Volusia County family struggles to stay together, files lawsuit
Updated On: Nov 06 2013 03:10:50 PM EST
It can happen in an instant. A healthy child in a typical family suffers an injury that turns all their lives upside down.
It happened to a Volusia County family more than three years ago, and their struggle since has helped fuel a federal lawsuit against the state of Florida.
The Department of Justice claims Florida is showing "deliberate indifference to severely disabled children." Essentially, the claim is Florida is forcing them into nursing homes by, in part, making home health care harder to get.
Just before Amy Root's ninth birthday in January 2010, she was hit by a pickup truck, causing a catastrophic brain injury.
"I asked my son where she was and he just started screaming and pointing and she was across the street in a ditch," said Amy's mother, Sue Root. "I ran over and I didn't see vehicles, I didn't see anything, I just saw my child lying in a ditch."
Root told Local 6 Amy's prognosis was bleak, but despite the odds, she survived. Amy came home after more than three months in pediatric intensive care.
Now, Amy is 12 years old. Besides her traumatic brain injury, Amy has a shunt, a tracheostomy, a feeding tube, and a rare seizure disorder. She's a quadriplegic, has poor vision and is non-verbal. In short, she is in need of round-the-clock care by a skilled nurse.
That's where Root said her fight began.
Medically fragile children, like Amy, are eligible under Medicaid for in-home nursing care, or to be placed in a nursing home pediatric ward. If those services can conceivably be provided in a home setting, and the parents elect for that setting, the state is required by law to provide them. If parents prefer children to be in a nursing home, then that is when that option is supposed to come into play.
But Sue Root said it has been a real struggle to get in-home nursing hours approved for Amy and time after time, her state-provided caseworkers have recommended sending Amy to a nursing home. Despite being certified by all of her doctors as requiring in-home, medically necessary nursing services 24 hours a day, her nursing hours have been cut several times over the years.
Currently, she is certified for 24 hours, but there are often no nurses available to come to the house – a shortage caused by low reimbursement rates, Root said.
While caring for Amy by herself is at times difficult, Root said putting Amy in a nursing home is not an option.
"She doesn't have the life we imagined, but she still has her life, and we are grateful for that," she said. "I love my daughter and I want her to be at home with us, she needs to be with her family, this is where she belongs."
The lawsuit against the state of Florida filed by the Department of Justice seems to agree. It says the state is "deliberately indifferent" to Amy and other children in her situation, by refusing to increase pay for in-home health care, creating a shortage of willing nurses. As a result, the suit alleges, the state is effectively forcing the children into nursing homes-- which is illegal.
Why would they want to put people like Amy into an institution?
Our investigation revealed it appears to be much more cost effective for children to end up in nursing homes. In fact, nursing homes can get up to $550 Medicaid dollars a day for caring for medically fragile children, while 24-hour home health care costs up to $700 a day. They also get a higher reimbursement for children than for adults -- in some cases, double the amount.
Governor Rick Scott this year vetoed a 10 percent increase for in-home health care funding, what would have been the first raise in rates in 26 years.
But the Agency for Healthcare Administration claimed in a statement: "No funds have been cut for in-home services and each child is individually assessed on the amount and scope of care they receive. Medically necessary care is an entitlement, thus every service is required to be paid for regardless of the estimated budget."
A spokeswoman for AHCA said the real reason in-home nursing services are denied is because in many cases, they aren't medically necessary, and that parents need to do more to care for their children.
Root said that is unfair, that no parent can do everything, especially with other children in the home. She says she will keep fighting for the care Amy requires and deserves, especially because it is medically necessary in her case.
"We have a right to live our lives and not be constantly having to battle for everything for Amy," Sue said. "She has the right to get what she needs and she deserves it. It makes me sad, it makes me cry."
She said no parent should be forced to give up, leaving a nursing home as the only option.
"You shouldn't have to give up hope, ever. There's enough that we have to deal with and enough obstacles that we have to overcome," Root said. "I don't think that we should have to give up hope on our children and I think they deserve to be with families. That's a family choice, I understand that... and everyone has to make the decision that's best for them."
A spokeswoman for AHCA told Local 6 said to its knowledge, none of the approximately 180 children in a nursing home is there against their parents’ wishes.
But Local 6 is aware of one family who claims that is not true. Watch Local 6 News at 7 p.m. on Wednesday to hear that family's story.