• Article
  • November 8, 2017

Caring for Children with Medical Complexity with Help from Parents, Peer Institutions

Editor's note: A team from Children's National Health System presented elements of their work on the CARE Award at the 2017 Annual Leadership Conference. Here's a recap of some of that work we published this year. 

This is the seventh installment in a series on the CARE Award: "Coordinating All Resources Effectively." CARE is the basis of a national hallmark study aimed at improving quality outcomes and reducing costs of care for children with complex medical conditions enrolled in Medicaid. Children's Hospital Association partners with 10 of the nation's leading children's hospitals on the CARE program, which encompasses more than 8,000 patients, as well as their caregivers and health care payers.

Here, we check in with one of CARE's participating institutions, Children's National System in Washington, D.C.

As vice president for the Goldberg Center for Community Pediatric Health—where Children's National Health System provides primary care services for many of the most disadvantaged children in the nation's capital—Mark Weissman, M.D., has seen the CARE Award transform the day-to-day landscape of the hospital's Complex Care Program.

"The CARE Award helped us focus beyond just check-listing the care coordination tasks—it helps us focus on the goals and wishes of our patients' families," says Weissman. "It has changed the way we do business."

An evolving program

The team at Children's National made strides around the CARE Award based on the solid foundation of its Complex Care Program. This unit was established in 2002 as a consultative program with a single full-time pediatrician and a limited staff. To address the growing needs of the Complex Care Program, Children's National integrated it into its largest hospital-based primary care practice in 2011. There, it became the medical home for children with complex medical conditions throughout the Washington, D.C. area, sharing the practice's large staff of faculty providers, resources and expertise.

Today, the Complex Care Program is an established service line and medical home to more than 2,000 medically complex patients, including nearly 700 CARE Award participants. The focus is on complete, coordinated care across each patient's care continuum. This evolving service line includes

  • HELP: a hospitalist consultative service that bridges a patient's inpatient and outpatient care
  • POCC: pre-operative care clinic and care team prepares patient families for procedures and surgeries by outlining admissions and post-operative care plans to eliminate surprises
  • PANDA: Children's National's comprehensive palliative care program

Parents helping parents

One of Children's National's success stories is its Parent Navigator Program. "We love this program, and we love our parent navigators," says Weissman. "They are really part of the fabric of our team."

Established in 2009, the Parent Navigator Program employs the knowledge and experience of parents with special needs children to aid patient families who may be new to the process. Their services range from assistance in locating resources, to educational and informational guidance and emotional support. Children's National currently has eight parent navigators on staff and has integrated them into their primary- and complex-care sites. Additionally, the parent navigators are represented at all management and redesign meetings—giving patient families "an active voice at the table," according to Weissman.

Moving forward

Weissman acknowledges there's still plenty of work to do to align the vision of family-centered care with systems that historically have been hospital-centric. Two key challenges include:

  • Bridging the "significant" gaps in the clinical, case management and financial data system
  • Identifying and addressing social determinants of health

But Weissman says participation in the CARE Award has helped Children's National get closer to those goals. "Partnering with nine other hospitals, we've been able to identify some best practices elsewhere, as well as identify some of our own local challenges," Weissman says.

About CARE

In partnership with 10 of the nation's leading children's hospitals, the Children's Hospital Association received a three-year, $23 million Health Care Innovation Award from the Center for Medicare and Medicaid Innovation. Of the roughly 3 million children with medical complexities nationwide, two-thirds are covered by Medicaid. These 2 million children represent nearly 40 percent of costs. They are clinically fragile and have intense medical and care coordination needs that are not always met by existing care delivery and payment models.

Read other CARE hospital case studies.

Send questions or comments to magazine@childrenshospitals.org.

This publication was made possible by Grant Number 1C1CMS331335 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. Pub: 3217, Approved 9/29/2017