Saratoga Springs December 1, 2010

1. Informational Briefing on a New Study withHCBS Waiver Programs: Improving Family-to-Family Services in Children’s Mental Health Saratoga Springs December 1, 2010

2. Presenters • Kimberly E. Hoagwood, Columbia U • Serene Olin, NYSPI • Mary McHugh, OMH • Geraldine Burton, NYSPI • Nancy Craig, OMH • Anne Kuppinger, Families Together of NYS

3. Additional Collaborators* • Project Director: • Mary A. Cavaleri, NYSPI • Research Assistant: Jennifer Ball, NYSPI • Additional Collaborators: • Jennifer P. Wisdom, NYSPI • Naihua Duan, NYSPI • Charles Glisson, U of TN • Sue Marcus, NYSPI • Mary M. McKay, Mt. Sinai School of Medicine • *Funded by: National Institute of Mental Health

4. Outline of Presentation • Overview of study: Kimberly Hoagwood • OMH initiatives in family support: Mary McHugh • Credentialing and training in family support: Anne Kuppinger • Perspectives on the value of research partnerships from family advocates: Nancy Craig and Geraldine Burton

5. National Picture • Family-to-family (i.e., peer-delivered) services in children’s mental health are gaining national attention • National Federation of Families credentialing project • 137 chapters • NAMI Basics curriculum: 12,000 parents have participated in year 1 • ½ dozen states making it a billable service • Important service model with little research data to document its content and impact on families and systems (Hoagwood et al., 2010 review)

6. Summary of Research Findings on Family Support • Reduces stigma and distrust by improving communication (Linhorst & Eckert, 2003) • Improves activation in seeking care (Alegria et al., 2008) • Improves self-efficacy– i.e., active participation in decision-making (Heflinger & Bickman, 1997; Bickman et al., 1998) • Improves knowledge and beliefs about children’s mental health and this is associated with use of higher quality services for children (Fristad et al., 2003; 2008) • Almost no rigorous studies thus jeopardizing long term viability 5

7. Biggest Research Gaps • What is the content and structure of family-to-family services: components, staff models, attitudes/beliefs of staff. • Is it effective—Does it have a positive impact on parents, youth, and on systems (e.g., costs, efficiencies). • What are the best models for integrating family peer advocates into service programs. • How can family support services be used to further the OMH goal of clinic restructuring

8. OMH Perspectives: Reshaping Policy—Mary McHugh, OMH • From an emphasis on ‘family engagement’ to ‘family-driven services’. • A focus on developments in both the family support movement and research regarding the delivery of high quality, effective family support services. • To guide these policies, the Division of Children and Families includes Parent Advisors who are intricately involved in our planning and program operations.

9. Investing in Family Support Services • We invest over $14 million state and federal dollars in the delivery of family support services. • We support Family-run and provider-operated family support programs that deliver individual and group peer support, referrals and linkages, advocacy, skill development, care coordination, respite, family recreation and basic supports. • We support strategies to improve partnerships between mental health programs and family run family support programs

10. Three Level Approach to Improving Family Support in Mental Health System

11. Systems not Services “You can’t expect an individual service provider to transform their practice on their own; it is much too expensive and complex. It is easier to transform practices when they are part of a system and achieve economies of scale”. Ed Schor M.D., The Commonwealth Fund

12. FTNYS Perspective: Training/Credentialing of Family Peer Advocates: Anne Kuppinger

13. Family Advocates Perspective: Geraldine Burton • What is research? • The right question • The right time • Gathering of information

14. Who can do research?Why is research important? • Parents/caregivers • Scientist • Scholars • Students • Teachers • Helps to inform, educate and enhance what we already do.

15. What is it like to work in research as a Family Advocate? • Opportunity to work in collaboration and partnership with the community and other researchers • Opportunity to learn from each other • Opportunity to share your experience • Continue to work with families

16. Primary purposes of the study • To examine the process and content of services provided by family peer advocates within 25 Waiver programs • To examine the social organizational context within which family support is delivered • To understand how best to enhance the quality of family support services

18. Improving Family to Family Services: Phase I Examine the structure, process and content of family support services

19. Study Details: Who Are We Seeking To Enroll? • 25 waiver programs within 6 to 10 mental health service agencies. • 3 to 5 staff per waiver program (e.g., supervisors, ICCs, family peer advocates, skill building staff, others).

20. What does participation involve?

21. Standardized Parent Walkthrough • Standardized Parent (SP) will participate in first meeting with relevant Waiver staff • SP will participate in a face-to-face appointment with FPA • At the end of the Walkthrough, the family peer advocate will complete an interview

22. What will we do with the information collected in Phase 1? • Describe variations in process and content of family support services across Waiver programs • Identify what family peer advocates do • Describe how the social-organizational context of Waiver programs relate to indicators of service quality • Identify how agencies can support what family peer advocates do

23. Phase II Examine organizational strategies to improve the integration of family support within agencies

24. How To Get Involved • Complete the application or contact us: • Kimberly E. Hoagwood (Principal Investigator) hoagwood@childpsych.columbia.edu • Mary Cavaleri (Project Director) cavaleri@pi.cpmc.columbia.edu • Jennifer Ball (Research Assistant) balljenn@childpsych.columbia.edu