Among children younger than 3, the death rate over four years for children in institutions is 41.2 percent, compared with less than 10 percent for children cared for at home — meaning children in nursing homes are three times more likely to perish, the records say.
This is despite the fact that disabled and medically fragile children living at home often spend several hours each day with parents, siblings and grandparents who are required to provide sometimes complex medical care.
“There is no question at all that children do better in their homes,” said Dr. Daniel Armstrong, the associate chairman of pediatrics at the University of Miami, and director of the Mailman Center for Child Development. “There is mounting and overwhelming evidence that children fare better in supported homes and in community settings, rather than institutions.”
Without doubt, Marie Freyre was a fragile, sickly child. Born with cerebral palsy and fluid surrounding her brain, Marie had a shunt in her skull to drain the fluid and suffered from life-threatening seizures. One of her hips was permanently displaced, causing sometimes excruciating pain. Marie could smile, though she could not speak. Her mother learned to interpret Marie’s expressions and vocalizations in lieu of language.
Doris Freyre — who worked at a family store in Puerto Rico before becoming disabled herself— cared for her daughter well for 14 years, and Marie had suffered no seizures in recent years, records show. “When Doris was first informed that her only child could be born with significant disabilities, she did not decide to abort this child,” said the family’s Tampa lawyer, Peter Brudny. “Doris spent every day of 14 years of her life giving everything she had to Marie, guaranteeing that Marie lived as healthy and wonderful a life as God allowed her.”
But in March 2011, one of the family’s in-home nurses reported several concerns about Doris Freyre’s parenting of Marie to the state Department of Children & Families, setting in motion a disastrous chain of events. Hillsborough Circuit Judge Vivian Corvo began a hearing on the case on March 30, 2011 by praising Freyre.
“You are to be congratulated for caring for your daughter alone for 14 years. This is something that has to have been very, very difficult for you. As a mother,” she added, “I was moved by how hard you’ve worked to take care of your daughter.”
Corvo, who was presiding over child welfare cases in Tampa, wanted to help Freyre — not punish her. The greatest challenge was Freyre’s own health: Freyre suffers from six herniated discs, as well as carpal tunnel syndrome in her wrists.
“The doctor told me to do surgery,” Freyre said in court. “I told him no, because I have to take care of my daughter.”
Freyre had asked the state Agency for Health Care Administration to provide her with 24-hour nursing aides, and her Tampa pediatrician wrote a prescription for the hours. As it stood, Freyre had a gap between midnight and 7a.m. where she needed help to reposition Marie and change her diapers. “It’s not easy,” Freyre told the judge. “I’m human.”
But AHCA administrators refused to pay for the additional hours.Corvo wanted to know why. “This is a non-verbal child, with all of these issues,” the judge said. “Why would this mother not qualify for 24-hour care?”