Florida hurts distraught parents with brain-injured babies. Lawmakers have two weeks to fix it | Editorial

·7 min read

Most Floridians only find out about an obscure state program called the Birth-Related Neurological Injury Compensation Association, or NICA, in the terrible moment when they learn their newborn has suffered catastrophic brain damage due to oxygen deprivation during delivery.

For Yamile “Jamie” Acebo, that devastating blow came in 1989 when her baby, Jasmine, was born. Acebo didn’t know until a few hours later that the doctor had pierced the placenta that carried blood and oxygen to the baby’s brain. A nurse showed her a photo of her infant in a nest of wires and tubes.

Faced with the crushing emotional and financial prospect of raising a profoundly disabled child, Acebo took the only real route open to her in Florida. She entered the NICA program. It paid her a lump sum of $100,000 for expenses and promised a lifetime of medical care for her daughter. In Florida, if she had tried to sue her doctor, she would have been directed into the program anyway.

But it wasn’t until later that reality sank in. Like hundreds of other parents in Florida, simply by entering the program, Acebo had waived her right to sue the doctor, forever. And NICA, which had promised to pay for “reasonable” and “necessary” lifetime care? Acebo had to hound them into paying for some of basic items, from replacing Jasmine’s special bed that had collapsed (the agency asked if it could be welded back together) to supplying a wheelchair that actually fit her daughter’s growing body. This battle went on for an unthinkable 27 years, until Jasmine died.

“Birth and Betrayal,” a Miami Herald series produced in partnership with the investigative news organization ProPublica, exposes how a Florida program billed as a merciful answer for some of the state’s most vulnerable people frequently put financial interests and protecting doctors ahead of families.

In a two-year investigation, Herald reporters documented how NICA has amassed nearly $1.5 billion in assets but has denied or delayed help for families while shielding doctors from liability. They showed how the program pushes back on many families’ expenses — in one case, even hiring a private investigator — but still pays hundreds of thousands for lawyers to fight requests for benefits.

They revealed that a program to deal with what the Legislature once referred to as “bad baby” births hasn’t increased its initial benefit to families since it began, in 1988. And they detailed how, under NICA, parents can’t even find out exactly what happened to their child during delivery, even if the baby did not survive.

If that litany of awfulness isn’t enough, there’s more. The five-member NICA board includes insurance representatives, doctors and hospitals — but it has never had a NICA parent on it. Then there’s the way NICA processes claims, insisting it is the “payer of last resort” and shifting costs to Medicaid. (That issue is part of a federal lawsuit in Florida, similar to a recently settled case Virginia, the only other state that has a NICA program.)

But the main problem is this: For 33 years, Florida has all but forced the families of catastrophically brain injured children to accept the terms of this program as the way to get financial assistance at probably the worst moment of their lives, while simultaneously stripping them of their rights to sue, all in the name of protecting obstetricians from liability.

This is government gone terribly wrong. It’s cruelty disguised as help. And those who pay the biggest price are the ones who should be most protected: families that are already struggling in a world of hurt.

To be fair, there are some families that are happy with the program. Some say that while NICA may be “nickel-and-diming” them, the program does take care of their children. But it’s clear from the examples in the series that there are far too many families like the Acebos.

That’s why the NICA program needs an immediate, top-to-bottom review, a legislative plan to fix it and a public accounting for those who have been in charge. With only two weeks left in the legislative session, that may be hard for lawmakers — but too bad. These families should not be made to wait until next year.

It was the Legislature that created the program, back in the 1980s, to fix what was believed to be a medical-malpractice crisis in Florida. NICA was designed to hold down soaring insurance premiums for doctors who delivered babies and who could face multimillion-dollar jury verdicts in some cases. Without the program, the reasoning went, obstetricians would exit the state in droves.

But while helping obstetricians — including giving cover to the worst among them — lawmakers inflicted decades of harm and difficulties on the families.

A 2013 bill could have helped, at least a tiny bit. It would have required that NICA inform parents once a year of the benefits available to them. It also proposed adding a NICA parent or guardian to the board overseeing the program.

But it went nowhere, perhaps because NICA executive director Kenney Shipley opposed it. In a revealing comment, she told a lobbyist in an email that, “We are not here or funded to ‘promote the best interest’ of the children.” Shipley either needs new marching orders, or she needs to go, taking her counterproductive callousness with her.

Apparently, this needs to be spelled out: A government program should not help obstetricians at the expense of families of brain-damaged children.

Since publication of the series, officials have started to respond. Chief Financial Officer Jimmy Patronis announced a review of NICA’s books, saying, “Parents shouldn’t be put into a position where they feel pressured into signing their rights away.”

And there’s a bill in the Legislature, CS/SB 1786, sponsored by Broward County Democratic Sen. Lauren Book, along with Zephyrhills Republican Sen. Danny Burgess, that may help. Among provisions under discussion: retroactively increasing the lump sum for parents, creating an ombudsmen, adding a NICA parent to board, requiring a response to expense requests within 20 days and requiring board members to follow a code of ethics.

NICA has responded to the stories, saying the investigation didn’t provide a “completely accurate” picture. NICA said the program, funded through doctor and hospital fees, has at least $1.05 billion in liabilities for future expenses out of its $1.5 billion in assets. It said NICA had worked “tirelessly” to address issues with families while also “fulfilling our obligation as fiscal stewards.”

But that’s the problem. Being a “fiscal steward” shouldn’t take precedence over treating these families and these children with a heart. Rather, these dual missions should be on equal footing.

The law also inflicts one more cruelty on families. It stops them from learning the truth about what happened to their child. Lindsey and James Johnson, whose son, Cooper, died eight days after he was born, went into the NICA program and quickly regretted it. Sixteen months later, James Johnson launched a Change.org petition pushing for more accountability for both obstetricians and NICA.

Another desperate parent, Ruth Jacques, posted leaflets warning prospective patients to stay away from obstetrician Dr. Ricardo Lopez after her son, Reginald, was born with catastrophic brain injury. But she was advised to stop because Lopez could do what she could not: He could sue her. Since then, every year on her son’s birthday and on the anniversary of his death, she takes the one action she is allowed: She files a new complaint with the state Department of Health.

She wants the doctor — who has had other NICA cases — to remember that Reggie lived, and that he died.

But those complaints must be more than reminders stuck in a government file. They must serve as calls to action. If legislators have any compassion at all, they must fix this program now, for the families of Jasmine and Cooper and Reggie and all the others yet to come.

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