United States v. Florida

682 F.Supp.3d 1172

UNITED STATES of America, Plaintiff, v. State of FLORIDA, Defendant.

Case No. 12-cv-60460-MIDDLEBROOKS/Hunt

United States District Court, S.D. Florida

Signed July 14, 2023

Christopher N. Johnson, Anastasia Protopapadakis, GrayRobinson, P.A., Miami, FL, Andre Velosy Bardos, Gray Robinson, P.A., Tallahassee, FL, Andrew T. Sheeran, Leslei Gayle Street, Stuart Fraser Williams, Agency for Health Care Administration Office of the General Counsel, Tallahassee, FL, Ashley Hoffman Lukis, George N. Meros, Jr., James Timothy Moore, Jr., GrayRobinson, P.A., Tallahassee, FL, Tara Renee Klimek Price, Shutts and Bowen LLP, Tallahassee, FL, Dylan James Hooper, John A. Boudet, GrayRobinson, P.A., Orlando, FL, for Defendant.

Chantel Doakes Shelton, DOJ-USAO, Miami, FL, Veronica Vanessa Harrell-James, United States Attorney's Office, Miami, FL, Lindsey Weinstock, Elizabeth Erin McDonald, Amanda Pearlstein, Janelle Geddes, Lauren Latterell Powell, Nonney Onyekweli, Jillian Lenson, U.S. Department of Justice, Civil Rights Division, Washington, DC, for Amicus United States of America United States Attorney's Office.

MEMORANDUM OPINION AND ORDER

Donald M. Middlebrooks, United States District Judge

". . . while at [Kidz Korner], my depression got so bad that I wanted to fall asleep and not wake up. But since being at home, it hasn't been like that."¹

Jade Quinones is 19, and for four years she resided at The Kidz Korner ("Kidz Korner"), a pediatric nursing home in Plantation, Florida, one of three such facilities in the state. She has complex medical needs, requiring the use of life-sustaining medical equipment. She is confined to a wheelchair, and she breathes with the assistance of a tracheal tube ("trach") and ventilator. She has suffered hearing loss, and she communicates by means of a tablet. But she is an enthusiastic reader, and she aspires to be an author. "I want to be a romance author because there's so many things you can experience and create. I mean, what is not to love about love?" (DE 789-25 at 18).

Jade described the loneliness and isolation she experienced at Kidz Korner, the time it took for her soiled clothing to be changed, and the fear and panic she felt when her trach became dislodged and she waited for someone to help, because without it she cannot breathe. She is now happy at home and feels safer with her parents and sister taking care of her.

Her mother described the difficulties she faced in bringing Jade home. During trial, parent after parent spoke of their desperation in trying to unite their family and bring their child with medical complexity home. Confusing and inconsistent discharge requirements and Care Coordination, delays in obtaining necessary equipment, and most significantly, limited access to prescribed private duty nursing presented a maze almost impossible for parents to escape.

This should not have happened. Unjustified isolation is properly regarded as discrimination based on disability. Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 597, 119 S.Ct. 2176, 144 L.Ed.2d 540 (1999). Over thirty years ago, on July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act to signal "the end to the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life." Transcript of Statement by the President, July 26, 1990, National Archives.² Nonetheless, the State is violating the rights of children with medical complexity who rely upon the provision of vital Medicaid services and are trying, in vain, to avoid growing up in nursing homes.

Unjustified institutionalization of individuals with disabilities is unacceptable, especially given the advances in technology and in the provision of home-based care. Any family who wants to care for their child at home should be able to do so.

TABLE OF CONTENTS

I. INTRODUCTION . . . 1181

A. OVERVIEW OF THE CASE . . . 1181

B. THE BENCH TRIAL . . . 1182

II. THE ADA AND OLMSTEAD . . . 1183

A. STATUTORY LANGUAGE AND PURPOSE . . . 1183

B. THE INTEGRATION MANDATE AND OLMSTEAD . . . 1184

C. OLMSTEAD APPLIES TO AT-RISK CHILDREN . . . 1185

III. PROCEDURAL HISTORY . . . 1186

A. CONSOLIDATION OF CASES: THE CHILDREN'S CLASS ACTION AND THE UNITED STATES' ENFORCEMENT ACTION . . . 1186

B. TURNING POINTS IN THE LITIGATION . . . 1188

C. EVENTUAL FATE OF THE CHILDREN'S CLASS ACTION, AND CONSEQUENT NEED FOR THE ENFORCEMENT ACTION . . . 1189

D. POST-REMAND THROUGH BENCH TRIAL . . . 1190

IV. STANDING . . . 1190

A. AUTHORITY TO SUE . . . 1190

B. TRACE ABILITY AND REDRESSABILITY . . . 1192

V. FAMILY NARRATIVES . . . 1195

VI. OVERVIEW OF FLORIDA'S MEDICAID PROGRAM . . . 1206

A. ADMINISTRATION OF SERVICES: MANAGED CARE PLANS AND FEE-FOR-SERVICE . . . 1207

B. INVOLVEMENT OF OTHER STATE AGENCIES AND THIRD PARTIES . . . 1207

C. INSTITUTIONALIZATION . . . 1208

VII. FLORIDA'S FAILINGS: HOW THE STATE IS DENYING ACCESS TO CRITICAL SERVICES . . . 1209

A. PRIVATE DUTY NURSING . . . 1209

1. The Data Supports a Finding that Families are Being Denied Access to Adequate PDN . . . 1210

2. The Problem is Widespread . . . 1212

B. CARE COORDINATION . . . 1213

1. Care Coordinators Are Unable to Facilitate Families' Access to PDN . . . 1214

2. Failure to Inform . . . 1215

3. Transition Planning and Barriers . . . 1215

4. Reporting Mechanisms and Tools for Data Collection . . . 1216

C. IBUDGET WAIVER SERVICES: WAITLISTS . . . 1217

D. MEDICAL FOSTER CARE PROGRAM: ELIGIBLE CHILDREN ARE INSTITUTIONALIZED . . . 1218

VIII. THE STATE'S DENIAL OF ACCESS TO SERVICES IS RESULTING IN UNNECESSARY INSTITUTIONALIZATION . . . 1219

IX. APPLICATION OF THE OLMSTEAD ELEMENTS . . . 1220

A. APPROPRIATENESS . . . 1220

1. Applicable Law - Medical Appropriateness . . . 1221

2. The Children Are Capable of Community Living . . . 1223

a. Review of Medical Records and Tours of Facilities . . . 1224

b. Expert Opinion . . . 1225

3. Home is Best . . . 1225

4. The Court's Site Visit to Kidz Korner . . . 1226

5. The Children's Eligibility for Community Based Services . . . 1227

6. The State's Counterarguments . . . 1227

7. Conclusion: The Institutionalized Children are Appropriate for Community Living . . . 1229

B. NON-OPPOSITION . . . 1230

1. Applicable Law: "Non-Opposed" Is Not Interpreted by Reference to Barriers . . . 1231

2. Expert Testimony Regarding Caregiver Interviews . . . 1232

3. Other Evidence of Non-Opposition . . . 1234

4. The State's Attempt to Undermine Evidence of Non-Opposition . . . 1235

5. Conclusion: The Families are Not Opposed to Community Placement . . . 1236

C. REASONABLE ACCOMMODATIONS . . . 1236

1. Applicable Law . . . 1236

2. Expert Testimony of Dr. Bachman . . . 1237

a. Recommendations Relating to Private Duty Nursing . . . 1237

b. Recommendations Relating to Care Coordination . . . 1239

c. Recommendations Relating to iBudget Waiver . . . 1239

d. Recommendations Relating to Medical Foster Care . . . 1239

3. Monitoring, Oversight and Accountability Mechanisms . . . 1239

4. Conclusion: Reasonable Accommodations Could be Made . . . 1240

D. FLORIDA'S "SUBSTANTIAL MODIFICATION" DEFENSE . . . 1241

X. THE REMEDY . . . 1242

A. THE MANAGED CARE PLANS MUST BE REQUIRED TO ENSURE THE PROVISION OF ALL COVERED AND AUTHORIZED PDN AND DEVELOP METHODS TO MEASURE AND ENFORCE PROVIDER PERFORMANCE, INCLUDING REAL TIME REPORTING OF PDN PROVIDER ISSUES . . . 1244

B. NURSING FACILITY ADMISSIONS, TRANSITION PLANNING, AND DISCHARGE . . . 1247

1. Freedom of Choice Form . . . 1248

2. Transparent and Specific Discharge Criteria for Nursing Facilities and Transition Planning . . . 1249

3. Clear Lines of Authority Between Care Coordinator Provided by the Managed Care Plan and the Coordinator at Any Nursing Facility . . . 1249

C. IMPROVE THE EXISTING CARE COORDINATOR SYSTEM TO STRENGTHEN ACCOUNTABILITY AND ELIMINATE SILOS OF CARE BY SERVICE PROVIDERS . . . 1249

D. ENFORCE CONTRACTS WITH MANAGED CARE PLANS, INCLUDING ADDING PERFORMANCE STANDARDS, WHERE APPROPRIATE . . . 1250

E. MONITOR . . . 1251

XI. CONCLUSION . . . 1252

I. INTRODUCTION

A. Overview of the Case

The children at issue here are under 21 years old and have disabilities resulting in their need for medical services on a daily basis. As such, the children often qualify for Medicaid and require help conducting activities of daily living. Necessary services include: the use of technology or equipment for communication, mobility, breathing, eating, and other tasks, as well as the use and maintenance of feeding tubes, breathing tubes, ventilators, and wheelchairs.

Those who are institutionalized are spending months, and sometimes years of their youth isolated from family and the outside world. They don't need to be there. I am convinced of this after listening to the evidence, hearing from the experts, and touring one of these facilities myself. If provided adequate services, most of these children could thrive in their own homes, nurtured by their own families. Or if not at home, then in some other community-based setting that would support their psychological and emotional health, while also attending to their physical needs.

The United States filed this lawsuit against the State of Florida in 2013. The suit was brought on behalf of hundreds of children described as "medically fragile" or "medically complex." See United States v. Florida, Case No. 13-61576-CV-Dimitrouleas, DE 1 at 4.³ Some reside in pediatric nursing facilities ("Institutionalized Children"), and others reside in the community but are at serious risk of institutionalization due to lack of access to necessary services ("At-Risk Children"). There are approximately 140 Institutionalized Children. The number of At-Risk Children totals more than 1,800.

It has taken over a decade for this case to finally reach trial. But today, I conclude that the United States met its burden of proving that the State of Florida is administering its services in a way that discriminates against children with disabilities, in violation of Title II of the Americans with Disabilities Act ("ADA"), 42 U.S.C....