• Event and Webinar Recaps

    A Conversation on Protecting Rights of Children with Medical Complexity in an Era of Spending Reduction

    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. 

  • Journal Articles

    A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health

    Children with medical complexity account for about 40 percent of pediatric Medicaid spending, yet comprise only 3 percent of the pediatric population. Currently, no population measures exist to describe these children, who have diverse conditions of variable severity. A study published in Pediatrics suggests 10 potential outcome domains as a starting point. 

  • Issue Briefs

    A Better Way: Team Care for Children with Special Health Care Needs

    Team-based health care is a key component of the Chronic Care Model, which has shown to be successful for adults with chronic conditions.  As the number of children with chronic conditions grows, and payers seek innovative ways to increase efficiency and effectiveness, it may be time to invest in restructuring pediatric practice to promote team-based care. 

  • Event and Webinar Recaps

    A Conversation on Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions

    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. 

  • Insights

    Learning by Doing: Maternal Depression Screening and Family Psychosocial Risk Assessment

    Child health professionals increasingly are being asked to include screening for adverse early experiences as part of routine preventive pediatric care. Screening and providing appropriate follow-up would be a huge challenge for most practices. A good first step might be to incorporate routine screening for maternal depression, one of the most common risk factors for family psychosocial problems.

  • Event and Webinar Recaps

    A Conversation on Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?

    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. 

  • Insights

    The Mental Health Journey of a Mother and Daughter

    When Magaly was 11, her mother, Olga, found suicide plans on her phone. Six years later, they continue to navigate the challenges of Magaly’s diagnosis of depression and psychosis. Their journey touches upon the importance of early identification of mental health issues, access to care, and the struggles for support. Children with chronic and complex physical conditions often have mental and emotional issues that go unrecognized and untreated. 

  • Research & Reports

    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. 

  • Event and Webinar Recaps

    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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