United States General Accounting Office

GAO Report to the Honorable

Ron Wyden, U.S. Senate

May 1997 LONG-TERM CARE

Consumer Protection

and Quality-of-Care

Issues in Assisted

Living

GAO/HEHS-97-93

GAO United States

General Accounting Office

Washington, D.C. 20548

Health, Education, and

Human Services Division

B-276379 

May 15, 1997

The Honorable Ron Wyden

United States Senate

Dear Senator Wyden:

Many view assisted living as a promising option for providing care and

help to an increasing number of frail elderly persons in a less costly and

more homelike setting than nursing homes. Assisted living facilities (ALF)

are similar to other residential care settings, such as board and care

facilities, that offer housing, meals, protective oversight, and personal

assistance to persons with physical or cognitive disabilities. Unlike

nursing homes or many board and care settings, however, assisted living

attempts to provide consumers with greater autonomy and control over

their living and service arrangements.

Consumer demand for assisted living appears to be high, and Fortune

magazine has identified it as one of the top three potential growth

industries for 1997.1

 However, recent media accounts and other reports

have highlighted instances where assisted living residents have been

harmed or died as a result of alleged inadequate care and supervision.

Because of your concern about these reports, you asked us to (1) provide

a brief overview of the responsibilities of federal and state governments

and ALFs in ensuring quality and protecting consumers living in ALFs and

(2) identify issues that may require further research.

To conduct our work, we interviewed key officials and experts including

federal and state officials, researchers, provider representatives, attorneys,

and consumer advocates. In addition, we reviewed literature and current

research on the subject. We performed our work from December 1996

through March 1997 in accordance with generally accepted government

auditing standards.

1

Precise numbers of facilities and residents are difficult to obtain because there is no generally

accepted definition of assisted living and no systematic means of counting these facilities. The

Assisted Living Federation of America (ALFA) estimates that as many as 40,000 ALFs care for up to

1 million residents. Preliminary estimates by the Research Triangle Institute place the number of ALFs

at between 17,000 and 25,000 depending on definitional criteria. Further study by the Research

Triangle Institute, under contract to the Office of the Assistant Secretary for Planning and Evaluation

(ASPE) in the Department of Health and Human Services (HHS), includes work to refine these

estimates.

Page 1 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

Results in Brief A number of federal agencies have some jurisdiction over consumer

protection and quality of care in ALFs. However, states have the primary

responsibility for developing standards and monitoring care provided in

ALFs. A recent compilation of state assisted living activities shows that

state approaches to oversight vary. Some states regulate these facilities

under standards previously developed for the board and care industry;

some have developed standards and licensing requirements specifically for

ALFs; others are in the process of developing them. But little is known

about the effectiveness of the various state approaches to regulation and

oversight or about the extent of problems assisted living residents may be

experiencing. Moreover, some stakeholders are concerned that the rapid

rate of assisted living market development may be outpacing many states’

ability to monitor and regulate care furnished by providers.

Not only do state approaches to regulation of ALFs vary, the level and

intensity of services provided in ALFs may also vary. According to some

experts, consumers can find themselves in a facility unable to meet their

expected needs. To determine whether the ALF setting is appropriate for

them, prospective residents rely on facility-supplied information including

contracts that set forth residents’ rights and provider responsibilities. But

one recent limited study found that contracts varied in detail and, in some

cases, were vague and confusing. For example, a number of contracts

stated only that services would be provided as the facility deemed

appropriate, and few specified what occurs if a resident’s health status

declines. Overall, little is known about the accuracy and adequacy of

information furnished to individuals and their families who are

considering assisted living.

Many of these concerns about consumer protection and quality of care in

assisted living have been identified by state governments, providers, and

consumer advocates. Although several research efforts are under way

currently, further research may be needed to determine (1) the nature and

extent of problems related to consumer protection and quality of care that

may be occurring, (2) the effectiveness and adequacy of existing models of

oversight and regulation, and (3) the accuracy and adequacy of

information provided to consumers and whether that information enables

them to make informed choices about their care.

Background Assisted living may be defined as a special combination of housing,

personalized supportive services, and health care. It is designed to

respond to the needs of individuals who require help with activities of

Page 2 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

daily living (ADL),2 but who may not need the level of skilled nursing care

provided in a nursing home.3

 However, there is no uniform assisted living

model, and considerable variation exists in what is labeled an ALF. (See

app. I for selected assisted living definitions.) For example, an ALF can be a

small residential care home providing limited personal care assistance to a

few residents; it may also be a large congregate living facility providing a

variety of specialized health and related services to more than 100

residents.

Assisted living is usually viewed as a specific residential care setting along

the continuum between independent living and a nursing home. ALFs are

similar to board and care homes in that both may provide protective

oversight and assistance with some ADLs and other needs such as

medication administration.4

 According to assisted living advocates,

however, what may not be evident in board and care is the assisted living

philosophy that emphasizes residents’ autonomy, maximum

independence, and respect for individual resident preferences. Moreover,

ALFs may sometimes admit or retain residents who meet the level-of-care

criteria for admission to a nursing home.

According to a 1993 study, many ALFs tend to serve a frail and vulnerable

population who, in some cases, are more disabled than facility managers

anticipated.5

 This study also found some ALFs that cared for residents who

used catheters or oxygen, and a few who used ventilators. A 1996 industry

survey described the typical resident as6

• a single or widowed female,

• average age of about 84, and

• needing assistance with three ADLs such as continence and mobility.

2

ADLs generally include eating, bathing, dressing, getting to and using the bathroom, getting in or out

of a bed or chair, and mobility.

3

Consumer demand for assisted living services appears to be high due to (1) an aging population,

(2) increased geographic dispersion of families, and (3) fewer family caregivers available for a growing

number of elderly persons.

4

“Board and care” describes a wide variety of nonmedical, community-based, residential

facilities—group homes, foster homes, adult homes, domiciliary homes, personal care homes, and rest

homes.

5

Rosalie A. Kane and Keren Brown Wilson, Assisted Living in the United States: A New Paradigm for

Residential Care for Frail Older Persons? (Washington, D.C.: American Association of Retired Persons

(AARP)/Public Policy Institute, 1993).

6

These results are from a 1996 survey by ALFA and Coopers and Lybrand of 268 ALFs representing

about 15,000 units in 35 states.

Page 3 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

In addition, this survey found that 48 percent of residents had some

cognitive impairment, such as Alzheimer’s disease or other memory

disorder, and 38 percent used walkers or wheelchairs.

Most residents pay for assisted living out of pocket or through other

private funding.7

 However, public sources of funding are available to pay

for some residents in ALFs. For example, some states are looking to control

their rising Medicaid costs through a variety of means that include using

assisted living as an alternative to more expensive nursing home care.

According to a 1996 report issued by the National Academy for State

Health Policy, 22 states currently make Medicaid funds available for

assisted living.8

States Primarily

Responsible for

Oversight of Assisted

Living

A number of federal agencies bear some responsibility for aspects of

consumer protection and quality of care in ALFs. (See app. II for a listing of

federal agencies administering laws related to assisted living.) However,

even where the federal government does play a role, most oversight

functions rest with the states. For example, the Social Security

Administration (SSA) and the Health Care Financing Administration (HCFA)

have some authority related to assisted living. The Keys Amendment to the

Social Security Act, which added section 1616(e), requires states to certify

that they will establish, maintain, and enforce standards for any category

of group living arrangement in which a significant number of

Supplemental Security Income (SSI) recipients reside, or are likely to

reside. Such settings may include board and care facilities or ALFs. HCFA

requires states that have been granted a Medicaid home and

community-based care waiver that includes ALF services to provide

assurances that necessary safeguards have been taken to protect

residents’ health and safety. In both of these examples, the federal

government grants broad discretion to states in carrying out their

oversight responsibilities.

Few federal standards or guidelines govern assisted living, and states have

the primary responsibility for oversight of care furnished to assisted living

7

Assisted living developers have targeted elderly persons with moderate and upper incomes. The ALFA

and Coopers and Lybrand survey found the average cost of assisted living in 1996 to be approximately

$2,150 per month.

8

According to the American Public Welfare Association, 12 of these states have Medicaid home and

community-based care waivers that include assisted living as a specific waiver service. Other states

provide assisted living services under the waiver using a variety of different terms including

domiciliary care homes, supported living, and adult congregate living facilities.

Page 4 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

residents. In general, states’ regulations tend to focus on three main areas:

requirements for the living unit; admission and retention criteria; and the

types and levels of services that may be provided. However, states vary

widely on what they require. For example, state regulations differ in their

(1) licensing standards concerning admission and discharge criteria,

staffing ratios, and training requirements; (2) inspection procedures that

specify frequency, notification requirements, and inspector training; and

(3) the range of enforcement mechanisms that are available and used.

States also vary widely on the category or model under which they

regulate these facilities. Some states regulate ALFs under existing board

and care standards, some have created regulations specific to ALFs only,

and others are studying how best to regulate these settings.9

 Regarding

states’ regulation of board and care, our past reports and those by others

have found enforcement of standards to be weak and authorized sanctions

to be used infrequently.10 According to an AARP report, fines, even when

authorized, were seldom imposed, and authority to ban admissions was

limited and rarely used. But little is known about the effectiveness of

board and care regulations as applied to ALFs. These reports also found the

board and care home industry to have numerous quality problems, such as

residents suffering from dehydration or denied adequate medical care.

However, little is known about the specific quality-of-care problems ALF

residents may be experiencing and whether their experiences differ from

board and care residents.

Some states, including Oregon, Florida, and Connecticut, have developed

specific regulations and licensing requirements for ALFs, and others are

moving forward to develop them. According to consumer advocates and

others, state efforts to regulate assisted living are challenged by the need

to develop an approach that is flexible enough to allow for innovation in

response to consumer demands and preferences yet that also protects

residents who may be vulnerable due to physical or cognitive impairment.

For example, Oregon has specific living unit requirements but not specific

staffing requirements; for staffing, it requires that the facility’s staffing is

sufficient to deliver services specified in resident plans of care. Little is

known about the effectiveness of these new approaches for ensuring

quality of care in ALFs. (App. III includes a listing of recent state

9

Robert L. Mollica and Kimberly Irvin Snow, State Assisted Living Policy: 1996 (Portland, Me.: National

Academy for State Health Policy, Nov. 1996).

10For example, see Board and Care: Insufficient Assurances That Residents’ Needs Are Identified and

Met (GAO/HRD-89-50, Feb. 10, 1989) and Catherine Hawes and others, The Regulation of Board and

Care Homes: Results of a Survey in the 50 States and the District of Columbia, Research Triangle

Institute for AARP, Research Triangle Park, N.C.: 1993).

Page 5 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

developments in assisted living policy and regulation as compiled by the

National Academy for State Health Policy.)

Facilities’

Responsibilities

Outlined in Resident

Contracts

Given the variation in what is labeled assisted living and the variety of

ways states regulate these settings, consumers often must rely on

information supplied to them by the provider to determine whether an

assisted living setting is appropriate for their needs. Although marketing

materials may contain information about facility standards and services,

the written contract between the facility and the resident is the key

document governing care to be provided. This document generally

specifies the facility’s responsibility to the resident, how the facility will

respond to the resident’s needs and changes in health status, how quality

care will be maintained, and the resident’s rights and responsibilities.

However, little is known about the accuracy and adequacy of information

furnished to individuals and their families. As a result, consumers may be

at risk if they lack the necessary information to make informed decisions

about their care.

A recent limited survey of industry practices noted that contracts had no

standard format, varied in detail and usefulness, and in some cases were

vague and confusing.11 For example, none of the contracts examined

mentioned how often services would be provided; a number of contracts

stated only that services would be provided as the facility deemed

appropriate. Furthermore, few specified what would occur if a resident’s

health status declined, such as what needed additional services would be

provided, whether there are additional charges for those services, or

whether the resident would be asked to leave because needed services

could not be furnished.

According to some experts, a provision contained in some contracts that

may raise consumer protection concerns is commonly referred to as the

“negotiated risk agreement.” When signing this agreement, the resident

agrees to limit the facility’s potential liability for specific risks the resident

assumes. For example, a mobility-impaired resident advised by the

provider not to use stairs may sign an agreement accepting the risk of

harm from potential falls should the resident continue this activity.

Perceiving unequal bargaining power between facilities and residents,

some experts have raised concerns that written agreements, such as

11John Richard Buck, “Assisted Living: An Uncharted Course,” Bifocal, Newsletter of the Commission

on Legal Problems of the Elderly, American Bar Association, Vol. 16, No. 4 (winter 1996), pp. 1-7, and

“Can Your Loved Ones Avoid a Nursing Home: The Promise and Pitfalls of Assisted Living,” Consumer

Reports (Oct. 1995), pp. 656-59.

Page 6 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

assisted living service contracts and negotiated risk agreements, may place

the resident at risk of exploitation. However, we have no indication of

whether, or how often, this occurs.

Issues Needing

Further Research

Many of these consumer protection and quality-of-care concerns are

shared by state governments, advocates, and provider organizations, and

several groups are actively engaged in developing new oversight and

regulatory models specific to assisted living. For example, two national

initiatives under way currently are the Quality Initiative for Assisted Living

and the Assisted Living Quality Coalition.12 (A brief summary of these

efforts and other current research is included in app. IV.) However, little is

known about the extent of quality-of-care problems in ALFs, and few efforts

have been made to assess the effectiveness of the various state quality

assurance approaches. Furthermore, little is known about the accuracy

and adequacy of information ALFs furnish to consumers and their families.

Further research is needed to determine (1) the nature and extent of

problems related to consumer protection and quality of care that may be

occurring in this developing market, (2) the effectiveness and adequacy of

existing models of oversight and regulation and whether problems are

being identified and corrected, and (3) the accuracy and adequacy of

information provided to consumers and whether the information enables

them to make informed choices about their care. Research into these

questions should shed light on whether additional or new oversight

requirements are needed to protect consumers and ensure quality of care

in ALFs.

Agency Comments Because no federal agency or program was the focus of our review, we did

not obtain official agency comments. However, officials from the Office of

the Assistant Secretary for Planning and Evaluation in HHS reviewed a draft

of this report. They generally agreed with its contents and provided

technical comments, which we incorporated as appropriate.

As agreed with your office, unless you publicly announce its contents

earlier, we plan no further distribution of this report until 30 days from its

date of issue. At that time, we will send copies to the Secretary of Health

and Human Services, the Commissioner of Social Security, the

12The Quality Initiative for Assisted Living is an effort of the American Health Care Association

(AHCA). The Assisted Living Quality Coalition is a joint project of AARP, ALFA, the Alzheimer’s

Association, and the American Association of Homes and Services for the Aging (AAHSA).

Page 7 GAO/HEHS-97-93 Assisted Living Quality Issues
B-276379 

Administrator of the Health Care Financing Administration, relevant

congressional committees, and other interested parties. Copies will also be

made available to others on request.

If you or your staff have any questions about this report, please call me at

(202) 512-7119 or Sandra K. Isaacson, Assistant Director, at (202) 512-7174.

Other major contributors to this report were Eric R. Anderson and Connie

J. Peebles.

Sincerely yours,

Bernice Steinhardt

Director, Health Services Quality

 and Public Health Issues

Page 8 GAO/HEHS-97-93 Assisted Living Quality Issues
Page 9 GAO/HEHS-97-93 Assisted Living Quality Issues
Contents

Letter 1

Appendix I 

Selected Assisted

Living Definitions

12

U.S. Health Care Financing Administration 12

American Association of Homes and Services for the Aging 12

American Health Care Association 12

Assisted Living Federation of America 13

Appendix II 

Federal Agencies

Administering Laws

Related to Assisted

Living

14

HCFA 14

SSA 15

AOA 15

FDA 16

HUD 16

Department of Justice 16

FTC 17

Appendix III 

Recent State

Developments in

Assisted Living Policy

and Regulation

18

Appendix IV 

Selected Current

Research and Other

Efforts

25

Completed Studies and Reports 25

Ongoing Research and Other Efforts 30

Selected Bibliography 35

Page 10 GAO/HEHS-97-93 Assisted Living Quality Issues
Contents

Abbreviations

AAHSA American Association of Homes and Services for the Aging

AARP American Association of Retired Persons

ACF alternative care facility

ADL activities of daily living

AHCA American Health Care Association

ALF assisted living facility

ALFA Assisted Living Federation of America

AOA Administration on Aging

ASPE Assistant Secretary for Planning and Evaluation

FDA Food and Drug Administration

FHA Federal Housing Administration

FTC Federal Trade Commission

HCBS Home and Community-Based Services

HCFA Health Care Financing Administration

HHS Department of Health and Human Services

HUD Department of Housing and Urban Development

IOM Institute of Medicine

SSA Social Security Administration

SSI Supplemental Security Income

Page 11 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix I 

Selected Assisted Living Definitions

U.S. Health Care

Financing

Administration

HCFA has suggested the following assisted living definition for states to use

with Medicaid home and community-based waivers (section 1915(c) of the

Social Security Act), although the states may make changes to this

definition in their waiver submission:

“Assisted living may be defined as services such as homemaker, chore, attendant care,

companion services, medication oversight (to the extent permitted under State law), and

therapeutic social and recreational programming, provided in a licensed community care

facility, in conjunction with residing in the facility. This includes 24-hour on-site response

staff to meet scheduled or unpredictable needs and to provide supervision of safety and

security. Other individuals or agencies may also furnish care directly, or under

arrangement with the community care facility, but the care provided by these other entities

supplements that provided by the community care facility and does not supplant it.

“Care is furnished to individuals who reside in their own living units (which may include

dually occupied units when both occupants consent to the arrangement) which may or may

not include kitchenette and/or living rooms as well as bedrooms. Living units may be

locked at the discretion of the client except when a physician or mental health professional

has certified in writing the client is sufficiently cognitively impaired as to be a danger to

self or others if given the opportunity to lock the door. (This requirement does not apply

where it conflicts with the fire code.) Each living unit is separate and distinct from each

other. The facility must have a central dining room, living room or parlor, and common

activity center(s) (which may also serve as living or dining rooms). Routines of care

provision and service delivery must be client-driven to the maximum extent possible.

Assisted living services may also include home health care, physical therapy, occupational

therapy, speech therapy, medication administration, intermittent skilled nursing services,

and transportation specified in the plan of care.”

American Association

of Homes and

Services for the Aging

“Assisted living is a program that provides and/or arranges for the provision of daily meals,

personal and other supportive services, health care, and 24-hour oversight to persons

residing in a group residential facility who need assistance with activities of daily living and

instrumental activities of daily living. It is characterized by a philosophy of service

provision that is consumer driven, flexible, individualized, and maximizes consumer

independence, choice, privacy, and dignity.”

American Health Care

Association

“An assisted living setting is (1) a residential setting that provides or coordinates personal

care services, 24-hour supervision and assistance (scheduled and unscheduled), activities,

and health-related services; (2) designed to minimize the need to move; (3) designed to

accommodate the customer’s changing needs and preferences; (4) designed to maximize

Page 12 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix I 

Selected Assisted Living Definitions

individuals’ dignity, autonomy, privacy, and independence; and (5) designed to encourage

family and community involvement.”

Assisted Living

Federation of America

“Assisted living is a special combination of housing, personalized supportive services and

health care designed to respond to the individual needs of those who need help with

activities of daily living but do not need the skilled medical care provided in a nursing

home. Assisted living care promotes maximum independence and dignity for each resident

and encourages the involvement of a resident’s family, neighbors, and friends.”

Page 13 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix II 

Federal Agencies Administering Laws

Related to Assisted Living

For the most part, the states implement licensure and regulatory programs

for assisted living in accordance with local needs and regulations.

However, a number of federal laws affect consumer protection and quality

of care issues in assisted living. Agencies administering these laws include

the Health Care Financing Administration (HCFA), Social Security

Administration (SSA), Administration on Aging (AOA), Food and Drug

Administration (FDA), Department of Housing and Urban Development

(HUD), Department of Justice, and Federal Trade Commission (FTC).

HCFA Medicaid reimbursement for the direct care services component of

assisted living, such as personal care, nursing services, and medication

administration, may be available under Medicaid state plans or section

1915(c) waivers. But these payments do not cover room and board.13 Some

states have been pursuing assisted living as a substitute for nursing home

care, particularly in their Medicaid waiver programs. Currently, 12 states

specifically provide assisted living for the elderly under a Medicaid waiver.

Several others provide assisted living services under the waiver using

different terms such as adult congregate living facilities, adult residential

care homes, domiciliary care homes, supported living, and others.

Under a Medicaid waiver, HCFA requires state assurances that providers

meet state standards for licensure or certification. In their application,

states must cite applicable state codes and regulations for each service

provided. If states require providers to meet standards other than, or in

addition to, licensure or certification requirements, a copy of those

standards and requirements must be included with the waiver application.

Furthermore, states have to provide assurances to HCFA, as part of their

waiver applications, that necessary safeguards have been put in place to

protect residents’ health and welfare. HCFA regional office staff conduct

periodic, on-site waiver program reviews to ensure that states are

implementing their waiver programs in accordance with Medicaid

statutory and regulatory requirements as agreed to in their approved

waiver requests. HCFA’s policy is to conduct these reviews at least once in

the first 3 years of the state’s waiver and once every 5 years thereafter.

Medicare, on the other hand, does not reimburse for assisted living. If

Medicare-reimbursed home health care or other services are provided to

residents of assisted living facilities (ALF), HCFA has jurisdiction for

13In assisted living or board and care settings, the room and board portion may be paid by a

combination of individual resident payments, Supplemental Security Income (SSI), and optional state

payments.

Page 14 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix II 

Federal Agencies Administering Laws

Related to Assisted Living

oversight of these services only and not other services that may be

furnished in the assisted living setting.

SSA SSI payments, combined with an individual’s income and optional state

supplements to SSI, are a means of funding board and care and other

community residential care facilities for low-income elderly and disabled

persons. Some states combine SSI, which covers the cost of room and

board, with Medicaid payments for the health and personal care

component to create a means for low-income persons to be able to afford

assisted living.

The Congress established a federal role in the regulation of board and care

facilities in 1976 with the passage of the Keys Amendment to the Social

Security Act.14 The Keys Amendment requires states to establish, maintain,

and ensure enforcement of standards for any category of institutions,

foster homes, or group living arrangements in which a significant number

of SSI recipients reside or are likely to reside. These standards must cover

such matters as admission policies, safety, sanitation, and protection of

civil rights. States are required to report deficient facilities to SSA. If the

facilities are found deficient, the agency can reduce the SSI benefits of any

recipient living in such homes.15

AOA AOA’s role with respect to assisted living is exerted primarily through

funding the state-run, long-term care ombudsman program. State

ombudsmen (1) investigate and resolve nursing home residents’

complaints, (2) train and supervise ombudsmen volunteers, and (3) collect

information to advise policymakers of needed changes in laws and

regulations. The ombudsman program initially covered only residents of

nursing homes. Eventually, it was expanded to include residents of board

and care homes and similar facilities such as assisted living. States have

discretion in determining priorities for their ombudsmen’s efforts, and

state activity with respect to board and care and assisted living varies. To

obtain a better understanding of states’ efforts in this area, AOA is now

completing a compilation of fiscal year 1995 data from state ombudsmen

programs detailing their efforts with respect to board and care facilities.

14Effective March 31, 1995, responsibility for the Keys Amendment was transferred from the

Department of Health and Human Services (HHS) to the independent SSA as required by statute.

15HHS was reluctant to do so because officials believed that the sanctions penalized the SSI recipients

and not the facility. See Board and Care: Insufficient Assurances That Residents’ Needs Are Identified

and Met (GAO/HRD-89-50, Feb. 10, 1989).

Page 15 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix II 

Federal Agencies Administering Laws

Related to Assisted Living

FDA FDA’s primary jurisdiction over assisted living concerns drug safety. The

Prescription Drug Marketing Act of 1987 governs the wholesale

distribution of drugs. To the extent that an ALF receives and distributes

drugs, it may be engaged in the wholesale distribution of them, and the

provider would fall under applicable FDA rules. According to a recent study

conducted for the American Association of Retired Persons (AARP), state

and local pharmacy boards also interpret FDA guidelines so as to limit the

role of assisted living providers in receiving and storing drugs for

residents.16 As a result, many state licensure regulations may limit the

assistance providers can give with residents’ medications.

HUD HUD provides funding to expand the supply of housing with supportive

services for elderly persons. Capital advances are available to finance

construction and rehabilitation of housing for low-income elderly persons.

The recipient of the funding is responsible for arranging the provision and

funding of supportive services appropriate to the assessed needs of the

residents. Rental assistance may be provided to eligible, low-income

elderly residents. In addition, the Federal Housing Administration, a part

of HUD, provides mortgage insurance to facilitate the development and

refinancing of nursing homes, intermediate care facilities, board and care

homes, and ALFs. HUD indicates that to be eligible for the program, board

and care homes and ALFs must (1) have five or more bedroom

accommodations or units and (2) be licensed or certified by the

appropriate state or local agency.

Department of Justice The Department of Justice has responsibility for enforcing two laws that

may affect assisted living. First, the Disability Rights Section of Justice

protects the rights of persons with disabilities under the Americans With

Disabilities Act. Among other things, the act prohibits discrimination on

the basis of disability in places of public accommodation and establishes

architectural accessibility requirements for new construction and

alterations of commercial facilities. Second, under authority of the Civil

Rights of Institutionalized Persons Act, the Special Litigation Section of

Justice is responsible for protecting the constitutional and federal

statutory rights of persons confined in certain institutions owned or

operated by state or local governments, which may include ALFs.

According to a Justice official, neither section currently has any cases

involving residents in ALFs.

16Kane and Wilson, Assisted Living in the United States.

Page 16 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix II 

Federal Agencies Administering Laws

Related to Assisted Living

FTC The Federal Trade Commission Act prohibits unfair or deceptive acts or

practices in or affecting commerce. FTC applies this prohibition to

misleading advertisements for health care services. FTC considers

advertisements or promotions to be deceptive if (1) they contain a

representation or omission of fact that is likely to mislead consumers

acting reasonably under the circumstances and (2) the representation or

omission is likely to affect a consumer’s choice or use of a product or

service. In addition, an advertiser must be able to substantiate any

objective claim in an advertisement and must have this substantiation

before the ad is run. For health-care-related services, FTC generally

requires that claims be substantiated by scientific tests. The act’s

provisions would be relevant to ALFs to the extent that their marketing

claims are consistent with the services they provide. According to an FTC

official, its Service Industry Practices Section has not handled any cases

specifically on assisted living.

Page 17 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

Alabama Yes Current state regulations license

three assisted living categories

based on the number of residents

served. The Department of Health

held two meetings on assisted

living to obtain suggestions for

revisions. The state Health

Coordinating Council is reviewing

assisted living.

Alaska Yes Statute passed in 1994.

Regulations were effective in 1995.

Services are reimbursed through a

Medicaid Home and

Community-Based Services

(HCBS) waiver.

Arizona No Reimbursed as a Medicaid service

through the Arizona Long Term

Care Systems’ managed care

program (1115 waiver). In 1996,

legislation expanded the pilot

program statewide.

Arkansas No Licenses residential care facilities.

No assisted living activity.

California No A work group was formed in 1996

to conduct a study of state

approaches to assisted living, and

the state’s budget bill directed the

Department of Health to submit a

report and recommendations in

January 1997. Currently licenses

residential care facilities for the

elderly.

Colorado No Licenses personal care boarding

homes, and Medicaid

reimbursement is available through

an HCBS waiver.

Connecticut Yes Regulations were effective in

December 1994. Licensure

process implemented. Four

facilities have been licensed.

(continued)

Page 18 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

Delaware No Task force is developing

regulations that are expected to be

issued in 1997. Legislation seeking

Medicaid funding will be filed as

part of the Division of Services for

Aging and Adults With Physical

Disabilities’ budget.

Florida Yes Regulations issued in 1992.

Legislative amendments were

passed and new regulations issued

in 1996. An HCBS waiver has been

approved to serve 225 Medicaid

recipients.

Georgia No Licenses personal care homes.

Medicaid reimbursement is

available through an HCBS waiver.

No assisted living activity.

Hawaii Yes Legislation authorizing

development of assisted living

regulations was passed in 1995.

Draft regulations were issued in

November 1996 for comment.

Idaho No A concept paper was developed

by the Residential Care Council in

1995. Legislation passed revising

residential care facility rules.

Further action on assisted living is

being reviewed by the state

agencies.

Illinois No The Illinois affiliate of the American

Association of Homes and Services

for the Aging created a task force

to support assisted living. The task

force developed assisted living

legislation that is expected to be

filed in the 1997 session. The

legislature approved a series of

demonstration projects related to

assisted living but did not create a

separate licensure category.

Indiana No The Aging Department is heading a

task force that may file legislation

for consideration in 1997.

(continued)

Page 19 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

Iowa Yes A law was passed that creates a

certification process for assisted

living. Draft rules will be prepared

in 1996. Implementation is planned

for 1997.

Kansas Yes Law was passed in 1995 defining

assisted living. Regulations will be

finalized in the fall of 1996.

Kentucky Yes Legislation was passed in 1996.

Louisiana Yes Draft regulations have been

developed.

Maine Yes Legislation revising the state’s

assisted living program was

passed in 1996, and regulations

are being drafted. The legislation

provides for several levels of

assisted living and varying

licensing based on the level of

service provided. Services are

reimbursed through Medicaid.

Maryland Yes Legislation was passed in 1996

based on a task force report.

Massachusetts Yes Legislation creating an assisted

living certification process was

signed in January 1995.

Regulations have been issued.

Certification process created for

settings meeting specified criteria.

Financing for services (Medicaid)

and housing (SSI) is available for

purpose built and conventional

elderly housing projects. Sixty

projects and 3,700 units have been

certified.

Michigan No In 1995, the Department on Aging

led a work group that reviewed

current trends in assisted living but

decided to maintain existing

regulations. In 1996, a new group

will be created to reevaluate the

issue.

Minnesota No Assisted living has been

implemented as a Medicaid service.

Mississippi No No activity.

(continued)

Page 20 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

Missouri No No activity to create assisted living

has been identified. Medicaid

reimbursement is available for

residential care facilities.

Montana No Assisted living is covered in

personal care facilities as a

Medicaid waiver service.

Nebraska No The Department of Health has

formed a task force to revise

existing residential care facility

rules and perhaps create a new

licensure category with a higher

level of care. Managed Long Term

Care Work Group will also consider

where assisted living fits in the

continuum of care.

Nevada No Licenses residential care facilities

for groups. No assisted living

activity. Limited Medicaid

reimbursement is available.

New Hampshire No No activity to create assisted living

has been identified, although state

officials view their existing

regulations as equivalent to

assisted living.

New Jersey Yes Regulations creating a new

licensure category were

implemented. Ten facilities have

been licensed, 140 have been

approved but not yet licensed, and

35 applications are pending.

Regulations developing an assisted

living model in elderly housing

have been issued.

New Mexico No Assisted living has been added as

a Medicaid waiver service.

New York No Contracts with 63 projects and

3,500 units have been approved. A

request for proposal for 700 units in

New York City was issued, and final

selections have been made. A task

force has been created to consider

a separate licensure category for

assisted living.

(continued)

Page 21 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

North Carolina Yes Legislation was passed in 1995

that defines assisted living

residence as a category of adult

care homes. Regulations revising

the adult care home model and

registration requirements for

assisted living in elderly housing

sites have been issued. Personal

care is covered in adult care

homes through Medicaid.

North Dakota No Assisted living services are funded

through the state’s Medicaid

waivers and two state-funded

service programs.

Ohio No Legislation was passed in 1993.

Regulations implementing the bill

were postponed pending review by

a special committee in 1994.

Legislation passed in 1995

repealed the statute and authorized

funding for 1,300 assisted living

Medicaid waiver slots effective July

1996. New rules governing

residential care facilities were

effective in September 1996, and a

decision on submitting the

Medicaid waiver has been delayed

pending a study of the entire

Medicaid program.

Oklahoma No A task force has been created to

develop assisted living

recommendations. A draft bill has

been circulated and is being

revised by the task force.

Oregon Yes Program rules operational. Supply

continues to expand, with 69

facilities and 3,200 units licensed.

Thirty projects are under

construction or in the planning

stages.

Pennsylvania No Personal care homes are licensed.

The licensing agency and interest

groups are considering renaming

the category as assisted living,

while other groups support creating

a separate category with a higher

level of care.

(continued)

Page 22 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

Rhode Island Yes About 45 residential care facilities

and ALFs are licensed. New

buildings offer units with private

bath.

South Carolina No A task force has been formed. A

report is expected in the fall of

1996.

South Dakota Yes Assisted living category exists in

statute. Limited services allowed.

Tennessee Yes Legislation creating an ALF

category was passed in 1996. A

task force has been appointed to

draft regulations.

Texas No Assisted living has been added to

the Medicaid HCBS waiver. A task

force was formed to develop

regulations creating a new

licensure category. The report

made changes in the existing

category but did not develop

assisted living recommendations.

Utah Yes Program rules on ALF licensure

were approved in 1995. Rules

governing the buildings were also

approved by a state board. An

amendment to the Medicaid HCBS

waiver to cover assisted living is

being considered.

Vermont No The 1997 budget allows transfer of

the Medicaid equivalent of 46 beds

for community care and assisted

living. The Department of Aging

and Disabilities has formed a work

group to draft the assisted living

component of the program. In

addition, the Department has

implemented an enhanced

residential care facilities program

that provides $50/day for 70

residents who meet the nursing

home level of care criteria.

Virginia Yes Regulations allowing assisted living

services in adult care residences

were effective in February 1996.

(continued)

Page 23 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix III 

Recent State Developments in Assisted

Living Policy and Regulation

State

Legislation and/or

regulations

creating a

specific category

for assisted livinga

Status of state activity in

assisted living

Washington No Rules covering assisted living as a

Medicaid waiver service were

issued June 1996. The 1995

budget transferred funding for

1,600 nursing facility beds to

assisted living and community

options. Medicaid has contracted

with 70 facilities and serves 750

waiver clients.

West Virginia No Licenses personal care homes. No

assisted living activity.

Wisconsin Yes Legislation certifying assisted living

facilities and providing funding for

a Medicaid HCBS program was

passed in 1995 as part of the

governor’s budget. Regulations

have been finalized. A Medicaid

waiver is anticipated.

Wyoming Yes Regulations upgrading board and

care rules were issued. Board and

care facilities can also be licensed

as ALFs in order to provide limited

skilled nursing services and

medication administration.

aMay include existing or draft regulations creating a licensure category or certification process for

assisted living. In addition, some states that do not have a specific licensure category or

certification process do, however, cover assisted living in their Medicaid program.

Source: Robert L. Mollica and Kimberly Irvin Snow, State Assisted Living Policy: 1996 (Portland,

Me.: National Academy for State Health Policy, Nov. 1996). We did not independently verify the

accuracy of this information, nor did we update it to reflect the current time period.

Page 24 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

The following two sections are an overview of recently completed studies

and reports on assisted living and a summary of ongoing research and

other efforts in this area.

Completed Studies

and Reports

1. State Assisted Living Policy: 1996, Robert L. Mollica and Kimberly Irvin

Snow (Portland, Me.: National Academy for State Health Policy,

Nov. 1996).

This study reports on a 1996 survey of states conducted as part of the

ongoing National Study of Assisted Living for the Frail Elderly, sponsored

by the HHS Assistant Secretary for Planning and Evaluation (ASPE). The

report analyzes, tabulates, and summarizes statutes, regulations, task force

reports, and interviews with state officials in each of the 50 states on

assisted living. This report profiles the 50 states’ statutes, regulations, draft

legislation, draft regulations, and processes for designing state policy as

well as the particulars of their models for assisted living. The purpose of

the overall HHS/ASPE study is to identify the place of assisted living in

long-term care and its potential for meeting the needs of a growing

number of elderly persons with disabilities.

The report finds that regulations that ensure the safety and quality of care

in assisted living are limited. Regulations in most states set the parameters

for assisted living, but owners and operators define the practice. ALFs in

states that emphasize the consumer try to foster independence, dignity,

privacy, and autonomy. Thirty-one states have or are implementing a state

policy on assisted living. Fifteen states have existing licensure regulations

for assisted living, and 9 are developing them. Twenty-two states

reimburse or purchase assisted living under Medicaid; 6 states provide

Medicaid payments in board and care settings. Thirteen states are studying

recommendations for the development of assisted living rules.

2. Assisted Living: Reconceptualizing Regulation to Meet Consumers’

Needs and Preferences, Keren Brown Wilson (Washington, D.C.:

AARP/Public Policy Institute, 1996).

This report provides a framework for an outcome-oriented regulatory

process for assisted living that emphasizes quality while facilitating the

goals of maximizing consumers’ independence, dignity, privacy, and

autonomy. The paper states that no such framework currently exists. The

author includes an examination of the effect of regulatory processes on

the development and delivery of assisted living. As presented, the

Page 25 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

framework reflects the discussions of a panel of 43 participants convened

on October 13-14, 1995. The paper offers specific examples of how the

framework might be operationalized as a system but does not offer a

model for state legal or regulatory systems.

The framework defines assisted living as a residential setting that provides

or coordinates safe and flexible personal care services with 24-hour

supervision and assistance in an environment that minimizes the tenants’

need for movement within or from the setting. Additionally, the

framework specifies that ALFs have an organizational mission, service

programs, and a physical environment that encourage family and

community involvement. The framework also proposes quality standards

in two components: (1) minimum licensing standards based on

quantifiable or process-oriented requirements and (2) outcome goals for

11 areas of tenant autonomy, service provision, and the residential

character of the setting. These quality standards are to be implemented

through a monitoring process and a performance improvement process.

3. Best at Home: Assuring Quality Long-Term Care in Home and

Community-Based Settings, ed. Jill C. Feasley (Washington, D.C.: National

Academy Press, 1996).

The purpose of this study was to examine how consumers and their

families, payers, and providers try to ensure high-quality care in home and

community-based settings. The report sets out the conceptual framework

and provisional design for a much larger Institute of Medicine (IOM) study

that was to be conducted under the auspices of the 1992 reauthorization of

the Older Americans Act and the Secretary of HHS. The 1992

reauthorization of the Older Americans Act called for an IOM study of the

quality of board and care facilities. This broader IOM effort was intended to

result in standards for board and care. However, this larger effort was not

conducted because funds were not made available.

For the planning study, the authors reviewed the relevant literature;

offered presentations at an invitational workshop attended by 27

consumers, researchers, and state officials; and engaged in the

deliberations of a planning committee for the two studies. The members

included experts in long-term care policy, regulation and accreditation,

advocacy, and quality assurance and improvement in home and residential

care services.

Page 26 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

As a study plan, the report identified six major questions related to home

and community-based residential care settings: (1) What key features

define the services and their consumers? (2) What are the type, frequency,

and severity of quality problems? (3) What factors enhance or impede the

provision of quality care? (4) How can the appropriateness, effectiveness,

and adequacy of current and proposed quality assessment and

improvement strategies for services be optimized? (5) What role should

consumers and their informal caregivers play in defining and evaluating

quality? (6) Are national minimum standards or model standards needed

to ensure the quality of care? The authors further suggest an exploration of

the appropriate roles of federal, state, and local governments as well as

private accreditation organizations in monitoring compliance with any

such standards.

4. Analysis of the Effect of Regulation on the Quality of Care in Board and

Care Homes, Research Triangle Institute and Brown University (Research

Triangle Park, N.C.: Research Triangle Institute, Dec. 1995).

Sponsored by HHS, this study was initiated to help document the

characteristics of board and care homes and their residents and assess the

quality of care delivered to residents. The database included data gathered

in 386 licensed and 126 unlicensed board and care facilities with 512

operators, 1,138 staff, and 3,257 residents in a purposive sample of 10

states. The study authors made site visits to all the board and care homes

and interviewed operators, staff, and residents. They developed

(1) measures for both the quality of care and quality of life in the homes

and (2) indicators to describe the residents and facilities that were used in

the analysis of the effect of regulation and licensure on quality.

The study found that increasing disability among residents makes safety

and quality assurance issues especially pressing. The large number of

unlicensed homes and the presence of unlicensed ALFs raise questions

about the regulatory role of the states with regard to places that provide

essentially the same type of care and services as licensed board and care

homes. The mix of physically frail elderly, cognitively impaired elderly,

and residents with mental illness and developmental disabilities was

challenging. The average resident was older and more disabled than a

decade ago; most board and care homes were small, but the majority of

residents were in homes with more than 50 beds. In the 10 study states, an

estimated 12 percent of homes were unlicensed, and 27 percent of the

beds were in unlicensed homes. Licensure alone was effective in ensuring

that homes provided care above a threshold of minimum performance.

Page 27 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

Regulatory systems reduced the prevalence of unlicensed homes;

effectively promoted safety, quality of life, and quality of care; and did not

produce an excessively institutional model of care. The authors suggest

that the federal government can support state and provider efforts to

improve the quality of care by developing and disseminating information

about changes in the long-term-care sector.

5. Serving People With Dementia: Regulating Assisted Living and

Residential Care Settings, Joan Hyde (Wellesley, Mass.: Hearthstone Press,

1995).

The purpose of this policy research project was to describe the needs of

people with Alzheimer’s and related disorders in assisted living settings in

the United States and to recommend “Alzheimer’s friendly” regulatory

language to support those needs. To meet this objective, the author

developed and applied a systematic checklist to a content analysis of a

sample of existing and proposed assisted living and residential care laws

and regulations in 10 states. The checklist was revised following

interviews with a sample of providers, regulators, consumers, and

researchers in the 10 states. Draft model regulatory language and

principles were developed and distributed to 52 experts, whose responses

were incorporated into the report.

This study found that there was little consistency in residential care

regulations from one state to the next, making comparisons difficult.

There were major differences in the degree to which regulations reflected

an understanding of the large percentage of assisted living residents who

suffer from cognitive impairment; most of these states’ assisted living

regulations did not address important issues related to serving Alzheimer’s

residents. The most serious regulatory obstacles to serving people with

dementia were restrictive admission and discharge criteria, along with

lack of recognition of the family role in decision-making. Lack of financial

support for low-income elderly was another key problem among the

states. The author found a heavy emphasis on a medical model of care,

evident in staffing requirements and in assessment and service planning.

States with commissions or advisory boards that dealt with dementia

issues tended to be more “Alzheimer’s friendly” in practice even if the

regulations, as strictly read, did not support serving this population.

6. Assisted Living in the United States: A New Paradigm for Residential

Care for Frail Older Persons? Rosalie A. Kane and Keren Brown Wilson

(Washington, D.C.: AARP/Public Policy Institute, 1993).

Page 28 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

The purpose of the study was to provide a snapshot review of recent

developments in assisted living in the United States. The authors surveyed

63 assisted living programs in 21 states as well as all licensed assisted

living programs in Oregon. In addition, they interviewed for perspective

and experience a purposive sample of 16 developers plus 50 key

informants selected to include trade, professional, and consumer

representatives, researchers, and federal officials. Finally, the authors

performed case studies of the development of assisted living in 14 states.

The study found that despite some central trends, variation in assisted

living was substantial across the states. Settings varied in their features, as

did the levels of disability served. The average length of stay for all

programs was 26 months. Similarly variable were patterns of internal

staffing and the use of consultants and home health contractors, although

the trend was toward flexible use of labor and minimizing job

differentiation. According to the study authors, state policy and regulation

have shaped, and have often hindered, the evolution of assisted living and

its characteristics, which are often market driven. Assisted living can

effectively serve low-income people while holding promise as a

cost-effective form of care. The study suggested ways in which state

policies could enhance the growth and viability of moderate-cost and

small facilities. The authors also recommended that quality outcomes,

including resident satisfaction, be emphasized over prescriptive standards

and that environmental enhancements, such as private units, be mandated

under assisted living licensure. Otherwise, developers tend not to provide

them for low-income consumers.

7. Policy Synthesis on Assisted Living for the Frail Elderly, Lewin-VHI,

Inc. (Washington, D.C.: HHS, ASPE, Dec. 16, 1992).

The purpose of this study was to provide a broad overview of issues

related to assisted living for the frail elderly. The authors reviewed and

analyzed more than 350 published and unpublished books, reports, and

documents and conducted extensive telephone interviews with

policymakers, association representatives, academicians, and researchers.

The study describes assisted living programs in 10 states (Florida, Maine,

Maryland, New York, and Oregon among them) and reviews such concerns

as regulation, funding, and evaluation results. Several chapters discuss

further research questions to pursue. These were partially suggested by 40

policymakers, researchers, and practitioners who used the study as a

discussion springboard in a November 20, 1992, meeting on assisted living

Page 29 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

for the frail elderly sponsored jointly by ASPE and the National Academy

for State Health Policy.

This study reported that existing research found that frail elderly people

expressed greater satisfaction with assisted living settings than with

nursing home care. Assisted living has the unique opportunity to structure

a regulatory approach with hindsight from nursing home regulation. Many

experts believe that a “hallmark” of assisted living regulation should be

flexibility. With regard to the financing of ALFs, three trends were noted.

First, resources have shifted over time from producing new housing units

to supporting rental assistance in existing housing. Second, new programs

emphasized a combination of “bricks and mortar” financing and services

financing. Third, the Congress tended to encourage partnerships in

housing development between the federal government and the states,

partnerships in which the federal government contributes policy direction

and the states develop solutions that fit their individual needs.

Ongoing Research and

Other Efforts

1. National Study of Assisted Living for the Frail Elderly, sponsored by the

HHS ASPE, the Administration on Aging, and the National Institute on Aging.

A contract for a comprehensive 2-year study was awarded to Research

Triangle Institute. The project team includes representatives of The Lewin

Group, the University of Minnesota National Long-Term Care Resource

Center, and the National Academy for State Health Policy.

The purpose of the study is to identify where assisted living fits into the

spectrum of long-term-care facilities and its potential for meeting the

needs of the growing number of elderly persons with disabilities. The

study aims to identify trends, barriers, and factors in supply and demand;

determine how well supply meets the central tenets of assisted living; and

examine selected outcomes, including resident satisfaction, autonomy,

affordability, and potential to provide nursing-home-level care. The overall

study design includes interviews with lenders, developers, owners,

consultants, and managers. The project team has conducted annual

surveys of all state licensing and housing agencies involved in assisted

living, as well as Medicaid agencies that fund assisted living. The design

also includes a telephone survey of a national probability sample of 2,500

facilities. Furthermore, the design calls for interviews with operators,

staff, and residents at on-site visits to 690 facilities. Finally, focus groups

consisting of current and former residents and their family members will

help the study authors define quality as consumers of ALFs see it.

Page 30 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

2. Assisted Living Quality Initiative: Building a Structure That Promotes

Quality, a working document of the Assisted Living Quality Coalition

consisting of the Alzheimer’s Association, the American Association of

Homes and Services for the Aging, AARP, and the Assisted Living Facilities

Association of America,17 August 1, 1996.

The purpose of the paper is to provide a possible blueprint for change in

the way quality is promoted in long-term care and to present a

multifaceted approach to assuring quality and promoting improvement in

assisted living. The paper presents guidelines to states for establishing

minimum standards for providers of assisted living. The coalition’s quality

initiative includes recommendations for state licensure review; daily

quality monitoring for constant improvement in clinical, functional, and

quality-of-life outcomes; and state enforcement and penalties when there

is an identified threat to health, safety, or quality.

The paper describes an outcomes-oriented system that would require

institutionalizing (1) the development of guidelines for state standards and

for quality indicators by credible independent bodies; (2) the conducting

of research on the validation of quality indicators, risk adjustments, and

predictors of quality outcomes; (3) the analysis of data by a sophisticated

research organization that can develop normative guidelines for

interpreting the results and the reporting of those data and results; and

(4) consulting services for improving performance, together with the

involvement of a state agency and possible roles for an independent,

private body to act as a state agent in monitoring data collection and

quality improvement.

3. The Quality Initiative for Assisted Living, draft plan (Washington, D.C.:

American Health Care Association, June 26, 1996).

The draft plan suggests a framework for a quality-measurement system

that would focus on service outcomes and customer satisfaction, defines

assisted living services, and outlines a national service philosophy based

on independence and choice for residents of all incomes. The plan has

three major components. First are expectations for facilities that are broad

statements in the areas of services, environment, customer protection, and

management responsibilities. Second are service outcome indicators.

Examples provided in the document are those for nursing home settings.

Service outcome indicators specifically for assisted living are currently

17The Assisted Living Facilities Association of America recently changed its name to the Assisted

Living Federation of America.

Page 31 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

being developed. Third are customer satisfaction indicators developed by

the University of Wisconsin and the Gallup Organization. These were

created to measure and evaluate the degree to which the assisted living

residents are satisfied with the setting and the quality of services.

4. Resident Centered Care in Assisted Living, Donna L. Yee, Ph.D., and

John A. Capitman, Ph.D. (Waltham, Mass.: Brandeis University).

This exploratory study describes residents’ experiences in assisted living

programs. The study of 20 assisted living programs and 400 residents

focuses on three dimensions: (1) personal choice and lifestyle, (2) getting

appropriate and timely care, and (3) community participation

opportunities. Reports of study findings have been submitted for

publication. The study raises several serious issues and concerns about

assisted living. In general, findings indicate much variation among

programs in service packages offered, resident characteristics, care needs

of residents, staffing, and involvement of the sponsor. Levels of service

reported by residents did not generally coincide with individual needs and

preferences, particularly in helping residents get needed care and in

offering opportunities for participation. In addition, the study finds that

(1) resident needs assessments are often prepared by the marketing

person and filed away without periodic reassessment of resident needs;

(2) resident care is rarely coordinated by personnel in different parts of

the facility; (3) adequacy of staffing levels are difficult to determine since

the resident’s perception of purchasing a relatively protected environment

can easily conflict with the provider’s definition of what state regulations

“allow”them to do (that is, the extent of skilled or personal care they can

provide) and the provider’s commitment to shareholder expectations;

(4) documentation rarely reflects how the array of services provided meets

specific needs of individual residents; and (5) the touted new paradigm of

provider and resident risk-sharing (that is, negotiating a resident’s desire

for an independent lifestyle with his or her need for care) may result in

neglectful care more than in new ways to support independent living for

persons needing long-term care.

5. Comparative Study of Alternative Alzheimer’s Care Facilities in

Minnesota, Leslie Grant, Ph.D. (Minneapolis, Minn.: University of

Minnesota).

This study, funded by the Alzheimer’s Association, looks at alternative

care facilities (ACF)—including ALFs, board and care homes, group homes,

and other residential care alternatives to nursing homes—to evaluate how

Page 32 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

responsive ACFs are to the needs of persons with Alzheimer’s and their

family caregivers. The study (currently in its first year) involves a 3-year,

phased research design. Phase one is a telephone survey to collect

descriptive information about the characteristics of 300 to 400 ACFs in

Minnesota. Phase two involves field research conducted in 120 ACFs

serving persons with Alzheimer’s disease or related dementia to develop a

classification system (ACF typology) based on dementia-specific

environmental, staffing, and program features. Phase three is a

longitudinal analysis of outcomes in 96 persons with Alzheimer’s disease

and 96 of their family caregivers over a 6-month period in 24 ACFs stratified

by the ACF typology. A comparative analysis of outcomes has been

completed (1) across the ACF typology and (2) between ACF and nursing

home residents with dementia (using data from an ongoing study of

dementia care in Minnesota nursing homes).

6. Effectiveness of Assisted Living in Oregon, Rosalie Kane (Minneapolis,

Minn.: University of Minnesota).

The study, funded by the Robert Wood Johnson Foundation, evaluates the

Oregon Assisted Living Program to assess who is being served, with what

effects, and at what costs. The research has three components: (1) a

longitudinal study of 600 assisted living tenants and 600 nursing home

residents, with participants being interviewed three times over the course

of a year; (2) a case study to determine the perceptions of key informants

regarding assisted living and ways it should be defined; also included are

interviews with assisted living program administrators to assess such

issues as staffing patterns, admission procedures, and discharge criteria;

and (3) a macro study of trends in the supply, price, and occupancy

rates/caseloads of long-term care (assisted living programs, nursing

homes, residential care facilities, adult foster homes, and home care) in

Oregon since the inception of assisted living. The study will be completed

in spring 1998.

7. Annual Report of State Ombudsmen Activity, U.S. Administration on

Aging (Washington, D.C.: forthcoming).

AOA is required to prepare and submit an annual report to the Congress on

state long-term-care ombudsman program activity. The current report,

expected to be issued by early April 1997, contains detailed caseload data

and is broken out to include activity related to board and care settings in

addition to nursing homes. This report will present detailed fiscal year

1995 ombudsman program activity from 29 states related to board and

Page 33 GAO/HEHS-97-93 Assisted Living Quality Issues
Appendix IV 

Selected Current Research and Other

Efforts

care facilities. (Next year’s report will cover program activity from all

states.) Data will include (1) the number of board and care or similar

facilities in the state covered by the ombudsman mandate, (2) the number

of facility visits, (3) the number and type of complaints and their

disposition by type of facility, and (4) the type of complainant by type of

facility.

Page 34 GAO/HEHS-97-93 Assisted Living Quality Issues
Selected Bibliography

Approaches to Quality Under Home and Community-Based Services

Waivers. HCFA, Medicaid Bureau. Washington, D.C.: November 1993.

Assisted Living Quality Initiative: Building A Structure That Promotes

Quality, a Working Document. Assisted Living Quality Coalition. August 1,

1996.

Blanchette, Katherine. New Directions for State Long-Term Care Systems

Volume III: Supportive Housing. #9701. Washington, D.C.: AARP/Public

Policy Institute, February 1997.

Buck, John Richard. “Assisted Living: An Uncharted Course.” Bifocal,

Newsletter of the Commission on Legal Problems of the Elderly, American

Bar Association, Vol. 16, No. 4 (winter 1996), pp. 1-7.

“Can Your Loved Ones Avoid a Nursing Home: The Promise and Pitfalls of

Assisted Living.” Consumer Reports (Oct. 1995), pp. 656-59.

Clemmer, Elizabeth. “Assisted Living and Its Implications for Long-Term

Care.” Issue Brief, No. 20. Washington, D.C.: AARP/Public Policy Institute,

February 1995.

Coleman, Nancy, and Joan Fairbanks. “Licensing New Board and Care for

the Elderly.” St. Louis University Public Law Review, Vol. X, No. 2 (1991),

pp. 521-30.

Hawes, Catherine, and others. A Description of Board and Care Facilities,

Operators, and Residents. Report prepared for HHS/ASPE under contract no.

DHHS-500-89-0031. Research Triangle Park, N.C.: Research Triangle

Institute and Brown University, December 1995.

_____. The Regulation of Board and Care Homes: Results of a Survey in

the 50 States and the District of Columbia. Research Triangle Park, N.C.:

Research Triangle Institute for AARP, 1993.

Hyde, Joan, Ph.D. Serving People With Dementia: Regulating Assisted

Living and Residential Care Settings. Wellesley, Mass.: Hearthstone Press,

November 1995.

Best at Home: Assuring Quality Long-Term Care in Home and

Community-Based Settings. IOM. Washington, D.C.: National Academy

Press, 1996.

Page 35 GAO/HEHS-97-93 Assisted Living Quality Issues
Selected Bibliography

Kane, Rosalie A., and Keren Brown Wilson. Assisted Living in the United

States: A New Paradigm for Residential Care for Frail Older Persons?

Washington, D.C.: AARP/Public Policy Institute, 1993.

Manard, Barbara, Ph.D., and others. Policy Synthesis on Assisted Living

for the Frail Elderly. Report prepared for HHS/ASPE under contract no.

DHHS-100-89-0032. Lewin-VHI, December 16, 1992.

Mollica, Robert L., and Kimberly Irvin Snow. State Assisted Living Policy:

1996. Report prepared for HHS/ASPE under contract no. DHHS-100-94-0024,

with additional support from the National Institute on Aging,

Administration on Aging, and the Alzheimer’s Association. Portland, Me.:

National Academy for State Health Policy, November 1996.

National Study of Assisted Living for the Frail Elderly: Literature Review

Update. Lewin-VHI, under subcontract to Research Triangle Institute.

Report prepared for HHS/ASPE under contract no. DHHS-100-94-0024, with

additional support from the National Institute on Aging, Administration on

Aging, and the Alzheimer’s Association. Research Triangle Park, N.C.:

February 1996.

Phillips, Charles, and others. Report on the Effects of Regulation on the

Quality of Care: Analysis of the Effect of Regulation on the Quality of Care

in Board and Care Homes. Report prepared for HHS/ASPE under contract no.

DHHS-500-89-0031, Research Triangle Institute and Brown University,

Research Triangle Park, N.C.: December 1995.

“Quality of Board and Care Homes Serving Low-Income Elderly: Structural

and Public Policy Correlates.” Journal of Applied Gerontology, Vol. 12, No.

2 (June 1993), pp. 225-45.

Siemon, Dorothy, Stephanie Edelstein, and Zita Dresner. “Consumer

Advocacy in Assisted Living.” Clearinghouse Review (Oct. 1996), pp.

579-88.

U.S. General Accounting Office. Board and Care Homes: Elderly at Risk

From Mishandled Medications (GAO/HRD-92-45, Feb. 7, 1992).

_____. Board and Care: Insufficient Assurances That Residents’ Needs Are

Identified and Met (GAO/HRD-89-50, Feb. 10, 1989).

Page 36 GAO/HEHS-97-93 Assisted Living Quality Issues
Selected Bibliography

Wilson, Keren Brown. Assisted Living: Reconceptualizing Regulation to

Meet Consumers’ Needs and Preferences. Washington, D.C.: AARP/Public

Policy Institute, 1996.

(108314) Page 37 GAO/HEHS-97-93 Assisted Living Quality Issues
Ordering Information

The first copy of each GAO report and testimony is free.

Additional copies are $2 each. Orders should be sent to the

following address, accompanied by a check or money order

made out to the Superintendent of Documents, when

necessary. VISA and MasterCard credit cards are accepted, also.

Orders for 100 or more copies to be mailed to a single address

are discounted 25 percent.

Orders by mail:

U.S. General Accounting Office

P.O. Box 6015

Gaithersburg, MD 20884-6015

or visit:

Room 1100

700 4th St. NW (corner of 4th and G Sts. NW)

U.S. General Accounting Office

Washington, DC

Orders may also be placed by calling (202) 512-6000 

or by using fax number (301) 258-4066, or TDD (301) 413-0006.

Each day, GAO issues a list of newly available reports and

testimony. To receive facsimile copies of the daily list or any

list from the past 30 days, please call (202) 512-6000 using a

touchtone phone. A recorded menu will provide information on

how to obtain these lists.

For information on how to access GAO reports on the INTERNET,

send an e-mail message with "info" in the body to:

info@www.gao.gov

or visit GAO’s World Wide Web Home Page at:

http://www.gao.gov

PRINTED ON RECYCLED PAPER
United States

General Accounting Office

Washington, D.C. 20548-0001

Official Business

Penalty for Private Use $300

Address Correction Requested

Bulk Rate

Postage & Fees Paid

GAO

Permit No. G100