9 CAROLINE CICERO JON PYNOOS Picture your parents and grandparents growing older. They will likely tell you of their strong preference to age in their lifelong communities, where they have memories of both of the interior and exteriors of their homes, neighborhood streets, restaurants, community parks, and shops. Now imagine their possible changing physical needs. Do the changes they are experiencing as they age necessitate a move into a retirement community or nursing home? For some older adults with physical or cognitive issues, relocation is necessary, but for the majority of older people, increased services and home modifications can make it possible for them to stay in their homes for many years. After completing this chapter, you should have an understanding of: • Where, how, and why older adults age in place • Home modification programs that allow people with functional decline to adapt to their environments • Innovative models that allow for long-term care to be delivered in the home through shared housing, and through shared community experiences • Public program and service options in housing that contribute to the long-term care continuum and are alternatives to assisted living and skilled nursing facilities • Zoning, neighborhood design, and housing design that provide an aging-friendly built environment Housing is an integral component in the development of a comprehensive, community-based long-term care system. The home environment plays an integral role in the maintenance and improvement of older adults’ daily functioning (Wahl, Fänge, Oswald, Gitlin, & Iwarsson, 2009) and the management of chronic care and rehabilitation. The independent living environment is the cornerstone on which the continuum of long-term care is built, with community-based services existing to keep people living in their homes as long as possible. Long-term care is delivered to most Americans in their own homes or apartment units as they age in place with the support of informal caregiving, home health, rehabilitation, hospice, and other community-based services such as nutrition programs, social services, and transportation. The need for community-based long-term care can occur suddenly in response to an acute medical condition or a traumatic event. More common, it occurs in response to an older adult’s gradual decline in cognitive and/or physical functioning. In some instances, long-term care in the home occurs after a discharge following acute care in a hospital or emergency room or in a nursing home following a serious health care incident such as an accidental fall, stroke, or heart attack. Such conditions require assistance with activities of daily living (ADLs) and independent activities of daily living (IADLs) as well as accompanying modifications to the environment that support self-care, social engagement, and caregiving assistance from others. Both services and home modifications respond to the strong preference of persons with disabilities of all ages to live in independent housing in the community rather than in other settings such as an assisted living facility or nursing home. Aging in place refers to both the preference and the phenomenon of older adults living in their own homes for as long as possible, without relocating to a retirement community, assisted living facility, or nursing home. For older persons, in particular, the longing to age in place reflects a strong desire to keep living in familiar homes and communities, often in proximity to immediate and extended family and friends. In some instances, modifying housing to allow for aging in place may be a one-time event, but more likely for those with chronic diseases such as arthritis, multiple sclerosis, Parkinson’s, or Alzheimer’s, it is an intermittent or continuous process over a period of years during which the environment and individual lifestyle are adapted to changing needs. Whether older adults suffer from fall-related injuries, cognitive decline, and/or chronic health problems and diseases, the issue of how long or whether they can age in place is a complex one. Finding the balance between older adults’ right to self-determination and realistic assessment of their ability to safely age in place is a dilemma in the provision of community-based long-term care and in senior housing policy, as portrayed in Figure 9.1. Practitioners and policy makers must weigh that balance as they seek to provide an appropriate continuum of care. Policy makers influence the balance not only when they authorize and legislate programs, but also when they appropriate and reappropriate funds. For example, if the federal government and the states reduce Medicaid spending for in-home support programs aimed to prevent unnecessary institutionalization, older adults with functional disabilities might lose their ability to live in their own homes and be forced into other settings such as skilled nursing facilities. By default, policy may deem them unable to live at home because of the lack of available resources allocated on their behalf. Apart from policy that pits rights to self-determination against realistic assessments of functional abilities, the role of housing in the long-term care continuum depends on residents’ psychological, functional, and financial attributes and resources, the physical condition of the home and neighborhoods in which older people live, and the availability of alternative living settings. FIGURE 9.1 Creating a supportive housing environment in which an older person can age in place with community-based long-term care can be a balancing act. Americans prefer to age in place in their lifelong homes rather than relocating to assisted living or skilled nursing institutions. Indeed, very small numbers of older people actually relocate each year. Census data indicates that 99% of older people live in the same house as they did one year prior. Those who move do not relocate very far—usually within the same county (American Housing Survey, 2011, Table C-08-A0). Despite the common perception that older people often move into an “old folks home” to live out their final years, the vast majority of older adults stay living at home, even when long-term care is necessary, because of psychological attachments, financial considerations, and fear of institutionalization. This pattern is reflected in high rates of home ownership among older adults; almost 74% of housing units occupied by older adults are owned (American Community Survey, 2011, Tables C-01-00 and C-01-A0). By the year 2030, 34 million homeowners will be aged 65+, with more than 4 million aged 85+ (Pendall et al. 2012). In order to understand how older person’s housing can support them in the long-term care continuum, it is important to understand their housing profiles. Living in rental or owned housing, residing alone, having disabilities, or living in housing that has been adapted with supportive features are all characteristics that can affect the ability to age in place and obtain long-term care provision at home. In addition, the geographical locations in which older adults live, and their access to supportive services, shape the challenges they face and the opportunities for accessing community-based long-term care available to them. Large differences exist between older homeowners’ and older renters’ housing. The disparities influence Americans’ resources, options, and need for community-based long-term care. More than 21 million housing units are occupied by homeowners age 65+. Less than 8 million housing units are occupied by older renters who pay a median rent of $671 per month (American Housing Survey, 2011, Table C-01-RO). Most older renters live in rental units that do not meet housing policy standards for affordability (American Housing Survey, 2011, Table C-10-R0) because they spend 30% or more of their income on rent. A third of older renters spend half or more of their income on rent, leaving few resources left to pay for other basic necessities, including supportive services that could allow them to age in place. Two thirds of older homeowners own their residences free and clear with no home mortgages (American Housing Survey, 2011, Table C-10-00). The one third of older homeowners who do not own their homes free and clear pay a median of $643 per month on mortgage costs (American Housing Survey, 2011, Table C-10-00). Thirty-four percent of older homeowners who have mortgages pay more than one third of their monthly income on mortgage costs, and 18% spend more than half of their income. The locations where older people live influence their access to long-term care services and affect their ability to safely age in place. Nearly 16 million older households live in single family, detached homes (American Housing Survey, 2009, Table 2-1), which in low-density areas, such as suburbs, may make it difficult to access services. However, more than one million older-renter households are in buildings with 50 or more rental units (American Housing Survey, 2009, Table 4-1), where proximity to other older adults and economies of scale could be an advantage in accessing long-term care services. Most older people live in suburbs. Depending on their design and planning, many of these areas can negatively affect their ability to access transportation, local services, and age in place. Figure 9.2 shows where older people live. Nearly an equal number of older households reside in central cities and rural areas; they face different issues in accessing community-based long-term care. Twenty percent of all older people in America are women who live alone. In all, nearly 11 million older adults live alone; more than 75% of whom are women. More than 7 million older homeowners live alone (American Housing Survey, 2011, Table C-08-A0). Older adults who live alone may have greater needs than their cohabiting peers in accessing the community-based long-term care services continuum. Those in single-family homes may be especially isolated compared to those living in apartments or condominiums. Figure 9.3 depicts older adults who live alone. FIGURE 9.2 Where older adults live. Source: American Community Survey (2009, Table 2-1). FIGURE 9.3 Older adults living alone. Source: American Housing Survey (2011, Table C-08-A0). Spouses are the most common informal caregivers for older adults with functional limitations. Ten million older married couples live together and have the potential benefit of mutual caregiving as well as emotional and financial support. Nearly 3 million older people live with their adult children, and more than 3.5 million live with other relatives besides children or spouses (American Housing Survey, 2011, Table C-08-A0). They may also be advantaged in terms of obtaining caregiving. On the other hand, they may find themselves in the role of caregivers, even to the extent of raising grandchildren. The accessibility of older adults’ residences in the context of their changing physical capabilities affects their ability to age in place and utilize community-based long-term care. Nearly nine million community-dwelling older people report disabilities; two thirds of those with disabilities live in settings in which the housing environment may negatively impact their lives (American Housing Survey, 2009, Table 2-9). For example, 3 million report disabilities that reduce the ability to leave the house, and 1.5 million have self-care disabilities. Nine million older homeowner households report that they need to use steps to enter their single-family house from outside (American Housing Survey, 2009, Table 3-7) as do 1.5 million older renter households in multiunit buildings. Another 750,000 in detached rental houses must navigate steps to access their home (American Housing Survey, 2009, Table 4-1). Such accessibility problems are significant, as nearly 40% of older people report problems going up and down stairs, making accessing their homes difficult and putting them at risk of injurious falls. Organized long-term care services are available to some older people who live in rental housing, especially those who reside in government-subsidized rental housing, described later in this chapter. More than 800,000 households report that IADL assistance services are available to them, with more than half a million having access to transportation and meal services. Nearly 500,000 older households have housekeeping available to them, 370,000 can access shopping assistance, and 200,000 have access to financial management help and telephone assistance (American Housing Survey, 2009, Table 4-7). In addition, 200,000 to 300,000 renter households indicate that they have ADL assistance available to them in their rental units (American Housing Survey, 2009, Table 4-7). In addition to the economic investments that the majority of older people have made in their homes, a major reason that older adults desire to age in place is because of their psychological attachment to their homes and the communities in which they live. Attachment to place is indicated by the large percentage of older persons who have stayed in their homes for long periods of time. It is at the core of people’s housing preferences and a significant influence on their views about long-term care. Attachment to place even extends to the end of life, as many older people prefer to die in place in their own homes. Studies in Asia, Europe, and North America indicate that, across the globe, patients prefer to die at home (Beccaro et al., 2006; Brazil, Howell, Bedard, Krueger, & Heidebrecht, 2005; Tang & McCorkle, 2003; Tang, Liu, Lai, & McCorkle, 2005). Most terminal patients want to die at home so that during their final days they live in a familiar setting with the presence of family caregivers. For some older adults, attachment to home is intensified because this is the place where loved ones have also died (Shenk, Kuwahara, & Zablotsky, 2004). Both socioemotional meaning and number of years of residence in one place can contribute to residents’ attachment and desire to live out their lives in their own homes. Over the life course, specific landscapes, cities, neighborhoods, houses, and rooms form the foundation for personal stories and identities. For people who have lived in the same home for long periods of time, the home itself can have strong personal importance, cultural significance, and even spiritual meaning (Cooper Marcus, 2006; Golant, 2003; Rowles & Watkins, 2003). The home is often the place where older adults have raised their own families and represents ties to the wider neighborhood and community. For many, the house is much more than a physical structure; it is a Jungian metaphor—a mirror of one’s ego (Cooper Marcus, 2006; Rowles, 2008). Over 110,000 older Americans have occupied the same house for 70 or more years. Although 84% of them own their home, 16% of those who have lived in the same place for 70 years are renters. Another 308,000 have lived in the same house for 60 years, nearly 1.5 million have lived in their house for 50 years, and 2.9 million older homeowners have lived in the same place for 40 years (American Housing Survey, 2009, Table 2-9). Homes that have been passed down through generations may have especially significant meaning within extended families. Furthermore, in America’s diverse cultures, place attachment may have even more long-lasting and significant meaning such as that of an ancestral or spiritual home. Understanding attachment to place provides an important explanation for older adults’ motivation for aging in place (Rowles & Bernard, 2013). It is important for long-term care and aging-industry professionals to convey the power of place attachment to policy makers and other professionals, such as health care workers or public safety workers, so that they understand older adults’ behaviors and motivations for staying in their homes. Lack of awareness of older adults’ reasons for staying put can lead to ageism and the belief that older people are too set in their ways and unable to accept change. These misunderstandings arise not only in chronic care situations and evaluations of a housing unit’s physical adequacy, but also in emergency scenarios, such as weather-related events or natural disasters, in which older adults may be reluctant to evacuate their homes. Disabled and older adults’ right to age in place and live in the community is sanctioned by federal law. Exhibit 9.1 shows Federal Programs and Laws Benefitting Older Adults Housed in Their Own Communities. In 1999, the Supreme Court ruled in the Olmstead v. L.C. (United States Department of Justice Civil Rights Division, n.d.) decision, that states must administer programs and services to disabled persons, including older adults in the “most integrated setting appropriate” to their needs. This ruling came in response to a lawsuit by two disabled persons against the state of Georgia, which had forced them to live in institutions despite their preferences to live in the community (Pynoos, Nishita, Cicero, & Caraviello, 2008). The Olmstead decision is the impetus for several recent community-based long-term care service programs created by the federal government, such as “Money Follows the Person” and “Assisted Living Waivers,” which will be described later in this chapter. The Fair Housing Amendments Act (FHAA) of 1988, which is essentially a residential counterpart to the Americans with Disabilities Act of 1990 (ADA), requires landlords of existing multiunit buildings of four or more units to make “reasonable” modifications to public spaces, including entryways, if requested by residents who have disabilities. The term “reasonable” modification is subject to interpretation, as the FHAA has its roots in civil rights legislation with the courts interpreting it in terms of costs. The FHAA does not require that landlords pay for adaptations in individual units but does allow tenants to make modifications, subject to the provision that the tenant may have to remove them when he or she leaves if the landlord makes such a request (Pynoos et al., 2008). In addition, the FHAA requires new multiunit residential buildings to provide basic accessibility features in public spaces and residential units (the ADA covers employment, public accommodations and entities, and telecommunications). EXHIBIT 9.1 Federal Programs and Laws Benefitting Older Adults Housed in Their Own Communities NAME OF PROGRAM DESCRIPTION QUALIFICATIONS Public and Assisted Housing Rental units financed by the U.S. Department of Housing and Urban Development (HUD). Families or individuals pay no more than 30% of their income in rent. Low-income families or individuals of all ages Section 8 Certificates/Vouchers Provides a voucher that family or individual can take to approved apartment of their choosing. Covers the difference in rent above 30% household income and market value. Low-income families or individuals of all ages Section 202 Provides developers with funding for construction. Provides rental units and may provide income-supportive services, such as meals and transportation, and access to other federal service programs. Developer benefitting from 202 program must provide rentals to very low-income older adults and disabled adults. Congregate Housing Services Program Provides independent older adults in 202 units and public housing with services, including meals and transportation. Very low-income older adults with ADL limitations HOPE Combines Section 8 rental assistance with case management and supportive services. Low-income older adults with ADL limitations Service Coordinator Program Links older adults in Section 202 or public housing with services. Very low-income older adults Naturally Occurring Retirement Community Services Program Provides supportive services, health promotion. Residents of qualified NORCS Programs of All-Inclusive Care for the Elderly (PACE) Provides meals and supportive services. Medicare and Medicaid residents age 55+ at risk of institutionalization Money Follows the Person Provides medical and social services. Medicaid recipients who were institutionalized but desire to move back into community Assisted Living Waivers Provides medical and social services. Medicaid recipients at risk of institutionalization Medicare Medical Home Program Provides physician house calls. Medicare recipients, only available in some states Low-Income Housing Tax Credits (LIHTC) Provides developers with incentives for building low-income housing for families and seniors. A developer benefitting from an LIHTC must in turn provide subsidized rental units to tenants. Fair Housing Amendments Act of 1988 Requires landlords of multiunit buildings to make reasonable modifications for disabled tenants. Applies to buildings with more than four units. Olmstead v. L.C. 1999 Supreme Court Ruling Requires states to administer programs and services to disabled persons in “most integrated setting appropriate” to need. Resulting from original lawsuit in Georgia in which disabled adults were forced into institutionalization The FHAA is an important law that supports renters in apartment buildings; however, most Americans live in single-family residences. In lieu of federal legislation, state and local laws and regulations have been created to facilitate aging in place in single-family homes, as described in Exhibit 9.2. For example, some states stipulate that their local governments allow for the development of second units on singlefamily home properties. Cities and counties can allow for flexible zoning and housing density bonuses, whereby they permit the legal habitation and construction of second units. These small housing units, also known as granny flats, mother-in-law units, guest houses, and accessory dwelling units (ADUs) are important parts of the continuum of care (Cicero & Pynoos, 2008). Residents in need of supportive care can live either in the main house or an ADU, next to their caregivers, who can help provide them with needed long-term care services. Additionally, older homeowners could rent out such units in order to supplement their income and use it for purposes such as paying for in-home care (see Case Study 9.1; Liebig & Cicero, 2008). EXHIBIT 9.2 Local Ordinances and Design Facilitating Housing Supportive of Community-Based Long-Term Care
Housing’s Role in the Long-Term Care Continuum
CHAPTER OVERVIEW
LEARNING OBJECTIVES
INTRODUCTION
THE NEED FOR LONG-TERM CARE IN THE HOME
AGING IN PLACE
WHERE DO OLDER PEOPLE LIVE?
OWNERS OR RENTERS
WHERE DO OLDER PEOPLE LIVE AND WITH WHOM?
DISABILITY, RESIDENTIAL ACCESSIBILITY, AND SERVICE AVAILABILITY
ATTACHMENT TO PLACE
LAWS THAT FACILITATE COMMUNITY-BASED LONG-TERM CARE AND SUPPORT AGING IN PLACE
FEDERAL LAW
LOCAL ORDINANCES
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