With America's elders on their way to doubling by 2030, thanks to 78 million aging boomers, one might think health care reform would address the fragmented excuse for a long-term care (LTC) system needed to assist seniors as they become frail.
But, said former Secretary of Health and Human Services Donna Shalala, "We're not there, yet."
Now the president of the University of Miami, Shalala spoke at the Association of Health Care Journalists conference on "Aging in the 21st Century," in October. Shalala is among a select circle of experts, according to the New York Times (Nov. 2, 2009), who are doing the heavy lifting for President Obama in trying to guide Congress toward passage of a viable health care plan.
Her response takes on even greater importance now that the House leadership has included the late Sen. Ted Kennedy's CLASS Act - his basic proposal for expanding long-term care insurance - in the bill soon to go up for a floor vote.
The disjointed system of care for elders fails to cover - not even through Medicare - long-term assistance for persistent conditions and frailty. Medicare only covers acute-care conditions, such as broken hips or strokes. But once a stroke victim becomes medically stabilized, for instance, Medicare does not pay for extensive rehabilitation or therapy needed for a person to fully recover the ability to move or communicate.
Unlike any other economically advanced country, continuing-care coverage available to older Americans and people with disabilities is available mainly through Medicaid, a poverty program forcing people to "spend down" until they are poor enough to qualify. Private long-term care insurance is generally unreliable and covers only 6 percent of older Americans.
This reporter followed up with Shalala, "What about even Sen. Kennedy's CLASS Act?" (It stands for the Community Living Assistance Services and Supports Act.) Shalala repeated, sharply this time, "We're not there, yet." So don't bet on that provision getting to the president's desk - if any health care bill does.
Shalala did observe, though, that change might come eventually: "If we can get to chronic care management and some way of reimbursing people, we may be able to cobble together a serious long-term care plan." She said some hospitals are starting to organize LTC programs by adding services, such as chronic care management, and working with hospices for those with terminal illness.
"But," she stressed, "We're cobbling together, and it's not a seamless system."
Although Shalala's political instincts are instructive, the notion of covering one kind of care without the other makes little sense to many prominent experts. At the recent On Lok Annual Conference on eldercare, held in San Francisco, Joshua Wiener stated, "This kind of fragmentation in particular doesn't work well for people with chronic illnesses, chronic conditions, people with disabilities."
Wiener, long regarded as one of the most astute authorities on long-term care, emphasized, "We've got to find a better way to integrate acute and long-term care services."
A senior fellow at the Research Triangle Institute in the Raleigh-Durham area, Wiener emphasized that because people usually move frequently between LTC settings to hospitals because of their chronic conditions, perpetuating the current division between the two types of care makes no sense. Paying for one and not the other promotes discontinuity of care and in the end adds cost.
Avoidable hospital readmissions, alone, cost Medicare $18 billion a year.
In addition, continuing to pass costs on to families places a significant burden on them. For the millions of people who are not impoverished enough to qualify for Medicaid, he said, "Long-term care has catastrophic out-of-pocket costs on a routine basis. If you're going to use long-term care, you're going to head into catastrophic costs."
A key fact has been lost in the national debate over the capacity of the U.S. economy to handle the cost of comprehensive health care reform, Wiener said. Even though conservatives and the cable media have instilled fear in the American public that modest reforms would break the Treasury if they hit a staggering $1 trillion over 10 years - that amount would represent merely three percent of the $30 trillion projected over the coming decade in U.S. health care spending. That's $30 trillion if Congress does nothing to control costs.
A crucial factor artificially driving up U.S. costs for long-term care, he added, and forcing elders into unwanted care settings is our system's bias toward paying for nursing homes, when most people with disabilities are at home where they want to stay.
"The basic story," Wiener declared, "is that if we don't change, over the next 40 years, if we don't change the use rates for various services, the demand for those things will more than double." The proportion of U.S. elders 80 or older alone will double by 2040, he said.
Noting that the U.S. spent nearly a fifth of a trillion dollars on LTC in 2007. Wiener declared, "That's got no place to go but up," unless the American health care becomes more efficient. In the next 20-30 years, he estimates that without change LTC will double its bite on U.S. GDP.
The American future, Wiener said, can be found today in Europe, where LTC is "much higher on the agenda than in the U.S." That's because elders there are already at 17, 18 19 percent of their populations.
Like Shalala, though, Wiener is a prescription-half-full kind of expert. Although comprehensive LTC reform will be costly, he said, "that doesn't mean we should forget about lower-cost options and incremental change."
For example, he said, the National Family Caregiver Support Program at the U.S. Administration on Aging is now allocating only a couple hundred million dollars for 56 states and territories. As an existing program, he said, it would be fairly easy to ramp it up enough to serve low-income populations through local agencies on aging beyond the present limitations of providing information, agency coordination and demonstration projects.
New systems technology, such as electronic medical records, can help control costs and deliver care more effectively, he said. But at the end of the day, Wiener concluded, "long-term care is the quintessential, hands on personal service - provided by people. And we've got huge problems."
The U.S. LTC system has too few workers, offers too few pay and career incentives to recruit and retain them, has chronically understaffed facilities, and doesn't provide adequate training, said Wiener. "All of this has major implications for the quality of care."
Wiener conceded that LTC must take a back seat for now to the top priority of U.S. health care reform, covering the uninsured. But he predicted, "The demographics will drive long-term care politics." If not, he said, in 2040 long-term care will be the cover story in Newsweek for 26 weeks a year - "if it still exists."