Politics & Government

Birth & Betrayal: Impact of a Miami Herald/ProPublica investigation

Florida’s NICA program promised to help baby Jasmine Acebo, severely disabled at birth, but failed her and her family at every turn.
Florida’s NICA program promised to help baby Jasmine Acebo, severely disabled at birth, but failed her and her family at every turn. emichot@miamiherald.com

What the Miami Herald, ProPublica reported

In collaboration with the investigative reporting nonprofit ProPublica, the Miami Herald published a series of articles revealing how a program created to help the families of children with profound birth-related brain damage hoarded assets while denying families basic care and services, including wheelchairs, therapy, transportation and in-home nursing.

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When families entered the program they lost any right to sue doctors or hospitals over their child’s injuries. The law promised “medically necessary” and “reasonable” healthcare — but administrators often spent more money fighting families than providing care. The state-sponsored program’s assets, sustained by fees paid by doctors and hospitals that benefit from the ban on lawsuits, now total nearly $1.5 billion.

How the state responded

The Florida Legislature rewrote the law governing the Birth-Related Neurological Injury Compensation Association, or NICA, making it much harder for the program to deny services and care. Additionally, parents of children in the program were awarded an immediate $150,000 supplement to help families cover the costs of care, and an additional $10,000 annually for mental health treatment.

NICA parents whose children had died received retroactive compensation for final expenses. NICA’s board, long dominated by insurance and healthcare industry professionals, exited en masse, with parents and disability rights advocates given seats — and a voice in the program’s management — for the first time.

The board will now pick a replacement for Executive Director Kenney Shipley.

The original stories can be found here. (Click “expand all” beneath series logo.)

This story was originally published September 16, 2021 at 6:48 PM with the headline "Birth & Betrayal: Impact of a Miami Herald/ProPublica investigation."

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Carol Marbin Miller
Miami Herald
Carol Marbin Miller is the Herald’s deputy investigations editor. Carol grew up in North Miami Beach, and holds degrees from Florida State University and the Columbia University Graduate School of Journalism. She has written about children, elders and people with disabilities for 25 years. Stories written by Carol have influenced public policy and spurred legislative action, including the passage of laws that reformed the state’s involuntary commitment, child welfare and juvenile justice systems.
Daniel Chang
Miami Herald
Daniel Chang covers health care for the Miami Herald, where he works to untangle the often irrational world of health insurance, hospitals and health policy for readers.
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