Identificationofchildrenwithdisabilities

Reviewofexistingtools,surveysandrecommendationsforGIZ

PreparedbyAlexanderThomasHauschildMobile:+62811939270Email:alex@alexanderhauschild.comSkype:alexander.hauschildLinkedin:www.linkedin.com/in/athauschildWebsite:www.alexanderhauschild.com

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Abbreviations

AHC AngkorHospitalforChildren

AU AfricanUnion

BILIC BandungIndependentLivingCentre

BMZ BundeministeriumfürwirtschaftlicheZusammenarbeitundEntwicklung(FederalMinistryforEconomicCooperationandDevelopment)

CBR CommunityBasedRehabilitation

CF ChildFunctioning

CIPS CambodianInter-SensalPopulationSurvey

CRPD CommitteeontheRightsofPersonswithDisabilities

DAC DisabilityActionCouncil

DHS DemographicHealthSurvey

DEval DeutschesEvaluierungsinstitutderEntwicklungszusammenarbeitgGmbH(GermanInstituteforDevelopmentEvaluation)

DMAT DevelopmentalMilestoneAssessmentTool

ES-F ExtendedSetonFunctioning

GERKATIN MovementfortheWelfareofIndonesia’sPersonswithHearingImpairment

GIZ DeutscheGesellschaftfürInternationaleZusammenarbeit

GOI GovernmentofIndonesia

GOT GovernmentofTanzania

HC HealthCentre

HEF HealthEquityFund

HI HandicapInternational

ICF InternationalClassificationofFunctioning

ILO InternationalLabourOrganization

INGO InternationalNon-GovernmentalOrganisation

IMCH ImprovedMaternalandChildHealthProgramme

MDS ModelDisabilitySurvey

MICS MultiIndicatorClusterSurvey

MoMT MinistryofManpoweradTransmigration

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MoP MinistryofPlanning

MoSA MinistryofSocialAffairs

Muskoka GIZImprovingandMaternalNewbornProjectinCambodia

NDSP NationalDisabilityStrategicPlan

NGO Non-GovernmentalOrganisation

OHCHR OfficeoftheHighCommissionerofHumanRights

PERTUNI IndonesianBlindUnion

SAPDA CentreforAdvocacyforWomenwithDisabilitiesandChildren

SEHATI AssociationofpersonswithdisabilitiesinSukoharjo

SIGAB LegalAidforInclusionandDisabilityAdvocacy

SUPAS SurveyPendudukAntarSurvey(NationalIntercensalPopulationSurvey)

SUSENAS SurveiSosialEkonomiNasional(NationalSocio-EconomicSurvey)

UN UnitedNations

UNCRC UnitedNationsConventionontheRightsoftheChild

UNCRPD UnitedNationsConventionontheRightsofPersonswithDisabilities

UNESCAP UnitedNationsEconomicandSocialCommissionforAsiaandthePacific

UNESCO UnitedNationsEducational,ScientificandCulturalOrganisation

UNICEF UnitedNationsChildren’sFund

SPP SocialProtectionProgramme

SUPAS SurveyPendudukAntarSensus(NationalIntercensalPopulationSurvey)

SUSENAS SurveySosialEconomicNasional(NationalSocio-EconomicSurvey)

TGPSH TanzanianGermanProgrammetoSupportHealth

WG WashingtonGroup

WHO WorldHealthOrganization

WHODAS WorldHealthOrganizationDisabilityAssessmentSchedule

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Glossary

Accessibility Accessibilitydescribesthedegreetowhichanenvironment,service,orproductallowsaccessbyasmanypeopleaspossible,includingpersonswithdisabilities.1

Barriers Factorsinaperson’senvironmentthat,throughtheirabsenceorpresence,limitfunctioningandcreatedisability–forexample,inaccessiblephysicalenvironments,alackofappropriateassistivedevices,andnegativeattitudestowardsdisability.2

CommunityBasedRehabilitation(CBR)

Astrategywithingeneralcommunitydevelopmentforrehabilitation,equalisationofopportunities,povertyreduction,andsocialinclusionofpersonswithdisabilities.CBRisimplementedthroughthecombinedeffortsofpersonswithdisabilitiesthemselves,theirfamilies,organisations,andcommunities,andtherelevantgovernmentalandnongovernmentalhealth,education,vocational,social,andotherservices.3

Disability Personswithdisabilitiesincludethosewhohavelong-termphysical,mental,intellectualorsensoryimpairmentswhichininteractionwithvariousbarriersmayhindertheirfullandeffectiveparticipationinsocietyonanequalbasiswithothers.4

DisabledPeople’sOrganisation(DPO)

Organisationsorassembliesestablishedtopromotethehumanrightsofdisabledpeople,wheremostthemembersaswellasthegoverningbodyarepersonswithdisabilities.5

Impairment IntheICFlossorabnormalityinbodystructureorphysiologicalfunction(includingmentalfunctions),whereabnormalitymeanssignificantvariationfromestablishedstatisticalnorms.6

InternationalClassificationofFunctioning,DisabilityandHealth(ICF)

Theclassificationthatprovidesaunifiedandstandardlanguageandframeworkforthedescriptionofhealthandhealth-relatedstates.ICFispartofthe‘family’ofinternationalclassificationsdevelopedbytheWorldHealthOrganization.7

Mainstreamservices Servicesavailabletoanymemberofapopulation,regardlessofwhethertheyhaveadisability–forexample,publictransport,educationandtraining,labourandemploymentservices,housing,healthandincomesupport.8

Physiotherapy Providesservicestoindividualstodevelop,maintain,andmaximisemovementpotentialandfunctionalabilitythroughoutthelifespan.Alsoknownasphysicaltherapy.9

Reasonableaccommodation

Necessaryandappropriatemodificationandadjustmentnotimposingadisproportionateorundueburden,whereneededinaparticularcase,toensurethatpersonswithdisabilitiesenjoyorexercise,onanequalbasiswithothers,allhumanrightsandfundamentalfreedoms.10

1WHO,2011,p.3012WHO,2011,p.3023WHO,2011,p.3024ConventionontheRightsofPersonswithDisabilities,Article1.http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx#15WHO,2011,p.3036WHO,2011,p.3057WHO,2011,p.3068WHO,2011,p.3069WHO,2011,p.30710WHO,2011,p.308

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Rehabilitation Asetofmeasuresthatassistsindividualswhoexperienceorarelikelytoexperiencedisabilitytoachieveandmaintainoptimalfunctioningininteractionwiththeirenvironment.11

TwinTrackApproach Workondisabilityandtopromotegenderequalityoftenuseatwintrackapproach.Thisisacombinationof:Mainstreaming:

Inthedisabilitysectorthisincludesworkingtoidentifyandovercomethebarriersinsocietythatpersonswithdisabilitiesface,e.g.physicalaccessibility,communication,attitude,legislation,andincludingpersonswithdisabilitiesintoallaspectsofdevelopment.Targetedactivitiesthatrespondtoparticularneedsorareasofinequality:

Fordisability,thisincludessupportingandempoweringpersonswithdisabilities,theirfamiliesandrepresentingorganisationsthroughincreasingtheiraccesstosupportservices,healthcare,education,livelihoodandsocialactivitiesaswellasthroughpoliticalempowerment.12

11WHO,2011,p.30812CBM,2017

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TableofContents

Abbreviations..............................................................................................................2Glossary.......................................................................................................................4Foreword...................................................................................................................10Background................................................................................................................10FrameworksandguidelinesfortheGermandevelopmentcooperation......................11UnitedNationsConventionontheRightsoftheChild(UNCRC)......................................11UnitedNationsConventionontheRightsofPersons(UNCRPD).....................................12Agenda2030&SustainableDevelopmentGoals(SDGs)..................................................12AfricanUnionContinentalPlanofActionfortheAfricanDecadeofPersonswithDisabilities2010–2019....................................................................................................14IncheonStrategyto“MaketheRightReal”DisabilitiesinAsiaandthePacific................14BMZActionPlanfortheInclusionofPersonswithDisabilities........................................14Methodology.............................................................................................................16Literaturereview..............................................................................................................16Questionnaire...................................................................................................................16Skypeconferencecalls.....................................................................................................16Internationaloverview...............................................................................................18Modelsofdisability..........................................................................................................18Moralmodel.................................................................................................................18Charitymodel...............................................................................................................18Medicalmodel..............................................................................................................18Socialmodel..................................................................................................................19Biosocialmodel(ICF).....................................................................................................20

Kindofdatasources.........................................................................................................21Nationalcensuses.........................................................................................................21Householdsurveys........................................................................................................21Administrativerecords..................................................................................................22Clinicalassessments.....................................................................................................22Qualitativestudies........................................................................................................22

Disabilitydatacollectiontools..........................................................................................23UNWashingtonGrouponDisabilityStatistics(WG)....................................................23DevelopmentalMilestoneAssessmentTool(DMAT)....................................................26WHODisabilityAssessmentSchedule2.0(WHODAS2.0).............................................26Physicalscreeningtools................................................................................................27

Disabilitydatasources......................................................................................................28DemographicHealthSurvey(DHS)...............................................................................28MultiIndicatorClusterSurvey(MICS)...........................................................................29

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ModelDisabilitySurvey(MDS).....................................................................................30Country-specificoverview..........................................................................................31Cambodia.........................................................................................................................31Nationallegalguidelines..............................................................................................31Data..............................................................................................................................31GIZprogrammeinitiatives............................................................................................36Conclusion.....................................................................................................................40

Indonesia.........................................................................................................................41Nationallegalguidelines..............................................................................................41Data..............................................................................................................................41GIZprogrammeinitiatives............................................................................................44Conclusion.....................................................................................................................44

Tanzania.........................................................................................................................45UNCRPD........................................................................................................................45Data..............................................................................................................................45GIZprogrammesinitiatives...........................................................................................45Conclusion.....................................................................................................................46

Conclusionandrecommendations.............................................................................47Twin-TrackApproach........................................................................................................51Annexes.....................................................................................................................53Annex1–ExampleICFuse...............................................................................................53Annex2–WGShortsetofQuestions..............................................................................55Annex3–WGExtendedQuestionSetonFunctioning....................................................56Annex4–WGChildFunctioningAge2to4yearsold......................................................67Annex5–WGChildFunctioningAge5to17yearsold....................................................69Annex6–MICSquestionnaireforchildrenunderfive,sectiononchildfunctioning......72Annex7–MICSquestionnaireforchildrenage5-17,sectiononchildfunctioning.........75Annex8–Questionnaire..................................................................................................78Annex9–DMATperformancechartswithage-windows................................................80DenverIITestChart......................................................................................................80MalawiDMATperformancecharts..............................................................................81KhmerDMATperformancecharts................................................................................83

Annex10–CambodianCommunity-basedDMAT(CBDMAT).........................................85Annex11–NewbornTriageChecklist..............................................................................88Annex12–Differencesinperformance(Cambodia,MalawiandDenverII)...................90Bibliography...............................................................................................................94

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Tables

Table1:DisabilitysectorrelevantSDGs...........................................................................12Table2:GIZprogrammesconsulted.................................................................................16Table3:ListofSkypeconferencecalls.............................................................................16Table4:ThreedomainsoftheICF....................................................................................20Table5:WGShortSetofQuestions.................................................................................23Table6:DHSDisabilityModuleQuestions(2016)............................................................28Table7:MICSinIndonesiaandTanzania.........................................................................29Table8:CIPSage&genderdisaggregateddisabilityprevalence.....................................33Table9:CDHSdisabilitydata-totalanddisaggregatedbyage,basedonWGdisability

prevalencemodel1..................................................................................................34Table10:CDHSdisabilitydata-totalanddisaggregatedbyage,basedonWGdisability

prevalencemodel3..................................................................................................34Table11:CDHSdisabilitymodule.....................................................................................35Table12:Averagedifferenceinage-windowofperformancebydomain(cDMAT1,

Malawi&DenverII)..................................................................................................38Table13:SUPAS2015disabilityquestionnaire................................................................43Table14:Tanzania2008DisabilitySurvey........................................................................45Table15:Toolsforprojectlevel.......................................................................................48Table16:Datasourcesforcountrylevelandmulti-sectoralprogrammes......................50

Figures

Figure1:BiosocialmodelofdisabilityaccordingtoICF...................................................21Figure2:WGquestionscut-offmodelstodeterminedisabilityprevalence....................24Figure3:DomainsoftheWGextendedsetofquestions.................................................25Figure4:WHODAS2.0domains.......................................................................................27Figure5:StrategicObjectivesoftheNDSP.......................................................................31Figure6:TypesofdisabilityinCambodianDeclaration....................................................32Figure7:Cambodiandisabilityclassificationsystem........................................................32Figure8:PercentageofpersonswithdisabilitiesinCambodiansurveys.........................36Figure9:AssessmentofdisabilityinurbanIDPoorquestionnaire...................................37Figure10:NumberofpersonswithdisabilitiesinsurveysinIndonesia...........................42Figure11:Estimatedpercentageofchildrenwithdisabilitiesage2-17inIndonesia......42Figure12:Twin-TrackApproach.......................................................................................52Figure13:ICFexample1..................................................................................................53Figure14:ICFexample2..................................................................................................53Figure15:ICFexample3..................................................................................................54

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Foreword

Iwouldliketothankthefollowingpeoplefortheirsupportduringthepreparationofthispaper:

- MrLarsWissenbach,Advisor–SectorInitiativeInclusionofPersonswithDisabilitiesatGIZofficeinBonn

- MsSilviaAgha,ProcurementandContractingatGIZofficeinEschborn- MrKlausBaesel,JuniorAdvisor–ImprovingMaternalandNewbornCareProjectatGIZofficein

PhnomPenh- MrPietdeMey,RegionalAdvisoronInclusiveDevelopmentAsiaatGIZofficeinPhnomPenh- MsCutSriRozanna,ProgramDirector–SocialProtectionProgramatGIZofficeinJakarta- MsElizabethDianaPerwitaSari,NationalAdvisorforInclusionofPersonswithDisabilityatGIZoffice

inJakarta- MrTolhasDamanik,ConsultantExpertforInclusionofPersonswithDisability- MrMahlilRuby,NationalAdvisorforSocialHealthInsuranceGIZofficeinJakarta- MrPhilippBornschlegl,DevelopmentAdvisorforTanzanianGermanProgrammetoSupportHealth

(TGPSH)&ImprovedMaternalandChildHealthProgramme(IMCH)atGIZofficeinDarEsSalam

Background

Childrenwithdisabilitiesareaparticularvulnerablegroup.Earlydetectionofchilddevelopmentdelaysand/orimpairmentsiscrucialasthefirstthreeyearsofachild’slifeareacriticalperiod.Ifnotidentifiedasearlyaspossible,theseconditionscanthreatenthedevelopmentofchildrenandmayhavelifelongimpacts.Notreachingcertainmilestonesbyacertainageisadevelopmentalwarningsignorredflag.Childrenwhodonotreachthosemilestonesmayneedextrasupportandservicestoreachtheirfullpotential.Oncedelaysaredetected,thosechildrenneedtobereferredforprofessionalassessment.Whenconfirmed,earlyinterventionneedstobeensuredinmedicalandphysicalrehabilitation(aswellasothermeansofsupport),enablingtheminthelongruntoparticipatefullyinthesocietytotheirfullabilities.

Atthesametime,suchidentificationprocessesformacrucialpreconditionfortheaccessofpersonswithdisabilitiestoadequatehealthcare,rehabilitationandsocialprotection.Theaccessofchildrenwithdisabilitiestohealthservicesisoftenevenmorelimited,leadingtohealthandotherinequalitiesunconnectedtotheirdisabilities.Mostchildrenwithdevelopmentaldelaysarenotidentifiedintimeforthemtobenefitfromearlyinterventionservices.Toooften,signsofapotentialdevelopmentaldisabilityarenotrecognizedwithintheirenvironment.Theidentificationandtargetingofpersonswithdisabilitiesingeneralandchildrenwithdisabilitiesinparticularisaworldwidechallenge.Thelackofidentificationmakesthemaninvisiblegroupforpotentialearlycaresupport,eitherwithregardtopublicserviceprovidersor(GIZ)developmentprograms.Therefore,monitoringeachchild'sdevelopmentcanhelptosystematically

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assesspotentialneedswithregardtogeneralandspecificservicesaswellaspre-conditionsforaccessingamongstotherthehealth,socialprotectionandeducationsystem.

Whilethequalityandimplementationofapproachestomeasuredisabilityprevalenceanddisaggregatecensusandsurveydataondisabilityincreasedoverthepastyears,theidentificationofchildrenwithdisabilitiesuptotheageoffivestillremainsamajorchallenge.Atthesametime,GIZhealth,childhealthandsocialprotectionprogramsfromdifferentregionsaswellasotherdevelopmentstakeholdersrequirevalidapproachesandtoolstoaddressthisissueandindicatetheneedforasimpletooltoidentifyyoungchildrenwithdisabilities.

Theobjectiveofthisshort-termprojectistosetupaGIZtaskforce,includingcolleaguesfrombothGIZprogramsinAsiaandAfrica,inordertoshareinformation,experienceandexpertisewithregardtotheidentificationofchildrenwithdisabilitiesthroughthedevelopmentandimplementationofapproachestoidentifychildrenwithdisabilities.

BasedonexperiencesgatheredinCambodiaandothercountries,thetaskforceaimsatpoolingexpertiseofGIZprojectsandrelevantpartnerstodevelopguidelinestoidentifyculturallyappropriatechilddevelopmentalmilestonesandestablishrespectivescreeningtoolsforchildrenaged0-5years.

FrameworksandguidelinesfortheGermandevelopment

cooperation

UnitedNationsConventionontheRightsoftheChild(UNCRC)

TheUnitedNationsConventionontheRightsoftheChild’sarticle23makesitmandatoryforallratifyingpartiesoftheUNCRCtoensurethata

‘ … disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.’ (UN, 1989)

Thisisonlyachievableifqualitydataonchildrenwithdisabilitieshasbeencollectedandmadeavailabletoallpartiesconcernedinordertobothinformthedevelopmentandimplementationofindividualassistivearrangementsandtoensuretheaccessibilityofpublicspacesandservices.

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UnitedNationsConventionontheRightsofPersons(UNCRPD)

TheUnitedNationsConventionontheRightsofPersonswithDisabilitiesurgesgovernmentsinarticle31tocollectdataonpersonswithdisabilities.Thedatacollectionshallbeimplementedaccordingtointernationalhumanrights-andtechnicalstandards:

‘States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention …’ (UN, 2006)

AsofOctober2017,theconventionhasbeenratifiedby174countriesandisthereforelegallybindingforthem.Germanyratifiedtheconventionon24thFebruary2009(OHCHR,2017).Article32oftheUNCRPDurgesstatepartiestoincludetheconcernsofpersonswithdisabilitiesintheirinternationalcooperationandtoensurethatcooperationisinclusive.

Agenda2030&SustainableDevelopmentGoals(SDGs)

TheUN’sAgenda2030forSustainableDevelopmentacknowledgesthegapofavailabledisabilitydatatomeasureprogresstowardstheSDGsaswellastheneedforcapacitybuildingtostrengthendatacollectionsystems.(UN,2015,p.13)Agenda2013thereforeurgesallUNmemberstates

‘… to increase significantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts’ (UN, 2015, p. 27)

AllSDGsareimportantforinclusiveandpeacefulworldwidedevelopmentandrelevantforpersonswithdisabilities.HoweverthefollowingSDGsareespeciallyrelevantforthedisabilitysector:

Table1:DisabilitysectorrelevantSDGs

Ensurehealthylivesandpromotewell-beingforallatallages.

SDG3aimsatreducingthemortalityrateofnewbornsandchildrenandaccesstoqualityhealthcareforall,includingpersonswithdisabilities.

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Ensureinclusiveandequitablequalityeducationandpromote

lifelonglearningopportunitiesforall.

SDG4focusesoneliminatinggenderdisparitiesandequalaccesstoalllevelsofeducationforall,includingpersonswithdisabilities.Italsocallsforanupgradingofeducationfacilitiestobechild,disabilityandgendersensitiveandatthesametimeprovidesafe,inclusiveandeffectivelearningenvironments.

Promotesustained,inclusiveandsustainableeconomicgrowth,

fullandproductiveemploymentanddecentworkforall.

SDG8aimsatachievingfullandproductiveemploymentanddecentworkforallwomenandmenincludingwomenandmenwithdisabilitiesonabasisofequalpay.

Reduceinequalitywithinandamongcountries.

SDG10focusesonstrengtheningthesocial,economicandpoliticalinclusionofall,includingpersonswithdisabilities.

Makecitiesandhumansettlementsinclusive,safe,resilientand

sustainable.

SDG11callsondevelopingaccessible,safe,affordableandsustainablepublictransportationthatcatersalsofortheneedsofpersonswithdisabilities.SDG11alsodemandstheprovisionofanduniversalaccesstosafepublicspaces.

Strengthenthemeansofimplementationandrevitalizetheglobal

partnershipforsustainabledevelopment.

SDG17stressesthatthecollectionofqualitydataiscrucialformonitoringprogresstowardstheSDGs.ChildrenwithdisabilitiesbenefitfromimproveddatacollectionmechanismsinrelationtoSDG3andSDG4.

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AfricanUnionContinentalPlanofActionfortheAfricanDecadeofPersons

withDisabilities2010–2019

TheAfricanUnion(AU)reaffirmstheneedforqualitydatacollectiondisaggregatedbygenderonpersonswithdisabilities.(AfricanUnionCommission-DepartmentofSocialAffairs,2010,p.15)AUmemberstatethereforeshallimprovegapsindataregardingdisabilityinruralareasandfacilitateinformationsharingtoallstakeholders.(AfricanUnionCommission-DepartmentofSocialAffairs,2010,p.29)

IncheonStrategyto“MaketheRightReal”DisabilitiesinAsiaandthe

Pacific

TheIncheonStrategy’sgoal8statesthatdataonpersonswithdisabilitiesintheAsiaandthePacificregionisstillinadequate.Variousdefinitionsoftheterminologiesdisabilityandpersonswithdisabilitiesthathavebeenusedcontributetothesituation.Goal8callsonstatestodevelopdatacollectionsystemsthatarebasedontheICFbyage,sex,raceandsocioeconomicstatus.(UNESCAP,2012,pp.31-32)

BMZActionPlanfortheInclusionofPersonswithDisabilities

In2013,theBMZdevelopeditsActionPlanfortheInclusionofPersonswithDisabilitiesonthebasisoftheUNCRPD.PillartwooftheactionplanurgestheGermandevelopmentcooperationto‘…fostertheinclusionofpersonswithdisabilitiesinourpartnercountries.’.Threesub-objectiveshavebeenformulatedtoachievethis:(BMZ,2013,p.10)

> Mainstreaminclusionofpersonswithdisabilitiesinplanningandreviewmechanisms.

> Implementtwin-trackapproachfordisabilityinclusivedevelopmentbypromotingdisabilityspecificinterventionsandrollingoutnewdisabilityinclusivedevelopmentsprogrammes.

> Developknowledge,understandingandskillsofdevelopmentstaff.

Withviewsondata,thisshallleadto‘…scientificallycollateddataontheinclusionofpersonswithdisabilitiesatinternationallevel…’andto‘…needs-drivenandinformedengagement,andallowustodisseminateexamplesofpositivelessonslearnedininclusivedevelopmentcooperation.’(BMZ,2013,p.15)

TheGermanInstituteforDevelopmentEvaluation(DEval)evaluatedtheBMZActionPlanfortheInclusionofPersonswithDisabilitiesin2016/17.Theevaluationcametotheconclusionthat‘theoverarchinggoalofthisactionplan…thesystematicmainstreamingoftheinclusionofpersonswithdisabilitiesinGermandevelopmentpolicy’wasachievedinlowtomoderateproportions.(Schwedersky,Ahrens,&Steckhan,2017,p.vii)

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Theactionplanwillbefollowedbyasupra-sectoralstrategyin2018.Basedontherecommendationsoftheevaluation,thefuturestrategywillincludeastrongfocusonthesupportofthedisaggregationofdatabydisabilitythroughGermandevelopmentcooperation.

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Methodology

Literaturereview

TheliteraturereviewincludedtheassessmentofrelevantpublicationandwebsitesofUNagencies,scientificarticles,publicationofGIZprojects,nationallawsandregulationsandotherpublications.Afulllistofdocumentsisavailableinthebibliographyattheendofthispaper.

Questionnaire

AquestionnairehasbeendesignedtogatherinformationaboutthefollowingGIZprogrammesinCambodia,Indonesia,andTanzania:

Table2:GIZprogrammesconsulted

Country Nameofprogramme

Cambodia Muskoka–ImprovingMaternalandNewbornCareProjectIndonesia SPP–SocialProtectionProgrammeTanzania TGPSH–TanzanianGermanProgrammetosupporthealth

IMCH–Improvementofmaternalandchildhealth

Thequestionnairecoversquestionsaboutinvolvementofpersonswithdisabilitiesincludingchildrenintheprogramme;accesstodata;needfordata;howqualitydatahasthepotentialtosupporttheprogramme;datacollection;andchallengesduringdatacollection.Thefullquestionnaireisaccessibleinannex8.

Skypeconferencecalls

ToachieveabetterunderstandingofGIZprogrammesinCambodia,IndonesiaandTanzaniaSkypecallshavebeenarrangedwithprogrammerepresentativesinthecountries.ThefollowingSkypeconferencecallshavebeenheld:

Table3:ListofSkypeconferencecalls

Location Date Participants

Bonn&

Phnom

Penh

29thAugust2017 MrLarsWissenbach,Advisor–SectorInitiativeInclusionofPersonswithDisabilities(Bonn)MrKlausBaesel,JuniorAdvisor–ImprovingMaternalandNewbornCareProject(PhnomPenh)MrPietdeMey,RegionalAdvisoronInclusiveDevelopmentAsia(PhnomPenh)

26thSeptember2017 MrPietdeMey,RegionalAdvisoronInclusiveDevelopmentAsia(PhnomPenh)

17thOctober2017 MrPietdeMey,RegionalAdvisoronInclusiveDevelopmentAsia(PhnomPenh)

19thOctober2017 MrPietdeMey,RegionalAdvisoronInclusiveDevelopmentAsia

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(PhnomPenh) 25thOctober2017 MrPietdeMey,RegionalAdvisoronInclusiveDevelopmentAsia

(PhnomPenh)Jakarta 13thSeptember2017 MsCutSriRozanna,ProgramDirector–SocialProtectionProgram

MsElizabethDianaPerwitaSari,NationalAdvisorforInclusionofPersonswithDisabilityMrTolhasDamanik,ConsultantExpertforInclusionofPersonswithDisabilityMrMahlilRuby,NationalAdvisorforSocialHealthInsurance

DarEs

Salaam

14thSeptember2017 MrPhilippBornschlegl,DevelopmentAdvisorforTanzanianGermanProgrammetoSupportHealth(TGPSH)&ImprovedMaternalandChildHealthProgramme(IMCH)

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Internationaloverview

Thissectionprovidesasummarizedoverviewontheunderstandingofdisabilityalsoknownasmodelsofdisability.Thispartwilldiscussthetermsimpairment,disabilityandbarriers.Theyarecrucialterminologiesfortheunderstandingofcurrentdisabilitymodels.

Thenextpartpresentsdifferentkindsofdatasources.Thispartdiscussestheindividualcharacteristicsandstrengthsofeachdatasource.

Thethirdpartdiscussestheprominentdatacollectiontoolsanddiscussestheirusage.

Modelsofdisability

Fivemodelsofdisabilityarediscussedhere.Eachmodeloffersadifferentunderstandingofdisabilityandpersonswithdisabilities.Sincethemoral,charityandmedicalareout-dated,onlyabriefdescriptionisgiven.Moreemphasiseispaidtothesocialandbiosocialmodel.

Moralmodel

Themoralmodeldescribesofdisabilityasacurseorapunishmentgivenbyanexternalforcethatmighthaveresultedfromwrongdoingsofancestorsinthepastorasaresultofsinfulbehaviourofparents.

Charitymodel

Inthecharitymodelofdisability,personswithdisabilitiesareseenasweekandinneedofpityandcharity.Mainstreamsocietybeliefsthatpersonswithdisabilitiesarenotabletoliveindependentlyandneedtobelookedafter.Verymuchfocusisgiventowhatapersonwithadisabilitycannotdoinsteadratherthanwhatsheorheisabletodoandhowtheycansheorhecanbeempowered.

Medicalmodel

Overthelastdecade,theperspectiveofpersonswithdisabilitieshasshiftedfromfocusingonimpairmentandthereforethelossoffunctionofthebodyandtheneedto“fix”theperson–knownasthemedicalmodelofdisability–torecognisingtherightsofpersonswithdisabilitiesandtheimportanceofremovingbarriersintheenvironment/societyinordertoincludingtheminallaspectsoflife.Theout-datedmedicalmodelofdisabilityvieweddisabilityasameremedicalissuethatcanbecuredorrelievedthroughmedicalinterventions.Themedicalmodelofdisabilityisnotcompatiblewithcurrent

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humanrightsbasedapproachestodisabilityasenshrinedintheUNConventionontheRightsofPersonswithDisabilities(UNCRPD)andotherframeworks.

Socialmodel

The2006UNConventionontheRightsofPersonswithDisabilitiesdeclaresinitspreamblethat

“… disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others, …” (UN, 2006)

Havingsaidthis,theUNCRPDchangestheparadigmonhowsocietiesunderstand

disability:

Disabilityresultsfromtheinteractionofapersonwithanimpairmentwithsocietyifsocietyhasdevelopedbarriersfortheparticipationofpersonswithdisabilities.Societiesthatremovebarrierstoparticipationcreateinclusiveenvironmentsthatenableallpersons–includingpersonswithdisabilities–tohaveaccesstopublicservicesaswellasfacilitiesandparticipateincommunallive.Theyarethereforeincluded.“Fixingtheenvironment”byremovingbarrierstoparticipationleadstomediationoftheimpactofthefunctionallimitationonthequalityoflifeofthepersonandreduceddisability.

Thenewframeworkdoesnotcontainanynewrights,butappliesexistinghumanrightstothespecificsituationofpersonswithdisabilities.ThechangethattheUNCRPDhasbroughtisthatpersonswithdisabilitiesareactivesubjectswithrightsthattheycanclaim.Thisreaffirmstheparadigmshiftfromviewingpersonswithdisabilitiesasobjectsofcharityandpitytosubjectswithrights.Thesocialandrights-basedmodelofdisabilitydeclaresthat

- Disabilityistheresultofinteractionofanindividualwithsociety.- Disabilitydoesnotliewithintheindividual.- Societycreatesbarriers(e.g.attitudinal,environmental,policies,etc.)and

thereforedisablestheparticipationofsomeindividuals.- Underthesocialmodel,societymustchangesothatbarriersforindividualsare

removed.

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Biosocialmodel(ICF)

ThebiosocialmodelaccordingtotheICFseekstodetermineaperson’sdisabilitystatusonthreedomains(WHO,2002,p.10):

Table4:ThreedomainsoftheICF

Domain Description Influencedby

Bodyfunctioningthen

structures

Functioningatthelevelofthebody.

Impairments.

Activity Functioningattheleveloftheindividual.Activitiesaredeliberateactiontoaccomplishatask.

Activitylimitations.

Participation Functioningofapersonasamemberofsociety.Participationreferstoactivitiesthatareintegraltoeconomicandsociallife.

Involvementofpeopleinallareasofliveandparticipationrestrictionstheyexperience.

Thethreedomainsareinfluencedby(WHO,2002,p.10):

> Personalfactors,suchasgenderandage,mentalandemotionalstatus.> Environmentalfactors,suchasaccommodationforimpairmentinthebody

functioningdomain.> Healthcondition,suchasdisordersordiseases.

Therefore,disabilityintheICFarisesoutoflimitationsandrestrictionsduetotheinteractionofbodystructureandfunctioningandunaccommodatingenvironmentinfluencedbypersonalfactorsandhealthcondition.

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Figure1:BiosocialmodelofdisabilityaccordingtoICF13

ExamplesoftheappliedICFareinannex1.

Kindofdatasources

Therearemanydifferentwaystoraisestatisticalpopulationdata.Acommonformisthenationalcensusthatasksagenericsetofquestionsaboutallmembersofapopulation.Householdsurveysnowadaysoftenincludeamoduleondisability.Eachofthedatasourcesoutlinedbelowhasitsownstrengthsandlimitationswhenitcomestocollectingdataonpersonswithdisabilitiesandespeciallyyoungchildrenwithdisabilities.(Cappa,CollectingDataonChildDisability,2014)(Cappa,Petrowski,&Njelesani,Navigatingthelandscapeofchilddisabilitymeasurement:Areviewofavailbledatacollectioninstruments,2015)

Nationalcensuses

Apopulationcensusrepresentsacompleteenumerationofthepopulationincludingeveryhouseholdandnosampling.Populationcensusesareverycostlyendeavoursduetothelargenumberofpersonstobecovered.Characteristicscoveredinapopulationcensusarecarefullychosenandlimitedtokeepthecostsoftheendeavourundercontrol.Nationalpopulationcensusesareusuallyimplementedeverytenyears.

Householdsurveys

Surveysaremorespecificanddetailedthancensuses.Surveysareoftenusedtogetmorespecificdataandinformationonasampleofthepopulationselectedfromotherinstrumentslikeforinstancecensuses.Surveysareoftenspecialisedandfocuson

13SeeWHO(2002),p.9

22

differenttopicssuchasagriculture,education,labour,health,socio-economicissues,orwelfare.Thespecialisationofthesurveydependsonthefieldofworkoftheinstitution.

Administrativerecords

Earlychildhoodcentres,schools,universities,socialsecuritysystems,rehabilitationprogrammes,civilregistrationbureausandmanyothergovernmentinstitutionsgatheradministrativedatatomanageandmonitorprogrammes.Thepurposeofthisdatasetsistomonitortheimplementationofaprogrammetowardstheachievementofanationalactionplanordevelopmentpolicy.Asthiskindofdataiscollectedforaspecificpurposeitcangiveafarmorein-depthoverviewonapopulationaccessingacertaingovernmentservice.

Clinicalassessments

Clinicalassessmentsofchildrenaredetailed,lengthyandresourcerichexaminationsofachild.Theexaminationsincludeassessmentsofachild’shealth,observationsonitsbehaviourindifferentsituationsofdailyliving,reportsfromparents,earlychildhoodcareandschoolteachersandothers.Theinformationgatheringprocessislengthyandincludesconsultationswithaninter-disciplinaryteamofprofessionalsthatarenotlimitedtohealthprofessionalsonly.Clinicalassessmentscangiveusefulinsightsforstudiesaboutthecausesofdisability14,planningandmonitoringpreventionstrategiesandcounsellingapproaches.

Qualitativestudies

Qualitativestudiesareessentialforunderstandingdisabilityandgivebetterunderstandingtothenumberandstatisticsgatheredincensuses,surveysandadministrativerecords.Qualitativestudiesarelimitedtoaselectedpopulationorselectedenvironmentbuthavethepotentialtogathermanydifferentvoices.Theyhavethepotentialtogiveanswerstosubjectivefeelingsanddrawapictureofculturalattitudes,beliefsandtraditionsthateitherenhanceorreducedisability.Qualitativestudiesareespeciallyusefultoolsinenvironmentswherenodataareavailableasquestionsandmethodscanbeadaptedtothelocalcontext.

14SeeSocialmodel:interactionwithsocietyasacauseofdisability

23

Disabilitydatacollectiontools

UNWashingtonGrouponDisabilityStatistics(WG)

TheWashingtonGroupisoneofcurrentlynineactiveUnitedNationsStatisticsCommissionCityGroups.15TheWashingtonGroupconsistsofrepresentativesofnationalstatisticalofficesandworksinclosecooperationwithUNagencies,bi-lateraldonors,NGOs,DPOsandresearchinstitutions.TheWashingtonGroupwasestablishedin2001duetotheneedforinternationalcomparabledataonpersonswithdisabilities.TheWashingtonGroupdevelopedseveralsetsofquestionsfordifferentagegroupsandpurposes.Thesetsofquestionscanbeintegratedintolargersurveysorcensuses.(WashingtonGrouponDisabiltyStatistics,2017)

ShortSetofQuestions

TheShortSetofQuestionswasthefirsttooldevelopedbytheWG.Thequestionspurposeistoidentifywhetherpeoplehavechallengesperformingbasicactivitiesofdailylifeinsixdomains(seeing,hearing,walking,remembering,self-care,communicating).TheWGShortSetofQuestionsisdisplayedintable4togivethereaderanideahowtheWGquestionsareformulated.TheotherWGquestionsetsareformulatedinasimilarmannerandavailableintheannexes.Thesixquestionsandpossibleanswersareasfollowed:

Table5:WGShortSetofQuestions

No. Questions Answers

1 Doyouhavedifficultyseeing,evenifwearingglasses?

No-nodifficulty

Yes-somedifficulty

Yes-alotofdifficulty

Cannotdoatall

2 Doyouhavedifficultyhearing,evenifusingahearingaid?

No-nodifficulty

Yes-somedifficulty

Yes-alotofdifficulty

Cannotdoatall

3 Doyouhavedifficultywalkingorclimbingsteps?

No-nodifficulty

Yes-somedifficulty

Yes-alotofdifficulty

Cannotdoatall

4 Doyouhavedifficultyrememberingor

concentrating?No-nodifficulty

Yes-somedifficulty

Yes-alotofdifficulty

Cannotdoatall

5 Doyouhavedifficulty(withself-caresuchas)washingalloverordressing?

No-nodifficulty

Yes-somedifficulty

Yes-alotofdifficulty

Cannotdoatall

6 Usingyourusual(customary)language,doyouhavedifficultycommunicating,forexampleunderstandingorbeingunderstood?

No-nodifficulty

Yes-somedifficulty

Yes-alotofdifficulty

Cannotdoatall

15Seehttps://unstats.un.org/unsd/methods/citygroup/formoreinformationonactiveandcompletedUnitedNationsStatisticsDivisionCityGroups.

24

Thedefinitionofdisabilityanddisabilityprevalencevaries,dependingonthedefinedthresholdoffunctioningseverity,numberofdifficultiesinthegivendomainsorboth.

Therearedifferentapproachestodefinepopulationswithandwithoutdisabilities.Theprevalencedependsonthecut-offtobeusedwiththeWGquestions.Figure2showsfourexamplemodelscut-offstomeasuredisabilityprevalence.(StatisticsSouthAfrica,2017)Model3isthecutoffrecommendedbytheWG.(WashingtonGrouponDisabilityStatistics,2017)

Figure2:WGquestionscut-offmodelstodeterminedisabilityprevalence

Theselectionofthedisabilitymeasuremodelmightdifferfromcountrytocountryordependingonthedatacollectionpurposes.Forexample,theStatisticsOfficeofSouthAfricafollowsmodel2,whereasdisabilityisdefinedashavingatleastsomedifficultiesinatleasttwodomains.(StatisticsSouthAfrica,2017)

Theintentionoftheshortsetofquestionsisnottobeusedinisolationbuttobeintegratedinlargerpopulationcensusesordedicatedsurveys.Theshortsetofquestionsallowsforthedisaggregationoverdisabilityofthecensusorsurveydata.(WashingtonGrouponDisabilityStatistics,2017)

ExtendedSetofQuestionsonFunctioning(ES-F)

Whiletheshortsetofquestions’intentionistobeinsertedintoexistingcensusesorsurveys,thegoaloftheextendedsetofquestionsonfunctioningistocollectdataondisabilitywheremoreinformationisrequired.Theextendedsetofquestionsonfunctioningincludesthefollowingdomains:

Model1:Thisincludeseveryonewithatleast

onedomaincodedassomedifficulty,alotofdifficulty,or

cannotdoatall

Model2:Slightlymorerestrictive:includes

everyonewithatleasttwodomainscodedassomedifficulty,alotofdifficulty,orcannotdoatall

Model3:Thisexcludesthemildestdegreesofdifficulty.Includeseveryonewithatleastonedomaincodedasalotof

difficultyorcannotdoatall

Model4:Anarrowmeasurethatfocusesonthemostseverelevelsofdifficulty:Includeseveryonewithatleastonedomaincodedascannotdoatall

SixdomainsofWGquestions

25

Figure3:DomainsoftheWGextendedsetofquestions

Italsoaddressesissuessuchasassistivedevices,ageandenvironmentalfactors.(WashingtonGrouponDisabilityStatistics,2017).

Theextendedsetofquestionsonfunctioningisaccessibleinannex3.

ChildFunctioningModule(CF)

TheWGrealisedthatthetwoexistingsetsofquestionshavetheirlimitationsidentifyingchildrenwithdisabilities.Thisisduetothereasonthatquestionsforadultsarenotalwaysappropriateforchildren.Forexample,identifyingcommunicationproblemsinadultsiseasierthatinchildrenwhoarestilldevelopingtheseskillsaspartoftheirdevelopment.

Therefore,incooperationwithUNICEF,theWGdevelopedtwosetsofquestionsfortheidentificationofchildrenagetwotofouryearsoldandchildrenagefivetoseventeenyearsold.TheWGcametotheconclusionthatitisnotfeasibletoidentifydisabilityamongchildrenbelowtwoyearsofagethroughcensusesandsurveys.Thequestionsaredesignedtotargetthechild’smotherorprimarycaregiver.Bothsetsofquestionsexpandonthefunctionaldomainsofchildren,wheredisabilitiesaremainlyrelatedtointellectualfunctioning,affectandbehaviour.Ageappropriatechallengesareidentifiedbyusingquestionsthatstartwiththephrase“Comparedwithchildrenofthesameage…”.Thequestionscanbeusedascomplementaryquestionssetsforexistingcensusesorsurveys.(WashingtonGrouponDisabilityStatistics,2017)Forthemoment,however,censusesandsurveyswhichincludetheWashingtonGroupQuestionsappeartofocusontheshort-setofquestionsforthepopulation5yearsandorolderduetolimitedresources,thuseffectivelyexcludingallchildrenbelowthatage.Thequestionsetforchildrenagetwotofouryearsoldisaccessibleinannex4.Thesetforchildrenagefivetoseventeenisaccessibleinannex5.

Acritiqueonthechildfunctioningmodulerelatestothewayagerelatedquestionsareformulated.Thephrase“comparedwithchildrenofthesameage”leaveswideroomforinterpretationandnotallchildrendevelopatthesamepace.Somechildrenareableto

vision hearing mobility cognitionaffection(anxiety&depression)

pain fatigue communication upperbodyfunctioning

26

performcertainactivitiesearlierthanothers,somechildrenlaterwithouthavingadevelopmentaldelay.TheDenverII,MalawiandtheKhmerDevelopmentMilestonesAssessmentTools(DMAT)16forinstancedocumentclearlytheagewindowforspecificskilldevelopmentsinchildrenwhicharecountry-specific.

DevelopmentalMilestoneAssessmentTool(DMAT)

Thepurposeofdevelopmentalmilestoneassessmenttoolsistomonitorachild’sdevelopmentandscreenchildrenonpossibledevelopmentalchallengesordelays.17Theyareusuallyappliedtochildrenagezerotosixyearsold.DMATsuseperformanceindicatorstomonitorachild’sdevelopment.Eachindicatorisgivenacertaintimebracketmeasuredinmonths.Shouldachildnotmeetacertainmilestoneinthespecifiedagerange,awarningsignorredflagisindicatedandearlyinterventionmustbetriggered.DMATsareabletodescribedifferentrangesofdisabilityprevalencedependingonwherethecut-offforadevelopmentaldelayhasbeenset.Acut-offsetat90%willgenerateahighernumberofredflagsthanacut-offof100%.Annex9displaysperformancechartsoftheDenverII,KhmerandMalawiDMATincludingdifferentcut-offs.DMATsincludeindicatorsforfinemotor-adaptive,grossmotor,personal-social,andlanguageskills.Awell-knownDMATistheDenverDevelopmentScreeningToolII18,whichisaccessibleinannex9.

DMATsaredifferingfromWGquestionsandWGquestionimplementationsinDHSorMICS.Clinicalpersonnelincludingmedicaldoctorsandphysiotherapistsincooperationwiththechild’sparentsusuallyuseDMATs.However,therehavebeeneffortstodevelopDMATsbasedontheSocialmodel19thattakethechild’senvironmentintoconsideration.

DMATsallowthecollectionofdataofchildrenbelowtheageoftwoyearsold.Togetvalidinformationonthedevelopmentofchildrenitisnecessarytoadaptthedevelopmentalmilestonestoculturalnormsofchilddevelopmental.AdevelopmentalgoalfortoddleroffivemonthsinGermanycanbeadevelopmentalgoalatadifferentagerangeifitgrowsupinCambodia.

WHODisabilityAssessmentSchedule2.0(WHODAS2.0)

WHODAS2.0isanassessmenttoolthatmeasureshealthanddisabilityatpopulationlevelorclinicalpractice.WHODAS2.0capturessixfunctioningdomains:

16Seefurtherbelowinthischapter.17See:Datasources–Clinicalassessments18Seehttp://denverii.com/19See:SocialmodelaswellasAHCDMATandKhmerDMAT

27

Figure4:WHODAS2.0domains

WHODAS2.0isbasedontheWHO’SICF20andthereforefocusesonfunctioninganddisability.WHODAS2.0isavailableindifferentversion.Thefullversionhas36questions,whiletheshorterversionfeaturestwelvequestions.Thedifferentversionscanbeadministeredbyaninterviewer,bythepersonsthemselves,orbyaproxy.(WHO,2010,pp.4-5)

TheWHODAS2.0doesnotfeatureyetaversionforchildrenoryouth.(WHO,2017)

Physicalscreeningtools

Physicalscreeningtoolsfornewbornchildrenareimportanttoolstodetermineweatheranewbornisinahealthycondition.Theycontributetoearlydetectionandearlyintervention.Physicalscreeningtoolscoverchildrenupuntilsixyearsold.Theysupporthealthpersonnelwiththeidentificationofimpairmentsanddiagnosisofimpairmentsandfollowamedicalmodelofdisability21.Thescreeningisusuallyfollowedupbymedicalrehabilitationinterventionsincasethescreeningidentifiesanimpairment.Thereisachanceofunder-identificationofchildrenwithdisabilitiesbecausechildrenmighthavefunctionallimitationsundertakinglifeactivitieswhichdonotmanifestasimpairments.

20See:

Biosocialmodel(ICF)21See:Medicalmodel

Domain1:Cognition–understanding

andcommunicating

Domain2:Mobility–movingand

gettingaround

Domain3:Self-care–attendingtoone’shygiene,dressing,eatingandstayingalone

Domain4:Gettingalong–interacting

withotherpeople

Domain5:Lifeactivities–domesticresponsibilities,leisure,

workandschool

Domain6:Participation–joiningincommunityactivities,participatinginsociety.

28

Disabilitydatasources

DemographicHealthSurvey(DHS)

DemographicHealthSurveys(DHS)arehouseholdsurveysthatcollectdataonhealthrelatedissues.Theusualsamplesizeisbetween5,000to30,000households.ADHSisconductedeveryfiveyearstoproducedatathatallowscomparison.(DHSProgram,2017)

ThecurrentDHSof2016featuresadisabilitymodulethatisbasedontheWGshortsetofquestionsandthechildfunctioningmoduleforchildrenfivetoseventeenyearsold.TheDHSdisabilitymoduleincludesthefollowingquestions:

Table6:DHSDisabilityModuleQuestions(2016)

DHS

question

number

Question AnswersBased

onWG22

26Does(NAME)wearglassesorcontactlensestohelpthemsee?

1=Yes2=No

CF1

27

Iwouldliketoknowif(NAME)hasdifficultyseeingevenwhenwearingglassesorcontactlenses.Wouldyousaythat(NAME)hasnodifficultyseeing,somedifficulty,alotofdifficulty,orcannotseeatall?

1=nodifficultyseeing2=somedifficulty3=alotofdifficulty4=cannotseeatall8=don'tknow

CF2

28

Iwouldliketoknowif(NAME)hasdifficultyseeing.Wouldyousaythat(NAME)hasnodifficultyseeing,somedifficulty,alotofdifficulty,orcannotseeatall?

1=nodifficultyseeing2=somedifficulty3=alotofdifficulty4=cannotseeatall8=don'tknow

CF3

29 Does(NAME)wearahearingaid?1=Yes2=No

CF4

30

Iwouldliketoknowif(NAME)hasdifficultyhearingevenwhenusingahearingaid.Wouldyousaythat(NAME)hasnodifficultyhearing,somedifficulty,alotofdifficulty,orcannothearatall?

1=nodifficultyhearing2=somedifficulty3=alotofdifficulty4=cannothearatall8=don'tknow

CF5

31

Iwouldliketoknowif(NAME)hasdifficultyhearing.Wouldyousaythat(NAME)hasnodifficultyhearing,somedifficulty,alotofdifficulty,orcannothearatall?

1=nodifficultyhearing2=somedifficulty3=alotofdifficulty4=cannothearatall8=don'tknow

CF6

32

Iwouldliketoknowif(NAME)hasdifficultycommunicatingwhenusinghis/herusuallanguage.Wouldyousaythat(NAME)hasnodifficultyunderstandingorbeing

1=nodifficultycommunicating2=somedifficulty3=alotofdifficulty4=cannotcommunicateatall

EF-S

COM_1

22CF=ChildFunctioning;ES-F=ExtendedSetofQuestionsonFunctioning

29

understood,somedifficulty,alotofdifficulty,orcannotcommunicateatall?

8=don'tknow

33

Iwouldliketoknowif(NAME)hasdifficultyrememberingorconcentrating.Wouldyousaythat(NAME)hasnodifficultyrememberingorconcentrating,somedifficulty,alotofdifficulty,orcannotrememberorconcentrateatall?

1=nodifficultyremembering/concentrating2=somedifficulty3=alotofdifficulty4=cannotremember/concentrateatall8=don'tknow

EF-S

COG_1

34

Iwouldliketoknowif(NAME)hasdifficultywalkingorclimbingsteps.Wouldyousaythat(NAME)hasnodifficultywalkingorclimbingsteps,somedifficulty,alotofdifficulty,orcannotwalkorclimbstepsatall?

1=nodifficultywalkingorclimbing2=somedifficulty3=alotofdifficulty4=cannotwalkorclimbatall8=don'tknow

EF-S

MOB_1

35

Iwouldliketoknowif(NAME)hasdifficultywashingalloverordressing.Wouldyousaythat(NAME)hasnodifficultywashingalloverordressing,somedifficulty,alotofdifficulty,orcannotwashalloverordressatall?

1=nodifficultywashingordressing2=somedifficulty3=alotofdifficulty4=cannotwashordressatall8=don'tknow

EF-S

SC_1

MultiIndicatorClusterSurvey(MICS)

MICSisahouseholdsurveytooldevelopedbyUNICEF.Untiltoday,295MICSsurveysin108countrieshavebeenimplemented.MICSgeneratedataonthewell-beingofchildrenandwomen.ThereportsanddatasetsareavailablefordownloadingontheMICSwebsite23.(UNICEF,2017)

ThefollowingMICShavebeenconductedinIndonesiaandTanzania(seetable6).NoMICShasyetbeenimplementedinCambodia.(UNICEF,2017)AllMICSlistedbelowhavebeenfinalisedpriortotheintroductionoftheWGmodulesonchildfunctioning.

Table7:MICSinIndonesiaandTanzania24

Round Country Year Reports Datasets

MICS4 Indonesia(PapuaSelectedDistricts) 2011 Final AvailableMICS4 Indonesia(WestPapuaSelectedDistricts) 2011 Final AvailableMICS2 Indonesia 2000 Final AvailableMICS1 Indonesia 1996 Final NotavailableMICS1 Tanzania,UnitedRepublicof 1996 Final Notavailable

23MICSwebsite:http://mics.unicef.org/24NoMICShasbeenimplementedinCambodia

30

MICSincludesmodulesforchildrenunder5yearsoldandchildrenage5to17.BothmodulesincludesectionsonchildfunctioningbasedontherespectiveWGquestionsetsonchildfunctioning.Therefore,themoduleforchildrenunder5yearsoldhoweverdoesnotcollectdataonchildfunctioningforchildrenbelow2yearsofage.

TheMICSquestionnairesectiononchildfunctioningforchildrenunder5isaccessibleinannex6.Thequestionersectionforchildrenage5to17yearsoldinaccessibleinannex7.Thetablesinannex6and7arecomplementedwithreferencestotherelevantWGquestionsetsonchildfunctioning.

ModelDisabilitySurvey(MDS)

TheMDSispopulationsurveythatisbasedontheICF.TheMDSisbasedontheassumptionthatdisabilityisanoutcomeofinteractionsbetweenpersonswithhealthconditionsandenvironmentalandpersonalfactors.

UpuntiltodaytheMDSdoesnotfeatureamoduleforchildrenandisadministeredtoadultsage18andabove.(WHO,2017,pp.6-7)

31

Country-specificoverview

Cambodia

Nationallegalguidelines

UNCRPD

TheRoyalGovernmentofCambodia(RGC)hasratifiedtheUNCRPDon20thDecember2012(OHCHR,2017).NoreporttotheCRPDhasbeensubmittedyetandnoshadowreporthasbeenpublished.

NationalDisabilityStrategicPlan(NDSP)2014-2018

TheRGCdevelopedin2013theNationalDisabilityStrategicPlan2014-2018.TheNDSPwaspublishedthroughtheRGC’sDisabilityActionCouncil(DAC).TheDACoverseestheimplementationoftheNDSPandcoordinatesdisabilityissuesinCambodia.

The10objectivesoftheNDSPare:(DisabilityActionCouncil,2014)

Figure5:StrategicObjectivesoftheNDSP

TheNDSPusesdatafromtheCambodianInter-CensalPopulationSurveyof2013thatidentified2.06%ofthepopulationhavingadisability(seebelow).Childrenwithdisabilitiesintheagebetweenzeroandfourteenyearsoldhavebeenidentifiedwith10.63%ofallpersonswithdisabilities.(DisabilityActionCouncil,2014,p.Acknowledgement)However,theRGCstatesintheNDSPthat“Lackofdisabilitydatamanagementsystemsandupdatesofdisabilitydataisinadequateandnotspecific.”(DisabilityActionCouncil,2014,p.7).

Data

Inter-MinisterialDeclarationonClassificationofTypesAndLevelsofDisabilities

Withaninter-ministerialdeclarationin2011,theRGCdevelopeditsownclassificationofdisabilitieswhichshouldbeimplementedbytheMinistryofHealth.Theclassificationisnotspecifictochildrenandisdevelopedonamedicalmodelpointofviewforphysical

1.Employment

2.Heathservicesincludingphysical

andmentalrehabilitation

3.Accesstojustice

4.Freedom,securityanddisasterriskreduction

5.Education

6.Freedomofexpression

7.Culture,religion,andsport

8.Accessibleenvironmentsandtransportation

9.Genderequality

10.Cooperationfrom

internationaltosub-nationallevel

32

andsensorialimpairmentsbutfocusesonfunctionalityfordisablingchronicdiseases.ItthereforedoesnotincludetheprinciplesoftheICF,UNCRPDortheWGquestionssets.

Thedeclarationmentionsfourtypesofdisabilitieswithphysicaldisabilityhavingfoursub-types:

Figure6:TypesofdisabilityinCambodianDeclaration

Annexedtothedeclarationisaclassificationsystemforeachofthefourtypesofdisability.Theclassificationhasthefollowinglevels:

Figure7:Cambodiandisabilityclassificationsystem

Themajorityofclassificationscomewithmedicalindicators.Fordisablingdiseasesthataffecttheinternalorgans,thelimitationsmeasurelimitationsinpersonalactivitiesandsociallife.Formentaldisability,thelossofabilitytocarryoutworkismeasured.Itisnotspecifiedhowthisismeasured.(RGC,2011,p.annexes)

CambodianInter-CensalPopulationSurvey(CIPS)

The2013CIPSidentifiedaverylownumberofpersonswithdisabilities.2,06%ofthetotalpopulationhasbeenidentifiedashavingadisability(RGC,2013,p.12).TheCIPSgathereddataondisabilityoverallagesinthepopulation.Thisresultedindisabilityratesdisplayedintable8.(RGC,2013,p.23)

Physicaldisability,includingdifficultiesmoving,difficulties,speaking,seeing,and

internalorgansimpairment

Intellectualdisability Mentaldisability Otherdisabilities

1-Profound 2-Severe 3-Moderate 4-Mild

33

Table8:CIPSage&genderdisaggregateddisabilityprevalence

TheWHOestimatesthatbetween10%-15%ofapopulationhassomeformofdisability(WHO,2011).ThereasonforthisdiscrepancyisprobablythewaytheonlyquestionondisabilityisformulatedinCIPS:‘physical/mentaldisability,ifany’.(RGC,2013,p.74)Thesekindsofquestionsondisabilityarelesslikelytomotivateintervieweestoindicatecorrectanswersandgeneratelowratesofdisability.(Mont,SPDiscussionPaper,2007,p.7)

CambodianDemographicHealthSurvey2014(CDHS)

The2014CDHSusestheWGshortsetofquestions.DataisanalysedusingtheWGdisabilityprevalencemodel1and325.

Usingdisabilityprevalencemodel1itidentifiesthat9.5%ofthepopulationagedfiveandolderhavesomeformofdisability.Thesurveyshowsthat5.1%ofthepopulationhavedifficultiesseeing,3.7%havedifficultieshearing,4.2%havedifficultieswalkingorclimbingstairs,and4%havedifficultiesrememberingorconcentrating.Only1.1%ofthepopulationhasatleastsomedifficultywithself-careand1.5%withcommunicating.Theprevalenceofdisabilityincreaseswithagefrom2%age5-14yearsold,to3%age15-34yearsold,to13%age35-59yearsold,and44%age60andover.(NationalInstituteofStatistics,DirectorateGeneralforHealth,andICFInternational,2015,p.42)

25SeeFigure2:WGquestionscut-offmodelstodeterminedisabilityprevalence

0,05% 0,07% 0,10%

0,14%

0,05% 0,08%

0,08% 0,11%

0,04% 0,07%

0,11%

0,16%

Age0-4 Age5-9 Age10-14 Age15-19

Total Female Male

34

Table9:CDHSdisabilitydata-totalanddisaggregatedbyage,basedonWGdisabilityprevalencemodel1

No

difficulty

Any

domain

Seeing Hearing Walking Concentrating Self-

care

Communicating

Total 90.5 9.5 5.1 2.8 3.7 4.2 1.1 1.5

Age

5-1498.2 1.8 0.3 0.5 0.3 0.7 0.6 0.5

Age

15-3496.5 3.5 1.0 1.0 0.8 1.6 0.3 0.8

Age

35-5986.8 13.2 6.6 2.7 4.4 5.2 0.7 1.2

Age

60+55.7 44.2 30.5 17.0 22.3 21.5 6.9 7.9

Usingdisabilityprevalencemodel3,theCDHSidentifies2.1%ofthetotalpopulationhaveadisability:0.7%ofthepopulationhavedifficultiesseeing,0.6%havedifficultieshearing,0.9%havedifficultieswalkingorclimbingstairs,and0.7%havedifficultiesrememberingorconcentrating.Only0.5%ofthepopulationhasatleastsomedifficultywithself-careand0.6%withcommunicating.Theprevalenceofdisabilityincreaseswithagefrom0.5%age5-14yearsold,to0.9%age15-34yearsold,to2%age35-59yearsold,and11.8%age60andover.(NationalInstituteofStatistics,DirectorateGeneralforHealth,andICFInternational,2015,p.42)

Table10:CDHSdisabilitydata-totalanddisaggregatedbyage,basedonWGdisabilityprevalencemodel3

Anydomain Seeing Hearing Walking Concentrating Self-

care

Communicating

Total 2.1 0.7 0.6 0.9 0.7 0.5 0.6

Age5-

140.5 0.1 0.1 0.1 0.2 0.2 0.5

Age

15-340.9 0.1 0.3 0.2 0.4 0.2 0.5

Age

35-592.0 0.4 0.4 0.9 0.5 0.3 0.6

Age

60+11.8 5.3 3.2 5.5 3.6 3.0 2.2

TheCDHSusesanolddisabilitymodulethatdiffersfromthe2016DHSdisabilitymodulediscussedinthechapteronDemographicHealthSurvey(DHS).Thefollowingsetofquestionsandmultiple-choiceanswershasbeenused.ThetablealsoindicatesinthelastcolumnonwhichWGquestiontheCDHSquestionsarebased.(NationalInstituteofStatistics,DirectorateGeneralforHealth,andICFInternational,2015,p.334)

35

Table11:CDHSdisabilitymodule

CDHS

question

number

Question AnswersBased

onWG26

21 Does(NAME)havedifficultyseeing,evenifwearingglasses

1=no2=somedifficulty3=alotofdifficulty4=cannotseeatall5=don'tknow

CF2

22 Does(NAME)havedifficultyhearing,evenifusingahearingaid?

1=no2=somedifficulty3=alotofdifficulty4=cannothearatall5=don'tknow

CF5

23 Does(NAME)havedifficultywalkingorclimbingsteps?

1=no2=somedifficulty3=alotofdifficulty4=cannotwalkorclimbatall5=don'tknow

EF-S

MOB_1

24 Does(NAME)havedifficultyrememberingorconcentrating?

1=no2=somedifficulty3=alotofdifficulty4=cannotremember/concentrateatall5=don'tknow

EF-S

COG_1

25 Does(NAME)havedifficultywithself-caresuchaswashingalloverordressing?

1=no2=somedifficulty3=alotofdifficulty4=cannotdoatall5=don'tknow

EF-S

SC_1

26 Becauseofaphysical,mentaloremotionalhealthcondition,does(NAME)havedifficultycommunicating,(forexampleunderstandingothersorothersunderstandinghim/her?

1=no2=somedifficulty3=alotofdifficulty4=cannotcommunicateatall5=don'tknow

EF-S

COM_1

Conclusion

ObservingthevaryingfiguresonnumberofpersonswithdisabilitiesidentifiedovertheyearsthroughdifferentcensusesandsurveysinCambodiademonstratethelackofconsistencywhenitcomestomeasuringdisabilityprevalence.Thisalsoappliestotheissueofchilddisabilitydata,whichisnotregularlycollected.TheCDHSof2014forinstancedoesnotcollectdataforchildrenbelowtheageoffiveyearsold.

26CF=ChildFunctioning;ES-F=ExtendedSetofQuestionsonFunctioning

36

ThefigurebelowdisplaysthefluctuationsindisabilityprevalenceinseveralcensusesandsurveysinCambodia.

Figure8:PercentageofpersonswithdisabilitiesinCambodiansurveys27

GIZprogrammeinitiatives

IDPoor

IDPoorisastandardisedpovertyidentificationprocessthatmakesuseofparticipatorymeasurestoreviewidentificationresults.TheMinistryofPlanning(MoP)startedin2005developingtheIDPoorsystemandGIZbeganwithitscontributionandsupportin2006.

IDPoorclassifiespoorhouseholdsintwopovertylevels:IDPoor1–verypoorandIDPoor2–poor.Theindicatorsarebasedoneasilyobservableandverifiableassetsandincome.Othervulnerabilityindicatorssuchaschronicdisease,disabilitywithWGquestions,schoolenrolmentandfinancialdebt.

IDPoordataisusedbygovernmentinstitutions,NGOs,UNandotherinstitutionstogiveidentifiedhouseholdsaccessto:(GIZ,2017)

> FreehealthcareservicesundtheHealthEquityFunds(HEF)> Cashtransfersforpregnantwomen> Schoolfeedingandscholarshipprogrammes

27Sources:(UNICEF,2013);(RGC,2013);(NationalInstituteofStatistics,DirectorateGeneralforHealth,andICFInternational,2015)

2,00 2,00

4,00

1,00

5,00

2,06

9,50

Socio-

Econ

omic

Survey1999

Demograph

ic

HealthSurvey

(DHS

)2000

Socio-

Econ

omic

Survey

2003-2004

Census200

8

Socio-

Econ

omic

Survey2010

Cambo

dian

Inter-Sensal

Popu

latio

nSurvey(C

IPS)

2013

Demograph

ic

HealthSurvey

(DHS

)2014

37

> Disasterrelief> Sociallandconcessions> Andmanyotherservices.

Therearedifferentquestionnairesforurbanandruralareas.

Currentlythequestionnaireforruralareascollectsdataonspecialhouseholdcircumstanceswhichcausereductioninlivingstandardamongstwhichthereis“Severelydisabledheadofhouseholdorspouseofheadofhousehold(unabletoearnincome,orspendsmoneyfortreatment)”.Itprovidestheobligationforthevillagecommitteetodebatewhethertheyproposetochangethepovertyclassificationofthehouseholdbasedontheassetandincomescoringsystem.

ThequestionsandindicatorsusedinthenewlydevelopedurbanIDPoorquestionnaireareadaptedfromtheWGquestions.Familieswithpersonswithdisabilitiesscoreextrapovertyscorewhenitaffectsincome.

Figure9:AssessmentofdisabilityinurbanIDPoorquestionnaire

AHCDMATandKhmerDMAT

Sincetheearly1990s,anumberofdifferentDMATshavebeenusedinCambodiatomonitorchilddevelopmentbutallofthemwerebasedonadaptingtheDenverIIDMAT.TheDMATshavebenusedbylocalNGOsintroducedbyINGOs.AlthoughtheDMATsusedhavemanythingsincommon,differencesprevailindefinitionsandimplementationandfeaturetheabsenceofstandardisedroutines.Themainshortcominghoweverwas

• Seeing• Hearing• Walking• Rememberingorconcentrating• Washingalloverordressing(self-care)• Communicating• Other(specify)

Thequestionnaireallowshousehold

memberstoreportonththreemostimportantfunctionaldifficulties:

• nodifficulty• somedifficulty• alotofdifficulty• Cannotdoatall

Inanextstep,theintervieweeshalldeterminehow

profoundthedifficultyisineachdomain:

38

thatinthepasttheDMATfeaturedmanymilestonesforwhichtheagewindowwasbasedonwesternperformancereferenceswhichdonotreflecttheCambodianreality.(AngkorHospitalforChildren&GIZ,2017)

TheDMAT,calledthebluebookDMAT,hasbeendevelopedbyINGOsassistingtherehabilitationsector.Itdoesnotstandardizethemilestoneassessmentandperformancecriteria(Pass-Fail)andusedinternationalperformancecharts,mainlybasedonDenverII.TheBlueBookisafamilystimulationguidewhichfeatureschilddevelopmentstimulationgameswhichcanbeappliedathometoencouragechildren(withorwithoutadelay)toacquirethespecificskillmeasuredineachmilestone.

In2007/8theAngkorHospitalforChildren(AHC)developedtheAHCDMAT.TheAHCDMATisalsobasedontheDenverDevelopmentScreeningToolII,andhasbeenadaptedtoCambodiancultureandnorms.In2015,GIZMuskokafacilitatedanassessmentof1,440childreninthreeCambodianruralandsemi-urbandistrictsaftertheassessmentmethodologyandthepassandfailcriteriawerestandardizedinanAHCDMATmanual.Thestudymadeitpossibletodocumenttheagerangeatwhichwell-nourishedruralandsemi-urbanKhmerspeakingchildrenareabletoperformeachofthe140milestonesoftheAHCDMAT.Theperformancechartdocuments(AngkorHospitalforChildren,2015):

> 38milestonesinthesocial/personaldomain> 37milestonesinthefinemotordomain> 33milestonesinthelanguagedomain> 32milestonesinthegrossmotordomain

SeethetablebelowforaverageagedifferencesperdomainandAnnex12–Differencesinperformance(Cambodia,MalawiandDenverII)forindividualmilestoneperformancedifferencesbetweencultures.

Table12:Averagedifference28inage-windowofperformancebydomain(cDMAT1,Malawi&DenverII)

Domain Averagemonthdifferences

Khmer-Malawi

Averagemonth

differences

Khmer-DenverII

Social -2.67 2.34FineMotor 0.30 3.98Language -1.23 4.92Grossmotor -1.13 1.23Overallaverage -1.18months 3.11months

Thestudyalsocomparedtheinter-observerreliability.Inlate2016andearly2017GIZinCambodiaheldworkshopstofurtherimprovethereliabilityofthosemilestoneswithpoorinter-observerreliabilitybyscrutinizingtheassessmentmethodologyand28AverageofdifferencesinPASSP25%,P75%andP90%forcommonmilestones

39

performancecriteria.Theorderofthemilestones,alsocalledthehierarchy,wasadaptedtoreflecttheperformancecurveinKhmerchildren.Fourmilestoneswereabandonedbecausetheyareofsimilarage-windowperformance(AngkorHospitalforChildren&GIZ,2017).ThelatestKhmerDMATconsistof136milestones:

> 36milestonesinthesocial/personaldomain> 34milestonesinthefinemotordomain> 35milestonesinthelanguagedomain> 31milestonesinthegrossmotordomain

BasedontheperformancechartsoftheKhmerDMATwhen100%ofthechildreninthatage-cohortpassthemilestoneandonselectingveryreliablemilestones,acommunity-basedDMAT(CB-DMAT)hasbeendevelopedtobeusedatcommunityorhealthcentrelevel.TheCB-DMATscreenschildrenagedninetosixtymonthsoldondevelopmentaldelays.Thescreeningisdonewithonlyfourquestions(1social,1finemotor,1socialand1grossmotor)foreachofthesixagebrackets:(i)9to17months,(ii)18to23months,(iii)24to35months,(vi)35to47months,(v)48to59months,and(vi)60monthsandolder.TheCB-DMATisaccessibleinannex10.Whenachildcannotperformthesemilestonesintheiragecategory,theyhaveadevelopmentaldelayandshouldbereferredtoahospitalforfullDMATassessmentandmedicalcheck-up.

AphysiotherapistinahospitalcanconducttheKhmerDMATonchildrenexpectedwithdevelopmentdelays.Amedicaldoctorshouldexaminethechildrenwithdocumenteddelaysinordertoruleoutunderlyingdiseasesandcomeup,indialoguewiththecaretakers,withaninterventionplan.Thephysiotherapistcanteachtheparentsonhowtostimulatetheirchildandreferto.CBRprogrammesforhomeinterventions,basedonthefamilytrainingmanualforchilddevelopmentstimulation.Parentsandcaregiverscandotheactivitieswiththeirchildrenathome.(Montaufray,2017)

PhysicalScreeningofchildrenwithdisabilities

TheGIZMuskokaprogrammedevelopedphysicalscreeningprotocolsforhealthpersonnelincooperationwithHandicapInternational’sMotherandChildProgrammeinCambodia:

> ThePhysicalScreeningforNewborns(1–28days):NationalProtocol(HI&GIZ,2017),and

> thePhysicalScreeningforYoungChildren(1month–5years):NationalProtocol(HI&GIZ,2017).

Screeningandearlydetectionafterbirthandduringearlychildhoodisaveryimportantsteptopreventimpairmentsanddisabilityinthefuture.Theabove-mentioned

40

documentsaredevelopedfornursesandmidwivesinhealthcentresorhospitalsandotherhealthprofessionalswhoaretrainedtousethescreeningprotocols.Itisthegoalofthescreeningprotocolsthatearlydetectionleadstoearlyintervention,whichwillreducetheimpactofimpairmentsafterbirth.Onceanimpairmentorconditionisidentified,thechildandtheparentsmustbereferredtoaphysicianatasecondaryhealthfacility.

Asdiscussedabove,physicalscreeningcanhelptoidentifychildrenwithdisabilitiesearlyonwards,whatiscrucialtoprovideearlysupportdependingonthediagnosis.However,intermsofdatacollection,therearelimitationsasonlychildrenwithdisabilitieswillbepointedout,notnecessarilyallchildrenwithfunctionallimitations.Thus,collecteddatacanbeimportantindicationsofearlychildhooddisabilityprevalencerates,butdoesnotprovideafullpictureofallchildrenwithfunctionallimitations.

Conclusion

GIZinCambodiahascontributedtothedevelopmentofscreeningandassessmenttoolsforchildrenwithdisabilitiesanddevelopmentaldelaysuptotheageofsixyears.BothphysicalscreeningtoolsandtheKhmerDMATcanassistinprovidingnecessarydatatotriggerearlyintervention.TheCommunityBasedKhmerDMAThasthepotentialtoreachawiderangeofpeopleandsupportchildren’sdevelopment.TheculturalsensitiveKhmerDMAThasthepotentialtoidentifychildrenwithimpairmentsbelowtheageoftwoyearsoldandhasthepotentialtofillupthegapthattheWGquestionsleaveopen.

41

Indonesia

Nationallegalguidelines

UNCRPD

TheGovernmentofIndonesia(GOI)ratifiedtheUNCRPDon30thNovember2011(OHCHR,2017).Lawnumber19of2011ontheRatificationoftheConventionontheRightsofPersonswithDisabilitiesintroducedtheUNCRPDintothenationallegalsystem(GOI,2011).

Law8/2016onPersonswithDisability

Justrecently,theGOIpublishedanewlawonpersonswithdisabilities.ThenewlawisbasedontheprinciplesoftheUNCRPDandfollowsthesamedefinitionfordisability.Thelawstatesthatpersonswithdisabilitieshavetherighttobecountedandregisteredaspersonswithdisabilitieswithalltheircharacteristicsandmustreceivea‘disabilitycard’.(GOI,2016)

Data

ReportstotheCRPD

TheGOI’sfirstreporttotheCRPDstatesthatIndonesiastillfaceschallengescollectingqualitydataofpersonswithdisabilities,duetodifferentdatacollectionmethods.Currentlyseveralgovernmentinstitutionsarecollectingsectoraldata.Differentdefinitionsofdisabilityaswellasdifferentmethodsleadtovaryingresults.Thegraphicbelowillustratesthehugedifferencesinthetotalnumberofpersonswithdisabilitiesidentified.(GOI,2016,pp.40-41)

42

Figure10:NumberofpersonswithdisabilitiesinsurveysinIndonesia29

Basedondatafromthe2015SUPAS,theGOI’sreport,estimatesthat1.904.298children–905.336(2,46%)girlsand998.962(2,58%)boys–aged2-17yearsoldor2,52%ofthetotalpopulationhaveadisability.(GOI,2016,p.38)

Figure11:Estimatedpercentageofchildrenwithdisabilitiesage2-17inIndonesia

TheIndonesianShadowReportontheimplementationoftheUNCRPDpublishedbytheIndonesianDisabilityConventionTeam30confirmsthedatadilemmaforIndonesia.Theshadowreportaddsthatgovernmentinstitutionsarereluctanttoallocatesufficientfundsfordatacollectiononpersonswithdisabilities;thatDPOsarenotinvolvedindatacollectionandgovernmentofficersoftendonotknowhowtoapproachpersonswith

29SeeGOI,2016,p.41–nodisaggregatedfiguresavailable30SixmemberDPOs:GERKATIN,BILIC,SEHATI,PERTUNI,SIGAB,andSAPDA

11.580.1177.126.117

24.000.000

6.008.661

21.107.575

MinistryofSocialAffairs(MoSA)2010

MinistryofManpoweradTransmigration(MoMT)2010

InternationalLabour

Organization(ILO)2010

NationalSocio-EconomicSurvey(SUSENAS)2012

NationalIntercensal

PopuationSurvey(SUPAS)2015

7,732,2

27,52

0,74

3,693,537,347,59

39,65

VisuallyImpaired(7,73%)

HearingImpaired(2,2%)

Walking/climbsteps(27,52%)

Movinglimbsand/orfingers(0,74%)

Remembering/concentrating(3,69%)

Emotional(3,53%)

Communication(7,34%)

Inabilitytoselfcare(7,59%)

Multipledisabilities(39,65%)

43

disabilities;andthatgovernmentinstitutionsarenotawareabouttheimportanceofdataonpersonswithdisabilitiesfordevelopingappropriateprogrammes.(DisabilityConventionTeam,2017)

NationalIntercensalSurvey(SUPAS)2015

Thedisabilitysectionofthe2015SUPASquestionnaireconsistsofeightquestions.ThequestionsarebasedontheWGshortsetofquestion31withadditionalquestionsandadaptedmultiple-choiceanswers.Thequestionsareappliedtothepopulationagedtwoyearsandolder:(NationalInstituteofStatisticsIndonesia,2017,p.161)

Table13:SUPAS2015disabilityquestionnaire32

No Question Answers

1Does(NAME)havedifficultyseeing?

Yes,cannotseeatall.

Yes,alotofdifficulty.

Yes,somedifficulty

No,nodifficulty.

2Does(NAME)havedifficultyhearing?

Yes,cannothearatall.

Yes,alotofdifficulty.

Yes,somedifficulty

No,nodifficulty.

3

Does(NAME)havedifficultywalkingorclimbingstair?

Yes,needsfullassistancebyotherpeople.

Yes,usesassistivedeviceandneedshelpbyothers.

Yes,evenwhenusingassistivedevice.

Yes,notusingassistivedevice.

No,nodifficulty.

4

Does(NAME)havedifficultyusinghandsorfingers?

Yes,cannotusehandsorfingers.

Yes,alotofdifficulty.

Yes,somedifficulty

No,nodifficulty.

6

Does(NAME)havebehaviouraloremotionaldisorders?

Yes,alwaysexperiencesdifficulties.

Yes,oftenexperiencesdifficulties.

Yes,experiencessomedifficulty

No,nodifficulty.

7

Does(NAME)havedifficultyspeakingand/orunderstanding/communicatingotherpeople?

Yes,cannotnotatallunderstand/beunderstood/communicate.

Yes,alotofdifficulty.

Yes,somedifficulty

No,nodifficulty.

8

Does(NAME)havedifficultywithself-care(likewashing,eating,dressing,defecating,urinating)?

Yes,cannotatalltakecareofitself.

Yes,alotofdifficulty.

Yes,somedifficulty

No,nodifficulty.

Thefinalreportonthedatacollectiondisaggregatesthedataongenderaswellasurbanandruralplaceofliving.Thereportfeaturesnationaldataandperprovince.(National

31See:ShortSetofQuestions32Translatedbyauthor

44

InstituteofStatisticsIndonesia,2015,pp.62-203)Thereportdoesfeaturestherawdataonlyanddoesnotexpressstatisticaldatainpercentages.

GIZprogrammeinitiatives

TheGIZSocialProtectionProgramme(SPP)providestechnicalexpertise,capacitydevelopment,processfacilitation,andopportunitiesforSouth-SouthdialoguefortheMinistryofNationalDevelopmentPlanning(BAPPENAS)andtheMinistryofSocialWelfare(MoSA)intheinterventionareasofsocialhealthinsurance,inclusionofpersonswithdisabilities,socialassistance,andfinancialinclusionofpersonswithdisabilities.(GIZ,2017)

SPPreceivesdataonpersonswithdisabilitiesfromMoSA.Thepublication‘MinistryofSocialWelfareinNumbers’(MinistryofSocialWelfare,2012)doesnotexplainhowitcollectsorprocessesdata,norareanydefinitionsstated.

Conclusion

Thesituationofqualitydataonpersonswithdisabilitiesdoesunfortunatelynotfeatureanystandardisedtoolthatisbasedoninternationalstandards.Individualgovernmentinstitutionsaregatheringtheirowndatawithlimitedscope.Datasetsoftheinstitutionsarenotcompatibleanddonotallowcomparison.ToimprovethesituationandprovidequalitydatafortheneedsofSPP,IndonesiashouldadaptthemethodsofDHSorMICS.

45

Tanzania

UNCRPD

TheGovernmentofTanzania(GOT)hasratifiedtheUNCRPDon10thNovember2009.(OHCHR,2017)NoreportoftheGOTtotheCRPDisavailableonthewebsiteofOHCHR33.

Data

TheTanzania2008DisabilitySurveycollecteddataonthepopulationwithadisabilityage7andabove.ThesurveyincorporatestheWGshortsetofquestionsalongadditionalquestionsets.

Theresultsforthepopulationage7to19yearsoldareasfollowedinpercent:(NationalBureauofStatisticsTanzania,2008,p.44)

Table14:Tanzania2008DisabilitySurvey

Tanzania Mainland Zanzibar Total

Rural Urban Rural Urban Rural Urban

M F T M F T M F T M F T M F T M F T M F T

7-9 3.0 2.6 2.8 5.4 1.6 3.6 2.9 2.6 2.8 5.5 1.6 3.7 4.6 2.2 3.5 3.2 1.7 2.3 3.6 2.4 3.0

10-

14

3.9 3.6 3.8 3.6 1.5 2.4 3.9 3.6 3.8 3.7 1.5 2.5 3.7 3.1 3.4 0.8 1.6 1.2 3.9 3.1 3.5

15-

19

4.0 3.0 3.5 3.1 6.2 4.7 4.0 2.9 3.5 2.9 6.4 4.8 2.0 5.7 3.9 7.5 1.6 4.1 3.7 3.9 3.8

GIZprogrammesinitiatives

GIZisinvolvedinTanzania’sdevelopmentofthehealththroughtheTanzanianGermanProgrammetoSupportHealth(TGPSH)since25years.TGPSH’smissionistodeliverbetterservicesforbetterhealthinTanzania.Thisshallbeachievedbyincreasing(i)accesstoservicesforthepoor,(ii)privateinvestmentinhealth,(iii)servicesformarginalizedgroups,(iv)districthealthmanagement,(v)hospitalmanagement,and(vi)maternalandnew-borncare.(GIZ,2016,p.7)33Seehttp://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx

46

Sincesevenyearsasub-programofTGPSHcalledImprovementofMaternalandChildHealth(IMCH)focusesoncapacitybuildingandstructuraldevelopmentofhealthcareatregionalanddistrictlevel.34TheNoBabyLeftOutinitiativeinitiatedbyBMZandGIZfocusesonon-the-jobtrainingforhealthpersonneltoachievethereductionofnewbornmortalityrates.TheinitiativedevelopedaNewbornTriageChecklist35toassessthenewbornchild(i)shortlyafter,(ii)4-8hoursafterbirth,and(iii)within20-24hoursafterbirth.Thechecklistprovidesspacesfortakingdowndataonthe(i)timeoftheassessment,temperature,respirationrate,feeding,movements,andweight.(GIZ,2013)

Conclusion

Forthepurposeofimprovingmaternalandchildhealth,theDMATapproachofcollectingdataonchildrenfromagezerotosixyearsoldisverybeneficial.StatisticaldatalikeforinstancetheWGquestionsarelessbeneficialforthispurpose.

34BasedonquestionerandSkypeconferencecall35TheNewbornTriageChecklistisaccessibleinannex11

47

Conclusionandrecommendations

Manycountrieshavecollecteddataontheirpopulationthroughcensusesandsurveys.OvertheyearsthequestionnaireshavebeenexpandedandadaptedtonewhumanrightsstandardsenshrinedintheUNCRCandUNCRPD.However,dataonchildrenwithdisabilitiesisstillscatteredandnotcollectedinacoherentmanner.(UNICEF,2013,pp.63-68)Childrenareoverlookedifsurveysarenottargettowardsthem.Childrenwithintersectingrisksofexclusionlikechildrenwithdisabilitiesfromalowsocio-economicbackgroundorgirlswithdisabilitiesareatevenhigherrisktobeoverseen.(UNESCO,2015,pp.22-27).Surveysthatfeaturequestionnairesthattargetchildren36havethepotentialtogeneratebetterresultsonthesituationofchildrenwithdisabilities.(WashingtonGrouponDisabilityStatistics,2017)(Cappa,CollectingDataonChildDisability,2014).

Collectingdataonchildrenreliesontheresponsesbyproxies,whichareusuallytheirparentsorcaregivers.Sincesurveysandcensusesaredesignedtobeself-reportingtools,manyparentsandcaregiversmightfacechallengestocorrectlyreportduetoalackofknowledgeonnorms,standards,expectationsaboutchilddevelopment,children’srights,etc.Eventhoughparentsandcaregiversareinmanycasesverywellawareofthechallengesandfunctionallimitationstheirchildrenface,theymightnotcorrectlyreportbackincensusesandsurveys.Thisdilemmabecomesevenbiggerwhenitcomestocollectingdataonchildrenbelowtheageoftwoyearsoldastheyinallcasesrelyontheanswersofproxies.

36SeesectiononWGChildFunctioningModule

Table15:Toolsforprojectlevel

Tool Methodology Description Advantages Disadvantage

WashingGroupDisabilityQuestionsforadultsandchildren

Functionalassessment

Idealforsurveysand

censuses.

Setsofquestionstobeaddedto

populationcensusesorsurveystocollect

dataondisability.Eachsethasbeen

designedtoidentifythosewhoareat

greaterriskthanthegeneralpopulation

forparticipationrestrictionsbecauseof

thepresenceofdifficulties.

TheWGprovidesquestionssetsfor

childrenage2-4yearsold(16questions),

children5-17yearsold(24questions)and

adults(6or37questions).

1. Adultshortsetquestionnaire(6

questions)canbeeasilyinsertedin

existingsurveysandcensuses.

2. Deliverinternationallycomparable

data.

3. Takesthepresenceofassistivedevices

intoaccount

4. Allowstodevelopagraphwiththe

continuumofdisability*

1. ‘Somedifficulty’,‘alotofdifficulty’

dependsverymuchonpersonal

perception/expectationsandis

verychallengingtostandardise.

2. Childquestionnaireshavemany

questions

3. Thephrase‘comparetochildrenof

thesameage’canleadto

misleadingresultsasnotallchildren

developatthesamespeed.

4. Donotcapturechildrenuntilthe

ageoftwoyearsold.

PhysicalScreeningToolsforchildrenbelow6

Medicalassessmentby

nurse,midwife,later

confirmedbymedical

doctortrainedonreferral

pathwaysandservice

deliverydirectory

Idealinmedicalsetting

forearlyidentification

andinterventionof

childrenwithdisabilities

Twomedicaltoolsforearlydetectionand

earlyintervention:neonateand1-60

months.

Amedicalbodycheckisconducted,

focussingontheidentificationofpotential

physicalandsensorialimpairments

Positivelyscreenedbynursesand

midwivesarereferredtoadoctoratthe

Referralhospitaltoconfirmimpairment

andprofessionallyreferforfurther

diagnosis/intervention

1. Captureschildrenageupuntiltheage

ofsixyearsold.

2. Physicalscreeningtoolfacilitatesearly

detection,triggersearlyreferral,

medicaldiagnosisandearlymedical/

physicalrehabinterventions

(secondaryandtertiaryprevention).

1. Basedonmedicalmodel:fixingthe

individualbymedicalorphysical

rehabintervention.

2. Onlytrainedmedicalpersonnelcan

maketheassessment

3. Doesnotcapturefunctional

limitationsthataretheresultof

impairments.

4. Nocontinuumofdisabilities

5. Doesnotdeliverpopulationdata.

49

Developmentalmilestonesassessmenttools(DMAT)forchildrenbelow6

Functionalassessment

Idealinhealthand(pre-)

schoolsettingsforearly

identificationand

interventionofchildren

withdisabilities

Tooltomonitorachild’sdevelopmentand

detectdevelopmentaldelays.Milestones

areage-specificachievementsanaverage

childcanbeexpectedtodemonstrate.

Normally,differentdomainsaretakeninto

consideration(i.e.motor,socialand

language/cognitiveskills).

FULLDMAT=136-140culturally

appropriatemilestones

Community-BasedDMAT=4age-specific

milestoneperformancequestions

indicatingdevelopmentaldelays,

triggeringreferralforfullDMATfor

childrenof9m,18m,24m,36m,48mand

60m

1. Forchildrenupuntilagesixyearsold.

2. Setacultural-specificbenchmarkfor

childdevelopmentwhichcanbeused

asareference(ratherthanobtaining

subjectiveimpressionofcaretakers)

3. Canbeusedtoidentifychildrenatrisk

fordisabilities

4. Culturallyappropriateresearchleadsto

developmentreferencecharts/

benchmarks

5. Linkedtoearlyintervention

(developmentstimulationexercises)

6. Canbeusedforchildrenbelow2years

7. CB-DMATisfast(2min),idealfor

screeningpurposeswiththepossibility

tocontrolthenumberofreferralsby

changingdelaytrigger(P90%vsP100%

ofmonthcohort)

8. CB-DMATcanbeadministeredinCBR

programmes.Delaystriggermedical

assessmentandtreatment/

stimulationexercises(rehab)

1. Culturallysensitivedependingon

thestimulationsintheenvironment

andthechild’spersonality(urban

fasterthanruralchildren)

2. Schoolenrolmentisconfounding

factorformanymilestones

3. Resourceintensiveasinitial

researchneedstobecarriedoutto

establishlocalreferencechartsfor

developmentalmilestone

performancereferences

4. FullDMATistimeconsuming(20-30

min):physiotherapistor(pre-)

schoolteacher

5. Nocontinuumofdisabilities

6. Donotdeliverpopulationdata.

7. Mustbeculturallyadapted.

WHODAS2.0 Functionalassessmentfor

adults

Idealfordisabilityspecific

surveysandcensuses.

Assessmenttoolthatmeasureshealthand

disabilityover6domains:

i. cognition,

ii. mobility,

iii. self-care,

iv. gettingalong,

v. lifeactivities,and

vi. participation.

1. BasedonICF=socialmodel

2. Measuresimpactofdisabilityon

qualityoflife/possibilitytoparticipate

3. Measuresindirectlytheimpactofthe

(barrier-free)environmentandof

personalfactors

4. Disabilityspectrum:Populationdata

whenrandomsamplingisapplied(all

personsincluded)allowingto

differentiatebetweenpeoplewithand

withoutcertaintypesofdisabilities

1. Nomoduleforchildren(<18years).

‘Somedifficulty’,‘alotofdifficulty’

dependsverymuchonpersonal

perception/expectationsandis

verychallengingtostandardise.

2. Resourceintensive(funding,

personnel,time,…),especially

whenrandomsamplingisapplied

3. Noidentification/selection

mechanismtoincludeonlypersons

withdisabilities.

4. ‘Moderate’,‘Severe’dependsvery

muchonpersonalperception/

50

expectationsandisverychallenging

tostandardise.

Table16:Datasourcesforcountrylevelandmulti-sectoralprogrammes

Tool Methodology Description Advantages Disadvantage

MultiIndicatorClusterSurvey(MICS)

Populationsurvey.

Includesfunctional

assessmentforchildren

age2andabove.

Populationsurveythatfeaturesmodule

ondisabilityusingtheWGquestions.

Modulesforchildrenaged2-4yearsold

andaged5-17yearsoldareavailable.

Deliversinternationallycomparabledata. Seetablebeforecomments:on‘Washing

GroupDisabilityQuestionsforadultsand

children’

DemographicHealthSurvey(DHS)

Populationsurvey.

Includesfunctional

assessmentforchildren

(age5-17yearsold)and

adults.

Populationsurveythatfeaturesmodule

ondisabilityusingtheWGquestions.

Deliversinternationallycomparabledata. Seetablebefore:commentson

‘WashingGroupDisabilityQuestionsfor

adultsandchildren’

ModelDisabilitySurvey(MDS)

Populationsurveywith

specialfocusonadult

personswithdisabilities.

Includesfunctional

assessmentforadults.

PopulationsurveybasedonICF.Onlyfor

adultsage18andabove.

1. BasedonICF=socialmodel

2. Measuresimpactofdisabilityon

qualityoflife/possibilitytoparticipate

3. Measuresindirectlytheimpactofthe

(barrier-free)environmentandof

personalfactors

DisabilityspectrumPopulationdatawhen

randomsamplingisapplied(allpersons

included)allowingtodifferentiatebetween

peoplewithandwithoutcertaintypesof

disabilities

Nomoduleforchildrenyet.

*TheICFisuniversalbecauseitcoversallhumanfunctioningandtreatsdisabilityasacontinuumratherthancategorizingpeoplewithdisabilitiesasaseparategroup:

disabilityisamatterofmoreorless,notyesorno.However,policy-makingandservicedeliverymightrequirethresholdstobesetforimpairmentseverity,activity

limitations,orparticipationrestriction.(

Whichtooltouse–theWGquestions,aDMATapproachoranothertool–dependsvery

muchonthenatureoftheprojectandthegoalsitwantstoachieve.Itistherefore

importanttoanalysethepurposeofthedataneedstobegathered.Ifthepurposeis

clear,onecanstarttochooseasuitabletoolandmethodologytocollectdata.

MuskokainCambodiaandIMCHinTanzaniafocusonmaternalandchildhealthand

developinterventionsandprogrammestoimprovethesituationofmothersand

children.Bothprojectsarelocatedinthemedicalsectorandimprovethesituationof

newborns.DMATsandfunctionalassessmenttoolsareagoodchoiceforthispurpose.

DatasetsbasedonWGquestionsareasecondchoice.CulturallyadaptedDMATsand

physicalscreeningprotocolsthattriggerearlyinterventionwherenecessaryaremuch

moreusefulforchildrenandparents.

TheGIZSPPinIndonesiahasaslightlydifferentfocus.Itlooksatimprovingthesocial

securitysystemandmakingitmoreinclusiveofpersonswithdisabilities.Theapproachis

togivetechnicaladvicetoBAPPENASandMoSA.Herequalitystatisticaldatabasedon

toolsusingWGquestionswouldbeagreatassettosupporttheGOIindevelopingmore

efficientsocialsecurityinterventions.However,whenitcomestothedirect

identificationofchildrenwithdisabilitiesandverificationiftheyareeligibleforsocial

protectionothertoolsandmethodologiesareappropriate.First,DMATsaretheright

tooltoidentifychildrenwithdisabilitiesandassesstheirfunctionallimitations.Secondly,

administrativedatafromschoolsandcivilregistrationofficescanbeassessedtocross-

checkifallchildrenareinschool.Childrenwithdisabilitiesareveryoftennotenrolledin

educationanddonotattendschoolsandarethereforeeasytobeidentified.

Programmesthatarenotsurewhichdatawouldbemorebeneficialcanaccesstheir

needsusingthetwin-track-approachtodisability.

Twin-TrackApproach

ProjectsandinterventionscanusetheTwin-TrackApproachmodeltoassesswhichkind

ofdatatheyneedtoachievetheirgoals.

52

Figure12:Twin-TrackApproach

DMATsandphysicalscreeningtoolswilldeliverdatawhichismoreusefuliftheprojectis

closertotrackoneoftheTwin-TrackApproach.DMATresultsgivetheprojectthe

opportunitytoproducecustomisedandindividualsolutionstoovercomebarriersand

increasetheparticipationandwellbeingofachild.

Shouldtheprojectworkmoreondisabilitymainstreaminginsociety(track2)than

statisticaldatalikeWGquestions,WHODAS2.0,DHSandMICSaremoreuseful.

• Doestheprojectprovidecustomisedinterventionsforindividuals,e.g.medicalinterventionsorprovisionofsupportivelearningdevices?

Track1–disability

specific

empowerment

• Doestheprojectworkonidentifyingandovercomingbarriersinsocietythatpersonswithdisabilitiesface,e.g.physicalaccessibility,communication,attitude,legislation,andincludingpersonswithdisabilitiesintoallaspectsofdevelopment?

• Doestheprojectworkonpolicyreform,e.g.socialprotection,labour,oreducation?

Track2–disability

mainstreaming

53

Annexes

Annex1–ExampleICFuse

Figure13:ICFexample1

Figure14:ICFexample2

54

Figure15:ICFexample3

55

Annex2–WGShortsetofQuestions

The Washington Group Short Set of Questions on Disability

The next questions ask about difficulties you may have doing certain activities because of a HEALTH PROBLEM. 1. Do you have difficulty seeing, even if wearing glasses?

a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

2. Do you have difficulty hearing, even if using a hearing aid? a. No – no difficulty

b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

3. Do you have difficulty walking or climbing steps?

a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

4. Do you have difficulty remembering or concentrating?

a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

5. Do you have difficulty (with self-care such as) washing all over or dressing?

a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

6. Using your usual (customary) language, do you have difficulty communicating, for example understanding or being understood?

a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

56

Annex3–WGExtendedQuestionSetonFunctioning

1

Washington Group - Extended Question Set on Functioning (WG ES-F)

(Version 9 November 2011)

(Proposal endorsed at the joint Washington Group / Budapest Initiative Task Force Meeting,

3-5 November 2010, Luxembourg) Preamble to the WG ES-F: Text provided in [ ] may be used at the discretion of the country / survey organization. Interviewer, read: “Now I am going to ask you some [additional] questions about your ability to do different activities, and how you have been feeling. [Although some of these questions may seem similar to ones you have already answered, it is important that we ask them all.]”

VISION VIS_1 [Do/Does] [you/he/she] wear glasses?

1. Yes 2. No 7. Refused 9. Don’t know

VIS_2 [Do/Does] [you/he/she] have difficulty seeing, [If VIS_1 = 1: even when wearing

[your/his/her] glasses]? Would you say… [Read response categories] 1. 1. No difficulty 2. 2. Some difficulty 3. 3. A lot of difficulty 4. 4. Cannot do at all / Unable to do 7. 7. Refused 9. 9. Don’t know

[Note: This item is Question 1 in the WG Short Set.] Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

57

2 OPTIONAL Vision questions: VIS_3 [Do/does] [you/he/she] have difficulty clearly seeing someone’s face across a room [If VIS_1 = 1: even when wearing [your/his/her] glasses]? Would you say… [Read response categories] 1. 1. No difficulty 2. 2. Some difficulty 3. 3. A lot of difficulty 4. 4. Cannot do at all / Unable to do 7. 7. Refused

9. 9. Don’t know

VIS_4 [Do/does] [you/he/she] have difficulty clearly seeing the picture on a coin [If

VIS_1 = 1: even when wearing [your/his/her] glasses]? Would you say… [Read response categories]?

1. 1. No difficulty 2. 2. Some difficulty 3. 3. A lot of difficulty 4. 4. Cannot do at all / Unable to do 7. 7. Refused 9. 9. Don’t know [Note: Countries may choose to replace “the picture of a coin” with an equivalent item.]

HEARING HEAR_1 [Do/Does] [you/he/she] use a hearing aid? 1. 1. Yes 2. 2. No 7. 7. Refused 9.9 9. Don’t know Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

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3 HEAR_2 [Do/Does] [you/he/she] have difficulty hearing, [If HEAR_1 = 1: even when using a

hearing aid(s)]? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

[Note: This item is Question 2 in the WG Short Set.]

OPTIONAL Hearing questions: HEAR_3 How often [do/does] [you/he/she] use [your/his/her] hearing aid(s)? Would you

say… [Read response categories]

1. All of the time 2. Some of the time 3. Rarely 4. Never 7. Refused 9. Don’t know

HEAR_4 [Do/does] [you/he/she] have difficulty hearing what is said in a conversation with

one other person in a quiet room [If HEAR_1 = 1: even when using [your/his/her] hearing aid(s)]? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

HEAR_5 [Do/does] [you/he/she] have difficulty hearing what is said in a conversation

with one other person in a noisier room [If HEAR_1 = 1: even when using [your/his/her] hearing aid(s)]? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

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4

MOBILITY MOB_1 [Do/Does] [you/he/she] have difficulty walking or climbing steps? Would you

say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 9. Refused 9. Don’t know

[Note: This item is Question 3 in the WG Short Set.]

MOB_2 [Do/does] [you/he/she] use any equipment or receive help for getting

around?

1. Yes 2. No (Skip to MOB_4.) 7. Refused (Skip to MOB_4.) 9. Don’t know (Skip to MOB_4)

MOB_3 [Do/does] [you/he/she] use any of the following?

Interviewer: Read the following list and record all affirmative responses:

1. Yes 2. No 7. Refused 9 Don’t Know A. Cane or walking stick? B. Walker or Zimmer frame? C. Crutches? D. Wheelchair or scooter? E. Artificial limb (leg/foot)? F. Someone’s assistance? G. Other (please specify):

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

60

5 MOB_4 [Do/Does] [you/he/she] have difficulty walking 100 meters on level ground, that

would be about the length of one football field or one city block [If MOB_2 = 1: without the use of [your/his/her] aid]? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do (Skip to MOB_6) 7. Refused 9. Don’t know

[Note: Allow national equivalents for 100 metres.]

MOB_5 [Do/Does] [you/he/she] have difficulty walking half a km on level ground, that

would be the length of five football fields or five city blocks [If MOB_2 = 1: without the use of [your/his/her] aid]? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

[Note: Allow national equivalents for 500 metres.]

MOB_6 [Do/Does] [you/he/she] have difficulty walking up or down 12 steps? Would you

say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

If MOB_2 = 2 “No”, skip to next section. If MOB_3 = D “Wheelchair”, skip to next section. Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

61

6 MOB_7 [Do/Does] [you/he/she] have difficulty walking 100 meters on level ground, that

would be about the length of one football field or one city block, when using [your/his/her] aid? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do (skip MOB_8) 7. Refused 9. Don’t know

MOB_8 [Do/Does] [you/he/she] have difficulty walking half a km on level ground, that

would be the length of five football fields or five city blocks, when using [your/his/her] aid? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

COMMUNICATION COM_1 Using [your/his/her] usual language, [do/does] [you/he/she] have difficulty

communicating, for example understanding or being understood? Would you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

[Note: This item is Question 6 in the WG Short Set.]

COM_2 [Do/does] [you/he/she] use sign language?

1. Yes 2. No 7. Refused 9. Don’t know

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

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7

COGNITION (REMEMBERING) COG_1 [Do/does] [you/he/she] have difficulty remembering or concentrating? Would

you say… [Read response categories]

1. No difficulty 2. Some difficulty 3. A lot of difficulty 4. Cannot do at all / Unable to do 7. Refused 9. Don’t know

[Note: This item is Question 4 in the WG Short Set.]

OPTIONAL Cognition questions: COG_2 [Do/does] [you/he/she] have difficulty remembering, concentrating, or both?

Would you say… [Read response categories]

1. Difficulty remembering only 2. Difficulty concentrating only (skip to next section) 1. Difficulty with both remembering and concentrating 7. Refused 9. Don’t know

COG_3 How often [do/does] [you/he/she] have difficulty remembering? Would you

say… [Read response categories]

1. Sometimes 2. Often 3. All of the time 7. Refused 9. Don’t know

COG_4 [Do/does] [you/he/she] have difficulty remembering a few things, a lot of things,

or almost everything? Would you say… [Read response categories]

1. A few things 2. A lot of things 3. Almost everything 7. Refused 9. Don’t know

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

63

8

SELF-CARE SC_1 [Do/does] [you/he/she] have difficulty with self care, such as washing all over or dressing? Would you say… [Read response categories] 1. 1. No difficulty 2. 2. Some difficulty 3. 3. A lot of difficulty 4. 4. Cannot do at all / Unable to do 7.7. 7. Refused 9. 9. Don’t know [Note: This item is Question 5 in the WG Short Set.]

UPPER BODY UB_1 [Do/Does] [you/he/she] have difficulty raising a 2 liter bottle of water or soda from waist to eye level? Would you say… [Read response categories] 1. 1. No difficulty 2. 2. Some difficulty 3. 3. A lot of difficulty 4. 4. Cannot do at all / Unable to do 7. 7. Refused

9. 9. Don’t know

UB_2 [Do/Does] [you/he/she] have difficulty using [your/his/her] hands and fingers, such as picking up small objects, for example, a button or pencil, or opening or closing containers or bottles? Would you say… [Read response categories] 1. 1. No difficulty 2. 2. Some difficulty 3. 3. A lot of difficulty 4. 4. Cannot do at all / Unable to do 7.7. 7. Refused 9. 9. Don’t know Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

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9

AFFECT (ANXIETY AND DEPRESSION)

Proxy respondents may be omitted from this section, at country’s discretion. Interviewer: If respondent asks whether they are to answer about their emotional states after taking mood-regulating medications, say: “Please answer according to whatever medication [you were/he was/she was] taking.” ANX_1 How often [do/does] [you/he/she] feel worried, nervous or anxious? Would you

say… [Read response categories]

1. Daily 2. Weekly 3. Monthly 4. A few times a year 5. Never 7. Refused 9. Don’t know

ANX_2 [Do/Does] [you/he/she] take medication for these feelings?

1. Yes 2. No (If “Never” to ANX_1 and “No” to ANX_2, skip to DEP_1.) 7. Refused 9. Don’t know

ANX_3 Thinking about the last time [you/he/she] felt worried, nervous or anxious, how

would [you/he/she] describe the level of these feelings? Would [you/he/she] say… [Read response categories]

1. A little 2. A lot 3. Somewhere in between a little and a lot 7. Refused 9. Don’t know

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

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10 DEP_1 How often [do/does] [you/he/she] feel depressed? Would [you/he/she] say…

[Read response categories]

1. Daily 2. Weekly 3. Monthly 4. A few times a year 5. Never 7. Refused 9. Don’t know

DEP_2 [Do/Does] [you/he/she] take medication for depression?

1. Yes 2. No (If “Never” to DEP_1 and “No” to DEP_2, skip to next section.) 7. Refused 9. Don’t know

DEP_3 Thinking about the last time [you/he/she] felt depressed, how depressed did

[you/he/she] feel? Would you say… [Read response categories]

1. A little 2. A lot 3. Somewhere in between a little and a lot 7. Refused 9. Don’t know

PAIN Proxy respondents may be omitted from this section, at country’s discretion. Interviewer: If respondent asks whether they are to answer about their pain when taking their medications, say: “Please answer according to whatever medication [you were/he was/she was] taking.” PAIN_1 In the past 3 months, how often did [you/he/she] have pain? Would you say…

[Read response categories]

1. Never (If “Never” to PAIN_1, skip to next section.) 2. Some days 3. Most days 4. Every day 7. Refused 9. Don’t know

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

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11 PAIN_2 Thinking about the last time [you/he/she] had pain, how much pain did

[you/he/she] have? Would you say… [Read response categories]

1. A little 2. A lot 3. Somewhere in between a little and a lot 7. Refused 9. Don’t know

FATIGUE Proxy respondents may be omitted from this section, at country’s discretion. TIRED_1 In the past 3 months, how often did [you/he/she] feel very tired or exhausted?

Would you say… [Read response categories]

1. Never (If “Never” to TIRED_1, skip to next section.) 2. Some days 3. Most days 4. Every day 7. Refused 9. Don’t know

TIRED_2 Thinking about the last time [you/he/she] felt very tired or exhausted, how long

did it last? Would you say… [Read response categories]

1. Some of the day 2. Most of the day 3. All of the day 7. Refused 9. Don’t know

TIRED_3 Thinking about the last time [you/he/she] felt this way, how would you describe

the level of tiredness? Would you say… [Read response categories]

1. A little 2. A lot 3. Somewhere in between a little and a lot 7. Refused 9. Don’t know

Please see the following webpage for more information about the Washington Group on Disability Statistics: http://www.cdc.gov/nchs/washington_group.htm.

67

Annex4–WGChildFunctioningAge2to4yearsold

CF1. I WOULD LIKE TO ASK YOU SOME QUESTIONS ABOUT

DIFFICULTIES YOUR CHILD MAY HAVE.

DOES (name) WEAR GLASSES? Yes ........................... 1 No ............................. 2 2ðCF3

CF2. WHEN WEARING HIS/HER GLASSES, DOES (name) HAVE DIFFICULTY SEEING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

1ðCF4 2ðCF4 3ðCF4 4ðCF4

CF3. DOES (name) HAVE DIFFICULTY SEEING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficulty ........ 3 Cannot do at all ........ 4

CF4. DOES (name) USE A HEARING AID? Yes ........................... 1 No ............................. 2 2ðCF6

CF5. WHEN USING HIS/HER HEARING AID, DOES (name) HAVE DIFFICULTY HEARING SOUNDS LIKE PEOPLES’

VOICES OR MUSIC?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty................ 1 Some difficulty .......... 2 A lot of difficulty ........ 3 Cannot do at all ........ 4

1ðCF7 2ðCF7 3ðCF7 4ðCF7

CF6. DOES (name) HAVE DIFFICULTY HEARING SOUNDS LIKE

PEOPLES’ VOICES OR MUSIC?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF7. DOES (name) USE ANY EQUIPMENT OR RECEIVE

ASSISTANCE FOR WALKING? Yes ........................... 1 No ............................. 2 2ðCF10

CF8. WITHOUT HIS/HER EQUIPMENT OR ASSISTANCE, DOES (name) HAVE DIFFICULTY WALKING?

WOULD YOU SAY (name) HAS: SOME DIFFICULTY, A LOT OF

DIFFICULTY OR CANNOT DO AT ALL? Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF9. WITH HIS/HER EQUIPMENT OR ASSISTANCE, DOES (name) HAVE DIFFICULTY WALKING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

1ðCF11 2ðCF11 3ðCF11 4ðCF11

CF10. COMPARED WITH CHILDREN OF THE SAME AGE, DOES (name) HAVE DIFFICULTY WALKING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF11. COMPARED WITH CHILDREN OF THE SAME AGE, DOES (name) HAVE DIFFICULTY PICKING UP SMALL

OBJECTS WITH HIS/HER HAND?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

68

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL? CF12. DOES (name) HAVE DIFFICULTY UNDERSTANDING

YOU?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF13. WHEN (name) SPEAKS, DO YOU HAVE DIFFICULTY

UNDERSTANDING HIM/HER?

WOULD YOU SAY YOU HAVE: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF14. COMPARED WITH CHILDREN OF THE SAME AGE,

DOES (name) HAVE DIFFICULTY LEARNING THINGS?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF15. COMPARED WITH CHILDREN OF THE SAME AGE,

DOES (name) HAVE DIFFICULTY PLAYING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF16. COMPARED WITH CHILDREN OF THE SAME AGE, HOW MUCH DOES (name) KICK, BITE OR HIT OTHER

CHILDREN OR ADULTS?

WOULD YOU SAY: NOT AT ALL, THE SAME OR LESS, MORE

OR A LOT MORE?

Not at all …................ 1 The same or less ...... 2 More …………........... 3 A lot more …….......... 4

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Annex5–WGChildFunctioningAge5to17yearsold

CF1. I WOULD LIKE TO ASK YOU SOME QUESTIONS ABOUT

DIFFICULTIES YOUR CHILD MAY HAVE.

DOES (name) WEAR GLASSES? Yes ........................... 1 No ............................. 2 2ðCF3

CF2. WHEN WEARING HIS/HER GLASSES, DOES (name) HAVE DIFFICULTY SEEING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

1ðCF4

2ðCF4

3ðCF4

4ðCF4

CF3. DOES (name) HAVE DIFFICULTY SEEING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficulty ........ 3 Cannot do at all ........ 4

CF4. DOES (name) USE A HEARING AID? Yes ........................... 1 No ............................. 2 2ðCF6

CF5. WHEN USING HIS/HER HEARING AID, DOES (name) HAVE DIFFICULTY HEARING SOUNDS LIKE PEOPLES’

VOICES OR MUSIC?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty................ 1 Some difficulty .......... 2 A lot of difficulty ........ 3 Cannot do at all ........ 4

1ðCF7

2ðCF7

3ðCF7

4ðCF7

CF6. DOES (name) HAVE DIFFICULTY HEARING SOUNDS LIKE

PEOPLES’ VOICES OR MUSIC?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF7. DOES (name) USE ANY EQUIPMENT OR RECEIVE

ASSISTANCE FOR WALKING? Yes ........................... 1 No ............................. 2 2ðCF12

CF8. WITHOUT HIS/HER EQUIPMENT OR ASSISTANCE, DOES (name) HAVE DIFFICULTY WALKING 100

YARDS/METERS ON LEVEL GROUND? THAT WOULD BE

ABOUT THE LENGTH OF 1 FOOTBALL FIELD. [OR INSERT

COUNTRY SPECIFIC EXAMPLE]. WOULD YOU SAY (name) HAS: SOME DIFFICULTY, A LOT OF

DIFFICULTY OR CANNOT DO AT ALL? Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

3ðCF10

4ðCF10

CF9. WITHOUT HIS/HER EQUIPMENT OR ASSISTANCE,

DOES (name) HAVE DIFFICULTY WALKING 500

YARDS/METERS ON LEVEL GROUND? THAT WOULD BE

ABOUT THE LENGTH OF 5 FOOTBALL FIELDS. [OR INSERT

COUNTRY SPECIFIC EXAMPLE]. WOULD YOU SAY (name) HAS: SOME DIFFICULTY, A LOT OF

DIFFICULTY OR CANNOT DO AT ALL? Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF10. WITH HIS/HER EQUIPMENT OR ASSISTANCE, DOES No difficulty ............... 1 Some difficulty .......... 2 3ðCF14

70

(name) HAVE DIFFICULTY WALKING 100 YARDS/METERS ON

LEVEL GROUND? THAT WOULD BE ABOUT THE LENGTH OF

1 FOOTBALL FIELD. [OR INSERT COUNTRY SPECIFIC

EXAMPLE]. WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

A lot of difficult .......... 3 Cannot do at all ........ 4 4ðCF14

CF11. WITH HIS/HER EQUIPMENT OR ASSISTANCE, DOES

(name) HAVE DIFFICULTY WALKING 500 YARDS/METERS ON

LEVEL GROUND? THAT WOULD BE ABOUT THE LENGTH OF

5 FOOTBALL FIELDS. [OR INSERT COUNTRY SPECIFIC

EXAMPLE]. WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

1ðCF14

CF12. COMPARED WITH CHILDREN OF THE SAME AGE, DOES (name) HAVE DIFFICULTY WALKING 100

YARDS/METERS ON LEVEL GROUND? THAT WOULD BE

ABOUT THE LENGTH OF 1 FOOTBALL FIELD. [OR INSERT

COUNTRY SPECIFIC EXAMPLE]. WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

3ðCF14

4ðCF14

CF13. COMPARED WITH CHILDREN OF THE SAME AGE,

DOES (name) HAVE DIFFICULTY WALKING 500

YARDS/METERS ON LEVEL GROUND? THAT WOULD BE

ABOUT THE LENGTH OF 5 FOOTBALL FIELDS. [OR INSERT

COUNTRY SPECIFIC EXAMPLE]. WOULD YOU SAY YOU HAVE: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF14. DOES (name) HAVE DIFFICULTY WITH SELF- CARE

SUCH AS FEEDING OR DRESSING HIM/HERSELF? WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF15. WHEN (name) SPEAKS, DOES HE/SHE HAVE

DIFFICULTY BEING UNDERSTOOD BY PEOPLE INSIDE OF

THIS HOUSEHOLD? WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF16. WHEN (name) SPEAKS, DOES HE/SHE HAVE

DIFFICULTY BEING UNDERSTOOD BY PEOPLE OUTSIDE OF

THIS HOUSEHOLD? WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

71

CF17. COMPARED WITH CHILDREN OF THE SAME AGE,

DOES (name) HAVE DIFFICULTY LEARNING THINGS?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF18. COMPARED WITH CHILDREN OF THE SAME AGE,

DOES (name) HAVE DIFFICULTY REMEMBERING THINGS?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF19. DOES (name) HAVE DIFFICULTY CONCENTRATING ON

AN ACTIVITY THAT HE/SHE ENJOYS DOING?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF20. DOES (name) HAVE DIFFICULTY ACCEPTING

CHANGES IN HIS/HER ROUTINE?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF21. COMPARED WITH CHILDREN OF THE SAME AGE,

DOES (name) HAVE DIFFICULTY CONTROLLING HIS/HER

BEHAVIOUR?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF22. DOES (name) HAVE DIFFICULTY MAKING FRIENDS?

WOULD YOU SAY (name) HAS: NO DIFFICULTY, SOME

DIFFICULTY, A LOT OF DIFFICULTY OR CANNOT DO AT ALL?

No difficulty ............... 1 Some difficulty .......... 2 A lot of difficult .......... 3 Cannot do at all ........ 4

CF23. HOW OFTEN DOES (name) SEEM VERY ANXIOUS,

NERVOUS OR WORRIED?

WOULD YOU SAY: DAILY, WEEKLY, MONTHLY, A FEW TIMES

A YEAR OR NEVER?

Daily .......................... 1 Weekly ...................... 2 Monthly ..................... 3 A few times a year .... 4 Never ……………… 5

CF24. HOW OFTEN DOES (name) SEEM VERY SAD OR

DEPRESSED?

WOULD YOU SAY: DAILY, WEEKLY, MONTHLY, A FEW TIMES

A YEAR OR NEVER?

Daily .......................... 1 Weekly ...................... 2 Monthly ..................... 3 A few times a year .... 4 Never ……………… 5

72

Annex6–MICSquestionnaireforchildrenunderfive,sectiononchild

functioning

ThetablebelowshowstheoriginalMICSquestionerwithacomplementarycolumnon

therightreferringtothecorrespondingquestionintheWGchildfunctioningquestions

forchildrenage2to4(seeannex4)

CHILDFUNCTIONING

UCF Based on

WG

UCF1. Check UB2: Child’s age? AGE 0 OR 1 ........................... 1 AGE 2, 3 OR 4 ....................... 2

1ðEnd

UCF2. I would like to ask you some questions about difficulties (name) may have.

Does (name) wear glasses?

YES ......................................... 1 NO .......................................... 2

CF1

UCF3. Does (name) use a hearing aid? YES ......................................... 1 NO .......................................... 2

CF4

UCF4. Does (name) use any equipment or receive assistance for walking?

YES ......................................... 1 NO .......................................... 2

CF7

UCF5. In the following questions, I will ask you to answer by selecting one of four possible answers. For each question, would you say that (name) has: 1) no difficulty, 2) some difficulty, 3) a lot of difficulty, or 4) that (he/she) cannot at all.

Repeat the categories during the individual questions whenever the respondent does not use an answer category: REMEMBER THE FOUR POSSIBLE ANSWERS: WOULD YOU SAY THAT (NAME) HAS: 1) NO

DIFFICULTY, 2) SOME DIFFICULTY, 3) A LOT

OF DIFFICULTY, OR 4) THAT (HE/SHE)

CANNOT AT ALL?

NO DIFFICULTY ................... 1 SOME DIFFICULTY .............. 2 A LOT OF DIFFICULTY ....... 3 CANNOT SEE AT ALL ......... 4

UCF6. Check UCF2: Child wears glasses? YES, UCF2=1 ......................... 1 NO, UCF2=2 .......................... 2

1ðUCF7A 2ðUCF7B

UCF7A. When wearing (his/her) glasses, does (name) have difficulty seeing?

UCF7B. Does (name) have difficulty seeing?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT SEE AT ALL ........ 4

CF2 CF3

UCF8. Check UCF3: Child uses a hearing aid?

YES, UCF3=1 ......................... 1 NO, UCF3=2 .......................... 2

1ðUCF9A 2ðUCF9B

73

UCF9A. When using (his/her) hearing aid(s), does (name) have difficulty hearing sounds like peoples’ voices or music?

UCF9B. Does (name) have difficulty hearing

sounds like peoples’ voices or music?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT HEAR AT ALL .... 4

CF5 CF6

UCF10. Check UCF4: Child uses equipment or receives assistance for walking?

YES, UCF4=1 ......................... 1 NO, UCF4=2 .......................... 2

1ðUCF11 2ðUCF13

UCF11. Without (his/her) equipment or assistance, does (name) have difficulty walking?

SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT WALK AT ALL ... 4

CF8

UCF12. With (his/her) equipment or assistance, does (name) have difficulty walking?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT WALK AT ALL ... 4

1ðUCF14 2ðUCF14 3ðUCF14 4ðUCF14

CF 9

UCF13. Compared with children of the same age, does (name) have difficulty walking?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT WALK AT ALL ... 4

CF10

UCF14. Compared with children of the same age, does (name) have difficulty picking up small objects with (his/her) hand?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT PICK UP AT ALL 4

CF11

UCF15. Does (name) have difficulty understanding you?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT UNDERSTAND AT

ALL ..................................... 4

CF12

UCF16. When (name) speaks, do you have difficulty understanding (him/her)?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT BE UNDERSTOOD AT

ALL ..................................... 4

CF13

UCF17. Compared with children of the same age, does (name) have difficulty learning things?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT LEARN THINGS AT

ALL ..................................... 4

CF14

UCF18. Compared with children of the same age, does (name) have difficulty playing?

NO DIFFICULTY .................. 1 SOME DIFFICULTY ............. 2 A LOT OF DIFFICULTY ...... 3 CANNOT PLAY AT ALL ..... 4

CF15

74

UCF19. The next question has five different options for answers. I am going to read these to you after the question.

Compared with children of the same age,

how much does (name) kick, bite or hit other children or adults?

Would you say: not at all, less, the same,

more or a lot more?

NOT AT ALL ......................... 1 LESS ....................................... 2 THE SAME ............................ 3 MORE ..................................... 4 A LOT MORE ........................ 5

CF19

75

Annex7–MICSquestionnaireforchildrenage5-17,sectiononchild

functioning

ThetablebelowshowstheoriginalMICSquestionnairewithacomplementarycolumn

ontherightreferringtothecorrespondingquestionintheWGchildfunctioning

questionsforchildrenage5to17(seeannex5)

CHILDFUNCTIONING FCF

FCF1. I would like to ask you some questions about difficulties (name) may have.

Does (name) wear glasses or contact lenses?

YES .................................................. 1 NO .................................................... 2

CF1

FCF2. Does (name) use a hearing aid? YES .................................................. 1 NO .................................................... 2

CF4

FCF3. Does (name) use any equipment or receive assistance for walking?

YES ................................................... 1 NO ..................................................... 2

CF7

FCF4. In the following questions, I will ask you to answer by selecting one of four possible answers. For each question, would you say that (name) has: 1) no difficulty, 2) some difficulty, 3) a lot of difficulty, or 4) that (he/she) cannot at all.

Repeatthecategoriesduringthe

individualquestionswheneverthe

respondentdoesnotuseananswer

category

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT SEE AT ALL 4

FCF5. Check FCF1: Child wears glasses or contact lenses?

YES, FCF1=1 ..................................... 1 NO, FCF1=2 ...................................... 2

1ðFCF6A 2ðFCF6B

FCF6A. When wearing (his/her) glasses or contact lenses, does (name) have difficulty seeing?

FCF6B. Does (name) have difficulty seeing?

NO DIFFICULTY ............................. 1 SOME DIFFICULTY ........................ 2 A LOT OF DIFFICULTY ................. 3 CANNOT SEE AT ALL .................... 4

CF2 CF3

FCF7. Check FCF2: Child uses a hearing aid? YES, FCF2=1 ..................................... 1 NO, FCF2=2 ...................................... 2

1ðFCF8A 2ðFCF8B

FCF8A. When using (his/her) hearing aid(s), does (name) have difficulty hearing sounds like peoples’ voices or music?

FCF8B. Does (name) have difficulty hearing sounds like peoples’ voices or music?

NO DIFFICULTY ............................. 1 SOME DIFFICULTY ........................ 2 A LOT OF DIFFICULTY ................. 3 CANNOT HEAR AT ALL ................ 4

CF5

FCF9. Check FCF3: Child uses equipment or receives assistance for walking?

YES, FCF3=1 ..................................... 1 NO, FCF3=2 ...................................... 2

2ðFCF14

76

FCF10. Without (his/her) equipment or assistance, does (name) have difficulty walking 100 meters/yards on level ground?

Probe: That would be about the length of 1 football field.

Note that category ‘No difficulty’ is not available, as the child uses equipment or receives assistance for walking.

SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT WALK 100 M/Y AT ALL 4

3ðFCF12 4ðFCF12

CF8

FCF11. Without (his/her) equipment or assistance, does (name) have difficulty walking 500 meters/yards on level ground?

Probe: That would be about the length of 5 football fields.

Note that category ‘No difficulty’ is not available, as the child uses equipment or receives assistance for walking.

SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT WALK 500 M/Y AT ALL 4

CF9

FCF12. With (his/her) equipment or assistance, does (name) have difficulty walking 100 meters/yards on level ground?

Probe: That would be about the length of 1 football field.

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT WALK 100 M/Y AT ALL 4

3ðFCF16 4ðFCF16

CF10

FCF13. With (his/her) equipment or assistance, does (name) have difficulty walking 500 meters/yards on level ground?

Probe: That would be about the length of 5 football fields.

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT WALK 500 M/Y AT ALL 4

1ðFCF16

CF11

FCF14. Compared with children of the same age, does (name) have difficulty walking 100 meters/yards on level ground?

Probe: That would be about the length of 1 football field.

NO DIFFICULTY ............................. 1 SOME DIFFICULTY ........................ 2 A LOT OF DIFFICULTY ................. 3 CANNOT WALK 100 M/Y AT ALL 4

3ðFCF16 4ðFCF16

CF12

FCF15. Compared with children of the same age, does (name) have difficulty walking 500 meters/yards on level ground?

Probe: That would be about the length of 5 football fields.

NO DIFFICULTY ............................. 1 SOME DIFFICULTY ........................ 2 A LOT OF DIFFICULTY ................. 3 CANNOT WALK 500 M/Y AT ALL 4

CF13

FCF16. Does (name) have difficulty with self-care such as feeding or dressing (himself/herself)?

NO DIFFICULTY ............................. 1 SOME DIFFICULTY ........................ 2 A LOT OF DIFFICULTY ................. 3 CANNOT CARE FOR SELF AT ALL4

CF14

FCF17. When (name) speaks, does (he/she) have difficulty being understood by people inside of this household?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT BE UNDERSTOOD AT ALL

.......................................................... 4

CF15

77

FCF18. When (name) speaks, does (he/she) have difficulty being understood by people outside of this household?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT BE UNDERSTOOD AT ALL

.......................................................... 4

CF16

FCF19. Compared with children of the same age, does (name) have difficulty learning things?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT LEARN THINGS AT ALL 4

CF17

FCF20. Compared with children of the same age, does (name) have difficulty remembering things?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT REMEMBER THINGS AT

ALL .................................................. 4

CF18

FCF21. Does (name) have difficulty concentrating on an activity that (he/she) enjoys doing?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT CONCENTRATE AT ALL4

CF19

FCF22. Does (name) have difficulty accepting changes in (his/her) routine?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT ACCEPT CHANGES AT ALL

.......................................................... 4

CF20

FCF23. Compared with children of the same age, does (name) have difficulty controlling (his/her) behaviour?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT CONTROL BEHAVIOUR AT

ALL .................................................. 4

CF21

FCF24. Does (name) have difficulty making friends?

NO DIFFICULTY .............................. 1 SOME DIFFICULTY ......................... 2 A LOT OF DIFFICULTY .................. 3 CANNOT MAKE FRIENDS AT ALL4

CF22

FCF25. The next questions have different options for answers. I am going to read these to you after each question.

I would like to know how often (name) seems very anxious, nervous or worried.

Would you say: daily, weekly, monthly, a few times a year or never?

DAILY ................................................ 1 WEEKLY ............................................ 2 MONTHLY ......................................... 3 A FEW TIMES A YEAR ................... 4 NEVER ............................................... 5

CF23

FCF26. I would also like to know how often (name) seems very sad or depressed.

Would you say: daily, weekly, monthly, a few times a year or never?

DAILY ................................................ 1 WEEKLY ............................................ 2 MONTHLY ......................................... 3 A FEW TIMES A YEAR ................... 4 NEVER ............................................... 5

CF24

78

Annex8–Questionnaire

Questionnaire

Dataonchildrenwithdisabilities

Question Answer

Generalinformation

> Whatisyournameand

position?

> Pleasedescribebrieflythe

project(s)youarecurrently

workingon?

> Inwhichcountryisyourproject

located?

DataSources

> Arepersonswithdisabilities

partofthetargetgroup(direct

orpotentiallyindirect)ofyour

programme?

> Forwhatpurposedoyouneed

disabilitydataingeneraland

dataonchildrenwith

disabilitiesinparticular?

> Doyouhaveaccesstodataon

childrenwithdisabilities?

> Pleasenamethesources

> Whichofthedatasourcesdo

youfinduseful?Pleaseexplain

youranswerbriefly.Thank

you.

> AreyouawareoftheUnited

NationsWashingtonGroup

(UN-WG)questionsandthe

WHOInternational

ClassificationofFunctioning,

DisabilityandHealth(WHO-

ICF)?

> Doyouthinkthatthedata

sourcesyouareusing

incorporatethephilosophyof

theUN-WGorWHO-ICF?

79

> Dothedatasourcesyouare

usinggiveyousatisfactory

informationforyourwork?

Pleaseexplain.Thankyou.

> Whataretheshortcomingsof

thedatayouareusing?Please

explain.Thankyou.

> Whatkinddataand

informationareyoumissingin

thedatasourcesthatyou

access?

CollectingData

> Hasyourprojectmadean

efforttocollectdata?

> Ifyes,doesthedatacollection

includedataonchildrenwith

disabilities?

> Pleasedescribetheapproach

todatacollection.

> Whatchallengesdidyouface?

> Pleasesendthedatasourcesor

linkstodatasourcesto

alex@alexanderhauschild.com

80

Annex9–DMATperformancechartswithage-windows

DenverIITestChart

81

MalawiDMATperformancecharts

82

83

KhmerDMATperformancecharts

0 12 24 36 48 60 72 84

G1:Equalmovement

G2:Lifthead

G3:Turnheadasidewhenlayingfacedown

G4:Headup45degrees

G5:Situpsteadily

G6:Bearweightonlegs

G7:Chestupwitharmsupport

G8:Rollover

G9:Noheadlagwhenpulledtosit

G10:Sitwithout support(≥10sec)

G11:Standingholdingon

G12:Crawl

G13:Gettingtosit

G14:Pulluptostand

G15:Standingalone(≥2sec)

G16:Takestepswithholding

G17:Turnheadandtrunkinalldirection

G18:Standalone(≥10sec)

G19:Benddownandgetagainup(stoop&recover)

G20:Walkalone(5steps)

G21:Walkbackward

G22:Runwithgoodbalance(2m)

G23:Walkup2ormoresteps

G24:Kickballforward

G25:Jumpupwithbothfeettogether

G26:Throwobjectoverhand

G27:Jumpfar

G28:Balanceoneachfoot≥1second

G29:Heel-to-toewalkonstraightline(≥4steps)

G30:Hop2timesormoreononefoot

G31:Balanceoneachfootfor≥3seconds

G32:Balanceoneachfootfor≥6seconds

KhmerGrossmotorDMAT2017%PASS/monthagecohort

≤P25PASS

P25-P75PASS

P75-P90PASS

P90-P100PASS

84

0 12 24 36 48 60 72 84

L1:Respondtonoise

L2:Makesounds

L3:Laughaloud

L4:Squeal

L5:Turnheadtosounds

L6:Turnheadtovoice

L7:Babble

L8:Maorpa(non-specific)

L9:Respondtohisname

L10:Sayplaysound

L11:Makmak/paa/bong(specific)

L12:Say1wordbeside“makmak/paa/bong”

L13:Say3words

L14:Say6words

L15:Pointto2of5pictures

L16:Saya3-wordphrase

L17:Pointto4of5objects

L18:Name≥1outof5animals

L19:Speakhalfunderstandably

L20:Name4outof5animals

L21:Knowuseof1outof3objects

L22:Usepronounscorrectly

L23:Knowuseof2outof3objects

L24:Count1to5

L25:Know4animalsounds

L26:Speakunderstandably

L27:Understand4prepositions

L28:Knowuse/actionof3outof3objects

L29:Name1of6colors

L30:Understandatleast2opposites

L31:Conversation

L32:Countfrom1to10

L33:Nameatleast4colors

KhmerLanguageCognitionDMATversion1%PASSbymonthagecohort

P25PASS

P25-P75PASS

P75-P90PASS

P90-P100PASS

85

0 12 24 36 48 60 72 84

F1:Followobjecttomidline(90o)

F2:Followobjectpassedmidline(≥…

F3:Graspbigobject

F4:Playwithownbody

F5:Handstogether

F6:Follow180degrees

F7:Looksatsmallobjects

F8:Reachforredstring

F9:Rakelotusseed(1outof3)

F10:Putobjectinmouth

F11:Takeobjectsineachhand

F12:Transferobjectbetweenhands

F13:Thumb-fingergrasp

F14:Bang2objectstogether

F15:Putblockincup

F16:Scribblewithpencil

F17:Pincergrasp

F18:Tower2blocks

F19:Tower4blocks

F20:Takeoffeasyclothes

F21:Tower6blocks

F22:Liftlidofcontainer

F23:Imitateverticalline(<30o)

F24:Foldapaper

F25:Tower8blocks

F26:Wiggleonethumb

F27:Unscrewajar

F28:Makestringwith≥3beads

F29:Copycircle

F30:Copycross

F31:Unzipandunbutton

F32:Catchsoftball

F33:Pickthelongestline(3outof3)

F34:Tiesingleknot

F35:Drawpersonwith6bodyparts

F36:Copysquare

F37:Copytriangle

KhmerFinemotorDMATversion1%PASSbymonthagecohort

P25PASSP25-P75PASSP75-P90PASSP90-P100PASS

86

0 12 24 36 48 60 72 84

G1:Equalmovement

G2:Lifthead

G3:Turnheadasidewhenlayingfacedown

G4:Headup45degrees

G5:Situpsteadily

G6:Bearweightonlegs

G7:Chestupwitharmsupport

G8:Rollover

G9:Noheadlagwhenpulledtosit

G10:Sitwithout support(≥10sec)

G11:Standingholdingon

G12:Crawl

G13:Gettingtosit

G14:Pulluptostand

G15:Standingalone(≥2sec)

G16:Takestepswithholding

G17:Turnheadandtrunkinalldirection

G18:Standalone(≥10sec)

G19:Benddownandgetagainup(stoop&recover)

G20:Walkalone(5steps)

G21:Walkbackward

G22:Runwithgoodbalance(2m)

G23:Walkup2ormoresteps

G24:Kickballforward

G25:Jumpupwithbothfeettogether

G26:Throwobjectoverhand

G27:Jumpfar

G28:Balanceoneachfoot≥1second

G29:Heel-to-toewalkonstraightline(≥4steps)

G30:Hop2timesormoreononefoot

G31:Balanceoneachfootfor≥3seconds

G32:Balanceoneachfootfor≥6seconds

KhmerGrossmotorDMATversion1%PASS/monthagecohort

≤P25PASS

P25-P75PASS

P75-P90PASS

P90-P100PASS

87

Annex10–CambodianCommunity-basedDMAT(CBDMAT)

88

Annex11–NewbornTriageChecklist

89

90

Annex12–Differencesinperformance(Cambodia,MalawiandDenverII)

MONTHLYAGECOHORTKhmermonthminus

Malawi

Khmermonthminus

DenverAverage

differenceSocialdomain

(Khmerfasteraverage,

descendingorder)

P25 P75 P90 P25 P75 P90

S36:Playkidgames -13 -20 -1 -11

S32:Three-stepcommand -9 -6 -13 -9

S34:Serveownfood -8 -9 -9 -9

S23:Pointto2bodyparts -7 -8 -5 -7

S24:Putonsimpleclothes

withhelp-8 -9 -7 -4 0 5 -4

S15:Greetwithhandclasp -6 -8 -9 3 6 4 -2

S33:Dress((un)button/no

help) -7 1 3 -1

S6:Briefinterestintoy -2 -1 0 -1

S1:Lookatface 0 0

S26:Combhairwithhelp -1 1 0 0

S4:Smileresponsively 1 1 1 1 2 2 1

S17:Hold&drinkfromcup 2 2 3 2 -1 0 1

S13:Play‘chabchaab’ -1 2 4 1

S3:Smilespontaneously 2 3 0 1 1

S5:Recognizeitsownhands 1 1 4 2

S19:Usespoon 2 3 4 1 3 3 3

S20:Imitateactivities 2 5 6 4

S29:Tellownname&

gender0 3 10 4

S14:Indicatewants 3 5 6 4

S30:Nameafriend -1 6 9 5

S27:Washanddryhand 5 7 1 4 13 7 6

S31:PutonT-shirtwithout

help 5 8 15 9

S37:Helparoundthehouse -18 -5 6 28 38 10

91

FineMotorMilestones

Khmer-

Malawi

P25

pass

Khmer-

Malawi

P75

pass

Khmer-

Malawi

P90

pass

Khmer-

Denver

P25

pass

Khmer-

Denver

P75

pass

Khmer-

Denver

P90

pass

Average

difference

F33:Pickthelongestline(3

outof3) -7 -9 -20 -12

F27:Unscrewajar -5 -7 -10 -7

F30:Copycross -14 -4 1 -12 6 11 -2

F9:Rakelotusseed(1out

of3)-1 -2 -1 -1

F36:Copysquare -4 -6 -6 -3 1 12 -1

F28:Makestringwith≥3

beads2 0 -2 0

F7:Looksatsmallobjects 1 -1 2 1

F26:Wiggleonethumb -1 3 1 1

F8:Reachforredstring 0 1 3 1

F3:Graspbigobject 1 2 2 1

F5:Handstogether -1 1 4 -1 1 4 1

F2:Followobjectpassed

midline(≥90o) 1 2 2 1

F10:Putobjectinmouth 2 2 4 -1 1 2 1

F19:Tower4blocks 2 -1 -6 4 4 8 2

F21:Tower6blocks -2 -1 -2 3 7 6 2

F11:Takeobjectsineach

hand 0 3 4 2

F1:Followobjecttomidline

(90o) 2 2 3 3 2

F6:Follow180degrees 3 3 5 1 1 3 3

F15:Putblockincup 1 2 4 2 3 6 3

F18:Tower2blocks -1 -1 -2 3 7 10 3

F23:Imitateverticalline

(<30o)-1 -1 -3 5 11 10 4

F29:Copycircle -9 1 6 -8 13 21 4

F25:Tower8blocks 1 8 4 4

F13:Thumb-fingergrasp 1 4 9 4

F12:Transferobject

betweenhands2 6 10 2 6 9 6

F16:Scribblewithpencil -2 3 4 6 13 15 6

F14:Bang2objects

together6 8 8 4 7 8 7

F17:Pincergrasp 6 7 12 8

F35:Drawpersonwith6

bodyparts 11 13 10 11

F20:Takeoffeasyclothes 9 14 24 16

92

LanguageMilestone

Khmer-

Malawi

P25

pass

Khmer-

Malawi

P75

pass

Khmer-

Malawi

P90

pass

Khmer-

Denver

P25

pass

Khmer-

Denver

P75

pass

Khmer-

Denver

P90

pass

Average

difference

L24:Count1to5 -30 -18 -26 -24 -4 6 -16

L30:≥2opposites -21 -19 -19 -11 -9 -8 -15

L7:Babble -2 -2 -1 -2 -1 -1 -1

L5:Turnheadtosounds -2 -1 -1 -1

L6:Turnheadtovoice -1 2 2 -3 -1 -1 0

L27:Understand4

prepositions-2 -1 -9 -5 12 7 0

L3:Laughaloud -1 1 1 0 2 2 1

L4:Squeal 2 1 1 1

L28:Knowuse/actionof3

outof3objects-2 -1 -1 -2 8 7 2

L1:Respondtonoise 2 3 2 4 3

L2:Makesounds 2 3 4 4 3

L20:Name4outof5

animals 1 2 7 3

L16:Saya3-wordphrase -6 3 1 1 14 13 4

L9:Respondtohisname 3 4 7 4

L26:Speakunderstandably -2 9 19 -1 1 4 5

L19:Speakhalf

understandably 11 7 1 6

L17:Pointto4of5objects 1 9 9 6

L13:Say3words 5 5 7 5 7 10 6

L12:Say1wordbeside

“makmak/paa/bong” 4 7 10 7

L15:Pointto2of5pictures -2 9 13 7

L8:Maorpa(non-specific) 6 8 10 4 6 8 7

L11:Makmak/paa/bong

(specific) 7 9 8 8

L14:Say6words 1 8 10 5 12 13 8

L18:Name≥1outof5

animals 6 9 12 9

L29:Name1of6colors 5 11 13 10

L22:Usepronounscorrectly 11 16 17 15

L33:Nameatleast4colors 21 32 27 27

93

GrossMotor

Milestones

Khmer-

Malawi

P25

pass

Khmer-

Malawi

P75

pass

Khmer-

Malawi

P90

pass

Khmer-

Denver

P25

pass

Khmer-

Denver

P75

pass

Khmer-

Denver

P90

pass

Average

difference

G29:Heel-to-toewalkon

straightline(≥4steps)-18 -18 -22 -16 -10 -10 -16

G32:Balanceoneachfoot≥6

sec.-15 -8 -3 -26 -19 -14 -14

G31:Balanceoneachfoot≥3

sec. -13 0 2 -4

G30:Hop2timesormoreon

onefoot -7 -4 4 -2

G11:Standingholdingon -2 -3 -3 -1 0 1 -1

G23:Walkup≥2steps -1 -2 1 -1

G20:Walkalone(5steps) 0 -2 -3 2 1 1 0

G25:Jumpupwithbothfeet

together-7 -11 -4 6 4 11 0

G5:Situpsteadily 2 -1 0 1

G15:Standingalone(≥2sec) 0 1 2 1

G1:Equalmovement 0 2 1

G22:Runwithgoodbalance(2

m)1 2 2 1 1 2 1

G13:Gettingtosit 1 1 2 1

G18:Standalone(≥10sec) 1 2 2 2

G12:Crawl 2 2 2 2

G10:Sitwithoutsupport(≥10

sec)1 2 2 1 2 2 2

G14:Pulluptostand 2 1 1 1 2 3 2

G8:Rollover 1 2 3 2 1 2 2

G6:Bearweightonlegs 2 2 3 2 3 3 2

G9:Noheadlagwhenpulled

tosit2 3 5 1 2 2 2

G19:Benddownandgetagain

up(stoop/recover)1 2 2 2 5 6 3

G7:Chestupwitharmsupport 2 4 4 1 3 3 3

G4:Headup45degrees 4 3 3 3

G27:Jumpfar -2 -2 7 0 5 15 4

G2:Lifthead 4 5 4

G24:Kickballforward 2 7 3 2 8 9 5

G28:Balanceoneachfoot≥1

second 0 5 12 6

G26:Throwobjectoverhand 5 11 7 8

G21:Walkbackward 3 12 17 10

94

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