Deinstitutionalization: Unfinished Business (Companion Paper to Policy Toolkit)

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Unfinished Business 


Unfinished Business 




Introduction: Unfinished Business

The unfinished business of closing state-run institutions and other public and private institutional settings that have traditionally served people with intellectual disabilities and developmental disabilities (ID/DD) is an important first step and should be a top public policy priority in every state where such institutions exist. Equally important is ensuring that these people have access to services and supports in their communities that will enable them to lead rich and meaningful lives.

In reviewing the history of the movement to close institutions and examining efforts to focus the nation’s resources on ensuring that people with ID/DD have access to community living, two key truths emerge:

  • People with ID/DD have a legal right to live in the community and to receive necessary services and supports.
  • Life in the community provides opportunities for dignity, freedom, choice, and a sense of belonging that are not possible in an institutional environment.

These truths are at the core of both the Americans with Disabilities Act (ADA) and the Olmstead decision. The courts have consistently upheld a person’s right to receive services in the least restrictive environment possible. Closing institutions is not about “dumping” people into the community, nor is it about closing large institutions and moving people to smaller institutions or institution-like settings. Closing institutions is about developing strong and inclusive community supports and allowing people to have control over how they live their lives.

In 2011, the National Council on Disability (NCD) took a position on the evolving definition of an institution. NCD focused on the importance of the number of people who live in the same home and defined institutional settings as housing situations in which more than four people with ID/DD disabilities live in the same housing unit. This position reflects the belief that a smaller housing situation offers an opportunity for a higher quality of life.

This paper discusses the lessons learned regarding how to close large institutions, but it focuses on the movement to smaller community living settings that meet NCD’s new definition. Regardless of the size of the institution, bringing people back into the community is only the beginning of the quest to help them achieve the highest possible quality of life. The paper examines some of the factors that advocates and self-advocates believe are important in defining “community living” and looks at how quality of life in the community can be and is being measured.

There is a growing consensus that true community living is defined by the extent to which people with ID/DD can choose how they spend their time, interact with others outside the home, and make decisions that affect their daily lives and schedules.

The paper identifies the most effective approaches and supports to help people with ID/DD transition from institutional settings of all sizes. With a focus on quality of life and community inclusion, the transition is certainly possible for both individuals and states.

This section, “Deinstitutionalization: The Right Thing to Do,” reviews the history of life in institutions; it includes personal reflections of people with ID/DD who remember what institutional life was like and reflections on their lives in the community. This section also looks at the civil rights history of the deinstitutionalization movement and provides an overview of the evolving definition of “institution.”

“Evolution: From Institution to Community” tracks the history of the movement from institution to community and identifies the role Medicaid has played in the development of home and community-based service systems and national deinstitutionalization efforts.

“Institutions: Definitions, Population, and Trends” paints a picture of the current state of the ID/DD housing system and explains that, although significant progress has been made, progress has been uneven and the job is incomplete.

“Deinstitutionalization: Goal and Strategies” describes what the deinstitutionalization movement seeks to accomplish and outlines specific actions that interested parties can take to bring us closer to protecting all the rights of each and every American citizen.

“Forging Ahead: Developing a Plan and Building Community Capacity” describes the basic elements of a closure and transition plan, as well as strategies for building a community’s capacity to provide vital services and supports to community members.

“Overcoming Misconceptions: Myths and Realities” looks at key misconceptions that still exist in states and communities; these misconceptions can influence stakeholders if they do not have access to accurate information.

“Case Studies: Closing Institutions and Building Community Support Systems” looks at the closure experience in two states: Oregon, which has closed all state institutions, and Georgia, which has just begun the process as part of its settlement agreement with the Department of Justice (DOJ 2011).

“Reflections: Individual Voices” highlights the experiences of people with disabilities in Georgia and Oregon who previously lived in institutions and now live in the community. Their stories are told in their own voices.

This paper is based on an extensive literature review and input from professionals, stakeholders, self-advocates, and government representatives obtained through interviews, focus groups, and the project’s panel of experts. A companion toolkit provides more in-depth discussion of these important issues. The toolkit can be accessed at:/publications/2012/DIToolkit/.


Deinstitutionalization: The Right Thing to Do

Deinstitutionalization is Possible

Ten states and the District of Columbia have no large state institutions and have found ways to provide care in the community to all people with intellectual disabilities or developmental disabilities (ID/DD), regardless of the severity of their disability. However, the remaining states continue to maintain facilities and deliver services in institutions, despite most families’ preference for community-based services. As of 2009, 122,000 people with ID/DD were on waiting lists for residential services.[i] Even though they met the eligibility criteria for institutional care, which would be provided at no cost to them, they and their parents or caretakers opted against that setting, clearly rejecting institutional placement.

“It is pretty sad that you are put in prison because you have a disability.”

Most of these facilities, often called “developmental centers,” were built between 50 and 100 years ago and were designed for many times the number of people they now house. By all estimates, the cost to provide services to people in this outdated mode of service far exceeds the cost to provide services in the community, and research consistently demonstrates that people with ID/DD achieve better outcomes in community settings.[ii] Deinstitutionalization is a human and civil rights issue. People should not be required to give up their rights to receive the services they need.

Under the Americans with Disabilities Act (ADA, 1990), the Supreme Court’s decision in Olmstead v. L.C. (1999), the New Freedom Initiative (NFI, 2001), the Developmental Disabilities Assistance and Bill of Rights Act (2000), and the Rehabilitation Act of 1973, community living should be the rule, rather than the exception.

The institution model costs $6 billion a year at a time when less costly and more effective service delivery models are available. Spending scarce resources on expensive and inhumane service models deprives people with disabilities of access to appropriate services.

Deinstitutionalization is the Right Thing to Do

Oregon helps us put a human face on this issue. The state closed all its institutions in 2007—an example of committed and creative deinstitutionalization. Oregon advocates have spent considerable time and energy documenting the reasons why this effort is so important, including the human costs and civil rights issues related to institutionalization. In Erasing Fairview’s Horror, Sara Gelser says, “As the visible reminders of Fairview disappear, we must ensure that its history is not forgotten or sanitized.”[iii]

That history includes labeling individuals with developmental disabilities “inmates,” performing more than 2,600 forced sterilizations, and, according to Governor John Kitzhaber, using “inhumane devices to restrain or control patients, including leather cuffs and helmets and straightjackets, and inappropriately high dosages of sedatives and psychotropic medications.”

A study published in the American Journal of Forensic Medicine and Pathology found that between 1963 and 1987, Fairview residents were more than twice as likely to die from unnatural causes as noninstitutionalized people in Marion County.[iv]

The voices of people with developmental disabilities who lived in Oregon’s institutions serve as stark reminders of the importance of this movement:

“I was handicapped, but it made me sicker to be there. It was like a prison. Handcuff. Shut door.”

“They were strict at Fairview. You got beat up, yelled at. They put us in closets.”

“If you don’t behave yourself, they’d get you with the scalding hot water.”[v]

Oregon remembers but is moving on. Perhaps this progress is best illustrated by the experience of one person who returned to Fairview with Michael Bailey, statewide community organizer for the Community Partnerships Project, when the institution closed its doors in 2000. After their visit Bailey said,

“We drove off with one of the former ‘inmates.’ She had to return to her full-time job and at the end of the day would go home to her own apartment. There she would be alone with the memories of a life that had once labeled her a ‘victim of…’ and an ‘inmate’ and now, finally,… a respected, financially independent and successful professional woman.”

These experiences were well documented in Oregon, and instances of abuse continue to occur in institutions across the country. For example, the 2009 Texas “fight club” incident—in which institution workers forced residents to fight one another while employees taped the fights on their cell phones—made national news. In 2007 the Atlanta Journal-Constitution published an exposé of state mental health hospitals that revealed more than 100 suspicious patient deaths during the previous five years.[vi] The 2002 death of Brian Kent at Kiley Center in Waukegan, Illinois, revealed a pattern of neglect caused by unprofessional attitudes, administrative indifference, lack of competence, and caregiver fatigue.[vii]

Deinstitutionalization is a Civil Right

Clearly, deinstitutionalization and the development of a strong community-based system that helps people with ID/DD live in the community is both morally and ethically the right thing to do, but it is also a civil rights issue: The law supports the individual right to live in the community.

In crafting the ADA of 1990, Congress found that “the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.”

In 1995, two residents of institutions in Georgia sued the state, claiming they had the right to receive care in the most integrated setting appropriate and their unnecessary institutionalization was discriminatory, in violation of the Americans with Disabilities Act (ADA). Eventually the case was heard by the United States Supreme Court. In 1999, the Court ruled in the case of Olmstead v. L.C., 527 U.S. 581 (1999), that unnecessary institutionalization of people with disabilities constitutes discrimination under the ADA (Olmstead v. L.C., 527 U.S. 581).

The decision included some definitive language about institutionalization. It said,

  • Unjustified isolation, we hold, is properly regarded as discrimination based on disability.
  • Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.
  • Confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.

The Olmstead decision requires community placement when the following three conditions are met:

  • The person can handle or benefit from community placement,
  • The transfer is not opposed by the affected person, and
  • Community placement can be reasonably accommodated (i.e., would not impose a fundamental alteration, which the state must prove).

The Olmstead case focused on people who were currently in an institution and seeking community-based care. Subsequent cases have applied Olmstead to people at risk of institutionalization, including those on waiting lists, arguing that cuts in community services that would force a person into an institution violate the ADA.

In 2009, the Civil Rights Division of the Department of Justice (DOJ) launched an aggressive effort to enforce the Olmsteaddecision.

President Obama issued a proclamation launching the “Year of Community Living,” and has directed the Administration to redouble enforcement efforts. The Division has responded by working with state and local government officials, disability rights groups and attorneys around the country, and with representatives of the Department of Health and Human Services, to fashion an effective, nationwide program to enforce the integration mandate of the Department's regulations implementing Title II of the ADA.[viii]

A technical assistance guide has been created to help people understand their rights and to help public entities understand their obligations under the ADA and Olmstead.[ix]

Evolution: From Institutions to Community

Over the past 40 years, more than 230,000 people with intellectual and developmental disabilities were discharged from state institutions. As of June 30, 2009, 33,900 remained institutionalized. This movement from institutions to community is heavily influenced by the role of Medicaid funding in each state’s plan.

Institutions and the ICF/DD Program

Large State Institutional Settings

The national peak of institutionalization for people with ID/DD was in 1967, when 194,650 people were housed in large state institutions and an additional 33,850 were housed in state psychiatric facilities.[x] However, even at the height of institutionalization, most people with developmental disabilities lived with families, as they do today. Families had few other options. Most residential care outside the family home was provided in large state-run facilities and financed entirely by state, local, and private funding.

In 1971, in response to evidence of the horrific conditions in which people with ID/DD were being warehoused, Congress established the Intermediate Care Facilities for the Developmentally Disabled (ICF/DD) program (formerly Intermediate Care Facilities for the Mentally Retarded (ICF/MR))[xi] as a Medicaid benefit. The ICF/DD program was offered as an optional Medicaid program. A state could opt to include the program in its Medicaid plan, or it could continue to fund its institutions without federal financial participation. However, once a state included ICF/DD program dollars in its plan, it had to provide the service to anyone who was eligible for Medicaid services.

By the 1980s, all 50 states had adopted the ICF/DD program. In exchange for federal Medicaid funds, institutions had to comply with minimum federal requirements for safety, staffing levels, appropriate active treatment, qualified professional staff, and many other conditions.

Small State Institutional Settings

The ICF/DD program focused on large state institutions. However, federal regulations and guidelines made it clear that the same level of care could be delivered in state and private facilities that served 16 or fewer people. These smaller facilities offered another option for people with ID/DD. They were typically located in the community and were managed and financed through the state’s optional ICF/DD program. However, they provided a regulated program of services in a formally certified setting, which meant that residents were still living an institutional life.

Community and the HCBS Waiver

Unlike the institutional setting, the community setting starts with recognition that people with ID/DD should have control over the delivery of services and supports, as well as the location and setting in which they receive them. These settings vary in size and type, but they are substantially smaller than the institutional setting. They include both in-home with family settings and out-of-home group settings, and offer a variety of services and supports.

In 1981, Congress established the Medicaid Home and Community-Based Services (HCBS) waiver program. The HCBS waiver allows states to receive federal matching funds for a variety of residential services and supports to Medicaid beneficiaries who would otherwise require institutional care.

By 2009, 48 states and the District of Columbia operated 125 different HCBS waivers for people with DD, including waivers serving the broad population of people with DD and waivers targeting people with particular conditions, such as autism spectrum disorders and intellectual disabilities. The two other states, Arizona and Vermont, provided similar services as part of research and demonstration waivers authorized by Section 1115 of the Social Security Act.[xii]

Community-based settings are available in a variety of types and sizes, and with various characteristics. The relationship between provider and consumer, the number of residents, and the style of service and support delivery are among the attributes that differentiate the choices available through the HCBS waiver.

Community-based setting types include specialized institutional facility, group home, apartment program, independent home/apartment, parent/relative’s home, foster care/host home, and nursing facility.

Additional Community Program Funding

The Federal Government, through changes in the Medicaid program, has promoted community living through several initiatives in the past seven years, including the following:

Deficit Reduction Act (DRA) of 2005: This legislation created a new Medicaid option that covers certain HCBS waiver services without requiring states to go through the lengthy waiver application and approval process.[xiii]

Money Follows the Person (MFP), 2005: The MFP demonstration, first authorized by Congress as part of the 2005 DRA and then extended by the 2010 Patient Protection and Affordable Care Act (PPACA), provides grants to states to (1) transition people from nursing homes and other long-term care institutions (such as ICF/DDs) to homes, apartments, or group homes of four or fewer residents, and (2) change state policies so that Medicaid funds for long-term care services and supports can follow the person to the setting of his or her choice. As of 2010, the Center for Medicare and Medicaid Services (CMS) had awarded MFP grants to 30 states and the District of Columbia, and the demonstration is authorized through 2016.[xiv] To ease the transition to the community, the state provides MFP participants with a richer mix of services than is available to regular waiver participants, and states receive an enhanced federal match for providing these additional services.

American Recovery and Reinvestment Act of 2009 (ARRA): ARRA provides enhanced federal matching funds that enable states to continue funding HCBS waivers and other Medicaid services. The maintenance-of-eligibility requirement in ARRA restricts state options for reducing eligibility for services.[xv]

Community First Choice Option (2011): This proposed rule implements Section 2401 of the Affordable Care Act (ACA), which establishes a new state option to provide home and community-based attendant services and supports. The Community First Choice Option adds a new section 1915(k) to the Social Security Act that allows states to provide home and community-based attendant services and supports under their state plans. First Choice, available beginning October 1, 2011, allows states to receive a 6 percentage point increase in federal matching payments for expenditures related to this option.

Community Choice Act (not enacted): The Community Choice Act (CCA), introduced in Congress in 2007 and again in 2009, would require state Medicaid plans to cover community-based attendant services and supports for people with disabilities, regardless of age or disability. The CCA would allow the dollars to follow the person and would allow eligible people or their representatives to choose where they would receive services and supports. Any person who is entitled to nursing home or other institutional services could choose where and how these services were provided. Despite advocacy efforts, the bill never got out of committee and the concept was not included in the 2010 health care reform.[xvi]