Florida families hard hit by their children’s birth injuries are promised more help
In the eight months since Florida’s embattled compensation program for children born with brain injuries was the subject of an exposé, lawmakers approved a comprehensive overhaul of the program, the top administrator resigned, and new leaders have announced broad reforms aimed at improving the lives of frail, severely disabled children.
On Thursday, the Birth Related Neurological Injury Compensation Association’s chairman gave parents the message some of them waited decades to hear: “You have been heard.”
“Our actions are going to be proof of that,” said Board Chairman Jim DeBeaugrine, looking directly at his computer’s camera during a meeting held virtually. “Words alone are not sufficient to address these issues.”
NICA’s transformation then continued with the announcement of the planned appointment of an ombudsman to work directly with parents, and a pledge to ask the Legislature to approve increased benefits for parents who sacrifice careers to stay home and care for their injured children.
Lawmakers created NICA in 1988 as an answer to the demands of obstetricians, who complained that rising medical malpractice premiums would drive them out of the market. The law prevented parents from suing their doctor and hospital when a child was born with a specific type of injury, profound brain damage caused by oxygen deprivation or spinal impairment.
In exchange, parents were promised that NICA would provide “medically necessary” and “reasonable” medical care for the rest of a child’s life.
The pledge often proved to be empty.
In April, the Miami Herald, in partnership with the investigative newsroom ProPublica, published a series of stories, called Birth & Betrayal, documenting how the program accumulated what is now $1.7 billion in assets, seeded by physicians’ annual fees, while often forcing families to beg for help. Since then, at least two state investigations — one by the auditor general, another by the Office of Insurance Regulation (OIR), an arm of the Florida Cabinet — confirmed the series’ findings.
In the final days of this year’s legislative session, lawmakers unanimously passed a reform bill. It hiked the one-time parental award from $100,000 to $250,000, retroactive to all 224 current participants, increased the death benefit from $10,000 to $50,000, retroactive to all 206 deceased children, added $100,000 for home modifications, guaranteed transportation, and pledged the program would prioritize the welfare of participating children.
The law also added a NICA parent and an advocate for disabled children to the board, for the first time.
At Thursday’s board of directors meeting, NICA’s newly installed executive director, currently acting on an interim basis, presented the OIR audit’s findings.
Following DeBeaugrine’s comments, the lone NICA parent on the board, Renee Oliver, echoed his sentiments, saying family members had told her they were hungry to have their pain acknowledged.
“It wasn’t right,” Oliver said. “It was unfair treatment — not just for parents, but to our children. I’ve heard parents who want to hear the board say ‘we do hear you.’ They do want to hear some sort of validation.”
DeBeaugrine replied: “There’s a reason the Legislature passed the bill. There’s a reason there’s a new board of directors and a new CEO and we are moving in a different direction. Things were not going well.”
The board began its meeting Thursday by hearing a presentation from the interim director, Melissa Jaacks, detailing the program’s different direction. Jaacks began by saying she has spent much of her first month speaking with parents who depend on NICA for their children’s care.
The conversations led her to several conclusions, she said, including: “The best approach is to listen to families tell you what they need. They know what they need. We don’t.”
The most significant need, Jaacks said, is for administrators to update and rewrite NICA’s benefits handbook. The handbook is intended to be a detailed accounting of what parents can expect from the program, a menu of what families are entitled to receive, and what they are not. But, Jaacks said, the manual is extremely vague, and sometimes left parents confused as to their options.
A critical concern — and one identified by the Office of Insurance Regulation audit — is what recourse parents have when a request for help is denied. Generally, parents were told they were not eligible for a service if it wasn’t identified in the handbook. But the handbook failed to mention many covered items. And they were never told they could appeal a denial, or to whom.
It was a classic Catch 22.
Said Renee Oliver, the lone NICA parent on the board: “You were only eligible for a benefit if it was in the handbook.” But, she added, “There was nothing in the handbook. ... If something was not considered eligible because it was not in the handbook you are in limbo. You have nowhere to go, up or down.”
Said DeBeaugrine: “To me that is disturbing. ... People ought to have someone to talk to when they are denied.”
Jaacks told the board she was initiating some reforms immediately. Those include the hiring of a “parents’ advocate” — similar to an ombudsman, as recommended in one of the audits — as well as looking into creating a parents’ advisory board to advocate for families in their dealings with administrators.
Jaacks also is exploring the hiring of a medical director to advise her and her staff when parents seek new benefits, such as experimental treatments or therapies. In the past, the OIR audit found, caseworkers and former Executive Director Kenney Shipley often relied on Google.
“Ms. Jaacks is a fixer,” DeBeaugrine said. “And if we’re fixing something that means it was broken.”
Some of the necessary fixes, Jaacks and board members said, will require new legislation. On Thursday, the board voted unanimously to lobby the Legislature to amend the NICA law further to accomplish some of the more far-reaching reforms.
One such reform would increase the benefits paid to parents who give up jobs or careers to care for their children — and to adjust the payment structure so that all families are paid the same. Currently, for example, parents who leave jobs to give care are paid more than parents who weren’t employed when their child was born.
Most NICA parents are paid $15 per hour, the Medicaid home health aide rate — a benefit laid out in state statute for a family member who left employment in order to provide care. Family members who were not employed are paid $11 per hour — though board members voted Thursday to increase the amount to $15 per hour in January.
The board also agreed to urge lawmakers to extend the $150,000 supplement paid to current NICA families to the parents of children who are deceased — a request resulting from tearful pleas from parents who lost their children. Board members also will support their request to have mental health subsidies extended to them, as well.
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Those parents have spoken at every meeting since the new board was appointed, and some were there Thursday, too, including Leanne Lewis, whose son, BradyJ Lee Yarbrough, succumbed to his severe birth injuries on April 20, 2019, at age 4. “We’re angry. We’re sad,” she told the board through tears. “It never stops hurting.”
“If I just had enough time to learn coping mechanisms,” she told the board. In a previous meeting, Lewis said her job in a dental office didn’t provide nearly enough money to pay for counseling for her and her two other children.
About 40 parents watched the meeting, held via Zoom, and several shared pictures of their children in wheelchairs or in bed instead of live video of themselves, as they have in the past.
For perhaps the first time, several parents expressed gratitude for both the breadth of the recent reforms, and the speed with which they were implemented.
“A lot has changed over the last month for the better,” said Ashley Hammer, whose stepson, Brennan Hammer, is in the program. “The last month has been a breath of fresh air, a clear culture shift thanks to the interim executive director.”
“The NICA executive director spoke about plans to help NICA families. This was music to my ears. I never felt like it was NICA’s mission to help the families.”
Some parents say the changes have not gone far enough. Dan and Jennifer Bookhout’s daughter Arwen was born — and injured — on July 11, 2015, and she was accepted into NICA early the next year. “Initially, NICA was a huge relief and boon for our family,” said Dan Bookhout. “For the first year of our daughter’s life, our web design business had suffered greatly and we acquired tremendous debt while trying to work and provide therapies and medical interventions.”
But, over time, “our experiences with NICA showed us that our daughter wasn’t being cared for in the way NICA had led us to believe she should be, or would be,” Bookhout said.
The family had to ask again and again for benefits, he said. “This was incredibly frustrating, since it took months, and sometimes years, to get benefits that were owed to my daughter.”
The Bookhouts had hoped, and anticipated, that the recent reforms, as well as the legislation signed by Gov. Ron DeSantis in June, would greatly improve their daughter’s life. Many frustrations, however, “still persist,” Bookhout said.
“Our caseworker reimbursed us for some items which dated back more than four years — and then afterward said that was an error.”
In an earlier version of this story, a quote attributed to NICA mother Jackie Amorim was in fact spoken by a different NICA mother, Ashley Hammer, the stepmother of 19-year-old Brennan Hammer.
This story was originally published December 10, 2021 at 9:13 AM.