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

People take part in the 2018 Women's March rally in Jakarta on March 3, 2018. The participants were demonstrating for equal rights and an end to violence against women.

© 2018 BAY ISMOYO/AFP/Getty Images
(Jakarta) – Indonesian President Joko “Jokowi” Widodo’s administration took few steps in 2018 to protect the rights of marginalized groups in Indonesia, Human Rights Watch said today in its World Report 2019.

In August 2018, Jokowi issued a plea for religious tolerance in the context of continuing harassment and discrimination against religious and gender minorities. But authorities still arrest and prosecute people under the blasphemy law, and courts sentenced six to prison in 2018. Lesbian, gay, bisexual, and transgender people in Indonesia have faced increasingly violent, intimidating, and humiliating police raids that violate their rights to privacy.

“President Jokowi chose not to spend political capital by undoing discriminatory regulations or protecting minorities from abuse,” said Elaine Pearson. “It’s not only increasing the risks among marginalized groups but encouraging Islamist militants.”

President Jokowi chose not to spend political capital by undoing discriminatory regulations or protecting minorities from abuse.

Elaine Pearson

Australia Director

In the 674-page World Report 2019, its 29th edition, Human Rights Watch reviewed human rights practices in more than 100 countries. In his introductory essay, Executive Director Kenneth Roth says that the populists spreading hatred and intolerance in many countries are spawning a resistance. New alliances of rights-respecting governments, often prompted and joined by civic groups and the public, are raising the cost of autocratic excess. Their successes illustrate the possibility of defending human rights – indeed, the responsibility to do so – even in darker times.

Indonesia’s Commission on Violence against Women (Komnas Perampuan) reported that hundreds of discriminatory national and local regulations are harming women. They include local laws compelling women and girls to wear the jilbab, or headscarf, in schools, government offices, and public spaces.

The Jokowi administration failed to lift restrictions on foreign journalists from visiting Papua and West Papua provinces, and Indonesian journalists face controls and surveillance there. This hindered efforts to report on an attack by Papuan militants in December that killed at least 17 people.

The Jokowi government took some positive steps in addressing land-grabbing to curb dispossession. In February, with World Bank support, Jokowi initiated a program to register all land in Indonesia, including disputed areas, by 2025. He announced a moratorium on oil palm plantations, which are linked to deforestation, climate change, and abuses against indigenous peoples, instructing his ministries to stop issuing new plantation permits on state forests until 2021.

Many indigenous and peasant rights groups contend that moratoriums and land certification alone are insufficient to resolve land disputes. In 2017, the Agrarian Reform Consortium documented 659 land-related conflicts, affecting more than 650,000 households.

The Indonesian government has taken promising steps to end shackling of people with mental health conditions, reducing the number  who are shackled or locked up in confined spaces from nearly 18,800, the last reported figure, to 12,800 in July, according to government data.

“Some progress on land rights and disability rights is encouraging, but President Jokowi should redouble his efforts to protect the rights of all Indonesians at risk,” Pearson said.

Posted: January 1, 1970, 12:00 am

Older woman leaving a community center with programs for older people in East London. 

© 2018 Stephanie Hancock for Human Rights Watch
(London) – Older people in England are at risk of not getting adequate assistance to live independent, dignified lives due to uneven assessments for social services, Human Rights Watch said in a report released today. In doing so, the United Kingdom government risks failing to secure older persons’ rights to health, and to live in the community.

For the 35-page report, “Unmet Needs: Improper Social Care Assessments for Older People in England,” Human Rights Watch spoke with older people and their relatives in 12 cities and towns across England. Some said that assessors appeared not to understand their disabilities and support needs. In other cases, before beginning an assessment, assessors announced that services would be cut regardless of an individual’s actual need.  And in some cases services were denied or cut significantly, affecting older people’s health and wellbeing. 

“Older people don’t always get fair assessments of the support they need to live dignified, independent lives,” said Bethany Brown, researcher on older people’s rights at Human Rights Watch. “Older people’s health and wellbeing can be harmed if they don’t get the services they’re entitled to.”

Human Rights Watch interviewed 104 people, including 27 people between the ages of 58 and 94 and 20 family caregivers between September 2017 and November 2018. Human Rights Watch focused on England, as each nation in the United Kingdom has its own social care system.

According to the UK’s independent government-established statistical service, the number of people in England age 65 and over is projected to increase by over 20 percent from 2014 to 2024.

Under the Care Act of 2014, anyone who meets financial and needs criteria is entitled to government-supported services known as social care. Services can include in-home assistance such as for preparing meals, dressing, and bathing.

The UK’s Local Government and Social Care Ombudsman’s 2018 annual report on complaints found a 140 percent increase in social care complaints since 2010. This increase indicates serious concerns with assessments and oversight, Human Rights Watch said.

Witness: “If We’re Experiencing It, So Is Everyone Else”

Witness: “If We’re Experiencing It, So Is Everyone Else”

Farhaz’s family knew something was wrong but didn’t know what. His dementia is severe. Social care to support older people like Farhaz is increasingly under threat from official assessments that can be rushed, incomplete, or inaccurate. Farhaz's family tells Human Rights Watch about their fight to get their father the care he so desperately needs. 

Day-to-day responsibility for providing social care services in England rests primarily with local authorities. Although social care assessments often have significant impact on older people’s health, wellbeing, and independence, no central government agency monitors the assessments. Oversight is left to the local authorities delivering the services. 

While some people interviewed were able to successfully bring an appeal, their services were reduced before an appeal was decided.  Some older people faced physical, psychological, and financial hardships as a result.

Mary, 76, lives in a small town near London, and has care needs. Although she has difficulty gripping and has used a walker for many years, in 2016, an assessor cut her services and falsely reported that she had carried a heavy tray across her kitchen during the assessor’s visit. Although she successfully challenged the inaccurate assessment, the appeals took a year and led to the loss of her caregiver of many years. “After the start of this review, [she] was so uncertain as to whether she would have a job at the end of the review that she gave her notice,” she said.

Social care is funded by a mix of local taxes -- notably council tax -- and general central government funding. According to the UK National Audit Office, an official agency monitoring public spending, central government funding for local governments to deliver social care and other services fell by almost half between 2010-11 and 2017-18. The cuts are part of national austerity measures to reduce spending and increase taxes following the 2008 global financial crisis.

The UK government has obligations under domestic and international law to ensure the rights of older people to live independently in the community, to health, and to private and family life, Human Rights Watch said. 

The UK government should ensure that older people receive the support they need and are entitled to by regularly monitoring social care assessments to ensure accuracy and fairness. Authorities should also ensure that people continue to receive services during complaints and appeals processes. 

“Many older people in England desperately need these services and have no alternatives, so serious cuts to social services funding and an improper assessment can cause tangible risks to their health and wellbeing,” Brown said. “Oversight is a crucial part of a properly functioning system, and the UK government should make sure that local authorities consistently conduct fair and accurate assessments and deliver appropriate services.”

Posted: January 1, 1970, 12:00 am

A Honduran migrant explains to Human Rights Watch research Carlos Rios-Espinosa the difficulties he has in making use of the bathrooms in El Barretal, Tijuana, Mexico.

© 2018 Luis Rodríguez Martinez/Human Rights Watch
In order to use the bathroom in the Tijuana migrant shelter, I had to be carried up a flight of stairs. Living in Latin America with a disability has never been a simple task; daily activities can be extremely difficult due to the lack of accessibility and specific supports for living independently. As a wheelchair user living in Mexico City, I had to be carried down two big stairs to be able to board my plane to get from the capital to Tijuana.

But things are much worse for the nine people with disabilities I met who traveled from different parts of Central America and Mexico to the US border as part of the migrant caravans. In November, their journey north in search of a life without violence and discrimination had stopped at El Barretal shelter in Tijuana, a town by the US border. Those who spoke with me were among the 12 migrants with disabilities registered by the Baja California state Human Rights Commission and other agencies. But the number is surely an understatement; people who may have less visible disabilities, such as developmental disabilities like autism or psychosocial disabilities (mental health conditions), were not identified.

When I asked about migrants with disabilities, many representatives from international humanitarian agencies reacted with surprise and immediately acknowledged the need to more actively search for them.

Human Rights Watch researcher Carlos Rios-Espinosa interviews a Central American migrant with a disability outside the Benito Juárez stadium in Tijuana, Mexico. 

© 2018 Luis Rodríguez Martinez/Human Rights Watch

Violence and discrimination against people with disabilities in Central America

The stories of people with disabilities I met in the migrant caravan, although diverse, share common features. Most significant among these are experiences of violence and discrimination in the countries they’ve fled. But people with disabilities often experience other types of violence and discrimination that in some cases are intimately tied to their condition.

According to the Committee on the Rights of People with Disabilities, a UN expert body that examines whether states are upholding the rights of people with disabilities, in Honduras, people with disabilities are threatened and extorted by the Maras and other criminal gangs. In the case of Guatemala, the Committee found that discrimination against people with disabilities in Guatemala is systematic and many of them are frequently victims of exploitation, violence, and abuse and that there are no measures for their protection, recovery, and reparation.

María and Ximena (not their real names) are two deaf women who arrived in Tijuana from Honduras. Like many other members of the caravans, they came to Tijuana by asking for bus rides and sometimes walking part of the way. Maria could communicate easily in sign language. A special education teacher from Guatemala, who also fled Guatemala as part of the caravan, helps interpret for the two women.

“I came with the caravan because there is no work in my country, and there is a lot of discrimination against deaf people, like me, in Honduras,” María said. “I worked in a maquiladora making lingerie, but when they realized that I was deaf, they began to pay me less money. They paid me 1,000 lempiras (US$41) a week, while the others earned up to three times more.” Also, her co-workers bullied her. “Everyone closed the door to me,” she said. “One day, I proposed to my friend Ximena that we leave with the caravan, and since then we have been on the road.”

Ximena's story was different and involves domestic violence. In sign language she told me, “My husband, who is also deaf, once hit my head against the wall.” She had to leave her five-year-old daughter behind. Unlike Maria, Ximena does not use sign language very well and had much less access to education. She cannot read and write. “If I go back to Honduras, my husband is going to kill me,” she said.

I also met Daniel Humberto Folgar Navas, a 49-year-old man from Guatemala with osteogenesis imperfecta, a condition that causes his bones to break easily. “I have fractured my bones nine times, and I live with unbearably intense pain,” he told me. “In Guatemala, I do not have any disability benefits or social security, and although I am a school teacher, the only work I have been able to obtain is selling plastic bags in the market.”

Rafael Peralta has clubfoot. He left his country because he said that “as a disabled person, I have no hope; in Honduras disabled people don’t matter at all.”

He also experienced discrimination at work. “I worked in the fields doing agriculture, but I was paid just 400 lempiras (US$16) per week, while people without disabilities earn 1,200 (US$49) doing the same job. They made fun of me because of my physical disability.”

Traveling 3,000 miles with a disability

Getting to Tijuana from Honduras, Guatemala, or El Salvador means traveling more than 3,000 miles and passing through different cities and towns. It’s a difficult endeavor for anyone. Most people with disabilities I interviewed said the people they met along the way were generally supportive, although social attitudes towards their disabilities sometimes placed them at risk, and they had experienced some dangerous and difficult moments.

Ximena and Maria both had guns pointed at them because they could not hear warnings. “Once, going through Guatemala, we had to relieve ourselves. We tried to do it in an open field because there were no bathrooms. Some men pointed their guns at us because we didn’t pay attention to their warnings to stay away…. When they understood that we were deaf, they let us go.”

For Rafael, there were moments of real anxiety. He told me, “Due to my clubfoot, I walk slower and to keep the pace with others in the caravan, I could not stop to drink water very often. In Chiapas, Mexico, I became dehydrated and my stomach began to hurt intensely, I could hardly urinate.” The walk demanded a lot of effort from Rafael, who walked with a cane. “Fortunately, in Oaxaca the Red Cross gave me some crutches and with those I continued my trip. They also gave me a wheelchair that I now use.”

In Tijuana, I had the opportunity to meet an older person with a disability who had been victimized by criminal gangs on the road. Gustavo Martinez, 68, who walks with a cane due to a knee injury, fled violence in his local community of San Pedro Sula, Honduras, together with his 25-year-old granddaughter. Unlike other migrants in the caravan, Martínez managed to save some money before setting out to pay for bus tickets. He said when they got off the train at the wrong stop, a gang of men with assault weapons stopped them. “They hung me by my ankles, and they pulled out one of my toenails, trying to force me tell them if I had relatives in the United States. They intended to extort money from us, but nobody said anything, and they released us.”

Living conditions in shelters for migrants

Life in shelters in Tijuana is harsh for people with disabilities. When the migrant caravan first arrived, people were placed in a sports stadium called Benito Juarez. Heavy rains in November flooded the camp and the local authorities moved people to an area called El Barretal. Although most of the Central American migrants from the caravans are there now, about 300 people remained near Benito Juarez until December 12, 2018. Juan Carlos Flores, member of Baja California Human Rights Commission, said that they refused to move to El Barretal due to its location, a 45-minute drive from the US border crossing. They wanted to stay near the border in case their names were called for the asylum petition.

In Benito Juarez, I interviewed two people with physical disabilities: Ramiro Carrera and Herbert Ramos, both from Guatemala. Ramiro has difficulty walking and Herbert has no mobility in his right arm. “In this place there is no bathroom and we have to use one that is two streets away from here. We are charged five pesos (26 US cents) each time we use it,” said Herbert. For Ramiro that meant getting pushed in his wheelchair to the bathroom by someone.

While El Barretal provides migrants with slightly better facilities, people with disabilities still face numerous challenges. “I cannot bathe every day because it's very difficult, I do it outside, but the bathroom costs 25 Mexican pesos (US$ 1.24) and it's difficult to get money,” Daniel Folgar, who uses crutches, said. “Although the authorities serve food twice a day, people have to stand a long time in line,” Folgar explained. “With crutches it's hard, I cannot carry the plate of food they give me. Although I get priority and many times others bring me food here, but not always. If I stand in line, I risk getting bumped by others and falling down.”

Rafael Peralta, who also uses crutches, talked about the challenges he faces accessing showers and a toilet. Selling cigarettes in the camp, he manages to earn some money to shower in a neighboring private bathroom from time to time. “It is very difficult to bathe in this place; sometimes I spend four or five days without bathing, until I manage to save some money.”

When Rafael took me to El Barretal showers and bathrooms, I was able to see the difficulties he was talking about. The latrines were dirty and had a horrible stench. There were puddles of water in the entrances. “If I try to enter the latrine with the crutches I can slip; that's why I prefer to use a plastic can to go to the bathroom,” said Rafael. Entering with a wheelchair would indeed be impossible.

The United States government might take a long time to process asylum petitions that are still pending. More so because of the US government’s announcement on December 20 that “individuals arriving in the United States from Mexico – illegally or without proper documentation – will be returned to Mexico for the duration of their immigration proceedings.” Before the arrival of the caravans, there was already a significant backlog managing the requests. For the time being, the Mexican government should implement a specific program to meet the requirements of people with disabilities who are in El Barretal. That could include the provision of an accessible latrine, and the appointment of support staff so that these people can perform personal hygiene and are provided with food in a safe manner.

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

Dr Akwasi Osei, CEO of Ghana’s Mental Health Authority, Medi Ssengooba, and Shantha Rau Barriga.

© Private

With great sadness we share the news that Medi Ssengooba, a dear friend, partner, and colleague at Human Rights Watch, passed away last week after a short illness.

Medi was a strong advocate, a sharp lawyer, and a kind and gentle man who shattered the notion that disability meant inability. He joined Human Rights Watch as the 2011-2012 Finburg Fellow and led a team investigating and writing a seminal report, “Like A Death Sentence,” on shackling and other abuses against people with psychosocial disabilities in Ghana. During our research mission together to Ghana, Medi and his wheelchair had to be carried over the rocky terrain to reach the gates of the prayer camp where people were held in chains, but he was determined to get in and document their stories. The 2012 report and related video, featuring Medi, prompted Ghanaian officials to adopt many of its recommendations.

Medi went on to work for the Disability Rights Fund, managing their grants to Ghana, so we continued to work together to push for change. In a meeting with Medi in April 2017, the chief executive of Ghana’s Mental Health Authority, Dr. Akwasi Osei, agreed to ban shackling and to release people in chains from key prayer camps that we had identified, a promise fulfilled later that year.

He also changed the environment closer to home, persuading Human Rights Watch to install remote-controlled doors more usable to someone in a wheelchair, and advised us on how to renovate our New York office to make it more accessible. Life in New York City can be particularly challenging when you’re in a wheelchair, but Medi faced it all with unshakable good humor.

Medi persevered throughout his life. He was one of the first people with disabilities to graduate from Makerere Law School in Uganda and went on to get his LLM from American University in Washington, DC, with a fellowship from the Ford Foundation. He also co-founded the legal aid organization, Legal Action for Persons with Disabilities (LAPD), in Uganda.

Medi touched many colleagues with his optimism, warmth and kindness.

Our thoughts go out to Medi’s family, the disability community (particularly in his native Uganda), and the many who had the privilege of calling him a friend.

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

Gathering on Grand Place in Brussels on Human Rights Day, December 10, 2018.

© 2018 Roksana Nowak/Human Right Watch
As night fell on December 10, people gathered in Brussels’ Grand-Place to celebrate the seventieth anniversary of the Universal Declaration of Human Rights. Around the Christmas tree in the center, the square had been illuminated blue in support of human rights.

The declaration was read out loud, and the audience occasionally burst into applause.

In the middle of the crowd there was a child looking up toward the City Hall tower from his wheelchair. I wondered what was going on in his mind as the declaration was read out.

The Universal Declaration enshrines rights that many of us take for granted: the right to education, to liberty, to be recognized as a person before the law, to be free from torture and cruel, inhuman, or degrading treatment. But too often around the world, people with disabilities continue to be denied the chance to go to school, or are confined to institutions, secluded, and restrained.

Although often adopted under the false belief they are needed for protection or care, some laws and policies of countries which have otherwise made strides in human rights, still discriminate against people with disabilities.

For example, the Council of Europe has developed a draft Additional Protocol to the Oviedo Convention. While recognizing that the rights of people with disabilities are often violated through detention and forced treatment, rather than seek to end such practices, the treaty proposes a framework for them that will perpetuate discrimination against people with disabilities.

Around the world, people with disabilities are stripped of their rights and their dignity.

In Brazil, thousands of people with disabilities are confined to institutions for decades, denied the chance to live in the community. In one facility, Human Rights Watch met a 70-year-old man with an intellectual disability who had been living there since he was 5 years old.

In Lebanon, young Radwan recounted how school after school told him, “We don’t take children in wheelchairs.”

Human Rights Watch’s newest report details how European Schools, which cater mainly for children of EU employees, are failing students with disabilities. Louise, a 15-year-old who has dyslexia said: “Those who are a little defective, [the schools] do everything they can to reject them.”

How long will Louise, that boy in the crowd, and millions more, have to wait for human rights to become truly universal?

Author: Human Rights Watch
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

Video

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

 

Summary

“My son knows every car brand. He has astonishing geographical memory. He knows two Mozart operas by heart. But special gifts like this are not regarded in schools, because they are not useful. If you are not among the 95 percent of children that develop normally in terms of reading, writing, calculating, you have a massive problem.”
—Maria, the mother of a boy with an intellectual disability, October 2018

Maria works for a European Union institution. Her son Jonas is nine years old and has an intellectual disability. When he was four, she tried to enroll him in a European School, which children of EU staff have a right to attend for free. Their application was rejected three times. Jonas now attends a special school for children with intellectual disabilities.

European Schools, a network of 13 intergovernmental schools primarily teaching children of EU employees, do not do enough to accommodate the needs of children with disabilities. While the schools are paying increasing attention to inclusion, Human Rights Watch found that children with disabilities continued to be rejected, pressured into changing schools, or not provided with appropriate accommodations and support to allow them to learn and thrive in an inclusive environment.

European Schools are governed by the 28 EU member states and the European Commission. The EU and all of its member states have ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which guarantees children with disabilities the right to inclusive education.

Based on interviews with 27 people between September and November 2018, this report documents the cases of 12 children and one young adult with a range of disabilities and found that despite states’ obligations under the convention, European Schools allow the exclusion of children on the basis of disability. 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.”

These cases took place in five European Schools, but shed light on a number of structural issues in the European School system which also affect students in other European Schools.

Nine parents interviewed by Human Rights Watch reported feeling pressured by school officials to remove their child from the school. In some cases, parents told us that they experienced harassment, with school officials repeatedly calling them in for meetings to hear complaints about their child’s challenging behavior or poor academic performance.

Claire, the mother a 16-year-old boy with attention deficit hyperactivity disorder (ADHD), explained: “There are two situations: either the children are thrown out, often because they are failing at school. Or they are isolated, not supported, until they decide to go themselves. It's ‘sink or swim’.” Claire, who ended up removing her son from the European School in 2015, said all but one of the children who were receiving educational support in her son’s class dropped out.

Louise, a 15-year-old girl who has dyslexia, also 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 CRPD, children with disabilities have a right to individualized support measures and reasonable accommodations in school, including adapted teaching methods, material and program, the provision of assistive technology, and alternative examination formats. According to parents, such accommodations were not systematic and depended on the willingness of school staff.

“It wouldn't take a lot of effort,” said Claire. “These are marginal adjustments, not rocket science.”

Also, 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 with the program and the school would be “limited to a sort of daycare.”

Currently, around 27,000 pupils are educated at the 13 European Schools in Belgium, Luxembourg, Germany, Spain, the Netherlands, and Italy in 20 official EU languages. While there is no data on the number of pupils with disabilities, nearly four percent of the school population receive intensive support, targeting children who are determined by an expert assessment as having “special educational needs,” a large number of which are children with disabilities.

Depending on the language skills of the children, and the availability of alternative international and inclusive schools in the national school systems, children with disabilities who are rejected from European Schools may find themselves with limited options for schooling.

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. Based on interviews with European Commission officials, Human Right Watch found that the European Commission, which has the largest staff of all EU institutions, is currently providing such funding to around 70 children, for a total budget over €1.5 million. Instead of investing in accommodating the needs of children with disabilities in European Schools, the EU is spending significant funds on private school education for these children.

Most parents interviewed for this report recognized that some teachers and assistants were doing their utmost to help their child and that attitudes were evolving positively. For example, one boy with a disability experienced a more inclusive environment after a new director and support coordinator were appointed to his school, after four years described by his mother as “pure hell” during which she was continuously pressured to remove him.

The situation of Adrian, a 17-year-old boy with autism, also dramatically improved after he moved from one European School to another. His first school frequently punished him for behavior linked to this disability; in the second one he was met with understanding and openness.

Although European School staff make adjustments, it should not depend on their good will whether to accommodate or not the needs of children with disabilities. European Schools should make a commitment to inclusive education in policy and practice, and back it up with adequate resources.

The Board of Governors of European Schools should adopt a policy on inclusive education, develop teacher training and introduce flexibility in the curriculum. The European Commission, which provides more than half of the European Schools’ budget, should lead the process and ensure its funding contributes to an inclusive system.

 

Methodology

This report is based on research conducted by Human Rights Watch between September 2018 and November 2018, in close collaboration with the European Disability Forum, an independent nongovernmental organization based in Brussels that represents Europeans with disabilities. The European Disability Forum provided expertise and advice.

Human Rights Watch documented the cases of 12 children and one young adult with a range of disabilities, who were enrolled in five European Schools (four in Brussels and one in Luxembourg), or whose enrollment application was refused. The cases investigated nonetheless shed light on a number of structural issues in the European School system which also affect students in other European Schools.

Human Rights Watch interviewed a total of 27 people in Brussels and Luxembourg for the report, 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. The interviews were conducted in English and French, either in person at homes, schools, public spaces or offices, or through video and phone calls. All cases took place since 2013. Out of the 13 students whose cases were documented, 12 were children of EU institutions’ employees.

Most children and parents are identified by pseudonyms in order to protect their privacy and confidentiality, unless they requested that their identity be revealed.

 

Background

European Schools are intergovernmental schools primarily intended for children of employees of European institutions. They are considered public institutions, governed by an international convention and controlled jointly by the governments of EU member states and the European Commission.[1]

Free enrollment of their children in European Schools is part of EU staff’s employee benefits. Currently, more than 80 percent of European Schools’ pupils are children of EU staff. The European Commission provides more than half of the European Schools’ budget.[2]

European Schools provide instruction in 20 EU languages, allowing children to study in their mother tongue. They deliver the European Baccalaureate, which is recognized across the EU.

All EU member states as well as the EU itself have ratified the CRPD. As Andreas Beckmann, the deputy secretary-general of the European Schools, said: “The first step is to acknowledge [European Schools] are bound by the CRPD.”[3]

In 2015, the UN Committee on the Rights of Persons with Disabilities, which monitors implementation of the international disability convention, expressed concern “that not all students with disabilities receive the reasonable accommodation needed to enjoy their right to inclusive quality education in European schools in line with the Convention, and that the schools do not comply with the non-rejection clause.”[4] This clause requires governments to ensure people with disabilities are not excluded from the general education system on the basis of disability.[5]

As follow-up to the UN Committee report, the European Schools’ Educational Support Policy Group prepared a report on inclusive education. In parallel, the Joint Board of Inspectors carried out an evaluation of the schools’ provision of educational support. Both reports are scheduled to be presented at the European Schools Board of Governors December 2018 meeting.

The European Commission, in its Diversity and Gender Equality Report 2018 and Action Plan, announced it will ask for an independent external evaluation to identify and address issues related to educational support in European Schools, in light of the UN Committee’s observations and recommendations.[6]

 

Barriers Facing Children with Disabilities in European Schools

Exclusion and Pressure to Leave the School

The Policy on the Provision of Educational Support allows European Schools to refuse children with disabilities when they determine that the school cannot meet their needs.[7]

In the 2016-2017 school year, nine children left a European School after it declared itself unable to meet their needs, while 40 others “moved to a more suitable school,” according to the latest available statistical report.[8]

Human Rights Watch documented three cases where children with disabilities were excluded but found that in practice, schools more often apply pressure on parents until they themselves remove their children from the school.

In some cases, teachers warned parents that their child would not receive all the support they needed and would experience increasing difficulties. In others, school administration repeatedly urged parents to move their child to a special school, arguing that the European Schools were not inclusive and that their child did not belong there.

Eva, whose son David has multiple disabilities, explained: “They couldn’t do much because they could see he could follow intellectually. They couldn’t throw him out, but they were constantly trying to make me do it, asking me if I really thought it was the best school for him, whether I was thinking of putting him in a local school.”[9]

In seven cases documented by Human Rights Watch, pressure increased when children transitioned to secondary school. Statistics from the school year 2016-2017 indicate that the proportion of children receiving intensive support decreased between the nursery/primary cycles and the secondary cycle.[10]

Even when children with disabilities are thriving, they are pressured into leaving the system. One boy with autism found the support he needed at the European School after a negative experience in the Belgian special education system. “He is progressing to be included in society,” said his mother. “He is starting to relate with others, to communicate, read, do math…”[11]

But it is uncertain if he will be allowed to stay on: “Every time we go for meetings [with the school administration and teachers], they give us the same speech: ‘He is making good progress; however, he can’t go to secondary school because he can’t reach the Bac’ [the European Baccalaureate].”

The school directors and support coordinators interviewed by Human Rights Watch valued inclusion and were eager to offer the best opportunities to children with disabilities. But as a result of having little flexibility in the curriculum, they confirmed that there comes a moment when they feel they have no choice but to recommend to parents to take their child out of the European School[12]: “We try to take their hand and not push them. But sometimes, in the interest of the child, we have to explain to them it’s not doing anybody any good,” Brian Goggins, director of the European School of Brussels I, told Human Rights Watch.[13]

Having to change schools can be incredibly stressful for a child. Marius, a 13-year old boy with learning disabilities, experienced it as “a huge injustice, a tragedy,” according to his mother.[14] Cristian, the father of Antonio, a nine-year-old boy with a learning disability, said his son also reacted badly. He continues to ask in the morning: “Are we going to the new school or the old school today?”[15]

European Schools do not have a standard procedure to assess admission requests for children with disabilities, and do not collect data on the number of requests they reject or the reasons for refusal.

Maria, the mother of Jonas, a nine-year-old boy with an intellectual disability, explained that when she tried to enroll her son three times in 2013 and 2014, they were asked to come to the school for half a day of assessments. By the end of the morning, Jonas, then aged four, was tired and no longer cooperating. His mother described: “My son was left in an empty classroom with nothing to play with, just a pen and paper, but my son doesn’t draw. Outside, there was a football and scooters. Of course, he wanted to go outside to play. Based on that, they decided he can’t stay in a classroom.”[16]

Their application was rejected three times, on the grounds that the school structure was not fit for Jonas, that he would never make it to the European Baccalaureate, and that he was hyperactive and would run out of the classroom.

Maria was unable to find a mainstream Belgian school that would accept her son, despite discrimination on the grounds of disability being prohibited in the Belgian education system.[17] He now attends a special school 30 kilometers away from his home. “Now that he’s in a special school, he will never leave the system,” she said. “I’m very sad my son is in the special education system. There are very limited things you can do after going to a specialized school. Children with disabilities have so much talent, so much would be feasible if they would get the right support.”[18] As a result, Maria is now considering quitting her EU job and going back with her son to their home country.

Inadequate Support and Lack of Systematic Accommodations

Educational support in European Schools is by default focused on the provision of support lessons and one-to-one assistants, regardless of the child’s individual needs. Most of the parents interviewed by Human Rights Watch considered that this response was not adequate for their child.

Instead of a personalized educational response based on their disability, children were often just offered support classes in the subject matters they were failing in. Theo, who grew up near-bilingual in French and English but experienced difficulties in French classes due to his dyslexia, was placed in a remedial program for children who did not speak French.[19]

Parents expressed that giving their child remedial lessons and extra homework was inappropriate as their child was already struggling to manage the existing workload. One mother explained: “If a child has dyslexia, it is not a good idea to give them support classes. What these children need are accommodations [in the classroom].”[20]

While assistants can provide practical support, such as preparing educational material, helping the pupil to use the toilet, and supporting them with behavior, assistants alone do not make the school system inclusive.[21] Four out of the seven parents whose children had an assistant raised concerns with how the assistant functioned with their child.

According to Angèle, Marius’s mother, “the assistant was there to keep him busy, and some teachers felt that it was no longer their job to take care of him.”[22] Marius’s assistant used to take him to work in the corridor, which meant he would miss classes. “I didn't often go inside the classroom,” he added.[23]

Anna, whose son Adrian has Asperger syndrome, said “[the assistant] was there more to help the school than to help my child. She was sitting next to him during all classes, which was making other students and the teacher uncomfortable.”[24]

Another child, Theo, was bullied by his classmates because he had an assistant. “It was marking him out as separate,” his mother explained.[25]

To promote inclusion, assistants should receive training in the specific needs related to different types of disability, and how to support the student with a disability to follow the lesson delivered by the teacher; the teacher is still directly responsible for the child’s learning.

The Policy on the Provision of Educational Support provides for “special arrangements” during tests,[26] but not for reasonable accommodations in the classroom for children with disabilities, as required by the CRPD.[27] According to the parents interviewed by Human Rights Watch, while some teachers provided such accommodations, they were not systematic and depended on the decisions of individual staff.

Claire said teachers refused to take basic steps to accommodate the needs of her son such as communicating homework at the beginning rather than the end of the period.[28] Likewise, Theo had difficulties taking notes because of his dyslexia, but his teachers refused to give him written copies of notes.[29] The mother of Louise also said she had to fight for months for the school to authorize the use of a device to take pictures of the blackboard. According to her, teachers considered accommodations as preferential treatment. [30]

Large class size can be another obstacle for children with disabilities. In European Schools, classes may have up to 30 pupils.[31] The policy does not allow for class size to be reduced based on the fact that one or several pupils have a disability.[32] The European Schools’ Educational Support Policy Group recommends to provide the schools with more autonomy to adapt the thresholds for maximum number of pupils in cases where a class has several pupils receiving intensive support.[33]

Three parents indicated that the school did not buy the assistive equipment their child required. Eva, for example, had to provide the magnifier and special chair that her son needs in class because he has low vision.[34] Cristian said he was advised by his son’s teacher “not to ask for too much,” or else the school would declare it did not have the capacity and ask him to leave.[35]

Negative Attitudes and Harassment

Four parents interviewed by Human Rights Watch faced persistent hostility from the management in two different schools. They described being repeatedly asked to attend meetings to hear complaints about their child.

Eva recalled: “I’m a single mother, already desperate as it is, and I was sitting in a room with 15 people, including the headmaster, psychologist, teacher, assistant, everybody literally attacking me, saying: ‘There is something wrong with your child, what he does is unacceptable, please get a diagnosis.’ All kinds of things that make you feel really bad. They try to make you feel like you’re insane.”[36]

Angèle said the school regularly called her at work, and asked to come on the same day: “I had burnout. It's a form of harassment. They wanted us to leave.”[37]

Hostility was also sometimes directed against the children. Adrian was frequently punished for behaviors linked to his autism. He told Human Rights Watch: “The director and the advisor were focusing on me. I had to go to the principal because of things I did just because I’m special.”

His assistant was tasked with writing reports about his behavior. “Little things such as talking to a classmate during a lesson would be in the assistant’s report that the principal could see,” Adrian said. “I did not enjoy this. It was not a happy time. We as a family were not happy. There was constantly something to do with the school because of me.”[38]

In 2015, the situation escalated, and Adrian faced a disciplinary procedure for his behavior in one class. The disciplinary council excluded him from this class, which was essential to obtaining any certification. That is when his mother finally decided to put him in a different school. “Keeping him in the school was only to delay his execution,” she said.[39]

That same year, in the same school, another child with a disability, Theo, went through a disciplinary procedure for his seemingly harmless behavior with a teacher. For his mother, this was the final blow: “We decided that if this was their attitude towards our son it was not in his best interest to be in the school.”[40]

Adrian is now enrolled in another European School, where the staff’s attitude is dramatically different. “It’s a nice school, I like it much better,” he said. “If there is an incident I go to the advisor, we talk it out, find a solution. They pay attention to people with special needs.”[41]

David, who has multiple disabilities, also experienced negative attitudes under his school’s previous administration. The school once tried to dissuade his mother from letting him join a school trip, even though she had arranged for his father to accompany him.

“The teacher said she was really worried that he would not follow instructions, would have a tantrum and scare other children. But if we talk about scaring children, he is the most scared of all,” his mother told Human Rights Watch. “It was one of the worst things that happened in my life. I am laughing now but I really want to cry.”[42]

Lack of Flexibility in the Curriculum

European Schools offer a single, highly academic curriculum leading to the European Baccalaureate. As Manuel Bordoy, director of the European School of Brussels IV, explained, when it comes to the inclusion of children with disabilities, “the limit is that the system doesn’t deliver other qualifications than the Bac.”[43]

The curriculum leading to the European Baccalaureate does not allow any flexibility to adapt to the needs, potential, and learning style of children with disabilities. Under the Policy on the Provision of Educational Support in the European Schools, “[a] pupil benefiting from a modified curriculum in order to meet his/her needs will be promoted only if he/she meets the expected requirements for his/her study level.… All European Baccalaureate candidates must have followed the full S6 and S7 [the last two years leading to the European Baccalaureate] curriculum in order to qualify for award of the Baccalaureate diploma.”[44]

Children who are not promoted to the next grade may be “progressed” and continue with their class. However, this means that they will leave the European School with no certificate: there exists no alternative to the European Baccalaureate to document the progress achieved by children who have followed an adapted curriculum.

Andreas Beckmann, the deputy secretary-general of the European Schools, recognized this raises a difficult question: “Is it still in [the child’s] best interest if they follow their class for 12 years and end up with nothing in their hands?”[45]

Introducing a new certificate in addition to the European Baccalaureate would require a decision from member states.

Based on interviews with parents and school officials, while a certain level of flexibility is permitted in the primary cycle, assessment and promotion rules are strictly applied in the secondary cycle. “In S4 [year 4 of the secondary school] and beyond, we fully insert the student into the program, we don’t adapt the program or the marks, to see how they fare,” explained one school support coordinator.[46]

This is what made Cristian remove his son Antonio from the school. “We realized there is no individualized program, no pedagogical path for his needs,” Cristian said. “If you are within the frame, it’s okay, but if you go a little bit outside the frame, it’s a disaster. They just close their eyes, thinking that children of civil servants can’t have any problems.”[47]

Standard learning objectives may not be adequate for some children with disabilities, who may require an adapted curriculum.

The fact that European Schools require their pupils to master three different languages can be a serious obstacle for some children, and particularly some children with disabilities. “Just because you are the son of a European civil servant does not mean you are good at languages,” said Claire, who removed her son from the school after seven years.[48]

William said that the time his son Theo, who has dyslexia, spent improving his French spelling was taken away from other subjects, like math and science. According to his father, Theo would likely have serious difficulty passing the European Baccalaureate because of his difficulties in French. William told Human Rights Watch: “It was unfair that he would end up with no qualifications because he cannot put the right accent on a French word.”[49]

Lack of Awareness and Training

Of the 10 parents interviewed by Human Rights Watch whose children were enrolled in a European School, eight said that the school staff lacked sufficient training and awareness about disability.

As most European School teachers are seconded by member states, their level of training on disability and inclusive teaching varies. Micheline Sciberras, support coordinator at the European School of Brussels I, said: “We come from different systems, different philosophies. We have colleagues who come from very selective systems.”[50]

In spite of being bound by the CRPD, many European states do not implement inclusive education in practice. According to the Council of Europe Commissioner for Human Rights: “Many countries still do not regard inclusion of [children with disabilities] as an enforceable obligation for mainstream schools.”[51]

As a result, some teachers arrive at the European School without ever having had a pupil with a disability in their classroom, and with no knowledge or experience as to how to include them and ensure they are learning on an equal basis. “Some teachers would say ‘this is not my job,’” Brian Goggins, director of the European School of Brussels I, told Human Rights Watch.[52] He explained that to address this, support coordinators, who are trained to address diverse educational needs, sensitize their colleagues on inclusive education.

Manuel Bordoy, director of the European School of Brussels IV, also recognized there is a need for better training.[53] Some schools include subjects such as differentiated teaching and educational support in their local in-service training, but there is no system-wide teacher training on inclusive education. Andreas Beckmann, the deputy secretary-general of the European Schools, agreed that European School should develop systematic and comprehensive training tools on this issue.[54]

It is often left to parents to train teachers or arrange to bring in professional expertise to the school. “It was up to me to explain his disability. But I myself am not educated. I also need help to understand my son’s behaviors,” recalled Anna, the mother of Adrian. “My mission was to disseminate information. I printed Wikipedia pages about Asperger in all languages and distributed them to teachers.”[55]

Parents also expressed concern about the lack of qualifications of the staff specially mandated to support children with disabilities, such as support teachers and support assistants. According to the Procedural Document on the Provision of Educational Support in the European Schools, support teachers, whether seconded or locally recruited, will only “preferably” have “qualifications, experience or aptitude for teaching pupils with diverse needs.” [56]

Several parents also highlighted the inadequacy of support assistants’ role. Although they do not have pedagogical training and are not supposed to have teaching tasks, in practice they often do pedagogical work. Daniela, whose 12-year-old son Luca has autism, told Human Rights Watch that her son’s assistant was extremely competent but was treated and remunerated as someone with no university education despite having a post-university degree.[57] The responsibilities of support assistants are not officially recognized, and they are graded in the same category as nursery assistants and ICT technicians.[58]

For Isabel, whose son has attention deficit and a learning disability, assistants are used to fill a gap in the support of children with disabilities.[59]

Limited Alternatives and Private School Tuition Fees

Children with disabilities who are excluded from European Schools or steered out by the lack of adequate support face a dearth of alternative schooling options in a language they can speak. Some parents like Bruno, whose 19-year-old son Simon has ADHD, have no other choice but to send their child to a boarding school in their home country. “It was a difficult decision to take, including for our family life,” he told Human Rights Watch. “He was our last child at home and he’s no longer at home.”[60]

Children who speak the national language of their country of residence can transfer to the national system but may again face barriers to inclusion. The two parents who had tried to enroll their child in mainstream Belgian schools said their repeated applications were invariably turned down. According to UNIA, the Belgian public agency in charge of combatting discrimination, Belgian schools regularly exclude children with disabilities.[61] In 2016, the Council of Europe Commissioner for Human Rights expressed concern that a high number of children with disabilities in Belgium were educated separately from other children in specialized schools.[62] In a landmark ruling in November 2018, a Belgian court for the first time fined a school for refusing to enroll a child with a disability.[63]

Most parents had only one option after their child left the European School: to enroll them in a private international school, where tuition fees can reach more than €50,000 a year. In those cases, staff of EU institutions may apply for co-funding from their employer. Parents interviewed by Human Rights Watch were reimbursed between 40 to 80 percent of school fees, depending on their income.

“It’s not fair that it’s not the total amount. We had no choice,” said Angèle, who had to send her two children to a private school.[64] Maria, who had to enroll her son Jonas in a private nursery school after his admission was rejected by the European School, said: “It’s discriminatory, because without a disability, the child would not need special support. Compared to someone on a Belgian contract, I cannot complain. But compared to other staff members of European institutions… Even if we have good salaries, it can be heavy.”[65]

Comparable data on support for children with disabilities is limited, making comparisons over time and between types of support difficult. Still, the European Commission alone co-funds private school fees for about 70 children, for a total budget over €1.5 million.[66] This represents an average of more than €20,000 per child, while the average budget for educational support within European Schools (for both intensive support as well as general and moderate support) was only around €1,300 per child in the 2016-2017 school year, according to the latest available statistical report.[67]

According to the European Commission’s Diversity and Gender Equality Report 2018 and Action Plan, in 2019 the Commission will start discussing the possibility of fully reimbursing children with disabilities’ tuition fees. [68] While this would alleviate the financial burden for parents, a better approach would be to ensure European Schools are inclusive and children with disabilities no longer need to be enrolled in separate schools.

 

Recommendations

To the Board of Governors of European Schools

  • Adopt a time-bound action plan to address the findings of the Educational Support Policy Group’s report on inclusive education and the Joint Board of Inspectors’ evaluation of the educational support policy.
  • Amend the Policy on the Provision of Educational Support in European School to remove the caveat on inclusive education and ensure all provisions comply with the CRPD.
  • Adopt an inclusive education policy, including a commitment to provide reasonable accommodations to children with disabilities.
  • Develop system-wide teacher training on disability and inclusive education and ensure the qualification of support teachers and support assistants.
  • Provide training to assistants on the support needs associated with different types of disabilities, and on how to offer support to a child in a way that empowers them and ensures their place within the classroom alongside classmates without a disability.
  • Introduce flexibility in the curriculum leading to the European Baccalaureate.
  • In  addition  to  providing  required  accommodations  to  enable  children  with disabilities  to  obtain  the  European  Baccalaureate,  develop  a  certification recognized  by  member  states  for  children  with  disabilities  who  solicit  an alternative curriculum.
  • Accept the recommendation in the Educational Support Policy Group’s report on inclusive education to provide the schools with more autonomy to adapt the thresholds for maximum number of pupils in cases where a class has several pupils receiving intensive support.
  • Appoint a person in charge of inclusive education in the Office of Secretary-General of European Schools.

To the European Commission

  • As main funder of European Schools and body in charge of the EU’s implementation of the CRPD, drive the reform process to make European Schools inclusive of children with disabilities.
  • In the short term, when children with disabilities are not accommodated by European Schools, and have to enroll in other private schools, ensure school fees are fully reimbursed. In the long term, ensure sufficient funding is available for adequate and appropriate support and accommodations in European Schools.

To the European Parliament

  • Monitor the use of European Institutions’ budget for employee benefits to make sure it promotes inclusive education for EU staff’s children with disabilities.

 

Acknowledgments

This report was written and researched by Lea Labaki, junior researcher and advocate in the Disability Rights Division at Human Rights Watch.

The report was edited by Shantha Rau Barriga, Disability Rights Division director; Babatunde Olugboji, deputy director in the Program Office; Judith Sunderland, associate director for the Europe and Central Asia Division; and Elin Martínez, researcher in the Children's Rights Division. Aisling Reidy, senior legal advisor, provided legal review. Elise Fabre, intern in the Disability Rights Division, provided research support. Layout, design, and production were coordinated by Fitzroy Hepkins, administrative manager; and Karolina Kozik, coordinator in the Disability Rights Division.

The European Disability Forum’s Executive Committee; Catherine Naughton, director; Marine Uldry, human rights officer; and Haydn Hammersley, social policy officer; reviewed the report for the European Disability Forum.

Human Rights Watch and the European Disability would like to thank the European Commission’s Disability Support Group for their support and insight.

A special thank you to the teacher who initially shared her concerns and acted as catalyst for this report.

Most importantly, Human Rights Watch and the European Disability Forum thank the children with disabilities and parents who told us their personal stories, all of whom spoke with courage and dignity about their experiences and their hopes for a more inclusive society.

 

 

[1] "Convention defining the Statute of the European Schools," 21994A0817(01), OJ L 212, August 17, 1994, https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A21994A0817%2... (accessed November 22, 2018).

[2] Schola Europea, Office of the Secretary-General, “Preliminary Draft Budget 2019,” Board of Governors, http://www.gudee.eu/DOC2016/2018-03-D-6-en-3a.pdf.

[3] Human Rights Watch interview with Andreas Beckmann, the deputy secretary-general of the European Schools, Brussels, November 14, 2018.

[4] United Nations Committee on the Rights of Persons with Disabilities, “Concluding observations on the initial report of the European Union,” CRPD/C/EU/CO/1, October 2, 2015, https://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?s... (accessed November 22, 2018).

[5] CRPD, art. 24 (2) (a).

[6] European Commission, “A Better Workplace for All: From Equal Opportunities Towards Diversity and Inclusion”, Diversity and Gender Equality Report 2018, July 19, 2018, on file with Human Rights Watch.

[7] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Policy on the Provision of Educational Support in the European Schools," 2012-05-D-14-en-9, https://www.eursc.eu/Documents/2012-05-D-14-en-9.pdf.

[8] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Statistical Report on Educational Support and on the integration of pupils with Special Educational Needs into the European Schools in the year 2016-2017," 2017-11-D-24-en-4, https://www.eursc.eu/Documents/2017-11-D-24-en-4.pdf.

[9] Human Rights Watch phone interview with Eva (real name withheld), October 16, 2018.

[10] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Statistical Report on Educational Support and on the integration of pupils with Special Educational Needs into the European Schools in the year 2016-2017," 2017-11-D-24-en-4, https://www.eursc.eu/Documents/2017-11-D-24-en-4.pdf.

[11] Human Rights Watch interview with the mother of a boy with autism (name and location withheld), October 2018 (specific date withheld).

[12] Human Rights Watch separate interviews with Brian Goggins, director, and Micheline Sciberras, support coordinator, European School of Brussels I, Brussels, October 18, 2018; and with Manuel Bordoy, director, and Andreas Mattuscheck, support coordinator, European School of Brussels IV, Brussels, October 17, 2018.

[13] Human Rights Watch interview with Brian Goggins, director, and Micheline Sciberras, support coordinator, European School of Brussels I, Brussels, October 18, 2018.

[14] Human Rights Watch interview with Angèle (real name and location withheld), September 20, 2018.

[15] Human Rights Watch interview with Cristian (real name and location withheld), October 19, 2018.

[16] Human Rights Watch interview with Maria (real name and location withheld), October 4, 2018.

[17] Centre pour l'égalité des chances et la lutte contre le racisme (UNIA), "Discrimination of Persons with a Disability" (« Discrimination des personnes avec un handicap »), Brussels, July 2009, https://www.unia.be/files/Z_ARCHIEF/CGKR_handicap_FR_Web.pdf (accessed November 22, 2018).

[18] Human Rights Watch interview with Maria (real name and location withheld), October 4, 2018.

[19] Human Rights Watch interview with the parents of Theo (real name and location withheld), October 16, 2018.

[20] Human Rights Watch interview with the mother of Louise (real name and location withheld), September 20, 2018.

[21] Schola Europea, Office of the Secretary-General, "Job description of a SEN Assistant. Working group 'SEN Policy,'” 2011-07-D-1-en-1, September 28, 2011, https://www.eursc.eu/Documents/2011-07-D-1-en-1.pdf (accessed November 22, 2018).

[22] Human Rights Watch interview with Angèle (real name and location withheld), 20 September 2018.

[23] Human Rights Watch interview with Marius (real name and location withheld), October 3, 2018.

[24] Human Rights Watch interview with Anna (real name and location withheld), September 17, 2018.

[25] Human Rights Watch interview with the mother of Theo (real name and location withheld), October 16, 2018.

[26] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Policy on the Provision of Educational Support in the European Schools," 2012-05-D-14-en-9, https://www.eursc.eu/Documents/2012-05-D-14-en-9.pdf.

[27] CRPD, art. 24 (2) (c).

[28] Human Rights Watch interview with Claire (real name and location withheld), September 26, 2018.

[29] Human Rights Watch interview with the parents of Theo (real name and location withheld), October 16, 2018.

[30] Human Rights Watch interview with the mother of Louise (real name and location withheld), September 20, 2018

[31] Schola Europea, Office of the Secretary-General, General Secretariat, "Digest of Decisions of the Board of Governors of the European Schools. 43rd edition," 2014-02-D-14-en-3, https://www.eursc.eu/Documents/2014-02-D-14-en-3.pdf (accessed November 22, 2018).

[32] Human Rights Watch separate interviews with Andreas Beckmann, the deputy secretary-general of the European Schools, Brussels, November 14, 2018; and with Brian Goggins, director, and Micheline Sciberras, support coordinator, European School of Brussels I, Brussels, October 18, 2018.

[33] Human Rights Watch interview with Andreas Beckmann, the deputy secretary-general of the European Schools, Brussels, November 14, 2018.

[34] Human Rights Watch phone interview with Eva (real name withheld), October 16, 2018.

[35] Human Rights Watch interview with Cristian (real name and location withheld), October 19, 2018.

[36] Human Rights Watch phone interview with Eva (real name withheld), October 16, 2018.

[37] Human Rights Watch interview with Angèle (real name and location withheld), September 20, 2018.

[38] Human Rights Watch interview with Adrian (real name and location withheld), October 17, 2018.

[39] Human Rights Watch interview with the mother of Adrian (real name and location withheld), September 17, 2018.

[40] Human Rights Watch interview with the parents of Theo (real name and location withheld), October 16, 2018.

[41] Human Rights Watch interview with Adrian (real name and location withheld), October 17, 2018.

[42] Human Rights Watch phone interview with the mother of David (real name withheld), October 16, 2018.

[43] Human Rights Watch interview with Manuel Bordoy, director, and Andreas Mattuscheck, support coordinator, European School of Brussels IV, Brussels, October 17, 2018.

[44] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Policy on the Provision of Educational Support in the European Schools," 2012-05-D-14-en-9, https://www.eursc.eu/Documents/2012-05-D-14-en-9.pdf.

[45] Human Rights Watch interview with Andreas Beckmann, the deputy secretary-General of the European Schools, Brussels, November 14, 2018.

[46] Human Rights Watch interview with Brian Goggins, director, and Micheline Sciberras, support coordinator, European School of Brussels I, Brussels, October 18, 2018.

[47] Human Rights Watch interview with the Cristian (real name and location withheld), October 19, 2018.

[48] Human Rights Watch interview with Claire (real name and location withheld), September 26, 2018.

[49] Human Rights Watch interview with William (real name and location withheld), October 16, 2018.

[50] Human Rights Watch interview with Brian Goggins, director, and Micheline Sciberras, support coordinator, European School of Brussels I, Brussels, October 18, 2018.

[51] Council of Europe, Commissioner for Human Rights, "Fighting school segregation in Europe through inclusive education. Position paper," September 2017, https://rm.coe.int/fighting-school-segregationin-europe-throughinclusive... (accessed November 22, 2018).

[52] Human Rights Watch interview with Brian Goggins, director, and Micheline Sciberras, support coordinator, European School of Brussels I, Brussels, October 18, 2018.

[53] Human Rights Watch interview with Manuel Bordoy, director, and Andreas Mattuscheck, support coordinator, European School of Brussels IV, Brussels, October 17, 2018.

[54] Human Rights Watch interview with Andreas Beckmann, the deputy secretary-general of the European Schools, Brussels, November 14, 2018.

[55] Human Rights Watch interview with Anna (real name and location withheld), September 17, 2018.

[56] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Provision of Educational Support in the European Schools – Procedural document," 2012-05-D-15-en-11, https://www.eursc.eu/Documents/2012-05-D-15-en-11.pdf (accessed November 22, 2018).

[57] Human Rights Watch interview with Daniela Carzaniga, Brussels, October 11, 2018.

[58] Schola Europea, Office of the Secretary-General, "Service Regulations for the Administrative and Ancillary Staff (AAS) of the European Schools Approved by the Board of Governors at Its Meeting in Lisbon on 17-18 April 2007," 2007-D-153-en-7, https://www.eursc.eu/BasicTexts/2007-D-153-en-7.pdf (accessed November 22, 2018).

[59] Human Rights Watch interview with Isabel (real name and location withheld), September 27, 2018.

[60] Human Rights Watch interview with Bruno (real name and location withheld), October 15, 2018.

[61] UNIA, "A first judgement finally recognizes the inclusive school” (« Un premier jugement reconnait enfin l’école inclusive »), November 12, 2018, https://www.unia.be/fr/articles/le-premier-jugement-qui-reconnait-enfin-... (accessed November 22, 2018).

[62] Council of Europe, "Report by Nils Muižnieks, Commissioner for Human Rights of the Council of Europe, Following his Visit to Belgium from 14 to 18 September 2015," CommDH(2016)1, January 28, 2016, https://rm.coe.int/ref/CommDH(2016)1 (accessed November 22, 2018).

[63] UNIA, "Court of First Instance Antwerp, 7 November 2018” (« Tribunal première instance Anvers, 7 novembre 2018 »), November 12, 2018, https://www.unia.be/fr/jurisprudence-alternatives/jurisprudence/tribunal... (accessed November 22, 2018).

[64] Human Rights Watch interview with Angèle (real name and location withheld), September 20, 2018.

[65] Human Rights Watch interview with Maria (real name and location withheld), October 4, 2018.

[66] Human Rights watch phone interview with officials at the Human Resources and Security Directorate-General of the European Commission (names withheld), November 14, 2018.

[67] Schola Europea, Office of the Secretary-General, Pedagogical Development Unit, "Statistical Report on Educational Support and on the integration of pupils with Special Educational Needs into the European Schools in the year 2016-2017," 2017-11-D-24-en-4, https://www.eursc.eu/Documents/2017-11-D-24-en-4.pdf.

[68] European Commission, “A Better Workplace for All: From Equal Opportunities Towards Diversity and Inclusion”, Diversity and Gender Equality Report 2018, July 19, 2018, on file with Human Rights Watch.

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