On 28 March, 2017, the European Commission, in cooperation with the Ministry of Labour and Social Policy of the former Yugoslav Republic of Macedonia (FYROM) organised a TAIEX Workshop on Deinstitutionalisation: Advancing the Process of Transition from Institutional to Community-based Care. The objective of the workshop was to raise awareness about the process of deinstitutionalisation and to discuss developments in this area in FYROM, with the aim of generating a strong Government commitment to move forward the development of community-based alternatives to institutional care.
ENIL’s role in the workshop was to present the key principles in moving from institutional care to living in the community, and to dispel some of the myths around independent living and deinstitutionalisation. Speakers from Bulgaria, Croatia and Estonia shared some of the lessons learnt from their countries, and opportunities provided by the EU funding.
In the opening presentations, the representatives of the European Commission and the EU delegation in Skopje both highlighted the importance of developing quality family-based and community-based services for children, disabled people and older people. They stressed that EU funding (the Instrument for Pre-Accession Assistance – IPA) cannot be used for any other purpose than to develop services in the community, and the importance of drafting a new De-institutionalisation Strategy, as the current one expires in 2018. Importantly, the EU officials called for the closure of Demir Kapija Special Institution – a large institution for people with mental disabilities, recently criticised for its conditions and the inter-resident violence.
The question and answer session, moderated by the representative of DG Employment, provided an opportunity for both the Government (represented by the Deputy Head of the Social Protection Department at the Ministry of Labour and Social Policy) and NGO representatives (Poraka Negotino, the National Disability Council, IPA Project on Social Inclusion and SOS Children’s Villages) to voice their views on the main obstacles to deinstitutionalisation, the next steps and the role of the NGOs in the process.
The Ministry official acknowledged that, while there are fewer children in institutions (thanks to a foster care system that has been in existence since the 1960s), there is not much support in the community for other groups. She highlighted the lack of social cohesion and the poor participation of municipalities, despite a number of projects aiming to improve social inclusion.
As the main obstacles to deinstitutionalisation, NGO representatives highlighted the following:
- The lack of leadership in the Government to take forward the process of deinstitutionalisation;
- Insufficient financial allocations by the Government to support community-based services; for example, the Poraka representative noted that, while the Ministry funded some of the community-based services provided by them, this funding decreased in 2012, which had a direct impact on service users; they very much rely on funding provided by the Open Society Foundations to continue moving people from Demir Kapija into the community;
- Great resistance by the staff of Demir Kapija to deinstitutionalisation – for fear of losing jobs, among other;
- The prevailing medical model of disability, resulting in disabled people being seen only through their diagnosis;
- The need to provide better support to families – while foster families require additional support as well, there is a tendency for biological families to receive even less support;
- The lack of awareness among the general population about the rights of disabled people, and other groups.
With regard to the next steps, some of the following suggestions were put forward:
- Shared responsibility for deinstitutionalisation among the different Government departments (not just the Ministry of Social Policy);
- Quality standards, which would allow for the monitoring and evaluation of services;
- Decentralisation of funding; and more generally, the need to re-examine how services are funded;
- Services to prevent institutionalisation, for example through better advice and support to families;
- Funding and capacity building for NGOs;
- No more admissions into institutions;
- A comprehensive deinstitutionalisation strategy/action plan, with responsibilities, financing and timing – adopted by the Government;
- Education of social workers, health professionals and teachers on how to support children and disabled people, in line with the social model of disability and human rights standards;
- Putting in place non-discrimination legislation;
- Better networking and coordination among NGOs.
The TAIEX workshop on deinstitutionalisation was a welcome step in encouraging the process of deinstitutionalisation in this Western Balkans country. The drafting of the new deinstitutionalisation strategy – to be supported by the EU delegation in Skopje – and some of the other initiatives on supported employment and personal assistance provide an opportunity to create genuine community-based alternatives for disabled people and other groups. The strong message on no further investments into institutional care (for refurbishment and building) and the calls for the closure of Demir Kapija are also crucial, as too many opportunities to move forward with deinstitutionalisation have already been missed.
While, compared to some other countries, FYROM does not have a large number of people in institutional care (currently around 500), according to the Helsinki Committee, 375 Demir Kapija residents have died in the last 17 years. This trend is bound to continue, unless more people are able to move to the community and receive adequate support.