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.
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.
Novel care delivery models in which care coordination and other services to children with medical complexity are provided are a focus of national and local health care and policy initiatives. This article explores the rapid proliferation in the creation of new models and examines their unique advantages and disadvantages.
Increased attention to children with medical complexity has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to improve care.
Dedicated care coordination is increasingly seen as key to addressing the fragmented care that children with medical complexity often encounter. Authors discuss the need for infrastructure building, design and implementation leadership, use of care coordination tools and training modules, and appropriate resource allocation under new payment models.