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.
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.
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.
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.
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.
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.
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.
The Lucile Packard Foundation for Children’s Health has provided a number of documents intended to facilitate discussion about the public and private systems of care for children with chronic health problems in California. In light of recent discussions about proposed changes to the California Children’s Services program, Edward L. Schor, MD suggests that a number of aspects of the current systems can be improved without being dismantled.
Ann Cirimele knows from personal experience how hard it is to navigate the health care system as a parent of a child with special health care needs. As the executive director of the Family Resource Network in Stockton, she’s helping families in rural California through the complexities of the system of care while also working with other local agencies to improve that system.
Families of children with special health care needs have real-world experience that could help make health care policies more family-centered and culturally competent. However, many lack the training and confidence to make their voices heard. Project Leadership, operated by Family Voices of California, offers a comprehensive training curriculum and mentoring program that prepares families to engage in public policy advocacy.