Ollie Super has moved in and out of cancer treatment since she was diagnosed with neuroblastoma as a toddler in foster care. Now 8, the second grader is dealing with it again. Her cancer came back late last year.

Ollie’s parents, who adopted her in 2020, tried to sign her up for a clinical trial using CAR T-cell therapy — which genetically reprograms a patient’s white blood cells to help them fight cancer — at UNC Health in Chapel Hill, North Carolina, an hour-and-a-half drive from their home in Eden.

Her mother, Britany Super, described it as Ollie’s “last option.”

But in early March, Super recalled, UNC Health’s financial office told them the bad news: The state’s new insurance for kids in foster care wasn’t going to pay for the treatment.

In December, Ollie became one of hundreds of thousands of kids nationwide enrolled in a special kind of public health insurance for people served by the foster care system. That insurance, known as a specialized managed care plan, is part of Medicaid, the federal-state program that covers health costs for people with low incomes or disabilities.

North Carolina is one of 14 states with such specialized foster care plans, according to the National Academy for State Health Policy. The plans differ by state, but each is meant to expand coverage for children in the foster care system — and for kids who were adopted out of it, such as Ollie and her siblings.

Yet, as in other states that have struggled when adding such plans, North Carolina families have faced hurdles obtaining care. Thousands of doctors whose services were covered under Medicaid were not included in the specialized plan — which is costing the state $3.1 billion over four years — when it rolled out on Dec. 1. That left guardians and parents of kids adopted out of the system scrambling to figure out whether they would have to find new health care providers or new insurance.

In North Carolina, the insurance plan’s stumbles have added another layer of complication around health care issues. The state — like many others — is already grappling with uncertainty over expected Medicaid cuts in the wake of congressional Republicans’ One Big Beautiful Bill Act. A separate Medicaid funding shortfall also prompted a push to cut care providers’ reimbursement rates.

Texas, which established its plan 18 years ago, found in recent years that its foster families also had a hard time finding doctors on the insurance. In Florida, researchers for the state reported as early as 2016 that there was a lack of providers accepting its plan.

Illinois’ plan prompted an investigation by the Centers for Medicare & Medicaid Services over a lack of access to care. Research concluded that California’s plan did not provide children with adequate mental health services. Georgia’s access problems alarmed state officials enough to prompt pending legislation calling for children to be removed from the plan and put back on other Medicaid plans.

But such specialized plans for kids in foster care continue to gain traction. Four states have started their own plans in the past five years, said Karen VanLandeghem, the senior director of children and family health at the National Academy for State Health Policy, and she said it’s likely more will adopt them soon.

Only a handful of states publish numbers showing how these programs are faring, Medicaid policy analysts said. It’s therefore difficult to know why they’ve run into rollout problems or whether they’ve improved access to care. That makes the plans risky, said Andy Schneider, a research professor at Georgetown University’s Center for Children and Families.

“The states that are going in this direction, unless they have data to support it, are experimenting,” Schneider said. “They’re putting all their eggs in one basket, so they need to pay close attention.”

Rough rollout

North Carolina’s specialized insurance plan for foster kids experienced problems the day it rolled out.

The state automatically enrolled Ollie and about 32,000 other people in its specialized plan, called Healthy Blue Care Together. North Carolina officials had said the program would improve health care access for foster children, who often have medically complex needs and move frequently.

But foster families quickly began hearing that their health care providers were not taking the insurance, according to several families who recounted their experiences fighting to get their children’s procedures covered under the plan.

UNC Health, a state-run health system that is one of the largest care providers in North Carolina, with nearly 4,400 physicians, would not sign on to the state’s plan initially, which is why it told Super that Ollie’s CAR T-cell treatment wouldn’t be covered.

After more than two months of limbo for families, UNC Health ultimately reached an agreement in mid-March with Blue Cross Blue Shield of North Carolina, which runs the plan.

But some North Carolina doctors still don’t accept Healthy Blue insurance.

Melanie Bush, interim deputy secretary for North Carolina’s Medicaid program, said her office has been pressing Healthy Blue to expand its network, even though it already has what she called an “adequate” number of providers. North Carolina’s health department and Blue Cross Blue Shield did not answer KFF Health News’ questions about how many providers are covered by the new insurance.

“We welcome qualified providers who want to join,” said Blue Cross Blue Shield of North Carolina spokesperson Sara Lang.

Other problems persisted. As thousands of health care records move over to a statewide database managed by Healthy Blue, children’s doctors are struggling to track their patients’ medical histories, said foster care advocates and pediatricians. Parents reported problems seeing health records, finding themselves locked out of online portals. Others couldn’t access prescriptions. Surgeries got delayed. Appointments were canceled.

“Network management for any plan is an ongoing process,” Lang said.

All this meant added red tape and heartache for the caregivers of children like Ollie with complex medical needs — those the plan was intended to help the most.

Gearing up

Cancer has been part of Ollie’s life since she was 2. She was in the process of getting adopted out of foster care when she began chemotherapy and radiation treatments, then received two stem cell transplants, Super recalled.

Surgeons installed temporary tubes in a vein near her heart and a feeding tube in her abdomen. Her hair fell out as the treatment intensified, and a thin layer of skin peeled off, forcing her new family to wear surgical gowns and gloves when they wanted to be close.

“She doesn’t remember life outside of going to doctors and being in a hospital,” Super said.

Ollie still has a port in her chest ready for whenever she needs intravenous medicine, and her monthly doctor appointments are about to become weekly. During an emergency room visit in mid-March, doctors told Super her daughter’s cancer had spread. Ollie will need more chemotherapy before her body is ready for the more advanced treatment.

But the Supers, thrown into uncertainty for more than two months, still feel some relief. They’re preparing for back-and-forth drives for the CAR T-cell therapy treatments in Chapel Hill. And they’re grateful, even if it means Ollie will spend at least five more weeks in and out of a hospital.

Reliable health insurance will be vital for Ollie, and Healthy Blue leaders said they are talking with doctors, parents, and others to make sure the plan is working. Her procedures carry multimillion-dollar price tags, her mother said, but having her bills seamlessly covered allows the family to focus on Ollie’s treatment.

“The biggest challenges for her will be in the first few months of the study,” said Super, who knows the therapy’s side effects include fever, fatigue, and confusion. “But I’m hoping that after that, the CAR T-cells will do their job and fight the cancer and she can continue to have a playful, active life.”

That means, they hope, the girl could be at home more often with her five siblings and the three family dogs, including Remy, a border collie mix who is Ollie’s favorite.

Super relishes those precious moments for her daughter — “being a kid and doing kid things.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.