Activities/Methodology: Project direction and implementation will be guided by an executive committee comprised of families of CYSHN; project co-principal investigators are parents of CYSHN; a family member will be hired to coordinate the project. Family consultants and liaisons will provide peer support and information through a statewide network. An advisory group of professionals, families and family organizations will meet semi-annually to assure accountability and quality of the project. Family Consultants and Liaisons will be identified, trained and supported to provide services to families seeking assistance. Existing Community Connections Network Family Liaisons efforts will be expanded to provide F2F HIC assistance. Contracts and partnerships will be used to enhance outreach to rural and diverse families. A dedicated toll free line and website will be maintained. Family consultants and liaisons will be connected through a list serve; training materials will be archived in an online tool box. Families will review materials and OHSU and community partners’ consultants will help assure the accessibility or translation of materials and information. Required data will be collected and reviewed monthly by the Executive Committee and Advisory Group. The OCCYSHN evaluator will assist in collecting, analyzing and reporting impact data.
In order to do this work, the OR F2F HIC has developed a unique “map” of the state that identifies key groups who will partner with us to offer these gatherings in locations that are familiar and welcoming to families. Our map, a 5’ x 3’ map of the state pinned to a wall in the office, was first populated with tags representing every known parent leader in the state. Using word of mouth, we contacted dozens of groups, like the Autism Society of Oregon and The Arc of Oregon, as well as groups that meet informally in churches and playgrounds, and everything in between. We included parent groups from the health, developmental disabilities, and mental health domains, as well as those focused on advocacy, recreation, or other topics.
Gathering the names of contact persons from agencies and organizations that touch families’ lives in some way, we filled in our map and built a database. Now, for almost each of Oregon’s 36 counties, we have identified a network consisting of family groups and helpful professionals such as Disabilities Coordinators at Head Start, Early Intervention Teachers, Title V Nurse Care Coordinators, Community Developmental Disabilities Case Managers, and many others. In the most rural part of Oregon, even the delivery drivers of home medical equipment have participated in our network.
Information about these organizations is provided specific to the region where the Family Gathering is taking place. We connect with an organization to host the gathering and they locate a meeting place, circulate publicity, organize registration, and let us know a focus for the meeting. Typical topics include: Resources and More, Becoming Your Child’s Health Advocate, and Planning for a Healthy Transition. We bring light refreshments and plenty of resource materials. Groups are generally between 3 and 15 participants. As a result of these gatherings, families connect with one another and learn about support and health-related programs. Through the meetings we also are able to provide our state’s Title V CYSHCN program with feedback about families’ experiences. During the launch of our state’s Health Insurance Marketplace, these Regional Family Gatherings were instrumental in providing information about the ACA and in clearing up myths and misconceptions. One family member from a frontier county remarked: “I don’t think we really knew what Obamacare was until you came out here.” She left the event with a supply of explanatory brochures about Cover Oregon and Health Care Reform to distribute to her friends.