Carol Marbin Miller and Toluse Olorunnipa
In a new and even harsher indictment of Florida’s treatment of severely disabled children, federal civil rights lawyers have issued a comprehensive blueprint for overhauling the state’s system of care for frail youngsters.
The 17-page “settlement proposal” by the U.S. Justice Department demands the state stop slicing in-home nursing services for frail youngsters, stop ignoring the requests of family doctors who treat disabled children and stop sending hundreds of children to geriatric nursing homes -- where they often spend their childhoods isolated from families and peers.
On the same day The Miami Herald obtained the “confidential” settlement proposal, the heads of three state agencies held a news conference in Tallahassee to defend the housing of hundreds of disabled children in nursing homes and to tout a newly minted program that matches medically complex children with specialized caseworkers.
“I can tell you that what I found was way better than I even thought I would find,” Agency for Health Care Administration Secretary Liz Dudek said Thursday, a day after she toured two nursing homes in Miami Gardens and Plantation. “I have to wonder what the DOJ was looking at when they went through there and I would invite any of you to go to any of those facilities, because I certainly did not see what they were seeing.”
The Miami Herald asked to join several Department of Children & Families administrators, including Secretary David Wilkins, on a tour of the most-troubled nursing home last month -- but was rebuffed.
The home, Golden Glades Nursing and Rehabilitation in Miami Gardens, is where two severely disabled children died in recent years -- one of them, 14-year-old Marie Freyre, perished after caregivers failed to give her life-saving anti-seizure drugs.
Federal regulators fined the home $300,000 for the girl’s death.
“We were quite pleased with what was going on there,” Dudek said of Golden Glades and the two other homes she visited Wednesday. “One place had clouds in the sky and they had personalized activities; their rooms were very much personalized. Children had buddies who were there. They went out to school in all the cases where they could or were in in-home school,” Dudek said of the six homes in the state that house youngsters.
Dudek and the other agency heads called the news conference to offer details of a new program -- nnounced last month -- that offers “enhanced care” coordinators, or caseworkers, for every medically fragile child whose care is paid for by Medicaid, the joint state and federal insurance program for the needy. The Enhanced Care Coordination program will enlist at least 28 nurse care managers throughout the state to work with families of disabled children and the nursing homes where they are being treated.
“The program is designed to help empower parents, to help them and to educate them and to help them personalize the experience that they have,” Dudek said, adding that the coordinators will be able to help some children return home from institutions.
Dudek extended an olive branch to the Justice Department, saying AHCA’s intent was “to work with the federal government.” But she also said the state was eager to convince the DOJ that Florida is breaking no laws by housing so many children in institutions.
“Maybe we need to go back into the facilities with them and see if they still have the concerns that they allege,” she said. “It’s been very, very difficult, because they’ve given us no specifics.”
The controversy began last September when the Justice Department sent Florida a 22-page letter accusing the state of systematically dumping frail children in geriatric nursing homes, where many of them receive little education or stimulation.
More than 220 children are in such homes, the DOJ wrote, because Florida Medicaid has made a policy of cutting in-home nursing care and other services to families, making it almost impossible for them to keep their children safely at home.
The Justice Department has threatened to sue the state, claiming it is violating the civil rights of severely disabled children.
While praising the nursing homes, Dudek acknowledged that a handful of the youngsters -- maybe two or three at each of the six nursing homes that accept children in Florida -- could return home for care, a position that is greatly at odds with the demands of the Justice Department.
The proposed settlement, apparently dated Dec. 14, is based, it says, “on the principle that all children should have the opportunity to grow up with a family, and in a setting that fosters their development to the fullest extent possible.”
Under the proposal, Florida “must promptly develop and implement effective measures to end and prevent unnecessary institutionalization of children with disabilities, and to provide adequate and appropriate services” in community settings for parents who wish to raise their disabled children at home.
The proposal says Florida must:
• Stop insisting that parents, siblings and grandparents be required to provide care that commonly falls upon skilled nurses, such as suctioning breathing tubes and overseeing ventilators. The Miami Herald has reported that eQHealth Solutions, a private company under contract with AHCA to review in-home nursing prescriptions, has told parents to have, in some cases, teenage siblings provide nursing care. Such extended family members “may not be compelled” to do the work of professional nurses, the DOJ wrote.
• Rein in the activities of eQHealth, which has been accused of arbitrarily denying nursing care to families with severely disabled children. The company boasted in its annual report that it saved the state $44.8 million by reducing or denying nursing and other caregiving claims from parents trying to care for their children at home, and its associate medical director acknowledged under questioning that he never saw, examined, read the medical files or sought the records of a woefully disabled girl whose care package he reduced.
• Consult with children’s primary doctors before cutting services for them, and provide the treating pediatricians justification “through evidence documented by the state” why their requests for care were being denied. The state also must certify that cuts to care for disabled children won’t result in the child being forced into a nursing home.
• Stop cutting in-home nursing care when neither the child’s condition nor the parent’s ability to provide care has improved.
©2013 The Miami Herald