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ENFORCEMENT IN THE ASSISTED LIVING INDUSTRY:
DISPELLING THE INDUSTRY’S MYTHS


For the foreseeable future, legislation addressing the assisted living industry is likely to remain focused on the state level. Although the United States Senate Special Committee on Aging held two hearings on assisted living in 1999(1) and 2001(2) and convened the national Assisted Living Workgroup after the second hearing,(3) the absence of direct federal reimbursement to assisted living facilities makes new federal regulatory oversight unlikely(4) - at least until the growing crisis and failures in care at the state level(5) and ever-increasing federal payments for assisted living(6) lead to demands for federal legislation and oversight.

The assisted living industry is taking an active role in setting the legislative agenda for state standards and enforcement, with positions echoing those of the nursing home industry. Advocates for assisted living residents have a different view of enforcement for the assisted living industry.

What does the assisted living industry say?

"Avoiding the mistakes of nursing home legislation in the regulation of the assisted living industry at the state level" is the mantra of the living industry. What does this mantra mean in the area of public oversight of quality of care?

The assisted living industry calls for state regulatory systems to be based on "outcomes" of care and "customer satisfaction."(7) It opposes the "adversarial" approach that imposes "punitive" sanctions against nursing facilities and urges that state regulatory agencies work collaboratively with facilities, providing them with technical assistance and help.

These positions are not new. They are the same platitudes that the nursing home industry uses(8) as it seeks to dismantle the regulatory structure of the 1987 nursing home reform law.(9) They lack merit as principles for overseeing care in the assisted living industry just as they lack merit for overseeing the care in nursing homes.

Outcomes

If properly defined, outcomes measures should mean assuring that good outcomes for residents actually occur. As beneficiaries' advocates have argued for many years,(10) measures of quality should not simply evaluate whether facilities have the potential for good outcomes; they need to consider actual outcomes as well.

The assisted living industry distorts this consumer principle. It translates an outcomes focus into limited regulatory standards mandating specific care practices. "Don't look at process and structure," the industry argues. "Just look at outcomes."(11) Such an approach to regulatory standards and enforcement is simplistic and is not supported by research findings or by public policy considerations.

The industry's approach misinterprets the structure, process, and outcome triad developed by Avedis Donabedian, who viewed process and outcome measures as complementary, not as alternatives to each other.(12) In addition, a variety of technical and statistical issues indicate that an exclusive focus on outcomes of care may give distorted views of the quality of care actually provided to residents. First, since care in long-term care institutions is multidimensional and there is little or no correlation between outcomes on different aspects of care, focusing on a single outcome or only a limited number of outcomes gives a distorted view of quality. Second, small facilities and rare events create concerns about the statistical validity of outcomes that are publicly reported. Third, the difficulty of separating facility influences from resident influences affects the validity of limiting evaluation to outcomes. Issues such as these have persuaded researchers in the field of quality measurement to recommend a combination of outcome and process measures in the evaluation of complex health care institutions such as nursing homes.(13)

Additional policy arguments also undermine an exclusive reliance on outcomes of care.

Regulatory systems traditionally exist, under states' police power, in order to prevent the occurrence of poor outcomes that are avoidable when facilities provide residents with good care.(14) A demand for good outcomes does not negate the importance of process and structure requirements, as the industry urges. Process and structure standards are used, and intended, to make poor outcomes less likely to occur. No one would suggest, for example, that a health care facility wait for an outbreak of contagious disease before instituting an infection control program. Having such a program in place is expected to make infections less likely. Process and outcome standards are designed to serve preventive purposes across the health care spectrum and to lead to good outcomes.

Customer satisfaction

"Customer satisfaction" means considering how residents subjectively describe their feelings, usually, as determined by a survey or questionnaire. Satisfaction is an important component of quality care, but it is not sufficient and cannot replace regulatory oversight.(15)

Studies demonstrate that lay people are most able to describe satisfaction with such non-technical aspects of health care as politeness of staff, timeliness of medical appointments, and facility amenities.(16) Lay people are less able to determine whether a physician ordered the right test or read its results correctly and prescribed the correct medication in response. Consumers' satisfaction is based on a presumption of medical competence that an effective regulatory system is designed to assure.

Studies also demonstrate that health care consumers in long-term care residential settings may overstate their satisfaction because of fear of retaliation or they may be unable to express their feelings at all because of cognitive impairments.(17) Satisfaction is not meaningful in any real sense of the word when consumers think they have no alternatives or believe their alternatives would be worse than their current situations. "Making do" with a bad situation is not satisfaction.

Finally customer satisfaction surveys that are used as a tool of a health care provider's marketing department, as most are, are inherently suspect.(18) Only a fully independent evaluation of consumers' satisfaction can have the possibility of any validity and usefulness.

Technical assistance

Instead of saying, "Don't enforce standards against us," the industry says, "Help us do better." While the words are different, the industry's goal is the same with both statements. The industry's request for technical assistance is simply a more politically palatable way of removing regulatory oversight and facility accountability for actual compliance with public standards.

Enforcement and technical assistance need not be mutually exclusive, and in fact they coexist successfully as components of a comprehensive regulatory approach for nursing homes in Washington State. But in most states, enforcement and technical assistance are treated as alternative, and mutually exclusive, approaches to public oversight. Several years ago, for example, the Texas legislature shifted 20% of the regulatory agency's nursing home enforcement staff into a technical assistance unit housed in the survey agency. With fewer resources, the state's ability to enforce standards of care declined.

Avoiding the mistakes of nursing home regulation

While the assisted living industry calls for avoiding the "mistakes" of the nursing home system of oversight and enforcement,(19) many of the "mistakes" of enforcement in the nursing home context are related to the regulatory system's documented failure to enforce standards of care that are mandated by the nursing home reform law.(20) The mistake is the absence of an appropriate regulatory response to identified deficiencies - the absence of any enforcement consequence for poor care. The "mistake" is not the regulatory agencies' excessive zeal.

State experiences

The type of oversight championed by the assisted living industry has been implemented in some states, with poor results. As a result of their experiences with assisted living facilities and limited state oversight, a number of states appear to be moving in the direction of increasing their oversight of the assisted living industry. They are creating regulatory systems more similar to the survey and enforcement systems currently in place for nursing homes. Wisconsin and Iowa, two of these states, are briefly discussed here.

Wisconsin

A lengthy series in the Milwaukee Journal Sentinel in 2001 documenting egregious failures of care(21) led to a comprehensive study by the nonpartisan Wisconsin Legislative Audit Bureau. The Audit Bureau's December 2002 report compared the state's limited oversight of the assisted living industry with the more extensive oversight of nursing homes.

The Audit Bureau found that surveys of nursing homes are governed by a federal protocol, which requires unannounced annual inspections by multidisciplinary teams, including nurses.(22) In contrast, the state's oversight of assisted living "is controlled entirely by the State, is less-established, and each inspection typically involves a single inspector who is not required to have medical credentials."(23) Only one of the 21 assisted living surveyors is a registered nurse.(24)

Surveyors visited nursing homes an average of 4.4 times in fiscal year 2000-01, while nearly half of assisted living facilities did not receive a single visit for any purpose during the same period and 13.3% had not been visited for more than two years.(25)

The report recommended ways to strengthen the state's oversight of assisted living:

If the Legislature is not satisfied with the current regulatory process for assisted living facilities, a number of options are available, including establishing standards for the frequency with which assisted living facilities should be inspected, establishing minimum qualifications for assisted living inspectors, and increasing the number of staff assigned to inspect assisted living facilities.(26)

Iowa

Iowa implemented the type of collaborative oversight proposed by the assisted living industry, combining technical assistance and customer satisfaction surveys.(27) In a series of articles by Clark Kaufmann in 2002, the Des Moines Register exposed Iowa's lax oversight of the assisted living industry and its consequences for residents.

Between 1997, when the state began regulating assisted living, and 2002, the state did not impose a single penalty of any type against any assisted living facility, regardless of the level and extent of the facility's noncompliance with standards.(28) The state's "hands-off" approach to regulation was deliberate. Beth Bahnson, the Department of Elder Affairs' administrator for assisted living, described Iowa as replacing a traditional regulatory process with an approach that "'negotiates balanced solutions'" to problems.(29) She described her agency's approach to the assisted living industry: "'We're saying to them, "Learn from your mistakes and do better next time."'"(30)

Under Iowa's system, a Department of Elder Affairs' "consultant" called an operator to schedule a visit. The consultant talked to workers, residents, and families. If the consultant identified problems, the department and the operator's administrator negotiated a plan of correction, which had to be approved by residents and family members.(31)

The Des Moines Register described implementation of this philosophy. When the state found that a facility needed to serve more nutritious meals, especially to residents needing special

diets, it suggested that the operator "'explore' the possibility of using a dietary consultant." When the state substantiated a complaint that two residents fell and broke their bones, it asked the facility to "'re-evaluate your ability to meet these tenants' needs.'" When residents complained that they were unable to communicate with their non-English-speaking caregivers, the Department suggested that the residents learn Spanish.(32)

Two days after the Des Moines Register inquired about the lack of enforcement against an assisted living facility where two residents died, Governor Tom Vilsack fired the state official responsible for oversight of the assisted living industry.(33) He transferred responsibility for complaint investigations and surveys of assisted living facilities from the Department of Elder Affairs to the Department of Inspections and Appeals, the survey and certification agency that regulates nursing homes.(34) Governor Vilsack explained the transfer of authority: "'The Department of Inspections and appeals is experienced in working with vulnerable populations, has trained and experienced investigators, and will respond to complaints in a timely fashion.'"(35)

Conclusion

The recycled arguments of the assisted living industry ring hollow with anyone who has watched the nursing home industry's efforts over the years to avoid meaningful public oversight and accountability. The arguments are the same, the providers are the same (many nursing home corporations, in particular, have moved into assisted living),(36) and the residents are increasingly the same.(37)

With lax or nonexistent oversight of assisted living, enforcement is left to criminal law and tort litigation. While these areas of law are increasingly focused on assisted living,(38) advocates for residents of assisted living must insist on an effective regulatory structure that works to prevent bad outcomes from occurring.

1. U.S. Senate Special Committee on Aging, Shopping for Assisted Living: What Consumers Need to Make the Best Buy (Apr. 26, 1999).

2. U.S. Senate Special Committee on Aging, Assisted Living in the 21st Century: Examining Its Role in the Continuum of Care (Apr. 26, 2001).

3. U.S. Senate Special Committee on Aging, Forum, Assisted Living Reexamined: Developing Policy and Practices to Ensure Quality Care (Apr. 16, 2002) (Committee Print 107-24) (Opening statements of Senators John Breaux and Larry E. Craig discuss the Assisted Living Workgroup).

4. In 1976, Congress enacted legislation in an effort to oversee the board and care industry, which the federal government did not directly reimburse for care. The Keys Amendment (§1616(d) of the Social Security Act) required the Social Security Administration to reduce SSI checks to beneficiaries who lived in board and care facilities not regulated by the state. This odd sanction, which penalized beneficiaries for noncompliance, rather than states or facilities, has rarely been enforced. General Accounting Office, Insufficient Assurances that Residents' Needs Are Identified and Met (1989).

5. Newspaper articles about poor care and conditions in assisted living facilities are beginning to rival those about nursing homes. See, e.g., Henry Frederick, "Nursing home staffer sentenced for raping elderly disabled woman," Daytona Beach News Journal (Jan. 7, 2003), http://www.news-journal.com/cgi-bin/printtext.pl; "Vista home agrees to pay $1 million to patient's family," AP Newswires (Dec. 28, 2002) (living and dead ants found in the mouth, eyes, and hair of resident, who died a week later; facility agreed to pay $1 million to family); Larry King, "Five charged in death at care facility," The Philadelphia Inquirer (Oct. 9, 2002), http://www.philly.com/mld/inquirer/4242856.htm?template=contentModules/printstory.jsp. (five staff members, including two registered nurses and the administrator, were charged with death of a resident, who was kicked or stomped by aide and denied health care for a week).

6. By October 2002, Medicaid programs in 41 states paid for care for 102,00 residents in assisted living. Robert Mollica, National Academy for State Health Policy, State Assisted Living Policy 2000, Executive Summary (Dec. 2002), http://www.nashp.org/Files/ltc_15_AL_2002.pdf. In June 1998, Mollica had reported that only 20 states used Medicaid to pay for services in assisted living and that eight additional states covered services in board-and-care facilities that are sometimes described as assisted living. Robert L. Mollica, National Academy for State Health Policy, State Assisted Living Policy: 1998, 43 (Jun. 1998). Mollica reports that "the number of assisted living residents supported by Medicaid grew 70% between 2000 and 2002, from 60,000 to 102,000." Robert Mollica, "Coordinating Services Across the Continuum of Health, Housing, and Supportive Services," Journal of Aging and Health, Vol. 15, No. 1, 165, 172 (Feb. 2003).

7. Paul R. Willging, Ph.D., President and CEO, Assisted Living Federation of America ("Expert Opinion" in SNALFNEWS, Oct. 21, 2002), http://www.snalfnews.com/ExpertOpinion.cfm?id=113. See also ALFA's Statement of Regulatory Principles (calling for the regulatory system to be based on "service outcomes" and "customer satisfaction"), http://www.alfa.org/public/articles/index.cfm?cat=67. See also the American Association of Homes and Services to the Aging, Issue Brief, Assisted Living: Choice, Flexibility and Affordability (Mar. 2002), http://www.aahsa.org/public/ASSISTED%20LIVING-CHOICE%20FLEXIBILITY%20AND%20AFFORDABILITY.pdf and

8. See Testimony of Judith A. Ryan on behalf of the American Health Care Association before the House Committee on Ways and Means, Subcommittee on Health (Feb. 13, 2003) (calling for expanded waiver authority under Medicare to test alternative survey protocols) and American Health Care Association, "AHCA to House Ways and Means Committee: Regulatory Oversight Of Long Term Care Not Keeping Up With Patient Needs. In Some Instances, Existing System Impedes Quality Improvement, Hurts Patients; System Can Be Modernized, Improved by Establishing More Accountable Regulatory Process" (News Release, Feb. 13, 2003) (calling for changes in the regulatory process to provide "an interactive system of quality improvement"), http://www.ahca.org/news/nr030213.htm.

9. The 1987 reform law established an enforcement system to respond quickly and appropriately to cited deficiencies with a broad range of specified intermediate sanctions. 42 U.S.C. §§1395i-3(h), 1396r(h), Medicare and Medicaid, respectively.

10. A statewide class of nursing home residents argued in the mid 1970s that the federal nursing home regulatory system needed to evaluate actual outcomes of care, not just facilities' capacity to provide good care. Estate of Smith v. Heckler, 747 F.2d 583 (10th Cir. 1984).

11. Paul R. Willging, Ph.D., President and CEO, Assisted Living Federation of America ("Expert Opinion" in SNALFNEWS, Oct. 21, 2002), http://www.snalfnews.com/ExpertOpinion.cfm?id=113.

12. Avedis Donabedian, "Commentary on some studies of the quality of care," Health Care Financing Rev. 75, 77 (Annual Supplement 1987). See also Fitzhugh Mullan, "Interview: A Founder of Quality Assessment Encounters A Troubled System Firsthand; Shortly before his death, Avedis Donabedian talked with Fitzhugh Mullan about health care and the management of his own cancer care," Health Affairs 137, 139 (Jan./Feb. 2001) (discussing "failure to realize the relationship between what I have called structure, which can be called system design, and system performance").

13. William D. Spector, "et al, Using Outcomes to Make Inferences about Nursing Home Quality," Evaluation & The Health Professions, Vol. 21, No. 3, pp. 291-315 (Sep. 1998).

14. California Association of Health Facilities v. Department of Health Services, 16 Cal.4th 284, 940 P.2d 323, 65 Cal.Rptr.2d 872, 885 (1997) ("'To suggest, . . . , that individual patients assume responsibility for enforcement of the Act by way of a "threat of personal injury lawsuits" . . . is to abrogate the most basic and traditional police power of the state - the oversight of public health and safety. . . . Relying on the threat of a personal injury lawsuit to impose compliance with health and safety regulations defeats the very purpose of the statutory scheme, i.e., preventing injury from occurring . . .,'" quoting an earlier Supreme Court decision).

15. While it is easy to train people to use the new vocabulary of "customers," Donabedian reported that the new vocabulary does not change the "culture or the awareness of the clinicians." In fact, in his view, nothing may actually change but the words. Fitzhugh Mullan, "Interview: A Founder of Quality Assessment Encounters A Troubled System Firsthand; Shortly before his death, Avedis Donabedian talked with Fitzhugh Mullan about health care and the management of his own cancer care," Health Affairs 137, 139 (Jan./Feb. 2001).

16. Maria A. Friedman, "Issues in Measuring and Improving Health Care Quality," Health Care Financing Rev. 1, 6 (Vol. 16, No. 4) (Summer 1995). Donabedian describes consumers' ability to provide information about nontechnical aspects of care. Avedis Donabedian, "Commentary on some studies of the quality of care," Health Care Financing Rev. 75, 77 (Annual Supplement 1987).

17. Nicholas G. Castle, et al., "Quality Improvement in Nursing Homes," Health Care Management: State of the Art Reviews 1 (Vol. 3, No. 1) (Nov. 1996).

18. Office of the Inspector General, HMO Customer Satisfaction Surveys 7, 9, OEI-02-9400360 (Mar. 1996) (reporting that survey instruments used by health maintenance organizations "may mask problems and inflate satisfaction with managed care plan" and that HMOs use the results "as much for marketing as for quality improvement.")

In Iowa, the state sent surveys to residents and staff identified by the facilities. In some instances, the facility sent the state photocopies of surveys, not the original documents. Clark Kauffman, "Regulation system works, Elder Affairs officials say," Des Moines Register (Jan. 14, 2002).

19. Paul R. Willging, Ph.D. ("Expert Opinion," SNALF, Apr. 22, 2002), http://www.snalf.com/mysnalf/featured_article.cfm?cntntID=4754.

20. Weaknesses in the public regulatory system for nursing homes were documented by a series of twelve reports and testimony by the General Accounting Office between July 1998 and December 2000. See GAO/HEHS-00-197, Nursing Homes: Sustained Efforts Are Essential to Realize Potential of the Quality Initiatives 51 (Sep. 2000); GAO/HEHS-00-27, Nursing Homes: HCFA Should Strengthen Its Oversight of State Agencies to Better Ensure Quality Care (Nov. 1999); GAO/HEHS-00-6, Nursing Home Care: Enhanced HCFA Oversight of State Programs Would Better Ensure Quality (Nov. 1999); GAO/HEHS-99-154R, Nursing Home Oversight: Industry Examples Do Not Demonstrate that Regulatory Actions Were Unreasonable (Aug. 1999); GAO/T-HEHS-99-155, Nursing Homes: HCFA Initiatives to Improve Care are Under Way but Will Require Continued Commitment (Jun. 1999); GAO/HEHS-99-157, Nursing Homes: Proposal to Enhance Oversight of Poorly Performing Homes Has Merit (Jun. 1999); GAO/T-HEHS-99-146, Nursing Homes: Complaint Investigation Processes in Maryland (Jun. 1999); GAO/HEHS-99-80, Nursing Homes: Complaint Investigation Processes Often Inadequate to Protect Residents (Mar. 1999); GAO/T-HEHS-99-89, Nursing Homes: Stronger Complaint and Enforcement Practices Needed to Better Ensure Adequate Care (Mar. 1999); GAO/HEHS-99-46, Nursing Homes: Additional Steps Needed to Strengthen Enforcement of Federal Quality Standards (Mar. 1999); GAO/HEHS-98-202, California Nursing Homes: Care Problems Persist Despite Federal and State Oversight (Jul. 1998); GAO/T-HEHS-98-219, California Nursing Homes: Federal and State Oversight Inadequate to Protect Residents in Homes With Serious Care Violations (Jul. 1998)). The Department of Health and Human Services' Office of the Inspector General issued several reports, including OEI-02-98-00330, Nursing Home Survey and Certification: Overall Capacity (Mar. 1999); OEI-0298-00331, Nursing Home Survey and Certification: Deficiency Trends (Mar. 1999). The Department of Health and Human Services' issued its own critical analysis: Report to Congress: Study of Private Accreditation (Deeming) of Nursing Homes, Regulatory Incentives and Non-Regulatory Initiatives, and Effectiveness of the Survey and Certification System (Jul. 1998).

During this same period, the federal enforcement system was also the subject of a series of four hearings before the Senate Special Committee on Aging: The Nursing Home Initiative: A Two-Year Progress Report (Sept.2000); The Nursing Home Initiative: Results at Year One (June 1999); Betrayal: Residents at Risk? Weaknesses Persist in Nursing Home Complaint Investigation and Enforcement (Mar. 1999); and The Quality of Care in California Nursing Homes (July 1998).

21. Mary Zahn and Tom Held, "Caring for the Elderly, Disabled. The Series: Overwhelmed and Broken Down," Milwaukee Journal Sentinel (Aug. 25-27, 2001). The series reported on the newspaper's six-month examination of long-term care and included "Lapses in care lead to deaths, records show. Hundreds of residents are at risk in assisted living centers, where too few staffers struggle to care for sicker people" (Aug. 25, 2001) (describing more than two dozen deaths between 1997 and 2000 related to caregiving; including a 90-year old resident who wandered outside in 15 degree weather and was found dead in a snowbank, dressed in nightgown; an 80-year old woman who had pneumonia, dehydration, and nine pressure sores and died at a hospital).

22. Joint Legislative Audit Committee, An Evaluation: Regulation of Nursing Homes and Assisted Living Facilities, Department of Health and Family Services, Report # 02-21 (Dec. 2002), Letter from State Auditor Janice Mueller to Senator Gary R. George and Representative Joseph K. Leibham, Co-chairpersons, Joint Legislative Audit Committee (Dec. 13, 2002).

23. Id.

24. Id. 21.

25. Id. 5, 34.

26. Id. 5, 37.

27. ALFA's president and CEO Paul R. Willging described Iowa's system as a model for other states. Paul R. Willging, Ph.D. ("Expert Opinion," SNALF, Apr. 22, 2002), http://www.snalf.com/mysnalf/featured_article.cfm?cntntID=4754.

28. Clark Kaufmann, "Few penalties imposed on assisted living sites," Des Moines Register (Jan. 13, 2002); "Elder Affairs requests seal on center records," Des Moines Register (Jan. 15, 2002).

29. Clark Kaufmann, "Few penalties imposed on assisted living sites," Des Moines Register (Jan. 13, 2002).

30. Id.

31. Id.

32. Id.

33. Clark Kauffman, "Vilsack fires state official over lack of action against assisted-living home," Des Moines Register (Apr. 13, 2002), http://desmoinesregister.com/news/stories/c4780934/17898227.html.

34. Clark Kauffman, "Governor relieves agency of key duties," Des Moines Register (Apr. 19, 2002).

35. Id.

36. The 30 largest assisted living chains include the nursing home chains Manor Care, Genesis Health Ventures, and Extendicare Health Services. "Top 30 Assisted Living Chains. Assisted Living Sector Continues to Expand," American Health Care Association, Provider, 39, (Aug. 2002), http://www.providermagazine.com/pdf/top30-al-08-2002.pdf

37. Residents placed in assisted living through Medicaid waivers are eligible for Medicaid coverage of their care only if they need a nursing home level of care. 42 U.S.C. §1396a(a)(10)(ii)(VI). By definition, these assisted living residents are nursing home residents.

As assisted living residents have stayed in their assisted living facilities as their health care needs have increased - living the industry's early promise that people could "age in place" - they look increasingly like nursing home residents in their care needs.

This view is not disputed by the assisted living industry. Paul Willging, ALFA's CEO, explained his description of assisted living before he became ALFA's CEO:

I've gotten in trouble in the past for saying that assisted living is a nursing home with a chandelier. It's not meant to be demeaning of assisted living; rather, it's meant to focus on what is the essential distinction between nursing homes and assisted living. And that distinction is not based on differences among residents. When I say it is a nursing home, I mean that only in the sense of the people it's caring for. If you look at the residents, they're the same people we had in ICFs 15 or 20 years ago; look to the level of ADL dependencies, to the percentage of cognitively impaired residents. So in that respect, assisted living looks very much like yesterday's nursing home.

Paul R. Willging, Ph.D. ("Expert Opinion," SNALF, Apr. 22, 2002), http://www.snalf.com/mysnalf/featured_article.cfm?cntntID=4754.

38. See cases described in note 5, supra.

Note: This piece also appears in its entirety in the NAELA Quarterly, Spring 2003, Vol. 16, No. 2


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