The meeting in Croatia was held in Vinkovci the 25 th and 26th September 2014. Attend the meeting Felice Bisogni, Stefano Pirrotta and Silvia Policelli from GAP organization; Zana Skejo-Skoric, Tomislav Velìc, Maria Crnjac from Bubamara association; Natalija Olesova, Dana Migaliova and Andrew Šleivys from Viltis association; James Rutherford, Linda Barrett and Briony Williamson from Enable Scotland.
The first day of the meeting we visited two service providers: Mala Teresa e Golubica Association situated respectively in Vinkovci and Vukovar. The second day Zana Skejo-Skoric, Tomislav Velìc, Maria Crnjac presented some of the services provided by the Bubamara’s Association. In the afternoon and evening we participated in a party with popular dances and sings organized by the clients of Bubamara’s day centre.
The first day of the meeting we visited two service providers: Mala Teresa e Golubica Association situated respectively in Vinkovci and Vukovar. The second day Zana Skejo-Skoric, Tomislav Velìc, Maria Crnjac presented some of the services provided by the Bubamara’s Association. In the afternoon and evening we participated in a party with popular dances and sings organized by the clients of Bubamara’s day centre.
The visit of the 25th of September started with a meeting with the operators and the users of Mala Teresa centre. After that we met the operators and the users of the service provided by Golubica Association. During the visits we discussed whit the staff of these two organizations significant issues related to the de-institutionalization process actually in progress in Croatia. The same issues have been explored by the project team members during the second day of the meeting. In particular in the second day of the meeting we talked about the problems faced by the families dealing using services in the rural area.
1th Day - Visit to Mala Teresa centre in Vukovar
Our feeling in visiting this renovated mental hospital are complex. On the one hand we see a renovated structure more similar to a community based services than to our representation of a “total institution”. On the other hand lack of productive activities within the centre , the net on the stairs for preventing suicide and the impossibility to access the third floor of the leaved us the impression of a “dark side” of the organization that is still present. The director tells us that the 80 percent of the users have a family but there aren’t services providing support at home and the family members leave the persons with mental problems in the centre. In this rural context, with a lack of community based services Mala Teresa has been seen for many years as the “forced” pathway by the families that feel not to be able to take care of their children with disabilities at home. The director says that recently many psychosocial rehabilitation activities have been included in the program of the centre. However this activities seems not effective in promoting the integration of the clients of the centre within their community. People, in fact, are involved in activities that are realized within the centre and aren’t engaged in any kind of activities connected somehow with the rest of the community. However Mala Teresa is trying build a network of "partners" to support families and to reduce the number of its patients in view of the de-institutionalisation process going on in Croatia. In this sense the coordinator said that Mala Teresa is implementing different European projects to found resources to realize innovative activities addressed to support the families of persons with disabilities within the community. The management of the centre, in fact, is very due to the high costs of residential services providing assistance 24 hours a day. Making partnership with other organization however seems not easy as for the centre This is complex as the other local care service providers and the families look at Mala Teresa as a not reliable and reclusive institution.
1th day- Visit to the War Memorial of Vukovar.
Within the associations for disabilities there are many disabled persons due to war injuries. The Region of Vukovar and Siriem has been in fact deeply involved in the Croatian war of independence of the 1991. The war has been based on the struggle between the forces allied with the Republic of Croatia that has recently declared its independence and the Serbs militia allied to the Federal Socialist Republic of Jugoslavia. The fights concentrated near the city of Vukovar that was besieged for 87 days since August to November 1991. The siege finished with the defeat of the local garrison of the Croatian National Guard and the total devastation of the city made by the Popular Yugoslavian Army helped by the paramilitary Serb Militia. The 20 of November 1991 the Serb Militia entered the Vyukovar Hospital taking 200 persons that was transported to a farm located ten kilometres far from Ilok. The persons taken from the hospital, reclosed in an hangar of the farm for the night, has been killed in the morning and burned in a mass grave. Nowadays the farm and the hangar held a memorial of the war that project team members visited to know an important part of the recent history of the local area where Bubamara works.
1th Day-Visit to Golubica Association
In the morning of the first day we visit , also, the Golubica Association situated in the centre of Vukovar. Golubica is an organization founded by a group of parents of persons with intellectual disability. We met the President and co-founded of Golubica who presented us some of the services provided. In particular we visited a day care centre and a training service for the independent living and a group apartment. The association provides a day centre service where the persons with intellectual disabilities have the possibility to meet other people and to spend their day, doing a variety of activities such as sports, arts and handicraft. The association provides also a residential service inspired by the independent living model: a supported group apartment where people with disabilities can live outside their families. The guests of the group apartment are helped by professional assistants in doing different daily activities: cooking, washing their clothes, dressing, getting out of the house. The group apartment hosts about 6- 8 people. The economical resources for building the structures and manage the services have been collected through the donations from the members of the local community.
We visit the apartment, located very near to the day care centre and we meet three of the persons living there. Within an internal court of the apartment we notice a garden cultivated by operators and users. We had brunch with the operators and the guests of the apartment while they show us their rooms explaining us their daily life in the apartment.
The president tells us that involving the family in organizing the independent living services is not easy. The most of the clients living in the apartment, in fact, don’t meet their family since long time. Some family live far away from Vukovar but in the most cases “the parents are not interested to having news about their sons and they feel confident in leaving their sons or daughter in the group apartment as they know they stay well”. “Some family just paid for the permanence of their sons in the group apartment but don’t want to know what happen inside” the president adds. In this regard we conclude the visit of Golubica services with some questions: Would be useful to involve the family members in organizing the independent living services? How to it? Do the family members, as well as the persons with disabilities, face difficulties in reorganizing their “independent life”? How to support them in this process?
2th Day – Presentation of Bubamara’s projects and services
In the first part of the second day of the meeting Zana Skejo Skoric presents us the services and projects provided by Bubamara. The association provides services for persons different kind of disability: physical and intellectual. The organization is divided in four sections: psysical disabilities, intellectual disabilities, cerebral phalsy and muscular dystopia. Each section has a coordinator that together with the president of the Association, Tomislav Velic, is a member of the board of directors of the organization.Main aim of the Association is to organize contexts where people with mental and physical disabilities can express their desirers and needs. In this regard Zana tells us that the services are offered to provide “more that only technical and transport assistance within a region of small villages not well connected to each others”. The Association in particular provides personal assistance services, teaching assistance services at school, physiotherapy’s services. All the services are provided with a special focus on supporting people in having a life integrated within their social context. Furthermore Bubamara provides a day centre service where people with disability can stay from 8:00 am to 9.00 pm, every day. Bubamara day centre hosts about 20-25 person. Within the centre the clients can do different activities such as cooking, having lunch and dinner but also painting, doing handicraft and singing. In this way the day centre gives to its clients the opportunity to build social and affective relationships with their peers. The family members are involved as well and specially during the parties and the karaoke activity organized each week the centre is full of people coming from Vinkovci and the surrounding villages. While their sons or daughters with disabilities sing, dance and have fun, parents and siblings can have a rest in one of the spacious room of the centre talking with other members of their community and having fun as well. Bubamara day centre seems well integrated in the entire local community and organizes important event addressed to the whole community as festivals and concerts. All activities are free for the users. The organization provides also a mobile service that every week visits the families at home in the villages. In this regard Zana says that the “supervision” of the implemented services is very important within Bubamara: “we need to know if the services provided are really needed to understand what the families and the persons with disabilities really need”. In this regard Bubamara is implementing a pilot project that give to the families the possibility to choose the services to use. Each family involved in the project has a voucher to spend choosing between different social services. The project involves 60 families and it is founded by the European Union. Giving to the families the possibility to choose the services they use and to manage them represents an important learning outcome emerging from the YAID project. During the meeting we start to discuss this issue. How to understand the main problems faced by the families ? What services are most useful and effective? What tools the can service providers can use to empower the satisfaction of the families using the services?
The vouchers system seems to give the possibility to verify the family requests , and to understand the main problems they face in their daily life. . Zana says that unfortunately the government, in Croatia, looks to the assistance as strictly related to help the persons with disabilities and their family members surviving and doesn’t invest in innovative projects experimenting different ways of supporting the families in facing problems related to their social integration. Bubamara and other association use the international foundation and the European programs to improve these kind of projects. In conclusion of this first part of the meeting we agree that to explore the daily problems of the families represents a complex task for government and as well for the organization providing services. In fact it is not easy to change the representation of the persons and the families with disability as users that need just to be helped to survive.
2th day - Discussion about the monitoring form’s draft.
In the second part of the meeting we work on the draft of the monitoring form. The monitoring form has been proposed by the coordinator organization GAP as a tool to collect the feedbacks of the partners after the first year of the project. The draft of the monitoring form, made by questions exploring the research part of the project, the visits of the services and the learning results of the project, it is discussed by the partner organizations .To this regard we talk about the research process and especially about the realization of interviews. The realization of the interview is recognised by the partners as the hardest and more useful part of the project. On the one hand the families members of persons with disability seems not used to talk about their emotions and on the other hand the interviewer, often find difficult to listen them about their experiences. About the relationship between family and operators Natalia said “the families need to trust in who realizes the interview”. Felice underlines that also with persons that the interviewers knew since many years has been difficult to ask to the families their ideas about the services. Linda says that has been difficult also because the parents are, often, disoriented and tired of moving from a services to another one during their son’s or daughter’s life. This one is an issue discussed in different meetings of the project related to the end the finish of the compulsory school.Furthermore Natalja notices that the parents, sometime, ignore the different kind of services available. In this regard we spoke about the utility of activate what we called “navigation services” whit the scope to orient the parents. In the most of interviews, in fact, it emerges a feeling of fear for the future and of not being able to manage their life. It is important in this regard to organize meetings to involve the parents and the persons whit disability in building a life project. After this discussion we start to discuss about the realization of the compass intended as the final product of the project. The compass, we say, would be a report of the project presenting some recommendations to realize effective services addressed to the daily problems faced by the families of persons with disabilities. These recommendations would be based on the the intervention criteria developed during the project . To define these criteria we started to explore the problems of the family emerging from the interviews.
What are the main problems faced by the families in their daily life?
The social isolation seems one of the greatest problem faced by the person with disability and their family members. In the interviews emerges the loneliness that they experienced in their social contest and in the relationship with the social services as well. In this regard the services’ fragmentation let the families alone in building plans for their future. Furthermore the services rarely intend the socialization activities as useful objectives to pursue and for the family it is difficult to build their social integration.
To this regard Felice proposes as an useful tool a sort of “family card” collecting the story of the families and their relationship with the services they get in touch during the time. . Dana talks us about the cases management services implemented by Viltis with their clients underlining that this kind of tools can improve the quality of the services.
Rethinking the realized interviews others problems emerged: the lack of information, the request of respite care services for the parents, of employment for the persons with disability and of the possibility to live independently. These are important findings to consider to the develop the compass: a set of criteria of intervention. In the end of the meeting we scheduled the work to be done: the latest interviews and a the monitoring forms to be completed for the next meeting in Rome.
