Are mental health consumer/survivors forgetting their rich historical heritage of self-help - PowerPoint Presentation

1. Are mental health consumer/survivors forgetting their rich historical heritage of self-help & mutual aid? Challenges peer support services face and how to tackle them

2. Thomasina BorkmanPresented at the conference on Supervision of Peer Workforce March 25, 2020 SHARE! the Self-Help And Recovery Exchange Culver City, CA

3. Thomasina BorkmanMy Background & CredentialsLived ExperienceMember 12th step anonymous group for 42 yearsAttended breast cancer support group run by professionals- 2012Bereavement support group in 2005 after mother died Member of feminist consciousness-raising group- 1972 Taught small group dynamicsAlly of SHARE!Professional ExperienceSociology Ph.D. from Columbia UniversityProfessor of Sociology at George Mason University 32 yearsResearch on AA, ostomates, people who stutter, & family survivors of suicide, & othersInternational research on mental health consumer/survivor organizationsParticipatory research at SHARE! since 2008

4. Objectives: Present history & current challenges of peer supportHistory of peer supportWhat is peer support & how does it differ from professional services?History of three social movements: Alcoholics Anonymous, self-help/mutual aid in general, and mental health ex-patients and consumers/survivorsChallenges peer support & consumer-run organizations (CROs) faceCROs required to be hierarchical nonprofit organization; egalitarian relationships missing for mutual helpPeer support became individuated & separated from mutual helpLiability of newness of “peer support specialist” positionsStigma & discrimination from mental health professionals & public

5. What is peer support & what are its origins?Peer Support is self-help & mutual aidYou alone can do it, but you can’t do it aloneSelf-help= you alone can do itMutual Aid= but you can’t do it alone Origins of self-help & mutual aid: self-help groups, also known as mutual help groups, mutual aid self-help (MASH), peer psychotherapy support groups, 12-step groups, & self-help support groups Examples include: Alcoholics Anonymous, Recovery International, Al Anon, Compassionate Friends, Candlelighters, Tough Love

6. You alone can do it, but you can’t do it alone!SELF-HELP Individuals know what they needIndividuals recognize appropriate help when they see itIndividuals choose what, when, & how much help is acceptedEmphasizes inner strengthsMobilizes inner resourcesBolsters self-determinationMUTUAL AIDIndividuals with lived experience have special understandingIndividuals with the problem are part of the solutionReciprocal helping is synergistic (2+2= 5) “Helper-therapy” principle—helping others helps me

7. A warning about terminologyNo agreed upon definitions of self-help groups or synonyms existThe public, professionals, researchers, and users vary in their definitions and use of terminologySolution to terminological confusion– define terms clearly & ask for definitions.Please attend to my definitions during this presentationSelf-Help Group is same as Self-Help Support Group**SHARE’s preferred terminology

8. Definition of Self-Help Group*Members share a problem or statusPersonal change goalPersonal lived experience is basis of knowledge & authority in groupMembers, not professionals, own and run the groupMutual aid & reciprocal helpingLack of fees: minimal voluntary donationsVoluntary participation * Keith Humphreys, 2004, Circles of Recovery: Self-Help Organizations for Addictions. UK: Cambridge University Press.

9. Self-Help /Mutual Aid vs Professional HelpSelf-Help/Mutual Aid ModelAssumes peers are social equalsNo eligibility criteria; all welcomeHelp giving is “gift relationship” w/no expectation of paymentAll welcome to contribute/giveVeteran helps the rookie but relationship among near-equalsReceiver of help not obligated to take/use adviceReciprocity: all give and receive help; all help each otherProfessional Help ModelProfession is seen as jobExpertise/university training & credentialsClient in subordinate relationship with professionalClient assumed to have problem which shows inability to copeClient must meet eligibility criteria to receive servicesHelp sold as a commodify w/client paying fees

10. Self-Help /Mutual Aid vs Professional HelpSelf-Help/Mutual Aid ModelAssumes peers are social equalsNo eligibility criteria; all welcomeHelp giving is “gift relationship” w/no expectation of paymentAll welcome to contribute/giveVeteran helps the rookie but relationship among near-equalsReceiver of help not obligated to take/use adviceReciprocity: all give and receive help; all help each otherProfessional Help ModelProfession is seen as jobExpertise/university training & credentialsClient in subordinate relationship with professionalClient assumed to have problem which shows inability to copeClient must meet eligibility criteria to receive servicesHelp sold as a commodify w/client paying fees

11. Social Context of 1960s-1970sPhysicians & psychiatrists held supreme authority: Nurses & patients followed their ordersIncreasing chronic diseases required patients do more self-care at homeAlcoholics & drug addicts dealt w/as deviants by criminal justice Long term mental hospitals that warehoused seriously mentally ill being closedEx-mental patients dumped into community without resources to care for themCivil rights & cultural movements protesting for social change

12. History of three social movements of self-help groups from 1960s -1970s1960s-1970s turbulent times in US with civil rights movement for black justice, anti-Vietnam war protests, women’s rights, disability movement, & others advocating for humane services & civil rights 1. Alcoholics Anonymous founded in 1935 was growing and being copied by many addiction anonymous groups2. Hundreds of face-to-face self-help groups for various diseases, social problems and stigmatized statuses were forming around the country3. Deinstitutionalization (closing of long term mental hospitals) without community alternatives allowed ex-mental patients & others with severe & persistent mental health problems to form self-help groups

13. Self-Help Groups (SHGs) of peers common to all three social movements in the 1960s-1970sDictionary defines PEER as “one that is equal standing with another”Small face-to-face circle of peers met to share their “experience, strength and hope” in a safe setting; a SHARING CIRCLEPeer = instant identity w/otherShare lived experienceEqual relations, no hierarchyMembers make the rulesMutual helpingVoluntary participation—how much, when & how long

14. AA viewed as separate social movementSpirituality component distinctive12-steps spiritual-based program of personal change12-traditions distinctive form of organizationNo advocacy or affiliation w/outside organizationsAnonymityImitated by 80-100 other SHGs: OA, NA, GA, Al-Anon, etc.Inspired offshoots such as Oxford Houses, Sober Living HousesInspired spinoffs such as Minnesota Model of treatmentBecame very large in substance abuse addictions mutual help

15. Brief History of Two Social Movements: General SHGs & Mental Health Consumer/SurvivorsDefined as organized collective attempt to further common interests outside the sphere of established institutionsBecame separate but overlapping movementsSimilar values & principles: peer support, mutual helping, egalitarian peer relations, empowermentDiffer in definition of peer, goals and approachesMental health movement more advocacy oriented Mental health movement successes lead to government-funded consumer/survivor-run organizations

16. General SHG’s characteristics & evolution Hundreds/thousands of groups created for chronic illnesses, disabilities, social conditions & stigmatized statusesAddress lack of specialized help, disparities & gaps in serviceChallenged dominating authority of medical professionSingle issue groups developed independently of each otherMany groups autonomous & self-funded but great variety of organizational types & affiliations with professionalsSome SHGs have dual goals of coping with issue & advocacy to change health care system

17. Mental health consumer/survivor movement began as ex-mental patient’s liberation movementEx-mental patients let out of long-term hospitals without housing, treatment, support, or jobs & faced stigma, prejudice, indifferenceAngry ex-patients banned together in local SHGs and protested against mental health systemInsane Liberation Front first radical group formed in 1970 in Portland, OregonMental Patient’s Liberation Project (1971) in New York CityNetwork Against Psychiatric Assault (1972) in San Francisco National communication developed through newsletters & conferences (no internet; telephones expensive) –i.e., Madness Network News began in San Francisco (1972-1986) & became nationwide

18. Mad Liberation GrievancesEnd involuntary treatment such as insulin shock therapy & seclusionSuspicious of mental health terminology & diagnoses which are used to control usChange laws & practices that discriminate against people labeled as “mentally ill”– we should have the same civil rights as person with diabetes or heart diseaseOur feelings, especially anger against the mental health system, are real and legitimate, not “symptoms of illness.”

19. Judi Chamberlin’s book On Our Own: Patient Controlled Alternatives to the Mental Health System (1978)On Our Own became the ‘Bible” of the movement Judi Chamberlin regarded as MOTHER of the movementSelf-Help (SHGs) & Advocacy are twin goals of the movementSelf-definition & Self-Determination among major organizing principlesMental patients perceptions about mental illness are diametrically opposed to those of the public & even more so to those of mental health professionals.Exclude non-patients from ex-patient organizations & don’t let them dictate an organizations’ goals. (Chamberlin, 1990, p. 325)

20. “Mentalism”= Untrue Assumptions & Stereotypes held by Public & Ex-patients*Mental patients are:Unable to do anything for themselvesNeed constant supervision & assistanceUnpredictableLikely to be violentLikely to be irrationalMental patients internalize these untruths which oppress them* Judi Chamberlin, 1990, The Ex-Patient’s Movement: Where we’ve been and where we’re going, Journal of Mind and Behavior, 11, ¾, p. 325.

21. Solution to “Mentalism” & Internalized Oppression*SHGs of “ex-patients” engaging in consciousness-raisingAll participants have mental health issues; exclude othersMeet in safe spaceShare life stories with all who want to shareListen to each person’s storyRecognize that obstacles come from societal attitudes, practices, & lawsBecome aware that roadblocks are not just individuals’ weaknessesAcknowledge societal discrimination & stigma *Judi Chamberlin, 1990, The Ex-Patient’s Movement: Where we’ve Been and where we’re going, Journal of Mind and Behavior, 11, ¾, p. 325.

22. Radicals & Moderates of Movement Soon ClashedRadicals rejected psychiatric & medical definitions of mental illness & treatment & wanted to develop new alternative systemRadicals engaged in militant political activismRadicals disrupted professional meetingsModerates willing to work within mainstream mental health system & believed they could change it from withinTwo nationwide networks formed to advocate for changeNational Mental Health Consumers Association (NMHCA)National Association of Psychiatric Survivors (NAPS) “Psychiatric survivor” meant someone who survived psychiatric treatment

23. National Survey of Mental Health SHGs in 1988*Estimated 1000+ SHGs for persons with mental health issues Nationwide survey by sociologist Robert Emerick studied N=104 groupsGroups clustered in large cities on East Coast, West Coast, & upper MidwestTypical group looks like:About 3-4 leadersAbout 33 membersGroup is 2-3 years oldBudget about $30,000 a year*Robert Emerick, 1996, p. 155

24. Ex-Mental Patient Movement had Become More MODERATE by 1988 survey*Group affiliation:Radical groups (affiliated with NMHCA & NAPS)= 26%Moderate groups (local and non-affiliated groups) = 62.5%Conservative groups (Recovery, Inc., Emotions Anonymous) = 11.5%Type of goalsSocial movement—Change system: 62.5% Activities—advocacy, public educationClinical/individual “therapy”: 37% Activities—sharing circle meetings, drop-in centers*Emerick, 1989

25. Federal Community Support Program assisted movement with conferences & fundingCommunity Support Program of National Institute of Mental Health funded national Alternative Conferences beginning in 1985 that allowed movement to develop advocacy activitiesBetween 1989-2002 federal SAMHSA agency funded 14 demonstration projects of peer-run projects:Three clusters of programs:Drop-in centers (Calif. -1992; Maine -1981; Missouri -1996; Florida-1992)Peer support & mentoring (GROW in Ill-1978; Penn.-1989)Education & Advocacy (Conn.-1994;Tenn-1995)On Our Own, Together: Peer programs for people with mental illness, edited by Sally Clay, 2005. Book describes the above 8 programs.

26. Mental Health Consumer/Survivor Movement Successes!1986 Federal legislation required mental health consumers & family members to be on advisory & planning committees1989: National Association of State Mental Health Program Directors endorsed use of mental health consumers in their servicesIncreasingly, mental health consumers & family members gained access to mental health policy-making and advisory committees (could be token)Movement terminology changed:From ex-mental patient movement to mental health consumer/survivor movementFrom self-help groups to peer support46 state governments funded 567 SHGs & peer-run initiatives by 1993.**Segal et al., 1993

27. National Survey of Mental Health SHGs & CROs in 2002*Premier survey agency, Center for Mental Health Services of SAMHSA, conducted survey 30 consumers, family members & researchers consulted on designSophisticated statistical sampling design resulted in national estimates of number of SHGs & CROs.Criteria for inclusion in surveyNo professionally-run services such as clubhouses or lodges Serious mental health problems only; no substance abuse servicesGroups for transitions excluded such as grieving, divorce Internet only groups excludedFamily groups included such as National Alliance for Mentally Ill*Goldstrom, et al.,2007

28. National Survey of Mental Health SHGs & CROs -2002**Goldstrom, et al. (2007)Type% of Total Organizations ( Nationwide # estimates) SHG (Self-Help Group) 44% (N=3315)Advocacy organization 40 (N=3019)CRO (Consumer-Run Organization) or peer-run direct services 15 (N=1133)Total 99% (N=7467)

29. National Survey of Mental HealthConsumer-Run Initiatives in 2012* *Lived experience research group of Johns Hopkins University (2014)Type of organizationPercent of total formal organizationsSHG (Self-Help Group)Excluded from surveyAdvocacy (non-direct support services) 8%Consumer-run initiatives or peer-run direct services 92%

30. By 2012 Mental Health Consumer-Run Organizations Viewed as Mainstream ServicesMore mental health CROs & SHGs than professionally-based psychiatric units or mental health agencies 2002 BUT RARELY RECOGNIZEDNational Coalition of Mental Health Consumer/Survivor Organizations established (2006) (Fisher & Lauren, 2010)Federal agency (SAMHSA) calls CROs evidence-based practice-200936 states with peer support specialist jobs bill Medicaid insurvance for payment by 2014 (Myrick & del Vecchio, 2016)

31. Challenges faced by CROs & Peer SupportConsumer-Run Organizations: mostly government funded & captive to government requirementsNonprofit 501C 3 form of organization has hierarchy of board, officers & members; egalitarian relations needed for mutual help missing Peer support became individuated & separated from mutual helpPeer defined as being in recovery; no knowledge of SHGs or mutual help neededPeer support specialists: trained & credentialed job positions controlled by mental health professionals & governments

32. Challenges faced by CROsGovernment funders require nonprofit form of organization:Hierarchical organization antithetical to mutual help which needs egalitarian relationships Tax-exempt legal entity prohibits advocacy activities but antithetical to CRO’s goals to change mental health system from withinMental Health Peer defined by government as person in recovery from mental disorders No standards or consensus about what is recoverySHG members are in recovery & have criteria (have sponsor, attend meetings, work the program, give service)No requirement that peer knows about/understands mutual help, SHGs, or peer support

33. Additional Challenges to Peer SupportMental health professionals may be stigmatizing & discriminatory*Some mental health peer leaders negative toward sharing circles, SHGs & mutual help processesAttractive but inappropriate for peers to imitate professional model of helpingOrganizational culture that lacks recovery & mutual help orientation & practices**Liability of newness of “peer support specialist” positions***Betwist & between identity of multiple roles: staff, friend, service userNo consensus on competencies & training Interface of mutual help and professional models clash in professionally-based mental health agencies Ambiguity of transmitting “lived experience” as knowledge base[*, **, *** see References]

34. Conclusion: Tackling the Challenges Faced by CROs & Peer SupportLearn history of SHGs & mutual help and their connections with current peer support and CROsReturn to participating in Sharing Circles & RecoveryResearch is looking at some perplexities: What makes a peer a peer?Innovations that overcome some problematic featuresIntentional Peer Support (IPS) minimizes hierarchy & separateness [Mead,2008] Requiring peer support staff to know about & practice mutual help-based recoveryRadical inclusion interaction system of SHARE! positive innovation

35. Intentional Peer Support*Core Principles of Peer Support**Change from helping role to learning togetherShift roles from problem solver to validatorChange from individual viewpoint to relationship lensSubstitute hope & possibility for fearUsed in Maine & other states in credentialing training for peer support specialist*Mead, 2008 **McGill & Powell, 2017

36. SHARE! Our conference host is exemplar in tackling challengesOrganizational culture of beliefs & practices oriented toward SHGs & recoveryStaff hired & monitored to be in active recovery by participating in SHGs (mutual help)Evolved a radical interaction system of inclusion over the years State of California has funded them to train peers in the systemInteraction system has 21 Tools of the Trade Staff & management use the interaction system to equalize relationshipsRadical inclusion means no one is turned away from SHARE!

37. SHARE!s Tools of the Trade:Radical interaction system of inclusionInteraction system has five functions Develop respectful peer relationships of unconditional regardStaff minimize authority of their paid positionCoach, guide or support to encourage recoveryUse recovery-oriented ways of helping people that do not belittle or shame themDeal with disruptive situations and prevent/neutralize conflict in manner that strengthens the relationship

38. What are your ideas for addressing challenges?I would like to hear your ideas for improving the current situation for peer supporters or mental health consumer-run organizations.THANK YOU FOR YOUR ATTENTION!THE END

39. ReferencesAmsalem, D., Hassion-Ohayon, I., Gothelf, D., & Roe, D. (2018). Subtle ways of stigmatization among professionals: The subjective experience of consumers and their family members. Psychiatric Rehabilitation Journal, 41, 3, 163-168.Bluebird, X . (2009, December 17). History of the consumer/survivor movement. Center for Mental Health Services, Substance Abuse and Mental Health Services (SAMHSA), U. S. Dept. of Health & Human Services. Chamberlin, J. (1978). On Our Own: Patient -controlled Alternatives to the Mental Health System. NY: McGraw-Hill.Chamberlin, J.(1990). The ex-patient’s movement: Where we’ve been & where we’re going. The Journal of Mind & Behavior,11, ¾:323-336.Clark, C., Barrett, B., Frei, A., & Christy, A. (2016). What makes a peer a peer? Psychiatric Rehabilitation Journal, 39,1,74-76Clay, S. (Ed.) 2005. On Our Own, Together: Peer Programs for People with Mental Illness. Nashville: Vanderbilt University Press.

40. References IICrane, D. A., Lepicki, T., Knudsen, K. (2016). Unique and common elements of the role of peer support in the context of traditional mental health services. Psychiatric Rehabilitation Journal, 39,3,289-291.Emerick, Robert E. 1991. The politics of psychiatric self-help: Political factions, interactional support, and group longevity in a social movement. Social Science and Medicine 32,10: 1121-1128. Emerick, Robert E. (1989). Group demographics in the mental patient movement: Group location, age, and size as structural factors. Community Mental Health Journal 25, 4 Winter: 277-300.Emerick, R. E. (1996). Mad liberation: The sociology of knowledge and the ultimate civil rights movement. The Journal of Mind and Behavior 17,2,135-160.

41. References IIIFisher, D. & L. Spiro. (2010). Finding and using our voice: How consumer/survivor advocacy is transforming mental health care. Ch. 10, pp. 213-233 in L. D. Brown and S. Wituk (Eds.) Mental Health Self-Help. DOI 10.1007/978-1-4419-6253-9_10. NY: Springer Science +Business Media. LLCGoldstrom, I. D., Campbell, J., Rogers, J. A, & others. (2006). National estimates for mental health mutual support groups, self-help organizations, and consumer-operated services. Administration & Policy in Mental Health and Mental Health Services Research,33,1.92-103.Humphreys, K. (2004) Circles of Recovery: Self-help organizations for addictions, Cambridge: Cambridge University Press.Ibrahim, N., Thompson, D., Nixdorf, R.,, Kalha, J. & others. (2019). A systematic review of influences on implementation of peer support work for adults with mental health problems. Social Psychiatry and Psychiatric Epidemiology. https://doi.org/10.1007/s00127-019-01739-1McGill, & Powell. (2017). On Our Own of MD Newsletter.Mead, S. (2008). Intentional Peer Support: An Alternative Approach Workbook. New Hampshire. Moran, G. S., Russinova, Z., Gidugu, V., & Gagne, C. (2013). Challenges experienced by paid peer providers in mental health recovery: A qualitative study. Community Mental Health Journal, 49: 281-291. 

42. References IVMyrick, K. & del Vecchio, P. (2016). Peer support services in the behavioral healthcare workforce: State of the field. Psychiatric Rehabilitation Journal, May 16. Riessman, F, & Carroll, D. (1995). Redefining Self-Help: Policy and Practice. San Francisco: Jossey-Bass Publishers. Salzer, M. S. (2010). Certified peer specialists in the United States Behavioral Health system: An emerging workforce. Pp. 169-191 in L. D. Brown and S. Wituk (eds.) Mental Health Self-Help. DOI 10.1007/978-1-4419-6253-9_10. NY: Springer Science +Business Media. LLC.Segal, S. P, Silverman, C., & Temkin, T. (1995). Characteristics and service use of long-term members of self-help agencies for mental health clients. Psychiatric Services, 46,3, 269-274.SHARE! (2018). Peer Toolkit Training Manual. Photocopied. Culver City, CA.Simpson, A., Oster, C., & Muir-Cochrane, E. (2018). Liminality in the occupational identity of mental health peer support workers: A qualitative study. Intern’l Journal of Mental Health Nursing, 27, 662-671.