COMMITTEE ON THE RIGHTS OF PERSONS WITH DISABILITIES DISCUSSES THE RIGHT TO LIVE INDEPENDENTLY AND BE INCLUDED IN THE COMMUNITY
The Committee on the Rights of Persons with Disabilities today held a day of general discussion on the right to live independently and be included in the community, article 19 of the Convention on the Rights of Persons with Disabilities, with a view to preparing a General Comment on that article. The discussion was organized in three panels.
The first interactive panel discussed independent living schemes and raised issues of autonomy, self-determination and personal choice in law, policy and programmes. The panellists were: Klaus Lachwitz, International Disability Alliance; Rannveig Traustadottir, Professor and Director of the Centre for Disability Studies at the University of Iceland; Michael Njenga, Executive Director, Users and Survivors of Psychiatry in Kenya; Martha Sticklings, Equality and Citizens Rights Department at the European Union Agency for Fundamental Rights; Javier Arroyo Mendez, Foro de Vida Intependiente y Dibertad; Bhargavi Davar, TCI Asia Transforming Communities for Inclusion Asia; Peter Mittler, Dementia Alliance International; and Shantha Rau Barriga, Director of Disability Rights at Human Rights Watch. It was moderated by Theresia Degener, Vice-Chairperson of the Committee.
Damjan Tatić, Committee Member and Member of the Working Group on article 19, chaired the interactive panel on diversity and delivery of services and financial dimension for the effective implementation of article 19. The following speakers took the floor as panellists: Adolf Ratzka, Director of Independent Living Institute and Member of the European Network on Independent Living; Gerard Quinn, Director of the Centre for Disability Law and Policy, National University of Ireland; Jamie Boiling, Executive Director, European Network on Independent Living; Facundo Chavez Penillas, Disability Advisor at the Office of the High Commissioner for Human Rights; Fadia Farah, Vice-President, Inclusion International; Abner Manlapaz, President, Life Haven; and Oliver Lewis, Executive Director, Mental Disability Advocacy Centre.
The final panel addressed the way forward regarding de-institutionalization and community-based services. Moderated by Stig Langvad, Committee Member and Member of the Working Group on article 19, the panel heard statements by Rosangela Berman Bieler, Chief of the Disability Section at the United Nations Children’s Fund; Senada Halićević, President of the European Platform of Self-Advocated; Renan Jorge Chuaqui Kettlun, Professor, Sociology Department, Valparaiso University; Sookkyung Park, Civic Education Professor, Humanitas College, Kyung Hee University; Juan Cobeñas, Self-Advocate, Associación Azul for Independent Living of Persons with Disabilities; and Kapka Panayotova, Executive Director, Centre for Independent Living, Sofia, and Co-Chair of the European Network on Independent Living.
The concluding comments and closing remarks were provided by Danlami Basharu, Committee Member and Member of the Working Group on article 19, Estefan Tromel, Disability Advisor at the International Labour Organization; Maria Virginia Bras Gomes, Member of the Committee on Economic, Social and Cultural Rights; and Theresia Degener, Vice-Chairperson of the Committee.
The Committee will next meet in public at the Palais Wilson on Thursday, 21 April at 5 p.m. for the closing of the session.
Opening Remarks
CATALINA DEVANDAS, Special Rapporteur on Disability, speaking in a video message, stated that the Convention was the first international document to recognize the right of persons with disabilities to independent living. The involvement and support of communities was an important prerequisite in that regard.
SONIA VINAS, Assistant Director of Fundación Universia, said that all stakeholders were responsible for guaranteeing social inclusion in both urban and rural milieus. The right to independent living, to liberty indeed, should be integrated from early on. The right to education and the right to employment were closely linked to the right to live independently. In that regard, inclusive education at all stages was of paramount importance. It was vital for persons with disabilities to have an opportunity to be productive and for them to receive adequate training so that they could achieve professional autonomy. Such policies were based on the principles of equity and self-determination, which would allow persons with disabilities to be independent actors, responsible for their own lives.
MARIA VIRGINIA BRAS GOMES, Member of the Committee on Economic, Social and Cultural Rights, stated that she believed in the mutually reinforcing roles of treaty bodies. The absence of an exclusively disability-related provision in the International Covenant on Economic, Social and Cultural Rights had not prevented the Committee from drafting a General Comment on persons with disabilities in 1994. States were asked to take steps to provide necessary measures with the view of ensuring the maximum possible independent living standards for persons with disabilities. It was now impossible to forget that persons with disabilities were full rights holders and entitled to the full enjoyment of all human rights.
Interactive Panel on Independent Living Schemes
KLAUS LACHWITZ, International Disability Alliance, noted that many people did not have the right to choose independent living. He gave an example of an institution in Germany, where four adults with disabilities lived in one room. They seemed content, but had no idea that other opportunities existed. Once they had tried independent living at a new location, they had chosen the latter. It was important that persons with disabilities had the legal capacity to make their own decisions. It was unacceptable that directors of some institutions had full guardianship over all persons placed there. Personal assistance and financial support often needed to be provided to the families of the persons with disabilities, with whom they lived. Budgetary problems around the world were a frequent challenge.
MICHAEL NJENGA, Executive Director, Users and Survivors of Psychiatry in Kenya, said that in Africa, persons with disabilities mostly lived with their families and in their communities, as the African lifestyle was rather communal. Most persons with disabilities lived in extreme poverty and suffered from a high level of unemployment. Therefore, they depended a lot on their families. One of the biggest challenges was community perception: if a community perceived someone as less valuable, dangerous or incapable, one remained in the periphery. Reasonable accommodation for persons with psycho-social disabilities was a challenge vis-à-vis their inclusion in their communities. Mental health services were purely built on a medical model. Support services had to be provided within the community.
RANNVEIG TRAUSTADOTTIR, Professor and Director for the Centre for Disability Studies, School of Social Science, University of Iceland, said that national legislation might obligate municipalities to offer particular services for independent and community living. Standards within the same State ought to be unified, so that different municipalities would provide the same level of services. Another way to work together was to strengthen the implementation and monitoring mechanisms outlined in Article 33. It was important to build capacities at national and local levels, as there was still a lack of knowledge on disabilities. Everyone involved should understand the issue of disability and related human rights principles. The role of organizations of persons with disabilities was vital; persons with disabilities had to be included as active members, consultants and monitors. Capacity building had to be accessible to all persons with disabilities.
MARTHA STICKLINGS, Equality and Citizens Rights Department, European Union Agency for Fundamental Rights, noted that article 19 included interaction with other articles, and when monitoring article 19, other rights also ought to be taken into consideration. Misappropriation of terminology related to independent living was one of the issues; linked to it was the question of having clear and consistent standards which ought to be monitored. The involvement of self-advocates and organizations of disabled persons was of critical importance for monitoring. Using the framework of structure, process and outcome indicators developed by the Office of the High Commissioner could help break down different stages of article 19. Ms. Sticklings also emphasized the importance of having clear targets and comparative research across countries.
JAVIER ARROYO MENDEZ, Foro de Vida Independiente y Dibertad, stated that some practices had been qualified as “independent living”, but they were far from it in reality. Article 19 had to do with decision-making on independent living, but also on other decisions in day-to-day life. It was very important to have a way of measuring its implementation, and one of the ways was to look at the way States spent money in that regard. The role of disabled persons’ organizations should be fundamentally focused on training and capacity building for those people involved with persons with disabilities, but also for persons with disabilities themselves, so that they could decide on how they wanted to live.
BHARGAVI DAVAR, TCI Asia Transforming Communities for Inclusion Asia, believed that the most important aspect of implementing article 19 related to how States worked with communities. For article 19 to be fully realized, there was a need for small social units in local communities within families, schools and workplaces, sharing resources and working together. The availability of the continuous provision of diverse services and their interconnectedness were of paramount importance. Services should not come too much in the way of the existing non-formal care systems. The Committee was asked to discuss the relation of the State to the communities through a wide range of actions, including awareness, capacity building and the creation of new kinds of organizations. In some countries in Asia, people preferred a clubhouse or hostel model, for example; in certain communities “circles of care” were a successful model.
PETER MITTLER, Dementia Alliance International, said that persons with dementia lived independently and were included in the community all their lives, but as soon as they were diagnosed, they were excluded. People with dementia were generally older and were considered as having cognitive impairments. The Alliance now had 1,500 members and was growing regularly. People with dementia were also working closely with people with Alzheimer’s disease, but they did not consider themselves disabled and were disinclined to join the disability movement. The Committee was asked to use every possibility to stress that people with dementia should not be neglected and left out of the system. The World Health Organization was the most disability-friendly United Nations organization, but people with dementia seemed to be excluded from rehabilitation processes, especially in low- and middle-income countries.
SHANTHA RAU BARRIGA, Director of Disability Rights at Human Rights Watch, stressed that there were laws around the world which allowed for the involuntary detention of persons with disabilities, and they had few meaningful chances to challenge their detention. The General Comment should make a specific remark to involuntary detention and hospitalization of persons with disabilities. People with disabilities might be isolated in various ways even though they lived with their families; they often remained confined to their homes. People with psychosocial disabilities were sometimes shackled in chains in wooden stocks, and denied interaction with their community. The principle of leaving no one behind was particularly important, and high support need was no justification for institutionalization.
Interactive Panel on Diversity and Delivery of Services and the Financial Dimension for the Effective Implementation of Article 19
ADOLF RATZKA, Director of Independent Living Institute, Member of the European Network on Independent Living, explained that personal assistance allowed persons with disabilities to do what they could otherwise do were they not disabled. Assistance was provided in various spheres of life, from schooling to raising children, and had, inter alia, the purpose of securing the freedom of choice. Assistance hours should be compensated at competitive rates. Personalization and self-determination were the key concepts which had to be taken into consideration. The user was a customer and a subject, not an object. The conditions of those who became disabled after the age of 65 were worse than of those who had been disabled beforehand. On average, personal assistance did not cost more than community-based services provided by local governments.
GERARD QUINN, Director of the Centre for Disability Law and Policy, National University of Ireland, Co-Chair of a European Union Structural Funds Watch Research Initiative, stated that progressive achievement coloured the way of driving the process forward. The Committee had to be very careful about cases of regression. There was an immediate obligation on States to begin planning, which included taking stock, identifying the barriers and envisioning their removal. Article 19 was broader and deeper than just de-institutionalization; resources needed to be identified which could be shifted from inefficient to more efficient systems. There had to be realistic “catch-up” plans, which would allow upcoming generations a realistic chance of becoming integrated in the society.
JAMIE BOILING, Executive Director, European Network on Independent Living, stressed that independent living was not a Western concept. It should be looked at as a human right which should be available regardless of the country, culture or religion. A disabled person could be oppressed living in an institution, but also living with his family. Independent living meant exercising one’s choices, having access to services, and being able to live an ordinary life. Sweden, for example, provided personal assistance to a large number of persons with disabilities; they might not all be able to make their own decisions, but they were provided with the possibility to be heard. Personal assistance provided for a much higher quality of life.
FACUNDO CHAVEZ PENILLAS, Disability Advisor at the Office of the High Commissioner for Human Rights, said that the people-centred focus was very important: everyone had to understand the possibility of services available to them. The Committee should consider in its General Comment a number of counter measures to the medical approach. There should be clear guidelines on medical and charity-style approaches. The linkage between social protection and the provision of services needed to be taken into consideration. Households with children with disabilities faced particular challenges, and women were often stigmatized as natural caregivers. Gender-biased social schemes should be avoided.
FADIA FARAH, Vice-President, Inclusion International, stated that families were the first line of support for persons with intellectual disabilities. Families needed to be provided with a lot of information so that they could appropriately care for the person with intellectual disabilities, such as sending the person to an inclusive school. Families with members with intellectual disabilities ought to be given a voice and become visible. Persons in institutions were often humiliated, did not own anything, did not receive education and had no privacy. Therefore, Ms. Farah stressed, institutions were not a place to live and persons placed there had no real life.
ABNER MANLAPAZ, President, Life Haven, explained that in the Philippines no public funds were spent to support the delivery of services. Until now, there was no agreement on the design of implementation, as there was still heavy reliance on the role of the family. People with extensive disabilities were at the centre of advocacy. Projects to support independent living were submitted to international aid agencies for funding. There was a contrasting experience between using one’s family member to provide support and utilizing personal assistance. Family members of persons with disabilities had their own lives, and personal assistance service ought to be recognized as a human right, which would provide persons with disabilities with the possibility to make their free personal choices.
OLIVER LEWIS, Executive Director, Mental Disability Advocacy Centre, said that the lack of recognition of community living in domestic law was the number one challenge. Governments had to adopt legislation to make community living a right. De-institutionalization strategies often included unreasonably long timelines or excluded certain people or even certain institutions from being shut. The Committee should give guidance to States on timeframes and de-institutionalization timeframes. It was a tragedy that throughout the world de-institutionalization often turned into re-institutionalization to places with different names, but where an institutional culture still prevailed. Persons with disabilities needed to have options and choice, said Mr. Lewis.
In the ensuing discussion, one speaker mentioned the importance of reaffirming article 14 and 15, and stressed the importance of having services outside of the mental health system. Another representative of the civil sector noted that there were many policies in place which excluded older persons with disabilities. Personal assistance, even when provided, was often far from complete. The issue of how to include persons with disabilities into communities was raised by a speaker, who asked about models of social inclusion when there were no disability or community-level services. A panellist said that solutions could be gradually identified and developed in communities. A question was raised on the acceptability of having waiting lists for persons with disabilities; it was explained that there was nothing legal about such lists. A panellist said that the big problem with the medical model was its abuse by public policy makers.
A representative of Israel expressed support for the “CRPD Now” campaign and presented the Israeli legislation on the rights of persons with disabilities. Measures taken included allowances given to persons with disabilities and support provided to people living independently in their homes. The current policy was to integrate such persons into their communities.
Interactive Panel on De-Institutionalization and Community-Based Services: Way Forward
STIG LANVAD, Committee Member, said that institutions were not only about where one lived, but about whether and how one could live independently. In Scandinavian countries institutionalization included many limitations to independent living.
ROSANGELA BERMAN BIELER, Chief of the Disability Section at the United Nations Children’s Fund, stated that children with disabilities depended on adults for support, both because of their age and their disability. There were many reasons not to place a child in an institution, and in Europe a lot of work was being done to support families taking care of their disabled children. There was evidence from neuroscience that showed that children in institutions had a reduced potential of brain development. The most important reason for not placing children into institutions was that children needed love, which was difficult to find in institutions. The cost of institutions was always higher than of the alternatives. Investments ought to be made in community services at the level of municipalities.
SENADA HALIĆEVIĆ, President of the European Platform of Self-Advocates, speaking of actions which were needed to ensure independent living, stressed the importance of applying domestic laws in line with the Convention. She provided a personal example, explaining that that she was self-employed, earning her own salary, but also needed support. There were many persons with disabilities who would like to work, but instead chose to receive social benefits. Many persons with disabilities were educated in obsolete professions, which made it more difficult for them to find a job and live independently. All should be demanding that the Convention be implemented in all corners of the world; persons with disabilities were not asking for something impossible, but for the rights belonging to human beings.
RENAN JORGE CHUAQUI KETTLUN, Professor, Sociology Department, Valparaiso University, said that it had to be ensured that there were enough group homes to ensure that persons with disabilities could be cared for. If one looked at the number of homes in existence today, people could not really choose, but also had to follow a set of rules. That problem could be mitigated by giving people individualized care plans; if a person was able to leave home, they should be able to do so when they wanted. Those living with their families also did not have the choice, as their family members could not often respect their wishes. If a person just followed the rules all the time and did not have a choice, they became passive and submissive. Persons had to be given true freedom.
SOOKKYUNG PARK, Civic Education Professor, Humanitas College, Kyung Hee University, said that in the Republic of Korea institutions increased by four to five per cent per year. More than 30,000 persons with disabilities lived in about 1,500 residential institutions. It was necessary to define the concept of de-institutionalization and independent living by adopting the principles articulated in the Convention. The core problem of implementing de-institutionalization included conflicts among the stakeholders and lack of awareness on the part of the community as a whole. It was necessary to develop a road map for de-institutionalization at the national level and to clarify the roles of the central and local governments. A pilot project for de-institutionalization should be carried out, with flexibility ensured in supporting budgets to meet individual needs.
JUAN COBEÑAS, Self-Advocate, Associación Azul for Independent Living of Persons with Disabilities, expressed concern over the right to independent living of users of alternative communications systems. Their voices had to be properly heard, which placed them in an extremely fragile situation. It was vital to have the support of strengthened support systems. Without the opportunity to speak out, such persons could not become genuine decision-makers. In order to ensure independent living, services made available to persons with disabilities had to be properly monitored by them. Those responsible should consult with persons with disabilities who were living in an independent manner. Personal assistance was vital, and personal assistants ought to be duly trained. There should also be a system for ensuring that organizations held an archive detailing how persons with disabilities could communicate.
KAPKA PANAYOTOVA, Executive Director, Centre for Independent Living, Sofia and Co-Chair of the European Network on Independent Living, emphasized the importance of peer support and empowerment. When professional care was received, it always came with the dependence on those who provided the care. The best support, on the other hand, came from peers – people who had been or still were in the same situation as persons with disabilities. Empowerment meant that persons with disabilities believed in and relied on themselves. Support should be given priority over care. Parents should support their disabled children to go to school and help them become full-fledged citizens. Inclusive communities should take well-supported and empowered disabled persons, who could express their wishes and needs. Financial support should go to the disabled person and not to the service provider.
Concluding Comments and Closing Remarks
DANLAMI BASHARU, Committee Member and Member of the Working Group on article 19, said that the right to live independently and to be included in the community was the cornerstone to securing that persons with disabilities had choices and could live like all other persons.
ESTEFAN TROMEL, Disability Advisor at the International Labour Organization, believed that the Convention created new rights, and article 19 came to mind in that regard. That article made a great contribution to the United Nations human rights machinery. Clear linkages had been demonstrated between article 19 and a number of other articles. The Committee had a challenging task to draft a General Comment on such an important article. Today’s discussion raised the issues of children and older persons with disabilities, as well as the role of families. The Committee helped understand and agree on terminology, especially since countries were selectively changing services while claiming that they were complying with the Convention. The involvement of persons with disabilities through their organizations was of consequential importance, but States’ obligations were also clear.
MARIA VIRGINIA BRAS GOMES, Member of the Committee on Economic, Social and Cultural Rights, said that General Comments were meant to provide guidance to States on how to overcome a number of gaps. States needed to be reminded of their binding human rights obligations and progressive realization of rights, using the maximum of available resources. Article 19 could be a transformational element on how they looked at independent living. The right to independent living meant that persons with disabilities had the full rights to decide on how, where and with whom to live. Decentralization of responsibilities and privatization of goods, facilities and services were among the challenges.
THERESIA DEGENER, Vice-Chairperson of the Committee, stressed that people around the world wanted to live independently; they did not want to be institutionalized or dependent on family care. Institutionalization was a harmful traditional practice. Inaccessible community services excluded disabled people and made them dependent. Lack of consumer-driven assistance services discriminated against disabled people by denying them autonomy and equality. All participants were encouraged to send their contributions to the Committee in writing, in a succinct manner.
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CRPD16/011E