Shirley Miller, an 85-year-old widow, has lived on the 10th floor of an aging rent-subsidized apartment building in Winter Park, Fla., for 21 years, close to her friends, church and doctors. Miller remains sharp and independent, but one health problem after another has left her unable to maintain her daily routine on her own.
So a year ago she applied for help with cleaning, meals and personal care from the state’s Medicaid and elder care programs. Though she qualifies for help, she was put on a waiting list.
Today Miller weighs barely 100 pounds. She eats only when friends bring her food. She cries because she cannot clean her home or even bathe herself properly.
And she has yet to receive any help from the state.
“I’m afraid now I’ll die before they get to me,” she says, in a voice just above a whisper.
Programs that help older Americans like Miller live independently in their own homes—and out of nursing homes—have not been keeping pace with the needs of people age 85 and older, the fastest-growing age group. Across the nation more than 300,000 individuals are already on Medicaid waiting lists for home or neighborhood services.
Now, shocking budget deficits produced by the deepening recession are forcing state lawmakers to freeze or even cut these lifelines for older residents. At least 46 states plus the District of Columbia face shortfalls this year or next; and an estimated $350 billion in state deficits loom over the next 30 months, according to the Center on Budget and Policy Priorities (CBPP), a Washington think tank.
“Every program, every bill and every policy issue will be affected by the economy,” William Pound, executive director of the National Conference of State Legislatures, wrote in a recent NCSL report on the budget outlook.
At least 22 states and the District of Columbia are cutting or proposing cuts to home and community services or are significantly increasing what low-income people must pay for them, according to the CBPP. In a recent national survey of state area offices on aging—which direct many such state programs—70 percent said they anticipate “severe” budget cuts.
Alabama, for instance, has ended homemaker services for more than 1,000 older adults. Rhode Island now charges low-income older residents more for adult day care. And the Florida legislature, grappling with deficits of more than $2.8 billion for 2009, lopped almost $2 million from the state’s Community Care for the Elderly program—which supplies home care, meals, adult day care and a host of other services—before Republican Gov. Charlie Crist vetoed the cut.
Such reductions around the nation could undo progress in shifting funding for long-term care away from nursing homes and into services that give people more choices for where to live. Some of these home services are fully funded by the states; others are part of Medicaid, the joint state and federal health care and long-term care program for low-income Americans. On average more than 21 percent of all state spending goes to Medicaid, which makes its programs a tempting target for budget cutters.
By law, state Medicaid programs are required to pay for nursing home care for those who qualify for help with long-term care, and the majority of long-term care dollars go to these facilities. But the federal government also gives states the option to develop services that help people who qualify for long-term care to remain in their own homes—a choice nine of 10 older Americans prefer over nursing homes, according to AARP research. From 1995 to 2007, total Medicaid spending on such services more than doubled to 41 percent, according to the Kaiser Commission on Medicaid and the Uninsured. These programs now serve some 2.8 million Americans.
Reducing these services, experts say, is a false economy because it forces people into nursing homes, which cost the state more. Florida’s Community Care for the Elderly, for example, spends about $5,000 a year to help one older person remain in her home; more extensive state Medicaid home services cost $8,000 per person, and the average cost of a Florida nursing home is $65,000.
“Home care, meals, help for Alzheimer’s caregivers—all help the state save money by keeping people out of nursing homes, and that’s a message we want to take to legislators,” says Randy Hunt, CEO of the Senior Resource Alliance, an area office on aging in Orlando. Hunt knows that lawmakers now working on Florida’s 2010 budget are staring at an estimated shortfall of $5 billion.
In the coming months, states will be looking for sources of new revenue—higher taxes on cigarettes, sales taxes on the Internet, increased traffic fines—and trying to find the least harmful cuts they can make. Reluctant to chop a whole program or service, lawmakers may freeze or cut fees to those who provide the services, including not only nursing homes and hospitals, but also agencies that supply home care workers and health aides. Such cuts, though, eventually tend to translate into problems of access and quality of care, says Nick Johnson, director of the state fiscal project for the CBPP.
Unfortunately, even the economic stimulus package assembled by Congress and President Obama—with its billions of dollars of state aid, including more than $87 billion for state aging and Medicaid programs—does not fully protect these home and community long-term care services. “The stimulus money will give states a baseline, so cuts may not have to be so drastic,” says Donna Folkemer, group director for health at the NCSL. “But it probably won’t allow new programs or even help them to hold on to all the current programs.”
And standing still can be moving backward. Consider Florida. While its Community Care for the Elderly escaped cuts this year, for nine years it has gone without a budget increase while its target population of older residents has grown by 700,000, according to Jack McRay, advocacy manager at the AARP Florida state office in Tallahassee. Today, 50,000 older Floridians are on waiting lists for these kinds of home services, state experts say, and 2,272 people died last year while on lists.
Those numbers worry Shirley Miller, who, up until she was 80, earned extra money by working the night shift at the reception desk of her apartment building. “When you’ve been independent all your life, you don’t want to ask for help,” Miller says. “But I just can’t keep up anymore. I need help.”
Barbara Basler is a senior editor at the AARP Bulletin.
Illustration by Gerald Dubois