For 14 years, Doris Freyre cared for her profoundly disabled daughter in her modest Tampa home, pureeing fresh fruit, yams and vegetables and surrounding the girl with family photos and pictures of angels.
Marie Freyre died in the care of a $506-per-day nursing home — sobbing, shaking and screaming for her real home.
She never saw her Minnie Mouse plush toy, her Winnie the Pooh or her Cabbage Patch Kids again. She never again saw her Mami or her Abuela.
Marie had been taken to the Florida Club Care Center against her mother’s wishes. Social workers insisted the Miami Gardens nursing home was the safest place for the 14-year-old, who suffered from, among other things, cerebral palsy and seizures. But the evening Marie arrived, records show, nurses did not give her life-sustaining medications and she may have had no food except applesauce.
When Marie struggled to breathe in the two hours before she died, no one at the nursing home called a doctor.
“We are still mourning for her,” said Jose Freyre, Marie’s grandfather. “She was a part of us. It was like losing a leg or an arm or a heart. We are all hurting.”
Marie’s death stands as a bitter reminder of a dog fight between state health regulators and federal civil rights lawyers, who have accused the state of warehousing sick and disabled children as virtual potted plants. The U.S. Justice Department’s Civil Rights division has threatened to sue the state if it does not take steps to care for sick children outside of large institutions.
Records obtained by The Miami Herald from the state agency that has defended the practice of housing children in nursing homes, as well as records from other agencies and advocacy groups, show the children in such facilities often receive little education, are provided few activities and can suffer grievous neglect. Two of the six nursing homes that house children are on the state’s “watch list” of deficient facilities; one is on both the state list and a federal “special focus” list of marginal homes.
“Nursing homes are not a place for children,” said Dr. Gwen Wurm, who teaches clinical pediatrics at the University of Miami’s Miller School of Medicine. “For children who cannot walk or talk, a smile may be the only form of communication. I have seen seriously disabled children, with terminal genetic disorders, light up at the sound of a parent’s voice. We should be doing all we can to keep children in a family setting,” added Wurm.
How nursing homes became the residence of choice for severely challenged children is at the core of the Justice Department’s battle with the state. Florida, the DOJ said in a letter, “has planned, structured and administered a system of care that has led to the unnecessary separation and isolation of hundreds of children in nursing facilities.” Agency administrators have “systematically” cut services for parents, making it almost impossible for them to care for their sick children at home, the letter says. At the same time, they’ve agreed to pay nursing homes a more generous rate for children than for elders, creating an additional incentive.
Florida healthcare administrators will pay nursing homes about $213 to care for a frail elder, records show. But the state will reimburse homes more than $506 per day to care for a sick child.