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Sufficient access to services for children with medical complexity varies considerably by state, geographic region, and payer. Families, advocates, and health care professionals need to understand children’s rights. Policymakers and payers must help support reliable and appropriate coverage and benefits. Learn how medical-legal partnerships and other forms of advocacy can protect the rights of children and support families in an era of cost containment. 

Discussing the article, Protecting Rights of Children with Medical Complexity in an Era of Spending Reduction, the panel reviewed what government and private health plans are doing and could do to promote optimal health, development, and family functioning for children with medical complexity. 

This article is part of a supplement to Pediatrics entitled, “Building Systems that Work for Children with Complex Health Care Needs.”

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Jane Perkins, JD, MPH

Legal Director, National Health Law Program

Jane Perkins is the Legal Director of the National Health Law Program (NHeLP), a public interest law firm working to advance access to quality health care and protect the legal rights of low-income people and people with disabilities. She oversees NHeLP’s legal and policy work, manages the Program’s litigation docket, and litigates cases in state and federal courts. She is also a senior attorney with the Southeast Coordinating Center of the Network for Public Health Law, specializing in health reform and maternal and child health.

Jeffrey L. Goldhagen, MD, MPH

Professor of Pediatrics, University of Florida College of Medicine-Jacksonville, Chief, Division of Community Pediatrics, President, International Society for Social Pediatrics and Child Health

Dr. Jeffrey L. Goldhagen is Professor of Pediatrics at the University of Florida-Jacksonville and Chief of the Division of Community and Societal Pediatrics. He previously served as Director of the Duval County Health Department for 12 years. He has served on the faculty of the University of Minnesota, Case Western Reserve University, Addis Ababa University, and currently at the University of Florida. He is a co-founder of the Society of Equity in Child Health and the Global Alliance for Child Rights and Health Equity.

Edwin Simpser, MD

President and CEO, St. Mary’s Healthcare System for Children

Dr. Edwin Simpser is President and CEO of St. Mary's Healthcare System for Children. He is a practicing pediatrician and pediatric gastroenterologist, and currently on the faculty of the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell. He is Co-Founder and President of the Pediatric Complex Care Association. He continues to provide direct medical care to children as an attending physician at the Department of Pediatrics at North Shore University Hospital, New York Hospital, and the Steven and Alexandra Cohen Children’s Medical Center.

Rishi K. Agrawal, MD, MPH

Associate Professor of Pediatrics, Northwestern University Feinberg School of Medicine, Pediatric Specialist, Lurie and La Rabida Children’s Hospital in Chicago

Dr. Rishi K. Agrawal is an Associate Professor of Pediatrics at Northwestern University Feinberg School of Medicine and is a pediatric hospitalist at Lurie and La Rabida Children's Hospital in Chicago.  He is co-chair of the Academic Pediatric Association Complex Care Special Interest Group and has a research and advocacy interest in Children with Medical Complexity.  

Related Grants

Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This fact sheet explains the methods used in a study of California caregivers of CYSHCN, including the study’s purpose, survey instrument, sample, survey distribution, data analysis, and more.