families caring for children with special needs. Stone Soup was recently awarded funding as Alaska’s Parent Training and Information Center (PTI). The PTI has training centers fostering collaboration with education and multiple community services in various regions of the State. The many collaborative partnerships of Stone Soup Group, including parent navigation to the Providence Pediatric Neurodevelopmental Clinic and the Neonatal Intensive Care (NICU) developmental follow-up program, provide opportunities for identifying parents in need of parent support, assistance with navigating the system of services, and information. The Parent Navigator is a member of and provides a report to the EHDI Advisory Committee and as well as monthly reports to the State EHDI Program. The parent navigation report will be used to identify systems issues and barriers to meeting the National 1-3-6 Goals, and a springboard for developing future quality improvement projects.
A brochure was developed to introduce parent navigation services. It will be distributed to all EI/ILP grantees. In addition, the AAP Chapter Champion will introduce the role of the Parent Navigator to primary care providers at Grand Rounds.
The Parent Navigator will work with the EHDI Program Manager to develop a survey to determine the method in which parents would like to receive parent support. The survey will look at creative opportunities for parents to communicate and receive information, such as through the internet, web cams, and the traditional parent support meeting. The EHDI Program Manager will analyze identified barriers to parent support and how they may be overcome to ensure families have access to parent support and unbiased information to become informed decision makers. The role of parent navigation will also be promoted throughout EI/ILP as a mechanism for enhancing care coordination for families.
The information from the survey will be used to develop a State Plan to address family support issues. A team of providers and parents will be identified to attend the Annual Investing in Family Support Conference sponsored by National Center for Hearing and Assessment Management (NCHAM). This is an opportunity to hear how other States are supporting families and further enhance the Alaska State Plan.