Maternal and Child Health and Family-to-Family Health Information Centers

1. January 31, 2007 Diana Denboba U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau Division of Services for Children with Special Health Needs Maternal and Child Health and Family-to-Family Health Information Centers

2.  �Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.�

3. Mandates for the System Amended Legislation for Title V of the Social Security Act (1989): �Facilitate the development of family-centered, community-based, coordinated systems of services� Healthy People 2010 Objective 16-23 �Increase the proportion of States and territories that have service systems for children with special health care needs.� The President�s New Freedom Initiative (2001) Responsibility given to HRSA for developing and implementing a community-based service system for children and youth with special health care needs and their families.

5. MCHB :Focus/Vision/Principles The Bureau promotes and supports the development of family-centered, culturally/linguistically competent, community-based systems of care nationwide for CSHCN, and the entire MCH population.

6. MCHB :Focus/Vision/Principles Health disparities by racial, ethnic, geographic area and economic status will be eliminated. Family and community participation and engagement are key to the development of effective, quality health systems and services.

7. Why MCHB/Family Partnerships: Shared Vision

8. Levels of Partnerships Policy Program Practice

9. Family Voices National Center for Family Professional Partnerships/Family Voices (NM) F2F HIC�s, Family Voices Network, Others Technical Assistance Materials Web-site Evidence-base Topical Calls Collaborate with other MCHB National Centers

10. Family-to-Family Health Information Centers F2F HIC�s - a vision for many years of family leaders Family Voices piloted sites through MCHB grant to determine infrastructure/funding needs MCHB funded 6 centers for four years, CMS funded 29 And then��.

11. Family-to-Family Health Information Centers Services Mandated through the Family Opportunity Act (FOA) Assist families of children with special health care needs (CSHCN) make informed choices Provide information on health care needs of and resources available for CSHCN Identify successful health delivery models

12. Family-to-Family Health Information Centers Services Model collaboration between families of CSHCN and health professionals; Provide training and guidance on the care of CSHCN; Conduct outreach activities to families and providers; Be staffed by families; and In all 50 states and District of Columbia by 2009. (Competitive, FYs 08,09)

13. Current Funding

14. Family-to-Family Health Information Centers (F2F HIC�s) Are Partners �The impact of these centers has included: An increase in referrals to health clinics and services 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 leadership helped to involve Chinese speaking families in program and policy activities when they had not participated before. Family leaders provided input into the development of waivers, immigrant eligibility for programs, assessment tools for Medicaid long term care and the passage of FOA in ND.

15. Family-to-Family Health Information Centers (F2F HIC�s) Can Address: 2001 National Survey for CSHCN Only 75% families report services are easy to use; more than 33% of Hispanics and blacks report they are NOT easy to use 18% report at least one unmet need More difficult for complex medical needs, minority populations Only 57% of families with CSHCN report they participate in decision making and are satisfied with services they receive �+ poor families report receiving care lacking at least one component of family centered care; 47% of Hispanic & 43% of non-Hispanic Black families

16. Why Important to MCHB? Provide Services and Supports Building Leadership Improving Performance-Data Assuring Accountability Increasing Consumer Satisfaction

17. Why Important to MCHB?F2F HICs Promote: Family-Centered Care assures the health and well-being of children and families through respectful family/professional partnerships. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-centered care is the standard of practice that results in high quality services. Family/Professional Partnerships assures that all are working together collaboratively with a sense of shared ownership, responsibility, success, power and respect for each others� collective knowledge and expertise.

18. �When you have a child with special needs it�s nice to know that you are to alone. Whether you child has a life threatening or life altering illness you still go through all the same emotional up�s and down�s. To be able to talk to someone who has been in my shoes is a blessing.� Tracy, Washington County

19.  They may: Speak in different languages Live in different types of communities: cities, on farms and reservations Have different types of families But �Family Voices�, joined together, can help each other�s dreams come true.

20. Web-sites/Contact www.familyvoices.org www11.georgetown.edu/research/gucchd/nccc www.mchb.hrsa.gov www.championsforprogress.org www.cshcndata.org Diana Denboba, Branch Chief 301-443-9332; DDenboba@hrsa.gov