Meaningful access to social participation sets a standard for repairing harms imposed by disability discrimination. To be meaningful, access must secure more for people for whom opportunity has been arbitrarily proscribed than merely ushering them through a newly unbolted door only to confront further barriers impelled by bias. Meaningful access to a social process is diminished or denied when individuals, due to disability, are prevented from achieving the benefits that generally motivate individuals to participate in that process. Yet interpreting the meaningful access standard has proved elusive for courts. An influential early decision made the illusory affirmation that the door was open to people with disabilities receiving Medicaid because they had the same fourteen days of eligibility for hospital care as others, even though they disproportionately required longer hospital stays to achieve similar care goals.

Introduction

Principles and practice

Casuistry, or case-based reasoning, is the preferred methodology for clinical ethics. Broadly speaking, this practice of thinking through the ethical aspects of medical decisions gives the particularities of each case primacy over appeals to principle. Emphasizing the details of and differences between cases in this way has proved to be a welcome heuristic against excessively abstract principles and impersonal institutional policies. Furthermore, case-based disquisition not only respects, but emerges out of, the experience-enriched perspectives good clinicians bring to their practice.

In the execution of moral deliberation, however, it can be difficult to discern whether principle-directed, or instead case-based, moral reasoning is being attempted. That is because both methodologies incorporate reference to model cases, albeit in very different ways. But arduous as it may be to disentangle these approaches, the utility of doing so is evident. For where the methodologies have been scrambled, cases will prove themselves resistant to our expectations about how they should be resolved, and will leave a residual puzzlement and dissatisfaction about their outcome. Furthermore, this lack of closure may precipitate premature calls for policy making.

Prior to yielding to pressures to promulgate policies, however, it is prudent to gain a better understanding of what values difficult cases bring into play. Doing so helps to predict when a prospective policy is liable to clash with the values of the broader community. To illustrate, let us explore why, after having successfully executed “long-term ventilation in a child with severe central nervous system impairment,” Drs. Perkin, Orr, and Ashwal continue to find the case an irritant.

IS HEALTH A RESOURCE?

Is health a crucial resource for succeeding in everyday life? Public health policy makers speak as if this were so, both for individuals and for the community as a whole. As a World Health Organization document states: “Health is therefore seen as a resource for everyday living. … it is a positive concept emphasizing social and personal resources. … ” And a Canadian government report explains: “Health is thus envisaged as a resource which gives people the ability to manage and even to change their surroundings.”

It seems obvious to them, first of all, that citizens whose health is, or is likely to be, compromised are unfortunately (and possibly inequitably) limited in their pursuit of deserved opportunities and ends. Second, the presence or prospect of numerous citizens whose health is, or is likely to be, unusually compromised likewise seems obviously to limit a society from the collective realization of desirable social conditions and goals. This way of speaking about health commodifies it. On this conception, health resembles wealth. For individuals who possess it, health is a personal asset that enables productive interaction with the people and things that surround them. Its value, therefore, is instrumental. For societies, citizens' health is treated as a collective asset that is instrumental for achieving the general good.