AN EVALUATION OF THE JACKSONVILLE DEVELOPMENTAL CENTER CLOSURE Vijay Vasudevan, PhD Amie Lulinski, PhD Tamar Heller, PhD Randall Owen, PhD Mary Kay Rizzolo, PhD Natasha A. Spassiani, PhD Amanda J. Schmidt, MPH, & Carli Friedman, PhD January 2016 This project was funded by the Illinois Department of Public Health with technical support from the Illinois Department of Human Services/Division of Developmental Disabilities ACKNOWLEDGEMENTS The Research team would like to acknowledge the significant logistical contributions of members of the Bureau of Transition Services at the Division of Developmental Disabilities within the Illinois Department of Human Services who coordinated survey dissemination and data collection efforts: Maria Prewitt, Glenn Robson, Gina Tinsley, Kit O’Brien Cota and Mary Spriggs-Ploessl. We feel immense gratitude toward the families of the former JDC residents who completed surveys. Special thanks to the 15 former JDC residents and 53 other stakeholders who talked with us about their experience. AUTHORS Vijay Vasudevan, PhD, Postdoctoral Research Associate, Institute on Disability and Human Development (IDHD) Amie Lulinski, PhD, Director of Rights Policy, The Arc of the United States; prior to July 1, 2014 Senior Research Specialist in Developmental Disabilities, IDHD Tamar Heller, PhD, Distinguished Professor, Department Head, and IDHD Director Randall Owen, PhD, Research Assistant Professor, IDHD and Interim Associate Director IDHD Mary Kay Rizzolo, PhD, President and Chief Executive Officer, The Council on Quality and Leadership; Prior to December 18, 2015 Clinical Associate Professor and Associate Director IDHD Natasha A. Spassiani, PhD, Assistant Professor, University of Dublin; Prior to February 2, 2015 Graduate Research Assistant, IDHD Amanda J. Schmidt, MPH, Visiting Research Specialist, IDHD Carli Friedman, PhD, Graduate Research Assistant, IDHD Suggested citation: Vasudevan, V., Lulinski, A., Heller, T., Owen, R., Rizzolo, M.C., Spassiani, N., Schmidt, A.J., & Friedman, C. (2015). An Evaluation of the Jacksonville Developmental Center Closure. Chicago: Institute on Disability and Human Development, University of Illinois at Chicago. JDC Closure Evaluation 2 CONTENTS Acknowledgements ......................................................................................................................... 2 List of Tables .................................................................................................................................. 7 List of Figures ................................................................................................................................. 8 Executive Summary ...................................................................................................................... 10 Introduction ................................................................................................................................... 17 Objectives ..................................................................................................................................... 18 Phase I: Family/Guardian Survey ................................................................................................. 18 Methods ..................................................................................................................................... 18 Survey Results ........................................................................................................................... 19 Demographics ........................................................................................................................ 19 Activities of Daily Living ...................................................................................................... 22 Pre-Move Information and Visits .......................................................................................... 24 Services .................................................................................................................................. 26 Comparing Services at JDC and Relative’s New Residence ................................................. 28 Perceived Benefits from a Move to the Community ................................................................. 30 Satisfaction with the Decision to Close Jacksonville ................................................................ 32 Initial Satisfaction Level with Decision to Close JDC .......................................................... 32 Impact JDC Closure Had on Guardians ................................................................................ 33 Choosing a New Home ............................................................................................................. 34 First Choice of New Setting for Relative .............................................................................. 34 Where Did They Move? ........................................................................................................ 37 The Closure Process .............................................................................................................. 39 Pace of Closure ...................................................................................................................... 41 Perceived Receipt of Adequate Information on Providers .................................................... 42 Respect During Closure Process............................................................................................ 43 Satisfaction with Relative’s Current Living Situation ........................................................... 45 Safety of Neighborhood......................................................................................................... 45 Satisfaction with New Placement .......................................................................................... 46 Comparing Staff at Current Residence to JDC Staff ............................................................. 46 JDC Closure Evaluation 3 Commute Time and Frequency ............................................................................................. 47 Compared to When They Lived at JDC, Is Relative Better or Worse Off? .......................... 49 Phase II: Stakeholder Interviews .................................................................................................. 51 Methods ..................................................................................................................................... 51 Findings ..................................................................................................................................... 51 Guiding Principles/Values ..................................................................................................... 52 The Closure Process .................................................................................................................. 56 Timeline ................................................................................................................................. 56 Pre-Transition Visits .............................................................................................................. 59 Communication ......................................................................................................................... 60 Key Point of Contact ............................................................................................................. 60 Communication with JDC Personnel .................................................................................... 61 Sources of Conflict/Confusion .............................................................................................. 63 Stress ...................................................................................................................................... 63 JDC Families ......................................................................................................................... 64 Family Involvement in Closure Process ................................................................................ 65 Communication with Families ............................................................................................... 67 Family Mistrust...................................................................................................................... 70 Residential Transition ............................................................................................................... 71 Barriers .................................................................................................................................. 71 Pressure from the Jacksonville Community .......................................................................... 72 Public Perception that Some Individuals with DD Cannot Live in Community ................... 73 JDC Parents’ Association .......................................................................................................... 74 Person Centered Planning ......................................................................................................... 74 Assessments ........................................................................................................................... 74 Person Centered Planning Meetings ...................................................................................... 78 Resident Information ................................................................................................................