Supporting Persons with Disabilities Families and Service ......Fear prevents me from thinking about...

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SupportingPersonswithDisabilities,Families,andServiceProvidersDuringLaterLifeTransitionsandFuturePlanning:RoleofSocial

WorkersAAIDD2016Conference- June2016

LynneTomasa,MSW,PhDSonoranUCEDD

Objectives

Review:• WhatWeKnowandExperience• ResearchStudies:2008&2016• PreliminaryThemesandResults• Suggestions fromServiceProfessionalsandFamilyCaregivers

• ProfessionalRole/SocialWork

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Literature

• Assessingfamilies’serviceneeds• Effectsofinformalandformalresourcesonburdenandplacement

• Developinglater-life-planningprogramsforadultswithintellectualdisabilities

• CaregiverAppraisal• Givingfamiliestools:peersupportcurriculum

• Siblings’roleinfuturecareandplanning

TwoResearchStudies:

2007– 2008• Interviewswith25familycaregivers

• Analysis:Themes• Outcome:FutureCarePlanning:ARoadmapforFamilyCaregivers.

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2015– 2016Follow-UpStudy

2015– 2016• Interviewswithindividuals withIDD&familycaregivers

• Follow-upwith5CGsfromfirst2007-2008study– Completed30/40FamilyCaregivers(FCG)– Completed13/20personswithIDD

• Online questionnaireforserviceproviders(N=47)andCGs(N=96)

StudyObjectives:2015-2016• Survey familycaregivers (FCG)andserviceproviders (SP)about theirexperiences androlesinsupporting individuals withdisabilities andeachotherduring futureplanning andtransitions ofcare.

• Interview bothindividuals withdisabilities andfamilycaregivers about–Wishesandneedsduringtheplanningprocess– Accomplishmentsandnextsteps–Whatworksandwhatdoesnot– Experiencesandemotions

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Demographics:ServiceProviders

• Experience:62%<9yrs.;38%>10years• Roles:Directservice16%;Support

coordinator;22%,other:62%• CommunityServed:26%withpersons60

yearsandolder

Demographics:FamilyCGs(N=95)

• 84%wereprimarycaregiver• 82%ofpersonwithdisabilityhadsiblings• 76%ofpersonswithIDDlivedwithCG• 11%hadchangeinresidenceinpastyear• 53%hadfullguardianship, 11%nolegal

role

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PlanningbyCaregivers

26

40

34

0

5

10

15

20

25

30

35

40

45

None Alittle Alot

Percen

t

Caregivers:Doyoudisagreeoragree?

12 14

37

24

1412

6

26

35

22

0510152025303540

StronglyDisagree

Disagree Neither Agree StronglyAgree

Percen

t

Idon'tknowhowtostarttheplanningprocess

Ineedhelptostartplanning

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ThoughtsoremotionsFCGssharedwithserviceprovidersN=45

ThoughtorEmotion Count

Negativeexperiencewithserviceproviders 34

Fear 33

Mistrustoftheservicesystem 31

Denial 27

Positiveexperiencewithserviceproviders 25

Need forcontrol 23

Hopelessness 22

Senseofloss 20

Ambiguity 16

Other 6

ThoughtsoremotionscaregivershaveexperiencedN=86

ThoughtorEmotion Count

Negativeexperiencewithserviceproviders 50

Mistrustoftheservicesystem 50

Fear 45

Sense ofloss 33

Hopelessness 32

Positiveexperiencewithserviceproviders 29

Need forcontrol 28

Ambiguity 28

Denial 22

Other 20

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TriggersthatmadeCGSstarttothinkaboutfutureplanningN=86

Triggers Count

Ageofcaregiver 43

Changesincaregiver’s health 27

Feelingexhausted 20

Behavioral changesinchild/relative 19

Changesinchild/relative’shealth 13

Child/relativecommunicateddesiretomoveout 12

AnotherpersonI/weknowmadeplans 9

Siblings offeredtogetmoreinvolvedinprovidingcare/support 5

Other 33

FuturePlanning:ServiceProviders

0

13

35 39

13

0 0 2

63

35

0

15

41 39

4010203040506070

StronglyDisagree


Percen

t

CGsdon'tknowhowtostarttheplanningprocess

CGsneedhelptostartplanning

CGswillseekinformationortoolsaboutfutureplanning

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FuturePlanning:ServiceProvider

0 0

13

52

35

0 0

22

3543

0 2

39

52

7

0102030405060

StronglyDisagree


Percen

tCGstresslevelincreaseswhenthinkingaboutmakingplans

CGsfeeltheyare theonlyonwhounderstandtheneedsoftheirchild/relative

CGsaregenerallynotrisktakers

FuturePlanning:Caregiver

5 5

13

3641

6

25 25 27

18

4

18

27

42

10

0

10

20

30

40

50

StronglyDisagree


Percen

t

Mystresslevelincreaseswhenthinkingaboutmakingplans

Iamtheonlyonwhounderstandtheneedsofmychild/relative

Iamgenerallynotarisktaker

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0 29

72

17

2

33 30 26

90 0

13

54

33

01020304050607080

StronglyDisagree


Percen

tFearpreventsFCsfromthinkingaboutchild/relative'sfuture

CGsbelievethatthingswillworkoutbyitself

CGsareanxiousabouttheavailabilityofservicesinthefuture


20

33

24

158

47

31

19

401

916

32

41

0

10

20

30

40

50

StronglyDisagree


Percen

t

Fearpreventsme fromthinkingaboutmychild/relative'sfuture

Ibelieve thatthingswillworkoutbyitself

Iamanxiousabouttheavailabilityofservicesinthefuture

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10


2

24

41

28

40

4

41 39

1515

3539

92

0

10

20

30

40

50

StronglyDisagree


Percen

tCGsarereadytosupporttheirchild/relative'sdesireformoreindependence

Thepersonwithadisabilityisanimportantsourceofcompansionship

CGsarewillingtoletgooftheircaregiving role


6 8

24

3428

2

22

36

25

1419 22

2621

12

0

10

20

30

40

StronglyDisagree


Percen

t

Iamreadytosupportmychild/relative'sdesireformoreindependence

Mychildorrelativewithadisabilityisanimportantsourceofcompansionship

Iamwilling toletgooftheircaregiving role

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MeetDirk,Dad,Sister(2008&2016)

Themes

2007-2008• Triggers• Barriersandchallenges• Successes• Systems• Healthandcaredelivery• Emotionalresponsesofcaregivers

2016(Preliminary)• Experiences• Emotions• OtherPersons involved• Systems• Wishes andgoals• Support needs• Suggestions&lessons

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ThematicHighlights

• Itisaprocessthatevolvesandchanges• Evokesabroadrangeofintenseemotions

• Planningmuststartearly• Familieswantinformation• Decisionsaboutresidentialoptionsareverydifficult

Highlights

• One-on-oneassistanceisneeded• Familiesareveryfrustratedandneedhelptonavigatethroughsystems

• Centralizedinformation ishelpful• Weareaskingcaregiversandindividualstogooutoftheir“comfortzone”–professionalsneedtodothattoo

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HelpfulStrategies:fromSPs

• Provideparentswithsuccessstories• Includeindividual’svision• Understandthatlifelongconversationsarehardforfamilies

• Behonest• Focusonqualityoflife• Valuetheroleofthecaregiver

HelpfulStrategies:fromCaregivers

• Behonest,gentle,straightforward• Show/tellCGandindividual withIDDaboutchoicesthathavebeenmadebypeoplehe/sheknows

• Haveachecklist/to-dolist• Provideconcreteinformation• Askopinionsof thepersonwithadisability

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Whatisyourrole?

• Advocate• Communitybuilder• Coach• Educator• Facilitator• Factfinder• Informationist• Mediator

ProfessionalRole

Buildcommunicationskillsandstrategies• Behonest andgentle• Bedirectandclear• Provideexamples• Engageandwelcomeinputfromothers• Stayneutral• Utilizesimplewordsandphrases• Bepresentandcurious

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ProfessionalRole

• Assistwithgoalsetting(dreams,hopes)• Identifyunfinished business–Personal,family,spiritual

• Encouragecontinuednetworking–Newrelationshipsandopportunities

• Identifycomfortlevelwithrisktaking

ProfessionalRole

• Valuethecaregiverrole• Acknowledge thedifficultiesandrewards• Allowcaregiverstogrieve• Givepermission tohavenegativethoughtsorfeelings

• Acknowledge fearsandanxieties

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SummaryPoints

• Transition/futureplanningcanbehard• Payattentiontocaregiveremotions• Peopleneedinformationandsupport• Provideavenuesforexpressionandengagement

• Addressgriefandloss• Minimizeprofessionalburnoutandmental/emotionalsaturation

QuestionsandSuggestions

[email protected]

520-626-7823

Project fundedbyArizonaDevelopmentalDisabilities PlanningCouncil

Supporting Persons with Disabilities Families and Service ......Fear prevents me from thinking about...

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