Building Systems that Work for Children with Complex Health Care Needs

The Lucile Packard Foundation for Children’s Health works to ensure that children and youth with special needs will be served by a family-centered system that provides ready access to a comprehensive array of high-quality, coordinated services designed and delivered to efficiently and effectively meet their unique physical, emotional, social and developmental needs. We are pleased to sponsor the March 2018 issue of the PEDIATRICS Supplement: Building Systems that Work for Children with Complex Health Care Needs. These articles help to clarify some of the difficult, systemic issues and challenges affecting health care for these children, and point the way toward their resolution.

Throughout 2018 we will engage in discussions with authors and experts in the field to explore ways we can improve the system of care for children with chronic and complex health care needs. Check back often for updates!

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A Conversation on Models of Care Delivery for Children with Medical Complexity
Date: June 28, 2018
Time: 10-11 am Pacific Time; 1-2 pm Eastern Time; 6-7 pm British Standard Time

Improvements in care delivery for children with medical complexity are becoming a major focus of national and local health care and policy initiatives. A number of new models have been developed, with promising examples of enhanced care coordination and family engagement.

Join us as we explore innovative care delivery models and discuss current literature. We will have a lively discussion on the article, Models of Care Delivery for Children with Medical Complexity, with the lead author and experts in the field. We suggest attendees read the article prior to the event. Audience Q&A is highly encouraged. Attendees can listen via web or phone. Read more.

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UPCOMING CONVERSATIONS

Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?
Date: July 26, 2018

ARCHIVED CONVERSATIONS

A Conversation on Meaningful Family Engagement, from Clinical Care to Health Policy
Date: June 6, 2018

A Conversation on the Emergence of Pediatric Complex Care
Date: April 10, 2018

 

 

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A Conversation on Meaningful Family Engagement, from Clinical Care to Health Policy

Engaging with families is vital to transforming the health care system and positively impacting the life course of vulnerable populations. Families have extensive experience in partnering with professionals to improve systems of care, are organized and connected across the country, and stand ready to assist at every level of next efforts for improvement. Learn how to meaningfully involve families at every level of health care systems and engage them as critical partners in designing policies that will improve care for all children.

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A State Multi-Sector Framework for Supporting Children and Youth with Special Health Care Needs

Although federal programs are a major source of support for children with special health care needs and their families, the state in which a family lives can heavily influence whether the child has access to quality health care and other needed services. State and local statutes and regulations often determine eligibility criteria and requirements for receiving care. A new report from Child Trends, funded by the Lucile Packard Foundation for Children’s Health, offers a framework for state agencies and other stakeholders to assess and improve how a state provides care across health, education, justice and other systems. 

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Project Leadership: A Growing Network of Family Advocates

Families of CSHCN are the experts on their children’s health care and on how systems and services could function more effectively to meet their needs. However, many family members lack the skills, confidence, and support to pursue advocacy and leadership roles in system change. That’s beginning to change in California.

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Threading the Labyrinth: Why Children in California with Special Health Care Needs Endure Delays in Securing the Medical Equipment and Supplies They Need

Families and health care providers frequently report long delays in obtaining essential supplies and equipment such as wheelchairs, walkers, ventilators, and hospital beds for children with complex conditions. Based on dozens of interviews, analysis of family surveys, and examination of state and county policies, this report outlines the multiple obstacles that contribute to these sometimes devastating delays, and makes recommendations for change.  

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