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.
Designing clinical programs for children with medical complexity often includes the need to implement a system of risk stratification. Authors use the framework of an ethical evaluation of a health care program to examine what the task of risk stratification might entail and provide recommendations to help ensure that programs avoid potentially ethically problematic situations and practices.
Self-management improves health outcomes in chronic illness not only by improving adherence to the treatment plan but also by building the individual’s capacity to navigate challenges and solve problems. This article discusses the need for clinicians to have standardized approaches and tools to assess and promote self-management for youth and adolescents.
Alternative payment models promote novel care-delivery systems and greater accountability for health outcomes With a focus on population health, patient-centered medical homes, and care coordination, this model holds the potential to promote care-delivery systems that address the unique needs of children with medical complexity, including nonmedical needs and the social determinants of health.
Sufficient access to needed services for children with medical complexity is not assured and varies considerably by payer, many of whom who face pressures to control health spending. This article reviews the rights of children with medical complexity in Medicaid, the Children’s Health Insurance Program, and various forms of private health insurance to receive services that are necessary to promote optimal health, development, and family functioning.