Politics & Government

Facing fierce criticism, head of Florida’s troubled program to aid brain-damaged kids quits

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Birth and Betrayal

A Florida program designed to protect OB-GYNS from huge malpractice bills deprives families of their right to sue in the event of a birth gone terribly wrong. It provides a one-time payment and promises to cover lifetime medical expenses. Some hard-pressed parents report a bureaucratic nightmare that’s anything but supportive.

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On the eve of what was expected to be a contentious board of directors meeting, the head of Florida’s compensation program for children born with catastrophic brain injuries has 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, who was paid $176,900, wrote in her letter. “Many have been my heroes and taught me what real strength and character are.”

“I plan to cooperate and be available to assist the organization in any way that would be beneficial,” Shipley added.

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.

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.

The investigation by the news organizations, called Birth & Betrayal, 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 in legal fees to avoid spending hundreds for care.

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.

Alex Sink
Alex Sink

“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. … It really is a new day for NICA.”

Sink added: “This new board has the opportunity to bring in a CEO who does the job. The job is to put the needs of these families first.”

Shipley Resignation Letter by Casey Frank on Scribd

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 healthcare and insurance industries, quit amid a new provision setting term limits. The reconstituted board, which for the first time includes a NICA parent and an advocate for children, holds its inaugural meeting Thursday at 1 p.m.

Aside from the new law, NICA also must contend with an angry Legislature and intense oversight from Florida’s chief financial officer, Jimmy Patronis, whose office is conducting 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.

But even after lawmakers appeared to reproach Shipley by including a statutory provision requiring the program to operate “in a manner that promotes and protects the health and best interests of children,” Shipley continued to anger both 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, required by Shipley for all invoices, that the signer was not committing fraud — before they could claim the benefit. The statements, which invoked the specter of criminal prosecution, infuriated some 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.

Jim DeBeaugrine
Jim DeBeaugrine

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

“We have our work cut out for us,” he said.

“Everybody who has accepted an appointment to this board understood that going in,” said DeBeaugrine, a former director of the Florida Agency for Persons with Disabilities who also has been a longtime caregiver for a disabled family member. “I’m confident we are going to be up to the task ahead.”

“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. Too many mistakes and too many families have suffered needlessly under her watch.”

This story was originally published September 15, 2021 at 8:42 PM with the headline "Facing fierce criticism, head of Florida’s troubled program to aid brain-damaged kids quits."

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Carol Marbin Miller
Miami Herald
Carol Marbin Miller is the Herald’s deputy investigations editor. Carol grew up in North Miami Beach, and holds degrees from Florida State University and the Columbia University Graduate School of Journalism. She has written about children, elders and people with disabilities for 25 years. Stories written by Carol have influenced public policy and spurred legislative action, including the passage of laws that reformed the state’s involuntary commitment, child welfare and juvenile justice systems.
Daniel Chang
Miami Herald
Daniel Chang covers health care for the Miami Herald, where he works to untangle the often irrational world of health insurance, hospitals and health policy for readers.
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Birth and Betrayal

A Florida program designed to protect OB-GYNS from huge malpractice bills deprives families of their right to sue in the event of a birth gone terribly wrong. It provides a one-time payment and promises to cover lifetime medical expenses. Some hard-pressed parents report a bureaucratic nightmare that’s anything but supportive.