Twice in the past year, state health administrators cut the number of hours caregivers assisted Alex Perez’s severely disabled son at his Westchester home. Both times, the child’s pediatrician was left wondering why the state had reduced the care he had prescribed for the boy.
On Monday, state Rep. Katie Edwards asked Perez if she had been “misled or misinformed” when state healthcare bosses told her that the company that reviews such prescriptions always speaks with family doctors to find a way to help parents.
“Yes,” Perez told Edwards at a town hall meeting in Sunrise for parents of disabled and medically fragile children Monday night.
Perez, whose 13-year-old son, Christian, suffers from cerebral palsy and failure to thrive, was one of a dozen parents and advocates who spoke to several lawmakers and other community leaders Monday night at the meeting called to address the needs of Florida children with severe disabilities and life-threatening medical conditions.
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As Perez looked on, Edwards, the meeting’s chairwoman, called a spokesman for the state Agency for Health Care Administration to the podium. AHCA legislative director Chris Chaney said it was common for the private company, eQHealth Solutions, to speak with family doctors to “reach a consensus” over the care for children like Christian.
“Not happening,” several parents shouted from the audience.
“You need to correct this,” Edwards said, speaking to Chaney.
Edwards, a Democrat from Sunrise who was recently elected to the House, called Monday’s meeting at the Sunrise Senior Center following several stories in The Miami Herald about the state’s cutting of in-home nursing care to medically fragile children, which has forced some parents to place their children in geriatric nursing homes. Edwards said she became aware of children like Christian while volunteering at, and raising money for, a Homestead daycare center for children with complex medical conditions.
“They keep finding new reasons to deny services,” Perez told the group about eQHealth, a private company under contract with the state at the center of the controversy. “It’s a very combative atmosphere.”
The plight of children with complex medical needs came to light last fall when civil-rights lawyers with the U.S. Justice Department accused the state of warehousing severely disabled children in geriatric nursing homes — where the youngsters often have little contact with the outside world, and can spend their entire childhood with no social or family interaction. Hundreds of children have landed in such homes, the Justice Department wrote, because state health administrators have dramatically cut in-home and other services to children whose parents care for them at home.
Edwards said it was partly the Legislature’s “fault” that disabled children were suffering from lack of care. For too long, she said, lawmakers avoided getting involved in the details of state health and social service agencies, allowing departments to write their own rules with little legislative guidance, and offering inadequate oversight over how the state’s “limited pool of resources” is spent.
If the state is favoring nursing homes by strangling the flow of dollars to families raising disabled children at home, though, Edwards said that should stop.
“It should be the parents’ choice, and not the choice of the state, where you take care of your child,” said Edwards, whose niece is disabled.
Seth Hyman, whose daughter Rebecca has a genetic disorder that causes 200 to 300 seizures each day, some of them life-threatening, has been placed on a waiting list for services along with about 22,000 other Floridians. Rebecca cannot walk or speak.
Hyman said he lost his business while caring for Rebecca, but still cannot qualify for Medicaid, the state and federal insurance program for the needy. “I can’t begin to tell you what life is like without these services,” Hyman told the half-dozen lawmakers. “It’s a living hell.”
“They will pay for care at a nursing home. But getting loving care at home, they won’t pay for that,” Hyman said. “There’s something wrong with that.”
Another parent, Vicki Ahern, said Medicaid bosses have made confounding decisions regarding her son, Keith, as well. Keith has muscular dystrophy, and Ahern has worked tirelessly to keep his muscles from atrophying. Doctors wanted the state to buy Keith, 17, a special tricycle so he could keep his legs moving, to slow the development of his disease. Medicaid refused to pay the $1,800 bill for the tricycle, but offered to spend $10,000 instead for a motorized wheelchair, Ahern said.
Irvin Rosenfeld, who works with Shake-a-Leg in Miami, which helps disabled children experience sailing and other outdoor activities, told lawmakers there were good reasons he didn’t favor housing frail children in nursing homes. Disabled children who live at home — some of them with breathing tubes and ventilators — are able to go sailing with his group. “Never once in my 18 years as a volunteer there have I seen a nursing home bring a child to Shake-a-Leg,” he said.
“Nursing homes are not an answer for children,” Rosenfeld said, to the applause of several in the audience.
One of the last speakers, children’s advocate Larry Forman, who operates two daycare centers for children with medical complexities, suggested Florida is headed back to an earlier era when states routinely warehoused children and adults in sterile, rural institutions, where they often lived their entire lives isolated from family and communities. “I want you to leave here as alarmed and as angry as I am,” he told lawmakers.
“You need to make a difference,” he added. “We need your help. These children are crying for your assistance.”