NICA finally can fulfill state’s promise to brain-damaged kids. After 33 years, don’t blow it again | Opinion

To better understand why old-school, shoe-leather reporting matters, consider Thursday’s inaugural meeting of the new and improved board of directors of the Florida Birth Related Neurological Injury Compensation Association — NICA.

Gone were the big shots making big money in the healthcare and financial-service industries. On her way out was longtime executive director Kenney Shipley, an insurance adjuster from Central Casting who kept her bosses happy these past two decades by nickel-and-diming families struggling to keep children alive from one hour to the next — even as NICA’s assets bloated to well over a billion dollars.

In their places sat Jim DeBeaugrine, a former director of the Agency for Persons with Disabilities, and others who have real-world experience caring for profoundly disabled and medically fragile children and adults.

This new and promising paradigm shift is the Legislature’s atonement for myriad sins described last spring in “Birth & Betrayal,” a searing collection of stories presented by a Miami Herald/ProPublica partnership, written by journalists who know Florida well.

Carol Marbin Miller, Daniel Chang and Emily Michot brought attention and respect to long-ignored families with cherished children who cannot survive without round-the-clock care. The Herald team spent hundreds of heart-wrenching hours in the homes of NICA families, and pored over thousands of pages of documents. What emerged was a picture so ugly that that the Legislature did not even try to blow it off with the usual pastiche of platitudes and empty promises.

NICA’s midwives and early supporters include veterans of #TheProcess, such as John Thrasher, who recently left the Florida State University presidency to return to his first love, making gobs of money in the influence-peddling industry — which practitioners prefer to call lobbying. But for “Birth & Betrayal,” the Legislature would still be ignoring the unpleasant truth that NICA was never about providing a decent quality of life for the survivors of a traumatic birth-related brain injury.

Rather, it arrived in 1988 as a healthy, rosy-cheeked bouncing baby of craven, protectionist legislation designed to insulate obstetricians and hospitals from having to answer for a botched delivery. It’s been run from Day One by people such as Shipley, who has said, in writing, that NICA is “not here or funded to promote the best interest of the children.”

The sweeping NICA reform package signed into law by Gov. DeSantis in June delivered new metrics and badly needed financial assistance to families who have been starved of too many necessities in too many cases for far too long. It’s a great start, but the NICA families who offered public comment to the new Board are not yet ready to declare “Mission Accomplished.”

Thursday’s meeting was yet another dreary example of NICA’s tradition of utter contempt for the limited, precious and uncompensated time of the family members whose lives have been upended by tragedies that forced them in to the program. The meeting — held, for some reason, on Yom Kippur, the holiest day on the Jewish calendar — started more than half an hour late as Team Shipley scrambled to make the advertised Zoom link work.

Next, the cyber-audience was subjected to a NICA lawyer reading a lengthy presentation on the state’s open-government laws, sprinkled with references to his firm’s successful effort to keep documents out of the Herald’s hands. The Herald appealed the ruling to the “court” of Chief Financial Officer Jimmy Patronis, who, to his immense credit, had little interest in covering up for the Shipley administration.

The audience was also forced to endure the 33-1/3 long-play stylings of a high-profile lawyer specializing in ethics. Later, the public was ushered into the Zoom waiting room while the Board met in an extended secret session with — you guessed it! — lawyers, all hired during the Shipley decades, all dressed expensively, none likely working pro bono.

Scrolling through the Zoom tiles, you can see the faces of parents and caregivers signed up to tell their needs and concerns to the new regime. Some were accompanied by their catastrophically injured children. All of them have given up their dreams and personal ambitions to provide constant care to children who would prove an impossible challenge even to highly trained medical professionals.

When finally permitted to speak, they were admonished to confine their remarks to three minutes — and don’t make any comments that might hurt Cruella de Shipley’s feelings.

To be fair, DeBeaugrine was plainly under the weather and probably should have been home in bed. He is well-respected, and his commitment to a “cultural change” at NICA should be taken, for now, at face value.

It begins with an immediate, top-to-bottom housecleaning. Shipley’s job shouldn’t be hard to fill. It pays $176,000, and all you have to do is keep the promise of decent healthcare made by the Legislature that foisted NICA upon Florida all those years ago.

Florence Snyder is a Tallahassee-based attorney and writer.