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ASSISTED LIVING

Assisted living has emerged as a significant option for older adults seeking long-term care services. Yet a standard, national definition of assisted living has proven elusive. It is defined, in part, by companies and owners through their marketing efforts. It is also defined by state regulations governing the licensing of facilities, and there are wide variations among states in how assisted living is defined and licensed.

Assisted-living philosophy

While the definition of assisted living varies widely across states, there are several core terms that appear in state definitions. Assisted living is generally viewed as home-like and offers residential units and the availability of supportive and health-related services available to meet scheduled and unscheduled needs, twenty-four hours a day. Assisted living is viewed as the consumer's home, and as such includes the amenities that people generally expect in a residence, including a door that locks, a private bathroom, temperature control, a food preparation area, and the freedom to make choices about the types of services that are available. In addition, twenty-eight states have included a philosophy of assisted living (up from twenty-two states in 1998 and fifteen in 1996). These statements describe assisted living as a model that promotes the independence, dignity, privacy, decision-making, and autonomy of residents, and supports aging in place.

Regulations specifically governing assisted living have grown rapidly. By 2000, twenty-nine states and the District of Columbia had a licensing category or statute using the term assisted living, and four other states were in the process of developing such regulations. By contrast, only twenty-two states had such regulations in 1998. However, assisted-living facilities are regulated in the other states under rules that may use other terms, such as residential care facilities or personal care homes.

In 2000, states reported a total of 32,886 licensed facilities with 795,391 units or beds, a 30 percent increase over 1998. However, information was not reported by all states. Assisted living has developed primarily as a private pay market. However, by mid-2000, thirty-eight states covered services in residential settings—under either assisted-living or board-and-care licensing categories—through Medicaid, and coverage was being planned in three other states plus the District of Columbia. While the number of states covering services in residential settings has grown, the number of beneficiaries served remains limited with about 60,000 people served, a 50 percent increase in two years. Over 36 percent of the units (or beds) are located in three states: California (136,719), Florida (77,292), and Pennsylvania (73,075). Since 1998, the number of licensed facilities has soared in Delaware (by 214 percent), Iowa (144 percent), New Jersey (139 percent), and Wisconsin (119 percent). Ten states reported growth in licensed facilities of between 40 percent and 100 percent in the past two years: Alaska, Arizona, Kansas, Indiana, Massachusetts, Minnesota, Nebraska, New York, South Dakota, and Texas.

Within the industry and among state officials, there is often a debate about where assisted living lies on a social-medical continuum. Hawes et al. found that some operators view assisted living as a nonmedical model (without RN staffing) that provides high privacy and low service. Others view it as a high-privacy/high-service model that offers a wide range of services, aging in place, and private units. Over half of all the facilities were considered low-privacy/low-service models that offered shared units and limited health services. The study also pointed out that many in the industry question whether privacy and service level were accurate variables to use in describing assisted living. The report concludes that there is no agreement at the operational level on what constitutes assisted living.

The Hawes report also examined whether facilities support aging in place, the ability to receive additional services as needs change. Fifty-four percent would not retain residents needing transfer assistance, 68 percent would not serve residents needing nursing care, and 55 percent would not retain people with severe cognitive impairment. Twenty-four percent of assisted-living residents received help with three or more activities of daily living (ADLs), compared to 84 percent of nursing-home residents. The authors note that these findings suggest that assisted living may not serve as a substitute for nursing-home care. However, in the absence of assisted living, it is likely that many residents with fewer ADL impairments would seek nursing home placement. The differences in impairment levels between residents of assisted-living facilities and nursing homes may in fact be due to the availability of assisted-living facilities to serve residents with relatively low needs.

Findings from Hawes et al. contrast with those from Mollica which indicate that 87 percent of state licensing agencies feel that assistedliving facilities are providing as high a level of care as allowed by regulation. Anecdotally, licensing-agency staff indicate that some facilities may be serving people longer than they should (based on their staff capacity and training), even though the level of need is consistent with what is allowed by regulation.

The 1999 U.S. General Accounting Office (GAO) study of assisted living in four states (California, Florida, Ohio, and Oregon) concluded that these facilities support aging in place. Seventy-five percent of facilities included in the report said that they admitted residents who have mild to moderate memory or judgment problems, are incontinent but can manage on their own or with some help, have a short-term need for nursing care, or need oxygen supplementation. However, this level of care may be limited since it implies that people with severe memory loss who need more than occasional assistance with incontinence or who need nursing services for longer periods would not be served.

Privacy and living units

The size, layout, and shared nature of living units is an issue that often creates conflict in policy development. Older board-and-care rules allow shared rooms, toilets, and bathing facilities. Existing facilities that want to be licensed for assisted living often oppose rules requiring apartment-style units and single occupancy. Some states have grandfathered existing buildings or maintain separate board-and-care categories that allow shared rooms.

Single occupancy apartments or rooms dominate the private market. A 1996 survey of non-profit facilities conducted by the Association of Homes and Services for the Aging found that 76 percent of the units in free-standing facilities and 89 percent of units in multilevel facilities were private (studio, one-, or two-bedroom units). A similar survey by the Assisted Living Federation of America in 2000 found that 87.4 percent of units in ALFA member facilities were studio, one-, or two-bedroom units and 12.6 percent were semiprivate. Hawes et al. found that 73 percent of the units were private and meet the privacy aspect of the philosophy of assisted living, but only 27 percent of the facilities had all private units.

A 1998 survey of assisted-living facilities by the National Investment Conference (NIC) found that cooking appliances were more likely to be available in geographic areas where there was greater competition among facilities. The inclusion of stoves in living units is declining, however, and facilities are more likely to include microwave or toaster ovens in units. The survey also found that 17 percent of residents shared a unit. Fifty-two percent said that they shared their unit for economic reasons, 30.4 percent for companionship, and 14.9 percent because a private unit was not available. Just under 65 percent of those who shared a unit were satisfied with the arrangement, while 35.7 percent would prefer a single unit.

Nationally, consumer demand and competition are more likely than regulatory policy to determine whether studio or apartment-style living units are available. Licensing rules in eleven states and Medicaid-contracting specifications in four states require apartment-style units.

States seeking to facilitate aging in place and to offer consumers more long-term care options allow more extensive services. These states view assisted-living facilities as a person's home. In a single-family home or apartment in an elderly housing complex, older people can receive a high level of care from home health agencies and in-home service programs. Several states extend that level of care to assisted-living facilities.

The extent and intensity of services generally follow state criteria. Services can be provided or arranged that allow residents to remain in a setting. Mutually exclusive resident policies, which prohibit anyone needing a nursing-home level of services from being served in board-and-care facilities, have been replaced by aging-in-place provisions. However, drawing the line has been controversial in many states. In many states, some nursing home operators see assisted living as competition for their patients and oppose rules which allow skilled nursing services to be delivered outside the home or nursing-home setting.

Most states require an assessment and the development of a plan of care that determines what services will be provided, by whom, and when. Residents often have a prominent role in determining what services they will receive and what tasks they will do for themselves. A key factor in assisted-living policies is the extent of skilled nursing services that are allowed.

Hawes et al. found that nearly all facilities (94 percent) provided or arranged for assistance with self-medication; 97 percent assisted with bathing; and 94 percent offered help with dressing. Although nearly all states allow central storage of medications, 88 percent of the facilities provided or arranged this service. Arizona, for example, has three service levels that allow supervisory care services, personal-care services, and directed-care services. Residents in facilities with a supervisory care license may receive health services from home-health agencies. Facilities with a personal-care services license can provide intermittent nursing services and can administer medications. Other health services may be provided by outside agencies. Directed-care service facilities provide supervision to ensure personal safety, cognitive stimulation, and other services for residents who are unable to direct their own care.

Negotiated risk

One of the innovations of assisted living is the focus on consumer control and decisionmaking. At times, residents express preferences that raise concerns among facility staff. To mediate these differences, eighteen states use a negotiated-risk process to involve residents in care planning and to respect resident preferences that may pose a risk to the resident or other residents. Residents, family members, and staff meet to review issues about which there is disagreement. During this process, the parties define the services that will be provided to the resident with consideration for their preferences. The resulting agreement lists needs and preferences for a range of services and specific areas of activity under each service. To many regulators, negotiated service agreements are part of a philosophy that stresses consumer choice, autonomy, and independence, as opposed to a facility-determined regimen that includes fixed schedules of activities and tasks, which might be more convenient for staff and management. Placing the residents' needs and preferences ahead of the staff and administrators helps turn a "facility" into a home.

Selecting an assisted-living facility

Choosing a facility can be time-consuming and confusing. The Assisted Living Federation of America and the American Association of Homes and Services for the Aging have consumer checklists that can be used to frame information people might want about a facility. Other resources exist within each state. The agency responsible for licensing facilities may also have a checklist. In narrowing down the list of potential facilities, consumers should ask the licensing agency about any problems with compliance with state regulations. The state department on aging may also have information about assisted-living facilities.

Perhaps the key area is understanding what one is buying—the living unit, services, and activities—and how much this will cost. When reviewing the resident agreement or contract, one should make sure it is consistent with the marketing materials. It is also important to read the agreement to see the circumstances under which the facility may ask a resident to move. Understanding what services will be available if a resident gets sick or needs more assistance than when he or she moved in is one of the most important aspects of entering an assisted-living facility. Another important issue is what happens if a resident spends all of his or her resources and no longer has enough monthly income to pay the fee. As the supply of facilities expands, operators may be joining the growing number of facilities that contract with Medicaid to serve residents who qualify. It is important to ask if the facility participates in the Medicaid program.

Assisted living is a welcome addition to the array of long-term care services. Yet the nature and level of services vary, and it is important for potential residents to do their homework. It is better to seek the information before there is an emergency requiring a quick decision.

ROBERT MOLLICA

See also BOARD AND CARE HOMES; FINANCIAL PLANNING FOR LONG-TERM-CARE.

BIBLIOGRAPHY

Assisted Living Federation of America, Coopers and Lybrand. 2000 Overview of the Assisted Living Industry. Washington, D.C.: ALFA, 2000.

GULYAS, R. The Not-for-Profit Assisted Living Industry: 1997 Profile. Washington, D.C.: American Association of Homes and Services for the Aging, 1997.

HAWES, C.; ROSE, M.; and PHILIPS, C. D. A National Study of Assisted Living for the Frail Elderly. Results of a National Survey of Facilities. Myers Research Institute, 1999.

MOLLICA, R. State Assisted Living Policy: 2000. Portland, Maine: National Academy for State Health Policy, 2000.

National Investment Conference and the Assisted Living Federation of America. National Survey of Assisted Living Residents: Who Is the Customer? Washington, D.C.: ALFA, 1998.

U.S. General Accounting Office. Assisted Living: Quality of Care and Consumer Protection Issues in Four States. Washington, D.C.: GAO, 1999.

ATHEROSCLEROSIS

See VASCULAR DISEASE

AUTOBIOGRAPHY

See LIFE REVIEW; NARRATIVE