Children with Medical Complexity

After receiving instructions from the Delaware General Assembly in the FY 2018 budget bill, the Delaware Health and Social Services, Division of Medicaid and Medical Assistance (DMMA), recently released the study “Delaware’s Plan for Managing the Health Care Needs of Children with Medical Complexity”.

The state’s goal is to work to develop longer term strategies for this fast growing population of children with intensive conditions that require extensive healthcare services and a coordinated care delivery system.  

Delaware formed the “Children with Medical Complexity (CMC) Steering Committee” in 2017 to initiate a comprehensive approach to clearly identify the populations needing the services, evaluate access to services for the children, and evaluate models of care.

The Committee is determined to improve the quality of data and health IT plus develop tools to help patients and families make informed decisions about the health of their children. The Delaware study found that it is also important to do a comprehensive data analysis especially focused on CMC, so service gaps can be identified that would impact care coordination and healthcare delivery.

The Committee also recommends studying innovative care delivery models and appropriate payment structures, creating quality metrics and health outcome deliverables, plus use the data to find areas where cost reductions could take place but also be effective.

The next step was for the Committee to form the “Population Workgroup” with the goal to build a model of care using the Patient and Family-Centered Care (PFCC) approach. When using this approach, patients and families can determine how they will participate in care and decision-making and how to develop good care coordination within this model of care.

It has been determined that to use PFCC effectively, a Pediatric Care Coordinator (PCC) is needed to address interrelated medical, social, developmental, behavioral, education needs, and discuss financial needs to achieve optimal health and wellness outcomes.

Care Coordination for pediatric populations necessitates sustaining caring relationships among children, youth, families and community providers as well as to ensure seamless delivery of care for the child across the continuum of care in various settings. This includes care in primary care, subspecialties, emergency departments, and in the community.

Specifically, the CMC Steering Committee advocated strengthening systems of care by:

  • Providing a care plan that respects family and parent/caregiver strengths and goals to be developed, shared, and implemented by the family PCP and specialists, but can include other systems if appropriate
  • Identifying PCPs that are willing to provide care coordination and become a medical home and are willing to work with children with medical complexities.
  • Considering a sub-network of specialists that may be willing to give priority scheduling to CMCs.
  • Using health information technology to effectively deliver and continually monitor care coordination and the effectiveness of service delivery. Explore the use of telemedicine to reduce wait times and exposure of CMCs to unnecessary illnesses
  • Assisting parents/caregivers in navigating prior authorizations for services, prescription renewals and refills for medications, and help to obtain durable medical equipment, supplies, plus other processes as they arise.
  • Supporting and facilitating all care transitions, including but not limited to the hospital setting. Transitions from hospital to home transition, practice to practice, and transitioning children from pediatric to adult systems of care must be considered
  • Providing a bridge between the multiple payers where applicable. This may include open communication with private insurance companies, DMMA, and/or other agencies


Go to to view the report.

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