Housing Options: Community Living and Assisted Living
Living at the Crossroads: Principles for Its Future
Rosalie A. Kane, D.S.W., Professor
Health Services Research, Policy, & Administration
School of Public Health
University of Minnesota
420 Delaware Street, S.E., Box 197
D-527 Mayo Building
Minneapolis, Minnesota 55455
Keren Brown Wilson , PhD
President, Jessie Richardson Foundation &
Founder, Assisted Living Concepts,
10570 SE Washington, Suite
Portland, Oregon 97216
September 21, 2001
An earlier version of this Discussion Paper was circulated at
the Summit on Regulating Assisted Living, a meeting of state regulators
and providers convened by the Assisted Living Federation of American
in Chicago in September 2001. Its goal is to serve as a backdrop
for consideration by providers, regulators, government payers, and
the general public about desired next steps for Assisted Living
in the United States. Rosalie Kane is partly supported in this work
by an Health Investigator Award from the Robert Wood Johnson Foundation.
The opinions are those of the authors and not necessarily of any
organizations with which they are affiliated. To help inform their
further work on this topic, the authors welcome comments and reactions,
preferably by email.
The Jessie F. Richardson Foundation is a not-for-profit organization
advocating innovation and quality in housing and long-term care.
It can be reached at 9803 SE Ramona Street, Portland, Oregon 97266,
phone 503.720.9000, Facsimile 503.698.5375
Why at a crossroads
Background: Evolution of assisted living
Three-legged stool of assisted living
Essentials for residential environment
Essentials for service capacity
Essentials for implementing philosophy
Balancing safety with autonomy and quality of life
Reconciling individual and community perspectives
Meetings residents' individuality and social needs
Individual interests versus community interests
Mainstreaming versus stratification
Establishing expectations consistent with willingness to pay
Doing more with less
Ducking true costs of shelter and food
Accepting limitations and sharing responsibility.
Strategies for action
Assisted Living at the Crossroads: Principles for
Assisted living evolved, in large part, because older
people wanted to avoid nursing homes and their families also wished
to spare them the regimented, abnormal lifestyle associated with
life in typical nursing homes. Assisted Living seemed to offer an
alternative that could provide or arrange necessary care in settings
that preserved privacy, dignity, choice, and normal life styles.
Since its origin in the mid 1980's, the growth in
assisted living, largely as a private-pay option, has been shaped
by the interaction of three forces: provider visions and goals;
consumer goals and responses; and state policies, which can encourage,
discourage, and shape the services and settings. At present, assisted
living is characterized by great intra-state and inter-state variation
in physical plants, service configurations, and the extent to which
their residents mirror the health conditions and functional limitations
that would qualify them to enter a nursing home.
Decisions in the public and private sector will profoundly
shape assisted living's future. Rapid growth, critical media scrutiny,
growing public payment, Congressional attention, industry stress,
and quality concerns have created a climate where change is likely
to occur and public oversight is likely to increase. While protecting
consumers against confusing market claims and poor care, it is imperative
to respond with a strategy that keeps assisted living's original
promise of a better way to live with long-term care needs.
Essential Elements of Assisted Living
This Discussion Paper identifies essential elements of assisted
living and describes the extent to which they are met in current
assisted living settings. Even if some entities now called assisted
living fail to embody them, assisted living has three major attributes
(the 3-legged stool on which assisted living rests) that arguably
define its very essence: a residential physical environment that
resembles private homes; a philosophy that gives priority to consumer
choice, independence, dignity, and preferred life-stye; and a capability
to muster routine and specialized services to meet individual need.
Any regulatory and quality monitoring process applied to assisted
living should preserve and, better, promote these essential characteristics.
Residential environment. The residential environment includes
at a minimum a room and full bath that is unshared unless the resident
explicitly wishes, resident control over the use of this space,
and accessability features to enhance residents' functionality and
mobility with assistive devices including wheelchairs. Public space
must similarly be designed to permit access to indoor and outdoor
spaces. (Beyond that assisted living settings may and often do have
many other autonomy-enhancing, life-enriching features that are
not available to nursing-home residents under current regulatory
expectations.) To maintain residential character, residents should
be free of the effects of disruptive behavior of other residents
in public spaces or intruding in their private space.
Philosophy. The philosophy of promoting consumer control
and choice in daily life and care and enhancing what residents would
consider a "normal" good quality of life is encompassed
in some state regulations already. However, tensions are unresolved
between respecting preferences versus protecting safety, and require
fresh thought about regulatory expectations, including regulations
that prohibit aging in place by defining who is "appropriate
for a setting." The essentials of implementing the philosophy
are that: residents preferences are known; attempts are made to
honor resident priorities and help them implement their preferences;
and residents are, as much as their abilities allow, in control
of their lives, their schedules, and their own space in their rooms
Service capability. Achieving a service capability that
results in individualized care has proven challenging, especially
at a cost that public and most private payers can afford. Much training
of personnel, along with a conducive work climate, is needed to
achieve truly individualized care. Use of universal workers and
delegation of nurse services have been used in assisted living to
make individualized service capability more feasible, but these
advances may be undercut by hasty promulgation of prescriptive staffing
standards for assisted living settings. Essential elements in service
capacity include offering or arranging: competent initial assessments
of needs and preferences; individualized service planning; kind,
capable, and responsive personal care 24 hours a day, 7 days a week;
3 meals a day; housekeeping; identification of changes in residents'
physical functioning and condition; arrangements for specialized
assessments and interventions; and responses to emergency situations.
The provider must also offer or arrange routine nursing services,
including medications management, but "nursing services"
should not be construed as services that can only be performed by
a registered or licensed nurse.
This Discussion Paper identifies challenges that must be addressed
to maintain and improve the quality of assisted living while preserving
the essential qualities that made it sought out be consumers.
resolving the tension between enhancing autonomy and preferred
quality of life while protecting safety. This plays out
concretely around determining how to deal with incidents such
as falls and accidents, and other adverse outcomes, including
weight loss and bed sores. An expectation of no adverse events
is unreasonable in any setting, let alone one that mirrors the
private home, but, beyond unambiguous examples on either side,
differentiating outcomes that result from poor care from unpredictable
outcomes is difficult. Moreover, providers, regulators, and
advocates may be reluctant to allow consumers to decide to take
risks in order to enjoy their lives, even though hard information
about the likelihood and severity of many of these risks is
scant. Negotiated risk agreements, whereby an informed consumer
knowingly and formally agrees to shoulder risks and providers
articulate the steps they will take to minimize those risks
are one vehicle that could help resolve this tension, but more
explication is needed about how they might operate within a
framework of quality improvement and quality assurance.
determining the conditions under which a consumer can remain
in the assisted living setting. Aging in place has been
an ideal of assisted living, but it is hard to realize in the
face of perceived safety risks. Some jurisdictions prohibit
consumers with specified functional problems or needs from remaining
in assisted living, and some providers prefer an ideal that
they disclosure retention criteria rather than aim to keep residents
who want to stay. A recent Michigan Supreme Court decision led
to a state statute prohibiting enforced removal of residents
from assisted living settings if they and their interested family
want them to stay, the provider is willing to keep them, and
the primary care provider affirms that health needs will not
be jeopardized in the setting. This ruling may offer a promising
guideline for other jurisdictions.
meeting the consumers' needs and wishes for individuality
and for community. People have a need for both individuality
and belonging to a community, though the emphasis placed on
each varies according to the person. At the individual level,
this raises a tension between mandated activity programs versus
mandated individual attention. A related issue is how to balance
the interests of the community of residents with those of particular
individuals. Setting up special areas for dementia or for heavy
care may be responsive to some concerns of residents and families
about the effects of encroaching disability levels on community
life, but undercuts aging in place.
establishing expectations that coincide with willingness
to pay. Most state public payment systems and many privately
paying consumers have inadequate financial resources to pay
for an ideal assisted living setting and services. Separating
the costs of shelter and board from services and care is an
important contribution of assisted living, but most public subsidy
programs attribute an unrealistically low rate for shelter and
meals, often pegging it at what Supplemental Security Insurance
(SSI) allows for room and board. Overall, the public's expectations
surpass its collective ability or willingness to pay, and yet
stakeholders have a hesitancy to set priorities, or to permit
consumers to choose tradeoffs that might place standard views
of safety second. This is particularly true when consumers exhibit
any evidence of cognitive impairment. Older consumers are more
realistic in their demands for a normal good quality of life
than are advocates, regulators, providers, and even their own
family members, though they may emphasize different priorities.
accepting limitations and sharing responsibility. A
goal of zero tolerance for adverse health outcomes has proven
impossible to achieve in nursing homes, undermines the spirit
of assisted living, and is especially difficult to enforce because
assisted living's essential components include social features
directed at broad social and psychological well-being. The Discussion
Paper summarizes two concepts-bounded choice and shared responsibility-which
may assist stakeholders, including citizens at large, in necessary
discussions about what outcomes are expected of assisted living
and the responsibilities of all parties for bringing them about.
Strategies for Action
Considerable pressure is mounting for national standard-setting,
or at least for requirements that states meet specific standards
in a model statute before using federal funds for assisted living.
Given the developmental state of the field, a slow approach to prescriptive
mandates would be prudent while the field is developing. Any action
at present should surely be at the state level, but we favor states
treading slowly in their own prescriptive mandates. Model state
statutes seem less useful than learning from accumulated experience
with diverse state approaches that presently prevail, a strategy
It is fruitful to consider how assisted living might be regulated
if it were viewed as more like home care than like nursing homes.
We also suggest that regulations and their enforcement can be used
to enhance non-regulatory quality assurance strategies such as consumer
information and empowerment, on the one hand, and provider-initiated
quality improvement efforts on the other. The Discussion Paper concludes
by discussing in greater detail a dozen suggestions.
Strive for approaches, guidelines and standards that pay significantly
greater attention to quality of life.
Consider how regulations and monitoring could affect achieving
the essential features of assisted living and resolving the
major challenges described in this paper.
Critically examine existing state assisted living regulations
and enforcement practices for their effects on the preceding
Consider whether there has been unnecessary spillover of existing
nursing home rules into assisted living, and at least for a
time evolve assisted-living oversight as independently as possible
from nursing-home oversight.
Develop actions that states can take to enhance consumer information
and understanding of assisted living.
Determine how negotiated risk contracting and individualized
care planning can be encouraged by and be compatible with regulation.
Keep the focus on the values inherent in assisted living with
training and dissemination of "best practices" all
geared to developing competence in the promotion of those values.
Find ways to address subsidies for shelter costs.
Incorporate into any standard setting activity an analysis
of impact related to monetary costs, resident autonomy, resident
rights, and livability.
Refine ways to measure the outcome of assisted living and
conduct research targeted at improving assisted living capabilities.
Determine how to support active family involvement in care
in assisted living.
Encourage community dialogue and consensus building.
Assisted Living at the Crossroads: Principles for Its Future
Why at a Crossroads?
Assisted living as a form of long-term care is at a critical juncture,
where decisions taken in the public and private sector will profoundly
shape its future. From little more than an idea in the mid 1980's
, this service sector grew to about 11,500 settings caring for well
over 500,000 residents by 1999 . Unlike the comparable growth of
nursing homes in the 1960's, which was largely fueled by Medicaid
payment mechanisms for low income people, assisted living expanded
largely through a private-pay market. Although as of July 2000,
thirty (30) states provided some public funding under Medicaid waivers
and other mechanisms for low-income people to receive care in assisted
living settings, in no state did Medicaid assist in payment for
more than 25% of the clientele and in many states the proportion
is much lower . Medicaid helps pay for almost 70% of nursing home
residents nationwide (Feder & Neifeld, 2000), whereas, according
to a 1998 study, only 19% of assisted living residents use any
other source of payment (for example, Medicaid, SSI supplements,
or insurance to supplement their own or family resources (Wylde
1998). Because assisted living was initially a private pay phenomenon,
regulatory oversight lagged behind development. Now with the large
numbers of citizens served and growing public payment, the interest
in quality standards and oversight is mounting.
Moreover, with the expansion of assisted living, serious concerns
and challenges have arisen about its quality. The alarm has been
sounded by consumer advocates such as nursing home ombudsmen and
by state regulators who have a general responsibility for regulating
health and long-term care. The worry has been fanned by media reports.
Since September 2000, lengthy and largely critical reports on assisted
living have appeared in the Philadelphia Inquirer (Tofani,
2000), Consumer Reports, the Washington Post (Goldstein,
2001a, 2001b), the New York Times, the Portland Oregonian,
the Charlotte Observer, and Time Magazine (Goldstein,
2001), to name a few. Collectively, this coverage alleges both neglectful
and insufficient care, as well as financial and resident retention
practices that mislead the public. At the same time, many of these
and other stories affirm that older people and their families like
assisted living, wish to stay there even when state regulators assert
they should leave for more protected settings, and on the whole
report high satisfaction. For example, a U.S. and World News
article , the previously cited Time story (Goldstein, 2000),
an article in the Los Angeles Times and one in the New
York Times (Oser, 2001) emphasize assisted living's positive
appeal to consumers.
Congress reacted to the quality concerns, ordering a General Accounting
Office report (GAO, 1999a); based on a four-state study, the report
fell short of suggesting federal oversight but raised concerns about
how well consumers are informed about assisted living and the nature
of typical contracts between providers and consumers. The Senate
Committee on Aging held hearings in 1999 and 2001 to examine whether
a federal presence is needed in assisted living regulation, and,
if so, what form it should take. Subsequent to the congressional
hearings held in spring 2001, the Senate Aging Committee requested
interested parties-including industry representatives and consumer
representatives-to meet to develop some suggested guidelines for
assisted living and report to the Committee on its progress in the
Spring of 2002. Committee members recognized that federal regulation
had failed to solve many quality problems in nursing homes, yet
expressed uncertainty about viable alternatives. Apart from the
Senate Aging Committee, a number of individual congressional members
have sought venues through other committees to hold hearings on
assisted living as it affects their districts.
The combination of rapid growth, media scrutiny, growing public
payment, Congressional attention, and quality concerns has created
a climate where change is likely to occur. Assisted living providers,
themselves faced by a crisis in obtaining liability insurance and,
in some instances, a problem with the bottom line, may modify their
goals, perhaps dropping heavier care or a commitment to aging in
place. Some regulators and advocates have begun to call for using
the standards that apply in nursing homes to judge quality in assisted
The solutions so far advanced in policy circles seem to revolve
around a limited repertoire derived from almost four decades of
experience in regulating nursing homes. These strategies as they
have been refined over the years have led to improvements in nursing
home care, though problems related to health and safety have far
from disappeared (GAO, 1998, 1999b, 1999c; OIG,, 1999a, 1999b).
But although regulatory oversight may help check the most egregious
problems in quality, more than three decades of nursing-home regulation
have failed to render nursing homes places where older people care
to live or where relatives willingly send them.
Assisted living evolved to solve a problem with nursing home care
that was strongly felt by consumers and their families. Although
holding no brief for poor care, we are concerned that in any rush
to regulatory protection, the very essence of what assisted living
sought to achieve for its consumers will be lost. Moreover the very
definition of poor or unacceptable care and results and of good
care in all settings needs to be re-examined in the light of the
powerful attractions of assisted living to consumers. This Discussion
Paper articulates issues that public authorities and private groups
should consider when determining "what is to be done about
assisted living." Undoubtedly, there will and should be a push
to balance the tension between consumer autonomy and public safety
inherent in all long-term care, and to send signals to the assisted
living industry to make mid-course corrections. But without overarching
principles for defining and seeking quality, the best of what assisted
living offers may be lost. We offer no clear answers. In many instances,
we ourselves are uncertain about the best way to proceed. Rather
we urge dialogue and no premature foreclosure on whom assisted living
should serve or how it should be staffed or organized.
Background: Evolution of Assisted Living
Assisted living is the product of idealism, pragmatism, entrepreneurial
impulses, and consumer hope. The result: a bewildering array of
programmatic forms, all bearing the label assisted living. The problems
assisted living sought to address are well documented: the sterility
and rigidity of nursing homes and the dread and despair they evoke
in prospective or actual users. The indignities of one-size-fits-all
solutions, the loss of privacy, the loneliness and lack of meaning
that nursing home life can inculcate are a recipe for avoidance
by consumers (and, incidentally, many health professionals) and
guilt for family members who accept so-called "placement"
of their relatives. Years ago, Elaine Brody (1973) likened the nursing
home to the Procrustean bed of the mythic hosteller who stretched
or cut the legs of his victims to fit his one-size bed. This chilling
metaphor is still apt. Some commentators believe that regulatory
efforts to improve quality of care in nursing homes ultimately reduced
quality of life.
One of the first articulations in public policy of assisted living
as it has come to be understood began in Oregon in the mid 1980's,
with the opening of two congregate residential settings, each composed
of more than 100 self-contained apartments. These settings were
built to nursing home standards in terms of corridor widths and
disability-friendly physical environments, and aspired to serve
people with the physical and cognitive disabilities that would have
rendered them likely candidates for nursing homes. The state of
Oregon conducted a demonstration project in 1986 to determine whether
Medicaid-waiver clients could be well-served in these settings,
and, having reassured itself, moved rapidly with task forces and
public input to create regulations to encourage and shape a new
long-term care form. The evolution of this model has been well-documented
(Kane, et al, 1990; Wilson, 1993). The hallmarks of Oregon-style
assisted living are: privately-occupied (unless by choice), apartments
with full bathrooms (typically with roll-in showers) and kitchenettes;
three daily meals served in a congregate dining room as part of
the basic price; and an expectation that people with the full range
of long-term care needs be accommodated. From the beginning, Oregon
provided Medicaid coverage for the service components of assisted
living for those financially eligible (room and board to be paid
out of income). This model focused on creating broad access in terms
of serving people with acuity similar to those eligible for nursing
A national evaluation of Oregon assisted living was conducted using
a longitudinal data to compare 600 assisted living residents in
38 settings to an equal number of nursing home residents in 31 facilities.
Based on data collected in 1995 and 1996, multi-variate analysis
controlling for resident characteristics showed that being in an
assisted living setting versus being in a nursing home made no difference
in some of the health-related outcomes of greatest concern to advocates:
functional status, pain and discomfort, and mental health symptoms
of depression and anxiety (Frytak, et al., 2001). Thus, setting
did not account for patterns of change in arenas thought sensitive
to the greater nursing availability in nursing homes. Other analyses
under way show that the assisted living setting was associated with
greater family involvement (Gaugler & Kane, in press;), social
well-being, and resident satisfaction .
At about the same time, a private-pay, high-acuity model of assisted
living was evolving on the east coast. Inspired by service settings
in the Netherlands, these communities are comprised of relatively
small private studio apartments or 2-bedroom suites (with private
rooms and shared living room, kitchen and bath; well planned public
space; and significant attention to socialization to encourage a
family atmosphere. Using a signature building style, this model
became branded as Sunrise Assisted Living. Subsequent entrants into
assisted living often chose elements of either the Oregon approach
or the Sunrise model, ultimately leading to many competing hybrid
models with varying levels of service and amenities designed to
serve a broad array of individuals with differing care needs and
Assisted living development accelerated after 1994 when the interest
of Wall Street and other investors who provided capital for growth
was captured. This resulted in a proliferation of congregate residential
care settings for care, sometimes licensed by states (typically
under residential care facility provisions) and sometimes not licensed
at all. As the term assisted living gained recognition, and with
the prospect of third-party coverage for its services, the existing
board home and residential care industry renamed itself assisted
living. For example, the Adult Congregate Care Facilities in Florida,
which are more numerous and serve more Floridians than nursing homes,
became called Assisted Living Facilities. Many of these failed to
meet the environmental standards that some see as intrinsic to assisted
living, and indeed Florida state regulation prohibited them from
seeking a service standard comparable to nursing homes. Similarly,
a large rest home industry in North Carolina was grand-fathered
in as assisted living. Some states use the term assisted living
for very small family homes that other states call adult foster
homes or some similar term. Residential care units attached to or
on the campus of nursing homes also began to and in some states
were required to call themselves assisted living; rarely were such
nursing-home-based entities comprised as private apartments (though
often they had private rooms and bathrooms), and typically the providers
aspired to moving residents through a continuum of care rather than
permitting (let alone encouraging) the option to "age in place"
in the assisted living wing. In Continuing Care Retirement Communities,
the middle level between independent living and nursing homes may
be designated assisted living, depending on the state. Some states
even license home-care services going into designated congregate
settings as assisted living. The Assisted Living Federation of America
broadened its representation in recognition of this variety by merging
with the National Residential Care Association and National Association
of Senior Living. The term, assisted living, is now so ubiquitous
that entities such as HUD, Fannie Mae, and the United States Veterans'
Administration incorporate it into their routine lending or contracting
cycles. In sum, a combination of self-designation by providers and
official designation by legislators and regulators has vastly expanded
assisted living and rendered its boundaries unclear.
Although some data have been published about the characteristics
of the industry, the variation has made describing it uncertain
at best (ALFA. 2000; Hawes, Phillips, & Rose, 2000; Hawes, Rose
& Phillips, 1999, Wylde, 1998). Precise numbers are hard to
come by, though some trends seem clear. Ownership is largely for
profit (75%). Indeed, not-for- profits, perhaps due to financial
limitations or to the need to garner consensus about a change in
direction, were slower to adopt assisted living. By now, however,
25% of the settings are nonprofit, with considerable state variation
in that proportion. For example, the Minnesota Health and Housing
Alliance, which is the affiliate of the national nonprofit trade
association American Association of Homes and Services for the Aged
has more housing-with-services members than nursing home members,
and recently produced a position statement endorsing for all of
long-term care many of the principles of privacy and consumer-centered
care associated with assisted living (MHHA, 2000).
Although large multi-facility providers are highly visible, ownership
is largely made up of single or small regional providers. In 2000,
the largest 25 providers in the United States accounted for 23%
of the properties and 16% of the operational capacity. Of the national
companies, some are public companies devoted solely to assisted
living (Assisted Living Concepts, Alterra, Sunrise Assisted Living),
others have their roots in the hospitality industry (Marriott, Hyatt),
and still others were spun off of or brought key management from
the nursing home industry (Balanced Care, Emeritus, Atria). And
among the national companies, some were privately held and others
were publically traded. The first dedicated assisted living company
went public in 1994, and by the year 2000, there were 14 publicly-traded
companies offering assisted living, three of which also provide
nursing-home care (Price Waterhouse, personal communication). The
entrepreneurial effort presented by companies going public provided
the capital that spread the assisted living models after more than
a decade of very modest growth, particularly the high acuity, high
amenity models represented by both the Oregon and Sunrise models.
But it also brought injudicious growth, restive stock holders seeking
quick returns on their investment, prices for services too high
for persons with modest incomes, and financial trouble for many
of the companies.
The result of all the activity since the mid 1980s means that assisted
living enters its adolescence with extraordinary variation within
and across states, including in: size, physical environments, target
clientele, typical staff patterns, usual length of stay, price,
and public subsidy. Because assisted living services are viewed
as home and community-based care rather than nursing home care,
it is feasible for states to subsidize these services under Medicaid
waivers and other programs, leaving the room and board for the consumer
to pay out of income. Some assisted living residents truly approximate
tenants renting apartments in housing with services; others occupy
what would be recognized more as rooms in boarding houses with services
attached; and still others (though fewer) can be said to be living
in institutions unworthy to fall under the home and community based
care classification because they resemble traditional nursing homes.
Level of tenant need also varies enormously, which in turn makes
it difficult to promulgate staffing and other requirements. Table
1 illustrates schematically the implications of various tenant characteristics
for service requirements. The actual services provided or arranged
must be sensitive to the functional abilities, cognitive abilities,
and medical needs of the residents. The table shows the wide range
of needs that can be found in assisted living. The table uses illustrative
ADL and IADL impairment levels to characterize functional dependency.
In actuality some states may limit assisted living from serving
residents with some of those needs.
Table 1. Service Implications of Various Tenant Impairment Levels
(Nursing home replacement)
Level of physical impairment minimally impacts ability to perform
T 0-1 ADLa dependencies
T 1-2 IADLb dependencies
T needs assistance with 2-3 IADLS
Level of physical impairment adversely impacts ability to perform
T 2-3 ADL dependencies
T 3-4 IADL dependencies
T needs assistance with 3-4 IADLs
Level of physical impairment significantly adversely impacts ability
to perform self-care, e.g.:
T 4 or more ADL dependencies
T 5 or more IADL dependencies
T needs assistance with 5 or more ADLs
T needs assistance with 6 or more IADLs
Level of cognitive functioning adequate to survive independent of
Level of cognitive functioning impacts ability to survive independent
of ongoing oversight (e.g., mild dementia)
Level of cognitive functioning significantly adversely impacts ability
to survive independent of ongoing oversight (e.g, mid-to late-stage
Medical/acute care needs
T Chronic health problems may be present and treatment may be ongoing
T No need for ongoing specialized equipment/procedures
T Chronic health problems are typically present and treatment ongoing
T Minimal need for ongoing specialized equipment/procedures to intervene
T Medical/acute health care needs typically present and need ongoing
T Need for ongoing specialized equipment/procedures to intervene
Source: Adapted from Assisted Living: Re-Conceptualizing Regulation
to Meet Consumers' Needs and Preferences. Washington: American Association
of Retired Persons)
a ADLs (Activities of Daily Living) include: eating, dressing,
bathing, toileting, transferring, continence, and walking.
b IADLs (Instrumental Activities of Daily Living) include:
managing money, using the telephone, shopping, housekeeping, cooking,
managing medications, doing laundry and using transportation.
The variation in assisted living continues to be largely shaped
by three forces: 1) the goals, vision, and business projections
of providers entering the market; 2) state regulations that permit,
prohibit, or require certain characteristics of the industry, and
may influence the size necessary for viable projects; and 3) consumers'
purchasing behavior in various markets, which, for example, may
have nudged some assisted living providers into accommodating higher
acuity than they originally intended, or have influenced others
to cap disability levels or to segregate people with dementia or
heavy care needs to better attract or retain well older people.
Despite its many guises, assisted living is far from being the unregulated
entity sometimes portrayed in the media, assisted living is shaped
and constrained by the rules of the states (and to some extent localities)
where it operates. The setting is, to a far greater extent than
any private home, regulated by building codes typically far more
stringent than other public use buildings. Further, whether it is
through licensing of services only or licensing of a setting with
services, assisted living is already held to a set of standards
set by the states. These standards often already more heavily influence
provider behavior than consumer preferences or business goals.
A societal response is needed to channel positively all the developments
of the last decade so as to keep assisted living's original promise
to consumers while protecting them against confusing marketing claims
and poor care. Because many consumers could be considered vulnerable
adults, and many are or become cognitively impaired, states correctly
perceive a public obligation to protect assisted living consumers,
regardless of their payment source. We argue that states are also
obliged to protect what is good in assisted living and to preserve
or at least consider the merits of the reforms assisted living set
out to make. At this writing, the Supreme Court Olmstead decision
is about two years old, and states are now struggling to evolve
plans for long-term care in the most integrated, least restrictive
settings for people with disabilities of all ages. Many seniors
needing care have downsized their homes and wish to shed routine
responsibilities for home maintenance.1 For them, assisted living
could be an integrated community setting like other apartment buildings.
Or, with hasty policy mis-steps, assisted living could become another
institution barely distinguishable from conventional nursing homes.
This latter result would indeed represent a failure in the post-Olmstead
Three-Legged Stool of Assisted Living
Assisted living has many definitions. The most agreed-upon points
are that it is a group residential setting that is not licensed
as a nursing home and where personal care, household services, and
routine nursing services are provided or made available for persons
with functional impairments . Some would add "in a homelike
setting" to the definition and some would add elements of a
philosophy that promotes choice and independence in the consumer's
living situation, but these additions reflect an ideal of some more
than an achieved characteristic of all entities called assisted
living. In a 2001 attempt to arrive at a definition, the ALFA Executive
Committee approved the following language: "Assisted Living
is a residential setting that offers choices in personal care and
health related services." This definition is so all-encompassing
and vague that it offers little insight into the essence of assisted
living, or how it differs from a standard nursing home, on the one
hand, or an independent living apartment complex on the other.
Figure 1 likens assisted living to a 3-legged stool, each leg of
which is essential to the idealized concept (Kane, Kane, & Ladd
1998). The first leg is a residential setting in both the resident's
private space and the shared public space; the second leg is a philosophy
that promotes dignity, choice, independence, privacy, individuality,
and "normality" in everyday life; and the third leg is
a service capacity to meet recurrent, routine needs for help (some
of which can and some of which cannot be scheduled) and an ability
to arrange for more specialized services that may be needed intermittently.
Each part of the tripod is essential to an ideal of assisted living,
and regulatory and policy reform will need to consider each.
Critics of assisted living, especially in the media, sometimes
dismiss environmental amenities in assisted living as though pleasant
surroundings and furnishings in cheerful, functional apartments
with ordinary residential features like refrigerators, stovetops,
and microwaves are mere marketing ploys that are beyond the point
of what care is all about. On the contrary, we hold that these physical
environments are intrinsic to the theory of assisted living. They
are expected to promote functional abilities, meaningful activity,
sense of familiarity and security, and well-being. In other words,
the residential environment can and should be designed to further
both good functional outcomes and good quality of life.
Figure 1: Three- Legged Stool of Assisted Living. Modified from
Kane, Kane, & Ladd 1998.
As already stated, physical environments vary in assisted living,
and some fail to meet the ideal expectations for privacy, function-enhancing,
and life-enriching features. Shortfalls are found especially in
extant residential care facilities grand-fathered in as assisted
living, and even more particularly in programs designed originally
to serve SSI recipients. However, assisted living, on the whole,
has done a good job on re-designing physical environments, and has
set a new standard for privacy and normal residential environments
for people with major long-term care needs. Not surprisingly, the
assisted living industry is reluctant to impose expensive environmental
standards on its members that some would find difficult to meet,
and only a handful of states have been assertive in limiting the
use of the term assisted living to private occupancy apartments.
Still, the Assisted Living Quality Coalition (a consortium of the
Alzheimer's Association, the American Association of Homes and Services
for Aging, the American Association of Retired Persons, the American
Senior Housing Association, and the Assisted Living Federation of
America) emphasize and encourage environmental features that are
radically different from nursing homes (Assisted Living Quality
Coalition, 1996). It is unlikely that the clock will be turned back
on new environmental expectations. Increasingly, as nursing-homes
replenish their stock, they are moving at least to private rooms
and bathrooms, as well as to smaller rooms and cluster areas that
are more residential in nature.
"Privacy except by choice" has few overt opponents, although
many express concern over the cost for both public and private pay
consumers. Available cost data would suggest privacy is achievable,
but many issues remain unresolved. Of greatest concern is the use
of Supplementary Security Insurance (SSI) standards to set room
and board rates, a topic to which we will return later. But, there
are also reported concerns about the possible negative impact of
privacy on social isolation and on the physical well-being of those
with dementia. Given the priority privacy is given by actual consumers,
this is an area worthy of more serious attention if it is to be
held forth as core to assisted living.
Tension also arises, however, over other environmental features.
For example, some stakeholders doubt that older people with severe
physical disabilities or memory problems should have access to ordinary
environmental features such as hot water that could scald, showers
where they could slip, light bulbs and sockets, ample storage space
where various personal supplies can be stashed; cooktops and microwaves,
cutting knives, wine and beer, and the like in their apartments;
or unsupervised access to patios and other outdoor spaces. Collective
thought is needed about whether it is necessary or proper to deprive
residents of such niceties lest they injure themselves, especially
since people with disabilities in their own home have no such publically
imposed strictures. This dilemma introduces a fundamental question
that will recur as regulation and quality in assisted living is
considered. Is an assisted living apartment more like home, where
even the most paternalistic professional would be loath to reshape
the consumer's environment (though they may urge moving to a nursing
home for a "safer" setting.)? Or, is assisted living more
like a nursing home, where residents are protected as much or more
than preschool children (who, after all, have access to swings and
monkey bars) and where the new resident is often provided with written
state rules prohibiting extension cords, most electrical devices,
candles, and other things that are taken for granted in private
homes? Is a mid-point position possible so that individualized modifications
might render environments safer for the few without being sterile
for all? What level and type of disability justifies such intrusiveness?
And, if accidents occur at the same rate as they do in private homes,
is the assisted living community to be judged as having quality
The discussion of environment leads to philosophy. The validity
of the underlying principles of assisted living-choice, dignity,
privacy, independence, individualization, normal life styles-seems
widely recognized, and has come to be espoused in many state statutes,
either for assisted living or for long-term care in general. The
principles are more easily enunciated, however, than implemented.
There is disagreement about the ability to achieve these principles
when consumers have significant health problems, severe physical
disabilities, or are cognitively impaired. There is also disagreement
about the priority that should be given to these values if they
lead to what professionals or families see as unnecessary risks
or seem to jeopardize health and safety.
In practice, the enhanced physical environments enable many of
the values over and above the obvious one of privacy. More choice
of routine, use of space, and activities, and more exercise of desired
independence is made possible. Some of the principles seem better
observed in practice than others. The notion of choice and autonomy
in initial service planning is typically quite well implemented.
On the other hand, true individualization has been hard to achieve.
To truly individualize a service plan requires a determined mind-set,
a set of skills, and significant organizational flexibility. Both
providers and regulators would do well to consider what sorts of
expectations and training might promote such individualization.
To take a trivial example, some states mandate that snacks be served
centrally at several times between meals, undermining the likelihood
that individualized service planning build in the availability of
snack food that residents most enjoy in their own refrigerators
and cupboards, along with a care-plan that ensures any necessary
assistance or cuing to be sure that the resident is able to enjoy
the snack. A more powerful example would be a regulatory or provider
stance that permits absolutely no leeway for the resident to execute
decisional autonomy in situations having any potential for adverse
consequences when the resident has any documented memory loss or
cognitive impairments. The irony should not be lost that these individuals
have seldom had their civil rights restricted legally by virtue
of being adjudicated incompetent to make decisions. Certainly, few
advocates for older people consciously view residents as institutional
inmates without full civil rights except those given explicitly
to them by special rule; the rhetoric and principles of advocacy
programs often say quite the contrary! Yet, in practice that loss
of rights and "institutionalized" status is what occurs
when vulnerable people are subject to far-reaching, professionally-controlled
plans for care, and when their lives are dominated by restrictive
rules or lived out in socially impoverished environments.
Thus, the philosophy of assisted living is sorely pressed around
two issues. First, is the tension around protecting safety, which
is felt as an imperative by providers, families, and regulators
alike. Striking the balance between safety and autonomy is difficult
because little creative thought has been devoted to how to give
reasonable attention to safety while preserving autonomy. Indeed,
research knowledge about the likelihood of various risks and the
efficacy of orthodox approaches to reduce risks is virtually non-existent.
A second, related issue is when, if ever, residents should be deemed
"inappropriate for assisted living," required to move
out, or encouraged to live in a more protected setting. The slogan
"aging in place" was at one time elevated to a principle
of assisted living, expressed in a view that residents should not
be required to leave assisted living against their will unless they
needed the intensity of a hospital or had absolutely no ability
to benefit by assisted living (e.g. those who are comatose or in
vegetative states). Certainly, the principles of choice, independence,
and individualization suggest that aging in place is desirable.
However, staff need the skills to be able to provide or arrange
the services needed, as well as to minimize behavior that might
disturb others in a group settings. Also regulators would need to
abandon rules that require residents to leave their homes in assisted
living under certain conditions, for example, being unable to transfer,
being incontinent, being confused and prone to wander.
Over the past several years, regulators in various states have
required that specific residents leave assisted living against their
will though the provider has been willing to retain them, and multiple
court cases have been joined testing the right of individuals to
stay in settings when the state deems it necessary for them to leave.
Typically, the state position prevails in court, and some providers
believe the ideal of "aging in place," should be substituted
for an ideal the facilities should clearly disclosure before move-in
the conditions under which they will not promise to retain residents.
A twist on this is found in some state regulations where the facility
must determine upfront what kind of assisted living "level"
it wishes to offer, and meet accelerating regulations for each level.
A Michigan court case in the Year 2000 (Wallace v. Michigan Department
of Consumer Services) was decided the other way, i.e. in favor of
the resident and family, resulting in a new Michigan law stating
three conditions for the resident to stay: resident and key family
members understand risks and conditions and wish to stay; the provider
is willing to continue care; and the primary care physician believes
the health care can be managed appropriately in the setting. Thus,
different ideas are circulating, including: a strong endorsement
of "aging in place;" a strong endorsement of providers
deciding and disclosing the conditions under which residents can
stay; a view that regulators should establish various structural
and process standards under which residents of varying disabilities
can stay; and the promising model embodied in the Michigan statute.
Before further regulations are cast, these competing approaches
need careful attention.
Perhaps the most difficult part of the assisted living vision to
achieve is the needed service capability, especially at times of
shortages of skilled workers in all types of long-term care. It
is useful to divide services into two types: 1) routine services
almost always needed in assisted living; and 2) specialized services.
Routine services. Routine services, whether delivered by assisted
living staff or separate outside contractors or vendors, include
personal care (e.g., bathing, dressing, toilet assistance, transferring,
and assistance with eating), ambulation assistance, medication assistance
and management, safety supervision and reminders for persons with
cognitive impairment, and household services, such as cleaning and
laundry. Some such services-for example, cleaning, laundry, medications,
transferring, and usually bathing (except for unexpected incontinence)
can typically be scheduled. Other help cannot be as readily scheduled,
such as providing general supervision for safety purposes, dealing
with acute illnesses such as heart attacks and strokes, or handling
emergencies such as falls and accidental injuries.
To meet routine needs and still deliver affordable care in homelike,
autonomy-enhancing residential settings, many assisted living providers
have championed such concepts as: the universal worker, which allows
of multiple tasks to be performed by a single worker who also comes
to know the resident; and delegation of nursing services, which
allows for nursing services to be performed by non-licensed personnel
without close nurse supervision as long as a nurse has taught them
how to perform the service and certifies that they know how. The
nurse delegation issues, particularly important for cost-effective
medication management, remain an area of some controversy. A state-wide
study in assisted living settings in Washington state showed that
those assisted living settings opting to use nurse delegation had
fewer nursing errors and problems than those choosing not institute
nurse delegation programs. The hypothesized explanation for the
results is that in assisted living programs without nurse delegation,
nurses were often largely out of the loop and care staff were not
knowledgeable about the regimens they administered without delegation
To preserve the philosophy of assisted living while delivering
the care, other strategies have included individualized, negotiated
service plans, and negotiated risk agreements. The latter (sometimes
interchangeably called negotiated risk contracts, managed risk contracts,
or managed risk agreements) are signed agreements between providers
and consumers and other involved parties that state that an informed
consumer chooses to accept risks associated with his or her care
in order to maximize certain preferences. Consumers who prefer to
partially or fully take their own medicines, who prefer not to adhere
to a diet or medication regimen, who decline to use walkers or wheelchairs
are examples of those who may be candidates for such managed risk
contracts. All these ways of handling services are differentially
implemented, understood, and endorsed across the assisted living
industry and by external regulators, payers, or advocates. Something
as simple as a universal worker may be contentious because it involves
a tradeoff between specialized skills and credentials versus the
ability to deliver on a wide range of services even in a small setting
where a large, differentiated staff could not be supported. Given
the present experimentation with different forms to deliver service
and the shortage of service personnel in general, it would seem
to be important to be reflective before imposing staff ratios and
patterns based on the status quo. At the same time, much thought
is needed to the kind of recruitment and on-the-job training needed
to support the wide range of roles routinely required of care staff
in assisted living. A recent study with a large national sample
of assisted living facilities and residents found that facilities
employing nurses were less likely to discharge residents to higher
care settings (Hawes, Phillips, & Rose, 2000). This finding
offers an important hint that the organization must be geared to
plan chronic care and deal with emergency health situations. The
findings should not be extrapolated, however, to lead jurisdictions
to mandate specific nursing levels or ratios or precise arrangements
to achieve that capability, given the promise of some of the extant
models that have developed heightened capacity of line staff and
employ delegation practices that appear to utilize the time of expensive
licensed nurses effectively.
Specialized services. The challenge of providing specialized services
and care is one that assisted living shares with nursing homes.
From time to time, residents will need dentists, physical therapists,
occupational therapists, speech therapists, psychologists, spiritual
advisors, audiologists, optometrists, oculists, podiatrists, alcohol
specialists, nutritionists, among others. Like seniors in their
own homes or in nursing homes, they may have their own dentists
and other health specialists, pastors, psychotherapists, and so
on. But, also like many other seniors in the community, they may
have no access or only spotty access to the help that would be useful
or even lack awareness of what specialized services might help.
Assisted living settings should be able to provide the early warning
assessments that specialized services are needed, and linkages to
those services. This requires training of assisted living staff.
Realistically, however, in some communities, even after the need
is recognized, finding the appropriate professional is impossible,
and in other instances, paying that person is a challenge. To meet
the need for specialized services, it will be necessary to counteract
confusion, poor communication, conflicting wishes among resident
and various family members, lack of resources, and, sometimes, unwillingness
to expend resources. Community physicians and other community professionals
also need to be part of this solution. Certainly it is more challenging
to perceive the need for and bring professional services to assisted
living than to nursing homes, which are largely modeled on hospitals
and which may have in-house physicians and therapists, but it should
be less difficult than doing so in the context of home care. Depending
on the mix of residents in assisted living, many may need active
management of health conditions, but no evidence at present suggests
that the care should literally be on-site, or that a nursing-home
style medical director model is either necessary or even a good
Assisted living settings can adopt a variety of ways to achieve
the three elements of the assisted living tripod, and given the
variation in resources and prices among assisted living settings,
different approaches are to be expected. Moreover, continuing creativity
should lead to new ideas about how to construct the residential
environment, how to create the service capability, and how to put
the philosophy in action. Below we suggest some minimum expectations
that could be established for each area.
Essentials for residential environment. In this area, the expectations
pertain to structure (the actual physical environment) and process
(the way that environment is used). Private space should include
a bedroom and full bathroom that is unshared unless the resident
wishes, and individual temperature controls. The space should be
designed to enhance functionality and mobility for people using
assistive devices including wheelchairs The resident should have
control over the use of this private space. Public space must similarly
be designed to permit access to indoor and outdoor spaces.
The above essentials are minimum only. Private spaces could and
often are comprised of apartments, which themselves vary in number
of bedrooms, features in the kitchen, cable television, and the
like. Similarly the public space could include a range of features,
such as gymnasiums and swimming pools, gardens, porches, and solariums,
and the like. These details should be a matter of consumer discretion,
since they too vary in the type of housing they wish and can afford.
The landlord's obligation for the property includes keeping the
environment pest-free, assuring it is properly heated, cooled, and
lighted, and that appliances and fixtures are in working order.
The consumer's obligation is to pay the rent and keep the property
in reasonable condition.
Resident control over the use of the environment is not easy to
guarantee. To take a few trivial example, some states require that
all garbage pails must be metal: apparently, somewhere it was decided
that plastic, wicker, and wood create unacceptable hazards. Similarly,
it is not unusual that if the residents' private quarters fail to
meet some third party's standards for safety or cleanliness, living
space may be cited as too cluttered, containing unsafe objects (such
as unsecured over the-counter medications such as aspirins, unsecured
cleaning products or cosmetics, or windows without screens). Multiply
this by many other examples, and the degrees of freedom of the resident
in her space disappears.
Not all states require the standard of privacy and function-enhancing
features suggested as minimum and some have rules that restrict
resident use of environment. These should be revisited. Obviously,
new environmental mandates make compliance difficult for existing
programs, and mandates for private rooms are less practical if the
room and board price is pegged artificially low. However, this topic
is so important to consumers that it must be faced directly. (If
privacy and wheelchair accessibility became mandated as a standard,
it would be reasonable to grandfather in those already holding the
license without meeting the standard).
Essential service capacity. The essential capabilities here are:
ability to perform or arrange a competent initial assessment of
needs (not just medical) and preferences and develop an individualized
plan; the ability to provide kind, capable, and responsive care
7 days a week and 24 hours a day. It also includes the ability to
identify changes in physical functioning and condition and to arrange
for specialized assessments and interventions; the ability to provide
or arrange meals and housekeeping; the ability to respond to emergency
situations, and the ability to provide or arrange routine nursing
services, including medications management. (We sharply differentiate
generic nursing services from services of a registered nurse; "nursing
services," therefore, should not be construed as services that
can only be performed by a registered or licensed nurse.) It may
be unhelpful to establish a staff-to-resident ratio or requirements
for people with specific training (e.g., nurses) or job descriptions
(e.g., activity director) to attempt to secure this capacity. Indeed,
it would be more useful to consider how we would know that an individualized
care planning capacity is in place, what evidence we would seek
for its results, and what are the key components for competency-based
Essentials for implementing the philosophy. The essential signs
that the philosophy has been implemented are: residents preferences
are known; attempts are made to honor resident priorities and help
them implement their preferences; and residents are, as much as
their abilities allow, in control of their lives, their schedules,
and their private space. Rules for conduct in private space should
be minimized, and no bedtimes or meal-times should be imposed on
the individual (though a resident choosing a late bedtime who needs
substantial help may need to compromise on the details of the way
help is given). Private environments may be made safer for persons
with cognitive impairment (for example, by disconnecting or removing
appliances), but the burden should be on providers and regulators
to show it is necessary to restrict a resident rather than on the
resident and her family to prove she can use the ordinary tools
and equipment found in most households.
Maintaining and improving the 3-legged stool that, we argue, makes
assisted living a desirable long-term care option while providing
some assurance of quality presents some major challenges, which
we discuss next. Our goal in laying out these inter-related topics,
is to present the complexity of addressing these challenges in meaningful
Balancing Safety With Autonomy and Quality of Life
The tension between providers', regulators', and even families'
perceptions of safety, on the one hand, and consumer perceptions
of quality of life and personal choice, on the other, are palpable
in assisted living, as in all of long-term care. In nursing homes,
the thrust is and always has been towards perceived safety. Although
quality of life is valued in nursing-home regulations, it is always
qualified by the caveat "as is consistent with health and safety."
The Pioneer Network in Long-Term Care, a group that is actively
advocating for culture change in nursing homes, recommends changing
that balance, and takes as a principle that "risk is a part
of normal adult life (Lustbader, 2000)." However, regulatory
momentum seems to be in the opposite direction with broadened definitions
of abuse and neglect. Given this backdrop, the assisted living challenge
is to determine the kind of practices that will be permissible,
the outcomes that are tolerable, and the kind of regulatory oversight
needed to promote the positive values of assisted living. The order
of thinking must be altered to give quality of life much higher
priority, while offering reasonable confidence to consumers and
their families that care needs will be met, and that care will not
be neglected under the guise of consumer choice.
The tension plays out around many specific topics. For example,
consider incidents and accidents, perhaps the most common of which
is a fall, with or without injury. The occasional fall-and particularly
the first fall in a person with no known risk factors who trips
over the leg of a table-mate's chair during dinner-may be understood
as an unpredictable and unavoidable accident. The fall in an effort
to get up from a toilet seat where a frail older person was placed
and left unattended for a significant time almost certainly is an
instance of poor care. But in between these extremes are infinite
variations with many nuances. Some people who may be at risk of
falling prefer to use canes and walkers rather than wheelchairs.
Some people who do not want to wait for the arm of an attendant,
insist on going outside alone, prefer clothing that decreases their
safety of movement, or insist on walking where there are no sidewalks
or paved surfaces. Should they be prohibited from this freedom on
penalty of eviction? (If evicted, they may move into a community
setting with no help at all, or to a nursing home where they may
lose the opportunity or even the desire to move around.) What about
the person with Parkinson's disease who falls with regularity, sometimes
with injuries that draw blood? What about the person with several
broken hips to her credit? Should they be "grounded" from
walking without assistance? Required to move? If the answer is "no,"
what should a regulator look for to determine whether monitoring
the need for and delivery of care is adequate? A note in the chart
that shows staff is aware of the condition? A negotiated risk agreement
that identifies the risk and proposes a strategy to reduce the possibility
of injury? A sign that family were informed and involved in decision-making,
particularly if consumer is cognitively impaired. Should we assume
ambulation independence a sign of good care as long as no injuries
ensue, but bad care when injuries occur? If rates of both the good
things (in this case, ambulation rates) and the bad things (falls,
and fall with injury) are calculated, but if these are used to compare
assisted living programs (as is now the case for fall rates in nursing
homes), can case mix be appropriately taken into account given the
variation within and across assisted living settings and, if so,
Similar examples could be promulgated for other common problems
in long-term care such as weight loss, skin condition, "elopement"
of wanderers. We know, for example, that short of force-feeding,
some older individuals do loose weight because of appetite loss
and drastic reduction in food intake. Again what constitutes evidence
of good care? Signs that the person has a medical consultation to
rule out disease as a reason for weight loss? Determination of whether
a treatable depression is at the root of the problem? Evidence of
efforts to entice the resident to eat by an individualized plan
to tempt her with favorite foods? Proof of tasty, well-prepared
meals? If these efforts fail to bring about weight gain, must the
resident be force fed or evicted? As for skin condition, is there
any room for toleration of decubitus ulcers in patients with specific
conditions, such as diabetes or end-stage cancers or end of life
in general, when system shutdowns lead to skin breakdown? Regarding
"elopement," should a resident prone to eloping be refused
as a potential resident for fear of liability or sanction if such
an event occurs?
Fear of sanctions, liability and public censure act as powerful
incentives to give priority to safety even when the resident is
mentally competent to exercise autonomy. If the resident has substantial
cognitive impairment, balancing safety and autonomy is more difficult.
The resident is considered vulnerable and her ability to make truly
autonomous decisions at all is in doubt. Although practitioners
know that many-perhaps most--people with Alzheimer's disease or
stroke-related dementia have preferences that they can make known
verbally or non-verbally, providers, regulators and families alike
are extremely reluctant to risk accusations of neglect, abuse and
poor care. We do not know what evidence of these preferences held
by people with dementia would be convincing enough to allay concerns
about poor quality of care. Nor have we addressed the extent to
which surrogates, such as family or friends should be empowered
to decide about risk-taking based on their presumed knowledge of
the individual's likes and dislikes. Should states legitimize negotiated
risk agreements developed by surrogates on behalf of the consumer
who is substantially confused? Should negotiated risk agreements
entered into by sufficiently competent consumers be revoked if the
consumer deteriorates cognitively to the point that she no longer
understands the consequences of the risks she previously assumed?
What other strategies might be developed to facilitate the exercise
of autonomy among those cognitively impaired? What mixture of process
standards and outcome expectations should be developed?
Under commission from the Assisted Living Federation of America,
Burgess prepared a legal analysis and a cautious endorsement of
providers using negotiated risk vehicles in what he saw as an unsettled
area of law . It is clear that more work would need to be done in
this area if this strategy is to be an effective tool for better
balancing autonomy and safety concerns. At that time, fifteen (15)
states included negotiated risk agreements in their assisted living
rules. Yet little consensus can be found on how such vehicles should
be used in a quality assurance system, how negotiated risk would
be combined with a "comparative outcomes" approach to
quality assessment, or what training is needed for personnel using
them and regulators inspecting them after the fact (Wilson, Burgess,
& Hernandez, in press). In the meantime, it is clear that people
with some cognitive impairments are the ones who may be at greatest
risk when they exercise their remaining independence. These individuals
are frequently found in assisted living settings, and excepting
them from opportunities for choice would seem unduly restrictive
at a time when persons with moderate and severe mental retardation
have gained the right to much increased autonomy. A way needs to
be found to build upon the preferences the person with Alzheimer's
disease is still able to express, any documented history of their
lifelong preferences, and the views of their legally empowered guardians
or surrogate decision-makers to apply benefits of negotiated risk
contracting to them as well.
Reconciling Individual and Community Perspectives
Meeting residents' individuality and social needs. Assisted
living ideally serves an individual's need to exercise personal
preferences, pursue interests and activities meaningful to them
within their abilities, and enjoy a zone of privacy where they can
be alone, together with family or friends, and surrounded by their
own possessions. Assisted living also ideally helps meet an individual's
need for community, where they have a cushion against isolation,
can associate with others, and can experience group activities ranging
from informal dining experiences and casual encounters to activities
planned by the assisted living community. All people have needs
for solitude and for society and affiliation, though some may emphasize
one pole over the other.
Assisted living programs can help people meet their needs for affiliation
and social involvement through internal activity programs, efforts
to help residents maintain their connections to external communities
(e.g. church, civic clubs, sports interests, family activities),
and encouraging meaningful resident-staff and resident-resident
relationships. This is by no means easy, but helping residents experience
their individuality is even more difficult, calling for individualized
discussions of resident interests, life experiences, and preferences,
and determining ways to help them carry these out. Although service
planning and care planning tends to establish resident choices,
the ability to choose is within limited boundaries, and developing
truly individualized plans to facilitate what interests a resident
calls for creativity, attention, and skill. Moreover, promoting
individualism conflicts with promoting community.
From a regulatory viewpoint, attendance at activities is often
emphasized and equated with pleasant socialization. Resident's needs
for stimulation and community should not be ignored, but the planned
group activity is often a simplistic solution. This is another arena
where consideration is needed regarding what constitutes acceptable
levels of activity and social involvement, as well what constitutes
enough privacy and solitude.
Our plea for increasing the capacity for individualized approaches
seems to go against the current trend for guidelines and standardized
care protocols. The point that should be emphasized, in our opinion,
is that protocols are desirable for medical and health-care interventions,
but not for people's very lives. It makes complete sense to have
protocols for proper administration of medications or for transferring
a person in and out of bed. A protocol for when people should get
in and out of bed and how they should spend their waking hours when
not receiving care is counterproductive to a philosophy that respects
individual wishes and preferences.
Individual interests versus community interests. Inescapably,
assisted living has elements of group living, similar to any apartment
complex or neighborhood where tenants must behave within boundaries
acceptable to their neighbors. In fact, these group-living constraints
are exaggerated because the assisted living residents will usually
eat together and often encounter each other in the public spaces
and at activities. Actually, the setting takes on the larger role
of community precisely because contact with the larger world typically
shrinks as impairment levels increase. The rights of one resident
to remain in the community may conflict with the desires of other
residents for a serene environment and perhaps with those other
residents' property rights. Residents who are cognitively intact
may be intolerant of those who are cognitively impaired, and especially
those whose behavior creates disturbances, or is menacing, or frightening.
Little attention has been given to teasing out the priorities that
should be given in these situations. Surely, group pressure should
not be used to ease out a resident who looks ill, eats in an unappetizing
way, or otherwise reminds the community members of their own mortality.
Yet, staff must surely bear major responsibility for structuring
the day and monitoring the behavior of residents with dementia so
they will not be disturbing to other residents (whether in integrated
assisted living settings or special units for dementia). Move-out
policies are often a matter of regulation. At times, assisted living
is criticized for retaining residents "who should not be there,"
and at times it is criticized for evicting a resident. Without knowing
the answers, we think the issues of how to enhance socialization,
how to enhance individuality, and how to regard the community versus
the individual need attention before criteria are developed to judge
the adequacy of the program.
Mainstreaming versus stratification. One way of managing
negative community feelings about other residents is to develop
specialized units for dementia or for people with very heavy care
needs, or both. This also renders it more efficient to provide supervision
and disability-appropriate activity for the person with dementia,
and to provide nursing care for those with high levels of disability.
Locked units permit concerns about wandering to be broadly addressed,
and the ability to address such issues is not to be lightly dismissed.
But clearly such special care units have their limitations as a
solution. First there is the problem with selection and retention
criteria - with both the level of confusion, as well as the existence
of other physical or health related problems. Then too segregation
may undercut the vision of assisted living as a place to which a
tenant has moved voluntarily and can stay as long as she desires.
In efforts to assure safety the environment, the special care units
may eliminate many of the very things that make assisted living
residential. It certainly undercuts the importance of establishing,
decorating, and becoming attached to one's own place. And while
it may make it more efficient to deliver specifically designed care,
it doesn't necessarily make it easier for staff to deliver it in
such a way as to meet the even modest expectations of consumer families.
What combination of selection criteria, size, design, program structure
and staff element would best demonstrate the efficacy of special
care units? And in what circumstances would integrated units serve
as well or better? A single answer is unlikely to emerge because
size and complexity of the building will influence the value of
a specialized dementia unit, and because the community need for
such segregation is highest when residents do not have private rooms.
It would be useful to develop criteria to influence practice based
on increased knowledge of the circumstances under which residents
with and without dementia thrive.
Establishing Expectations Consistent with Willingness to Pay
Great expectations. We as a society are conflicted over what we
say we want and what we are able or willing to pay for it. This
conflict is evident in every domain - public education, health care,
urban renewal, public transportation, parks and recreation, national
forests, preservation of wildlife and habitats, eradication of disease
and so forth. Crudely put, we often exhibit champagne taste on a
beer budget. This is true for many in their private lives where
the assumption of debt to pay for items we believe we need to live
a quality life is the American way. It is also true for matters
of public social policy where lawmakers have a penchant for creating
unfunded mandates, as opposed to asking taxpayers to pay for what
they say they want or to set priorities and build consensus where
choices are tough to make.
Health policy is a good example of this problem. While it is widely
acknowledged that the United States has excellent health care available,
it is also recognized that access varies and a multi-tiered system
operates where many people have little access to the best. For a
select few with unlimited financial resources or excellent private
insurance plans without co-pays, prior authorizations or stringent
criteria for specialist use, the latest in treatment approaches
and medications are readily available, and satisfaction levels are
generally high. Far greater numbers of individuals and families
are in less satisfying circumstances. For those with health insurance,
the amount and type of coverage has been an arena of serious concern.
Reduced access to specialists, new treatment approaches, and newer
drugs are greeted with dismay, but so too is an increase in co-pays.
Oddly, in many states, those who qualify for Medicaid have fewer
limits on the amount and type of care they get compared to those
with private insurance, but to be eligible for Medicaid the individual
must have a very low income and have largely exhausted financial
assets. On the other hand, because Medicaid rates are usually below
market rates, the number of participating providers may be limited.
And because someone else is paying, the system is designed to be
difficult to use. Finally, many have no coverage under either Medicaid
or private insurance. Thus, except for a few at both end of the
income spectrum, the likelihood of achieving their expectations
for the miracle of modern medicine is severely constrained..
In long-term care, including assisted living, the issues are uncomfortably
similar-- great expectations and modest means. If anything the conflict
is exacerbated, both because the population is perceived to be vulnerable
and, in the case of nursing homes, a greater percentage of the care
is paid for by Medicaid and Medicare. Furthermore, regulatory requirements
are built around health expectations, since shelter, food, and the
like are only narrowly health matters. (Food must be nutritious
and prepared and served according to safety standards rather than
by well-vetted chefs.) If more were mandated as a basic minimum
in the shelter and board area, these provisions would raise costs
further, and impact state budgets for all settings where care is
subsidized. The question of shelter costs, while recognized, not
been given seriously explored, in part, because of cost implications.
As it is, regulatory requirements related to staff and program may
not be accompanied by funding to accomplish the goals. When faced
with unfunded mandates, we often seek to shift the burden to other
payers-private pay consumers, private insurance, or even taxpayers,
who absorb the cost of tax exemptions given not-for-profit providers.
Policy-makers tend to finesse the issue of whether to pay more or
change expectations by calling for doing more with less.
Doing more with less. Over the past two decades several
strategic approaches have been used to work within limited means.
In acute care, generic drugs and treatment guidelines aim to generate
efficiency. In assisted living, universal workers (that is, care
assistants who are trained on the job for a wide variety of functions)
and nurse delegation (that is, policies by which nurses teach and
delegate non-licensed personnel to do nursing tasks) are two approaches
currently used for doing more for less. Neither can be used in nursing
homes without specific waivers, and in some states nurse practice
acts or agency licensing requirements need to be adapted to permit
their use in assisted living.
Other technologies such as sophisticated management information
systems using hand-held wands for bedside recording, insulin pumps,
incontinence products with moisture alerts, talking medication reminders,
interactive television,"smart" furnishings that enhance
functioning and monitor vital signs, high-tech bathtubs that permit
easy transfer, and fingerprint identification security systems all
are available and may someday be priced in such a way to help continue
to do more for less.
But, there is a limit to what can be done, particularly to counter
certain fixed costs such as those associated with housing (shelter)
and food in long term care. While expectations have continued to
rise - such as the clear preference for private living space, increasing
building code requirements for safety, the availability of choices
in food entrees and extended hours for food service-- how to pay
for these is not as amenable to the types of strategies we discussed
in the previous paragraphs. Public policy makers have largely ignored
the effect of rising expectations that have been market-driven by
consumers themselves, contending they are simply a cost of doing
business. Such arguments are specious, given that the business is
conducted in a setting governed by extensive requirements.
Ducking true costs of shelter and food. In all residential
care settings including nursing homes, the true costs of shelter
and food is poorly articulated, and rarely transparent to the consumer.
Thus it is possible that the amount allocated in accounting to shelter
and board is either more (as may be the case in many nursing homes)
or less (as is the case in some assisted living) than consumers
would pay in the market. Assisted living is expected and has held
itself out as able to provide services in a normal, residential
setting. The nature of the private and public residential environment
and the choices around food and the dining experience are intrinsic
to assisted living. Yet, states that cover assisted living under
Medicaid waivers tend to set food and shelter rates at SSI levels;
if comparable private apartments cannot be located for that shelter
rate in the market area, the policy is surely somewhat cynical or
disingenuous. It has the effect of encouraging providers to double
up Medicaid clients (since the shelter rate for two persons might
come closer to covering actual housing costs). States themselves
are forced to use sleight of hand to transfer shelter into service
costs. This problem of ignoring the cost of shelter has only grown
worse as additional non-market driven care standards have been added.
We do not argue here for a single standard for shelter-just as any
city has a variety of housing of styles and costs, so too should
those who can afford it be entitled to buy what they want. However,
"the fact on the ground" of apartment-style assisted living
settings with a private room and bath standard does force consideration
of the decent minimum that should be held out as a goal, and paid
for at appropriate levels.
The cost of shelter is related to the overall cost of housing in
a given geographic area, special code requirements, building design,
size, amenity level and location.(Wilson, Hernandez & Sheehy,
2001). It is affected by the amount of debt on a building (since
few are without mortgages) and the type of financing used to finance
that debt, as well as tax and utility rates of local municipalities.
While impossible to put a specific price on the actual cost of privacy
and other environmental amenities given all of these variables,
we know that covering property-related costs typically consumes
35% to 45% of the national average private-pay rates in assisted
living ($2202 a month in 1999). Even in assisted living residences
tagged as affordable, this yields a shelter cost more between $500-$700
per month in low-cost-of-living areas, an amount well above what
many private pay clients can afford for any extended period of time.
A resident whose sole income is Social Security and SSI and who
qualifies for Medicaid-waiver coverage, is almost certain to be
unable to afford that amount out of income without additional public
subsidization. The food budget allowance under SSI (which can be
as low as $60 a month in some states and typically is no more than
$120 a month) is also set unrealistically low. When food allowanced
substantially above those figures are criticized in the media as
proof of cost-cutting, the distance between expectations and willingness
to pay is further highlighted. Assisted living settings cannot provide
three meals, choice of entrees, mandatory snacks, and special diets
as required for $2 to $4 dollars per person per day. It is unclear
what would be a reasonable expectation of value received for various
prices, and the expected subsidy to Medicaid from the private-pay
market is not made explicit.
Even without counting hidden subsidies to publicly-supported clientele,
private pay residents and their families also harbor unrealistic
notions of what portion of their monthly or daily rate is consumed
by shelter and food related costs. In most communities, it is impossible
to rent even a private room and bath, let alone with a kitchenette
for $500 a month, even without the building-code requirements of
specially constructed assisted living settings. The market rates
for a studio apartment would be higher. Often a certain amount of
service is incorporated into the base rate for the apartment (e.g.
meals, housekeeping, laundry, care management, wellness services,
and sometimes minimum amount of care) without residents having a
breakdown of the literal price of the housing and meals.
Accepting Limitations and Sharing Responsibility
At the heart of all expectations is a vision of a good life towards
the end of life. Assisted living has been successful in the market
because seniors and their families seek a lifestyle different from
a nursing home in a physical setting that is also different. It
is unclear whether this commitment must be realized at the expense
of health outcomes and quality of care, but it seems certain that
orthodox views about how to provide that care based on the current
nursing home model are ill advised. Certainly residents who are
uncomfortable or in physical pain arguably experience a low quality
of life, as do those who are anxious and depressed but receive no
treatment or attention for those problems. Thus far, however, when
tradeoffs are needed, orthodox views of quality of care take precedence
over quality of life. This is an issue of importance in nursing
homes, where authorities are trying to determine how they can measure
and promote a better quality of life. It is certainly at issue in
The rhetoric about the good life for long-term care consumers sometimes
ignores the actual facts of later life for those who need care,
mainly chronic disease, and frailty. Many consumers are ill or in
pain, they have experienced physical and social losses that all
the euphemistically named nursing homes and assisted living programs
cannot gloss over. It is paradoxical that "the perfect drives
out the good," and aspirations towards perfection can stand
in the way of making life improvements for older long-term care
consumers. Some of the early concepts in assisted living may have
already become lost in our quest to create a perfect life for frail
and vulnerable older persons. Two important concepts were bounded
choice and shared responsibility. It is truly ironic that older
consumers themselves have proven more able to recognize these concepts
as elements as a part of a more normal life than families, advocates,
providers or regulators.
Bounded choice. As initially defined for assisted living
(Wilson, 1993), bounded choice was described as identifying limits
to choice and the costs (financial and otherwise). Put simply, bounded
choice accepted the limits that occur in normal life and sought
to recognize the right of actual consumers (as opposed to providers,
advocates, regulators, and even family) to have the most powerful
or only voice in determining what tradeoffs should or could be made
in order to assure that some, if not all, of their priorities for
long-term care were met. This concept allowed for consumers' preferences
(e.g. pet care) to take precedence over "needs" as defined
by others (e.g. daily bed making) when financial considerations
made it impossible to have both. It allowed for consumers to take
risks (e..g. remain in residence if a needed service such as nighttime
transfer assistance was limited in its availability and neither
the provider, the resident, or any other party could or would be
responsible for extra costs. Bounded choice recognized the tension
between individual and group rights, holding forth the notion that
a woman's home was her castle (ergo, few rules would be desirable
regarding housekeeping standards or use of space). It also held
that outside of one's personal space, respect for the rights of
one's neighbors should prevail (ergo, residents would need to refrain
from wearing bedtime clothing in public spaces, playing music at
a volume guaranteed to be heard down the hall, or claiming a certain
table in the dining room as one's own). Bounded choice implied that
the tradeoff for establishing one thing as a priority might result
in limitations in another area depending on the resources available
(more privacy but fewer bedtime checks; more food choice and personal
space, but fewer planned activities, for example). It also implied
that residents had to accept consequences, including financial ones,
if their demands exceeded established service or care boundaries.
What changed? Simply put, expectations were raised and subsequently
not always met. These expectations were sometimes raised by the
industry itself by lack of clarity in its marketing claims. The
industry did an exceptional job appearing to promise a wonderful
life with unlimited choice and a rather poor job of initially defining
limits or costs for unlimited choice. Professionals turned out to
be less comfortable with the idea of tradeoffs than consumers themselves.
Moreover, families, providers, and regulators did not fully understand
or embrace a "home-care philosophy" in a licensed long-term
care setting. (By a home-care philosophy, we mean one that does
not attempt to oversee every aspect of a resident's life nor be
responsible for all outcomes.) Ultimately, when push came to shove,
many stakeholders were unsure they approved of the consequences
that such consumer empowerment might bring. They were more cognizant
of their perceived responsibility to make sure such vulnerable people
got what tradition said they needed, even if it wasn't necessarily
what consumers themselves valued more. Why, except in a misguided
attempt to make amends for the disability and disease that often
accompanies later life, wouldn't we expect some limitations to the
ability of care providers to solve problems? The answer is complex.
The power to vote with their feet and change where they live is
not a reality for many older people. It is also possible that, in
our effort to protect the vulnerable person, professional and other
stakeholders perceive the tradeoffs consumers themselves are asked
and are willing to make are unfair. The undiscussed paradox, however,
is that the tradeoffs in quality of life (the double room or worse
in nursing homes, the group tubs down the hall, the barracks-style
daily routines, prohibitions of beloved pets) were all accepted
as an inevitable cost of giving people the health care they needed.
Assisted living and the market response it generated challenges
that assumption, but the idea of tradeoffs is hard to face.
Shared responsibility. The other concept, shared responsibility,
has fared slightly better under the rubric of negotiated risk agreements,
already discussed. Negotiated risk does not encompass the entire
concept of shared responsibility, but does address an important
dimension related to the tension inherent in the conflicting values
of autonomy and safety. It should noted, however, that cognitive
impairment sends the most ardent supporters of negotiated risk into
a maelstrom of caveats. Many are troubled by the idea that such
a tool might be used to foster neglect, to excuse poor outcomes
and to avoid liability for harmful acts. Moreover, despite the abstract
acceptance of the gerontological truism that some loss of cognitive
functioning does not mean loss of all capacity to exercise decisional
autonomy all areas of life, we are reluctant to take the risk that
a poor decision will result in criticism, blame or additional liability.
In a real sense the fear what others think of the "quality'
of decision-making even when the decisions do not pose potential
for demonstrated harm acts to motivates us to reduce or remove decisional
autonomy in spite of an expressed desire to preserve and promote
autonomy. It could be said that assisted living has done a great
job of helping us recognize the importance of autonomy to older
adults, regardless of impairment levels; however, it has not been
as successful at helping to generate understanding that life, in
spite of everything we might wish for, is seldom even close to being
The broader ideals embedded in the idea of shared responsibility
have not been so well integrated into the thinking of families,
providers, regulators and other advocates. A key concept is that
life is, in part, about agreeing upon and setting priorities. Shared
responsibility suggests a consensus that life is full of trade-offs
and that lives are far from ideal. While in no way meant to condone
neglect or abuse, the assumption, there is recognition that in normal
life many spend their spare time watching television, few have unlimited
choice about when (or what) they eat, and sometimes we wait in line
to get help or even to go to the bathroom (consider the theater
at intermission). In normal life not everything always happens we
way we plan, nor do we do always get everything we need or want
regardless of the price we pay. In other situations where expectations
and the desire for perfection are high (for example, surgery or
space launches), teamwork is demanded and everyone has a personal
stake in achieving good results. Why should assisted living and
long- term care not be more like ordinary life than like some superordinate
time-limited mission or effort? Teamwork should not proceed along
the lines of the space shuttle or the surgical suite. On the other
hand, a way must be found to integrate a concept of some type of
teamwork among consumers and their families and advocates, providers,
and regulators to determine how to improve quality.
The current tendency in the press and in applications of regulations
is to hold assisted living providers responsible for certain categories
of adverse outcome, as though the more dramatic problems can be
prevented and, if they occur, someone must be blamed. When something
goes awry we feel that "payment" (whether public or private)
allows us to lay all responsibility onto the provider of these services.
If things go seriously awry, the line of first defense is a call
for more requirements and rules that mandate a generic fix for specific
situations. The tired scenario is played out by calling for familiar
remedies such as staff ratios, additional certification of managers,
and additional mandates or prohibitions.
In saying that responsibility needs to be taken by many parties,
including residents and family, we are not negating the need for
some standards. But the difficult issues of how these standards
should be set and how to allocate responsibility requires the active,
constructive, and ongoing involvement of those with a personal interest.
The problems cannot be solved by promulgating more rules for providers
as most familiar with the evolution of nursing home regulations
would agree. The larger responsibility of families, friends and
citizens to contribute more than negative involvement remains. It
is easy to recognize a negative outcome. It is harder to define
and promulgate positive outcomes, and decide what level and circumstances
of negative outcomes are acceptable as part of life's chances.
Strategies for Action
We have made the plea to avoid falling back on the familiar ways
of quality control in nursing homes, or retreating from the ideals
represented by the best assisted living can offer. What strategies,
then, are available to maintain and improve the quality of assisted
living without actually hurting the elements and values that attracted
consumers in the first place? We are aware of the mounting pressure
to act. Some residents appear to have been harmed by their assisted
living care. An extensive process of deliberation, study, and testing
would be needed to truly evolve and test a new approach to quality
oversight in long-term care, and we urge this dialogue start. Short-term
strategies will also be needed, and indeed quality monitoring and
decisions based on presumed quality control are happening all the
time. Going slow with prescriptive remedies for presumed problems
would seem wise during this period of evolution.
The vehicles outside assisted living that shape its nature (which
is another way of saying its quality) include: state and local licensing;
state payment rules; the activities of publicly paid advocates such
as state and local ombudspersons; the activities of care managers
who may be involved in ordering and monitoring care for public and
private payers; federal oversight when federal money is involved
(which, so far, is seldom); and the market itself. Within these
possibilities, choices need to be made about how to direct quality
standards and oversight efforts.
If we were to think of assisted living as home care, an earlier
project identifying the forces for home-care quality may be instructive
(Kane 1994). The following five factors were identified as influencing
the quality of care at home: 1) consumer activism (which, of course,
is fanned by information); 2) provider initiatives, such as continuous
quality improvement and accreditation; 3) regulatory standards and
oversight; 4) training (both basic, which takes a long time to affect
results, and on the job); and 4) systemic and market factors. The
present call is for regulatory efforts, but it is noteworthy that
regulations can be used to improve the other categories. For example,
standards could be established for consumer involvement and education,
for provider quality improvement efforts, and for training. We are
attracted to exploring the implications of considering assisted
living as home care because of the assumption that people maintain
freedom and control in their own homes. Merit may also be found
in considering what kinds of regulations would increase consumer
power and information, and what kinds of regulations would provide
incentives for providers to become proactive in improving their
own quality along the lines intrinsic to the goals of assisted living.
The nomenclature in assisted living needs to be examined for its
underlying implications. What are the advantages or disadvantages
of construing the consumers as "tenants" versus calling
them "residents." Can tenant ever be accurate in terms
of an expectation that residents have tenant's rights? Would tenant
status make it impossible for regulatory bodies to specify criteria
for who may live in the setting, and would this be a good thing?
Is the language of "admission" and "discharge"
desirable, or is the language of "move-in," "move-out,"
and "eviction" preferable? Is it possible that a resident
(or tenant) could be discharged from the services, yet not evicted
from or required to move out of the premises without due process.
Many statements about assisted living shy away from terms that seem
unduly medical. "Service planning" is substituted for
"care-planning," and "facility" with all its
ugly institutional connotations is replaced by "setting"
or "community." Some commentators object to the term "home-like"
as a goal of assisted living: people's own homes or apartments are
not ordinarily described as home-like, but simply as home. In writing
this document, we have struggled with choosing the words that allow
for communication to readers (care-plan is better understood than
"service plan," for example) and yet convey what assisted
living could be. Some collective attention to word choice, especially
around the distinction between tenant and resident, might be a helpful
way of backing into clarifying the entity.
It appears evident that federal regulations would be premature,
and possibly out-of-place given that assisted living falls outside
the federal sphere. Developing a model statute that states would
states be urged to adopt (perhaps required to adopt if they accept
federal money to subsidize any residents) also seems a mis-application
of effort without prior resolution of some of the issues raised
in this paper. Such a model statute is in danger of being so general
that it lacks meaning and drives the field downward, or so prescriptive
that it stifles innovation at a critical time.
The 12 more specific recommendations below are couched as suggestions.
Strive for approaches, guidelines and standards that pay
significantly greater attention to quality of life. This
means explicitly recognizing tradeoffs between quality of life
and quality of care. It means using potential and actual consumers
(of the services ) to help at the front end in designing individual
services and service programs, and in providing information
about accomplishments at the back end. Its means recognizing
that the definition of quality of life may vary among consumers
who actually use services, their families, advocates who speak
for them, regulators of quality, or those who authorize use
of public dollars , and that one should tread lightly when accepting
definitions of quality proposed by others on behalf of actual
users of service. Arguably, the further one gets from the primary
consumer, the more likely it is that more attention will be
given to safety than autonomy, resident preferences, and quality
Consider how regulations and monitoring could affect achieving
the essential features of assisted living and resolving the
major challenges described in this paper. Regulations could
enhance or retard the development of the residential environments,
the service capability, and the philosophy on which assisted
living rests. They also can enhance or inhibit resolution of
the challenges identified; namely, balancing safety with autonomy
and quality of life; preferences and autonomy with safety; meeting
residents' needs for individuality as well as for affiliation;
encouraging individuality within the context of a community;
permitting aging in place for those who wish it; avoiding the
pitfall of too-high expectations; and maintaining affordability
so some of these assisted living programs can be accessible
to people with modest incomes and public subsidies. Related
to aging in place, the approach evolving in Michigan seems worth
Critically examine state assisted living regulations and
enforcement practices for their effects on the preceding goals.
Assisted living is not unregulated; it is just not federally
regulated. Going beyond mere cataloguing, the large number of
state approaches now extant should be critically analyzed for
their likely influences on the direction of assisted living.
Materials prepared for a September 2001 Summit on Regulation
sponsored by the Assisted Living Federation of America (ALFA)
and the National Academy for State Policy made a helpful start
by reviewing and categorizing the range of state regulatory
approaches to certain common issues. These included: the definition
of assisted living itself, admission and retention standards,
rules for management and administration of medications, policies
for dementia care, staff training requirements, disclosure and
admissions agreements, recording and documentation, and negotiated
risk practices (ALFA, 2001). For most topics three or four characteristic
approaches were identified. Such description and classification
offers a starting point for considering how the various state
stances affect the overall development of assisted living.
Consider whether there has been unnecessary spillover of
existing nursing home rules into assisted living, and at least
for a time evolve assisted-living oversight as independently
as possible from nursing-home oversight. Assuming that assisted
living is meant to be different from nursing homes, it is necessary
to create the conditions for that difference. (In time, we would
prefer to see a level playing field created by offering nursing
home residents freedoms similar to assisted living residents,
rather than by restricting the latter). An example of spillover
from nursing homes is found in abuse reporting requirement that
some states have applied to assisted living, which define almost
every negative result as neglect or abuse and level fines against
those who report it. If there is to be a difference between
nursing homes and assisted living in this developmental stage,
it will be important that the licensing and survey personnel,
and long-term care ombudsmen understand the thrust of what assisted
living is meant to demonstrate. The habits developed in surveying
nursing homes are hard to switch on and off, so that dedicated
assisted living surveyors, trained for those positions, are
optimal. If it is impractical to have separate inspection units
for nursing homes and assisted living in sparsely populated
areas, then perhaps some other entity could be assigned the
assisted living portfolio.
Develop actions that states can take to enhance consumer
information and understanding of assisted living. This includes
information about physical environments, services and care,
aging-in-place policies, and prices so that they can more readily
shop among assisted living programs. Efforts such as uniform
disclosure and plain-English contracts are steps in the right
direction and could be mandated through regulations.
Determine how negotiated risk contracting and individualized
care planning can be encouraged by and compatible with regulation.
This includes reaching some consensus on the kinds of processes
and results that are unacceptable and those that can be tolerated.
It also entails a targeted research agenda that examines what
we really know about how outcomes are associated with various
behavior that professionals view as risky. Also necessary is
some way of reconciling negotiated risk contracts with establishment
of rates for various outcomes highly affected by those contracts.
For example, merely dropping individuals with negotiated risk
contracts from the denominators when calculating relevant outcomes
seems unwise, yet counting those outcomes against the assisted
living program is also unfair. Perhaps, those with negotiated
risk contract need to be tracked separately, though the numbers
might be too small for viable rates. Perhaps the presence of
a negotiated risk contract should be a modifying variable. The
main point is that a mechanism needs to be developed to examine
outcomes taking individualized care planning and negotiated
risk into account.
Keep the focus on the values inherent in assisted living
with training and dissemination of "best practices"
all geared to the developing competence in the promotion of
those values. Make financial resources available to support
the specialized training of professionals and para-professionals
at every level to enhance their understanding of the physical,
social, emotional and mental health of older adults needing
assisted living and long term care. Resist efforts to artificially
segment the work inherent in providing long term care redesign
training programs at all levels of professionalism to encourage
better communication and observational skills, as well as problem
identification and solving techniques. Explore how to improve
competency-based training, particularly for those involved in
direct care, and to ensure that any state-mandated or state-conducted
training is congruent with the service capacity that is essential.
Given the cost of offsite training, it would be helpful to explore
the use of interactive technology for some types of training,
especially for mandated training for direct care staff. (Certainly
if states mandate training, they should guarantee its availability
at a frequency that allows providers to comply.)
Find ways to address subsidies for shelter costs. Convene
a group of finance and policy experts to examine the structure
of SSI and other current programs to determine how the amount
available for shelter might be raised for individuals. Explore
new approaches involving tax and utility abatements, specifically
for assisted living communities serving low and moderate income
older adults. Review the tax credit program and explore how
to make it more readily adaptable to assisted living. Continue,
with renewed vigor, efforts to update thinking about fire codes
and evacuation policies. Look at how broader use of universal
design in construction, which could affect both the cost and
the long-term usability of a building.
Incorporate into any standard setting activity an analysis
of impact on costs, resident autonomy, civil rights, and livability.
This impact analysis should include not only financial cost
to consumers and others, but the impact on quality of life,
autonomy and civil rights of the consumer. Such analysis should
also include the impact of any standard on the affordability
and the livability of assisted living.
Determine how to support active family involvement in care
in assisted living. Family involvement, whether in the actual
provision of physical care such as feeding assistance or bathing,
social support through on-going communication and recreational
opportunities or emotional support to workers should not be
considered as filling in or making up for inadequacies on the
part of the provider, but vital to the team effort. Such consideration
should address the possibility of financial payment or training
of families and cost reduction to the consumer. Such an approach
would involve much more thoughtful discussion about coordination,
shared authority and responsibility, particularly when things
don't get done, go wrong, or the quality is perceived as poor.
Family roles are integral to home care and, while assisted living
should relieve some family responsibility, the home-care model
evolving envisages a more vital role for family members than
their roles in nursing-home care.
Refine ways to measure the outcome of assisted living and
conduct research targeted at improving assisted living capabilities.
The measurement development includes ways to measure outcomes
using the residents' voices. Measures of satisfaction are particularly
important but by no means easy to develop because of the well-known
positivity bias in measuring satisfaction in all care settings.
The targeted research should generate information about the
strengths and limitations of the newer approaches intrinsic
to assisted living: universal workers, delegation of nurse services,
managed risk contracting, mainstreaming versus stratifying residents
with cognitive impairment, aging in place, family roles, and
Encourage community dialogue and consensus building.
All the suggestions made here require community dialogue at
state and local levels, and addressing long-term care goals
with a level of candor not typically undertaken. They need the
thinking of professionals, organizational providers, advocates,
and regulators, and also just ordinary citizens concerned about
how they and their elderly relatives needing care will live
out their lives. They would best be approached without too much
certainty about what is right to do and some humility about
how difficult the task is. The present crisis may be an opportunity
to launch a truly fresh effort to think about the topic.
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1Assisted living is by no means limited to older people, though
its appeal to seniors accounts for the lion's share of the growth
described above, and its role in care of older people is emphasized
in this Discussion Paper.
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