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.
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.
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.
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.
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.
New research from Mathematica Policy Research weighs the question: “Can we draw lessons from Medicare to improve care coordination for children with special health care needs - especially those covered by Medicaid?” The answer is yes.
How is it possible to assess whether an organization or government agency truly embraces family engagement in its work? This new issue brief from Family Voices provides a framework for asking the key questions.
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.
When families are engaged in their children’s care – including being provided with the support necessary to allow meaningful participation – health care systems improve, the quality of care improves, and children and families are better served. This brief analyzes results from a survey of county CCS administrators on how families are currently engaged in their programs, and provides suggestions for how family roles could be enhanced.
Families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for children with medical complexity. Written by a group of parents, this article provides an overview of the demands of managing care from their unique perspective.