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Report to Congressional Requesters:

United States General Accounting Office:

GAO:

April 2004:

Assisted Living:

Examples of State Efforts to Improve Consumer Protections:

GAO-04-684:

GAO Highlights:

Highlights of GAO-04-684, a report to congressional requesters 

Why GAO Did This Study:

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.

What GAO Found:

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.

[End of section]

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:

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:

GAO Contact:

Acknowledgments:

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:

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.[Footnote 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.

Results in Brief:

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 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.

Background:

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.[Footnote 2] 
However, states vary 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 aged[Footnote 3]--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.[Footnote 
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.[Footnote 5] Eighty-six percent of residents require or accept 
help with medication.[Footnote 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 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.[Footnote 7] This study also found that less than 
half of the facilities would admit or retain residents with moderate to 
severe cognitive problems.[Footnote 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.[Footnote 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.[Footnote 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 Medicaid and other federal and state funds 
to help finance such care.[Footnote 11] As of October 2002, 41 states 
used Medicaid reimbursement to cover assisted living or related 
services for more than 102,000 people.[Footnote 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.[Footnote 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.[Footnote 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.

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.[Footnote 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 Enhance Consumer Information on Facility Options:

Given the wide diversity among assisted living facilities in the 
services they offer and the populations they are prepared to serve, 
prospective assisted living residents can have difficulty finding an 
appropriate--let alone the most appropriate--facility to meet their 
individual needs. Initiatives such as the Florida "Find-a-Facility" Web 
site and the Texas 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, 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.[Footnote 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.[Footnote 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 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.[Footnote 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 
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.[Footnote 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.

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.[Footnote 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 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.[Footnote 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 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 Facilitate Provider Compliance with Licensing 
Requirements:

Assisted living providers may fall short of meeting state licensing 
standards in part because they lack a full understanding of what the 
standards require and how to meet them. The experience of Washington 
State, which for 2 ˝ years employed a staff of consultants to advise 
and train assisted living providers, shows the potential benefits of 
licensing assistance programs in improved provider compliance and 
resident 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.[Footnote 
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.[Footnote 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 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.[Footnote 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 ˝ 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 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.[Footnote 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.

Two evaluations of the QIC program indicated overall positive results 
in meeting its goals.[Footnote 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.[Footnote 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 
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 ˝ 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.[Footnote 
28] For the most part, these mechanisms fall into two broad categories:

* Internal procedures, which specify how residents may lodge complaints 
with the facility's management and how management may respond.

* 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.[Footnote 
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.

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.[Footnote 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.[Footnote 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 long-term 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.[Footnote 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. 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.[Footnote 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.[Footnote 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.

The remedies provided in the 1994 legislation include an internal 
complaint procedure and an administrative hearing.[Footnote 35] 
Residents[Footnote 36] 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.[Footnote 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 
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.

Massachusetts Established an Ombudsman Program for Assisted Living:

In 1994, Massachusetts passed an assisted living statute[Footnote 38] 
that established a statewide assisted living ombudsman program. The 
program is a key element of the statute, which created a certification 
system for assisted living separate from the state's nursing home 
regulatory and licensure 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 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.[Footnote 39] 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-term care 
program.[Footnote 40]

Massachusetts' assisted living ombudsman program regulations[Footnote 
41] 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,[Footnote 
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 certification fees to the state's general 
revenues.[Footnote 43] Meanwhile, the long-term 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.

Concluding Observations:

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.

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.

Signed by: 

Leslie G. Aronovitz: 
Director, Health Care--Program Administration and Integrity Issues:

[End of section]

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).

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: 
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.

[End of section]

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):

Private Pay Government Subsidies Accepted:

Select monthly price range:

under $800; 
$800-$1200; 
$1201-$1600; 
$1601-$2000; 
Over $2000:

Select residential unit preference(s):

Single Occupancy Unit: 
Double/Multiple Occupancy Unit: 
Individual Apartment with Kitchen: 
Fully Furnished: 
Private Bath: 
Pets Allowed: 
Dementia (Secured) Units:

Select all services you are seeking:

Adult Day Care Service: 
Alzheimer's Disease / Dementia Care: 
Assistance with Medications: 
Assistance with the activities of daily living (ADLs): 
Assistance with Transferring: 
Escort Service for Medical Appointments: 
Incontinence Care: 
Individual Personal Care Attendant: 
Kosher Meals: 
Licensed Nurse on Duty: 
Medication Administration by Licensed Nurses: 
Respite (Short term) Care: 
Special Diets: 
Special Language Preference:

Select all special accommodations and services you are seeking:

ALE Medicaid Waiver Provider: 
Emergency Placement: 
Extended Congregate Care Services: 
Full Laundry Service: 
Independent Living Units: 
Limited Nursing Services: 
Skilled Nursing Unit: 
Transportation Service: 
Wellness Center:

Select special residency requirements:

Catheter: 
Developmentally Disabled: 
Diabetic Hospice (Must meet admission criteria): 
Stage 1 or 2 Decubitus Ulcer (Pressure Sore): 
Visual/Hearing Impairment: 
Wheelchair-bound: 

Source: http://www.floridaaffordableassistedliving.org:

[End of section]

Appendix III: Texas Assisted Living Disclosure Statement:

[See PDF for image]

[End of section]

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.

FOOTNOTES

[1] In this report, we use the term "complaint procedure" to encompass 
state policies that refer to either complaints or grievances.

[2] Independent 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.

[3] American 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.

[4] Robert Mollica, State Assisted Living Policy: 2002 (Portland, Me.: 
National Academy for State Health Policy, November 2002).

[5] In 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.

[6] Residents need differing levels of assistance with medication, such 
as supervision of self-medication or medicine storage and dispensing. 
National Center for Assisted Living, Assisted Living: Independence, 
Choice, and Dignity (March 2001).

[7] Catherine 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.

[8] The 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.

[9] 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).

[10] The 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).

[11] Assisted 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).

[12] Robert Mollica, State Assisted Living Policy: 2002 (Portland, 
Maine: National Academy for State Health Policy, November 2002).

[13] Although 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 Quality-of-Care Issues in Assisted Living, GAO/HEHS-97-93 
(Washington, D.C.: May 15, 1997).

[14] Robert Mollica, et al, State Assisted Living Practices and 
Options: A Guide for State Policy Makers, (Washington, D.C.: 
Development Corporation: September 2001).

[15] 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) and GAO/HEHS-97-93. 

[16] White 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). 

[17] See State Assisted Living Policy: 2002 (Portland, Maine: National 
Academy for State Health Policy, November 2002), section 1.5.

[18] Found at www.floridaaffordableassistedliving.org.

[19] DOEA 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.

[20] 1999 Tex. Gen. Laws ch. 233 §1 (Tex. Health & Safety § 247.026 
(2003)).

[21] 40 Tex. Admin. Code § 92.41(d).

[22] American 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).

[23] Florida 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.

[24] 1997 Wash. Laws c. 392 § 213 (Wash. Rev. Code § 18.20.115 (2003)). 
In Washington, "assisted living facilities" are referred to as 
"boarding homes."

[25] Washington 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. 

[26] Alice 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.

[27] Among 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.

[28] For 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).

[29] Stephanie Edelstein and Karen Gaddy, Assisted Living: Summary of 
State Statutes (Washington, D.C., AARP Public Policy Institute: 2000).

[30] 42 U.S.C. § 3058g (2000) (originally enacted as § 712 of the Older 
Americans Act of 1965 by Pub. L. No. 102-375, § 702, 106 Stat. 
1195,1275 (1992)).

[31] Ombudsmen 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.

[32] There 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.

[33] 1994 Ga. Laws 461, § 2 (Ga. Code Ann. §§ 31-8-130 et seq. (2003)). 
In Georgia, "assisted living facilities" are referred to as "personal 
care homes."

[34] The 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.

[35] The legislation uses the term grievance.

[36] A representative or legal surrogate of the resident may also 
pursue the remedies on behalf of the resident.

[37] Ga. Code Ann. §§ 50-13-1 et seq. (2003).

[38] 1994 Mass. Acts 354, § 3 (Mass. Gen. Laws Ann. ch. 19D, § 7 
(2004)).

[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). 

[40] The 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.

[41] Mass. Regs. Code tit. 651, §§ 13.00 et seq.

[42] 1995 Mass. Acts 38, § 45 (Mass. Gen. Laws Ann. ch. 29, § 2BB 
(1995)).

[43] 2003 Mass. Acts 26, §140 (effective June 30, 2003) (Mass. Gen. 
Laws Ann. ch. 29, § 2BB (2004)).

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