CONFERENCE DRAFT DRAFT: Do not quote or circulate without permission from the author or AcademyHealth, June 25, 2005 AFFORDABLE CLUSTERED HOUSING CARE FOR OLDER AMERICANS: A PROMISING BUT STILL IMMATURE LONG-TERM CARE STRATEGY Stephen M. Golant, Ph.D. University of Florida This paper was commissioned by The Commonwealth Fund for use at its 2005 Colloquium, Building Bridges: Making a Difference in Long-Term Care, held June 25, 2005. AFFORDABLE CLUSTERED HOUSING CARE FOR OLDER AMERICANS: A PROMISING BUT STILL IMMATURE LONG-TERM CARE STRATEGY Stephen M. Golant, Ph.D. University of Florida Paper prepared for AcademyHealth Colloquium Sponsored by the Commonwealth Fund “Building Bridges: Making a Difference in Long-Term Care” Boston, June 25th, 2005 DRAFT ONLY: DO NOT QUOTE WITHOUT PERMISSION INTRODUCTION The increased appearance of purposively built, planned or organized housing settings offering both affordable accommodations and long-term care1 holds promise for leveling the unequal aging in place opportunities of higher- and lower-income frail older Americans. These noninstitutional shelter-care integrations catering to this country’s vulnerable elderly populations are currently referred to by various labels, such as service enriched housing, affordable supportive housing, affordable assisted housing, affordable residential care (assisted living), affordable congregate housing with services, affordable housing with supportive services, subsidized NORC service programs, assisted living in public housing, residential supportive services program, and service coordinated housing. What these conventional looking residential settings have in common is that a critical mass or sizable population cluster of physically or cognitively impaired lower-income older adults with chronic health problems occupies them. On-site professionals, trained staff, or volunteers often in combination with outsourced community-based service providers supply these vulnerable elders with long-term care services ranging from simple information and counseling to personal care and nursing needs. Making these housing settings affordable typically requires funding from the charitable contributions of nonprofit organizations or the fiscal support of several federal and state housing and social service programs. The outside appearance of these housing options—ranging from cottages to multi-unit high rises, sited on stand-alone lots or campus settings—will often be impossible to tell apart from the residences around them. In contrast, their building interiors and sometimes their sites will have at least some architectural or design modifications introduced by their owners or managements to make 1 We rely on the Institute of Medicine’s definition of long-term care “as an array of health care, personal care, and social services generally provided over a sustained period of time to persons with chronic conditions and functional limitations” (Institute of Medicine 2001). DRAFT: DO NOT CITE OR DISTRIBUTE Page 1 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. them safer and user-friendly. They will also sometimes have common areas intended for the dining and recreational activities of their residents and offices or clinics for the care workers. Although these shelter-care integrations are hardly new and for a long-time have dotted our long-term care landscape (Pynoos 1992), in the past they were isolated and piecemeal in occurrence. Only now have they become sufficiently numerous and mainstream, more organizationally visible, have achieved their own unique fiscal and political identities, and the private and public sectors are receiving them more favorably. As a private consultant expressed it: “When speaking of affordable housing buildings linked with affordable supportive services, you no longer have to explain what they are any more, why there’re needed, why they are beneficial to vulnerable seniors.”2 We will label this distinctive long-term care strategy— affordable clustered housing care (sometimes abbreviated to “housing-care”) (Figure 1). This paper accounts for the emergence of this hybrid housing-care strategy and examines its distinguishing features and most representative prototypes. It particularly argues that the housing-care strategy has various advantages over the most prevalent way that older persons with physical or cognitive disabilities and chronic health problems receive long-term care today—by what we label as affordable household centered care. This takes place mostly in the nondescript private conventional owned homes and apartments of older persons— sometimes who live with a spouse—and consists of assistance mostly delivered by family members and to a much lesser extent by paid service workers. The paper cautions that various factors still cloud the identity of these alternatives and various organizational barriers retard their expansion. Neither the academic nor the public policy communities agree on how to evaluate the quality of care and life of these settings and have failed to demonstrate cogently that they are indeed public policy success stories. The paper concludes by identifying a set of public policy relevant research questions designed to strengthen the arguments of stakeholders advocating for the growth of these newer affordable clustered housing care alternatives. FIGURE 1 ABOUT HERE UNDERSTANDING THE EMERGENCE OF AFFORDABLE HOUSING-CARE Demographics, The Courts, Public Policies, Organizational Behaviors Oft-cited statistics have frequently pointed to the strong growth and longer life expectancy of older Americans. But we have had these demographics for quite some time and 2 Personal communication, Conchy Bretos, CEO, MIA Consulting Group, Inc. DRAFT: DO NOT CITE OR DISTRIBUTE Page 2 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. thus they offer an unsatisfactory explanation for the increased prevalence of the affordable housing-care strategy (Friedland and Summer 1999). Other population issues appear to be far more important. Older consumers and their families have increased their demand for noninstitutional long-term care alternatives as they have become more alert to their aging in place potentials. Certainly, the growth of the private-pay assisted living alternative has hastened this awareness. The courts have also become involved. The 1999 Supreme Court Decision, Olmstead v. L.C. ruled that under Title II of the Americans with Disabilities Act (ADA) people (old and young) with disabilities have a right to live in the most integrated types of community settings. At the very least, this ruling has encouraged state policy makers to re-examine the institutional biases of their long-term missions (Mollica and Jenkens 2001). State governments are especially interested. Their Medicaid-funded nursing home beds are consuming an ever-increasing share of their budgets and they are seeking ways to divert their frail and lower-income elderly constituencies to less expensive long-term care alternatives (O'Brien and Elias 2004). These challenges are also not new, but perhaps state long-term care budgets have now reached some crisis threshold making it more likely that these housing-care options will be on their legislative agendas (National Governors Association and National Association of State Budget Officers 2004). Certainly, most projections point to a worsening of these long-term care cost burdens (U.S. Congressional Budget Office 2004). Other catalysts are also crucial. The increased incidence of HUD rent-assisted projects and Public Housing projects in which parts or all of their buildings have been converted to affordable licensed assisted living residences also points to a greater public policy interest. So too does a recent bill proposed by Senator Sarbanes to create an interagency council that would coordinate seniors’ housing programs and related services at the federal level. Federal government agencies and major nonprofit organizations have also stepped up their efforts to collect more reliable data. They seek to inventory more accurately the supply of these alternatives, to construct more rigorous typologies, and to identify research initiatives that would increase our knowledge about their appearance, operation, and outcomes. Organizations have newly emerged that have as their major mission the removing of financing and licensing obstacles that often deter providers from creating these housing-care alternatives.3 A steadily increasing research literature has documented these activities (Golant 2003c; Hunter 2003; Lawler 2001; Mollica 2003; O'Keeffe, O'Keefe, and Bernard 2003; Pynoos, Feldman, and 3 Examples: Coming Home Program, a Project of NCB Development Corporation with funding from the Robert Wood Johnson Foundation; MIA Consulting Group, Conchy Bretos, CEO, Miami Beach, Florida DRAFT: DO NOT CITE OR DISTRIBUTE Page 3 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Ahrens 2004; Schuetz 2003; Sheehan and Oakes 2003; U.S. Senate Special Committee on Aging 2003; Wilden and Redfoot 2002). Unequal Dual Long-Term Care Markets The emergence of the affordable housing-care strategy is also a response to the dual and unequal long-term care markets we have created for frail older adults, one for the wealthy and one for the poor. Nursing home occupants are today dominated by the poor and the very sick with almost 60% of them relying on Medicaid as their primary source of payment (O'Brien and Elias 2004). Prominent researchers have characterized U.S. nursing home care as a “twotiered system” (Mor, Zinn, Angelelli et al. 2004) with the Medicaid dominated tier judged as having more limited resources (such as fewer nurses) and offering inferior care. Similarly, lowerand higher-income frail older persons face very different opportunities when they seek less institutional care alternatives, such as assisted living. Even as most experts consider assisted living a superior model of long-term care4 that seamlessly links well-designed dwelling accommodations with personal assistance in a physical and organizational context that is more reminiscent of a hotel than a hospital (Kane 2001; Zimmerman, Gruber-Baldini, Sloane et al. 2003), they are too expensive for most poor older adults. Lower-income older persons also confront greater challenges when they deal with their long-term care needs in their conventional and often long-occupied renter- and owner-occupied households, that is, by the affordable household centered care strategy. Although this is the favored coping approach of rich and poor elderly populations alike, lower income seniors often have more complex long-term care needs that require more multifaceted solutions and they will confront more obstacles when they attempt to obtain them (United States Senate Committee on Banking Housing and Urban Affairs 2003). The Downsides of Household Centered Care for Lower-Income Older Adults The desirability of elderly persons coping with the frailties of old age by staying put or aging in place in their current households is a familiar mantra. This, however, may not be the ideal solution for older adults when they are poor. Most fundamentally, the housing occupied by lower-income older persons has downsides. Their occupants may be paying an excessive amount of their income on their 4 Because they are regulated differently by state governments, the physical appearance, philosophy of care, operating environment, services, and resident acuity profiles of these alternatives vary substantially (Golant 2004). DRAFT: DO NOT CITE OR DISTRIBUTE Page 4 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. dwelling costs. These accommodations sometimes suffer from basic physical deficiencies in their plumbing, heating, and cooling systems, and in their structural integrity (Golant 2003b). Even if their dwellings do not suffer from these more serious problems, they may still have design or architectural problems that make their accommodations difficult or unsafe to use and contribute to poor health outcomes and lower psychological well-being. Dwellings, for example, may have poor lighting, inadequate insulation, difficult to open windows, lack handrails or grab bars and have rooms that are inaccessible for persons using wheelchairs or walkers (Gitlin 2003; Newman 2003; Pynoos, Liebig, Overton et al. 1997). A consistent finding is that “older people, who are functionally compromised, confront numerous difficulties navigating at home and have various environmental problems including home modification and repair needs” (Gitlin 2003). Older persons occupying older and lower-valued housing are most at risk (Newman 2003). Lower-income older persons will have more difficulties purchasing all types of needed goods and services, such as appropriate assistive devices, privately hired case managers, and around-the-clock live-in help and their often significant out-of-pocket costs will constitute a larger share of their monthly income than they will for higher income older adults (U.S. Congressional Budget Office 2004). Moreover, they are less able to fall back on their accumulated assets or savings (Davern and Fisher 2001). Household centered care typically relies on the informal care by family members. Although well intended, they are usually inexperienced and untrained as caregivers. Their care is often unplanned and unpredictable, dependent on their idiosyncratic motivations and capabilities (Foundation for Accountability and The Robert Wood Johnson Foundation 2001). The home setting is furthermore an almost totally unregulated care environment, especially when the older person is only receiving assistance from nonprofessionals. There are rarely quality assurances regarding procedures or outcomes. Once informal caregiving efforts are initiated, moreover, it “often exacts a heavy emotional, physical, and financial toll, even while it is often a source of great personal satisfaction” and studies consistently find that family caregivers are afflicted with a host of physical and mental health problems (Beach, Schulz, Williamson et al. 2005; Friss and Newman 2004). When informal caregiving assistance becomes inadequate, lower-income older adults often turn to public sector solutions. Here, they and their family members are stymied by some well-known obstacles: lack of knowledge of how to get services; inadequate finances; and the “hassle factor”, that is, “not being able to get off work, not being able to arrange transportation, not having services available at the time of need, and not having help in coordination” DRAFT: DO NOT CITE OR DISTRIBUTE Page 5 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. (Foundation for Accountability and The Robert Wood Johnson Foundation 2001, p. 39). They typically must apply for social service, housing, and health care subsidies administered by different governmental programs with different regulations, eligibility requirements, and service coverage and they have difficulties bundling together these needed benefits (Golant 2003c; Lawler 2001; Summer 2003). Older persons with less education, the lowest incomes, women living alone, and members of minority groups (e.g., African-Americans and Hispanics), the fastest growing segments of this country’s old (United States Senate Committee on Banking Housing and Urban Affairs 2003) are jeopardized in multiple ways by these access challenges and arguably will be more easily intimidated by bureaucratic procedures (Golant 1999, 2003c). Lower-income older adults are especially vulnerable when they cannot rely on their spouse, children, or other family members to assist with their formal care (Boaz and Muller 1994; Lo Sasso and Johnson 2002; Miller, Longino, Anderson et al. 1999). The logistics of delivering long-term care to these private households may also be less than ideal. Older persons typically occupy dwellings that are in dispersed or scattered lowdensity suburban or rural locations (Golant 2002a). Even so-called naturally occurring retirement communities or NORCs (e.g., all-elderly condominiums) may have only isolated cases of elderly occupants in need. Consequently, paid caregivers will spend substantial amounts of travel time to reach their clients. When they deliver care to these spread out geographic markets, they will incur not only greater travel costs, but will also have more difficulty making shorter duration but timelier visits (Medicare Payment Advisory Commission 2001). Some states have developed managed care programs to deliver a full gamut of longterm care and acute care services. These often target low-income older and frail adult households and are financed with capitated payment systems (Stevenson, Murtaugh, Feldman et al. 2000). Accessed through a single-point-of-entry,5 they are designed to alleviate some of the challenges that low-income frail older adults experience when trying to age in place in their private households (Mollica 2003). The literature is unclear, however, as to whether these more comprehensive public policy organizational efforts assure low-income and frail older persons a good quality of care and life (U.S. General Accounting Office 2003). 5 Examples include Arizona’s long-term care system, Program for All-Inclusive Care for the Elderly (PACE), Social HMOs, and New York’s Medicaid Long-Term Care Program (Stevenson, Murtaugh, Feldman et al. 2000). Somewhat less comprehensive state-organized programs are funded primarily state’s home and community-based waiver programs (Reester, Missmar, and Tumlinson 2004). DRAFT: DO NOT CITE OR DISTRIBUTE Page 6 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. THE AFFORDABLE CLUSTERED HOUSING CARE STRATEGY Overview and Components A premise of the affordable housing-care strategy is that the housing settings of frail and lower-income older persons matter (Golant 1984). Practically, this means that the affordability, physical condition, design, social situation, and organizational features of these housing environments (including their neighborhood and community) can positively influence the longterm care experiences and outcomes of their occupants (U.S. House Select Committee on Aging 1987). Thus, low-income older households in affordable housing-care settings receive supportive services not only because of their dependency needs, but additionally because they are occupying a housing setting designed for this purpose. As one expert put it: “All service decisions begin with housing although its importance is often vaguely described” (Mollica 2003, p. 184). In contrast, affordable household centered care largely assumes incorrectly that frail older persons receive assistance and services in something akin to a housing vacuum that minimally affects the long-term care delivery process or its outcomes. Both strategies practice a social rather than a medical model of care. They have private and residential-like accommodations that avoid the institutional- or hospital-like features of the nursing home and its stringent regulatory environment, and offer their residents more autonomy, particularly more decision-making control over their care (Wilson 1993). The actual buildings that accommodate household centered care and housing-care settings also may be similar, although the latter may be found in more varied arrangements. They may comprise stand-alone or multilevel (that is, levels of care) multi-unit buildings sited on a single lot or cottage-like or multi-unit buildings clustered in a campus setting, neighborhood, or subdivision. Their older occupants may be owners, renters, or members of coops. Observers usually cannot distinguish these housing settings from their surrounding buildings (Figure 2). In most other respects, these strategies differ substantially. The affordable housing-care strategy is a product of sponsors or providers who have deliberately planned or organized an affordable residential setting as a source of affordable long-term care. The adoption of the housing-care strategy, however, may have occurred only later in the history of a project as it became evident that once independent residents were in need of long-term care assistance. FIGURE 2 ABOUT HERE The building interiors are likely to have some architectural or design modifications to their dwelling units, such as grab bars, no slip surfaces, emergency pull cords in each unit, and DRAFT: DO NOT CITE OR DISTRIBUTE Page 7 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. living areas designed to be accessible for persons in wheelchairs or relying on walkers. Providers will create common areas to accommodate both the recreational and the dining activities of the residents along with the clinical and office spaces required by their long-term care staff. Whatever their physical appearance, the hallmark of the housing-care strategy is a sizable population cluster—a critical mass—of older tenants at risk of needing long-term care. This population cluster may consist of some mix of higher- and lower-income older adults because some private-pay assisted facilities will accommodate some small share of lowerincome frail older persons in their residences—often Medicaid beneficiaries. By imposing this minimum population threshold requirement, we mostly rule out housing-care settings like adult foster care and board and care alternatives that are occupied by very small numbers of seniors. Critical mass facilitates all aspects of long-term care delivery. It becomes more economically and organizationally practical for a building to offer long-term care services and providers should realize per tenant cost savings because of delivery economies of scale (Evashwick and Holt 2000). It becomes more feasible for a provider to hire an on-site staff of multiple case managers or paid professionals dedicated to providing specialized services or to contract out for a wider array of community-based services better tailored to their occupants’ individual needs. The requirement of having on-site trained or professional personnel will sometimes rule out adult foster care or board and care facilities as housing-care settings because they are often operated as mom and pop operations without professional managers (Morgan, Eckert, Gruber-Baldini et al. 2004). A social worker can set up an office in the apartment building or a medical group can maintain on-site nurses for health maintenance checks (Evashwick and Holt 2000). Service providers are more aware of their target, can set-up more quickly, and can more quickly and flexibly respond to their clients’ unscheduled needs (Mollica 2003). Addressing the needs of a cluster of older consumers may also reduce the possibilities of duplicated services (Evashwick and Holt 2000) and allows for the more efficient scheduling of everything from staff assignments to the ordering of special purpose transportation vans. Offering more and varied social and recreational activities becomes far more feasible because of the greater likelihood of subgroups of interested seniors. More diverse communication approaches become feasible to educate the occupants about long-term care issues or availability. These can range from the more sophisticated inhouse TV systems to basic posters on bulletin boards (Evashwick and Holt 2000). The DRAFT: DO NOT CITE OR DISTRIBUTE Page 8 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. concentration of residents on the same site also increases the probability of “word-of-mouth” communications (Lawton 1977). More well-informed older persons are predicted to convey more readily their unmet needs and concerns and thus increase their probability of receiving appropriate remedies (KRA Corporation 1996; Summer 2003). The benefits of critical mass thus make it less likely that when the older occupants of housing-care settings need long-term care, they will have to act alone. They have ready and often unscheduled access to an on-site trained manager, administrator, operator, or staff-person (e.g., service coordinator6). These professionally trained persons join with frail older residents as initiators, counselors, organizers, or partners to help them assess, satisfy, and monitor their long-term care needs. Altogether then, the long-term care provided by the housing-care strategy is likely to be more predictable and routinized than for household centered care, especially when family caregivers are here the primary source of assistance. The types and levels of long-term care services provided by both strategies, on the other hand, may share more similarities than differences. In both settings, these may vary substantially. In housing-care settings, this assistance mix will reflect the physical and cognitive impairments of their occupants in combination with the constraints imposed (if any) by a state’s regulatory restrictions. The assistance may be consistent with either a “low service” or “high service” model (Mollica and Jenkens 2001, p. 39). Thus, their occupants may have either minor or serious impairments or chronic health problems and they may enjoy services as basic as counseling and referrals from a service coordinator or the full gamut of unscheduled personal care and selected nursing services. How their occupants access their long-term care services (Figure 2) may also vary. The housing-care providers may offer most of their long-term care with a dedicated on-site hired staff, but may adopt a “service model” approach whereby most or all of the services are outsourced and delivered to the housing site by one or more outside hired service providers or volunteers (Mollica 2002). The regulatory environment governing the delivery of long-term care then reverts to the service provider rather than to the housing provider. In practice, most housing-care settings combine these delivery approaches. The provision of care by an “outside,” but co-located service center constitutes yet another strategy. This usually consists of a service establishment at or near the housing setting, such as a nutrition site or an adult day care center (as exemplified by some PACE centers). Here, too, the regulatory environment reverts to the service provider rather than to the housing provider. 6 Service coordinators are hired by a rent-assisted building to help senior tenants arrange for needed home- and community-based services. DRAFT: DO NOT CITE OR DISTRIBUTE Page 9 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Sponsors or providers can rarely make their housing-care settings affordable by relying on the subsidies of a single public program. They usually will have to harness the funding streams from a minimum of two public programs or nonprofit organizations, one addressing the affordability of the housing setting, the other, the care context (Figure 2). This simple characterization grossly understates the complexity of the financing packages that housing providers must assemble to make these affordable housing-care strategies a reality (Jenkens, Carder, and Maher 2004). State governments will vary as to whether they have organizational strategies in place to facilitate the packaging of such financing, or place this responsibility entirely in the hands of individual housing sponsors (Wilden and Redfoot 2002). The source of public financing often drives the level of long-term care services provided. Some public housing projects, for example, depend on Medicaid Waiver subsidies to fund their services, which in turn demand that they provide long-term services comparable to those found in nursing homes. The Prototypes of the Affordable Clustered Housing Care Strategy Although sharing a common strategy, housing-care settings may look and operate differently. To capture this diversity, we distinguished six major components, each further designated by various attribute subcategories (Figure 2). Various combinations of these sets of attributes allow us to distinguish thirteen affordable housing-care prototypes with a recognizable appearance and operation (Figure 3) (Pynoos 1992; Sheehan and Oakes 2004; Tillery 2004; Wilden and Redfoot 2002). For greater ease of presentation, we combine the first two of these components (Type of Housing Setting and Physical Design) in our classification. FIGURE 3 ABOUT HERE The identification of these prototypes will confirm the experiences of advocates, providers, and consumer groups familiar with these alternatives. A good many of the prototypes include housing-care settings made affordable through various federal rent-assisted housing programs. This is not surprising given that these housing complexes contain some of the largest single concentrations of low-income older adults at risk of needing long-term care (Golant 2003c, p. 23). Some of the prototypes will consist of licensed assisted living facilities. Private-pay facilities may allocate some share of their units to low-income occupants making them affordable by some combination of Medicaid subsidies and state supplements to the federal Supplemental Security Program. Some privately owned multi-unit HUD rent-assisted properties DRAFT: DO NOT CITE OR DISTRIBUTE Page 10 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. and Public Housing projects also physically renovate some of their units and common areas to make them compatible with their frail tenants, provide them with Medicaid-subsidized long-term care, and have their states license them as assisted living residences. Some of the prototypes may consist of congregate apartment housing offering regular meals and a supportive social setting whose rents are kept low by their sponsoring nonprofit or faith-based organization. Other prototypes will consist of high-rise cooperatives whose managements rely on an outsourcing model to satisfy the long-term care needs of their lowerincome residents. The thirteen prototypes, while offering a reasonable portrayal of the diverse products produced by the affordable clustered housing care strategy, undoubtedly understate and oversimplify the alternatives that are “out there.” As one illustration, we have identified six distinctive categories of long-term care and five distinctive service delivery approaches. Although admittedly, not every possible combination of long-term care type and delivery is possible, it should still be obvious that the various combinations of even these two categories alone could yield numerous distinctive housing-care prototypes. Similarly, the component category, “housing setting and physical design features” encompasses a potentially wide array of components and attributes that are variously available in different housing-care options. We could have undoubtedly defined a more exhaustive set of components consisting of an even more detailed set of attributes, but there is an argument for simplification. The impairment severity of the older tenants admitted and retained by a housing setting is obviously important to distinguish (Golant 2004). We made the assumption, however, that the types of long-term care services offered in a particular housing-care setting would reflect these impairment variations. Although all the prototypes contain a sizable population cluster of older residents at risk of needing long-term care, we have left to empirical research the establishment of specific numerical thresholds. We also did not distinguish whether the clusters of older impaired tenants are restricted to one location—one wing, floor, or area—or rather they are scattered throughout a building (Wilden and Redfoot 2002). Although by definition these housing-care settings have a noninstitutional appearance and operation, our matrix of prototypes does not explicitly distinguish those settings that have more of an institutional feel about them. Some housing-care settings, for example, will have rooms, apartments, suites and bathroom facilities shared by two more residents (U.S. Senate Special Committee on Aging 2003). In other settings, moreover, reminiscent of an institutional environment—a nursing station will be found staffed with persons coordinating the allocation of personal care (Wilden and Redfoot 2002). Some housing-care settings may consist of units DRAFT: DO NOT CITE OR DISTRIBUTE Page 11 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. organized not as apartments or suites, but more like a dorm or ward. Some affordable housingcare settings are sited in a building or campus setting that contains other accommodations catering to older persons who are more or less frail (Golant 2004; Phillips, Munoz, Sherman et al. 2003)—as exemplified by an affordable continuing care retirement community. We could also have more finely examined how the housing provider delivers long-term care. Some offer only separate packages of services—geared to designated tenant impairment levels—while others adopt an a la carte system, whereby the consumer has more choice regarding specific long-term care services (Wilden and Redfoot 2002). Housing providers who “bundle” services sometimes argue that this approach has pricing and accounting advantages. Housing operators will also differ according to whether they give their older occupants the flexibility to opt out of particular services. For example, settings may vary as to whether residents must take a certain number of meals per day. Lastly, some settings, more than others, will allow their consumers themselves to direct their own care delivery. THE GOOD AND BAD OF DIVERSITY Sources of Diversity The existence of these multiple prototypes may be a double-edged sword. On the one hand, lower-income older frail consumers benefit from more choices catering to both their diverse housing preferences and very different long-term care needs. On the other hand, such eclecticism casts doubts on whether affordable clustered housing care has a unique and coherent identity as a long-term care strategy. Accounting for its diversity is crucial, however, if its providers are to convince consumers, housing and service providers, state policy leaders and regulators of its exceptional aging in place potential for poor and frail elderly persons. Researchers and data collection agencies must also be able to confirm the presence of a core set of distinguishing features. Four explanations help explain its diversity. First, diversity is assured by the variable scope of long-term care. What the critical mass of occupants in these housing-care options share is their ability to benefit as a group from affordable housing linked with affordable services. The “linked with services,” characterization, however, represents a very big net that captures variable types of services, levels of care, and service delivery strategies. Second, diversity is assured by the idiosyncratic responses of individual providers or sponsors. These stakeholders will interpret differently what constitutes an appropriate long-term care strategy and what types and levels of care can be legitimately offered in conventional housing. Some believe that even the most frail elders can live in ordinary housing settings as DRAFT: DO NOT CITE OR DISTRIBUTE Page 12 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. opposed to institutions, while others will balk at the prospects of catering to tenants with any personal care needs (Golant 1999). Third, conventional housing market dynamics matter and thus will influence development opportunities. Building costs and zoning restrictions vary across locations as will the level of consumer demand for these options. Fourth, how state governments regulate both their nursing homes and their private pay assisted living residences (and their various equivalents) will influence in turn what types and level of long-term care can be offered in affordable housing-care settings. State governments most often regulate their assisted living residences by what they cannot do and who they cannot serve. Only recently have assisted living residences developed their own identity because states are distinguishing them in their regulatory environments in response to strong consumer interest, the need for oversight, and the advocacy efforts of the assisted living industry. In contrast, most state governments do not regulate these affordable clustered housing care options unless they categorize them as assisted living residences. Thus, the seriousness of their tenants’ long-term care needs and in turn the level of services they receive will depend on how their state agencies regulate first, their nursing homes and second, their assisted living facilities. Affordable housing-care settings are generally left with older persons who have less demanding long-term care needs. Absent federal regulations, each state, however, makes its own judgment as to what constitutes “less demanding long-term care.” State governments introduce public policies that further guarantee diversity because they sometimes make the housing-care alternative affordable through their Medicaid programs. They accomplish this goal in three distinctive ways: (1) by allotting Medicaid Waivers to the apartments or units of either private-pay or government-subsidized rental buildings occupied by eligible older persons judged as needing nursing home level of care and that are licensed as assisted living; (2) by subsidizing the care received by older occupants of apartments or units of either private-pay or government-subsidized rental buildings licensed as assisted living (or its many equivalents) through their Medicaid’s state program personal care option (older persons can be less frail than the nursing home population); and (3) by delivering Medicaid waiver and state-funded long term care services (the aforementioned “service model”) to unlicensed (as assisted living residences) housing settings (Mollica 2002; Mollica and Jenkens 2001; O'Keeffe, O'Keefe, and Bernard 2003). These programs will also result in some affordable housing-care options accepting residents who would qualify for nursing homes. The very organizations whose mission it is to help create affordable housing-care options will influence who occupies them. The Coming Home Program has achieved an DRAFT: DO NOT CITE OR DISTRIBUTE Page 13 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. impressive record of working with state governments and nonprofit housing and service providers to support the development and operation of these affordable housing-care settings. Its guidelines, however, require that a housing provider make “25% or more of its units and services available to persons using Medicaid to pay for services and SSI-level incomes to pay for rent and meals” and “excludes providers who offer only ‘light care’ programs intended as a pre-nursing home service” (Jenkens, Carder, and Maher 2004, p. 181). The Downsides of Diversity The availability of these diverse options may result in the obfuscation of the identity of this housing-care strategy. An eclectic “product line” may confuse consumers and their advocates and make it difficult to inform them as to what is “out there.” Selecting an “appropriate” facility especially becomes more difficult if potential consumers cannot access complete and accurate information about the alternatives. In turn, the probability is greater that they will make bad relocation decisions (U.S. General Accounting Office 2004). Marketing becomes more difficult because of the absence of a standardized product. Some lenders and investors will be discouraged from entering the market, because they seek certainty and clarity in the products they finance. Insurance companies seeking standardized products to underwrite their policies will have difficulty judging risk. Furthermore, if there are any incidents of abuse or poor care, the media will quickly dismiss the whole category of options as unreliable. Unfortunately, the same image problems that confront the assisted living industry, what one group of experts labeled as the “black box” of long-term care services, is likely to plague this affordable housing-care strategy (O'Keeffe and Weiner 2004). INTRA- AND INTER-ORGANIZATIONAL BARRIERS IMPEDING AFFORDABLE CLUSTERED HOUSING CARE OPTIONS The presence of these affordable housing-care options depends on their providers obtaining subsidies making both their housing setting and long-term care affordable.7 A variety of political, regulatory and organizational hurdles, however, often impedes these financing efforts. 7 Among the most important federal program sources: Department of Housing and Urban Development, Department of Health and Human Services, Department of Transportation, Department of Veterans Affairs, Social Security Administration, Centers for Medicare and Medicaid Services, Administration for the Aging. DRAFT: DO NOT CITE OR DISTRIBUTE Page 14 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Intra-Organizational Barriers U.S. Department of Housing and Urban Development The major federal funding agency responsible for affordable rent-assisted (conventional) housing, the Department of Housing and Urban Development (HUD) has infrequently funded any type of long-term care services (Elderly Housing Coalition 2000; Newman 1995; Pynoos 1992; Redfoot and Sloan 1991). HUD has historically restricted its mandate to the financing of new construction, the availability of a satisfactory physical plant, and the subsidization of a building’s rent (Pynoos 1992; Redfoot 1993). So, even as HUD’s flagship affordable and supportive service rental program for seniors, Section 202, has incorporated user-friendly design features and common spaces (e.g., dining rooms, offices, clinics for the administering of services) (Bernstein 1982), its nonprofit sponsors must mostly finance their long-term care services from the subsidies of other federal and state social service programs, nonprofit organizations, or the voluntary contributions of residents (Pynoos 1992). Additionally, as a way to cut costs, buildings constructed under this program over certain periods often were very small and thus have “difficulties achieving the economies of scale needed to provide community spaces, staffing, and services to support an increasingly very old and frail resident population” (Heumann, Winter-Nelson, and Anderson 2001, p. ii). Most recently, HUD’s Assisted Living Conversion Program (initiated in 2000) will fund physical modifications in its rent-assisted buildings, but requires service delivery financing from third party sources, such as from a state’s Medicaid Waiver program (U.S. Department of Housing and Urban Development 2005). HUD has occasionally wavered from these long-standing practices. The Congregate Housing Services Program (initiated in 1978) allowed certain of its buildings to provide their tenants with nonmedical supportive services such as transportation, personal assistance, housekeeping, meals, and the hiring of a service coordinator. It required the residents or third party providers, however, to supply 60% of the funding, a policy that discouraged the participation of many potential nonprofit housing providers (Pynoos 1992). In the early 1990s, HUD did authorize the cost of providing Service Coordinators as an eligible expense for all federally subsidized housing programs serving older persons. Federal and State Departments of Health and Human Services The Medicaid program has emerged as an important funding source to subsidize the costs of long-term care services in noninstitutional housing settings. State governments, however, have considerable discretion as to how they administer this funding and each differently regulates everything having to do with how these alternatives look and operate. Most DRAFT: DO NOT CITE OR DISTRIBUTE Page 15 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Medicaid beneficiaries occupying private-pay assisted living facilities are concentrated in only a few states and most states prefer to spend their limited Medicaid budgets funding home and community based care services (Mollica 2002). Inter-Organizational Barriers A single Medicaid subsidy stream makes both the shelter and care of nursing homes affordable to their low-income occupants. In contrast, housing providers must look to multiple funding sources to subsidize their operations. These programs, however, have very different regulations and eligibility requirements, cover different services for different lengths of time, require qualified tenants to have different levels of income and assets, and give priority to some subgroups over others (Lawler 2001). Up to now, the Department of Housing and Urban Development and the Department of Health and Human Services have made little effort to insure that their programs work well together (Newman 1995; Pynoos 1992; Pynoos, Liebig, Alley et al. 2004). State and local level agencies often charged with administering their program funding also demonstrate little interagency coordination or cooperation (Lawler 2001). We can distinguish five specific categories of obstacles. 1) A different regulatory language of eligibility Affordable housing (HUD) and long-term care (HHS) programs do not use the same language when they assess the low-income eligibility of prospective older tenants or beneficiaries. Typically, long-term care programs measure income eligibility by relying on the minimum income threshold of the Supplemental Security Income benefit (or some ratio of it, as in the 300% rule) or on the federal poverty threshold (or some ratio of it). In contrast, affordable housing programs establish eligibility based on the size of the ratio of an applicant’s income to its metropolitan area’s or nonmetropolitan county’s median family income (adjusted for size). Thus, unlike affordable housing programs, long-term care programs assume that an older person’s income has the same purchasing power anywhere in the country. These numbers sometimes, but not always, “match up.” Thus, an income of an older person can be low enough to qualify for affordable housing, but too high to qualify for the Medicaid program. This occurs mostly in higher cost housing markets (United States Senate Committee on Banking Housing and Urban Affairs 2003). DRAFT: DO NOT CITE OR DISTRIBUTE Page 16 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. 2) Philosophy of care conflicts Many involved in the nursing home industry argue that long-term care should not be delivered in less institutional places like affordable housing-care settings because their regulatory standards are nonexistent or too lax—ranging from inadequate building codes to inadequate staffing requirements—to protect their residents against the possibilities of incompetent care (U.S. Senate Special Committee on Aging 2003). Another philosophy of care conflict arises when private-pay assisted living housing providers try to make their services affordable to low-income older persons by securing Medicaid funding. They argue that these care reimbursements are inadequate so that they must maximize their shelter (room and board) revenues by requiring their Medicaid beneficiaries to share their apartment/room accommodations (Jenkens, Carder, and Maher 2004; Mollica and Morris 2005). Advocates retort that denying frail older adults the benefits of private rooms and bath is inconsistent with a social model of care (Kane and Wilson 2001; U.S. Senate Special Committee on Aging 2003). The problem is exacerbated because State Medicaid programs can only reimburse these housing providers for their service costs (Mollica 2002)8 and often limit what they can charge for room and board. Furthermore, some states set their Medicaid personal maintenance allowance too low for beneficiaries to cover the costs of their room and board component. Consequently, housing-care providers—particularly private pay facilities but also rent-subsidized facilities in higher priced housing markets—have difficulty participating in the Medicaid program (Hyde and Mollica 2002; O'Keeffe and Weiner 2004). 3) Frailty levels required by Medicaid Program are too high To be eligible for their state’s Medicaid waivers, housing-care providers must serve older beneficiaries who have impairments or medical conditions serious enough for the nursing homes in their states to admit them. In some states, this acuity bar may be especially high and thus housing providers may prefer not to accommodate such tenants for various financial, management, or liability reasons. 4) Out of sync government rental subsidies Rent-assisted housing providers must often depend on tenant rental subsidies from government-sponsored housing programs (e.g., Section 8 Housing Voucher program). HUD’s formula for computing the amount of these subsidies is based on the costs of renting a conventional apartment building in a particular area. Voucher recipients, however, are not 8 Preparing, serving, and cleaning up after meals may be considered part of the service component. DRAFT: DO NOT CITE OR DISTRIBUTE Page 17 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. allowed to pay over 40% of their incomes for their rent and utilities. When prospective affordable housing-care properties are providing long-term care, however, their charges are higher than these conventional units—and thus the voucher subsidies are insufficient—because they have a higher debt service and maintenance costs associated with the more specialized physical infrastructure (e.g., common rooms, design and accessibility modifications) of their properties. Thus, housing providers do not apply for these conventional rental subsidies, because they are especially out of sync with their real unit operating costs (O'Keeffe and Weiner 2004). 5) Out of sync affordable rent-assisted programs: one example Currently, the Low Income Housing Tax Credit program (LIHTC) produces by far the largest number of new affordable housing units for low-income older Americans (Kochera 2002). In the properties built between 1987 and 1998, over a third of the older tenants were frail or disabled. Despite an obvious need for supportive services in these properties, state governments had only licensed, registered, or certified about 2 percent of them as assisted living or residential care. Among the obstacles (Kochera 2002): • The tax credit program is not able to finance the more extensive physical infrastructure (e.g., common areas) required by a housing-care setting. • The median apartment size of LIHTC properties for older persons is 32, and thus it is sometimes difficult to realize economies of scale when delivering supportive services. • It is uncertain whether the LIHTC’s “residential rental property” requirement is violated if its long-term care context includes nursing related services (as often required under a state’s Medicaid Waiver program). • Financing assisted living developments is seen as a risky use of tax credits, because investors fear that states will discontinue their source of Medicaid funding (organizations must renew their waivers every five years) or will not compensate them for their cost of living increases (Schuetz 2003). JUDGING QUALITY OF CARE AND LIFE OF HOUSING-CARE ALTERNATIVES As affordable clustered housing care options become more mainstream and heavily populated with frail and low-income older adults, a familiar set of stakeholders—consumers, providers, regulators, insurance and underwriters—will be especially interested in whether they can offer their occupants a normatively acceptable quality of life and care. This accountability will be paramount for two reasons. First, their occupants will have lower incomes and education levels and thus arguably are in need of more protection to insure against incompetent care or DRAFT: DO NOT CITE OR DISTRIBUTE Page 18 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. neglect; and second, federal and state governments will view these quality assessments as a basis for whether they should commit their limited fiscal resources to these alternatives. Evaluations of this hybrid housing-care option have variously focused on three broad aspects: (a) its housing setting, (b) its long-term care context, (c) and how housing providers have organizationally, physically, and socially integrated their housing settings and long-term care contexts. Making generalizations from the current literature is difficult for several reasons. First, researchers have rarely employed the same assessment protocols or strategies. Second, they have based their findings on analyses of very different housing settings, long-term care contexts, and resident impairment profiles. Third, most studies employ cross-sectional research designs and it is impossible to ascertain how the occupancy of older persons in affordable housing-care settings has influenced their quality of life or care trajectories of change (Golant 2003a). Fourth, judgments about quality of life and care depend on who is doing the evaluating—housing providers, service providers, elderly occupants, advocates, or government watchdog agencies (Mitchell and Kemp 2000; Polivka 2004; Sheehan and Oakes 2003; U.S. General Accounting Office 1999). We can distinguish eight important evaluation categories. (1) Traditional housing quality indicators: affordability and physical adequacy Two indicators have dominated traditional assessments of conventional housing quality by HUD and this agency sometimes analytically combines them into a “worst case” indicator: the affordability and the physical conditions of dwellings. Households paying over 30% of their income on their housing costs are considered living in unaffordable dwellings and dwellings are considered physically inadequate when they have fundamental deficiencies in their building structure, plumbing, heating and electrical systems (U.S. Department of Housing and Urban Development 1999). It may appear oxymoronic that so-called “affordable and decent housing” funded through federal and state housing programs are at risk of having these problems. Publicly funded rentassisted alternatives are not always “affordable,” however, and research has identified a substantial share of HUD’s rental housing inventory where the occupants were paying excessive rents (Buron, Nolden, Heintzi et al. 2000; Golant 2002c). In the year 2000, only 70% of public housing units and only 86% of the units in the multifamily rent-assisted housing stock met HUD’s physical condition standards despite their inspection and maintenance guidelines (U.S. Department of Housing and Urban Development 1999). DRAFT: DO NOT CITE OR DISTRIBUTE Page 19 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. (2) Accessibility, safety, and user-friendliness of dwelling and its site We have been informed about how the architectural and design features in affordable housing-care settings influence the care and quality of life of their frail occupants predominantly through the case studies of architects, environmental designers, and occupational therapists (Gitlin 2003). The absence of more generalizable scientific research is not for lack of evaluation protocols. Regnier (2002) identifies at least one hundred critical design considerations in his very comprehensive examination of architecturally desirable assisted living facilities. Similarly, in their detailed look at the architectural, construction, and product design of fully accessible dwellings, Wylde, Baron-Robbins, and Clark (1994) consider changes needed in every type of room in a typical dwelling and its environs. From an occupational therapy research perspective, Gitlin (2003) and Iwarsson (2003) offer an even finer grade of specificity (e.g., HEAP—Home Environmental Assessment Protocol) to insure an appropriate fit between impaired older people and their physical home settings. To assess whether persons with even mild dementia may be disadvantaged in poorly designed settings, researchers have constructed an “environmentbehavior factors model,” but focused on residents in nursing home special care units (Zeisel, Silverstein, Hyde et al. 2003). State regulatory agencies will differently judge the design features of an affordable housing-care setting as appropriate because some have more stringent physical infrastructure requirements than others, especially if a property is to be licensed as an assisted living residence (Schuetz 2003). Some federal programs, like HUD’s Assisted Living Conversion Program, have specific requirements (U.S. Department of Housing and Urban Development 2005). When a housing-care setting was built may be crucial. Even the buildings funded under the lauded Section 202 HUD rent-assisted program often lack appropriate design features because they were constructed during periods when selected federal building code standards were not required or their providers did not foresee that their future tenants would be so frail (Heumann, Winter-Nelson, and Anderson 2001; Pynoos 1992; Pynoos, Liebig, Alley et al. 2004; Wilden and Redfoot 2002). (3) The compatibility of the social situation of the housing-care setting—age composition and frailty profiles Older residents in housing-care settings usually positively evaluate their overall social situation, because they report receiving both emotional (expressive) and practical (instrumental) supports from their age peers (Research Triangle Institute 1996; Rosow 1967). Satisfactory DRAFT: DO NOT CITE OR DISTRIBUTE Page 20 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. social contacts and friendships and a low incidence of loneliness are common findings (Ficke and Berkowitz 2000). Many of these settings, although occupied by a cluster of older adults at risk of needing long-term care, also accommodate more independent tenants. Some research finds that the quality of life of these less frail residents will deteriorate when they have to live in close quarters or share common areas with age peers more vulnerable than themselves (Regnier, Hamilton, and Yatabe 1995). Their emotional well-being may suffer, for example, if they are continually reminded of their own vulnerability, even as they seek to deny or delay this prospective reality (Rosow 1967). Research conducted in four nursing homes reported a "significant trend for ‘excess’ depression/demoralization [of cognitively intact elderly persons] related to dissatisfaction with the environment due to commingling with the cognitively and/or behaviorally impaired" (Teresi, Holmes, and Monaco 1993, p. 357). Studies conducted in assisted living residences have also shown that mixing residents with and without dementia jeopardizes the safety and psychological well-being of those without dementia (Regnier, Hamilton, and Yatabe 1995). The more independent residents may actively discriminate against their frail neighbors by either avoidance or open hostility, while the more frail residents will be reluctant to initiate social relationships with those more independent than themselves (Sheehan 1992). Very frail residents may also find that the organized activities of the housing setting are geared to the more independent residents and thus they experience discomfort because they are unable to conform to these more demanding activity norms (Gubrium 1973). (4) The quality of life of the surrounding neighborhood and community Quality of life assessments predominantly focus on the buildings in noninstitutional settings. This is hard to justify because the geographic boundaries separating the room or the building from the “outside world” of housing-care settings become much more permeable. With the exception of the most physically and cognitively functionally impaired older adults, the life space of the residents will extend into the neighborhood and often into the community setting (e.g., residents accessing community-based leisure or recreation events or traveling to outsourced settings providing health care). Even when housing-care occupants are very frail, the limited geographic focus of past research seems unjustified because it ignores the reality that their family members often seek to participate in the caregiving process and thus a neighborhood’s accessibility or safety may influence their visiting behavior. More generally, epidemiologists are now studying how the neighborhood environment influences the health of its older residents (Balfour and Kaplan 2002; Diez Roux 2004). DRAFT: DO NOT CITE OR DISTRIBUTE Page 21 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. (5) Maintaining or improving independence and behavioral functioning and the appropriateness of supportive services Lower-income frail elderly occupants consistently and positively evaluate the supportive services in their housing-care settings. This is true for both HUD rent-assisted buildings staffed only by service coordinators and those offering a more comprehensive array of long-term care services (service coordination, meals, housekeeping, personal assistance, transportation, medication monitoring, nonmedical supervision, wellness programs, and personal emergency response systems). In eighteen projects with service coordinators, the residents reported feeling more secure knowing there was someone to listen to their problems and provide solutions. They were more aware of available services and how to access them (KRA Corporation 1996). Another multi-site study found that in HUD projects offering the comprehensive services of the Congregate Housing Services Program, the residents reported having “broader, more fundamental support, a sense of security, help from committed and caring people, coordinated services that provide an array of needed assistance, and increased integration [and said] it would be difficult or impossible for them to continue living as they are without the assistance they receive” (Research Triangle Institute 1996, p. 122). The research found that after a 24month period most of the residents had at least maintained their level of behavioral functioning (Ficke and Berkowitz 2000). Similarly, a study of one North Carolina affordable assisted living facility found that the majority of the low-income residents were able to better maintain their behavioral functioning and cope better with functional decline over a two year period compared with a community-residing sample of lower-income frail elders (Fonda, Clipp, and Maddox 2002). (6) The long-term setting as a “social” as opposed to a “medical” model of care Some researchers argue that the quality of life and care instruments used to evaluate nursing home settings are too medically or health oriented and that we need different evaluation protocols for noninstitutional care settings (Calkins and Weisman 1999). This can be expressed as a mathematical equation: assisted living = housing + services + a special philosophy of care (Manard 1999, p. 26). This has spawned a host of conceptual frameworks identifying the principals or therapeutic goals of such an “ideal” care model (Calkins and Weisman 1999). The conceptual framework of Regnier and Pynoos (2002, p. 31-35) offers a representative set of principals: privacy, social interaction, control, choice/autonomy, orientation/way finding, DRAFT: DO NOT CITE OR DISTRIBUTE Page 22 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. safety/security, accessibility and functioning, stimulation/challenge, sensory aspects, familiarity, aesthetics and appearance, personalization, and adaptability. Only case studies have mostly examined affordable housing-care settings from this perspective. Some scientific research suggests, however, that private-pay assisted living facilities do not consistently attain a social model of care because they do not guarantee private room and bath accommodations and because consumers receive services that are outside of their decision-making control (Hawes, Phillips, Holan et al. 2005; Kane and Wilson 2001; Sheehan and Oakes 2003). Medical or nursing home stakeholders have doubts about whether housing-care settings practicing a social model of care can offer a safe and secure long-term care environment for the very frail (Coleman, Looney, O'Brien et al. 2002; U.S. Senate Special Committee on Aging 2003). They question whether there is “an upper limit in the volume, variety, intensity and continuity of services that can be integrated” without a facility becoming an institution” (Monk and Kaye 1991, p. 17) and thus having to operate under a more stringent regulatory environment. Federal government assessments of private-pay assisted living facilities have identified quality of care failures especially in certain states (U.S. General Accounting Office 1999), and the media have similarly broadcasted quality of care failures in specific facilities. (7) The integration of the housing setting and long-term care context In many affordable clustered housing-care settings, the same provider group does not manage both the housing setting and their long-term care services. This is especially true when the supportive services are outsourced or contracted out to a different organization. There is, however, no guarantees that housing and service providers will agree on long-term care strategies, on their role assignments, or on desired outcomes (Golant 1998; Sheehan and Oakes 2003). Research suggests that the following disconnects can occur: ™ The housing provider may not have incorporated the physical design features consistent with those believed necessary by the service provider. ™ The housing provider assumes a more passive administrative role because much of the care responsibility has shifted to the service provider. Thus, the philosophy of care reflects that of the service provider, who conceivably may subscribe more to a medical model. ™ No single provider assumes total responsibility for the quality of life and quality of care of the older resident. Thus, the legal and ethical responsibilities of the housing and service providers for the well-being and occupancy rights of the older occupants become ambiguous. DRAFT: DO NOT CITE OR DISTRIBUTE Page 23 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. ™ Older persons have less say over their plan of care or decisions about moving to a higher level of care because the service agency is accountable to government agency guidelines. More positively, building managers consistently report that the introduction of service coordinators and other professional staff in rent-assisted buildings have provided them with important benefits. Trained as they are only with bricks and mortar building management issues, they can allocate their residents’ long-term care management tasks to these service professionals. Among the benefits they report (Golant 2003b, p. 39; Mollica and Morris 2005): ™ Lower apartment turnover and vacancy rates ™ Fewer housekeeping, repair, accident, and fire crises ™ Greater marketability of units ™ Fewer unscheduled visits from human service professionals ™ Fewer off-hour emergency calls to management and local paramedics ™ More time for bricks and mortar building management ™ Fewer failed unit inspections ™ Better tenant-housing management relations ™ Earlier recognition of tenant needs ™ Tenant and family members’ greater sense of safety, security, and support (8) Delaying an institutional quality of life and saving long-term care costs Both older persons and their family members typically view the nursing home as a “last resort” alternative because of its institutional quality of life. State governments view affordable housing-care settings as a potential cost-savings means to accommodate low-income frail older persons who would otherwise occupy their Medicaid nursing home beds (Sheehan and Oakes 2004). This expectation is typically predicated on data showing that the average monthly state cost to accommodate an elderly tenant in an affordable housing-care setting is less than in an assisted living residence or in a nursing home (Mollica and Morris 2005). The findings by academic researchers, however, are equivocal as to whether state governments correctly assume that by accommodating frail older persons in less expensive alternatives such as affordable housing-care options, they can reduce their institutionalization rates and thus their long-term care expenditures (Doty 2000; Ficke and Berkowitz 2000; Phillips, Munoz, Sherman et al. 2003; Polivka 2004). It is noteworthy that studies have also had difficulties showing that institutional cost savings will result by enrolling frail older persons in comprehensive publicly funded home and community based service programs (Sparer 2003). DRAFT: DO NOT CITE OR DISTRIBUTE Page 24 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Although an individual with physical and cognitive impairments can be maintained in a conventional housing setting offering supportive services at a lower cost than in a Medicaidfunded nursing home, programs designed to delay institutionalization must be directed to a population of potential beneficiaries. This leads to the dangers of what is labeled the “woodwork effect,” whereupon a program runs the risk of delivering services to older persons who would in any case not enter a nursing home (at least not for an extended time) (Kemper, Applebaum, and Harrigan 1987). More optimistically, recent studies have shown that the woodwork effect can be tempered when services are targeted to those at high risk of entering a nursing home (Greene, Ondrich, and Laditka 1998). This poses a dilemma, however, for the profile of older residents who often occupy affordable clustered housing care options (Redfoot and Kochera 2004), because they often do not have impairment severities that put them “at the nursing home door” (Kemper, Applebaum, and Harrigan 1987, p. 93). Studies also tend to underestimate the costs of operating an affordable housing-care setting because they ignore items such as building upkeep and maintenance costs, the lost rental income from apartments converted to “common areas,” lost property tax revenues (assuming government buildings are excused from property tax liabilities), and (higher) building insurance liability premiums (because of their frail tenants). Sometimes states can reasonably ignore these costs because they are the responsibility of other levels of government—so-called cost-shifting (Doty 2000). Thus, even as HUD is subsidizing a rent-assisted building’s bricks and mortar costs, it does not reap the financial benefits of any long-term care cost savings when its sponsor converts it to an assisted living setting. Our purpose here, however, is not to debate whether state governments realize longterm care savings by encouraging the development of these noninstitutional affordable housingcare settings. Rather, it is to point out that based on current research findings, states that rely on cost-savings’ and institutional delay outcomes to justify the expansion of these alternatives are creating “an especially lofty and difficult-to-meet standard of success” (Golant 2003c, p. 40). Their position is symptomatic of an oft-occurring academic research-public policy disconnect (Feldman and Kane 2003). That is, rather than justifying the expansion of this option based on relatively incontrovertible research evidence showing how both private-pay and affordable clustered housing care options produce many other favorable quality of life and care outcomes, states rely on the most contentious research findings to argue for this housing-care strategy. DRAFT: DO NOT CITE OR DISTRIBUTE Page 25 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. GOING FORWARD Even as the affordable clustered housing care strategy has become more widely adopted, we need better answers to the following policy-related research questions. (1) Patterns of housing-care occupancy and their long-term care use patterns We currently lack any national or state databases that would allow for a systematic description or inventory of these affordable housing-care options and their most important distinguishing features. We similarly lack information on the types and severity of their occupants’ impairment and chronic health problems and how their long-term care demands change over the course of their occupancy. We require information about the typical length of stay of these occupants, why they leave and the nature of their destinations (Golant 2004). Such data are a prerequisite to judge whether the current supply of these affordable housingcare options are adequate, what at-risk groups they are likely to serve, and the role that these options are playing in the overall long-term care network. We lack not only reliable national, but also small area assessments identifying states, counties, neighborhoods, urban or rural areas that are especially under-served by these affordable housing-care options (Golant 2002b; Golant and Salmon 2004). (2) Quality of life and care in these affordable housing-care settings We require a comprehensive evaluation of the quality of care offered in these settings and the quality of life of their occupants (Sheehan and Oakes 2004). These assessments should compare affordable housing-care settings with household centered care settings, private pay assisted living facilities, and nursing homes. Researchers must reach consensus on key questions: ™ Components on which to focus (e.g., housing settings, types and levels of long-term care, long-term care delivery approaches) ™ Assessment constructs: (a) structures, such as physical design, staff-resident ratios, (b) process-of-care, such as staff responsibilities, resident behavior restrictions, and (c) outcomes of care such as physical and psychological health, care deficiencies (Donabedian 1966) ™ Assessment instruments (unidimensional individual outcome indictors like residential satisfaction or self-rated health vs. multidimensional assessment instruments) ™ Research inquiry (e.g., structured interview vs. qualitative assessment approaches). DRAFT: DO NOT CITE OR DISTRIBUTE Page 26 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. (3) Assessing consumer demand: Quality of life and quality of care tradeoffs of the household centered vs. clustered housing care strategies Nationally conducted opinion polls repeatedly emphasize that older Americans seek to cope with their frailties in their own private households. The findings suggest that these consumers would be unhappy in alternatives such as purposively planned affordable housingcare settings (AARP 2000). These studies mostly rely on consumer “preference” data and thus may be guilty of eliciting responses to questions about which older consumers have given little thought or have inadequate information to answer rationally. We require empirical research on other modes of consumer assessment. We also must determine whether any real or perceived declines in the quality of life experienced by older consumers when they relocate to these housing-care settings are offset by their lower dwelling and long-term care costs, their greater ease of obtaining long-term care, their reduced burden on their family members, and the prospects of improved or at least stable physical, behavioral, and psychological health outcomes. (4) The multiple effects of “critical mass” on the delivery of long-term care A “critical mass” of older adults at risk of needing long-term care is a defining requirement of the affordable clustered housing care strategy. Most of our information regarding the desirability of delivering long-term care to a cluster of older persons as opposed to households in dispersed locations comes from anecdotal data and unrepresentative case studies. We require investigations into how the critical mass criterion influences the economic, social, and health outcomes of housing-care settings. Its effect on care worker-resident ratios would be especially important given that most projections predict a future shortage of such labor (Friedland 2004; Harahan, Kiefer, Johnson et al. 2003). It would also be useful to understand if the implementation of critical mass requirements (on client locations) would influence outcomes of programs such as PACE, Social HMOs and state-based comprehensive Medicaid Waiver service programs. (5) Prioritizing the barriers preventing the expansion of affordable housing-care options and how to implement solutions The way we currently finance and regulate affordable housing-care options is cumbersome, overly complicated, and inefficient. Housing and long-term care are unrealistically treated as very separate political, organizational, and economic domains. Scientific research studies should elicit the views held by the major stakeholders—housing providers, service DRAFT: DO NOT CITE OR DISTRIBUTE Page 27 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. providers, senior state housing and health agency heads, federal housing and health agency heads—regarding what they consider are the most viable strategies and programmatic initiatives to overcome these impediments. (6) Comparing on-site staffing, outsourcing, co-located service models of long-term care delivery Affordable housing-care settings now use their own hired staff to deliver care to their residents, rely on an outsourcing relationship with one or more service providers, utilize colocated service sites, or rely on a blend of these approaches. We have little understanding about the strengths and weaknesses of these alternate delivery approaches from the perspectives of the housing provider, service provider, or the older consumer. (7) Models of successful housing-care developments Researchers should carefully document (through structured interviews or qualitative methodologies) the characteristics of the successful housing-care development strategies used by both private- and public-sector stakeholders. State agency heads, management consultants, housing providers, nonprofit directors of home- and community-based service providers would be appropriate sources of information. DRAFT: DO NOT CITE OR DISTRIBUTE Page 28 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Figure 1. Affordable Household Centered Care and Affordable Clustered Housing Care Strategies Defining Characteristic Affordable Household Centered Care Affordable Clustered Housing Care Mission The idiosyncratic and often ad hoc provision of affordable long-term care to frail and lowincome older adults in private households allowing them to age in place in conventional and often very familiar housing settings. Social vs. medical model of care The physical setting of the housing context and the organizational environment of the long-term care context are more consistent with a social than a medical model of care. Unplanned and spontaneously provided in the households of private dwellings that were not designed as places to receive long-term care. Rented or owned dwellings in stand-alone single-family or multi-unit buildings. The planned or organized provision of longterm care to a sizable population cluster of frail older adults allowing them to age in place in a noninstitutional-like purposely built or converted housing setting that satisfies normatively acceptable quality of life and care standards. The physical setting of the housing context and the organizational environment of the long-term care context are more consistent with a social than a medical model of care. Purposely planned or organized as a housing setting offering long-term care. Origins Housing setting Design of housing setting Dwellings infrequently have physical design or architectural features addressing the needs of physically or cognitively vulnerable occupants. Dwellings with design modifications are voluntary efforts not mandated by regulation. At-risk frail older population Occupied by one or two lower-income older persons at risk of needing long-term care. Management role of household or housing settings in delivery of long-term care Household occupant charged with making long-term care decisions either alone or with assistance of family members or less frequently with assistance of nonprofit organization professionals or publicly funded care workers. From very limited to very comprehensive array of affordable health care, personal care, and social services provided over a sustained period to low-income persons who vary as to their chronic conditions and impairments. Care provided mostly by family caregivers and to a lesser extent by professionally delivered home and community based services. Long-term care context: Level and types of services Long-term care context: Mode of service delivery Funding of long-term care Public sector financial assistance is required to subsidize the delivery of long-term care not provided by family caregivers. Funding of affordable and physically decent housing Usually unclear as to whether household occupies affordable or physically decent housing. DRAFT: DO NOT CITE OR DISTRIBUTE Affordable owned or rented dwellings or cooperatives in good physical condition sited in stand-alone or multilevel multi-unit buildings or in cottage-like or multi-unit buildings clustered within a campus or neighborhood setting. Dwelling, site, and sometimes neighborhood settings will have purposely designed physical or architectural features often meeting federal, state, or local regulatory requirements that are consistent with the needs of physically or cognitively vulnerable occupants. Common areas will accommodate the recreational and dining activities of residents and the workspaces of long-term care personnel. Occupied by a critical mass or sizable number of older adults at risk of needing long-term care. Setting-dedicated manager, administrator, operator, or trained staff-person hired by housing setting or long-term care context joins with frail older residents as initiator, counselor, organizer, or partner in the long-term care delivery process. From very limited to very comprehensive array of affordable health care, personal care, and social services provided over a sustained period to persons who vary as to their chronic conditions and impairments. Care delivered by trained professionals, staff, or volunteers to the housing setting using one or more deliberately organized or planned service delivery approaches. Public sector financial assistance or charitable contributions from nonprofit organizations are required to subsidize the delivery of long-term care, irrespective of the family’s financial contribution. Public sector financial assistance is usually required to subsidize the development of physically decent and affordable housing. Page 29 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Figure 2. Components and Features of the Affordable Clustered Housing Care Strategy I. Type of Housing Setting 1. Multi-unit elderly-occupied stand-alone rental buildings, independent living communities, congregate living facilities. 2. Multi-unit stand-alone assisted living residences. 3. Multi-unit and cottage-like buildings co-located on assisted living campus setting. 4. Multi-unit apartment stand-alone cooperative buildings. 5. Urban or rural cooperative-housing arrangements in multi-unit rental buildings or single-family dwellings located in same building, subdivision or neighborhood. 6. Co-housing arrangements, consisting of single- or multi-family dwellings in a neighborhood setting. 7. Various combinations of the above features. II. Physical Design Features for the Physically or Cognitively Frail (Calkins and Weisman 1999; Regnier 2002; Schwarz and Brent 1999; Wylde, Baron-Robbins, and Clark 1994) 1. Interior dwelling components and attributes. 2. Common areas (social, eating, recreation, offices for service providers). 3. Site design and outdoor landscape components and attributes. 4. Neighborhood components and attributes. 5. Various combinations of the above features. III. Types of Long-Term Care (Crystal 1987; Institute of Medicine 2001; Kane, Kane, and Ladd 1998; Yee, Capitman, Leutz et al. 1999). 1. Information: counseling, assessment, and referral: health (early intervention) screening; health condition monitoring; personal care assessment; care planning (case management services); service coordination, referral and assistance with completing applications for service eligibility, and accessing, securing, or coordinating medical, personal, rehabilitative, and nursing services. 2. “Environmental care”: assistance addressing limitations in an older adult’s ability to perform instrumental activities of daily living such as shopping, cooking, laundry, housekeeping, errands, exercise programs, transportation; delivery of nutritionally balanced meals; home modifications; financial and legal advice; companionship; monitoring and emergency alert services. 3. Personal (custodial or nonmedical) care: assistance addressing limitations in an older adult’s ability to perform activities of daily living such as dressing, bathing, using the toilet, grooming, walking, and transferring; medication reminders, medication management; nutritionist counseling services; and provision of assistive devices or equipment. 4. Rehabilitative care and nursing services: assistance to address needs for physical, occupational, and speech therapies; and nursing services involving procedures addressing resident conditions such as bladder incontinence, colostomy or ileostomy care, catherization, oxygen supplementation, intravenous medication, and tube feeding. 5. Cognitive and behavioral therapy: supervisory and therapeutic assistance addressing residents experiencing confusion, orientation, memory or judgment problems, and wandering and other inappropriate behaviors. 6. Palliative or hospice care: physical, psychological, social, and spiritual care for dying persons, and their family members or other significant others. 7. Various combinations of these types of long-term care. DRAFT: DO NOT CITE OR DISTRIBUTE Page 30 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. IV. Service Delivery Approach to Housing Setting 1. On-site services from housing provider hired staff (in building or on campus setting). 2. On-site services from volunteered staff often from nonprofit/faith-based organizations. 3. On-site services, but outsourced by provider from home- or community-based agencies. 4. Co-located but usually separately owned and managed service facility on housing site or at proximate location offering limited or comprehensive long-term care services (e.g., congregate nutrition site, adult day care center such as found in PACE, On Lok programs). 5. Various combinations of these service delivery approaches. V. Affordable Housing Settings: Public Program/Financial Support Including Construction, Rehabilitation, Retrofitting Physical Plant Capital Expenditures, Operating Subsidies, Rent Subsidies (Kochera, Redfoot, and Citro 2001; U.S. General Accountability Office 2005; U.S. General Accounting Office 2002; United States Senate Committee on Banking Housing and Urban Affairs 2003) 1. Department of Housing and Urban Development (HUD) rent-assisted/low-income programs to build or substantially rehabilitate affordable multifamily rental buildings (e.g., Section 202, Section 221 (d)(3) BMIR, Section 231, Section 236, Section 8 New Construction and Substantial Rehabilitation, Public Housing, HOME Investment Partnership program, Community Development Block Grant program. 2. Department of Agriculture, Rural Housing Service rent-assisted programs (e.g., Section 515). 3. Tax Reform Act of 1986 to construct low-income affordable rental multi-unit housing, Low Income Housing Tax Credit (LIHTC). 4. HUD Tenant-based rent assistance Section 8 Certificates or Vouchers to make market-rate rental housing affordable (e.g., Housing Choice Voucher Program, HOME Investment Partnership program). 5. HUD HOPE VI (Housing Opportunities for People Everywhere), capital costs of demolition, construction, and rehabilitation, and replacement of public housing. 6. HUD Section 232 program providing mortgage insurance for the construction or substantial rehabilitation of assisted living facilities, and board and care homes. 7. Federal Home Loan Bank affordable housing loans and grants. 8. State and local affordable rental programs for low-income populations to construct or substantially rehabilitate rental buildings or offer rental subsidies (e.g., Affordable Housing Trust Funds, Mortgage Revenue Bonds, and Tax Exempt Bonds). 9. HUD’s Assisted Living Conversion Program and Public Housing Capital Fund Program (formula grants) to pay costs of retrofitting existing HUD/Public Housing rental assistance/lowincome multiunit rental buildings. 10. Federal Supplemental Security Income (SSI) and state supplement to the federal SSI payment (Mollica 2002). 11. Various combinations of these funding sources. VI. Affordable Long-Term Care: Public Program/Financial Support Capital Expenditures and Operating Subsidies (Mollica 2002; Mollica and Jenkens 2001; O'Keeffe and Weiner 2004; Stevenson, Murtaugh, Feldman et al. 2000) 1. Medicaid state plan, Personal Care Option. 2. Medicaid Waiver program/Assisted Living waiver. 3. Medicaid Waiver program/Home and Community Based Services. 4. Federal Supplemental Security Income. 5. State supplement to Supplemental Security Income. 6. Public financed long-term care programs usually relying on capitated payment systems integrating Medicare and Medicaid funding (e.g., Programs of All-Inclusive Care for the Elderly—PACE, Arizona Long-Term Care System, and Minnesota Senior Health Options). 7. Older Americans Act programs. 8. Department of Transportation (e.g., capital and operating costs for transportation van) 9. HUD, Community Development Block Grant Program (e.g., transportation and meals-onwheels programs). 10. Social Services Block Grant program. DRAFT: DO NOT CITE OR DISTRIBUTE Page 31 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. 11. 12. 13. 14. 15. 16. 17. 18. Congregate Housing Services Program (CHSP). HUD, Service Coordinator program. HUD, Public and Indian Housing, Resident Opportunities and Self Sufficiency (ROSS) Program/Public Housing Operating Fund. Tenant fees or contributions. Nonprofit/faith-based organization contracted supportive services. Nonprofit/faith-based organization charitable contributions. University-based service partnerships. Various combinations of these public programs/financing sources. DRAFT: DO NOT CITE OR DISTRIBUTE Page 32 of 40 Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. Figure 3. Affordable Clustered Housing Care Prototypes No. Housing Setting and Physical Design • 1 • • 2 • • 3 • • 4 • • 5 • • 6 • • 7 • • 8 • Types of Long-Term Care Affordable Housing: Public Program/Financial Support Service Delivery Approach Multi-unit stand-alone rental building Few common areas and limited design features. • Information • On-site hired staff Multi-unit stand-alone rental building Common areas and special design features • Information • On-site hired staff Multi-unit stand-alone rental congregate building Common areas and special design features • • • Information Environmental care Personal care • • On-site hired staff Outsourced community-based services • Multi-unit stand-alone rental building Common areas and special design features • • Information Environmental care • • On-site hired staff. Outsourced communitybased services • Multi-unit stand-alone rental congregate or cooperative housing Common areas and special design features • • • Information Environmental care Personal care • Outsourced community-based services • Multi-unit stand-alone rental building Common areas and special design features • • • • Information Environmental care Personal care Rehabilitative and nursing services • • On-site hired staff Outsourced community-based services Multi-unit stand-alone rental building Common areas and special design features • • • • Information Environmental care Personal care Rehabilitative and nursing services • • • • Information Environmental care Personal care Rehabilitative and nursing services Multi-unit stand-alone rental building and cottages co-located on campus setting Common areas and special design features DRAFT: DO NOT CITE OR DISTRIBUTE Affordable Care: Public Program/Financial Support • Subsidized Department of Agriculture, Section 515 rural apartments • Federal Service Coordinator Program • HUD-subsidized apartments (e.g., Section 202, Public Housing, Tax Credits) • Federal Service Coordinator Program Subsidized Department of Agriculture, Section 515 rural apartments, Section 8 funds • U.S. Department of Agriculture, Section 515, Community Facilities programs HUD-subsidized apartments (e.g.., Section 202, Public Housing, Tax Credits) • Federal Service Coordinator Program Older Americans Act programs • • • Nonprofit/faith-based organization’s supportive services funded with charitable contributions • Federal Service Coordinator Program Older Americans Act programs Congregate Housing Services Program Medicaid Waiver program Nonprofit organization sponsor maintains low rent schedule State-funded Public Housing • • • • • On-site hired staff Outsourced communitybased services • • • On-site hired staff Outsourced communitybased services • HUD Section 202 program funded by Assisted Living Conversion Program HUD Section 202 program funded by Assisted Living Conversion Program Page 33 of 40 • • • Federal Service Coordinator Program Older Americans Act programs Medicaid Waiver program • • • Federal Service Coordinator Program Older Americans Act programs Medicaid Waiver program Affordable Clustered Housing Care for Older Americans: A promising but still immature long-term care strategy Stephen Golant, Ph.D. • 9 • • 10 • • 11 • • • 12 • • 13 • • Multi-unit stand-alone rental building and cottages co-located on campus setting Common areas and special design features Multi-unit stand-alone rental building Common areas and special design features Multi-unit stand-alone rental building Few common areas Limited design features. Multi-unit stand-alone rental building Common areas and special design features Multi-unit stand-alone cooperative building Few common areas Limited design features • • • • Information Environmental care Personal care Rehabilitative and nursing services • • • • Information Environmental care Personal care Rehabilitative and nursing services Cognitive and behavioral therapy Information Environmental care Personal care Rehabilitative and nursing services Cognitive and behavioral therapy Information Environmental care Personal care Rehabilitative and nursing services Cognitive and behavioral therapy • • • • • • • • • • • • • • Information Environmental care Personal care • • On-site hired staff Outsourced communitybased services • On-site hired staff • • • On-site hired staff Co-located service facility (e.g., PACE) • • • • Nonprofit supportive service organization provides services or private contributions Private-pay assisted living residence HUD Section 8 Vouchers Supplemental Security Income State Supplement • • Medicaid Waiver program Supplemental Security Income State Supplement • HUD-subsidized apartments (e.g.., Section 202, Public Housing, Tax Credits) • State-determined flat rate Medicare, Medicaid, capitated payment system On-site hired staff Outsourced community-based services • HUD Section 8 Vouchers • Medicaid Waiver funding Outsourced community-based services • • No subsidies Tenant contributions; charitable contributions Medicaid funding • HUD Section 202 program funded by Assisted Living Conversion Program • Note: Bold type indicates that prototype features differ from “Housing Setting” in previous row. DRAFT: DO NOT CITE OR DISTRIBUTE Page 34 of 40 • References Cited AARP. 2000. Fixing to stay: A national survey on housing and home modification issues. Washington, DC: AARP. Balfour, J. L. and G. A. Kaplan. 2002. "Neighborhood environment and loss of physical function in older adults: evidence from the Alameda County Study." American Journal of Epidemiology 155:507-15. Beach, S. R., R. Schulz, G. M. Williamson, L. S. Miller, M. F. Weiner, and C. E. Lance. 2005. "Risk factors for potentially harmful informal caregiver behavior." Journal of American Geriatrics Society 53:255-61. Bernstein, J. 1982. "Who leaves -- who stays: Residency policy in housing for the elderly." The Gerontologist 22:305-313. Boaz, R. F. and C. F. Muller. 1994. "Predicting the risk of "permanent" nursing home residence: the role of community help as indicated by family helpers and prior living arrangements." Health Services Research 29:391-414. Buron, L., S. Nolden, K. Heintzi, and J. Stewart. 2000. Assessment of the economic and social characteristics of LIHTC residents and neighborhoods, Final Report. Washington, DC: U.S. Department of Housing and Urban Development, Office of Policy Development and Research. Calkins, M. P. and G. D. Weisman. 1999. "Models for environmental assessment." Pp. 130-140 in Aging, autonomy, and architecture, edited by B. Schwarz and R. Brent. Baltimore: The John Hopkins University Press. Coleman, M. T., S. Looney, J. O'Brien, C. Ziegler, C. A. Pastorino, and C. Turner. 2002. "The Eden Alternative: findings after 1 year of implementation." J Gerontol A Biol Sci Med Sci 57:M422-7. Crystal, S. 1987. The Management of home care services. New York: Springer Pub. Co. Davern, M. E. and P. J. Fisher. 2001. U.S. Census Bureau, Current Population Reports, Household Economic Studies, Series P70-71, Household Net Worth and Asset Ownership, 1995. Washington, DC: U.S. Government Printing Office. Diez Roux, A. V. 2004. "Estimating neighborhood health effects: the challenges of causal inference in a complex world." Social Science and Medicine 58:1953-60. Donabedian, A. 1966. "Evaluating the quality of medical care." Milbank Memorial Fund Quarterly 44:Suppl:166-206. Doty, P. 2000. Cost-effectiveness of home and community-based long-term care services. Washington, DC: Office of Disability, Aging and Long-Term Care Policy, U.S. Department of Health and Human Services. Elderly Housing Coalition. 2000. Providing an affordable continuum of care for low-income residents of senior housing. Washington, DC: American Association of Homes and Services for the Aging, The Elderly Housing Coalition. Evashwick, C. and T. J. Holt. 2000. Integrating long-term care, acute care, and housing: Building success through a continuum of care. St. Louis, MO: The Catholic Health Association of the United States. Feldman, P. H. and R. L. Kane. 2003. "Strengthening research to improve the practice and management of long-term care." Milbank Quarterly 81:179-220, 171. Ficke, R. C. and S. G. Berkowitz. 2000. Report to Congress: Evaluation of the HOPE for Elderly Independence Demonstration Program and the New Congregate Housing Services Program. Washington, DC: U.S. Department of Housing and Urban Development. DRAFT: DO NOT CITE OR DISTRIBUTE Page 35 of 40 Fonda, S. J., E. C. Clipp, and G. L. Maddox. 2002. "Patterns in functioning among residents of an affordable assisted living housing facility." Gerontologist 42:178-87. Foundation for Accountability and The Robert Wood Johnson Foundation. 2001. A portrait of informal caregivers in America, 2001. Portland, OR: FAACT--The Foundation for Accountability. Friedland, R. B. 2004. Caregivers and long-term care needs in the 21st century: Will public policy meet the challenge? Issue Brief. Washington, DC: Georgetown University, LongTerm Care Financing Project. Friedland, R. B. and L. Summer. 1999. Demography is not destiny. Washington, DC: National Academy on an Aging Society, Gerontological Society of America. Friss, F. L. and S. Newman. 2004. Family caregiving and long-term care: A crucial issue for America's families, Policy Brief. San Francisco: National Center on Caregiving, Family Caregiver Alliance. Gitlin, L. N. 2003. "Conducting research on home environments: lessons learned and new directions." Gerontologist 43:628-37. Golant, S. M. 1984. A place to grow old: The meaning of environment in old age. New York: Columbia University Press. —. 1998. "The promise of assisted living as a shelter and care alternative for frail American elders: A cautionary essay." Pp. 32-59 in Aging, autonomy, and architecture: Advances in assisted living, edited by B. Schwarz and R. Brent. Baltimore, MD: John Hopkins Press. —. 1999. The CASERA Project. Tallahassee, FL: Stephen M. Golant and Margaret Lynn Duggar & Associates, Inc. —. 2002a. "Deciding where to live: The emerging residential settlement patterns of retired Americans." Generations 26:66-73. —. 2002b. "Geographic inequalities in the availability of government-subsidized rental housing for low-income older persons in Florida." Gerontologist 42:100-8. —. 2002c. "The housing problems of the future elderly population, Appendix G-1." Pp. 189-370 in A quiet crisis in America: A report to Congress, edited by Commission on Affordable Housing and Health Facility Needs for Seniors in the 21st Century. Washington, DC: American Association of Homes and Services for the Aging. —. 2003a. "Conceptualizing time and space in environmental gerontology: A pair of old issues deserving new thought." The Gerontologist 43:638-648. —. 2003b. "Government-assisted rental accommodations: Should they accommodate homeowners with unmet needs?" Maine Policy Review 12:36-57. —. 2003c. "Political and organizational barriers to satisfying low-income U.S. seniors need for affordable rental housing with supportive services." Journal of Aging and Social Policy 12:36-57. —. 2004. "Do impaired older persons with health care needs occupy U.S. assisted living facilities?" Journal of Gerontology: Social Sciences 59:S68-79. Golant, S. M. and J. R. Salmon. 2004. "The unequal availability of affordable assisted living units in Florida's counties." The Journal of Applied Gerontology 23:349-369. Greene, V. L., J. Ondrich, and S. Laditka. 1998. "Can home care services achieve cost savings in long-term care for older people." Journal of Gerontology: Social Sciences 53B:S228S238. Gubrium, J. 1973. The myth of the golden years. Springfield, ILL: Charles C. Thomas. Harahan, M. F., K. M. Kiefer, A. B. Johnson, J. Guiliano, B. Bowers, and R. I. Stone. 2003. Addressing shortages in the direct care workforce. Washington, DC: Institute for the Future of Aging Services. Hawes, C., C. D. Phillips, S. Holan, M. Sherman, and L. L. Hutchison. 2005. "Assisted living in rural America: results from a national survey." Journal of Rural Health 21:131-9. DRAFT: DO NOT CITE OR DISTRIBUTE Page 36 of 40 Heumann, L., K. Winter-Nelson, and J. R. Anderson. 2001. The 1999 National Survey of Section 202 Elderly Housing. Washington, DC: AARP. Hunter, J. 2003. Results and recommendations from the research on assisted living facilities and the tenure question. Washington, DC: Statistical Research Division, U.S. Bureau of the Census. Hyde, J. and R. Mollica. 2002. "The Medicaid Program and assisted living properties: How the rules stymie government and industry needs." Senior Housing & Care Journal 10:45-54. Institute of Medicine. 2001. Improving the quality of long-term care. Washington, D.C.: National Academy Press. Iwarsson, S. 2003. "Assessing the fit between older people and their physical home environments: An occupational therapy research perspective." Pp. 85-109 in Annual Review of Gerontology and Geriatrics: Aging in Context: Socio-physical Environments, vol. 23, edited by H.-W. Wahl, R. J. Scheidt, and P. G. Windley. New York: Springer Publishing. Jenkens, R., P. C. Carder, and L. Maher. 2004. "The coming home program: Creating a state road map for affordable assisted living policy, programs, and demonstrations." Journal of Housing for the Elderly 18:179-201. Kane, R. A. 2001. "Long-term care and a good quality of life: bringing them closer together." Gerontologist 41:293-304. Kane, R. A., R. L. Kane, and R. C. Ladd. 1998. The heart of long term care. New York: Oxford University Press. Kane, R. A. and K. B. Wilson. 2001. Assisted living at the crossroads: Principles for its future. Portland, OR: The Jessie F. Richardson Foundation. Kemper, P., R. Applebaum, and M. Harrigan. 1987. "Community care demonstrations: What have we learned?" Health Care Financing Review 8:87-100. Kochera, A. 2002. Serving the affordable housing needs of older low-income renters: A survey of low-income housing tax credit properties. Washington, DC: AARP. Kochera, A., D. Redfoot, and J. Citro. 2001. Section 8 project-based rental assistance: The potential loss of affordable federally subsidized housing stock. Washington, DC: AARP. KRA Corporation. 1996. Evaluation of the service coordinator program, Volume 1, Findings. Springfield, MD: U.S. Department of Housing and Urban Development. Lawler, K. 2001. Aging in place: Coordinating housing and health care provision for America's growing elderly population. Cambridge, MA: Harvard Joint Center on Housing Studies. Lawton, M. P. 1977. "The impact of the environment on aging and behavior." Pp. 276-301 in Handbook of the psychology of aging, edited by J. E. Birren and K. W. Schaie. New York: Van Nostrand Reinhold. Lo Sasso, A. T. and R. W. Johnson. 2002. "Does informal care from adult children reduce nursing home admissions for the elderly?" Inquiry 39:279-97. Manard, B. B. 1999. "Assisted living for changing needs." Health Progress 80:24-34. Medicare Payment Advisory Commission. 2001. Report to the Congress: Medicare in rural America. Washington, DC: Medicare Payment Advisory Commission. Miller, M. E., C. F. Longino, Jr., R. T. Anderson, M. K. James, and A. S. Worley. 1999. "Functional status, assistance, and the risk of a community-based move." Gerontologist 39:187-200. Mitchell, J. M. and B. J. Kemp. 2000. "Quality of life in assisted living homes: a multidimensional analysis." Journals of Gerontology, Psychological Sciences and Social Sciences 55:P117-27. Mollica, R. 2003. "Coordinating services across the continuum of health, housing, and supportive services." Journal of Aging Health 15:165-88. Mollica, R. and M. Morris. 2005. Massachusetts supportive housing program. New Brunswick, N.J.: Rutgers Center for State Health Policy. DRAFT: DO NOT CITE OR DISTRIBUTE Page 37 of 40 Mollica, R. L. 2002. State assisted living policy 2002. Portland, ME: National Academy for State Health Policy. Mollica, R. L. and R. Jenkens. 2001. State assisted living practices and options: A guide for state policy makers. Portland, ME: National Academy for State Health Policy. Monk, A. and L. W. Kaye. 1991. "Congregate housing for the elderly: Its need, function, and perspectives." Pp. 5-19 in Congregate housing for the elderly: Theoretical, policy, and programmatic perspectives, edited by L. W. Kaye and A. Monk. New York, NY: Haworth Press. Mor, V., J. Zinn, J. Angelelli, J. M. Teno, and S. C. Miller. 2004. "Driven to tiers: socioeconomic and racial disparities in the quality of nursing home care." Milbank Quarterly 82:227-56. Morgan, L. A., J. K. Eckert, A. L. Gruber-Baldini, and S. Zimmerman. 2004. "Policy and research issues for small assisted living facilities." Journal of Aging and Social Policy 16:1-16. National Governors Association and National Association of State Budget Officers. 2004. The fiscal survey of states. Washington, DC: National Governors Association and the National Association of State Budget Officers. Newman, S. 2003. "The living conditions of elderly Americans." Gerontologist 43:99-109. Newman, S. J. 1995. "Housing policy and home-based care." The Milbank Quarterly 73:407441. O'Brien, E. and R. Elias. 2004. Medicaid and long-term care. Washington, DC: The Henry J. Kaiser Family Foundation. O'Keeffe, J., C. O'Keefe, and S. Bernard. 2003. Using Medicaid to cover services for elderly persons in residential care facilities: State policy maker and stakeholder views in six states. Washington, DC: U.S. Department of Health and Human Services, Office of Disability, Aging, and Long-Term Care Policy. O'Keeffe, J. and J. Weiner. 2004. "Public funding for long-term care services for older people in residential care settings." Journal of Housing for the Elderly 18:51-79. Phillips, C. D., Y. Munoz, M. Sherman, M. Rose, W. Spector, and C. Hawes. 2003. "Effects of facility characteristics on departures from assisted living: results from a national study." Gerontologist 43:690-6. Polivka, L. 2004. "Community-residential care for the frail elderly: What do we know; what should we do?" Aging Research and Policy Report 10:23-36. Pynoos, J. 1992. "Linking federally assisted housing with services for frail older people." Journal of Aging and Social Policy 4:157-177. Pynoos, J., P. H. Feldman, and J. Ahrens. 2004. "Linking housing and services for older adults: Obstacles, options, and opportunities." New York: Haworth Press. Pynoos, J., P. Liebig, D. Alley, and C. M. Nishita. 2004. "Homes of choice: Towards more effective linkages between housing and services." Journal of Housing and the Elderly 18:5-49. Pynoos, J., P. Liebig, J. Overton, and E. Calvert. 1997. "The delivery of home modification and repair services." Pp. 171-192 in Staying Put: Adapting the places instead of the people, edited by S. Lanspery and J. Hyde. Amityville, NY: Baywood Publishing Co. Redfoot, D. and A. Kochera. 2004. "Targeting services to those most at risk: Characteristics of residents in federally subsidized housing." Journal of Housing and the Elderly 18:137163. Redfoot, D. L. 1993. "Long-term care reform and the role of housing finance." Housing Policy Debate 4:497-537. Redfoot, D. L. and K. S. Sloan. 1991. "Realities of political decision-making on congregate housing." Pp. 99-110 in Congregate housing for the elderly: Theoretical, policy, and programmatic perspectives, edited by L. W. Kaye and A. Monk. Binghamton, NY: Haworth Press. DRAFT: DO NOT CITE OR DISTRIBUTE Page 38 of 40 Reester, H., R. Missmar, and A. Tumlinson. 2004. Recent growth in Medicaid home and community-based service waivers. Washington, DC: The Henry J. Kaiser Family Foundation. Regnier, V. 2002. Design for assisted living: guidelines for housing the physically and mentally frail. New York: J. Wiley. Regnier, V., J. Hamilton, and S. Yatabe. 1995. Assisted living for the aged and frail: Innovations in design, management, and financing. New York: Columbia University Press. Research Triangle Institute. 1996. Evaluation of the new congregate housing services program: Second Interim Report. Washington, DC: U.S. Department of Housing and Urban Development. Rosow, I. 1967. "Social integration of the Aged." Free Press, New York. Schuetz, J. 2003. Affordable assisted living: Surveying the possibilities. Cambridge, MA: Volunteers of America & Joint Center for Housing Studies, Harvard University. Schwarz, B. and R. Brent. 1999. Aging, autonomy, and architecture: advances in assisted living. Baltimore: Johns Hopkins University Press. Sheehan, N. W. 1992. Successful administration in senior housing: Working with elderly residents. Newbury Park, CA: Sage. Sheehan, N. W. and C. E. Oakes. 2003. "Bringing assisted living services into congregate housing: residents' perspectives." Gerontologist 43:766-70. —. 2004. "Public policy initiatives addressing supportive housing: The experience of Connecticut." Journal of Housing for the Elderly 18:81-113. Sparer, M. S. 2003. "Managed long-term care: Limits and lessons." Journal of Aging Health 15:269-91. Stevenson, D. G., C. M. Murtaugh, P. H. Feldman, and M. Oberlink. 2000. "Expanding publicly financed managed long-term care programs to provide greater access to home and community-based care." Center for Home Care Policy and Research Policy Briefs:1-8. Summer, L. 2003. Choices and consequences: The availability of community-based long-term care services to the low-income population. Washington, DC: Georgetown University, Health Policy Institute. Teresi, J. A., D. Holmes, and C. Monaco. 1993. "An evaluation of the effects of commingling cognitively and noncognitively impaired individuals in long-term care facilities." Gerontologist 33:350-358. Tillery, D. 2004. "Supportive housing initiatives in Arkansas." Journal of Housing for the Elderly 18:115-136. U.S. Congressional Budget Office. 2004. Financing long-term care for the elderly. Washington, DC: Congressional Budget Office. U.S. Department of Housing and Urban Development. 1999. The challenge of housing security: Report to Congress on the housing conditions and needs of older Americans. Washington: U.S. Department of Housing and Urban Development, Office of Policy Development and Research. —. 2005. "Assisted living conversion program (ALCP) for eligible multifamily housing projects." Federal Register 70:14148-14166. U.S. General Accountability Office. 2005. Elderly housing: Federal housing programs that offer assistance for the elderly. Washington, DC: U.S. General Accountability Office. U.S. General Accounting Office. 1999. Assisted living: Quality-of-care and consumer protection issues in four states. Washington, DC: U.S. General Accounting Office. —. 2002. Federal housing assistance: Comparing the characteristics and costs of housing programs. Washington, DC: U.S. General Accounting Office. —. 2003. Federal oversight of growing Medicaid home and community-based waivers should be strengthened. Washington, DC: U.S. General Accounting Office. DRAFT: DO NOT CITE OR DISTRIBUTE Page 39 of 40 —. 2004. Assisted living: Examples of state efforts to improve consumer protections. Washington, DC: U.S. General Accounting Office. U.S. House Select Committee on Aging. 1987. Dignity, independence, and cost-effectiveness: The success of the Congregate Housing Services Program. Washington, DC: U.S. Government Printing Office. U.S. Senate Special Committee on Aging. 2003. Assisted Living: Examining the assisted living workgroup final report, Hearing. Washington: U.S. Government Printing Office. United States Senate Committee on Banking Housing and Urban Affairs. 2003. The preliminary findings of the Commission on Affordable Housing and Health Facility Needs for Seniors in the 21st Century, Hearings, June 27, 2003. Washington, DC: U.S. Government Printing Office. United States Senate Committee on Banking Housing and Urban Affairs. 2003. The preliminary findings of the Commission on Affordable Housing and Health Facility Needs for Seniors in the 21st Century, Hearings, June 27, 2003. Washington, DC: U.S. Government Printing Office. Wilden, R. and D. L. Redfoot. 2002. Adding assisted living services to subsidized housing serving frail older persons with low incomes. Washington, DC: AARP, Public Policy Institute. Wilson, K. B. 1993. "Assisted living: A model of supportive housing." Pp. 196-218 in Advances in long-term care, vol. 2, edited by P. R. Katz, R. L. Kane, and M. D. Mezey. New York: Springer Publishing Co. Wylde, M. A., A. Baron-Robbins, and S. Clark. 1994. Building for a lifetime: the design and construction of fully accessible homes. Newtown, CT: Taunton Press. Yee, D. L., J. A. Capitman, W. N. Leutz, and M. Sceigaj. 1999. "Resident-centered care in assisted living." Journal of Aging and Social Policy 10:7-26. Zeisel, J., N. M. Silverstein, J. Hyde, S. Levkoff, M. P. Lawton, and W. Holmes. 2003. "Environmental correlates to behavioral health outcomes in Alzheimer's special care units." Gerontologist 43:697-711. Zimmerman, S., A. L. Gruber-Baldini, P. D. Sloane, J. K. Eckert, J. R. Hebel, L. A. Morgan, S. C. Stearns, J. Wildfire, J. Magaziner, C. Chen, and T. R. Konrad. 2003. "Assisted living and nursing homes: Apples and oranges." Gerontologist 43:107-117. DRAFT: DO NOT CITE OR DISTRIBUTE Page 40 of 40