We call them "medically fragile'' children, but labels don't begin to convey the help they need to survive.
Josiah Conway, 9, sings karaoke and can zoom through an iPhone, but dozens of complications might close his airway at any moment. He stopped breathing earlier this month when medication with strawberry flavoring triggered one of many allergies.
Megan Garrett, 6, wastes away from a degenerative cell disease, has daily seizures and never leaves her bed. She smiles at her mother's touch, but if her finger happens to land in her mouth during a spasm, she will bite down on it and scream in pain, with no idea why.
These could be anyone's children, whether from genetic defect or too many minutes at the bottom of a swimming pool. And with nurses, machines and medicines for one child costing as much as $200,000 a year, lawmakers decided that taxpayers should often help pick up the tab.
Now, however, Washington and Tallahassee are locked in a legal showdown over Florida's commitment.
In a letter this month, the U.S. Department of Justice accused the state of routinely reducing home care and steering too many kids into nursing homes. If Florida keeps this up, the letter said, the federal government may sue.
Florida is holding firm, saying that it provides all the care the law requires. If any child is underserved, the state says, let us know and we will fix it.
Meanwhile, frazzled parents just want to get through another day.
Megan "knows she is loved and she loves us,'' Temple Terrace resident Terri Garrett said. "And that makes a huge difference in her will to be here.''
Out of a nursing home
Andi Cali, 6, lost much of his brain function as an infant when he nearly drowned. After his family moved to Spring Hill in 2009, Medicaid paid to keep him in Lakeshore Villas in north Tampa, one of six Florida nursing homes licensed to take in children.
It didn't come cheaply. Like Andi, many of the children are kept alive by feeding tubes and breathing machines. The state requires twice the skilled staff for children as for adults and will pay roughly $200,000 a year, more than double the adult rate.
For three years, Zurale Cali, now 39, would drop her two older children off at school and drive an hour to Tampa to spend the day talking to Andi, massaging his limbs and wheeling him into the garden.
She asked for a nurse at home, but the company that manages Medicaid's funds offered only eight hours a day, she said. That might let her sleep at night without worrying that Andi would choke to death from reflux. But by day, she would have to work the machines herself.
Cali is a stay-at-home mom; her husband works in construction.
The Americans With Disabilities Act requires that people like Andi be treated outside institutions if possible.
So Cali sued and won.
Three months ago, she brought her son home with 24-hour nursing care.
Andi now goes out in a wheelchair, goes on outings with his older brothers and sometimes visits the swimming pool. He also seems more alert.
"He moves his eyes left and right following you,'' his mother said. "He can squeeze your finger and moves his hands more than he did. He smells everything. When he is sleeping and you touch his mouth with meat or egg, he wakes up.''
She wonders if he would be more advanced if she had him home from the beginning.
"I feeling like I am really starting over,'' she said. "I'm just trying to forget the last five years.''
Battling over bills
As of last week, only 221 medically fragile children were living in nursing homes, many of them foster children without parents to take them in.
A few thousand other children are living at home, with parents and the state jockeying once or twice a year over how much help Medicaid must provide.
At-home cost averages about $95,000 but can be much higher for the sickest.
Florida Medicaid pays agencies $23 to $29 an hour for licensed nurses. That labor plus equipment can make 24-hour care more costly than a nursing home.
So Medicaid pays a private contractor to review doctor-prescribed care plans to make sure they are "medically necessary" — including whether family members could double as nurses.
Parents and advocates say with almost every review, the state's contractor denies or reduces nursing hours it pays for. Parents adjust or embark on time-consuming administrative appeals.
"If they got 15 hours last month, they will get 14 hours this month,'' Florida State University law professor Paolo Annino said. "And the thing is with these families, these children don't get better. The justification is that the parents can do more.''
Annino's students have filed about 20 appeals for parents, winning some and negotiating settlements in others.
"These parents are at the end of their strings,'' he said. "A child is on a ventilator, and Medicaid wants to eliminate the nurse and have the parent run it. They are not technologically oriented. I have a hard time changing movies on a VCR. Imagine that your kid is suffocating and you are having to deal with his life support equipment.''
Figures provided by the Agency for Health Care Administration paint a less contentious picture.
About 4,500 plans were reviewed this year, with about a third resulting in fewer hours, the state said. After 365 of those parents appealed, the state prevailed almost half the time.
Plant City resident Josiah Conway had multiple physical complications from birth, including Down syndrome. He underwent 22 surgeries in nine years.
The main problem is keeping Josiah's airway open. He is allergic to so many antibiotics he can't use a ventilator or have a tracheotomy, said his mother, Leslie. Allergic reactions inflame his throat until it shuts. So far, he tolerates only 12 foods.
For a while after birth, the Conways had no help. They slept with Josiah on their chest, waking every five minutes or so to make sure he was still breathing.
"My husband lost a couple of jobs; we were so sleep deprived and calling 911 multiple times a week,'' Conway said. "I had migraines for a year and a half.''
With so much focus on keeping Josiah alive, two older children "lost their parents,'' she said. "They stopped going to church. People stopped coming to the house because he had an immune disorder and the house had to be totally germ free. The kids stopped being involved in Boy Scouts or Girl Scouts.''
Medicaid stepped in after a few years, but then the cuts began. Of the 12 review letters Conway found this week, 10 called for fewer nursing hours, she said. One 2010 review called for a total denial of benefits. She fell apart, crying uncontrollably, and checked herself into a mental hospital.
After the Conways joined a class action lawsuit last year, a judge banned further cuts until the suit is resolved.
Josiah now averages 18 hours of care a day, including a nurse who accompanies him to Robinson Elementary School. He's in the third grade.
Dueling sides
On Sept. 4, Assistant U.S. Attorney General Thomas Perez wrote to Florida Attorney General Pam Bondi, instructing the state to provide better care for medically fragile kids.
Too many are in nursing homes, segregated from society and receiving only 45 minutes of education a day, Perez said, citing visits from Justice Department officials.
The average nursing home stay was three years. Some children had lived there a decade.
Meanwhile, one program to keep kids at home had 20,000 families on a waiting list, he said.
Florida's lawyers disputed those findings Friday in a return letter to Perez.
The state "fully complies with all laws and regulations,'' the letter said. If Washington would share its interviews with families, "we believe the state can clarify any misinformation.''
In Temple Terrace, Terri Garrett dreads her next review and worries Megan's hours will be reduced.
She still bristles at a reviewer's question a few years ago: Haven't you adjusted yet?
"I've adjusted to the fact that my daughter is going to die,'' Garrett said. "I've adjusted that my life has changed all around and my children's lives too.
"I thought if you needed help, it wasn't going to be a bunch of red tape and ropes and fighting.''
