Levi Symposium 2019: Where can they live? The Ethical Challenges of Gaps in Community Supports, Services, and Placement Options for Children with Medical Complexity

The number of children with medical complexity (CMC) is steadily rising, as more and more children survive once-fatal conditions but have chronic dependence on medical technologies and therapies. While these children may live years to decades, they depend on caregivers and a system of supports and services to provide for their intensive daily care needs. For parents who are struggling with their child’s complex needs, additional supports and services to help children remain at home (ie. home nursing, respite, case management, financial support, or transportation) may not be reliably available. For children who must be placed elsewhere to receive essential care and supervision, few options exist. Acute care and rehab hospitals can address children’s medical needs but hospitalizations of months to years restrict quality of life and expend limited resources. Medical foster care homes can provide a family home setting, but are often in short supply. Pediatric long-term care facilities are not available in many states, including Maryland, due to efforts at deinstitutionalization.

These children and families often interact with multiple systems of care as they navigate complex medical and social needs. This Levi Symposium brought together diverse stakeholders from those different systems of care across Maryland (ie. health care, child welfare, Medicaid, Department of Health, law, advocacy, etc), along with national CMC experts.  The public event included a panel discussion entitled “Defining ‘Good Outcomes’ for Children, Families, and Systems of Care in the Context of Pediatric Medical Complexity.” This discussion help set the stage for our private working group where our stakeholders discussed 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. We heard the perspectives of stakeholders across systems/agencies in Maryland, learned from national experts about what is happening in other states, and then worked together to brainstorm what practices/policies should be developed across systems in Maryland to address the needs of CMC in regard to placement/services/supports.