Assisted Living: Examples of State Efforts to Improve Consumer
Protections (30-APR-04, GAO-04-684).
Assisted living facilities provide help with activities of daily
living in a residential setting for individuals who cannot live
independently but do not require 24-hour skilled nursing care. In
2002, over 36,000 assisted living facilities served approximately
900,000 residents. The states establish and enforce licensing
standards for these institutions. Because states have taken
widely differing approaches to regulating and supporting assisted
living, they can potentially learn from each other's experiences
as they consider changes to their own policies. GAO was asked to
review challenges faced by consumers and providers of assisted
living and seek out notable state initiatives addressing those
challenges in three selected areas: (1) disclosure of full and
accurate information to consumers, (2) state assistance to
providers to meet licensing requirements, and (3) procedures for
addressing residents' complaints. We identified specific examples
of individual programs in Florida, Texas, Washington, Georgia,
and Massachusetts that highlighted different approaches in these
three areas, which other states might wish to consider emulating.
-------------------------Indexing Terms-------------------------
REPORTNUM: GAO-04-684
ACCNO: A09940
TITLE: Assisted Living: Examples of State Efforts to Improve
Consumer Protections
DATE: 04/30/2004
SUBJECT: Elder care
Elderly persons
Health care facilities
Health care services
Licenses
Long-term care
Nursing homes
Information disclosure
Consumer education
Standards and standardization
Florida
Massachusetts
Texas
Washington
Georgia
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GAO-04-684
United States General Accounting Office
GAO
Report to Congressional Requesters
April 2004
ASSISTED LIVING
Examples of State Efforts to Improve Consumer Protections
GAO-04-684
Highlights of GAO-04-684, a report to congressional requesters
Assisted living facilities provide help with activities of daily living in
a residential setting for individuals who cannot live independently but do
not require 24-hour skilled nursing care. In 2002, over 36,000 assisted
living facilities served approximately 900,000 residents. The states
establish and enforce licensing standards for these institutions. Because
states have taken widely differing approaches to regulating and supporting
assisted living, they can potentially learn from each other's experiences
as they consider changes to their own policies.
GAO was asked to review challenges faced by consumers and providers of
assisted living and seek out notable state initiatives addressing those
challenges in three selected areas: (1) disclosure of full and accurate
information to consumers, (2) state assistance to providers to meet
licensing requirements, and (3) procedures for addressing residents'
complaints. We identified specific examples of individual programs in
Florida, Texas, Washington, Georgia, and Massachusetts that highlighted
different approaches in these three areas, which other states might wish
to consider emulating.
April 2004
ASSISTED LIVING
Examples of State Efforts to Improve Consumer Protections
Consumers faced with choosing an assisted living facility often do not
have key information they need in order to identify the one most likely to
meet their individual needs. Such information includes staffing levels and
qualifications, costs and potential cost increases, and the circumstances
that could lead to involuntary discharge from the facility. Initiatives in
Florida and Texas have made critical data for consumer selection among
facilities more readily available. Florida has created a Web site that
enables consumers to learn about all of the facilities in their vicinity
and identifies those providing the services the consumers are seeking at a
specified price range. Texas has mandated a standardized disclosure
statement for assisted living facilities, giving consumers concise and
consistent data that facilitates comparisons across providers regarding
services, charges, and policies.
Assisted living facilities are more likely to meet and maintain licensing
standards if they can obtain help in interpreting those standards and in
determining what concrete changes they need to make to satisfy them.
Washington State established a staff of quality consultants to provide
such training and advice to assisted living providers on a voluntary
basis. Evaluations of the program 6 months after its start and 2 years
later documented improvements in provider compliance as well as resident
health and safety. However, a statewide budget crisis led to a decision to
stop funding the program, in order to maintain traditional licensing
enforcement functions.
Assisted living residents sometimes need help to pursue any complaints
that they may have with their providers, especially when faced with an
involuntary discharge. Long-term care ombudsmen are available in all
states, but nursing home residents claim most of their attention. Georgia
has legislated an extensive array of procedural remedies specifically for
assisted living residents that provide them multiple means for seeking
redress of their complaints. The existence of these remedies also
strengthens the position of residents in the informal negotiations through
which most such disputes are resolved in practice. Massachusetts has
created a small staff of ombudsmen dedicated exclusively to serving
assisted living residents. This allows them to specialize in addressing
the particular problems that arise in assisted living facilities.
www.gao.gov/cgi-bin/getrpt?GAO-04-684.
To view the full product, including the scope and methodology, click on
the link above. For more information, contact Leslie G. Aronovitz at (312)
220-7600.
Contents
Letter
Results in Brief
Background
State Efforts to Enhance Consumer Information on Facility
Options
State Efforts to Facilitate Provider Compliance with Licensing
Requirements
State Efforts to Strengthen Residents' Complaint Procedures
Concluding Observations
Comments from the States
1
2 3
7
14 20 27 28
Appendix I Key Sources Consulted
Appendix II Florida Affordable Assisted Living "Find-a-Facility" Consumer
Search
Appendix III Texas Assisted Living Disclosure Statement
Appendix IV GAO Contact and Staff Acknowledgments 39
GAO Contact 39
Acknowledgments 39
Abbreviations
ADL activities of daily living
DOEA Florida Department of Elder Affairs
DSHS Washington Department of Social and Health Services
EOEA Massachusetts Executive Office of Elder Affairs
ORS Georgia Office of Regulatory Services
OSAH Georgia Office of State Administrative Hearings
QIC Washington Quality Improvement Consultation Program
This is a work of the U.S. government and is not subject to copyright
protection in the United States. It may be reproduced and distributed in
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separately.
United States General Accounting Office Washington, DC 20548
April 30, 2004
The Honorable Larry E. Craig
Chairman
The Honorable John B. Breaux
Ranking Minority Member
Special Committee on Aging
United States Senate
The Honorable Ron Wyden
United States Senate
A growing number of elderly Americans who can no longer live
independently have turned to assisted living as an alternative to nursing
homes. Assisted living facilities provide help with activities of daily
living
(ADL) in a residential setting for individuals who do not require 24-hour
skilled nursing care. In 2002, over 36,000 assisted living facilities
served
approximately 900,000 residents. In contrast to nursing homes, with their
extensive federal rules and mandates, the federal government exercises
minimal oversight of assisted living facilities. The states establish and
enforce licensing standards for these institutions.
For a number of years, the Senate Special Committee on Aging has
monitored developments in the assisted living industry. In 2001, the
committee asked a broad-based group of stakeholders to form a
committee, known as the Assisted Living Workgroup, to develop
recommendations that could help states and other entities ensure the
quality of assisted living services across the country. The Workgroup
issued its report in April 2003. It contained 110 specific recommendations
covering a wide range of topics, each supported by two thirds or more of
the 48 participating organizations. These recommendations included
proposals to enhance the information provided to potential residents as
they choose among assisted living facilities, to have states consider
offering providers technical assistance to address state licensing
standards, and to expand federal and state support for assisted living
residents who have complaints about their facilities.
Subsequently, you asked us to review state efforts in these three selected
areas: (1) disclosure of full and accurate information to consumers, (2)
state assistance to providers to meet licensing requirements, and (3)
procedures for addressing residents' complaints.1 As you requested, we
agreed to examine the challenges faced by consumers as well as providers
in these three areas and then seek out notable state initiatives intended
to address these issues, outlining for each selected program or policy its
main features, intended benefits, and perceived effectiveness.
In addressing these objectives, we interviewed experts from academia and
selected assisted living organizations representing for-profit and
nonprofit providers, consumer advocates, and state regulators. (See app.
I.) Working largely with the information obtained from these interviews,
combined with available research and evaluations on assisted living and
guides to applicable state regulations, we chose five specific initiatives
from Florida, Texas, Washington, Georgia, and Massachusetts to highlight.
We based this selection on evidence that the chosen program or policy in
that state differed in defined ways from approaches typically taken by
other states. We did not undertake a formal evaluation of these programs
or policies, nor did we systematically compare them with alternative
approaches adopted in other states. For each of the selected initiatives,
we conducted additional interviews with responsible state officials as
well as representatives of providers and consumers in that state. We also
drew on any relevant studies, tracking data, or related public documents.
We reviewed relevant laws and regulations in the five states with
initiatives selected for study. References to assisted living laws and
regulations in all other states are based on secondary sources. We
performed this work from November 2003 through April 2004 in accordance
with generally accepted government auditing standards.
Consumers faced with choosing an assisted living facility often do not
have key information they need in order to identify the one most likely to
meet their individual needs. Such information includes staffing levels and
qualifications, costs and potential cost increases, and the circumstances
that could lead to involuntary discharge from the facility. Initiatives in
Florida and Texas have made critical data for selection among facilities
more readily available to prospective assisted living residents. Florida
has
1In this report, we use the term "complaint procedure" to encompass state
policies that refer to either complaints or grievances.
Results in Brief
created a Web site that enables consumers to learn about all of the
facilities in their vicinity and identifies those providing the services
the consumers are seeking in a specified price range. Texas has mandated a
standardized disclosure statement for assisted living facilities, giving
consumers concise and consistent data that facilitate comparisons across
providers regarding services, charges, and policies.
Assisted living facilities are more likely to meet and maintain licensing
standards if they can obtain help in interpreting those standards and in
determining what concrete changes they need to make to satisfy them.
Washington State established a staff of quality consultants to provide
such training and advice to assisted living providers on a voluntary
basis. Evaluations of the program 6 months after its start and 2 years
later documented improvements in provider compliance as well as resident
health and safety. However, a statewide budget crisis led to a decision to
stop funding the program, in order to maintain traditional licensing
enforcement functions.
Assisted living residents sometimes need help pursuing any complaints that
they may have with their providers, especially when faced with an
involuntary discharge. Long-term care ombudsmen are available in all
states, but nursing home residents claim most of their attention. Georgia
has legislated an extensive array of procedural remedies specifically for
assisted living residents that provide them multiple means for seeking
redress of their complaints. The existence of these remedies also
strengthens the position of residents in the informal negotiations through
which most such disputes are resolved in practice. Massachusetts has
created a small staff of ombudsmen dedicated exclusively to serving
assisted living residents. This allows them to enhance their expertise in
addressing the particular problems that arise in assisted living
facilities.
Over the last decade, assisted living has emerged as an increasingly
popular long-term care option. Within the continuum of long-term care,
assisted living facilities typically provide a level of care between
independent living and nursing homes for persons who need assistance with
one or more ADLs, such as bathing or dressing.2 However, states vary
Background
2Independent living facilities generally provide elderly people a
residential setting that offers meals, housekeeping, laundry,
transportation, and social and recreational activities, according to the
American Seniors Housing Association. These facilities do not provide
personal care or health services.
in the term they use for assisted living-it appears in the licensing
regulations of most states but some refer instead to personal care homes,
boarding homes, residential care facilities, adult homes, and homes for
the aged3-and in the characteristics of the facilities encompassed by the
term used. A 2002 study of assisted living policies in each of the 50
states and the District of Columbia showed that states differ in the
facilities included under their assisted living regulations based on
facility size, services provided, and whether or not the facilities offer
specified types of accommodations such as private apartments.4 In
addition, the study found that many states incorporate a distinctive
philosophy of care in their regulation of assisted living facilities to
emphasize residents' choice, independence, dignity, and privacy.
Specifically, 28 states have included an assisted living philosophy
statement in their regulations, but specifics of the statements vary.
Unlike nursing homes, which are subject to extensive federal regulations,
assisted living facilities generally have considerable flexibility to
determine the resident populations that they serve and the services they
provide. As a result, assisted living facilities vary widely on both of
these dimensions. Nevertheless, most facilities provide housing, meals,
housekeeping, laundry, supervision, and assistance with some ADLs and
other needs, such as medication administration. The majority of assisted
living residents are between the ages of 75 and 85 and more than two
thirds are females. About a quarter of assisted living residents need help
with three or more ADLs.5 Eighty-six percent of residents require or
accept help with medication.6 Facilities differ in the extent to which
they admit residents with certain needs (including residents who meet the
criteria for admission to nursing homes) and whether they retain residents
as their
3American Seniors Housing Association, Seniors Housing: State Regulatory
Handbook, (Washington, D.C.: March 2003). Thirty-three states and the
District of Columbia refer to assisted living in their licensing
regulations.
4Robert Mollica, State Assisted Living Policy: 2002 (Portland, Me.:
National Academy for State Health Policy, November 2002).
5In contrast, among nursing home residents, about 83 percent require
assistance with three or more ADLs. Catherine Hawes et al., A National
Study of Assisted Living for the Frail Elderly: Results of a National
Survey of Facilities (Beachwood, Ohio: December 1999), Prepared for the
Assistant Secretary for Planning and Evaluation, Department of Health and
Human Services.
6Residents need differing levels of assistance with medication, such as
supervision of selfmedication or medicine storage and dispensing. National
Center for Assisted Living, Assisted Living: Independence, Choice, and
Dignity (March 2001).
needs change. For example, a 2000 study found that less than half of the
assisted living facilities are willing to admit or retain persons who
require assistance to transfer from bed to chair or wheelchair.7 This
study also found that less than half of the facilities would admit or
retain residents with moderate to severe cognitive problems.8
The type, size, and cost of assisted living facilities also vary widely.
Some facilities are freestanding while others are located on a campus that
contains multiple units offering different levels of care (such as nursing
homes and independent living residences). Those built in the 1980s
generally provide semiprivate accommodation while the newer facilities
typically offer private apartments. Facilities range in size from a few
beds to over a thousand. The average facility in a nationwide study had 53
beds.9 Many facilities are independently owned while others belong to
regional or national chain corporations. Assisted living fees vary widely
across and within states depending on the facility's size, service, and
location. For example, the average monthly base rate ranged from $1,020 in
Mississippi to $4,429 in Washington, D.C., according to a recent industry
survey.10 Residents often pay additional fees for special care units and
other services, such as medication administration and transportation. Two
thirds of assisted living residents pay out-of-pocket, but many states use
7Catherine Hawes et al., A National Study of Assisted Living for the Frail
Elderly: Final Summary Report (Beachwood, Ohio: November 2000), Prepared
for the Assistant Secretary for Planning and Evaluation, Department of
Health and Human Services.
8The Alzheimer's Association concluded from the most recent available
research that at least half of elderly assisted living residents have some
degree of cognitive impairment, though most of them do not live in
specialized dementia care units. The Association based its estimate of the
prevalence of cognitive impairment on state and national studies conducted
between 1997 and 2002. See Alzheimer's Association, People with
Alzheimer's Disease and Dementia in Assisted Living (Advocacy and Public
Policy Division) Aug. 13, 2003; Alzheimer's Association, Special Care
Units in Assisted Living, (Public Policy Division) August 2003.
9Catherine Hawes et al., A National Study of Assisted Living for the Frail
Elderly: Results of A National Survey of Facilities, (Beachwood, Ohio:
December 1999).
10The MetLife Market Survey of Assisted Living Costs, MetLife October
2003. LifeCare Inc. conducted this survey for MetLife. It was not based on
a representative national sample, though it included 87 major markets in
all 50 states and the District of Columbia. According to this survey, the
national average monthly base rate for an assisted living facility
resident in the United States is $2,379 ($28,548 per year).
Medicaid and other federal and state funds to help finance such care.11 As
of October 2002, 41 states used Medicaid reimbursement to cover assisted
living or related services for more than 102,000 people.12
The federal government exercises minimal oversight over assisted living,
leaving to the states primary responsibility for ensuring that assisted
living residents have adequate protections.13 Some states fulfill this
responsibility by establishing licensing standards, inspection procedures,
and enforcement measures. Nevertheless, the regulatory approaches to
assisted living adopted by states vary widely in scope and structure. For
example, some states delineate the services that assisted living
facilities may or may not provide-sometimes with multiple tiers of
licenses for more specialized care-while others grant broad flexibility to
providers to meet the individual needs of residents and their families.14
All states have long-term care ombudsmen with potential jurisdiction over
assisted living facilities. Among other things, ombudsmen may provide
services to protect assisted living residents and resolve complaints that
they file. Ombudsmen may monitor quality of care, educate residents about
their rights, and mediate disputes between residents and providers.
11Assisted Living: Independence, Choice, and Dignity, National Center for
Assisted Living (March 2001). To help pay for assisted living services
such as personal care and homemaker services, states typically use
Medicaid waivers, specifically the Home and Community Based Services
Waiver. These waiver payments do not cover room and board. States have
considerable flexibility in determining the type of services and
recipients covered under these waivers with limited reporting requirements
to the federal government. For details on reporting requirements, see U.S.
General Accounting Office,
Long-Term Care: Federal Oversight of Growing Medicaid Home and
Community-Based Waivers Should be Strengthened, GAO-03-576 (Washington,
D.C.: June 20, 2003).
12Robert Mollica, State Assisted Living Policy: 2002 (Portland, Maine:
National Academy for State Health Policy, November 2002).
13Although a number of federal agencies have jurisdiction over certain
aspects of consumer protection and quality of care in assisted living, few
federal standards or guidelines specifically govern assisted living. In
general, the role of federal agencies in this area is to administer laws
that relate to the funding of certain programs, such as Medicaid
reimbursement for the direct care services component of assisted living
and funding the state-run long-term care ombudsmen program. The federal
government grants broad discretion to the states in carrying out their
oversight responsibilities. For further details see U.S. General
Accounting Office, Long-Term Care: Consumer Protection and Qualityof-Care
Issues in Assisted Living, GAO/HEHS-97-93 (Washington, D.C.: May 15,
1997).
14Robert Mollica, et al, State Assisted Living Practices and Options: A
Guide for State Policy Makers, (Washington, D.C.: Development Corporation:
September 2001).
Prior GAO reports have addressed a number of consumer protection and
quality of care issues that remain at the forefront of public concerns
about assisted living.15 These reports raised questions about the adequacy
of information available to prospective consumers to help them choose a
facility that meets their needs. The 1999 report also discussed states'
varying approaches to oversight and the type and frequency of consumer
protection and quality of care problems that state agencies identified.
State Efforts to Given the wide diversity among assisted living facilities
in the services
they offer and the populations they are prepared to serve,
prospectiveEnhance Consumer assisted living residents can have difficulty
finding an appropriate-let Information on alone the most
appropriate-facility to meet their individual needs.
Initiatives such as the Florida "Find-a-Facility" Web site and the Texas
Facility Options standardized disclosure statement help consumers make
better choices by providing them the information they need in an
easier-to-absorb format.
Consumers Often Lack Key Information to Make Appropriate Choices
Available studies and interviews with our experts indicate that consumers
choosing among their assisted living options often lack the information
they need to make a fully informed selection. The limitations in the
information currently provided to consumers relate to both its substantive
content and mode of presentation. To make appropriate choices among the
wide range of facility options available in the market, consumers need to
learn about facility services, costs, and policies that impact residents.
Moreover, they need this information to be not only complete and accurate,
but also presented in a timely way and in a form that they can understand.
When consumers do not receive adequate information before selecting an
assisted living facility, they are less likely to find a facility that can
satisfactorily address their personal care needs.
In making selection decisions, consumers rely on facility information that
they receive in various ways, including marketing brochures, facility
tours, and interviews with providers. Consumers also rely on the advice of
family, friends, or health care professionals. Our 1999 report stated that
marketing materials, contracts, and other written materials that
facilities give consumers were often vague, incomplete, or misleading.
Specifically,
15U.S. General Accounting Office, Assisted Living: Quality-of-Care and
Consumer Protection Issues in Four States, GAO/HEHS-99-27 (Washington,
D.C.: Apr. 26, 1999) and GAO/HEHS-97-93.
the report found that facilities' written materials often did not contain
key information, such as a description of services not covered or
available at the facility, the staff's qualifications and training,
circumstances under which costs might change, assistance residents would
receive with medication administration, facility practices in assessing
needs, or criteria for discharging residents if their health changes.
Subsequent studies, including the 2003 Workgroup report, as well as
experts that we interviewed, indicate that consumers continue to have
difficulty obtaining full disclosure of the information they need.16 In
response to this deficiency, 18 states have instituted information
disclosure policies, such as requirements on the use of uniform disclosure
statements or the contents of written materials provided to prospective
residents.17
Our expert interviews and the studies we reviewed identified information
about staffing levels and qualifications, costs and potential cost
increases, and facility policies regarding discharge criteria as critical
to informed decision making. Consumers need to know, for example, whether
a facility has staff to provide full 24-hour service to address recurring
care needs, such as assistance administering medications, as distinct from
a facility whose overnight staff is only available to deal with emergency
situations. While some facilities reportedly disclose only aggregate
staffing data, the most important information for consumers concerns the
number of staff directly involved in providing care to residents. Expert
interviews and reviewed studies also indicated that consumers do not
always receive information clearly explaining the circumstances under
which resident costs can increase. Similarly, according to a consumer
advocate organization, providers do not always inform consumers about the
circumstances under which they could be involuntarily discharged from
their facility, even when state regulations dictate that residents must
leave if their needs reach a certain level.
The experts we interviewed underscored the importance of conveying
critical information about assisted living choices in a way that consumers
can readily absorb. The experts explained that prospective residents and
16White Paper on Assisted Living, National Academy of Elder Law Attorneys,
Inc. (Tucson, Az.: 2001). Deanna Okrent and Virginia Dize, Ombudsman
Advocacy Challenges in Assisted Living: Outreach and Discharge
(Washington, D.C., National Association of State Units on Aging: March
2001).
17See State Assisted Living Policy: 2002 (Portland, Maine: National
Academy for State Health Policy, November 2002), section 1.5.
family members often have difficulty grasping the information presented to
them, especially when they have to make decisions quickly to address a
crisis situation. Under these circumstances, consumers often do not know
what questions to ask or how to assess and compare the responses that they
receive in order to identify the facility that can best meet their
individual needs.
When consumers do not get complete and accurate information on the
assisted living alternatives available to them, in a form that they can
understand, they run the risk of choosing a facility that cannot
adequately meet their personal care requirements. A likely consequence is
that they will have to move again within a short time. Both consumers and
providers benefit if they can minimize this risk by ensuring that the
consumer has, and can use, the critical information relevant to making an
informed choice among different facilities.
Florida Sponsors an Internet-based Facility Locator
In the summer of 2003, Florida's Department of Elder Affairs (DOEA)
launched its Affordable Assisted Living Web site to enhance public access
to information on assisted living.18 One of its features is called
"Find-a-Facility," a search tool that allows anyone with internet access
to identify those Florida assisted living facilities that match the
preferences set by the user. The available options include geographic
location, price range, housing configurations (such as private
apartments), whether the facility accepts residents with government
subsidies or certain disabilities, and clinical and social services
offered. (For examples of the Web site pages, see app. II.) Once the user
selects his preferences among the available options, the site generates a
list of licensed facilities, with those most closely matching the chosen
preferences ranked highest. For each of these facilities, the user can
print out a one-page description that includes the facility's contact
information, number of beds, specific government subsidy programs it
participates in, any specialized care licenses, and all of its entries on
the list of selection options.
Development of the Web site occurred through a collaboration of public and
private entities. It began under Florida's Coming Home Program, sponsored
by the Robert Wood Johnson Foundation. DOEA established a committee
comprised of representatives of providers, consumers, and regulators. They
found a need for a comprehensive information
18Found at www.floridaaffordableassistedliving.org.
clearinghouse to inform both providers and consumers about assisted living
options and the multiple long-term care and housing assistance programs
designed to make these options more widely available. The
"Find-a-Facility" feature developed from discussions with social workers
and case managers who had helped elderly clients find appropriate assisted
living residences. They underlined the need to identify the facilities
that met their clients' needs and preferences and that the clients could
afford, often with the assistance of government subsidies. Many had been
relying on placement agencies, which would only list facilities that had
paid the agency a fee. Larger, more expensive, private pay facilities were
more likely to sign on with the placement agencies, meaning that
prospective residents were less likely to find out about smaller, less
expensive, or subsidized facilities in their area.
Several state agencies then joined together in the technical development
of the Web site. Specifically, DOEA, the Florida Agency for Health Care
Administration, and the Florida Housing Financing Corporation contributed
staff time and services, in addition to state funding of about $29,000.
The state tested the prototype site for several months with different
consumer groups, such as Alzheimer caregivers and visitors to neighborhood
senior centers. Based on the feedback received, state officials made
further refinements in the wording of entries, their organization, and the
instructions provided to users. DOEA subsequently developed a
Spanish-language version of the site, which came into operation in April
2004.
To promote the Web site, the state informed providers and potential
residents of assisted living facilities about the site and how to use it.
DOEA took care to contact professionals who typically help place residents
in assisted living, distributing brochures to social workers and hospital
discharge planners as well as local area agencies on aging. Consumer
advocacy groups such as AARP and the Alzheimer's Association were also
encouraged to help get the word out about the Web site. Usage rates have
increased steadily, reaching about 250 visitors a day by February 2004.
DOEA also provided training to assisted living providers, to help them
enter much of the data presented on the Web site. All licensed facilities
are included in the basic database, with information on facility location,
number of beds, state licenses held, and contact information downloaded
from Agency for Health Care Administration files. However, providers
voluntarily enter virtually all of the descriptive information on price
range, housing configurations, populations served, and services offered.19
A provider representative indicated that entering the Web site data
initially takes 10 to 15 minutes. Providers can update their information
at any time. By February 2004, approximately 40 percent of assisted living
facilities had filled in their data fields. DOEA receives about two
inquiries a week from providers asking for assistance, but in general the
providers find this process relatively easy. Initial skepticism among some
providers has diminished as they hear from providers already in the system
and they recognize the inherent advantage of free advertising. This is
especially beneficial for smaller, independent facilities that cannot
match the commercial advertising of the national and regional chains.
A state administrator noted that maintenance of the Web site requires some
continuing effort. With substantial turnover among facility providers and
professionals assisting prospective residents, outreach and training is an
ongoing process. DOEA also tries to spot-check at least some key data
elements entered into the system, even though the Web site itself
prominently displays a disclaimer that provider-entered data have not been
verified for accuracy.
No formal evaluations of the Web site have yet been undertaken, but
informal feedback has been uniformly positive according to both provider
and consumer representatives, as well as the state official responsible
for its operation. Consumers, and those acting on their behalf, are
finding that the Web site has several distinct advantages over previously
available information sources. Most importantly, it provides a way to
efficiently narrow their search. They can quickly identify the universe of
facilities within a given area and determine which offer the services they
are looking for at a price they can afford. Current information about
participation in government subsidy programs is especially valuable for
many prospective residents of limited means. In addition, because
"Find-a-Facility" is on the internet, out-of-state family members can
actively participate in the process of locating an appropriate facility.
Similarly, the Web site makes it much easier for professionals assisting
elderly clients, such as social workers and hospital discharge planners,
to determine the full list of available placement options.
19DOEA is working to facilitate provider access to the internet. It has
helped that a substantial number of assisted living facilities already had
acquired internet access in response to earlier state incentives for
submitting Medicaid bills electronically.
Texas Requires Facilities to Distribute Standardized Disclosure Statements
In 1999, Texas enacted a law requiring assisted living facilities to
provide each prospective resident a consumer disclosure statement that
follows a standard format approved by the Department of Human Services.20
Its purpose is to enable consumers to better compare facilities by
describing their policies and services in terms of uniform categories.
However, its effectiveness depends not only on its content but also on how
and when facilities distribute it to consumers.
This five-page checklist form addresses many of the topics identified in
our expert interviews as critical for consumers choosing among alternative
assisted living facilities. It describes the services and amenities
provided to all residents, as well as those offered at additional cost.
(See app. III.) The form also lists circumstances that could lead a
resident to be discharged from the facility and the training received by
staff. It includes a chart showing the number and type of staff on duty
for each daily shift, which is also posted in public view at the facility.
While a number of other states have developed similar forms-particularly
for specialized dementia units-Texas is notable for having been among the
first to develop a standardized disclosure statement for all assisted
living facilities, and to include detailed information on staffing levels.
The standardized response categories specified by the form make the
furnished information consistent across facilities, allowing consumers to
make comparisons more readily among them. The checklist format means that
consumers see what services the facility does not provide as well as those
it does. There is one version of the form for assisted living facilities
in general and another, covering many of the same topics, adapted
specifically for units specializing in dementia care. Neither form,
though, has been translated into any languages other than English.
State officials described the process of developing these forms as
proactive on their part-rather than in response to external complaints-
and relatively uncontroversial. The disclosure statement for specialized
dementia units emerged from a state-organized advisory committee including
provider and consumer advocates. That served as the model for the more
generic assisted living form issued by the department shortly thereafter.
Since then, according to both state officials and an official of a state
provider association, providers have accepted both forms without
complaint. State officials believe that this extensive involvement of
201999 Tex. Gen. Laws ch. 233 S:1 (Tex. Health & Safety S: 247.026
(2003)).
providers, along with consumer representatives, in the development of the
form, contributed greatly to its wide acceptance among providers as a
whole.
Providers vary considerably in the way they distribute the form. Some send
it out to people making phone inquiries, some provide it when prospective
residents or their family members visit the facility, and some wait to
distribute it when the contract is signed. Although the form states that
copies should be provided to anyone who requests information about the
facility, providers are only held accountable for ensuring that those who
ultimately become residents in their facility received the completed form
by the time they were admitted. According to the consumer representative
we interviewed, residents who obtain the disclosure statement during the
admissions process often pay little attention to it given all the other
papers they receive and sign at that time.
Once instituted, the Texas disclosure form has imposed few burdens on
either assisted living providers or state officials. According to the
provider association official we interviewed, it takes no more than 20 to
30 minutes to complete. The biggest challenge is remembering to revise
affected entries on the form when a facility changes its services or
staffing patterns. Such revisions happen perhaps four or five times a
year, on average. To meet regulatory requirements, providers need to
document that residents have seen the form prior to their admission.21 As
part of their annual inspection of licensed assisted living facilities,
state inspectors can assess whether a facility has a form ready to
distribute and that current residents received the disclosure form before
signing their residence agreement. However, the inspection process does
not include an explicit examination of the accuracy of the information
provided on the form.
Available evidence suggests that the assisted living disclosure statement
provides useful information to prospective residents, though it does have
certain limitations. None of the state, provider, or consumer
representatives we spoke with knew of any formal studies conducted on the
effectiveness of the form in enhancing consumer decision making on
assisted living facilities. However, the anecdotal evidence they conveyed
was largely positive. The consumer and provider representatives we spoke
with generally thought that the form was clear and covered the major
topics that consumers need to know about. Nonetheless, the consumer
2140 Tex. Admin. Code S: 92.41(d).
representative indicated that some residents and their families still
encountered "surprises" after the resident was admitted. These typically
involved the conditions under which residents could be discharged or
aggregate charges assessed. According to this representative, such
misunderstandings reflected, in part, the intrinsically subjective nature
of certain decisions, such as whether a facility could continue to meet
the needs of a resident whose level of disability may have increased over
time. The provider official we interviewed suggested that the form itself
could be revised to more clearly convey how increases in services used
would affect the resident's total charges.
The Texas disclosure form addresses several challenges that consumers of
assisted living can face. The categories of information provided on the
form help to describe for consumers, who often know little about the
industry and may need to make a decision quickly, what facilities can and
cannot do for their residents. They also highlight important issues, such
as the facility's discharge criteria, that prospective residents and their
families should pay attention to in making their selection. In addition,
having comparable information in a concise format for multiple facilities
should make it easier to identify key differences among the facilities
under consideration. However, these benefits depend on when the residents
or their representatives receive the form. If facilities do not distribute
the form to consumers until they sign a contract, it cannot help them in
deciding among available facilities.
State Efforts to Assisted living providers may fall short of meeting state
licensing
standards in part because they lack a full understanding of what the
Facilitate Provider standards require and how to meet them. The experience
of Washington Compliance with State, which for 2 1/2 years employed a
staff of consultants to advise and
train assisted living providers, shows the potential benefits of
licensingLicensing assistance programs in improved provider compliance and
resident Requirements outcomes, as well as the challenge of sustaining
them over time.
Providers Are Sometimes Uncertain about Regulatory Requirements
Regulations that address consumer protection and quality of care generally
cover such areas as admission and discharge criteria, services and level
of care provided, staffing levels and staff training, safety and health
standards, and resident rights.22 To examine regulatory compliance, states
periodically conduct inspections of assisted living facilities. To ensure
that facilities correct their deficiencies, states may require the
facility to prepare a written plan of correction. In addition, states may
conduct reinspections and impose financial penalties, license revocations,
and criminal sanctions. Generally, when deficiencies are found, the
facility has an opportunity to correct them. However, regulatory agencies
expect providers to determine how to accomplish this, drawing on outside
technical advice, if needed, to resolve the issue. According to experts we
interviewed, state agencies face the challenge of inspecting a rapidly
increasing number of assisted living facilities with limited resources.
While national data are not available, a number of inspection reports and
media articles indicate that typical problems relate to inadequate care,
inappropriate discharges, insufficient staffing and training deficiencies,
improper drug storage or errors dispensing medications, and other safety
issues.23
One way to facilitate compliance with licensing regulations is to help
providers achieve a better understanding of what the regulations actually
require. The experts that we interviewed stated that providers often
express confusion about actions they need to take to meet state policy or
regulatory requirements. They noted that providers perceive ambiguities in
regulations that can lead to inconsistent interpretations among different
facility managers as well as individual state inspectors. Moreover, the
rapid industry expansion has brought many new providers into the assisted
living industry whose administrators may not fully understand what they
need to do to meet regulatory requirements. Experts also said that
uncertainties about state requirements could have negative effects on
22American Seniors Housing Association, Seniors Housing: State Regulatory
Handbook (Washington, D.C.: March 2003); Robert Mollica, State Assisted
Living Policy: 2002 (Portland, Maine: National Academy for State Health
Policy, November 2002) Section III; Stephanie Edelstein and Karen Gaddy,
Assisted Living: Summary of State Statutes (Washington, D.C., AARP Public
Policy Institute: 2000).
23Florida Agency for Health Care Administration, Nursing Home and Assisted
Living Facility: Adverse Incidents & Notices of Intent Filed, Report to
the Legislature May 2003 Status Report published in June 2003; Texas
Department of Human Services, Fiscal Year 2003: Long Term Care Regulatory
Annual Report, November 2003; American Bar Association, Assisted Living:
Federal and State Options for Affordability, Quality of Care, and Consumer
Protection, Bifocal Vol. 23. No. 1, Fall 2001; GAO/HEHS-99-27.
consumers. For example, confusion about state rules could induce some
providers to drop out of the market, which might lead to access problems
in some areas, particularly in rural communities that tend to have fewer
assisted living providers to begin with.
According to experts we interviewed, state licensing agencies or other
entities can help providers understand regulations by providing guidance
and training. Licensing assistance can take various forms, including
informal phone conversations, on-site consultation and technical advice,
or training courses. Such assistance may be especially critical for
administrators who are new or relatively inexperienced in the assisted
living industry. Even for established managers, helping them to keep their
facilities in compliance with regulatory requirements benefits consumers
by preventing potentially serious health and safety problems. While many
experts we interviewed noted the value of combining such assistance with
traditional regulatory enforcement measures, not all agreed that state
agencies should provide it. Several noted that industry associations could
also furnish this kind of support for their members. Moreover,
representatives from one advocacy organization argued that efforts by
licensing agencies to provide technical assistance to providers could draw
scarce resources away from their primary responsibility of enforcing state
licensing standards.
Washington Employed Consultants to Assist Providers with State Licensing
Requirements
Washington enacted a law in 1997 to establish a consultative approach to
help assisted living providers meet state licensing requirements.24 In
2000, the state put this approach into operation with the Quality
Improvement Consultation (QIC) program, which created a staff of
consultants within the state's Department of Social and Health Services
(DSHS) to provide training and advice to individual providers. The staff
of nine regionally based consultants conducted site visits, led training
sessions, and responded to telephone inquiries from assisted living
providers throughout the state. These activities continued for 2 1/2
years until, in the midst of a state budget crisis, the state stopped
funding the program.
The QIC program came about in response to provider concerns about a major
structural reorganization in the state's regulation of assisted living. In
1995, the state moved licensing and oversight responsibility for assisted
241997 Wash. Laws c. 392 S: 213 (Wash. Rev. Code S: 18.20.115 (2003)). In
Washington, "assisted living facilities" are referred to as "boarding
homes."
living from the Department of Health to DSHS. Because DSHS also had
enforcement authority over nursing homes, providers anticipated that the
state would approach assisted living regulation as it had nursing home
oversight and lobbied for a more consultative approach. The state
legislature responded by requiring DSHS, within available funding, to
develop the QIC program. DSHS expected the program to enhance provider and
resident satisfaction, improve resident safety and quality of care, and
prevent compliance problems.
A quality improvement advisory group consisting of representatives of
providers, consumers, and the state came together to develop the QIC
program. Most of the group's discussion revolved around the meaning of
"consultation." Provider and consumer representatives differed on whether
providers could be required to participate in the program. Providers
insisted that the program be entirely voluntary, while some ombudsmen
believed that the providers most in need of help might be least likely to
ask for it.25 Provider representatives also expressed concern about the
relationship of the consultants with the DSHS inspectors who enforced the
state's licensing regulations. In particular, they worried that inspectors
could have access to private information that providers had shared with a
consultant, leading to enforcement actions rather than assistance. In
addition, they wanted to prevent such information from appearing in public
records.
After much discussion, the group reached consensus to make the QIC program
voluntary and to define the consultants as adjuncts to, but separate from,
the licensing enforcement process. The consultants would not forward
information to inspectors unless they identified a situation involving
immediate harm to residents. In addition, information obtained from
providers would not be released publicly except in aggregated form. The
state hired nine quality improvement consultants who had extensive
education and experience in quality improvement, training, and
consultation in the assisted living industry. The consultants conducted
onsite facility visits initiated by providers in order to help them
develop and implement quality improvement plans that addressed identified
needs. They also led regional provider training and were available by
telephone to respond to provider inquiries.
25Washington providers specifically rejected the model of a technical
assistance program that would authorize state licensing inspectors to
refer facilities for consultation on a specified topic.
Two evaluations of the QIC program indicated overall positive results in
meeting its goals.26 The first evaluation took place 6 months into the
program. It measured effectiveness through analysis of resident outcomes
and responses to satisfaction questionnaires completed by residents,
ombudsmen, providers, facility staff, and consultants. The second
evaluation occurred 2 years later. It assessed provider compliance with
licensing regulations and satisfaction levels among providers and
ombudsmen who participated in the onsite portion of the program.
After 6 months of operation, about 82 percent of providers voluntarily
participated in the QIC program in some way.27 Moreover, in both
evaluations, a large majority of participating providers expressed
satisfaction with the QIC program. Over 90 percent of those providers
indicated in the first evaluation that the program had effectively
assisted them with compliance. Although this level of satisfaction
declined slightly to about 79 percent 2 years later, providers indicated
in the second evaluation that consultation in a voluntary, mutually
respectful, and collegial manner was the program's most beneficial
component.
Assisted living residents also reported positive outcomes from the
program. In the first evaluation, 90 percent of residents expressed
satisfaction with the results of the program's on-site visits. Among those
residents assessed by consultants on more than one visit, 86 percent
showed improvement in identified areas of concern. These areas involved a
variety of quality of care issues, including administration of medications
and ADL assistance. Similarly, with respect to safety issues, 65 percent
of the residents seen on more than one visit demonstrated improvement in
areas such as prevention of falls.
Finally, both providers and the state attributed improvements in
regulatory compliance partly to the work of the QIC program. The second
evaluation included an analysis of statewide provider compliance prior to
(1998 to 2000) and after implementation (2001 to 2002) of the QIC program.
Although there was a slight increase in the number of state
26Alice Mahar Dupler; Neva L Crogan; Robert Short, "Pathways to quality
improvement for boarding homes: A Washington state model," Journal of
Nursing Care Quality; Jul 2001; 15(4), 1-7; Alice Mahar Dupler, "Quality
Improvement Consultation Program in Assisted Living Facilities, A
Washington State Pilot Program: Phase II," unpublished, no date.
27Among all the state's assisted living facilities, 25 percent engaged in
on-site visits, approximately 36 percent participated in training
sessions, and about 20 percent received telephone consultation.
inspections conducted, the number and percentage of facilities that had
penalties imposed fell substantially. The state imposed fewer civil fines,
conditions on licenses, license revocations, and summary suspensions.
Finding fewer problems during inspections also meant that each inspection
required less time to complete and document, thereby allowing more
efficient use of inspection resources.
Despite its broad support and favorable outcomes, the QIC program ended in
July 2002. After 2 1/2 years of operation, it lost its state funding and
has since remained an unfunded program. According to state officials and
consumer representatives, the program's end was primarily due to funding
constraints. A severe state budget crisis in 2002 put significant pressure
on DSHS to cut costs while maintaining its core functions of conducting
inspection and complaint investigations. The department decided that it
needed more inspectors for this work, and that licensing assistance
through the QIC program had lower priority. However, the provider
representative emphasized that insufficient trust between providers and
the state also contributed to the program's end. While the evaluation
results pointed to substantial success overall in building functioning
relationships, the provider representative described several incidents of
broken confidentiality between providers and consultants that tended to
undermine the providers' willingness to participate in the program. A
state official as well as consumer and provider representatives noted that
the QIC program required collaboration and the sharing of sensitive
information. Such collaboration depended on providers and consultants
developing and sustaining trust among themselves, as well as between
consultants and other state officials, such as inspectors and ombudsmen.
Washington's QIC program illustrates both the challenges and potential
benefits of state efforts to provide licensing assistance to assisted
living providers. A large number of providers chose to take advantage of
the consultative services and training offered by the program. Moreover,
the documented improvements in resident outcomes and in provider
compliance with regulations demonstrate the impact that programs of this
sort can have. However, the staff resources needed to provide this level
of assistance make these programs highly vulnerable in times of budgetary
constraint.
State Efforts to Strengthen Residents' Complaint Procedures
Some assisted living residents have difficulty pursuing complaints with
their providers, particularly in cases involving an involuntary discharge.
Georgia has established a spectrum of procedural remedies specifically for
assisted living residents that appear to strengthen their bargaining
position vis-a-vis providers. Massachusetts created a separate ombudsman
staff dedicated to assisted living residents. As a result, these staff
members have become expert in dealing with the particular problems of
assisted living residents.
Residents Often Have Difficulty Raising Complaints about Their Facilities'
Services and Policies
Concerns about problems in assisted living facilities reinforce the need
to ensure that consumers have adequate mechanisms to raise complaints
about the care they receive in these facilities.28 For the most part,
these mechanisms fall into two broad categories:
o Internal procedures, which specify how residents may lodge complaints
with the facility's management and how management may respond.
o External procedures, which designate an entity outside of the facility
to hear resident complaints and decide on an appropriate resolution. The
outside entity may be a state agency or an independent third party. Such
procedures are most commonly applied to major disputes, such as
involuntary discharges.
A national study found that some states require assisted living facilities
to establish internal complaint procedures, some offer residents a venue
for external appeals, and some offer both.29 In addition, it noted that
some states take measures to ensure that assisted living residents are
aware of these rights, for example by requiring that facilities
prominently post appropriate telephone numbers and the list of resident
rights in that state. However, the national study also found that in 2000
over half of the states had no requirements that assisted living
facilities establish procedures for residents to voice complaints or
appeal provider decisions that adversely affect them.
28For information about significant care and safety problems in assisted
living see GAO/HEHS-99-27; Policy Principles for Assisted Living (April
2003); Assisted Living Workgroup, Assuring Quality in Assisted Living:
Guidelines for Federal and State Policy, State Regulation, and Operations
(April 2003).
29Stephanie Edelstein and Karen Gaddy, Assisted Living: Summary of State
Statutes (Washington, D.C., AARP Public Policy Institute: 2000).
Regardless of their rights to file complaints either internally or
externally, many residents may hesitate to do so for fear of retribution.
According to the experts we interviewed and studies of ombudsmen programs,
many assisted living residents do not want to risk alienating their
providers. Even when state agencies permit the residents to file
complaints anonymously, they may find it difficult to maintain their
anonymity, especially in smaller facilities.
Among the avenues for residents to seek redress of their complaints is
through the long-term care ombudsmen program in each state. The Older
Americans Act directs ombudsmen to represent the interests of residents of
long-term care facilities, including nursing homes and assisted living
facilities.30 The act authorizes the ombudsmen to serve as advocates to
protect the health, safety, welfare, and rights of residents of long-term
care facilities. One of the main responsibilities of ombudsmen is to
investigate and resolve complaints.31 Ombudsmen involvement in assisted
living varies considerably depending on state policies and the resources
available to address the myriad complaints that they receive from all
types of longterm care facilities. However, experts we interviewed noted
that most ombudsmen focus the bulk of their limited resources on nursing
homes. In fiscal year 2002, ombudsmen received four times as many
complaints against nursing homes as assisted living facilities.32
Ombudsmen can help overcome the factors that may inhibit assisted living
residents from filing complaints. During scheduled visits to assisted
living facilities, ombudsmen have the opportunity to educate residents on
their right to file complaints and encourage them to do so. In addition,
while the ombudsmen are on-site they can receive such complaints
discretely.
3042 U.S.C. S: 3058g (2000) (originally enacted as S: 712 of the Older
Americans Act of 1965 by Pub. L. No. 102-375, S: 702, 106 Stat. 1195,1275
(1992)).
31Ombudsmen may receive complaints from residents, family, friends, or
facility staff. Ombudsmen may also initiate a complaint based on their own
observations. Depending on state regulations and the nature of the
complaint, ombudsmen may refer the complaint to another agency, such as
the state licensing agency or adult protective services.
32There were 208,762 nursing home complaints compared to 49,463 assisted
living complaints in FY 2002, according to data from the U.S.
Administration on Aging, representing over twice as many complaints per
resident for nursing homes as for assisted living facilities. Among the
top categories of complaints for assisted living were discharges, billing
charges, staffing shortages, resident care and safety issues. U.S.
Administration on Aging, National Ombudsman Reporting System Data FY 2002.
However, financial constraints may limit the frequency with which
ombudsmen meet with assisted living residents.
Georgia Strengthens Procedural Remedies for Assisted Living Residents
In 1994, Georgia strengthened procedural remedies available to residents
in assisted living facilities by enacting the Remedies for Residents of
Personal Care Homes Act.33 These remedies provide additional consumer
protections beyond the investigation of complaints by its licensing
agency, the Office of Regulatory Services (ORS) within the Department of
Human Resources. The state gave assisted living residents specific
procedural rights to have their complaints heard and redressed. The
remedies include the right to an internal complaint procedure, an
administrative hearing, and specified actions in court. According to
consumer advocates, the 1994 law has enhanced the ability of assisted
living residents to resolve disputes informally with assisted living
providers.
At the time Georgia passed this legislation, assisted living facilities
had recently come under heightened public scrutiny. Consumer advocates and
the media had raised concerns about the lack of adequate oversight, as
evidenced by facilities that maintained extremely poor sanitary conditions
or that admitted residents who required far greater care than the facility
could provide.34 In response, the state legislature sought to provide
assisted living residents with additional consumer protections by creating
procedural remedies specifically for them. In its legislative findings,
the state legislature recognized that residents often lacked the ability
to assert their rights and stated that full consumer protection required
that residents have a means of recourse when their rights were denied.
According to the state official, the legislature modeled the act's
procedural remedies after remedy options given to nursing home residents
through both state and federal law.
331994 Ga. Laws 461, S: 2 (Ga. Code Ann. S:S: 31-8-130 et seq. (2003)). In
Georgia, "assisted living facilities" are referred to as "personal care
homes."
34The absence of state regulatory authority over assisted living
facilities exacerbated these problems. At that time, local public health
districts had oversight responsibility for assisted living facilities, but
according to the state official we interviewed, they lacked the resources
and expertise to perform this function effectively. In 1994, ORS assumed
responsibility for regulating assisted living facilities.
The remedies provided in the 1994 legislation include an internal
complaint procedure and an administrative hearing.35 Residents36 may
submit an oral or written complaint to a facility administrator, who must
either resolve the complaint or respond in writing within 5 business days.
If residents do not find the response satisfactory, they may submit an
oral or written complaint to the state long-term care ombudsman. Residents
also have the right to request an administrative hearing under the Georgia
Administrative Procedure Act.37 They are not required to use any other
legal remedies before requesting such a hearing. The Office of State
Administrative Hearings (OSAH) must conduct the hearing within 45 days of
receiving the request, although state officials may refer the request to
an ombudsman for informal resolution pending the hearing. If the resident
alleges that the provider acted in retaliation for the resident exercising
his or her rights, OSAH must conduct the hearing within 15 days of
receiving the request. The facility cannot transfer a resident before he
has exhausted all appeal rights unless he develops a serious medical
condition or his behavior or condition threatens other residents.
The act also gives residents access to different types of court
proceedings. A resident may file a lawsuit seeking compensation from an
assisted living facility. The resident need not exhaust any of the other
legal remedies before bringing such a suit. This remedy includes a
provision designed to protect residents from retaliation by a provider. If
the provider attempts to remove the resident involuntarily from the
facility within 6 months after the resident exercises one of the available
remedies, the court presumes retaliation in an action by the resident
making that claim unless the provider presents "clear and convincing
evidence" to the contrary. Residents may also file a lawsuit requesting
that the court order a facility to refrain from violating the rights of a
resident. Finally, residents may file a lawsuit for `mandamus'-a court
order to ORS to comply with laws relating to an assisted living facility
or its residents.
These procedural remedies appear to have their greatest effect in
strengthening the position of residents during informal resolution of
disputes. The legal aid representatives we interviewed noted that they
35The legislation uses the term grievance.
36A representative or legal surrogate of the resident may also pursue the
remedies on behalf of the resident.
37Ga. Code Ann. S:S: 50-13-1 et seq. (2003).
resolve most issues between assisted living residents and providers
informally. Advocates for residents said that these procedural remedies
give the advocates added leverage as they negotiate with providers.
However, advocates also stated that they rarely take the next step of
actually filing for administrative hearings or court proceedings, in part
because legal aid cases generally do not reach that step and also because
they believe that the substantive rights of assisted living residents in
Georgia are not strong. For example, a resident objecting to an
involuntary discharge is unlikely to prevail in an administrative hearing
because providers exercise broad discretion in deciding when they can no
longer properly care for a resident. However, by requesting a hearing,
residents can postpone the date by which they must move out, thereby
gaining more time in which to find a suitable place to relocate. Moreover,
according to one legal aid attorney, providers often prefer to resolve a
dispute informally rather than take their chances with an administrative
hearing, because providers typically have little experience with hearings
and prefer to limit their costs for legal representation.
Strengthening Georgia's procedural remedies for assisted living residents
required action by the state legislature, but once approved, the
procedures have imposed minimal costs to the state. An agency to deal with
a wide range of state administrative issues already existed, and with few
hearings involving assisted living residents actually conducted, these
cases represent a small portion of OSAH's operating expenses. Similarly,
the state's long-standing advocates for assisted living
residents-long-term care ombudsmen and legal aid lawyers-have served to
inform both providers and residents about these legal remedies while
carrying out their normal functions. In fact, providers and residents may
remain unaware of their existence, until the advocates have reason to
bring these remedies to their attention in the course of resolving
disputes.
system. According to the state official we interviewed, the primary
purpose of this ombudsman program is to maintain the quality of life,
health, safety, welfare, and rights of assisted living residents by
Massachusetts Established In 1994, Massachusetts passed an assisted living
statute38 that established a an Ombudsman Program statewide assisted
living ombudsman program. The program is a key for Assisted Living element
of the statute, which created a certification system for assisted
living separate from the state's nursing home regulatory and licensure
381994 Mass. Acts 354, S: 3 (Mass. Gen. Laws Ann. ch. 19D, S: 7 (2004)).
designating ombudsman staff specifically for assisted living. It provides
a means for assisted living residents and family members to file and
resolve complaints relating to the quality of services and to residents'
quality of life. However, the program's exclusive reliance on state
funding, under circumstances of state budgetary constraint, has resulted
in limited staff resources available to perform these tasks.
Assisted living ombudsmen serve primarily as mediators and advocates. As
mediators, they receive, investigate, and attempt to resolve problems or
conflicts that occur between a provider and residents. They act as
advocates for residents by referring their cases to the assisted living
certification office or elder protective services, when warranted. In
addition, the ombudsmen respond to inquiries by consumers considering
assisted living as a long-term care option. They also respond to providers
requesting advice. To accomplish these tasks, the ombudsmen make site
visits to assisted living facilities, typically in the context of a
serious complaint allegation and sometimes together with certification
staff.
The organizational placement of the ombudsman program within the state's
Executive Office of Elder Affairs (EOEA) is designed to balance program
autonomy and coordination with related programs. EOEA oversees both the
assisted living ombudsman and certification programs. According to the
state official, staff members from both programs coordinate activities,
communicate often, and refer cases to each other. This working
relationship has helped give the ombudsman more leverage when dealing with
providers. However, representatives for both the state and assisted living
providers agree that the ombudsman program should remain separate
organizationally from the certification program because they perform
different functions. Previously, when the staff of the two programs had
reported to the same individual in EOEA, providers became confused about
the programs' respective roles during a visit. A subsequent restructuring
of EOEA placed the certification and ombudsmen in separate divisions.
Shared EOEA administration also links the assisted living ombudsmen to
other programs serving elderly clients, such as elderly protective
services and the long-term care ombudsmen program. The state has
emphasized coordination with elderly protective services to ensure that
assisted living residents found in abusive situations quickly receive the
help they need.39
39 See U.S. General Accounting Office, Nursing Homes: More Can Be Done to
Protect Residents from Abuse, GAO-02-312 (Washington, D.C.: Mar. 1, 2002).
In addition, by placing assisted living ombudsmen in the same office of
EOEA as long-term care ombudsmen, Massachusetts has attempted to maintain
a degree of communication and coordination across the different long-term
care settings. As described by the provider representative we interviewed,
this arrangement allows for "cross-fertilization" between the different
programs. Although the programs differ substantially in their approach to
ensuring quality care, assisted living ombudsmen can nevertheless draw
upon the decades-long experience residing in the long
40
term care program.
Massachusetts' assisted living ombudsman program regulations41 called for
a structure similar to that of the existing long-term care ombudsman
program. According to the state official, the long-term care ombudsman
program has a full-time training position and several regional
coordinators responsible for recruiting, training, and overseeing
volunteers who make site visits to nursing homes on a regular basis
throughout the state. However, according to the state official, the
assisted living ombudsman program never received sufficient funding to
develop this type of structure. Although the regulations authorized a
similar network of volunteers, the program staff has consisted of no more
than three professionals, later reduced to two, who handle complaints and
inquiries for 172 assisted living facilities. That left no one available
to recruit, train, and supervise volunteers, and consequently, visits to
facilities only occurred in response to complaints and not on a routine
basis.
The Massachusetts legislature funded the assisted living ombudsman program
by creating an assisted living administrative fund,42 which received the
fees paid biennially by facilities as part of the certification process.
The ombudsman shared these funds with the assisted living certification
staff. However, in response to statewide budgetary pressures, the
legislature eliminated this fund in fiscal year 2003 and redirected the
40The state official we interviewed described how the state's vision of
assisted living follows the "social model," while the Department of Public
Health applies the "medical model" to nursing homes and related
institutions. The social model seeks to create a homelike environment that
emphasizes independence over the provision of health care services or
personal care assistance. The medical model focuses more on clinical
issues, such as proper medication and nursing services. The state's
long-term care ombudsman program correspondingly follows the medical model
approach while the assisted living ombudsman program adheres to the social
model.
41Mass. Regs. Code tit. 651, S:S: 13.00 et seq.
421995 Mass. Acts 38, S: 45 (Mass. Gen. Laws Ann. ch. 29, S: 2BB (1995)).
Concluding Observations
certification fees to the state's general revenues.43 Meanwhile, the
longterm care ombudsman program continued to operate largely with federal
funds, authorized under the Older Americans Act.
The state and provider representatives we spoke with agreed that having a
separate assisted living ombudsman program led its staff to become
increasingly knowledgeable about assisted living and the particular
problems that arise within it. Both providers and residents benefit from
the fact that assisted living ombudsmen do not have to balance the needs
of residents from different types of long-term care facilities. However,
the decision to fund the program solely through the state made it
especially vulnerable to budgetary cutbacks when Massachusetts faced
constrained fiscal circumstances. Although the federally supported state
long-term care ombudsman programs also contend with scarce resources
nationwide, the Massachusetts assisted living ombudsman program highlights
the difficulty of sustaining this type of program with state funds alone.
Florida, Texas, Washington, Georgia, and Massachusetts have each found
ways to enhance the experience of assisted living residents in their
states. They have done so by developing information resources, expanding
complaint mechanisms, or allocating state resources to assisted living
programs. However, those initiatives that required increases in state
staff or funds fared less well during periods of fiscal constraint. The
demise of the Washington QIC program, despite its well-documented
favorable outcomes, and cutbacks in the popular Massachusetts assisted
living ombudsman program, reflect the vulnerability of any discretionary
state program to budget reductions. Florida's Web site, Texas' disclosure
form, and Georgia's procedural remedies, by contrast, have benefited from
the important advantage that none of these programs required substantial
resources to initiate and maintain. These examples from five states can
perhaps aid other states in developing their own approaches to helping
senior citizens take full advantage of assisted living alternatives to
nursing home care.
432003 Mass. Acts 26, S:140 (effective June 30, 2003) (Mass. Gen. Laws
Ann. ch. 29, S: 2BB (2004)).
Comments from the
States
We sent sections from an earlier draft of this report to state officials
in Florida, Texas, Washington, Georgia, and Massachusetts and asked them
to check that the section accurately described the development and
implementation of their state's program. Officials from all five states
responded and provided technical comments that we incorporated where
appropriate.
As agreed with your offices, unless you publicly announce the contents of
this report earlier, we plan no further distribution of it until 30 days
from
its date. At that time, we will send copies of this report to interested
parties. In addition, this report will be available at no charge on GAO's
Web site at http://www.gao.gov. We will also make copies available to
others upon request.
If you or your staff have any questions about this report, please call me
at
(312) 220-7600. An additional contact and other staff members who
prepared this report are listed in appendix IV.
Leslie G. Aronovitz
Director, Health Care-Program
Administration and Integrity Issues
Appendix I: Key Sources Consulted
National Organizations and Academic Experts
Alzheimer's Association
American Association of Homes and Services for the Aging
American Bar Association Commission on Law and Aging
American Seniors Housing Association
Assisted Living Federation of America
Association of Health Facility Survey Agencies
Consumer Consortium on Assisted Living
National Association for Regulatory Administration
National Association of State Long-Term Care Ombudsman Programs
National Association of State Units on Aging
National Center for Assisted Living
National Citizens' Coalition for Nursing Home Reform
NCB Development Corporation, The Coming Home Program
Catherine Hawes, Texas A&M University
Robert Mollica, National Academy for State Health Policy
Janet O'Keeffe, Research Triangle Institute
Major Studies on Assisted Living
Catherine Hawes, et al., A National Study of Assisted Living for the Frail
Elderly: Results of A National Survey of Facilities (Beachwood, Ohio:
December 1999).
Maureen Mickus, "Complexities and Challenges in the Long Term Care Policy
Frontier: Michigan's Assisted Living Facilities" (Michigan State
University Applied Public Policy Research Program: September 2002).
Robert Mollica and Robert Jenkens, State Assisted Living Practices and
Options: A Guide for State Policy Makers (National Academy for State
Health Policy and NCB Development Corporation: September 2001).
Janet O'Keeffe, et al., Using Medicaid to Cover Services for Elderly
Persons in Residential Care Settings: State Policy Maker and Stakeholder
Views in Six States, Research Triangle Institute, prepared at the request
of the U.S. Department of Health and Human Services (December 2003).
Appendix I: Key Sources Consulted
Charles D. Phillips, et al., Residents Leaving Assisted Living:
Descriptive and Analytic Results from a National Survey, prepared at the
request of the U.S. Department of Health and Human Services, Office of the
Assistant Secretary for Planning and Evaluation, June 2000.
Brenda Spillman et al., Trends in Residential Long-Term Care: Use of
Nursing Homes and Assisted Living and Characteristics of Facilities and
Residents, Washington, D.C.: Urban Institute, prepared at the request of
the U.S. Department of Health and Human Services, Office of the Assistant
Secretary for Planning and Evaluation, November 2002.
U.S. General Accounting Office, Assisted Living: Quality-of-Care and
Consumer Protection Issues in Four States, GAO/HEHS-99-27 (Washington,
D.C.: Apr. 26, 1999)
U.S. General Accounting Office, Long-Term Care: Consumer Protection and
Quality-of-Care Issues in Assisted Living, GAO/HEHS-97-93 (Washington,
D.C.: May 15, 1997).
Guides on State Assisted Living Regulations
American Seniors Housing Association, Seniors Housing: State Regulatory
Handbook, March 2003.
Lyn Bentley, Assisted Living State Regulatory Review 2004, National Center
for Assisted Living (March 2004).
Stephanie Edelstein, et al., Assisted Living: Summary of State Statutes
(in 3 volumes) AARP, 2000.
Robert Mollica, State Assisted Living Policy: 2002 (Portland, Maine:
National Academy for State Health Policy, November 2002).
State-level Entities
We interviewed officials or individuals associated with the following
entities:
Florida Department of Elder Affairs Florida Assisted Living Affiliation
Senior Resource Alliance (Florida) Texas Department of Human Services
Texas Assisted Living Association
Appendix I: Key Sources Consulted
Texas Assisted Living Advisory Committee
Washington Department of Social and Health Services
Washington Health Care Association
Washington Long-term Care Ombudsman Program
Georgia Long-Term Care Ombudsman Program
Georgia Legal Aid Program
Senior Citizens Law Project (Georgia)
Assisted Living Association of Georgia
Massachusetts Executive Office of Elder Affairs
Massachusetts Assisted Living Facilities Association
State-level Studies
Alice Mahar Dupler, Neva L Crogan, and Robert Short, "Pathways to quality
improvement for boarding homes: A Washington state model," Journal of
Nursing Care Quality; Jul 2001; 15(4), 1-7.
Alice Mahar Dupler, "Quality Improvement Consultation Program in Assisted
Living Facilities, A Washington State Pilot Program: Phase II,"
unpublished, no date.
Appendix II: Florida Affordable Assisted
Living "Find-a-Facility" Consumer Search
To begin your search, please enter a zip code or select a county:
Zip Code OR County
Select payment option(s):
OS Private Pay
OS Government Subsidies Accepted
Select monthly price range:
OS under $800 OS $800-$1200 OS $1201-$1600 OS $1601-$2000 OS Over $2000
Select residential unit preference(s):
OS Single Occupancy Unit
OS Double/Multiple Occupancy Unit
OS Individual Apartment with Kitchen
OS Fully Furnished
OS Private Bath
OS Pets Allowed
OS Dementia (Secured) Units
Select all services you are seeking:
OS Adult Day Care Service
OS Alzheimer's Disease / Dementia Care
OS Assistance with Medications
OS Assistance with the activities of daily living (ADLs)
OS Assistance with Transferring
OS Escort Service for Medical Appointments
OS Incontinence Care
OS Individual Personal Care Attendant
OS Kosher Meals
OS Licensed Nurse on Duty
OS Medication Administration by Licensed Nurses
OS Respite (Short term) Care
OS Special Diets
OS Special Language Preference
Appendix II: Florida Affordable Assisted Living "Find-a-Facility" Consumer
Search
Select all special accommodations and services you are seeking:
OS ALE Medicaid Waiver Provider
OS Emergency Placement
OS Extended Congregate Care Services
OS Full Laundry Service
OS Independent Living Units
OS Limited Nursing Services
OS Skilled Nursing Unit
OS Transportation Service
OS Wellness Center
Select special residency requirements:
OS Catheter
OS Developmentally Disabled
OS Diabetic
OS Hospice (Must meet admission criteria)
OS Stage 1 or 2 Decubitus Ulcer (Pressure Sore)
OS Visual/Hearing Impairment
OS Wheelchair-bound
Source: http://www.floridaaffordableassistedliving.org
Appendix III: Texas Assisted Living Disclosure Statement
Appendix III: Texas Assisted Living Disclosure Statement Appendix III: Texas
Assisted Living Disclosure Statement Appendix III: Texas Assisted Living
Disclosure Statement Appendix III: Texas Assisted Living Disclosure Statement
Appendix IV: GAO Contact and Staff Acknowledgments
GAO Contact Rosamond Katz, (202) 512-7148
Acknowledgments Eric Peterson, Carmen Rivera-Lowitt, and Janet Rosenblad
made major contributions to this report.
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