Addressing Challenges of Children with Medical Complexity

Drs. Renee Boss and Rebecca Seltzer, faculty members at the Berman Institute of Bioethics, hosted the Robert H. Levi Leadership Symposium, “Where can they live? The Ethical Challenges of Gaps in Community Supports, Services, and Placement Options for Children with Medical Complexity,” on February 4-5. While children with medical complexity and their families interact with multiple systems of care as they navigate complex medical and social needs, these systems tend to work in silos. The Levi Symposium offered a unique opportunity to bridge those gaps.

Leaders from across the various systems of care in Maryland that serve this population of children (i.e., healthcare, social services, Medicaid, Maryland Department of Health, case management, policy, law, advocacy) collaborated with with parents and national experts in policy, research, and clinical care of children with medical complexity (CMC). This 2-day symposium included a publically attended panel discussion, followed by an all-day invite-only working group.

For more information about the symposium and to learn more about the invited guests and progress, please visit the symposium website.

Approximately 100 guests attended the first event of the symposium, a public panel discussion titled “Defining ‘Good Outcomes’ for Children, Families, and Systems of Care in the Context of Pediatric Medical Complexity.” Panelists included:

• Marisa Berry, a parent of a child with medical complexity;
• Margaret Moon, MD, MPH, the Chief Medical Officer of Johns Hopkins Children’s Center;
• Debbie Marini, MSW, LCSW-C, Director of Placement and Permanency at the Social Services Administration (SSA) of the Maryland Department of Human Services (MDHS);
• Rebecca Jones Gaston, MSW, the Executive Director of the SSA at MDHS;
• Chris Feudtner, MD, PhD, MPH, an ethicist and complex care/palliative care physician at the Children’s Hospital of Philadelphia.

This diverse panel of speakers offered their unique perspectives on this topic, followed by an engaging Q+A discussion session with the audience. The panelists’ commentary and subsequent discussion regarding what defines “good” outcomes in this context helped set the stage and clarify objectives for the next day’s working group agenda.

During the full-day meeting, working group members came together to discuss what policies and practices exist (or are lacking) in Maryland to address the needs of CMC, especially as they relate to placements, supports, and services. They heard the perspectives of stakeholders across systems/agencies in Maryland, listened to parents share their stories of caring for a child with complex medical needs, learned from national experts about what is happening in other states, and brainstormed where to prioritize collaborative efforts to address the unmet needs of this population.

Improving access to high quality data, especially linked across systems, was highlighted as an important step to better understanding and tracking this population. One goal is to develop a cross-sector complex care consortium in Maryland to share data and work together to inform clinical, placement, and policy innovations.

The Levi Symposium sparked important cross-sector dialogue about caring for children with medical complexity and connected key stakeholders in the state of Maryland and beyond. Moving forward, invited guests will continue to collaborate in research, advocacy, and practice to enhance systems of care for children with medical complexity. Knowledge and perspectives gained through this symposium will be disseminated through scholarly publications.