REGION 9 Family Leader Meeting

1
Family-to-Family Health Information Centers
A Short History of F2F HICs A Community of
Learners F2F HIC Meeting Pew Charitable
Trusts Washington DC June 9,2008
Nora Wells Director, Family Voices National
Center for Family/Professional Partnerships nwell
s_at_familyvoices.org
2
First steps to F2F HICs

• Legacy of family advocacy around specific issues
  in health care
• MCHB vision and health care reform debate drives
  formation of Family Voices 1992
• FV connected network of family leaders in every
  state rapidly escalates identification of family
  needs, partnership with professionals

3
Early funding supports models

• 1996 - 99 RWJ grant to FV modest funds awarded
  competitively to FV model sites in 8 states
• 1998 2002 FV cooperative agreement with MCHB
  allows FV to continue modest model site funding
  extended to 11 states
• 1999 2000, FV cooperative agreement with MCHB
  to review lessons learned in model sites and to
  make recommendations

4
Key Recommendations to MCHB

• January, 2001 Family Voices develops Preliminary
  Recommendations to MCHB DSCSHCN, based on pilot
  site experiences
• Report details purposes of F2F HICs, core
  functions, structure, staffing needs, funding
  needs, TA needs, next steps to build and fund
  national network of F2F HICs
• Importance of information, training,
  partnerships, DATA, cultural competence

5
Convergence of Needs and Opportunities

• 1997 1999, Attempts to secure legislative
  funding for F2F HICs in every state Senators
  Grassley and Kennedy play key roles
• 1999 FV helps put F2F HIC concept into
  legislative language
• 2000 F2F HIC language linked to Ticket to Work,
  Medicaid buy in for kids Coalition of multiple
  partners begin meeting in DC to push FOA 6 year
  battle begins

6
Pilot funding for F2F HICs in states

• Open competitive process and funding of 6 initial
  MCHB funded sites (CA, FL, ME, MN, TN, VT) 2001
• FV MCHB urge CMS to expand funding for F2F HICs
  through Real Choice System Change grants
• 2003 3 cycles of CMS funding staggered start
  over 3 years F2F HICs in additional 29 states
  cooperative relationship with MCHB!

7
Success through support!

• Bi-partisan support with Senators Grassley and
  Kennedy at the helm
• Tie to Ticket to Work and Medicaid reform -
  multiple compromises
• FOA passed in 2005, signed in to law in Feb 2006
  !
• New are allocated 3 year phase in within
  Social Security Act - MCHB jurisdiction open
  competition within states

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Current F2F HICs
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TA opportunities through FV NCFPP

• FV national staff assistance
• Ongoing peer support mechanisms list
  serves/conference calls/meetings
• Targeted TA matches/opportunities with peers
• Opportunities to share through webportal
• Specific materials, customizable materials, tools
• Partnerships through connections with multiple
  professional groups

10
A Legacy for a Community of Learners

• Legacy in family health advocacy of
  sharing/mentoring
• Long term commitment with strong allies to a
  vision and goal
• Power of connectedness

11
Keep our Eyes on the Prize
Keep our Eyes on the Prize
In some tribal African communities, the standard
greeting when one meets another is How are the
children?