Table Of Content

AGING 2000 CASE STUDY by ReneeRose Shield,Ph.D. and EdwardW.Zesk December, 1997 Contents CaseStudy(pages1-68) Attachments(inaccordionfile) 1. "WhoWeHaveHeardFrom":a1991reportdetailingthebreakdownofinterview participants 2. "Aging2000:DirectionsforElderCare inRhodeIsland,"December1991, ExecutiveSummary 3. Aging2000CareIntegrationProject(1993) 4. Aging2000CareTool(1994) 5. "BackgroundandGuidelinesforAging2000DemonstrationProjects"(January1994) 6. Aging2000"DemonstrationPhase"InformationPacket(1994) 7. PatientInformationPacket:Asampleofdemonstrationparticipantenrollment materials(1994) 8. VolunteerTrainingMaterials:ApacketofmaterialsusedintrainingVolunteer PatientRepresentativesduringtheDemonstrationPhase(1994) 9. FinalProgressReportforTheJohnA.HartfordFoundation(January26,1996) 10.MissionStatement(November9,1994) 11."OrganizationalOptionsforAging2000"(March8,1995) 12.Aging2000StrategicPlan(November21,1995) 13.MemorandumontheHistoryofAging2000'sEducationTaskForce,FocusGroup andEducationPlan(June1,1995) 14.FinalReporttotheRIDepartmentofElderlyAffairsontheManagedCare Workshops(June24,1996) 15."It'sYourChoice"Report#1(April1996) 16.MemorandumofUnderstandingbetweenAging2000andhealthplans;and supportingmaterialsrelatingtotheproject(June1996) 17."It'sYourChoice"Report#2(April1997) 18.LetterfromPhyllisTorda,NCQA,toEdZeskregardingMedicarereportcard proposal(May7,1996);revisedversionoftheproposal(February26,1997) 19.MemorandumofUnderstandingbetweenAging2000,LongTermCareQuality, BrownUniversityCenterforGerontologyandHealthCareResearch,Physicians QualityCare,andparticipatingnursinghomes;andsupportingmaterialsrelatingto theRhodeIslandQualityCareConsortium(June1996) 20.PeerMentorProgrammaterials(1996-1997) 21.RIGeriatricEducationCentermaterials(1996-1997) 22.HealthplanmagazineandEli'sMedicareRiskReportarticles(1996) 23.AdHocCommitteeonAging2000,NotesofMarch20,1997,atHospiceof Michigan 24.Aging2000ConsumerEducationProgramsandVolunteerOpportunities(1997) 25."Aging2000:HealthCareReformthroughConsumerEmpowerment":an unpublishedarticlebyRachelFilinson,Ph.D. 26.ProjectSummaryDescription:HealthCareAnti-Fraud,WasteandAbuseCommunity VolunteerDemonstrationProject 27. Summary:TheFeasibilityofMedicareConsumerCooperatives(March1997) 28.TheRhodeIslandQualityofCareConsortiumreportandpresspackage(November 1997) 29.PressClippingsandJournalArticles(June1991-November1997) 30.Aging2000AnnualReports,samplenewsletters,andmembershipform(1994-1997) 31.Aging2000StrategicPlan,1998-2000,ExecutiveSummary(November1997) AGING2000 CASESTUDY by ReneeRoseShield,Ph.D. and EdwardW.Zesk December,1997 GENERATIONOFTHECONCEPT. Inlate1989,asmallgroupofpeoplemetanddiscussedplanstocreatea localresearchprojectasthefirststepinimplementingstate-widereforminhealth carefortheelderlyofRhodeIsland. IraMagaziner,aninternationalbusiness consultantwhowasknowninRhodeIslandforhavingdesignedthe"New Curriculum"atBrownUniversityinthe1960s'convenedthegroupattheFaculty ClubatBrown. HeenlistedtheaidoftheReverendCharlesBaldwin,(retired) UniversityChaplainatBrown,whohadworkedwithhimoncurriculumreformand theanti-Vietnammovement. Baldwinwasareformerinhisownright. Withothersinthe1960sand 70s,hehadformedHospiceCareofRhodeIsland,andcreatedtheInterfaith HealthCareMinistriestoteachpastoralcarethroughaconsortiumofthereligious organizationsinthestate,thehospitalsandthemedicalprogramatBrown MagazinerandBaldwinwereconcernedthatthesteepriseinhealthcare costsintheUnitedStateswasasevereproblemforthenationifitcontinued 1 unabated. Theytalkedwithleadersinthestate-thedirectorsofthestate DepartmentsofElderlyAffairsandHealth,variousseniormembersofthe businesscommunity,theGovernor,thecongressionaldelegation,thedeanofthe BrownMedicalSchool--andtheyhadthesameconcerns.Magazinerdecidedto hireasmallstafftogoaheadwithhisidea,andthepeoplehetalkedtoformed theinitial20-memberOrganizingCommittee. TheinitialstaffmemberswereReneeRoseShield,Ph.D.,acultural anthropologist;JoanRetsinas,Ph.D.,amedicalsociologist;EdCaron,an attorneyandformerinsuranceexecutive;MargeTarmey,apoliticalaidetoa formergovernor;MarshaD.Fretwell,M.D.,acrusadinggeriatrician;Christine Heenan,ayoungformerpolicyaidetothegovernor;andChipYoung,apolitical writerwithnon-profitpublicrelationsexperience. ShieldandRetsinashad recentlypublishedbooksaboutnursinghomecare,andFretwellhadwritten numerouspapersaboutimprovingmedicalcarefortheelderly. Thissmallstaff wouldbejoinedbypeoplewithdiverseexperienceingovernmentpolicy,law, publicrelations,andbusinessastimewenton. Thestaffinitiallyexpectedthestudyandreportwouldbeaccomplishedin sixmonths.Magazinerenvisagedtwomorephases: "PhaseII,Julythrough December1990: Raisefundstoimplementthemodels;lobbyfornecessary legislativeandadministrativechanges;buildaconsensustotrythecommittee's proposalsandorganizeacoalitiontoimplementtheprogram. PhaseIII,January throughJune1991:Beginimplementation" (memotoOrganizingCommittee, 1/3/90). Magazinerfundedthefirstphasebyforminganewcompany,SJS,that providedspaceandsupportfortheproject. Theprogram,soontobenamed "Aging2000,"wouldbecarriedoutundertheauspicesoftheInterfaithHealth CareMinistries,inordertoprovideanecumenical,non-profitandnon-political foundationforitsoperations. MagazinermadedonationstoInterfaithHealthCare Ministriestofundtheproject. Asthiseffortstarted,MagazinernotedinhismemototheOrganizing Committee that: "ThoughIwillprovidefunds,Iexpectthattheadhoccommitteeandthe BoardoftheInterfaithHealthCareMinistrieswillhaveultimateauthority overthestudy,itscontentanditsdissemination. Iseemyroleasbeinga catalystandwillinfluencetheprocessandreportonlyinsofarasIcan persuadethecommitteeandtheBoardofDirectorsofmyideas,justas anyothercommitteeparticipant"(memotoOrganizingCommittee,1/3/90). Magazinerfurtherplannedtokeepthecommitteeopentopeoplewho wereinterestedinjoiningtheeffort. Luncheonmeetingswereheldeverymonth orsoforthestafftopresentresearchfindingstothegrowingcommittee,whichby thecompletionofthereportin1991,numbered160peoplethroughoutRhode Island. AmemofromCaronintheearlydaysstatedthemesthatwouldbecome moreprominentastimewenton: "Theprojectshoulddefineanapproachtohealthcarethroughtheeyesof theusers,notpractitionersoradministrators;theprojectneedstoproduce atruedelivery'system*designthatmakesbetteruseofexistinghealth careexpenditurestomeettheseusers'needs,theprojectshouldbe sufficientlyinnovative,flexibleandboldtowarrantattentionasapossible nationalmodel,[and]theprojectneedstobeundertakenandcompletedin 1990,giventheunprecedentedworryoverourhealthcaresystemallthe waytotheWhiteHouse,thedearthofnewideasandtheuniquesizeand demographicsofRhodeIslandasthemostattractivelaboratorytopilota newmodel"(memotoHealthCareResearchStudy,2/2/90). TheCommitteeagreedonseveralcrucialpoints. Theexistinghealthcare systemhadsevereproblems,andauniqueopportunityexistedatthetimefor RhodeIslandtobecomeamodelstatebyproposingsomethingfundamentally different. Ratherthandosomethingpiecemeal,theCommitteealsowas committedtooverhaulingwhatcurrentlyexistedonabroadscale,and redesigningitsoitworkedbetter. Finally,theusersofthesystem,theelderly,in ordertobesatisfiedbywhatresulted,neededtobevitallyinvolvedinthe process:theresearch,thedesign,aswellastheimplementationofthenew model. TheCommitteewasstronglycommittedtobringingaboutchangethrough agrassrootsmovement. Reformwouldbepushedbyconsumersandproviders fromthebottom-upandnotimposedbystategovernmentfromthetop-down. Combiningsystemicchangeandgrassrootsinvolvementwasatotallydifferent wayofapproachinghealthcarereformandhadneverbeforebeenattemptedata locallevel. RhodeIslandprovidedaconvenientlaboratoryinwhichtolauncha project. Smallandcompactwithcentralizedstateofficesandrecordslocatedin Providence,RhodeIslandismanageabletostudy,thoughhistoricallyharderto reform. In1989,RhodeIslandwastiedfor2ndplaceintheproportionofelderly overage65inthenationandwasthen,andeightyearslater,isstillthefirstin thepercentageofthoseovertheageof85. Thestudyprocesswoulddescribethehealthcaresystemfortheelderlyas itcurrentlyexistedinthestate,enumeratewhatitcost,anddescribehowusers andrecipientsoftheservicesbelieveditdidordidnotwork.Thisrequired understandingwhatthelocalandnationalserviceswere,whoreceivedthe servicesandwhy,howtheydidordidnotmeettheperceivedneeds,what amountswerespent,wherethemoniesoriginated,andhowtheywereused. A corepartofthestudywouldbebasedonopen-endedinterviewswithpeoplewho participatedinthesystem. Theseinterviewswoulddescribehowthesystem functioned(ordidn't)frompersonal,first-handexperience. Noblueprintfor solutionswaspostulatedatthebeginning. Inthelate1980'sitappearedthatthetimewasrightforsuchaninitiative. Rapidlyrisinghealthcarecostswerestrainingstateandfederalbudgets, reducingtheabilityofAmericancompaniestocompetesuccessfully andleading tolaborunrestasworkersfoughtmanagementtostaveoffcutsinhealthcare fringebenefits. Itwasbecomingmorewidelyunderstoodthatthenation'shealth caredeliverysystemwasincrisisandinneedofanoverhaul. Magazinerand Baldwinchosetheover-65populationasthetargetgroupforthereforminitiative theyhopedwouldflowfromtheresearchbecauseuniversalcoveragealready existedthroughtheMedicareprogramandbecausetheelderlywerethelargest consumersofhealthcareinRhodeIsland. Theyaccountedforover38percent ofthehealthcareexpendituresandover59percentofallpublichealthcare dollarsspentinthestate(Aging2000,1991). ItalreadywasclearthatwhiletheAmericanhealthcaresystemandthe wayitisfinancedmayhavebeensuitedtothemanagementofacuteillness,the currentmedicalmodeldidnotservetheneedsoftheolderperson. Becausethey arelikelytohavemultipleandcomplexchronicconditionsthatimpedetheir function,aswellasreducetheircapacitytomanagestress,theelderlyoftenare morevulnerabletotheaggressiveatmosphereandimpersonalroutinesofthe hospitalsettingthanareyoungerpersons. Asthehealthcaresystembecame morefragmented,lesspersonal,andmoretechnologically-driven,thehigh- quality,patient-centeredcaregivingthatolderpersonsparticularlyseemtoneed orwantwasrarelyavailable. Lower-cost,low-tech,supportiveservicesthat enhancefunctioningandhelppreventordelayinstitutionalizationofolderpeople inthecommunity,weregenerallynotreimbursedbyMedicare. Therefore,the healthcaresystemlaboredwiththeironythatitproducedmanyoftheacute hospitalepisodesthatoftenreduceanolderperson'soverallfunctionalabilityand didsoveryexpensively. 6 ThefirstproductenvisagedbytheMagaziner,Baldwinandtheresearch teamwasareport, jargon-freeandunderstandablebyall,tobemadeupofsix parts: • thedefinitionofthenationalproblem; • theRhodeIslandexampleindetail; • thehistoricaloverviewofhowtheproblemevolvedsociallyandlegislatively; • examplesofwhatworkswellinthenationandinternationally(drawnfrom visitstobestpracticesites); • aconceptualoverviewforreforminRhodeIsland;and • specificideasofhowtoimplementreforminRhodeIslandvialegislation, federalorstatewaivers,andthelike. Followingthecompletionofthereport,Magazinerimaginedcreatinga videocompanionpiece. Theteamwouldpublicizethereportwithop-edpieces,a shortsummaryofthereport,andthevideo,andhopedthesewouldgenerate financialandgrassrootssupporttoimplementthespecificproposalsinthereport. RhodeIslandcouldbeamodelstateforthenation. Magazinerhadahistoryofreformchallengesbehindhim,some successful,somenot,andhefelthehadlearnedfromhismistakes. Inadditionto hisworkatBrown,whichthoughcontroversial,hadmadeBrownthe"hot"school itsincebecame,Magazinerhadledalesssuccessfulrevitalizationeffortinthe cityofBrockton,Massachusetts. HealsowaswellknowninRhodeIslandfor proposingaboldeconomicplanforthestatewhichidentifiedtheindustriesthat RhodeIslandcouldexploittobecomefinanciallysuccessfulinthefuture(the 7