2.1 The Right to Live in the Community Prior to the Convention on the Rights of People with Disabilities

People with disabilities are the largest minority in the world, totalling today over 1 billion people, or 15 per cent of the world's population.Footnote ²⁰ Yet, when the United Nations was founded, and until recently, people with disabilities were not considered a distinct group worthy of human rights protection.Footnote ²¹ Instead, they were, and still are in many places, seen primarily as patients who need treatment or objects of charity, but not as human beings entitled to protection under international human rights law.

Prior to the CRPD, no binding international treaty existed to protect the rights of people with disabilities, generally, or their right to live in the community, in particular. However, in the years preceding the CRPD, a growing body of international interpretations and commentary, known as ‘soft’ laws, began to emerge to protect certain rights of individuals with disabilities, including the right to community living.Footnote ²²

The first such ‘soft law’ relating to the rights of people with disabilities is the Declaration on the Rights of Mentally Retarded Persons, adopted in 1971 by the United Nations General Assembly.Footnote ²³ The Declaration protects from discrimination people who were then referred to as ‘mentally retarded’.Footnote ²⁴ It established, for the first time, a formal recognition of the rights of people with mental disabilities, including a (limited) right to live in the community. As the Declaration states, ‘[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’.Footnote ²⁵ By including the opening words, ‘whenever possible’, the Declaration presents the possibility that, for some people some of the time, it will not be possible. Therefore, this Declaration cannot be read as conferring on people with disabilities an absolute right to live in the community.

Similarly, in 1975, the UN General Assembly adopted the Declaration on the Rights of Disabled Persons. This Declaration recognises ‘the inherent right to respect for their human dignity’ of all people with disabilities. It also recognises the ‘fundamental right’ of people with disabilities to ‘enjoy a decent life, as normal and full as possible’,Footnote ²⁶ which necessarily includes the right to live in the community as opposed to segregated settings or institutions. The 1975 Declaration on the Rights of Disabled Persons also asserts a specific right to live with one's own family. However, it also states that differential treatment with respect to housing for people with disabilities may be permitted if ‘required by his or her condition or by the improvement which he or she may derive therefrom’.Footnote ²⁷ The Declaration further states that ‘[if] the stay of a disabled person in a specialized establishment is indispensable, 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’.Footnote ²⁸ It not only says that people with disabilities have a right to live in settings that are not only as close as possible, but that, in fact, are like those of the normal life of a person of his or her age. Accordingly, the Declaration does not resolve the questions of who decides what constitutes indispensability and when such indispensability arises. In other words, the Declaration arguably created questions rather than resolved the issue of whether people with disabilities have the right to live in a home in the community, just like everyone else.

Following these declarations, the UN assigned two Disability Rapporteurs to investigate living conditions for people with disabilities.Footnote ²⁹ In 1983, Special Rapporteur, Erica-Irene A Daes, reported on the inhumane conditions in which people with disabilities were forced to live, particularly psychiatric patients who are held against their will and used ‘as guinea pigs for new scientific experiments’.Footnote ³⁰ Nearly a decade later, in 1991, Special Rapporteur, Leandro Despouy, reported that people with disabilities were subjected to gross violations of their human rights in the form of institutionalisation and abuse in institutions.Footnote ³¹ According to the Despouy Report, institutionalisation, institutional abuse (including the misuse of medication), and forced sterilisation of persons with disabilities were among a litany of practices identified as serious violations of international human rights law.Footnote ³²

In response to these reports, the United Nations directed international attention to the plight of people with disabilities, particularly those living in institutions rather than in the community.Footnote ³³ In 1991, for example, the UN General Assembly adopted the Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care, known as the ‘MI Principles’.Footnote ³⁴ Although the MI Principles are non-binding, they can be, and have been, used as a guide to interpret related provisions of international human rights conventions.Footnote ³⁵ In fact, the MI Principles have become known to ‘represent the minimum United Nations standards for the protection of fundamental freedoms and human and legal rights of persons with mental illness’.Footnote ³⁶ 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 protection against arbitrary detention in such facilities.Footnote ³⁷ The MI Principles also have been found to apply to persons with mental disabilities regardless of whether or not they are in psychiatric facilities, and to all persons admitted to mental health facilities regardless of whether or not they are diagnosed as mentally ill. In fact, prior to the CRPD, the MI Principles were recognised as ‘the most complete standards for the protection of the rights of persons with mental disabilities at the international level’.Footnote ³⁸

Although the MI Principles do not ban institutionalisation outright, Principle 3 of the MI Principles states that people with mental disabilities ‘shall have the right to live and work, to the extent possible, in the community’. Principle 7 also recognises that ‘[e]very patient shall have the right to be treated and cared for, as far as possible, in the community in which he or she lives’. Because the phrase ‘as far as possible’ is not defined, it obviously leaves open the possibility that at times such rights will be limited as being ‘not possible’.Footnote ³⁹

The UN took another step towards acknowledging the right of people with disabilities to live in the community when the World Conference on Human Rights met in Vienna in 1993.Footnote ⁴⁰ In what has become 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’.Footnote ⁴¹ Immediately following this conference, the UN General Assembly adopted a resolution entitled ‘the Standard Rules on the Equalization of Opportunities for Persons with Disabilities’ (‘Standard Rules’).Footnote ⁴² These Rules, which formed the primary text guiding international disability rights until the adoption of the CRPD, affirm the principle that people with disabilities ‘should be enabled to live with their families’.Footnote ⁴³

The Standard Rules, together with the MI Principles, provide detailed guidance to governments regarding the applicability of international human rights law to people with disabilities, generally, and regarding their right to live in the community, in particular. Few governments, however, took steps to ensure the enforcement of these rights prior to the CRPD.Footnote ⁴⁴ As a result, it was not until the formal adoption of the CPRD that people with disabilities were granted the full panoply of human rights protections under international law, including the ‘right to live in the community, with choices equal to others’.

2.2 The Adoption of the Convention on the Rights of People with Disabilities

The first proposal for a disability-specific convention was introduced at the United Nations by Italy in 1987, and again by Sweden in 1989.Footnote ⁴⁵ It was not until 28 November 2001 when the UN General Assembly adopted Mexico’s 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’.Footnote ⁴⁶

The idea of a disability-specific convention gained broad support during the five years (2001–06) during which the Ad Hoc Committee met at the UN.Footnote ⁴⁷ Never before in the history of the UN were the people affected by a treaty present in such great numbers and as actual participants in the drafting process.Footnote ⁴⁸ While the CRPD focuses on the rights and needs of people with disabilities, it also speaks about the need to change societies to enable every person to contribute to society to the best of his or her abilities and without discrimination.Footnote ⁴⁹ The CRPD was eventually adopted by consensus on 13 December 2006. When it opened for signature on 30 March 2007, 82 countries signed the Convention, and 44 countries signed the Optional Protocol,Footnote ⁵⁰ which amounted to more countries signing this treaty on opening day than any other treaty on any other opening day in the history of the UN.Footnote ⁵¹

The purpose of the CRPD is to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’.Footnote ⁵² As such, the CRPD reflects a major shift in global understanding and responses towards disability by adopting a human rights approach. By 1 May 2012, 153 countries had signed the CRPD, of which 112 had also ratified it.Footnote ⁵³

The human rights approach is distinguished from the medical model of disability which views a person with a disability as someone in need of treatment, a cure, or charity. The human rights model incorporates a social model of disability by focusing less on the functional impairments or diagnosis of the individual with a disability, and more on the limitations of a society that categorises who is normal and who is not.Footnote ⁵⁴ This human rights approach recognises the inherent equality of all people and not only accepts but also values people with disabilities for their differences and abilities. In order to accommodate human differences, it is the society, as opposed to the individual, that must change.Footnote ⁵⁵ By rejecting the view that disability is solely a medical problem, the human rights approach transforms the needs of people with disabilities into rights they can claim and for which they can advocate.Footnote ⁵⁶

One such right that is central to the human rights approach to disability is the right to be free from discrimination.Footnote ⁵⁷ Of course, discrimination can take many forms. For people with disabilities, discrimination can be overt and intentional. People with disabilities are all too often denied access to jobs, custody of their children, or access to education or services on that basis. But more often than not, discrimination against people with disabilities is less obvious, when it takes the form of fear, pity and patronisation. It is no less discrimination against a person with a disability when he or she is denied a job that an employer (incorrectly) thinks would be too difficult for that person as when an employer refuses to hire a person with a disability outright on that basis. It is also no less discrimination when the state condones inaccessible buildings and services. In such cases, simply banning discrimination on the grounds of disability is insufficient to achieve equality for people with disabilities. In order to fully protect people with disabilities from discrimination, affirmative steps are required. Changes in the physical environment, how services are delivered, how information is communicated, as well as changes in attitudes are necessary in order to protect the right of people with disabilities to be free from discrimination in all aspects of life. As such, the human rights approach to disability makes clear that people with disabilities are rights holders and entitled to the full range of civil and political, social, economic and cultural rights. Moreover, the limitations placed on people with disabilities by their social and physical environments are considered violations of their human rights.Footnote ⁵⁸

The CRPD is the first disability-specific international treaty and the first treaty to adopt the human rights approach to disability. Accordingly, it protects the right of people with disabilities to make their own decisions, including the right to decide where to live, what services to receive and where. The next section will address Article 19 of the CRPD, which includes a specific provision ‘recognizing the equal right of all persons with disabilities to live in the community with choices equal to others’.

2.3 Article 19 and the Right to Live in the Community

Prior to the final adoption of the CRPD, the UN Ad Hoc Committee considered two official drafts of the Convention. The first draft, known as the Working Group Draft, included a proposed Article 15 on the right of people with disabilities to live independently and to be included in the community. This draft article read:

This draft version of the article on community living appeared to protect the various rights relating to the right to live in the community – from the right to choose one's place of residence, to the prohibition on forcing a person to live in an institution or a particular living arrangement, to ensuring access to support services in the community. Noticeably absent from this list of rights, however, is the basic right of all persons with disabilities to live in the community.

The ‘right to live in the community’ is not the same as ‘the right to choose one's place of residence’. Indeed, the right to live in the community generally is a negative (civil and political) right since, as a matter of law, the government is charged with prohibiting discrimination in housing. But the right to live in the community is also a positive (social, economic and cultural) right since the right to live in housing in the community requires the government to act and expend funds to effectuate the right for individual people.

Many people with disabilities throughout the world are given no choice about where they will live and with whom or, more fundamentally, whether they have the basic right to decide to live in the community and receive services there, as opposed to in institutions. Accordingly, this early version of Article 15 which guaranteed that ‘persons with disabilities have the equal opportunity to choose their place of residence and living arrangements’ was considered by disability activists and advocates, in the first instance, to be insufficient to protect the fundamental right to live in the community.

Representatives to the UN Ad Hoc Committee from Bizchut, the Israel Human Rights Center for People with Disabilities, the Israel Commission on the Equal Rights of People with Disabilities, the International Disability Caucus (IDC),Footnote ⁵⁹ Inclusion InternationalFootnote ⁶⁰ and others took the lead in organising a lobby for the inclusion of the ‘right to live in the community’ in the CRPD. Following interventions by this coalition of groups, the final report of the Sixth Session of the Chair of the Ad Hoc Committee opened its summary of the article on living in the community with the following statement: ‘The key to this draft article is the right of every person with a disability to live in the community’.Footnote ⁶¹ However, the ‘right to live in the community’ language still did not appear in the Convention itself. As a result, ‘efforts to incorporate the exact language of the “right to live in the community” within the CRPD continued up to and during the final negotiation session, from which the final official draft emerged’.Footnote ⁶²

During the break between the Sixth and the Seventh Sessions of the Ad Hoc Committee meetings at the UN, the Chair of the Ad Hoc Committee, Ambassador Donald MacKay, returned to his home in New Zealand. At the suggestion of representatives from Bizchut and Inclusion International, Ambassador MacKay arranged to meet there with several people with disabilities and high support needs who were living in regular apartments in the community. The Ambassador had an opportunity to hear from them directly about their experiences and the importance, to them, of being able to choose where to live and with whom.Footnote ⁶³

At the Seventh Ad Hoc Session on 19–20 January 2006, the article on living in the community came up for its final reading before the Ad Hoc Committee. More than 25 different state delegations supported the right to live in the community, as proposed by the Israeli delegation.Footnote ⁶⁴ These member states agreed that, given the high number of persons with disabilities who still live in institutions, it was not sufficient for the right to live in the community to remain implicit; rather, this right must be explicitly stated within an article of the CRPD.Footnote ⁶⁵ The Chair of the Ad Hoc Committee referred the matter to informal meetings to resolve the final language of what became Article 19. He summarised the previous discussion on the ‘right to live in the community’ as follows:

• • There was strong support for the text, although several important issues had been raised.

• • An approach must be found that protects the freedom of choice of PWD [people with disabilities] while ensuring that existing cultural/religious practices and, in some cases, national laws are acknowledged and not undermined, as long as they are not discriminatory against PWD.

• • Despite the support for Israel's proposal, which resolves some issues in the chapeau, retaining the concept of ‘living independently’ was important to many delegations. This phrase has been extensively discussed in the past and its presence in the text has been supported. Thus language should be found to retain this concept without allowing for its misuse such that PWD who cannot live independently are prevented from living in the community.

• • There was a wide variety of views regarding the articulation of a specific ‘right’, with a strong view in favour of doing so, and there should be informal meetings to discuss this issue.Footnote ⁶⁶

Following this discussion, the revised draft article on community living emerged from the negotiations. It included the explicit right to live in the community for all people with disabilities. As such, the final version of Article 19, as adopted, reads as follows:

With the adoption of Article 19 of the CRPD, the right of all people with disabilities to live in the community is now firmly enshrined in international law. This right extends to people throughout the world, regardless of their country of origin or the severity of their impairment. Yet, despite this accomplishment, the right to live in the community remains elusive for millions of people with disabilities throughout the world today.

One reason why the right to live in the community has not been realised for so many years is that, prior to the CRPD, the domestic disability laws (in those countries that had such laws) did not include a specific right to live in the community (as opposed to institutions).Footnote ⁶⁷ Therefore, even with the CRPD, there is no infrastructure in many countries for the delivery of services in the community. Further, in those countries that have enacted domestic disability laws, some do not include a specific right to live in the community. On the other hand, in those countries that do have domestic disability laws which do include the right to live in the community, this right has not been adequately enforced. This situation may change, of course, as more countries draft new laws or amend their current laws to conform with the CRPD, and to Article 19 in particular.Footnote ⁶⁸ Recent cases filed in regional human rights tribunals that are challenging institutionalisation may also result in greater enforcement of the right to live in the community in those countries subject to the jurisdiction of regional human rights courts.Footnote ⁶⁹ As for the United States and Israel, both have comprehensive domestic disability laws. Indeed, Israel's law is based on the Americans with Disabilities Act, which was enacted in 1990 and had enormous effect worldwide in spurring the development of disability laws in other countries.Footnote ⁷⁰ Both the US and Israel also have signed the CRPD, although as of the date of this writing, neither country has ratified it. Yet, despite the existence of domestic disability laws in the US and Israel as well as their commitment to the CRPD (evidenced by their signatures to the treaty), in both countries thousands of people with disabilities continue to live in institutions, deprived daily of the opportunity to live in their own homes in the community. In the following sections of this article, I will discuss the right to live in the community under the laws of the US and Israel, respectively, and the challenges that lie ahead in implementing the CRPD's ‘right to live in the community’ in these countries and elsewhere.

3.1 History of the Right to Live in the Community in the United States

The United States, like many countries, shares a despicable history of segregating people with disabilities, particularly those with mental disabilities, in large, remote institutions. In the US, the forced institutionalisation of persons with disabilities reached its peak in the first half of the twentieth century, when most, if not all, states passed laws that singled out people with disabilities for institutionalisation as part of the eugenics movement.Footnote ⁷¹ Such laws encouraged the institutionalisation of those who were considered ‘a menace to society’.Footnote ⁷² Institutionalisation was seen as necessary to relieve society of the ‘heavy economic and moral losses arising from the existence at large of these unfortunate persons’.Footnote ⁷³ Some state legislation even authorised the removal of children with disabilities from their homes against their parents' wishes. The State of Washington, for example, made it a crime for a parent to refuse state-ordered institutionalisation.Footnote ⁷⁴ Further, parents were also required to waive all custody rights once they placed their children in institutions.Footnote ⁷⁵

Following the horrors of the Second World War, US policy makers and advocates sought alternatives to institutionalisation and began to expand services for people with disabilities in the community. Consequently, in 1954, the US Congress passed the country's first broad-based rehabilitation legislation, the Vocational Rehabilitation Amendments, which expanded community-based rehabilitation programmes for people with a range of disabilities.Footnote ⁷⁶ 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 programmes (including state institutions and schemes that receive federal funding), as part of the larger movement to achieve community integration and inclusion of people with disabilities in society.Footnote ⁷⁷ Moreover, in 1984, Congress passed the Developmental Disabilities Assistance and Bill of Rights Act, which requires states to guarantee to individuals with developmental disabilities the right to receive treatment in the setting least restrictive to the individual's personal liberty.Footnote ⁷⁸ The Federal Fair Housing Law, which was amended in 1988, includes a prohibition on discrimination against people with disabilities in housing. But this law is limited to private housing and provides as its only enforcement mechanism the right of the complainant and/or the government to pursue legal action in court.Footnote ⁷⁹

The Social Security Act also supports community living by requiring states to develop written case plans to ensure the provision of services in appropriate settings that are the least restrictive to personal liberty.Footnote ⁸⁰ Various state laws also have started to mandate that children and young persons with disabilities receive services in the ‘least restrictive’ environment. More recently, the new national initiative, ‘Healthy People 2010,’ although not legally binding, establishes specific goals and objectives regarding access to health care in the US, including as a national goal the reduction of ‘the number of people with disabilities in congregate care facilities, consistent with permanency planning principles’.Footnote ⁸¹ With respect to children with disabilities, the goal is to ‘[r]educe to zero the number of children aged 17 years and younger living in congregate care facilities’.Footnote ⁸²

The most significant US legislation regarding the rights of people with disabilities is the Americans with Disabilities Act (ADA), enacted in 1990 and amended in 2000 and 2008.Footnote ⁸³ The ADA seeks to eradicate discrimination against people with disabilities in most aspects of life, including the segregation of people in institutions. By enacting the ADA, the US Congress explicitly found that ‘individuals with disabilities continually encounter various forms of discrimination, including . . . segregation’.Footnote ⁸⁴ The Congress also acknowledged that ‘historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem’.Footnote ⁸⁵ Upon introducing the ADA, Senator Harkin, for example, listed as one of the intended purposes of the legislation, getting people out of institutions.Footnote ⁸⁶ As he stated:

Unnecessary and unjustifiable institutionalisation was also specifically identified in congressional testimony by a number of other sponsors and supporters of the ADA, including then-Senator Lowell Weicker:

Despite extensive reference to the continued segregation of people with disabilities in institutions during the drafting and negotiation process of the ADA, the Act itself does not prohibit institutionalisation per se, nor does it mandate community living for all people with disabilities. The closest the ADA comes to prohibiting institutionalisation is in Title II, which prohibits discrimination by state and local governments in the services they provide.Footnote ⁸⁹ But neither Title II nor its implementing regulations require community living in all cases. As a result, even with the ADA, thousands of people with disabilities in the US continue to live in institutions or in community homes that function more like institutions than ‘homes’.Footnote ⁹⁰

The regulations implementing Title II of the ADA, which were promulgated by the US Department of Justice (DoJ), require all public entities to ‘administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities’.Footnote ⁹¹ This ‘integration mandate’, as it has become known, also requires all public entities to ‘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’.Footnote ⁹²

In addition to these statutory mandates, several courts, including the US Supreme Court, have found a constitutional and statutory basis to question the continued use of institutionalisation, especially when community options were available. As early as 1972, the Supreme Court invalidated an Indiana law on constitutional grounds.Footnote ⁹³ The law permitted the state to confine indefinitely ‘a mentally deficient deaf mute’ man who had been adjudged incompetent prior to going to trial. As the Supreme Court wrote in Jackson v Indiana, ‘[a]t the least, due process requires that the nature and duration of commitment bear some reasonable relation to the purpose for which the individual is committed’.Footnote ⁹⁴

In 1975, the US Supreme Court went one step further and held, in O'Connor v Donaldson, that ‘a state cannot constitutionally confine without more a non-dangerous individual who is capable of surviving safely in freedom by himself or with the help of willing and responsible family members or friends’.Footnote ⁹⁵ Although the Court did not define what it meant by ‘without more’, this decision has been interpreted to mean that a person cannot be confined in an institution against his will without receiving treatment as a quid pro quo for confinement. Following O'Connor v Donaldson, other federal courts have applied this quid pro quo rationale to cases involving the involuntary confinement of people with cognitive disabilities as well.Footnote ⁹⁶

In 1978, the federal district court in Pennsylvania issued a groundbreaking decision in Halderman v Pennhurst State School and Hospital (‘Pennhurst’).Footnote ⁹⁷ In this case, the court held that the United States Constitution not only prohibits states from institutionalising people with mental disabilities but also requires states to provide community services for them.Footnote ⁹⁸ Drawing on the 14^th Amendment requirements of due process and equal protection, the Pennhurst court observed that

As one of the lawyers who brought the Pennhurst case wrote recently,

Although the district court decision in Pennhurst was appealed, more than once, including to the US Supreme Court, it has never been reversed.Footnote ¹⁰¹ However, it was not until more than two decades later, in 1999, when the US Supreme Court, for the first time, addressed specifically the right of people with disabilities to live in the community.Footnote ¹⁰² In Olmstead Footnote ¹⁰³ Justice Ginsberg framed the issue in the case as ‘whether the [ADA's] proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions’.Footnote ¹⁰⁴ According to the Supreme Court, the answer to this question was a resounding but qualified ‘yes’. Accordingly, the Supreme Court in Olmstead came as close as has any court in the US to declaring a right of all people with disabilities to live in the community as opposed to institutions. However, the Court stopped short of declaring an absolute right to live in the community. Moreover, unlike Pennhurst, which was decided on constitutional grounds, Olmstead was decided on statutory grounds.

3.2 The Supreme Court's Decision in Olmstead v LC and EW

In Olmstead, the US Supreme Court ruled that the State of Georgia's Department of Human Resources could not segregate two women with mental disabilities in a state psychiatric hospital long after the state's own treatment professionals had recommended their transfer into community care.Footnote ¹⁰⁵ The lower courts had ruled that the state had violated the ‘integration mandate’ of Title II of the ADA, and Georgia appealed.Footnote ¹⁰⁶ According to the Court, the continued institutionalisation of people with disabilities who are capable of living in the community, with or without services, may constitute illegal discrimination.Footnote ¹⁰⁷

The plaintiffs in this case were LC, aged 31, and EW, aged 47, both of whom had been hospitalised repeatedly over two decades. They brought the case in order to receive treatment in the community rather than in the state psychiatric institution.Footnote ¹⁰⁸ LC sued, originally on her own, claiming that the State of Georgia had violated her right to be free from discrimination in the receipt of services provided by the state, as guaranteed under Title II of the ADA. Soon after her case was filed, another patient in the state institution, EW, intervened to join in the case with the same legal claim.Footnote ¹⁰⁹ The State of Georgia argued that it was not discriminating against these women but that it lacked funds to provide services to them in the community rather than in the institution. The state also argued that granting the women's claims would ‘fundamentally alter’ its entire mental health system by requiring the closing of all state hospitals.Footnote ¹¹⁰

The district court rejected Georgia's claims. It held that the state's actions violated Title II of the ADA by segregating both women in an institution rather than placing them in an integrated setting under the state's community-based services programme. On appeal, the Eleventh Circuit Court of Appeals affirmed the decision of the district court and remanded the case to determine whether the alleged additional expense to Georgia for community placement would ‘fundamentally alter’ the state's mental health system.Footnote ¹¹¹ 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.Footnote ¹¹²

The US Supreme Court granted certiorari. In the Supreme Court, the two women were supported by a number of states and disability organisations as well as the US Solicitor General. In a 6:3 ruling, the Supreme Court rejected the State of Georgia's claims and affirmed the right of the women to receive care in the ‘most integrated’ setting appropriate. The Court held that the ‘unjustified segregation of people in institutions, when community placement is appropriate, constitutes a form of discrimination prohibited by Title II [of the ADA]’.Footnote ¹¹³ The court clearly recognised the connection between institutionalisation and discrimination when it wrote that

Not only was the denial of services in the community illegal under the ADA, but the negative effects of institutionalisation were evident, as the court wrote:

As a result of the Court's holding in Olmstead, states are now required to place persons with mental disabilities in community settings rather than in institutions ‘when the state's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities’.Footnote ¹¹⁶ Although the Court indicated that states should make ‘reasonable accommodations’ to their long-term care systems, it also stated that states are not required to make ‘fundamental alterations’ to their mental health systems.Footnote ¹¹⁷

According to the Supreme Court, both the district and appellate courts had applied the wrong standard regarding the state's fundamental alteration defence. The Court found that the district court had erred when it compared the costs of treatment in the community with the costs of institutional care because such a comparison does not account for the costs associated with the state's continuing operation of institutions for those who do not satisfy the Olmstead test for community placement.Footnote ¹¹⁸ Likewise, the Supreme Court thought the Court of Appeals erred by comparing the cost of providing care to the plaintiffs in the community with the state's entire mental health budget because such a comparison would necessarily result in a decision in favour of community care for certain individuals.Footnote ¹¹⁹ In rejecting these two methods, the Supreme Court set forth its own standard for applying the fundamental alteration defence, as follows:

The Court suggested, therefore, that a state could prevail in establishing a fundamental alteration defence by demonstrating that it has a ‘comprehensive, effectively working plan for placing qualified individuals in less restrictive settings, and a waiting list that moved at a reasonable pace not controlled by the state's endeavours to keep its institutions fully populated’.Footnote ¹²¹ The question of what constitutes a fundamental alteration in a given case, however, will continue to be debated in states throughout the US that are seeking to increase community-based care for people with mental disabilities, as discussed in the next section of this article.

3.3 Post-Olmstead Cases Upholding the Right to Live in the Community

An analysis of US court decisions following Olmstead sheds light on the scope and potential impact of the Olmstead decision on the development of community alternatives to institutional care in the United States and perhaps elsewhere. In most such cases, lower courts have decided that ‘evidence of active engagement and slow progress’ by a state towards more community-integrated long-term care satisfies the ADA mandate.Footnote ¹²² Moreover, a 2009 report found that in the decade following the Olmstead decision, the federal government had provided no oversight of Olmstead enforcement efforts and that states had incurred no penalties for failing to make reasonable efforts to end unnecessary institutionalisation. The result of this inaction, the Report concludes, is that in the ten years following the Olmstead decision, little progress had been made in reducing the numbers of people with disabilities, nationwide, who live in institutions.Footnote ¹²³

That situation has begun to change, however. A recent decision by a federal district court in New York and efforts by the US Justice Department have signalled greater enforcement of the Olmstead decision throughout the US. The most significant decision in defining the potential impact of Olmstead is Disability Advocates, Inc v Paterson (‘DAI v Paterson’), which was decided in 2009 by the Eastern District Court of New York but reversed by the Court of Appeals for the Second Circuit on the grounds of standing.Footnote ¹²⁴

In a 130-page decision, the Eastern District Court held in DAI v Paterson that New York State had denied thousands of individuals with mental illness in New York City the opportunity to receive services in the most integrated setting appropriate to their needs by placing them in adult care homes, which were referred to as ‘community living programs’ but which functioned like institutions.Footnote ¹²⁵ The court found that the State of New York had failed to comply with the Olmstead decision and the ADA's integration mandate.Footnote ¹²⁶ Accordingly, the district court ordered the State of New York to provide services to the plaintiffs ‘in the most integrated setting appropriate to their needs, enabling them to interact with people who aren't disabled as much as possible’.Footnote ¹²⁷ The district court was persuaded that the plaintiffs would be better served by living in supported housing, with mental health workers giving them the services they need when they need them, and at no greater expense to the state.Footnote ¹²⁸

The district court in DAI v Paterson carefully examined the parties' positions to determine, for itself, whether the community settings at issue satisfied the integration mandate of the ADA. In so doing, the court found that, although the State of New York called the homes at issue ‘community placements’, they ‘gave the appearance of institutions’, and were designed, just as institutions are, to accommodate large groups of people spending most of their time there.Footnote ¹²⁹ As the experts testified, these so-called homes clearly resembled institutions because (1) all of the residents were people with disabilities; (2) the residents had to line up for meals and medication; (3) the residents received treatment by doctors and nurses on site rather than going to local health clinics; (4) the residents were assigned room-mates and could not choose their own; (5) the residents received calls through a main switchboard; (6) the rules of the home required visitors to sign in, and prohibited residents from having visitors in their rooms, except with permission; (7) most places also prohibited overnight guests or guests at meal time, and (8) the doors to these facilities were locked at night.Footnote ¹³⁰ Such characteristics occur in institutions and not in one's own home.

In reaching its decision, the district court found instructive the testimony of experts who contrasted the community placements at issue in this case with more homelike settings, such as supported housing, which provide permanent homes in buildings scattered throughout the city's regular housing stock. The court also found persuasive the expert testimony that the days of the ‘linear continuum’ (when people are moved from more to less restrictive residential settings) are gone in the United States, at least.Footnote ¹³¹ The State of New York had argued that some people choose to live in institutions and institution-like settings in the community, and that the state should not have to force people out of institutions if that is where they choose to live. The district court rejected the state's argument. According to the court, ‘if provided with information about the nature of supported housing along with the programmatic and financial supports that would be available, the great majority of adult home residents will very likely choose to move to integrated settings’.Footnote ¹³² In fact, the court added ‘as numerous witnesses testified … having a stable, safe, and permanent place to call home is a universal desire’, and people with disabilities are no different from anyone else in this regard.Footnote ¹³³

In the subsequent remedial order on 1 March 2010, the district court ruled that

Had the Court of Appeals for the Second Circuit not dismissed the case on appeal, the State of New York would have been required to find individual or shared apartments or homes for the more than 4,300 mentally ill people (who are not considered dangerous to themselves or others) who want them.Footnote ¹³⁵ However, on 6 April 2012, the Court of Appeals for the Second Circuit dismissed the case. The Second Circuit found that the DAI plaintiffs lacked associational standing required by Article III of the US Constitution. By so doing, the Court has vacated the district court decision and, in effect, sent the plaintiffs back to court, this time with individuals as named plaintiffs.Footnote ¹³⁶

Both before and since the dismissal of DAI v Paterson, the US Department of Justice (DoJ) has launched an aggressive effort to enforce Olmstead. In 2009, the DoJ reached a settlement with the State of Texas regarding conditions in the state's 13 facilities. The DoJ has also filed amicus briefs in Olmstead-type cases in Connecticut,Footnote ¹³⁷ Virginia,Footnote ¹³⁸ North Carolina,Footnote ¹³⁹ Illinois,Footnote ¹⁴⁰ Florida,Footnote ¹⁴¹ and New Jersey.Footnote ¹⁴² All of these cases seek to ensure that people with physical, psychiatric and developmental disabilities can leave institutional settings in order to live in supported housing, to receive services in their own homes, and to ensure the right of people with disabilities who are now living at home to remain there.Footnote ¹⁴³

Further, in January 2010, the US Justice Department (DoJ) filed a case against the State of Georgia in respect of its continuing reliance on the seven state institutions rather than developing community alternatives for people with developmental disabilities and for people with a diagnosis of mental illness.Footnote ¹⁴⁴ Similarly, in May 2010, the DoJ sued the State of Arkansas for its ‘systemic failure’ in placing people with disabilities in institutions rather than pursuing less restrictive avenues for their care. According to the complaint, the State of Arkansas ‘gives individuals with developmental disabilities the draconian choice of receiving services in segregated institutions or receiving no services at all’.Footnote ¹⁴⁵ These cases are still pending.

More recently, on 6 July 2011, the US DoJ entered into an agreement with the State of Delaware that will guarantee housing in the community rather than in institutions for people with disabilities, thereby transforming the state's mental health system in order to comply with the decision in Olmstead.Footnote ¹⁴⁶

Thus in the United States, the right to live in the community is neither absolute nor automatic, even with the passage of the ADA and the Supreme Court's decision in Olmstead. The Justice Department has had to sue or intervene in ongoing cases in order to require states to fulfil their legal obligations to provide services in the ‘most integrated’ setting, as required by the ADA and Olmstead. In the meantime, many people with disabilities throughout the US remain segregated in institutions, often even after the state's own professionals have determined that they are eligible and able to live in the community, with or without support services. However, the ADA has provided the legal basis for courts to examine carefully the right of all people with disabilities to live in the community rather than in institutions, unlike the situation in Israel, as discussed in the following section.

4.1 The Israeli Equal Rights Law for People with Disabilities

The Israeli Equal Rights Law for People with Disabilities (‘Equal Rights Law’) is one of the most comprehensive disability anti-discrimination laws in the world today. It is modelled on the ADA and similar laws in Australia, Sweden and Canada. The law recognises, for the first time in Israeli law, that people with disabilities are a minority group who suffer from discrimination, segregation and mistreatment on the basis of disability.Footnote ¹⁴⁷ However, because of opposition by the Minister of Finance at the time it was introduced, the Knesset Committee referred only five sections of the proposed law to the Knesset for approval.Footnote ¹⁴⁸ These five sections were eventually adopted into law and include the general principles as well as a prohibition on discrimination in employment, accessibility of new and existing buildings and services, and transportation. To its credit, the law also creates the Commission for Equal Rights of Persons with Disabilities, which is one of only a handful of such Commissions in the world. The Commission is charged with implementing and promoting the law, preventing discrimination against people with disabilities, encouraging the integration and active participation of people with disabilities in society, and fulfilling the functions vested in it by law.Footnote ¹⁴⁹ At the time of this writing, the regulations to enforce portions of the law are under consideration by the Knesset.

The proposed section on living in the community in the original version of the Equal Rights Law affirmed the right of all persons with disabilities to live in the community. It also guaranteed persons with disabilities personal assistance to promote independence and full participation in the community, including assistance with personal care, everyday activities and household tasks, as well as translation and interpreter services. The Explanatory Memorandum accompanying the law includes a discussion of the community living section and is unequivocal in its interpretation of what equality and dignity mean to people with disabilities living in the community. As the Memorandum states:

However, the section on community living in the Equal Rights Law was not approved by the Knesset when it accepted the law for its final reading in February 1998; nor was it accepted by the Knesset when it approved the final version of the law on 1 January 1999.Footnote ¹⁵¹ In fact, according to the Commission for Equal Rights of Persons with Disabilities, it will be some time before the Knesset even considers the remaining sections of the law, including the section on community living;Footnote ¹⁵² this section, like other sections of the law, has been put on hold to allow time for the Ministry of Finance to consider its budgetary implications.Footnote ¹⁵³

Thus, in Israel – unlike in the United States, which has the ‘integration mandate’ in the regulations implementing the ADA – there is no explicit right to live in the community in the current version of the Equal Rights Law nor in the draft of its implementing regulations. However, the draft regulations of the Equal Rights Law require the state to ensure that all services it provides or funds are provided on a non-discriminatory basis. Further, additional legal protections exist to enforce the rights of individuals with disabilities to live in the community in Israel.

The first source of protection for the right of people with disabilities to live in the community appears in the opening section of the Equal Rights Law. This section describes the purpose of the law:

Living in the community may be seen as the condition precedent for all other rights related to one's participation in the community.

In addition, Article 6 of the Equal Rights Law offers additional support for the right to live in the community since it requires ‘[s]trict attention … to the dignity and freedom of the person and to the protection of the person's privacy’, and ‘within the framework of services provided in society and aimed at the general public’, while ‘adjustments shall be made as required by the particular circumstances, and as stated in this Law’.Footnote ¹⁵⁵ Accordingly, to the extent that the ‘general public’ receives services in the community, so should people with disabilities, as required by Article 6.

The chapter entitled ‘Fundamental Principles’ in the Equal Rights Law provides additional support for the right to live in the community by stating that the ‘rights of people with disabilities and the obligation of Israeli society toward these rights are founded upon recognition of the principle of equality, man's worth – created in God's image – and on the principle of respect for all human beings’.Footnote ¹⁵⁶ The chapter entitled ‘General Principles’ also recognises that a person with a disability ‘is entitled to make decisions relating to his life, according to his desires and priorities, all in accordance with the provisions of any law’.Footnote ¹⁵⁷ Indeed, one could argue that if a person with a disability is not living in the community, then he or she cannot enjoy any of the other rights protected by the Equal Rights Law, including equal access to buildings and public services, employment and transportation.

4.2 Additional Protection for the Right to Live in the Community

In addition to the Equal Rights Law, other Israeli laws and policies reinforce the right to live in the community for people with disabilities. For example, the Rehabilitation of the Mentally Disabled in the Community Law (‘Rehabilitation Law’) was enacted in 2000, following the failure of the third attempt in 1996 to reform Israel's mental health system.Footnote ¹⁵⁸ This law was enacted specifically to include people with psychosocial or psychiatric disabilities in the life of communities by providing individualised rehabilitation programmes, which include community living options.Footnote ¹⁵⁹ In addition to supported housing in the community, the Rehabilitation Law provides supported employment, education assistance, social clubs and other services.Footnote ¹⁶⁰

The Rehabilitation Law, together with the development of rehabilitation services in the community and the government's plan for reducing the number of psychiatric beds in the country, has had a dramatic effect on the right to live in the community for thousands of people with psychiatric disabilities in Israel.Footnote ¹⁶¹ From 1996 to 2006, the number of psychiatric beds in Israel declined by 50 per cent, from 6,599 to 3,453.Footnote ¹⁶² The length of stay in mental hospitals also declined by 60 per cent between 1995 and 2005 and persons discharged from inpatient services spent longer periods in the community before re-admission.Footnote ¹⁶³ Moreover, the number of people with psychiatric or psychosocial disabilities living in the community had more than tripled by the end of 2007, from about 2,150 in 2000 to 7,284.Footnote ¹⁶⁴ Further, more than half of the beds in psychiatric institutions have been emptied, and more than 13,000 people with psychosocial disabilities, who at one time would have been institutionalised, now receive rehabilitation services that enable them to live in the community.Footnote ¹⁶⁵

Recent research reveals, however, that although the number of patients in mental hospitals and their length of stay have declined markedly since 2000, the number of government mental hospitals in Israel has remained the same.Footnote ¹⁶⁶ In other countries in which community schemes have been developed to replace institutional custodial care, the number of mental hospitals decreased so that the money saved followed the patients into the community. This has not been the case in Israel.Footnote ¹⁶⁷ In fact, despite the substantial reduction in the number and rates of inpatient admissions in Israeli mental hospitals between 1997 and 2006, not only has there been no decrease, but there has been an increase in the Israeli budget for mental hospitals (as opposed to community care) during that period.Footnote ¹⁶⁸

A second law that was enacted in as early as 1969 – the Care for People with Mental Retardation Act – also includes a specific preference for community living as opposed to institutions, and establishes an entitlement to state support for persons with intellectual disabilities who live in the community, but only in programmes funded by the Ministry, and not in their own homes.Footnote ¹⁶⁹ A 2000 amendment to this law specifically provides a preference for referring people in need of services to living arrangements within the community as opposed to institutions.Footnote ¹⁷⁰ Despite this law, however, more than 7,000 Israelis, or nearly 10 per cent of the disabled population, live in institutions or institution-like settings.Footnote ¹⁷¹

Another law that is relevant to the right of people with disabilities to live in the community in Israel is the 1995 amendment to the Planning and Construction Law of 1965.Footnote ¹⁷² This law provides an incentive for the development of housing in the community for people with disabilities by exempting certain housing for people with disabilities in residential areas from the approval process. As the Explanatory Remarks to the 1995 amendment to the Planning and Construction Law provides:

The Planning and Construction Law has been the basis for a series of court decisions, all of which have upheld the right of people with disabilities to live in the community despite resistance by their neighbours or by the municipalities themselves. A common concern (in Israel and the US) expressed by neighbours of housing facilities for people with disabilities is the drop in property values after a congregate living scheme for people with disabilities opens in a residential neighbourhood. Although Israel has no comprehensive studies on the effect of housing for people with disabilities on property values, studies in the United States have refuted any connection between housing for people with disabilities and lowered property values.Footnote ¹⁷⁴

In cases colloquially referred to as NIMBY (not in my backyard) or LULU (locally unwanted land users), courts in the USFootnote ¹⁷⁵ and IsraelFootnote ¹⁷⁶ have consistently rejected neighbours’ objections to the location of residences for people with disabilities. The Israeli courts have based their decisions on their interpretation of a mandate for inclusion of people with disabilities in the community under either Article 63a of the Planning and Building Law (which authorises housing for special populations) or the human rights principles contained in the Basic Laws. For example, in two recent cases, Israeli courts have held that people with disabilities have a right to live in the community over the objection of their neighbours. Although both courts recognise that neighbours have a right to a minimal standard of living, the courts found that the housing at issue posed no risk to the owners' interests, and therefore ultimately ruled in favour of the rights of the residents with disabilities to live in the housing within their community.Footnote ¹⁷⁷

Accordingly, the Equal Rights Law, the Rehabilitation Act, the Care for People with Mental Retardation Act and the Planning and Construction Law all support the right of people with disabilities to live in the community. Despite these laws, however, many such people not only still live in institutions in Israel, but for those who live in community settings, many of those settings function more like institutions than ‘homes’, as will be discussed below in Section 5 of this article.

4.3 Decisions by the Israeli High Court of Justice on the Rights of People with Disabilities in the Community

In addition to the role of the Knesset in enacting legislation to protect the rights of people with disabilities in Israel, the Israeli High Court of Justice has begun to review cases that allege infringements of the rights of people with disabilities. The first such case was decided in 1996, prior to the enactment of the Equal Rights Law. In this case, Shahar Botser v Municipality of Makabim Local Authority,Footnote ¹⁷⁸ former Chief Justice Aharon Barak of the High Court determined that the failure of a school to make certain areas of the school accessible for a student wheelchair user constituted discrimination.Footnote ¹⁷⁹ Basing his decision on the principles of equality and human dignity found in Israel's Basic Laws, Chief Justice Barak wrote that

Several years later, the Israeli High Court of Justice was asked to apply the principles of equality and human dignity in the Basic Laws as well as the non-discrimination principle of the Equal Rights Law in the case of Lior Levy v State of Israel. Footnote ¹⁸¹ On 15 April 2007, Bizchut, the Israel Human Rights Organisation for People with Disabilities, filed this case in the High Court of Justice on behalf of five young people with severe disabilities and their families, demanding that the state place these young people in apartments in the community, with support as needed.Footnote ¹⁸²

Lior Levy, the named petitioner in the case, is one of five young people with intellectual and physical disabilities, who, together with their families, requested the Ministry of Social Affairs to provide them with supported housing in their local communities so they could move out of their family homes, where they had lived all their lives. One of the petitioners, Michael, was 21 years old when the case was filed and, according to his family, he was ready to live with other people of his age. He has had cerebral palsy since birth, and is labelled as ‘mentally retarded’; he cannot speak and uses a wheelchair. Since his parents are now elderly, it was time for Michael to move into a supported apartment with other people his age, and which would be staffed by professionals to provide him the support he needs.Footnote ¹⁸³

The Ministry of Social Affairs refused to place Michael, Lior and the other young people in their own apartments in the community. Instead, the Ministry offered to move them into a 24-person hostel, where they would ostensibly receive the services they needed. In response to the petition, the Ministry claimed that for these petitioners, ‘[l]iving in an apartment may endanger the[ir] lives and they are safer in an institution with a 24-hour on-call nurse and a medical team available’.Footnote ¹⁸⁴ Michael's sister, who looks after him and takes him for walks and grocery shopping, responded to the Ministry's position by stating in an interview that ‘[i]nstitutions are impersonal, he will cry there and be shy. They won't let him go out on walks. In an apartment he could watch television or go out whenever he wants to’.Footnote ¹⁸⁵

The petitioners submitted lengthy briefs and expert affidavits supporting the right and the appropriateness of community living for these five young people. They presented expert affidavits on the developing international right to live in ‘real homes’ in the community, as well as case law from the United States.Footnote ¹⁸⁶ However, before the Court could reach a decision on the legality of the state's criteria for community placement, the state agreed to change its policy which had automatically excluded from consideration for community placement people with disabilities who needed extensive support services, such as the young people in this case. The Ministry agreed to adopt a new policy, which now provides that people with severe disabilities may be eligible for housing in the community but only ‘if their medical and behavioural needs may be met in the community’. The issue remains, of course, as to who will decide whose medical and behavioural needs can or cannot be met in the community, and how such decisions will be made. Following the Ministry's decision to change its policy, the Court wrote in a brief decision:

Accordingly, the Court ruled that ‘the petition has achieved its goal’,Footnote ¹⁸⁸ but left open the option of returning to the Court in the event that the state did not move swiftly to find appropriate community placements.

Although the involvement of the Israeli High Court of Justice in the Lior Levy case has ended, the dispute has not. Following the Court's decision, the Ministry of Social Affairs informed the young adults and their families that they had located a building that could be used as a hostel for 24 residents in an Israeli-Arab village, Beit Tsafafa. The petitioners argued that the proposed hostel is not consistent with the Court's decision regarding their right to live in the community because, as Jewish Israelis, they would not be able to interact easily with their Arab Israeli neighbours, whose culture and language are different from their own.Footnote ¹⁸⁹

At first, the petitioners' objection appears to be discriminatory. But unlike in the United States, where diversity within and among neighbourhoods is valued and segregation is prohibited by US law, Israeli law recognises and legitimates separate neighbourhoods, based on religious and ethnic identity. Thus, the family objected that, because government-supported homes consisting only of Jewish residents in Israeli-Arab villages generally do not exist in Israel, the Ministry's decision to locate this facility in an Arab village was discriminatory on the basis of the proposed residents' disability. Shortly thereafter, a public rally organised by the families and their supporters resulted in the government's decision to back down from its recommendation to place the petitioners in the proposed hostel in Beit Tsafafa. The state agreed to offer an alternative community living option. However, as of 1 May 2012, none of the five residents live in their own apartments: one plaintiff died, two others still live with their parents, and the fifth plaintiff lives at the Aleh Institution.

The outcome of the Israeli High Court's decision in Lior Levy is mixed. On the one hand, the policy of the Ministry of Social Affairs that had automatically excluded from consideration for community living any person with a disability who needed extensive support services is no longer in place. Adults with even severe disabilities are now eligible for housing in the community so long as their medical and behavioural needs may be met. The issue remains, of course, as to who will decide whose medical and behavioural needs can or cannot be met in the community and how such decisions will be made.

On the other hand, the Court upheld the Ministry of Social Affairs' position that hostels (or any large congregate facility for as many as 24 or more people) qualify as housing in the community. The petitioners had argued that placing them in a hostel with 24 strangers was not consistent with their right to live in the community, and that it is more like an institution than one's ‘home’. The Court ruled for the state on this issue, and concluded that the proposed hostel is ‘a reasonable and moderate solution, not far off from the apartment setting the plaintiffs were seeking’.Footnote ¹⁹⁰ In so doing, however, the Court failed in its duty to consider the expert and other evidence presented in the case that established, as a legal matter, the difference between life in a hostel of 24 people and a real home in the community.

The Israeli High Court of Justice in Lior Levy seemed to accept at face value the state's position regarding the reasonableness of placing the petitioners in a large institution-like hostel. The Court refused to carefully evaluate the arguments against the Ministry's position or discuss the evidence presented regarding the quality of life for people in a large hostel, or any of the evidence presented to the Court by Bizchut and its experts regarding the families' preferences and the needs of the adult children.Footnote ¹⁹¹ In fact, unlike the recent US district court decision in DAI v Paterson as well as the US Supreme Court's decision in Olmstead, the Israeli High Court of Justice did not even mention the components of community living which were at stake in this case. In both Olmstead and DAI v Paterson, the respective courts carefully examined the meaning and scope of the right to live in the community to determine whether or not what the state calls ‘community living’ is actually a setting that allows people with disabilities to experience life in the community and that ‘fosters community interaction with nondisabled persons to the fullest extent possible'.Footnote ¹⁹² As the court in DAI v Paterson held, the state's ‘failure to provide placement in a setting that enables disabled individuals to interact with non-disabled persons to the fullest extent possible violates the [law]’.Footnote ¹⁹³

The High Court of Justice in Lior Levy originally ruled that community living is ‘indeed a part of the greater right to equality of people with disabilities and of their rights to dignity and active participation in the community’, and ‘a real revolution for the rights of people with disabilities, reflecting the face of society and the state of human rights within it’.Footnote ¹⁹⁴ But, in the end, the Court refused to require the State to comply with the petitioners' request for typical housing in their local community. As such, the significance of the Lior Levy decision is arguably undermined by the Court's own failure to provide a practical remedy to enforce the petitioners' right to live in the community. It will now be up to the Ministries, in co-operation with NGOs, to formulate and implement a policy to enforce the right of all people with disabilities to live in the community with choices equal to others, as the CRPD provides.

In a second related case, decided on 21 June 2011, the High Court of Justice was presented with a petition by Bizchut against the Ministry of Health and the Ministry of Welfare and Social Services alleging violence, abuse, neglect and humiliation of the residents at Illanit, a private institution which houses 140 adults with mental, cognitive or intellectual disabilities or autism between the ages of 20 and 70.Footnote ¹⁹⁵ According to court records, Illanit had been operating since the 1950s, but six years ago the Israeli government decided to close it based on its own investigation that revealed systematic abuse and mistreatment of the residents. The institution was never closed, however. Consequently, Bizchut, together with MK Ilan Gilon and others, visited Illanit in the summer of 2010 and found there unacceptable conditions, including walls smeared with new and dried faeces, residents laying naked on the ground, residents tied to chairs for hours, serious bruising and evidence of beatings on the bodies of residents, and an overall atmosphere of neglect and disregard for the residents' welfare. Bizchut submitted its report to the Ministry of Welfare and Social Services, which responded by informing Bizchut that it would be prohibited from visiting any institutions in Israel. In its decision in this case, the High Court of Justice required the Ministry to allow Bizchut to visit Illanit, but refused to address the underlying claims regarding the objectionable living conditions.

Based on the decisions of the Israeli High Court of Justice in Lior Levy and Illanit, it appears that the Court will defer to the Israeli government on the question of what constitutes community living as well as how to protect the welfare of people in institutions, even institutions which may subject its residents to human rights abuses, as alleged by the petitioners in Illanit. Perhaps future cases will be resolved differently. Like the United States, Israel has signed the CRPD and plans are under way for Israel's ratification of the CRPD. One can only hope that the new Convention will set the standard from which a new interpretation of the human rights protection for people with disabilities will apply in both Israel and the US. Indeed, the CRPD has the potential to play a major role in bolstering domestic disability laws and curtailing the limitations placed on the right to live in the community. The road to ratification of the Convention by Israel and the US may be long, but their signatures to the CRPD have already created a bona fide obligation on these countries to refrain from acts that would defeat the object and purpose of the treaty.

5.1 The Meaning of the Right to Live in the Community

As illustrated by the previous discussion of the cases of Lior Levy, Olmstead and DAI v Paterson the right to live in the community for people with disabilities is not yet firmly established in either US or Israeli law. Indeed, the complexity of the issue has raised some serious questions about the very meaning and scope of the right to community living.

While it is true that not all people with disabilities are capable of living on their own, that is not what the right to live in the community requires. Living in the community generally means the opportunity to live in housing, as independently as possible, and with support, as needed. People with disabilities, like people without disabilities, need help at times with certain tasks, or to make certain decisions, and some people need more help and more often than others. Yet even people with the most challenging physical and/or mental disabilities, who cannot speak or communicate in traditional ways, may be able to express their preferences.

Those who provide services to people with disabilities, as well as family members or guardians, sometimes assume that if a person cannot communicate by talking or writing the person has no opinions, likes or dislikes. Accordingly, programme models have been developed in the United States and Israel based on the idea that all people with disabilities, especially those with severe disabilities, need a safe place to live, eat and sleep, which may be provided just as easily (and supposedly more cost-effectively) in institutions or congregate living facilities, rather than in typical residential housing or apartments.

Recent studies show, however, that when people with communication disorders do communicate with assistance, they are able to express just what they want to do and with whom.Footnote ¹⁹⁶ Indeed, people with all types of cognitive and communication impairments can do many activities including communicating, eating, moving, and even thinking – albeit perhaps in ways that are different from those considered to be normal for ‘non-disabled’ people. The question for courts and legislatures, therefore, becomes whether such differences should be the basis to deny a person the right and opportunity to live in a home in the community. As research has shown, people with disabilities, even those with severe disabilities who cannot walk or talk on their own, can still benefit by community living, by interaction with their neighbours and, in some cases, by developing personal relationships and learning to make decisions about their own lives.Footnote ¹⁹⁷

Further, even if a person with a disability never interacts with others in his or her neighbourhood, does that justify depriving that person of the opportunity to live in his or her own home in the community as a matter of law? The right to live in the community, as envisioned in the CRPD, is not based on whether or not the person is able to live in the community, or even whether or not the person will benefit from living in the community, according to the judgment of a professional.Footnote ¹⁹⁸ Professional judgment is relevant to decisions about medical or therapeutic treatment, but not to the decision of where a person – with or without disabilities – should live. That is, arguably, a personal decision, not a medical decision. Nor should people with disabilities be required to give up their right to live in the community in order to receive treatment or support services. To require a person to move into an institution or other institution-like setting in order to receive the services or supports they need from the state constitutes discrimination, per se, as the Court found in Olmstead. It also violates the individual's fundamental right to live in the community, with dignity, equality and self-determination, as provided in the new CRPD, the ADA, as well as the Equal Rights Law and the Basic Laws of Israel.

5.2 Defining the Scope of the Right to Live in the Community in Israel

There are many schemes in Israel that call themselves community living, but which in fact separate people, based on their disability, from the rest of society. Although such programmes seek to create housing for people with disabilities outside of traditional institutional settings, none of them comply fully with the CRPD's vision of ‘the right of community living, with choices equal to others’.

For example, in Israel there is now under way a proposal by an organisation known as Alin Beit Noam to build a new multipurpose campus located on forest land in the middle of the country. This new campus, to be called Ilanot Kadima, will offer a day-care centre and housing units for adults with intellectual and physical disabilities as well as apartments for people without disabilities, such as students from nearby colleges. The proposed campus will also include a recreation centre, a spa, a pool and an adventure park, all of which will be open to the residents and the general public. The founder of this new scheme believes that ‘if we cannot bring them to the community, then we will bring the community to them’.Footnote ¹⁹⁹

The $22 million project will be funded by the Ministry of Social Affairs, donations and user fees. The plans for this new campus were interrupted initially by an objection filed by the Society for the Preservation of Nature in Israel (SPNI).Footnote ²⁰⁰ The SPNI, an organisation that works to protect Israel's natural resources, sought to stop the development of the project because of its location on public green space. Bizchut, the Human Rights Center for People with Disabilities, joined with the SPNI to stop the development of the proposed campus, claiming it is discriminatory by unnecessarily moving people with disabilities to a segregated setting. Bizchut believes that rather than develop an isolated campus community – albeit one that will be open also to some non-disabled people – the Ministry and the programme operators should instead provide additional opportunities and support for people with disabilities to live successfully in existing communities.Footnote ²⁰¹

One of the arguments for the creation of the proposed campus is that the parents of some of the prospective residents complained that their adult children have been unhappy and lonely in their current living arrangements in the community. Consequently, the Disability Rights Clinic of Bar Ilan University, a law clinic dedicated to advancing the rights of people with disabilities, offered its support to the campus project in order to protect, in their words, ‘the right of these families to choose’.Footnote ²⁰² The case was decided in favour of Alin Beit Noam.

This issue that relates to preserving the right of people with disabilities (or their parents, in this case) to choose an institution or institution-like setting is problematic. As the court found in DAI v Paterson, many people with disabilities are not aware of all the choices available to them. For example, rather than establish a campus far away from any community, perhaps efforts should be undertaken to combat the feeling of loneliness and isolation in the community that these family members reported. Indeed, Article 19 specifically recognises the obligation of the state to ensure that community services ‘are responsive to their needs’, including, I would argue, their need for support and activities to avoid the loneliness that some people with disabilities may experience.

Further, while it is true that some people with disabilities do not interact with their neighbours, many do and become part of their neighbourhoods. Indeed, that is true for people with and without disabilities alike. It is also true that people with disabilities report loneliness and isolation more often in institutions, surrounded by hundreds of people, than they experience in their own homes or apartments in the community. For example, in 2001, a study by Brookdale Institute found that about one quarter of the residents of sheltered apartments and hostels had a close relationship with a fellow resident, compared to only 8 per cent of the residents of the institutions.Footnote ²⁰³ What are the factors that contribute to such loneliness or, on the other hand, to successful integration in the community by people with disabilities? These are questions that are ripe for research.

Perhaps most importantly from a policy point of view, however, is the question of who is to blame for the fact that people with disabilities are lonely in the community. Whose responsibility is it to provide opportunities for people with disabilities to interact with their neighbours? For example, if an individual with a disability feels lonely and is not comfortable or able to introduce himself or herself to the neighbours, then is the proper response to move the person to another setting? On the contrary, rather than uproot the person, the proper response should be to hire and train professionals to facilitate the interaction between the person and his or her neighbours. Indeed, that is part of what learning to live in the community means. Unfortunately, instead of assisting individuals with a disability to develop relationships with people in the community, the person with a disability is often ‘blamed’ for his or her failure to become part of the community, and not given any option other than moving back to an institution or, as in the case of Ilanot Kadima, to a remote campus.

Thus, in Israel, as in the US and elsewhere, there are many examples of housing for people that is referred to as housing in the community, but is not actually a home at all.Footnote ²⁰⁴ As the expert in DAI v Paterson testified, a ‘segregated setting for a large number of people that, through its restrictive practices and its controls on individualization and independence limits a person's ability to interact with other people who do not have a similar disability’ is not a home but an institution.Footnote ²⁰⁵ According to this concept of a home in the community, housing arrangements such as the proposed 24-person hostel in Lior Levy, the proposed Ilanot Kadima campus, as well as countless examples of hostels in Israel and group homes in the US are more like institutions than real homes.

5.3 Arguments in Favour of the Right of People with Disabilities to Live in Their Own Homes

Most people with disabilities throughout the world live in their own homes or with their families. They work, go to school, have children and contribute to society. But many people with disabilities also face social isolation and even exclusion from their own families, particularly those who live in institutions – some for their entire lives. In the United States alone, at least 989,581 persons with disabilities currently live in institutions.Footnote ²⁰⁶ In Israel, out of 700,000 people who receive state support, at least 70,000 live in institutions.Footnote ²⁰⁷

The reliance on institutions for children and adults with disabilities, particularly those with intellectual or psychosocial disabilities, is the result of several factors. First, in most countries throughout the world, institutions were developed as a way to protect society from those who were considered to be dangerous or misfits – people whom society decided were better off ‘out of sight and out of mind’.Footnote ²⁰⁸

A second reason for the creation and continued use of institutions for people with disabilities relates to the perceived cost benefits of institutions over community living options. The costs of providing care and services to people with disabilities in institutions or other congregate living settings is thought to be less expensive than providing care and support to people in their own homes or in typical apartments in residential neighbourhoods. However, the evidence is unclear; it does not establish the cost efficiency of congregate living facilities as opposed to supported housing options in the short or long term. Indeed, little evidence exists to support the conclusion that community living for people with disabilities, even those with the most severe disabilities, is more costly over time than maintaining institutions.Footnote ²⁰⁹ Israel's own leading research institute, the Brookdale Institute, found that the monthly costs of maintaining people with disabilities in institutions may be far greater than the cost of maintaining them in the community, including in small supported apartments.Footnote ²¹⁰

Comparing the costs of institutions, hostels and other housing options for people with different types of disability is difficult, if not impossible. Of the many studies that have been conducted, each includes different populations, different factors and variables, not to mention different cultures and values. For example, when determining the cost of a person in an institution, such costs per resident may include a percentage of the facility's overall budget for food, building and upkeep costs, custodial care, staff time, rehabilitation and other services, medication and health care. But each of these factors may have different funding streams, so the calculations may depend on who is counting which expenditures in which budgets. If the Ministry of Welfare and Social Affairs is estimating institutional costs from its own budget, it may not count costs that are provided by other sources within the government or from NGOs, donations, or parental contributions.

Further, people in institutions may receive many services by the staff employed by the institution. But if the same people were living in the community, they may choose not to avail themselves of so many services, resulting in what would appear to be higher costs for the institution. Moreover, a common argument that has been expressed among Israeli officials is that once the government begins to offer services in the community rather than requiring people to move into institutions or hostels to receive services, many more people may want to receive such services, thereby requiring a higher expenditure for a new group of people seeking community services.Footnote ²¹¹ Yet, little evidence exists in Israel or elsewhere to support the conclusion that community living for people with disabilities, even the most severe disabilities, is more costly over time than maintaining institutions.Footnote ²¹²

In fact, of those studies that have found institutions to be more costly than community living options, the results may be owing to the fact that such studies compared the costs of supporting people with severe disabilities and intensive needs in institutions with people who have less intensive needs, receive fewer services and live in the community. In addition, people who work in institutions are more likely to be unionised (in the US) and are paid much higher salaries than those who work in the community for barely the minimum wage. In Israel, this is an important difference since many community schemes for people with disabilities rely on volunteers who are not paid salaries at all, but are funded through the National Service or other programmes that recruit volunteers within Israel and from other countries, such as Germany. If the salaries and benefits were the same for people who work in institutions and those who work in the community, the cost differentials would be less or disappear entirely.

Another factor that is often ignored in the calculations that compare the costs of institutions and community care is the cost of maintaining the institutional system itself. Such costs include the Ministries' overheads, government staff who administer the programmes, as well as annual reports and auditing functions of the government. Research on costs also often fails to factor in the costs of having a person live in an institution versus the taxes that a person who lives in the community and develops skills to obtain a job may pay one day. Of course, specific cost estimates depend on how programmes are designed and implemented; it is certainly possible to create those that are not cost-effective. However, the most important variables that are often not measured in studies comparing the cost of institutional and community living are the many non-tangible benefits of enhanced freedom and participation of people with disabilities or, at the other extreme, the human cost when proper planning is not carried out.Footnote ²¹³

Finally, research into the cost of institutions and community living has not yet even begun to compare the costs relating to self-directed supported housing schemes in which the money goes directly to people with disabilities to purchase their own services in the community, as occurs in the US. Such home-care costs are typically cheaper per person than institutional costs.Footnote ²¹⁴

In short, the issue of costs is not easy to resolve mathematically. Instead, the issue boils down to a question of values. As my colleague, Professor Steve Taylor, Co-director of the Syracuse University Center on Human Policy, Law and Disability Studies – who has worked to promote community living for people with intellectual disabilities for more than three decades – has written,

A third reason for the continued use of institutions and even large hostels for people with disabilities in Israel, in particular, relates to parentalism.Footnote ²¹⁶ This view is based on the government's decision to ‘take care’ of people who it deems are unable to care for themselves. The parentalistic view of disability reveals that the continued use of institutions and hostels is not so much about coercing people into particular living arrangements, as it is about the perception by the government that people with disabilities simply do not have the same ‘right’ as non-disabled people to live where they want and with whom.Footnote ²¹⁷ According to this view, it is the role of government to protect people with disabilities from dangers that may lurk in the community. But such concerns about the potential dangers or risks for people living in their own homes are without merit for several reasons.

First, the view that people with disabilities are at greater risk in the community than they are in secured facilities assumes that the government has no power to develop and provide services that can support people living in their own homes in the community in order to prevent them from becoming placed in danger. It is true that in the US, as elsewhere, many people who left institutions in the 1970s and 1980s did not have adequate community support. However, to the extent that the US or other countries may have erred in the past by their failure to develop adequate support systems for people in the community, is no reason to assume that Israel cannot learn from others' mistakes and prevent similar problems from occurring.

Further, the fact remains that for many people with disabilities in the US and elsewhere, de-institutionalisation brought not loneliness, danger or homelessness, but rather the opportunity to live in their own homes and pursue their life dreams. In fact, in the US, 12 states have now closed all of their institutions for people with intellectual disabilities,Footnote ²¹⁸ and at least 17 states have expended more than 80 per cent of their budgets on people with intellectual disabilities living in the community.Footnote ²¹⁹ No increased danger to the former residents has been reported. Similarly, in Italy – which has now closed all its mental hospitals and which has an extensive system of case management and support for people with psychosocial disabilities – fears about risks to the clients have not materialised. In fact, what such arguments fail to recognise is that far more neglect and abuse occurs in institutions than is experienced in the community, particularly against women with disabilities.Footnote ²²⁰ Having said that, however, government officials and families often have in mind only the best intentions toward people with disabilities. They send people to institutions in order to provide a safe and stable environment for those whom they see as unable to take care of themselves. But such intentions, even the best, may not justify depriving people with disabilities of the opportunity to live in their own homes in the community, as a matter of law, just like people without disabilities.

Second, this parentalistic view assumes that all people with disabilities are the same; they are not. Clearly, people with disabilities have very different needs and capabilities. Some people may have medical, social, rehabilitation or psychological services, or all three. Other people may have no medical needs but may need services that are accessible; at the other extreme are people who are so severely affected by stroke or other diseases that they cannot live without 24-hour nursing care. However, in between are the millions of people who have a range of impairments who need some services, but not for 24 hours a day. Yet, based on its parentalistic impulse, the state will choose to take care of these people in institutions or institution-like settings, and as cheaply as possible.Footnote ²²¹

In Israel, the parentalistic view that people with disabilities need to be taken care of in communal settings rather than in their own homes may be deeply imbedded in Israeli culture. Israel's history of socialism whereby the government provides care and resources to those in need, as well as Israel's communal child-raising culture within the kibbutz movement, may help to explain the Ministry's tendencies towards institutions and congregate living.Footnote ²²² Israel's history of taking in countless children after the Holocaust and placing them in youth villages, as well as the youth villages that continue today for children from abusive families, may also account for Israel's approach to providing services for people with disabilities in communal settings rather than in individual homes, with supports as needed. Such policies, however, can no longer be justified by the communitarian impulses of the early Israel state. Today, socialism has been replaced by privatisation in most areas of life, including on the kibbutz. Further, on those kibbutzim that still exist, there are no longer children's houses where children live apart from their parents. The fact remains that the vast majority of Israelis (without disabilities) today live in their own homes or apartments. Nonetheless, many people with disabilities, even those capable of living on their own (with or without supports), are required to live in institutions or hostels, segregated from society, in order to receive the services they need. As a result, the right of people with disabilities to live in their own homes in typical residential neighbourhoods remains illusory for a large segment of Israel's disabled population.