The NICA program was intended to reduce doctors’ malpractice bills and provide a dignified existence and financial cushion for families crushed by the delivery of an infant with devastating brain damage. But some parents report a program that’s both indifferent to their fears and hostile to their needs.

This article was produced for ProPublica’s Local Reporting Network in partnership with the Miami Herald. Sign up for Dispatches to get stories like this one as soon as they are published.

Case managers at Florida’s $1.5 billion compensation program for catastrophically brain-damaged children didn’t consult specialists to determine whether medications, therapy, medical supplies and surgical procedures were “medically necessary” to the health of children in the plan.

They relied on Google instead.

That was one of the findings of a state audit released this week of the Florida Birth-Related Neurological Injury Compensation Association, or NICA. The audit was ordered after the Miami Herald and ProPublica detailed how NICA has amassed nearly $1.5 billion in assets while sometimes arbitrarily denying or slow-walking care to severely brain-damaged children.

The report, from the Office of Insurance Regulation, which oversees the industry for the Florida Cabinet, also found that NICA arbitrarily decides who may be compensated for care — and how much. Administrators developed no system for resolving disputes with angry parents, discouraged parents from appealing denials to an administrative court, and didn’t maintain a system for storing and tracking denials or complaints, the audit said.

“As a father of two, some of these findings boggle my mind and raise basic questions, such as why is a program of this size doing record-keeping with CD-ROMs?” the state’s chief financial officer, Jimmy Patronis, wrote in a letter to NICA’s board chairman. “Why are denials not documented? Plus, is there any process for figuring out whether a procedure, or a piece of equipment, is medically necessary or not?”

“Too often, government can operate like a heartless bureaucracy,” wrote Patronis, who requested the audit after the first story by the Herald and ProPublica, “and we cannot allow NICA to function with indifference. These families deserve nothing less than Florida’s full compassion and support.”

The report confirms the findings of the series, which NICA in April said failed “to provide a completely accurate portrayal.”

As a whole, the audit describes in mostly clinical terms a closed, callous, capricious system that left the parents of sometimes profoundly injured children with no recourse or options when their requests for help were rebuffed.

NICA administrators placed “barriers, burdens and time restrictions” on reimbursement that aren’t in state law, the report said.

For example, parents can override the need for prior authorization when seeking emergency medical care. But NICA told auditors that “it must first be demonstrated that a participant family member ‘benefited from’ or noticeably ‘progressed’ as a result” of such treatment to be reimbursed — a condition state statute doesn’t require.

And even if a child in the program was determined to be eligible for a treatment or therapy, family members sometimes were required to “contact NICA before committing to the purchase,” because failing to do so might “jeopardize the amount of reimbursement,” the audit said.

NICA’s power to arbitrarily approve or deny care was sometimes spelled out explicitly in guidelines. The program’s benefits handbook says that when a family requests a benefit outside of the child’s separate insurance plan, or outside Florida, “NICA alone determines, in advance, whether it will elect to pay for those benefits, even if the treatment, evaluation or surgery is medically necessary,” the audit said.

One of the most curious findings concerned NICA’s method for determining whether requested care was medically necessary and therefore eligible for reimbursement. If any such system existed at all, it involved consulting the internet, not qualified medical professionals.

“NICA stated the case managers and the case manager supervisor often use Google to research and determine medical necessity,” the report said.

When medical necessity is still in dispute, the report said, judgment ultimately rests with “the executive director, who makes determinations regarding medical necessity regardless of the fact that she has no medical training or credentials.”

Jamie Acebo of Pembroke Pines, whose daughter Jasmine spent 27 years in the NICA program, said NICA’s administrator referred her to websites to justify spending decisions — at one point directing her to a company selling air mattresses that were inferior to the one her doctor had prescribed.

“She would send me pictures from Google.” A previous mattress — necessary to prevent Jasmine from developing dangerous pressure sores — “didn’t even get to a year,” said Acebo, whose story was detailed in the Herald and ProPublica series.

The Legislature created NICA in 1988 to satisfy the demands of obstetricians, who insisted their medical malpractice premiums were too burdensome. The statute forbids the parents of certain brain-damaged infants from suing their doctor or hospital. In exchange, the law promises a lifetime of “medically necessary” and “reasonable” care.

Days after the Herald and ProPublica series published, the Legislature unanimously passed a sweeping reform of the 33-year-old program. It promised $150,000 in immediate cash assistance to every NICA family, up to $10,000 in annual mental health coverage, and $100,000 for handicapped-accessible home renovations for each family currently enrolled. The law also set aside $40,000 in additional death benefits for parents whose children died, ending their enrollment in NICA, retroactive to the program’s inception.

The legislation directly addressed the concerns of lawmakers, and Patronis, that NICA appeared to view parents as an inconvenience to its main mission of protecting doctors and insurers: For the first time in the program’s history, Florida law explicitly requires that the program be administered “in a manner that promotes and protects the health and best interest of children with birth-related neurological injuries.”

Gov. Ron DeSantis signed the legislation into law in June.

One version of the bill required NICA to hire an ombudsman to advocate for families unhappy with their treatment, but the measure was removed in the lawmaking session’s waning days as a handful of lobbyists for the program and the insurance industry sought to water down the law’s scope.

The Office of Insurance Regulation audit explicitly recommends that NICA appoint such an advocate.

In the weeks following the legislation’s passage, all five members of NICA’s board of directors, which had been controlled by doctors, hospital administrators and insurance industry representatives, resigned. They were replaced with a seven-member board that, as the new law requires, includes the parent of a NICA child and an advocate for people with disabilities.

The program’s director, Kenney Shipley, abruptly resigned on Sept. 15, the day before NICA’s newly appointed board met for the first time. “I feel grateful and honored to have been able to serve the very special families that I have worked with over the years,” Shipley wrote at the time.

In an Oct. 18 letter to the board’s new chair, Jim DeBeaugrine, accompanying the audit, Patronis said the Herald’s “stories of parents, and their children, going through challenges in dealing with NICA were clearly symptomatic of a flawed program. That’s why we needed [the Office of Insurance Regulation] to take a look at the nuts-and-bolts of how NICA operates to determine where shortcomings existed.”

The results, he wrote, “reaffirm” complaints from current and former parents in the program — some of whom came forward for the first time recently in the wake of the series, and the legislative changes it wrought.

He added: “These are very basic elements of running a program of this type, and NICA was unable to provide auditors with acceptable answers.”

Patronis called the audit, and its 15 separate recommendations, a “roadmap” for redirecting the program to “the right course.”

Auditors concluded that the recommended changes were needed if NICA is to be in compliance with the new mandate to manage the program in a manner that promotes the health and best interests of children accepted into the plan.

DeBeaugrine — who formerly served as director of the state Agency for Persons with Disabilities, and who represents children with special needs on the board — has been asked to oversee the program’s reinvention. In a written response to auditors, he wrote, “NICA accepts the findings therein and does not request or recommend changes.” In an interview with the Herald, he also called the audit a blueprint for reform.

“We are taking that report and its recommendations seriously,” he said, adding the audit will help incoming board members “navigate and implement” the calls from parents and lawmakers to transform the program.

Instead of devoting much additional time to decrying how the program lost its way, DeBeaugrine said, board members should heed the audit’s recommendations for fixing the problems. “This gives us some good ideas for how to move forward,” he said. “It points out some areas of improvement. We will be referring to it quite a bit.”

At the next NICA board meeting, DeBeaugrine said, he will recommend the board appoint an interim director to carry out the changes.

“She tendered her resignation,” he said of Shipley. “We are going in a different direction. Taking these reports, I think it just makes better sense to start that process once we get different management in place.”

“I feel like we have a blank slate,” he added.

During the course of the audit, administrators had difficulty explaining many of NICA’s practices.

For instance, the report said administrators were unable to document how many families were eligible for the $150,000 added benefit called for by lawmakers: The program said 215 families were entitled to the supplement, but detailed payments to the parents of 221 covered children — not 215.

The program hadn’t kept track of the families of deceased children, either, the report said, complicating the task of providing them the $40,000 in additional death benefits under the new law. The previous benefit was $10,000. The legislation raises the death benefit from $10,000 to $50,000 for all new petitions.

The provision applies to 216 families of deceased children, the audit said. But NICA can’t find 50 of them. Another child appears to have been in foster care in Texas when he or she died, and attempts to identify and contact the child’s parents or guardians have been unsuccessful.

The audit called NICA’s system for storing and tracking claims “incomplete and unreliable.” Records sometimes lacked documentation, or contained erroneous labels and inaccurate coding, making it impossible to “ascertain the timely and accurate payment of claims,” the report said.

In addition to outright denying claims, administrators sometimes agreed to pay only a portion of an expense, the report said. The program “was unable to provide any documentation to support the imposition of these monetary limits” or showing that they complied with the law governing the program.

Auditors found “boxes of paper records” scattered throughout NICA’s Tallahassee office. The program also kept records on compact disks, which “can erode over time.”

“The auditors noted a significant number of documents were missing from the claims system and, in certain cases, were uploaded after NICA received an inquiry from the auditors,” the report said.

The report said NICA spent hundreds of thousands of dollars on vendors without requiring a contract.

Some of the lapses identified by the auditors reflected failures to comply with the program’s own plan of operation, including: the failure to develop a system for resolving disputes with parents, the failure to maintain an “up-to-date” claims procedures manual, and the lack of a schedule to ensure claims are processed and reimbursed in timely fashion.

When auditors requested a copy of NICA’s claims manual, for example, they were given a document that is eight years old. Administrators told auditors the 2013 manual “was outdated and no longer in use,” the audit said, but noted the program never bothered to update it.

NICA’s poor communication with families in the program was a central theme in the report, which quoted the mother of a now-23-year-old woman — whose story is reported in the Herald series — beseeching administrators to “help families” and not “put up brick walls.”

“Change needs to happen in the NICA culture,” the report quoted Patricia Parrish saying at an April 6, 2017, board meeting. The audit said NICA leadership “failed to record if or how” such complaints were resolved.

After reading the audit, Parrish — whose daughter Delaina graduated from the University of Florida, aided by a device that converts her eye movements into computer-generated words — said she was most struck by the lack of accountability at NICA — over the course of three decades, the administrations of multiple governors and financial regulators and both political parties. “The pain and suffering among parents was caused, in part, because there was no oversight,” she said.

“We have been let down,” she said. “They let every one of us down by not managing the oversight of this organization.”

The device that gave voice to her daughter was provided not by NICA but by the manufacturer.

For years, administrators visited the homes of families who were being enrolled in the program, and occasionally after that when it was necessary. But the visits ceased in 2017, the report said, and “no similar replacement outreach efforts to support participant families have been instituted since 2017.”

Acebo — who recalls being offered the chance to institutionalize Jasmine during one such home visit, an offer she rejected — said Thursday the audit was a vindication of her decision to tell her story, painful as it was. Acebo said she never understood why NICA was hoarding hundreds of thousands of dollars while families like hers suffered. “These children are not going to get to be 50 years old. They’re not. Why not give them the best quality of life you can give them while they’re here?”

“I felt like finally someone listened to us,” she said. “Finally someone did something about it.”

She added: “Now they are going to have to be held accountable. That, to me, is the best thing in the world.”