Ani B. Satz, Overcoming Fragmentation in Disability and Health Law

• Publication year: 2010

OVERCOMING FRAGMENTATION IN DISABILITY AND HEALTH LAW

Ani B. Satz^*

INTRODUCTION .............................................................................................. 277

I. A THEORY OF FRAGMENTATION ......................................................... 281

II. FRAGMENTATION IN DISABILITY LAW ............................................... 284

A. Civil Rights Protections .............................................................. 284

1. Macro-Level Fragmentation ................................................ 285 a. Eligibility for Protected Class Status ............................ 285 b. Disability Accommodation and Other Modification ...... 288

2. Micro-Level Fragmentation: Judicial Environment- Framing ................................................................................ 291

B. Eligibility for Social Security Disability Benefits ....................... 294

III. FRAGMENTATION IN HEALTH LAW .................................................... 300

A. Eligibility for Health Benefits ..................................................... 301

B. Lack of Coordinated Care as a Barrier to Access ...................... 303

IV. CHALLENGING ASSUMPTIONS ABOUT THE HUMAN EXPERIENCE ...... 304

A. Philosophical Assumptions ......................................................... 305

B. Legal Assumptions ...................................................................... 308

C. Recognizing Universal Vulnerability .......................................... 311

D. Universal Versus Targeted Approaches ..................................... 314

E. Holistic Look and Micro-Level Fragmentation .......................... 317

CONCLUSION .................................................................................................. 319

INTRODUCTION

Legal structures respond to human need by defining situations in which specific rights or entitlements attach. Legal protections usually depend on whether an individual is operating within a particular time period,¹physical space,²or other context.³The assumption underlying this targeted approach to state response is that the law must make distinctions between individuals that both determine eligibility for legal protections and possible remedies. In litigation, this approach may be perceived as necessary to promote fairness amongst adversarial parties.⁴Targeted approaches may also facilitate desired judicial outcomes, by expanding, contracting, or reframing liability.⁵Laws structuring social welfare programs or other access to material resources may target certain populations to control public expenditures.⁶

The major weakness of this targeted legal approach is that individuals' experiences and needs are not viewed holistically across civic and social realms, but in fragments defined by certain legally protected contexts. By varying protection based on context, the law fragments the human experience. The legal subject experiences a condition, harm, or other circumstance that the law fails to recognize adequately. Legal protections start and stop in various places within the public realm and may not afford the continuity necessary for meaningful civic or social participation. Further, laws conferring material benefits are rarely extended into the private sphere, failing to respond to the fact that some individuals require assistance to leave their homes or otherwise enter the public realm.⁷

Legal structures fragment protections across almost every field of law, by addressing only certain time periods, environments, issues, or persons. Legal fragmentation is perhaps most consequential, however, in the context of disability and health law. In this context, the human condition itself is at stake. Individuals who are disabled or seriously ill (i.e., who have a condition that impairs functionality and requires intensive and extended medical care) may not be able to enter the public realm to benefit from the protections and privileges that exist in that domain.⁸Thus, a fragmented approach to law fails to recognize or appreciate that barriers arising in an environment the law does not address, such as the home, may impact participation in other environments where the law does provide protections, such as the workplace.

Unsurprisingly, dominant political, economic, and social theories influencing the law assume that individuals are able to enter society and participate on equal ground. For example, the "liberal subject" of Rawlsian contractarian theory is one who does not experience profound periods of disability or illness, but rather is fully functional over her lifetime.⁹Libertarian theorists assume that individuals are capable of laboring for wages.¹⁰Law and economics scholars view individuals as possessing the ability to form and order certain preferences in ways that allow them to participate actively and efficiently in the market.¹¹Legal rights and protections premised on these assumptions fail to reach some disabled and seriously ill individuals who face barriers to entry into the workforce, barriers to service and facility accessibility, or significant medical expenditures. Indeed, it is likely that many laws-and most of the arguments put forth in law review articles adopting the foregoing theories-begin with assumptions about social participation that exclude disabled and seriously ill individuals.

This Article explores the previously underappreciated problem of legal fragmentation for individuals who are disabled or seriously ill. I examine such fragmentation at the macro- and micro-levels. At the macro-level, I discuss how legal structures-namely legislatures and government agencies and the laws and regulations they respectively create-respond to disability and illness. I also discuss fragmentation in disability law at the micro-level, or how judicial construction of laws further undermines protections for individuals with disabilities.¹²Part I of the Article presents my theory of fragmentation. Fragmentation occurs when the lived experience of an individual with an impairment differs from what is recognized by the law. This disrupts legal protections and impedes access to material resources. Parts II and III explore the implications of this theory for fragmentation in disability and health law, respectively.

Part IV challenges the legal assumptions that give rise to fragmentation in disability and health law as well as the philosophical underpinnings of those assumptions. I argue that the current legal approach fails to recognize universal vulnerability to disability and serious illness and the social disadvantage that may follow from each of those states. I assert that the law must better align with the human experience of disability and serious illness, by recognizing that many individuals are not fully functioning, and their impairments extend beyond discrete statutorily protected realms.¹³I suggest at a minimum that an individual must be viewed holistically, across the full range of environments in which she functions, to assess her level of impairment and need for accommodation or other modification. To best address disability and serious illness, the state may need to restructure legal and social institutions. Moving toward universal approaches to disability and health benefits will increase participation in the civic and social realms by individuals who are disabled or ill. The Article then concludes by remarking on the implications of my findings for an era of re-regulation.

I. A THEORY OF FRAGMENTATION

Most succinctly stated, fragmentation occurs when law separates or breaks apart the experience of the legal subject.¹⁴This happens because the actual experience of living with a disability or illness differs from the legally recognized one.¹⁵The disjunction between the actual and legal experience manifests itself in two ways. First, an individual may identify as ill or disabled but not be legally recognized as such. As a result, she may not be entitled to protections or material resources. Second, an individual who is recognized as ill or disabled may experience inappropriate limitations to the protections or resources she receives.

Fragmentation occurs on both macro- and micro-levels. At a macro-level, fragmentation results from statutes and regulations that address impairment as exceptional rather than as part of the human condition. Impairment is treated as legally relevant only in certain contexts, in the sense that protections and benefits attach to particular individuals within specific situations. On a micro- level, fragmentation occurs (and is exacerbated) due to judicial construction of legal rules or policies about impairment. In other words, individuals with disability and illness are disadvantaged by the plain language of laws as well as the manner in which those laws are construed and applied.

At both the macro- and micro-levels, fragmentation may be linked to the state's response to two inquiries, namely, whether an individual is disabled or ill, and, if so, whether she is entitled to protections or benefits.¹⁶In both cases, there is a disconnection between the experience of living with disability or illness and the legal recognition of that experience. In the initial context of eligibility, an individual may subjectively experience disability or illness but not be legally recognized as having such. This may be damaging to one's self- conception and deeply offensive.¹⁷This is particularly so in the case of laws with the stated purpose of promoting access for, or providing benefits to, individuals with disabilities.¹⁸Fragmentation may also be experienced by individuals who are legally recognized as disabled or ill, when the law fails to appreciate that their needs extend throughout the life course or to unprotected environments. In this situation as well, the lived experience of disability or illness differs from the legal one.

Fragmentation in disability and health law occurs most notably in four contexts: eligibility for...