More than 90% of children with chronic illness now survive into adulthood, which presents a range of challenges for individuals and for the system of care. This Issue Brief describes key unmet needs regarding a) developing chronic disease self-management skills; b) enhancing the capacity of the adult health care system to care for young adults with special health care needs; and c) reducing lapses in care during the transition period. The authors, fellows at the Stanford University Clinical Excellence Research Center, offer recommendations for improving the transition.
California’s uncoordinated system of care for children with special health care needs often creates significant difficulties for families, yet family voices are generally absent from policymaking. A new report documents the level of family participation in decision-making processes for organizations that influence the health and well-being of their children.
Whether it’s CCS, CHGME, DSH or ACA, Tim Curley follows them all. With years of experience in federal and state health policy, he keeps a close eye on the politics of paying for children’s health care, including trends in Medicaid and managed care policy that deeply affect children with special health care needs and their caregivers.
A shared plan of care is an essential element of a medical home for children with special health care needs, yet there is no consensus on either the content of care plans or the process of care planning. A new report outlines recommended core content of a comprehensive and integrated plan, and the steps necessary to create it.
Kausha King’s work as the parent health liaison at the Care Parent Network in Contra Costa County is deeply personal. Nearly everything she teaches parents about advocating for their children with special health care needs, she has experienced herself. “It’s a world all our own, and we came into it blind and had to learn,” she says.
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.
Karen Fessel is known throughout California for her passionate advocacy to get insurers to pay for the services families need for their children on the autism spectrum. Now, she’s branching out to serve children with other special health care needs.