Long-Term Care: Consumer Protection and Quality-of-Care Issues in
Assisted Living (Letter Report, 05/15/97, GAO/HEHS-97-93).

Pursuant to congressional request, GAO reviewed assisted living
facilities (ALF), focusing on: (1) responsibilities of federal and state
governments and ALFs in ensuring quality and protecting consumers living
in ALFs; and (2) issues that may require further research.

GAO noted that: (1) a number of federal agencies have some jurisdiction
over consumer protection and quality of care in ALFs; (2) however,
states have the primary responsibility for developing standards and
monitoring care provided in ALFs; (3) a recent compilation of state
assisted living activities shows that state approaches to oversight
vary; (4) 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,
and others are in the process of developing them; (5) 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; (6) 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; (7) not only do state approaches to regulation of ALFs
vary, the level and intensity of services provided in ALFs may also
vary; (8) according to some experts, consumers can find themselves in a
facility unable to meet their expected needs; (9) 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; (10) but one recent
limited study found that contracts varied in detail and, in some cases,
were vague and confusing; (11) 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;
(12) overall, little in known about the accuracy and adequacy of
information furnished to individuals and their families who are
considering assisted living; (13) many of these concerns about consumer
protection and quality of care in assisted living have been identified
by state governments, providers, and consumer advocates; (14) although
several research efforts are under way currently, further research may
be needed to determine the: (a) nature and extent of problems related to
consumer protection and quality of care that may be occurring; (b)
effectiveness and adequacy of existing models of oversight and
regulation; and (c) accuracy and adequacy of information provided to co*

--------------------------- Indexing Terms -----------------------------

 REPORTNUM:  HEHS-97-93
     TITLE:  Long-Term Care: Consumer Protection and Quality-of-Care 
             Issues in Assisted Living
      DATE:  05/15/97
   SUBJECT:  Consumer protection
             Extended care facilities
             Information disclosure
             Quality assurance
             State programs
             Elderly persons
             Long-term care
IDENTIFIER:  Medicaid Program
             Oregon
             Florida
             Connecticut
             Supplemental Security Income Program
             SSI
             
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Cover
================================================================ COVER


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

Assisted Living Quality Issues

(108314)


Abbreviations
=============================================================== ABBREV

  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

Letter
=============================================================== LETTER


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. 


   RESULTS IN BRIEF
------------------------------------------------------------ Letter :1

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
------------------------------------------------------------ Letter :2

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 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
as\6

  -- a single or widowed female,

  -- average age of about 84, and

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

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


--------------------
\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. 

\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. 


   STATES PRIMARILY RESPONSIBLE
   FOR OVERSIGHT OF ASSISTED
   LIVING
------------------------------------------------------------ Letter :3

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 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 developments in assisted living policy and
regulation as compiled by the National Academy for State Health
Policy.)


--------------------
\9 Robert L.  Mollica and Kimberly Irvin Snow, State Assisted Living
Policy:  1996 (Portland, Me.:  National Academy for State Health
Policy, Nov.  1996). 

\10 For 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). 


   FACILITIES' RESPONSIBILITIES
   OUTLINED IN RESIDENT CONTRACTS
------------------------------------------------------------ Letter :4

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 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. 


--------------------
\11 John 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. 


   ISSUES NEEDING FURTHER RESEARCH
------------------------------------------------------------ Letter :5

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. 


--------------------
\12 The 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). 


   AGENCY COMMENTS
------------------------------------------------------------ Letter :6

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. 


---------------------------------------------------------- Letter :6.1

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 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


SELECTED ASSISTED LIVING
DEFINITIONS
=========================================================== Appendix I


   U.S.  HEALTH CARE FINANCING
   ADMINISTRATION
--------------------------------------------------------- Appendix I:1

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
--------------------------------------------------------- Appendix I:2

     "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
--------------------------------------------------------- Appendix I:3

     "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 individuals' dignity, autonomy, privacy, and
     independence; and (5) designed to encourage family and community
     involvement."


   ASSISTED LIVING FEDERATION OF
   AMERICA
--------------------------------------------------------- Appendix I:4

     "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."


FEDERAL AGENCIES ADMINISTERING
LAWS RELATED TO ASSISTED LIVING
========================================================== Appendix II

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
-------------------------------------------------------- Appendix II:1

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 oversight of these services only and not other
services that may be furnished in the assisted living setting. 


--------------------
\13 In 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. 


   SSA
-------------------------------------------------------- Appendix II:2

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


--------------------
\14 Effective 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. 

\15 HHS 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). 


   AOA
-------------------------------------------------------- Appendix II:3

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. 


   FDA
-------------------------------------------------------- Appendix II:4

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. 


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


   HUD
-------------------------------------------------------- Appendix II:5

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
-------------------------------------------------------- Appendix II:6

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. 


   FTC
-------------------------------------------------------- Appendix II:7

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. 


RECENT STATE DEVELOPMENTS IN
ASSISTED LIVING POLICY AND
REGULATION
========================================================= Appendix III

                  Legislation
                  and/or
                  regulations
                  creating a
                  specific
                  category for
                  assisted      Status of state activity in assisted
State             living\a      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.

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.

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.

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.

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.

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.

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.
----------------------------------------------------------------------
\a May 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. 


SELECTED CURRENT RESEARCH AND
OTHER EFFORTS
========================================================== Appendix IV

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
-------------------------------------------------------- Appendix IV:1

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 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. 

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.  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). 

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 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
-------------------------------------------------------- Appendix IV:2

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. 

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 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 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 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. 


--------------------
\17 The Assisted Living Facilities Association of America recently
changed its name to the Assisted Living Federation of America. 


SELECTED BIBLIOGRAPHY
=========================================================== Appendix 0

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Blanchette, Katherine.  New Directions for State Long-Term Care
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Buck, John Richard.  "Assisted Living:  An Uncharted Course."
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"Can Your Loved Ones Avoid a Nursing Home:  The Promise and Pitfalls
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Clemmer, Elizabeth.  "Assisted Living and Its Implications for
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Coleman, Nancy, and Joan Fairbanks.  "Licensing New Board and Care
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Hawes, Catherine, and others.  A Description of Board and Care
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_____.  The Regulation of Board and Care Homes:  Results of a Survey
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Hyde, Joan, Ph.D.  Serving People With Dementia:  Regulating Assisted
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Best at Home:  Assuring Quality Long-Term Care in Home and
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Kane, Rosalie A., and Keren Brown Wilson.  Assisted Living in the
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Manard, Barbara, Ph.D., and others.  Policy Synthesis on Assisted
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Mollica, Robert L., and Kimberly Irvin Snow.  State Assisted Living
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Phillips, Charles, and others.  Report on the Effects of Regulation
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Quality of Care in Board and Care Homes.  Report prepared for
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"Quality of Board and Care Homes Serving Low-Income Elderly: 
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Siemon, Dorothy, Stephanie Edelstein, and Zita Dresner.  "Consumer
Advocacy in Assisted Living." Clearinghouse Review (Oct.  1996), pp. 
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U.S.  General Accounting Office.  Board and Care Homes:  Elderly at
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_____.  Board and Care:  Insufficient Assurances That Residents'
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Wilson, Keren Brown.  Assisted Living:  Reconceptualizing Regulation
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AARP/Public Policy Institute, 1996. 


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