building the framework for idd quality measures · rubin, mpp, principal, health management associa...
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Building The Framework For IDD Quality Measures
©Command Care 524910948
SPONSORED BY:
ATTENDEES:
JoeCaldwell, PhD, Visi)ng Scholar, Lurie Ins)tute for Disability Policy, Brandeis Kathy Carmody, MA, CEO, Ins)tute on Public Policy for People with Disabili)es Lindsey Crouse Mitrook, MBA, Director of Value-Based Care, AmeriHealth Caritas* StacyDiStefano, MS, COO, OPEN MINDS Katherine Dunbar, BA, Vice Presidentof Accredita)on, CQL | The Council on Quality and Leadership Carli Friedman, PhD, Director of Research, CQL | The Council on Quality and Leadership Charlo>eHaberaecker, BS, CEO, Lutheran Services in America(LS A) Angela King, MSSW, Presidentand CEO, Volunteers of AmericaT exas Erica Lindquist, MA, Senior Director of Business Accumen, Na)onal Associa)on of States United for Aging and Disabili)es (NASUAD) Mark McHugh, MSW, MEd, Presidentand CEO, Envision Unlimited Barbara Merrill, JD, CEO, American Network of Community Op)ons and Resources (ANCOR) JayNagy , BS, CEO, Advance Care Alliance Patricia Nobbie, PhD, Disability Policy EngagementDir ector, Anthem Stephanie Rasmussen, BA, Vice Presidentof Long-Term Care, Sunflower Health Plan Mary Kay Rizzolo, PhD, Presidentand CEO, CQL | The Council on Quality and Leadership Joshua Rubin, MPP, Principal, Health ManagementAssocia tes Tracy Sanders, MEd, Senior Director, Behavioral Health Medicaid Services, Optum Michael Seereiter, BA, Execu)ve Vice President and COO, New York Alliance for Inclusion and Innova)on ChrisSparks, MSW, Presidentand CEO, Excep)onal Persons Inc in Iowa* LindaTimmons, MA, Presidentand CEO, Mosaic Laura Vegas, MPS, Project Director for MCO Business Acumen, Na)onal Associa)on of State Directorsof Developmental Disabili)es Services (NASDDDS)* Marlin Wilkerson, BS, Senior VP of Opera)ons, Mosaic *Consor'um member but could not a2end in person mee'ng.
AUTHORED BY: Carli Friedman, PhD
CQL | The Council on Quality and Leadership 100 West Road Suite 300, Towson, MD 21204
RECOMMENDED CITATION: Friedman, C. (2018). Building The Framework For IDD Quality Measures. Towson, Chicago, and Omaha: The Council on Quality and Leadership, the Ins)tute for Public Policy for People with Disabili)es, and Mosaic.
TABLE OF CONTENTS
Executive Summary ....................................................................................3
Introduction .................................................................................................4
Background .................................................................................................5
The Broad Push for Value-Based Thinking .............................................8
Looking Across the Industry: What Are States Thinking ......................9
Social Determinants of Health ...............................................................11
Building the Framework for Value Based Measures ..........................21
Moving Forward .......................................................................................29
References .................................................................................................30
Appendix ...................................................................................................34
EXECUTIVE SUMMARYMedicaidmanagedcareisarapidlygrowingservicedeliverymodelintheUnitedStates.TheaimofMedicaidmanagedcareistoreduceprogramcostsandprovidebeaeru)liza)onofhealthservicesthroughthecontrac)ngofmanagedcareorganiza)ons(MCOs).WhileMedicaidmanagedcarehasexistedforalmosttwodecades,ithasyettobefrequentlyusedforlong-termservicesandsupports(LTSS) for peoplewith intellectual anddevelopmental disabili)es (IDD). As u)liza)onofmanagedcare for peoplewith IDD is low, there is liale research aboutwhat standards should be used fortradi)onalaswellasalterna)vepaymentmodelssuchasvalue-basedreimbursementmodels.Forthesereasons,andbecausethere isbeginningtobeanexpansionofMedicaidmanagedcare intothe IDD LTSS system, evidenced-based quality standards and guidelines about managed careprovisionforpeoplewithIDDaremorecri)calthanever.
InOctober2018,CQL|TheCouncilonQualityandLeadership(CQL),TheIns)tuteonPublicPolicyfor People with Disabili)es, and Mosaic organized a symposium with approximately 25 thoughtleaders in the healthcare and LTSS industry – the stakeholders represented service providers,industry associa)ons, managed care organiza)ons, and other key leaders. The symposium wasdesignedtodevelopacommonunderstandingofvalue-basedqualitymeasuresforpeoplewithIDDtoensurethatastheindustrymovestomanagedcare,thequalitymetricsu)lizedaremeaningfulforpeoplewithIDD.
Thisreportisaresultofthissymposium;whatfollowsisasummaryofthosefindings–aroadmapfor the keymeasureswhichwould support peoplewith IDD to receive high quality services andsupports. While we recognize much more work is necessary for evidenced-based standards andguidelinesaboutmanagedcareprovisionforpeoplewithIDD,thisreportservesasoneofmanyfirststepstowardsqualityvalue-basedserviceprovisionforpeoplewithIDD.
Findingsfromourdataanalysisof28serviceagencieswhosupportapproximately3,000peoplewithIDDrevealedthatwhiletradi)onalmeasuresofhealthareimportant,manyotherfactorsplayaroleinqualityservicesandsupports,andqualityoflife.Asindicatedinthefindings,respect,meaningfuldays,stafftraining,andmanymoresocialdeterminantshaveanimpactonhospitaliza)ons,injuries,medica)onerrors,andbehavioralissues.
Findingsfromourfocusgroupswiththoughtleadersalsoindicatedthatalthoughhealthandsafetyarefounda)onalbuildingblocks,theyarenotenough—itisimportanttoensurepeoplewithIDDhave meaningful lives. Informed choice, person-centered prac)ces, goals, community living,meaningful days, rela)onships, dignity and respect, con)nuity and security, and access totechnologywerealldescribedaskeycomponentsofquality.Buildingqualityframeworksdemandsthecrea)onofqualitystandardsbasedonevidenced-basedbestprac)ces.Therealsoneedstobearecogni)on that quality is an investment. Finally, quality frameworks require a cultural change toperson-centeredservices,notonlyinsystemsbutinprac)ce.
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INTRODUCTIONFor many providers and funders in human services, the lack of measurement and evalua)vemethods is topofmind.Also, as the transi)on tomoremanaged care long-term servicesoccurs,expertsareiden)fyingthisgapasatoppriority.Thisisacomplexissueandassuch,insightfromadiversesetofstakeholdersfromarangeofperspec)vesiscri)cal.
InOctober2018,CQL|TheCouncilonQualityandLeadership(CQL),TheIns)tuteonPublicPolicyfor People with Disabili)es, and Mosaic organized a symposium with approximately 25 thoughtleaders in the healthcare and LTSS industries – the stakeholders represented service providers,industry associa)ons, managed care organiza)ons, and other key leaders. The symposium wasdesignedtodevelopacommonunderstandingofvalue-basedqualitymeasuresforpeoplewithIDDtoensurethatastheindustrymovestomanagedcare,thequalitymetricsu)lizedaremeaningfulforpeoplewithIDD.
Thisreportisaresultofthissymposium;whatfollowsisasummaryofthosefindings–aroadmapfor the keymeasureswhichwould support peoplewith IDD to receive high quality services andsupports. While we recognize much more work is necessary for evidenced-based standards andguidelinesaboutmanagedcareprovisionforpeoplewithIDD,thisreportservesasoneofmanyfirststepstowardsqualityvalue-basedserviceprovisionforpeoplewithIDD.
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BACKGROUND
People with IDD have significantly poorer health and shorter life expectancies than the generalpopula)on (O’Leary, Cooper, & Hughes-McCormack, 2017; Ouelleae-Kuntz, 2005). This includesincreasedprevalenceofcardiovasculardisease,obesity,hypertension,osteoporosis,andpoororalhealth compared to nondisabled people (Haveman et al., 2010). People with IDD also tend toexperience age related health condi)ons earlier and more rapidly than nondisabled people(Evenhuis, Hermans, Hilgenkamp, Bas)aanse, & Echteld, 2012; Glasson, Dye, & Biales, 2014;Nochajski,2000;WorldHealthOrganiza)on,2001).Theirhigherratesofchronichealthcondi)onsare due to gene)cs, social circumstances, environmental condi)ons, and access to health careservices (Biales et al., 2002; Krahn, Hammond,& Turner, 2006; Ouelleae-Kuntz, 2005; Taggart&Cousins,2014).Moreover,peoplewith IDD’shealthdispari)esareopenexacerbatedbyotherkeysocialdeterminantsofhealth,suchaspovertyandsocialexclusion(Ouelleae-Kuntz,2005).
Researchdetails,however,thatcommitmentfromstakeholders,especiallyserviceorganiza)onsandtheir staff, can serve as a significant facilitator (or barrier) to the success of health ini)a)ves forpeoplewithIDD.Infact,researchhasfoundorganiza)onalsupportscanplayakeyroleinpromo)ngthe health of people with IDD (Friedman, Rizzolo, & Spassiani, 2017a). People with IDD areapproximately 13 )mes more likely to have best possible health outcomes present whenorganiza)onal supports are in place (Friedman et al., 2017a). Moreover, when organiza)onalsupportsareinplace,peoplewithIDDarenotonlymorelikelytohaveanac)veroleintheirhealth,buttheirhealthinterven)onsarealsomorelikelytobeeffec)ve(Friedmanetal.,2017a).
ThequalityofsupportspeoplewithIDDreceive,andbyextensiontheirhealthandqualityoflife,isalso largely influencedby thegovernment services they receive. Long-termservicesand supports(LTSS)arecommunityorfacilitybasedservicesforpeoplewhoneedsupporttocareforthemselvesbecauseofdisability,age,orfunc)onal limita)ons.Themajorityofgovernmentspending(federal,state,andlocal)forpeoplewithIDDisthroughMedicaid(e.g.,$49.4billioninfiscalyear(FY)2015)(Braddock,Hemp,Tanis,Wu,&Haffer,2017).DuringtheGreatRecession(2007-2009)morepeoplewererelyingonMedicaidbecauseofunemployment,resul)nginadropinthepropor)onoftotalfederal Medicaid spending going towards people with IDD (Braddock et al., 2015). In wake of
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recovery from the Great Recession,states’ alloca)on toward communitysupports and ins)tu)onal careincreased (Braddock et al., 2015;Friedman, 2017). However, therecon)nues to be large wai)ng lists forservices, as well as an unstable directsupport professional (DSP) workforce(Bogenschutz , Hewia, Nord, &Hepperlen, 2014; Hasan, 2013; Hewia& Larson, 2007; Hewia et al., 2008;Larsonetal.,2016;Micke,2015;Taylor,2008). In 2013, approximately 233,000peoplewithIDDacrossthena)onwerewai)ngforMedicaidLTSS(Larsonetal.,2016).
As states are grapplingwith a reducedfiscal landscape, Medicaid managedcare is a rapidlygrowing servicedeliverymodelhasbecome theUnitedStates (Williamsonetal.,2017).TheCentersforMedicareandMedicaidServices(CMS)explain,Medicaid“managedcareisahealth caredelivery systemorganized tomanage cost, u)liza)on, andquality.Medicaidmanagedcare provides for the delivery of Medicaid health benefits and addi)onal services throughcontractedarrangementsbetweenstateMedicaidagenciesandmanagedcareorganiza)ons(MCOs)that accept a set per member per month (capita)on) payment for these services” (Centers forMedicareandMedicaid,n.d.).TheaimofMedicaidmanagedcare is toreduceprogramcostsandprovidebeaeru)liza)onofhealthservicesthroughthecontrac)ngofMCOs.
AsofJuly2014,55millionpeopleintheUnitedStateswereenrolledinmanagedcare(CentersforMedicareandMedicaid,n.d.).Yet,thereisconflic)ngresearchaboutthebenefitsofmanagedcarefor peoplewith disabili)es in the United States, par)cularly regarding the cost effec)veness andquality(Bindman,Chaaopadhyay,Osmond,Huen,&Baccheu,2004;Burns,2009a,2009b;Caswell&Long,2015;Coughlin,Long,&Graves,2008;Duggan&Hayford,2013;Premo,Kailes,Schwier,&Richards,2003;Wegmanetal.,2015;Williamson,Fitzgerald,Acosta,&Massey,2013;Williamson,2015;Williamsonetal.,2017).
Moreover,whileMedicaidmanagedcarehasexistedforalmosttwodecades, ithasalsoyettobefrequently used for LTSS for people with IDD (Burns, 2009a). As u)liza)on of managed care forpeople with IDD is low, there is liale research about what quality standards should be used forvalue-basedpaymentsfortheLTSSofpeoplewithIDD.ThefactthatsuchMedicaidmanagedcareforpeoplewithIDDisunderstudiedand,asaresult,maybeimplementedwithoutanappropriateevidence-base, is par)cularly concerning given “the health and quality of life of persons withdisabili)esispar)cularlysensi)vetotheaccessibilityoftheirhealthcare”(Burns,2009a,p.1521).
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For example, one study found people who receive support from MCOs are less likely to haveopportuni)estoself-managetheirhealth,whichinturnresultsinlesseffec)vehealthinterven)ons(Friedman,Rizzolo,&Spassiani,2017b).
PeoplewithIDDareauniquepopula)onthat,inmanyinstances,requireadifferentsetofservicesandsupportsthannondisabledpeopleorevenpeoplewithothertypesofdisabili)es.Forexample,Medicaid LTSS for people with IDD frequently includes unique services such as residen)alhabilita)on, personal care, supported employment, and transporta)on (Braddock et al., 2015;Friedman, 2017; Friedman& Rizzolo, 2016, 2017; Rizzolo, Friedman, Lulinski-Norris, & Braddock,2013). As such, “scholars cau)on against generalizing from such research to a popula)onwith asubstan)ally different health profile” (Burns, 2009a, p. 1521; Currie & Fahr, 2005; Rowland,Rosenbaum, Simon, & Chait, 1995; Sisk et al., 1996). For these reasons, and because there isbeginningtobeanexpansionofMedicaidmanagedcareintotheIDDLTSSsystem,evidenced-basedstandardsandguidelinesaboutmanagedcareprovisionforpeoplewithIDDaremorecri)calthanever.
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THE BROAD PUSH FOR VALUE-BASED THINKING
Summary of a presentation by Andy Edeburn, Premier
Value-basedservicesareanefforttoshipawayfromtradi)onalfee-for-serviceservices,whicharebasedon thenumberof servicesprovided, toservices thatpromotequality.Value-based thinkingrecognizesthatemphasisonqualityul)matelyresultsinreducedhealthcarecosts.
Theaimofhealthcaretoday includesnotonlysmarterspending (i.e., lowerhealthcarecosts),butalso beaer care – improved quality and sa)sfac)on – and healthier people – improved healthoutcomesofpopula)ons(Ins)tuteforHealthcareImprovement,n.d.).Assuch,value-basedthinkingrepresentsaculturalshiptowardsperson-centeredthinking.
Current
FFS
System
Whataretheunderpinningbuildingblocks?
Core Components
Peoplecenteredfoundation
Health(medical)home
Highvaluenetwork
Populationhealthinformatics&technology
Governanceandleadership
Payorpartnerships
Value-BasedPaymentmodels
Measurement
FoundaTonalPhilosophy:TripleAimMetrics/ImproveValue
Source:Premier.
Whilethemajorityofthecurrentservicesystems)llfunc)onsunderafee-for-servicemodel,thereis bipar)san support to move away from fee-for-service, towards value. With these changes toMedicare andMedicaid, providers, not payers,will be increasingly held accountable for cost andoutcomes.Moreover,commercialpayersandmanagedcareorganiza)onsareincen)vizedtofollowMedicare’s payment and quality models. As a result of these changes, there is an increasedalignmentbetweenhealthsystems,communityresources,and“non-tradi)onal”partners.
Value-basedthinkingincen)vizesquality;leadsopportuni)estodefinewhat“quality”isandwhatitshould mean. Yet, in the current system themajority of “health outcomes” are from tradi)onalmetrics,suchashospitaliza)onratesorobesityrates.Successfulqualitymetricsnecessitateashiptoward inclusionof socialdeterminantsaswell.Asa result,data insights,analy)cs,exchangeandinnova)on,arekeystofuturesuccessandrelevance.
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LOOKING ACROSS THE INDUSTRY: WHAT STATES ARE THINKING
Summary of a presentation by Stacy DiStefano, OPEN MINDS
Approximately1.5%of theUnitedStatespopula)onhas IDDandpublic spendingonpeoplewithIDDhas increased (15%between 2006 and 2017 (Braddock et al., 2017)).More peoplewith IDDthan ever before are living in the community compared to ins)tu)onal seungs (Braddock et al.,2017),however,thereisashortageofhomeandcommunity-basedop)onsduetolongwai)nglists,budgetaryissues,alackofhousing,workforceissues,andcaregiverstress.
ThemarketforIDDservicesisalsocurrentlybeingshapedbyanumberoffactors:• “Pending‘blockgrant’and'statediscre)on’modelsforuseoffederalfunding;• Increaseincommunity-basedcareandchangingCMSrulesforhomeandcommunity-based
waivers;• Morelong-termcareservicesmovingtomanagedcareandcompe))vepurchasingmodels—
includingIDDservices;• Statesstrugglingtoaddresshighservicecostsagainstbudgetconstraints–leadingtowaiver
wai)nglists;• Newassis)vetechnologiesandremotemonitoringforsuppor)ngpeopleinthecommunity;
and,• New organiza)ons entering the market – both private equity-backed start-ups and
extensionsofmul)-statenon-profits.”
As a result of all of these factors, reimbursement models are changing, with many providerorganiza)onscurrentlyreceivingvalue-basedrevenue.
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Figure1.StatesthatincludeIDDinMedicaidManagedLongTermServicesandSupports*(2017)
*StatesvaryinMTLSSmodelsandservicesincludedundermanagedcare.
Source:OPENMINDS.
Some portion of IDD population in MTLSS
Any population in MTLSS
Currently,10statesincludeatleastsomepor)onoftheIDDpopula)onintheirMedicaidmanagedlongtermservicesandsupports(MLTSS)(seeFigure1).
OPEN MINDS believes value-based reimbursement is here to stay because “of poli)cal andcompe))vepressureonpayers, federalgovernment,andemployers,downwardpricepressureonhealthplans,thesuccessof‘some’AccountableCareOrganiza)ons(ACOs),theearlyfindingsoftheMedicarebundledrateini)a)ve,andpressureonhealthplanmedicallossra)os.”
Managed care is likely to result in a number of changes, including “managing the Home andCommunity-Based Services (HCBS) program, ‘service plans’ created in conjunc)on with themanagingen)ty,carecoordina)onandserviceplanning‘integra)on’(e.g.,LTSS,medical,pharmacy,behavioral,socialservices),andvalue-basedreimbursementmodels,whichfavor‘integra)on’acrossspecial)esandlevelsofcare.”
Movingfromfee-for-servicetomanagedvalue-basedreimbursement,canresult inagreaterfocusonoutcomes,agreaterdata-drivenculture,andamoreeffec)veimplementa)onoftechnology.
Futuresustainabilityofvalue-basedreimbursementrequires“understandingwhatconsumerswant,what payers (and their health plans)will pay for,”what ‘value’ is, “how system restructuringwillchangecompe))veadvantage,andhowtechnologywillchangethe‘valueproposi)on’.”
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SOCIAL DETERMINANTS OF HEALTHSocialdeterminantsofhealtharecondi)ons,environments,and seungs that impact not only health but also overallqualityoflife."Byworkingtoestablishpoliciesthatposi)velyinfluence social and economic condi)ons and those thatsupport changes in individual behavior, we can improvehealth for large numbers of people in ways that can besustained over )me. Improving the condi)ons inwhichwelive,learn,work,andplayandthequalityofourrela)onshipswil l create a healthier popula)on, society, andworkforce” (United StatesOffice of Disease Preven)on andHealth Promo)on, n.d.). Social determinants of health arecri)calforhealthequity.
Social Determinants of Health Index At CQL, we recently developed a new way of measuringsocial determinants of health. In order to create themeasurementtoolwecross-walkedtheHealthyPeople2020Social Determinants of Health framework (United StatesOffice of Disease Preven)on and Health Promo)on, n.d.)withthePersonalOutcomeMeasures®.
The Personal Outcome Measures® was developed tocomprehensively measure quality of life of people withdisabili)es while also paying aaen)on to the key roleorganiza)onal support can play in improving individualoutcomes. Unlike other quality of life measures that arebased on organiza)onal standards, the Personal OutcomeMeasures® focuses on a person-centered defini)on ofquality of life, including choice, self-advocacy, self-determina)on, and community inclusion. The PersonalOutcome Measures® has been con)nually refined throughini)alpilottes)ng,25yearsofadministra)on,researchandcontentexperts,aDelphisurvey,andfeedbackfromadvisorygroups. The current version of the Personal OutcomeMeasures® includes 21 indicators divided into five factors:my human security; my community; my rela)onships; mychoice;and,mygoals.
For the Social Determinants of Health Index, we selected
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PersonalOutcomeMeasures®indicatorsthatconceptuallyfitintothefollowingfiveHealthyPeople2020SocialDeterminantsofHealthcategories:
• Economicstability;• Educa)on;• Socialandcommunitycontext;• Healthandhealthcare;and,• Neighborhoodandbuiltenvironment(UnitedStatesOfficeofDiseasePreven)onandHealth
Promo)on,n.d.)We then ran an exploratory factor analysis (EFA) with promax rota)on of Personal OutcomeMeasures® interviews with approximately 1,078 people with disabili)es (conducted by cer)fiedreliableinterviewers)from2017(Friedman,2018).ThefindingsoftheEFArevealedtheCQLSocialDeterminantsofHealthIndexiscomprisedofthreefactors(seebelow).
THE CQL SOCIAL DETERMINANTS OF HEALTH INDEX FACTORS
FACTOR 1CHOICE AND ENGAGEMENT
• Peopleinteractwithothermembersofthecommunity
• Peoplepar)cipateinthelifeofthecommunity
• Peopleperformdifferentsocialroles
• Peoplechoosewheretowork
• Peoplechoosewhereandwithwhomtolive
FACTOR 2PERSON-CENTEREDNESS
• Peopleexerciserights• Peoplearetreatedfairly• Peoplearerespected• Peopleexperience
con)nuityandsecurity
FACTOR 3HEALTH AND SAFETY
• Peoplehavethebestpossiblehealth
• Peoplearesafe
Table1presentsthemeansforeachofthethreefactors.Theaveragepersonhad50%ofthesocialdeterminantspresentintheirlife.Asindicatedbytheindex,peoplewithIDDfrequentlyscorehigheronhealthandsafety,comparedtochoiceandengagement,orperson-centeredness.
Table1.SocialDeterminantsofHealthIndexFactorMeans(n=1,078)
M SD
Factor1:Choiceandengagement 0.40 0.33
Factor2:Person-centeredness 0.50 0.38
Factor3:Healthandsafety 0.69 0.35
TOTAL 0.50 0.28
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The Impact of Social Determinants of Health on Overall Quality of Life We ran a linear regression model to explore the rela)onship between the social determinants of health and overall total personal quality of life outcomes and there was a significant rela)onship (F (1,1042) = 1781.43, p < .001, R2 = .79), indica)ng the higher people scored on the social determinantsofhealthindex, themorequalityoflifeoutcomestheyhadpresent.
Figure2.Rela)onshipbetweenSocialDeterminantsofHealth&PersonalOutcomes
TotalO
utcomesPresent
0%
23%
45%
68%
90% 87%80%
73%67%
60%53%
46%40%
33%26%
19%13%
0 9% 18% 27% 36% 46% 55% 64% 73% 82% 91% 100%
SocialDeterminantsofHealthIndex
For example, a person that scores 50% on the Social Determinants of Health Index is expected to have half, or 50%, of their quality of life outcomes present. Whereas a person who scores 100% on the Social Determinants of Health Index is expected to have almost 90% of outcomes present – a significantlyhigherqualityoflife.
The Impact of Organizational Supports on Social Determinants of Health As we found that social determinants of health are important to quality of life, we next explored how social determinants can be facilitated. To do so, we looked at the rela)onship between organiza)onal supports and social determinants of health using a linear regression model. These include supports to facilitate personal outcomes around health, safety, choices, and many more. Findings revealed the more organiza)onal supports people receive, the significantly higher their socialdeterminantsofhealth(F (1, 1029)=2344.29, p <.001, R2=0.83).
Figure3.ImpactofOrganiza)onalSupportonSocialDeterminantsofHealth
SocialDeterminantsof
Health
0%
23%
45%
68%
90% 84%76%
69%61%
53%46%
38%30%
23%15%
7%
0 2 4 6 8 10 12 14 16 18
Organiza)onalSupportsinPlace(outof21)
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20
Forexample,apersonwhohas8outofthe21organiza)onalsupportsinplaceisexpectedtoscore38%ontheSocialDeterminantsofHealthIndex,whereasapersonwhoreceives16outofthe21organiza)onalsupportsisexpectedtoscore69%ontheSocialDeterminantsofHealthIndex.
Value Metrics WhiletheSocialDeterminantsofHealthIndexexaminessocialdeterminantsattheindividuallevel,asorganiza)onsplayakeyroleinfacilita)ngsocialdeterminantsandqualityoflife,itisimportanttoalsoexaminemetricsattheorganiza)onal level.Todoso,weanalyzeddatafrom28organiza)onsusingtheBasicAssurances®toolandtheirimpactonotherhealthmetrics.
TheBasicAssurances®toolisanorganiza)onalassessmentthatensuresaccountabili)esforhealth,safety, and human security within service provider organiza)ons. The applica)on of the BasicAssurances® involves two broad evalua)on strategies – evalua)on of both the system and theorganiza)onalprac)ce.Policiesandothersystemsare importantforsustainabilityandconsistencyover)me,buttheactualprac)ceofthepolicyattheorganiza)onleveliscri)caltoqualityservices.The Basic Assurances® contains 10 Factors, 46 Indicators, and over 300 quality probes (or sub-indicators).
This analysis is the result of a partnershipwithMosaic, a faith-based organiza)onwith agenciesacrosstheUnitedStates.MosaicprovidedCQLwithde-iden)fieddataabouttheBasicAssurances®,healthmetrics, and incident reports fromFY2016 to2018,andCQL independently conductedallanalyses.Thispilot is comprisedofdata from28serviceagencieswhosupporteda totalof2,955peoplewithIDD.
Thefollowingvariableswereusedasdependentvariables(DVs)fortheanalyses:• Hospitaliza'ons data: every visit to the hospital, regardless of whether people were
admiaedornot.• Appointments:anytypeofmedicalappointment,rangingfromfamilymedicinetospecialists;
thisincludedpsychiatricappointmentsaswell.• Medica'onerrors:documenta)onofevery)metherewasamedica)onerror,regardlessof
thereason.• Injuries documented: any type of injury event (e.g., redness, bruising, bleeding, lesions,
unknownorigin,etc.).• Behavioralissues:allbehavioraleventsorissues.
For all analyses, we controlled for agency size (the number of people the agency supported);becauseofcollinearity,agencysizewasbuiltintotheDVs,resul)ngintheDVsallbecoming‘rates’–thenumberofeventspereveryonepersontheagencysupported.Forexample,thehospitaliza)onratewasthenumberofhospitalvisitsforeveryonepersontheagencysupported.
ToexaminedifferencesintheDVsdependingoneachindividualBasicAssurances®indicator,Mann-WhitneyUwasu)lized.One-sidedpvalues(exact)wereu)lized.Eachmodelhadabuilt-incontrolfor organiza)on size to minimize issues of collinearity. Below we present a snapshot of thesignificantfindings.Sta)s)csarepresentedintheAppendix.
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Hospitalization Rates Findings revealed, organiza)ons that had systems in place around respec)ng people’s concerns and responding accordingly, had significantly lower hospitaliza)on rates (see Figure 4). When they did so, they had a hospitaliza)on rate of 1.03 for every one person they served (over a three year period) versus 2.57 for when they did not have organiza)onal systems in place promo)ng respect of people’s concerns. For example, in an organiza)on that supports 500 people, hospitaliza)ons would be expected to drop from 1,285 (for a three year period) to 515 when organiza)ons respect people’s concerns.
Figure4.TheOrganiza)onRespectsPeople’s ConcernsandRespondsAccordingly
(Systems)
Hospita
liza)
onra
te(FY16
-18)
0.0
0.7
1.3
2.0
2.6
1.03
2.57
Figure5.SupportsandServicesEnhance DignityandRespect(Systems)
Hospita
liza)
onra
te(FY16
-18)
0.0
0.7
1.3
2.0
2.6
1.10
2.57
NotPresent Present NotPresent Present
Respect was actually a common theme across these analyses. Figure 5 presents another example. When systems were in place to enhance services and supports that promote dignity and respect, agencies also had significantly lower hospitaliza)on rates. When organiza)ons put systems in place to ensure people had meaningful work and ac)vity choices – they had a "meaningful day” – hospitaliza)on rates were significantly lower, at 0.65 per person supported over a three year period versus 1.74 per person supported (Figure 6).
Natural supports also resulted in lower hospitaliza)on rates (Figure 7). When organiza)ons facilitated each person’s desires for natural supports, there were lower hospitaliza)on rates. When organiza)ons had systems in place addressing individualized emergency plans, the hospitaliza)on rate was 1.03 over a three year period, compared to 2.35 for when they did not have a system of individualizedemergencyplaninplace(Figure8).
Figure7.TheOrganiza)onFacilitatesEach Figure6.PeopleHaveMeaningfulWorkAnd Person’sDesireForNaturalSupports
Ac)vityChoices(Systems)
Hospita
liza)
onra
te(FY16
-18)
0.0
0.5
0.9
1.4
1.8
0.65
1.74(Systems)
Hospita
liza)
onra
te(FY16
-18)
0.0
0.8
1.5
2.3
3.0
1.15
2.85
NotPresent Present NotPresent Present
15
Appo
intm
entrate(FY16
-18)
When organiza)ons treated people with psychoac)ve medica)ons for mental health needs consistentwith na)onalstandardsofcare,hospit aliza)onrateswerelower(Figure9).
Figure9.TheOrganiza)onTreatsPeople WithPsychoac)veMedica)onsForMental
Figure8.TheOrganiza)onHas HealthNeedsConsistentWithNa)onal IndividualizedEmergencyPlans(Systems)
Hospita
liza)
onra
te(FY16
-18)
0.0
0.6
1.2
1.8
2.4
1.03
2.35StandardsOfCare.(Prac)ce)
Hospita
liza)
onra
te(FY16
-18)
0.0
0.7
1.4
2.1
2.8
1.10
2.77
NotPresent Present NotPresent Present
Appointment Rates
Figure 10.People Are Free From Abuse, Figure11.TheOrganiza)onImplementsAn Neglect, MistreatmentAndExploita)on OngoingStaffDevelopmentProgram
(System) (System)
We also examined differences in appointment rates. When organiza)ons had systems in place to ensure people were free from abuse, neglect, mistreatment, and exploita)on, the medical appointments rate was cut in half (Figure 10). But perhaps a bit less immediately obvious, when organiza)ons had systems in place to implement ongoing staff development, there were also significantlyfewerappointments(Figure11).
6.5
13.0
19.5
26.0
12.16
24.84
Appo
intm
entrate(FY16
-18)
0.0
7.0
14.0
21.0
28.0
12.34
26.08
0.0 NotPresent Present NotPresent Present
Medication Errors Rates Medica)on errors are a significant concern for service organiza)ons. When organiza)ons treated people with psychoac)ve medica)ons for mental health needs consistent with na)onal standards of prac)ce there were fewer medica)on errors (see Figure 12). When agencies treated people consistent with na)onal standards of care, there were 3.13 medica)on errors for every one person they supported over the three year period, versus when they did not there were 14.92 for every one
16
Med
ica)
onerrorsrate
person they supported. Also when people were free from unnecessary intrusive interven)ons, there weresignificantlyfewermedica)onerrors(Figure13).
Figure12.TheOrganiza)onTreats PeopleWithPsychoac)veMedica)ons ForMentalHealthNeedsConsistent Figure 13.People Are Free From WithNa)onalStandardsOfCare Unnecessary, IntrusiveInterven)ons
(Prac)ce) (Prac)ce)
(FY16
-18)
4.0
8.0
12.0
16.0
3.13
14.92
Med
ica)
onerrorsrate
(FY16
-18)
0.0
4.0
8.0
12.0
16.0
2.72
14.92
0.0 NotPresent Present NotPresent Present
Injury Rates Another variable we looked at was injuries. Analyses revealed dignity and respect was yet again a cri)cal component. When organiza)ons had prac)ces in place to respect people’s concerns and respond to them accordingly, the injuries rate of the people they supported was significantly lower (Figure 14). When agencies did not respect people’s concerns, there was a rate of 12.61 injuries for every one person they supported over the 3 year period, whereas when they did respect people’s concerns it dropped significantly to 5.85 injuries per person they supported. Similarly, when supports and services enhanced dignity and respect, the injury rate dropped from 12.77 to 5.98 (Figure15).
Figure14.TheOrganiza)onRespects People’sConcernsandResponds Figure15.SupportsandServicesEnhance
Accordingly(Prac)ce)
Injuryrate(FY16
-18)
0.0
3.3
6.5
9.8
13.0
5.85
12.61DignityandRespect(Prac)ce)
Injuryrate(FY16
-18)
0.0
3.3
6.5
9.8
13.0
5.98
12.77
NotPresent Present NotPresent Present
When systems were in place to ensure people have meaningful work and ac)vity choices, the injury ratedroppedfrom9.38foreveryonepersonoverthethreeyearperiodservedto3.02(Figure16).
When organiza)ons had systems in place to facilitate each person’s desire for natural supports, the injury rate was significantly lower (Figure 17). For example, for an organiza)on that serves 500
17
people, the number of injuries is expected to goes down from 9,600 to 3,100 over a three year periodwhentheorganiza)onfacilitateseachperson’sdesiresfornaturalsupports.
Figure17.TheOrganiza)onFacilitatesEach Figure16.PeopleHaveMeaningfulWork Person’sDesireForNaturalSupports
AndAc)vityChoices(System)
Injuryrate(FY16
-18)
0.0
2.5
5.0
7.5
10.0
3.02
9.38(Systems)
Injuryrate(FY16
-18)
0.0
5.0
10.0
15.0
20.0
6.11
19.14
NotPresent Present NotPresent Present
Behavioral Issues Rates In terms of behavioral issues, when organiza)ons respected people’s concerns and responded accordingly, the behavioral issues rate dropped from 11.07 to 2.70 per person served for a three year period (Figure 18). Similar results were found when people had meaningful work and ac)vity choices – when organiza)ons ensured people had meaningful days – there were significantly fewer behavioralissues(Figure19).
Figure18.TheOrganiza)onRespects People’sConcernsandResponds Figure19.PeopleHaveMeaningfulWork
Accordingly(Prac)ce) andAc)vityChoices(Prac)ce)
Behavioralissuesrate
(FY16
-18)
0.0
3.0
6.0
9.0
12.0
2.70
11.07
Behavioralissuesrate
(FY16
-18)
0.0
1.3
2.5
3.8
5.0
1.22
4.61
NotPresent Present NotPresent Present
Figure20.TheOrganiza)onEnsuresThorough, Appropriate, &PromptResponsesToSubstan)ated
CasesofAbuse, Neglect, Mistreatmentand Exploita)on(Prac)ce)
16.0
Behavioralissuesrate
(FY16
-18)
12.0
8.0
4.0
0.0
2.70
14.86
NotPresent Present
18
When organiza)ons ensured thorough, appropriate, and prompt responses to substan)ated cases of abuse, neglect, mistreatment and exploita)on, and to other associated issues iden)fied in the inves)ga)on, the behavioral issues rate dropped from 14.86 for every 1 person served (over a three yearperiod), to2.70forevery1personserved(Figure20).
Most of the findings have examined how how different ways organiza)ons support people with IDD can impact health, but there were addi)onal findings related to the ways agencies treated their staff. When organiza)ons implemented ongoing staff development programs, the behavioral issues rate amongst the people they supported dropped significantly from 14.86 to 1.97 over the three year period (Figure 21). Similarly, when organiza)ons treated their employees with dignity, respect, and fairness, the behavioral issues rate dropped from 11.58 to 1.97 over the three year period (Figure 22). For example, an organiza)on that serves 500 people which does not treat their employees with dignity and respect is expected to have 5,800 behavioral issues over a three year period, whereas if they do treat their employees with dignity and respect the number is projected to drop to less than 1,000 behavioral issues, indica)ng the way staff are trained and treated trickles downtothebehaviorsofthepeoplesupported.
When organiza)ons provided con)nuous and consistent services and supports for each person, the behavioral issues rate dropped from 18.61 to 2.46 per person served over the three year period (Figure23).
Figure21.TheOrganiza)onImplements AnOngoingStaffDevelopmentProgram
(Prac)ce)
Behavioralissuesrate
(FY16
-18)
0.0
4.0
8.0
12.0
16.0
NotPresent Present
1.97
14.86
Figure22.TheOrganiza)onTreatsIts EmployeesWithDignity, RespectAnd
Fairness(Prac)ce)
Behavioralissuesrate
(FY16
-18)
0.0
3.0
6.0
9.0
12.0
NotPresent Present
1.97
11.58
Figure23.TheOrganiza)onProvides Figure 24.People Are Free From Con)nuousandConsistentServicesand Unnecessary, IntrusiveInterven)ons SupportsForEachPerson.(Prac)ce) (System)
30.0 18.6120.0
2.70
23.73
2.46 Behavioralissuesrate
(FY16
-18)
22.5
15.0
15.0
(FY16
-18)
10.0
Behavioralissuesrate
5.0 7.5
0.0 NotPresent Present NotPresent Present
0.0
19
Whenorganiza)onshadsystems inplaceand theywereput intoprac)ce, toensurepeoplewerefree from unnecessary intrusive interven)ons, the behavioral issues rate dropped from 23.73 forevery one person supported over the three year period to 2.70 (Figure 24). For example, for anorganiza)on that serves 500 people, the number of behavioral issues would be projected to godown from 12,000 to 1,400 for incidents over a three year period when people are free fromunnecessaryintrusiveinterven)ons.
Limitations and Directions For Future Study Wheninterpre)ngthesefindings,afewlimita)onsshouldbenoted.First,thisstudywasapilotwitharela)velysmallsamplesize(28agencieswhosupported3,000peoplewithIDD).Moreover,itwasasampleofconvenienceandtheagenciesinthesamplerepresentedoneumbrellaorganiza)on.Itshouldalsobenotedweconductedasecondaryanalysis;assuch,wedonotknowifhospitaliza)onswereappropriateorusedinlieuofprimarycare.Wedonotknowifinjurieswereinflictedbyothers,orpreventable.Wealsoneedmore informa)onabout training - is thereapar)cular training thatleads to beaer results for people receiving supports? Future research should replicate this studywithalargerandmorediversesample,addingaddi)onalvariablesandques)ons.
Conclusion Whiletradi)onalmeasuresofhealthareimportant,manyotherfactorsplayaroleinqualityservicesandsupports,andqualityoflife.Asindicatedinthefindingsabove,respect,meaningfuldays,stafftraining, and many more social determinants have an impact on hospitaliza)ons, injuries,medica)onerrors,andbehavioralissues.Weneedtoworktoensuremeasuresof‘value’areholis)candensurequalitymetricsarenotonlyvalue-basedbutvaluabletopeoplewithIDD.
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BUILDING THE FRAMEWORK FOR VALUE BASED MEASURES
What Is Quality?
‘Quality’ is rela)ve –what itmeans to different people and in different context can be open tointerpreta)on.Theaimofthesymposiumwastohelpdeterminewhatqualityservicesandsupportsfor people with IDD involves; key themes from discussions with the approximately 25 thoughtleadersarepresentedbelow.Althoughtherewereavarietyofdifferentthemesthatemergedoverthecourseoftheday,oneconsistentthemeemerged—allaaendeesbelievedqualityservicesgowellbeyondjust
“What is value? healthandsafetymetrics.Moreover,servicesandsupportsshouldnot Is it in the eye ofbe driven by regula)on alone, but rather by personal needs and the beholder?”preferences.
Althoughhealthandsafetyinandofthemselvesdonotwhollyencompassquality,theywereseenasthefounda)onalbuildingblocksuponwhicheverythingelseisbuilt.Infact,suppor)ngpeopletobe healthy and safe is an important aspect of suppor)ng them to achieve valued life outcomes.Peoplemust feel safe in their environments and be free from abuse, neglect,mistreatment, andexploita)on. It isalso importantthatconceptualiza)onsofhealthnotfocussolelyontheperson’simpairments,butratherthehealthofthewholeperson.PeoplewithIDDmustalsohaveaccesstohealthandwellnesssupports,suchasphysicalac)vityandnutri)on.
21
Once these founda)onal building blocks are in place, it is important to ensure people have ameaningfullife.PeoplewithIDDmustbesupportedtoreachtheirpoten)altolivealifeofquality.Quality necessitates a holis)c approach, which includes a wrap-around robust service deliverymodel throughout the lifespan,especiallyduring)mesof transi)on. In fact,aaendees recognizedtheimportantroleoffamilyindeterminingqualityasitisopennotonlythepersonwithIDDbeingsupportedbut the family aswell; as a result, thereareoutcomes that arealso relevant to familymembers.
Forquality servicesand supports, aaen)on shouldbepaid towards socialmeasures.Opencalledsocialdeterminantsofhealth(SDOH),thesesocialmeasuresincludethosefactorsthatcontributetohealth and quality of life (e.g., social support, access to opportuni)es, etc.), but are beyondtradi)onalhealthmetrics.
Informed Choice Oneofthemostcommonlydescribedaspectsofqualitywastrueinformedchoice.ItwasrecognizedthatpeoplewithIDDmustnotonlyhavechoices,butthesechoicesmustbebasedoninforma)onregarding numerous op)ons and opportuni)es. Examples of choice-making opportuni)es includepeoplewithIDDchoosingtheirgoals,whattheydoduringtheday(e.g.,wheretheyworkandplay),where and with whom they spend their )me, and where they live and with whom they live.Furthermore,effortsmustbemadetoprovideopportuni)estopeoplewhomaynotprimarilyuseverbal communica)on tomake choices; people who do not primarily use verbal communica)onneedtohavealterna)vemechanismstoexpresstheirwantsandneeds.
Person-Centered Practices and Meaningful Goals Ul)mately,informedchoiceisaboutcontroloverones’life–aboutservicesandsupportstrulybeingperson-centered.PeoplewithIDDmustbesupportedtofindtheirvoiceandbecomeempowered.PeoplewithIDDmustalsobecenteredintheirownlives–andhaveasayinwhatishappening.Assuch, a vast array of services must be designed around the person to meet their interests andchoices,ratherthanservicesandsupportsbeinglimitedbyasetmenuofservices.
Although person-centeredness is a cornerstone of quality, it was recognized that person-centeredness is unfortunately open s)ll a philosophy and not a prac)ce. Person-centered plans
must not only bedeveloped in such away that is relevant to
“Regardless of the person’s goals and desires, but monitored and adjustedregularly basedon feedback and)meliness. Furthermore, the
mechanism, it should goals in these plans must be meaningful and chosen by the
be person-centered.” personwith IDD.Asallpeoplegrowandchange,goals shouldbeevolveandchangeover)me,notbecomestagnant.
Community Living Communityintegra)onwasalsoconsideredacri)calaspectofquality.Communityisnotmerelyaplacepeoplewith IDDgoorhaveapresence, rather it is “aplacepeoplehaveastake in,aplacepeople feel they belong” (Hingsburger, 2017). Community integra)on is about engagement andbeingembeddedintothecommunity–itisaplacewherepeoplehaveconnec)onsandmeaningful
22
social roles.Arepeople spending)me in their community,doing things they likeandwant todo,and experiencing new things? Are they spending )me with non-paid people? Communityintegra)on means people with IDD not only develop social )es and rela)onships that result innaturalsupports,butalsoareintegralcommunitymembersthemselves. Meaningful Days Another common theme regarding the meaning of quality was ensuring people with IDD havemeaningful days, including community-based employment opportuni)es. Peoplemust be able tochoose what they do during the day, and those ac)vi)es must bemeaningful. Community employment outcomes must always bepriori)zed.Moreover,althoughpeopleshouldhavecommunity-based
“People need employment, having a job in the community is not enough; people to have a must have a job that is based on their personal choice, work the meaningful day.”amounttheywanttobeworking,andbesa)sfiedwiththeirjob.
Relationships Rela)onships were also frequently men)oned as a marker of quality services and supports,especiallybecausepeoplewithIDDopenfaceisola)onandloneliness.Qualityservicesandsupportsinvolveensuringpeoplewith IDDhavetherela)onshipsthataremost importanttothem.QualityservicesandsupportsalsohelppeoplewithIDDbuildrela)onshipsbeyondpaidstaff, includingbyextendingintotheircommuni)es.Servicesandsupportsshouldalsofacilitatecrea)onofanetworkofnaturalsupportsandlifelongconnec)ons.
Dignity and Respect Dignityandrespectwasrecognizedasavitalaspectofquality.Peopleshouldnotonlyfeelrespectedandvalued,butaspartofdignityandrespect,peopleshouldhavecontrolovertheirlivesandhave
23
real andmeaningful choices. Services andsupports should enhance dignity andrespect inboth systemsand inprac)ces.One central component of dignity andrespect is thedignityofrisk.Avoidanceofriskisopenfounda)onalinbuiltandsocialenvironments of peoplewith IDD (Perske,1972).However,“itisdifficulttolearnhowto make decisions and handle risk if thechance to undertake either of theseac)vi)es is denied… [providers are] keento encourage decision-making in theorybutunwillingtoallowchoicesthatresultinvery minimal risky behavior” (Hudson,2003,p.261).Ifpeoplewithdisabili)esaretruly to have equal opportuni)es, thisincludes the opportunity to take risks. Inalignment with dignity of risk, supportshould only be provided to the degreenecessary. The best support involvesbalancingdutyofcareanddignityofrisk.
Continuity and Security Con)nuityandsecuritywasalsodescribedasanaspectofqualityservicesandsupportsforpeoplewithIDD.Lackofcon)nuityandsecurityincludesthedisrup)onsinpeoplewithIDDs’ livesduetofactors suchas a lackofpersonaldecisionmaking, economic insecurity, andmost frequently, theservicesandsupportstheyreceivefromorganiza)ons.Theprovisionofservicesandsupportsfromhuman service organiza)ons open links people with IDDs’ lives to organiza)onal processes andchange.Assuch,thestability,tenure,andreten)onofDSPsisacri)calcomponenttothecon)nuityof services.While in the current service system, someDSP turnover is likely unavoidable, qualityservices and supportswork to ensure a lack of con)nuity does not result in unmet needs.Moreaaen)onisdrawntoworkforceissueslaterinthesummaryreport.
Embracing Technology Finally,aaendeesalsobelievedqualityinvolvescrea)veusesoftechnology.Technologyshouldnotonlybeembracedforthesakeofimprovingservicesandsupports,butalsou)lizedtoreduceunmetneeds.
Building Quality Frameworks Inaddi)ontounearthingtrendsinwhatqualityservicesandsupportsforpeoplewithIDDinvolve,thefindingsofthismee)ngalsorevealedpoten)alwaystobuildqualityframeworks.
24
Creating Quality Standards
“Start with outcomes and then determine the methods to get to those outcomes.”
Oneofthefirststepsindoingsoistocreatequalitystandards.Therewasarecogni)onthatacrossthecountrystatesaredoingdifferentthingsandeveryonewasworkingfromadifferentperspec)ve.Open these experiences and perspec)ves were siloed and not shared outside of the state ornetwork.Assuch, itwasrecommendedthatbestprac)ces inMedicaidmanagedcarenotonlybeestablished, but shared across networks and systems. Theremust be collabora)on across groupsandqualitybodies.
Itwasalsorecommendedthatqualitystandardsshouldbebasedondataandmeasures.Outcomemeasuresopenfocusontheavoidanceofnega)veoutcomes–nega)vethingsthatdidnothappensuch as reduced incidents, hospitaliza)ons, etc. – rather than measuring posi)ve outcomes in
people’s lives.Asonediscussiongroupnoted,“thekey ishowyou measure it and consistency in how you measure.” Mosteveryoneagreed,regardlessofthetoolortoolsthatareusedtomeasure quality outcomes, they should be person-centered,especially as there currently is a tension between person-centered services and funding wherein the expecta)ons forperson-centered services are high but the funding to supportthoseservicesislow.Somepar)cipantsfeltitwasnecessaryto
have a data collec)onmethodology that collects data at the individual level to be applicable toproviders andMCOs for value-based payments. The tool/s should also be mul)dimensional andexaminemanyperspec)ves(e.g.,theperson,theirfamily).
Symposium discussion also emphasized the need for common baseline understandings anddefini)onsofkeyconcepts,par)cularlyasvaluesopendifferdependingonperspec)ves(e.g,payer,government,peoplewithIDD,family,provider,etc.).Itwouldbeusefultohavecommondefini)onsof value-based systems among all par)es – a common language. For example, a commonunderstandingofthepurposeoftheHCBSsystemwouldbefrui�ulsincenotallsystemsorplayersunderstandtheuniquenessandnuancesoftheIDDHCBSLTSSsystem.Baselineunderstandingsandstandards would also make it easier to consistently execute value-based standards across thecountrybecauseeveryonewouldbespeakingthesamelanguage.
“Our values should be that people are treated with dignity and
respect, and able to reach their potential. If these values aren’t
embedded in the system, it’s just going to be about the cost.
The dignity of people is key.”
One suchway thatwas suggested tohelpset baseline standards was accredita)on.Accredita)on ensures consistency inquality standards across service andsupport providers. It was noted that “theabsence of accredita)on in this field is arealweakness.”Asitisbasedonconsistentstandards, accredita)on is a usefulfounda)on for value-based payments.Accredita)onmodelsmustlookatnotonlysystems, but also prac)ces from varyingperspec)ves – as both are necessary to
25
ensurethehighestqualityperson-centeredservicesandsupportsforpeoplewithIDD.
Producing Cultural Change Inordertocreatequalitystandardsandbuildbeaerframeworks,theremustbeculturalchange.Thecurrentservicesystemisverymuchentrenchedinthecultureandlegacyoffee-for-servicemedicalmodels. Fee-for-service models pay based on the number of services provided, rather than thequalityofthosesupports.Oldermodelsareopenfrequentlyrisk-averse.Incontrast,qualityvalue-basedservicesshouldaimtobuildservicesaroundtheperson,andnottheotherwayaround.Assuch,theremustbeavastarrayofservicesofferedandavailable.
Forthischangetooccur,theremustbeproviderbuy-in.Providersmustnotonlybeinformedoftheaimsandphilosophiesof thesechanges, theymustalsobe invested inmakingthemhappen.Thisorganiza)onal transforma)on is necessary at every level of the organiza)on, from the peopleprovidingdirectsupportstoorganiza)onalleadership.
Whilerecentlyashiphasbeguntowardsperson-centeredservicesandsupportsinregula)onsandpolicies, this ship is s)ll more of an abstract philosophy rather than a prac)ce. While thephilosophical change regarding focusing on a person’swhole life, such as the HCBS final seungsrule, is commendable, funding is not there to support real change – funding does not alignwiththese priori)es, making this transforma)on unaaainable for many people who receiveMedicaid
funded services. For example, workopportuni)es are open constrained byvery low day service rates, which arebased on congregate seungs and notindividual supports aligned with realwork.
Investing in Quality There can be no conversa)on aboutquality improvement without discussingcost and financing – the two are openintertwined. Par)cipants recognizedthere needs to be a recogni)on thatquality person-centered services andsupports for people with IDD are aninvestment. Quality is open in conflictwith funding, however. Truly commiungtocrea)ngpersonalizedservicesrequiresa robust and adequately funded servicedeliverysystem.
As such, there needs to be a focus onrates and rate structures. Rates need toreflect the desire to focus on a person’s
26
wholelifeandbeperson-centeredasisemphasizedinregula)onsandpolicies.Forexample,fundingisnecessarytoassuagethelongwai)nglistsofpeoplewhoaretryingtogetservices,par)cularlyascaregivers age andmore people need services. Funding con)nues to lag significantly behind thecommitment to create personalized services, and the quality of services and supports peoplereceive,andtheirqualityoflifeasaresult,canbesignificantlyhindered.
There isperhapsnobeaerexampleofaneedto invest inqualitythanDSPworkforce issues.Staffturnover and the lack of a stable and reliableworkforce is a chronic issue, and has a significantimpactonquality.Providersneedtohavetheabilitytopayfortalent,yettheabilitytodosoisopenoutoftheircontrolbecauseoffundinglimita)onsandratessetbythestate.In “If we could solve addi)ontoaninvestmentinstafffunding,thereshouldalso workforce issues, be an investment in staff development and training. Staff quality wouldn't be creden)aling couldbeausefulmechanism toexpand staff such a large issue - development.Quality services and supports also require acultural ship that treats DSPs themselveswith dignity and we'd have services with respect, par)cularly as the impacts of doing so trickles unlimited potential.”downtopeoplewithIDD.
Qualityframeworksdemandwealsolookattherela)onshipsbetweenservicesandoutcomes,andoutcomesandhealthcare.Bydoingso,therewillbemoreevidencethatbyemphasizingquality,andthemetricsdescribedabove,therewillbemoreopportuni)esforreturnsoninvestmentsandcostsavings.Forexample,reduc)onsinhospitaliza)ons,falls,incidents,emergencyroomuse,andstaffturnover can all result in cost savings for the system. These savings can then be shared and/orredistributed in order to increase the quality of services or supports provided. For example, costsavingscouldbeu)lizedtoincreaseDSPratesorincreasestaffdevelopment.
OnesuchmechanismtoencourageculturalchangeandfacilitatequalityisforStatesandMCOstoprovideincen)vepayments.Forexample,asDSPsplayacri)calroleinqualityservices,therecouldbe incen)ve payments for adop)ng DSP hiring best prac)ces, and/or development and training.Therecouldalsobeincen)vepaymentsforcustomersa)sfac)on.Anotherwaytocreateincen)vepayments would be to create a par)al deemed status for accredita)on. Providers could also berewarded for innova)on; doing so not only encourages dynamic services and supports, but alsogivesproviderstheflexibilitytoinnovate.
TherealsoneedstobeanalignmentbetweenwhatMCOsare
“Is it ethical to assign a incen)vizingandwhatprovidersaredoing,inordertoensure
monetary value to both groups are working towards and measuring the samething.Moreover,ifpaymentsareincen)vized,carefulaaen)on
quality of life?” needs to be paid to the ethics of aaachingmoney to qualityand value. Is it ethical to place a specificmonetary value on
quality of life and outcomes? For example, how does one put a price tag on the cost of trustedrela)onships,whichweknowareanimportantpartofcrea)ngqualityandvalue?Carefulaaen)ontotheseethicalquandariesrequiresdecisionsbaseduponevidence-basedbestprac)ces.
27
Tobuildqualityframeworks,paymentsystemsalsoneedtobestructuredsothatMCOscanensurethesmallbou)queprovidersareabletosurviveandarenotlepbehindinachanginglandscapefullofmergers and acquisi)ons. In fact, open these bou)que providers are uniquely able to providedynamicandpersonalizedservicesandsupportsbecauseoftheirsize.
Moreover,aaen)onalsoneedstobedrawntothebusinessprocessesandskillsofproviders.Inthemanaged caremarket, providersneed tobeable todevelopbusiness caseson the valueof theirservices. Knowinghowmuch services and support really cost ismore important thanever in theshipawayfromtradi)onalfee-for-servicemodels.
Conclusion Findings from our focus groups with thought leaders from across the country indicated thatalthoughhealthandsafetyarefounda)onalbuildingblocksofquality,theyarenotenough—it isimportant to ensure people with IDD have informed choice, community living, meaningful days,rela)onships,dignityandrespect,andmuchmore.Qualityframeworksdemandnotonlyevidenced-based best prac)ces but also a recogni)on that quality is an investment, both financially andphilosophically.
28
MOVING FORWARDThis report represents a culmina)onoffindings froma symposiumaaendedbyapproximately25thought leaders inthehealthcareandLTSS industryaswellasdataanalysis from28agenciesthatsupportapproximately3,000peoplewithIDD.Thesymposiumwasdesignedtobegindevelopingacommonunderstandingofvalue-basedqualitymeasuresforpeoplewithIDDastheindustrymovestomanagedcare.Whiletheul)mateaimistohavearoadmapforthekeymeasureswhichwouldsupportpeoplewithIDDtoreceivehighqualityservicesandsupports,thisreportservesasbutoneofmanyfirststeps.
Whilethesamplesizeofthepilotquan)ta)veanalysiswassmall,thefindingspointusindirec)onsforfutureresearch.Intermsofnextsteps,wewillexpandthesamplesizetoseeifthesamefindingsholdtruewithlargernumbers.Wealsoplantocon)nuetheconversa)onwiththesethoughtleadersandothersabouthowwecandefinequalitytomakeitmeaningfulforthosewesupport.This isanew partnership and we can all learn from each other’s experiences, posi)onali)es, andknowledges.
Takentogether,ourfindingsimplythatitmaybepossibletoimpactprogramma)ccostsbyshipingtofocusonfactorsthatimpactquality,suchasdignityandrespect,andmeaningfuldays.Thisreportis the first step in bridging the exis)ng social determinants of health and value-based paymentsliteraturewithLTSSqualityoflifework.Whileitispreliminary,itisuniqueandpromising,andshouldbepursuedwithvigor.
29
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APPENDIXMedian
NotPresent Present U
p(exact) r
HOSPITALIZATIONRATETheOrganiza)onRespectsPeople’sConcernsandRespondsAccordingly.(System)
2.57 1.03 16 0.005 0.47
SupportsandServicesEnhanceDignityandRespect.(System) 2.57 1.10 6 0.007 0.44
PeopleHaveMeaningfulWorkandAc)vityChoices.(System) 1.74 0.65 36 0.003 0.51TheOrganiza)onFacilitatesEachPerson’sDesireforNaturalSupports.(System) 2.86 1.15 3 0.02 0.34TheOrganiza)onHasIndividualizedEmergencyPlans.(System) 2.35 1.03 22 0.002 0.52
TheOrganiza)onTreatsPeoplewithPsychoac)veMedica)onsforMentalHealthNeedsConsistentwithNa)onalStandardsofCare.(Prac)ce)
2.77 1.10 14 0.045 0.33
APPOINTMENTRATEPeopleAreFreefromAbuse,Neglect,MistreatmentandExploita)on.(System) 24.84 12.16 35 0.04 0.33TheOrganiza)onImplementsanOngoingStaffDevelopmentProgram.(System) 26.08 12.34 27 0.04 0.35MEDICATIONERRORRATETheOrganiza)onTreatsPeoplewithPsychoac)veMedica)onsforMentalHealthNeedsConsistentwithNa)onalStandardsofCare.(Prac)ce)
14.92 3.13 4 0.004 0.47
PeopleAreFreefromUnnecessary,IntrusiveInterven)ons.(Prac)ce) 14.92 2.72 13 0.003 0.50INJURYRATETheOrganiza)onRespectsPeople’sConcernsandRespondsAccordingly.(Prac)ce)
12.61 5.84 29 0.009 0.45
SupportsandServicesEnhanceDignityandRespect.(Prac)ce) 12.77 5.98 20 0.035 0.35
PeopleHaveMeaningfulWorkandAc)vityChoices.(System) 9.38 3.02 38 0.004 0.49TheOrganiza)onFacilitatesEachPerson’sDesireforNaturalSupports.(System) 19.14 6.11 5 0.032 0.35BEHAVIORALISSUESRATETheOrganiza)onRespectsPeople’sConcernsandRespondsAccordingly.(Prac)ce)
11.07 2.70 35 0.02 0.39
PeopleHaveMeaningfulWorkandAc)vityChoices.(Prac)ce) 4.61 1.22 14 0.045 0.33
TheOrganiza)onEnsuresThorough,AppropriateandPromptResponsestoSubstan)atedCasesofAbuse,Neglect,MistreatmentandExploita)on,andtoOtherAssociatedIssuesIden)fiedInTheInves)ga)on.(Prac)ce)
14.86 2.70 18 0.03 0.37
TheOrganiza)onImplementsanOngoingStaffDevelopmentProgram.(Prac)ce)
14.86 1.97 34 0.003 0.51
TheOrganiza)onTreatsItsEmployeeswithDignity,RespectandFairness.(Prac)ce)
11.58 1.97 35 0.011 0.43
TheOrganiza)onProvidesCon)nuousandConsistentServicesandSupportsforEachPerson.(Prac)ce)
18.61 2.46 34 0.009 0.44
PeopleAreFreefromUnnecessary,IntrusiveInterven)ons.(Prac)ce) 23.73 2.70 11 0.002 0.53Note.Allratescontrolforagencysize.Ratesareperevery1personwithIDDsupported.
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