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POLIO PLUS movement agaisnt disability

DISABILITY
THE MISSING PUZZLE PIECE

Baseline rewiev of the situation of people with disabilities in Macedonia

Skopje, 2012

Disability the missing puzzle piece Baseline rewiev of the situation of people with disabilities in Macedonia

Zvonko Shavreski, Chief Editor Elena Kocoska, Co - editor Autors: Dr. Vlado Karanakov, Vladimir Lazovski, Dusko Minovski, Elena Kocoska, Zaneta Poposka PhD, Zoran Dodevski, Katerina Kolozova PhD, Silva Pesik, Ljubomir Bubevski, vic, Natasha Postolovska, Maja Kojceva Master, Miki Ignjato Suad Zahirovic, Zvonko Shavreski, Tatjana Stankovikj-Belovska Concept and methodology contributors Saso Klekovski Daniela Stojanova Lecturer: Maja Kojceva, Master Proofreader: Slobodan Markovski Translation and interpretation: ESP - Translation and Interpretation agency Project team: Ilinka Staletovic, Kristina Naceva, Sanja Trajkovska, Boban Manevski, Vlado Nikolov

CONTENT
Acronyms ............................................................................................. Prologue ................................................................................................ Executive Summary .......................................................................... 7 9 11

1. BASIC CONSIDERATIONS .........................................


1.1. Methodology ........................................................................... 1.2. Position .................................................................................... 1.3. Context ...................................................................................... 1.4. Institutions .................................................................................

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15 17 20 22

2. GENERAL ISSUES .......................................................


2.1. Definition .................................................................................... 2.2. Terminology ................................................................................ 2.3. Statistics ...................................................................................... 2.4. Legislation .................................................................................. 2.5. Civil Organizations ....................................................................

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27 29 31 33 38

3. SPECIFIC AREAS .........................................................


3.1. Education ................................................................................... 3.2. Employment ............................................................................... 3.3. Health ......................................................................................... 3.4. Social Welfare ............................................................................ 3.5. (De) Institutionalization ............................................................. 3.6. Accessibility /Availability ........................................................... 3.7. Justice and Judicial System ........................................................ 3.8. (Non) Discrimination .................................................................. 3.9. Family Life .................................................................................. 3.10. Culture ...................................................................................... 3.11. Sport .........................................................................................

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49 53 58 63 70 74 80 83 87 90 93

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

4. CROSSCUTING .............................................................
4.1. Multiple discrimination ................................................................ 4.2. Political Participation .................................................................. 4.3. Universal Design .......................................................................... 4.4. Religion ........................................................................................ 4.5. Services of Support and Independent Living .............................. 4.6. Legal Capacity ............................................................................ 4.7. Information Technology .............................................................. 4.8. Media .......................................................................................... 4.9. Public Awareness ........................................................................ 4.10. Monitoring mechanism .............................................................

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97 102 105 107 109 113 116 119 122 126 129 131

In closing .........................................................................
Bibliography ..........................................................................

Disability - the missing puzzle piece

Acronyms
ESARM GDP CSO HIFM PDFM RM GRM ARM EU UN CRPD OP PDO MLSP MF MES MC ME MTC MISA OSCE UNDP UNICEF MCIC NCGE NCDOM CPD CIRa CSA DC IPPG SLRDPD LAP LSG PP PS SCMUS Employment Service Agency of Republic of Macedonia Gross Domestic Product Civil Society Organizations Health Insurance Fond of Macedonia Pension and Disability Fund of Macedonia Republic of Macedonia Government of the Republic of Macedonia Assembly of the Republic of Macedonia European Union United Nations Convention on the Right of Persons with Disability Optional Protocol Disability People Organizations Ministry of Labor and Social Policy Ministry of Finance Ministry of Education and Science Ministry of Culture Ministry of Economy Ministry of Transport and Communications Ministry of Information Society and Administration Organization for Security and Co-operation United Nation Development Fond The United Nations Childrens Fund Macedonian Center for International Cooperation National Council for Gender Equality National Council of Disability Organizations of Macedonia Commission for Protection from Discrimination Center for Institutional Development Center for Social Affairs Daily Center Interparty Parliamentary Group Systemic Law for the Rights and Dignity of People with Disabilities Local Action Plan Local Self-Governance Political Parties Primary School Ss. Cyril and Methodius University in Skopje

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

CC MNT HC PHI MRTV AJM BCRM IMF WHO LSP ADOM NGO LSCOF ARCCP LEPD LHP RIHP IPCYS SI IPRBB CPT LNPP IMH APDPM FSRPD

Center for Culture Macedonian National Theatre Health Center Private Health Institution Macedonian Radio and Television Association of Journalists of Macedonia Broadcasting Council of the Republic of Macedonia International Monetary Fund World Health Organization Law for Social Protection Association of Disability Organizations in Macedonia Non-Governmental Organizations Law for Civil Society Organizations and Foundations Association of Parents with Children with Cerebral Palsy Law for Employment of Persons with Disability Law for Health Protection Republic Institute for Health Protection Institute for Protection of Children and Youth Skopje Special Institution Institute for Protection and Rehabilitation Banja Bansko Company for Public Traffic Law for Non-Procedure Practice Institute for Mental Health of Children and Youth Skopje Association of Physically Disabled Persons of Macedonia Federation of Sports and Recreation of Persons with Disability of Macedonia SFDPM Sports Federation of Deaf Persons in Macedonia SOM Special Olympics Macedonia SEC State Election Commission Information-Communication Technologies ICT USAID U.S. Agency for International Development DPI Disability People International EASPD European Association of Service Providers for Persons with Disabilities EU European Union ANED Academic Network of European Disability Experts BANNET Balkan Ability Network for Disability EDF European Disability Forum

Disability - the missing puzzle piece

PROLOGUE
Review of a period
From philosophy of poverty ... - to poverty of philosophy
Prudon v.s Marks

Macedonia turns 20 years of its independence. Many urgent questions and priorities arose in this period in front of the young state: from denials of its right to statehood to negation of its national identity and the right to choose its own name, from military conflicts to economic blockades. In these turbulent years, little space was left for prioritizing the issues in the social sphere. In 2011, Macedonia ratified the UN Convention for the Rights of Persons with Disabilities, thus setting yet another priority - integration of and respect for the rights of people with disabilities. In less than two years, Macedonia is due to submit the initial report to the UN Committee on the Rights of Persons with Disabilities and to inform about its progress in implementing the Convention. But, implementation parameters require a review of the situation. This is exactly the role of this report - to act as a review of the situation of people with disabilities at the time of ratification of the Convention and as the basis for monitoring and evaluating the progress of Macedonia in the first years of its implementation. This, of course, is its primary role, but no less important is also the value of this review for independent researchers, for academic and scientific purposes, development of other projects and activities, as well as a tool for the institutions, civil society, media and all those who want to learn more about the position of persons with disabilities in Macedonia and the degree of exercise of their human rights. You might ask yourself Why Polio Plus? According to all surveys conducted so far, Polio Plus enjoys the highest index of confidence among citizens in Mace donia in comparison with the other civil sector organizations in general. With the above in mind, Polio Plus deserves to play the main role in the preparation of this report; and even more, it has a duty to compose it. Believe it or not, the development of this report started nearly five years ago. Due to the delay of two key studies this report on which this report was contingent, however, as well as to the short timeframe allowed for its development, the report was initially frozen to the point of being even temporarily abandoned afterwards. Meanwhile (with the support of the CARDS program and in cooperation with EDF and Handicap International), a situational analysis of persons
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

with disabilities in Macedonia was published, but - methodologically it was limited only to the key articles of the Convention (then under development). Some of the authors of that analysis (including the late Miodrag Ignjatovic, Editor-in-chief) are also the authors of parts of this paper. The time and conditions have matured and a need arose of preparing a comprehensive report, not only in terms of the Convention, but also with regard to the other segments of social life. The Delegation of the European Commission to Macedonia was fully understanding of this need and this report was supported as part of the Polio Plus In quest of the lost agenda project under the 2011 IPA program. The English version of this report was supported by the Australian Embassy in Belgrade. Still, the individual project activities would have been difficult to complete without the support the Polio Plus 2011 and 2012 annual programs received from the Civica program, supported by SDC and implemented by CIRa. Any division and classification of social phenomena such as disability, which has a multilayer location and hybrid rights intertwined in almost all political and socio-economic human rights, is necessarily at least questionable, if not even problematic. The number of opinions equals that of the experts, especially in such a complex and relatively new mater. This is why we do not claim that this is a comprehensive report or that ours is the only methodological approach. Simply, this is the approach on which the authors agreed (see more in the section on methodology). Any suggestions or alternative approaches are welcome. By default, each analytical article is worth as much as its authors, data and references are. Within the timeframe, resources and respondents available, as well as within the finances allocated, we attempted to increase the value of the report in this aspect. Here I would like to thank the great number of authors (mentioned in the previous section) who - without any fee whatsoever - provided their expert contribution to the contents of this publication. Finally, I must thank my colleagues and members of the Polio Plus who, although not among the authors, helped make this report a reality with their contributions. Zvonko Shavreski

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Executive Summary
I did not have time to write you a short...
Paskal Blejs

The beginning of this report gives an explanation of the approach to the develo pment (methodology), position (interest, motive of the reporter), context (environment and existing determinants of the time and space we live in), and the actors (institutions existing or found themselves in the period and space of this review). Methodologically, this report is a combination of primary and secondary sources and has been complemented by examples aimed at promoting the exchange of experiences and learning, in the hope of initiating action. Emphasis is placed on the illustration of bottlenecks or alarming situations that may be eliminated and overcome by individual measures, without waiting for the introduction of a comprehensive system. Disability is defined as an issue of interest of the actors. Persons with disabilities, as both active and passive entities, have their own interest in having disability perceived from the aspect of human rights, in line with the motto Nothing concerning us without us! This chapter includes a section defining the general context, the background of the developments and the stage and stage design of the main protagonist disability in Macedonia. The illustrations are short and presented through the prism of figures. The goal of this section is to serve as a parameter in the comparison with the situation in the specific areas, shown in the text below. At the end of the first chapter, there is a section defining the actors. The dynamics of any stage, playground or battlefield depends on the deployment of the playe rs, their role and their capacity. This is why they are so important in any basic analysis. We placed a special emphasis on the institutions in this section, while the other actors are given more space in the second and third chapter.
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The second part focuses on the definition and terminology, legislation and the UN Convention, civil society organizations of persons with disabilities and their financing. There is no widely accepted definition of disability, but there are defined provisions and there are standards. The numerous contemporary regulations in advanced states do not pretend to establish a definition of disability; instead, they provide guidelines. It is similar in Macedonia. It is also similar in the CRPD. The terminology is a true variety and mostly defines the position of the actor using the term. This is why we closely link the naming of disability here with the stage, actors and their interest, but also with the issues of stereotypes and unpreparedness. This is exactly why a single terminology will be difficult to arrive at in the future, as well. The statistics and data that may be derived and used in the statistical operations and planning of actions are of priceless importance. The 2011 census of population in Macedonia, however, was never completed. This is why we still use the WHO estimate that the number of persons with disabilities in developing countries is approximately 10% of the total population. Further in the text, a review is given of the legislation, with a focus on the CRPD, but also on the work of the organizations of people with disabilities (and those taking care of them), as well as on the financing (money spent on this issue). While having even too many regulations in this area (there is even a special Law on Organizations, Employing People with Disabilities), the state is still applying dualism and due to its unequal financing approach (everything for some and nothing for others) even enhances the antagonism in the civil society sector. The need of fair regulation in this area is more than alarming. Chapter three elaborates the more present and important areas in the everyday life of persons with disabilities. In line with our views and for the purpose of ensuring consistence with the basic philosophy of this document, the issues of education and employment are placed at the beginning of this chapter. The basis reason for this is the fact that education is the only thing that may overcome disabilities and that profitable economic activity or employment is possible with appropriate and high-quality education only. The recommendations are complex and call for abandoning the system of segregated education and, consequently, segregated employment and position of people with disabilities on the open labour market. While the entire report insists that disabilities must not be perceived as a medical issue and dealt with as such, the health and health insurance aspects are of high significance for persons with disabilities. The first reason for this is the fact that disabilities arise as a result of accidents and health disorders that while being treated lead to temporary and often to permanent disability. The second reason is that disabilities, in most of the cases, do not diminish: on the contrary, they worsen as time goes by and are accompanied with side-products. This is why persons with disabilities have a need of more frequent and higher-level medical care. Thence the measures for enhanced prevention and early detection, but also for an individualized approach and special reallocation of services in the secon
Disability - the missing puzzle piece

dary and tertiary healthcare when it comes to a specific health issue of a person with disabilities. Due to the lack of effective participation in the first two areas (education and employment) and the too large a need of the third one (health), persons with disabilities, instead of being temporary users of social assistance measures, most of the time turn into permanent ones. This is where the vicious circle of exclusion and marginalization in the social life ends. The system of social protection of persons with disabilities is lacking a basic philosophy and an inclusive approach, as many of the measures of protection in essence result in effects contrary to the intention of the legislator (an example of this is the social aid for mobility, which is not linked to an obligation of mobility and undermines the measures of employing people with disabilities). The further text unveils some of the areas and affirmative measures of the organized community, i.e. the state, which may minimize or break this vicious circle. There is an alarming need of putting a stop to the practice of segregating the persons with disabilities into institutions and emptying and closing such institutions. The process of deinstitutionalization has begun, but its completion is not so certain as it is urgent because of the inhumane treatment in the institutions, the arbitrary procedure of referral to an institution, and the collision with the legal procedure for depriving someone of their working capacity. What comes very close to this issue is the complementariness of the right to a family life, the right to a family and parenthood, as well as the support of the natural families of persons with disabilities, as a prevention of the subsequent unnecessary adoption and counterproductive institutionalization. The state is introducing the legal framework, but is unable to follow each case individually. This is why the areas such as access to justice and judiciary, provisions and mechanisms for protection against discrimination, and activities to ensure accessibility and availability of institutions, products and service for persons with disabilities as well are of great importance in the introduction of a self-complementing, self-feeding, and self-learning system. Towards the end, the text includes areas that are oftentimes neglected, but essential for the ability of any human being to realize themselves as social beings. Persons with disabilities are no different than anyone else. They are not persons with special needs; all they differ in is the way of realizing the same general human needs. This is why we turn in this chapter to the inclusion of persons with disabilities in the cultural life, sports and physical relaxation, entertainment and religion. According to Murphy, anything that can go wrong will go wrong. This was taken as the motto of the section on multiple discrimination with a focus on the women and children with disabilities, but also in the light of multiple disabilities (physical and sensory, for instance). Political participation appears to be an issue of access to justice. In essence, however, it is a multi-segment issue encompassing the fundamental stereotypes and hopelessness and defeatism of the voting category of persons, families and supporters who fail to recognize the strength conferred to them by the right to vote.
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What is of great importance for the promotion of the inclusion of persons with disabilities in the community is the process of improving the availability and accessibility of the existing products and services for persons with disabilities by adapting and standardizing the existing, as well as by introducing new forms and standards under the principle of universal design. This section includes a special focus on the treatment of the working capacity of persons with disabilities. This mainly refers to persons with intellectual impediments, but often (in line with the saying the good is destroyed together with the bad) includes other categories of disabilities as well. In this area, the government measures are, to say the least, confusing (if not even discriminatory). Be it as it may, the practice of being deprived of ones working ability is a reality faced by persons with disabilities in Macedonia and is as such sanctioned in the international law (ratified in our country) by more than one convention. The monitoring mechanisms of Article 33 of the CRPD is a multi-layer one, including several entities and being somewhat vague, at least for us. This is why we have devoted more attention to this issue. Macedonia will have to introduce such a three-layer mechanism expert, coordinative, and independent - to monitor the implementation of the Convention. In addition (in accordance with paragraph 3), the mechanism should also involve the organizations of persons with disabilities. A true challenge, indeed. The media and the public are faced with much more segments of social life than just the phenomenon of disabilities. Yet, our story treats them separately, but within the same group. The media such as they presently are in Macedonia have a need of sensation, negative promotion, and cheap production (mostly reproduction). This economic trend creates a mental structure among the viewe rs and serious psycho-dependence on information about relevant topics. And what can be less relevant than the issue of persons with disabilities at a time when the entire nation is mourning the fact that Ali Riza is dying for the second time? To be fair, the public awareness is at a much higher level than ten years ago. Many known and unknown heroes in the transition worked hard to this goal and much money, energy and time were spent on this. And it gave results. This is all very well. But, it is not good if we stay satisfied with that only. Human rights are no private property; they are common heritage. The situation is not given once and for all, nor is it guaranteed forever. Nothing comes for free!! The benefits must be constantly defended and this must be done in the hardest way on a daily basis, at all places and times and by all of us, regardless of how much the others think that we dare or how much we re-examine ourselves whether we have the right to dare. The final section of the text presents the grouped recommendations resulting from each of the issues elaborated.

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Disability - the missing puzzle piece

1
BASIC CONSIDERATIONS
The golden rule when you want something to say is to introduce yourself. But when you want to say something on so complex and multidimensional subject as the phenomenon of disability, it is not enough to state your name; you should also provide a reply to the usual journalistic inquiries: Who are you? What are you? Where are you from? Who are you with? And most importantly, What do you stand for? i.e., What do you represent and what do you want to do?? Or, simply put: What good is all this? This section presents the basic parameters that determine the portrayed image of the phenomenon of disability. In simple terms, from the very beginning we wanted to clearly present the approach towards the development (methodology), position (interest, motive of the one who presents), context (environment and existing determinants of the time and space in which we live), and finally the actors (institutions that exist or are found in this region at the time of this review). The beginning includes the part that explains what means we used to obtain and how we made a summary of the information and conclusions. The combination of primary and secondary sources is supplemented by examples that should promote exchange of experiences and learning in the hope of initiating action. Emphasis is placed on the display of bottlenecks or alarming situations that do not have to wait for establishment of a system to put out local fires. From the beginning of time, everything has been a matter of interest. People with disabilities also have their own interest, especially when it comes to the phenomenon of disabilities. We believe that the position of the authors is the most important part that should be shown before entering into specific areas. And here we have a clear standing point - disability is a human rights issue. Nothing else!
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But no less important is the position that people with disabilities should speak up their mind. In accordance with the motto: Nothing about us - without us. Nothing exists in isolation; everything is determined by the things surrounding it. This is exactly why this chapter contains the part that determines the overall context, the background of events and the stage and the set design of the main character - disabilities in Macedonia. The stories are short and presented through the prism of figures. We did not want to spend this report and these precious pages in presenting facts that are mainly notorious and easily accessible from various sources. The purpose of this section is to serve as a parameter in comparison with the situation in specific areas, shown in the following section. The section that defines the actors is at the end of the first chapter. The dynamics of any stage, playground or battlefield depends on the deployment of the players, their role and their capacity. This is why they are so important in any basic analysis. In this section, we place special emphasis on the institutions (state and parastate i.e. those with public authority). Still, other actors are by no means forgotten. Quite contrary - most of the second and third chapters are devoted to them.

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1.1. Methodology
The book to read is not the one which thinks for you, but the one which makes you think. Harper Li

Conceptual approach: Most probably, the biggest reason behind the existence of the present Rashomon effect of norms, measures, bodies and institutions that care for people with disabilities is the lack of basic philosophy and purposeful approach. Decisions and action do not stem from one basic, established concept and are often scattered, not connected, and as a rule reflected in ad-hoc measures and the so-called fire extinguishing actions. This is supposed to be fixed by the Convention on the Rights of Persons with Disabilities, i.e. by consistent implementation of its policy and principles and subsequently the proposed normative framework. But we are aware that the inextricable chain required for successful resolution of normative phenomenon of disability is contained in the formula: R = (s + p + s+ p) + I (Where: The resolution (R) depends on (s) - the situation perceived, (p) - policy aligned, (s) - strategy adopted and (p) - a real action plan. Implementation (I), as the most important result, except in terms of recommendations for action is, however, beyond this report.) This doubtless formula makes the preparation of this report an unbiased, multisegmental, and scientifically-based understanding of the conditions which must precede any good policy and strategy that want to hope for a decent implementation. Conceptually, we use the old Hegelian formula of thesis (presentation of the legal framework and policies), antithesis (the situation, i.e. implementation), and synthesis (guidelines and obligations arising out of the Convention to draft recommendations for action). The time frame covers the last 15 years, i.e. following the adoption of the Law on Civil Society Associations and Foundations in 1997, while content-wise we include the events, actors and products in this period. Methodological approach: The approach to the preparation of this report is comprehensive and represents a mixture of different research methods. In preparing this National Report on the Situation of People with Disabilities, we used the CIVICUS methodology, which was adapted for the purpose of this
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report, and certainly the experience of the team that prepared the Macedonian Index of Civil Society in Macedonia report in 2005 and 2010 and the 2007 National Report on the Situation of People with Disabilities in Macedonia. In order to make a valid and complete assessment of the situation of people with disabilities in Macedonia, it was necessary to collect accurate data and information and to embrace the diversity of the organizations of people with disabilities as, for example, rural and urban or multi-sector and umbrella organizations of people with disabilities. Also, in the preparation of this report we used all possible sources of information, so as to avoid overlapping with other research and wasting the already scarce resources. Finally, the methodology was designed to promote learning and, if possible, activities of the participants. The approach was based on group work and individual considerations that helped participants see themselves as part of the big picture, think about their own organizational context, strategically reflect on the relations within the organization and in the other segments of society, as well as assess the collective needs. The following methods were used in the development of this report: Primary considerations: Regional counseling: together with the Ludwig Boltzmann Institute, 8 regional counselings were organized and organizations of people with disabilities, media, and representatives of local government were invited to take part. Focus groups: information from 3 focus groups of people with disabilities was used as the primary source of the status and their personal experiences. Personal experiences (stories) and statements of people with disabilities or the actors in the respective area. Secondary sources: Studies and research: The project team began by reviewing the information provided in the existing studies, surveys and research and in relevant activities and observations and linked them in a user-friendly report. Legal Framework: Analysis of policies, strategies, laws and regulations. Media analysis: over a period of one year, the printed media and national television and electronic media were followed in terms of how and how much they inform about people with disabilities. Case study: To provide a clearer picture of some of the indicators, concrete examples of people with disabilities or activities of organizations of people with disabilities are used. Examples from the practice: positive examples placed in a frame as cases and negative ones used as a paradox are given to serve as an idea or a guide to quick resolution of the alarming situations or the so-called bottlenecks, guided by the idea that we should not wait for a system to be constructed in order to solve a small but bitter problem.

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1.2. Position
People have always been and will be naive creatures of deceit and self-deceit until they realize that it is the interests of this or that individual, this or that group that stand behind every religious, ideological, political, or professional statement, opinion or phrase Vladimir I. Lenin

Paraphrased, the above thought means that people would never be able to understand the definitions and presentation of things until they realize that the position of the group to which the author belongs lies behind the approach and presentation. Therefore, to avoid confusion, here we want to clearly emphasize the position and interest of the authors and publisher of this report. Donors on the other hand, as noted, do not always share the opinion of the authors and express their reserves to the contents of this publication. But before we go into it, we need to determine the views on disability throughout human history. Basically, there are three major groups, i.e. views of those groups. TRADITIONAL MODEL This is a mixture of different sorts of approaches, requests and understanding of disability that followed human civilization from the earliest times to the late middle ages (and in some places even to later times - until the present). In the eyes of this group, disability is a burden that is imposed on the community through one of its members. The reasons are varied and mainly hard to understand, while the solution is commonly seen in rejection or isolation of the member who has the problem. Religion, as a view of the world, has its attitude towards disability. The range varies from the understanding that disability is a divine punishment for some past sins (demonology), to the view that it is a temptation of human kindness (Martin Luther). Polytheism, though older, went even further and created gods with disabilities, as a reflection of earthly life (the example of the favorite, disabled god Hephaestus, or Vulcan, in the Greek and Roman mythology, respectively). Ideology, as a system of values and view of the world, does not exclude disability as an issue and its approach to it depends on the basic ideological principles. The extremes are different here as well - from the Roman Homo homini lupus est, where even the disabled is just another wolf, up to the advocates of the theory of natural right and return to nature.
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MEDICAL MODEL For people who hold this course, disability is an impaired health condition. This condition, consequently and understandably, prefers medical treatment above all, as disability is a disease and - according to this group - it can be treated like any disease. The defectology view develops the medical model that, for the first time, recognizes the educational component. Initiated by behaviorism and upgraded by the initial successes, this model and its supporters (mostly professi onals, humanitarian workers and perseverant parents) believe that disability can be overcome as a condition. The emphasis is thus placed on early prevention, technology in the service of medicine and special training and special education. SOCIAL MODEL The new civic movements of the early 60s are very conducive of and develop this view, which received its own independent form and strong supporters in the mid 70s. For them, even though disability in fact results from a certain health problem and is in an increased and constant need of medical assistance, it has never been, nor will it ever be a medical phenomenon. In their view, disability is simply a social issue. Their request is that the disabled be a part of the community and their primary motive is to establish a complete inclusive system. Advocates of this view put the emphasis of their work on providing a legal framework for a decent and equitable life for people with disabilities, hoping that favorable conditions for a rapid change in the mentality of the entire community will be created by forcing the legal framework. For them, disability is neither a punishment, nor a disease, but simply a state that they have to deal with. MODELS AND GROUPS - CHAIN OF RELATIONS This division and stratification of the term disability, in fact, has its basis in the existence of three (stratified and exfoliated) large human groups, whose everyday existence is connected with it (the disability). So, there are: 1. People living alongside disability; 2. People living with disability and 3. People living from disability. The first (largest) group is the group of people who look at disability standing aside, believing that it can not happen to them. They may even have a positive attitude towards resolving the issue, but perceive it in any case as something far from their everyday life. The second (smaller) group is the group of people with disability and their ly members who are confronted with the problems imposed by the special fami needs and the satisfaction of such needs on a daily basis. The third (smallest) group is the one that tries to detect, overcome or alleviate the cause of disability. (Special educators, doctors, lawyers, human rights sts). These people also encounter disability everyday and while for the first activi group disability is a life sentence, it is life for the second one and a life profession for the third.

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Disability - the missing puzzle piece

Graphic 1 The three major groups related to the disability

Very often, it happens that one group shifts into another - the first one can move into one of the other two. That is what life brings with it. Switching between the latter two groups is rare. It is usually a professional who (accidentally) becomes disabled, or a disabled who has (intentionally) gained expertise in human or social sciences. These fluctuations are useful and of great significance in understanding the problem. Anyway, disability is a real challenge, both for the person who has it and for their family and the overall community.

ESSENCE In its essence, disability (whatever the definition is) is a phenomenon of a physiological nature (physical or mental), which in turn results in inability to do things (in general or normal, everyday). Disability is thus a short circuit in the relation individual - community, i.e. a short circuit in the integral circuit, where the right of individuals to satisfy its special needs crosscut with the obligations of the community to enable this. With its own measures and positive action, the organized community (state) should act to reduce the gap (for some even the abyss) between the individual and society. There, that is our position! That is why the team that was selected to prepare this report is composed of members of all three groups with one single criterion - to look at disability in the light of human rights!
Graphic 2 Location of disability phenomenom

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1.3. Context
Those who cannot remember the past are condemned to repeat it.
George Santayana

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When analyzing any sphere of society, we can not exclude the environment. Everything that exists, we see and know is determined by something else. Nature exists in the interdependence of segments governed by natural laws. It is similar with the existence of the society. Disability as a social phenomenon can not be observed outside other social determinants. This is why, in an attempt to present the picture of the situation of people with disabilities in Macedonia, on the following few pages we will first look at some parameters that should portray Macedonia in the global situation of the space and time we live in. Basic information Macedonia joined the UN in April 1993 and is part of the large family of 192 countries that constitute the largest intergovernmental organization. With its 25,713 km2, it is the 148th country in the world in terms of its size; the situation is similar with the population (2002 Census) - with its 2,022,000 inhabitants (82 per km2), the country is on the 142nd position and, in this regard, it is among the smaller states. In terms of the other parameters that are important for determining the state of one country, in this case Macedonia, its ranking significantly exceeds its size and population. According to the assessment of the nominal GDP (Gross domestic product), Macedonia has 10,113 billion dollars that translates into 4,911 dollars per capita and - according to IMFs estimation - it ranks as the 93rd country in the world. Macedonia has been assigned a high HDI (Human Development Index - comparative data on life expectancy, education and living standard) of 0.728 and stands at the 78th position in the world. EU integrations The process of integration of Macedonia in the European Union began with the gaining of independence in 1991 and was formalized in 2001 by signing the Stabilization and Association Agreement with the European Union (entered into force on 1 April 2004). In December 2005, Macedonia was granted a candidate status and ever since the European Commission has been publishing annual progress reports on the country, with emphasis on the reforms that should be completed. Since 2009, the European Commission recommended on three occasions that the negotiations for Macedonias integration into the European Union start.
Disability - the missing puzzle piece

Diagram no.3: Gross Domestic Product Trends

Due to the name dispute with Greece, however, as well as to the need of unanimous vote of EU Member States for accession of new members, Macedonia is still unable to pass this barrier. But, regardless of impasse situation with this dispute, the EU integration process is ongoing, especially in the field of harmonization of the legal framework in the economic and social spheres. The social dimension of the EU integration and the harmonization of the anti-discrimination legislation are especially important for the people with disabilities in Macedonia. Economic Development Following the 2001 crisis, Macedonia managed to maintain macroeconomic stability with low inflation and a fiscal balance. Prior to the global economic crisis, the Macedonian economy had solid growth, with the GDP growth ranging between 5% and 6%. Macedonia was spared from the first wave of the global economic crisis in 2008, but not from the second one (the so-called debt crisis): in 2009, for the first time since 2001, the Macedonian economy entered into a recession. According to the March 2011 report of the State Statistical Office, the gross domestic product growth in the last three quarters of 2010 was 2.3%. But the recent re-balance of the budget (only three months after its adoption) is not announcing bright days for the social sphere in 2012. Social picture Macedonia holds an infamous leading position in Europe when it comes to unemployment. The labor force in Macedonia is 65% of its population and the total number of unemployed (persons over 15 years) in 2010 was almost 300,000. Until 2005, the number of unemployed steadily increased and reached a PARADOX rate of 37.3%. Since 2006, with Believe or not, in the global picture Ma great efforts and active employcedonia is just for one at the top 10 counment measures this increase has tries in the world. According the CIA data been retained and even reduced to Macedonia is on the 6th place of military 30.9% in 2011. The most alarming expenditure with its gross domestic percentage of unemployed is that
product Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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of young people (between 15 and 24) which, although reduced in recent years, is still above 50%. The level of education of the population in Macedonia is also lagging behind the European standards. Over 18% of persons older than 15 have no education or have incomplete primary education. 35% have primary and lower (two to three years of craft school) secondary education. 37% have regular (4 - year) seconda ry education, 3% are college graduates, 6.5% have a university degree and only insignificant 0.3% have completed their postgraduate studies. The recent reforms in education (compulsory secondary education), actions for computerization and dispersed studies promise serious advancements of these percentages, but - as in any systematic endeavor - results take time. Macedonia is also characterized by high levels of poverty and social exclusion. According to the State Statistical Office, the percentage of poverty is 30.9%, which means that almost every third person in Macedonia is poor. The percenta ge of poverty among the unemployed is 44.8%. The percentage of poor heads of families without adequate education is above 59%. In essence, these figures show that the solution to one problem lies in solving another one. Whether we want to admit it or not, the solutions to problems that people with disability in Macedonia are faced with are determined by the above situation and will have to follow the dynamics of those issues. Linked: statistics, education, employment

1.4. Institutions
The only thing that saves us from the bureaucracy is its inefficiency
Eugen Mekarti

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Macedonia, as a country born in socialist etatism and with centralized economy, is heavily institutionalized. Recent reforms and decentralization have created more institutions, government bodies and agencies and their counterparts at the local level. The Ohrid agreement savors this with a system of complex rules and relations of the so-called consensual democracy. Apart from being expensive, this system is also often ineffective. When we mapped the institutions that are responsible (or care) for people with disabilities, the institution-gram turned out to be very simple. In the middle, there is the Ministry of Labor and Social Policy (MLSP) with its organs and agencies and other various organs and their bodies with small and undefined coordination are scattered around. MLSP is divided into 10 sectors: labor; pension and disability insurance; equal opportunities; social protection; inspection; protection of children; European integration; legal and normative affairs; budget; finance and accounting; and coordination and technical assistance to the minister.
Disability - the missing puzzle piece

Several units operate within the MLSP. The Equal Opportunity Unit includes the Unit for People with Disabilities (one employee) as a focal point. The majority of the issues that concern people with disabilities are part of the work of other sectors. Besides the units within the ministry, the Administration of issues of veterans and war invalids and the State Labor Inspectorate also form a part of this ministry. 30 centers for social work are included in the Social Welfare Sector. In addition to supervising these bodies, the MLSP is also responsible for, i.e. supervises the work of the Employment Agency of the Republic of Macedonia, the Pension and Disability Insurance Fund and the Agency for Supervision of Capital Funded Pension Insurance companies. 10 facilities (homes, institutions) for accommodation of and care for different categories of vulnerable persons operate under the MLSP. Among them, those relevant to people with disabilities are the Special Institution in Demir Kapija and the Banja Bansko Institution. The Ministry is also responsible for the operation of the network of day care centers for people with disabilities. Some of them are coordinated directly by the Ministry and some by means of funding the activities of civic organizations that run these day centers. The next institution of importance for the disabled (with much less competencies than MLSP) is the Ministry of Education and Science (MES). People with disabilities are included in the educational process in different ways, starting with integrated education, special classes and educational programs, engagement of defectologists in the teaching, and ending with special and boarding schools. The Bureau for Development of Education develops special programs and monitors the work of these institutions. The State Education Inspectorate has in its structure a unit for inspection and quality assessment of primary and secondary specialized educational and pedagogical institutions. Although people with disabilities are traditionally considered ill and disability an illness in accordance with the medical model, the Ministry for Health has no special competencies with regard to people with disabilities, except when they are treated as patients. The Ministry of Health is responsible for the work of the committees for evaluation of the degree and type of disability. PARADO X The Ministry for Transport and SPECIAL FUND Communications is responsible for The excessive institutionalization and state regu enforcement of the Law on Conlations are issues often mentioned in the country. struction and the Law on Spatial Interestingly enough, even despite this, the SpePlanning, which are of particular cial Fund for Employment of People with Disability - which is automatically funded each year importance for the right to access with more than 3.000.000 euros - does not have its and mobility of people with disown Board?! abilities.
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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Macedonia has set up a National Coordination Body for the people with disabilities whose members include representatives of a dozen ministries, as well as representatives of organizations of people with disabilities. According to the president of this body (who is a person with disability himself), its role of a coordinator of the ministries and institutions on issues concerning people with disabilities still has to be won. The Association of Protective Companies (association of private companies that employ people with disabilities under the Law for Employment of People with Disability) has significant responsibilities in the recruitment of the disabled and in the monitoring and use of funds from the Special Fund for Employing People with Disability. The public powers of the body often cause discussions about the privileged and monopoly position of the companies it represents. The Ombudsman is mandated with the protection of the rights of the citizens of Macedonia - and thereby people with disability - against violations of their rights by the state authorities. Recently, a unit with a Deputy Ombudsman for People with Disabilities began operating under this institution. It is still early to evaluate the work of this institution, but what is important is that this body may act as part of the monitoring mechanism pursuant to Article 33 of the Convention on the Rights of Persons with Disabilities. Recently, the Committee for Protection against Discrimination was set up in the country; in its work during the first mandate, the committee gave priority to the rights of people with disabilities, but due to the brief period of activity, its role in advancing the rights of people with disabilities remains to be proven. At local level, there are Committees for Equal Opportunities in the municipalities, which were given a mandate broader than just gender issues last year. There is no information as to how they are coping with the expanded mandate and whether this is beneficial for people with disabilities. UNDP and OSCE, as interstate organizations, have permanent missions in Mace donia and undertake activities within their programs that concern people with disability. Through the PROGRESS, EIDHR and IPA programs, the Delegation of the European Commission provides support for activities (governmental and nongovernmental) aimed at inclusion of people with disability and regularly monitors the situation of people with disability in their annual progress reports on Mace donias EU integration. Conclusion: There is an evident need of establishing coordination between the institutions, conducting consultations with civil society organizations, and increasing the capacities of both.

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Disability - the missing puzzle piece

2
GENERAL ISSUES
General questions require general answer No way! This is the most common mistake when creating a speech or doctoral dissertation. It is important to respond to general questions specifically and as clearly as possible and to place them in the context of the position and methodology of the author / authors, in order to simplify specific areas and issues and to highlight the recommendations for action. This is exactly why our focus in this section will be on the shortcomings that are not necessarily harmful, as well as on the surplus issues, i.e. one that do not necessarily complement something. The first three reviews in this chapter include articles about topics that are clear to everyone, but when we discuss about them, we seem to be floating through terra incognita. Doctors will say that a correct diagnosis is half the cure. By analogy, if the diagnosis in medicine corresponds with the definitions of social phenomena, then we are missing half the cure for the undefined phenomenon of disability. We agree, but this is not medicine. There is no accepted definition of disability, but there are defined provisions, there are standards. Many modern regulations in the developed countries do not tend to establish a definition of disability; instead, they only provide benchmarks for it. It is similar in this country. It is the same in the UN Convention. Terminology seems to be the tail of the definition. Or is it perhaps the ancient egg or chicken dilemma? But lets not forget that the terminology (or designation) usually defines the position of the actor who uses the term. Therefore, the designation of the disability in this review is closely associated with the stage, the actors and their interests, but also with the issues of stereotyping and unpreparedness. The one that is not counted - does not exist.
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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Statistics and data that can be segregated and used during statistical operations and action planning are of great importance. We do not have them. Yet, it is not as if we had nothing. Although the 2011 census in the Republic of Macedonia was not implemented, it included a box for people with disabilities for the very first time; lets not lose hope - one day, it will happen. What is more important is that we have comparative data that may serve for preliminary action. The second part of this chapter, unlike the previous one, includes areas that contain more provisions, definitions and percentages, but - due to the level of intere st, personal goals and daily politics are usually not clear, in mutual collision, and in a financially problematic constellation. Special emphasis is given to legislation focusing on the UN Convention on the Rights of Persons with disabilities, as well as to the functioning of civil society organizations of people with disabilities (and those who care for them) and to financing (money spent in this area). To make it even clearer, some of these areas probably belong to chapter four, but having in mind the positioning, interest and actors, we place them here as they illuminate the impact on specific areas.

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Disability - the missing puzzle piece

2.1. Definition
Disability is like pornography: difficult to define, but easy to recognize
Zvonko Shavreski

Neither the constitution nor the Law on Social Protection or any other regulation set a single definition for the term people with disability. Article 2 of the Law on Employment of People with Disability provides that under this law, a invalid person is a person with impaired vision, hearing, voice, speech, language, a physically disabled person, a person with intellectual development impediments, and a person with multiple disabilities who, due to the degree of invalidity, has specific needs at the working place. The rulebook for assessing the specific needs of people with impediments in their physical or mental development postulates the following: 1. People with visual impairenments CONVENTION are those with low vision or blind or people whose vision is reduced The Convention does not explicitly define the to the extent of medical standards word disability. The Convention Preamble listed in the Rulebook. According states that disability is an evolving and dyto the Rulebook, a practically blind namic concept, which is subjected to tempoperson shall be a person with such a rary adjustments over time, despite the varireduced functional ability of the orous socio-economic developments. gan of sight that prevents education The Convention itself states that disabilit y largely through visual means. should be seen as the result of interaction 2. Persons with impaired hearing, between the person and the environment in depending on the degree of impairwhich the person lives, and that it is not something that occurs in the life of the individual as ment, are divided into deaf and hard a result of any disorder. of hearing persons, according to the The Convention does not give a definition for medical standards outlined in the the term person with disability. But it sugRulebook. gests that the term includes people who have 3. People with impairments in long-term physical, mental or intellectual speech and voice are those whose disa bility or sensory disabilities, who face speech does not correspond to their negative attitudes or physical obstacles and age or it is not intelligible, gramcan not fully participate in society. matically and syntactically conBaseline rewiev of the situation of people with disabilities in Macedonia (2012)

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structed, with convulsive disturbances in the mechanism and the automaSYSTEM LAW tism of speech and that require special treatment. On such basis, the According to the definition in the Bill on the Rulebook divides these individuals Rights and Dignity of People with Disabiliinto groups, according to certain ties, the term disability means an impaired medical standards. relationship (communication) between the 4. Physical invalidity, according to people with disability and society. the Rulebook, is a condition of decreased or lost functional ability DPI in one or more organs of the body, which significantly reduces a perAs defined by the International Organization sons ability to satisfy the basic of People with Disability (Disability People living needs. International - DPI), disability is a result of 5. Mental disability, according to the the interaction between the people with disRulebook, is a condition of slower ability and the environment with negative ator incomplete mental development, titudes and physical barriers which is characterized by distortion of those abilities that appear during the development period and contribute to the general level of intelligence, such as cognitive, speech, motor and social weaknesses. According to this Rulebook, persons with specific needs include the chronically ill individuals and individuals with autism. From the above mentioned, it can be concluded that this Rulebook mainly gives medical definitions of disability, with elements of social dimension, but they are far from the view that the issue of disability is a human rights issue. Other, mainly secondary legislation acts, also have similar and very incomplete different definitions of disability, differing in accordance with their needs. Some of them are funny and some are so offensive that we decided not to include them even as bad examples. Worldwide, the attempts to define disability are descriptive and often follow the Convention. The laws of Australia and the Philippines are the most advanced ones in terms of attempting to define disability and people with disability. Conclusion: There is no established unique social definition of the term person with disability in Macedonia. This is not such a serious problem, but efforts should be made to unify the term and abandon the traditional designation, which is burdened with stereotypes from the past. Proposed measures: Enhanced actions are needed in the Republic of Macedonia for disability to be understood and treated as a social category and as a human rights issue in all domains (legislation, education, media, public awareness etc..).

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Disability - the missing puzzle piece

2.2. Terminology
Call me a pitcher if you want - do not break me!

Proverb

In the theory and practice of the Republic of Macedonia, there is no single accepted term for people with disability. In its Article 35, paragraph 3, the Constitution of Macedonia states that: The Republic of Macedonia provides particular protection for invalid people and conditions for their inclusion in social life. The Law on Social Protection uses the terms people with physical impairenments and person with intellectual development impediments. There is a Law for Employment of Invalids people in Macedonia in which, as in the title itself, the term invalid people is used. There is a Law on Pension and Disability Insurance, which uses the terms invalid people, invalid pension and invalid insurance. The 2005 Law on Labor Relations states that employers shall not put the applicant (hereinafter: candidate for employment) or employee in an unequal position on the basis of race, color, sex, age, health condition or invalidity... (Article 6 paragraph 1). Article 177, entitled Protection for People with invalidity and subtitled Employment, Training or Re-training of People with invalidity states that employers shall provide protection for people with invalidity concerning employment, training or re-training in accordance with Law. Article 178 entitled Labor Rights of invalids poeple reads: to the worker person with invalidity with residual or altered working ability ... the employer is obliged to provide... . Article 169 of the same Law talks about part-time employment for parent of a child with developmental invalidity and special educational needs. The Rulebook for assessing the specific needs of people with impediments in their physical or psychological development states that people with impediments in their physical and mental development who have special needs are: People with visual impairments (poor vision and blind), persons with impairments in voice, speech and language; Physically invalid persons, Mentally retarded persons (light, moderate, severe and deep retardation), autistic persons, chronically ill persons, persons with various impairments (persons with multiple development impediments). The Law on Construction provides that constructions for public and business purposes shall be designed and constructed so that people with invalidity shall be provided with access and ease of movement, stay and work in the construction. (Article 11 Paragraph 1). The Law on Urban Planning postulates that barriers are created, building obstacles in cities and other settlements, which hinder the free movement of people with invalidity.
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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In 2001, the Government of the Republic of Macedonia adopted the National Strategy for Equal Rights of People with Disabilities in Macedonia. The text of this strategy makes use of terms such as people with invalidity, children with special needs, invalid youth, and people with physical, intellectual, STATEMENT psychological or sensitive impairments. In 2003, the Parliament of MacedoThe almost complete dominance of the medinia adopted the Declaration for Procal (biological, clinical) model of disability in tection and Promotion of the Rights the domestic research practice related to the of People with Special Needs, which problem of disability is a very serious obstatalks about people with special cle for institutional reform in the education needs, specific needs of people and social protection and deserves to be the with disability and people with subject of a detailed critical review disability. The impression that the terms are only names In the practice, there is also no unifor objective things, which are independent fied term, with the following terms from the researcher, is dominant; thus, sysbeing commonly used: invalids, intems of classification are created. valid people, disabled, handicapped, Translating the mental constructs of the aupeople with impediments in their inthor into a physical entity status corresponds tellectual development, people with to the general sociopolitical and ideological special needs and to a lesser extent societal frames within which he or she acts. - people with impediments or people The entire process is often hidden behind with specific needs. increasingly complex methodological proceWhat is often used in the case of dures that create an illusion of scientific obchildren is the term children with jectivity. Various post-paradigmatic thoughts development impediments or chilin social and human sciences rightly point to dren with special needs or children the role that language / discourse has in the with special educational needs, realization of reality. when there is a need to emphasize This article starts from the assumption that the educational segment of their dehegemony, oppression and power relations velopment. are woven into compelling narrative forms The traditional disability organithrough which scientists (unconsciously) zations (with the exception of the legitimize the status hierarchy and material Center for Support of People with differences, which is particularly expressed Intellectual Disabilities Message), as a kind of humanistic diversity that is comthe National Council of People with monly associated with the attribute disability. Disability, and the Coordination The way out must be sought in calling for Body for Equal Opportunities for top-down reforms de-medication of the t People with Invalidity have accep existing concept of disability and the approed the term invalids people. priate terminology apparatus with bottomA great share of scholars prefers the up reforms, i.e. fundamental changes in soterm people with invalidity. ciety itself by political action Newly established organizations targeting people with disability prefer Misha J. Ljubenovik the term people with handicap.
Disability - the missing puzzle piece

The media, in addition to the terms people with invalidity or invalid people or people with handicap, often use the term people with special needs. There is no generally accepted term for people with invalidity in Macedonia. The term people with disabilities prevails, but the terms people with handicap, people with special needs and people with intellectual disabilities are also still used. conclusion There is no generally accepted term for people with disabilities in Macedonia. The term people with invalidity prevails, but the terms people with handicap, people with special needs and people with intellectual disabilities are also used.

CONVENTION
The English version of the Convention uses the term persons with disability. There is an argument that there may be multiple variants in the Mace donian translation as inability or disability but the fact is that it can never be translated as invalid people (invalid = worthless), especially because of the offensive, pejorative and negative meaning of the term. But this argument was apparently not taken into account when the official Macedonian translation of the Convention was done

2.3. Statistics
A story without figures
The death of one man is a tragedy, the death of millions is a statistic
Josif V. Stalin

The public authorities and institutions responsible for the issues of people with disabilities do not have complete statistics regarding the number of people with disability and the type of their disabilities. They only have records of users of certain types of social services or welfare, but except the data on the amount of compensation, there is no mention of other data that can be used for further work. Despite the efforts of organizations of people with disability, the last census in Republic of Macedonia in 2002 contained no box with questions related to disability and the opportunity to collect such statistical indicators was thus missed. Fortunately, nine years later, after continuous lobbying and cooperation with the State Statistical Office, the issue of disability was introduced in the census lists and the census officers were trained how to ask questions and record answers. And things started. Unfortunately, after several days, the implementation of the census was interrupted for formal and political reasons and people with disabilities, their organizations and those working in this field lost this valuable source of information about the number, distribution, structure, education and affinities of persons with
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disability and the opportunity to design CONVENTION an appropriate action in this field. There are no announcements for continuation States signatories are obliged to collect of the census. Faced with this situation, appropriate information, including stawe are left with nothing else to do but tistical data and research, so as to be able to use the existing data and conduct a to formulate and implement appropriate comparative analysis of data from other policies aimed at implementation of the countries and worldwide. Convention (Article 31). According to the available statistical Further on, it states that the process of data (2007 census) on people with discollecting and storing such informaability who receive some sort of social tion should ensure respect for the right to privacy, dignity and the rights of aid (care by a third person or special aid), people with disability, partnership with there are 13,063 people in this category organizations of people with disability in the country, of whom 6,676 are chiland other factors, as well to ensure the dren and 6,387 adults. It should be notcomprehensiveness of the data required ed here, however, that those are people (Article 31). The States signatories shall with a 100% disability and people who undertake responsibility for the dissemihave succeeded in winning this benefit nation of these statistical data and shall through an administrative struggle. The provide access to such data for people others are invisible to the state. with disability and for others. DPOs have data on people with certain types of disability, but only for those who have joined the respective organization; as a result, we can conclude that these data are not complete, as they fail to include people who have not joined the organizations for various reasons. The biggest problem is that - due to the right to freedom of association - some people are members of several associations (e.g., the Association of the Blind and the Association of Civilians Victims of War and the Sports Federation), which makes the data completely unusable. The World Health Organization (WHO) recommends an estimate of 10% of the population of developing countries having some kind of disability. This estimate was confirmed in the case of Croatia, where the Census reported 9.7% people with disabilities. For underdeveloped countries, due to the low level of health care, the percentage goes above 15%.
CONCLUSION There are no complete statistics for people with disabilities in Macedonia. pROPOSED MEASURES

WHO ESTIMATION According to WHO (World Health Organization), there are supposed to be over 200,000 people with some kind of disability in Macedonia. If at least one parent or child and one brother or sister is added to this, we come to a figure of one third of the population that is directly affected by disability.

Macedonia should adopt legislation which would establish a system for collecting, processing and analyzing statistical data for people with disabilities, in accordance with the principles of the Convention.

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Disability - the missing puzzle piece

2.4. Legislation

The law is fortress on a hill that armies cannot take or floods wash away
Prophet Mohammed

In Article 1 of its Constitution, the Republic of Macedonia, in addition to being defined as a sovereign, independent and democratic State, is also defined as a social one. Article 35, paragraph 3 of the Constitution of of Macedonia States that the country is responsible for the social protection and social security of citizens, guara n tees the right to help of the weak and the ones not able to work, and provides special protection for people with disabilities and conditions for their full inclusion in the social life. According to Article 54 paragraph 3 of this constitutive document, No restriction of freedoms and rights shall discriminate on grounds of sex, race, colour, religion, national or social origin, and property or social position. These constitutional provisions practically mean an obligation of the State to ensure formal equality of people with disabilities with the other citizens through the social policy measures and overall normative legal action; therefore, in addition to taking care of their general needs, it should also take care of their specific needs arising out of their disability. After the Second World War, Macedonia established a system of protection for people with disabilities, which has the medical aproach on disability as it starting point and is strongly institutionalized. But it was the then current standpoint of science and it was the State that cared for people with disabilities, just like for everything else. After the independence of Macedonia, the process of transition led to impoverishment of the social sector, thus reducing the care and benefits enjoyed by people with disabilities. At the same time, the movement of people with disabilities and their advocates gained in strength at a global level and there was a shift from the previous medical model towards affirmation of the social model and viewing disability as a human rights issue. This resulted in Mace donia turning from a relatively advanced country with a complete system that provides care for all of its citizens, to a country that started to significantly lag behind, a country in which marginalization of the disabled is on the rise. Macedonia is a signatory to a number of international documents, legally or morally binding it to take concrete action in this area, such as the UN Charter, the Universal Declaration of Human Rights (1948), UN Resolution on Standa rd Rules on Equal Opportunities for People with Disabilities (1993, Resolution
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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PARADO X
RASHOMON EFFECT The real problem in the existing legislation is that it has been enacted for various specific interests and momentary official policies (from purely fiscal ones to ones out of solidarity and mercy) by different legislators (even by different countries - Yugoslavia, SRM), motivated by different objectives and principles, with an entirely different subject areas of protection and arrangement. The non-coexistence lies not only in the fuzzy definition of the phenomenon of disability and its designation, but also in the essential principles, the institutes involved and the objectives of the legi slation.

PARADOX
PIECE OF PAPER The Law on Employment of People with Disabilities postulates that all people with disabilities, if they want to be owners or managers, must appear in front of a medical board to have their managerial capabilities assessed (an obligation that does not exist in any law for any person or any function in the Republic of Macedonia). Just imagine - Stephen Hawking could not become a member of the Academy in Macedonia without such a piece of paper. Polio Plus submitted an initiative with the Constitutional Court of Macedonia and a complaint with the Commision for Protection against Discrimination. Both institutions exempted themselves on grounds of no competence. In un official statements, two members of these institutions said it was out rageous. P.S. The writer had to get such a document for himself.

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48/49), the European Convention on Human Rights (1950), and finally the Convention on the Rights of Persons with Disabilities (2006). Macedonia adopted its National Strategy for Equal Rights of People with Disabilities (2001, Official Gazette no.101/01), revised in 2010, and the Assembly of the Republic of Macedonias Declaration for Protection and Promotion of the Rights of People with Disabilities (July 23, 2003). These general commitments imposed a need to make them ope ra tional, as well. From a quantitative point of view, Mace donia does not seem to lack legislation that regulates the position of people with disabilities. The review Collection of Macedonian Regulations for People with Disabilities (edition Justiciana, 2005, ISBN 9989-2357-1-6) identifies 26 laws and numerous regulations that govern the respective area to a greater or to a lesser extent. The degree of involvement and scope of the applicable legislation vari e s from fragmentary mentions of people with disabilities (e.g. the Law on Customs O.G/ of RM 20/93) to the existence of a special Law on Employment of Invalid people (as a lex specialis to the Law on Labour Relations). The timeframe of these laws is relatively large (considering the circumstances in Macedonia) and covers laws adopted in the period from 1966 (e.g. Law on Determining Benefits in the Public Transportation of Passengers O.G of SRM no. 38/66, 18/77 and 10/79) until the latest changes to the Law for Social Protection and Law for Employment of invalid people (July 2011). Over time, this created a situation of extinction (actual inoperativeness) of some mechanisms and institutions (e.g. the committees for determining disability that the Government was unable to persuade to restart their operation despite its three
Disability - the missing puzzle piece

separate conclusions in 2005) and no new PARADOX ones were set up (despite the frequent declarative commitments). Another example INTER DISKRIMINATION is the LSP: even in its latest amendments, Another important element that is a individual monetary aid on the basis of dispure consequence of such non-sysability is still confused and mutually exclutemized and disharmonic legislation sive with the group income of the family in this area is the inter-discriminain which the person with disabilities lives. tion against people with disabilities, In assessing the situation, we must mention where the legislator groups people with the same kind of disability and the obligation of the state - when creating the same health problems only aclaws and determining the rights and obligacording to how and when they actions of citizens - to take care of the (in) quired their disability. equality of opportunities for enjoyment This is an example of how the cause, and exercise of such rights. Therefore, the instead of being a basis for the creamechanism that will allow for the develoption of a preventive role of the state, ment of modern legislation and monitoring becomes the basis for indirect discrimination. its implementation is the participation of the persons themselves, their families and the organizations working on disability issues. The motto Nothing about us without us is not merely a slogan, but an obligation and a protective mechanism that is not implicitly mentioned in the existing Macedonian law, and is applied only fragmentary and solely due to some officials with an advanced attitude. The state does make everyday efforts to perfect the legal corpus, but successes have been insignificant, and even contradictory. Examples of this are the latest amendments to Law for employment of invalid people (which distinguishes our country as a leader in the region in addressing this issue), whose intention to minimize the abuse of funds from the Special Fund for Employment of Disabled essentially opened just another one, even bigger door for the same manipulations. PARADOX To clarify the picture in this area, we should mention the survey aimed at identifying the A GOOD LAW situation of and opportunities for inclusion of people with disabilities in society, conYou can often hear that we have good laws but they are not applied. This is ducted by the Technical Committee of the a myth, to say the least. There is no Interparty Parliamentary Lobby Group for such thing as a good law. Protection of People with Disabilities in There is only a functional law that collaboration with 23 NGOs working in the draws its power from the general field of disability (conducted in the period legal framework and institutional cabetween June and September, 2005, over a pacity. Laws adopted in an urgent procedure n representative sample of 1,670 responde without any debate, without any imts). The results of the survey showed that plementing parties, without foreseen 69% of respondents think that, according costs, with no by-laws and deadlines to their place and status in society, people were probably not intended to be with disabilities are totally marginalized, good. and 57% of those asked whether people
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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Dijagram br. 4 Whether people with disabilities exercise their civil rights ?

with disabilities exercise their civil rights replied that they believe that the people with disabilities are not only unable to do so at all, but that they are even second-class citizens. And another excerpt from this analysis that may be the most important in this argument the part examining the satisfaction of the citizens with the existing legislation concerning people with disabilities -shows that only 4% believe that the state can actively protect the rights and dignity of people with disabilities with amendments to existing laws, while as much as 71% believe it is necessary to make them operational by enacting a special law for the rights and dignity of people with disabilities. This, therefore, imposes the need that the State undertakes a concrete positive action in this area and develops systematic legislation for people with disabilities as subjects of protection. The State should clearly and unequivocally define its policy that will gradually build a system of full equality of the position and opportunities of this category of citizens. UN CONVENTION Norm that requires system On 30 March 2007, Macedonia became one of the first countries to sign the Convention on the Rights of Persons with Disabilities. Unfortunately, it ended up as the last one in the region to ratify it (12/05/2011). Anyway, Macedonia did ratify the Convention and its Optional Protocol without any reserves; now, a period of their implementation is ahead. Once ratified, the Convention becomes an integral part of the domestic legislation and cannot be amended by adopting a new law. The initial report should be submitted in two years. Until recently, there were no guarantees for human rights at an international level, and even much less methods for judicial protection. The philosophy of the
Disability - the missing puzzle piece

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Diagram no. 5 How the State need to support people wiht disabilities

international law that prevailed in the 19th and early 20th century argued that international law applies only to the states. Accordingly, it was considered contradictory to have international legislative regulations that the individual can use in their defence against the state. This understanding was dealt away with after the end of the Second World War, when the Charter of International Military Tribunal of 8 August 1945 established the Nuremberg Tribunal, under which individuals instead of countries were judged on grounds of: crimes against peace, war crimes and crimes against humanity. The role of this Convention differs from all other international documents. It does not establish new rights or redefine the existing ones; its role is rather to provide measures that will enable people with disabilities to fully exercise the human rights guaranteed by international law. This is exactly why, on the occasion of adoption of the Convention in 2006, UN Secretary General Kofi Anan said This is a historic achievement for 650 million people with disabilities in the world who had no adequate protection up to this moment. The Convention is the basis and benchmark for the elaborations in this report, being evident all through the text and we will therefore not analyse it any further here.

STATEMENT
At the 6th session of the Ad hoc Committee, the official delegation of Macedonia was for the first time represented by two expert members. Taking active part in the work of the session, the representatives of Republic of Macedonia had two interventions: in terms of draft Article 17, related to education (current Article 24), and draft Article 24 regarding the participation of people with disabilities in the cultural life, recreation and leisure activities and sports (curre nt Article 30). At the 3rd session, representatives of the Association of Citizens Polio Plus-movement Against Disability participated with three representatives, but as part of the civic organizations, and not as part of the official delegations. Zaneta Poposka PhD Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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2.5. Civil Organizations


Invalids v.s. Civil
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has
Margaret Mead

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People with disabilities, as a marginalized group subjected to being stereotyped, naturally require grouping and association so as to defend against hostile environment or simply to share the hardship. But wishes and position do not converge naturally. Macedonian people (at least one part of them) won its statehood in 1944. Some of the Macedonian people (people with disabilities) gained its organized form Association of Blind People was established in 1946. The Association of the Deaf people was established later(1948) as well as everything else - under the patronage of the state which took care of everything that was different. In 1983, several associations and unions of people with disabilities created an umbrella organization, the Association of Invalid Organizations of Macedonia (AIOM). The conditions as they were in former Yugoslavia would be resolved with establishment of AIOM in terms of structure, membership, responsibilities and funding. Such hasty and ad hoc solution was for a long time status quo for the movement of people with disabilities in Macedonia. In 1997, after a long period of legislative vacuum, and with the actual existence of a new type of organization (i.e. non-governmental organizations - NGOs), the State adopted the Law on civil associations and foundations (LCAF) that opens (and narrows) a different space for civic organization and their influence in the community. The Law entered into force in 1998. In 1999, a group of parents of children with cerebral palsy, motivated by the new opportunities that opened up with the law, but also by the presence of many international organizations and foundations in Macedonia during the Kosovo crisis, separated from AIOM and established a networking association with the same name (Association of parent of children with cerebral palsy APCWCP). AIOM reacted slowly, but managed to expel APCWCP from the state system of support. The network soon disintegrated and only a few branches managed to survive and act at a local level. It is very a important lesson and a strong message for future dissidents.
Disability - the missing puzzle piece

The lesson notwithstanding, a proDPI cess of foundation of new associations of people with disability started As defined by the International organization that is still ongoing. At the moment of people with disabilities (Disability People there is dualism in the movement International - DPI) an association of people with disabilities is any association of which and organization of people with disthe majority of members are people with disability. On the one side are the traabilities or representatives of people with ditional unions organized by AIOM, disabilities who are unable to represent themwhich in 2007 changed its name into selves, and in the administrative structures National council of invalid organiand management of which sit outstanding individuals with disabilities. zations in Macedonia - NCIOM and Both requirements must be fulfilled. there are members of seven unions: Union of blind people, Union of deaf people and people with impaired hearing, Union of people with physical impairment, National Centre for support of people with intellectual disability Message, Union of people with injuries from war, Federation for sport and recreation of people with invalidity and Union of disabled workers. The membership in NCIOM is exclusive and new members are not allowed due to the financial issues. A little bit more on this is elaborated further down in the text. On the other side of this dual picture are over 200 so-called New organizations that have been established in the last fifteen years. The following are worth mentioning as being proactive: Polio Plus, Organization of students and youth with disabilities, Shpresa, Dignitas, the Regional Disability Centre in Prilep, Star, Ili n den, Open the windows, Give us wings, Handicap plus and others. We think that it is important to note that many of these 200 new organizations did not meet the basic requirements to be regarded as organizations of people with disabilities. That was confirmed by re-registering after the new law was adopted in 2010, where many of them, ceased to exist de-jure and the facto. The picture will not be complete if we do not mention the so-called old-new organizations that emerged from NCIOM disintegration process, especially the Union Message. The most active is Message - Negotino which leads the process of de-instutionalization in Macedonia, while New Message from Struga, Our Message from Kumanovo and some associations of APCWCP are also engaged in significant number of activities. Organizations in Macedonia which do not belong to people with disabilities (under SMI) but implemented some activities for people with disabilities acted in this area, especially in the period of heightened presence of international assistance in Macedonia. The most active and worth mentioning are the Association of Special Educators and Special Olympics. The activity of international and interstate organizations in Macedonia is not covered in this overview. And finally we need to mention the Trade Union of people with disabilities Egalite, established in 2008, which carries out significant activities in the field of employment of people with disabilities and protection of rights to employment.
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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Diagram br. 6 Are CSOs doing enough for epopel with disabilities ?

The aforementioned dualism induced such antagonism in the movement of civil association that at times it has brought about moments of open hostility. Needless to say, the casualty was the situation and the enjoyment of rights by people with disabilities. The process of articulation of a unified voice between the old and the new organizations on key issues affecting people with disabilities began in 2004, but little progress has been made. However, there are outstanding examples of joint action, particularly on the issue of accessibility and the need for ratification of the Convention which provides hope in terms of increased cooperation in complementary activities, and thus the impact of organizations of people with disabilities in social processes. For truths sake we must mention that duality is not displayed only between old and new organizations, but it goes deeper within the groups, especially due to the limitations of the state financial pie and reduction of foreign financial support. This dualism and ghettoization was formally given its legal shape in 2008. The Parliament passed a Law on invalid organizations1, which is a kind of lex specialis to the Law on Associations and Foundations and applies only to associations of people with disabilities. In essence this law does not regulate anything special except the funding of organizations of people with disabilities. Under this law, only organizations that joined NCIOM are eligible for funding, while other organizations can not get support from the state. This law sealed the dualism in the long run, and reaffirms the states role in this sphere as a follower of the old Roman rule Divede et impera (Divide and rule). The interesting fact is that a very small number of associations of people with disabilities are included in the work and the networks of the civil sector. Other than Polio Plus, there is almost no other OPD that is a member of a national network of civic organizations. This self-isolation leads to reduced impact, narrow

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1.

Law on invalid organizations, Official Gazette No.89, 2008

Disability - the missing puzzle piece

sector setting and a kind of ghettoiCONVENTION zation of certain organizations and in turn the people with disability in Under Article 33, paragraph 3, Member States, the community. in accordance with their respective systems of At an international level, only alorganization will, in the designation or establiances of NCIOM, depending on lishment of three tier mechanism to promote, protect and monitor the implementation of the the nature of disability, are memConvention, make it possible for the civil sobers of the relevant European and ciety, in particular people with disabilities and international associations. NCIOM their organizations, to have their representaas a whole is an associate member tives actively included and fully participating in the process, according to the principle of of EDF. From the new organizamovement of people with disabilities Nothtions only Polio Plus is a member ing about us without us. of EDF, DPI, associate member of It remains to be seen how the government EASPD and full member in ANED will incorporate organizations in the three tier and BANNET. monitoring system The UN Convention on the Rights of People with Disabilities and other international and EU documents lay down the obligation of government institutions to involve organizations of people with disabilities in the consultation process. This was common practice in Macedonia even before the country assumed the relevant obligations. The Government is not bound by a special Act to consult DPOs when drafting new legislation in relation to the people with disabilities, but when it does so, it is more like an expression of goodwill. There is unquestionably room for improvement in terms of inclusion and enhanced constructivism, that in turn will produce better effects. MLSP in 2004 established a register PARADOX of organizations of public intere st in the ministry2. Several organizations of people with disabilities CORIDOR 17.05.2003 The first, open, (and even) ceremonious sesare entered in the register, but only sion of the new lobby (IPPLG) was held in the declarative recognition of public Macedonian Parliament. All of a sudden, the interest from their work does not corridors (lobbies) were opened to the people fundamentally provide adequate with disabilities - though hardly anyone knew treatment. Such a register of pubwhere they would take us. The term systemic law (the ultimate goal of these missionaries) lic interest organizations should be started to wander off in its pursuit of backers. established at a government level, AIOM addresses the Parliament asking the under the new law on associations legislative house to avoid becoming a hostage and foundations, but the implemento a small and insignificant organization. tation of this law is still pending. They later (in 2005) publicly apologized for their attitude (towards Parliament, though not In the process of decentralization to Polio Plus) in Macedonia local authorities have
2.

Associations of citizens registered in the Register for association of citizens in the field of social protection

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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44

increasing powers on issues of concern STATEMENT to people with disabilities which necessitate consultation and involvement of The Unions organized in NCIOM, that are local organizations of people with disthe only beneficiaries of the funds generabilities in decision-making bodies of ated through lottery and games of chance local government. In this respect there exhibit infantile behaviour and thus look has been considerable progress in local like children on a beach building castles of sand and defending its imaginary city. authorities in a number of municipalities They are so ensconced in their sandy story in the country. It should be raised at a that they do not understand how porous it level of commitment and practice in all is and that the tide is coming to wash it municipalities in the country. away. Non-institutional example is the estabBy defending the funding they receive from other legitimate organizations of lishment of the Inter Party Parliamenpeople with disabilities, they will only tary Lobby Group for the Rights of create a front (a tide) of other NGOs (enPeople with Disabilities (the initiative vironmental, cultural, other vulnerable of Polio Plus) in 2003 where technical groups ...) with whom they will need share the cake, and if they fail to understand the and advisory Committee of the parlianew climate and time, they will lose what mentary group includes representatives they have. from over 10 organizations of people This is what actually happened in many with disabilities (old and new). post-transition countries. Institutional example is the inclusion of M-r - Spase Kostadinovski analyst people with disabilities in governmental National Coordinating Body for equal opportunities for people with invalidity (established in 2000). This body is composed of two representatives from the MLSP, Ministry of Health, Ministry of Education, Ministry of Public Works and Traffic, Ministry of Finance and two representatives from disability organizations: Association of the Blind people, Association of the Deaf and people STATEMENT with impaired hearing, Union of Physically Invalid People, Republic Centre Unlike the three state run universities, the for support of people with intellectual University of Southeastern Europe is accesdisability Message, Union of people sible in several aspects: from a physical aswith war injuries, Federation for sport pect through to access to information; literaand recreation of people with disabilture (lectures and books for the students are ity and Union of disabled workers . available in an electronic format), professorOne can at first glance notice that only student relations are at a high level, and the members (and all) of NCIOM are inAssociation finds this University fully accluded in this body. None of the other cessible in terms of respect for international organizations (old-new or new) standards. Nenad Markovich, are allowed to participate. But what is a student at the Stuhl University more difficult to notice is the wrong position of DPOs. The coordination of
Disability - the missing puzzle piece

STATEMENT
The main slogan of the movement of people with disabilities calling for a stronger involvement in the social mainstream decision making Nothing about us - without us is very clear. However, the manner in which it is practiced has become vague and nebulous. As a result of the interest and resistance to the redistribution of power by a large number of entities (without disabilities) who act on behalf of people with disabilities, the slogan was practically converted into a vulgar variant You are nothing - without us. Suad Zahirovich President of the LOTOS, BIH

government institutions could not be the responsibility of a non-governmental entity. DPOs should be corrective and participatory element in such bodies. However, the permission for domination in membership and leadership of this body (the President is DPO) undermines the role and renders them responsible and co-participative in the (non-) coordination by the government. The powers of this body only confirm the above thesis. This body meets as is required, at least twice a year. The body is chaired by the President. The Ministries in the body are represented at the level of heads of departments (who always have stand-ins). Conclusions of the body are not binding for the competent authorities that do not have obligation to consider them when maki ng decisions on appropriate issues. Therefore, this bodys conclusions have the value of taking a stance, public expression of opinion and so on. However, the Government provides to this body annually over 15,000 euros for its functioning. And so we come to perhaps the key problem. FINANCING Funds from lottery games are a significant source of funding for civil society organizations around the world and in reality (whether it is to someones liking or not) it can not be avoided when considering the current issue of funding for civil society in Macedonia, especially DPOs, of which only a few use these resources. In the still effective 1997 Law on lottery and games of chance3 (even with all its amendments), the following solution is set out: funds from lottery and games of chance are used to finance certain annual programs and objectives of NGO (programs of the associations of people with disabilities, sport and Red Cross of Macedonia).But the same article further inserts an additional solution to the effect that for this purpose, apportionment is made of 50% of total proceeds from lottery and games of chance set for the previous year. We must mention that in fact this solution is taken over from the regulation of former SFRY and the Macedonian specificity was in the change of the route of the money.
3.

Law for lottery and entertainment games, published in the Official Gazzete of R. Macedonia No.10/1997 54/1997, 13/2001, 2/2002 i 54/2007, 2010, 2011

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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Table no. 1. Data on actual versus allocated funds generated from lottery and games of chances 4. 2002 460.510 70.000 15,20% 2003 566.762 70.000 12,35% 2004 610.566 75.000 12,28% 2005 649.937 75.000 11,54% 2006 223.072 75.000 8,41%

Namely, in the past the funds were allocated directly from the Lottery of Macedonia to the beneficiaries and from 1997 money went to the budget of the Ministry of Finance and from there each year, by the decision of the Government, it is distributed to the beneficiaries. Now everything flows into the budget of the country, MLSP provides an opinion, and from 2012 signs contracts, but does not audit the expenditure. A solomonic administrative restriction was introduced on top of the aforementioned two solutions in early 2001 : amendments are added to specify that these funds can not be less than 60 million nor more than 120 million. The solution exhibits a high number of weaknesses and only one good aspect in that it protects the users in cases of low level of total proceeds from lottery and games of chance and the minimum guaranteed amount of 60 million is set in such cases. In the last decade these funds ranged from 20 million denars in 2001 to 75 million from 2004 onwards. However, this kind of protection misses the whole point. Figures show that the actual percentage provides anything by protection, and now money allocated from the total proceeds from lottery and games of chance is not 50%, but it fell to below 8%. In recent Macedonian history, the sole beneficiary of these funds as an organization of people with disabilities has been the NSIOM. No organization ever managed to receive funding on such basis, other than the unknown Venus in 2008, in the amount of 30,000 euros for the trip of Mile Stojkovski to the Olympic Games in Beijing (which never happened). We want to provide clarification for the uninformed and say that the text so far has made no mention of the regular annual allocations of 10 to 15 million by the Governmental by way of competitive process to all NGOs in the country (even the only winners mentioned above). One should not forget the funds alPARADOX located by local authorities to local organizations, some of whom are orCRIME STORY ganizations of people with disabiliAs Agatha Christie advices in every crime ties (most of them, member organistory, if something is not clear to you - folzations of the alliances of NCIOM). low the money. It was not in vain that Liza There are direct transfers on various Minnelli & Joel Grey sang us the song grounds by the governmental bodies Money makes the world go around and agencies. around.

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4.

See the publication: The Systematic Legislation for people with disabilities, 2006

Disability - the missing puzzle piece

This fact is often in the media, but there are no valid data on the scope, method and criteria for allocation. In the absence of firm criteria as to who is entitled to these funds, who makes this arbitrary decision and on what criteria, it is clear that in this legal vacuum this role is concealed (and intentionally so). Furthermore, all things being equal, this is the last area where due to the nature and significance of the issue, the principle arbitrium liberum decision based on free will and discretionary belief and determination should be applied. The entire narrative of civil association with so many actors, interests and relations appears to be a bit complicated.
CONCLUSION

CONVENTION
States Parties stated that in the development and implementation of legislation and policies to implement the Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to: Promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs.

Competent authorities in Macedonia on any level of decision making (central and local) are under no legal obligation to consult the DPOs when adopting regulation and taking actions that pertain to people with disabilities. The Convention imposes this obligation and yet this provision has not been implemented. There is a National Coordination Body for Equal Rights of People with Invalidity where representatives of Government and disability organizations participate, though its role is not clearly defined and its decisions and conclusions have no legal force or obligation to be taken into account by competent authorities. There is no separate body or institution to address issues pertinent to people with disabilities. The Government has not as yet filled the vacant position of Government advisor for the people with disability. The dualism of organizations of people with disabilities gives rise to negative tendencies in the exercise of the rights of their members. The Government has no policy for funding of DPOs. The distribution of proceeds from lottery and games of chance is arbitrary, questionable and inexpedient.

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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PARADOX
SHOO, SHOO ! When a burning problem in the area of disabili ty (be it individual or general in nature) needs resolving in Macedonia, in most cases we find ourselves in the so called negative conflict of competencies , which means that what happens in most cases is that no one is prepared to take the responsibility, and everyone is trying the get the chip off their shoulders. One such example is the attempt by the Mini stry of Transport and Communications, the construction department, who declared themselves as having no competencies in the matter regarding the request filed by the facilities accessibility inspectorate and referred us to MLSP.

pROPOSED MEASURES

There is a pressing need in Macedonia for regulation which, in line with the Convention, will determine the obligation of competent authorities at all levels of decision making to consult people with disabilities through their organizations when making decisions that affect their interests and to ensure their active participation in decision making. The state should establish criteria and standards for funding of organizations of people with disabilities according to their programs and activities of public interest, free from any arbitrariness and discrimination.

Linked
Legislation; Services for support and indipendent living; Monitoring Mechanizms; Public awareness

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Disability - the missing puzzle piece

3
SPE C I FI C AREAS
We mentioned several times that the phenomenon of disability is interwoven throughout all segments of society and that it can hardly be considered separately. However, some areas contain more essence than other and are more important in the everyday life of people with disabilities. Those interlocking areas are presented in Chapter 4. Education and employment in our opinion and due to the coexistence with the underlying philosophy of this document are placed at the beginning of this chapter. The main reason is that only education can beat disability. The word beat does not mean cure but simply - overcome. Only educated people can live with their own disability without frustrations and deprivation to fulfil and live its life. Of course this does not mean that there will be no problems that disability brings every day. The second reason and the second topic in this chapter is that only with adequate and quality education can we have a quality and profitable economic activity or employment. Although we stand for that the disability must not be seen as a medical problem and to be dealt in terms of medical issues, however the area of health and health insurance is very important for people with disabilities. The first reason is the fact that disability occurs as a result of accidents and health impairments which, if are not remedied, can lead to temporary, and often lasting disability. And it can last for years. The second reason is that for those people with congenital disability or such that is acquired at an early age, disability is not reduced but by the time is becomes worse, it gives rise to associated side effects. So disability is a condition that naturally escalates towards health deterioration. That is why people with disabilities require more a frequent and higher level of health protection.
Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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The above described three areas where people with disabilities tend to be exposed to negative impact, determine the need they often to become the object or beneficiary of the system of social protection. The biggest problem is that this system is provided for temporary or occasional provision of basic life functions of the individual found in a situation of inability to provide them or to its close family members basic life functions. But due to lack of effective participation in the first two areas (education and employment) and the real need of the third area (health), people with disabilities often become permanent instead of temporary beneficiaries of the measures of social assistance. And here is closed the vicious circle of exclusion and marginalization in society. In the further past of this chapter are presented some of the areas and the affirmative action of the organized community - the state that can mitigate or break this vicious circle. Alarming is the need to stop the practice of segregation of people with disabilities in institutions and their discharging and closing. The process of deinstitutionalizalization has started, but there is urgent need to complete it due to not human treatment in institutions, arbitry procedure for referral and collision with legal action for deprivation of legal capacity. Very close to this area is the complementary to the right to family life, the right to family and parenting, and support of natural families of people with disabilities as bank of subsequent unnecessary contraproductive adoption and institutionalization. The state establishes the legal framework but it is difficult to monitor each case individually. Therefore areas such as access to justice and judiciary, provisions and mechanisms for protection against discrimination and actions to ensure accessibility and availability of institutions, products and services for people with disabilities are very important for establishing a system that complements, nourishes and learns from itself. At the end are the areas that are often overlooked, but are essential for any human being to become realized as a social being. People with disabilities are no different from others. They are not people with disability; they just have different ways of realizing the same general-human needs. Therefore in this chapter we review the inclusion of people with disabilities in cultural life, sport and physical relaxation, entertainment and religion.

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Disability - the missing puzzle piece

3.1. Education
Only with education we can overcome the disability
Unknown

The perspective of education promoted by the Convention is based on inclusive education which not only provides the best educational environment includi ng the children with intellectual disabilities, but also helps in doing away with prejudices and overcoming stereotypes. This perspective assists in creation of a society which accepts the disability in good faith rather than being afraid of it. The Constitution of RM (article 44) states that: Every person shall have right to education, Education is available to everyone under equal conditions. The Law on primary education1(LPE) unequivocally supports the principle against discrimination. Namely, the Law (article 2) calls for prohibition of discrimination but only on certain grounds, the list is final and it does not cover the persons (students) with disabilities. Additionnaly the law says free of charge transport for students with disabilities regardless of the distance of their place of residence and in case of inability to provide transport, the student is entitled to free of charge accommodation and food in a boarding house or a family. (article 50 page 2 and 3). The LPE (article 10) stipulates that education can be organized and realized in health institutions. Such courses are organized in the Hospital Sv.Erazmo and Special Institute Banja Bansko. According to the information of SI Banja Bansko, 10 beneficiaries attend courses carried out by teachers, pedagogy teacher and defectologist educator in equipped classrooms and a music classroom. The same regulation is present in the Law on secondary education2(LSE) (article 3) in which disability is excluded from the list of prohibition of discrimination. The legislator calls for compulsory and free of charge secondary education and inclusion, but if possible in separate classes and of course with one defectologist per class. With the trend of inclusion in RM certain process of inclusion of the persons with disabilities in regular classes has been started, but their numbers are not registered3.
Law on primary education, Official Gazette no.103/08 dated of 19.8.2008 Decision of the Constitutional Court dated of 1.4.2009, Decision of the Constitutional Court dated of 15.4.2009, Decision of the Constitutional Court dated of 24.6.2009, 33/10, 116/10 and 156/10 and no.18/2011 of 14.02.2011) 2. Law on secondary education (Official Gazette of RM no. 82/99, 29/2002, 40/2003, 42/2003, 67/2004, 55/2005, 113/2005, 35/2006, 30/2007, 49/2007, 81/2008, 92/2008, 33/10, 116/10, 156/10 and no.18/2011) 3. According to the research: On the Path to EU: A Contribution of the Civil Society Sector in the Creation of Policy of Social Inclusion in the Republic of Macedonia, septemvri 2008
1.

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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In the research4 carried out in 2011 in reference to discrimination of persons with disa bilities, 38% of the parents declared that they have faced and are facing discrimination in the educational process on the part of teachers, other childrens parents and children without disabilities, 18% declared that their children have not been included in the educational process and 44% that they have not faced discrimination since their children learn in special schools. These schools look more like playhouses where segregation is fostered accompanied by limitation and marginalization, where programs are outdated, limited and are far from the new innovative market opportunities. In the absence of data about the number of children with disabilities in RM, one cannot talk about a rate of their inclusion in the education system, although it can be assumed that it is very low. There are justifiable assumptions that most of the children with disabilities are out of the education process, above all due to the system of classification5, which stigmatizes and discriminates and makes assessments under the criteria of defectology- medicine. There are statistical data on the inclusion of children with disabilities in the education system only for the special schools, which at the primary and secondary level of education are for children with intellectual disabilities and children with sensory disabilities, and the primary level covers children with physical disabilities and educationally under-privileged children. On the other hand, the special secondary schools are not inclusive, whereas the inclusion is reduced only to an access ramp. At the same time there are provisions which regulate the issue of students with disabilities in higher education. The Law for Higher education (LHE)6 provides for certain benefits, such as exemption of tuition fee (Article 87), and provision of free of charge transport and at the same time students are entitled to free of charge accommodation and food in dormitories. (Article 14). In Article 150, the law envisages allowances for accessibility, but it is left to be regulated by the Universities themselves. Such solution is not the best since it shall depend on CASE the will of the University, on whether or not the University will be accessible In 2010 on a initiative of the director, just for one pupil with disability, at the and available in every sense. secondary school E.T.U.C Mihailo PuA total of 47 students with disabilities pin, was build a ramp and posted elevaare enrolled and registered at 22 facu tor. Untill the things have been made, the lties7 at the University Ss Cyril and person has graduated, but the achivments Methodius in Skopje, with 62 faculare for the future generations. ties inaccessible.
4. 5.

52

Analysis of the situation of persons with intellectual disability, Poraka 2010 Regulation for assessment of specific needs of persons with physical and mental development disabilities Official Gazette of RM no. 30/2000 g 6. Law on Higher education (Official Gazette of RM no.35/2008, 103/2008, 26/2009, 83/09, 99/09, 115/10 and no.17/2011) 7. Research of students with disabilities in the faculties at the UniversitySt. Kliment Ohridski,Skopje, 2011

Disability - the missing puzzle piece

Diagram br.7 Are the arhitectural barriers overcome in the univesity St. Kiril i Metodij ?

Pre-school education is regulated by the Law on protection of children8. Unlike the previous laws, the list of prohibition of discrimination, fortunately or not, includes disability (Article 9). Public kindergarten should organize, take care and educate children with disabilities (Article 48) with customized individu al programs, with additional professional assistance within the standard groups. The programs are prepared by Bureau PARADOX for educational development (BED)9 who most certainly are on the right The doors of the kindergarten Vesela track in terms of meeting the objective. druzina were closed for the five year old The legal provisions are upgraded with Markijan. the action plans The National strateThe explanation of the kindergarten was that the parents of the other children threatgy for equal rights of the persons with ened that if Markijan stays that they will 10 invalidity in RM but without some write-off their children. changes in terms of approach to the issue of disability. With the Law on use of sign language PARADOX (article 9)11, the school organizes learning of sign language by introduction MANUEL v.s ELECTRONIC In the high school for visually impaired of a course. Unlike the sign language, persons Dimitar Vlahov in Skopje, until the Braille alphabet is not regulated by recently they had a subject (and thus an ocany laws or by-laws. cupation) manual telephone switchboard The situation is more dramatic in prioperator. vate schools, private courses that are When we asked them in amazement why they were educating people in professions provided by private and public instithat, in this age of electronics and computtutions which are not accessible and ers will be wanted by no one, they said that available, and neither are they ready the teacher running the course had twoto include persons with disabilities in three more years to retirement?! their programs.
Law on protection of children (Official Gazette of RM no.98/2000; 17/2003; 65/04, 113/05, 98/08; 107/08; 83/09 and 156/09), Decision of the Constitutional court in RM, Official Gazette of RM no.46/2009 10. Bureau for educational development http://www.bro.gov.mk/?q=obrazovanie-za-deca-so-posebni-potrebi 11. National strategy for equality of the rights of persons with invalidity in RM 12. Law on use of sign language Official Gazette of RM no.98/2000
9.

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

53

There is very little progress in the spatial-architectural accessibility and availability of primary, secondary schools and universities, student dormitories, boarding houses; there has not been adaptation and reconstruction yet, new buildings are not built in compliance with the standards for accessibility, etc. In this black picture there are some good examples of initiatives where certain education institutions have ensured complete access. Unfortunately, these initiatives are ad hoc and often depend on the will or initiative of the school director or the mayor.
pROPOSED MEASURES

In order to ensure compete inclusion and to avoid confusion above all in the approach, the state must change the perspective on the disability and the method of assessment of the degree of disability and all this should be accompanied by redefining and restructuring of the commissions for classification of disability. The state needs to carry out systemic changes in the legislation and develop new forms of acquiring educational qualifications; At the same time, it is necessary to raise the public awareness among teachers and the public as well; Promotion and introduction of appropriate educational programs; Transformation of special schools into rehabilitation centers; Preparation of programs for obtaining non-formal education for CONVENTION the persons with disabilities; The Convention requires that the Member states Development of new educational recognize the right to education for persons with support services apart from the disabilities without discrimination, on the basis of defectology services.
LINKED
Social protection; Accesability; Non - discrimination; Services for support and indipendent living; Monitoring Mehanizms; Public awarenes;
equality with others and provide inclusive education at all levels. For this purpose, Member states shall ensure that: the persons with disabilities are not excluded from the general educational system on the basis of disability; liability to ensure that no person with disability is excluded from the compulsory primary or secondary education that needs to be free of charge, inclusive and in the local community on the basis of equality with others, to provide reasonable adaptations, assistance and support to persons with disability within the frameworks of the general education system; to facilitate the learning of Braille and alternative alphabets and sign language; to provide access to persons with disabilities to general tertiary education, vocational training, adult education and lifelong learning without discrimination.

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Disability - the missing puzzle piece

3.2. Employment
The labour created man himself
Friedirich Engels

If the labour created man himself, does this position in which persons with disabilities are pushed make them humans or apes? In everyday life in our country, persons with disabilities are dependent on charities, benefits, rather than being provided corresponding employment. The Constitution1of RM stipulates (article 32) that everyone shall have the right to work, free choice of employment, occupational safety and financial security during temporary unemployment. Hence we can conclude that persons with disabilities shall have the right to work under the same conditions as others, and that they must not be discriminated. Three further articles in the Constitution (article 35) separate persons with disabilities (invalid poeple) as a distinct group of citizens that require special protection. Appropriate and equitable representation of the citizens who belong to all communities in the all the bodies of state administration and other public institutions at all levels is guaranteed with the constitutional amendment VI. In this section, the legislator foresaw all communities and their equitable representation, but forgot to mention the issue of disability so as to avoid multiple discrimination of citizens with disabilities by their communities and their representation in the state authorities and public institutions at all levels. Employment of persons with disability in RM is regulated by the Labour Law (LL)2 which contains complete provisions against discrimination on several, grounds among which is also disability (article 6). The significance of this law is that it provides an opportunity for application of positive measures concerning the special protection of certain category of workers, including persons with disabilities. Another significant provision is article 10 which provides compensation against discrimination of persons victims of discriminations. The Labour Law contains no separate provisions for employment of children with disabilities up to 15 years of age. The law contains general provisions for the minimum age of the employee in order to meet the legal requirements for employment and the general health status. With such legal resolution, the children above the age of 15 that have certain disability are put in a discriminatory position compared to the other older under-aged that under certain conditions set for this age can be hired.
1. 2.

Constitution of RM Official Gazette of RM, no.158/2010 Law on Labour, Official Gazette of RM, no.158/2010

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

55

Article 178 regulates the issue of profesSTATEMENT sional rehabilitation. Paragraph 2 therein prescribes that the employer shall be reWith establishment and incorporasponsible to provide other corresponding tion of the trade union of persons position to the employee where there is an with disabilities Egalite, the emimmediate danger of occurrence of invaployees with disability faced strong lidity and to ensure that the person is paid resistance by the employers. The harassment and depreciation of relevant payroll taxes concerning the realipersons with disabilities gained zation of this right. Moreover, the legislator ground. Many of them were forced forgot to clarify the immediate danger and to withdraw from the union if they hence it is left to be understood, defined, wanted to keep their jobs. applied as certain interests from this or that There are cases where employers offer even monetary compensation party may prescribe. Whether there is a danto withdraw from the union. ger for the occurrence of disability is determined by a Commission for assessment of Elena Kocoska president of the Trade business capacity at the Fund of Pension and Union for persons with disabilities Invalid inssurance of Macedonia (PIOM) Egalite (article 131 from the Law on pension and disability insurance3) comprised of recognized and prominent medical experts. In general, disability and employment is regulated by the Law on employment of invalid persons4(LEIP), as lex specialis to the Labour Law. Enacted in 2000 it has suffered twelve amendments and alterations, 2 per year in 2004, 2005, 2007,2008 2009 and twice in 2011. This law regulates the special conditions for employment and working of persons with disabilities (when they perform the profession or business activity independently with an employer or they have a title of employer) as well as the conditions for establishment and benefits for operation of a trade company for employment of disabled persons. This law is accompanied by: the Rulebook for vocational training of persons with disabilities, the Rulebook for assessment of the specific needs of the persons with disabilities in physical and mental development, the Rulebook for criteria and manner of allocation of funds from the special fund for provision of conditions for employment and working of persons with disabilities. In the Law on employment of disabled persons, the measures for active inclusion of the persons with disabilities at the labour market are tailored through form of associations for protection and an opportunity for a sole trader. The state provides benefits for the employers that establish companies for protection and compensation per person with disability as an initiative for their contribution. In article 4, paragraph 6, the state decided that if persons with disabilities would like to have a title of employers, they will have to be subject to additional assessment of their capacities by the Commission for assessment of the business
3.
4.

56

Law on employment of invalid persons (Official Gazette of RM no.44/2000, 16/2004, 62/2005, 113/2005, 29/2007, 88/2008, 161/2008, 99/2009 and 136/2011)

Law on pension and disability insurance- 2012 year

Disability - the missing puzzle piece

capacity at the Fund of PIOM, in order to obtain the so called Diagnosis, assessment and opinion for the types of work the person is able to execute. Often times, employers are defined as companies (entities) from the private sector but still it is often forgotten that basically the Government is the largest employer. In our case, the state enacted this notorious law, and yet it forgot to apply it and to set an example for the others. Even the resolution of the Government of RM from 2009, every public institution to hire at least three persons with disabilities did not give any results. For the day-to-day flow of the LEID, the state established a Special Fund for employment of persons with disabilities which receive funding to the tune of more than 3 milion Euros5per year. A Management Board (MB) was established for managing of this Fund by the state itself in conjunction with the Association of companies for protection. The persons with disabilities are entirely omitted through their trade unions. The allocates 2% from the Fund for day-today operation of this MB. There are other laws that address this topic. The Law on civil servants6 regulates the issue of employment in the public sector and does not even mention the issue of disability. But at the same time it is filled with discriminatory provisions against citizens with disabilities in that it defines a conditionality of a general health status.

PARADOX
INTELECTUAL ACTIVITY Vesna from Veles, a person with physical disability in a wheelchair, a law graduate, decided to open her own law office pursuant to Law for employment for invalid persons, as an employer. MLSP rejected the person and upon joint request for explanation, the MLSP responded that the person might not be able to work as a sole trader since intellectual activities are not covered by the Law.

PARADOX
UNAUTHORIZED The Constituional Court of RM upon the submitted appeal by Polio Plus for the obvious direct discrimination by the Law for employment of invalid persons, declared itself unauthorized to act.

PARADOX
HAVING NO COMPETENCIES, AGAIN
The commission for protection against discrimination declared itself as having no competencies to initiate a procedure upon an application filed by Polio Plus concerning overt discrimination in LEIP as per CRPD, since that was a ruling brought by the constitutional Court. They seem to have forgotten that in the meantime, the Law on protection against discrimination was passed and the Convention was ratified!?

5. Law on employment of invalid persons (Official Gazette of RM no.44/2000, 16/2004, 62/2005, 113/2005, 29/2007, 88/2008, 161/2008, 99/2009 and 136/2011) 6. Law on civil servants, Official Gazette no.59/2000.

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The Law on occupational safety7and Law on Occupational safety and health8 do not have specific provisions relating to persons with disabilities. This demonstrates that the legislator did not think that these laws may to a certain degree affect the issue of disability. Law on court service9 (article 12), and Law on courts10 (article 45), again underline the existence of general health status. Thus if persons with physical and sensory disabilities do not obtain a certificate for general health status, their disability would serve as the basis for discrimination, since although they can factually perform the function, they would not be selected on the grounds of this condition. This condition is not required for the candidates for lay judges, which in any case is positive, but the same condition is foreseen for the performance of attorney function in the Law on attorneys11(article 12). According to the data provided by the Employment Agency of RM12, up to the end of 2011 there were 2.165 persons with disability registered as unemployed, out of which 777 women and 1388 men. 38 % of those are persons with intellectual disability, or 38%, 439 or 20 % with physical disability and 301 persons that acquired disability at work. On the other side up to 2011 only 3090 persons with disability were employed in sheltered companies. On the basis of a survey conducted by the association Ergos, it has been concluded that the largest number of employed are persons with physical disability (69%) followed by persons with impaired hearing (19%) and persons with intellectual disability (13%). Regarding the economic activities where persons with disabilities are employed, most dominant are graphic printing, food and textile industry. In practice, persons with disabilities are employed mostly in companies for protection, and rarely use the form of a sole trader.
CONCLUSION

The law itself as affirmative measure stimulates the employers to employ persons with disability not because of the abilities of these persons but because of the benefits. The law basically stimulates only the small-medium enterprises to employ persons with disability while the larger ones are not even interested since the benefit and the compensation per person is too small for them. Such established legal framework is far from meeting the opening of the labour market for persons with disability. In order to provide equal opportunity for the citizens with disabilities to participate in the labour market, it is necessary to undertake structural and system reforms.
Law on civil servants, Official Gazette no.59/2000. Law on occupational safety, Official Gazette no.13/1998 9. Law on occupational safety and health , Official Gazette no. 92/2007 10. Law on court service, Official Gazette of RM, no. 98/2008 11. Law on courts, Official Gazette of RM, no. 58/2006 12. Law on attorneys, Official Gazette of RM, no. 59/2002 13. Agency for employment http://www.avrm.gov.mk/WBStorage/Files/invalidnivozrast122011.pdf
7. 8.

58

Disability - the missing puzzle piece

pROPOSED MEASURES

Above all, the existing Law on employment of persons with disabilities should be entirely cancelled or modified, wherein the protection measure shall have a possibility to be transferred to affirmative action in accordance with the policy and principle of the persons with disability Nothing for us without us, and new positive activities-measures such as the quota for employment and vacant chair shall be promoted. Promotion and introduction of leaders from amongst persons with disabilities in the economy and campaigns for the need the persons with disability to engage actively on the market and to become entrepreneurs. To overcome the existing discriminatory elements in the other laws, it is necessary for the state to review the laws and bring them in compliance with the Convention. In this aspect it is also necessary to modify the Constitution of RM in such way that shall guarantee equal representation of the citizens with disability in all state and public institutions at all levels. Despite the modifications of the legal framework, RM should make systematic reform of the system for classification of the persons with disability and termination of the nebula that certain experts (defectologists and social workers) determine the potentials and types of work that a person with disability can perform. Establishment of a mechanism for stimulation and motivation of large enterprises to employ persons with disabilities, as CONVENTION well as mechanisms for self-employment of persons with disability. The Convention in article 27 outlines the Establishment of semi-independent responsibilities of the states: to prohibit body for management and leading of any kind of discrimination of persons with disabilities and to provide them with equal the Special Fund for employment of rights and opportunities for employment in persons with disabilities. relevant work conditions; persons with disIt is necessary to develop new training abilities to have equal opportunities for usage of technical and professional operating programmes for professions and fields programs, programs for training and career that are attractive to the persons with development; to promote and stimulate disabilities as well as open business inself-employment of persons with disabilities, employment in the private sector and cubators for them.
LINKED
Education; Social protection; Accesability, Service for support; Legal capacity; Poblic awareness; Non - discrimination;
generally their access to the labour market, as well as to employ persons with disabilities in the public sector The Convention promotes the Open Labour Market for the persons with disability. In the Convention the reasonable accommodation and appropriate policies and measures, which may include affirmative action programmes, incentives and other measures are promoted for the employers and effective example of those measures are the quotation system and the system of empty chair.

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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3.3. Health
In nothing do men more nearly approach the gods than in giving health to men.

Ciceron

The health care system in Macedonia is a social system for health insurance based on compulsory contributions. The provision, protection and access to the right to health care for the persons with disabilities in Republic of Macedonia is regulated in several laws and bylaws. The Constitution of RM (article 39), everyone is entitled to health care and availability of it under equal conditions. This would mean the citizens with disability as well. In the general provisions of the Law on health care (LHC)1, article 3 states that everyone shall have the right to health care, and article 4 contains the valu es and principles health care is founded on availability, efficiency, continuity, fairness, comprehension and ensuring quality and reliable health treatment. In the principle of fairness (article 9) the list for prohibition of discrimination contains the issue of disability (mental or physical disability). In primary health care, in addition to the other measures, there is an activity for health treatment and medical rehabilitation of the citizens with disabilities (article 30 point 9), while health care at a secondary level (article 35) covers specialist-consultative and hospital health care (diagnostics, treatment, health care and obstetric care, medical rehabilitation and palliative care). Such defined articles lead to conclusion that the state has made quite a progress at least in stating the values, principles and basis of discrimination but none of them functions in practice. As an example, we will take the availability and unfortunately public, as well as private health care institutions (hospitals, pharmacies, clinics, dental offices and gynecology practice) are still neither accessible nor available to people with disabilities, although Law on health care prescribes the conditions for each health care institution and issues resolutions by Ministry of Health (article 62), and as for the principles of efficiency and ethics they are far from the normal although the Ministry of Health issues license for operation to these health institutions.

60

1.

Law on health care (Official Gazette of RM,no. 38/91, 46/93, 55/95, 10/04, 84/05, 111/05, 65/06, 5/07, 77/08, 67/09/)

Disability - the missing puzzle piece

This law is accompanied by the Law on health insurance (LHI)2. According to article 2, health insurance is established as mandatory with a set package of basic health care services for any citizen. No mention is made in the list of insured in the law (article 5) of citizens with disabilities, except for the military and civil disabled persons. In such set list of insured the state makes discrimination again on the basis of disability, providing benefits only for the military and civil disabled persons. They turn a blind eye to the fact that DISABILITY IS DISABILITY, regardless of whether it is civil or disability from collateral social damage, it still is about disability. The package of basic health care services includes primary, specialist-consultative and hospital (short-term and long-term) health care and the drugs according to the list of drugs that the Fund defines with a general act. The package of services (article 9) in primary health care is pretty modest and far from meeting the needs of the citizens with disabilities. The responsibility of the state for early detection and intervention is regulated in article 32 of Law on health care and article 9 of Law on health care (as part of the basic health care services). However, in the absence of further elaboration (in laws, bylaws and in specific policies and programs) this responsibility is not carried out in practice in form of systematic and continuous activity of prevention. Home care services (visiting nurse), as specialized form of care, include a series of functions of public health care. Similar to the home visit, this service is based on family needs including post-natal visits to mothers and their newborns. But in such set structure of visiting services and the service of in-home service, persons with disabilities are not included at all. In this entire system there is the chain of licensing, training, monitoring and evaluation is simply missing. As to specialist-consultative care, the insured have the right to prosthetic, orthopedic and other aids, assistive and sanitary devices and materials and dentaltechnical aids according to indications determined with general act by the Fund which is subject to a consent by the Minister (article 9, paragraph 1, item b)-3)). In the hospital (short-term and long-term) health care, the state provides testing and diagnosis of health status, treatment, rehabilitation, care, hospitalization and food in hospital settings; drugs according to the list and of course accommodation and food for attendant where accompanying of a child up to 3 years old while it is hospitalized is mostly up to 30 days. The basic health care services (article 9) are provided by the Fund for the insured persons in the health institutions in the amount as defined in the Pricelist of health care services in Republic of Macedonia adopted by the Management Board of the Fund.
1.

Law on health insurance ( Official Gazette of Republic of Macedonia, no.34/2000 - correction; 96/2000; 50/2001; 11/2002; 31/2003; 84/2005; 37/2006; 18/2007; 36/2007, 82/2008, 98/2008, 6/2009, 67/2009 i 50/2010, Decisions of the Constitutional Court of RM published in Official Gazette of RM no.104/2000; 30/2001, 48/2001; 109/2006 and 88/2007-two; 106/2007, 45/2009 and 14/2010 Decision by Constitutional Court of RM).

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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The insured person can realize its right STATEMENT to orthopedic aids pursuant the new 3 Regulation only on basis of a certifiI am 59 years old, I am a person with discate confirming the need for orthopeability. I submitted a request to the Center for social workStruga for a wheelchair dic aid which is issued not only by one since I cannot move. The wheelchair gives but three doctors specialists from me an opportunity to move somehow, alrelevant specialty which in turn is to though the environment where I live is inbe verified by a Commission of Phyaccessible and not adapted for persons with disability. sicians of the Fund with diagnostics My nephew went to submit the request and opinion on the need for use of since I was not able to do that. The first such aid (article 6). thing that they requested from him is to make a document notary certified that he On the basis of a verified certificate for is my proxy?! Also in the Center for social the need of orthopedic aid, the insured workrequested from me to sign a statement person collects the approved orthopethat the wheelchair shall be returned in normal state without any damages after five dic aid from the orthopedic company years of its usage?! that produced it, i.e. sells such aids The wheelchair is an essential tool that with additional documentation and gives me mobility and I cannot understand statements that the person shall take how anyone request can from me to return the wheelchair without damages when I due care of the aid and if God forbids, will be using this wheelchair over a long dies the aid shall be returned in proper period. condition. Blagoja Trifunovski The type and quality of these aids are defined with a general act of the Fund for health insurance (which may mean possibility for limited interpretation of the law provisions). Orthopedic aids can be purchased at different time frequency. The situation gets more complicated for the persons in a wheelchair or people who need orthoses or aids to assist them in performance of daily activities. Rehabilitation is a problem in itself. With the amendments of the new Regulation for exercise of the right to health insurance, the Fund for Health Insurance PARADOX had compassion and in the so called specialized medical rehabilitation TOP BRAND DISABILITY One can purchase the orthopedic shoes provided special benefits for the chilBRAND DISABILITY only once a year with dren with cerebral palsy. They have a surcharge of 10% (depending on the need and right to medical rehabilitation as conheight). Only for additional payment of 200 to 800 denars can you have top shoes for summer tinued hospital treatment depending and winter. on their age, from one spa treatment If you need one more pair from this brand, then even four times per year for children you have to pay a price from 1.500 to 7.800 denars (if you have truncation of 10 cm). aged 1 to 4, from the designated 21 days even up to 30 days.
3.

62

Rulebook (On the basis of article 9, paragraph 1b, point 3, article 33 and article 56 paragraph 1 point 3 from the law on health insurance (Official Gazette of RM,no. 25/2000, 34/2000, 96/2000, 50/2001, 11/2002, 31/2003, 84/2005, 37/2006, 18/2007, 36/2007, 82/2008, 98/2008, 6/2009, 67/2009 and 50/2010)

Disability - the missing puzzle piece

For children aged 4 to 14, there is a right to medical rehabilitation twice a year for up to 30 days during the year. If we take into consideration that the rehabilitation is one of the important issues for the citizens with lifelong disability then the legislator put them in an entirely unfavorable condition, since one can take the rehabilitation as continued hospital treatment for 21 days. This means that if you like to take advantage of the right to spa treatment, you will need to be hospitalized first and then three specialists together with the Commission should determine the need so that you can exercise this right. Otherwise, you need to pay 1.200 den per day according to the standards and pricelist of the Fund for Health Insurance. If we consider that persons with disabilities are on the verge of poverty, where one parent most commonly does not work, this situation is not at all considered favourable for the citizens with disability. This is complemented by the non-existence of a support system for the citizens with disabilities who are in need of companion, since almost all places are inaccessible, even part of the spas which means that they are left to the mercy of health care personnel who on the other hand struggle with insufficient know ledge of the phenomenon disability. The services from tertiary health care are far from the citizens with disabilities and they are not at all free of charge. The prices are quite high and hardly affordable to the citizens that need them. According to the Law of the rights of patients, the patient shall have be entitled to exercise rights prescribed by this law, without discrimination. Unfortunately, the citizens with disabilities are overlooked and omitted from the list (article 5, point 2). The Law regulates the right of a patient to participation in the decision-making. The Law on mental health care regulates some of specific health- related rights of citizens with disabilities. Article 7 of the Law stipulates that: Personality, dignity and privacy of each person with mental illness must be respected. The Law, also, provides that every person with mental illness shall have the right to care, treatment and rehabilitation, which to large extent are consistent with his individual needs and abilities and develop the state of his mental health in order to enable inclusion in the community (article 9). In 2009 the Law on records in the healthcare field was enacted, and according to this law, Health Institutions shall keep individual records for children with disabilities (article 8), and the National Institute for health care shall keep records of children with disabilities (article 11). Record keeping has extremely large significance to the provision of proper health care services, but it is also a necessary condition for designing policies of affirmative action and non-discrimination. Development of the existing legal framework for health insurance for provision of drugs on prescription from the positive list of drugs with relevant act for availa bility of the above mentioned.

Baseline rewiev of the situation of people with disabilities in Macedonia (2012)

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PROPOSED MEASURES

CONVENTION
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including healthrelated rehabilitation. In particular, States Parties shall: a. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes; b. Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons; c. Provide these health services as close as possible to peoples own communities, including in rural areas; d. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care; e. Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner; f. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Adoption of an act that regulates the standards and procedures for rehabilitation centers as well as free of charge medical rehabilitation for persons with disabilities. Adoption of a special act which defines which health care services that are not covered by mandatory health insurance shall be classified as basic health care services. Adoption of regulation for sorting out the right to a companion in cases of hospitalization of a person with disability. Provision of programs of habitation and rehabilitation based on multidisciplinary assessment of individual needs, At the same time, there is a need for education of health care professionals on operating beyond the institutional matrix and seeing the disability from the perspective of human rights. Persons with disabilities need to be included in the MB of the Fund for health insurance.
LINKED
Accesability; Legislation; Servise for support and indipendent living; Social protection; Non - discrimination;

64

Disability - the missing puzzle piece

3.4. Social Welfare


When I give food to the poor, they call me a saint. When I ask why are they poor, they call me a Communist
Don Kamera

The issue of disability is still traditionally treated as exclusive competence of the Ministry of labour and social policy (MLSP). The Law on social welfare (LSW)1, covers various rights from the field of the social welfare, which entirely or in certain segments refer to the persons with disabilities, but there are rights prescribed only for the persons with disabilities. According to the LSW invalid person is a person with mental and physical impairenments (article 17). In the basis for discrimination (article 20) incapability is mentioned as the basis for discrimination, while the disability is left over. If the legislator thought that incapability is disability, then it is no wonder why all measures and provisions exhibit defectology-medical features. The thing that should be understood above all is that disability, speaking in mathematical terms is not an equation, it is not equal to incapability. Pursuant to LSW, the rights are conceptualized within the frames of non-institutional and institutional care. Non-institutional care (article 26) covers: the right to primary social service of the social welfare, individual aid, family aid, home care and individual and family care, daily and temporary custody and care as: individual and family aid, accommodation in foster families, accommodation in small group boarding house, and independent living with support. The right to social service of a social welfare beneficiary (article 27), can be exercised by persons with disabilities more in an indirect manner in CSW. If there is a need, the beneficiaries are referred to and connected to other (relevant) competent services that function within the frames of Center for social workand beyond it. The right to individual and family aid (article 28 and 29) means application of appropriate forms of professional counselling or advisory tailored to the specific need of the person with disability and in order to provide preservation and develo pment of the health potentials of the person and normal operation of the family. This right does not function in practice. Depending on the type and degree of disability, under article 30, persons with
1.

Law on social welfare, cleared text of MTSP, Official Gazette no. 79/09,36/11 i 5/11

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disability shall have the right to home care and assistance. This right can be exercised by persons with disability who are not capable of looking after themselves, and in satisfying their existential needs, these persons need assistance by other persons over 26 years of age. By the age of 26, the state considers the persons with disability as children, since they exercise this right as child allowance pursuant the Law on child protection2, article 8 where the right to special allowance for persons with mental and physical disabilities up to 26 years of age is defined. Home care and aid to the person with disability is provided even when this persons live with his/her family. The exercise of this right is connected to article 132 from this law, in that it provides for the establishment of a Centre for provision of assistance in domestic circumstances. Unfortunately, in our practice this does not function, or in other words, there is no such centre. Beneficiaries realize this right in the form of monetary allowance for assistance and care from third person or known as third person assistance and care. This right is transcribed in the right to monetary allowances. The right to social monetary allowance is legally granted to person capable of work and having a household, financially insecure and according to other regulations cannot provide financial means for existence. This right refers to families of a person with disabilities which are often on the edge of survival. But the same is connected to realization of income of the person or the household which on every ground should be less than the amount of the social allowance, and certainly this person or household should not possess property and property rights that can provide means of existence. This right is regulated by a roolbook. The right to permanent monetary allowance is enjoyed by a person incapable of working and financially insecure who cannot generate any means of existence on the basis of other regulations. This category includes persons with disabilities such as persons with moderate, severe and grave disabilities in mental development and person with combined and other development disabilities, who cannot obtain any education because of the degree of disability, as well as person with physical disability that makes him/her incapable of work; This incapacity is determined by an Expert Commission for giving diagnostics, assessment and opinion for incapacity of work regulated by special Regulation3. In addition, the Centre for social work can conduct direct inspection for purpose of assessment of the factual state of the person and the family upon decision of the competent centre and at least once in a year. This right is explored a lot by the persons with disabilities. Due to the established system of categorisation, many people with disabilities fall into this category.
Law on protection of children, cleared text of MTSP, Official Gazette of RM, no. 170,2010 Regulation for manner of exercise of the right to permanent monetary allowance (cleared text Official Gazette no.146/09, 59/2011 and 123/11)
2. 3.

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Disability - the missing puzzle piece

However, the state will have to define what incapable means, i.e. what is their interpretation of incapable. At the moment there is no distinction between health status and capability. Such set system of classification and assessment of the persons as incapable leads to generalization of mentality of disability up to the level of discrimination, marginalization through to complete exclusion of persons with disability from society. Such set benchmarks hold true when it comes to the right to monetary allowance for third person assistance and care, as well. This right can be exercised by a person over 26 years of age with moderate, severe and grave mental development disabilities, person with severe and most severe physical disability, totally blind person, as well as person with lifelong changes in health status who demand essential assistance and care from a third person since the above defined person cannot satisfy the basic life needs by himself/herself, unless he/she can exercise this right on the basis of other regulations. The amount of monetary allowance for third person assistance and care is determined depending on the extent of the need for assistance and care from third person, and it ranges between 3.702 to 4.185 denars (article 74 and 75), which does not close to covering their needs. As in the other cases, this right is obtained upon an opinion of the Expert Commission for giving diagnostics, assessment and opinion for the need of third person assistance and care (article 203, paragraph 2 and 3), while the Center for social workchecks the development of the status of the person with disabilities. This right is governed by a rulebook4. The above mentioned prescribes special conditions for control of persons with disabilities who exercise the right to third person assistance and care and again the legislator puts everyone in the same package. Namely, there is no need to check and review the persons with lifelong disability at every 6 months. PARADOX This status should be distinguished from the condition after a traffic acOne eyed Jack cident, stroke, etc. Imagine four people, each of whom has lost one The right to allowance for blindeye, their left eye, for example. The first one ness and the right to allowance for lost his eye as a result of a virus that has atmobility is granted to totally blind tacked the eye nerve, the second one in a child game, the third one due to a splinter that pierced persons over 26 years of age and to the eye and the fourth one as a result of playing persons over 26 years of age with soccer with an unexploded World War II bomb. 100% physical disability and person Believe it or not, the difference in financial supwith moderate, severe and grave disport between the first and the fourth Jack is abilities in the mental development over MKD 13 000. And the four of them suffer from the same degree of disability!? who cannot satisfy the basic life needs without assistance of a wheel4.

Rulebook of manner of exercise of the right to monetary allowance for third person assistance and care (Official Gazette of RM no.122/09)

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chair, determined by a competent body and with a resolution issued by Center for social work. The monthly fee of this allowance (blindness and mobility) is projected to amount to 7.000 denars, and for 2012, 907.200.000 denars are budgeted. This measure, instead of contributing to more active citizens, represents grant for sitting at home, passivity of the already inactive citizens with disabilities, which at that same level leads to discrimination, marginalization and their entire exclusion. Even the title itself indicates that the legislator merged two rights. The right to mobility and blindness allowance which are two different categories. On the other hand, the legislator with this measure puts citizens under age of 26 years in an unfavourable position. Thirdly, the legislator highlights only those with 100% disability and in a wheelchair, which puts the citizens with lower degree of disability (90 to 80%) and the persons with intellectual disability in an unfavourable position. One-off monetary allowance or aid in kind (article 79) is granted to a person or a family which is under social risk, as well as to a person or a family who have suffered natural disaster or epidemic and longer treatment in a health institution. This right is governed by a special rulebook5. The aid in kind covers provision of clothes, food and other means as the Center for social work finds necessary for minimal existence of the citizen and the family. The amount of the single monetary allowance might be up to 30.000 denars as follows: for person who needs surgery or longer treatment in a health care institution abroad, person without secured housing beneficiary of permanent monetary allowance, as assistance in providing necessary accommodation up to 15.000 denars for the needs of a family member who is a person with mental disabilities or person with permanent physical disability, that can realize the right to accommodation in an institution up to 12.000 denars for satisfying of the needs of a person or a family that is in a position of social risk in case of longer treatment in a health care institution. The Right to health care pursuant to article 84 belongs to the beneficiaries of permanent monetary allowance; persons placed in foster families; persons placed in institution for social proSTATEMENT tection, (for institutional and noninstitutional care); beneficiaries of My allowance for care was reduced because monetary allowance for third person the social service considered my condition as assistance and care-person who up improved, even though I have a diagnosis of to 18 years old of age had a status of a muscular dystrophy that has a progressive a child without parents and without character, and my condition is getting worse day by day. Even though Im in a wheelchair, parental care, at least up to 26 years I do not receive allowance for care of the first old, person covered by organized livcategory. ing with support; Aco Cvetkov od Struga
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Regulation of manner of exercise of the right to monetary allowance for third person assistance and care (Official Gazette of RM no.122/09)

Disability - the missing puzzle piece

LSW regulates the allowance of salary for part-time work due to care of a person-child with disability. Such right is foreseen for the employed parents of a child with disability in Law on labour, and the Law for socail welfare provides for allowance of salary to full-time working time of the parent, that might be exercised in the Center for social work. This right is regulated with a special wance is 4.800 denars. Regulation6. The amount of the allo Within the framework of institutional care for persons with disabilities, the following rights are foreseen: right to training for labour-manufacturing activity and the right to accommodation in an institution for social care. According to article 18, the right to training for labour-manufacturing activity is granted to persons with moderate and severe disabilities in the mental development. The right to training for labour-manufacturing activity includes referral to institution for social care, compensation to the expenses for accommodation and food, compensation of the expenses for training for labour-manufacturing activi ty and compensation of transport costs. The right to placement in an institution for social care (article 19) is granted to persons who do not have proper living conditions with their families, or to those that need such placement in an institution for social care for other reasons and no other type of social care is applicable. This right may be exercised by a person with moderate and severe mental development disabilities referred to training for labour-manufacturing activity, a person with the most severe disabilities in the mental development and physical disabilities who needs permanent care and assistance. Assessment of the capacity for training for labour-manufacturing activity of children and youth with moderate and severe disabilities in the mental development is conducted by competent body governed by Regulation for assessment of specific needs of children and youth with disabilities in development7. In RM there are other Laws that regulate series of social benefits designated only for certain category of persons with disability. One of them is the Law on civilians disabled in war8, the Law on special rights of members of security forces and members of their families9, Law on right to military disabled persons and members of their families and members of families of deceased soldiers11.

6. Rulebook on compensation to salary for short-time employment due to care of child with disabilities (Official Gazette of RM no. 53/98). 7. Rulebook for regulation for professional profile of members of competent body that gives the diagnostics and opinion for assessment of specific needs, keeping records and institutions that give diagnostics and opinion (article 102, paragraph 3), enacted (Official Gazette 30/2000). 8. Law on civil disabled persons from the war (Official Gazette of SRM, number 33/76, 25/79, 11/81 and 4/85, 12/89, 17/91 and Official Gazette of Republic of Macedonia, no. 38/91 and 81/99) 9. Law on law for special rights to members of security forces and members of their families. 10. Law on right of war disabled, members of their families and members of families of deceased soldiers

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Forms of social welfare11 Monetary allowance Permanent monetary allowance Single monetary allowance Education aid Care and other services at home Third person care allowance Rehabilitation allowance Other allowances Other forms Referral to education and training Assistance in employment and foster companies Other measures of social welfare Assistance in settling of marriage and family relations Assistance in exercise of certain rights Other services of social work Allowance for part-time employment Beneficiaries of special child allowance Number of children Number of families

Number of beneficiaries with physical and mental disabilities

2. 984 968 1 622 14.336 1 83 294 4 5 21 28 214 4.467 16

6.504 6.286

Such set social welfare is in its entirety reduced exclusively to certain monetary transfers that on the other side are additionally accompanied by commissions and quacks, pursuant to the regulations of MLSP that determine whether certain right shall be granted to the citizens with disability or not. The problem in the monetary transfers would not be so bad if there was a system in place for classification of citizens with disability. On the basis of the measures foreseen in the LSW and in LEIP we can get a picture that reflects the entire derogation of the issue of disability taken to the level of incapacity and illness, as well as separation of the citizens with disability not on the grounds of their disability, but on the basis of the cause of disability and thus different rights that cover various sector interests.
PROPOSED MEASURES

There are number of inconsistencies and measures in the factual system of social welfare which, besides showing the hypocritical face of the state, lead to a fragmented system where citizens with disabilities are left on the margins of the society, entirely excluded and distant from the guaranteed social care, and the tragedy is even greater since at the same time campaigns are run for active social

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Statistical Yearbook of Republic of Macedonia, 2012

Disability - the missing puzzle piece

care, democratization and equal opportunities. The state will have to make serious changes in the Law on social welfare (LSW) if it wants to provide social security for the citizens with disability. Along these lines, it is necessary: To adopt a law for rights and dignity of persons with disabilities (Systematic law); To introduce a new method and approach to classification of persons with disability; To adopt a comprehensive policy for regulatory mechanisms for support services to persons with disabilities; Enactment of legislation for establishment of a system for referral and assessment of persons with disability; Establishment of a policy for support of parents of children with disabilities; Active involvement of persons with disability in creation and implementation of social welfare measures; Raising of the institutional and personnel capacity on the issue of disability in MLSP as well as the centres for social work on national and local level.

CONVENTION
1. States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability. 2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures: a. To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs; b. To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes; c. To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care; d. To ensure access by persons with disabilities to public housing programmes; e. To ensure equal access by persons with disabilities to retirement benefits and programmes

LINKED Public awareness; Legislation; Health protection; Services for support and indipendent living; Education; Accesability; Employment; Ligal Capacity; Deinstitutionalisation
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3.5. (De) Institutionalisation


Most of us can, as we choose, make of this world either a palace, or a prison
J. Lubok

The reform process of the social protection system in Macedonia began in the mid 1990s with the introduction of the first social service in the community a day centre for adults with intellectual disability in Kriva Palanka. However, the first true steps towards deinstitutionalisation were made in 2000 with the signing of the Memorandum for cooperation between the Ministry for labour and social policy (MLSP), UNICEF and WHO, thereby enforcing the administrative ban on the reception of new people with intellectual disability in the S.I. Demir Kapija. Since then, the MLSP has supported the development of social services that provide daily accommodation in the community for persons with intellectual disability. Up until now, a network of 29 day centres for children with intellectual disability have been opened. In 2007, within the framework of the programme for cooperation with the NGO sector, the MLSP implemented financial support for day centres for adults with intellectual disability, managed by non-governmental organisations. In 2007, the first ever National strategy for deinstitutionalisation (2008 2018)1 was prepared, which reflected the political dedication to fully implement the deinstitutionalisation process. One of the high priority targets of the Strategy is the deinstitutionalisation of the Special Office in Demir Kapija. Alongside this strategy and the Law on Social welfare (LSW)2, deinstitutionalisation is also regulated by the following regulation: Law on employment of invalid persons3, Rulebook on the criteria and allocation of single compensation from the special fund for employment and working conditions for disabled persons4, Family law5, Law on local self-governance6. In order to ensure comprehensive implementation of the reform of the social protection system, the LSP includes support services for accommodation of certain categories of users. In accordance with Article 32 from the Law for social welfare , persons whose own families cannot provide the necessary living conditions, or for other reasons require placement with a foster family, have the right to placement or accommoNational Strategy for Deinstitutionalisation Law on social protection 3. Law on employment of disabled persons 4. Rulebook on the criteria and allocation of single compensation from the special fund for emploument and working conditions for disabled 5. Family Law 6. Law on local self-governance
2. 1.

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Disability - the missing puzzle piece

dation with a foster family. Among other vulnerable groups are also the persons with moderate or severe mental disability, persons with profound mental disability and persons with permanent physical disability that require permanent care. This right which also is a form of social protection is extensively represented in the Center for social workdaily activities, especially in the placement of orphans or children that are left without parental care which at the same time suffer physical or mental disability. (In Skopje a total of 76 families provide full-time care for 126 children, of which 50% have mental disability) According to information released by the MLSP, there are 93 families that provide full-time care to 153 children between the ages of 3 and 26. Most of the children that are placed in foster care are without parental care. In these last few years, this form of protection has included a large number of disabled children. This form of care provides for and enables more adequately valorised possibilities where the foster family can enter a working contract as a guardian if the family provides care for three or more children. On the other hand, there are also conditions which pave the way for higher standards for selection of families, which should of course have a positive impact on the promotion of this type of protection. Each foster family receives a monthly sum of 12,500 denars from the MLSP for every person in its care. In order to provide financial security to foster families that after completing their function as foster families will reach a certain age, and meet the conditions for receiving a pension, and thus will have the right to claim and receive a monthly amount of 8.000 denars after the age of 62. The foster families or the foster caregiver can claim the amount after the completion of their function as a foster caregivers; after the age of 62; if the caregiver has provided foster care for at least 10 years with some periods of intermission through no fault of his own, between the age of 18 and 62 or has been a caregiver of a person within his own family continuously for 5 years before reaching the age of 62; and if the caregiver does PARADOX not claim his right to a pension on other basis. MEASURE vs. MEASURE According to implemented analysis, Imagine an average Macedonian fami ly that a total of 48 persons that have prohas a disabled child. If the child lives with vided care for children for at least the family, the state shall award the so called five years will have the right to claim care by others allowance in the amount of MKD 4 200 per month. If the child is then financial compensation in the form given to a caring family on whichever baof pension, as well as 31 persons that sis, the support extended by the state may have provided care to children for at reach as much as MKD 12 500. However, if least ten years. there is no alternative solution and the child ends up in the Special Institute in Demir KaArticle 39 of the LSP states that the pija, then the state will set for that person right to placement with support in a over MKD 25000. This defeats commons house is provided to persons that do sense!? And then, we will engage in putting not have adequate living conditions together strategies and de-institutionalization projects... with their own families, or to persons
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that do not have families as well as to persons that have been placed in social protection institutions in the country due to any one of the outlined reasons. Article 121: The institutions for social protection and social security and non-institutional care are: day centres for persons with intellectual and physical disability; Centre for providing assistance at home, Foster families; Small group homes; Article 149: Small group homes provide several types of support programmes in the community, including housing and entertainment activities and free time. The type, degree and scope of the support, as well as the persons responsible for providing that support are defined in accordance with individual and flexible plans, developed for each person (plans that are tailored to the person). A small group home can be formed as an institution for social protection as an individual organisational unit within social protection institutions or other legal entities, or as part of physical entities that are licensed to implement specific social protection activities. In a sub-legal act, the Minister of labour and social policy determines the conditions, qualifications and the number of employees that provide support in a small group home, as well as the physical conditions and the necessary equipment. In 2008, within the framework of MLSP and in cooperation with Polio Plus saw the beginning of the deinstitutionalisation process of the Special Office Demir Kapija, by forming the first services for support in the community which were aimed at the persons with intellectual disability over the age of 26 in Skopje and Negotino. This cooperation ended after the standards for providing this type of support were rejected, but also due to the inability to recognise the need to implement the system. It was then decided that this process would be managed by Message Negotino a centre for the mentally disabled, in cooperation with MLSP. At the moment, Message Negotino7 provides support for 63 users accommodated in 7 housing communities, namely 32 persons with intellectual disability in Negotino and Demir Kapija, and 31 persons in 7 communities in Skopje (Aerodrom, Kisela Voda, Volkovo and Lisice). Unfortunately, the existing deinstitutionalisation system is witness to repeated institutionalisation of the persons with disabilities. Instead of receiving individualised support, their treatment is characterised with institutional elements. Despite the promises and will for deinstitutionalisation, there are still institutions in the Republic of Macedonia that provide institutional protection for persons with intellectual (combined) or physical disability. 1. Office for protection of children and the youth in Skopje which is visited by 108 people with moderate and profound intellectual disability. A total of 55 professionals work with these persons, including: special educators, psychologists, therapists and educators. 2. The Special Institurion Demir Kapija includes a total of 357 persons with exten sive and profound intellectual disability. They are cared for by a total of 136 employees, of which most are special educators, physiotherapists and nurses. 3. Office for protection and rehabilitation Banjsko - Strumica. This institutions

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7.

Information provided by Message Negotino

Disability - the missing puzzle piece

has the capacity to accommodate 65 persons between the ages of 6 and 26, but there are also persons who are placed in this institution for various reasons and are older than 26. There are several functional departments within this Office, including: general department, sickbay for elementary and high school education, medical department, department for production and vocational qualifications and a new department with 22 apartments that can accommodate up to 88 persons. The accommodation of persons with severe and profound intellectual disability in the institutions is decided by a determined procedure which includes the parents and guardians of the persons, CSW, health institutions and the person himself to the degree to which he is capable of judgement. The decision for enforced detainment of a person in a medical institution for psychological treatment can be made only by a Court following a strictly determined procedure that provides protection of the persons rights and his guardian. In terms of the institution for accommodation of persons with moderate disability, the accommodation decision is made by the MLSP based on a proposal by CSW, and at the request of and in accordance with the parents or guardians of the person and at the request of the person himself.
PROPOSED MEASURES

Revision and amendment to the legislation and administrative rules for the implementation of the deinstitutionalisation process on local and national level: Identification and annulment of legal provisions that directly or indirectly support institutionalisation, Implementation of a coherent and compre hensive system of regulatory CONVENTION mechanisms, Assigning of persons with disability States Parties to this Convention recognize the and members of their families to repequal right of all persons with disabilities to resent the process of inclusion; live in the community, with choices equal to These support services should develothers, and shall take effective and appropriate measures to facilitate full enjoyment by perop capacities in the future to support sons with disabilities of this right and their full persons with disabilities in decisioninclusion and participation in the community, making processes (legal cases pertainincluding by ensuring that: persons with dising to their ownership). abilities have the opportunity to choose their
place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

LINKED Legislation; Helth protection; Services for support; Education; Accesability; Social welfare; Employment;

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3.6. ACCESSIBILITY / AVAILABILITY


Last night, I wanted to visit you...
Lyrics from a Macedonian folk song

The accessibility and availability includes providing equal access to public buildings and services in the community for persons with disability. The concept of accessibility is based on the idea to create space for everyday life, free of unbridgeable obstacles for some users, which for us is relatively new concept. In fact, even though various levels of local and central government have declared their dedication to changing these circumstances, it is undeniable that the authorities display an obvious lack of awareness. The formula for inclusion is straightforward. Inclusion (I) of persons with disability (d) will be achieved (=) only when all things are accessible (A), available (A), which can also be affordable (A). And all this based on quality (Q) and choice (C). It is straightforward but difficult to achieve. In Macedonian legislation, the right to accessibility for persons with disabilities is regulated by the Law on construction (Article 10)1 which projects for deviation from the basic requirements for construction, for reconstruction and adaptation for persons with disabilities in order to enable them unrestricted access, movement, stay and work. Article 11 outlines that the state indicates that all public and office buildings should be constructed so that persons with disability can have unrestricted access to them. Another significant provision is Article 11, paragraph 2, which states that when constructing a block of flats, for every 10 flats there must be at least one built for persons with disability. Unfortunately, this provision simply disappeared from the edited text of the Law. All the details surrounding the unrestricted access, the standards projected for in the Convention for the rights of persons with disbaility (CRPD), with the exception of the provisions for emergency cases and accidents from the CRPD, are specifically regulated by the Rulebook2 on the manner of providing unrestricted
1.

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2.

Law on construction, Official Gazette of RM No. 51/05/2005 Rulebook on the norms and standards for housing in apartment buildings (Official Gazette of RM no. 27/10

Disability - the missing puzzle piece

Diagram no.8 How is your perception about the architectural barriers in youre environment?

access, movement and employment of persons with disability to and in the building. NEW BUSES In 2011, the Government planned to purchase The shortcomings of this legal solunew buses for the Public Transport Company. tion can be found in the measures But it was not a surprise to see that the new and mechanisms of their implebuses were not accessible for disabled persons. However, luckily after the tender was mentation, but mostly in the varicancelled and after some pressure from assoous interpretations of the provisions ciations and experts, new busses were ordered from Article 10, which in practice that were fully accessible for disabled persons. it poses a problem. The situation in institutions in Macedonia3, in this context is worrying. One can rarely see institutions that have access points for persons with disbailities. And those that have an access point have forgotten that entry slopes are not meant to be used as ramps. The situation is worse when it comes to other accessibility standards to lifts for example, which are wide enough for a PARADOX wheelchair to fit it, then public toilets, lowered window desks which would Line Ministry of labour and social polenable persons with disability to access icy located on the 4th and 5th floors has the building and make their stay there enabled access only up to the staircase more efficient. of the building, and a lift which does not In 2001, based on the Law on spatial meet the standards for an average number of persons with disability. Other minisand urban planning, two sub-legal acts tries can be included here which have no were passed which address issues reaccess at all for persons with disabilities, garding accessibility and the manner in such as the Ministry of interior affairs, which the norms in this area should be Ministry of health, Ministry of culture, formulated for certain buildings so that etc. CASE
4.

Publication Accessibility, research 2006, Polio Plus

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they can be used by persons with PARADOX disabilities; the Rulebook for the standards and norms for spatial planWELCOME ning and the Rulebook for projection In this sense, a case registered in 2009 is eviof buildings. dence that discrimination is still evident in this region. A lady with disability of dual nationalThe amendments to this Law were ity Macedonian and Dutch, after disembarkproposed by IPPG and more imporing off the plane, did not receive a wheelchair tantly, many of these amendments from airport officials so that she can complete the necessary procedures to enter the country. were accepted. The officials separated the lady from her perHowever, the provisions for penalsonal assistant, and subsequently came to realise ties, which projected for more rigthat they had lost her wheelchair without which orous sanctions for violations of the she is unable to move. The lady was carried by an airport official in his arms so that she could existing rulebooks that addressed the go through passport control. She now plans to standards and norms (construction of take her case to court because she feels that she 4 ramps, car parks etc.) were rejected . was a victim of discrimination at one of the The public buildings that have alcountrys airports. ready been constructed, largely do not meet the standards in the Law on construction. Despite the fact that the Law (Article 170) projects for the already existing public and office buildings to additionally build access stairs to their entry points by the end of 2011, this provision sadly remained in its written format. Progress was made by the fact that the Ministry of economy in 2012 announced an action to regulate the standards and amendment to the Rulebook for categorisation of catering facilities. The right to accessibility and availability is regulated through the Law on prevention and protection from discrimination5 (Article 5). The accessibility and availability to buildings for persons with disabilities is set as the basis for discrimination. But the irony is the offices of the Commission for protection from discrimination are completely inaccessible and unavailable for persons with disbailities. The gloomy side of this legal corpus is the fact that the new buildings do not implement the provisions of this Law, leaving the old and new buildings which are of public interest completely inaccessible for persons with disbailities (universities, schools, hotels, health institutions). The rights to accessibility and availability to apartment buildings are regulated by the Housing Law6. The special housing norms and standards in apartment buildings are regulated by the Rulebook7 on norms and standards for housing in apartment buildings, passed by the Minister for transport and communication.
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Collection of Macedonian regulations for disabled persons, page 286 Law on prevention and protection from discrimination Official Gazette of RM 2010 6 . Housing Law Official Gazette of RM 7. Rulebook on the norms and standards for housing in apartment buildings (Official Gazette no. 27/10)

Disability - the missing puzzle piece

The Law regulates the obligation for the director of the apartment building to be familiar with and know the standards and norms for accessibility of persons with disabilities to the apartment building. Not only are the owners obligated to adhere to these norms and standards, but these are also related to the temporary or permanent use of apartment and office space located in apartment buildings as well as people who temporarily visit the apartment building. Even though the Legislators intentions were good, the Rulebook still does not managers to learn and familiarise themselves with with the norms and standards for accessibility and availability of persons with disbailities. The right to accessibility and availability is regulated by the Law on self governance (Article 22)8. Recently, an upward trend has been noted in terms of local communities

CASE
JORDANOSKI vs. THE CAR TOW SERVICES In November 2005, the Assembly of the Republic of Macedonia became completely accessible for persons with disabilities. A month later, the Assembly Speaker Ljupco Jordanovski had noticed that one of the official state vehicles was parked in the Assembly car park in a place designated for disabled persons. Mr. Jordanovski immediately called upon the citys car tow service to remove the vehicle, but the tow vehicle could not manoeuvre through the narrow slope of the internal exit door. Mr. Jordanovski then ordered the negligent driver to move his vehicle to the outside car park in a place that is not designated for a person with disabilities so that the car tow vehicle can remove the illegally parked car. The negligent driver then paid his penalty for illegal parking, the service provided by the car tow vehicle and also penalty on his salary. This case was published on the front page in the daily newspaper Dnevnik. The next day, Mr. Jordanovski received a letter of gratitude signed by some 30 persons with disabilities. The principles of the Assembly Speaker were the reason for available parking spaces for disabled persons, but that was short lived because unfortunately we can see how these spaces are occupied on daily basis by negligent politicians and officials.

statement
A parent of a child with disability in Skopje has submitted a request for installing a lift in the building where they live. When reviewing the Rulebook we found various interpretations in it and by the competent institutions of the Law and the Rulebook regarding the meaning of deviation from the basic construction requirements. This led to a situation where the request made by the parent is left unanswered to this very day. There are different interpretations of this Article made by the Ministry and the Municipality, which means that even though funding for the lift was provided, the device is still uninstalled. Parent of a child with disability
8.

taking action regarding this issue. In order to execute the legal provisions, it is necessary to implement adequate communication channels on local and national level. The local self-governance has to strengthen the mechanisms for implementation of urban planning, particularly emphasising the issuing of licenses which, in accordance with the Law on construction, have to be available and accessible for persons with disabilities.

Law on local self-governance, Official Gazette No. 07/2002

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The right to accessibility also pertains to various forms of transport, including air, rail, bus and taxi services, and The Ministry of Transport and communiits vital for the independence of percations, in conjunction with Polio Plus, insons with disabilities. cluded the Universal Design Principles in the work of the Steering Committee responThe right to parking places for persible for renovation of the Railway Station in sons with disbailities is regulated by Skopje and other in the country. By the end of 2012 -2015 we will have a fathe Law on traffic safety9. cility that will accommodate in full the needs This law defines the number of parkof citizens with disabilities. Mr. Darko Spirkoski ing places that should be clearly from the Ministry of Transport marked in public car parks from 3% and communications to 5% of the total number of parking places in a single car park should be marked and allocated for persons with disbailities. The standards for parking places for persons with disbailities are defined by the Rulebook on the manner of providing unrestricted access, movement, stay and employment of persons with disbailities to and in the building. The negative aspect in practice is the fact that parking places allocated for persons with disbailities remain unmarked, which of course should be clearly marked in accordance with the standards, and the unregulated marking of vehicles operated by persons with disbailities. It should be mentioned that, in accordance with the Law on public roads (Article 96), persons with disbailities are exempt from paying the pay toll fee. With the amendments to the Law on road transport from 2010, the carrier and the bus stop are obligated to issue a return ticket free of charge to a blind person with 90% impaired vision and his personal assistant who carry a confirmation for membership and stamp in the travel card issued by the Association of the blind as proof that the blind person has made the trip. A blind person with 90% impaired vision and his companion can be issued no more than six return tickets free of charge in one calendar year for trips in the internal passenger transport. The cost of the return ticket is borne by the carrier. The privileges described above lead to direct discrimination, which includes only part of the population that have this specific type of disability. The right to privileged transport should include all the citizens that have a disability and their personal assistants. At the same time, these rights should not in any circumstance be connected to membership in a certain association, as is the case in Macedonia, which is also direct discrimination and against the Constitution. This practice is also used for issuing free parking tickets.

statement

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Law on traffic safety (Official Gazette of RM No. 14/98, 38/2002, 38/2004, Article 20, Article 69, Article 247, Article 399, Article 400, Article 406)

Disability - the missing puzzle piece

Reasonable accomodation CONVENTION In this context, it is important to outline the term reasonable accoStates Parties shall take appropriate measures modation. The term reasonable to ensure to persons with disabilities access, on adjustment was first mentioned in an equal basis with others, to the physical environment, to transportation, to information and the Law on prevention and proteccommunications, including information and tion from discrimination. But the communications technologies and systems, and definition as it is in the Law only to other facilities and services open or provided to the public. indicates to circumstances in emStates Parties shall also take appropriate measployment and working relations. ures to: develop, promulgate and monitor the However, the meaning of the term implementation of minimum standards and guidelines for the accessibility of facilities and reasonable adjustment has a much services open or provided to the public; provide wider scope and includes several training for stakeholders on accessibility isareas which, if no measures are unsues facing persons with disabilities; provide in dertaken, can lead to both direct and buildings and other facilities open to the public signage in Braille and in easy to read and underindirect discrimination. stand forms; provide forms of live assistance and Reasonable accomodation is a intermediaries, including guides, readers and task to adjust; reasonable adjustprofessional sign language interpreters, to facilitate accessibility to buildings and other facilities ment, adaptation or measures, or efopen to the public; promote access for persons fective and adequate modifications. with disabilities to new information and commuIf the requested adjustment causes nications technologies and systems, including the Internet. unexpected complications for the person or the subject who is expected to provide the adjustment, then it will not be classified as discrimination.
PROPOSED MEASURES

It is necessary to amend legal provisions, including the implementation of standards and strengthening of penalty mechanisms within the legal network. The Assembly should pass an authentic interpretation of the provisions for accessibility in the Law on construction; To pass Instructions for standards for assessment of reasonable adjustment. Here we have to mention the Construction Inspectorate that obviously is failing to enforce the modest legal provisions in this area; To provide training for the State Inspectorate personnel; To provide continuous monitoring system for implementation of accessibility standards; To implement training for air and land transport carriers concerning disabilities.
LINKED Education; Services for support; Public Awareness; Universal Design; Informatic technology; Legislation; Employment; Non discrimination; Deinstitutionalisation; Medium;

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3.7. Justice And Judicial System


Any society that would give up a little liberty to gain a little security will deserve neither and lose both.

B. Franklin

All the laws in Macedonia which regulate the most important court procedures, such as the Law on criminal procedure, Law on civil procedure, Law on nonprocedure, contain special provisions which enable efficient participation by persons with disabilities in the courts or to undertake other measures to protect their rights. These provisions mainly regulate the same areas and are not projected only by one law, which leaves room for inconsistencies and incomplete regulation of this problem. In accordance with the Law on criminal procedure1, when a person with impaired hearing is indicted, he will need an attorney present at the first hearing. In accordance with the same law, when the respondent has hearing or speech impediment, the communication in the court is conducted in a manner which allows the person to defend himself successfully. In these circumstances, questions can be posed in a written form (if the respondent has a hearing impediment) and also enable the respondent to write the answers to the questions on paper (if the respondent has a speech impediment). If its deemed as necessary, the court can provide an interpreter. The same principles will be applied in circumstances when the person with disabilities is called upon by the court as a witness. Within this law, the persons with intellectual disability have a special protection, in circumstances when the respondent is deemed as mildly or uncalculating. If there is any doubt as to the latter, and due to a mental illness, mental disorder or delayed mental development, the court is obligated to order expert evidence for the respondent. The expert evidence should determine the type, degree, duration of the mental illness and the impact of the condition on the respondents ability to understand the circumstances and procedures. These provisions should protect the interests of respondents that have mental disability because this type of disability has a direct impact on the criminal responsibility of perpetrators. The Law on civil procedure (LCP)2 projects for special provisions for representation in cases where the clients inability is determined in the procedure. This is quite significant because generally the persons that have a combination of disabilities (and who have been deprived or have limited legal capacity), will need legal representation in civil procedures.
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2.

Law on criminal procedure, Official Gazette of RM No. 150 od 18.11.2010 Article 74 Law on civil procedure, Official Gazette of RM No.79/2005

Disability - the missing puzzle piece

In accordance with the Law for social welfare, the person that does not have civil capacity will be repVERDICT in absence resented by his legal representative, assigned by the law or by act A person with disability from Veles had reby the competent authority. quested that his hearing be moved to a room on According to this legal solution for the ground floor in the building. The request was rejected. example, children whose parental The person had twice climbed the stairs to rights have been extended even afreach the second floor where the hearing was ter adulthood due to some form of scheduled to take place, because the other party disability, in civil procedures will was not present. be represented by their parents as After the third time, the disabled person did not legal representatives. attend the hearing because of illness, and the The Law on general administraverdict was passed in his absence. tive procedure3 projects for provisions similar to those of Law for social welfare and is related to representation during the procedure. The Law on non-procedure4 includes significant provisions that enable a person with hearing or speech disability to make a court testimony. When compiling this testimony, the Law takes into consideration the sensory disability of these persons and provides for special provisions through which the procedure for court testimony can be adjusted. Therefore, when making the testimony, and during the reading of the testimony, the Law instructs the presence of an interpreter if the respondent is a person with hearing or speech disability. The Law on free legal aid5 also contains provisions that ensure an efficient access to justice. The objective of this Law is to ensure that a certain category of citizens have an equal access to justice and its institutions. The fundamental criterion for free legal aid is the financial circumstances of individuals. Aside from the direct or indirect participation in legal procedures, the Macedonian legislation allows persons with disability to have primary functions within justice institutions, functions such as judges, attorneys and lay judges, naturally if their wellbeing is generally good6. The Law on juvenile justice7 projects for special rules on procedures for children and adolescents who have developmental disabilities children and adolescents at risk. In accordance with the Law, this category of persons disabilities cannot be subjected to punishment; instead, there are measures for assistance and protection, passed by an expert team from the competent social protection centre (including a teacher, social worker, psychologist and lawyer), subsequent to collection of data and interview with the adolescent at risk and members of his family. PARADOX
Law on general administrative procedure, Official Gazette of RM No. 38/2005 Law on non-procedure Law on free legal aid Official Gazette of RM No.130/2009, dated 28.10.2009 6. Law on courts, Official Gazette of RM No.58/2006 dated 11.05.2006, Article 43(1). 7. Law on juvenile justice, Official Gazette of RM No.87/2007 dated 12.07.2007, article 12
3. 4. 5.

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PROPOSED MEASURES

CASE

In terms of these issues, MacedoPolice service nia cannot really boast that it has to the citizens In 2006, Polio Plus organised training for pomade effort and progress in providlice officers regarding the issue of disability ing access to the institutions of jusand training in sign language. The training sestice for persons with disability. The sion was attended by 15 police officers. situation within these institutions in Macedonia (courts, prosecution offices, ombudsman, the relevant faculties, ministries, municipalities, other state organs and public companies) is far from favourable. These institutions do not have properly trained and educated personnel in terms of disability, which can pose a discriminatory obstacle when it comes to effectively using the resources of these institutions and thus ensuring that justice is done. Frequently in practice, there are cases when the disabled persons know their rights and the manner in which they can exercise them more than their legal representatives. The legislation which is responsible for this issue is disorganised and inconsistent in several acts, especially those that regulate the court procedures in Macedonia. This isnt an obstacle but in situations like these, the scattered pieces CONVENTION of the law have to be collected and harStates Parties shall ensure effective acmonised. cess to justice for persons with disabiliIn addition, to enable a more efficient ties on an equal basis with others, includaccess to justice, the judicial institutions ing through the provision of procedural must have the trained personnel that will and age-appropriate accommodations, in deal with disability issues. order to facilitate their effective role as Of course, we have to mention here the direct and indirect participants, including as witnesses, in all legal proceedings, physical accessibility and availability of including at investigative and other prethe above mentioned institutions.
LINKED Education; Accesability; Services for support and indipendent living; Public awareness; Legal Capacity; Employment; Legislation; Deinstitutionalisation; Social welfare; Non discrimination
liminary stages. In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff.

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3.8. (Non) Discrimination


Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world
Elenor Rooselvet

The principles of equality and the ban on discrimination do not mean only equal actions in similar situations, but also various actions in unequal situations, thereby emphasising the entre anti-discriminatory legislation, not only in terms of equal opportunity, but also in terms of equality of the end result itself. In modern daily life, discrimination is a concept which doesnt have fixed and rigid borders, and should be analysed as such. The latter is ever so true for discrimination based on disability, because the root disability is a developmental concept in its own nature, and whats more, the way in which this form of discrimination is manifested is also changeable. The development of the theory that disability should be regarded as a human right, led to a new tendency, not only in national legal systems, but also on international level that there should be a clear and unequivocal ban on discrimination based on disability. This is reflected in the international legal instrument for human rights the Convention on the rights of persons with disabilities (CRPD) as well as in the EU Directive for establishing a general framework for equal treatment in employment and occupation (Directive 2000/78/EC). It should be outlined that every differentiation based on disability in the legislation and in practice does not per se represent discrimination. This is where the challenge is, to draw the borders between discriminatory actions and differentiation which is not discrimination, in other words, unfavourable actions that can be justified. However, the basic premise which is the starting point in anti-discriminatory legalisation is that disability (as a personal characteristic) itself cannot be taken as the only indicator to the physical, mental and social capabilities of the individual. Today, disability based discrimination is a phenomenon that appears in every corner of society, and countries undertake drastic measures to deal with this type of discrimination. Research shows that a staggering 33,5% of the Macedonian population believe that they have been victims to discrimination or agitation in the last 12 months.
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Diagram no.9 The preception on the ground of disability in RM

The perception of disability based discrimination is quite high; 45% of the research participants believe that this form of disability can frequently be seen in our society. If we add this data to the percentage of people that believe various forms of discrimination can frequently be detected in our society (51%), and a total percentage of 55,6% of research participants that, if they find themselves a victim of discrimination1 would not know how to act because they do not know their rights2, then we truly have a gloomy and worrying situation. In terms of the legislation, in the last several years Macedonia has developed an anti-discriminatory framework, which can be used as a relatively solid foundation based on which the future judicial practice can be built. In Article 9 of the Constitution of the Republic of Macedonia there is an equality clause which excludes disability as discrimination, which has been criticised for numerous reasons. Whats more, in addition to the criticism, the Constitutional Court has for a long time interpreted this clause quite restrictively, and this precisely brings into question the efficiency of this procedure for protection. This is why the national legislation, with the enforcement of several laws, has begun to unequivocally ban discrimination in general, and here, the laws pertaining to employment are especially significant. This led to the enforcement of the Law on prevention and protection from discrimination in 20103. This and the other laws previously mentioned unambiguously ban all forms of discrimination, including direct, indirect, harassment, adequate adjustment, as well as
See: V.Petrovska Beska, M.Najcevska, Research report: Barometer for equal opportunities, Macedonian Centre for International Cooperation, 2009 available at: http://www.mcms.org.mk. This publication is part of the publication Discrimination in the European Union: Perceptions, Experiences and Attitudes, Special Eurobarometer 296, European Commission, 2008 available at: http://ec.europa.eu/public_opinion/archives/ebs/ebs_296_en.pdf. 2. See: E.Simoska, N.Gaber, A.Jovevska, P.Atanasov, K.Babunski, Research poject: To what extent is Macedonian society inclusive Open Society Institute- macedonia, 2008 available at: http://www.soros.org.mk 3. See: Law on prevention and protection from discrimination, Official Gazette of RM No.50/2010, dated 13.04.2010 godina, available at: http://www.mtsp.gov.mk i http://www.slvesnik.com.mk.
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Disability - the missing puzzle piece

instructions for discrimination made by physical and legal entities in public and private sectors in employment and working relations, education, access to goods and services, housing, health, social protection, management, judicial services, science, sport, membership and taking part in trade unions, political parties and organisations and other fields. The author believes that protection from disability based discrimination is slowly but surely taking its rightful place in the Macedonian community, even though there is still some way to go. Unfortunately, the lack of judicial and quasi judicial practice4 is a significant obstacle in the elaboration of the role of these judicial institutions, projected for by the anti-discriminatory legislation.
proposed measures

PARADOX
BApples and Oranges The issue of discrimination is new in our legal system. Each novelty bligns along coubts. We seem to get confused about the terminology, the legal basis and the object of protection as in the popular comparison of apples and oranges. Therefore: Beating up of an individual to prevent him/her to get into a bar is not discrimination it is a crime. Setting churches and mosques on fire is also a crime. Discrimination means unequal treatment of individuals in equivalent situations as specified by the law, which defines the above as the basis for discrimination. However, the examples mentioned above show that in practice this is far from easy. It is a fact that experts, and people (discriminated and discriminating) ought to gain an understanding of the concept of non-discrimination and equal opportunities.

Creating judicial practice in anti-discriminatory cases; Moving forward in terms of: Defining disability and/or the target protected group (persons with disability) in the legislation for protection against discrimination; ensuring the legal institute has workload and that it adequately adjusted to create and develop judicial practice; Individualising the criterion for general capacity in terms of health and wellbeing as one of the conditions for employ-

STATEMENT
Not everything is discrimination !!! If in a given situation, and with regards to the same rights, in my capacity of a boss in a company I treat on the same legal basis person A in a favourable fashion, while I fail to do so in the case of person B and even maltreat him then we are talking about discrimination. But if I socialize with A, eat out in restaurants, we visit each other in our homes, while I dont like B and do not want to socialize with him then it is a case of preferences, companionship and friendly relations. And that has nothing to do with discrimination.
Discussion: Zvonko to Elena editor of the publication

4. In accordance with the national legislation, there are two quasi judicial protection mechanisms which the population can go to when their rights have been violated due to discrimination: the Commission for protection against discrimination and the Ombudsman. In 2011 of the total number complaints by citizens submitted to the Ombudsman, only 0,99% were related to cases of discrimination, and none pertaining to disability based discrimination. On the other hand, in 2011 the Commission for protection from discrimination received a total of 61 cases, of which only three were related to disability based discrimination.

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ment, especially for persons with disability; Providing a systemised and complete approach to exercising the right to education of persons with disability without discrimination and on equal basis with other segments of the legislation pertaining to education; Ensuring and guaranteeing accessibility to buildings, environment, public transport and information and communication systems as well as availability of public resources for persons with disability; Overcoming numerous prejudices towards disabled persons, especially about their quality of life and lifestyle;

CONVENTION
1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law. 2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds. 3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided. 4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.

Intensifying and sustainability of the deinstitutionalisation process, etc. Implementing a transparent and inclusive process for assigning, implementation and efficient national monitoring mechanism in accordance with Article 33 from the Convention; in addition to the latter, in order to ensure inclusive and efficient participation of disabled persons and their representative organisations, the country must create a continuous process which will not depend on ad hoc consultative methods. This can be achieved only through joint efforts and active contribution by all the parties, governmental and non-governmental.
LINKED Education; Accesability; Services for support and indipendent living; Public awareness; Legal Capacity; Justice; Employment; Legislation; Deinstitutionalisation; Social welfare;

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3.9. Family Life


Family is the fundamental unit of society
Fridrih Engels

A family is a unit composed of parents and children and other extended family, if they live in a common household. In accordance with the Constitution1, the country provides special protection for families, mothers, children, adolescents, children without parents and children without parental care, and at the same time provides protection for marriages and family from deteriorating relations and violence within the marriage and family (Article 41). This constitutional provision as such fails to include children and persons with disability. The Law on family completely regulates the legal aspects of family as well as other relationships pertaining to it. In Macedonia, there are other laws that represent additional normative and legal sources for family law. These are the Parents Records Law, Law on personal name, Inheritance Law, Law on civil procedure, Law on non-procedure, Law on courts. In Macedonia, the right to form a family is regulated with the Family Law2 in which it is stated that two people of different gender can enter into having expressed their free will to enter the marriage before the competent organ. Even though the persons with disabilities are not strictly mentioned as such, it still means that they enjoy equal rights as other citizens when it comes to entering a marriage. But in terms of this provision, stated in Article 18, the legislator has limited the provision from Article 15 regarding the persons that have moderate mental disability or have mild mental disability, as well as persons that have severe hereditary diseases, can enter a marriage only if they have a written opinion on the genetic construction issued by the Office for Mental Health of Children and Youth Skopje or other competent institutions which handles genetic research. As is the case in other areas, the legislator in accordance with defectoly decode system, places the persons with intellectual disability on hold, until he receives evidence that the kids will have a good marriage. Here the legislator seems to have forgotten that the persons with disability are equal citizens like everybody else, and no one can guarantee that the people that dont have disability would have better marriages and would make better parents. In this sense, we have to ask the question whether a child, in the name of the rights that a person has to family and private life, can be put on hold?
1. 2.

Constitution of RM, article 40 Family Law 2012, www.mtsp.gov.mk

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On the other hand, the structure as such presents general limitations which are contrary to the essence of the human rights concept, and according to which, a human being can never be a means to fulfil the needs and rights of others, let alone be put on hold. The legislator has provided some modest benefits for biological families of children with disabilities, as well as other social services which can support the functionality of the family, which, according to the MLSP aim to help the families that are facing difficult situations to overcome the risk of having their child removed from the biological family unit. In cases when the living arrangements and environment of the person (with mental and physical disability) are difficult, then in accordance with the Law for social welfare, that person has the right to be placed in an institution (Article 43), as well as the right to live in a small group home, the right to daily care in a day centre (Article 31), the right to care in a foster family (Article 32). At the same time, the right to select the use of certain benefits or the right to accommodation and visits to some institutions are in the hands on Center for social work and the Commission for categorisation of persons with disability, which using its expert special education opinion, assesses the children with disability. In accordance with Article 18 from the Rulebook, the parent or guardian participates in the determination of the findings and opinions and the determination of the specific needs of the person with mental and physical disability. Aside from the modest institutional package for accommodation and support which can be used by parents of children with disability, the Law on social protection provides for some financial benefits: The right to special benefit for a child with physical or mental disability or combined disability that has specific needs, can receive a special benefit until the age of 26, in accordance with the Law of child protection. The amount of the special benefit is 4.346 denars. In practice, there are still cases where the right to this benefit has not been exercised because of lack of information; far worse is the fact that the disabled children have lost valuable time to develop, coexist and rehabilitate because of the lack of information. Moreover, the fact that a family memPARADOX ber is a person with disability calls for a more adequate organisation of Mother and stepmother new forms of services. Experience has Care time invested by foster families (that showed us that it is necessary to have have adopted a child with disability) is expert assistance during the developcounted as years of service towards their retirement. ment of a rational relationship of all There is a simple recipe which can solve family members towards the disabled this grave injustice: families can reexperson in order to help him in his efchange children with disability (at least legally, and in reality, they can spend as forts to start a family. much time together as they want). There are frequent misunderstandings, accusations, self-accusations, heated
Disability - the missing puzzle piece

conflicts, dysfunctional family units and maybe even separation or deterioration of the family unit. However, this is not the way to solve the problems with persons with disabilities, because most of the time this leads to more complex situation, and more often than not, other family members fall victims to these acrimonious family relations, usually the child of disability who in the end ends up in a institution.
proposed measures

CONVENTION
States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others. States Parties shall ensure the rights and responsibilities of persons with disabilities, with regard to guardianship, warship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families. States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents. States Parties shall, where the immediate family is unable to care for a child with disabilities, undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting.

It is necessary to introduce new programmes to maintain the family relations, in order to allow families that have a disabled child to be able to claim their benefits. A very important component is to enable specific and tailor made services to help families with housing issues, and allow them to have financial and health benefits, flexible funding to the procurement of the necessary goods and services, and decreasing or removing the obstacles to the utilisation of the services. The introduction of services for maintaining the family unit should be accompanied with the development of standards for the services. Implementation of campaigns to raise the public awareness regarding the issue of disability; Undertaking specific measures to raise the self-confidence of disabled persons.
LINKED

Education; Accesability; Services for support and indipendent living; Public awareness; Legal Capacity; Justice; Employment; Legislation; Deinstitutionalisation; Social welfare;
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3.10. Culture
I see the world only as a field of cultural competition among peoples
Goce Delcev

Culture is the stamp, the unique collection of individual characteristics, resources, capabilities and approaches that makes one country different from another. The culture of a country can be the main pillar which improves the living standards of the citizens. Each person has a characteristic or ability that can contribute to the cultural development of his city. These include variety, ideas by the community that can make the place stand out and differ from other places, making it comfortable to live in, work in and visit. Culture it its widest sense is understood as a way of life and everyone has the right to be part of cultural events. The right to cultural activities and accessibility to the relevant building and institutions is regulated by the Law on culture1 where Article 4 paragraph 1 states: Every person has the right, independent of age, education, religious, ethnic or other background, to create freely, professionally or amateurishly, as well as the right to education in the field of culture. Article 8 talks about the national interest in culture, where paragraph 4 states that: Ensuring there are conditions of accessibility for the citizens to buildings that are of cultural value and their general use. Even though the issue of availability and accessibility to cultural buildings for every citizen is regulated by this Law, this provision is not consistently adhered to. Because the issue of accessibility has only partially been resolved, it seems as if there is no room for disabled persons in the cultural life in Macedonia. They cannot visit cultural events, or enjoy the right to participate and learn about culture, or the possibility to advance in the field. Most of the buildings and cultural institutions do not have wheelchair access, and the buildings that do have them, they are usually badly constructed and unusable. Nonetheless, even the wheelchair access is not a sufficient criterion for an institution to declare that it has access for disabled persons. Despite the fact that the Law on museums2 declares that museums are completely open to the public and have an educational role (Article 3, paragraph 3), practical experience has shown us that the Law itself along with the institutions seem to have forgotten about person with disbailities.
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92

2.

Law on culture (Official Gazette of RM No..31/98, 49/03, 82/2005, 24/2007, 116/2010, 47/2011 and 51/2011) Law on museums Official Gazette of RM No..66/2004, 89/2008, 116/2010 and 51/2011

Disability - the missing puzzle piece

The persons with impaired vision CASE have also encountered with a series In 2003 -2005 Polio Plus formed the of problems in terms of accessing cerVolcano award to support the creative entain cultural institutions. deavors of disabled persons in literature, arts For them, the lack of adaptability of and sciences, and a prize for contribution in libraries funds poses a huge problem. promoting and affirming persons with disabilities. Its practically impossible for blind people to access information and learning, because libraries still do not have books with the Braille alphabet, nor do they have audio versions of the books in their library. Some municipalities have passed Strategies for local cultural development for the period 2009-2014. These include actions and measures that will be made by the municipalities in the field of culture, including: infrastructure and technical capacity, raising human capacity, promoting and advancing the already existing cultural activities, and introducing and developing new cultural activities, in terms of branding the city, actively including the youth in cultural rejuvenation and development of a local economy through consumer goods in culture. Unfortunately these strategic documents do not address the issue of disabled persons, unclear whether that is on purpose or not. Considering that all eyes are on the discoveries of new archaeological sites which are cultural heritage and considering that a lot of money was spent so that these sites can be brought closer to ordinary citizens, it is unfortunate how those efforts avoided the person with disbailities. In Macedonia, there are no tourism and leisure programmes for person with disbailities. These segments are still in the hands of the existing social and educational institutions and the organisations for person with disbailities. Certain organisations from the so-called National Association of Invalid Persons3, have their own hotels and leisure centres, financially supported by the Government of the Republic of Macedonia and they organise leisure activities for their members, such as the famous competitions in eating cake and beans. The Association of the blind has its own artistic organisation Biljana which nurtures the musical and folklore traditions of the country and regularly orPARADOX ganise cultural events. AH, AWARDS, AWARDS ... The Association of deaf people stimuIn 2002, AIOM (now NCIOM) introduced lates the cultural creativity of its meman award December 3. bers by organising dance groups and Awards were given then (and never again) other types of creative activities. The with the Aliance awarding its own memAssociation of the physically invalid bers (six unions six awards ) and another given to the Prime Ministers persons (STILM), currently known as wife?! Mobility includes the cultural group
3.

Report on invalid persons in Macedonia, 2007

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Feniks from Bitola, whose members organise cultural nights with musical performances and poetry reading by its members, quizzes, essay competitions and other events. The Centre for support for persons with intellectual disability Message, Negotino and other organisations for persons with disability frequently organise various activities to promote the cultural creativity of disabled persons, including: workshops, art exhibitions, handicrafts, musical dance performances etc. The issue of accessibility and inclusion of persons with disability in the field of culture is one of the most important challenges that have to be addressed by the municipalities and the country in the future.
proposed measures

In Macedonia, it is necessary to undertake measures to remove all the factors of limitation (access etc.) to allow persons with disabilities to participate in cultural and activities aimed at tourists. At the same time, initiatives are necessary to introduce accessible tourism in order to allow the citizens with disability when visiting a foreign country to be able to visit all the tourist spots. To introduce programmes that will stimulate and evaluate the creativity and results achieved by persons with disabilities. Adjust the materials for cultural events and make them available in every format. To develop programmes for promotion and motivation for citizens with disabilities to actively participate in cultural events.
LINKED Education; Accesability; Services for support; Public awareness; Legislation; Informatic society

convention
States Parties recognize the right of persons with disabilities to take part on an equal basis with others in cultural life, and shall take all appropriate measures to ensure that persons with disabilities: enjoy access to cultural materials in accessible formats; enjoy access to television programmes, films, theatre and other cultural activities, in accessible formats; enjoy access to places for cultural performances or services, such as theatres, museums, cinemas, libraries and tourism services, and, as far as possible, enjoy access to monuments and sites of national cultural importance. States Parties shall take appropriate measures to enable persons with disabilities to have the opportunity to develop and utilize their creative, artistic and intellectual potential, not only for their own benefit, but also for the enrichment of society. States Parties shall take all appropriate steps, to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials. Persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture.

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3.11. Sport
In a healthy body, a healthy spirit
Latin proverb

Sport affects the quality of every mans life, but has even greater significance if it is an integral part of the life of people with disabilities. Today there are many professional athletes with disabilities who represent Macedonia throughout the world. In RM sport associations are registered and act according to the example of the sports organization of people with disabilities on international level, as follows: Association for sports and relaxation of the disabled in Macedonia, Sports Association of deaf in Macedonia and Special Olympics of Macedonia. Following the new trends from 2010, one new association of persons with disabilities was registered under the name Spin Stiga. The same categories are foreseen for the athletes with disabilities (with physical impairment, and impaired vision and hearing) within the Regulation for classification of athletes in Macedonia. The Sports Law barely covers persons with disabilities. Therefore, we believe that certain articles of this law should be amended and altered. As an example, article 10 stipulates that a sports club shall perform sporting activities if the following conditions are met: adequate facilities, secured relevant equipment, hired appropriate professional staff and participation in organized system of competitions, i.e. sports-recreational activities. Adequate facilities in terms of paragraph 1, item 1 of this article are facilities defined in article 61 from this law, which states that sporting facilities in terms of this law, are arranged areas and buildings which serve for performance of sporting activities. The problem that arises here is in that physical accessibility to the sports facilities for the sportsmen as well as the visitors with disability is not taken as a condition in this law. We also believe that there is a need PARADOX to supplement one of the items in Para recognition article 14 which states that national Macedonian basketball team won the sports federation is established for fourth place at the Euro Basket championthe purpose of: initiation and promoship and they were given a ride under the tion of relevant sports; realization of Arc of Triumph. a planned program for sports developOlivera Nikolovska won the gold medal and broke the world record at the para ment; compliance and coordination of olympics. But she was never given a ride program activities of the associated under the arc. members; organization and impleBaseline rewiev of the situation of people with disabilities in Macedonia (2012)

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mentation of the system of competitions; promotion of professional work. In the section of the Law called public interest in sports, article 22 says that public interest in sports in terms of this law is: Initiation of sporting activities of children and youth under the umbrella of national sports federations. Article 62 deals with design and construction of sporting facilities and in addition to the application of standards, technical norms, urban and other prescribed conditions, special conditions are applied as well, which refer to functionality, equipping and security of such facilities. The person in charge of the state government body competent for the sports matters, in conjunction with the person in charge of the state administration body competent for the matters in the field of civil engineering, shall determine the special conditions that refer to the functionality, equipping and security of sporting facilities. Unfortunately, urban conditions for accessibility to the facilities in Macedonia are rarely met, and hardly any sporting facility in Macedonia is accessible for the persons with disabilities, both as visitors and as sportsmen.
proposed measures

Development of legislation. Also, pressure should be put to involve athletes with disabilities in the training process within the existing sports club. To ensure that the primary objective is accomplished, as high number of people with disabilities as possible should be involved in the programs for physical exercise and sports, basic pre- requisites for outstanding achievements of athletes with disabilities should be provided, as follows: quality professional work planned and managed by professional staff, usage of adequate sporting facilities, equipment and sports equipment as well as the possibility of quality preparations.
LINKED Education; Accesability; Services for support; Public awareness; Legislation; Informatic society

convention
State Parties recognize the right of sport activities of the persons with disability. With a view to enabling persons with disabilities to participate on an equal basis with others in recreational, leisure and sporting activities, States Parties shall take appropriate measures: to encourage and promote the participation, to the fullest extent possible, of persons with disabilities in mainstream sporting activities at all levels; to ensure that persons with disabilities have an opportunity to organize, develop and participate in disability-specific sporting and recreational activities and, to this end, encourage the provision, on an equal basis with others, of appropriate instruction, training and resources; to ensure that persons with disabilities have access to sporting, recreational and tourism venues; to ensure that children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including those activities in the school system; to ensure that persons with disabilities have access to services from those involved in the organization of recreational, tourism, leisure and sporting activities.

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4
crosscuting
Disability in other areas
Instead of two-three pages, several doctoral studies can be made for many of the areas highlighted in this presentation, though that would still not cover the possible content in its entirety. This chapter only provides a short view, individually, of certain more important aspects. According to Murphys Law, when things go wrong, they will become worse. This is used as a motto for the multiple discrimination part with emphasis on women and children with disabilities, but also in terms of multiple disabilities (physical and sensory, for example). Poverty, as both a reason for and a consequence of disability, must be a part of this presentation; therefore, more attention is paid to it in this part. At first glance, political participation appears to be an issue of access to justice. In essence, it is more a segment issue that stretches across the main stereotypes and the hopeless situation and defeatism of the voting category of people, families and supporters who are unable to recognize their own power bestowed upon them by the active voting right. The realization of the rights of persons with disabilities, in terms of the body of law, depends perhaps on national legislation; however, it is actually realized at a local level and in the day-to-day life. Local self-government is part of the state administration, and we do not review its actions in the part relating to institutions but in the tangled role and possibility for inclusion in partial segments. The process of promoting availability and accessibility of existing products and services for persons with disabilities is of great importance for the purposes of improving the inclusion of persons with disabilities in the community. We refer to adaptation and standardisation of existing, as well as establishment of new forms and standards. The principle of universal design, if systematically acBaseline rewiev of the situation of people with disabilities in Macedonia (2012)

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cepted and regulated, can contribute to this area in terms of efficiency of new buildings and products, as well as in terms of cost-effectiveness of products and services which, apart from the persons with disabilities, shall be felt and used the most by other community members. This part also lays special emphasis on the treatment of business capacity of persons with disabilities. It mainly refers to persons with intellectual disability, but it often (according to the old saying the rain falls on the just and the unjust) also covers other categories of disabilities. The government measures here are to say the least confusing (if not discriminatory). Nevertheless, the practice of declaration of absence of business capacity without a regular procedure before a competent body is a reality faced by the persons with disabilities in Macedonia, and as such, it is sanctioned in the international law (which we have ratified) with more than one convention. The monitoring mechanism, according to Article 33 of the Convention, is multilayered, includes several subjects and is partly incomprehensible, at least in our circumstances. Therefore, we pay more attention to it in this part. Macedonia will need to establish such a three-layered monitoring mechanism for campaign implementation, as follows: expert, coordination and independent. In addition (pursuant to Article 3), it will also need to include the organisations of persons with disabilities. A true challenge, indeed. The media and the awareness of the general public are interlaced with much more segments of social life than the disabilities phenomenon. However, in our story, we treat them separately, though in the same group. Media, such as they currently are in Macedonia, have a need for sensation, adverse promotion and cheap production (most frequently reproduction). This economic aspect creates a mental structure of viewers and a serious psycho-dependence on irrelevant topics information. And, is there anything more irrelevant than the persons with disabilities at the moment when the entire nation is in mourning because Ali Riza has died for the second time??? And public awareness, if truth is to be told, is at a much higher level than ten years ago. Many known and unknown transition heroes made efforts in that respect, and a lot of money, energy and time was spent. This produced results. It is a good thing. But it is not good if we remain passive. Human rights are not private property they are shared heritage. A situation is not cast in stone, nor is it guaranteed to last forever. Nothing is for free!!! Benefits must always be defended in the hardest possible manner on everyday basis, anywhere, and by all of us, regardless of what liberties the others may think we should take, or whether we ask ourselves if we have the right to dare.

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4.1. Multiple diskrimination


When things go wrong, nothing can prevent them from becoming worse
Murphy

Often, a person embodies several protective traits and it is easy to assume that unequal treatment can occur simultaneously on several bases. An older worker, for example, with pain in the back, shall face problems in terms of finding a steady job due to the age and disability combination, or the cultural or language needs of a person with disability belonging to an ethnic community can be disregarded when providing certain disability related assistance. In addition, women with disability are one of the most vulnerable groups in many EU member states, and further afield. In such cases we talk about multiple discrimination, that is, discrimination on more than one basis, which consists not only of the sum of two discriminatory bases, but of the very result which is quantitatively different, that is, synergetic. It is precisely this synergetic nature of multiple discrimination that makes it very difficult to crystallize certain policies and legal solutions for this phenomenon. Although multiple discrimination cases are known, the existing anti-discrimination legislation cannot solve this problem, due to the fact that the legislation is designed to perceive discrimination as a single problem. And herein lies the paradox; the more a person differs from the normal image, the more it is likely that the person shall be a multiple discrimination victim, and at the same time, the one is less likely to be provided with appropriate protection against this type of discrimination. 4.1.1 The gender issue and the disability issue. The unequal social treatment is mostly expressed when a woman with disability is in question; a category excluded among the excluded which does not enjoy the equal opportunities for choice as compared to another woman or to a man with disability. Women with disabilities face double discrimination because of their gender and because of their disability. Women with disabilities are, more than anyone else, exposed to abuse and violence: in their homes, at work (if they manage to get it), and in their environment. They are mostly affected by the stereotypes related to disabilities. Because of their fragility, predetermined by the female gender and their disability situation, women are always perceived with perplexity, doubt, and are freBaseline rewiev of the situation of people with disabilities in Macedonia (2012)

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quently considered unstable and incapable, and are thus excluded them from the mainstreams of society. Roma, Albanian, or Turkish women with disabilities, or women with different sexual orientation, or provincial women, find themselves in an even more difficult situation. They face multiple discriminations, which is what pushes them to the margins and renders them even more invisible socially. Double patriarchy victims also face challenges when talking about concluding marriages and raising children. The healthcare system does not provide them with special gynecological chairs, there is no relevant health accommodation for this category of women who have just become mothers, and the health institutions are not interested in providing suitable conditions for women with disabilities. Personal assistance for mothers with disabilities is another issue which is yet to be opened in our society. The following legislation regulating the women and disabilities issue can be mentioned: Law on Equal Opportunities for Women and Men and the Law for Protection against Discrimination, as well as the employment area laws: Law on Labour Relations, Law on Health Insurance, Law on Health Protection, Law on Social Welfare, Law on Pension and Disability Insurance, Law on Primary, Secondary and High Education; and the Criminal Code, Family Law and the Law on Housing can also be mentioned.The existence of these legal solutions treating the issue of women and disabilities is not a problem; the problem is their respective implementation and their discriminatory provisions. Inclusion of women with disabilities in the labour market is one of the bitter issues for the Macedonian society. UNIFEMs 2008 research, entitled as The position of physically disabled persons in the labor market, showed that 31.1% of men with disabilities are employed against 29.2% women. The right to work, equal participation in public spheres and equal salary are relatively satisfied in the municipalities with Macedonian ethnic population, whereas a Muslim woman with disability in Macedonia is still denied that right. It would be good to apply positive discrimination through introduction of a quota system in terms of inclusion of women with disabilities in all spheres of social life. It is the only way towards achieving visibility for this category of citizens. It is necessary to raise the population awareness that women with disabilities can also become leaders which would generally be beneficial for the entire social movement of persons with disabilities. Strengthening the capacities of women with disabilities should be the new social task of the patriarchy. Conditions should be created so as to double their opportunities for inclusion and active participation, possibilities to express their abilities and the capacity for equal contribution to the society. But, how can we go beyond the border, from being powerless to obtaining power, from object to subject, from patient (entity enduring the action) to the person performing the action only through raising the voice of the woman with disability who wants to, knows how, and is able to contribute to social changes beneficial for the entire society.
Disability - the missing puzzle piece

4.1.2. The adults and the disabilities issue. Adults with disabilities face double or triple discrimination, on the basis of age and on the basis of disability, and also on the basis of gender. They are treated as another social category not deserving social attention. While talking about adults and disabilities, one must have in mind the fact that disabilities are an even more frequent condition during the advanced human age, and in order to deal with it, services for support and rehabilitation are needed. The population is aging; it is expected that in the following 25 years, the population over 65 years of age shall increase by 65% as compared to the current figure, on top of increasing incidence of chronic diseases. Macedonia is keeping up when it comes to the development of picture of old population. Although young in terms of independence, it has recently passed the demographic age threshold. With 15% population over the age of 60 at the 2002 Census, Macedonia went beyond the old population coefficient of 12%. The National Strategy for Older Persons covers old persons according to the gender category, but the same are not covered under the degree and type of disability. Therefore, we face discrimination against old persons with disabilities who would like to be accommodated in rest-homes. There are cases when a person is denied the right to such an accommodation only on the basis of his/her disability. Another challenging part, while having in mind this Strategy, is the age limit covering only people over 65 years of age, in terms of realization of the social welfare right. This provision does not provide an opportunity for elderly people with disabilities under 65 years of age to be part of such social packages, regardless of the gravity of their current situation. Adults with disabilities should also be provided with physical accessibility, institutional accessibility and accessibility to information. Besides of the four state rest-homes in Macedonia, there are 39 retirement homes and 20 clubs for retired people which are under competence of PIOM (Pension and Disability Insurance Fund of Macedonia) and the associations of retired people. They only accommodate retired people without own homes or accommodation, whereas all other needs are satisfied independently. Compared to old persons as a general category, the access to health services and justice represents a significant challenge for old persons with disabilities, especially in situations in which regulations on healthcare and social services standards are lacking.

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4.1.3. Children and the disability issue. In accordance with Article 42 of the Constitution of the Republic of Macedonia, the state provides and guarantees the rights, and offers protection to every child. Children are entitled to live in families, and the state provides support to the families with children with disabilities through continuous pecuniary assistance, financial compensation for aid and care of another person, right to reduced working hours. However, biological families receive lesser state support, and more funds are allocated for residential accommodation of children with disabilities. Another problem is the fact that children with disabilities in Macedonia are not identified since families do not undertake any actions relating to their children due to their fear of being labeled. Stigma and marginalization still rule this issue. There is no National Registry for Children with Disabilities; however, according to the Analysis of the Ministry of Health entitled Children with disabilities in the Republic of Macedonia, the number of persons with disabilities under the age of 18 is 58.000, but the Social Affairs Institute has registered only 8.211 persons with disabilities under the age of 26. However, this data only cover children for which certain benefits have been claimed by the MLSP and the MH. The state has adopted various documents, such as: the Law on Social Welfare, the Law on Children Protection, the Law on Education, and the National Strategy for Equalization of Opportunities for Persons with Disabilities; however, these documents are either not implemented in practice or their content is incomplete. Children are also entitled to education, but despite of the positive legal provisions, schools are not accessible for children with disabilities. This non-existence of accessibility for children with disabilities, inter alia, disables their inclusion in schools. This situation results into them being included in the group of children excluded from schools, or their parents are forced to enrol them in some private schools where prices are too high for the average Macedonian family standard. One of the problems faced by the parents of children with disabilities in the preschool and the educational system is the lack of personnel qualified to work with children with disabilities. In addition, the number of children enrolled in special schools is higher, whereas the number of children with disabilities in regular education is lower (according to the data indicated in the analysis Children with disabilities in the Republic of Macedonia). Based on Article 48 of the Law on Protection of Children, a kindergarten for children with physical or mental disability depending on the type and level of disability can provide care and education for these children in an appropriate professional institution, or within the regular kindergartens, but in special groups and in accordance with special programmes. The Programme for social welfare rights entitlement for 2012, in order to improve the quality of care and protection of children in risk, foresees strengthenDisability - the missing puzzle piece

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ing of the capacities of the professional teams in the social affairs centres and the social welfare institutions through training of trainers at a national level and training of trainers for development of skills for strengthening of the internal capacities of children, for the purposes of their better integration in the society. It still remains to be seen how these teams shall afterwards be ready to face the problems in practice.
proposed measures

The disability issue is to be included in the legal provisions dealing with rights of women, children, adults, ethnic groups. Introduction of a quota system for persons with disabilities according to the principle of gender and ethnic representation within the gender and ethnic convention policies. Article 6 from the Convention on the rights Inclusion of the disability issue in of persons with disability regulates the mulgender budgeting. tiple discrimination of women and says that: Raising the capacity of local com1.States Parties recognize that women and girls with disabilities are subject to multiple missions for equal opportunities bediscrimination, and in this regard shall take tween men and women. measures to ensure the full and equal enjoyRaising the capacity of the members ment by them of all human rights and fundaof the Parliamentary Commission mental freedoms. 2.States Parties shall take all appropriate for equal opportunities between measures to ensure the full development, admen and women. vancement and empowerment of women, for Promoting the system for early dethe purpose of guaranteeing them the exercise tection and specifying the opportuand enjoyment of the human rights and fundamental freedoms. nities and needs of the child, and Article 7 applies to the children with disearly treatment of rehabilitation, ability who are also facing multiple discrimihabitation and education. nation. They are determined with those proviLINKED Education; Accesability; Services for support; Public awareness; Legislation; Employment; Social protection; Helth protection; Justice;
sions: 1.States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children. 2.In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration. 3.States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

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4.2. Political Participation


Compound interest is the most powerful force in the universe
Albert Einstein

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According to the Constitution of the Republic of Macedonia and the Electoral Code, every citizen with 18 years of age has the right to vote. The voting right is equal, general and direct, and the same is realized during free elections and by secret voting. The voting right is denied to persons deprived from the business ability. Every citizen is entitled to participate in the performance of public functions. The right to be elected is similar, but this right consists of additional conditions not relating to disability. Accordingly, disability by itself cannot be the basis for one person to be denied the right to vote. Voting rights can be denied only to a person deprived from the legal capacity. PASSIVE RIGHT TO VOTING There are no regulations obliging the polling stations to be accessible in physical terms for the persons with disabilities. In practice, voting is frequently carried out in facilities not accessible for persons with disabilities. The Electoral Code foresees that the person unable to vote at the polling station (disabled or sick person according to the guidelines of the State Electoral Commission), who is willing to vote, shall CASE personally or through a proxy, notify the municipal electoral commission, During the 2006 elections, the Regional Henthree days at the latest, before the dicap Centre from Prilep organised education date foreseen for voting. and monitoring of the home voting for persons The electoral board shall enable this with disabilities in Prilep. The number of such voters was 378, compared person to vote in his/her home, one to the insignificant 42 voters two years before day before the elections, in a manthose elections. ner providing voting secrecy. The electoral board shall provide a special voting box brought empty into PARADOX the persons home. Minutes shall be prepared for the procedure. It is interesting to note that voting on Saturdays Voters with physical disability or (the day before the elections) is organised for illiterate voters, who are unable to the prisoners of the penitentiary institutions, vote due to the previous, are entitled but not for the persons with disabilities located in hospitals and institutions to bring a person with them who shall help them in the voting proceDisability - the missing puzzle piece

Diagram no.10 Are poeple with disabilities included in the political life?

dure. If the person does not bring anyone with him/her, the electoral board shall designate another person out of the voters. One person can assist two voters, at the most. The electoral board shall advise the assisting person that his assistance must not influence the voters decision. ACTIVE RIGHT TO VOTING Persons with disabilities, under equal terms as other citizens, can participate in the political life. The same can establish or become members of political parties and other non-governmental organizations, can be candidates at elections and can be elected for any public function. However, the reality is different. According to the research Lets ask ourselves together? from 2005, the question whether persons with disabilities are included in the political life was answered as follows: 53% of the respondents believe that persons with disabilities are nowhere to be found, 27% see them only before elections, 17% stated that they see only a few, and 2% indicated that the number of persons with disabilities in politics is sufficient. Persons with disabilities, following the STATEMENT European Parliament example, in 2003, upon an initiative of Polio Plus, estabOur unification is due to a noble idea; to improve the laws and the access to the lished their own lobby group in the Macrights of the persons with disabilities, our edonian Parliament, consisting of MPs fellow citizens. It all started as an idea, from different political parties, entitled then it became a project and it afterwards as Inter-party parliamentary lobby group grew into a movement. for rights of the persons with disabilities Finally, it all ended by obtaining 20.000 signatures at the first successful citizens (IPPLG). initiative for the Law on the Rights and This group, after any new electoral cyDignity of Persons with Disabilities. In cle, is renewed, and its number is conaddition, this lobby group was important tinuously increasing. in terms of increasing the cohesion of our society because our work has helped in the Last year, the fourth group was estabovercoming of political, ethnical and relilished consisting of 44 MPs (of course, gious differences, and we all became one. not all of them being equally active). Statement of Mrs. Liljana Popovska,
first Chairman and current Deputy Chairman of IPPG.

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IPPG should be given credits for the adoption and the amendments of many provisions which (at least in legal terms) have positive impact on the everyday life of persons with disabilities. The IPPGs 2005 initiative and support for persons with disabilities provided accessibility of the building of the Macedonian Parliament for persons with disabilities. The Government of RM followed that example. This also encompasses a moral value, besides of the practical one. Namely, the society has thus displayed and confirmed the right for persons with disabilities to be present in the parliament and to be included in the decision-making process. Unfortunately, we must conclude that most of the other facilities used by the state and other public institutions are not accessible for persons with disabilities. It is even more unfortunate to conclude that the previous eight electoral cycles and the number of more than 1000 MPs do not include a single person with disability in the parliament, which is not the case with the worldwide parliaments or the regional ones. The proposals to mitigate this paradox by introduction of electoral lists quotas (similar to the case with women) still do not receive any feedback.
proposed measures

For the purposes of an effective realisation of these rights of the persons with disabilities, it is necessary to provide accessibility of the voting facilities, as well as of the facilities of the government and other public affairs institutions. Electronic media should provide access to the more important electoral campaign programmes with a sign language for persons with impaired hearing. Electoral materials should also be available in Braille alphabet for persons with impaired vision and in a form accessible and easily understandable for persons with intellectual disability. Hospitalised persons should be enabled to realise their voting right. The legal provision denying the voting right to persons deprived of business ability should be abolished. Quota system for representation of persons with disabilities in the lists of mayors and advisors should be introduced.

convention
States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected, inter alia, by: ensuring that voting procedures, facilities and materials are appropriate, allowing assistance in voting by a person of their own choice; participation in non-governmental organizations and associations concerned with the public and political life of the country, and in the activities and administration of political parties; forming and joining organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.

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4.3. Universal Design


You can have the Model T in any colour - so long as its black
Henri Ford

Universal design is defined as: Design of products and environment that are usable for all persons, to the greatest extent possible, without a need for adjustment or specialised design. In the Republic of Macedonia, the universal design concept is still not effectively included in the legislation. Although there are certain principles in the Rulebook on urban and business planning, their full conformity and the mechanisms for their effective implementation are lacking. Certain elements for Universal Design application are visible in the ad hoc measures and initiatives deriving from some ministries. Best experiences in the Universal Design application are defined as practice and procedures in construction that are in accordance with the universal design principle and which enable such designing examples and satisfy the needs of the widest possible number of people using the facilities. Although such a legal solution doesnt exist in the Republic of Macedonia, the special subject Universal Design, under supervision of Prof. Vladimir Karanakov, PhD, is studied at the Faculty of Design and Technologies of Furniture and Interior, at the postgraduate studies of the programme: Furniture and Interior Designing. The main concept is a Developing design philosophy. People living with us or visiting our home vary in age, physical features, from children to old persons, with various and inconsistent opportunities and abilities. As we grow up we grow old, and different persons visit our homes, due to which our entire housing requires changes and adjustments. A house or a facility designed and constructed according to the universal design principle, shall be safer and more adjustable in terms of different ages and abilities of the people living, using or visiting these facilities. According to the WHO, the main universal design principles are based on seven principles: The first principle Equitable use is focused on the provision of equitable access for all users in a dignified manner. Flexibility means that the facility or house design was developed in accordance with the wide range of individual needs, opportunities and capacities throughout the users life cycle.
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The space or facility project and design should be simple in terms of understanding regardless of the experience or access of the user. The third principle Simplicity should enable simplicity of the designed elements which are to function in a simple and intuitive manner. The obtaining of information by using a combination of various methods, whether visual, sound or tactile, shall enable safe and equal usage of the house or facility elements. The fourth principle Perceptible information stimulates the receiving of information through all senses, by using our vision, hearing and touch. The fifth principle includes the tolerance for error, reducing the possibility from occurrence of unwanted results. It includes the conclusions containing safety valid features which provide safe usage of the space or the product. The principle Low physical effort covers the limiting factors of strength, endurance and skills, necessary for the purposes of accessing certain areas or usage and control of products. The last, seventh principle Space for approach and use, is focused on the necessary area for access of persons, equipment, etc. The application of these universal design principles results into greater outcomes, as compared to the conditions prescribed by the laws and standards in the field of architecture and civil engineering.
proposed measures

The realisation of universal design objectives mainly requires a system support. The entire process would be realised and valorised with the adoption of legislation (recommendations) which shall regulate the building of facilities in the Republic of Macedonia thereby satisfying the uniCONVENTION versal design principles. It is also necessary to emphasise the edUniversal design means the design of ucation factor as a very important one products, environments, programmes and for the purposes of obtaining increased services to be usable by all people, to the knowledge and for popularisation of the greatest extent possible, without the need universal design qualities. for adaptation or specialized design. Universal design shall not exclude assistive devices for particular groups of persons with disabilities where this is needed. The State Parties shell undertake or promote research and development of universally designed goods, services, equipment and facilities, as defined in article 2 of the present Convention, which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines.

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LINKED Education; Accesability; Services for support; Legislation; Employment; Social protection; Helth protection; Justice; Non discrimination

Disability - the missing puzzle piece

4.4. Religion
God Moves in a Mysterious Way...
William Cowper

The choice of religion and affiliation to a certain religion is a right of every person. The charity approach of the religion regarding the issue of disability arises from the stereotypical interpretations of disabilities by religion. Therefore, Christianity defines disability as punishment of God and payment of sins committed by ancestors (believers are men created (only) by God in His image and infidels are bound to repay their sins); according to other religions, disability is defined as heritage from a previous life; the Islam defines disability as a process of learning through which real values are discovered (Allah plans in advance); but according to these religions, disability is sometimes considered as blessing (the will of God is manifested through persons with disabilities). The Constitution1 of Macedonia (Article 19) guarantees the freedom of religion. The Law on Religious Communities and Religious Groups2 (Article 4) prescribes that no citizen can see his/her rights being violated due to his/her religious beliefs, the affiliation to a religious community or a religious group, and performance, that is, participation in the performance of religious ceremonies and other types of expression of religious beliefs. However, in order for these provisions to be actually available to all citizens, the issue of disability should also be taken into consideration. The Law on Legal Status of Churches, Religious Communities and Religious Groups3 (Article 3) regulates the right to freedom of conviction, thought and conscience, and it also includes the freedom of manifestation of ones religion and beliefs, that every person can exercise individually or collectively and publicly or privately. Article 4 stipulates that religious discrimination is prohibited. The choice of religion is one of the bases of discrimination regulated by the Law on Prevention and Protection Against Discrimination4. All aforementioned laws emphasize the freedom of religion, the freedom of performance of religious matters and religious ceremonies as a private matter of every person; There are many religious institutions in the Republic of Macedonia. The Macedonian Orthodox Church (MPC) has more then 2,000 churches and monasteries.
1. 2.

Constitution of the Republic of Macedonia Law on Religious Communities and Religious Groups (Official Gazette no. 35/97) 3. Law on Legal Status of Churches, Religious Communities and Religious Groups (Official Gazette no. 113/07) 4. Law on Prevention and Protection against Discrimination (Official Gazette no. /2010)

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Christian associations are organized in several parishes and churches. There are many Islamic religious buildings, such as 590 mosques, masjids, Islamic centers, 500 maktabs, etc. In addition, there are around ten synagogues, catholic cathedrals and Methodist churches. Besides the existence of legal provisions guaranteeing citizens the right to religious expression, citizens with disabilities cannot completely exercise the right to access to religious buildings, the right to liturgy or religious ceremony adjusted to their possibilities and participation in religion-related events. How can persons with disability be devoted believers when they face limited access to religious buildings; being unable to genuflect and pray to Allah, being unable to read the Holly Bible or to hear a mass? Does the inaccessibility of religious practices make the persons with disability disbelievers? How to provide to persons with disabilities who are also believers, equality in terms of access to the religion and how can the religion be opened and made accessible to this category of believers who are equally devoted as other believers? How to make a transition from a religious charity to enjoying the right to choice of religion, access and inclusion of persons with disabilities in religious canons? This is the new issue that should be considered by the religious leaders. In this aspect, religious institutions should not resolve the issue of disability in terms of charity (offering charity, taking care of persons with disability in exchange of receiving blessing from God and redemption of sins), but in terms of religious expression on equal basis with other citizens.
proposed measures

Religious buildings should be made accessible and available to persons with disabilities. Every person is entitled to participate in religious events; every person has right to be provided with physical access to religious buildings and religious literature. The Holly Bible is the most popular book of all times - dont you think it should be written in Braille alphabet? The preachment of priests should be rendered proactive and they should be CONVENTION modernized. Everything is changThe principle of equality and nondiscriminaing and so should the religion (apart tion is part from the Article 4 in the Convention from its dogmatism), and it should of the Rights of Persons with Disability. become more open to the percepStates Parties shall prohibit all discrimination of things. Nowadays, the issue tion on the basis of disability and guarantee to persons with disabilities equal and effective of the persons with disabilities is exlegal protection against discrimination on all clusively a human rights issue. grounds (race, colour, sex, language, religion,
LINKED Education; Accesability; Non discrimination
political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other). Religious determination is also part of the rights of the persons with disability and they should equally participate in religious activities.

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4.5. Services of Support and Independent Living


Its not radical changes that worries the States - but the citizens indipency
Noam Chomsky

The services for support and independent living are an important tool for reduction of the poverty and the exclusion of persons with disabilities, as well as a tool for complete and independent living of persons with disabilities. They provide a framework for implementation of the basic human rights (access to education, healthcare, housing, occupational training), including rehabilitation and habitation. Macedonia has no complete system of services for support, nor a framework that promotes independent living of persons with disabilities. There are certain elements of support services, but the same are segmented and scatte red throughout the welfare and healthcare system. The right of person with disbailities to daily provision of care is regulated in the Law on Social Welfare, Article 31. The categories of persons with moderate and severe mental disabilities and persons with physical disability who are not able to take care of themselves are particularly emphasized. The right to be taken care of in daycare facilities (accommodation, services related to food, organized and planned utilization of time) is provided to children with physical disability, predominantly, for the purpose of their integration in the everyday life. According to the Law on Social Welfare, daycare centers are designed to be social services oriented towards the community. This right can be exercised by the aforementioned categories of citizens even if they live with their families. Unfortunately, this service is not sufficiently present, although it is believed to be one of the best support services. There are certain attempts, but in order for such services to be essentially functional, it is necessary to implement a system for provision of services and their horizontal and vertical coordination. The basic activity of such daycare facilities is to provide services of daycare and accommodation, care, food, psychosocial rehabilitation and re-education, counseling and services of organized time usage for children with moderate and severe mental disabilities aged between 5 and 18 who live with their biological families or are being taken care by foster families and priority is given to children who do not use other services and who are exposed to risks of marginalization or institutionalization. The criteria and standards for establishment and operation of such daycare centers are regulated in a separate rulebook.
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Until now, in Macedonia, 29 daycare centers for children with moderate and severe mental disabilities have been established and are operating, housing a total of 365 beneficiaries. During the last few years, the Ministry of Labor and Social Policy has co-financed 6 daycare centers for young adults and adults with mental disabilities which are managed by the Republic and Regional Center for Support of Persons with Intellectual Disability PORAKA from Skopje, PORAKA Negotino, Poraka Nasha- Kumanovo and Poraka Nova Struga. The acknowledgment of the right of persons with disabilities to independent living and inclusion into the community should also include governmental policies for life away from the institutions, for services that would include homes, residential and other type of support provided by the community. The key elements for any intervention that is designed to make effective the right to independent living and inclusion into the community is the explicit legal acknowledgement of the right of persons with disabilities to decide where and with whom they would like to live. Moreover, this acknowledgement should openly reflect the non-implementation of the right related to the meeting of the obligations for residential care, which are made contrary to the desires of persons with disabilities. Housing is an area in which people with disabilities face a series of problems and barriers. Barriers that might deflect them from the intention of living independently and inclusion in the already existing forms of institutionalization. These barriers occur as a result of the already existing stereotypes and prejudices, as well as because of the inaccessible environment, which results into an occurrence of a situation in which person with disbailities are unable to live independently. The Housing Law contains a provision stating that the Government of Macedonia shall decide regarding the lease of apartments in state ownership to socially vulnerable persons who do not have a place to live pursuant to the Law on Social Welfare which, of course, includes persons with disabilities. The three basic barriers on the path to decent housing- the economic, cultural and legal- are at the same time related to persons who face social exclusion on the same grounds, as well as to the housing locations which are also marginalized due to a variety of social circumstances. The financial situation is another closely related problem faced by persons with disabilities. In order to enjoy their right to independent living, persons with disabilities need to make substantial changes into their homes to meet their needs, which requires costly investments. Instead of independent living, such costs push persons with disabilities into dependant living, segregation and isolation. On the other hand, social housing, as social exclusion compensation mechanism, is a concept which is understood in different manners in Macedonia and which contains risks from misinterpretations. Social housing is frequently placed into context, that is, it refers to the provider of this particular type of housing, as well as to the entire group which is provided with housing services. In terms of dealing with the challenges in the housing area, the national strategic housing policy directions have been defined in the Strategy on Housing of the Republic of MacDisability - the missing puzzle piece

edonia (2007-2012), prepared by the Ministry of Transport and Connections. The Strategy is especially tackling the issue of social housing and housing of vulnerable groups, and it also envisages the adoption of a special law on social housing which on the other hand, does not envisage any special provisions for persons with disabilities. Housing of persons with disabilities is an area which, just like any other area (social welfare, healthcare, employment, education), requires unhindered vertical and horizontal communication with other shareholders and following of the already existing or new provisions that should lead to inclusion and equal opportunities for persons with disabilities. Personal assistance. The Republic of Macedonia has no regulations defining the right to personal assistance and occupational assistance. This type of assistances is correlated to the right to caregivers allowance. The caregivers allowance is a sum of money allocated to help people perform their everyday tasks more efficiently in case when in order to perform such tasks they have to rely on the assistance of other persons, or as it is better known, support and service, because this category of people is not able to meet their needs themselves. However, due to the insufficient clarification of terms, the caregivers allowance is intended for persons hired to assist persons with disabilities in the performance of everyday tasks, such as taking them to school, assistance for people with visual impairment while eating, etc. In this context, the legislator may in no case limit the age, that is, set the age over 26. On the other hand, the amount of this type of support allowance is too low and parents cannot afford to hire persons who would work as personal assistants (licensed and educated) for their children or for persons with disabilities to hire another person to help them. Due to the low standard of life, this allowance, instead of allocating it for the assisting person, often remains in the family budget so as to cover some other family needs, leaving the support to one family member. Habilitation and rehabilitation are usually processes with limited duration which are tailor-made to meet individual needs. They imply establishing of goals that should be met by means of coordinated support of professionals and preferably, participation of members of the family and close friends. The habilitation and rehabilitation may also include medical, psychological, social and occupational supports. These services are partially regulated in the Macedonian legislation, in the Law on Healthcare and Health Insurance, through rehabilitation based on treatments in health spa resorts and visiting nursing care services. However, the same are far from satisfying the needs of the persons with disabilities. Support services offered during the decision-making process. There are no such services in Macedonia. This is due to the fact that persons with disabilities are still being included in defectology system and their right to make a decision lies with their guardians and protection practices. It is the individual who makes a decision, the person/organization providing the support and the best decisions for the person/what that person prefers. On the other hand, these services may help in
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terms of clearing out the absurd and understanding that persons with more severe disabilities are still persons with own histories, interests and goals in life and that they are persons capable of employing their business capacity. The group of support services that may be included and exist in some form, consists of: daycare centers, special schools, companies employing persons with disabilities, nursing homes, small group homes, organized assisted living, etc. All these services are not completely harmonized with the needs of persons with disabilities in order to help them live independently.
proposed measures

In order to efficiently implement these support services, it is necessary to include the principle of independent living into the legal framework that shall clearly define it as legal right and obligation of the competent authorities and service providers, also envisaging resources in case of their violation. Such legal frameworks should also include acknowledging of the right to services for providing access and support that should provide independent life and inclusion in the life of the community, whereas the warrantees for the support of independent life should be provided and established based on the individual choice of each person and his/ her aspirations. Adoption of regulatory framework in the field of support services for people with disabilities; Regulatory mechanisms should be set in place in close correlation with the specifications of the process of decentralization; CONVENTION All relevant actors in this process States Parties to this Convention recognize the (state authorities, representatives of equal right of all persons with disabilities to live the beneficiaries, service providers) in the community, with choices equal to others, need training and support, exchange and shall take effective and appropriate measures to facilitate full enjoyment by persons with disof information and good practiabilities of this right and their full inclusion and cal examples in order to efficiently participation in the community, including by enparticipate in the construction of a suring that: modern system of regulatory mecha. Persons with disabilities have the opportunity to choose their place of residence and where and anisms for services and support serwith whom they live on an equal basis with others vices; and are not obliged to live in a particular living Active inclusion of beneficiaries (or arrangement; their representatives) in the creation b. Persons with disabilities have access to a range of in-home, residential and other community supof such regulatory mechanisms.
LINKED Education; Accesability; Services for support; Legislation; Employment; Social welfare Helth protection; Justice; Non discrimination;
port services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; c. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

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4.6. Legal capacity


A man is just a man!
John Henry

Natural person is an individual with rights and obligations. This capacity of individuals to be holders of rights and obligations is called legal capacity. Based on this, the legal capacity is identified with the term subject of law. Legal capacity is not conditioned by age or other individual characteristics. Unlike legal capacity, the business capacity of natural persons comprises of the possibility for the subject of law to perform legal matters, to act consciously and in its own will, based on the principles established in the general legal norms. In order to acquire business capacity, certain prerequisites should be met, such as certain age (most frequently, it is the age of maturity), as well as physical and mental capacities. In our country, this condition is established in the Constitution and is exercised at the age of 18. Pursuant to the constitutional provisions1, in the Republic of Macedonia, citizens with disabilities may be partially or completely deprived from their business capacity on equal terms as the other citizens. This means that it can be done only in legally defined cases and in a legally defined procedure. Besides of the age factor, the physical and psychological health of persons are of special importance for the business capacity, where persons with mental disability who do not have developed consciousness and will, shall not be recognized the right to perform certain legal matters. The law envisages the category of representation for persons who do not have business capacity, with the objective of protecting their rights and interests. The Law on Extrajudicial Procedure2, in several of its sections, provides protection of persons with disabilities which provides efficient participation and protection of the rights of persons with disabilities in front of the institutions of justice. It is important to mention the basic provision according to which courts are exofficio obliged to take care of and to take measures to protect the rights of persons who are not able to take care of their rights and interests themselves. This special procedure is designed in order to protect persons with mental disabilities, feebleminded persons and persons with other specifics, who, at the same time, are not able to protect their rights and interests. Based on this provision, during judicial procedures, courts are bound to take appropriate measures to protect persons with mental disabilities based on evidences that such persons are not able to protect their own rights and interests.
1. 2.

Constitution of the Republic of Macedonia Law on Extrajudicial Procedure

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The defining of the procedure for revoking ones business capacity ultimately results in appointing a guardian in accordance with the Family Law3, who is to ensure more efficient protection of the rights of persons with revoked business capacity which, inter alia, is performed through effective access to the institutions of justice. Besides of this basic goal, the defining of the procedure of business capacity revoking has an objective to prevent the events of arbitrary and uncontrolled revoking of ones business capacity, except in cases of actual supported need for revoking of the business capacity. For this purpose, there is possibility for partial revoking of ones business capacity. Regulations envisage a series of protective measures for persons whose business capacity has been limited. Guardians must act consciously and in the interest of their dependents and they are bound to use dependants property only for the purpose of protecting the interests and needs of such persons. Courts and other authorities are ex-officio bound to take care that guardians act with the due attention to protect the interests of their dependants, and in case they believe that guardians act contrary to their obligations, they are bound to notify the Center for Social Affairs, which in capacity of guardian authority, is authorized to perform monitoring. The Center for Social Affairs may, based on its ex-officio duties or proceeding upon a request from interested parties, place under protection other persons who do not have revoked or limited business capacity, but who are not able to take care of their own rights and interests themselves. While defining the form of protection under which a person is being placed under guardianship, the Center for Social Affairs is primarily guided by the interests of the person placed under guardianship and the interests of their family, as well as the financial situation, at the same time cooperating with the competent organizations and authorities to provide adequate protection. The Law on Civil Procedure envisages the option for appointing a temporary representative when persons without capacity to participate in civil procedures (e.g. persons with mental disabilities with revoked business capacity) do not have their own legal representative. In such cases, for the purposes of enabling an efficient procedure, but also in order to avoid violating the rights of persons lacking capacity to participate in civil procedures, the Law envisages the option for appointing temporary representatives. Macedonia doesnt have an established separate system to support persons with disabilities in legal matters. Such assistance is obtained on equal terms as the other citizens, that is, through the regular institutions (legal, administrative, lawyers assistance, guardianship, etc). In the Special Institute in Demir Kapija there are still persons with revoked business capacity5. Due to the introduced social financial benefits system, parents are placed in the position of their own children where adult persons with disabilities revoke their business capacity.
3. 4..

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Family Law Law on Civil Procedure White Book, publication Polio Plus

Disability - the missing puzzle piece

proposed measures

In the area of civil law, interdiction and guardianship laws should represent a priority area for legislative review and reform. Legislation currently in force in numerous countries allows the interdiction or declaration of incapacity of persons on the basis of their mental, intellectual or sensory impairment and the attribution to a guardian of the legal capacity to act on their behalf. Whether the existence of a disability is a direct or indirect ground for a declaration of legal incapacity, legi slation of this kind conflicts with the recognition of legal capacity of persons with disabilities. Besides abolishing norms that violate the duty of States to respect the human right to legal capacity of persons with disabilities, it is equally important that measures that protect and fulfil this right are also adopted. . This includes: legal recognition of the right of persons with disabilities to self-determination; of alternative and augmentative communication; of supported decision-making, as the process whereby a person with a disability is enabled to make and communicate decisions with respect to personal or legal matters; and the establishment of regulations clarifying the legal responsibilities of supporters and their liability. CONVENTION Norms of laws disqualifying a per1.States Parties reaffirm that persons with disson from office or performing a abilities have the right to recognition everywhere function on the basis of their disas persons before the law. ability also need to be abolished. 2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis These include norms disqualifying with others in all aspects of life. persons with disabilities from run3. States Parties shall take appropriate measures ning for political positions, or from to provide access by persons with disabilities to the support they may require in exercising their participating in juries or as witnesslegal capacity. es to legal acts. 4. States Parties shall ensure that all measures In the area of criminal law, recognithat relate to the exercise of legal capacity provide for appropriate and effective safeguards to tion of the legal capacity of persons prevent abuse in accordance with international with disabilities requires abolishing human rights law. Such safeguards shall ensure a defence based on the negation of that measures relating to the exercise of legal criminal responsibility because of capacity respect the rights, will and preferences of the person, are free of conflict of interest and the existence of a mental or intellecundue influence, are proportional and tailored to tual disability. the persons circumstances, apply for the shortest
LINKED Education; Accesability; Services for support; Legislation; Employment; Social welfare Helth protection; Justice; Non discrimination; Deinstitutionalisation;
time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the persons rights and interests. 5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

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4.7. Information Technology


Computers are like Old Testament gods; lots of rules and no mercy.
Joseph Campbell

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The information technology potential in Macedonia, as tool for inclusion of persons with disabilities in the contemporary social flows, is insufficiently used. Concepts, such as e-inclusion, e-accessibility, including the assisting information technology application, are insufficiently known to the wider public and are not properly legally regulated. There are no legal obligations to provide e-accessibility of the websites and for the e-services provided by the public institutions, according to the international standards for e-accessibility (or web-accessibility1), which is a common practice in the European Union countries. The social and educational policy part does not have any subsidies aimed towards encouraging the information technology use by disabled persons, and the same does not support any service providers which enable computer and Internet access and use assisting technology. In addition, there are no customs or other allowances regarding the import of assisting computer devices. Being on the positive side, in 2011, the Government of Macedonia adopted a National Strategy for e-Inclusion 2011-2014, whose first priority is increasing the Internet and other Information Communication Technologies (ICT) availability for all citizens. A group of measures are foreseen for ICT access subsidizing for several categories of citizens, including the persons with disabilities, as well as for procurement and distribution of assistive computers. The Strategy emphasises the importance of quality, trustworthy and easily accessible e-Government solutions for all citizens and indicates that it is necessary to provide electronic services, applications and websites development, which shall be easily accessible and usable by disabled persons. The previous and similar Strategy provisions for e-inclusion are in accordance with the commitments arising from the UN Conventions on the rights of persons with disabilities. 22 free-of-charge Internet clubs are operational under the competence of the Ministry of Information Society and Administration (MISA), of which one club is equipped with assisting computers. In accordance with the Strategy for e-Inclusion, all clubs shall be equipped with assisting devices, such as: keyboards with large keys, trackball, separated clicks, etc., by the end of 2012. Clubs employees shall be trained for use of the assisting
Disability - the missing puzzle piece

devices and the accessible software options so as to enable the persons with disabilities facilitated access The Government project Computer for every to computers and Internet. child provided computers for all students MISA already works on the prepafrom regular primary and secondary schools in ration of a Macedonian language Macedonia. speech synthesizer, which shall However, contrary to the remarkable inclusive enable the persons with impaired project title, the needs of the students with disvision to use and read screens. abilities were not taken into consideration during the project planning and implementation: Moreover, MISA plans to translate, Schools were equipped with standard computpublish and promote into Macedoers which cannot be used by students with, for nian language the Web Accessibilexample, vision impairment or physical disity Content Guide 2.0, by the end ability. of 2012. Since 2008, the Ministry Part of the accessibility options in the system of Labour and Social Policy is package Edubuntu Linux (such as the screen maintaining an information porreader), cannot be used in schools. Teachers were not trained in computer usage in tal I want, I know, I can (www. the work with students with special educational sakamznammozam.gov.mk), which needs. The project did not include procurement places information of interest for of assis ting computer devices. the persons with disabilities. Although the portal has been operational for several years already, and it contains an important base of relevant legal documents, the quantity and timing of information is insufficient. One should emphasise that the Macedonian market almost does not have any assisting computers, with the exclusion of keyboards with large keys. PARADOX
proposed measures

It is necessary to prioritize and intensify the implementation of the Strategy for e-Inclusion 2011-2014. The adoption of the Electronic Services Law shall be of particular imstatement portance, which shall impose an obligation, and shall also enable support Modern digital technologies can significantly facilitate the life of persons with for the public institutions in terms disabilities and can assist them in the deof providing e-accessibility for their velopment of their potential and abilities. websites and e-services. It is in the best interest of the society to The Government and the competent use computers and Internet as inclusion ministries shall have to upgrade the tools, to reveal Steven Hawking from our neighbourhood. successful citizen initiatives for introduction of assisting information techVladimir Lazovski, nology in primary education. Executive Director of This technology should be introduced Open the Windows. at all educational levels.
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Free-of-charge Internet clubs should become training centres for persons with disabilities. The Government should provide financial support for the service providers offering access to computers and Internet for persons with disabilities (who are unable to use a standard computer), as well as to provide support for accessibility of such services in the existing day-care centres for persons with disabilities or through establishment of new ones. Customs and other allowances should be provided for the procurement of these devices. Simultaneously, subsidies shall have to be provided for the persons with disabilities, in particular for those included in the education process, for procurement of computer equipment and Internet usage. In addition, it is necessary to promote the CONVENTION
States Parties according to Article 9 of the Convention shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others,to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public in urban and rural areas. This also includes providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost (Article 21); encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities.

CASE
Open the windows is the single organisation in the Republic of Macedonia and wider in the Western Balkans region which is fully dedicated to the provision and enabling of access for persons with disabilities to the up-to-date information communication technologies. As of its establishment in 2005, the organisation has provided services for more than 100 persons, in terms of personal development of the users and support for the educational needs. In cooperation with USAID, Open the windows, for the first time, equipped and trained teachers and employees from 21 regular primary schools in the country on the use of assisting information technology in terms of working with students with disabilities. More than 400 persons, of which about 300 teachers, were trained regarding the application of computers in the educational work with children with special educational needs. In addition, the schools were provided with the G-Compris games educational package in both Macedonian and Albanian language, applicable in the educational work. In cooperation with the Education Development Bureau (EDB), guidelines were prepared for the teachers, containing specific recommendations for working with students with disabilities. More information are available at: www.openthewindows.org

concepts for e-accessibility and e-inclusion and to strengthen the public awareness on the benefits from the same not only for the persons with disabilities, but also for the entire society

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4.8. Media
The only thing worse than being talked about is not being talked about
Oscar Wilde

The fight for diversity and respecting the equality is one of the objectives towards which any modern society should strive for. Media have an important role, together with the institutions and the civil society, in terms of forming the public opinion and directing the citizens towards certain approaches on particular social problems. In that context, the more you are present in the broadcasting, the higher is the perception of the problem and your visibility, where friends support you, enemies gossip about you, businessmen calculate, and politicians negotiate. The disability issue in the media is partially regulated with the Broadcasting Law1. One of the conditions for provision of radio and television programme services licence, defined in Article 46, is the availability of the programme to the various category of citizens, where the disability is not explicitly stated. Article 68 refers to principles on which radio and television programmes are based, but the list does not contain the disability. It was noted that media with obtained licenses for programme broadcasting do not comply with Article 80 of the Law, where it is indicated: The public broadcasting service and the commercial broadcasting companies that decided to cover the elections shall do it in a fair, balanced and impartial manner in their total programme, in compliance with the Law. On the other side, Article 121, paragraph 7, of the Law on Macedonian Radio Television (MRT) obliges development, planning and broadcasting of programmes, information programmes and news for people with impaired hearing, which shall be translated into sign language. However, the broadcasting, the media and the programme practices are different. First of all, the media companies themselves are physically not available and accessible for the persons with disabilities. The MRT building, which is mentioned in the Law as a media company, is inaccessible. But this also refers to almost all 15 state TV companies and 49 local TV companies. Of course, we have the Broadcasting Council, which, the same as the TV companies, has forgotten about the legal obligations. As far as the programmes are concerned, the media are still perceiving this issue in terms of charity; so, we see information appealing for help for a persons with disabilities or a sad story related to a member of this marginalised group.
1.

Broadcasting Law

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During the last three years there was no information whatsoever treating the disability issue on the front page of a written or electronic media, nor an information on the same in the prime-time news. Unfortunately, information are still appearing in the social and health columns, although we are talking about an issue related to economy, politics, accessibility. Regarding the intensity of discussing and treating this issue, most of the news and information were broadcasted during the pre-election period (2010- 2011)2, and of course, in December, on the International Day for Persons with Disabilities. This issue was treated to a little extent or not at all during the other months. When talking about the disability issue, one must indicate that the broadcasted programmes are not available and accessible to the persons with disabilities, and they frequently treat this issue in a stereotype manner. Synchronisation of various imported movies is good for the persons with impaired vision, but is not doing any favours to the persons with impaired hearing. Subtitling, at least of the programmes of public interest, should complement the synchronisation so as to enable content availability for all citizens. The single media company offering programmes in sign language is the national public service MRT. However, such programmes for persons with disabilities are broadcasted only on Sundays, on uninteresting and limited topics, and the same are underrepresented for a category of citizens which is not that small. Entertaining and game shows and their availability to the citizens with disability is a completely different problem. Wheel of Fortune, Dzandar zbira, Easy Money, All or Something, CASE are game shows which appear to be intended only to the citizens withDuring the period 2009-2010, the VECHER out disabilities. The awareness that newspaper contained a special column for the other citizens are equally entitled to VULKAN Plus topics which was not an obparticipate in them is at a very low jective by itself, but an instrument for building a different view towards the world around us. level. On the other side, the radios The topics also contributed to that; the same are no more advanced than their were not exclusively related to the persons colleagues. The same continuously with disabilities, since these were not articles broadcast all sorts of information, that limited the readers or the interest in the articles, but articles that served as first appeal to but only the Macedonian Radio, the awareness of the non-marginalised reading Radio 2, designates part of its proaudience, superficial motivation and a reason gramme scheme to the treatment of for that audience to ask themselves about what this issue through the radio show are they undertaking in their closer or wider Pantarei, organized by the Union environment in terms of removing the barriers that are so unbridgeable, limiting and exclusive of Blind People. for the persons with disabilities. The situation in the printed meZoran Dodevski, dia does not differ much. Producer During the previous years, disabili-

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Polio Plus reasearch about the media attitudes toward disability questions for a period (2010 - 2011)

Disability - the missing puzzle piece

ty organisations and the organisaCONVENTION tions of persons with disabilities have issued their monthly magaTo enable persons with disabilities to live indezines which were distributed to pendently and participate fully in all aspects of their members and institutions. life, States Parties shall take appropriate measThe Union of Physically Disaures to ensure to persons with disabilities access, on an equal basis with others, to the physical bled Persons issues its informaenvironment, to transportation, to information tion magazine Fenix 86, The and communications, including information and Centre for support of the intelleccommunications technologies and systems, actually disabled persons Poraka cepting and facilitating the use of sign languages, issues its own magazine every Braille, information and communication techthree months under the same nologies in accessible and usable formats for name. The magazine for persons persons with disabilities, and promoting design with disabilities Vulkan, prefor all. viously issued by Polio Plus, (who didnt have any state support) is not being issued for 6 years already. Other headings, columns or initiatives by the printed media in terms of promoting the fight of human and his imperfection are non-existing, except in incidental cases, on the occasion of the relevant Day or upon an initiative of the organisations. The disability issue is also popularised on the online forums and the social networks, but as a medical treatment issue. Programmes, newspapers, websites promoting the disability issue, are necessary to be introduced. The existence of the monthly magazine Vulkan was a positive example, as well as the headings in the Vecher newspaper entitled Vulkan Plus.
proposed measures

Improvement of the Broadcasting activity legal frame One should consider the expansion of programme schemes of the media which shall be available to all viewers. It is necessary, at least during the pre-election period, to take into consideration the availability of information related to political parties, in various forms, so that they could reach all potential voters. Education and training of journalists on the disability issue and the manner of its presentation through other areas Preparation of strategies on equality in the media companies.
LINKED Education; Accesability; Services for support; Legislation; Employment; Social welfare Helth protection; Justice;Non discrimination;Deinstitutionalisation;Legal capacity; Public awareness;
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4.9. Public Awareness


Macedonia is too smallm to give up the contribution of any of its citizens, even the ones with disability
Terens Harvi

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Public awareness is a sum of individual positions or opinions on a certain problem. Ever since the 50s, television has become a key actor in terms of public awareness creation, taking the primacy of printed media and movie journals; however, the new century noted increased influence of the Internet and the social networks (the latest example is their role in the Arab spring). Nevertheless, the media have created (and are still creating) various methods and techniques on the impact and change of the population public awareness, especially in the political sphere. When talking about the public awareness in Macedonia regarding the disability as phenomenon and the relation of the general population towards persons with disabilities, there are two positions and two periods that interlace and slowly assimilate one into another. This mainly refers to the following of the disability relation matrix which historically imposes the traditional and medical model with the latest social model challenge and the view that disability is a human rights issue. The approach towards the public opinion determination studies, and with that, of the public awareness, differs, but in methodological terms the quantitative measuring or polling is obligatory. Unfortunately, Macedonia has no sufficient data on public opinion measuring for the disability phenomenon till the beginning of the new millennium. The professional and medical works and opinions treating the disability in medical and diagnostic terms are not included here. Several researches measuring the citizens perception of the persons with disabilities mark the new millennium. Their main characteristic is that they are fragmented, with uncoordinated methodology, insufficient expertise and dependant on the objectives and the frame (both in time and financial terms) of the relevant project within which they are made. This most definitely complicates the comparison of the situation and the comparative data analysis. However, regardless of the stated adverse aspects, one can still obtain the main idea on the existing public awareness level towards the persons with disabilities in the Macedonian society. In 2005, Polio Plus conducted a survey Lets ask ourselves together in order to obtain an insight in the situations and opportunities for inclusion of persons with disabilities in the society (representative sample of 1.686 respondents). The question whether persons with disabilities are marginalised category of citizens in our state was answered as follows: 67% of the respondents believe that acDisability - the missing puzzle piece

Dijagram no.11 are persons with disabilities are marginalised category of citizens in our state?

cording to the position and status in the society, persons with disabilities are completely marginalised. Out of these 67%, 47% believe that there is complete marginalisation in all social living areas, and 20% believe that not much can be done regarding the marginalisation. Only 4% believe that there is no marginalisation. Having in mind the answers to the previous question, the question Whether persons with disabilities exercise their civil rights? was answered as follows: 56% of the respondents believe that their rights are not exercised at all, but on the contrary, these are citizens of second-class citizens. Finally, the key question on the public awareness topic in this research was Is the community open to the problems of the persons with disabilities?. 7% of the respondents said that the community is fully opened, 35% believe that it is open in certain situations, 44% believe that it opens on the basis of certain needs, and 13% of the respondents believe that the community is fully closed for the persons with disabilities. The research Macedonian society inclusiveness, conducted by FIOM in 2008, represents a much deeper research (on specific issues) and compared to the other categories of marginalised groups. Only 15.5% of the respondents gave positive answers to the question Would you accept you or a member of your family to be married to a person with physical PARADOX disability?. The percentage is reduced to 3.7% DONATIONS IN A DEAD END for the sub-question relating to a Notwithstanding the fact that the government person with intellectual disability. passed a Strategy for de-institutionalization and a ban on admission of new patients in SH And this is the end of the story on Demir Kapija, the donation made by Kosmothe 42% community openness perfon and the Dutch Embassy for the construction ception obtained from the previous of a park and a playground on the ground of the research. It is clear that a lot of emoinstitute in the amount exceeding EUR 50000 was received with great joy. tions are associated with family reThe question still remains For whom?. lations. Everyone wants the best for their children.
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Diagram no.12 Is the community open to the problems of the persons with disabilities?

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However, the other domains issues are also not much affirmative. For example, 52.5% of the respondents would not vote for an MP with physical disability, and 54.5% would accept such a person as their job position superior officer. These results are at least disturbing and directly refer to the strong reflection of the so-called NIMBY effect. Nevertheless, in many categories, at least according to the research, persons with disabilities are in a better situation than other marginalised groups such as drugs and alcohol users, sexual workers, Roma, etc. The direct public awareness impact actions produce effects. This is continuously carried out in Macedonia in the new millennium, although not in an organised and coordinated manner. One should not bypass the indifference of the international foundations and organisations which often support promotional activities for the purposes of noting their presence without taking into account the true effect and the money and support conformity. Public awareness raising campaigns for disabilities were organised by MIA (Lets find the human, 2000), STILM (Happiness is their right, 2001), Blagovestie with the humanitarian concerts 1999-2002, MLSP in 2006, PARADOX Aerodrom municipality (Be human NIMBY IN MACEDONIA help 2009-2011); as well as Polio NIMBY is an abbreviation of the English term Not In Plus with the extensive campaigns My Backyard. (Let us be honest, 2002; Nobody Although during the surveys on general discriminais perfect, 2003; My signature is tion issues, the Macedonian citizens generally perceive law, 2005; Parking space named themselves and state that they are tolerant and non-discriminatory, when the relevant problem comes closer desire, 2005 and 2011). to them, in their neighbourhood or family, they transBesides of these focused campaigns, form from Dr. Jekyll into Mr. Hyde. there are a number of other public Only 3.7% of the respondents would not mind having events and initiatives intended for a son-in-law or a daughter-in-law with intellectual disabilities. this target group.
Disability - the missing puzzle piece

One should note that such actions unnecessarily promote the charity TENANT PETITION and compassion model, and it has During the deinstitutionalisation process of the dependants of the SZ Demir Kapija, small to be mentioned that, because of the group homes in rented apartments were estabmedia support, the events are usulished in 2008. Such an apartment was rented ally focused on the marking of 3rd in Negotino. The owner of the apartment had no December, the International Day of problem whatsoever with the fact that persons Persons with Disabilities. with disabilities live in his apartment. However, the Tenants Association of the building PartizanOf course, one must not bypass the ska No 2 submitted an official letter of protest criticism that such events, donations not to allow it and threatened that, in terms of deand teletons, with financial requirefending the safe housing (whatever they mean by ments, often end in private pockets, that), they shall apply all legal measures!? on behalf of the persons with disabilities. Cases of abuse of the telephone companies donation numbers only confirm the previous. Regardless of the anomalies, the lessons learned are worth mentioning, which teach us that public awareness cannot change suddenly and with just a single activity, and that the same should be continuously maintained in various aspects and supported by various actors. The stereotype commercial campaigns and humanitarian concerts are most definitely not sufficient, and are also contra-productive.
proposed measures

CASE

Initiatives of efficient public awareness campaigns intended for: Encouraging the respecting of the rights of persons with disabilities; Development of positive perceptions and increased awareness for the persons with disabilities; Development of the recognition of skills, credits and opportunities of persons with disabilities and their contributions; Encouraging all media bodies to present persons with disabilities in a manner consistent with the objectives of this Convention; CONVENTION Promoting awareness raising training States Parties undertake to adopt immediate, programmes relating to the persons effective and appropriate measures: to raise with disabilities and for the rights of awareness throughout society, including at the person with disbailities;
LINKED Education; Accesability; Services for support; Legislation; Employment; Social welfare; Helth protection; Justice; Non discrimination;Deinstitutionalisation; Legal capacity; Media
the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities; to combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life; To promote awareness of the capabilities and contributions of persons with disabilities.

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4.10. Monitoring mehanizm


In the country of the blind the one eyed man is king
Sv. Erazmo

Unlike other human rights treaties, the CRPD prescribes the national mechanisms for implementation and monitoring and their functions (art 33). At this, it conceptually separates implementation from monitoring and assigns these two responsibilities to distinct entities: implementation to the Government and the monitoring to independent entities. CRPD requires the State to set up a structure of three mechanisms. First, for matters relating to implementation, the State has to designate one or more focal points within the government ministries; and second, to give due consideration to establish or designate a coordination mechanism within the government that would facilitate action across sectors and at different levels (art 33.1). Third, the State has to establish or designate a monitoring framework which must include one or more independent mechanisms as per international principles relating to National Human Rights Institutions (Paris Principles). Civil society and in particular persons with disabilities and their organizations have to be involved and participate fully in the monitoring process (art 33.3). Setting the national implementation and monitoring structure is among the first steps to be taken around or after the CRPD ratification. A wider national debate should take place to ensure that the national structure reflects CRPD in both letter and spirit and that it has adequate capacity and resources. The debate should re-consider existing mechanisms, such as those that may have been set under the Standard Rules, and all the actors who may have a role under CRPD. It is essential to note again that persons with disabilities and civil society need to be involved throughout the process, in line with the principle of participation that permeates CRPD (art 3, 4, 29, 30 and 33). Initial guidance on the matter is available from the United Nations Office of the High Commissioner for Human Rights which provides Secretariat to CRPD, through, among the other, the thematic study issued in 2009. The Government implementation structure The focal points could be established at each or most relevant government ministries. They could be mandated to promote awareness of the CRPD within the
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ministry, participate in the development of a CRPD action plan and monitor and report on the implementation within their functional lines. This structure resembles the system of gender equality focal points that the country has established at both central and local government levels. For greater effectiveness, it is advisable to appoint both the focal points at the ministries and one overall focal point within the government to perform a general oversight and promotion role. The overall focal point will not implement but focus on developing and coordinating a coherent national policy on the CRPD. It should be mandated to promote, guide, inform and advise government on matters related to CRPD implementation and may also serve as liaison with the independent monitoring framework and channel for communication with civil society and organizations of persons with disabilities on the matter. As for the placement of the overall focal point, the paradigm shift suggests avoiding the ministries of health, social policy or special education units and placing it at the ministry of justice or human rights. As a greater leverage is required too, ideal is to place it at the hearth of the government, for example at the Prime Minister or the government cabinet, similar as the country has done for the Roma Decade. Whatever the solution, it is essential that the focal point has adequate staff and resources. For economy of resources, the support may be provided through large ministries, provided that they explicitly recognize the independence of the focal point structure from the parent ministry. The independent monitoring framework The independent monitoring framework should promote and protect and monitor the CRPD implementation. Its main function is to evaluate the results and provide feedback for the implementation. The Convention does not prescribe the organizational form of the framework and leaves the State to decide on it in line with the local context. There are however three key requirements for the monitoring framework: - It must include at least one independent entity functioning under the Paris Principles which require independence guaranteed by statute or constitution; autonomy from government; pluralism, including in membership; a broad mandate for promotion and protection based on universal human rights standards; adequate resources; and adequate powers of investigation. - It needs to be given an adequate mandate and the institutional capacity required to effectively perform its functions - Civil society and in particular persons with disabilities and their representative organizations need to be involved and fully participate in the monitoring process.

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The framework may include a single independent entity, more than one independent entity, or be a network of various actors of which one is independent. The experience so far is that most of the states designated the function to a single entity rather than a network. It is essential that the framework is designated through a wide national consultation. This will ensure informed decision based on common understanding of the monitoring functions and of the mandates and capacities of potential actors. It will also help align independent entities and eventual other actors with the requirements set to ensure effective promotion, protection and monitoring.
LINKED Education; Accesability; Services for support; Legislation; Employment; Social welfare Helth protection; Justice; Non discrimination; Deinstitutionalisation; Legal capacity; Media Civil Society

KONVENCIJA
Article 33 of the Convention regulates the process of monitoring of the implementation of the principles of the Convention and requires from the State Parties to establish mechanisms for implementation and monitoring of the Convention at the national level. 1. States Parties, in accordance with their system of organization, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels. 2. States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States Parties shall take into account the principles relating to the status and functioning of national institutions for protection and promotion of human rights. 3. Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.

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In closing...
I do not feel obliged to believe that the same God who has endowed us with senses, reason, and intellect has intended us to forgo their use
Galileo Galilei

Every sound report should finish with a short account of the lessons drawn and recommendations for future actions. We fail to observe the rule in this case for two reasons: Recommendations for action have been moved to the end of the chapters covering thematic areas so that we would not depart from the context of the topic under discussion. We did not want to repeat ourselves and waste expensive pages unproductively. It goes without saying that there is a need of aggregate and comparative recommendations for action, but that goes beyond the challenge this report has faced. The challenge was to put together an exhaustive though just a basic account of the situation with which disabled persons in Macedonia are faced in light of the recent ratification of the CRPD, with emphasis on bottle necks and need of urgent action. Lessons drawn should be translated into a strategy and an adequate action plan, but that will have to be done in a joint effort with a number of actors and institutions in charge. And that is a challenge brought to us by the coming days... In closure, we want to extend our apology to all those who have acted in this field and are not mentioned in the report. some though have been mentioned in a negative context. But, no one is perfect. some omissions have undoubtedly been made, some priorities stressed and some generalizations made. We wanted to present as realistic a picture as possible, though the landscape is still a subjective one. And we stand behind it firmly! The time will judge on everything.

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Title: Disability - the missing puzzle piece. Baseline rewiev of the situation of people with disabilities in Macedonia (2012) Publisher: Polio Plus movement against disability For the publisher: Zvonko Shavreski Graphic design and technical preparation: OZ Design Skopje, Republic of Macedonia Print: Sofia - Bogdanci, Republic of Macedonia Production: 2012

CIP - catalogue: National and University Library St. Climent Ohridski, Skopje, Republic of Macedonia DISABILITY - the missing puzzle piece. Baseline rewiev of the situation of people with disabilities in Macedonia,- Skopje: Polio Plus, 2012. - 133 str.: graf. prikazi; 23 sm ISBN 978-608-4608-08-0 COBISS.MK-ID 92719370