Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear.

Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear. When people face difficulties with personal care or otherwise living independently, they usually come to depend on the help of others. About 12.5 million persons of all ages in the United States need this type of assistance, almost half of whom are under age sixty-five (Kaye, Harrington, & LaPlante, 2010).

The set of health and social services delivered over a sustained period to people who have lost (or never acquired) some capacity for personal care is called long-term care (LTC) or long-term services and supports (LTSS). The latter term is increasingly being used because it emphasizes the fact that most of the care is supportive and collaborative. Ideally, LTSS enable recipients to live with as much independence and dignity as possible in the least restrictive environment that they desire. LTSS can be provided in institutional, community, or home settings and can involve assistance with such daily activities as walking, bathing, cooking, managing medications, and overseeing finances. It can be furnished by paid providers (formal care), unpaid family and friends (informal care), or by a combination of the two. LTSS can also include creating conditions that facilitate independent living, such as home modifications, accessible transportation, and special equipment like a motorized wheelchair. LTSS differs from most topics discussed in this volume because it depends heavily on social services and less on medical services.

The demand for LTSS will grow rapidly in the coming years due to the aging of the population overall, as well as increased lifespans. Reductions in infectious diseases have contributed to an increase in life expectancy, from 49.2 years in 1900 to 78.5 years in 2009. This, combined with falling birthrates, leads to elderly people constituting a growing segment of the population. By 2030, when most Baby Boomers will have reached age sixty-five, one in five Americans (72 million people) will be elderly. Those ages eight-five and older will increase from about six million today to nineteen million by 2050 (Federal Interagency Forum on Aging-Related Statistics,2012). While LTSS needs can exist at any age, older adults are the most likely to experience personal care disabilities. Adults aged eighty-five years and older are the most likely to need assistance with routine household activities, with about one-third needing help with routine needs compared to 14 percent of those ages 75 to 84, 6 percent of those ages 65 to 74, and 4 percent of those ages 45 to 64; women have higher rates of disability at all ages (seeTable 16.1). The rapidly increasing older population and their high rates of disability highlight the growing relevance of long-term services and supports issues.

This chapter summarizes the current status of the LTSS system, describing the services and policy issues for institutional care (such as nursing homes), home and community care, informal unpaid care, and the workforce in those sectors. It highlights how financial considerations have framed the dominant policy debates and research agenda. Policymakers frequently consider community services and family care as less expensive substitutes for nursing home care, making quality-of-life issues a secondary priority. Older adults and disability advocates, however, prioritize independence and quality of life over costs. Complicating the debate between independence and the costs of care is the diversity by gender, race or ethnicity, and income among older Americans.

Institutional Care

When most people think about long-term care or LTSS, the first service that comes to mind is nursing home care. But only 4.2 percent of older adults live in nursing homes, with an additional 2.7 percent living in community housing that offers supportive services (Federal Interagency Forum on Aging-Related Statistics, 2012). Nevertheless, the high cost of nursing home care, averaging $73,000 per year for double occupancy and $81,030 for a private room (Genworth Financial, 2012), make it a top policy priority.

Institutions that deliver long-term care services can be classified by the extent of medical or nursing care they provide. At one end are subacute facilities and skilled nursing homes that provide intensive posthospital care, twenty-four-hour skilled nursing, and often rehabilitation. At the other end are residential facilities with little or no medical or nursing care, but that offer assistance for functional activities like cooking and bathing, typically in board-and-care or assisted-living facilities. Regardless of the level of medical care, institutionalized populations have some level of disability that require care and supervision.

Public policy first encouraged the establishment of private long-term care institutions when Old Age Assistance (public aid for low-income elderly) was established in 1935 and specifically barred residents of publicly owned facilities from receiving this aid. The program allowed local governments to close their unpopular almshouses for the poor and ill, transferring the care of the ill and dependent elderly to private facilities, and shifting the costs to the states and federal government. The federal government later gave funds directly for the construction of more medicalized nursing homes in the 1950s to solve a hospital bed shortage and to save money by discharging hospital patients to a less intensive level of care (Wallace, 2012).

Public funding for nursing homes expanded dramatically after the passage of Medicare and Medicaid in 1965, fueling a rapid growth in the number of facilities. Both programs defined nursing homes as predominantly medical institutions, emphasizing the nursing over the home. Prospective payment for hospital care (through diagnosis-related groups, or DRGs), starting in 1984, provided strong incentives to hospitals to reduce the length of hospital stay and discharge patients to nursing homes for the last stages of treatment and recovery. In response, some nursing homes increased their emphasis on medical services so they could capture well-paid, Medicare-funded, posthospital patients. Growing governmental spending on nursing homes led to a number of initiatives to reduce the reliance on nursing homes, which has resulted in declining rates of nursing home use and increasing use of alternatives, including assisted living (Stevenson & Grabowski, 2010).

The 1999 U.S. Supreme Court decision in Olmstead v. L.C. also affected long-term care policy. The court ruled that the Americans with Disabilities Act (ADA) applied to public programs and that states had to administer their Medicaid (and other) programs in a way that provides assistance in the least restrictive setting possible when desired by recipients (Teitelbaum, Burke, & Rosenbaum, 2004). The decision further pushed states and the federal government to promote home and community services over nursing homes and has provided a reference point for aging and disability advocates when they promote LTSS alternatives that offer greater autonomy and independence.

The two primary types of LTC institutions in the United States are free-standing nursing homes and assisted living facilities (ALFs). Nursing homes provide residential and medical services to residents who require subacute and rehabilitative care after a trauma or major medical event such as stroke. They also provide these services to those at the end of life or those with long-term chronic care needs such as dementia. About 19 percent of elderly persons admitted to nursing homes stay for less than three months, 24 percent stay three months to a year, and the rest stay for more than a year (Jones, Dwyer, Bercovitz, & Strahan, 2009). While those with long stays used to be primarily individuals who simply needed help with daily activities (like meals or medication management), the growth of alternatives to nursing homes has led to an increase in the acuity (illness severity and disability) of residents.

The sixteen thousand nursing homes nationally are frequently privately owned (61.5 percent), relatively small (averaging 105 beds per facility), certified by both Medicare and Medicaid (87.6 percent), and part of a chain (54.2 percent). In 2004, there were about 1.7 million nursing home beds and 1.5 million residents, creating an occupancy rate of 87.3 percent (Jones et al., 2009).

The other major type of long-term care institution is assisted living facilities (ALFs), known in some states as residential care facilities for the elderly (RCF-E) or board-and-care facilities. Over 15,700 ALFs were operating in the United States in 2010, reflecting a 16 percent growth from 2005 (Sanofi-Aventis, 2011). ALFs are disproportionally located in more affluent areas and in California, Pennsylvania, and Florida (Stevenson & Grabowski, 2010). The facilities typically offer twenty-four-hour custodial care including assistance with basic activities of daily living, medication assistance, two to three meals per day in a common room, light housekeeping, social activities, and some transportation. Rooms are more likely to be private and more homelike than nursing homes and allow residents more autonomy over daily routines. In some cases they are individual apartments that have access to services as needed. The average AFL size is about seventy-five beds, and the median annual cost for one bedroom single occupancy is estimated at $39,000 in 2010 (Genworth Financial, 2012). Their occupancy rate in 2009 was estimated at 88.4 percent (Assisted Living Federation of America, 2009).

Although most people assume that Medicare pays for most nursing home stays, it will only pay for a maximum of one hundred days of posthospital recovery care (“postacute care”) and provides no coverage for custodial care (after recovery-oriented treatment has ended). Medicaid, by contrast, pays for custodial as well as postacute care. In 2007, nursing home expenditures accounted for 8 percent of all Medicare and 19 percent of all Medicaid expenditures (Ng, Harrington, & Kitchener, 2010). In addition, Medicaid pays more in the aggregate for nursing home care than any other source, followed closely by the residents themselves. Because the annual costs of nursing homes usually exceed the median income of $31,410 of householders age sixty-five years of age and older (Federal Interagency Forum on Aging-Related Statistics, 2012), many individuals who start paying out of pocket for care become eligible for Medicaid after “spending down” or depleting their resources. Nursing home spend-down has attracted policy attention because those who spend down account for a significant proportion of Medicaid nursing home expenditures and because the phenomenon is a demonstration of the catastrophic costs of long-term care. Impoverishment due to the high cost of home care has received little policy attention, but is also highly associated with spending down (Wiener, Anderson, Khatutsky, Kaganova, & O’Keeffe, 2013). The high cost of nursing home care has also led to policies that protect some of the income of spouses when one member of a couple is institutionalized under Medicaid. As a result, if one member of a couple needs nursing home care, the spouse who remains in the community is allowed to keep a modest amount of income that is not deemed available to pay for nursing home care, along with the home they remain in.

The ways that nursing homes are paid for is extremely complex. Medicare nursing home payment rates are generally higher than Medicaid rates, encouraging the growth of facilities that provide Medicare reimbursable subacute and rehabilitative services. Both programs pay per diem rates, but differ in how they calculate those rates and in what additional services may be billed. Reimbursement methods affect access to and quality of nursing home care. Low Medicaid rates can reduce both access to and quality of care, although simply increasing payments to nursing homes does not guarantee that the nursing home will spend the additional revenue in ways that improve patient outcomes rather than on increasing profits. To discourage nursing homes from taking only the least disabled (and least expensive) Medicaid patients, some states have tried reimbursement formulae that pay more for the care of the most disabled (Miller, Mor, Grabowski, & Gozalo, 2009). But this system may have the unintended consequence of reducing access for those needing only lower-level custodial care.

Although forty-two states have provisions for providing Medicaid home care services to assisted living facility (ALF) residents, in most states Medicaid-eligible residents must pay privately for the room-and-board component of care. Government regulation and market oversight tend to be much looser for ALFs than nursing homes since they are regulated solely by state licensing laws. Supplemental security income (cash assistance for the lowest-income aged, blind, and disabled) can be used to pay for ALF, but it is rarely enough (Stevenson & Grabowski, 2010). In addition, some government-subsidized senior housing buildings have added LTSS services to allow residents to remain living independently longer, creating enriched housing (Stone, Harahan, & Sanders, 2008).

Widespread concern about the treatment of nursing home residents has focused attention on quality-of-care issues. Of the three main aspects of quality of care—structure, process, and outcomes—the first two measures are most often studied. Research has shown a direct relationship between structure measures such as staffing levels and quality of care, leading to some states mandating minimum staffing levels for nursing homes above the federal standard (Harrington, 2005). Process and medical outcome measures frequently include the reduction of urinary incontinence, pressure sores, malnutrition, and pain. However, data and research on patient quality of life in facilities from the older person’s perspective are sparse. Other characteristics of nursing homes, such as for-profit status, have also been linked to quality, with better quality of care in not-for-profit nursing homes compared to for-profit institutions (Hillmer, Wodchis, Gill, Anderson, & Rochon, 2005).

One tool used to monitor nursing home quality is the federally mandated minimum data set (MDS) that provides information on every resident of a facility. The MDS contains assessment items for each resident covering seventeen areas, such as mood and behavior, physical functioning, and skin conditions. The data are aggregated at the facility level and used to identify potential quality-of-care problems when indicators like rates of pressure sores and weight loss are higher than average. The introduction of this monitoring system contributed to an improvement in quality of care, although much room for quality improvement remains (Wunderlich & Kohler, 2001).

Public policies seek to improve nursing home quality through both market mechanisms and regulatory means. Web sites such as www.medicare.gov/NhCompare provide information on quality of care including staffing levels, clinical outcomes, and complaints. The utility of such information is limited, particularly because prospective residents and their families frequently search for a nursing home in urgent and less-than-ideal circumstances and make decisions largely on criteria like distance, cost, and immediate availability. Unlike consumer goods and services, prospective residents and their families infrequently have the knowledge or the peace of mind to rationally peruse these complex data to balance cost, quality, and other relevant nursing home characteristics to make optimum decisions.

Community-Based Services

For many, long-term care conjures up the image of bedridden elderly residents in nursing homes. But older people with functional limitations usually prefer to remain at home, and most do so, often receiving assistance from family and friends as well as community agencies. The most severe limitations that require help from another person or special equipment are usually classified as activities of daily living(ADLs), which are personal care activities necessary to remain living at home, such as getting out of a bed or chair, dressing, and bathing.

Recent estimates indicate that as many as 5.4 million adults over sixty-five years of age who receive assistance with daily activities live in the community. As many older adults continue to live in the community and receive assistance with moderate or more severe disabilities (two or more ADLs) as there are older adults in nursing homes (Khatutsky, Wiener, Anderson, & Porell, 2012).

Community-based long-term services and supports (LTSS) include a wide array of programs such as home care, adult day care, transportation, and congregate meals. Home care is provided by visiting nurses, home health aides with some training who can provide basic personal care such as help with bathing, and homemakers or untrained workers who assist with housecleaning and some personal care. Adult day care is supportive care provided outside the home that often includes some therapies and nurse monitoring and may also assist family caregivers by providing a respite in caring and/or allow the family caregiver to remain employed when the elder needs constant monitoring. In addition to hands-on care, older adults may also use assistive devices such as walkers and grab bars, health and medication monitoring, and home-delivered meals. We refer to both in-home and out-ofhome services as “community-based” long-term services and supports in this chapter.

Medicare pays for limited community-based care since it emphasizes medically oriented, postacute home care, not the ongoing social support services many people need to live independently in the community. Medicare recipients must be homebound, under the care of a physician, and in need of part-time or intermittent skilled nursing care, or physical, speech, or occupational therapy. Despite its limited scope, the high skill level of those providing Medicare home care and its frequent use make Medicare the largest source of home care expenditures, covering two-fifths of all LTSS spending (Kassner, 2011). Medicare expenditures for home health care have steadily increased, from $18.2 billion in 2005 to $31.5 billion in 2010, and are projected to grow to $50.7 billion by 2020 (Centers for Medicare and Medicaid Services, 2011).

An exception to Medicare’s acute and postacute care bias is the Program for All-Inclusive Care of the Elderly (PACE), which was added as a permanent Medicare benefit in 1997. PACE combines Medicare and Medicaid funding in a capitated program that provides all needed medical and LTSS to low-income older persons who are disabled enough to qualify for Medicaid nursing home care. The integrated delivery model offers a continuum of community-based social and medical services, usually built around the extensive use of adult day care, to maintain elders in their own homes. Yet a number of barriers, including the requirement that disabled elders must leave their personal physicians and switch to the program’s physicians, have limited this program to serving only about 23,000 elders nationally.

Medicaid, unlike Medicare, does not limit community-based LTSS to posthospital care. The government’s concern with reducing Medicaid nursing home spending encouraged the expansion of Medicaid coverage of community-based services. The growth in both the availability and popularity of LTSS has led Medicaid funding for home health, personal care, and related services to grow from $17 billion in 1999 to $45 billion in 2008, when it served 3.1 million disabled low-income persons of all ages. Medicaid is the second largest payer of community-based LTSS after Medicare, accounting for about one-quarter of all LTSS spending (Kassner, 2011). Medicaid spending exceeds Medicare spending only when high-cost nursing home care is included. States have a wide discretion in enacting policies to cap the costs of many community-based long-term care services that are offered as “waiver” services, including limiting the number of persons who can receive services. As a result, more than 511,000 people were on waiting lists for these services in 2011, with an average wait time of twenty-five months (Kaiser Family Foundation, 2012).

There are nine million Medicaid beneficiaries who are disabled (all ages) or elderly who are also enrolled in the Medicare program. Known as the “dual eligible” population, these individuals are among the sickest and poorest of beneficiaries covered by either program. They are also among the most expensive, representing 15 percent of total Medicaid enrollment while accounting for 39 percent of expenditures, and comprising 21 percent of Medicare enrollment while accounting for 36 percent of Medicare costs. The Affordable Care Act of 2010 (ACA) includes a number of provisions that aim to improve care for the “dual eligibles” while reducing costs through better integration and coordination, improved quality, and increased access to community-based services. Notably, the ACA has established a Federal Coordinated Health Care Office charged with leading these integration efforts and improving coordination between the Center for Medicare and Medicaid Services (CMS) and the states that administer the Medicaid.

Another federal program that funds services to help maintain older adult independence at home and in the community is the Older Americans Act (OAA). Title III of the OAA spent $1.5 billion in 2010 for supportive services such as transportation and information or referral (25 percent of funds), congregate meals in locations such as senior centers (29 percent), home-delivered meals (15 percent), preventive health programs (1 percent), and caregiver support programs (10 percent) (Administration on Aging, 2012). The OAA also funds the nursing home ombudsman program that places trained volunteers in willing facilities to act as advocates for patients in those facilities. The OAA receives a fixed allocation of funds each year, in contrast to Medicaid and Medicare funding, which uses formula-driven budgets based on actual use and charges. The cap on OAA spending, and its relatively unchanged budget from year to year, creates a situation where some of its programs run out of money before the end of the year and are forced to refuse new clients. Moreover, the amount of assistance provided to each recipient tends to be even lower than that furnished by Medicaid programs.

The policy focus on cost containment has shaped the direction of research on community care. Community-based services are usually cheaper than nursing home care for a single individual, and services can delay institutionalization (Gaugler, Kane, Kane, & Newcomer, 2005), but total costs tend to be higher because more persons are served by community-based care than would have been served by nursing homes (Weissert, Chernew, & Hirth, 2003). In an effort to reduce spending during the recession of 2008 to 2012, many states attempted to restrict Medicaid LTSS eligibility or services to only those who were in imminent risk of institutionalization. Limiting Medicaid home care to individuals with high disability levels and high institutionalization risk, however, ignores the facts that functional decline often develops gradually and the need for home care exists along a continuum (Kietzman et al., 2012). Thus, persons who would benefit from a modest amount of help remain ineligible, and those who need substantial help bump up against arbitrary dollar or hour limits that exist primarily to reduce home care costs. A more client-focused paradigm makes all disabled persons eligible for some home care, with the quantity of care varying in a continuous fashion based on need (Weissert et al., 2003).

Another body of research examines the policy concern that publicly funded care will begin to substitute for care provided “free” by family and friends. Such a concern is based on the premise that formal (paid) and informal (unpaid) services are interchangeable and that an hour of paid care results in one less hour of care by family members. Most studies of the intersection of formal and informal services focus exclusively on allocating tasks between family caregivers and formal providers. Family members, however, often describe caregiving as a complex relationship, not simply as a set of discrete tasks. If a paid homemaker assumes the task of bathing a disabled parent, the care recipient’s children are likely to continue to express their concern for the parent through other supportive actions. It is thus not surprising that researchers find that formal services supplement rather than supplant informal care (McMaughan Moudouni, Ohsfeldt, Miller, & Phillips, 2012).

A similar line of research arises from the fear that large numbers of elderly people will come out of the woodwork to use new services because community-based services such as household cleaning, unlike nursing homes, are believed to be universally desired at high levels of service. This fear, too, appears to be misdirected. Some elderly people postpone assistance until they are extremely disabled in order to maintain a sense of independence (Kane, Kane, & Ladd, 1998). Having absorbed a value system that glorifies self-sufficiency, they may be reluctant to rely on others even when they are very needy. Those who fear that the expansion of community services will generate additional demand implicitly acknowledge that the elderly are drastically underserved.

Consumer Direction

As the demand for community-based services has increased, programs funded by the Older Americans Act (OAA) and Medicaid have developed innovative approaches to how these services are delivered. One important emerging trend is the advent and growth of consumer-directed services that offer more flexible benefits and consumer involvement in decision making than traditional agency-directed services. The growing popularity of consumer direction may partly be attributed to the aging of the Baby Boomers (the large post–World War II cohort born between 1946 and 1964), who are more likely to want to take an active role in decisions about their own care. LTSS are increasingly assessing consumer preferences and satisfaction with services and incorporating this feedback into service planning and delivery, and promoting consumer choice and control through programs that deliver personal care, respite care, and family caregiver support (Kunkel & Lackmeyer, 2010).

Consumer-directed personal care services typically allow low-income consumers to directly hire a caregiver of their choosing through public programs, including family members. Many states have adopted consumer direction as a way to improve the quality and reach of Medicaid-funded personal care services, while also driving down the costs. The national Cash and Counseling demonstration program used a controlled experimental design to compare the effectiveness of a consumer-directed versus traditional agency-managed service approach to personal care. In some cases savings were found from reduced nursing home use that offset the higher costs associated with increased access to personal care services; participants in the consumer-directed group were also more satisfied, their unmet needs were reduced, and no adverse effects were generated with regard to participant health and safety (Carlson, Foster, Dale, & Brown, 2007). The positive results of the consumer-directed model for consumers and for their informal and paid caregivers were similar for both older adults and younger disabled persons (Simon-Rusinowitz, Loughlin, Ruben, Garcia, & Mahoney, 2010).

Challenges to Expanding Community Care

The 2010 Affordable Care Act (ACA) is known primarily for a small number of key provisions that expand health insurance. One rarely discussed component of the ACA is a significant new program that would have expanded support for personal care and other home care services. For over twenty years policymakers and advocates have discussed ways of expanding community-based long-term care insurance using a social insurance model, extending beyond the welfare model of Medicaid. The Community Living Assistance Services and Supports (CLASS) Act was added as a component of the ACA to establish a voluntary national insurance system that would collect premiums from working adults and then provide them with cash assistance (about $50 a day) to pay for home-care expenses if they become disabled, at any age. The general outlines of the program had high levels of public support, but the specific law had exceptionally low levels of public awareness. The program was never implemented because the law specified financing parameters that turned out to be unfeasible, and modifying the law was impossible because of political changes in Congress (Gleckman, 2011). In the end, a policy that would have assisted the middle class with help at home floundered on a combination of financial and partisan complications, leaving this need unmet Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear..

The most fundamental critique of the long-term care “system” is that it does not look or work like a system. There is a wide variety of community and institutional services that have different systems of eligibility, financing, philosophies, and capacities. In addition, each state has different licensing and financial incentives for different types of long-term services and supports. Some states promote consumer direction and support families who provide caregiving, while others do not. The balance of state financing for community versus institutional care ranges from 15 percent community versus 85 percent institutional, to 60 percent community versus 40 percent institutional. And with public financing available mostly for the poorest and most disabled, the working poor and middle class are unable to afford to pay for LTSS, but also are not eligible for public support until they become destitute (Reinhard, Kassner, Houser, & Mollica, 2011).

Informal Care

Research refutes the enduring myth that families abandon their elderly relatives. Ethel Shanas was one of the first scholars to show that elderly people remain in close contact with surviving kin (Shanas, 1979), and more recent studies demonstrate that this contact translates into assistance during times of crisis. At least 90 percent of older adults who receive care at home get at least some help from their family or friends, and only 28 percent of those receiving family care also receive formal (paid) in-home assistance (Houser, Gibson, & Redfoot, 2010). In 2009, an estimated 61.6 million people in the United States provided some form of unpaid care to an adult with limitations, at an economic value of approximately $450 billion (Feinberg, Reinhard, Houser, & Choula, 2011).

Informal care continues to be allocated on the basis of gender. Women account for about two-thirds of those caring for an older person. Compared with men caregivers, women caregivers tend to be older, married, and the primary caregiver. Women provide more intensive and complex care, they are more likely to report difficulty with care provision and balancing caregiving with other family and employment responsibilities, and are more likely than men to suffer from poor emotional health secondary to caregiving (National Alliance for Caregiving, 2009).

Although informal caregivers often report feeling personally rewarded by the caregiving experience, most research on informal care focuses primarily on the burden it imposes. Studies have found that caregivers experience a range of physical, emotional, social, and financial problems. In many cases, caregiving responsibilities reignite family conflict, impose financial strain, and encroach on both paid employment and leisure activity (Pinquart & Sörensen, 2007; Savundranayagam, Montgomery, & Kosloski, 2011).

Despite the prevalence of informal caregiving and extensive documentation of the physical, emotional, and financial burdens experienced by so many, limited assistance is available. Informal caregivers often express the need for temporary relief from their caregiving responsibilities, and many interventions have been developed that improve caregiver outcomes, yet most caregivers continue to be underserved and have unmet needs (Gitlin & Schultz, 2012).

A dominant concern of policymakers is that caregivers will pass the responsibilities of care, and associated costs, on to the state. As a result, policymakers may support social services and financial assistance for caregivers to the extent that these programs are expected to encourage informal caregivers to continue to assume the greatest responsibility for care, postpone or prevent care recipient institutionalization, and save money. Such responses may be shortsighted, however, if they do not account for the economic consequences that accrue from losses in workplace productivity or from caregivers who withdraw from the workforce completely.

While many caregivers struggle to balance their caregiving and workplace responsibilities, policies that advance effective solutions have been limited. The Family and Medical Leave Act (FMLA), passed with widespread acclaim in 1993, provides leaves of no more than twelve weeks, but unlike policies in almost all other industrialized countries the leave is unpaid, it excludes part-time and contingent workers and those employed in small firms, and defines family narrowly. As such, the FMLA is available to fewer than 60 percent of workers and has resulted in notable inequities, as workers who are white, middle-class, and married are those most likely to be able to afford and use it (Wisensale, 2006) Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear..

A number of states have independently engaged in efforts to establish paid family leave programs. In 2002, California became the first state to offer paid family leave through the short-term disability system; Washington followed suit in 2007 and New Jersey in 2009. A study of the California experience finds positive effects for both workers and businesses. Policymakers and advocates alike are increasingly taking interest in the promise of these new programs (Appelbaum & Milkman, 2011).

Another policy initiative enacted to address the needs of informal caregivers is the National Family Caregiver Support Program (NFCSP). This program was established in 2000 through the Older Americans Act (OAA), which uses a social services model to provide services to all persons over age sixty (and now their caregivers as well), with no required means test. The NFCSP marks a significant paradigm shift as informal caregivers are now viewed as an OAA service population in their own right. States are charged with providing five services to caregivers: information about available services; assistance in gaining access to the services; individual counseling, organization of support groups, and caregiver training; respite care; and supplemental services (such as home modifications and emergency response systems). However, funding for the NFCSP is quite limited and, since its inception in 2000, has remained relatively flat, with an annual budget of about $153 million for each of the fiscal years 2008 through 2011 (Administration on Aging, 2012). This significantly constrains the scope of service coverage and the NFCSP’s capacity to provide more costly services like respite care to many caregivers. Future funding decisions will determine whether the program remains largely symbolic or if it grows into a significant source of support for caregivers nationwide.

Recent developments in health policy acknowledge the needs of informal (family) caregivers and have also begun to recognize the important and integral role they play as providers in the system of care—whether the care recipient is at home in the community, in acute or institutional care, or transitioning between these settings. The Affordable Care Act of 2010 (ACA) includes provisions that involve individuals and their caregivers as decision makers about care options, introduce new models of care that recognize family caregivers as partners in the caregiving process, and better support and prepare family caregivers to effectively assume the caregiver role (Reinhard, Kassner, & Houser, 2011).

Workers in the Long-Term Care System

An estimated four million direct care workers, funded primarily by Medicaid and Medicare, provide paid long-term care and personal assistance services for the elderly and for others living with disabilities. Almost 40 percent work as nursing aides, orderlies, and attendants in institutions such as nursing homes. The others care for residents in the community, half of them elderly, in homes and other community-based settings. Projected increases in the population of elderly and those living alone create an expanding need for community-based personal care and home health aides, which are currently the fastest growing occupations nationwide. Together with other long-term direct care workers, they will become the largest occupational group in the country, reaching five million workers by 2020 (Kaye et al., 2010; Seavey & Marquand, 2011).

Workers may enter the workforce for the intrinsic rewards of care work; they like their work when they are provided with resources and support to provide quality care and to cope with the physical and emotional demands of care work (Delp, Wallace, Geiger-Brown, & Muntaner, 2010). But fiscal and bureaucratic constraints, work overload, time pressure, lack of respect, discrimination and abuse, role ambiguity, and job insecurity, combined with the financial strain of low wages and limited health benefits, create stress and dissatisfaction. Turnover rates range from 35 to 65 percent among aides in community and home care settings and are even higher in long-term care institutions (National Institute for Occupational Safety and Health, 2009; Seavey & Marquand, 2011). Direct care workers in long-term care are predominantly middle-aged women of diverse racial or ethnic backgrounds. While women are a minority of other occupations (46 percent), they make up 87 percent of nursing aides, home health aides, and personal home care aides (see Table 16.2). These direct care workers are also more likely to be immigrants, and almost one-third are African American. Nearly half (45.9 percent) of these direct care workers live in or near poverty, about twice the rate of all other workers.

Home care workers earn as little as minimum wage, and half earn $9.44 an hour or less, while the median nursing home wages are only slightly higher, at $11.54 an hour. Total income may be considerably less for the many workers able to obtain only part-time employment; annual median earnings for home care aides in 2009 were $12,000. Only 52 percent of nursing home and residential care workers and 32 percent of home health care workers have access to employer-sponsored health insurance (Seavey & Marquand, 2011).

Home health care workers and personal care aides must often patch together multiple clients to obtain sufficient hours of care work to earn a minimal income and, in some cases, to be eligible for health insurance. They do so by traveling from one client to another, often without payment for the costs of that travel, which can be substantial. The need to travel between clients in all types of weather and traffic results in a high risk for traffic accidents and injuries, on top of injuries sustained in clients’ homes from heavy lifting, needle punctures, assaults, and trips and falls. Over 48,000 annual work-related injuries and illnesses are reported to the federal government for home care workers (Seavey & Marquand, 2011). Official statistics underestimate the true number of injuries, since workers may continue to work while injured or ill. Workers without sick leave may be unable to afford the loss of paid work days, and those without substitute workers may be forced to choose between caring for the consumer or for their own health (Delp et al., 2010) Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear..

Aides in nursing homes have the highest injury rates of any occupation, exceeding even construction workers and truck drivers, with as many as 60 percent reporting an injury in the previous year and, among those injured, 24 percent unable to work. Mandatory overtime, frequent job changes, lack of respect, and low wages were key predictors of injury (Khatutsky et al., 2012).

Demographic trends present critical questions to policymakers and society at large. As we confront the growing need for workers, how do we avoid low wages and poor working conditions that lead to high turnover and labor shortages, and create quality jobs that are sustainable for workers and that enhance quality care for the elderly? While society increasingly depends on workers who provide personal assistance to the elderly at home, the outdated 1938 Fair Labor Standards Act excludes those workers from basic minimum wage and overtime pay protection. The act was amended in 1974 to protect domestic workers, but continues to exclude workers who provide “companionship services to individuals who because of age or disability are unable to care for themselves.” Many states have enacted laws to provide minimum wages for home care work, although exclusions often remain for workers who live with the consumer they care for and for those who are family members. Inadequate data limit the ability to assess the impact of these policy decisions. National surveys do not accurately capture the number of workers who provide long-term care in the home, especially paid family members, and only limited research exists to assess the impact on worker health when unrelated providers live with the consumer. At the federal level, the Department of Labor proposed eliminating the “companionship exemption” in 2012 and will clarify when basic minimum wage and overtime protections apply to home care workers.

Other policy debates surround the issue of how employment relations are structured in the unique setting of the home. A growing trend toward publicly funded, consumer-directed care—in which consumers have a voice in choosing who will care for them—addresses gender and class inequities by enabling low-income family members to receive payment for providing home care services. This policy challenges the traditional belief that women should provide unpaid care, an expectation that places an undue burden on women and on low-income families that must juggle paid work outside the home and unpaid care for family members. Many states have structured consumer-directed care to extend a voice to home care workers through unionization, raising wages, providing benefits, and creating a mechanism for workers to collectively advocate for improved home care services. Other initiatives include implementing worker cooperatives, defining key competencies and appropriate training to promote direct care worker retention and career advancement, and passing legislation to require that a minimum percentage of revenues generated from direct care services be expended on the workforce providing those services; as a result of this policy, wage increases led to a decline in turnover rates among Illinois workers employed by a private national home care company (Seavey & Marquand, 2011; Stone & Harahan, 2010). Coalitions of workers and consumers will be critical to advocate for quality jobs and quality care and to ensure policy changes that meet the growing demand for long-term care.

Gender, Race, and Class in Long-Term Services and Supports

Long-term services and supports are generally designed around functional needs and reimbursement types, not around population groups. Nonetheless, different populations have varying patterns of LTSS use that are sometimes the result of preferences and other times the result of inequitable policies and practices. In American society, inequities are most likely to occur along the lines of gender, race, and class.

The impact of gender on nursing home use is most evident among the oldest old (age eighty-five and over), where the institutionalization rate for women is almost twice that of men (14.1 percent versus 7.9 percent in 2010). Some of the reasons for this trend are that women are more likely to be widows than men, they have higher levels of disability in advanced ages, and they are poorer and so are less able to afford to pay for alternative services. Policies that provide better incomes for women in old age, such as better Social Security coverage for periods when women leave the workforce to care for young children or aging parents, would provide more resources if they become disabled in old age. In addition, bolstering community care resources for low-income seniors will disproportionately assist older women who want to remain in their own homes.

Race and ethnicity also define sharp differences in institutional use, and there is an interaction with immigration. The highest institutionalization rate among the oldest old is by African Americans (see Table 16.3), followed closely by non-Latino whites and then by U.S.-born Latinos. The lowest rates are mostly among immigrants.

Gender, Race, and Class in Long-Term Services and Supports

The trend over time has been for non-Latino whites to use nursing homes less and ALFs and community care more, while the use of nursing homes for African Americans has been rising steadily over the years. Nursing homes have also been found to mirror the racial segregation of the communities they are in. This results in African Americans and Latinos disproportionately residing in facilities with worse quality of care as measured by licensing inspection deficiencies and staffing levels (Fennell, Feng, Clark, & Mor, 2010; Smith, Feng, Fennell, Zinn, & Mor, 2007). It is unlikely that the growth in minority nursing homeAides in nursing homes have the highest injury rates of any occupation, exceeding even construction workers and truck drivers, with as many as 60 percent reporting an injury in the previous year and, among those injured, 24 percent unable to work. Mandatory overtime, frequent job changes, lack of respect, and low wages were key predictors of injury (Khatutsky et al., 2012).

ORDER A FREE-PLAGIARISM PAPER HERE

Gender, Race, and Class in Long-Term Services and Supports

preferences, given the fact that most older adults of all races and ethnicities report preference to remain living at home as long as possible.

The rising rates of African Americans in nursing homes have been interpreted as the result of access barriers to community LTSS that are needed for African American elders to remain at home, combined with increasing options such as assisted living for older adults with more income (who are more often non-Latino white), which allow them to avoid nursing homes (Feng, Fennell, Tyler, Clark, & Mor, 2011). In addition, African Americans have significantly higher levels of disability than non-Latino whites, and the increasing levels of disability in nursing homes result in somewhat more African Americans entering that level of care. Similar dynamics may be operating for older Latinos, who also have higher levels of disability than older non-Latino whites (Markides & Wallace, 2007). Recent public policies that are designed to improve the quality of care in nursing homes have attempted to use market principles to improve quality—such as higher reimbursements for better process and outcome measures. The unintended consequence, however, appears to disadvantage nursing homes with high percentages of minority residents, which further reinforces the quality-of-care gap between the nursing homes most often used by minority elderly and those most often used by non-Latino white elders (Konetzka & Werner, 2009). These findings suggest that not examining the impact of “color-blind” LTSS policies on racial and ethnic minority elders can exacerbate racial inequities in care.

There is much less research on the use of community-based LTSS by race or ethnicity, in part because there is less administrative data on the subject. There is some evidence that African Americans and Latinos receive less community-based LTSS when levels of needs are accounted for, but higher levels of informal (unpaid) assistance (Konetzka & Werner, 2009). It is unclear how much of this is due to barriers in obtaining formal support versus preferences for family assistance. In states where family members can be paid by public programs for providing care, the barriers may be somewhat less.

Specific research on class factors in long-term care is sparse and primarily deals with the problems faced by Medicaid recipients. The quality of life of Medicaid nursing home residents appears to be especially poor. Medicaid recipients tend to be relegated to institutions that, according to some measures, offer the worst-quality care. Some observers argue that social policy for older persons in the United States creates a two-class system. Low-income elderly rely on Medicaid and other poverty programs, while those who are better off benefit from tax preferences, employment-based retiree benefits and privately purchased long-term care policies. Poverty programs are the most vulnerable to cuts because their constituency lacks political and economic clout.

The greatest difference by class may lie in services provided outside the bounds of established organizations. Although most studies ignore the vast network of helpers recruited through ad hoc, informal arrangements, some evidence suggests that disabled elderly people rely disproportionately on this type of assistance. A national survey found about one-third of unpaid caregivers reported that their care recipient also had paid help from aides, housekeepers, or others, with whites and high-income caregivers the most likely to have this additional assistance (National Alliance for Caregiving, 2009). The help from such workers typically is not included in government statistics; however, it constitutes a major source of assistance to the affluent that is not available to others.

Future Directions

It is estimated that about 70 percent of persons who reach age sixty-five will have some long-term care needs during the rest of their lives. On average, they will need functional or other assistance for three years, two-thirds of that in their own homes, with mostly unpaid assistance from friends and family. Their final year, on average, will be spent in a nursing home or assisted living facility (Kemper, Komisar, & Alecxih, 2005). Nevertheless, the set of services available is largely uncoordinated, the financing inadequate, and public knowledge about available services woefully inadequate. The rapid growth of the older population will put new strains on our long-term care system, especially when the Baby Boom generation reaches age eighty-five, beginning around 2030. We can confidently predict that this cohort will be disproportionately widowed women with high rates of disability and poverty; a growing number will be members of racial and ethnic minorities.

Although the priority in both policy and research is typically on cost containment, the most critical issue is how we can provide adequate and high-quality long-term care services equitably to this growing and diverse population. The limited financial resources of many older people create a need for a universal Medicare-type of social insurance for long-term care. The failure of the federal government to implement the CLASS Act in 2011 was not because of the lack of need; it merely delays the day when public policy will have to provide adequate attention to the growing elderly population and the organization and financing of long-term services and supports in a way that provides adequate-quality, equitable services to the population in need Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear..

SUMMARY

The rapidly growing older population is the most likely to need assistance with living independently. A wide variety of different formal services have developed to help families provide the care needed by those with disability, but their organizing and financing is not coordinated. Most Americans do not know enough about their likely needs for long-term services and supports during their lifetimes, nor about how to get help when they need it. Public policy has focused for many years on ways to restrain the rising costs of LTSS to government. The Baby Boom generation will likely push policy to also better address affordability, adequacy, and quality in the coming years.

Note

This chapter includes sections drawn from earlier editions of the chapter that were written by Emily Abel. Partial support of Wallace and Kietzman for this work was provided by The SCAN Foundation.

KEY TERMS

· • Activities of daily living (ADLs) Personal care activities needed to maintain independent living, usually includes transferring out of a bed or chair, dressing, bathing, eating, using the toilet, and often walking. The number of these activities that a person needs assistance with is used as a measure of disability and as eligibility criteria in some policies and programs.

· • Assisted living facility (ALF) A facility that offers supportive care (such as help with bathing), but not medical care in a more homelike environment than nursing homes.

· • Formal care Long-term services and supports that are provided by paid workers. May be in any setting (such as a nursing home or a personal home).

Special Populations

Resources

· Special Populations Scoring Guide.

· Writing Feedback Tool.

Select one of the special populations from the readings. For this assignment, you will submit a paper of 1–2 pages that evaluates the current issues and policies in health care management in regard to economic, sociological, and political methodologies specific to this population.

· What are the main issues facing this special population, particularly concerning access, quality, and cost-effective care?

· What are some public policies that would support the needs of this special population?

Note:Your instructor may also use the Writing Feedback Tool to provide feedback on your writing. In the tool, click the linked resources for helpful writing information.

Special Populations Scoring Guide

Due Date: End of Unit 4.
Percentage of Course Grade:10%.

Note: Your instructor may also use the Writing Feedback Tool to provide feedback on your writing. In the tool, click on the linked resources for helpful writing information.

CRITERIA	NON-PERFORMANCE	BASIC	PROFICIENT	DISTINGUISHED
Describe the unique health care access and policy issues within a special population. 34%	Does not identify the unique health care access and policy issues within a special population.	Identifies the unique health care access and policy issues within a special population.	Describes the unique health care access and policy issues within a special population.	Describes the unique health care access and policy issues within a special population, and provides illustrations of these issues in the literature.
Explain public policy supporting a special population. 33%	Does not describe public policy supporting this population.	Describes public policy supporting this population.	Explains public policy supporting this population.	Explains public policy supporting this population, and gives examples of how implementation of the policy is supportive to the population.
Communicate clearly and in a professional manner. 33%	Does not communicate clearly and in a professional manner.	Communicates with a lack of clarity or unprofessionally.	Communicates clearly and in a professional manner.	Consistently communicates clearly and in a professional manner.

Please attention should be paid to the scoring guide

The special population I chose for this assignment is on the aging population Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear.

Americans, and people throughout the world, are living longer and healthier than at any time in human history. Nevertheless, the human body and mind often become compromised at some point in life and can lose functional capacity due to accidents, disease, or accumulated wear and tear.

ORDER A FREE-PLAGIARISM PAPER HERE

Like this:

DISCLAIMER

QUICK LINKS

CONTACT INFO

We accept

ORDER A FREE-PLAGIARISM PAPER HERE

Share this:

Like this:

DISCLAIMER

QUICK LINKS

CONTACT INFO

We accept