Why does Florida place disabled kids in nursing homes?

The letter from the U.S. Department of Justice is probably the best place to start.

It suggests in a simple, unadorned way how Florida has abandoned its most vulnerable citizens. Over the course of 22 dispassionate pages, it makes a point-by-point case of many of the state's shortcomings in caring for children with extreme medical conditions.

It highlights how Florida's apparent inclination to herd helpless kids into geriatric nursing homes is not only a violation of federal law, but also leads to the unnecessary ruin of families and can be an impediment to developmental progress.

Or here's another way of saying it:

"From my perspective, what they're doing is almost like a legalized genocide,'' said Leslie Conway of Plant City. "They look at my son and say, 'He's of no value or worth to us, therefore we're not going to spend a lot of time or money helping him.'

"Whether that's true or not, I honestly don't know. But that's how it feels to me.''

• • •

For far too long, this has been Florida's misbegotten tragedy.

Children with severe Down syndrome, or children in medically fragile situations, have been engaged in a one-sided fight with the state for the care they need.

Parents are made to appear before medical panels every six months to justify the need for nurses, medical supplies or life-saving prescriptions.

More and more, they say in-home nursing care is being eliminated. That forces parents to make a chilling decision: either quit their jobs and devote their entire lives to being amateur caregivers, or institutionalize their child.

Conway's son Josiah was born with Down syndrome and a faulty heart. Complications from heart surgery at 8 months old severely impacted airways in his throat, and he is in constant danger of asphyxiation. Frantic calls to 911 to report Josiah was unable to breathe soon became part of the family routine.

When her son was 7, Conway says, the state notified the family that his in-home care, which had gradually been cut, was going to be eliminated. Pleading her case before a review board, she produced documents from physicians detailing Josiah's very specific needs.

She said she was told her son's diagnosis was irrelevant.

The Conways sued, and now get 19 to 22 hours of nursing care a day. Still, they are up for review every six months to justify funds for his unchanging outlook.

"We should be giving parents the tools they need to take care of their child instead of ripping their families apart,'' said Matthew Dietz, a Miami civil rights attorney who has sued the state in a class action. "This really has to stop. The state has no justification for these policies, other than keeping the nursing home lobby happy.

"It will lead to death for some of these children and destruction for many of their families. It's a morally reprehensible policy.''

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The Justice Department was not quite as direct with its criticism, but its investigation of the state's support system reached similar conclusions.

In a letter last week to Florida Attorney General Pam Bondi, the Justice Department concluded the state was violating the Americans with Disabilities Act, and said policies were inadequate, haphazard and counterproductive.

The Justice Department says nursing facility care is inadequate, and the state's policies are putting more and more children at risk of being institutionalized.

Florida's Agency for Health Care Administration disputes the report's findings, and another state agency claims it found no instances of children in adult-only nursing homes.

The Justice Department has given the state until Friday to respond with a plan to correct Florida's systematic failure, or risk being sued by the federal government.

Far beyond these legal issues is a far more basic question: Why?

Why are so many parents accusing the state of steering children toward lifelong institutional care? What is the benefit of having a developmentally disabled child parked in front of a television in a nursing home with little therapy or social interaction?

Why begin a child's life in a home designed to be the end of the line?

The most common answer from critics is money.

Dietz says the cost of keeping a child in a nursing home is roughly $500 a day, which can be significantly less than providing nurses round the clock at home. Cynics have also suggested that nursing homes encouraged the practice to fill their empty beds while pocketing Medicaid funds.

Zurale Cali of Spring Hill used to make a two-hour round-trip to a nursing facility in Tampa every day to visit her son Andi, who was severely brain damaged after a water-related accident as an infant.

She spent years seeking approval for nursing care that would allow Andi to join his two older brothers at home. It was not until she sued that the state eventually provided in-home nursing.

"We're seeing a huge decline in social services in Florida, and we have been for some time,'' said Tampa lawyer Peter J. Brudny, who represents a mother whose daughter died shortly after being moved to an all-ages nursing facility.

"More and more children are being warehoused in these geriatric facilities, and it's a crime. They stay there and just linger in beds with no interaction, no toys, no opportunity to be around other children.''

In the three months since he has been home, Andi's need for an oxygen tank has lessened to almost nothing, and his mother says he is becoming more and more alert.

In a few days, Andi will turn 6 years old.

It will be the first birthday he has ever had at home.