(Geneva) – More than 8,200 people with intellectual or psychosocial disabilities in Croatia remain in segregated institutions and psychiatric hospitals with little control over decisions that affect their lives, Human Rights Watch said today. This week, the United Nations will review Croatia’s efforts to put into effect the Convention on the Rights of Persons with Disabilities.
While the Croatian government has made some progress in protecting the rights of people with disabilities, the process of moving people out of institutions and into community-based living arrangements has been limited and slow, Human Rights Watch research found. People with certain disabilities are still legally deprived of their right to make decisions about their lives. The government’s deinstitutionalization plan should include all state and private institutions where persons with disabilities live, and the government should revise the law on legal capacity so that all people with disabilities are allowed and encouraged to make their own decisions.
“People with disabilities have spent their whole lives locked up, deprived of things so many of us take for granted, like going to school and work, or deciding what time to wake up in the morning,” said Emina Ćerimović, Koenig Fellow at Human Rights Watch. “The Croatian government needs to step up its efforts to develop community-based housing, care, and support so people with disabilities can lead the lives they choose.”
Between April and August 2014, Human Rights Watch interviewed 87 people in three regions in Croatia, including people with intellectual and psychosocial disabilities and their families; staff of institutions; representatives of nongovernmental organizations, including groups for people with disabilities; government officials; and the Ombudswoman for people with disabilities. Human Rights Watch found that people in institutions experience a range of abuses including segregation from the community, verbal abuse, forced treatment, lack of privacy, and limited freedom of movement.
In a video released by Human Rights Watch today, people with psychosocial disabilities talked about the benefits of moving into the community after living in segregated institutions, some of them all their lives.
“My dignity has been returned to me – I feel like a human being,” said Jelica, 58, who lived in an institution for 17 years before moving to an apartment in the community in 2012. “At the Home [institution] … I felt like I was in prison, like I was punished in some way and.… But, now, I regained my human dignity. Because once again, I am the one who makes decisions.”
Eleven of 46 state institutions have begun the process of deinstitutionalization, and as of July 2014, 458 people with intellectual disabilities and 96 people with psychosocial disabilities have moved into the community.
However, more than 8,200 people with intellectual or psychosocial disabilities in all types of institutions in Croatia are still denied their right to live in the community.
The Croatian government’s Plan on Deinstitutionalization and Transformation of Social Welfare Homes (“Master Plan”), adopted in 2011, excludes more than 1,800 people with intellectual or psychosocial disabilities who live in the 24 privately run but state-funded institutions. Moreover, the Master Plan does not cover the so-called family homes and foster families. Family homes, run by private individuals, accommodate up to 20 people with intellectual or psychosocial disabilities, while adults with disabilities are placed with foster families without their consent and with limited interaction with the community.
The Croatian government considers these categories non-institutionalized community living arrangements. However, Human Rights Watch research indicates that family homes are in fact small institutions and that foster homes where people are placed without their consent may amount to institutionalization, allowing people only limited interaction with the community.
People with psychosocial disabilities placed long-term, without their consent, in psychiatric hospitals are also not included in the Master Plan.
Ivan, who is in his late twenties and has a psychosocial disability, has been living in a psychiatric hospital for 16 years. “I am both humiliated and sad being here,” he told Human Rights Watch. “I would like to leave as soon as possible.”
Roughly 18,000 people with intellectual or psychosocial disabilities are placed under guardianship in Croatia, and denied their legal capacity or the right to make decisions about basic rights, such as the right to marry and form a family, to sign an employment contract, or to hold property. A significant majority live under full guardianship, under which guardians – often nominated by the state – make all decisions for them.
In 2008, Croatia ratified the United Nations Convention on the Rights of Persons with Disabilities, the human rights treaty that requires governments to move away from institutionalization and guardianship and instead to provide opportunities for people with disabilities to live in the community and make decisions about their lives with assistance, if needed.
“Most of us enjoy the right to live where and how we choose without even thinking about it as something the government could take away,” Ćerimović said. “Croatia, the newest EU member, needs to move away from paternalistic attitudes and practices based on the assumption that people with disabilities can’t make decisions. It should empower citizens who have disabilities.”
The Croatian government should take steps to ensure that everyone with disabilities in state or private institutions, long-term care in psychiatric hospitals, family homes, and foster homes without their consent is part of the deinstitutionalization process, Human Rights Watch said. The government should also invest in support programs that provide housing and freely-chosen assistance for life in the community. The support programs should be available to anyone with a disability, regardless of the person’s living arrangement.
The Croatian government should replace its guardianship regime with a system of assistance and support in decision-making that respects the autonomy, will, and preferences of the person with disability, Human Rights Watch said.
The Croatian government should also financially support organizations for people with disabilities and other groups that provide community-based services and support.
Human Rights Watch found a growing realization among people who work in programs for people with disabilities of the problems with institutionalization. Ladislav Lamza, director of the Home for Mentally Ill Adults in Osijek, a social welfare home for adults with psychosocial disabilities, told Human Rights Watch, “We now realize that an institution as a place for long-term stay is a wrong option. It seems like the institution gives a person everything, but it actually takes away the most important thing – a purpose in life.”
Human Rights Watch first documented conditions for people with intellectual or psychosocial disabilities living in institutions in Croatia in a 2010 report, “‘Once You Enter, You Never Leave’: Deinstitutionalization of Persons with Intellectual or Mental Disabilities in Croatia”. Human Rights Watch found more than 9,000 people with intellectual or psychosocial disabilities living in institutions, without access to community-based programs for housing and support. The 2014 follow-up research, in addition to the interviews, included visits to four social welfare homes, one psychiatric hospital, and seven community-based living arrangements in three regions in Croatia: Slavonija, Central Croatia, and Kvarner. Researchers also spoke to staff and former residents of two social welfare homes for people with psychosocial disabilities and one psychiatric hospital. One privately run but state-funded institution, Center for Rehabilitation Nada in Karlovac, refused permission to visit. Most of those interviewed are not identified by their real name to protect their privacy.
In August 2014, Human Rights Watch submitted a Memorandum to the United Nations Committee on the Rights of Persons with Disabilities, ahead of its upcoming adoption of list of issues on Croatia.
Life Beyond an Institution
Josip, 34, has a mild intellectual disability and has lived in an institution since he was a baby. He does not know his family, and has never spent a weekend or a holiday outside of the institution, attended school, held a job, or cooked his own food. He has never decided when to eat or what to wear, and has shared his bedroom with up to 10 other people.
Josip moved to an apartment in the community in September. Now, for the first time he is surrounded everyday by people outside the institution, and by people who do not have a disability. Now, for the first time he is be able to move freely.
“In Zorkovac [a branch of the institution], we can only walk to a sign and then we have to walk back,” he told us while he was still living in the institution. “In Karlovac [the city he has moved to], I will be able to move [about] as much as I want.”
Dijana Borović, director of the Center for Rehabilitation in Ozalj where Josip lived, told Human Rights Watch, “It was like a prison. We make them depend on us. We do everything for them. Even if they do something on their own, it is done under our supervision.”
In September 2014, Zorkovac was closed and 57 people in addition to Josip have moved out and are now living in apartments.
People with disabilities confined in institutions have not only been deprived of the choice about where and how to live, but have very limited access to education, work, and health care. For instance, people in the institutions Human Rights Watch visited had very poor dental hygiene. Staff said residents had limited, if any, access to dental care. Jovan, 54, said that during the eight years he spent in the Džakovička Breznica institution, he never had a check-up, a filling, or a dental cleaning.
Most people Human Rights Watch interviewed said they have no privacy and are obliged to follow strict, unchanged daily routines. Ivan, a man in his late twenties with a psychosocial disability, said residents have to wake up every morning before 8 a.m. to get breakfast: “Breakfast is served from 8 until 8:15. In case you miss it, you have to wait for the next scheduled meal [at midday].”
Some people who have lived in institutions were forced to work. Ognjen, 51, who has paranoid schizophrenia, has spent 12 years in various institutions. “We were forced to work,” he said. “We were forced to spend the entire day outside in the field. They would lock the home in the morning until late at night. In the middle of summer, the sun is burning, and you have to be in the field working.”
Most expressed a new sense of confidence in being able to live in the community, even if they needed some support. Josip needs help with cooking and washing clothes. Iva, 43, who has an intellectual disability, said:
We cook, wash, do everything by ourselves. We have support. I prefer the apartment to the institution. No, no, no. I never want to come back to the institution. There is no turning back because this is my home now.
Adults who lived in foster homes told Human Rights Watch that life in independent apartments in the community was much different than life in a foster home. Marina, 42, who has paranoid schizophrenia, lived in five foster homes over several years. “Living in a foster home was not easy,” she said. “You had to wake up at 7 a.m. and work. You were forced to work, mostly on the farm. I planted and harvested potato plants from early morning until late at night.”
Marina, who now lives in a community living arrangement run by the Association Susret, an independent group, said of living in the community, “It is an advantage. You can buy the food you like to eat on your own. You can go out for a walk.”
Barriers to Moving Into the Community
Human Rights Watch found that people with intellectual and psychosocial disabilities who live in institutions covered by the deinstitutionalization plan face a number of barriers to their right to independent living in the community. They are required to have an assessment by institution staff of whether they are “ready to live in the community” as a condition for moving out.
People with disabilities have the right to choose their place of residence and should not be obliged to pass a “readiness” test. Assessing a person’s needs and strengths should only help determine what kind of support and assistance should be made available to them.
Guardians still retain the right to make decisions on where and with whom people stripped of legal capacity may live. Under the Social Welfare Law, people with disabilities who have been deprived of their legal capacity can be placed in institutions – social welfare homes, foster homes and family homes – without their consent. Under this law, placement in an institution is considered a social benefit and a “right.”
A guardian’s consent for placement substitutes the person’s consent. The law neither provides for judicial oversight of placements nor any means to challenge the placements. Directors of four institutions told Human Rights Watch that a significant majority of people with disabilities in each of these institutions are deprived of legal capacity.
The guardianship system also limits the right of people with disabilities to leave institutions. “The guardian has the right to stop the process even though it is not in accordance with what the person wants,” said Mladen Mužak, manager of the housing unit at the Center for Rehabilitation Zagreb. “Without the consent of the guardian, we cannot do anything.”
In June 2014, parliament adopted a new Family Act, which abolishes full guardianship but retains the power of courts to place people under partial guardianship, restricting their ability to make decisions in some areas. Local disability advocates have raised concerns that this provision may result in the courts specifying activities that a person is not considered capable of undertaking independently and for which a guardian can make decisions, particularly with regard to health care, property, and where they will live. Such decisions, coupled with a lack of regular judicial review and other safeguards, may result in the de facto full deprivation of legal capacity and puts people at risk of being confined against their will in institutions or psychiatric hospitals.
In May, Vildana, 44, who has an intellectual disability and who has been living in the Center for Rehabilitation Zagreb, told Human Rights Watch:
At first my mother [also her guardian] said yes [to moving into the community], now she said “no” … I don’t want to live here. I want to live in a house on my own or with my mother. My mother does not allow me to live on my own.”
Staff at the institution expressed disappointment since they felt Vildana could manage living independently.
The head of the housing unit at one institution told Human Rights Watch, “Parents intervening in our [deinstitutionalization] program is a constant struggle.”
Tanja, 30, who has paranoid schizophrenia, is placed indefinitely in the Lopača Psychiatric Hospital. “I wanted to leave this place after the first four years, but I can’t because I have a guardian,” she said. “I told my sister and my doctor, but my guardian has a say.” Tanja added, “I can live on my own with support. I want to be as free as a bird!”
Tin, in his early thirties with a psychosocial disability, has lived in Lopača for more than seven years. “I am too young to be here all my life.”
Human Rights Watch research found that there is limited community housing and support for people with disabilities even if they are permitted to leave an institution. Many people with psychosocial or intellectual disabilities that Human Rights Watch interviewed said they have no real choice in deciding their living arrangements and from whom they get support once they leave an institution. To benefit from state assistance for housing and support services, they usually live in community-based living arrangements established and monitored by the institution and continue to receive assistance and service from the institution. Those who would prefer to live with friends or family or on their own are no longer entitled to government financial assistance for housing and support services.
Radmila Stojanović, president of the Association Susret, which provides housing and support to people with psychosocial disabilities, said, “People with psychosocial disabilities receive support from the state only if they are part of a program. If you exit the program, the money and support will not follow you. ”
Neda Memišević, legal expert with the Association for Promoting Inclusion, an independent group, said:
The problem with the Croatian system is that the person himself does not have any income or control over money. He does not have access to the financial support for housing. The system [housing-service provider] does.
Croatia’s personal assistance program, which is designed to help people with disabilities in their home, facilitate participation in the community, and provide some financial support, is available only to people with severe physical disabilities.
Senada, who has mild intellectual disabilities, lived in a community housing program run by the Association for Promoting Inclusion beginning in 2006, during which time she was receiving the support she needed. But after she left to live independently in Zagreb, she said:
I don’t have any kind of support. I could use support, someone who could help me maintain my home because of the difficulties I have in using my hands. But, the support is not provided to me and I can’t afford it myself. In order to get support, you need to enter a program.
Related Rights Denied
While physically moving from an institution to an apartment in the community is of enormous importance for people with disabilities, the right to live in the community involves having choice and control over their lives and should facilitate their enjoyment of many other rights. Under the international treaty, people with intellectual or psychosocial disabilities should be able to go to school, work, access health care in the community, and enjoy leisure activities on an equal basis with others.
Most of those interviewed by Human Rights Watch said one of their main unfulfilled desires was to have a job. Goran Karaš, president of a local self-advocacy group that works with people who have left institutions, said:
Employment is very important to them. They need the money, but also the independence it brings them. They feel more worthy. They are always offering their assistance; they like to help, to prove that they are worthy. When they lived in institutions, everything was done for them. They were never given a chance.
Work is also a way to overcome boredom and isolation. Luka, a 46-year-old man from Osijek who works part-time at a shop, said, “I am happy being able to work, being surrounded by people. When I leave the work for the day and am walking back home, I feel great. I am surrounded by people and I feel so good about it.”
However, people with intellectual or psychosocial disabilities who have been declared unfit to work by the Croatian Pension Fund on the basis of a medical assessment are legally prohibited from working.
In addition, the Croatian social protection system creates disincentives for people with disabilities to work; for example, those who work full-time are ineligible for community-based housing. Lack of formal education and access to education, stigmatization, and discrimination also make it very difficult for people with disabilities to obtain employment.
Access to health care in the community is also a challenge. People with intellectual or psychosocial disabilities who have moved out of institutions usually have to continue to see doctors at that institution. The situation is similar for people with psychosocial disabilities who have moved out of the Home for Mentally Ill Adults in Osijek.
Lamza, the Home’s director, said, “As a rule, Osijek’s general practitioners refer people with psychosocial disabilities who have left the Home to the Popovača Psychiatric Hospital,” an hour and half away.
In her 2014 report to the United Nations, Croatia’s Ombudswoman for Persons with Disabilities said that not even minimal progress has been made in the development of outpatient treatment for people with psychosocial disabilities or in improving the quality of health care available to them in communities, which leads to unnecessary hospitalization.
Way Forward: Promising Practices in Croatia
Despite these barriers, Human Rights Watch found a number of community-based living arrangements and support services provided by institutions themselves or by local non-governmental organizations.
For example, since 2012, the Home for Mentally Ill Adults in Osijek has actively involved its residents – some of whom have spent up to 20 years in the institution – in the deinstitutionalization process. The home developed a program called “I, Just Like You,” to eliminate the hierarchy in the institution and to promote collaboration among people with psychosocial disabilities who lived in the institution, service providers, and the community itself.
Each person spends about six months preparing for life in the community. Staff work with them to identify their needs, strengths, life goals, and plans, including how, where, and with whom they want to live and what support they need. This individual planning also involves building daily life skills such as cooking, housekeeping, personal hygiene, and even social interaction. For this purpose, the home built a mock apartment where people learn how to cook, do dishes, and wash and iron their clothes. Once the residents move to community-based housing, institution staff provide regular support services based on the individual’s needs, such as dealing with financial matters, helping with public transportation, and facilitating acess to community health services.
By October 2014, 33 people with psychosocial disabilities had left the institution and were living in several apartments in Osijek. All of those interviewed by Human Rights Watch said they live in adequate housing and feel included in the community, and some have part-time jobs and assistants who support and help them. Another 10 of the 150 people who remain in the home are expected move out by the end of 2014 into apartments provided by the Croatian government. Another 70 are expected to move out to community living arrangements under a grant from the Open Society Foundations.
In similar programs at the Center for Rehabilitiation in Ozalj, in southwest Croatia, and the Center for Rehabilitation Zagreb, Human Rights Watch found that residents with intellectual disabilities were given personal notebooks to record their needs and wants. With the help of personal assistants, they can share their goals and thoughts on who could provide them with the support they need to achieve what is important to them. This can include peer support groups as well as informal assistance from friends or neighbors.
Amorevera, a local group in Dugo Selo, near Zagreb, works in cooperation with the Association for Self-Advocacy to provide such support, with the aim of building confidence and skills of people with intellectual disabilities who have spent their entire lives in institutions where their opinions have rarely been considered. They organize weekly meetings with people with intellectual disabilities, encouraging them to talk about their rights, relationships, wishes, and other issues that are important to them. Personal assistants or caregivers are not present in order to allow people to speak freely and form their own opinions.
Goran Karaš, President of Amorevera, told Human Rights Watch:
We could see that when we asked about a certain thing, they would glance at the caretaker, expecting them to reply. You could feel how insecure they were. So we decided not to invite caregivers to meetings anymore and we observed that they dared to speak out more. We encourage them to make decisions about themselves.
Human Rights Watch found that people with intellectual disabilities who are members of self-advocacy organizations were also more aware of their rights and more empowered to make decisions about their own lives. For example, Iva attended self-advocacy meetings before moving into the community. When asked about her decision to move out, she said:
My mother didn’t want me to go, but is happy I moved to the apartment. I told her to sign. I told her if you don’t sign, I will not be your daughter, I will not look at you. Then she signed. I wanted to leave here because I wanted to see how other people live.… My apartment is great. I’ll die from happiness. What should I do? It’s beautiful that I have an apartment and roommate. I can make other decisions. Yes I can.