More than 13,500 asylum seekers remain trapped on the Greek islands in deplorable conditions as winter begins on December 21, 2017. Greece, with support from its European Union partners, should urgently transfer thousands of asylum seekers to the Greek mainland and provide them with adequate accommodation and access to fair and efficient asylum procedures.

Author: Human Rights Watch, Human Rights Watch
Posted: January 1, 1970, 12:00 am

Shantha Rau Barriga is the founding director of the disability rights division at Human Rights Watch. She leads research and advocacy on human rights abuses against persons with disabilities worldwide including: the shackling of people with psychosocial disabilities, denial of education for children with disabilities, violence against women and girls with disabilities, institutionalization of children and adults with disabilities, and the neglect of people with disabilities in humanitarian emergencies. She has worked on projects on Australia, Brazil, Central African Republic, China, Croatia, Ghana, India, Indonesia, Iran, Morocco, Nepal, Peru, Russia, Serbia, South Sudan, Tanzania, Uganda, the United States, and Zambia.  

Shantha is a founding member of the International Network of Women with Disabilities, member of the Amnesty International Advisory Group on Disability Rights, expert advisor to the Catalyst for Inclusive Education Initiative and a senior advisor to the Global Campaign for Mental Health. She also served on the UNICEF Advisory Board for the 2013 State of the World’s Children report.

Before joining Human Rights Watch, Shantha participated in the UN negotiations toward the Convention on the Rights of Persons with Disabilities, working as part of a global coalition to advocate for strong protections on non-discrimination, accessibility, education, legal capacity, independent living and international monitoring. She also previously worked with UNICEF Tanzania, carrying out an assessment on children with disabilities in refugee camps in Kibondo.

Shantha received degrees from the Fletcher School of Law and Diplomacy at Tufts University and the University of Michigan, and was a Fulbright Scholar to Austria. She speaks German and Kannada. Shantha is married and has two sons.

Posted: January 1, 1970, 12:00 am

Russian orphanages where children with disabilities grow up often transfer them to closed state institutions for adults when they reach 18 without their consent. Those who do move into the community often do not receive the support they need to live independently.

In research from five cities in Russia in 2018, Human Rights Watch documented 28 cases in which directors of children’s orphanages forced or coerced children with a range of disabilities into adult institutions once they turned 18. When children turn 18, they are legally adults and have the right to live independently and be included in the community.

Posted: January 1, 1970, 12:00 am

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Russia: Adult Prospects Dim for Youth with Disabilities

Russian orphanages where children with disabilities grow up often transfer them to closed state institutions for adults when they reach 18 without their consent. Those who do move into the community often do not receive the support they need to live independently. 

(Moscow) – Russian orphanages where children with disabilities grow up often transfer them to closed state institutions for adults when they reach 18 without their consent, Human Rights Watch said today. Those who do move into the community often do not receive the support they need to live independently.

In research from five cities in Russia in 2018, Human Rights Watch documented 28 cases in which directors of children’s orphanages forced or coerced children with a range of disabilities into adult institutions once they turned 18. When children turn 18, they are legally adults and have the right to live independently and be included in the community.

“Russian authorities should immediately ensure that staff at government-run institutions stop forcibly transferring young people with disabilities to adult institutions, leaving them isolated and segregated for their entire lives,” said Andrea Mazzarino, researcher at Human Rights Watch. “Becoming an adult should be an opportunity to make choices and experience all that life has to offer, not to remain isolated and under others’ control.”

In recent years, the government has introduced important measures designed to protect the rights of people with disabilities. These include a law banning disability-based discrimination and guaranteeing inclusive education, and a 2014 regulation defining orphanages as temporary institutions that should prepare children for independent life. But these laws often are not observed or enforced, Human Rights Watch found.

Russian disability experts told Human Rights Watch that most people with disabilities who enter institutions in Russia remain there indefinitely. An estimated 150,000 adults with disabilities are in institutions in Russia.

Ten young adults described to Human Rights Watch how orphanage directors transferred them to closed adult institutions for people with various disabilities, known in Russia as psychoneurological internats, without offering them any alternative. Some were placed in vehicles and taken to adult institutions without explanation. Others said that orphanage directors pressured them to sign paperwork agreeing to be placed in adult institutions.

A local disability rights lawyer and two local disability rights advocates told Human Rights Watch about 18 additional cases of young people transferred from a St. Petersburg orphanage to a St. Petersburg adult institution in late 2017, without the young peoples’ consent.

A young man does yard work on the grounds of a closed state institution for adults with disabilities in St. Petersburg, Russia, August 2018. 

© 2018 Mikhail Galustov for Human Rights Watch

Other young people told Human Rights Watch they consented to go to an adult institution, but that they felt compelled to do so because they did not know they have the right to live independently in the community.

In the majority of cases Human Rights Watch documented, orphanage personnel petitioned local courts to strip the young people of their legal capacity, or the right to make decisions for themselves, and to appoint a guardian, typically an institution director.

People with disabilities, activists, and lawyers in Russia said that orphanage officials often do not inform people with disabilities about the legal capacity proceedings concerning them. Dmitri Bartenev, a lawyer and expert in Russian disability law and judicial practice, said that “it is common practice for institutions to petition courts to deprive people of legal capacity when they turn 18,” and that the judges don’t always meet with individuals who are threatened with having their legal capacity stripped, in violation of Russian law.

A judge in legal capacity proceedings often orders a psychiatric assessment to determine a person’s ability to make decisions for themselves. These assessments require a person to answer questions about everyday life, such as grocery shopping. Young people with disabilities who have grown up in orphanages have had little or no opportunity for practical life experiences, leaving them vulnerable to a decision to deprive them of their legal capacity based on this assessment.

Several of those interviewed who did participate in legal capacity proceedings said that they had no viable means to challenge orphanage staff’s petition because no one had ever explained their rights and legal options.

Once young people enter adult institutions, they may face restrictions on their freedom of movement, including their ability to leave institutions and on their ability to visit and communicate with friends and relatives. Four people interviewed faced difficulties leaving institutions to live in the community even after they told institution staff that they wished to do so. Confinement in an institution on the basis of a disability without an individual’s consent constitutes unlawful detention.

Human Rights Watch also interviewed young people who left orphanages and now live on their own with the support of relatives, volunteer activists, or nongovernmental organizations (NGOs). They described how the lack of adequate education while in the orphanage, the staff’s failure to prepare them for adulthood, and lack of accessible infrastructure and health care impeded their ability to establish independent lives. Three people also said that orphanage directors maintained control over them after they left, such as by maintaining control over their government disability pension.

The Russian government should stop using coercion and deception to transfer people with disabilities to adult institutions, and end policies and practices to deny them legal capacity. It should amend federal laws that allow them to be stripped of legal capacity and provide them with full information about their rights, including to live independently in the community. It should provide programs to help them move into the community with assisted decision-making and other support they need.

The government should also make certain that personnel at institutions for people with disabilities get training on the rights of people with disabilities. It should establish a time-bound plan to end residential institutions for people with disabilities except in emergencies, and to provide options for family or other long-term care as needed.

Russia has obligations under the international disability rights treaty to ensure that people with disabilities can live independently and be included in the community. Every adult has the right to legal capacity, or the right to make decisions for themselves, such as where to live, whom and whether to marry, to sign a contract, to buy property, and other decisions. The European Convention on Human Rights (ECHR), to which Russia is also a party, also provides protections for private and family life, including the right to make choices about one’s life such as the choice to establish relationships with others.

“Russia’s recent steps to better protect the rights of people with disabilities are critical,” Mazzarino said. “But the government also needs to make a clear plan to stop confining people with disabilities and make sure they can live independently in the community, with support if they request it.”

For accounts of young people with disabilities interviewed, please see below.

 

Russian Law and Transfers to Institutions

Under the Russian Law on Psychiatric Care a person must give consent to be moved into an adult institution for people with disabilities, even if they have been deprived of their legal capacity. But disability rights lawyer and a Russian legal expert, Bartenev, said that many orphanage staff assume that a person deprived of legal capacity can and must be placed in an adult institution, even without their consent, particularly if that person does not have family or friends to care for them.

Under the Law on Psychiatric Care a local guardianship and custody agency can order placing someone in an institution without their consent, based on a medical assessment that a person is incapable of giving consent. The written statement from the medical commission must include evidence of the person’s disability and the reasons why the person is being placed in a particular institution. Human Rights Watch was not able to find evidence that any of the cases documented had this kind of determination.

Accounts from Young People with Disabilities

Human Rights Watch spoke with 18 young people with disabilities, ages 18 to 26, including people who are blind, have limited mobility, or have psychosocial disabilities, or mental health conditions, such as schizophrenia, in St. Petersburg, Leningrad region, Moscow, the Moscow region, and the Sverdlovsk region. Human Rights Watch documented the cases of 18 additional young people with disabilities through interviews with local activists who advocated for these young people’s right to live in the community.

Human Rights Watch also interviewed five children ages 10 to 15 who live in orphanages, 10 staff from orphanages and adult institutions for people with disabilities, 30 representatives from organizations that advocate for the rights of children and adults with disabilities, and three adults with disabilities who grew up in families. Human Rights Watch also interviewed two lawyers who represent children and adults living in closed state institutions in Russia. Human Rights Watch visited three orphanages for children with disabilities in the Moscow region and in St. Petersburg, and two adult institutions for people with disabilities in St. Petersburg. The full names of young people interviewed have not been used or their names have been changed to protect their privacy.

Deprivation of Legal Capacity and Placement in Adult Institutions

Among those interviewed were four young adults who spent their childhoods in Leningrad region and St. Petersburg orphanages for children with developmental disabilities. Orphanage administrators successfully petitioned local courts to deprive each of them of their legal capacity as they neared their 18th birthdays. Orphanage directors then transferred them to adult institutions in St. Petersburg.

Alexei

Alexei, 21, spent his childhood in a Leningrad region orphanage for children with developmental disabilities, and has lived in an institution for adults with disabilities in St. Petersburg since 2015. He said that when he turned 18, the orphanage director successfully petitioned a court to strip him of his legal capacity.

As part of the court proceeding to determine his capacity for independent living, a local commission of medical and education professionals asked him questions about daily living. While at the orphanage, however, staff had not taught Alexei practical skills or helped him become familiar with the world outside the orphanage. “They asked me about what things cost at the grocery store. I had never been to a grocery store,” he said.

Shortly after the commission’s review and a judge’s subsequent decision to deprive Alexei of his legal capacity, the orphanage director showed Alexei a document in which she, now his legal guardian, had authorized his transfer to an adult institution. He had no opportunity to challenge the decision.

Shortly thereafter, the director instructed Alexei to go with an orphanage social worker, who took him on a streetcar to the institution where he currently lives.

Alexei said that life in the institution is “harsh, with many rules.” He is unable to leave the building after dark or to leave the institution grounds without the administration’s permission. He said the institution director sent him to a psychiatric hospital several times as punishment for fighting with another resident. “I want to leave and live in my own apartment,” he said.

Tanya

Tanya, 19, has low hearing and a kidney condition, and uses a wheelchair. When asked how she came to live at the adult institution where she resides, Tanya replied, “I don’t know why I am here.”

Two local activists who visited Tanya before and after her transfer to the adult institution in late 2017 said that the director of the orphanage where Tanya grew up had petitioned a court to remove Tanya’s legal capacity. The director claimed that Tanya’s disabilities left her incapable of making informed decisions about her own life.

Like Alexei, Tanya faced a commission of medical and education professionals tasked with determining her capacity to make decisions for herself. Tanya had not been able to spend sufficient time outside of the orphanage to answer qualifying questions, such as about the costs of various foods. She had not been provided with a hearing aid and struggled to hear the questions.

Tanya said she wants to be able to go for walks outside of the institution grounds, and to spend time with women her age from a local nongovernmental group who occasionally visit her. “I like to go to festivals and concerts,” she said. “Here there is nothing.” And she added, “I don’t want to live anymore.”

Anastasia

Anastasia, 22, grew up in a St. Petersburg orphanage and has lived in a St. Petersburg adult institution since 2016. She has a physical disability and a developmental disability and uses a wheelchair. Like Alexei and Tanya, Anastasia was deprived of legal capacity. She said that orphanage staff had not given her a choice about going to the institution or information about her destination. Asked about her life in the institution, Anastasia said, “I don’t like it here.”

“Misha”

Misha” (not his real name), 18, has a physical and developmental disability and lives in a St. Petersburg institution for adults with disabilities. An activist familiar with the situation for young people in the institution, including Misha, said that Misha and 24 others, including Tanya, had been deprived of legal capacity and transferred to the institution by orphanage staff. The activist said the orphanage had no procedure, as far as he she could tell, to inform the young people of where they were going, but that 18-year-olds at that orphanage are routinely transferred without accessible information on their destination.

“Karina”

In some of the cases Human Rights Watch documented, orphanage directors compelled young people to agree to their transfer to adult institutions. “Karina,” 19, grew up in an orphanage for children with developmental disabilities in the Leningrad region. Karina reported that shortly after her 18th birthday in 2017, the orphanage director handed her a sheet of paper, but she had never been allowed to attend school and couldn't read it. She said the orphanage director told her, “Sign this. You’re going to the internat [closed medical institution].” Seeing no other choice and having no information about options to live in the community, Karina signed the document, which was an authorization for her transfer to an adult institution.

“Kirill”

In other cases, Human Rights Watch documented how orphanage staff transferred young people to adult institutions directly, without the individual’s consent or knowledge about how that decision was made. “Kirill,” 26, who has a developmental disability, grew up in a St. Petersburg orphanage. He said that one day in 2012, orphanage staff told him to get into a van that took him and several other young people from the orphanage to an adult institution in St. Petersburg, without informing them of the destination. Human Rights Watch could not determine whether “Kirill” and the others transferred with him had been deprived of their legal capacity.

In the adult institution, staff forced Kirill and the other young people to remain in bed for several weeks and undergo medical tests. Kirill said he did not consent to the medical tests.

Once in the adult institution, Kirill was not provided with many of the activities that he had in the orphanage, such as going for walks with volunteers from nongovernmental groups. In 2015, Kirill asked the director if he could leave the institution and live on his own. “She told me I am not capable of living independently,” Kirill said.

In 2015, Kirill met a group of volunteers from a local disability rights group, who helped him leave the institution. They also helped him to rent an apartment, find a cleaning job at a local store, and learn skills such as cooking and managing money. The orphanage had not allowed Kirill to go to school and did not teach him any skills for independent living. Kirill said, “It’s great living on my own. I have work. I have obligations to my supervisor, to my friends. I am getting to know the country where I was born.”

“Dima”

In 2018, adult institution officials sent “Dima,” 19, who has a developmental disability, to forced treatment in a psychiatric hospital for three days after Dima and another young man with a developmental disability, “Vadim,” met with a lawyer to challenge the officials’ court petition to strip them of their legal capacity. The officials claimed they sent Dima to the hospital for an outside medical opinion on his ability to make decisions for himself, but Dima’s lawyer said that he did not consent to this treatment and that he lay in bed for three days with no testing. Dima believes that the move was in retaliation for challenging the efforts to deprive him of his legal capacity after he asked to leave the institution and live on his own.

Dima was able to get the institution’s petition to the court dropped and was eventually able to join Vadim at a community-based assisted living facility with the support of two local nongovernmental organizations.

Vlad

Vlad, 19, who is blind, grew up in an orphanage for children with disabilities in the Moscow region. Although he studied for six years in a special school for children who are blind, Vlad described the lack of support to develop skills needed for his transition to adulthood:

Any time we tried to make our own decisions, they [the orphanage staff] asked questions: “Why? Why would you buy that? Why did you choose that nickname for yourself? Why do you need to go into town?” Independence is the ability to think for yourself. For example, if you want to go somewhere, you should know how to find the right public transport, how to pay for it, and how to ask someone for help. This kind of learning was absent.

When he was 14, Vlad told the orphanage directors that he wanted to live on his own as an adult. The directors tentatively agreed but sought to maintain control over him. Vlad recalled one of them saying, “Well, then we need you to keep coming back. You are obligated to remain under our watch, and to do as we say.”

Vlad left the orphanage when he was 18 and enrolled in a local college. Although the orphanage was no longer his guardian, for three weeks after his departure the orphanage director refused to allow Vlad to access his government disability pension, which continued to go to the orphanage. “During weekly visits, I had to answer questions about how I spent the money she gave me,” he said. “She didn’t even give me my full pension.”

Vlad regained control of his finances with the help of the college director and a mentor from the orphanage, who went before a local commission to seek approval for him to live independently.

“Maria”

“Maria” 20, who has a physical disability and uses a wheelchair, grew up in an orphanage for children with disabilities in St. Petersburg. In 2016, Maria heard that another young person in her group planned to move to an apartment in St. Petersburg, and she told an orphanage social worker that she wanted to do the same. The social worker connected Maria with a local group, which helped her to find an apartment.

Although Maria lives independently, her time in the orphanage compromised her ability to support herself. “I never got an education in the orphanage,” she said. She needs to complete six years of missed education to enroll in a local college and is studying online. Attending college could still be difficult as the college in her neighborhood lacks an elevator that would enable her to attend classes on the second floor.

“Sveta” and “Ivan”

“Sveta” and “Ivan,” both 23, are a married couple who grew up together in a St. Petersburg orphanage. Sveta, who has a physical disability that affects her mobility, described how as she became a teenager, she began to think about leaving the orphanage.

I told the social workers, “I want to live independently.” They responded, “You’ll go hungry. You don’t know how to spend money. Your [disability] pension isn’t enough to live on.”

Around Sveta’s 18th birthday, the orphanage director called Sveta to her office and gave her a document to sign that would have authorized her transfer to a St. Petersburg adult institution:

I could not read it because I didn’t own eyeglasses. I asked them to read it for me, and they said, ‘No. That’s your job.’ My grandmother told me never to sign a document without reading it or knowing what it says. So, I didn’t sign it.

In 2013, a local group helped Sveta move to their group apartment for young people with disabilities leaving the orphanage. Sveta and Ivan were engaged.

When Ivan turned 18 that same year, he told the orphanage director that he wanted to go to a particular adult institution that he believed would be nearer to his sister and her family. Although he and Sveta were already engaged, Ivan believed that his only option was to live in an institution. The staff granted Ivan’s request.

But Ivan soon realized that he had misread the map and the institution was not near his family. The institution director limited Ivan’s telephone contact and visits with his sister and with Sveta. He told the institution director that he wanted to live outside the institution with Sveta. The director responded by threatening to petition a court to deprive Ivan of his legal capacity.

Ivan contacted his sister, who sought outside legal help. The institution director threatened to send Ivan to a psychiatric hospital if he continued to fight for his legal capacity and seek to live on his own. Before she could act on her threat, with the help of his sister, Ivan left the institution and joined Sveta.

In 2016, the couple married and moved to an apartment owned by Ivan’s family.

Sveta and Ivan face many challenges living in the community. Their third-floor apartment building lacks an elevator, making it difficult for Sveta to get in and out. She also has difficulty getting health care and physical therapy at her local state clinic because “doctors look at me and tell me I need to be in an inpatient hospital.” They spend a substantial portion of their pensions on health care at private clinics, which does not leave them enough for sufficient food.

Sveta works on a contractual basis as a taxi dispatcher. She received most of her education at the orphanage, although she attended a community-based school for two years. Ivan received only limited education in the orphanage.

Ivan would like a job, but his documentation from the orphanage states that he is “unable to work,” even though he has no documented disability that would preclude him from working. To apply for a job, Ivan would need to visit multiple doctors and convince them to revise this paperwork.

Despite these difficulties, Sveta and Ivan are confident that they have made the right choice. Sveta said, “It’s our life. Our mistakes are our mistakes. And we are in love.”

Rights to Private or Family Life, Effective Remedy, Freedom from Arbitrary Detention

Russia is party to the ECHR, which guarantees freedom from interference in a person’s private or family life, including the right to make choices about one’s life such as the choice to establish relationships with others. The ECHR also guarantees the right to correspond with friends and family and the right to respect for one’s home. States parties have a positive obligation to ensure conditions for the realization of these rights.

Russia is also a party to the Convention on the Rights of Persons with Disabilities (CRPD), which requires governments to provide opportunities for people with disabilities to live independently in the community, with support as necessary, including the development of an inclusive and accessible environment. States parties to the CRPD should make information accessible to people with disabilities.

Children are guaranteed special protection and care by international law, in particular under both the International Covenant on Civil and Political Rights (ICCPR) and the Convention on the Rights of the Child (CRC), which Russia has ratified. Protections are heightened for children who are in institutional care. The CRC provides that, “a child temporarily or permanently deprived of his or her family environment. shall be entitled to special protection and assistance provided by the State.” The state therefore has special duties toward these children, among which is to help them prepare for adulthood.

The United Nations Committee on the Rights of the Child has specifically addressed the situation of adolescents, including adolescents with disabilities, in alternative care. Noting the “significant evidence of poor outcomes for adolescents in large long-term institutions” the committee also recognizes that “those with disabilities are often denied opportunities for community living and are transferred to adult institutions, where they are at increased risk of being subjected to continuing violations of their rights.”

The committee notes that states have obligations “to adopt measures to support the independence and improve the life chances of adolescents in alternative care and address the particular vulnerabilities and insecurities they face as they become old enough to leave such care.” It has said that governments should ensure “support in preparing for the transition, gaining access to employment, housing and psychological support.”

Under the ICCPR, the ECHR, and the CRPD, in the determination of a person’s civil rights, that person is entitled to a fair and impartial hearing. Anyone whose rights have been violated is entitled to an effective legal remedy. The ICCPR, the ECHR, and the CRPD guarantee freedom from arbitrary deprivation of liberty.

Recommendations

The Russian government should:

  • End formal or informal practices that pressure, coerce, or deceive young people with disabilities to transfer to or remain in adult institutions;
  • End formal or informal policies or practices of denying children with disabilities in institutions legal capacity upon reaching adulthood;
  • Amend federal legislation that permits people with intellectual, psychosocial, or physical disabilities to be deprived of legal capacity and placed under guardianship; ensure full legal capacity regardless of disability, and develop and implement a system of assisted decision-making;
  • Ensure that every child approaching adulthood is provided with accessible information about their rights, including to independent living in the community;
  • Create and implement programs to prepare children, including those with disabilities, to leave institutions;
  • Develop support systems during the period when children approach age 18 out of institutions and leave institutions, with a view to providing differentiated support based on an individual’s requirements;
  • Ensure that all personnel working in state institutions for children or adults with disabilities complete training programs on the rights of people with disabilities, including the right to live in the community as adults;
  • Establish a time-bound plan to end the use of residential institutions for all children and adults. Children should only be placed in residential institutions in emergency cases or to prevent the separation of siblings, and for a limited duration, and with planned family reunification or placement in other appropriate long-term alternative care as the ultimate outcome for the child.
Posted: January 1, 1970, 12:00 am

I’ll start with a sentiment I hear a lot when I say I work on older people’s rights: “Oh, nursing homes can be awful, but my dad’s in a good one.” I would hope that everyone living in a facility is living in a “good” one. But unfortunately, that just isn’t the case. And what is more, even in the ones people think are “good” ones, with chandeliers and carpeting, there are risks inherent in the segregation from the outside world, risks in the situation of control a facility has when a person wholly depends on it.

We cannot overstate the risks. This year, we documented the widespread inappropriate use of medicines to sedate older people with dementia living in nursing homes in the US, often without their consent, in our report “‘They Want Docile’: How Nursing Homes in the United States Overmedicate People with Dementia.” I and others documented older people living afraid, wanting to go home.

News reports have documented sexual assaults in nursing facilities in the US, that even when reported, which is rare, may not be believed. About half of the nursing homes in the US ask for a binding arbitration agreement upon admission, which means residents waive their right to sue in court if they have any complaints against the facility or staff.

We can all agree that those problems are outrageous. But the same invisibility to the outside world, the institutional isolation and control that allows those problems to fester is also a breeding ground for many more little indignities. It’s not being able to choose your own breakfast, as a woman in Chicago explained to me last winter. She doesn’t like sweet things, and that’s all her facility offers. It’s not being able to get up and get dressed when you want, as vividly captured in a September news report on nursing homes in Australia, with hidden cameras showing a woman awake in bed for hours, calling out in the dark, waiting.

Independent living,” according to the Committee on the Rights of Persons with Disabilities, “should be regarded as the freedom to choose and control, in line with the respect for inherent dignity and individual autonomy.” People should receive support to enable them in their own homes, where they can maintain their connections with their community, their family, their privacy and their usual way of life.

Fortunately, public policy to support independent living has been gaining momentum in the UK, and in the US, and other places, and older people should have access to that support. Living with the support we need is a critical aspect of protecting our rights as we age, and it’s one I will continue to fight for, together with members of the Ageing Equal Campaign and other partners.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

A 13-year-old boy with learning disabilities, who had to leave the European School after it declared itself unable to meet his needs, prepares homework for his new school. 

© 2018 Lea Labaki/Human Rights Watch
(Brussels) – European Schools, a network of 13 intergovernmental schools primarily teaching children of European Union employees, do not do enough to accommodate the needs of children with disabilities, Human Rights Watch and the European Disability Forum said in a joint report released today.

The 22-page report, “‘Sink or Swim’: Barriers for Children with Disabilities in the European School System,” found that while European Schools are paying increasing attention to inclusion, children with disabilities continued to face problems. They are rejected, pressured into changing schools, or are not provided with appropriate accommodations and support to allow them to learn and thrive in an inclusive environment.

“How can EU institutions claim to promote inclusion and diversity, if the needs of children of their own employees aren’t being met?” said Lea Labaki, of the disability rights division at Human Rights Watch. “At the very heart of the European project, the European School system is not providing children with disabilities the fully inclusive education they are entitled to.”

The European Schools’ Board of Governors’ biannual meeting on December 4-7, 2018, will include a discussion of an internal report on inclusive education and an evaluation of the schools’ educational support policy. The board should develop concrete measures to make European Schools inclusive of children with disabilities.

Human Rights Watch documented the cases of 12 children and one young adult with a range of disabilities who were enrolled in the four European Schools in Brussels and one in Luxembourg or whose enrollment application was refused in the last five years. Human Rights Watch interviewed 27 people, including children, parents, school directors, support coordinators, inclusive education experts, the office of the European Ombudsman, officials of the European Commission’s Directorate-General for Human Resources and Security, and the deputy secretary-general of the European Schools.

“While over the years some improvements have been made, the fate of students with disabilities is still concerning,” said Yannis Vardakastanis, president of the European Disability Forum. “We want the European School system to be a great example for Europe, promoting diversity in all its forms, and ensuring inclusive education to all students with disabilities.”

The EU and its 28 member states have ratified the UN Convention on the Rights of Persons with Disabilities (CRPD), which guarantees children with disabilities the right to inclusive education.

Despite states’ obligations under the convention, European Schools allow excluding children with disabilities. Their Policy on the Provision of Educational Support states that “European Schools do not offer a fully inclusive education system…. [T]he school is entitled to declare itself unable to meet the needs of the pupil.”

Nine parents interviewed reported feeling pressured to remove their child from the school. In some cases, parents said, they experienced harassment, with school officials repeatedly calling them in to complain about their child’s behavior or academic performance.

“Louise,” a 15-year-old girl who has dyslexia, left the European School after struggling for years to get basic accommodations for her learning disability, such as the right to use a device to take pictures of the blackboard. “This school was like an anthill, every year they filtered the best to keep only the elite,” she said. “Those who are a little defective, they do everything they can to reject them. They wanted us to feel bad enough to leave on our own.”

Under the UN convention, children with disabilities have a right to individualized support measures and reasonable accommodations in school, including adapted teaching methods, material and program, assistive technology, and alternative examination formats. Parents said that such accommodations were not systematic and depended on the willingness of school staff.

Further, European Schools offer only one curriculum leading to the European Baccalaureate, which cannot be adapted to children with disabilities’ varying needs, strengths, challenges, and learning styles. In one case, the director told the parents of a boy with learning disabilities that he could move on to secondary school, but that he would never be able to catch up and the school would be “limited to a sort of day care.”

The 13 European Schools in Belgium, Luxembourg, Germany, Spain, the Netherlands, and Italy serve 27,000 children in 20 official EU languages. While there is no data on the number of pupils with disabilities, nearly four percent receive intensive support for “special educational needs,” many of whom have disabilities.

European institutions provide their employees co-funding for the enrollment of children with disabilities in private schools, where fees can be as high as €50,000 a year. The European Commission alone is currently providing such funding to an estimated 70 children for a total budget over €1.5 million, a substantial expenditure of EU funds.

Most parents interviewed said that some teachers and assistants were doing their utmost to help their child and that attitudes were evolving positively.

For these positive experiences to become the norm, the Board of Governors should adopt a policy on inclusive education, develop teacher training, and introduce flexibility in the curriculum, Human Rights Watch and the European Disability Forum said. The European Commission, which provides more than half of the European Schools’ budget, should lead the process and ensure that its funding contributes to an inclusive system.

“Even though European School staff make adjustments, the needs of children with disabilities shouldn’t have to depend on their good will,” Labaki said. “European Schools should make a commitment to inclusive education in policy and practice, and back it up with adequate resources.”
 

Posted: January 1, 1970, 12:00 am

Shantha Rau Barriga, Director of Disability Rights, delivers a statement at the first-ever Security Council Arria formula meeting on persons with disabilities in armed conflict. 

© 2018 Human Rights Watch

We would like to extend our appreciation to the Permanent Mission of Poland and the other co-sponsors of this Arria meeting for bringing the situation of persons with disabilities in armed conflicts out of the shadows, particularly on the occasion of the International Day of Persons with Disabilities today.

Council Members, Member States, distinguished colleagues.

In 2015, Human Rights Watch interviewed Andet, a 27-year-old man who uses a wheelchair, in Bangui, Central African Republic. This is how he experienced an attack by the Seleka rebels, during which his wheelchair was looted:

“They came and started killing people. I was fast asleep when I heard gunshots and woke up to find myself alone at home. My parents had fled without me. I started shouting and crawled to the entrance of my house but when I looked outside, there was no one.” One day later, a young boy carried Andet – many times his weight – a few kilometres to the nearest IDP camp.

Over the past years, Human Rights Watch has documented the heightened risks faced by people with disabilities in conflict areas including Central African Republic, Colombia, Iraq, South Sudan, Syria and Yemen.   

We have found that persons with disabilities in situations of armed conflict have been abandoned, and faced violent attacks, forced displacement, and even ongoing neglect in the humanitarian response. Their plight, however, has been largely invisible.

We therefore hope to bring some of their voices to those with the power and responsibility to act.

In South Sudan, a 45-year-old woman named Mary told Human Rights Watch in 2017:

“When the fighting broke out, we fled to the UN compound. We left my mother and brother-in-law behind because they couldn’t walk, and we couldn’t carry them. [Another relative], who had a mental health condition, would not leave his father behind so they all burned together in the fire.”

In many cases, persons with disabilities could not escape the violence simply because they had no wheelchairs, tricycles, or crutches, which were lost in the chaos, left behind, or looted.

In other cases, persons who are deaf or have a psychosocial or intellectual disability were shot or attacked simply because they didn’t hear, know about, or understand the danger they were facing.

Persons with disabilities who managed to reach sites for internally displaced people or refugees often faced difficulties accessing food, sanitation, and medical assistance.

“François,” who fled Ndassima, Central African Republic, described his struggles at the PK8 camp to Human Rights Watch in 2017. He said: “The access to the toilets is so difficult. I have to walk with my hands and I don’t have gloves. I must wrap my hands in tissue if I can find it. Most of the time I can’t find it. Honestly it makes me pity myself.”[1]

Hanan, a 4-year-old girl with cerebral palsy and epilepsy in Yemen, needs medications that have become unaffordable as the conflict has continued. Hanan’s father told Human Rights Watch: “[With regular] medication, she experienced an epileptic seizure only once every two weeks. But now she experiences a seizure twice a day.”

Protracted conflicts – such as in Central African Republic, South Sudan or Afghanistan – have increased or exacerbated disabilities and trauma.

Two years ago, I met a woman who fled Afghanistan who told me she regularly wakes up with nightmares, because of the violence and brutal killings she witnessed in Kabul. She told me that she has suicidal thoughts when she looks at herself in the mirror, but she has had almost no access to psychosocial support.

Council Members, Member States, distinguished colleagues,

Today’s landmark Arria formula meeting – held on the International Day of Persons with Disabilities - sheds light on the disproportionate impact of armed conflict on people with disabilities. This is a great step forward.

But, more needs to be done.

First, the Security Council should step up efforts to gather evidence about the risks faced by people with disabilities. Without effective UN monitoring and reporting, the full impact of conflicts on people with disabilities will remain unclear.

Second, every UN peacekeeping mandate should explicitly call for the protection of people with disabilities as part of its protection of civilians mandate. We were pleased to hear the representative of the United Kingdom call on the Council to commit to this today.

Third, the Security Council should also urge governments and UN agencies to take a more inclusive and participatory approach toward people with disabilities during conflicts, in the spirit of “Nothing About Us Without Us”, as the US representative reminded us.

Building on this meeting today, we urge the Security Council to hold an open debate on the situation of persons with disabilities as part of the peace and security agenda in 2019.  

The Security Council’s mandate on protection of civilians includes all civilians – including people with disabilities. Let’s make sure that the voices of Andet, Mary, Hanan and countless others with disabilities resonate in this chamber and echo across all relevant UN agencies.  

Thank you.

Posted: January 1, 1970, 12:00 am

Restraints on a bed in Lopaca Psychiatric Hospital. Emina Cerimovic/Human Rights Watch 2014. cc

On December 3, the world celebrates the International Day of Persons with Disabilities. That includes Croatia, where the Zagreb city authorities are sponsoring an art exhibition and concert, and the city of Krapina will host a walk to raise awareness about disabilities. But for many people with disabilities in Croatia, it will be just one more day spent trapped and segregated from their communities in institutions across the country.

Ivan, a 34-year-old man with a psychosocial disability, has lived in several different institutions since he was 9. Maja, a 41-year-old woman with an intellectual disability, told me in 2014 that she had lived in an institution since “I was a little girl.” Across Croatia, 9,800 other adults and children with intellectual and psychosocial disabilities are denied the right to a life in the community. 

A decade has passed since Croatia ratified the UN Convention on the Rights of Persons with Disabilities, an international treaty that prohibits the detention of people simply on the grounds of their disability and upholds the right of all people with disabilities to live independently in the community, with choices equal to those of others.

Although the EU allocated European Structural and Investment Funds to replace 18 institutions in Croatia with community-based and inclusive services, to date, according to official figures, the government has used the funds for the transformation of just five institutions.

The government has yet to adopt a new Operational Plan for Deinstitutionalization. The old one expired in 2016.

In October 2018, five disabled people’s and human rights organizations, including Human Rights Watch, sent a letter to the Croatian Prime Minister Andrej Plenković, urging him to end the confinement of children and adults. We have yet to receive a response.

People with disabilities in Croatia shouldn’t have to wait any longer to exercise their fundamental rights. As an EU member state, Croatia should fully meet its obligations under the disability rights treaty to respect the rights of everyone who has a disability to live independently in the community. The government should support and invest in community-based services to empower and support people with disabilities. Only then can people with disabilities in Croatia fully join the celebration.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

(New York) – On December 3, 2018, United Nations Security Council members will shine a spotlight on the disproportionate impact of armed conflict on people with disabilities, Human Rights Watch said today. People with disabilities have been invisible on the peace and security agendas of many countries around the world but are among the people most at risk during conflicts and humanitarian crises.

More than one billion people worldwide, or about 15 percent of the global population, have a disability. People with disabilities are recognized as among the most marginalized and at-risk population in any crisis-affected community. An estimated 9.7 million people with disabilities are forcibly displaced as a result of conflict and persecution and are victims of human rights violations and conflict-related violence.

The December 3 informal “Arria” meeting of members of the Security Council will be the first time the Security Council had devoted a separate discussion to the impact of conflict on people with disabilities, though it has recognized the particular risks experienced by people with disabilities in some resolutions about individual countries.

A relative pushes John Biel Dup’s wheelchair through the dirt paths of Protection of Civilians Camp 3 in Juba,. The uneven paths make it difficult for people with physical disabilities to move around the camps..

© 2017 Joe Van Eeckhout for Human Rights Watch

“The Security Council’s mandate on protection of civilians includes all civilians – including people with disabilities,” said Shantha Rau Barriga, disability rights director at Human Rights Watch. “It’s crucial for the Security Council to gather the information needed to make sure that ‘No one left behind’ is not mere rhetoric.”

Research by Human Rights Watch over the last five years in the Central African Republic, Cameroon, Iraq, Myanmar, South Sudan, and Yemen shows that people with disabilities in situations of armed conflict have faced violent attacks, forced displacement, and ongoing neglect in the humanitarian response to civilians caught up in the fighting. In some cases, people with disabilities were abandoned in their homes or in deserted villages for days or weeks, with little access to food or water. Many died because they could not flee attacks. People with disabilities who reached sites for internally displaced people or refugees often faced difficulties accessing food, sanitation, and medical assistance.

The Security Council should step up efforts to gather evidence about the risks faced by people with disabilities and to include people with disabilities in its efforts to protect civilians during conflicts, Human Rights Watch said. Every UN peacekeeping mandate should explicitly call for the protection of people with disabilities.

During conflicts, many challenges arise for all civilians affected. These challenges are heightened for people with disabilities, as institutional, attitudinal, and environmental barriers and risk factors are exacerbated in crisis or conflict situations.

In South Sudan, during the conflict that has been under way since 2013, a 45-year-old woman told Human Rights Watch:

“When the fighting broke out, we fled to the UN compound and we left my mother and brother-in-law behind because they couldn’t walk, and we couldn’t carry them. The son of my brother-in-law, who had a mental health condition, would not leave his father behind so they all burned together in the fire.”

Conflicts also affect support networks and access to services, including protection and humanitarian assistance. In South Sudan, Human Rights Watch found that people with limited mobility were sometimes not able to reach aid hubs far from their displacement camps and could not always rely on family or friends to carry them there.

“François,” who fled Ndassima, Central African Republic, described his struggles at the PK8 camp to Human Rights Watch in 2017. “The access to the toilets is so difficult,” he said. “I have to walk with my hands and I don’t have gloves. I must wrap my hands in tissue if I can find it. Most of the time I can’t find it. Honestly it makes me pity myself.”

In camps for Rohingya refugees in Bangladesh, people with disabilities and older people have had trouble navigating the steep and slippery footpaths that were often the only way to move in and out of their huts. Kahimullah, who is 70-years-old and partially blind with respiratory problems and difficulty walking, told Human Rights Watch in May that he was not receiving any specialized services or assistance.

Data on people with disabilities is essential to adequately guide protection efforts that reflect the realities of all civilians, Human Rights Watch said. The Security Council should instruct peacekeeping missions and relevant UN bodies to monitor and report on abuses against people with disabilities. Without effective monitoring and reporting, the full impact of conflicts on people with disabilities will remain unclear.

The Security Council should also urge governments and UN agencies to use a more inclusive and participatory human rights-based approach toward people with disabilities during conflicts, Human Rights Watch said. To build on the December 3 meeting, the Security Council should hold an open debate in 2019 on the situation of persons with disabilities in relation to peace and security issues.

The Convention on the Rights of Persons with Disabilities has been ratified by 187 countries, including all 15 current Security Council members except the United States. It includes a specific provision on people with disabilities in situations of risk and humanitarian emergencies. The Charter on Inclusion of Persons with Disabilities in Humanitarian Action, announced by then-UN Secretary-General Ban Ki-moon at the World Humanitarian Summit in May 2016, is also now endorsed by 26 countries and over 200 UN agencies; global, regional, and national organizations of persons with disabilities; and civil society organizations.

“Full and meaningful consultation with, and participation of, people with disabilities is essential to understanding the risks they face during wartime and allows the Security Council to draw from their experience and expertise,” Rau Barriga said.

Posted: January 1, 1970, 12:00 am

Imdad Ali, who is aged around 50, was sentenced to death for the murder of a religious cleric in 2002 and is set to be hanged tomorrow.

© Reuters (Representative image)

This week, a medical board confirmed that Saleem Ahmad, a prisoner on death row for 14 years, has chronic schizophrenia.

Ahmad, 50, had been scheduled to be executed in November 2017, but a court suspended his execution and ordered a medical board to assess his mental health. Ahmad – who was convicted of murder – has been in prison for more than 17 years.

This is a scathing indictment of Pakistan’s criminal justice system and should be used as an opportunity for reform. While the death penalty is inherently cruel and should be abolished, executing an individual with psychosocial disabilities violates Pakistan’s international legal obligations. The United Nations Human Rights Committee and UN special experts have determined that the execution of a person with a psychosocial disability violates the right to be free from cruel, inhuman, or degrading punishment.

Ahmad is one of many prisoners with psychosocial disabilities on death row. In April, the Supreme Court of Pakistan reviewed the death sentences of Kaniz Fatima and Imdad Ali, death row convicts with psychosocial disabilities. During the proceedings, the Chief Justice of the Supreme Court remarked: “Neither reason nor sensibility allow me to believe that we can execute a mentally ill or disabled person.” Kaniz Fatima and Imdad Ali remain on death row.

Kaniz Fatima is one of the few women on death row in Pakistan. According to her lawyers, she has not spoken for 12 years and is unable to eat, drink, or take care of herself without assistance. She has been in prison for 29 years.

She is among more than 8,000 prisoners on death row in Pakistan – one of the world’s largest populations of prisoners facing executions. Pakistani law mandates capital punishment for 28 offenses, including murder, rape, treason, and blasphemy.

The arbitrariness, unfairness, and high risk of error in capital prosecutions in Pakistan has been documented extensively. The death penalty is inherently cruel – but even more so for those who may not recognize their crimes. It good to see Pakistani authorities beginning to realize executing people with psychosocial disabilities is an affront to human decency and serves no criminal justice purpose. Pakistan should strengthen its justice system and work towards a complete moratorium on death sentences, rather than sending people like Saleem Ahmad to the gallows.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Andrea Mazzarino is a social worker and activist who advocates for the rights of vulnerable children, including children and young people living with disabilities. During 2012-2015, she was a research fellow in Human Rights Watch's Europe & Central Asia division, where she authored three reports on the situation of children and adults with disabilities living in Russia. Andrea is currently a therapist working directly with children and their families in the Washington, D.C. metro area, while collaborating with Human Rights Watch on its children's and disability rights work in Russia. Andrea has a Ph.D in cultural anthropology from Brown University, and an MSW in Social Work from the University of Washington.

Posted: January 1, 1970, 12:00 am

The headquarters of the Council of Europe in Strasbourg.

© 2018 Human Rights Watch
(Brussels) – Council of Europe member states should oppose new proposed standards regulating the detention and forced treatment of people with disabilities, Human Rights Watch said today. The body in charge of developing the standards, the Council of Europe’s Committee on Bioethics (DH-BIO), consisting of experts from each member state, is to meet on November 21, 2018 in Strasbourg.

The new standards are being developed as a draft Additional Protocol to the Oviedo Convention on Bioethics, a Council of Europe convention that regulates human rights in the framework of biology and medicine. The Additional Protocol aims to provide a framework for involuntary hospitalization and treatment of people with so-called “mental disorder” in Europe. The Council of Europe is an inter-governmental human rights organization consisting of 47 member countries, including the 28 European Union states.  

“The Council of Europe prides itself in promoting the highest human rights standards, but the draft Additional Protocol to the Oviedo Convention goes against decades of hard-fought progress towards equal rights for people with disabilities.” said Lea Labaki, of the Disability Rights Division at Human Rights Watch. “European governments should publicly oppose the protocol and stop its further development.”

The UN Convention on the Rights of Persons with Disabilities (CRPD), which 46 out of 47 Council of Europe member states have ratified, guarantees people with disabilities, including people with psychosocial disabilities, or mental health conditions, equal rights to liberty and health care based on informed consent. The draft Additional Protocol risks undermining the human rights protections guaranteed in the CRPD and could lead to serious violations of the rights of people with disabilities, Human Rights Watch said.

Beginning in September, Human Rights Watch sent letters to Council of Europe member countries and key Council of Europe bodies calling on them to oppose the Additional Protocol and insist on its withdrawal. Six countries responded, all saying that they are considering their position.

Organizations representing people with disabilities, the UN Committee on the Rights of Persons with Disabilities, the UN special rapporteurs on health and disability and the Council of Europe’s own Parliamentary Assembly and Commissioner for Human Rights have called for withdrawing the draft Additional Protocol. Bulgaria, Portugal and the former Yugoslav Republic of Macedonia have publicly opposed it.

Involuntary detention on grounds of disability and particularly involuntary treatment of people with psychosocial disabilities inherently violates the rights of those subjected to them, including non-discrimination, liberty and security of the person, and the right to health. Such treatment may also violate the prohibition on torture and inhuman or degrading treatment.

Protection from discrimination, unlawful detention, and ill-treatment as well as the right to health are also established in the European Convention on Human Rights (ECHR).

To address abuses against people with psychosocial disabilities, the Council of Europe should instead encourage its member states to move away from coercive measures and provide them with guidance on rights-respecting alternatives to involuntary placement and treatment based on informed consent. Such alternatives already exist in numerous countries and can grow through information exchange and the sharing of good practices between countries.

“By creating a framework for involuntary placement and forced treatment, the Additional Protocol undermines the fundamental rights and dignity of people with disabilities,” Labaki said. “Council of Europe members have a chance to stop this dangerous trajectory and instead lead on promoting the rights of people with disabilities with alternatives to force and coercion.”

Posted: January 1, 1970, 12:00 am

(Washington, DC, October 23, 2018) – A leading organization promoting the rights of older people awarded Human Rights Watch its annual Public Service Award on October 22, 2018.

The National Consumer Voice for Quality Long-Term Care presents the award to an individual or organization whose work has expanded coverage and public understanding of long-term care for older people. The award was presented in recognition of Human Rights Watch’s 2018 report “‘They Want Docile’: How Nursing Homes in the United States Overmedicate People with Dementia.” The report estimates that every week in US nursing facilities, more than 179,000 people, most of them older and living with dementia, are given antipsychotic drugs without a diagnosis for which their use is approved. In many cases, nursing facilities use these drugs without obtaining or even seeking informed consent.

“We are honored to receive Consumer Voice’s recognition for this work,” said Bethany Brown, researcher on older people’s rights at Human Rights Watch. “We are proud of our partnership with them and with other dedicated advocates around the country to promote equality and dignity for older people living in nursing facilities.”

Human Rights Watch visited 109 nursing homes in six states and interviewed 300 people living in facilities, their families, staff, government officials, and others, and analyzed publicly available data. Human Rights Watch found that nursing homes routinely give antipsychotic drugs to residents with dementia to control their behavior. Regulations prohibit this misuse of drugs as “chemical restraints.” This abusive practice remains widespread even though the use of antipsychotics on older people with dementia is associated with a nearly doubled risk of death.

Using antipsychotic medications as a “chemical restraint” – for the convenience of staff or to discipline residents – violates US federal regulations and may amount to cruel, inhuman, or degrading treatment under international human rights law. Using the drugs without adequate indication for use or appropriate monitoring is also barred under federal standards.

Human Rights Watch recommended that national government and state agencies should strengthen their enforcement of federal regulations regarding antipsychotic drugs. Residents and their families should be told they have the right to be informed of their treatment alternatives and their right to refuse. The government should ensure that nursing homes employ enough staff to provide adequate care.

“Human Rights Watch research and reporting sparked a greater understanding of some of the risks to older people in nursing homes in the United States,” said Lori Smetanka, executive director of the Consumer Voice. “With this award, we recognize this important contribution to public awareness and encourage government and state agencies to ensure all older people have the right to choose and refuse treatment for themselves.”

Video

Video: Oversedation in Nursing Homes across the United States

Nursing homes across the United States routinely give antipsychotic drugs to residents with dementia to control their behavior, despite regulatory prohibitions on this misuse of drugs as “chemical restraints.” This abusive practice remains widespread even though the use of antipsychotics is associated with a nearly doubled risk of death in older people with dementia. 

Posted: January 1, 1970, 12:00 am

People with disabilities, artists, and activists gather at a rock concert in Pavlovsk Russia, June 2018.

© 2018 Andrea Mazzarino

A new Russian film, “Temporary Difficulties,” features a character named Sasha, born with cerebral palsy. A doctor tells his parents, “You can give him away and no one will judge you for it.” Although the film takes place during the Soviet era, it paints a picture familiar to millions of Russians today – a couple struggling to raise a child with a disability, without social support, and in the face of pessimism in Russia’s medical community.

Sasha’s parents do not give him away. His mother accepts him for who he is, a person with a disability who has a talent for math, loves music, and is courageous. She tries to get him support, like a donated wheelchair and physical therapy. But reflecting the social stigma surrounding them, Sasha’s father tries to turn him into a “real man” who can move like everyone else. At one point in the film, he abandons Sasha in a forest without a wheelchair or crutches, making him crawl back home.

By the film’s end, Sasha is living in contemporary Russia, having magicked away his disability. He walks like others and is successful and married. The film’s message is cruel and warped: the only way to find acceptance is to will away your disability.

In today’s Russia, some 13 million people live with disabilities. And unlike the fictional Sasha, wishing away their disability is neither possible nor necessary to find acceptance. With the help of more accessible infrastructure and efforts by independent groups to support inclusive health care, schools, workplaces, and recreation, many have begun to rightfully live fuller lives.

Recently I went to a rock concert outside St. Petersburg, attended by residents of local orphanages and adult institutions for people with disabilities. Most people there had cerebral palsy, down syndrome, or limited mobility, or were blind or deaf. They were there with friends and supporters from local nongovernmental organizations. Everyone danced together, without self-consciousness or shame.

It is time for the Russian government to support more efforts toward inclusion, and for more film makers and other artists, as well as journalists, to embrace a rights-respecting vision for all people in Russia. That way millions of children with disabilities can look around on city streets or on television screens and see themselves as they are, not as some in the government and the media may still, even in 2018, suggest they should be.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Restraints on a bed in a seclusion room for children in Lopača Psychiatric Hospital, in southwest Croatia. 

© 2014 Emina Ćerimović/Human Rights Watch
(Brussels) – Croatia’s government should end the confinement of children and adults in institutions, five disabled people’s and human rights organizations said today in a letter to Prime Minister Andrej Plenković. Despite some initial progress, the process of moving people out of institutions and into community-based living has stalled, the groups said.

Based on government figures for 2017, more than 7,800 adults and children with disabilities live in state-run institutions. More than 2,000 others live in privately run but state-funded institutions. These include smaller institutions called family homes, which house up to 20 people with intellectual or psychosocial disabilities, or mental health conditions. It is unclear how many others live in long-term care in psychiatric hospitals without their consent.

“The Croatian government should follow through on its promises to respect the rights of everyone who has a disability to live independently and make their own choices,” said Emina Ćerimović, senior disability rights researcher at Human Rights Watch. “The government helped make this a reality for hundreds of people and should build on this experience for thousands of others.”

According to official data, between 2011 and 2016, the government provided support for approximately 700 people to move out of state-run institutions and into organized housing in the community.

The groups sending the letter are Inclusion Europe, the European Network on Independent Living, the Centre for Peace Studies Croatia, Human Rights House Zagreb, and Human Rights Watch.

The Croatian government should make a clear plan to phase out institutions, the groups said. The government should also develop services in the community, so that children with disabilities can grow up in families and that people with disabilities can live independently, with adequate support.

“The Croatian government needs to move more quickly to meet its obligations under the international disability rights treaty, which it ratified a decade ago,” said Human Rights House Zagreb’s Ivan Novosel. “This includes removing all legal and societal barriers that prevent people with disabilities from taking an active and full part in society.” 

The government’s figures show that as of April 2018, more than 2,455 adults with disabilities were living in foster care. On May 21, the government published a draft Law on Foster Care that would give priority to placing adults with disabilities in the foster care program, including without their consent. Foster care cannot be considered independent living in community for adults as required by the disability rights treaty, the organizations said.

Both the United Nations Committee on the Rights of People With Disabilities and Croatia’s Ombudswoman for Persons with Disabilities have criticized placing adults in foster care.

“Under the international disability rights treaty, Croatia must respect the right of all people with disabilities to live independently in the community, regardless of their impairment, support needs, or age,” said Ines Bulic Cojocariu, deputy director at the European Network on Independent Living. “The government should develop and adequately fund community-based services. Instead, the government continues to place adults with disabilities in institutions and foster families against their will.”

People with psychosocial disabilities in psychiatric hospitals and those in foster care remain excluded from the government’s deinstitutionalization efforts.

In an April meeting with Human Rights Watch, the Social Policy Ministry promised to adopt a new plan to support community-based living for people with disabilities, including those in state-run institutions, private institutions, and family homes. In a subsequent letter to Human Rights Watch, however, the ministry said that people with disabilities who need long-term and intensive care will remain in institutions.

Many people with intellectual or psychosocial disabilities end up in institutions or foster care because they are denied legal capacity or the right to make basic decisions for themselves. A guardian makes some or all decisions for them. About 18,000 people with intellectual or psychosocial disabilities are under some form of guardianship in Croatia.

In June 2014, the Croatian Parliament adopted a new Family Act, which abolished full guardianship. It required courts to review all previous decisions on deprivation of legal capacity with the aim of restoring partial or full legal capacity to those previously stripped of it by January 2020. Since then, courts have reviewed only 1,179 cases, restoring full legal capacity to just 95 people and partial legal capacity to 273. Restoring partial legal capacity means a court can specify what decisions the person is allowed to make independently and those that a guardian will continue to make, such as for living arrangements and health care. 

“Guardianship and other forms of restricting the right to make decisions are inconsistent with Croatia’s human rights obligations,” said Jyrki Pinomaa, president of Inclusion Europe. “Croatia should be restoring legal capacity to people under guardianship and implementing supported decision-making systems that respect the autonomy, will, and preferences of each person.”

The Convention on the Rights of Persons with Disabilities guarantees the right of everyone with a disability to live independently and to be included in the community, regardless of their disability, wither they have multiple disabilities, or whether they need a high level of support. The freedom for individuals to make decisions and control their lives is essential to living independently, the organizations said. In December 2017, the Council of the European Union called on EU governments to ensure that everyone has the right to live independently within their community and to play an active part in society.

“Croatia should mark the 10th anniversary since ratifying the disability rights treaty by reforming laws and policies to meet its obligation under the treaty, including to ensure the right of all persons with disabilities to live in the community and make their own decisions on where and how they want to live,” said Cvijeta Senta of the Centre for Peace Studies.

Posted: January 1, 1970, 12:00 am