Elders and the Quest for Their Autonomy

Article excerpt

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. …