Abstract
The effects of European Union (EU) candidacy and accession on disability rights in areas of legislation and housing—especially deinstitutionalization—are examined in Bulgaria, Romania, Croatia, and the Former Yugoslav Republic of Macedonia. Analysis is based on the existing literature, including reports from the European Commission and national and international watchdog groups. Although considerable progress has been made in antidiscrimination legislation in the four countries, a lack of political will and inadequate financing means that real on-the-ground progress in advancing disability rights is limited. Nongovernmental organizations and watchdog groups can play an important role in monitoring and reporting human rights abuses in the area of disability. The article concludes with recommendations on how the EU and its administrative bodies and members of disability communities in the four countries can work together to better advance disability rights issues as part of the accession process.
Keywords
Introduction
In this article, I undertake a comparative analysis of the effects that European Union (EU) candidacy and accession have for disability rights in four East European countries—Bulgaria, Romania, Croatia, and the Former Yugoslav Republic of Macedonia. Specific areas of focus include antidiscrimination and disability-related legislation and the progress states have made in deinstitutionalizing persons with disabilities. I also consider the work of disability rights nongovernmental organizations (NGOs) in each country and highlight NGOs as important social partners in the reform process. These countries were chosen for comparative analysis because as the newest East European EU member states (Bulgaria and Romania, in 2007) and the two East European states preparing for potential accession (Croatia and the Former Yugoslav Republic of Macedonia are candidate countries), examining disability policy in these countries provides an up-to-date picture of EU effects on disability rights in newly joining states.
As these countries have prepared for and embarked on EU membership, reform in disability policy and practice has proven a major challenge. These four East European countries face many of the same difficulties in guaranteeing equal rights to persons with disabilities, including negative public opinion, budget deficits, inadequate social dialogue and partnership (e.g., between state structures and NGOs), and the sluggish enforcement of protective legislation. (See Table 1 for a comparison by country of national disability rights priorities and enforcement.) Also significant is the difference in public support of disability rights issues and reforms found in established EU countries versus the new East European member countries and candidate countries. In general, disability rights issues find less support in the countries examined in this article than in other EU countries: A 2006 Eurobarometer survey found that on average 74% of EU citizens believed that “we need more disabled workers in the workplace,” but only 48% of Romanians agreed with this statement (Discrimination in the EU, 2006). However, public opinion may be improving in the new EU countries of Bulgaria and Romania—in 2008, people in both countries reported the perception that discrimination on the basis of disability is less widespread than it was 5 years ago (European Commission [EC], 2008).
Country Comparison of National Disability Rights Priorities and Enforcement
Note: FYRM = Former Yugoslav Republic of Macedonia; NGO = nongovernmental organization; BHC = Bulgarian Helsinki Committee; AI = Amnesty International; MDAC = Mental Disability Advocacy Center; DRI = Disability Rights International; API = Association for Promoting Inclusion; MHI = Mental Health Initiative.
Below I examine disability rights in each of the four countries in relation to legislation, institutionalization of people with disabilities, and the development of civil society initiatives. I follow these four country profiles with a discussion and recommendations for how the EU and these four states might seek to ensure that more serious measures to guarantee the full social inclusion of persons with disabilities are undertaken. In preparing this article, I have drawn on the existing literature and I have consulted with scholars and activists in the countries of inquiry. (See Table 2 for a list of abbreviations used in this article. The Appendix lists useful websites for consultation on disability issues in new EU and candidate countries.)
Abbreviations Used
Bulgaria
Key challenges to the full social inclusion of persons with disabilities in Bulgarian society include deeply rooted prejudices regarding disability, inaccessibility of the built environment and public transport, barriers to education, discrimination on the labor market, a culture of segregation and institutionalization of the disabled, inadequate social and community-based services, and weak enforcement of legislation. A lack of data on the disabled in Bulgaria makes it difficult to assess and monitor disability rights in the country or to formulate adequate social policy. Research has shown that the system of social service provision to the disabled is dysfunctional and inefficient and that persons with disabilities encounter difficulties with the inaccessible built environment and are often marginalized due to low levels of education, high unemployment, and poverty. A 2007 Eurobarometer survey on Discrimination in the EU found that 45% of Bulgarians surveyed believe that discrimination based on disability is widespread in the country (EC, 2007). Bulgarians are very dissatisfied with the state pension system, a system on which many disabled citizens rely for financial support. When asked in 2007 to rate their state pension system on a scale of 1 (very poor quality) to 10 (very high quality) for a European Quality of Life Survey, respondents in Bulgaria assigned the Bulgarian state pension system an average score of just 2.7, the lowest average score given by respondents in any EU member or candidate country (Anderson, Mikulić, Vermeylen, Lyly-Yrjanainen, & Zigante, 2009).
In preparation for EU accession, Bulgarian lawmakers worked to bring legislation in line with European equality standards. In 2005, for example, the Bulgarian cabinet passed the 2006–2007 Action Plan on “Equal Opportunities for People With Disabilities.” The priorities of the Action Plan included the improvement of social services and special care providers, greater access to education for disabled children, and the abolishment of disabling architectural, transport, and communicative barriers. The Action Plan also established a monitoring system to gather information on disabled people’s social, economic, and health characteristics. In 2006, the cabinet adopted the Concept for Deinstitutionalization of Children’s Special Institutions and Social Institutions for the Disabled. So far, both plans are strategic documents whose implementation has been sluggish. Indeed, as one disability rights activist with the Union of Disabled People in Bulgaria (UDPB) stated, “We have excellent legislation but the implementation is still far from our expectations” (Valya Tashkova, personal communication, December 7, 2006).
In Bulgaria, the Agency for Disabled Persons is responsible for planning and implementing the national disability policy, as is The National Council on Rehabilitation and Social Integration, a consultative body with the Council of Ministers. Mental health practice is guided by the National Action Plan for Implementation of the Mental Health Policy of Bulgaria 2004–2012 and the Law of Health (January 2005), which dedicates Chapter Five to the area of mental health. The law emphasizes the importance of guiding principles such as deinstitutionalization and the active participation of NGOs in treatment and processes of social adaptation of the mentally disabled. Social care homes in Bulgaria are under the authority of the Ministry of Labor and Social Policy, and a specialized unit in the Inspectorate at the Social Assistance Agency carries out monitoring of institutions for the elderly and children.
There are several NGOs in Bulgaria that are actively engaged in promoting disability rights through targeted programs. One example is the UDPB, an umbrella organization uniting 319 NGOs across the country. The UDPB is a member of the National Council of People With Disabilities (NCPDB), which includes nine nationally represented organizations of people with disabilities. Several projects of the NCPDB have been financed by the EU. The UDPB has carried out programs aimed toward social integration, the removal of barriers, and labor rehabilitation of the disabled. Other large disability rights organizations include the Association of the Blind and the Association of the Deaf. The most notable project of the latter organization in recent years has been the inclusion of sign language interpretation on all the major Bulgarian news networks. The Center for Independent Living in Bulgaria advocates disability rights through lobbying efforts and promotion of the social model of disability and the values of Independent Living. The center also conducts a valuable yearly survey of disability rights in Bulgaria.
Overall in Bulgaria, small-scale advancements have been made in extending equal rights to persons with disabilities. Social provisions are in place, but benefits and entitlements for the disabled (such as tax-free import of automobiles and discounted cellular phone fees) are frequently appropriated by nondisabled citizens or abused in other ways. Much remains to be done to improve the accessibility of the built environment and transportation for the disabled. As just one example, Sofia’s new subway system, which was constructed with EU funds, is not accessible for the disabled, save for a few “end point” stations. Increased media attention to disability issues may contribute to improvements. In 2006, for example, television cameras captured scenes where wheelchair-using disability rights activists were carried up the stairs of the inaccessible Parliament building to participate in a debate. This situation embarrassed the government and drew increased public attention to questions of disability rights. Further public outcry arose on the release of a 2007 British Broadcasting Corporation (BBC) Four documentary film, Bulgaria’s Abandoned Children. The documentary drew international attention to conditions in Bulgaria’s institutions for disabled children and was a major impetus for the Bulgarian Helsinki Committee’s (BHC’s) subsequent investigations; it also resulted in the creation of a British charity called the Bulgarian Abandoned Children’s Trust.
Institutionalization and Social Services
In European countries and in North America, the institutionalization of disabled persons has been largely replaced by community services. Relative to other countries, the rate of institutionalization in Bulgaria is quite high—4.5% of the total disabled population—and deinstitutionalization has been a key focus of disability policy during the process of EU accession. In fact, Bulgaria has the highest rate of institutionalization of disabled children among all the Central and East European Commonwealth of Independent States and Baltic states (Dowling, 2005). Although raw numbers of institutionalized children have decreased since 1995, due to low birthrates the rate of institutionalization in Bulgaria actually increased between 1995 and 2001 (Dowling, 2005). Having a disabled child continues to be highly stigmatized, and parents face social pressure to place such children in an institution. The reform of mental health care practices in Bulgaria, and deinstitutionalization especially, was supported by the Programme of Community Aid to the Countries of Central and Eastern Europe (PHARE), a preaccession instrument of the EU.
Until 2005, when the Health Act entered into force, legislation relating to institutionalization of the mentally disabled was in some cases out of date, such as that regulating commitment (which did not require an evaluation by an independent body of the legality of commitments), and the system for declaring someone incompetent and appointing a guardian or trustee, which the BHC stated, allowed “for major interference in the rights and personal lives of those declared incompetent” (BHC 2005, p. 22). Some progress has been made with the Health Act, which contains statutory guarantees against involuntary commitment and requires that the person being committed have legal representation during the proceedings. However, the BHC (2006) found that involuntary commitment continues because the law does not adequately formulate the relationship between the existence of a mental illness and the corresponding danger that a crime might be committed. The Mental Disability Advocacy Center (MDAC), an international NGO based in Budapest, and the BHC have posed recent challenges to procedures in Bulgaria that allow for the stripping of legal capacity and placement under guardianship of persons deemed to have psychiatric diagnoses, a violation of rights that runs counter to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which Bulgaria has signed.
Bulgaria has been criticized internationally for the violation of the rights of disabled persons living in institutions. Not only are too many people with disabilities in Bulgaria isolated in institutions (current statistics indicate that 3,700 adults in Bulgaria live in institutions for persons with intellectual disabilities and mental health disabilities; Tavanier, 2009) but also the conditions in which they live are sometimes deplorable. Beginning in 2001, Amnesty International drew attention to the very poor conditions of several of Bulgaria’s homes for the mentally disabled, including the men’s psychiatric hospital of Dragash Voyvoda in northern Bulgaria. Amnesty International reports that during 2001, every fifth resident of Dragash Voyvoda (which housed around 140 men) died, apparently due to inadequate care, a situation that Amnesty International (2005b) characterized as cruel, inhuman, and degrading treatment in violation of international law. Due to actions taken by Amnesty International, Dragash Voyvoda was closed in 2002, and its residents were placed in other institutions, but they continued to receive inadequate care, two of them having died due to a lack of safeguards to protect them from other residents (Amnesty International, 2005a, 2005c).
In 2006, Slavka Kukova (2006) of the BHC documented the appalling environment at Pastrogor, an institution accommodating 86 women with mental disabilities. She noted the shabby and filthy conditions of the buildings and rooms, the lack of heat and food, and absence of any occupational therapy for residents. Another institution under scrutiny has been Dzkurkovo, a remote mountain institution caring for 70 children with mental disabilities. Between 1995 and 1997, 7 children died from malnutrition, hypothermia, and lung diseases. The case came to trial only in 2005, when the Plovdiv District Court declared that the woeful conditions at Dzkurkovo were caused by the state’s neglect, which left the Dzkurkovo administration without funds for heat or food. A 2004 Amnesty International investigation found a few improvements at Dzkurkovo but concluded that “little has changed in the life of most children,” who lack individual assessments, adequate rehabilitation services, and access to education (Amnesty International, 2005c, p. 3). Because of the poor conditions in many types of children’s homes, healthy children placed in such homes may become disabled due to illness and neglect. In 2010, the BHC launched its “Forsaken Children” campaign to investigate avoidable deaths of institutionalized children with disabilities in Bulgaria and to bring those responsible to justice. The BHC documented at least 200 such deaths between 2000 and 2010. Both Amnesty International and the International Helsinki Federation have concluded that Bulgarian psychiatric hospitals and social care homes provide insufficient living and treatment conditions. The MDAC has also monitored and critiqued conditions for persons with disabilities in Bulgarian institutions.
In its September 2006 Monitoring Report on Bulgaria and Romania, the EC noted that “some progress” had been made in Bulgaria in the treatment of people with disabilities but that further action was needed. The report was critical of institutionalization practices and especially the conditions in homes for the mentally ill. The Commission also stated that “in many institutions [for the elderly and for children], living and sanitary conditions remain at a very low level,” (p. 21) and that more steps need to be taken to prevent the further institutionalization of disabled individuals. The Commission encouraged greater development in the area of “social dialogue” and advocated greater involvement of social partner organizations in the reform process. These positions echo those taken by Amnesty International (2005a), which notes the following persistent problems regarding the placement and care of children and adults with mental disabilities in social care homes in Bulgaria, among others: (a) inadequate funding, resulting in substandard conditions and treatment; (b) on closure of institutions, a failure to organize community reintegration of residents, who are simply transferred to other institutions; and (c) continuing institutionalization and lack of family- and community-based services to allow disabled persons to live with family or independently.
These criticisms have been confirmed by journalist and human rights activist Yana Buhrer Tavanier, who in 2009 visited long-term residential facilities for adults with intellectual and mental health disabilities in Bulgaria, Romania, and Serbia. Tavanier found that in Bulgaria, institutions are extremely understaffed, and residents with psychiatric diagnoses, who are kept lethargic and compliant thanks to large doses of outdated tranquilizing drugs, are only nominally under the care of psychiatric professionals (Tavanier, 2009). Although the Bulgarian social ministry espouses a commitment to deinstitutionalization and the formulation of community-based services and institutional upgrades, the reality tells a different story. Noting that just 10 inmates in residential psychiatric facilities in Bulgaria were deinstitutionalized in all of 2009, although there are some 1,300 persons on waiting lists to enter such institutions, the BHC characterizes the Bulgarian government’s approach as one of “imitation of deinstitutionalization.”
Given these conditions, deinstitutionalization is a daunting challenge in Bulgaria, and it cannot be realized in the absence of quality community-based services. Such services are aimed at ensuring support to a disabled person to allow him or her to achieve and fulfill full individual capacity in his or her normal living environment. One survey in Bulgaria revealed that a mere 12% of persons with physical and sensory disabilities receiving a disability pension use social services, as opposed to 60% to 80% in Western European countries and North America (Center for Independent Living, 2004). Bulgarian respondents indicated acute needs for social services in regard to three main spheres of life: assistance for medical and dental treatment purposes, finding prescribed medicines, and access to information. They also noted that social services would facilitate their free movement and their participation in cultural, sport, and entertainment activities. Those who did use social services such as personal assistance services were satisfied with the services, but there was a lack of awareness about available services, and means-based criteria for accessing services was perceived as discriminatory by respondents.
One recent initiative in this area includes the “Social Assistant” and “Domestic Assistant” programs under Bulgaria’s European Social Fund Operational Programme on “Human Resources Development.” The programs aim to train and employ persons to assist with in-home care of the elderly and the disabled, and to promote care in the home and family environment (instead of residential institutions) for people with different types of disabilities and people living alone who need assistance. This is therefore a form of alternative services development that if successfully replicated and expanded may have a positive impact on deinstitutionalization efforts. An evaluation of these program activities is currently underway in Bulgaria.
Romania
Key barriers to guaranteeing equal rights to persons with disabilities in Romania are similar to those found in Bulgaria. These include, among others, social stigma, the widespread and continuing institutionalization of disabled children and adults, and barriers to equal access to education and employment. A 2007 Eurobarometer survey found that 48% of Romanian respondents perceive discrimination on the basis of disability to be widespread (EC, 2007).
The Romanian Constitution recognizes the right to special protection for people with disabilities, and the Constitution gives international law precedence over national legislation. Romania has ratified most major international conventions that contain provisions relating to the rights of the disabled, and antidiscrimination legislation prohibits discrimination on the basis of disability. The disabled are also protected in the government’s Social Protection Policy. The Romanian Government approved the National Strategy for the Special Protection and Social Integration of Disabled People in Romania in 2002. The National Authority for Persons With Disabilities, which has eight regional offices that oversee the implementation of disability policy, is the highest administrative authority dealing specifically with disability issues. However, Romania lacks a comprehensive Disability Act, and the country has been criticized for failing to develop an earnest national strategy for reform in the area of disability rights. Disability reform has been supported by international bodies such as the EU PHARE assistance programs, UNICEF, the World Bank, the European Development Bank, and many individual European governments and international NGOs. Baroness Emma Nicholson of Winterbourne was appointed as the European Parliament Rapporteur for Romania, and she has acted as a special monitor for disability issues. Baroness Nicholson generally has been praised for her active role in advocating for reform.
Institutionalization
Like Bulgaria, Romania has a long history of institutionalization of the disabled, especially disabled children. In Romania, warehousing was in part a legacy of the repressive Ceauşescu regime, which enforced pronatalist policies that infringed on reproductive rights, imposed oppressive socioeconomic policies, and limited access to medical and social services. After the televised execution of the Ceauşescu in 1989, it was revealed that during their reign, around 100,000 children were placed temporarily or permanently in orphanages by their destitute parents. (These and other institutions were built far from residential areas and their existence was covered up.) Institutionalized children lived in overcrowded and unsanitary conditions and did not have access to adequate treatment, therapy, or education. The results were high mortality rates, diseases such as HIV, and very high rates of developmental disabilities (Morrison, 2004). In addition, neglectful conditions in regular orphanages meant that many children lagged developmentally, were misdiagnosed with disabilities, and sent to orphanages for “irrecuperables.” Romania has been criticized internationally for the deplorable conditions in many orphanages, including institutions for disabled children, and international organizations called for the improvement of Romania’s treatment of the disabled as the country prepared for accession to the EU. In light of these revelations, most efforts of the Romanian government and Romanian and international NGOs in the area of disability reform have focused on improving conditions for institutionalized children.
In May 2006, Disability Rights International (DRI) published a report documenting the persistence of unacceptable conditions in institutions, including those for disabled children and adults. The report from an 18-month investigation alleged that some disabled children continued to live in terrible conditions in institutions, and disabled children were detained in facilities for adults in environments that were dangerous and life threatening (DRI, 2006). Some Romanian authorities were quick to deflect these criticisms, dismissing them as the “opinion” of an NGO, and called on their own representative, Baroness Emma Nicholson of Winterbourne, who, with the support of the EU, initiated the creation of the High Level Group for Romania’s Children in 2000. In her response, Baroness Nicholson emphasized several success stories of deinstitutionalization and service provision for disabled children, including the participation of 35,000 student volunteers in regular efforts to assist children in special schools and institutions, progress in university curriculum development to include community action programs, a module on Conventions for Human Rights and Child Protection, and the progress of the National Strategy for Community Action. She also showed evidence of “best practice” in Romania’s institutions for children, including the establishment of several new, small, social care facilities; two training centers for disabled children and their parents; and a day care center that allows children to live with their families, who have access to community resources. Nevertheless, after the DRI’s allegations, the Romanian Prime Minister at the time, Călin Popescu-Tăriceanu, set up a working group to evaluate the conditions in placement centers, hospitals, and boarding schools. The working group was coordinated by the High Level Group for Romania’s Children, with representatives of the National Authority for Romania’s Children, the National Authority for Persons with Disabilities, the Ministry of Health, and several NGOs.
Amnesty International has been critical of the placement, living conditions, and treatment of patients and residents in many psychiatric wards and hospitals, concluding that these conditions represent human rights abuses (Fiser, 2004). Major concerns have included
the reported living conditions in many of the psychiatric wards and hospitals, the ill-treatment of patients, methods of restraint and enforcement of seclusion, the lack of adequate habilitation and rehabilitation or adequate medical care as well as the failure to investigate impartially and independently reports of ill-treatment. (Amnesty International, 2005c, p. 8)
A shocking 17 persons died as a result of malnutrition and hypothermia in a psychiatric hospital in Poiana Mare during January and February 2004, a tragedy that raised concern by the European Committee for the Prevention of Torture and Inhuman or Degrading Punishment and the European Parliament.
Deinstitutionalization is moving forward slowly in Romania and not without problems. Although a January 2005 law prohibits the institutionalization of children below 3 years, the law does not protect those deemed “severely disabled.” Child abandonment rates in Romania remain high, and abandoned children with and without disabilities continue to be institutionalized. As in Bulgaria, critics of institutionalization charge that the poor care children receive in social homes contributes and exacerbates onset of disability; one international observer alleges that Romanian institutions “are manufacturing disability” (Smith, 2006). Some disability rights organizations doubt Romania’s commitment to true deinstitutionalization (where institutional living would be replaced by community-based and independent living services) and note that, as large institutions are closed in the country, many residents are simply moved to other, smaller, facilities. Reportedly, nearly 200 new “small” institutions have been opened in recent years, a process that threatens to drain resources from programs for foster care and other services to better facilitate the social integration of disabled children (DRI, 2006). However, according to Professor Mircea Miclea, former Minister of Education and Research, during the last 5 to 8 years, between 30% and 40% of physically disabled children in institutions have been deinstitutionalized and placed in foster homes (Professor Mircea Miclea, personal communication, March 30, 2007). However, the country still faces huge challenges in deinstitutionalizing children with mental disabilities, due to greater social stigma and the need for more medical interventions and monitoring.
As part of the deinstitutionalization process in Romania, service provision is gradually shifting to NGOs (with funding from the National Authority for Persons With Disabilities), and a new structure of government social services is being developed. A total of 18 social services are under preparation, such as those for job training and professional integration of the disabled. The EC’s September 2006 Monitoring Report on Bulgaria and Romania notes that in Romania the “creation of community-based alternative services as well as increased access to employment and education, now need to become a clear priority” (Commission for the European Communities [CEC], 2006c, p. 40). In addition, more needs to be done to support parents of disabled children economically and through service provision so they can adequately care for their children in a family setting. Such families are particularly economically vulnerable: Households including children with disabilities have 65% of the per capita income as those without and households with disabled children have poverty rates more than double the average (25% and 12%, respectively; Dowling, 2005).
Mental health policy reform is also a major challenge in Romania. In 2003, a National Action Plan on reintegrating the mentally disabled into society was launched, and in May 2006, the Action Plan on Implementing the Mental Health Reform Strategy 2006–2009 was adopted, a Plan developed with support of the EU’s Twinning Light program. In August 2006, a National Center for Mental Health was established to coordinate mental health reform. Social workers have been recruited to monitor the respect of human rights in psychiatric institutions, but the EC found that only “limited progress has been made” (CEC, 2006c, p. 5) in the area of mental health and disability, citing the ongoing problems of excess occupancy in psychiatric institutions, understaffing, and inadequate treatment. A February 2006 Evaluation Mission of Mental Health in Romania requested by the EC found few concrete plans for reform in place, a lack of communication between structures of mental health care, and an absence of community-based care for the mentally ill (Prot-Klinger, 2006). Clearly, more than cosmetic changes are needed to bring treatment of Romania’s mentally disabled population in line with accepted international and EU standards.
Croatia
Croatia signed the United Nations Convention on the Rights of Persons With Disabilities in 2007. Disability rights are an especially pressing issue in a country such as Croatia with a high number of disabled war veterans. According to the Croatian census of 2001, 9.7% of the population (or 429,421 people) reported having disabilities (Open Society Institute, 2005). Nevertheless, the rights of disabled persons to health, appropriate care, and social inclusion continue to be curtailed; inadequate and ineffectual legislation and current budgetary constraints play a large part in this discrimination. Disability is also stigmatized in Croatia and a philosophy of inclusion has not yet taken root. Progress has been made in the area of accessibility. A government program called “Together for an Accessible Croatia” invested 400,000 Euros for the construction of access ramps for the disabled in 20 Croatian towns during the mid-2000s, and accessibility laws reportedly are now being enforced for new construction (EC, 2009a).
Disability affairs in Croatia are the purview of the Office for Human Rights; the Ministry for the Family, Veterans’ Affairs, and Intergenerational Solidarity; and the Ministry of Health and Social Welfare. The latter appears to place primary focus on the medical needs of persons with disabilities, not the social contexts of disabling environments. There is also a Government Commission for Persons With Disabilities that functions as an advisory body on the protection and rehabilitation of persons with disabilities and their families. An important step was taken in November 2008 with the inauguration of an Office of the Ombudsman [sic] for Persons With Disabilities (OPD). The Croatian Constitution offers social protection for the disabled, and comprehensive antidiscrimination legislation was passed in 2009. One NGO that actively promotes issues of disability rights is the Croatian Union of Physically Disabled Persons Associations (CUPDPA), an umbrella organization of 67 local disability organizations representing most of Croatia’s major cities. CUPDPA has been especially active in the area of accessibility and promotes disability rights issues through publications and the mass media.
Croatia’s National Strategy of Unique Policy for the Disabled 2003–2006 went largely unimplemented, and the Program of the Government of the Republic of Croatia for the 2003–2007 Mandate included no mention of disability or disability rights. As of 2005, Croatia did not yet comply with the EU’s Employment Directive (2000/78/EC), which has implications for the employment rights of the disabled and will be a precondition for EU membership. Since that time, significant legislative progress has been made in equal employment for the disabled, but implementation and enforcement have been lax.
In its 2006 Croatia Progress Report, the EC stated that “more attention is needed for the implementation of the National Plan for the Disabled” (CEC, 2006a, p. 10). The Commission made the following evaluations and recommendations:
As regards social inclusion and social protection, work on the Joint Inclusion Memorandum process (JIM) between the EU and Croatia is well advanced. In terms of social exclusion and poverty in Croatian society, much remains to be done. A more strategic approach to social benefit reforms is necessary in order to provide more effective support for the most vulnerable groups of the population. Concerning people with disabilities, sufficient financial resources should be allocated in order to ensure implementation of the National Strategy for the Disabled. (CEC, 2006a, pp. 44–45)
According to the EC’s Croatia 2009 Progress Report, the newly created OPD has fostered positive impacts on disability rights in the country:
The OPD has been successful in carving out a visible role for itself. Public bodies and private enterprises are responsive to recommendations received by the OPD. A good indicator for concrete improvement is that today, almost all new buildings under construction take into account the need for accessibility of the building to disabled persons. The office in practice deals more with requests for information than with individual complaints. The media have been very cooperative in disseminating awareness-raising information. There has been good cooperation between the authorities and the ombudsman, especially on the new antidiscrimination legislation. (EC, 2009a, p. 13)
An important task of the OPD is now to continue to strengthen its capacities and extend its work into the rural areas of Croatia (the “regions” outside major cities), where awareness of disability rights issues is still very low (EC, 2010). The Croatia 2009 Progress Report noted that significant challenges still remain in terms of deinstitutionalization and the development of community-based alternatives to warehousing the disabled (EC, 2009a). Challenges also remain in the area of legislation: in its Croatia 2010 Progress Report the EC noted that “criteria for establishment of entitlements are not equally applied and legislation regulating specific rights is fragmented” (EC, 2010, p. 12).
Institutionalization
Institutionalization of the disabled is common in Croatia, and lack of funds means that conditions in facilities are not always up to standard. Even though the Croatian government has espoused commitment to a policy of deinstitutionalization, during 2006, the number of individuals confined to institutions for the mentally disabled actually increased by 19% (CEC, 2006a). One in three persons with moderate or severe intellectual disabilities are institutionalized, a situation that Croatian NGOs and the Croatian state have begun to address. Although many children with intellectual disabilities are able to live at home or in a similar family environment, family members are often compelled to have these individuals institutionalized as adults, due to a lack of community-based services. Overall, care for the disabled in households in Croatia is not that common—as noted a 2007 Croatian quality-of-life survey, “Caring for elderly or disabled relatives is not widespread, as only 6.7% of men and 9.8% of women do so on a daily basis” (Bejaković, Lipovčan, & Pilar, 2007, p. 34).
In Croatia, it is primarily civil society organizations that seek to develop community-based alternatives to institutionalization of persons with disabilities. Unfortunately, these organizations receive inadequate state support in these endeavors, although social dialogue in this area appears to have improved during 2009 (EC, 2009a). The Ministry of Health and Social Welfare continues to invest in long-stay facilities and has not made the development of community-based alternatives a priority in practice. Only one institution for the intellectually disabled has been transformed into a community-based facility, a project supported by the Open Society Mental Health Initiative (MHI). A few other attempts have been made to develop community-based care options, including an ongoing pilot project to introduce a system of personal assistants to support disabled persons and their families. But more needs to be done at the state level to develop community-based care as an alternative to institutionalization and to extend community services to persons with disabilities.
In December 2005, a video called Living Proof premiered in Croatia, a project of the Association for Promoting Inclusion (API), a Zagreb-based NGO that promotes the empowerment of persons with disabilities and the development of community-based alternatives to institutionalization. The video, supported by WITNESS, an international human rights organization, and the Open Society MHI, relates the stories of 8 previously institutionalized individuals who are now successfully enjoying independent and cooperative living options in apartments in Zagreb. Through its program of Community-Based Supported Housing, the API has helped 90 persons in Zagreb leave institutions and live in apartments either alone or with other intellectually disabled persons. The video had a real impact in Croatia and motivated Davorko Vidović, a Social Democratic Member of the Croatian Parliament, to organize high-level meetings in 2006 to address the inappropriate institutionalization of the disabled in Croatia.
Medical care for persons with disabilities in Croatia—including physical rehabilitation—though significantly improved in recent years, is still inadequate. A 2006 evaluation of rehabilitation medicine concluded that “rehabilitation medicine in Croatia is not yet appropriate to need, does not provide adequate care to all who could benefit from it, and leads to a wastage of resources” (Džidić et al., 2006, p. 211). Budgetary difficulties have sharpened this problem, with negative effects for health care and social protection of the disabled (EC, 2009a). Reforms in the system of social welfare have been stalled (as of 2010 the passage of a new Social Welfare Act was still in limbo), which creates great difficulties for disabled persons who require state support. Indeed, in 2009 and 2010, the highest number of complaints received by the OPD in Croatia related to entitlement to social rights (EC, 2010).
The Former Yugoslav Republic of Macedonia
Macedonia adopted a National Strategy for the Rights of Persons With Disabilities in 2001, and the strategy’s implementation was monitored by a coordinating body. The Strategy was later extended into 2008–2018. Little progress has been made on the National Strategy due to a dearth of resources and a lack of political will. Although some antidiscrimination measures are reflected in Article 9 of the Macedonian Constitution and in international human rights instruments ratified by Macedonia, in the EC’s November 2005 Analytical Report on Macedonia it was noted that “National measures taken so far are by no means comprehensive. Further efforts are required to implement EC legislation concerning discrimination on grounds of racial or ethnic origin, religion or belief, age, disability and sexual orientation” (CEC, 2005, p. 96).
Disability rights issues in Macedonia are promoted by a Disability Rights Inter-Party Parliamentary Lobbying Group and a variety of NGOs. In 2005, in conjunction with the Inter-Party Parliamentary Lobbying Group and several other NGOs, an advocacy group called Polio Plus (headed by Zvonko Savreski) initiated a campaign called “My Signature is the Law” to force the consideration of draft legislation on the Protection of Rights and Dignity of Persons With Disabilities. The legislation, which Savreski calls a “systematic law” because of its comprehensiveness, would not introduce new demands but rather would provide enforcement mechanisms and timelines for implementing existing Macedonian legislation vis-à-vis disability rights. The goal of the campaign was to collect at least 10,000 signatures in support of the draft legislation, which by Macedonian law would require the Parliament to consider it. A total of 18,000 signatures were obtained, but the adoption of this legislation appears to have stalled.
Besides legislative reform and lobbying, other priorities of Polio Plus have included initiatives to improve educational and employment opportunities for the disabled, public consciousness raising, and building coalitions with other Macedonian and international NGOs. In cooperation with the Macedonian Helsinki Committee for Human Rights, Polio Plus initiated a sample census to gather much-needed statistics on the disabled population in Macedonia.
Despite these efforts by civil society groups, Macedonia has not enacted the Framework Law on Anti-Discrimination, and Macedonian legislation lacks mechanisms to identify, pursue, and criminalize all forms of discrimination by State and non-State bodies against individuals or groups (EC, 2009b). In Macedonia, the UNCRPD has been signed but not ratified. The EC summed up the situation in Macedonia in 2009 in the following blunt terms: “The situation of people with disabilities has not improved” (EC, 2009b, p. 54).
Institutionalization
Unfortunately, little information is available on trends in the institutionalization of people with disabilities in Macedonia. A November 2006 EC report found “limited progress in the implementation of the National Strategy for the Rights of Persons with Disabilities,” and the EC found that the situation in institutions caring for persons with mental disabilities is still not satisfactory. The report urged the Macedonian government “to further develop social care policies, including community-based options as alternatives to institutions,” noting that “some of the existing community mental health centres operate well, but conditions in psychiatric hospitals vary greatly” (CEC, 2006b, p. 14).
In general, mental health facilities in Macedonia lack qualified staff and face a dire lack of financial resources (EC, 2009b). In 2006, the Council of Europe’s Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment visited the Psychiatric Hospital in Demir Hisar and insisted on improvements to the “very poor material living conditions” they found there, but as of September 2010, the problems had not been addressed (Tavanier, 2010). In 2008, there were reports of ill treatment of residents of the Demir Kapija psychiatric hospital, but Macedonian authorities did not investigate these allegations (EC, 2009b). Psychiatric hospitals in Macedonia were the subject of investigations by the Helsinki Committee for Human Rights in the Republic of Macedonia in 2008 and 2010, and the appalling conditions in Macdeonia’s four psychiatric hospitals have been extensively documented by journalist and human rights advocate Yana Buhrer Tavanier (2010).
Tavanier (2010) investigated the appalling conditions that inmates at these institutions are forced to endure and the lack of treatment options other than the doling out of medicines. She interviewed a range of Macedonian officials and EU-affiliated personnel about deinstitutionalization plans and the role of the EC in monitoring Macedonia’s progress in deinstitutionalization and capacity building of community-based alternatives to care. Tavanier’s report showed that the EC recognizes the ongoing problems but does not have a robust commitment to making the rectification of human rights abuses like those documented in Tavanier’s investigations, a strong precondition for Macedonia’s accession to the EU.
Thus far, only limited progress has been made toward deinstitutionalization. This is despite the fact that the Open Society MHI has offered strong technical and financial backing for the complete deinstitutionalization of the Demir Kapija psychiatric hospital, having signed a memorandum of understanding with the Macedonian government and offering generous funding for the development of community supports, alternative housing, residents’ living expenses, operating expenses, staff salaries, and other costs (Tavanier, 2010). As of September 2010, only 40 of the 280 residents of Demir Kapija had left the institution. However, in line with the 2008–2018 National Strategy to deinstitutionalize the system of social care, social partnerships between state bodies and NGOs have been formed to initiate plans for community-based care alternatives such as communal houses, day-care centers, and supports for families accepting care of disabled persons. However, these are in the very early stages, and it is difficult to speak with confidence about any solid long-term social inclusion policies for the disabled in Macedonia (EC, 2009b).
Discussion
Clearly, the accession process has led to some progress in the area of disability rights in the EU member and candidate countries examined here—Bulgaria, Romania, Croatia, and the Former Yugoslav Republic of Macedonia. Most of these countries have ratified the requisite international instruments and have solidified legislative reforms to comply with EU policy in the areas of antidiscrimination and disability rights. National Strategies and Action Plans for promoting equal opportunities for the disabled are in place in each of these countries. Antidiscrimination legislation appears to be most robust in the two countries that have already become EU member states—Bulgaria and Romania. However, the fact that Romania has yet to adopt a comprehensive Disability Act is of considerable concern. These two countries also seem to have the most robust civil society presence of disability advocacy groups, particularly Bulgaria where the Bulgaria Helsinki Commission is very active in disability rights issues. Civil society groups in Croatia and Macedonia appear much weaker.
However, there are considerable similarities between the four states examined here. In each of these countries, changes at the national level in disability policy have been more legislative and cosmetic than real, and persons with disabilities continue to be marginalized in these states. In each of these countries, there is a deep lack of statistics on disabled populations and a serious lack of enforcement of the revised and new legislation. In many cases, reform is not “home grown” or internally generated but rather is carried out in reaction to external expectations and funding. This means that commitment may be low and measures incomplete.
In 2009, when discussing reform of psychiatric institutions in Bulgaria, the director of the BHC, Krasimir Kunev, articulated this problem in the following terms: “Reform in Bulgaria is supply-driven, rather than demand-driven. It is patchy, [and] certain changes are made to absorb funds, not to achieve a real improvement in the life of all institutions’ residents” (Tavanier, 2009). Indeed, in her extensive investigations Yana Buhrer Tavanier consistently documented partial improvements, and reforms carried out primarily “for show.” The situation appears similar to what Romanian scholar Mihaela Miroiu (2007) called “room-service feminism,” a situation where the new EU states have adopted ready-made policies to protect women’s rights offered to them by bodies such as the EU without a concomitant change in consciousness or real commitment to these ideals on the part of the state or the general population. Thus far, the candidate countries seem to be enjoying “room-service disability policy,” but insufficient steps have been taken to influence public opinion, enforce legislation, and put law into practice.
Many disability rights activists in Eastern Europe interpret the fact that in 2007, Bulgaria and Romania were granted EU membership despite the EC’s awareness of great shortcomings in disability rights in the countries—particularly in institutions for disabled children and adults—as evidence that the EU considers human rights issues in candidate countries as secondary to economic and political factors as membership criteria (Tavanier, 2009). What is worse, after accession, these new member states have little incentive to push forward with reforms, as the EC’s monitoring of disability rights and other human rights issues has all but stopped. The message thus has already been sent to Croatia and the Former Yugoslav Republic of Macedonia (and to Turkey, the third candidate country at present) that EU accession is possible even in a context of ongoing documented human rights abuses.
In each of the four countries, NGOs are taking up the slack in disability rights policy and practice through lobbying efforts, small-scale programs for deinstitutionalization and independent living, improving educational opportunities for the disabled, offering vocational education and job placement, and public consciousness raising, among other areas. There is a great need for increased social dialogue between state structures and NGOs, a need that the EU has stressed in its monitoring reports.
The lackadaisical nature of progress in disability rights in the four countries examined here seems at least partially rooted in the lack of a sense of urgency, both at the level of official state institutions and among the general population. Watchdog groups and other civil society organizations can only do so much to advance disability rights in an atmosphere of negative public opinion, inadequate financing, and bureaucratic inertia. The situation is made even more difficult by the current worldwide economic crisis, which has affected each of these countries to a greater or lesser extent.
Recommendations
Clearly, there is much still to be done to ensure equal rights for people with disabilities in these new EU and candidate countries. For its part, the EU and its various administrative bodies could contribute positively by two tandem strategies: strengthening EU directives by giving them the power of law and imposing requirements for candidate states to adequately finance the inclusionary plans already in place, such as deinstitutionalization. However, much of the onus at present lies with the individual states, despite calls by groups such as the European Disability Forum for comprehensive European-wide disability legislation. Therefore, to begin to advance disability rights in a sustainable way, the new member and candidate states must genuinely commit themselves to inclusion strategies and dramatically increase funding of the existing disability equality measures in state budgets.
The four countries examined here face similar challenges in protecting the rights of citizens with disabilities. The lack of statistical data on the disabled population in each of these countries is a serious limitation. It is difficult to develop empowerment strategies and argue for the allocation of scarce resources without such data. States should make a concerted effort to gather such data, for example, in the national census. Stakeholders—perhaps advocacy NGOs, for example—should also work to implement data-gathering strategies to gather important information on the numbers and demographics of persons with disabilities; types of disability; and residence, education, and employment characteristics of disabled persons, among other parameters. Then priority areas for intervention and support can be better identified and resources better argued for.
Deinstitutionalization of the disabled population and a transition to independent and supported living arrangements are crucial steps in the inclusion process in each of these countries. To facilitate this transition, social service reform is absolutely critical. Here, East European states can do much more to share best practices and learn from other countries going through similar reform processes. During research with disability communities in Ukraine (the country is not at present an EU candidate, but its experience is nonetheless relevant), I interviewed university professors and disability rights activists who have worked together with colleagues in Canada to develop extensive social services reforms. The social work profession is being restructured from the bottom up, and a new cadre of social workers is being trained (especially in L’viv, in western Ukraine) to better address the changing needs of vulnerable citizens such as those with disabilities. Members of disability communities are directly involved in the educational and training process. Crucially, university students who are themselves disabled are being trained as social workers, a strategy that promises to strengthen service delivery to citizens with disabilities and also positively influence public perceptions of people with disabilities as professionals. If successful reform efforts such as the one in western Ukraine could be shared with other east European states, the results could be very beneficial.
An especially important aspect of social services reform in each of the states examined here is the creation of community-based social services, which are all but absent in the four countries. Drawing again on the example of Ukraine, which faces similar challenges of deinstitutionalization and the development of community-based services in a context of very limited resources and low public support, strengthening parents’ movements may be a viable strategy. In Ukraine, parents of children with disabilities (who join forces under the auspices of advocacy NGOs) have been at the forefront of deinstitutionalization campaigns and have successfully established some alternative community-based supports, such as the Dzherelo Rehabilitation Center in L’viv, a day center for children and adolescents with disabilities. Cooperative day cares are another example. In this context, the candidate and new EU countries need to recognize NGOs as important partners in developing alternatives to institutional care. However, NGOs should not be expected to carry the entire burden of social service reform and social support for the disabled, a situation that would allow states to further ignore disability issues and keep them on the political back burner. Social contracting of service provision to NGOs seems to be a viable option if coupled with additional robust state programs.
Also, much more can be done to facilitate partnerships between disability rights–focused NGOs in the new member countries, the candidate countries, the established EU member countries, and noncandidate countries (e.g., Ukraine) whose experiences are relevant. This would allow civil society groups to share strategies in the areas of lobbying, capacity building, service development, and others. One example is the Commission’s “Small Projects Programme in Turkey: Strengthening Civil Society Dialogue,” which resulted in a partnership between the International Blue Crescent Relief and Development Foundation (Turkey) and two disability rights NGOs in Romania, the Estuar Foundation and the Esperando Association. The EC could play an important role by providing incentives (e.g., grant opportunities) to organizations in the new EU and candidate countries to partner with one another to develop joint projects and share expertise.
The work of the BHC shows that watchdog organizations can play a powerful role in advancing human rights, including disability rights. The BHC has drawn attention to injustices in Bulgaria and seeks to hold the Bulgarian state accountable for these injustices. Based on this example, disability rights NGOs in the region should continue to act as watchdogs for disability policy, and they should secure membership in international NGOs (such as the European Disability Forum) that have the right to lodge collective complaints to the European Committee of Social Rights against states regarding violations of the European Social Charter. In addition, the EU could take better advantage of the expertise of local and international rights organizations and their monitoring activities and reports, including Amnesty International, the Open Society MHI, and the BHC. Another way to increase visibility of disability rights issues and improve public awareness is to ramp up media coverage of disability issues. As the success of the film Living Proof in Croatia shows, thoughtful documentation and dissemination of disability experience can have positive impacts at local and even national levels.
Moving stakeholders into positions of political power is another positive strategy that disability advocacy groups in the new and candidate EU states can pursue. In Ukraine, for example, in recent years, considerable progress has been made in enforcement of existing antidiscrimination legislation—particularly that requiring an accessible built environment—thanks to the efforts of members of the disability rights movements who have gotten elected to public office in local and city parliaments. In addition, members of disability communities have managed to get themselves appointed to so-called accessibility commissions in some cities, and as stakeholders, they are conscientious about issuing fines and enforcing regulations. These individuals—all of whom are personally touched by disability in their personal experience or in their families—have a vested interest in advancing disability rights and enforcing the antidiscrimination measures that already are in place. This is an important development and it could be beneficially replicated in the four states examined here. Until true progress is made in all of these areas—awareness, political will, enforcement, resource allocation, and community supports—the EC’s espousal that “disability is a rights issue and not a matter of discretion” will remain little more than a platitude for millions of people with disabilities and their families.
Footnotes
Appendix
Useful Websites for Consultation on Disability Issues in New EU States and EU Candidate Countries
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) received no financial support for the research, authorship, and/or publication of this article.