SP DISCUSSION PAPER NO. 0013 23087 Survey of Disability Projects:The Experience of SHIA, Swedish International Aid for Solidarity and Humanity Kaj Nordquist June 2000 rot tion LABOR MARKETS, PENSIONS, SOCIAL ASSISTANCE T H E W OR L D BA N K Survey of Disability Projects The Experience of SHIA, Swedish International Aid for Solidarity and Humanity by Kaj Nordquist June 2000 The findings, interpretations, and conclusions expressed in this paper are entirely those of the author and should not be attributed in any manner to the World Bank, to its affiliated organizations or to members of its Board of Executive Directors or the countries they represent. Please send any comments to Kaj Nordquist (kajnordqg,algonet.se). ABSTRACT This paper reviews the work of SHIA, an umbrella association of Swedish organizations of people with disabilities, and derives lessons and good practices on disability-related activities. SHIA emphasizes supporting human rights while supporting better lives through investments. It accomplishes this in part by working closely with local organizations of people with disabilities; SHIA's strategy is to empower such organizations and thereby to empower people with disabilities. The paper demonstrates that effective partnerships are possible, the challenges of such partnerships, and the need to focus on technical assistance. Recommendations for the World Bank provide possible directions for Bank involvement in disability work. CONTENTS Acknowledgments iv Abbreviations v 1. Introduction 1 11. How SHIA works I III. SHIA lending 4 Project composition andfunding 5 Project selection and evaluation 5 IV. What works? 7 Guidelines and lessons 7 Challenges 9 V. Recommendations for strengthening World Bank assistance 10 Appendix. Review of Nine SHIA projects 12 Swedish Association of the Visually Impaired and the World Blind Union 12 Swedish Association of Social and Mental Health and Association de Usuarios de Salud Mental 21 The Swedish Association of Neurologically Disabled and the Nepal Disabled Association 28 Swedish Association of the Visually Impaired, Fundacion Braille de Uruguay, and Union Latinoamericana de Ciegos 34 The Swedish Association of Neurologically Disabled, the Polish Association of Multiple Sclerosis, and the Polish Association for Neuromuscular Illnesses 40 Swedish National Association of the Deaf and Associaci6n Nacional de Sordos de Nicaragua 44 The Swedish National Society for People with Mental Handicaps, CAMR, PTOMH, NGO Organization for Diyalape, Institute for Training and Alternative Development Strategies, Young Men's Buddhist Association, and Regional Social Ministry in Galle 48 SRF's Regional Branch in Holland and the Vietnam Blind Association 53 The Association of the Swedish Deajblind, Deafblind organizations in Kenya, Uganda, and Tanzania 57 References 62 Books 62 Reports 62 . . ACKNOWLEDGMENTS The author would like to thank the following for their support and understanding: Louise Fox, World Bank; Pamela Dudzik, World Bank; Birgitta Andersson, Chair SHIA; Lars Bolander, Treasurer SHIA; Barbro Carlsson, General Secreterary SHIA; Dr. Bengt Lindqvist, Special Rapporteur to the General Secretary of the United Nations; Ylva Lindstr6m, Sida; Kicki Nordstrom, WBU and SRF Vice President; Asa Nilsson; and Erika, Boel and Ingrid Nordquist. iv ABBREVIATIONS AFUB African Union of the Blind ANSNIC Associaci6n Nacional de Sordos de Nicaragua ASMEN Associaci6n de Usuarios de Salud Mental CAPS Centro Assistancia Psyko Social CBR Community-based rehabilitation CHAWATA Tanzania Association of the Disabled CIDA Canadian Authority of Assistance to Developing Countries DHR Swedish Federation of Disabled People DPI Disabled People International FBU Fundaci6n Braille de Uruguay FSDB The Association of the Swedish Deafblind FUB The Swedish National Society for People with Mental Handicaps IBSA International Blind Sports Association IDA International Disability Alliance NDA Nepal Disabled Association NGO Nongovernmental organization NHF Norwegian Association of the Disabled NHR The Swedish Association of Neurologically Disabled NNADH Nepal National Federation of the Deaf and the Hard of Hearing ONCE Organizaci6n Nacional de Ciegos Espafioles PTSR Polish Association of Multiple Sclerosis RI Rehabilitation International RSMH Swedish Association of Social and Mental Health SDR Swedish National Association of the Deaf SHIA Swedish Organizations of Disabled Persons International Aid Association - Solidarity Humanity International Aid (In Swedish: Svenska Handikapporganisationers Internationella Bistandsforening) Sida Swedish International Development Cooperation Agency SRF Swedish Association of the Visually Impaired TPB Swedish National Library for the Blind TZCHM Polish Association for Neuromuscular Illnesses ULAC Union Latinoamericana de Ciegos UN United Nations VBA Vietnam Blind Association WBU World Blind Union WHO World Health Organization YMBA Young Mens Buddhist Association Exchange rate Throughout the 1990s the exchange rate was about $1 = 8.5 kronor. v I. INTRODUCTION The World Health Organization (WHO) estimates that 5-6 percent of people in developing countries have disabilities, 80 percent lack access to professional health care, and only 4 percent have access to rehabilitation services. There are many sociopolitical barriers to improving the standard of living of people with disabilities in developing countries. War, illness, and especially poverty limit opportunities for people with disabilities to improve their lives. Political and structural obstacles, such as lack of political will, leadership, and funding, impede discussion of disability issues that could raise awareness and eventually increase assistance. Similarly, many nongovernmental organizations (NGOs) in developing countries, which administer many of the programs for people with disabilities, lack a voice at the political level. However, strong NGOs are essential to recognizing and solving the problems of people with disabilities in developing countries. This paper highlights the work of Sweden's International Aid for Solidarity and Humanity (SHIA), an umbrella association of Swedish NGOs providing assistance and other programs for people with disabilities by providing support to NGOs working on disability issues.' SHIA coordinates the activities of member organizations and works to improve collaboration among them in the sharing of expertise, resources, and experience for the development and expansion of projects for people with disabilities in developing countries. This paper examines SHIA's experience during the 1990s and provides an overview of selected projects as guidance on lessons and best practices on disability-related activities. II. How SHIA WORKS SHIA was founded in 1981 as an executive arm of Swedish NGOs composed of and providing assistance to people with disabilities-the blind, deaf, mobility-impaired, mentally and medically impaired, and deafblind-in developing countries (see box 2.1 for a list of 1 member organizations). SHIA members are affiliated with international organizations, such as the World Blind Union or the World Federation of the Deaf Many employees in SHIA organizations have disabilities, and they give the organizations special expertise and credibility. Box 2.1. The 1999 members of SHIA Swedish Asthma and Allergy Association Swedish Federation of Disabled Persons (DHR) Swedish Hemophilia Society (FBIS) Association of the Swedish Deafblind (FSDB) Swedish National Society for Persons with Mental Handicap (FUB) Heart and Lung Patients National Association (HL) Swedish Association of the Hard of Hearing (HRF) Swedish Association of Neurologically Disabled (NHR) Swedish Psoriasis Association (PSO) Swedish National Association for Disabled Children and Young People (RBU) Swedish Rheumatics Association (SRA) Swedish Association of Kidney Patients (RNJ) Swedish Association of Social and Mental Health (RSMH) Swedish Association of Persons Disabled by Accidents or by Polio (RTP) Swedish National Association of the Deaf (SDR) Swedish Epilepsy Federation (SEF) Swedish Sports Organization for the Disabled (SHIF) Swedish Association of the Visually Impaired (SRF) Visually Impaired Youth of Sweden (US) SHIA's goal is to create full and equal participation for people with disabilities, ensuring that they have the same access to social and economic development as the rest of the population. The approach is to contribute to the empowerment of people with disabilities so ' SHIA (Svenska Handikapporganisationers Internationella Bistandsfdrening) is translated into English as both Solidarity Humanity International Aid, its name in logotype, and Swedish Organizations of Disabled Persons International Aid Association, its complete name in English. 2 that they have the strength and ability to influence and improve their life situation. SHIA acts in the belief that to empower an organization is to empower its members. For this reason, SHIA assists organizations ofpeople with disabilities, rather than organizationsfor people with disabilities. SHIA defines such organizations as ones in which people with disabilities hold power and direct the organization's policies and decisions. SHIA gives these organizations money and advice on managing, fundraising, raising awareness, improving central administration, establishing regional branches, and providing services and income generating activities for members. SHIA promotes awareness among the general public by providing information on people with disabilities and pressuring groups to include disability concerns in their activities. SHIA also supports rehabilitation services-sports, physiotherapy, medical treatment-in programs for families and communities and national plans for medical, organizational, and financial assistance. A third type of support-for education and vocational training-integrates children with special needs into local schools and gives adults the skills they need for employment. SHIA also supports projects with crosscutting goals, like those that provide both organizational and rehabilitation services. Within all these areas, resources are made available for active participation and exchange among project participants and donors. The Swedish International Development Cooperation Agency (Sida) works with SHIA and other organizations in providing assistance to developing countries. Sida focuses on economic growth, economic and social equality, economic and political independence, democratic development, protection of the environment, and equality between women and men. Sida's goals guide SHIA's project selection process, both because Sida provides a large portion of the funding and because SHIA's policy is to integrate its work within the mainstream of Sweden's policies. Sida does not select projects. Rather, it works with SHIA to determine the viability of SHIA projects and the preconditions for implementing them through guidelines and coordination along with 12 other umbrella organizations, such as trade unions, churches, and 3 solidarity groups. These organizations assess projects themselves, based on their needs, goals, content, target groups, risks, and the organization's status in the local community. Sida assists projects that help people with functional impairnents and that integrate disability issues into appropriate types of assistance and agreements. If a project within SHIA is approved, Sida will provide 90 percent of the financing; the applicant organization provides the other 10 percent. Sida insists that this money be raised in Sweden, and in-kind contributions are not considered part of the 10 percent. SHIA must present to Sida an annual report for each project, and although funding must be reapproved each year, SHIA and Sida sign an agreement every five years to regulate their relationship. III. SHIA LENDING SHIA's workload has increased steadily over the past decade (table 3.1). In 1998 alone SHIA's members supported some 70 projects in 23 countries in four regions-Africa, Asia, East-Central Europe, and Latin America. Project costs almost doubled between 1990 and 1998, primarily because of the inclusion of projects in the post-communist countries in Europe in 1998. (Economic and social conditions of people with disabilities in those countries have deteriorated rapidly since the transition to a market economy.) The average project cost increased by about 34,000 kronor during the same period (see Appendix). 4 Table 3.1 SHIA's international project costs, 1990-98 (millions of Swedish kronor) Period 1990-91 1991-92 1992-93 1993-94 1994-95 1995-96 1997 1998 Total project 15.4 13.8 15.6 16.4 20.4 27 15.3 29.7 costs Number of 41 50 45 50 60 60 65 67 projects Average .187 .138 .173 .164 .170 .225 .117 .221 project cost Number of 18 16 18 17 17 15 16 23 countries Note: With the exception of 1994-95 and 1995-96, which cover 18 months, each year is 12 months; 1997 and 1998 data are for calendar years. Project composition and funding The mix of projects has changed as well, shifting from projects that focus on the visually impaired to projects aimed at visually impaired women and projects of a multisectoral nature. The number of projects that focus on women as a group increased 20 percent. The number of projects directed at the mentally impaired doubled, while the number of projects for the medically impaired declined. SHIA has not yet focused on projects directed solely at those injured through war, conflict, or catastrophe. Project selection and evaluation There are two key criteria for any SHIA project: it must be affiliated and carried out by a member organization, and it must be approved through a multistage application process: * Stage 1: Member organizations with project ideas apply to SHIA for funding. (In some cases a local member branch must apply to its national headquarters before the application is sent to SHIA.) * Stage 2: SHIA examines all applications, making sure each adheres to SHIA principles, and submits an annual request to Sida. * Stage 3: Sida decides on grants once a year. 5 Responsibility for project implementation and monitoring rests with the SHIA partners working in developing countries; SHIA's role is advisory and supportive. Several methods are used to monitor a project's implementation: * Project agreements specify procedures for monitoring. * Project status reports are provided frequently at SHIA meetings. * Seminars are conducted regularly on project topics. * Scheduled reports are written by member associations. * SHIA and its members communicate frequently on projects. The underpinnings of SHIA's evaluation efforts comes from Oxfam's gender training manuals and their five criteria of equality: welfare, access, awareness, participation, and control. Prospective projects thus are assessed on the basis of their contributions to the welfare (access to housing, health care, and rehabilitation), access (to education, information, and income opportunities), awareness (of the needs and rights), participation (in decisionrnaking), and control (of individual resources and benefits) of people with disabilities. Thus SHIA applies a model of sustainability that views improvements in welfare and accessibility as just the starting point in the advancement of people with disabilities. The ultimate goal is to achieve equal rights for people with disabilities, ensuring that they have full control over their lives. SHIA views equality in its projects as the ability of people with disabilities-and their organizations-to speak for themselves. Given this goal, the aim of evaluation is to represent a project's contribution to social development, awareness raising, and the subsequent increased support to organizations. The traditional evaluative approach (and the approach that Sida uses)--logical framework analysis-has not been shown to be the best approach for measuring the outcomes of SHIA projects; thus, SHIA has used a modified logical framework combined with the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities. In order to more effectively measure the outcomes of its projects, SHIA is developing a new evaluation method. 6 This new evaluation model is based on the notion that evaluation should entail sharing information and exchanging views and should have as its goal the inspiration of improvements and change. An evaluation thus draws evaluators from both sides of the project; instead of donors sending consultants on missions to check results, the work is carried out through two-way communication that fully involves the receiving side as well. Once both sides have agreed on the need for an evaluation, they prepare a written plan that assigns responsibilities in a flexible way. Following a working a seminar at which the two groups discuss the project and strive for consensus, they prepare a report on their findings. Although there are challenges with this new method, preliminary use has shown that it does increase participation and that when it is used as a monitoring method, plans for the future are better developed. IV. WHAT woRKs? One of SHIA's greatest strengths is its institutionalization of lessons learned from project experiences. Since its inception, SHIA has continuously reviewed its projects to improve its support and to better advise other donors. Guidelines and lessons In response to this review, SHIA is developing new guidelines for supporting projects. In general, however, the association uses these general guidelines for developing a successful project: * Adapting and applying the proven methods of other NGOs to its work. * Disseminating current information to member associations and NGOs. * Educating staff in member organizations prior to project implementation. * Cooperating with local governments and international organizations (such as International Labour Organization, United Nations Development Programme, the World Health Organization) on how best to implement projects. Projects that assist people with disabilities must examine and address a variety of complex problems simultaneously. For example, although activities for people with 7 disabilities are foremost about equality and basic human rights, improved health care would dramatically reduce the incidence of disability in the developing world. Therefore, although the focus on social inclusion of people with disabilities is essential, prevention of disabilities caused by poor medical care cannot be ignored. A cooperative project of the Swedish Association of the Visually Impaired and the World Blind Union is an example of the multifaceted nature of projects assisting people with disabilities. This project seeks not only to improve the life situation for blind women and girls, but also to empower them through education, rehabilitation, and participation in activities and decisionmaking of the World Blind Union. (Detailed information on this project and others can be found in the Appendix.) Another lesson is the importance of including people with disabilities in mainstream society, through programs tailored to the variations in type of disability and number of people with disabilities in each country. Special arrangements for people with disabilities that exclude them or segregate them from the rest of society should be avoided as much as possible. Because people with disabilities are not a homogeneous group, successful projects need to reflect their differing needs and a country's social, economic, and cultural barriers. Finally, projects that emphasize the involvement of local people and organizations in decisionmaking are most successful (box 4.1 lists some characteristics of successful assistance projects). Local involvement encourages organizational development and the free exchange of information. Observers in the field note that local advisers are best equipped to review projects. Unfortunately, national institutions often receive more financial project support than local organizations. However, because of SHIA's support, many local organizations have become influential in their countries. Support to such organizations and local involvement should include not only funding, but training in leadership and effective administration as well. Box 4.1. Characteristics of successful assistance projects Successful assistance projects often have the following characteristics: * Careful and clear planning at the outset of a new project. 8 * Involvement of the recipients of assistance. * Opportunities for independent development. * Well-established local organizations. * Agreement on project aims, activities, terms of completion, and mutual exchange of experience and ideas throughout the life of the project. * Good working relationship with other aid donors. * Well-planned public relations campaigns. * Equal input by men and women. * Experienced local or regional field staff, preferably with disabilities. * Direct contact between individual members of participating organizations. * Small projects based on personal contacts and experiences. * Long-term support to organizations to enable self-sufficiency. * Grants appropriate to the size of the organization. * Use of local financing. * Investments combined with technical assistance. Challenges Even well-constructed ideas for improving the situation of people with disabilities can misfire when good communication is missing between recipients and donors. Finding ways to improve communication is an important part of SHIA's approach. As noted earlier, SHIA is working together with partner NGOs to develop a new evaluation approach that emphasizes such communication. While there are advantages to this approach, challenges to overcome include creating an effective evaluation when dealing with the self-interests on both sides and inevitable differences in culture that lead to miscommunication and varied expectations of outcomes. Because SHIA also works with the international community, it must find ways of increasing awareness among people in the developing world of problems associated with disability and encourage other donors to make disability an important part of their support activities. 9 SHIA also faces challenges in its role as a successful umbrella organization of organizations of people with disabilities. There are increasing demands, both from existing member organizations and from organizations wishing to join SHIA. This growth, both in activity and size, requires a renewed look at the quality of project management. SHIA is developing methods to increase the level of responsibility of organization members in managing projects and to increase the level of professionalism of staff in member organizations. V. RECOMMENDATIONS FOR STRENGTHENING WORLD BANK ASSISTANCE The World Bank, because of its strong influence and reach, can be an important impetus for improving the equality of opportunities and treatment of people with disabilities in client countries. By incorporating the following recommendations-derived from SHIA's experience-the Bank can help to move disability issues higher on the international agenda and truly work toward alleviating poverty in all societies. * Strive for the inclusion ofpeople with disabilities in general development assistance to client countries. The norms and strategies of assistance should focus on creating the same quality of life for people with disabilities as for people without disabilities. The strategy of making special arrangements to cater to the needs of people with disabilities should be avoided as much as possible. With the example that this policy sets, the World Bank will promote the inclusion of people with disabilities in client countries. * Support efforts to put disability-related issues on the international agenda. The World Bank, with its broad international influence and cross-country experience, should participate in joint efforts to place the question of disability on the international agenda. * Encourage governments and donors to include disability issues in their development programs. The Bank can do this through dialogue and, internally, by making the inclusion of such issues a precondition for Bank support. * Be aware of the consequences ofpolicies on people with disabilities. For every project there should be an analysis of the possible impacts on people with disabilities. 10 * Strive to integrate experts and spokespeople with disabilities into projects that target or affect people with disabilities. The aims of projects should be based on the conditions and priorities set by people who are themselves disabled. Working together with disability NGOs is essential in this area. * Initiate, finance, and systematically gather scientific research on the nonmedical effects of disability. Solid empirical knowledge of issues affecting people with disabilities in developing countries is based on approximations and is far from complete. More effort should be given to gathering factual information on the status of people with disabilities in developing countries. Information generated should be disseminated widely. * Consult with the world body on disability matters, the International Disability Alliance (IDA). IDA is an alliance of the six major international disability rights organizations: Disabled Peoples International, Inclusion International, World Blind Union, World Federation of the Deaf, World Federation of the Deaf-Blind, and World Network of Psychiatric Users and Survivors. The national affiliates of IDA should be used as the experts for client countries. 11 APPENDIX. REVIEW OF NINE SHIA PROJECTS The appendix presents reviews of nine of the most successful SHIA projects, as selected by the author. It provides a detailed overview of each project's scope, support, and objectives. Swedish Association of the Visually Impaired and the World Blind Union The name of the project is Helping Blind Women Get on the Move and use their Tools to Change the Rules. It is led by the vice presidents of the two implementing organizations: The World Blind Union (WBU) and the Swedish Association of the Visually Impaired (SRF). This was an education project from 1993-1996 and was changed to a democracy and human rights project for 1997-2000. Within applications from the Swedish International Aid for Solidarity and Humanity (SHIA) to Swedish International Development Cooperation Agency (Sida) in 1993 to 1996 the content was mainly support to regional conferences for blind women, but from 1 997-2000 the horizon widened to support to equality efforts within WBU. Ms Kicki Nordstrom, now vice president of WBU, was elected Swedish delegate to the Third Assembly of the WBU in Cairo in November 1992. She assembled the few women present to prepare the proposed resolutions. The following year the new board of WBU elected its commissions and Ms Nordstrom was appointed chair of the Women's Commission. At the Fourth Assembly of WBU in Toronto in 1996 she was elected vice president of WBU. She was appointed to take continued responsibility for matters of equality within WBU. SRF is trying to improve the situation of blind women both within its organization and in Swedish society. SRF is a member of WBU but has independent projects related to strengthening blind women in developing countries (the Women's Section of the African Federation of the Blind, for example). SRF's women's subcommittee participates in similar activities in Europe, especially in the Nordic countries. The project has not only been supported by SHIA, Sida, and SRF but also more directly by the Swedish government. Through its social ministry the government has 12 established a foundation under the ministry. A precondition for the resources obtained outside of SHIA is that they should be used exclusively in Sweden. These resources are used for mail, rent, salaries, equipment, and transport costs. The project has been supported on a limited basis by the Spanish Organization for the Blind (ONCE), the Canadian Authority of Assistance to Developing Countries (CIDA), and Helios, a program within the European Union. Institutions that provided support SRF, SHIA, and Sida. Type of support Resources have been given on SHIA's normal terms involving support grants. Establishing agencies in other countries The WBU is the international organization of the blind. The WBU is an association for organizations for the blind. The new organization was established in 1984 and currently has a membership of 160 countries. Every country sends a certain number of representatives (relative to its population) to the General Assembly every fourth year. The countries pick representatives from the organizations for the national delegations. The WBU represents about 160 million people visually impaired people wxorldwide. This figure is somewhat lower than that estimated by WHO. Most WBU members are women: roughly half the visually impaired population in poor countries (where that population has a low average age) are female. In more affluent countries, the visually impaired population has a higher than average age and consists mostly of women. The WBU is divided into seven regions: Africa, the Middle East, Asia, East Asia and the Pacific, Europe, Latin America, and North America. The majority of members live in poor countries. The World Health Organization (WHO) states that approximately 60 percent of visual impairment in these countries is caused by inadequate health care. 13 All activities in the project are carried out in close cooperation with the seven regional branches of WBU. They are also set in motion with the participation of the national organizations. The project is working actively in the United Nations (U.N.) and cooperates with DPI and RI. Cooperation with other organizations for people with disabilities (except those in Latin America) occurs at DPI conferences. Cooperation with governments is usually through the minister responsible for equality inaugurating seminars. The project has funded trips to U.N. subregional conferences for women for leaders from WBU's member organizations. Project objectives The long-term goals are empowerment, education, and equality for the blind females-with the following criteria: 1. Blind women and girls gain full participation and good living conditions in our societies and organizations at all levels. This means full inclusion of blind women and girls in society, culture, the family, and the economy. 2. Blind women and girls win equal representation in the WBU bodies on all levels and have gained full democratic rights to participate on equal terms. 3. Blind women and girls gain equal rights to jobs, rehabilitation and basic education. 4. Blind women face no gender discrimination. These objectives have changed over time, and can be divided into two periods. 1993-1996. The situation of poor blind people should improve through strengthening their organizations and these organizations' ability to address the most relevant needs of the blind. WBU strove to become more active and gain importance by incorporating a wide range of experiences in its activities. The aim initially was to raise awareness of the important role women play in society. 14 Raising blind women's competence, self-esteem and capabilities opens opportunities for them to participate on equal terms with men in organizations for the blind. Organizations for the visually impaired tend to have more men than women-not usually the case in other organizations for the handicapped. Conferences were organized in WBU's seven regions where regional, national, and local women's groups were formed. The conferences allowed women to create their own position within the organizations and showed them that their ways of managing are not the same as men's, but are still successful. Leadership in a women's committee can provide grounding for national leadership. In order to progress in this way, visually impaired women must be involved in identifying the obstacles that prevent their participation in areas such as democracy, technology, the economy, and social and family welfare. In addition, obstacles that prevent women from learning to read and write, obtaining work and taking part in rehabilitation programs must also be identified. From SHIA's point of view, 1996 was the year that the project changed from providing limited support for education to becoming a worldwide movement for democracy and human rights. The first stage was to provide women with ways of identifying problems. Regional women's committees were established in all seven regions of WBU. It was now possible to change direction and start talking about democracy, influence and power. In 1996 the members of WBU's Women's Committee gained equality with the chairmen of the regional committees who had the responsibility of establishing national committees. 1997-2000. In Africa and Asia the constitution now states that national representation must be divided equally between men and women. This change took place in Asia in 1998 and Africa in 1996. Men were also to be involved in WBU's work on equality in conferences on gender. These conferences were also to incorporate matters of democracy, masculine and feminine leadership, the new man's role and the positive energy created by differences. 15 Type and number of beneficiaries There are two ways to look at this. One, the projects aim to improve the situation of at least 80 million blind women. Or two, the projects are just providing financial aid to a limited group of blind women. The final analysis is, of course, linked to the values that are the basis of the project. Children and other subgroups within the blind population are not affected. Project size In economic terms and in the SHIA context, the project has been large-scale. Table A.1 Project size and cost (kronor) Year Project cost Average project cost Size (kronor) (kronor) 1990-91 0 187,804 0 1991-92 0 138,000 0 1992-93 0 173,333 0 1993-94 202,595 164,000 Large 1994-95 384,394 170,000 Large 1995-96 (18 months) 705,733 225,000 Large 1997 810,915 117,692 Large 1998 1,178,530 221,641 Large As previously indicated, other resources have been given to the project by the Swedish government. Since 1996 this has been about 1 million kronor each year. There have been other small contributions from ONCE and others. However, this type of contribution has been exclusively for particular events and not given on a regular basis. In general it is more expensive to organize seminars and forums for visually impaired women than for men. Up until now rehabilitation for women has been inferior. It is costly to produce material for the visually impaired. Documents must be produced in Braille or on cassette. Activities The first phase of the project ended with the World Forum on Women in Toronto in 1996. In the second phase, all regional meetings are referred to as forums and not seminars. 16 The first seminar was held in Sri Lanka. All forums take between three and five days. One standard theme for these activities is what prevents women from involving themselves in decision-making groups. Other themes are decided by the wishes of other groups, In Latin America and Asia family affairs is always a popular topic. Much of the practical work is carried by group discussion followed by written reports. This is all part of learning the democratic process. In discussions concerning mechanisms of oppression techniques are suggested to combat these: leadership training, organization development, gender awareness and democracy. Local speakers are always engaged. One woman from each country and an assistant can participate. They must be able to manage by themselves and speak English-always the working language at the conferences. Travel and subsistence costs for women from poorer countries are covered by the project. No costs are covered for women from countries that can afford to pay. For example, the projects pay for women from countries in Eastern Europe but not for those from Western Europe. One spinoff has been the support given by SRF to the AFUB's women's section. This project started at the African seminar where the participants at the conference wanted to obtain this kind of support. There are similar ideas currently underway in Asia. Short-term objectives that are in accordance with the Draft Plan of Action for the WBU Committee on the Status of Blind Women 1996-2000: 1. A strong network of blind and visually impaired women in all WBU regions and among national member organizations. 2. Awareness that blind and visually impaired females have the right to learn to read and write, have equal rights to financial resources and available technology. 3. Actions in the field of democracy, family policies, health care and poverty-related programs as well as access to culture and sports activities. 4. Seven regional conferences and seminars on the subject of empowerment, education, and equality in each region 17 5. A forum for blind women prior to the next General Assembly. In order to achieve this the project should: * Strengthen the newly established network of blind women on all levels through the WBU Women's Committee and the regional women's committees. Identify new women leaders to develop networks * Participate in conferences concerning women with disabilities. Follow up U.N. documents of relevance dealing with the of status women. * Arrange a conference or seminar on the subject of empowerment, education, and equality in one of the seven regions of WBU. * Arrange a leadership training seminar for blind women who have regional or WBU assignments. The aim of the project is to cover important documents from the U.N. and participate in related conferences. Within the work of this project there has been participation in formulating the Women's Convention panel of experts who report to the General Secretary of the U.N. on the Standard Rules UNESCO Commission on Human Rights Implementing arrangements SHIA could initially finance the conferences and seminars in Asia, Africa, and Latin- America. The Swedish government has agreed to finance the secretariat of the WBU Women's Committee up until the next General Assembly. For this project WBU formed a special office in Stockholm in 1994, run by Ms. Nordstrom. It employs people on a part-time basis, and since 1997 two people have been employed in a part-time capacity together with Ms. Nordstrom. One person is responsible for project finances and the other handles correspondence and contacts. Both employees provide assistance with reading, writing, and guiding. Experts on gender and other relevant issues have been engaged to lecture and participate in seminars and forums, but there has not been any long-term employment of special consultants. 18 Monitoring and impact evaluation The project prepares financial reports for SHIA and other contributors. Important activities are included in a report to the WBU committee president who then forwards it to SRF and SHIA. When this is complete the project produces an annual report for SHIA describing how its resources have been used and what lessons learned. The report also includes descriptions of activities that have taken place during the year. The Social Ministry of Sweden receives a similar annual report. After considering the report, SHIA and the Swedish government reapprove the continuation for next year. In addition, a comparative study could be made on all country reports that have been presented during the regional forums from 1993 to 2000. The aim of the comparative study would be to ascertain if any evident changes have occurred in the situation and representation of blind women during the two terms of office that the project has been operating. Major restrictions in implementation The process of strengthening blind women has been underway since 1993 and has yet faced any major adverse reactions. But soon men who sit in positions of power will have to move aside and this will naturally create a power struggle. Conclusions The project is successful. It has at a very substantial rate changed the female representation within the organizations for the blind. As a direct result of the project the number of women representatives changed drastically from the assembly in Cairo in 1992 to the assembly in Toronto in 1996. It increased from 17 women in an assembly of 250 participants, to a third at the next assembly. The number of female leaders in national organizations and delegates to regional assemblies also increased during these years. How the project has improved the lives of blind women around the world is difficult to quantify. The sustainability of these results has not been a problem as there are competent male leaders who support this development and a structure for female networking has been established. The project is due to end in 2000, but if we maintain the practice of holding 19 forums for females immediately before regional assemblies of WBU, development can continue without major constraints. 20 Swedish Association of Social and Mental Health and Association de Usuarios de Salud Mental This project started in 1989 and was the first of the assistance projects within the Swedish Association of Social and Mental Health (RSMH). In those days Sweden, Italy, and Mexico were involved in developing the methods of treatment for psychological problems in Nicaragua. They supported the creation of Centro Assistancia Psyko Social (CAPS) instead of building big institutions in hospitals for the psychologically handicapped. Association de Usuarios de Salud Mental (ASMEN) was founded in 1988 in Leon and encompassed the psychosocially handicapped, their families, and professionals. ASMEN was the first organization of this type ever founded in Nicaragua. The aim of ASMEN was to become independent and use the grants to rent a place for activities and an office. Public opinion in Sweden and Nicaragua said that psychological illnesses were caused by neglecting physical, affective, and social needs. Psychologically ill people often behaved oddly and were mistreated by people in the streets. To make people more accepting of those with psychological illnesses the public needed to be included in treatment efforts. This vision of treating psychosocial problems was linked to the aspirations of the Sandinistas and their revolution. RSMH, described as a source of inspiration to the members of ASMEN, would support this goal by helping to find jobs and meaningful tasks for the members of ASMEN. It was estimated to be possible to organize two seminars every year on the topics interesting the members. In 1990 ASMEN bought a house in Leon for running the activities of the organization. In the house they planned to start a small production of children's clothing to be sold to the big hospital in Leon. They also planned to start a small carpeting production. A few Swedish items were to be used in the production. With the support of Denmark a workshop for carpeting was built in Managua, and Denmark would help the people in Leon start this same activity. Ideas on making keys and ketchup were afloat, and a cafe was to be started. 21 Behind these aspirations were four facts: 1. The rate of unemployment in Nicaragua was very high-50 percent at times. 2. Income generating was seen as the method of autofinancing. 3. There seemed to be no options of economic support to ASMEN from the government. 4. The Swedish grants were supposed to help create and strengthen ASMEN, but not to be everlasting. In 1993 the prognosis for Nicaragua was less optimistic. There was a growing rate of poverty and therefore a more dangerous situation for people with psychosocial problems. Many mentally ill people were treated, as they were the causes of the decrease in the well- being at large. In 1994 the government cut social budgets, leading to less medical treatment for psychosocial problems. Medicine was no longer free and the CAPS had lost half its staff. The lack of laws in the fields of social and medical treatments was observed. ASMEN was trying to get a room for treatment for people with psychosocial problems in the hospital in Leon. The hospital would agree only if the patients could take care of their own treatment. ASMEN held seminars on the future and the most important tasks to be targeted. Foremost was the task of getting jobs. This was partially achieved by the activities in the little workshops in the organization. Good advisers were needed to develop the clothing operation. The carpeting program was running but had yet to turn a profit. The cafe functioned well, and an agriculture operation was considered for the future. For ASMEN members leisure and recreation activities were scarce. One suggestion was to buy a television set for the ASMEN house. Guitar and painting classes were requested. The members saw the ASMEN excursions as a great success. ASMEN was becoming more independent. In 1996 RSMH transferred financial control to the organization and educated its members in how to run an organization. ASMEN had its own farm and local radio program. Some of ASMEN's male members worked in the 22 carpeting workshop and were improving their skills. The problem was to sell the products. The production of clothes was unsuccessful, but there was reason to hope for the future. Despite ASMEN's success the level of control of medication has been almost destroyed by rising prices and the falling purchasing power of Nicaraguans. And then came Hurricane Mitch, the catastrophy of the autumn of 1998. RSMH and other Swedish organizations for people with disabilities raised money to help their counterparts in Nicaragua. RSMH reevaluated and concluded that it was too early to withdraw its support to ASMEN because the organization needed more time to become totally independent. Staff are developing a plan for running the activities effectively and setting realistic goals. Institutions thatprovidedsupport RSMH is a nongovernmental organization (NGO) and has been supported by SHIA and Sida in this project. Type of support RSMH supports ASMEN with grants, allowing the group to buy equipment. RSMH also provides technical instruction through Swedish voluntaries. Implementing agency ASMEN is an NGO in Leon that aspires to go national. Project objectives RSMH have been supporting ASMEN in order to reach the following aims: * Develop and strengthen the organization with the aim of making it capable of advocating and influencing policy reforms in Nicaragua. * Support personal development of ASMEN members, their access to education, recreation and jobs. In other words, their rehabilitation and reintegration. * Raise awareness of the real situation for the mentally handicapped and their psychosocial problems. RSMH hopes to make an impact on institutions, authorities and political bodies. 23 Develop ASMEN's contacts with other organizations, both nationally and internationally. Specific goals for 1999-2000: * Train self-help groups to function without a professional aid. * Create a national organization or a national network. • Transfer the total responsibility of the running of the farm from the Swedish to the Nicaraguan part. * Maintain ASMEN and its activities. Type and number of beneficiaries The project targets people with mental handicaps or psychosocial problems. In the group there are both women and ex-combatants. In 1960 ASMEN had 60 members; in 1996 it had 230. Project size With the exception of three years this is a large-scale project-defined as bigger than the SHIA average. The amount of grants or aid is determined by actual project costs. Table A.2 Project size and cost (kronor) Year Project cost Average project cost Size 1990-91 33,000 187,804 Small 1991-92 186,200 138,000 Large 1992-93 138,000 173,333 Small 1993-94 181,000 164,000 Large 1994-95 279,000 170,000 Large 1995-96 (18 months) 425,000 225,000 Large 1997 343,400 117,692 Large 1998 178,200 221,641 Small Activities The activities planned for 1999-2000 include: 24 1. Increase efficiency on the board. Increasing the number of board members to reach greater stability and continuity 2. Develop computer capabilities in administrative routines. 3. Increase the role of lawyers to help develop and amend the ASMEN constitution. 4. Maintain the house, office, and locality for reunions and social activities for the members. 5. Maintain the cafe, the carpet and clothing workshops, and continue education in music, computing, and other activities. 6. Hold reunions, annual meetings, excursions, fiestas. Recruit new members and conduct an opinion poll of members. 7. Produce brochures, programs for the local radio, stories for newspapers. Raise awareness among politicians and the general public. 8. Work with other local organizations and people to create a national organization. Develop relations with similar organizations in neighboring countries. 9. Train others to start and maintain self-help groups. 10. Work to stop Swedish support in 2000. Implementation arrangements SHIA has used a coordinator for all projects in Latin America. The office is in Managua, and there has thus been a strong emphasis on the projects in Nicaragua. The coordinator has been working with POSCAL, Union Latinoamnericana de Ciegos, Fundacion Braille de Uruguay, Associaci6n Nacional de Sordos de Nicaragua, ASMEN, OCN, the city of Managua, HANOPREM, ANDALUE, UNPADE. Swedish coordinators include The Association of the Swedish Deafblind, SRF, Swedish National Association of the Deaf, RSMH, The Swedish National Society for People with Mental Handicaps, TPBs, and Bistandsgrupp (the assistance group at the State Library of Talking and Braille Books for the Blind). This special arrangement with the coordinator ends June 30, 1999. Before this the 25 project was run the same way as other projects, with the person at SHIA situated in Stockholm with the rest of the Swedish staff. Monitoring and impact evaluation The Swedish and Nicaraguan groups have worked together closely. People from RSMH frequently visit Leon and there has been at least one trip from Leon to Sweden. Many travel reports have been written and the project is often discussed in the RSMH journal Revansch. The person responsible for the Latin American region at SHIA collects data on the project. There has not been any total evaluation of this project yet. The contacts for RSMH have been at the national office. In Nicaragua the contacts are at the ASMEN office and the SHIA office in Managua. Major constraints on implementation sustainability Hurricane Mitch was the biggest constraint in this project. The catastrophe destroyed the soil of the ASMEN farm and with it the possibility of further autofinancing. Mitch put a lot of mentally handicapped Nicaraguans in a troublesome situation and created many new psychosocial problems. The major constraints before the Mitch catastrophe were strongly linked to the general political, social, and economic crises in Nicaragua. The resources allocated by the government to solve the psychosocial problems have drastically decreased from 1990 to 1998. This signifies that ASMEN is growing in an unfavorable social environment. Conclusions The project has given people with psychosocial problems greater control of their lives. RSMH support has helped ASMEN and its members, but cannot solve the larger problems that cause the people to become mentally handicapped. A decrease in the number of people institutionalized was the first sign of success. However, the general trends remain unfavorable for the mentally handicapped. The successes are not linked to the changing of the Nicaraguan ways of treating the psychosocial problems of the mentally handicapped, but rather to the strengthening of ASMEN. 26 When the Sandinistas were in power the emphasis in treating psychosocial problems was transferred from institutions in hospitals to open psychosocial centers. This trend continued into the early 1 990s-with the help of RSMH-thanks to a diminished tradition of institutionalization, organization of the masses in the Sandinista apparatus to actively participate in mental health treatment, and open centers at the provincial level. Later in the decade, however, the purchasing capability of the Nicaraguans fell, unemployment rose, and the social budget tightened. These together broke the trend. And these were the social circumstances under which ASMEN worked. ASMEN developed many important activities for its members. It allowed them to work on a farm and in small carpeting and clothesmaking workshops. They have created meaningful daily activities for people who would otherwise be without. However, the project cannot finance itself. But it was not far from doing so and definitely can earn more income in the future. Overall the project has stabilized, but its independence is constrained by the social, political, and economic crises in Nicaragua, as well as the effects of Hurricane Mitch. Continued support is essential to restoring ASMEN to its early 1998 level. 27 The Swedish Association of Neurologically Disabled and the Nepal Disabled Association In 1991 the Swedish Association of Neurologically Disabled (NHR) started a project in Nepal with two main goals: building a center for vocational education and introducing the CBR. The center was formally inaugurated in 1995; the responsibility of running it was transferred to the Nepal Disabled Association (NDA) in 1998. The center did not perform as well as expected and was closed. The CBR programs commenced in three villages in the Dhanusha district and three villages just outside of Katmandu. On the whole the CBR activities have developed nicely. Many people with disabilities have received medical attention, training, technical devices, and education. Some can support themselves with the help of small loans. And some now earn income to support their families. In 1991 programs for basic needs were implemented. These programs addressed health care, family planning, and mother and child-care. Another major ambition of the project has been strengthening NDA. This can be accomplished by organizing people with disabilities targeted by the CBR activities. NDA, the Swedish National Association of the Deaf (SDR) and The Nepal National Federation of the Deaf and the Hard of Hearing (NNADH ) have started a movement in the CBR to target deaf people. Thus the teaching of sign language has been integrated into the project. The CBR programs have been growing. In 1998 the programs included villages in Pokhara, Kailali and more villages outside of Katmandu (Tokha). In the project's first years the general situation in Nepal was somewhat troublesome. Assistance and foreign credits covered 60 percent of infrastructure development. The second largest source of income in the state budget was tourism. There was also a shortage of food. Many people with disabilities lived in rural areas and needed support to maintain themselves. Nepal was one of the poorest countries in the world. According to NHR there were approximately 540,000 people with disabilities in 1984. The causes were congenital injury or injury at delivery (29 percent), illness (59 percent), accidents (18 percent). Most of the treatment was paid for by private individuals or 28 local or international organizations-democratization of Nepal in the early 1 990s led to more enthusiasm for helping people with disabilities. Before 1990 there were no organizations composed of people with disabilities. But there were some made up of advocates for people with disabilities-NDA was one-and some had economic support from the government and advised the government on educational matters. In 1993 CBR activities were in full swing-more people with disabilities could work and earn income, females learned to make clothes, technicians learned how to make equipment for people with disabilities, and parents learned how to raise their children with disabilities. CBR programs also included physical rehabilitation, vocational training, and mainstreaming children with disabilities into schools. In 1995 courses for the deaf becarne part of the CBR program. In 1997 and 1998 the focus on women with disabilities in Nepal intensified. A group of women with disabilities founded a group in Kailali. The project is still running in 1999-2000 with support from Sweden, but there is confidence that the activities can continue even without Swedish support. Now NHR supports the CBR programs, but are changing the activities and spot to be targeted. NHR wants to focus more on women and children and develop more of the connection with the deaf. Furthermore NHR would like to help NDA become an organization owned by the users. Institutions that provided support NHR is a Swedish NGO. SHIA and Sida have supported the project. The economic resources have been transferred bilaterally. Type of support The resources have been transferred in the form of grants. But in the projects there has been a distribution of loans. In the programs there has been instruction in making devices for people with disabilities, which could be seen as technical assistance. 29 Implementing agencies in country The most important of the partners in Nepal has been NDA, an organization that aims to raise awareness of the importance of prevention measures and rehabilitation programs. NDA advises families of people with disabilities. In 1991 NDA had only three people with disabilities on its central board of 17. The Swedes tried to convince their partners of the importance of putting people with disabilities into positions of power in the organization. In the early years of the project NDA took its responsibility for implementing activities from its committees for the project. Project objectives The goal of the project is to empower people with disabilities and their families and to enable them to achieve social equality. The empowerment should improve the situation within the famnily, society at large, and in the organization. The project also aims to raise awareness of the challenges of women with disabilities and their children. Goals for 1999- 2000 include: 1. Continue to develop CBR programs. 2. Discontinue support to the center for vocational education. 3. Intensify NDA development. 4. Target and recruit groups of females. 5. Produce pamphlets and information on the situation of women. 6. Organize a conference to discuss the situation for women with disabilities. 7. Start withdrawing old CBR programs. Type and number of beneficiaries Data from 1993 and 1994 showed that 524 people with disabilities had been reached by the project. On the whole, the beneficiaries are the people with disabilities in villages where there are CBR programs. The awareness-raising activities target politicians and other people of authority. 30 Project size This is a large-scale project in the SHIA framework. Table A.3 Project size and cost (kronor) Year Project cost Average project cost Size 1990-91 83,000 187,804 Small 1991-92 385,900 138,000 Large 1992-93 422,000 173,333 Large 1993-94 603,000 164,000 Large 1994-95 167,000 170,000 Small 1995-96 (18 months) 571,000 225,000 Large 1997 213,000 117,692 Large 1998 283,100 221,641 Large Table A.4 Swedish Association of Neurologically Disabled Nepal project, 1999 budget (kronor) Katmandu/Tokha CBR 23,000 Kailali/Shreepur CBR 32,000 Kaski/DihkurPokhari CBR 26,000 CBR for new villages 103,000 Special resources for women and children 20,000 Training of personnel and leaders 26,000 Central CBR-administration wages 60,000 Transport/maintenance 49,000 Total 374,000 Costs of project in Sweden 37,400 Total 411,400 Activities Current project activities in Nepal include basic rehabilitation (medical attention, training, and the use of devices) and vocational training and loans without interest The money will help create income-generating small firms. These CBR activities are being carried out in the valley of Katmandu (Tokha), Kailali (Shreepur), and the district of Pokhara (Kaski DokhurPokhari). And education and recruiting are underway in four more villages. 31 Implementadon arrangements The national body of NDA runs the project, but activities are community-based and there is a push to empower all users. Monitoring and impact evaluation NDA, NHR, and SHIA are collecting data. In 1993-94 Swedish consultants conducted an evaluation and concluded that CBR programs were performing well. On the other hand the consultant pointed to the efforts to build a center and recommended less emphasis on that part of the project. In 1998 a comprehensive evaluation concluded that SHIA and NDA should continue to work together. NDA is a strong, well-respected organization in Nepal, and support from SHIA and NHR has enabled NDA to build a strong foundation for further CBR work. NDA should be the leader in CBR in Nepal. According to the evaluation team equal opportunities and full participation have different meanings in Nepal then in western countries. Less individualistic than western countries, Nepal's priorities are social development within the family, education, and income. Meeting the needs and expectations of people with disabilities and their families' is in the evaluator's view the most important tool in changing attitudes towards people with disabilities. Negative attitudes toward people with disabilities still prevail. More than 99 percent of people with disabilities do not receive any assistance. They are often illiterate and unable to work-usually depend on their families. Organizations need to combat ignorance, fear and superstition at all levels. In Asia, CBR is more a part of a community development strategy than a rehabilitation outreach program. People with disabilities need to be able to earn income and contribute to family agricultural work. Many parents of deaf children are not interested in school for their children because the economic benefits of sign language are not obvious. But the self esteem of those that have been to school seems greater than that of children who have not. In 1998 there were two qualified physiotherapists and 30 assistant physiotherapists. They were all employed in government hospitals. There were four speech and audiology 32 specialists and no occupational therapists. In CBR there are 500 workers who have some training. If the employed person is competent, volunteers can contribute effectively. Major constraints on implementation sustainabiifty The project has been going since 1991. There is hope that it will survive even without support from Sweden. Seen from the perspective of the whole period 1991 to 1998 there have not been any major constraints. But there have been some smaller failures like the training center that closed and conferences that had to be held a year late. NHR and SHIA have kept the contacts on the Swedish side and NDA on the side of Nepal. Conclusions The cooperation between NHR and NDA has mainly focused on running CBR programs in Nepal. This project has been growing rapidly and has improved its target groups' ability to control their lives. It has helped people with disabilities get vocational training and start small firms, and it has included the deaf in CBR activities. Furthermore it should be noted that focusing on women in CBR programs and income-generating activities has been successful. The experience from the cooperation between NHR and NDA is in the context of organizational support. The partners in Nepal have been capable of expanding their activities and improving their economic resources and level of work. In the project there are positive experiences of cooperation with other organizations and different target groups in Nepal. NDA has strengthened its position in Nepal as a result of the CBR programs it runs. Long-term support of NDA seems to work as it should according to SHIA principles. The CBR programs have been combined with small-scale income-generating projects, allowing some people with disabilities to contribute financially to their families. NHR strives to include people with disabilities at all levels of its programs and noted that results improve with greater participation. 33 Swedish Association of the Visually Impaired, Fundacion Braille de Uruguay, and Union Latinoamericana de Ciegos The close connection between the Swedish Association of the Visually Impaired (SRF), Fundacion Braille de Uruguay (FBU) and Union Latinoamericana de Ciegos (ULAC) has a 15-year history. FBU is a foundation in Montevideo, Uruguay that produces, lends, and distributes books and other materials in Braille and as talking books. ULAC's members are the organizations of and for the blind in the different countries in Latin America. Since the same person was president of FBU and ULAC during most of the period described in this survey, the place of managing projects in the two entities has been the same. The development of the activities has been steadily growing through all the years and the product quality is excellent. In its 1990-91 annual report SHIA made two points about Uruguay that are still valid: In the early 20th century Uruguay was a highly developed country, especially in the social area, often called the Switzerland of South America. But Uruguay's income depended primarily on animal products, and when prices dropped the country lost its basis for a welfare state of the European model. Education and general knowledge in Uruguay, however, is still much higher than that of most countries in the third world. The Uruguay of the 1 990s has a very limited social sector. The organizations for people with disabilities do not receive any economic support from the government and must depend on assistance from abroad. FBU has not thus far had any sufficient economic support from Uruguay, and has instead relied on resources from ONCE, Christoffer Blindenmission from Germany, the Norwegian Organization of the Blind (NBF) and SRF. The same can be said of ULAC. Initially SRF noted that FBU is a very active mechanism with 30 employees (many of whom are visually impaired). They produce material in Braille and cassettes and distribute them all over Latin America. With the help of a Swedish volunteer a monthly magazine on cassette was started. With second-hand cassettes employees copied the material and with 34 technical equipment from Sweden drastically improved the sound quality. All the sufficient knowledge in operating the machinery was at hand or transferred. In 1991 Cara a Cara became the first journal in Braille for blind women in Latin America. In 1992 staff produced 10 issues, made 700 copies of each, and distributed them to individuals and libraries all over Latin America. Readership was high since the magazine was passed around ainong blind females from Mexico and Cuba in the north to Argentina and Uruguay in the south. In 1994 production capacity increased and FBU produced 350 new talking books, two talking magazines, and some programs for radio. There was a focus on making material accessible for blind students by putting the books onto cassettes. One thousand books were borrowed and lent each month. Braille magazines were distributed to 450 institutions all over Latin America, libraries, and schools on a steady basis. Furthermore there were approximately 2,500 individual subscribers and readers. The FBU production is financed from more sources than Sweden and there are a lot of magazines apart from the ones mentioned here, explaining the difference in the above figures on subscribers. In 1996 Cara a Cara had grown to 900 subscribers and w as third in readership among FBU publications. The trend of increased production of the magazine for blind females was linked to the growing attention on female topics in ULAC. Compare with annex 1 and the conference in Buenos Aires in 1994. In 1996 the rate of talking books was 1,800. The books were lent, donated or when possible sold for making copies all over the continent. At this stage SRF financed the development of a word processing program for computers built on the idea of being closely connected to the Braille system. In late 1998 the level of talking books in the library of FBU was approximately 3000. In 1997 there was a leadership training course for the blind women in ULAC. ULAC hopes to build a mobile school for vocational training for blind women in Uruguay and Argentina. 35 IRstitutions thatprovided support SRF is an NGO that has worked with SHIA and Sida on this project. Two local branches of SRF have participated and contributed to the financing of the project. There has not been any coordination of assistance on the Swedish side. Support from outside of Sweden came from ONCE, Christoffel Blindenmission, and NBF. Type of support Economic resources have generally been transferred to FBU and ULAC as grants. What appeared to be loans were really quick money transfers in response to urgent needs to prepay for planned activities. SRF and SHIA have been buying equipment to be used in FBU productions. Technical assistance focused on transferring the know-how of using the equipment. Imp1ementing agencies in country FBU is an NGO with no economic support from the government. The effects of FBU's work is felt on a regional level. ULAC is a regional organization in Uruguay. Project objectives The project's basic aim is to empower blind Latin Americans to take control of their lives. SRF aims to: * Support production of material for the blind in Braille and cassettes. * Improve the quality of cassette production. * Support a magazine for blind women in Braille and cassettes. * Support leadership training for women in ULAC. * Improve the situation for blind women in Latin America. * Develop computer programs adapted for blind people who speak Spanish. * Develop new methods of rehabilitating blind women in Latin America Type and number of beneficiaries The beneficiaries are blind people in Latin America (and those who for other reasons are unable to read ordinary print texts). Their numbers can only be estimated: there are more 36 than 2,500 subscribers and readers listed at FBU and more then 250 institutions, libraries, and schools. FBU products are geared toward females and children. The books and magazines for children and students are high quality and brilliantly laid out. Project size Swedish support in the late 1990s was only intended to cover 10 to 15 percent of FBU's costs. This project is large-scale. Table A.5 project size and cost (krooner) Year Project cost Average project cost Size 1990-91 150,000 187,804 Small 1991-92 221,100 138,000 Large 1992-93 239,000 173,333 Large 1993-94 106,000 164,000 Small 1994-95 571,000 170,000 Large 1995-96 (18 months) 379,000 225,000 Large 1997 811,300 117,692 Large 1998 472,900 221,641 Large Activities FBU activities include: * Producing material in Braille and on cassette. * Writing articles to be used in production. * Running a library in cooperation with other libraries for the blind in other parts of the world. * Providing psychosocial help in adapting to blindness and loss of sight. * Providing programs for early stimulation for families with visually handicapped children. * Keeping statistics and data on the subscribers and users of FBU services. * Developing computer programs for the blind and visually impaired. * ULAC activities include: • Holding reunions, assemblies, and special meetings on special topics. 37 * Preparing materials for these events. * Providing leadership training courses. * Awarding scholarships. Implementation arrangements On the SHIA side there has been a regional coordinator in Managua. In SRF the responsible parties work at the national office, and in some cases at the regional branches in Sweden. FBU and ULAC officials work in Montevideo. Monitoring and impact evaluation SRF and SHIA have been in regular contact with FBU and ULAC. There have been many visits to Uruguay and some to Sweden. A follow-up study was conducted in 1995 and the conclusions were that the work and activities of FBU were very good and very appropriate for a lot of blind people in Latin America, but that financing was a problem since resources came from the outside. The author of this survey wrote an evaluative study on this project in late 1998 and drew very similar conclusions. The author reported that the activities were performed very well and generally everything works as it should. Major constraints on implementation sustainability The major constraints are linked to financing. There has been substantial support from Germany, Spain, Norway, and Sweden. The Norwegian support was withdrawn and there are signals of decreased support from Germany. There are efforts to raise the level of internal support from Uruguay, but this support will never be as large as that from Europe. Conclusions This project is unlike the others in this study. The Swedish side is not the biggest donor and there has not been any coordination between the Swedes and other donors. The project has substantially improved the blind's ability to control their lives by giving them access to materials in Braille and on cassette. The competence in Montevideo 38 has made it possible to increase the number of activities. The only problem is long-term financing-the overwhelming amount of resources comes from Europe rather than Uruguay or Latin America. Even if the Spanish and Swedish organizations will maintain their support there has to be a local solution as well. This is also necessary because FBU provides a lot of educational material to visually handicapped pupils and students in ordinary schools. Through its steadily growing capacity to produce Braille and talking books and magazines, FBU has improved the situation of the visually impaired in all of Latin America. It has lent, copied, or sold reading materials to institutions, schools, and libraries all over the continent. This along with the system of passing around material from reader to reader has helped substantial amounts of the visually impaired raise their level of cultural access. 39 The Swedish Association of Neurologically Disabled, the Polish Association of Multiple Sclerosis, and the Polish Association for Neuromuscular Illnesses The project in Poland is very new in the SHIA context. It was integrated into SHIA in 1998. Contact among The Swedish Association of Neurologically Disabled (NHR) and its Polish partners began in the case of The Polish Association of Multiple Sclerosis (PTSR) in 1989 and with The Polish Association for Neuromuscular Illnesses (TZCHM) in 1993. In 1992 NHR directly applied for support from Sida to start a project in Poland. NHR wanted to empower Polish multiple sclerosis patients. The idea was to hold conferences and disseminate pamphlets printed in Polish on the real situation of MS patients. The first activity was a visit by polish physiotherapists to NHR in Sweden. Forty physiotherapists were to be educated in Swedish thinking on disabilities and their methods in the field. NHR had noted that the political changes in east Europe were affecting people with disabilities as well as the rest of the population. The people with disabilities seemed to be organizing themselves, but were not able to participate in Polish society. There was a lack of devices, a lack of rehabilitation, inaccessible enviromnents, little social infrastructure, and lots of prejudice against them, even among those with disabilities. The International Federation of Multiple Sclerosis Societies asked NHR to help the federation's Polish equal create an organization. The target group for the project was people within the polish association, and professionals in rehabilitation and treatment of multiple sclerosis. The polish association hoped to increase its presence in Polish society through local branches. It learned about Sweden's intellectual framework for disability. NHR looked forward to long-term cooperation with its Polish partners. NHR also wanted to improve cooperation between Sweden and Poland in developing wheelchairs and other devices. NHR claimed that the physiotherapists in Poland had good theoretical knowledge, but in practical matters they still needed improvement. On the other hand, NHR noted that classes were quite popular and many of the professionals wanted to learn more. 40 In 1997 NHR said that everything that had been planned had been implemented, although implementation did not always occur on schedule. The goal of improving the Polish organization of multiple sclerosis patients had been in motion and there were hopes for a similar development with the four-year-old cooperation with the Polish Association for Neuromuscular Illnesses. One problem in the organizations in Poland was the rural situation. NHR and its Polish partners had broadened their awareness activities by organizing a course for architects using the Standard Rules as education tools. Furthermore NHR had developed new and good relations with Estonia and Ukraine through the project. Institutions that provided support NHR is a Swedish NGO that works with SHIA and Sida. Type of support The Polish organizations received grants. Implementing agencies in country PTSM and TZCHM. Project objectives The project's goals were to: * Develop a youth organization for the mobility impaired, with members preferably from both PTSR and TZCHM. * Conduct a seminar on legal rights. * Conduct a course for neurophysiotherapists. Type and number of beneficiaries NHR estimates that 75,000 people in Poland have multiple sclerosis. They can be divided into three groups: wheelchair users, those with mobility impairments, and those without. The targeted groups are members and potential members of the organizations. But 41 NHR also finances educational work for physiotherapists and others who help people with multiple sclerosis. Project size This has been a large-scale project since it became a part of SHIA in 1998. If the project had been integrated into SHIA from the start it would have been a large-scale project all the way. The costs of the project in its two last years were 605,179 kronor. Table A.6 Project size and cost (kronor) Year Project cost Average project cost) Size 1990-91 0 187,804 0 1991-92 0 138,000 0 1992-93 0 173,333 0 1993-94 0 164,000 0 1994-95 0 170,000 0 1995-96 (18 months) 0 225,000 0 1997 0 117,693 0 1998 357,400 221,641 large Activities Project activities include: - Creating a youth organization for the mobility impaired, with a conference. * Holding a seminar on legal rights that covered the rights of an organization of people with disabilities, laws on rights in Poland on health care and welfare, laws on accessibility in constructions, laws for the labor market * Holding a course for 40 physiotherapists in neurological illnesses. Implementation arrangements There have not been any special implementation arrangements in this project. The activities are carried through by the Swedish and Polish partners. At SHIA there is a person who focuses on all Eastern and Central Europe projects. Data on projects is kept in SHIA and at NHR national headquarters. 42 Monitoring and impact evaluation Project monitoring has taken place at NHR headquarters and is now the responsibility of SHIA. There has not been any major evaluation yet on the Polish project NHR. Major constraints on implementation sustainability The constraints noted above are the result of the general situation in Poland rather than the project itself. Conclusions The project has improved treatment and rehabilitation within Poland. It has helped create and empower two important and influential Polish organizations. By transferring the ways of thinking on disability from Sweden to a neighboring country this project can evolve into a full partnership in the future. The project has increased the opportunities for people with disabilities in Poland to control their lives. Experience shows a rapidly developing society with success in empowering people with disabilities. The Polish organizations for people with disabilities have grown and taken a strong position in society. The new trend in the Polish case is to focus more on laws and influencing both lawmakers and professional groups like architects. The project has also spurred development of better treatment and rehabilitation. 43 Swedish National Association of the Deaf and Associaci6n Nacional de Sordos de Nicaragua The Swedish National Association of the Deaf (SDR) project was started in 1989 to help the Associaci6n Nacional de Sordos de Nicaragua (ANSNIC) buy a house. ANSNIC was founded in 1986 and originally named Asociacion Pro Integracion y Ajuda al Sordo. In the earliest years it was dominated by hearing teachers and parents of the deaf. The deaf themselves became dominant beginning in 1990. In the past, deaf people were considered mentally retarded. As late as 1990 the oral "read my lips" method of teaching children was common in Nicaragua. In the early 1990s ANSNIC used video tapes and TV spots to inform people of the effort to develop a national sign language. The great leap forward came in efforts to produce and publish a sign language dictionary in Nicaragua. The result: students now learn sign language in school. There are also great efforts to teach deaf adults to read and write. All Nicaraguans, regardless of hearing, learn sign language. In the mid- 1 990s a group of four and an Argentinean consult documented the signs used in Nicaragua and wrote the dictionary. This process was widely noted in the media of Nicaragua and had positive effects on the general image of the deaf. However, with a national sign language also came demand for more interpreters. At that time ANSNIC, like all of Nicaragua, was recovering from Hurricane Mitch. ANSNIC now receives support for leadership training organized both at the national and local levels. ANSNIC also receives support to run its office. InstitutDons that provided support SDR is an NGO working with SHIA and Sida. Type of support Support has been given in grants. 44 Implementing agencies in country ANSNIC is an NGO that works to influence the authorities and government of Nicaragua. Project objectives The project's goal is to improve the situation for deaf people in Nicaragua by recognizing sign language as the first language of the deaf. Goals for 1999-2000: * ANSNIC will become a strong and independent organization of the deaf. * The education of the deaf will improve and the deaf will be better integrated into the labor market. * Sign language will be formally be recognized. * Deaf children will learn sign language. * Regional cooperation between organizations of the deaf will improve. Type and number of beneficiaries The target group is all deaf people in Nicaragua. In 1990 ANSNIC had 800 members out of an estimated 12,000 deaf Nicaraguans. Project size This project has always been large-scale. Table A.7 Project size and cost (kronor) Year Project cost Average project cost Size 1990-91 200,000 187,804 Large 1991-92 678,000 138,000 Large 1992-93 494,000 173,333 Large 1993-94 636,000 164,000 Large 1994-95 1,266,000 170,000 Large 1995-96 (18 months) 1,413,000 225,000 Large 1997 591,500 117,692 Large 1998 643,100 221,641 Large 45 Activities Activities planned for 1999-2000: * Complete and publish the second part of the dictionary. * Produce more didactic material for children. * Conduct regional courses for the improvement of the deaf in the region. * Develop relations with government authorities. * Start to create regional offices for the national organizations of the deaf. Implementation arrangements There have been visits from Sweden to ANSNIC, among them a trip by youngsters from the vocational school for the deaf in February 1993. In 1990 the president and the international secretary of SDR visited Nicaragua and noted the huge problems facing the deaf. They concluded that it was important to work on sign language. The deaf, however, named earning money through work as the most important task to be targeted. In early 1998 the international secretary of SDR visited Nicaragua on a follow-up mission, and said the situation had drastically improved since 1990. The development within the organization was much better, but there were a lot of problems caused by lack of resources. There is growing respect for sign language, especially among professionals, and the number of interpreters and teacher has increased. There has not been any complete evaluation of this project apart from regular monitoring. Major constraints on implementation sustainability The project has existed since 1989 with great success. The major constraint has been Hurricane Mitch. Other major constraints in both Nicaraguan projects have been the decrease in the social sector. The regional coordinator of SHIA's work in Latin America has been situated in Managua, so the contact between ANSNIC and SHIA have been very close. Conclusions The creation, documentation, and publication of a dictionary of the national sign language in Nicaragua has increased respect for sign language and raised the level of 46 influence of ANSNIC. Changing attitudes among authorities has also been achieved by the project. The growing respect for sign language made the Ministry of Education change the policy of special education to teaching sign language instead of using the oral method. Children and adults deaf who uses sign language as their first way of communication can now better control their lives. The project is experiencing a kind of take-off after five years. Inititally the emphasis was on creating a national sign language for Nicaragua. This seemed to be interesting for the general public as well as the government. The publication of a dictionary became the stepping stone to a much stronger position for the organization and for the deaf in general. The general situation in Nicaragua and the difficulty for deaf people to earn money through work are long-term problems. The consequences of Mitch are also an obstacle for ANSNIC. 47 The Swedish National Society for People with Mental Handicaps, CAMR, PTOMH, NGO Organization for Diyalape, Institute for Training and Alternative Development Strategies, Young Men's Buddhist Association, and Regional Social Ministry in Galle Organizations for people with disabilities have succeeded in winning some government attention, and a social ministry was created in 1948. It was not until 1981 that rehabilitation became a focus and a national plan of action was developed. In the early 1 980s UNICEF, Sida, Christoffer Blindenmission, and Helen Keller International launched a cooperative effort with Sri Lanka and many CBR programs began. The projects were run in accordance with the WHO manual. The war in the northern and eastern provinces was an obstacle to social development. Some organizations within SHIA chose the district of Kalutara, 40 kilometers south of the capital Colombo, to adapt the CBR model to local circumstances. The program began with an investigation into the number of people with disabilities and the level of existing services. Investigators found that services were not targeting those most in need, nor were most people aware of the services. The organizations decided to try to raise awareness. Compared to other third world countries Sri Lanka has good health care. Kalutara has three good general hospitals and 16 more in the rural areas. In running their project SRF and Swedish Federation of Disabled People (DHR) in 1992 discovered that there were not only people with visual impairment and mobile impairments, but a lot of mentally retarded as well. Therefore they wanted participation from The Swedish National Society for People with Mental Handicaps (FUB). A Buddhist monk donated a house to the project in Kalutara. That building became a rehabilitation center for children. It was an improvement on an ambulatory unit. People formed networks through the center: parents met each other and medical experts. In 1998 FUB was involved in more than one program in Sri Lanka. It strove to support health care and education in a multisectoral way. It joined forces with SRF, SDR, 48 and DHR to launch a project promoting rehabilitation, education, awareness raising, and support to similar organizations. Cooperative efforts among the ministry of labor, social welfare, and organizations of people with disabilities aim to develop programs of the CBR type in the district of Galle, and develop programs for women with disabilities in the district of Anuradhapura in northern Sri Lanka. A rank and file member of FUB, Mr. Kare Karlsson found a prison in Galle that held convicted criminals and mentally handicapped children. He decided to improve the terrible conditions of the building in 1995. The mentally handicapped children were moved into a new home in 1996. The house for the 30 mentally retarded women in Galle was built in 1998. During the year support has been given to 10 different organizations of people with disabilities with the aim of improving their capabilities in awareness raising. This funding should make an impact on their ability to influence both national and regional programs. In 1998 the CBR activities in Galle were extended, taking account of experiences in Kalutara where SHIA had turned over responsibility to the local authorities and organizations of people with disabilities. A special foundation was established to finance an institution for rehabilitation and support of deaf pupils. Connections were made with the Association of Women with Disabilities to start planning a special support group for women and children in areas affected by the war in Sri Lanka. The data below concentrates on the programs run exclusively by FUB. Institutions that provided support FUB is an NGO that works with SHIA and Sida. It is an organization of and for the mentally handicapped. Mentally handicapped people and their parents serve on the local and national boards. In all the activities the mentally handicapped have a translator who can intervene whenever there is a lack of comprehension. 49 Type of support The support has mainly been in the form of grants, no loans. Equipment and assistance has been bought locally under the supervision of the national coordinator in Sri Lanka. Implementing agencies in country In Sri Lanka there is a national coordinator appointed by SHIA who is responsible for all projects in the country. This is a special department of SHIA. Project objectives The projects have three objectives: 1. Start and establish a rehabilitation center for mentally handicapped children in Kalutara. 2. Build a home for mentally handicapped children in Galle. 3. Build a home for mentally handicapped women. Type and number of beneficiaries In 1992 volunteers walked from house to house in Kalutara searching for mentally handicapped children. They found 3,700, most of whom likely received no medical attention. Professionals from FUB screened the children and found that 400 were only mildly handicapped and should have been in school, 187 were severely mentally retarded and had disabilities. With this experience FUB is doubtful in recommending the same procedure in Galle. The amount of individual attention raises expectations that are impossible to satisfy. In the house for mentally retarded women there should be approximately 30 females. Project size Although small in 1998 and 1994, the project has generally been large by SHIA standards. If the cooperation with the other organizations was incorporated in the figures the project would have been large the whole time. 50 Acdvities The rehabilitation center was launched, the housing for the mentally handicapped children constructed, and in 1998 the house for the mentally handicapped women was constructed. All three programs have become well known in their environment and have helped raise demand for services by parents and relatives. Table A8 Project size and cost (kronor) Year Project cost Average project cost Size 1990-91 0 187,804 0 1991-92 0 138,000 0 1992-93 0 173,333 0 1993-94 276,000 164,000 Large 1994-95 1,129,000 170,000 Small 1995-96 (18 months) 343,000 225,000 Large 1997 169,400 117,690 Large 1998 140,800 221,641 Small Implementation arrangements The children's home is being transferred to a local foundation that is also responsible for village water supply. The home for mentally handicapped women has been transferred to the Young Men's Buddhist Association, and the rehabilitation center is linked to a foundation run by organizations of people with disabilities. All money transferred to the projects has been under the responsibility of the national coordinator and no payments have been made without a sufficient report on their use. The reporting to Sweden from Sri Lanka has been without problems. Monitoring and impact evaluation The name SHIA is known and well respected in Sri Lanka. The SHIA symbol is used frequently in rallies and special days for people with disabilities, and has been shown on national television. Despite this exposure, public attitudes toward people with disabilities are slow to change. There has been no evaluation exclusively for FUB prograns. But from the FUB and SHIA standpoint, the monitoring process is working well. 51 Major constraints on implementatioo sustainabiity The sustainability of the FUB projects is probably the best of all those described in the appendix because these projects are sheltered by local foundations. Contacts in Sri Lanka are kept by the coordinator, and in Sweden by SHIA and the national headquarters. Major constraints in the work in Sri Lanka listed by FUB: 1. Recruiting and keeping personnel at the rehabilitation center; they should have more education. 2. Problems in transferring the latest treatments from Sweden to Sri Lanka. Authorities resist organizing seminars with Swedish specialists. 3. Voluntaries receive low wages. 4. School officials resist advocating inclusion unless they receive economic resources. 5. The organization for the mentally handicapped is run by people with little respect- for their charges. Conclusions The projects are successful, but limited in time and resources. The activities give mentally handicapped people and their families greater control over their lives. From the beginning the project has benefited from the goodwill and competence won by other Swedish organizations of people with disabilities and SHIA. FUB has been working with rehabilitation in Sri Lanka at the community level. Unlike NHR, when FUB started its projects SRF and DHR were already in Sri Lanka, and the SHIA office was already well known and had a good relationship with authorities. SHIA had been advocating linking services to local organizations with the aim of sustaining established services. FUB believes that good employees are essential to good service. The national coordinate in Sri Lanka has been given as an example of successful recruiting. 52 SRF's Regional Branch in Holland and the Vietnam Blind Association SRF has had good relations with the Vietnam Blind Association (VBA) since the early 1980s. VBA suggested building a large rehabilitation center in Hanoi in the style of a similar center outside of Havana, Cuba. SRF had doubts because similar centers founded in other countries have failed. SRF decided to work with the Nordic countries to look for other means of rehabilitation. After more discussion VBA suggested a program based on CBR, and in the 1990s SRF and VBA began the project. It was to concentrate on two provinces in the north and south of Vietnam. This project applies the CBR model to Vietnam. It focuses on teaching teachers. CBR programs include vocational training. In this case this applies to the traditional crafts of Vietnam. In later years the project added sports to the curriculum. VBA had a branch in north Vietnam, but nothing in the south. Thus efforts to create southern branches of VBA were included into the project. Today there are VBA branches all over Vietnam. Launching the project required more time than planned as all parties camne to a better understanding of the project. SRF insisted on writing the agreements with VBA instead of signing together with the State of Vietnam. The visually handicapped were better integrated into society in the north than the south. Wounded in the war, North Vietnamese had great support from the public and the government. Some blind people made strong efforts to participate in the war. Many southern Vietnamese were wounded by chemical warfare, and thus received less public sympathy. Today it is appropriate to say that the majority of the blind is included in Vietnamese society. Instituffons that pro vided support SRF is an NGO and has cooperated with SHIA and Sida in this project. International Blind Sports Association and Organisacion Ciegos de Espafna (both NGOs) have had limited involvement. 53 Type of support The support has been mainly grants, with some equipment and educational resources. Implementing agencies in country VBA is a part of the one party state and therefore not an NGO, although it intends to become one. Project objectives Project goals are to: * Improve the VBA's ability to represent the visually handicapped. * Improve living conditions for the visually handicapped, especially in rural areas. * Provide the visually handicapped (especially in rural areas) access to education, rehabilitation, vocational training-means of earning money in the labor market. Goals for 1999-2000 include: * Stop Swedish support to CBR programs in Ninh Binh and Tien Giang. * Launch CBR programs in Quang Ninh and Ngho. Include a foundation for loans for income-generating projects. * Launch a pilot on inclusion of visually handicapped children in ordinary schools. * Teach the visually handicapped in Laos how to run an organization. * Start VBA branches in Ninh Binh and Tien Giang. * Evaluate the CBR programs in Ninh Binh and Tien Giang. Type and number of beneficiaries Beneficiaries are the visually handicapped Ninh Binh, Tien Giang, Quang Ninh, and Nghi An. In the future people in Laos will be included. Classes for new rehabilitation teachers in 1999 included 12 visually handicapped and four people with sight. In each rehabilitation class there will be 10 visually handicapped participants. In the preparatory classes for inclusion in ordinary schools there will be 10 children and two teachers. Eighty percent of the group from Laos will be visually handicapped. 54 Project sie With the exception of the first and last year in the period, this project is large by SHIA standards. Considering the goals and activities for the years to come it will remain large. Table A.9 Project size and cost (kronor) Year Project cost Average project cost Size 1990-91 0 187,804 0 1991-92 0 138,000 0 1992-93 153,000 173,333 Small 1993-94 469,000 164,000 Large 1994-95 195,000 170,000 Large 1995-96 (18 months) 571,000 225,000 Large 1997 154,800 117,692 Large 1998 144,100 221,641 Small Activities In 1999-2000 Swedish support should cease for the CBR programs in Ninh Binh and Tien Giang, in accordance with project agreement. The CBR programs in Quang Ninh and Ngho An will commence with a three-month education programn for future rehabilitation teachers appointed by the VBA. The program will present pedagogical methods for adults in mobility, Braille, everyday living skills, and vocational training. It will also include basic instruction in some sports. The pilot program for including visually handicapped children in schools will begin with nine months of preparatory classes for pupils and teachers. Children will develop leisure activities related to the preparatory classes. In year two class size will double. Ten days of classes for the visually handicapped in Laos will be conducted by an organization of the blind. The classes will address the situation for the blind in Laos, how to run an organization, and strategies of action. 55 SRF and VBA will evaluate the programs in Ninh Binh and Tien Giang. The evaluative effort will include follow-up work with former pupils and teachers asking them to compare the current situation in light of goals set before the classes. Implementaton arrangements During fall 1993 and spring 1994 a Swedish consultant was appointed to make the initial budget, plan of action, and conduct the first classes. Thereafter all activities have been run by VBA. Monitoring and impact evaluation There have been many visits from Sweden to Vietnam and from Vietnam to Sweden. A 1996 evaluation concluded that the activities closely match the plans and should therefore be continued. The evaluator recommended that more attention be paid to Braille and income- generating activities for the visually handicapped. Major constraints on implementation sustainability The project has been running for more then five years, and things are going according to plan. The Vietnamese government supports the programs, relieving worries about sustainability. Norway, Denmark, and Australia have shown interest in this type of program. Conclusions The project is successful. VBA has grown and the visually handicapped are better integrated into the targeted provinces (including blind children into regular schools). The visually handicapped affected by the program have greater control of their lives: they have learned to play sports for the blind, they have been integrated into the labor market through vocational training in traditional crafts, they have more skills in general. The strong link to the government in Vietnam has been an asset in implementing the project. 56 The Association of the Swedish Deafblind, Deafblind organizations in Kenya, Uganda, and Tanzania The project was originally set in motion in 1988, when a field worker from The Association of the Swedish Deafblind (FSDB) disseminated information on deafblindness throughout the region. Forming a group for parents of students at Kabarnet, a school for the deafblind, was another early measure. There were plans for a vocational training workshop for the students and a basic education program for teachers at schools for the deaf. Working groups formed at all the appropriate schools in 1990 as a result of the project. The aim was to give each child the special skills he or she needed. The pupils were divided by diagnosis for greater efficiency. The Swedish field worker helped teachers transfer knowledge from Sweden on didactic methods for deafblindness. Representatives from six African countries and experts from Sweden and Denmark held a conference. As early as 1990 a special committee for the deafblind was started in Kenya. The committee was composed of government authorities and members of organizations of the blind and deaf. They made a list of priorities that included identifying adult deafblindness and raising awareness. The committee formally belongs to the organization of the deaf in Kenya. In 1993 the workshop for vocational training was begun. All pupils at the schools of the deaf were surveyed and many eye problems were discovered. Those pupils needed extra attention. In 1994 special services were developed in a district in the western part of Kenya. During the same year consults from Sweden and the United States shared knowledge with teachers at the school for the deafblind in Kenya. This was a collaboration between the Kenya Institute for Special Education, FSDB, SHIA, and Hilton/Perkins School for the Blind. The publication Deafblind News was started by the project and is still running. In October 1994 Kenya's Conmmittee of Deafblind participated in the conference of the deafblind with the Committee of East Africa. The headmaster at the Kabanet School in 57 Kenya was elected chairman. There was a general conference for the East African region in Tanzania, and teachers from Uganda and Tanzania improved their skills by visiting the Kabanet School. The East African Newsletter was started. In 1998 the East African Committee began activities. This was strongly connected to the creation of the Committee in Uganda as well as efforts to improve education in Uganda. In 1998 Uganda held a seminar on communicating with congenital deafblind people. The same year two teachers from each country visited programs in other countries. During the last years the focus has been on families whose children are returning from school to live at home. Institution thatprovided support FSDB is an NGO that works with SHIA and Sida. It is a sovereign entity apart from organizations of the blind and the deaf . Type of support Support has come in the form of grants, with some knowledge sharing by field workers and consultants from Sweden and the United States. Implementing agencies in country The Ministry of Education plays a small, formal part. Resources do not pass through the ministry, they go directly to the people and institutions implementing the activities. Project objectives The chief goal is to give the deafblind in Kenya, Uganda, and Tanzania greater control over their lives, and thereby improve their quality of life. The following steps will help realize that goal: * Create an organization of the deafblind. * Create national committees in Kenya, Uganda, and Tanzania. * Create a committee of the deafblind in Africa. * Use the committees to improve education for deafblind children. 58 * Expand services for the deafblind in East Africa. * Identify adults with deafblindness. * Target adults with deafblindness who could be part of an organization of the deafblind. * Find new means of individual improvement. * Find new forms of rehabilitation for adult deafblind people. * Find ways to educate and support parents of deafblind children. * Educate and improve the performance of teachers for the deafblind. * Create opportunities for teachers to visit other programs in other countries in the region. * Follow up the investigation on sight in Kenya's schools for the deaf. Type and number of beneficiaries The target group is the deafblind, and subsequently their parents and teachers. In Kenya in 1996 there were 55 deafblind pupils and 33 teachers. In Kenya, Tanzania, and Uganda there were 80 children in schools. Deafblind News was publicized in 120 items in 1994. The newsletter was given to parents, deafblind children, teachers, schools, and other relevant institutions. In 1994 an identifying mission in a district in Western Kenya found eight deafblind people exposed to programs of individual development. Project size Throughout the period this has been a very large project by SHIA standards. Table A.10 Project size and cost (kronor) Year Project cost Average project cost Size 1990-91 0 187,804 0 1991-92 0 138,000 0 1992-93 0 173,333 0 1993-94 398,000 164,000 Large 1994-95 602,000 170,000 Large 1995-96 (18 months) 902,000 225,000 Large 1997a 1,156,300 117,692 Large 1998a 1,133,300 221,641 Large 59 a. The figures for 1997 and 1998 cover only general activities in East Africa and not those targeted for Kenya exclusively. A ctivities Activities already in motion include: * Seminars for parents. * Teacher education, including a workshop and manual for communicating with deafblind children. * Committees of deafblind in Uganda and Tanzania. * Inauguration of the Uhuru school. * Programs for all graduating deafblind pupils and their families. * Seminars for parents. * Rehabilitation for the adult deafblind. * Future activities include: * Support for the new school in Nairobi. * A conference at the regional level on matters concerning the adult deafblind. * Discontinuation of the activities in Nakuru. Implementation arrangements When the FSDB field worker left he was replaced by Penny May Kanau, a local coordinator and administrator. She has been working on a very limited level from her home office. Josef Shiroko coordinates vocational. activities for the elderly pupils. Employing local people is not the norm in SHIA. Monitoring and impact evaluation The national headquarters of FSDB in Sweden and SHIA staff handle monitoring. Many visits from Sweden have occurred through the years. Major constraints on implementation sustainability Because there is only a small number of deafblind people, there will never be large organizations for them. But for the same reason costs will not be as high as for other disabilities. 60 Conclusions The project has given the deafblind in East Africa greater control of their lives. Development of educational methods, increased identification of deafblind, improved services for deafblind, establishment of committees in Kenya, Uganda, and Tanzania, and newsletters and the like have all contributed to this accomplishment. This small group is now on the agenda for authorities, families, and society. The project proves that numbers aren't everything: a small group of people with disabilities can be targeted and substantial results achieved. But long-term financing is a problem, as it is for other projects. 61 REFERENCES Books Ahlstrom, Eva (ed). 1996. Folkrorelsernas bistand 1994/95. Arsbok Stockholm: Forum syd. (I11 pages; ISBN: 91-972645-2-0). Karisson, Veine and Magnusson, Ake (ed). 1992. Sverige-Latinamerika-forbindelse och samarbete. Stockholm: Latinamerikainstitutet. (248 pages; ISBN: 91-85894-27-3). Karlstr6m Bo. 1996. Det omojliga bistaindet-en systemkritik av offentligt bistand. Second ed. Stockholm: SNS Forlag. (159 pages; ISBN: 91-7150-608-X). Sandberg, Svante, (ed). 1991. Uppbrott: om u-lander, bistand och solidaritet infor sekelskiftet: en debatt antoologi. Stockholm: SVS; Svensk volontarsamverkan. (253 pages; ISBN: 91-970926-5-7). Wieslander, Anna. 1993. Var kom skruvmejseln ifran? Stockholm: Sida. (286 pages; ISBN: 91-586-0113-9. de Vylder, Stefan. 1995. Om fattigdomen och rattvisan i varlden. Stockholm: Forum Syd. (87 pages; ISBN: 91-972545-0-4) Reports Hampshire, Barry. 1996. "Survey of braille printing facilities in Africa." TeleNova AB. Report prepared for SRF. SRF, SHIA headquarters, Stockholm. Husveg, Arne Johan. 1997. "Final Evaluation of the Norwegian Association of the Blind and Partially Sighted (NABP) in Nicaragua 1985-1996." NABP. 97 04 12. NABP, Oslo, and SRF headquarters. IDPA. 1999. Minutes of the First International Disability Presidents Alliance (IDPA); Joint Collaboration Project Meeting Held on 2 February 1999 in Cape Town, WBU, SRF headquarters. Lundman, Karl Erik. 1998. Utvardering; gissel eller mojlighet? Diakonia maj 1998, SHIA headquarters, Stockholm. NHR. Reports on Nepal (Swedish and English). SHIA headquarters. NHR. Reports on Poland and applications to Sida, (Swedish). NHR headquarters. Nordquist, Kaj. 1996. A brief outline of the structure and work of SRF. RF, SRF headquarters. Nordquist, Kaj. 1994. Ciegos Cubanos. SRF Stockholm, SHIA headquarters, Stockholm. Nordquist, Kaj. 1998. Connocer y mejorar. SHIA, SHIA headquarters, Stockholm. 62 Nordstrom, Kerstin, Andersson, Anders, and Bolander, Lars. 1998. Ratten att fora sin egen talan Slutrapport frAn TED Gruppen till SHIA's styrelse. SHIA, SHIA headquarters, Stockholm. RSMH. Reports on Nicaragua (Swedish and Spanish). SHIA headquarters. SDR. Reports on Nicaragua (Swedish). SHIA headquarters. SHIA. Agreements between SHIA and all the projects in appendices (Swedish, English, and Spanish). SHIA headquarters. SHIA. 1999-2000. Ansokningar till SIDA fran SHIA 1999-2000. (applications to SIDA). SHIA headquarters, Stockholm. SHIA. 1998. Persons with Disabilities and Development Co-operation. 1998. SHIIA headquarters, Stockholm. SHIA. 1993. Objectives and Guidelines December 1993. SHIA headquarters, Stockholm. SHIA. 1990-1991. Annual Reports. SHIA headquarters, Stockholm. SIDA. 1998. Anvisningar fdr bidrag till enskilda organisationers utvecklingssamarbete med egeninsats; April 1998. SIDA, SHIA headquarters, Stockholm. SIDA. 1998. Anvisningar for SIDA:s st6d till enskilda organisationers samarbete i Central- och Osteuropa; September 1998. SIDA, SHIA headquarters, Stockholm. SIDA. 1998. SIDA's utvecklingssamarbete for barn och vuxna med funktionshinder; avdelning for demokrati och social utveckling. Sk6ld, Bertil Ulmeryd, Kjell. 1993. Participation in Society (11/11/93). Paper presented at the International conference on "Beyond normalization towards one society for all." Reykjavik, Iceland, June I - 3 1994. SRF, SRF headquarters. SRF. Reports on Uruguay (Swedish). SHIA headquarters. Teyes Blanco, Carmen y Zapata, Gretchen. 1992. Informe del viaje de estudio a Suecia; a Hans Kihlstrom RSMH, Suecia; de Leon 27 de Mayo 1992. ASMEN, SHIA headquarters, Stockholm. WBU. 1997. Draft Plan of Action for WBU Committee on the Status of Blind Women. WBU, SRF headquarters. 63 Social Protection Discussion Paper Series No. Title 0013 Survey of Disability Projects The Experience of SHIA, Swedish International Aid for Solidarity and Humanity 0012 The Swedish Pension Reform Model: Franework and Issues 0011 Ratcheting Labor Standards: Regulation for continuous Improvement in the Global Workplace 0010 Can Investments in Emerging Markets Help to Solve the Aging problem? 0009 International Patterns of Pension Provision 0007 Disability Issues, Trends and Reconmmendations for the World Bank 0006 Social Risk Management: A New Conceptual Framework for Social Protection and Beyond 0005 Active Labor Market Programs: Policy Issues for East Asia 0004 Pension Reform, Financial Literacy and Public Information: A Case Study of the United Kingdom 0003 Managing Public Pension Reserves Part 1: Evidence from the International Experience 0002 Extending Coverage in Multi-Pillar Pension Systems: Constraints and Hypotheses, Preliminary Evidence and Future Research Agenda 0001 Contribution pour une Strategie de Protection Sociale au Benin 9934 Helping the Poor Manage Risk Better: The Role of Social Funds 9933 Coordinating Poverty Alleviation Programs with Regional and Local Governments: The Experience of the Chilean Social Fund - FOSIS 9932 Poverty and Disability: A Survey of the Literature 9931 Uncertainty About Children's Survival and Fertility: A Test Using Indian Microdata 9930 Beneficiary Assessment of Social Funds Social Protection Discussion Paper Series continued No. Title 9929 Improving the Regulation and Supervision of Pension Funds: Are there Lessons from the Banking Sector? 9928 Notional Accounts as a Pension Reform Strategy: An Evaluation 9927 Parametric Reforms to Pay-As-You-Go Pension Systems 9926 An Asset-Based Approach to Social Risk Management: A Conceptual Framework 9925 Migration from the Russian North During the Transition Period 9924 Pension Plans and Retirement Incentives 9923 Shaping Pension Reform in Poland: Security Through Diversity 9922 Latvian Pension Reform 9921 OECD Public Pension Programmes in Crisis: An Evaluation of the Reform Options 9920 A Social Protection Strategy for Togo 9919 The Pension System in Singapore 9918 Labor Markets and Poverty in Bulgaria 9917 Taking Stock of Pension Reforms Around the World 9916 Child Labor and Schooling in Africa: A Comparative Study 9915 Evaluating the Impact of Active Labor Programs: Results of Cross Country Studies in Europe and Central Asia 9914 Safety Nets in Transition Economies: Toward a Reform Strategy 9913 Public Service Employment: A Review of Programs in Selected OECD Countries and Transition Economies 9912 The Role of NPOs in Policies to Combat Social Exclusion Social Protection Discussion Paper Series continued No. Title 9911 Unemployment and Unemployment Protection in Three Groups of Countries 9910 The Tax Treatment of Funded Pensions 9909 Russia's Social Protection Malaise: Key Reform Priorities as a Response to the Present Crisis 9908 Causalities Between Social Capital and Social Funds 9907 Collecting and Transferring Pension Contributions 9906 Optimal Unemployment Insurance: A Guide to the Literature 9905 The Effects of Legislative Change on Female Labour Supply: Marriage and Divorce, Child and Spousal Support, Property Division and Pension Splitting 9904 Social Protection as Social Risk Management: Conceptual Underpinnings for the Social Protection Sector Strategy Paper 9903 A Bundle of Joy or an Expensive Luxury: A Comparative Analysis of the Economic Environment for Family Formation in Western Europe 9902 World Bank Lending for Labor Markets: 1991 to 1998 9901 Active Labor Market Programs: A Review of the Evidence from Evaluations * The papers below (No. 9801-9818) are no longer being printed, but are available for download from our website at www.worldbank.org/sp 9818 Child Labor and School Enrollment in Thailand in the 1990s 9817 Supervising Mandatory Funded Pension Systems: Issues and Challenges 9816 Getting an Earful: A Review of Beneficiary Assessments of Social Funds °844 This paper has been revised, see Discussion Paper No. 9923 9814 Family Allowances 9813 Unemployment Benefits Social Protection Discussion Paper Series continued No. Title 9812 The Role of Choice in the Transition to a Funded Pension System 9811 An Alternative Technical Education System: A Case Study of Mexico 9810 Pension Reform in Britain 9809 Financing the Transition to Multipillar 9808 Women and Labor Market Changes in the Global Economy: Growth Helps, Inequalities Hurt and Public Policy Matters 9807 The World Bank Approach to Pension Reform 9806 Government Guarantees on Pension Fund Returns 9805 The Hungarian Pension System in Transition 9804 Risks in Pensions and Annuities: Efficient Designs 9803 Building an Environment for Pension Reformn in Developing Countries 9802 Export Processing Zones: A Review in Need of Update 9801 World Bank Lending for Labor Markets: 1991 to 1996 Summary Findings This paper reviews the work of SHIA, an umbrella association of Swedish organizations of people with disabilities, and derives lessons and good practices on disability-related activities. SHIA emphasizes supporting human rights while supporting better lives through investments. It accomplishes this in part by working closely with local organizations of people with disabilities; SHIA's strategy is to empower such organizations and thereby to empower people with disabilities. The paper demonstrates that effective partnerships are possible, the challenges of such partnerships, and the need to focus on technical assistance. Recommendations for the World Bank provide possible directions for Bank involvement in disability work HUMAN DEVELOPMENT NETWORK Abut1II ris