolnandmedicalcenter.AndtodayI’mjoinedbySusanFager,andSusanbywayofintroduction,tellmealittlebitaboutyourroleintheAACfield.Slide3SF:Yes,certainly.I’mtheassistantdirectorofourcommunicationcenterattheInstituteforRehabilitationScienceandEngineeringatMadonna.Slide4DB:And,youalsohavearesearchrole…SF:Wedoresearchattheinstitute;wefocusonnewandemergingassistivetechnologieswithadultswithsevereimpairments.Slide5DB:Thiswebcastthatwearegoingtopresenttoday,comesoutofseveralyearsofworkthatwe’vebeendoing,tryingtoservepeoplewithveryminimalmovement,andtryingtosupporttheircommunication.Inthiswebcastwewillbediscussingseveraldifferenttypesofpeoplewithdifferentmedicalconditions.Slide6ThiswasapresentationthatwedidattheRESNAortheRehabilitationEngineeringSocietyofNorthAmericain2009,aswellasontheWorldCongressforDisability.ThewebcastissponsoredbytheRehabilitation,EngineeringandResearchCenteronCommunicationEnhancement,wecallittheAAC‐RERCforshortandwewouldlike


tothankthemfortheirsupportandwewouldespeciallyliketothankOlindaandMerleandJohn.Youwillmeettheminvideosofthefilmtodayandthey’redoingmorethanjustdemonstratingtheequipmentforus.Theyactuallyworkwithuscloselyandtheygiveustheiropinionsaboutwhattheythinkaboutdevelopingtechnology.Theyareverymuchapartofoureffort.WealsowouldliketothankTomJacobsofInvoTekwhodoesalotofourtechnicaldevelopmentworkandofcoursecontributesinalotofotherwayswithhisideasaswell.AndthenLauraBallwhousedtobehereinNebraskaandisnowworkingatEastCarolinaUniversity.LaurawasveryactiveintheALSareaandyou’llbemeetingmoreofherworklateron.We’dalsoliketothankAmyNordnesswhonowworkswithusintheALSarea.Finallywe’dliketothankVickiPhilippifromtheEducationDepartmentatMadonnaRehabilitationHospitalwhohelpeduspreparethiswebcast.Slide7Thepresentationratherwillcomeinthreedifferentparts.Thefirstonewillbetotalkaboutpeoplewhohaveminimalmovementasaresultofbrainstemstrokeandtheypresentauniquechallengethatwe’dliketotalkabout.OurworkhereispartofaprojectcalledtheNewInterfaceProject,whichispartoftheAAC‐RERC.ThegoalofthisprojectistodevelopnewAACinterfacesforpeoplewhopresentinterestingchallenges.We’dliketocommentatthebeginningthatwe’regoingtotalkaboutsometechnologytodaybuttruthfullytherearemanyothertypesoftechnologythatarequitesimilartosomeofitthat’sproducedbyothercompanies.We’dliketoreferyoutoTechConnect,whichisawebsiteandaresourcethatisonthissameAAC‐RERCwebsite,forextensiveinformationaboutthetechnologyintheAACfield.Let’sbegintodaywithpeoplewithfourdifferentetiologies.Susan,youdoalotofworkwiththeseindividuals.Youwanttokindoftalkaboutthechallengesyoufacewiththem?Slide8SF:Solet’stalkaboutsomeofthechallengesthataclinicianfaceswithworkingwithindividualswithminimalmovementcapabilities.Firstoff,alotofthemaremedicallyunstableandsoitreallychangesyourinterventioninthatyouoftenhavetolimittheperiodsoftimeyouworkwiththem.Youhavetoworkaroundthemedicalcareprovidersbecausetheyaresomedicallyfragile.Theyareveryfatigued,andtheirenduranceislow.Becausetheirmovementsaresolimited,it’sdifficulttofindtechnologythatfitswhatmovementabilitiestheyhave.Slide9Positioningisanissue.


Alotofthemareinbedandcan’ttoleratesittinguprightoraren’tabletogetupinawheelchairyet.Also,thetechnologytrainingandtheongoingsupporttheseindividualsneedbecausetypicallytherecoveryisaslowprocessoriftheirinadegenerativeconditiontheymightbeinawiderangeofsettingsandsotrainingisquiteextensive.DB:Don’tyoualsohaveauniquesituationifsomeonehasamedicalissuelikethisthatasyou’retryingtoservethemyoureallyhavetomaintainday‐to‐daycommunicationbecausetheyneedtocommunicateabouttheirmedicalcondition?SF:Right.Alsothechangeinstaffandcaregiversthattheyhaveinaday‐to‐daysituationinamedicalfacilityreallyrequiresthaton‐goingcommunication.Slide10DB:Todayaswetalkaboutthesedifferentareas,we’regoingtobetalkingacertainamountaboutclinicaldecision‐making.We’dliketocallyourattentiontoabookthatwasrecentlypublishedanditdealswithachapterintheareasofAACandintensivecare,brainstemimpairmentandspinalcordinjury.AsIpagethroughittraumaticbraininjury,ALS,degenerativediseases,Aphasia,andsoon.WhatwedidisweinvitedclinicalexpertsinAACacrossthenationtogettogetherwithcolleagueswhoarealsoveryexpertinthatareaandpresentachapterontheclinicaldecision‐makingprocessfortheseindividualsandwouldencourageyoutotakealookatitifyou’resomeonewhocurrentlyservespeoplewithchronic‐acquiredmedicalconditionsorsomeonewhoplanstopotentiallybeinthefuture.Whatwe’regoingtodowiththispresentationiswe’regoingtokindoftalkaboutinterventionphasessincethat’showthebookisorganized.Whydon’tyoustartwiththeinitialassessmentforthesepeople?Slide11SF:Someoftheinitialthingsthataclinicianneedstoconsiderinworkingwithanindividualwithbrainstemimpairmentarefirstestablishingayes/noresponsemode.It’sveryimportantfortheseindividualstobeabletocommunicatetheirbasicneedsandoneoftheearliestsignalsweoftentrytofindisawayforthepersontosignalayes/noresponse.Additionallyanurse‐callsystemisessentialforanindividualbecausetheyaresomedicallyunstableandthefactthattheymighthavesomeemergentmedicalneedsthattheyneedtocommunicatetoanursefindingawayforthemtoworkacallsystemisessential.Someoftheseindividualsaren’tabletoaccessatraditionalcallsystemorevenanadaptivecallsystem.Atourfacilityisanexampleinthesesituationswherewehavetoestablishafifteenminutecheckingsystemwherenursingisrequiredtocomeinandcheckonthatpersoneveryfifteenminutestomakesurethatthey’reokayandthattheirneedsarebeingmetuntiltheycanhaveareliableandconsistentwaytoaccessacallsystem.So


yourinitialassessmentreallyfocusesonthosebasicareas.Earlyinrecoverywefindtypicallythatindividualsarecommunicatingwhenthey’reabletocommunicate,they’redoingitinalow‐techorno‐techmeans.Someexamplesofthisareeye‐gazesystemssoearlyinrecoverywe’llseethatapersonhaseyemovementandthatmaybeoneoftheirearliestresponsesandsowe’reabletousethatmovementinaneye‐gazeresponsetocommunicatetheirneedsoreye‐linkingorpartnerdependentstrategy.DB:Whenyou’redoingtheeyetrackingortheeye‐gaze,howmuchtimedoyouspendremindingstaffofthesystemandwhataresomeofthebarrierstheyface?SF:Actuallyyouworkquitecloselywithstaffindevelopingasystem.Usuallyyouwantittobesimplesoalotofindividualscanpickitup.____________________________________________________________ ______________________________Slide12Newagencystaff,floatstaffthatarecominginithastobeareallysimple,easytouse,concretetypeofasystem.Someofthebarriersarethechangeofstaff,thenewpeoplethatyou’llbeworkingwith.Educationisprobablyonofthelargestrolesyouplayearlyininterventionsoonceyoufindarealeasy,consistentmethodofcommunicationthenmakingsureallofthecaregiversaretrained,thefamilyistrained,thatthereisinformationaboutitonthewall,that’sjustaseasyaspossibleforanyindividualtouse.DB:Maybeyoucouldtalkalittlebitaboutthemedicalcourseofthesepeople,IguessIdon’tmeanmedical,Imeanwherearetheyreceivingcarebecausethatalsoseemstofitintothisalittlebit.SF:Alotoftheseindividualsyou’llfindareearlyinrecoveryinanacuterehabenvironmentorinanacutehospitalenvironment.It’sprimarilymedicalandmedicalstaffthatarearoundthem.Theymaytransitionbrieflyintoanacuterehabenvironmentwheretheymightgetdailyrehabifthey’remakingrecovery.Insomecasesaswelltheseindividualswillgofromanacutecaresettingandbrieflyinrehabbutthenquicklyintoalong‐termskillednursingfacility.DB:Sothatalsomeansthey’vechangedenvironmentstwoorthreetimesandsotheyhavenewstaffthathavetobeprepared.Especiallywhentheygetintolong‐termcaredependingontherespiratorystatustheymaybeataplacewherepeopleareveryfamiliarortheymaybeinaplacewherethestaffisnotthatfamiliarwithpeoplewhoarethissevere.SF:Right.OnechallengethatIconfrontalotiseverybodyhavingtheirowntechnique,low‐techtechniqueofcommunicatingwiththepatient.Itcanbeveryconfusing.Soifeverybody..


DB:Ohyoumeandifferentstaffmembers.Theycomeinanddodifferentthings.I’mgettingthepicture.SF:Sothatcanbechallenging.You’reroleisdefinitelyeducationandhavingarealpresencewiththepatientandtheircareandmakingsureeverybodyisonthesamepage.Itjustresultsinactuallythepatientbeingmoreaccurateintheircommunication.DB:Oneofthethingsthatwetalkaboutsometimesisthatapersonisaccurateintheircommunicationforthefirstfourorfiveturnsandthenafterthatthingsstarttogetalittledifficult.Youwanttotalkalittlebitmoreaboutthatandwhythatmayhappenandsoon?SF:Yes,we’veseenthatquiteabitinseveraloftheindividualsweworkwith.EspeciallyI’veseenthatalotinindividualswhohavehadbrainstemimpairment.They’resofatiguedandtheyhavetoworksohardjusttostayalertandawakeinordertorespondtoyourquestionsandusethetechniquethatyou’retrainingthemtousethatafteraboutfourorfiveminutesitstartstofallapartbecausethey’rereallyjustlosingtheirabilitytoconcentrateandarejustsoincrediblyfatigued.Inthesecaseswe’vereallyworkedhardtofirsteducatethestaffastowhat’sgoingonsotheyunderstandthispersoncancommunicatemeaningfullybutyouneedtokeepyourinteractionsbriefwiththemandthenthatalsohasledustoaltertheirrehabschedulesoinsteadofgettingahalfhouroftreatmenttheymightgettenorfifteenminutesatashotandjustgetitmorefrequentlythroughoutthedaywithmorerestbreaks.DB:Ithinkitreallyshowsupwheneveryonecomestogether,familycomestogether,thestaffcomestogether,thepersonisthere,andtheywanttohaveameetingtodecideaboutthefuture.Thispersonhasfiveminutesorsoofinvolvementandtheseconferencesoftengolongerandyouhavetobereallycarefulthepersoniscommunicatingwhattheyreallywanttocommunicateatatimelikethat.Slide13SF:Sothenyoumoveontotheformalassessmentsandsomeofthekeyconsiderations.Whenyou’redoingaformalAACassessment,fundingisaconsiderationwiththispopulationprimarilyduetothelong‐termplacementdecisionsthatgetmade.SincetheseindividualsaresoseverelyimpairedasImentionedearlier,theymightjusthaveaverybriefstintinrehabilitationsotheymightactuallyevenskipitaltogetherandgofromanacutehospitaltoalong‐termcaresetting.ThisdramaticallyimpactstheiraccesstofundingforAACsystemsanddefinitelyneedstobeconsideredasearlyaspossible.


DB:NowImightslipinhereandsayandthisisparticularlytrueintheUnitedStateswhereMedicaredoesnotfundtheseequipmentsinalong‐termcarefacilityalthoughMedicaidmight.SF:RightDB:Ofcoursewhenyoulookinternationallyothercountrieshandlethisinaverydifferentway,butgoon.SF:Also,technologyisanotherconsideration.We’refortunatethattechnologycontinuestoadvanceandthereisawiderrangeofoptionsavailableforpeoplewithminimalmovement.Someoftheeye‐gazetechnologies,thehead‐trackingtechnologiesmakeahigh‐techrecommendationdefinitelypossibleforthisgroup.Someotherthingstoconsiderwhenyouformallyassesssomebody,thefactthatthere’sreallygoingtobe,it’snotjustaone‐timeassessment.Inthisgroupitiskindofanon‐goingfollow‐upstrategyifyou’reabletokeepintouchwiththeseindividuals.Ifnotthenestablishingacommunicationadvocateforthemisabsolutelyessentialbecauseovertimetheymightchangefacilitiesthattheyliveinortheirlivingsituations.Theymightgofromafacilitytohomeorfromahometoafacilityortwodifferentfacilitiesandwithinthefacilitiestherearecommonlychangeswithstaffturnover,andjustmakingsuretheyhaveanadvocateinplacesothaton‐goingeducationcanoccur.Ifthereareproblemswiththetechnologyitcanbetroubleshooted.Thereissomeonetogoto,that’sreallyanessentialpartandsomethingyoureallyneedtoconsiderwhenyou’redoingaformalassessmentwiththispopulation.DB:Onceyou’ve,thatformalassessmentisabigprocesssothattakessometimeandittakessometestingandfeildtrialandsofinallyyousettleonapieceofequipmentforsomeoneorastrategy.Inmostcasesitisaseriesofstrategiesisn’titinthatyouhaveattimeswheneverythingissetupinacertainwaytheymayusetheirhigh‐techequipmentbutthenothertimeswhenthey’reindifferentsituationstheymayuselow‐tech.Infactroutinelyuselow‐techaswellsotheyarewhatwecallmulti‐modalcommunicators.Anywaysoyou’vegottentothatstageandthenwhat’sthelastphaseofintervention.Slide14SF:Wellthisphaseistheon‐goingassessmentpiecewhereyou’rereallycustomizingthetechnology,trainingthestaffandcaregivers,thecommunicationadvocates,butalsoyou’repreparingformodificationsovertimeinkeepingthoseinmind.Insomecasesindividualswillincreasesomeoftheirmotorfunctions,buttherecoveryistypicallyveryslow,butyouwanttomakesurethecommunicationadvocatesandthecaregiversrealizeifthereisachangeinmotorfunctionthenthatmightpromptadditionalassessment.Thatmightmakeaccesstodifferent


technologiesormoreefficientstrategiespossibleforthisperson.Someindividualsalsohavechangesinspeechsosomemightberecoveringsomeoftheirnaturalspeechcapabilitiesandthatmightchangethelow‐techstrategiesthatyouusewiththem.Justestablishingthatlong‐termsupportsystembecausetherearechangesovertimenotonlyintheirlivingsituationbutalsowiththeirownphysicalstateandmakingsurethatlong‐termsupportsystemknowswhenadditionalassessmentsaretriggeredoradditionaltreatmentsarerequired.DB:Therereallyareseveraldifferentstrategiesinthelong‐termthatpeopleuseforspeech‐generatingdevicesfortheseindividuals.Slide15Oneofthem,andtheonethatwasusedinitiallywasswitchscanningandthiswaswherethesystemscansthroughyouroptionsandyouactivateaswitchtomakeyourchoice.Thiswas,inanearliertime,muchmorewidelyusedthanitisnowpartlybecausewedidnothaveanyotheroptionsfrankly.Now,whilesomestilluseit,itisusedmuchless.Itiscognitivelydemanding.ThecommunicationrateisquiteslowcomparedtoothertypesofaccesstoAACtechnologyandsotodaywe’reshiftingandweusemorehead‐trackingandwe’llbetalkingmoreaboutthatforthosewhorecoverheadmovementandtheninthelastfewyearswe’vebecomemuchmoreactiveintheareaofusingeye‐trackingfortheseindividualssothatiftheyhaveeyecontrol,theycanusethattoaccessAACdevices.We’llbetalkingabouthead‐trackingnext,andtheneye‐trackingwe’llkindofcombineintheALSpartofthistalk.Slide16We’vebeenworkingonaprojectforanumberofyearsinordertogetveryprecisehead‐trackingaccesssothatapersoncanutilizealasersystemthatiseyesafesothatwedon’thaveaproblemwiththempointingittowardstafforachildrunningupandlookingintothelaserthatkindofthing.Ithasseveralcomponentssowhydon’tyoukindofintroducepeopletothatandthenwecangetontothevideoswhereweshowthatinoperation.Slide17SF:Wellthesafelaseraccesssystemconsistsofalaserpointerthatanindividualcanmounttoaheadband,theirglasses,anymovingbodypartandthenalsoalasersensingmoduleandasDavidmentionedthisisasafelasersystemandwhatwemeanbyeyesafetyisthatthesystemgoestolowpower,alowpulsingbeamthatiseyesafeuntilit’sdirectedatthelasersensingsurfacesothat’swhatmakesiteyesafe.


Slide18DB:Andonthisslide,theycanseethelatestprototypeofthatparticularsystemandyouseethedifferentcomponentsofit.It’salsoverylightweightandrelativelysmallfootprintsothatitcanbeusedinmedicalsettings,long‐termcaresettings,itcanbeeasilycarriedwiththepersoniftheygotoafamilykindofactivityoriftheyleavethefacilityforsomereasonorsomethinglikethatorgotoadifferentroominthefacility.However,we’llgetintothisdiscussionbytalkingfirstaboutsomeofthereallyearlyprototypesthatwedeveloped.Slide19SF:Soonyourslideyou’llseethepictureofourinitialprototypethatwasused,ourphaseoneprototypeanditkindofpointsoutwhatthelaserpointerisandthesensingsurface.Inthefirstpictureyou’llseethisgentleman.HisnameisMerle.Slide20Merlewasourfirstcasestudywiththesafelaseraccesssystemandintheearlystagesofusingthiswehadthreeareasofexploration.Welookedatitasaprimarycommunicationsystem,alsoasaheadmovement‐trainingsystemandasatransitionalsystem,soasysteminwhichyoucanusetotransitionintodifferenttypesofheadtracking.Slide21AsImentionedMerlewasourprimaryorearlycasestudy.Merlehadsustainedabrainstemstrokeandwhenhecametoourfacilityhewaslockedin,hehadlockedinsyndrome.ThecharacteristicsoflockedinsyndromeisthatyouressentiallyparalyzedandmaybetheonlymovementthatyouhaveisverticaleyemovementandthatwasindeedwhatMerlehadwhenhefirstcametous.Wewereabletointroducethesafelaseraccesssystemwithhimafterhe’dbeenwithusabouttwoandahalfmonths.Hestartedtoshowalittlebitofheadmovement.Priortothatheusedlow‐techprimarilyorno‐techtofacilitateasacommunicationmethod.DB:AndIrememberreallyclearlywhenweintroducedMerletothisbrandnewprototypethatwehad.Hismedicalconditionwasprettyfragileatthispointsowewentinandexplainedittohimandsaidareyouinterested?Heflashedhiseyesuptotheceiling,whichisthewayhecommunicatedyestous.Wesetitupandkindofintroducedthestafftoitandintroducedhisfamilytoitandsoon.Hehadittheninhisroom.Thethingthatimpressedisthathewasveryinsistentthatwhenhewasinbedthatthatwasturnedonsohehadaccesstoit.Didn’the?SF:Right


DB:Intheeveningswhenhehaddowntime,hewasn’tintreatmentandafterhisfamilyhadleftandsoon,hewouldthenworkwiththissystem.Interestinglyenoughwhenwewatchedhimwecouldn’treallyseeanymovement.Hewassolockedinatthatpoint.Thenthebreakthroughcame.SF:Ithinkitwasreallypowerfulforhimtoseethatheactuallyhadsomecontroloversomethingandsothatreallymotivatedhimtocontinuetopracticethatmovement.Slide22Onyournextslideagain,you’llseethepictureofhimusingitinverticalalignmentsooneofMerle’searliestheadmovementswasactuallyverticalsowehadtoarrangethemessageshewasgoingtocommunicateverticallyonthedisplay.Heusedthosetocommunicatebasicneedstostaffbutthenhealsousedthattopracticehisheadmovementtraining.DB:Soinotherwordshedidn’thavehorizontalside‐to‐sideheadmovement.Hewasjustupanddowninthebeginning.SF:Justverticalheadmovementinitially.AfterextensivepracticeonMerle’spart,hewasabletomoveoverintoanalphabetoverlay.Hestartedtogainsomehorizontalheadmovement.Slide23Asyou’llseeinthenextslide,there’sapictureofMerleusingthisdisplay,andheuseditprimarilyasalow‐techmethodsothecommunicationpartnerwouldcallouteachletterashelandedonit,andhewouldspellouthismessagesthatway.Heparticipatedincareplanmeetingsthatway.Hehadconversationswithhiswife.Hecommunicatedanddirectedhiscareswiththatmethod.DB:Wehaveavideoofhim,andthatvideowillillustratehisuseofthesystemduringthoseearlyphases.Italsokindofshowstheincreasing,butsomewhatmotorinstabilitylateronashecontinuedtopracticeanddevelopthatreallystabilized.Sowhydon’twetakealookatthevideo.Slide24VIDEOTRANSCRIPTSF:Ifyouwerehavingaheadache,paininyourhead,wherewouldyouputthepointer?


Narrator:OnceMerlebegantogainsomecontroloverheadhismovementhestartedusingthesafelasersystemtopointtomessageshewishedtocommunicate.SF:Whatifyouwerehavingapaininyourstomachorchestarea,somewherekindofinyourtorso?…Yes,goodCaregiver:Wow,righton!SF:Trytoholdithereforthecountof5.Narrator:Heusessafelaserthroughoutthedaytopracticeheadcontrolaswellastocommunicate.SF:1,2,3,4,5.That’sgood.Let’sgoupheretotheoneattheverytop,“Ifeelpain.”Holditfor5seconds.1,2,3,4,5.That’shardtodoisn’tit,hardtoholditstill.It’shardtoleaveitonone,isn’tit?It’skindofbouncingbackandforth.Canyougetthedotclosertothewords?Andtrytoholditinthisareaforthecountof3.Verygood,thereyougo!Nicejob.Nowyoucanrelax.SF:TellmewhatdidKaren,IknowKarenhasbeenhavingyoudofoodtrials.WhatdidyouandKarentryyesterdayforfood?Narrator:AsMerle’sheadcontrolincreasedhequicklyprogressedtospellingoutallofhismessagesusingthesafelaser.SF(forMerle):N,O,T,T,no,Newword,Ok,soNot,T,ONewword,soNotto…M,U,C,H.Nottoomuch,huh?Slide25DB:Sointhevideoyousawhimusingthefirstprototypeandinthisparticularslideyouseethelatestprototypethatisnearingfield‐testingrightnow.Slide26Thispicturehereshowshimusingthedeviceinasomewhatdifferentway.Youwerethere.Iseeyoustandingnexttohim.Whydon’tyoutalkabouthowheisusingitnow?SF:Merleusedthisdeviceconnectedtoalaptopcomputersohewouldspellouthismessagesontheboardandtheactualkeystrokeswouldbesenttoatextdocumentonthelaptopcomputer.Hewasinaskillednursingenvironmentatthispointsothisallowedhimtospelloutlongermessageswithoutthecarestaffhavingtostandthereandlookoverhisshoulderashewascommunicating.


DB:Sonowhereallyhastwosystemsdoesn’the?Hehasthelow‐techkindofversionwherehecanpointtotheletterandthecarestaffcancallouttheletterheispointingtoandkindofco‐constructthemessagethatheisworkingonandthenhealsohastheabilitytopreparelongermessagesthatcanbespokenthroughthecomputer.Sincehedoesn’ttravelagreatdeal,theideaofhavingtheonedeviceactasanaccesstoalaptopcomputerseemedtobeaprettygoodsolutionforhim.Didn’tit?SF:YesDB:Wefolloweduponthis.AsaresultofMerle’sexperienceandourexperiencewithacoupleofotherswebegantorealizethattherewerepeopleouttherethatmightbeabletodevelopgreaterheadcontroliftheyweregivenaveryprecisetrackingsystemlikethesafelasersystem.Slide27Whatwedidiswestartedastudy.WehadcollaboratorsfromquiteanumberofsitesacrosstheUnitedStates,andintheendwesettledonsevenpeople.Thesewerepeoplewhohadbrainstemstroke,hadveryminimalmovementorwerelockedin.Theyrangedinagefromthirtytosixtysixyears,andtheyrangedintimepostonsetoftheirstrokefromfourweeks.OnemanwhohadhadthestrokeinhislateteensorearlytwentiesIbelievehadactuallybeenlockedinoressentiallylockedinforeighteenyears.Onelivedathome;sixlivedinalong‐termcarefacility.Whatwedidisweevaluatedthemandonceagainyouwerekindoftheleadonthisprojectsowhydon’tyougofromhere?Slide28SF:Sowhatwedidisweconstructedaseriesofinterfacedisplays,kindoftargetingtheheadmovementtrainingpieceandtheyconsistedofcellsoftwosowehadtwolocationsonanoverlay.Thenwehadfour,eight,andthirty‐two.DB:Sosomepeoplestartedattwoandthentheywenttogreaterastheycouldhandleit.Okay.SF:Right.Sotheideaistheywouldbeassessedinitiallybythetherapist,workingwiththemastowhatoverlaytheycouldhandle.Theywouldworkandprogressivelyworkuptothirty‐twocells.Wecollecteddataonthefollowing:welookedattheirageandaccuracyacrossthedifferentinterfaces,theirconsistencywithlasermovement,alsoestimatesoftheirlaseruseforcommunication.Sosomeoftheindividualsusedittosupporttheircommunication.Also,wemonitoredsortoftheirhealthstatusthroughouttheevaluationreportbecauseaswementionedearlierthisisapopulationthatistypicallymedicallyinstableandfrequenthospitalizationsoccur.That’sacommonoccurrencefortheseindividualssoitwas


importanttogatherthatinformationasitmightexplainsomeoftheresultsthatwewereabletoget.Slide29Sothisnextslidesortofsummarizestheresultsofthestudyfromthesevenindividuals.Youseethatwehaveatthetoptheretheirpre‐laserAACstrategies.Sowhatdidtheseindividualsusetosupporttheircommunicationprimarilybeforetheystartedusingthesafelaser?Asyouseeallofthemusednotechnologytosupporttheircommunication.Itwasprimarilyeyegaze.Someofitwaseyemovementtocommunicateyesandno.Someofitwaseyemovementandpartnerdependentscanningandfacialexpressions.Thoseweretheirprimarycommunicationmodes.Thelengthoftrainingfortheseindividualsoccurredfromonemonthuptosixmonthsandthenyoucanseewhattheirmovementoutcomeswere.Itlookslikeeverybodyprettymuchstartedoutwithtwocells.Sotheseareindividualsthatwerereallyprettyseverelyimpairedinthattheyhadprettylimitedmovementability.Someofthemwereabletoincreasetheirmovementstocontrolathirty‐two‐celldisplay.Acoupleindividualstransitionedfromusingthesystemtousingcommerciallyavailabletechnologyatthetime,aheadmouseandaDynavox.Youcanseetherewasanumberofindividualsaswellwhohadnumerousmedicalsetbacksandwerehospitalizednumeroustimes,whichasImentionedearlierisjustacommonoccurrencewiththispopulation.DB:Whatwefoundwiththatisthatiftheydidhave,anditwasmostlypneumoniawasthattheproblem?Whentheydidhavepneumoniaandwerehospitalizedtheywouldcomebacksofatiguedthatitwouldtakeussometimesweekstogetbacktowheretheywereandsothehealthoftheseindividualsreallydetermines.Ithinkfromaneverydayclinicalperspectivethatmeansthatwhenthingsaregoingwelltheymaybeabletouseonekindofanoptionbutyouhavetohavesomefallbackoptionsincasethehealthproblemsoccur.Ofcoursetheotheryouhavetohaveacommunicationsystemthatwillsupportthemwhenthey’reinthemiddleofahealthcrisissothattheycancommunicatewiththeircaregiversandtheirhealth‐caregiverswhentheyarehospitalizedorwhenthey’reintheirlong‐termcarefacility.Wewereencouragedwiththeseresults.Youhavetorememberthatthesewereindividualswhowereonlyeyetrackingoreyegazingandeyelinkingwhentheystarted,andtherewasasubsetofthemwhenthecircumstanceswererightwereabletomovetowardaheadtrackingstrategyandatadeeperlevelitintriguedusandthemthateventhoughtheyhadbeenlimitedforaperiodoftimethatwhentheyweregiventheappropriatefeedback,veryprecisefeedbackabouttheminimummovementstheyweremaking,anumberofthemreallyincreasedtheirabilitytomove.That’ssomethingtothinkaboutandit’ssomethingthatencouragedthefundingforthenextphase.Slide30


DB:Whatwehaddonealsoiswerealizethatwiththeseindividualswithveryminimalmovement,someofthecommerciallyavailableequipmentatthetimewaswhatwecallrelativehead‐trackingequipmentwherepeoplehadtodoquiteabitofheadmovementtocalibrateitandrecalibrateit.Itrequiredquiteabitofheadmovementtoinfactinterfacewiththeaccesssystemandsowebegantoworkonasecondprojectinheadtrackingthatwasreallybasedonwhatwecallabsoluteheadtracking,atwocamerasystemforheadtrackingthatwe’vecalledtheAccuPointsystem.Whydon’tyougoon,youdidalotoffield‐testingonthisoneso?Slide31SF:Yes,wellI’lltalkaboutourpreliminarycasestudywiththeabsoluteheadtrackingortheAccuPointsystem.TheindividualI’mgoingtointroducetoyouisJohn.Heisasixty‐yearoldmalewhohaswhatyouwouldcallchronicGuillainBarre.HeinitiallycametoourfacilitywithGuillainBarre.Overtimehewasabletorecoversomeheadmovementbutthat’sessentiallywhereitlefthim.Heisnotabletomovebelowhisnecksohisconditionisabitmorechronic.DB:Now,manypeoplewithGuillainBarrehaveacompleterecoverydon’tthey?SF:YesDB:Infactthreequartersdo.SF:Rightbutthereisasubsetthathavethesechroniclong‐termconditionsandthat’sthesituationthatJohnwasin.DB:RightSF:Ataboutfourmonthspostonsethestartedtoregainalittlebitofheadmovement.Initiallyhepresentedaslocked‐inandhehadactuallyhorizontaleyemovement.Itwashisfirstmovementcapabilities.Afteraboutfourmonthshewasabletomovehisheadalittlebit.Hestartedtousealight‐touchswitchwithacommunicationdevicethatwasveryslowandveryfrustratingforhim.Ataboutsixmonthspostonsetwenoticedhewasabletotoleratelongeractivitiessohewasn’tquiteasfatiguedandhisheadmovementwassuchthatwecouldbegintotrialsomeheadtrackingtechnologies.Slide32TherewerequiteafewchallengesthoughthatwehadtoaddresswithJohn.Firstoffeventhoughhehadsomeheadmovement,itwasstillprettyminimalanditwassominimalthathecouldn’tusealotoftherelativeheadtrackersthatwereavailable.Hewasalsoinavarietyofpositionsthroughouttheday.Becausehewas


somedicallyfragilehewaslayingdowninbedquiteabit.Hehadtobeturnedtohissideforpressurerelief.Hewasinachair,butwouldhavetobetiltedbackinhiswheelchair.Sowehadtohavesomesortofaccessmethodthatcouldaccommodateallofthesevariouspositionsanditalsoneededtobearelativelysimplesetup.Hewasinaskillednursingenvironmentbythetimewewerelookingatthistechnology.Lotsofdifferentstaffprovidersandsothesimplerthetechnologythemorelikelyitwouldbeusedinthesetting.Slide33AtthattimewehadtheAccuPointprototype,theinitialprototypeavailableandwethoughtJohnwouldbeagreatpotentialcandidateforit.Todescribethisprototypesystem,it’satwoinfraredcamerasystemanditutilizesthreereflectivedotsthattheindividualplacesontheforeheadanditalsojustusesaconventionalcomputermonitorandaconventionalcomputerwithsoftwarethatwouldcomputeyourheadlocationandalignitwiththecomputercursor.DB:Ithinkoneofthereallyuniquesituationswasinthecalibrationandthatisthatthesystemiscalibratedbylookingatabulls‐eyeinthemiddleofthescreenandallyouhavetodoisgetyourselfinwhatyouthinkwillbeacomfortablepositionforthecenterofthescreenandsitthere.SF:Right.Sowhateveryourcenteristhecomputerdecides,calibratesthatcenter.DB:Thenwhatyoudoisyoumoveoncethatis,kindofyougetasignal,thenyoujustmovedowntoabuttonbelowitandthatsaysIacceptthiscalibration.IthinkthethingthatwasinterestingwithJohngettingbacktoyourmultiplesettingsandsituationshewasinisthathecouldbelayinginbedandhecouldlookatitandhecouldcalibrateit.Thenthey’dmovetheheadofhisbedupalittlebitandhe’djustlookatitrecalibrateit.He’dgoonhisside,he’dlookatitrecalibrateit.Youknowandsoitdidn’trequiremovingacrossthewholeinterfacelikemanyofthemdotorecalibrate.IthinkforJohnthatwasareallyimportantfeatureofthis.SF:Right,andalsoanotherinterestingfeatureofthissystemisthatitcouldbescaledupordownbasedontheindividual’smovementcapabilities.DB:Sosensitivitychanges:littlemovement,lotsofmovement.Ok.SF:Right.SotogiveyouanexampleinJohn’scase,becausehehadminimalheadmovementwechangedthescalingtotentoonesoalittlebitofmovementwouldallowhimtomovethecursorcompletelyacrossthescreen.DB:AndIcouldneverusetentoonebecauseIcouldn’tbethatstable.


SF:Itisverysensitive.Rightandtojustgiveyouanideaofhowminimalhismovementwas,whenwemeasureditfromthetipofhisnosehisheadexcursionitwasaquarterinchleftandrightandaneighthofaninchupordown.That’sreallyminimalmovementalmostprobablyifyouweretolookatithimyouwouldprobablysaythisguyisnotmovinghishead,butitwasenoughwiththescalingsettingsthathewasablethentocompletelycontrolthecomputercursor.DB:Ithinkoneoftheotherissuesthatrelatestothisespeciallyinthecalibrationisthatwhenyou’reinacarefacilityandyouhavemultiplestaffmanyofthemnotnecessarilycomputersavvysomeofthemare,buttheideathatcalibrationisessentiallyindependent.Thathecandoitreallyhelpsbecauseitmeansthatyoudon’thavetobringstaffintohelpyourecalibrateandevenwhenthey’rehelpingyoumaybechangeyourposition.Youcantakecareofalltherestofitwiththecomputer.Ithinkthestaffreallyappreciatesthat.SF:Rightthat’saverygoodpoint.Theydo,yesdefinitely.Slide34Someoftheresults:thepositioningwefoundthatJohnwassuccessfulregardlessofwhetherhewasinhiswheelchair,bed,layingdown,onhisside,andwealsoexaminedhowhiscommunicationfunctionswereservedbyusingthesystem.Heuseditforwrittencommunicationthroughoutthedaywhenhewasabletotoleratehistalkingvalvewithhisone‐wayvalve.HealsouseditextensivelytoemailandgetontheInternet,butatnightheusedittosupportface‐to‐facecommunication.Hewasn’tabletotoleratehisvalveovernightsoeveningandnighttimewhenhehadprettyextensivecareandcommunicationwithnursingstaffhewasabletousetheAccuPointsystemtofacilitatethatcommunicationinthosesituations.DB:Andthisisoneoftheothershiftsthatwe’rebeginningtosee.Peopleareusingthisequipmentformorethanjustface‐to‐face.AsyoumentionedontheInternet,emailevensupportingsomeofhismedicalcareyouknowcommunicatingwithpeoplethataresomeofhisprovidersthroughemailandthatkindofthing.Sowe’rereallybeginningtoseeashiftintheusepatternsofAAC.Slide35SF:Right.AsDavealludedtoearly,thesetupandtrainingforstaffwassurprisingforus,asurprisingresultinthatinJohn’scasewehadoneintensivetrainingsessionwiththepatient’sstaffpresentonhowtosetitupandbeyondthatpointJohnwasabletotrainallotherstaff.Itwassimpleenoughandheprimarilycontrolleditthathecouldtellthemtoopenupanicon,hitabutton,andhewasgoodtogo.Durationofusealso,heuseditquiteabit.Email/Internetwasapproximately2hoursaday.Face‐to‐facecommunicationwas8‐10hoursintheeveningandovernight.SoanextensiveperiodoftimeeachdayusingtheAccuPointsystem.


DB:Andhowlonghasheuseditnow?Ayearoracoupleyears?SF:Johnhasuseditnowprobably3years,3or4yearsnow.DB:YesSF:WehaveavideoofJohnthatkindofillustrateshisuseoftheAccuPointsystemthatyoucanviewatthistime.Slide36VIDEOTRANSCRIPTSF:Whydon’tyoushowhowyoucommunicateyes,Merle?Yes,sorealclearlookingupandyoukindofholdittheretomakesurepeopleknowthat.Rightanddownisno.Narrator:Merleisagentlemanwhosustainedabrainstemstrokewithlockedinsyndrome.Initiallyhewasonlyabletocommunicatebyeyemovement.Hemovedhiseyesupforyesanddownforno.SF:Ok,sowehaveDsofarforyourwife’sname.AndIcantellrealclearlythatyouarelookingatrowthree.Narrator:Hewasabletospellmessagesbyusinganeyelinkingtechnique.SF:YouarelookingatrowoneandletterO,good.Soyouarelookingatrow2,Merle?Slide37DB:Okinthevideoyou’veseenJohnusetheAccuPoint.He’sveryaccuratewithitandeffectivewithit.Slide38Infactwehavehimparticipateinthedevelopmentorchangesofthattechnologyandhealsousessomeoftheotherrelateddevelopmentsthatwehave.TheAccuClickforcontrollingothersoftware,managingthemousefunctionsandsoonforothersoftwareandthenAccuKeyswhichallowshimtospellandtointerfacewithothersoftware.He’sbeenaveryactiveparticipant.Slide39


Nextwe’regoingtobegoingontoeyetrackingtechnologyandwe’regoingtodiscussthisinlightofpeoplethatwesawearlierwithALS.Youseeourcolleagueslistedthere,LauraBall,AmyNordnessandthetwoofus.Ourstrategyisthat,researchstrategythroughtheyearsisthatwefollowalargenumberofpeoplewithALS‐AmyotrophicLateralSclerosisorLouGehrig’sdisease.It’sadegenerativediseaseasyouprobablyknowandwefollowthemfromdiagnosisfranklyuntildeathataboutthreemonthintervalsandduringthattimewecollectanumberof,severalpieces,alargenumberofpiecesofinformationthathelpsusmakeclinicaldecisions.OnceagainIreferyoutothegreenbookAugmentativeCommunicationStrategiesforAdultswithAcuteandChronicMedicalConditionsandthere’sanentirechapterintherethatlaysoutthephasesofinterventionthatwe’llbetalkingabouttoday.We’dliketointroduceyoutoOlinda.Actuallyshehasbeensomeonethatyou’veworkedwithsowhydon’tyou;youknowherwell,whydon’tyouintroduceher.Slide40SF:WellOlinda,she’sasixty‐yearoldwoman.Sheresidesataskillednursingfacilityhere.She’shadALSforanumberofyears.OneofherveryearlyfirstsystemswasascanningAACsystem.AboutthetimethatIsawhershehadjustreceivedaneweyetrackingAACsystemandshehadgoneanumberofyearswithouttheabilitytoaccessacomputersystemjustduetoherdifficultyandbeingabletoaccessascanningdevicewithaswitch.She’scurrentlyhasbeenusinghereyetrackingsystemforabouttwoyears.DB:Howlonghasshebeenunabletospeak?SF:Quiteanumberofyears,atleastoverfivemaybealmostuptotenyears.DB:OksosheobviouslyissomeonewhohadspinalALStobeginwiththatwasherpresentingsymptomsandthenintimeitreachedupintoherbrainstemandaffectedherspeechandthat’swhysheprobablyhaslivedaslongasshehaswithALS.WehaveavideoofOlindathatwe’regoingtoshow,we’regoingtochangeitalittlebit.We’regoingtoshowyouthevideofirstsoyougetalittlefeelingofwhatit’sliketoseesomeonewhouseseyegazetocommunicate.Sowhydon’twegoaheadandrollthatvideonow.Slide41VIDEOTRANSCRIPTOlindaviaAACsystem:Thisisaneyegazecomputer.Iuseittocommunicatewithfamilyandfriends.Ialsouseittoreadbooksandmybible.SF:Sothereyouturnedonyourcalllight,right?


Olinda:Ilovetheeyegaze.Itallowsmetokeepincontactwithmychildren.Slide42DB:Asyoucanseefromthisvideosheuseseyegaze,sheusesitaccurately,usesiteffectively,andsheusesittosupportwhatcommunicationfunctions?SF:Shedoesuseittosupportsomeface‐to‐facecommunicationwithherstaff,butshe’sprimarilyusingittosupportwrittencommunication.Careprovidersandfamilyatadistanceviaemail.DB:OkSF:Sheusesitextensively.InfactwhensheishavingsomedifficultieswithhersystemIgetanemailfromher.Shealsosupportsmedicalneedsthatshemighthavewithit.Soit’sbeenarealefficientmethodforherandreallyopenedupalotofopportunitiesthatshedidn’thavebefore.DB:Soshelivesinalong‐termcarefacilityandthenshemanageshermedical,shemanagesyou,sheconnectswithherfamily.SF:RightDB:Thisisapattern,we’llshowsomedatathatwedidonfollow‐up,andwhatyou’llseeisthatthisisapatternthatwe’reseeing.Thatcommunicationhasbecomemorethanface‐to‐face.Slide43Let’stalkalittlebitaboutAACdecision‐makinginALSandthechapterinthegreenbookherewaswrittenbyLauraBall,myself,andthenLisaBardach.Inphaseonetherearereallyseveral,threedistinctphasesthatwethinkabouthere.InphaseonethepeoplearegenerallyjusthavelearnedthattheyarediagnosedwithALS.Theyarestillspeakingandourtaskistohelpthemmonitortheirspeechperformanceandtodowhatweneedtodotohelpmaketheirnaturalspeecheffectiveforthetimethattheycanstillspeak.Ofcourseweneedtoworkwiththemtoeducatethemandthekeydecisionmakersintheirfamiliesaboutthetimingofmakingdecisionsaboutcommunicationaswellasotherareasoftheirlivesobviously.Sowhatwedohere,weworryaboutenergyconservation.Inotherwordsifyou’regoingtogotoabigpartytonightwhydon’tyoutakeitalittleeasyfortherestofthedayintermsofyourtalking.Theotheriswekindofteachthemhowtomanageenvironmentalissuestoosothattheirspeechismoreeffective.Irememberawomanwhoreallyher,wouldgotochurch,herreligiousfamilywasreallyimportanttoherbuthadgreatdealoftroubletalkingoutintheareawhereeveryoneelsewastalkingbeforeandafterservicesandsoshemanagedtoreserveabitofaroomofftothesidewhereshewouldkindofgointhereandpeoplewouldcomeandvisitherinaquiet


place.Weusevoiceamplificationforsomepeople.Justapartofavoiceamplifier,youmountthemikebesidetheirmouth,maybeputthespeakerintheirpocketandthathelpsmanagegroupsormanagecommunicationinanoisysituation.Thenwegoonandwemonitorveryregularlytheirspeakingrate.Wefindthatspeakingrateissimpletomeasureanditalsoisaveryeffectivepredictorofwhenthey’regoingtoexperiencedecreasesinspeechintelligibilitythatisgoingtomaketheircommunicationwithothersdifficult.Slide44DB:Thisisabitofacomplicatedslideherebutwhatwehaveonthevertical,ontheleftsideistheirpercentageofspeechintelligibilityrepresented.Inthebottomwehavespeakingrate.Weusedthesentenceintelligibilityfromthespeechintelligibilitysoftware,andthereferenceforthatwillbeprovidedlateron,tomeasurespeakingrateandwhatwefindthereisthattheaveragespeakingrateonthattaskforthetypicaladultspeakerwhenyou’rereadingthosesentencesisabout190‐200wordsaminute.Whatwedoiswesimply,whentheycomeinfortheirmedicalvisitattheALSclinic,wehavethemreadthoseitemsandthenwhathappensiswecanmeasurethespeakingraterightastheirdoingitsowecansayoktodayyou’respeakingratewas180.ThingslookgoodIthinkthatyou’regoingtobedoingfineforawhile.Thenthenexttimetheycomeinoratimeortwolaterwemaymeasureitandsayyouknowyou’redownto160now,yetyou’restilldoingwellalthoughwe’rebeginningtosee.Whatwe’redoingisgettingthemreadytomakesomedecisions.Alotoftimeswemakemedicaldecisionsafterwehaveseveresymptomsyouknow.Wehavethefeverandthenwegotothedoctor.Thisiscommonforallofusandinthesepeopletheyhavetomakethedecisionwellinadvanceoflosingtheirspeechintelligibilitysotheyhaveenoughtimetocompleteanassessment,doatrial,andthenreceivetheequipment,haveitpurchased,andfinallylearnhowtooperateit.Gettingbacktotheslide,whatyou’llseeisthatwhenpeoplearespeakingontherighthandsideofthegraphatabout190‐200wordsaminutetheirspeechintelligibilityisover90%.Thenastheyslowdownto180,160,150theirspeakingratestaysatover90%.Thenoncetheygetintheneighborhoodofabout130wordsaminuteweseethefirstpeoplekindofstarttofallbelowthe90%intelligibility.Oncetheygetpast120wordsaminutethenwestarttoseeanumberofpeoplefallingout.Whatwedoiswekindofhavearuleofthumbwhenpeople,wetellpeoplewhenyougetdownto125or120wordsperminutewe’regoingtorecommendanAACassessment,andwefindthatpreparesthemforit.Iftheyhavequestionsalongthewayweintroducethemtoequipmentiftheyaskthat.Iftheydon’twesaywhenthattimecomeswecome,andwefindthatwayofpreparingthemisquiteeffective.SpeakingratecanbemeasuredoverthephonewhenyouliveinthenorthernpartofthecountrywhereyouhavewinterstormsandwhenyouhaveALSandtravelisdifficultandyoucan’tmakeittotheclinic,wecanhavethemreadthesentencestousoverthephoneandwecanmeasurethespeakingrate.Sowecanmonitoritandsayokwhenyouarefeelingbetterorwhentheweatherisbetteryouneedtocomeinandhaveanassessment.


Slide45DB:ThisisanotherbitofacomplicatedslidebutitcontainsanimportantkindofmessageandthatisthatonthepreviousslideyousawthattheredsquareswereforspinalALS,thebluewereforbulbarorbrainstemALS,andthentheblackwereforthosethatweremixedinsymptoms.Whatweseehereiswhatisquitetypicalandthatisontheverticalyouhaveintelligibilityofspeechandonthehorizontalonthebottomthereyouhavemonthspostdiagnosis.WhatweseeisthatthepeoplewithbulbarALSorbrainstemALSlosetheirabilitytoproduceintelligiblespeechmuchearlierinthecourseofthediseasethanthepeopleinredwhoarethepeoplewithspinalALS.Soweseethatthebulbarindividualsareshowingadecreaseinintelligibilitywithinthefirstyearorevenearlierthanthatwhereyouseethespinalpeoplewillgoonforquiteanumberofmonthsmaybeuptotwoyearsorpastthatbeforeweseethemintelligibility.Sowhatwefindhoweveristhatspeakingrategoingbacktothatparticularslide,speakingrateisagoodpredictornomatterwhatandthat’sreallyeffective.Sothat’swhywemakethatdecision.Andthatendsphaseone.Soduringphaseone,wehelpthemmaintainoptimalnaturalspeech.Wedon’tdospeechinterventioninthetypicalwaybecausewetendnottogivethemexercisesorthingslikethatforspeechjustliketherestoftheirbodysothatisn’trecommendedratherwepreparethem.Slide46DB:Inphasetwoit’saformalassessmentnowyoudoalotofformalassessmentsforourgroup.Youwanttotalkalittleaboutwhataformalassessmentlookslike?SF:Yes,aformalassessmentandusuallytheycometoyouanindividualwithALSwillcometoyoupreparedforwhatthey’regoingtoseeintermsoftheformalassessment.Occasionallyifthey’realatereferralandwhoevertheywereworkingwithwasn’tawareofkindoftherateguidelines,theycometoyoualittlebitlateinthegameit’sabitsurprising,buttheycometoyoupreparedandyoustartshowingthemsomedifferentkindsoftechnologies.TypicallytheassessmentsthatIdoweworkwithtrialingavarietyofdifferenttechnologiesandreallyunderstandingtheindividual’scommunicationneedsandwhattypesofcommunicationthatweneedtobeablesupportwithtechnologythatwe’regoingtohavethemtrial.DB:Nowobviouslyphysicalissuesareimportant.Yettherearesomeotherissuesthatfigureintothis.Forexamplewhataboutcognitive,iscognitiveanissuewiththesepeopleorisitallmotor?SF:Wellthereisasubsetofindividualsthatdohavewhat’scalledafrontotemporaldementia,andsometimesthoseindividualscanbedifficulttopointoutearly.Sometimesweseeitfirststartingtomanifestitselfintermsoftheirdecisionmakingsosometimesthisisasubsetofindividualstodelaysomeofthecrucialdecisions


suchaswhetherthey’regoingtodoventilation,thefeedingtube.Sometimesotherthingssuchaswhethertheywanttohaveawheelchairassessment.Thingsjustreallyseemtobedelayedandalsosomewhatalmostseemkindofapathetictowhat’sgoingonaroundthemandtheirdecliningconditiondon’tseemtobeablemakeadecisiononewayortheotherintermsofthetypeoftechnologyorroutetheywanttogotosupporttheircommunication.DB:Youmentionedacoupleofotherthings.Youmentionedfeedingtubes.That’skindofadifferentdiscussionprobablymakesthe,whatI’veseenyoudoisyougetafeedingtubeanditmakesfeedingmucheasier,muchlessrisky,andmuchfaster.AgoodfriendofmineTomhadALSandthefeedingtubeallowedhimtoreceivehisnutritionquicklysohecouldgooutwiththeresttoaballgame.Wherehewouldhavehadtospendanhourandahalfeatingeverymealthatwouldhavetakenupalotofhistime.Interestinglyenoughithadaneffectoncommunicationbecauseifhewentouttotheballgamehewouldhavetotalktopeople.SF:RightDB:Wefoundthatwhileitdidn’tnecessarilyextendhislifeitmadeitaloteasierandhecommunicatedmore.Whataboutventilation?SF:VentilationissomethingthatatfirstassessmentIusuallytalktoindividualsaboutandseewhatkindofdecisionstheymadewithregardstothat.DB:Andmaybeweshouldpointoutrightawaythattherearekindoftwokindsofventilationhere.There’sthekindofventilation,theCPAPtypeventilationthattheymaybewhereamasklikethisthatdeliversconcentratedoxygentothemandthat’sprettycommon.SF:Andthat’softenintheovernight.DB:Andthat’softenintheovernight,maybeintimeduringtheday.Whileitmakestheirlifeeasierandsoonitisn’tthebiglifeextenderthatinvasiveventilation.What’sinvasiveventilation?SF:Ininvasiveventilationtheseindividualstypicallyhaveatrachandtheyareactuallyconnectedtoaventilatorandthatsuppliesthebreathforthemsotheycanliveforanextendedperiodoftimeonaventilator.SomeindividualsthatI’veworkedwithherehaveliveduptofifteenyearspotentiallywithaventilator.It’simportanttoknowthis,whatdecisionthey’vemaderightupfront,becauseitdoesinfluencethekindsoftechnologythatyoulookat.Individualswhochoosetogotherouteoftheinvasiveventilationmightlivetoapointtowherethey’reessentiallylockedintotheirbodies.Soyouwanttomakesurethetechnologiesthatyou’relookingatareadaptable.Theyaccommodatetheperson’sdecliningphysicalconditionovertime.


DB:OkandonceagainIpointoutfifteenyears,yeswedohavethathappenbutwedoalsoseeitevenanextensionoftwoyears,fouryears,fiveyears,sevenyearsisreallyimportant.Slide47DB:Goingonwiththeformalassessment,anotherpartoftheformalassessmentwhilewe’remakingdecisionsaboutthehigh‐techAACdevice.Onceagainthesearemulti‐modalcommunicatorsandsotheywillneedlow‐techoptionsfortimeswhenthey’reinbediftheirsystemsaresetupforbed,whenthey’reintherestroomthesekindsofthings.Soonceagainpartoftheformalassessmentistoprovidethemwitharangeofcommunicationoptionstomeettheirneedsthatisacceptableandvaluabletotheirfamilymembersandcaregivers.ThethirdphaseistofinalizeAACassessmentsdoequipmenttrials,preparepaperwork,makefundingrequests,gettheprescriptionsthatarenecessarydependingonyourfundingrequirements,Medicare,Medicaid,insurancefundingrequirementandsoon.ThenfinalizetheAACoptionsthatareused,therangeofAACoptionsthatareused.Slide48DB:Kindofswitchingnowalittlebitwhatwedidiswefollowedthefirstfifteenpeoplethatourgrouphaddonewitheyetracking.OnceagainthereareavarietyofeyetrackingsystemsoutthereweacknowledgethatthisisonlywiththeonewhichistheERICAsystemfromEyeResponseanditwastheirfirstgenerationinthesensethatitwasthesinglecamerasystemandnowmostofthecompanieshavethedualcamerasystem.We’dliketobesurethatpeopleareawarethetime,whichthisoccurred.Slide49TheeyegazewasatthistimewasjustbeginningtoberegularlyusedinALSbecausethenewtechnologywasthere,andwewereimpressedwiththepossibilitiesthatithadforsomeofthesepeoplewithlimitedmovementoressentiallynomovementorpeoplewhowerelosingmovement.Wewantedtobecarefulaboutit.Thisisn’tgoingto,we’renotgoingtospendalotoftimetalkingaboutthisbuttheeyegazetrackstheeyemovementbymonitoringthereflectionintheeyeandusingcamerasandcomputersthentoconvertthisinformationtomousetracking.Choicesaremadeusingdwellmeaningifthecursor,mousecursorstaysonalocationforasetperiodoftime,whichcanbeadjusted,thenitwillacceptthatletterorthatwordorthatphraseorwhatever.Slide50


DB:Ifyoulookattheliteratureandthepresentationsoneyetracking,thereareavarietyofconcernsthatwereinitiallypresented.Oneofthemwasphysicalability,headmovement,ventilators,dryeyes,andsoon.Thosewereissuesofconcern.Anotheronewastheenvironment,thelightingintheenvironment,thehome,thenursingfacility,wherevertheindividualwasbeingoutsideandsoon.Anotherissuethatwasputforwardwaspositioning.Inotherwordswereyoualwaysatatablewhenyoucommunicated,couldyoucommunicateatatableandinbed,allthesekindsofthings.Anotherissuewasglasses.Thereflectionthatcamefromglassesorcontactlensoralltheseissueswasthereandthenofcoursethegenerallightinginthearea.Therewereagroupofissuesthatwewantedtopursuetotrytounderstandwiththesefifteenpeople.Slide51DB:Weselectedfifteenpeoplewhochoseeyetrackingaftertheirassessmentandsoinotherwordstheymadethedecisionthattheywantedtogowitheyetrackingandwethenaskedthemiftheywouldbewillingtoparticipateinthisfollowalongstudyofours.Thesewerefifteenconsecutivepeoplewhohadselectedeyetracking.Weweren’tgoingandpickingdifferentpeopleatdifferenttimesordifferentfacilitiesratherthesewerefifteenconsecutiveindividuals.Youseethereontheslidetenmenfivewomen,theage52yearsalthoughitwentfrom39to71yearssowehadquiteanagerangeinthatbunch.Fortypercentofthemwereoninvasiveventilationandsofollowinguponourpreviousdiscussionthereandsowefoundthattherewerepeoplewithdifferentkindsofmusclecapabilitiesorstrengthcapabilities.Fiftythreepercentofthemhavingasignificantspasticcomponenttotheirmovementpatternsandfortysevenpercentwereflaccidorweak.Slide52DB:Eachreceivedinstructionuntiltheycouldoperatethedevicetocommunicate.Oncetheyreceivedit,theyreceivedtrouble‐shootingsupportasnecessary.Youdidsomeofthis,whatwasthenatureofthat?Thatwecontactyousayingwe’rehavingalittlebitoftrouble?SF:Ittypicallyresultedinlightingtypesofissuesthatwehadtotrouble‐shoot.Theywereinterferingwiththecalibrationortheeffectiveuseofthesystem.Insomecasesitwasanindividualwhoworeglassesandwekeptgettingglareontheglassesandjustdoingthosekindsofadjustments.Thoseweresortoftheenvironmentalandthepositioningandthelightingwerethetypicaltrouble‐shootingsessions.Slide53


DB:Andtheresearchstrategywasreallyasurveystrategyinwhichweinterviewedthepeoplewhousedthetechnology,familymembers,whoeverwasthereandcouldgiveusinsightaboutit.Slide54DB:Attheresultofthisfourteenofthembecamesuccessfuleyegazeusers.OnediscontinuedbecausetheyhadtroublecontrollingtheireyelidsandthatsometimeshappenwheretheweaknessthatapersonexperiencesmeansthattheyhavetroublekeepingtheireyelidsopenandthisindividualasIrecalltheeyelidswouldkindofdroopandtheywouldobscuretheeyeandthenthetrackingwouldbeinterrupted.Itjustgottobealittletoomuchofahasslesotheydiscontinueduse.Forthosefourteenthatweresuccessfulwewereabletomanagedifferentlightingconditions.Excusemeherejustasecond.Tenofthemuseddimmedlightstosomeextentandfouroftheswitchedtofluorescentbulbsathome.Thatworkedbetterthanthetypicalfloorlampinthebackgroundthatseemedtogetintheway.SF:RightDB:Irememberonepersonwouldcallyouandyouwouldsaywhydon’tyoumovethefloorlampoverthephoneandthatoftensolvedtheproblem.Threeonlyusedoverheadlightingandgotridofthefloorlampsthatwereateyelevelaroundtheroom.SF:RightSlide55DB:Howeverfiftythreepercentoftheseindividualswerewearingprescriptionglasses.Threeofthemhadreflectivetypelensesandwithworkwewereabletoworkaroundthosewouldn’tyousay?SF:YesDB:Idon’tthinktherewasanyonethatwesaidnoyoucan’t.Wellfourteenoutofthefifteenweresuccessfulandtheonewhowasn’twasadifferentreason.SF:Yes,right.Slide56DB:Itwaskindofinterestingwhenwewenttothemandsaidwhydidyouchoosethistechnologyoverotherkindsoftechnology.Fiftyeightpercentofthemsaidtheydidn’thavemuchchoicebecauseIonlyhadeyegazemovementavailabletomeso


that’swhyIdidthat.TwentysevenpercentorafullquarterofthemsaidIwanttobesetupsothatifinfactIdeterioratefurtherwhichyouexpecttodo,andifinfactmaybeIdecidetogoonventilation,I’vegotasystemthatIcanmanageandsotheywerewantingtheflexibility,themultipleaccessoptions.Thirteenpercentchoseitbecausetheywereunabletoscan.Theyjustcouldn’tlearnhowtoscanefficientlyandsotheydid.SevenjustsaidthisiswhatIwantanddidn’tprovidemuchmoreofanexplanation.Thereyouseealittlebitofthefundingpatternthatwasavailablefortheseindividuals.Slide57DB:ThisIthinkisquiteinteresting.Thequestionalwayscomesuphowmuchinstructiondoweneedtodoandwhatwefoundacrossallpeoplewasanaverageoffiveandahalfhours,butitrangedfromtwohours.Infactmostofthemthelargestgroup,fiveofthem,manageditwithtwohoursofinstruction.Slide58DB:Reallytheonethatreallyraisedthesenumberswasthepersonwhohadtwentyhoursofinstructionandthatwasauniqueindividualandyouwereinvolvedwiththatperson.SF:Itwastheindividualwitheyeapraxia.DB:Yes,wecallediteyeapraxiaandthesymptomofitwasthatwhenweevaluatedthepersontheywereabletoprettyaccuratelypointtheireyestothings.Whenwepointedtothe“a”theycouldlookatthe“a”andallthatbutwhentheystartedtocommunicatewhathappened?SF:Theywereunabletospell.Weweretroubledbythatsotheywouldbestuckinapatternnearacoupleofletters.DB:Aneyepattern,yes.SF:Goingbackandforthbetweenletters,wewouldstarttocuethemmoreandtheywouldgettotherightletterandthroughthelow‐techmeanswesawthattheycouldspell.Theindividualcouldbutitseemedlikewhenwehadthemgeneratecommunicationthemselvesusingspellingandeyegaze,that’swherethebreakdownwasoccurring.DB:Sotheproblemwasn’tinspelling,theproblemwaswhentheyhadamessageandtheytriedtodothemotor‐planningnecessarytocommunicatethatmessagethingskindoffellapart.SF:Yes


DB:Wedidhavetheopportunitytoputtheminanon‐goinginstructionalprogramanditresolved,butittookquiteanumberofhoursofinstruction.SF:Earlyonwiththisindividual,wereliedabitmoreonfullmessagessothisindividualcouldstillsupporttheircommunicationwhilethey’recontinuingtoworkthroughtheproblemstheywerehavingwiththeeyeapraxiaandspelling.DB:Soanyway,actuallyIwassurprisedthatthisgroupthattheydidn’trequiremoreinstructionthanwhattheydidactually.Slide59DB:Weseeonthisnextslidetroubleshootingissues.IthinkwekindofalludedtothatalreadysoIwon’tspendmoretimeonthatrightnow.Onethingwereallywantedtotalkaboutwasusepatterns.Slide60DB:WhatitdoesisitreallyrevealsIthinkachangeinpatternhowpeoplecommunicatewhentheyhavecomplexcommunicationneeds.TheyarerequiredtomeettheseneedswithAAC.Whatyoufindthereiswellover90%useitforface‐to‐faceandthereisonewhoiskindofusingityetfortheinternetkindofemailandsoonstillspeakingtosomeextentface‐to‐face.Youseetherethat40%wereactuallyusingittospeakingroups.Thisisquiteencouragingbuttheelectroniccommunication,thephone,theemailandtheInternet,whatyouseethereisover70%ofthepeopleonemail,over80%ofthepeopleontheInternet.Whatweseeisthatpeoplewerereallyinsignificantnumbersgiventheagespanweweredealingwithsaidnothisisanimportantwayformetocommunicate,andmanyofthemcommunicatedregularlywithfamilyatadistance.GettingthebenefitsoftheInternetbecausemydaughterorgranddaughtercantypeprettyquicklyandgetmessagestomeandthenIcanreturnthemessageeventhoughitdoestakemetwoorthreeorfourtimesaslongasitdoesthem.Wecertainlysawthatemerging.Slide61DB:We’dliketojustclosethiswebcastoutwithafewacknowledgments.OnceagainMerle,John,andOlindaplayedsuchanimportanton‐goingroleinourprogram.TheyarereallyAACexpertsforusandweappreciatethem.ThenwehavecolleaguesinavarietyofdifferentsettingsthatyouseelistedtherewhooperateALSclinicsandwhocollaboratewithusontheon‐goingdatacollectionthatwehave.Slides62&63


Wealsohaveagroupofreferencesonthenextslidesthatrefertothecontentthatwehavepresented.Thankyouforwatching.ReferencesCulp,D.,Beukelman,D.R.,&Fager,S.K.(2007).BrainstemImpairment.InD.R.

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Ball,L.,Fager,S.,Nordness,A.,Kersch,K.,Mohr,B.,Pattee,G.,Beukelman,D.,(Accepted).Eye‐gazeaccessofAACtechnologyforpersonswithamyotrophiclateralsclerosis.JournalMedicalSpeechLanguagePathology.

TheRehabilitationEngineeringResearchCenteronCommunicationEnhancement(AAC‐RERC)isfundedundergrant#H133E080011fromtheNationalInstituteonDisabilityandRehabilitationResearch(NIDRR)intheU.S.DepartmentofEducation'sOfficeofSpecialEducationandRehabilitativeServices(OSERS).

supporting communication of individuals with minimal...

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