Children with special needs: a ‘gravy train’ for Florida nursing homes?
FORT LAUDERDALE, Fla. — At Kidz Korner, children in wheelchairs sit parked in a hallway. It’s a nursing home, but looks more like a storage facility for kids. And it’s been Andrew’s home for more than a year.
Andrew was an outgoing high school senior. His goal was to become a firefighter, but a freak incident changed his life. Just after his 18th birthday, he had a heart attack that starved his brain of oxygen. Since he left the hospital three years ago, he’s lived in nursing homes.
Andrew’s dad, Marcello Martinez, said he would love to care for his son, now 20, at home, but he was never told he could have in-home care. According to a U.S. Justice Department investigation, the state of Florida has been pushing parents like Martinez to send children with disabilities to nursing homes like this one.
“When I show up there, there's no interaction,” Martinez said about the facility, which houses geriatric and pediatric patients in separate wings. “There's nobody there to really care for him. It's more of a system of, ‘OK, 12 o'clock, feed him, give him his meds. That's it, done deal.’”
On the first of three trips “America Tonight” made to the home, some of the kids in the hallway were desperate for attention, waving and reaching out. They weren’t doing any activities and didn’t have any toys. The calendar at Kidz Korner calls this "chillin’."
Families told “America Tonight” they had seen the same thing: children neglected for hours, left in the hallway and ignored.
We found Andrew Martinez in his wheelchair, parked in the entryway of his room, unable even to see up or down the corridor. He was moaning loudly — a sound his father told us he makes when he is distressed. None of the staff paid any attention.
“That's basically it,” Martinez said, tearing up. “It’s nothing new to me finding my son stuck in between a door. How's that facility helping him? Just stick him between a door? But that's the reality I have to deal with.”
Martinez doesn't know what will happen once Andrew turns 21 and can no longer stay at Kidz Korner. He worries that his son's already uncertain future will be further diminished by the lack of therapy. In a meeting with a therapist at Kidz Korner, Martinez learned that Andrew was receiving only two hours of speech therapy a month.
The therapist told him that Andrew doesn't follow commands and can be evaluated only on what they observe. Martinez showed her a video on his phone. “Andrew, lift your leg,” a person in the video says, and his son follows the order. “Lift your leg, Andrew. That's it!”
Federal inspectors have highlighted a litany of problems at Kidz Korner: rusty cribs, "heavily soiled" surfaces, furniture torn and in disrepair, loose handrails, dirty showers and, perhaps most alarming, only one registered nurse scheduled on the night shift to care for 59 medically fragile children. Federal standards call for at least two.
The owner of Kidz Korner declined to sit down with “America Tonight.” We received a statement from the facility defending the care children receive there: “Our dedicated staff has an exemplary record and we take our responsibilities to the children entrusted to our care very seriously.”
“State of Florida, you don't care,” Martinez said. “You don't. This is one father that can tell you that. You don't care about my son or the rest of these kids, and I see it and live it every day.”
Nursing homes’ ‘gravy train’
![Deontae Shuler, 11, lived at Kidz Korner for more than a year. “Some of the [Certified Nursing Assistants] were rough … When they change you, they turn you hard and everything,” he said.](/content/ajam/watch/shows/america-tonight/america-tonight-blog/2014/3/19/florida-childrenagravytrainfornursinghomes/_jcr_content/blog/mainpar/textimage_2/image.adapt.480.low.flabuse9.jpg)
Deontae Shuler, 11, was struck by a car while riding his bike, and is now a quadriplegic. In a little more than a year at Kidz Korner, he endured bedsores and two broken legs. He describes the conditions and treatments as “terrible.”
“Nasty food,” he said. “Some of the [certified nursing assistants] were rough … When they change you, they turn you hard and everything.”
Like Martinez, the Shulers didn't think they could get nursing care from the state in their home.
“We were told there was a government cutback on nursing care where we wouldn't get it full time,” grandmother Gheri Shuler said. “So it wasn't an option.”
After the problems began, she tried to move Deontae out of Kidz Korner. “They didn't want him to leave,” she said. “That was part of their gravy train.”
Nursing home care is expensive. Florida pays nursing homes up to $550 a day for children — twice what it pays for elderly patients and 20 percent more than full-time nursing care at home.
Attorney Matt Dietz helped the Shulers finally get Deontae out of Kidz Korner. He’s currently suing the state, on behalf of medically fragile children and their families, to force it to pay for in-home care, a suit joined by the Civil Rights division of the federal Department of Justice. Dietz said Florida has acknowledged the extra expense of institutionalizing children, and that each child in a nursing home costs the taxpayer $250,000 to $300,000 a year.
“It's a financial incentive to have these children at a nursing home,” Dietz said. “It's an annuity.”
The federal lawsuit alleges that the state is needlessly warehousing about 250 children who are sick or severely disabled, isolating them from family and community in a violation of their civil rights.
“Nursing homes are not an appropriate place for any child,” Dietz said. “A child should be with their family.”
In a 2012 letter to Department of Justice, Florida social services officials called the allegations “unfounded.”
‘They kill her’
The state’s push to institutionalize children with disabilities can have tragic results. Perhaps no story is more heartbreaking than that of Marie Freyre, who was born prematurely and suffered from hydrocephalus (also known as water on the brain), cerebral palsy and seizures. Under her mother's care, Marie had been seizure-free for four years by the time she turned 14.
“I raised my daughter with all the tender love I could give her,” Doris Freyre said.
But Doris Freyre herself is frail, suffering from herniated disks and carpal tunnel syndrome. When she asked Florida for more help for Marie, a judge ordered additional hours of nursing so that she would have 24/7 care. The state ignored that court order.
The state never even made the call to get Marie the care she needed, Dietz said. The state decided she should be in a nursing home and took her by ambulance — against her mother’s wishes and without a court order — on a nearly 300-mile trip from Tampa to Miami.
Doris Freyre
Mother of Marie Freyre
“So I ask if I could be with my daughter in the ambulance because she has no way to express herself,” Freyre said, starting to cry. “She was belted in the ambulance without food, without letting me go with her to assist her with her medicines, without water.”
Marie was supposed to take seizure medications three times a day. A federal investigation noted that when she arrived at Miami’s Florida Club Care at 5:30 p.m. that day, she was screaming and thrashing in bed. The inquiry concluded that she did not get her medication in the ambulance or at the nursing home.
The next day, Marie's heart stopped beating at 5:45 a.m. She was rushed to a hospital where she was pronounced dead just 12 hours after arriving in Miami.
“There's no other way of saying things: They took her out of my arms and they kill her,” Freyre said. “My daughter was healthy when they took her away. And the next day she was dead.”
Freyre said Marie would not be dead if the state had just followed the judge’s order or if she’d been allowed to ride in the ambulance.
“I should be able to have my daughter home with me,” she said. “It's that simple.”
Cutbacks in care
For families that do have in-home nursing care for their medically fragile children, there have been drastic cuts. Sue Root's daughter Amy is quadriplegic and suffers from potentially life-threatening seizures that require immediate medical attention. They strike unpredictably, day or night — sometimes as many as 50 times a day. She also breathes through a tube in her throat that requires constant monitoring. It can become clogged, cutting off her oxygen supply.
“She can't walk. She can't talk. She can't eat. She can't itch her nose. She can't do anything for herself at all,” her mother said. “So she needs 24/7 care.”
Four years ago, Amy, then 8, was riding her scooter when she was hit by an underinsured driver and suffered massive head trauma. Root said the hospital told her a pediatric nursing home was the best place for Amy. But Root wanted her at home, and doctors agreed. Florida initially provided 24-hour nursing.
“I got a letter one day in the mail and it said the hours were being reduced,” she said. “They said there was a parental responsibility to take care of your own child.”
Amy’s nursing hours were cut from 24 hours a day to 16 and then 12, leaving Root to care for her the other 12 hours, seven days a week.
“The ultimate goal was for the parent to be responsible,” she said. “Entirely responsible with no help. I believe that was the goal.”
According to paperwork Root provided, the nonprofit agency Florida uses to administer claims, eQHealth Solutions, said nursing care was not allowed "for the convenience" of the parent.
“I shouldn't have to be begging for services or jumping through 50 million hoops to get these people to respond,” Root said. “I mean, I’m sorry this situation happened. Nobody is sorrier than we are. And we live with it every day of our life.”
What’s next for the kids?
Elizabeth Dudek, head of the state agency that oversees medically fragile children, Agency for Health Care Assistance, declined through a spokesperson to speak with “America Tonight,” citing pending litigation.
In testimony before the state Senate, Dudek insisted it is parents, not the state, who decide what the best care should be for their children.
“It is the parent or guardian who authorizes the location of service delivery, and it is our goal to ensure that children receive the medically necessary services they need in the most homelike setting,” she testified.
But the parents interviewed by “America Tonight” said they have to fight Florida every step of the way to keep their children at home, and that only the threat of legal action has brought any results. Root once again has 24-hour nursing care for her daughter — something she believes happened only because of the suit. Her paperwork with eQHealth Solutions notes that she and her daughter are members of the class action suit, and emphasizes with asterisks that the nursing hours are not to be cut.
Sue Root
Mother of Amy Root
“They don't care,” Root said. “If they cared, it wouldn't be an ongoing battle. We wouldn't have to fight continuously. Other places, other states, they're able to manage these situations so much better than Florida, and I’m like, ‘Why can't Florida get it together?’”
She added: “They would rather see my daughter — truthfully — die and quit being a problem to them. I think they have no heart.”
Once Deontae Shuler’s family got a lawyer, things changed for him, too. He moved from Kidz Korner to Broward Children's Center, a nonprofit "step-down" facility designed to prepare kids to move home. But his home in Orlando is more than four hours away, so visits by his mother and grandmother are special occasions.
“Deontae is the light of my life,” grandmother Gheri Shuler said. “He's a beautiful soul. When I see him, I go into joy mode. That's how I feel. I love him to death.”
And Deontae is making progress. He now rides the bus to school every day and takes part in activities, and his therapists are helping him with life skills. Asked where he wants to live, Deontae didn’t hesitate: “At home!”
Editing by Dave Gustafson, Claire Gordon and Timothy Bella
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