Assisted living has grown rapidly as an important source of services in residential settings for older people. Because of this rapid growth and differences among States in how assisted living is defined and licensed, and even what it is called, older people and families need information to understand what assisted living is, how it may meet their needs, and how to choose a facility. This report was commissioned by AHRQ to describe the extent of information available to consumers and families from State agencies and to describe State oversight policies and practices. The report was prepared by the National Academy for State Health Policy under a subcontract with Westat.
Information for the report was collected in 2005 through telephone interviews with key contacts in State licensing agencies, a review of the licensing regulations in each State, and a search of the Web site for each State licensing agency and State Unit on Aging (SUA). The telephone interviews with State licensing agency contacts were unstructured discussions of the State's approach to oversight, the survey process, methods of obtaining information from residents and staff about the services provided, information about the survey findings that is available to consumers, information available on the agency's Web site, and the agency's interest in developing a method to rate or profile facilities.
Web sites change frequently and may not be current. The links were active as of November 2005. In addition, in any given year about half of the States make minor to major changes in their licensing rules, and the information posted on the Web sites may not always reflect current policy or information.
Section I of the report describes the primary findings. Section II contains information abstracted from consumer guides that are available from the Web sites of State agencies. Section III includes brief summaries of each State's approach to regulating assisted living and the information that is available on the State agency Web sites.
Assisted living has emerged as a popular choice for people who need supportive and health-related services and help with unscheduled activities of daily living. Simply understanding assisted living can be confusing because there is no universal (or Federal) definition of the term, and there is no standard definition or term used by all States.
The term assisted living is used in 41 States, but similar facilities may be licensed by States as personal care homes, residential care facilities, adult care homes, homes for the aged, and other types of facilities. The services and level of care available also vary by State and within States. State regulations generally describe the parameters of the people who may be served and the services that may be offered, but facilities often set their threshold below what may be allowed by the regulations.
For this study, assisted living is a generic term that refers to facilities, buildings, or residences that are licensed by States to provide support and personal care services to individuals who are not related to the owner.
The supply of licensed units grew from about 612,000 in 1998 to 937,601 in 2004. However, the rate of growth slowed from 13 percent between 2000 and 2002 to 3 percent between 2002 and 2004.1 State licensing officials believe there is excess supply in many areas of their States, and that the growth rate has declined because of competition and pressure on occupancy rates. Because of its growth and the increasing needs of people who move to assisted living facilities, State oversight staff, policymakers, legislators, advocates, family members, consumers, and Federal agencies are interested in the oversight of facilities and the quality of care delivered to residents.
Despite widespread use of the term, assisted living has evolved as a generic term that describes services in licensed residential settings. Some States have separate licensing categories and requirements for assisted living and residential care facilities; others use the terms interchangeably. Definitions of assisted living include references to the licensed entity, the type of building, the relationship of the residents to the owner, the purpose for which a license is sought, the philosophy of the regulations, the needs that may be addressed or not addressed, the services that may or may not be provided, and the minimum size required for license.
The widespread use of the term assisted living and the considerable State variability in its definition continue to fuel debate about what assisted living is and should be, how it should be regulated (particularly as the number of residents with higher levels of need increases), and whether facilities that do not support key assisted living principles should use the term.
When the term was first used, State officials and others believed it reflected a new philosophy. Regulations were developed based on consumer choice, independence, dignity, and privacy. Licensing rules sometimes referred to “residences” rather than “facilities” to differentiate them from older, more institutional settings. Private apartments or rooms with attached baths replaced shared rooms and bathing facilities.
Assisted living in Oregon, one of the first States to use the term, “means a building, complex or distinct part thereof, consisting of fully self-contained individual living units where six or more seniors and persons with disabilities may reside. The facility offers and coordinates a range of supportive personal services available on a 24-hour basis to meet the activities of daily living (ADLs), health services, and social needs of the residents described in these rules. A program approach is used to promote resident self-direction and participation in decisions that emphasize choice, dignity, privacy, individuality, independence and home-like surroundings.”
States creating a new category called assisted living retained existing categories and requirements for other residential care settings. Over time, more States adopted the term to reflect its emerging appeal, but assumptions about assisted living—assumptions shared by many consumers and researchers—often were not adopted.
Several types of regulations emerged. Some were institutional while others reflected a new approach, and two States focused on licensing the provider of services rather than the setting or building.2 Generic use of the term assisted living obscures the difference between types of residential care settings and makes it difficult for consumers to determine which setting will best meet their current and future needs.
Because there is no common definition of assisted living, consumers and family members face real challenges when they seek information about this residential option. A 1999 report by the Government Accountability Office (GAO), formerly the General Accounting Office, noted that consumers need “clear and complete information” about the services provided by individual assisted living residences and the cost of those services.3 In most States, essential information is available directly from the facilities.
Several national and State organizations have developed checklists or guidelines to help consumers obtain information and compare residences. More recently, State agencies have developed Web sites to assist consumers. Most of these sites allow consumers to search for residences and list the name of the residence, address, phone number, and administrator. A few include survey findings and complaints.
The GAO report found that prospective residents obtain information from written materials, tours, personal interviews, and recommendations from friends. The report noted that most residents received assistance from a family member, friends, or health professionals to help make their decision.
In 2004, GAO was asked to review State initiatives that address issues faced by consumers and providers. The study focused on three areas: disclosure, State efforts to help providers meet minimum standards, and complaint procedures.4 The study examined initiatives in Florida and Texas to provide information to consumers, use of remedies to improve compliance in Georgia, consultation from the licensing agency in Washington, and an ombudsman program in Massachusetts.
The U.S. Senate Aging Committee held a hearing in 2000 to discuss the issues described in a GAO report including the lack of a common definition of assisted living and resulting consumer confusion about this residential option. The Committee suggested that industry and other key stakeholders form an Assisted Living Workgroup (ALW) to review key issues and make recommendations that would improve quality and lead to a common definition. The workgroup included over 50 organizations with a variety of interests including industry associations, professional organizations, consumer and advocacy groups, and State officials.
The ALW presented its recommendations to the Senate Aging Committee at a hearing in April 2003. Most of the informational issues affecting consumers were addressed under recommendations related to resident rights. The recommendations generally require that information made available to consumers be understandable, consistent with written contracts, and complete.
Information on assisted living is available electronically from multiple sources. An Internet search identifies national and State provider associations, provider Web sites, directories, and referral services from for-profit organizations, consumer advocacy organizations, marketing and consulting firms, the Administration on Aging, and State agency Web sites. Information may also be obtained from State departments, divisions, or bureaus on aging; area agencies on aging; government consumer information agencies; and other county or local agencies.
Information about assisted living is also available from the U.S. Department of Health and Human Services' Administration on Aging (AoA), under the “elders and families” and “housing services” section of the Web site. Visitors to the Web site will find a description of assisted living and the kind of residents who live in assisted living facilities. The Web site presents a brief checklist that can be used to evaluate a facility's characteristics and a list of other consumer and provider-based organizations that offer additional information.5
There are many sources of information about assisted living. This report describes information available from State agencies. States are responsible for licensing facilities and providing oversight to monitor quality of care and compliance with statutory and regulatory requirements. Information for consumers and families is primarily available from agencies that are responsible for issuing regulations and licensing and monitoring facilities and agencies that serve older adults (Table 1 and Table 2).
State licensing agencies use the Internet and their Web sites to communicate information to consumers and family members about assisted living. The project identified several types of information posted on State licensing agency Web sites about assisted living. A review of licensing agency Web sites identified information that is useful to consumers and owners, operators, and developers of assisted living facilities (Table 1).
Some of the information posted is directed toward consumers and family members. Other information—such as regulations, survey guidelines, and incident reporting forms—is primarily directed toward owners and operators, but it is also available to consumers and family members who are interested.
State Web sites most commonly post the regulations used to license and survey facilities. Forty-eight States post links to their licensing regulations and statutes. Links to State licensing regulations are generally available on the Web site of the licensing agency. However, some regulations can be found on Web sites hosted by the Office of the Secretary of State or the State legislature.
Twenty-six States post additional information primarily for facility owners, administrators, and managers. Provider information includes documents relating to the survey process, guidelines and requirements, training, background checks, various forms, and notices.
Forty-two States post lists of licensed facilities. The information may be posted as a searchable database or a simple file listing the name of the facility, address, and phone number. Fourteen States post a consumer guide or a list of questions to ask on their Web site. Guide means a resource to help consumers and families understand assisted living and compare and select a facility.
Twelve States include information from survey reports and complaint investigations. Survey reports are prepared by State monitoring staff following on-site visits to assess compliance with State licensing requirements.
All States operate programs and services for older adults under the Older Americans Act. State agencies responsible for these activities may be an executive office, department, division, bureau, or commission and are generally referred to as State Units on Aging (SUAs). Some are cabinet level agencies; most are units within a larger umbrella agency or department.
Some SUAs are also responsible for Medicaid home and community-based waiver services programs and State general revenue home care programs. Some aging agencies serve only older adults (ages 60 or 65 and older), while others also serve adults with physical disabilities and/or individuals with developmental disabilities.
SUAs are an important source of information for older adults and families about long-term care services, including assisted living options. SUAs have a broader mission than licensing agencies and are charged under the Older Americans Act with a broad range of services to older adults, including services “designed to encourage and assist older individuals to use the facilities and services (including information and assistance services) available to them.”a
Web sites typically include information about the services and resources available through SUAs, as well as general information about Medicare and resources available through Area Agencies on Aging. (Although they were not part of this review, Area Agencies on Aging may also have information for consumers about assisted living.) Thirty SUA Web sites contained information or links to information about assisted living (Table 3). Eight of the SUAs are also responsible for licensing or certifying assisted living facilities.
A few SUAs have links to Web sites maintained by groups outside of State government. The Nebraska Department of Health and Human Services and the State's SUA link to a non-profit organization, Answers4Families, which is a project of the Center on Children, Families, and the Law at the University of Nebraska. It was formed to “provide information, opportunities for dialogue, education, and support to Nebraskans with special needs and their families by developing and providing Internet resources,”6 and is supported by funding from the Nebraska Aging and Disability Services and other State agencies.
The site includes a guide to assisted living, a link to a list of facilities on the licensing agency's Web site, information about coverage of assisted living under the waiver, a telephone number to file a complaint, and a description of the Medicaid appeal process.
Several SUAs described plans to add information to their Web site. With support from the State legislature, the Ohio Department on Aging is preparing to expand its long-term care consumer guide to include more information about assisted living. The information may include results from a consumer satisfaction survey, information about specific facilities, and compliance information. The Idaho Commission on Aging is working with Idaho Legal Aid to develop a pamphlet that will provide information about selecting a facility.
Other SUAs noted that information about assisted living is available from an ombudsman program. Originally established to work with nursing home residents, State ombudsman programs now work with assisted living residents and prospective residents. Local ombudsman programs in California offer consumers directories, checklists, and fact sheets. Web-based tools have not been developed, although the State ombudsman office has discussed compiling and posting survey information with the licensing agency.
One of the goals of this project was to assess interest in ways to help consumers compare facilities. Rating or profiling of facilities requires sources of information that are standardized and contain sufficient data to allow consumers to determine how a specific facility compares to other facilities or where it falls along a continuum.
Very few States are actively developing a system to rate or profile assisted living settings, although some States are interested in developing a rating system. Unlike nursing homes, most States do not require the reporting of assessment data that are needed to establish outcomes that can be tracked and compared with other facilities.
Facility performance information can be obtained from survey reports and complaint investigations, but this information is not automated or published in most States. All licensing agencies will provide information about a specific facility to consumers who submit a written request to the licensing agency.
As a part of their Federal Medicare and Medicaid oversight responsibilities, the Centers for Medicare & Medicaid Services (CMS) manages a database that allows consumers to obtain information about nursing homes throughout the country. The Web sites of State agencies responsible for licensing and oversight of nursing homes also have information about nursing home quality or links to the CMS Web site.
The Nursing Home Compare Web site7 contains information on quality measures, staffing, and inspection results. Quality measures are based on Minimum Data Set (MDS) resident assessment information. Information about nurse staffing is collected by survey agencies prior to regular inspections. Inspection results present the citations issued by the survey agency following the regular inspection.
The quality measures allow consumers to compare facilities against Statewide and national averages on 15 outcome measures that include increased need for help with ADLs, residents with moderate to severe pain, pressure sores, percentage of residents receiving catheter care, weight loss, urinary tract infections, and other measures. The staffing results present the number of staff minutes per resident for registered nurses, licensed practical nurses, and certified nursing assistants.
The inspection results describe the citation, the date the violation was corrected, the level of harm, and the scope of harm or potential harm. A summary table presents the number of deficiencies for the facility compared to the average for all nursing homes in the State and the Nation.
Comparable information is not available for licensed assisted living facilities. Data on outcomes generally are not collected by State licensing and oversight agencies and therefore are not available to compare facilities. In addition, unlike nursing home requirements, States set their own policies on the characteristics of residents who may be served, the services that may be provided, and staffing requirements; these State-to-State variations do not permit comparisons across States. Despite these limitations, a few States are interested in making better use of the survey information that is available.
Two States—Alabama and Maine—developed approaches to rate and compare assisted living facilities. Alabama implemented a system for rating facilities in 2004. Using survey findings, facilities are rated green if they have minor deficiencies, yellow if they have a problem that could pose a substantial risk to residents, or red if the survey found serious risk to residents. Facilities rated red receive full surveys. Shorter surveys are conducted for facilities rated green or yellow.
The Alabama scoring system arranges deficiencies into three categories: routine deficiencies that have limited potential for harm; systemic or substantial risk deficiencies that have a high potential for harm; and critical deficiencies that result in actual harm and lead to mandatory enforcement.
Routine deficiencies present minimal risk to residents and receive a score only if more serious deficiencies are not present. Each deficiency reduces the facility's score by one point each up to a maximum of ten points. Facilities with routine deficiencies receive a score between 90 and 100 and are coded green.
Examples of deficiencies include:
Substantial risk deficiencies are scored only when actual harm deficiencies are not present. The first substantial risk deficiency receives a score of 11, and additional substantial risk deficiencies add three additional points for up to a total of four deficiencies. Facilities that score between 80 and 90 receive a deficiency report with a yellow border.
Actual harm deficiencies are noted when residents have been injured or neglected due to inappropriate or inadequate care, and mandatory enforcement is required. These deficiencies result in an enforcement action. The first actual harm deficiency reduces the facility's score by 21 points. Each subsequent deficiency reduces scores by five points. Inspection reports that contain citations for actual harm are printed with a red border. Eight deficiencies are listed that lead to mandatory enforcement. An additional 44 deficiencies are included in the substantial risk group and may lead to mandatory enforcement if they result in actual harm.
Each facility receives a rating at the completion of the survey. The rating sheet lists the facility's name, the date of the inspection, address, name of the administrator, capacity, census, and the surveyor's name. The score and points deducted are listed above a scoring guide. The page has a “notice to the consumer” that states:
“The Department of Public Health periodically inspects assisted living facilities. This facility has earned a numeric score based on compliance with the assisted living regulations. The facility is required to post this score and its plan of correction in a conspicuous area available to the public. Please assist us in keeping standards high. If you believe that the facility has not corrected the problems cited in a reasonable time, please contact the Department of Public Health Assisted Living Unit.”
A form is attached to the inspection report that lists the rule, a description of the deficiency, specifics about the deficiency, and the category of the deficiency.
Maine developed quality indicators using the Resident Assessment Instrument (RAI). Built on the MDS for nursing homes, the RAI collects information about drug interactions for behavioral health medications, pain, presence of unsettled personal relationships, and the resident's involvement in the social activities within the facility. The State oversight agency prepares regular reports that present comparisons of facilities on demographic and other variables reported in the RAI. The variables compared include: age, sex, the number and type of ADL and instrumental activity of daily living (IADL) impairments, diagnosis, reason for admission, number of medications, continence, and others.
Facilities have used the reports to develop their own quality improvement strategies or to revise staffing or procedures to address the changing characteristics of their residents. Facilities are able to compare themselves with the average for all facilities in the State. For example, 40.7 percent (11) of residents in a facility with a total of 27 residents experienced a fall compared with 36.8 percent of the residents State-wide. Thirty-seven percent of the residents in the facility used nine or more medications in the preceding 7 days compared with 52 percent State-wide.
The Texas Department of Aging and Disability Services (TDADS) developed a quality reporting system for Medicaid certified nursing facilities that may be extended to assisted living facilities in the future.8 The Quality Reporting System (QRS) includes an overall rating using a five grade scale, with symbols similar to those used in Consumer Reports; symbols range from most favorable to least favorable for each facility, based on the average score for four indicators. Indicators are identified that might be considered “advantages” or “disadvantages” for the resident. A rating is determined for potential advantages (PAS), potential disadvantages (PDS), and investigations and inspections. The scale for each area is presented in Table 4.
The facility search function currently includes a description of deficiencies found during the survey process and the number of complaint investigations. Examples of deficiency citations include:
TDADS plans to devise a similar scoring system to rate and compare assisted living facilities. However, it is unclear whether this effort will be undertaken soon.
A few States expressed interest in developing a method to rate or profile facilities, but more were reluctant to do so. Virginia noted that they have a database with the survey information and could develop scoring methods based on the number, extent, and type of violations. One official noted that their State might be ready to develop a system in 4 to 5 years.
Licensing staff know which facilities are good and which are poor, and they provide information to consumers when they are contacted. Converting that information to a score that can be explained and defended will take considerable time and staff work. Pennsylvania noted that development of such a system is part of their 2-year work plan.
Several States noted that it was not the State's role to rate facilities but rather to provide access to information that allows consumers to make their own decision. One State said they would not object to a private entity using survey information to rate facilities, but it should not be a function of the State agency. Another State official felt there is too much variation in the size and types of residential care settings to develop a rating system that is fair and accurate. A few State contacts observed that they did not collect sufficient data to design a rating system.
Some contacts expressed reservations about the reliability of rating systems. One licensing official suggested that ratings are overrated and may change quickly (e.g., a change in an administrator or director of nursing can have a significant effect in a short period of time that is not reflected in a rating system). Another State official felt the methodology used might be artificial and lack sufficient data to explain differences between facilities. This official said there needed to be a national standard and extensive financial support for data collection and staffing to monitor, report, and analyze facility performance.
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a Older Americans Act. 42 USC Section 3030D.