• Journal Articles

    The Impact of Medical Homes on Hospital Readmission and ED Visits for CSHCN

    Little is known about the relationship between receiving primary care in a medical home and unplanned hospital readmissions and emergency department visits among children with special health care needs (CSHCN). A new study, published in the journal Pediatrics, sheds lights on this issue.

  • Research & Reports

    The Care Coordination Conundrum and Children and Youth with Special Health Care Needs

    Care coordination almost always tops the list of services desired by families of children with special health care needs. Yet agreement is lacking not only on the definition of care coordination but also on the best methods of financing this much-needed benefit. A new report from the Catalyst Center, with support from the Lucile Packard Foundation for Children's Health, tackles the thorny questions of what care coordination is, who should receive it, who should provide it, and how it should be financed.

  • Fact Sheets

    6 Child Disability Rights Laws You Should Know

    To commemorate tomorrow’s 15-year anniversary of the Individuals with Disabilities Education Act (IDEA), we are looking back at six key laws that have specifically helped improve the lives of children with special health care needs.

  • Research & Reports

    Hidden in Plain Sight: California Children Using Long-Term Care Services

    With medical advances, the number of children needing long-term care over a lifetime continues to grow, presenting ongoing challenges to families and to the system of care that provides support. A new report describes how historical developments and current policies contribute to the lack of an effective system of care to manage the often complex, multi-dimensional health needs of these children and leaves families with an overwhelming burden of care.

  • Insights

    Meet the Mom Whose Bill Awaits Gov. Brown’s Signature

    Alisa Rosillo has two teenage sons who use wheelchairs, but she hasn’t let these challenges slow her family down. In 2007, the Concord, CA, mom helped pass a state law to curb the abuse of disabled parking spots. Now she has another bill sitting on the Governor’s desk.

  • Research & Reports

    Creating and Sustaining Effective Hospital Family Advisory Councils

    Establishing Family Advisory Councils (FACs) in children's hospitals is one means of ensuring that families have a strong voice regarding the care delivered to their children. To encourage development of FACs that truly have an impact, the Lucile Packard Foundation for Children's Health provided grant funding for the formation of the California Patient & Family Centered Care Network, a statewide collaborative composed of parents and providers representing 15 pediatric hospitals and clinics. A new report summarizes the work of the Network, and offers guidelines for establishing effective FACs.
  • Fact Sheets

    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.

  • Insights

    CCS Redesign Must Preserve the State's Specialty Care Network

    One of the most significant benefits of the California Children’s Services (CCS) program is the network of pediatric subspecialists and special care centers, including children’s hospitals, that CCS has developed through its credentialing process and enhanced reimbursement rates. Preservation of that network should be the top priority in any CCS redesign, says David Alexander, MD, president and CEO of the Lucile Packard Foundation for Children’s Health. He notes that the network makes subspecialty care available to all the state’s children with complex needs, not only those covered by CCS. Read his commentary.

  • Fact Sheets

    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.

  • Research & Reports

    Realizing the Promise of Telehealth for Children with Special Health Care Needs

    Telehealth—the use of technology to provide and coordinate health care at a distance—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. A new report explores the barriers to use and proposes some solutions.

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