“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.”