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45 Fla. St. U. L. Rev. 313 (2017-2018)
Severe Brain Injury, Disability, and the Law: Achieving Justice for a Marginalized Population

handle is hein.journals/flsulr45 and id is 336 raw text is: SEVERE BRAIN INJURY, DISABILITY, AND THE LAW: ACHIEVING JUSTICE FOR A MARGINALIZED POPULATION MEGAN S. WRIGHT, NINA VARSAVA, JOEL RAMIREZ, KYLE EDWARDS, NATHAN GUEVREMONT, TAMAR EZER, AND JOSEPH J. FINs* ABSTRACT Thousands of persons with severe brain injury who are minimally conscious or locked in are wrongly treated as if they are unconscious. Such individuals are unable to advocate for themselves and are typically segregated from society in hospitals or nursing homes. As a result, they constitute a class of persons who often lack access to adequate medical care, rehabilitation, and assistive devices that could aid them in communication and recovery. While this problem is often approached from a medical or scientific point of view, here we frame it as a legal issue amenable to legal remedies. This Article comprehensively explores and analyzes sources of federal, state, and international human rights law that can be lev- eraged-both in traditional and novel ways-to improve the lives and protect the rights of persons with severe brain injury. We argue that state laws may be the most promising basis for legal action to ameliorate the clinical marginalization and societal neglect faced by per- sons with severe brain injury, and to promote their recovery and reintegration into their communities. I. INTRODUCTION.............................. .............................. 314 II. EPIDEMIOLOGY OF SEVERE BRAIN INJURY AND DIAGNOSTIC FRAMEWORK OF DISORDERS OF CONSCIOUSNESS ............................................ 317 III. JUSTICE FOR PERSONS WITH SEVERE BRAIN INJURY UNDER FEDERAL LAW..... 322 A. United States Constitution ....................................... 322 1. Due Process ....................... ......................... 323 2. Equal Protection ............................................. 325 B. Disability Discrimination Statutes and Case Law ............... ...... 328 1. Section 504 of the Rehabilitation Act ............ ................. 328 2. Americans with Disabilities Act and Olmstead Enforcement.............. 329 C. Affordable Care Act . ............................................. 334 1. Nondiscrimination. .............................. ............. 334 2. Essential Health Benefits ...................................... 335 3. Changes to Medicaid ......................................... 336 D. Statutes and Regulations for Subpopulations of Persons with Severe Brain Injury ................................................... 339 * Megan S. Wright, J.D., Ph.D. is a Postdoctoral Associate of Medical Ethics at Weill Cornell Medical College and a Research Fellow at the Solomon Center for Health Law and Policy at Yale Law School. Nina Varsava is a J.D. candidate at Yale Law School and a Ph.D. candidate at Stanford University. Joel Ramirez, J.D., is an Associate with Morrison Foerster, San Francisco, CA. Kyle Edwards, D.Phil and Nathan Guevremont are J.D. can- didates at Yale Law School. Tamar Ezer, J.D., L.L.M. is a Lecturer in Law, Associate Re- search Scholar in Law, Schell Visiting Human Rights Scholar, and the former Executive Director of the Solomon Center for Health Law and Policy at Yale Law School. Joseph Fins, M.D., M.A.C.P. is the E. William Davis, Jr., M.D. Professor of Medical Ethics at Weill Cor- nell Medical College, co-director of the Consortium for the Advanced Study of Brain Injury at Weill Cornell Medical College and Rockefeller University, and the Solomon Center Dis- tinguished Scholar in Medicine, Bioethics, and the Law at Yale Law School. The authors wish to acknowledge the support of the Jerold B. Katz Foundation, the Solomon Center for Health Law and Policy at Yale Law School, and Weill Cornell Medical College, and thank Professor Abbe Gluck for her support and for helping to make this collaboration possible.

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