CC BY
12DOI: 10.46991/BYSU:F/2022.13.2.061
DEINSTITUTIONALIZATION IN THE FIELD OF MENTAL HEALTH IN ARMENIA:
CONTEMPORARY ISSUES Gohar Khachatryan https://orcid.org/0000-0002-0067-3470
Ph.D. Student at the Department of Social Work and Social Technologies, Yerevan State University; Mental Health Program Coordinator at the "Institute of Public Policy" NGO; Advocacy Specialist and Supervisor of home care program for people with mental health problems in Armenia at the "Mission Armenia" NGO. Email: goharaknkhachatryan@gmail.com
Abstract. This article presents the problems of deinstitutionalization in the field of mental health in the Republic of Armenia based on the analysis of international documents defining the rights ofpersons with mental health problems. This article comprehensively discusses the way of deinstitutionalization in the field of mental health in the Republic of Armenia, the transformations that have taken place in the process, the current situation, the problems, the ways of overcoming them, filling the existing gap in this respect. The article substantiates the need for deinstitutionalization as a guarantee for the realization of the right to independent living and inclusion of people with mental health problems in the community in the Republic of Armenia. At the same time, the existing problems in Armenia in this regard are presented, both at the policy and practical levels. The author emphasizes the development of a comprehensive research-based document and a roadmap for the process as a way of overcoming identified issues. Keywords: Mental health, deinstitutionalization, independent living, community involvement, Armenia.
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ДЕИНСТИТУЦИОНАЛИЗАЦИЯ В СФЕРЕ ПСИХИЧЕСКОГО ЗДОРОВЬЯ В АРМЕНИИ: СОВРЕМЕННЫЕ ПРОБЛЕМЫ
Гоар Хачатрян
аспирант кафедры социальной работы и социальных технологий ЕГУ, координатор программ психического здоровья в ОО «Институт общественной политики», специалист по адвокации, куратор программы ухода на дому для людей с проблемами психического здоровья в Армении в ОО "Миссия Армения"
Аннотация. В статье, на основе анализа международных документов, определяющих права лиц с проблемами психического здоровья, всесторонне рассматривается и обосновывается процесс деинституционализации в сфере психического здоровья в Армении, описываются произошедшие в стране
Journal of Sociology: Bulletin of Yerevan University, Vol. 13 (2), Dec 2022, pp. 061-068 Received: 29.09.2022
Revised: 24.10.2022 Accepted: 05.12.2022
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
© The Author(s) 2022
преобразования, текущая ситуация, проблемы, пути их преодоления, предлагаются возможности восполнения существующего пробела в этом вопросе. Обосновывается необходимость деинституционализации как гарантии реализации права на независимую жизнь и вовлеченность людей с проблемами психического здоровья в общество. Представлены существующие в этом вопросе проблемы на политическом, а также на практическом уровне. Автор предлагает подходы к разработке всеобъемлющего исследовательского документа, а также дорожную карту осуществления данного процесса и преодоления выявленных проблем.
Ключевые слова: психическое здоровье, деинституционализация, самостоятельная жизнь, вовлеченность в местное сообщество, Армения
Introduction
The UN Convention on the Rights of Persons with Disabilities (hereinafter referred to as the Convention), among other rights of persons with mental health problems, defines the right of living independently and being included in the community (Article 19).
According to the Convention (General comment no. 5, 2017) independent living is the creation of opportunities by the state for people with mental health problems to have control over their lives by making decisions and choices, that is, they are not deprived of the opportunity to make choices and control their daily activities and lifestyle. Inclusion in the community means people with mental health problems living a full social life, being involved and participating in its different areas. In addition, it implies the availability of services to the public on one hand, and support services for people with mental health problems on the other.
It is problematic that although the Republic of Armenia has ratified the Convention since 2010 committing to take steps to ensure the realization of this right, a large number of people with mental health problems in the Republic of Armenia are currently in psychiatric and care institutions. The Human Rights Defender of the Republic of Armenia regularly presents the problems existing in those institutions, including overcrowding, isolation from the community, the imposed regime, the existence of an institutional culture, the lack of personal space, etc (Annual report on the activities, 2019).
The problems of psychiatric and care institutions have raised many issues in international practice as well, especially during the deinstitutionalization movement that began in the 1950s. Deinstitutionalization in the field of mental health is the replacement of psychiatric and care institutions with alternatives that guarantee the right of persons with mental health problems of living independently and being included in the community (From institutions to community..., 2018).
Deinstitutionalization is a complex, long-term process that requires a systematic approach; radical changes from the ideology underlying sectoral policies to the range of services provided, from regulatory procedures to monitoring mechanisms, from public attitudes to professional approaches.
Although the deinstitutionalization process in the field of mental health in Armenia started in 2013 with the Concept of "Provision of alternative care and social services for people with mental health problems", after which several legal regulations also addressed this process, the current situation, problems and perspectives of deinstitutionalization in the field of mental health in Armenia are not conceptually presented in any document.
This Article is aimed at filling the gap and presenting the concept of deinstitutionalization, the process of deinstitutionalization in the field of mental health in the Republic of Armenia, the problems and perspectives through analyzing existing documents.
Historical overview
The ways in which different societies respond to issues of people with mental health problems have changed over time, and those approaches can generally be divided into the following stages:
In the early Middle Ages, the problem of mental health was considered a result of a sin committed, a punishment by supernatural forces in response to a behavior differencing from that of the majority. People with mental health problems were stigmatized by society and family. It was on this basis that societies isolated them and used various spells and tricks to "free them from the supernatural evil forces", the most common of which was "forgiveness of sins" by whipping (Miller, 2019).
From the 17th century onwards, people with mental health problems in Europe were "kept" in prisons, together with the people who appeared on the street and committed crimes, mostly chained to the walls of prisons, behaving in a barbaric and inhuman ways (World Health Organization, 1962).
In the 18th century, as a result of a movement against "keeping" people with mental health problems in prisons and using chains and shackles on them, many psychiatric and care institutions were established in the United States and in a number of European countries. As a result, people with mental health problems
were transferred from prisons to psychiatric and care institutions, and prison cells were replaced by wards. Advocates of these changes were taking steps to provide people in those facilities with spacious, ventilated wards, opportunities to exercise, read, and interact with others (Trent, 2017).
Although psychiatric and care institutions were created as an alternative to prisons, they posed new challenges in the 19th century.
Challenges posed by psychiatric and care institutions
Psychiatric and care facilities, as institutions, integrate norms and practices formed around psychiatric care. According to various studies, psychiatric institutions are already problematic in nature, as they have a negative impact on the behavior and quality of life of the people living there. Being in these institutions for some time, individuals "institutionalize" their behavior, which is reflected in the lack of initiative, indifference, submissive behavior, dependence on the institution. This phenomenon is interpreted by sociologist E. Goffman as a result of norms having a "ritual function" in the institution, through which the behavior of individuals is controlled and regularized (Goffman, 1961).
People living in institutions lose control of their lives because they are even alienated from the ability to make decisions underlying various daily activities, such as who to share their space with, when to eat, when to sleep, etc (Stiker, 2017). Thus, over time, psychiatric and care institutions are "exhausted", meaning that they not only fail to achieve their intended purpose, but also create new ones, including overcrowding, taking advantage of a dependent state arising from persons mental health status, recorded rates of abuse and violence against them, etc.
Existing institutional theory highlights different degrees of deinstitutionalization, from complete abandonment of practices to partial erosion of psychiatric institutions which is interpreted for internal and external reasons. Internal cause refers to the organizational structure of psychiatric institutions where, over time, the norms that control the behavior of those who are there no longer become applicable and (or) create new problems. The external cause is related to events outside the psychiatric and care institution. These may include movements aimed at changing mental health policies or developing new agendas.
Thereby, when psychiatric institutions are no longer able to address the problem they face, that is responding to the needs of people with mental health problems, they are closed down (Chaudhry, Rubery, 2019).
It was in order to raise these issues and emphasize the need to create alternatives to psychiatric institutions, that the deinstitutionalization movement began in the United States in 1955 and gradually spread throughout Europe.
Deinstitutionalization of psychiatric and care institutions
The aim of the deinstitutionalization movement is, on one hand, to close psychiatric and care institutions, returning persons with mental health problems to their families or providing independent residence, and, on the other hand, to prevent other people from entering these institutions (Torrey, 1998).
What is deinstitutionalization? It is a process of changing the living conditions of people with mental health problems, which involves the transition from institutional or other isolating systems to community-based services based on an assessment of persons' individual abilities and preferences (From institutions to community..., 2018).
It should be noted that transformations of services provided to people with mental health problems are largely studied in the context of systemic theory, as deinstitutionalization implies radical changes in different systems of protection for people with mental health problems or in different societal settings and values. At the same time, all these changes emphasize the inclusion of people with mental health problems in the community, and the key is to overcome the stereotypes in the society. The latter is a complex, time-consuming path that envisages joint changes in various fields (Novella, 2010).
Prerequisites for effective deinstitutionalization
According to the study of international practice, it is necessary to take complex preparatory steps before the deinstitutionalization of psychiatric and care institutions, otherwise there is a high risk of the process failing and facing new challenges.
In different countries, in the early stages of deinstitutionalization, the inclusion of people out of psychiatric and care institutions in the community was endangered, and some of them became homeless (or) imprisoned as several important factors were overlooked. In some US states, community-based rehabilitation services were scarce (Commentary, 2019), in Canada, the importance of including people with mental health issues in community programs and working with existing stereotypes has been neglected (Spagnolo, 2014), in the Netherlands, few resources have been allocated to assess and monitor the effectiveness of the
deinstitutionalisation coordination process (Pijl, Sytema, 2004), etc.
A study of international practice shows that in the process of deinstitutionalization in the field of mental health, there is a high risk of unemployment for those who have left institutions, not finding a job, and being rejected by the community. On this basis, states should combine the closure of institutions with the development of inclusion programs in communities hosting people leaving institutions, with the creation of employment opportunities, associations for the protection of their rights, and the introduction of programs and services that promote the autonomy of individuals.
The experience of Italy (Italy is the first European country to launch deinstitutionalization process in the field of mental health) (Chaudhry, Rubery, 2019). Great Britain and the Netherlands in the process of deinstitutionalization is advanced in terms of the programs promoting the socio-economic participation of people out of psychiatric and care institutions (Pijl, Sytema, 2004).
The European Union Agency for Fundamental Rights, studying the process of deinstitutionalization in the field of mental health in a number of countries (Bulgaria, Finland, Ireland, Italy, Slovakia), offers the main provisions of effective deinstitutionalization.
• Design and implement deinstitutionalization, ensuring the participation of state and local institutions, people with mental health problems and others important to them throughout the whole process. Besides, to promote active cooperation among all participants, to create and develop effective cooperation platforms and mechanisms.
• Prepare participants for the changes resulting from deinstitutionalization.
• Carry out large-scale work to change negative stereotypes around people with mental health problems.
• To develop independent life skills of people who have left the psychiatric and care institution, to provide them with opportunities for self-realization, employment, inclusion in the community.
• Consider the process of deinstitutionalization as cross-sectoral, considering not only a set of changes taking place in the social or health field, but also in education, employment, culture and other areas.
• Develop the skills of professionals in both mental health and related fields, with the aim of organizing capacity building meetings, trainings, and develop supportive tools.
• Develop and implement flexible mechanisms for evaluating and monitoring the deinstitutionalization process and the performance of alternative service providers (From institutions to community, 2018).
Deinstitutionalization within the scope of the Convention
Article 1 of the Universal Declaration of Human Rights states that all human beings are born free and equal in dignity and rights.
Living in and being included in the community is a precondition for everyone to exercise their fundamental rights and freedoms. In the general comments of Article 19, the Committee on the Rights of Persons with Disabilities (hereinafter referred to as the Committee) states that both independent living and community involvement apply to living outside of all institutions. For centuries, however, people with mental health problems have been isolated from society, considered incapable of making various decisions, 'kept in institutions' (Wezeman, 2021).
According to the Committee (2017), states often view institutions as the only solution in cases where they consider personal services to be "too expensive" for people with mental health problems, or when they are "unable" to live outside of institutionalized facilitiess. Such a reasoning contradicts Article 19, according to which the right to live independently and to be included in the community applies to all persons with disabilities, regardless of their level of mental or emotional capacity, scope of support needed.
The provision of Article 19 requires States to exclude the accommodation of persons in institutions and to ensure the return of persons in institutions to the community.
It should be noted that the deinstitutionalization of psychiatric and care institutions in the field of mental health is a complex process. Both the Committee (2021) and the World Health Organization, as well as various international organizations for the protection of the rights of persons with disabilities and other stakeholders, have repeatedly urged countries to adopt strategies that clearly set out the vision, guidelines, timelines, and responsibilities of the respective bodies and generate the will to make changes.
Deinstitutionalization may require complex changes, including in the areas of health, social rehabilitation, support services, education, and employment. A systematic approach by states is key to the success of deinstitutionalization.
The need for deinstitutionalization of psychiatric and care institutions in the field of mental health in Armenia
According to the Ministry of Labor and Social Affairs of the Republic of Armenia, as of January 1, 2020, 23,468 people with mental related disabilities live in Armenia.
Both during the Soviet era and today, the services offered to people with mental health problems in Armenia are mostly provided in psychiatric and care institutions (Database of mental health and care..., 2019).
According to the Ministry of Labor and Social Affairs of the Republic of Armenia, currently, about 1,000 people are in psychiatric institutions, while most of them do not need intensive medical care. However, because they have no other place to live, they found themselves in those institutions and have remained there for years. As for the elderly with mental health problems, as of 2019, 568 out of 851 people with disabilities in day care centers for the elderly had mental health problems. In addition, according to the data from 2022, 394 people with mental health problems need round-the-clock care services, and are registered in the waiting list for being transferred to psychiatric care institutions. The existence of these institutions deprives people with mental health problems of, among other things, the right to live independently and to be included in the community. Meanwhile, by ratifying the Optional Protocol to the Convention, the Republic of Armenia is committed to ensuring and promoting the full realization of the human rights and fundamental freedoms of persons with mental health problems, without discrimination on the grounds of disability (Article 4).
In the documents regulating the field of mental health in the Republic of Armenia, deinstitutionalization was first addressed in the Concept on "Provision of alternative care and social services for people with mental health problems" adopted in 2013 (hereinafter referred to as the Concept) and in the program of Concept Implementation Measures 2013-2017 (hereinafter referred to as the Program).
The Concept defines deinstitutionalization as "a crucial stage in the transformation of mental health services, during which large psychiatric institutions are gradually replaced by alternative services, such as short-term care homes, community day care centers, and other services."
The Concept presents the existing problems in the field of mental health, as well as emphasizes the need to fight the discrimination against people with mental health problems, create alternatives to institutions.
The Concept can be considered the starting point for deinstitutionalization in the field of mental health, even though there are several problems: the definitions of different concepts (including "deinstitutionalization") are not comprehensive, often problematic and not sensitive, the experience of the Republic of Armenia within the scope of this topic is superficial and segmental.
Another cornerstone document, the 2014-2019 Mental Health Care and Improvement Strategy in the Republic of Armenia and the List of Measures to Ensure the Implementation of the Strategy (hereinafter referred to as the Strategy) underlines the importance to move from one institutional system of mental health care to another, where the main emphasis is on 'providing support' at the community level.
It should be noted that although both the Concept and the Strategy emphasize the need to create alternatives to institutions in the Republic of Armenia, there are several issues connected with them, one being the contradiction between the concepts used in the two documents. This shows that the Concept was developed by the Ministry of Labor and Social Affairs of the Republic of Armenia, and the Strategy was developed by the Ministry of Health.
This proves that all actions related to deinstitutionalization need to be designed, defined, and implemented on a common ideological basis, with a sensitive, human rights-based terminology, applicable by various responsible agencies, regardless of sectoral direction.
The Concept and Strategy suggest alternative service models, such as long-term care homes, temporary dormitories, and day care centers of various profiles, supporting employment services, supporting accommodations, home-clubs, and day care homes. Some of these models were planned to be introduced in the Republic of Armenia (implemented by the Ministry of Labor and Social Affairs of the Republic of Armenia), in particular:
• Establish 24-hour care homes in 2 communities for up to 30 people.
• Establish community day care centers in 3 communities for a maximum of 30-50 people.
• Establish day care centers for children and adolescents in at least 2 communities for 30-50 people.
• Organize 10 supporting apartments for 3-10 people.
• Establish 1 round-the-clock care center and 1 day care center for the elderly.
According to the report of the Ministry of Labor and Social Affairs of the Republic of Armenia on the implementation of this measure the above-mentioned actions were not carried out by the responsible agencies on the grounds of "insufficient financial resources". Only in 2016, Spitak Care House was established with the support of Open Society Foundations-Armenia.In addition, the Dzorak Mental Health Care Center (with an adjacent day care center) was established during this period, with the aim of "unloading the waiting list of people with mental health problems in need of round-the-clock services." At that time, attempts were often made to present the Dzorak Center as an alternative to institutions, but it can not be considered an alternative, as it has the same structure as other institutions operating in Armenia.
Then, in 2017, the action plan for 2017-2019 arising from the National Strategy for the Protection of Human Rights was adopted, which envisages the introduction of alternative models of care and social services for people with mental health problems in the first quarter of 2019, one in Yerevan, the other in a region. The report of the Ministry of Labor and Social Affairs of the Republic of Armenia on the implementation of this measure states that the Spitak Care Home, established in 2016, will be funded by the Ministry starting from January, 2018.
It is problematic that the RA Ministry of Labor and Social Affairs has not introduced an alternative model, instead, it is planned to finance the already existing structure, presenting it as a measure.
The above-mentioned shows that including deinstitutionalization actions in sectoral documents is not yet a guarantee of its implementation, as the justification for insufficient financial resources is an "eternal reasoning" by the responsible agencies. Given this risk, it is important to take steps to find the financial resources needed to create and develop new services.
"The 2017-2021 social inclusion program for people with disabilities and the list of measures to ensure the implementation of the program" adopted in 2017 highlights the implementation of changes directed to the inclusion in the society, the elimination of various barriers, ensuring employment and non-discriminatory environment. On the basis of this program, a program of social inclusion of persons with disabilities and a list of measures are defined each year, in particular, the 2019 program of social inclusion of persons with disabilities and the list of measures. By the same logic, similar programs are developed for 2020, 2021, 2022.
The 2019 program envisages the expansion of services in the field of mental health, including the provision of care and social services for people with mental health problems at home. In addition, it highlights the responsibility of the Government of the Republic of Armenia to take steps to introduce new models of community-based services for people with mental health problems, to develop the necessary legal basis for them, to take steps to strengthen the existing potential and resources.
In the 2020 plan, deinstitutionalization is seen as a guideline for people with mental health problems to live independently and be included in the community. To achieve this, it is recommended to invest in and develop small community homes, home care, and personal assistance services.
It should be noted that although the above-mentioned documents address deinstitutionalization and the introduction of alternative services, in practice there have been no significant changes in terms of the number of alternative services introduced or the number of beneficiaries of those services.
In its final observations on the initial report on the implementation of the Convention by the Republic of Armenia (paragraph 32), the Committee expressed its concern at the slow progress of deinstitutionalization in the country, as well as the limited services provided for independent living in the community. The Committee instructed to speed up the process of deinstitutionalization, in particular, to initiate appropriate legal measures, to allocate resources for the development of community services. The Committee notes that although progress has been made in the implementation of Article 19 in the past decade in the Republic of Armenia, the full implementation of the objectives of the Article continues to be hampered by obstacles, including:
• insufficient social assistance and protection mechanisms to live independently in the community,
• lack of deinstitutionalization strategies and plans, as well as ongoing investments in institutional care,
• negative attitudes, stereotypes that hinder the inclusion of people with disabilities in the community,
• misconceptions about the right to live independently in the community,
• insufficient monitoring mechanisms for compliance with Article 19 of the Convention, etc.
These observations are also mentioned in the draft decision of the Government of the Republic of Armenia "On approving the program of measures for the transformation of care services for people with
disabilities for 2020-2024 and the program implementation schedule". The project envisages the introduction of alternative services for 851 people living in day care institutions, as well as preventing the entry of people with disabilities into day care institutions. To achieve this goal, it is proposed to create community-based services: small group homes, sheltered housing, home care, personal assistance services. It is also proposed to dissolve, reorganize day care facilities, raise public awareness, and train specialists to work with people with mental health problems. In addition, a monitoring is planned for the processes of policy development, introduction and implementation of services, specialist trainings, and awareness-raising campaigns. It is noteworthy that this draft emphasizes the importance of public awareness, development of professional competencies, introduction of monitoring mechanisms, as well as the model of protected housing, which was not mentioned in the previously developed documents. However, this project still remains on the paper.
Based on the results of the monitoring of the National Preventive Mechanism in 2021, the Human Rights Defender reaffirms his position that although the Government has approved the prospect of deinstitutionalization in the field of mental health and transition to community-based services, some work has been done in separate cases but no active steps have been taken in this direction. In addition, sectoral issues are not regulated within the framework of a common policy, regardless of departmental subordination.
The Human Rights Defender (2022) proposes, among other steps, to develop strategic documents for deinstitutionalization in the field of mental health, transition to alternative services, taking into account international standards, expand the scope of existing alternative services and take clear, effective steps to ensure their implementation.
In conclusion, it becomes clear that although the launch of deinstitutionalization in the field of mental health in the Republic of Armenia has been outlined by various legal regulations, the document does not present the concept of deinstitutionalization and the roadmap of the process. As a result, the ideology, values and principles at the core of the process, which will be applicable to all stakeholders regardless of the sector and departmental subordination, are not clearly defined.
In addition, deinstitutionalization is a process that implies systemic change, which, however, is more segmental in Armenia. According to the study of international practice, it requires parallel changes in various fields (social, health, education, employment, culture, etc.), while in the Republic of Armenia, the main departments involved in the process are the department of health and the department of social services. At the same time, the actions carried out by the two agencies are not coordinated and do not have a common ideological basis, they often contradict each other.
The information on the topic, the ongoing discussions, increasingly acknowledge the inevitability of deinstitutionalisation, but are less clear in terms of the mechanisms that replace institutionalization on human rights-based approaches. In addition, the coverage of community-based services in Armenia is insufficient, while the state continues to invest in the maintenance of psychiatric and care institutions. Moreover, the measures taken by the state to introduce the concept of deinstitutionalization, to overcome stereotypes in society, to increase the sensitivity of specialists in the field of mental health and related fields are insufficient, while international experience suggests that these are preconditions for successful deinstitutionalization.
Mental health policy is not based on research or facts. It is noticeable in most of the studied documents that the RA experience is presented superficially, without substantiation, often repeating the content of the documents developed earlier.
Thus, in the process of deinstitutionalization of the mental health sector in Armenia, there are a number of problems, the successful solutions of which require a unified, systematic, comprehensive, multi-sectoral approach at both the policy-making and implementation levels.
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