A Guide for Advocates J A N U A R Y 2 0 1 3

Identifying and Selecting Long-Term Services and Supports Outcome Measures

Table of Contents

Introduction  2MedicaidLong-TermServicesandSupports,andHomeandCommunity-BasedServices:TheChangingLandscape  3ManagedLTSS  3StateAdvocates’RoleinIdentifyingManagedLTSSOutcomeMeasures  12CoreManagedLTSS/HCBSOutcomeMeasurementPrinciples  12SelectingMeasures  14DataSources  15GeneratingReports  15BuildingInfrastructureCapacity  16SuggestedActionSteps  18Conclusion  19

Prepared by the Disability Rights Education and Defense Fund (DREDF) in collaboration with the National Senior Citizens Law Center. Funded by the National Institute on Disability and Rehabilitation Research (Grant #H133B080002)

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Introduction

Thispaperprovidesresourcestohelpstateadvocatesidentifymeasuresthatcanhelpdetermineiftheidentifiedneedsandgoalsofpeoplewithdisabilitiesandseniorsarebeingmet.Theneedforsuchmeasuresisincreasinglyimportant,asmoreandmorestateslaunchinitiativestoprovideMedicaidLong-TermServicesandSupports(LTSS)—includingbothinstitutionalandHomeandCommunity-BasedSettings(HCBS)—throughmanagedcarearrangements.

WefocusprimarilyonidentificationofLTSSoutcomemeasuresthatexamineindividualexperience,whetherthatindividualisthebeneficiaryreceivingservices,thebeneficiary’sfamilycaregiver,orapaidpersonalassistant,ratherthanmeasuresthatrelatetostructuralelementsorprocesses.Thisdistinctionisimportantfortworeasons:1)novalidatednationalLTSSoutcomemeasuresarecurrentlyavailable,and2)outcomemeasureswillplayacentralroleingeneratingvaluabledatathattheCentersforMedicareandMedicaidServices(CMS),states,managedcareorganizations(MCO),andadvocatesrequireinordertomonitortheeffectivenessofmanagedLTSS,andcraftandimplementstrategiesforongoingqualityimprovement.Whilethepaperemphasizesoutcomesforlong-termhomeandcommunity-basedservices,someindividualoutcomesalsorelatetotheexperiencesofpeoplelivinginnursingfacilities.

Thepaperoutlinesthefactorsthathavespurredtheincreaseinstates’enrollmentofMedicaidbeneficiarieswithdisabilitiesintomanagedLTSS/HCBSandexplainswhymeasuringindividualoutcomesissoimportantasthesechangesareimplemented.Recentworktoidentifyappropriateindividualoutcomemeasuresaswellasgapsinneededmeasuresareidentifiedanddiscussed.Examplesofmeasuresthatareindevelopmentandthatareincurrentusearealsopresented.

WepresentcoreprinciplesandcriteriaforselectionofLTSSoutcomemeasures.Wealsopresentpossiblesourcesofdatathatcouldbeusedtorespondtospecificquestionsrelatedtoqualityaswellaskeyreporttopicsthatwillgenerateinformationneededforqualityimprovement.ThepaperalsosuggestsmethodsforbuildingLTSSknowledgeandinfrastructurecapacityatfederalagencies,states,MCOsandserviceproviders.IncludedarekeytrainingrecommendationsforincorporatingLTSSperson-centeredvaluesatthesevarioussystemslevels,andmonitoringandreportingrequirementsthatadvocatesshouldknow.

Thepaperconcludeswithsuggestedactionstepsandresourcesforadvocateswhoareworkingwithstates,MCOs,community-basedserviceorganizations,disabilityandseniorgroupsandotherstakeholdersasstateslaunchmanagedLTSSandHCBSinitiatives.

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Medicaid Long-Term Services and Supports, and Home and Community-Based Services: The Changing Landscape

HealthcareandLTSSmechanismsandfinancingforlow-incomepeoplewithdisabilitiesofallageshavebeenundergoingsignificantchangesinrecentyears.StatesareincreasinglyrequiringthatMedicaidbeneficiarieswithdisabilitiesandseniorsmandatorilyenrollinmanagedcarewiththedualgoalsofcostsavingandimprovedhealthoutcomes.The2010AffordableCareAct(ACA)authorizedamultistatedemonstrationtoenrollpeoplewhoareduallyeligibleforMedicareandfullMedicaidbenefitsinmanagedcareplans.SomeofthedemonstrationswillalsotransitionLTSSservicesintothemanagedcaresystem.Slatedtobeginin2013insomestates,thedemonstrationsaimtogeneratesavingsaswellasaddressthegapsandinstancesoffinancialandservicemisalignmentbetweenMedicareandMedicaid.Moreover,beginningin2014,theACAwillexpandMedicaidtocovermillionsoflowincome,uninsuredindividuals,includingmanywithdisabilities.SomestatesthatparticipateintheexpansionwilllikelyrequirethatthesenewMedicaidbeneficiariesalsoenrollinmanagedcare.

Managed LTSS 1

Historically,moststateshaveprovidedMedicaidLTSSforpeoplewithdisabilitiesandseniorsprimarilythroughfee-for-servicemodels.SomeofthemethodsfordeliveringLTSShaveevolvedbasedoncoreprinciplesofself-directionandindependentlivingespousedbydisabilityrightsadvocates.Self-directionmeansthatbeneficiariesdirectlycontrolavarietyofservicesandsupports–sometimeswiththeassistanceofotherindividualswhomtheychoose–basedontheirownpreferencesandneeds.Forexample,self-directioncanmeanthatthebeneficiaryhires,supervises,andtrainsapersonalassistanceworkerofherorhischoicewhoispaidbyMedicaid.Thecoreintentofself-directionistomaximizeanindividual’sopportunitiestoliveindependentlyinthemostintegratedcommunity-basedsettingofherorhischoice.

Asmandatoryenrollmentoflow-incomepeoplewithdisabilitiesandseniorsintoMedicaidmanagedhealthcarebecomesmorewidespread,morestatesarealsomovingtoincludeMedicaidLTSSaspartofamanagedcarepackage.ThenumberofstateswithmanagedLTSSprogramsincreasedfrom8in2004to16in2012,andthenumberisexpectedtoreach26by2014.2,3IntegrationofLTSSwithacutecareinsuchplanstypicallyinvolvesashiftofresponsibilityforprovidingLTSStoMCOsthatonlyhaveexperienceprovidingacutecare.ThismodelofcareintegrationofteninvolvesincludingLTSSaspartofacapitatedpaymenttoatraditionalrisk-basedMCO.Thetermcapitated paymentindicatesapaymentmethodinwhichthemanagedcareorganizationispaidacontractedrateforeachmemberassigned,referredtoasa“per-member-per-month”rate,regardlessofthenumberornatureofservicesthatareactuallyprovided.Thecontractualratesareusuallyadjustedforage,gender,illness,physicalandmentalimpairment,regionaldifferences,andotherrelevantfactors.

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WhyAreQualityMeasuresNeeded?

Asdiscussed,asmanyas26statesmayinitiatemanagedMedicaidLTSS/HCBSprogramsby2014.ManyofthesestateswillrelyonMCOsthatlackexperienceprovidingLTSS/HCBSandthatdonothavethecapacitytocollecttimely,reliableandvaliddataaboutthecarebeingprovided,thosewhoprovidecare,orconsumerexperiencewithcare.Thisinformationisfundamentaltoallstrategiesformonitoringoutcomesandidentifyingmethodsforimprovement.4CMS,states,MCOs,healthcareandLTSSproviders,advocatesandbeneficiariesrequireinformationderivedfromappropriate,uniform,andpreferablyvalidatedmeasuresthatassessfactorssuchasadequacyandimpactofservices,quality-of-life,extentofself-directionandself-determination,communityintegrationandparticipation,health,functionalandsafetyoutcomes,andaccesstoconsumerrightsandprotections.MeasuringoutcomesinmanagedLTSSservesavarietyofpurposes:

• Dataenablesstateandfederaloversightoftheextenttowhichmanagedcareplans’commitmentstoconsumer-focusedanddirected,qualityservicesarebeinghonored.

• ThepresenceofoutcomedatacanencourageandenableMCOstofocusonmoreeffectivelymeetingbeneficiaries’expressedneeds.

• Theabilitytotrackoutcomesovertime,includingduringthetransitiontointegrated,managedLTSS,aswellastocompareoutcomesacrossmanagedcareplans,givesadvocatesatooltomakebothplansandthestateaccountableforappropriateserviceprovision.

• Dataassistsstates,MCOsandproviderstoevaluatetheeffectivenessofintegratedcarecoordinationacrossbothclinicalandLTSSdomains.

• Whenconsumershaveachoiceamongplans,orwhethertoreceiveLTSSthroughamanagedcareplan,dataonoutcomescanhelpthemmakesuchchoices.

• Whensimilaroutcomemeasuresareusedacrossprogramsandservicesettings(e.g.,communityversusinstitutions),datacanbeusedbyconsumerstomakechoices,andbyadvocatesandpolicymakerstoidentifyprogramswiththebestoutcomes.5

HowIsQualityMeasured?

Qualitymeasurestypicallyfallintothreecategories:structural,process,oroutcomemeasures.Structuralmeasuresgenerallyrefertoelementsofserviceorcare,suchasphysicalplantoperationsandfacilities,equipment,andstaffcapacity.Structuralelementscanalsoincludemanagementandmanagementstructure,administration,staffqualificationsandbalanceofprofessionalandnonprofessionalstaff,dataandrecordkeepingmechanisms,andotherinternalqualityreviewactivitiesthatanorganizationmightundertake.

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Processmeasurestypicallyrefertotheinteractionbetweentheindividualwhousescareandsystemsthatprovideit,andincludebothatechnicalelementandaninterpersonalelement.Thetechnicalelementmeasurestheappropriatenessofcareandthecapabilityoftheprovider.Italsoincludeselementsoftimelinessandconsistencyforaninterventionandtheskillwithwhichitwasprovided,includingassessment,serviceplanning,andprovisionofcareorservices.

Outcomesaretheresultsofservicesorcare.Theyemanatefromeffortstoassessandtreatconditionsorflowfromsupportandservicesthatpeoplereceiveorshouldbereceiving.Outcomescanbebothbeneficiaryevaluationofcareorsupportandtheresultsofcare.6

QualitymeasuresinclinicalsettingsarehighlydevelopedascomparedwithqualitymeasuresforLTSS,whichareintheearlystagesofstandardizationanddevelopment.7Scientificallyvalidatedclinicalqualitymeasuresinusenationwidetypicallyincludestructural(e.g.,physicalplantoperations,facilities,equipment,staffcapacity),acutemedicalandclinicalprocesses(e.g.,hypertensionorcancerscreening,diseasepreventionsuchaspromotionofsmokingsecessionorweightloss),andhealthoutcomes(e.g.,loweredcholesterolorbloodglucoselevels,weightreduction).FewermeasureshavebeendevelopedthatapplytocaretransitionforLTSSbeneficiaries,thatis,forcareandoutcomesforindividualswhoaretransitioningbetweensettings,suchasacutecarefacilities,homecare,assistedliving,andskillednursingcare.FewerstillmeasureindividualoutcomesspecificallyforLTSSprovidedinamanagedcarecontext.TotheextentthatstatesandMCOsareattemptingtomeasuremanagedLTSSeffectiveness,theytendtouseprocessmeasuressuchaswhetherornotbeneficiariesofmanagedLTSSweregiventhechoicebetweencommunity-basedservicesandinstitutionalization,orhowfrequentlycareneedsaredetermined.Theymayalsousetargetedmonitoringofspecificprocessmeasuresthatareimportanttocertainpopulationssuchasfrequencyofdentalvisitsforpeoplewithdevelopmentaldisabilities.8

WhilefewuniformqualityindicatorshavebeentestedandvalidatedthatwouldinformandguidemonitoringandqualityimprovementofmanagedLTSS,andnonationalstandardsexist,variousinstrumentsandmeasuresthatcontainmanyoftherelevantconceptshavebeendevelopedbynationalprojectstoimproveLTSSoutcomesandquality.9,10,11InlightofincreasingpressuretomeasuremanagedLTSSoutcomesfromaperson-centeredperspective,increasedpublicandprivateeffortshavefocusedonmappingthelandscapeofavailablemeasures,identifyinggaps,andrecommendingfutureactions.

Moreover,CMShastakensomestepstoensurethatthehealthandlongtermcareneedsspecificallyofdualeligiblebeneficiariesareappropriatelymetwhentheyaretransitionedfromfee-for-servicetomanagedcare.Theagencyisrequiringstatesthatareparticipatinginthedualdemonstrationprojectstoreportindividuallevelquality,cost,enrollment,andutilizationdata.CMSisalsorequiringthatparticipatinghealthplansreportencounterdataandmeetcertainqualityindicators.However,theseindicatorsremaintobedetermined.QualityindicatorsidentifiedbythisreportingprocessholdthepotentialtoequallyinformtheinitiativesinvolvingmandatoryenrollmentofMedicaid-onlybeneficiarieswithdisabilitiesandseniorsintomanagedcare.12

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AlthoughCMSisstillconsideringhowstatesshouldmeasuremanagedLTSS/HCBSoutcomesforthedualsdemonstrations,in2004theagencypublishedaQualityFrameworkofLTSS/HCBSdomainsanddesiredoutcomes,illustratedinTable1,thatcontainskeyindicators:13

Table1:CMSQualityFrameworkDomainsandDesiredOutcomes

Focus Desired Outcome

ParticipantAccess Individualshaveaccesstohomeandcommunity-basedservicesandsupportsintheircommunities.

Participant-CenteredServicePlanningandDelivery

Servicesandsupportsareplannedandeffectivelyimplementedinaccordancewitheachparticipant’suniqueneeds,expressedpreferencesanddecisionsconcerninghis/herlifeinthecommunity.

ProviderCapacityandCapabilities TherearesufficientHCBSprovidersandtheypossessanddemonstratethecapabilitytoeffectivelyserveparticipants.

ParticipantSafeguards Participantsaresafeandsecureintheirhomesandcommunities,takingintoaccounttheirinformedandexpressedchoices.

ParticipantRightsandResponsibilities Participantsreceivesupporttoexercisetheirrightsandacceptpersonalresponsibilities.

ParticipantOutcomesandSatisfaction Participantsaresatisfiedwiththeirservicesandachievedesiredoutcomes.

SystemPerformance Thesystemsupportsparticipantsefficientlyandeffectivelyandconstantlystrivestoimprovequality.

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WhatManagedLTSSOutcomesShouldbeMeasured?

ThefollowingsummaryofeffortsthusfartoidentifyexistingoutcomemeasuresintheMedicaidLTSScontextrevealsbothpotentialtoolsforimmediateusewithmanagedLTSSaswellassignificantgapsthatcallforadditionalresearchandpracticalfieldtesting.

1. MeasureApplicationPartnership(MAP)

TheMeasureApplicationPartnership(MAP),authorizedbytheACAandconvenedbytheNationalQualityForum(NQF),hasdevelopedanationalmeasurementstrategyforthedualeligiblepopulation,whichwasreleasedinJune2012.MAPseparatelyexploredqualitymeasuresinMedicaid-supportedHCBS,identifiedsuchmeasuresasamajordevelopmentgaparea,andrecommendedthatHHSfundanNQFeffortonqualitymeasuresinLTSS.14Insupportofthisrecommendation,theMAPreportidentified24potentialillustrationsofperson-centeredconceptsthatwarrantfurtherinvestigation.15TheseincludeunmetActivityofDailyLiving(ADL)needs;degreetowhichpeopleexpresssatisfactionwithrelationships;degreetowhichpeoplewithidentifiedhealthproblemsobtainappropriateservices;16availabilityofself-directionoptions;andself-reportedpreventivehealthcarevisits.Themeasuresfallintoelevenmajordomainsincludingclientfunctioningandexperience;programperformance;choiceofsettingandprovider;andqualityoflifeandqualityofcare.17(SeeAttachmentA.)

2. AgencyforHealthcareResearchandQuality(AHRQ)Scan(June2010)

TheDeficitReductionAct(DRA)of2005directedAHRQtodevelopqualitymeasuresfortheMedicaidHomeandCommunity-BasedServicesprogram.TheDRAinstructedAHRQtodevelopmeasuresinthedomainsofclientfunctioning,clientsatisfaction,andprogramperformanceinordertoassessthequalityofMedicaidHCBSprogramsnationwide.Inresponsetothisdirective,AHRQconductedanextensiveenvironmentalscanusingabroaddefinitionofHCBSservicesandpopulations,including,forexample,populationssuchasadultswithsevereandpersistentmentalillnesswhoarenottraditionalrecipientsofMedicaidHCBS.Reportingresearchoutcomesin2010,AHRQidentifiedmorethan200measuresourcesthatincludedsurveyinstrumentsdesignedtoyieldperformancemeasures,measuresets,andmeasuredatabases.Theseinstrumentsrevealedsomebroadthemes.Forexample,severalconsumersurveytoolshavebeendevelopedthatassessclientexperiencewithHCBS,particularlyforindividualswithintellectualand/ordevelopmentaldisabilities.Moreover,psychometrictestinghasbeencarriedoutonmanysurveysusedbyseveralstateprograms.Whilefewstate-specifictoolshavebeentestedforvalidity,manythatareinusesolicitconsumerfeedbackasameansofprovidingfederallyrequiredassurancesforMedicaid1915(c)waiverprograms.However,AHRQalsoreportedthatnosinglesurveytoolormeasuresetaddressedalltwenty-oneconstructsthattheAgency,withstakeholderinput,hadidentifiedasapplicableacrossallHCBSpopulations.(SeeAttachmentA.)18

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AHRQ’seightconstructsofclientexperience,listedbelowareofparticularinterest,however,becausestate-specificsurveyshavequeriedmanyofthesamedimensionsofexperience:(AlsoseeAttachmentA.)

• Respectfultreatmentbydirectserviceproviders.

• Opportunitiestomakechoicesaboutproviders.

• Opportunitiestomakechoicesaboutservices.

• Satisfactionwithcasemanagementservices.

• Clientperceptionofqualityofcare.

• Satisfactionandchoiceregardingresidentialsetting.

• Clientreportofabuseandneglect.

• Availabilityofsupportforresilienceandrecovery(mentalhealthservicerecipientsonly).Threethemesunderlietheseeightconstructs,composingtheclientexperiencedomainofthemeasurescan:

• Clientchoice,capturedinthreeglobaldimensionsofprogramsupports:providers,services,andhousing.

• Thecross-cuttingthemeofsatisfaction,representedbythequeriesforsatisfactionwithresidentialsettingandcasemanagementservices.Globalsatisfactionisrepresentedbytheconstructforperceptionofthequalityofcare.

• Interpersonalrespectandsupport,whichcanbeassessedpositively,asintheconstructsofrespectfultreatmentbydirectservicestaffandtheavailabilityofstaff/programsupportforresilienceandrecoveryforthosewithseriousmentalillness.Theconverseofpositiveandsupportiveinterpersonalrelationshipsisreflectedintheremainingconstruct,clientreportsofabuseandneglect.

Overall,theseeightmeasurescanbeseenasrepresentingacontinuumfromharmfulandunacceptableexperience(e.g.,neglectandabuse),throughrespectandindividualchoice,culminatinginindividualsatisfaction.

3. TheLong-TermQualityAlliance(LTQA)QualityMeasurementWorkgroupReport(December2011)

TheLong-TermQualityAlliance(LTQA)identifiedmeasurementgapsforLTSSbeneficiariesthatalsosuggestedareasformeasuredevelopmentand/orresearch.Theseincludetransitionalcaremeasuresforperson-andfamily-centeredness.Specifically,measureswereidentifiedthat

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contributetooverallqualityforindividualsandtheirfamiliesandthatarebroaderthanclinicaloutcomes(i.e.,qualityoflife,autonomy,relationships,compassion,socialsupports,andemotionalwell-being).19

4. CenterforPersonalAssistanceServices,UniversityofCaliforniaSanFrancisco

a. In a March 2012 policy document that summarized the results of a review of the literature, the Center for Personal Assistance Services suggested that in order to ensure managed care systems provide appropriate and effective LTSS for newly enrolled low income individuals with disabilities of all ages, a uniform set of LTSS outcome measures must be identified with input from consumers, advocates, and other stakeholders. The Center urged that stakeholders be afforded a variety of measures from which to choose that reflect their values rather than reflecting the particular services they are receiving. The Center accordingly recommended five overarching areas that include such measures, as well as measures of broader outcomes related to the beneficiary, his or her family, and the informal caregivers and paid workers who provide services.20 (See Attachment A.)

b. Selected Inventory of Quality-of-Life Measures for Long-Term Services and Supports Participant Experience Surveys.21

TobegintoaddressthegapinmethodstomeasureLTSSqualityoflifeoutcomes,theCenter,usingWisconsin’sPersonalExperienceOutcomesIntegratedInterviewandEvaluationSystem(PEONIES)(See6cbelow)domainsasastartingpoint,searchedamongrelevant,existingsurveyinstrumentstoidentifypreviouslyfieldtestedquestionsrelatedtothesedomainsandtoqualityoflife(QOL)measures.Thisresearchyieldedalistofmeasuresthatmighteitherbeusedoradaptedtoconstructconcisesurveysusefulformonitoringparticularprogramsservingspecificpopulations.(See,www.dredf.org/Personal-experience-domains-and-items.pdf)

5. CMSHCBSQualityMeasurementProjectUnderDevelopment22

a. The Home and Community-Based Service (HCBS) Experience Survey

CMSissupportingdevelopmentofanewsurveydesignedtoalignwiththeAHRQConsumerAssessmentofHealthcareProvidersandSystems(CAHPS)project.CAHPStoolsprovideastandardbenchmarkforperformanceofhealthcareproviders,usingdataobtainedfrompatientsandothers.CMSiscurrentlytestinganewHCBSExperienceSurveythatcanbeaddedtothecurrentgroupofCAHPSinstruments.ThegoalofthesurveyistoprovidestandardperformancemetricsforHCBSprogramsthatareapplicabletoallpopulationsservedincludingpeoplewithphysicaldisabilities,cognitivedisabilities,intellectualimpairments,anddisabilitiesduetomentalillness.ThesurveyisintendedtogatherdirectfeedbackfromparticipantsinMedicaidHCBSprograms,abouttheirexperienceswithservicesandsupports.TheExperienceSurveyisdifferentfromothersinthatitwillprovidecomparableinformationonprogramparticipantsacrossthespectrumofdisabilityandfederally-fundedservices,regardlessof

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thecontextortimeframeinwhichparticipantsarereceivingHCBS.Surveyresponseswillbecompiledtodevelopqualitymeasuresattheprogramlevel.Thegoalforthesemeasuresistoenablefederalandstategovernmentstoexpandqualityimprovementtoencompassindividualqualityoflifeandoutcomemeasures,acrossHCBSpopulations.DatacollectionforthefieldtestisscheduledtobegininFall2012.23

6. StandardLTSS/HCBSQualityMeasurementOutcomeSurveysInUse

a. Developmental Disabilities National Core Indicators (NCI) Consumer Survey

StatesadministeringMedicaidLTSSforpeoplewithintellectualanddevelopmentaldisabilitieshavelonghadsurveyinstrumentsinplacethatasktheindividualrecipientstheirviewsontheservicesthattheyarereceiving.Twenty-fivestatesnowemployaDevelopmentalDisabilitiesNationalCoreIndicatorsConsumerSurveyandothersarelikelytojointheeffortinthenearfuture.Thecoreindicatorsarestandardmeasuresusedacrossstatestoassesstheoutcomesofservicesprovidedtoindividualsandfamilies.Indicatorsaddresskeyareasofconcernincludingemployment,rights,serviceplanning,communityinclusion,choice,andhealthandsafety.24,25(NCIindicatorscanbeaccessedat:http://www.nationalcoreindicators.org/indicators/)

b. Participant Experience Surveys (PES) for HCBS for Elderly and Disabled

In2003,CMSdevelopedasurveyforstatestoadministertopeoplewithdisabilitiesreceivingHCBSservices.Thesurvey,administeredinface-to-faceinterviews,focuseson:accesstocare,choiceandcontrol,respect/dignity,andcommunityintegration/inclusion.26AHRQalsodevelopedasurveyusers’guidefortheCMSsurveywhichincludesinformationaboutthepurposeofthesurvey;howtoselectthesample;howtochooseandtraininterviewers;howtoscheduleandprepareforinterviews;generalinterviewingguidelines;howtocodetheresponses;howtoanalyzetheresults;andhowtoactonthefindings.27(Acopyofthesurveycanbeaccessedat:http://www.hcbs.org/files/28/1387/3_PES_ED.pdf.)

Inoneexampleofastate’suseofthePES,theTexasDepartmentofAgingandDisabilityServices(DADS)producedareportinJanuary2011describingtheperceivedqualityoflong-termservicesandsupportsadministeredbyDADS,andtrendsinlong-termservicesandsupportsovertime.Perceivedqualityandtrendsovertimewereobtainedbyexaminingresponsesgivenbypeoplewhoreceivelong-termservicesandsupportstooneoftwosurveys:theNationalCoreIndicators(NCI)surveyortheParticipantExperienceSurvey(PES).28

Findingssuggestthatpeoplearesatisfiedwithinformationabouthowtoaccesslong-termservicesandsupportsandreceivetheservicestheyneed.PeoplealsoreportedthattheirLTSShelpedthemachievetheirpersonalgoalsandsupportedtheirhealthandwell-being.Inaddition,findingsfrompeoplewhousetheConsumer-DirectedServices(CDS)optionsuggestthatpeoplewhodirecttheirservicesandsupportshaveahighdegreeofawarenessabout

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choosingthestaffthathelpthemandaremorelikelythanpeoplewhodonotuseCDStochoosethestaffthathelpthem.

Thereportalsosuggestsspecificareasforimprovementincludingenhancingopportunitiesforpeopletohavechoice,control,andautonomyovertheirservicesandsupports.Whileimprovingchoice,control,andautonomyarebroadgoalstoachieve,thereportidentifiedspecificopportunitiestoimprovelong-termservicesandsupports,includingincreasingaperson’sautonomytotakerisks,andhavingachoiceaboutthestaffwhohelpthem.29

c. Wisconsin “Personal Experience Outcomes Integrated Interview and Evaluation System (PEONIES)” 30

WisconsinhasdevelopedtoolsformeasuringoutcomesandqualityincommunitybasedLTSSsettingsbasedon“PersonalExperienceOutcomes.”Suchoutcomemeasurementtoolsseektoaccountforthewidevarietyofpreferencesandexpectationsthatseniorsandpersonswithdisabilitiesmayhaveforthesupportandassistancetheyrequiretoliveincommunitysettings.

Thesepersonalexperienceoutcomesaremeasuredusingindividualgoals:

• IdecidewhereandwithwhomIlive.

• Imakedecisionsregardingmysupportsandservices.

• IdecidehowIspendmyday.

• IhaverelationshipswithfamilyandfriendsIcareabout.

• Idothingsthatareimportanttome.

• Iaminvolvedinmycommunity.

• Mylifeisstable.

• Iamrespectedandtreatedfairly.

• Ihaveprivacy.

• Ihavethebestpossiblehealth.

• Ifeelsafe.

• Iamfreefromabuseandneglect.

Wisconsinassertsthatmeasuredoutcomesareintendedtohelpcaremanagersandconsumersworktogethertomakesureservicesaresupportingthethingsthataremostimportanttotheconsumerandtomonitorandimprovequality.Understandingoutcomesalsoensuresthattheprogramsthestatefundsarehelpingpeopleachievethequalityoflifetheydesire.

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d. Personal Outcome Measures developed by the Council on Quality and Leadership (CQL).31

CQLisfocusedoncommunityagencies,andoffersproductstoassistinvestigatorsindevelopingqualitymeasurestodeterminewhetherservicesensureconsumerchoice,participant-direction,andindividualsatisfaction.Thesystemsaskconsumersappropriatequestionsaboutconsumer-choice,participantdirectedservices,andconsumerexperienceandsatisfaction.(PleasenotethatCQLprovidesconsultationonperson-centeredqualitymeasurement;measurementtoolsarealsoavailableforpurchase.However,someinformationisfreeanddownloadablefromtheorganization’swebsite.)

e. Money Follows the Person (MFP) Quality of Life Survey (QoL)

TheCenterforMedicaid,CHIPandSurvey&Certification(CMCSC)calledfordevelopmentofTheMoneyFollowsthePersonQualityofLifeSurvey(QoL)in2007.Thetargetpopulationforthesurveyincludespeoplewithdisabilitiesandlong-termillnesseswhoaretransitioningfrominstitutionalizedcaretoacaresettinginthecommunity.Theinstrumentisdesignedtomeasurequalityoflifeinsevendomains.(SeeAttachmentA.)Thesurveyisadministeredtoparticipantsatthreepointsintime—justpriortotransition,about11monthsaftertransition,andabout24monthsaftertransition.Thegoalofthesurveyistoprovidestandardcross-disabilityperformancemetricsforpeoplewithphysicaldisabilities,cognitivedisabilities,intellectualimpairments,and/ordisabilitiesduetomentalillness.TheassessmentenablescomparisonsacrossHCBSprogramsforthesetransitioningbeneficiaries.32

State Advocates’ Role in Identifying Managed LTSS Outcome Measures

AlthoughnonationallytestedandvalidatedmanagedLTSSoutcomemeasuresyetexist,advocateshaveaccesstothesignificantworkpreviouslydiscussedthatsetsoutbothimportantqualitydomainsandconstructs,andareasinwhichinformationshouldbecollected.Moreover,anumberofstatesarealreadyusingsomeexistingmanagedLTSSoutcomesurveysthatincorporatekeyconceptsrequiredtomeasuretheeffectivenessofmanagedLTSS/HCBS.Untilnationaloutcomesurveysareavailable,stateadvocatesshouldconsiderqualitymeasurementrecommendationsfromthesenationalresearcheffortsalongwithexistingsurveysandrelatedtools.

Core Managed LTSS/HCBS Outcome Measurement Principles

ThefollowingcoreprinciplesareintendedtohelpadvocatesidentifyandevaluatekeymanagedLTSSqualitymeasures.

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TheMeasurementProcessisPerson-Centered

Person-centeredmeansthatallaspectsofLTSSplanning,implementation,andevaluationaredirectedbytheindividualwithlong-termsupportneedstothemaximumextentpossible,orbyanotherpersonimportantinthelifeoftheindividualwhomsheorhehasfreelychosentodirecttheprocess.Aperson-centeredapproachaimstoidentifytheindividual’sstrengths,capacities,preferences,needs,anddesiredoutcomes.

AnessentialelementforevaluatingtheimpactoftheshiftofLTSStomanagedcareenvironmentswillbethemeasurementofLTSSoutcomesfromperson-centeredperspectivesincludingconsumerfunctioning(e.g.,availabilityofsupportwitheverydayactivitieswhenneeded;thepresenceoffriendships;maintenanceoffamilyrelationships),consumerexperience(e.g.,respectfultreatmentbydirectserviceproviders;opportunitiestomakechoicesaboutproviders;opportunitiestomakechoicesaboutservices),andprogramperformance(e.g.,receiptofallservicesinthecareplan).

MeasurementExaminesQualityofLifeOutcomes

Measurementshouldevaluatequalityoflifeoutcomesrelatedtotheindividual’slivingsituation,choiceandcontrol,accesstopersonalcare,experienceofrespectanddignity,extentofcommunityintegration,participation,andinclusion,overalllifesatisfaction,healthstatus,andachievementofperson-centeredgoals.Othermeasuresincludebutarenotlimitedtotheeffectivenessofsupportarrangements,availabilityofself-directedsupports,financialmanagementservicesincludingindividualbudgeting,personalfinanceandassetbuilding,relationshipbuildingandmaintenance,education,employment,participationinreligiousandspiritualactivities,andculturalpreferences.MeasurementOutcomesInformImprovement

AmeasurementandevaluationsystemforLTSSmustincorporateprinciplesofcontinuousqualityimprovement.ContinuousQualityImprovement(CQI)isanongoingprocessmeasuringandimprovingindividualoutcomesandtheprovisionofperson-centeredLTSS.CQIusesqualitativeandquantitativemethodstoidentifyneededimprovementsinbothprocessesandoutcomes,implementimprovements,andsubsequentlymeasuretheimpactofimprovementsinLTSSsystemsandindividualqualityoflife.ThebasicelementsofCQI:

• System designdefinesperformancemeasuresthatwillbeusedtoevaluatequalityandidentifyareasforintervention,specifieshowdatawillbecollectedtomonitorprogramimplementation,andembracesqualityimprovement,includingthedevelopmentofproactivemechanismstoavoidqualityproblems.

• Discoveryinvolvesthereviewandanalysisofperformancemeasuresandotherobjectivedata.

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• Remediationisimprovingoverallquality,includingbothfixingtheindividualqualityproblemswhentheyoccur,andimplementingthesystemicchangesneededtoreachrequiredbenchmarks.

• Improvementimplementslong-term,system-widesolutionstoanyqualityproblemsrevealedduringdiscovery,andcollectsandappliesdatatomeasureimprovement.33

Selecting Measures

Whileitisbeyondthescopeofthispapertodiscussindetailthecomplex,step-by-stepprocessestypicallyusedtoselectandadoptmeasures,theInstituteofMedicine(IOM)oftheNationalAcademyofScienceshasprovidedsomeguidance,includingthefollowingselectioncriteriathatmaybehelpfultoadvocatesastheyidentifymeasuresthataremostimportantforuseintheirstate.34

TheIOMgroupsthreecriteriaaccordingtothesubjectofmeasurement:

• Impact.IntheLTSScontext,theimpactoftheprovidedservice,forexample,onqualityoflife,mustbeconsidered.

• Meaningfulness.Themeasures(s)shouldbeunderstandablebyconsumers,advocates,andpolicymakersandrepresentconcernsandissuesthatmattertothem.

• Susceptibility.Theextenttowhichmeasuresareinfluencedbythehomeandcommunity-basedcaresystems.

ThemeasuresshouldhavesomethingtodowithaspectsofLTSSthatvariousstakeholders,includingpolicymakers,caninfluence.Forexample,policymakersshouldbeabletotakeactiononspecificproblemsthatarerevealedbycollecteddata.

OtherIOMcriteriapertaintothescientificsoundnessofthemeasure:

• Validity.Themeasureshouldhavefacevalidity(i.e.,itshouldmakesenselogically);itshouldcorrelatewellwithothermeasuresofthesameaspectsofsupportandcare(constructvalidity)andcapturemeaningfulaspectsofsuchsupportandcare(contentvalidity).

• Reliability.Themeasureshouldproduceconsistentresultswhenitisusedrepeatedlyandwithdifferentgroups,especiallyovertime.

• Feasibility.Feasibilityrefers,forexample,tothepracticalabilitytoimplementthemeasuresuchasavailabilityofmeasureprototypes,theavailabilityofrequireddata,andthecostorburdentocollectthedata.

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Data Sources

Asadvocatesconsiderandevaluatevariousoutcomemeasures,theyshouldbeawareofthefollowingdatasourcesthatmayprovideinformationcalledforbyvariousmeasurequeries.

• Program data.VariousMedicaidLTSS/HCBSprogramshavehistoricallybeenrequiredtocollectprogramdataaspartoftheirongoingoperations.Forexample,providerfiles,enrollmentdata,serviceplanningrecords,caremanagementtrackingprocesses,grievanceandcomplaintdata,andauditinformationarebeingcollectednowbyMedicaidLTSS/HCBSprograms.AdvocatesshouldcallforsuchdatatoberequiredofmanagedLTSS/HCBSprograms.Thesedatasourcesthencanbedrawnupontofulfillcertainoutcomemeasurementrequirements.

• Utilization data.ThisdatarelatestoservicespaidforbyMedicaidorothergovernmentprogramsandincludes,forexample,cost-per-member-per-month,hospitalizationratesforpeoplewithcertainconditionsorimpairments,andfrequencywithwhichdurablemedicalequipmentisprovided.

• Assessment data.Currently,collectionofassessmentdataishamperedbythefactthatstatesdonotuseauniformassessmentinstrument;thereforeitisdifficulttocompareassessmentoutcomes.However,underthedualsdemonstrationsandtheBalancingIncentivesProgram,eachparticipatingstateisrequiredtodevelopauniformassessmenttool,whichwilleventuallymakeitpossibletocollectdatausingthesetoolsandtomeasurecertainLTSSoutcomesacrossregionsofastateor,insomecases,fortheentirestate.

• Survey and interview data.CoreelementsofMedicaidLTSSservicessuchascontrol,respect,anddignityarefrequentlymeasuredthroughsurveys.Althoughsurveyscollectimportantinformation,thedatatheycollectmayalsopresentsomechallengessuchasdifficultyinscalingtheresults,linkingtootherdatasourcessuchasutilizationandcostdata,samplesize,andthecostandtimeassociatedwithdatacollectionandanalysis.Nevertheless,surveyscanbekeymethodstoidentifyproblemareasthatrequireimmediateinterventionorimprovement.

Generating Reports

Usingthedatasourcespreviouslydescribed,advocatesshouldurgethatspecificreportsbegeneratedthatrespondtotheselectedmeasures.Suggestedreporttopicsinclude:

• Personcenteredgoaloutcometrendsagainstcostandserviceutilizationforeachmajordisabilitygroupacrossthelifespan

• Beneficiarysatisfactionincludingidentificationofunmetneed

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• Snapshots,changesovertime,andlong-termtrendsinnumberofenrolleesindifferentLTSSsettings

• HCBSandinstitutionalexpendituresmonthly,quarterlyandannuallyasapercentageofoverallLTSSexpenditures

• AverageperpersonexpendituresinHCBSandNursingFacility(NF)settings

• AveragelengthofresidenceinHCBSsettings

• NumberofnewadmissionstoNFsover12monthsandaveragelengthofstay

• NumberofLTSSenrolleestransitionedfromNFstoHCBSsettingsover12monthsand,conversely,thenumberofenrolleesadmittedtoNFsfromHCBSsettings

• Summariesandtrendsoncomplaintsandappeals,especiallythoserelatedtocontinuityofcareandtransitionissues

Building Infrastructure Capacity

Whilecollectionofoutcomedataisrequiredtodriveoverallqualityimprovement,thecapacityofthevariousrelevantentities(includingstates,MCOs,andlocalserviceagencies)mustalsobeadequateinordertoensureeffectiveimplementation.Followingarecapacity-buildingrecommendationsrelatedtosystems,andtomonitoringandreporting.

IncorporationofPerson-CenteredFocusintoSystems

Inordertoensureeffectiveimplementationandevaluationoftheperson-centeredprocess,thefollowingspecificmechanismsmustbeinplaceattherelevantstate,MCOandlocalagencylevels:

• Principlesthatunderlietheperson-centeredprocessmustbeincorporatedintorelevantpolicies,mission/visionstatements,operationsdocuments,andmeasurementmechanisms.

• Staffatalllevels,andnotjustatthefront-enddirectorcustomerservicelevel,musthaveaconsistentunderstandingofperson-centeredprinciples,valuesandimplementationprocesses.

• Staffandleadershipmustreceiveongoingcapacity-buildingtrainingintheperson-centeredprocess.

MonitoringandReportingRequirements

1. Outreach/EnrollmentMonitoring

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StatesandMCOsmustmonitoroutreachandenrollmentprocessesandstructuresforadequacyofinformationandreferralintheno-wrong-doormodel,aswellascompliancewithrequirementsforadequateenrollmentprocesses.No-wrong-doorreferstosingleentrypointsystemsforaccessingLTSS/HCBSthatenableconsumerstoaccessservicesthroughoneagencyororganization.UnduebarrierstogainingaccesstoneededservicesandsupportsmustbeidentifiedandaddressedusingCQImethodspreviouslydescribed.

• AnyIndependentStateOmbudsmanthatoverseestheintegrationofLTSS/HCBSintomanagedcaremusthaveexperienceandexpertiseinperson-centeredLTSSprinciples,andthecapacitytoassistwiththeresolutionofbothindividualandsystemicproblemsrevealedbyCQIprocesses.

• TheresultsofqualitymeasurementsurveysandCQIoutcomesmustbemadeavailabletostakeholdersandthepublicinareadilyaccessibleandtransparentfashion.

2. RegularlyScheduledSiteVisits

StatesmustensurethatMCOsortheirdesigneesconductsitereviewsregularlyinordertogainaqualitativeunderstandingoftheenvironmentalcontextinwhichdataiscollectedandreported.MCOsmustvisitastatisticallyvalidrandomsampleofprovidersinthefollowingcategories:

• Residentialsettingsthatareownedbyprovidersmustbemonitoredandmeasured.

• Aggregatesettingssuchasdaytreatmentcenters,mentalhealth“clubhouses,”andothersmustbemonitoredtoensurethatthereisadequatecommunityaccessaccordingtotheperson-centeredplan.

• Asampleofperson-centeredplansmustbereviewedannuallyinthecontextofin-personparticipantinterviewsforfidelitytotheperson-centeredplanningprocess.

3. CriticalIncidentReporting

Criticalincidentreportingisawell-establishedqualitymanagementmechanisminclinicalcareandmustalsobeincludedinLTSS/HCBSqualitymanagement.Examplesofcriticalincidentsincludesexualabuse,suspiciousdeath,physicalabuse,neglect,seriousinjury,frequentcareproviderabsences,financialexploitation,orsuicideattempt.CriticalincidentreportscanbeusedtotrackbothpatternsandprevalenceofseriousadverseeventsamongLTSSbeneficiariesandtoinformstrategiesformanagingrisk,preventingerrors,andfocusingqualityimprovementefforts.StatesandMCOscanparseaggregatedincidentdatainavarietyofwaystoidentifyincidentsgeographicallybyregionorlocale,byprovideragency,orbytypeofincident.SuchmechanismsfortrackingincidentsmustbepartofMCOs’overallqualitymanagementsystem

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andtheymustmakedataavailabletostatesandotherinterestedpartiesincludingoversightagencies.35

4. EarlyWarningReporting

Methodsmustbedevelopedtoensurethatproblemsthatoccurbeforetheyareidentifiedthroughthemonitoringandreportingprocessespreviouslydescribedareresolvedproactively.SuchproblemstypicallyarisewhenclinicalandLTSS/HCBSassessmentsaresiloed,andthereforepoorlycoordinated.Forexample,deterioratingwheelchairseatingcanleadtopressureulcers,whichlikelywillbetreatedclinically,yettheunderlyingproblemofinadequate,worndurablemedicalequipmentmaybeoverlooked,alongwiththenegativeimpactofreducedmobilityonqualityoflifeandbeneficiarychoiceandsatisfaction.

5. ComplaintReporting

AmechanismforrespondingtocomplaintsthatisfreeofconflictofinterestisanessentialcomponentofanyhealthcareandHCBSdeliverysystem.Mechanismsfortrackingtrendsinkeycomplaintareasmustbeapartoftheoverallqualitymanagementsystem.

Suggested Action Steps

StatesthatareplanningtomovetomanagedLTSSmustdeterminewhatqualitymeasureswillbeusedtoidentifyandevaluateoutcomesforindividualbeneficiaries.Advocatescanusethefollowingsuggestedmethodstoactivelyengagewiththisdecision-makingprocess.

• RequesttoseeanysurveysthatthestateisusingcurrentlytomeasureLTSSbeneficiaryoutcomesforMedicaidHCBSwaiverprograms36

• Reviewexistingsurveystodetermineifthedatabeingcollectedmeetsthesuggestedcoreprinciplesandhewstothedomainsandrelateditemsrecommendedinresearchbythenationalgroupscitedabove

• Identifyareaswhereadditionalsurveyelementsareneeded

• AdvocateforthestatetoestablishandperiodicallyconveneforumstosolicitandconsiderstakeholderandbeneficiaryinputonLTSSqualitymeasures

• SeekstateandMCO-levelpoliciesandprocedures,andcontractlanguagethatwillensureanappropriatelevelofmanagedLTSSqualitymeasurement

• Introducerecommendedindividual-levelqualitymeasurestolocal/regionalMCOsplanningtotakeoverprovisionofLTSS

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Inalloftheseactivities,advocatesshouldrecognizeboththepromiseandthelimitationsofqualitymeasures.Sincequalitymeasuresrelyondataaggregatedsometimeafterindividualoccurrences,qualitymeasurescannotsubstituteforbeneficiaryappealrightsandothersystemicprotectionsthatprovidetimelyremediesforbeneficiariesotherwiseatriskofbadoutcomes.

Conclusion

ThetrendtowardprovidingMedicaidLTSSthroughmanagedcaresystemsisgrowingrapidlyanditislikelythateverystatewilldeliverLTSSasamanagedserviceinthenearfuture.ShiftingLTSStoMCOspresentssomepossibleopportunitiessuchasenablingexpansionofservicestomorebeneficiaries,increasingthetypesofservicesthatareavailable,andpotentiallyspurringrebalancingofLTSSfundingsothatmoreresourcesareprovidedforHCBS.However,advocatesalsohavearticulatedsignificantconcerns.ThewidespreadlackofexperiencedeliveringLTSSonthepartofmanyMCOs,andthespeedwithwhichthetransitionofsuchservicestomanagedsystemsistakingplace,leaveinsufficienttimeforMCOstoprepareadequatelytoservealargeinfluxofpeoplewithdisabilitiesofallages.Moreover,onitsface,thefundamentalstructureofmanagedcareraisesquestionsaboutwhetherornottheindividualneedsofbeneficiarieswillconflictwiththecostcontainmentgoalsandpracticesofMCOs.Forthesereasons,advocates,alongwithconsumerswhowillexperiencethetransitionfirsthand,mustengagewithstates,MCOs,andprovidersinordertofosteraccountability,promotedisabilityliteracy,andensurethattheprincipleofperson-centerednessisembeddedineachofthekeysystemsofservice.

Oneofthecoreaspectsofengagementwillbeidentification,promotion,adoptionandimplementationofadequateLTSSoutcomemeasures,whicharecriticaltodeterminingtheeffectivenessofthenewsystemsindeliveringpromisedservicesandinprotectingtherightofpeoplewithdisabilitiesofallagestolivesafelyandwithdignityinthecommunityinsettingsoftheirchoice.

Attachments

Attachment AComparisonChart:LTSS/HCBSDomainsandMeasures

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Endnotes1TheMedicaidprogramallowsforthecoverageofLongTermCareServicesthroughseveralvehiclesandoveracontinuumofsettings.ThisincludesInstitutionalCareandHomeandCommunityBasedLongTermServicesandSupports.InMedicaidcoverage,institutionalservicesreferstospecificbenefitsauthorizedintheSocialSecurityAct.Thesearehospitalservices,IntermediateCareFacilitiesforPeoplewithMentalRetardation(ICF/MR),NursingFacility(NF),PreadmissionScreening&ResidentReview(PASRR),InpatientPsychiatricServicesforIndividualsUnderAge21,andServicesforindividualsage65orolderinaninstitutionformentaldiseases.CommunityBasedLong-TermServices&Supportsaimtoprovidesustainable,person-drivenlong-termsupportsystemsinwhichpeoplewithdisabilitiesandchronicconditionshavechoice,controlandaccesstoafullarrayofqualityservicesthatassureoptimaloutcomes,suchasindependence,healthandqualityoflife.SeeCMS(CenterforMedicareandMedicaidServices),“Long-TermServicesandSupport,”http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Long-Term-Services-and-Support.html(October1,2012).

2CMS,“Long-TermServicesandSupport.”

3PaulSaucier,etal.,The Growth of Managed Long-Term Services and Supports (MLTSS) Programs: A 2012 Update,preparedforCMS,pp.6-24,July,2012,http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Delivery-Systems/Downloads/MLTSSP_White_paper_combined.pdf(October1,2012).4BoardonHealthcareServices(HCS),“CurrentandFutureStateofPerformanceMeasurementandReporting,”inPerformance Measurement: Accelerating Improvement (Pathways to Quality Health Care Series),2006,http://www.nap.edu/openbook.php?record_id=11517&page=40(October1,2012).

5H.StephenKaye,Ph.D,CenterforPersonalAssistanceServices,UniversityofCaliforniaSanFrancisco,beforetheCaliforniaSenateHumanServicesCommittee,March27,2012.

6MaureenBoothandJulieFrailich,“PerformanceMeasurement:ManagingandUsingHomeandCommunity-BasedServicesDataforQualityImprovement,”MuskieSchoolofPublicService,UniversityofSouthernMaine,http://muskie.usm.maine.edu/Publications/DA/Performance-Measurement-HCBS.pdf(October1,2012).

7NationalQualityForum,“MeasuringHealthcareQualityfortheDualEligibleBeneficiaryPopulation,MeasureApplicationPartnership,FinalReporttoHHS,”June,2012,http://www.qualityforum.org/Setting_Priorities/Partnership/Duals_Workgroup/Dual_Eligible_Beneficiaries_Workgroup.aspx(October1,2012).

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8KaiserCommissiononMedicaidandtheUninsured,“PeoplewithDisabilitiesandMedicaidManagedCare:KeyIssuestoConsider,”February,2012,http://www.kff.org/medicaid/upload/8278.pdf.(October1,2012).

9NationalQualityForum,“MeasuringHealthcareQuality.”

10NationalQualityForum,“MeasuringHealthcareQuality.”

11AgencyforHealthcareResearchandQuality(AHRQ),Environmental Scan of Measures for Medicaid Title XIX Home and Community-Based Services.AHRQPublicationNo.10-0042-EF,June2010,http://www.ahrq.gov/research/ltc/hcbsreport/hcbssum.htm(October1,2012).

12KaiserFamilyFoundation,“AnUpdateonCMS’sCapitatedFinancialAlignmentDemonstrationModelforMedicare-MedicaidEnrollees,”April2012,http://www.kff.org/medicaid/upload/8290.pdf(October1,2012).

13CMS,“CMSLettertoStateMedicaidDirectors:QualityFrameworkforHomeandCommunityBasedServices,”February17,2004,http://www.hcbs.org/moreInfo.php/doc/952(October1,2012).

14NationalQualityForum,p.24.Thereportalsonotesthat:“BecauseHCBSarelargelynon-medical,theynecessarilyoperatewithinadifferentqualityparadigmthanthehealthsystem.Manyoftheprimarydomainsofhigh-quality,person-centeredHCBScanbetracedbacktothedisabilityrightsmovementandthehistoricalneedtoassureadequatequalityoflifeforindividualswithdisabilitiesleavinginstitutionalcaresettings.”

15NationalQualityForum,p.25.NQFreviewedatotalof148potentialHCBSmeasuresfromthreeprimarysources:EnvironmentalScanofMeasuresforMedicaidTitleXIXHomeandCommunity–BasedServices(June2010),RaisingExpectations:AStateScorecardonLTSSforOlderAdults,PeoplewithDisabilities,andFamilyCaregivers(September2011),andNationalBalancingIndicatorContractor(October2010).

16Itshouldbenotedthatmeasuresexaminingtheextenttowhichbeneficiariesobtainappropriateservicesdonotalsoquerywhetherornotpeoplewithdisabilitiesencounterlackofdisabilityawarenessandliteracyamonghealthcareproviders,whichcanaffecthealthoutcomes.MeasuresalsodonotincludearchitecturalandprogrammaticbarrierstocaresuchaslackofaccessiblediagnosticorexamequipmentorneededaccommodationssuchasAmericanSignLanguage(ASL)Interpreters,liftingassistance,oradditionaltimeforanexamorconsultation.MeasuresexaminingtheseissuesastheyaffecthealthoutcomesshouldbeincludedamonganyfinalLTSS/HCBSsurveyanddatacollectionmethods.

17NationalQualityForum,ExhibitH.

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18AHRQ,EnvironmentalScanofMeasures.

19HeatherYoung,etal.,“MeasurementOpportunitiesandGaps:TransitionalCareProcessesandOutcomesAmongAdultRecipientsofLong-TermServicesandSupports,”preparedforLong-TermQualityAlliance(LTQA),December,2011,http://www.ltqa.org/wp-content/themes/ltqaMain/custom/images//TransitionalCare_Final_122311.pdf(October1,2012).

20H.StephenKaye,Ph.D,testimony,March27,2012.

21H.StephenKaye,Ph.D.,“SelectedInventoryofQuality-of-LifeMeasuresforLong-TermServicesandSupportsParticipantExperienceSurveys,”CenterforPersonalAssistanceServices,UniversityofCaliforniaSanFrancisco,www.dredf.org/Personal-experience-domains-and-items.pdf,(December2012).

22CMShasongoinginitiativestosupportandfacilitatecontinuousqualityimprovementacrossallHCBSprograms.SeeCMSwebsitehttp://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Quality-of-Care/Quality-of-Care-HCBS.html.Examplesinclude:

• HCBSQualityMeasurementProjects:FourkeyqualitymeasurementprojectsarecurrentlyunderwayinHCBSprograms.Theprojectstestavarietyofmeasurementsetsthataddressqualityoflife,health,satisfaction,impactofprogramdesign,andsystembalancing.Effortstocoordinatetheoutcomesofthoseprojectsarealsobeingconsidered.

• Cross-CuttingQualityEffortsinHCBS:HCBScross-cuttingteamsworktoalignqualityacrossHCBSprogramauthorities.Cross-cuttingqualitygoalsarefocusedonadvancingqualityintegration,continuousqualityimprovement,andinformationtechnology.

• NationalTechnicalAssistance:UndertheNationalQualityImprovementinitiative,statesmayrequesttechnicalassistancefromtheCMS-designatednationalTAprovider,theNationalQualityEnterprise(NQE).TheNQEprovideson-siteassistancetostatestoaddressspecificconcernssuchasdevelopmentandimplementationofHCBSqualityimprovementstrategies,sampling,evidencegathering,andaddressingqualityissuesthatariseinregionalofficewaiverqualityreviews.

23“AgencyInformationCollectionActivities:ProposedCollection;CommentRequest,”FederalRegister77:97(May18,2012)p.29644-29645,http://www.gpo.gov/fdsys/pkg/FR-2012-05-18/html/2012-12080.htm(October1,2012).

24NationalAssociationofStatesUnitedforAgingandDisabilities(NASUAD),AnnualSummaryReport2009-2010,http://www.nasddds.org/pdf/2009-2010NCI-Report.pdf(October1,2012).

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25NationalCoreIndicatorswebsite:http://www.nationalcoreindicators.org/(October1,2012).

26NASUAD,“ParticipantExperienceSurvey,”http://www.nasuad.org/documentation/nasuad_materials/The%20Use%20of%20Participant%20Experience%20Survey.pdf(October1,2012).

27NASUAD,“ParticipantExperienceSurvey.”Acopyofthesurveyusers’guidecanbefoundathttp://www.innovations.ahrq.gov/content.aspx?id=1443.

28TexasDepartmentofAgingandDisabilityServices,Long-TermServicesandSupportsQualityReview2010(January2011):8.

29TexasDepartmentofAgingandDisabilityServices,Long-TermServicesandSupportsQualityReview2010(January2011):9.

30SeeCenterforHealthSystemsResearchandAnalysiswebsite:http://www.chsra.wisc.edu/peonies/personal-experience-outcomes.htm(October1,2012).

31TheCouncilonQualityandLeadership,http://www.thecouncil.org/index.aspx(November9,2012).

32MattSloanandCarolIvan,“MoneyFollowsthePersonQualityofLifeSurvey,”preparedforCMS,2007,http://www.mathematica-mpr.com/publications/pdfs/health/MFP_QoL_Survey.pdf(October1,2012).

33SaraGalantowicz,“ImplementingContinuousQualityImprovement(CQI)inMedicaidHCBSPrograms,”ThomsonReuters,January2010,http://www.dpw.state.pa.us/ucmprd/groups/webcontent/documents/document/d_007056.pdf.(October1,2012).

34CommitteeontheNationalQualityReportonHealthCareDelivery,Envisioning the National Health Care Quality Report,2001,http://www.nap.edu/openbook.php?isbn=030907343X(October1,2012).

35TarynBowe,etal.,“ManagingandUsingHomeandCommunity-BasedServicesDataforQualityImprovement,”CommunityLivingExchange,RutgersCenterforStateHealthPolicy,p.20,April2006,http://www.hcbs.org/files/91/4507/Reporting_FINAL_revised_ALL.pdf(October1,2012).

36Iftherequestisdenied,advocatescanfileaformalFreedomofInformationAct(FOI)request.

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ATTACHMENT A: Comparison Chart -- LTSS/HCBS Domains and Measures

Measure Application Partnership/National Quality ForumSelected Potential Measures for Medicaid Home and Community-Based Services (HCBS)

from Three SourcesJune 2012

1) Framework: HCBS Scan (AHRQ, Thomson Reuters)

DOMAIN Measures/Constructs

ClientFunctioning • Degreetowhichconsumersexperienceanincreasedleveloffunctioning.

• UnmetneedinADLs/IADLs(11measurestotal).• Degreetowhichpeopleexpresssatisfactionwith

relationships.• Satisfactionwithclosefriends.• Satisfactionwithrelationshipswithparents,siblings,and

otherrelatives.• Participantsreportingunmetneedforcommunity

involvement.• Degreetowhichpeoplewithidentifiedphysicalhealth

problemsobtainappropriateservicesanddegreetowhichhealthstatusismaintainedandimproved.

ClientExperience • Degreetowhichconsumersreportthatstaffaresensitivetotheircultural,ethnic,orlinguisticbackgroundsanddegreetowhichconsumersfelttheywererespectedbystaff.

• Degreeofactiveconsumerparticipationindecisionsconcerningtheirtreatment.

• Casemanagerhelpfulness.• Degreetowhichconsumersweresatisfiedwithoverall

services.• Servicesatisfactionscales:homeworker;personalcare;

home-deliveredmeals.

ProgramPerformance • Abilitytoidentifycasemanager.• Abilitytocontactcasemanager.

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2) NQF/MAP—Framework: LTSS Scorecard (AARP, The Commonwealth Fund, The SCAN Foundation)

ChoiceofSettingandProvider

Toolsandprogramstofacilitateconsumerchoice(AARPScorecard—compositeindicator,scale0-4).

QualityofLifeandQualityofCare

• Percentofadultsage18+withdisabilitiesinthecommunityusuallyoralwaysgettingneededsupport.

• Percentofadultsage18+withdisabilitiesinthecommunitysatisfiedorverysatisfiedwithlife.

SupportforFamilyCaregivers

Percentofcaregiversusuallyoralwaysgettingneededsupport.

3) Framework: National Balancing Indicators (Abt Associates, IMPAQ International)

Sustainability ProportionofMedicaidHCBSspendingofthetotalMedicaidLTCspending.

Self-determination/Person-centeredness

Availabilityofself-directionoptions.

CommunityIntegrationandInclusion

Waiverwaitlist(Thewaitlistmeasuremaybeinappropriateasameasureofcommunityintegrationandinclusionforstatesthataredroppingwaitlistswhenbeneficiariesmovetomanagedcare.)

Prevention Proportionofpeoplewithdisabilitiesreportingrecentpreventivehealthcarevisits(individual-level).

CoordinationandTransparency

• Proportionofpeoplereportingthatservicecoordinatorshelpthemgetwhattheyneed(individual-level).

• CoordinationbetweenHCBSandinstitutionalservices.

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Agency for Healthcare Research and Quality (AHRQ)Quality Measures for Medicaid Home and Community-Based Services

June 2010

DOMAIN Measures/Constructs

ClientFunctioning: • Changeindailyactivityfunction.• Availabilityofsupportwitheverydayactivitieswhenneeded.• Presenceoffriendships.• Maintenanceoffamilyrelationships.• Employmentstatus.• Schoolattendance(childrenonly).• Communityintegration.• Receiptofrecommendedpreventivehealthcareservices.• Seriousreportableadversehealthevents.• Avoidablehospitalizations.

ClientExperience: • Respectfultreatmentbydirectserviceproviders.• Opportunitiestomakechoicesaboutproviders.• Opportunitiestomakechoicesaboutservices.• Satisfactionwithcasemanagementservices.• Clientperceptionofqualityofcare.• Satisfactionandchoiceregardingresidentialsetting.• Clientreportofabuseandneglect.• Availabilityofsupportforresilienceandrecovery(mental

healthservicerecipientsonly).

ProgramPerformance: • Accesstocasemanagementservices.• Availabilityofcarecoordination.• Receiptofallservicesinthecareplan

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Center for Personal Assistance ServicesUniversity of California San Francisco

California Senate Human Services CommitteeMarch 27, 2012

DOMAIN Measures/Constructs

Quality,adequacy,andimpactofservices

a.Basicsatisfactionmeasuresrelatedtoquality,timeliness,appropriatenessb.Adequacyofservices:Didthepersongetenoughhelp,orweresomeoftheirneedsunmet?c.Consumerchoice,control,directionofservicesd.Consequencesofhelpreceivedornotreceived:

i.Didgettingthehelpenablethepersontoparticipateinsocial,cultural,and/oreconomicactivities?ii.Didlackofhelphindersuchparticipation?iii.Didproblemswithhelphinderparticipation,e.g.,didpersonmissappointments,engagements,work,etc.,becausehelpdidnotshowup,ordidnotarriveontime?

e.Unmetneedforservicesinthepopulationatlarge,notjustamongrecipients

Health,functional,andhealthcare-relatedoutcomes:

a.Healthstatusincludingmentalhealth,functionalabilitiesb.InjuriesorsecondaryhealthconditionstypicallyexperiencedbyLTSSrecipients,suchasfalls,burns,skinulcers,orinvoluntaryweightlossc.Maintenanceofcommunityliving;i.e.,avoidanceofinstitutionalizationd.Healthcareutilization,includingavoidablehospitalization,ERvisitse.Mortality

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DOMAIN Measures/Constructs

“Qualityoflife”andsocialparticipationmeasures:(The11LTSS-relatedqualityoflifedomainsidentifiedbyRosalieKane:Kane,R.A.(2001).Long-TermCareandaGoodQualityofLife:Bringingthemclosertogether.TheGerontologist,41(3),293-304.)

The11LTSS-relatedqualityoflifedomainsidentifiedbyRosalieKaneinclude:a.Autonomy/choiceb.Meaningfulactivity,whichmayincludeemploymentforworking-ageadultsc.Relationshipsd.Individualitye.Privacyf.Dignityg.Senseofsafety,security,andorder

Family-andfamilycaregiver-focusedoutcomes

a.Adequacyofcaregivingsupportservicesb.Caregiving-relatedemotionalstressesc.Caregiverphysicalinjuriesd.Caregiving-relatedfinancialstressese.Interfaceoffamilycaregivingandpaidhelp

Paidpersonalassistanceworkerandworkforce-relatedoutcomes

a.Wages,benefits,workhoursandconditions,turnoverb.Trainingand/orcertificationc.Injuriesd.Jobsatisfactione.Localavailabilityofworkerstomeetconsumerdemand

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Money Follows the Person (MFP) Quality of Life Survey (QoL)

DOMAINS

• Livingsituation

• Choiceandcontrol

• Accesstopersonalcare

• Respect/dignity

• Communityintegration/inclusion

• Overalllifesatisfaction

• Healthstatus

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