Capable Kids Program Provides Coordinated Complex Neurological and Medical Care

In January 2016, Penn State Children’s Hospital launched ‘Capable Kids,’ a care coordination program involving more than 200 patients. The program aims to better manage the complex medical needs of children with serious neurological diagnoses and reduce the burden on families. William Trescher, MD, division chief, pediatric neurology and president of the Child Neurology Foundation, says, “This idea stemmed from a Penn State Milton S. Hershey Medical Center retreat in 2014 when a number of clinicians from multiple specialties came together to explore ways to provide improved care for our patients and families.” Physicians, including those from pediatric gastroenterology, pulmonology, orthopedics and neurology, participate in the program, working together to address the needs of kids with very debilitating illnesses. Capable Kids is uniquely tailored to the needs and challenges of families in the surrounding community, which is largely rural or semi-rural.

The three-pronged program comprises medical management and nursing case management, in addition to community outreach and education, all designed to empower families and connect them with care teams for greater efficiency and reduced burden. Capable Kids employs specially-trained registered nurses who serve as the main contact for parents. Paula Cameron, RN, a Capable Kids care coordinator, explains, “Families often need help identifying services for their child near their home or provided in their home. We also work to coordinate office visits on a given day, so parents can better manage time missed from work or caring for their other children.” The coordinators have found outside programs that Penn State Children’s Hospital works with synergistically, such as an adaptive cycling program and durable medical equipment companies, as well as social support groups and home health providers.

Dr. Trescher says, “The next phase in growing Capable Kids is to bring on a primary care pediatrician (specialist pediatrician) to work with the broader specialty team. Most of our patients are regarded as too complex to manage in a primary care setting. A pediatrician is key to managing acute care and post-discharge transitions, as well as liaising with community nursing care providers and the child’s specialist team.” A specialist pediatrician will also play an important role when patients transition to adult care settings, based on the protocol of the Child Neurology Foundation.

Educating families is another crucial aspect of empowering them as care providers, and toward that goal, Capable Kids recently sponsored a seizure recognition workshop. Cameron adds, “Families have given us very positive feedback about the program, grateful to know they can call someone who knows their child, and how to connect them with people and organizations that can help.” Capable Kids is funded, in part, by the Children’s Miracle Network.