Reimagining Care for Medically Complex Children

PPEC programs like Spark Pediatrics give healthcare providers a resource to manage and coordinate care for children with complex care needs. They also give parents a chance to relax a bit, and enable these children to be kids.

Health systems and hospitals play an important role in coordinating care for small children with complex medical needs, who often transfer out of the NICU and into a chaotic and uncertain world.

A model of care called PPEC (Prescribed Pediatric Extended Care) aims to make that process easier for providers, patients and their families.

A concept that’s been around for roughly 40 years, PPEC centers are gaining momentum as the number of “medically complex” children surpasses 3 million in the U.S., straining the resources of both healthcare providers and families. The center-based model, likened to a day care, aims to give these children the care they need alongside the childhood they’re often missing out on.

“We’re helping kids [with complex medical conditions] get access to skilled nursing care,” says Jeffrey Soffen, CEO of Spark Pediatrics, a Florida-based PPEC provider that is working with more than a dozen health systems across three states. “We promote socialization. We promote respite for the families so that they can either have time to themselves or time to go to work or whatever it might be. I'd say right now that's really important.”

There are roughly 180 PPECs in the U.S., located in the 15 states whose Medicaid programs permit the centers (Medicaid requires a prescription for care from the child’s primary pediatrician). Several states, including Missouri, are debating amending their Medicaid program to permit PPECs, but the path forward is slow and uncertain, especially considering the current political climate.

Earlier this year Spark Pediatrics raised $15 million in new investments, with funding from Pittsburgh’s UPMC Enterprises and the Houston’s Memorial Hermann Health System. Soffen says the funds will enable Spark to establish new partnerships in Pennsylvania and Texas, the next step in a plan to expand across the country.

“Spark is creating a new model of care delivery for children with medical complexities that is aimed at improving quality of care and the family experience for this often-overlooked population,” Mary Beth Navarra-Sirio, Vice President of Market Development at UPMC Enterprises, the innovation, commercialization, and venture capital arm of UPMC, said in a January 2025 press release on the funding round. “This aligns well with our focus on creating innovations that impact the lives of patients in meaningful, lasting ways.”

Soffen says medically complex children often begin their lives in the hospital NICU, move through other departments in the hospital, then need care from a wide range of doctors, nurses and specialists when they go home—tasks that often fall on stressed parents. On top of that, there are often delays, some as long as a year, in accessing specialists.

"We Should Be Locking Arms"

That’s where care coordination becomes a necessity.

“Our kids are born in their NICU, they're going back to their hospitals, they're seeing their pediatricians,” Soffen says. “It feels like we should be locking arms, right?”

Spark uses a patient-centered medical home strategy at about half the cost of in-home care, he says. Through a care team that collaborates with specialists, the center offers up to 12 hours of care seven days a week, with a patient-to-staff ratio of 1:3.

“My biggest thing that I want to do is make these kids’ lives easier,” Soffen says. “If you think about a child that we serve, they might have 12-13 specialists. They might have an appointment every week with a different doctor. [Parents] also have to coordinate therapies. So if you have a feeding tube, you've got to be working on swallowing in order [to make] progress and eventually get this feeding tube out.”

“We need to do as many of those things in our center as possible, but we also need to understand who we are and who we are not,” he adds. That means the center focuses on a small care team and coordinates specialist visits, taking the pressure off of parents who would otherwise be scheduling specialist visits at home or transporting their children to doctor’s offices and clinics.

For that reason, Spark Pediatrics—like most PPEC providers—needs to be located near large population centers.

“The more kids that we serve in a center, the more we can do for them, and that's the really powerful thing,” Soffen says. “So if I have 30 kids in my center instead of 10, my ability to attract providers to do virtual visits or come into the center to do a wellness check is a totally different scenario. If they can see 20 kids instead of five kids, that makes it worthwhile.”

That’s why Spark Pediatrics started in Florida and is targeting heavily populated states like Texas and Pennsylvania. Medicaid support is crucial, Soffen says, as almost all of their patients are on Medicaid, and Spark is working with legislators in states like Missouri to expand the number of states they can work in. They’re also talking to private payers about the value of the program.

The UPMC partnership, meanwhile, has an added benefit of an associated health plan, offering opportunities for innovative care arrangements like an ACO.

“An ACO is a is a way for providers to come together to produce better outcomes for their patients and to do it in a cost-effective manner than incentivizes them to do that,” Soffen says. “Why shouldn't we be a part of that if we're able to help them achieve that goal?”

"Why Shouldn't They Have That Chance to Just Be a Kid?"

Soffen says they’ve had good conversations with pediatric hospitals (their partners include Nemours, Joe DiMaggio Children’s Hospital, Orlando Health’s Arnold Palmer Hospital, Palm Beach Children’s Hospital, Baptist Health Jacksonville’s Wolfson Children’s Hospital and Texas Children’s Hospital). But the wider strategy is to partner with any health system that treats medically complex children.

“A big part of our job is to educate, in particular, the hospitals, the discharge coordinators, the care managers, the case managers, the pediatricians, the specialists, the pediatric specialists,” he says. “Those are who our kids are going to every day and they're the ones that put their trust in those institutions to recommend what is best for them.”

The biggest barrier, of course, is funding, and the ongoing chaos in Washington DC over Medicare and Medicaid sustainability casts a shadow over the growth of any PPEC.

That’s why Soffen wants healthcare providers and lawmakers to see not only the financial and clinical value to these centers, but what these facilities can offer to children and their parents.

“You want these kids to have the childhood that you dream about, where they come home from friend's houses or birthday parties or doing arts and crafts, and you put [their artwork] on your window and you're so proud of them,” he says. “Why shouldn’t they have that chance to just be a kid.”