But states are now recognizing that seniors and the disabled of all income levels need help navigating the complex array of local care providers, and are setting up one-stop counseling centers for anyone wanting advice on services and how to pay for them.
"Most people want to remain at home, but whether they have money or not, they simply don't know where to turn for home-based long-term care," said Susan Reinhard of AARP . "Ironically, people who can afford home services are the ones most often left in the dark."
Wisconsin in the mid 1990s was the first to set up what it called Aging and Disability Resource Centers (ADRCs), well-advertised storefronts that provide information and advice on home care services, such as bathing and dressing, meal preparation, nursing, housekeeping and specialized transportation.
Now, 42 other states, with the help of federal grants, are following Wisconsin's lead.
The movement is part of a national effort to help the elderly and those with mental and physical handicaps maintain their independence, while reducing the cost per person of Medicaid and other long-term-care assistance programs.
Since 2004, the U.S. Department of Health and Human Services (HHS) has given states more than $42 million in grants to create Wisconsin-style centers, which now serve about 22 percent of the population. Last month, 11 states - Alaska, Arkansas, California, Florida, Georgia, Illinois, Indiana, Iowa, New Mexico, North Carolina and Wisconsin - received additional money to make centers available statewide.
Besides keeping seniors and the disabled from being unnecessarily confined to nursing facilities, home care programs can save states billions on Medicaid, the federal and state program that provides medical assistance for the poor and handicapped. That's because home-based long-term care costs up to half as much as comparable nursing home care, according to AARP .
The savings help states stretch their Medicaid dollars and serve a larger population, Reinhard explained. In addition, states that help families make the most of their own resources can minimize the need for public assistance, she said.
But finding and helping people in need is not an easy task.
Most people put off planning for long-term care until a crisis strikes - a stroke, an accident or the death of a spouse. As a result, they often end up in nursing homes, not knowing where else to turn. According to a 2006 survey by HHS, seven out of 10 nursing home residents thought there were no other options in their area.
That was true in the past, but since the late 1980s, states have increased the proportion of Medicaid dollars spent on nursing home alternatives, making more services available for those who choose to stay at home . Last year, HHS provided states $1.75 billion in Medicaid incentives to continue funding home- and community-based health care alternatives over the next five years.
Still, most people are overwhelmed by the dizzying array of home care providers and don't know what services they or their family members need to live independently, said Donna McDowell, Director of Wisconsin's Bureau of Aging and Disability Resources .
Wisconsin's resource centers help people determine what services they need and where to find them, offering solutions as diverse as hiring a housekeeper to give a family caretaker a needed break to building a wheelchair ramp, arranging transportation to doctor's appointments and signing up for senior day-care programs, she said.
Just as important, the centers cut red tape involved in Medicaid, Medicare and private insurance coverage of long-term care. "People are relieved to learn they're not the only ones who can't figure out their insurance coverage. We call them shoebox cases because they often come in with a box full of medical bills," McDowell said.
Even before Wisconsin's resource centers were launched, the state employed so-called benefit specialists to help people get their medical bills paid. "Without a doubt, it has been the most popular program for the elderly for the past 20 years," she said.
Funded solely with state dollars, the $6.5 million program nets $8 in mostly federal benefits for every dollar spent. "That's money that goes right back into the state's economy," McDowell noted.
While other states are now trying to duplicate Wisconsin's success, it will take time, cautioned Donna Folkemer of the National Conference of State Legislatures . "The key is to set clear priorities by figuring out what problems people are experiencing. Then they need to coordinate dozens of organizations to fulfill those needs. It can't all be done at once," she said.
In most states, case workers meet people in a one-stop office, follow up by phone and ultimately visit clients' homes to help determine what services are needed. Using Web sites and mobile technology, ADRC employees make arrangements for services right from a person's home, explained Joseph Lugo of HHS. Caseworkers also stay in contact with clients over time as their needs change, he said.
Out of about $141 billion spent on long-term care each year, some $58 billion is funded by Medicaid, according to HHS. Medicare - the federal health care program for the elderly - pays about $28 billion, individuals and families spend $51 billion and the balance is paid by other public and private assistance programs, according to 2005 HHS data.
Since 1992, the proportion of long-term care provided by nursing homes has declined from an average of about 89 percent to 76 percent in 2005, according to HHS. States vary widely in both the cost of nursing facilities and the percentage of long-term care provided in them. Alaska has the highest nursing home cost at $196,735 per year and Louisiana has the lowest rate at $43,435, according to a MetLife survey.
Four states - Oregon, New Mexico, Alaska and Vermont - spend 60 percent or more of their Medicaid dollars on home-based care, while Mississippi and the District of Columbia spend less than 20 percent, according to AARP.