For 14 years, Doris Freyre cared for her profoundly disabled daughter in their Tampa, Fla., home. Marie was fed through a feeding tube, and Doris pureed fresh fruits and vegetables for her and made sure her other needs were met. She surrounded Marie with family photos and pictures of angels.

Despite this excellent and loving care, Marie Freyre died at a $506-per-day nursing home—sobbing, shaking and screaming for her real home.

Marie was born with cerebral palsy, hydrocephalus (fluid on the brain) and a seizure disorder. She had many of the same difficulties as my own daughter. Setbacks in her health brought her to Tampa General Hospital, where a Hillsborough County judge was asked by social workers to determine custody of Marie. He ordered her returned to her mother.

HOSPITAL EVICTS CHILD TO SAVE MONEY

A month later, in violation of the judge’s order and against her mother’s wishes, the hospital put Marie in an ambulance for the five-hour trip to the Miami Gardens nursing home. Social workers insisted that the Miami Gardens home was the safest place for Marie. Family members pleaded with the hospital staff not to take her. “When they took Marie out of my arms, it destroyed everyone in the family,” said Ms. Freyre.

At 5:30 PM Marie arrived at Florida Club Care Center on a stretcher, screaming. Two hours later she was still screaming. At 5:40 AM notations say Marie’s breathing was labored and she was “warm to the touch.” Nobody bothered to contact a doctor. A short time later, Marie was “unresponsive.” She was transported to the hospital and died of a heart attack there at 6:54 AM.

Marie’s condition was not assessed by nurses until three hours after she arrived, and the nursing home never told a doctor that she was struggling to breathe. She did not receive all her life-saving anti-seizure drugs the day before she died. When questioned, the home’s administrator took no responsibility for Marie’s death. “She did not expire in the facility,” he said. “She expired in the hospital.”

CHILDREN MORE PROFITABLE THAN ELDERLY

Federal civil rights lawyers have accused the State of Florida of warehousing sick and disabled children as virtual potted plants. The real reason why this warehousing occurs has nothing to do with the well-being of children. Florida healthcare administrators pay nursing homes about $213 per day to care for a frail elder; but the state will reimburse homes more than $506 per day to care for a “sick” or disabled child! State policies and practices favor institutional care at the expense of community-based services and the health and well-being of the “patient.”

Both nursing home industry groups and the Agency for Health Care Administration, which regulates the industry, defended the practice, saying that some children are too frail or too disabled to live at home. Who are they to make those kinds of decisions about the lives of these children? Or anyone else?

One Orlando nursing home’s failure to protect a severely disabled child led to life-threatening respiratory distress. The child was blind, intellectually disabled, couldn’t speak or eat and breathed with the aid of a tube. Diagnosed with double pneumonia, that child had foreign objects lodged in his or her lungs and a temperature of 103 degrees. At a nearby hospital, the child had to be resuscitated more than once, and doctors found parts of a diaper in her or his throat, as well as a Christmas tree light in the child’s lungs. What happened to the nursing home that nearly killed this child and violated his or her rights? They had to pay a $3,750 fine in a settlement with the state.

Nursing homes and institutions, as they stand in our current society, are not places that anyone should live, especially children. Sometimes there is no other choice, but Marie had a choice. Her tragic death highlights the dangers and inhumanity of what will only get worse unless we keep moving forward with the fight for a new society, that ceaseless movement of the dialectic that compels me to look past Marie’s death: to look at the pictures of this young girl on her tribute page, and promise never to forget her and never to stop fighting.

—Suzanne Rose