The National Mental Health Consumers’ Self-Help Clearinghouse Into the Thick of Things: Promoting Community Inclusion in Peer-Run Services Presented by The Temple University Collaborative on Community Inclusion for Individuals with Psychiatric Disabilities And The National Mental Health Consumers’ Self-Help Clearinghouse The contents of this presentation were developed under a grant from the Department of Education, NIDRR grant number H133B100037 (Salzer, PI). However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.

Our Presenters Joseph Rogers is executive director of the National Mental Health Consumers’ Self-Help Clearinghouse (funded in part by the Substance Abuse and Mental Health Services Administration) and chief advocacy officer of the Mental Health Association of Southeastern Pennsylvania. He is an internationally known advocate and a leader of the consumer movement, with particular expertise in the design and implementation of peer-run programs as well as in behavioral health policy. Christa Burkett is the technical assistance coordinator at the National Mental Health Consumers’ Self-Help Clearinghouse and Co-Chair of The Temple University Collaborative on Community Inclusion’s National Leadership Committee. Bryce Hewlett presently serves as the executive director of the Delaware Consumer Recovery Coalition - the statewide, c/s/x network of Delaware. Bryce is a community organizer and activist at heart. His involvement in the c/s/x movement began in Philadelphia in 2007. Since that time he has helped organize several Alternatives conference and presented at many national conferences. Part of his current work includes facilitating placement of peer specialists in Delaware’s emerging community mental health programs as well as providing oversight and support of peer specialists in the statewide coalition.

Peer Advocacy Movement Grew out of Struggle for Rights & Empowerment International Conference on Human Rights and Against Psychiatric Oppression, Vermont, 1985

Ex-patients’ Rights Groups Form in 1970s and Early 1980s …in Massachusetts, California, New York, Pennsylvania, Florida, Oregon Judi Chamberlin Sally Zinman Jay Mahler Ed Knight Leonard Roy Frank Sally Clay Dan Fisher David Oaks George Ebert Joseph Rogers 4 4

On Our Own: Patient Controlled Alternatives to the Mental Health System

Movement Values Control Choice Self-determination Empowerment Recovery “We want as full as possible control over our own lives. Is that too much to ask?” –Howie the Harp Howie the Harp (1953-1995)

Decades Spent Convincing Establishment of Peer Support’s Value • Presenting at conferences • Attending meetings of professionals and administrators • Serving on boards and committees • Writing and publishing articles Former SAMHSA administrator Charles Curie supported recovery movement, fought use of S&R 1993 sit-in in then-CMHS director Dr. Bernard Arons’ office led to more funding for peer-run programs.

Then-U.S. Surgeon General David Satcher Paradigm shift: Establishment believes in recovery and accepts value of peer support • “Mental Health: A Report of the Surgeon General” (1999) • Report of the President’s New Freedom Commission on Mental Health (2003) Michael F. Hogan, Chair, President’s New Freedom Commission Then-U.S. Surgeon General David Satcher

Individualized and Person-Centered Powers-that-be” realize that recovery-oriented, peer-run services are key to recovery SAMHSA recognizes Peer Support as one of the 10 fundamental components of recovery. The 10 are: Strengths-Based Peer Support Respect Responsibility Hope Self-Direction Individualized and Person-Centered Empowerment Holistic Non-Linear SAMHSA Administrator Pamela S. Hyde (top); CMHS Director Paolo del Vecchio (bottom)

Peer Specialists in Pennsylvania ● CMS approved Medicaid reimbursement for peer specialist services in PA in 2007. ● It is going well in PA. ● Every county must provide peer specialists to any Medicaid recipients who meet the “medical necessity” criteria.

“The National Association of Peer Specialists, Inc “The National Association of Peer Specialists, Inc. (NAPS), is a private, non-profit organization dedicated to peer support in mental health systems. www.naops.org Founded in November 2004 by a group of peer specialists, the organization has quickly grown with members from every state.”

Genesis of Study of Consumer-Operated Service Providers and Community Integration Little indication that consumer-operated service providers are helping with community integration Temple Collaborative and Clearinghouse brainstorm a grant proposal to NIDRR

Procedures Creating survey questionnaire Sending online request-for-Information Sifting through responses Contacting respondents for more information Compiling a compendium of results Identification of community integration strategies Developing a one-day training

Sample Responses: Housing ● Dodge City Peaceful Tribe (Kansas) • Integrated peers into existing patterns of small-town social networks. • Tribe developed relationships with a core group of 20 small local landlords who advertise by word-of-mouth and rent to people based on the landlord’s comfort with the person recommending the renter. • If peers are hospitalized, their home can be held for them and the Tribe can mediate if there are problems.

Employment ● Office of Consumer Advocates, (Hagerstown, Maryland) ∙ Built relationship with Martin’s Supermarkets (branch of Giant Foods, which hires individuals with disabilities and provides sensitivity training to staff who do not have disabilities) ∙ Refers peers to potential employment opportunities in five local Martin’s stores.

Education ● Howie the Harp (New York City) ∙ Collaborates with the SUNY Manhattan Educational Opportunities Center for adult learners to help peers get GEDs ∙ Participates in free PACE University computer literacy skills training program ∙ Continues to seek mainstream training-provider to help train peers in basic office skills.

Education: ● Amarillo (Texas) Area Mental Health Consumers ∙ Helps peers get scholarships at regional institutions of higher education. ∙ Refers others to: ◦student loan offices for Pell Grants and student loans. ◦ Handicapped Student Services at Amarillo College ◦ Panhandle Independent Living Center for computer training

Religion and Spiritual Life: ● Saint Louis Empowerment Center (Missouri) ◦ Developed an informal network with African American churches near the Empowerment Center. ◦ Peers attend church-based social activities as well as church services. ◦ New opportunities for housing through this network have opened up.

Leisure & Recreational Activity ● Vermont Psychiatric Survivors • Links peers to community organizations according to the peer’s interests – e.g., bowling, knitting – rather than providing activities in the Center. • Peer mentors introduce a peer to a new community group, provide help until the peer is better integrated, at which point the peer participates more independently.

Civic Life •DBSA-Southern Nevada ◦ Sponsors monthly speaker series on mental health issues in partnership with local library. ◦ Speaker series is open to the public, rather than just being for peers in the peer center.

Civic Life ● HOPE Impact (Wahiawa, Oahu, Hawaii) • Peers attend local neighborhood meetings to advocate for other peers, individuals who are homeless, and veterans with such challenges. • Group founder has a TV show entitled “Hope in Recovery.” ◦ Highlights individuals in recovery. ◦ Plans to interview local officials about mental health policy.

Health Care ● Amarillo Area Mental Health Consumers • Refers peers to smoking cessation classes and diabetic care group in the community rather than in-house classes. • Refers peers to grieving group and hospice education group at a regional hospital. • Encourages senior peers to go to a community senior center rather than identifying only as a peer.

Health Care ● DBSA-Southern Nevada • Participate in large public health fairs in the local area, setting up booths, making contacts, handing out literature. • Sponsor their own outdoor health fair attended by other health care providers. ◦ The fairs have art displays, a car wash, and sometimes basic health screenings. • These activities are based on reciprocity between DBSA and community organizations.

Community Inclusion Strategies Used By Respondents…

Community Integration Strategies Uncovered: Peer mentoring Referrals Partnerships Directing peers to membership-based groups Do-It-Yourself (DIY) Using community networks

Practical Strategies Assess Needs & Priorities. Explore Community Resources. Identify Environmental Barriers. Offer Individualized Supports. Update the Plan.

Practical Strategies: Assess Needs & Priorities Counselor/client assessment of current levels of community integration Expression of interest in progress in varied domains Setting priorities: ◦ Feasibility ◦ Importance ◦ Opportunity ◦ Overcoming counselor/client anxiety

Practical Strategies: Explore Community Resources What already exists for citizens without disabilities? What entry requirements exist? What demands does participation make? Sharing information-gathering responsibility

Practical Strategies: Identify Environmental Barriers Consumer/staff/ community attitudes Regulations and legislation Financial resources Community discrimination

Practical Strategies: Offer Individualized Supports Staff training Accompaniment Community mentors Financial assistance

Practical Strategies: Update the Plan An initial plan: Who What Where When How A plan to review A plan to revise

Peer Specialists in Delaware Bryce Hewlett Executive Director Delaware Consumer Recovery Coalition (302) 689-DCRC www.delawarerecovery.org

Peer Specialists in Delaware Delaware is presently going through a process to develop a credential for peer support specialists This process will yield peer support as a Medicaid reimbursable expense in Delaware Our first training toward certification will begin at the end of this month (November)

Peer Specialists in Delaware Since we do not have a certification program we call peer specialists those who work in peer support roles and have received training to do so The lack of a certification program has made for a great deal of confusion by the state, services providers, and volunteer organizations

Delaware Consumer Recovery Coalition and Peer Specialists All peer-operated services that are a part of the DCRC primarily use peer specialists as employees All peer resource centers use community mental health providers as fiscal agents The directors of these services are peer specialists who serve on the DCRC board of directors

Peer Operated Services Delaware Consumer Recovery Coalition (Statewide – Delaware) The Creative Vision Factory (Wilmington) Rick Van Story Resource Center (Wilmington) Dover Hopes and Dreams (Dover) ACE Center (Seaford)

Delaware Consumer Recovery Coalition http://delawarerecovery.org/

Delaware Consumer Recovery Coalition Approx. 130 individual members Statewide (urban and rural) 4 member organizations Peers Roles: Facilitate mutual-support, self-helps groups in each county in Delaware (4 monthly meetings right now Serve on boards and committees Legislative/systems advocacy efforts

The Creative Vision Factory http://thecreativevisionfactory.org/

Creative Vision Factory Approx. 80 members Urban setting (Wilmington, New Castle County) Peer resource center focused on the arts Peer Specialist Roles: all staff at CVF are peers members of CVF engage the community around them and use the center for community events

Rick Van Story Resource Center http://rickvanstorycenters.org/

Rick Van Story Resource Center Approx. 130 members Urban setting (Wilmington, New Castle County) Peer resource center focused on recovery activities and homelessness Peer Specialist Roles: all staff at RVRC are peers Peers facilitate recovery groups (AA, NA, Hearing Voices, spirituality, etc.) RVRC received a contract through their fiscal agent to be a homeless respite during the winter months

Dover Hopes and Dreams http://www.delaware211.org/Resource?r=3629783

Dover Hopes and Dreams Resource Center Approx. 20 members Sub-urban setting (Dover, Kent County) Peer resource center focused on recovery activities Peer Specialist Roles: all staff at DHD are peers Peers facilitate recovery groups and activities

A.C.E. Peer Resource Center http://www.facebook.com/pages/The-ACE-Peer-Resource-Center/369719023102241

A.C.E. Peer Resource Center Approx. 20 members Urban setting (Seaford, Sussex County) Peer resource center focused on recovery activities Peer Specialist Roles: all staff at DHD are peers Peers facilitate recovery groups and activities

Resources Into the Thick of Things: Connecting Consumers to Community Life: A Compendium of Community Inclusion Initiatives for People with Psychiatric Disabilities at Consumer-Run Programs http://www.tucollaborative.org/pdfs/COMPENDIUM_of_Innovative_CI_Projects_11-29_10.pdf

Resources ● Temple University Collaborative on Community Inclusion: http://www.tucollaborative.org ● National Mental Health Consumers’ Self-Help Clearinghouse: http://www.mhselfhelp.org ● Consumer-driven Services Directory: http://www.cdsdirectory.org ● Institute for Recovery and Community Integration: http://www.mhrecovery.org