Delayed deinstitutionalisation in post-socialism

ABSTRACT

A qualitative, mixed and partly covert research of the locally specific characteristics of deinstitutionalisation was carried out in Slovenia in 2015. The research showed that more than 20,000 adults with different disabilities still live in different long stay institutions and that there are not sufficient NGOs that would support community-based living. Deinstitutionalisation is viewed as a change for the worse and is therefore reduced to minor transformations of the existent long stay institutions, described in the study. The state worries that deinstitutionalisation would demand a more costly welfare system and the relatives of disabled people worry that deinstitutionalisation will increase privatisation of welfare and that the burden of care will fall on them, as is the case in many other post-socialist countries. Within the locally specific context of post-socialism, deinstitutionalisation needs to be a top-down social policy decision that will influence professional education in different areas of care work and will provide a re-training of the existing staff. The experiences of people who survived long stay institutions or still live in them need to become public knowledge, as learning from the lived experience might make the process of deinstitutionalisation more vibrant, efficient and useful for everyone. The study captured some of their experiences.

POVZETEK

Kvalitativna raziskava o lokalnih specifikah deinstitucionalizacije iz leta 2015, v kateri je bila uporabljena mešana metodologija in deloma prikrito raziskovanje, pokaže, da več kot 20.000 odraslih z različnimi ovirami še vedno živi v različnih zavodih, in da skromno število nevladnih organizacij na tem področju, ne more biti zadostna podpora ljudem, ki naj bi živeli v skupnosti. Ker deinstitucionalizacija praviloma velja za nekaj slabega, so se do danes zavodi le deloma preoblikovali, te spremembe pa opisujemo v članku. Vladne službe na področju ljudi z ovirami skrbi, da bo deinstitucionalizacija podražila sistem socialnega varstva, svojci oviranih pa se bojijo, da bo v prihodnje prišlo do vse večje privatizacije socialnih servisov in da bo breme skrbi preloženo na njih same, kar ni redka praksa nekaterih post socialističnih držav. Deinstitucionalizacija mora v svojih lokalnih posebnostih biti proces »od-zgoraj-navzdol«, v katerem načrtovalci socialne politike skupaj z drugimi akterji prenovijo tudi strokovno izobraževanje osebja, ki že dela z ljudmi ali v stroko šele prihaja. Študija predstavi tudi nekaj izkušenj odraslih, ki so preživeli dolgotrajno bivanje v zavodih ali v njih še živijo. Njihove osebne zgodbe morajo postati del javnega znanja, ki naj spodbudi proces deinstitucionalizacije in zagotovi učinkovite spremembe.

KEYWORDS:

• social work
• deinstitutionalisation
• long stay institutions
• postsocialism
• covert research
• experiences of survivors

KLJUČNE BESEDE:

• socialno delo
• deinstituticionalizacija
• zavodske ustanove
• postsocializem
• prikrito raziskovanje
• izkušnje preživelih

Disclosure statement

No potential conflict of interest was reported by the author.

Notes on contributor

Dr Darja Zaviršek is sociologist and professor of social work at the University of Ljubljana, Faculty of Social Work where she is the chair of the Department of Social Justice and Inclusion. She holds the title of the honourable professor at the Alice Salomon University of Applied Sciences Berlin where she teaches at the master programme Social Work as a Human Rights Profession. She is the founder and the president of the Eastern European Sub-Regional Association of the Schools of Social Work at the IASSW and the member of the European Network of Disability Experts.

Notes

1. Slovenia was part of Yugoslavia from 1945 until 1991.

2. Slovenia is the member of the EU since 2004.

3. In Slovenia research done about people do not need ethical approval, but researchers are obliged to follow the ethical code of the University of Ljubljana.

4. The research deliberately left aside the situation of children below 18 years of age due to the specific schooling system and other legal issues.

5. The lack of a systematic collection of basic statistical data on disabled people in the country is since 2008 annually reported to the European Commission in the framework of the Academic Network of Disability Experts, ANED research reports. http://www.humanconsultancy.com/project?pid=7 (1.7. 2016).

6. The funding for the governmental long stay institutions comes from three major sources: from the person and his/her relatives (pension, relatives’ contribution); the local municipality and the governmental funds if the persons’ income does not cover the monthly expenditure of the placement. The monthly price for the institutional placement for adult person is between €1000 and €1500, depending from the type of the institution and the medical care needs of the person.

7. The quotes were translated by the researcher.

8. The only boarding school for visually impaired children and young people in the country recently renamed itself as the Centre for the blind, partially sighted and elderly.

9. The jargon of the personnel and users refers to this practice as the ‘vacation for the residents’, as the residents are free from working in the sheltered workshops during this time.

10. Since 2014 the threshold of poverty for a single person household is 596€net/month, which shows that the institutional care is rather expensive. There are 14.5% of population (about 290,000 persons) who live under the threshold of poverty line, but there are no data on how many of them are disabled persons.

11. The majority of disabled residents have only the right to keep €50 pocket money/month, after they pay the monthly bill for the institution. When the pension is less than the payment for the institution, the difference is covered by the budget of the local municipality where the institution is located or where the person has the permanent residency.

12. One of the key tasks of social workers until present times is to organise the institutionalisation of disabled children and adults.

13. The country has 212 local municipalities and the same number of majors whose political power depend also from large long stay institutions that are placed within the local municipality.