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.

Florida Gov. Ron DeSantis has signed legislation overhauling a controversial state program that provides lifelong care for children born with catastrophic brain damage, approving the most far-reaching reform in the program’s 33-year history.

With DeSantis’ signature Monday night, parents who participate in the Birth-Related Neurological Injury Compensation Association, or NICA, will get an immediate $150,000 cash benefit and the pledge of Florida lawmakers that they will no longer have to fight with administrators for wheelchairs, medication, therapy and other services for their severely disabled children.

That’s on top of the $100,000 the law previously provided, which had not been increased since the program’s inception. Families said that original amount fell far short of providing for a severely disabled child.

The law, which takes effect immediately, follows an investigation by the Miami Herald, in conjunction with the investigative newsroom ProPublica, that found NICA had generated nearly $1.5 billion in assets — largely through the investment of assessments paid by doctors and hospitals. At the same time, families complained, administrators frequently delayed or denied claims for medication, therapy, equipment and nursing services to parents struggling to pay their bills.

The legislation is, in many ways, a rebuke of NICA’s leadership, which had for decades run the program with little transparency. Parents said the program denied claims and made it difficult for them to access care for their children with severe and permanent brain damage. In one 2013 email obtained by the Herald, NICA’s director wrote that the program was “not here or funded to ‘promote the best interest’ of the children.”

The new law, passed unanimously by both chambers of the Legislature, says otherwise: One provision requires that “the association shall administer the plan in a manner that promotes and protects the health and best interests of children with birth-related neurological injuries.”

Parents and guardians of children in NICA said they were glad to see the governor approve the changes, but some also wondered why it took years for the state to address the program’s inadequacies.

“It feels good to be acknowledged, not just acknowledged but that they’re trying to make things right,” said Jennifer Pham, whose younger brother, Justin Nguyen, was accepted into NICA in 1998.

Pham, whose family’s story was reported by the Herald, said her family had reached the point of desperation after years of fighting with program administrators to get what Justin had been promised.

“Why do families have to go through so much to get change?” said Pham, 31, whose family lives in Jacksonville. “I feel like anytime anything good happened with NICA was because my family was at the edge. We were at rock bottom, and then they wanted to help out.”

NICA administrators said in a prepared statement that the organization “wholeheartedly supports and appreciates” the legislative reforms.

“We are eager to provide these new benefits and have already begun implementing the new language and protocols envisioned in the legislation,” administrators said, noting that the program recently launched a revamped website and updated the benefits handbook. “Our 17-person team is committed to meeting all statutory deadlines and will do everything we can to give NICA families the support they need in navigating the claims process.”

For most of its history, NICA operated in obscurity. Lawmakers created the program to manage the care of children born with severe physical and cognitive disabilities as the result of oxygen deprivation or spinal cord injury at birth.

Families were steered into the program by a 1988 law — one of only two in the nation — that severely restricts the parents of certain brain-damaged children from suing their obstetrician or the hospital where their child was born. NICA was created to protect obstetricians from ruinous legal judgments for some of the most expensive medical mistakes, thereby lowering malpractice liability insurance premiums.

Parents said they were often treated with indifference and contempt by administrators who, they believe, cared more about their investment portfolios than the lives of frail and disabled children. Administrators hired a private investigator to tail one boy’s parents after they appealed NICA’s refusal to pay for therapy.

Yamile “Jamie” Acebo of Pembroke Pines — whose hardship was detailed in a Herald story — said the help her daughter, Jasmine, received from NICA often was delivered grudgingly, and late, if at all.

“They were just trying to nickel-and-dime me,” Acebo said of her experience with NICA. “It’s like it was their savings account — like it was theirs and they were not really doing anything to help people.”

But Acebo said she’s happy that future NICA families will get more freely what she had to fight for. “Finally something is going to get done,” said Acebo. “They are finally going to do the right thing. A lot of these families are struggling and should not have to struggle.”

Among other provisions, the new law will give families the means to fully cover funeral and burial expenses if a child in NICA dies. Acebo said she couldn’t afford both a coffin and funeral when 27-year-old Jasmine died in 2017. She said she had had to cremate her daughter, though her faith frowns upon the practice. “Let me tell you,” she said, “I had to scrape and scrounge, and people had to give me money for my daughter’s funeral.”

With DeSantis’ signature, “on top of grieving a child, they won’t have to worry, ‘Where am I going to get money to bury my child?’” Acebo said of parents still in the program. Because her involvement in NICA ended with the death of her daughter, Acebo will not receive the added $150,000. But she will receive an enhanced death benefit, $50,000 for death expenses, not the $10,000 the law previously allowed.

Florida Chief Financial Officer Jimmy Patronis, whose agency oversees NICA, said in a prepared statement Monday night that the legislation “fundamentally reforms” the program.

“This law represents a major paradigm shift,” Patronis said. “As of now, NICA must be fully engaged in the overall well-being of these families and children. Overall, these families are going to get more relief, and it is our job to ensure the board is holding NICA accountable and seeing these reforms are implemented.”

In addition to the increase in the one-time payment and the extra allotment for parents of deceased children, the law provides:

  • A $10,000 annual mental health benefit for families.
  • Representation on the board of directors by a NICA parent and an advocate for disabled children, and a six-year term limit for all board members.
  • An increase in the lifetime housing assistance and home modification benefit from $30,000 to $100,000.
  • Money for wheelchair-accessible vans and a “reliable method of transportation” for the life of children in care.
  • A code of ethics for administrators and board members.
  • An appeal process at the Division of Administrative Hearings, where NICA petitions are filed, for families to dispute NICA denials.

In a prepared statement, one of its legislative sponsors said the law “will help ensure so many struggling families get the help and care they deserve.”

“As a mother of two, I know there is nothing more important than ensuring your child has the proper care they need to live a long healthy life,” said state Rep. Traci Koster, a Safety Harbor Republican and the law’s House sponsor. “This legislation brings needed changes to the NICA program and improves services that they provide.”

Sen. Lauren Book, a Plantation Democrat who co-sponsored the legislation in the upper chamber, said, “No family should have to beg for the treatment and supplies their children need while a quasi-governmental agency puts up roadblock after roadblock.”

Sen. Danny Burgess, a Zephyrhills Republican who also co-sponsored the legislation, said: “On behalf of all of the NICA families who have struggled, this is a light at the end of a very dark tunnel.”