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

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.

Thrilled To Be Here for Many Reasons

Everything I know Comes from Peers: Long-Term Ally of Peer Support

JulianRappaport

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

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

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

Would, Could, and Should Participate

• Peoplewithsignificantmentalhealthisueswanttoparticipate

• Evidence-basedinterventionsexistthatpromoteparticipation(supportedemployment,housing,education,socialization)

• Ampleevidencethatparticipationisgoodforeveryone,includingpeoplewithseriousmentalillnesses

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

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

Knowledge and Beliefs

• Fundamental#1:CommunityInclusionisimportant• Fundamental#2:CommunityInclusionappliestoeveryone

• Fundamental#3:Communityinclusionrequiresseeing‘theperson,’not‘thepatient’

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

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

Fundamentals #9-11: The Environment and Social

Determinants • Usingresourcesavailabletoeveryone• Understandingandaddressingenvironmentalbarriers• Understandingsocialmodelofdisability

• Creatingwelcomingandembracingcommunities

Peer Roles in Promoting Inclusion and Participation

•  TempleUniversityCollaborativehaspartneredwithTheCopelandCenterandDoorstoWell-BeingonaCommunityInclusionPeerFacilitatorCertificationInitiative

•  3-dayexperientialcourse1.  Understandingone’sowncommunityinclusionandparticipation2.  utilizetoolsforidentifying,addressingandimprovingpolicyandorganizational

changestoimprovecommunityinclusionoutcomes;3.  apply1:1facilitationskillsinsupportingapeerinrecoverytoincreasetheirrole

andmeaninginthecommunityoftheirchoosing;4.  expandtheircommunityconnectionsandsupportivenetworkstopromote

communitywellness.

IhaveanunpaidrolewithD2Wasapolicyandevaluationadviser

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

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

Addressing Prejudice and Discrimination

• Increasepublicawarenessandadvocacy• Systemsandprogramadvocacy• Speakersbureaus

• Addressself/internalizedstigma• Combatyearsofbeingtoldyouwouldn’t,couldn’t,orshouldn’tparticipate

Supported Community Inclusion and Participation Intervention •  Supportpeopleinidentifyingtheirinclusionandparticipationinterests

•  TUCP•  Identifyindividualneedsandenvironmentalbarriersthatlimitparticipation

•  Supportthedevelopmentofaplantoaddresstheseissues•  Increaseknowledgeandaccesstomainstreamresources• OneparticularprogramIreallylike

•  CommunityRecoveryConnectionsProgram(BedfordVAMC)

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?

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.

Family Resources •  FamiliesHealingTogether–Arecovery-orientedfamilypsychoeducationprogram

• Promotefamily-basedleisure

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ReligionResources

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IntimacyandSexuality

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Parenting

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 msalzer@temple.edu

Checkout our website:

www.tucollaborative.org