BLACK BOX OF HOME CARE QUALITY TUESDAY, JULY 29, 1986 HOUSE OF REPRESENTATIVES, The committee met, pursuant to notice at 2:15 p.m., in room 2318, Rayburn House Office Building, Hon. Edward R. Roybal (chairman of the committee) presiding. Members present: Representatives Roybal, Bonker, Synar, Volkmer, Stallings, Rinaldo, Regula, Jeffords, Wortley, Courter, Schneider, McCain, Saxton, Bentley, Fawell, Meyers, Henry, and Schuette. Staff present: Gary Christopherson, professional staff member; Austin Hogan, communications director; Nancy Smith, professional staff member; Carolyn Griffith, staff assistant; Valerie Batza, staff assistant; Marvin Kaiser, Kellogg Fellow; April Aaronson, Eric R. Anderson, and Victoria Windus, interns; Joseph Fredericks, deputy minority staff director; and Mary Polasik, minority executive secretary. OPENING STATEMENT OF CHAIRMAN EDWARD R. ROYBAL The CHAIRMAN. The committee will come to order. Ladies and gentlemen, the purpose of today's hearing is to highlight how little is known about the quality of care provided in the home and to draw public attention to the inadequacy of our current system of standards and quality assurance when it comes to home health care and supportive services. Home care services generally enjoy a good reputation and are key to keeping dependent persons of all ages living on their own or with their families in the community. Yet we hear of people, such as one of our witnesses today, who have problems with unreliable aides and who question the quality of care that they, or loved ones, receive. In some cases, they suffer from outright neglect and abuse. Most frightening of all is the fact that we simply have no way of knowing how widespread these problems are. Nor are we prepared to adequately protect the vulnerable person whose care in the home setting is largely out of the reach of public or professional scrutiny. At this time, I wish to release an important report prepared by the American Bar Association that documents the lack of data on home care quality and the inadequacy of the current system of standards and quality assurance. I commend and thank the ABA and Mr. Charles Sabatino, the report's author, for their fine work and submit a summary of their report for the record. (1) Is there objection? Without objection, this summary will appear at this point in the record. [A summary of the report, "The 'Black Box' of Home Care Quality," presented by the chairman of the Select Committee on Aging, and prepared by the American Bar Association; Comm. Pub. No. 99-573, August 1986, follows:] CHAIRMAN'S FOREWORD Home core services, in the broadest sense, generally enjoy a good reputation and are key to the goal of giving dependent persons the opportunity to live on their own or with their families in the community. Yet, we hear anecdotal accounts from home care consumers and providers of unreliable and poorly trained aides, of questionable care techniques, and, in some instances, of abuse and neglect. What is most disturbing is that we simply do not know how serious or widespread these problems of home care quality are. Nor do we have the means to adequately protect one of the most vulnerable of all consumer groups persons receiving care in the home, away from public and professional eyes. In these respects, the quality of care in the home is a "black box" a virtual unknown. The decision to release this report, prepared by the American Bar Association (ABA), is a statement of the Committee's concern for the well-being of persons receiving home care and our intent to fortify the largely positive regard home care now enjoys. This concern is only heightened by the rapid increase in the use of home care services by our aging society, by the numbers and varieties of providers entering the home care market, by the growing public and private investment in home care, and by the impact of recent cost containment measures on access to and quality of home care. The ABA is to be commended for their thorough and timely review of home care quality and the current system of standards and monitoring. The report is a critical first step in documenting the inadequacy of the present quality assurance system for home care and in recommending needed reforms. As such, it is a vital contribution to public policy and to public safety. With this report and its recommendations in hand, it is now the responsibility of federal, state and local governments and the private sector to work cooperatively to create a system of quality assurance that ensures that all care provided in the home is of the highest quality possible and delivered in the best interests of the consumer and their family. The Committee extends its appreciation to the ABA, to the report's author, Mr. Charles Sabatino and to the Staff Director of the ABA's Commission on Legal Problems of the Elderly, Ms. Nancy Coleman, for their fine work and cooperation in releasing this report. Thanks are also extended to Dr. Marvin Kaiser of Kansas State University for his assistance in the Committee's efforts to ensure the quality of care in the home. Edward R. Roybal Chairman August, 1986 CHAPTER I INTRODUCTION: THE PROBLEM How do consumers of home care services know they are getting the kind and quality of care they should be getting? The answer is simple, they have no way of knowing. The quality of care being provided to older and disabled persons in their home s today is a virtual "black box" an unknown both to the consumer and to policy-makers. Why is this a concern? First and foremost is the vulnerability of persons receiving health care and personal support services in the home setting. Consumers in need of home care and their families face an utterly confusing array of changing services, a dearth of information on which to base expectations, and little control over what happens. Even more significant is the in-home location of services that makes their actual delivery essentially invisible and, therefore, largely beyond the easy reach of public or professional scrutiny.. - Added to this is the fact that the need for home care and the number and variety of providers in the system have mushroomed in recent years. It is estimated that about 8 million persons in the United States needed assistance with personal care in 1985 5.2 million of them were over age 65.1121 Every month since 1960, an average of 149,000 persons have joined the ranks of the elderly. The total age 65+ population doubled between 1950 and 1980 and is expected double again by 2020.3/ The kinds home care services needed by this bur geoning population run the gamu t from essentially non-medical support services, such as homemaker and chore services, to traditional nursing-based home health services, to newer, rapidly emerging hi-tech services, such as kidney dialysis, sophisticated forms of artificial nutrition, and cancer chemotherapy. These latter services were unimaginable in home care just a few years ago. to of Looking at the growth of the home care industry, the number of home health agencies certified under Medicare increased by more than 50 percent between 1982 and 1984; reaching a total of 5,237 agencies by the. end of. 1984.4/ The greatest growth in occurred owned agencies with their number increasing 300 percent during that period. Proprietaries now make up more than 30 percent of Medicare certified agencies, up from less than 6 percent in 1979.51 investor ucts and services grossed an estimated $9 billion in 1985, with expansion to $16 billion projected for 1990; 70 percent of the total is for services.6/ In 1982 Medicare spent $1.3 billion and Medicaid spent $495 million on home health. Other federal Programs spent an estimated $950 milWhile constituting only about 3 percent of the overall Medicare budget, home health expenditures have grown dram- atically under Medicare at an annual rate of 34. . percent between 1974 and 1980. Since 1980, Medicare health ex - penditures have doubled from $772 million to $1.5 billion in 1983.8/ home Despite this growing need for home care in the context of a growing industry, the government and consumers simply do not know what they are getting for their money, both in terms of the nature of services and, more importantly, in the quality of services. Neither public nor private sector home care services operate under truly effective quality standards, monitoring mechanisms, or enforcement mechanisms. As a result, there is little accountability for quality under present systems and little knowledge about the existence or extent of quality problems. On the one hand, home care services bring enhanced opportunities for the elderly to live longer and independently in their communities. Yet, they also bring enhanced risks of poor care, unreliable services and outright neglect, abuse and exploitation. Anecdotal reports leave little doubt that all these problems exist but to what degree is unknown. Hard data simply are not available. What really goes on in the beneficiary's home day-by-day is unseen. The unfortunate truth is that quality concerns have taken a back seat today to a more visible crisis in costs and availability of the public. Budget deficits and public program cuts have pushed funding issues to the fore, despite the fact that these s ame cuts have a direct impact on the quality of care delivered. care. care to now To date, home-based care has been relatively free from the worst case, patient abuse horror stories that have periodically rocked institutional health Yet the home care industry is in a position not unlike that of nursing home s twenty years ago when a period of unprecedented growth began. Some of lessons learned in twenty tempting to years of the at ensure quality in nursing home s can be heeded now in home care bef |