Museum of Madness, Trate
In Museum of Madness we share the story about Slovenia being one of the most institutionalised countries in the world. We aim to raise awareness on the right of people with disabilities to live independently and be included in community. But also to identify people’s needs and upon that establish first community services in the region, where is the largest share of institutionalised. The idea is to show how to shift from institutional to community services within existing public budgets.
Village Trate, SI- 2213 Zgornja Velka, Podravje and Pomurje regions, north-eastern Slovenia
We will implement the project in a region, in which the first and by now the only institution in Slovenia was closed. However, the development of community services which would serve as a replacement for institutions, has not been successfully obtained. The practice of institutions has become a self-explanatory solution, to the extent of the decision makers not seeing beyond the institutions. The common vision for a long-term care funded by local authorities is still building new institutions, which is against Article 19 of Convention of Rights of People with Disabilities (CRPD). With this project we will bring in focus needs of people with disabilities living in rural areas and promote their right to live independently and being included in the community.
We will use different methods and techniques, such as person centred planning, empowerment, advocacy, democratic forum, to bring together different voices and to advocate and empower people with disabilities. Our primary target group are people with disabilities, who are pushed to the edge of society and are often invisible, excluded and forgotten in institutions or threatened to be institutionalized in the next 3-5 years. We will also focus on the relatives of the disabled or the elderly, who are exhausting themselves at home because of the lack of services within a community or are forced to put their loved ones in institutions. We will inform the politician decision makers who are not aware of their own infringement of the CRPD.
1st step will serve as an identification of the needs, an experienced social worker will prepare personal plans with at least 35 people who need support to be able to live independently in community. In 2nd step we will focus on the needs of people in their local environments and test possible community services. Together with various stakeholders we will identify possibility of collaboration between the municipalities in the region regarding guaranteeing the funds for providing services, which support people’s needs, within a community. In 3rd step we will present community services tailored in pilot upon individual needs and coordinate the preparation of the action plan for the establishment of community services supporting independent living in community for people with disabilities.
A new network of stakeholders will develop a regional plan for community services. To specify this furthermore:
- personal plans with at least 35 people will be designed
- at least 6 consultations or assemblies in the local area will be carried out
- regional network of advocates for deinstitutionalization will be established
- local news on achievements (reaching the households) will be issued
- new services tested and established in community (pilot)
- a plan for developing community services within the next five years will be designed
When the project is over, the key stakeholders in the region will be aware that building institutional capacities for long-term care is counter human rights, people will be able to ask for first community services and sign tripartite agreement
Since people with disabilities present a silent and invisible minority there are no specific political arrangements focusing on their rights. In the current situation they do not have any influence over their lives. Having to leave home without one’s wish is the worst interference of a person’s right to decide about their own life. It is the worst interference of a person’s freedom. People with disabilities will be fully engaged in this project. Based on the person-centered plans we will carry out a pilot and test which services would respond their needs. These interventions will help us to design and establish first community services already during the project. With this project we would like to gain the funds to support inclusive participation in democratic process.
The Museum of Madness was established by locals, who were raised next to the one of the biggest total institutions in Slovenia. We are personally linked to the story since our ancestors worked in this institution. Only several years after the closure we were able to understand that the empty castle should become a memorial space of difficult past and a place of social change for a better future for all people with disabilities. Our idea got a strong support from experts in deinstitutionalization. In our team we serve this idea as volunteers. We have already achieved a lot, but to reach a serious movement towards changing the way decision makers think of the problem, we need funds to employ a person who will on daily basis work towards this. We see the museum as a motor of social change.
Funding requested from Civic Europe
32.000 € employment (12 PM)
3.000 € travel expenses (transportation for the people with disabilities)
2.500 € brochures and other materials
2.500 € catering
1.200 € computer, mobile phone
2.500 € business plan for establishing the regional centre for deinstutionalisation
1000 € payment for lecturers
Is the idea understandable? We had problems to present the idea very briefly :-)
In the project we found out that, there are cases of the hidden homelessnes in our community. It seems that homeless people in the countryside are less visible than in the urban areas. The main issue was how to approach immediately and how to convince the decision makers and public officers that people live in poor and unbearable conditions? In the mid of July we organized an assembly with different stakeholders on the local level and discussed about the identified issues. The representatives of the municipality Šentilj, of the Center of Social Work Pesnica, leads of the local units of the project Elder for elder, local representatives of the Red Cross, two users and two mothers, who’s children are disabled and representatives of our Museum of Madness took part.
Assembly on homelesness in our community.
The community social worker from the Regional center for deinstitutionalization presented the recent results of the project and her role in the community. Then everyone explained his or her position and how she or he could contribute to resolving the issues. What we learnt? That, it was the first time that these various stakeholders were sitting at the same table and listening to each other. All of them seemed motivated to do something together. However, we found out that much more effort and time should be invested into the work with public servants to bring them closer to the people. It was really powerful to have people in need at the same table. Their presence and contribution in discussion helped us staying focused.
In the summer, we organized an art workshop for local community. We have also organized a van to bring people with disabilities, who can’t use public transport because it is rare and not accessible. It was not only about creating together on the beautiful summer day and meeting each other, we also tried to express what community means to each of us. In the evening there was a punk rock band giving a concert. We were dancing, singing and spending a super time together! However, we missed more people from the neighbourhood.
Assembly on what is a community.
From May, a group of local women meets weekly in the Museum, for gym and from September they started also with the knitting hours. We are happy to share our rooms with them. We found these activities as a great opportunity to talk about the social issues and community needs. These women are kind of a bridge to the local community.
A gym is new activity in our community.
Over the summer, we were continuously designing personal plans, which help to organize support in community according to individual needs and support people with disabilities to live independently at home. Besides helping them to get to the doctor or to the center of social work, we were also supporting them to become aware of their human rights. It was great to see how people are getting strength through the communication and common searching for solutions.
However, we have learnt that politicians on the state level are less interested in the needs of people from rural areas. We have learnt also, that on the local level, decision makers are not aware of the needs and of the possible solutions.
We are looking forward to sit with the various stakeholder at the same table again in the next weeks!
During the summer when the Covid-19 measurements were less restrictive, we have organized several events. In July, we have presented our project at the Ministry of Labour, Family, Social Affairs and Equal Opportunities in Ljubljana, Slovenia. At the meeting we have informed the representatives of the Office for elderly and deinstitutionalization and of the Social Protection Institute of the Republic of Slovenia (IRSSV) about the goals of our project. We discussed about the systematic need for change in the area of community care, stressing that people from rural areas have additional needs, related to commuting, distance to services etc.
How could we make decision makers to listen to us and support our solutions?
We have also met with the head of the biggest institution for long-term care for people with mental health issues and were discussing about possible future collaboration, e.g. searching for common activities. In August, we met the state secretary of the Ministry of Labour, Family, Social Affairs and Equal Opportunities. We presented him recent findings of the project and the need of the continuation of the activities, which we only started in the Regional centre for deinstitutionalization.
As an NGO working in the field we managed to delivered the message about the community needs and the possible solutions to decision makers on the state and local levels. They have all welcomed our efforts. However, it was clear again that the concept of deinstitutionalization is differently understood, when comparing efforts and activities of the NGOs and people with disabilities with those of the decision makers and representatives of the institutions.
Gathering of researchers, experts, experts in experience and people from community
In June we organized a 3 day International Conference Alps Adria Danube Network for deinstitutionalisation, with participants from Slovenia, Croatia, Serbia and Italy. The conference was opened by the state director of the office for elder people and deinstitutionalization at the Ministry of labour, family, social affairs and equal opportunities. Representatives of local and state authorities, also a member of EU parliament were guests at the round table dedicated to the support services in rural areas for elder and people with disabilities.
Credits: Jakob Vogrinec
We heard great lectures from researchers, experts, experts in experience. Beside that we organized a concluding session on-line to be able to attract people from abroad who were not able to join us due to epidemics. The conference took place at the castle yard, open air, on the first day 70 participants arrived at Trate.
Credits: Jakob Vogrinec
For more pictures from the conference please check the link.
On the 4th of July the Radio Agora played the recordings from the round table, which took place at the conference. You can check it here: “Dezinstitucionalizacija ni kaprica ampak obveza” I “Deinstitutionalisierung ist keine Laune, sondern Verpflichtung”
We are happy to share some updates of what was going on from spring until summer started in our Museum of Madness in Trate, Slovenia.
Credits: Branimir Ritonja
Work with media
In the first months we were very busy with promoting our project and the right of people with disabilities to live independently in the community. All the biggest and many local media presented our project. For example National Radio-Television of Slovenia showed a 10 minute broadcast entitled Open the institutions! about our project within their weekly programme Tednik. Also major Slovenian newspapers covered our work, for example Delo published Among those people, within those walls; and Večer: Social worker Simona Ratajc: In the institutions there are people, who don’t want to be there!.
We fostered public dialogue about community care for people with disabilities, old people, people with long-term mental health problems, about their human rights, challenges of epidemics and services adopted to needs of people in rural areas. We presented equally the voices of professionals, people from the community and people with experience with institutions.
Only when epidemic restrictions allowed us we organized the first community coffee meeting. After that a group of older women organized a weekly gym class in the castle. After the morning gym we meet for a coffee and discuss the needs and providing services in the community. We also organized the presentation of a dog assistance and technical equipment for elder and people with disabilities.
Credits: Jakob Vogrinec
Cooperation with NGOs, students and experts
We presented the project at the 1st Council for NGOs active in the field of mental health, which took place in the castle yard at the end of May. We stressed the importance of rights of people with disabilities and gave voice to people with institutional experiences. We found very powerfull to hear stories and experience from people with disabilities organized in civil society organizations. However, Museum of Madness was the only organization founded not by experts or people with disabilities, but by local people, aiming to build a bridge between all stakeholders.
In May expert groups from 2 big non-governmental organizations (Ozara and Želva), working with people with disabilities, visited the museum and wanted to learn about our Regional center for deinstitutionalization .
At the end of June we held a program for a group of students from the Faculty of social work, University of Ljubljana. Students of social work learnt about our project and community work. Students especially appreciated that they heard stories from people who survived institutions and that they were able to ask them questions in person.
Meetings with local and state authorities
We carried out several meetings with local and state authorities about the needs of people in the community, about providing care in community, especially in the rural areas and we made an agreement for continuous work. On the 13th of May we presented Regional center for deinstitutionalization to the state secretary at the Ministry of labour, family, social affairs and equal opportunities, who visited us for the first time at our location in Cmurek castle
Community social work and personal plans
We worked individually with people in the community, people with disabilities and their relatives, we prepared personal plans and resettlement plans. Through our community work we identified homeless people in our area. We learnt about hidden, unseen homelessness in the rural areas. We coordinated the support services for them by working with state offices and municipalities.
We have learnt so far that a vivid community can make changes. However, a lot of effort is needed to change the minds of authorities!