Florida’s Birth-Related Neurological Injury Compensation Association (NICA), a program that underwrites care for children born with severe neurological problems, is being reported by Florida parents for repeatedly denying claims for assistance. And a new investigation from ProPublica in partnership with the Miami Herald details exactly what the Florida agency was spending funds on. After years of reports of difficult communication and arbitrary denials of claims for the assistance the agency exists solely to provide, ProPublica reports that NICA instead paid $200,000 to a PR firm to rehabilitate the agency’s image. This is in addition to a practice of denying necessary assistance repeatedly, forcing parents into court proceedings in which NICA would spend substantially more on legal fees than it would have on simply paying the claims.
What is NICA?
NICA has been around since 1988 when the Florida Legislature formed the agency as a response to obstetricians worried about rising medical malpractice premiums. These doctors claimed that malpractice lawsuits that resulted from children being born with severe disabilities from oxygen deprivation or spinal injury would drive them out of practice, and NICA was born as a way to preempt such lawsuits by providing comprehensive lifetime care for these children. But over the years, many parents have reported that NICA seems wholly unwilling to provide the assistance that is the agency’s entire reason for existing. Instead, according to the ProPublica report, parents feel that NICA is focused solely on growing its nearly $1.7 billion fund. The report goes on to claim that NICA denies claims big and small, setting up a scarcity battle in which parents are forced to fight it out for resources, pitting them against each other to obtain everything from wheelchairs and vans to medication and smaller home appliances.
And parents report to ProPublica that lodging complaints about arbitrary denials and the tedious approval process only served to make things worse. The report alleges that NICA even hired a private investigator to keep tabs on one family. Additionally, the agency refused to share contact information amongst the parents in the program, cultivating a culture of secrecy around the program that prevented parents from comparing notes about the agency’s handling of their respective claims. NICA used the privacy laws of HIPPA as a justification for this practice, despite such information having been available via the Division of Administrative Hearings for three decades.
As one parent put it:
“It was an intentional effort to keep families separate. Isolating us was a way of consolidating power.”
And within that culture of secrecy, NICA could, according to reported allegations, safely continue its practice of arbitrary denials. That is until reports from the Miami Herald threatened to shed light on the agency’s practices. In response to the newspaper’s investigation and requests for interviews in 2019, NICA opted to address the impending reporting head-on by paying a Florida PR firm $200,000 to “rehabilitate” the agency’s image. That’s certainly one approach to the impending scandal. One could argue that perhaps the more cost-effective and moral approach would be to simply begin paying claims properly and providing the assistance that the agency exists solely to provide. But instead, in January of 2020, NICA contracted Florida PR firm Sachs Media headed by Ron Sachs to provide “reputation management, strategic counsel and guidance, message development, thought leadership, media relations, and op-eds and letters to the editor,” in an effort to convince the public that the agency was making a good faith effort to meet the needs of the children in the program. What resulted was the firm inserting positive op-ed pieces and news stories into Florida media that highlighted isolated incidences of NICA approving expensive assistance to a few families in need in an attempt to make those incidences seem like the rule, not the exception. While $200,000 was going to Sachs Media in early 2020, NICA was at that same moment continuing to reject requests for much-needed wheelchairs, therapies, and in-home nursing.
And the PR efforts turned out to be all for naught. The Herald and ProPublica went ahead with their reports, and the heart-warming yet isolated media stories did not go very far in persuading the public or the Florida legislature that NICA was operating in good faith. As a result of the reporting, state lawmakers demanded that NICA begin to listen to parents in order to produce real, meaningful change. That change started right from the top when the entire governing board resigned after intense scrutiny and criticism, opening up spots for new leadership. Now, for the first time in NICA’s 33-year history, the newly reconstituted board includes a NICA parent and an advocate for people with disabilities. They are even considering forming a parents’ council.
Another change welcomed by parents: Parental contact information has been made available, and NICA parents are now able to find each other. Discovering each other has meant being able to support each other through their journeys via a newly formed Facebook group where they share their experiences.
At a recent NICA board meeting, the newly appointed chairman told parents something they’d been waiting years to hear: “You have been heard.”
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