Family-to-Family Health Care Information and Education Centers

NORTH DAKOTA

Grant Information


Name of Grantee

Family Voices of North Dakota (FVND)

Title of Grant

FVND Health Information and Education Center

Type of Grant

Family-to-Family Health Care Information and Education Centers

Amount of Grant

$150,000

Year Original Funding Received

2004

Contact Information


Donene Feist, Project Director
PO Box 163
312 2nd Avenue West

Edgeley, ND 58433

701-493-2634
fvnd@drtel.net

Roxanne Romanick, Family Consultant
616 Crescent Lane
Bismarck, ND 58501
701-258-7421
romanick@bismidco.net

Subcontractor(s)

None.

Target Population(s)


Families of children and youth with special health care needs (CYSHCN).

Goals


  • Increase opportunities for families to obtain the full range of services and supports needed by their children with special health care needs.
  • Ensure that all families of CYSHCN have access to the information, resources, and training to be knowledgeable and effective navigators of their child's system of care and to make informed decisions about services and supports.
  • Improve and increase education and training opportunities for families and professionals so that families of CYSHCN have the skills and knowledge necessary to advocate for programs and policies that are responsive to their needs.

Activities


  • Develop and strengthen collaborative partnerships with agency programs and providers to increase family leadership and needed health care information, assess ongoing family needs, and foster collaborations with those concerned with the system of care for CYSHCN.
  • Recruit culturally diverse and appropriate representation to the FVND Board of Directors to review materials and serve as liaisons to their respective communities, the FVND, and the Center. Provide easy-to-use, culturally relevant health care information and materials to families of CYSHCN.
  • Develop and provide educational and training opportunities for families, youth with special health care needs, and professionals to increase active participation in the programs for CYSHCN.
  • Increase awareness of programs for CYSHCN through outreach activities, presentations, displays and trainings. Provide outreach to underserved areas and recruit families who can assist and advise the Center and its professional partners and serve as peer mentors.
  • Conduct a public awareness campaign.
  • Identify existing materials and informational packets to include on the Family Voices of North Dakota Web site.
  • Provide workshops for families and professionals on health care financing and systems of care.
  • Identify existing transition models and explore the development of youth training and activities.
  • Conduct an evaluation of the effectiveness and usefulness of the training opportunities.

Abstract


Families with CYSHCN need timely access to high quality services and supports in the health and long-term care systems within their community system of care. They often have difficulty obtaining services and supports due to the complexity of the systems, multiple programs with different eligibility requirements, and a lack of service coordination. Families who are knowledgeable about the relevant service systems and who have a support network are better equipped to ensure that their children receive needed services and supports.

The goal of this grant is to provide the information and support networks that families and their children need by establishing a Family-to-Family Health Information and Education Center within FVND. The Center will utilize the six core outcomes for CYSHCN in the President's New Freedom Initiative to identify gaps in the current community-based system. The Center will (1) assist consumers to become informed decision makers and obtain services and (2) provide coordination to help identify and address unmet needs.

Grant activities will build on existing efforts and increase coordination among families, communities, and other agencies and organizations that serve CYSHCN.

FVND, a statewide nonprofit organization, is a grassroots advocacy network of families and professionals dedicated to obtaining comprehensive, coordinated, family-centered, culturally competent care for all CYSHCN.