The purpose of our project remains centered on providing health information and education to families of CYSHCN. These families often have difficulty navigating the public health care system in order to obtain the benefits and services necessary for their child. Our goal is to not only provide the relevant health information but to also promote advocacy skills so that parents are able to communicate their unmet needs. We are accomplishing this goal by providing materials and workshops on a variety of pertinent subject matters and in multiple formats to meet the needs of all families. Due to the downturn in the economy we are adjusting some of our programs and delivery methods in order to meet the changing needs of the parents we serve.
Activities/Methodology: Provide assistance to families that call, email or attend our workshops with resources for CYSHCN. Develop information packets for families on emergency preparedness/disaster relief and public health. Conduct 6 topical workshops on 3 different subjects of interest to parents of CYSHCN. Conduct 8”Five Steps to Being Your Child’s Best Health Care Advocate” workshops. Provide 4 parent workshops on Medical Home and the Care Notebook for the Hispanic population. Conduct one full day parent leadership institute on impacting health care policy. Provide ongoing support and education through conference calls and leadership blog. Conduct trainer of trainers workshop on Health Care Advocacy. Offer the trainer of trainers participants conference call educational programs to support their own training efforts and provide the workshops to even more NC families. Continue an email bulletin list, “The Beacon” of community organizations sending updates, new information, and/or promising practices monthly. Provide workshop materials, packets and fact sheets on the ECAC website.
The Care Notebook is a tool for families that gives the family a sense of mastery in overseeing their child’s health care by providing a framework for stories, health data, and history of their child. Family enthusiasm, train-the-trainer activities, and the new emphasis on care coordination within the ACA and Medicaid programs have increased knowledge of the Care Notebook so that it is now being used broadly across NC. Pediatric ICU staff and administrators, Neonatal ICU staff and administrators, Katie Beckett providers, and hundreds of English and Spanish-speaking families worked on creating the most recent revision of the notebook, which is now in production. The Care Notebook is available in Spanish and English and can be accessed online, as a CD, and in a print version.
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.
Parent curriculum on transitioning youth with special health care needs from pediatric to adult health care.
This PowerPoint presentation follows the Carolina Health and Transition curriculum.
This toolkit goes hand in hand with the transition curriculum. Please download both items.
Learn the importance of organizing and keeping your child's medical information using this 65-page notebook.. Easy to use format gets you started during the workshop!
This 29-page curriculum is designed for a full day conference. Discover what type of leader you are, learn advocacy skills for your child, obtain information on how to serve effectively on boards and committees, discover leadership opportunities on a local, state and nationwide level, learn how you can impact health care policy.
Brochure is an overview of the services including workshops that we provide for families across the state of NC.
Spanish version of the NC Family to Family Health Information Center brochure. Includes the services and workshops we provide for families across the state of NC.
Brochure that describes the NC F2F HIC Medical Home Parent Training.
PowerPoint companion to accompany the "Your Child's Medical Home" curriculum
A parent training curriculum which can be presented in about 1.5 hours.