MIAMI — When Anubis Day was 5 months old, child welfare authorities say, his father “swung” him by his legs and shook him violently. Anubis was left blind, seizure-prone and dependent on a ventilator to breathe. From then on his world would mostly consist of a room in a nursing home.
Last fall, under intense pressure from the U.S. Justice Department to free children like Anubis from institutions, state health administrators called the boy’s mother. The state, she was told, was willing to provide in-home nursing care and other services if she wanted to bring Anubis home and raise him herself.
Her answer? The mother “does not want us to ever, ever call her again about her child,” a state health employee wrote following a Sept. 17 conversation.
Anubis and scores of other Florida children are at the center of a bitter fight over the state’s treatment of severely disabled and medically complex children.
Florida’s Agency for Health Care Administration insists that children like Anubis are getting the best care available — and in the setting their parents want. The Justice Department says the kids would be better served at home or in community-based care, not in geriatric nursing homes — but that the state has squeezed funding for in-home care so severely that parents have no choice but to institutionalize their children.
Nursing homes don’t mind, because the state, while cutting back on in-home care, pays more than $500 a day to the institutions for each child.
What do parents want? AHCA insists it reached out to the parents of all the roughly 230 children in nursing homes and that the overwhelming majority declined an offer to help move their offspring back home. But AHCA’s own records suggest a large number have effectively abandoned their kids, seldom, if ever, visiting — many did not call the agency back — and are content to allow the state to call the shots.
Is that what’s best for the children? Should an independent arbiter be assigned to look after their interests?
A further complication: Many of the children, like Anubis, are where they are because they were shaken or abused by the very parents who now want them to remain there.
‘UNGODLY CRUEL AND EXPENSIVE’
Richard Gelles, dean of the School of Social Policy and Practice at the University of Pennsylvania, as well as chairman of child welfare at the school, called the institutionalization of medically complex children “ungodly cruel and ungodly expensive,” and added that the parents of such children still have a responsibility to oversee their youngsters’ care, and maintain a relationship.
Of course, there may be a host of reasons for a parent’s failure to maintain contact with a disabled child: no car, lack of money for transportation to sometimes-distant nursing homes, demands raised by other children. But the child welfare system is not about affixing blame, experts say. It’s about protecting children.
One “parent” — the state’s foster care agency — has taken action. The Department of Children & Families, which bore parental responsibility for more than 30 severely disabled or frail foster children when the controversy began, has in recent months relocated nearly half of them from nursing homes into specialized foster homes for medically fragile children, where they are integrated into their communities.
State health administrators have been on the defensive since last fall, when the Justice Department’s civil rights division accused the state of violating the landmark Americans with Disabilities Act by cutting in-home care so drastically.
The legal guardian for one 10-year-old — who is non-verbal, suffers from convulsions and is fed through a tube — told AHCA the family “could not get sufficient” in-home nursing hours to care for the girl, and was forced eight years ago to place her in a nursing home. Records say the girl’s aunt “expressed frustration” over the family’s dealings with the state.
The mother of a 17-year-old, who suffered a brain injury, told the state she “would have liked to care for the child in the home from 2010 when [the child was] discharged from the hospital,” but the state would offer eight hours each day of nursing care. The boy’s mom “visits daily,” records say.
Last month, Matthew Dietz, a Miami civil rights lawyer who is challenging the state’s institutionalization of severely disabled children, filed hundreds of pages of AHCA records in court detailing the conditions of children who are growing up in nursing homes.
Though the youngsters are identified only by their initials, the records offer a wealth of information about them, including specific accounts of the state’s efforts to contact their parents or guardians.
Included in the records are details involving:
—T.C., who, like Anubis, was shaken nearly to death in infancy, and is now paralyzed in both his arms and legs, is subject to frequent and severe seizures, is blind and unable to speak.
“No visits by Mom or family,” staff at his Tampa Bay nursing home wrote in a report.
—K.I., a 7-year-old girl who has a heart condition that results in oxygen deprivation. K.I. cannot breathe or process food independently, and is intellectually disabled. AHCA tried seven times to reach K.I.’s parents; the last phone number had been disconnected, and no new number was found.
“Family does not visit,” the nursing home wrote.
K.B., a 12-year-old boy with cerebral palsy who cannot speak and is nourished with a feeding tube. “The staff was unable to reach the mother of the child, and there is no current contact information for either parent,” records say.
—M.L.C., a 13-year-old girl with cerebral palsy and spastic quadriplegia. M.L.C. cannot eat or breathe on her own and cannot speak. Health administrators called her aunt, who is the girl’s guardian, “more than 10 times without success,” records say.
—A.E., a 4-year-old girl with a brain disorder who is fed by tube and suffers from seizures. Records say the girl’s family “could be eligible to receive” full-time nursing care to raise the little girl at home. But A.E.’s parents left no contact number at the nursing home.
—J.J., 13, who suffered a catastrophic brain infection that left him with a host of disabling medical conditions, including spastic quadriplegia, recurring seizures and an inability to breathe independently. Records say he also suffers from chronic depression, for which he is given Prozac. J.J. “is very sociable,” likes “being around other people” and “does not like being in his room.” But when health administrators called his parents to alert them to alternatives to J.J.’s nursing home, their calls went unanswered.
DEFINING WHAT ABANDONMENT IS
Theresa Flury, a child welfare lawyer who for two years ran the statewide guardian-ad-litem program, which helps children navigate the court system, said state child protection administrators would be “raising holy Cain” if the parents of healthy children had ceased all contact with their kids. Youngsters like J.J. with severe disabilities are effectively abandoned, she added, “because nobody speaks for these children, because, unfortunately, they can’t cry out for themselves.”
“I’m sure all of them have depression,” added Flury, who now heads the Boys and Girls Club of the Big Bend. “Medication will not help. What they need is a family.”
Under Florida law, DCF can seek supervision or custody of children who have been abused, neglected or abandoned by their parents. Mothers and fathers who fail to “evince a settled intent to parent” may be accused of abandoning their child under state statute.
Under the law, “abandonment” occurs when a parent “has made no significant contribution to the child’s care and maintenance or has failed to establish or maintain a substantial and positive relationship with the child, or both.”
Michelle Dahnke, a spokeswoman for the healthcare agency, said all state employees, as well as nursing home staff, are required to report suspicions of abandonment or neglect, but that agency records reviewed by The Miami Herald don’t “constitute reasonable cause.”
What’s more, a parent’s unwillingness to speak with healthcare workers “in relation to the difficult decision some parents of medically complex children must make as to whether their child is best served in a skilled nursing facility or in the parent’s home” should not be interpreted as abandonment, Dahnke said.
“The agency,” Dahnke added, “places high priority on the safety and protection of children. We believe anyone who suspects abandonment or neglect should report it to DCF.”
Gelles, the dean from the University of Pennsylvania, disagreed with Dahnke’s assessment, saying “it is abandonment” when a parent leaves a child in an institution and does not visit. He added that those parents “probably wouldn’t contest” a petition from child welfare authorities to declare such a child dependent on the state.
George Sheldon, who was DCF secretary under former Gov. Charlie Crist, and now is the U.S. Department of Health and Human Services’ assistant secretary for the Administration for Children and Families in Washington, concurred with Gelles, saying “on the face of it, I don’t see how it’s anything other than abandonment.”
The onus for reporting parents who abandon their children may well fall on the nursing homes themselves, said Andrea Moore, a Coral Springs lawyer and children’s advocate who has served on several child welfare panels and consults with DCF and some of its private foster care agencies. The homes, she added, have a disincentive to make such a call, because they’re paid so much money.
As DCF secretary, Sheldon developed a program to recruit “champions” for foster kids with severe disabilities or medical needs who would benefit from intensive advocacy. The effort arose when a disabled teen in need of a new liver was removed from a Gainesville hospital’s organ procurement list because doctors feared he could not sustain a new organ while in foster care. The boy was given a new liver at Jackson Health Systems after The Herald wrote about his plight. He’s now doing well.
Sheldon said children in institutions should be given advocates as well.
ANUBIS DAY WILL CRY NO MORE
Whatever becomes of the lawsuit by Dietz and the saber-rattling by the Justice Department — whether the state is forced to restore in-home care or appoint “champions” for institutionalized children — Anubis Day will not benefit.
The little boy from Pompano Beach who was shaken so violently and swung by his legs until both limbs fractured because he wouldn’t stop crying will cry no more.
He stopped breathing on Dec. 15. He was 3 years old.
His 41-year-old father, Paul Day, who had previously been charged with aggravated child abuse, now faces a murder charge.
His mother, who could not be reached by The Miami Herald, “denied knowledge of father mistreating victim,” the DCF report on Anubis’ injuries said.
He was seldom visited in the nursing home where he lived and died.
“I don’t know that there’s any rule about how often you should visit a child in a nursing home,” said Gwen Wurm, a University of Miami pediatrician who heads the medical foster care program for Jackson Health Systems. Wurm called the problem “a major loophole” that should be fixed, so that children do not grow up isolated in institutions.
“How sad for these kids,” she said.
©2013 The Miami Herald
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