Building a Statewide Family-Driven Navigator Network for Families of Children with Developmental Disabilities
Debra Waldron, MD, MPH (Moderator)
Clinical Associate Professor of Pediatrics and Director and Chief Medical Officer, Child Health Specialty Clinics, University of Iowa Hospitals and Clinics, Iowa City, IA
Barbara Khal, MA
Program Consultant Director, Division of Public Health, CHSC, UIHC, Iowa City, IA
Rachell Swanson-Holm, BS
Project Director, Family to Family Iowa Support 360, Child Health Specialty Clinic (CHSC), University of Iowa Hospitals and Clinics (UIHC), Fort Dodge, IA
Erica Zito
Project Director for Iowa's Family to Family Health Information Center, CHSC, UIHC, Iowa City, IA
Supporting families raising children with developmental disabilities by providing a one-stop navigation network has been proven to enhance the capacity of children and their families in making informed choices by helping them find supports and services they need to successfully live, work and recreate in their own communities. The presenters will share details of the Family to Family (F2F) Iowa project, which utilizes family representatives to guide and implement the statewide Navigator Network and access evidence-based health information. They will discuss how merging the F2F Health Information Center and Family Support 360 grant projects strengthens Iowa's system of care for families of children with developmental disabilities and co-occurring or complex health care needs and they will show how building collaboration between two projects with similar but distinct goals promotes the sustainability of both. They will discuss how partnering with multiple family groups and state agencies to develop shared Navigator competencies will increase the dissemination of high-quality resources, information and services. They will describe planning that has occurred to link partner agency websites with one virtual website. Finally, the presenters will discuss how both system- and community-level quality improvement efforts enhance family leadership.
The Role of Family Organizations in Enhancing Performance on the Core Outcomes for CYSHCN
Josie Thomas
Executive Director, Parents Place of Maryland, Glen Burnie, MD
Diana Autin, JD
Executive Co-Director, Statewide Parent Advocacy Network, Newark, NJ
Research demonstrates that effective communication and collaboration with families is essential to improving maternal and child health. Family-led organizations, whose primary mission is empowering families, are indispensable partners in improving communication and collaboration with families. Family-led organizations have the "on the ground" connections to community-based organizations that serve families whose children have the poorest health outcomes. This workshop will provide MCH programs and family organizations with concrete, how-to information, resources and tools on the role of family organizations in partnering with state MCH agencies to improve state performance in the six core outcomes for CYSHCN, especially for underserved children and families. It also will provide strategies and tools to develop and strengthen family-state partnerships from the perspective of two Family Voices state affiliates who house their State Improvement Grant for Integrated Community Systems of Care for CYSHCN, in partnership with their state departments of health and American Academy of Pediatrics chapters. The workshop will also facilitate the sharing of participants' experiences with family organization leadership in the six core outcomes.
Families as Agents of Change: Building Infrastructure and Systems for CYSHCN
Lynda Honberg, MHSA (Moderator)
Project Officer, DSCSHCN, MCHB, HRSA, Rockville, MD
Josie Thomas
Executive Director, Parents Place of Maryland, Glen Burnie, MD
Deborah Garneau, MA
Special Needs Director, Rhode Island Department of Health, Providence, RI
States Title V programs and DSCSHN continue to strive to include families and youth. Yet there is more work to be done to embrace families and engage families and youth as agents of change. Family involvement has been marked by steady movement along the continuum from no family involvement to involvement through active engagement; yet only some states have moved to the point of employing families and youth as agents of change. Engaging families as agents of change needs to be a more purposeful act that is important not only for systems integration but for sustainability.
A Model of Working Together to Change the System of Care for CYSHCN: Creating an Infrastructure That Facilitates Networking and Collaboration
Amy Whitehead, MPA (Moderator)
CYSHCN Statewide Coordinator, Wisconsin Title V Program, Madison, WI
Sharon Fleischfresser, MD, MPH
Medical Director, CYSHCN, Wisconsin Division of Public Health, Madison, WI
Barbara Katz, BS, MA
Co-Director, Family Voices of Wisconsin, Madison, WI
Craig Becker, MSSW
Senior Clinical Social Worker, American Family Children's Hospital and Clinics, Madison, WI
The Wisconsin Title V MCHB-funded programs developed a model of working together to ensure program integration through grants management, family involvement and cross-program staffing. This paradigm shift leads to an enhanced service system and produces richer outcomes for the Wisconsin Title V CYSHCN Program, Family Voices, the Wisconsin Leadership Education in Neurodevelopmental Disabilities and the University of Wisconsin Pediatric Pulmonary Center's interdisciplinary training programs. Partnerships are sustained through three groups: an integrated management team that assures coordination across grants; an MCH partner group that collaborates on training, service and outreach; and the CYSHCN Collaborators Network that promotes messages, refers families and assures information exchange and problem solving on service delivery. Families are partners in all that we do. Shared staff across MCH programs have allowed for more integration of objectives. This interactive session will provide an opportunity for participants to share challenges and success stories of how program integration and collaboration have enhanced the outcomes and sustainability of programs.