Environmental Scan of Instruments to Inform Consumer Choice in Assisted Living Facilities Prepared for: Agency for Healthcare Research and Quality U.S. Department of Health and Human Services 540 Gaither Road Rockville, MD 20850 http://www.ahrq.gov/ Contract No. 290-01-0003 Prepared by: Deborah Carpenter, MSN Samantha Sheridan, MA Kelly Haenlein, MHA Debra Dean, PhD Westat, Inc. Rockville, MD 20850 AHRQ Publication No. 07-0032-EF December 2006 This document is in the public domain and may be used and reprinted without permission. Suggested citation: Carpenter D, Sheridan S, Haenlein K, Dean D. Environmental scan of instruments to inform consumer choice in assisted living facilities. AHRQ Publication No. 07-M002-EF. Rockville, MD: Agency for Healthcare Research and Quality. December 2006. Acknowledgments We give special thanks to Catherine Hawes, PhD, Texas A&M Health Science Center, for her review and insightful comments on content of an early draft of this report. D.E.B. Potter, MS, of the Agency for Healthcare Research and Quality’s Center for Financing, Access, and Cost Trends, and Rhona Limcangco, of the Social & Scientific Systems, made substantial contributions to this report, particularly to the content of Appendix A. We thank the following individuals who provided technical oversight and content review throughout the project: D.E.B. Potter, MS, of AHRQ’s Center for Financing, Access, and Cost Trends; William Spector, PhD, of AHRQ’s Center for Delivery, Organization, and Markets; and Charles Darby, PhD, and Judy Sangl, PhD, of AHRQ’s Center for Quality Improvement and Patient Safety. We also thank Charles Darby for his expertise in contract management oversight. Mary L. Grady provided contract support through AHRQ’s Office of Communication and Knowledge Transfer. She provided editorial review and prepared the final manuscript for the AHRQ Web site. This report was prepared for the Agency for Healthcare Research and Quality by Westat, Inc., under contract 290-01-0003. The information and recommendations presented in this report do not necessarily represent the view of AHRQ. No statement in this report should be construed as an official position of AHRQ or the U.S. Department of Health and Human Services. ii Contents Summary.........................................................................................................................................1 Chapter 1. Background and Statement of the Problem .............................................................3 Introduction..........................................................................................................................3 Assisted Living Residences .................................................................................................4 Chapter 2. Study Purpose and Search Strategy..........................................................................7 Study Purpose ......................................................................................................................7 Search Strategy ....................................................................................................................7 Chapter 3. Assisted Living Defined............................................................................................11 Introduction........................................................................................................................11 Differences Between Assisted Living and Nursing Home Care........................................12 Resident Characteristics.....................................................................................................13 Philosophical Framework ..................................................................................................13 Aging in Place....................................................................................................................14 Facility Characteristics.......................................................................................................15 Services Provided in Assisted Living ................................................................................16 Chapter 4. Tools to Help Consumers Evaluate Assisted Living Facilities .............................21 Quality Monitoring ............................................................................................................21 Consumer-Oriented Information........................................................................................25 Chapter 5. Factors Important to Consumers When Choosing Residential Care ..................29 Facility Characteristics.......................................................................................................29 Staff....................................................................................................................................29 Services and Activities.......................................................................................................29 Independence and Choice ..................................................................................................30 Social Factors.....................................................................................................................30 Resident Characteristics.....................................................................................................30 Resident’s Family Satisfaction ..........................................................................................31 Chapter 6. Overview of instruments Used in Evaluating Residential Care ...........................33 Consumer-Reported Instruments .......................................................................................33 Expert Observational Instruments......................................................................................34 Provider-Reported Instruments..........................................................................................34 Survey Methods .................................................................................................................35 Survey Summary................................................................................................................36 Chapter 7. Measures Framework, Gaps, and Overall Summary............................................37 Services ..............................................................................................................................38 Facility Environment .........................................................................................................42 Summary ............................................................................................................................47 iii References.....................................................................................................................................49 Appendixes................................................................................................................................. A-1 Appendix A. Reviewed Surveys and Tools .................................................................... A-1 Appendix B. Detailed Description of Databases Searched with Results.........................B-1 iv Summary Assisted living continues to emerge as a major source of housing for the growing elderly population. Several factors will augment this trend, including the New Freedom Initiative Medicaid Demonstration Act of 2003, response to the 1999 Olmstead v. Supreme Court decision, the “rebalancing” demonstrations from institutions to home- and community-based sciences, and Medicaid cost containment strategies that are aimed at reducing nursing home use. Assisted living definitions vary, but fundamental to this long-term care setting is a philosophy of independence, with an emphasis on dignity, autonomy, choice, privacy, and maintaining a home- like environment. When selecting an assisted living facility, a consumer’s ability to make informed choices is compromised by the variability in philosophy, services, and accommodations among places called “assisted living” and by the lack of readily available, objective information about the characteristics and performance of facilities. While there are mechanisms to evaluate the quality of assisted living facilities, such as State licensing boards and private accrediting programs, the results of these evaluations are not readily accessible to consumers. To address this need, the Agency for Healthcare Research and Quality (AHRQ) sponsored an environmental scan of assisted living questionnaires and other long-term care instruments currently in use. The results of this scan, along with other initiatives, will inform the development of resources to help public and private organizations provide information to assisted living consumers. Residents’ experiences that affect their satisfaction and quality of life are key in developing consumer-oriented information tools. A number of factors are found to have strong influences on the resident’s experience and life. For example, the facility’s physical characteristics, such as private room and bath, and the safety and security the facility provides are important to consumers. The attitude of assisted living staff and the respect they show toward residents— along with services such as meals, activities, and access to health care, including medication assistance—also influence consumers’ satisfaction and quality of life. Additional factors contributing to consumer satisfaction are social support and interactions among staff and residents that support a home-like atmosphere, as well as the residents’ ability to maintain an independent lifestyle. The instruments reviewed in this scan were used in an array of assisted living settings and other long-term care settings, such as nursing homes and residential settings, and include content that could be applied to assisted living. Consumer-reported instruments, expert observational instruments, and provider-reported tools featured content used to evaluate services offered, the physical and cultural environments, staff issues, activities, social support, and contractual issues. Gaps in content exist between what is important to residents and what is addressed in most of the instruments, including medication management, patient safety issues, special diets, specialized care for cognitively impaired residents, assessment of potential resident abuse, physical accessibility to the facility, residents’ involvement in planning their care, and families’ involvement. A clearer understanding of how residents define safety and security is also needed. Areas related to staff—such as staffing levels and turnover, training, knowledge, and abilities— 1 are not fully addressed in the instruments. Finally, content related to disclosing policies that relate to discharge and costs of care are rarely included. 2 Chapter 1. Background and Statement of the Problem Introduction The assisted living industry has emerged over the past two decades in response to the aging of the U.S. population. This has sparked an increased interest in helping consumers better understand and evaluate the services provided by this unique type of long-term care. Recent Federal initiatives will lead to an expansion of the need for such alternatives to nursing home care. The New Freedom Initiative is aimed at removing barriers for individuals with disabilities and long-term illnesses to live in a community setting, implementing the Supreme Court’s Olmstead Decision, and redirecting Medicaid long-term care resources from institutions to community settings (Centers for Medicare & Medicaid Services, 2005). Currently, consumers evaluate assisted living facilities largely from marketing materials, their impressions from on-site tours, State evaluations of the facilities (if available), opinions of residents who use the facilities and/or their families, or professional case managers. Many advocacy and State organizations produce consumer resources such as checklists and needs assessment tools to help guide consumer decisions. Although these guides help educate consumers and assist them in making informed choices, they fall short of providing consumers with an evidence-based approach to compare and contrast facilities objectively and systematically on policies and other key dimensions of services and facility performance. In recent years, Federal agencies have also focused attention on the scarcity of information to help consumers make choices about assisted living. According to a General Accounting Office (GAO) report, consumers often do not get sufficient information about the policies of assisted living facilities to make an informed decision (GAO, 1999). In April 2001, the U. S. Senate Special Committee on Aging held a hearing in response to increased concerns about the lack of information available to consumers as they attempt to differentiate among assisted living facilities and identify those most likely to meet their needs (Assisted Living Workgroup [ALWG], 2003). The Committee asked a group of stakeholders from the assisted living industry to make recommendations aimed at ensuring a consistent level of quality in assisted living services across the Untied States. Nearly 50 organizations—representing providers, consumers, and regulators—formed the ALWG. The operating structure of the ALWG involved the division of work among stakeholder subgroups as they developed 110 recommendations that were voted on by all the organizational members (ALWG, 2003). The ALWG Accountability and Oversight Workgroup addressed issues related to the design of regulatory systems that provide oversight to assisted living facilities. Their April 2003 recommendations dealt with the need for stronger provisions for consumer protection. For example, in Recommendation 8, entitled “Federal Jurisdiction over Assisted Living,” an excerpt notes that the government shall exercise oversight “to protect consumers from unfair and deceptive acts and practices under the Federal Trade Commission Act” (ALWG, 2003, p. 23). Similarly, the ALWG Accountability and Oversight Workgroup advocated enhanced consumer information systems. Thus, Recommendation 12 called for developing a uniform reporting form and models for States to use in producing consumer reports on assisted living. This recommendation was not adopted by the full ALWG—which requires a positive vote by two- 3 thirds of the members—largely because of dissension about who would develop the reports. However, many stakeholders supported this recommendation, arguing that “a crucial part of the ongoing effort to promote quality in assisted living is the development of consumer reports that will help consumers be more informed about quality outcomes . . . and would help consumers compare across states” (ALWG, 2003, p. 53). Assisted Living Residences The Federal Trade Commission (FTC) conducted hearings in 2003 focused on the nature of information that is disclosed to consumers about the cost and quality of the services that they receive from assisted living facilities. In 2004, the FTC released a report summarizing the results of these hearings and noting that much work needs to be done to collect and present reliable, usable, and meaningful consumer information (FTC, 2004). As a followup to the ALWG, GAO published a report (2004) showcasing State efforts to improve consumer protection and noting that “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” (GAO, 2004, p.2). At a White House Conference on Aging (2005), long-term care stakeholders from both the public and private sectors cited the importance of providing access to information for consumer choice and noted that additional tools are needed to help consumers direct their care. In response to this undisputed need, the Agency for Healthcare Research and Quality (AHRQ) has launched an initiative aimed at improving consumers’ ability to assess the quality of services in assisted living facilities. AHRQ’s goal is to develop resources that help public and private organizations better inform consumers about the nature, scope, and quality of services in assisted living. An example of such a resource might include a consumers’ choice “tool kit” that would be designed to help consumers assess the care delivered, review important indicators or aspects of the quality of life within a facility, and consider other relevant issues in selecting an assisted living facility. As background for this effort, AHRQ initiated three projects to gather information: • Convening focus groups of stakeholders—such as consumers, providers, and ombudsmen—to determine the needs and priorities for developing improved consumer information. • Reviewing how States currently monitor assisted living facilities, identifying existing tools that States use to communicate information for consumer choice, and identifying barriers to providing information to consumers. • Collecting, evaluating, and identifying gaps in long-term care instruments that that could be used or adapted for assisted living. Such instruments ask residents to evaluate or rate care, services delivered, and quality of life. This report presents the results of one of these initiatives—the environmental scan of assisted living questionnaires and other long-term care instruments that may be adapted to help inform consumer choice. The scan included a systematic review of the literature on instruments that 4 measure consumer experiences and satisfaction with assisted living and other long-term care venues, including instruments that measure resident quality of life. The need for information about assisted living facilities may originate with either a potential resident who is selecting a facility or from the family or other individuals who are instrumental in the decisionmaking process. For the purposes of this environmental scan, the term “consumer” refers to both potential assisted living residents and other potential decisionmakers, including family members, unless otherwise noted. In addition to these targeted assisted living projects, two additional programs are currently in development. The two programs are jointly supported by the Centers for Medicare & Medicaid Services (CMS) and AHRQ and will contribute to AHRQ’s strategy of developing long-term care products and programs. The Consumer Assessment of Healthcare Providers and Systems ® (CAHPS ) Nursing Home Surveys are designed to provide information on the experiences of nursing home residents and their families. Also, CMS is supporting a literature review and environmental scan of instruments and quality assessment methods in home health care. The remaining chapters of this report describe the study purpose, attempt to define and describe assisted living, examine ways that assisted living facilities are currently evaluated, present factors that influence satisfaction of consumers and residents, and provide an overview of tools available to evaluate assisted living services and facilities. Finally, the report describes the “gaps” in the instruments reviewed—that is, important aspects of facility performance from the perspective of consumers and other stakeholders that are not covered in instruments that have been used in research studies and other attempts to assess assisted living facility (ALF) performance. This analysis also uses other instruments, such as those used in nursing home settings, to offer suggestions on how to address such gaps. An overview of each of the instruments reviewed is provided in Appendix A. 5