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BOOK REVIEW |
Division of Health Services Research School of Public Health, University of Minnesota Minneapolis, MN 55455
Community Supports for Aging Adults With Lifelong Disabilities, edited by Matthew P. Janicki and Edward F. Ansello. Paul H. Brookes Publishing Company, Baltimore, MD, 2001, 585 pp., $56.00 (cloth).
No Place Like Home: A History of Nursing and Home Care in the United States, by Karen Buhler-Wilkerson. The Johns Hopkins University Press, Baltimore, MD, 2001, 293 pp., $45.00 (cloth).
Older Adults With Developmental Disabilities, by Claire Lavin and Kenneth J. Doka. Baywood Publishing Company, Inc, Amityville, New York, 1999, 160 pp., $32.00 (cloth).
I am always on high alert for books to hone my understanding of how to make long-term care a less painful rite of passage for seniors. The problems with long-term care typically offered to seniors can be boiled down to two points. First, help is irregularly available and difficult to arrange and sustain in the settings that seniors prefer, at the time and in the manner they wish, in the amounts they need, and at the price they (or subsidizing governments) can afford. Second and conversely, care in the places of greatest access and public subsidy, that is, in nursing homes, too often comes at the hideous prices of loss of dignity, freedom, privacy, and a meaningful life.
These two problems with long-term care can be examined without demonizing anyone who currently provides long-term care in nursing homes. They can be approached with sensitivity to the historical circumstances that produced the current approaches to long-term care policy, and recognition of why meaningful reform is such a difficult practical and political proposition. They cannot be examined, however, from a defensive posture that justifies the status quo as a fitting tribute to the grandparents and great-grandparents in the richest nation in the world.
The three books reviewed in this essay can be seen through the filter of a would-be reformer who is concentrating on the current plight of the largest group of people who need and receive long-term care—that is, people who are so old that we no longer need to use the politically correct term older to refer to them. The authors, of course, were writing about something different, and the books deserve to be considered in the light of their intended purposes. But if they offer insights about long-term care for all older people, so much the better.
Two of the books focus on older people with developmental disabilities and, for the most part, intellectual disabilities (in earlier terminology, mental retardation). One of them is Older Adults With Developmental Disabilities, by Claire Lavin and Kenneth J. Doka. The other is Community Supports for Aging Adults With Lifelong Disabilities, edited by Matthew P. Janicki and Edward F. Ansello. The term lifelong disabilities in the Janicki and Ansello title is rather broad for the content of the book, which for the most part zeroes in on lifelong developmental disability with intellectual impairment. There are a few exceptions in that Janicki and Ansello count cerebral palsy (where intellectual ability is often unaffected), spina bifada (which also has mixed effects on intellectual development), and childhood polio with late-life resurgences as developmental disabilities. Similarly, Lavin and Doka include epilepsy in their list of developmental disabilities. Despite these built-in ambiguities, however, these books really concern the aging of people with mental retardation. They bring attention to a phenomenon that was unimaginable 30 years ago: a sizeable group of people with severe developmental disabilities who lived long enough to survive their parents, to experience retirement from the labor force or their ersatz workplaces, and to acquire multiple age-related chronic illnesses and disabilities. If gerontologists read these books on their intended terms, they will be stimulated to consider how to enhance the quality of old age of older people with lifelong developmental disabilities and, secondarily, to consider issues facing the parents and siblings of these individuals, who themselves are often over age 65. They will be introduced to an interesting application of the cohort effect; people older than 65 with developmental disabilities grew up at a time when educational opportunities for them were limited and institutional care was a norm. Some seniors with disabilities have already experienced a round of institutionalization as children and de-institutionalization as adults; therefore, their old-age experience may, therefore, differ from that of subsequent cohorts. These books, particularly the Janicki and Ansello work, may inspire mainstream gerontologists to pay attention to seniors with lifelong disabilities. But the books can also be read sideways with this background question: What can be learned from the changes in perspective on developmental disability over recent decades that can be properly applied to long-term health and human services for all older people?
The third book, No Place Like Home: A History of Nursing and Home Care in the United States, by Karen Buhler-Wilkerson, is a fascinating tale. It traces home nursing and home health care in the United States from early roots in the Ladies Benevolent Society of antebellum Charleston, South Carolina, through the settlement movement at the turn of the 20th century, up to the enactment of Medicare and Medicaid in 1965. Examined head-on, the book addresses the question of why home care has never become a mainstream health or long-term care program in the United States. With a sideways reading, the book offers insights into the challenges of bringing the health component into community-based long-term services for seniors.
Older Adults With Developmental Disabilities
In about 150 pages, Laving and Doka offer a workmanlike discussion of the various ramifications of the fact the people with developmental disability are now aging. Chapters 1and 2 are whirlwind tours through legal definitions for both developmental disability and mental retardation and through the legislative and judicial history that has led to "normalization" as a goal for management and the gradual dismantling of large state institutions for developmental disability. While stressing that people should not be defined by their disability, Chapter 3 reviews common causes of developmental disability, including cerebral palsy, autism, and various conditions accompanied by mental retardation, including Down syndrome and many less well-known neurological conditions. Chapter 4 lists life transitions that may be experienced by people with developmental disability in later years, including retirement, adjustment to illness and age-related disability, residential relocation, and coping with loss and grief. Although a person with developmental disability may already live in a small group home (perhaps having relocated as an adult from a parental home or a closing state hospital), yet another transition may be needed in old age, particularly if the physical setting of the group home is incompatible with increasing physical disabilities. The next two chapters treat the psychological and social aspects of aging, introducing terms like age norm, social role, life course, and cohort effect as applied to developmental disability. One chapter is devoted to the two provider systems—the aging network and the disability network—and another one to public policy. Chapter 9 is a planning guide, complete with organizational addresses, for parents and siblings to use in considering the aging of their relatives. Because the rest of the book seems designed for a professional rather than a lay audience, the planning guide would probably be most useful (until it is out of date) as a tool for counselors who help families with the planning process. This book has the merit of being informative, short, and told with a single authorial voice.
Those seeking more depth about seniors with developmental disability would do well to turn to the edited work by Janicki and Ansello, which presents scholarly treatments of topics that are only treated briefly by Lavin and Doka. It is at times redundant and unevenly interesting for those already steeped in gerontology; for example, many might be advised to skip over rather general chapters on health promotion, nutrition, and oral health. Still, this book contains valuable and interesting material that opens the world of developmental disability to the aging specialist. With a quarter of the 28 chapters written by persons outside the United States, including authors from Australia, France, Canada, and Korea, it has a cosmopolitan aura. Many chapters are extensively referenced, offering a glimpse into a large body of research on adults with disability that may be unfamiliar to gerontologists. Its editors have long been identified with research and policy making at the intersection of age and developmental disability, and they have assembled much helpful material to introduce neophytes to that world.
The first section contains contributions that highlight the challenge of defining and measuring outcomes. Roy Brown, an Australian authority, defines quality of life as "the degree to which an individual enjoys important possibilities of his or her life" (p. 22). He argues strongly that the perceptions of the person most concerned must be heeded separately from those of family members and caregivers, a point not widely accepted in gerontology. A chapter by Michael Mahon and Jennifer Mactavish speaks to the importance of a sense of belonging, and the particular challenge of helping older persons with lifelong disabilities maintain that social integration.
A number of contributions concern family and other community supports and long-term planning, a process that brings many family members face to face with their own mortality. Another Australian, Christine Bigby, presents data to suggest that parents tend to value protection, security, and permanency rather than development and growth experiences for their children, a theme picked up by other contributors. In contrast to the tone of literature about care management for seniors, which tends to emphasize the professional's obligation to promote safety, the chapters here suggest that the professional must often be prepared to help parents relinquish control of their adult children with disabilities.
Many chapters deal with efforts to form coalitions between aging network and disability network personnel, presenting the need for such alliances, strategies for making them effective, and examples of coalitions in action. The case is amply made that the two service sectors are insufficiently informed about each other and that they need to know more about each other just to do the work within their own portfolios—that is, caring for seniors or people with developmental disabilities—because in old age the two spheres merge. The various contributors seem to recommend mainstreaming of adults with disability in senior centers and adult day centers rather than separate programming, which is consistent with current trends in other aspects of public life. Little formal research is available to examine the effects of such mainstreaming on the well-being and pleasure of either group, but, after all, little research is available at the individual level on how these programs affect seniors in general.
Although self-advocacy and activism are discussed, this collection fails to include some of the most dramatic efforts at empowering adults with developmental disability. The New Hampshire Self-Determination project developed individualized budgets and put individual debit accounts at the disposal of people with developmental disabilities (Nerney & Shumway, 1996). Leaders in that effort have gone further recently to suggest that every adult with developmental disability needs a permanent home and a source of continuing income (Nerney, 2001). This vision entails people with developmental disability entering into limited partnerships with their caregivers to make use of their collective resources (perhaps an apartment, a phone, a van, and the income of each party) and go into business. Similarly, Jay Klein's vision includes many people with developmental disabilities becoming home owners and arranging for services that will come to them in that home (Klein, 1999). Such radicalism is not explored in these pages. Programs for cross-training developmental disability and aging staffs so that each becomes aware of the existence and expertise of the other service network go only so far if both staffs need re-education in a vision of empowerment for their constituencies. It seems likely, however, that the disability community has more to teach the aging community than vice versa about how to respect the dignity and individuality of its clientele and advocate vigorously on its behalf.
The Ongoing Quest for Home Care
The struggle to create home care as a large-scale predictable service is intertwined with the rise of nursing as a profession. In No Place Like Home, Buhler-Wilkerson eloquently describes that struggle. A historian and a nurse, she consults contemporaneous sources and meticulously documents her conclusions in 67 pages of small-print endnotes.
The story begins well before the Civil War when "the ladies of Charleston" began a program of home visiting and nursing. It moves through a time after the mid-19th century when, fueled by the example of Florence Nightingale and energized by a spirit of "scientific charity," home nursing took root. The author depicts the emergence of visiting nurse associations (VNAs); in early days the agency might have been called an "Instructive District Nursing Association," reminding us that the educational mission of the visiting nurse is an old one. Then she describes the synergistic and sometimes tense relationship between the "lady managers" of the charitable sponsoring organizations and the nurses at a time when "nurses were not ladies and ladies were not nurses" (p. 30). She also portrays the settlement movement and the work of Lillian Wald, simultaneously claimed as a progenitor for nursing and social work, who founded both the Visiting Nursing Service of New York City and the Henry Street Settlement House at a time around the turn of the 20th century when nursing and social work were inextricably intertwined. (Frustrated with infirmary care and private duty nursing for the wealthy, Wald was a medical student when she began the settlement in 1893; however, "having found an acceptable way to practice nursing, Wald never felt the need to return to medical school" [p. 100]).
Wald is credited with inventing the term public health nursing. The principles guiding early public health nursing included that access to the nurse not be mediated by physician or hospital rules and arrangements; that nursing the sick at home is a serious and worthwhile endeavor that should be primary rather than secondary to education in healthful living; that the poor should have the same access to home nursing as the well-to-do; and the services should be considerate of the dignity and independence of the patients. These seem like principles worth preserving in the 21st century.
No Place Like Home also chronicles some less familiar but riveting stories, including the early experience with home nursing insurance from "Mother Met," the Metropolitan Life Insurance (MLI) Company. MLI initially viewed its coverage of home visits from nurses as a good business proposition that could bring down death rates and, therefore, reduce claims made on behalf of its policy-holders. Starting with a demonstration project in New York City in 1909, MLI coverage was national by 1911 and occasioned welcome contracts with many VNAs. By 1930, MLI coverage accounted for more than 42 million annual visits to almost 8 million policyholders at a cost of $34 million. In the wake of this coverage came a felt need to prove cost-effectiveness to MLI, pressure to decrease the number of visits and effect early discharge, and MLI's comparative studies of the "good judgment" and efficiency of the Visiting Nurse Associations, an early instance of small-area variation studies.
The attention to case mix and length of stay sound astoundingly modern. In 1923, MLI found that only 53% of its contracted nursing agencies showed good judgment: the Philadelphia VNA led with 99.7% good judgment in contrast to Rochester, New York, with 27%. Evidence of bad judgment included excessive visits and preoccupation with the chronically ill, who were argued to be extraneous to the expected effects on mortality that brought the program into being in the first place. This sounds like the arguments of the 1990s when policy makers discovered that Medicare home health was being used as a chronic illness rather than an acute-care program, a similarity not lost on Buhler-Wilkerson.
MLI formally pulled the plug on the coverage in 1953 because the rise of hospitals in the postwar 1940s and the control of infectious disease led to waning use of the benefit by the insured. By then, the nursing profession had thoroughly experienced the effects of its synergistic relationship with MLI, which catapulted the growth of VNAs but also drove them in a direction antithetical to the ideals of some of the first home nurses.
Let us take another illustration from this rich history. Buhler-Wilkerson does not shy away from the troubled subject of race relations in America as she sketches the evolution of home nursing. This topic intersects with the history of MLI, which prohibited contractors from discriminating among its policyholders. We return to Charleston and a fascinating chapter introducing the reader to Anna DeCosta Banks, hired by the Ladies Benevolent Society (LBS) shortly after it realized it could no longer depend on visits by volunteer ladies, but needed a professional nurse. Unable to find and retain a White nurse suited to the work, they hired Anna Banks, a well-qualified Black nurse ("African American" would be anachronistic here) who remained with the organization as "our nurse" from 1903 until her death in 1930. When MLI threatened to withdraw its contract with the LBS because of complaints from some White patients about care by Black nurses, LBS chose to retrench by downsizing and dismissing its second full-time Black nurse rather than changing its policy to retain the contract. In contrast, some northern cities made different kinds of accommodations to the sensibilities of MLI policyholders, often hiring Black nurses for Black neighborhoods. Yet another tale is the rise and fall of private duty nurses in home care, who in the early 20th century were in demand to care for chronically ill patients who were able to pay for "private" services, in contrast to the work of the VNAs with low-income and acutely ill patients. By mid-century most of the private-duty work was being done in hospitals rather than at home, and this form of health personnel was thought to be in oversupply.
In her epilogue, Buhler-Wilkerson says that she began her historical research with the view that failure to change with changing times had doomed home care to the sidelines of health care. But she interprets her history as refuting that hypothesis. She ended up believing that home care, while retaining a core mission and allegiance to the principles outlined earlier, had indeed changed and adapted over the years, but, nonetheless, "never lost its vulnerability ... or found its place in modern health care" (p. 203). Her epilogue's rapid summary of the decades since the enactment of Medicare home health and the reprise of the age-old problem of rising costs and inability to serve those with chronic illness reinforces this pessimistic view. Oddly enough, she downplays the rise of home- and community-based services apart from visiting nurse organizations. She does mention the 1999 Olmstead Supreme Court decision that mandates care in the most integrated settings and she references the Program of All-Inclusive Care for the Elderly (PACE) as evidence that we do know how to provide exemplary care at home. But she omits the great body of home care provided by voluntary and for-profit agencies and individual in-home workers under the aegis of Medicaid waivers.
In describing the perpetual struggle for survival of VNAs at the time when hospitals like Montefiore in New York were reinventing home care (then dubbed "coordinated home care programs"), she highlights the Visiting Nurse Service of Philadelphia, which made a valiant and vigorous effort to expand and provide a hospital level of service. Despite attention to Philadelphia, however, she does not mention the Philadelphia Corporation for Home Care, which since the early 1970s has been offering varied and creative in-home programs for low-income seniors under a more social model. This history makes clear that the development of home care in the United States became intertwined with the evolution of nursing as a profession and its struggle for autonomy and prestige. This link may have accentuated the schism so obvious today between medically oriented care and socially oriented care home care. Sadly, however, more socially oriented care at home is as vulnerable as medically oriented programs, and typically home care is one of the first places where budget cutters look during hard times.
I recommend this book as fascinating reading, whether it is perused with a finger in the footnotes or read as an uninterrupted narrative. It is enhanced by marvelous photographs from the archives of the early nursing associations. It is definitely the story of many heroines in many cities. The sentimental title phrase fails to highlight, as does the text, that the homes these early nurses often climbed up to visit and where private duty nurses sat for long hours were often unsavory places in the extreme.
Something else struck me while reading No Place Like Home. It occurred to me that almost all current struggles of home nursing have analogues before 1920. These issues include: the effort to strike a balance between prevention and education on the one hand, and treatment on the other; the awkward business of what to do with the chronically ill (an issue faced by the LBS of Charleston before the Civil War and that continues to this day); the extent to which housekeeping should be a necessary or proper adjunct of home nursing; the realization that income, housing, and food are as necessary to a healthy community as health care; the tension over the introduction of less qualified nurses (attendants, home health aides, and the like); the cost-effectiveness struggle epitomized by the relationship between the VNAs and MLI; the problems when the community services of public health nursing interfere with perceived business opportunities of physicians and others; the challenge of linking home nurses to their clientele and the intermediary roles of registries and physicians; and cyclical nursing shortages and nursing gluts. Also illustrated is the common propensity of human service professionals to exaggerate a problem to demonstrate the need for their own profession. The skillful use of the threat of contagion to local communities is a case in point, and reminiscent of current exaggerations of quality problems or threats of elder abuse at times when more money is desired for case managers or ombudsman or adult protective workers. Technology is a theme as well, with the telephone depicted as a device that transformed the nature of home nursing.
Long-Term Services for Seniors in the 21st Century
What next for the many seniors who will inevitably need long-term services (a term used by disability activists in preference to the term long-term care)? Does a glance backwards to the development of home care in the United States or sideways at the aging of a people who may need and use health and human services over the life span provide any insights into how to proceed in transforming programs?
Although home- and community-based services for seniors and persons with disabilities have come to be merged administratively in many states, there are many differences between them. Paternalism and protective programming seem to dominate senior services more than developmental disability services; advocates for the former clientele seem more ready to balance multiple individual and societal goals, including cost concerns and safety concerns. The developmental disability field has generated coaches and circles of friends who ferret out and try to realize the wishes of the person with developmental disability, and senior services has generated case managers who balance safety with other needs. Had there been a book to review on the evolution of long-term services for adults with physical disabilities (for example, spinal cord injury), the contrast between the relentless advocacy for community services and all that entails (transportation, housing, equipment) and the well-tempered, cautious advocacy for "appropriate care" for seniors would have been starker. It is worthwhile to speculate about whether seniors would benefit if their services were approached as a civil right rather than as a health care challenge (which is the current formulation for seniors).
An irony particularly worth noting is that as health care advances increasingly permit people to age with disabilities, some individuals, as they become old, are at risk of losing the autonomy that their advocates fought for because of the greater restrictions imposed on how seniors receive services. One example is that seniors are expected to be homebound to receive many community health care services, whereas other populations receive attendant services in order to help them leave their homes. Another example is that some states authorize attendant programs for people younger than 65 while requiring that older people receive their help from an agency, which tends to result in less service to the consumer for the dollars spent and less off-hours care. Differences in clinical approaches in the way supportive services are developed are more subtle, but it appears that younger adults enjoy more flexibility in who is allowed to administer their medications or provide them with health-related care. On a population level, state governments spend much more per capita for home- and community-based services for younger people with disabilities than they do for seniors. This could be because of more vigorous advocacy for home care by and on behalf of younger people, or because government officials are reluctant to open the home-care floodgates more widely to the larger number of seniors. Some professionals argue that institutional care is inevitable for many seniors and even the preferred option for safety reasons, but those contentions are not backed up by research evidence.
As Buhler-Wilkerson reminds us, people with chronic illness are ever with us and are difficult to accommodate within our service system, and seniors needing long-term care are likely to have chronic illnesses. Seniors with multiple, severe chronic illnesses were neither the focus of the MLI efforts at the beginning of the 20th century, nor of the Medicare home health program at the end. If most seniors are to remain at home or to forge out living arrangements in newly designed, "home-like," congregate settings that combine hotel features and services with apartment living, many will need mechanisms to monitor and respond to ongoing health conditions. Nursing will be pivotal to those efforts, yet may need refashioning, perhaps with reemphasis on the spirit and principles of Lillian Wald. For example, respect for the dignity and independence of the clientele is incompatible with assuming that professionals know best where the individual should live. The 1999 Olmstead decision of the Supreme Court called for care in "the most integrated setting," new terminology for what used to be called "the least restrictive alternative," and made each state responsible to make this possible. To realize this goal for seniors, nursing must focus on actually providing ongoing (not just occasional, time-limited) care in the home setting, devising ways to do so that respect the preferences and schedule of the consumer of care and that fully utilize the work of those without certification as nurse's aides or any nursing license. Figuring out practical ways that older people needing long-term services can get their medications administered, their health conditions monitored, and their routine nursing needs met without turning each person's home into a formal health care setting is a practical challenge for today's nurses, social workers, and physicians. It will require the same kind of imagination and intolerance of current operating procedures that characterized the innovators of a century ago. When we figure it out, we should be able to at least halve the numbers of seniors living in nursing homes, reduce the length of their stays, and refrain from rebuilding the strictures of the nursing home world under another name, such as assisted living.
References
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