FORT LAUDERDALE, Fla. (AP) — More than 3,300 children with disabilities are at risk of being pushed into adult nursing homes because the state is slashing nursing and other services that would otherwise keep them at home with their families, according to a lawsuit filed against state health officials.
The lawsuit mirrors a letter sent this week by federal officials to Florida Attorney General Pam Bondi alleging the state is violating federal law by allowing more than 200 children with disabilities and even babies to be kept in nursing homes, often for years.
The suit and federal regulators say children languish in facilities, sharing common areas with elderly patients and having few interactions with others, rarely leaving the nursing homes or going outside. After visiting children in six nursing homes, investigators noted the children are not exposed to social, educational and recreational activities that are critical to child development. Educational opportunities are limited to as little as 45 minutes a day, according to a detailed letter sent Tuesday by U.S. Department of Justice officials.
“These kids who are institutionalized in geriatric nursing homes are receiving less services than kids in prison,” said Paolo Annino, a law professor at Florida State University and one of the attorneys working on the lawsuit filed against the state earlier this year in Miami federal court.
Investigators also said Florida is violating the federal Americans with Disabilities Act and is infringing on the children’s civil rights by segregating and isolating them. The average length of stay is three years, according to the letter.
Once they do get to the facility, many stay for years, some literally grow up in a nursing home, according to the letter. One nursing home staffer told investigators “once we get the children, very few of them go home.”
The letter gives the state 10 days to respond. If the state does not comply voluntarily, then the U.S. Attorney General may initiate a lawsuit under the federal disability act.
Florida’s Agency for Health Care Administration said in a statement late Friday that the letter resulted in “unfounded and inaccurate allegations,” stressing it does not limit medically necessary home health services.
“The decision of where a child receives care is up to the parents, in conjunction with the child’s doctor. The agency will never interfere with a family’s choice for the location of their child’s care. The agency uses a professional, rigorous, federally-approved, quality control system to ensure every family receives the appropriate level of care for their child,” according to the statement.
While the suit and federal regulators claimed that more than 20 percent of the children in nursing homes were wards of the state, officials with the Department of Children & Families disputed that.
“All the kids we found were desperately ill or severely disabled children in special pediatric facilities only and not in adult facilities,” according to a statement.
But parents say they are desperately fighting to get services to keep their children at home.
The waiting list for services at home or in the community has jumped from 14,629 in 2005 to more than 21,000 in 2012, with more than half waiting longer than five years. Currently, state policy does not give priority on the waiting list to children in nursing homes, federal officials said.
Despite the lengthy wait, the number of children actually enrolled in these programs has decreased by several thousand over the last several years. That is “resulting in a growing list of children waiting years for services and having access to a waiver slot only once they have literally deteriorated to the point of crisis,” according to the letter.
At the same time, the state turned down nearly $40 million in federal dollars for a program that transitions people from nursing homes back into the community. The state has also been paying community-based providers less, reducing payments by 15 percent last year because of legislative budget cuts, the letter stated.
Yet the state implemented policies that expanded nursing home care, by offering facilities a $500 enhanced daily rate for caring for children, which is more than double than what the state pays for adults, according to the letter.
The state’s goal “is to reduce the need for private duty nursing and to put most of the burden on the parents,” said plaintiffs’ attorney Matthew Dietz, who noted many of the children require ventilators, feeding tubes and other complicated machinery. “To expect any parent to render life-sustaining care to a child is awful.”
Pamela DeCambra said that nearly every six months, the state denied her request to continue providing 24-hour at-home nursing care for her 15-year-old daughter, Maria. The teen suffers from cerebral palsy, has severe seizures and doesn’t walk or talk. Her saliva often pools in her throat, making it difficult to breathe, requiring a nurse to suction her lungs and administer oxygen. Maria, who is on a feeding tube and other machines, communicates with her eyes and expressions. She loves her cat, watching TV and spending time with her brother, her mother said.
DeCambra, a 56-year-old single mom who manages a law office in Tallahassee, said the state frequently denies 24-hour nursing care, approving 12-hour time periods, alleging that she can take care of Maria for part of the time. She has appealed every denial and won, but says it’s getting more difficult.
“She’ll never be placed in an institution as long as I have breath in my body, but it’s fast becoming more and more difficult for me to fight this battle because I’m fighting a monster that just won’t back down,” she said.
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