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Seven Grants Aim to Improve Care for Children with Special Health Needs

PALO ALTO – Seven grants awarded this month by the Lucile Packard Foundation for Children’s Health address a breadth of issues designed to improve how the health care system functions for Children with Special Health Care Needs (CSHCN) and their families. The new funding supports projects aimed at bolstering family involvement in policymaking, improving hospital discharge planning, and developing a scorecard that will compare services provided for CSHCN and their families on a state-by-state basis, among others.

“This set of grants builds on our previous work by enhancing care coordination, and promoting the involvement of families in all aspects of the systems upon which they and their children with special needs depend,” said Edward Schor, MD, senior vice president at the foundation.

The new grants: 

Assessing Family Engagement: Family involvement in policymaking is acknowledged as an effective strategy for improving health care quality, but there is no current method to evaluate how well families are being supported or the contributions they are making to policies and programs. Building on a previous grant in which an assessment framework was developed, Albuquerque-based Family Voices will lead creation of a tool to assess the level of family engagement in health care systems, pilot-test the tool, and develop resources to help improve family engagement.

Family Engagement in Policy: Expanding an ongoing  project originally funded in 2013, Family Voices of California will enhance the  support and education provided to parents previously trained to engage in family advocacy, with the goal of involving them more deeply in program development and implementation and policymaking. This grant will expand staffing for Project Leadership, adding a Family Engagement Manager to provide families with more training and additional opportunities to apply their expertise.

Chronic Care Planning: A grant to Johns Hopkins University will further previously funded work to create a standardized tool that families and health care providers can use to create a comprehensive care plan that documents the child’s and family’s needs and goals, and outlines proposed treatment and accountability. The current grant will fund pilot testing of the tool, revisions, translation to Spanish, development of a user’s manual and initial dissemination. 

Nurse-Led Hospital Discharge Learning Collaborative: Hospital discharge standards that set goals for post-hospital care and develop a plan to achieve those goals are essential for children to lead as normal a life as possible and avoid future hospitalizations. Building on standards previously developed with foundation support, staff at Children’s Hospital Los Angeles will lead a learning collaborative of nurse-led teams in California children’s hospitals to pilot adoption of those discharge standards and create tools and guides for potential use by other hospitals. 

Monitoring Implementation of California’s Whole-Child Model: The Children’s Regional Integrated Service System (CRISS), which is a consortium that works on policy issues related to the California Children’s Services (CCS) program, will use its grant to monitor the transfer of some CCS-covered children into Medi-Cal managed care under what is known as the Whole-Child Model. In addition, CRISS will organize a “best-practices” conference to help ensure high-quality care in the CCS program generally. 

Improving the Quality of Home Health Care: A small but growing population of children with special needs rely on in-home health care services to remain at home with their families, yet obtaining adequate ongoing care often is a challenge. At present no instrument exists to evaluate the quality of pediatric home health care. This grant will support researchers at Lurie Children’s Hospital in Chicago in developing a measurement instrument to evaluate access to, and quality of, home health care for children with medical complexity, as reported by patients and their parents. The instrument will assess issues such as timeliness, efficiency, effectiveness, safety, equity, expense and patient-centeredness. A successful project will yield a tool that can be used broadly for quality monitoring and improvement. 

A State Scorecard: Evidence suggests that considerable variability exists between states in access, quality, scope, and variety of services provided for children with special health care needs, but detailed information is not available to families or policymakers. This grant will support Child Trends in the first of two phases of developing a framework for a scorecard that would provide state-specific comparative information on publicly funded services for children with special health care needs.  



About the Lucile Packard Foundation for Children’s Health: 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. The Foundation works in alignment with Lucile Packard Children’s Hospital Stanford and the child health programs of Stanford University. 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.