The Family to Family Health Information and Education Center Project will benefit CYSHCN and their families in Montana by addressing their needs for information, training, and support to make more informed choices and participate in health care decisions. Parents and children are empowered by access to needed information and resources and have a positive impact on the service system when there is a history of collaboration among agencies, professionals, and families.
Activities/Methodology: The project will use an established network of trained parents, toll-free phone network, electronic resources, website, online communication resources, library, collaborative partners, and parent & child leaders to carry out the goals and objectives.
Family Advocates in Medical Settings
Using the Rhode Island Pediatric Practice Enhancement Project as a model, the Montana F2F began to collaborate with the Mountain States Regional Genetics Collaborative (MSRGC) in March of 2013 to provide care coordination to families of CSHCN in two pediatric practices. This project facilitates pediatric medical home implementation by providing practices a low-cost, high value method of ensuring family-centered, community-based, culturally effective, coordinated, comprehensive, accessible and continuous care. It places and supports trained Family Advocates in these pediatric clinical settings to link families with community resources, assist physicians and families in accessing specialty services, and identify systems barriers to coordinated care. Family Advocates within these medical home practices:
- Answer families’ questions about systems of care and community resources
- Give families a consistent source of information so care for a patient does not stop between visits.
- Bridge the gap between the medical practice and other areas of family concern such as education, social services, family issues, etc.
- Demonstrate a commitment to family-centered care, and give a medical practice the ability to address the family as a whole, rather than just the initial purpose of the appointment.
- Help families understand and carry out medical recommendations.
- Allow for a Systems-of-Care approach to coordinating a family’s non-medical special health-care needs.
- Show families a commitment to helping their family and child have healthy outcomes.
Plans are in place to expand the project to two more locations with four more Family Advocates. Agreements have been completed with another private pediatric practice and with a hospital primary care system. The lessons learned from the clinical experience of the first cohort of Family Advocates will be shared through trainings within the state. The goals for year two will be to actualize the model and develop a comprehensive data collection and evaluation plan to support sustainability.