Respite Task ForceReport

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Respite Task Force ReportTable of Contents1 Acknowlegements

3 Preface

5 Executive Summary

8 Introduction

10 ConcernsIdentifiedThroughtheRespiteTaskForce

13 RecommendationstoImproveAccesstoRespiteandSupportFamilyCaregivers

13 Programmatic Suggestions

15 Administrative Suggestions

15 Summary

Appendix NebraskaLifespanRespiteNetworkBrochurewithStateMapofRegions

ThisprojectissupportedinpartbytheNebraskaPlanningCouncilonDevelopmentalDisabilitiesandthefederalAdministrationonIntellectualandDevelopmentalDisabilitiesfundsawardedtotheUniversityofNebraskaMedicalCenter’sMunroe-MeyerInstitutebytheNebraskaDepartmentofHealthandHumanServices.

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ThisprojectwasledbyJanetL.Miller,MS,respite/adultservicesassociatewiththeUNMCMunroe-MeyerInstitute(MMI).Ms.Millerpreviouslyservedastheprogramcoordinatorfor“Respite Across the Lifespan,” projectatMMIandoneofthesixregionalrespitenetworksofthestatewideNebraskaLifespanRespiteNetwork.Shehasworkedinthedisabilityfieldformorethan35years.

Forquestions,call402-559-5735oremailjanet.miller@unmc.edu.

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TheRespiteTaskForceisaworkgroupmadeupoffamilycaregivers,stateandcommunitynonprofitagencies,andcoordinatorsfromtheNebraskaLifespanRespiteNetwork.ThisgroupwasformedinOctober2017inresponsetoagrantawardedtotheUniversityofNebraskaMedicalCenter’sMunroe-MeyerInstitute(MMI)bytheNebraskaPlanningCouncilonDevelopmentalDisabilities.AlsoprovidingfeedbackweremembersoftheNebraskaSystemofCaregroup,facultyandstaffattheMMIUniversityCenterforExcellenceinDevelopmentalDisabilities(UCEDD),andtheUniversityofNebraska-LincolnCenteronChildren,FamiliesandtheLaw.Referencealsoismadetothe“NebraskaLifespanRespiteNetwork:ProducingPositiveOutcomesforFamilies2015-2017EvaluationFinalReport”.ThisrespiteevaluationwasconductedbyJoleneJohnson,Ed.D.ofMMI,madepossiblewithfederalfundingawardedbytheNebraskaDepartmentofHealthandHumanServicesLifespanRespiteProgram.

Partners on the Respite Task ForceNebraskaDepartmentofHealthandHumanServices(DHHS)Representatives:• DivisionofChildrenandFamilyServices• DivisionofDevelopmentalDisabilities• DivisionofMedicaidandLongTermCare• SixlocalLifespanRespiteNetworks

NebraskaCaregiverCoalition

AgingPartners,Lincoln

NebraskaTotalCare

Parentsandotherfamilycaregivers

NebraskaFamilyCollaborative(nowPromiseShip)

BrainInjuryAllianceofNebraska

SpecialEducationPara-Educator,BigSprings,Nebraska

UNMCMunroe-MeyerInstitute,UniversityCenterforExcellenceinDevelopmentalDisabilities

WewishtoacknowledgethemanyfamilycaregiversacrossthestatewhorespondedtoaneedssurveylookingatgapsandbarrierstoaccessingrespitecareservicesinNebraska.

ThisreportprovidesanoverviewofrespiteprogramsinthestateandaddressestheidentifiedgapsandbarrierstotheutilizationofrespitecareservicesinNebraska.MembersoftheRespiteTaskForce(hereafterreferredtoasRTF)generatedrecommendationstoaddresstheseissues.

Acknowledgements

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ThefollowingnarrativewaswrittenbyMandySullivanandMaryAnnCarson,amotheranddaughterwhoservedontheRespiteTaskForce.Thesetwofamilycaregiverspaintapictureofthesupportaffordedtofamilycaregiversinourstateandthenegativeoutcomesthatoccurwhensupportisnotprovided.

Carry Another Person’s Burden for a Few Steps, and You Can See for Miles

Carryinganotherperson’sburdenistheverydefinitionofrespite.Yet,howdoyougoaboutit?Howdoyousustainit?Thesearethequestionsposedbythosewhocontrolthefateofthisquintessentialprogram.Theansweris,youinvestinyourpeople,yourNebraskans.IfyouarefromNebraska,chancesareyouhaveheardindividualsfromotherstatessay,“Nebraskansarejustsodowntoearth.Whyisthat?”BecauseweNebraskansworkwiththeearth.WeworkwithMotherNature,andwehavelearnedthatwhenweworkagainsther,weloseeverytime.ThesameholdstrueforourNebraskafamilycaregivers.Ifthepoliciesandlawsworkagainstourcaregivers,wewillallloseeverytime.

Wewanttogrowourstate.WewanttheyoungtoreturntoNebraskaandcarrythelegacyoftheirparents.Theproblemis,thefamilyfarmhasbeensold.GrandpaandGrandmaoutlivedtheirmoney.MomandDadhadtoselltheirretirementinvestment,thefamilyfarm,topayforthe

$7,000-per-monthnursinghomebill.Therewasnotenoughhelporassistancetokeepthemhome.Nowthekidsandgrandkidshavenothingtoreturnto.

ThesameholdstrueforourNebraskafamilieswithachildwhohasadisability.Quiteoften,oneparentwillneedtostepawayfromtheircareerpathtocarefortheirchild’sspecialneeds,usuallycripplinganalreadystrainedhouseholdbudget.Forfamiliesintheagriculturalsector,thisequatestoequipment,livestockorlandsales.

Nebraskansareproudpeople.Theywanttocarefortheirown.Neithersnownorrainnorheatnorgloomofnightdetersthesecaregiversofthelandandlivestockfromcompletionoftheirduties.Neitherlackoffundingnorunfavorablegovernmentalpoliciesnorself-needdeterthesecaregiversfromthecompletionoftheirdutiesfortheirlovedones.

Preface

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Thetruthis,without“respite”thefamilycaregiverworkshimorherselfintotheground.Theyignoretheirownhealthneeds.Theyignoretheirownfinanciallimits.Theyignoretheirownsocialandemotionalneeds.TheyfindthemselvesabandoningtheirroutinereligiouspracticesbecauseGrandpagetstoodisruptiveduringtheservice.Theirmarriagesarestrainedbecausealltheirenergyisdevotedtotheirspecialneedschild,leavingthememotionlessfortheirspouse.Weeklyinvitationsforcoffeestopcomingbecausetheycanceledonetoomanytimes.Themostdevastatingoutcomeis,theyforgettoputontheirownlifevest,cancelingamammogrambecausetheirhusbandfellagainthismorning.

We’renotaskingformillionsofdollars.We’renotaskingfortractsofrealestatewithbrickandmortarfacilitiestofundandmaintain.We’reaskingyoutoinvestinyourpeople.Thepeopleyousofaithfullyserve–theNebraskacaregivers.Theverypeoplewhobelievedenoughinyoutogetthejobdoneright.Pleasebelieveinthemsotheycancontinuetodotheirjobright.

“Carryanotherperson’sburdenforafewsteps,andyoucanseeformiles.Lightenanotherperson’sloadandtogetheryoucancompletethejourney.”

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AccordingtoJillKagan,DirectoroftheAccesstoRespiteCareandHelp(ARCH)NationalRespiteNetworkandResourceCenter,1Nebraskahistoricallyhasbeenheldasanationalmodelforrespiteprogramming(2017).SuccessoftheNebraskaLifespanSubsidyProgram2becamethemodelforCongresstopasstheNationalLifespanRespiteCareProgramof2006,whichhasbeenreauthorizedannually.

Researchshowsthatfamilycaregiverscontinuallyfaceincreasedlevelsofdepression,stress,riskforheartdisease,andotherhealthconditions.3 Researchalsodemonstratesthatprovidingfamilycaregiversaccesstorespitedecreasescaregiverandcarerecipientstress(JoleneJohnson,2017),lowerssiblingstrain,4improvesmaritalquality,5 anddecreaseslong-termcareexpendituresby

1 https://archrespite.org2 http://dhhs.ne.gov/Pages/hcs_services_respite.aspx3 https://www.caregiver.org/caregiver-health4 https://www.canchild.ca/en/resources/206-respite-services-a-critical-review-of-the-literature5 https://link.springer.com/article/10.1007/s10803-013-1812-06 ImpactofRespiteCareServicesforFamiliesWithChildrenExperiencingEmotionalandBehavioralProblems.Children’s

Services: Social Policy, Research, and Practice, 3(1), 39-61).7 https://www.aarp.org/home-family/caregiving/info-08-2013/the-aging-of-the-baby-boom-and-the-growing-care-gap-AARP-

ppi-ltc.html

keepingindividualsintheirhomesratherthaninlong-termcarefacilities.6Asourpopulationages,theneedtoidentifystrategiestobettersupportfamilycaregiverswillbeparamountasthecaregiversupportratiodeclinesfrom1:7in2010to1:3by2050.7Thismeansthatforeverypersoninneedoflong-termcareservicesandsupports(LTSS)in2050,thereonlywillbethreefamilycaregiverswhowillbeavailabletoprovidethissupport.

TheEasternRegionoftheNebraskaLifespanRespiteNetwork,housedatMMI,wasawardedagrantfromtheNebraskaPlanningCouncilonDevelopmentalDisabilitiesinOctober2017totacklethepressingissuesaroundrespiteinNebraska.TheRespiteTaskForce(RTF)wasgatheredinNovember2017,comprisedofanarrayofstakeholdersfromacrossthestate,toactively

Executive Summary

Respite:Plannedoremergencycareprovidedtoachildoradultwithspecialneedsinordertoprovidetemporaryrelieftofamilycaregiverswhoarecaringforthatchildoradult.

Lifespan Respite Care Act definition (PL 109-442)

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collaborateinaddressingtheneedsoffamilycaregiversinNebraska.TheRTFmetmonthly,offeringface-to-facemeetingsaswellasreachingonlinestakeholdersfromacrossthestatethroughonlinetechnology.

ItwastheaimoftheRTFtodevelopaframeworktostrengthen,support,andexpandtheNebraskaLifespanRespiteNetworkandtoadvancethecapacitytodeliverrespitecareservicestofamilycaregiversinourstate.

BasedonsurveyresultsandRTFdiscussions,thisreportidentifiesgapsandbarriersinaccessingrespiteservicesaswellasrecommendationsonhowtoaddress

thesepressingissues.MembersoftheRTFworkedtoaddressrecommendations/strategiesatthesystemslevel,programmaticlevelandconsumerleveltostrengthenandimprovetheutilizationofrespiteservicesinallprograms.SpecialconsiderationwasgiventotheNebraskaLifespanRespiteSubsidyProgramwithintheDHHSDivisionofChildrenandFamilyServices,asitprovideswiderprogrameligibilityandflexibilityduetonotbeinggovernedbyMedicaidrules.

State and National Respite Programs

The Nebraska Lifespan Respite NetworkbeganwithagroupofindividualscomingtogetheratastatewideconferenceinAugust1997.Inthespringof1998,arequestforproposalswasissuedbyNebraskaDHHStoconveneastatewideinitiativetopromoterespite,developpermanentfunding,promotethedevelopmentoftrainingofprovidersandfamilies,andestablishacentralizedinformationandreferralsourceforservices.In1999,LB148wasintroducedbystateSenatorDennisByars.Thebillwaspassed,establishingtheNebraskaLifespanRespiteServicesPrograminstatestatute(Neb.Rev.Stat.§68-1520through1528).Itconsistsofthefollowing:

1. TheLifespanRespiteNetworkwasdesignatedtocoordinatecommunityrespiteservices;and

2. TheLifespanRespiteSubsidyProgramwasdesignatedtoprovidefundingforcaregiverstopurchaserespiteservices.

TheNebraskaLifespanRespiteSubsidyProgramiscentralizedandadministeredthroughNebraskaDHHSandsupportedwithstatefundingfromtheNebraskaCashSettlementTobaccoFund.TheLifespanRespiteNetworkbecameoperationalin2000.Thestatewasdividedintosixareas,contractswereawarded,andcoordinatorswerehiredforeacharea.Amapandlocalcontactinformationisincludedintheappendixofthisreport.

In1999,LifespanRespiteSubsidyProgramfundingwasmadeavailablewiththeratesetat$125permonthtooffsetthecostsofsecuringrespiteservicesforfamilies(Title464NAC1-4).Thelegislatureannuallyallocates$404,464foradministrativesupportand$810,000forservicestosupporttheNebraskaLifespanRespiteSubsidyProgram.Themonthlysubsidyamounthasnotbeenincreasedsincetheprogramstartin1999.

CAREGIVER SUPPORT RATIO

2010

YEAR In Need of LTSS Number of Family Caregivers

2050

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Thereareadditionalsourcesofrespitefundingavailableforfamilycaregivers.However,theamountsoffundingforrespiteservicesisoftenlimitedinscopeandrequiresstringenteligibilitycriteriawithnotwoprogramshavingthesamerequirements.Someofthesegovernment-fundedsourcesincludethefollowing:

• TheAged&DisabledMedicaidWaiver(Aged,AdultsandChildren)

• TheDevelopmentDisabilitiesWaiver

• AdultandChildProtectiveServices,FosterCare,SubsidizedAdoptions

• TitleIIIOlderAmericansAct

• U.S.AirForceExceptionalFamilyMemberProgramandVeteransCaregiverSupport.

Theneedtoenhancethesupportsprovidedtofamilycaregiversisgainingnationalattention.AbipartisanbillcalledtheRecognize,Assist,Include,SupportandEngage(RAISE)FamilyCaregiversAct8waspassedbyCongressandsignedintolawbyPresidentDonaldTrumpin2018.TheActcreatesanadvisorycouncilchargedwithmakingrecommendationstosupportfamilycaregivers.9

8 https://www.aarp.org/politics-society/advocacy/info-2017/senate-passes-family-caregivers-act-fd.html9 https://www.aarp.org/politics-society/advocacy/info-2018/senate-family-caregivers-act.html10 https://arch.wildapricot.org/resources/Documents/2016_Natl_Respite_Conf/PPTs/C-4%20J.%20Johnson%20Nebraska%20Eval.pdf

TheRTFdeterminedthatashortstatewiderespiteneedssurveytobuildupontheresultsofthepreviousrespiteevaluationauthoredbyUNMC/MMIin2015-201710wouldbebeneficial.Asurveywasdevelopedanddisseminatedacrossthestatethroughthesixlocalnetworks,onFacebook,anddistributedtoconstituentsofRTFmembers,throughagencynewsletters,andmore.Approximately250surveyresponseswerereceivedwithmanypeoplesharingstoriesabouttheirrespiteexperiencesandneeds.AdditionalinsightsweresharedbyRTFmembersdrawingfromtheirownpersonalexperienceswithrespiteandissuessharedbytheirfriendsandcolleagues.SimilarneedswereidentifiedbetweentheRTFsurveyandthe2015-2017evaluationconductedbyUNMC/MMI.

Theneedtosupportfamilycaregiverswillbecomeamorepressingissueasouragingpopulationrequiresmorelong-termservicesandsupports.Manystatesarestartingtoprovidemoreservicestobettersupporttheneedsoffamilycaregiverstoreduceordelaytheneedfor24/7servicesineffortstoreduceMedicaidexpenditures.

Nebraska Lifespan Respite Services Program Mission (Neb.Rev.Stat.68-1520through1528)

A service designed to give family caregivers a break from the demands of providing ongoing care for an individual with special needs.

Atermunfamiliartomany,respiteishelpforthehelpers.TheNebraskaLifespanRespiteNetworkprovidesinformationandreferral,providerandcaregivertraining,andresourcedevelopmentforrespiteservices.Theavailabilityandusageofrespiteenablesfamilycaregiverstimeforthemselvestorefreshandrejuvenate,thusimprovingtheirphysicalandemotionalhealth.

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Themajorityoflong-termservicesandsupportsareprovidedbyunpaidcaregivers–familyorfriends.11 AccordingtotheAmericanAssociationofRetiredPersons(AARP),itwasestimatedthatin2015thereweremorethan200,000familycaregiversinNebraska(thisnumbermaynotbeinclusiveofthosefamiliescaringforchildrenandadultswithintellectualanddevelopmentaldisabilities).FamiliesarethebackboneofNebraska’slong-termcaresystem.TheyprovidecaretotheirlovedoneswhoexperienceAlzheimer’sdiseaseandothertypesofdementia,thosewithintellectualanddevelopmentaldisabilities(IDD),thosewithsignificanthealthdiagnoses,andseriousemotionalandbehavioralconditions.Theyprovidecareacrossthelifespan,fromyoungchildrentoagingfamilymembers.

MostindividualswhoexperienceIDD,aswellasolderNebraskans,resideintheirfamilyhomes.Inordertoretainandsustainfamilycaregivers,theyneedabreak.AcriticalissueidentifiedbytheNebraskaPlanningCouncilonDevelopmentalDisabilitiesisensuringthatfamilycaregiverscanaccessrespitecareservices,especiallyforthosewithlovedoneshavinghighmedicalneedsandbehavioralhealthissues.OneoftheCouncil’sgoalsis to increase community inclusion for individuals withintellectualandotherdevelopmentaldisabilitiesofdiverseidentities.Onewaytoachievethisobjectiveistoexpandandenhancerespitecare

11 https://www.kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/* https://www.aarp.org/caregiving/financial-legal/info-2017/family-caregiving-costly-jj.html

servicesthroughoutthestate.Thisissupportedbythe2015-2017RespiteEvaluationthatdemonstratedthatindividualsprovidingcaregivingcansufferfromvariousserioushealthconditionsiftheydonothaveaccesstoatleastbriefperiodsofrespitetoenablethemtorefreshandrejuvenate.Familycaregiverswithoutaccesstorespitearemoreinclinedtoconsideralternateplacementsfortheirlovedones.Thislimitstheindividual’saccesstotheircommunityandfamilymembers.

Introduction

The economic impact of uncompensated care provided by family caregivers in 2013 surpassed total Medicaid spending ($449 billion) and nearly equaled the annual sales ($469 billion) of the four largest U.S. tech companies combined (Apple, Hewlett-Packard, IBM and Microsoft).*

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The process to access respite funding and usage is perceived as “too confusing and bureaucratic.”

Quote from surveyed family member

1.THEPROCESSTOACCESSRESPITEFUNDINGISCONFUSING.

Eachprogramthatprovidesrespitehasspecificrulesandrequirementspertainingtorespiteeligibility,usage,anddeterminationofaccesstorespitefunding.

• TheNebraskaLifespanRespiteSubsidyProgramissupportedwithstategeneralfundsandhasrequirementsforeligibilityandestablishedrequirementsforproviders.

• StateMedicaidWaiverPrograms(Aged&DisabledWaiverandDevelopmentalDisabilityWaivers)havetheirowneligibilityrespiterequirementsanddifferentrequirementsforproviders.

• TheNebraskaLifespanRespiteProgramstatuterequiresthattheLifespanNetwork(consistingofthe6regionalcoordinatorsacrossthestate)coordinateallcommunityrespiteprograms;however,inpractice,theLifespanRespiteSubsidyistheprimaryprogramsupportedbytheNebraskaRespiteNetwork.

EffortsareneededtosimplifytheNebraskaLifespanRespiteSubsidyeligibilityprocessforfamiliesandaligntherequirementsofrespiteprovidersacrossallprograms.

2.NEBRASKALIFESPANRESPITESUBSIDYAPPLICATIONANDELIGIBILITYPROCESS.

TheprocesstodetermineeligibilityfortheNebraskaLifespanRespiteSubsidyhasstringentfinancialguidelinesasreferencedinTitle464NAC1-4.12EffortstosimplifytheLifespanRespiteSubsidyapplicationprocesshavebeenattempted,butfamiliesstillindicatethattheapplicationprocessislongandcumbersome.Manyfamilieshavesharedthattheapplicationprocessisnotworththetimethatittakestoprovideallofthenecessarydocumentsandtocompletethepaperwork.Othersindicatethattheallocationof$125permonthdoesnotcovertheexpensesnecessarytoproviderespitecare.Oursurveyshowed,andtheNebraskaRespiteNetworkServicescoordinatorscorroborate,thatmany

12 http://dhhs.ne.gov/Documents/Title-464-Complete.pdf

familieswhoaredetermined“overincome”foreligibilityarestillstrugglingfinancially.Thisisparticularlytrueforfarmersandrancherswhoare“landrichbutmoneypoor.”Often,whenfamiliesareaskedtosubmitbankstatementsinordertodetermineeligibilityforthesubsidy,manyalreadyfeeltheywillbedeniedanddonotcontinuetheprocessbecausetheirfinancialsituationisverydifferentonpaperthaninactuality.

Recently,theNebraskaLifespanRespiteSubsidyProgramhasimplementedtwoinitiativesthatareworkingtohelpmeetfamilyneeds:theabilityforfamilieseligibleforthesubsidytobanktheirmonthlyallocationtouseforspecialrespiteactivities,andthecreationofanenhancementtofundingforfamilieswhohaveexceptionalneedsorcircumstance.Whilefamiliesmaybeeligibleforanadditional$1,000forExceptional Need/Circumstances,theycannotreceivethisfundinguntiltheyhavebeenapprovedfortheinitialLifespanRespiteSubsidyfunding,aprocesswhichcantakeanaverageofamonthormore.

Unfortunately,thiskeepsthosewhoareincrisisfromaccessingrespite.Manyfamilycaregiversareinfight-or-flightmodeandoftenhitapointwhereacrisisconditionisimmediatebut,becauseofthewayNebraska’sprogramsaresetup,theycannotaccessanyrespitesupportswithoutalreadybeingeligibleforaprogram.

Anotherconcernthatfamilieswhoaresubsidy-eligiblehaveisthepotentialtolosetheirprogrameligibilityiftheyarenotconsistentlyusingtheprogrammonthly.Familieswhodon’tbillfor60ormoredaysarecontactedbyaRespiteCoordinatorandofferedassistancewithlocatingproviders,instructedonbilling,givensuggestionsonhowtouseauthorizedrespitefunds,etc.Familiesareadvisedthatiftheydon’tbill,itindicatesalackofrespiteneed,andtheyriskhavingtherespitecaseclosed.Programstaffregularlyoffertobankunusedmonthstopreventfamiliesfromlosingrespitefunds.Unfortunately,this policy does not allow the family flexibility to self-direct respite services and denies families the ability to use respite supports when they need it.Forexample,afamilyfightingtheflubugreportedthattheydidnotwantanyrespiteproviderstocometotheirhomeforfearoftransmittingthevirus.Thefollowingmonth,therespiteproviderfellill.WithouttheRespiteCoordinatorsteppinginandsuggestingthatthefamilybankthesetwo

Concerns Identified Through the Respite Report

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months,basedonthecurrentprogram,thefamilywouldlikelyhavelosttheireligibilityforthisprogram.

3.PAYMENTPROCESSESANDBARRIERSLEADTOSLOWPAYMENTS.

SeveralrespiteprovidershaveindicatedthatNebraskaDHHSdoesnotpayinatimelymanner,creatingadditionalbarriersforproviders.However,muchoftheissueseemstobethatprovidersaresubmittingbillingdocumentswitherrors,includingnotkeepingaddressesupdated,havingincorrectdates,orchangingbankinginformationwhileapaymentisprocessing.Whenanerroroccurs,it’slikelythatDHHSwillrequestthatthefamily/providersubmitsanewbillingdocument.

Paymentprocessesvarybyprogrambutdosharetheissueofclaimsprocessinggoingthroughseveralstepsanddepartmentsbeforeapaymentcanbegenerated.NebraskaMedicaidiscurrentlyexploringelectronicoptionstomeetthe21stCenturyCuresAct.13HavingtheRespiteSubsidyProgramconsiderthismayreducepaymentprocessingtimesinthefuture.

Funding provided to family caregivers for respite services is perceived as “woefully inadequate.”

Quote from surveyed family member

4.INCREASETHENEBRASKARESPITELIFESPANWhiletheLifespanRespiteSubsidyprovideseligiblefamilieswithupto$125permonthforrespiteservices,familiescansupplementtheproviderpaymentandareabletodictateornegotiatetheratewiththerespiteprovider.However,thisfundingamountfallsveryshortforfamilieswhoprovidecareforindividualswithhighmedicalorbehavioralhealthneeds.Inadequatesubsidyfundingforcostlyspecializedin-homeorin-facilityrespitecareimpactsfamiliesandrespiteproviders.

13 The 21st Century Cures Act, signed December 13, 2016 by President Barack Obama, promotes and funds the acceleration of research into preventing and curing serious illnesses; accelerates drug and medical device development; attempts to address the opioid abuse crisis; and tries to improve mental health service delivery. The Act includes a number of provisions that push for greater interoperability, adoption of Electronic Health Records Systems (EHRS), and support for human services programs.

Whenfamiliesmustpay$25-$40perhourinordertoobtaintheservicesofaskilledprovider,thisallowsonlythreetofivehourspermonthofrespite,makingitdifficultforfamilycaregiverstoobtainasufficientamountoftimetotrulytakeabreakfromtheongoingresponsibilitiesofprovidingcare.Duetothelimitedamountoffundingprovidedbythesubsidy,manyfamiliesfinditdifficulttorecruitprovidersneededtomeetthehighercareneedsoftheirlovedoneorretainproviderswithwhomtheyhavedevelopedrelationships.

5.THEREAREGAPSINSUPPORTINGINDIVIDUALSWITHHIGHMEDICALNEEDSORWHOEXPERIENCEHIGHBEHAVIORALHEALTHNEEDSINBOTHHOMEANDAGENCYSETTINGS.

Familieswhoaresupportinganindividualwhomeetsanursinghome-level-ofcare,maybeeligibleforoneofthestate’sMedicaidWaiverPrograms.Sometimestheseprogramsmayprovidemorefundingforrespite.However,evenwiththisincreasedfunding,manyfamiliesindicatetheycannotfindproperlytrainedproviders.

“Respite money is not enough to pay for a caregiver with the skills necessary to meet my daughter’s needs: suctioning, tracheotomy care, low body temps, oxygen needs, feeding pumps, g-tube feeds and medications, lifting, transferring, positioning and so much more. My husband and I have not been

“My child was highly volatile, and we were unable to find someone qualified to provide respite for him for the money allotted by the respite program. Our child would have needed much more time to develop a relationship with the care provider and feel safe with them... When you have the fulltime care required of a child with serious mental illness, locating a cheap but qualified provider in the community is really burdensome and acts as a serious deterrent to families using the Nebraska system.”

Quote from surveyed family member

The Nebraska Respite Subsidy was established in 1999 and established the allocation of $125/month to family caregivers. This rate has not been increased since the program started – almost 20 years ago.

Quote from an RTF Stakeholder

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out, alone, for over 5 years. Not having respite not only affects the caregiver, it affects marriages and families.”

Quote from surveyed respondent

Thissentimentwasreflectedacrossthestateasfamilycaregiverswhoneedrespiteservicesthemostarefrequentlythosewhocannotfindoraffordthecostsassociatedwithpayingforhigherskilledworkers,suchasbehaviorspecialistsornursingstaff.Onefamilywrotethatthehusbandhadtoquithisjobinordertostayhomeandcarefortheirsonbecausetheywereunabletofindadequatecare.Anothermentionedtheyhadtomakethedecisiontomovetheirchildintoaninstitutionalfacilitybecausethestressofcaringfortheirchildwithnoback-upsupportwastoogreatfortheirfamily.

ThereisalsoaneedtoidentifywaystobettersupportIndependentproviders.Independentprovidersfacetheirownchallengesastheyassumetheriskofprovidingservices.UnderNebraska’scurrentsystem,incaseofinjurybythecarerecipientorintheeventanaccidentwouldoccur,thefamilyandcareproviderwouldhavetonegotiatethecostanddecidewhowillbeliable.Thisriskisfrequentlycitedasonereasonrespiteproviderswillnotprovidecareforthosewhohavehighercareneeds.Theseindividualprovidersareconsideredself-employedandmostlikelylackbenefitssuchasworkers’compensation,payfortheirownhealthcareinsurance,andfrequentlycannotaffordtonothavefundstoaddresstheseadditionalcosts.Theyarealsoresponsibleforpayingforalltheirincometaxeswhichalsocutsdeeplyintothelimitedhourlypaytheyreceive.

In order to keep families together and defer institutional placements, the state likely needs to invest in additional training for respite provider and other direct care staff.

6.MORESPECIALIZEDTRAININGFORRESPITEPROVIDERSISNEEDED

Thelackoftrainingforindividualrespitecareprovidersand,conversely,thecorrespondingpayincreasetypicallyidentifiedwithproviderswhohavereceivedcontinuingeducationarefrequentlycitedasbarrierstoaccessingqualifiedrespiteproviders.

14 http://dhhs.ne.gov/behavioral_health/SOC/Pages/Home.aspx

WhiletheNebraskaLifespanRespiteNetworkrequiresageneralonlineorientationfornetwork-screenedrespiteproviders,thisorientationonlycoversbasicinformationaboutprovidingrespitecare.Itdoes notaddressthespecializedskillsnecessarytoworkwithindividualswhohaveintellectualanddevelopmentaldisabilities,significantbehavioralhealthorhighmedicalneeds,includingAlzheimer’sdisease,stroke,ortraumaticbraininjuries.Additionally,thistrainingisnotrequiredacrossotherrespiteprogramsnoristhereanyconsistenttrainingrequirementacrossallstaterespiteprograms.There is a need to offer uniform training that leads to higher wages or a career-path which improves the quality of care and helps to sustain the current workforce.

TheNebraskaBehavioralHealthSystemofCare14partnersdiscussedthatevenwhentheyhaveindividualsskilledincaringforpersonswithmoresignificantbehavioralneeds,theyareoftenunabletogetthemtobecomerespiteproviders.Withoutasystematicapproachtotrainandretainbothindependentandagency-basedproviders,thestate’s3%unemploymentratemeansthatmanypeoplewhocouldberespiteprovidersrealizethattheycanmakemorebyworkingatfastfoodrestaurantsorlocalbusinessesandbeeligibleforpayraises,collegereimbursement,andbenefitspackages.

7.CAPACITYBUILDINGNEEDSFindingchildcarewasanotherconcernexpressedbysurveyrespondents.Familycaregiversstatethatthebarrierstoidentifyingchildcareproviderswilling/abletotaketheirchildwithspecialneedsdeterstheirabilitytoremainemployedandsupporttheirfamilies.Forexample,twodaycareprogramsinOmahaoriginallyestablishedtocareforthosewithmedicaland/orbehavioralneedshavestoppedservingchildrenwhohavemoreextensivebehavioralneeds.Oneofthetwoisfocusingonlyonchildrenwithmoresignificantmedicalneeds.

Respite coordinators frequently field calls by frantic parents/guardians looking for childcare for children with high needs. While childcare is not considered respite, obtaining more specialized childcare is a barrier for family caregivers and one that the state Respite Coordinators are frequently asked to meet.

LTC Stakeholder

“It takes a certain level of knowledge and experience to care for a special needs child with autism."

Family member quote

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“Honestly,thereneedstobefacilitiesacrossthestateforindividualswithseverebehavioralneedssowell-trainedstaffcanprovidetheshort-termbreaksthatfamiliesneed.WehavenothinglikethisinwesternNebraska.”

LTC sStakeholder

Barriersalsoexistforyoungadultswithdisabilitieswho,becauseoftheirage,areconsideredtoooldtobeindaycaresettingsbutstillneedsupport.Forexample,youngadultsontheautismspectrumtypicallyneedadditionalsupportsduringthesummermonthsandoverschoolbreaks.

Somefamiliesofchildrenoradultswithsignificantbehaviorsexpressinterestinhavingplacesoutsideofthehomewheretheirlovedonecanreceivecareonashort-termbasis.Manyfamilieswhohavechildren/adultswithco-occurringconditions(e.g.,mentalhealthanddevelopmentaldisabilities)havealsoexpressedtheneedforhavingmoreofabreakthanjustafewhoursofrespite.Theyareneedingadayorevenaweekendtobeabletotakecareoftheirwholefamilywithoutconstantlydevotingtheirundividedattentiontotheindividualwiththe

co-occurringcondition.ThisisacriticalissueacrossthestateofNebraskaasthereareverylimitednumbersofagenciesorindividualswhoaretrainedandwillingtoprovidecareforthoseindividualswithhighmedicalorbehavioralhealthneeds.

There is a need in Nebraska for places providing emergency or crisis respite care for those situations where the family is in a crisisortheindividualhappenstobeinabehavioralconditionthatmakesitunsafeforthemselvesortheirfamily.Frequently,respitecoordinatorsreceive incoming calls from stressed family caregivers looking foremergencyfacilitieswheretheycantaketheirlovedone.Currently,therearenotsufficientprogramsthatsupportfamiliesincrisis.Iftheyexist,thereareadditionalbarriersforthosewithbothdevelopmentaldisabilitiesandmentalhealthissues.These calls exceed the current services available within Nebraska’s Respite programs.Inthesesituations,theRespiteCoordinatorofferssupportandassistswithreferralstotheNebraskaFamilyHelpline,mentalhealthprovidersorlawenforcement,ifnecessary.

Recommendations to Improve Access to Respite and Suport Family Caregivers

ManyofthefollowingrecommendationsarespecificallytargetedtotheNebraskaLifespanRespiteNetworkandSubsidyprograms.However,thereareseveralrecommendationsthatapplytoallprogramsthatproviderespiteservicestosupportfamilycaregivers.TheRTFbelievesthathavingthestateprogramsworktogethertobettersupportfamilycaregiverswillleadtobetteroutcomesforboththecarerecipientandcareprovider.ThiswilllikelyalsoreduceMedicaidexpendituresbysupportingthefamiliesandkeepingthemintheircaregivingroleandtheindividualswhoneedlong-termcareoutsideofcostlyinstitutionalcare.

Programmatic Suggestions

1. Increase the Lifespan Respite Network Subsidy rate. TheNebraskaLifespanRespiteSubsidyprogramshouldbeincreasedfromthe$125monthlysubsidythatwasestablishedwhentheprogramwascreated.Theincreaseshouldaccountforthecostoflivingincreasesthathaveoccurredinthepasttwentyyearsandshouldalsoestablisharequiredcostoflivingincreaseforfutureyearssotheprogramwillremaincompetitiveandviable.Additionally,therespitesubsidyshouldprovideahigheramountoffundingtothosefamilieswhoareproviding

careforindividualswhohavehighercareneeds.AssessmentsadministeredbytheNebraskaDivisionofDevelopmentalDisabilitiescouldbereferencedasonewaytodeterminethelevelofcareanindividualneedsandcorrespondingfundingallocatedtomeettheindividual’sneeds.

2. Pilot the use of Medicaid Support Waivers. In an efforttokeepindividualsinlesscostlyhome-andcommunity-basedsettings,andtodecreasethewaiting

14

listsforhome–andcommunity-basedservices,statesarestartingtoimplementMedicaidSupportWaivers.Thesewaiversprovidealimitedbudgettofamiliesandbudgetpredictabilityforstates.Familiesareallocatedasetbudgetwhichcanbeself-directedandutilizedtopayforrespite,transportation,andspecializedchildcareasexamples.StatessuchasTennessee,Pennsylvania,andMassachusettsareimplementingthesewaiverswithanannualbudgetrangestartingat$12,000.15 16 17Thiswouldalsoremovetheissueofnotutilizingservicesinauniformbasisfrommonthtomonthorhavetheprograminterruptedwithoutinterventionbythecaseworker.

ItisrecommendedthattheDivisionofChildren&FamilyServicesandNebraskaLifespanRespiteNetwork,togetherwiththeDivisionofMedicaidandLongTermCare,plantosubmitforaMedicaidSupportWaiver.Initially,theNebraskaLifespanRespiteSubsidystatefunds(TobaccoCashSettlementFunds)couldbeusedtopilotalimitednumberoffamilysupportwaiverslotstodemonstrateimpact.ThiswouldallowdatatobecollectedinordertobuildthebusinesscasetoexpandtheprogramthroughaMedicaidmatch.

Family Support Waivers could:• Provideahigherannualbudgettoenable

familiestopayprovidersahigherrate,thusbettercompensatingproviderswhohaveobtainedspecializedtrainingtosupportindividualswithhighmedicalandbehavioralhealthneeds.

• Helpretaineffectiveproviderswhohavedevelopedrelationshipswiththefamilyandcarerecipient.

• HelpremediatemanyconcernsarticulatedbyNebraskastakeholdersbyallowingfamiliestodirecttheirbudgettoprovidefortheservicestheyneed.

• ExpandstatefundingwithMedicaidmatchtobothenhanceandmaximizethesupportavailableforfamilycaregivers.

TheNebraskaLifespanRespiteNetworkcouldcoordinatethisnewprogram.ThisprogramshiftalignswiththeoriginallegislativeintentoftheNebraskaLifespanRespiteNetworkandSubsidyProgram,andalsoalignswiththenetwork’scurrentsustainabilityplan.Medicaidmatchcouldbeutilizedforrespiteservicecostsandcouldbeusedtosupporttheadministrativecostsassociatedwiththerespitecoordinatorsalaries,

15 TennesseeCommunityFirstChoice:https://www.tn.gov/content/dam/tn/tenncare/documents/introductionToEcfChoices.pdf16 MarylandFamilySupportsWaiverFrequentlyAskedQuestions:https://dda.health.maryland.gov/Documents/Family%20Supports%20Waiver%20

FAQs%207-10-17%20Final.pdf17 PennsylvanioaPerson/FamilyDirectedSupportWaiver:http://www.dhs.pa.gov/learnaboutdhs/waiverinformation/personfamilydirectedsupportwaiver/

index.htm

whichcreatesbothenhancedfundingandprogramsustainability.

3. Provide a higher reimbursement for providers who must drive long distances to provide care. In manylocations,respiteprovidersmustdrivesignificantdistancesinordertoofferin-homerespitecareservices.Thisistrueinrural,urban,andwesterngeographicareas.Drivingtoaperson’shomeencompassesboththeprovider’stimeandmoney.Thecostofgasandupkeepontheirvehiclesareexpensesthatcurrentlyarenotreimbursed.WhiletheNebraskaLifespanRespiteSubsidyProgramwillallowfamiliestopayahigherratetooffsettheseexpenses,thiscutsintothefamilies’fundingtoaccessrespite.Thelackofreimbursementcandeterindividualprovidersfromwantingtotravellongdistancestoprovidein-homerespitecare.DHHSshouldconsiderallocatingahigherreimbursementforfamilieslivinginruralcommunitiesorforproviderswhomustdriveoverasetnumberofmiles(20milesormore).

4. Identify strategies to eliminate the risk to families and providers. Familiesconsistentlyindicatethattheycannotfindproviderswhoarewillingtoprovidesupportforthosewithhighmedicalandbehavioralhealthneeds.Arootcauseforthisistheself-directedconsultantmodelthatNebraskausesfortheNebraskaLifespanRespiteProgram.Underthismodel,theriskofprovidingcareforanindividualwithhighneedsissharedbyboththefamilyandtheprovider.Unfortunately,inatimewheneventhebestofintentionscanresultinalawsuit,manyindependentprovidersfeeltheycannotaffordtotakeontheriskofprovidingcareforsomeonewithhighneeds.Mostindependentprovidersdonothavethefundstopurchaseliabilityorworkers’compensationinsurance,orevenhaveadequatehealthinsurancetopayforanunintendedinjurytothemselvesortheircarerecipient.However,thereareoptionsthatwouldlikelyremovethesebarriers.

A. Set up agreements with agencies in each local network to provide respite.DHHScouldcontractwithdevelopmentaldisabilityagencies,childcareprovidersorassistedlivingfacilities,payingthemadailyrateforfamiliesdeemedeligiblefortheLifespanRespiteSubsidyProgram.Asuggestionwouldbetoallocatetwodayspermonthofrespitecareinanagencysetting.Agencieshaveliabilityinsuranceand

15

typicallyoffermedicalandworkers’compensationinsurancetotheirstaff,sothemajorityoftheriskisshoulderedbytheprovidingagency.Thiswouldgivefamilieswhoareprovidingcareforanindividualwithhigherneedstheopportunitytohaveabreakwhiletheirlovedoneissupportedinasettingthatcouldaccommodatetheirneeds.

B. Adopt a fiscal intermediary agency model. As partofthestate’slong-termcareredesign,apriorityrecommendationistoutilizeafiscalintermediaryagencytomanageindependentproviders.18ThereportbytheNationalAssociationofStatesUnitedforAgingandDisabilities(NASUAD)explainsthatthiswillhelpindividualshireandtraintheirownprovidersbutnothavetheresponsibilityfor

18 http://dhhs.ne.gov/medicaid/Documents/Nebraska-Long-Term-Care-Redesign-Plan.pdf19 http://dhhs.ne.gov/medicaid/Documents/Long%20Term%20Care%20Redesign%20Plan%20-%20Draft%20by%20Mercer%20Health%20Benefits,%20

Inc%20v2.pdf(seepages28-29)

payrollortaxwithholding,norpurchaseworkers’compensationandliabilityinsurance.TheuseofafiscalintermediaryminimizestherisksthatNebraska’scurrentmodelplacesonboththerespiteproviderandthefamily.DHHScouldsubcontractthisroleouttoacommunity-basedorganizationorissueacompetitiveRequestforProposalsforanorganizationtoassumetheroletomanageallindependentrespiteprovidersacrossallNebraskaprograms.TheRespiteNetworkcoordinatorscouldserveasthebrokerageservice,detailedintheNASUADreport,whichwouldbeneededtoprovidethesupportsforindividualsandfamiliestolocateandtrainrespiteprovidersforthosewhochoosetoparticipate.19

Administrative Suggestions

1. Investigate a change in policy when considering a family’s assets in determining financial eligibility for the Lifespan Respite Subsidy. Farmers,ranchers,andothersmayappeartohavesignificantassetsonpaperbutactuallyhaveverylimited“liquid”assetsavailabletopayforthecostofrespitecare.WhiletheRTFbelievesthattheincomeguidelinesforeligibilityareprettylenient,itwasfeltthatadjustmentsshouldbeconsideredforthosewhoseassetsareattachedtolandandequipmentandretirementaccountsthatarenotreadilyconvertedintocash.

Note: Program currently disregards irrevocable burial funds, educational savings accounts while child is school-age, retirement savings for working-age adult, and IDEA savings.

2. Improve the current billing system requirements for providers to receive payment for providing respite services. FamiliesandtheirrespiteprovidersmustsubmitDHHSbillingdocumentsmonthly.BothfamiliesandprovidershaveexpressedconcernandfrustrationinhavingtocompletemonthlybillingdocumentsintheirentiretywhentheDepartmentalreadyhasmostoftheinformationonfile.WhileDHHShasamulti-stepreviewandapprovalbillingprocess,thereisaneedtoimproveefficienciesandstreamlinethisprocess.Paymentdelaysoccurwhenstafffindbillingdocumentswhichhavenotbeencompleted,resultingintheprovidernotgettingpaidfortherespiteservicestheyprovidedthepreviousmonth.Improvementsneedtobemadetoboth

billingrequirementsandreimbursementprocesses.TheNebraskaLifespanRespiteNetworkhaslostrespiteprovidersduetotheslowpaymentprocess.

3. Streamline the application process for those individuals seeking to become respite providers. Currently,theNebraskaLifespanRespiteNetworkisworkingtodevelopanonlineapplicationprocessforthoseapplyingtobecomeindependentrespiteprovidersthroughtherespitewebsite(www.nrrs.ne.gov).ThiswillexpeditethescreeningprocessforthoseinterestedinbecomingarespiteproviderfortheNebraskaLifespanRespiteNetwork.However,becausetherearedifferentrequirementsforrespiteprovidersacrossprograms,familiesarenotabletodrawfromonesinglepoolofrespiteproviders.Instead,anyonewhoisanindependentprovidermustgothroughaseparateprocessforeachprogramtobereimbursed.Thisprocessisconfusingformanyprovidersandlimitstheproviderpool.Tohelpstreamlineandsimplifythisprocess,encouragingthesamerequirementsacrossallprogramsmaybebeneficial.AnotheroptionmightincludehavingtheRespiteNetwork-screenedprovidersgothroughthesameprocessrequiredbyMedicaid-fundedprograms.

4. Address the lack of understanding of how respite is defined and where to go to access services. Whilemanyindividualswhorespondedtooursurveyappearedtoknowaboutrespite,wealsolearnedthatsomefamiliesarenotawareofwhatrespiteactuallymeans.TheRTF

16

reviewedtheexistingNetworkbrochureanddeterminedmoreclarificationwasneeded.Anewrespitebrochurewasdrafted,reviewedbytheRTF,andfinalizedbyDHHSgraphicdesignersandapproved.AcopyofthenewlydesignedbrochureisincludedinthisreportintheAppendix.Additionaloutreachwillbeneededtohelpfamilycaregiversunderstandtheimportanceofrespiteandhowtheycanaccessthisvaluableprogram.

TherearemanyactionableactivitiesthatcanbeimmediatelyadoptedbytheNebraskaLifespanRespiteNetworkandotherDHHSprogramstobettersupportfamilycaregivers.Asprogramshaveshiftedfrominstitutionalplacementstosupporthome-andcommunity-basedsystems,theincreasedcaregivingdemandsplacedonfamilycaregivershavenotbeenadequatelyaddressed.Theadverseimpactsofprovidingcontinualcarebyfamilieswhoarealsoworkingisbecomingasignificantpublichealthissue.Asourpopulationagesandthecorrespondingdemandsoffamilycaregiversincrease,itisimperativeforstatestoidentifywaystoenhancethesupportsprovidedtofamilycaregiversnow.Researchconsistentlydemonstratesthataccesstorespitecareisonewaytoimprovebothcarerecipientandcaregiverhealth.Whentheburdenoffamilycaregiversislightened,thesecaregiversaremoreabletocontinueintheircaregivingrole.

Summary

17

Pro

vid

ers

Wan

ted

Are

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u in

tere

sted

in

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in

dep

end

ent

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ou e

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• Do

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ith

fam

ilies

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mak

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fam

ily

care

give

r’s li

fe a

littl

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sier

?

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act y

our l

ocal

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pite

Coo

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nato

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num

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iste

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th

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to n

rrs.

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aid

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aive

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ed, A

dults

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ren)

• Ad

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spon

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ctiv

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Pro

gram

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Life

span

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Su

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ir Fo

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M

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gram

• Ve

tera

ns C

areg

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Sup

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CFS-

PAM

-26

5/2

018

Appendix

18

Wh

at is Resp

iteH

elp for the helpers. Respite is a break for unpaid fam

ily caregivers caring for a loved one w

ith special needs.

Respite allows the fam

ily caregiver tim

e away to care for their personal

needs.

Research shows that w

hen family

caregivers take time for them

selves, they im

prove their physical and em

otional health.

You can use respite to:

• G

o to the grocery store

• Visit the doctor

• H

ave lunch with a friend

• Take a nap

• O

r anything else you need or w

ant to reduce stress

Am

I a Family C

aregiver?

A family caregiver is a person w

ho provides ongoing care for an individual unable to care for them

self due to age, physical or m

ental disability, or illness. If your loved one cannot be left alone due to a special need, w

e can help.

Co

ntact Yo

ur Lo

cal Co

ord

inato

r to Learn

Mo

re:

Western A

rea308-432-8190respite@

wchr.net

Southw

est Area

308-345-4990respite@

swhealth.ne.gov

Central A

rea308-745-0780 ext. 139respite@

centralnebraskacap.com

Northern A

rea308-745-0780 ext. 145respite@

centralnebraskacap.com

Southeast402-300-8448southeastrespite@

unmc.edu

Eastern

402-559-5732eastrespite@

unmc.edu

SIO

UX

DA

WE

SS

HE

RID

AN

BO

X B

UTTE

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OTTS

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FFM

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RC

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UG

LAS

SA

RP

Y

CA

SS

Western

No

rthernC

entral

So

uth

west

So

uth

east Eastern

Wh

at is the

Neb

raska Lifespan

R

espite N

etwo

rkCaregiving is rew

arding, but also dem

anding and stressful. We offer

information, education & support.

We are th

e place

to co

ntact

to d

iscuss yo

ur

respite n

eeds.

Wh

o P

rovides R

espite

There is some flexibility in finding

providers. Your local Respite Coordin- ator can assist you w

ith finding a provider in your area. You m

ay be able to use fam

ily mem

bers, friends or neighbors as paid providers. Depending upon funding source, other possibilities include: organiza-tions, cam

ps, a trusted agency, a local volunteer-led organization or group, volunteer-led school-based program

, equine program

, faith-based or other approved activities. W

hile your loved one is attending an activity, you are getting a break —

and that’s what

respite is all about!Yo

u can

locate screen

ed resp

ite pro

viders

at: nrrs.n

e.gov/resp

ite

Click o

n: “Fin

d a P

rovider”