1. Role of Families in Title V and Family-Professional Partnerships Presented by Lynn Pedraza, Bev Baker, and Beth Dworetzky AMCHP Family Scholars December 20, 2012

2. Introductions Assistant Director Catalyst Center: Improving Financing of Care for CYSHCN Bev Baker Co-Director Family Voices National Center for Family /Professional Partnerships Beth DworetzkyLynn Pedraza Executive Director Family Voices

3. Objectives Meet two National Centers A little History Explain how policies contribute to FPP* Explain how FPPs contribute to systems change Describe factors that contribute to successful FPPs from both sides Describe the responsibilities of families and professionals in FPP * FPP = Family-Professional Partnerships

5. Funded by the Division of Services for Children with Special Health Needs within the federal Maternal and Child Health Bureau, Lynda Honberg, Project Officer A project of the Health and Disability Working Group at the Boston University School of Public Health The National Center dedicated to the MCHB outcome measure: “…all children and youth with special health care needs have access to adequate health insurance coverage and financing.”

6. Catalyst Center: What we do We work with states (Title V, Medicaid, legislators, others) and stakeholder groups (family leader organizations, etc) to: Provide technical assistance on health care financing policy and practice Conduct policy research to identify and evaluate financing innovations Create resources (educational products like policy briefs, tutorials, and webinars) Connect those interested in working together to address complex financing issues

7. Catalyst Center: What we don’t do No direct advocacy or lobbying No benefits counseling for individual families Excellent Resources oCatalyst Center Family Resources Page ohttp://hdwg.org/catalyst/resourceshttp://hdwg.org/catalyst/resources oNational Center for Family ♥ Professional Partnerships oLocate the Family-to-Family Health Information Center in your state ohttp://www.fv-ncfpp.org/http://www.fv-ncfpp.org/

8. www.familyvoices.org  We are... a national family-run non-profit organization founded (1992) by families of CYSHCN to activate family roles in health care  Our mission is... to achieve family-centered care for all children and youth with special health care needs and/or disabilities  Through our work, we... Provide families with tools to make informed decisions, Encourage self advocacy/empowerment in youth/young people with disabilities Build partnerships among families and professionals Advocate for improved public and private policies Serve as a trusted resource on health care

9. www.familyvoices.org  Our Projects: NCFPP: Building family/professional partnerships www.fv-ncfpp.org and wellness for all children, including CYSHCN www.brightfuturesforfamilies.org KASA: Encouraging self advocacy/empowerment in youth/young people with disabilities www.fvkasa.org  Our Connections with Families & Professionals: Website Facebook Twitter: Materials, social media, news alerts, e-newsletters Memberships: Individual, organizational, State Affiliates Family Stories: Real-life policy impacts

10.  FV-NCFPP is the National Center dedicated to the MCHB outcome measure: families will partner in healthcare decision-making for CYSHCN at all levels. We Created the concept of F2F HICs and pushed for their funding Provide peer mentoring, support, training, TA to family leaders in every state Promote partnerships between family and professionals by providing tools, opportunities, and mentorship “The NCFPP staff have provided valuable guidance and direction and are committed to developing future leaders.” “Cultural broker guide is an excellent resource, gives great ideas; we share with other family organizations and CBOs.”

11. FPPs: A Definition The Relationship between families and providers where there is  Two-way collaboration and support  Mutual trust and respect  Equality in the relationship

12. The way things were… 1950’s – 60’s  Parents presumed to lack the knowledge & skills to be decision-makers  Decisions made primarily by providers  Families offered therapy to learn to “cope” with child’s disability 1960’s – 70’s  Parent “training”  Parents as therapists to maximize opportunities for interventions 1970’s – 80’s  Initiatives to work toward family-centered models of care  Recognition that families “know their child best,” have valuable input that contributes to improved outcomes  valued partners

13. Systems change due to influence of Laws & Policies Federal Special Ed Law passed, 1974: families and special educators work together to pass PL 94-142 (became IDEA); (PA passed first state special ed law) Roles for families: “parent training and information centers” in every state help families learn their roles in in special education; families meet across special needs (70’s) Early Intervention Law/regulations (80’s): expanded roles for families in planning their own child’s care; roles in ICCs at the program and policy level

14. Families influence policy changes in healthcare Patient’s Bill of Rights/Informed Consent: patients need access to information, decision making roles Tech Dependent children come home – Home and Community Based Services waivers (Katie Beckett) Hospital visiting hours change to allow families 24 hour visiting Design of facilities take in to account family needs Hospital Advisory Committees/ Family Resource Centers created Families as Faculty – in grand rounds, in service training, medical schools and pediatric provider training programs, public health programs. Matching families to healthcare students for in home experiences of daily life

15. Standing on the shoulders of giants Took a “deficit-based, categorical, medical model of care”  “consumer- driven, family-centered and strength- based”

16. FPP in Title V 1982: Surgeon General’s Workshop on “Children with Handicaps and Their Families.”  Developed strategies for comprehensive services needed by CYSHCN;  Addressed the challenges and burdens of the families w/CSHCN  Stimulated development of community resources 1987: Surgeon General's Report on Children with Special Health Care Needs  Focus on Family-Centered, Community-based, Coordinated Care

17. Family-Centered Care & Family Involvement 1989: OBRA* '89 & state requirements for Title V funding:  Annual reporting  Needs assessments  Public input  When states report on Title V activities, there’s a measure for Family Involvement in Title V CYSHCN programs.  See Snapshot for each state’s score at https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/SnapShotMenu. aspx. https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/SnapShotMenu. aspx  Visit http://www.hdwg.org/catalyst/online-chartbook/ to compare states to each other or to National Average.http://www.hdwg.org/catalyst/online-chartbook/  Focus on family-centered, community-based, coordinated care. *OBRA = Omnibus Budget Reconciliation Act

18. Title V Today Has undergone legislative and organizational changes No longer a program to “extend and improve….services for locating crippled children and for providing medical, surgical, corrective, and other services and care, and facilities for diagnoses, hospitalization, and aftercare for children who are crippled…” Recognizes this will not happen unless family voices are heard and families are at each table in which decision making occurs. Thus, the involvement of families is a key indicator of systems development.

19. Nothing about us without us 1990’s – present  FPP and FCC as the “standard” of care; ACA  Idea that no policy should be decided without the full and direct participation of members of the group(s) affected by that policy  This involves all marginalized groups – without regard to disability, race socio-economic status

20. FAMILY PARTICIPATION IN CSHCN PROGRAM Family members participate on advisory committee or task forces Financial support offered for parent activities or parent groups. Family members are involved in MCH Block Grant Application process. Family members participate in in-service training Family members hired as paid staff or consultants Family members of diverse cultures involved in all of the above activities Scale: 0 = Not Met 1 = Partially Met 2 = Mostly Met 3 = Completely Met Scoring: best possible = 18 See all scores Catalyst Center Chartbook http://hdwg.org/catalyst/state-data-chartbook Family Involvement in Title V

21. FPPs - Are we there yet? 2001/022006/052009/10 57.557.470.3 National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 12/16/12 from www.childhealthdata.org.www.childhealthdata.org CSHCN whose families usually or always feel that they are partners in decision making around issues important to their child's health.

22. Factors that hinder partnerships? Attitude/Belief that “we already do that” Concerns about confidentiality Resistance to change Lack of resources – time, money Lack of trust Communication: Complexity of listening, avoiding jargon, articulating a purpose Fear Culture Hispanic CSHCN/ Spanish primary household language 59.5 Hispanic CSHCN / English primary household language 65.6 Non-Hispanic CSHCN71.6 CSHCN whose families are partners in shared decision-making National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 12/18/12 from www.childhealthdata.org. www.childhealthdata.org

23. Describe factors that contribute to successful Family and Professional Partnerships from both sides Communicate & share information openly and objectively Make decisions together Be willing to negotiate Acknowledge each other’s skills and expertise Be inclusive Respect each others’ points of view Learn from each other Develop a shared agenda Create action items and timelines Use evidenced-based research (published articles, data, family stories to make the case for change Evaluate Share your successes Factors that contribute to successful Family and Professional Partnerships

24. Other factors that contribute to successful partnerships Commitment from the top Identification of consumers to participate/ongoing support in their roles Critical mass of participants; not a solo representative; commitment over time; mentoring Thorough, transparent planning process; proactive creative thinking about challenges and solutions Clear articulation of value from each perspective Financial support to consumer groups and consumers

25. Resources National Responsible Fatherhood Clearinghouse Online Library http://basis.icfi.com/cwig/ws/library/docs/fatherhd/SearchForm http://basis.icfi.com/cwig/ws/library/docs/fatherhd/SearchForm National Center for Cultural Competence http://nccc.georgetown.edu/ Family Voices Title V toolbox for Family Participation http://www2.familyvoices.org/projects/toolbox/ The Seven Challenges Workbook — Communication Skills for Success at Home & Work http://newconversations.net/http://newconversations.net/ (English, Spanish, Portuguese) Partners in Policymaking http://www.partnersinpolicymaking.com/online.html

26. Resources from the Catalyst Center Catalyst Center www.catalystctr.org  Dancing with Data training http://hdwg.org/catalyst/data  Publications and more section of website http://hdwg.org/catalyst/publications  Enewsletters http://hdwg.org/catalyst/publications/pastissues  Chartbook state pages http://hdwg.org/catalyst/state-data-chartbook

27. Resources from the NCFFP Two reports on partnerships with CSHN programs Families in Program and Policy FiPPs CSHCN Report Families in Program and Policy FiPPs MCH Report) http://www.familyvoices.org/work/title_v?id=0012

28. Partnerships – the next generation

29. Discussion & Questions

30. Contact Information Bev Baker Co-Director National Center for Family-Professional Partnerships 207-459-1009 bbaker@familyvoices.org www.fv-ncfpp.org/ Beth Dworetzky Project Director The Catalyst Center BUSPH 617-638-1927 bethdw@bu.edu www.catalystctr.org We look forward to meeting you at the AMCHP conference in February! Lynn Pedraza Executive Director Family Voices 1-888-835-5669 lpedrazza@familyvoices.org www.familyvoices.org