Children with medical complexity have special health care needs that require extensive use of health care services. A child is considered medically complex if they fall into two or more of the following categories:

• One or more chronic health condition(s) associated with significant morbidity or mortality;
• High-risk or vulnerable population with functional limitations that impact their ability to perform Activities of Daily Living (ADLs);
• High health care needs or utilization patterns, including requiring multiple (3 or more) subspecialties, therapists, and/or surgeries;
• Continuous dependence on technology to overcome functional limitations and maintain a basic quality of life.

The Children with Medical Complexity Steering Committee developed this broad definition of children with medical complexity to aid in the development of a Delaware’s Plan for Managing the Health Care Needs of Children with Medical Complexity, as well as to assist in the work this group is continuing to embark on. This definition is not intended to serve as the basis for denying or authorizing care and/or payment for care for children served through the Delaware Medicaid Program.

Private duty nursing and self-directed option for pediatric care and respite services

Children with medical complexity often have several major medical conditions occurring at the same time, which makes them eligible to receive private duty nursing in their homes. However, since the pandemic, there has been a significant reduction in the availability of private duty nurses to meet the needs of these children. The Division of Medicaid and Medical Assistance is using findings from a University of Delaware Center for Research in Education and Social Policy workforce capacity study to increase the availability of private duty nurses.

Delaware also offers a self-directed option for parents on behalf of children who receive personal care and respite services. This option gives families the flexibility to hire, for example, a neighbor, friend, or family member, including a legally responsible family member, as the child’s service provider.

Children with Medical Complexity Advisory Committee (CMCAC)

The Children with Medical Complexity Advisory Committee (CMCAC) meets quarterly to strengthen the system of care, increase collaboration across agencies, encourage community involvement, and ultimately ensure that every child with medical complexity has the opportunity to receive the adequate and appropriate health care services they need and deserve. 

CMCAC meetings are open to the public. Meeting dates, times, and locations are posted on the State’s public meeting calendar at https://publicmeetings.delaware.gov.

CMCAC Charter and Guiding Principles

• Children with Medical Complexity Advisory Committee Charter
• Children with Medical Complexity Advisory Committee Guiding Principles
• Delaware’s Plan for Managing the Health Care Needs of Children with Medical Complexity 

Documents & Reports