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Promoting the self-determination of people with disabilities
Government Action on Disability Policy
A Global Survey
Part I
© Dimitris Michailakis 1997
Organizations of Persons With DisabilitiesAccording to Rule 18, the work in every country concerning the implementation of the Standard Rules should be carried out in co-operation between national authorities and organizations of persons with disabilities. The right to represent and the advisory role given to organizations of persons with disabilities are based on the objective that equalization of opportunities should imply that decisions are not be taken by others. Accordingly the active involvement in the integration process of the groups concerned is, at the same time, a prerequisite for and a symbol of its success. In more general terms, the active involvement is a part of the human rights and democracy approach. It is not sufficient only advocating that everyone should participate in decision-making. Genuine participation encompasses the formulation of projects, and their execution and evaluation. Lack of involvement by those concerned and their organizations is not a tiny matter. Without the co-operation with organizations of persons with disabilities it is very likely that policy makers will misinterpret the directives/guidelines.
Organizations of persons with disabilities should be involved because of their ability to provide decision-makers with insight into and knowledge of the problems, needs and requirements of people with disabilities. Organizations of persons with disabilities are a point of crystallisation for expertise based on experience: the expertise on living with a disability, generated by people with disabilities. Participation of organizations of persons with disabilities in policy-formulation and decision-making of the national plans of action, is also important in order to ensure the implementation of the programmes on the equalization of opportunities. Programmes are more easily implemented when obtaining the organizations' full support and participation. The actual implementation of a programme therefore depends on the interest and co-operation of people who are active in organizations, and hence in much closer contact with the problems connected with a specific disability.
As regards the existence of a national umbrella organization of organizations of persons with disabilities (question 20) 64 countries out of 83 providing information on this issue are reporting the existence of a national umbrella organization. 19 countries reported there being no umbrella organization. In countries with an national umbrella organization, most organizations of persons with disabilities are being represented.
Table 20 (Question No. 20)
National umbrella organization
Total 83, No answer 2
National umbrella organization Frequency Valid Percent Countries with umbrella organization 64 77,1 Countries with no umbrella organization 19 22,9
Regarding the existence of legal provisions mandating the representatives of persons with disabilities to participate in policy making and to work with Governmental institutions the results are less encouraging. In 32 countries out of 81 countries providing information, there are no such legal provisions. In 49 countries there are legal provisions mandating the representatives of disabled persons to participate in policy making. It is necessary to recognize that the organizations of persons with disabilities should have a role in all efforts relating to their participation in development. This role should be carried out at all levels: national, regional and local. Democracy, among other things, implies fair representation and the possibility to influence processes affecting the lives of disabled persons.
Table 21 (Question 21)
Participation in policy making
Total 81, No answer 4
Participation in policy-making Frequency Valid Percent Countries reporting participation 49 60,5 Countries reporting no participation 32 39,5
According to Rule 18, in the formulation of disability policy, both the directives/guidelines from the responsible authorities and the views of the organizations of persons with disabilities have to be taken into account. Question 22 aims at finding out, if and how often the views of organizations of persons with disabilities are taken into account. The information from this survey shows that in 37 countries out of 80 providing information on this issue, organizations are always consulted during the preparation of laws, regulations and/or guidelines with a disability aspect, in 24 countries their views are often taken into account, in 18 their views are sometimes taken into account and in one country the views of the organizations are never taken into account.
Table 22 (Question 22)
Consultations with organizations of persons with disabilities
Total 80, No answer 5
Their views are taken into account Frequency Valid Percent Never 1 1,3 Sometimes 18 22,5 Often 24 30,0 Always 37 46,3
As the results in question 23 shows, when the views of the organizations are taken into account, consultations most often take place at the national level - i.e. in 71 countries out of 80 providing information on this issue - less often at the local level - i.e. in 38 countries - and least often at the regional level, i.e. in 35 countries. According to the Standard Rules, measures have to be taken enabling persons with disabilities to participate as citizens with full rights in the decision-making process, of the planning, implementation, monitoring and evaluation of policies and programmes at all levels.
Table 23 (Question 23)
Level of consultations
Total 80, No answer 5
Level of consultations Frequency Valid Percent National 71 88,8 Regional 35 43,8 Local 38 47,5
In question 24 the aim was to find out whether the Government gives any support and what kind of support is given. As Table 24 shows in 66 countries out of 80 providing information on this issue, organizations of persons with disabilities receive financial support from their Government. In 39 countries organizations receive financial and/or organizational/logistic support, while in 5 countries organizations do not receive any support at all.
Table 24 (Question 24)
Support to organizations of disabled people
Total 80, No answer 5
Kind of support Frequency Valid Percent Financial 66 82,5 Organizational/logistic 39 48,8 No support at all 5 6,3
Needless to say, the extent of the financial support varies between different countries. But, of course, even a small support may have significant symbolic effects.
Question 25 tried to measure the extent in which persons with disabilities participate in political and public life. Respondents were asked to evaluate, in a scale ranging from 1 to 5, the extent to which, according to their judgement, persons with disabilities participate in five different areas of public life: Government, legislature, judicial authorities, political parties and NGO's. The level of participation could be evaluated on a scale ranging from a very limited extent to a great extent. Table 25 displays a clear and traditional tendency, namely that persons with disabilities participate to a very limited extent in Government, legislature and judicial authorities but to a great extent in NGO's. Maybe the participation in political parties - with the highest score "to some extent" - is a new feature. The tendency - foremost in the advanced market economies - among political parties to take an interest in disability issues could be a result of this participation. Thus, persons with disabilities are underrepresented everywhere among decision-makers. They are rarely represented in government, legislature, in judicial authorities or in political parties.
Table 25 (Question 25)
Participation in political and public life
1 and 2 = limited extent
Areas of political and public life Number of countries reporting participation Limited Some Great Government 45 14 10 Legislature 44 17 7 Judiciary 51 13 5 Political parties 39 21 9 NGO's 10 10 53
3 = some extent
4 and 5 = great extent
Question 26 aimed at pointing out the effective role of the organizations of persons with disabilities. As Table 26 shows, the organizations of disabled people most often contribute to public awareness, to mobilize persons with disabilities and to advocate rights and improved services. Less often their role is to promote/organize income generating activities.
Table 26 (Question 26)
The role of organizations
Total 80, No answer 5
Areas organizations are involved Frequency Valid Percent Advocating rights and improved services 70 87,5 Mobilize persons with disabilities 71 88,8 Identify needs and priorities 68 85,0 Participate in the planning, implementation etc. 57 71,3 Contribute to public awareness 73 91,3 Provide services 60 75,0 Promote/organize income generating activities 48 60,0 Rule 17 states that co-ordination of work should be ensured, for the widespread and sustained improvements in the position of persons with disabilities. In addition, co-ordinated and co-operative efforts by Governments and disabled persons' own organizations should be promoted. The most common way of achieving co-ordination between the different Government agencies responsible for various aspects of equalization of opportunities, is by means of a national disability council or another similar body. The council's members include representatives of both voluntary organizations and Government departments and agencies responsible for providing services. Most of these national disability councils are advisory bodies. In addition to the national council, in a number of countries, the non-Governmental organizations, have established such a council or a central committee in order to co-ordinate their activities.
In questions 27 and 28 the aim was to find out the existence of a national co-ordinating committee or a similar body as well as its destination of reporting. The results of the survey are less encouraging. 62 countries out of 84 providing information on this issue report that a co-ordinating committee or a similar body has been established, while as many as 22 countries (26%) report that not having a national co-ordinating committee or a similar body.
Table 27 (Question 27)
Co-ordinating committee
Total 84, No answer 1
Co-ordinating committee Frequency Valid Percent Countries with a co-ordinating committee 62 73,8 Countries with no co-ordinating committee 22 26,2
Regarding the authority to which the co-ordinating committee submits its reports, the co-ordinating committee in the majority of the countries, 39 out of 57 providing information on this issue, is reporting to the Ministry of Social Affairs/other Ministry. In 12 countries the co-ordinating committee is reporting to the Prime Minister's Office, while in 6 countries the co-ordinating committee is reporting to other authorities.
Table 28 (Question 28)
What authority the co-ordinating committee is reporting to
Total 79, No answer 6
The co-ordinating committee is reporting to: Frequency Valid Percent A particular Ministry 39 68,4 Prime Minister's office 12 21,1 Other 6 10,5 Countries with no co-ordinating committee 22 26,2
In question 29 the aim was to find out the organizations and/or authorities being represented in the co-ordinating committee. As Table 29 shows, in a majority of the countries organizations of persons with disabilities are represented in the co-ordinating committees. Representatives from the private sector are more rarely included in the co-ordinating committees.
Table 29 (Question 29)
Representation in the co-ordinating committee
Total 81, No answer 4
Representatives of: Frequency Valid Percent Ministries 54 90,0 Organizations of persons with disabilities 50 83,3 Other NGO's 33 55,0 Private sector 25 41,7 Countries with no co-ordinating committee 22 26,2
With questions 30 and 31 the aim was to find whether the co-ordinating committee by the Government is expected to participate in policy development and to perform other tasks, for instance to be involved in evaluation, provide services etc. As Table 30 shows, in most of the countries - 51 out of 55 providing information on this issue - the co-ordinating committee is in fact expected to participate in policy-development.
Table 30 (Question 30)
Participation in policy-development
Total 76, No answer 9
Involvement of the co-ordinating committee Frequency Valid Percent Participation in policy development 51 92,7 No participation in policy-development 4 7,3 Countries with no co-ordinating committee 22 26,2
As Table 31 shows in 42 countries the co-ordinating committee is involved in performance of other tasks. Only 11 countries of 53 providing information on this issue the co-ordinating committee is not expected to perform other tasks.
Table 31 (Question 31)
Participation in performance of other tasks
Total 74, No answer 11
Involvement of the co-ordinating committee Frequency Valid Percent Reporting performance of other tasks 42 79,2 Reporting no performance of other tasks 11 20,8 Countries with no co-ordinating committee 22 26,2
Question 32 asks for the effects of the establishment of the co-ordinating committee. As Table 32 shows, the fields where the establishment of the co-ordinating committee has had great effects include: improved co-ordination of measures/programmes in the disability field and better dialogue in the disability field. The fields where establishment has had less effect include: more accurate planning and more effective use of resources. 9 countries out of 59 providing information on this issue reported that it being too soon for an assessment.
Table 32 (Question 32)
Effects of the establishment of the co-ordinating committee
Total 76, No answer 9
Effects Frequency Valid Percent Improved co-ordination of measures/programmes 47 79,7 Improved legislation 38 64,4 Improved integration of responsibility 37 62,7 Better dialogue in the disability field 45 76,3 More accurate planning 25 42,4 More effective use of resources 31 52,5 Improved promotion of public awareness 40 67,8 Too early for assessment 9 15,3 Countries with no co-ordinating committee 22 26,2
The last question asks for the effects of the Rules on the approach to disability policy. 50 countries out of 62 providing information on this issue reported that the adoption of the Rules has lead to a rethinking of the approach to disability policy and 9 reported that the adoption of the Rules has not lead to a rethinking of the approach to disability policy. 23 countries did not answer the question and 3 countries reported that it is too early for an assessment of the effects of the Standard Rules.
Table 33 (Question 33)
Effects of the adoption of the Standard Rules
Total 62, No answer 23
The effects of the Standard Rules Frequency Valid Percent Countries reporting rethinking 50 80,6 Countries reporting no rethinking 9 14,5 Too early for assessment 3 4,8
When a Government in its answer states that the adoption of the Rules has not lead to a rethinking, it does not necessarily mean the approach to disability being in conflict with the philosophy expressed in the Rules. It can also mean that the guidelines in the Standard Rules are very similar to these of the country's disability policy. When this is the case (Finland, China, Austria, Thailand) the reply was classified together with these countries reporting a rethinking, the purpose of this survey being more important to knowing if the policy of a country is compatible with the Rules. Nonetheless, the fact that so many countries did not answer this question - a key in the evaluation of the implementation process of the Standard Rules - remains to be explained. In my view this could reflect an attitude of the nation state, namely the wish to show its independence from whatever imperatives and pressures from outside, even from the UN or some other international organization (compare to what extent the Standard Rules has resulted in new legislation). The nation state is by the very definition a system with its own rules and it own laws. This points towards the dilemma of the United Nations - to partake in the international community, but as a nation state.
The definition of who has a disability or who has not varies from country to country; to a great extent there is a pattern according to the level of the socio-economic development. In the traditional society, there are only four kinds of disability (physical disability, blindness, deafness and mental retardation). With a more complicated society where everybody is more and more dependent of being asserted certain specific rights, thereby obtaining social services and other benefits, the tendency is towards an extended concept of disability.
The survey shows that the extent of the protection of the rights of persons with disabilities and the scope of law varies enormously among countries. Moreover, even when the rights of persons with disabilities are protected by law, effective mechanisms/arrangements have not necessarily been adopted in order to ensure the de facto protection and respect of those rights. There is, however, no country reporting no laws at all aiming at the protection of persons with disabilities.
According to the Standard Rules, citizens with disabilities should be accorded the same rights and obligations as others. Looking at the rates in questions 6 and 7 one is struck by the rather high prevalence of civil, political, social and economic rights. It must be remembered that this is not identical with the ability of the state to implementing these rights in practice. As a matter of fact, these legal rights are in many cases to be seen as declarations of intent. Many countries include these rights in their legislation, otherwise almost appearing to denigrate their value. Law is a necessary but not a sufficient precondition for achieving the sort of social change which will lead to people with disabilities being treated as equals. Nonetheless, if there is a legislative framework people with disabilities can defend themselves against Governments ignoring, abusing or neglecting their rights. They can advocate their own interests.
Many findings in this survey are discouraging. The implementation of the Standard Rules has not been effected as wanted. Four rules have been investigated and, in many cases, the results from the Member States indicate that conformity with the provisions in the Standard Rules has been ensured through legislation and regulations but only to a low degree. Little has been done, if the high frequency of respondents to this survey is not to be regarded as a result in itself. The result would be to interpret the responses as the recognition of disability in practice entering the agenda of the Governments; becoming an issue that cannot be hushed back into silence. Compared with one of the objectives of the UN Disability Decade - to highlight the disability question, to make it a well-known subject and to encourage the policy-makers to address it - there has been a certain progress, but the conclusion must be that the pace of the progress is very slow.
Equalization of opportunities for persons with disabilities still remains a challenge to realize. However, persons with disabilities are world wide becoming more and more aware of the fact of being citizens with equal rights and obligations. As regards governments, their feeling of responsibility for persons with disabilities is in many cases certainly minimal, seen in absolute terms, but compared to earlier, this feeling has increased.
Contents of the UN Report
