Paralyzed patients in Florida fear losing health care at home

A transfer to managed care is worrying Floridians aided by a state program, who fear they'll be forced into nursing homes.

Published July 24 2017
Updated July 24 2017

TAMPA — After a 1999 car crash left Albert Hort paralyzed, he lived for a while in a nursing home.

He tells of substandard care, of the time he "almost bled to death'' because of a nurse's error. He can't forget the gloom of the place, of seeing deceased residents rolled out the back door.

"It's a fine place to go if you want to wait to die,'' said Hort, 54, of Tarpon Springs. "I want to live, and I've proven that over the last 18 years.''

Hort is one of about 500 Floridians with brain or spinal cord injuries who fear that a change in Florida health care law will force them out of their own homes and into nursing homes. That change — dropping a Medicaid waiver program and putting patients who were using it on managed care — also affects cystic fibrosis and AIDS patients who receive medical care at home.

"There will be no loss in services,'' said Shelisha Coleman, a spokeswoman for the Agency for Health Care Administration, the state agency that oversees the Medicaid program. She followed up with an email that said, "we guarantee that recipients will not be placed in nursing homes as a result of this change.''

Some patients are skeptical, fearing the worst. For many, the change in the law came without warning. It was passed by the Legislature in May and signed by Gov. Rick Scott on June 16.

"We haven't gotten any heads-up about it. It's been very secretive,'' said Sandra Adams, whose quadriplegic son is living in his home in Valrico.

Hort fears even a small reduction from the eight hours a day an aide comes to his apartment to help get him out of bed, bathe, dress and eat.

He broke his neck and shattered his spine on a rainy August day 18 years ago when he swerved to avoid a cat in the road and crashed into a tree and a wall.

Hort has the use of his arms, but not his hands. Having an aide means he can sit up in a wheelchair, go outside for fresh air and follow his beloved Oakland Raiders on the NFL Network. So devoted is he that his refrigerator is painted the team's colors, silver and black. Last year, he and his aide, Michael Todd, saw his team beat the Tampa Bay Buccaneers at Raymond James Stadium.

"If I went back to a nursing home, that would kill me,'' he said.

For Michael Welch, 47, who was paralyzed in a diving accident in 1984, the home-care program means the difference between being confined to bed and living a full life, he said.

He has been living in his own Palm Harbor condo for 13 years. He drives his own van. He earned a college degree and works as a furniture designer.

Welch's aide is there four hours in the morning to get him up and ready for the day and four hours in the evening to get him ready for bed.

"Once I'm up, I'm pretty self-sufficient,'' he said. "If I'm not out of bed, I'm literally stuck. I depend on somebody to get me out of bed.''

The Brain and Spinal Cord Injury Program paid the home-care costs for Hort, Welch and others through money from traffic citations, temporary license tags, motorcycle speciality plates and general state revenue. The state pays 40 percent of the costs and the federal government pays 60 percent.

Under the new law, all patients are expected to be transferred to managed care by Jan. 1, 2018, when the state will seek to abolish the program.

Money for the Brain and Spinal Cord Injury Program has been running low for years, said Thomas DeLilla of Riverview, who was the bureau chief for the program until he retired three years ago. He said the program did not have the means to take on new patients.

Generally, it costs less — sometimes a lot less — to care for these patients in their own homes rather than in nursing homes, according to AARP, which came out against the change in the law.

That is true in many cases, but not all, said DeLilla, himself paralyzed from a diving accident in 1972. He figures that while the managed care overseers will look for ways to cut costs, "I don't see the agency putting people back in nursing homes.''

Contact Philip Morgan at (813) 226-3435 or