ENTER Conference Report 2023
Conference held in collaboration with the Fakulteta za socialno delo Univerze v Ljubljani (Faculty of Social Work, University of Ljubljana), Inštitut RS za socialno varstvo (Social Protection Institute of the Republic of Slovenia), Dom na Krasu (Home in the Kras), Sonček – Zveza društev za cerebralno paralizo Slovenije (Sonček - the Cerebral Palsy Association of Slovenia) and Društvo SVIZCI - Uporabniško društvo za duševno zdravje (Association SVIZCI – User association for mental health).
The ENTER Conference 2023 was held on the 1st June 2023, at the Conversano Congress Centre, Maestoso Hotel, Lipica, Karst, Slovenia. The conference was attended by 180 delegates including Minister SIMON MALJEVAC of the Ministry of solidarity-based future/Ministrstvo za solidarno prihodnost and ANDREJ SILA, the mayor of the Municipality of Sežana/župan občine Sežana. The conference marked the 40th anniversary of “Sonček - the Cerebral Palsy Association of Slovenia”, an NGO for people with disabilities with a long experience in providing support in group homes and recently also with adapted apartments, and celebrated the successfully completion of the EU co-funded pilot deinstitutionalisation project in social care “Dom na Krasu”.The event was held bilingually in English and Slovene with translation from Slovene to English and vice versa provided.
The theme for the conference was "Deinstitutionalisation", a word that is difficult for most people to pronounce. Frequently people stop somewhere in the middle and say, “well…, that word”. Sometimes, it also signifies that they find deinstitutionalisation difficult to deal with. By the end of the 20th century, deinstitutionalisation became a universal policy of international agencies, such as the World Health Organisation, and the right to live in the community, along with others, is an important part of the United Nations Convention on the Rights of Persons with Disabilities. So far, these reforms in mental health care have taken place in most Western European countries. In recent years, many Central and Eastern European (CEE) countries, with European policies as a driver, have begun the process of transition to community-based care; this is true for Slovenia. Over time the landscape of care changed immensely from large institutions to group homes, day centres, employment support schemes, advocacy, user organisations, peer-support, relatives’ groups, personal assistance, coordinated care, outreach crisis services, and mobile teams. Many new forms of care have developed and continue to grow in the void, as the need for different types of support in the community emerge. However, living in the community poses challenges that may also perpetuate isolation, stigma and segregation.
The conference concentrated on accomplishments in the deinstitutionalisation process, exchanging best practices, research findings and training experiences. It offered a space for critical reflection and transformative ideas on how to overcome contradictions of transition, such as declarative political support for the deinstitutionalisation processes, whilst increasing the capacity of locked secure wards in adult and even children's social care homes. Challenges such as resistance in neighbourhoods, perpetuating institutionalised mentalities and practices in the community, and themes that arise at the crossroads of multiple exclusion (youth, old people, parenting, alcohol and drug use, dual diagnoses, homelessness, and others). Particular attention was paid to the alternative ways of managing risks without coercive practices, highlighting various European user-led initiatives (especially peer support, peer advocacy) associated with deinstitutionalisation.
Papers were presented on the subthemes of:
1. “Only life, nothing else”: from housing to full citizenship Establishing the conditions for independent living of people with disabilities does not only imply providing excellent personal assistance services, personalised support and accessible housing for all, but also finding ways to escape the custodial authority of either institutions or community structures. The aim of this theme is to identify best practices that create the conditions for transitioning from institutions to the community, employment supports that enable the transition from service recipient to colleague, and those best practices that support a person in escaping the world of diagnosis and errors into a world where recovery is possible. How to move from the status of a ‘patient’ and resident of care institution to the status of a full citizen?
2. Challenges and contradictions of transition from institutional to community-based care This theme will critically reflect on the challenges and contradictions that usually accompany the deinstitutionalisation processes, such as the phenomena of trans-institutionalisation and re-institutionalisation (taking place in spite of clear demands from the EU and international bodies), isolation and loneliness of people living in the community, institutional culture in the community settings, fragmentation of services, and others. We will welcome valuable national and international experiences of deinstitutionalisation and, in particular, transformative ideas from the systemic to the service and individual levels on how to overcome these challenges and transform them into inclusive and human rights-based practices.
3. Moving away from coercive interventions towards human rights-based practice In the past decades, there have emerged increasing concerns about coercive practices, such as manual, physical, and chemical restraint and seclusion. This theme explores the issues that have been challenging in various fields, including care of the older person, people with intellectual disabilities, and people with mental health problems amongst others. Dwelling on ethical imperatives is not sufficient, there is an urgent need to reduce and finally abolish these practices and support human rights. Some of current initiatives in this direction are associated with deinstitutionalisation, some not. However, there is a need of finding solutions on different levels: namely, the one of methods, approaches, organisational changes, changes in organisational culture and policy. At the conference, we will seek to explore what has been achieved so far and what are the necessary further steps. Various approaches such as trauma-informed care and others, will be explored to analyse how people can recover from the long-term experiences of coercive practices.
4. “Being a neighbour and co-citizen”: Working with communities and neighbourhoods towards destigmatisation As mentioned earlier, even after resettlement to the local environment, people often remain marginalised, stigmatised, isolated, and surrounded only by other fellow residents with disabilities and staff. Local residents often oppose and resist the resettlement of people with various disabilities to their neighbourhoods. The relevant question in deinstitutionalisation is how to bridge the barriers that separate those who are labelled “mad” from those who appear “normal”. How to connect with local communities? What are the best practises and methods for resolving situations that arise in neighbourhoods (e.g., outreach work)? How to respond to discrimination and how to conduct anti-stigma campaigns? How to talk about this ... “complicated word” in simple terms?
5. Peer support as an inevitable component of deinstitutionalisation User-led initiatives have always been and still are inevitably associated with deinstitutionalisation, but their role is often neglected. Yet, user-led, participatory, and advocacy practices are the most valuable and indispensable companions of deinstitutionalisation processes, and they represent the most dynamic, insightful, innovative, and experience-based projects of deinstitutionalisation (user-led crisis centres, peer support, peer advocacy, anti-stigma campaigns and other ways of overcoming barriers within communities, user-led and participatory research practices, and others). Moreover, without simultaneous strengthening of the user perspective and initiatives, deinstitutionalisation cannot really be fully achieved, the changes remain only technical, and they inevitably lead to the reproduction of the institutional culture and the culture of dependence. Concepts such as peer support and peer advocacy highlighted people's own agency in their lives and their own definitions of support. User-led initiatives too often struggle, constrained by inadequate funding and status, and the devaluation of the user knowledge by the mainstream mental health system. This subtheme calls for contributions from people with experience/user associations/initiatives to share their experiences, achievements, research findings, own autonomous practices and/or ways of collaborating with the mainstream mental health system and academia while keeping their autonomy. The theme is also seen as an opportunity to discuss how peer work, based on the principles of hope, reciprocity, equity, and inclusion, can be strengthened to gain greater recognition and remuneration.
6. At the intersection of multiple risks and opportunities: a demand for complex, inclusive and integrated care The life stories of people with long-term mental health problems are complex, and their needs are often overlooked, usually due to a lack of diverse, intensive, inclusive, and integrated community support and a lack of addressing the real social causes of their mental health problems. This subtheme involves several points that we would like to highlight: it is about addressing multiple discriminations and inequalities in mental health, and second, we would like to highlight the need for an intersectional perspective. People with long-term mental health problems are among the poorest and most socially excluded European citizens. Research also shows that they die earlier than others, mostly from somatic diseases that are the result of inequality, discrimination, and poorer access to health care. An intersectional perspective highlights the diversity, complexity, and specificity of life contexts. People with long-term mental health problems are maybe addicted to alcohol or drugs (dual diagnosis), homeless, parents and caregivers, old people who face age-related barriers in addition to mental health problems, LGBT+, migrants, victims of violence, have other disabilities, and others. These contexts can involve a greater risk of institutionalisation and exclusion, but they can also be a source of resilience and better opportunities.
7. Training/education to support the transition from institutional to community-based care and working in multidisciplinary teams in integrated community services One condition for running new services in the community is the availability of skilled staff. Many staff members currently working in the institution, if properly trained, are able and willing to work in community-based services. The paradigm shift involved in the transition to community strongly affects professional roles of employees. Experience shows that close collaboration and investment in staff are beneficial to the deinstitutionalisation, in the sense of helping to bring everyone on board, involved and responsible for the process of transformation. What would be good training practices? How can professionals and staff from diverse professional backgrounds be trained to work effectively in multidisciplinary teams in integrated community services? How can people who have experience with mental health problems and institutionalisation be involved (and paid) as trainers in training? How can training and action research/evaluation activities be linked?
You can download the book of abstracts of the presentations from the conference here.
Local committee: Dr Mojca Urek, Dr Andreja Rafaelič, Urška Sorta, Dr Jasna Murgel, Nika Cigoj Kuzma, Juš Škraban, Dr Andraž Kapus, Kaja Zoran, Katarina Mauch, Rene Vremec, Brigita Obreza, and Arijana Cengle.
ENTER Steering Group: Prof Marja Kaunonen, Dr Lene Lauge Berring, Dr Emmanuelle Jouet, Dr Lidia Zabłocka-Żytka, and Dr Mark Monahan, and Dr Mojca Urek.