A Florida agency tasked with disbursing state funds to assist people born with neurological disorders was recently accused of withholding aid – but instead of pursuing change internally, the agency spent hundreds of thousands of dollars hiring a public relations firm, a new ProPublica investigation found.
The Birth-Related Neurological Injury Compensation Association (NICA) spent nearly $200,000 hiring a PR firm while it was under investigation by ProPublica and the Miami Herald. The news outlets were in the midst of uncovering a “no, no, no culture” from the agency, one parent told reporters.
That parent, Dan Bookhout, said that he constantly had to fight NICA for aid – so it was suspicious when the agency suddenly offered him a $30,000 device that would help his 5-year-old daughter walk. The agency also asked Bookhout to help promote the device to other parents.
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That offer appears to have been part of a strategy recommended by the PR firm Sachs Media. While NICA rejected requests for wheelchairs and other aid for people with disabilities, it solicited Sachs to help the agency get out ahead of reporting on its alleged corruption.
“The Miami Herald has been conducting an investigation into NICA for several months, submitting numerous requests for public records and interviews,” Sachs executive Ryan Cohn wrote in an email to NICA in late 2019. “We see this as the path forward to win in the court of public opinion and to protect your mission and the future of the organization.”
After offering the device to Bookhout, the PR firm placed two stories in a local newspaper, praising the agency and its offer to buy devices to help children walk. The agency also offered contact information for parents in the program to the firm, despite having previously withheld that information from parents who sought to form a community around taking care of children with disabilities.
The agency, which has nearly $1.7 billion in funding, currently faces a state audit. NICA was created under a law that bars parents from suing medical officials, with the promise that they would receive financial assistance from the state – but reporters have found that families have largely been deprived of that aid. Instead, parents have had to fight to receive critical resources like drugs and blenders that make food more accessible. The agency has also repeatedly resisted distributing larger items like wheelchairs.
Other investigations into the agency have come to a similar conclusion: ultimately, it appears that NICA’s priority isn’t distributing the assistance that parents were promised, but instead ensuring that it can continue to withhold aid.
The Miami Herald found that since the agency’s founding in 1988, it has spent around $18 million on lawyers and lobbyists, often with the aim of engineering methods to decrease aid. They paid one pediatric neurologist $1.1 million, over the course of years, to prevent his own patients from receiving the aid that they needed, the Miami Herald reported.
In response to these reports, the Florida legislature has issued reforms that mandate higher first-time payments and increasing other benefits. Parents say that there have been improvements since that bill was signed, but it’s unclear if the changes will be temporary.