oversight

Long-Term Care: Consumer Protection and Quality-of-Care Issues in Assisted Living

Published by the Government Accountability Office on 1997-05-15.

Below is a raw (and likely hideous) rendition of the original report. (PDF)

                 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
      United States
GAO   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




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


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



                        A number of federal agencies bear some responsibility for aspects of
States Primarily        consumer protection and quality of care in ALFs. (See app. II for a listing of
Responsible for         federal agencies administering laws related to assisted living.) However,
Oversight of Assisted   even where the federal government does play a role, most oversight
                        functions rest with the states. For example, the Social Security
Living                  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
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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).
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).



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.)


                       Given the variation in what is labeled assisted living and the variety of
Facilities’            ways states regulate these settings, consumers often must rely on
Responsibilities       information supplied to them by the provider to determine whether an
Outlined in Resident   assisted living setting is appropriate for their needs. Although marketing
                       materials may contain information about facility standards and services,
Contracts              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

                       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.



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


                   Many of these consumer protection and quality-of-care concerns are
Issues Needing     shared by state governments, advocates, and provider organizations, and
Further Research   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.


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

                   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).



                   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                                                                                              12
                         U.S. Health Care Financing Administration                                      12
Selected Assisted        American Association of Homes and Services for the Aging                       12
Living Definitions       American Health Care Association                                               12
                         Assisted Living Federation of America                                          13

Appendix II                                                                                             14
                         HCFA                                                                           14
Federal Agencies         SSA                                                                            15
Administering Laws       AOA                                                                            15
                         FDA                                                                            16
Related to Assisted      HUD                                                                            16
Living                   Department of Justice                                                          16
                         FTC                                                                            17

Appendix III                                                                                            18

Recent State
Developments in
Assisted Living Policy
and Regulation
Appendix IV                                                                                             25
                         Completed Studies and Reports                                                  25
Selected Current         Ongoing Research and Other Efforts                                             30
Research and Other
Efforts
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


                         HCFA has suggested the following assisted living definition for states to use
U.S. Health Care         with Medicaid home and community-based waivers (section 1915(c) of the
Financing                Social Security Act), although the states may make changes to this
Administration           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.”




                         “Assisted living is a program that provides and/or arranges for the provision of daily meals,
American Association     personal and other supportive services, health care, and 24-hour oversight to persons
of Homes and             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
Services for the Aging   provision that is consumer driven, flexible, individualized, and maximizes consumer
                         independence, choice, privacy, and dignity.”




                         “An assisted living setting is (1) a residential setting that provides or coordinates personal
American Health Care     care services, 24-hour supervision and assistance (scheduled and unscheduled), activities,
Association              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 is a special combination of housing, personalized supportive services and
Assisted Living         health care designed to respond to the individual needs of those who need help with
Federation of America   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).


              Medicaid reimbursement for the direct care services component of
HCFA          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


              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.



              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.


      SSI payments, combined with an individual’s income and optional state
SSA   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’s role with respect to assisted living is exerted primarily through
AOA   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.


      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).



      Page 15                                           GAO/HEHS-97-93 Assisted Living Quality Issues
                        Appendix II
                        Federal Agencies Administering Laws
                        Related to Assisted Living




                        FDA’s primary jurisdiction over assisted living concerns drug safety. The
FDA                     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  provides funding to expand the supply of housing with supportive
HUD                     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.


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


                        16
                          Kane 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




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


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




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




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




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




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




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




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

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.




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.


                    1. State Assisted Living Policy: 1996, Robert L. Mollica and Kimberly Irvin
Completed Studies   Snow (Portland, Me.: National Academy for State Health Policy,
and Reports         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.




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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.



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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).



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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




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                       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.


                       1. National Study of Assisted Living for the Frail Elderly, sponsored by the
Ongoing Research and   HHS ASPE, the Administration on Aging, and the National Institute on Aging.
Other Efforts          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.




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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

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



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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



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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
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