Blog: Better Together

Context:

At the end of May 2023, Bill Love and Nic Crosby, visited Slovenia and Trieste in Italy. Nic has been working closely with the team at the Institute for Social Protection (IRSSV) in Slovenia as a member of the project steering group advising on the closure of two institutions, one for people with intellectual disabilities and a second for people with mental health support needs. The visit coincided with an international conference that, in part, celebrated progress made in the closure of one of these institutions, Domn na Krasu, for people with mental health needs.

Nic writes:

We visited the World Health Collaboration Centre in Trieste as it was so close to the Italy/Slovenia border and the conference venue in Lipica. It’s on the old site of the San Giovanni Institution which was closed finally in 2016 after a process that started in 1973. Whilst in Trieste we also visited one of the Community Mental Health Centres, established as part of the closure, and met two of the social co-operatives that played a significant part in the process and now continue to support many people in the Trieste region.

There were a number of things, ideas and work we encountered that stand out from our four days of visits, meetings and discussions.

Language, time zone and politics may be different but at the heart of our shared work are the same challenges and the same commitment to upholding the human rights of people. The challenge of building a mass belief across the whole of society that institutions should not exist remains one we all struggle with. Although we did encounter a very different mindset in Trieste where there was much more evidence of a focus on prevention and community living.

The work may centre on the closure of an institution but the challenge is building inclusive and welcoming communities and getting the support in place that enables people to live a good life. In Trieste the solution was to invest in existing or build new social co-operatives. In England we are working to develop new small support organisations. In Slovenia where many large institutions still exist and accept new people, the solutions are yet to be found. The challenge of a few large organisations running group homes / mini-institutions is common. Whether in Trieste where new organisations were needed, in the UK where small new organisations will be key to successfully supporting people to live better more independent lives in their community or in Slovenia. New small, person centred, supported living and separated housing provision will be common.

Learning about the social co-operatives that continue to support many people in their homes and into work in Trieste was inspiring. Co-operatives are an alternative to for-profit and existing non-profit organisations in the UK which we have only explored in a limited way. The focus on employee ownership, flat management and participation they evidence is something we will be exploring with their help over the coming months – watch this space!

Leadership remains a stumbling block for all of us. In Slovenia, where the agenda is the battle to close institutions, the challenge remains. Winning the ideological discussion that institutions should be consigned to history and supporting those who are courageous enough to raise their head above the parapet to keep going and not lose sight of the vision. This battle has echoes of the challenges in the UK where too many continue to resist the move to ordinary lives and community-based support for those continuing to be incarcerated in secure institutions. Although different contexts the need for visionary and courageous leaders is the same.

Good person centred and respectful support often means that a person who has left an institution needs less and less support over time.

A focus on prevention, with open access and self-referral means a good opportunity to forestall challenges people may face if they do not get the right support early enough.

In Trieste there are four forensic beds, two at each of the two general hospitals. Admission can only be for seven days and further extensions are set by a Judge…the emphasis is on rehab/recovering in the community.

Individual health budgets that can be used to fund housing and support, along with job grants that can be used individually, provide a basis for supporting people to get back out into community life, feel a valued citizen and have the chance to live the life they choose.

Values remain the driver of change and a commitment to human rights is central. It drove the closure in Trieste, it drives our Small Supports programme, NDTi’s work more widely and it underpins the energy and effort from the minority championing this work in Slovenia.

In Trieste, although there will always be challenges such as those being faced currently by changes in management and leadership, there was a clear and very different culture underpinning the way professionals approached supporting people back out into the community. People viewed living at home, with access to employment, a safe place to live and necessary expert support as the building blocks for recovery. Recovery was not seen as something that can happen in hospital.

Even though language and different styles in presentation may create challenges at a conference, the fact that the event was completely over-subscribed and so many people wanted to share their work should be seen as a massive positive. There is a big and growing community of people all of whom want to see the end of the institutionalisation of disabled people. Thank you to ENTER Mental Health, IRSSV, Faculty of Social Work at Uni of Ljubljana and everyone for making us so welcome at the conference and for giving us a brief chance to share the work on Small Supports organisations in England.

Activism is the root of a different mindset and culture

As much as the closure in Trieste was aided by new national laws, like Rule 180 in 1978 which set out the closure of all mental health institutions, the real deep lying change has its roots in activism. The activism of Franco Basaglari; of the people in the institution; of the gathering of people from across Italy, like our friend Roberto Mezzina in the 1970s; of the opening of the doors and no more locks; and most vivid, in the art still displayed on the old campus. This is where the real change happened. This activism is the root of the different mindset and culture we encountered at the Community Mental Health Centre.

Whilst visiting the campus we saw a large poster made up on flyers from parties held on the campus in the 1980s. It was explained to us that at this time there were raves, concerts and get-togethers most evenings and right through whole weekends. If you attended you did not know who was living in the institution and who was simply joining in the event. The message was, is and continues, to be clear. Despite recent challenges, we are one community, we live, party and share.

Reflecting on what we encountered in Trieste, in Slovenia and then thinking about England.

We may share the same challenges, but we could do with a bit more of this activism, a bit more of the collective coming together and power this brings. What institutions such as those we know represent, anywhere in the world, has to be consigned to the past. This won’t happen by changes to the law or changes to the government, it will only happen if we rise up and say ‘no’ and throw the doors open!

Bill and myself would like to thank everyone who made us very welcome, for giving time, sharing experience and work and for giving us much to think about!

If you would like to know more about Trieste, their community-based support to people and the role of social co-operatives please get in touch with Nic Crosby on nic.crosby@ndti.org.uk

We are planning on hosting some online meetings and discussions.