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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 1
DesigningAACinterventions&researchtoimproveoutcomesforindividualswithcomplex
communicationneeds
JaniceLight&DavidMcNaughtonPennStateUniversity
http://aac.psu.edu forhandouts
1
Iwanthertobehappy.Iwanthertoloveandtobeloved.Iwanthertobesafeandsecure.Iwanthertobeacceptedforwhosheis.Iwanthertodreambig
andknowthethrillandthesatisfactionofaccomplishmentsthatcomefromhardwork.Iwanthertohavethecouragetotryandsometimesfail.Attheendoftheday,Iwanthertoknowthatshelefttheworldalittlebitbetterthanwhenshe
startedout.
Aparenttalkingabouthergoalsforherchild,a
preschoolerwhousesAAC.
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Adjustingfocus• AreAACresearch&interventiontrulyalignedwiththegoalsofindividualswhorequireAACandtheirfamilies?
• Asresearchers&clinicians,wetendtofocusonourowndisciplinarydomains– Targetspecificmotor,sensoryperceptual,speech,language,and/orcognitiveskills• Ofteninisolatedsettings• Withoutnaturalcommunicationpartners
– Assumethatsomehowtheseinterventionswillleadtopositiveoveralloutcomes
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Weneedtore-thinkAACresearch&interventiontoimprove
outcomes.
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 2
PositiveeffectsofAAC• ThereisnoquestionthatAACpositivelyimpactsthe
communication of– YoungchildrenwithCCN(e.g.,Branson&Demchak,2009;Romski,Sevcik,Barton-Husley,&Whitmore,2015)
– IndividualswithASD(e.g.,Ganz,2015;Ganz etal.,2011;Schlosser&,2015)
– IndividualswithsevereorprofoundIDD(e.g.,Mirenda,2014;Rocheetal.,2015;Snelletal.,2010)
– Individualswithchallengingbehaviors(e.g.,Walker&Snell,2013)
– Individualswithseverechronicaphasia(e.g.,Beukelman,Hux,Dietz,McKelvey,&Weissling,2015)
– IndividualswithALS(e.g.,Ball,Beukelman,&bardach,2007;Beukelman,Fager,&Nordness,2011)
– Individualswithmotorspeechdisorders(e.g.,Hanson,Beukelman &Yorkston,2013).
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Challengestoparticipation• Despitethesegains,manyindividualswithCCNfacesubstantialchallenges– ManychildrenwithCCNarestilldeniedtheopportunitytoparticipateinappropriategeneraleducation(e.g.,NationalCenterforEducationStatistics,2013)
– Upto90%ofindividualswithCCNenteradulthoodwithoutfunctionalliteracyskills(e.g.,Foley&Wolter,2010)
– Lessthan5%ofindividualswithCCNareemployedevenpart-time(e.g.,McNaughton&Beukelman,2009;McNaughton&Bryen,2002;2007)
– 91%ofadultswithsevereIDDdonothaveaccesstoAAC&havenomeanstoparticipateinactivitiesofdailyliving(Stancliffe etal.,2010)
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Re-thinkingAACintervention&researchtoimproveoutcomes
• Buildontheindividual’sstrengths• Supporttheindividual’sparticipationinrealworldcontexts– Focusontheintegrationofskillstomaximizecommunication
• Buildpositivepsychosocialfactors• Addressenvironmentalbarriers
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Buildontheindividual’sstrengths
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 3
Buildontheindividual’sstrengths
• MostAACresearchfocusesonthedeficitsexperiencedbyindividualswithCCN– Thesestudiescloudrecognitionoftheuniquecharacteristics&strengthsoftheindividual
– PerhapsthesestudiesreflectaTypeIIIerror• Askingthewrongquestion(Mawn &Goldberg,2012).
• Focusontheindividual’sstrengths– Buildonthesestrengthstoaddresschallenges
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Anna• 3years10monthsold• autismspectrumdisorder• severechallenging
behaviors• limitedaccessto
communication– nospokenwords– <10PECSusedtorequestobjects&activities
– preliterate• interestinbooksand
magneticletters
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BuildonAnna’sstrengths
• Harnessherinterestinletters&books• Teachliteracyskills– Letter-soundcorrespondences– Phonologicalawarenessskills– Decodingskills– Sharedreading– Sightwordrecognitionskills– Readingandunderstandingbooks/othertexts– Earlywritingskills
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BuildonAnna’sstrengths
• Usedwrittenlanguageto– Supportspeechdevelopment
• Lettersasvisualsupports• Lettersoundknowledge
– Supportlanguagedevelopment• Buildmorecomplexcommunication
– Expandsemantic,syntactic,morphological,discoursedev’t
– Fostersocialinteraction• Sharedreading,texting,socialmedia
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 4
Anna:Buildonstrengths• After15months/60hoursofinstruction
– 5years2monthsold• Masteredbasicliteracyskills
– Lettersoundcorrespondences– Readssimplebooksindependently– Respondstofactualwh-questionswith>80%accuracy;learningtorespondtoinferencequestions
– Typessimplestories
• Enters Kindergarten as a reader and writer– Literacy skills exceed those of peers– Included in regular education class
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EmailfromAnna(Grade3)HiMissJanice.It’sAnna.Imissyou.Im agoodreader.Thankyouformakingmehappywithwith reading.WhereareyourJanicebooks?Ilovedreadingthem.Im inthirdgradeatgrays’woods.IwatchmyoldJanicemovies.DoyouwatchJanicemovies?Whereareyouworking?
Love,Anna
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Focusonsuccessfulparticipationinrealworldcontexts
Focusontheintegrationofskillstobuildcommunicativecompetence
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Focusonparticipationinrealworld
• TraditionallyAACinterventionshavetargeted– smallmeasurablegoals
• oftenisolatedskills– Requestsforpreferreditems
• withinrestrictedsettings
• Thesestudies&interventionsareimportantbuttheyarenotenough– Shouldnotlimitinterventiongoalstothosewhichareeasiesttomeasure
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 5
Focusontheintegrationofskillstobuildcommunicativecompetence
• Communicativecompetencerestsonthedynamicintegrationofknowledge,judgment,&skillstoattaingoals– Linguisticdomain– Operationaldomain– Socialdomain– Strategicdomain(Light,1989;Light&McNaughton,2014)
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Focusonsuccessfulparticipationinrealworldcontexts
• Communicationisnotanendgoalinandofitself– Itisatooltoallowindividualstoparticipateinsocietyandattainlifegoals• Education• Employment• Healthcare• Communityandfamilyliving
• AACintervention/researchmustalsofocusonparticipationinrealworldenvironments
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Focusonparticipationinrealworldcontexts
• Challenges– AACresearch
• Approximately40-60%ofstudiesareconductedinisolatedsettings
• Majorityofstudiesaddressinterventionsimplementedbyresearchers(notcliniciansornaturalpartners)
–ManyservicedeliverymodelsaresetupsothatAACinterventionwithindividualswithCCNoccurs• Awayfromtheirnaturalenvironments• Withoutmanyoftheirkeycommunicationpartners
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Ifwewantmoreevidence-basedpractice,weneedmorepractice-basedevidence(Green,2008).
ResearchthatinvestigatesAACinterventiontobuildparticipationin
therealworld.
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 6
FocusonparticipationinrealworldLena(O’Neill&Light,2016)
• 16yearoldwithautism• Usessomespeechto
communicate,butfulfillsveryfewcommunicationopportunities– especiallyduringindependentlivingactivities&vocationaltasks
• Highlydependentonpromptingtocompletevocationalandcommunitytasks
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Focusonparticipationintherealworld
• Goal– Toincreaseindependentparticipationincommunity&vocationalactivities• E.g.,usingpublictransportation
• workingattheprintshop
– Requiresintegrationofknowledge,judgment&skillsacrossdomains
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TaskanalysisUsingpublictransportation
1. Walktothebusstop.2. Lookattheschedule
forthetimeofthenextbus.
3. Waitforthebustoarrive.
4. Getonthebus5. Greetdriver.6. Givebuspasstodriver.
7.Walktoseat,sitdown,andwait8.Pullcordwhenstopisnext.9.Getupandwalktoexit.10.Thankthedriver.11.Exitthebus.
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AACvideoVSDapp
• AACvideoVSDapp– Initialprototypedeveloped
byInvoTek aspartofRERConAAC
– Capturevideoofdailyroutines• Viabuiltincameras&wirelessimport
– Allowpauseofvideo• CreateVSDsatthesejunctures
• Createhotspotswithspeechoutputtosupportcommunication
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 7
Interventiontoincreaseparticipationintherealworld
• ImplementationofAACvideoVSDapp– Providesintegrateddynamicvisualscheduleofroutine&VSDstosupportcommunicationwithinroutine
– Playvideoofeachstepofactivity• Videoautomaticallystopsatendofstep
• FunctionsasVSDwithhotspotsprovidingcommunicationsupportsasrequired
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20% 25% 20% 40% 40% 40%
80%
50%
70% 67%
100%
60%70%
60%
90%80%
90%78%
100%
0%
20%
40%
60%
80%
100%
120%
1 2 3 4 5 6 7 8 9 10 11
Percentofstepscompletedandcommunicationopportunitiesfulfilled– usingpublictransportation
Baseline Independently Gesturalprompts
textlabelsadded
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Buildpositivepsychosocialfactors
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Buildpositivepsychosocialfactors
• Communication&participationareimpacted– Notjustbyindividual’sskills– Butalsobypersonalpsychosocialfactors(Light,2003;Light&McNaughton,2014).
• MostAACresearch&interventionfocusesonisolatedskillsalone– Onlyaverysmallpercentageofstudieshavefocusedonthedevelopmentofpositivepsychosocialfactors
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 8
Buildpositivepsychosocialfactors• Psychosocialfactors are
criticaltosuccessfuloutcomes– Motivation– drivetocommunicate&participate
– Attitude– willingnesstodoso
– Confidence– propensitytoact
– Resilience– persistenceinthefaceofadversity(Light,2003;Light&McNaughton,2014)
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Buildpositivepsychosocialfactors
• Mentorproject(Light,McNaughton,Williams&Krezman,2007)– ProvidedtrainingformentorswhousedAACinactivelisteningandcollaborativeproblemsolvingskills
– LinkedadolescentsandyoungadultswhousedAACwithmentorswhoalsousedAAC• Accesstorolemodels• Encouragementandsocialsupport• Collaborativeproblemsolvingandgoalsetting• Accesstorelevantresources
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Topics/Problemsdiscussed
• Attitudebarriers• AACsystems• Fundingdelays• Lackofknowledgeableserviceproviders• Lowexpectations/lackofmeaningfulroles• Familystresses/supports• Challengesdevelopingfriendships/relationships
• Feelingsaboutdisability,etc.
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Attitudebarriers
“Dopeopleevertreatyoulikeyouare2yearsold?Inmyschool,someofthekidstalktomelikeIam2yearsoldandcan’thear.Itreallymakesmecrazy.Iknowtheyaretryingtobenice,butIgonutssometimes.Iam14.Not2.WhatshouldIdotohandlethis?”
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 9
Challengespromotingfriendships
• “Iknowwhatyou’regoingthrough.WhenIwasinhighschoolIwascallednamesandmadefunof.AndallIhadwasaletterboardtocommunicatewith.Soyouthinkyoudon’thaveanyfriendsinschool…Doyouaskotherstudentsquestionsaboutthemselves,aboutthehomeworkassignments,andschoolactivities??Sometimesyouneedtofocusonthemfirstbeforetheywillfocusonyou.”
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Roleofmentors
• Fallinginlove,startinganewschool,startinganewjob,changingcommunitiesorhomes,masteringaskill,learninganewpieceofassistivetechnology- allareeasierandmorefuniftheexperiencecanbesharedwithandguidedbysomeonewhohas“beenthere”
• MichaelWilliams
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Addressenvironmentalbarriers
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Addressenvironmentalfactors
• ItiscriticaltofocusontheindividualwithCCN– Skills– Psychosocialfactors
• Butitisnotsufficienttodoso• Alsocriticaltoaddressenvironmentalbarriers– Policy&practicebarriers– Attitudebarriers– Knowledge&skillsbarriers
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 10
Addressenvironmentalbarriers• Majorityofintervention
studiesdonotaddressenvironmentalbarriers– Onlyatinypercentage
addresspolicy,practice,orattitudinalbarriers
– Only15%taughtpartnersstrategiestosupportcommunication
• Itiscriticaltoaddressenvironmentalbarriers sothatindividualswhouseAAChaveopportunities tocommunicate&participate.
Focusofinterventioninstudiespublishedbetween1985-2015(McNaughton&Light,2015)
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Impactofpartnerinstruction
• Recentmeta-analysis(Kent-Walsh,Murza,Malani,&Binger,2015)– Partnerslearnedtomodifytheirinteractionsstrategiessuccessfullyinashortamountoftime• Increasedopportunitiesforcommunication
– ChangesinpartnerstrategieshadpositiveeffectsoncommunicationofindividualswhouseAAC
• Mostresearchtodatefocusedoneffects– Oninstructionofeducators&parentsofchildren– Inalimitedrangeofcontexts(e.g.,bookreading)
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AddressingenvironmentalbarriersInterventiontofosterpeerinteractions• Study(Therrien &Light,2016)
– Multiplebaselineacrosspartners• 2childrenwithCCN• Eachwith3peerswithoutdisabilities
• Intervention– ProvisionofiPadwithAACapp(GoTalk Now)
• Programmedwithmotivatingbookswithhotspotsofmeaningful&funvocabulary
• FunctionedasasharedcontexttosupportinteractionbetweenpreschoolerswhousedAACandpeerswithoutdisabilities
– Instructionin“sharing”forbothparticipants• Waitforpartner• Takeaturn
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Interventiontofosterpeerinteractions
• Results– 2preschoolerswhousedAACshowedgainsinsymboliccommunicativeturnsafterintervention
– Gainsobservedacrossdifferentpeerswithoutdisabilities.• Participant1demonstratedaveragegainsof30-46symboliccommunicativeturnsper10-minutesession
• Participant2hadaveragegainsof11-24turns– Participant1maintainedgainsafterthreeweekswithouttraining• Participant2movedtonewschool;nomaintenancedata
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ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 11
JustprovidingAACsystemsisnotenough!
AddressenvironmentalbarriersEnsureindividualswhorequireAAChaveopportunities tocommunicate
andparticipate
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Conclusions• AACfieldhascomealongwayoverthepast30years
– ResearchhasestablishedthepositiveeffectsofAAConcommunication
– Evidence-basedAACinterventionhassignificantlyenhancedcommunicationforindividualswithCCNandtheirfamilies
• Nowthechallengeistoextendourwork– ResearchthatfocusesonenhancingparticipationandrealworldoutcomesforindividualswhorequireAAC
• AACinterventionthatensuresthepossiblebecomestheprobableinthedailylivesofallindividualswithCCN
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Re-thinkingAACintervention&research
• Weneedtore-thinkAACintervention&researchtoimproveoutcomes– Buildontheindividual’sstrengths– Supporttheindividual’sparticipationinrealworldcontexts• Focusontheintegrationofskillstomaximizecommunicativecompetence
– Buildpositivepsychosocialfactors– Addressenvironmentalbarrierstoensureopportunity
43
Iwanthertobehappy.Iwanthertoloveandtobeloved.Iwanthertobesafeandsecure.Iwanthertobeacceptedforwhosheis.Iwanthertodreambig
andknowthethrillandthesatisfactionofaccomplishmentsthatcomefromhardwork.Iwanthertohavethecouragetotryandsometimesfail.Attheendoftheday,Iwanthertoknowthatshelefttheworldalittlebitbetterthanwhenshe
startedout.
Aparenttalkingabouthergoalsforherchild,a
preschoolerwhousesAAC.
44
ISAAC2016 8/7/16
RERC-AAC.ORG,AAC.PSU.EDU 12
ForfurtherinformationForhandoutsforthissession,visithttp://aac.psu.edu
ForfreeaccesstoLight&McNaughton(2015),visithttp://rerc-aac.org
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Acknowledgements• Weareespeciallygratefultotheindividualswhoparticipated
inthisproject.Thankyouforallowingustobeapartofyourlives.
• ThecontentsofthispresentationweredevelopedunderagrantfromtheNationalInstituteonDisability,IndependentLiving,andRehabilitationResearch(NIDILRRgrantnumber#90RE5017)totheRehabilitationEngineeringResearchCenteronAugmentativeandAlternativeCommunication(RERConAAC).http://rerc-aac.org
• NIDILRRisaCenterwithintheAdministrationforCommunityLiving(ACL),DepartmentofHealthandHumanServices(HHS).ThecontentsofthispresentationdonotnecessarilyrepresentthepolicyofNIDILRR,ACL,HHS,andyoushouldnotassumeendorsementbytheFederalGovernment.
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