Partnerships With Families : Federal, State and Local Partnerships with Family-to-Family Health Information Centers

1. 2005 Partnership Meeting Partnerships With Families:Federal, State and Local Partnerships with Family-to-Family Health Information Centers Diana Denboba, Maternal and Child Health Kathy Rama, Centers For Medicare and Medicaid Services Nora Wells, Family Voices, Inc. Josie Thomas, Parent’s Place of Maryland/Family Voices Dara Howe, Family Voices of Tennessee

2. Partnerships with Families:HRSA F2F Centers Why? • Parents Helping Parents, 1997 • Other families most helpful • Brandeis University/Family Voices, 1999 • Parents want to be informed decision makers • Access accurate, easily understood information • Robert Wood Johnson, 1999 • Formally organized and staffed with paid parents

3. Partnerships with Families:HRSA F2F Centers • 2010 Agenda • Core Outcomes: Families will partner in decision making at all levels. • Core Values: Family-Centered Care, Family/ Professional Partnerships, Cultural Competence • President’s New Freedom Initiative • Reduce barriers to community living for people with disabilities • National Survey for CSHCN • Only 57% of families with CSHCN report they participate in decision making and are satisfied with services they receive • ½+ poor families report receiving care lacking at least one component of family centered care; 47% of Hispanic & 43% of non-Hispanic Black families

4. Partnerships with Families:HRSA F2F Centers • State-wide, family-run centers: • Develop and disseminate needed health care and related information to families and providers • Provide education and training opportunities for families and providers • Collect and analyze data related to project activities, family and system impact and the Healthy People 2010 agenda for CYSHCN • Become a community of learners by linking with community and state partners, Family Voices and CMS F2F Centers

5. Partnerships with Families:HRSA F2F Centers • State-wide, family-run centers: • Have a plan for sustainability after grant funding • Integrate and promote the philosophy and practices of family-centered care, family/professional partnerships and cultural competence. • Six Centers • CA, FL, ME MN, TN, VT (IA) • 2002-2006 2.1+ million

6. Partnerships with Families:HRSA F2F Centers Click image to begin Click here to continue

7. Partnerships with Families:F2F Centers • Commonalities between HRSA and CMS that support a partnership • New Freedom Initiative • Systems Change/Community • Family Directed • Self Direction/Transition to Adult Life

8. Partnerships with Families:CMS F2F Centers • CMS Funding of Family to Family Centers • 2003 – 2005 29 Grantees $4.5 mil • Real Choice Systems Change grants funding • Intended to support people with disabilities in the community

9. Partnerships with Families:CMS F2F Centers

10. Partnerships with Families:CMS F2F Centers • CMS Partnership with HRSA • CMS F2F grants began due to HRSA’s initiative –CMS and HRSA have maintained a close connection • Technical Assistance topical conference calls are open to all grantees, whether funded by CMS or HRSA • CMS research papers include HRSA and CMS grantees

11. Partnerships with Families:CMS F2F Centers • Partnering among grantees • All grantees share experiences on joint conference calls, listserv, email, etc. (e.g. developing parent networks, improving attendance at training) • Grantees share products they have developed (e.g. training packages, brochures, newsletters, legal forms, website information, disaster planning) • Grantees provide one-on-one assistance to each other

12. Family Voices: Connecting F2F Centers • 35 states now have F2F HICs through funding from MCHB and CMS • Family Voices, through an MCHB funded National Center on Family/Professional Partnerships and sub contracts with CMS grantees, provides TA and a variety of communication vehicles/opportunities to connect these F2F HICs in a national network of peer support

13. Family Voices: Connecting F2F Centers • F2F HICs build on a long history of family leadership and activism– disability specific, special ed, early intervention, parent to parent, state wide advocacy efforts • F2F HICs focus on health issues – assisting families and the professionals who serve them to become informed, active partners in improving care at both the individual and systems level

14. Family Voices: Connecting F2F Centers • F2F HICs believe partnerships are the essential building blocks of improvement • In order to partner, family members across the age span (children, parents, young adults, adults, elderly) must have the information and knowledge to participate in their own care, and to contribute to system level discussions

15. Family Voices: Connecting F2F Centers • True partnerships only occur when power is shared • Funding F2F HICs is a contribution to building a power base of family partners: children, youth, parents, adults • Some F2F HICs are located within family agencies that operate with blended funding from a variety of agencies, while other F2F HICs operate primarily on the federal funding they receive from their F2F HIC funding • All connect and share with each other through F2F portal, list serves, Topical conference calls, meetings, conferences, joint activities

16. Family Voices: Connecting F2F Centers F2F HICs Receive Many Requests for Assistance

17. Family Voices: Connecting F2F Centers F2F HICs Provide Assistance to Families and Professionals

18. Family Voices: Connecting F2F Centers • Information and Assistance Provided • F2F HICs report topics of information and assistance provided around a broad range of topics • F2F HICs report receiving the most requests for information and assistance on health care financing and community services, as well as requests on parent to parent, specific disability, transition, partnerships, advocacy, etc. • F2F HICs estimate that approximately 36% of all families they serve are from underserved communities including socially and economically diverse communities and underserved geographic areas

19. Family Voices: Connecting F2F Centers “…Cultural disparities tend to be a big issue for families in rural areas that are low income, and that are racial/ethnic minorities. These families and their children are falling through the cracks of our health care system” NV F2F HIC

20. Family Voices: Connecting F2F Centers F2F HICs Report Problems with Health Care Financing by Program

21. Family Voices: Connecting F2F Centers “The families that are reporting problems with Medicaid are reporting a number of issues…We are finding that families are being denied a number of services…when they would have been provided those services a year ago….” VT F2F HIC

22. Family Voices: Connecting F2F Centers • Family leaders report impact of their activities within their states • Family leaders working with a Medicaid Agency identified streamlined way for parents to share information about their primary care provider when MCOs in the state changed • Family activism helped stave off cuts to Title V programs • Family leadership helped to involve Chinese speaking families in program and policy activities • Family leaders impacted the development of waivers, immigrant eligibility for programs, assessment tools for Medicaid long term care • Families’ e-mails and letters had a significant impact on proposals to charge hefty premiums for Medicaid waivers

23. Family Voices: Connecting F2F Centers • F2F HICs Reach out to Families and Professionals • 710,00 newsletters • 180,000 handouts • 69,686 people reached on listservs • 14 million website hits • 327,070 people reached in over 6,300 meetings, workshops, conferences, etc.

24. Maryland’s Experience • Parents’ Place of Maryland • PTI • CMS-funded F2F • MD Family Voices • MFAI • Founded in 1990 • Focus on health since 1997 • Services to families

25. Maryland’s Experience • Each year: • 3500 families - education • 1000 families – health • 85-105 workshops each year • Leadership training programs • Informational materials – fact sheets, newsletters, etc. • More than 5000 collaborations/partnerships at the local, state, and federal levels

26. Maryland’s Experience • Partnerships • Title V CSHCN • Medicaid • Medicaid MCO • Local communities

27. Maryland’s Experience • Title V CSHCN • Redesign • Ongoing funding for MD Family Voices activities • Providing match for activities funded by others • Parent education and support, program evaluation, focus groups, surveys, data bases

28. Maryland’s Experience • Medicaid • One day per week • Policy formation • SNCAC, MAC, Waiver, EPSDT • Review materials from parent perspective • MCO Special Needs Coordinators • 3 Examples • MCO enrollment cards • Therapeutic behavioral aides • Newborn hearing screening

29. Maryland’s Experience • Medicaid MCO • We created a plan . . . • Resource for MCO parents • Outreach to members with SHCN • Participate CSHCN team meetings • Attend CAB meetings • In-service case managers & CAB • Develop materials for parents • What really happened . . .

30. Maryland’s Experience • Local community • No dental care for CSHCN in rural area • Met with partners, obtained commitments & location • Identified dentist & other providers • Developed & disseminated marketing materials • Recruited & supported parents • Organized clinic day • Working to find ways to increase reimbursement rates

31. Maryland’s Experience • What we’ve learned: • Not everyone is ready • Takes time to build relationships • Need commitment from the top • Need resources & funding • What’s in it for me? • We can do things you can’t .

32. Tennessee’s Experience

33. Tennessee’s Experience • Family Voices of Tennessee (operates as a program of the Tennessee Disability Coalition) • Family Voices affiliation since 1993 • Funding sources: • TN Disability Coalition • MCHB> F2FHIC • SIG> TN Dept. of Education contract • UNHS> TN Dept. of Health contract • LEND> Vanderbilt Univ. contract

34. Tennessee’s Experience • Services to Families • Employed F2F parent staff since 2002 • 1-to-1 assistance to 838 families (7/04 – 6/05) • >50% families are under-served/under-rep. • Informational materials – fact sheets, topical brochures, newsletter, listserv • 5 training modules

35. Tennessee’s Experience • Key Collaborators – F2FHIC • Title V CSHCN • Vanderbilt University School of Nursing • TN Voices for Children

36. Tennessee’s Experience • Title V CSHCN • F2FHIC comprehensive family survey • Mailing to @ 6,000 CSHCN program families • Vanderbilt U. School of Nursing • F2FHIC survey design TA and data analysis • Online version of the family survey (accessed directly via weblink from half dozen agencies’ websites) • F2FHIC family focus group research • Journal articles & presentation at professional conferences • F2FHIC program evaluation • Tennessee Voices for Children • Videoconference trainings on children’s mental health

37. Tennessee’s Experience • Other F2F partners • UCEDD> Univ. of TN • Vanderbilt University • LEND> Med Center • UCEDD> JFKennedy Ctr. • Children’s Hospital • State Genetics Program • Part C/Early Childhood • State Dept. of Ed> SIG • EMSC

38. Tennessee’s Experience • Medicaid/TennCare Partnerships • EPSDT outreach/education • Training video contract> Cummings grant/THCC • Videoconferences> TN Dept. of Transportation • TennCare & Children Workgroup • ‘Policymakers’ annual conference • RWJF> Covering Kids coalition/THCC • Spenddown videoconferences/TN Justice Ctr. • Medical Neccessity information campaign

39. Tennessee’s Experience • What we’ve learned: • Partnerships require ongoing care • You can’t take anything or anyone for granted • Family involvement ‘doesn’t come cheap’ • Success breeds success • Never burn your bridges • Keep kids and families first • It should not be about who gets credit

40. Contacts • Diana Denboba; DDenboba@hrsa.gov • Kathy Rama; Kathy.Rama@cms.hhs.gov • Nora Wells; nwells@fcsn.org • Josie Thomas; josie@ppmd.org • Dara Howe; familyvoices@tndisability.org