Children with health complexity face unique medical and social factors that impact their health and engagement of health care services. Health systems play an important role in addressing both factors to build health and resilience.
A wide range of issues must be addressed to improve the system of care for children with special health care needs.Staff members of the Lucile Packard Foundation for Children’s Health presented an overview of topics that are a priority and related work that currently is under way to improve the system.
Health care providers, payers, and systems serving children, youth and families increasingly focus on family engagement as a strategy to improve health care delivery, enhance consumer and provider satisfaction, and reduce costs. Assessing how well an organization or agency is engaging families is a critical step in achieving these goals. Learn about a framework for assessing family engagement in systems change, models of success, and discover common barriers to incorporating meaningful family engagement in systems-level initiatives.
Proposed changes in health care payment, from fee-for-service to alternative, risk-sharing payment models, can have a substantial impact on health services for children, especially those with complex care needs. In addition, tying payment to value can increase use of ambulatory and preventive services and encourage creative outreach. However, abrupt changes can interrupt continuity and reduce access to care.
What ethical considerations should guide the design and evaluation of systems of care for children with medical complexity? There are inevitable tradeoffs that any complex health care system must confront when attempting to achieve multiple worthy goals, from benefitting individual patients and families and securing fair distribution of benefits across populations, to operating in a manner that is transparent and free from conflicts of interest.
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.
While self-management support has been a component of adult chronic care for decades, it is just emerging as a critical need for children, especially those with complex conditions. Self-management is a shared undertaking between the child, their parents and care providers, and must take into account the child’s developmental status and the family’s capacities. Clinicians need routine, standardized approaches and tools to address the unique needs of children and their families including assessing self-management skills, collaboratively setting goals, and promoting competence and autonomy in youth.
Care coordination is an important approach to addressing the fragmented care that children with medical complexity often encounter. What are optimal care coordination services? How does care coordination intersect with care integration and case management? Learn best practices and how to implement a process that will achieve improved outcomes and value for children with special health care needs and their families.
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.
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.