- Eight of 10 AARP members in Florida want to age in their homes and communities, but Florida spends most of its money for long-term care on nursing homes.
- Only 14 percent of Medicaid long-term care funding in Florida is spent on home- and community-based care. The national average is 27 percent.
- State spending on long-term care needs has been flat while demand has sharply increased.
For the past decade, Debranne Lehman has done everything in her power to take care of her mother at home. When the family moved from Maryland to Florida in 2004, she slowly began losing that fight.
"We were amazed that people down here who had parents were saying, 'Oh, my mom's in a nursing home. My dad's in a nursing home,'" Lehman recalled. "And I thought, 'Doesn’t anyone [care for] anyone at home?'"
In Florida, if you can't care for yourself, don't have a relative close by to care for you or don't have a private long-term care policy, most roads lead to the nursing home.
Lehman, a 59-year-old freelance court reporter, has been bucking that trend, spending her own money with minimal state help. Her mother, Mary Whittam, 89, has suffered with progressive dementia since a 1999 stroke.
Shortly after moving to Orlando, Lehman found an adult day care service called Share the Care, where for $220 a week, she could drop her mother off five days a week while she and her husband worked.
But when a bladder infection left Whittam unable to walk earlier this year, the adult day care service was no longer an option. A full-time home-health aide was too expensive.
Lehman found a state-licensed assisted living facility in a private home. That will cost the family about $2,000 a month.
Many older people and their adult children don’t realize that neither traditional Medicare nor Medicaid pays for most assisted-living or adult day care. Of millions of older Floridians, only a few thousand get government help with home care services.
Nearly eight out of 10 AARP Florida members say they want to age in their homes or communities. But trails the national average in providing home- and community-based care, even though its over-65 population of 3.2 million is second only to California's.
A 2009 AARP analysis reported that only 14 percent of Medicaid long-term care funding in Florida is spent on home- and community-based care, compared with a national average of 27 percent. The rest goes to nursing homes.
Over the past decade, the state has frozen spending on some long-term care programs though needs have risen sharply. Since 1996, the number of beneficiaries in the state's Community Care for the Elderly program has shrunk from 41,990 to 15,376 even as the state's 65-plus population has swelled by more than 500,000.
Sparking further concern among older adults, the legislature this year considered a massive Medicaid overhaul plan that would move nursing homes and other health programs for low-income people away from the traditional fee-for-service structure to a managed care system. Although the plan failed, it is likely to resurface next year.
AARP advocates in have tried repeatedly to convince legislators that spending more money on home- and community-based programs that are cheaper than nursing homes can lead to overall savings for the state.
The average nursing home in costs about $74,500 a year, according to the state Agency for Health Care Administration. AARP Florida estimates the typical cost of home- or community-based care at less than $8,000 a year.
"We've been fighting this battle to get a rebalanced system for years and years and years," said Leslie Spencer, AARP associate state director for advocacy.
Meanwhile, Lehman has slowly had to let go of her role as her mother's direct caregiver. In Florida, 1.8 million family caregivers provide an estimated value of $19.2 billion a year in services.
Leaving her mother in the care of strangers is difficult for Lehman.
"You're so frustrated you just cry," she said.
Sean Holton is a freelance writer based in Orlando, Fla.
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