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Another Voice for Children with Medical Complexity

Roy C. Maynard, M.D., is the Medical Director for PHS. He serves as PHS’s clinical leader, working with the team to provide consultation and advice to ensure quality and effective care to children and their families in their own homes. He also leads implementation of clinical policies, procedures and programs to further enhance the best possible care for each child. He is a Neonatologist and Pediatric Pulmonologist, and serves as a staff physician at Children’s Hospitals and Clinics in Minneapolis, Minn. 


This past December, I was fortunate to have been invited to a 2-day educational symposium titled Designing Systems That Work for Children with Complex Health Care Needs in Washington DC. This event, which was arranged by the Lucile Packard Foundation for Children’s Health, was driven by a recognition that there are inefficiencies in current health care delivery for this special population of children that need to be addressed.

Excellent speakers from all over the United States were invited to speak on various subjects related to children with special health care needs. Topics included care planning and coordination, models of co-management and team care, costs, financing, and payment for complex care.

The Five D’s

One presentation by Dr. David Keller, MD, in a session covering national health policy and children with health complexity, addressed the need for measures of quality and performance in child health to reflect the “Five D’s”:

  • Developmental change (looking at life-course outcomes with multiple inputs)
  • Dependency (Need to include families)
  • Differential epidemiology (Need to focus on behavioral health, mental health, and school)
  • Demographic patterns (Need to account for diversity and poverty)
  • Dollars (Need to reward incent with more than shared savings)

Although less than 1% of children are identified as medically complex, this increasing population consumes a disproportionate amount of health care resources. Up to 25% of pediatric hospital days and 40% of hospital charges are credited to children with medical complexity (CMC). Current estimates are that expenditures for children with CMC utilizes one-third of health care dollars spent on children and that 80% of those dollars is accounted for by hospitalization of CMC.

Planning and coordination

Another topic of focus during this symposium was care planning and coordination. This is a familiar topic to physicians and families alike, as health care professionals make efforts to coordinate care as comprehensively as possible to make patients’ lives easier. It is undoubtedly a component of healthcare that is consistently improving, but also has ample opportunity for growth in the future.

During a presentation by Dennis Kuo, MD, he referenced a care map that accurately depicts just how complex is it to care for a child with special needs – originally drawn by a mother after she tried to communicate how much goes into raising a child with complex health care needs. You can see that care map here.

Teaming up to improve care

Efforts are being made across the country to improve the quality of care delivery for CMC and their families without adding additional costs to health care systems. The pediatric medical home and pediatric complex care programs being developed by primary care practices and pediatric hospitals respectively are 2 examples fostering improvements in care for CMC.

Families caring for CMC are not alone; health care providers nationwide are laboring to improve the health care experience for those taking care of the child.

Originally published: January 26, 2016

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