Dimensions of Long-Term Care Management: An Introduction, Second Edition

PART I

OVERVIEW OF LONG-TERM CARE

Our definition of long-term care has changed considerably throughout the twenty-first century. The changes have been prompted by major shifts in society: the aging of the baby boomers, growing numbers of individuals with disabilities living in communities, increased diversity in the population, changes in reimbursement for healthcare services, use of new technologies, and an evolution in healthcare policy supportive of older adults and people with disabilities. With an increased emphasis on the environments in which individuals live, as well as on home and community-based services, discussion of long-term care has evolved to focus on long-term services and supports , highlighting the social services and caregiving components of service delivery in post-acute care settings.

The passage of the Affordable Care Act (ACA) in 2010 brought new requirements and new opportunities for the provision of long-term services and supports. Greater coordination of care between acute and post-acute care services for Medicare patients has become a reality, with stronger emphasis on reduction of 30-day readmission rates to hospitals. Individuals transitioning back to the community may be supported by accountable care organizations that ensure continuous monitoring of health conditions and expedited access to services if needed. Significant changes in Medicare and Medicaid reimbursement for long-term care services, as well as new structures to facilitate innovative approaches to long-term service delivery, have all been implemented by provisions of the ACA.

Part I of this book explores basic definitions, statistics, and trends in long-term services and supports, providing context for discussions about the demand and consumption of these services. It examines models of long-term service delivery, including a more fluid model in which the key dimensions of residential services, home and community-based care, and technology and supportive services are accessed through a single entry point with the help of a care navigator. The authors encourage readers to use this introduction to become culturally competent on the issues of aging, chronic conditions, disabilities, and long-term services and supports, and to apply this knowledge to inform their career choices, workplaces, and personal interactions with others.

CHAPTER 1

INTRODUCTION TO THE DIMENSIONS OF LONG-TERM CARE

Mary Helen McSweeney-Feld, PhD, and Carol Molinari, PhD

LEARNING OBJECTIVES

After completing this chapter, you should be able to

explain changing patterns of demographics in the United States in terms of growing demand for long-term care services and supports;

define long-term care and long-term services and supports and describe models for long-term care service delivery;

discuss the providers and payers of long-term services and supports, including informal sources of support such as family caregivers;

apply the theoretical foundations of long-term care service delivery and understand their impact on healthcare policy; and

understand variations in long-term care service delivery and new directions for long-term services and supports.

CONSUMERS OF LONG-TERM SERVICES AND SUPPORTS IN THE UNITED STATES

OLDER AMERICANS

The United States is experiencing a remarkable demographic transformation. According to The State of Aging and Health in America, published by the Centers for Disease Control and Prevention (CDC), recent growth in the number of older adults, and in their share of the country's total population, is unprecedented (CDC 2013) (see exhibit 1.1). Compared with previous generations, Americans today are living longer, are more racially and ethnically diverse, and are more prosperous. In 2013, 44.7 million Americans—about 14.1 percent of the US population—were 65 or older, and 6 million were older than 85. By 2050, the number of people aged 65 or older is expected to double to 89 million, and the number of people aged 85 or older is expected to triple to 18 million. In 2013, 75.9 million baby boomers (people born between 1946 and 1964) accounted for almost a quarter of the US population. Rapid growth in this segment is predicted to continue, as is growth in the oldest old segment of adults over the age of 85.

Americans older than 65 are better educated than ever before. In 1970, 28 percent of older adults had a high school diploma; by 2014, that number had risen to 84 percent, and 26 percent had earned a bachelor's degree or higher (Administration on Aging 2014). With higher levels of education, older Americans enjoy higher incomes and net worth levels. Furthermore, an increasing share of their income comes from earnings, because more individuals are working past age 65, either from a desire to remain active in the workforce or out of economic necessity. Still, lingering income inequalities remain among older Americans, based on differences in gender, social and economic status, education, and race and ethnic background. Older African Americans and Americans without high school diplomas generally earn less and are less able to support themselves financially than the rest of the US population. For both older Americans and the population as a whole, healthcare expenditures in the United States are significantly higher than those in other developed countries.

Heart disease and cancer affect a large number of older adults in the United States, as do other chronic conditions such as stroke, chronic lower respiratory diseases, Alzheimer's disease, and diabetes (Courtney-Long et al. 2015). The average life expectancy in the United States lags behind that of other developed nations (Administration on Aging 2014). However, recent statistics have shown a decrease in disability and other impairments that restrict the functioning of older adults.

Income disparities and the high costs of healthcare have redefined the notion of retirement in the United States. Today's active elders desire to remain engaged in life—to be self-sufficient and to not burden their families. Recognition of the third age—the third stage of life, after retirement but before the onset of any major disabling health problems—is essential for fully comprehending the needs of older Americans.

ADULTS WITH DISABILITIES

Adults with disabilities occupy a significant position within the population of long-term care service consumers, primarily due to their participation in the labor force and their involvement in government programs and policies. According to a report by the CDC, 22 percent of adults in the United States—more than one in every five—have some type of disability (Courtney-Long et al. 2015). The most common type of disabling condition reported was a mobility limitation, such as serious difficulty walking or climbing stairs; this type of disability was reported by one in eight adults. Other common disabilities involved limitations in thinking or memory, independent living, vision, and self-care. Individuals with intellectual disabilities, as well as developmental disabilities, are included in these estimates. Veterans with disabilities also represent a significant portion of this group; according to the US Department of Veterans Affairs (2014), 4 million veterans reported having service-related disabilities in 2014. Exhibit 1.2 shows measures of US disability populations over time.

The CDC report also revealed that non-Hispanic black (29 percent) and Hispanic (25.9 percent) adults were more likely to have a disability than were white non-Hispanic (20.6 percent) adults. Adults who had lower education levels, were unemployed, or had lower incomes were also more likely to report a disability (Courtney-Long et al. 2015). Annual disability-associated healthcare expenditures were estimated at nearly $400 billion in 2006, with more than half those costs related to nonindependent living settings, such as institutional care and personal care services (Anderson et al. 2011). Such high costs underscore the importance of maintaining the health and functional status of individuals with disabilities.

Historically, the needs of older adults and the needs of adults with disabilities were addressed through separate laws and by different government organizations. The Older Americans Act (OAA), passed in 1965, created the Administration on Aging to provide seven types of services specializing in the needs of older adults. The Developmental Disabilities Assistance and Bill of Rights Act of 2000 established the Administration on Intellectual and Developmental Disabilities with six programs that supported and empowered individuals with disabilities living in the community. The government altered its approach to these areas in 2012, when the US Department of Health and Human Services established the Administration for Community Living (ACL) as an umbrella agency that included the Administration on Aging, the Administration on Intellectual and Developmental Disabilities, and the Office on Disability. The goal for ACL was to reduce the fragmentation of government services for older adults and adults with disabilities and to encourage common solutions for community-living services and supports (ACL 2016).

The media have had a challenging relationship with long-term care consumers. People older than the age of 65 are frequently labeled the elderly or senior citizens—terms that can be considered derogatory and are often associated with ageism, or discrimination based on a person's age. Similarly, individuals with disabilities are frequently described as wheelchair bound or handicapped, suggesting that their disabilities prevent them from living independently or performing meaningful work. Use of these terms can contribute to ableism, or prejudice against people with disabilities.

Much of the language we use in long-term care is in need of replacement. Some of it is unintentionally demeaning to people, contributing to a hierarchical sense of us and them instead of promoting a nurturing community with respect for its members (Schoeneman 2016). Advocacy organizations for long-term care consumers recognize these challenges, and they have promoted the use of the terms older adult and elder—empowering terms that recognize the life experience and wisdom of older members of the community. Similarly, disabilities advocates have recommended the use of the term people with disabilities to emphasize that people are not their disability and to focus on the abilities of individuals rather than their weaknesses.

Providers of long-term care services, as well as individuals pursuing careers in the long-term care field, are urged to understand these language changes and to adopt them in their interactions with long-term care consumers.

The reauthorization of the Older Americans Act in 2016 was a significant step forward by Congress to support the needs of older adults. The act keeps core OAA programs intact by authorizing an increase in specific funding levels of 6 percent over a three-year period, allowing for adjustments for states with growing populations aged 60 or older as well as minimizing losses for states losing population. The legislation also adds improvements to better support older Americans living at home and in the community, including assistance for older adults caring for adult children with disabilities (Blancato 2016).

Administration for Community Living (ACL)

An umbrella agency of the US government that provides services and supports for older adults and individuals with disabilities.

ageism

Discrimination based on a person's age.

ableism

Prejudice against people with disabilities.

WHAT IS LONG-TERM CARE?

Long-term care (LTC) consists of a variety of health services, support services, and other assistance provided informally or formally to individuals who have a chronic illness or disability and are unable to function independently. Long-term services and supports (LTSS) may be offered in various settings to people at any age who need help performing activities of daily living (ADLs) or instrumental activities of daily living (IADLs). Examples of ADLs include bathing, dressing, eating, toileting, and transferring (e.g., walking). Examples of IADLs include cooking, cleaning, buying groceries and other essentials, administering medication, handling money or finances, and using the telephone. Individuals with Alzheimer's disease and other dementias, as well as those with intellectual or developmental disabilities, may have additional, specialized needs. Long-term care services can be tailored to clients’ physical, mental, emotional, social, spiritual, and financial needs and capacities. Additionally, long-term care services may evolve over time in response to changes in clients’ needs and resources. Long-term care is oriented toward living with and managing chronic illnesses or disabilities, not curing them. As such, it aims to ensure continuity of care rather than deliver episodic interventions (Hooyman and Kiyak 2011).

long-term care (LTC)

A wide range of health services, support services, and other assistance provided informally or formally to individuals who have chronic illnesses or disabilities and are unable to function independently on a daily basis.

long-term services and supports (LTSS)

Services and supports provided to individuals at any age and in a wide range of settings that correspond to problems in performing activities of daily living and instrumental activities of daily living.

activities of daily living (ADLs)

Basic and routine daily activities such as eating, bathing, dressing, toileting, and walking. A person's ability to perform ADLs determines the level of long-term care needs.

instrumental activities of daily living (IADLs)

Activities that are not necessary for fundamental functioning but allow people to live independently. Examples include shopping, house cleaning, cooking, and managing finances.

INFORMAL CARE AND CAREGIVING

Caregivers supply long-term care services and programs, and they also influence people's decisions on which types of long-term care services to use. Caregiving may be performed formally by paid employees, informally by unpaid family members or friends, or through a combination of formal and informal approaches. Caregivers may live far away from the recipient, in the same community or neighborhood, or in the recipient's residence.

Caregiving is a complex concept that covers a wide range of services. It can extend to all ages: children (younger than 18), adults (aged 18 years or older), older adults (aged 50 to 64), elders (aged 65 to 85), or the oldest old (older than 85). The reason for care may involve impairments at birth, disability after an accident, complications resulting from a chronic condition, or Alzheimer's disease or other dementias.

Measuring the extent of caregiving that occurs is complicated by the fact that some individuals who provide care do not identify themselves as caregivers. Sometimes, care for an older parent or spouse is provided by adult children or spouses who do not label their help as caregiving, but rather as a normal part of family responsibility.

caregivers

Individuals who provide healthcare or supportive long-term care services on a formal, paid basis or on an informal, unpaid basis. Caregivers are an important part of the system of support that enables people who need and use long-term care services to live in the community.

WHO PROVIDES CAREGIVING SERVICES?

Nearly 18 million Americans provide care for a chronically ill, disabled, or aged family member or friend during any given year. Caregivers are more likely to be women (62 percent), and 50 percent are between the ages of 45 and 64. More than half (54 percent) of caregivers spend more than 40 hours per week providing care to their loved ones (Reinhard et al. 2015).

Two-thirds of individuals aged 65 or older rely exclusively on unpaid care for their personal care needs. An additional 30 percent use a mix of paid and unpaid care. The value of unpaid caregiving in 2013 was estimated to be $470 billion, and this figure continues to grow (Reinhard et al. 2015).

The caregiver for an older adult male is most likely to be his spouse. In contrast, older women are more often cared for by another family member—usually an adult child—in part because many women outlive their male spouses. Under the fragmented LTC delivery system in the United States, formal caregivers are more likely to come and go; meanwhile, family caregivers tend to remain and are often the only ones who witness a family member's entire illness (Levine et al. 2010). Caregiving can be highly stressful—especially for individuals caring for loved ones with Alzheimer's and dementia—and it likely impacts the caregiver's health status, finances, and opportunities for professional advancement (Adelman et al. 2014).

There are four challenges with respect to caregiving and caregivers: (1) the difficulty of collecting comprehensive information about family caregivers; (2) continued funding for training and support of caregivers; (3) recognition of the needs of caregivers in programs that transition individuals from institutional to noninstitutional settings; and (4) financing reforms (Levine et al. 2010). Some newer initiatives, such as the US Department of Labor guidelines for minimum wages and overtime pay starting in 2016, may assist formal caregivers and encourage others to provide caregiving services.

THE HISTORY OF LONG-TERM CARE SERVICE DELIVERY

To understand the structure of today's LTC delivery system, we must first look at the system's rich history and heritage in the United States. Research by Smith and Feng (2010) suggests that the past century has consisted of a series of cycles and concerns in long-term care, with five distinct periods of approximately 20 years each. Each period has focused on a specific concern and a supposed legislative solution, and each has contributed to the inadequate safety net of care that still exists today.

THE FIRST AND SECOND PERIODS

The first period lasted from the early 1900s until the 1930s. During this time, the infirm were placed together in almshouses, sometimes referred to as poor farms for elderly inmates. The Social Security Act, passed in 1935, provided pensions to older people, but with the stipulation that anyone housed in a public facility such as an almshouse could not receive one. Although the intent of the legislation was to bring about the end of almshouses, the law helped establish voluntary and proprietary nursing homes that accepted people with physical and mental infirmities (Mara and Olson 2008). Residence in these private boarding homes allowed those with long-term care needs to be eligible for federal Old Age Assistance, which became the hallmark of the second period—the old-age income security solution.

THE THIRD PERIOD

By the 1950s, new legislation emerged to establish the next phase of public financing for nursing home facility construction and public payment for long-term care services. This third period, which expanded access to affordable health insurance, lasted until 1970. Changes to the Social Security Act permitted payments to public LTC institutions and direct government payments to LTC facilities, which made the industry appealing to small-business owners. In addition, state licensure programs for nursing homes started to appear.

The Hill-Burton Act of 1946, as amended in 1954, provided federal grants (along with construction and design guidelines) to both public and not-for-profit companies interested in building nursing homes. However, the amendments stipulated that the nursing homes must be affiliated with hospitals, thereby promoting the medical model of care within the nursing home environment. In the late 1950s, the newly formed American Association of Nursing Homes successfully lobbied Congress to allow for-profit organizations to obtain nursing home funding from the Small Business Administration (SBA) and the Federal Housing Administration (FHA). The Kerr-Mills Act of 1960 followed and provided federal–state matching funds for the medically needy, including nursing home residents, and federal money for home care services.

The tradition of federal oversight and financing of long-term care carried over into the Great Society legislation of the 1960s. Medicare and Medicaid were signed into law in 1965, and a provision in Medicare covered posthospital extended care up to 100 days. Then, in 1967, the Moss amendments to the Social Security Act established new rules and regulations for Medicaid-funded nursing homes to follow.

Medicare

The federal health insurance program in the United States for individuals over the age of 65, those on Social Security disability benefits for more than two years, and those with Lou Gehrig's disease or end-stage renal disease. Medicare covers care provided in skilled nursing facilities for up to 100 days, as well as home care.

Medicaid

A means-tested federal insurance program in the United States that pays for medical care and other supportive services for low-income individuals, people with disabilities, and poor elderly persons. The states administer their programs under broad federal guidelines.

THE FOURTH PERIOD

The fourth period lasted from the early 1970s through 1990 and further expanded governmental attempts to control provider abuses. The Social Security amendments were extended to offer Medicare coverage to individuals with disabilities; the Supplemental Security Income (SSI) program was activated in 1974; and, by the late 1970s, certificate-of-need programs and amendments to the Medicare and Medicaid antifraud and abuse provisions were enacted. In 1983, concern about escalating healthcare costs led to the creation of Medicare diagnosis-related groups (DRGs), which limited payments to hospitals and helped move post-acute care to ambulatory care and nursing home facilities that had few payment limitations. The familiar theme of federal oversight of long-term care services emerged again in 1987 with the passage of the Omnibus Budget Reconciliation Act, creating the State Survey and Enforcement System for nursing homes.

THE FIFTH PERIOD

The period that began in the 1990s can be characterized as a phase of market-based reforms, innovative demonstration programs, and expansion of private insurance for long-term care expenses. In 1997, Congress passed the Balanced Budget Act, which established the Prospective Payment System for Medicare-funded posthospital services. In 2004, quality indicators were established for nursing homes that accept Medicare payments. The US Supreme Court's 1999 Olmstead v. United States decision, which prohibited unnecessary institutionalization of persons with disabilities, provided the impetus for the expansion of home and community-based services. By 2007, nearly 40 percent of Medicaid expenditures paid for services provided in noninstitutional settings. New homelike models of care evolved, such as assisted living, Eden Alternative housing, and Green House cottages. Despite these innovations, financial challenges remained. The cost of long-term services for all individuals who needed them, regardless of their geographic location or income, continued to strain government and family budgets.

Olmstead v. United States

A 1999 decision of the US Supreme Court that required states to eliminate discrimination against people with disabilities and to ensure that individuals with disabilities receive services in the most integrated setting that is appropriate.

THE PASSAGE OF THE AFFORDABLE CARE ACT: A NEW PERIOD

The passage of the Affordable Care Act (ACA) in 2010 helped focus attention on the integration and coordination of LTSS, as well as on opportunities to innovate service delivery and reimbursement. The creation of the Administration for Community Living in 2012 provided an opportunity for leaders in aging and disability service provision to deliver programs that benefit both LTSS consumer populations. In 2015, the United States marked the twenty-fifth anniversary of the Americans with Disabilities Act; the fiftieth anniversary of Medicare, Medicaid, and the Older Americans Act; and the eightieth anniversary of Social Security. Despite funding challenges, the White House Conference on Aging convened a number of regional sessions to solicit consumer input and recommendations in the areas of retirement security, healthy aging, LTSS, and elder justice. In addition, a new focus on preventive care service and primary care services delivery, innovative uses of technology for LTSS delivery, and support for informal caregiver services will continue to benefit these consumers. The reauthorization of the Older Americans Act in 2016 provides a stable source of funding for many services and supports used by older adults in the community seeking to maintain their independence (Blancato 2016).

Affordable Care Act (ACA)

A major healthcare reform law passed by the United States Congress in 2010. The ACA includes a number of provisions that affect the financing and delivery of long-term services and supports.

AGING, DISABILITY, AND CHRONIC HEALTH CONDITIONS

To understand the LTC service delivery system, you must first have a foundation of knowledge about the aging process; the components of functioning and disability as defined by the International Classification of Functioning, Disability, and Health (ICF); and dominant chronic health conditions. Changes in the functions and capabilities of the body are critical determinants of service provision and reimbursement.

Geriatrics is the branch of medicine that deals with the health and care of older adults. A physician who specializes in this area is called a geriatrician. Gerontology is the branch dealing with the process of aging and the problems of older adults. Many colleges and universities offer degree programs for students interested in becoming gerontologists.

aging process

Changes in the functions and capabilities of the human body that occur over time. Such changes are heavily influenced by genetic and environmental factors, as well as by access to healthcare services.

International Classification of Functioning, Disability, and Health (ICF)

The classification system developed by the World Health Organization for the health components of functioning and disability.

chronic health condition

A health condition lasting for a year or longer that requires ongoing medical attention and/or limits an individual's activities of daily living.

geriatrics

The branch of medicine dealing with the health and care of older adults.

gerontology

The branch of medicine dealing with the process of aging and the problems of older adults.

GENETIC AND ENVIRONMENTAL FACTORS

The way an individual ages depends on a variety of genetic and environmental factors, as well as on access to healthcare services. About 20 percent of a person's health is due to genetics, about 20 percent is due to the medical care received, and the other 60 percent is due to social, behavioral, and environmental factors, many of which people can and do influence by the choices made throughout life (Jenkins 2016). Key lifestyle choices may involve diet; exercise; use of alcohol, drugs, and tobacco; and outlook.

PHYSICAL SIGNS OF AGING

The body is the window to aging. Changes in a person's height, skin, and senses (e.g., vision, hearing) are normal parts of the aging process. The way the body regulates its various systems (e.g., circulatory, nervous, respiratory, digestive) is also affected by age. However, instead of looking at aging as a long, slow journey into decline and diminishment, we can look at it as a process of physical and mental fitness that enhances our well-being, and we can approach health as a tool for living our best life (Jenkins 2016). The Affordable Care Act's emphasis on health promotion and wellness complements this idea. It encourages older adults to move away from being dependent patients and toward becoming empowered consumers seeking a partnership with their healthcare providers and physicians (Jenkins 2016).

DISABLING CONDITIONS

Under the ICF, a disability is defined as an impairment that refers to individual functioning and encompasses physical, sensory, cognitive, and intellectual impairment as well as various types of chronic disease. Disability can be a multidimensional experience, and three dimensions of disability are recognized by the ICF: (1) bodily function, (2) activity restrictions, and (3) participation restrictions. Disabilities may be acquired at birth or developed later in life. The way people view disabilities has evolved over time: Today, having a disability is viewed as a social construct that relates to barriers created by society, not as a medical problem or condition.

Disability studies involve interdisciplinary approaches grounded in social science that look at the meaning, nature, and consequences of disability as a social construct. College and university programs have shown a growing interest in this area of LTC training.

disability studies

An interdisciplinary field of study that looks at the meaning, nature, and consequences of disability as a social construct.

CHRONIC HEALTH CONDITIONS

A chronic condition is a persistent health condition or disease that lasts for an extended period and typically does not have a cure. Chronic health conditions can affect both physical and intellectual functioning and can be medical or psychological in nature. Common chronic health conditions include arthritis, cancer, depression, diabetes, heart disease, hypertension, and respiratory illness. Chronic diseases are major causes of hospital readmissions in the United States and have received increasing attention in healthcare reform policies.

The emergence of a growing number of individuals with multiple chronic conditions has become an important issue. Such people require interdisciplinary care coordination to maintain and improve their quality of life (Goodman et al. 2013). Chapter 8 provides a more extensive review of chronic health conditions and their impact on long-term service delivery.

MODELS OF LONG-TERM CARE DELIVERY

As the US population ages, an expansion in the scope and depth of LTC services is driving changes in the provision and delivery of these services. A growing proportion of services are now provided in the home and in other community-based settings, rather than in traditional residential or acute care environments such as nursing homes or hospitals.

To facilitate reimbursement, many providers have organized their activities around a continuum of long-term care. This continuum is defined as a [holistic] system composed of both services and integrating mechanisms that guides and tracks clients over time through a comprehensive array of health, mental health, and social services spanning all levels of intensity of care…. It includes mechanisms for organizing those services and operating them as an integrated system (Evashwick 2005, 4). This continuum helps individuals understand and organize their thinking about the provision of LTSS. However, issues involving treatment and payment for chronic illness and the increasing complexity of the reimbursement system for long-term care (especially services provided on an informal basis) may require different approaches as the boomers and generations that follow prefer to live independently in the community.

Since the 1990s, many states have moved to a single point of entry (POE) model for long-term service delivery. The POE model is also known by various other names, such as single entry point and aging single-access point. Regardless of the terminology used, under the POE model, individuals can obtain all service referrals and service administration through just one provider organization. This movement has also grown in an attempt to comply with the Supreme Court's Olmstead decision, which requires individuals to receive LTSS in the least restrictive setting possible (Mollot and Rudder 2008). Having one provider that coordinates and delivers care can help minimize inefficiencies and red tape, saving the consumer time and money.

A similar model for the delivery of LTSS is the dimensions of care model, shown in exhibit 1.3. This model includes the services identified in the continuum of care model, allows consumers to have a single point of entry into the LTC delivery system, and emphasizes the option for consumers to use technology and supportive services to assist them in living independently in the community and in maintaining a high quality of life.

The emphasis on technology differentiates the dimensions of care model from other service models. Because this model promotes the use of technology and other supportive services to help older adults and individuals with disabilities remain independent in their homes and neighborhoods, it may be more flexible than other models if the availability of caregiving supports (especially informal supports) declines. However, the choice of how to use technology in LTSS delivery always belongs with consumers, and the person-centered care process acknowledges and supports their beliefs and traditions. The dimensions of care model is fluid and nonlinear in that it acknowledges that individuals may consume services in acute and post-acute care environments as well as in community-based settings. It also acknowledges the value of care coordination with the assistance of technology throughout these service transitions.

Though no model of LTC service provision is ideal in explaining the consumption of services, the dimensions of long-term care model gives consumers greater flexibility to select services that enable them to live independently in the community and enjoy greater quality of life. It forms the basis for the organization of this book.

Rural areas present special challenges to the delivery of long-term care services. Approximately 17 percent of people aged 65 or older reside in rural areas (Glasgow and Berry 2013), and rural elders make up a larger proportion of their communities’ population than older adults in urban communities do.

A large number of older adults live in rural areas of the South and West (Glasgow and Berry 2013). Rural elders, on average, are older than their urban counterparts, with many elders belonging in the oldest old category (older than 85). Diversity trends seen in the urban US population have also affected rural areas, with immigration of elders from Latin America and Asia (Gurak and Kritz 2013). Among rural elders’ challenges are insufficient transportation options, a limited number of care providers (especially physicians), and inadequate funding for community-based social and health services. In addition, poor older adults in rural areas often suffer from substandard living conditions, marked by nutritional deficiencies, dilapidated housing, and overall poor health (Rogers 1999).

The mix of residential and community-based providers for LTC services is also different in rural areas. Rural elders are more likely to use a nursing home than an assisted living facility (ALF), because of both income constraints and limited availability. They are more likely to rely on Medicaid than are urban elders, which means rural nursing homes generally have fewer services and higher utilization rates than urban nursing homes do. The same situation exists with rural ALFs: They tend to offer less privacy and fewer services than their urban counterparts. Many LTC services, such as skilled nursing care, are provided in institutional settings such as rural and critical access hospitals. Choices for nonresidential care services are also limited in rural areas. Home health care agencies are fewer in number, are more likely to use nursing aides, and offer a smaller variety of services. However, the growth of telehealth services (healthcare services provided via the Internet or other telecommunications technologies) has helped spread knowledge and use of community-based services in remote areas.

In 2008, the Rural Long Term Care Workgroup, an organization consisting of governmental and private LTC providers, convened a national workshop to identify strategies for building rural eldercare services. The group explored such options as resource and referral programs, day care–based Programs of All-Inclusive Care for the Elderly (PACE), telehealth, and care management. Community infrastructure building—which relies on the participation of churches, faith-based groups, and community organizations such as colleges and universities—and more flexible funding strategies from state Medicaid programs were identified as critical factors for the provision of high-quality services in rural settings (Rural Long Term Care Workgroup 2008).

continuum of long-term care

A holistic system comprising services and mechanisms that assist individuals over time with a wide range of physical health, mental health, and social services needs across all levels of care intensity.

single point of entry (POE) model

A model of long-term care in which patients can obtain all the services they need through a single agency or organization.

dimensions of care model

A fluid, nonlinear approach to long-term care that acknowledges the services identified in the continuum of care model, allows consumers to have a single point of entry into the LTC delivery system, and emphasizes the option for LTC consumers to use technology and supportive services to remain independent within their community.

KEY ASPECTS OF LONG-TERM CARE

WHERE ARE LONG-TERM SERVICES AND SUPPORTS PROVIDED?

Long-term services and supports are typically provided in the following types of settings:

Acute care

Ambulatory care

Home and community

Residential

Outreach and linkage

Technological

Care planning and care coordination services help consumers and their families navigate this range of options for service delivery. The list represents a consolidation and extension of earlier service models and incorporates new developments in LTSS, in addition to the use of technology to link service providers to consumers in remote areas.

WHAT KINDS OF ORGANIZATIONS PROVIDE LONG-TERM SERVICES AND SUPPORTS?

Healthcare systems, nursing homes, and other residential care organizations provide a large proportion of long-term care services. However, a growing number of services are delivered through home and community-based programs. These providers may be privately owned for-profit entities such as Brookdale Senior Living; not-for-profit organizations such as The Arc, United Cerebral Palsy, or Visiting Nurse Services; governmental entities such as the Area Agencies on Aging, Disabilities Administrations, or Veterans Affairs facilities; or faith-based organizations such as Catholic Charities, Jewish Federations, or the Lutheran Diakon. As the use of assistive technology as an option in the provision of LTSS grows, the list of organizations providing such technology may include small start-up companies as well as established computer, telecommunications, and pharmaceutical firms looking to expand their markets and services.

WHO PAYS FOR LONG-TERM SERVICES AND SUPPORTS?

Payment for formal LTSS in the United States comes primarily from government sources such as Medicare and Medicaid. According to the Centers for Medicare & Medicaid Services (CMS) National Health Expenditure Accounts data, total national spending on LTSS was $310 billion in 2013. Medicaid covered 51 percent of total expenditures, other public programs paid 21 percent, consumers’ out-of-pocket funds (i.e., payments for services directly by individuals) covered 19 percent, and private insurance (commercial insurance, managed care plans, and LTC insurance plans) accounted for 8 percent. These figures do not include Medicare spending on post-acute care services, which totaled $74.1 billion in 2013 (Reaves and Musumeci 2015).

QUALITY AND SAFETY IN LONG-TERM CARE SERVICES

The quality of LTSS has been a growing concern, and CMS has attempted to address this issue through regulations affecting the assessment of long-term care needs, the staffing of LTC communities, and the requirement for all nursing homes to have a quality assurance and performance improvement plan. States have also increased their regulation of assisted living communities and other residential options for consumers. Additional initiatives will result from ACA provisions and from the Medicare Innovation Center's work to examine new alternatives for providing LTSS. Chapter 17 provides an extended overview of that topic.

A LOOK AHEAD

The outlook for healthcare reform and its impact on LTSS is mixed. The LTC delivery system remains fragmented and patched together, and an increasing number of clients will likely enter the system as America ages. Like many European and Asian countries, the United States is facing the strains of declining tax revenues, expensive public health and retirement programs, and rapid growth in the population of people eligible to collect benefits from these programs. However, the passage of the Affordable Care Act and the reauthorization of the Older Americans Act provide a philosophical foundation for wellness and health promotion throughout all stages of our lives, as well as funding for critical home and community-based services for older adults. At the same time, providers are looking at new options for the provision of care and services, such as greater use of technology and shared resources in community settings. These options have spurred growth in new industries and created new job opportunities for individuals interested in providing care to the growing market of LTSS.

FOR DISCUSSION

What is long-term care, and who are long-term care consumers?

Distinguish the difference between formal and informal long-term services and supports.

Who are caregivers, and what types of services do they provide? Why are they an important part of long-term service delivery?

What are the periods of care in the history of LTC service delivery, and why are they important?

What is the White House Conference on Aging, and what are some of its challenges?

What are activities of daily living, and why are they used as determinants of need for LTSS?

What are some limitations faced by agencies and community organizations that provide LTSS in rural areas?

In what settings are LTSS provided, and which settings may become more important in the future?

Identify two major payers for LTSS in the United States. What are out-of-pocket expenditures for long-term care, and who pays them?

What measures have been taken by CMS to monitor the quality and safety of LTSS?

REFERENCES

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Administration for Community Living (ACL). 2016. Administration for Community Living. Accessed February 22. www.acl.gov/NewsRoom/Publications/docs/ACL_Factsheet.pdf.

Administration on Aging. 2014. A Profile of Older Americans: 2014. Washington, DC: Administration for Community Living, US Department of Health and Human Services.

Anderson, W. L., J. M. Weiner, E. A. Finkelstein, and B. S. Amour. 2011. Estimates of National Health Care Expenditures Associated with Disability. Journal of Disability Policy Studies 21 (4): 230–40.

Blancato, B. 2016. The Older Americans Act Finally Clears Congress. Next Avenue. Published April 14. www.nextavenue.org/the-older-americans-act-finally-clears-congress/.

Centers for Disease Control and Prevention (CDC). 2013. The State of Aging and Health in America 2013. Atlanta, GA: Centers for Disease Control and Prevention, US Department of Health and Human Services.

Courtney-Long, E. A., D. D. Carroll, Q. C. Zhang, A. C. Stevens, S. Griffin-Blake, B. S. Armour, and V. A. Campbell. 2015. Prevalence of Disability and Disability Type Among Adults—United States, 2013. Morbidity and Mortality Weekly Report 64 (29): 777–83.

Evashwick, C. 2005. The Continuum of Long-Term Care, 3rd ed. New York: Delmar Publishing.

Glasgow, N., and E. H. Berry (eds.). 2013. Rural Aging in 21st Century America. Dordrecht, Netherlands: Springer.

Goodman, R. A., S. F. Posner, E. S. Huang, A. K. Parekh, and H. K. Koh. 2013. Defining and Measuring Chronic Conditions: Imperatives for Research, Policy, Program, and Practice. Preventing Chronic Disease 10: 120239.

Gurak, D. T., and M. M. Kritz. 2013. Elderly Immigrants in Rural America: Trends and Characteristics. In Rural Aging in 21st Century America, edited by N. Glasgow and E. H. Berry, 331–52. Dordrecht, Netherlands: Springer.

Hooyman, N., and H. A. Kiyak. 2011. Social Gerontology, 9th ed. Boston: Allyn and Bacon.

Jenkins, J. 2016. Disrupt Aging. Philadelphia, PA: Public Affairs/Perseus Book Group.

Levine, C., D. Halper, A. Peist, and D. A. Gould. 2010. Bridging Troubled Waters: Family Caregivers, Transitions, and Long-Term Care. Health Affairs 29 (1): 116–24.

Mara, C. M., and L. K. Olson (eds.). 2008. Handbook of Long-Term Care Administration and Policy. Boca Raton, FL: Taylor and Francis Group.

Mollot, R. J., and C. Rudder. 2008. New York's Single Point of Entry for Long-Term Care: A First Year Assessment of Consumer Experience with Recommendations for the Future. New York: Long-Term Care Community Coalition.

National Center for Health Statistics. 2015. Health, United States, 2014: With Special Feature on Adults Aged 55–64. Hyattsville, MD: National Center for Health Statistics.

Ortman, J. M., V. A. Velkoff, and H. Hogan. 2014. An Aging Nation: The Older Population in the United States. US Census Bureau. Published May. www.census.gov/prod/2014pubs/p25-1140.pdf.

Reaves, E. L., and M. Musumeci. 2015. Medicaid and Long-Term Services and Supports: A Primer. Washington, DC: Kaiser Family Foundation.

Reinhard, S. C., L. F. Feinberg, R. Choula, and A. Houser. 2015. Valuing the Invaluable: 2015 Update. Washington, DC: AARP Public Policy Institute.

Rogers, C. C. 1999. Changes in the Older Population and Implications for Rural Areas. Washington, DC: US Department of Agriculture.

Rural Long Term Care Workgroup. 2008. Expanding Rural Elder Care Options: Models That Work. Proceedings from the 2008 Rural Long Term Care: Access and Options Workshop. Alexandria, VA: National PACE Association.

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CHAPTER 2

DELIVERING LONG-TERM SERVICES AND SUPPORTS UNDER THE AFFORDABLE CARE ACT

Mary W. Carter, PhD, and Patricia M. Alt, PhD

LEARNING OBJECTIVES

After completing this chapter, you should be able to

describe the impact of the Affordable Care Act (ACA) on the delivery of long-term services and supports (LTSS) for older adults and adults with disabilities;

describe the history and evolution of major programs and legislation providing long-term services and supports in the United States;

discuss key programs through the ACA and explain how each supports community-based living for older adults and adults with disabilities;

identify adults with multiple chronic conditions and adult populations with disabilities and explain the role of the ACA in improving access to services;

define dually eligible adult populations and discuss reforms under the ACA addressing access and delivery of LTSS for these individuals;

describe the impact of the ACA on nursing home quality and transparency, workforce development, long-term care consumer quality and safety, and home and community-based services; and

describe future challenges and opportunities for improving LTSS in the United States.

INTRODUCTION

In 2010, the United States Congress passed the Affordable Care Act (ACA), the most expansive reform in US healthcare policy since the implementation of Medicare and Medicaid nearly half a century earlier. Although the full implementation of the ACA will not be complete until 2020, provisions aimed at reforming the delivery of long-term services and supports are already affecting the various organizations, agencies, and individuals providing care for older adults and people with disabilities. Indeed, the ACA represents not only an essential aspect of understanding healthcare policy for adults needing LTSS but also a critical component to ongoing efforts to restructure LTC services. Important ACA provisions affecting LTC management and the delivery of LTSS address (1) nursing home transparency and improvement; (2) workforce stability; (3) patient safety, quality, and innovation; and (4) rebalancing long-term care and home and community-based options (Miller 2012).

Although specific provisions of the ACA focus on reforming the delivery of LTSS in particular, the overall scope of the law is much broader, affecting nearly every aspect of healthcare service use, access, quality, and cost. The ACA has been criticized at times for its length and complexity—the original bill signed into law was over 900 pages—but its expansive aims are reshaping healthcare. The law encompasses the key healthcare reform goals of expanding health insurance coverage, improving healthcare quality and patient safety, reducing healthcare costs and improving efficiency of care, and modernizing healthcare and expanding the use of health information technology (HHS 2015).

Long-term care interacts with, complements, and functions as an essential component of the broader healthcare arena, including the delivery of acute, subacute, rehabilitative, supportive, and long-term services across a broad spectrum of healthcare settings and locations. Therefore, the implications of healthcare reform for the field of LTC management are powerful and far-reaching. This chapter presents an overview of the ACA and its history, reviews major ACA LTC provisions, and describes their implications for the delivery of LTSS, as well as the subsequent implications for the management of LTC services in the post-ACA era.

rebalancing long-term care

The aim of shifting Medicaid dollars away from institutional care and toward community-based options with long-term services and supports in place.

OVERVIEW OF LONG-TERM SERVICES AND SUPPORTS IN THE UNITED STATES

Long-term care services are often described as the last stop along a continuum of healthcare settings; in practice, however, meeting the LTC needs of older adults and adults with disabilities is a dynamic process involving multiple players and frequent transitions across care settings and locations, with varying levels of services and support. A 2010 study found that nearly 5 percent of the adult population—or nearly 11 million adults—receive community-based LTSS, with nearly 60 percent of those people aged 65 years or older. An additional 1.5 million adults receive services in skilled nursing, intermediate care, or other long-term care nursing facilities, with nearly 92 percent of these adults aged 65 years or older (Kaye, Harrington, and LaPlante 2010). Snapshots of service use, however, fail to convey the more integral role played by LTSS in the broader interaction between providers, patients, and the healthcare system. For example, each year more than 20 percent of Medicare beneficiaries experience at least one transition between care settings, with nearly half of those adults transitioning across multiple care settings and locations (Callahan et al. 2012). Vulnerable older adults—those with complex medical needs stemming from multiple chronic conditions, frailty, and disability—are at the greatest risk of experiencing what have been termed complex transition patterns. Such patterns involve multiple transitions across settings with varying levels of intensity and service needs over longer periods of time (Callahan et al. 2012; Peikes et al. 2009).

These transitions require careful coordination and communication across providers to avoid unnecessary medical complications, adverse events, and errors. Until recently, the role of coordinating across providers received little more than academic attention, with discharge serving as the demarcation of provider responsibility. However, increased awareness of the critical nature of the transitions—and of the costs associated with poorly managed transitions resulting in rehospitalization—has served both to underscore the important role of LTSS and to more clearly focus healthcare policy on improving the quality and delivery of LTSS (Arbaje et al. 2014). Implementation of the ACA provides not only the mandate but also the means to reform care practices while strengthening the role of LTSS in achieving these goals (Gage 2014).

OVERVIEW OF THE AFFORDABLE CARE ACT

The primary goal of the ACA is to extend the availability of private healthcare insurance to individuals via market-based approaches supported by government subsidies. Although the law has been vigorously opposed by Republicans, the structure of the ACA closely reflects earlier healthcare reform efforts that were advanced by Republicans, including reform plans articulated by President Richard Nixon in the 1970s, while he was preparing for an expected campaign against Senator Ted Kennedy (Altman and Shactman 2011), as well as the Medicare Modernization Act passed during the George W. Bush administration (Morgan 2014). Rather than provide a national health insurance plan as envisioned in earlier reform efforts, the ACA extends coverage by mandating the purchase of healthcare insurance while using healthcare exchanges to achieve affordable and standardized options. In addition to extending health insurance coverage, the ACA aims to improve healthcare quality and control costs, in part, through changes to Medicare and Medicaid reimbursement schemes. The changes seek to reward quality of care and penalize unwarranted hospitalizations, thus emphasizing the need to coordinate services across acute and community-based settings (Moon 2012; Harrington et al. 2012).

Despite nearly 100 years of healthcare reform efforts, the ACA is the first piece of legislation to comprehensively consider the role of LTSS as part of larger healthcare reform initiatives, and the first to include specific provisions to improve both access to and quality of such services. The ACA also includes provisions that redirect spending away from institutional care in favor of community-based living options; encourage innovation in coordinating and delivering care; and build capacity and coordination across agencies that previously were tasked with meeting the needs of either older adults or adults with disabilities, but not both, despite the similarity of services and supports delivered (Caldwell and Alston 2012).

HISTORY OF LONG-TERM SERVICES AND SUPPORTS

Long-term services and supports is a broad term encompassing services and supports provided for adults of all ages who have physical, functional, or mental limitations in performing such day-to-day activities as dressing, bathing, eating, preparing meals, and taking medications (Kaye and Harrington 2015). Until recently, LTSS were developed and delivered in terms of age-specific categories, creating