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Life In The Community Like Everyone Else: Community Inclusion And The Essential
Role Of Peers
MarkS.Salzer,Ph.D.PsychologistandProfessorofSocialandBehavioralSciences
Director,TempleUniversityCollaborativeonCommunityInclusion
Formoreinformationabouttheseissuespleasegotowww.tucollaborative.orgorsendanemailtomsalzer@temple.edu
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Disclosure and Acknowledgments • Ihavenofinancialconflictsofinteresttodiscloseassociatedwiththispresentation.
• Salarysupportoverthepastyearincludes:• NIH;NIDILRR;MentalHealthPartnerships(SAMHSA);ProjectHome(SAMHSA);PABAS/DrexelUniversity(ASERT/CommonwealthofPA)
• Consultingoverthepastyearincludes• NASMHPD;JBS;NationalCouncil;Yellowbrick;CountyofSanDiego;Health&HumanResourcesEducationCenter(AlamedaCounty,CA);NCGovernor’sInstitute;ORE-ACT;FloridaCertificationBoard;NYSOMH;VocalVA(stategrant)
• IamamemberoftheBoardofDirectorsofPathwaysPA• IwillbementioningworkIdowiththeCopelandCenterthathasledtopaidconsultingwork,butIreceivenopaymentsfromtheCopelandCenter
• TravelsupportforthispresentationwasprovidedbyiNAPS.Nohonorariumwasaccepted.
• Acknowledgmentsforthispresentation• ThecontentsofthispresentationwereprimarilydevelopedwithgrantsfromtheNationalInstituteonDisability,IndependentLiving,andRehabilitationResearch(90RTCP0001-01-00and90RT5021-02-00)withintheAdministrationforCommunityLiving(ACL),DepartmentofHealthandHumanServices(HHS).ThecontentsofthispresentationdonotnecessarilyrepresentthepoliciesofNIDILRR/ACL/HHS,andyoushouldnotassumeendorsementbytheU.S.FederalGovernment.
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Thrilled To Be Here for Many Reasons
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Everything I know Comes from Peers: Long-Term Ally of Peer Support
JulianRappaport
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Community Participation: Every “Recovery” Story I Have Heard Involves Community Participation
• Employment• School• Housing• Dating/marriage• Parenting• Leisure/recreation• Spirituality/religion• Civicengagement• Friendshipsandsocialrelationships
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I Believe that Peers Are Essential for Promoting Community Inclusion and Participation
1)Whoknowsbetteraboutlivinginthecommunitywithlivedexperiencethanpeers?–KnowledgeandSkills2)Whounderstandstheimportanceofinclusionandparticipationmorethanpeers?-DedicationandPassion3)Whoischangingtheperspectivesandwaysofthinkingofnon-peersatalllevelsaroundtheworld?–PresenceandAdvocacy
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At The End of This Keynote I Hope That…
• Youhavetheevidenceforconvincingyourcolleaguesthatinclusionandparticipationarenotjustaright,andarealsocriticalforeveryone’sphysical,cognitive,andmentalhealthandwellness
• Youlearnsomefundamentalsforpromotinginclusionandparticipation
• Youhavenewideasandresourcesforhowyoucanpromoteinclusionandparticipation
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WhatisCommunityInclusion?
https://www.thinkinclusive.us/inclusion-exclusion-segregation-integration-different/
1. Beingvaluedforone’suniquenesses
2. Opportunitytoparticipatelikeeveryoneelse
3. Welcomingandembracingenvironment
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Community Integration/Inclusion as a Right • Definition:“Theopportunitytoliveinthecommunity,andbevaluedforone’suniquenessandability,likeeveryoneelse.”(Salzer,2006)
• LegalandPolicyGrounding• AmericanswithDisabilitiesAct(1990)• SupremeCourtOlmsteaddecision(1999):unnecessaryinstitutionalizationisaformofdiscriminationprohibitedbytheADA
• President’sNewfreedomInitiative(2001)• President’sNewFreedomCommissionReport(2003)
Salzer,M.S.(2006).Introduction.InM.S.Salzer(ed.),PsychiatricRehabilitationSkillsinPractice:ACPRPPreparationandSkillsWorkbook.Columbia,MD.:UnitedStatesPsychiatricRehabilitationAssociation.
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CommunityParticipationasaMedicalNecessity*
*Salzer, M.S. & Baron, R.C. (2016). Well Together – A blueprint for community inclusion: fundamental concepts, theoretical frameworks and evidence. Published by Wellways Australia Limited, Melbourne, Australia. Available at http://tucollaborative.org/wp-content/uploads/2017/05/Wellways-Well-Together.pdf
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International Classification of Functioning, Disability, and Health (ICF: WHO, 2002)
Health Condition (Disorder or Disease)
Body Functions and Structure
Activity (Execution of a task
or action) Participation (Mobility and
Involvement in a social situation)
Personal Factors Environmental Factors
ContextualFactors
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Would, Could, and Should Participate
• Peoplewithsignificantmentalhealthisueswanttoparticipate
• Evidence-basedinterventionsexistthatpromoteparticipation(supportedemployment,housing,education,socialization)
• Ampleevidencethatparticipationisgoodforeveryone,includingpeoplewithseriousmentalillnesses
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Participation Affects Cognitive Functioning • Physicalactivity:“Agrowingbodyofliteraturesuggeststhatphysicalactivitybeneficiallyinfluencesbrainfunctionduringadulthood,particularlyfrontallobe-mediatedcognitiveprocesses,suchasplanning,scheduling,inhibition,andworkingmemory.”
• Ratey,J.J.,&Loehr,J.E.(2011).Thepositiveimpactofphysicalactivityoncognitionduringadulthood:areviewofunderlyingmechanisms,evidenceandrecommendations.RevNeurosci,22(2),171-185.doi:10.1515/rns.2011.017
• Socialinteraction:Socialisolationassociatedwithcognitivedecline(Cacioppo&Hawkley,2009)
• Unemployment:EldarShafir–Researchonthescienceofnothavingenough--“Povertyimpedescognitivefunction”(Science,Aug2013)
• Thestrainofpovertydrainscognitiveresources,especiallyastasksbecomemorechallengingandcomplex
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Current State of Community Participation
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More People in the community…but NOT OF the Community • Stigma and Discrimination Persists
• Housing • Education • Employment • Financial independence
• Blocked rights • Limited social roles • Atrophied leisure/recreation
• Limited attention to spiritual issues
• Limited encouragement to vote
• Limited self-determination
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FundamentalsforPromotingCommunityInclusionand
Participation
Salzer,M.S.&Baron,R.C.(2016).WellTogether–Ablueprintforcommunityinclusion:fundamentalconcepts,theoreticalframeworksandevidence.PublishedbyWellwaysAustraliaLimited,Melbourne,Australia.Availableathttps://media.wellways.org/inline-files/Well%20Together_2%20May%202016_Final_Web_0.pdf
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Knowledge and Beliefs
• Fundamental#1:CommunityInclusionisimportant• Fundamental#2:CommunityInclusionappliestoeveryone
• Fundamental#3:Communityinclusionrequiresseeing‘theperson,’not‘thepatient’
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Fundamental #4: Self-Determination and Dignity of Risk are Critical • Self-determinationrefersto“actingastheprimarycausalagentinone’slifeandmakingchoicesanddecisionsregardingone’squalityoflifefreefromundueexternalinfluenceorinterference”(Wehmeyer,1996,p.24).
• Dignityofrisk(Perske,1981)referstotherighttomakechoicesthataffectone’sownlifeevenwhenthesechoicescould,ordo,turnouttobemistakes,allowingindividualstolearnfromtheirmistakes,alongtheway,likeeveryoneelse.
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Fundamental #5: Multiple domains of mainstream life should be sought
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Fundamental #6: Seek participation that is more like everyone else
ParticipationLessLike ParticipationMoreEveryoneElse LikeEveryoneElseInstitution/Agency-Based------------------------Community-BasedparticipationStaff-directedparticipation--------------------------Person-directedparticipationSeparation----------------------------------------------------------------------Association
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Fundamental #7: Use emerging support technologies, the natural supports of families and friends, and the engagement of peer supports
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Fundamentals #9-11: The Environment and Social
Determinants • Usingresourcesavailabletoeveryone• Understandingandaddressingenvironmentalbarriers• Understandingsocialmodelofdisability
• Creatingwelcomingandembracingcommunities
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Peer Roles in Promoting Inclusion and Participation
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• TempleUniversityCollaborativehaspartneredwithTheCopelandCenterandDoorstoWell-BeingonaCommunityInclusionPeerFacilitatorCertificationInitiative
• 3-dayexperientialcourse1. Understandingone’sowncommunityinclusionandparticipation2. utilizetoolsforidentifying,addressingandimprovingpolicyandorganizational
changestoimprovecommunityinclusionoutcomes;3. apply1:1facilitationskillsinsupportingapeerinrecoverytoincreasetheirrole
andmeaninginthecommunityoftheirchoosing;4. expandtheircommunityconnectionsandsupportivenetworkstopromote
communitywellness.
IhaveanunpaidrolewithD2Wasapolicyandevaluationadviser
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Address Knowledge and Beliefs • Peopleneedtobemadeawareoftheimportanceofinclusionandparticipationonhealthandwellness
• Appreciatethatwegenerallycannotpredictreadinessforparticipationbeyondbeinginanacutestateandmotivation
• NeedtoalterourperceptionsaboutpeoplewithSMI• MentalhealthprofessionalshavesimilarattitudesandbeliefsaboutindividualswithSMIasthegeneralpopulation:‘‘nearlythreequartersoftherelevantpublicationsreportthatbeliefsofmentalhealthcareprovidersdonotdifferfromthoseofthepopulation,orareevenmorenegative’’(Schulze,2007,p.142).
• ResearchonPygmalioneffect• StrategiesforHelpingUsTell“JohnthePerson”Stories
• Authenticengagementofpeerspecialists• Peerengagementinco-developingandimplementingservices• Stigma-bustingcampaignswithinourmentalhealthservices(JoyceBelllabelingexercise)
• Moreconsumerspeakers“in-house”• Providerslearningtotellourrecoveryandinclusionstoriesaboutpeopleweworkwith
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Promote and Protect Self-Determination and Dignity of Risk
• Useapproachesthatfacilitateself-determinationandaddressriskhead-onratherthanopposingriskoutright• WRAP;Develop“personalmedicines”;SDC;PsychiatricAdvancedDirectives;SharedDecision-Making
• Doing“with”ratherthan“for”• Managingrisk-http://tucollaborative.org/pdfs/Toolkits_Monographs_Guidebooks/community_inclusion/Managing_Risk_in_CI.pdf
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Addressing Prejudice and Discrimination
• Increasepublicawarenessandadvocacy• Systemsandprogramadvocacy• Speakersbureaus
• Addressself/internalizedstigma• Combatyearsofbeingtoldyouwouldn’t,couldn’t,orshouldn’tparticipate
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Supported Community Inclusion and Participation Intervention • Supportpeopleinidentifyingtheirinclusionandparticipationinterests
• TUCP• Identifyindividualneedsandenvironmentalbarriersthatlimitparticipation
• Supportthedevelopmentofaplantoaddresstheseissues• Increaseknowledgeandaccesstomainstreamresources• OneparticularprogramIreallylike
• CommunityRecoveryConnectionsProgram(BedfordVAMC)
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Natural Support Interventions • Buildingandutilizingnaturalsupports
• COMPEER• Club21(Alternatives,Inc.)• CirclesofSupport
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Peers Can Be the Advocates for Change in Programs and Organizations
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Challenges in Promoting Inclusion: More Comfort with Some Topics
Rather than Others?
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Please tell us how often you support your peers in… Mean Score 1 = “Never”
5 = “Always” Type of Support
peer support 4.48
Core Supports
encouraging self-determination and personal responsibility 4.26
health and wellness 3.87
hopelessness 3.84
communication with providers 3.68
illness management 3.62
stigma in the community 3.56
family relationships (e.g., with parents, siblings, cousins, etc.) 2.95
Intimacy Supports
spirituality/religion 2.74
parenting 2.14
dating 1.74
developing friendships 3.51 Leisure/ Social
Supports
leisure/recreation (e.g., exercise, hobby groups, movies) 3.25
transportation 3.06
citizenship (e.g., voting, volunteering, advocacy) 2.83
education 3.16 Career Supports
employment 2.94
developing WRAP plans 3.04 WRAP/ PADS developing psychiatric advanced directives 2.27
Salzer, M.S. (2010). Certified peer specialists in the United States Behavioral Health System: An emerging workforce. Brown, L.D. & Wituk, S. (Eds.). Mental health self-help: Consumer and family initiatives (pp. 169-191). New York: Springer.
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Family Resources • FamiliesHealingTogether–Arecovery-orientedfamilypsychoeducationprogram
• Promotefamily-basedleisure
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ReligionResources
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IntimacyandSexuality
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Parenting
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Challenges in Promoting Community Inclusion
• Groupeventsareseductive,butdotheyleadtofullinclusion?• Strongbeliefinthebenefitsofgettingpeopleouttoagroupevent,butIamnotsurehowbeneficialitisinthelong-term(orevenshortterm)
• Concernthatwebecomeoverlydependentongroupeventsanddonotmovetoindividualizedinclusionsupports
• Groupeventsareeasierandmakeusfeelgoodaboutdoingsomething,butitisnotreallyinclusion
• Getsbignumbersofparticipants,arefun,andmakesusfeelgood
• Concernsaboutreadinessorcapabilities• Outputincentives:Wecanpointtohowmanypeoplewearesupportingandhowmanyeventsweputtogether,butlong-terminclusionisnothappening
• Promotinginclusionishard,andrequiresreallygoodsupervisionandteamworkthatfocusesonindividualsituations
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Thank You!!
Feel free to contact me at [email protected]
Checkout our website:
www.tucollaborative.org