Background

Over the last decade, assisted living has emerged as an increasingly  popular long-term care option. Within the continuum of long-term care,  assisted living facilities typically provide a level of care between  independent living and nursing homes for persons who need assistance  with one or more ADLs, such as bathing or dressing. However, states vary  in the term they use for assisted living—it appears in the licensing  regulations of most states but some refer instead to personal care homes,  boarding homes, residential care facilities, adult homes, and homes for the  aged—and in the characteristics of the facilities encompassed by the term  used. A 2002 study of assisted living policies in each of the 50 states and  the District of Columbia showed that states differ in the facilities included  under their assisted living regulations based on facility size, services  provided, and whether or not the facilities offer specified types of  accommodations such as private apartments. In addition, the study found  that many states incorporate a distinctive philosophy of care in their  regulation of assisted living facilities to emphasize residents’ choice,  independence, dignity, and privacy. Specifically, 28 states have included an  assisted living philosophy statement in their regulations, but specifics of  the statements vary.
Unlike nursing homes, which are subject to extensive federal regulations,  assisted living facilities generally have considerable flexibility to  determine the resident populations that they serve and the services they  provide. As a result, assisted living facilities vary widely on both of these  dimensions. Nevertheless, most facilities provide housing, meals,  housekeeping, laundry, supervision, and assistance with some ADLs and  other needs, such as medication administration. The majority of assisted  living residents are between the ages of 75 and 85 and more than two  thirds are females. About a quarter of assisted living residents need help  with three or more ADLs. Eighty-six percent of residents require or accept  help with medication. Facilities differ in the extent to which they admit  residents with certain needs (including residents who meet the criteria for  admission to nursing homes) and whether they retain residents as their  needs change. For example, a 2000 study found that less than half of the  assisted living facilities are willing to admit or retain persons who require  assistance to transfer from bed to chair or wheelchair. This study also  found that less than half of the facilities would admit or retain residents  with moderate to severe cognitive problems.
The type, size, and cost of assisted living facilities also vary widely. Some  facilities are freestanding while others are located on a campus that  contains multiple units offering different levels of care (such as nursing  homes and independent living residences). Those built in the 1980s  generally provide semiprivate accommodation while the newer facilities  typically offer private apartments. Facilities range in size from a few beds  to over a thousand. The average facility in a nationwide study had 53  beds. Many facilities are independently owned while others belong to  regional or national chain corporations. Assisted living fees vary widely  across and within states depending on the facility’s size, service, and  location. For example, the average monthly base rate ranged from $1,020  in Mississippi to $4,429 in Washington, D.C., according to a recent industry  survey. Residents often pay additional fees for special care units and  other services, such as medication administration and transportation. Two  thirds of assisted living residents pay out-of-pocket, but many states use  Medicaid and other federal and state funds to help finance such care. As  of October 2002, 41 states used Medicaid reimbursement to cover assisted  living or related services for more than 102,000 people.
The federal government exercises minimal oversight over assisted living,  leaving to the states primary responsibility for ensuring that assisted living  residents have adequate protections. Some states fulfill this responsibility  by establishing licensing standards, inspection procedures, and  enforcement measures. Nevertheless, the regulatory approaches to  assisted living adopted by states vary widely in scope and structure. For  example, some states delineate the services that assisted living facilities  may or may not provide—sometimes with multiple tiers of licenses for  more specialized care—while others grant broad flexibility to providers to  meet the individual needs of residents and their families. All states have  long-term care ombudsmen with potential jurisdiction over assisted living  facilities. Among other things, ombudsmen may provide services to  protect assisted living residents and resolve complaints that they file.  Ombudsmen may monitor quality of care, educate residents about their  rights, and mediate disputes between residents and providers.
Prior GAO reports have addressed a number of consumer protection and  quality of care issues that remain at the forefront of public concerns about  assisted living. These reports raised questions about the adequacy of  information available to prospective consumers to help them choose a  facility that meets their needs. The 1999 report also discussed states’  varying approaches to oversight and the type and frequency of consumer  protection and quality of care problems that state agencies identified.

	State Efforts to Enhance Consumer Information on Facility Options

Given the wide diversity among assisted living facilities in the services  they offer and the populations they are prepared to serve, prospective  assisted living residents can have difficulty finding an appropriate—let  alone the most appropriate—facility to meet their individual needs.  Initiatives such as the Florida “Find-a-Facility” Web site and the Texas  standardized disclosure statement help consumers make better choices by  providing them the information they need in an easier-to-absorb format.

		Consumers Often Lack Key Information to Make Appropriate Choices

Available studies and interviews with our experts indicate that consumers  choosing among their assisted living options often lack the information  they need to make a fully informed selection. The limitations in the  information currently provided to consumers relate to both its substantive  content and mode of presentation. To make appropriate choices among  the wide range of facility options available in the market, consumers need  to learn about facility services, costs, and policies that impact residents.  Moreover, they need this information to be not only complete and  accurate, but also presented in a timely way and in a form that they can  understand. When consumers do not receive adequate information before  selecting an assisted living facility, they are less likely to find a facility that  can satisfactorily address their personal care needs.
In making selection decisions, consumers rely on facility information that  they receive in various ways, including marketing brochures, facility tours,  and interviews with providers. Consumers also rely on the advice of  family, friends, or health care professionals. Our 1999 report stated that  marketing materials, contracts, and other written materials that facilities  give consumers were often vague, incomplete, or misleading. Specifically,  the report found that facilities’ written materials often did not contain key  information, such as a description of services not covered or available at  the facility, the staff’s qualifications and training, circumstances under  which costs might change, assistance residents would receive with  medication administration, facility practices in assessing needs, or criteria  for discharging residents if their health changes. Subsequent studies,  including the 2003 Workgroup report, as well as experts that we  interviewed, indicate that consumers continue to have difficulty obtaining  full disclosure of the information they need. In response to this  deficiency, 18 states have instituted information disclosure policies, such  as requirements on the use of uniform disclosure statements or the  contents of written materials provided to prospective residents.
Our expert interviews and the studies we reviewed identified information  about staffing levels and qualifications, costs and potential cost increases,  and facility policies regarding discharge criteria as critical to informed  decision making. Consumers need to know, for example, whether a facility  has staff to provide full 24-hour service to address recurring care needs,  such as assistance administering medications, as distinct from a facility  whose overnight staff is only available to deal with emergency situations.  While some facilities reportedly disclose only aggregate staffing data, the  most important information for consumers concerns the number of staff  directly involved in providing care to residents. Expert interviews and  reviewed studies also indicated that consumers do not always receive  information clearly explaining the circumstances under which resident  costs can increase. Similarly, according to a consumer advocate  organization, providers do not always inform consumers about the  circumstances under which they could be involuntarily discharged from  their facility, even when state regulations dictate that residents must leave  if their needs reach a certain level.
The experts we interviewed underscored the importance of conveying  critical information about assisted living choices in a way that consumers  can readily absorb. The experts explained that prospective residents and  family members often have difficulty grasping the information presented  to them, especially when they have to make decisions quickly to address a  crisis situation. Under these circumstances, consumers often do not know  what questions to ask or how to assess and compare the responses that  they receive in order to identify the facility that can best meet their  individual needs.
When consumers do not get complete and accurate information on the  assisted living alternatives available to them, in a form that they can  understand, they run the risk of choosing a facility that cannot adequately  meet their personal care requirements. A likely consequence is that they  will have to move again within a short time. Both consumers and providers  benefit if they can minimize this risk by ensuring that the consumer has,  and can use, the critical information relevant to making an informed  choice among different facilities.

		Florida Sponsors an Internet-based Facility Locator

In the summer of 2003, Florida’s Department of Elder Affairs (DOEA)  launched its Affordable Assisted Living Web site to enhance public access  to information on assisted living. One of its features is called “Find-a- Facility,” a search tool that allows anyone with internet access to identify  those Florida assisted living facilities that match the preferences set by the  user. The available options include geographic location, price range,  housing configurations (such as private apartments), whether the facility  accepts residents with government subsidies or certain disabilities, and  clinical and social services offered. (For examples of the Web site pages,  see app. II.) Once the user selects his preferences among the available  options, the site generates a list of licensed facilities, with those most  closely matching the chosen preferences ranked highest. For each of these  facilities, the user can print out a one-page description that includes the  facility’s contact information, number of beds, specific government  subsidy programs it participates in, any specialized care licenses, and all of  its entries on the list of selection options.
Development of the Web site occurred through a collaboration of public  and private entities. It began under Florida’s Coming Home Program,  sponsored by the Robert Wood Johnson Foundation. DOEA established a  committee comprised of representatives of providers, consumers, and  regulators. They found a need for a comprehensive information  clearinghouse to inform both providers and consumers about assisted  living options and the multiple long-term care and housing assistance  programs designed to make these options more widely available. The  “Find-a-Facility” feature developed from discussions with social workers  and case managers who had helped elderly clients find appropriate  assisted living residences. They underlined the need to identify the  facilities that met their clients’ needs and preferences and that the clients  could afford, often with the assistance of government subsidies. Many had  been relying on placement agencies, which would only list facilities that  had paid the agency a fee. Larger, more expensive, private pay facilities  were more likely to sign on with the placement agencies, meaning that  prospective residents were less likely to find out about smaller, less  expensive, or subsidized facilities in their area.
Several state agencies then joined together in the technical development  of the Web site. Specifically, DOEA, the Florida Agency for Health Care  Administration, and the Florida Housing Financing Corporation  contributed staff time and services, in addition to state funding of about  $29,000. The state tested the prototype site for several months with  different consumer groups, such as Alzheimer caregivers and visitors to  neighborhood senior centers. Based on the feedback received, state  officials made further refinements in the wording of entries, their  organization, and the instructions provided to users. DOEA subsequently  developed a Spanish-language version of the site, which came into  operation in April 2004.
To promote the Web site, the state informed providers and potential  residents of assisted living facilities about the site and how to use it. DOEA  took care to contact professionals who typically help place residents in  assisted living, distributing brochures to social workers and hospital  discharge planners as well as local area agencies on aging. Consumer  advocacy groups such as AARP and the Alzheimer’s Association were also  encouraged to help get the word out about the Web site. Usage rates have  increased steadily, reaching about 250 visitors a day by February 2004.
DOEA also provided training to assisted living providers, to help them  enter much of the data presented on the Web site. All licensed facilities are  included in the basic database, with information on facility location,  number of beds, state licenses held, and contact information downloaded  from Agency for Health Care Administration files. However, providers  voluntarily enter virtually all of the descriptive information on price range,  housing configurations, populations served, and services offered. A  provider representative indicated that entering the Web site data initially  takes 10 to 15 minutes. Providers can update their information at any time.  By February 2004, approximately 40 percent of assisted living facilities had  filled in their data fields. DOEA receives about two inquiries a week from  providers asking for assistance, but in general the providers find this  process relatively easy. Initial skepticism among some providers has  diminished as they hear from providers already in the system and they  recognize the inherent advantage of free advertising. This is especially  beneficial for smaller, independent facilities that cannot match the  commercial advertising of the national and regional chains.
A state administrator noted that maintenance of the Web site requires  some continuing effort. With substantial turnover among facility providers  and professionals assisting prospective residents, outreach and training is  an ongoing process. DOEA also tries to spot-check at least some key data  elements entered into the system, even though the Web site itself  prominently displays a disclaimer that provider-entered data have not  been verified for accuracy.
No formal evaluations of the Web site have yet been undertaken, but  informal feedback has been uniformly positive according to both provider  and consumer representatives, as well as the state official responsible for  its operation. Consumers, and those acting on their behalf, are finding that  the Web site has several distinct advantages over previously available  information sources. Most importantly, it provides a way to efficiently  narrow their search. They can quickly identify the universe of facilities  within a given area and determine which offer the services they are  looking for at a price they can afford. Current information about  participation in government subsidy programs is especially valuable for  many prospective residents of limited means. In addition, because “Find-a- Facility” is on the internet, out-of-state family members can actively  participate in the process of locating an appropriate facility. Similarly, the  Web site makes it much easier for professionals assisting elderly clients,  such as social workers and hospital discharge planners, to determine the  full list of available placement options.

		Texas Requires Facilities to Distribute Standardized Disclosure Statements

In 1999, Texas enacted a law requiring assisted living facilities to provide  each prospective resident a consumer disclosure statement that follows a  standard format approved by the Department of Human Services. Its  purpose is to enable consumers to better compare facilities by describing  their policies and services in terms of uniform categories. However, its  effectiveness depends not only on its content but also on how and when  facilities distribute it to consumers.
This five-page checklist form addresses many of the topics identified in  our expert interviews as critical for consumers choosing among  alternative assisted living facilities. It describes the services and amenities  provided to all residents, as well as those offered at additional cost. (See  app. III.) The form also lists circumstances that could lead a resident to be  discharged from the facility and the training received by staff. It includes a  chart showing the number and type of staff on duty for each daily shift,  which is also posted in public view at the facility.
While a number of other states have developed similar forms—particularly  for specialized dementia units—Texas is notable for having been among  the first to develop a standardized disclosure statement for all assisted  living facilities, and to include detailed information on staffing levels. The  standardized response categories specified by the form make the  furnished information consistent across facilities, allowing consumers to  make comparisons more readily among them. The checklist format means  that consumers see what services the facility does not provide as well as  those it does. There is one version of the form for assisted living facilities  in general and another, covering many of the same topics, adapted  specifically for units specializing in dementia care. Neither form, though,  has been translated into any languages other than English.
State officials described the process of developing these forms as  proactive on their part—rather than in response to external complaints— and relatively uncontroversial. The disclosure statement for specialized  dementia units emerged from a state-organized advisory committee  including provider and consumer advocates. That served as the model for  the more generic assisted living form issued by the department shortly  thereafter. Since then, according to both state officials and an official of a  state provider association, providers have accepted both forms without  complaint. State officials believe that this extensive involvement of  providers, along with consumer representatives, in the development of the  form, contributed greatly to its wide acceptance among providers as a  whole.
Providers vary considerably in the way they distribute the form. Some  send it out to people making phone inquiries, some provide it when  prospective residents or their family members visit the facility, and some  wait to distribute it when the contract is signed. Although the form states  that copies should be provided to anyone who requests information about  the facility, providers are only held accountable for ensuring that those  who ultimately become residents in their facility received the completed  form by the time they were admitted. According to the consumer  representative we interviewed, residents who obtain the disclosure  statement during the admissions process often pay little attention to it  given all the other papers they receive and sign at that time.
Once instituted, the Texas disclosure form has imposed few burdens on  either assisted living providers or state officials. According to the provider  association official we interviewed, it takes no more than 20 to 30 minutes  to complete. The biggest challenge is remembering to revise affected  entries on the form when a facility changes its services or staffing  patterns. Such revisions happen perhaps four or five times a year, on  average. To meet regulatory requirements, providers need to document  that residents have seen the form prior to their admission. As part of their  annual inspection of licensed assisted living facilities, state inspectors can  assess whether a facility has a form ready to distribute and that current  residents received the disclosure form before signing their residence  agreement. However, the inspection process does not include an explicit  examination of the accuracy of the information provided on the form.
Available evidence suggests that the assisted living disclosure statement  provides useful information to prospective residents, though it does have  certain limitations. None of the state, provider, or consumer  representatives we spoke with knew of any formal studies conducted on  the effectiveness of the form in enhancing consumer decision making on  assisted living facilities. However, the anecdotal evidence they conveyed  was largely positive. The consumer and provider representatives we spoke  with generally thought that the form was clear and covered the major  topics that consumers need to know about. Nonetheless, the consumer  representative indicated that some residents and their families still  encountered “surprises” after the resident was admitted. These typically  involved the conditions under which residents could be discharged or  aggregate charges assessed. According to this representative, such  misunderstandings reflected, in part, the intrinsically subjective nature of  certain decisions, such as whether a facility could continue to meet the  needs of a resident whose level of disability may have increased over time.  The provider official we interviewed suggested that the form itself could  be revised to more clearly convey how increases in services used would  affect the resident’s total charges.
The Texas disclosure form addresses several challenges that consumers of  assisted living can face. The categories of information provided on the  form help to describe for consumers, who often know little about the  industry and may need to make a decision quickly, what facilities can and  cannot do for their residents. They also highlight important issues, such as  the facility’s discharge criteria, that prospective residents and their  families should pay attention to in making their selection. In addition,  having comparable information in a concise format for multiple facilities  should make it easier to identify key differences among the facilities under  consideration. However, these benefits depend on when the residents or  their representatives receive the form. If facilities do not distribute the  form to consumers until they sign a contract, it cannot help them in  deciding among available facilities.

	State Efforts to Facilitate Provider Compliance with Licensing Requirements

Assisted living providers may fall short of meeting state licensing  standards in part because they lack a full understanding of what the  standards require and how to meet them. The experience of Washington  State, which for 2 ½ years employed a staff of consultants to advise and  train assisted living providers, shows the potential benefits of licensing  assistance programs in improved provider compliance and resident  outcomes, as well as the challenge of sustaining them over time.

		Providers Are Sometimes Uncertain about Regulatory Requirements

Regulations that address consumer protection and quality of care  generally cover such areas as admission and discharge criteria, services  and level of care provided, staffing levels and staff training, safety and  health standards, and resident rights. To examine regulatory compliance,  states periodically conduct inspections of assisted living facilities. To  ensure that facilities correct their deficiencies, states may require the  facility to prepare a written plan of correction. In addition, states may  conduct reinspections and impose financial penalties, license revocations,  and criminal sanctions. Generally, when deficiencies are found, the facility  has an opportunity to correct them. However, regulatory agencies expect  providers to determine how to accomplish this, drawing on outside  technical advice, if needed, to resolve the issue. According to experts we  interviewed, state agencies face the challenge of inspecting a rapidly  increasing number of assisted living facilities with limited resources. While  national data are not available, a number of inspection reports and media  articles indicate that typical problems relate to inadequate care,  inappropriate discharges, insufficient staffing and training deficiencies,  improper drug storage or errors dispensing medications, and other safety  issues.
One way to facilitate compliance with licensing regulations is to help  providers achieve a better understanding of what the regulations actually  require. The experts that we interviewed stated that providers often  express confusion about actions they need to take to meet state policy or  regulatory requirements. They noted that providers perceive ambiguities in  regulations that can lead to inconsistent interpretations among different  facility managers as well as individual state inspectors. Moreover, the  rapid industry expansion has brought many new providers into the  assisted living industry whose administrators may not fully understand  what they need to do to meet regulatory requirements. Experts also said  that uncertainties about state requirements could have negative effects on  consumers. For example, confusion about state rules could induce some  providers to drop out of the market, which might lead to access problems  in some areas, particularly in rural communities that tend to have fewer  assisted living providers to begin with.
According to experts we interviewed, state licensing agencies or other  entities can help providers understand regulations by providing guidance  and training. Licensing assistance can take various forms, including  informal phone conversations, on-site consultation and technical advice,  or training courses. Such assistance may be especially critical for  administrators who are new or relatively inexperienced in the assisted  living industry. Even for established managers, helping them to keep their  facilities in compliance with regulatory requirements benefits consumers  by preventing potentially serious health and safety problems. While many  experts we interviewed noted the value of combining such assistance with  traditional regulatory enforcement measures, not all agreed that state  agencies should provide it. Several noted that industry associations could  also furnish this kind of support for their members. Moreover,  representatives from one advocacy organization argued that efforts by  licensing agencies to provide technical assistance to providers could draw  scarce resources away from their primary responsibility of enforcing state  licensing standards.

		Washington Employed Consultants to Assist Providers with State Licensing Requirements

Washington enacted a law in 1997 to establish a consultative approach to  help assisted living providers meet state licensing requirements. In 2000,  the state put this approach into operation with the Quality Improvement  Consultation (QIC) program, which created a staff of consultants within  the state’s Department of Social and Health Services (DSHS) to provide  training and advice to individual providers. The staff of nine regionally  based consultants conducted site visits, led training sessions, and  responded to telephone inquiries from assisted living providers throughout  the state. These activities continued for 2 ½ years until, in the midst of a  state budget crisis, the state stopped funding the program.
The QIC program came about in response to provider concerns about a  major structural reorganization in the state’s regulation of assisted living.  In 1995, the state moved licensing and oversight responsibility for assisted  living from the Department of Health to DSHS. Because DSHS also had  enforcement authority over nursing homes, providers anticipated that the  state would approach assisted living regulation as it had nursing home  oversight and lobbied for a more consultative approach. The state  legislature responded by requiring DSHS, within available funding, to  develop the QIC program. DSHS expected the program to enhance  provider and resident satisfaction, improve resident safety and quality of  care, and prevent compliance problems.
A quality improvement advisory group consisting of representatives of  providers, consumers, and the state came together to develop the QIC  program. Most of the group’s discussion revolved around the meaning of  “consultation.” Provider and consumer representatives differed on  whether providers could be required to participate in the program.  Providers insisted that the program be entirely voluntary, while some  ombudsmen believed that the providers most in need of help might be  least likely to ask for it. Provider representatives also expressed concern  about the relationship of the consultants with the DSHS inspectors who  enforced the state’s licensing regulations. In particular, they worried that  inspectors could have access to private information that providers had  shared with a consultant, leading to enforcement actions rather than  assistance. In addition, they wanted to prevent such information from  appearing in public records.
After much discussion, the group reached consensus to make the QIC  program voluntary and to define the consultants as adjuncts to, but  separate from, the licensing enforcement process. The consultants would  not forward information to inspectors unless they identified a situation  involving immediate harm to residents. In addition, information obtained  from providers would not be released publicly except in aggregated form.  The state hired nine quality improvement consultants who had extensive  education and experience in quality improvement, training, and  consultation in the assisted living industry. The consultants conducted  onsite facility visits initiated by providers in order to help them develop  and implement quality improvement plans that addressed identified needs.  They also led regional provider training and were available by telephone to  respond to provider inquiries.
Two evaluations of the QIC program indicated overall positive results in  meeting its goals. The first evaluation took place 6 months into the  program. It measured effectiveness through analysis of resident outcomes  and responses to satisfaction questionnaires completed by residents,  ombudsmen, providers, facility staff, and consultants. The second  evaluation occurred 2 years later. It assessed provider compliance with  licensing regulations and satisfaction levels among providers and  ombudsmen who participated in the onsite portion of the program.
After 6 months of operation, about 82 percent of providers voluntarily  participated in the QIC program in some way. Moreover, in both  evaluations, a large majority of participating providers expressed  satisfaction with the QIC program. Over 90 percent of those providers  indicated in the first evaluation that the program had effectively assisted  them with compliance. Although this level of satisfaction declined slightly  to about 79 percent 2 years later, providers indicated in the second  evaluation that consultation in a voluntary, mutually respectful, and  collegial manner was the program’s most beneficial component.
Assisted living residents also reported positive outcomes from the  program. In the first evaluation, 90 percent of residents expressed  satisfaction with the results of the program’s on-site visits. Among those  residents assessed by consultants on more than one visit, 86 percent  showed improvement in identified areas of concern. These areas involved  a variety of quality of care issues, including administration of medications  and ADL assistance. Similarly, with respect to safety issues, 65 percent of  the residents seen on more than one visit demonstrated improvement in  areas such as prevention of falls.
Finally, both providers and the state attributed improvements in  regulatory compliance partly to the work of the QIC program. The second  evaluation included an analysis of statewide provider compliance prior to  (1998 to 2000) and after implementation (2001 to 2002) of the QIC  program. Although there was a slight increase in the number of state  inspections conducted, the number and percentage of facilities that had  penalties imposed fell substantially. The state imposed fewer civil fines,  conditions on licenses, license revocations, and summary suspensions.  Finding fewer problems during inspections also meant that each  inspection required less time to complete and document, thereby allowing  more efficient use of inspection resources.
Despite its broad support and favorable outcomes, the QIC program ended  in July 2002. After 2 ½ years of operation, it lost its state funding and has  since remained an unfunded program. According to state officials and  consumer representatives, the program’s end was primarily due to funding  constraints. A severe state budget crisis in 2002 put significant pressure on  DSHS to cut costs while maintaining its core functions of conducting  inspection and complaint investigations. The department decided that it  needed more inspectors for this work, and that licensing assistance  through the QIC program had lower priority. However, the provider  representative emphasized that insufficient trust between providers and  the state also contributed to the program’s end. While the evaluation  results pointed to substantial success overall in building functioning  relationships, the provider representative described several incidents of  broken confidentiality between providers and consultants that tended to  undermine the providers’ willingness to participate in the program. A state  official as well as consumer and provider representatives noted that the  QIC program required collaboration and the sharing of sensitive  information. Such collaboration depended on providers and consultants  developing and sustaining trust among themselves, as well as between  consultants and other state officials, such as inspectors and ombudsmen.
Washington’s QIC program illustrates both the challenges and potential  benefits of state efforts to provide licensing assistance to assisted living  providers. A large number of providers chose to take advantage of the  consultative services and training offered by the program. Moreover, the  documented improvements in resident outcomes and in provider  compliance with regulations demonstrate the impact that programs of this  sort can have. However, the staff resources needed to provide this level of  assistance make these programs highly vulnerable in times of budgetary  constraint.

	State Efforts to Strengthen Residents’ Complaint Procedures

Some assisted living residents have difficulty pursuing complaints with  their providers, particularly in cases involving an involuntary discharge.  Georgia has established a spectrum of procedural remedies specifically for  assisted living residents that appear to strengthen their bargaining position  vis-a-vis providers. Massachusetts created a separate ombudsman staff  dedicated to assisted living residents. As a result, these staff members  have become expert in dealing with the particular problems of assisted  living residents.

		Residents Often Have Difficulty Raising Complaints about Their Facilities’ Services and Policies

Concerns about problems in assisted living facilities reinforce the need to  ensure that consumers have adequate mechanisms to raise complaints  about the care they receive in these facilities. For the most part, these  mechanisms fall into two broad categories:  Internal procedures, which specify how residents may lodge complaints  with the facility’s management and how management may respond.
External procedures, which designate an entity outside of the facility to  hear resident complaints and decide on an appropriate resolution. The  outside entity may be a state agency or an independent third party. Such  procedures are most commonly applied to major disputes, such as  involuntary discharges.
A national study found that some states require assisted living facilities to  establish internal complaint procedures, some offer residents a venue for  external appeals, and some offer both. In addition, it noted that some  states take measures to ensure that assisted living residents are aware of  these rights, for example by requiring that facilities prominently post  appropriate telephone numbers and the list of resident rights in that state.  However, the national study also found that in 2000 over half of the states  had no requirements that assisted living facilities establish procedures for  residents to voice complaints or appeal provider decisions that adversely  affect them.
Regardless of their rights to file complaints either internally or externally,  many residents may hesitate to do so for fear of retribution. According to  the experts we interviewed and studies of ombudsmen programs, many  assisted living residents do not want to risk alienating their providers.  Even when state agencies permit the residents to file complaints  anonymously, they may find it difficult to maintain their anonymity,  especially in smaller facilities.
Among the avenues for residents to seek redress of their complaints is  through the long-term care ombudsmen program in each state. The Older  Americans Act directs ombudsmen to represent the interests of residents  of long-term care facilities, including nursing homes and assisted living  facilities. The act authorizes the ombudsmen to serve as advocates to  protect the health, safety, welfare, and rights of residents of long-term care  facilities. One of the main responsibilities of ombudsmen is to investigate  and resolve complaints. Ombudsmen involvement in assisted living varies  considerably depending on state policies and the resources available to  address the myriad complaints that they receive from all types of long- term care facilities. However, experts we interviewed noted that most  ombudsmen focus the bulk of their limited resources on nursing homes. In  fiscal year 2002, ombudsmen received four times as many complaints  against nursing homes as assisted living facilities.
Ombudsmen can help overcome the factors that may inhibit assisted living  residents from filing complaints. During scheduled visits to assisted living  facilities, ombudsmen have the opportunity to educate residents on their  right to file complaints and encourage them to do so. In addition, while the  ombudsmen are on-site they can receive such complaints discretely.
However, financial constraints may limit the frequency with which  ombudsmen meet with assisted living residents.

		Georgia Strengthens Procedural Remedies for Assisted Living Residents

In 1994, Georgia strengthened procedural remedies available to residents  in assisted living facilities by enacting the Remedies for Residents of  Personal Care Homes Act. These remedies provide additional consumer  protections beyond the investigation of complaints by its licensing agency,  the Office of Regulatory Services (ORS) within the Department of Human  Resources. The state gave assisted living residents specific procedural  rights to have their complaints heard and redressed. The remedies include  the right to an internal complaint procedure, an administrative hearing,  and specified actions in court. According to consumer advocates, the 1994  law has enhanced the ability of assisted living residents to resolve disputes  informally with assisted living providers.
At the time Georgia passed this legislation, assisted living facilities had  recently come under heightened public scrutiny. Consumer advocates and  the media had raised concerns about the lack of adequate oversight, as  evidenced by facilities that maintained extremely poor sanitary conditions  or that admitted residents who required far greater care than the facility  could provide. In response, the state legislature sought to provide  assisted living residents with additional consumer protections by creating  procedural remedies specifically for them. In its legislative findings, the  state legislature recognized that residents often lacked the ability to assert  their rights and stated that full consumer protection required that  residents have a means of recourse when their rights were denied.  According to the state official, the legislature modeled the act’s procedural  remedies after remedy options given to nursing home residents through  both state and federal law.
The remedies provided in the 1994 legislation include an internal  complaint procedure and an administrative hearing. Residents may  submit an oral or written complaint to a facility administrator, who must  either resolve the complaint or respond in writing within 5 business days.  If residents do not find the response satisfactory, they may submit an oral  or written complaint to the state long-term care ombudsman. Residents  also have the right to request an administrative hearing under the Georgia  Administrative Procedure Act. They are not required to use any other  legal remedies before requesting such a hearing. The Office of State  Administrative Hearings (OSAH) must conduct the hearing within 45 days  of receiving the request, although state officials may refer the request to an  ombudsman for informal resolution pending the hearing. If the resident  alleges that the provider acted in retaliation for the resident exercising his  or her rights, OSAH must conduct the hearing within 15 days of receiving  the request. The facility cannot transfer a resident before he has exhausted  all appeal rights unless he develops a serious medical condition or his  behavior or condition threatens other residents.
The act also gives residents access to different types of court proceedings.  A resident may file a lawsuit seeking compensation from an assisted living  facility. The resident need not exhaust any of the other legal remedies  before bringing such a suit. This remedy includes a provision designed to  protect residents from retaliation by a provider. If the provider attempts to  remove the resident involuntarily from the facility within 6 months after  the resident exercises one of the available remedies, the court presumes  retaliation in an action by the resident making that claim unless the  provider presents “clear and convincing evidence” to the contrary.  Residents may also file a lawsuit requesting that the court order a facility  to refrain from violating the rights of a resident. Finally, residents may file  a lawsuit for ‘mandamus’—a court order to ORS to comply with laws  relating to an assisted living facility or its residents.
These procedural remedies appear to have their greatest effect in  strengthening the position of residents during informal resolution of  disputes. The legal aid representatives we interviewed noted that they  resolve most issues between assisted living residents and providers  informally. Advocates for residents said that these procedural remedies  give the advocates added leverage as they negotiate with providers.  However, advocates also stated that they rarely take the next step of  actually filing for administrative hearings or court proceedings, in part  because legal aid cases generally do not reach that step and also because  they believe that the substantive rights of assisted living residents in  Georgia are not strong. For example, a resident objecting to an involuntary  discharge is unlikely to prevail in an administrative hearing because  providers exercise broad discretion in deciding when they can no longer  properly care for a resident. However, by requesting a hearing, residents  can postpone the date by which they must move out, thereby gaining more  time in which to find a suitable place to relocate. Moreover, according to  one legal aid attorney, providers often prefer to resolve a dispute  informally rather than take their chances with an administrative hearing,  because providers typically have little experience with hearings and prefer  to limit their costs for legal representation.
Strengthening Georgia’s procedural remedies for assisted living residents  required action by the state legislature, but once approved, the procedures  have imposed minimal costs to the state. An agency to deal with a wide  range of state administrative issues already existed, and with few hearings  involving assisted living residents actually conducted, these cases  represent a small portion of OSAH’s operating expenses. Similarly, the  state’s long-standing advocates for assisted living residents—long-term  care ombudsmen and legal aid lawyers—have served to inform both  providers and residents about these legal remedies while carrying out their  normal functions. In fact, providers and residents may remain unaware of  their existence, until the advocates have reason to bring these remedies to  their attention in the course of resolving disputes.

		Massachusetts Established an Ombudsman Program for Assisted Living

In 1994, Massachusetts passed an assisted living statute that established a  statewide assisted living ombudsman program. The program is a key  element of the statute, which created a certification system for assisted  living separate from the state’s nursing home regulatory and licensure  system. According to the state official we interviewed, the primary  purpose of this ombudsman program is to maintain the quality of life,  health, safety, welfare, and rights of assisted living residents by  designating ombudsman staff specifically for assisted living. It provides a  means for assisted living residents and family members to file and resolve  complaints relating to the quality of services and to residents’ quality of  life. However, the program’s exclusive reliance on state funding, under  circumstances of state budgetary constraint, has resulted in limited staff  resources available to perform these tasks.
Assisted living ombudsmen serve primarily as mediators and advocates. As  mediators, they receive, investigate, and attempt to resolve problems or  conflicts that occur between a provider and residents. They act as  advocates for residents by referring their cases to the assisted living  certification office or elder protective services, when warranted. In  addition, the ombudsmen respond to inquiries by consumers considering  assisted living as a long-term care option. They also respond to providers  requesting advice. To accomplish these tasks, the ombudsmen make site  visits to assisted living facilities, typically in the context of a serious  complaint allegation and sometimes together with certification staff.
The organizational placement of the ombudsman program within the  state’s Executive Office of Elder Affairs (EOEA) is designed to balance  program autonomy and coordination with related programs. EOEA  oversees both the assisted living ombudsman and certification programs.  According to the state official, staff members from both programs  coordinate activities, communicate often, and refer cases to each other.  This working relationship has helped give the ombudsman more leverage  when dealing with providers. However, representatives for both the state  and assisted living providers agree that the ombudsman program should  remain separate organizationally from the certification program because  they perform different functions. Previously, when the staff of the two  programs had reported to the same individual in EOEA, providers became  confused about the programs’ respective roles during a visit. A subsequent  restructuring of EOEA placed the certification and ombudsmen in  separate divisions.
Shared EOEA administration also links the assisted living ombudsmen to  other programs serving elderly clients, such as elderly protective services  and the long-term care ombudsmen program. The state has emphasized  coordination with elderly protective services to ensure that assisted living  residents found in abusive situations quickly receive the help they need.
In addition, by placing assisted living ombudsmen in the same office of  EOEA as long-term care ombudsmen, Massachusetts has attempted to  maintain a degree of communication and coordination across the different  long-term care settings. As described by the provider representative we  interviewed, this arrangement allows for “cross-fertilization” between the  different programs. Although the programs differ substantially in their  approach to ensuring quality care, assisted living ombudsmen can  nevertheless draw upon the decades-long experience residing in the long- term care program.
Massachusetts’ assisted living ombudsman program regulations called for  a structure similar to that of the existing long-term care ombudsman  program. According to the state official, the long-term care ombudsman  program has a full-time training position and several regional coordinators  responsible for recruiting, training, and overseeing volunteers who make  site visits to nursing homes on a regular basis throughout the state.  However, according to the state official, the assisted living ombudsman  program never received sufficient funding to develop this type of  structure. Although the regulations authorized a similar network of  volunteers, the program staff has consisted of no more than three  professionals, later reduced to two, who handle complaints and inquiries  for 172 assisted living facilities. That left no one available to recruit, train,  and supervise volunteers, and consequently, visits to facilities only  occurred in response to complaints and not on a routine basis.
The Massachusetts legislature funded the assisted living ombudsman  program by creating an assisted living administrative fund, which  received the fees paid biennially by facilities as part of the certification  process. The ombudsman shared these funds with the assisted living  certification staff. However, in response to statewide budgetary pressures,  the legislature eliminated this fund in fiscal year 2003 and redirected the  certification fees to the state’s general revenues. Meanwhile, the long- term care ombudsman program continued to operate largely with federal  funds, authorized under the Older Americans Act.
The state and provider representatives we spoke with agreed that having a  separate assisted living ombudsman program led its staff to become  increasingly knowledgeable about assisted living and the particular  problems that arise within it. Both providers and residents benefit from  the fact that assisted living ombudsmen do not have to balance the needs  of residents from different types of long-term care facilities. However, the  decision to fund the program solely through the state made it especially  vulnerable to budgetary cutbacks when Massachusetts faced constrained  fiscal circumstances. Although the federally supported state long-term  care ombudsman programs also contend with scarce resources  nationwide, the Massachusetts assisted living ombudsman program  highlights the difficulty of sustaining this type of program with state funds  alone.

	Concluding Observations

Florida, Texas, Washington, Georgia, and Massachusetts have each found  ways to enhance the experience of assisted living residents in their states.  They have done so by developing information resources, expanding  complaint mechanisms, or allocating state resources to assisted living  programs. However, those initiatives that required increases in state staff  or funds fared less well during periods of fiscal constraint. The demise of  the Washington QIC program, despite its well-documented favorable  outcomes, and cutbacks in the popular Massachusetts assisted living  ombudsman program, reflect the vulnerability of any discretionary state  program to budget reductions. Florida’s Web site, Texas’ disclosure form,  and Georgia’s procedural remedies, by contrast, have benefited from the  important advantage that none of these programs required substantial  resources to initiate and maintain. These examples from five states can  perhaps aid other states in developing their own approaches to helping  senior citizens take full advantage of assisted living alternatives to nursing  home care.

	Comments from the States

We sent sections from an earlier draft of this report to state officials in  Florida, Texas, Washington, Georgia, and Massachusetts and asked them  to check that the section accurately described the development and  implementation of their state’s program. Officials from all five states  responded and provided technical comments that we incorporated where  appropriate.
As agreed with your offices, unless you publicly announce the contents of  this report earlier, we plan no further distribution of it until 30 days from  its date. At that time, we will send copies of this report to interested  parties. In addition, this report will be available at no charge on GAO’s  Web site at http://www.gao.gov. We will also make copies available to  others upon request.
If you or your staff have any questions about this report, please call me at  (312) 220-7600. An additional contact and other staff members who  prepared this report are listed in appendix IV.

Appendix I: Key Sources Consulted

National Organizations and Academic Experts  Alzheimer’s Association  American Association of Homes and Services for the Aging  American Bar Association Commission on Law and Aging  American Seniors Housing Association  Assisted Living Federation of America  Association of Health Facility Survey Agencies  Consumer Consortium on Assisted Living  National Association for Regulatory Administration  National Association of State Long-Term Care Ombudsman Programs  National Association of State Units on Aging  National Center for Assisted Living  National Citizens’ Coalition for Nursing Home Reform  NCB Development Corporation, The Coming Home Program  Catherine Hawes, Texas A&M University  Robert Mollica, National Academy for State Health Policy  Janet O’Keeffe, Research Triangle Institute  Major Studies on Assisted Living  Catherine Hawes, et al., A National Study of Assisted Living for the Frail  Elderly: Results of A National Survey of Facilities (Beachwood, Ohio:  December 1999).
Maureen Mickus, “Complexities and Challenges in the Long Term Care  Policy Frontier: Michigan’s Assisted Living Facilities” (Michigan State  University Applied Public Policy Research Program: September 2002).
Robert Mollica and Robert Jenkens, State Assisted Living Practices and  Options: A Guide for State Policy Makers (National Academy for State  Health Policy and NCB Development Corporation: September 2001).
Janet O’Keeffe, et al., Using Medicaid to Cover Services for Elderly  Persons in Residential Care Settings: State Policy Maker and  Stakeholder Views in Six States, Research Triangle Institute, prepared at  the request of the U.S. Department of Health and Human Services  (December 2003).
Charles D. Phillips, et al., Residents Leaving Assisted Living: Descriptive  and Analytic Results from a National Survey, prepared at the request of  the U.S. Department of Health and Human Services, Office of the Assistant  Secretary for Planning and Evaluation, June 2000.
Brenda Spillman et al., Trends in Residential Long-Term Care: Use of  Nursing Homes and Assisted Living and Characteristics of Facilities  and Residents, Washington, D.C.: Urban Institute, prepared at the request  of the U.S. Department of Health and Human Services, Office of the  Assistant Secretary for Planning and Evaluation, November 2002.
U.S. General Accounting Office, Assisted Living: Quality-of-Care and  Consumer Protection Issues in Four States, GAO/HEHS-99-27  (Washington, D.C.: Apr. 26, 1999)
U.S. General Accounting Office, Long-Term Care: Consumer Protection  and Quality-of-Care Issues in Assisted Living, GAO/HEHS-97-93  (Washington, D.C.: May 15, 1997).
Guides on State Assisted Living Regulations  American Seniors Housing Association, Seniors Housing: State  Regulatory Handbook, March 2003.
Lyn Bentley, Assisted Living State Regulatory Review 2004, National  Center for Assisted Living (March 2004).
Stephanie Edelstein, et al., Assisted Living: Summary of State Statutes  (in 3 volumes) AARP, 2000.
Robert Mollica, State Assisted Living Policy: 2002 (Portland, Maine:  National Academy for State Health Policy, November 2002).
We interviewed officials or individuals associated with the following  entities:  Florida Department of Elder Affairs  Florida Assisted Living Affiliation  Senior Resource Alliance (Florida)  Texas Department of Human Services  Texas Assisted Living Association  Texas Assisted Living Advisory Committee  Washington Department of Social and Health Services  Washington Health Care Association  Washington Long-term Care Ombudsman Program  Georgia Long-Term Care Ombudsman Program  Georgia Legal Aid Program  Senior Citizens Law Project (Georgia)  Assisted Living Association of Georgia  Massachusetts Executive Office of Elder Affairs  Massachusetts Assisted Living Facilities Association  Alice Mahar Dupler, Neva L Crogan, and Robert Short, “Pathways to  quality improvement for boarding homes: A Washington state model,”  Journal of Nursing Care Quality; Jul 2001; 15(4), 1-7.
Alice Mahar Dupler, “Quality Improvement Consultation Program in  Assisted Living Facilities, A Washington State Pilot Program: Phase II,”  unpublished, no date.

Appendix II: Florida Affordable Assisted Living “Find-a-Facility” Consumer Search

Appendix III: Texas Assisted Living Disclosure Statement

Appendix IV: GAO Contact and Staff Acknowledgments

	GAO Contact

	Acknowledgments

Eric Peterson, Carmen Rivera-Lowitt, and Janet Rosenblad made major  contributions to this report.

Summary:
Why GAO Did This Study

Assisted living facilities provide help with activities of daily living in a residential setting for individuals who cannot live independently but do not require 24-hour skilled nursing care. In 2002, over 36,000 assisted living facilities served approximately 900,000 residents. The states establish and enforce licensing standards for these institutions. Because states have taken widely differing approaches to regulating and supporting assisted living, they can potentially learn from each other's experiences as they consider changes to their own policies. GAO was asked to review challenges faced by consumers and providers of assisted living and seek out notable state initiatives addressing those challenges in three selected areas: (1) disclosure of full and accurate information to consumers, (2) state assistance to providers to meet licensing requirements, and (3) procedures for addressing residents' complaints. We identified specific examples of individual programs in Florida, Texas, Washington, Georgia, and Massachusetts that highlighted different approaches in these three areas, which other states might wish to consider emulating.

What GAO Found

Consumers faced with choosing an assisted living facility often do not have key information they need in order to identify the one most likely to meet their individual needs. Such information includes staffing levels and qualifications, costs and potential cost increases, and the circumstances that could lead to involuntary discharge from the facility. Initiatives in Florida and Texas have made critical data for consumer selection among facilities more readily available. Florida has created a Web site that enables consumers to learn about all of the facilities in their vicinity and identifies those providing the services the consumers are seeking at a specified price range. Texas has mandated a standardized disclosure statement for assisted living facilities, giving consumers concise and consistent data that facilitates comparisons across providers regarding services, charges, and policies. Assisted living facilities are more likely to meet and maintain licensing standards if they can obtain help in interpreting those standards and in determining what concrete changes they need to make to satisfy them. Washington State established a staff of quality consultants to provide such training and advice to assisted living providers on a voluntary basis. Evaluations of the program 6 months after its start and 2 years later documented improvements in provider compliance as well as resident health and safety. However, a statewide budget crisis led to a decision to stop funding the program, in order to maintain traditional licensing enforcement functions. Assisted living residents sometimes need help to pursue any complaints that they may have with their providers, especially when faced with an involuntary discharge. Long-term care ombudsmen are available in all states, but nursing home residents claim most of their attention. Georgia has legislated an extensive array of procedural remedies specifically for assisted living residents that provide them multiple means for seeking redress of their complaints. The existence of these remedies also strengthens the position of residents in the informal negotiations through which most such disputes are resolved in practice. Massachusetts has created a small staff of ombudsmen dedicated exclusively to serving assisted living residents. This allows them to specialize in addressing the particular problems that arise in assisted living facilities.