It has taken well over 20 years to begin to shift the care of people with chronic illness or disability away from institutional solutions to various communitybased options. Currently, about 800,000 Medicaid beneficiaries receive home and community-based services ("Report Criticizes Federal Oversight of State Medicaid," The New York Times, July 7, 2003). Approximately half are 65 and older, compared with over 1 million Medicaid clients living in licensed nursing homes and other institutional settings who are mostly age 65 or older. Ironically, for all of the advocacy efforts on behalf of older people, the most significant developments resulting in this shift to home and community-based solutions have occurred in the field of developmental disabilities.
The U.S. General Accounting Office (GAO) study reported by The New York Times attacked the level of care in nursing facilities and questioned the quality of community-based care. This report should focus professionals in aging, particularly those who manage care, on the complexities of delivering care in any setting. The GAO investigation ought to force the field to recognize that the methods tried to date have not achieved the principal aim of care: that it be of high quality, respond to the needs of people with disability, offer long-term economic and programmatic efficiency, andabove all-vindicate the fundamental right of individuals to flourish regardless of age, disability, race, gender or other category of group identity.
Regardless of what the most passionate advocates may assert, there are no magic bullets: not injunctions against institutional care, not policies that attach money to individuals needing care, not draconian regulation and enforcement, not an endless number of waiver-based programs, not compassionate paternalism, and not reform of guardianship statutes and public-guardianship programs.
Vindicating the moral and legal right to autonomy, self-determination and the ability to direct one's own care is complex. Autonomy and what it means is poorly understood. Fundamentally, it involves economics. Society assumes the well-to-do can more easily take advantage of these rights than the poor because mobilizing the economic assets needed for independent living in the setting of one's choice can be daunting. Think of the challenges facing those with few resources as they seek accessible, affordable and appropriate housing, transportation, medical and nursing care, personal assistance, and social or psychological support. Moreover, the health and service system has only begun to understand the nature of chronic disability well enough to make the changes necessary to help people with disabilities overcome the physical and social barriers to full participation in society.
The sense of a right to flourish, to determine one's destiny, requires a strong appreciation of one's worth, a feeling of optimism and a belief that people with disabilities are able to engage positively with the world around them. The exercise of autonomy will fail, though, to the extent that either individuals with disabilities or those hoping to assist them deny the capacity for engagement with and pleasure in their daily lives.
In recent years, ethicist Bart J. Collopy and others have discussed the need to distinguish the complex elements of autonomy involved in helping older people who need assistance. For example, people may find their executional autonomy, the ability to execute physical tasks, severely compromised. Quadriplegia, cognitive impairments and other afflictions get in the way of carrying out one's decision to act. However, decisional autonomy may persist undiminished or only somewhat diminished even for those with dementia or other cognitive impairments, who may still play a role in making decisions about their lives and care. Decisional autonomy deserves no less respect than executional autonomy.
Furthermore, understanding autonomy requires a sophisticated appreciation of liability issues, safety and the limits of parens patriae (literally, government acting as parent) to those with compromised capacity. Without understanding the facets and nuances of autonomy, society cannot satisfactorily fund, reform and put into operation the principles and practices at the heart of self-determination, consumer direction, and home and community-based care.
Translating concepts and notions of autonomy into policy and practice is as complicated as the ideas themselves. "Living at home"-what people with disabilities want with all their heartsmeans having adequate, appropriate housing available with help available when they need it. When living at home is unfeasible, people want the setting in which they live to replicate the features that define home for them.
Without decent housing, accessible transportation and other services, there can be no adequate home and community-based program or arrangement. The urban and rural slums of the United States are unhealthy and unsafe for those with chronic illness or disability, who are isolated and abandoned there. Absent basic amenities, the provision of services in the home adds little to ameliorate the misery of daily life for these individuals.
Self-determination works best when supportive assets are readily available, particularly from the family. But where does that leave the hundreds of thousands of people who are alone, far from family (if they ever had such support), impoverished, sick and disabled? If the long-term care system creates substitutes, how are they to be given the characteristics that families use to support self-determination?
That these difficulties exist is no reason to cease or in any way diminish the quest for autonomy and the development of programs that support the right of people needing long-term care to flourish-at home, in the community or in any institutional setting.
Future steps necessary to ensure the right of autonomy within the long-term care system must be deliberate and comprehensive. These should include:
Identification of salient issues: Key concerns are the legal and ethical underpinnings of self-determination and consumer-directed care, economic issues in long-term care and the projected effects of self-determination. Above all, it is critical for the field of aging to reaffirm the continuing need for systems reform and renew its commitment to those most vulnerable in society.
Identification of significant barriers: Although many barriers have been identified, the managers of care must focus more on how to address them systematically. In particular, service providers in aging must recognize and respond to society's conflict between the right of self-determination for individuals and the beneficent, if sometimes misguided, inclinations to paternalistic interventions and constraints. We in the field of aging must determine how to balance the competing goals of autonomy and safety, of appropriate risk assessment and abandonment in the name of self-direction.
For example, how do professionals support the right of anyone to make foolish decisions-perhaps one's ultimate right? One woman's purportedly foolish decision is another's cultural or personal habit: poor diet, poor or nonexistent health routines, smoking, sedentary life-style or self-imposed isolation. How do professionals in aging balance the right of the individual against that of others in a setting, or, for that matter, of society? To what extent should the refusal to use assistive devices, such as walkers, be regarded as noncompliant with treatment regimens and when should measures be taken to reduce the liability of those charged with providing care? How much exposure to hazards in the living environment is to be tolerated in any setting?
Identification of organizations whose goals are or should be consistent with those of self-determination: Organizations concerned with supporting the right to self-determination need to examine how vigorously (or weakly) they are advancing that goal-or whether they may be unwittingly impeding it. Especially important are the long-term care insurance industry, the elderlaw bar (notably the trust and estate components, women's advocacy groups, and the health and residential care associations). Their challenge is to see the complexity of the issue and commit themselves to addressing it, both within and outside of their organization.
Involvement in appropriate meetings and activities: The field of aging must find opportunities to make strategic presentations at professional and tradeassociation meetings beyond the usual areas of gerontology. We professionals need to explore further strategies that might be useful in educating the public to issues of self-determination and training those involved in the daily lives of people with long-term disability to support decision making by their patients and clients.
What is especially needed is the expression of popular will that might bring forth the same type of intense dedication that accompanied many pivotal changes in the United States throughout its history-public education, the GI bills, civil rights, Medicare and Medicaid.
We in aging must balance competing goals of autonomy and safety.
Elias S. Cohen is an attorney and winner of the 2002 American Society on Aging Senior Award. Keren Brown Wilson is president of the Jessie F. Richardson Foundation in Portland, Ore.…