Family to Family Health Information Centers

DESCRIPTION

"Strict income guidelines placed on most services make working poor and middle income families ineligible for services, which places a great hardship on the family. It is tragic that we have actually taken a few telephone calls from these low to middle income families requesting information on residential programs or institutions to place their child in because they either cannot afford to provide fo their child at home, or they do not have the physical or emotional supports ot maintain their child at home."
Staff at a F2F HIC

beachFamily Voices provides training and technical assistance to Family to Family Health Information Centers (F2F HICs) and the national Family Voices Network focused on helping them assist families and professionals in caring for children and youth with special health care needs (cyshcn).  This includes helping Family Voices Network Members and F2F HICs build their infrastructure, develop leadership skills, collaborate with professional partners, and collect data and other evidence of community-based systems of services for cyshcn.  The Family Voices goal in this project is to develop Family-to-Family Health Information Centers in all states and territories so that families of children and youth with special health care needs have the information they need to make informed decisions and to assure family-centered, community-based, culturally competent care for their children.

Beginning in 1999, six state Family Voices organizations—California, Florida, Rhode Island, Illinois, Tennessee and Utah—were selected to receive funding as 2-year pilot sites for Family-to-Family Health Information Centers. With modest seed grants from Family Voices, the sites began plans and activities that helped them provide health care information to families and organize as centers.

The work performed to date indicates the tremendous need for financial support, training and technical assistance, and product development so that states can develop Family-to-Family Health Information Centers that will provide information to families on medical home; health insurance availability; early screening and intervention; appropriate transition services for youth; and leadership and decision-making capacity for all families. Six Family-to-Family Health Information Centers were funded by the Maternal Child Health Bureau in June 2002:

In October, 2003, the US Department of Health and Human Services, through The Centers for Medicare and Medicaid Services, announced funding for 9 additional Family-to-Family Health Information Centers. These Centers are located in: sledding

In October, 2004, the US Department of Health and Human Services, through The Centers for Medicare and Medicaid Services, announced funding for 10 additional Family-to-Family Health Information and Education Centers. These Centers are located in:

We continue to work towards the creation of permanent, vibrant and effective Family-to-Family Health Information and Education Centers in every state by pairing training and technical assistance with timely communication.
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MATERIALS

  • Family to Family Health Information Centers (F2F HICs): Helping Families of Children with Special Health Care Needs | About F2F HICs-pdf
    • A one-pager that discusses the benefits of and need for Family-to-Family Health Information Centers (F2FHICs) in all states and territories.
  • Data Summary of 13 Funded F2F HICs (July, 2003 through June, 2004)Data Summary (13 F2F HICs)-pdf
    • Findings from 13 funded F2F HICS for the period July, 2003 through June, 2004, summarized by: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals.
  • Data Summary (July, 2003 through June, 2004) Data Summary-pdf
    • Charts and highlights of data reported to Family Voices by F2F HICs and Network Members; includes data about contacts with families and professionals, topics of information provided during contacts, issues with health care financing, and broader scope activities, such as newsletters distributed, listserv members, handouts, meetings, and underserved population reached.
  • Friday's ChildFriday's Child
    • A weekly e-newsletter containing information for existing and emerging family leaders on topics such as leadership, mentoring, partnering and team building. Helpful websites, legislative updates, data bytes and FV-Talk summaries are regular features. Sent by e-mail every Friday to all Family Voices Network members, staff, board members, funders, key stakeholders and friends of Family Voices.
  • Voices From Home-2005 (NAT99H/P/C) Voices-pdf | Voices-hardcopy
    • An annual ‘state of the state’ publication providing information about the activities and projects of the Family Voices network members in each state to help ensure family-centered, community-based, and culturally competent systems of care for children and youth with special health care needs. Contact information for all network members is also provided.
  • Diversity StatementDiversity Statement-html
    • A proclamation of the commitment of Family Voices to strive for quality health care for all children and youth with special health care needs.
  • Kids As Self Advocates (KASA)KASA-html
    • A national grassroots network of youth with special needs and friends, speaking on their own behalf.

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RELATED INFORMATION

  • Maternal and Child Health Bureau: Achieving and Measuring Success: A National Agenda for Children with Special Health Care Needs
    • A description of the six critical indicators of progress (medical home, insurance coverage, screening, organization of services, family roles, transition to adulthood) for measuring family-centered, community-based, coordinated care for children with special health care needs and for facilitating the development of community-based systems of services for such children and their families.
  • American Academy of Pediatrics: National Center of Medical Home Initiatives
    • Information, tools, trainings, and other supports for physicians, families, and other medical and non-medical providers who care for children with special needs so that they have access to a medical home.
  • Health and Ready to Work National Center: Health and Transition
    • Information and connections to health and transition expertise nationwide.

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PROJECT CONTACT

Cindy White: cawhite@familyvoices.org
Jennifer Cernoch: jcernoch@familyvoices.org
Family Voices, Inc.
2340 Alamo SE, Suite 102
Albuquerque, NM 87106
(505) 872-4774
(888) 835-5669
(505) 872-4780 (fax)
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Project Highlights

NCFPP
Training and technical assistance for the development and expansion of Family-to-Family Health Information Centers (F2F HICs)

Bright Futures
Development of resources and materials for families and communities to promote and improve the health and well-being of all children

KASA
Development of a national grassroots network of youth with special needs and friends, speaking on their own behalf

Title V Toolbox
Collection of resources, materials, and models for family involvement from the FiPPS project organized in a searchable web repository


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