REPORT Mapping of Disability Persons Organisations , December 2014

CONTENT

ЕXECUTIVE SUMMARY ...... 2

1. INTRODUCTION ...... 3

2. METHODOLOGY...... 4

3. LIMITATIONS ...... 6

4. FINDINGS ...... 7

3.1. Extent to which organisations exist in different areas and for different impairments ...... 7 3.2. Organisations’ understanding of disability ...... 10 3.3. Extent to which organisations are linked or connected to other organisations ...... 14 3.4. Organisations’ capacity for raising awareness, advocacy and social mobilisation ...... 17 3.5. Availability and type of services to children with disabilities and profile of users ...... 24 3.6. Availability of data and systems used to collect data on children with disabilities ...... 28 4. CONCLUSIONS ...... 30

5. RECOMMENDATIONS ...... 33

ANNEXES (separate documents)

1. Annex 1: Interview Protocol 2. Annex 2: Organisations’ general and contact information 3. Annex 3: Interviewed organisations 4. Annex 4: Planning regions

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ЕXECUTIVE SUMMARY

In the period September – October 2014, UNICEF undertook the mapping of disability related civic organisations and informal groups in to better understand their knowledge, attitudes and practices towards inclusion of children with disabilities. Open the Windows, a Skopje-based civic organisation, was contracted and conducted this task. Methodology-wise, the mapping exercise combined two research methods: 1) online and phone research to identify as many as possible relevant organisations and informal initiatives working with children with disabilities, and 2) interviews with selected organisations and informal initiatives to collect in-depth information. A total of 136 relevant civic organisations and informal initiatives were identified. In addition, 23 state-funded and run day-care centres were included in the list, which provide services to children and youths with disabilities. However, the study recognizes that there might be other organisations that have not been identified. Disability-related organisations exist in all eight planning regions of the country. Their geographical distribution is not equitable: the and North-eastern regions have in particular lesser number of disability-related organisations. Not a single organisation is headquartered in an urban settlement. Almost all organisations (except for one) working on autism and learning difficulties are located in Skopje. Interviews were conducted with 32 civic organisations and 1 day-care centre throughout the country. Geographical and representation per disability type was observed: These organisations generally include persons with disabilities in their governance bodies and as volunteers, but to a lesser extent among their staff. Few organisations have formal internal affirmative procedures and policies. Almost all organisations apply a participatory approach in determining their beneficiaries’ needs and planning their activities. Organisations use different terminology for “disability”: “special needs” and “disability” are most commonly used. Organisations are aware of the benefits of networking and inter-organisational cooperation. However, in reality, there are no networks or large joint initiatives for advocacy or awareness raising. Cooperation with public institutions is assessed as positive, in particular with local institutions, which more often provide public funding for the organisations. Most organisations implement initiatives to promote the inclusion of children and persons with disabilities. Some of these initiatives directly promote the Convention on the Rights of Persons with Disabilities. Organisations use a variety of methods in doing so: awareness raising, advocacy, service provision, capacity building of other actors, etc. The implementation of the Convention and improvement of the educational system inclusiveness are most widely recognised common advocacy issues. Less than one-third of the interviewed organisations felt that they have adequate capacity to monitor children’s rights. The organisations provide a variety of services for their beneficiaries, which are free in almost all cases. Beneficiaries are involved in the evaluation of the organisations’ services. Majority of organisations conduct research works and systematically collect data on children and persons with disabilities. Collected information are mainly used for planning and advocacy, but not in a manner that helps diminish the existing lack of official statistical data related to disability. Recommendations aim at profiling organisations as change agents and advocates for adequate implementation of the Convention on the Rights of Persons with Disabilities and other binding international documents. Organisations should develop into role models for other societal actors concerning the inclusion of children and persons with disabilities. Improvement of the inter-organisational cooperation and networking is an essential step for the success of the abundant, but isolated and separate efforts of the organisations.

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1. INTRODUCTION

This report presents the key findings, conclusions and recommendations of the mapping of disability related civic organisations and informal groups in Macedonia. In 2011, the country has ratified the UN Convention on the Rights of Persons with Disabilities and the corresponding Optional Protocol (CRPD). The government has since initiated measures to ensure that the embedded principles and rights are implemented. These efforts attempt to change the currently predominant perception of disability through ‘special needs’ and ‘defectology’ into a wider societal response based on the social paradigm of disability. Among other international actors, UNICEF is supporting the government in introducing policies and practices in health, early childhood development, education, and child protection, which are in line with the CRPD, the Convention on the Rights of the Child, and the International Classification of Functioning, Disability and Health – Children and Youth. UNICEF seeks to contribute to overcoming social, environmental, and attitudinal barriers that prevent children with disabilities from taking up their rightful place in the society. Civic organisations and informal groups working on disability and/or with children also carry out initiatives to support the implementation of the above-stated international documents. While civic actors are yet to develop a unified and coordinated national advocacy or awareness raising initiatives, numerous organisations base their actions on the social model of disability and succeed in piloting new types of support for children with disabilities. To complement these broad public and civic sector efforts, UNICEF plans to support a communication initiative to increase awareness about the rights of the children with disabilities. As part of this, UNICEF also plans to work with civic organisations to build the capacity of right holders to undertake the role of change agents and promote self-advocacy. In this context, UNICEF undertook the mapping of civic organisations and informal initiatives to better understand their knowledge, attitudes and practices towards inclusion of children with disabilities. Through an open request for proposal, UNICEF contracted Open the Windows, a Skopje-based civic organisation focused on promoting assistive technologies, for the task. The mapping was conducted in the period September – October 2014.

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2. METHODOLOGY

The aims of the mapping assignment were to: - Map the extent to which organisations exist in different areas and for different impairments, and identify geographic and other gaps; - Assess the organisations’ understanding of disability (which model of inclusion they apply in their advocacy efforts and work); - Assess the extent to which organisations are linked or connected to other organisations, whether and how they share information, support advocacy and lobbying efforts, share resources, and other support; - Assess organisations’ capacity in terms of raising awareness, advocacy and social mobilisation; - Map the availability and type of services to children with disabilities and profile of users (focusing on children); and - Map the availability of data and systems used to collect data on children with disabilities. Two main research methods were used to collect information: - Online and phone research was used to identify and list as many as possible relevant organisations and informal initiatives working with children with disabilities in the country; - Interviews were conducted to collect in-depth information from selected organisations and informal initiatives. The used interview protocol is attached in Annex 1. A total of 136 civic organisations and informal initiatives were identified to be active in the field of inclusion of persons with disabilities, including children. In addition, the state runs (through the Ministry of Labour and Social Policy) a total of 23 day-care centres for person with disabilities throughout the country, and which provide services to children and youths with disabilities. All are listed in Annex 2: Organisations’ general and contact information. Out of the 136 identified organisations and informal initiatives, a total of 32 were interviewed to discuss in depth their knowledge, attitudes and practices towards inclusion. These organisations were jointly selected by UNICEF and Open the Windows, based on their relevance and observing adequate geographical and representation per disability type. In addition, one state-run day-care centre was also included in the interviews, as there was lesser number of organisations that were identified and provided services in the respective region. Thus, the total number of interviewed actors was 33. Annex 3 presents the Interviewed organisations. Obtained data were processed and quantitatively and qualitatively analysed. This report presents the key findings for each of the six main aims of the mapping assignment. Geographical and distribution of organisations per disability type is presented on the basis of the online research and phone interviews. The eight planning regions in the country as per the Law on Equitable Regional Development were used as a basis in determining the geographical distribution of organisations. The planning regions are presented in Annex 4. Secondary sources of information were also used and clearly indicated throughout the report. These include data on the number of children with disabilities receiving special child allowance (i.e. social welfare support for children with disabilities) disaggregated per

Page 4 of 30 planning region, as well as information from the Ministry of Labour and Social Policy on the state-run day-care centres. Findings within all other aims of the mapping are based on the data obtained through the interviews. As noted above, 33 organisations were interviewed, representing almost a quarter of all identified organisations. Bearing in mind that the selection was made observing geographical and representation per disability type, the sample of interviewed organisations is highly representative. Open the Windows conducted the mapping. The responsible team included: Vladimir Lazovski, Magdalena Dimkova Velevska, Olga Samardzic Jankova and Marija Velinovska, who are also the authors of this report. UNICEF provided guidance and consultancy support throughout the process including valuable input in structuring this report, improving its content and presentation of the key findings, conclusions, and recommendations.

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3. LIMITATIONS

While the study aims to capture details of all organisations and informal initiatives operating in the country it recognizes that there may be other organisations that have not been identified. Furthermore, many of the findings are based on interviews with a sample of organisations, which, as noted above, was representative in terms of geographical and distribution per disability type. As such, the study does not provide a complete overview of services and activities provided by all organisations in the country and it can serve as a basis for undertaking additional research. During the interviews, most organisations were open and provided the requested information. However, their answers in particular to questions of sensitive organizational nature (such as, for example, of financial nature or describing their experiences in cooperation with other organisations or institutions, their achievements and lessons learnt, etc.) could have been impacted by the fact that the interviews were conducted by an organisation that also works in the field of disability. To diminish this potential risk, the interviewers explained that the research was conducted on behalf of UNICEF and stressed confidentiality. Limitations of information provided from secondary sources are indicated in the respective sections of this report.

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4. FINDINGS

3.1. Extent to which organisations exist in different areas and for different impairments The researchers identified 136 civic organisations and informal groups in the country that are active in the field of inclusion of persons with disabilities. In addition, the Ministry of Labour and Social Policy runs 23 day-care centres throughout the country1, which provide services to children and persons with disabilities. The list of all identified entities is enclosed in Annex 2. Table 1: Number of analysed entities per type Type of entity Number Association 127 Foundation 1 Informal group (civic initiative) 8 Day-care centre 23 Total 159 The terms ‘association’ and ‘foundation’ are used for legal entities registered as per the Law on Associations and Foundations. Overwhelming majority of associations (123 of 127) are associations of persons with disabilities (that are established and run by persons with disabilities themselves) and associations for persons with disabilities (that are established and exclusively work to promote the rights and inclusion of persons with disabilities). Two associations are entities that include disability among other organisational goals and priorities (My Career and the Macedonian Montessori Association2); one is a professional (Association of Special Educators of Macedonia) and one is a scientific association (Macedonian Scientific Society for Autism). The only identified relevant foundation (the Apollonia Foundation from ) includes disability among its organizational priorities and objectives. State-funded day-care centres (23) are presented in accordance with the latest available information from the Ministry of Labour and Social Policy as of December 2013. Informal groups were identified through personal and professional contacts and/or groups’ Facebook activities and presentations. It has to be noted that listed associations include the national unions of persons with disabilities (organized per type of disability), which are the country’s oldest formal disability- related associations established during the socialist regime. In line with the legacy from the previous system, these organisations remain the only beneficiaries of public (state) institutional funding from the fund of lottery and other games of fortune. Listed are: - National Union of Persons with Physical Invalidity – Mobility Macedonia (with 16 branch office throughout the country), - Republic Center for Support of Persons with Intellectual Disability – PORAKA (with 17 branch offices), - Union of the Blind Persons of Macedonia (with 17 branch offices),

1 As per the last available data from December 2013. 2 The original names in of all organisations mentioned in this report can be found in Annex 2.

Page 7 of 30 - Association of the Deaf and Hard of Hearing of Macedonia (with 18 branch offices), - Federation for Sport and Recreation of Invalids of Macedonia (with 19 branch offices). These five unions form the National Council of Disability Organisations of Macedonia, together with the Association of War Invalids of Macedonia and the Union of Labour Invalids of Macedonia. The last two were not listed as they exclusively work with adults and not with children, which was the focus of the mapping. The identified civic organisations and day-care centres come from all eight regions in the country. Most come from the Skopje region (33), while the least organisations operate in the Polog and the North-eastern regions (11 each). The 8 informal groups are mainly active on Facebook and attract members nation-wide and are not included in this analysis of the geographical distribution.

Table 2: Number of organisations per planning region Region Number of organisations Skopje 33 South-western 22 Pelagonija 21 20 Eastern 18 South-eastern 15 North-eastern 11 Polog 11 Total 151 In order to obtain more relevant picture of the geographical distribution of organisations, these data were cross-analysed with the number of beneficiaries of special child allowance (the disability benefit awarded to children) disaggregated per planning region. These data were provided by UNICEF as of October 2014. Due to the lack of official and comprehensive statistical data on the number of children with disabilities in the country, these data are used for illustration purposes only with the following limitations: - not all children with disabilities are recipients of the special allowance, , and - special child allowance is awarded to children and youths with disabilities up to 26 years old (thus, not all recipients are children).

Table 3: Distribution of recipients of special child allowance (SCA) per organisations Region SCA recipients/organisations No. of SCA No. of ratio recipients organisations Vardar 27.7 554 20 South-western 31.6 696 22 Eastern 32.4 583 18 South-eastern 33.2 498 15 Pelagonija 41.0 862 21 North-eastern 59.1 650 11 Skopje 61.9 2,042 33 Polog 73.3 806 11 Total 44.3 6,691 151 This illustrative cross-analysis clearly changes the picture of the geographical distribution of organisations in the eight planning regions: For example, most organisations, in terms of absolute number, are located in the Skopje region, which has the second lowest number of

Page 8 of 30 organisations per recipient of special child allowance – well below the national average. It is likely that the fact that many public institutions offer support and services to children with disabilities in the capital Skopje mends this unfavourable situation. However, the cross- analysis confirmed that there are less organisations working with children with disabilities in the North-eastern and Polog regions, indicating lesser level of available support and services. In terms of the type of disability, most organisations work with persons and children with disabilities in general. Organisations exist that are specifically focused on all main types of disabilities, with most working with physical, intellectual and sensorial disabilities. Most of these organisations are branch offices of the above-mentioned national unions organised per type of disability. Learning difficulties are focused upon to a lesser extent: only one organisation was identified that specifically worked with children with dyslexia (and not other learning difficulties). Table 4: Number of organisations per type of disability Type of disability Number of organisations Persons with disabilities in general 40 Persons with intellectual disabilities 24 Persons with intellectual of physical disabilities (combined 24 difficulties) Persons with physical disabilities 20 Persons with impaired vision 19 Persons with impaired hearing and speech 19 Persons with autism (autistic spectrum of disorders) 3 Learning difficulties: dyslexia 1 Professional organisation 1 Total 151 Concerning the informal groups, four focus on autism (with one including ADHD and Asperger’s Syndrome), two provide support to children or persons “with special needs”, one aims to support the education of children “with special needs” and one supports the inclusion of “blind persons”. Skopje is the only region where organisations exist that work with persons with all types of disabilities. The adequate geographical distribution of organisations focusing on persons with intellectual and physical disabilities, as well as impaired vision and hearing and speech, is predominantly the result of the existence of the branch offices of the national unions organised per type of disability. On the other hand, there is only one organisation focusing on autism and none that works that works with learning difficulties out of the Skopje region. Table 5: Number of organisations per type of disability in the eight planning regions Number of organisations per planning region Type of disability SKO SW PEL VAR EAST SE NE POL Disabilities in general 16 3 5 4 3 4 2 3 Intellectual disabilities 4 3 3 3 4 3 3 1 Intellectual and physical 4 3 4 3 5 1 2 2 disabilities Physical disabilities 2 4 3 3 2 3 2 1 Impaired vision 2 4 2 4 2 2 1 2 Impaired hearing and speech 1 5 3 3 2 2 1 2 Autism (autistic spectrum) 2 - 1 - - - - - Learning difficulties: dyslexia 1 ------Professional organisation 1 ------Total 33 22 21 20 18 15 11 11 As noted above, the informal groups could not be geographically located, as they attract support from all over the country, due to which these groups are not part of this cross-

Page 9 of 30 analysis of type of disability and geographical location. However, the fact four of the eight identified informal groups specifically deal with autistic spectrum disorders indicates the need for additional support to be provided for this type of disability. Concerning the types of activities, significant majority of the organisations are involved in provision of services, followed by informing (in terms of awareness raising), and advocacy with relevant authorities and institutions aimed at improving legislation and policies at national and local level. Capacity building of other relevant actors is within the scope of the majority of organisations. Research and provision of humanitarian aid are the least implemented type of activities, while not a single organisation disburses grants to other organisations or initiatives. This illustrates that disability-related organisations are increasingly undertaking their development and change-agent roles and generally prefer the human-rights based approach over charity.

Table 6: Number of organisations per type of activity Type of activities Number of organisations % Provision of services 128 84.8% Provision of information (awareness raising) 109 72.2% Advocacy 104 68.9% Capacity building (of other actors) 90 59.6% Research 39 25.8% Humanitarian aid 22 14.6% Granting - - Total 151 / As can be seen from the table, most organisations are engaged in more than one type of activities. It has to be noted that the research was neither designed, nor included looking at any quantitative or qualitative aspects of the organisations’ activities, or the impact thereof. Informal groups were not analysed in this regard, as the available information were scarce to precisely determine the type of activities that they conduct. However, the impression is that most of them act as support groups, which also undertake the role of mobilising public and citizens’ support for inclusion of children and persons with disabilities in general. There are no significant differences between the planning regions in terms of the types of activities that the organisations conduct. In the region of Polog, not a single organisation is engaged in humanitarian aid delivery to persons and children with disabilities, which confirms the finding stated above that this region is where disability-related organisations are less present.

3.2. Organisations’ understanding of disability The organisations’ understanding of disability is reviewed through assessment of the involvement of persons with disabilities, or their parents and guardians, in the organisations’ everyday work, needs identification, and the terminology they use and favour. These aspects indirectly present the extent to which the organisations implement the social model of disability and the human rights approach in their work. This part of the analysis refers only to the 33 interviewed organisations (see section: 2. Methodology for details). Most interviewed organisations (27) include persons with disabilities or their representatives (parents or guardians) in their governance boards.

Page 10 of 30 Table 7: Representation of persons with disabilities or their representatives in governance boards Description Number of organisations Persons with disabilities participate in governance bodies 27 Persons with disabilities do not participate in governance bodies 6 Total 33 The six organisations do not include persons with disabilities. The reasons were different in each of the organisations: they “cannot” involve persons with disabilities in their governance, as the organization “works with persons or children with intellectual disabilities;did not “know of any expert with any type of disability who professionally focused on autism and expressed interest to join”; they needed to change their current statute to ensure the participation of persons with autism in their governance board, failing to provide further explanations; that persons with disabilities were only one of their target groups and were currently not represented in the governance structures. Thirteen of all 33 interviewed organisations reported having employees; the remaining 20 organisations did not employ anyone. In 6 organisations, the staff included at least one employee with disabilities; 7 organisations’ staff only included persons without disabilities. Table 8: Organisations, employees and employees with disabilities Description of organisations Number of organisations Do not employ anyone 20 Have permanent staff, but without persons with disabilities 7 Have permanent staff, including at least one person with disabilities 6 Total 33 Five provided explanations as to why they did not employ persons with disabilities: they could not afford hiring anyone, with or without disabilities, due to “financial instability”; not a single person with disability had applied for their publically advertised vacancy, despite the encouragement; they had experienced problems identifying a person with disabilities with the “needed qualifications”; however, the organisation had used the services of a person with physical disability within a “particular project activity – website maintenance”; . that persons with intellectual disabilities who are beneficiaries of the newly established and state funded community-based supported housing services faced “legal issues” concerning employment - namely, beneficiaries of community-based housing services and residential institutions would lose the right to these services, if employed. Table 9: Organisations and employment of persons with disabilities Organisation Number of Number of employees Formal affirmative employees with disabilities procedures and policies Foundation Apollonia 2 1 no Union of the Blind n/a 22 no Persons of Macedonia National Union of Persons n/a 1 yes with Physical Invalidity – Mobility Polio Plus 3 2 yes Parents Resource Centre 3 1 no Poraka 27 1 no Only three organisations had internal procedures or policies on equal employment opportunities: In addition to the two presented in the table above, Poraka Nasa from also had such internal documents, despite not hiring a single person with disabilities. In the case of Polio Plus, the employment procedures are affirmative in terms of gender and ethnicity, as well.

Page 11 of 30 An overwhelming majority of organisations (29 of 33) engaged volunteers to realise their activities; 21 organisations used the support of volunteers with disabilities. On the other hand, most organisations (27) did not have specific affirmative procedures and policies to attract volunteers with disabilities. The six organisations that have formal affirmative approach towards volunteering are: National Union of Persons with Physical Invalidity – Mobility Macedonia, Polio Plus, Association of Students and Youths with Disabilities, Republic Center for Support of Persons with Intellectual Disability – PORAKA, Handicap Plus, , and Special Olympics Macedonia. The internal documents that regulated this issue were “encouraging statements in the statute” and “other general acts”. Table 10: Organisations and volunteers with disabilities Description Number of organisations Total interviewed organisations 33 Organisations engaging volunteers 29 Organisations engaging volunteers with disabilities 21 Organisations with affirmative procedures and policies on 6 volunteerism Nine organisations provided additional explanations as to why they did not engage volunteers with disabilities, most of which stressed that persons with disabilities were passive, inactive and “introvert”. Three organisations stated that they did not run activities that required the involvement of volunteers. Regarding the involvement of persons with disabilities in needs identification and setting up organisational priorities, most organisations stated that beneficiaries, i.e. persons with disabilities were directly involved in the planning, designing and implementation of their strategies, projects, and activities. Also, almost all other organisations use participatory approach to determine the needs of their target group. Table 11: Involvement of persons with disabilities in needs identification Description Number of organisations Our target group representatives are directly involved in the planning, designing 14 and implementation of their strategies, projects, and activities Our organisation knows very well the needs of our target group 7 We maintain regular communication with our target group, through which we 6 learn of their needs We collect data and conduct research work to identify the needs of the target 5 group We follow donor’s agenda and relevant governmental policies - Other 1 Total 33 The Day-care Centre Vinica was the only organisation that said it followed the programme for work developed by the Ministry of Labour and Social Policy (listed above under “other”). This is no surprise as the centre is an organisation that works under the auspices of the Ministry. Regarding terminology, most organisations pointed out that “persons with special needs” and “persons with disabilities” were the most appropriate terms for referring to persons with disabilities. Other terms in use include: “persons with handicap”, “persons with invalidity”, “invalid persons”, “children with atypical development”, and “children with developmental difficulties”3.

3 Respectively: лица со посебни потреби, лица со попреченост, лица со хендикеп, лица со инвалидност, инвалидни лица, деца со атипичен развој и деца со потешкотии во развојот.

Page 12 of 30 Several organisations argued that the use of the term “persons with special needs” is the most appropriate as it indicated the need for modifications, adaptations, and provision of access to ensure active participation of persons with disabilities in the society. In addition, several interviewees argued that this term is not labelling as “all persons have special needs”. The Regional Centre for Persons with Intellectual Disabilities – Poraka Nasa from Kumanovo was the only organisation that had conducted a survey with parents to determine the most appropriate term. The parents preferred “persons with disabilities”. Polio Plus indicated that the terminology was a second-degree issue; ensuring full realisation of rights for persons with disabilities was their priority. While the mapping clearly showed that the organisations used a variety of terms, overwhelming majority of organisations were of the opinion that using a terms with adjective (e.g. handicapped, disabled, invalid) were labeling and degrading for persons with disabilities. The only exception in this regard is the National Association of Persons with Physical Disability – Mobility Macedonia, which thought that the term “invalid persons” is “the most realistic” and considered it to be “agreed upon term by most organisations in the country”. However, the organisation did not provide any details concerning the process of intra-organisational consultations. The Union of the Blind Persons of Macedonia, on the other hand, used the term “persons with invalidity”. These were the only two organisations that used terms such as “invalid” and “with invalidity” and both are members of the National Council of Disability Organisations of Macedonia. It has to be stressed that in Macedonian language, the National Council uses the term “invalid” in its official name – Национален совет на инвалидските организации на Македонија (and uses the term “disability” in the name’s English translation). It is interesting to note that the Special Olympics Macedonia used the term “athletes” in the communication with their beneficiaries and for public relations purposes, opting to highlight that their beneficiaries were engaged in sports. The table below presents the terminology preferred by the interviewed organisations: Table 12: Organisations and terminology Term Organisations Persons with 13 special needs Shpresa; Lastovica; Apollonia Foundation; Realnost , ; Marko Polo Explorer; Solem; Einstein; Day-care Center-Vinica, In My World, Bravura Kooperativa, Svetlina-, Association of Parents of Children with Cerebral Palsy – Prilep, Association of Parents of Children with Cerebral Palsy – Kratovo Persons with 12 disabilities Mobility Challenge; Hendimak; Vera; Association of Persons with Cerebral Palsy – Veles; Poraka nova, ; Poraka nasa, Kumanovo; MSSA, PORAKA; Handicap Plus – Kriva Palanka; Trisomija 2; Poraka Negotino; Special Olympics Macedonia Persons with 3 handicap Polio Plus; Association of Students and Youths with Disabilities; Humanitarian Association of Citizens and Persons with Disabilities Ilinden Persons with 1 invalidity Union of the Blind Persons of Macedonia Invalid persons 1 National Association of Persons with Physical Disability – Mobility Macedonia Other 3 Give Us Wings; Resource Centre for Parents and Children with Disabilities: “children with atypical development” Down Syndrome Centre: “children with developmental difficulties” Total 33

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3.3. Extent to which organisations are linked or connected to other organisations On national level, 17 organizations (11 of them are from the Skopje region) cooperate and are engaged in different joint initiatives, including networking. Their participation in initiatives or membership in networks can be grouped in three clusters: membership in regional networks, partnership and cooperation with other organisations on national level, and informal partnership and participation in different initiatives in the field of disability. Ten organisations are part of formal national or regional networks: Table 13: Organisations and national and regional networks Organisation Region Network Association of Persons with Vardar Network of organizations for persons with disability Cerebral Palsy – Veles in the Vardar region Solem Skopje Platform for implementation of a strategy for reproductive sexual education in schools Polio Plus – Movement Against Skopje Macedonia without Discrimination Disability Kooperativa Bravura East ROMB-Network of organizations for persons with special needs (Bregalnica, Vinica, , Delcevo, ) Association of Students and Skopje Students Union, Association of Special Educators Youths with Disabilities in Macedonia PORAKA Skopje National Council of Disability Organisations of Macedonia, Macedonian Platform against Poverty, Platform for implementation of a strategy for reproductive sexual education in schools, Macedonia without Discrimination Trisomija 21 Skopje Alliance for Rare Diseases Association of Parents of Pelagonija Youth Council Children with Cerebral Palsy Give Us Wings Skopje Alliance for Rare Diseases, Macedonian Platform against Poverty Poraka Negotino Vardar Network of organizations for persons with disability in the Vardar region On international level, 16 organisations are members of relevant networks or take part in cross-border initiatives, mainly of regional and European character. Most of these organisations (12) come from Skopje. Of these 16 organisations, 12 are member of formal international networks; the remaining four collaborate with similar organisations in relevant ad-hoc (shorter-term) international initiatives. It has to be noted that Bravura Kooperativa from Delchevo is the only organisation outside of the Skopje region that reported being an active member of a formal international network.

Page 14 of 30 Table 14: Organisations and international networks Organisation Region Network Mobility – Challenge Skopje GPDD - Global Partnership on Disability and Development, The international Network of Women with Disabilities (NWWD) Union of the Blind Persons Skopje European Union of the Blind, Balkan Advisory of Macedonia Committee, World Council of the Blind, IPSTA National Union of Persons Skopje European Disability Forum, European Organisation with Physical Invalidity – of Persons with Physical Disability, various regional Mobility Macedonia network of organizations for physically impaired persons Polio Plus – Movement Skopje Disability People Against Disability MSSA Skopje European Association of Service Providers for Persons with Disabilities, Autism , Global Autism Collaboration Bravura Kooperativa East ISF Association of Students and Skopje Various students’ networks in South-East Europe Youths with Disabilities PORAKA Skopje Forum for monitoring UNCRPD implementation at European level, European Association of Service Providers for Persons with Disabilities, Inclusion Europe, Inclusion International Resource Centre for Skopje PACER Centre – Parent Advocacy Coalition for Parents and Children with Educational Rights Disabilities Give Us Wings Skopje Alliance for Tuberous Sclerosis Down Syndrome Centre Skopje International Down Syndrome Special Olympics Skopje Special Olympics International Macedonia It is interesting to note that a total of 12 organisations reported taking part in regional, national and international initiatives and ad-hoc actions. This illustrates their efforts to promote their work and the willingness to engage in information and experience sharing with others. On the negative end, 12 organisations did not have any formal or informal cooperation with other regional, national or international actors. The most valuable benefits of networking and cooperation on regional, national and international level were: - possibilities to exchange knowledge, information and experience; - development of new joint initiatives and projects; - easier implementation of joint projects between “familiar” persons and organisations; - obtaining new contacts and meeting new persons and organisations, etc. Several organisations specifically mentioned the common challenges and difficulties that burdened the efforts for cooperation with other organisations including: the impression that organisations were “afraid to communicate and share their experiences”;that it was not easy to establish and maintain direct, open and active communication, especially with organisations from abroad; that the National Council of Disability Organisations is a “closed circle” of the old national unions (organised per disability type and listed in section 3.1 of this report), which did not actively cooperate with other organisations on issues of common interest, such as general disability advocacy issues; perceptions that the National Council was seeking to present itself as the sole national coordination mechanism for monitoring of the implementation of the UN Convention on the Rights of Persons with Disabilities, including the preparation of the country’s shadow report. It was recommended that that

Page 15 of 30 efforts should be made to improve the participatory character of the shadow reporting on the Convention implementation. In terms of intra-organisational initiatives for funding (i.e. organisations cooperating together to fund raise, including applications to donors’ call for proposals), 15 of 33 organisations reported having being part of such partnerships. The remaining 18 organisations were not involved in joint fundraising initiatives or applications. The organisations’ cooperation with the public sector was assessed at two levels: local (local self-government, i.e. , including local branch offices of national educational, social, health, and other relevant institutions) and national. Generally, the organisations positively assessed their cooperation with the institutions; not a single organisation reported having a conflict with the local institutions. Table 15: Cooperation with local institutions Cooperation with local institutions Skopje Other Total region regions We have regular communication and cooperation based on mutual 9 9 18 respect and trust with the local institutions We have ad-hoc communication and cooperation on issues of 8 5 13 common interest with the local institutions We have no communication with the local institutions 0 1 1 Other 1 0 1 Total 18 15 33 Majority organisations (18 of 33) felt that their relations with the local institutions is based on mutual respect and trust; additional 13 organisations communicated on ad-hoc basis on issues of common interest. This indicates that the organisations are a respected and valuable partner of the local institutions. Marko Polo Explorer from was the only organisation that did not have any communication with the local institutions. The Union of the Blind of Macedonia responded that the cooperation with local institutions was the responsibility of their local branches, thus their answer was classified as “other” in the table presented above. Regarding the cooperation with the national institutions, slightly less than one-third of all organisations (10 of 33) assessed that their relations are based on mutual respect and trust; slightly more than one-third of the organisations (12 of 33) establish cooperation on ad-hoc basis; and one-third of the interviewed organisations reported having no communication with the national institutions at all. Table 16: Cooperation with national institutions

Cooperation with national institutions Skopje Other Total region regions We have regular communication and cooperation based on 9 1 10 mutual respect and trust with the local institutions We have ad-hoc communication and cooperation on issues of 4 8 12 common interest with the local institutions We have no communication with the national institutions 5 6 11 Total 18 15 33 Not a single organisation reported being in conflictual relations with any national institution. However, it is noticeable that the organisations in Skopje generally have reported having better relations with the national institutions compared to organisations from other regions. The research was not designed to investigate the reasons for this; however, the fact that all national institutions are based in Skopje probably eases the establishment of “regular communication and cooperation” between national institutions and Skopje-based organisations. Also, it has to be noted that this result is impacted by the fact that all head-

Page 16 of 30 offices of the national unions of persons with different types with disabilities are located in Skopje, as well. It is exactly the head-offices that are largely tasked to conduct the advocacy work with national institutions on behalf of all branch offices throughout the country. In the opinion of the organisations, the key factors for successful cooperation with the institutions were: mutual respect, regular meetings (i.e. direct communication), and information sharing. Several organisations particularly stressed that institutions needed to be regularly informed about the organisations’ activities and work, which improves their visibility and credibility. Majority of the interviewed organisations (20 of 33) were registered with the Ministry of Labour and Social Policy as “civic associations active in social protection”. 11 of the 20 registered organisations were from the Skopje region. The key benefits for the registered organisations included: information about and invitation to various events and happenings related to disability, participation in public debates on public policies and strategies, and eligibility to apply for grants with the Ministry or to join its relevant projects. The following factors were assessed to foster the cooperation between the Ministry of Labour and Social Policy and the organisations: ministry’s dedicated staff and their regular exchange of information with organisations’ representatives, “personal connections with key persons at the Ministry”, and persistence of the organisation in promoting its views on the needs of the persons with disabilities. On the negative side, the organisations were under the impression that insufficient or lack of communication between the Ministry and the organisations was the key negative factor impeding cooperation. Also, lack of willingness on representatives of both sides to maintain and improve communication was identified as a barrier for good relations.

3.4. Organisations’ capacity for raising awareness, advocacy and social mobilisation The oganisations’ capacity for raising awareness, advocacy and social mobilisation was mainly assessed through their past experiences in and portfolio of similar initiatives, the technical and office resources at their disposal, as well as the staff capacity to work towards their future vision. Approximately two thirds of the organizations (23) reported that they participated in initiatives for promoting the inclusion of children with disabilities. Most of them pointed out initiatives like public awareness raising, capacity building and promotional materials. Table 17: Organisations and initiatives promoting inclusion

Initiatives Organisations Public initiatives (debates, 19 public awareness raising Shpresa, Skopje; Hendimak, ; Realnost, Gostivar; Vera, activities, etc.) ; Mobility Macedonia, Skopje; Poraka Nova, Struga; Solem, Skopje; Poraka Nasa, Kumanovo; Polio Plus, Skopje; MSSA, Skopje; In My World, Skopje; Handicap Plus, Kriva Palanka; Give Us Wings, Skopje; Down Syndrome Centre, Skopje; Trisomija 21, Skopje; Poraka Negotino, Negotino; Special Olympics Macedonia, Skopje; Associations of Persons with Cerebral Palsy, Veles; Association of Parents of Children with Cerebral Palsy, Kratovo Capacity building initiatives 5 (trainings, workshops, etc.) Mobility-Challenge, Skopje; Reality, Gostivar; Marko Polo Explorer, Bitola; PORAKA, Skopje; Association of Students and Youths with Disability, Skopje Written info materials (leaflets, 4 booklets, etc.) Reality, Gostivar; Poraka Nova, Struga; Polio Plus, Skopje; PORAKA, Skopje

Page 17 of 30 In addition, 23 organizations had implemented informing and advocacy initiatives specifically focusing on the rights of children with disabilities. Most of these activities were closely connected with the initiatives for awareness rising for inclusion listed above. However, there are some specific examples which can be pointed like: Mobility Challenge organised an international conference focusing on the gender aspects of disability, which included education of girls and women with disabilities. Similarly, the Down Syndrome Centre – Skopje organised an international event that focused on the inclusion of children and youths with Down syndrome. Several organisations: Vera from Strumica, Give Us Wings from Skopje, Association of Persons with Cerebral Palsy from Veles, and the Associations of Parents of Children with Cerebral Palsy from Kratovo used their regular cooperation with media to inform the public and advocate for the rights and inclusion of children with disabilities. Kooperativa Bravura from Delchevo prepared and promoted an animated book presenting the rights of children with disabilities in an understandable manner. Handicap Plus from Kriva Palanka reported organising a series of local debates that promoted the need to ensure inclusion of children with disabilities at local level. Ten organisations undertook or participated in public awareness campaigns specifically promoting the UN Convention on the Rights of Persons with Disabilities: Shpresa from Skopje, the Union of Persons with Physical Disability – Mobility Macedonia from Skopje, Association of Persons with Cerebral Palsy from Veles, Poraka Nova from Struga, Polio Plus from Skopje, PORAKA from Skopje, Association of Parents of Children with Cerebral Palsy from Prilep, Handicap Plus from Kriva Palanka, Trisomija 21 from Skopje, and Poraka Negotino from Negotino. In a unique example, Poraka Nova from Struga published and distributed a brochure on the UN Convention on the Rights of Persons with Disabilities4. The most concrete accomplishments of the organisations in terms of encouraging the inclusion of children with disabilities include: - preparation and implementation of nine local action plans for improvement of rights of persons with disabilities. Education of children and youths with disabilities was one of the priorities in all action plans. Persons with disabilities were actively involved in the preparations (Shpresa, Skopje); - a child with disability enrolled in a mainstream school (thus avoided attending special school) following the preparatory work by special educators of the Educational Centre Svetlina (Light) from Prilep. A total of 19 organisations reported having undertaken capacity building activities and initiatives with regards to the inclusion of children (and youths) with disabilities in the past three years.

4 Open the Windows, the conductor of this research published and distributed an easy-to-read version of the UN Convention on the Rights of Persons with Disabilities in 2012. This example is not presented in the main report, as the organisation was not included among the interviewed organisations.

Page 18 of 30 Table 18: Organisations and capacity building activities with regards to inclusion

Initiatives Organisations Organization of For educational representatives, including parents of children with trainings and disabilities (kindergardens, primary, secondary schools, higher awareness education): 8 workshops Shpresa, Skopje; Mobility-Challenge, Skopje; Lastovica, Skopje; Apollonia Foundation, Gevgelija; Union of the Blind Persons of Macedonia, Skopje; Poraka Nova, Struga; Macedonian Scientific Society on Autism (MSSA), Skopje; In My World, Skopje; Association of Students and Youths with Disabilities, Skopje; Trisomija 21, Skopje For other professionals, organizations: 5 Union of Blind Persons of Macedonia, Skopje; Poraka Nova, Struga; Polio plus, Skopje; PORAKA, Skopje; Give Us Wings, Skopje Strengthening the 5 administration’s Shpresa, Skopje; Union of the Blind Persons of Macedonia, Skopje; Poraka capacities of Nasa, Kumanovo; Association of Students and Youths with Disabilities, Skopje; PORAKA, Skopje Trainings for 3 potential Hendimak, Tetovo; Poraka Nasa, Kumanovo; Polio Plus, Skopje employers on inclusion of persons with disabilities Raising public 3 awareness Union of Persons with Physical Disability - Mobility Macedonia, Skopje; debates for Poraka Negotino, Negotino; Special Olympics Macedonia, Skopje inclusion of children with disabilities Concrete examples include: Polio Plus worked with other organisations, companies (employers), chambers of commerce, construction companies, judges, and members of Parliament (members of the Inter-party Parliamentary Lobby Group, which exists since 2004) to improve their understanding on disability and their capacity to ensure inclusion. Give Us Wings is the only organization that provided trainings to other organisations’ representatives for therapeutic riding and swimming. Special Olympics Macedonia said that they had created teams of athletes with and without disabilities to help improve sport performance of their beneficiaries; athletes without disabilities were trained to help their colleagues with disability. Thirty-one of the 33 organisations provided their opinion on the priority issues that needed to be the subject of joint advocacy activities of civic actors. The implementation of the UN Convention on the Rights of Persons with Disabilities was the top priority, followed by: inclusive educational system, employment opportunities for persons with disabilities, and awareness raising of the general public. All organisations expressed interest to take part in and support joint advocacy initiatives of the civic sector that would be implemented in partnerships and through networking.

Page 19 of 30 Table 19: Organisations and joint advocacy issues

Initiatives Organisations Implementation 12 of CRPD Shpresa, Skopje; Union of Persons with Physical Disability - Mobility Macedonia, Skopje; Solem, Skopje; Poraka nasa, Kumanovo; Hendimak, Tetovo; Realnost, Gostivar; Polio Plus, Skopje; MSSA, Skopje; In my world, Skopje; Association of Students and Youths with Disabilities, Skopje; Apollonia Foundation, Gevgelija; Down Syndrome Centre, Skopje Inclusive 9 educational Lastovica, Skopje; Vera, Strumica; Marko Polo Explorer, Bitola; Einstein, system Skopje; MSSA, Skopje; Educational Centre Svetlina, Prilep; Association of Parents of Children with Cerebral Palsy, Kratovo; Give Us Wings, Skopje; Trisomija 21, Skopje Employment of 5 persons with Vera, Strumica; Handicap Plus, Kriva Palanka; Association of Parents of disability Children with Cerebral Palsy, Prilep; Association of Parents of Children with Cerebral Palsy, Kratovo; Poraka Negotino, Negotino Awareness 5 raising Mobility-Challenge, Skopje; Association of Persons with Cerebral Palsy, Veles; PORAKA, Skopje; Give Us Wings, Skopje; Special Olympics Macedonia, Skopje Inclusion of 3 persons with Day-care Centre, Vinica; Down Syndrome Centre, Skopje; Poraka Nova, disability in the Struga society Networking with 3 other Bravura Kooperativa, Delchevo; Down Syndrome Centre, Skopje; Trisomija organisations 21, Skopje Changes in the 1 legislative Mobility Challenge, Skopje Physical 1 accessibility Ilinden, Skopje Independent 1 living Vera, Strumica Concerning their vision for the future with regards to the inclusion of children with disabilities, the organisations stated: overall social inclusion, inclusive educational system, and respect (exercise) of the rights of persons with disabilities. These answers once again implicate the importance of inclusive education, as the basis for long-term inclusion of the persons with disabilities as active, contributing, and independent citizens of the Macedonian society. However, the organisations focusing on persons with physical disabilities highlighted the importance of ensuring accessibility. All organizations, except Trisomija 21, shared their future vision during the interviews (total of 32).

Page 20 of 30 Table 19: Organisations and future vision

Vision for the Organizations future Social inclusion 18 (active persons Hendimak, Tetovo; Mobility-Challenge, Skopje; Lastovica, Skopje; Vera, with disabilities, Strumica; MarkoPolo Explorer, Bitola; Union of Persons with Physical raised Disability - Mobility Macedonia, Skopje; Union of the Blind Persons of awareness) Macedonia, Skopje; Poraka Nasa, Kumanovo; Polio Plus, Skopje; Day-care Centre, Vinica; Bravura Kooperativa, Delchevo; Association of Students and Youths with Disabilities, Skopje; Association of Parents of Children with Cerebral Palsy, Kratovo; Association of Parents of Children with Cerebral Palsy, Prilep; PORAKA, Skopje; Poraka Negotino, Negotino; Give Us Wings, Skopje; Special Olympics Macedonia, Skopje Inclusive 14 educational Apollonia Foundation, Gevgelija; Realnost, Gostivar; Marko Polo Explorer, system Bitola; Poraka Nova, Struga; Union of the Blind Persons of Macedonia; Association of Persons with Cerebral Palsy, Veles; Einstein, Skopje; MSSA, Skopje; Day-care Centre, Vinica; In My World, Skopje; Association of Students and Youths with Disabilities, Skopje; Educational Centre Svetlina, Prilep; Resource Centre for Parents and Children with Disabilities, Skopje; Give Us Wings, Skopje Respected rights 12 for persons with Shpresa, Skopje; Ilinden, Skopje; Vera, Strumica; Marko Polo Explorer, Bitola; disabilities (equal Union of the Blind Persons of Macedonia, Skopje; Union of Persons with rights, equality) Physical Disability-Mobility Macedonia, Skopje; Polio Plus, Skopje; PORAKA, Skopje; Handicap Plus, Kriva Palanka; Give Us Wings, Skopje; Down Syndrome Centre, Skopje Improved 3 physical Mobility-Challenge, Skopje; Union of Persons with Physical Disability-Mobility accessibility Macedonia, Skopje; Polio Plus, Skopje In terms of the capacities that the organisations had at their disposal to work towards their visions for the future, the situation is as follows: Concerning the office space, only ten organisations had the office space in their possession; the other 23 organisations mainly rented or shared the office space with other organisations. Table 20: Organisations and office space

Office space Number of organisations Yes, it has its own office 10 Yes, the organisation uses rented office space 7 Yes, the organisation uses offices with other organisations 7 No, organisation does not have office 5 The organisation does not need office 1 Other (specify) 3 Total: 33 The three organisations that answered “other” were: Poraka Nova from Struga, which used free office space from the municipality; the Day-care Centre in Vinica, which was located within the local kindergarten5; and the Macedonian Scientific Society for Autism, which worked for free in the premises of the Institute for Special Education and Rehabilitation. Interestingly, the number of organisations in possession of their office space is larger in the seven non-Skopje regions compared to the capital (the research did not address the reasons).

5 The kindergarten works under the auspices of the Ministry of Labour and Social Policy, as does the Day-care Centre.

Page 21 of 30 Regarding the office and technical equipment, more than two-thirds of all 33 interviewed organisations could easily carry out their activities with the equipment they had. However, four organisations: Special Olympics Macedonia, Association of Parents of Children with Cerebral Palsy from Kratovo, Marko Polo Explorer from Bitola, and Vera from Strumica, said that they lacked “the necessary technical, office and other equipment” and found it “difficult to carry out activities”. In fact, Marko Polo Explorer from Bitola said that the organisation had “received a donation in office equipment from UNICEF, which could not be used due to lack of office space (the equipment is stored in a warehouse)”. Table 21: Organisations and technical and office equipment

Technical and office equipment No. of organisations Yes, the organization has the necessary technical, office and other 16 equipment in order to carry out the activities The organization has most of the necessary technical, office and other 7 equipment to carry out activities without major difficulties The organization has small part of the necessary technical, office and 3 other equipment due to which often faces difficulties in carrying out the activities No, organization does not have the necessary technical, office and other 4 equipment and it is difficult to carry out activities Other (specify) 3 Total: 33 The three organisations that answered with “other” includes: the Down Syndrome Centre, where the members used their own personal equipment; the Macedonian Scientific Society for Autism, which used the equipment of the Institute for Special Education and Rehabilitation; and the Day-care Centre from Vinica, which stressed the need for equipment that would enable work rehabilitation of adults as it also “provided services to adult persons with disabilities, and not only children” (the Centre considered it was well equipped for working with children). Concerning their capacity to monitor the rights of children with disabilities, only nine organisations (27.3% of all interviewed) self-assessed their capacity as “adequate”; 13 thought that their capacity was “insufficient” (39.4%); and 11 answered that they did “not have the capacity”. It is noticeable that organisations coming from other than the Skopje region provided lower assessment of their own monitoring capacity.

Page 22 of 30 Table 22: Organisations and capacity to monitor the rights of children with disabilities

Self- Skopje region Other regions Total assessment number of the organisation’s capacity The 5 4 9 organisation Mobility-Macedonia, Polio Plus, Realnost, Gostivar; Association of has adequate MSSA, Association of Students Persons with Cerebral Palsy, capacity and Youths with Disabilities, Veles; Handicap Plus, Kriva PORAKA Palanka; Poraka Negotino, Negotno The 9 4 13 organisation Mobility-Challenge, Lastovica, Hendimak, Tetovo; Marko Polo has insufficient Union of the Blind Persons of Explorer, Bitola; Poraka nasa, capacity and Macedonia, Solem, In My World, Kumanovo; Bravura Kooperativa, further Parents Disabiltiy Resource Delchevo strengthening Centre, Give Us Wings, Trisomija is needed 21, Special Olympics Macedonia The 4 7 11 organisation Shpresa, Ilinden, Einstein, Down Apollonia Foundation, Gevgelija; does not have Syndrome Centre Vera, Strumica; Poraka Nova, capacity Struga; Day-care center, Vinica; Svetlina, Prilep; Ass. of Parents of Children with Cereb. Palsy, Prilep; Ass. of Parents of Children with Cereb. Palsy, Kratovo Total: 18 15 33

The National Union of Persons with Physical Disability – Mobility Macedonia had permanent organizational bodies tasked to monitor the rights of person with disabilities. Most organisations obtained their capacity through relevant trainings. Several mentioned the importance of ‘learning by doing’. Less than one-third of all interviewed organisations reported that their staff had received specific trainings in human rights monitoring in general and monitoring of implementation of the Convention on the Rights of the Child or the Convention on the Rights of Persons with Disabilities. Table 23: Organisations and staff training on monitoring the rights of children with disabilities

Received training Region Yes No Skopje 6 12 Other regions 4 11 10 23 Total: 33 No organisation reported specific activities for monitoring that were based on using the knowledge and skills obtained through the trainings, which were rather used in their “daily” work. Finally, international donor organisations and agencies and the business sector are the major sources of funding of the interviewed organisations. EU and USAID were most commonly mentioned as the major donors.

Page 23 of 30 One-third of the organisations received public funding, with most of them pointing out to the local municipality as the key donor.. Furthermore, four organisation received public funding through the Ministry of Labour and Social Policy.. Three organisationsreported having no sources of funding. Seven organisations mentioned that they raise funds through charitable (humanitarian) events and individual donations. Table 24: Organisations and sources of funding

Funding sources for organisations Number International donor organisations and agencies 17 Business sector 17 Public funding (i.e. national or local institutions) 11 Membership fees 7 Other (humanitarian activities, donation) 7 Domestic civic organisations and foundations 4 Other own income (commercial activity, social entrepreneurship, etc.) 3 Fifteen organisations had partnerships or joint initiatives with other organisations with regards to fundraising, of which: - Six organisations cooperated with both domestic and foreign organisations: Mobiltiy Challenge, Skopje; Hendimak, Tetovo; Poraka Nova, Struga; Solem, Skopje; Poraka Nasa, Kumanovo; and Polio Plus, Skopje. - Six organizations cooperated with domestic organisations only: Marko Polo Explorer, Bitola; Einstain, Skopje; MSSA, Skopje; Association of Students and Youths with Disabilities, Skopje; Svetlina, Prilep; and Association of Parents of Children with Cerebral Palsy, Prilep. - Three organisations cooperated only with foreign organisations: Bravura Kooperativa, Delchevo; PORAKA, Skopje; and Poraka Negotino, Negotino. In this regards, Hendimak from Tetovo stressed that they lacked the capacity to independently apply to call for projects and seek to apply in partnerships with other organisations, which provided them with better chances to succeed. On the other hand, Polio Plus from Skopje sought to establish partnerships with smaller organisations with lesser capacity, in order to ensure capacity building and learning by doing. Regarding public funding, 15 organisations reported having applied to calls for proposals by the Government and other national institutions (six organisations were from the Skopje region). Only two were successful and obtained funds. Two organisations responded that they would not apply to governmental calls for proposals in the future, in order to avoid “wasting resources and time for preparing applications in vain”. The Association of Students and Youths with Disabilities from Skopje said that they had never before used public (governmental) funds, unlike the organisations – members of the National Council of Disability Organisations of Macedonia which are permanently funded.

3.5. Availability and type of services to children with disabilities and profile of users Two thirds of the interviewed organisations (22) said that they had experience in providing humanitarian aid to persons with disabilities and their families. Most of them donated food, clothes, hygiene means, school materials, etc., with only a few examples mentioned of donations in orthopaedic aids, wheelchairs, etc. Organisations organised humanitarian events for raising funds together with other organisations, local institutions, and the business sector. Humanitarian aid was provided to

Page 24 of 30 persons with disabilities and families who are in direct communication with the organisations. Only the Apollonia Foundation from Gevgelija coordinated its humanitarian (charitable) activities with the local Centre for Social Work. Polio Plus from Skopje stressed that the organisation was getting involved in charitable activities only at specific donors’ requests, but as an organisation they sought to avoid “promotion of charity”. Two-thirds of the organisations (22) provide various services for persons with disabilities and their families, as follows: Table 25: Organisations and types of services

Type of services Organization Consultancy support to parents Shpresa, Skopje; Lastovica, Skopje; Hendimak, Tetovo; and other professionals working Association of Persons with Cerebral Palsy, Veles; Polio Plus, with children with disabilities Skopje; PORAKA, Skopje; Give Us Wings, Skopje; Down Syndrome Centre, Skopje Direct support to beneficiaries Shpresa, Skopje (psychologist); Lastovica, Skopje; Hendimak, (by special educators, Tetovo (special educator); Association of Persons with psychologist, physiotherapist Cerebral Palsy, Veles (psychologist, physiotherapist, special etc.) educator); Poraka Nasa, Kumanovo (supports beneficiaries in filling-out and submitting documents to relevant authorities, job searching, CV writing, job application and support during interviews, trains mentors in companies to guide emploiyees with disabilities, direct employment mediation), PORAKA, Skopje; Svetlina, Prilep (special educator); Association of Parents of Children with Cerebral Palsy, Prilep (physiotherapist for 6 months only); Poraka Negotino (community-based housing services for persons with intellectual disabilities) Day-care Association of Persons with Cerebral Palsy, Veles; Poraka Nova, Struga; Poraka Nasa, Kumanovo; Day-care Centre Vinica; PORAKA, Skopje; Poraka Negotino, Negotino Social inclusion activities Apollonia Foundation, Gevgelija; Association of Persons with (activities for children with and Cerebral Palsy, Veles; Poraka Nova, Struga; Solem, Skopje without disabilities, such as (financing fitness club visit); Bravura Kooperativa, Delchevo excursions, public activities, visit to institutions etc.) Support for realization of their Mobility-Macedonia, Skopje; Poraka Nasa, Kumanovo; Polio rights (sharing information, Plus, Skopje; Association of Students and Youths with preparing documents, etc.) Disabilities, Skopje Home visits of families with Association of Persons with Cerebral Palsy, Veles; PORAKA, children with disabilities for Skopje; Association of Parents of Children with Cerebral Palsy, consultancsy support Prilep Computer training Shpresa, Skopje; Union of the blind persons of Macedonia, Skopje; Solem, Skopje Organizing sport activities Hendimak,Tetovo; Special Olympics Macedonia, Skopje Other Shpresa, Skopje (classes for foreign languages); Solem, Skopje (vocational training); Association of Students and Youths with Disability, Skopje (personal assistance); Give Us Wings, Skopje (therapeutic riding and swimming) As can be seen, Mobility-Macedonia and PORAKA, two of the national unions, mentioned assisting persons with disabilities in applying with various institutions to exercise their rights. It has to be mentioned that in some cases, the rights can be exercised only if the person with disability is a member of the relevant “union” (regardless of their membership in other organisations). Illustrative examples include: free public transport in the City of Skopje, exemption from pay-tolls, access to disability-reserved parking lots, etc.

Page 25 of 30 Only three organizations reported charging for their services: Lastovica, Skopje; Svetlina, Prilep; and Poraka Nova, Struga. In Prilep, beneficiaries paid 150 MKD per hour of work with special educator, in Struga, the same service was charged 300 MKD. Lastovica did not state their fees, but explained that it was collected as “membership fee”. The frequency of beneficiaries’ usage of the services varies greatly and depends on the type of services that the organisation offers: from daily support to services usage once in the month. Several organisations gave precise information: Shpresa, Skopje offered computer and language classes twice a week. In Lastovica, Skopje, beneficiaries could attend several times a week, weekly, biweekly or monthly to work with special educator. Hendimak, Tetovo, organised sports activities for their beneficiaries twice or three times a week. Association of Persons with Cerebral Palsy from Veles paid home visits once a week. The beneficiaries of Poraka Nova from Struga used the day-care services of the organisation once or twice a week. In Svetlina-Prilep, beneficiaries could work with a special educator three times in a week. Poraka Nasa from Kumanovo, the Day-care Centre-Vinica and Poraka Negotino provide day-care services for persons with intellectual disabilities on daily basis. The Special Olympics Macedonia organised regular weekly trainings for its athletes, but significantly increased intensity of trainings before scheduled competitions (up to four times a week). Most organisations directly involved beneficiaries in the evaluation of their work, mainly through individual meetings with parents and beneficiaries. Six organisations had internal procedures and documents for evaluating their services: Shpresa, Skopje regularly tested its users for their achievements in the courses they had taken. Solem, Skopje prepared individual report for every beneficiary. Poraka Nova from Struga used its own internal documents for assessment, evaluation and reporting. PORAKA, Skopje maintained individual files for all its beneficiaries, which included standardised sections for needs assessment, programme for work and evaluation. Svetlina from Prilep applied very similar procedure and documents in its work. Poraka Negotino used an internal format, i.e. a document called “My life” for the evaluation of the progress of the beneficiaries. Fourteen organisations gave information of the number of beneficiaries that they provide services to: Shpresa, Skopje provides computer and language classes for 30 children with disabilities each. Lastovica, Skopje worked with a total of app. 50 children with disabilities since their establishment. Hendimak, Tetovo organized sport activities for 10-13 children with disabilities and educative activities for 10-15 children with disabilities. Association of Persons with Cerebral Palsy from Veles served four persons in the rural centre and 30 persons in their home visit support programme. Poraka Nova, Struga organised individual classes for 5 children and had 15 persons with disability in their day-care centre. Solem from Skopje worked with 13 persons with intellectual disabilities. Poraka Nasa, Kumanovo served 21 beneficiaries in their day-care centre on daily basis, and additionally covered 280 beneficiaries in three planning regions (Polog, Skopje and Nort-East) through a vocational training project. The Day-care Centre-Vinica had 15 beneficiaries. Assocation of Students and Youths with Disabilities from Skopje provided services to 30 beneficiaries. PORAKA, Skopje had 50 beneficiaries, as well as over 200 beneficiaries in their day-care centres throughout the country (within their branch offices). Svetlina, Prilep worked with 14 children with disabilities. The Association of Parents of Children with Cerebral Palsy from Prilep provided physical therapy for 15 children, but for a limited period of six months. Poraka Negotino said that 55 beneficiaries were part of their day-care centres (in Negotino and Skopje), and 76 persons (adults) were covered through community-based supported housing service (in the same two towns). The Special Olympics Macedonia said that 100- 120 athletes, i.e. beneficiaries were part of their sports activities. Only four organisations mentioned problems and challenges they faced in service provision: sustainability was “the biggest problem with service provision” (i.e. continuous funding); lack of “permanent qualified staff”;communication with parents of persons with disability proved problematic in several instances due to high expectations; not possess the needed

Page 26 of 30 premises and had “inappropriate programmes for work with the beneficiaries with disabilities”. When the information on service provision were cross-analysed with the sources of funding, it is worth to mention that of the 11 interviewed organisations that reported using public funds (table 24), 10 are service providers. However, the research was neither designed to, nor determined the reasons for this. Concerning the key future needs of the children with disabilities that the organization worked with, the provided answered focussed on four main issues: Table 26: Organisations and future key needs of children with disabilities

Key future needs Organisations Support to persons with Apollonia Foundation, Gevgelija; Hendimak, Tetovo; Marko Polo disabilities and their families Eksplorer, Bitola; Solem, Skopje; Poraka Nasa, Kumanovo; Polio (educational, medical, Plus, Skopje; Day-care Centre-Vinica; Bravura Kooperativa, financial, psychological, Delchevo; Association of Students and Youths with Disabilities, personal assistant, Skopje; PORAKA, Skopje; Association of Parents of Children with employment, etc.) Cerebral Palsy, Prilep; Parents Disability Resource Resource Centre, Skopje; Poraka Negotino, Negotino; Special Olympics Macedonia, Skopje Better treatment (early Mobility-Challenge, Skopje; Lastovica, Skopje; Association of diagnosis, early intervention, Persons with Cerebral Palsy, Veles; Poraka Nasa, Kumanovo; rehabilitation, special MSSA, Skopje; Bravura Kooperativa, Delchevo; Give Us Wings, education, etc.) Skopje; Down Syndrome Centre, Skopje; Trisomija 21, Skopje Inclusion in regular Shpresa, Skopje; Vera, Strumica; Poraka Nasa, Kumanovo; education (trained teachers, Einstain, Skopje; In My World, Skopje; Svetlina, Prilep; Association teaching materials and aids, of Parents of Children with Cerebral Palsy, Kratovo; Give Us Wings, educative programs, etc.) Skopje; Trisomija 21, Skopje Overall accessibility Ilinden, Skopje; Realnost, Gostivar; Union of the Blind Persons of (transport, access to public Macedonia, Skopje; Mobility Macedonia, Skopje; Poraka Nova, buildings, assistive aids, Struga; Bravura Kooperativa, Delchevo; Handicap Plus, Kriva accessible education, etc.) Palanka Eight organisations had formal, written organisational strategies to work towards satisfying the identified needs of their beneficiaries. In addition, one organisation based its work on “annual planning”, and another said it followed the “the local (municipal) action plan on disability”. All organisations responded that their documents were prepared in close communication and cooperation with the beneficiaries and their families. In terms of the key organisational needs with regards to their work towards inclusion, most organisations highlighted the need for sustainable funding, permanent staff and premises. However, four organisations stressed the need for capacity building of staff through trainings and four others sought options to improve networking and possibilities for exchange of information and experiences. The most demanded area of training was formulation of projects and preparation of applications, as well as project administration and management. One organisation called for “partnership with the state institutions”. Concerning the legislation, 26 of the 33 interviewed organisations felt that there were no systematic (legislative) obstacles that impacted their work; seven organisations mentioned the following barriers: problems in regulating employment of persons with intellectual disabilities who were at the same time beneficiaries of the community-bases supported housing services (i.e. their beneficiaries were not entitled to employment); civic (non-profit) organisations generally had equal tax status as profit-making companies; parents of persons with intellectual disabilities over the age of 26 “should also be entitled to part-time jobs” and that “the rights of biological and foster families need to be equal”; . “enabling persons with intellectual disabilities to enter into marriage on equal footing as other citizens”;law regulating legal capability was outdated and needed to be improved; need for improved legislation regulating the right to orthopaedic aids. The remaining two complaints referred to

Page 27 of 30 the actual implementation of existing laws in the field of apprenticeship and the amount paid as social benefit for blind persons (the National Union of the Blind called for this amount to equal the average salary in the country).

3.6. Availability of data and systems used to collect data on children with disabilities More than half of the organisations (19) collected data and conducted research activities concerning persons with disabilities. Table 27: List of organisations that conduct research work on children with disabilities

Skopje region Other regions Total 12 7 19 Mobility-Challenge, Ilinden, Union of the Blind Association of Persons with Cerebral Persons of Macedonia, Mobility-Macedonia, Palsy, Veles; Poraka Nova, Struga; Poraka Einstein, Polio Plus, MSSA, In My World, Nasa, Kumanovo; Bravura Kooperativa, Association of Students and Youths with Delchevo; Association of Parents of Disabilities, PORAKA, Resource Centre for Children with Cerebral Palsy, Kratovo; Parents and Children with Disabilities, Down Association of Parents of Children with Syndrome Centre Cerebral Palsy, Prilep; Poraka Negotino, Negotino In correlation with the eight planning regions, it is noticeable that organisations from the Skopje region more often conducted research activities than organisations from other regions. Part of the other organisations that responded that they did not conduct research works or collect data had, in fact, data on their members/beneficiaries in their internal registers and used it only in their daily work with their beneficiaries. Those that systematically collected data, did so on different levels: local, regional, and national, depending on their needs and activities. Some organisations reported cooperating with local and national institutions (in particular the Ministry of Labour and Social Policy) in conducting research works and collecting data. Mainly, the organisations collected statistical data on number of persons with disabilities disaggregated per types of disabilities, gender, age, education, health, social status of families, employment, etc. Collected data is used to: plan activities, support information and advocacy activities, and in the organisations’ regular communication with donors, and local and national institutions, as presented in the table below. Table 28: Organisations and use of collected data

Use of data Organisations Planning activities Ilinden, Skopje; Association of Persons with Cerebral Palsy, Veles; Poraka Nasa, Kumanovo; Polio Plus, Skopje; Resource Centre for Parents and Children with Disabilities, Skopje Advocacy and Union of the Blind Persons of Macedonia, Skopje; Poraka Nova, Struga; media work Poraka Nasa, Kumanovo; Polio Plus, Skopje; Bravura Kooperativa, Delchevo; Association of Students and Youths with Disabilities, Skopje; PORAKA, Skopje; Association of Parents of Children with Cerebral Palsy, Prilep; Association of Parents of Children with Cerebral Palsy, Kratovo Communication Mobility-Macedonia, Skopje; Poraka Nasa, Kumanovo; Einstein, Skopje; with donors and Polio Plus, Skopje; MSSA, Skopje; In My World, Skopje; Association of institutions Students and Youths with Disabilities, Skopje; PORAKA, Skopje; , Association of Parents of Children with Cerebral Palsy, Prilep; Association of Parents of Children with Cerebral Palsy, Kratovo; Resource Centre for Parents and Children with Disabilities, Skopje; Poraka Negotino, Negotino

Page 28 of 30 Bravura Kooperativa pointed out that they used data on persons with disabilities for preparing applications for new projects. Poraka Nova collected data for preparing annual reports. MSSA, as the only scientific organisation, stated that the collected data were used for scientific articles, master thesis, etc. Mobility-Challenge said that they used statistical information from relevant institutions and were also involved in surveys or other researches; however, they raised the issue of finance and experience needed to conduct research works of appropriate quality. Poraka Nova from Struga prepared data base for persons with intellectual disability, in cooperation with the Centre for Social Work in Struga. In a positive example of concrete use of collected data, Ilinden from Skopje conducted a local survey on how many children with disabilities had passports. The results were then presented to the local business sector, which provided funds for all children with passports to spend a free summer holiday abroad.

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4. CONCLUSIONS

Extent to which organisations exist in different areas and for different impairments 1. In all eight planning regions of Macedonia, organisations exist that are active in the field of inclusion of children or persons (including children) with disabilities. 2. There are significant regional differences in terms of the number of organisations active in the field of inclusion of children or persons (including children) with disabilities, with the Polog and the North-Eastern regions in the most unfavourable situation. 3. There are no organisations headquartered in rural areas, indicating lesser level of available support and services for children with disabilities. This is partly compensated as some organisations from towns also work in the surrounding . 4. There are a few organisations that work with autistic spectrum disorders and learning difficulties. There is only one organisation dealing with autism that is not in Skopje.

Organisations’ understanding of disability 5. Most organisations include persons with disabilities of their representatives (parents or guardians) in their governance boards and among their volunteers. 6. Less than half of the organisations with employees employ at least one person with disabilities. 8. Most organisations do not have formal internal procedures that foster the inclusion of persons with disabilities in their governance boards, staff, and volunteers. This limits their ability to act as change agents and role models for other societal actors in terms of inclusion of persons with disabilities. This seems to be overlooked by most organisations. 9. Most organisations apply participatory approach in needs identification and setting up organisational priorities, i.e. persons with disabilities are directly involved or consulted. This indicates that the organisations practically implement the “Nothing about us, without us” motto of the UN Convention on the Rights of Persons with Disabilities. 10. There is no consensus among organisations on the most appropriate term for persons with disabilities. However, overwhelming majority of the organisations considered using a term with an adjective (e.g. disabled, handicapped, invalid) to be labelling and degrading. “Persons with special needs” and “persons with disability” were considered to be most appropriate by slightly over one-third of all organisations, each. Organisations seem to be almost univocal in rejecting the constitutional term “persons with invalidity”, which (or a variation thereof) is preferred only by the national unions of persons with physical disability and of blind persons, respectively.

Extent to which organisations are linked or connected to other organisations 11. Most organisations are aware of the benefits of networking and inter-organisational cooperation, highlighting information, knowledge and experience exchange, and possibilities for development of new initiatives and projects among the key benefits. The participation of Macedonian organisations in international networks is regionally unbalanced: Only one organisation out of the Skopje region is a part of an international network.

Page 30 of 30 12. There is no network or initiative that unites organisations in advocacy or awareness raising efforts on the inclusion of persons with disabilities or other issues of common interest. The National Council of Disability Organisations of Macedonia seeks to undertake the role of national coordination mechanism for monitoring of the implementation of the UN Convention on the Rights of Persons with Disabilities. However, organisations other than the “old” unions of persons with disabilities are not entitled to join the council and question its legitimacy and representation. 13. Less than half of the organisations are part of inter-organisational partnerships for fundraising. This limits the organisations’ chances for securing funding from a variety of donors including the EU, which demand that fund application are submitted by consortia of at least two organisations. 14. Organisations cooperate well with the public institutions, in particular at local level. 15. Direct communication and continuous information sharing were identified as key factors for positive relations between organisations and public institutions.

Organisations’ capacity for raising awareness, advocacy and social mobilisation 16. Organisations have experience in promoting the inclusion of children with disabilities through awareness raising, capacity building, and information sharing. Awareness raising initiatives mainly targeted educational institutions, public administration, and potential employers. Approximately one third of organisations undertook initiatives to specifically promote the UN Convention on the Rights of Persons with Disabilities. 17. The implementation of the UN Convention on the Rights of Persons with Disabilities and improvement of the educational system inclusiveness are prioritised as joint advocacy issues. 18. Over two-thirds of the organisations have the necessary office space and technical equipment, enabling them to carry out activities without major difficulties. 19. In general, organisations have insufficient capacity to monitor the rights of children with disabilities: only app. one-quarter of the organisations felt their capacity was “adequate”. In only one-third of the organisations, staff members had undergone a training specifically focusing on children’s rights monitoring. 20. Organisations’ key sources of funding are: international donors, the business sector, and public funds. Public funding more often comes from local authorities. Institutional funding from national public sources is exclusively and permanently provided to the “old” national unions organised per type of disability. Project funding (grants) were only provided to two organisations in the past three years, of the total of 15 that had applied for the national government’s or other national public institutions’ funds.

Availability and type of services to children with disabilities and profile of users 21. Two-thirds of the organisations provide services for children with disabilities and their families. These services include: direct professional support, consultancy support to families and other professionals working with children with disabilities, day-care activities, home visits, support in realisation of their rights, various recreational and other activities with inclusive character, computer, English language and vocational trainings, sports activities, personal assistance etc.

Page 31 of 30 Organisations work with children with different types of disabilities and provide service with various frequency (on daily basis to bi-weekly and one-off services). 22. Organisations generally provide services for free. Only three organisations charge their services. This further increases the organisations’ burden to ensure sustainability of their services. 23. Organisations prioritise the following future needs of children with disabilities: support from professionals and personal assistance, improved treatment (including early intervention), inclusion in mainstream education, and ensuring physical accessibility. 24. Only one-quarter of the organisations have formal (written) strategic plans to accommodate the identified the needs of their beneficiaries in the future. 25. Key needs of the organisations are: sustainable funding, permanent staff, provision of premises in their own possession, staff training, and additional opportunities for networking. In terms of staff training, organisation stressed the following topics: project formulation and preparation of applications, project administration and management. 26. Organisations identified at least two aspects of the legislation that need to be improved to ensure equal rights for persons with intellectual disabilities: the right to marriage and the issue of legal capacity.

Availability of data and systems used to collect data on children with disabilities 27. Organisations maintain internal registers of the beneficiaries that they work with. 28. More than half of the organisations conduct research works and systematically collect data on persons with disabilities. 28. Organisations use collected data for: planning, advocacy and media work (raising awareness), and communication with donors and institutions. However, data are not used in a manner that would help mend the existing lack of statistical data on children and persons with disabilities in general.

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5. RECOMMENDATIONS

1. Efforts should be made to raise the awareness of the general public, relevant public institutions, professionals and civic organisations concerning the needs of children with disabilities, including learning difficulties. 2. Civic organisations, in particular those focusing on disability, need to be supported to develop and apply affirmative formal internal procedures and policies on representation of persons with disabilities in their governance bodies, staff and volunteers. This will profile them as change agents and role models for other societal actors in mainstreaming the inclusion of persons with disabilities. 3. Wide public discussions need to be initiated to determine the most appropriate term for “disability” and “persons with disability” (and other related terms such as, for example, “defectology – дефектологија”) in Macedonian and the languages of other ethnic groups in the country. These discussions should result in as wide as possible acceptance and use of non-labelling and non-stigmatising terms that reflect the spirit of the Convention and the social paradigm of disability. 4. Cooperation and networking among civic organisations should be supported that aim at joint advocacy or public awareness initiatives fostering the inclusion of children with disabilities. These initiatives should focus upon adequate implementation of the Convention on the Rights of Persons with Disabilities and other international documents (such as the Convention on the Rights of the Child), in particular in the sense of improvement of the educational system inclusiveness. Social media and other internet opportunities need to be explored and used. This would also represent a model for cooperation among disability-related organisations in general. 5. Mechanisms for regular exchange of information, knowledge and experiences need to be developed and supported between the civic organisations and national public institutions. Possible models include: fairs, regular thematic debates, workshops, presentations, etc. These mechanisms need to particularly address the needs and limitations of organisations out of the Skopje region. The involvement of persons with disabilities and their families, experts, professionals, media and the general public needs to be ensured. 6. Public institutions, in particular national, need to increase public funding of services for children with disabilities delivered by civic organisations in an open and transparent manner. 7. Comprehensive and practical trainings should be organised for monitoring of the rights of children for organisations’ staff. 8. Trainings should be organised in project formulation and preparation of applications, and project management for organisations working with children with disabilities. Partnerships between organisations working with children with disabilities could be directly supported in developing and preparing applications for international donors. Possibilities should be examined to provide co-funding when required by the main donor (such as the EU, for example). 9. Organisations should be supported to conduct various research works and systematically collect statistical data on children with disabilities on local, regional, and national level.

Page 33 of 30 Support also needs to be provided for public presentation of the findings. Public internet database could be activated and maintained, to ensure an overview of collected data and thus contribute to mending the existing lack of statistical data on children with disabilities. 10. Technical assistance and support needs to be provided to public institutions to develop mechanisms and procedures to ensure adequate statistical data on children and persons with disabilities in general. This would also help the monitoring of the evaluation of the implementation progress of the Convention on the Rights of Persons with Disabilities and other relevant international documents.

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