The Right to Community Integration for People with Disabilities Under United States and International Law

The Right to Community Integration for People with Disabilities

Under United States and International Law

By Eric Rosenthal and Arlene Kanter ^¹

Introduction

In many countries of the world today, people with disabilities are deprived of their rights and liberties, excluded from society, and blamed for many of society's most unsolvable problems, such as crime and homelessness. People with disabilities, particularly people with mental disabilities, may be involuntarily locked away in institutions, subjected to abuse and neglect, and deprived of their right to live as equal citizens in the community.^² Governments that perpetuate such mistreatment are rarely subject to international scrutiny or recrimination. Although some international laws that prohibit mistreatment and discrimination against people with disabilities have been adopted, no specific binding international human rights convention exists to protect explicitly the right of people with disabilities to live in the community or to be free from indeterminate institutionalization. Yet, there is a growing recognition that recent interpretations of United States law as well as international human rights law provide support for the right of an individual with a disability to live and receive any necessary treatment in the community, rather than in an institution.^³

In Olmstead v. L.C. ex rel. Zimring, ("Olmstead") the United States Supreme Court held that it is discrimination to deny people with disabilities services in the most integrated setting appropriate.^⁴ Accordingly, the Court found that individuals with mental disabilities are entitled to live in the community, whenever appropriate, and to receive treatment there, rather than in institutions.^⁵ The Court reached its conclusion by relying on the non-discrimination provisions of the Americans with Disabilities Act of 1990.^⁶ The Court's reasoning, that institutionalization of people with disabilities who are capable of living in the community may constitute unlawful discrimination under the Americans with Disabilities Act (ADA), may serve as a model for a similar recognition under international human rights law. In fact, the United Nations Committee on Economic, Social, and Cultural Rights recently adopted General Comment 5^⁷ which provides a new and bold interpretation of the right to protection against discrimination under the International Convention on Economic, Social, and Cultural Rights by implying a right to community integration within the anti-discrimination provision of the Covenant.^⁸

Indeed, if the reasoning of the United States Supreme Court in Olmstead were to be used as a guide in interpreting the non-discrimination provisions of such international covenants as the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights, it would have a major impact on the lives of people with disabilities who are unnecessarily confined in institutions throughout the world today. Although no specific international covenant exists on the rights and treatment of people with disabilities, recent international human rights laws, documents and interpretations may establish the right of people with disabilities to live in the community and to be free from institutionalization.

The first section of this chapter discusses the decision of the United States Supreme Court in Olmstead, in which the Supreme Court upholds a right to community integration for people with mental disabilities as a form of discrimination protection provided under Title II of the Americans with Disabilities Act. The second section of this chapter discusses existing international human rights laws and interpretations, including specific provisions addressing the right of individuals with disabilities to community integration and the rights of those detained in institutions. The chapter concludes by suggesting that the Supreme Court's reasoning in Olmstead, together with existing international human rights laws and interpretations, provides support for the right of people with disabilities to be free from indeterminate institutionalization and to live in the community as a form of protection from discrimination under international law.

Olmstead and the Emerging Right to Community Integration

In the United States, federal statutes and case law have established limits on the extent to which people with disabilities, and mental disabilities, in particular, may be institutionalized against their will.^⁹ Following the horrors of World War II, advocates for social security and rehabilitation sought to expand services for people with disabilities in the community, away from segregated institutions. As a result, in 1954, the United States Congress passed the country's first broad-based rehabilitation legislation, the Vocational Rehabilitation Amendments, which expanded rehabilitation programs available to people with a variety of disabilities.^¹⁰ Two decades later, in the midst of the civil rights movement, Congress passed the Rehabilitation Act of 1973, which prohibits discrimination against people with disabilities in federal programs, as part of the larger movement to achieve community integration and inclusion of people with disabilities in society.^¹¹

In 1990, when the United States Congress passed the Americans with Disabilities Act ("ADA"), it recognized the long history of mistreatment to which people with disabilities had been subjected. As the preamble of the ADA states, "individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness . . . based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society."^¹² Accordingly, the ADA prohibits discrimination in a range of areas including employment, public life, transportation, telecommunications, and public accommodations^¹³ The law recognizes that the "[n]ation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.^¹⁴

When Congress passed the ADA in 1990, by a large majority and with bipartisan support,^¹⁵ it recognized that its predecessor law, the Rehabilitation Act, had not been sufficient to eradicate discrimination against people with disabilities. As Congress declared in the introduction to the ADA, "despite some improvements, ... discrimination against individuals with disabilities continue[s] to be a serious and pervasive social problem.^¹⁶

Indeed, throughout history and throughout the world, societies have promoted or acquiesced in discrimination against people with disabilities.^¹⁷ Discrimination has taken the form of preventing qualified applicants with disabilities from obtaining or retaining employment, failing to make public transportation accessible or provide access to public places, and isolating people labeled mentally ill or developmentally disabled in institutions, often subjected to forced labor, deprived of liberty without due process, and stripped of their dignity as well.

Undoubtedly, one of the most egregious forms of discrimination is the involuntary segregation of people in institutions. When it enacted the ADA, Congress acknowledged that segregation and isolation of individuals with disabilities continues even today. Although people with disabilities have made progress towards equality and inclusion in workplaces, neighborhoods and recreational activities, many individuals with disabilities remain isolated in their own neighborhoods, or even worse, segregated in institutions. In short, even with the passage of the ADA, men, women and children labeled as disabled remain confined in institutions, often even after the state's own professionals determine that such individuals are capable of living in the community, with or without support.

Despite the acknowledgment of the continued segregation of people with disabilities in institutions, the ADA, considered the "Emancipation Proclamation" for people with disabilities, does not mention involuntary institutionalization. Yet, Title II of the ADA does prohibit discrimination in the provision of public services, including mental health services.^¹⁸ Thus, based on this anti-discrimination language of Title II, the United States Supreme Court in Olmstead^¹⁹ concluded that undue institutionalization may constitute illegal discrimination against individuals who are capable of living in the community, and receiving mental health services in the community, rather than in institutions.

Title II of the ADA states that "no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.^²⁰ The Department of Justice regulations that implement this anti-discrimination provision mandate that "[a] public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.^²¹ The law's implementing regulations also provide that "a public entity shall make reasonable modifications in policies, practices, or procedures . . . unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the services, program, or activity.^²²

In Olmstead, the United States Supreme Court was asked to interpret the scope and coverage of Title II of the ADA with regard to the permissibility of continued institutionalization. The case involved a woman, known as L.C., who was labeled with mild mental retardation and schizophrenia, and who sued the state of Georgia, claiming that Title II of the ADA protects her right to be free from discrimination in the receipt of services. She sought to receive whatever treatment she might need in the community, rather than confined in a state psychiatric hospital^²³ Soon after her case was filed, another patient in the state institution, known as E.W., intervened to join in the case with an identical claim^²⁴

The State of Georgia argued that it was not discriminating against these women by confining them in the state's psychiatric hospital. Rather, Georgia claimed that it had not provided services in the community to these women because it lacked the funds for such placements and that, in any event, such placements would "fundamentally alter" its mental health system. The district court held that Georgia's action violated Title II of the ADA^²⁵ The Court of Appeals for the Eleventh Circuit affirmed the decision, and remanded the case to the district court to determine whether the alleged additional expense to Georgia resulting from to community placement would fundamentally alter the state's mental health program^²⁶ On remand, the district court found that the cost of providing placement in the community for these two women would not be excessive in relation to the State of Georgia's overall mental health budget^²⁷

The United States Supreme Court began its analysis of the case with an overview of the relevant federal legislation which protects the right of individuals with disabilities to community integration, including the 1975 Developmentally Disabled Assistance and Bill of Rights Act (DD Act) and Section 504 of the Rehabilitation Act. The DD Act uses hortatory language to indicate that states "should" provide to individuals with developmental disabilities the right to receive treatment in the setting least restrictive to the individual's personal liberty^²⁸ Section 504 of the Rehabilitation Act of 1973 uses stronger mandatory language to proscribe discrimination against people with disabilities. It states that "[n]o otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. ^²⁹

The Supreme Court then reviewed the legislative history of the ADA, which devotes considerable attention to the law's potential for inclusion of people with disabilities in the community^³⁰ The House Report on the ADA, for example, recognizes the importance of integrating individuals with disabilities into the community when it states that "[t]he ADA is a comprehensive piece of civil rights legislation which promises a new future: a future of inclusion and integration, and the end of exclusion and segregation.^³¹ Indeed, the ADA remains consistent with the overriding principle of deinstitutionalization, which is that individuals with mental disabilities are entitled to as much independence as possible and to receive treatment in appropriate settings.

Evidence of the ADA's applicability to institutionalization is found also in the Act's implementing regulations, which state specifically that a public entity shall administer services, programs and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities^³² Accordingly, a public entity is required to make reasonable modifications in policies, practices or procedures when necessary to avoid discrimination on the basis of disability, unless the entity can demonstrate that it fits within the provided defense because the modifications would "fundamentally alter the service, program or activity.^³³

Based on this language, a majority of the United States Supreme Court held that continued confinement of people with mental disabilities in institutions may constitute prohibited discrimination. In an opinion written by Justice Ginsberg, the Court concluded that Title II of the ADA requires states to provide community placement in lieu of institutional placement so long as three conditions are met. These conditions are first, that the state's treatment professionals determine that such placement is appropriate; second, that the individual does not oppose the placement; and third, that the state can reasonably accommodate the placement without fundamentally altering its program, given the state's resources and the needs of other individuals with mental disabilities.^³⁴Although individuals with disabilities have long sought legal protections against institutionalization as a form of discrimination, it was not until the Supreme Court's decision in Olmstead that unnecessary institutionalization was found to constitute illegal discrimination under the Americans with Disabilities Act.

The Supreme Court rejected the state's claim that the plaintiffs did not experience discrimination "by reason of" their disabilities ^³⁵ Instead, the Court held that the undue segregation of individuals with mental disabilities in institutions constitutes discrimination in this case. ^³⁶ The Court reasoned that undue institutionalization is discriminatory because it results in dissimilar treatment settings for individuals with mental disabilities vis-a-vis individuals without mental disabilities. It requires people with mental disabilities to forego life in the community and to remain confined to institutions in order to receive needed medical health treatment, unlike people without mental disabilities, who may receive medical treatment in the community.^³⁷ The Court considered this dissimilar treatment of institutionalized individuals in comparison to those without mental disabilities, who do not have to relinquish participation in community life to receive medical services, as illegal discrimination under Title II of the ADA^³⁸

But the Court found discrimination for another reason as well. The Court explained that the unnecessary institutionalization of an individual with a disability constitutes dissimilar treatment or discrimination because such confinement itself perpetuates unwarranted assumptions that the individual is incapable of participating in community life^³⁹ Moreover, this unnecessary confinement diminishes the individual's ability to have a social life and family relations, to receive an education, or to become economically independent through employment. Thus, undue institutionalization is discriminatory not only because it treats people with and without disabilities differently in terms of their access to mental health treatment, but also because it perpetuates negative stereotypes of people with mental disabilities as "incapable or unworthy of participating in community life," and deprives them of "everyday life activities" such as "family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.^⁴⁰ Accordingly, the Supreme Court held that the unjustified isolation of the plaintiffs, L.C. and E.W., in state institutions constitutes prohibited discrimination under Title II of the ADA^⁴¹

The rights established under Olmstead, however, are not absolute. Although Olmstead endorses the well-established principle that individuals who receive community treatment benefit more than people who are confined in institutions,^⁴² it nonetheless allows the state to present as a defense the argument that the cost of community treatment is prohibitive. Such a defense, based on cost factors alone, seems highly inappropriate given the liberty interests at stake. The potential for abuse and the lack of rights afforded people confined in institutions is a human rights issue, and cannot and should not be relegated to a cost-benefit analysis.

However, even considering cost factors, little data exists to support a state's argument that it is more costly to provide programs and treatment in the community than to institutionalize someone considered in need of treatment within the United States today. Indeed, studies now suggest that community based treatment for many people with mental disabilities in the United States is less costly than institutionalization, and that treatment is usually more effective in a community setting as well. For example, in a review of fourteen studies in which individuals were placed randomly in institutional settings and community based settings, researchers Kiesler and Sibulkin determined that "the most general conclusion one can draw from [these studies] is that alternative [community] care is more effective and less costly than mental hospitalization." ^⁴³ The study goes on to say that "regardless of the outpatient setting used, the outcome indices by which their effectiveness is measured, for the patient population using them, alternative care programs have universally provided more positive results more cheaply than institutionalization."^⁴⁴ In other countries, however, the cost effectiveness argument may be less relevant since so few resources are placed in institutions in the first instance. Therefore, arguing for moving such resources from the institution to the community will not ensure the development of quality community-based programs. Instead, additional resources will be needed to develop and sustain new community-based programs in certain areas in the United States, as well as in other countries.^⁴⁵

But even more troubling than the state's efforts to confine people in institutions on the basis of the cost of treatment, is the Olmstead Court's decision to grant nearly unfettered discretion to mental health professionals.^⁴⁶ Olmstead upholds the right of an individual with a mental disability to live in the community, but only when such placement is considered appropriate to the individual's needs, as judged by a treating professional. The treating professional, not the individual with a mental disability (who must be presumed to be competent unless found otherwise), is given the right to decide what treatment is provided, whether such treatment is voluntary or coercive, where such treatment will take place, and in the end, where the person receiving treatment may live, who they will see, and what they will do each day.^⁴⁷ By endorsing professional discretion in this way, the Olmstead Court abandons its full commitment to the non-discrimination principles of the ADA, which requires society to treat all individuals – including those seeking mental health treatment – as people who are capable of independent judgment with the right to dignity, equality, and self-determination^⁴⁸

Nonetheless, the Olmstead decision remains a powerful statement that the ADA prohibits unjustified institutionalization as discrimination. The decision acknowledges the long overdue benefits of community living for those who have been deprived of the opportunity to have ordinary life experiences by prolonged involuntary institutionalization. Olmstead recognizes not only the right to community integration for individuals with disabilities in the United States, but also the potential, at least, for an end to involuntary institutionalization. It is the first decision by the United States Supreme Court, or likely any high court of any country, which concludes that undue institutionalization may constitute unlawful discrimination. As such, even with its limitations, the Olmstead decision promises to spur further efforts to establish the right to community integration and inclusion for all people with disabilities, both through the United States legal system and under international law, which we will now address.

II. The Prohibition of Discrimination Under International Human Rights Laws

No binding United Nations convention exists which guarantees the right of people with disabilities to receive treatment in the community rather than in institutions.^⁴⁹ Similarly, no international convention currently exists which mandates, by its terms, that people with disabilities are entitled to be integrated into the community. But international laws and instruments prohibiting discrimination generally have been interpreted recently to apply to people with disabilities. Before examining selected international instruments which prohibit discrimination against people with disabilities, we must first examine the general body of relevant international human rights laws.

There are two primary sources of binding international human rights laws: international conventions or treaties, and customary international law. International conventions or treaties are considered "hard law." The UN Charter is perhaps the most important treaty since it establishes the framework for the United Nations and requires member States to promote universal respect for human rights.^⁵⁰ Other examples of such "hard law" include the two core United Nations human rights conventions, the International Covenant of Civil and Political Rights (ICCPR)^⁵¹ and the International Convention on the Economic, Social and Cultural Rights (ICESCR). ^⁵² Together with the Universal Declaration on Human Rights,^⁵³ these Covenants ^⁵⁴ make up what is known as the "International Bill of Rights."^⁵⁵ Both the ICCPR and the ICESCR were drafted to protect people against discrimination on the basis of "race, colour, sex, language, religion, . . . or other status," but neither convention specifies that discrimination on the basis of disability is unlawful.^⁵⁶ This omission is somewhat ironic since these instruments were drafted largely in response to the atrocities of the Holocaust in which Jews as well as people with disabilities were singled out for extermination,^⁵⁷ giving doctors in concentration camps the kind of unfettered medical discretion that made it possible to subject people to horrific and deadly medical research studies.^⁵⁸ Indeed, it was many years before the international community recognized that people with disabilities also should be protected from discrimination in these covenants.

In recent years, a number of conventions have been adopted to address the rights of particular populations, including the Convention on the Rights of the Child,^⁵⁹ the Convention on the Elimination of All Forms of Discrimination Against Women,^⁶⁰ the Convention Concerning Discrimination in Respect of Employment and Occupation,^⁶¹ the Convention Against Torture and Other Cruel , Inhuman or Degrading Treatment or Punishment, ^⁶² the Convention Concerning Indigenous and Tribal Peoples in Independent Countries,^⁶³ as well as more general conventions such as the Convention relating to the Status of Refugees,^⁶⁴ and the Convention on the Prevention and Punishment of the Crime of Genocide.^⁶⁵

These human rights conventions create obligations on governments to promote or enforce individual rights. Yet such conventions will become sources of rights to individuals within a given country generally only if they are incorporated into a state's own domestic laws.^⁶⁶ Thus one of the primary ways in which governments may implement their obligations under international law is through the enactment of domestic legislation. However, conventions must be ratified by a given nation in order for that government to be bound under international law. ^⁶⁷ Despite the complexities of treaty ratification in various countries, according to one source there are now over 100 state parties to each of the ICCPR and ICESCR, the Genocide Convention, the Torture Convention and the Convention Relating to Refugees; more than 150 state parties to the Convention on the Elimination of All Forms of Discrimination against Women; and over 185 parties to the Convention on the Rights of the Child.^⁶⁸

One of the most important features of international human rights conventions is their use as human rights monitoring instruments. Most conventions have mandatory reporting requirements that require states to report on a regular basis about their compliance with their obligations under the convention. Non-governmental organizations can both critique government reports and issue reports of their own. The reporting and public education functions of international human rights conventions are especially important to particularly vulnerable populations, such as people with disabilities confined in institutions, since they are necessarily cut off from public view. ^⁶⁹

International human rights conventions also establish a legal basis for the international scrutiny of practices that would otherwise be considered matters of domestic social policy that are protected by principles of State sovereignty. By providing a legal basis for international scrutiny, international human rights laws may be used as tools, for example to ensure that conditions in closed institutions are documented, seen, assessed, and judged by the world community. Once a common practice of international human rights abuses against institutionalized people with disabilities is recognized as unlawful discrimination, the hope is that the government that allows such practices will be held accountable. ^⁷⁰

In addition to international conventions, regional treaties have been drafted and adopted to protect human rights. Examples of such regional conventions include the American Convention on Human Rights (1969),^⁷¹ the Inter-American Convention to Prevent and Punish Torture,^⁷² the Inter-American Convention on the Prevention, Punishment and Eradication of Violence against Women,^⁷³ the European Convention on Human Rights and Fundamental Freedoms (1950),^⁷⁴ the European Social Charter,^⁷⁵ the African Charter,^⁷⁶ and, more recently, the Charter of Fundamental Rights of the European Union.^⁷⁷

Individuals can bring complaints against governments in commissions or courts established under these regional conventions, which may then settle the disputes or issue binding decisions on the government parties. In fact, a body of case law on the rights of people with mental disabilities under the European Convention of Human Rights has developed.^⁷⁸ And the first case involving the rights of a person with a mental disability was recently decided under the American Convention on Human Rights.^⁷⁹ Cases decided under these regional conventions may be useful in the interpretation of similar protections in other conventions, but they remain binding only within the human rights system created by the respective convention.

In addition to international conventions and regional conventions, a body of international customary law has developed that also establishes additional human rights and protections. Certain customs and principles have become so widely accepted that they have become binding as customary international law. To establish an international custom, the party must show a widespread practice by states of confirming to the alleged rule, together with evidence that states have followed this practice because they believe that they are under an obligation to do so.^⁸⁰ As such, customary human rights law may be found binding on all states without regard for whether a particular state has consented.^⁸¹

Non-binding human rights resolutions that are widely accepted as binding can, over the years, come to be understood as customary international law. The Universal Declaration of Human Rights (UDHR) is an example of a non-binding General Assembly Resolution, that has become binding as customary law, since its enactment in 1948. The principle that "[a]ll human beings are born free and equal in dignity and rights" is enshrined in Article 1 of the Universal Declaration of Human Rights. Indeed, the Declaration establishes human rights law as "a common standard of achievement for all peoples and all nations."^⁸²

Despite what appears to be a proliferation of human rights conventions and documents, particularly since World War II, no binding United Nations convention has been adopted to specifically prohibit discrimination against people with disabilities. In fact, in 1987 a draft Convention on the Elimination of Discrimination Against Disabled Persons was rejected by the United Nations in 1987.^⁸³ Despite this disappointing development, there is new hope for a United Nations disability rights convention. On November 28, 2001, the Third Committee of the UN General Assembly adopted a resolution creating an Ad Hoc Committee "to consider proposals for a comprehensive and integral international convention to protect and promote the rights of persons with disabilities."^⁸⁴ The first Ad Hoc Committee meeting is scheduled to take place in August, 2002.

The process of drafting a new United Nations convention can be long and complicated, and it is not yet certain that the UN will adopt a draft convention and send it to countries for ratification. Until such time as a convention is adopted and enters into force through widespread ratification, the most important binding protections under international human rights law are created by the broad language of the mainstream human rights conventions, such as the ICCPR, the ICESCR, and the Convention on the Rights of the Child (CRC). The main tools for interpreting these conventions are the General Comments of treaty-based Committees established by these specific conventions to assist with their interpretation, as well as non-binding UN General Assembly resolutions on mental and physical disability rights.^⁸⁵ These instruments and their use are described further in part III below. In recent years, a growing body of international declarations, standards and interpretations on covenants has emerged to protect certain rights of individuals with disabilities, including the right to be free from discrimination generally, and the right to be free from institutionalization as a form of discrimination.

III. International Human Rights Laws' Protections for People with Disabilities

The UN General Assembly's Declaration on The Rights of Mentally Retarded Persons protects people with intellectual or developmental disabilities from discrimination as it recognizes that "to the maximum degree of feasibility, [they will be accorded] the same rights as other human beings" which can not be restricted without due process that "must contain proper legal standards against every form of abuse."^⁸⁶ Despite its outdated use of the term mental retardation, as opposed to the more appropriate and current term, intellectual or developmental disability, this Declaration established the international community's first formal recognition of the rights of people with intellectual or developmental disabilities.

Further, in 1975, the UN General Assembly adopted the Declaration on the Rights of Disabled Persons. This Declaration seeks to extend the reach of the non-discrimination provisions of existing international conventions to people with disabilities. ^⁸⁷ For example, The Declaration on the Rights of Disabled Persons recognizes specifically the right of people with disabilities to equality, when it states that people with disabilities have "the inherent right to human dignity... and the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible.^⁸⁸

In the 1990's, as part of its commitment to the International Decade of Disabled Persons, the United Nations appointed two Special Rapporteurs to report on the abhorrent and inhumane conditions in which many people with disabilities have been forced to live throughout the world.^⁸⁹ According to the Despouy Report, published in 1991, the human rights of persons with disabilities are grossly violated throughout the world.^⁹⁰ Institutionalization of persons with disabilities, institutional abuse (including the misuse of drugs), and forced sterilization were among a litany of the practices that Despouy identified as serious violations of international law and human rights.^⁹¹ Despouy reported that no "cultural factor could justify or excuse such acts, which [many] regard as being contrary to binding Human Rights standards, prohibiting torture and other cruel, inhuman and degrading treatment or punishment."^⁹² In addition, Special Rapporteur Daes specifically reported on the inhumane conditions of people with mental disabilities.^⁹³ According to her report, psychiatric patients are held against their will and used "as guinea pigs for new scientific experiments."^⁹⁴

The United Nations has continued to direct international attention to the plight of people with disabilities.^⁹⁵ In 1991, the United Nations General Assembly adopted the Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care, (the MI Principles).^⁹⁶ Although the MI Principles are a non-binding resolution of the United Nations General Assembly, they can be and have been used as a guide to the interpretation of related provisions of international human rights conventions.^⁹⁷ These MI Principles have been recognized as "the most complete standards for the protection of the rights of person with mental disabilities at the international level."^⁹⁸ They "represent the minimum United Nations standards for the protection of fundamental freedoms and human and legal rights of persons with mental illness."^⁹⁹

In particular, the MI Principles provide the minimum standard of practice for the delivery of mental health services, including standards for treatment and living conditions within psychiatric institutions, and protections against arbitrary detention in such facilities.^¹⁰⁰ The MI Principles apply broadly to persons with mental illness, whether or not they are in psychiatric facilities; and they apply to all persons admitted to a mental health facility, whether or not they are diagnosed as mentally ill.

The United Nations took another significant step in 1993 when the World Conference on Human Rights met in Vienna, and reiterated that people with mental and physical disabilities are protected by international human rights law and that governments must establish domestic legislation to realize these rights. In what has come to be known as the "Vienna Declaration," the World Conference declared that "all human rights and fundamental freedoms are universal and thus unreservedly include persons with disabilities."^¹⁰¹ Pursuant to the recommendations of the 1993 World Conference on Human Rights, the United Nations General Assembly adopted a resolution the same year entitled the "Standard Rules on Equalization of Opportunities for Persons with Disabilities" ("Standard Rules").^¹⁰²

The Standard Rules do not have the binding effect of a Convention, but they were adopted to ensure "positive and full inclusion of person with disabilities in all aspects of society."^¹⁰³ To achieve this, the Standard Rules establish citizen participation by people with disabilities as an internationally recognized human right. To realize this right, governments "are under an obligation" to provide opportunities for people with disabilities, and organizations made up of people with disabilities, to be involved in drafting new legislation on matters that affect them.^¹⁰⁴ Further, the Standard Rules call on every country to engage in a national planning process to bring legislation, policies, and programs into conformity with international human rights standards.^¹⁰⁵ This process has been hailed as a call to states to "create a legal basis for measures to achieve full participation and equality for persons with disabilities."^¹⁰⁶ Accordingly, on December 3, 1996, the International Day of Disabled Persons, U.N. Secretary-General Boutros Boutros-Ghali proclaimed that persons with disabilities should enjoy their civil, political, social and cultural rights on an equal basis with other people.^¹⁰⁷

While the MI Principles and the Standard Rules provide detailed guidance to legislators as to the requirements of international human rights law, the fundamental obligations of governments remain dictated by the international human rights conventions. Human rights conventions require governments to report regularly on the legislation they adopt and the policies they establish to implement the provisions of conventions. Until recently, few governments have reported on the steps taken to ensure realization of the rights of people with mental or physical disabilities.

Yet one of the most important sources of interpretation of human rights conventions are the guidelines, known as General Comments, produced by human rights oversight bodies (also referred to as treaty-based committees) to guide governments in the preparation of their official reports. General Comments are non-binding, but they represent the official interpretation of the convention. Although these human rights oversight bodies have adopted very few General Comments on the rights of people with mental disabilities, the Comments that have been adopted are significant in their scope and language.

The most significant Comment to date on the rights of people with disabilities was adopted in 1994 by the Committee on Economic, Social, and Cultural Rights. General Comment 5,^¹⁰⁸ as it is known, details the application of the International Covenant on Economic, Social, and Cultural Rights with regard to people with mental and physical disabilities.^¹⁰⁹ As part of General Comment 5, the Committee recognized the MI Principles, the Standard Rules, and the UN's Guidelines for National Coordinating Committees as instruments established by the international community for "ensuring the full range of human rights for persons with disabilities."^¹¹⁰ General Comment 5 singles out the Standard Rules as "a particularly valuable reference guide in identifying more precisely the relevant obligations of States parties under the Covenant."^¹¹¹

In 2000, the Committee on Economic, Social, and Cultural Rights elaborated further on the right of all people to the highest attainable standard of health.^¹¹² And, in General Comment 14, the Committee specified the general and specific legal obligations of States in implementing Article 12 of the ICESCR.

The Committee on the Elimination of All Forms of Discrimination Against Women has also issued General Comments, including a recommendation pertaining to the rights of women with disabilities, in particular.^¹¹³ This recommendation calls on governments to improve their reporting on the enforcement of the rights of women with disabilities under the Convention on the Elimination of All Forms of Discrimination Against Women.^¹¹⁴

The UN Human Rights Committee, established to monitor the International Covenant on Civil and Political Rights (the ICCPR) has yet to issue a General Comment specifically on the rights to people with mental disabilities. However, its General Comment 18 reiterates the broadness of the ICCPR's prohibition of discrimination.^¹¹⁵

Further, as part of the World Program of Action Concerning Disabled Persons in the 1980's, the UN General Assembly called on all "State parties to the International Covenants on Human Rights [to] pay due attention, in their reports, to the application of the Covenants to the situation of disabled persons."^¹¹⁶ Then, finally, in April 2000, the United Nations Human Rights Commission adopted Resolution 2000/51 which "urges governments to cover fully the question of the human rights of persons with disabilities in complying with reporting obligations under the relevant United Nations instruments."^¹¹⁷

Resolution 2000/51 refers to the Standard Rules as a guide to the interpretation of anti-discrimination provisions in international human rights conventions. As the Resolution states, "any violation of the fundamental principle of equality or any discrimination or other negative differential treatment of persons with disabilities inconsistent with the Standard Rules on the Equalization of Opportunities for Persons with Disabilities is an infringement of the human rights of persons with disabilities."^¹¹⁸ In addition, the Commission called on all human rights treaty monitoring bodies to monitor the compliance of State Parties with regard to the rights of people with disabilities.^¹¹⁹ The Commission also called on non-governmental organizations (NGOs) to report violations to the Committee on Economic, Social, and Cultural Rights and to the Office of the High Commissioner on Human Rights.^¹²⁰ Finally, the Commission wrote that it "[i]nvites the United Nations High Commissioner for Human Rights, in cooperation with the Special Rapporteur on Disability of the Commission for Social Development, to examine measures to strengthen the protection and monitoring of the human rights of persons with disabilities and to solicit input and proposals from interested parties," including a panel of experts to be convened by the Special Rapporteur.^¹²¹ Although the UN High Commissioner and the Special Rapporteur do not have the authority to establish binding interpretations of the human rights conventions, they can, in consultation with a panel of experts, issue reports that propose new interpretations of conventions to be adopted by treaty monitoring bodies.

It is important to note that the United Nations Committee on Economic, Social and Cultural Rights has made clear that the protection against discrimination on the basis of "other status" under Article 2(2) of the ICESCR "clearly applies to discrimination on the grounds of disability."^¹²² Further, in the context of health care, the Committee on Economic, Social and Cultural Rights has emphasized a positive right to gain access services.^¹²³

Some conventions, such as the European Convention, also protect only against discrimination in the exercise of rights guaranteed under the convention itself.^¹²⁴ Article 26 of the ICCPR, for example, protects against discrimination in any area of law.^¹²⁵ The UN Human Rights Committee, established by the ICCPR to assist in the interpretation of the convention, defines discrimination as "any distinction, exclusion, restriction or preference . . . which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights and freedoms."^¹²⁶ The Committee on Economic, Social and Cultural Rights also recognizes that "[i]n order to remedy past and present discrimination, and to deter future discrimination, comprehensive anti-discrimination legislation in relation to disability would seem to be indispensable in virtually all States parties."^¹²⁷ Thus, protections against discrimination under international law extend beyond outlawing laws that explicitly or purposefully exclude or deny opportunities to people with disabilities. Legislation that has the effect of denying rights and freedoms is prohibited as discrimination, as well.^¹²⁸ As the UN Committee on Economic, Social, and Cultural Rights has observed, the problem of discrimination goes well beyond that.

Both de jure and de facto discrimination against persons with disabilities have a long history and take various forms. They range from invidious discrimination, such as the denial of educational opportunities, to more "subtle" forms of discrimination, such as segregation and isolation achieved through the imposition of physical and social barriers. . . . The effects of disability-based discrimination have been particularly severe in the fields of education, employment, housing, transport, cultural life, and access to public places and services.^¹²⁹

The United Nations General Assembly has taken such statements under consideration through the work of the Ad Hoc committee that is currently considering proposals for a Convention on the Rights of People with Disabilities.^¹³⁰ Thus, even if a Convention on the Rights of People with Disabilities is not adopted in the near future, the recent adoption of Resolution 2000/51 by the United Nations Commission on Human Rights, together with Committee comments, such as General Comment 5 of ICESCR, the Standard Rules, and the MI Principles, may provide the basis for protections against discrimination for people with disabilities under international law.

A. The Right to Community Integration Under International

Human Rights Law

In addition to the general anti-discrimination provisions of international law that may be applied to people with disabilities, failing to provide opportunities for people with disabilities to live in the community, rather than in institutions, may violate a broad array of recognized human rights. Drawing on the reasoning used by a majority of the United States Supreme Court in Olmstead, governments that provide services to people with disabilities exclusively in institutions, without providing meaningful alternatives in the community, may be found to violate international human rights law by providing services in a discriminatory manner.

Of course, in many countries, the absence of community alternatives to institutions leads to unnecessary and exclusive reliance on institutions to provide care and treatment to people with all sorts of different disabilities. Admission to such institutions is often necessitated on the absence of alternatives, rather than based on the appropriateness of treatment of a specific clinical diagnosis in a specific institution. And once inside the institution, the same lack of community alternatives results in continued incarceration, often long after the condition of the person with a disability has stabilized sufficiently to enable the person to return to the community, with appropriate supports and services if necessary. ^¹³¹

While it is true that the right to community integration as a human right, grounded in the principles of non-discrimination, has yet to be recognized explicitly under general international human rights covenants, the right to community integration has gained some recognition over the past 20 years in various human rights documents. References to community integration are found in Article 23 of the Convention on the Rights of the Child,^¹³² and in instruments and documents of the UN General Assembly such as the Declaration on the Rights of Mentally Retarded Persons,^¹³³ the 1991 Principles for the Protection of Persons with Mental Illness,^¹³⁴ the 1993 Standard Rules on Equalization of Opportunities for Persons with Disabilities,^¹³⁵ and General Comment 5 to the International Convention on Economic, Social and Cultural Rights,^¹³⁶ as well as in the Charter of Fundamental Rights of the European Union.^¹³⁷ Further, and perhaps most significantly, on December 19, 2001, the United Nations General Assembly adopted a resolution calling for the creation of an Ad Hoc Committee "to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities."^¹³⁸. This recent action by the UN Assembly is certainly the clearest indication of the "increas[ed] interest of the international community in the promotion and protection of the rights and dignity of persons with disabilities."^¹³⁹

For children with disabilities, support for the right to community integration is found under Article 23 of the Convention on the Rights of the Child (CRC). Generally the CRC provides important, detailed protections for children with mental and physical disabilities, including the right to education, services and support in the community. It also provides a model of the kind of rights an international disability rights convention could provide – or the kind of rights that could be guaranteed under existing international conventions if they were supplemented with detailed General Comments.

<SPACER SIZE="36" TYPE="HORIZONTAL">Article 23(2) of the CRC also seeks to ensure that every child with a disability has "effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities...." The same article requires services mandated under the convention to be provided to disabled children "in a manner conducive to the child's achieving the fullest possible social integration and individual development." Throughout the CRC, there are detailed provisions for the protection of the family, and recognition that the family is the "natural environment for the growth and well-being of all its members and . . . should be afforded the necessary protection and assistance so that it can fully assume its responsibilities within the community."^¹⁴⁰

Arguably, the requirement for the "fullest possible social integration" for the vast majority of children with disabilities, combined with protection of the right of children to a family, means that services themselves must be provided in a family-like environment in the community and not in orphanages or institutions. The CRC unfortunately does not state the logical outcome of the protections it provides, which would require a fundamental alteration of many countries' social care systems, but the Convention does provide sufficient detail to assess human rights protections within social service systems as a whole. In addition, it provides guidance to policy-makers, human rights activists, and international development agencies about the need to emphasize community-based alternatives in any structured response to the human rights problem in institutions.

In addition to the CRC, the Declaration on the Rights of Mentally Retarded Persons recognizes a right to community integration and inclusion by establishing that "[w]henever possible, the mentally retarded person should live with his own family or with foster parents and participate in different forms of community life."^¹⁴¹ However, the MR Declaration contemplates the restriction or denial of the right to be free from institutionalization if it should "become necessary," a vague standard that could easily be clarified in domestic legislation. Yet this standard may evolve into a mandate for community integration as more and more countries develop community-based services and support systems that permit the full social inclusion of people with even the most severe intellectual disabilities. In societies where most or all people with intellectual disabilities live in the community, it should rarely, if ever, be necessary to place a person in an institution.

Similarly, the 1975 Declaration on the Rights of Disabled Persons recognizes a right to community integration when it states that disabled persons "have the right to live with their families or with foster parents and to participate in all social, creative or recreational activities." ^¹⁴² The Declaration goes on to state that even if some sort of residential support is required, "the environment and living conditions therein shall be as close as possible to those of the normal life of a person of his or her age."^¹⁴³ The UN Declaration on the Rights of Disabled Persons also recognizes the importance of social integration when it states that "[d]isabled persons are entitled to the measures designed to enable them to become as self-reliant as possible."^¹⁴⁴

A third declaration, the Vienna Declaration, endorses not only the right of people with disabilities to community integration but also their right to equality. As the Vienna Declaration provides:

The World Conference on Human Rights reaffirms that all human rights and fundamental freedoms are universal and thus unreservedly include persons with disabilities. Every person is born equal and has the same right to life and welfare, education and work, living independently and active participation in all aspects of society. . . . The World Conference on Human Rights calls on Governments, where necessary, to adopt or adjust legislation to ensure access to these [life, welfare, education, work, living independently and active participation in all aspects of society] and other rights for disabled persons.

. . . Persons with disabilities should be guaranteed equal opportunity through the elimination of all socially determined barriers, be they physical, financial, social or psychological, which exclude or restrict full participation in society.^¹⁴⁵

The right to community integration is also addressed specifically in the 1991 Principles for the Protection of Persons with Mental Illness.^¹⁴⁶ These Principles recognize explicitly the right of every person with a mental illness "to live and work, as far as possible, in the community" ^¹⁴⁷ and, if treatment is necessary, "the right to be treated and cared for, as far as possible, in the community in which he or she lives.^¹⁴⁸ This preference for community living is reinforced by the duty to treat persons with mental illness in the least restrictive setting in their own community and to preserve and enhance their autonomy^¹⁴⁹

The MI Principles explicitly prohibit discrimination on the grounds of mental illness by defining discrimination as "any distinction, exclusion or preference that has the effect of nullifying or impairing equal enjoyment of rights."^¹⁵⁰ These principles, therefore, may support the claim that an individual who is institutionalized has been discriminated against because he or she has been deprived of the right to live and work in the community, and to be "treated with humanity and respect for the inherent dignity of the human person."^¹⁵¹

Further, the MI Principles are of particular importance because in many countries, long-term mental health facilities often serve as repositories for people who have no history of mental illness, or no current mental illness, but who remain in the institutions due to the lack of alternative facilities or services in their communities. Thus the MI Principles may have major implications for the future design of mental health systems. Indeed, they already have been used by international oversight and enforcement bodies as an authoritative interpretation of the requirements of the ICESCR.^¹⁵² No doubt, the MI Principles are one of the international community's strongest statements promoting community integration and prohibiting institutionalization as a form of discrimination against people with disabilities.^¹⁵³

In addition to the MI Principles and the Declarations discussed above, the 1993 Standard Rules on Equalization of Opportunities for Persons with Disabilities also recognize the right to community integration. As the Preamble to the Standard Rules states, "intensified efforts are needed to achieve the full and equal enjoyment of human rights and participation in society by persons with disabilities."^¹⁵⁴ The Standard Rules apply to all people with mental or physical disabilities, and establishes the right to community-based services to make such integration possible. Significantly, the Standard Rules also recognize the right of people with disabilities to participate in all decision-making relating to plans and programs that concern them, instead of having others speak on their behalf, and calls specifically for the inclusion of people with disabilities in the public process of drafting legislation that affects their rights and social and economic status.^¹⁵⁵

Another more recent example of an international instrument recognizing a right to community integration is the Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities, adopted by the Organization of American States (OAS).^¹⁵⁶ This Convention contains many important provisions, including the explicit recognition of a right to community integration. However, unlike other general human rights conventions, the OAS Convention does not create an immediate obligation on states to enforce the rights it establishes.

Concern over the segregation of persons with mental disabilities was officially expressed in the Americas over a decade ago. At a 1990 Regional Conference held in Caracas, Venezuela, the Pan American Health Organization adopted the Declaration of Caracas, which calls for a major restructuring of mental health services, including banning the exclusive reliance on inpatient treatment in a psychiatric hospital which "isolates patients from their natural environment. . ." ^¹⁵⁷ The Declaration also establishes a link between mental health services and the right to community integration by concluding that such outmoded mental health services "imperil the human and civil rights of patients." ^¹⁵⁸

The Council of Europe renewed its commitment to the right of people with disabilities to live in the community in 1992 when it recommended that states should "guarantee the right of people with disabilities to an independent life and full integration into society, and recognize society's duty to make this possible."^¹⁵⁹ The recommendation also states that services should be provided to people with disabilities to enable persons to "be as free as possible from institutional settings and constraints" except where "unavoidable," and calls on countries to adopt policies "guaranteeing full and active participation in community life."^¹⁶⁰ This 1992 policy reaffirmed the Council of Europe's original 1973 Resolution on the Social Services for Physically or Mentally Handicapped Persons, which states that "the general objective of this policy should be to give handicapped persons every opportunity to be as much integrated as possible into society. Whatever the cause, type and degree of their handicap may be, the handicapped should be given all opportunities for their personal development and for maximum participation in the activities of the community." ^¹⁶¹

Similarly, General Comment 5 to the ICESCR recognizes the right to community integration, including the right to receive medical and social services that will enable people to participate fully in the community, as an integral part of the ICESCR's protection against discrimination for people with disabilities. While there is no such specific language about community living in the General Comments of the ICCPR, the identification of segregated services as a form of discrimination under the ICESCR may indicate that the ICCPR provides similar protections.^¹⁶²

Further, General Comment 5 makes clear that such rights are core principles under the ICESCR. For example, Comment 5 interprets the right to health as part of the general requirement to promote individual independence and social integration. As General Comment 5 states, "[t]he right to physical and mental health ... implies the right to have access to, and to benefit from, those medical and social services...which enable persons with disabilities to become independent, prevent further disabilities and support their social integration."^¹⁶³ Thus, in providing for rehabilitation, General Comment 5 quotes the Standard Rules to state that rehabilitation services should be designed to enable individuals "to reach and sustain their optimum level of independence and functioning."^¹⁶⁴

General Comment 14 also recognizes that States can address in their planning and budget development processes the need for a range of community services needed to serve people with mental disabilities. "Such steps must be deliberate, concrete and targeted towards the full realization of the right to health."^¹⁶⁵

These General Comments to the ICESCR, together with the other international laws and statements discussed above, provide standards against which the treatment of people with mental disabilities may be judged. But they do more as well. They establish a right to community integration for people with disabilities and support the claim that the institutional placement itself, as well as the continued confinement of people in institutions who are capable of living in the community, is prohibited by the anti-discrimination provisions of existing human rights laws and interpretations.

International Human Rights Protections For People with Disabilities in Institutions

In addition to the right of people with disabilities to live in the community under international law, international law and policies may also recognize the right to be free from improper institutionalization as unlawful discrimination.

In many countries in the world today, the absence of adequate community programs and services for people with disabilities, and people with mental illness in particular, leads to unnecessary reliance on institutions to provide treatment. Within these institutions, individuals may then be subject to abuse and neglect. A worldwide effort to document such pattern of abuses in institutions is underway. For example, Mental Disability Rights International (MDRI), an advocacy organization dedicated to using international human rights law to protect the rights of people with mental disabilities, has begun to investigate human rights violations against people with disabilities in sixteen countries, primarily in Latin America and Central and Eastern Europe.^¹⁶⁶ Over the last eight years, MDRI has published four major reports documenting widespread abuses in four countries.^¹⁶⁷

MDRI's findings in the countries in which they have investigated are remarkably similar. ^¹⁶⁸ People with mental and physical disabilities are commonly detained in closed, segregated institutions – out of public view and often in parts of a country that are remote from population centers. People may remain in these custodial facilities for life, living cut off from family, friends and community. In some cases, they are detained without any legal process to protect them against arbitrary detention. Even when legal procedures for civil commitment exist, these are often circumvented or ignored. For example, people with mental disabilities are often placed under the "guardianship" of a mental health administrator, and then "voluntarily" committed to an institution. Many people are declared mentally incompetent without legal representation or due process protections, and their placement under guardianship functionally strips them of any legal right to make the most basic decisions about their own lives.

In many of the countries MDRI has visited, authorities report that the majority of people who are currently institutionalized could live in the community if appropriate services were available. A small percentage of institutionalized populations are made up of individuals who present a danger to themselves or others, or who are in need of treatment that must be provided in an institution. Many people without disabilities are placed in institutions simply because they are marginalized in society and have no community support network, but they become increasingly socially isolated and acquire mental disabilities because of living in an institution. This is particularly true for the large numbers of children placed in orphanages or residential schools. ^¹⁶⁹

<SPACER SIZE="36" TYPE="HORIZONTAL">Behind the closed doors of institutions, people with disabilities are subject to inhuman and degrading treatment. In Mexico, Hungary, Armenia, and Kosovo, for example, MDRI found people detained in squalid conditions – in some cases left naked and covered in their own feces^¹⁷⁰ People are routinely strapped to benches, beds or wheelchairs – largely due to the lack of staff to provide basic care or nominal supervision. In Uruguay, MDRI found electro-convulsive therapy (ECT) used on people with mental retardation as a form of behavior control. ^¹⁷¹ In Uruguay, Hungary and Romania, overdose, poly-pharmacy and the failure to monitor the side effects of medications expose hundreds of people to unnecessary and life-threatening dangers. ^¹⁷² Children with disabilities are often denied medical care and are left to die in their institutions. Both children and adults with multiple disabilities are often relegated to the back wards of institutions, where they are "triaged" and left with the least care and attention. The entire population of some institutions is literally left to starve or freeze to death, with only the strongest individuals capable of surviving. In Armenia, for example, MDRI visited an institution that reported an annual mortality rate of 30%. MDRI has received reports – which they have not yet been able to document – of institutions with annual mortality rates upward of eighty percent.^¹⁷³

<SPACER SIZE="36" TYPE="HORIZONTAL">Women are particularly vulnerable to abuse in mental health systems. Women subjected to trauma – such as childhood sexual abuse, domestic violence or war-related traumas – are commonly misdiagnosed with major mental health disorders. They are often improperly institutionalized and then re-traumatized by the coercive treatment they receive in institutions. Women in institutions are particularly vulnerable to further abuse by staff or other patients. Non-consensual sterilization, forced abortions, and the arbitrary denial of parental rights are unfortunately all too common.

<SPACER SIZE="72" TYPE="HORIZONTAL">International covenants may provide important protections for institutionalized people with disabilities, including the subjects of MDRI's Reports. The arbitrary detention of individuals in institutions, as described above, violates their right to "liberty and security of the person" under Article 9 of the ICCPR. Similarly, "inhuman and degrading treatment" (inside state-run institutions) is prohibited by Article 7 of the ICCPR.^¹⁷⁴ Subjecting individuals, including individuals with disabilities, to high risks of medical illness or death also violates their right to life under Article 6 of the ICCPR. As such, institutionalization may violate the right to the highest attainable standard of physical and mental health, as recognized by Article 12 of the ICESCR. Even clean, safe, well-administered institutions may result in the deterioration of psychological and social functioning as individuals lose their social ties with the community and adapt to the dependency of life in a closed environment.

The international standard that is most relevant to conditions in institutions, particularly for people with mental illness, is the MI Principles. The MI Principles include a broad array of rights within institutions, and a set of substantive standards and procedural protections for involuntary hospital admission, such as protections against "harm, including unjustified medication, abuse by other patients, staff or others."^¹⁷⁵ These Principles require the establishment of monitoring and inspection of facilities to ensure compliance with the MI Principles.^¹⁷⁶ They also require treatment that is "based on an individually prescribed plan"^¹⁷⁷ and "directed towards preserving and enhancing personal autonomy."^¹⁷⁸ The MI Principles also provide to individuals detained in psychiatric institutions the right to a hearing before a judicial or other independent review body, the right to representation and independent experts, the right to attend one's own hearing, and the right to be given the reasons for any decision^¹⁷⁹ The Principles state that a person may be involuntarily admitted only if the person has a mental illness diagnosed under accepted medical standards, and presents either a serious likelihood of immediate harm to him or herself or others, or that the person is severely mentally ill and his or her condition will substantially deteriorate, resulting in impaired judgment^¹⁸⁰ However, the Principles do not prohibit all involuntary institutionalization, which, in itself is a controversial human rights issue.

While these general arguments about the application of international human rights law are intuitively powerful, human rights covenants have not been used historically to protect against human rights abuses in psychiatric institutions. The major limitation on the use of existing covenants to enforce the rights of institutionalized people with disabilities is their failure to include specific provisions regarding people with disabilities.

Perhaps the most highly developed jurisprudence on the rights of people in institutions is in the European system of human rights. However, the case law in this area is mixed. In fact, t<SPACER SIZE="36" TYPE="HORIZONTAL">he jurisprudence in the European human rights system reveals the difficulties of applying general human rights conventions in the context of institutional care, particularly in areas that have traditionally been left to medical discretion or domestic social policy.

The European and American conventions on human rights provide approximately parallel protections. Regional human rights systems in Europe and the Americas have the most effective enforcement mechanisms, and present the greatest opportunities for individual and systemic rights enforcement. The European and American courts of human rights can hear cases on the application of human rights to individual circumstances, presenting not only an opportunity for individual enforcement but also for the authoritative interpretation of international human rights protections under general conventions.

But while the European Court has been open to the possibility of finding inhuman and degrading treatment in institutions, there is also a long line of cases in which the Court has found that the amount of suffering caused by poor conditions did not meet the standard required by the Convention.^¹⁸¹

1. The European System

<SPACER SIZE="36" TYPE="HORIZONTAL">The European Commission of Human Rights and the European Court of Human Rights have heard numerous cases on the rights of institutionalized people.^¹⁸² In fact, the European Court has contributed greatly to the interpretation of Article 5 of the European Convention on Human Rights and Fundamental Freedoms (ECHR) protecting the right to liberty and security of the person. Further, the Court has required state parties to the ECHR to follow procedures set forth in their own domestic laws, and to provide individuals with a right to review by a court or other independent authority.

While the European Court has stated that special scrutiny is required to protect especially vulnerable people in institutions,^¹⁸³ both the European Court and the European Commission have, in practice, been extremely deferential to institutions when reviewing allegations of inhuman and degrading treatment under Article 3 of the ECHR.^¹⁸⁴ For example, in the case of B. v. United Kingdom the European Commission found a case inadmissible under Article 3 because the facts alleged did not amount to inhuman and degrading treatment.^¹⁸⁵ In the case, the applicant, a patient at a psychiatric hospital in the United Kingdom, claimed that he was "detained in grossly overcrowded conditions, lacking in adequate sanitary (e.g. toilet and washing) facilities, and in a constant atmosphere of violence. He alleged that dormitory beds were only 6-12 inches apart, and there was no privacy, and little fresh air or exercise. The applicant claimed he had received no treatment whatsoever and almost never saw a doctor."^¹⁸⁶ The European Commission held that although the physical conditions at the hospital were "admittedly unsatisfactory and have been criticized by different official bodies over a number of years... [and while] the hospital staff may . . . do their best to cope with these inadequacies, this does not itself exclude the possibility that the physical conditions of detention could in themselves give rise to a question under Art. 3 which requires investigation and examination on the merits."^¹⁸⁷

In the case of B. v. United Kingdom, the Commission determined that despite the enormity of the suffering induced by the poor conditions, it did not rise to the level of a violation of the ECHR. Other cases have alleged similar inhuman and degrading treatment in psychiatric institutions in Europe, including the detention of individuals in prolonged physical restraints.^¹⁸⁸ But the European Commission and Court of Human Rights have consistently found that such practices are not sufficiently extreme to constitute a human rights violation.^¹⁸⁹

<SPACER SIZE="36" TYPE="HORIZONTAL">It is significant, however, that the European Commission in B. v. United Kingdom recognized that conditions in institutions may violate the rights protected under the ECHR even if staff "do their best" to assist patients. In many circumstances, people with mental disabilities are not abused through the intentional infliction of pain and suffering, but because they receive inappropriate care due to a lack of resources or the administrative convenience of the institution. Unlike "torture," which is usually understood to be limited to cases where pain is inflicted on purpose,^¹⁹⁰ "inhuman and degrading treatment" has no intent requirement.^¹⁹¹

With the more recent case of Herzcegfalvy v. Austria, the European Court showed that it was becoming more aware of the particular vulnerability of psychiatric patients, and perhaps increasingly willing to find the presence of human rights abuse in institutions.^¹⁹² Most recently, in July 2001, the European Court of Human Rights decided the case of Price v. United Kingdom,^¹⁹³ which establishes new rights for individuals with disabilities, particularly those detained in institutions. In the Price decision, the European Court found that a woman detained in jail for seven days had been subject to degrading treatment after she was forced to sleep in a wheelchair and left without an accessible bathroom. The Price decision suggests that international tribunals, such as the European Court, will now recognize that extra vigilance is required to ensure that governments protect against inhuman and degrading treatment of people with mental disabilities, particularly those detained in institutions.^¹⁹⁴

2. The Inter - American System

<SPACER SIZE="36" TYPE="HORIZONTAL">Jurisprudence in the Inter-American system of human rights has also begun to become more active recently with respect to the rights of people with disabilities detained in institutions. In March 1999, the Inter-American Commission of Human Rights issued its first decision on the rights of an individual with a mental disability. ^¹⁹⁵ The Case of Victor Rosario Congo involved Mr. Congo, a man with a mental disability from Ecuador, who died of "dehydration" in pre-trial detention after he was beaten by a guard, placed in isolation, and denied adequate medical and psychiatric care. ^¹⁹⁶ The Commission found that Mr. Congo's mental state degenerated as a result of being held in isolation, and that holding him in seclusion under these circumstances constituted inhuman and degrading treatment in violation of Article 5 of the American Convention.^¹⁹⁷ The Commission did not find that Congo was deliberately deprived of food and water, but that state authorities failed to take appropriate measures, given his mental health condition, to ensure that he received adequate food and water and was protected. The Commission found that Ecuador's failure to provide appropriate care for Mr. Congo violated its duty to protect his life under Article 4(1) of the American Convention.^¹⁹⁸

In reaching its decision, the Commission applied special standards to the determination of whether the provisions of the American Convention on Human Rights "ha[d] been complied with in cases involving persons suffering from mental illnesses."^¹⁹⁹ The Commission stated that protection against inhuman and degrading treatment under the American Convention "must be interpreted in light of the Principles for the Protection of Persons with mental Illness and for the Improvement of mental Health Care."^²⁰⁰ Although the Commission observed that detention of a person in a small, isolated cell "can in itself constitute inhumane treatment. . . . when the person kept in isolation in a penitentiary institution has a mental disability, this could involve an even more serious violation of the State's obligation to protect the physical, mental and moral integrity of persons held under its custody."^²⁰¹ The Commission found, therefore, that placement in isolation itself constituted inhuman and degrading treatment and that "[t]his violation is aggravated by the fact that he was left in isolation unable to satisfy his basic needs."^²⁰² The Commission also noted that the European Commission had already established that detention "under deplorable conditions and without medical treatment" constituted an additional form of inhuman and degrading treatment.^²⁰³ As the Commission noted, "the right to physical integrity is even more serious in the case of a person held in preventative detention, suffering a mental disease, and therefore in the custody of the State in a particularly vulnerable position."^²⁰⁴

<SPACER SIZE="36" TYPE="HORIZONTAL">The Congo decision is important because the Inter-American Commission indicated, for the first time, that it will adopt "special standards to the determination of whether the provisions of the Convention have been complied with in cases involving persons suffering from mental illnesses"^²⁰⁵ In addition, the case also marks the first time the Inter-American Commission relied on the Principles for the Protection of Persons with Mental Illness (MI Principles) as a guide to the interpretation of the American Convention.

The recognition of the MI Principles as an authoritative guide to the interpretation of the American Convention is important within the Inter-American system and in the development of international human rights law as well. The Inter-American Commission's recognition that the MI Principles constitute state practice consequently raises their value as a matter of customary international law. In the future, therefore, human rights bodies may be more likely to follow the precedent established by the Inter-American Commission in using the MI Principles as a guide to the interpretation of the American and other conventions.

Since its decision in The Case of Victor Rosario Congo, the Inter-American Commission has been willing to hear additional cases involving the rights of people with mental disabilities detained in psychiatric institutions. For example, in March 2000, the Commission granted a request from Mental Disability Rights International for a hearing on the findings of MDRI's February 2000 report, entitled Human Rights & Mental Health: Mexico, which documents a broad pattern of abuses in Mexico's psychiatric facilities. This hearing was the Inter-American Commission's first hearing on the protection of human rights in a mental health system as a whole, and prompted the Commission to raise concerns about human rights abuses in Mexico's psychiatric hospitals in the OAS's annual report on Mexico's human rights record.^²⁰⁶ This hearing also demonstrates the value of regional human rights systems as tools for human rights monitoring and public education about the conditions of people with disabilities in closed institutions.

Thus, the situation with respect to the effect of international conventions on state practices may be changing. The Inter-American Commission on Human Rights' precedent- setting decision in The Case of Victor Rosario Congo builds on the approach adopted by the European Court in Herzcegfalvy v. Austria,^²⁰⁷ and recognizes that the MI Principles can be used as a guide to the interpretation of the American Convention on Human Rights in regard to the rights of people with mental disabilities.^²⁰⁸

Further, new interpretations of human rights conventions by international tribunals and bodies may create a window of opportunity for NGOs working for the rights of people with disabilities. By documenting abuses and submitting findings to international oversight bodies, activists, such as MDRI, can inform international bodies about the importance of increased monitoring and rights enforcement for people with disabilities. Activists can also provide the foundation of factual evidence necessary to demonstrate that, around the world today, the placement of people with disabilities in institutions inherently violates their rights, and subjects them to the increased risk of inhuman and degrading treatment, arbitrary detention, deprivation of the right to the highest attainable standards of physical and mental health, and a broad range of other rights violations. As such, NGOs now have an opportunity to help foster explicit recognition that the detention of people with disabilities in institutions and their segregation from society inherently constitutes discrimination under international law.

Conclusion

In Olmstead v. L.C.,the United States Supreme Court held that states may not detain individuals with disabilities in institutions if such individuals are capable of living in the community.^²⁰⁹ While the Olmstead decision includes significant limitations on the right of people with disabilities to live in the community and to receive any necessary medical treatment there, the Court establishes that improper institutionalization is discrimination under the anti-discrimination prohibition of Title II of the Americans with Disabilities Act. This decision, therefore, may provide guidance to international bodies interpreting international human rights covenants and declarations with similar anti-discrimination language. In international law, there is now a strikingly similar interpretation of the protection against discrimination. The Committee on Economic, Social and Cultural Rights' General Comment No. 5,^²¹⁰ which interprets the anti-discrimination provision of the ICESCR to provide a right to community integration, opens the door to a broad new protection of this right under international law. General Comment 5 has not, as of yet, been widely interpreted or applied. U.S. jurisprudence under Olmstead v. L.C. provides an example of how the right to community integration can be understood and developed in international law.

Thus an historic opportunity now exists for the broader application of the United States Supreme Court's community integration mandate, together with rights recognized in various international human rights conventions and interpretations. Although general international human rights documents may be applied to people with disabilities, the full promise of the Universal Declaration on Human Rights, that all people are equal in rights, has yet to be fulfilled. Specialized international conventions have been established to protect particular groups considered especially vulnerable, such as women, children, workers, and racial minorities.^²¹¹ But no such international convention yet exists to protect the rights of people with disabilities.^²¹² Perhaps the time has come.

On December 19, 2001 the United Nations General Assembly adopted a resolution calling for the creation of an Ad Hoc Committee "to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities."^²¹³ "Encouraged by the increasing interest of the international community in the promotion and protection of the rights and dignity of persons with disabilities," the United Nations General Assembly is now on record acknowledging "the disadvantaged and vulnerable situation faced by six hundred million persons with disabilities around the world."^²¹⁴ The adoption of a new specialized UN convention on the rights of people with disabilities could contribute significantly to the right of people with disabilities to equality and dignity, including those confined in institutions. As the drafters of new international law attempt to codify the minimum protections of existing international law in any new draft convention, they should be sure to include a recognition of the right to community integration as established in General Comment 5 and as developed in Olmstead.

It is not yet certain if the United Nations will adopt an international convention on the rights of people with disabilities. Even if such a convention is adopted by the United Nations, it would have to be ratified by governments throughout the world in order be legally binding. Such a process could take years to accomplish. In the meantime, governments remain obligated to abide by the requirements of existing international human rights conventions and customary international law. The adoption of domestic legislation that conforms to the requirements of international standards is one of the most important ways in which governments may meet their existing obligations to people with disabilities under international human rights law.^²¹⁵ Thus, until such time as a strong, enforceable, international human rights convention protecting the rights of people with disabilities is drafted, adopted and ratified, advocates worldwide will, and must, develop new strategies and theories, such as those proposed here, to make better use of existing international human rights conventions and interpretations to advance the rights of people with disabilities throughout the world.

1 Eric Rosenthal, Executive Director, Mental Disability Rights International (MDRI), <http://www.mdri.org/>, 1156 15^th St. N.W. Washington, D.C., U.S.A. 20005 and Arlene Kanter, Professor of Law and Director of Clinical Legal Education, Syracuse University College of Law, Syracuse, N.Y., U.S.A. 13244-1030. Please contact the authors at eric.rosenthal@erols.com and kantera@law.syr.edu, respectively . The authors wish to thank Professor Donna Arzt, Director of the Global Law and Practice Center of Syracuse University College of Law, for sharing her expertise and comments on a previous draft, and Mary Dispenza (SU COL '02) for her indispensable research assistance.

2 The term "people with mental disabilities" refers to people who have been diagnosed with developmental disabilities, intellectual disabilities, or mental illness, or who are perceived as having such mental disabilities. Although there is no internationally accepted definition of the term "disability," the Standard Rules of 1993 define "disability" as "summariz[ing] a great number of different functional limitations occurring in any population . . . . People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness. Such impairments, conditions or illnesses may be permanent or transitory in nature." Introduction, ¶ 17, of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, G.A. Res. 48/96, U.N. GAOR., 48^th Sess., Supp. No. 48, Annex at 202-11, U.N. Doc. A/Res/48/49 (1993) [hereinafter Standard Rules].

3 This chapter seeks to highlight the most relevant binding and non-binding international laws and documents relevant to establishing a claim for community integration and against unnecessary institutionalization as discrimination under international law; it does not and could not include all relevant international documents, reports or comments.

4 527 U.S. 581 (1999).

5 Id.

6 42 U.S.C. § 12101 et seq. (2001).

7 General Comment No. 5 (1994) on Persons with Disabilities, Report on the Tenth and Eleventh Sessions, U.N. ESCOR 1995, Supp. No. 2 [according to U.N. Doc. E/1995/22/Corr.1-E/C.12/1994/20/Corr.1], at 102, ¶ 15, U.N. Doc. E/1995/22-E/C.12/1994/20 (1995) [hereinafter General Comment 5].

8For a background on the development of General Comment 5, see Philip Alston, Disability and the International Covenant on Economic, Social and Cultural Rights, in Human Rights and Disabled Persons 94-105 (Theresia Degener & Yolan Koster–Dreese, eds., Dordrecht; Boston; London: Martinus Nijhoff Publishers, 1995) [hereinafter Degener & Koster-Dreese].

Olmstead and the Emerging Right to Community Integration

II. The Prohibition of Discrimination Under International Human Rights Laws

Conclusion