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Vulnerable and Forgotten: The Limits of Advocacy
Words by Tom Wade
Fifty years ago, residents in long term care—mostly nursing homes at the time—faced an inordinate risk of dying from food poisoning and fires. Since then these risks have lessened, but the quality of life for people living in these places continues to be lacking. What was true then is true now: when we become infirm and aged and dependent, our value diminishes. Even though we, as family members, continue to love our debilitated relatives, giving them time and attention; we, as a society, ignore them. And in doing so, we unknowingly take from them much of what contributes to a worthwhile existence.
On one recent nursing home visit, I met a woman whose roommate has dementia. She pointed to the sheet on her companion’s bed, which had been bloody since the previous Sunday; apparently staff were too busy to change it. Another resident with a broken leg, necessitating assistance getting out of bed, going to the bathroom and so forth, said the assistants treated her roughly and ridiculed her by saying she had a “fat butt.” Then I ran into a woman whose mother was residing in a room with an Alzheimer’s victim. She was anxious because this lady had hit her mother, a frail woman in her eighties, causing her concern about her parent’s safety. Although no was in danger of dying, three lives were degraded. These episodes reveal more than lack of compassion, they reveal contempt for vulnerable persons dependent on a malfunctioning system of care.
I was no different from most others in believing if these people aren’t suffering physical pain then though unfortunate, their situations are bearable, and given the vagaries of life, acceptable. A modicum of reflection, however, reveals the cruelty in such an attitude. In an attempt to understand their plight, a simple question comes to mind: what is it I want, from the commonplace to the meaningful, during my time on Earth? Fundamentally, I want to be comfortable. Comfort entails being warm in the winter and cool in the summer; food that is edible, tasty, and good for me; having a place to sleep that’s quiet and dark (with an aging prostate, having a bathroom close by is a necessity); and being secure from violence and indignities. Those are the physical essentials, but there are emotional needs nearly as imperative. I can’t function without companionship—both kin and friends—having someone to talk to, to confide in, and if necessary, to express my fears to. As do most people I yearn to be reassured, encouraged, flattered. Additionally, notwithstanding having satisfied these requisites, if I’m to avoid boredom and possibly despair, I have to be involved in tasks that are productive or helpful to others. And from such labors comes gratification. Luckily, my basic demands are routinely fulfilled and I’ve been engaged in useful endeavors. As a consequence, I’m able to strike out in new directions, to explore avenues leading to a better understanding of the ideas, people, relationships and objects I value. If I had to exist without the comfort of food I like, warmth, and security, or if I was alone or around people who think little of me or whom I disdain, I would be a forlorn, lost soul, not truly human. Yet sadly, the reality for so many of the people I encounter in long term care facilities is material and psychological impoverishment, which makes for mean lives without the remotest chance of having higher order experiences.
I’ve only recently made these observations, my laggardness due to being preoccupied with my own worries and because I mirror many of the biases of modern society, especially a persistent insensitivity. While humane values are a part of our culture, we tend to be apathetic. We don’t want to look at old folks in unpleasant circumstances. It’s disquieting. We assume those with infirmities and advanced years have no desire to thrive; they only desire to live from one breath to another. And our aversion to the elderly shelters us from distressing facts about the way we treat them. For example, there are approximately 2.1 million older adults known to be the victims of exploitation, neglect or abuse; and authorities estimate that for every reported case there are up five cases unreported. That’s ten million instances of abuse, neglect, and exploitation of our senior citizens each year. Alarming statistics indeed, but they are only indicative of intentional harm. We also inflict unintentional harm because we lack not just compassion but fortitude, the fortitude to peer into the eyes of people who unsettle us. We forget they brought us into being. If we had the courage to look at them and remember what they have done for us, we wouldn’t allow such deplorable treatment.
In this country, there are over 15,700 nursing homes with 1.7 million beds; and almost 53,000 board and care (often called personal care) homes with 1.2 million beds. In 2008, 3.2 million people lived in nursing homes at least part of the year; and 900,000 lived in assisted living facilities (a category that includes most but not necessarily all board and care homes). While some are younger people with disabilities, a large majority of those in nursing facilities and personal care homes are elderly. According to the National Center on Elder Abuse, six out of seven residents in long term care facilities are 65 or older and two thirds are female. In the future these numbers will be driven higher by aging baby boomers, pushing the portion of those over age 65 in the general populace from today’s 14 percent to around 20 percent over the next few decades. As an indication of the extent and rapidity of the impact, the 45 to 64 year old cohort has grown by 24 percent between 2002 to 2010, signaling a sizable jump in the over 65 group in the intermediate future.
Institutionalized long term care took off with the advent of the Medicare and Medicaid (health insurance for the poor) programs in the mid-1960s, which made public funding available for the first time. The financing, however, called for few if any resident safeguards, and by the latter part of that decade and into the early years of the next, there was a clamor to rectify the “abuse, neglect, and substandard conditions in nursing homes.” Two highly visible tragedies occurred in 1970. In February, 32 of the 46 patients of a Marietta, Ohio nursing home perished from asphyxiation when the facility’s carpeting caught fire. In August, 25 persons in a Baltimore residence died from salmonella food poisoning “after delays in seeking medical help.” Following the initial reports of the outbreak, the owner in a Washington Post “telephone interview . . . complained about the focus of the news media on the 12 deaths over the weekend, saying is it really that big?” These stories and others highlighted the abysmal care and apparent greed in the nursing home industry, thus creating a climate to institute federal regulations specifying minimal care requirements. A presidential directive in 1971 implemented measures for protecting the inhabitants of these facilities, which encompassed standards, support for inspectors, and establishing state ombudsman units.
The purpose of the ombudsman program was, and remains, to be an advocate for residents of long term care facilities. After a three year demonstration period in which complaints were handled in one to three central locations within the participating states, it was decided “sub-state programs” would be more responsive, and so starting in 1975 states began getting funds for a decentralized structure. Three years later, programs were mandated in all states, and in 1981 their scope was broadened to include board and care homes. The 1978 Older Americans Act declared ombudsmen, in addition to investigating complaints, are to: bolster community awareness and support; recruit volunteers; and monitor applicable laws and policies. In 2012, there were 1,200 full time positions and 9,000 volunteers.
As noted above, long term care is provided in nursing homes and personal care (or board and care) homes. Individuals in nursing homes receive medical services or short term rehabilitation. In my experience these enterprises typically have from 50 to a couple hundred beds. The care isn’t covered by private health insurance plans, though some do have part of the costs compensated through long term care policies; a small number of occupants pay out of their own pocket but a majority is supported by Medicaid. Those getting Medicaid qualify only if almost all of their resources are depleted, which requires selling their houses and spending most of their savings. For rehab patients, Medicare picks up the whole tab for up to twenty days and part of it for up to a hundred days.
Personal care homes provide assistance to those who aren’t in need of around the clock medical supervision. These facilities provide “watchful oversight” such as help with taking medications, bathing, getting dressed, preparing meals, and going shopping; but unlike nursing homes, they don’t care for people requiring continuous medical attention. In Georgia they fall into two sub-categories—assisted living and personal care. I gained first-hand knowledge of assisted living establishments when, after my dad had a stroke, my parents lived in one for about seven years. These enterprises mainly cater to middle and upper middle class tenants who have their own apartments—no shared rooms—with kitchens; the common areas, in every place I’ve seen, are tastefully appointed. They must serve at least twenty-five persons, with most housing in the range of fifty to sixty residents, and a few caring for a hundred or more.
The personal care homes subcategory reflects the other side of the class-divide. In contrast to assisted living, those dwelling in personal care homes are of lesser means, most living solely off of Social Security old age or disability benefits, which usually go directly to the home to pay for room, board, and assistance, with a small, fifty dollar, allowance held for the resident to purchase personal items. The suburban facilities in the Atlanta area are most often in thirty to fifty year old ranch houses in which residents live in spartan settings. These dwellings usually have between two and ten beds; and though some are corporately owned, many are mom and pop operations. While not common, there are personal care homes operating in apartment units, typically in low end complexes or those for senior citizens. In the city, these businesses are often located in older frame houses. Inhabitants of these humble abodes often share a room with one or sometimes two other persons.
On a little-traveled city street in the shadow of an interstate highway, in an old house with high ceilings, furnished with cheap, flimsy chairs, a couple of worn couches, and a large screen television loudly spewing religious programming, is a personal care home sheltering eleven persons. Sharing a room are two men, one in his 60s and the other a decade or so younger, in a space barely big enough for two single beds and a couple of chests of drawers. I’ve been there two or three times, and the scene is always the same. The older one, with longish silver hair and a mustache that almost completely covers his mouth, is sitting on his bed watching a small television on his bureau only two feet away. He has no grievances—the staff treats him fine, the food is OK. The other one is lying down on his bed in the windowless and, because he doesn’t have a light on, dark half of the room. Lying on top of his covers, his hands are clasped behind his head and his ankles are crossed. His only grievance is that he is roused too early. He doesn’t eat breakfast, it takes time away from sleeping, he says, mocking my earnestness.
Twenty miles away in a five bedroom ranch (two carved out of space that formerly was a garage) in a working class suburb, a 94 year old woman passes her time in a cluttered bedroom. She’s articulate but nearly deaf, and she has trouble standing on her own. She says she loves to go outside but her caregivers won’t take her out of the house. When questioned about it, an aide responded they would walk with her, she only has to ask; however, she stressed this habitant is at risk for falling and must use a walker. Although she has a daughter nearby who comes once or twice a week, she’s lonely; and in spite of the presence of five other residents, her deafness effectively isolates her.
Back in the city, a thin, frail man of about 80 looks at me without moving, his blue eyes standing out in his ebony face. His gaze while unblinking isn’t intense; and I soon became aware he isn’t staring, he is just too weary to redirect his attention. He has difficulties with his bladder, so he’s frequently going to the bathroom, though he doesn’t always get there in time. Arriving at the home I sometimes detect an odor of piss, and his room always smells no matter how hard the caregiver tries to keep it clean—once urine gets in the mattress, the odor can’t be removed. He doesn’t talk other than an occasional mumble answering one of my inane, albeit sincere, questions. Initially, I found his state distasteful, yet I grew use to it. Looking into his tired eyes, I try to comprehend what he is feeling, but alas, it’s outside the limits of my empathy.
People who reside in assisted living establishments—what I view as the middle to upper middle class niche of board and care homes—are commonly in their 70s and 80s. While some have simply grown frail with age, many have lost the ability to manage their daily routines due to having had a stroke, a heart attack, cancer, or severe diabetes; and too, there are some who suffer from dementia. In a recent visit to one such place housing about forty souls, I met a man who had retired from the military a number of years past, and who expressed disappointment because “poor supervision” of the staff had left him feeling insecure and frustrated. He wouldn’t give the specifics, I can only guess it might be employees were slow answering requests for assistance, or they had made mistakes with his medications, or he simply couldn’t get along with them. He was making plans to leave by the end of the week. Next door sat a woman in a colorful apartment full of mementos and pictures of family and friends, who spoke secretively of troubles she was having with the facility, but refused to elaborate. It could be she didn’t believe I could help and she might be chastised for voicing her discontent, or maybe she was only having a bad day. I couldn’t determine if she had a serious issue, all I could do was leave a brochure with a contact number and the promise of confidentially.
I stopped by the dementia unit which had around 20 patients, all of whom were gathered around a large table singing religious songs—or more accurately a few were moving their lips, perhaps singing but I couldn’t tell because the audio system was turned on loud with the song leader’s voice drowning out everything else, including my ability to think. Those not singing were sleeping, gazing into the middle distance or eyeing me. Leaving this unit, I completed my rounds of the first floor apartments, where my uneasiness intensified. One lady who, in my untrained judgment, appeared to have a mental disorder, broke down in sobs when I asked her how she was doing; on my way out, she beseeched me to stay. Shortly after this unsettling encounter, I dropped in on a lady lying on her bed with a brace on her neck. She told me she requires help walking. A few nights previously, she turned on her call light because she had to go to the bathroom. No one came. I don’t know if her need for relief became urgent or if she’s an impatient person, but she got up on her own, went to the bathroom—and fell. She laid there for a period of time, perhaps 15 minutes, perhaps an hour, she couldn’t remember. And it was a very painful wait. She had broken her collar bone.
It would be disingenuous of me to give the impression everyone was dissatisfied and neglected in this seemingly pleasant domicile. There were several folks who were quite complimentary, noting they were treated well, the food was good, and their wishes were anticipated. It was obvious they were happy, and their accolades were sincere. Notwithstanding such commendations, the overall climate was dispiriting, especially when compared to another assisted living facility a few miles away. Like the first, this home served a clientele of better than average means, displayed the same tasteful décor, and had a dementia wing. Replying to my queries, some of its denizens complained the food was too salty or not seasoned correctly. Yet there was no criticism about staff being inattentive, dilatory, or inaccessible, except on one occasion. On that review, I heard of attendants who “don’t listen to my needs” or who “act like they can’t hear.” I found out, when discussing this with the administrator, only the day before a couple of nurse aides were terminated for not being responsive. I heard no plaints of inattentiveness on subsequent visits. In the Alzheimer’s unit, I saw staff talking to residents, interacting with them one on one, and I never witnessed a group devotional, (which is not to say they didn’t have them, but clearly these folks were involved in various pursuits and received personal attention). Sure, no place is perfect, but when it comes to care for the elderly, even the relatively well-off have to be careful about the providers they pick.
Are the people I see in my rounds neglected? Exploited? Abused? At times, I meet residents whose wishes are ignored, is that neglect? It may depend on whether they want a better selection of vegetables for dinner or if they want a room free of roaches. When relatives and outsiders like me aren’t around, no one can say with certainty what is happening to them. I can only hope they aren’t being mistreated. Considering what I know about nursing homes and personal care homes (excluding some assisted living facilities), I wouldn’t want to trade places with them. Using my quality of life criteria, most residents are minimally comfortable, at least physically: they have food, though it’s not always tasty; their domiciles are heated in the winter and, with exceptions, cooled in the summer; and they have beds for sleep and rest. What overwhelming numbers of them do not have is being recognized as adults owed a minimum of dignity. Evidence of disrespect abounds: caretakers who don’t knock when entering (even in the bathroom), rough handling, patronizing language, and for a few, the violence of being slapped, hit, or kicked. For too many, an additional hardship is the lack of a friendly ear and voice; they have no one who will listen, give encouragement, or tell jokes; no one to calm the emotional storms of disability and approaching death. I take for granted comfort and companionship, but, to varying degrees, long term care residents have neither. We haven’t abandoned them, but we do avoid them.
The complaints made by those who are in nursing homes or receiving board and care are generally similar, yet there are a couple of differences. Starting with the dissimilarities, one of the leading problems in nursing homes is conflict among the patients, including roommates. In contrast, in the board and care institutions, equipment and building hazards are among the top five issues. The rest of the leading concerns compiled by the Administration on Aging were identical for both classes of facilities: improper or inadequate discharge planning and notification; the administration of medications; and although it didn’t show up on their nursing home list, I know from my interactions, the quality, variety and choice of food is a common source of discontent in both settings. And to round out the summary of top complaints is “lack of respect for residents, poor staff attitudes.” Absence of respect, in my opinion, underlies all of the other difficulties, whether discharge planning, building hazards, administering drugs, or poor food. Nationwide, an idea of the magnitude of the discontent can be seen in these numbers for 2011: Ombudsmen provided nearly 290,000 consultations; almost 135,000 individuals opened cases in which they made over 204,000 complaints, of which 73 percent were resolved to the satisfaction of the complainant—an indication these matters weren’t frivolous.
Federal law and many state statutes mandate specific residents’ rights. They address several items in the foregoing catalog of issues such as being treated with dignity and respect, and being given advanced notice of transfers or discharge. Other rights aim to allow denizens to have a say in their care and to live in a manner permitting as much independence as feasible. Among the latter assurances are: freedom from restraints, management of their own finances if possible, the ability to file grievances without retaliation, and the confidentiality of their records, both personal and medical.
Many living in long term care settings find it hard or impossible to navigate the rules, regulations, rights and obligations governing their lives. As a volunteer, it is not uncommon for me to hear about a difficulty after which I’m asked not to say anything to administrators or employees because the resident is fearful of repercussions. Such a request can be difficult to honor, given the discomfort they may be experiencing. Yet from the perspective of a person who is helplessly dependent on others, it’s not unreasonable to anticipate adverse results from voicing discontent. Despite prohibitions against retribution, advocates or family can’t be present all the time, so caution may be justified.
Even so, consequential power is available to ombudsmen in the Older Americans Act. The Act spells out they have access to facilities and records and their files are confidential, as is the identity of complainants. These guarantees allow ombudsmen to carry out several of their most important responsibilities, namely to investigate with the aim of resolving residents’ complaints, and, if necessary, becoming involved in legal or administrative actions. Moreover, the Act goes on to state the program is obligated to inform long term care recipients of their rights and services to which they’re entitled, to educate the public about care-related issues, to encourage participation of citizen organizations in its efforts, and to provide assistance in getting comments on government policies when warranted. In addition, advocacy functions going beyond acting on specific incidents are established, encompassing policy analysis, recommendations for modifications in laws and regulations, and promoting changes “to improve residents’ quality of life and care.” Lastly, in nursing homes and assisted living facilities there is a requirement for ombudsmen to assist in the formation of family and resident councils, mechanisms that, when they work well, give habitants and their families a way to express concerns and address problems. On paper at any rate, the arsenal for advocacy the ombudsmen have is not insubstantial.
With the help of volunteers, ombudsmen can meet and talk to a representative number of people residing in the nursing homes and personal care homes for which they are responsible. They get an idea of which ones are giving good, indeed compassionate, care; which ones are cutting corners by hiring uncaring workers and not filling vacancies promptly; and which ones are in the gray area of trying (though not always very hard) to get and keep competent personnel who concentrate on alleviating discomfort as well as planning activities that, if not meeting the highest standards of enrichment, nonetheless drive away boredom in otherwise dreary routines. Along with resident councils and informed family members, the safety and well-being of most occupants can be maintained; yet there is one group whose treatment can’t be easily ascertained—those with Alzheimer’s, dementia and some types of mental illness.
For the most part, egregious abuse or neglect eventually becomes apparent; however, the subtler forms of maltreatment—rough handling, insulting language, and all the various modes of disrespect—are hidden when the population with mental disabilities is affected. Individuals who can’t remember interactions from a few minutes ago aren’t going to be able to report they’re not getting enough food, or they’ve been waiting an hour for a call light to be answered, or a staffer had screamed obscenities at them. The people I’ve met with these debilitating conditions exhibit a wide range of emotions and attitudes. One man in his seventies thinks he’s 23. He is always agitated and wants out to go home. Or another is a woman with a very dark complexion, probably an East Indian, who wears bright colored blouses and dresses. Sitting quietly at a dining room table, she would watch me closely, saying nothing the first few times we met. I wasn’t sure if she spoke English, but on one visit she opened up, telling me she has fifteen children and hails from Guyana. And there’s a woman with a round face who’s the social butterfly of the group, hanging around a different person each time I stop by. She contends she has no worries, and there’s always a slight, droll smile on her lips, as if she is aware of something I’m missing. There are many more, some want to talk, some don’t. It’s disconcerting to think I and others don’t have an inkling of what is happening to them when they’re alone with only their attendants around. Knowing how residents are dealt with generally, we can infer some with mental disabilities will be insulted physically and emotionally and some will be neglected. Unlike those who are mentally alert, the possibility of uncovering mistreatment in this population is nil.
Concerning the residents who are alert: Is there more than meets the eye? There have been several studies seeking answers to this question. One is a survey of nursing home patients done in Georgia about ten years ago by the Atlanta Legal Aid Society, which administers the ombudsman program in the metropolitan Atlanta region. Admittedly it’s dated, and some would argue that it’s biased toward “problem facilities,” and doesn’t follow strict research protocol. Despite these drawbacks its findings are telling—devastatingly so. The project started with ombudsmen and volunteers interviewing residents in ten facilities with poor track records, later augmenting this group with residents in other facilities who wanted to talk to them. They eventually gathered data on 80 inhabitants of 23 nursing homes. Compiling and assessing the responses was the first aim of the study, the second was finding out how the state inspectors handled reports of abuse and neglect. Of those queried, 38 percent had seen abuse, but only a little over half reported it, with fear of retaliation and the feeling no action would be taken given as the main reasons for not acting. Over 44 percent said they had been abused, but again most didn’t report it. A startling 95 percent claimed they had seen others neglected. About a fifth of the respondents had been given the wrong medication, but of these only 38 percent said the mistake was corrected when they told a nurse, and 14 percent said that they had taken medication not intended for them. Nearly half of the respondents, 48 percent, had been roughly handled by angry or impatient aides, while 44 percent had seen others physically treated in a similarly uncaring manner. Four out of five replied the facilities they’re in are understaffed, and almost a third pointed to hiring more personnel as a way to making improvements.
A review done for the National Center on Elder Abuse by the University of California, Irvine encompasses reactions from the other side, nursing home staff. As background, it was noted from 1999 to 2001 one in three nursing homes were cited for violating federal standards; and for ten percent of the residents, these violations “caused harm, serious injury, or placed them in jeopardy of death.” In 2000, half of nursing home staff admitted they had mistreated residents physically, mentally or (for two thirds of the incidents) by neglect the previous year; and in a survey of certified nursing assistants, 17 percent acknowledged pushing, shoving or grabbing residents, 51 percent yelled at residents, and 23 percent swore at or insulted residents.
According to the authors of the Legal Aid study, their statistics reveal an environment in which “the sense of disenfranchisement, vulnerability and helplessness among the residents was pervasive...” They conclude the source of these deleterious conditions is twofold. The first is employees providing direct care are low paid and mostly women, who get little respect from managers or the general public because of the “stigma” of working in a nursing home. Consequently, turnover is high, meaning a large portion of workers is learning to do the job. The second cause is related to the researchers’ contention the regulatory agency does not take residents to be “credible witnesses,” and contrary to their own procedures they primarily interview administrative personnel when investigating complaints. Further, it was found regulators sometimes disregard inculpating evidence and don’t cite a nursing home for documented abuse. The disheartening result is “administrators are under no pressure to address legitimate, verifiable issues concerning abuse and neglect because they are not cited.” While nursing homes are frequently understaffed and officials ignore problems, there is a larger issue.
It’s not an exaggeration to say decision makers aren’t merely upset, they are furious when they hear about caregivers who exploit and debase the vulnerable people who depend on them for the necessities of life. But as we all know, there are many demands and public resources are scarce. So, the reasoning goes, we must ensure the inspectors do a better job, and as a corollary, ombudsmen should focus on appropriate matters and not get in the way of well-meaning owners and their employees. There are no new monies for better oversight. Why? No public support. Clearly there’s not a groundswell for funding to bolster regulatory actions or for additional financial resources for service providers. In setting priorities, political and governmental authorities are in fact reflecting the sentiments of voters, many of whom have loved ones in long term care. If asked, we average citizens would respond the denizens of nursing homes and personal care homes should receive the assistance and protection necessary to live with dignity. Yet at the same time, we don’t want to think about them. Although we won’t express it openly, the elderly and disabled are discounted as not being productive contributors to society; hence we place them in environments where they aren’t seen. It’s this refusal to recognize as equals those “pass their prime” or incapacitated, those who can’t function without help, which has left us in the circumstances described in the Atlanta study and distressingly detailed in the National Center for Elder Abuse statistics.
Some of the research I’ve located is nearly 15 years old. To those who say these dated results have lost their significance, my response is the background facts haven’t changed: long term care attendants remain among the lowest paid employees in health settings, barely getting above minimum wage; the regulators were then and are now faced with too many facilities to effectively monitor; and what I’m seeing today in my routine visits is compatible with the evidence brought to light in studies from years ago. Furthermore, lack of recent research underscores the indifference of the public and policy makers—if there was interest in long term care abuse and neglect, researchers would be on it. The problem is not improving. Those who think it is, are either unaware of or intentionally ignoring the federal and state data on complaints and investigations.
The lack of popular support for serving and protecting this population also affects advocacy. For instance, a rather lenient minimum standard is for an ombudsman to check each facility once a quarter, yet with current resources only 70 percent of the nursing homes and 33 percent of board and care settings are seen even this infrequently. For the sake of an impossible to make argument, let’s say the incidents of maltreatment have declined by a quarter—a staggering reduction even with a large infusion of financial assistance. This scenario would leave nearly a third of all residents abused (down from 40 percent in the Atlanta study) and over 70 percent either neglected or knowing of someone who is neglected (down from 95 percent). In spite of substantial improvement, the problem is so large we would still have untenable results.
I don’t want to be misunderstood—we’ve come a ways in fifty years. The flagrant disregard for resident safety and the horrifying maltreatment proliferating in a previously unregulated environment have diminished because ombudsman, other advocates, law enforcement, and governmental officials are watching. Additionally, the large number of complaints investigated and resolved is not an insignificant accomplishment. Long term care is beyond doubt more humane than it was only a few decades in the past. The worst conditions, at least in licensed facilities, have been brought under control. Nonetheless, much must be done to extend respect and dignity, in all their manifestations, to those receiving care. At the same time, we mustn’t forget these residences are businesses. Health insurance doesn’t cover charges beyond limited rehabilitation services; long term care plans usually only provide for a portion of the expenses; Medicaid reimburses nursing homes at a rate they say barely meets their outlays; and individuals paying out of their pocket are seldom wealthy. Thus the owners are under pressure to keep costs down. Generally, their biggest expense is personnel. While nurses are relatively scarce and are normally paid close to the going rate, certified nursing assistants don’t have to meet stringent training requirements and are paid poverty level wages. This last, and most numerous, group of employees, are the key to keeping daily expenses under control. If CNA qualifications are raised, salaries go up and facilities are priced out of the market. Operators can’t change these facts. If they want to survive, they can only do so by exploiting mostly poor women, some of whom, in turn, take out their frustrations on the residents.
Ombudsmen have the tools for finding and dealing with mistreatment: access to residents and their records as well as to facilities at any time, and the ability to request an investigation by authorities. But they face impediments in a changing environment. For one, their numbers are meager and stagnant, not nearly adequate to visit all facilities on a suitably regular basis. At the same time, the elderly population is dramatically increasing, driving up the number of nursing home and board and care beds. Consequently we’ll see more examples of curtailed activity similar to what happened at the metropolitan Atlanta program, which had to scale back nursing home visits from once a month to quarterly because of a backlog of over 2,000 personal care homes that weren’t being seen every three months. In short, resources aren’t keeping up with the demand.
There’s another group we ignore and often shun, whom we treat worse than the aged and disabled: persons with HIV and AIDS. The rate in the United States for this infection is four or five times higher than in other developed societies. In a New Republic article the reasons for this extraordinary difference were summed up by a Johns Hopkins researcher who noted when compared to others, America is a larger, “more complex, and much more unjust country.” Unlike our attitudes about drug abusers and gays, we maintain we hold our senior citizens and those with disabilities in high esteem. But the evidence is clear: for these most vulnerable populations our actions prove we are apathetic, and here too, our apathy reveals an unjust country.