Monitoring the implementation of the Standard Rules on
Final Report of the Special Rapporteur
III. Observations and conclusions
A. The Standard Rules document
117. It is obvious that more progress in policy development and legislation has taken place in the 1990s than in earlier decades. It is also evident that the progress during the last 10 years is clearly connected with the International Year of Disabled Persons (1981), the World Programme of Action (1982) and the political process initiated at that time. A considerable number of countries throughout the world have adopted new legislation and developed national policies in harmony with international guidelines. In this process, the Standard Rules have played a significant role. Above all the Standard Rules have clearly defined the role of the State in implementing measures towards full participation and equal opportunities, strengthened the human rights dimensions and provided an active monitoring mechanism within the United Nations system.
118. The Standard Rules document has many merits. It is concise and provides a concentrated presentation of guidelines in a number of areas. These guidelines have been used in a great number of countries in many different ways. The fact that the recommendations are at the international level has created room for national application and adjustment to regional and local circumstances.
119. There are, however, shortcomings in the Standard Rules document. Some dimensions of disability policy have not been treated sufficiently. This is true concerning children with disabilities, in the gender dimension and for certain groups, mainly persons with developmental and psychiatric disabilities. It has been pointed out that the Rules do not include a strategy for improving living conditions of disabled people in regions with extreme poverty. Disabled persons in refugee or emergency situations are other areas that have not been dealt with. As I pointed out in my previous report to the Commission for Social Development (A/52/56) the whole area of housing has not been included. Among other things this means that there is no guidance concerning the handling of the institutions where a great number of persons with disabilities still spend their whole lives under miserable circumstances. The important events in the human rights area during the 1990s should perhaps also be more clearly reflected. (See paras. 157-160 below)
120. One of the most prominent features of the Standard Rules is the monitoring mechanism. The terms of reference for this function, presented in section IV of the document, are far reaching and could motivate considerable resources for implementation. In point of fact, the available resources have been limited, although it must be emphasized that the funds made available for this project through extrabudgetary means have been more generous than for most other projects in the field of social development. The way the purpose of the monitoring is set out, emphasis should be on promotion, assistance and assessment. Within available resources, I have tried to include activities in all these areas.
B. The role of the Special Rapporteur
121. In my role as Special Rapporteur I have performed several different functions. I have introduced the Standard Rules at a great number of both international and national conferences and seminars. On such occasions I have explained the background of the Rules and their relation to other United Nations documents. One important task during country visits has been to assist in interpreting the meaning of the Rules and in finding relevant applications in given situations. In some cases Governments have asked for advice concerning how to proceed in certain areas. In other cases our discussions have concerned priorities.
122. Many people I have worked with have told me that one important function of my work has been to provide a catalytical function. I have brought Governments and other concerned parties together for common discussions, I have been instrumental in getting disability onto the agenda of Governments and I have sometimes initiated dialogues between the organizations concerned.
123. The media coverage during my visits has been of different character. In some cases my visit has raised a lot of attention while on other visits very little has been said or written.
124. It is obvious that my personal background, a disabled person with experience as a parliamentarian and Government minister, has been important, especially in my contacts with Government representatives.
125. As my visits have been short, it has always been important to indicate clearly how agreements or new ideas should be followed up. In most cases this has been taken care of by the different actors in the country. In some cases I have sent follow-up letters, summarizing what has been agreed upon and pointing out things that should be done. There are cases where these letters have become short-term tools for implementation.
126. As mentioned earlier, I have assessed the level of implementation in Member States through the distribution of questionnaires to both Governments and national NGOs. These monitoring surveys have concentrated on a number of Rules. In this way, the substance of 10 of the 22 Rules have been explored. The first survey consisted of a few general questions about how Governments had received the Standard Rules. Thirty-eight Governments replied. In the second and the third surveys, the number of Governments responding has been relatively high (83 and 104). In this way we have assembled a fairly large volume of information, which I have been able to use in my work and which is also available for follow-up by United Nations agencies and others. The fact that national NGOs have also replied to these surveys (165 in the second and 115 in the third survey) has brought an additional dimension. It is obvious that organizations and Governments often do not make the same assessment of the situation. This could form the basis for further national discussions.
C. The contribution of non-governmental organizations
127. One of the great assets of this monitoring mechanism is the close cooperation with the major international organizations in the disability field. This has been important in two different ways. The panel of experts, established by these organizations, has played an active consultative role in support of my work. The organizations behind the panel also provide an extensive international network with more than 600 national affiliates in about 160 Member States. I have the impression that this form of close cooperation between the United Nations and international NGOs is unique and could serve as a model for other areas. Above all it is important to ensure that this form of cooperation will continue as part of a future monitoring mechanism.
128. The panel organizations have issued information material and user guidelines to national members to facilitate the use of the Rules. Several workshops and training seminars have been organized regionally, often co-funded by the United Nations Voluntary Fund on Disability. The Standard Rules and their implementation have continued to be an item on the agenda of the international congresses of the panel organizations.
129. During my visits to various countries, I have held separate meetings with the representatives of the organizations to find out how they view the situation. They have often also participated in my discussions with Governments. To keep the organizations representing the interests of persons with disabilities involved and informed has often proved to be the best guarantee for keeping disability on the national agenda and for the follow-up of agreements and new ideas.
D. Response by Member States
130. How have Member States responded to the Standard Rules and to our monitoring efforts? My general impression is that the Rules are well known by disability experts in most Government administrations around the world and that they are being widely used in a large number of countries. They are being used to create new legislation, as a basis for plans of action and sometimes as an evaluation tool to assess the situation. Conferences and training seminars have been organized to introduce the contents of the Rules or to discuss their application in certain areas.
131. In my discussions with Governments a great number of different subjects have been raised. On occasion, Governments may have been planning to formulate a new disability policy, but more often they have been looking for a strategy to implement a new policy or legislation. Often Governments have wanted to know how other countries have used the Standard Rules or how they have solved a certain problem. One issue, which tends to come up frequently, concerns the distribution of responsibility. Oftentimes, when Governments adopt the principle of inclusion or mainstreaming, the ministries responsible for the implementation of the policy run into conflicts with other ministries and public institutions, that are reluctant to accept disability concerns as their responsibility. The notion that disability is a concern solely for disability specialists is deeply rooted worldwide. Other important issues that have formed the basis for dialogue are: cooperation and coordination issues; moving from an old system into the application of modern principles; how to change negative attitudes towards disability among the general population; de-institutionalization; and issues in areas such as accessibility and education.
132. The response of Member States to our monitoring could also be expressed in terms of providing information to our global surveys. More than 100 Governments have provided information on a number of aspects of implementation. The extensive information received can be used for various follow-up actions. One such area is the serious human rights problems revealed by the second global survey. This accumulated information has also made it possible to describe certain global phenomena, such as the establishment of structures for cooperation between Governments and national NGOs, common serious problems in lack of access to education and the fact that disability measures are seldom included in general programmes of development cooperation. All those Governments that have responded to our extensive questionnaires have made considerable efforts in providing information on a number of areas. Naturally this also has had an awareness-raising effect in government administrations. Unfortunately, there are a number of countries, in most cases small and poor countries, from which we have no information. I have not been invited to visit them and they have not responded to any of our surveys. Probably the main reason for not participating in our monitoring exercise is a lack of resources or knowledge about disability matters. The fact that the Special Rapporteur only visits countries upon request has naturally also been a limiting factor in this context.
E. Outcome of the third survey
133. The results presented in this survey must be viewed from the fact that 77 of the 104 responding Member States, by a classification according to socio-economic criteria, are developing countries. From this perspective a strikingly high proportion of Governments indicated the existence of medical services (99 countries of 104 responding), rehabilitation (73 of 102) and the provision of devices and equipment (87 of 96) to persons with disabilities. This is an encouraging result.
134. The fact that services exist in a country and that there is government involvement signifies that this kind of programme has been established, that the national competence in the field can grow and that thereby a foundation has been laid for further development. However, it should be emphasized that, affirmative replies notwithstanding, very different situations may exist. Countries with full coverage of existing needs and countries where a national centre has been established, covering perhaps 1 or 2 percent of the actual need, may both indicate that a national programme exists.
135. The full report prepared by WHO will hopefully make a more profound analysis possible, especially as WHO will be in a position to take replies from both governments and national NGOs into account.
136. A follow-up study on the availability of services in a selected number of countries could increase our understanding of the situation.
137. It is interesting to observe that community-based rehabilitation and other forms of decentralized services exist in so many countries.
138. Concerning the provision of devices and equipment for disabled people, it is encouraging to note that a majority of countries supply services to a large number of defined groups.
139. Persons with disabilities, their families and their organizations are obviously involved in various aspects of providing services in a number of countries, even if the indicated frequencies are considerably lower than for the existence of services.
140. Finally, since the right to influence and involvement by persons with disabilities and their organizations is a matter of priority in the Standard Rules, measures to strengthen and ensure this influence should be taken by more Governments.
141. Both the adoption of the Standard Rules and developments in the human rights area has increased the pressure for modernized legislation. A considerable number of countries have developed their legislation concerning persons with disabilities. Some have included disability in an anti-discrimination clause in their constitutions. This has, in most cases, been done in connection with a major revision of the constitution. In the vast majority of cases, countries have chosen to establish special laws on disability and not to integrate disability concerns into general legislation. There are great variations both in form and subjects covered under these new laws. There are also great variations in the area of enforcement mechanisms. One common challenge is to define the group or groups of people entitled to enjoy the various provisions of the law. As far as I know, the first initiative to analyse the legal developments that have taken place during the 1990s on a global basis was the United Nations Consultative Expert Group Meeting on International Norms and Standards Relating to Disability held at Berkeley from December 8 to 12 1998. The report of the meeting included a number of valuable recommendations and suggestions both in relation to the development of national legislation and concerning international cooperation. The initiative to compile national legislation to create a library on international norms and standards taken by the Disability Programme within the Secretariat is highly commendable.
G. Human rights development
142. As discussed in paragraphs 63 to 70 above, significant progress has recently taken place in the area of human rights and disability. The essence of this development is the recognition that disability and disability-related problems is a concern for the United Nations human rights monitoring system. This is probably the most important progress for the cause of disabled persons in recent years. To use this opportunity maximally, the challenge now is to develop awareness and competence for this new task within the United Nations monitoring system, in Government administration and among NGOs. As far as I know, little has happened in this area since the adoption of resolution 1998/31 by the Commission on Human Rights. Therefore, urgent need for follow-up action in this field still exists.
H. Children with disabilities
143. Some positive developments have taken place during this second monitoring period. The discussion day held in October 1997, organized by the Committee on the Rights of the Child, resulted in increased awareness of the many dimensions of this issue and stimulated the Committee to adopt a number of recommendations for further action. The working group established by NGOs in the fields of disability and children's rights in 1999 to follow up on some of these recommendations has the potential to provide valuable information and knowledge in this field.
144. Many United Nations agencies, in particular UNICEF, UNESCO, WHO and ILO, have programmes concerning children with disabilities. It is important that these efforts are well coordinated and that the acting agencies make sure that a holistic approach can be maintained and that no important aspect is left out.
145. I notice that there is a growing involvement in the situation of disabled children on the part of the NGOs working in the disability field. It is necessary, however, that this involvement continue to expand. The newly created working group may contribute to such growth.
I. Gender aspects
146. It is important that the disability-related gender issues, as far as possible, are dealt with as a natural part of gender analysis in different areas. It is encouraging that, since 1997, the Commission on the Status of Women has included disability aspects in its work in different areas.
147. However, more needs to be done to improve the living conditions of girls and women with disabilities. To a large extent, the task is now to increase awareness and knowledge about the specific problems and discrimination faced by girls and women with disabilities. Information about these problems and the ability to handle them must be built in both in gender and disability programmes.
148. Some United Nations agencies have started work in this field and have the potential to play an important role in the promotion of these issues globally. International disability organizations and their national affiliates have a crucial role to play both in awareness-raising among their own members and in building up international support for the struggle for improved conditions for women and girls with disabilities. More needs to be done in these areas.
J. Persons with developmental and psychiatric disabilities
149. Both these groups are among the most marginalized in our societies. In most communities they and their families meet negative attitudes and prejudice. Their existence must be recognized in all countries and their needs made known and visible. Inclusion International is making an important contribution to mobilize parents and professionals of people with developmental disabilities in the struggle for better conditions. These efforts must be supported so that they can be continued and strengthened.
150. In the case of persons with psychiatric disabilities, there is no worldwide organization which represents their interests alone. One of the most urgent needs is to support the attempts made by small groups of psychiatric users to organize and create a voice of their own in more countries. The plan to develop the World Federation of Psychiatric Survivors and Users into a strong and representative world organization must get support and recognition.
151. For both groups the issue of how to handle the large institutions in many countries is crucial. It involves both the issue of how to improve the living conditions for those who already live in institutions and what measures should be taken to avoid institutionalization of individuals in the future. It is therefore equally necessary to develop support services and programmes for both groups to make it possible to live in society with a developmental or a psychiatric disability. As far as I have been able to find out, the United Nations and its agencies have not adopted policy in this important area.
152. The United Nations document entitled "Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care" provides clear and progressive guidelines for the treatment and care for persons with mental illness. It would be interesting to study how far Member States have come in their implementation of these guidelines. To my knowledge, no such follow-up study has been made since the adoption of the resolution.
K. Future involvement by the United Nations
153. My mandate as Special Rapporteur ends in August 2000. Consequently, the Commission for Social Development has to consider at its thirty-eighth session if and how this monitoring exercise should continue. Important progress has been made since the adoption of the Standard Rules. Many more Governments have engaged themselves in policy development and created national structures for planning and coordination in the disability field. Disability will be a much more prominent issue in the area of human rights. A structure for cooperation between the United Nations system and international NGOs in the disability field has developed. The Standard Rules have proved to be a useful tool in the development of government policies and legislation.
154. This new development has also led to increased awareness and new challenges. How can we make use of the new situation in the field of human rights? What should be done about the shortcomings of the Standard Rules document? What action should be taken to improve the situation of persons with developmental and psychiatric disabilities? How could the present cooperation between the United Nations system and international NGOs be preserved and developed in the future?
155. When discussing the future monitoring of the Standard Rules it is necessary to take new developments into account. I have discussed these issues with the Panel of Experts and I have received a number of valuable responses to a letter concerning future options that I circulated in the beginning of 1999.
1. Strengthening the United Nations documents on disability
156. The Standard Rules are being used in a large number of countries. We also know that there are shortcomings and gaps in the document, which should be corrected. I have specified a number of such areas in paragraphs 157 to 160 of the present report. The Commission for Social Development should consider forms for complementing and developing the Rules to cover new or unaddressed areas in the disability field.
157. Ten years ago the United Nations General Assembly rejected proposals for a convention on the rights of persons with disabilities. The international movement of disabled people never fully accepted the reasons for that decision. Many find it difficult to see the difference in principle between a special convention in this area as compared to other areas where conventions already exist. Since there have been significant developments in national policies and laws worldwide during these 10 years, it is possible that a larger number of governments would now accept the elaboration of a convention. The question is, however, if the number of supportive governments would be large enough to make the development of a convention really meaningful.
158. One crucial issue in this context is what level of specification would be chosen in a convention. One idea could be to develop the Standard Rules and to build a convention on a principal basis and link it to the Rules.
159. The development in the human rights area calls for further initiatives. One option, which in my opinion should be considered by the Commission on Human Rights, is to elaborate special protocols or comments developing the different aspects of human rights concerns for persons with disabilities. The purpose of this should be to improve the standards of monitoring. At least temporarily this could be an alternative to elaborating a special convention.
2. Options for monitoring
160. The special monitoring mechanism, which was constructed for monitoring the implementation of the Standard Rules, includes promotion of the Rules, assistance to Member States and assessment of the situation. My experience is that this is a very useful combination of tasks. It would therefore not be appropriate to reduce the monitoring to a more passive function of observing what happens. Based on my experience, I support a continuation of a monitoring mechanism with the same basic functions.
161. As far as I can understand there are two main options if monitoring is to be continued. One is to integrate the function into the Secretariat and the other is to continue in the same manner as before. The present structure, with a Panel of Experts appointed by international disability organizations, should be maintained in connection with either of these options. A third possibility, which is interesting but probably too demanding in terms of resources, would be to add to a global function of regional rapporteurs who would do most of the travelling.
162. If the monitoring is to be carried out in a meaningful and effective manner, there has to be sufficient economic resources. It would, of course, be an advantage, if funds could be allocated through regular sources. If not, extrabudgetary means must be added.
163. As I have mentioned in the section on human rights, I have been invited to share my experience with the Commission on Human Rights. In that connection it has been suggested that a function serving both the Commission on Human Rights and the Commission for Social Development should be considered. I do not know if this is technically possible or if it has occurred before. As an expression of the need to use a holistic approach and create close cooperation between different United Nations entities in the same field, I think it is interesting. Most important of all in this context is, however, that mechanisms are established so that from now on disability can be monitored both from a human rights and a social development perspective.
3. Improved coordination within the United Nations system
164. It is clearly illustrated both in the report by the Secretary-General to the fifty-fourth session of the General Assembly and in the present report that many United Nations agencies have extensive programmes in the disability field. There is a need for improved coordination both on the country level and internationally between these agencies. I raised this issue in my previous report and suggested that the formal inter-agency mechanism, which existed during the Decade of Disabled Persons (1983-1992), should be re-established on a regular footing. As more actors have entered the disability field and as more activities are being carried out, there is a strong need for better coordination of efforts, exchange of experience and sharing of information. In the absence of an initiative for a permanent solution, agencies hold informal consultations on an annual basis. At the meeting of agencies and NGOs in June 1999, it was stated that there is a need to facilitate inter-agency collaboration at global level, through an appropriate mechanism, without adding an additional administrative layer and impairing the mandate of each organization concerned. This meeting also suggested that the possibility of creating a subcommittee on disability under the Administrative Committee on Coordination, which would ensure a more prominent and visible profile for disability, should be explored.
4. Awareness-raising and campaigns
165. In the discussion of future possibilities suggestions have been made for both a second International Year and a second Decade of Disabled Persons. In this context, the possibility of using the regional commissions of the United Nations and other regional intergovernmental bodies for such initiatives has been suggested. One good example of what can be achieved in this way is the Decade of Disabled Persons (1993-2002) of the Economic and Social Commission for Asia and the Pacific. There are also proposals for regional decades in Africa and Europe. In the American region, the Organization of American States has recently adopted a Convention on the Rights of Disabled People. It is expected that this will be followed by regional implementation efforts.
166. Taking all these regional initiatives into account, I think that there is no reason to initiate any global campaigns at the present time. The role of the United Nations should rather be to support the regional initiatives in all possible ways and to make efforts to coordinate and create opportunities for the exchange of information.