AGING TODAY: THE ELDERLY AND THE QUEST FOR AUTONOMY
Elias S. Cohen, J.D. and Keren Brown Wilson, Ph.D.

It has taken well over twenty years to begin to shift the place of care of chronically ill and disabled away from the institutional solutions to options variously defined as community based care. Today, about 800,000 Medicaid beneficiaries receive home and community based services (Pear 2003). About half are 65 and over. This compares to over one million Medicaid clients living in licensed nursing homes and other institutional settings who are mostly over age 65. Ironically, for all of the advocacy efforts on behalf of older persons, the most significant developments in home and community based services have occurred in developmental disabilities, resulting in an undeniable shift away from the institutional solution to the community based solutions.

Recently a GAO report attacked the quality of care in nursing facilities and questioned the quality of care in community based care ( Pear, 2003). This report forces our attention on the complexities of delivering care in any setting. It forces us recognize that the methods tried to date have not achieved our goal of providing care that is high quality, responsive to the needs of people with disability, offers long term economic and programmatic efficiencies, and above all, vindicates the fundamental right to flourish regardless of age, disability, race, gender, or other recognized group, status, or class of individuals.

VINDICATING THE RIGHT TO FLOURISH

Regardless of what the most passionate advocates may assert, there are no magic bullets: not injunctions against institutional care, not policies which attach money to the person, 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 rights to autonomy, self-determination, and consumer directed care is complex. Autonomy and what it means is poorly understood. At the fundament, it involves economics. We assume the well-to-do can more easily vindicate these rights than the poor. But mobilizing the variety of economic assets to provide the essentials of independent living in the setting of choice ---accessible, affordable, and appropriate housing, transportation, medical and nursing care, personal assistance, entertainment, social associations, friendships and social/psychological supports---can be daunting in the long term. For those with few resources it is often impossible.

Moreover, we have only begun to understand the nature and meaning of chronic disability, how to ameliorate and/or compensate for disabilities, and what changes might be necessary in the larger society to overcome the physical and social barriers to full participation.

The sense of a right to flourish, to determine one.s destiny, requires a strong sense of worth, optimism, and belief that people with disabilities--- have the ability to engage positively with the world about them and to experience joy and pleasure. To the extent that either individuals with disabilities or those hoping to assist them deny the capacity for engagement and joy, the exercise of autonomy will fail.

UNDERSTANDING AUTONOMY AND WHAT IT REQUIRES

Notions of autonomy are complex. (Collopy, 1988) Executional autonomy may be severely compromised. Quadriplegia, ALS, cognitive impairments, can and do get in the way of carrying out one.s decision to act. However, decisional autonomy may persist in undiminished or somewhat diminished form even for those with dementia or other forms of cognitive impairments. And decisional autonomy deserves no less respect than executional autonomy. Furthermore, understanding autonomy requires a sophisticated appreciation of liability issues (Kapp, 2001), safety, and the limits of parens patriae (Horstman, 1975). Without understanding the facets and nuances of autonomy, we cannot satisfactorily operationalize, fund, and reform the long-term care system to put into practice the principles and practices that are 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 complex as the ideas themselves. .Living at home.---what people with disabilities want with all their hearts---means having adequate, appropriate housing available with help available when they need it. And when living in .their. home is not feasible they want the setting in which they live to replicate the features that define home for them.

Without decent housing and accessible transportation and other services there can be no adequate home and community based program or arrangement. The urban and rural slums of America are unhealthy and unsafe for those who live there. Those with chronic illness or chronic disability are isolated and abandoned. Absent basic amenities, adding services in the home adds little to ameliorating the misery of daily life. Self-determination works best when there are support assets readily available, particularly from those of family. But where does that leave the hundreds of thousands of who are alone, far from family (if they ever had any), impoverished, sick and disabled, without financial or other resources? If substitutes are created how are they to be given the characteristics of family that support self-determination?

Balancing risk (always present with disability) against social compassion can be complicated. How do we vindicate the right to foolish decisions---perhaps our ultimate liberty right? One woman.s .foolish decision. is another woman.s cultural or personal habit: poor diet, poor or non-existent health routines, smoking, sedentary life-style, self-imposed isolation. How do we balance the right of the individual against the rights of others in a setting, or for that matter the larger society. To what extent should the refusal to use assistive devices such as walkers or be compliant with treatment regimens reduce any liability of those charged with providing care? How much exposure to hazards in the living environment is to be tolerated in any setting?

That these difficulties exist is no reason to cease or in any way diminish the quest for autonomy and the programs that vindicate the right to flourish---at home, in the community, or any institutional setting. Indeed, that we know about the shortfalls and barriers, that we cannot plead ignorance about solutions ,gives us all the more reason to undertake the steps to achieve the goal.

The steps must be deliberate and comprehensive. This is no less important than matters of Social Security or, for that matter, the reported concerns detailed in the GAO report.

NEXT STEPS

• Identification of salient issues: These include the legal and ethical underpinnings of self-determination and consumer direction); economics of long-term care, and the projected impact of self-determination. Above all, is the reaffirmation of the continuing need for systems reform and the necessity for renewed commitment to those most vulnerable in our society.

• Identification of significant barriers: While many of these have been identified, we must focus more on how they are to be addressed systematically. In particular we must recognize and respond to the conflict society has between the right of self-determination for individuals and the beneficent, if sometimes misguided inclinations to paternalistic interventions and constraints. We must determine how to balance competing goals of autonomy and safety, appropriate risk assessment and abandonment in the name of self-direction.

• Identification of Organizations whose goals are or should be consistent with those of self-determination. Organizations which have a logical interest in supporting the right to self-determination need to examine how vigorously (or weakly) they are promoting self-determination interests---or whether they may be unwittingly impeding them. Among those that come to mind are the Long Term Care Insurance industry, the Elder Law Bar (notably the Trust and Estate components, women.s advocacy groups, and the several health and residential care associations. Their challenge is to see the complexity of the issue and to commit themselves to addressing it both within and outside of their organization.

• Involvement in appropriate meetings and activities. We must find. opportunities to make strategic presentations at professional and trade association meetings beyond the usual targets of academic and practice gerontology. We need to explore further strategies that might be useful in helping us educate the larger public to this issue and to train those involved in the day to day lives of those with long-term disability to support self-determination. What is especially needed is the expression of popular will that will bring forth the same type of intense dedication that accompanied many pivotal changes in our country throughout its history - public education, the GI bills, civil rights, Medicare and Medicaid.