NEW PORT RICHEY
Yellow and savory, the pureed pot roast and veggies that Janet Williams spoons into her husband's mouth is helping save Florida thousands of dollars a month. Mitchell Williams, laid low by congestive heart failure, stroke and prostate cancer, cannot walk, feed himself or talk intelligibly. His wife's hour-by-hour ministrations keep him out of a nursing home at taxpayers' expense. The state helps out — paying a young man from the neighborhood to lift Williams between bed and chair and to assume caregiving tasks a few times a week when Janet needs to leave the house. This creative, patchwork arrangement takes advantage of natural relationships among families and friends. And at $700 a month, it costs the state only about one-sixth of what a nursing home might charge. Now, Florida's $3 billion budget shortfall threatens to end it.
The Governor's Office has asked all agencies to plan for a 10 percent cutback. If money does become that scarce, the Department of Elder Affairs proposes to completely ax the Home Care for the Elderly program, which helps the Williamses and about 3,700 other Floridians get through the day.
This budget cut is by no means final. Gov. Charlie Crist and the Legislature could still dig up needed savings elsewhere. But seeing the Home Care program on the preliminary chopping block worries some advocates.
"It's the most cost-effective, wonderful program ever," said Margaret Lynn Duggar, a Tallahassee consultant who ran the state's aging agency in the 1980s. "We wondered if it really worked and when we looked at it, something like 90 percent of those clients never went into nursing homes. They died at home."
Janet Williams, 51, who once worked as a nursing home aide, said she is determined to keep her husband at home. Her frequent applications of lotion keep his 92-year-old skin remarkably smooth. She awakens two or three times a night to change his diaper. Her mega-decibel conversation penetrates his faulty hearing.
"I'm not bragging," she said, "but nobody can take care of him like I do."
Like all Home Care caregivers, she earns $106 a month, to spend however she sees fit. The program also pays junior college student Robert Clark $10 an hour to sit with Williams whenever Janet needs to shop, go to church, visit friends or just get away.
"My husband cannot be left alone. If nobody came in and gave me a break, I would be stuck here all the time," Janet said. "It makes me feel refreshed so I can come back and deal with it."
Other state programs also give "respite" breaks to caregivers, as well as home health aides, transportation and other services to keep frail elders in their homes.
Many of those programs, however, are financed through Medicaid, with the federal government allowing only a few specific services rendered by licensed, professional vendors.
Home Care, a purely state program, operates on a smaller budget but with greater flexibility. It can reimburse caregivers for anything that lightens their task — even down to fixing a broken refrigerator.
Caregivers can hire friends or family members to help out. These helpers often lack the experience of professionals, but might cost as little as $7.50 an hour, where agencies might charge three times as much.
A dent in expenses
Belleair Beach resident Helen LaRosa, 84, is bedridden with dementia, cancer and heart problems. Her 52-year-old daughter, Lee, figures she spends most of her waking hours feeding, bathing and changing her mother.
She's also part of a team. Georgann McConnell, a live-in friend, cooks, shops, cleans and helps with hands-on care when necessary.
Home Care for the Elderly covers $350 a month of Helen LaRosa's medical expenses — putting a dent in the cost of her prescriptions, diapers, lotions and nutrition drinks.
And when Lee LaRosa needs to get out of the house for a break or an appointment, McConnell earns $10 an hour as a respite caregiver.
"I don't know what I would do" without Home Care's help, Lee LaRosa said, wondering whether the Legislature will continue the program. "But come hell or high water, I will figure out some way to keep her at home."
St. Petersburg resident Alan Berger, 54, figures he and his longtime partner, William Levy, 61, are about to lose their house.
With hepatitis C and end-stage liver and renal disease, Levy needs nearly constant care. Berger can't provide that and work at the same time.
Having exhausted their savings, they live on Levy's $800-a-month disability check and food stamps. The house is for sale, and they haven't made a mortgage payment in six months.
Home Care's $200 payment "means one more month we can sneak by without having the water turned off or the power turned off," Berger said. "We have our fingers crossed that somebody buys (the house). Hopefully, we'll get enough money to buy a little trailer in a trailer park somewhere."
Such accounts of life on the edge are typical for Home Care for the Elderly clients.
They must meet Medicaid's criteria for nursing home care, which means they are too sick and too poor to support themselves at home.
Elder Affairs Secretary Doug Beach declined to comment on the proposed cut until Crist has finalized his budget.
But his department faces difficult choices. The state risks losing money if too many Home Care clients end up in nursing homes. But that's also true of other Elder Affairs Department programs that support people in their homes.
Most of the other programs are financed through Medicaid, where Washington more than matches the state's contribution. Cutting one state dollar from Medicaid programs costs clients more than $2 in services.
Janet Williams, determined to keep her husband at home, knows well the math of tough choices.
Their mobile home on a dirt road is paid for, as are the additions Mitchell Williams tacked on during better times. But food costs $500 a month and utilities $330. His Social Security check plus a tiny carpenter's union pension total $1,050.
"Today is the 18th of the month," she said last week. "I got $2 left in the bank."