Parent and Peer Navigation Programs

One of the most robust resources for parent and peer navigation support are the state-based Family-to-Family Health Information Centers (F2F HICs).  Funded primarily by the federal Maternal and Child Health Bureau through a competitive grant process, the F2F HICs are led and staffed by parents who are experienced both in navigating the complex system of care for CYSHCN and providing mentoring support to other parents.  Some of the F2F HICs are independent nonprofit organizations while others are based in larger nonprofits or state agencies. 

An example of an F2F HIC is the Stone Soup Group in Alaska.  Stone Soup hires parents of CYSHCN to offer support, guidance and navigation throughout the system to other parents. They offer information and referral, training, peer mentoring, and emotional support, but do not provide case management.  While Stone Soup has a F2F HIC grant, its funding is limited.  The Title V program provides the additional funding for the parent navigators.

There is an F2F HIC located in every state and the District of Columbia.  View more information on F2F HICs and a state-specific contact list.  

Rhode Island has a parent navigator program called the Pediatric Practice Enhancement Project (PPEP) where parents of CYSHCN are employed and supported at primary and specialty care sites. The program was originally funded by the Rhode Island Department of Health, a federal integrated services state implementation grant, the Department of Human Services, as well as through the participating practices.   Additional funding was provided through the state Title V Block Grant, Rhode Island Medicaid and a grant from Neighborhood Health Plan of Rhode Island (a private, nonprofit health plan).  Twenty-five practices participate in this model, and they recently expanded to adult health care with ten additional practices.  View a digital story featuring the PPEP parent navigators.