November/December 2009

The Future of Long-Term Care
By Athan Bezaitis, MA
Aging Well
Vol. 2 No. 5 P. 14

Huge numbers of aging baby boomers are creating the need to improve long-term care and increase the numbers of professionals who design and deliver it.

Long-term care is the ugly, redheaded stepchild of healthcare. Usually seen as a burden on the government, as well as consumers, it is not traditionally considered part of the healthcare system. Baby boomers prefer to avoid thinking about a time when they will need sustained care, but the reality may soon be staring them in the face—if not yet in the mirror—when they look into the eyes of their aging parents.

The population aged 65 and older is predicted to double from around 38 million today to nearly 71 million by 2030, according to estimates by the U.S. Census Bureau. Despite obvious pending demand, problems with affordable access to long-term care services abound. Workforce shortages are predicted on all levels in long-term care settings. About 5.7 million to 6.5 million long-term care workers, such as nurses, nurses’ aides, and home health and personal care workers, will be needed by 2050, representing a drastic increase from the 1.9 million workers employed in such positions in 2000, according to a 2003 report from the U.S. Department of Health and Human Services (HHS). Nearly bankrupt states are cutting Medicaid budgets, threatening the viability of Medicaid-funded services and long-term care options for the most vulnerable Americans. The solution, many advocates say, lies in a national long-term care insurance program.

Many Americans are afraid to look ahead to a time when basic fundamental tasks of everyday life, such as dressing and toileting, may become too difficult to manage alone. This year, about 9 million Americans over the age of 65 will need long-term care services, according to HHS. This figure is predicted to rise to 12 million by 2020 and, according to figures from the Family Caregiver Alliance, will soar to 27 million by the mid-century mark. Clearly this issue will affect large numbers of Americans in the very near term. The HHS predicts that 70% of elders over the age of 65 will require some kind of long-term care during the course of their lifetimes.

Long-Term Care: A Nonsystem
Long-term care connotes a continuum of care. More than just nursing homes, facility-based long-term care also includes services such as assisted living, continuing care retirement communities, and board-and-care homes. Home- and community-based services are also considered part of the continuum. These include adult day service programs, home healthcare aides, meal programs, senior centers, and transportation services.

“Long-term care is an amorphous thing,” says Kate Wilber, PhD, the Mary Pickford Foundation Professor of Gerontology at the University of Southern California Davis School of Gerontology. “Traditionally, we’ve had acute and primary care with long-term care as an afterthought. We should be moving toward a chronic-care mentality.” Her approach to long-term care acknowledges that although older adults living with diseases such as diabetes, asthma, or chronic heart conditions cannot be cured, their illnesses can be managed through quality healthcare and improved self-management. “This is a new way of thinking,” she says. “Historically, long-term care meant the end of health treatment and the beginning of custodial care or warehousing. Long-term care needs to be thought of as more of a process.”

Older adults with chronic diseases move from hospitals to rehabilitation centers to nursing homes; they interact with home-health aides, nurses, doctors, and social workers. To them, all of these services are part of the same medical system. Yet, apart from a brief period of recuperative care, there is little coverage for long-term care through Medicare. The onus for payment then falls to older adults, who usually have no private long-term care insurance and must pay the bills from their savings. This means that if they are considered middle-class Americans, the only way to qualify for Medicaid—the nation’s leading funder of long-term care services—is to “spend down” their assets and become destitute. This can affect spouses, other family members for whom they might have otherwise been able to provide some support, the quality of services and their environments for their remaining life, and individuals’ legacies for future generations.

The burden of care also falls on family and friends. Most long-term care services are nonspecialized tasks such as bathing, dressing, caring for incontinence, preparing food, and providing transportation. Loved ones, who often go unrecognized and uncompensated for their expenses and labor, carry out 80% of these responsibilities. “The ones with families are the lucky ones,” Wilber says. She predicts that for boomers, a higher proportion than for members of previous generations will not have children or spouses to fall back on for support.

Quality Matters
Nursing homes are now subject to a five-star rating system called Nursing Home Compare, described on the Medicare Web site. Simply inputting a nursing home’s name or area code allows a user to compare the quality of care at various locations. David Brechtelsbauer, MD, CMD, a faculty member at the University of South Dakota’s Sanford School of Medicine and the 2009-2010 president of the American Medical Directors Association, an organization of physicians and others practicing in the continuum of care, calls it “an important first step” but emphasizes that “it’s not always a choice system.” Discharge agents at hospitals often make decisions regarding where older adults will go following discharge. Often family members are told that their loved ones will be released in three days and given two or three options, he says.

Regarding Nursing Home Compare, Wilber ponders, “Is it a feel good service? Who uses it? How does it affect real behavior? Just because we have a star system, it doesn’t mean we are done with nursing home or long-term care reform.”

Choosing long-term care services is also confusing for many consumers. “If I want to buy yogurt, coffee, or bread, there are tons of different kinds,” Wilber adds. “But if I want to buy long-term care insurance or services, it’s pretty hard to figure out what works best and what’s out there. For example, there are transition costs. If I want assisted living, that’s a huge decision that’s very hard to undo once the decision is made.”

No Bliss in Ignorance
Many older Americans are uninformed regarding long-term care expenses and incorrectly assume that the government will cover the cost of services. HHS reports a 2008 national average of more than $68,000 per year for a semiprivate room in a nursing home. A year’s worth of in-home help from a part-time nurse’s aide just three days per week costs about $18,000. These represent high costs for an older population whose annual income averages $27,000.

According to a 2001 national survey from AARP, fewer than 10% of those surveyed could come close to estimating the actual cost of nursing home care and fewer than 25% had an accurate idea of monthly charges at an assisted living facility. Fifty-five percent, including those who said they were very familiar with long-term care, incorrectly believed that Medicare covers extended nursing home stays.

Medicare does in fact pay for a brief period of skilled services or recuperative care lasting no longer than three months, though the benefits decline after the first 20 days. This short period of care comprises about 20% of long-term care service needs, according to HHS. Out-of-pocket payment from family members covers 18.1% of costs, while private insurance covers just 7.2%.

The majority of payment for the nation’s long-term care services comes from Medicaid, the joint federal and state health insurance program for the needy, which funds 49% of the total. Administered by the states, the program requires individuals to have spent all but approximately $2,000 of their assets in order to qualify. Once these individuals meet the criteria, Medicaid recipients can receive from Social Security an allowance of only about $30 per month. Although the program was established as a safety net for low-income elders needing long-term care, exorbitant costs often cause middle-class seniors to exhaust all of their financial resources, forcing them to join the ranks of Medicaid beneficiaries and leaving them essentially broke.

“Every country in the world over the last 15 to 20 years has looked at a welfare-based long-term care system and decided it is not sustainable,” says Howard Gleckman, senior research associate at the Urban Institute and author of Caring for Our Parents. “In France, Japan, and Germany, they decided the solution was a federal system. We looked at it, too, and said Medicaid wasn’t viable, but instead of creating a federal insurance plan, our option was to place our needs in the hands of private insurers.”

The private insurance market has failed to attract significant interest. State incentives such as tax credits and partnership programs that would allow buyers to offset their assets and still participate in Medicaid have done little to encourage people to purchase long-term care insurance, says Gleckman.

Brechtelsbauer agrees the financing of long-term care is a critical component to healthcare reform but doesn’t see it emerging as a national priority. While he does not envision successful reform efforts in the near future, he acknowledges that major cutbacks will have a powerful effect.

“Cuts to Medicaid mean potential limits on the percentage of long-term beds nursing homes can offer,” he says. Traditionally, states are slow to reimburse nursing homes for long-term care Medicaid beds, forcing them to rely on private payment and Medicare-funded post-acute care rehab beds. As a result, “There are a larger percentage of assisted living facilities that are starting to adopt more of a hospitality business model,” he explains. Yet additional trimming of Medicare threatens funding for short-term convalescent care as well.

Medicaid Viability
With so few individuals purchasing private insurance, the government burden under the current Medicaid system will continue to balloon. Increased expenditures on long-term care will add $44 billion annually to the cost of Medicaid by 2030, according to research from the Heritage Foundation. Medicaid already accounts for a greater share of expenditures than elementary and secondary education in some states.

“In California, with the budget crisis, they just eviscerated home- and community-based services,” Wilber says. “They set it back to the 1970s. You know what they say: So goes California, so goes the nation.”

New York, Nevada, Rhode Island, and South Carolina have all cut back Medicaid benefits in 2009, according to a report from the Kaiser Commission on Medicaid and the Uninsured.

“Adult day programs are getting cut back, reimbursement rates for nursing homes are getting cut back, so the question is, what happens if you’re somebody on Medicaid and you lose your adult day care program? If you don’t have your family to fall back on, there’s a good chance you could die,” Gleckman says.

Novel approaches to funding and delivering long-term care, such as naturally occurring retirement communities and Cash & Counseling, which allows older adults on Medicaid the choice to manage their own budgets in order to select the services that meet their personal needs, are important strides for improving the long-term care infrastructure. But such innovations are far from sufficient to accommodate the needs of tomorrow’s older population. Cuts to Medicare and the scaling back of Medicaid portend changes in how the government expects to pay for long-term care. The fate of a national long-term care insurance plan appears to be tied to the success of overall healthcare reform. Hope for change lies in the mandate of consumers who seek improvements both for themselves and their loved ones.

Long on Consumers, Short on Providers
Cutbacks will affect workforce issues, another major concern related to long-term care. “If we continue on the way it’s going, I think the long-term care workforce is inadequate,” says Mary Jane Koren, MD, MPH, assistant vice president of The Commonwealth Fund and leader of the Picker/Commonwealth Program on Quality of Care for Frail Elders. Labor comprises 70% of nursing home costs, according to the American Health Care Association. Decreased government funding could potentially force layoffs, lower salaries, or reduce benefits to workers, thereby affecting the quality of care.

Workforce shortages exist at all professional levels of the continuum of care. Currently, there are only 7,000 certified geriatricians. The American Geriatrics Society predicts 36,000 new geriatricians will be needed to keep up with the population shift. Brechtelsbauer says the image of working in a long-term care setting is far from positive: “It’s partly about prestige; there is the notion that as soon as you get into a nursing home, you’re not going to be a good doctor.” However, a 2002 study published in the Archives of Internal Medicine reported that geriatricians have the highest level of job satisfaction of all subspecialties.

Improved staff training is necessary on all levels, Koren adds. “In nursing homes, doctors are asked to be medical directors; however, there is very little in the med school curriculum to train them for this role.” Nurses, she says, are also asked to be administrators. “They rotate through nursing homes as part of their general training, but they are not always prepared to be supervisors.”

Turnover is high in facility-based long-term care settings, making training difficult. According to the Alzheimer’s Association, more than 50% of the people in nursing homes suffer from cognitive disorders such as dementia. These individuals are frequently uncooperative, often resist care, and can be violent. “You’re taking care of bodily functions that create bad odors. It’s hard work,” Brechtelsbauer says. “In my town, there is a meat packing plant with similar wages. Some entry-level workers prefer to work there.” Yet many people are committed to working in an industry where there is ample opportunity on the horizon. Positions in services for elders and individuals with disabilities are predicted to grow by 74% from 2006 to 2016, according the U.S. Department of Labor. The government is also being called on to provide federal scholarships that would encourage work in the areas of geriatrics and geriatric nursing.

“The government will have to build real incentives, not unfunded mandates,” Brechtelsbauer says. “It’s easy to say but hard to do when we’re talking about real money.”

Hope also lies in the “culture change” movement that emphasizes the one-on-one relationship between older adults and those who provide their care. “We’re trying to make the quality of the workplace as good as the quality of care for nursing home residents,” Koren says. Backed by organizations such as Pioneer Network, The Commonwealth Fund, the National Citizens’  Coalition for Nursing Home Reform, and Wellspring, proponents of culture change envision a nursing home environment based on consumer-driven models that embrace flexibility and self-determination. “For older patients and their families, the ideal setting is something more like the home than a hospital,” Koren says.

In response to increasing desire by older adults to age in place, some states have gradually increased spending on home and community-based care over the past several years. These gains, however, are threatened by recent cuts to home- and community-based services in many states prompted by the current recession. Still, Koren believes home- and community-based services have the potential to force nursing homes to compete in a long-term care market.

— Athan Bezaitis, MA, is a freelance writer based in southern California. Zachary Gassoumis and Aaron Hagedorn, PhD, contributed to the reporting in this article.

Comparing Nursing Homes
David Brechtelsbauer, MD, CMD, president of the American Medical Directors Association, recommends making two visits before choosing a nursing home—one announced and another unannounced. Visits require lead time, he says, and prevent the scrambling of trying to locate and evaluate the best possible care at the last minute. Another valuable tool, available on the Medicare.gov Web site, is Nursing Home Compare. The service offers access to detailed information about every Medicare- and Medicaid-certified nursing home in the country.

The site is easy to use. Simply follow the four easy steps from Medicare.gov:

Step 1: Find nursing homes in your area. Search by name, city, county, state, or zip code.

Step 2: Compare the quality of the nursing homes you’re considering using the five-star quality ratings, health inspection results, nursing home staff data, quality measures, and fire safety inspection results.

Step 3: Visit the nursing homes you’re considering or have someone visit for you. Use the Nursing Home Checklist and other resources under “Additional Information.”

Step 4: Choose the nursing home that best meets your needs. Talk to your doctor or other healthcare practitioner, your family, friends, or others about your nursing home choices. Contact the long-term ombudsman or state survey agency before you make a decision.

— AB