On 16th April, the European Network on Independent Living – ENIL, in the framework of the European Coalition for Community Living – ECCL and in partnership with Nic Crosby (GatherBuildWork), organised a successful webinar on European deinstitutionalisation reforms. The webinar, titled “Deinstitutionalisation in Practice – A Conversation with Practitioners and Disabled People”, brought together speakers from Poland, Greece, Slovenia, the Czech Republic, United Kingdom and Slovakia, and was attended by almost 100 participants. Below is a summary of the discussion, which took the form of a Q&A session. A follow-up webinar will be organised in autumn, in order to discuss how the various DI reforms are progressing and what are the current challenges. You can watch a recording of the webinar here.

Slawek Besowski, Foundation Centre for the Rights of Persons with Disabilities (Poland)

Slawek starts by explaining that DI is becoming a major topic in Poland, as the Polish government knows it cannot access EU funds without first presenting a DI strategy. With this in mind, those involved in crafting the strategy looked to the UNCRPD and its general comments for guidance as they considered it best practice. In February of 2020, the Polish ministry for family and social policy invited over 100 different stakeholders, ranging from persons with disabilities (PWD) to other NGOs and national actors together to discuss a DI strategy.

The groups were divided into different sections, to work on areas ranging from homelessness to DI. The DI group was a mix of PWD, parents, carers etc., its findings and conclusions were informal but were partly used along with the other groups to inform the government’s Poland2020 strategy, however the groups received no formal or technical support from the Ministry of family and social policy. Disability rights is still not fully understood in Poland, with the DI working group initially suggesting that 10% of children should remain in institutions, but this idea was eventually scrapped after pushback from disability activists.

After being asked by Ines, what the DI working group spent most time discussing, Slawek responds it is unclear, as the topic is so varied. They have worked out stances based on the UNCRPD and its general comments which help inform their work and the development of the strategy, but Poland as a whole still views disability through a medical model lens which complicates the matter. If the Polish government ignores most of the DI recommendations they will stand their ground and try to change the government’s mind.

He also says in response to further questions that the strategy came centrally as an idea from government and therefore is somewhat incoherent at times and that people in positions of authority have lost their jobs over not being able to accept that DI was going to come to Poland in some form or another through the work of this working group.

Additionally, the working group has developed milestones which are to be met by the DI strategy; when a milestone is met another piece of the strategy is completed. President of Poland and the advisor to the President with regards to the rights of persons with disabilities are eager to set the strategy before the Polish parliament.

There are still over 300 people living in large scale institutions across Poland, with smaller institutions ‘rising like a mushroom after the rain in Poland.’

Andreja Rafaelic, member of the team taking forward the closure of Dom na Krasu and Crna institutions (Slovenia)

Has been a disability activist his entire adult life and is working to try and promote the cause of DI in Slovenia.  It is a constant struggle as there is no DI strategy currently and it is hard work to convince the government not to abuse EU funds and put them towards maintaining the practice of institutionalisation. They aim to get 60 people settled in the community and DI’d by the end of the year.

Zana Avbersek, manager at Crna institution (Slovenia)

Is the leader of an institution in the process of closure in Slovenia, which aims to DI PWD’s; however not fully into the community, like is expected, but rather into ‘dislocated units’ where several PWD live together (NB: smaller scale institutionalisation). Zana runs a care centre where around 300 PWD go to work; 75 of these are ‘external’, meaning they leave the centre at the end of the day to go home to their families. These employees are not paid an actual proper living wage like non-disabled employees but rather a monthly token wage. Her centre is currently prioritising personal /individual planning for users in relation to DI, and not pursuing an overall DI strategy. These personal/individual plans are being worked on by working groups. Furthermore, Zana says PWD are consulted in the DI process, and are part of these working groups, but as mentioned above little is said of employment for PWD once they are DI’d except for workshops, where they are not paid a standard wage.

Urska Sorta & Anze Trcek, Dom na Krasu institution staff members (Slovenia, translated to English by Anze Trcek)

They continue on Zana’s talk about ‘dislocated units’ and how they have piloted 52 PWD living in a town away from a large institution in some of these units. They have decided that these units are the best practice to go by for now, as they believe this is the best outcome they can achieve. They tried to introduce a limited scheme into their institution which would enable some inmates to go out with the aid of staff, but there wasn’t enough staff to make the scheme viable.

Jan Pfeiffer, coordinator of the DI reform in psychiatry (Czech Republic)

There are 18 psychiatric hospitals with over, 8,000 beds allocated to PWD. Due to reforms, there has been a co-ordination body established over 14 different counties to see how best to close these hospitals. They have mobile teams throughout the country, 95 in total, 30 of these are at greater level of advancement than the others. These teams find jobs for those who were living in these hospitals, and also try to help them get into the education system, while also participating in crisis interventions. Housing remains a big problem, with limited social housing being available, but more positively, over one thousand people have been DI’d and moved to live in the mainstream community.

After being questioned by Ines relating to the problem of social housing and the potential for personal budgeting, Jan, says that those with high level disabilities can apply for support such as PA’s, though they do not get 24/7 support. Regarding housing, some people who have been DI’d are able to find rental housing on the open market, but others can’t afford it due to rents ranging from upward of, 1,000 euro p/m. To get around this, sometimes organisations take charge of the rental contract with the landlord/housing agency and pay the rent for the tenant. This is not an ideal solution, but it is a possible solution around the problem of affordability. Social housing is also a possibility, but the amount of social housing being built is relatively low, though the Ministry of Social Welfare has it as a priority to improve the number of social housing occupancies.

Vasilis Kalopisis, coordinator of the DI reform project run by EASPD & Kamil Goungor, representative of Greece’s Independent Living NGO i-living (Greece)

Vasilis works on the DI project in Greece which is carried out by the European Association of Service Providers for Persons with Disabilities (EASPPD). Their project on DI runs from June 2019 to July 2021. The project consists of 30 deliverables and pieces of work which are all separate but interconnected. The DI strategy (DIS) is finished, and the project is now working on an action plan to accompany the DIS. This action plan will set goals to ensure that the vision and the goals set out by the DIS are met. They are developing a means assessment to support transitioning to a community setting, a communications strategy, a monitoring strategy, etc.

Kamil explains that i-Living took part in consultations and meetings with the goal of implementing the UNCRPD, General Comment No. 5 on the right to independent living, in an attempt to influence the DI strategy and its progress. There is also a PA scheme being developed in Greece for the first time, as well as support for employment for autistic people being piloted as a programme.  When the programme ends in July of this year, they intend to keep people engaged by insisting on legislative reforms to Greek law to ensure that DI continues as a process of the Greek government. They are also developing a monitoring framework which will include stakeholders such as NGO’s, DPO’s, etc. in order to continue commenting on and engaging with the process.

The DI process is not always in line with the UNCRPD (article 19) or General Comment No. 5 and this can lead to conflict, but the convention and GCs are accepted at a European level.

Frances Brown & John Dalrymple, Radical Visions (Scotland – UK)

Are involved in a group called ‘Radical Visions’ which helped the DI process in Scotland closing many hospitals that existed in the 1990’s. These hospitals no longer exist, but Radical Visions are uncertain in some regards how to proceed next and stress the importance of compromising in order to achieving objectives. They say that when moving people out of hospitals, they give them the choice where to live or people are returned to their families. They ran this DI approach on an individual (case by case) basis. Not applying the same solutions to all hospital inmates. Around 700 disabled people in Scotland have gone back to some form institutional setting, but many more are integrated into the community with the aid of support systems.

Miroslav Cangar, Ministry of Social Welfare (Slovakia)

Is presently working as the Director of Social Services at the Ministry for Social Affairs in Slovakia. Slovakia is currently running a national project of support for DI. They are using the European COVID recovery plan to gain financial support for NGO’s and help support PWD and their communities, and invest in community services. They are also preparing new legislation aimed at social care services, while pledging that the European investment funds won’t go towards institutionalisation. A big problem is the discourse around DI in Slovakia, with everyone expecting that PWD are moved into smaller institutions and taken out of larger ones. This leaves little room for discussions of community support, though there is some improvement around discussions of human rights.

There are two separate schemes, one a long term plan focused around social services, the other focused around mental health, which is developed by the Ministry of Health, which aims to build mental health support day centres, which won’t function as homes/restricted living institutes. The COVID pandemic made mental health worse with many in institutions having no visitors due to social distancing restrictions/lockdown laws. The proposed mental health mobile teams should work with the Ministry of Social Affairs in order to achieve the best outcomes.

The Slovak government has developed a DI strategy and since the 1990’s has had a programme of personal assistance for PWD. This programme is currently being reviewed to see how it can be improved, and integrated into the rest of the social care programme, with the state aiming to move towards a personal budgets model. They are looking at the best types of personal assistance services from different countries across Europe, in order to improve their own, as most PWD have access to PA services for only 80 hours a month.  Makes the final point of the discussion that the individual should not be forgotten in the DI process, and that the municipalities across Slovakia all have somewhat separate DI processes.