Partners Participatory action research agenda for family-to-family peer support models Federation for Children s s Mental Health Elaine Slaton Cuyahoga (Ohio) Tapestry System of Care Teresa King & Chris Stormann Kentucky Partnership for Families and Children Bill Hobstetter & Vestena Robbins Impact Family Advocacy Project Association for Children s s Mental Health (Michigan) Malisa Pearson & Amy Winans One Community Partnership (Florida) Maria Delmoro,, Beverly Wilkinson & Norín Dollard Presented at 21st Annual Research Conference: A System of Care for Children's Mental Health: Expanding the Research Base. Tampa, Florida, February 25, 2008 This work is funded in part by the Substance Abuse and Mental Health Services Administration s Center for Mental Health Services, the Federation of Families for Children s Mental Health and Macro International. Acknowledgements Gwen Palmer & Shannon Crossbear Federation for Children s s Mental Health Sara Plachta-Elliot Consumer Quality Initiatives (Massachusetts) Peer Support Literature What can we learn from the literature base on peer to peer support? State of the Research Few published studies examining peer to peer support in the context of families of children with serious emotional disabilities Family Associate Approach (Elliott, Koroloff, Koren,, & Friesen, 1998) Connections (Ireys( & Sakwa,, 2006) Keys for Networking (Adams et al., 2006) State of the Research Studies of peer support are more abundant in other areas Adults with serious mental illness Chronic illness Veteran support 1
Types of Peer Support Emotional Support Instrumental Support Informational Support Companionship Support Validation Categories of Peer Support Self-help Groups Internet Support Groups Peer Delivered Services Peer Operated Services Peer Partnerships Peer Employees (Solomon, 2004) Concepts and Theories Social Support Weak Ties Emotional Reactions to Offers of Help Social Comparison Theory Empowerment Experiential Knowledge Theory of Reciprocity Social Learning Theory Contrived versus Natural Supports Key Findings/Results Family presence decreases anxiety for children and parents and increases problem solving and confidence for parents (Miles, 2005) Effective programs are more tailored to the community and setting in which they operate (Barton et al 2002, Hanson et al 2001, Love et al 2002, Vinson et al 2001) Key Findings/Results - continued San Diego SOC finds improved youth functioning and lower parental stress with family supports (Becker and Kennedy, 2003) Three Oregon based sites using a Family Associates model and quasi-experimental comparing with normal mental health services - Find peer supports improve initiation of services (engagement) and a greater likelihood to keep appointments. Modest effects on coping skills but no long term impact on attendance or service completion rates. (Koroloff( Koroloff,, Elliot, Koren,, and Friesen, 1996) Identified Gaps Few studies specific to families of youth with SED What can we learn from other areas of study? How do we increase studies with our population? Matching peers is viewed as important but little guidance offered What strategies can we use to ensure that providers of peer support are matched with the recipient? 2
Identified Gaps Person-Environment Fit How do we know what type of support is needed/desired? How much support, at what intensity, and for how long should it be maintained? What are the outcomes of Individual and Group type supports? What is the impact of community or neighborhood based supports specifically? What is the impact of pairing with facilitators/care coordinators? Identified Gaps Sustainability What organizational, structural, and financial mechanisms support sustainability of peer support services? What is the growth model for family supports and cross-system collaboration with agencies outside of mental health (e.g. juvenile justice, child welfare, drug and alcohol, jobs and family services). Cuyahoga (Ohio) Tapestry System of Care Referral Source New families referred by Care Coordination Partnership Coach Coord. uses Synthesis to see new enrollments Identifying Eligible Families Potential family connects with Coach Engaging Families Coach Coord. & Care Coord. Connect on Coach Svcs for the family Coach & Family Engagement in Services Model Welcome / Orientation meeting Regular Team Follow-up on goal progress & assessment Support Services Continue Support Services begin Matched Coach identified Care Coordinator works with Coach to approve obj., goals & budget. Timeline is set. Goals are presented to the team. Goal setting mtg(s) occur using Info. from the wrap/care plan First Face-to-Face Meeting for Coach & Family Begin data collection T APESTRY SYSTEM OF C ARE Coach Logic Model PROBLEM SUBPROBLEM(S) ACTIVITIES OUTPUT MEASURES OUTCOME MEASURES Short term Long Term Significant increase in Tapestry families requiring service in next 24 months Need to increase the informal support side of Tapestry Goal(s) Build a scalable informal support system mechanism Build on strengths of families and community Empower Lack of funds to hire preferred # of FTE benefited Advocates Lack of informal supports sustainability mechanism Objective(s) Increase d number of Increased number of families successfully served in next 24 months Cost effective Improved Ohio Scales measures Recruit Train Supe rvise Case Manager refers families to appropriate provide support, information, locate services and resources Service initiation and continuance data Service timeliness data Ohio Scales measures hopefulness scale satisfaction scale Focus group data Cost data Increased access Increased service continuance Improved timeliness of service Increased satis faction with services Increased Coach efficacy Improvements in Ohio Scales measures (problem severity, functioning, quality of life, hopefulness, satisfaction, safety, & restrictedness of living) Number of families successfully served Trained cadre of Sustainable induction and training mechanism for Successful scalability of program Demonstrated cost effectiveness Inform system leaders and families of an additional family drive n pathway that is cost effective and a beneficial use of resources. Kentucky Partnership for Families and Children 3
Theory of Change Community Partners understand & value Family-Driven & Youth-Guided SOC Theory of Change & Youth Network Community Partners are trained on Family-Driven & Youth-Guided SOC Trainers are identified Curriculum finalized Project Director compiles curriculum draft & course objectives with youth staff STEERING COMMITTEE AFFIRMS & MONITORS Families & Youth are trained on how to utilize Family-driven & Youth-guided SOC Trainers are trained to utilize curriculum Data elements finalized Evaluation staff compiles evaluation tool draft with Project Director Leadership & structure are in place Families & Youth are identified & trained Curriculum finalized Project Director compiles curriculum draft & course objectives with youth staff Hosting agencies & professionals are invested Partnerships are formed Steering Committee affirms & monitors Families & Youth are utilizing network Evaluation / data collection finalized Professionals are identified & trained Evaluation / data elements finalized Evaluation tool is drafted by evaluation staff with assistance of Project Director KY Medicaid requests & receives CMS approval Regulation is approved Certification is finalized Certification process is finalized C-team will finalize the job description for Family Peer Support Specialist Project Director compiles curriculum draft & course objectives with youth staff Theory of Change Family & Youth Peer Specialist is Medicaid billable Formalized structure for Family Peer Support Specialist Steering Committee provides general support & feedback Leadership academy is finalized and takes place C-team will finalize the curriculum topics / outline & content for position Stakeholders utilize Family & Youth Peer Specialist Certification training takes place Data from certification training collected & reported Data from Leaderships Academy collected & reported E-team will develop evaluation design & instrumentation Evaluation staff review literature & formulates evaluation Family Support Partners One Community Partnership Broward County, Florida System,, cross-system & community What are we doing? School board engagement; training; outreach & education & work with statewide family network / organization Evaluation Logic model Organization / program (2) -outreach to actual & potential referral sources; -recruit FSPs; ; mentor FSPs; ; Education & training of FSPs & support to FSPs Family level Direct services; training; skill building; connections Impact Family Advocacy Project Association for Children s s Mental Health Michigan With whom are we doing it? (3) MH, SA A & Ed. With what fidelity? Staff (FSPs( FSPs), MH staff, teachers & supervisors Families & informal supports outreach; unsolicited requests for information; # contacts; requests for information; Family Café representation To what effect? -# trainings; supervision (nature of); develop FSPs content specialists Families have skills to use information they receive; build a resource network Increase referrals; increase access to services for families; increased exposure at state and local levels -Open lines of communication between case managers and FSPs; self-sufficient staff; represent families (1) families use resource network; Families use information they are given; cost 4
System,, cross-system & community What are we doing? Link to SWFN (ACMH) Develop partnerships with agencies; Ed. Comm. on value of FA support With whom are we doing it? CMH, DHS, Court, Ed., agencies, comm. & cultural centers With what fidelity? Outreach; # of requests for I&R; # of prof.. contacts for family; % of time spent on collab. To what effect? % families receiving FA support; access; respite services; family voice in policy & decision making Logic Model Organization / program Participate in Court meetings; Hiring & ongoing coaching of FAs; Train FAs with agencies, Partner with SOC Orientation, Involvement in prof. dvlpmt. opp. FAs,, Lead Family Contact, ACMH # of PLI s; Supv.. of FAs; ; FA staff meetings; Prof. dvlpmt; ; # of family contacts; Length of FA; # families served Improved partnerships agencies; Sustain contract; Well-trained, independent FAs; ; Develop of FA training & Family Driven Curriculum Family level Coaching & modeling of self-advocacy skills; Leadership; SOC Family Council; Family Involvement & SOC workgroups; Stakeholders Group & Eval. Families, Youth, Foster & Adoptive families, Extended family Families attend PLI & Family Council & present at comm. mtgs &, agencies; Satis.. with FA supports & training self-advocacy skills of families; satis.. with services; knowledge of agencies; Families facilitate PLI s & Family Council; in family members employed in SOC Research & Evaluation Questions What are the administrative structures supportive of family-to-family support Part-time vs. Full-time Geographic factors Rural vs. Urban Internal vs. External contract employees Supervisor Allies within home agency Financing mechanisms Medicaid Child Care Fund Definition of Family Support Intervention vs. support models Optimal frequency and intensity of family-to- family support Optimal duration of family-to-family support Appropriate Outcomes Family Outcomes: Effectively communicates needs & wants Comfortable to disagree with team members Knowledge of child serving agencies involved with Knowledge of parental role in treatment process Actively engaged with service providers Independently attends team meetings Linked to family support sources within community Knowledge of services & supports available to family Increased satisfaction with services Reduced caregiver stress Appropriate Outcomes System Outcomes: Collaboration amongst parent partners and child serving agencies Integration of family driven & youth guided practices within child serving agencies Shared power with families Increased family involvement in individual treatment, system planning, service implementation, and evaluation of child serving systems 5
Appropriate Outcomes Contact us Equitable, sustainable funds allocated to support family-to-family support programs Equitable, sustainable funds to support ongoing training, development, and evaluation of family-to-family support programs Florida, Broward County Maria Delmoro medelmoro@bellsouth.net Norín n Dollard dollard@fmhi.usf.edu Beverly Wilkinson Beverly@mhabroward.org Kentucky Bill Hobstetter Bill.kpfc@fuse.net Vestena Robbins Vestena.robbins@ky.gov Michigan Malisa Pearson acmhmalisa@aol.com Amy Winans ajwinans@aol.com Ohio Teresa King tking@cuyahogacounty.us Chris Stormann cstorman@kent,edu Elaine Slaton Eslaton@ffcmh.org 6