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.

On the eve of what was expected to be a contentious board of directors meeting, the head of Florida’s compensation program for brain-damaged children abruptly resigned.

Kenney Shipley, who has overseen the Birth-Related Neurological Injury Compensation Association, or NICA, for nearly two decades, announced her resignation in a letter Wednesday. It takes effect Jan. 4, 2022, though Shipley intends to claim accrued leave time after an interim director is appointed.

“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 in her letter ahead of a Thursday meeting. “Many have been my heroes and taught me what real strength and character are.”

Shipley, a former insurance adjuster, had been facing intense criticism since April when the Miami Herald, in partnership with the investigative newsroom ProPublica, began publishing a series of stories about the program, created by the Florida Legislature in 1988 to immunize obstetricians from the financial consequences of catastrophic births.

The investigation by the news organizations detailed how NICA had amassed nearly $1.5 billion in assets while administrators often refused requests large and small — for medication, medical equipment, wheelchairs, therapy and in-home nursing for children with breathing tubes. The series showed administrators spent thousands of dollars in legal fees to avoid spending hundreds for care.

Under the NICA statute — one of only two such laws in the nation — parents lost the right to sue their doctor or hospital under certain circumstances when their child was born with severe brain damage from oxygen deprivation or spinal injury. In exchange for that loss, parents were promised “medically necessary” and “reasonable” medical care for the life of their children.

After the series published, Florida lawmakers passed sweeping legislation to reform the program, delivering new benefits and protections to the more than 200 Florida families with children covered by NICA, including mental health services, representation on the board of directors and retroactive compensation of $150,000 for parents whose children are still alive and in the program. Gov. Ron DeSantis signed the legislation into law in June.

Alex Sink, Florida’s chief financial officer from 2006 to 2010, said she is encouraged by the changes at NICA. Sink had criticized the program as a “scam” and accused NICA’s leaders of having misplaced priorities that emphasized the financial growth of the program over meeting the needs of families.

“It gives me hope that maybe these people who are supposed to represent us in Tallahassee occasionally have a conscience,” Sink said. “It’s a long time coming.”

Aside from the new law, NICA must contend with an angry Legislature and intense oversight from Florida’s Chief Financial Officer Jimmy Patronis, whose office is performing a “market conduct operational audit” to determine “the extent to which NICA’s claim-handling practices comply with [the program’s] statutory mandate.”

Patronis also appointed his consumer advocate, Tasha Carter, to represent families in disputes with NICA administrators over care and services.

After lawmakers appeared to reproach Shipley by requiring the program to operate “in a manner that promotes and protects the health and best interests of children,” Shipley continued to anger parents and regulators.

Though the Legislature had imposed no conditions on NICA families receiving a $150,000 cash supplement, Shipley at first insisted that parents sign a “perjury statement” — an attestation that the signer was not committing fraud — before they could claim the benefit. The statements, which invoked the specter of criminal prosecution, infuriated many parents.

In a June 21 email obtained by the Herald, Carter told Shipley that “to require the parents and legal guardians to sign a Perjury Statement in order to receive the award creates stipulations that are not in law. Would NICA withhold the disbursement of the parental award if a parent or legal guardian refused to sign the Perjury Statement?”

Carter asked Shipley to “immediately discontinue the requirement” and to notify families that the perjury statement was no longer required.

Shipley did not publicly address the concerns from Carter. Before the change in the law, NICA alleged that it required families to sign such statements “after unfortunate instances of some claimants falsifying documents and misrepresenting payments when seeking reimbursement,” but it would not provide specifics when asked by Herald reporters.

Shipley’s departure occurs at a crucial moment: The program’s governing board of directors was expanded from five to seven at the same time the members of the previous board, dominated by representatives of the health care and insurance industries, quit amid a new provision in the law setting term limits.

The board’s interim chairman, Jim DeBeaugrine, said Wednesday that the new board is prepared for the work ahead, which includes recruiting an executive director, creating a new agency culture that emphasizes service to parents and implementing the mandates of an entirely new governing statute.

“It’s a very important job,” DeBeaugrine said of the next leader. “It will be the executive director of an organization with $1.5 billion in investments. More important than that are the lives we are supporting. The families. We want to get it right.”

One of the families the new board will be supporting includes the mother and two sisters of Justin Nguyen, a 24-year-old Jacksonville man who was left with profound brain damage at birth.

“My brother has been in the NICA program for 24 years — probably as one of NICA’s oldest participants,” said Justin’s older sister, Jennifer Pham, 31, who has helped manage Justin’s care since his childhood. Pham said Shipley was “negligent in fulfilling her duties and obligations while leading and managing NICA.”

“The future looks brighter for the next day,” Pham said, “but we still have a long way to go to correct the program.

“I hope that the next director is more involved with and passionate about NICA families and the needs of their loved ones. And I also hope the events that unraveled concerning NICA over these past months serve as a wake-up call to the Florida government and watchdogs. How much do families have to suffer before they’re heard?”

NICA parent Ashley Huffman of Jupiter, whose 7-year-old son, Malcolm, is in the program, also was pleased to learn it would soon be under new management.

“We need someone fresh who actually cares about the quality of our children’s lives,” Huffman said. “Too many mistakes and too many families have suffered needlessly under her watch.”