Acknowledgments

Publisher:
Centre for Society Orientation – COD
Authors
Sonja dr Vasić
Radoš Keravica
Goran Lončar
Editor
Goran Lončar
Associates:
Local coordinators
Aleksandra Panović
Gorjana Gordić
Radovan Radulović

Human rights monitors
Novi Sad monitoring team – Andjelka Samardžić, Radovan Anton, Aleksandra Manja, Stevan Lukovnjak, Milesa Milinković and Suzana Ristanić
Belgrade monitoring team: Bojan Cvijanović, Bojan Milutinović, Svetlana Kovčić, Dragomir Milenković, Marija Milovanović, Milica Bugarčić, Nebojša Prokić and Aleksandar Prokić
Velika Plana monitoring team: Ana Marković, Danijel Miletić, Ivana Čitaković, Marko Šmigić, Milena Dabižljević and Miroslav Dragašević Media monitoring Sonja dr Vasić
Systemic monitoring
Ana Pavlović
Iva Danilović
Logistics and technical support
Bojana Glušac
Miloš Milovanović

Introduction

Project Information

Monitoring the rights of persons with disabilities in Serbia is a collabourative project supported by the York University in Toronto and the Swedish International Development Agency (SIDA). Monitoring the rights of persons with disabilities seeks to establish a sustainable mechanism for monitoring respect of the rights of persons with disabilities in the Republic of Serbia. In monitoring the rights of persons with disabilities the project uses the human rights based approach to disability, namely, systemic discrimination and social exclusion of persons with disabilities, and their vulnerability to poverty, unemployment, various forms of discrimination and inequality. Knowledge of human rights violations based on facts and evidence is an important tool for initiating social change, change of policies and programmes that would lead to the improvement of the status of persons with disabilities in the Republic of Serbia.

Methodology

In order to gain an insight into the human rights violations of persons with disabilities, the project uses a holistic approach to monitoring. The methodology consists of three elements and focus areas: monitoring of individual experiences, which included interviews with persons with disabilities, systemic monitoring with the aim to provide an overview of laws, policies and programmes and their weaknesses in the field of disability, as well as monitoring of the media in order to gain insight into the way the media report on issues relevant to persons with disabilities. Holistic approach to monitoring of human rights of persons with disabilities is based on fundamental principles of human rights contained in the Convention on the Rights of Persons with Disabilities: dignity, autonomy, non-discrimination and equality, participation, inclusion and accessibility and respect for diversity.

For the purpose of monitoring of individual experience, 60 interviews with persons with disabilities was completed in three places: in Belgrade, as the capital of the Republic of Serbia, in Novi Sad – the second largest city in Serbia and the main city of the Autonomous Province of Vojvodina and in the Danube district, municipality of Velika Plana with surrounding municipalities and rural areas. The aim of the interviews was to gain insight into the real experiences of persons with disabilities in exercising their human rights. Data was collected in face-to-face interviews, which were conducted by trained interviewers who are persons with disabilities as well. Interviews were recorded with dictaphone, retyped in text files and then encoded, using a coding scheme developed within D.R.P.I. methodology. They were finally analysed using software for qualitative analysis of data collected by the survey, NVivo10.

For the purpose of the report on the media monitoring, articles in the print media in the period from September 2012 until June 2013 were analysed, covering the topics of the rights of persons with disabilities. 900 articles from 53 printed media that have appeared during this period were processed. The subject of the analysis, beside topics that article refers, was the manner of the media reporting. Systemic monitoring was based on the problems arising from the interviews, analysing the regulatory framework, the effects of its implementation, finding flaws in the framework specifically designed templates for systemic monitoring that monitors the implementation of the Convention on the Rights of Persons with Disabilities and relying on the relevant reports of independent institutions and civil society organisations.

The key characteristic of monitoring individual experiences is direct involvement of persons with disabilities and their organizations in all stages of monitoring. Direct involvement of persons with disabilities in the process of holistic monitoring forms the basis for establishing sustainable monitoring of the rights of persons with disabilities. The interviewees are not only in the role of those who answer to the questionnaire, but through the conversation they are informed about their rights and opportunities available to them to exercise the rights. Application of semi-structured questionnaire in survey allows interviewees to talk about the things they want to talk and that are most important to them, rather than to answer briefly on the strict short questions. This method of interviewing provides clearer and more detailed insight into the experiences of people and violations of human rights and the principles of human rights.
It is believed that the “snowball” technique has the ability to overcome the risk of selection of people with similar characteristics. Field coordinators were asked to balance the sample, taking into account the type of disability by using their network of contacts of organizations that represent other types of disabilities. Persons with disabilities were involved in all aspects of holistic monitoring.

Structure of the Report

Monitoring individual experiences of persons with disabilities is a key part of the report; based on the results obtained through interviews the prerequisites for software processing and quantitative analysis of the data were acquired. Based on the interviews, an analysis of the most pressing issues and areas in which discrimination occurs for the majority of interviewees was made in order to detect repeating pattern of discrimination. This study analysed general principles of human rights – dignity, autonomy, participation, inclusion and accessibility, non-discrimination and equality, respect and diversity in the following key areas of life: social participation, information and communication, education, income insurance and support services, access to justice, privacy and family life, work and employment, health, habilitation and rehabilitation.

Based on the analysis of interviews, pressing issues for the examined persons with disabilities are social participation with a focus on accessibility, social protection, health care, labour and employment and education. Holistic report provided an overview of the most pressing problems from three perspectives: individual interviews with persons with disabilities (monitoring individual experiences), systemic perspective (monitoring legislation and policies) and the perspective of media coverage (media monitoring).

Holistic report represents an overview of the report on the monitoring of individual experience, systemic report and report on media monitoring.

Partner organizations involved in the project

The project envisaged close cooperation with local organizations of persons with disabilities. Field work in the monitoring of individual experiences is coordinated by: the South Bačka District Association of Dystrophy, Association “Talos” from Belgrade and Association “Will for Life” (“Volja za životom”) from Velika Plana. In addition to these organizations, which coordinated the fieldwork, the following organizations are directly involved in the project: Belgrade: Association of paraplegics and quadriplegics “Ada” Čukarica, the Muscular Dystrophy Association of Novi Beograd, CCSVI Alliance, Association of Persons with Cerebral and Infantile Palsy Belgrade. Novi Sad: Alliance of People with Paraplegia of Vojvodina, Ecumenical Humanitarian Organization/Resource Center for Persons with Disabilities, Union of People with Distrophy of Vojvodina, City Organization of the Blind.

Podunavlje district: Association of Persons with Developmental Disabilities “Key” (“KLJUČ”) Žabari, Association of Cerebral and Infantile Palsy of Svilajnac Municipality,
Inter-municipal Association of Persons with Paraplegia of Jasenica.

Part 1 – Accessibility

Content coming soon

Part 2 – Social Protection

During monitoring of individual experiences, as one of the most pressing areas for persons with disabilities has proven to be the insurance of income and support services, which are actually related to the sphere of social protection. Monitoring of individual experiences of persons with disabilities has shown that this area is of great importance for persons with disabilities since 85% of interviewees mentioned experiences in this field. Interviewees even reported 328 situations related to this field, interviewees had possibility to talk about positive and negative experience which they were faced with in particular domains. Even 71.67% of interviewees have no access to the necessary support services, 41.67% of interviewees have no possibility to influence decision-making and choice of service they will receive as well as its quality and scope. Consequently, the principle of dignity is in danger, for even 28.33% of interviewees.

2.1. Exercising the right to material allowance

For the interviewees who cited problems in this area, one of the most pressing problems is the cash benefits based on disability. The amounts allocated for the carer’s allowance in reality is not sufficient for a person to provide the service they need, and the amount of carer’s allowance is commonly used as a means of mere survival:

“…In general, my pension and carer’s allowance… are not enough for me to pay the services of the Home…”
Female, 38

“A country of eight million people is not able to regulate that minor, minimal disability pensions and cannot allow for carer’s allowance can to be as personal assistance, so you can pay that personal assistant – you can neither pay nor you can hire a personal assistant … If you hire a personal assistant, the law prescribes that the wife or brother and sister cannot be personal assistants. I think that such thing does not exist anywhere in the world. Here, with carer’s allowance we cannot even pay for five days of personal assistance.
Male, 66”

Also, for the beneficiaries who are trying to achieve the rights to receive cash benefits based on disability, it is not an easy challenge, as the criteria and documentation required for the exercise of these rights is extremely demanding, and the assessment of the need for the income depends on the assessment of the competent Medical Commission:

“After that I made a request for the carer’s allowance, but it was not approved … I was rejected once, then I was rejected a second time, and then for the third time I was invited to the Commission to Belgrade. I went there … and then a doctor looked at me and said: guys, are we so blind not to see that a woman is powerless. I mean, she has seventy percent of physical impairment, she is incapable of self-care. I can say that I was rejected quite often. And so, for the third time, I obtained that carer’s allowance by the Commission.”
Female, 57

“Well, the biggest problem is that doctors… who do the assessment… I think they misunderstood their role; they generally defend the system and state money from us. And their role is to assess whether we are capable or not, and not to tell that there is no money for such allocations, and under that excuse to you deny you your rights. The role of the doctor is to do the assessment, that is, to assess the state of your health, not to think about the state money primarily. Because of that I am mostly disappointed, as it is all about the money. No one even examines you properly … only once in my life I have experienced during the assessment of physical damage the real assessment, meaning he asked me to take off my shoes, to walk, examined me completely. They just look at the documentation, they do not examine you at all, and … I was rejected for the carer’s allowance for the third time, despite the fact that I am not able to take care of myself at all…they examine you, don’t say anything and when you receive the answer – you are rejected. To date it happened two or three times, even though I have all documents from all specialists who treat me. Meaning – two physical therapists, neurologists in Belgrade, neurologists in Novi Sad, electromyographic results, everything. Documentation supports the fact that I need carer’s allowance.”
Female, 50

In the internal regulatory framework for this area of a particular relevance is the Law on Social Protection25, which in the framework of its provisions stipulates significant principles of social protection, such as the principle of respect of the integrity and dignity of beneficiaries and the principle of non-discrimination. Part VII (7) of the Law on Social Protection stipulates the material support that can be exercised by beneficiaries, namely cash benefits, carer’s allowances, increased carer’s allowances and other types of the material allowances. The right on carer’s allowance is exercised by the persons who cannot meet their needs independently. The need for carer’s allowance shall be determined on the basis of regulations on pension and disability insurance.

Persons with disabilities, particularly vulnerable persons have the right to material assistance, which is designed at the national level or at the level of local self-government. At the national level, these are primarily carer’s allowances and support for vocational training and cash benefits. Procedures addressing the Centers for Social Work are always the same, but the procedures for obtaining local support remain within the jurisdiction of the cities and municipalities26. In the framework of the procedure, after the submission of the requested documentation, it takes about 30 days, with the possible prolongation of the same period (additional checking), to obtain the decision. There is a possibility to appeal the decision, and depending on the place in which rights are required in this area, the appeal will through the centers go to the city authorities, Provincial Secretary for Social Protection or the Ministry. Carer’s allowance is intended for persons who cannot meet their basic needs themselves. This type of assistance is obtained only if under other grounds of pension and disability insurance funds are not already allocated for this purpose. There is the possibility of exercising this right on the increased carer’s allowance if the person has a physical impairment of 100% or if there are more impairments and at least two exceed 70% and persons with permanent organic disorder of neurological and psychological type. The request for the carer’s allowance must be accompanied by a set of documents, such as the proposal for the expertise of physicians, the latest finding of the specialist, decision of the commission for categorization or earlier assessment of the first instance expertise.

The Rulebook on Education and Method of Work of the Expert Body of the Pension and Disability Insurance Fund 27 stipulates the formation and method of work of the assessment, and for the purposes of this report, it is crucial to point out that it is related to the exercise of the rights from pension and disability insurance, determines the content and form for determination of disability, and the Expert Body belongs to the Republic Fund for Pension and Disability Insurance. In addition to the Expert Body, there is a Control Body for control of assessments, opinions and ratings which gives the approval or comment on the findings.

Note #1

25 Law o Social Protection, ”Official Gazette of the Republic of Serbia“, No 24/2011

26 Rulebook on organization, norms and standards of the Center for Social Work “Official Gazette of the Republic of Serbia”, Nos 59/2008, 37/2010, 39/2011 – sec. Rulebook and 1/2012 – sec. Rulebook

27 Rulebook on Education and Method of Work of the Expert Body of the Pension and Disability Insurance Fund, “Official Gazette of the Republic of Serbia”, Nos 59/2008, 75/2008 – amd, 24/201 and 7/2012

Expert Body is required by the Rulebooks to apply uniform criteria for determining disability, physical impairment and the need for carer’s assistance. Article 6 stipulates that the Expert Body is consisted of the court expert, and the Control Body is also consisted of the court expert. In determining changes in the state of disability, the commission is consisted of three members, i.e. medical experts. It is important that the physician – medical expert is specialized in appropriate or related field in relation to the rights of beneficiaries. The finding of the Expert Body under Article 10 indicates the necessity of clear, logical, scientific and expert-based findings. Medical expert in the first-instance expertise is not allowed to perform the expertise in the second-instance, and the same applies to the Control Body findings.

The expertise refers to a number of areas in the disability assessment when a physician submits a proposal and, together with the request for the process initiation, starts this process. In the expertise in the first-instance expertise (Articles 28 – 36), it is testified about the existence and cause of disability, physical disability, the need for carer’s assistance, complete ability to work and the inability to live and work independently. In assessing the level of physical disability, the percentage is determined by referring to the Rulebook on Determining Physical Disability28. The finding, opinion and assessment are signed by the medical experts and medical experts – the controller. The expertise in the second-instance expertise of the exercising rights is performed by the expert body that is different from the first-instance expertise and it actually determines the regularity of the findings, opinions and assessments of the first-instance expertise of the exercising of rights. It is interesting to note that the Expert Body of the second-instance expertise provides technical assistance to the Expert Body in the first-instance exercising of rights. The finding, opinion and assessment are signed by the medical expert and the medical expert – the controller. In the assessment of the physical disability, assessments of the need for carer’s allowance, inability to work and change of the disability status relies on the expertise of disability, i.e. in accordance with the provisions of this Rulebook. Article 58 discusses about the control of the findings, opinions and assessments, and it is performed without examining the insured or the beneficiary unless the assessment on the basis of the previous documentation is necessary.

The right to adequate standard of living and social protection (Article 28 of the UN Convention on the Rights of Persons with Disabilities) processes one-fifth of the analysed articles using the analytical approach. The articles mention statistical data drawn from the statements of the government representatives, the findings of scientific research institutions and announcements from the non-governmental sector. In the article Unbearable Lightness of Survival on the Edge of Existence (“Nepodnošljiva lakoća opstajanja na ivici egzistencije”) (Daily newspaper “Danas”, February 25, 2013), a journalist Aleksandar Milošević quotes words of the State Secretary in the Ministry of Labour, Employment and Social Policy that “almost 95,000 families in Serbia, that is 250,000 individuals receive cash benefits” and that there are “33,000 users of public kitchen services and about 400,000 people who occasionally receive assistance of the Red Cross.” Since 70% of persons with disabilities live in poverty, and according to the latest statistics there are about 600,000 persons with disabilities in Serbia, it can be concluded that the allocation of the state is fairly large, but still insufficient for the basic needs of material allowance users. There are examples of how the state by subsidizing the cost of public transportation, TV subscription, utility bills, and the costs of fixed and mobile telephony is trying to improve the financial situation of persons with disabilities, but also that administrative procedures for the realization of these benefits are complicated.

Part 3 – Healthcare

Content coming soon

Part 4 – Education

Content coming soon

Part 5 – Employment

Content coming soon

Appendix – Holistic Alternative Report: Proposed Questions for Republic of Serbia

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Bibliography

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