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Carole Herman, Founder President Foundation Aiding the Elderly (FATE)People ask me why advocates are needed. People in nursing homes are invisible to most of us. If Americans are uneasy dealing with issues surrounding aging and death, we are most uncomfortable with the institution of the nursing home. It is often viewed as a warehouse for the old and ill, and media reports over the years about the dreary conditions inside have further denigrated its reputation in the public's mind.

Not surprisingly, the thrust of social service and philanthropic initiatives in recent years has been to develop ways to keep the elderly out of nursing homes, through respite care, home health care, adult day care, homemaker services, and other initiatives aimed at keeping the elderly in their own homes and in the community. Those are certainly important options for the elderly; most individuals want to remain in their own homes and be independent as long as possible.

But, behind those worthy and innovative projects has been a desire to delay or avoid entirely the problem of nursing homes, to hope that most of the elderly can live out their days with a supportive family caregiver or social network and without institutional care. Given the increasing number of the very old and disabled and the limited number of available caregivers in the home and the larger society, this does not seem possible. The reality is that the number of nursing homes and those who spend time in them continues to increase.

Most people do not want to know what goes on in "those places", until she or he has a relative in a nursing home. And then, as the critical link between the nursing home patient and the larger world, the relatives often feel ignorant about and intimidated by the place where an ailing mother or aged brother/sister now lives. In spite of their interest and concern, the family members are still seen as outsiders and often as nuisances by those who work in the nursing home.

About 20 to 30 percent of all Americans can expect during their lifetime to spend some time in a nursing home. Currently, close to 2 million Americans, more than two-thirds of them in a long term care facility with the number expected to grow dramatically as the population continues to age.

Partly in response to government reports about substandard care in many nursing home and by aggressive advocates, the government instituted reforms designed to regulate the practices. Today we have in place a number of resources to educate families of nursing home patients and to protect those residents: federal and state agencies to regulate and monitor facilities and their practices; area agencies on aging to help families fund nursing homes in their communities and most critically, local publicly-funded ombudsmen to hear and act on complaints about the care provided residents, about negligence or abuse in these facilities.

The ombudsman program, funded primarily by the Older American's Act with some monies coming from state and local government agencies, emerged in the 1970's in response to growing public awareness of the need for stronger consumer protection activities in nursing homes in the form of advocates. While the regulator's role is to apply laws and regulations, ombudsmen help identify and resolve problems on behalf of residents in order to improve their over-all well-being. The Ombudsman Program is to work along side other programs or groups who are engaged in improving the quality of care of the nursing home patient. The program was designed to encompass both active advocacy and representation of resident's interests over third parties involved in nursing homes, i.e., the operators.

In 1986, the Institute of Medicine reported that successful ombudsman programs had demonstrated their "considerable value" for the residents of nursing homes; however, there were too few successful programs and little hope for change under current government regulations. In 1995, the Institute of Medicine again conducted an evaluation of the program and determined that the program contained too many conflicts of interest, which were sufficient to warrant greater vigilance and a broader array of tactics to prevent such conflicts. The report indicated that the ombudsman, by federal statue, is required to speak out against government laws and since state ombudsmen operate in a politically charged environment (most ombudsman are state employees), it is not surprising, therefore, that conflicts occur. As well, the report focused on the fact that staffing resources were minimal to inadequate and did not keep with the intent of the program.

Given the constraints and limitations shackling the ombudsman programs cited in both Institute of Medicine Reports, it is not hard to understand why they often fail to monitor facilities effectively and serve all the families of the increasing nursing home population. It is also not hard to understand why some advocacy groups for nursing home residents have chosen to be designated ombudsman programs, willing to sacrifice their independence for the financial resources, stability and official recognition that come with government sponsorship.

Other groups have avoided becoming part of the ombudsman program, noting the way its constraints could limit their work and effectiveness. Their insights have proven correct. Several years ago, a two-year national study of advocacy organizations for nursing home residents conducted by the Department of Gerontology at the University of South Florida and funded by the Retirement Research Foundation concluded that groups that were not part of the ombudsman program had more active members and volunteers. This study found that non-ombudsman programs possess somewhat greater flexibility and freedom to engage in more rigorous advocacy efforts such as challenging legislative and regulatory actions. Private groups appear to be more aggressive in publicizing the names of deficient nursing homes and engaging in confrontational activities. The conclusion reached is that government run ombudsman programs do not have the same independence as do private groups.

Some of these groups distribute newsletters about conditions in area nursing homes or statewide initiatives to reform the facilities; some testify at public hearings about the quality of nursing home care; some conduct surveys of area facilities. Others simply respond to concerns of those with relatives in nursing homes. All of us feel overwhelmed by the task of changing the lives of patients in nursing homes without a broader base of concern and without the support of those whose relatives are the residents there. Members of these private groups communicate together and share their dismay about the lack of improvements in nursing home care in spite of government attempts for reform. The public perception is that - with new laws and regulations in place-in spite of few deviations from the proper course, the long-term care industry provides good care and is being adequately monitored by local, state and federal agencies. This is an unfortunate misperception, because it lulls the public and especially the relatives of nursing home patients into believing that they may relax their vigilance, that their role in improving the lives of those in facilities has been reduced, that governmental efforts have been successful and are continuing a real false sense of security.

Although nursing home care may be improving in some facilities, in most little has changed as a result of governmental measures, whether those are new laws or regulations. This lack of reform is due not so much to the failures of government action as to the failure of the nursing home population and their relatives to become a force and develop a voice about their concerns and recommendations for change. Because the typical American is more familiar with the cares and concerns of their busy lives than with the nearby nursing home, he or she is not ready to respond as an informed citizen when new laws or regulations for long-term care facilities are proposed, or when reports of poor care or abuse in such places are reported by the media.

The nursing home residents themselves cannot be expected to become an active force; in large part, they are the elderly and confined by physical and mental infirmities to a limited role. However, the relatives who visit them, as well as a facility's corps of volunteers and others in the community with an interest in the welfare of those elderly may not be conscious of the important role they play in maintaining the quality of life in the facility.

Our experience has been that most of the concerned relatives, themselves aging adults, will lose their interest in the issue of nursing homes once their relative no longer is a resident; however, a few persons who have been deeply touched by their experiences with nursing home patients will maintain their interest in reforming and advocacy.

What we in the advocacy field have learned is that because of the existing environment surrounding nursing homes, our work and the crying need for it will never end. To continue to advocate for our most vulnerable citizens, our parents, grandparents, aunts, uncles and brothers and sisters who cannot advocate for themselves is our mission, our duty and our calling.

Carole Herman, Founder/President
Foundation Aiding The Elderly

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