PO Box 163 312 2nd Avenue West
Edgeley, ND 58433
Phone:  (701) 493-2634Fax:  (701) 493-2635Toll-Free:  (888) 522-9654
Primary Contact(s):
Grant Abstract Summary:
The activities and outcomes of the proposed F2F Center will live up to the MCHB mission. Families of North Dakota deserve the opportunity to have family driven information and partnerships that leads to informed health care decision making. ND children and youth with special health care needs deserve the effective systems, services that support their aspirations and be healthy to be productive whenever possible.

Activities/Methodology: The methodology of the project will address the problem and its contributing barriers through a toll free line and referral line, web based and hard copy resources and tools for families and providers, data analysis and systems change, community based outreach to underserved populations, and support local and state family run initiatives to enable them to better meet the needs of CYSHCN and their families and expand the capacity and visibility of ND’s family leaders. FVND-HIEC will provide and increase needed health care information and educational and training opportunities that support families, youth and professionals; strengthen professional partnerships; assess needs; foster collaborations with parent groups, providers and agencies concerned with the system of care for CYSHCN; and monitor/evaluate outcomes throughout the project period.
Highlighted Activity:
Parent Leadership Institute
For the past 8 years, FVND has partnered with the Federation of Families for Children’s Mental Health, Designer Genes, Early Intervention, North Dakota PTI, Children’s Special Health Services (Title V), Pathfinder Parent Center, and the State Council on Developmental Disabilities to plan and run a Parent Leadership Institute. This weekend event for 25 participants provides training on understanding systems of care for CSHCN and navigating services, using the National Family Voices Leadership Guide as a resource. Participants are also provided guidance on leadership and communication styles and helped to establish goals for the coming year. While the present model has been a success, tweaks are being made to offer the course over a period of several months to promote ongoing mentorship, leadership and to extend he sections on how to impact systems.

As a result of our institute, many participants have become leaders: starting support groups; developing a state Hands and Voices chapter (advocacy for deafness community); impacting autism supports; increasing recreational opportunities for CSHCN in their communities; testifying about legislation on many issues; becoming a better advocate for their own child and mentoring other parents.

We are currently applying for other funds to increase this leadership training, provide better follow up to participants, and improve data tracking on how systems are impacted by providing this institute for families.
Shared Resources:
Resources are shared by the F2FHICs to help families, other family leaders and partners. While you are welcome to adapt any of the materials for your organization, we ask that you include an acknowledgement of the author/source in your adaptations and that you let the original author know of your use of the materials. Copyrighted materials may not be reproduced or adapted without the express permission of the author.
A 66-page report that compares data collected from families in 2006 and 2009 on their health care experiences for CYSHCN.
A 147-slide presentation that discusses information and skills needed to be a parent leader. Goals are to provide helpful ideas and practice tools to help you work collaboratively with health care providers and payers; to encourage good consumerism in the health system; to provide helpful ideas and practical tools to help you coordinate your child’s care
An 89-slide presentation that discusses Medicaid and EPSDT in ND, including eligibility, FAQs, and other resources
A 34-page report of family-written stories on their experiences and issues in caring for their CYSHCN; also includes recommendations from FVND.
A 38-page guide that includes tips for families and resources in North Dakota
A brochure that describes the medical home concept
A 110-slide presentation that discusses advocacy and family/professional partnerships.
A faxable form to request services from FVND.
A 48-page printable care notebook for families in North Dakota to keep track of important information about your child’s health care.
A 27-page guidebook to help families access SSI benefits in ND. Includes discussions on eligibility, application, denials, advocacy and additional resources.
What Others are Saying about this F2F HIC:

Thanks to FV, I stay informed about things that matter most and make a difference in the lives of people with disabilities and special needs, and the families who love, support, and care for them. My days are full working to the meet the demands of jobs, home, and family, so time is precious. The information that FV provides is targeted, specific, and to-the-point, so I learn what I need to know quickly, and I appreciate that.

- a professional