A Nationwide Study of Deinstitutionalization & Community Integration

A SPECIAL REPORT OF THE PUBLIC POLICY & LEGAL ADVOCACY PROGRAMS

E.G. Enbar /Morris A. Fred /Laura Miller /Zena Naiditch

The research on which this report is based was funded by the Illinois Council on Developmental Disabilities. Preparation and printing of this report was funded by the U.S. Department of Health and Human Services: the Administration on Developmental Disabilities. The contents of this publication are solely the responsibility of Equip for Equality and do not necessarily represent the official views of these agencies.

©Equip for Equality

June 2004

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TABLE OF CONTENTS

Introduction...... 1

Section I: State Profiles...... 6

Section II: Site Visit Reports...... 162

Section III: Legal Case Studies...... 176

Section IV: Findings...... 208

Section V: Recommendations...... 212

Glossary of Abbreviations...... 215

Bibliography...... 217

Authors’ Biographies………………………………………………………………234

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SECTION I: INTRODUCTION[1]

The State of the State: Illinois

National studies indicate a trend over the past three decades that shows a significant decrease in the number of individuals with mental retardation and developmental disabilities (MR/DD) residing in large state residential facilities. There has also been a concomitant shift of resources and people to the community; a decline in the number of state-operated institutional facilities; and an increasing average institutional cost of care.[2] Despite this national trend toward serving people with developmental disabilities in community settings, nine state-operated institutions remain open across Illinois. No institution was closed in the 1990s, and even institutional downsizing was limited during this time period.

Prior efforts to close Illinois state-operated facilities were met with significant opposition. In 1995, the Illinois Department of Mental Health and Developmental Disabilities (now the Department of Human Services) announced the closure of KileyDevelopmentalCenter. In response to pressure mainly from a strong local political constituency and the Kiley Parents’ Association, a five-year transition plan was developed to forestall the date of closure. To date, Kiley has decreased its census but has not closed. Another attempt to close a state-operated institution, the LincolnDevelopmentalCenter, occurred after the Federal Government decertified it in 2001 due to a pattern of egregious incidents of abuse and neglect.[3] Although Lincoln was eventually closed in 2002, the process was hindered because of pressures from the surrounding community, union, and some families of Lincoln residents.

A summary profile of Illinois reinforces the conclusion of a recent study by the National Council on Disability that “Illinois is a heavily institutionalized state which ranks higher than all but five other states in its rate of institutionalization of persons with developmental disabilities in public and private facilities.”[4]

ILLINOIS PROFILE[5]

Given the lack of movement to make any headway in significantly improving this profile, several key advocacy groups in Illinois are now considering litigation as the only viable remedy to promote community integration for people with developmental disabilities.

Research Methods

To confront the reality of Illinois’ record in providing services to people with developmental disabilities in the community setting, Equip for Equality (EFE) responded to a “call for investment” from the Illinois Council on Developmental Disabilities (ICDD). EFE was awarded the contract in 2002 to conduct a 50-state study of deinstitutionalization and community integration of people with developmental disabilities, referred to as the Community Integration Policy Project (CIPP). Two researchers from the Public Policy Program of Equip for Equality (EFE) were devoted to conducting the 50-state survey, with the research on litigation strategies carried out by a member of EFE’s Legal Program.

Research methods included in-depth telephone interviews with at least two individuals from every state, collecting and reviewing relevant written documents from the states, site visits to three states, and analysis of key litigation strategies used to promote community integration. The first step was to create a questionnaire that would become the prime tool for gathering information on the 50 states’ experiences with deinstitutionalization and community integration. Though the questionnaire wasquite detailed, many of the questions were open-ended. The result was that the typical telephone exchange became an extended conversation of up to two hours, with some interviewees feeling comfortable interjecting ideas at will.

Because of the length of the interview schedule, it was determined that the two researchers would each take 25 states and interview at least two individuals from different organizations in each state: This would generally be one person from the state’s department responsible for individuals with developmental disabilities and the other from an advocacy organization. Providing a quality overview of a state’s experience with community integration often required that additional written materials be reviewed to supplement the interviews. The information collected in each interview represents the particular individual’s perspective on what has happened and why. In those cases in which views have differed, every effort has been made to present a balanced account.

The content of the interviews and auxiliary materials is presented in this report in a compilation of 50 State Profiles. These profiles are meant to provide concise summaries of each state’s past and present activities, and also to serve as experiential guideposts for recommendations to promote community integration in Illinois. Each profile has been based on information from the interviews and relevant materials provided primarily by those interviewed, from websites, and from other reference sources. Once completed, the profile was sent to the interviewees for their feedback, including verification and clarification. Interviewees' responses were reviewed and necessary corrections were made. Finally, it should be noted that the profiles do not purport to cover all of a state’s activities. In some states, changes have already occurred since the state profiles were written and reviewed.

The second key feature of the research process was the site-visit conducted in three states. The final choices regarding which states to visit were decided at the completion of all the interviews. Narrowing the choice to three states was a challenge, but the final selection of Minnesota, New York, and Wisconsin was made because, taken together, these states’ experiences with deinstitutionalization and community integration provide a range of challenges that must be addressed and overcome as Illinois begins to develop strategies to increase community integration. Minnesota’s accomplishments in the community integration field were noted by other states as representing a model to emulate. New York, with a diverse demographic similar to Illinois, has had a long history of overcoming barriers to deinstitutionalization and maximizing Medicaid to build community resources. Finally, Wisconsin offers the opportunity to observe the dynamic process of the first planned significant downsizing of a state-operated institution in that state.

During the site visits, which took place in April and May 2003, representatives from the state departments responsible for individuals with developmental disabilities, advocates, self-advocates, and service providers were included in the groups of those interviewed. In addition to providing insights into community integration and the various state programs for individuals with developmental disabilities, these representatives also made recommendations on how to support initiatives for community integration. Staff also visited group homes, day programs, employment sites, and in the case of Wisconsin, the facility designated for closure. In addition to a separate section describing each site visit, relevant information gathered from these visits has been incorporated into the respective State Profiles.

The third and final methodological component is the analysis of the main legal strategies that have been used to require states to initiate or increase community integration. In almost all of the states, litigation at some stage has played a role in the downsizing or closure of institutions. Litigation has also challenged policies that limit access to Medicaid home and community services, and/or securing community services in the most integrated settings.[6] In addition to gathering material on these strategies, several states’ lawsuits have been chosen for in-depth analysis, including interviews with the principal attorneys, to evaluate the long-term impact of the litigation.

Contents of the Report

The report is divided into five key sections:

Section I presents the 50 State Profiles. Each profile may differ in types of information presented, since not all the same issues were considered equally relevant in every state, It was possible, however, to provide some consistency by grouping that information into the broad categories that encompass the range of data gathered. The last category, Interviewee Reflections, presents a selection of additional comments that the interviewees considered as important lessons or reflections for guiding any future plans for community integration.

  • Section II consists of summaries of site visits to Minnesota, New York, and Wisconsin.
  • Section III presents in-depth Legal Case Studies of three states, analyzing the litigation strategies used and the roles that litigation served in shaping systemic changes.
  • Section IV presentsthe Findings of the Community Integration Policy Project, a composite picture of national trends based on information from the two prior sections, as well as additional material from the interviews and other material that was collected during the research.
  • Section V presents a series of concrete Recommendations to key state officials for realizing the goal of community integration in Illinois.
  • As addenda, there are a Glossary of General Abbreviations and Acronyms and a Selected Bibliography chosen from materials used as references for the State Profiles, for those readers interested in further examining particular aspects of state or national policy on community integration.

Final Note

During the interview process, our mentioning the fact that we were conducting a 50-state qualitative study to be completed in six months (later extended two months) often elicited surprise from those experts and stakeholders who understood the complexities of the problems we were undertaking to analyze. Our interactions with the majority of those people interviewed were gratifying. They were both gracious with their time and patient during the lengthy conversations. Although opinions varied about the strengths, weaknesses, and degrees of success of different strategies used by the states, one thing became apparent to us: No matter where individuals placed themselves in terms of their position on the institution/community continuum, the dedication and care of these people provide a ray of hope for ultimately finding a common ground that will benefit people with developmental disabilities in our state.

SECTION I: STATE PROFILES

ALABAMA

# State-Operated Institutions Remaining:4Approximate Census: 400

# State-Operated Institutions Closed: 1Closed Since 1993: 1

Service System:

The Division of Mental Retardation (DMR), of the Alabama Department of Mental Health and Mental Retardation (DMH/MR), provides a comprehensive service system that is managed through five geographic regions. Services in the community are contracted through a variety of local providers.

Alternative Use(s) for Closed Institution(s):

No usage is being made of the Glen Ireland property since the closure in 1996.

Institutional Closure Information:

  • The landmark class action lawsuit, Wyatt v. Stickney, filed in 1970, is the longest running suit having to do with the right to treatment for persons involuntarily committed to a state institution. In 1972, the judge’s ruling established minimum standards for providing treatment and habilitation in state mental health and mental retardation facilities. The Settlement Agreement signed in 2000 requires implementation of a three-year plan to downsize state-operated psychiatric hospitals and developmental centers and significantly expand community-based options.
  • Glen Ireland was closed in two months’ time with no advance public announcement, as the DMR did not want groups to build an alliance to oppose the closure. There were approximately 50 residents living at Glen Ireland at the time the closure was announced.
  • The Governor approved the closure. There was no legislation about closure; however, legislators were informed before the press.
  • The DMR was responsible for bringing about the closure. There was also an internal Advocacy Division within the DMR that worked closely with families.
  • There is now a plan, put forth by the Commissioner of the DMH/MR, to consolidate three of the four remaining facilities incrementally throughout the next fiscal year. Hearings are occurring statewide, and efforts are being made to keep everyone informed.

Opposition:

  • Two months prior to the Glen Ireland closure, the DMR informed the consumers, families, and employees of the institution. The families were worked with one by one. The DMR said to a family member, “Let’s not worry about these buildings; let’s find out the best things for Michael.” The emphasis was on planning for the individual.
  • Friends of Glen Ireland (a parent/guardian organization), the union, and the State Employees Association were all opposed, but the closure plans were too far along to have any impact.
  • When the announcement was made, the DMR offered other state employment to union workers. Of those employees laid off, there were eighty who could not find other jobs. Some workers followed residents to private providers in the community, where the salaries are comparable, but the employee benefits are not.

Transition and Community Living:

  • The Glen Ireland staff did a lot of training with community providers that was very individualized and based on person-centered planning. Additionally, the DMR worked with providers to find the best match for residents.
  • Most of the residents moved to group homes of three people or less. Some residents moved to a smaller type of community-supported living arrangement or lived with staff in a foster care setting. Fewer than five of the 200+ persons moved to another state facility.
  • The size of residence depended on the individual. Consideration was also given to physical disability issues and geographic proximity to one’s family. People made several visits before finally moving to their community residence.
  • Individuals with challenging behaviors have been difficult to serve in the community, as there are not enough resources or expertise.
  • Dental services and transportation were identified as hard services or needs to fill. The transportation issue impacts on community integration.
  • The Office of Continuous Quality Improvement (CQI) monitors and coordinates the statewide Mental Retardation CQI System for developmental centers and community service.
  • The state Advocacy Division does routine monitoring to ensure that people’s rights are not violated.
  • Case management, support services, residential services, and day services are contracted through a variety of local providers. These services are purchased through the DMR.

Economics:

  • Economics did not play a major role in determining the type of community services that were offered to replace Glen Ireland.
  • 97% of the state money is being used for the federal Medicaid match.
  • State funds, Medicaid waiver federal funds, Part C federal funds from the U.S. Department of Education, and other funding sources provide major resources in the delivery of community services.

Noteworthy:

  • Three of the four remaining institutions have diminished in population to approximately 60-70 residents each.
  • Each developmental center dedicates five beds to be used for community respite services.
  • In April 2003, Governor Bob Riley was quoted saying that “the state could save $40 million or more by closing half a dozen state mental health facilities and caring for patients in other ways.” The DMH/MR Commissioner has recommended closing three of the four existing developmental centers and giving residents a choice of either moving to the remaining open facility or to a residential setting in the community. The Commissioner said that she would begin meeting with families, employees, and legislators to describe the consolidation plan she said will be implemented next year. She also asserted that employees at affected centers would be offered jobs or training assistance. (Tuscaloosa News, April 23, 2003)

Interviewee Reflections:

  • Providers tend to develop programs by buying properties. Zoning ordinances are a problem. It’s better for people to be served in a smaller apartment or their own home, but there’s not much choice offered. It’s usually a two- to three-person home in a neighborhood, and there are sometimes issues related to “Not in my backyard….”
  • Every facility has to be approached differently. It’s best to get to know staff and families to develop a strategy. Documentation should be done of the transition process, the stories of what was happening to people, and consumer satisfaction. Gradually downsize!

ALASKA

# State-Operated Institutions Remaining: 0

# State-Operated Institutions Closed: 1 Closed Since 1993: 0

Service System:

The Developmental Disability Program is now part of the Division of Mental Health and Developmental Disabilities of the Department of Health and Human Services; in July 2003, it will however become part of the Division of Senior and Disability Services. It administers Medicaid waivers and DD Community Grants for services delivered by 36 community organizations in over 100 different communities across the state.

Alternative Use(s) for Closed Institution(s):

Harborview, located in Valdez, is still a state building and is used to house different state organizations.

Institutional Closure Information:

  • There were no admissions to Harborview after 1988, and by 1994, it was felt that anyone could be served in the community. A few people, with complicated service needs, did not leave until 1997 in order to have the time to build appropriate assisted-living homes.
  • There was a gradual elimination of the institutional budget. The time frame for closure was approximately two years.
  • By the time of the final closure, there had been six years to demonstrate that people could live in the community. Because Alaska is 75% rural and over 50% Native American, it was important to serve people in the communities where they live.
  • Alaska has no community ICFs-MR, no institutions, and sends no one out of state, even though the waiver requires them to offer the alternative of going to an institution. A few individuals have been sent out of state for short-term treatment when such treatment is not available in the state.

Opposition: