The Roles of Peers Youth & Family Stephanie Orlando, Director of YOUTH POWER!, Families Together in NYS

History Much about the history of “peer support” is still being uncovered through research currently being done on the national level. We know that in the 1850’s people in NY’s Utica State Lunatic Asylum wrote about the support of “fellow feeling” people in The Opal, a “Patient” edited newsletter. In recent decades there has been a movement of consumers and survivors that have worked to ensure there are peer roles in mental health services and supports.

Family Peer Support In the 1980’s a movement for increased family involvement on all levels of service began to gain momentum. Family support groups were developing all over the country and the state. In 1991 the NYS Office of Mental Health hired 5 regional parent advisors In 1995 a grassroots NY statewide parent support network incorporated as Families Together in New York State.

Youth Peer Support & Involvement in New York In the early 1990’s the “first youth peer support and advocacy groups” known to this generation. The experiences and accomplishments of those groups blazed the trail to a larger youth movement. In the late 1990’s the Office of Mental health began statewide youth involvement initiatives including the Youth Advisory Council (YAC). Youth Peer support groups and Systems Advocacy exists all over the state and are networked through YOUTH POWER! a statewide Network of young people with disabilities and/or social-emotional challenges In 2010 Regional Youth Partners will be hired by YP! to assist in supporting and networking youth peer advocacy groups

The President’s New Freedom Commission Calls for Inclusion In 2003, The President’s New Freedom Commission on Mental Health called for the complete inclusion of consumers and family members as providers, advocates, policymakers, and full partners in creating their own plans of care.

 Develop a better understanding of the needs and issues of the youth population they serve  Develop systems that are more creative and better meet the needs of children and families  Generate fresh and innovative ideas of young people  Bring clarity to the mission of an organization or agency  Enhance the commitment and energy of adults  Gain a different perspective of youth experiences with multisystem involvement  Increase its understanding of how young people view the world  Know what works and does not work based on real world youth experience  Interact with youth to overcome youth culture stereotypes  See the positive things youth have to offer Youth Involvement: Benefits to Others Adapted From: Technical Assistance Partnership “Youth Involvement in Systems of Care: A guide to Empowerment”, January 2005

 Develop confidence through completing empowering tasks and feeling heard  Make friends and have a peer support network  Create a better system that will help themselves and others  Understand the community and government in a different way  Develop leadership experience and various other skills that will be useful throughout life  Build connections and professional resources Youth Involvement: Benefits for Youth Adapted From: Technical Assistance Partnership “Youth Involvement in Systems of Care: A guide to Empowerment”, January 2005

Optimizing Youth Leadership From: Technical Assistance Partnership “Youth Involvement in Systems of Care: A guide to Empowerment”, January 2005

Optimizing Youth Leadership From: Technical Assistance Partnership “Youth Involvement in Systems of Care: A guide to Empowerment”, January 2005

Foundations: CASSP Principles 1983 for the Child and Adolescent Service System Program (CASSP), envisioned as a comprehensive mental health system designed for children, adolescents and their families. CASSP is based on a well-defined set of principles for mental health services for children and adolescents with or at risk of developing severe emotional disorders and their families. These principles are summarized in six core statements.

CASSP Principles Child-centered : Services meet the individual needs of the child, consider the child’s family and community contexts, and are developmentally appropriate, strength- based and child specific. Family-focused : Services recognize that the family is the primary support system for the child and participates as a full partner in all stages of the decision-making and treatment planning process. Community-based : Whenever possible, services are delivered in the child’s home community, drawing on formal and informal resources to promote the child’s successful participation in the community.

CASSP Principals Multi-system : Services are planned in collaboration with all the child-serving systems involved in the child’s life. Culturally competent : Services recognize and respect the behavior, ideas, attitude, beliefs, customs, language, rituals, ceremonies and practices characteristic of the family’s ethnic group. Least restrictive/least intrusive : Services take place in settings that are the most appropriate and natural for the child and family and are the least restrictive and intrusive available to meet the needs of the child and family.

The Engine of Change Families and Youth Family driven and youth directed care Provider and system driven From Shifting Gears to Family-Driven Care – Federation of Families 2006

PARADIGM SHIFT: The Changing Role for Families and Youth Provider DrivenFamily Driven Source Of Solutions Professionals and agencies Child, family, and their support team RelationshipChild and family viewed as a dependent client expected to carry out instructions Partner/collaborator in decision making, service provision, and accountability OrientationIsolating and “fixing” a problem viewed as residing in the child or family Environmental approach enabling the child and family to do better in the community AssessmentDeficit orientedStrengths based From Shifting Gears to Family-Driven Care – Federation of Families 2006

Provider DrivenFamily Driven PlanningAgency resource based Individualized for each child and family Access To Services Limited by agencies menus, funding streams, and staffing schedules Comprehensive and provided when and where the child and family require ExpectationsLow to modestHigh OutcomesBased on agency function and symptom relief Based on quality of life and desires of child and family PARADIGM SHIFT: The Changing Role for Families and Youth From Shifting Gears to Family-Driven Care – Federation of Families 2006

Youth Involvement in Organizations  Quality and Satisfaction  Hiring Practices & Staff Evaluations  Environmental Design  Social Marketing  Outreach and Engagement  Program Design, Implementation and Oversight  Evaluation  Youth Trainers  Youth Employees  Youth Peer Advocates & Educators  Youth Advisory Committees  Youth on Standing Workgroups, Committees, Taskforces, etc.  Youth/Young Adults Serving on Board of Directors

Schedule meetings at a time youth can attend Provide information Help prepare youth before the meeting and follow up to answer questions after Provide feedback and information on next steps Support during the meeting Create clarity on role and expectations of everyone Address possible transportation issues Consider/offer stipends & incentives Recognize contribution Making Meetings Accessible to Youth

Youth Advocacy & Engagement Youth Advocates can be change agents that educate & inform to improve the environment and culture of a hospital. Their experience is a valuable asset. They are a partner to ensure quality of care. They provide a unique perspective that is crucial in a person centered approach to care.

Peers can serve as role models, communicators, mediators, advocates, teachers and legal protectors Peers provide support from a perspective of experiential rather than professional authority (Borkman, 1975) First hand experiences provide unique insights and analyses The Important Roles Peers Have in Inpatient Settings: Adapted from “Peer Roles in Inpatient Settings A Core Strategy ©” Module originally created by Bluebird, Jorgenson, Lane; revised by Bluebird, 2008

Self-help, peer support, and self- advocacy are recognized internationally as components of wellness, recovery, and treatment Peers understand the need for reform and often have the initiative to begin the task of creating new approaches to care Peers involved in a meaningful way at all levels of service promotes a positive organizational culture shift. The Important Roles Peers have in Inpatient Settings Cont’d Adapted from “Peer Roles in Inpatient Settings A Core Strategy ©” Module originally created by Bluebird, Jorgenson, Lane; revised by Bluebird, 2008

First hand experiences dealing with psychiatric disabilities equip peers with extensive practical knowledge and information in a way professional training cannot. (Solomon, 2004) Peer relationships often incorporate friendship and encouragement; hope for recovery! Peer Roles in Inpatient Settings: Delivering Services Differently From “Peer Roles in Inpatient Settings A Core Strategy ©” Module originally created by Bluebird, Jorgenson, Lane; revised by Bluebird, 2008

Peers Have Helped to Create… Alternative Dispute Resolution/Mediation Communication Strategies WRAP Wellness Recovery Action Plan (Develop Daily maintenance plan, identify triggers, crisis plan) Recovery through the Arts (a vehicle for creative self expression, and personal empowerment) Comfort Rooms (Creating a home like comforting environment) (Adapted from the Roadmap to Seclusion and Restraint Free Mental Health Services SAMHSA 2005)

Peers Have Helped to Create… Drop In Centers (a central place for peer support/self help, advocacy, information and resources, building on peers capabilities, talents and promoting wellness. Peers run and peers develop and provide alternatives to treatment including making friends and socializing) Services Animals - Use of animals for emotional support and healing of trauma Prime Directive/Choice Thru Voice Meditation – Grounding Techniques (can assist with dealing with feelings from trauma i.e. flashbacks) (Adapted from the Roadmap to Seclusion and Restraint Free Mental Health Services SAMHSA 2005)

Independent Voice There has been a continuing request to increase independent peer & family advocates in Mental Health Services. Independent means that the advocate works for a peer run organization and is contracted with the hospital or mental health service. There are models to utilize for independent Peer Advocates in inpatient settings.

Why Independent? Builds trust with the young person and family members. Continuous training, supervision and support from experienced Peer Advocates Peer support that is needed Advocate to Advocate Cross-systems & community based

Training All advocates must be trained in a variety of skills so that they can best assist the people they are working with. Training for Hospital staff and administrators is important so that everyone understands and values the role of the advocate

Some questions to ask are: –What is it going to mean to your organization/community? –What is the level of commitment? Is everyone on board? –How comfortable is the organization with youth speaking up? Would adults feel comfortable serving on committees, workgroups, etc. with youth as equal partners at the table? –What will the organization do with the input you receive? Will you take action? Evaluate Your Readiness

Building places of hope, resiliency, and recovery Together we can help families to get the support the need with the dignity and respect they deserve.

For more information on Youth and Family Peer Support & Involvement Contact Families Together In New York State & YOUTH POWER! Toll free: