The overall goal of this project is “to assist families of Children and Youth with Special Health Care Needs (CYSHCN) in making informed decisions about healthcare in order to promote good treatment decisions, cost-effectiveness, and improved health outcomes. The Missouri F2F will provide information, training, and personal support to families of CYSHCN and professionals through collaborative local, state, and national partnerships. The result will be improved informed decision making and health outcomes.
Activities/Methodology:Project objectives include:
1.To assure that families of CYSHCN play key leadership roles in the planning, operations, evaluation, and sustainability of the Missouri F2F.
2.To support and expand collaborative partnerships between families of CYSHCN, health care providers, policymakers, family advocacy organizations, programs and agencies at local, state, and national levels.
3.To provide health care information, education/training and mentoring to families of CYSHCN to assist them in accessing information and services related to the six core outcomes and the provisions of the ACA.
4.To support families of CYSHCN to become active leaders and partners in decision making at all levels of services, systems and public policy related to CYSHCN.
5.To sustain the services of the Missouri F2F and publish/disseminate information and outcomes locally, regionally, and nationally.
Charting the Life Course: Tools for a Good Life
Charting the Life Course is a Framework that we have developed to help CSHCN at any age or stage of life and their families to think about what they need to know, identify how to find or develop supports, and discover what it takes to live a good life. We have developed tools based on this Framework, including a Life Course Booklet with questions to guide families in thinking about quality life for their CSHCN. Additionally, the Life Course Folder provides families with resources and information on services and eligibility criteria. The Trajectory Worksheet helps people create a vision for a good life for their CSHCN and encourages them to explore a variety of supports to obtain that vision, including community resources, technology, friends and family, as well as traditional resources for which they may be eligible.