I. Introduction*

In recent years, the Inter-American Human Rights System has given particular attention to the protection of persons with disabilities. This is reflected in the way the Inter-American Court of Human Rights (Court) has analyzed disability issues in recent cases, and also in the approach the Inter-American Commission on Human Rights (IACHR) has taken through various of its mechanisms to carry out its mandate: public hearings, precautionary measures, thematic and country reports, and on-site visits, among others. This line of work, without a doubt, derives from the international treatment of disability issues since the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD),[i] which has revolutionized disability rights in light of what is known as the social model of disability. In this context, the purpose of this article is to present the main precedents of both organs that compose the Inter-American System, the IACHR and the Court, in relation to the psychiatric (de)institutionalization of persons with disabilities. Although the pronouncements made by the Inter-American System have not been extensive on the subject, this system—and in particular, the IACHR—has begun to focus on developing standards regarding community integration of persons with disabilities. The first part of this document analyzes the Inter-American system’s treatment of the CRPD given that it is the only instrument that establishes the rights of persons with disabilities to live independently and to be included in the community. The second part deals with the main pronouncements on institutionalization, established by the Court in the case, Ximenes Lopes v. Brazil. Finally, in the third part, the deinstitutionalization of persons with disabilities will be analyzed in light of two precautionary measures granted by the IACHR for patients of psychiatric hospitals in Paraguay and Guatemala.

II. Use of the CRPD to Give Light and Content to the Rights of Persons with Disabilities

It is essential for the organs of Inter-American System to use the CRPD as a guide to interpret and conceptualize the right of a person with a disability to live in the community considering that this treaty is the only international instrument that contemplates this right. Although the CRPD is not a treaty that could be applied by the organs of the Inter-American System, according to Article 29 of the American Convention, both the IACHR and the Court are authorized to use international instruments other than those emanating from the Inter-American System to give light and content to the provisions of the American Convention, and to ensure broader protection for persons under their jurisdiction.[ii] In particular, the CRPD has been used by the Court to ensure the protection of rights from a disability perspective, specifically in the cases: Furlan and relatives v. Argentina (2012); Artavia Murillo et al. (In Vitro Fertilization) v. Costa Rica (2012); and Sandoval Chinchilla v. Guatemala (2016).[iii] In the case of González Lluy et al. v. Ecuador, the Inter-American Court used the social model of disability contemplated in the CRPD to give broader protection to people with HIV who were facing obstacles to access to education.[iv] The first case on disability that the Court analyzed was Ximenes Lopes v. Brazil, a decision issued in July 2006, prior to the adoption of the CRPD.[v] In this regard, the Court used standards contained in various international instruments to determine the special protection of States with respect to persons with disabilities for the enjoyment of their rights.[vi]

III. (De)institutionalization in the Inter-American Human Rights System

A. Inter-American Court of Human Rights

Although the Court has not yet issued any decision related to the right to community integration of persons with disabilities, in Ximenes Lopes, the Court analyzed the special situation of risk faced by persons with mental disabilities in psychiatric institutions, and consequently, the Court determined some of a States’ special duties in this regard.  With regard to persons with disabilities detained in mental health institutions, the Court highlighted the particular vulnerability they face due to their internment, which makes them more susceptible to torture or ill-treatment.[vii] This is mainly a consequence of the high degree of intimacy that characterizes the treatment of psychiatric illnesses, the strong control medical personnel have over their patients, and the imbalance of power between patients and the medical staff.[viii] Considering the situation of special risk, the Court determined that based on the general obligation to ensure the rights to life and humane treatment, States have special duties of protection and prevention in relation to these persons, and that translates into duties to care and to regulate the provision of mental health services.[ix] Ximenes Lopes principally concerns the abuse, negligent medical care, and death of Damião Ximenes Lopes, a person with a mental disability detained in the Casa de Reposo Guararapes—a private psychiatric hospital in Brazil. Despite being admitted “in excellent physical condition [and with] no signs of aggression or external injuries,”[x] Ximenes Lopes’ mother found him in deplorable conditions after just three days in the institution. He was dirty, placed under physical restraint, had bruises and torn clothes and smelled like excrement. He was in pain, shouting, and having difficulty breathing.[xi] Ximenes Lopes’ mother found a doctor to examine her son; without preforming an examination, the clinical director and doctor prescribed Ximenes Lopes medication.[xii] Ximenes Lopes died approximately two hours later, without any medical care at the time of death.[xiii] In considering the facts, the Court observed and analyzed different violations in the context of psychiatric institutionalization, such as medical negligence; deplorable conditions of detention; the use of physical restraints; and ill-treatment. For the first time, the Court established that the State’s responsibility derived from the lack of regulation and supervision of private institutions that provided health services. The Court established violations of the rights enshrined in Articles 4 (right to life), and 5 (personal integrity) of the American Convention, in connection with Article 1.1 (obligation to respect rights). Although the Court to date has not ruled on the deinstitutionalization of persons with disabilities, its considerations on violations of their rights in psychiatric institutions establishes the clear situation of risk these persons face in the general psychiatric contexts of deprivation of liberty. Based on this, it can be inferred that in order to prevent persons with disabilities from being detained in long-term institutions, which due to their nature per se, pose a great risk to the enjoinment of their rights, States must adopt effective measures that allow their independent living in the community as Article 19 of the CRPD establishes.

B. Inter-American Commission on Human Rights

The pronouncements of the Commission have given clarity to the scope of the right of persons with disabilities to live in the community. The main precedents are cases brought to the attention of the Commission through requests of precautionary measures, first, in favor of the patients of the Neuro-psychiatric Hospital, Paraguay; and second, in favor of the patients of the Hospital Federico Mora, Guatemala.[xiv] The precautionary measures are protective mechanisms, initiated upon request of a party by the IACHR initiative, in serious and urgent situations, in order to avoid irreparable harm to a person or persons. Under Article 25(2) of the IACHR Rules of Procedure, “such measures […] shall concern serious and urgent situations presenting a risk of irreparable harm to persons or to the subject matter of a pending petition or case before the organs of the Inter-American system.”[xv] 1. Precautionary Measures for the Patients at the Neuro-psychiatric Hospital, in Paraguay In 2003, the Commission received a precautionary measures request to protect the life and personal integrity of the patients detained in the psychiatric facility in Paraguay. Their internment was egregious and life-threatening because of the physical and sexual abuse, deplorable conditions, and lack of separation between adults and children that prevailed in the institution. The request was also sought to protect Jorge Bernal and Julio César Rotela, youths with intellectual disabilities who had remained in solitary confinement for four years.[xvi] Based on these allegations, the Commission granted precautionary measures on December 27, 2003, and requested Paraguay to adopt actions to protect the life and personal integrity of the patients, such as: a) making medical diagnoses, with special emphasis on women and children; and b) using solitary confinement according to relevant international standards.[xvii] Due to the grant of the precautionary measures and the political will of the State, important advances were adopted. The director of the Hospital was replaced and an audit of the hospital was launched. The patient population was decreased by approximately 33%, the budget for community mental health increased, and community-based services were implemented. Additionally, the two youths, Bernal and Rotela, were released from the hospital to live in the community. Bernal lives with his family and Rotela was transferred to a substitute home in the community—implemented and financed by the government—where he resides with other persons with the same type of disability.[xviii] This case, in addition to preventing irreparable harm to the Neuropsychiatric patients, represents in practice the main precedent of what it means to adopt measures to deinstitutionalize persons with disabilities, through the implementation of community-based services. 2. Precautionary Measures for the Patients at the Federico Mora Hospital, in Guatemala In October 2012, through a precautionary measures request, the Commission learned of the risk to life and integrity faced by patients interned in the only long-term psychiatric institution in Guatemala, the “Federico Mora” National Mental Health Hospital. The Commission was informed of violations, such as physical and sexual abuse by medical and guard staff, as well as by patients themselves, abusive use of isolation rooms, degrading conditions, and negligent medical care. One of the main problems derived from the colocation of regular patients and forensic patients,[xix] which led to difficulties of treatment and abuse.[xx] In November 2012, the IACHR granted precautionary measures (MC-370-12) in favor of these patients and required Guatemala to adopt measures to ensure their lives and personal integrity. In particular, the IACHR asked Guatemala to take the following actions: a) provide adequate medical treatment to the patients; b) ensure separation of children from adults; c) separate forensic patients from the rest of the hospital patients; d) ensure that custody of the forensic patients be provided by unarmed hospital staff; e) restrict the use of solitary confinement in accordance with international standards, and f) prevent physical, psychological and sexual violence.[xxi] IACHR’s grant of MC-370-12 attracted public awareness, drew extensive national and international media coverage, and led to pronouncements by other international human rights bodies. Five years after the granting of the measure MC-370-12, during an on-site visit to Guatemala, the Commission visited the Federico Mora Hospital in August 2017. During its visit, the Commission observed and acknowledged two main changes: improvement of the institution’s infrastructure and separation of hospital patients from those charged with criminal offenses.[xxii] The Commission was also informed of the increased budget allocation the Federico Mora Hospital (from approximately $2-$7 million dollars).[xxiii] The Commission regretted—especially considering the lack of community-based services and the significant increase of the budget—that the State has not created alternatives in the community that enable the social reintegration of patients. This was particularly worrisome considering that most patients continue living at the institution because of the lack of services available in the community.[xxiv] For first time in its history, the Commission called a particular State to guarantee the right of persons with disabilities to live in the community by creating and establishing community-based services. The Commission urged Guatemala to adopt the following measures: a) define an expedite strategy for the deinstitutionalization, with a timeline, sufficient resources and specific evaluation measures; b) ensure the participation of persons with disabilities, directly and through the organizations representing them, in the design and implementation of said strategy; and c) allocate sufficient resources for the development of support services.[xxv]

IV. Conclusion

In general, the cases presented before the Inter-American System are those that have not been resolved in the internal jurisdictions of the respective countries. Frequently, the cases received respond to systemic problems that prevent the effective enjoyment of human rights. The cases analyzed in this article—in relation to Brazil, Guatemala, and Paraguay—are emblematic in making visible the devastating and abusive situation that persons with disabilities in psychiatric institutions face and have historically faced. In this context, the CRPD offers an invaluable tool to influence these rights. In this regard, it is particularly relevant to highlight its provisions before international human rights bodies that are not primarily focused on the development of disability rights, such as the Inter-American Court or the IACHR. This will allow these entities to incorporate within their mandate and decisions, specific protections that will lead to a greater impact regarding the rights of this group. The precautionary measures of Paraguay and Guatemala are currently the main precedents regarding the right of persons with disabilities to live in the community. Despite this, the specific measures requested by the IACHR under this mechanism were not aimed at deinstitutionalization, and—according to the Commission’s perspective—were intended to avoid irreparable harm in serious and urgent situations. However, the advances that Paraguay reached in the framework of the precautionary measures constitute in practice, the clearest example in the Americas of what deinstitutionalization means. With regard to Federico Mora, the standards the Commission established regarding the right of persons with disabilities to live in the community did not come directly from the guidelines established in the precautionary measures, but from the IACHR’s other mechanisms: the preliminary observations and the country report, both based on the on-site visit to Guatemala in August 2017. These mechanisms had as their main source of interpretation the CRPD. Finally, it is important to note that the main developments on the right of persons with disabilities to live in the community within the Inter-American System have been adopted through IACHR mechanisms, different from the system of petitions and cases. This demonstrates the importance of having knowledge of the different options that the Inter-American System provides to fulfill its mandate, and therefore, of creating a comprehensive strategy to advocate for specific rights—in this case, the right of persons with disabilities of living independently and being included in the community. *Note: The opinions expressed in this article are the exclusive responsibility of the author and do not necessarily represent the opinions of the General Secretariat of the Organization of American States, the Organization, or the IACHR. [i] Convention on the Rights of Persons with Disabilities (adopted 13 December 2006, entered into force 3 May 2008) A/ RES/61/106 (CRPD). [ii] According to Article 29.b of the American Convention, no provision of the Convention shall be interpreted as “restricting the enjoyment or exercise of any right or freedom recognized by virtue of the laws of any State Party or by virtue of another convention to which one of the said states is a party”. American Convention on Human Rights (ACHR), adopted 22 November 1969, entered into force 18 July 1978. [iii] I/A Court H.R., Case of Furlan and Family v. Argentina. Preliminary Objections, Merits, Reparations and Costs. Judgment of August 31, 2012. Series C No. 246; Case of Artavia Murillo et al. (“In vitro fertilization”) v. Costa Rica. Preliminary Objections, Merits, Reparations and Costs. Judgment of November 28, 2012. Series C No. 257; and Case of Chinchilla Sandoval et al v. Guatemala. Preliminary Objection, Merits, Reparations and Costs. Judgment of February 29, 2016. Series C No. 312. [iv] I/A Court H.R., Case of Gonzales Lluy et al. v. Ecuador. Preliminary Objections, Merits, Reparations and Costs. Judgment of September 1, 2015. Series C No. 298. [v] For more information about this case, see Galván S. Ximenes Lopes: Decisión emblemática en la protección de los Derechos de las Personas con Discapacidad, ‘National Human Rights Commission, Mexico, October 2015, pp. 67. [vi] These instrument, among others, were the Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities; the United Nations Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care, and the Mental Health Care Law: Ten Basic Principles of the World Health Organization. I/A Court H.R., Case of Ximenes Lopes v. Brazil. Merits, Reparations and Costs. Judgment of July 4, 2006. Series C No. 149, paras. 104, 128 and 131. [vii] Ximenes Lopes v. Brazil at para. 106. [viii] Id. at paras. 107 and 129. [ix] Id. at paras.98, 99, 108, 137, 140 and 146. [x] Id. at para. 112.5. [xi] Id. at para. 112.9. [xii] Id. at para. 112.10. [xiii] Id. at para. 112.11. [xiv] For more information, see Galván S. La Protección de los Derechos de las Personas con Discapacidad en instituciones psiquiátricas, a la luz de las medidas cautelares dictadas por la CIDH [The Protection of the Rights of Persons with Disabilities in psychiatric institutions, in light of the precautionary measures issued by the IACHR], National Human Rights Commission, Mexico, August 2016, pp. 52. [xv] IACHR, Rules of Procedure, approved by the Commission at its 137th regular period of sessions, held from October 28 to November 13, 2009, and modified on September 2nd, 2011 and during the 147th Regular Period of Sessions, held from 8 to 22 March 2013, for entry into force on August 1st, 2013. [xvi] IACHR, Precautionary Measures – Patients of the Neuro-psychiatric Hospital, 2003. [xvii] Id. [xviii] United Nations Documentary, DRI’s Paraguay Advocacy: The story of Jorge and Julio” . [xix] The so-call forensic patients are persons in pretrial detention or serving sentences whose internment is ordered by a judge because they are deemed to have some mental illness. [xx] IACHR, Precautionary Measures, MC 370/12 – 334 Patients of the Federico Mora Hospital, Guatemala, 2012. See also: Disability Rights International, Application for precautionary measures in favor of the 334 people with mental disabilities interned in the Federico Mora Hospital, in Guatemala, October, 2012. [xxi] IACHR, Precautionary Measures, MC 370/12 – 334 Patients of the Federico Mora Hospital, Guatemala, 2012. [xxii] IACHR, Report on the “Situation of Human Rights in Guatemala, OEA/Ser.L/V/II.Doc. 208/17, 31 Decemeber 2017, para. 460. [xxiii] Id. at para. 461. [xxiv] Id. at para. 469. [xxv] Id. at para. 470.