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Care Coordination Standards, COVID-19 Impact on CSHCN Are Among Topics of New Grants

PALO ALTO – Four grants recently awarded by the Lucile Packard Foundation for Children’s Health address the adoption of care coordination standards, the impact of COVID-19 policy changes on CSHCN, family engagement in California policymaking, and California’s responses to its Title V needs assessments.

The grants:

Advancing National Standards for Children and Youth with Special Health Care Needs
National Academy for State Health Policy (NASHP)

In spite of widespread recognition of the importance and benefits of care coordination, many states report challenges around implementing care coordination that fully and effectively meets the needs of children with special health care needs and their families. National Care Coordination Standards, developed by NASHP with previous funding from the Foundation, have been completed and will be released in early fall of 2020. This grant funding will support dissemination and implementation of the Care Coordination Standards, as well as the National Standards for CYSHCN, by enabling NASHP to provide technical assistance, quality measurement and financing resources, and support to state Medicaid agencies, state Title V CYSHCN programs, health plans, families of CYSHCN, and others.

Assessing Trends of COVID-19-related Health System Changes with Implications for Children and Youth with Special Health Care Needs
Health Management Associates, Inc.

In response to the COVID-19 pandemic, states are rapidly establishing new funding mechanisms and implementing emergency regulations, while providers are deploying innovative technologies to connect with their patients. It is unclear how these changes will affect children and youth with special health care needs (CYSHCN) and their families. The goal of this project is to examine how COVID-19 and the responses by federal and state governments, health systems, and providers affect health care for CYSHCN in both the short and long term.

From Assessing Needs to Taking Action
Family Health Outcomes Project, Regents of the University of California, San Francisco

California children with special health care needs (CSHCN) and their families receive health care and support services from state agencies that are funded in part through a federal Title V Maternal and Child Health Services Block Grant. Every five years, the Maternal and Child Health Bureau conducts a needs assessment to monitor the progress of the Title V programs it funds. The objective of this project is to determine how and why progress has been slow or hindered on the implementation of Action Plans established through the last four needs assessments in California, and to make recommendations for improving progress toward better care.

Legislative Analysis of Family Engagement in California Organizations
Children Now

State policy decisions about children’s health and well-being are made far too often without drawing on the experience and expertise of parents, caregivers, and youth themselves. This project is a continuation of a past Foundation grant to Children Now under which the California Research Bureau collected data on family engagement policies within state agencies serving children. The goal of this grant is to produce an official, government-sanctioned baseline report on all opportunities for families to engage in state policymaking conversations. Advocacy organizations will be encouraged to use the report to urge policymakers to create additional family engagement roles, and to recruit partners to press for these opportunities.


About the Foundation: The Lucile Packard Foundation for Children’s Health is a public charity, founded in 1997. Its mission is to elevate the priority of children’s health, and to increase the quality and accessibility of children’s health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation works in alignment with Lucile Packard Children’s Hospital Stanford and the child health programs of Stanford University.