• Cover of Fact Sheet

    Five Top Tips for Engaging Families in Advisory Roles: Advice from a Family Leader

    How do organizations and agencies serving children with special health care needs recruit family members to serve on an advisory committee? How do they encourage commitment to their role? How do they maintain engagement with them? This fact sheet provides recommendations for meaningfully engaging a group of family advisors.

  • A Guide to Establishing Effective Hospital Family Advisory Councils

    When families feel that they are partners with their children's health care providers, the quality of care improves and parents' fears and anxieties are reduced. One means of ensuring that families have a strong voice regarding their children's care is establishment of Family Advisory Councils (FACs) in health care organizations. The California Patient & Family Centered Care Network, a statewide collaborative composed of parents and providers representing 15 pediatric hospitals and clinics, has developed a checklist for establishing effective Councils.

  • Telehealth Policy Solutions for Children with Complex Medical Needs

    Telehealth has proven to be an effective tool in making specialized care more accessible for children and youth with special health care needs, but in California providers and families are not using this service to its full potential, according to a new report.

  • The ‘Hidden Health Care System’ in California Schools and Children with Special Health Care Needs

    Health services for California students with special health care needs vary greatly by school district, are provided by a variety of school staff, operate under a confusing patchwork of regulations, and are often underfunded, according to a new study. Researchers from California State University-Sacramento’s School of Nursing analyzed 2011-2012 state education data, interviewed school education experts, and conducted a large-scale survey of certified school nurses who are members of the California School Nurses Association.

  • Habilitative Services Under the ACA: What States Should Consider

    Habilitative services, which help a person keep, learn or improve skills and functioning for daily living, are essential for many children with special health care needs. Under the Affordable Care Act, states will play a primary role in determining which services are covered. This paper outlines key factors states should keep in mind as they make their decisions.

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