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Celebrating30YearsoftheNJC:EmpoweringIndividualswithSevere

Disabilities,Families,andStakeholders

Thursday,November17,2016Session#1062

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Disclosures

• Financial:DianePaul,ASHAstaff,participatesintheNJCaspartofherjobduties

• Non-financial:AllothermembersoftheNJCreceivenocompensationforservingontheNJC.

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PurposeofToday’sPresentation

• FamiliarizeattendeeswiththeNJC– NJCrepresentativeswillshare• History• Recentproductsandactions• Webresources

– SharewaysattendeescannetworkwiththeNJCaroundpolicy,practiceandresearch

– Describeanemergingscholarshipopportunityforfuturestudentsinterestedinpeoplewithsevere

disabilities

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NJCHistory• Formedin1986byASHAandTASH• FirstguidelineswithCommunicationBillofRightsin1992

• Celebrating30th Anniversaryin2016

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NJCPurpose

• Advocateforindividualswithsignificantcommunicationsupportneedsresultingfromintellectualdisability,thatmaycoexistwithautism,sensoryand/ormotorlimitation

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NJCFocus

• Research• Policy• Practice• Education

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NJCMemberOrganizations

• AmericanAssociationonIntellectualandDevelopmentalDisabilities (AAIDD)

• AmericanOccupationalTherapyAssociation (AOTA)• AmericanPhysicalTherapyAssociation (APTA)• AmericanSpeech-Language-HearingAssociation (ASHA)• AssociationofAssistiveTechnologyActPrograms (ATAP)• CouncilforExceptionalChildren/Divisionfor

CommunicativeDisabilitiesandDeafness (CEC/DCDD)• TASH• UnitedStatesSocietyforAugmentativeandAlternative

Communication (USSAAC)

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NJCRepresentatives

• AAIDDMaryAnnRomski,PhD,CCC-SLPGeorgiaStateUniversityAtlanta,GA

• AOTABarbaraE.Chandler,PhD,OTR/L,FAOTATherapeuticServicesandDesignWinchester,VA

• JudithSchoonover,MEd,OTR/L,ATPLoudounCountyPublicSchoolsAshburn,VA

• APTALorraineSylvester,PT,PhDUniversityofOklahomaOklahomaCity,OK

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NJCRepresentatives

• APTAMariTherrien,PT,DSc,PCSPrivatePracticeTallahassee,FL

• ASHABillT.Ogletree,PhD,CCC- SLP(CommitteeChair)WesternCarolinaUniversityCullowhee,NC

• ASHAAmyS.Goldman,MA,CCC-SLPTempleUniversityPhiladelphia,PA

DianePaul,PhD,CCC-SLP,CAE(ExOfficio);ASHAStaffAmericanSpeech-Language-HearingAssociationRockville,MD

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NJCRepresentatives• ATAP

BethMineo,PhD,CCC-SLPUniversityofDelawareNewark,Delaware

• CEC/DCDDSusanBruce,PhDBostonCollegeChestnutHill,MA

• TASHKarenErickson,PhDUniversityofNorthCarolinaChapelHill,NC

Ellin Siegel,PhDUniversityofNebraska-LincolnLincoln,NE

• USSAACRoseA.Sevcik,PhDGeorgiaStateUniversityAtlanta,GA

Pastmemberscontributingto2015-16activities:KristaWilkinson;NancyBrady

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NJCGuidance

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CommunicationBillofRights

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CommunicationBillofRights

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ConferenceandEditedVolume• ResearchConferenceJune9-11,2011fundedbytheNational

InstituteonDeafnessandOtherCommunicativeDisorders(NIDCD).• Shapedbytheconference,thisinterdisciplinarybook

– includescontributionsfrommorethan30topscholarsfromdiversefields,includingpsychology,specialeducation,andspeech-languagepathology.

– investigatestheeffectivenessoftoday’scommunicationinterventions,– synthesizesevidencefromcurrentstudies,and– Identifiesurgentresearchdirectionsforthefuture.

• Chaptersgivereadersabriefsummaryofresearchstudiesonakeyinterventiontopic,insightsonresearchdesignandmeasurementchallenges,thoughtsonfutureadvances,andreal-worldclinicalandeducationalrecommendations.

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ChapterTopics

• prelinguistic communicationinterventionforyoungchildrenwithintellectualdisabilities

• challengingbehaviorandcommunicativealternatives• interventionsforchildrenwhoaredeafblind• augmentedlanguageinterventionsforchildrenwithseveredisabilities• parentsaspartnersincommunicationintervention• theroleofcultural,ethnic,andlinguisticdifferences• targetedandphenotypiccommunicationinterventionsforchildrenwithDown

syndromeorASD• issuesrelatedtoresearchstudydesign,includingsamplesize,the

effectivenessofrandomizedcontrolledtrials,andintegrationofsingle-caseandgroupdesigns

• assessmentandmeasurementofcommunicationandlanguageskills

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NextSteps

• Thisbookofferspowerfulinsightsabouttoday’scommunicationinterventions—andsetsaclearagendafortomorrow’sgroundbreakingresearch.

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• June11– 23,2014• “Peoplewithseveredisabilitiesfacecomplex

communicationissues,whicharebestmetwithintegrated,collaborativeservices.Afterattendingthisconference,you’llpossessabroadercontextforservingthisuniqueclientwhilebeingmorepreparedtobeanintegralpartofaninterprofessional circleofcare.”

• “Thisonlineconferencewillhelpyouprovideteam-basedservicesthatleadtothegreatestandmostsociallyvalidtherapeuticgainsforindividualswith

severedisabilities.”

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MoreonInterprofessionalServices

• In2014-15,theAmericanJournalonSpeechLanguagePathologycontactedtheNJCregardingitsinterestindedicatingaclinicalforumissuetothetopicofinterprofessionalpracticeandseveredisabilities

• Theissueisslatedforpublicationin2017–lookforit!!

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NJCProvider/ScholarNetwork

Purpose:TobroadenandcontinuetheworkoftheNJC

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Memberswill:• PromotetheCommunicationBillofRights• Supportdevelopmentofonlineinstructionalmodelssupportingevidencebasedpractice

• Gathersuccessstoriesfromthefield• Sharechallengesandconcerns• Contributetothedevelopmentofadataclearinghouse

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BenefitsofJoiningtheNetwork• Interactwithleadersinthefield• Impactpolicy• Helpsetprioritiesatthenationallevel• Enhanceyourprofessionalnetwork• ReceiveearlyaccesstoNJCresources• IncreasepotentialforfuturemembershipontheNJC

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JointheNJCNetworkhttp://bit.do/b8446

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E-Modules

• Supportsstakeholderswhowishtopromotecommunicationwithpeoplewithseveredisabilities

• BasedontheDynamicLearningMapsConsortiumwithsupportfromagrantfromtheUSDepartmentofEducation,OfficeofSpecialEducationProgramshttp://dlmpd.com/beginning-communicators/

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E-Modules

• Focusonpeople(allages)withIDDwithseveredisabilitiesandtheircommunicationpartners

• Newopportunitytoaccessassessmentandinterventioncontent:

ü Nonsymbolic communicatorsü Emergentsymboliccommunicatorsü Symboliccommunicatorsü Literacy

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E-Modules:Components

• Videoexamplehttps://wcu.hosted.panopto.com/Panopto/Pages/Viewer.aspx?id=8f7690ac-54a4-41f1-b44d-bad4aedadf47

• Powerpoint• Transcript

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AACMythsProject

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MythsaboutCommunicationandAdultswithSevereDisabilities

• TheNJCisspearheadinganewinitiativetoaddressmythsaboutcommunicationandadultswithseveredisabilities.

• ForadultswithIDDwhodonotspeak,theliteraturerecommendsthatinterventionsincludeAACtoimprovecommunicationandinteractionswithothers(Snell,Brady,McLean,Ogletree,Siegel,Sylvester,etal.,2010).

• SomeadultswithIDDexhibitlimitedfunctionalspeechandareoftenoverlookedascandidatesforAACinterventionsbecausetheydohavesomespeech

abilities.

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Myths(continued)

• Theperceptionisthattheyaretoooldtoimprovetheirlanguageandcommunicationskills(Cheslock,Barton-Hulsey,Romski,&Sevcik,2008).

• Intruth,manyadultswithseveredisabilitieshavebeendeniedaccesstoappropriatecommunicationsupportsandserviceslimitingthepossibilityofthedevelopmentofnewskills.

• Becauserecentresearchsupportsthatcommunicationinterventionshavebeeneffectivewiththispopulationregardlessofage,theseservicesmustbeavailableacrossthelifespan(Sevcik &Romski,2016).

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BirthofaNewTool?

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1998

Atoolguidingteamsinassessingtheirownpracticesinsupportingthosewithcomplexcommunicationneeds…

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1998

Quality Indicators

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YOURTHOUGHTS?

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McLeanYoderAwardforProfessionalExcellence(MYAPE)

Exemplifyinghighqualityprofessionalservicetoindividuals

withseveredisabilities

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MYAPE

• NamedafterDrs.JamesMcLeanandDavidYoder,preeminentresearchscientistsintheareaofcommunicationandintellectualimpairment.

• JudgedaccordingtotheNJC’spublishedqualityindicatorsspecifictocommunicationassessment,goalsetting,andprogramimplementation.

• Nextdeadline:May31,2017• Applicationavailableatwww.asha.org/njc

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WWW.ASHA.ORG/NJCNEWNJCWebsite

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TopicAreas

AccessingServices• RelationofAgetoServiceEligibility• RelationofDevelopmentalSkillstoServiceEligibility

• DecisionMakinginTerminationofServices• FundingforServices

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TopicAreasInterventionIssuesandPractices• AppliedBehaviorAnalysisandCommunicationServices• AssessmentandTeaming• AugmentativeandAlternativeCommunication• ChallengingBehaviorasCommunication• DefinitionofCommunicationandAppropriateTargets• Evidence-BasedPractice• InclusionandInteractionsWithFriendsWithoutDisabilities• InterventionWithSpecialPopulations• LiteracyinIndividualsWithSevereDisabilities• ServiceWithCulturallyDiverseIndividuals• Transitions/GeneralizationofSkill

• TypesofService

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TopicAreasRelationofAgetoServiceEligibilityServicesinBirth-to-3Increasingly,serviceprovisionoccurswellbefore2yearsofage.Forindividualswiththemostsignificantdisabilities,theneedforsometypeofcommunicationservicesisusuallyevidentbeforethechild'ssecondbirthday.Thoseinvolvedincarefortheseindividualsshouldconductacomprehensive,interdisciplinaryassessmentofthechild'sreceptiveandexpressivecommunicationskills,aswellasrelatedareasofcognitiveandsocialdevelopment,usevalidandreliableassessmentinstruments—includingthosedesignedforgeneralusewithinfantsandtoddlersorforspecificusewithchildrenwithseveredisabilities,andprovideinformationthatcanbeusedtodesignanappropriate,individualizedinterventionplanforthechildandfamily.

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TopicAreas

OnThisPage• ServicesinBirth-to-3• ServicestotheSchool-AgePopulation• ServicestoAdultsReturntotheNJCTopicList.

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TopicAreas

BottomLine: Communicationservicesshouldbestartedassoonasacommunicationdelayordisorderisdiagnosed.Aprofessionalevaluationcandetermineifachildisdevelopingappropriately.Ifnot,aninterventionprogramcanbedesignedtohelpthechilddevelopage-appropriateorfunctionalskills.

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TopicAreaResources onServicestoYoungChildren• AmericanSpeech-Language-HearingAssociation.(2004).Rolesofspeech-language

pathologistsintheneonatalintensivecareunit[Technicalreport].Availablefromwww.asha.org/policy.

• AmericanSpeech-Language-HearingAssociation.(2008).Rolesandresponsibilitiesofspeech-languagepathologistsinearlyintervention[Guidelines].Availablefromwww.asha.org/policy.

• Cress,C.J.(2002).Expandingchildren'searlyaugmentedbehaviorstosupportsymbolicdevelopment.InJ.Reichle,D.Beukelman,&J.Light(Eds.),Exemplarypracticesforbeginningcommunicators:ImplicationsforAAC (Vol.2).Baltimore,MD:Brookes.

• Romski,M.A.,&Sevcik,R.A.(1996).Breakingthespeechbarrier:Languagedevelopmentthroughaugmentedmeans.Baltimore,MD:Brookes.

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TopicAreaResources onServicestoYoungChildren• Romski,M.A.,Sevcik,R.A.,&Forrest,S.(2001).Assistivetechnologyand

augmentativecommunicationinearlychildhoodinclusion.InM.J.Guralnick (Ed.),Earlychildhoodinclusion:Focusonchange (pp.465–479).Baltimore,MD:Brookes.

• Romski,M.A.,Sevcik,R.A.,&Pate,J.L.(1988).Theestablishmentofsymboliccommunicationinapersonwithsevereretardation.JournalofSpeechandHearingDisorders,53,94–107.

• Rowland,C.,&Schweigert,P.(2000).Tangiblesymbols,tangibleoutcomes.AugmentativeandAlternativeCommunication,16,61–78.

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OtherActivitiesoftheNJC

• Presentationsatnationalconferences(ATIA,ASHA,AOTAforexample)

• Advocacy• SocialMedia• Scholarship:McLeanYoderSchiefelbuschFund

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LearnMore- JointheNetwork

Saturday,November19thNoon– 1:00PM

Room307,PhiladelphiaMarriottDowntown.