Strategies for Engagement of Families & Individuals Receiving Services

1. Strategies for Engagement of Families & Individuals Receiving Services October 9, 1:30 - 3:00 pm

2. Community Care Presenters • Curtis Upsher, MSDirector of Community Relations • Saya Krebs, PhD, MCC, CPSSenior Recovery and Resiliency Specialist Adult and Peer Focused • Wendy LuckenbillSenior Recovery and Resilience Specialist for Children, Youth, and Their Families

3. Rehabilitation and Community Providers Association Conference Welcome & Introduction

4. About Community Care

5. Community Care Overview • Community Care is an organization that consists of HealthChoices members, family members, behavioral health advocates, stakeholders, and community members • All contribute to the mission, goals, and objectives of the organization • Community Care’s primary focus is to address and provide for the behavioral health needs of HealthChoices members

6. Community Care Overview • From its conception, Community Care has maintained a very inclusive process for stakeholder input • Member, family, provider & stakeholder involvement has been a vital component of program development & assessment • Community Care solicits & incorporates input from members, families & other stakeholders through: • A series of member, family & provider advisory meetings • Focused work group & open-forum meetings with its stakeholders & with invested advocacy organizations

7. Studies of Consumer Leadership • Very small number • Little discussion of consumer leadership in BH organizations • Studies focused on how leadership affects the consumers or the specific activity, not on how it changes the organizations the consumers help to lead • Studies have been focused on roles of consumers in specific work, such as satisfaction assessment, rather than leadership • Little discussion of key issues • Value of consumer leadership • How true consumer leadership changes relationships between consumers and others • How is leadership related to recovery

8. Formal Statewide Consumer Networks • One of the New Freedom Commission recommendations • Consumer involvement supports the consumer’s recovery and improves relationships with providers • Six states have implemented to date • Some tension between “grassroots” advocacy, state support, and organizational structure • Important to better understand the goals of these networks

9. Consumer Leadership • Consumer leadership is the ultimate expression of what recovery means • Consumer and providers are partners • Consumers are best experts on treatment (system) planning • Consumers should be driving the decision process, not “protected” from it

10. Program Implementation • Multiple annual, regional, and statewide conferences focused on recovery concepts and tools • Hearing Voices trainings across the state with thousands of participants • Recovery-focused webinars with thousands of participants • Web-based information and tools • Training of Community Care staff as experts in these tools and processes • Learning collaborative development

11. Member Advisory Board • Key part of Recovery Institute • Statewide Community Care group with representatives from each region • Developed with support from external consultants (Laurie Curtis & Pat Deegan) • Goal is to help inform and oversee Community Care recovery initiatives

12. History of Member Advisory Board • Initial consultative agenda to Community Care • Gradual change over past 7.5 years. Now more of an autonomous and self-led group • Creates own agenda with Community Care leadership • Provides feedback on management of the Institute as well as other strategies for consumer engagement and leadership on recovery initiatives

13. History of Member Advisory Board Success of the Board Challenges of the Board • Many board members are now working • Members are fulfilling educational goals • Others are being asked to sit on other boards • Some are being asked to speak and are trained as trainers • Are we listening and really hearing each other • What is our mission – not just a “token” board • Feeling heard. This is not paternalistic. Senior Leadership did really take the time; i.e., retreat

14. References • Newberry, J. (2008, November 4). Consumer Participation on Mental Health Agency Boards: Center for Community Based Research. Retrieved from www.communitybasedresearch.ca. • Mowbray, C., Robinson, E., & Holter, M. (2002). Consumer Drop-in Centers: Operations, Services, and Consumer Involvement. Health and Social Work, 27 (4). • Brown, L., Shepherd, M., et al. (2008). Understanding How Participation in a Consumer-Run Organization Relates to Recovery. American Journal of Community Psychology, 42, 1-2. • Miller, L., Moore, L. (2009). Developing Statewide Consumer Networks. Psychiatric Services, 60, 291-3. • Jacobson, N., Curtis, L. (2000). Recovery as Policy in Mental Health Services: Strategies Emerging from the States. Psychiatric Rehabilitation Journal, 23, 333-341.

15. Never About Us, Without Us!

16. The Message: Your Opinion Matters • How? • Inspire and support families and youth to be full partners in the design, implementation, and monitoring of services at the individual child and administrative levels • Develop concrete strategies to support family and youth partnership • Ask what works and what they need

17. Community Care’s Partnership • Facilitating the ongoing evolution of the behavioral health system toward one that embraces the journey of healing & transformation • Believing that recovery and wellness principles and practices must be informed by authentic input from those who are the focus of the care • Committing to continuous quality improvement through stakeholder partnerships with a focus on outcomes

18. What Organizations Should Do • Ask what works for you, what do you need? • Partner with existing family peer support groups • Offer multiple processes that support family and youth partnership in the design, implementation, and oversight of the services • Surveys, focus groups, and meetings with peers and experts • Offer multiple opportunities for families and youth to access the information and understanding that allows them to participate as partners: • In their own (or child’s) care • In larger oversight processes

19. Learn More • Invite family and youth peer support organizations to train staff on creating advisory structures • PA Families Inc.: pafamiliesinc.org (includes state directory of family groups) • Allegheny Family Network: alleghenyfamilynetwork.org • Mental Health Association in PA: mhasp.org • PA Student Equality Coalition: pennsec.org • Youth Move: www.youthmovenational.org

20. Community Care & Family Involvement • Incorporates family and youth voice through: • Individual satisfaction surveys through BHMCO & state • Tracking & resolution of individual grievance & complaints • Consumer & Family Satisfaction Teams (county contracts) • Quality Improvement Teams (Community Care Community and School Based Behavioral Health Learning Collaborative) • Contract support for family peer support through high fidelity wraparound & local family organizations • Community-level outreach including conferences & parent advisory meetings • Corporate level through member advisory boards [e.g., Community Care Recovery, Families of Child & Youth Members Advisory Board (FAB)]

21. Key Concepts in Authentic Partnership • Partnering with families and youth in advisory work is an opportunity to create an environment of respect and accountability • Build services that are effective & accountable • Enhance what is currently working • Address barriers with authentic dialogue with all stakeholders • Incorporate & support the family & youth voice as a core operating principle & practice

22. Engagement Suggestions for Family & Youth Advisory Work

23. Assure Confidentiality • Reinforce consistently that while you have invited families and youth to give their perspective and advice on issues, you do not expect them to provide specific details of their experience • They are considered experts and do not have to justify or explain what their opinions are based on • They are not asked to share specifics • This includes their children’s diagnosis and treatment or services that a family member has received, or just general personal details that are not usually shared in public • Ask that any personal information members do share is kept within the meeting

24. Be Supportive • Make sure that they’re connected with resources including each other and other family peer support to resolve any immediate and longer term problems they are facing • Give out a sheet with contact info for support resources

25. Offer Hope • Affirm that you are part of a change process that rejects blame and is committed to partnering with them to achieve positive change • Affirm that they are being invited as crucial partners in this transformative work to make things better so that people will have healthier lives in healthier communities

26. Give Perspective • Affirm that people come to human services to do good, but that too frequently they are not given the information and tools to truly achieve the objectives they are responsible for • Affirm again that this is something you are asking them to join in helping to resolve

27. Validate System Experiences • Acknowledge that past and current practice from all the agencies, including JJ, CW, BH, and ED, may have done harm to them • Share that we are evolving effective practice and policies and that it is only within the last decade that we have really been applying evidence and accountability versus local practice and gut feelings to decision making

28. Follow-up • Identify how they can be informed about: • How their input has changed practice & policy • How things will be changing • A variety of ways they can be involved with this change based on their own availability

29. Recognize Member Contributions • Reimburse (stipends and gift cards) for: • Travel • Child care • Time • Other resources including training and conferences, information on how to help their children, etc.

30. Affirm Heroism • Affirm their heroism in living lives with multiple challenges and being willing to participate with you in making things better

31. Final Words • Never about us without us • All partners need equal access to information & training • Families & youth need a continuum of flexible opportunities to partner in the design, implementation & monitoring organizational practice & policy • If it’s not in writing, it’s easy to forget • Work with families & youth to create materials that affirm their partnership & support their effective involvement

32. Member & Parent Advisory Meetings

33. Member Participation Valued • Community Care values member participation in program and service development because we believe that it: • Empowers the member, expedites effective treatment & enables Community Care to assess the quality of care, initiate service & program changes or engage in interventions as appropriate • We target & encourage member, family, parent, provider & stakeholder participation in every aspect of the member’s care through: • Involvement in our advisory initiatives • A number of other external opportunities for stakeholder input

34. Input Opportunities • Community Care holds: • Adult member advisory meetings • Parent advisory meetings • Advisory feedback forums • Targeted clinical populations & provider sites are chosen to solicit feedback from special member populations & families • Advisory feedback forums are held for members who do not ordinarily attend or have difficulty participating in regularly scheduled advisory meetings

35. Input Opportunities • Meetings allow us to: • Solicit specific and focused feedback and input • Provide members with information and educational materials relevant to their recovery and service needs • Meetings also attempt to address and be responsive to the immediate needs, concerns, crises, complaints, grievances, and questions presented by families, parents, and members where possible • Meetings are structured to: • Be goal- and outcome-focused on behalf of the members needs and concerns • Assess Community Care’s quality standards and service proficiencies regarding the adults, children, youth, and families we serve

36. Input Opportunities • Members and their families are solicited to be involved in workgroups to review and participate in the development of policies and procedures related to Community Care’s grievance system • A roster of members or their family representative, or designees are integrally involved in the HealthChoices appeal and resolution process of any formal complaint or grievance • Members and families are key stakeholders in the measurement, assessment, and collection of member satisfaction information • Members are involved in the development and review of satisfaction instruments and results via workgroups and participation on Consumer/Family Satisfaction Treatment survey teams

37. Input Opportunities • Member and parent focus groups are used to gather specific and focused information of interest to Community Care or of interest to members and families regarding programs and service • Community Care actively seeks out and employs talented, competent, diverse managers and employees, including: • Persons in recovery • Welfare to work • Ticket to Work • Other similar programs

38. Advisory Meetings • To address some of the specific concerns and needs of our members and families, the adult member & parent advisory meetings are focused on: • The needs of parents with young children in need of or who have received specialized services for children and youth under 21 years of age • Families and parents of older children – adults over 21 years of age who receive general behavioral health and substance abuse and chemical dependency concerns are encouraged to attend the: • Adult member advisory meeting whose focus attends to the needs of adult members and families with general mental health and substance abuse and chemical dependency issues and concerns

39. Advisory Meeting Structure • Community Care adult member and parent advisory meetings are primarily: • Co-chaired • Facilitated by a peer selected meeting member and the community relations coordinator where member attendance and participation allows • Community Care believes that members as meeting co-chairs are in keeping with Community Care’s efforts to transition the system of behavioral health care to: • More recovery-oriented, member-driven services • Develop meetings that focuses on the primary issues and concerns related to the members’ concerns and interests • One that supports their recovery efforts

40. Advisory Meeting Structure • We believe that having a member co-chair: • Provides a more comfortable experience for all meeting participants • Creates an empowering experience for those involved • The co-chair structure: • Offers enrichment to the meeting • Provides an opportunity for member leadership development • A peer lead meeting also offers members and families input and involvement in the development of our Community Care’s programs and services

41. Structural Goals and Objectives • Member and parent advisory efforts will be used as a vehicle in the company’s efforts to have member feedback efforts be consistent with company goals and objectives of transitioning services and programs to a recovery-oriented system of care • These peer lead advisory structures attempt to offer more dynamic and interesting meetings in an effort to be attractive to HealthChoices members and family members, and be reflective of their needs and concerns

42. Structural Goals and Objectives • Other goals and objectives are to: • Increase adult and parent member advisory meeting attendance and participation • Encourage focused, topic, and workgroup-oriented meetings • Have advisory meetings topics focused on goals and outcome objectives • Use adult member advisory meetings as a local or regional venue for discussing and supporting and promoting recovery for adults with behavioral health needs and concerns • Use parent advisory meetings as a local or regional venue for discussing and promoting resiliency and recovery for children and youth with behavioral health needs and concerns

43. Advisory Meeting Outcome Processes • Institute an advisory feedback loop where meaningful & actionable suggestions, recommendations & major concerns presented by members, family members & youth that will be immediately noted & addressed by appropriate department managers • Actionable advisory suggestions, recommendations & concerns of significance will be recorded on an internal Feedback Loop Form which will be maintained on the company’s shareware program for access by all relevant departments for status & resolution review, including status of company action or response back to member, family, or advisory group by the community relations coordinator or other appropriate company representative • All significant & actionable member & family member concerns & recommendations will be summarized & reported on a monthly & quarterly basis to the director of community relations & senior management via quarterly reports

44. Advisory Meeting Outcome Processes • Quarterly summaries of significant member & family member comments, recommendations & concerns & company response & actions will be presented in the member newsletter & posted online at www.ccbh.com • The community relations coordinator will: • Meet regularly with regional and associate regional directors to strengthen communicative relationships & develop processes for noting, forwarding, action/responses to follow through on member concerns, recommendations & comments • Meet with advisory group members as soon as possible to report company action or response to advisory member concerns, questions &/or suggestions regarding problems presented & service & program improvement

45. Contact Information Curtis Upsher, MSDirector of Community Relations | upsherc@ccbh.com Saya Krebs, PhD, MCC, CPSSenior Recovery and Resiliency Specialist Adult and Peer Focused | krebsse@ccbh.com Wendy LuckenbillSenior Recovery and Resilience Specialist for Children, Youth, and Their Families | luckenbillwl@ccbh.com For more info online, members newsletter, adult member and family meeting dates & general member information:www.ccbh.com