PALO ALTO – Five new grants from the Lucile Packard Foundation for Children’s Health aim to bring renewed attention to health care inequities for children with special health care (CSHCN) and enhance diversity, equity, and inclusion efforts in the health care system.
The grants cover equity issues in four areas: marginalized CSHCN populations, transition to adult care, state equity initiatives, and family engagement in children’s hospitals.
“These groundbreaking grants build on our previous investments in creating a health care system that serves all children with special health care needs and their families,” said Holly Henry, director of the foundation’s Program for Children with Special Health Care Needs. “Our goal is to bring new attention to, and action on, the systemic inequities that hinder the health and well-being of this population of children, the majority of whom are children of color.”
Barriers, Inequities, and Policy Options for Youth with Special Health Care Needs Aging Out of Public Programs
National Alliance to Advance Adolescent Health
Transition from pediatric to adult care is one of the most challenging hurdles for youth with special health care needs, yet there has been little research, policy, and advocacy attention paid to this aging-out process. This project will focus particular attention on the experiences and needs of Black youth, who have higher rates of disability, are more likely to live in poverty, and are twice as likely as their White counterparts to be uninsured. This project will identify policies and strategies to reduce disruptions and inequities in care, and will provide recommendations for how to ensure and improve access to adult public benefits, specifically through four key providers: Medicaid, the Children’s Health Insurance Program, Supplemental Security Income, and Title V services.
Disability Inclusive Vision for Engaged Research and Service for Equity (DIVERSE) Collective
University of Pittsburgh Department of Physical Medicine and Rehabilitation
A field that has received little attention is health care inequities for children with disabilities and intersectional identities. These are children who have more than one identity that is associated with discrimination, oppression, or other disadvantages. This grant will support a research collaborative in developing a path toward improving health outcomes for this marginalized population of children. The project will identify best practices to address intersectional oppression, complete a literature review of previous scholarship, and conduct an evaluation of trends in intersectional childhood disability. The team also will mentor early career clinicians/researchers of color to help build a pipeline toward a more diverse workforce.
Supporting States to Improve Equitable Systems of Care for Children and Youth with Special Health Care Needs
National Academy for State Health Policy
Many states are eager to address health care inequities in their programs serving CYSHCN. To promote this work the foundation has over the past decade supported creation and dissemination of the National Standards for Systems Serving Children and Youth with Special Health Care Needs (CYSHCN), which have been adopted into the Medicaid and Title V programs of 45 states. The foundation also has funded National Care Coordination Standards.
This project will include a 50-state scan of states’ approaches to addressing health equity in systems improvements for CYSHCN, and an analysis of additional opportunities for progress. The findings will lay the groundwork for future equity work using the Standards as a framework. The project also will produce updated tools and information to support states in implementing both sets of Standards and measuring their impact.
Creation of a Parent Mentor Program to Meet the Health Equity Needs of Children and Families from Diverse Backgrounds
Lucile Packard Children’s Hospital Stanford
The current health care system perpetuates inequities for many diverse children and families. With this grant, Lucile Packard Children’s Hospital Stanford will create a Diversity, Equity, and Inclusion (DEI) Parent Mentor Program that will focus on Spanish-speaking parents with limited English proficiency, parents of children with developmental disabilities, parents of children in gender transition, and parents with differing faith and food practices. The team also will develop a training platform for use by other pediatric hospitals.
Building Capacity for Diversity, Equity, and Inclusion in Children’s Hospital Patient Family Advisory Councils
Institute for Patient- and Family-Centered Care
Patient Family Advisory Councils (PFACs) play an important role in children’s hospitals. These grant funds will be used to identify promising practices that can be used to promote DEI in these councils. The researchers will fill a gap in the field by developing information that can help hospitals recognize and understand critical issues and important actions needed for increasing PFAC diversity and for partnering with Patient and Family Advisors (PFAs) in their DEI initiatives. The project team will disseminate the results of an environmental scan and prepare a manuscript for publication in a peer-reviewed journal with the aim of reaching hospital leadership, individuals working in DEI within children’s hospitals, and PFAC leaders.
The Lucile Packard Foundation for Children’s Health unlocks philanthropy to transform health for all children and families - in our community and our world. Support for this work was provided by the Foundation’s Program for Children with Special Health Care Needs. We invest in creating a more efficient and equitable system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. Learn more at lpfch.org/CSHCN.