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.