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Monitoring the implementation of the Standard Rules on
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Final Report of the Special RapporteurContents I. Background and framework for mission II. Account of the activities of the Special Rapporteur
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20. When my mandate was renewed by the Economic and Social Council on 27 July 1997 (resolution 1997/19), no major change was made in the terms of reference for my work. Therefore, in accordance with the guidelines in chapter IV of the Standard Rules document, I have continued to give advice to Governments upon request, to participate in seminars and conferences to discuss the practical implementation of the Rules and to study the implementation of the Rules worldwide through the use of surveys. It has to be borne in mind, however, that these activities had to be carried out within limited available resources. I would also like to add that it took nearly one year of the second monitoring period before new contributions from Member States started to come in.
A. Promotion of the implementation of the Standard Rules
21. During the second period of monitoring, I visited the following countries in transition: Mongolia, Armenia, Bulgaria, Romania and Russia. With the support of the Council of Europe I have been involved in the planning of a national conference on disability policy for the Russian Government, organizations of persons with disabilities and representatives of all regions of the Russian Federation. Unfortunately, the Conference has been postponed twice.
22. One serious problem for many of the countries in transition is that they have not yet developed guidelines for a modern disability policy. In practically all countries in transition there are very serious problems in handling the issue of large institutions for the disabled. Severely disabled people, mainly persons with intellectual, psychiatric and multiple disabilities, have spent their whole lives in such institutions. The attention given to this problem is increasing both in the countries concerned and among international development cooperation agencies.
23. Another problem, shared by many countries in transition, has to do with the relations between existing NGOs. Old organizations exist for groups of the blind and the deaf, because they were accepted by the old system as partners in creating employment opportunities. For other groups of disabled persons, new organizations are being formed and there are sometimes difficulties in developing good working relations between these different organizations.
24. Since 1997, I have also visited a number of developing countries to discuss disability policy, among others, Thailand, Jordan, Chile, Uruguay, Mexico and Costa Rica. The programmes I have seen during my visits have varied considerably. In some cases our dialogue has concerned rather basic issues of disability policy. In other cases new laws had been adopted and our discussions dealt with issues of implementation. In some instances I have formulated recommendations in a follow-up letter to the President or the Prime Minister of the country concerned. These letters have often played a role in the development of new measures.
25. During this second period I have also participated at international conferences, some of which have raised new subjects or dealt with the Standard Rules from a specific perspective. In 1997, I participated at a conference organized jointly by the Economic and Social Commission for Asia and the Pacific and Rehabilitation International. I was invited to speak at the "Meeting of senior officials to mark the mid-point of the Asian and Pacific Decade of Disabled Persons (1993-2000)" (Seoul, 26-29 September 1997). In my statement, I pointed to the fact that the Agenda for Action, which forms the basic document for activities during the Decade of Disabled Persons, and the Standard Rules were elaborated simultaneously. They are of the same spirit but serve somewhat different purposes. The Standard Rules are a set of guidelines while the Agenda for Action mainly identifies a number of important areas for development. The two could, and in my opinion, should be combined in national efforts to improve living conditions for persons with disabilities. Everything should be done to avoid duplication of work and the two monitoring mechanisms should exchange information more systematically.
26. In 1998, I participated at a world forum on human rights and blind people, held in Uruguay (Montevideo, 16-18 November 1998). In my statement I pointed to the new and important opportunities for strengthening the rights of persons with disabilities emerging through the developments in the field of human rights in recent years. I emphasized the key role that has to be played by organizations of persons with disabilities in spearheading this development. I also used the opportunity to congratulate representatives of countries on the American continent for the progress they have achieved in drafting a regional convention on the rights of disabled people.
27. In January 1999, an Africa seminar on development cooperation, disability and human rights was organized by Disabled People South Africa and the Swedish Organization of Handicapped-International Aid Foundation (SHIA). The conference adopted a resolution proposing an African decade of disabled people during the years from 2000 to 2009.
28. In my speech I gave an account of the main recent events in the human rights area. I also permitted myself to make the following suggestions concerning the issue of an African decade of disabled people:
(a) The Governments of Africa should recognize, support and actively participate in the programmes of the decade;
(b) The organizations of disabled people must be directly and actively involved at all stages and levels of the programme;
(c) There must be an efficient planning and coordinating function for the programme;
(d) Governments should include disability needs in their general negotiations for development cooperation;
(e) There should be an agreed overall programme for the decade;
(f) Sufficient financial backing for the core activities of the programme must be obtained;
(g) The mobilization of disabled people should form a core activity within the programme.
29. A Pan-Arab symposium on the Standard Rules was co-organized in Amman by the Jordanian Government and the Jordanian Swedish Medical Association from 18 to 20 September 1997. Representatives of Governments, professionals and NGOs from 12 Arab countries participated. A statement was adopted in order to guide the development in the different countries. The following recommendations might be mentioned:
(a) Governments should proclaim their commitment to achieve the goal of full participation and equality for persons with disabilities;
(b) Governments should adopt national procedural work plans for the implementation of the Standard Rules through the ministries concerned and other actors;
(c) Governments should recognize the role of organizations of disabled people in representing their groups in matters concerning them;
(d) A national council should be established in each country;
(e) Governments should recognize community-based rehabilitation to involve the local community in raising the standards of disabled persons.
B. Third global survey in collaboration with the World Health Organization
30. The first four Rules in the Standard Rules document are gathered under the heading "Preconditions for Equal Participation". The message conveyed is that measures in these areas must be taken because they constitute necessary measures to enable the individual to participate actively in the community. Three of these Rules, medical care, rehabilitation and support services (including the provision of devices and equipment) are areas of responsibility for the World Health Organization (WHO).
31. In 1998, in discussions between the panel of experts, representatives of WHO and myself, it was agreed that a survey on the implementation of the Rules in these areas should be conducted. WHO offered to make the survey.
32. Information was gathered in 1999 through a questionnaire, sent to all 191 Governments of States members of WHO and to more than 600 national NGOs in the disability field. The information collected covers issues related to the following four Rules: Rule 2 - medical care, Rule 3 - rehabilitation, Rule 4 - support services and Rule 19 - personnel training. The questionnaire, consisting of 35 questions, was distributed in April 1999.
33. The objective of the study was twofold: to identify government policies regarding medical care, rehabilitation, support services and personnel training and to identify strategies adopted and problems encountered when working in the field of medical care and rehabilitation of persons with disabilities.
34. Respondents were asked to answer the questionnaire in order to identify the official policy of the country. In total, 104 Governments responded, a result which must be deemed very satisfactory.
35. Replies were received from countries representing different regions of the world: 17 from the Americas, 25 from Europe, 20 from the Western Pacific region, 4 from the South-East Asian region, 11 from the Eastern Mediterranean region and 27 from Africa.
36. A classification according to socio-economic criteria of the Governments responding shows that there are 18 developed-market economies, 9 countries with economies in transition and 77 developing countries, of which 24 are least developed countries.
37. Replies were received from 115 NGOs. A classification of NGO responses is as follows: 18 responses were received from member organizations of Disabled Peoples' International; 28 responses from member organizations of Inclusion International; 24 responses from member organizations of Rehabilitation International; 23 responses from member organizations of the World Blind Union; 14 responses from member organizations of the World Federation of the Deaf; and 8 responses from member organizations of the World Federation of Psychiatric Survivors and Users. The total number of countries covered by responses from Governments and NGOs is 130.
38. Government information was provided by the division or unit within the ministry responsible for medical care, rehabilitation and support services to persons with disabilities (usually the ministries of health and/or social affairs). Although the constraints imposed by this method of compiling information - which presupposes that the survey will be answered by the most well informed official within the field and that the official will take the time to find answers elsewhere in the event that he/she does not have the answer - the survey represents a unique distillation of information on policy and practice worldwide. It will hopefully be of assistance to policy makers, administrators, rehabilitation specialists and representatives of organizations in the disability field. The study was carried out in close cooperation with my office and will provide a welcome and significant contribution to our knowledge and understanding of the world situation. The full report on the outcome of the survey will be published by WHO in 2000.
39. The presentation in this report, which was made while the analysis of the outcome of the survey was still under way, consists of a selected number of more general questions on each Rule. They mainly concern to what extent services in the defined areas exist, the involvement of governments and other entities and the influence of persons with disabilities and their organizations in these services. Unfortunately, it was not possible to take replies from national NGOs into account.
Medical care
40. According to the opening sentence of the Rule on medical care, "States should ensure the provision of effective medical care to persons with disabilities". The first question concerned the extent to which States comply with this recommendation. An overwhelming majority of Member States (99 of 104) provide services to persons with disabilities. Medical care for children with disabilities is included within the general medical care system in 90 countries.
41. According to the first paragraph of the Rule on medical care, "States should work towards the provision of programmes run by multidisciplinary teams of professionals for early detection, assessment and treatment of impairment".
42. The great majority of countries include prevention and treatment of impairment and rehabilitation techniques in the medical care system and other programmes. Less common are programmes for counselling of parents and early detection and diagnosis. Fifteen countries do not have such programmes.
43. Another question concerned the degree of involvement of organizations of persons with disabilities in the planning and evaluation of these programmes. In the majority of countries (59 of 103), organizations of disabled people are sometimes involved. In only three countries, organizations of persons with disabilities are always involved, whereas in 12 countries organizations of disabled people are never involved in planning and evaluation of medical care programmes. In 29 countries those organizations are often involved.
44. One question requested information as to whether persons with disabilities receive regular medical treatment to preserve or improve their level of functioning and, in countries where they do not, what criteria determines the provision of such care. In 85 of 103 countries, persons with disabilities receive regular medical treatment. In the 18 countries where medical treatment is not provided, the following reasons were indicated: lack of specific programmes (16), lack of staff (12), lack of training (8), negative societal attitudes (9) and economic constraints in the family (12).
45. One question concerned the issue of funding of medical care. Responses indicated that patients in 31 countries pay the full costs themselves. In the remaining countries, medical care is either provided free of charge or covered by mixed systems with patient payment, state subsidies or social insurance. In the 62 countries responding to the question about social insurance coverage of medical care expenditures, the following might be observed: there are 22 countries in which 20 per cent or less of the population are covered by social insurance schemes; and in 27 countries between 81 to 100 per cent of the population are covered by social insurance schemes. The discernible pattern is that when medical care is paid by social insurance, it is either for a small portion of the population (often government-employed individuals) or it is for almost everybody.
46. One question concerned the provision of medical care in villages and poor urban areas. Of the 102 countries which responded, 97 indicated that services are provided in these areas. Of these 97 countries, 88 indicated that they provide primary health care, and 44 indicated that they provide medical care through community-based programmes.
47. Finally, respondents were asked to indicate what services are provided to facilitate information and communication on medical care for persons with disabilities. According to the responses received, the most frequent service provided is easy-reading information (62 of 104 responding countries). Fifty countries provide sign language interpretation and one third of the countries provide information in Braille of information on tape.
Rehabilitation
48. In a first general question, information was requested as to what extent national rehabilitation programmes are provided in Member States. Seventy-three of the 102 countries which responded indicated that national rehabilitation programmes exist.
49. Fifty-one countries (of 104 responding) provide community-based rehabilitation programmes at local levels. Nearly as many provide it at district levels. Thirteen countries indicated that they have no community-based rehabilitation. Concerning institutional rehabilitation, responses indicated the following: 74 countries have rehabilitation institutions at the national level, 56 at the provincial level, 46 at the district level and 22 at the local level. In eight countries no institutional rehabilitation programmes exist.
50. One question concerned which groups receive rehabilitation services. Generally, the responses indicated that rehabilitation programmes are available for many groups in most countries. They are most frequently provided to persons with mobility impairments (99 of 104 responding), hearing impairments (90), visual impairments (89), intellectual disabilities (86) and to the deaf (84). It is worth observing that even for learning problems (e.g. dyslexia), rehabilitation services are provided in a considerable number of countries (69). There are rehabilitation services in as many as 74 countries for persons with mental illness.
51. These high frequencies are in themselves encouraging, but it must be added that they tell little about the actual availability for all those persons in the different groups who are in need of rehabilitation. The availability may differ from covering all who are in need to a small fraction of the group concerned. It must also be borne in mind that the figures above indicate that no services are available in a considerable number of countries: for instance, for persons with hearing impairments in 14 countries and for those with visual impairments in 15 countries.
52. One question concerned in which ways persons with disabilities, their families and their organizations are involved in rehabilitation services. According to the information received, persons with disabilities are most often involved through community-based rehabilitation and as trained teachers, instructors and counsellors and are least involved in the formulation and evaluation of rehabilitation programmes. The same pattern is to be found concerning the families of persons with disabilities, though families are more frequently involved in the above-mentioned activities than persons with disabilities themselves. Regarding the organizations of persons with disabilities, the reverse pattern emerged. Organizations are most frequently involved in the design and organization of rehabilitation services and in the formulation and evaluation of rehabilitation programmes. Representatives of organizations are also most involved as trained teachers. It must also be noted that in a great number of countries, organizations are not involved at all. This is also the case, and even to a greater extent, for persons with disabilities and their families. Regarding community-based rehabilitation, organizations participate to the same degree as persons with disabilities - in 44 countries they take part in such rehabilitation.
Support services
53. In the present report we have selected only questions concerning the provision devices and equipment (crutches, prostheses, hearing aids, visual aids, etc.) to persons with disabilities.
54. Information was requested about government involvement in the provision of such devices. In 87 of the 96 countries providing information on this issue, Governments are involved in the provision of devices and equipment. This high level of involvement is encouraging, but at the same time it must be observed that this frequency of involvement does not indicate to what extent persons with disabilities in need of devices and equipment really get services.
55. A question concerning the funding for such devices and equipment gave the following result. One hundred and four countries responded. The most common way of funding this service is through shared responsibility between government ministries and persons with disabilities. In 28 countries government ministries or municipalities pay fully for such devices and equipment, in nine countries the costs are paid fully by social insurance schemes, in 18 countries they are paid fully by persons with disabilities themselves and in 13 countries NGOs pay fully for assistive devices and equipment. In 32 countries government ministries or municipalities do not pay at all for the provision of these devices and equipment.
56. Concerning what kinds of devices and equipment are provided by Governments, the outcome is the following: the most frequently provided aids are crutches (87 of 104 responding); in 83 countries prostheses/orthoses are provided; in 77 countries wheelchairs are provided; in 64 countries hearing devices are provided; in 62 countries visual aids are provided; in 48 countries devices for daily living are provided; and in 23 countries computers are provided. Devices for people with mobility impairments are most frequently provided, followed by equipment for persons with hearing or sight impairments. Naturally, there is a cost element involved in the different levels of provision of various kinds of equipment. One surprising result is that devices for daily living are not provided by more than half the number of countries providing information.
57. Information was also requested concerning the provision of interpretation services for hearing impaired people: 67 of the 100 countries providing information responded that interpretation services are provided.
58. Information was requested concerning the degree of involvement by persons with disabilities and/or their organizations in the planning of support services. In almost one third of the countries responding to the question, persons with disabilities and/or their organizations are not involved in this process. In 68 of the 99 countries providing information, persons with disabilities are involved in the planning of support services.
Personnel training
59. The first question concerning personnel training was whether Governments ensure that all authorities/agencies providing services in the disability field give training to their personnel. Of 96 responding Governments, 64 indicated that training is not ensured.
60. Between 76 and 47 Governments indicated that disability is a component in the professional training of different groups of staff (physiotherapists, nurses, social workers etc.) in the areas of medical care and rehabilitation.
61. Forty-three Governments (of 92 responding) indicated that they consult with organizations of persons with disabilities when developing staff training programmes.
62. The most remarkable result from this part of the study is that one third of the Governments that participated in the study do not ensure that authorities/agencies providing services in the disability field offer training to their personnel.
C. Progress in human rights
63. One of the most important areas of development during recent years concerns the human rights of persons with disabilities. As Special Rapporteur on Disability of the Commission for Social Development, I have been invited by the Commission on Human Rights to participate in this process. Before giving an account of the recent events, I should like to describe the process, which had already started in connection with the International Year of Disabled Persons.
64. The World Programme of Action concerning Disabled Persons (A/37/351/Add.1 and Add.1/Corr.1, sect. VIII) includes a section on human rights and disability. The following recommendations are of particular interest:
"Organizations and bodies involved in the United Nations system responsible for the preparation and administration of international agreements, covenants and other instruments that might have a direct or indirect impact on disabled people should ensure that such instruments fully take into account the situation of persons who are disabled. (para. 164)
"Particular conditions may exist which inhibit the ability of disabled persons to exercise the human rights and freedoms recognized as universal to all mankind. Consideration should be given, by the United Nations Commission on Human Rights, to such conditions. (para. 166)
"Incidents of gross violation of basic human rights, including torture, can be a cause of mental and physical disability. The Commission on Human Rights should give consideration, inter alia, to such violations for the purpose of taking appropriate ameliorative action." (para. 168)
65. On 29 August 1984, the Subcommission on Prevention of Discrimination and Protection of Minorities adopted resolution 1984/20 in which it decided to appoint a Special Rapporteur, Leandro Despouy, to conduct a comprehensive study on the relationship between human rights and disability. His report, Human Rights and Disabled Persons, was published in 1993 (E.92.XIV.4). Mr. Despouy made it clear that disability is a human rights concern, in which the United Nations monitoring bodies should be involved. Among his recommendations the following might be mentioned:
(a) After the Decade has ended, the question of human rights and disability should be kept on the agendas of the General Assembly, the Economic and Social Council, the Commission on Human Rights and the Subcommission as an item of constant concern and ongoing attention;
(b) The United Nations Committee on Economic, Social and Cultural Rights should assume the supervisory task in the disability field. The Committee should receive a special mandate for this purpose.
66. In 1994, the Committee on Economic, Social and Cultural Rights assumed this responsibility by issuing a General Comment No. 5, in which the Committee made an interesting analysis of disability as a human rights issue.
67. The General Comment stated:
The Covenant does not refer explicitly to persons with disabilities. Nevertheless, the Universal Declaration of Human Rights recognizes that all human beings are born free and equal in dignity and rights and, since the Covenant's provisions apply fully to all members of society, persons with disabilities are clearly entitled to the full range of rights recognized in the Covenant. In addition, insofar as special treatment is necessary, States parties are required to take appropriate measures, to the maximum extent of their available resources, to enable such persons to seek to overcome any disadvantages, in terms of the enjoyment of the rights specified in the Covenant, flowing from their disability. Moreover, the requirement contained in article 2 of the Covenant that the rights ... enunciated ... will be exercised without discrimination of any kind - based on certain specified grounds ... or other status' clearly applies to discrimination on the grounds of disability.
68. At its fifty-fourth session in 1998, the Commission on Human Rights decided to discuss issues relating to human rights of persons with disabilities. I had the opportunity to speak on the item. In my statement I made a series of recommendations, which to a large extent were taken into account by the Commission. A number of Member States and NGOs also contributed to the discussion.
69. As a result of the deliberations, the Commission adopted resolution 1998/31, in which the Commission made a series of statements and recommendations of great importance for future developments in this area.
70. In the first paragraph of the resolution, the Commission recognized the Standard Rules as an evaluative instrument to be used to assess the degree of compliance with human rights standards concerning disabled people. It encouraged NGOs in the disability field to provide relevant information to the Committee on Economic, Social and Cultural Rights and to the Office of the United Nations High Commissioner for Human Rights and to avail themselves of the technical assistance of the Office of the High Commissioner to assist them to function effectively in the human rights sphere. In the resolution, the Commission also encouraged all the treaty bodies to monitor the compliance of States with their commitments in order to ensure full enjoyment of rights by persons with disabilities and called upon Governments to cover fully the question of human rights of persons with disabilities, when reporting under the relevant United Nations human rights instruments. The Commission invited the Special Rapporteur of the Commission for Social Development to address the Commission on Human Rights at its fifty-sixth session, which will take place in 2000. Finally, the Commission requested the Secretary-General to report biennially to the General Assembly on the progress of efforts to ensure the full recognition and enjoyment of human rights of persons with disabilities.
D. Cooperation with the Secretariat and other organizations of the United Nations system
71. A special unit within the Division for Social Policy and Development of the Department of Economic and Social Affairs has the mandate, given earlier in connection with the International Year of Disabled Persons, to serve as the focal point on disability within the United Nations system. The unit is currently strengthening this role by building an Internet information base and by launching a project to create a library by compiling information on international norms and standards. It is also the task of the unit to make an appraisal and evaluation of the World Programme of Action on a quinquennial basis and to provide support to me in my monitoring task. The unit is also responsible for the United Nations Voluntary Fund on Disability which co-finances catalytic projects in developing and transition countries.
72. The involvement in disability by the Statistics Division of the Department of Economic and Social Affairs has grown during the last five years. The work now is mainly directed towards the two important areas of improving statistical concepts, methods and data collection programmes and compiling and disseminating statistical data on disability.
73. As can be seen in the report by the Secretary-General to the fifty-fourth session of the General Assembly, many United Nations funds, programmes and specialized agencies are also involved in the disability field.
74. The United Nations Development Programme (UNDP), the United Nations Children's Fund (UNICEF), the International Labour Organization (ILO), the United Nations Educational, Scientific and Cultural Organization (UNESCO) and WHO are involved in policy development in their respective fields of competence. My impression is that the Standard Rules serve as a basic policy document in this process. In the case of WHO, the new policy document, currently being drafted, explicitly builds on the Rules. In the comparison I have made of the contents of the Rules and documents such as the Salamanca Statement of 1994 and ILO Convention 159, I have found that the language sometimes differs but the goals and principles are identical.
75. All of the above organizations have a considerable number of country projects financed through a variety of governmental or inter-governmental funding mechanisms. In some cases they cooperate in country projects, but to my knowledge this does not occur regularly.
76. In my work I have cooperated with these United Nations entities in many different ways. Local representatives have often participated in the discussions during my country missions. In some cases I have made visits to the headquarters of the organizations to discuss certain issues. As I mentioned earlier, they have made presentations at the two panel meetings, held in 1997 and 1998. The Office of the United Nations High Commissioner on Human Rights also participated in the meetings.
77. During the International Decade of Disabled Persons and for a number of years subsequently, there was a special inter-agency mechanism for coordination and exchange of experience within the United Nations system. As part of reforms of the subsidiary bodies of the system's Administrative Committee on Coordination, the formal yearly meetings were typically replaced by more informal ad hoc mechanisms. A core group, consisting of ILO, UNESCO, UNICEF and WHO, has been meeting informally. During recent years the group has grown. I have been invited to take part and have done so when possible.
78. In my former report to the Commission for Social Development I stated that no serious efforts were made by key international development cooperation agencies to integrate disability measures into their mainstream activities posing the risk that disability, once again, will be left out or marginalized in such development programmes. During the three past years, an encouraging development has begun.
79. In March 1998, I participated in a seminar on disability policy organized by the Human Development Department of the World Bank. Some 30 people from the bank staff (including the head of the Human Development Department) participated in the discussions. At the seminar we were informed that the Bank was initiating a process to develop a disability policy within the organization. Since then, many new initiatives have been taken and representatives of the World Bank have started to participate more actively in international disability affairs.
80. According to a recent report, the basic United Nations documents provide a framework for the activities of the World Bank on disability issues. To effectively implement disability interventions, the World Bank relies on partnership with other agencies, which is fostered through involvement in appropriate conferences and working groups. The Bank recognizes the economic and social value of increasing the participation of disabled citizens in society and has a growing number of projects in this area. A directory of Bank projects has been created and will be updated periodically since it is expected that the number of projects will continue to grow.
81. The World Bank has recently taken a number of initiatives to expand the incorporation of persons with disabilities in the World Bank's work and to help countries to implement their own goals related to access, inclusion, and poverty reduction. As part of the preparations for the next World Development Report, which will focus on poverty, the Bank is preparing an analysis of the linkages between disability and poverty in the developing world.
82. In order to increase the quality of World Bank support to disabled people in developing countries, the Bank is collecting information on good practice in development assistance. Other measures taken to expand the incorporation of persons with disabilities in the Bank's work include the development of an internal working group around the theme of disability.
83. Finally, it should be added that both the Asian Development Bank and the Inter-American Development Bank have recently initiated measures to improve their handling of disability matters.
Informal consultative meeting
84. As a joint initiative by WHO and UNDP, an informal consultative meeting was organized in June 1999. The overall objective of the meeting was to discuss the development of a more effective, collaborative approach to disability that will integrate the broad areas of disability prevention, rehabilitation and human rights issues. Representatives of United Nations agencies, including the World Bank as well as a selected number of NGOs active in the field of disability, participated. I accepted an invitation to chair the meeting.
85. After discussions concerning the global situation, present activities in relation to disability, rights, needs and opportunities for global action and current barriers and means and structure for future collaboration, the meeting agreed on the following appraisal of the situation:
(a) Extensive progress was made during the 1990s, both politically and operationally, but disability has not yet obtained a prominent place on the international development agenda. This is surprising given the large and growing number of people with disabilities;
(b) There is a need for improved data on disability. Better methodologies, new tools for data collection and analysis should be developed and applied;
(c) There is also a need for each United Nations organization to make disability a higher priority;
(d) Although the United Nations and its NGO partners have supported useful activities, including joint activities between various organizations, their efforts remain fragmented at country level and lack follow-up mechanisms;
(e) Need and interest was expressed in developing a common inter-agency agenda in support of "disability-friendly" policies and programmes at national level, with defined components and inputs from each organization;
(f) Recognition and interest was expressed in working through the resident United Nations coordinator system at country level;
(g) Participants expressed an interest in facilitating inter-agency collaboration at global level, through an appropriate mechanism, without adding an additional administrative layer and impairing the mandate of each organization concerned;
(h) The possibility of creating a subcommittee on disability within the Administrative Committee on Coordination should be explored. It could serve as the inter-agency forum, which would ensure a more prominent and visible place for disability.
E. Cooperation with international non-governmental organizations
86. One of the most characteristic features of this United Nations monitoring exercise is the close cooperation with the major international NGOs in the disability field. During the drafting of the Standard Rules in the beginning of the 1990s, these international NGOs were already directly involved. I described their active participation in my report to this Commission in 1997.
87. The six organizations that responded to the invitation from the United Nations and formed the panel of experts in 1994 have played a special role within the project. It should, however, be mentioned that a number of other organizations have also actively supported and used the Rules in their work.
88. The six organizations have a network of more than 600 national affiliates. These national organizations have had an important role during my visits to countries. I have often communicated with them in preparing my visits. They have participated in discussions with governments and I have tried to involve them in the follow-up action resulting from my visits.
89. In recent reports to my office, the six organizations have informed me that they continue to use the Standard Rules actively in their work. The user guides and other educational material in connection with the Rules, which were developed during the first monitoring period, are still in use. During this second period, new conferences and seminars for organization officers and members have been organized. There are examples of organizations that have appointed special officers to coordinate the work with the Rules. Some of the organizations report that they use certain aspects of the Rules in their efforts to improve services or access.
90. The organizations also report that translation of the Rules into more national languages continues. The World Blind Union is serving its member organizations with Braille versions of the Rules in a number of languages and Inclusion International reports that the Rules are available in easy-to-read versions in several languages.
91. Finally it should be mentioned that, during the period from 1997 to 1999, the International Disability Foundation ran an advocacy and action programme on the implementation of the Standard Rules. This programme was conceived by the Foundation to create opportunities for national disability organizations to work for the implementation of the Rules. The programme has made financial and technical resources available for disability organizations in six African countries. The responsibility for each country programme is in the hands of a steering committee, composed of representatives of national disability organizations. Funds for this programme have come from the Danish International Development Agency (DANIDA) and the International Disability Foundation.
F. Promoting special dimensions
1. Children with disabilities
92. On 6 October 1997, the Committee on the Rights of the Child held a General Discussion Day in Geneva. In an outline prepared for the event, the Committee stressed that throughout history children with disabilities had been, and in many societies still were, denied access to education, family life, adequate health care, opportunities for play or for training and the right to participate in normal child activities. In spite of the fact that these children were experiencing a form of social exclusion representing a denial of their basic rights as enshrined in the Convention, their plight rarely figured high on the national or international agenda and they tended to remain invisible.
93. A number of Committee members and representatives of United Nations agencies, including the World Bank and a number of international NGOs, participated. I was invited to make a presentation from my perspective as Special Rapporteur in the field of disability policy. In my statement I made a comparison between the Convention on the Rights of the Child and the Standard Rules. I pointed to the different legal status of the two documents. I emphasized both differences and the complementarity of them. The Convention is an important statement of principles protecting the rights of all children, including children with disabilities. The Standard Rules is a whole document on disability policy, containing a much higher degree of specification and giving more guidance on what should be done and how it should be done. Measures to combat exclusion and bad conditions must be taken in two main areas - support to the individual and measures to create accessibility. I further pointed out that the Convention is rather vague in its support for the accessibility dimension.
94. Finally, I made the following suggestions for more developed cooperation between myself, as Special Rapporteur, and the Committee:
(a) Discussion of further action concerning children with disabilities on the basis of an analysis of reports from Member States on the implementation of the Convention;
(b) Further surveys on the implementation of the Standard Rules should be operated in consultation with the Committee on the Rights of the Child;
(c) Cooperation to eliminate discrimination of children with disabilities in mainstream education programmes;
(d) Cooperation to develop information about good practice;
(e) Consideration of the possibility of involving the panel of experts, established as part of the monitoring mechanism in connection with the Standard Rules.
95. At its 419th meeting, the Committee on the Rights of the Child adopted a number of key issues and recommendations, and, inter alia, brought up the issue of establishing a working group to prepare a plan of action.
96. Acting on the recommendation to consider a working group, Disability Awareness in Action (a collaborative project between a number of disability organizations) took the initiative of establishing a working group to consider further the many issues brought up during the general discussion day. The working group consists of international organizations of disabled people (World Blind Union, World Federation of the Deaf, Inclusion International and Disabled Peoples' International), organizations working for the rights of the child (International Save the Children Alliance, Child Rights Centre) and one member of the Committee on the Rights of the Child. I have agreed to chair the working group.
97. The group has held two meetings during 1999. Among the various activities discussed in the working group, the following might be mentioned:
(a) Generally, the main purpose of the working group is to provide more information and better tools for monitoring the situation of disabled children within the work of the Committee on the Rights of the Child;
(b) The group considers the possibility of organizing four regional seminars to collect more information about the situation and to give more visibility in those regions to children with disabilities;
(c) A letter to United Nations agencies to find out about their planned policies concerning children with disabilities;
(d) A discussion has started within the working group concerning the possibility of drafting a general comment to be considered by the Committee on the Rights of the Child;
(e) The issue of collecting examples of good practice has been raised and the group will find ways of promoting this.
2. Gender aspects
98. The Beijing Platform for Action includes a number of suggestions and references concerning women and girls with disabilities. In the follow-up work in connection with this document, carried out by the Commission on the Status of Women, representatives of women in the international disability NGOs have participated each year since 1996. As a result, all reports from the Commission thus far have included references to women with disabilities.
99. In 1997 a leadership seminar on gender issues was organized in Sweden with participants from many developing countries. One main objective was awareness-raising and learning to identify discrimination.
100. In my statement I analysed the Standard Rules from a gender perspective as outlined below.
101. The general presentation in the Rules is done with the understanding that the suggested guidelines and policies concern all people with disabilities, irrespective of race, gender or age. This interpretation follows the tradition used in the field of human rights.
102. There are a few direct references to the gender dimension. The most general one is the sentence, in paragraph 15 of the introduction: "The purpose of the Rules is to ensure that girls, boys, women and men with disabilities, as members of their societies, may exercise the same rights and obligations as others".
103. The gender perspective is mentioned in some other instances in the introduction and the preamble. In Rule 4 on support services, Rule 6 on education and Rule 9 on family life and personal integrity special attention is drawn to the needs of girls and women with disabilities.
104. The Standard Rules must always be related to the concrete situation in each country. In so doing, there is a need for interpretation and for placing emphasis or focus on certain conditions or circumstances. It is, for instance, often necessary to emphasize the need to include special measures for disabled women in adult education, medical care, rehabilitation and the provision of technical aids.
105. It is very important to combine the provisions of the Standard Rules and those contained in the Convention on the Elimination of All Forms of Discrimination against Women. This possibility must be further developed through cooperation between the appropriate bodies within the United Nations, the specialized agencies, international NGOs and all concerned entities at the national level.
106. Finally, in reply to the question on the gender dimension, of course, one would have wished for a more clearly spelt out gender dimension in the Standard Rules. However, by using all the different means that I have pointed out, I am sure that we can also make it a strong and useful tool in the struggle for empowerment and full participation by disabled women in their societies.
3. Persons with developmental and psychiatric disabilities
107. In its resolution 35/2, the Commission for Social Development emphasized the need to study the dimension of human rights for persons with developmental and psychiatric disabilities. The reason for particularly focussing on the situation of these groups is, of course, that they are among the most neglected and marginalized in society. There are many similarities in the situation for persons with developmental and psychiatric disabilities. Both groups have often been hidden away, either in families or in institutions, and affected by negative attitudes and prejudice.
108. In my second global survey on the implementation of the Standard Rules, there was a section on the protection of the human rights of disabled people. One general conclusion drawn from this investigation is that there are serious problems in the human rights area, for instance in important fields such as the right to vote and stand for election, the right to appear before a court of law and the right to marriage and to property. Obviously the people most affected were those with developmental and psychiatric disabilities.
109. However, in the work for the rights of these two groups there are also differences. In the field of developmental disabilities, there is a strong and well developed world organization - Inclusion International. This organization effectively advocates for the rights of persons with developmental disabilities and conducts many different projects around the world to improve the situation both in developing countries and in countries in transition. There are programmes to mobilize families in so-called parent action groups. Community-based rehabilitation is used to develop family support in order for families to be able to keep children with developmental disabilities at home. The issue of improving the situation of people with developmental disabilities living in large institutions is an issue in many different countries. One way to handle this is to develop family support as an alternative to admission to such institutions. Another way is to improve the living conditions, materially and socially, for the people living in those institutions.
110. During this second period of monitoring I have participated in discussions concerning the situation of persons with developmental disabilities in several ways. I have been invited to attend conferences held by Inclusion International and have worked with its representatives in a number of countries, often in seminars with Governments and national organizations.
111. It has been much more difficult to find forums for the discussion of matters concerning persons with psychiatric disabilities. After the Panel meeting in May 1998, I discussed with representatives of Psychiatric Users how to bring the rights of people with psychiatric disabilities more into focus in my work. We identified two major opportunities, which were both scheduled for September 1999. One was a conference in Chennai, India, which was one of the first international initiatives where the situation of people with disabilities from mental illness was discussed in the light of the Standard Rules. The other event was the Congress of the World Federation for Mental Health where it was possible to get a number of users together to discuss how to develop a world organization of psychiatric users.
112. In my statement at the Chennai conference I commented on what the international community had to offer in the form of guidelines for improving the living conditions of persons with psychiatric disabilities. The Principles for the Protection of Persons with Mental Illness and Improvement of Mental Health Care, contained in the annex to General Assembly resolution 46/119 of 17 December 1991, provides clear guidelines concerning the protection of fundamental rights and freedoms of persons with mental illness. It also provides concrete guidelines for the establishment of mental health facilities and care, although some users do not agree on the recommendations concerning involuntary treatment and detention.
113. In the area of measures for the active participation of people with psychiatric disabilities in the societies they belong to, the document does not give any concrete guidance. In our work for this group it therefore seems necessary to use both these principles and the Standard Rules as a basis.
114. In the Standard Rules all recommendations and guidelines are valid for all groups of disabled people. The concept of disability, which is applied in the Rules, makes this quite clear. Let me quote the following from paragraph 17 of the introduction: "The term ... disability - summarizes a great number of different functional limitations occurring in any population in any country of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness. Such impairments, conditions or illnesses may be permanent or transitory in nature".
115. It is obvious that the recommendations and guidelines of the Standard Rules are more concrete concerning other groups than mentally disabled people. Actually, there are few direct references to people with mental disabilities in the Rules.
116. At the Congress of the World Federation for Mental Health held in Chile in September 1999, a number of users gathered to prepare a plan of action for the establishment of a world organization with stronger representation than today. According to this plan, preparations have been made to mobilize users and survivors all over the world. The intention is to hold the founding meeting of this new world organization in December 2001.
