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.

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 By all estimates, the cost to provide services to people in this outdated mode of service far exceeds the cost to provide services in the community, and research consistently demonstrates that people with ID/DD achieve better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:

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,

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 Olmstead decision.

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]