30. November 2021

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Für Kinder mit Behinderungen, darunter für Kinder mit Autismus; bestünden in Serbien in folgenden Bereichen Gesetze, Regelungen, Einrichtungen und Organisationen:

·         Inklusive und angemessene Bildung (individueller Bildungspläne, zusätzliche Hilfe bei Bildung, Tutoren innerhalb und außerhalb von Schulen, spezielle Klassenräume)

·         finanzielle Hilfsleistungen für Familien

·         zusätzliche Bildung und Ausbildung von Dienstleister·innen im Gesundheits- und Bildungsbereich

·         Reduktion von Diskriminierung und Missbrauch. (Pejović Milovančeviž et al., 2018, S. 355)

Trotz der Bemühungen in diesen Bereichen seien Kinder mit Behinderungen und deren Familien sehr oft mit finanziellen Problemen und Armut konfrontiert. Sie hätten zudem Schwierigkeiten, angemessene Bildung und Versorgung zu finden und zu erhalten. Sie würden von ihrer Gemeinschaft und Umgebung stigmatisiert und seien von verschiedenen Formen des Missbrauchs und Vernachlässigung betroffen. (Pejović Milovančeviž et al., 2018, S. 355)

Nenad Glumbić von der Universität Belgrad zufolge hätten Buben mit Autismus-Spektrum-Störung (autism spectrum disorder, ASD) offiziell vollen Zugang zu Bildungsunterstützung, sowohl in Sonderschulen als auch in regulären Schulen.

Therapeutische Versorgung werde großteils von Sonderschullehrer·innen bereitgestellt, die ihre Studienabschlüsse an der Fakultät für Sonderpädagogik und Rehabilitation der Universität Belgrad und an der medizinischen Fakultät für Medizin der Universität Novi Sad gemacht hätten. Leider gebe es nicht viele Sonderpädagog·innen in den regulären Schulen. Diese seien für gewöhnlich an speziellen Schulen oder in Privatschulen tätig oder würden in manchen Fällen Unterstützung für allgemeine Lehrer·innen bereitstellen. (Glumbić, 21. Oktober 2021)

EPALE, eine Plattform zur Erwachsenenbildung der Europäischen Kommission, veröffentlichte im Februar 2020 den Blogeintrag von Erika Bartos, der Mutter eines 17-jährigen autistischen Buben, die im Rahmen eines Projektes der serbischen Gesellschaft für Autismus Belgrad besucht habe. Sie habe dort im Oktober 2019 eine Grundschule besucht, die gerade vergrößert werde. Die Schule habe das Ziel, die sozialen und kommunikativen Fähigkeiten der Kinder zu entwickeln und sie für weitere Studien in regulären Bildungseinrichtungen vorzubereiten. (Bartos, 28. Februar 2020)

Fast zwei Drittel der von ASD betroffenen Kinder würden keine allgemeinen Schulklassen besuchen. Am häufigsten würden sie spezielle Klassen für Kinder mit Behinderungen besuchen. Diese Klassen seien die Art der Dienste, die das serbische Bildungssystem weiterhin Kindern mit jeglicher Art von Behinderung anbiete. (Pejović Milovančeviž et al., 2018, S. 360-361)

Im Bereich der angewandten Verhaltensanalyse, der sensorischen Integration und des Trainings der sozialen Kompetenzen gebe es in Serbien nur sehr wenige Expert·innen mit formaler Ausbildung. (Pejović Milovančeviž et al., 2018, S. 360-361)

Milica Pejović Milovančeviž der Vereinigung für Kinder- und Jugendpsychiatrie und für damit verbundene Berufe in Serbien (Association for Child and Adolescent Psychiatry and Allied Professions of Serbia, DEAPS) zufolge hätten Kinder mit ASD in kleineren Gemeinden keinen oder nur sehr eingeschränkten Zugang zu Diensten. In größeren Städten hingegen würden sie mit Diensten überschwemmt. Viele der angebotenen Dienste würden jedoch nicht auf wissenschaftlichen Erkenntnissen beruhen. Pejović Milovančeviž fordere daher Richtlinien für die Diagnose-, Behandlungs- und Bildungsstrategien, die zusätzliche Hilfe und Unterstützung für Betroffene bereitstellen würden. (UNICEF, 13. März 2017)

Nenad Glumbić erwähnt, dass Sprach- und psychologische Therapie im öffentlichen Bereich weitgehend angeboten würden, jedoch sei das Betreuungsverhältnis zwischen professionellen Mitarbeiter·innen und Kindern mit ASD eher ungünstig. Die Eltern der Kinder würden daher für gewöhnlich eine Behandlung im privaten Sektor organisieren und selbst dafür aufkommen. (Glumbić, 21. Oktober 2021)

In einer Studie von 2017 wird erwähnt, dass, aufgrund des relativ geringen Angebots von verschiedenen Unterstützungsleistungen innerhalb des serbischen Sozialschutzsystems, Kinder mit Entwicklungsstörungen oftmals von Mitgliedern der erweiterten Familie und Nachbar·innen erzogen würden. Die Eltern der Kinder seien oftmals auf sich gestellt und würden sich eher auf informelle Unterstützung als auf öffentliche soziale Schutzmaßnahmen verlassen. (NOOIS 2017, S. 58; siehe auch Goluboviv et al., 2021, S. 18)

Im oben bereits erwähnten, von EPALE veröffentlichten Blogeintrag erwähnt die Autorin zudem, dass eine Diskussion der Projektteilnehmer·innen ergeben habe, dass Autismus für die betroffenen Familien weiterhin enorme finanzielle Belastungen bedeute. Zudem würden verpflichtende medizinische Revisionen und der Mangel an angemessenen Informationen es erschweren, Zuschüsse anbieten zu können beziehungsweise zu erhalten. (Bartos, 28. Februar 2020)

Für eine Studie von 2018 wurden Eltern von Kindern befragt, die an zwei großen Autismuszentren des Landes behandelt wurden. Die von den Eltern genannten Behandlungen würden Verhaltenstherapie, Therapie zur sensorischen Integration, kognitive Therapie, Ergotherapie, Physiotherapie, Training der sozialen Kompetenzen und Sprachtherapie beinhalten. Mehr als die Hälfte der befragten Eltern hätten angegeben, dass ihre Kinder mit ASD im Laufe ihres Lebens bereits psychotrope Medikamente bekommen hätten. (Pejovic-Milovancevic et al., 2018, S. 362)

Der Großteil der befragten Eltern erhielte spezielle staatliche Hilfen für ihr Kind, überwiegend in der Form finanzieller Hilfe. Dies habe sich als sehr vorteilhaft erwiesen, da betroffene Eltern für gewöhnlich über finanzielle Probleme aufgrund von Unterbeschäftigung, Verlust des Arbeitsplatzes oder hoher Gesundheitsausgaben, die aus eigener Tasche bezahlt werden müssten, berichten würden. Ein großer Teil der Befragten habe finanzielle Schwierigkeiten gehabt. Die Gründe dafür seien das Fehlen von Gesundheitseinrichtungen in ihrer Heimatstadt und die Notwendigkeit einer zusätzlichen Versorgung, für die individuell aufgekommen werden müsse. Dabei handle es sich beispielsweise um Sprachtherapie, kognitive Therapie und Therapie hinsichtlich der sozialen Kompetenzen, aber auch um die Versorgung mit Medikamenten und Bildungsangeboten (spezielle Klassen, Tutor·innen). (Pejović Milovančeviž et al., 2018, S. 360-361)

In oben erwähnten Studien wird auf gewisse Einschränkungen hinsichtlich der Studienergebnisse hingewiesen. So seien etwa weitere Daten aus verschiedenen Regionen des Landes notwendig, um allgemeine Rückschlüsse ziehen zu können (Goluboviv et al., 2021, S. 20). Auch hätten befragte Eltern in einem Umfeld mit höherer Bildung und höherem Einkommen gewohnt und sich bereits im Behandlungsprozess befunden. Die Studienautor·innen nehmen aber an, dass es viele von ASD betroffene Familien in ländlichen Gebieten gebe, die größere sozioökonomische Probleme und größeren Unterstützungsbedarf hätten, dadurch könne die Studie nicht auf die gesamte Bevölkerung umgelegt werden. (Pejović Milovančeviž et al., 2018, S. 362)

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Quellen: (Zugriff auf alle Quellen am 30. November 2021)

·      ACCORD - Austrian Centre for Country of Origin and Asylum Research and Documentation: Anfragebeantwortung zu Serbien: Lage von alleinerziehender Mutter ohne soziales Netzwerk (Armutsgefährdung, soziale Absicherungen) [a‑11735-2], 30. November 2021

·      Bartos, Erika: ″Sounds of the Heart” in Serbia (Visiting the Serbian Society of Autism), veröffentlicht von EPALE, 28. Februar 2020
https://epale.ec.europa.eu/en/blog/sounds-heart-serbia-visiting-serbian-society-autism

·      Glumbić, Nenad: E-Mail-Auskunft, 21. Oktober 2021

·      Goluboviv, Spela; Milutinovic, Dragana; Ilic, Snezana; Dordevic, Mirjana: Empowerment Practice in Families Whose Child Has a Developmental Disability in the Serbian Context. In: Journal of Pediatric Nursing, Vol. 57, 2021, S. 15-21
https://reader.elsevier.com/reader/sd/pii/S088259632030600X?token=EC56901668AE50F630B470731DE5A7EF29D5431B35FBFFA5899AB04356F3B82C4FA25CD20410BC463C2669226B25275C&originRegion=eu-west-1&originCreation=20211021093937

·      NOOIS – National Organization of Persons with Disabilities of Serbia: Situation Analysis – Position of children with disabilities in the Republic of Serbia, 2017
https://www.unicef.org/serbia/media/156/file/Situation%20Analysis:%20Position%20of%20children%20with%20disabilities%20in%20the%20Republic%20of%20Serbia.pdf

·      Pejović Milovančeviž, Milica; Stankovic, Miodrag; Mitkovic-Voncina, Marija; Rudic, Nenad; Grujicic, Roberto; Herrera, Alexia S.; Stojanovic, Aleksandra; Nedovic, Bojan; Shih, Andy; Mandic-Maravic, Vanja; Daniels, Amy: Perceptions On Support, Challenges And Needs Among Parents Of Children With Autism: The Serbian Experience, in: Psychiatria Danubina, 2018; Vol. 30, Suppl. 6, S. 354-364
http://www.psychiatria-danubina.com/UserDocsImages/pdf/dnb_vol30_noSuppl%206/dnb_vol30_noSuppl%206_354.pdf

·      UNICEF - United Nations Children’s Fund: Living with autism, 13. März 2017
https://www.unicef.org/serbia/en/press-releases/living-autism

 

Anhang: Quellenbeschreibungen und Informationen aus ausgewählten Quellen

·      Bartos, Erika: ″Sounds of the Heart” in Serbia (Visiting the Serbian Society of Autism), veröffentlicht von EPALE, 28. Februar 2020
https://epale.ec.europa.eu/en/blog/sounds-heart-serbia-visiting-serbian-society-autism

„I am the mother of a 17-year-old autistic boy so my life has been intertwined with autism, with all its ups and downs, miracles and hardships. […] I was fortunate to be given another great opportunity in October, 2019, when I travelled to Belgrade as a member of the Mars Foundation delegation from Hungary in the frames of the Erasmus+ PROPAR Project hosted by the Serbian Society of Autism. […]

In the first stage of the program we visited the elementary school for children with autism and other disabilities. The school, which operates in a very posh environment and is undergoing a considerable enlargement, was the first school of this kind to undertake the education of children with disabilities in not only Serbia but also the entire Balkan region. They are primarily aimed at developing the social and communication skills of children and even prepare them for their future studies in mainstream public educational institutions. The teachers apply a holistic approach, take part in scientific projects, and created and operate an autism-friendly medical room on the spot. On top of these, the school organizes specifically themed Olympic Games for the students annually, prepare them for sports tournaments, take the children to camps every year. In addition, they lay special emphasis on nurturing good relations with the neighboring schools, institutions, coffee houses. […]

The third stage of our visit was a daycare center, which was opened in an old mansion back in 1991 making it the very first facility of this kind in the whole country. The instiution provides service mainly to adults with autism, some of the patients spend the whole day here, whilst others join in the afternoon. At present the youngest client is a 17-year-old high-school student, who spends his afternoons in the center. […]

The next important agenda point was the introduction and comparison of state subsidies available and applied in the Easter-European countries involved in this project. The focus was primarily financial support provided to the families of autistic people. Having collected the data we established that there are many similarities and although the amount of support may vary from country to country, autism continues to put an enormous financial burden on the affected families no matter where they live. Also, several participants noted that the availability and use of subsidies is made all the more difficult by the mandatory periodical medical revisions and the lack of adequate information.“ (Bartos, 28. Februar 2020)

Nenad Glumbić ist ein Autismus-Experte an der Universität Belgrad.

·      Glumbić, Nenad: E-Mail-Auskunft, 21. Oktober 2021

„Boys with ASD [Autism Spectrum Disorder] in Serbia officially have full access to education support, both in special and regular schools. Free pre-school education is compulsory for children 5.5 and 6.5 years of age. Elementary education in Serbia (8 years) has been compulsory and free from 1951 and the secondary education is free, but still not compulsory. Therapeutic care is mostly provided by special education teachers who graduated from the Faculty of Special Education and Rehabilitation (University of Belgrade) and Faculty of Medicine (University of Novi Sad). Unfortunately, there are not many special education teachers in regular schools. They usually work in so-called special schools, private sector or they sometimes provide support to regular school teachers. Speech therapy and psychological therapy is widely provided in the public sector, but the ratio between professional staff and children with ASD is rather unfavour. So, their parents usually organize treatments in private sectors, which they pay for by themselves. Music therapy is recognized by the Serbian laws, but there are not many music therapists working with children with ASD. In addition, often some people provide other forms of music stimulation presenting themselves as music therapists.

Boys with autism have access to medical treatments in a way as all other children do. There are no special procedures for them. Medical staff are not particularly trained to provide specific support for these children. There are five medical rooms in different cities which can be used for the preparation of children with autism for medical interventions.

Children with ASD may obtain child allowances and assistance and care benefits. I am not very well informed about the procedure. […] Costs may vary considerably, due to support levels and needs, type of the treatment, available resources in the local community etc.“ (Glumbić, 21. Oktober 2021)

Die Autor·innen sind an den Universitäten Novi Sad und Belgrad beschäftigt.

·      Goluboviv, Spela; Milutinovic, Dragana; Ilic, Snezana; Dordevic, Mirjana: Empowerment Practice in Families Whose Child Has a Developmental Disability in the Serbian Context. In: Journal of Pediatric Nursing, Vol. 57, 2021, S. 15-21
https://reader.elsevier.com/reader/sd/pii/S088259632030600X?token=EC56901668AE50F630B470731DE5A7EF29D5431B35FBFFA5899AB04356F3B82C4FA25CD20410BC463C2669226B25275C&originRegion=eu-west-1&originCreation=20211021093937

„[…] the available data indicate that the largest percentage of families of children with developmental disabilities use day-care services and a financial support (Nacionalna organizacija osoba sa invaliditetom Srbije, 2017). Supportive services related to recognition of the parental role and the child, as well as acceptance and resolution of the child's diagnosis, are most often missing, i.e., there are no generally available forms of psychological support for parents of children with developmental disabilities in Serbia (Rajić & Mihić, 2015). Moreover, another study in Serbia shows that 30–40% of parents of children with developmental disabilities show irresolution regarding the diagnosis, which indicates a great need for support in this field (Krstić, 2013). Then, due to the relatively low availability of various support services within the social protection system in Serbia, parents of children with developmental disabilities indicate that their children are most often raised by extended family members (44%) and neighbors (16%) and point out that they are most often left to themselves and rely more on themselves and informal sources of support than on social protection services (NOOIS, 2017).“ (Goluboviv et al., 2021, S. 18)

„Although this cross-sectional study provided insight into strengths of families caring for children with developmental disabilities, we can say that in order to reach generalized conclusions it would be necessary to obtain data from respondents from different regions of the country. This ensures that different parents' experiences obtained in other cities and institutions can be summarized. In addition, the results could be linked to factors other than those influencing or explaining the results thus obtained, such as: types of support resources available to family, the type of disability the child has, the place the child receives support from, whether the child has been provided with some kind of support service, or not. This opens up opportunities for further examination and finding ways to empower families.“ (Goluboviv et al., 2021, S. 20)

NOOIS ist die Nationale Organisation der Personen mit Behinderungen in Serbien.

·      NOOIS – National Organization of Persons with Disabilities of Serbia: Situation Analysis – Position of children with disabilities in the Republic of Serbia, 2017
https://www.unicef.org/serbia/media/156/file/Situation%20Analysis:%20Position%20of%20children%20with%20disabilities%20in%20the%20Republic%20of%20Serbia.pdf

„Children in Serbia are one of the groups most vulnerable to poverty. The poverty risk rate among children is 29.9 per cent compared to 25.4 per cent for the population as a whole (15). Children are subject to multiple risk factors, with the largest proportion being subject to both poverty and material deprivation. The risk of serious material deprivation is most prevalent in single-parent households (45.3 per cent) and families with three or more children (36.1 per cent). With regard to monetary poverty, 30 per cent children are still at poverty risk even after social transfers.” (NOOIS, 2017, S. 17)

“In 2015 home assistance was only provided to children in 14 per cent of local self-government areas, and day accommodation in 47 per cent, while personal companions were available in 21 per cent of areas and respite accommodation in 6 per cent. Because of the relatively low availability of support in the social protection system, families tend to rely on extended families (44 per cent) and neighbours (16 per cent) for support with care. Parents believe they are most frequently left to themselves and rely more on themselves and informal sources of support than on social protection services. The introduction of specific-purpose transfers in 2016 has great potential for developing community services: a total of 400 million dinars (US$ 4.2 million) were distributed to local self-governments through this mechanism in 2016 and 700 million dinars (US$ 7.3 million) in 2017.” (NOOIS, 2017, S. 58)

„During the piloting process (between May 2015 and April 2017) support was provided to 189 families with a total of 228 children with disabilities (61.5 per cent boys), while eight family associates were engaged to work with families living in multiple deprivation with very complex needs, where there were frequently additional risk factors, such as diseases and disabilities in parents, low socio-economic status, single-parent families, parents with low competences, or lack of family and social support, as well as childhood disability. […] The service piloting and evaluation confirm that the service serves its purpose, strengthens families and prevents separation of children from the family environment. Progress was achieved in over 80 per cent of the families involved, while seven children from four families were moved (1.6 per cent of all the children using the service). The pilot found that the groups requiring most support were single-parent families, families with two or more children with disabilities and families with children suffering from chronic diseases excepting developmental disorders. In almost half the families using the services the source of income was social benefits, while single-parent families and Roma families lived in the worst conditions and worst material deprivation. The pilot revealed the importance of coordination and multi-sector cooperation (social protection, health care, education) and of connecting different actors. The evaluation emphasized that this service shows high efficiency in preventing the displacement of children with disabilities from the family, as well as in family reunification, while it also shows potential in support to early stimulation programmes for children (73).“ (NOOIS, 2017, S. 66-67)

Die Autor·innen sind unter anderem an den Universitäten Belgrad und Nis beschäftigt.

·      Pejović Milovančeviž, Milica; Stankovic, Miodrag; Mitkovic-Voncina, Marija; Rudic, Nenad; Grujicic, Roberto; Herrera, Alexia S.; Stojanovic, Aleksandra; Nedovic, Bojan; Shih, Andy; Mandic-Maravic, Vanja; Daniels, Amy: Perceptions On Support, Challenges And Needs Among Parents Of Children With Autism: The Serbian Experience, in: Psychiatria Danubina, 2018; Vol. 30, Suppl. 6, S. 354-364
http://www.psychiatria-danubina.com/UserDocsImages/pdf/dnb_vol30_noSuppl%206/dnb_vol30_noSuppl%206_354.pdf

„The service system for children with disabilities in Serbia, including autism, covers laws, regulations, institutions and organizations that provide: possibilities of inclusion and proper education (individual educational plans, additional educational help, inschool tutors, as well as tutors outside school, special classrooms); financial aid for these families; additional education and training of healthcare and education providers; reduction of discrimination and abuse. Despite these efforts, children with disabilities and their families in Serbia are very often exposed to financial problems and poverty, difficulties in finding and receiving adequate education and care, stigmatization by their community and surroundings, and different kinds of abuse and neglect (physical, psychical, sexual).“ (Pejović Milovančeviž et al., 2018, S. 355)

„[…], the data were collected from parents whose children are registered and treated at two major autism treatment centers. The sample does not represent children with ASD who are treated in community settings; both healthcare centers in which we conducted our study were placed in two of the largest cities in Serbia and families were mainly living in urban surroundings with higher education and higher income. These families were already included in the treatment process, most of them being cooperative, well informed about their child’s condition, and highly motivated to provide care for their child. We assume that there are many other families living in rural surroundings impacted by ASD, with larger socioeconomic problems and demands, and these results may not be generalized to the whole population.“ (Pejović Milovančeviž et al., 2018, S. 362)

„Nearly ninety percent of questioned parents reported that they used some kind of standard developmental non-pharmacological treatment for their children at some time since receiving the diagnosis. These treatments include behavioral therapy, sensory integration therapy, cognitive based therapy, occupational therapy, physical therapy, social skills training, and speech or language therapy. A very small number of experts are present in Serbia with formal education for applied behavioral analysis, sensory integration and training of social skills. Over half of parents said that their children with ASD were using some kind of psychotropic medication during life, which is consistent with findings of other studies. Almost two thirds of children in Serbia are not included in regular classrooms. They are most frequently using special classrooms for children with disabilities; this is the type of service that educational system in Serbia still offers to children with any kind of disabilities. However, there has been an increasing trend to include children with autism and other disabilities in the general education classrooms, along with their typically developing peers. This was recognized to be a beneficial change for ASD individuals, especially with regards to their social skills. The majority of interviewed parents receive special government assistance for their child, mostly as financial help. This is very beneficial for these parents, because it has been shown that they usually report financial problems due to high out-of-pocket health care expenses, underemployment or employment loss. A large number of our responders had financial difficulties, most likely due to lack of healthcare centers near their hometown, and a need to individually financially provide for additional care, such as speech, cognitive, social skills therapy, and even medication and educational services (special classrooms, tutors).“ (Pejović Milovančeviž et al., 2018, S. 360-361)

·      UNICEF - United Nations Children’s Fund: Living with autism, 13. März 2017
https://www.unicef.org/serbia/en/press-releases/living-autism

„The delays in the timely recognition of early signs and problems of children with autistic spectrum disorders, the lack of centres for the provision of early interventions and the lack of experts in this field, are just some of the problems Serbia is facing. […]

The UNICEF in Serbia Representative stressed the importance of donations made by citizens and the private sector, such as Nordeus, which support UNICEF’s programmes in Serbia.

Living with autism can present a significant burden to families with children with autistic spectrum disorders, and they need to be provided help and assistance in a manner that will ease the daily routine of families.

‚Children with autism spectrum disorders, on the one hand, in small communities have no access to services or have very limited access, and on the other, in big cities they are flooded with a range of services, many of which are not grounded in science and are not evidence based. Therefore, we need guidelines for the diagnosis, treatment and education strategies that provide additional support and help,‘ said Milica Pejović Milovančeviž from DEAPS [Association for Child and Adolescent Psychiatry and Allied Professions of Serbia].

‚Our mission is to promote solutions for people with autistic spectrum disorders and their families, throughout the entire life cycle. Our main goal is the inclusion of children and persons with autism in regular life activities,‘ said Andy Shih from Autism Speaks.“ (UNICEF, 13. März 2017)