ICD11and d I Intellectual t ll t lDi Disability bilit

RuthLuckasson Luckasson,JD JD,FAAIDD DistinguishedProfessor TheUniversityofNewMexico

PurposeofthisPresentation
DescribethefunctionoftheWorldHealth OrganizationsInternationalClassificationof Diseases(WHOICD) Explainwhyitisimportant Review R i the h contributions ib i of fAAIDDtothe h processofICD11 Anticipatenextsteps

ReviewofMajorFunctionsRelevantin Terminology l and dClassification l f

Naming Defining Diagnosing Classifying Pl Planning i S Supports t

Whatistheessentialquestionineachfunction, andwhatisatstake?
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Function Naming g

Defining

Essentialquestions Howwillthestatusbe known? Whatwordswillattachtothe individualandpeopleclose? Whatgroupwillbeinthe categoryforprotectionsand benefits,andwhatgroupwill b be out tof fthe th category? t ?

Diagnosing

Classifying

Whatassessmentstepsare requiredforidentifying individuals? Howisthetotalgroupthat wasdefinedasinthe categorynowsubdivided basedoncriteriathatare relevanttoaspecified purposeofsubdividing?

Planning supports

Whatapproachdoesone taketoenhancinghuman functioning?

Whatisatstake? Personalidentity y Stigmaorvaluationforindividuals andtheirfamilies Separationorinclusion Eligibility(operationaldefinition) Governmentandeconomic commitment Di ti Distinguishing i hi th theoperational ti l definitionfromtheconstitutive definition Fairnessandaccuracy Individualizeddecisionmaking Efficiency Improvedunderstandingofthe person Rationallylinkingsubgroup characteristicstoimportantactions, (e.g.,research,funding,supports planning,outcomesevaluation,and societalpriorities) Fairness Equitabledistributionofresources Thefunctioningofacitizenand family Responsibilitiesofasocietyto enhancethepersonalwellbeingof itscitizenry Addressingpersonalgoalsand assessingsupportneeds Deliberatedalignmentofneeds, resources,anddesiredoutcomes

Source:Luckasson&Schalock(2013),p.95.

DescriptionofWHOs WHO sICD

TheWorldHealthOrganizationwasestablishedin1948 intheUnitedNations ICDisaclassificationofallhealthconditions(more than10,000diseaseanddisordercodes) Revisedapproximatelyevery10years;thelastwasICD 10(1992) ICDi ispart tof fth theWHOf family il of fclassifications, l ifi ti includingICFandICHI Purposes: p worldwideleadership pinhealth; ;consensual, , meaningfulandusefulframeworkwhichgovernments, providersandconsumerscanuseasacommon g g ( (http://www.who.int/classifications/en/) p ) language
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TheProcessforDevelopmentofICD11
ExpectedpublicationofICD11in2015 ComplexprocessoverseenbyWHODept.of MentalHealthandSubstanceAbuse MentalRetardation(ICD10)isincluded withintheclassificationofMentaland BehavioralDisorders AnappointedinternationalWorkingGroupof expertsinIDpresentedproposedchangesto WHOSecretariat
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Process,cont.
WHOSecretariatpreparesaversionforpublic reviewandcomment WHOencouragesconsultationwithandinput fromstakeholdersfromthe193member countries(thisiswhereAAIDDmadeits commentsandrecommendationsinJan.2013) Revisions Clinicalfieldtesting FinalizationforMay2015
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WhyisthisImportant?
Therearecriticaladvantagestohavingaunified, unified aligned,consistenteffortregardingthename, definition&diagnosis diagnosis,andclassificationsystem globally Scientific Psychosocial Policy

AAIDDs AAIDD sProcess

AAIDDPresidentTasse convenedasmalland diversegroupofexpertsinJanuary2012for1 day ymeeting g Preparedrecommendationsonnaming,defining andclassifying,andfieldtesting PreparedsuggestedrevisionsoftheContent FormsforMentalandBehavioralDisorders Disorders previouslysubmittedbytheICDWorkingGroup Submitted, Submitted asastakeholder, stakeholder thematerialtoWHO
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ContentofAAIDD AAIDDs sRecommendations

DisordersofID( (notIntellectualDevelopmental p Disorders) ) conditioncharacterizedbysignificantlimitationsin intellectualfunctioningandadaptivebehavior,originating duringthedevelopmentalperiod. Diagnosticguidelines:significantlimitationsinintellectual functioning,significantlimitationsinadaptivebehavior,and onsetduringthedevelopmentalperiod.

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AAIDDRecommendations,cont.
RecommendedConstituent ConstituentCategories Categories (levels):
DisorderofID, ,Marked DisorderofID,Extensive DisorderofID,Pervasive DisorderofID,Other Recommendation:Determinecategories(levels) basedonfunctioning,morethanIQ
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AAIDDRecommendations,cont.
Fieldtesting:AAIDDofferedtoparticipatein fieldtesting,especiallygiventhatAAIDDhas membersacrossNorthAmericaandmore than50countries

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CurrentStatusofICD11regardingID
DevelopmentofICD11isunderway:The 11thversion,ICD11,isnowbeingprepared. Thedevelopmentphasewillcontinuefor threeyearsandICD11isexpectedtobe finalizedin2015 2015.

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ComparisonofRecommended ChangestoICD11andAAIDDsT&C 11th Edition(2010) ( )

AAIDD
Name Definition/ Diagnosis
IntellectualDisability(ID) characterizedbysignificant limitations a o sbo bothinintellectual e ec ua functioningandinadaptive behaviorasexpressedin conceptual,social,andpractical adaptiveskills.Thisdisability originates i i t before b f age18 18. thatfulfillsan importantpurpose, e.g.intensityofneededsupports (dependsonjurisdiction: intermittent,limited,extensive, pervasive)

Recommended toICD11
DisordersofIntellectualDisability (Disorders ofID) characterizedbysignificantlimitations inintellectual e ec ua functioning u c o g a and dadaptive adap e behavior,originatingduringthe developmentalperiod

2015 ICD11
? ?

Classification Selectamultidimensionalsystem

DisorderofID,Marked DisorderofID,Extensive DisorderofID,Pervasive DisorderofID, ID Other (Basedonfunctioning)

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Conclusion
Theseissuesareimportant thereisagreat dealatstake. GivenAAIDDs AAIDD shistoricalcontributionsin terminologyandclassification(11editions!) andexpertresources,thecommentsofAAIDD arerespectedandwehavemuchtooffer. Vigilanceandattentiongloballyarerequired. http://www.who.int/classifications/icd/revisio n/en/
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Resources
April2013SpecialIssueofIntellectualand DevelopmentalDisabilities,51(2). http://www.aaidd.org/ http://www aaidd org/ http://www.who.int/classifications/icd/factsh eet/en/index.html / /i d h l http://www.who.int/classifications/icd/revisio n/en/

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Resources,cont.
Schalock,R.L.,Luckasson,R.,Bradley,V.,Buntinx,W.,Lachapelle,Y., Shogren K., Shogren, K Snell Snell,M M.E., E Thompson Thompson,J J.R., R Tasse, Tasse M., M VerdugoAlonso, Alonso M.A., MA &Wehmeyer,M.L.(2012).Usersguidetoaccompanythe11theditionof IntellectualDisability:Definition,Classification,andSystemsofSupports: Applicationsforclinicians,educators,organizationsprovidingsupports, policymakers, makers familymembersandadvocates advocates,andhealthcare professionals.Washington,DC:AmericanAssociationonIntellectualand DevelopmentalDisabilities. Schalock,R.L.,BorthwickDuffy,S.,Bradley,V.J.,Buntinx,W.H.E.,Coulter, D.L.,Craig,E.M.,Gomez,S.C.,Lachapelle,Y.,Luckasson,R.,Reeve,A., Shogren,K.A.,Snell,M.E.,Spreat,S.,Tasse,M.J.,Thompson,J.R.,Verdugo ,M.A., ,Wehmeyer, y ,M., ,&Yeager, g ,M.H.(2010). ( ) Intellectualdisability: y Alonso, Definition,classification,andsystemsofsupports (11thed.).Washington, DC:AmericanAssociationonIntellectualandDevelopmentalDisabilities. (TranslatedintoChinese,French,Hebrew,Korean,Spanish)

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Thankyou
RuthLuckasson, Luckasson JD DistinguishedProfessor Ch i Dept.of Chair, fEducational d i lSpecialties S i li UniversityofNewMexico Albuquerque,NM ruthl@unm edu ruthl@unm.edu

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