Keeping families at the center of children’s health care is always the priority of Family Voices, says Lynda Honberg, mother of a young adult with special health care needs and director of strategic partnerships for the national advocacy group.
At Caring Corner, a pediatric day health center in Bakersfield, nursing director Meg Molloy oversees care for dozens of medically fragile children – “but we don’t treat them like they’re sick,” she says.
More than 50 stakeholders – including families, health care providers, state officials, advocates and insurers – offered their thoughts on potential changes to the California Children’s Services (CCS) program when its “carve-out” from Medi-Cal managed care ends in December 2015.
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.