Enhancing the System of Care for Children with Special Health Care Needs
mproving California's system of care for children with special health care needs became the primary focus of the Foundation's investments in 2010. This relatively new area complements the Foundation's fundraising on behalf of Packard Children's Hospital by seeking to develop a more complete continuum of care for children with special needs in their communities.
To assess the current health status of children with special health care needs, the Foundation commissioned an analysis of California data from two national surveys. The resulting report, Children with Special Health Care Needs: A Profile of Key Issues in California, documents how poorly the state is faring on many measures for these children and their families. In fact, California is worst in the nation on a composite index that measures whether children with special health care needs have adequate health insurance, receive basic preventive care, and receive medical care that is comprehensive, ongoing and family-centered.
When the Foundation released this report in November 2010, it also announced formation of a new California Collaborative for Children with Special Health Care Needs. This statewide organization will provide a mechanism for individuals and organizations to work together to address some of the issues documented in the report and create an enhanced system. The Collaborative will not replicate the activities of existing groups, but will seek to bring together a range of stakeholders to address issues that are common to most children with special health care needs.
At the same time, the Foundation maintained its support of ongoing efforts by parents groups to improve the system, providing strategic planning grants for Family Voices California and its youth group. These grants will help the organizations define their goals and strategies for the next few years.
During 2010, the Foundation also continued to invest in work by the State of California to support a Medicaid Waiver from the federal government. Waivers allow the states to implement innovative programs, and California's waiver will focus in part on restructuring California Children's Services, the largest public funder of services for children with special health care needs. Under the waiver, the state will test pilot models of various systems of care for these children. The Foundation funded consultant assistance for hospitals and physician groups to determine whether they would apply to be pilot sites. The Foundation also supported development of an evaluation design for the pilots.
Addressing another important issue for children with special needs, the Foundation invested in a project whose goal is to implement changes in medical education. This work is designed to ensure that pediatricians are familiar with the complexity represented by the special needs patient population, and that there are sufficient numbers of trained pediatricians to lead the medical home teams that will be crucial to the future well being of children. In a related effort, the Foundation also convened national experts to develop and promulgate a common definition of care coordination.
More information about the Foundation's work regarding children with special health care needs can be found at lpfch.org/programs/cshcn/.