Cruzar el muro

Abstract

A research investigation by the Center for Legal and Social Studies (Centro de Estudios Legales y Sociales, CELS) analyzed the living conditions of 266 people with psychosocial disabilities participating in programs of deinstitutionalization from psychiatric asylums in various jurisdictions of Argentina. This study focused on social inclusion and the enjoyment and exercise of rights contained in the UN Convention on the Rights of Persons with Disabilities (CRPD) and the National Mental Health Law 26.657 (Ley Nacional de Salud Mental, LNSM). The rights analyzed were legal capacity and access to justice, health care, housing, employment, social security, and the preservation of interpersonal relationships. The findings demonstrate that the living conditions of most people in the process of deinstitutionalization are in conflict with the exercise of their rights according to the standards established by the CRPD and the LNSM. Furthermore, public policies adapted to the new disability rights paradigm and coherently coordinated to facilitate sustained deinstitutionalization in dignified conditions are clearly lacking. Therefore, the national and provincial governments should direct their plans, policies and budgetary resources toward increasing the visibility of this population, ensuring their right to decent lives and social inclusion, and fully replacing psychiatric institutions with community-centered mental health programs by 2020, as mandated by the LNSM. Keywords: psychosocial disability, psychiatric hospital, deinstitutionalization, social inclusion, human rights.

CELS’ Trajectory in this Area

The Center for Legal and Social Studies (Centro de Estudios Legales y Sociales, CELS) solidified its commitment to the rights of people with psychosocial disabilities during a research investigation undertaken with Mental Disability Rights International and published in 2008. Titled Ruined Lives: Segregation from Society in Argentina’s Psychiatric Asylums, it was the first study of its kind in the country, and its objective data cast light on the reality lived by the approximately 25,000 persons confined in psychiatric hospitals in Argentina.

Ruined Lives demonstrated that indefinite institutionalization in asylums had become the state’s go-to response for people with psychiatric diagnoses, who historically and structurally have been subjected to social exclusion. The management and living conditions of these asylums resulted in the establishment of practices that violate human rights. These practices were normalized with the passage of time, as occurs in other types of institutions that deprive people of liberty.

Increased public awareness of these practices prompted widespread criticism of psychiatric confinement, which in turn lent support to organizations of service users, relatives, professionals and human rights activists in their demand for a real transformation of the mental health care model, which had already been proposed years before by various national and international entities. As a result, structural changes to the existing regulatory framework have been made over the past seven years. In 2006, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) entered into force and was signed and ratified by Argentina. In 2010, the National Mental Health Law 26.657 (Ley Nacional de Salud Mental, LNSM) was enacted. While implementation was hindered by a delay in the publication of the law’s detailed regulations (a delay that was never given any reasonable official explanation), organizations continued to fight until the regulatory decree was finally issued in 2013.

In addition to providing for an individualized approach that is respectful of rights, the LNSM establishes the goal of fully replacing psychiatric hospitals with community-centered programs by 2020. Thus, in accordance with the LNSM, psychiatric confinement is not only the least preferable option, but moreover a practice and mindset that must disappear altogether to make way for a model that maintains people’s links to society in conditions of equality and promotes their sense of belonging in the community. Given this legal framework, the deinstitutionalization of people incarcerated in psychiatric hospitals should become state policy. In the five years since the LNSM’s enactment, during which time CELS has actively advocated for its full implementation, the need arose to focus on the establishment of deinstitutionalization as public policy to generate the conditions necessary to completely replace psychiatric hospitals with community-centered programs.

Research for Crossing the Threshold

CELS’ commitment to advocating for the rights of people with psychosocial disabilities, coupled with the marked complexity of the deinstitutionalization process, drove the decision to further investigate the social determinants that affect the experience of deinstitutionalization, especially for those who have lived through lengthy institutionalization. A deeper understanding of socioenvironmental factors is needed to be able to identify the specific barriers that stand in the way of this population’s access to rights and its ability to live in society in dignified conditions.

The bulk of the research stemmed from interviews with 266 people in deinstitutionalization programs in the city of Buenos Aires and the provinces of Buenos Aires, Córdoba and Mendoza, as well as with program employees and public officials. The information provided in these interviews was analyzed according to a system of indicators that had been constructed by surveying domestic and international rights standards and organized by various dimensions (i.e., the components that comprise each right, e.g., accessibility, availability, quality, autonomy, community impact, etc.). This analysis led to the identification of specific barriers to social inclusion in the daily lives of people in the process of deinstitutionalization, which indicate specific paths for the design and implementation of public policies.

The major finding of the research is that those interviewed have limited access to all of the rights under study. Those who have managed to attain more dignified living conditions have done so not with the assistance of solid and coherent public policies but rather through their own efficient coordination of personal resources and the support of dedicated relatives and mental health professionals.

As with other structurally discriminated and excluded groups, the substandard living conditions they experience are often justified with facile explanations that they are the inevitable result of some inherent personal attribute. In the case of this population, the cause is commonly attributed to their psychiatric diagnoses. However, we contend that any individual’s living situation should be examined in light of his or her surrounding social context, which often aggravates and prolongs it. No deterioration in these conditions can be understood in isolation from the violence, precariousness and exclusion that an individual has had to endure throughout his or her life, much of it a direct product of state action or acquiescence.

The Rights and their Dimensions

• Legal Capacity and Access to Justice

The exercise of legal capacity is the gateway to the exercise of other rights. However, restrictions on legal capacity in Argentine civil law persist in the new national Civil and Commercial Code. Historically these restrictions have been the primary mechanism for violating rights to legal capacity and access to justice. While a few, limited reforms are envisaged in the new Code – which provides for the specificity of interdictions and periodic sentence review, and mentions support systems – the guardianship model continues to inform the state’s approach to this fundamental right, in a manner contrary to the CRPD.

With respect to access to justice, the findings demonstrate a minimal level of interaction between those interviewed and the judicial authorities involved in their cases, which are mainly related to involuntary hospital admissions and restrictions on legal capacity, often through interdictions that hinder their ability to seek a change in their procedural status or underlying sentences. The judicial system perpetuates institutional, attitudinal and communicational barriers to access by people with psychosocial disabilities.

Review of a civil interdiction sentence is a possible judicial remedy to adjust this restriction on rights to fit an individual’s current situation. In all of the researched jurisdictions, review of interdiction sentences is rare. The few cases in which decisions were subjected to review are found only in the city of Buenos Aires and the province of Buenos Aires. No respondents in Córdoba and Mendoza reported the review of an interdiction sentence. In general, interviewees demonstrate a lack of awareness of the existence of their civil interdictions and of their procedural status.

• Health Care

Access to the right to health care is of particular interest as it constituted the central demand driving the regulatory transformation accomplished by the LNSM. Physical and mental health care is mostly provided by the public sector in all jurisdictions. In general hospitals and/or primary care institutions, mental health care is unavailable or simply denied, so even the public sphere perpetuates the approach of segregation and institutionalization.

It is notable that interviewees who do not receive any psychological or psychiatric care are the second most represented group when sorted by the manner in which they receive mental health care. In some cases, this is because they are no longer in need of this particular type of care. However, in the majority of cases it is due to the prevailing restrictive view of “psychological-psychiatric care.” Often the only mental health care offered is the type of individual counseling and clinical monitoring that is developed in a hospital environment. Therapeutic support adjusted and suited to the different stages traversed by the service user is nonexistent even during the process of deinstitutionalization, when individualized support is of particular relevance.

It is also worth highlighting the low availability of mental health services provided by the federal program “Include Health” (Incluir Salud), to which one can apply upon successfully obtaining a non-contributory disability pension. The data shows that the provision of social security for health coverage is not working effectively or efficiently. This is significant given Include Health’s breadth of resources, which could be directed toward useful services that respond to the specific needs of psychiatric deinstitutionalization, such as tailored therapeutic support.

• Housing

Homelessness is the principal factor in the prolongation of hospitalizations, which is frequently chronic. Protracted hospitalizations progressively deteriorate one’s material capacity to resolve the lack of housing, either due to the loss of ownership, weakened personal relationships, and/or limitations of income and other requisites necessary to sustain one’s own rental.

Many of the deinstitutionalization programs under study offer support for accessing various forms of residential alternatives: halfway houses, group homes, and shared or independent rentals, among others. Although it is valuable that these programs consider the issue of accommodations, they do not obviate the need for a specific, sustainable response that would facilitate access to dignified housing.

The differences among jurisdictions demonstrate the absence of a specific public policy on this issue, even at the federal level. There are no residential alternatives associated with the Córdoba program. Thus, in order for a service user to begin the deinstitutionalization process and leave the hospital, he or she must already have access to housing as a precondition. In the case of the Mendoza program, the only residences provided by the program are private group “homes” to which the service users are discharged. The hospital budget finances the accommodation of persons in these homes. In the city of Buenos Aires and the province of Buenos Aires, there are more diverse types of residences, such as houses that are leased jointly by several people, which serve best to enable an autonomous environment. The option of resorting to rentals in hotels and boardinghouses generates the greatest instability.

• Employment

The absence of paid employment is the second principal factor that limits the deinstitutionalization process, because without regular and sufficient income it is impossible to satisfy the basic daily needs of life outside the hospital. In hospitals and deinstitutionalization programs, the issue of work is generally approached in the form of “sheltered workshops”.

Although the workshops studied vary in terms of productivity and sustainability, such an approach generally does not result in the job training necessary for reintegration into a regular, remunerated occupation, and instead often falls within the questionable framework of “work therapy.” The tasks carried out are not remunerated with an income but rather a small financial “incentive.” Such payment is not regular, equitable, progressive or inalienable, as a salary should be, and is sustained only by the institution’s own rationale. Furthermore, the labor in sheltered workshops is regulated by a specific code that is different from national labor regulations and provides a far lower standard of protection of rights.

In all jurisdictions, the majority of those interviewed are unemployed. This limits the possible impact of deinstitutionalization and keeps this population dependent on hospitals, even for basic needs such as food. The majority of the few people who reported having paid jobs perform unskilled service work in the informal labor market. This goes hand in hand with the limited impact of the 4 percent hiring quotas for people with disabilities in the public sector, where people with psychosocial disabilities are particularly discriminated against.

• Social Security

Since a lack of income is a structural problem for those who have been deinstitutionalized or are in the deinstitutionalization process, the only state response aimed at addressing the need for a regular income lies within the sphere of social security. The requirement for access to the provisions of the federal social security system in matters of disability is the Unique Certificate of Disability (Certificado Único de Discapacidad, CUD). Obtaining a CUD is the first step to access existing disability benefits. With a CUD one can take various other steps to obtain financial coverage of health services, transportation, etc. and be protected by the provisions of Law 24.901, which sets forth basic disability benefits.

In the city of Buenos Aires and the province of Buenos Aires, the majority of those interviewed have a CUD, and the percentage of people who do not know if they have one is minimal. A few have the paperwork in process, and some reported they were not able to obtain one. In Córdoba and Mendoza the situation is much more varied since a higher proportion of people do not have a CUD or have paperwork in process, even though the procedure is simple and commonplace for people with disabilities. It is necessary to review the bureaucratic processes in each jurisdiction to determine whether there might be a factor that differentially affects access to the CUD in the various provinces.

A major barrier related to employment is the incompatibility between non-contributory disability pensions and salaried work. This incompatibility demonstrates the lack of attention to the different barriers to becoming and staying employed and forces the person to choose between obtaining a job as a salaried employee or keeping his or her disability pension. An additional complication arises when individuals decide to pursue employment and then lose their job, since they must once again begin the process of applying for the disability pension as if they had never been beneficiaries.

• Interpersonal Relationships

Although this category was not considered as an indicator during the initial methodological stage, it emerged from the important contextual information provided by those interviewed as they shared their experiences. The majority of those interviewed had lived through long periods of institutionalization. Chronic institutionalization, used for predominantly social reasons, generates progressive deterioration and loss of interpersonal relationships with family and friends, who could help ease the deinstitutionalization process. The skills, attitudes and abilities necessary for life in the community also progressively deteriorate as a result of institutionalization’s own iatrogenesis.

The link between the prolongation of institutionalization and the loss of important interpersonal relationships is direct. Almost all of those interviewed had been institutionalized for periods of more than one year; the very existence of people with institutionalizations that lasted from 10 to 65 years demonstrates that institutionalizations are related to factors other than recovery of one’s health at a critical moment and, in fact, end up being utilized as a response to social problems. Lost ties with children are especially deeply felt. It is common that such contact is interrupted by institutionalization, and is often never resumed.

Regional Contexts

The distribution of health care responsibilities among the nation, the provinces and the federal capital causes uneven advances and shortcomings in different jurisdictions. Overall, the city of Buenos Aires and the provinces of Buenos Aires, Córdoba and Mendoza all have in common delays in the creation and operation of the local Mental Health Review Bodies, whose function is to closely monitor implementation of the LNSM. These delays limit the possibilities of denouncing living conditions and demanding action through this mechanism.

The budgetary redistribution in these jurisdictions has shortcomings similar to those seen at the federal level, in that 10 percent of the health care budget has not yet been allotted to mental health care, as is required by the LNSM. For example, in the city of Buenos Aires, 80 percent of the budget for mental health care continues to be directed toward financing the four largest psychiatric hospitals. In all jurisdictions, mental health policy plans – where they exist – are not sufficiently clear on the link between the creation of community-focused services and the need for them to gradually replace psychiatric hospitals and become the preferred institutions for mental health care. As a result, both processes tend to be limited to disjointed, isolated actions.

Mental Health and Disability on the Current Human Rights Agenda

The recognition of psychosocial disabilities as part of national and international human rights agendas has evolved to address not only the prevention of human rights violations in psychiatric confinement, but also other systematic policies of segregation, exclusion and incapacitation that are carried out by the state or with its acquiescence.

The problematization of the violence deployed in contexts of psychiatric confinement can be considered part of an especially strong development in Argentina, where a historical and logical continuity has been established between the state violence unleashed during the last civil-military dictatorship (1976-1983) and other violence found in democracy. Violence is continuously effected through current state practices in patterns that vary in how systematic they are (prisons, police brutality), and are not directed at particular political groups but are geared instead toward marginalized and stigmatized social sectors (those living in villas or shantytowns, people involved in the criminal justice system, youth).

The asylum, used as a tool to normalize particular types of institutional violence, has the same function as all other total institutions of reproducing a certain social order in which one finds the “madman” – seen as a disruptive, unproductive and potentially dangerous subject – to be segregated.

From a more contextual perspective, as with other vulnerable social groups (children, women, migrants, indigenous peoples), the state maintains, by action or omission, procedures and rationales in its political and institutional regulatory framework that become discriminatory over time, thus obstructing full social inclusion and participation.

In the particular case of people with psychosocial disabilities, faced with exclusion from enjoying other social rights, the state historically specified institutionalization as its preferred policy, with all the culpability for endangerment and rights violations that asylums entail. Thus the state is responsible for the damage and deterioration produced by institutionalization, and should reverse, repair and guarantee the non-recurrence of such violations. In addition, given this positive interpretation of the state’s obligation, it becomes apparent that the state has the duty to take effective measures to overcome the aforementioned structural gaps and ensure an equal level of protection of rights for everyone.

Given this analytical framework, which considers institutionalization in asylums as a broad and structural human rights violation, we maintain that deinstitutionalization is not just one health care policy action among other possibilities, but rather the fundamental means for the permanent replacement of psychiatric hospitals with community-centered programs as mandated by the LNSM. Just as deinstitutionalization cannot be limited to medical discharge, neither can it become a tool for compulsory expulsion, nor a mechanism of trans-institutionalization to equivalent spaces. As a duty of the state, it must be executed in a manner consistent with its other regulatory provisions that guarantee rights.

Therefore, it is fundamental that we propose our own concept of deinstitutionalization that puts the discussion on common ground and cuts through elements that historically have prompted confusion between the practice of deinstitutionalization and that of compulsory expulsion or trans-institutionalization, which are deeply contrary to the regulatory framework and radically different from true deinstitutionalization, as a process of devictimization and restoration of rights.

The work manifested in Crossing the Threshold allows us to propose that to truly deinstitutionalize, the process must not only restore rights but also reverse the damage caused by chronic institutionalization. Returning to the community also involves reinstatement of the enjoyment of rights and a free, dignified life in the community; all of this is in the hands of a state that in the discharge of its obligations must provide the material and human conditions necessary for the deinstitutionalization process to develop in a suitable and sustainable manner.

We reaffirm the need to establish a specific work plan for the decent and sustainable deinstitutionalization of people who have experienced long periods of institutionalization, because they constitute a population that, in the absence of alternatives, depends exclusively on psychiatric hospitals as a place of indefinite lodging. This work plan, far from limiting itself to the health care field, must have the active participation of government bodies with authority to protect economic and social rights and a relevant role in the justice system.

To comply with its obligations, the state must advance on two fronts: creating the material conditions for people who have been chronically institutionalized so they can be deinstitutionalized in a dignified manner with the assistance they need, and transforming the mental health care system so that people can be served in the community without entering the asylum circuit.

The design and implementation of harmoniously coordinated cross-sector public policies will enable the fulfillment of the model established by the LNSM, preventing recurrence of the violations that have already been experienced by people who now deserve all the support necessary to cross the threshold and leave the asylum. We at CELS hope that Crossing the Threshold establishes itself as a working tool for this purpose.