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.