Overview of Long-Term Care

• Physical and/or mental deficits that limit a person’s ability to do regular daily tasks create the need for long-term care. Activities of daily living (ADL) and instrumental activities of daily living (IADL) are two common measures used to evaluate functional status. • In addition to assistance needed to perform daily living tasks, long- term care may also be needed for continuity of care after hospitalization and when specialized environments of care are necessary. • Long-term care is complex. It is founded on 10 main dimensions that can also be viewed as fundamental principles that should guide the delivery of long-term care. • Not all elderly need long-term care, but an aging and culturally diverse population, coupled with social changes, will create ongoing challenges. People with HIV/AIDS present complex needs and they are also entering old age. • Those who need assistance obtain long-term care services through
three subsystems of care: informal, community based, and institutional. • Informal care is the largest of the three systems of long-term care. Community-based services have four main objectives and can be classified into two groups: intramural and extramural. The institutional system forms its own continuum of care to accommodate clients whose clinical needs vary from simple to complex. • Non–long-term care services are needed to complement long-term care. Care coordination between the two systems—long-term care and non–long-term care—is often necessary to meet a patient’s total care needs. Introduction Long-term care (LTC) is associated with physical and/or mental deficits that limit a person’s ability to do regular daily tasks that most humans take for granted. There can be numerous causes for functional limitations. Examples include complications arising from a person’s prolonged heart disease, onset of partial or full paralysis after a severe stroke, severe head injury from a motorcycle or industrial accident, loss of physical capacity by a young adult from a crippling disease such as multiple sclerosis, a child born with autism, or gradual loss of memory in an aged person. LTC services are needed mostly by the elderly—people age 65 and over—hence, most LTC services have been designed with the elderly client in mind. Long-term care is a complex system with broad boundaries (Prince et al., 2013). Diverse LTC services—sometimes referred to as long-term services and supports (LTSS)—are provided in a variety of community-based settings. Also, family members and surrogates provide most of the long-term care that is unseen to outsiders and generally unpaid. Nursing homes and other LTC institutions play a critical role in delivering advanced levels of LTC services that cannot be provided effectively and efficiently in community or home settings. In 2012, almost 8.4 million Americans
received LTC from a variety of formal sources such as adult day care centers, home health agencies, hospices, nursing homes, and residential care communities (Harris-Kojetin et al., 2013). Why the Need for Long-Term Care Broadly speaking, LTC services are needed under three main circumstances: 1. Need for assistance in doing tasks of daily living. As just mentioned, limitations arise because of physical and/or mental disability or severe illness. Besides physical disability, cognitive impairment also increases the need for LTC. Cognitive impairment is a mental disorder that is indicated by a person having difficulty remembering, learning new things, concentrating, or making decisions that affect the individual’s everyday life. Cognitive impairment with or without dementia contributes to neuropsychiatric symptoms and increased disability (Tabert et al., 2002). The level of a person’s dependency—ranging from partial to total—created by functional limitations determines the type of LTC service needed. Two standard measures are available to assess a person’s level of dependency. The first, the activities of daily living (ADL) scale, is used to determine whether an individual needs assistance in performing six basic activities: eating, bathing, dressing, using the toilet, maintaining continence, and transferring into or out of a bed or chair. Grooming and walking a distance of eight feet are sometimes added to evaluate self-care and mobility. Limitations in lower level ADLs, such as bathing, dressing, grooming, and walking without assistance generally do not require a person to be in an institution. Limitations in higher level ADLs, such as eating, toileting, maintaining continence, and transferring generally indicate the need for assistance in a long-term care facility. The second commonly used measure is called instrumental activities of daily living (IADL). This measure focuses on a variety of activities that are necessary for independent living. Examples of IADLs include doing housework, cooking, doing laundry, grocery shopping, taking medication,
using the telephone, managing money, and moving around outside the home (Lawton & Brody, 1969). Deficits in IADLs can generally enable a person to live independently with some support and assistance. The IADL measure is also helpful when a nursing home patient is being discharged for community-based LTC or independent living. It helps in assessing how well the individual is likely to adapt to living independently and what type of support services may be most appropriate to ensure that the person can live independently. 2. Need for continuity of care after hospitalization. The term subacute care is often used for services needed by people who need ongoing care after hospitalization because of a severe illness, injury, or surgical episode. These patients may be recovering but are still subject to complications while in recovery. Others may need clinically complex care, such as wound care, tube feedings, or intravenous therapy. Patients recovering from accidents or orthopedic surgery, such as hip and knee replacements, generally need intensive rehabilitation. 3. Need for care in specialized environments. Many children and adolescents need care in specialized pediatric environments because of physical and/or mental disabilities. Many children suffer from birth- related disorders that include cerebral palsy, autism, spina bifida, and epilepsy. The term developmental disability describes the general physical incapacity such children may face at a very early age. Those who acquire such dysfunctions are referred to as developmentally disabled, or DD. Mental retardation (MR), now more commonly referred to as intellectual disability (ID), refers to below-average intellectual functioning, which also leads to DD in most cases. Down syndrome is the most common cause of ID in America. The close association between DD and ID is reflected in the terms mentally retarded/developmentally disabled (MR/DD) or intellectually/developmentally disabled (IDD). Approximately 14% of children in the age group 3–17 are developmentally disabled; boys are almost twice as likely as girls to have DD (Boyle et al., 2011). Those with severe ID and/or DD are also likely to have disturbing behavioral issues and usually require institutional care in specialized facilities that provide special programming and services for children. For example, these facilities may have services and training for children to help them
cope with musculoskeletal deformities by using customized braces, splints, and wheelchairs. Patients with severe dementia, such as Alzheimer’s disease, also need tailored programming in specialized environments. For example, special therapies are used to address cognitive function and behavioral issues. A supportive environment is designed to reduce stress and provide a moderate amount of stimulation to the senses. Dimensions and Principles of Long-Term Care No simple definition fully captures the nature of long-term care. This is because a broad range of clients and services are involved. Yet, certain dimensions form a common core of what LTC is. Besides furnishing a definition, the explanations covered in this section provide fundamental principles that must undergird the delivery of long-term care. Long-term care can be defined as a variety of individualized and well- coordinated total care services that promote the maximum possible independence for people with functional limitations and that are provided over an extended period of time, using appropriate current technology and available evidence-based practices, in accordance with a holistic approach while maximizing both the quality of clinical care and the individual’s quality of life. This comprehensive definition emphasizes 10 essential dimensions that apply to both institutional and noninstitutional long-term care. An ideal LTC system will incorporate these 10 dimensions. 1. Variety of services 2. Individualized services 3. Well-coordinated total care 4. Promotion of functional independence 5. Extended period of care 6. Use of current technology 7. Use of evidence-based practices 8. Holistic approach
9. Maximizing quality of care 10. Maximizing quality of life Variety of Services Long-term care encompasses a variety of services for three main reasons: (1) to fit the needs of different individuals, (2) to address changing needs over time, and (3) to suit people’s personal preferences. Needs vary greatly from one individual to another. Even the elderly, who are the predominant users of LTC services, are not a homogeneous group. For example, some people just require supportive housing, whereas others require intensive treatments. The type of services an individual requires is determined by the nature and degree of his or her functional disability and the presence of any other medical conditions and emotional needs that the individual may have. Even for the same individual, the need for the various types of services can change over time. The change is not necessarily progressive, from lighter to more intensive levels of care. Depending on the change in condition and functioning, the individual may shift back and forth among the various levels and types of LTC services. For example, after hip surgery, a patient may require extensive rehabilitation therapy in a nursing facility for 2 or 3 weeks before returning home, where he or she receives continuing care from a home health care agency. After that, the individual may continue to live independently but require a daily meal from Meals On Wheels, a home- delivered meals service. Later, this same person may suffer a stroke and, after hospitalization, may have to stay indefinitely in a LTC facility. Hospice care may become necessary at the end of a person’s life. LTC services are an amalgam of five distinct types of services. Depending on individual need, these services are integrated into the total package of care. • Medical care, nursing, and rehabilitation • Mental health services and dementia care • Social support • Supportive housing • Hospice services
Medical Care, Nursing, and Rehabilitation These services focus on three main areas: 1. Continuity of care after treatment of acute episodes in hospitals. Postacute LTC often consists of skilled nursing care, which is physician-directed care provided by licensed nurses and therapists. 2. Clinical management of chronic conditions and comorbidity. Chronic conditions—such as heart disease, cancer, chronic lower respiratory diseases, stroke, and diabetes—persist over time and are generally irreversible but must be kept under control. If not controlled, serious complications can develop. The mere presence of chronic conditions, however, does not indicate a need for long-term care. When chronic conditions are compounded by the presence of comorbidity—coexisting multiple health problems—they often become the leading cause of an individual’s disability and erode that individual’s ability to live without assistance. This is when LTC is needed. Without LTC intervention in this situation, the risk of further morbidity and mortality greatly increases. Preventing complications from chronic conditions—tertiary prevention—is an important aspect of LTC. 3. Restoration or maintenance of physical function. Rehabilitation involves short-term therapy treatments to help a person regain or improve physical function. It is provided immediately after the onset of a disability. Examples of cases requiring rehabilitation include orthopedic surgery, stroke, limb amputation, and prolonged illness. Mental Health Services and Dementia Care An estimated 25% of older adults have depression, anxiety disorders, or other significant psychiatric conditions. Moreover, mental health disorders are frequently comorbid in older adults, occurring with a number of common chronic illnesses such as diabetes, cardiac disease, and arthritis (Robinson, 2010). The risk of depression in the elderly also increases when ability to function becomes limited (National Institute of Mental Health, 2007). Mental health services are generally delivered by specialized providers in both outpatient and inpatient facilities. Caregivers need training to recognize the need for mental health care so the patient can be referred to qualified providers in the community.
With the growing prevalence of dementia in the United States and around the world, care for patients with dementia has become a major focus in LTC. Dementia is a general term for progressive and irreversible decline in cognition, thinking, and memory. It is a denerative condition with no known cure. The risk of dementia increases with age. Approximately 15% of people older than 70 years of age have dementia (Hurd et al., 2013); the majority have Alzheimer’s disease—a progressive degenerative disease of the brain, producing memory loss, confusion, irritability, and severe functional decline. Although people with mild dementia may receive home-based care, almost 40% of people with dementia receive institutional LTC. Among institutionalized patients, almost 72% have a diagnosis of dementia, according to one study (Helmer et al., 2006). Social Support Social support refers to a variety of assistive and counseling services to help people cope with situations that may cause stress, conflict, grief, or other emotional imbalances. The goal is to help people make adjustments to changing life events. Various stressors commonly accompany the aging process itself and create such adverse effects as frailty, pain, increased medical needs, and the inability to do common things for oneself, such as obtaining needed information or running errands. Other stressors are event driven. Events that force an unexpected change in a person’s lifestyle or emotional balance— such as moving to an institution or loss of a loved one—require coping with stress or grief. Even the thought of change brings on anxiety. Many people go through a period of “grieving” when coming to terms with change, which is a normal part of the transition process. Grieving may manifest in reactions such as anger, denial, confusion, fear, despondency, and depression (McLeod, 2002). Social support is needed to help buffer these undesirable emotions that may trigger latent mental illness or become manifested in aggressive behavior. Social support is also needed when problems and issues arise in the interactions among people within social systems. For example, conflicts may arise between what a patient wants for himself or herself and what the family may think is best for the patient. Conflicts can also arise between patients and caregivers.
Social support includes both concrete and emotional assistance provided by families, friends, neighbors, volunteers, staff members within an institution, organizations such as religious establishments and senior centers, or other private or public professional agencies. For people residing in LTC facilities, to remain connected with the community and the outside world is an important aspect of social support. Supportive Housing Supportive housing is a key component of LTC because certain functional and safety features must be carefully planned to compensate for people’s disabilities in order to promote independence to the maximum extent possible. Some simple examples include access ramps that enable people to go outdoors, wide doorways and corridors that allow adequate room to navigate wheelchairs, railings in hallways to promote independent mobility, extra-large bathrooms that facilitate wheelchair negotiation, grab bars in bathrooms to prevent falls and promote unassisted toileting, raised toilets to make it easier to sit down and get up, and pull-cords in the living quarters to summon help in case of an emergency. Congregate housing—multiunit housing with support services—is an option for seniors and disabled adults. Support services are basic assistive services. They may include meals, transportation, housekeeping, building security, social activities, and outings. However, not all housing arrangements provide all of these services. Adequate space, privacy, safety, comfort, and cleanliness are basic features that must be present in all housing options. An institutional environment must feel home like; it must encourage social activities, promote recreational pursuits, and have a décor that is both pleasing and therapeutic. Hospice Services Hospice services, also called end-of-life care, are regarded as a component of long-term care. The focus of hospice, however, differs considerably from other LTC services. Hospice incorporates a cluster of special services for terminally ill persons with a life expectancy of 6 months or less. It blends medical, spiritual, legal, financial, and family support services. However, the emphasis is on comfort, palliative care, and social support over medical
treatment. Palliation refers to medical care that is focused on relieving unpleasant symptoms such as pain, discomfort, and nausea. The hospice philosophy also regards the patient and family together as one unit of care. The option to use hospice means that temporary measures to prolong life will be suspended. The emphasis is on maintaining the quality of life and letting the patient die with dignity. Psychological services focus on relieving mental anguish. Social and legal services help with arranging final affairs. Counseling and spiritual support are provided to help the patient deal with his or her death. After the patient’s death, bereavement counseling is offered to the family or surrogates. Hospice services are generally brought to the patient, although a patient may choose to go to a freestanding hospice center if one is available. Hospice care can be directed from a hospital, home health agency, nursing home, or freestanding hospice. Individualized Services Long-term care services are tailored to the needs of the individual patient. Those needs are determined by an assessment of the individual’s current physical, mental, and emotional condition. Other factors used for this purpose include past history of the patient’s medical and psychosocial conditions; a social history of family relationships, former occupation, community involvement, and leisure activities; and cultural factors such as racial or ethnic background, language, and religion. Information from the assessment is used to develop an individualized plan of care that enables caregivers to deliver customized interventions to address the patient’s needs in a comprehensive manner. The flow of individualization and delivery of care is illustrated in Figure 1–1. Figure 1–1 Individualization and Delivery of Care
Well-Coordinated Total Care Long-term care providers are responsible for managing the total health care needs of an individual client. Total care means that any health care need is recognized, evaluated, and addressed by appropriate clinical professionals. Coordination of care with various medical providers such as the attending physicians, dentists, optometrists, podiatrists, dermatologists, or audiologists is often necessary for preventive services and to deal with the onset of impairments at an early stage. The need for total care coordination can also be triggered by changes in basic needs or occurrence of episodes. Transfer to an acute care hospital or treatment for mental or behavioral disorders may become necessary. Hence, long-term care must interface with non-LTC services. Promotion of Functional Independence
The goal of LTC is to enable the individual to maintain functional independence to the maximum level practicable. Restoration of function may be possible to some extent through appropriate rehabilitation therapy, but, in most cases, a full restoration of normal function is an unrealistic expectation. The individual must be taught to use adaptive equipment such as wheelchairs, walkers, special eating utensils, or portable oxygen devices. Caregivers should be trained to motivate the patients to do as much as possible for themselves to prevent further decline. Assistance is rendered when a patient is either unable to do things for him- or herself or absolutely refuses to do so. A patient may be unable to walk independently but may be able to take a few steps with the help of trained caregivers. Assistance with mobility helps maintain residual functioning. Ongoing maintenance therapy —such as assisted walking, range of motion exercises, bowel and bladder training, and cognitive reality orientation—is also necessary to prevent progressive functional decline. However, in spite of these efforts, it is reasonable to expect a gradual decline in an individual’s functional ability over time. As this happens, services must be modified in accordance with the changing condition. In other words, LTC must “fill in” for all functions that can no longer be carried out independently. For instance, a comatose patient who is totally confined to bed presents an extreme case in which full assistance from caregivers becomes necessary. Extended Period of Care Compared to acute care services that generally last only for a few days, the delivery of LTC extends over a relatively long period. Certain types of services—such as professional rehabilitation therapies, postacute convalescence, or stabilization—may be needed for a relatively short duration, generally less than 90 days. In other instances, because of severe health and disablement issues LTC may be needed for years, perhaps indefinitely. Examples include people with severe dementia, incontinence of bowel and bladder, severe psychiatric or behavioral issues, unstable postacute conditions, or those in a comatose/vegetative state. People receiving community-based LTC services generally need them for a long duration to prevent institutionalization.
Use of Current Technology Use of appropriate technology can enable people to stay in the community. It can also improve overall safety and quality of care. For example, a personal emergency response system (PERS) enables an at-risk elderly person living alone at home to summon help in an emergency at any time during day or night. A fall detector can be used at home or in an institution. Electronic medication dispensers are programmed to dispense pills and sound an alarm as reminders for a person to take prescribed medications. Remote monitoring technology can be used to monitor vital signs, blood pressure, and blood glucose levels using video technology. Recently, remote monitoring of cardiac implantable electronic devices, such as pacemakers and implantable cardioverter defibrillators, in the United States and Europe has been gaining acceptance. The technology has been found to be highly effective in managing clinical events, such as arrhythmias and cardiovascular disease progression. Examples of technology for institutional settings include GPS (global positioning systems) to monitor a patient who may wander away, sensor technology to prevent and heal pressure ulcers by detecting moisture levels and length of time spent in one position, use of robotic pets, and pedometers to measure daily activity levels (Morley, 2012). Use of Evidence-Based Practices Evidence-based care relies on the use of best practices that have been established through clinical research. Increasingly, clinical processes that have been proven to deliver improved therapies are being standardized into clinical practice guidelines. These guidelines become evidence-based protocols that are indicated for the treatment of specific health conditions. They have been developed to assist practitioners in delivering appropriate health care for specific clinical circumstances. An increasing number of standard guidelines have been developed for use in nursing homes. Some of these same guidelines can also be used in other LTC settings such as home health and assisted living. Holistic Approach The holistic approach to health care delivery focuses not merely on a
person’s physical and mental needs but also on every aspect of what makes a person whole and complete. In this approach, a patient’s mental, social, and spiritual needs and preferences are incorporated into medical care delivery and all aspects of daily living. By its very nature, effective LTC is holistic. The following are brief descriptions of the four main aspects of holistic caregiving: 1. Physical. This refers to the technical aspects of care, such as medical examinations, nursing care, medications, diet, rehabilitation treatments, etc. It also includes comfort factors such as appropriate temperature, cozy furnishings, cleanliness, and safety in both home and institutional environments. 2. Mental. The emphasis is on the total mental and emotional well-being of an individual. Environmental and social support that reduce stress and anxiety can be instrumental in promoting mental well-being. 3. Social. Almost everyone enjoys warm friendships and social relationships. Visits from family, friends, or volunteers provide numerous opportunities for socializing. The social aspects of health care include companionship, information, counseling, and recreation. 4. Spiritual. The spiritual dimension includes personal beliefs, values, and commitments in a religious and faith context. Spirituality and spiritual pursuits are very personal matters, but for most people they also require continuing interaction with other members of the faith community. Maximizing Quality of Care Because of the multifaceted nature of LTC, quality of care can be achieved only with a multidisciplinary approach to caregiving. Quality of care is maximized when desirable clinical- and satisfaction-related outcomes have been achieved. Maximization of quality is an ongoing pursuit and is never fully achieved. Hence, maximizing quality requires a culture of continuous improvement. It requires a focus on the other nine dimensions encompassing the nature of LTC discussed in this section. To improve quality, regulatory standards as well as evidence-based clinical practice guidelines must be implemented. Quality must be evaluated or measured to discover areas
needing improvement, and processes should be changed as necessary. This becomes an ongoing effort. Maximizing Quality of Life Quality of life refers to the total living experience, which results in overall satisfaction with one’s life. Quality of life is a multifaceted concept that recognizes at least five factors: lifestyle pursuits, living environment, clinical palliation, human factors, and personal choices. Hence, quality of life can be enhanced by integrating these five factors into the delivery of care. 1. Lifestyle factors are associated with personal enrichment and making one’s life meaningful through activities one enjoys. For example, many residents in institutional settings may still enjoy pursuing their former leisure activities, such as woodworking, crocheting, knitting, gardening, and fishing. Many residents would like to engage in spiritual pursuits or spend some time alone. Even patients whose functioning has decreased to a vegetative or comatose state can be creatively engaged in something that promotes sensory awakening through visual, auditory, and tactile stimulation. 2. The living environment must be comfortable, safe, and appealing to the senses. Cleanliness, décor, furnishings, and other aesthetic features are critical. 3. Palliation should be available for relief from unpleasant symptoms such as pain or nausea. 4. Human factors refer to caregiver attitudes and practices that emphasize caring, compassion, and preservation of human dignity in the delivery of care. Institutionalized patients generally find it disconcerting to have lost their autonomy and independence. Quality of life is enhanced when residents have some latitude to govern their own lives. Residents also desire an environment that promotes privacy. 5. LTC institutions should make every effort to accommodate patients’ personal choices. For example, food is often the primary area of discontentment, which can be addressed by offering a selective menu. Many elderly resent being awakened early in the morning when nursing home staff begin their responsibilities to care for patients’ hygiene,
bathing, and grooming. Flexible schedules can be implemented to accommodate individual choices. The Elderly and Long-Term Care The elderly, people 65 years of age or older, are the primary clients of long- term care. As previously stated, a person’s age or the presence of chronic conditions by itself does not predict the need for long-term care. However, as a person ages, chronic ailments, comorbidity, disability, and dependency tend to follow each other. This progression is associated with increased probability that a person would need long-term care (Figure 1–2). The probability of having limitations in ADLs and IADLs increases significantly with age (Figure 1–3). In a broad sense, approximately one- third of the elderly have functional limitations of one kind or another; among those age 85 and older, two-thirds have functional limitations (Congressional Budget Office [CBO], 2013). According to the U.S. government’s website, http://www.longtermcare.gov, an estimated 70% of older Americans will eventually need some type of LTC, even though many may never leave their own homes. Surveys over time have shown that the vast majority of older Americans wish to stay in their own homes indefinitely. Hence, community- based services are preferred by most older people, and these services have grown more rapidly than LTC institutions. Severe declines in health, however, may necessitate institutional services, particularly for people who need care around the clock. In 2012, 44% of noninstitutionalized older persons assessed their own health as excellent or very good, compared to 64% for persons aged 18–64 years (Administration on Aging, 2013). It is reasonable to assume that the segment of the elderly population in fair to poor overall health is likely to require LTC at some point. Even for those in good or excellent health, short- term LTC may become necessary after an accident, surgery, or acute illness. Important differences in health exist according to population characteristics. Compared to whites, fewer elderly African-Americans, Hispanics, Asians, and American Indians/Alaska Natives rated their health as excellent or very good (Administration on Aging, 2013). Because the growing nonwhite elderly population is in poorer health, it is likely to face a
greater need for LTC services later in life. Social and cultural factors important to each group will present new challenges in the delivery of LTC services. Figure 1–2 Progressive Steps Toward the Need for Long-Term Care Among the Elderly Figure 1–3 Limitations in ADLs and IADLs Among Community-Dwelling Elderly
Reproduced from Congressional Budget Office. 2013. Rising demand for long-term services and supports for elderly people. Washington, DC: Congressional Budget Office. By 2050, 20% of the U.S. population will be elderly, up from 12% in 2000. The number of people age 85 and older will grow the fastest (CBO, 2013). Growth of the elderly population will bring a corresponding surge in the number of elderly people with functional and cognitive limitations. Thus, the need for LTC will increase sharply in coming decades. The rest of the developed world also faces aging-related problems and
challenges in providing adequate LTC services very similar to those in the United States. Actually, the elderly population as a proportion of the total population in other developed countries, such as Japan, Germany, France, and Great Britain, is already higher than it is in the United States. Aging of People with HIV/AIDS With the increased use of highly active antiretroviral therapy (HAART), AIDS (acquired immune deficiency syndrome) has evolved from an end- stage terminal illness into a chronic condition. With reduced mortality, the prevalence of HIV (human immunodeficiency virus) in the population has actually increased, including among the elderly. People over the age of 50 are not only aging with HIV infection, but also represent a high proportion of new HIV infections (Watkins & Treisman, 2012). For example, in 2007, almost 17% of new diagnoses of HIV were in individuals who were older than 50 years (Kearney et al., 2010). It is estimated that by 2015 half of all HIV-infected individuals in the United States will be over the age of 50 (Effros et al., 2008). Care of HIV/AIDS patients presents special challenges because this population has characteristics that are quite dissimilar to the rest of the LTC population. As HIV/AIDS patients age, they become susceptible to multiple comorbidities and cognitive impairment. Liver disease and cardiovascular disease are both associated with long-term use of HAART. HIV/AIDS patients are also at a high risk of developing various types of cancers, depression, dementia, and Alzheimer’s disease (Cahill & Valadéz, 2013), and have a significantly higher prevalence of weight loss and incontinence of bladder and bowel (Shin et al., 2002). Older people living with HIV report lower levels of physical ability and less independence compared with younger people (Pereira & Canavarro, 2011). These factors indicate a greater need of LTC services among people with HIV/AIDS. Many older adults living with HIV/AIDS are disconnected from traditional informal support networks and rely heavily on formal care providers (Shippey & Karpiak, 2005). HIV/AIDS patients have a variety of medical and social needs over time. Changing needs require transitions between community-based services, nursing homes, and hospitals.
The Long-Term Care Delivery System The LTC system is sometimes referred to as the continuum of long-term care, which means the full range of long-term care services that increase in the level of acuity and complexity from one end to the other—from informal and community-based services at one end of the continuum to the institutional system at the other end. Hence, the long-term care continuum has three major subsystems: • The informal system • The community-based system • The institutional system The first subsystem, informal care, is the largest, but it generally goes unrecognized. For the most part, it is not financed by insurance and public programs; it includes private-duty nursing arrangements between private individuals. The other two subsystems mostly have formalized payment mechanisms to pay for services. Although institutional management is the focus of this text, the other two subsystems, informal care and community-based service, also have important implications for administrators who manage LTC institutions. The community-based services and informal systems compete with the institutional system in some ways but are also complementary. The three subsystems that form the LTC continuum are illustrated in Figure 1–4. There are also different levels of institutional settings forming their own institutional continuum. Figure 1–4 The Continuum of Long-Term Care
Given the complexity of the LTC system, case management (also called care management) fills in a key role. Case management is a centralized coordinating function in which the special needs of LTC clients are identified and a trained professional determines which services would be most appropriate, determines eligibility for those services, makes referrals, arranges for financing, and coordinates and monitors delivery of care to ensure that clients are receiving the prescribed services. Case management helps link, manage, and coordinate services to meet the varied and changing health care needs, particularly for those who have complex medical issues, such as people with HIV/AIDS. Case management provides a single entry point for obtaining information about and accessing services. The extent of disability and personal needs primarily determine which services on the continuum may be best suited for an individual. However, client preferences, availability of community-based services, and ability to pay for services also
play a significant role. In recent years, numerous public and private health care organizations have proliferated—organizations that offer information to consumers on how to care for someone at home, how to find and pay for community-based services, and how to find an appropriate institutional setting. The Informal System Contrary to popular belief, most LTC services in the United States are provided informally by family, friends, and surrogates such as neighbors and members from church or other community organizations. For the most part, services rendered are of a basic nature, such as general supervision and monitoring, running errands, dispensing medications, cooking meals, assistance with eating, grooming and dressing, and, to a lesser extent, assistance with mobility and transfer. It is estimated that 92% of community-dwelling residents receive unpaid help (Kaye et al., 2010), from approximately 42 million informal caregivers in the United States (Feinberg et al., 2011). Family members also play an important role in managing the often critical transitions between settings of care delivery, such as between hospital and nursing home (Levine et al., 2010). Unpaid care is also the largest source of financing LTC; its estimated economic value in 2009 was $450 billion, up from $375 billion in 2007 (Feinberg et al., 2011). The extent of informal care that an individual receives is highly dependent on the extent of the support network the individual has. People with close family, friends, neighbors, or surrogates (such as members of a religious community) can often continue to live independently much longer than those who have little or no social support. Men, minorities, married individuals, and those with less education are more likely to receive care from family and friends and are less likely to receive care in a nursing facility (Alecxih, 2001). The pool of informal caregivers, in relation to the growing elderly population needing LTC, is going to shrink rather dramatically in the future. Various reports suggest that the number of older people who are divorced, unmarried, or without children has been on the rise. This trend has serious implications for the formal subsystems of LTC delivery.
The Community-Based System Community-based LTC consists of formal services provided by various health care agencies. These services can be categorized as intramural and extramural. Community-based LTC services have a fourfold objective: 1. To deliver LTC in the most economical and least restrictive setting whenever appropriate for the patient’s health care needs 2. To supplement informal caregiving when more advanced skills are needed than what family members or surrogates can provide to address the patients’ needs 3. To provide temporary respite to family members from caregiving stress 4. To delay or prevent institutionalization Intramural Services Intramural services are taken to patients who live in their own homes, either alone or with family. The most common intramural services include home health care and Meals On Wheels. Limited support programs that provide services such as homemaker, chores and errands, and handyman assistance also exist, but the funding to pay for such services is not well established and varies from community to community. Home health care brings services such as nursing care and rehabilitation therapies to patients in their own homes because such patients do not need to be in an institution yet and are generally unable to leave their homes safely to get the care they need. Extramural Services Extramural services are community-based services that are delivered outside a patient’s home. They require that patients come and receive the services at a community-based location. This category mainly includes services such as adult day care, mental health outpatient clinics, and congregate meals provided at senior centers. Respite care is another type of service that can be classified as extramural. Adult day care enables a person to live with family but receive professional services in a daytime program in which nursing care,
rehabilitation therapies, supervision, and social activities are available. Adult day care centers generally operate programs during normal business hours 5 days a week. Some programs also offer services in the evenings and on weekends. Senior centers are local community centers where seniors can congregate and socialize. Many centers offer a daily meal. Others sponsor wellness programs, health education, counseling services, information and referral, and some limited health care services. Respite care can include any kind of LTC service (adult day care, home health, or temporary institutionalization) when it allows family caregivers to take time off while the patient’s care is taken over by the respite care provider. It allows family members to get away for a vacation or deal with other personal situations without neglecting the patient. The Institutional System Institutional LTC is more appropriate for patients whose needs cannot be adequately met in a community-based setting. Apart from a patient’s clinical condition, factors such as inability to live alone or lack of social support may suggest a need to be in an institution. The institutional sector of LTC offers a continuum of services according to the patient’s level of dependency for care. Facilities within the institutional continuum range from independent living facilities or retirement centers at one extreme to subacute care and specialized care facilities at the other extreme (see the lower section of Figure 1–4). On the basis of the level of services they provide, institutional LTC facilities may be classified under six distinct categories (facilities in the first two categories may be referred to as quasi institutions): • Independent or retirement living • Residential or personal care • Assisted living • Skilled nursing • Subacute care • Specialized care For most people, the array of facilities that often go by different names can be remarkably confusing. This is particularly true because distinctions
between some of them can be blurry. For example, what is defined as board- and-care (i.e., residential and personal care) in one state may be called assisted living in another. This is because services provided by these facilities can overlap. Brief descriptions of these facilities follow. Independent or Retirement Housing Independent housing units and retirement living centers are not LTC institutions in the true sense because they are meant for people who can manage their own care. These residences do not deliver clinical care but emphasize privacy, security, and independence. Their special features and amenities are designed to create a physically supportive environment to promote an independent lifestyle. For example, the living quarters are equipped with emergency call systems. Bathrooms have safety grab bars. Rooms are furnished with kitchenettes. Congregate housing units have handrails in the hallways for stability while walking. Other housing units offer detached cottages with individual garages that allow residents to come and go as they please. Hotel services such as meals, housekeeping, and laundry may or may not be available. Residential or Personal Care Homes Facilities in this category go by different names such as domiciliary care facilities, adult care facilities, board-and-care homes, and foster care homes. In addition to providing a physically supportive environment, these facilities generally provide light assistive care such as medication use management and assistance with bathing and grooming. Other basic services such as meals, housekeeping, laundry, and social and recreational activities are also generally included. Because personal care homes are located in residential neighborhoods, they are sometimes regarded as a community-based rather than an institutional service. Assisted Living Facilities An assisted living facility (ALF) provides personal care, 24-hour supervision, social services, recreational activities, and some nursing and rehabilitation services. These facilities are appropriate for people who cannot function independently but do not require skilled nursing care. However,
ALFs are increasingly offering services for Alzheimer’s/dementia care (Hoban, 2013). To emphasize a residential environment, ALFs generally have private accommodations, as opposed to semi-private, which is common in skilled nursing facilities. The typical assisted living resident is female, 87 years old, mobile, but needing assistance with two to three ADLs. The majority of these residents transfer from their homes. Approximately, 59% eventually move into a skilled nursing facility and one-third pass away (National Center for Assisted Living, 2013). Skilled Nursing Facilities These are the typical nursing homes at the higher end of the institutional continuum. Compared with the types of residences discussed earlier, the environment in skilled nursing facilities is more institutionalized and clinical. Yet, many facilities have implemented creative ideas in layout and design to make their living environments as pleasant and homelike as practicable. These facilities employ full-time administrators who must understand the varied concepts of clinical and social care and have been trained in management and leadership skills. The facility must be adequately equipped to care for patients who require a high level of nursing services and medical oversight, yet the quality of life must be maximized. A variety of disabilities —including problems with ambulation, incontinence, and behavioral episodes—often coexist among a relatively large number of patients. Compared with other types of facilities, nursing homes have a significant number of patients who are cognitively impaired, suffer from other mental ailments such as depression, and have physical disabilities and conditions that often require professional intervention. The social functioning of many of these patients has also severely declined. Hence, the nursing home setting presents quite a challenge to administrators in the integration of medical care, mental health services, and social support. Subacute Care Facilities Subacute care, defined earlier, has become a substitute for services that were previously provided in acute care hospitals. It has grown because it is a cheaper alternative to a hospital stay. Early discharge from acute care
hospitals has resulted in a population that has greater medical needs than what skilled care facilities were earlier able to provide. Specialized Care Facilities Some nursing homes have opened specialized care units for patients requiring ventilator care, treatment of Alzheimer’s disease, intensive rehabilitation, or closed head trauma care. Other specialized facilities include intermediate care facilities for individuals with intellectual disabilities (ICFs/IID), previously known as intermediate care facilities for the mentally retarded (ICF/MR). The key distinguishing feature of the latter institutions is specialized programming and care modules for patients suffering from mental retardation and associated disabilities. Long-Term Care and Complementary Services Services within the broader health care delivery system are often needed by long-term care patients. Hence, care coordination between the two systems —long-term care and non–long-term care—is often necessary to meet a patient’s total care needs. As an example, a person living at home may undergo partial mastectomy for breast cancer, return home under the care of a home health agency, require hip surgery after a fall in the home, and subsequently be admitted to a skilled nursing facility for rehabilitation. This individual will need recuperation, physical therapy, chemotherapy, and follow-up visits to the oncologist. Once she is able to walk with assistance and her overall condition is stabilized, she may wish to be moved to an assisted living facility. Depending on the change in condition and functioning, the patient may move between the various levels and types of LTC services and may also need transferring between LTC and non-LTC services. The following are the main non-LTC services that are complementary to long-term care: • Primary care, which is defined as medical care that is basic, routine, coordinated, and continuous over time. It is delivered mainly by community-based physicians. It can also be rendered by midlevel
providers such as physician’s assistants or nurse practitioners. Primary care is brought to the patients who reside in nursing homes, whereas those residing in less institutionalized settings such as retirement living communities or personal care homes commonly visit the primary care physician’s office. • Mental health care delivered by community-based mental-health outpatient clinics and psychiatric inpatient hospitals. • Specialty care delivered by community-based physicians in specialty practices, such as cardiology, ophthalmology, dermatology, or oncology. Certain services are also delivered by freestanding chemotherapy, radiation, and dialysis centers. Other services are provided by dentists, optometrists, opticians, podiatrists, chiropractors, and audiologists in community-based clinics or mobile units that can be brought to a long- term care facility. • Acute care delivered by hospitals and outpatient surgery centers. Acute episodes in a LTC setting require transfer of the patient to a hospital by ambulance. • Diagnostic and health screening services offered by hospitals, community-based clinics, or mobile medical services. Some common types of services brought to LTC facilities include preventive dentistry, X-ray, and optometric care. Terminology for Review activities of daily living adult day care Alzheimer’s disease case management chronic conditions clinical practice guidelines cognitive impairment comorbidity continuum of long-term care dementia
developmental disability elderly end-of-life care evidence-based care extramural services holistic approach home health care hospice hotel services instrumental activities of daily living intellectual disability intramural services long-term care palliation primary care quality of care quality of life respite care senior centers skilled nursing care social support subacute care support services supportive housing tertiary prevention total care For Further Thought 1. How does long-term care differ from other types of medical services? 2. For nursing home residents, dignity and privacy issues are often more
important than clinical quality. Identify some staff practices that will promote an individual’s privacy and dignity. (Think about how you would like to be treated by caregivers.) Case Can Mrs. Klausman Stay in Assisted Living? Contributed by Katie Ehlman, PhD, CHES, HFA; Elizabeth Ramos, MS, RD, CD; Julie McCullough, PhD, RD; and Mary Kay Arvin, OTD, OTR, CHT, College of Nursing and Health Professions, University of Southern Indiana. Mrs. Klausman is a 92-year-old resident in an assisted living facility. She has mild cognitive impairment and needs help with bathing and medication administration. Because of progressive arthritis, she is having difficulty eating. The silverware slips out of her hands and falls to the floor so that staff members must keep replacing it. Mrs. Klausman becomes visibly frustrated and embarrassed. The food service manager and the administrator decide to meet with Mrs. Klausman’s daughter, and recommend that the family should hire a home care provider to assist Mrs. Klausman at mealtimes. The facility does not have staff resources to feed residents. The resident’s daughter is thinking whether a skilled nursing facility would be more appropriate for her mother. Questions 1. Identify and evaluate Mrs. Klausman’s deficit in self-feeding from different perspectives on what long-term care consists of. 2. Should Mrs. Klausman be transferred to a skilled nursing facility? Explain. 3. Is hiring a homemaker appropriate? Why or why not? What do you suggest?
FOR FURTHER LEARNING Administration on Aging: A federal agency established under the Older Americans Act. http://www.aoa.gov/ Family Caregiver Alliance: A nonprofit organization set up to provide information and resources to address the needs of families and friends providing long-term care at home. http://www.caregiver.org The George Washington Institute for Spirituality and Health: Affiliated with the George Washington University, the Institute is a leading organization on educational and clinical issues related to spirituality and health. http://smhs.gwu.edu/gwish The Meals On Wheels Association of America: This organization represents those who provide congregate and home-delivered meal services to people in need. http://www.mowaa.org National Council on Aging: A private, nonprofit organization providing information, training, technical assistance, advocacy, and leadership in all aspects of care for the elderly. http://www.ncoa.org National Institute of Mental Health: A government agency under the U.S. Department of Health and Human Services. The agency engages in education and research in all aspects of mental health and mental illness. http://www.nimh.nih.gov/index.shtml REFERENCES Administration on Aging. (2013). A profile of older Americans: 2012. Retrieved August 2013 from http://www.aoa.gov/AoARoot/Aging_Statistics/Profile/2012/14.aspx. Alecxih, L. (2001). The impact of sociodemographic change on the future of long-term care. Generations, 25(1), 7–11. Boyle, C. A. et al. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127(6), 1034–1042.
Cahill, S., & Valadéz, R. (2013). Growing older with HIV/AIDS: New public health challenges. American Journal of Public Health, 103(3), e7– e15. Congressional Budget Office (CBO). (2013). Rising demand for long-term services and supports for elderly people. Washington, DC: Congressional Budget Office. Effros, R. B. et al. (2008). Workshop on HIV infection and aging: What is known and future research directions. Clinical Infectious Diseases, 47(4), 542–553. Feinberg, L. et al. (2011). Valuing the invaluable: 2011 update—the growing contributions and costs of family caregiving. AARP Public Policy Institute. Retrieved August 2013 from http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf. Harris-Kojetin, L. et al. (2013). Long-term care services in the United States: 2013 overview. Hyattsville, MD: National Center for Health Statistics. Helmer, C. et al. (2006). Dementia in subjects aged 75 years or over within the PAQUID cohort: prevalence and burden by severity. Dementia and Geriatric Cognitive Disorders, 22(2), 87–94. Hoban, S. (2013). Assisted living 2013: On the upswing. Long-Term Living: For the Continuing Care Professional, 62(3), 28–30. Hurd, M. D. et al. (2013). Monetary costs of dementia in the United States. New England Journal of Medicine, 368(14), 1326–1334. Kaye, H. S. et al. (2010). Long-term care: Who gets it, who provides it, who pays, and how much? Health Affairs, 29(1), 11–21. Kearney, F. et al. (2010). The ageing of HIV: Implications for geriatric medicine. Age and Ageing, 39(5), 536–541. Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: Self- maintaining and instrumental activities of daily living. Gerontology, 9, 179–186. Levine, C. et al. (2010). Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs, 29(1), 116–124.
McLeod, B.W. (2002). And thou shalt honor: The caregiver’s companion. Wiland-Bell Productions, distributed by Rodale at http://www.rodalestore.com. Morley, J. E. (2012). High technology coming to a nursing home near you. Journal of the American Medical Directors Association, 13(5), 409–412. National Center for Assisted Living. (2013). Resident profile. Retrieved August 2013 from http://www.ahcancal.org/ncal/resources/Pages/ResidentProfile.aspx. National Institute of Mental Health. (2007). Older adults: Depression and suicide facts. Retrieved September 2008 from http://www.nimh.nih.gov/health/publications/older-adults-depression- and-suicide-facts.shtml. Pereira, M., & Canavarro, M. C. (2011). Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behavior, 15(8), 1857–1869. Prince, M. et al. (2013). World Alzheimer report 2013. London, UK: Alzheimer’s Disease International. Robinson, K. M. (2010). Policy issues in mental health among the elderly. Nursing Clinics of North America, 45(4), 627–634. Shin, J. K. et al. (2002). Quality of care measurement in nursing home AIDS care: A pilot study. Journal of the Association of Nurses in AIDS Care, 13(2), 70–76. Shippey, R. A., & Karpiak, S. E. (2005). Perceptions of support among older adults with HIV. Research on Aging, 27(3), 290–306. Tabert, M. H. et al. (2002). Functional deficits in patients with mild cognitive impairments: Prediction of AD. Neurology, 58, 758–764. Watkins, C. C., & Treisman, G. J. (2012). Neuropsychiatric complications of aging with HIV. Journal of Neurovirology, 18(4), 277–290.
Chapter 2 Long-Term Care Policy: Past, Present, and Future What You Will Learn • Decisions made by the government in the form of policy can affect numerous groups and classes of individuals. Strategic decisions made in private organizations may also hinge on public policy. • Public policy can take many different forms. Policies can come from all three branches of government. • In the United States, long-term care policy and general welfare have been closely intertwined. The Social Security Act of 1935 and the creation of Medicare and Medicaid in 1965 were landmark policies that indirectly started a nursing home industry that has remained mostly private. Regulation of the industry soon followed. • Quality of care issues in nursing homes took center stage during the 1980s. The Nursing Home Reform Act of 1987 provides current nursing home regulations dealing with patient care, but the regulations also have some serious drawbacks. • Most of the current activity in long-term care policy has been
directed toward moving people out of nursing homes into the community. • The complex interaction of financing, access, utilization, and expenditures is critical to current and future long-term care policy. • Future policy initiatives are necessary in the areas of prevention, financing, workforce development, health information systems, mental health, and evidence-based practices. Introduction Long-term care (LTC) policy is a subset of broader health policies that fall within the domain of public policy. Public policy refers to decisions made and actions taken by the government that are intended to address current and potential issues that the government believes are in the best interest of the public. As with other types of decisions, policy is intended to accomplish certain defined purposes. When the intended goals of public policy pertain to health care, the government’s decisions and actions are referred to as health policy. Health policies affect groups or classes of individuals, such as physicians, the poor, the elderly, or children. They can also affect various types of organizations, such as medical schools, managed care organizations, hospitals, manufacturers of medical technology, or employers in the American industry. The Affordable Care Act (2010),1 also known as Obamacare, is a prime example of a major health policy that also extends into the broader domain of public policy because of its tax consequences on individuals and businesses. LTC policy is specifically crafted to address issues pertaining to access, financing, delivery, quality, and efficiency of LTC services. These policies particularly affect the recipients of services such as the elderly or disabled; provider organizations such as nursing homes, home health agencies, and senior centers; caregivers such as physicians and certified nursing assistants; managers such as nursing home administrators; and manufacturers and purveyors of technology and medical supplies. Policy may be made at the national, state, or local level of government.
For example, national building and fire safety codes govern the construction, design, and safety features for LTC facilities. State policies govern licensure of facilities and health care professionals. States also establish guidelines that insurance companies must follow in the design and sale of LTC insurance. Local governments establish zoning laws specifying where LTC facilities may be built. The term policy is also sometimes used in the context of private policy. More appropriately, however, private policies are strategic decisions that senior managers in private organizations make to better serve their markets. For example, the increased prevalence of dementia among the elderly has prompted the growth of specialized Alzheimer’s care facilities in response to a rising market demand. In the health care sector, public policy is often an important consideration when private organizations make strategic decisions. For example, a strategic decision by a skilled nursing facility to convert some of its beds to deliver subacute care may be driven by a public policy to increase reimbursement for subacute care. Hence, in addition to market demand factors, policy considerations can play a critical role in strategic decisions. Types of Policy Commonly, policy takes the form of laws passed by legislative bodies such as the U.S. Congress or state legislatures. Administrative bodies, such as the Centers for Medicare and Medicaid Services (CMS) or state health boards, interpret the legislation and formulate rules and regulations to implement the laws. Thus, in the process of interpretation and implementation of laws, administrative bodies also end up creating policy. The term policymakers is generally applied to legislators and decision makers in regulatory agencies who become actively involved in crafting laws and regulations to address health care issues. The two sources of policymaking just mentioned are the most common. Less frequently, certain decisions rendered by the courts and executive orders issued by the President of the United States or state governors also become policy. The president often plays an important role in policymaking by generating support of his agenda in Congress, by appealing to the American people as to why certain issues are important, and by proposing legislation for Congress to act on. Hence, all three branches of
government—legislative, judicial, and executive—can make policy. The executive and legislative branches can establish health policies; the judicial branch can uphold, strike down, or modify existing laws affecting health care. Examples in all three areas follow. Legislation contained in the Balanced Budget Act of 1997 required Medicare to develop a prospective payment system (PPS) to reimburse skilled nursing facilities. This legislative policy triggered several rounds of policymaking. First, the Health Care Financing Administration (now called Centers for Medicare and Medicaid Services) developed and implemented a new payment methodology in 1998. Subsequently, to address concerns from nursing home operators, Congress instituted a series of temporary payment increases through two pieces of legislation—the Balanced Budget Refinement Act of 1999 and the Medicare, Medicaid, and State Children’s Health Insurance Program (SCHIP) Benefits Improvement and Protection Act of 2000 (MedPAC, 2002). A 1999 decision by the U.S. Supreme Court in Olmstead v. L.C. directed states to provide community-based services for persons with disabilities— including persons with developmental disabilities, persons with physical disabilities, persons with mental illness, and the elderly—when such services were determined to be appropriate by professionals responsible for rendering health care to these people. In 2012, the U.S. Supreme Court upheld part of the Affordable Care Act to be constitutional, but also ruled that the federal government could not coerce the states into expanding their existing Medicaid programs as required by the act. The 2004 Executive Order 13335 provided incentives for the use of health information technology (HIT) and established the position of a National Health Information Technology Coordinator. One of the main objectives of this executive order was to develop a nationwide HIT infrastructure that would allow a patient’s electronic health records to be portable and available to different health care providers (i.e., make electronic health records interoperable). These examples illustrate that public policy can take many different forms that can have far-reaching consequences. When policies require that certain individuals or organizations perform or behave in a certain manner, the policies carry the force of law. Violations can result in various kinds of penalties that can include monetary fines, withholding of payments by the
government, and prison terms for criminal offences. Long-Term Care Policy: Historical Perspectives Policy evolution in the United States did not progress according to some planned design. This follows the general pattern of American health policymaking. Health care policymaking has followed an ad hoc approach to incrementally address issues as they have cropped up. LTC policies in the United States had three major effects: 1. The government became the largest payer for services provided by nursing homes. This encouraged the growth of a private nursing home industry. 2. The government implemented policies to regulate nursing homes. 3. For several decades, long-term care policy actually promoted institutionalization because there was little financial incentive to develop community-based services. As rising costs put strains on federal and state budgets, it was not until the 1980s that policies promoting community-based services were crafted. Welfare Policies and Long-Term Care The history of LTC policy in the United States goes back to the building of poorhouses in the late 17th century. A poorhouse (or almshouse) was a government-operated institution during colonial and postcolonial times where the destitute of society, including the elderly, the homeless, the orphan, the ill, and the disabled, were given food and shelter, and conditions were often squalid. The first poorhouse in the United States is recorded to have opened in 1660 in Boston (Wagner, 2005, p. 10). The poorhouse program was adopted from the Elizabethan system of public charity based on English Poor Laws. In the United States, cities, counties, and states operated these facilities, which were often located on farms and, hence, also referred to as poor farms. The poorhouses were part of a very limited public relief system that was financed mainly by local governments. These facilities admitted poor and needy persons of all kinds, including those released from
prison and the ill who did not have family or relatives to take care of them. In response to the growing concerns about abuse and squalid living conditions, some states created state-run Boards of Charities in the mid- 1800s to oversee and report on the local poorhouse operations. The boards’ efforts led to some improvement in living conditions and to separation of the insane from the sane and the dependent elderly from the able bodied (Stevenson, 2007). The tireless efforts of Dorothea Lynde Dix (1802–1887), a social reformer, were particularly instrumental in convincing Massachusetts’ legislature to pass laws that would put the mentally ill in separate facilities. Between 1894 and World War I, the State Care Acts were passed. Each state built its own mental asylum and took financial responsibility for the care of mentally ill patients. These reform efforts even spread abroad to Canada and Europe. Passage of the Social Security Act in 1935 was a landmark piece of legislation. The elderly were particularly hard hit during the Great Depression as many of them saw their lifetime savings disappear. Hence, the federal government specifically addressed the needs of America’s elderly. Simultaneously, deplorable conditions fueled a reform movement to move people out of poorhouses. An Old Age Assistance (OAA) program was included in the Social Security Act. The OAA program made federal money available to the states to provide financial assistance to needy elderly persons. For the fiscal year that ended on June 30, 1936, Congress authorized the sum of $49,750,000 under Title I of the act in the form of matching grants, meaning the states participating in the program would share in the total cost of the program (Social Security Administration, n.d.). The new law purposely prohibited payments to anyone living in a public institution (i.e., a poorhouse), and was instrumental in putting an end to the poorhouse system (Wagner, 2005, pp. 132–133). An unintended side effect of this policy, however, was that it started a private for-profit nursing home industry in the United States because many elderly now were able to pay for services in privately run homes for the aged and boarding homes (Eustis et al., 1984, p. 17). Private nonprofit homes for the aged did not grow at the same rate as for-profit homes because the nonprofit facilities were established to care for members of particular religious, ethnic, or fraternal groups and thus restricted whom they would admit (Doty, 1996). The Hospital Survey and Construction Act of 1946, commonly known as the Hill-Burton Act, provided federal funds to states for the construction of
new hospital beds. An unplanned result of the Hill-Burton legislation was that many of the old hospitals that were being replaced were converted to nursing homes (Stevenson, 2007). Policies during the 1950s provided federal funds for the construction of nursing homes while, at the same time, OAA payments were increased and a 1950 Social Security Amendment required payments for medical care to be made directly to nursing homes rather than to the recipients of care. By public policy, nursing homes now became recognized as institutions of medical care rather than social welfare. Nursing homes could now contract directly with the state governments and get reimbursed for services delivered to the elderly poor. Also, at this time, nursing homes were required to be licensed by the states. The legislation contained no specific standards for licensure; hence, each state set its own rules (Phillips, 1996). It is estimated that by 1960 there were over 10,000 nursing homes with 400,000 beds in the United States (Vladeck, 1980). Financing and Growth of Nursing Homes The creation of Medicare and Medicaid in 1965 as Title 18 and Title 19 amendments, respectively, to the Social Security Act brought about the most transforming changes in the American health care landscape. Medicare and Medicaid are two major public health insurance programs. Medicare covers health care services for the elderly, certain disabled people, and those who have end-stage renal disease (kidney failure). Medicaid covers health care services for the poor. With the creation of Medicare and Medicaid, LTC became more fully integrated into the U.S. health care delivery system. Also, the federal and state governments became the largest payers for LTC services, and the politics of long-term nursing home care took root. Medicare and Medicaid funding for nursing homes also attracted Wall Street investors and real estate developers to a fast-growing nursing home industry dominated by chains— that is, multifacility systems that own and operate nursing homes in several states (Hawes et al., 2007). Medicare and Medicaid policies favored payments to nursing homes that lawmakers could regulate rather than payments for community-based services that would be difficult to regulate. These policies led to the institutionalization of a large number of people, many of whom did not need to be in nursing homes.
Nursing home utilization and government expenditures exploded shortly after Medicare and Medicaid went into effect. The massive infusion of dollars into the nursing home industry, which had already acquired a tarnished image, prompted regulations to hold individual nursing homes accountable for meeting minimum standards of care. In 1968, Congress passed legislation, commonly known as the Moss Amendments (named after Senator Frank Moss) that paved the way for comprehensive regulations to improve care in the nation’s nursing homes. It was not until 1974, however, that regulations for skilled nursing facilities were finalized, and their enforcement began in earnest. Compliance with standards, known as conditions of participation, in areas such as staffing levels, staff qualifications, fire safety, and delivery of services now became a requirement for participation in the Medicare and Medicaid programs. Later, these regulations were widely criticized that they concentrated on a facility’s capacity to give care, not on the quality of services actually delivered (U.S. Department of Health, Education, and Welfare, 1975). Interestingly, licensing of health care professionals and hospitals was initiated by the professionals themselves and by hospitals, respectively. In contrast, licensing of nursing homes and of nursing home administrators (NHAs) came about through federal laws. As mentioned earlier, the 1950 amendments to the Social Security Act required that states license nursing homes in order to participate in the OAA program. Licensing of NHAs was a major exception to the general trend of requests from professionals that anyone practicing in their respective professions be licensed. The demand for qualified persons to manage nursing homes was not initiated by the industry but came about as a result of public outcry over lapses in care. As a result, the 1967 amendments to the Social Security Act included a provision that, for states to participate in the Medicaid program, they had to pass laws to govern the licensing of NHAs. In contrast, hospital administrators were not required to be licensed. One key characteristic of licensure is that it is a responsibility of each state, not the federal government. Licensure by the state permits an institution to begin and continue operations and health care professionals to begin and continue to practice (Eustis et al., 1984, pp. 143– 145). Policies Favoring Community-Based Services
Social Security amendments in 1974 authorized federal grants to states for various types of social services. These programs included protective services, homemaker services, transportation services, adult day care, training for employment, information and referral, nutrition assistance, and health support (Lee, 2004). The Social Security Amendment of 1975 created Title 20, which consolidated the federal assistance to states for social services into a single grant. Under Title 20, one of the goals for the states was to prevent or reduce “inappropriate institutional care by providing for community-based care, home-based care, or other forms of less intensive care.” In 1981, Title 20 was amended to create Social Services Block Grants. The single block grants actually reduced federal funding to the states for social services. Also, Title 20 covered services for all ages, not just the elderly. Consequently, block grants have provided relatively little money for LTC services. Also in 1981, the Home- and Community-Based Services waiver program was enacted under Section 1915(c) of the Social Security Act. The 1915(c) waivers, as they are commonly called, allow states to offer LTC services that are not otherwise available through the Medicaid program, which had authorized payments for institutional care only. The waivers have been particularly successful, and states have increasingly used them to expand community-based LTC services, thus saving money on institutional care. Deregulation Averted In the early 1980s, nursing home regulations came under the broader sweep to deregulate the industry and downsize the federal bureaucracy. Rumors leaked out that a task force on regulatory reform in the Reagan administration was planning to downgrade sanitation standards, eliminate staff development requirements, reduce physician visits, delete medical director requirements, reduce social work programs, and ignore certain staff qualifications (Trocchio, 1984). Various interest groups such as consumer advocates and professional associations representing medical directors, social workers, and activity personnel lobbied Congress. In the end, interest group politics and congressional opposition derailed any attempts to deregulate the nursing home industry.
Legislation to Address Quality Issues The nursing home industry remained fraught with scandals about substandard quality of care and an ineffective regulatory system to enforce compliance with standards. At the request of Congress, the Institute of Medicine (IOM) conducted a comprehensive study that culminated in a scathing report on the state of nursing homes in the United States. The study found that residents of nursing homes were being abused, neglected, and given inadequate care. Sweeping reforms were proposed (IOM, 1986). The IOM’s prestige lent scientific credibility to its recommendations, and the report triggered the most comprehensive revision of the federal standards, inspection process, and enforcement mechanism for nursing homes since the creation of Medicare and Medicaid in 1965 (Hawes et al., 2007). National organizations representing consumers, nursing homes, and health care professionals worked together to create consensus positions on major nursing home issues and presented them before Congress. Their consensus positions on most IOM recommendations laid the foundation for a new federal law (Turnham, 2001). Although the IOM report has been widely credited to be the impetus for the Nursing Home Reform Act of 1987, it has also been observed that the Estate of Smith v. Heckler (1984) class-action lawsuit in Colorado may have played a role. The suit was brought on behalf of all the Medicaid beneficiaries in the state’s nursing homes. In essence, the suit charged that the constitutional rights of the nursing home residents were violated because the federal and state governments failed to enforce its laws and regulations. The district court judge, Richard T. Matsch, ruled against the plaintiffs, but his decision was later overturned on appeal. The appeals court ruled that the Secretary of the Department of Health and Human Services (DHHS) did have a duty to establish a system that could determine whether a nursing facility was providing the high-quality care required by the Social Security Act (Phillips, 1996, pp. 10–14). In 1987, President Reagan signed into law the Omnibus Budget Reconciliation Act of 1987 (OBRA-87), which contained the Nursing Home Reform Act. OBRA-87 brought enormous changes to nursing home operations. The most important provisions of the law are summarized as follows (Castle, 2001; Turnham, 2001): • Emphasis on residents’ quality of life as well as quality of care
• New expectations that each resident’s ability to walk, bathe, and perform other activities of daily living will be maintained or improved absent medical reasons • A resident assessment process leading to development of an individualized care plan • 75 hours of training and testing for nursing assistants • Right to remain in the nursing home absent nonpayment, dangerous resident behaviors, or significant changes in a resident’s medical condition • Procurement of services both inside and outside a nursing home to address the needs of residents with mental retardation or mental illnesses • Right to safely maintain or bank personal funds with the nursing home • Right to return to the nursing home after a hospital stay or an overnight visit with family and friends • Right to choose a personal physician and to access one’s own medical records • Right to organize and participate in a resident or family council • Access to an ombudsman to resolve disputes and grievances • Right to be free of unnecessary and inappropriate physical and chemical restraints • New remedies to be applied to certified nursing homes that fail to meet minimum federal standards OBRA-87 also changed the way state inspectors approached nursing home inspections. Inspectors were to no longer spend their time exclusively with staff or with facility records, as was the case in the past. Conversations with residents and families and observation of dining and medication administration became critical steps in the inspection process (Turnham, 2001). Ironically, OBRA-87 reforms were nearly repealed in 1995 as part of a larger attempt to reform Medicaid. This time, part of the nursing home industry supported repeal of the OBRA reforms, particularly the enforcement provisions. But consumer advocates, aided by researchers, were able to use empirical evidence that OBRA had produced positive outcomes. Once consumer advocates redefined the issue as one of quality of care, Congress
opposed the repeal of the Nursing Home Reform Act (Hawes et al., 2007). OBRA-87 altered the regulatory landscape in a significant way. Even though substantial funds were allocated to carry out the legislative mandate, it was a complex piece of legislation, and numerous hurdles were encountered in developing regulations. The final rules were published at the end of 1994 to be effective in July 1995, more than 8 years after the law had been passed (Phillips, 1996, p. 35). Policies to Regulate Other Services It is interesting to note that although the nursing home industry has been under the spotlight from federal policymakers for more than half a century now, the same policymakers have shown little interest in the assisted living industry. The latter has been one of the fastest growing areas of LTC delivery in recent years, and the aging-in-place philosophy has raised the level of clinical acuity of residents in these facilities. The absence of direct federal reimbursement to assisted living facilities is perhaps the reason any federal regulatory oversight is unlikely, unless at some point crises and failure of care similar to those encountered during the long history of nursing homes become apparent (Edelman, 2003). Most regulatory efforts for assisted living facilities have occurred at the state level; all states now require licensing of assisted living facilities. State regulations for adult day care centers vary. Medicaid-funded adult day care services must meet applicable state licensing and regulatory requirements such as minimum staff-to-participant ratios. The majority of states have also instituted inspections (O’Keeffe & Siebenaler, 2006). A 1988 court ruling on a class-action lawsuit, Duggan v. Bowen, opened up broad access to Medicare-covered home health services, and for some time, home health care had become the fastest growing service in the United States. In August 1997, Congress enacted the Balanced Budget Act (BBA) of 1997, which mandated that Medicare’s cost-based retrospective reimbursement policy for home health agencies as well as skilled nursing facilities be replaced by a prospective payment system (PPS). This policy was part of a broader financial reform to slow down the growth of Medicare spending. A prospective reimbursement method for skilled nursing facilities was implemented in July 1998 and a home health PPS reimbursement was implemented in October 2000.
In 2001, President George W. Bush announced the New Freedom Initiative and signed Executive Order 13217 to expedite the implementation of the Supreme Court’s ruling in Olmstead v. L.C. that required individuals with disabilities to have community living options. The Deficit Reduction Act of 2005 authorized the Money Follows the Person program. It was a 5-year demonstration project that provided $1.75 billion in federal grants between 2007 and 2011 to the states to help strengthen their Medicaid programs to move people out of nursing homes into the community. Under this program, when a person transfers from a nursing home to the community, funds that had previously paid for nursing home care are transferred to community-based services for that person. By the end of 2010, almost 12,000 people nationwide had transitioned to the community (Denny-Brown et al., 2011). This program experienced a slow start, but, as discussed in the next section, it has been bolstered through additional federal funding. Current State of Long-Term Care Policy Public policy in long-term care has evolved in three main directions: financing, utilization, and quality; all three go hand in hand. Utilization is the actual use of health care that occurs when people needing services have access to them. Access is the ability of a person needing services to obtain those services. Two main factors drive access: financing and availability of services. If financing (i.e., the ability to pay for services) is adequate but availability is limited, the services get rationed and access is restricted. On the other hand, if services are available but financing is not, access becomes restricted for those who cannot afford the services. Also, increased utilization affects financing negatively as total expenditures rise. Reduced levels of financing, however, affect quality negatively. Financing Financing is the means by which patients pay for the services they receive. Financing varies by the type of service, and there can be different sources of financing even for the same service. For example, care in a skilled nursing facility can be financed through Medicaid, Medicare, private insurance,
Veterans Health Administration, or one’s own personal funds. Hence, LTC financing is quite fragmented because no single source can be tapped to pay for services. Consequently, access and utilization become uneven. People face financial obstacles in a system that is complex and nonintegrated. For example, middle-income people who require nursing home care for a long period of time can face a financing nightmare. Medicare pays only for postacute short-term stays, and Medicaid requires people to exhaust their financial resources to become eligible. Many elders who do not qualify for either program have to pay on a private basis either through private LTC insurance or out of personal savings. Shift in Financing to Favor Community-Based Care Medicaid remains the largest source of financing LTC services. In 2011, 40% of the $357 billion spent nationally on all types of LTC services was attributed to Medicaid (Kaiser Commission on Medicaid and the Uninsured, 2013). Today, all states provide 1915(c) waiver services to the elderly, working- age people with disabilities, and those with developmental disabilities. In addition, 44 states and the District of Columbia participate in Money Follows the Person program. As Figure 2–1 illustrates, total Medicaid expenditures between 2006 and 2011 increasingly shifted from financing nursing home care to home- and community-based services (HCBS) so that in 2011 Medicaid spent 23% more on HCBS than on nursing home care. To date Money Follows the Person program remains far less effective than 1915(c) waivers. The former accounted for less than .05% of Medicaid spending on HCBS in 2011, whereas 1915(c) waivers accounted for 59% (Eiken et al., 2013). An insufficient supply of appropriate and affordable housing has been cited as the most common problem in transitioning people under Money Follows the Person (Denny-Brown et al., 2011). Nevertheless, the Affordable Care Act has expanded the program for another 5 years through 2016 and appropriated $2.25 billion in grants to the states (CMS, 2014). The Affordable Care Act also created a new program, Community First Choice. Under this program, states have the option to provide home- and community-based attendant services and supports. A 6% increase in the federal matching payments under Medicaid is available to the states to
implement this program. Figure 2–1 Trends in Medicaid Expenditures for Nursing Homes and HCBS, 2006–2011 Data from Eiken, S. et al. (2013). Medicaid expenditures for long term services and supports in 2011. Washington, DC: Centers for Medicare and Medicaid Services. There is some evidence that services received under HCBS waivers result in cost savings over receiving care in a nursing home (Shapiro et al., 2011). Conversely, when HCBS programs are cut back the overall LTC costs to states increase (Howes, 2010). Further evidence shows that the amount of services received by individuals in community-based settings is important for reducing the risk for nursing home placement (Sands et al., 2012). For example, Sands and colleagues found that every 5-hour per month increase in attendant care services reduced the risk of nursing home placement by 5%; every 5-hour per month increase in homemaking services reduced the risk by 13%.
Reimbursement to Providers Nursing home operators have long contended that payments from public payers, particularly Medicaid, have been inadequate to support quality services. Independent experts have also voiced opinions that reimbursement levels should be raised, and research shows that reimbursement levels have ramifications for nursing home quality—increased Medicaid payments result in improvements in clinical quality (Mor et al., 2011). However, Medicaid and Medicare regulators have been concerned about rising expenditures, whereas the public is not inclined to pay more in taxes. The paradox is that, unlike many other industries, nursing home care is highly labor intensive because caregivers have to render services one on one. Hence, few options are available to increase productivity or slash operating costs. Some states have experimented with pay-for-performance (P4P) reimbursement models for Medicaid under the assumption that P4P would improve quality. However, research shows that P4P does not result in consistent improvements in nursing home quality of care (Werner et al., 2013). Incentives for Private Insurance Private LTC insurance is particularly expensive if a plan is purchased in the later years of a person’s life. People in younger age groups, for whom the cost of LTC insurance would be more affordable, face other financial priorities, such as saving for retirement, children’s college education, life insurance, and buying a home. The need for LTC in the distant future is considered a much lower priority. In 2009, only 7 million Americans (7% of those over age 50) had LTC insurance coverage (National Health Policy Forum, 2011). The elderly population most likely to benefit from private LTC coverage also has a lower average income than the general population. Hence, LTC insurance is difficult to market because premiums must be high enough to cover costs but low enough to attract clients. Public policy has created few incentives to stimulate the growth of LTC insurance. Subsequent to a demonstration project in four states, the Robert Wood Johnson Foundation designed a program called Partnership for Long- Term Care. The partnership program encourages individuals to purchase insurance, and, if these individuals require LTC services, they can apply for
Medicaid after their insurance benefits have been exhausted. To qualify for Medicaid, these individuals would be allowed to keep all or some of their financial assets. Otherwise, under Medicaid policy, people first have to use up their income and assets before they can qualify for benefits. Under the partnership program, exceptions are made to this rule. The Deficit Reduction Act of 2005 allowed all states to adopt the partnership program. About 40 states have adopted the policy, however, this policy has had only a modest effect in spurring the purchase of LTC insurance. The program was intended to incentivize middle-class Americans into buying LTC insurance, but the one group that has notably responded is the wealthy (Haizhen & Prince, 2013). A recent policy initiative in the form of the Community Living Assistance Services and Supports (CLASS) Act, a self-funded voluntary program to purchase LTC insurance from the government, was made part of the Affordable Care Act but was later dropped. Officials in the Obama administration conceded that if they designed a benefits package generous enough to meet the law’s requirements, they would have had to set premiums so high that few healthy people would enroll. And without a large share of healthy people in the pool, the CLASS plan would have become even more expensive, forcing the government to raise premiums even higher, to the point of the program’s collapse (Aizenman, 2011). In the meantime, most Americans over the age of 50 believe that the government should provide tax incentives for the purchase of LTC insurance (America’s Health Insurance Plans, 2012). Utilization During the 1990s, nursing home beds in the United States continued to increase whereas their utilization continued to decrease. Between 2000 and 2005, both the number of nursing homes and beds decreased. As a result, there was some improvement in capacity utilization as reflected in the occupancy rates. Since then, there has been a continuous decline in nursing home capacity and utilization (Table 2–1). There are two main reasons for this: (1) As discussed earlier, policy initiatives have emphasized a shift away from traditional nursing home care for those who can be accommodated in the community. It is estimated that 5 to 12% of residents in nursing homes require low levels of care according to their functional and clinical
characteristics (Mor et al., 2007). Their needs could be met with appropriate community-based LTC services. (2) Private paying patients have found the more independent lifestyles in residential/assisted living facilities to be much more appealing than those in skilled nursing facilities. Many people have figured that they might as well spend their personal savings in an upscale assisted living home and later apply for Medicaid if they need care in a skilled nursing facility. Quality Quality has been a well-recognized issue in LTC for some time. Although progress has been made in improving nursing home quality, little has been done to ensure quality of care in assisted living facilities and for community- based services. From the standpoint of quality of care delivered to nursing home residents, OBRA-87 was revolutionary. For example, the sharp decline in the use of physical and chemical restraints has been attributed to the requirements of OBRA-87. Other positive outcomes since the implementation of OBRA-87 standards include improved staffing levels, more accurate medical records, comprehensive care planning, increased use of incontinence training programs and a decrease in the use of urinary catheters, and increased participation of residents in social and recreational programs (Hawes et al., 1997; Marek et al., 1996; Teno et al., 1997; Zhang & Grabowski, 2004). Although substantial progress has been made, OBRA- 87 remains controversial for several reasons: Table 2–1 Nursing Home Utilization (Selected Years) aPercentage of beds occupied (number of residents per 100 available beds). Reproduced from Health, United States, 2007, pp. 370–371; Health, United States, 2012, pp. 317–318. Percent of beds occupied (number of residents per 100 available beds).
• In 2006, nearly one-fifth of the facilities were cited for violations that caused harm or presented immediate jeopardy to residents. Improvements appear to have reached a plateau (Wiener et al., 2007). • Regulations are inconsistently applied both within and across regions (Miller & Mor, 2006). Over a decade ago, Phillips (1996) had pointed out that there were significant differences in how inspectors applied the regulations and gave citations for noncompliance with the regulations. The oversight process is reliable only for assessing aggregate results, but inspectors frequently disagree on the scope and severity of problems uncovered (Lee et al., 2006). • Phillips (1996) concluded that only 16% of the OBRA-87 regulations actually focused on clinical care and therefore did not primarily focus on high-quality care. • Enforcement of OBRA-87 regulations takes on a punitive rather than a remedial tone. Nonflagrant violations can be better addressed with a focus on improvement rather than punishment (Willging,2 2008). In 2001, the DHHS announced the formation of the Nursing Home Quality Initiative, with a focus on making quality reports on nursing homes available to consumers over the Internet. Subsequently, the CMS released Nursing Home Compare as a guide for decision making by consumers. This competition-based reform has resulted in improvements in most postacute care performance measures (Werner et al., 2009). Policies for the Future The Institute of Medicine (2007) projected that the number of older adults with impairments or limitations could increase from approximately 14 million in 2007 to more than 28 million in 2030. It is also estimated that older and fragile adults will outnumber those between the ages of 25 and 64, many of whom are informal caregivers (Johnson et al., 2007). Future growth of one population group at the expense of another group (in this case, growth of the elderly population while at the same time a contraction of the working population) is called the demographic imperative.
The increasing prevalence of dementia is another piece in the demographic puzzle. In 2013, an estimated 5 million older Americans had Alzheimer’s disease. Although the majority of people with Alzheimer’s in the United States are white, African Americans and Hispanics are proportionately more likely to suffer from the disease (Dilworth-Anderson et al., 2008). By 2050, the number of elderly with Alzheimer’s disease in the United States could reach between 13 and 16 million. Health care costs, including those for LTC, are approximately 3 times more for those with dementia compared to those without dementia (Alzheimer’s Association, 2013). With an aging population, not only the United States but the rest of the world also faces a looming global epidemic of Alzheimer’s disease and other dementias. In 2006, the worldwide prevalence of Alzheimer’s was 26.6 million; it is expected to quadruple by 2050. It is also estimated that 43% of the cases would need high levels of care, equivalent to that provided in nursing homes (Brookmeyer et al., 2007). Alzheimer’s Disease International, a federation of 79 Alzheimer’s associations around the world, has called upon all governments to develop a national dementia strategy. It described dementia as one of the most significant health crises of the 21st century (Assisted Living Federation of America, 2013). It is also estimated that by 2050, 71% of all people with dementia will live in low or middle income countries (Prince et al., 2013). Of course, new developments in medical technology to prevent or control this disease could alleviate the crisis to some extent. Nevertheless, policy initiatives need to be taken before the problem gets out of control. Long-term care faces other serious challenges ahead. Much will depend on (1) the health status of Americans and the prevalence of disability in the population; (2) birth and mortality rates; (3) quality of education for the younger generation, innovations that generate national wealth, and quality of immigration that would be necessary for a strong economy; and (4) availability of financial resources as well as priorities for their use. These factors are critical from a broad policy perspective. The future need for LTC services is just one part of the equation; much will depend on the nation’s ability to actually finance and deliver the needed services. For example, if the infrastructure for delivery (such as a skilled workforce) is inadequate, many people may have to do without the services they may otherwise need. The complex interaction among financing, access, and utilization for LTC
services would play out within a broader context of health policy for two main reasons: 1. The aging of the population will have far-reaching repercussions beyond LTC, with spillover effects for retirement, Social Security, primary health care, acute care in hospitals, and numerous other health care services. With aging, the utilization for all types of health care services increases, not just the need for LTC. 2. Financing for LTC services is an integral part of the Medicare and Medicaid programs, which also cover various types of other health care services. These public insurance programs have been under growing financial pressures. Prevention The Affordable Care Act has taken a significant step in requiring all private and public health insurance plans to include preventive care and wellness. For example, effective January 2011, Medicare included an annual physical exam (called a Wellness Exam) as part of the covered benefits without any deductibles or copayments. The main purpose of the wellness exam is to do a risk assessment and develop an individualized prevention plan. Yet, much of disease prevention requires changes in personal behaviors and policy interventions that affect other than health care. For example, enhancing community environments that can promote walking, such as repairing or building sidewalks; protecting older adults against crime; and promoting leisure activities can improve physical activity and promote better health. An estimated 10% of the new cases of dementia can be avoided through better public health measures, such as targeting smoking, underactivity, obesity, hypertension, and diabetes (World Health Organization, 2012). Financing Currently, most middle-class families are unprepared to meet their future LTC expenses. Most people think that Medicare would pay for their LTC needs, but Medicare covers only short-term postacute care after discharge from a hospital. Without a strong reliance on private LTC insurance
coverage, the public sector will see its expenditures grow rapidly. However, despite the realization among policymakers of a potential crisis in long-term care, a comprehensive policy to address the issue has not emerged. The main dilemma is how to make LTC insurance more affordable without putting additional tax burden on younger Americans. Workforce Experts in LTC rate workforce issues at par with the aging of the population itself (Miller et al., 2008). A stable and qualified workforce has been referred to as the most important and yet the most neglected policy concern (Stone, 2003). The supply of workers appears to be cyclical, as it tends to follow fluctuations in the economy. Although a shortage of LTC workers has been predicted in the past, with high current rates of unemployment in the overall economy it is unclear whether a shortage of workers in the long-term care industry exists (McCarthy, 2013). Nevertheless, the demographic imperative strongly suggests a future workforce shortage. Ironically, the most vulnerable elderly—those on public assistance—are likely to suffer the most as the available workforce would tend to gravitate toward those who could pay for their services through private sources. The Eldercare Workforce Alliance, a coalition of 28 national organizations, has called for policy initiatives to address this impending problem. It is unfortunate that the most sweeping health care reform, the Affordable Care Act, does not touch upon this issue. Hence, under the law’s initiatives, moving a large number of the elderly and disabled out of nursing homes into the community may turn out to be a misdirected policy. Another issue that must be addressed is training deficits in geriatrics among physicians, nurses, therapists, social workers, and pharmacists. Ironically, all 125 U.S. medical schools have a pediatrics department but only three have a geriatrics department. Evidence shows that care of older adults by health care professionals prepared in geriatrics yields better physical and mental outcomes without increasing costs (Cohen et al., 2002). It is estimated that only about 9,000 practicing physicians in the United States (2.5 geriatricians per 10,000 elderly) have formal training in geriatrics. This number is expected to drop to 6,000 in the near future. Among nurses, less than 0.05% have advanced certification in geriatrics (Centers for Disease Control and Prevention/Merck, 2004).
Some difference in training can be made through licensure requirements for health professionals, such as graduation from programs that include a geriatric component in the overall educational curriculum, followed by clinical placement in long-term care. This can be coupled with educational assistance for a commitment and subsequent employment in long-term care. There are also not enough well-trained administrators to provide leadership in the LTC field. Recruitment and retention of NHAs is a growing problem nationwide (Maine Department of Professional and Financial Regulation, 2004). Lack of appropriate educational standards as a requirement for licensure of NHAs no doubt contributes to the problem. In turn, the shortage of NHAs prevents the raising of national educational standards to a minimum of a bachelor’s degree in health care administration. Research shows a positive association between the education level and training of administrators and quality indicators (Castle et al., 2013). Health Information Technology Leaders in the LTC field tend to look to the government for direction in health information technology (HIT) adoption (Hudak & Sharkey, 2007). Interoperable HIT can enable providers to track patients’ care across hospitals, nursing homes, home health agencies, pharmacies, and physicians’ offices. Interoperability is essential for an integrated system of health care that interfaces with LTC services. Long-term care needs to be fully represented in all future interoperable electronic health records. Such systems are particularly critical because the elderly frequently make transitions between LTC and non-LTC settings. Such transitions do not always occur smoothly because of high rates of missing or inaccurate information (Miller & Mor, 2006). HIT can also help reduce isolation among seniors and caregivers through electronically enabled social networks and online training for caregivers (Martin et al., 2007). HIT applications can also improve staff efficiency, interface with quality measures, reduce billing errors, improve clinical accuracy, and improve communication among providers. Mental Health The quality of mental health services in LTC settings remains a challenge.
There are concerns that patients are not receiving the mental health care they need or that they are receiving inappropriate, and sometimes unnecessary, mental health services. A review of the research literature by Grabowski and colleagues (2010) suggests that persons with mental illness are frequently admitted to nursing homes and their care is often of poor quality. Evidence-Based Practices As pointed out earlier, quality improvement in LTC has come to a standstill. Also, there is little evidence that merely increasing the amount of spending improves quality. To the contrary, quality improvement often reduces costs. Evidence-based practices will drive the future of quality improvement in all types of care delivery settings. Best practices in the form of clinical practice guidelines have been developed for long-term care. However, no policy initiatives have emerged to provide incentives for their use. Innovations in Care Delivery Starting with the baby boomers, the next generation of elderly will demand care delivery processes in which they will seek the right to dictate their choices and preferences. Many nursing care facilities are responding by adopting practices that reflect person-centered care and culture change. Regulators will need to incorporate these evolutionary changes into their oversight policies and practices. Terminology for Review access conditions of participation demographic imperative financing health policy interoperable Medicaid Medicare
Money Follows the Person program policymakers poorhouse public policy utilization For Further Thought 1. Why is it important for administrators in the long-term care field to understand policy and policymaking? 2. What lessons in U.S. policymaking can be learned from the passage of the Nursing Home Reform Act in 1987 and its near repeal in 1995? Case Long-Term Care for All The newly elected governor of a small state in which the elderly comprise 26% of the total population—twice the national average—is eager to fulfill his campaign promise. He had run for office on the slogan “long-term care for all.” The elderly in the state had overwhelmingly voted for him. Now in office about 9 months, his advisors tell him that providing long-term care services for all citizens in the state will be next to impossible because of high demand for the services. The governor, however, remains undeterred. The cornerstone of his proposed policy includes three things: (1) Develop a state- sponsored long-term care insurance plan. The insurance premiums will be income based, and will cost at least 15% less than a midlevel private long-term insurance plan being sold in the state. (2) Make it mandatory for all citizens, old and young, to purchase LTC insurance, either from the state or from a private insurance company. (3) Place restrictions on the use of nursing home and assisted living services in favor of
community-based services. Questions 1. Give specific reasons why the governor’s policy may not work, pointing out specific problems that would likely arise. 2. Will the policy work in a large state, everything else being equal? Give reasons. FOR FURTHER LEARNING The National Consumer Voice for Quality Long Term Care. The website offers information on several current issues. http://www.theconsumervoice.org Overview of the Nursing Home Reform Act http://www.allhealth.org/briefingmaterials/OBRA87Summary-984.pdf U.S. Department of Health and Human Services. Basic information on long- term care, with links to resources on Medicare, Medicaid, and Alzheimer’s. http://www.longtermcare.gov REFERENCES Aizenman, N. C. (2011). White House eliminates insurance program for long-term care. The Washington Post. Retrieved January 2014 from http://www.washingtonpost.com/national/health-science/white-house- kills-long-term-care-program/2011/10/14/gIQAVZLYkL_story.html. Alzheimer’s Association. (2013). 2013 Alzheimer’s disease facts and figures. Chicago, IL: Alzheimer’s Association. America’s Health Insurance Plans (AHIP). (2012). Who buys long-term care insurance in 2010–2011? Washington, DC: AHIP. Assisted Living Federation of America (ALFA). (2013). All about Alzheimer’s: Global group calls dementia a “crisis.” Retrieved January 2014 from http://www.alfa.org/News/3585/All-About-Alzheimers%3A-
Global-Group-Calls-Dementia-a-Crisis. Brookmeyer, R. et al. (2007). Forecasting the global burden of Alzheimer’s disease. Alzheimer’s & Dementia, 3(3), 186–191. Castle, N. G. (2001). Citations and compliance with the Nursing Home Reform Act of 1987. Journal of Health and Social Policy, 13(1), 73–95. Castle, N. G. et al. (2013). Quality of care and long-term care administrators’ education: Does it make a difference? Health Care Management Review, 39(1), (published ahead of print). Centers for Disease Control and Prevention/Merck. (2004). The State of Aging and Health in America, 2004. Centers for Disease Control and Prevention and Merck Company Foundation. Retrieved October 2008 from http://www.cdc.gov/aging/pdf/State_of_Aging_and_Health_in_America_2004.pdf Centers for Medicare and Medicaid Services. (2014). Money Follows the Person (MFP). Retrieved January 2014 from http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By- Topics/Long-Term-Services-and-Support/Balancing/Money-Follows- the-Person.html. Cohen, H. J. et al. (2002). A controlled trial of inpatient and outpatient geriatric evaluation and management. New England Journal of Medicine, 346(12), 906–912. Denny-Brown, N. et al. (2011). Money Follows the Person Demonstration: Overview of state grantee progress, July–December 2010. Cambridge, MA: Mathematica Policy Research, Inc. Dilworth-Anderson, P. et al. (2008). Diagnosis and assessment of Alzheimer’s disease in diverse populations. Alzheimer’s & Dementia, 4(4), 305–309. Doty, P. (1996). Caring for frail elderly people: Policies in evolution. Social Policy Studies No. 19. Washington, DC: U.S. Department of Health and Human Services. Edelman, T. S. (2003). Enforcement in the assisted living industry: Dispelling the industry’s myths. NAELA Quarterly, 3(2), 9–12.
Eiken, S. et al. (2013). Medicaid expenditures for long term services and supports in 2011. Washington, DC: Centers for Medicare and Medicaid Services. Eustis, N. et al. (1984). Long-term care for older persons: A policy erspective. Monterey, CA: Brooks/Cole Publishing. Grabowski, D. C. et al. (2010). Quality of mental health care for nursing home residents: a literature review. Medical Care Research and Review, 67(6), 627–656. Haizhen, L., & Prince, J. (2013). The impact of the partnership long-term care insurance program on private coverage. Journal of Health Economics, 32(6), 1205–1213. Hawes, C. et al. (1997). The impact of OBRA-87 and the RAI on indicators of process quality in nursing homes. Journal of the American Geriatrics Society, 45(8), 977–985. Hawes, C. et al. (2007). The RAI and the politics of long-term care: The convergence of science and politics in U.S. nursing home policy. Report published by the Milbank Memorial Fund. Retrieved September 2008 from http://www.milbank.org/reports/footnotes/US.html. Howes, C. (2010). Costs and benefits of in-home supportive services for the elderly and persons with disabilities: A California case study. Washington, DC: The Institute for Women’s Policy Research. Hudak, S., & Sharkey, S. (2007). Health information technology: Are long- term care providers ready? Oakland, CA: California HealthCare Foundation. Institute of Medicine (IOM). (1986). Improving the quality of care in nursing homes. Washington, DC: National Academy Press, Institute of Medicine. Institute of Medicine. (2007). The future of disability in America. Washington, DC: National Academy Press. Johnson, R. W. et al. (2007). Meeting the long-term care needs of the baby boomers: How changing families will affect paid helpers and institutions. Washington, DC: The Urban Institute.
Kaiser Commission on Medicaid and the Uninsured. (2013). Five key facts about the delivery and financing of long-term services and supports. Menlo Park, CA: The Henry J. Kaiser Family Foundation. Retrieved January 2014 from http://kaiserfamilyfoundation.files.wordpress.com/2013/09/8474-02-five- key-facts-about-the-delivery-and-financing.pdf. Lee, J. (2004). Aging policy and policy in U.S. Center for Human Resource Research, Ohio State University (PowerPoint slides, June 2004). Retrieved September 2008 from www.kspa.org/multy_board/bbs_files/20060406041206.ppt. Lee, R. H. et al. (2006). Reliability of the nursing home survey process: A simultaneous survey approach. The Gerontologist, 46(6), 772–780. Maine Department of Professional and Financial Regulation. (2004). Report of the Board of Nursing Home Administrators. Retrieved February 2009 from http://www.maine.gov/pfr/legislative/documents/nursingh.pdf. Marek, K. D. et al. (1996). OBRA ‘87: Has it resulted in positive change in nursing homes? Journal of Gerontological Nursing, 22(12), 32–40. Martin, R. D. et al. (2007). Essential but not sufficient: Information technology in long-term care as an enabler of consumer independence and quality improvement. Report to the National Commission for Quality Long-Term Care. Mclean, VA: BearingPoint Management and Technology Consultants. McCarthy, K. E. (2013). Long-term care workforce issues. OLR Research Report. Retrieved January 2014 from http://www.cga.ct.gov/2013/rpt/2013-R-0365.htm. MedPAC. (2002). Report to Congress: Medicare payment policy. Washington, DC: Medicare Payment Advisory Commission. Miller, E. A., & Mor, V. (2006). Out of the shadows: Envisioning a brighter future for long-term care in America. Providence, RI: Brown University. Miller, E. A. et al. (2008). Assessing experts’ views of the future of long- term care. Research on Aging, 30(4), 450–473. Mor, V. et al. (2007). Prospects of transferring nursing home residents to the community. Health Affairs, 26(6), 1762–1771.
Mor, V. et al. (2011). The effect of state policies on nursing home resident outcomes. Journal of the American Geriatrics Society, 59(1), 3–9. National Health Policy Forum. (2011, April 15). Private long-term care insurance: Where is the market heading? Forum Session. Washington, DC: George Washington University. O’Keeffe, J., & Siebenaler, K. (2006). Adult dayservices: A key community service for older adults. Washington, DC: U.S. Department of Health and Human Services. Phillips, R. E. (1996). Crises in the regulation of long-term care. Doctoral dissertation, Western Michigan University. Prince, M. et al. (2013). Policy brief for heads of government: The global impact of dementia 2013–2050. London, United Kingdom: Alzheimer’s Disease International. Sands, L. P. et al. (2012). Volume of home- and community-based services and time to nursinghome placement. Medicare & Medicaid Research Review, 2(3), E1–E20. Shapiro, A. et al. (2011). Medicaid cost-savings of home- and community- based service programs for elderly persons in Florida. Journal of Applied Gerontology, 30(1), 3–21. Social Security Administration. (n.d.). Legislative history: Social Security Act of 1935. Retrieved September 2008 from http://www.ssa.gov/history/35acti.html. Stevenson, K. (2007). History of long-term care. Retrieved September 2008 from http://www.elderweb.com/. Stone, R. (2003). Reality of caring for the long-term care population. In D. Blumenthal et al. (Eds.), Long-term care and Medicare policy: Can we improve the continuity of care? (pp. 40–47). Washington, DC: National Academy of Social Insurance. Teno, J. et al. (1997). The early impact of the Patient Self-Determination Act in long-term care facilities: Results from a ten-state sample. Journal of the American Geriatrics Society, 45(8), 939–944. Trocchio, J. (1984). Nursing home deregulation: Regulatory reform efforts.
Nursing Economics, 2(3), 185–189. Turnham, H. (2001). Federal Nursing Home Reform Act from the Omnibus Budget Reconciliation Act of 1987. National Long Term Care Ombudsman Resource Center. Retrieved September 2008 from http://www.allhealth.org/briefingmaterials/obra87summary-984.pdf. Vladeck, B. C. (1980). Unloving care: The nursing home tragedy. New York: Basic Books. Wagner, D. (2005). The poorhouse: America’s forgotten institution. Lanham, MD: Rowman & Littlefield Publishers. Werner, R. M. et al. (2009). Impact of public reporting on quality of postacute care. Health Services Research, 44(4), 1169–1187. Werner, R. M. et al. (2013). The effect of pay-for-performance in nursing homes: Evidence from state Medicaid programs. Health Services Research, 48(4), 1393–1414. Wiener, J. M. et al. (2007). Nursing home care quality: Twenty years after the Omnibus Budget Reconciliation Act of 1987. Menlo Park, CA: The Henry J. Kaiser Family Foundation. Willging, P. (2008). Personal electronic communication. September 23, 2008. World Health Organization. (2012). Dementia: A public health priority. Geneva: World Health Organization. U.S Department of Health, Education, and Welfare. (1975). Long-term care facility improvement study: Introductory report. Washington, DC: Department of Health, Education, and Welfare. Zhang, X., & Grabowski, D. C. (2004). Nursing home staffing and quality under the Nursing Home Reform Act. The Gerontologist, 44(1), 13–23. ______________________ 1Affordable Care Act is the shortened name commonly used for the Patient Protection and Affordable Care Act of 2010 as amended by the Health Care and Education Reconciliation Act of 2010. 2The late Dr. Paul Willging (1942–2011) was a well-respected leader in the long-term care industry. He served as president of the American Health Care Association (AHCA) at the time OBRA-87 was passed. The AHCA was heavily involved in representing the for-profit nursing home sector, which
supported the legislation.


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