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| Theme: Statistics, Data and Evaluation,
and Monitoring Programme Monitoring and Evaluation; The Disability Perspective in the Context of Development |
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II. TRENDS IN POLICIES AND PROGRAMMES FROM THE DISABILITY PERSPECTIVEA. Historical review of United Nations efforts in disability through the end of the United Nations Decade of Disabled Persons in 19921. Events leading up to the World Programme of Action concerning Disabled PersonsPrior to 1970, the United Nations largely dealt with disability issues from a social welfare and medical model perspective11. In its first ten years of work, the UN focused on promoting the rights of persons with physical disability, with a primary concern with the establishment of different international bodies and with the development of suitable operational programmes to deal with disability issues in cooperation with non-governmental organizations (NGOs) and related professional bodies. In the period from 1955 to 1970, an emphasis on prevention and rehabilitation was established through technical assistance, public information campaigns and monitoring mechanisms. Relatively little attention was directed to obstacles created by social institutions and society in general. The 1960s, and in particular, the late 1960s became a time for reevaluation of policy options and approaches. In 1969, the General Assembly adopted the "Declaration on Social Progress and Development"12, which, in Article 19, advocates the provision of health, social security and social welfare services for all persons advocating the provision of measures to rehabilitate the mentally and physically disabled to facilitate their integration into society. Provisions advocated were education, vocational/social guidance and job training and placement. In December 1971, the General Assembly proclaimed the "Declaration on the Rights of Mentally Retarded Persons",[13] which states that the mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings, a right to proper medical care and education, to economic security, to a qualified guardian if required, to protection from exploitation and to legal procedures. The Declaration stresses that mentally retarded persons should live with their families and participate in the community. In December 1975, the General Assembly adopted the "Declaration on the Rights of Disabled Persons",[14] which states that all persons with disabilities have the same rights as other persons, which include: self sufficiency measures, education, medical services, social rehabilitation, vocational training/rehabilitation, aid, counseling, placement services, economic and social security, employment, living with their families, participation in social and creative events, protection against exploitation, abuse, degrading behaviour and legal aid. The resolution culminated the beginning of a new conceptual approach to disability issues as human rights issues. In 1976, the General Assembly declared 1981 as the International Year of Disabled Persons (IYDP).[15] This was accompanied by the formulation and adoption, in 1982, of the World Programme of Action concerning Disabled Persons[16] and proclamation of the period 1983-1992 as the United Nations Decade of Disabled Persons.[17] 2. Key constructs of the World Programme of Action concerning Disabled PersonsThe World Programme of Action has two goals - ''full participation'' of disabled persons in social life and development, and of ''equality'' - and three main objectives - promoting effective measures for prevention of disability, rehabilitation and equalization of opportunities. By promoting all three measures for the prevention of disability, rehabilitation and the equalization of opportunities for disabled persons, the World Programme of Action concerning Disabled Persons represents the culmination of a movement towards a human rights model. While not abandoning more traditional efforts regarding disability, the human rights approach is clearly placed on an equal par with the more traditional concerns. Both Assembly resolution 37/52 and the World Programme take care to define equality as a parity of opportunities with those of the whole population. This parity is viewed not as a static phenomenon but one that would be fostered and maintained as countries engaged in economic and social development[18]. Thus, the concepts would apply equally to both developing and developed countries. In relation to the goals, prevention is viewed in terms of preventing Impairments and their negative consequences[19]. In assessing the situation at the time of the adoption of the World Programme, the General Assembly noted that although there had been a steady growth of activities to prevent Impairment, those activities reached only a small percentage of those who needed them. The situation in developing countries was noted to be a particular concern where many lacked a system for early detection and prevention,especially for women, infants and young children.[20] Rehabilitation is defined in terms of a goal-oriented, time-limited process to enhance functioning in the World Programme of Action. The emphasis on rehabilitation is positive, stressing the dignity, integrity and abilities of the individual, the resources of the family, the integration of such services into a societal context and the empowerment of the individual in his or her rehabilitation process. The World Programme noted that rehabilitation normally would include the following kinds of services: (a) early detection, diagnosis and intervention, (b) medical care and treatment, (c) counseling, (d) training in self care, (e) provision of assistive devices, (f) specialized education services, (g) vocational education and (h) follow-up actions[21]. While advocating the promotion of all of these types of services, the Programme urged that financial barriers to the availability of assistive devices be eliminated, that countries support the local production of aids suited to the conditions under which they are used and that the development of aids be compatible with the overall technological development of the country. Countries were urged to consider establishing national centres to support the local production of aids. The Programme stresses the delivery of services within the country's general system social service delivery system, unless (a) the resources of the general service system are inadequate or (b) special services are needed for those living in rural areas, urban slums and shanty towns. The rehabilitation needs of persons with mental health issues are also stressed.[22] Equalization of opportunity means the process of enhancing accessibility to the general system of society[23]. The stress here is on the rights of individuals with disabilities and their inclusion in all sectors of society. Education and employment were two issues highlighted for evaluation, with conclusions drawn that opportunities were not equal in these areas but that equalization was definitely feasible[24]. Hence, rights in these and other areas could be achieved but primarily through political and social actions. Nine mechanisms are identified in the World Programme to further equalization of opportunities[25]:
The Programme urges that the participation of disabled persons in decision making be promoted by assistance to organizations of disabled persons, by proactively fostering the development of such organizations and by the establishment of direct contacts with such organizations[26]. The situation of the following special groups is noted: women, children, the elderly, victims of crime, victims of torture, refugees and displaced persons and migrant workers[27]. Other important elements of the Programme are a community-based approach to communications, public information and staff training, as well as a coordinated information and public education campaign accessible to all[28]. As will be seen later, the various approaches in the World Programme of Action have eventually been combined such that human rights issues are not only on a par with other issues in the Programme but rather in a way that all issues can now incorporate human rights concerns. 3. Implementation of the World Programme of Action of Action concerning Disabled Persons during the United Nations Decade for Disabled Persons (1983 to 1992)The World Programme of Action identifies a number of United Nations bodies and organizations to assist on request countries with regard to prevention of disability, rehabilitation and equalization of opportunities[29]:
In planning its coordination activities early in the United Nations Decade of Disabled Persons, the (former) Centre for Social Development and Humanitarian Affairs focused on the importance of quality statistics for monitoring equalization of opportunity. In 1984, an Expert Group on development of statistics for disabled persons was convened at the Vienna International Centre, which concluded... "Operationalization of the concepts, definitions and instruments of observations should not be dominated by health aspects alone. Indicators must focus on equalization of opportunity and handicapping facets of the environment. Indicators should be developed that identified barriers and the means of eliminating them. The situation of disabled persons should be measured over time and compared with that of others who were not disabled."[30] With regard to monitoring, experts recommended that a study be prepared on the selection and compilation of indicators for monitoring the World Programme of Action[31]. Statistics thus would be compiled for monitoring progress towards the goals of the Programme. The Expert Group urged that the ICIDH be considered for its applicability to censuses and surveys and that the opportunity costs of loss may be a concept to operationalize Handicap[32]. Hence, the concept of loss of opportunity from the World Programme of Action would be linked with the measurement of Handicap and would be measured to monitor progress towards the goals of the Programme. By 1986, the need to incorporate issues of human rights and equalization of opportunity into all aspects of Programme implementation was being recognized. In a review of the objectives of the World Programme, the United Nations prepared a technical report that placed emphasis on an understanding of rehabilitation that goes beyond medical needs[33]. Trends in disability strategies now included increased emphasis on both community and family participation. The capacity of a family to support a disabled person depends on its socio-economic situation, whether it is within a social security system and the nature of the family unit. The importance of the role of family role had been recognized by the Programme, as well as in activities of UNICEF and WHO. Different strategies for community participation were outlined in the report:
During the same period, the Statistics Division was engaged in several disability-related activities. It had issued a report of five case studies that demonstrated the feasibility of gathering and analyzing data on disabled persons[34]. As a result of these case studies, the Statistics Division, in collaboration with the Gallaudet Research Institute at Gallaudet University, Washington, D.C. (USA), began constructing the "United Nations Disability Statistics Data Base (DISTAT)"[35]. The general conceptual framework of DISTAT is the United Nations framework for integration of social, demographic and related statistics[36]. The integrated framework encourages the study of persons with disabilities in a comparative manner, not in isolation. The ICIDH was employed in organizing DISTAT at the Impairment and Disability levels. Instead of employing the Handicap categories, DISTAT reports data on disabled persons for education and employment, as well as topics in social integration, household and family membership, including housing and income information. DISTAT was used in connection with the first review and appraisal of the World Programme of Action[37] and its data indicated that the socio-economic measures employed for disabled persons should be exactly the same ones used for the entire population. For the first review and appraisal, the Statistics Division concluded:
This conclusion paralleled other thinking related to persons with disabilities. As a result, the approach, if broadened, could be seen to have applicability not only to data issues but even to the formulation of disability policy and the implementation of services. Along side the use of data from DISTAT in the first review and appraisal, the (former) Centre for Social Development and Humanitarian Affairs conducted a global survey to assist in identifying obstacles and priority areas of action for the second half of the United Nations Decade of Disabled Persons. A "Questionnaire on the First Round of the Monitoring of the Implementation of the World Programme of Action" was circulated to Governments. Responses were submitted by 82 Governments and suggested strong evidence of political commitment to the Programme by countries. Of the 82 Governments responding, 67 - or 82 percent - had adopted policy-level statements of commitment to the Programme. Yet, only 49 percent (40 Governments) reported having adopted a plan or comprehensive policy with regard to disability issues[39]. Less than one-half of developing countries responding (46 percent) had enacted a clear policy on the involvement of regional and local authorities in promoting services for disabled persons at the community level.[40] The report on the first monitoring survey, and related background materials, concluded "...because disability can affect all aspects of life, it must be subsumed in the larger questions of infrastructure and the purposes and goals of national development. Policies at all levels aimed at dealing with disability issues should, therefore, be an integral part of the larger efforts aimed at promoting a better life for all. These policies should form an integral part of the overall developmental efforts of each country."[41] This conclusion demonstrated the interest in including disability issues in efforts aimed at the general population. The Expert Group concluded that the major achievements of the first half of the United Nations Decade of Disabled Persons were increased awareness, the growth in organizations of disabled people, the substantial increase in data collection efforts on disability and a growing application of the concept of community-based services. Obstacles to Programme implementation identified were: (1) resource constraints in the United Nations, (2) insufficient and inadequate information on the UN Decade, (3) limited resources and low priority assigned to disability programmes, (4) the lack of participation by disabled persons in the decision-making process, (5) lack of coordination at the national, regional and international levels and (6) no comprehensive social security systems to provide assistance to disabled persons and their families, especially in the developing world[42]. The Global Meeting of Experts made several disability policy recommendations, based on a guiding philosophy that recognizes "...the human rights of disabled persons, first as full citizens of their countries with the same rights as other citizens, and only secondarily as users of social and other services."[43] Within this philosophy, the prevention of disability, and where possible, even the cure of impairment, were endorsed as the most acceptable and cost-effective methods of reducing the incidence of disability. In his report to the General Assembly in 1987 on the first review and appraisal of implementation of the World Programme, the Secretary-General synthesized the survey findings and conclusions of the Global Meeting of Experts and noted with concern the scarcity of resources to implement the Programme. He recommended that: (1) national disability committees and similar coordinating bodies be further strengthened through adequate financial and technical support both from Governments and the private sector, (2) high priority be accorded to disability-related issues within the framework of bilateral assistance, with special emphasis on least-developed countries, and (3) Governments and NGOs were invited to contribute generously to the Voluntary Fund for the UN Decade of Disabled Persons.[44] In response to these recommendations, the General Assembly adopted resolution 42/58, "Implementation of the World Programme of Action concerning Disabled Persons and the United Nations Decade of Disabled Persons", which invited member States: (1) to reinforce national committees as focal points for the UN Decade, with assistance from the Secretary-General, (2) to incorporate disability issues in development plans and give high priority to projects concerning Programme goals, within the framework of bilateral assistance and (3) together with NGOs to contribute to the Voluntary Fund for the Deacade to enable it to respond to a growing demand for assistance, which would prioritize activities in favour of the least developed countries. The General Assembly also requested the Secretary-General to encourage the integration of disability issues into activities of the United Nations system, to give the issue high visibility and to provide employment opportunities for disabled persons. A call for a global information campaign to publicize the United Nations Decade was included in the resolution. Thus, at the mid-point of the United Nations Decade, certain key issues were being introduced and becoming clear. First, the issue of including disability issues in efforts aimed at the general population was introduced. Second, rehabilitation efforts were moving beyond traditional medical concerns. Third, resource scarcity was clearly a problem. Fourth, the emergence of organizations of disabled persons and statistical tools, including DISTAT, were clear assets to Programme implementation. Fifth, the need for a set of indicators was established. Sixth, measurements of the educational, employment and other variables were demonstrated to be the same as those for all persons and, hence, the situation of disabled persons as compared to those without disabilities, could be assessed. Finally, issues related to the handicapping facets of the environment and the loss of opportunity were of critical importance to eliminating barriers to equalization of opportunity. As the second half of the United Nations Decade progressed, the need to include disabled persons in all facets of decision making became more recognized. In 1990, a meeting of experts was convened in Järvenpää (Finland) to make suggestions on how to mark the end of the United Nations Decade. The Group recommended three priority areas: (1) programmes related to organizations of disabled people should be strengthened, supported and provided resources to ensure their participation in decision-making, (2) grassroots models of empowerment must be implemented and (3) legislation to enable disabled people to exercise fully all human rights should be promoted.[45] In outlining a long-range plan to implement the World Programme of Action to the year 2000 and beyond, the Expert Group noted that disabled persons and their representative organizations must serve as the core resource in the development and implementation of policies and programmes, that the full rights of disabled people must be clearly outlined and that the prevention of the causes of disability must be promoted within the context of human rights.[46] Equalization of opportunity concerns were now influencing the view of disability prevention. Although data development continued, activities related to data analysis and dissemination gained momentum. DISTAT was made available in electronic form. A Compendium in hard copy was disseminated, providing data from DISTAT and suggested standards for disability statistics with an eye towards establishing a common framework for the development of disability statistics[47]. The Compendium stressed that measures for disabled persons for socio-economic issues were the same as for other persons and demonstrated that educational attainment and labour force participation are lower for persons with disabilities than for the general population[48]. It discussed how to analyze variations in disability rates, noting that differences are at least partially due to definitional issues[49]. The Compendium noted that percentages are lower when questions on Impairment rather than Disability questions are used to screen. When Impairment questions are used, rates are higher than for men. When Disability questions are used, rates are more similar with rates for women being higher in some cases. Censuses, mainly used by developing countries, appear to yield lower rates than surveys, which are generally used by developed countries. This makes geographic comparisons of the data difficult. In general, rates rise with age. Moreover, rates generally are higher in rural areas.[50] Late in 1990, the General Assembly adopted resolution 45/91, which again reinforced the importance of national committees on disability issues and requested contributions to the Voluntary Fund but also highlighted two other issues: that the focus of the United Nations programme on disability shift from awareness-raising to action, with the aim of achieving a society for all by 2010; and Governments be invited to submit reports to the Secretary-General on the implementation of an "agenda for action" until the end of the Decade and beyond. In response to Assembly resolution 45/91, the Secretary-General noted that four themes deserved special attention: (1) integrating disability issues into mainstream policies, (2) formulating and implementing comprehensive disability legislation, (3) supporting national coordinating mechanisms and (4) supporting disabled persons' organizations[51]. It is important to note that the Secretary-General viewed disability-specific legislation and the integration of disability issues into general issues not as contradictory but as complementary efforts to support equalization of opportunities. Likewise, national coordinating mechanisms and disabled persons organizations are seen as supporting and reinforcing each other efforts. The Secretary-General also anticipated two other activities that would have impacts beyond the United Nations Decade of Disabled Persons:
In time, adoption of these two initiates by the General Assembly would be recognized as major achievements of the first two years following the United Nations Decade of Disabled Persons. During the second half of the United Nations Decade of Disabled Persons, training activities played an important role in Programme implementation. For example, in 1991, a workshop was held in Thailand to strengthen the capabilities of countries to produce and use statistics to answer policy questions concerning childhood disablement. Participants concluded that surveys are limited if children are divided into only two groups: the disabled attending special schools and the non-disabled attending regular schools. This division excludes those not attending school and disabled children attending regular schools.[53] Training activities not only provided information to participants but yielded important information from the participants who often wold frame issues in new ways. When included as part of a comprehensive review of disability concerns, children's issues have offered the opportunity to obtain a different and perhaps more comprehensive perspective of disability policies and programmes. By the end of the United Nations Decade, the (former) Center for Social Development and Humanitarian Affairs elaborated five issues related to further implement the World Programme of Action:
The emergence of these issues moved implementation toward prioritizing of action by focusing on labour market accessibility, as well as closer towards a strategy of moving disability issues into mainstream efforts. In 1992, the Secretary-General conducted his second review and appraisal of implementation of the World Programme. The report concluded that because disability is closely linked to economic and social factors, progress towards the goals of the Programme has been slow, particularly in developing countries[55]. Even though the United Nations Decade of Disabled Persons had laid some foundations particularly in emphasizing equalization of opportunities, most Governments still lacked decisive concerted measures. The report anticipated that the Programme, as well as work related to the "Long-term Strategy to implement the Programme" and the "Standard Rules on the Equalization of Opportunities for Persons with Disabilities" would be the primary drivers of United Nations activities in the field of disability in the period beyond the Decade. The report noted the need to reinterpret disability in light of changes in technology, preventative medicine and in ideological climates.[56] The second review and appraisal noted the following achievements of the Decade[57]:
Obstacles noted by the second review and appraisal were[58]:
As a result of the progress achieved and obstacles identified, Governments were urged to comprehensively review their policies and develop comprehensive policies to further the full and effective integration of disabled persons. United Nations bodies and organizations were urged to include disability issues into their policies and programmes and to set an agenda for action with specific targets by 2002. In response to this report, in December of 1992, the General Assembly expressed its strong commitment to continuing activities to implement the World Programme and adopted resolution 47/88, "Towards Full Integration of Persons with Disabilities Into Society; a: continuing World Programme of Action". Assembly resolution 47/88 urged that the elaboration of standard rules on the equalization of opportunity for disabled persons be expedited and that disability issues be considered at upcoming United Nations global conferences. The resolution also noted that every year, the International Day of Disabled Persons be observed on 3 December, and requested that revisions of the translation of the World Programme of Action into official languages of the United Nations, in particular the terms "Impairment", "Disability", "Handicap" and "Disabled Person" be finalized. With regard to Programme monitoring, the resolution requested that the Statistics Division continue its work related to collecting and disseminating disability data and that the Secretary-General review the Human Development Index of the United Nations Development Programme and "include an evaluation of the way that a society treats its disabled citizens as a factor of quality of life in that society". By 1992, the issues that had emerged by the middle of the United Nations Decade had not only remained but were influencing thinking beyond its end. Other issues were emerging, however. First, the need to include disabled persons in decisions was of paramount importance. Second, all aspects of disability policy, including rehabilitation and prevention, needed to incorporate human rights concerns. Third, the scarcity of resources implied a need to prioritize. Fourth, specific plans to incorporate disability concerns into other policies were needed. Fifth, specific targets were needed. Sixth, new initiatives would soon join the Programme as drivers of disability policy. Finally, children's issues were being increasingly recognized as an important consideration in disability policy. [11] See discussion on "the medical model" and "the social model" to disability in Office of the Deputy President[of the Republic of South Africa], Integrated National Disability Strategy; white paper ( Cape Town, November 1997). [12] General Assembly resolution 2542 (XXIV) of 11 December 1969. [13] General Assembly resolution 2856 (XXVI) of 20 December 1971. [14] General Assembly resolution 3447 (XXX) of 9 December 1975. [15] General Assembly resolution 31/123 of 16 December 1976. [16] General Assembly resolution 37/52 of 3 December 1982. [17] General Assembly resolution 37/53 of 3 December 1982 [18] World Programme of Action …, paras 5; and 80-81. [19] Ibid., para 54 summarizes the "Leeds Castle Declaration on the Prevention of Disablement" (12 November 1981). [20] Ibid., paras 13-14. [21] Ibid., para 15. [22] Ibid., paras 99-107. [23] Ibid., para 21. [24] Ibid., paras 64-70. [25] Ibid., paras 108-137. [26] Ibid., para 90. [27] Ibid., paras 45-51. [28] Ibid., paras 138-140; 141-147; and 148-154. [29] Ibid., paras 170-179. [30] United Nations, "Report of the Expert Group on Development of Statistics on Disabled Persons (Vienna, 2-6 April 1984)" (ESA/STAT/AC.18/7) p 5. [31] Ibid., p 23. [32] Ibid., pp 7-8; and 21. [33] United Nations, Disability: situation, strategies and policies (ST/ESA/176) (New York, 1986). [34] Development of Statistics …. [35] United Nations Disability Statistics Data Base …. [36] See "Scope, objectives, and uses of disability statistics and indicators," Chap I in United Nations, Development of Statistical Concepts and Methods on Disability for Household Surveys (Studies in Methods, Series F, No. 38) (United Nations publication, Sales No. E.88.XVII.4). [37] United Nations, "Review and appraisal of progress achieved and obstacles encountered in the implementation of the World Programme of Action concerning Disabled Persons during the first five years of the United Nations Decade of Disabled Persons, with particular reference to (a) prevention, (b) rehabilitation, (c) equalization of opportunities, and (d) the role of disabled people and their organizations at (I) the national, (ii) the regional and (iii) the international levels: development of statistics for monitoring the implementation of the World Programme of Action concerning Disabled Persons, 1983-1992 (Stockholm, 17-22 August 1987)" (CSDHA/DDP/GME/CEP.4) (Vienna, 1987), p. 30. [38] Ibid., p 9. [39] United Nations, "Review and appraisal of progress achieved and obstacles encountered in the implementation of the World Programme of Action concerning Disabled Persons during the first five years of the United Nations Decade of Disabled Persons, with particular reference to (a) prevention, (b) rehabilitation, (c) equalization of opportunities, and (d) the role of disabled people and their organizations at (I) the national, (ii) the regional and (iii) the international levels: report on analysis of monitoring questionnaire (Stockholm, 17-22 August 1987)" (CSDHA/DDP/GME/CEP.3) (Vienna, 1987), p. 9. [40] Ibid., p 14. [41] Ibid., p 63. [42] United Nations, "Evaluation of the Implementation of the World Programme of Action concerning Disabled Persons during the First-Half of the United Nations Decade of Disabled Persons; report of the Secretary-General (A/42/561)" p 3. [43] United Nations, "Report; Global Meeting of Experts to Review the Implementation of the World Programme of Action concerning Disabled Persons at the Mid-Point of the United Nations Decade of Disabled Persons (Stockholm, 17-22 August 1987)" (CSDHA/DDP/GME/7) (Vienna, 1987), p. 5. [44] United Nations, "Implementation of the World Programme of Action concerning Disabled Persons and the United Nations Decade of Disabled Persons; report of the Secretary-General (A/42/551)". [45] United Nations, "Report; Expert Group Meeting on Alternative Ways to Mark the End of the United Nations Decade of Disabled Persons (Järvenpää, 7-11 May 1990)" (Vienna, 1990) p 3. [46] Ibid., p 10. [47] Compendium of Disability Statistics …. [48] Ibid., pp 47-51. [49] Ibid., p 15. [50] Ibid., pp 43-45. [51] United Nations General Assembly, "Implementation of the World Programme of Action concerning Disabled Persons and the United Nations Decade of Disabled Persons; report of the Secretary-General (A/46/366)" pp 6-7. [52] Ibid., pp 11-12; and 17. The "Long-term strategy to implement the World Programme of Action concerning Disabled Persons to the Year 2000 and Beyond" is contained in United Nations General Assembly, "Implementation of the World Programme of Action concerning Disabled Persons report of the Secretary-General (A/49/435, annex)" [http://www.un.org/esa/socdev/dislts00.htm]. [53] United Nations, Statistics Division in collaboration with the United Nations Educational, Scientific and Cultural Organization and the Royal Thai Government, Report; Interregional Workshop on Disability Statistics (Bangkok, September 1991)" (New York, 1991) p. 5. [54] United Nations Administrative Committee on Coordination, "Report; Tenth Inter-Agency Meeting on the United Nations Decade of Disabled Persons (Vienna, 7-10 December 1992)" (ACC/1992/31) pp 2-3. [55] United Nations General Assembly, "Implementation of the World Programme of Action concerning Disabled Persons and the United Nations Decade of Disabled Persons; report of the Secretary-General (A/47/415)" pp 2-3. [56] Ibid., p 4. [57] Ibid., pp 6-8. [58] Ibid., pp 8-10. |
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