Orlando nursing home to close, leaving children in limbo

Family fights to bring medically fragile child home


ORLANDO, Fla. – An Orlando nursing home that once welcomed disabled children is now evicting them -- shutting down its children's wing.

Orlando Health and Rehabilitation Center will not comment on why it is shutting down its once-prized program, called Grandma's House.

But the shutdown comes as the state is being sued by the federal government for allegedly forcing families to put their children into nursing homes.

The lawsuit against the state filed by the Department of Justice says the state is "deliberately indifferent" to medically fragile children by refusing to increase pay for in-home health care, creating a shortage of willing nurses. The suit alleges that effectively forces children into nursing homes -- which is illegal.

The Florida Agency for Health Care Administration claims placing children in nursing homes is a last resort. It claims none of the approximately 180 children in nursing homes is there against the wishes of the child's parents.

But Local 6 found at least one family that says that's not true -- that they do want their daughter home.

Jessica, who is 15 years old, has cerebral palsy, a severe seizure disorder and other medical issues. She is in a wheelchair and her parents told us she has the mental capacity of a 6-month-old.

For three years, she has lived at the Orlando Health and Rehabilitation Center, a 420-bed nursing home that, until now, set aside 40 beds for children like Jessica in a wing called Grandma's House.

The facility has been fined previously – most recently in 2009 -- for the mistreatment of a child.

"Hygiene at the nursing home, simple things like brushing her teeth, brushing her hair were neglected," said Jessica's father. "The children at the nursing home were just left in the hallway sitting in their wheelchairs with no stimulus, whatsoever." (The family asked their real names not be used, as they fear retribution from a system that, they said, made it impossible for them to keep Jessica at home as they wanted.)

He said at one point, she was admitted to a local hospital where nurses expressed concern about misinformation on Jessica's charts, including a grossly incorrect weight, medication discrepancies, as well as hygiene issues.

"When you have to make that decision to put your child somewhere and you're a parent, you're supposed to take care of your child," said Jessica's mother. "You're not able to do that because the little bit of help you need they won't give you, but they'll offer you full time care in a facility. And you have to make that choice and you have to live with it."

That help would be in-home nursing care, funding for which would have increased by more than $9 million this year, until Governor Rick Scott vetoed that funding boost.

Asked if she felt forced to place her daughter in a nursing home, Jessica's mother said, "Yes, I did. I felt that we couldn't have the hours to take care of her in home, but that they would give us the hours for my daughter to be in a nursing home completely full-time, that doesn't make sense."

"If she's entitled to the care at the facility, the state calls it institutional Medicaid, anything they provide in the institution, they're supposed to provide it in her home, so she should be able to get every service provided in our home," she said.

Although both parents work, it's not as simple as just placing Jessica on their own insurance. Their health insurance would only cover some of her medical expenses, not the 24-hour care she requires. The other issue is that they both make too much money for Jessica to qualify for Medicaid right now.

Mary said if she knew Jessica's in-home skilled nursing care hours were approved, she and Bill would be willing to make a tough decision in order to provide for her, and have her home.

"If it means we can't work, then that's the choice that we will have to do, because we just need Medicaid to pick up the place where our insurance leaves off," she said.

Now, as the Justice Department sues Florida for allegedly illegally warehousing children like Jessica in nursing homes, things look worse.

"We received a call a little over a month ago saying that Grandma's House would be closing," Jessica's father said. "They advised me that the facility was closing due to the lawsuit that the Justice Department was bringing against the state of Florida. They said they didn't want to deal with the, basically the lawsuit, that led them to close the facility. I haven't been able to get any other information, the people I talked to at Orlando Health and Rehab, most of the people there don't know what's going on, they're just as much in the dark as we are."

Local 6 tried to ask the nursing home administrator why they are removing children, but after telling us that he would prefer to make a comment when he was better prepared, a home spokesman called to say there would be not comment. AHCA also declined to go on camera, but did say, again, it was unaware of any child in a nursing home contrary to the wishes of the family.

"That's not true," said Jessica's mother.

"That's not true at all," her father echoed.

"I wanted my daughter to come home and (the caseworker provided by AHCA) gave me no plan, she gave me no options," said the mother. "We don't want her there and I believe there's many other parents there that don't want their children there."

Local 6's investigation does show that there has been some improvement in the situation.

Fewer children are now in nursing homes than in prior years.

This year alone, AHCA officials said 31 children have been discharged from nursing homes to their families. However, as of early October, AHCA spokeswoman Michelle Dahnke told Local 6 there were still 181 children living in nursing homes, though she said that number does fluctuate.

There is some potential good news for Jessica. Her parents tell us because of the facility closure, she may actually be able to come home as soon as late November. They said they now have an advocate with the Agency for Persons with Disabilities who is helping them coordinate the move.

"We want to bring her home," Jessica's mother said. "We want our daughter home."

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