1. 1 Situation of people with disability in Kosovo 2002 – Report summary Situation of people with disability in Kosovo – 2002 Survey summary GRAVIR aslb, Handicap International, Situation analysis of people with disability in Kosovo – Final report, Brussels/Lyon, 2002. Financed by the Governement of Finland and Handicap International

2. 2 Situation of people with disability in Kosovo 2002 – Report summary Acknowledgment Authors of the survey GRAVIR asbl rue Papenkasteel, 144 – B 1180 Bruxelles gravir@skynet.be Edouard BOUFFIOULX (Gravir) Pierre CASTELEIN (Gravir) Guy HERIS (Gravir) Marc LEMORT (Gravir) With the collaboration of Raphaël de RIEDMATTEN (Handicap International) Luc NOREAU (Laval University - Québec) Christine ORVOINE (IFER - Rennes) Acknowledgment The survey was carried out by GRAVIR aslb in collaboration with Handicap International, with the support of associations of people with disability all over Kosovo in May 2002, especially HANDIKOS. This project was made possible through the financial support of the Government of Finland and that of Oxfam. We would like to thank all of the people who contributed to this survey, especially the people with disability who agreed to provide us with accounts of their daily lives, the interviewers and the local association officers. Edition (Results summary) Handicap International – Mission Kosovo, Pristina Handicap International – Head Quarter, 14 avenue Berthelot, F-69361 Lyon, Cedex 07, phone +33 (0) 4 78 69 79 79, fax +33 (0)4 78 69 79 94, contact@handicap-international.org Summary prepared by Raphaël de Riedmatten Presentation of GRAVIR GRAVIR is a multidisciplinary group for research and development of holistic rehabilitation models. It runs a network of European rehabilitation and training institutions in Belgium, France and Switzerland. GRAVIRs objectives are organized around the following main axes: trainings for professionals and teams with a social and health-oriented calling; partnership through active collaboration with, for instance, the International Network on the Disability Creation Process, INDCP (Ca), the research and development of assessment methodologies of computer software, and methods of assessing situations of disability.

3. 3 Situation of people with disability in Kosovo 2002 – Report summaryContents Objective and methodology………………………………..p. 4 Approach: the Disability creation process..……….......p. 5 Glossary and concepts …………………………………….p. 6 Description of the population………………………………p. 7 Main results.….……………………………………………..p. 8 Analysis of the results…………………….........................p. 9 Sense of the analysis………………………………….p. 10 Personal level…………………………………………..p. 11 Technical assistance and devices….........................p. 12 Social environment……………..……….……………. p. 13 Physical environment…………………………………. p. 14 Education……………………………………………….p. 15 Employment……………………………………………. p. 16 Leisure and social activities…………….…………….p. 17 Social policies…………… ……………………..…..…p. 18 Conclusion…………………………………………..……….p. 19

4. 4 Situation of people with disability in Kosovo 2002 – Report summary Objective and methodology Objective of the survey The survey aimed at getting more insight into the situation and the needs of people with disability in Kosovo. This study highlights the main obstacles they face in everyday life, as well as the factors that facilitate their daily lives. Methodological approach The survey methodology, Measure of the Quality of the Environment is based on the Disability Creation Process (see page 5), a comprehensive approach, which considers disability not as a fixed state, but as a process that limits the persons activities. This perspective is consistent with human rights and an equal opportunity approach to disability, as it highlights the importance of the role of the environmental factors such as equal opportunities law, rules of governing society and social attitudes. Population and method The data was gathered through a survey on a representative population of people with disability randomly selected (cluster method) all over Kosovo without any pre- selection in terms of their disabilities or any other criteria. This method included the selection at random of associations and structures possessing updated addresses files, as well as the selection at random of 400 people with disability within the selected files to get a final number of 391 valid questionnaires. Strengths and limits The Measure of the Quality of the Environment instruments strength lies in its different analysis levels. This method also has the advantage of taking the opinions of the people with disability directly into account. Therefore, the results represent the opinions and perceptions expressed by representative individuals with disabilities interviewed, which is its main strength, as well its main limitation. In addition, we do not have sufficient reference data on the whole population of Kosovo to allow us to identify or highlight differences between people with disability and people without disability. In the vast majority of cases it is therefore not possible to identify discrimination against people with disability. Pristina, Kosovo 2002

5. 5 Situation of people with disability in Kosovo 2002 – Report summaryApproach: the Disability creation process The Disability creation process model (International Network on the Disability creation process INDCP) © R. de Riedmatten - HI A comprehensive model The Disability Creation Process is an explana- tory model of the causes and consequences of disease, trauma and disruptions to a person's integrity or development. This model offers an interesting framework to allow the distinction between handicap situation aspects originating from the person and those originating from the environment. This process is based on an anthropological model of human development that applies to every human being. In this model, the disability is differentiated from the handicap by the social variable that separates the two. The handicap is considered as a disturbance in a persons life habits as a result of personal factors, impairment or disability, or environ-mental factors (obstacles). It is therefore a relative situation which varies according to the context and the environment, but which can also be modified by reducing impairment (medical care) and develops capabilities (rehabilitation) as well as adapting the environment (policies, elimination of physical obstacles).

6. 6 Situation of people with disability in Kosovo 2002 – Report summaryGlossary and concepts Glossary A risk factor is an element likely to cause disease, trauma or any other disruption to a persons integrity or development. A personal factor is a characteristic belonging to a person (age, sex, socio-cultural identity, etc.). Medical care and functional rehabilitation services can reduce the effect of impairment and reinforce capabilities. An environmental factor is a social or physical dimension which determines the organisation and context of a society: l A facilitator contributes to the achievement of life habits. Information for a change in attitude towards difference, anti- discrimination policies, accessible infrastructures are facilitators. l An obstacle hinders achievement of life habits. Discriminatory attitudes, inaccessibility of public buildings and atmospheric pollution can all be obstacles. l A factor without influence is an environmental situation or factor that has no effect on the accomplishment of a daily activity task. A life habit is a current activity or a social role promoted by the person or his socio-cultural context. It guarantees the persons survival and blossoming throughout his life. l A social participation situation means the full achievement of life habits. l A handicap situation is the partial or non-achievement of life habits resulting from the interaction between personal and environmental factors. Concept of «vulnerable» people People whose ECONOMIC situation is particularly precarious or poor according to the following criteria: 1. no income 2. no professional activity 3. no personal means of transport 4. a residence without a minimum level of equipment (water, electricity, …) This concept of economic vulnerability should not be confused with exclusion, as the social support network is not taken into account. Mental disability In this survey, this term covers two categories of people with disabilities, namely people who have primarily intellectual disabilities (mental deficiency) as well people who have mainly emotional or behavioural disabilities. Ramp in construction, Pristina, Kosovo 2002.

7. 7 Situation of people with disability in Kosovo 2002 – Report summaryDescription of the population Who answered the questions? l 64% the person with disability l 30% the parents l 2% the husband or the wife l 5% other relatives Gender ratio l 51% Males l 47% Females l 2% unknown Ages classes l 18% Children (0-15) l 23% Youths (16-25) l 46% Adults (26-60) l 13% more than 61 Distribution by type of disability l 79% with physical disability l 11% with mental disability l 6% with sensory disability Distribution by history of disability l 65% more than 11 years. l 22% from 4 to 10 years l 11% less than 3 years Ethnic distribution l 86% Albanians l 6% Serbian l 8% Other ethnic groups Geographic distribution by regions l 18% Gjilan l 8% Mitrovica l 17% Peja l 31% Pristina l 26% Prizren Distribution by type of environment l 58 % from rural areas l 42 % from urban areas An interview during the survey, Kosovo, May 2002. The study concerns a representative population of 391 people with disability with the following main characteristics. © R. de Riedmatten - HI

8. 8 Situation of people with disability in Kosovo 2002 – Report summaryMain results (significant obstacles and facilitators) Factors identified as facilitators to the achievement of life habits % of subjects - Attitude of your family 80 % - Your friends attitude towards you77 % - Support from the family68 % - Participation in political decisions (vote)61 % - Action of local advocacy groups61 % - Communication equipment58 % - Availability of technical aids for moving 56 % - Action of international advocates 53 % - The services provided by community bodies53 % - Access to, and quality of doctors51 % Factors identified as obstacles to the achievement of life habits - Winter climatic conditions (snow, ice,...)85 % - Accessibility of public buildings65 % - Non availability of technical aids 61 % - The accessibility of your dwelling54 % - The density of automobile traffic in you area56 % Entrance of a public building, Kosovo, 2002. Young man with father and mother, Kosovo, 2002. © R. de Riedmatten - HI

9. 9 Situation of people with disability in Kosovo 2002 – Report summaryAnalysis of the results (summary) Analysis of items by categories: From micro … … to macro environmental factors Ortho-prosthetic Centre, Pristina, Kosovo 2002 © R. de Riedmatten - HI Situations in Kosovo, 2002. Copyright: R de Riedmatten - HI

10. 10 Situation of people with disability in Kosovo 2002 – Report summarySense of the analysis Dimension of the analysis From the micro- to the macro environment, the conceptual diagram used for the analysis suggests a priority selection line within the following dimensions: The person: all the human, material and institutional resources providing therapeutic or rehabilitation action for the person The technical aids and assistive devices: all technical means for a person to act on his environment in spite of his impairment, to act on their micro-environment (wheelchair, assistance with food…). The human environment: the person with disabilitys family circle. These people can sometimes offer practical or psychological support. The physical environment: all equipment and ecological conditions forming the person with disabilitys environment (the home and its equipment, the public highway, climate, pollution, etc.). Education, employment market are the pillars of the socialisation process and means of social integration for a person with disability. Leisure activities represent means of socialisation which protect against the risk of social exclusion of people with disability, frequently excluded from employment and education. Social policies: the aim is to ensure the operation of human rights, regardless of the differences, including those associated with impairment, sex, age or ethnic origin. Add to this the necessity to introduce the necessary political gestures to contribute to the equalisation of opportunities (including suitable services, measures encouraging inclusive education and a social security system developed to fight against the social exclusion creation process). © Gravir, aslb, 2002

11. 11 Situation of people with disability in Kosovo 2002 – Report summaryPersonal level Limited personal incomes 55% of the respondents were in a precarious economic situation. Either they have no income or a minimum one (small pension or governmental support). Therefore we can consider the positive opinion of 50% as the one of people with a satisfactory income. The public health insurance programmes (UNMIK) are insufficient to cover the needs of the people interviewed. 28% of the respondents seemed to be satisfied as they consider these programmes to act as a facilitator but 31% consider them as obstacles and 30% consider them as neutral factors. Access and quality of health services l The services from doctors is valued as a facilitator for 50 % of the respondents. l The non availability of physical therapy is felt to be an obstacle (36%) or as having no influence (34%). l The access to medication and medical supplies is an obstacle (44%) and even more for the female respondents (55%) l The services of local solidarity networks outside the family have no influence. The results points out the absence of a comprehensive health care and social security system in Kosovo. Ortho-prosthetic centre, Pristina hospital, Kosovo, 2002

12. 12 Situation of people with disability in Kosovo 2002 – Report summaryTechnical aids and assistive technologies Unequal access to technical aids In general, the availability of technical aids for moving around (wheelchairs, cane…) is considered to be a facilitator (56%). Nevertheless l In rural areas the so-called vulnerable respondents have a negative opinion (63% obstacle) regarding this factor l This trend is stronger among the elderly vulnerable respondents (78% obstacle). l 75% of the people with higher incomes have a positive opinion (facilitator) of this factor The availability of technical aids for daily life is an obstacle for 52%. In the subgroup « vulnerable » it is even higher (70%). And it is 78% among the elderly vulnerable respondents. The availability of adapted beds, mattresses and postural aids is an obstacle for 61% of the respondents. In the rural areas, 77% of the vulnerable people have a negative opinion. The score increases among elderly vulnerable people (94% obstacle). The availability of appliances (prostheses, orthetics) is considered as a facilitator (42%) and as having no influence (44%), though few people responded. The availability of technical aid maintenance and repair services is assessed as an obstacle (44%). This results seem to confirm that material distribution programs conducted in the so-called emergency phase had an impact in covering basic technical aids needs. However, needs for more specific material, as well as repair services, remains problematic for most of the people interviewed, especially the elderly and vulnerable. On the other hand, the results show that no official technical aid repair services are available (except for prostheses and orthetics). Unfortunately, the results also confirm the fact that the most vulnerable people frequently do not benefit from the support networks established, as known and feared by professionals working in social action. In the present phase of reduction in emergency aid, the public health system should take over the responsibility of distribution of adapted material, and develop material repair services. Donated Wheelchairs, Kosovo, 2003.

13. 13 Situation of people with disability in Kosovo 2002 – Report summaryThe social environment Importance of the social environment In general, the attitudes of people around the person with disability are considered as a facilitator (80% facilitator). The approach of the social environment of the people with disability in Kosovo shows that the family sphere is very predominant. On that subject we need to distinguish the notion of support and the notion of attitude. Indeed, the category of items related to the notion of support is globally considered as having no influence by an average 45% of the respondents. In the subgroup of people who answered without the presence of relatives, this support is even more felt as a facilitator (The presence of a relative during the interview do not have an influence on the answer of the person with disability on that item). Nevertheless, if we focus on some items such as the support from family members living in Kosovo, one can observe that the family provide an important support (68% facilitator). The support from the members of families living abroad is, in general, considered as having no influence (41%). The support of other people around the person with disability like the neighbours, the friends, etc. is in general perceived as having no influence. Nevertheless, the greater the social distance from the family cell, the more the item is felt as having no influence. Boy calling and his supportive parents, Kosovo, 2002.

14. 14 Situation of people with disability in Kosovo 2002 – Report summaryPhysical environment (In)-accessibility : a major obstacle Accessibility of the place of residence. Having a dwelling that meets their needs (56% obstacle) and being able to access the various places in their homes (54% obstacle) raise lot of problems for the respondent. The obstacle is heightened by the shortage of technical services that can maintain the household fittings or adapt the lodgings to fit the persons needs (47% obstacle). Finances do not seem to be a decisive obstacle in this case. Accessibility of public buildings. The accessibility of public places is evaluated very negatively (65% obstacle) by all of the respondents. This negative opinion is more marked in Pristina, which is the administrative centre of Kosovo (74% obstacle). The elderly are particularly affected by this lack of accessibility. The accessibility of cultural venues does not seem to be a priority for most of the respondents, especially for the so-called vulnerable people. Accessibility of roads. The evaluation confirms the major difficulties that people with disabilities have, especially in winter, to get about (82% obstacle). The intensity of street lighting is also a major obstacle for 61% of the interviewees. This negative trend is more marked in rural areas (71% obstacle), as well as in the case of people with mental disabilities (67% obstacle). Weather conditions: It comes as no surprise that 85% of the interviewees consider winter weather conditions to be a major obstacle in their daily lives. This negative assessment drops to 57% for the summer time. It appears rather clearly that the roadways, footpaths, ground conditions, etc., are obstacles to the respondents. Many of them have great difficulty moving about, which is consistent with the large percentage of people with physical disabilities in the sample. Construction works, Kosovo, 2002. Example of an usual house, inaccessible.

15. 15 Situation of people with disability in Kosovo 2002 – Report summaryEducation Limited access to education The survey reveals that 38% of the 391 people with disabilities interviewed have not started or completed primary school ! 67% of the male and only 47% of the female respondents had access to education. The education level rate also varies with the type of environment, being 49% for the rural areas and 67% for the urban areas. 86% of the respondents with sensory disabilities (people with a visual or a hearing impairment) had education compared with 61% of the respondents with physical disabilities and 47% with mental disabilities. 26% of the interviewees have been to secondary school. However, the breakdown by type of disability shows that 73% of the physically disabled have had secondary education compared with 54% of those with sensory disabilities and 13% of those with mental disabilities. As for higher education, only 6% of the interviews have pursued their studies to this level. Quality of the education Given the low response rates for the items related to education, we must be careful in interpreting the results. They seem to indicate a relative degree of satisfaction with the quality of ordinary schooling (56%), whereas the opinion of special education is much more divided, with 42% holding positive opinions and 30% holding negative opinions of it. Only the school transport item reveals a more marked negative trend (57% obstacle). Paradoxically, the negative assessment is even higher for the urban (62%) than for the rural areas (45%). Inclusive education: an absolute priority The special institution existing for people with sensory disabilities can explain the differences regarding the primary educational level. In addition the accessibility problems pointed out can also explain the dramatic isolation of children with disability, especially in remote rural areas. Nevertheless, the overall results point out the dramatic situation of the people with disability concerning education. Integration of children with disability in schools should be one of the major priority of all the decision makers in this field in Kosovo. Adaptations in a school, which remain quite exceptional, Kosovo, 2002.

16. 16 Situation of people with disability in Kosovo 2002 – Report summaryEmployment Excluded from employment market 96% of the respondents were unemployed at the time of the survey 79% of the respondents have never had a paid job. The difficulty of getting a job is probably also linked to the difficulty of using public transport (60% rated this item negatively and 55% have no transport means of their own) and to the fact that in general the unemployment rate is high in Kosovo. For the items concerning work, we see that most of the people deemed vulnerable say that they do not know what impact an occupational activity might have on their daily lives. We might reason that this factor does not have an important place in their daily concerns since they never had the opportunity to work. Access to a job adapted to the respondents abilities and qualifications. Only 20% of the respondents answered the items that are specifically related to the job market. If we consider the 79% of the survey population who have never had a job, we can suppose that this 20% response rate corresponds to the people who have worked at some point in their lives. Of the people who answered these items, we see that 60% consider that access to employment is an obstacle in their daily lives. A field worker of Handikos Kosovo, 2002. During the interview of a young man jobless, Mai 2002.

17. 17 Situation of people with disability in Kosovo 2002 – Report summaryLeisure and social activities Limited social participation Cultural and recreational activities are considered as having no influence on the respondents daily lives. Radio and television are rated positively by more than 50% of the respondents People with sensory disabilities seem to be more satisfied with the recreational activities that local associations propose (50%), compared with 18% of the physically disabled and 4% of the mentally disabled. Local groups (womens groups, community centres, local associations, etc.). 53% of the respondents feel that these local groups make their daily lives easier. But 50% of the so-called vulnerable respondents do not know what impact this factor has on their lives and 29% of them evaluate it positively. This result in combination with the observations on the social and the physical environment, confirm the fact that people with disability in Kosovo are relatively isolated - within the comfort and the support of the family circle - from the rest of the society. The person with disability is often considered as ill, stuck by fate, hypothetically waiting to be cured and as such subject to overprotection and strong empathy. Some families will go as far as dedicating one of their members – usually a woman – to look after the needs of the person with disability. Boy living in a remoted areas, with his sister, Kosovo 2002.

18. 18 Situation of people with disability in Kosovo 2002 – Report summarySocial policies Need of political action to fight against exclusion Equal opportunity policies (access to education, work, housing, minimum income, etc.). Is an obstacle for 44% versus 14% who rate this item favourably and 25% believe they have no influence. The so- called vulnerable people are more divided on this issue, for 33% of them do not know what impact this factor has on their daily lives Actions of local people with disabilities advocacy groups. 61% of the respondents consider the actions of the local legal advocacy groups for the rights of disabled people to facilitate their lives. 54% of the so- called vulnerable people share this positive view. Actions of international associations defending the rights of people with disability. The actions of the international legal aid associations for the rights of people with disabilities are viewed positively by 53% of the respondents. Participation in political decision-making. When it comes to participation in politics, we see that 62% of the respondents rate this item positively and 9% expressed dissatisfaction with this connection. Participation in societal decision-making. When it comes to participating in economic and societal decision-making, 41% of the respondents feel that this factor has no influence on their lives (or are unaware of its impact (31%). The laws and regulations in effect are seen in as an obstacle by 42% of the respondents.

19. 19 Situation of people with disability in Kosovo 2002 – Report summaryConclusion Highlights of the Study l The facilitators are mostly social factors (such as support form the family, attitude of people, participation in voting) l The obstacles are usually physical factors (such as winter climatic condition, inaccessibility of the home and public building, poor condition of the ground) l Access to education and labour market are very problematic issues. l Access to rehabilitation services and technical aids trend towards obstacles or have little influence. l Isolation of people with disabilities, in the relative comfort – and control – of the family circle is unquestioned. The same applies to support provided by the relatives. l Inaccessibility of public services, as well as ground conditions, public transport, especially in remote areas, represents a significant obstacle to social participation. The last word… « Far from biomedical thinking, which reduces the people with disabilities to the sum of his or her impairments and disabilities, our study helps to show that people are in handicap situation because of obstacles in their social and physical environments. Our vision of people with disabilities must no longer paralyse them socially by labelling them as cripples but, rather, consider that the disability or handicap arises when the individual experiences situations of dependence, incompetence, non-productivity, etc., that are generated by the interaction of her/his personal and environmental determinants. The healthy individual manages to establish a tolerable way of functioning in her/his surroundings, despite impairments and disabilities, by either adapting to her/his environment or adapting the environment to meet her/his primordial needs. We hope that the survey findings will shed a more objective light on the real needs of people with disabilities in Kosovo and that, in their wake, recommendations will be made by all of the local and international players on the scene in order to improve the daily living conditions of the provinces people with disabilities.» The Gravir research team