A Florida program promises brain support supplement to households of severely mind-damaged infants. Instead, parents have been pressured to choose between parenting and a paycheck. Poor communication and bureaucratic hurdles have made the situation worse. ProPublica is a nonprofit newsroom that investigates abuses of energy. Sign up to receive our largest stories as soon as they’re published. This article was produced in partnership with the Miami Herald, which is a member of the ProPublica Local Reporting Network. JACKSONVILLE, Florida - Over two decades, Choi "Julie" Nguyen bounced from one low-paying job to the next: dishwasher, custodian, manicurist. As a single mother raising two daughters and a profoundly disabled son, Nguyen may by no means hold a job for long. Inevitably, the nurses Nguyen relied on to care for her son, Justin, would arrive late or not in any respect. Who would suction his mechanical airway, fill his feeding tube or turn him in bed to forestall strain sores? Who was going to sleep on the couch at the hospital when Justin had surgery or fought life-threatening infections?

Ultimately, Nguyen confronted the not possible choice of holding down a job and paying the payments - or taking care of Justin and being constantly, hopelessly broke. Florida’s Birth-Related Neurological Injury Compensation Association had agreed to assist Nguyen shoulder the crushing financial weight of elevating a toddler whose oxygen deprivation at birth left him catastrophically Mind Guard testimonials-damaged. Under NICA’s personal rules, she mustn't have had to decide on between parenting and a paycheck. State lawmakers created NICA in 1988 to stem what the law’s advocates called an exodus of obstetricians fleeing Florida and Mind Guard testimonials its excessive malpractice insurance premiums. The law holds down insurance coverage costs by shielding medical doctors from probably ruinous malpractice awards for beginning accidents like Justin’s, which require a lifetime of medical care. It also forecloses lawsuits from mother and father like Julie Nguyen. In exchange, NICA agreed to compensate her claim in 1998 with $100,000 upfront and a pledge that future expenses for her son’s "medically mandatory and reasonable" care would be paid. In October, Nguyen and her daughters, Jessica and Jennifer Pham, Mind Guard testimonials 32 and Mind Guard testimonials 31 respectively, learned - from Miami Herald reporters - that NICA offers many more advantages than they ever knew were accessible.

Though Jessica and Jennifer Pham long had informed Justin’s NICA caseworkers concerning the family’s struggles, they said NICA never offered, nor even mentioned, the one factor that will have made the best difference of their brother’s life: a steady paycheck for Nguyen for caring for her little one. Now 24, Justin has lived far longer than docs predicted. It has not been an easy journey, Jennifer Pham stated. "It always felt like we have been alone in this," she mentioned. NICA administrators would not agree to an interview but answered questions about Justin’s family by electronic mail after Jennifer Pham formally waived privacy protections. Administrators mentioned they weren’t aware Nguyen, 60, was having problems with in-dwelling nursing because it was being paid for by Medicaid, a separate state insurer for low-earnings and disabled Floridians. "NICA additionally would not have been independently conscious if Ms. Nguyen was having difficulty sustaining employment," the program added.

In 2004, NICA said, the program mailed a benefits handbook to all households in this system - marking the primary time within the program’s historical past that benefits have been spelled out in writing for them. Nguyen, a Vietnamese immigrant with a limited command of English, couldn't read it. Although 20% of Floridians were born in one other country, in response to the Census Bureau, Mind Guard testimonials the NICA handbook is printed only in English. Jennifer Pham said NICA absolutely knew the family was struggling with nurses, the insurers that administer Medicaid’s advantages and Justin’s fixed hospitalizations - as reflected in greater than 8,000 pages, obtained by the Herald and ProPublica, documenting NICA’s interactions with the household. In October 2020, in the future before she spoke with the Herald for the primary time, Jennifer Pham wrote to NICA pleading for help with nursing because the coronavirus pandemic made caregiving a challenge. The younger of the sisters had made related complaints to Justin’s caseworkers in the past, including in August 2017 when she had the staffing company ship NICA a listing of dates that nurses had missed their shifts, emails show.