Care coordinator Gail Benincasa, RN, helps Jonathan’s family better manage his specialist and primary care visits.
When 8-year-old Jonathan Hohrath doesn’t feel well, is running low on medicine or needs to see a specialist, his mother, Marie, knows what to do: She calls Gail Benincasa, RN, a care coordinator at the Nicholas and Athena Karabots Pediatric Care Center. Because Jonathan’s medical needs are complex, those calls can be as frequent as once a week.
“She’s super great, just awesome,” Marie says of Benincasa. “She’s been very helpful in keeping Jonathan healthy.”
Benincasa plays a special role for the Hohrath family. Her aim is to proactively manage Jonathan’s many medical issues related to Coffin-Siris syndrome, a rare genetic disorder, to help him live life to the fullest and stay out of the Emergency Department and the Hospital.
His issues include developmental delays, feeding problems requiring supplemental nighttime feeds, sleep apnea, seizures, autism spectrum disorder and asthma. He sees specialists in Neurology, Ear, Nose and Throat, Pulmonology, Allergy/Immunology, Urology, and the Pediatric Feeding and Swallowing Center.
Touching all the bases
Keeping his appointments and medications straight is enough to make anyone’s head spin. Enter Benincasa, who coordinates all his specialist appointments; makes sure Jonathan regularly sees his primary care provider, Amanda Sullivan, MSN, CRNP; checks with Home Care services for his overnight care; and keeps everyone on his large care team up to date on changes in his care plan. If Jonathan’s insurance company requires extra documentation to approve some aspect of his care, Benincasa is the one who calls or writes a letter of medical necessity.
“I know what I do makes a big difference for Jonathan and his mother,” she says. “It’s gratifying to see everything come together to keep him on track.”
Benincasa is one of three care coordinators based at Karabots. Seven other CHOP Care Network primary care offices also have care coordinators, and they work with a total of 690 children with complex medical needs. They are supported by a Coordinating All Resources Effectively (CARE) Award grant from the Center for Medicare and Medicaid Innovation. Complex patients make up 6 percent of the children who are insured by Medicaid but account for 40 percent of the cost. Enhanced care coordination can improve outcomes for the child and reduce costs, too.
“To invite families to participate in the CARE Award program, we look at the child’s medical complexity, diagnosis and the ability of the family to navigate the health system,” says Kathleen M. Ward, MSN, CPNP, co-clinical champion for the CARE Award. “Each child receives a longitudinal care plan that strives toward the optimal level of function — in their own environment, physically, emotionally and within the family.”
The CARE Award also supports a regional care coordinator, Tara Holahan, RN, a CHOP nurse who steps in when a child in the program is admitted to CHOP, serving as the liaison between the inpatient and outpatient medical teams, working to keep the length of stay as short as possible, and ensuring a smooth transition from Hospital to home.
For example, if the child was discharged with instructions to see a specialist for follow-up a week later or begin physical therapy in two weeks, Holahan would facilitate those appointments. She also makes sure parents understand what medications their child needs and how to administer them.
The CARE Award program includes CHOP’s Compass Care program, which targets children who are even more medically complex and fragile, often requiring frequent hospitalizations.
To confirm the CARE Award program meets its goals and learn how to make it better, CHOP tracks all children enrolled to study the impact that enhanced care coordination has on their healthcare utilization, outcomes and spending.
It certainly receives two thumbs up from Marie and Jonathan. “Gail helps us with everything,” says Marie. “We owe a lot to her.”