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 mothers 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, Maries grandfather. She was a part of us. It was like losing a leg or an arm or a heart. We are all hurting.
Maries 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 Departments 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 states 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 Miamis 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 parents 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 Departments 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, theyve 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.
State policies and practices have favored institutional care at the expense of community-based services, the letter said.
Some children, the Justice Department said, have been in a facility for a decade or longer, including some who entered a facility as toddlers.
Both nursing home industry groups and the Agency for Health Care Administration, which regulates the industry, have defended the practice, saying some youngsters are too frail or too disabled to live at home.
Nursing homes serving children must meet different criteria than facilities that serve only older adults, AHCA told The Miami Herald in a prepared statement. They are strictly regulated to ensure that the appropriate services are provided specifically for children. Nursing homes that serve children are designed to service persons with complex medical needs; they provide a safe, secure and enriching environment for the children in their care.
The Florida Health Care Association has called the federal report that criticized the practice and the media reports that followed an attempt to demonize these facilities.
The unfortunate reality is that these pediatric facilities are the safety net for children who cannot be cared for at home because either their medical needs are too complex or they have no family to rely on, J. Emmet Reed, the associations executive director, wrote in a statement. Fragile does not begin to describe their care needs they require ventilators, feeding tubes; they have traumatic brain injuries or may even be comatose.
Reed said youngsters in nursing homes live separate from frail elders, and receive care specific to the needs of developing children. Nurses, therapists and aides care for them and love them as if they were their own, Reed wrote.
Youll find handicap-accessible playgrounds, toys, stuffed animals and a brightly colored, kid-friendly living environment. Education is an important component, and through collaboration among the families, medical team and school system, each childs schooling needs are met. Youll also find more than twice the number of staffing hours per child than that which is required for seniors.
The healthcare agencys own records, however, as well as records from other groups, show that is often not the case.
As far back as 2009, AHCA inspectors found nine children sitting around a TV watching cartoons at 8:30 a.m. with no hands-on activity at the Westminster Community Care of Orlando nursing home. Two caregivers were in the activity room watching the residents as they sat before the television, a report said, adding there [was] no interpersonal interaction observed between staff and the children.
Inspectors said one frail resident was supposed to receive daily visits from activities staff to prevent social isolation, but no such visits occurred.
Another resident, who suffered from cerebral palsy, seizures and had a feeding tube, was supposed to have daily visits for socialization and stimulation, home schooling, and music. But during a two-day inspection, observers found only a TV tuned to a news program. An administrator acknowledged the child was receiving no education.
During a complaint investigation that same year, AHCA inspectors found a child slumped in a stroller in front of a television, with a helmet on in case the child fell. Administrators told the healthcare agency the childs wheelchair was out in the shed, and that an order for a new wheelchair was supposed to have been made months earlier. No one in the nursing homes physical therapy department had evaluated the child to secure funding from Medicaid, a state insurance program for the needy. Inspectors faulted the home for failing to provide physical therapy for some of the children in the pediatric unit.
Last May, Disability Rights Florida, a federally funded advocacy group, wrote a detailed report on a 3-year-old foster child who has spent his entire life at a small nursing facility in Orlando. Disability Rights has recommended the boy be removed from the home and placed with an adoptive family. While the institution is in a wonderful community setting, a report says, the homes staff does not take the children to the park, or for walks around the block to meet other children.
An investigator who visited the little boy earlier this year observed no books, flash cards, blocks, puzzles, educational DVDs, coloring books, painting items, and limited interactive toys in the boys room. The boy and other youngsters in the home were placed in front of a TV watching cartoons for several hours.
The advocacy group said the boy was at great risk of developing Reactive Attachment Disorder, an often severe psychiatric condition that leaves children unable to form emotional bonds.
Late last June, AHCA inspectors found 17 sick and disabled children being supervised by one adult at the Golden Glades Nursing and Rehabilitation Center, the home formerly known as Florida Club Care. One little girl was punching herself in the head with both of her hands as the sole caregiver attempted to intervene. The 16 other children, a report said, were yelling at the aide for attention.
The home was supposed to have two other staff members assisting the activities director that day, but they both had the day off, a report said.
In September, a team of inspectors from the Department of Children & Families as well as Miamis private foster care agency visited Golden Glades again. They found that very little had changed: The children did not have toys in the rooms and minimal toys in the playroom, the team wrote.
There is an activity board by the nurses station that lists daily activities, however, our assessment is that there did not seem to be structured activities at the time we were there, the team wrote
AHCA inspectors faulted Florida Club Care in 2009 when they found nurses had placed orthotic splints designed to improve the use of a childs hands on the wrong hands. The devices were important, a report said, to protect the childs skin integrity as well as range of motion.
FAILURE TO PROTECT
Healthcare administrators filed a complaint against Westminster Community Care, where the pediatric unit is called Grandmas House, in 2007, claiming the Orlando homes failure to protect a severely disabled child led to life-threatening respiratory distress. The child, whose gender a report does not specify, was blind, intellectually disabled, couldnt speak or eat and breathed with the aid of a tube in the childs windpipe. In July 2007, the child was diagnosed with double pneumonia, 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 the youngsters throat, as well as a Christmas tree light in the childs lungs.
Westminster, which is now called Orlando Health and Rehabilitation Center, agreed to pay a $3,750 fine in a settlement with the state.
A 2008 complaint claimed Westminster had failed to follow a doctors orders that a child with cerebral palsy be given extensive physical therapy to ensure the resident did not suffer any deterioration in the use of his or her arms and legs. The child was supposed to be given a detailed regimen of restorative therapy to the arms and legs five days-per week, and be allowed to stand up three days each week. But notes and interviews showed the child had been given such therapies only once, an AHCA report says.
At Grandmas House which advertises on the Internet that it provides a homelike atmosphere that fosters intergenerational healing one child who has autism and a cognitive disorder suffered an injury to the hand when nursing staff failed to remove protective mittens at the required interval. The 9-year-olds left arm was swollen, discolored and bruised from the elbow to the fingertips where the hand mitt had been in place, a July 2009 report said.
Some nursing home mishaps involving children are never documented by the healthcare agency.
In 2008, a pediatrician with the Department of Healths Child Protection Team in Miami, which investigates some allegations of child abuse and neglect, wrote a scathing letter to then-Gov. Charlie Crist, accusing an AHCA inspector of botching an investigation into reports that a severely disabled foster child had been burned at Florida Club Care.
In his letter, pediatrician Michael D. Strong said he was shocked by the AHCA inspectors apparent lack of due diligence in a probe of the case that found no fault in the nursing homes actions. The 12-year-old girl, who suffers from cerebral palsy and cannot communicate, had sustained second-degree burns to her hand and thigh and no one at the home had taken responsibility for the injuries.
THE DEATH OF MARIE
The greatest tragedy involved Marie Freyre, a curly-haired cherub with a huge smile but enormous challenges.
The backdrop to Freyres story is displayed in 40 color photos at the youngsters online memorial: Marie as a smiling infant wrapped in a white gauzy blanket and surrounded by white teddy bears and a white reindeer; a smiling Marie in a tangerine-colored dress, with Minnie Mouse her arms outstretched in a welcoming gesture in the background; a smiling Marie, bows in her hair, so covered with stuffed toys that much of her body has disappeared; a smiling Marie in a lavender party dress, her hair festooned with ribbons, dwarfed by a yellow birthday cake and a candle shaped in the number 3.
She was a very happy baby, her grandfather said, because she was loved by all.
But the photos reveal another truth: Marie is never standing. Her hands are clenched in a fist, victims of the cerebral palsy that devastated her life.
Born with fluid surrounding her brain, and a seizure disorder in addition to the crippling cerebral palsy, Marie lived with her mother until a series of setbacks brought her to Tampa General Hospital, where a Hillsborough County judge asked to determine custody of the girl ordered that she be returned to her mother, Doris Freyre. Almost a month later, said the familys Tampa attorney, Peter J. Brudny, the hospital placed her in an ambulance for what became a bumpy, five-hour, trip to the Miami Gardens nursing home the only one that would accept Marie, her grandfather said. Her mother and grandfather pleaded in vain with hospital staff not to take her.
When they took Marie out of my arms, it destroyed everyone in the family, said 59-year-old Doris Freyre.
Joe Follick, a spokesman for the Department of Children & Families, said he does not know why a private foster care agency under contract with the state sent Marie to a Miami-Dade nursing home in violation of a judges order. The agency, Hillsborough Kids, no longer works with the state. The priority of the department, he said, is always to keep families together, keep children in family settings and consider the best needs of a child and their family in often difficult and complex situations.
Marie arrived at Florida Club Care Center on April 26, 2011 at 5:30 p.m. on a stretcher. Patient was screaming, records say.
At 9 p.m., the next note in her chart said Marie was given applesauce and comfort measures. At 11 p.m., Marie was noted to be screaming, as she was in the next notation, at 2 a.m.. At 5:40 a.m., notations say Maries breathing was labored, and she was warm to the touch. Five minutes later, Marie was unresponsive.
The 14-year-old died of a heart attack at 6:54 a.m. at Jackson North Medical Center. Health regulators faulted the nursing home for a spate of lapses:
Maries condition was not assessed by nurses until three hours after she arrived.
Theres no record that the nursing home ever told a doctor she was struggling to breathe.
Records suggest Marie did not receive life-saving anti-seizure drugs prescribed for three times each day past 9 or 10 a.m. the day before she died.
Despite the enhanced funding for pediatric residents, the nursing home acknowledged it had no policies for treating children differently than frail elders.
Even after Marie died, the home failed to notify the state, as required by Florida law. When questioned about the lapse, the homes administrator took no responsibility for the girls death. She did not expire in the facility, he said. She expired in the hospital.
Federal regulators assessed a $300,000 fine, the largest by the feds against a nursing home in recent years. AHCA imposed a fine of $7,500, a spokeswoman said, but the fine has yet to be collected. The home currently cares for 37 children.
We are still hurting very, very much, said Jose Freyre, the girls grandfather. This is something we will never forget, and we will never forgive including the state of Florida.
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