As the proportion of children with chronic conditions has increased exponentially over the last decades, there has been necessity for evolution of definitions, care models, and systems for their care. Chapter 2 discusses the further refinement of the definition of children with medical complexity and explores in depth the development of models of care for these children and how the workforce has started to meet the needs of this growing population. This chapter also touches on how these systems and models (...) are beginning to integrate into the established pediatric frameworks of clinical care, financial reimbursement, and community supports. This includes discussion of shared decision making, coordination of care, and examples of integration between subspecialities, including palliative care. The burgeoning and critical subfield of transitional care to adulthood for children with medical complexity is also touched on. (shrink)

This chapter focuses on the critical policies and practices aimed at enhancing the value of care for children with medical complexity (CMC). CMC represent a critical demographic within pediatric healthcare, necessitating targeted policies to enhance care value. Despite constituting only 1.5% of the pediatric population, CMC account for a substantial proportion of healthcare utilization and expenditure. Direct costs alone constitute over one-third of total pediatric healthcare expenses, while indirect costs remain challenging to quantify yet significantly high. Over the past two (...) decades, specialized care models have been developed to address the unique needs of CMC. However, existing payment models have struggled to keep pace. Recent advancements include reimbursement for indirect care, care coordination, and waivers to traditional Medicare eligibility. These emerging payment models hold promise for more effectively meeting the needs of the CMC population, improving the quality of their care, and reducing the financial burden on healthcare systems. (shrink)

Children with medical complexity (CMC) are a small, rapidly growing, and impactful pediatric population. Healthcare systems designed for typically developing children cannot singlehandedly meet the needs of CMC and their families. In this chapter, we discuss individual and collective experiences over the last two decades and lessons learned to envision a better future system of care for CMC and their families. Families, providers, payers, policy makers, and community systems agree that CMC and their families require effectively functioning systems of healthcare (...) that are accessible, high-value, and responsive. We are called to prepare a future workforce that will thrive in appropriately resourced models of care delivery. We invite providers, policy makers, and communities to partner with families in designing these systems. CMC and their families remind us that humanism, kindness, and community are the reasons we invest in the public health of caring. (shrink)

Having a child with medical complexity (CMC) greatly impacts parents and siblings, and can negatively affect the socioeconomic status of the family. Supporting families in caring for their children is paramount to improving the health and experiences of CMC. This includes supporting the siblings, seeking out creative ways to provide home nursing, and finding resources such as state Medicaid waiver programs to finance needed equipment and services. National organizations, often parent-led, can provide additional layers of support for families in finding (...) resources. (shrink)

Children with medical complexity are a small but important part of the pediatric population. They make up only 1% of all children but utilize a significant portion of healthcare spending. Their complex medical care can be a source of strain on the families and the health systems in which they participate. Creating systems that support these children are beneficial to the children, their families, and to pediatric healthcare in general. Complex care programs are an emerging part of the solution, leading (...) to more streamlined care. These children need specialized support at school and in the community, and understanding how this all interplays with their health and well-being is essential. This chapter serves as an introduction to the issues that these children and families face which will be further explored in later chapters. (shrink)

The importance of medical ethics in the care of children with medical complexity (CMC) is evidenced across the healthcare continuum, from individual children and their families to provider teams, and from regional to national systems of care. Understanding our recent US history of disability rights and experiences of ableism heightens our awareness of implicit biases and influences our approaches to care. CMC are best served by comprehensive clinical teams that adapt to the changing needs over time, with continuous attention to (...) the unique values and goals of each child and family. Across the lifespan, as CMC and their families encounter critical decision points, shared decision-making processes in goal-directed approaches can support all stakeholders in balancing potential over- and under-utilization of medical care. Medical decisions and healthcare transitions can be optimized when grounded on the pillars of medical ethics: nonmaleficence, beneficence, autonomy, and justice. (shrink)

This book describes the state of the art of pediatric complex care, sharing the authors' decades of experience in an academic health center to illustrate points. The authors are pediatric generalist and subspecialist providers, among others, who care for children with medical complexity in a Pediatric Complex Care program. Children with medical complexity (CMC) are a small yet impactful pediatric population, a subset of children with special healthcare needs that include multi-system, non-categorical, chronic conditions, high resource and technology dependencies, medical (...) fragility, and functional impairments. CMC do not fit into traditional systems of care. They require the continuous collaboration of pediatric subspecialists, community and public health partners, and family caregivers. The field of Pediatric Complex Care is rapidly evolving, yet lacks a well-prepared workforce built on clear educational competencies and clinical guidelines. In this compact volume, the authors review models of care for CMC, and how these models intersect with larger public health systems, dependent on collaborative networks of community-based and family partnerships. They explore ethical considerations, including implications for policy and practice. Among the topics covered are: The Specialty and Scope of Complex Care Pediatrics Ethical Considerations in the Care of Children with Medical Complexity Implications for Policy and Practice Healthcare Delivery for Children with Medical Complexity: The State of the Art and Future Directions is an essential resource for all medical professionals who care for CMC, public policy makers, medical educators, healthcare leaders, and community partners and stakeholders. (shrink)