Thehonorable Karene.Spilka,Chairsenatecommitteeonwaysandmeansstatehouse,Room212

ReportonAging

withIntellectual

DisabilityInitiatives

September2016

September12,2016

TheHonorable KarenE.Spilka,ChairSenateCommitteeonWaysandMeansStateHouse,Room212

Boston,MA02133

TheHonorableBrianS.Dempsey,ChairHouseCommitteeonWaysandMeansStateHouse,Room243

Boston,MA02133

KristenLepore,Secretary

ExecutiveOfficeforAdministrationFinance

StateHouse,Room373

BostonMA,02133

DearChairs:

TheDepartmentofDevelopmentalServicesrespectfully submitsthisreportinresponsetolanguagecontainedintheFY17budget.Line-item5920-3025mandatesthesubmissionofthisreporttotheExecutiveOfficeforAdministrationandFinanceandtheHouseandSenateCommitteeonWaysandMeanson"initiativestoaddresstheneedsofindividualswithdevelopmentaldisabilitieswhoareagingincluding,butnotlimitedto,individualswithDownsyndromeandAlzheimer'sdisease,throughtheidentificationofbestpracticesforservicesforsuchindividuals,including:(a)medicalcarecoordinationmodelsthataddressconditionscommontoindividualswithdevelopmentaldisabilitieswhoareaging;(b)theprovisionoftrainingfordirectcareandotherstaffintheidentificationofdementiaorotherage-related

conditions;and(c)thecollectionofdataregarding theeffectivenessoftheinitiativesincludedin

thisitem."

Legislativelanguagerequiredthatthereportinclude"thestatusoftheseinitiativesincluding,butnotbelimitedto:(i)thenumberofparticipantsservedbyeachinitiative;(ii)theparticipantoutcomes,includingimpactsonthephysicalandcognitivehealthofparticipants;(iii)thecostofeachinitiativeandcostperparticipant;(iv)theimplementationplansfortheseinitiativesinfiscalyear2017andfiscalyear2018;and(v)recommendationsforenhancingthecareofindividualswithdevelopmentaldisabilitieswhoareaging."

Perthereportingmandate,theinformationrequestedisprovidedbelowforyourreview.

Overviewofinitiatives

Beginninginthespringof20·15,DDSconvenedaworkgrouptodeveloprecommendationstoaddresstheneedsofindividualswithintellectual/developmentaldisabilitieswhoareaging.Basedonidentifiedneeds,DDSfocusedtheirattentiononthreemainareas:

1.HealthyAgingandClinicalResources

2.EndofLifeCare,SupportandPlanning

3.CommunityandWork/RetirementActivities

Basedonrecommendations fromtheAgingwithIDWorkgroupmembers,severalinitiativeswereimplementedinFY2015toaddresstheabovelistedareasofconcern. Theseinitiatives

were:

a. Consultants(ShedlackandWilliams)
b. NationalTaskGroup onIDandDementiaCarePracticesTraining
c. Webinardevelopment
d. DDSEndofLifepolicy
e. 5wishes
f.Memory CafeinformationaltrainingandMemoryCafeRFRQ&A
g. MemoryCafeRFRimplementation

I.Thetotalnumberofparticipantsservedbyeachinitiative

a. ClinicalConsultation

•RondaWilliams,RPH,PhD,aclinicalpsycho-pharmacologistwhoconsultswithDDS,nowalsoprovidesconsultationswithAreaOfficenursesonspecificcasesinwhichmedicationsmaybeimpactingindividualswithage-relatedissues.

)1consultationprovidedinthefinal4mos.ofFY16

•Dr.KarenShedlack,apsychiatrist,isnowcontractedtoprovideclinicalconsultations toindividualswhomaybeexperiencingpsychiatricissuesrelatedtoaging.

)9consultationsprovidedinthelast4mos.ofFY16b. NationalTaskGrouponIDandDementiaCarePracticesTraining

•3daytrainingconductedbyNationalTaskGroup(NTG)onIntellectualDisabilitiesandDementiaCarrePracticestoprepareproviderandDDSClinicianstocareforandsupportindividualswithID whoaredealingwithdementiaandtheircaretakersinordertoprovidein-stateTrainersasanongoingresourcetoprovidersandotherclinicians.

)69overallattendees

)26attendeescompletedTrain-the-TrainertobecomeMasterTrainersc. Webinardevelopment

•Creationofan"AgingwithID"linkprominentlydisplayedonDDShomepage.(

•Creationof10educationalwebinarsinprocessorawaitingfinalapproval.WebinarswillbepostedontheDDShomepage.

•Agingand1/DD:GeneralphysicalandpsychologicalagerelatedchangesinIDD:Health,Behavior,Supportneedsaspersonages

•MemoryCafe:WhatisitandhowdoIgetonestarted?

•DDSPolicy-EndofLifePolicy:IntroductiontotherevisedLifeSustaining

TreatmentPolicy-toberenamed"EndofLifePolicy".

•WhatisaMOLSTform?InformationalandinstructionalwebinaronthepurposeofaMOLSTformandtheprocesstobefollowedtocompleteoneforanindividualwithID.

•5Wishes:Introductiontoandinstructionsonhowtousethe5Wishesdocumentforendoflifeplanning.

•Guardianship:Legalrights,authorityandresponsibilitiesofguardianshipasitrelatestoendoflifeplanning

•EndofLifePlanning:FAQs;definitions(DNR,DNI,HealthcareAgent,etc.),typesofguardianship

•Accessing/providingcommunity servicesasindividualswithIDage:Thingstoconsider

•ADRC(AgingDisability ResourceConsortium):OverviewofservicesprovidedbyADRCandhowtoaccess

•EndofLife: CulturalReligiousconcerns:Howtoprepareforthecare

ofindividualswithIDattheendoflifeasitrelatestotheirheritageorreligious beliefs.

)Webinarviewsarependingcompletionofwebinarsd. DDSEndofLifePolicy

•Revised

)Distributionispendinge. 5WishesDocuments

•Bookletspurchased anddistributedtoAreaOfficesforuseinendoflifeplanningwithindividuals

)2000booklets

f.MemoryCafeinformationaltrainingandMemoryCafeRFRQ&A

•AMemoryCafeisaregularly-scheduledtimeandplaceforindividualswithmemoryissuesANDtheircarepartners(bothinformalandformalcaregivers)tomeettogetherforsocialization,fellowship,community-buildingandinformation.DDSprovidedanoverviewtraininginadvanceoftheRFRrelease

)5trainingsprovidedstatewide

)115peopleattendedg. Memory CafeRFRimplementation

•TheRFRprovidedforinitialfundingforMemoryCafes,specificallythedevelopment ofintegratedMemory CafesthatincludeindividualsservedbyDDSanditsprovidersaswellasthebroadercommunity.

)31proposalsreceived

)13MemoryCafesfunded(SeeAttachment#1)

)SinceApril1,2016,atleast.337guestshaveattendedamemorycafefundedbyDDS.Guestsincludedindividualsagingwith1/DDandothersfromthegeneralpublicwithmemoryissuesandtheircarepartners

II.The participant outcomes,including impacts on the physical and cognitive health ofparticipants

a. ClinicalConsultation

•TheconsultationwithpharmacologistRondaWilliamsclarifiedwhichmedicationwasmostlikelycausingasignificantsideeffectinoneindividual,whichresultedintheprescribingpractitionerreducingandthendiscontinuingthemedication.

•TheclinicalreviewsbyDr.KarenShedlackresultedinconfirmationorclarificationofdiagnosisforpresentingproblems,andidentificationofappropriatemedicationregimens,includingmedicationreductionanddiscontinuationofmedications thatpresentsideeffectsasthepersonages.Feedbackwasprovidedtotheprescribing practitioners.Theconsultsprovidedinsightintorationale forchangesinbehavior,leveloffunctionorcognitionandguidanceincreationofatreatmentplan.Referralstospecialiststoaddressparticularconcernswerealsoinitiatedandstandingdiagnoseswereconfirmedorquestioned.Finaloutcomesfortheseinterventionsarestillpending.

b. NationalTaskGrouponIDandDementia CarePracticesTraining

•Evaluationispending.

•PlanningisunderwayforFY17StatewidetrainingsforproviderstaffonDementia

FriendlyCareforpeopleagingwithIDbynewNTGStateMastertrainersc. Webinardevelopment

•Evaluationispending.d. DDSEndofLifePolicy

•Distributionispending.e. 5WishesDocuments

•AreaOfficeNursesutilizeandencourageuseofthe5Wishesdocumentwithindividualstoguidediscussions regardingtheirendoflifewisheswiththeirguardiansorhealthcareagentssothereisaclearunderstanding ofwhattheirwishesanddesiresmaybe.WhilethisdocumenthasjustrecentlybeenprovidedtotheAreaOffices,itisourhopethattheresultsoftheirusewillclarifyandstrengthentheunderstanding betweenthepersonandtheirhealthcareagentaboutwhatmedicalinterventions andcaretheymaywantintheirfinaldays.

f.MemoryCafeinformationaltraining andMemoryCafeRFRQ&A

•MemoryCafetrainingevaluationsshowedthattheywereveryeffectiveandwell-received. 99%ofattendeesagreedtheyhadlearnedkeyelementsofamemorycafe.94%agreedthatthetraininghadprovidedrelevantinformationforthecreationofaninclusivememory cafeundertheRFRand94%agreedthattheyhadmadeprogressinplanningthecafe.

g. MemoryCafeRFRimplementation

•Mostcafesholdsessionsonamonthlybasis

•Onecafeholdsweeklysessions

•Additionalevaluationactivitiesareongoing(seeAttachment#2)

Ill.Thecostofeachinitiativeandcostperparticipant

FY16SpecialFundingBreakdown:

Consultants(ShedlackandWilliams) / $15,187.50
NationalTaskGrouponIDandDementiaCarePractices 3day
Training Scholarships / $17,551.00
Webinardevelopment (UniversityofMassachusettsMedicalSchool) / $50,000.00
EndofLifepolicyrevisions / N/A
5wishes / N/A
MemoryCafeinformationaltrainingandMemoryCafeRFRQ&A(JewishFamilyandChildren'sService) / $3,373.62
MemoryCafeRFRimplementation(13funded) / $151,239.18
Total / $237,351.30

FY16SpecialFundingInitiativeParticipants

Note: Numbersincludeindividualswhohadaconsultation,weretrained,orwereguestsatamemorycafe;thisdoesnotincludewebinarviews. Gi.venthatDDSandproviderstaffweretrainedrelatedtodementiaandIDaswellasMemoryCafeactivities,manymoreindividuals willbereachedbyinitiatives,buttheexactnumberisunknown.

Consultants(ShedlackandWilliams) / 10
NationalTaskGrouponIDandDementiaCarePractices 3day
Training Scholarships / 95
Webinardevelopment(UniversityofMassachusettsMedicalSchool) / pending
EndofLifepolicyrevisions / N/A
5wishes / 2000booklets
MemoryCafeinformationaltrainingandMemory CafeRFRQ&A(JewishFamilyandChildren'sService) / 115
MemoryCafeRFRimplementation(13funded) / 337

IV.Theimplementationplansfortheseinitiativesinfiscalyear2017andfiscalyear2018

FY17PlannedActivities

BuildingontheactivitiesandsuccessesofFY2016,DDSwillbeimplementingthefollowing:

•Continuationofclinicalconsultationresources

•Additional,maintenancefundingfor13memorycafes

•Fundpilotforcommunity-baseddayservicesinnovationforagingpopulation

•ReleaserevisedEndofLifepolicy

•Statewidetrainings forproviderstaffonDementiaFriendlyCareforpeopleaging

withIDbynewNTGStateMastertrainers

•Seek funds to support services of Gerontology and DDNurse Practitioner toprovide follow up support and services for providers and staff for individualsseeninDr.JulieMoran'sagerelateddiagnosticclinicatTewksburyHospital

•Seekfundstosupportadditionalstartupmemorycafes

FY17PlannedFundingBreakdown

Dr.KarenShedlack(psychiatristconsultant) / $43,000
RondaWilliams(clinicalpsycho-pharmacologistconsultant) / $4,500
Memory Cafes Maintenance funding forexisting cafes:$4,000 per
cafe(x13cafes) / $52,000
Community-based activitiesproject(RFRinthefall): / $50,000
Total / $149,500

V.Recommendationsforenhancingthecareofindividualswithdevelopmentaldisabilitieswhoareaging

1. RecommendationsinvolveimplementingallFY17Plannedactivitiesnotedabove.

2. Ofparticularnote,DDShasalreadymovedforwardonthepilotforcommunity-based

dayservicesinnovationforagingpopulation

•RFIreleased-22responseswithrecommendations toenhancecommunity­

basedsupports

•Currentlyunderreview

•RFRbeingpreparedforpilotprograminFY17

3.Inaddition,DDSandtheExecutiveOfficeofElderAffairshavecreatedopportunitiesforenhancedinter-agencycoordination

•DDSisnowontheAdvisoryBoardforDementiaFriendlyMassachusettslnitiative/ADSSPgrant.

•PlanstopresentIDspecificagingissuestoADRCandElderservicesstaffandproviders

•MemoryCafefundingawardedtoElderServicesagenciesandCouncilsonAging.Collaborationbetweencouncilsonagingandothermemorycafeawardeesalsoencouraged.

•CreationofeducationalwebinarwithADRCtoexplainservicesavailablethroughADRCandareaswherecollaborationbetweenagenciescouldenhanceservicesforIDpopulation.

Sincerely,

""';J}-.A''

ElinM.Howe

Commissioner

Attachment#1

OrganizationsAwardedStartupFundingforIntegratedMemoryCafethroughRFR

1. BerkshireFamilyIndividualResources

2. CambridgeFamilyandChildren'sService

3. ConchShellCounseling

4. DivisionofAndoverElderServices

5. Martha'sVineyardCenterforLiving

6. MaryMacMissions

7. MiddleboroughCouncilonAging-TownofMiddleborough

8. NewEnglandVillage

9. People,Incorporated

10.RoadToResponsibility

11.SunshineVillage

12.TheArcofBristolCounty

13.UnitedCerebralPalsyAssociationofMetroBoston

Attachment #2

MemoryCafeEvaluation

OnlineSurveyandFocusGroupwithMemoryCafeDirectors

•Between1and6staffmembershelpedorganizeandruntheMemoryCafes.

•AlmostallCafeshadvolunteerstohelpwiththeMemoryCafe.

•MusicandartactivitieswerehostedbyMemoryCafes.Otheractivitiesincludedaccessiblegardens,flowerarranging,magician,photobooth/scrapbooking,pettherapy,chairyoga,andgiftofaletter(engaging individualsinhandwritingletterstolovedones).

•MemoryCafesadvertiseprimarilyviaflyersandnewsletters.

•ImportantaspectsoftheMemoryCafesforindividuals(basedonstaffobservation):

oGueststreatedwithrespect

oFocusesonabilities,notondisabilitiesordiagnosisoHaswelcomingvolunteers/staff

oIsaccessible

•Challenges:

oThecultureofelderservicesanddisabilityservicesaredifferent.oFundingisnecessarytocontinuetoholdinclusivecafes.

oItcanbehardtofindDDSstaffresourcestobringindividualstocafeandstaywiththem.

•Whatworked:

oOfferedlunch

oProvidedtransportation

oSignedguestbook(asawaytocapturefeedback)

oHelddisabilityawarenesstrainingtobreakdownbarriersbetweenelderservicesanddisabilityservices

oFacilitationtohelpwithintegration

Sometestimonials:

•Aspontaneousemailfromoneoftheparticipantsstated:"MemoryCafewasahit!"

•Avolunteerquote:"Thepresenterwassointeresting!"

•ThepersonwhoschedulesthespacesaidthisabouttheCafe:"Itisreallygreatthatthisisbeingprovidedforpeopleinthecommunity."

•"IwanttoletyouknowaboutanamazingweeklyeventfundedbyDDS,thatbeingthe

'memorycafe'forfolkswithspecialneeds,dementiaetc.[It]isdoingareallygreatjobwiththiseveryweekandIamvolunteeringbyplayingmusicaspartofthisweeklyeventwith6-7greatpeopleincludingtworetireddocs,anurseandothercaretakers. Ireallythinkthiswouldbeareal"feelgood"moment...toseethechangesyouhavemadeinpeople'slives. Peoplecomealivewhentheyhearusplaytheirfavoritesandtheyfollowalongandsingwithusonalltheoldstandards(whicharen'tsooldasmanyaresongswegrewupwith)."