Fostering inclusion of persons with psychosocial disabilities in Nepal
On January 13, 2014 and January 15-16, 2014, Koshish–National Mental Health Self Help Organization, the National Federation of the Disabled Nepal, Forum for the Protection of Public Interest (Pro Public), and the International Network on Economic, Social and Cultural Rights organized two workshops on the rights of persons with psychosocial disabilities in Kathmandu, Nepal.
Bringing together government officials from multiple ministries and civil society leaders, the January 13 workshop focused on implementation and enforcement strategies regarding an important 2008 Nepali Supreme Court decision affecting persons with psychosocial disabilities. That decision nullified as ultra vires the practice, previously authorized by law, of allowing the Chief District Officer to indefinitely jail persons with actual or perceived psychosocial disabilities, purportedly for “treatment” or “security” purposes. Citing the Nepali Constitution’s guarantees of substantive equality, health, a dignified life, and positive protections for the rights of persons with disabilities, the decision declared said laws to be null and void and ordered the release to treatment centers of all persons currently jailed with mental illness. It affirmed that having a disability can never be an offense, and that persons with psychosocial disabilities are entitled to all the fundamental rights and personal freedoms guaranteed in both the Nepali Constitution and international human rights treaties to which Nepal is party. In this latter regard, it cited specifically to Article 12 of the ICESCR, which obligates Nepal and other states parties to provide adequate and appropriate health services to all their inhabitants.
Matrika Devkota (Koshishi)
The January 13 workshop was organized with two aims. The first was to hear from government what had been done in the preceding five years to implement the Nepali Supreme Court’s decision. That decision had directed the government to take three mandatory sets of positive measures, in addition to ending the arbitrary practice of warehousing persons with psychosocial disabilities in jail: (1) to enact a law to protect the rights of persons with mental disabilities; (2) to arrange health services and other necessary measures for such persons; and (3) to submit a report to the Court within 9 months that includes the number of persons with mental illness in Nepal, how many hospitals, doctors, health workers and hospital beds there are for the treatment of such persons, and what plans exist for their treatment. This latter directive was deemed necessary given the overwhelming dearth of information available in Nepal on persons with psychosocial disabilities and their needs, a failure that has contributed directly to the government’s long-term neglect of such persons in policymaking and service provision. The same lack of information, it bears noting, led the Court to issue a more problematic short-term directive with respect to the 27 wrongfully incarcerated persons identified in the litigation: “if there are no treatment centers” in Nepal to which they can be sent, the Court held, “it is ordered that competent mental health doctors be sent to the prison for their treatment”.
As the government’s workshop presentations made clear, it is this latter directive exclusively that has been implemented to date, the Prison Management Department having committed to the placement of psychiatric doctors within the prison system. No efforts have been made to ensure that persons with psychosocial disabilities can receive services and supports in the community and through the general public health system, taking the criminal justice system out of the equation. In light of this massive failure, the workshop was organized with a second primary aim: to devise strategies and concrete commitments on the part of distinct Nepali stakeholders for moving the implementation process forward.
Matrika Devkota, Founder of Koshish, set the tone of the event by stressing the need of community-based health programs that focused on the inclusion of persons with psychosocial disabilities in society. Updates on the implementation process were given, in turn, by Mr. Lal Prasad Aryal, Director of the Judicial Enforcement Directorate of the Supreme Court, Mr. Shambhu Koirala, Director General of the Department of Prison Management, Mr. Rabindra Acharya, Section Officer of the Ministry of Women, Children and Social Welfare, and by Prakash Mani Sharma, Founder of ProPublic and litigator at the case. Mr. Surya Bamsa Sharma Kanel, Under Secretary of the Ministry of Home Affairs, presented the summary report of the fact finding mission carried out the previous week highlighting the precarious situation of persons with psychosocial disabilities and failure in implementing the Supreme Court Judgment. Former Supreme Court Judge Balaram K.C., who wrote the 2008 decision, chaired the session and provided comments on the need for better implementation and follow-up.
Tara J. Melish, an international human rights litigator and advocate with practical experience working on similar implementation and follow-up processes in comparator countries, including Guatemala and Paraguay, was also on hand to offer comparative insight into the concrete steps, strategies, and frameworks that Nepal might consider adopting in moving its own implementation process forward.
These comparative implementation experiences, Melish suggested in her interventions, offered three important lessons for Nepal. First, implementation plans should be based directly in the human rights commitments assumed by Nepal in the U.N. Convention on the Rights of Persons with Disabilities (CRPD). This treaty, which Nepal ratified in 2010, ushers in an essential paradigm shift in how disability rights are understood and implemented in practice around the globe. That is, grounded in the principle of “full and effective participation and inclusion in society”, the CRPD shifts the paradigm from a medical model, focused on segregation, institutionalization, and parallel-tracking difference, to a social or human rights model, focused on inclusion, social adaptation, social accessibility, and individual autonomy. It correspondingly guarantees the rights of person with psychosocial disabilities to live in the community with rights equal to others (not in jails or institutions) (art. 19, CRPD), to access health services in the community on an equal basis with others (with mental health services mainstreamed in the general care system, not in segregated silos) (art. 25, CRPD), and to the exercise of legal capacity (not to have one’s decisionmaking capacities arbitrarily stripped through guardianship laws, imprisonment, or other common discriminatory practices) (art. 12, CRPD).
Melish expressed her concern that the CRPD had been mentioned in no government progress report. Far more concerning, the limited implementation measures reported to have been taken to date appeared designed to strengthen and reinforce, not overcome, Nepal’s reliance on the old medical model. Such reliance has led to a system in which mental health services are not offered through the general public health system, but rather exclusively (if at all) through the nation’s jails or a single capital-based institution which involuntarily holds almost one hundred person. A draft “Mental Health Treatment and Protection Act” [LINK to the bill] currently before the office of the Ministry of Health aims, moreover, not to mainstream services but rather to strengthen that unitary mental health institution. The result is extraordinary levels of abandonment, abuse, rape, social stigma, and suicide among the nation’s population of persons with psychosocial disabilities, as highlighted by Matrika Devkota in his interventions. A critical first step in the implementation process, then, Melish offered, was for the government to recognize expressly its commitment, under the CRPD and as the overriding goal of the implementation process, to transforming the nation’s prevailing segregation-based system into a community-based one, built on the principles of individual dignity, autonomy, and inclusion for all.
Melish cited as a best practice in this respect an October 2013 accord signed between the government of Guatemala and human rights litigants, in which Guatemala expressly “commits itself to ending improper and unnecessary detentions through the creation of community programs and support systems” (emphasis added). This express commitment was made, moreover, in “fulfillment of obligations Guatemala has accepted by ratifying the [CRPD]”, including “CRPD article 19, which establishes the right of people with disabilities to live in the community with choices equal to others.” Nepal’s government should take a similar first step, helping to ensure that all action steps taken in the implementation process are directed toward institutionalizing a paradigm of inclusion, not one of isolating and stigmatizing exclusion.
The second lesson offered by comparative national experience, Melish noted, is that being a country of limited resources is not a legitimate defense for failure to take meaningful and immediate concrete measures of reform. The Nepali government raised this standard resource defense in both its 2008 legal arguments before the Nepali Supreme Court and in the 2014 workshop. In response, Melish offered the concrete experiences of two similarly poor countries, Paraguay and Guatemala, likewise facing complex patterns of intersocietal violence and other challenges. While reform efforts in both countries recognized that system-wide change would take time, each also recognized that meaningful measures had to be taken immediately to begin that reform process. Both countries thus began with firm commitments to initiate time-bound pilot programs in a variety of areas, including community-based provision of mental health services (for both acute psychiatric care and mainstreamed outpatient care in general health clinics) and residential supports. These pilot programs could then be learned from and scaled-up as part of a national planning process.
The third highlighted lesson relates to the necessity of incorporating active civil society participation and accountability systems into the implementation process, including in the design, monitoring, and implementation of pilot programs and strategic action plans. Indeed, Nepali civil society organizations like Koshish have already been focusing on a new, community-based model, promoting the adoption of inclusive programs that mainstream mental health services into the general health system, including first care centers spread around the country. This proven knowledge, commitment, experience, and sensitivity to affected populations must be incorporated into the implementation process, ensuring that all relevant stakeholders can play an active role in the process of rights-based reform. The use of stakeholder-prioritized indicators and benchmarks around short, medium and long-term goals, especially when coupled with mechanisms of institutional oversight, have proven key to ensuring the success of similar enforcement strategies in local contexts around the globe, Melish stressed, citing examples. Nepal should, then, consider actively incorporating them into its own implementation strategies. By doing so, it can help to ensure that the paradigm shift demanded by the CRPD takes effective root in Nepal, overcoming the culture of isolation and stigma that currently prevails.
Two representatives from the Ministry of Women, Children and Social Welfare spoke in relation to the presentation made by Professor Melish. Mr. Rabindra Acharya, the disability desk officer at the Ministry of Women, Children and Social Welfare gave a detailed account of how the government of Nepal has been making an effort to implement the Convention on the Rights of Persons with Disabilities (CRPD). Mr. Purnabhakta Tandukar, the acting Secretary of the Ministry of Women, Children and Social Welfare, appreciated the presentations made by Professor Melish and expressed that the government of Nepal could learn from the Latin American experience. He highlighted the recent efforts the government of Nepal is making by approving the accessibility guidelines and drafting the new Disability Act to replace the earlier legislation, which is not compatible with the CRPD.
The January 15-16 workshop addressed exactly this latter issue and focused on raising awareness with regard to the general principles and rights recognized within CRPD’s new paradigm (the social model). This second workshop brought together more than 40 health professionals and disability rights activists from the different regions of Nepal with the objective of supporting local organizations in breaking the silence around psychosocial and intellectual disability, a silence that fosters stigmatization and inhibits further mobilization of disability rights’ organizations in Nepal.
Matrika Devkota, Founder of Koshish, started the meeting with an overview of the Nepali context with regard to persons with psychosocial disabilities. He also described Koshish’s projects with the community and portrayed a number of individual stories that attested for the possibility of full inclusion. Watch the documentry on “transforming lives. Following Devkota, Shudarson Subedi, NFDN’s President, highlighted the need to include persons with disabilities in Nepalese society, mentioning the current struggle to assure their participation in the Constitutional Assembly.
Professor Tara J. Melish of SUNY Buffalo Law School, a participant in the drafting of the CRPD, highlighted three priority areas for awareness raising: (1) the general principles and key rights protected in the CRPD for persons with psychosocial disabilities; (2) the mechanisms of implementation contemplated by the treaty, how they might be used in Nepal, and other relevant strategies of enforcement; and (3) best practices in enforcing CRPD norms, especially in comparative countries of limited resources.
After clarifying the fact that disability is socially constructed, Prof. Melish stressed the general principles enshrined in the CRPD that are targeted at overcoming the societal barriers that impede full participation of persons with intellectual and psychosocial disabilities in society. These principles, which should be used to guide policy and decisionmaking in all fields, include in particular the principles of “full and effective participation and inclusion in society” and “respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons” (art. 3, CRPD). Melish also discussed the meaning of six key CRPD rights that are especially relevant for promoting inclusion of persons with psychosocial and intellectual disabilities in the Nepalese context: (1) the right to equality and non-discrimination (art. 5, CRPD); (2) the right to legal capacity and equal recognition before the law (art. 12, CRPD); (3) the right to live independently and be included in the community (art. 19, CRPD); (4) the right to the enjoyment of the highest attainable standard of health without discrimination (art. 25, CRPD), (5) awareness raising to combat stigma (art. 8, CRPD), and (6) freedom from violence and abuse (art. 16, CRPD). She provided examples of how these rights can be understood in real life contexts and how they have been interpreted by key international human rights bodies, including the UN Committee on the Rights of Persons with Disabilities (UNCRPD) and the European Court of Human Rights (ECHR).
As described by Prof. Melish, the CRPD was not intended to create new rights. Rather, it was designed to ensure that persons with disabilities could in fact enjoy the internationally recognized human rights guaranteed to all under existing laws. Because attitudinal, architectural and legal barriers to participation and inclusion have long served to prevent such persons from enjoying their rights on an equal basis with others, the CRPD was designed to help identify and provide legal tools for lifting those barriers. Persons with disabilities have the right to make decisions regarding their reproductive health, marriage, work status, education, health, and so forth. In this vein, Prof. Melish highlighted the need to transition from a model of guardianship, based on substitute decision-making, to a model of supported decision making and legal capacity. The ECHR has, for example, already decided cases against Russia, Serbia and Bulgaria where the practice of guardianship was considered to be unlawful for disproportionately denying persons with disabilities’ legal capacity. Likewise, the UNCRPD has found that Hungary’s constitutional provisions denying persons under guardianship the right to vote in political elections violate multiple provisions of the CRPD, including articles 5 (non-discrimination), 12 (legal capacity), and 29 (political rights). Professor Melish noted that such developments can assist advocates in Nepal in challenging equally discriminatory laws and policies that currently affect them. One example is Nepal’s NGO Act. According to participants, the Act’s bylaws deprive persons with psychosocial disabilities of the right to register NGOs in Nepal. Such restrictions, Melish noted, would appear to violate not only CRPD articles 5, 12, and 29, but also Nepal’s general obligation to “actively involve” persons with disabilities, through their representative organizations, in the development, implementation, and monitoring of legislation, policies, and other decision-making processes that affect them (arts. 4.3 and 33, CRPD). Persons with disabilities also have the right to receive health services within the general health system, which requires a transition from a model of institutionalized care to a model of community-based care.
Prof. Melish also discussed the set of national and international mechanisms of implementation, monitoring, and enforcement directly contemplated in the CRPD for ensuring the effective implementation of its norms. At the national level, CRPD article 33 contemplates that state parties organize the governmental apparatus in a way that facilitates the effective incorporation of CRPD norms across policy sectors and levels of governance. It thus requires states parties to designate “one or more focal points” for implementation matters within government, and recommends a “coordination mechanism” to facilitate related actions across ministries and departments. At the same time, it recognizes the critical importance of independent monitoring and civil society participation. It thus requires states parties to have an independent mechanism, like a National Human Rights Institution, in place to promote, protect and monitor implementation of the Convention, and stipulates that “[c]ivil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process” (emphasis added). Such direct civil society participation is considered so important to effective implementation of the treaty that it is included as a general obligation of government (art. 4.3, CRPD).
These measures are supplemented by treaty requirements that Nepal and other state parties collect appropriate and disaggregated data and statistics on persons with disabilities and their needs, information which must be disseminated widely to the public (art. 31, CRPD). This requirement—likewise highlighted by the Nepali Supreme Court in its 2008 decision—is designed to enable states to formulate and implement effective policies to give effect to the treaty’s protections, as well as to enable the regularized monitoring and assessment of such policies and the continual identification of new and old barriers faced by PWD in the practical exercise of their rights. The fact that Nepal has yet to undertake such data gathering in any effective way is highly concerning and should, Prof. Melish suggested, be a focus of civil society advocacy efforts. She provided examples of how civil society groups in other countries, including Mexico and Northern Ireland, have used their own monitoring efforts and data collections to set priority rights-based indicators and reasonable benchmarks of progress in areas identified of particular concern for persons with psychosocial disabilities. These have included, for example, the setting of benchmarks around the availability and adequacy of follow-up care for persons at risk of suicide, an area of identified priority concern for Nepali self-help groups like Koshish.
Where domestic level protection efforts have proved inadequate, Nepali advocates may likewise utilize a set of international mechanisms of protection. Prof. Melish highlighted four such mechanisms recognized by the CRPD and its Optional Protocol: (1) the periodic reporting process, including the presentation of shadow reports to the UN Committee on the Rights of Persons with Disabilities (UNCRPD), criticizing and correcting reports elaborated by the government on the measures taken and progress achieved in implementing CRPD rights; (2) the presentation of individual cases to the Committee alleging the concrete violation of CRPD rights to the detriment of identified individuals and groups of individuals (arts. 1-5, OP-CRPD an inquiries procedure, in which reliable information indicating grave or systematic violations of CPRD rights can lead to a Committee investigation and onsite visit (arts. 6-7, OP-CRPD, and (4) strategic use of the inputs, outputs, and processes of the biennial Conference of States Parties, in which governments and civil society actors share experiences and best practices regarding implementation of the CRPD. Strategic planning among Nepali stakeholders should take place, Melish suggested, to identify the most effective ways these processes can be used to support local change efforts at home.
Finally, a comparative analysis was traced between the Nepalese, Guatemalan, and Paraguayan contexts, with a focus on how the latter two countries have initiated (or are initiating) concrete programs of community-based care for persons with disabilities. In each of these countries, social problems related to intellectual and psychosocial disabilities have long been obscured by a medical approach. All three countries have effectively excluded mental health provision from the general public health system and have instead created a single, capital-based psychiatric hospital to serve the entire population. As in other institutions of the kind, severe violence, abuse and neglect, severe overcrowding, insufficient staff and heavy reliance on physical and medical restraints were the rule.
Human rights advocates challenged this model in precautionary measures petitions before the Inter-American Commission on Human Rights. In response, both Paraguay and Guatemala took up the challenge of reform. Professor Melish highlighted the agreements reached between the respective governments and civil society advocates in both countries, described the process of coming to such agreements, and some of the key undertakings agreed to. She highlighted in particular the accord reached with the Guatemalan government in late 2013, through which the government agreed to multiple concrete measures, including: (1) the immediate release of 60 detainees who had been or remained institutionalized without cause; (2) the bringing of mandatory habeas corpus actions on behalf of all persons detained in the institution within three months; (3) the establishment and funding within a maximum of two years of community-based pilot programs in four areas—supported residential care in communities (six group homes with ten beds each); free mental health services in the community (the creation of 44 community health clinics, 2 in each Department, to provide free medication and supportive services in the community on an outpatient basis); acute, short-term care aimed at stabilization (programs in four general hospitals); and mobile community supports (four mobile mental health teams to provide services for persons with intellectual and psychosocial disabilities within their own communities); (4) the training of judges and public defenders to understand the implications of a mental health system based on institutionalization and available community-based alternatives; (5) the drafting of a new law on mental health with the participation of civil society, following the social model; and (6) the creation of a comprehensive, multi-stakeholder monitoring system to ensure the enforcement of the agreement, including regularized reporting at both the national and international levels.
The same types of concrete commitments and plans of action could be made in Nepal, opening the way to a more inclusive and systemic transformation of the national health care and social welfare system over the long-term.
As underscored by Tara Melish, Nepal is now in a critical moment where a new constitution is being adopted; a bill on mental health and an action plan are being discussed; and the possibility of structuring new public policies on mental health is at stake. On the one hand, Nepal has the potential of creating a new paradigm of inclusion, by establishing a community-based mental health system with broad stakeholder participation. On the other, it is subject to the risk of falling back on the old, isolating, institutionalizing model.