California Children’s Services Program: Title V Needs Assessment … · 2019-10-11 · California...

California Children’s Services Program: Title V Needs Assessment 2018-2019

Jennifer Rienks, PhD, Adrienne Shatara, MPH, Linda Remy, PhD, & Gerry Oliva, MD, MPH, Family Health Outcomes Project at the University of California, San Francisco

Sept. 25, 2019 Sacramento, CA

Today’s Objec/ves

• SummarizetheNeedsAssessment(NA)process,ac7vi7esandkeyfindings

• Reviewcriteriaforpriori7zingproblems/issuesforprogramimprovements

• Review,refineandpriori7zeproblems/issuesforISCDtoaddressinthenextfiveyears

• DiscussnextstepsandsolicitvolunteersforworkgroupstodevelopTitleV2021-2025Ac7onPlan

UCSFFAMILYHEALTHOUTCOMESPROJECT 2

Acronyms

•  AAP=AmericanAcademyofPediatrics•  CM=CaseManagers•  CSHCN=ChildrenwithSpecialHealthCareNeeds•  CYSCHN=ChildrenandYouthwithSpecialHealthCareNeeds•  DHCS=DepartmentofHealthCareServices•  HHA=HomeHealthAgency•  ISCD=IntegratedSystemsofCareDivisionintheDepartmentofHealthCareServices

•  MCHB=MaternalChildHealthBureau•  MCP=Medi-CalManagedCarePlan•  PT=PhysicalTherapists•  OT=Occupa7onalTherapists•  SARs=ServicesAuthoriza7onRequest•  SDOH=SocialDeterminantsofHealth• WCM=WholeChildModel

CSHCN Six Core Objec/ves From MCHB-HRSA

1.   FamiliesofCSHCNarepartnersindecision-makingatalllevels,andaresa7sfiedwiththeservicestheyreceive

2.  CSHCNreceivecoordinatedongoingcomprehensivecarewithinamedicalhome

3.  AllCSHCNwillbeadequatelyinsuredfortheservicestheyneed


CSHCN Six Core Objec/ves (cont.)

4.  Childrenarescreenedearlyandcon;nuouslyforspecialhealthcareneeds

5.   ServicesforCSHCNwillbeorganizedsofamiliescanusethemeasily

6.  Allyouthwithspecialneedswillreceiveservicesneededtosupportthetransi;ontoadulthood


Needs Assessment Process

CCS Needs Assessment and Ac/on Plan Goals

• Withinbudgetandlegisla7veconstraints,determineAc#onpriori7estobeaddressedduringFY2021-2025

• Iden7fythemostimportantandpoten7allyeffec7vechangesCCScanmaketoimproveservicesforCCS-eligiblechildrenandthesystemsthatsupportCSHCN



TitleVAssessmentandPlanningCycle

Convene Stakeholders Group

Assess the Needs of CCS Families

and Identify Program Issues

Set Priorities Among Identified

Needs/Issues

Analyze Problems and Develop Intervention

Strategies

Develop Five-Year Action Plan

Implement Identified Strategies/Interventions

Monitor Objectives and Performance Indicators

Convene Stakeholders Group

Stakeholdersrepresenta7veofkeyinterestgroups:

• Families

• CCSCountyPrograms

• Provider/Community/AdvocacyOrganiza7ons

• ManagedCarePlans

• Government/StateAgencies

• Academia

Stakeholdersprovideinputinallaspectsoftheneedsassessmentandwilldecidepriori7es


Assess the Needs of CCS Families and Iden/fy Program Issues

•  WorkedwithStakeholderstoiden7fykeyissuesandexis7ngdatasources

•  Collectedaddi7onaldatainanitera7veprocess:◦  KeyInformantInterviews◦  FocusGroups◦  OnlineSurveys

•  ReviewedalldataandfindingswithStakeholdersviawebinars(4)andmee7ngsandconferencecallswithSubcommigees(12+)


Key Informant Interviews

• Withthekeyinformantinterviewsubcommigee◦  Developedinterviewguideandques7ons◦  Iden7fiedandrecruitedpar7cipants

• 16KeyInformantinterviewswithapprox.20individualsconductedfromOctobertoDecember2018

• Par7cipantsincludedMDs,CCSProgramstaff,reps.fromchildren’shospitals,aWCMHealthPlan,professionalorganiza7ons,otherDHCSdepartmentreps.

UCSF FAMILY HEALTH OUTCOMES PROJECT 11

Focus Groups

•  Workedwithfocusgroupsubcommigee◦  Developedinterviewguideandques7ons◦  Iden7fiedtypesofgroupsandrecruitedpar7cipants

•  9focusgroupswereconductedbetweenNovember2018andFebruary2019◦  CCSfamilies(26par7cipants)

!  2groupsinSouthernCA,1groupinNorthernCA◦  CCSproviders(25-30par7cipants)

!  2groupsinSouthernCA,1groupinNorthernCA◦  CCSadministrators(20-25par7cipants)◦  1groupNorthernCA,1groupwithCCSAdministratorsfromWCMCoun7es

◦  WCMHealthPlans(8par7cipants)


Online Surveys

! Workedwithsurveysubcommigee◦  Developed3surveysusinginforma7onfromstakeholders,keyinformants,andfocusgroups◦  Recruitedrespondentstocompletethesurveys

! CSHCNFamilySurvey-3,419responsesfromCCSfamiliesusedinPRELIMINARYanalyses,numberofresponsesfromnon-CCSCSHCNtobedetermined◦  AdministeredinEnglishandSpanish

! CCSProviderSurvey-188responses! CCSAdministratorSurvey-44responsesrepresen7ng39Coun7es


Family Survey: Region, Demographics, and Survey Method

Whoaskedyoutocompletethissurvey? %CountyCCS 74.2HealthPlan 24.5LocalFamilyResourceCenter 0.7FamilyVoices 0.1ChildrenNow 0.0Mychild’sdoctor 0.5Missing 15.4

Howdidyoucompletethissurvey? %AtCCSaspartofannualpaperwork 5.3Atmychild’sspecialist 1.4Byphone(someonecalledme) 54.8Bycomputer(SurveyMonkey) 11.0Bysmartphone(SurveyMonkey) 12.7InterviewedoverphoneinEnglish 8.0InterviewedoverphoneinSpanish 6.3Interviewedoverphoneotherlanguage 0.6Missing 12.5

Region % #NorthMountain 11.4 391 BayArea 25.1 857 Sacramento 4.7 162 CentralCoast 3.9 133 SanJoaquin 4.4 152 LosAngeles 2.2 75 Orange 1.1 37 SanDiego 4.5 154 Southeast 42.5 1,452 Missing 0.2 6

White 22.6 Black 5.0 Hispanic 55.4 Asian/PI 7.0 AIAN/Other/Mul7 6.3 Missing 3.7

Family Survey: Demographics and Survey Method

Child’sAge %Newborn-5 30.7 6-10 24.4 11-13 14.2 14-16 14.0 17-21 16.3 Missing 0.5

Income %Lt$20,000 18.6 $20,000-$34,999 25.2 $35,000-$49,999 14.5 $50,000-$74,999 8.1 $75,000-99,999 3.0 $100,000orover 5.3 Missing 25.4

Highestlevelofeduca7oncompletedbysurvey

respondent %Middleschool 6.4 Somehighschool 10.1 HighschoolorGED 23.8 Somecollege 26.1 Collegebachelordegree 10.0 Graduatelevelorhigher 5.1 Missing 18.5

Provider Survey Respondents (N = 188)

 IncludedPediatriciansandPediatricSubspecialists;NursesandNursePrac77oners;Physical,Occupa7onalandSpeechTherapists;SocialWorkers,andOthers(Die77ans,CaseManagers,TherapyAssistants)

 50%arecurrentlyCCS-Paneled

Prac7ceSepng % Ter7aryMedicalCenter(Non-Kaiser) 9.2 Children’sHospital 21.3 KaiserTer7aryMedicalCenter 10.9 Stand-alonespecialtyclinic 8.1 Primarycareprac7ce(private) 2.9 Primarycareprac7ce(public) 2.9 FederallyQualifiedHealthCenter(FQHC) 7.5 Other*(pleasespecify) 53.5

* Other setting is most frequently a Medical Therapy Unit (MTU)

%ofPrac7cethatareCCSPa7ents %

0-25% 17.7% 26-50% 14.9% 51-75% 10.3% 76-100% 51.4% Don’tknow/Notsure 5.7%

CCS Administrator Survey Respondents

• 44responsesrepresen7ng39Coun7es• Currentposi7onsofrespondentsincludeCCSAdministrators,Programmanagers,PublicHealthNurses,DirectorsofChildren’sMedicalServices,DirectorsofNursing

• Yearsincurrentposi7onrangefrom1monthto20years,about25%havebeenintheircurrentposi7onfor10yearsormore

Priori/za/on Criteria

Criteria for Priori/za/on of Issues/Problems

1.  Reviewpriori7za7oncriteriadevelopedbyWorkgroup

2.  Voteonweightsforcriteria


Next Step: Develop Five-Year Ac/on Plan Timeline: October 2019 - February 2020

•  Solicitstakeholders’inputforac7onplans

•  WorkwithCCSstateandlocalstafftodevelopgoalsandSMART(Specific,Measurable,Achievable,Realis7c,andTime-bound)objec7ves


Criteria Development Process

•  Stakeholdersprovidedinputonselec7nganddefiningcriteriaatini7alstakeholdermee7ng

•  Subsequentworkgroupwebinarsselectedmanageablenumberofcriteria,andfurtherdevelopedandrefinedselectedcriteria

•  Currenttask–voteonweightsforthecriteriathatwillbeusedtopriori7zeproblems/issuestobeaddressedinnextfiveyears


Priori/za/on Criterion 1

Whatistheimpactonchildren’s(CYSHCN)healthofaddressingtheissue/problem?Defini;on/Concept:Theimpactsofaddressingtheissuecanrangefromnoimpactonfamilyorthesystem,tomoderate(e.g.reduc7onindelaysincare),tolarge(e.g.preven7ngdeathorpermanentdisability,prolonginglifeorimprovingqualityoflife).Healthimpactsincludephysicalandmentalhealthaswellastheoverallqualityoflifeforthechild,theirfamily,andtheircommunity.

Ra;ngScale:

•  0=Noimpact

•  1=Smallimpact,reduceshindrancesthatdon’treallyhavelong-term,nega7veconsequences

•  2=Moderateimpact,reducesdifficul7es(e.g.reducesdelaysincare)butonlyshort-term,posi7veimpact

•  3=Severe/Largeimpact,reducesormi7gateslong-term,nega7veimpacts(e.g.preventsdeathorpermanentdisability)



Doesaddressingtheissuereducedispari;esinhealthcareaccessand/orhealthoutcomes?Defini;on/Concept:Oneormorepopula7onsubgroupsofCYSHCNasdefinedbyrace/ethnicity,income,insurancestatus,gender,geography,ordiagnosishaveworseaccessand/orpoorerhealthoutcomesthanthegeneralgroup,andthataddressingtheproblemwouldreducedisparity.

Ra;ngScale:

•  0=AddressingtheissueDOESNOTreducedispari7esinhealthaccess/outcomes

•  1=AddressingtheissueDOESminimallyreducedispari7esinhealthaccess/outcomes

•  2=AddressingtheissueDOESmoderatelyreducedispari7esinhealthaccess/outcomes

•  3=AddressingtheissueDOESsignificantlyreducedispari7esinhealthaccess/outcomes



Dowehave,orcanweaccess,thefinancialresourcestodowhatisneededtosucceed?Defini;on/Concept:Financialresources=fundsfromFederal,State,andLocalgovernment;founda7ongrants;partnercontribu7ons/investment;etc.Ra;ngScale:

•  0=Nofinancialresources•  1=Somefinancialresources•  2=Availableresourcesincomplete,e.g.wehavethecapacitybutneedtofindthefinancialresources;wehavethefinancialresourcesbutneedtobuildcapacity

•  3=Adequatefinancialresources



Dowehavethecapacityandwilltodowhatisneededtosucceed?Defini;on/Concept:Capacity/willincludeshavingallofthefollowingfactors:theresources(includinginfrastructure,personnel,and/ortrainingcapacity),poli7calwill,parental/familywill,communitywill,poten7altobuildonexis7ngefforts,andthepoten7alforpartnerships.

Ra;ngScale:

•  0=Nocapacity,nowill•  1=Somecapacityorsomewill,butnotboth

•  2=Strongcapacityorstrongwill,butnotboth•  3=StrongcapacityANDstrongwill



Arethereevidence-basedorbestprac;cestrategiestoaddresstheissue?Defini;on/Concept:Evidence-basedmeanssupportinresearch/evalua7onliterature.Bestprac7ceshavenotbeenformallyvalidatedbutarerecommendedbyexpertsorbyinformalevalua7onsoflocal,stateorna7onalprograms.

Ra;ngScale•  0=Therearenobestprac7cesavailable•  1=Therearebestprac7cestrategiesavailable,buttheyarenotyetevidence-based

•  2=Therearesomeevidence-basedstrategiesthatcouldbeimplemented

•  3=Thereareevidence-basedstrategiesthathaveabroadimpact



Willaddressingtheissueeasetheburdenonfamilies?Defini;on/Concept:Burdensthatfamiliescanfaceinclude:social,economic,emo7onal,psychological,physical,geographic/transporta7on,etc.Someexamplesofaddressingissuesthatcandecreasefamilyburdeninclude:in-homesupport,respitecare,supportgroups,7melyreceiptofservicesandsupplies.Ra;ngScale:

•  0=Notlikely•  1=Somewhatlikelytoeasetheburden•  2=Likelytoeaseburden•  3=Verylikely


Sample Priori/za/on Tool INSTRUCTIONS:Belowisabrieflis;ngofeachofthecriterionthatyouwillbeusingtorateeachofthepoten;alpriori;es,andtheweightsforeachcriterioninthebluebox.PleaserefertoandusetheaccompanyingPRIORITIZATIONCRITERIAsheetfordetailsonthecriterionandscoringdefini;ons,and,foreachpriority,putinascoreforeachofthecriterion(0-4)intheboxesbelow.Aformulaisusedtothattakeseachofyourcriterionscores,mul;plyitbyitsweight,andthenaddthemalltogetherforatotalscoreforeachpriority.

Criterion#1:Whatistheimpactonchildren’s(CYSHCN)healthofaddressingtheissue/problem?

Criterion#4:Dowehavethecapacityandwilltodowhatisneededtosucceed?

Criterion#2:Doesaddressingtheissuereducedispari;esinhealthcareaccessand/orhealthoutcomes?

Criterion#5:Arethereevidence-basedorbestprac;cestrategiestoaddresstheissue?

Criterion#3:Dowehave,orcanweaccessthefinancialresourcestodowhatisneededtosucceed?

Criterion#6:Willaddressingtheissueeasetheburdenonfamilies?

Poten;alPriorityC1 C2 C3 C4 C5 C6

TotalScoreTBD TBD TBD TBD TBD TBD

0

0

0

0

0

0

0

0

0

Vo/ng on Criterion Weights

• Thera7ngscalesonthepreviousslidesaredesignedtoallowustoevaluatehowwelleachiden7fiedproblemmeetseachcriterion

• Weightsareusedtocomparethecriteriawitheachothertodeterminewhicharethemostimportant

• Weigh7ngcriteriaallowyoutogivesomecriteriamoreweightthanothersingenera7ngascorewithwhichtodeterminewhichproblemsCCSshouldaddress.Weuseascaleof0to4,with4beingthemostimportant

• Weigh7ngcriteriashouldresultinlargerdistribu7onofrankingofpriori7es

To Vote on Criteria Weights Online:

• hgps://www.surveymonkey.com/r/CCS_CrWeight

Summary of Key Findings

Goal 1: Families Are Partners

• MCHBOutcome:Familiesofchildrenandyouthwithspecialhealthcareneedspartnerindecision-makingatalllevels,andaresa7sfiedwiththeservicestheyreceive.


Families Are Partners: What We Heard

•  ManyparentsverygratefulforCCS,andfocusgrouppar7cipantswerepar7cularlythankfulthattheDHCS/ISCDhadFHOPconductfocusgroupsaspartoftheneedsassessment

•  ParentsareconfidentinCCSproviders

•  Parentswhohavelivedtheexperiencecanhelpotherparentsnavigatethesystems,learnwhattoexpect,andprovidesupport

•  Moreparentgroupsandparentsupportareneeded

•  ThereisnostatutorylanguagespecifyingthatwhenachildqualifiesforCCSservices,thelocalFamilyResourceCenterwillbesentareferraltofollowupwiththefamily(thisdoeshappenwhenachildreceivesRegionalCenterservices)

•  SomeconfusionaboutwhatservicesCCScoversandwhatMedi-Calcovers,moreconfusionforthosewithCCSandprivateinsurance

•  “CCShasbeenabighelp,majorsurgeryat[localchildren’shospital]recentlythatwentreallywell.TheOTsandPTsaregreatandveryknowledgeableabouttheMDsat[localchildren’shospital].Nocomplaintsaboutthem.Onlythingthatishardformeisthattheydon’thaveazerhoursfortherapy(OT),hehasbeenmissingschoolandgepngdepressedbecauseheisn’tdoingwellinschool.”


Families Are Partners: What We Heard

InFamilyFocusGroups:

•  Themajorityoffamiliesemphasizedtheimportanceoftheirrela7onshipsw/CMs

•  Forthemostpart,familiesfeeltheyaretheprimarycoordinatorsofcare.

• Whenitisn’tjustthem,therapistsfromMTUsorspecialistsweremen7onedmostassome7mesalsocoordina7ngcare;whenaskedwhocoordinatescarefortheirchild,oneparentsaid:


“Wedo!Parentscoordinatecarefortheirchildren.Butbeyondthat,MTUsseemtohaveyearlycareplans.Physicianshavecareplansforspecificdiagnoses,butnotspecifictothechild.CCSneverprovidesuswithacareplan.”

Families as Partners: Family Survey Doyouandyourdoctor/providerworktogetheraspartnerstomakehealthcaredecisions? %Always 65.9 Usually 20.9 Some7mes 9.2 Never 4.0

Doyouandyourdoctor/providertalkabouttherangeoftreatmentandcarechoicesforyourchild/youth? %Always 66.8 Usually 20.3 Some7mes 9.5 Never 3.4

Howozendidyourchild’sdoctorand/orotherhealthcareprovidersspendenough7mewithyouandyourchild? %Always 64.6 Usually 25.7 Some7mes 8.2 Never 1.5

Doesyourproviderhonoryourrequestsforothers(extendedfamily,communityelders,faithleadersortradi7onalhealersthataredesignatedbythefamily)topar7cipateintheprocessthatleadstodecisionsaboutcare? %Always 59.7 Usually 20.1 Some7mes 7.8 Never 12.4

Haveyourchild’sdoctorsorotherhealthcareprovidersworkedwithyouandthischildtocreateawrigenplantomeetthechild’shealthgoalsandneeds? %Yes 66.6 No 21.3 Donotknow 12.1

Families Are Partners: Provider Survey


29.3%31.6%

21.3%

4.0% 2.9%

10.9%

0%

5%

10%

15%

20%

25%

30%

35%

FamilieswouldbenefitfromCountyCCSprogramsbeingrequiredtoconvenefamily

advisorycommigees

StronglyAgree SomewhatAgree Neutral

SomewhatDisagree StronglyDisagree Don’tKnow/NotSure

Case Management: Family Survey

Hasyourchild/familybeenassignedacasemanager?

%

Yes 46.8 No 20.6 Donotknow 22.9 Missing 9.7 Ifcasemanagerassigned,how

sa7sfiedhaveyoubeeninthepast12monthswithhowyourcasemanagerhelpsyourchildconnectwithservices?

%

Always 71.4

Usually 21.7

Some7mes 5.9

Never 1.0

Ifcasemanagerassigned,whatagency?Checkallthatapply.

%

CountyCCS 73.7 HealthPlan 6.2 RegionalCenter 19.6 CCSSpecialCareCenter 18.9 Other 6.9 Missing 1.9

Sa/sfac/on with CCS and Health Plan: Family Survey


Overall,howsa7sfiedareyouwiththeCCSprogramonascaleof0(notatall)to10(very)?

%

0to5 4.8 6to8 24.6 9 10.8 10 59.8

Whatisyouroverallsa7sfac7onwiththeservicesthatyourHealthPlanprovidesforyourchild?

%

0to5 6.5

6to8 24.7

9 12.6

10 56.2

Goal 2: Medical Home

MedicalHome-amedicalhomecanbeaphysician'soffice,ahospitaloutpa7entclinic,acommunityhealthcenterorschool-basedclinic,aslongasitprovidestheservicesthatcons7tutecomprehensivecare–con7nuousaccesstomedicalcare;referraltopediatricmedicalsubspecial7esandsurgicalspecialists;andinterac7onwithchildcare,earlychildhoodeduca7onprogramsandschoolstoensurethatthespecialneedsofthechildandfamilyareaddressed(AmericanAcademyofPediatrics)

hgps://mchb.hrsa.gov/research/strategic_defini7ons.asp


Medical Home: What We Heard •  InconsistentMedicalHomesforCYSHCN

•  SpecialtycarecenterscanbeMedicalHomesinsomecases

•  Fundinglimita7onspreventMedicalHomecapacityofsomeproviders

•  LocalCCSAdministratorsknowmanydoctorsaretrying,butnotalwayssuccessful

•  MedicalHomecapacityvariesbygeography

•  EMR&EHRarenotalwaysbuilttoaccommodatetheMedicalHomeconcept

AccessIssues

•  Lackofpaneledprimarycareprovidersandspecialistsinruralareas

•  LongdrivestoSpecialCareCentersforthoseinruralareas

•  Somefamiliesexperienceagreatdealoftroubleanddelaysingepngappointmentswithspecialists

•  Lackofpaneledmentalhealthproviders


Medical Home: What We Heard DurableMedicalEquipment

•  DelaysingepngDMEandsomeequipmentunavailablebecausecosttovendorlessthanreimbursement

•  LackofDMEor7melyDMEleadingtohospitalscoveringcostssochildcanbedischargedordelaysindischarge

•  Vendorshaveahard7megepngreimbursedthroughCCS=delays&fewerwillingvendorsasaresult

Communica;onbetweenProviders

•  Needforbegercommunica7onbetweenprimaryandspecialtycareprovidersandotherswhoservechild

Workforce/CapacityIssues

•  Manybarrierstophysicianpar7cipa7oninCCS–delaysinpayments,complexpaperwork,challengesdealingwithMedi-CalManagedcareplans

•  Reduc7onsofstaffatthestateleveltoadministerCCSandprovideleadership,enforcestandards,panelphysicians

•  Budgetcutsandlossoftrainedstaffatthelocallevel


Medical Home: What We Heard

•  “Difficul7eswithMedicalHomeisthatsomepediatriciansarereallyafraidofourpa7ents—ifourpa7entsareimmunosuppressedthatscaresclinicpediatriciansinthearea.Wedon’thavealistoftheonesthatwilltakethemanddowell,andwedon’tknowwhichoneswillworkwithourpa7ents,andwealsodon’tknowwhatinsurancethegoodonestake.Pa7entsinthefartherflungcommuni7eshaveaharder7me…”–ProviderSurvey

•  “Ithinktheanswervarieswiththegeographicregionyouaretalkingabout.Weareaverypediatrician-richcommunitybecauseofthehospitalsthatwehave—havefedpediatriciansintothecommunitythathavestayed.Wearepregyluckyinthatthepediatriciansinourcommunityarepregygoodatprovidingcarecoordina7on,becauseourkidsarelow-incomeandthepayisn’tverygood,andtheprivateMDscan’ttaketoomanykidswithMedi-CalsoFQHCscoverthegapsbecausetheyarenotscaredofthelowreimbursementrate.”–AdministratorSurvey


Medical Home: Na/onal Survey of Children’s Health (NSCH)

43.2% 42.2%

56.8% 57.8%

0%

10%

20%

30%

40%

50%

60%

70%

US California

%ofCSHCN,ages0through17,whohaveamedicalhomethatmeetsthemedicalhome

criteria(2016+2017)

CareMEETSmedicalhomecriteria CaredoesNOTmeetmedicalhomecriteria


Medical Home: Provider Survey*

What would your prac/ce need to become a medical home for CCS clients? % Addi7onalresources(e.g.financialreimbursements,morestaff) 46.9 Nothing,IhaveeverythingIneedtobeamedicalhomeforCCSclients 9.9 Nothing,thereareotherreasonsformynotprovidingamedicalhomeforCCSclients 6.2 Don'tknow/Notsure 29.6

•  48.8% Consider their practice to be a medical home for CYSHCN based on AAP definition of medical home

•  28.0% Do not •  23.2% Don't know/not sure

AreyoucurrentlypartofaHealthPlanthatissuppor7ngyourprac7cetobecomeamedicalhome?

•  21.3%Yes •  32.0% No•  46.7% Notsure/Don’tknow

*Note: For medical home questions, survey results include only physicians and nurses

Ra7ngofimportanceofthefollowingresourcesthatcouldenableyourprac7cetobeaprimarymedicalhomeforCCSclients

5-VeryImportant

Electronicmedicalrecordsystemthatlinksprimarycarewithpediatricsubspecialtyproviders 57.8%

Abilitytomakeinformalconsultsandcontactswithsubspecialtyproviders(email,phoneconsulta7on,and/ortelemedicine) 56.3%

Reimbursementforlongerofficevisits 61.9%

Supportstaffforcasemanagement/carecoordina7on 70.3%

Adequatereimbursementforcarecoordina7onandcasemanagementservices 64.1%

Readilyavailabletreatmentguidelinesforpa7entswithspecificdiagnoses/condi7ons(e.g.,neurofibromatosis,seizuredisorders) 40.6% Readilyavailablecommunitylevelresources(e.g.,RegionalCenter,FamilyVoices)formypa7entsandtheirfamiliestomeettheirsocial,psychosocial,andhomehealthneeds 50.8%

Availabilityofsubspecialtypediatricprovidersinmynetwork 66.7%

Directmechanismforcommunica7onandinterac7ngwiththechild’sschool 31.3%

Medical Home: Provider Survey

Accessing Health Care: Family Survey

IsthereaplacethatthischildUSUALLYgoeswhentheyaresickandyouoranothercaregiverneedsadviceabouthisorher

health?

%

Yes 66.9No 18.8Donotknow 5.5Missing 8.9

Duringthepast12months,howmany7mesdidyourchildseeadoctor,nurse,orotherhealthcareprofessionalforsick-childcare,

well-childcheck-ups,physicalexams,hospitaliza7onsorotherkind(s)ofmedical

care?

%

0 2.9 1 9.1 2-3 32.6 5-7 17.2 8+ 28.5 Missing 9.7

Duringthepast12months,howmany7mesdidyourchildvisitahospital

emergencyroom?

%

0 49.2 1 19.1 2 9.7 3 5.3 4+ 7.0 Missing 9.8

Diagnoses Diagnoses TotalMildMod Sev

Agen7ondeficitdisorderoragen7ondeficithyperac7vedisorder(ADDorADHD)

10.235.0 43.421.7

Allergies 25.246.8 36.916.3

Anxietyproblems 15.039.3 43.217.4

Arthri7sorjointproblems 11.127.5 45.327.1

Asthma 15.051.2 34.314.5

Au7sm,Asperger’sdisorder,pervasivedevelopmentaldisorder(PDD),orau7smspectrumdisorder(ASD)

8.335.3 32.132.6

Behavioralorconductproblems 13.133.0 45.421.6

Blindnessorimpairedvision 23.141.7 34.723.6

Bloodproblemsotherthanhemophiliaorsicklecellanemia

4.239.4 25.535.1

Brokenbones 6.946.1 27.926.0

Cancer,tumors 5.327.4 30.841.9

Cerebralpalsy 18.831.3 38.730.0

Hasadoctororotherhealthcareproviderevertoldyouthatyourchildhadorhasanyofthecondi7onsinthelistbelow?Ifyes,doesthechildcurrentlyhavethecondi7on,andis/wasthatcondi7onmild,moderate,orsevere?(checkallthatapply)

NumberofCondi7ons

%Any

1 31.72 17.33 11.94 9.55 7.66-7 10.58+ 11.7

Diagnoses (cont.)

Diagnoses Total MildMod Sev

Clezlip/clezpalate 3.638.838.822.5

Congenitalheartdisease 9.839.630.430.0

Cys7cfibrosis 1.144.028.028.0

Diabetes 8.221.548.629.8

Depression 7.349.137.313.7

Dentalproblems 15.342.240.717.1

Developmentaldelay 29.531.932.136.0

Downsyndrome 2.634.529.336.2

Epilepsyorseizuredisorder 13.933.436.430.2Gene7cdisorder 11.819.130.550.4Headinjury,concussion,ortrauma7cbraininjury

7.527.131.941.0

Hearingloss 16.425.142.432.5Heartproblems 13.243.231.225.7Hemophilia 0.855.616.727.8HIVorAIDS 0.475.012.512.5Infec7ousdisease 1.747.428.923.7


Diagnoses (cont.)

Diagnoses Total Mild Mod Sev

Intellectualdisability 17.4 28.2 31.840.1

Intes7nalorgastrointes7nalproblem 17.3 27.3 44.528.1

Kidneydiseaseorotherkidneyproblems

7.4 29.7 41.828.5

Liverproblems 2.3 40.0 36.024.0

Lungdisease 5.7 29.1 37.833.1

Mentalhealthproblem(Otherthandepression)

5.0 31.3 39.329.5

Migraineorfrequentheadaches 9.1 43.1 40.116.8

Musculardystrophy 3.0 20.9 31.347.8

Sicklecellanemia(traitordisease) 0.9 40.0 25.035.0

Spinalbifida 2.8 24.6 34.441.0

Spinalcordinjury 1.6 41.7 22.236.1


Access to Specialty Care: Family Survey

Specialistsaredoctorslikesurgeons,heartdoctors,allergydoctors,skin

doctors,andotherdoctorswhofocusononeareaofhealthcare.Howmany

differentspecialistdoctorshasyourchildseeninthelast12months?

%

0 10.91 35.92 26.53 15.54+ 11.2

Howmany7mesdidyourchildseeaspecialist(s)inthelastyear?

%

0 7.61 18.92 20.23 12.34 10.65+ 30.4

Inthelast12months,howozenwasyourchildabletoseeaspecialistwhenneeded?

%

Always 74.2 Usually 19.2 Some7mes 5.5 Never 1.1

Inthelast12months,howozenwasyourchildabletoseeaspecialistina

quickand7melymanner?

%

Always 59.8 Usually 26.2 Some7mes 11.2 Never 2.8

Access to Specialty Care: Family Survey

• Whattype(s)ofspecialist(s)wereyouNOTabletoseeinaquickand7melymannertable

• 19.2%offamiliesreportnotbeingabletoseeatleastonetypeofspecialistinaquickand7melymanner

Specialist % Allergy/Immunology 4.6 Cardiology 9.3 Dermatology 5.5 DevelopmentalMedicine 5.0 Endocrinology 9.5 Gastroenterology 14.8 GeneralSurgery 3.0 Gene7cs 7.5 Gynecology 1.1 Hematology 2.4 Nephrology 3.5 Neurology 23.0 Neurosurgery 10.5 NewbornMedicine 1.2 Nutri7on 4.0 Ophthalmology 16.3 Otolaryngology 10.5 Plas7cSurgery 2.4 Psychiatry 5.0 Pulmonology 8.4 Rheumatology 1.4 SportsMed/Orthopedics 10.4 Urology 4.7

Access Issues: Data from the California Specialty Care Collabora/ve (CSCC)

Averagepa7entwait7meforthefollowingspecial7esthatexceeded15businessdaysforthe3rdnextavailableini7alappointment

Specialty DaysOrthopedics 16Hematology/Oncology 16Infec7ousDisease 16Gastroenterology 20Urology 22Endocrinology 23Plas7cSurgery 23Otolaryngology 25Rehabilita7onMedicine

26

Psychiatry 31Pulmonary 31Pallia7veCare 30Rheumatology 32PainServices 33Nephrology 44Neurology 41Ophthalmology 45Metabolic 54MedicalGene7cs 73

Subspecialty MonthsGeneralSurgery 14MedicalGene7cs 14Allergy 14Behavioral/Developmental 14Otolaryngology 15Rehabilita7on 15Pallia7veCare 16PulmonaryMedicine 18Neurology 18OrthopedicSurgery 21Metabolic 23Ophthamology 22CardiothoracicSurgery 24Dermatology 24

Average length of time CSCC members have been recruiting for certain subspecialties that exceed one year

Service Needs and Care Received Duringthepast12monthswasthereany7mewhenyourchildneededthefollowingservices:

%Receivedcare(%)

Total AllSome None

Communica7onaidsordevices 5.1 80.6 8.6 10.8

Dentalcheckup/teethcleaning 19.3 88.0 7.6 4.4

Durablemedicalequipment 13.3 85.9 7.7 6.4

Eyeglassesorvisioncare 13.8 87.0 8.5 4.5

Hearingaidsorhearingcare 4.8 83.3 9.8 6.8

Homehealthcare 5.4 82.4 8.1 9.5

Hospitaliza7on(in-pa7entstay) 10.5 90.6 6.6 2.8

Mental/behavioralhealthcare 6.2 84.1 7.6 8.2

Medica7ons 19.3 89.0 7.2 3.8

Otherdentalcare 3.7 77.5 9.8 12.7

Painmanagement 14.2 86.1 9.5 4.4

Physical/occupa7onaltherapy 11.3 33.4 36.4 30.2

Specialtycare 12.6 87.8 9.0 3.2

Speechtherapy 10.1 85.8 9.8 4.4 Substanceabusetreatment/counsel

0.1 50.0 0.0 50.0

Well-childcheck-up 18.3 90.6 7.0 2.4

X-rays 12.6 91.0 6.4 2.6

AnyServicesNeeded

%

1 16.7

2 15.8

3 14.7

4 14.1

5-6 19.4

7+ 19.4

Access to Care: Challenges in Rural Coun/es •  “Difficultyaccessinglocalservices-withtheruralnatureofourcounty,ourchildrenandfamiliesmusttravelanywherefrom4-6hourstoaccessspecialtymedicalservices.Becauseofthis,ouragendancetoappointmentsisdifficultanditcanbehardtomaintainserviceswithoutregularappointments.Ourfamiliesknowtheimportanceofagendingregularappointments,butsimplycannotmakethemduetodistance,weather,inabilitytotake7meoffwork,andhavingmul7pleotherchildrenwithsomealsohavingspecialmedicalneeds”–CCSAdministrators’Survey

•  Providers,CCSAdministrators,andMedi-CalManagedCareHealthplansallrecognizedgeographyasabarrieringecngaccesstocare.Duringafocusgroupques7onaboutDME,oneproviderstated:

“…wedopickupalotofkidsthathavechronicinfec7onsinremotecoun7es,wedon’tsend[those]kidshomesome7mesbecausetheywon’tbeabletogetwhattheyneedoutthere—wecan’tfindanyoneouttherethatcandothedressingchangesorgethome

care.”

Access to Care: Administra/ve Issues

FromCCSAdministratorsSurvey:

•  Vastinequalitybetweenindependentanddependentcoun7esinregardto7melinessofauthoriza7onsandopeningcases

•  Improvedprocessing7meneededforcasesrequiringISCDreview

•  “Begercommunica7onfromISCDregardingeligibility,annualrenewals,andeligibilityfornewreferrals.Wearenotreceivingreturnedemails.”

•  “Expiringannualrenewalswithoutacontactpersontotalkto.Wehavehadthreerecentlythatexpiredwithoutcontactfromthestatethoughwesubmigeddocumentsthreemonthsaheadof7me.”

Access to Care: Workforce Issues

• “ThecurrentsupplyofpediatricsubspecialistsisinadequatetomeetthecurrentandfuturehealthneedsofchildreninCalifornia”–CaliforniaSpecialtyCareCoali7on

• 70%ofProvidersagreethattheMedi-Calprovidernetworkpresentschallengesintermsoftheavailabilityandcapacityofprimaryandspecialtycareproviders-ProviderSurvey

• Ofthe44respondentstotheCCSAdministratorssurvey,100%statedthattherearechallengesintheirprogram’scapacitytoperform,including:

◦  Difficultyhiringandretainingstaff(physicalandoccupa7onaltherapists,nursecasemanagers,publichealthnurses,clericalstaff)

◦  StatecapacitytoapproveSARsina7melyfashionfordependentcoun7es

◦  Uncertaintyifalloca7ontoCountyCCSprogramsforWCMcoun7eswillbeadequatetocoverminimumstaffingstandards

◦  Unan7cipatedandunfundedworkloadinWCMCountyCCSprograms

Access to Care: Workforce Issues (cont.)

“Thereisunan7cipated/unfundedworkloadremainingatthecoun7esthatwasnotplannedaspartofWCM,suchasAMRs[annualmedicalreviews]takingmuchlongerthantheState-allocated12minutes,sincetheHealthPlansarenotabletoprovidemedicalrecordsneededforAMR.Coun7esarealsochasingtheMedi-CalchurnasclientsfallonandoffofMedi-Cal.Inter-countyTransfersaresignificantlymorecomplex,withdifficultyobtainingrecordsfromtheHealthPlan.Complexi7esofstraddlingcommunica7onwiththeHealthPlans,useofSFTPforconstantPHIdatatransfer,weekly,monthly,quarterlymee7ngswiththeHealthPlanstotroubleshootandproblemsolveimplementa7onandtransi7onissues.”Impactsofaccessissues• 81%ofProvidersagreethatincreasingaccesstospecialtycare(81%)andprimarycare(73.3%)forchildrenwithCCScondi7onswillhelpdecreaseERvisitsandhospitaliza7on

Barriers to providing high quality care to CCS clients (0 = Not a barrier, 5 = significant barrier): Provider Survey

StatecapacitytoconductfacilityassessmentsLackofelectronicrecords

Other,ratehereanddescribebelowStatecapacitytoenforceCCSregula7ons

DelayinpaymentsforservicesprovidedtoCCSStatecapacitytopromptlyprocessapplica7onsforCCSreimbursementratesforcareofCCS-covered

Primarycarephysician’sabilitytoaccesselectronicDelayinauthoriza7onsfromCCS

HealthPlanrequirementstouseoutsidelabs/Amountanddifficultyofpaperworktocomplete

Medi-CalreimbursementratesforcareofDelayinauthoriza7onsfromPrivateHealthPlansAmountanddifficultyofpaperworktocompleteDelayinauthoriza7onsfromMedi-CalManaged

Communica7onchallengeswithsharingComplexityofcareandamountof7meneededto

WorkingwithMedi-CalManagedCareHealthAmountofresourcesneededtocoordinate

Transporta7onissues,e.g.,familiesgepngtoAmountofaccessibleandavailableresources(e.g.

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5

Communica/on between Providers: What We Heard

• “Ithinkweneedmuchbegercommunica7on—reallygreatifthekidisinclinic—notincliniccommunica7onisspogy.We’vehadissueswherepulmonologyisconcernedaboutscoliosisbutnottalkingtotheorthodocandthekidisscheduledforsurgeryandthepulmodocisn’tsigningoffonit.Thereareotherexampleswherewedon’tknowhowtointervene.Communica7onneedstobeimproved”–ProviderFocusGroup

FamilyFocusGroups:◦  Familiesfeelthatprovidersarelimitedintheirabilitytocommunicatewitheachotherandthisleavesparentsasthego-between.

◦  Themeofparentsbeingafraidtoshareinfowithproviders(e.g.,gepngprivatetherapyservices)sinceservicesmaybetakenaway

Communica/on with Others Serving CCS Popula/on: Provider Survey

35.5%

53.7%

22.7%

23.1%

50.9%

10.1%

10.5%

40.8%

39.4%

44.8%

52.1%

21.0%

32.5%

31.6%

17.8%

4.6%

20.4%

16.0%

13.8%

30.8%

34.5%

1.8%

1.1%

8.7%

6.5%

7.2%

22.5%

16.4%

4.1%

1.1%

3.5%

2.4%

7.2%

4.1%

7.0%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

PrimaryCareProviders

OtherSpecialtyCareProviders,includingSpecialCareCenters

RegionalCenters

Schools

CCSMedicalTherapyProgram(MTP)

MentalHealthProviders

Community-BasedOrganiza7ons

RegularlyCommunicate Some7mesCommunicateBasedonNeedsRarelyCommunicate NeverCommunicateDon’tKnow/NotSure

Barriers to Provider Communica/on: Provider Survey

27.6%

21.8%

13.9%

30.9%

24.1%

18.5%

31.6%

41.2%

49.1%

5.9%

6.5%

13.9%

4.0%

6.5%

4.6%

0% 10% 20% 30% 40% 50% 60%

TimeConstraints

LackofSharedElectronicMedicalRecords(EMR)

HealthInsurancePortabilityandAccountabilityAct(HIPAA)Concerns

[ConsentForms]

Don'tKnow/NotSure Never Some7mes Usually Always

Access to Mental and Behavioral Health Care: Provider Survey

8.4%

10.0%

8.6%

18.2%

15.0%

13.0%

18.9%

16.4%

18.0%

45.5%

29.3%

33.1%

0% 10% 20% 30% 40% 50%

CCSchildrenhaveadequateaccesstomentalandbehavioralhealthcare.

Non-CCSCYSHCNwithprivateinsurancehaveadequateaccesstomentaland

behavioralhealthcare.

CYSHCNwithMedi-CalManagedCareHealthPlanshaveadequateaccesstomentalandbehavioralhealthcare.

StronglyDisagree SomewhatDisagree SomewhatAgree StronglyAgree

51.1%

45.7%

64%

Mental Health and Social Determinants of Health (SDOH) Screening: Provider Survey

11.6%

15.9%

11.6%

15.9%

33.3%

39.1%

23.2%

29.0%

23.2%

23.2%

31.9%

29.0%

13.0%

5.8%

13.0%

8.7%

18.8%

15.9%

20.3%

17.4%

0% 10%20%30%40%50%60%70%80%90%100%

Useascreeningtooltoiden7fyneedsrelatedtotheSDOHforyourCCSpa7ents?

Useascreeningtooltoiden7fyneedsrelatedtomentalandbehavioralhealthfor

yourCCSpa7ents?

Useascreeningtooltoiden7fyneedsrelatedtoSDOHforyournon-CCSCYSHCN

pa7ents?

Useascreeningtooltoiden7fyneedsrelatedtomentalandbehavioralhealthfor

yournon-CCSCYSHCNpa7ents?

Always Usually Some7mes Never Don'tKnow/NotSure

*Note:Surveyresultsonlyincludenursesandphysicians

Reasons for Not Screening for Mental Health or SDOH


28.8%

11.9%

30.5%

32.2%

10.2%

15.3%

18.6%

20.3%

0% 5% 10% 15% 20% 25% 30% 35%

Notapplicable-CYSHCNarerou7nelyscreenedformentalandbehavioralhealth

Notawareofreferralsourcestobeabletoaddresstheseneeds

Notenough7metodoscreening

Notenoughstafftodoscreening

Noreimbursement

Notfamiliarwithscreeningtools

ScreeningtoolnotbuiltintoEMR

Notmyrole/job


Access to DME and Medical Supplies: What We Heard

•  “Someoftheratesaregoodandsomearebad,can’tgetavendortopayforcertainthingsunlesswepairthemalltogether.Forexample,ahelmetishardtogetfromavendorunlessthechildisgepngawheelchair,andawalker,thenthey’llthrowthehelmetin—theydon’twanttodoallthatpaperworkforjustahelmet.”–Providerfocusgroup

•  “ThereareanincreasingnumberofDMEitemsthatwecannolongerobtainduetothefactthattheMedi-Calreimbursementfortheitemislessthanthevendorscost.AlsoaproblemisthefactthatlargecompaniesarebuyingoutthesmallerDMEcompanies.TheselargercompanieshaveincreasedtheturnaroundforobtainingDMEdrama7cally.Thisisagreatfrustra7onforstaffandCCSMTUfamilies.”-Providerfocusgroup

•  “Mostoftheprogramsseemtobeworkingwell.TheguidelinesareconstantlychangingforCCS,andtheydon’tinformyou.Iwenttocollege,butevenformeitisconfusing.ThebiggestissuethatIhadisthatalotofthetreatmentsarenotconsistent—therewasaperiodof7mewhenmydaughterdidnotgetanytherapy(5yearsold,cerebralpalsy)andIwasgivenalloftheexcusesinthebook.Onethingisthattheyonlyallowyoutogetonenecessarymedicalequipmentandthenareonlygrantedonewhenthechildisac7velyabletouseit,forexampleagaittrainer.IhadtogettheregionalcenterinvolvedaskingformedicalequipmentthatCCSwouldnotgrantus(alightgatetrainer).Intherapy—theygiveherallkindsofequipmenttouseandthentheytelltheparentstoduplicateitathome,butCCSwon’tgivethemmorethanonepieceofequipment—howareparentssupposedtoduplicatetherapyathomesothatshedoesn’tlosewhatshehasgained.Singlemother,hasnobodyelsetohelp.Otherchildrenw/privateinsurancearesurpassingmydaughterandwelostayearbecauseofCCS.Alotofthe“prescrip7ons”theygranthavetobesignedoffbyanMDandtherearealwaysdelaysduetothis.Longwaitbetweenprescrip7onandadministra7on,MDssome7mesdon’treturnauthoriza7onsdon’tcarryover,havetogobacktothenewMDforanewauthoriza7on.”

Access to DME and Medical Supplies: What We Heard

ACCESS to DME- How ogen issues related to DME present problems for your pa/ents: Provider Survey

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

ToofewDMEproviderswillingtoworkwithMedi-Calduetolowreimbursementrates

ToofewDMEproviderswillingtoworkwithMedi-Calduetodelaysinpayment

DMEprovidersrefusingtoprovidecertainkindsofequipmentduetolowreimbursementratesforthat

ClientdischargesbeingdelayedduetoissuesinobtainingDME

HospitalsorfamilieshavingtopurchaseDMEsothatclientscanbedischargedina7melymanner

Clientsmissingschool/parentsmissingworkduetodelaysingepngorrepairingneededDME

DMEprovidersrefusingtorepairormaintainequipmentthattheywerenotauthorizedtoprovide

Don'tKnow/NotSure NeveraProblem RarelyaProblemOccasionallyaProblem FrequentlyaProblem

70%

63.9%

45.8%

59.9%

71.8%

Medical Home Administra7veProcessingTimes

UCSFFAMILYHEALTHOUTCOMESPROJECT 68Source: CMSNet 2014 & 2018

2DaysorLess 3daysto1wkWithin1week

Within2weeks

Referralun7lfirstSARauth.

2014 8.6%(4071) 30%(13999) 39% 65%

2018 5.9%(15406) 11.7%(30492) 17.6% 28.8%

SARrequesttofirstauth.

2014 40.2%(185816) 25%(117038) 65% 79%

2018 16.9%(18889) 17.6%(19590) 34.5% 51.5%

HHASARtoAuth.2014 40.6%(1205) 33%(983) 74% 86%

2018 25.1%(1198) 29.3%(1397) 54.4% 68.5%

WheelchairSARtoauth.

2014 37.6%(1074) 21%(604) 58% 73%

2018 25.9%(970) 18.9%(604) 44.8% 58.7%

MCHB Outcome #3: Insurance Coverage

FamiliesofCSHCNhaveadequateprivateand/orpublicinsurancetopayfortheservicestheyneed.

69

Adequacy of Insurance: NSCH 2016/17

26.6%

36.0%

73.4%

64.0%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0%

CA

US

InsuranceISadequateforchild'shealthneeds(CSHCN)

InsuranceisNOTadequateforchild'shealthneeds

Insurance Coverage: Administrator Survey

• “CreateanaidcodethatpendstheMedi-CalforCCSeligibleclientsratherthandroppingtheMedi-Califpendedsothatfolksdonotexperiencealapseincare”

• “StoptheCHURN[childrenfallingonandoffMedi-CalandCCS].Thisleadstopoorcasemanagementandfragmentedservices”

• “ImprovetheMedi-CalChurn,considerextendingtheCCSeligibilityto6months,notmonthly”

• “Require[Medi-CalManagedCarePlan]tokeeptheirchildrenfor30-60dayswhentheyfalloffof[Medi-CalManagedCarePlan]buts7llhavefeeforserviceMedi-Cal.”

• “Difficultywiththemanagedcarecoveringhealthcareneedswhilewai7ngforCCSeligibility”


Insurance Coverage: Family Survey

Childcoveredbyanyofthefollowingtypesofinsurance(check

allthatapply) %

Medi-Cal 90.9

Private 13.5

Donotknow 0.2

Uninsured 0.1

Doesyourchild’shealthinsuranceallowyourchildtoseethehealthcareproviders

thatyourchildneeds? % Always 74.5 Usually 18.6 Some7mes 4.2 Never 0.6 Notapplicable 1.2 Missing 0.7

Insurance Coverage: Family Survey

• Duringthelast12months,didyourchildneedanyservicesthattheirinsurancedidnotcover?Pleasecheckallthatapply:◦ 17.8%(609)checkedatleastoneservice

Service %

Communica7onaidsordevices 7.2

Dentalcheckup/teethcleaning 14.3

Durablemedicalequipment 20.0

Eyeglassesorvisioncare 17.9

Hearingaidsorhearingcare 5.4

Homehealthcare 3.6

Hospitaliza7on(in-pa7entstay) 4.1

Mental/behavioralhealthcare 5.1

Medica7ons 26.8

Otherdentalcare 12.3

Painmanagement 2.0

Physical/occupa7onaltherapy 11.7

Specialtycare 8.7

Speechtherapy 10.8

Substanceabusetreatment/counsel 0.2

Well-childcheck-up 4.6

X-rays 2.6

MCHB Outcome #4: Screening and Prevalence

Childrenarescreenedearlyandcon7nuouslyforspecialhealthcareneeds


High-Risk Infant Follow-Up Program (HRIF)

California’sHighRiskInfantFollow-up(HRIF)Program,runbyCCS,overseesoutpa7entfollow-upofinfantsrequiringaddi7onaldevelopmentalcareazerdischargefromtheNICUthroughlocalHRIFclinics.

HRIFclinicsprovidefollow-upcaretoallinfantsbornbefore32weeksofgesta7on,orwithabirthweightlessthanorequalto1500grams,aswellinfantswitharangeofneurologicand/orcardiovascularriskfactors.

◦  Infantswhohavespent7meintheNICUareozenathigherriskforbehavioral,neurological,developmental,orgrowthchallengeslaterinchildhood.

◦  HRIFclinicsensurethattheseinfantsgrowasexpectedazerdischargeandmeetdevelopmentalmilestones.

◦  HRIFclinicsprovidethreeormoreassessmentvisitswithCCS-paneledproviderswhofollowtheinfantoverthefirstthreeyearsoflifeandiden7fyexis7ngandnewissuesastheyarise.

HRIFisrelatedtheMCHBGoalofEarly&Con;nuousScreeningbecauseitismeanttoprovideearlyscreeninganddetec7onofaspecialhealthcareneedtoahighriskpopula7on.

HRIF: Data on Loss to Follow-Up • Tanget.al.(2018)surveyedhigh-riskinfantfollow-upprogramsinCalifornia,56(82%)respondedtothesurvey◦  Thefirstvisitno-showratebetween10and30%wases7matedby44%ofprogramswithhigherno-showratesforsubsequentvisits.

◦  Commonstrategiestoremindfamiliesofappointmentswerephonecallsandmailings.

◦  Mostprograms(54%)didnothaveastrategytohelpfamilieswholiveddistanttothehigh-riskinfantfollow-upclinic.

• Hintzet.al(2019)didastudytodeterminehowtopreventLosstoFollow-Up(LTFU),whichcanbedetrimentaltofamiliesandchildren,especiallyverylowbirthweight(VLBW)infants.Theyhavedeterminedthat:◦  Outofthe80%ofVLBWinfantsreferredtoHRIFin2010-2011,74%hadatleast1HIRFvisitw/in12months

◦  Iden7fiedreasonsforlosstofollow-upincluded:Parentrefused(6%),familymoved(5%),insuranceauthoriza7ondenied(3%),unabletocontact(14%),otherhighriskfollow-up(3%),otherreason(8%)

◦  BUTthemajority(48%)ofthereasonsforLTFUwereunknown

HRIF: Data on Loss to Follow-Up (cont.)

Hintzetal.(2019)alsofound:◦  Higherodds(morelikelytoagend)forfirstHRIFvisitagendancewasassociatedwith:◦  oldermaternalage◦  Lowerbirthweight◦  privateinsurance◦  historyofsevereintracranialhemorrhage◦  2parentsasprimarycaregivers◦  HRIFprogramvolume◦  Lowerbirthrates

◦  Lowerodds(lesslikelytoagend)forfirstHRIFvisitagendancewasassociatedwith:◦  maternalraceAfricanAmericanorblack◦  greaterdistancetoHRIFprogram

HRIF: Needs and Ongoing Efforts

Needsbasedonresearchfindings:◦  Iden7fyfamilychallengesinaccessandresourceriskfactorsduringinfanthospitaliza7onintheNICU

◦  Providefamiliesenhancededuca7onaboutbenefitsofHRIF◦  CreatecomprehensiveNICU-to-hometransi7onapproaches

HRIFprogramisworkingto:◦  Begercharacterizefamily&caregiverbarrierstoHRIFvisits◦  Begerunderstandwhatprogram-levelresourcesareneededandwhattheprocesschallengesare

◦  Iden7fyopportuni7esforinterven7onandstrategiesthatneedtobetailoredtoHRIFprogramsandregionalneeds

Screening of Medi-Cal Children

• Preven7veservicesincludeEarlyCon7nuousorDevelopmentalScreening

• “Anannualaverageof2.4millionchildrenwhowereenrolledinMedi-caloverthepastfiveyearshavenotreceivedallofthepreven7vehealthservicesthattheStatehascommigedtothem.”-Source:CaliforniaStateAuditReport2019

• Between2013and2018,anaverageof2.4millionchildreneachyearenrolledinMedi-Caldidnotreceiveallrequiredpreven7veservices,accordingtothefindings-Source:CaliforniaStateAuditReport2019

Developmental Screening: NSCH

31.10%

22.20%

68.90%

77.80%

46.90%

29.70%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

US California

%ofchildren,ages9through35months,whoreceivedadevelopmentalscreeningusingaparent-completedscreening

toolinthepastyear(16;17)

Goal:Con7nuousScreening

ParentCompleted

ParentdidNOTcomplete

ParentofCSHCNcompleted

ParentofCSHCNNOTcompleted

Well-Child Visits ProviderSurvey:Over95%ofprovidersfeelthattheannualwell-childvisitforCYSCHNisveryimportant(N=66)AreCYSHCNreceivingwell-childvisits?(N=70)◦  Yes,mostappeartobehavingthese

visits 50.0%◦  Yes,butonlysomeappeartobe

havingthesevisits 24.2%◦  No,itappearsthatmostarenot

havingthesevisits 9.1%◦  Idon’tknowwhethertheyarehaving

thesevisits 16.7%

Whoisprovidingthesevisits:(open-ended)◦  AlmostallreportedPrimaryCare

Providers

Duringthepast12months,howmany7mesdidyourchildreceiveawell-child

check-up,whichisageneralcheck-up,whentheywere

NOTsickorinjured?

%

0 8.8 1 16.8 2 15.8 3+ 15.0 Missing 10.2

*Note – reporting data only for physicians and nurses

FamilySurvey:

MCHB Outcomes #5: Organiza/on of Services

Community-basedservicesforchildrenandyouthwithspecialhealthcareneedsareorganizedsofamiliescanusethemeasily.


MCHB Outcomes #5: Organiza/on of Services

15.7% 17.9%

84.3% 82.1%

0%

20%

40%

60%

80%

100%

Na7onwide California

Percentofchildrenwithspecialhealthcareneeds(CSHCN),ages0through17,whoreceivecareinawell-

func7oningsystem(2016/17)

Receivecareinawell-func7oningsystemDonotreceivecareinawell-func7oningsystem

CAranked36thcomparedtootherstates

Organiza/on of Services: What We Heard •  “AbouthalfoftheCCSpa7entsareextremelysocioeconomicallychallengedwithparentsthatstruggleeitherwithfinances,language,orcomprehensionofthecondi7on.Simplethingssuchasgotolabandgetblooddrawn,makingappointments,followingmedica7oninstruc7onsarechallengingforthem.Manydonothavetransporta7ontocometoclinic.We'reluckythatourins7tu7onprovidescasemanagersthathelpsuswithpaperworkrelatedtocoverage,buttheycan'thelpthepostdischargeexecu7onbythefamilies.Havingsomeonefromthehealthplanthatknowsthecareplanandhelpthefamilyadheretoitwouldbeextremelyhelpful.Thepossibilityoftransportassistanceisalsoextremelyhelpful.”–CCSProviderSurvey

•  “Weneedtoknowwhatservicesandmedica7onsarecoveredbyCCSclearlyandbycountyastheformulariesaredifferent.Weneedtoknowwhichdiabetessuppliesarecoveredandwhichbrandsarecovered.Weneedthisinforma7oneasilyaccessibletoprovidersandpharmacistssothecorrectmedica7oncanbeprovided.Familieshavedelaysingepngprescrip7onsorglucoseteststripsandourstaffspendssignificantamountsof7mesor7ngthisout.Coun7eschangewhattheywillcoverandanditseemsprovidersarethelasttoknow.WewouldappreciatealistfromeachcountysenttoprovidersorupontheCCSwebsitelis7ngwhatiscoveredandchangestocoverage.”–CCSProviderSurvey

Organiza/on of Services: What We Heard

•  “My18yearoldgrandchild(Iamhisguardian/conservatorfor15+yearsandhavecaredforhimsincebirth)hasbeenreceivingCCSbenefitssincehewasaninfant.IhonestlycansayIdon'tknowwhatIwouldhavedonebackthenwithoutthem.HehasatwinwiththesamemusclediseaseandisalsoaCCSclient.Theirpar7culardiseaseisknownasoneofthemostunderdiagnoseddiseasesduetothecomplexityofsymptoms.Itisgene7cwitheachgenera7onpresen7ngmoresevereun7lfinallyababywiththemostsevereformisdiagnosed.WearesogratefultohaveourCCSmanagerwhounderstandsmygrandsons'needsandhelpsuskeepourteamofdoctorsthatcareforthem.Andnowwiththenewdxofleukemia,itisevenmoreimportantthaneverthatwekeepreceivingourauthoriza7onsina7melymanner.ItmeanssomuchtohaveaspecializedgroupatCCSthattrulyunderstandscomplexdiseasesandknowstheimportanceofkeepingontopofthekidsneeds.Wehaveneverhadadelayinacallbackorauthoriza7onever,andwhenyouhaveaseriouslyillchild,thatmeansalot.WearealsogratefultotheLucilePackardChildren’sHospitalandMedicaldoctorsthatacceptMedi-Cal/CCS.”–CCSFamilySurvey

Organiza/on of Services: What we heard

• “Mynursecasemanageralwaysreachesouttomeandtomywifewhatweneededtodo.Forexample,whotocall,andwhatstuffweneededsothatCCScanauthorizeservices.Mynursecasemanageralsokeptusupdatedofwhatisgoingonsoweknowwhattoexpect.”–CCSFamilySurvey

• “Alotofitisbegercommunica7on.Evensendingout,whatrightsareinCCS,understandingofhowprogramworks.Ididn'tevenknowhowmychildqualified.Itwasatrauma7c7mewhenIsignedthepaperworkandImust'vesigneditnotrealizing.I'msuresomeonetoldmebecauseIwascaughtupinlife.”–CCSFamilySurvey

Organiza/on of Services - WCM: What We Heard

• “OurHealthPlanalsosubcontractstransporta7on,pharmacy,andradiology,andthereisalotoffragmenta7onbecausethefamilyneedstocallthesedifferentcompaniesinordertoaccesstheservices.Wehearfromfamiliesthattheyneedtomakemul7plephonecalls—whereasinthepastwecouldmakesurethattheygetwhattheyneed.Notallfamiliesareequippedtodothis.”–CCSAdministratorFocusgroup

• “Theprovidersthatknewitbefore,knewaboutauthoriza7on.InMedi-CalManagedCareitisactuallyfragmentedandtheywantaseparateauthoriza7on—providersfeelliketheyhavetoaskforeverything.Whenwedoauthoriza7ons,theseauthoriza7onstendtoencompassthatdiagnosis—soitisabroaderauthoriza7onoffofaspecificdiagnosis.Now,withWholeChildModeltheyareaddingaddi7onalstepsandcomplica7ons.”-CCSAdministratorFocusgroup

• “Thereisnobodydoingoversight,we’veactuallybeentoldwhenweaskcasemanagementques7ons,wearetold‘well,that’snotyourbusiness.’Clientsdon’tknowwhotocallattheHealthPlan—theyhavetotelltheirstorytofourdifferentpeopleinfourdifferentdepartments.”-CCSAdministratorFocusgroup


Organiza/on of Services - WCM: What We Heard

• “Ineverhadaproblemwiththediapersbefore,theywouldcomeallofthe7meandon7meandthenwestartedtono7cethattheyweren’tshowingup.WhenJunecame,Icalledtofindoutandtheysaidthatsheneededtogetaprescrip7onfromthevendor.WhenIcalledthevendortheysaidthatduetothechangestheywerenotcontractedwith[healthplan],andthenIcalledCCSandtheysaidthatthevendorshouldbecontractedandexpectedmetocallandfigureoutwhotheyarecontractedwith.Thenfinally,Igotalistforthreeplacesin[countyname],andtheyallsaidwas“wedon’tknowwhytheykeepreferringyouhere,wedon’tofferthoseservices.”ThenIfinallycalledshieldandtheywereexplainingshedidn’tqualifyfordrugs.Ihadtogobacktotheoriginalvendortogetthelistofwhattheysentherinthepast,hadtogototheMDtogetanauthoriza7on.WhydoIhavetokeepaskingforsomethingthattheyknowmydaughterhasalife;meneedfor?”–CCS/CYSHCNFamilyFocusGroup


Organiza/on of Services -WCM: What We Heard

• “Itwasverygoodaboutthat[tellinguswhatcondi7onswereeligible],butitisn’tanymore.Thewholechildmodel—peoplearestrugglingbecausetheyareCCSeligible,butnotallowedtouseCCSfee-for-service.Halfofthemhaven’tevenreaditat[redactednameofhealthplan]andcannotinterpretit.Pregymuchdidn’ttellusanythingun7lithappened.ItisdifficultnowbecausewearereallyCCSclients,butwecan’tuseit.[Healthplan]iss7llfiguringouthowtofititintotheirsystem.”–CCS/CYSCHNFocusGroup


Health Plans: Family Survey

Doyouneedmoreinforma7onabout: %

CCS 26.1 Medi-Cal 23.5 PrivateInsurance 2.0 Donotknow 2.3 Mychildisnotinsured 0.1 Idonotneedmoreinforma7on 55.0

Doyouknowwhomtocalltogetanswersaboutyourchild’scareor

insurance(forexampleifservicesaredeniedandyouwanttoaskwhy)?

%

Yes 69.5 No 10.5 Notsure 9.2 Notapplicable 1.2 Missing 9.6

Doyouknowhowtofileagrievanceorcomplaintabout

yourchild’shealthcare?

%


IfyestoQ28,haveyoueverfiledacomplaint?

%


Interpreta/on Services: Family Survey

IsEnglishtheprimarylanguagespokeninyourhome? %

Yes 70.0No 29.5

Howozendoyouneedaninterpretertohelpyouspeakwithdoctorsandnurses? %

Always 39.8Usually 11.8Some7mes 18.3Never 8.7

Howozenareinterpreta7onservices

available?(forthosewhoalways,usuallyorsome7mesneedan

interpreter) %Always 69.1Usually 17.3Some7mes 11.3Never 0.8

Coordina/on of Services: Family Survey Howozenareyourchild’sservicescoordinatedinawaythatmakesthemeasytouse?

%

Always 53%Usually 29%Some7mes 14%Never 4%

Howozenisiteasytocoordinatetherapy(physicaltherapy,occupa7onaltherapy)foryourchildintheschoolsepng?

%

Always 49% Usually 21% Some7mes 10% Never 7% Donotknow 12%

Impact on Families: Family Survey

Howmanyhoursperweekdoyouorotherfamilymembersspendarrangingorcoordina7ngcare?

%

0to5 65.0 6to10 14.1 11to15 5.1 16to20 2.4 20+ 13.4

Howmanyhoursperweekdoyouorotherfamilymembersspendprovidingcareforyourchild’smedicalcondi7onathomeforyourchild?

%

0to10 50.8 10to20 10.4 20to30 6.8 30to40 4.1 40to50 3.6 50to60 2.2 60to70 2.1 70+ 20.0

Haveyouorotherfamilymembersevercutdownonhoursorhadtoleaveajobbecauseofyourchild’shealth?

%

Yes 54.0No 43.3Donotknow 2.6

Case Management/Care Planning: Family Survey Inaddi7ontoyourselfandyourfamily,whohelpstoarrangeorcoordinatecareforyourchild?(checkallthatapply)

%

NurseCaseManager 12.3 HealthPlan 8.6 RegionalCenter 15.3 SpecialCareClinic/Center 14.1 CountyCCSCaseManager 20.9 Childsschool 4.6 Nobodyhelps 34.5 DontKnow/NotSure 7.9

Duringthepast12months,haveyoufeltthatyoucouldhaveusedextrahelpgepng,sepnguporcoordina7ngyourchild’scareamongthedifferenthealthcareprovidersor

services?

%

Always 11.8 Usually 7.0 Some7mes 17.8 Never 43.1 Notapplicable 7.3 Missing 13.4

Hasahealthcareproviderorcasemanagerhelplinkedyouwithsupport(e.g.familysupportgroups,parent

mentors,onlinesupportgroups,etc.)?

%

Yes 32.8

No 30.5

Donotknow 26.1

Ifyoufeelthatmoresocialand/oremo7onalsupportwouldhelpyouoryourfamilycope,whatkindofsocialand/or

emo7onalsupportwouldyoulikeforyouoryourfamily?Pleasecheckallthatapply:

%

Onlineortelephonesupportgroup 18.2 Inpersonsupportgroup 22.8 Parentmentororparentpartner 11.2 NotApplicable–noaddi7onalsupportneeded

42.1

Family Need for other Services – Family survey

• 10.8%offamiliesneededatleastoneoftheservicesbelow.

Receivedcare(%)Always Usually Some Never

Respite Care 36.2 31.3 14.1 21.7 32.8Genetic Counseling 16.3 51.7 5.6 14.6 28.1Mental Health Care, Emotional Support or Counseling

37.5 37.6 12.7 24.9 24.9

Legal Issues 10.6 27.6 10.3 24.1 37.9Housing Issues 12.6 27.5 13.0 20.3 39.1Accessing Food Assistance and Other Government Benefits17.4 56.8 8.4 21.1 13.7Other 4.0 40.9 18.2 27.3 13.6

During the past 12 months was there any time when you or other family members

needed the following services and did not receive them?:

Ofthosewithanyneed,%

needingservice

Organiza/on of Services: CCS Standards and Enforcement

25.7%

5.51%

22.0%

29.2%

10.2%

21.0%

29.2%

10.2%

21.0%

7.6%

25.2%

13.3%

6.3%

33.9%

15.2%

0% 5% 10% 15% 20% 25% 30% 35% 40%

Regularfacilitysitevisitsareanimportantpartofmonitoringandenforcingregula7ons/Numbered

Legers.

ThestateCCSprogramhasadequatecapacity(i.e.staff,clinicalexper7se,

funding)toconductperiodicfacilitysitevisitstomonitorandenforceregula7ons/NumberedLegers.

Facilitysitevisitsareconductedbyamul7disciplinaryteamofstatestaffandconsultantswhoareexpertsintheir

fields.

StronglyDisagree SomewhatDisagree Neutral SomewhatAgree StronglyAgree

Organiza/on of Services: Standards and Enforcement

CCSAdministratorSurvey:Comprehensivecarecoordina7onandoversightfromStateofcarecoordina7on[forWCMHealthPlans]FullydefineandimplementCaseManagementbytheHealthPlansDefine,create,andimplementstandardsforMedicalHomes.AllCCSclientstohaveanappropriatemedicalhome.FinalizetheInter-CountyTransferNumberedlegerImprovingthetransferprocessbetweencoun7es-crea7ngastandardprotocolforallcoun7estobeonthesamepageProvidePDN(privatedutynurse)PolicyorNumberedleger

Extending CCS Eligibility: Provider Survey

44.8%

14.5%

40.7%

Yes No Don’tKnow/NotSure

0%10%20%30%40%50%

Should eligibility for certain CCS conditions (e.g. hemophilia or

cystic fibrosis) be extended to 65 years old, at which time Medicare

would be available?

N = 145

WhichCCScondi7onsshouldbeextendedto65yearsold?(ProviderSurvey,open-ended,N=68)Themesandquotes:•  Congenitallyacquiredcondi7onsthatarechronicandwilllastintoadulthood,e.g.,cerebralpalsy,musculardystrophy,spinabifida

•  “Allcongenitaldiseases.Toodifficultfindingadultproviderswhoarefamiliarwithchildhoodcondi7ons.Adultprovidersdonothavetheinfrastructuretocoordinatecare”

•  “Metabolic/gene7ccondi7onssuchasPKU,Fagyacidoxida7ondefects,ureacycledefect,etc...Therearenoadultphysicianstrainedinmetabolic/gene7cdisorders.”

Care Coordina/on: Survey Results

Whatdifferences,ifany,arethereinthecoordina7onofhealthcareforCCSversusnon-CCSCYSHCN?(ProviderSurvey,open-endedques7on)

Keythemesandquotes:

•  CCSpa7entshavegreaterneedandcomplexityofmedical,therapy,financial,andmentalhealthissues.

•  “Coordina7onofcareisbegerforCCSpa7ents,andsupportservicesfornon-CCSpa7entsareprovidedbymyteambutareNOTreimbursedbyanyone!Itbecomesessen7allyFREEcare(RN,SocWkr,e.g.),whichisnotsustainableforlargenumbersofpa7ents.”

•  “CCSpa7entsrequireanextralayerofpaperworkandcoordina7onthatcommercialpa7entsdon'thave.”

•  CCSCYSHCNreceivemorespecializedcasemanagement.

•  “CCSprovidessomecarecoordina7oncentrallywhichishelpful.Fragmentedresponsibility(CCSandhealthplan)leadstoaddi7onalworkinseekingauthoriza7ons,denials,etc.”

Care Coordina/on: Provider survey

WhoPaysforcoordina7on?(N=125) %

CCS 29.6Medi-CalManagedCareHealthPlan 12.4Privateinsurance 7.1Philanthropy 2.9

Noonepaysforit,wejustdoitbecauseitisneeded 13.6Don’tknow/NotSure 30.2Other(pleasespecify) 4.1

Howimportantisitforyou(oryourprac7ce)toprovidecare

coordina7onforCYSHCN?(N=127)%

VeryImportant 70.1

Important 11.8

SomewhatImportant 3.2

NotImportant 3.9

Don'tKnow/NotSure 11.0

Telehealth Survey Results

Barrierstoprovidingtelehealth:(open-ended,N=95)Themesandquotes:•  Reimbursementforstaffandresourcesneeded

•  Lackofpa7entaccesstoneededtechnology

•  Uptodateandsecure(HIPPACompliant)programs,portals,andelectronicdevices

•  “Very7meconsumingwhenusinganinterpreter”

•  “Youcan'tdoaphysicalexam”


40.9%

23.9%

16.9%

18.3%

Yes,Idoprovidetelehealth

Yes,Iwouldbewillingto

No,Idon'tprovide

Don’tKnow/NotSure

0% 5%10%15%20%25%30%35%40%45%

Do you currently provide telehealth services or would you be willing to provide telehealth services to CCS

clients?

Telehealth Survey Results

Whatstepsshouldbetakentoreducebarrierstoprovidingtelehealthservices?(open-ended,N=72)Themesandquotes:•  Improvingreimbursement•  Fundingforsecuretechnologyneededtoprovidetelehealth•  “Elimina7ngtherequirementthatthetelehealthservicesbeprovidedatahealthcarecenter.Wouldn'titbegreattoconducttelehealthvisitsusingapa7ent'shome???”

•  “Havingacityorcountybasedloca7onapa7entcouldgoforatelehealthvisitiftheydonothaveaccesstotheappropriateequipmentorreliableinternetconnec7on”

•  “EncouragingALLfamiliestosignupforMyChartatthe7meofallnewappointmentsandatthenextavailableappointmentwhentheyhaven'tsignedupyet.”

•  “Getuptodatephonenumbersateveryencounter”

Medi-Cal Provider Network: Provider Survey

34.3%

35.5%

12.1%

1.8%

4.8% 11.5%

TheMedi-Calprovidernetworkpresentschallengesintermsoftheavailabilityandcapacityofprimaryandspecialtycare

providers.

StronglyAgree SomewhatAgree Neutral

SomewhatDisagree StronglyDisagree Don’tKnow/NotSure

69.8%ofProvidersagree

MCHB Core Outcome #6: Transi/on to Adulthood

Youthwithspecialhealthcareneedsreceivetheservicesnecessarytomaketransi7onstoallaspectsofadultlife,includingadulthealthcare,work,andindependence.


Transi/on to Adulthood: What We Heard

ProviderFocusGroups:

• VeryhardtofindaprovidertoseeCCSclientsastheyageout,especiallywithMedi-Calinsurance

• Lackoftransi7onplanning• Lackofadultspecialistswithexper7seincondi7onsorigina7nginchildhood

FamilyFocusGroups:◦  Manyfamiliesinfocusgroupsdidnothavechildrenthatwereattheageoftransi7onyet;iftheywereabove14,mosthadn’tbeenspokentoaboutit,butmanywereconcernedwhatitwouldmeanfortheirCYSHCN

◦  Someparentsjusthandledthetransi7onthemselves,somewiththehelpofcountycasemanagers



• “TheotherissuethatwefacedisthatPCPsinthecommunitywereafraidtotakeoncomplexkidsasadults.”–CCSAdministratorsfocusgroup

• “Wearetryingtopartnerwithprovidersinoutlyingcoun7esthatmayonlyseeoneHIVtransi7onspecialhealthcareneedskid,andtheymayonlycallthemonceandiftheydon’tshowup,theysaythatis‘toobad’becausetheyareadultsandtheycantakecareofthemselves.We’vehadseveralpa7entsdieinthelasttenyearsbecauseofthis,becausetheyhavehad10-12regimensintheirlife7meandtheMDsdon’thavethecapacityorthesupportgroupstodealwiththe‘bornwithHIV’popula7on,theydon’tfitintothebehavioralhealthsupportgroupsforthis.”–CCSProviderFocusGroup

• “Forpediatricandadultworlditisdayandnight.Weno7cedwhentheytransi7onitishardtofindaproviderthatunderstandsthecomplexi7esoftheirdisease,wehavealotofkidsbouncingbackandaskingtobeseenbyusazertransi7on.Needasmoothertransi7on.”



FamilyFocusGroupParent:

“Forus,itwentsmooth.Wewerenotabletofindanadultproviderthough;IpickupwhereMedi-Calleavesoff.IfoundthePCPforher,thepediatriciangavethreerecommenda7onsandnoneofthemwouldtakeherbecauseofherneed.Theequipmentthattheygaveusazertransi7onwasgoodqualityenoughandwehaven’t

hadaneedforDME.ThiswasbeforeWholeChildModel,ourcasemanagermadesurethatwehadevery

bitofequipmentweneededwhensheagedout.”


Providerssuggested…•  Pediatricproviders/specialistsseeCYSHCNintoadulthood

•  Telehealth

• MorefamilyengagementfromCCS

• Morecollabora7on&partnershipbetweenpediatric&adultproviders

•  Providersneedtostartdiscussingtransi7onatage14

• Outsidefundingforspecializedtransi7onprograms(whichsomehavealready)

“Wehavesicklecell[transi7on]bootcampswithdonatedmoney.Westartkidsat13.Theseexistalloverthecountry;Idon’tknowhowsuccessfultheyare.”

Transi/on to Adulthood: Family Survey

Havedoctorsorotherhealthcareproviderstalkedwithyourchildabouthowtheir

healthcareneedswillbemetwhenyourchildturns21?

%

Yes 36.7 No 48.5 Donotknow 11.5 Missing 3.2

Isyourchild14yearsorolder? %Yes 27.1 No 62.5 Missing 10.4

Ifyes,wereyouabletofindanadultdoctororprovider?

%

Yes 59.4No 12.1Donotknow 26.6Missing 1.9

Haveanyofthefollowingpeopleororganiza7onshelpedyourchildfindanadultmedical

provider?Checkallthatapply:

%

CCS 22.2 HealthPlan 13.8 OurPediatrician 13.5 Noneoftheabove 47.2

Strategies to improve Transi/on: Provider Survey

86.9%

86.1%

86.1%

7.6%

8.3%

10.4%

2.1%

0.7%

0.0%

0.0%

0.0%

0.0%

3.5%

4.9%

3.5%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%

Amul7disciplinarytransi7onteamincludingaLicensedClinicalSocialWorker,Nurse,CaseManager,SpecialtyCareProvider,PrimaryCarePhysician,MedicalTherapy

Assistanceinfindinganewprimarycareprovider

Assistanceinfindinganewspecialtycareprovider

YouthwhohaveagedoutofCCSandhaveMedi-Calwouldbenefitfromhaving:

Don'tKnow/NotSure StronglyDisagree SomewhatDisagree

SomewhatAgree StronglyAgree

Poten/al Priori/es


Families are Partners: Poten/al Priori/es •  Careneedstobemorepa7ent-centered,drivenbypa7entexperiences

•  Increasestaffthatareresponsibleforcarecoordina7on•  Increasecasemanagementstaff•  Createprotocolsorregula7onsmanda7ngthatfamiliesareinvolvedindecisionmakingabouttheirchild

•  Createmoreopportuni7esforfamiliestoreceivecommunica7onandeduca7onfromMedi-CalManagedCare

•  CreatenewmaterialstoeducateandcommunicatetheCCSsystemtofamiliesinlanguagethatwillmakesensetothem,withinputfromfamiliesandCYSHCN

•  IncreaseCCSsocialworkerstafftoaddressthesocialneedsoffamilies•  Improvewebsitetobeeasierforfamiliestonavigate• Getridof“milestones”asameasureofachild’sdevelopment,itisn’tinclusiveofallDXs


Medical Home: Possible Priori/es •  Increasesupport(funding)forprimarycareforCYSHCN,specificallyforMedicalHomeprograms

•  DevelopMedicalHomecriteriaandstandardstopromoteclarityandunderstandingacrossorganiza7ons

•  Provideaddi7onalprovidereduca7ononhowtoworkwithCYSHCN•  IncreasenumberofCCSprovidersANDmentalhealthprovidersthatcanserveCYSHCNbyprovidingaddi7onalfundingandincen7ves(i.e.loanforgiveness)

•  IntegratementalandbehavioralhealthprogramstoCCSservicesavailabletoCYSHCNANDtheirfamilies,iftheyalreadyexist,increasethemviafunding

•  ClarifytheroleofMTUsbothfortradi7onalCCSandWholeChildModelcoun7es

•  AllowWCMfamiliestos7llseeCCS-PaneledprovidersfromoutsideoftheHealthPlans

•  EnsurethatfamiliesinWCMcoun7esarebeingreferredtoMTUs


Medical Home: Possible Priori/es (cont.) •  DevelopprotocolstoensurethatfamiliesareabletoduplicatePTathome

•  Re-evaluatetheprocessforDMEauthoriza7onsothatvendorsstopfavoringprivatelyinsuredindividuals

•  Incorporateprotocolsorregula7onsthataddressthesocialdeterminantsofhealthandadversechildhoodexperienceintotheCCSprogram

•  Returncasemanagementtothewaythatitwasundertradi7onalCCS(evenifHealthPlansareimplemen7ngit)

•  Financiallyincen7vizeins7tu7onsandprac7cestohavesocialservices

•  Developprotocolsorregula7onsforscreeningCYSHCNANDtheirfamiliesformentalandbehavioralhealthissues

•  DetermineifWCMchildrenarereceivingthesamelevelofbenefitsastradi7onalCCSchildren,andifnot,findawaytoprovidethesamelevelofcare

Medical Home: Possible Priori/es (con.t)

• Developregula7onsfortelehealthsothatitcanstarttobemoreavailabletoCYSHCNandtheirfamilies

• Streamlineprocesssoproviderscanseeifmedica7onorsupplyiscoveredbyCCS(similartowhatisdoneforprivateinsuranceplans)

•  ImprovetechnologicalresourceslikeeSARS,Pa7entPortalandProviderPortal,UpdateMTUonlineProgramandmakewebbasedandhostedbystatesoalldocumenta7onforCCSMTPclientscanbeuniversalallowingsmothertransferorcasesbetweencoun7es

• DevelopaprocessforimprovedelectronicrecordsharingamongCCSproviders


Early and Con/nuous Screening: Poten/al Priori/es

• MandatethatallCYSHCNandfamilieswillbescreenedandappropriatelyreferredtomentalhealthservices

• Reducelosstofollow-upforinfants/childrenreferredtotheHighRiskInfantFollow-upProgram(HRIF)

• EnsureCCSchildrenarereceivingyearlywell-childvisitsanddevelopmentalscreening

• Improveproac7veiden7fica7onofcasesforMTUservices

• ImproveCCSreferralspar7cularlyinWholeChildModelcoun7es

Insurance Coverage: Possible Priori/es •  ExtendCCScoveragepastage21•  ExpandmedicalcriteriaorchangeittobemoreinclusiveofmoreCYSHCNcondi7ons(doesnotaddressemergentcondi7onsthatdon’tqualify)

•  IncreasereimbursementratesforMedi-Calproviders

•  IncreasereimbursementratesforvendorsthatprovideDMEtoCCSCYSHCN

•  EnsurethatMedi-Calcoverscareun7lCCSeligibilityisdetermined• Medi-CalManagedCareHealthPlansneedtoallowsecondarydiagnosesinordertomi7gatedelaysincare

•  Financialcriteriaistoolow,itneedstobeincreased,ideallywithconsidera7onofloca7onandfamilysize.

•  Increasefundingforaddressingsocialneeds


Transi/on to Adulthood: Poten/al Priori/es

• Bolsterandimprovetransi7onresources

• IncreaseCCSsocialworkerstafftoaddresstransi7ontoadultcare

• DevelopaplantofindadultprovidersthatworkwithSHCNpa7entssothattheycanbeusedaresourceduringtransi7on

• ExtendCCSbeyond21• Transi7onprepara7onwithotherCYSHCNshouldbebuiltintospecialtycare


Organiza/on of Services: Poten/al Priori/es

• MandatethatallCYSHCNandfamilieswillbescreenedandappropriatelyreferredtomentalhealthservices

• Reducelosstofollow-upforinfants/childrenreferredtotheHighRiskInfantFollow-upProgram(HRIF)

• EnsureCCSchildrenarereceivingyearlywell-childvisits

• Improveproac7veiden7fica7onofcasesforMTUservices

• ImproveCCSreferralspar7cularlyinWholeChildModelcoun7es


Breakout Group: Assign Task Instruc/ons

•  Selectrecordertoenterinfointothelaptop

•  Selectrecordertowriteonposterpaper•  Selectpresentertoreportbackforthegroup


Breakout Groups: Mission

• Reviewdrazlistofproblems/issuesand◦ Addproblems/issuesifmissing◦ Deleteproblems/issuesifredundant,ornotneeded◦ Rewordlistedproblems/issuesintopriori7es/goals

GOAL:Manageablelistofpriori7esforstakeholderstorank


Next Steps: Ranking/Scoring Priori/es

• Listofpriori7eswillbeenteredintoonlinesurveyorStakeholderswillbeemailedPriori7za7onspreadsheettocomplete

•  Stakeholderswillrateeachpriorityusingthe6priori7za7oncriteriadevelopedwithStakeholderworkgroup

•  Criterionweightswillbeapplied,usingtheweightthemostStakeholdersselectedforeachcriteria

•  Finalscoresforlistofpriori7eswillbesharedwithStakeholders

•  DHCS/ISCDwillmakethefinaldetermina7onofthepriori7estobeaddressed

Next Steps: Developing Ac/on Plans

• Addi7onalanalysesofdatafortoppriorityareas• Inclusionandsharingofaddi7onalrelevantdata• Con7nuedinvolvementofstakeholdersandstateandlocalCCSstaffinthedevelopmentofac7onplans

• Establishperformancemeasurestoevaluateimplementa7onofac7onplans


References •  CaliforniaSpecialtyCareCoali7onSurvey,2019

•  CaliforniaStateAuditor(2019).MillionsofChildreninMedi-CalAreNotReceivingPreventa#veHealthServices.CaliforniaStateAuditorReport2018-111.hgps://www.auditor.ca.gov/pdfs/reports/2018-111.pdf

•  ChildandAdolescentHealthMeasurementIni7a7ve.2016-2017Na7onalSurveyofChildren’sHealth(NSCH)dataquery.DataResourceCenterforChildandAdolescentHealthsupportedbyCoopera7veAgreementU59MC27866fromtheU.S.DepartmentofHealthandHumanServices,HealthResourcesandServicesAdministra7on’sMaternalandChildHealthBureau(HRSAMCHB).Retrieved[mm/dd/yy]fromwww.childhealthdata.org.

•  HealthResourcesandServicesAdministra7on(HRSA),MaternalandChildHealthBureau(MCHB).ChildrenwithSpecialHealthCareNeeds.hgps://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs

•  Hintz,S.R.,Gould,J.B.,Benneg,M.V.,Lu,T.,Gray,E.E.,Jocson,M.A.,...&Lee,H.C.(2019).FactorsAssociatedwithSuccessfulFirstHigh-RiskInfantClinicVisitforVeryLowBirthWeightInfantsinCalifornia.TheJournalofpediatrics.

•  Tang,B.,Lee,H.C.,Gray,E.E.,Gould,J.B.&Hintz,S.R.(2019).Programma7candAdministra7veBarrierstoHigh-RiskInfantFollow-UpCare.AmericanJournalofPerinatology.

Thank you for your par/cipa/on!


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