Discover guidance and resources to support pediatricians and health care teams caring for children with medical complexity. Learn ways to build successful partnerships with their families and caregivers.
Children with Medical Complexity Overview
According to the AAP clinical report, Recognition and Management of Medical Complexity, children with medical complexity (CMC), a subset of children and youth with special health care needs (CYSHCN), have multiple significant chronic health problems, functional limitations, high health care and resource need and/or utilization. They may need medical technological devices to improve or sustain life and daily function.
Although children with medical complexity represent <1% of children in the U.S., they account for more than one-third of total pediatric healthcare costs. Efforts to improve the quality of their health care, better support their families and increase cost-effectiveness have been challenging due in part to the lack of a consensus-based definition of CMC, the wide variety of their underlying conditions, and the rare nature of some of these conditions. The AAP clinical report expands the definition of children with medical complexity as those who have medical and/or behavioral conditions that impact two or more body systems, have high utilization rates and needs for healthcare services, with technological assistance or dependence.
There is growing acknowledgement that social determinants of health and stressed family function add further complexity to these children’s care and may impact both utilization and clinical outcomes. The models of care and principles of care for CMC are evolving as well, with the medical home model and care integration considered a foundational feature of optimal care.
The AAP provides recommendations and guidelines to support pediatricians and other health care professionals working with children with medical complexity.
Resources for Families
The goals of the Catalyst Center are to promote universal, continuous, and affordable coverage for all CYSHCN; close benefit and financing gaps; promote payment for additional services; and build sustainable capacity to promote financing of care. This Catalyst Center directory provides links to community-based and direct service organizations that may be helpful to CMC and their families.
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs and disabilities. By connecting a network of family organizations, they support families of children and youth with special healthcare needs. Visit here to connect to the Family Voices network and to find a family-to-family health information center in your state or territory.
Parent to Parent USA supports a national network of programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs. Learn and share resources to support families of CYSHCN.
The National Resource Center for Patient/Family-Centered Medical Home (NRC-PFCMH) strengthens the systems of services for children and youth with special health care needs (CYSHCN) and their families by providing technical assistance, support, and training on the implementation of the patient/family-centered medical home to pediatricians, clinicians, state Title V programs, families and others. The NRC-PFCMH page for families and caregivers has tools and resources that will assist families in partnering with their child’s medical home successfully.
The WI Department of Health Services developed goal cards as a guide to help CMC and their families start a conversation on identifying goals that are appropriate for their child and as a catalyst for conversations about goals. The goal cards can be discussed and shared with your child’s pediatrician or other care providers.
Support for the development of this webpage was provided in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UJ6MC32737, Health Care Delivery System Innovations for Children with Medical Complexity, as part of an award totaling $2,700,000 per year with zero percentage financed with non-governmental sources. The contents are those of the authors and do not necessarily represent the official views of, nor an endorsement by, HRSA, HHS or the U.S. Government.
American Academy of Pediatrics