Publications

What ethical considerations should guide the design and evaluation of systems of care for children with medical complexity? There are inevitable tradeoffs that any complex health care system must confront when attempting to achieve multiple worthy goals, from benefitting individual patients and families and securing fair distribution of benefits across populations, to operating in a manner that is transparent and free from conflicts of interest. 

Whether it’s facing the shock of a first diagnosis or responding to the many challenges along the way, parents of children with special health care needs often find that their most highly valued source of support is an experienced and knowledgeable parent who has navigated the same path. But where to find such a parent? Family-to-Family Health Information Centers may provide the answer.

Sufficient access to services for children with medical complexity varies considerably by state, geographic region, and payer. Families, advocates, and health care professionals need to understand children’s rights. Policymakers and payers must help support reliable and appropriate coverage and benefits. Learn how medical-legal partnerships and other forms of advocacy can protect the rights of children and support families in an era of cost containment. 

Children with medical complexity account for about 40 percent of pediatric Medicaid spending, yet comprise only 3 percent of the pediatric population. Currently, no population measures exist to describe these children, who have diverse conditions of variable severity. A study published in Pediatrics suggests 10 potential outcome domains as a starting point. 

While self-management support has been a component of adult chronic care for decades, it is just emerging as a critical need for children, especially those with complex conditions. Self-management is a shared undertaking between the child, their parents and care providers, and must take into account the child’s developmental status and the family’s capacities. Clinicians need routine, standardized approaches and tools to address the unique needs of children and their families including assessing self-management skills, collaboratively setting goals, and promoting competence and autonomy in youth. 

Care coordination is an important approach to addressing the fragmented care that children with medical complexity often encounter. What are optimal care coordination services? How does care coordination intersect with care integration and case management? Learn best practices and how to implement a process that will achieve improved outcomes and value for children with special health care needs and their families. 

Child health professionals increasingly are being asked to include screening for adverse early experiences as part of routine preventive pediatric care. Screening and providing appropriate follow-up would be a huge challenge for most practices. A good first step might be to incorporate routine screening for maternal depression, one of the most common risk factors for family psychosocial problems.

Improvements in care delivery for children with medical complexity are becoming a major focus of national and local health care and policy initiatives. A number of new models have been developed, with promising examples of enhanced care coordination and family engagement.