“The state believes strongly that individuals, especially Florida’s most medically fragile children, deserve to be cared for in the least restrictive setting that can best serve their medical needs,” Dudek said in a statement Nov. 30. “Children can receive medically necessary services in their homes in unlimited amounts and duration, up to 24 hours per day, 7 days per week.”
In a news release Dec. 14, Dudek outlined new “safeguards” the agency was putting in place to prevent more frail children from ending up in institutions because the nursing hours of their caregivers had been cut. One provision: “to ensure that no reductions in home health services for children occur unless there is a change in the child’s medical/social circumstance, or parental ability to provide care.”
One Westchester father, who emailed Dudek directly, suggested the agency head is saying one thing to reporters, but doing something completely different. There is a wide chasm “between your description and the reality on the ground,” wrote Alex Perez, whose son was born with a disabling genetic disorder.
Perez and his wife, Jacqueline, are raising 13-year-old Christian at home, but the challenges of his severe developmental disabilities have become increasingly daunting. Though Christian’s medical condition has not improved, eQHealth reduced the boy’s caregiving allotment by six hours each day in the company’s most recent review — claiming the aides were not medically necessary. This, Perez wrote in his email, despite Dudek’s claim that nursing hours will not be cut if the child’s health needs remain the same.
“There is a better and more cost effective way that doesn’t create a combative atmosphere, one of hopelessness for the parents, one where eQHealth can run amok,” Perez wrote in his Dec. 17 email to Dudek, which was also copied to several state lawmakers.
Dudek agreed to send an eQHealth representative to visit the Perezes. But days later, the family’s appeal was denied.
Underlying state policy is the belief that virtually anybody — including other children — can be taught the skills of a professional nurse. Florida’s Medicaid Handbook, which articulates state policy, allows the state to decrease nursing hours for disabled children “as parents and caregivers are taught skills to care for their child.” Under the policy, caregivers can be teenage children and elderly grandparents — who are being asked to oversee ventilators, suction trachs and use feeding tubes.
Elizabeth Fauerbach of Countrywalk is one such parent. Her 18-year-old son, Tyler, was born with a terrible stew of medical conditions and disabilities, including cerebral palsy, developmental disabilities, chronic lung disease, reflux, blindness and a seizure disorder. Tyler is fed with a tube attached to his stomach; since 2006, he has breathed with a ventilator. His breathing tube requires frequent suctioning, which sometimes causes Tyler to gag and become “distressed,” Fauerbach wrote in a court declaration.
Fauerbach and her husband have raised Tyler at home his whole life. He goes to church with the family on Sundays, and enjoys listening to the congregation sing. “On Sunday afternoons we read together,” she wrote. “We have read all the Harry Potter books, The Chronicles of Narnia, The Girl with the Golden Compass,” as well as the books about a dragon named Saphira. The Fauerbachs take Tyler to the movies — he seems to especially enjoy films based on books his mom has read to him — and he sits in his wheelchair at the dinner table every night with his parents and sister.