Introduction
Disabled people’s right to Independent Living, which is set forth in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and is promoted by the European Network on Independent Living (ENIL), has proven to be difficult to achieve in post-socialist countries, including the countries of the former Yugoslavia, which are the focus of this article. This difficulty must be considered in its economic, social, and political context. Some scholars have defined the post-socialist countries of former Yugoslavia as countries of the European semi-periphery, since weak economy, growing unemployment, corruption, political crises, low wages and even lower pensions, and housing crises cause economic and political dependencies on the core countries (meaning the Western counties with major economic and political power) (Blagojević, 2019; Cerami & Vanhuysse, 2009; Bašić, 2014). Economic vulnerability has implications for the disability rights field, particularly for deinstitutionalisation. Many people facing resource scarcity are moved into large semi-closed institutions as a ‘last resort’ and the only option for housing and basic daily and long-term support. The large facilities have also been integral parts of survival economies for the local population, staff, and outsourced local food suppliers and tradespeople (e.g. plumbers, electricians) (Zaviršek, 2018).
From a societal perspective, it can be observed that the attitudes of mainstream society and professionals towards disability in general, and individuals with impairments who need continuous support in particular, are determined by familialism and paternalism (Zaviršek, 2018). Familialism and paternalism intertwine and influence current attitudes of the general population, as well as the enforcement of the law.
Familialism can be defined in various respects. In this context we define the juxtaposition of familialism and paternalism in two ways. First, familialism is a general belief that people with disabilities lack capacity and need for self-determination and that family members are the best ‘caregivers’ for them and can make decisions in their place. Second, familialism is based on a political (and specifically neoliberal) expectation that the ‘burden’ of ‘long-term care’*1 should be assumed by families and individuals in order to reduce government funding in the social and long-term care sector. The discourse of familialism overlooks the fact that not everyone can or wants to be supported by family members and that, especially in Serbia, there is a shortage of female caregivers in some communities due to the female care migration to Western countries (Višić, 2022).
Paternalism in the article refers to policies and practices of authority figures that limit the right of self-determination of people with disabilities and increase further their dependency. Under paternalism, people with disabilities become subordinate to family members, health, and social service professionals. The effect of familialism and paternalism results in people being trapped in relationships of dependency and in a discourse of pity and lack of autonomy, for example the prevailing view that government or private residential institutions with more than 90 people living in one place are the best substitute for ‘long-term care’ within the family.
As a result of the persistence of familialism and paternalism in this region, the legislative changes made in some Central and Eastern European countries (CEE), all of which have ratified the UN CRPD, mainly aim to incorporate the work of relatives in the home care of people with long-term disabilities and placing people who previously lived in large welfare institutions into smaller facilities (either in the residential units for at least 25 persons or in group homes). None of these changes enable a radical shift toward independent living, and conversely, independent living as a philosophy and way of life is not yet a real alternative to family-based and paternalistic welfare provision in CEE. By extension, the social model of disability, which promotes dignity, respect, and self-determination to improve the lives of people with disabilities, remains an ‘alternative’ and a ‘radical way of thinking’ rather than being mainstream.
Methodological Approach: Comparative Analysis
In order to highlight the processes of delayed deinstitutionalisation and impeded progress towards independent living, we examined two post-socialist countries – Slovenia with 2.1 million and Serbia with 6.9 million inhabitants – in detail using a comparative approach. The methodology includes the analysis of journalists’ notes, reports by different long-stay residential institutions and non-governmental disability-rights organisations in both countries written in local languages and published online, academic literature, as well as fieldwork research (in Serbia in April 2022, and in Slovenia, ongoing research). We also refer to knowledge gained from preparatory meetings in Serbia with 14 local experts in the area of social welfare, academics in the field of female labour migration, and women’s non-governmental organisations. These meetings were undertaken to help shape a doctoral project researching the social consequences of care migration to Western Europe for local communities in Serbia. Ongoing field research in Slovenia includes active membership and advocacy in the disability-activist Organisation for the Theory and Culture of Handicap (YHD), as well as ongoing research on disability policy as part of the European Disability Experts research group funded by the European Commission.
The comparative analysis we have conducted rests upon qualitative analysis of relevant policies, programmes, and practices in the two countries.
In this article, we use the terminology ‘people first’ and ‘identity first’ interchangeably. We believe that both terms are important. ‘People with disabilities’ emphasises individual humanity and uniqueness over impairment. The term ‘disabled people’ emphasises ongoing disablement by a normative environment and society that impede people with impairments and makes them ‘disabled’. For some people, ‘disabled’ is a statement, an identity, and an attempt to turn the negative associations of ‘disability’ into a positive identity.
From a Historical Perspective: Establishing a General Framework of Similarities and Differences
As previously stated, Slovenia and Serbia were formerly part of one country, Yugoslavia (1945–1991). They had a fairly similar history of physical segregation of people with disabilities into state institutions. Those institutionalised were defined as ‘unable to work’ and ‘unable to be retrained’. In both countries, the legal system treated people with disabilities as ‘invalids’ unable to engage in paid work or to live independently (Zaviršek, 2000).
The communist leadership of Yugoslavia considered institutionalisation of people with disabilities as a ‘humanistic’ treatment, based on the 20th-century idea that humanism is a non-religious way to promote human dignity and human development in a secular society (Marshal Tito was fond of saying that communists are not Samaritans, but humanists) (Zaviršek, 2018). The ‘incapable of work’ and the ‘incurable’, especially people with intellectual disabilities and mental health diagnosis, were housed in large abandoned or confiscated castles and buildings of the pre-war aristocracy. The overall structure of these institutions (most of which were opened from 1948 to the mid-1970s) was abusive. People with various impairments and needs lived spatially isolated from local communities, with strict institutional schedules, over-medicalised but without adequate medical care, punished, stigmatised, and lonely (Zaviršek, 2018).
After 1991, Serbia was affected by the ultra-nationalist Milošević regime and the Yugoslavian war, while Slovenia strove to move as close as possible to the European Union (EU), becoming the first of the former Yugoslav countries to join in 2004.
The consequence of these two different developments was that Serbia struggled with nationalism and the impoverishment of the country, which increased the economic insecurity of people with disabilities, while Slovenia was more economically successful and disability activists therefore had more opportunity to demand their rights.
The establishment of grassroots non-governmental organisations (NGOs) and increased cooperation with international disability initiatives in both countries, as well as the adoption of the UN CRPD contributed to some moves being made towards a rights-based approach to disability. These were not, however, sufficient to achieve real deinstitutionalisation and independent living. While Western countries closed large institutions for persons with disabilities in recent decades, the countries of the former Yugoslavia opened new, larger institutions for children, adults, and older persons with disabilities and long-term mental health problems. This time-lag and the culture of paternalism are reflected today in the delayed deinstitutionalisation processes in several post-socialist countries (Zaviršek, 2017a).
A comparative look at the two countries focusing on institutionalisation, reinstitutionalisation, deinstitutionalisation, and independent living reveals some similarities and differences. In both countries, there are two parallel processes. One is a fragmented and slow process of moving people with disabilities into community-based services, and the other is the introduction of some progressive legislation in both countries (for example, the introduction of a quota system in employment, personal assistance, the struggle for a parent-carer system in Serbia, etc.). Parents of children with disabilities in Serbia have been advocating for a law on parent-carers for the past decade and collected over 100,000 signatures. Such a law, they claim, would give a parent the right to stay home with the disabled child with financial compensation for the care work and lost income. This would also give children with disabilities and children without disabilities the same rights because the former could stay home. A similar legislation was passed in Bosnia and Herzegovina in 2021 (N.N., 2016, 2022).
Data on institutionalised persons with disabilities in Serbia are sparse and inconsistent, and the number of people living in institutions remains unclear. Residential and nursing care facilities usually have at least 100 places, but typically between 200 and 500 persons with disabilities live in one building (Stoeckel et al., 2022: 9). A 2014 report explicitly addressing the state of deinstitutionalisation in Serbia lists 17 public residential facilities for adults diagnosed with a mental disability and people with physical disabilities, housing 5,574 people (which means an average of 327 people per facility). Between 70 and 80% of the residents are accommodated outside their community (Pejaković & Zajić, 2016: 23), which means that they live physically separated in areas that are far from their local community of origin. In general, facilities in Serbia are mostly located in remote places in less populated areas. In the area of ‘long-term care’ for older people, there were a total of 40 state-run residential homes, with 8,053 residents in 2013 – an average of 201 persons per facility (Pejaković & Zajić, 2016: 23). The public sector in Serbia has not undergone important changes to date (Pejin Stokic & Baje, 2021: 7). In general, living conditions in residential homes are very worrying and the quality of care in them has been repeatedly criticised by both national and international NGOs (Stoeckel et al., 2022: 2).
In Slovenia, more than 23,000 people live in long-term institutions such as boarding schools, sheltered workshops (some are residential homes, which means that people live and work there; others are pure workplaces, where residents work from 8:00 a.m. to 3:00 p.m.), social institutions for children, young people, and adults with disabilities, and nursing homes for older people – in a total of about 167 institutions (Zaviršek et al., 2017a). This includes about 5,000 people with disabilities, aged 18 to 64, who live in large long-term institutions with more than 100 people in one place. In nursing homes for older people there are about 1,000 people with disabilities younger than 65 who live there because there are no other long-term support services and housing options. These remote places are still the sites of employment for local people in the absence of other employment opportunities in rural areas (Zaviršek, 2017a, 2017b; Zaviršek & Pečarič, 2019).
Another similarity between Serbia and Slovenia is that, even when both countries received financial support from the EU and international donors, the money was often spent on building new facilities or renovating and expanding old ones (Zaviršek, 2017a). In Serbia, the process of housing people in community services ended when the flow of money from the EU stopped (Mladenov & Petri, 2020; Rafaelič & Flaker, 2022). In Slovenia, the construction of new institutions and the renovation of old ones provided investment and prestige opportunities for local elites. Every time a new facility was built or renovated, the cameras of national television showed the proud-looking mayor and his team in front of a newly built residential home, a rebuilt sheltered workshop, or a nursing home. Within such a mentality, it is assumed that people with disabilities should either be supported by family members at home or have to be placed in long-term institutions as in the pre-1991 era. The paternalistic welfare system, which is not interested in the agency and self-determination of people with disabilities, and economic scarcity, went hand in hand and created the current situation. Individuals with disabilities can either stay at home or move into a congregational type of long-stay institutions – these are the ‘choices’ available to them.
As will be shown, neither Serbia nor Slovenia have invested enough in public health and social services, and it is very likely that social spending will explode in both countries due to the ageing of the population. In 2021, the old-age dependency ratio was 32.4% in Serbia and 32.1% in Slovenia, which is comparable to the countries that rank first in the old-age dependency ratio (the EU-27 average is 32.5) (Eurostat, 2022). This will lead to an increase in social spending in the future, especially for pensions and ‘long-term care’ for older people and will likely have an impact on social spending for other areas, including independent living for people with disabilities.
In the context of everything so far mentioned, deinstitutionalisation and independent living, as defined today by the European Network for Independent Living (2022), would be a radical departure from the abusive treatment of people with disabilities herein described. Both processes require treating people with dignity and respect and promoting the value of self-determination. Independent living as a paradigm and practice requires a multi-professional approach to disability and an end to the dominance of the medical perspective, which has not been achieved in Eastern Europe. It cannot be achieved if people with disabilities are not treated as equal partners when it comes to making decisions about their daily lives. People need to learn about different options and must receive individualised support to exercise their rights (e.g. the right to employment, to be parents or active citizens). Some professionals and parents, to justify their defensive attitude towards deinstitutionalisation, claim that, when asked where they would like to live, disabled people answer that they actually like to live in an institution. Thus, it is not surprising that many people continue to live in large institutions and in smaller units that are operated as micro-institutions. In contrast, independent living as a paradigm and practice calls for people to be aware of different housing options, forms of support, and to be empowered to raise their aspirations and reduce their anxiety and dependency.
From Institutionalisation to Deinstitutionalisation to Reinstitutionalisation
The plan for deinstitutionalisation in Serbia dates back to 2000, when a reform of the social welfare system in the country was initiated. Later, with Serbia’s ratification of the UN CRPD in 2009, deinstitutionalisation became one of the main objectives of reform (Stoeckel et al., 2022: 2). In April 2020, the Serbian government published a draft of the long-awaited Strategy of Deinstitutionalisation and Development of Social Services in the Community 2021–2026, and a draft Law on Protection of the Rights of Residents of Temporary Residential Services in Social Care Homes (MDRI-S, 2021). There was great disappointment and outcry among organisations working in this field – 17 international and Serbian organisations expressed strong criticism of the published documents in a position paper, stating that ‘both documents significantly undermine the proclaimed goal of ensuring full social inclusion of persons currently detained in residential institutions [and even] rather justify continued segregation of the residents’ (MDRI-S, 2021). Furthermore, the position paper claimed that the ‘real goal of this Draft Law … is to legitimize practices that violate the human rights of persons in residential accommodation’ (MDRI-S, 2021).
Twenty years after it started, the outcome of the deinstitutionalisation process is deeply disturbing. In summary, the Serbian government’s policies aim to change institutions rather than abolish them and only reduce their numbers (MDRI-S, 2021). The legal commitments to deinstitutionalisation and the promise to uphold the UN CRPD suggest that the government is paying mere lip service to the process, as part of EU accession negotiations. In 2020, a European Commission report on Serbia’s accession negotiations laconically stated: ‘No progress was made in local-level social care services or in the deinstitutionalisation process’ (European Commission, 2020: 96).
In Slovenia, the idea of deinstitutionalisation has a long history – some group homes have been opened since the 1990s, disability rights NGOs have been established, and the government enabled existing large institutions to open smaller residential units. Since 2002, government documents have attempted to subsume the discourse of deinstitutionalisation under the term ‘long-term care’ (Zaviršek, 2018). As recently as 2018, the Ministry of Labour, Family, Social Affairs and Equal Opportunities established the Directorate for Older People and Deinstitutionalisation and launched two pilot projects in 2019 (one in an institution for children and youth and one in an institution for adults) to move 140 people into smaller housing units (bivalne enote) and into group homes (four to six people) in the community. In addition, some public tenders for the development of group homes, mobile units, and day centres were held across the country. To implement the National Strategy for Deinstitutionalisation (which is planned to be written in 2023) and the Action Programme for Persons with Disabilities 2022–2030, the same Ministry established a Project Unit for the Implementation of Deinstitutionalisation to lead the process of deinstitutionalisation in Slovenia. The plan to relocate 140 people from large facilities to the community by 2023 is delayed. One facility had relocated 16 people by the end of 2022, and there is a lot of ‘paperwork’ going on. Some laws and regulations still need to be harmonised due to fragmented and bureaucratised disability policies. Weak inter-professional collaboration, which is an important component of deinstitutionalisation, as well as the increase in housing prices and land that the ministry wants to buy for building community-based housing solutions, make large-scale deinstitutionalisation a challenge.
The process of deinstitutionalisation, which was not really intended by the policy-makers in Slovenia but rather carried out due to the flow of EU funds, shows a great inconsistency in its planning. For example, the same Ministry that established the Directorate for Older People and Deinstitutionalisation promised to allocate €30 million for new large nursing homes for older people in 2022 and 2023 (G.C., 2021; New Slovenia, 2021). The Slovenian Long-Term-Care Act of 2021 also continues the institutionalisation of people over 65, including people with disabilities. It has been criticised for its medicalised approach and lack of consideration of the social needs of individuals. The National Council of Disability Organisations (2020) stressed that the law does not universalise rights and excludes some people with disabilities from the right to choose between different types of ‘long-term care’, e.g. deafblind people who are considered as being ineligible for support at home and only in an institution. The law says little about the provision of community-based services or the recruitment of new professionals for these services. More so, the people who choose to live at home can only be supported by their relatives, presumably women. The facilities envisaged in the law will not strengthen the right to privacy of people with disabilities, as only 25% of all rooms in congregate care settings are planned as single rooms. Instead of a conceptual shift towards a right to free choice of housing and support, there are two parallel and conflicting developments – one that promotes community-based living and another that retains existing welfare institutions and minimises costs for public social assistance.
There is some evidence that reinstitutionalisation is under way in both countries. In Slovenia, congregational ‘long-term-care’ institutions for people with disabilities have been extended, establishing several housing units for 25 to 40 residents over the last two decades, usually close to the main facility buildings. Most of them replicate the routines of traditional institutional living – 24-hour supervision of residents by staff, food that often comes from the kitchen of the main facility building, and almost no opportunities for individuals to make their own decisions, not to mention self-determined living (Zaviršek, 2017a). The institutional culture and the institutionalised atmosphere remain. In Serbia, some people with intellectual disabilities and long-term mental health problems were rehoused in institutions due to budget cuts, termination of projects, and after the EU funds were spent (Stoeckel et al., 2022: 3).
In contrast to the proclaimed deinstitutionalisation in both countries, residential care facilities in the private sector for older people with disabilities are on the rise. Especially in Serbia, private service providers for long-term support for older people have mushroomed since the introduction of measures for welfare pluralism in 2011. A report published by the European Commission states that the number of providers of residential care for older people in Serbia more than tripled from 2015 to 2018, while the number of public providers remained the same (Pejin Stokić & Baje, 2021: 7). Moreover, despite the fact that private ‘long-term care’ homes accommodate far fewer residents per facility – in 2018, 48% of private facilities had capacity for 30 or fewer residents and only 18% had capacity for 50 or more residents – the living conditions in nursing homes in Serbia are poor due to the providers’ profit orientation (Fischbach, personal notes from fieldwork, 2022). Pejin Stokić and Baje (2021: 9) even report ‘illegal residential care facilities’ in several municipalities, seven of which were closed in 2018. They refer to facilities that do not have a state licence that ensures standards for the provision of ‘long-term care’, and to informal private providers that are less expensive than official residential facilities.
In a report commissioned by the Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ), which dealt with the Draft Law Amending the Social Welfare Law 2018, Jovanović (2018) criticised the amendment. He said that, although the amendment sets a cap on the number of people in certain ‘long-term care’ facilities, there could be more than one facility in an institution. He sees this as a gateway for reinstitutionalisation:
This provision, contrary to the deinstitutionalisation intention and all the proclaimed values in social welfare advancement to date actually opens door for re-institutionalisation (new institutionalisation) and is very dangerous and detrimental, with the huge potential for undermining the system of community-based services and for rendering senseless the concept of human rights in the social welfare in Serbia, especially when it comes to residential care of children with developmental disabilities. (Jovanović, 2018: 60)
Stoeckel et al. (2022) also point out that, since 2015, only a few individual projects have been realised in which people with disabilities and mental health problems have moved into supported housing and note that not much has changed for the people concerned, as most of the ‘mini-establishments’ were located close to the big residential facilities and continued to be operated by the same public provider.
Community-Based Services in Serbia and Personal Assistance in Slovenia
One of the common features of Serbia and Slovenia is the lack of community-based services. In Slovenia, community-based services still receive less funding than institutional long-term care (Report on the Implementation of the Action Programme for Persons with Disabilities 2014-2021 for 2020, 2021). A report on the scope of social care services in Serbia (Matković & Stranjaković, 2020: 77) laments in particular the underdeveloped personal assistance services for people with disabilities – they were available in only 17 municipalities (lokalna samouprava) out of a total of 145 municipalities, with only 223 people using personal assistance across Serbia. Sheltered housing for persons with disabilities was available in only six municipalities, accommodating 107 persons with long-term needs, and the number of service users actually decreased between 2015 and 2020 (Matković & Stranjaković, 2020: 21). Regarding the lack of community-based services, the aforementioned authors claim that the users of these supports for independent living were predominantly men from urban areas, which evidences a striking gender inequality (Matković & Stranjaković, 2020: 21).
Although in recent years in the field of support services for older people in Serbia ‘day care’ services have been diversified (e.g., gerontodomaćice, home-based support for older people), their number is small and does not cover the needs of older people living at home (Sauer & Perišić 2014: 210), not to mention that these services do not even comply with the independent living approach. Especially in rural areas and even more so in the structurally weak eastern and southern regions of Serbia, local communities are disintegrating – populations are older, they are isolated and have hardly any social networks, let alone social protection and access to services (Sauer & Perišić 2014: 210). The uneven distribution of basic social services for older people and residential long-term facilities is striking; for example, 91.1% of all residential facilities are located in the northern part of Serbia (52.6% in the city of Belgrade and 28.5% in Vojvodina Province) (Pejin Stokic & Baje 2021: 7).
If the coverage is so low even for basic social services, it is not surprising that more advanced community-based services that would support self-determined and independent living have not been established. This is also one of the reasons for the ‘revolving door’ phenomenon and reinstitutionalisation, especially among people with long-term mental health problems. In order to achieve deinstitutionalisation in Serbia and prevent the attitude of NIMBY (a ‘not-in-my-backyard’ attitude of people living in the areas where community-based housing is to be established), which is also a problem in Slovenia, it is important to develop services that are accessible in local communities and to take into account the diverse needs of people with different impairments (cf. Ben-Moshe, 2020). Jovanović (2018: 10) asserts that, in Serbia, the success of deinstitutionalisation highly depends ‘on the development of alternative social welfare services and strengthening of stakeholders which can provide them’.
While personal assistance exists in Serbia on a small scale and is not really based on the principles of independent living, Slovenia is the only country among the countries of former Yugoslavia where a Personal Assistance Act has been adopted and implemented since 2019. The Act was the result of more than 20 years of political struggle by the Slovenian disability-activist Organisation for the Theory and Culture of Handicap (YHD), which has been advocating for independent living and self-determination since the 1990s. YHD has enabled hundreds of people to avoid institutionalisation (YHD, 2004).
The Personal Assistance Act of 2019 regulates personal assistance for people between the ages of 18 and 64 who require at least 30 hours of personal assistance per week. The law, which is not universal, results in children and older people with long-term needs for continuous support having to be placed in institutions (Ministry of Labour, 2020). The law and the attendant regulations did not envisage that family members and relatives of people with disabilities, mostly women who are often affected by unemployment and poverty and who also provided unpaid care over a long period of time before the Act of 2019, would be the first to want to provide personal assistance to their disabled relatives. In a relatively short time, over 2,000 personal assistants were registered in 2019 and 1,114 people became recipients of personal assistance. The assistants were served by 105 personal assistance providers, of which 48 were non-governmental organisations and more than half (57 providers) were registered private companies. The latter were mostly ‘family businesses’, where parents opened a private business to employ family members as personal assistants. In some cases, a disabled person had three family members as assistants, and the same family members were also the personal assistance providers as well as the legal guardians. This conflict of roles and responsibilities created a new type of family ‘institutionalisation’ and became a major concern of disability activists who called for legal changes (Pečarič, 2019; G.K., 2020, Hočevar, 2020).
Some NGOs reported serious abuses, such as providers lacking experience in the field and lacking professional qualifications. Sometimes relatives opened a private business just to be employed as personal assistants, and in at least one case the ‘disabled service user’ did not exist at all (Zaviršek & Pečarič, 2019). Some people with disabilities experienced violence at the hands of relatives who became personal assistants. Despite various criticisms, the situation deteriorated and the number of new personal assistance providers steadily increased.
This ‘domestication’ of the law led to new dependencies and forms of coercive care for some people. The paternalistic attitude, dating back to the time when the family was the only ‘security haven’ and the state was considered dangerous and unreliable, continued. In the neoliberal era of post-socialism, the state uses family members, mostly women, for paid care work in families to reduce welfare costs and unemployment.
In 2020, the disability-activist organisation YHD, together with several other disability organisations that also became personal assistance providers, wrote a manifesto pointing out that the implementation of the law was not compatible with the philosophy of independent living and the UN CRPD (ZA-MISLI, 2020). The manifesto warned that the whole system of personal assistance was at risk of being abused and that it would not have a positive impact on individual decision-making and quality of life. Disability organisations warned that the system could become so costly and problematic that the government would eventually stop funding it. They called for several changes, including regular reassessment of personal assistance recipients, a reduction in the number of experts assessing personal assistance needs, and an increase in their qualifications. They stressed the need to change assessment tools, as different assessment commissions sometimes reached completely different conclusions, and called for urgent training of personal assistance coordinators working in local social work centres. They also called for personal assistance providers to meet certain formal professional requirements, as anyone who wanted to become a personal assistance provider was accepted by the Ministry. The manifesto stressed that the number of family members who wanted to become personal assistants for a disabled relative had to be limited to one family member.
It became clear that the implementation of the law on personal assistance is family-centred and not user-centred, a phenomenon observed in some other post-socialist countries (Mladenov, 2019), and that it does not promote the independence of all people with disabilities. On the contrary, some people continue to be supported by their relatives at home, and their segregation has increased under the term ‘personal assistance’. For example, some parents who have become personal assistants no longer allow their adult family members to visit sheltered workshops in order to receive a higher amount of money for personal assistance than if the relative uses other services for daily activities. In 2021, the Ministry finally agreed to limit the number of family members to two (instead of one as proposed by disability activists) and declared that a contractor cannot be a personal assistance provider.
Despite the difficult circumstances in which people with disabilities live in the post-socialist countries, they have stood up for their rights and self-determination in both Serbia and Slovenia. Two Centres for Independent Living, one in Belgrade and one in Ljubljana, were founded by disability activists in 1996 (Rajkov, 2003; YHD, 2022). Nowadays, however, the progressive ideas of independent living and disability rights in Slovenia are partly transformed into a replication of the old-fashioned, family-based, patronising welfare system, while in Serbia independent living remains at the level of singular ‘projects’.
In Serbia, the lack of community-based services that would support deinstitutionalisation can be partly explained in the context of the Serbian welfare state being a ‘transition loser’ (Perišić, 2016). After 1991, the welfare state was successively dismantled, and social policy systems and measures declined sharply with the emerging dominance of market economy. After the financial crisis in 2008, the government implemented austerity measures that severely affected the welfare system – while social spending still accounted for 17.6% of GDP in 2011, it fell to 15.9% by 2013 (Perišić, 2016: 658). One of the measures included a new ban on employment in the public sector in 2014, which still affects almost all health and social professions today (Perišić, 2016: 649). It is the main reason why since 2015 the number of employees in long-stay public institutions for older people decreased by 30% (Pejin Stokic & Baje, 2021: 9). The well-known Belgrade critical sociologist and feminist Marina Blagojević describes the post-socialist period as follows:
The society and economy are actually pushed aside in long term de-development, i.e. permanent social regression – representing a mean line of social and demographic development of semi-periphery. Its main features are: population decline, enormous social devastation and overall insecurity, collapse of economic activity and employment, decrease of consumption and lifestyle of pure survival for vast majority of citizens, shrinking of social protection and social instability, lack of solidarity and cohesion, general social chaos, engrossed violence (suicides and homicides), etc. (Blagojević-Hughson & Bobić, 2014: 514)
Blagojević chose the term ‘de-development’ to suggest that post-socialism is not characterised by ‘the absence or slow pace of development [but] a deep structural change that in economic terms is related to the depreciation of human, institutional and infrastructural capital’ (Blagojević, 2019: 1004). Against this background, it is not surprising that to date there has been no investment in alternative community-based services, and no evidence of investment in their future development. Much more likely is the continued pursuit of two coping strategies in Serbia, similarly to Slovenia – persistent reliance on the familialist model of care, and reinstitutionalisation.
While the Serbian welfare state has been described as a ‘transition loser’, Slovenia, in contrast, has been defined as a ‘success story’ among post-socialist transition countries. Nevertheless, here too, state funding for health and social services is below the EU-27 average (Skela Savič, 2021). Both the country on the ‘sunny side of the Alps’ (a famous slogan meant to boost tourism after 1991) and the ‘transition loser’ have not invested in the social and health sectors to strengthen the rights-based approach for people with disabilities.
Familialist Model of Support, Retraditionalisation, and their Gendered Implications
The familialist model of support, pointed out by Krakowiak (2020), sees the family as the first and by default the most important ‘caregiver’ for older people with impairments, people with disabilities, and people dying at home. That the Serbian welfare state relies heavily on this type of welfare model becomes clear when we look at the ‘long-term care’ for older people (aged 65 and over): 85% of older people in need of support are ‘cared’ by their relatives (Sauer & Perišić, 2014: 211). A survey on informal caregivers from 2012 concluded that around 97% of people in need of long-term support rely on family members, friends, and neighbours (Pejin Stokic & Baje, 2021: 9). This informal support in the private sphere has a major role in the Serbian welfare system and is primarily carried out by women, who perform unpaid work that has serious consequences for their working and living situation.
The actual implementation of the Personal Assistance Act of 2019 in Slovenia also shows the dominance of the familialist model. Personal assistance should enable service users to lead more active lifestyles, to fulfil their own wishes and needs, to become employers of those who support them, and to become more confident and independent. Instead, family-centred welfare has provided some economic resources for the whole family, but often keeps the ‘invisible other’ trapped in the family, as they used to be in institutions. One social worker expressed this very poignantly: ‘Personal assistance has become a substitute for everything that is missing in the welfare system in the country’ (public discussion, National Congress of Social Work, November 2022, Slovenia). The voices of most people with disabilities who have the right to personal assistance remain unheard (Zaviršek & Pečarič, 2019). Similar to Serbia, most family members who became personal assistants are women.
Moreover, there is some empirical evidence of refamiliarisation and retraditionalisation taking place in the Serbian society.*2 Retraditionalisation, a term that encompasses the rise of nationalism, religiosity, and pro-natalism, affects women’s care work in families with people with disabilities. Traditionalist discourses use growing unemployment to argue that women should indeed return to their primary caregiving roles in families and stay at home. Blagojević-Hughson & Bobić (2014) argue that ‘the long lasting devastation of the public sphere has resulted in reinforcement of a private sphere’, transforming the gender regime towards a further strengthening of the family (Blagojević-Hughson & Bobić, 2014: 516). Referring to the period after the dissolution of socialist Yugoslavia in terms of the prevailing gender regime, Blagojević (2019: 1009) explains: ‘Instead of the previous notion of the gradual, collaborative and spontaneous achievement of gender equality, a strong shift was made toward re-traditionalisation, re-patriarchalisation and re-familiarisation.’ This is also reflected in the new legislation that is expected to be passed and will transform women who are long-term and unpaid caregivers for children with severe disabilities into paid personal caregivers, the so-called parent-carer (roditelj-negovatelj) law. The family-centred ‘long-term care’ provides some remuneration for women who would otherwise continue to do unpaid work at home, but it also excludes them from the mainstream labour market and keeps them in the isolated sphere of family life.
In the case of Serbia, however, the familialist model of long-term support has come under pressure due to the female care migration to Western European countries (Višić, 2022). While the Serbian government seems to anticipate and rely upon the strengthening of familialism, it ignores the long-lasting and never-ending internal migration (from rural to urban areas), as well as the external migration to Western Europe. With the increasing informal labour migration of women to take on care work abroad, the reliance on family members and the informal network as caregivers is becoming fragile.
Obviously, the familialist model of long-term support based on the ‘tradition of a sense of moral duty or gratitude for help and love received before’ (Krakowiak, 2020: 3) and values such as intergenerational solidarity and reciprocity has its limitations in a country where a 2012 study found that only 26% of parents want their children to live in Serbia (Blagojević Hjuson, 2012: 255). The refamilialisation of recent decades on the one side and the women’s labour migration on the other side, which has become a necessity due to the underlying political-economic processes and often the only option rather than a choice, may make support by family members less reliable and less sustainable.
Looking from a gender perspective, two different processes can be observed in Slovenia and Serbia. First, while under socialism women were pushed into paid employment and public institutions were also created for this purpose (Zaviršek, 2018), women are now pushed out of regular employment and channelled into employment in the ‘long-term care’ sector, including in isolated contexts at home, as foster carers, family helpers, long-term care workers, and personal assistants (especially in Slovenia).
Second, in countries like Serbia where there are few employment opportunities in the health and social services sector, women seek paid employment in the care sector abroad. Some women travel back and forth while continuing to do unpaid care work in their communities of origin. While they continue to provide ‘labour of love’*3 at home, they support their family members with their savings from abroad. The question that needs further study is the extent to which the phenomenon of ‘care circulation’ affects people with disabilities. Does female care migration increase the number of disabled people living in long-stay institutions, or do the financial remittances that individuals receive from migrating family members strengthen their self-determination?
Conclusions
The post-socialist countries of former Yugoslavia, as we have shown with special attention to Serbia and Slovenia, have some similarities and some differences, when studying them from the perspective of the independent living of people with disabilities. The reasons for the development of refamilialisation and reinstitutionalisation are similar in both countries. First, policy-makers face scarce resources and have little interest in investing financial resources in the social and health care systems, let alone in progressive programmes and approaches such as independent living. Second, the paternalistic attitude toward people with disabilities, which is a pre-socialist legacy and was continued and promoted during state socialism, is still very much alive.
It is evident that in the two countries an ‘alternative logic to institutions’, as it has been termed by Ben-Moshe (2020: 69) has not been achieved and that in everyday practice the reality of deinstitutionalisation cannot even be imagined. Ben-Moshe claims that this paradigm shift is inevitable for a substantial change of achieving rights of persons with disabilities and she calls for an ‘abolitionary approach to confinement in the disability arena’ (2020: 69). Since this paradigm shift has failed to materialise, the trend towards reinstitutionalisation is not surprising.
In Slovenia, the progressive ideas of independent living and the rights of persons with disabilities are partially transformed into a repetition of the old-fashioned, family-based, patronising welfare system (with mostly parents becoming personal assistants), while in Serbia the ideas of independent living are still in their infancy and the implementation remains at the level of individual projects. While in Slovenia reinstitutionalisation is reflected in the enlargement of long-term care facilities with smaller housing units for 25 or more persons, reproducing the same institutional routine as before, in Serbia reinstitutionalisation took place after EU funds for deinstitutionalisation were used up and some persons had to return to the long-term care facilities they had already left.
Both trends, refamilialisation as well as reinstitutionalisation, can be found in Slovenia and in Serbia, but in different forms and under different conditions. While in Slovenia the refamilialisation is promoted by the paid employment of (mostly) women who have become personal assistants to their relatives with a disability, which supports families financially and limits the self-determination of individual persons with disabilities, in Serbia most of the people who support persons with various impairments remain in the private sphere of the family, unpaid and invisible. This means that people with disabilities are still dominated by what is often coercive care at home and have almost no say. In Slovenia, the user-centred approach has been disregarded in order to promote the family-centred approach, while in Serbia, people with disabilities are still waiting for the adoption of some basic legislation, such as the law on parent-carers, which will also be family-centred.
Given the ongoing phenomenon of formal and informal care migration of women, which is increasing in Serbia and to a lesser extent in Slovenia, it is doubtful that female relatives and other informal potential female caregivers will be available in the near future to maintain the level of informal unpaid care work in families. This may be a troubling development, but it may also be a window of opportunity toward defamilialisation and detraditionalisation, and a first step on the long path toward the self-determination for people with disabilities. However, the latter requires political decisions to be made and a reallocation of resources towards community-based services and personal assistance as a prerequisite for independent living for people with disabilities. Taking into account the gender perspective and the rights of persons with disabilities in traditional and patriarchal societies such as Serbia and Slovenia, government investment in community-based services would create employment opportunities for women in the field of ‘long-term care’ and personal assistance. This could prevent further migration abroad (especially in Serbia) and give people with disabilities the right to live in an ordinary environment rather than in institutions.
The comparative approach to the study of independent living in the countries of Central and Eastern Europe is particularly relevant because of a similar history of state socialism for over half a century, which has prolonged the patronising attitudes toward people with disabilities into the present day. Most of these countries lack research in the field of disability studies. Language barriers and the countries’ economic and symbolic semi-peripheral status prevent even rare research results from being internationally recognised and widely used. We hope that this article will go some way to raising awareness of these issues.