Shantha Rau Barriga is 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 Central African Republic, China, Croatia, Ghana, India, Indonesia, Morocco, Nepal, Peru, Russia, Serbia, Uganda, the United States, Yemen and Zambia.  

Shantha was a member of the UNICEF Advisory Board for the 2013 State of the World’s Children report and is a founding member of the International Network of Women with Disabilities. 

Before joining Human Rights Watch, Shantha participated in the UN negotiations toward the Convention on the Rights of Persons with Disabilities. 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.

Posted: January 1, 1970, 12:00 am

My 4-year-old son came home from school as I was reading an article about the abuse of children with disabilities in orphanages. This time it was in Belarus. But I’ve seen it with my own eyes in Serbia, India, and Ghana.

Roman K., 18, (left) and Lyuba P., 15, in a “lying-down” ward of an orphanage for children with disabilities in northwest Russia. Roman K. was awaiting transfer to an institution for adults with disabilities. A pediatrician specializing in the health of children with disabilities told Human Rights Watch that, based on photographs, both Roman K. and Lyuba P. appeared significantly underdeveloped for their ages, a possible result of lack of adequate nutrition, stimulation, and health care. © 2013 Andrea Mazzarino/Human Rights Watch

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“Their legs are toothpicks covered with skin,” the director of one Belarus orphanage put it. One 20-year-old weighed only 11.5 kilos (roughly 25 pounds). The images made me want to vomit. They reminded me of the photos my colleague took of children and young adults with disabilities in Russian orphanages, some as old as 18, still wearing diapers and lying in cribs, motionless and malnourished.

Although authorities in Belarus are investigating how these children and adults with disabilities ended up in this life-threatening condition and several orphanage directors were fired, it’s hard to grasp that such inhumanity could even happen in the first place. 

My son, noticing my horror, curled up next to me and asked what I was working on. I explained that children with disabilities sometimes don’t get enough attention and care, so they are not able to walk or play or go to school like everyone else.

Sveta L., a 13-year-old girl in her crib in a “lying-down” room of an orphanage for children with disabilities in northwest Russia. A pediatrician specializing in the health of children with disabilities told Human Rights Watch that, based on photographs, Sveta L. appeared significantly underdeveloped for her age, a possible result of lack of stimulation and a well-rounded diet. © 2013 Andrea Mazzarino/Human Rights Watch

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Then he asked: But why, Mama?

That’s precisely the question. Why is this happening in the 21st century? Why are these children viewed as less human than the rest of us? One of the doctors in Belarus even referred to the children saying, “there is no brain there.”

How do I explain this to my 4-year old?

I told him that children with disabilities, like all children, do best when they are cared for at home with their families, instead of in institutions or orphanages. But families often need help from their governments to do that.

Instead of investing in institutions, donors and governments should build up community-based services for children with disabilities and their families, such as inclusive schools and adequate health services. Governments should also support foster families and adoption. Advocates around the world are pushing for this, but progress has been excruciatingly slow.

I told my son that people should think about children and adults with disabilities as regular people who have the same rights as everyone else. That includes treating them with respect and kindness.

“Like the Golden Rule, Mama? Treat others like you want to be treated,” he said. If only it were that simple.

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

No child should be denied their right to learn because of poverty.

Two years ago, the International Covenant on Economic, Social and Cultural Rights, which states that primary education should be free and compulsory for all, came into force in South Africa. The Covenant requires governments that do not already provide free primary education to at least have a proper action plan in place to make primary education free to all children.

Two children sit on chairs in the New Covenant day care center, a center set-up and led by parents in Orange Farm township, Johannesburg, to cater to children with disabilities who are not admitted in the township’s mainstream schools

© 2015 Diane McCarthy/Human Rights Watch

But the government has yet to fulfil this basic obligation. In South Africa, public schools are not automatically free of charge. While many are “no fee” schools, no special schools – where most children with disabilities are erroneously sent to – fall into that category. So, while most primary school age children do not pay fees, those with disabilities often do. As a result, hundreds of thousands of children with disabilities in South Africa are still not in school.

The current fee-based system particularly discriminates against students with disabilities. Not only do children who attend special schools have to pay fees when others don’t, they also have to shoulder additional costs, such as uniforms, food, transport, and special assistants to help them. Fees in special schools typically range from R350-R750 (US$32-$68) per term.

Many parents told Human Rights Watch their children are not in school because the often hefty fees are unaffordable. Reneilwe, whose 10-year-old son with autism is still out of school, told us: “The only school that can offer a placement [for my son] is the one I can’t pay for.”

United Nations human rights experts have consistently reminded South Africa that it must ensure free and compulsory primary education for everyone. Last year, the UN Committee on the Rights of the Child also expressed alarm at the large number of children with disabilities not in school and urged the government to ensure free education.

But little progress has been made since then.

Next month, South Africa undergoes its third UN Universal Periodic Review, where countries’ human rights records are scrutinized by their peers. It is essential that countries press South Africa on its plan for free, compulsory primary education, so that all children can go to school.

 

Absence of personal wealth should never be a barrier to education.

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

(Brussels) – The European Parliament should ensure that European Union funds for refugees also reach those with disabilities, Human Rights Watch and the European Disability Forum said in advance of an event at the European Parliament in Brussels tomorrow, March 28. Thousands of asylum seekers have been trapped for over a year in horrifying conditions in Greece, since the adoption of the EU-Turkey deal, and the organizations are deeply concerned that refugees with disabilities are being overlooked in the humanitarian response.

Lagkadika camp, Thessaloniki, home to 234 asylum seekers and other migrants, as of January 5, 2017. The rocky terrain in many camps makes it difficult for people who use wheelchairs to move independently, including to access basic services such as toilets or showers. Photograph by Emina Cerimovic. © October 2016 Human Rights Watch

The event, “Refugees with Disabilities: Overlooked, Underserved,” is organized by the European Disability Forum, Human Rights Watch, and Brando Benifei, member of the European Parliament and vice-chair of the Disability Intergroup of the European Parliament, a cross-party grouping of Members of the European Parliament actively promoting the rights of people with disabilities. The event will bring together Parliament members, European Commission representatives, organizations of people with disabilities, refugees, United Nations agencies, and aid organizations.

“Refugees with disabilities are at heightened risk of violence, including sexual and domestic abuse, discrimination and exclusion from access to humanitarian assistance, education, livelihoods and health care,” said Gunta Anca, vice-president of the European Disability Forum and panelist at the European Parliament event. “The European Union has the legal obligation to ensure that persons with disabilities are included in its humanitarian response.”

Other panel members are Christos Stylianides, the commissioner for humanitarian aid and crisis management; Nujeen Mustafa, a young Syrian refugee with a disability; Edouard Rodier, Europe director of the Norwegian Refugee Council; and Emina Ćerimović, Disability Rights researcher at Human Rights Watch.

Refugees, asylum seekers, and other migrants with disabilities are not properly identified and do not enjoy equal access to services in reception centers in Greece, Human Rights Watch said today. Together with thousands of other migrants and asylum seekers, they remain unprotected from freezing temperatures.

Participants will discuss the specific problems that refugees, asylum seekers, and other migrants with disabilities face in Europe and steps the EU should take to address the problems. Nujeen Mustafa, who uses a wheelchair and who sought refuge from the war in Syria in Germany in 2015, will highlight that behind the statistics on migration are human beings fleeing deadly violence, some in the most challenging circumstances. They deserve dignified reception conditions, whether or not they have a disability.

In January, Human Rights Watch published its findings that people with disabilities were not being properly identified in the refugee reception system in Greece. The European Disability Forum’s mission to Greece in October 2016 had similar findings. Both documented that people with disabilities had difficulties getting access to basic services such as shelter, sanitation, and medical care, and like others, had limited access to mental health care.

In October, in the Elliniko camp in Athens, Human Rights Watch met 8-year-old Ali, from Afghanistan, who uses a wheelchair and could not use the camp’s toilets, which had narrow stalls and no ramps. As result, he had to start wearing diapers. After his conditions deteriorated for lack of adequate health care and physical rehabilitation, the United Nations refugee agency, UNHCR, finally moved his family from the squalid conditions in the camp to an apartment in Athens, UNHCR told Human Rights Watch in January 2017. But the needs of many other people with disabilities in Greece have not been met.

Addressing the rights and needs of people with disabilities and other at-risk people, such as unaccompanied minors, older people and pregnant women, should be at the core of the EU’s response to refugees.

Emina Ćerimović

Disability Rights Researcher

One problem is poor management of humanitarian funds by the Greek government, UNHCR, and other humanitarian aid agencies. Another problem is the lack of control and monitoring by the EU, and particularly the European Commission, to ensure that these funds benefit people with disabilities and other at-risk groups.

“Addressing the rights and needs of people with disabilities and other at-risk people, such as unaccompanied minors, older people and pregnant women, should be at the core of the EU’s response to refugees,” Ćerimović said. “There needs to be sufficient accountability of the European Union’s abundant funds for refugees and asylum seekers so that we know where this money is going.”

The United Nations Convention on the Rights of Persons with Disabilities, ratified by the European Union in 2010, requires European authorities to ensure the protection and safety of people with disabilities in situations of armed conflict, humanitarian emergencies, and natural disasters.

The humanitarian response in Greece is the most expensive in history when measured by the cost per beneficiary, according to humanitarian aid specialists. The Greek government, with the support of the EU and its member states, should remove all obstacles in its asylum system preventing refugees from receiving the assistance they need.

The European Commission should also ensure that the allocated aid benefits all refugees without discrimination, including people with disabilities. As a first important step, the European Commission should clearly instruct the Greek government and its partner agencies operating aid programs for refugees to ensure the inclusion of people with disabilities, and request information about how the programs it funds benefit people with disabilities and other at-risk groups.

The European Parliament should use its oversight role to ensure that the EU’s response is not discriminatory and that there is improved accountability for the use of EU funds for refugees, asylum seekers and migrants in Europe.

The member states of the EU should also accelerate relocation of asylum seekers, including those with disabilities, from Greece to other EU countries.

“As the umbrella organization representing over 80 million people with disabilities in Europe, we will keep on reminding the European Union of its obligations to protect and promote the rights of persons with disabilities, until every refugee and migrant with a disability in Europe is received in dignified conditions,” Anca said.

 

Posted: January 1, 1970, 12:00 am
(Athens) – The EU-Turkey deal has trapped thousands of people in abysmal conditions on the Greek islands for the past year, while denying most access to asylum procedures and refugee protection, Human Rights Watch said today. This assessment of conditions is released ahead of the first anniversary of the agreement, signed on March 18, 2016.
 

A refugee squat in an abandoned factory on Lesbos, Greece, where dozens of asylum seekers are living in fear of being forcibly returned to Turkey under the EU-Turkey deal. 

© 2017 Arash Hampay for Human Rights Watch

To carry out the deal, the Greek government has adopted a containment policy, keeping asylum seekers confined to the islands, including in the so-called refugee hotspots and other reception facilities, to facilitate speedy processing and return to Turkey. But continued arrivals, the mismanagement of aid funding, and the slow pace of decision-making, as well as the positive decisions of Greek appeals committees rejecting summary returns to Turkey as unsafe, have led to overcrowded and abysmal conditions on the Greek islands. These factors, combined with the Greek authorities’ failure to properly identify vulnerable asylum seekers for transfer to the mainland, have resulted in deteriorating security conditions, unnecessary suffering, and despair.

“The EU-Turkey deal has been an unmitigated disaster for the very people it is supposed to protect – the asylum seekers trapped in appalling conditions on Greek islands,” said Eva Cossé, Greece researcher at Human Rights Watch. “Greek authorities should ensure that people landing on Greece’s shores have meaningful access to asylum and put an end to the containment policy for asylum seekers.”

Asylum seekers from Algeria at a refugee squat on Lesbos. People of certain nationalities presumptively considered “economic migrants,” such as Algerians, are treated as having manifestly unfounded claims, and are often detained on that basis. 

© 2017 Arash Hampay for Human Rights Watch

Human Rights Watch has made repeated visits to official and informal reception facilities on the Greek islands since the EU-Turkey deal came into effect, most recently to Lesbos in late February 2017. Dozens of interviews with asylum seekers and migrants trapped on the islands show the detrimental impact of the deal on their human rights. Human Rights Watch has also found abysmal conditions in official reception facilities on the Greek mainland, but with more prospects for improving reception conditions and asylum processing procedures there compared to the islands.

According to figures from UNHCR, the United Nations refugee agency, the maximum official reception capacity at official and informal reception facilities on the five main islands receiving asylum seekers and migrants is 8,759, compared with the 12,963 asylum seekers on the islands as of March 14. Facilities with almost twice as many people as they are meant to serve are not able to cope with the continuing arrivals of small numbers of people fleeing conflict zones such as Syria, Iraq, and Afghanistan. Conditions in some facilities on the mainland are also poor, and require improvement to bring them up to humanitarian standards, in line with Greece’s obligations, Human Rights Watch said.

While Greece has received significant assistance from European Union institutions and member states, the European Commission has also pressured Greece to weaken procedural safeguards and protections for vulnerable groups and to speed up operations under the deal to facilitate transfers to Turkey.

The deal’s flawed assumption that Turkey is a safe country for asylum seekers would allow Greece to transfer them back to Turkey without considering the merits of their asylum claims. But in the months after the deal was completed, Greek asylum appeals committees have rightly ruled in many instances that Turkey does not provide effective protection for refugees and that asylum applications should be admitted for regular examination on their merits in Greece.

Following EU pressure, however, Athens changed the composition of the appeals committees in June, and the restructured committees have ruled in at least 20 cases that Turkey was a safe country, even though it excludes non-Europeans from its refugee protection. That finding was challenged by two Syrian asylum seekers at Greece’s highest court, the Council of State, which heard their case on March 10.

No one has yet been forcibly returned to Turkey on the grounds that their asylum application was inadmissible because they could obtain effective protection in Turkey. But if the Council of State turns down the appeal, it could pave the way for mass returns of asylum seekers to Turkey.

 

A makeshift shelter at a squat in an abandoned building, on Lesbos, where Syrian asylum seekers live. Since the EU-Turkey deal entered into force, in March 2016, thousands of people have been trapped in abysmal conditions on the Greek islands. 

© 2017 Arash Hampay for Human Rights Watch

In an Action Plan published in December 2016, the European Commission recommended tougher measures aimed at increasing the number of returns to Turkey, including ending exemptions for vulnerable groups and people eligible for family reunification from the requirement to remain on the islands and go through the fast-track admissibility process that could result in a return to Turkey. The commission also recommended expanding detention on the islands and curbing appeal rights. The Greek parliament was to consider legal changes to carry out those recommendations during the week of March 13, 2017.

Greece should resist EU pressure to weaken protections for vulnerable asylum seekers, to expand detention on the islands, to weaken appeal rights, and to send asylum seekers back to Turkey without first determining their protection needs, Human Rights Watch said.

While the EU-Turkey statement does not explicitly require keeping asylum seekers on the islands, EU and Greek officials cite implementation of the deal as a justification for the containment policy. Even if transferring asylum seekers to the mainland would complicate possible returns to Turkey, this is an unacceptable excuse for condemning people to conditions that threaten their health and cause huge anxiety, Human Rights Watch said.

“If the EU is serious about preserving the right to seek asylum, it needs to take a hard look at how the failings of the EU-Turkey deal apply in practice,” Cossé said. “A better-managed and rights-oriented approach by the EU would have put less of a burden on Greece and resulted in better protection and less suffering for thousands of people fleeing war and persecution.”

For more information on flaws in Greece’s current asylum system under the EU-Turkey deal and accounts from asylum seekers and migrants trapped in abusive conditions on the Greek islands, please see below.

Greece’s Flawed Asylum System
Despite significant financial and technical assistance to Greece, there are serious shortcomings in access to asylum for those on the islands. An April 2016 law to facilitate the implementation of the EU-Turkey deal creates a fast-track procedure to examine eligibility and admissibility for international protection claims on the islands within 15 days, including appeal. The law does not guarantee free legal assistance for the initial procedure and limits the possibility for an oral hearing during an appeal, undermining the effective exercise of asylum seekers’ rights.

In practice, the decisions are taking far longer, leaving people in limbo. Human Rights Watch has also documented discrepancies between the periods that people of different nationalities have had to wait to register their asylum claims or to have them examined. People of certain nationalities presumptively considered “economic migrants” are treated as having manifestly unfounded claims, and are often detained at police stations and detention facilities inside the hotspots on that basis, raising concerns about the use of arbitrary detention on the basis of nationality. This differential treatment and frustration at delayed procedures has led in some cases to unrest in detention centers. Other problems include poor or no interpretation during interviews in some cases, and serious gaps in access to information and legal assistance.

Asylum seekers who arrived on the islands after the EU-Turkey deal came into effect are considered ineligible for relocation to other EU countries under a September 2015 EU relocation plan designed to alleviate pressure on Greece and Italy, even if asylum seekers meet other criteria.

Human Rights Watch has also documented failure to carry out the first reception process, which under Greek law provides for transferring “vulnerable groups” into the regular asylum system on the mainland with easier access to services. Instead, many members of  “vulnerable” groups – including pregnant women, unaccompanied children, single parents with children, victims of torture, and people with disabilities – have remained trapped on the islands, especially people with less apparent “vulnerabilities,” such as people with intellectual or psychosocial disabilities or torture victims.

According to the European Commission, since the deal entered into effect, 916 third-country nationals have been returned to Turkey, either on a voluntary or involuntary basis. The commission said that some did not apply for asylum, others withdrew their asylum application after a negative decision on their first hearing, and others were rejected for asylum after an examination on the merits. Human Rights Watch, other nongovernmental organizations, and UNHCR have documented many irregularities in the forcible returns to Turkey of those the Greek authorities portray as not having applied for asylum.

The EU-Turkey agreement has set a dangerous precedent by putting at risk the very principle of the right to seek asylum in the EU’s Charter of Fundamental Rights, Human Rights Watch said. Turkey cannot be considered a safe country for non-European refugees and asylum seekers because it does not provide effective protection, including its geographical limitation to the 1951 Refugee Convention that excludes non-Europeans from consideration for refugee status. In Turkey, Syrian refugees face obstacles to registration, access to education, employment, and health care, despite having access to temporary protection status. Others, including Iraqis and Afghans, do not have temporary protection status. Finally, Turkey’s border with Syria remains effectively closed.

The European Union and its member states are currently exploring the idea of similar arrangements to the EU-Turkey deal with North African countries, as part of a wider effort to move legal and administrative responsibility for asylum seekers outside EU borders.

 

Trapped in Dire Conditions: Recent Accounts
Reza, 23, from Afghanistan, arrived on Lesbos in March 2016, right after the EU-Turkey deal entered into force. He said, in February 2017, that the conditions on the island and uncertainty about the future cause mental anguish:

I arrived on March 21 [2016] so I’m almost a year here. I don’t have a legal paper to leave the island and I don’t have money to pay a smuggler. I feel I am nothing and that I don’t have control over my life anymore. I can’t leave from the island and after such a long time here, I feel that nothing has a purpose anymore. You feel like ‘crazy,’ wandering around without knowing why.

Heavy snow, rain, and strong winds in January exacerbated the already dire conditions on the islands that are housing refugees. Mazar Ali, a 23-year-old man from Afghanistan on Lesbos, said in February:

Our tent was outside in the snow and it got destroyed [because of the snow]. We went to Eurorelief [an aid organization in charge of accommodations] to get a new tent but it took them three days to give us a new one so we slept outside. We’re not allowed to leave from the island. You feel like being in a big prison here on the island. Many times, I feel I can’t breathe freely.

43-year-old Dilshad, a Kurdish asylum seeker from Iraq who reached Lesbos in September, said in February:

They told me to go to Eurorelief, take a tent, find somewhere to put it and live there.... Since then I am living inside a [summer] tent. As you can see living conditions are not good. Food is not edible.

Three men died on Lesbos in the six days between January 24 and 30. Although there is no official statement on the cause of these deaths, they have been attributed to carbon monoxide poisoning from makeshift heating devices that refugees have been using to warm their freezing tents. In late 2016, a blast most likely caused by a cooking gas container killed an elderly Kurdish woman and her young grandchild at Moria.

Dilshad described the harsh conditions after the heavy snowfall in Lesbos, in January 2017:

My tent was coming down because of the snow. It was very hard and really, really cold. Once, a woman and a child died [inside the camp].... I want to be somewhere where I’m not in danger anymore. I am scared here.

A refugee tent at a squat in an abandoned factory on Lesbos, Greece, where dozens of asylum seekers are living. Due to the dire and dangerous conditions in official facilities, many chose to live in abandoned buildings around Mytilene. 

© 2017 Arash Hampay for Human Rights Watch

Lack of Identification of Vulnerable Groups
The Reception and Identification Service – supported by EU agencies such as Frontex and the European Asylum Support Office (EASO), medical aid organizations, and the UNHCR – is responsible for identifying and registering people who belong to “vulnerable” groups upon their arrival. This should include torture victims, and people with disabilities, including mental health conditions. But this screening is not always effective.

Nearly all asylum seekers and migrants interviewed reported feeling that their current lives were meaningless. They said they were frightened, depressed, and in some cases, suicidal. Living on the islands perpetuates the trauma of displacement and despair and increases other threats to their safety, including physical violence and mental health concerns. Even people who do not have specific vulnerabilities should not be living under conditions that could amount to inhuman and degrading treatment, Human Rights Watch said.

“Arash,” 30, from Iran, described how conditions in the Moria hotspot, the EU-sponsored screening center on Lesbos where he’s been living since September 2016, have affected his mental state:

I’m suffering a lot here because I’ve lost my dignity. I’ve attempted three times to kill myself…. The conditions here remind me of the prison in Iran, the nightmares, the threats and the torture. The situation brings me to a very desperate condition. The medical certificates say this is not a place fit for me, but for the authorities this means nothing. Five days ago, they transferred me and my brother from the tent to a container. For six months, I was living in a small summer tent.

Arash said that during the first medical screening with Doctors of the World, he was assessed as not belonging to one of the vulnerable groups exempted from the EU-Turkey deal and allowed to move to the mainland, even though victims of torture are a protected category:

I told them I was a political prisoner, that I’ve been tortured, and suffered mock executions three times.... They asked me why I wasn’t executed and I explained this is a form of torture. I described all the physical and psychological problems I have but they wrote ‘No’ on my paper. 

Human Rights Watch contacted a Doctors of the World representative in Greece about Arash’s case. The representative said that during his initial medical screening, Arash had no visible injuries on his body and declined when asked if he wanted to speak to a psychologist or social worker. Arash later did request psychological support from Doctors of the World, who then asked Greek authorities to give him “vulnerable” status as a possible victim of torture. The request was refused, the Doctors of the World representative said.

Arash said his mental health deteriorated while on Lesbos. He told us that three days before attempting to commit suicide, he tried to visit the camp’s psychologist and told them he was tortured in prison and still has nightmares. The camp reminded him of the prison. The psychologist’s response was that “there are 90 people ahead of you in the line and you have to wait.”

Earlier in 2017, Human Rights Watch documented the failure of Greek authorities and supporting partners to identify people with disabilities. Human Rights Watch also found a lack of access to mental health care and psychosocial support that is much-needed by asylum seekers and other migrants in Greece.

Ahmed and Fatima, an Iraqi couple in their late twenties, both have physical disabilities that make it very difficult for them to stand or walk. They told Human Rights Watch in October 2016 that they were not allowed to register their disabilities because they did not have a medical certificate for proof. “When we went to register [on Samos Island] they asked us for proof that we have disabilities even though they can see we do,” said Fatima, who now uses a wheelchair.

Seeking Asylum Under the Deal
“Ahmad,” a 36-year-old Syrian asylum seeker from Homs, arrived at Lesbos in July 2016. In February 2017, he described his interview under the EU-Turkey deal, in which the interviewer did not explain the purpose of the interview, would not consider his claim for asylum based on his persecution in Syria, and focused only on his time in Turkey, but did not adequately consider the lack of protection he experienced there:

When I got here they told me “either you apply for asylum or you go back to Turkey.” I applied for asylum, I got rejected, and now I am waiting for the appeal. They said “the court considered Turkey is a safe country for you so you are rejected.” I felt disappointment. They said I have to appeal or I’ll go to prison or be deported.

Ahmad said he had spent two months in Turkey, where he tried unsuccessfully to register for temporary protection. He said without registration he was denied access to health care for serious back pain because he lacked the necessary residence documents. In his interview in Lesbos, he said:

They didn’t explain the purpose of the interview but said I am not allowed to have a lawyer. They said, “if your application is rejected, then you are allowed to have a lawyer.” The most important thing during the interview was that the questions were all about Turkey. But I am not a Turkish man escaping Turkey. They should ask me about Syria instead. I always try to forget this interview. During the interview, they tried to avoid listening to what I had to say about Syria. It’s like a deal: “We need something on Turkey to reject you.”

“Willias,” a 27-year-old asylum seeker from Nigeria who arrived in Greece in June 2016, in February 2017 described his interview four months earlier:

During the interview, I was alone, I didn't have a lawyer and there was no translator. I spoke in English and I’m not good in English. I asked for a translator and the man who was in charge of the interview said the translator was not around. Then I got the negative answer. They gave me a lawyer and we asked for appeal. I don’t know what will happen, they don’t give details. I can’t go back to Turkey. I would rather die. I was in jail and I don’t like that. And the same goes for my country.

43-year-old Dilshad, the Kurdish asylum seeker from Iraq who reached Lesbos in September, gave a similar account in February:

I’ve done two interviews. Very simple questions. I don't know who they were. The interpreter was speaking Farsi. They told me there was no available interpreter for Kurdish. They didn’t explain to me what the interview was. They just told me to wait in my tent and that they will call me…. During the second interview they asked me: “If you go back to Turkey and have the possibility to get papers is it OK for you?” and I said no because I was imprisoned there.

Hussein Sherif, a 37-year-old man from Iraq who arrived in Greece at the end of August, said in February that he had not yet been interviewed: “They told me the closest date for an interview is March 23. But other people who came after me have received a closer date for an interview. I feel they treat people depending on their mood. They treat animals better than us humans.”

Hussein said he had been attacked and repeatedly stabbed on the belly by three Iraqi men, in Mytilene, Lesbos. He was hospitalized for 10 days and underwent surgery: “I went to the police to file a complaint and they told me I have to pay 100 euros and that it will take time. I left it and hid for two months in an apartment in Mytilene because I was afraid.”

An abandoned factory on the island of Mytilene, that has been turned into a squat and shelter for asylum seekers stranded there. 

© 2017 Arash Hampay for Human Rights Watch

Reza, the 23-year-old Afghan asylum seeker who arrived in Greece one day after the EU-Turkey deal entered into force, said that in the first two months on Lesbos, he had no information about the asylum process and what would happen to him: “Then, an NGO came and told us that borders have closed and that we have to apply for asylum. But I didn’t know how to do it.”

Reza said that six months after he expressed his wish to apply for asylum, he received an asylum seeker’s card, but he said he is one of the few Afghans who have been through an asylum interview:

In the beginning, only Syrians were going through an interview. I am one of the few who was interviewed, three months ago. But I don’t have an answer yet. There are people who’ve been here for 10 months and haven’t been through an interview and others who are 20 days here and have left for Athens.

Reza said that the purpose of the interview was not explained to him:

The man who was interviewing me was a foreigner, probably from the European Union, and there was also an interpreter. They said from the beginning that they don’t want to know if I had problems in my country and that they only care if I had problems on my way here. For many times, they asked me why I didn’t stay in Turkey, and explained to me that Turkey is a safe country. I explained to them that Turkey is not safe. It’s a harsh country and you don’t feel safe there. They’ve sent many people back in Afghanistan and when I was there authorities threatened me that they will deport me back.

Samir, 21, from Algeria, said in February that when he arrived on Lesbos, he was detained in a closed facility inside the Moria hotspot, though people of other nationalities were allowed to go in and out of the camp:

At sea [in the Aegean], Swedish coast guard caught us. After that, we were directly brought to Moria and put to prison. This is the problem. When they hear Algeria, they put us immediately into detention, even if we’ve done nothing. When I arrived, they told me that I will stay for 25 days in detention and after that, if I don’t get asylum I will be sent back to Turkey…. I stayed for eight days in prison and then I decided to escape, while going to the interview with EASO [European Asylum Support Office].

“Fezi,” a 23-year-old Pakistani man, said he fled the area he was living, in Peshawar, because of the high incidence of suicide bombings and drone attacks. He described in February what happened to him after he arrived in Lesbos:

I stayed in Moria for eight to nine months. During that period, they took me for two months to jail [immigration detention inside Moria]. I don’t know why. The police came, put me in handcuffs, and took me to jail inside Moria. They didn’t explain why. They took my papers and everything I had. After two months, they gave me my papers back and said, “You can go.” I was afraid because all Pakistanis go to the EASO interviews and they fail. Every single Pakistani is rejected except those who are Christian.

Posted: January 1, 1970, 12:00 am

As the world celebrates International Women’s Day, I think of “Merri,” one of the most formidable and resilient women I have ever met. A 50-year-old Aboriginal woman with a mental health condition, Merri grew up in a remote community in the Kimberley region of Western Australia. When I met her, Merri was in pre-trial detention in an Australian prison. It was the first time she had been to prison and it was clear she was still reeling from trauma. But she was also defiant.

“Six months ago, I got sick of being bashed so I killed him,” she said. “I spent five years with him [my partner] being bashed; he gave me a freaking [sexually transmitted] disease. Now I have to suffer [in prison].”

Merri’s story is not uncommon. Studies show that women with physical, sensory, intellectual, or psychosocial disabilities (mental health conditions) experience higher rates of domestic and sexual violence and abuse than other women. More than 70 percent of women with disabilities in Australia have experienced sexual violence, and they are 40 percent more likely to face domestic violence than other women.

Indigenous women are 35 times more likely to be hospitalized as a result of domestic violence than non-indigenous women. Indigenous women who have a disability face intersecting forms of discrimination because of their gender, disability, and ethnicity that leave them at even greater risk of experiencing violence—and of being involved in violence and imprisoned.

I recently traveled through Western Australia visiting prisons, and I heard story after story of indigenous women with disabilities whose lives had been cycles of abuse and imprisonment, without effective help. For many women who need help, support services are simply not available. They may be too far away, hard to find, or not culturally sensitive or accessible to women. The result is that Australia’s prisons are disproportionately full of indigenous women with disabilities, who are also more likely to be incarcerated for minor offenses.

For numerous women like Merri in many parts of the country, prisons have become a default accommodation and support option due to a dearth of appropriate community-based services. As with countless women with disabilities, Merri’s disability was not identified until she reached prison. She had not received any support services in the community.

Merri has single-handedly raised her children as well as her grandchildren, but without any support or access to mental health services, life in the community has been a struggle for her. Strangely—and tragically—prison represented a respite for Merri. With eyes glistening with tears, she told me: “[Prison] is very stressful. But I’m finding it a break from a lot of stress outside.”

Today, on International Women’s Day, the Australian government should commit to making it a priority to meet the needs of women with disabilities who are at-risk of violence and abuse. In 2015, a Senate inquiry into the abuse people with disabilities face in institutional and residential settings revealed the extensive and diverse forms of abuse they face both in institutions and the community. The inquiry recommended that the government set up a Royal Commission to conduct a more comprehensive investigation into the neglect, violence, and abuse faced by people with disabilities across Australia. The government has been unwilling to do so, citing the new National Disability Insurance Scheme (NDIS) Quality and Safeguard Framework as adequate.

While the framework is an important step forward, it would only reach people who are enrolled under the NDIS. Its complaints mechanism would not provide a comprehensive look at the diversity and scale of the violence people with disabilities experience, let alone at the ways in which various intersecting forms of discrimination affect people with disabilities.

The creation of a Royal Commission, on the other hand, could give voice to survivors of violence inside and outside the NDIS. It could direct a commission’s resources at a thorough investigation into the violence people with disabilities face in institutional and residential settings, as well as in the community.

The government urgently needs to hear directly from women like Merri about the challenges they face, and how the government can do better at helping them. Whether or not there is a Royal Commission, the government should consult women with disabilities, including indigenous women, and their representative organizations to learn how to strengthen support services. Government services that are gender and culturally appropriate, and accessible to women across the country, can curtail abuse and allow women with disabilities to live safe, independent lives in the community.

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

ABSTRACT

In many countries, children with disabilities are often deprived of their liberty, separated from family environments, and confined to institutions or locked away in so-called health-care facilities in the name of care and treatment. The reasons for this isolation vary:  stigma, lack of awareness and a dearth of support services for children and their families all play a role. Inside institutions in several countries, Human Rights Watch has documented that children with disabilities often face serious  neglect and abuse, including beatings and psychological violence, sexual violence,  involuntary and inappropriate medical treatment, use of abusive physical restraints, seclusion and sedation, denial of education and denial of regular contacts with families. These abuses can severely impede their physical, intellectual, emotional, and social development, and these harmful impacts are not limited to contexts in which the worst abuses take place. Global research has shown that children develop best with strong and supportive relationships in a safe and nurturing family-like environment. Children with disabilities are entitled to protection from violence, neglect, exploitation, and abuse, and have the right to be cared for by their parents or within family-like settings. Violence and neglect toward children living in institutions should end and governments should develop effective and accessible community services, including health care, child care support, inclusive education. When governments invest  in community-based services and support, children with disabilities can live with their families and be a part of their communities instead of behind locked doors.

 

INTRODUCTION

Estimates of the number of  children living in institutions worldwide range from two million to eight million.[1] These figures are often reported as underestimates, due to a lack of data from many countries and the large percentage of unregistered institutions.

A disproportionate number of children who are placed in institutions have disabilities. Many are held in abusive conditions, separated from their families and their communities, deprived of education, and neglected. The exact number of children with disabilities in institutions worldwide is unknown. Human Rights Watch documented an overrepresentation of children with disabilities in institutions in India, Japan, Serbia, and Russia. For example, as of 2014, nearly 80 percent of children in institutions in Serbia had  disabilities.[2] In Russia, too often children with disabilities are placed in institutions shortly after birth, where they may be tied to beds, denied health care and adequate nutrition, and receive little or no meaningful attention or education. Human Rights Watch has found similar abusive practices against children and adults with disabilities in Croatia, Ghana, Greece, India, Indonesia, and Japan.

 

In this article, we focus on the confinement of children with disabilities to institutions, social care centers, psychiatric hospitals, and informal traditional healing centers in which children may be detained on the basis of their disability and with no other options for care. From the start, it is worth nothing that the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides for an absolute ban on deprivation of liberty on the basis of disability in Article 14(1)(b).

The institutionalization of children with disabilities can amount to deprivation of liberty.[3] In many institutions, rooms and buildings where children live are routinely locked, children are not allowed to move freely without permission, caretakers exercise complete and effective control over a child's care and movements, sometimes even denying their family members permission  to visit. In many cases, there are no periodic reviews of a child’s placement in an institution. No child should be confined to an institution because of his or her disability. Instead, the government should provide the necessary and adequate support and services in the community so that all children can live with their families or in alternative family care, such as foster care and adoption.

In this article, we discuss the placement of children with disabilities in institutions and the subsequent abuses they often experience, drawing from Human Rights Watch research from 2013 to 2016. In line with international instruments, the term “child” as used in this report refers to a person under age 18.

BACKGROUND

 

It is often assumed that children with disabilities live in institutions because they need “specialized care” or because there is no one to take care of them. However, for almost 100 years, observational studies have documented stunted physical, intellectual, emotional, and social development among children separated from family environments and placed in institutions.[4] Regardless of an institution’s label, size, and location, institutional care is defined by certain characteristics that are harmful to children. Among these are: separation from families and the wider community;  confinement to groups homogeneous in age and disability; de-personalization; overcrowding; instability of caregiver relationships; lack of caregiver responsiveness; repetitive, fixed, daily timetables for sleep, eating, and hygiene routines not tailored to children’s needs and preferences; and sometimes, insufficient material resources.[5] 

Evidence has shown that institutionalization of babies harms their early brain development, can result in developmental delays and permanent disability, and may have long-lasting effects on their social and emotional behavior.[6] Other studies show that children who were moved from an institution into family-based environment demonstrated signs of improvement in their intellectual functioning and attachment patterns, reduced signs of emotional withdrawal, and reduced prevalence of mental health conditions.[7]

Institutional care for children is also often characterized by physical, psychological, and sexual violence by staff and other children.[8] Violence that children may experience in institutions is often long-term and can lead to severe developmental delays, various disabilities, irreversible psychological harm, and increased rates of suicide and criminal activity.[9] Institutionalization also results in segregation of children with disabilities from their families and communities – sometimes for their entire lives. They are separated from their parents and siblings and not provided with opportunities to form attachments.

Some institutions might have adequate resources and dedicated staff, but they cannot replace a family. Institutions cannot provide the attention and affection a child would receive from their own parents and families, or from foster parents in the community.[10] As one social worker in Serbia said, “I’ve worked in an institution for 20 years but never developed much caring for children. After all, it was group work. We couldn’t develop love like that [of parents and foster parents].”[11]

The vast majority of children with disabilities in institutions have a living parent and could live with their families given the right support services.[12] However, due to a lack of community-based health-care, support services, and adequate information, as well as poverty, stigma, discrimination, social exclusion, and neglect by authorities and social services[WU1] , parents in many countries are often pressured or feel they have no choice but to place their child with a disability in an institution.[13] 

 The Path to Institutionalization

Children with disabilities are placed in institutions for a variety of reasons. Often, parents are encouraged and advised to do so by professionals who claim that institutions will provide the most effective care. In other cases, there is a lack of accessible community services to support children with disabilities and their families and to allow families to care for these children at home.

Human Rights Watch documented how medical staff in Serbia often advise parents to place their child with a disability in institutions.[14] Jasmina Čuković, mother of Julija, a 4-year-old girl born with Apert syndrome, a rare genetic condition characterized by premature fusion of certain skull bones and webbing of the hands and feet, told Human Rights Watch that medical doctors and nurses tried to convince her and her husband to leave Julija in the maternity ward and to have her placed in an institution. “One doctor told us that ‘it will be a torment for you and you don’t know if you will receive anything back.’ Medical nurses would tell us ‘this is best for you and for her. It is better for her to be with children that are like her.’”[15]  After Julija was born, doctors and nurses did not bring her to her mother. Jasmina and her husband told Human Rights Watch that, despite repeated inquires, they were not given any information about their daughter’s health and well-being.

A social worker who works in one Serbian institution said that children born with serious health problems or disabilities in Serbia are often denied the opportunity to bond with their parents upon birth: “In the maternity wards, the practice is that parents do not make physical contact with infants [with disabilities].”[16] The social worker said that such a practice significantly hinders the establishment of an emotional connection and affectionate relationship between parents and an infant with disabilities.  The social worker also confirmed that professional staff in some hospitals instead may be quick to encourage parents to give up on their child with a disability:

Adequate professional advice and therapeutic and emotional support to parents is lacking. No information is provided on possible sources of support and instead, in the majority of cases, doctors provide parents with ready-made advice that it is easier and more practical or convenient for the child and for the parents to place the child in an institution.[17]

Human Rights Watch documented a similar pattern in Russia, where doctors and nurses may pressure parents of newborns with disabilities to relinquish custody on the basis that children will be unable to develop and form relationships, that parents will be unable to care for them, or that the children will die.[18]

Parents may also lack the health, social, and economic support to be able to provide the needed care and assistance to their child. For example, one of the key reasons for placing children with developmental disabilities in institutions in India, Russia and Serbia is the lack of community-based health-care.[19]

Another reason is that parents often decide to place their child in an institution as a means for them to get an education as there are no inclusive schools or day-care facilities in their communities. Ana, a single mother of a 12-year-old girl with physical and intellectual disabilities who lives five days a week in an institution and spends weekends at home, told Human Rights Watch: 

Not one single day-care center wanted to accept her. They explained they found her too hyperactive. I’ve spent a year and half begging for an alternative where my daughter could spend her time while I was at work and I did not succeed. Three years ago, with no other option available, I placed her in an institution. Now, she can also access education with other children in the institution. [20]

Human Rights Watch research has found how children who were deemed to be “severely disabled” were left behind in deinstitutionalization efforts in Serbia with government officials claiming their needs cannot be answered in a community setting.[21]  The practice of keeping children with high support needs in institutions instead of to a family-based environment is discriminatory against children with multiple disabilities. This practice could also lead to significant numbers of children with high support needs spending the rest of their lives in institutions.

 

CONSEQUENCES OF CONFINEMENT  

In many countries, children with disabilities are confined to institutions, isolated and segregated from their communities, and at risk of torture, abuse, and neglect. Human Rights Watch has documented some of the most egregious human rights violations against children inside of institutions and in other closed settings. These include beatings and the use of abusive physical restraints in Russia, sexual violence against girls with disabilities in India, the use of caged beds in Greece, inappropriate use of psychotropic medication in Serbia, and the shackling of children with disabilities in Ghana and Indonesia.

 

Physical and psychological abuse

Human Rights Watch research on children with disabilities living in state institutions in Russia and India documented that staff in some institutions used physical or psychological violence, or both, including as punishment for behaviors directly related to their disabilities.[22] Such physical punishments included beatings; pouring cold water over children’s heads; the use of physical restraints, including binding children to cribs or wheelchairs; and forced psychiatric hospitalization. Human Rights Watch also documented psychological violence in the form of forced isolation; threats of death, beatings, or psychiatric hospitalization; and humiliation and insults, including calling children “vegetables.”[23]

One young woman with a developmental disability who lived in a specialized state institution in Russia from 1998 to 2011 told Human Rights Watch that staff beat her on several occasions:

The staff used to hit me and drag me by the hair. They gave me pills to calm me down. They hit me when they came to work and found me roughhousing with the other kids…. When they got drunk, they would hit the other children and me often. I remember one incident, when a staff member was drunk. She asked me where the key to her office was. When I told her I did not know, she dragged me into a room and beat me up.[24]

Human Rights Watch research on women and girls with disabilities living in institutions in India found that staff frequently used verbal and physical violence. Physical violence included hitting girls with sticks and punching them. Many girls also stated that staff swore at them, using severe and humiliating language.[25]

In Serbia, Human Rights Watch also observed that some institution staff used derogatory language when speaking to children and young people with disabilities, and made statements to the effect that the children have no potential to learn or go to school, or that “no one wants them” in their presence. While Human Rights Watch did not document the most severe forms of physical or psychological violence against children in institutions in Serbia or India, the conditions observed in several institutions and the absence of effective safeguards – including no confidential complaint mechanism for people with disabilities in institutions and a lack of independent and periodic monitoring – create a risk that such abuses could  occur with impunity despite, in the case of Serbia, a 2012 rulebook prohibiting all forms of violence by staff working in institutions.[26] None of the children or young people interviewed by Human Rights Watch in India, Russia, Serbia had recourse to systems through which they could safely report violence without fear of retaliation.

In Ghana, children in prayer camps[27] were subjected to the same regime of fasting as adults and  were chained in the same conditions. Solomon, 9, who lived in Edumfa Prayer Camp and was often chained in the same room with about 20 other males told Human Rights Watch “I have been fasting for 21 days.… I feel pains in my stomach, my head, and my whole body.”

Risk of sexual violence against children with disabilities

While there is a dearth of disaggregated data on violence against children with disabilities, global trends suggest that they are likely to be at greater risk of violence.  An  meta-analysis of existing studies indicate that children with disabilities are 3.7 times more likely than children to be victims of any sort of violence, 3.6 times more likely to be victims of physical violence, and 2.9 times more likely to be victims of sexual violence. Children with psychosocial or intellectual disabilities are particularly vulnerable to violence and experience 4.6 times greater risk of sexual violence as children without disabilities.[28]

Human Rights Watch research in government and privately run psychiatric hospitals and institutions in India and Indonesia found that girls with disabilities, particularly psychosocial or intellectual disabilities, are at a heightened risk of violence, including sexual violence. Closed institutional settings further isolate children with disabilities, making violence and abuses against them difficult to discover and report. Many of these institutions restrict freedom and mobility to such an extent that they are like prisons. In fact, the management of such institutions and psychiatric hospitals in many countries even refer to their residents as  “inmates.”

A lack of accessible information on health, sex education, and support services contributes to the cycle of violence.[29] In some cases, girls with disabilities may be considered asexual or unlikely to be considered sexually attractive, thereby leaving them out of sex education and reproductive health outreach programs. In Indonesia, in seven of the state-run mental hospitals, social care institutions, and private faith healing centers visited by Human Rights Watch, male staff would enter and leave women’s and girls’ wards, or sections at will or were directly responsible for the women’s and girls’ section, including at night,  putting girls at increased risk of sexual violence. In traditional or religious healing centers, girls are chained next to men and boys, leaving them no option to run away if they encounter abuse.[30] Similarly in India, Human Rights Watch found three instances in which only male staff were appointed to female wards at night.[31]

Human Rights Watch research in Indonesia found that in order to prevent girls with disabilities from pregnancy as a result of sexual violence, staff in institutions gave them birth control, often without their consent or knowledge. When asked, staff members sometimes give residents a basic explanation of what the injection is for, but they sometimes falsely claim it is an injection of vitamins, if they sense the resident will resist or refuse. Some female residents who previously used contraception agreed to receive it from the institution staff. In other cases, staff forcibly administered the contraceptive injection. If female residents refused, staff locked them in a seclusion room as punishment. Human Rights Watch documented similarly involuntary and invasive medical interventions for young women with disabilities to prevent or terminate pregnancy and for cancer screening in Serbia. While physical and verbal abuse is common in the institutions and mental hospitals Human Rights Watch visited in many countries, sexual violence more often remains hidden as victims are less likely to talk about it.

Girls with psychosocial or intellectual disabilities are furthermore often restrained or institutionalized for unique gender-specific reasons, such as fear of sexual violence. For example, Human Rights Watch research in India and Indonesia found that families often keep girls with disabilities chained, locked at home, or in the custody of an institution, rather than using non-abusive means to ensure the girls do not wander away from home and potentially become targets for sexual violence.[32]

Girls with disabilities face barriers to reporting and getting criminal complaints registered and investigated in cases of sexual violence.[33] The problem is often compounded for girls with psychosocial or intellectual disabilities, because  the police are not convinced that the person is telling the truth or can identify the attacker. Girls with psychosocial or intellectual disabilities are also confronted with a lack of awareness and prejudice on the part of medical and legal professionals, who often do not believe the girls’ accounts, particularly reports of sexual violence.

 

Neglect

Children with disabilities in institutions often experience neglect, including lack of adequate nutrition, inadequate health-care, lack of access to rehabilitation services, insufficient access to education and play, and lack of individualized attention. For example, in Russia, Human Rights Watch researchers met children with disabilities in institutions who appeared to be significantly physically underdeveloped for their ages.[34] Many had protruding ribs and were unable to walk or crawl, despite the absence of physical or developmental disabilities that may have otherwise hindered them from being able to do so.[35] Children could not develop fully because of a lack of adequate nutrition and water, and of knowledge on the part of institution staff about appropriate feeding methods for children.[36]

In southern Greece, children with disabilities living in the Children Care Center of Lechaina were kept in wooden cage beds because of a shortage of staff to supervise them. Children with chronic diseases and disabilities did not receive adequate health-care, and most children did not have access to education.[37] Following visits to the center, the Inspection Body for Health Services and Welfare issued reports and recommendations in 2007 and 2009 stating that the care center did not employ the required qualified personnel, despite the need for continued surveillance of the patients. The Inspection Body also found deprivation of care, psychological support, and physiotherapy, and that the residents appeared not to receive regular medical or rehabilitation services.[38]

In Serbia, a lack of individualized attention for children with disabilities from caregivers proved to be a significant problem in residential institutions, in many cases leading to neglect.[39] For example, in one institution visited, in the so-called “ward for the most severely disabled,” there were only four caregivers and one nurse for 64 children and adults with disabilities per shift. Other than taking care of basic needs such as bathing, diaper changes, and feeding, there wasis little time for individual care or interaction with the children.

Staff in another institution in Serbia explained that the primary role of the scarce caregivers is to provide nursing and physical care. In the “ward for the most severely disabled” in the same institution, Human Rights Watch found most babies and children lying  on their backs, staring at the ceiling or wall, with no stimulation or interaction. In one of the rooms, Human Rights Watch found a 15-year-old boy with untreated hydrocephalus, lying motionless on a bed on his back. The vast majority of children living in wards “for the most severely disabled” in institutions across Serbia were not toilet trained and could not eat by themselves, being fed by nasogastric tubes instead. Institution staff recognized the lack of individual attention they could give children with disabilities.  Ana Tomašević, director of Stamnica Institutions in Serbia, told Human Rights Watch that “all of them need affection and attention, but they cannot receive it here.”[40]

Overcrowded conditions, coupled with a shortage of staff, contribute to children’s neglect. For example, as of November 2014, Asha Kiran, a government-run institution in Delhi, India, housed 891 people, close to three times its capacity. One member of the child welfare committee at the institution told Human Rights: “We send children to Asha Kiran with a very heavy heart because we know whatever skills and socialization—shaking hands, basic conversation and tasks—they have learned here will go [away] in a couple of weeks.”[41] An expert on institutions for people with intellectual disabilities in India added, “Seeing the state that children are in is absolutely shocking. Places shouldn't be like Asha Kiran.”[42]

Research has shown that the absence of a one-to-one relationship with a primary caregiver is a major cause of harm to a child’s development, and of attachment disorders.[43] The Special Rapporteur on Torture, in his 2015 report, noted that :

“One of the most egregious forms of abuse in health and social care settings is unique to children. Numerous studies have documented that a child’s healthy development depends on the child’s ability to form emotional attachments to a consistent care-giver . . .  Unfortunately, this fundamental need for reconnection is consistently not met in many institutions, leading to self-abuse. ”[44]

Involuntary and Inappropriate Medical Treatment

Children with disabilities living in institutions are often forced to take medication or given inappropriate medical treatment.  Human Rights Watch found that girls with psychosocial or intellectual disabilities living in institutions in India are forced to take medication.[45] The institution staff openly told Human Rights Watch that they hold girls down or forcibly open their mouths to coerce them to take medication. If that fails, they  sometimes force-feed girls food and drinks, such as bananas or tea, laced with medicines. Human Rights Watch found similar abuses in Ghana and Indonesia, where children are forced to take medication and alternative “treatments” such as concoctions of “magical” herbs.[46] “If they don’t take their medicine, we mix the medicine with water, banana, tea, or sugar,” a nurse in Indonesia said. “If they still refuse to take it, the doctor gives them an injection.” 

Human Rights Watch documented the cases of 11 girls between the ages of 14 and 17 who were receiving Electroconvulsive Therapy (ECT) in India. Human Rights Watch also documented the use of ECT on children in Indonesia, including in its unmodified form (without anesthesia, muscle relaxants, and oxygenation). Psychiatric hospitals in India do not make provision for taking the wishes of the child  into account, or for a child’s evolving capacities. This means that even if a child explicitly refuses to undergo ECT, the treating psychiatrist can still forcibly administer ECT as long as the institution has the consent of the child’s guardian and the hospital’s medical board. This falls short of India’s obligations under the United Nations Convention on the Rights of the Child (CRC) and the CRPD, which provide for taking into consideration the evolving capacities of a child to participate in decision-making.[47]

The World Health Organization Resource Book on Mental Health, Human Rights and Legislation states that ECT should only be administered in its modified form, , with informed consent, and that  “there are no indications for the use of ECT on minors [defined as anyone below the age of 18], and hence this should be prohibited through legislation.”[48]

The UN Special Rapporteur on Torture warned against involuntary treatment of persons with disabilities who “are particularly affected by forced medical interventions, and continue to be exposed to unwarranted non-consensual medical practices.”[49] The Special Rapporteur called a form of ill-treatment in health and social care detention settings “inappropriate medical care, including the use of psychoactive medication in children.”[50]  

In Serbia, Human Rights Watch documented that staff administer several kinds of medications, including psychotropic medications, to children with disabilities in institutions and small group homes, apparently as a means of dealing with behavioral issues, and without oversight or review to ensure that treatment is necessary and administered in line with the rights of children with disabilities to the highest attainable standards of health.[51]

Similarly, Human Rights Watch documented that children with intellectual disabilities in psychiatric hospitals in Ghana are given medication, even in cases when they do not need it. One nurse informed that “

while no one on current admission has a psychiatric condition, some of them receive psychotropic drugs because they are so restless. We don’t have access to alternative services that would stimulate these children. In any case, we lack the necessary skills to handle children with intellectual disabilities since we [were] train[ed] to deal with psychotic adult cases.[52]

In Russia, Human Rights Watch documented that staff in some state children’s institutions send children with disabilities to psychiatric hospitals as a form of punishment for “bad” behavior or for being too “active,” namely for running indoors, roughhousing with other children, or trying to leave their rooms or go outdoors.

One young woman with a developmental disability, aged 19, who grew up in a specialized state institution in Western Russia described her experience in a psychiatric hospital:

If you misbehave, then they give you pills to put you to sleep or they take you to Bogdanova. Bogdanova is a psychiatric hospital where there are bars on the windows. Staff there tie kids’ hands together and give them pills and injections . . . I felt very badly when I was there.[53]

A young man who grew up in a state institution exclusively for children with disabilities in northwest Russia said that he had been sent to a psychiatric hospital as punishment for being too “active.” He told Human Rights Watch that it was too painful to recount his treatment there. “It’s something I never want to talk about,” he said. He also described an incident involving another boy who was sent to a psychiatric hospital, apparently as punishment for running around his bedroom, contrary to the institution’s rules, explaining that when he came back from the hospital, the boy was  “drowsy, and he slept for days.”[54]

According to the American Academy of Child and Adolescent Psychiatry, the use of psychotropic medications in children and adolescents may lead to adverse effects on neurological development, personality, and character, as well as weight gain or movement disorder.[55] Alternative interventions to medications are especially important when there are serious side effects.

While international law recognizes that children can be given treatment on the consent of a parent or a guardian, Article 12 of the CRC also highlights the right of the child to be heard,[56] and “to express their views and to have such views seriously taken into account, based on age and maturity.”[57] The United Nations Committee on the Rights of the Child, in its General Comment on the right of the child to the enjoyment of the highest attainable standard of health, stated that Article 12 covers children’s own views on all aspects of their health, “including, for example, what services are needed, how and where they are best provided, […].”[58]

The Committee on the Rights of the Child further noted that children who are particularly vulnerable to discrimination are also often less able to exercise their autonomy to decision-making on their health issues.[59] The Committee recommended development and implementation of supportive policies so that “children, parents and health workers have adequate rights-based guidance on consent, assent and confidentiality.”[60] 

Finally, the Committee warned against over-medication  and institutionalization of children with psychosocial disabilities, urging governments “to undertake an approach based on public health and psychosocial support to address mental ill-health among children and adolescents and to invest in primary care approaches that facilitate the early detection and treatment of children’s psychosocial, emotional and mental problems.”[61]

Use of restraints and seclusion

Children with disabilities living in institutions are often subjected to  solitary confinement and prolonged use of restraints. Human Rights Watch documented that staff in many institutions in India, Indonesia, Greece, Russia, and Serbia frequently use physical and chemical restraints on children and confine children to cribs or caged beds. 

In Russia, Human Rights Watch found children with disabilities whose heads, arms, or torsos were bound by rags or clothing to cribs, wheelchairs or furniture in several institutions.[62] The consequences can be dire. In April 2014, a 7-year-old boy with a developmental disability died, apparently by choking on his own vomit, after a health worker in a state institution used cloth diapers to tie him to his bed.[63] Many children with disabilities are also confined to cribs nearly all day, every day, in so-called “lying-down” rooms in Russia or “wards for the most severely disabled” in Serbia. Rooms typically had 4 to 17 cribs. Staff provide these children with minimal time outdoors and  do not provide  opportunities for them to get up and walk or move around in wheelchairs.

In Greece, children with disabilities in one institution were tied to their beds or kept in wooden cage beds, apparently due to staff shortages.[64] There have also been alarming reports of deaths and allegations of abuse in care centers in Greece.[65] Human Rights Watch also documented the practice of shackling children as young as 5 —together with adults—in so-called  prayer camps (or spiritual healing centers) in Ghana. Children with real or perceived psychosocial disabilities, mostly girls, were tied to a tree or wooden post with a heavy metal chain, denied food, water, and shelter, and separated from their families.[66]

Children with disabilities living in some institutions are also often given powerful sedatives, a form of chemical restraint to control or punish behavior that staff deem undesirable. For example, institution staff in Russia stated that they typically administer sedatives to prevent children from banging their heads against crib railings or walls, or to prevent them from disrupting institution routines.[67] The situation is similar in Serbia, where institution staff, including medical staff, told Human Rights Watch that psychiatric drugs are in many cases prescribed to prevent children from harming themselves, behaving aggressively towards others, or to control children’s  behavior.

Denial of education

Children and young people with disabilities living in institutions often have little or no access to education. Children who do receive education attend specialized schools or classrooms only for children with disabilities. Some children receive education within their institutions.

Up to 60 percent of children with disabilities who live in Serbian institutions are not enrolled in school. “We put the television on or they spend their time in the workshop [drawing or learning life skills],” a caregiver  in an institution explained when describing how children spend their days.[68] Human Rights Watch researchers visited five institutions in Serbia during school hours and found a large number of primary and secondary school age children in the institution, rather than at school. In most cases, institution staff claimed that the children’s health was too fragile for them to be in school.[69] However, some institution staff recognized the exclusion of children with disabilities from education as problematic. “Not all children go to school every day,” one staff member said. “For example, there is this one boy who goes only once per week. It doesn’t make any sense to me, but that’s what the school decided.”

The higher support needs that a child with a disability living in an institution has, the lower the likelihood that he or she will be included in the education system. For example, in Serbia, staff in institutions often told Human Rights Watch that only children “with better prospects” will be included in schools and preschools. “Those deemed able to go to school are in school. First, we included the best children. We can’t include them all.” [70] The situation is similar in Russia, where many children with disabilities living in state institutions receive little or no education. It is particularly rare for children in “lying-down” rooms of specialized state children’s institutions to receive any form of education and, until recently, many of these children had been deemed “uneducatable.”[71] 

In three residential institutions visited in India, girls with psychosocial or intellectual disabilities were likewise not given adequate access to education.[72] Some girls with psychosocial or intellectual disabilities in two institutions attended non-formal classes within the institution or attend a local school. However, the curriculum in the schools is not adapted to their needs and and the children do not get specialized attention, limiting their learning.[73] In Japan, Human Rights Watch documented that children with disabilities living in institutions go to special schools exclusively for children with disabilities, depriving them of the opportunity to study with peers from their own communities.[74] Other children are placed in so-called short-term therapeutic institutions, which in many cases they cannot leave, not even for school.

The UN Special Rapporteur on Torture has stated that denying  children deprived of their liberty an education creates a  risk of abuse and ill-treatment.[75] Segregating children with disabilities in separate schools leads to greater marginalization within the community, a situation that people with disability face generally, thus entrenching discrimination.[76] Maiko W. lived in an institution in Japan and was sent to an elementary school and junior high school for children with disabilities, followed by a mainstream high school. He  said:

When I went to high school, it was the first time that I was living in the community. I realized there is so much information that I didn’t know. Certain values, certain ways of living, I just didn’t know. If we were integrated into the community, the exchange of ideas would be much better.[77]

 

Denial of regular contact with families

In his 2015 report, the Special Rapporteur on Torture noted that  “children deprived of their liberty are often not allowed to maintain regular contact with their families and friends.”[78] As of December 2014, 10,896 people with disabilities lived in institutions in Serbia[79] – most of them having entered the institution as children.[80] Few had contact with their families.

The CRC requires States to protect the rights of children separated from one or both parents to maintain regular contact with parents.[81] But in Russia, Human Rights Watch documented that staff in some institutions for children with disabilities either actively deny children’s contact with relatives or fail to take measures to facilitate such contact. Staff at two institutions in Russia reported  that they do not attempt to contact children’s parents and discourage visits, claiming that children tend to be “spoiled” by special treatment by their parents, and return from family visits prone to misbehavior. In St. Petersburg, a children’s rights activist, Alexander D., said that “some doctors [at specialized state institutions] tell parents not to visit because their presence upsets children.” 

Karina M., the mother of a 19-year-old man with a developmental disability who has spent his life in institutions in northwest Russia, said that institution staff sometimes prevented her from spending time with her son outside the grounds of the State orphanage where he lived, under the rationale that he would bring infections back into the institution.

Family separation is a problem for all children in institutions, but it is especially detrimental for infants (children under 2). In Japan, as of 2013, about 3,000 infants lived in infant care institutions. In fact, the vast majority of infants who require alternative care in Japan end up in institutions.[82] International standards set out that alternative care for young children under age 3 should be, almost without exception, in family-based settings, and many child development specialists suggest that infants are at risk for attachment disorder, developmental delays, and neural atrophy when in institutional care. One care worker in a Tokyo institution told Human Rights Watch that the infants housed there have no one to hold them when they cry at night, because of a shortage of staff.[83] 

 

What should be done instead 

All children, including children with disabilities, have the right to be cared for and raised by their parents and not to be separated from their parents, except when such separation is necessary for their best interests.[84] For example, not all families are safe, nurturing, and protective, and there are times when alternative family care or short-term state care for children may be necessary.  However, in cases where the immediate family is unable to care for a child with disability, the CRPD requires goverments to “undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting.”[85] The CRPD also states that “[i]n no case shall a child be separated from parents on the basis of a disability of either the child or both of the parents.”

Research has shown that placement of a child with a disability in segregated institutions rather than in an inclusive community is rarely, if ever, in their best interest. Most often parents, siblings, or other relatives, and in some cases foster and adopted families, provide children with the attention and support they need.

The Committee on the Rights of the Child reinforced this notion, articulating that children with disabilities “are best cared for and nurtured within their own family environment.”[86] The Committee has called on State parties to establish programs to deinstitutionalize children with disabilities and return them to their biological or extended families or place them in foster care, and to provide children’s families with the systematic support they may need to include children into their homes.[87]

Furthermore, article 25 of the CRC states: “when a child has been placed for the purposes of care or treatment, she/he has a right to a periodic review of treatment provided and all other circumstances relevant to the child’s placement.” Research by Human Rights Watch in Croatia, Ghana, Indonesia, Russia, and Serbia suggest that such reviews rarely take place.

The United Nations Guidelines for the Alternative Care of Children state that to meet the emotional, social, and other needs of each child living without parental care, States should take all necessary legislative, policy, and financial measures to provide for adequate alternative care options that grant priority to “family-and community-based solutions.”[88]

Young children, especially those under age 3, should receive care in family-based settings, except in emergency cases or to prevent the separation of siblings, when residential care should be for a limited duration and “with planned family reintegration or other appropriate long-term care solution as its outcome.”[89]

So, what needs to be done to assure that  children with disabilities are not locked up in institutions, but able to live in the community?

1[WU2] [EC3] . Prevent abuse. Governments around the world should take immediate steps to end abuse against children living in institutions and hold those responsible for treatment of children to account.  Isolation, psychological and physical abuse, sexual violence, inappropriate psychiatric treatments (including the inappropriate use of psychotropic medications as a means of dealing with behavioral issues), and discrimination against children with disabilities in institutions must end. This can achieved through training and sensitization of health workers, mental health professionals and staff in institutions on the rights and needs of children with disabilities and the development of confidential, accessible and effective mechanisms for children with disabilities in state institutions to report abuse without risk of repercussions. This includes informing children in an accessible manner about their rights and ways in which to file complaints and receive psychosocial support and legal assistance. States should ensure children’s complaints are reviewed and addressed promptly and impartially.

2. Prevent separation.  Governments should develop services in the community to prevent family separation. Services should include free local health-care and quality, inclusive schools, community day-care centers for children under school age, neonatal and postnatal services, family support services, financial assistance to families of children with disabilities, and parenting counseling, among others. Services should be flexible and respond to the individualized needs of children. Funding community care and support for children with disabilities in some European countries has been shown to be more cost-effective in the long term than funding large-scale institutions.[90] In Serbia, Human Rights Watch identified how existence of a family outreach service for children who are at risk of separation could help prevent separation.[91]

3. Reunite families. The majority of children with disabilities in institutions have at least one living parent. Reasons for separation include poverty, lack of access to health-care, access to education, and undue pressure by health-care professionals on parents to place their child with a disability in an institution. Adequate community-based services should be put in place as a  priority so children can return to live with their birth families. Developing an individual plan for each child’s exit from an instituion, including a plan on community-based support and services, could help facilitate the reunion.  

4. Provide alternative care. Where it is not in their best interests to return to their birth families, including in cases of abuse and neglect or when parents do not want to care for their child, children should be provided with an opportunity to live in a family-like environment with relatives, foster families, or adoptive parents. These potential caregivers should be carefully screened, trained, and monitored to ensure that the placement is protective and in the best interest of the child. Agencies responsible for foster care should work on strengthening and working with birth families so that they can meet their child’s needs and facilitate reunification.

5. Leave no one behind. The right to live in a family-like setting applies to all children with disabilities. No matter how high their support needs are, every child, without exception, has the right to live in the community. The development of services and support for children with disabilities and their families need to take into account children who require intensive support or may be at risk of remaining in institutions indefinitely. For example, states could institute a benefit for children who require intensive support – such as 24- hour personal care – to enable a parent to work. A parent who stays home and provides care for a child that requires intensive support should be able to be recognized as a caregiver of the child.

---

Children should not be isolated from their families or communities or denied the chance to learn and be with other children because they have a disability. Children with disabilities need to be included in communities and schools and not confined – in the name of “care,” “treatment,” or “rehabilitation” – to institutions where in reality they are at risk of irreversibly stunted physical, intellectual, emotional, and social development. This will require  a change in how governments invest their resources, which should be used to promote community-based services and support, instead of large-scale institutions. It will also require a change in attitudes to view children with disabilities as any other child, posessing the same rights and requiring the same amount of affection, inclusion and support. 


[1] UNICEF, “Progress for Children: A Report Card on Child Protection Number 8,” 2009; Pinheiro, P., World Report on Violence against Children, (New York, UNICEF, 2006).

[2] Republic Institute for Social Protection, Children in Social Welfare 2014 [In Serbian: Deca u sistemu socijalne zaštite], Belgrade, July 2015. p. 39. (Available in Serbian at):  http://www.zavodsz.gov.rs/PDF/izvestaj2015/DECA%20U%20SISTEMU%20SOCIJALN... (accessed September 1, 2016).

[3]  The UN Special Rapporteur on Torture has said that “deprivation of liberty” encompass “any form of detention, imprisonment, institutionalization or or custody of a person in a public or private institution which that person is not permitted to leave at will ... This category of persons includes ... those persons who are under the custody and supervision of certain institutions, such as: psychiatric hospitals and other establishments for persons with physical, mental or sensory disabilities; institutions for children and the elderly; centers for migrants, refugees, asylum or refugee status seekers, stateless and undocumented persons; and any other similar institution the purpose of which is to deprive persons of their liberty.”    UN General Assembly, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez (A/68/295), August 9, 2013, para 27.

[4] Berens, A. and Nelson, C., “The science of early adversity: is there a role for large institutions in the care of vulnerable children?” The Lancet (2015); UNICEF, “Violence against Children in Care and Justice Institutions,” undated, http://www.unicef.org/violencestudy/5.%20World%20Report%20on%20Violence%20against%20Children.pdf (accessed September 15, 2016).

[5] Marinus H. van Ijzendoorn et. al, “Children in Institutional Care: Delayed Development and Resilience,” Monographs of the Society for Research in Child Development, vol. 76, issue 4 (2001). Megan M. Julian and Robert B. McCall, “The Development of Children within Alternative Residential Care Enviornments”, 2009.

[6] Mulheir Georgette, “Deinstitutionalisation: a human rights priority for children with disabilities,” September 2012, http://www.equalrightstrust.org/ertdocumentbank/err9_mulheir.pdf (accessed April 30, 2016); Browne Kevin, “The risk of harm to young children in institutional care,” 2009, www.crin.org/en/docs/The_Risk_of_Harm.pdf (accessed April 30, 2016).

[7] Johnson R, Browne K, Hamilton-Giachritsis C., “Young children in institutional care at risk of harm,” https://www.crin.org/en/docs/The_Risk_of_Harm.pdf (accessed September 15, 2016); Nelson C, et al., “Cognitive recovery in socially deprived young children: the Bucharest early intervention project.” http://www.bucharestearlyinterventionproject.org/Nelson_et_al__combined_... (accessed May 17, 2016); Bos, K. et al., “Psychiatric outcomes in young children with a history of institutionalization,” 2011, http://www.bucharestearlyinterventionproject.org/Bos_et_al___2010_.pdf (accessed May 17, 2016).

[8] UNICEF, “Violence against Children in Care and Justice Institutions,” undated, http://www.unicef.org/violencestudy/5.%20World%20Report%20on%20Violence%20against%20Children.pdf

[9] Paulo Sergio Pinheiro, Independent Consultant, “World Report on Violence against Children,” United Nations Secretary-General’s Study on Violence against Children, 2006, http://www.unicef.org/violencestudy/reports.html (accessed September 15, 2016); Berens, A., Nelson, C., “The science of early adversity: is there a role for large institutions in the care of vulnerable children?”, The Lancet, 2015. UNICEF, “Violence against Children in Care and Justice Institutions,” undated, http://www.unicef.org/violencestudy/5.%20World%20Report%20on%20Violence%20against%20Children.pdf

[10] UNICEF,  “Promoting the rights of children with disabilities,” UNICEF Innocenti Digest 13, New York, 2009.

[11] Human Rights Watch interview with Spomenka Savic, social worker, Serbia, November 19, 2015.

[12] In 2003, data from 33 European countries suggested that 96% of institutionalized children had one or both living parents. Browne KD, Hamilton-Giacritsis CE, Johnson R, Chou S. Young children in institutional care in Europe. Early Childhood Maters 2005; 105; 15-18. See also: Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions,  June 8, 2016, https://www.hrw.org/news/2016/06/08/serbia-children-disabilities-neglected

[13] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions; Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, September 15, 2014, https://www.hrw.org/report/2014/09/15/abandoned-state/violence-neglect-and-isolation-children-disabilities-russian

[14] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, supra note 11, p. 33.

[15] Ibid, p. 34.

[18] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 66

[19] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 39; Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 70. Human Rights Watch, ‘Treated Worse Than Animals’: Abuses against Women and Girls with Psychosocial or Intellectual Disabilities in Institutions in India, p. 38.

[20] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institution,  pp. 38-39.

[21] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 23.

[22] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 27; Human Rights Watch, Treated Worse Than Animals, December 2014, https://www.hrw.org/report/2014/12/03/treated-worse-animals/abuses-against-women-and-girls-psychosocial-or-intellectual, p. 62.

[23] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 40.

[24] Ibid., p. 30. 

[25] Human Rights Watch, Treated Worse Than Animals, p. 10. 

[26] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 55, Human Rights Watch, Treated Worse Than Animals, p. 24, 73.

[27] In Ghana, prayer camps are privately owned Christian religious institutions with roots in the evangelical or pentecostal denominations established for purposes of prayer, counseling, and spiritual healing, and are involved in various charitable activities. The camps are run by prophets, many of them self-proclaimed. Some of these camps have units where persons with mental disabilities are admitted, and the prophets seek to heal persons with mental disabilities with prayer and traditional methods such as the application of various herbs. The prophets, or pastors, and staff at these camps have virtually no mental health care training. Human Rights Watch has not been able to ascertain the number of prayer camps in Ghana, but there is a general belief in the country that there are several hundred such camps, operating with virtually no government oversight. Human Rights Watch, ’Like a Death Sentence:’ Abuses against Persons with Mental Disabilities in Ghana, March 2, 2012,   https://www.hrw.org/report/2012/10/02/death-sentence/abuses-against-persons-mental-disabilities-ghana

[28] Jones, Lisa et al.,  “Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies”, The Lancet , Volume 380 , Issue 9845 , 899 – 907, 2012, http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60692-8/abstract World Health Organization, “Violence against adults and children with disabilities,” undated, http://www.who.int/disabilities/violence/en/ (accessed January 6, 2014); Department for International Development, Disability, Poverty and Development, February 2000, http://www.handicap-international.fr/bibliographie-handicap/4PolitiqueHandicap/hand_pauvrete/DFID_disability.pdf (accessed January 5, 2014), p. 3. The WHO has drawn attention to some limitations in the data; “this meta analysis uses data from every pertinent study that has been conducted on the subject (21 studies for prevalence and 10 studies for risk). While it is the best data available on the subject, the available studies do have methodological weaknesses and gaps exist in the types of disability and violence they address. Robust studies are absent for most regions in the world, particularly low-income and middle-income countries.”

[29] Sexuality education is not an integral part of the curriculum in mainstream Indian public schools although it was introduced in a limited way under ‘life skills’ training in some states.

[30] Healing centers are generally run by traditional or faith healers who practice “healing” techniques including chaining, Quranic recitation, night baths, herbal concoctions and rubbing the body with stones. Often an extension of the faith healer’s house or situated within the compound, these rudimentary centers primarily cater to people with psychosocial disabilities who are believed to be possessed by evil spirits or the devil, have sinned, displayed immoral behavior, or are thought to have lack of faith. Typically people in these centers have been forcibly placed there by their families or by the local police. Human Rights Watch, ’Living in Hell:’ Abuses against People with Psychosocial Disabilities in Indonesia, March 21 2016, https://www.hrw.org/report/2016/03/21/living-hell/abuses-against-people-psychosocial-disabilities-indonesia, p. 58.

[31] Human Rights Watch, Treated Worse Than Animals, pp. 66. 

[32]Human Rights Watch, Treated Worse Than Animals, pp. 69-70. 

[33] Human Rights Watch, Breaking the Silence: Child Sex Abuse in India, February 2013, http://www.hrw.org/sites/default/files/reports/india0113ForUpload.pdf , p. 4; Human Rights Watch, Broken System: Dysfunction, Abuse, and Impunity in the Indian Police, August 2009, http://www.hrw.org/sites/default/files/reports/india0809web.pdf , p. 9.

[34] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 48.

[35] Ibid.

[36] Ibid., p. 49.

[37] Human Rights Watch, Dispatches: Greece - No Excuse for Caging Children, November 18, 2014 https://www.hrw.org/news/2014/11/18/dispatches-greece-no-excuse-caging-children.   

[38] European Disability Forum and Human Rights Watch, Open Letter to Mr. Loverdos, Greek Minister of Health Regarding the living and care conditions at the Children’s Care Center of Lechaina, June 14, 2011, https://www.hrw.org/news/2011/06/14/open-letter-mr-loverdos-greek-minister-health#_edn1.

[39] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 52.  

[40] Ibid., p. 53. 

[41] Human Rights Watch, Treated Worse Than Animals, p. 52. Also see: The Hindu, “Halfway homes set to open in city”, August 8, 2016, http://www.thehindu.com/news/cities/Delhi/Halfway-homes-set-to-open-in-city/article14558426.ece (accessed December 15, 2016).

[42] Ibid, p. 49.

[43] Inge Bretherton, “The Origins of Attachment Theory: John Bowlby and Mary Ainsworth,” 1992, http://www.psychology.sunysb.edu/attachment/online/inge_origins.pdf  (accessed September 15, 2016).

[44] UN Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez (A/HRC/28/68), March 5, 2015, para. 56.

[45] Human Rights Watch, Treated Worse Than Animals, p. 62.

[46] Human Rights Watch, ’Living in Hell:’ Abuses against People with Psychosocial Disabilities in Indonesia, March 21 2016, https://www.hrw.org/report/2016/03/21/living-hell/abuses-against-people-psychosocial-disabilities-indonesia, p. 47. Human Rights Watch, ’Like a Death Sentence:’ Abuses against Persons with Mental Disabilities in Ghana, p. 56.

[47] Convention on the Rights of the Child (CRC), adopted November 20, 1989, G.A. Res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. A/44/49 (1989), entered into force September 2, 1990, art. 5, 14. Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, annex I, U.N. GAOR Supp. (No. 49) of 65, U.N. Doc. A/61/49 (2006), entered into force May 3, 2008, art. 3.

[48] World Health Organization, “Resource Book on Mental Health, Human Rights and Legislation,” 2005, http://www.who.int/mental_health/policy/resource_book_MHLeg.pdf 

[49] UN Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez (A/HRC/28/68), March 5, 2015, para 53.

[50] Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez (A/HRC/28/68), March 5, 2015, para 57.

[51] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 58. 

[52] Human Rights Watch, ’Like a Death Sentence:’ Abuses against Persons with Mental Disabilities in Ghana.

[53] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 37.

[54] Ibid.

[55] American Academy of Child and Adolescent Psychiatry, “Guide for Community Child Serving Agencies on psychotropic medications for children and adolescents,” February 2012, http://www.aacap.org/app_themes/aacap/docs/press/guide_for_community_chi... edications_for_children_and_adolescents_2012.pdf (accessed May 16, 2016).

[56] Convention on the Rights of the Child, Article 12.

[57] See General Comment No. 15 (2013) on the right of the child to the enjoyment of the highest attainable standard of health (art. 24), para 19.  See also general comment No. 12 (2009) on the right of the child to be heard, Official Records of the General Assembly, Sixty-fifth Session, Supplement No. 41 (A/65/41),

[58] See General Comment No. 15 (2013) on the right of the child to the enjoyment of the highest attainable standard of health (art. 24), para 19. 

[59] Ibid., para 21.

[60] Ibid.

[61] Ibid., para 38.

[62] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 31.

[63] Human Rights Watch, Dispatches: A Russian Orphan Dies While Tied to Bed, May 2, 2014, https://www.hrw.org/news/2014/05/02/dispatches-russian-orphan-dies-while-tied-bed p. 32.

[64] Human Rights Watch, Dispatches: Greece - No Excuse for Caging Children, https://www.hrw.org/news/2014/11/18/dispatches-greece-no-excuse-caging-children

[65] The Greek Ombudsman, “Summary of Findings: Functioning Conditions of the Social Care Center for Children with Disabilities, “Children’s Care Center of Lechaina,” March 2011, http://www.synigoros.gr/resources/docs/kepeplechaina2011.pdf (accessed September 15, 2016); Human Rights Watch, Open Letter to Mr. Loverdos, Greek Minister of Health: Regarding the Living and Care Conditions at the Children’s Center of Lechaina, June 14, 2011, https://www.hrw.org/news/2011/06/14/open-letter-mr-loverdos-greek-minister-health.

[66] Human Rights Watch met Victoria, a 10-year-old girl, who was shoeless and covered with dirt when researchers found her chained to a tree at Nyakumasi Prayer Camp in Ghana. Human Rights Watch, ’Like a Death Sentence:’ Abuses against Persons with Mental Disabilities in Ghana.

[67] Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 35.

[68] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions.

[69] Ibid., p. 70.

[70] Ibid., p. 68.

[71] Amendments to the Law on Education in 2013 eliminated the possibility of a child being diagnosed as “uneducable.” Human Rights Watch, Left Out? Obstacles to Education for People with Disabilities in Russia, September 1, 2015, https://www.hrw.org/report/2015/09/01/left-out/obstacles-education-people-disabilities-russia; Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, p. 55.

[72] Human Rights Watch, Treated Worse Than Animals, pp. 55-59.

[73] Ibid, p. 53.

[74] Human Rights Watch, Without Dreams: Children in Alternative Care in Japan, May 1, 2014, https://www.hrw.org/report/2014/05/01/without-dreams/children-alternative-care-japan.

[75] UN Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez (A/HRC/28/68), March 5, 2015, para 49.

[76] United Nations Human Rights Council, “The Right to Education of persons with disabilities: Report by the UN Special Rapporteur on the Right to Education Vernor Muñoz,” February 19, 2007, A/HRC/4/29, http://daccess-dds- ny.un.org/doc/UNDOC/GEN/G07/108/92/PDF/G0710892.pdf?OpenElement (accessed June 17, 2011).

[77] Human Rights Watch, Without Dreams: Children in Alternative Care in Japan.

[78] UN Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez (A/HRC/28/68), March 5, 2015, para 49.

[79]Republic Institute for Social Protection, “Adults in the system of social protection [In Serbian: Odrasli u sistemu socijalne zaštite],” July 2015, p. 37, (Available in Serbian at):  http://www.zavodsz.gov.rs/PDF/izvestaj2015/PUNOLETNI%20KORISNICI%20U%20SISTEMU%20SOCIJALNE%20ZASTITE.pdf (accessed January 13, 2016).   

[80] Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 25.

[81] Convention on the Rights of the Child, art. 9(3). An exception to this obligation is if such contact lies contrary to a child’s best interests. 

[82] Human Rights Watch, Without Dreams: Children in Alternative Care in Japan, p. 28.

[83] Ibid. 

[84] Ibid., art. 23 (4).

[85] Convention on the Rights of Persons with Disabilities, article 23, para 5.

[86] Convention on the Rights of the Child. General Comment No. 9: The rights of children with disabilities. Geneva: United Nations Committee on the Rights of the Child;2006; General Comment No. 7: Implementing child rights in early childhood. Geneva: United Nations Committee on the Rights of the Child; 2006.

[87] Convention on the Rights of the Child. General Comment No. 9: The rights of children with disabilities. Geneva: United Nations Committee on the Rights of the Child; 2006; para 49.

[88] UNICEF, “Guidelines for the Alternative Care of Children,” undated,  http://www.unicef.org/protection/alternative_care_Guidelines-English.pdf (accessed February 29, 2016), para. 53.

[89] Ibid., para 22.

[90]Costa M. De-institutionalization and quality alternative care for children in Europe: Lessons learned and the way forward. Eurochild Working Paper. 2006, http://www.eurochild.org/fileadmin/public/05_Library/Thematic_priorities/06_Children_in_Alternative_Care/Eurochild/DI_Lessons_Learned_web_use.pdf; Berens, A., Nelson, C., “The science of early adversity: is there a role for large institutions in the care of vulnerable children?,” The Lancet, 2015. 

[91] The Family Outreach Service in Serbia, developed by UNICEF in cooperation with the government and financed by the Novak Djokovic Foundation, provides support to families where there is a risk of separation of children from their families, including families for children with disabilities. ‪Family outreach workers visit families in their community and, depending on the needs of the child and the family, provide relevant practical support and assistance. This can include counseling, advocating for the rights of the child and the family with different agencies, assisting with administrative documentation necessary for families to receive financial support, obtaining health care, and enrolling children in kindergartens, day care centers, and schools. See more: Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institutions, p. 24.

 


 [WU1]Please specify: neglect by whom (in reference to situation prior to institutionalization/decision to institutionalize).

 [WU2]Some best practice examples to accompany these 5 steps would be a great addition to the article. 

 [EC3]Added – highlighted. 

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

(New York) – New Chinese government regulations encourage mainstream education for students with disabilities, but do not provide adequate pathways for achieving that aim, Human Rights Watch said today. On February 23, 2017, the Chinese government released long-awaited Regulations of Education of Persons with Disabilities to replace the out-of-date 1994 regulations.

A blind girl reads Braille text in her class at the Shanghai School for the Blind.

© 2007 Reuters/Nir Elias

The new regulations are unlikely to substantially change the current environment in which mainstream schools only admit children with physical disabilities or mild forms of other disabilities, and bar admission to many others. More positively, the regulations do mandate local governments to plan and allocate adequate funding and resources to the education of people with disabilities; stipulate teacher training, evaluation, and promotion; and require that schools develop individualized educational plans for students with disabilities.

“While international standards have influenced the new regulations, China still imposes discriminatory obstacles for children with disabilities to be placed in mainstream schools,” said Sophie Richardson, China director. “After nearly a decade to implement these standards, children with disabilities will still too often be segregated in a separate educational system.”

China’s Ministry of Education has long operated parallel systems of education for persons with disabilities: mainstream schools in which students with disabilities “study along with the class,” and special education schools in which students with disabilities are segregated according to types of disabilities. While state media reports say the revisions were aimed to fulfill China’s obligations under the United Nations Convention on the Rights of Persons with Disabilities, which it ratified in 2008, these practices are at odds with the convention, which require that governments “ensure an inclusive education system at all levels.”

In a 2013 report, Human Rights Watch found that even when students with disabilities were placed in mainstream schools, they were often given little accommodation or systematic support. In one case, a girl with intellectual and visual disabilities was placed in the back of the class, rather than the simple accommodation of seating her in the front where she could see the teacher and the board. Many students with disabilities find themselves in classrooms without adequate support and with little assistance from teachers to participate meaningfully in the curriculum or classroom activities. The failure of schools to provide reasonable accommodations to children regardless of their disability is discriminatory.

While international standards have influenced the new regulations, China still imposes discriminatory obstacles for children with disabilities to be placed in mainstream schools.

Sophie Richardson

China Director

In its General Comment No. 4 on the right to education, the UN Committee on the Rights of Persons with Disabilities specifies that integration, whereby children with disabilities are placed in mainstream schools without changes to curriculum, teaching, or learning strategies, does not constitute inclusion.

Although the new Chinese regulations affirm that mainstream education is the preferred method for students with disabilities (article 3), they also require that children with disabilities be evaluated by a quasi-governmental Expert Committee on the Education of Persons with Disabilities, and placed according to their “physical conditions and ability to be educated and adapt to [mainstream] schools” (articles 17-21).

Human Rights Watch’s 2013 report found that similarly vague standards allowed schools to arbitrarily deny admission to persons with disabilities. This is inconsistent with the convention, which obligates governments to ensure that “persons with disabilities are not excluded from the general education system on the basis of disability.” As the committee has stated, “the education system must provide a personalized educational response, rather than expecting the student to fit the system.”

An inclusive approach to education focuses on identifying and removing the barriers to learning, and changing practices in schools to provide “reasonable accommodation” to meet the diverse needs of individual students, including those with disabilities. “Reasonable accommodation” is defined in the Convention on the Rights of Persons with Disabilities as “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden.” Although China’s new regulations mention several times that students with disabilities should be “accommodated” (articles 22, 36, and 52), and in one instance use the term “reasonable accommodation” in reference to providing support during examinations, they fail to specify the kinds of accommodation or support these students are entitled to, making it difficult for parents and students to seek redress when such accommodation is not provided.

In practice, this may mean that students with, for example, a physical disability may still be barred from a mainstream school because of the school’s refusal to hold classes on the ground floor or have accessible toilet facilities inside the school.

The regulations state that higher education institutions “should admit those students with disabilities who meet the admission requirements of the state” (article 34). But the government still requires all students applying to universities to submit the results of a detailed physical examination, including having a disability, enabling the universities to discriminate against applicants with disabilities. A joint 2003 guidelines document issued by the Ministry of Education, the Ministry of Health, and the Chinese Disabled Persons Federation allows schools to reject candidates if they have certain categories of “physiological defects” or “mental disorders.” In one case documented by Human Rights Watch, a student with a visual disability was denied his top choice studying English because he failed the physical examinations. The Ministry of Education should repeal the Guidelines for the Physical Examination of Students in Recruitment for Ordinary Higher Level Educational Institutions that sanction disability-based discrimination in higher education.

In recent years, disability advocates have urged the Ministry of Education to provide reasonable accommodation during government exams, with success. There have also been cases of students with disabilities being admitted into universities after their rejections from other institutions were reported by the press.

“The Chinese government can’t claim victory in improving education for children with disabilities while still systematically discriminating against them in higher education,” Richardson said. “While China has taken some modest steps toward respecting the rights of children with disabilities, it still has a long way to go to meet its obligations under the convention.”

Posted: January 1, 1970, 12:00 am

This memorandum, submitted to the United Nations Committee on the Rights of Persons with Disabilities (“the Committee”), ahead of its review on Armenia, highlights areas of concern that Human Rights Watch hopes will inform the Committee’s consideration of the Armenian government’s compliance with the Convention on the Rights of Persons with Disabilities (“CRPD”).  This submission focuses on violations of the rights of children and young people with disabilities in Armenia, in particular articles 4, 5, 7, 8, 12, 14, 19, 22, 23, 24, 26, 28 of the CRPD. This submission proposes issues and questions that Committee members may wish to raise with the Armenian government as the Committee reviews Armenia’s compliance with its obligations under the CRPD.

This submission draws primarily on Human Rights Watch‘s research in 2016 in eight cities in Armenia, including visits to five state-run orphanages and ten state-run schools, including six special schools and four mainstream schools, and interviews with 173 people. We interviewed 47 children and young adults, and 63 families of children living in orphanages, attending special schools or attending mainstream schools. We also interviewed directors of orphanages, special schools, and mainstream schools, as well as social workers, doctors, teachers, psychologists, caregivers, and other staff in institutions. The information in this report is based on material that is published in the report by Human Rights Watch titled When Will I Get to Go Home?: Abuses and Discrimination against Children in Institutions and Lack of Access to Quality Inclusive Education in Armenia.

1. Children and Young People in State Institutions

Background

Many children in Armenia in orphanages and other residential institutions end up there because they have disabilities. There are three types of state residential institutions in Armenia: orphanages, residential special schools, and night boarding institutions. As of April 2016, there were nearly 3,700 children with and without disabilities in residential institutions in Armenia. Ninety percent of these children have at least one living parent. 

There are six state-run orphanages in Armenia: three generalized orphanages where primarily children without disabilities live, and three specialized orphanages for children with disabilities. According to UNICEF, of 670 children residing in orphanages in May 2016, 70 percent have disabilities. According to the Ministry of Education and the Ministry of Territorial Affairs and Administration, as of December 2016, there were 20 residential special schools in Armenia, with most having both children with and without disabilities enrolled.

Discrimination in the deinstitutionalization process

The government of Armenia is currently undertaking some important reforms regarding children in institutions, including reducing the number of children in state-run residential institutions and moving these children back to their families. However, the government appears to prioritize the return of children without disabilities to their families. Thus, although the total number of children in orphanages is decreasing, the concentration of children with disabilities, in particular children with multiple disabilities, mobility disabilities, or high support needs in orphanages is increasing. For example, at the time of Human Rights Watch’s visit to the Kharberd specialized orphanage in May 2016, there were 221 residents, including 94 children and 127 young adults. Half of the residents are wheelchair users. Thirty-six children have visual and multiple disabilities, only two of whom have been taught to use a cane as a mobility tool.

Furthermore, the government has stated it plans to transform three generalized orphanages for children without disabilities into community-based support centers, but has made no commitments to transform or close the three orphanages where children with disabilities reside, and continues to invest in these institutions. This approach exacerbates the overrepresentation of children with disabilities in institutional care and is discriminatory.

Moving children between institutions instead of to families; no decrease in numbers of children with disabilities in institutions

Human Rights Watch found substantial evidence of children with disabilities being moved out of one orphanage or institution, only to be placed in another institution. In some cases, when children have returned to their birth families from an orphanage, they are then enrolled in a residential special school.

Directors of orphanages for children with disabilities reported that there is a large demand to place children in the orphanages. The three specialized orphanages, which are not scheduled for transformation, face overcrowding and, in some cases, waiting lists for children to enter. Thus, even when the institution is able to return children to their families or find alternative care solutions, or if the orphanage transfers children to another institution, more children quickly take the vacant places. The total population of children with disabilities in institutions is not decreasing.

Children who grow up in institutions remain in institutions as adults

For example, in response to the presence of many young adults in orphanages for children with disabilities, in 2015, the government converted a night boarding institution for children into the Zorag Psychiatric Care Center in Yerevan. Residents included people with psychosocial, intellectual, sensory, and other disabilities. According to the Zorag director, as of December 2016, the institution had 120 residents. Planned renovations will allow the institution to hold up to 200. In a December 2016 interview, the Zorag director told Human Rights Watch that the center’s residents “will never go anywhere else. They will remain in this institution for their whole lives.”

Denial of legal capacity

Armenian law guarantees every person who turns 18 the right to full legal capacity.[1] However, upon reaching adulthood, a person with intellectual or psychosocial disabilities can be deprived of legal capacity by a court decision, and the court identifies a guardian for this person to take decisions on his or her behalf.[2] There is no mechanism for partial deprivation of legal capacity for persons with intellectual and psychosocial disabilities in Armenia.[3] Supported decision making institutions do not exist in Armenia.

Children with disabilities who age out of institutions for children may remain in institutions indefinitely due to the lack of alternatives in the community, as well as officials’ failure to ensure that all young people with disabilities have the right to exercise their legal capacity when they turn 18. Human Rights Watch found that authorities may deprive individuals with intellectual and psychosocial disabilities of legal capacity upon reaching adulthood, so that an individual’s guardian, which can be an orphanage or an institution, continues to make all legal and other decisions for them even as adults. The forced confinement of adults in institutions without their consent can be a form of arbitrary detention.

In contrast, staff at a generalized orphanage, where only children without disabilities live, stated clearly that upon reaching 18, children have full legal capacity and the orphanage respects the law in this regard.

Problems in institutions

Even in the most well-resourced residential institutions in Armenia, children face isolation, the lack of individual attention and nurture, a lack of privacy, emotional distress due to family separation and a lack of preparation to lead individual lives as adults.  

  • In residential institutions, children are typically divided into groups of between 10-17 children, with two caregivers.
    • Even the most dedicated and caring staff are challenged to provide individualized care and attention.
    • The organization of children into large groups also leads to a lack of privacy, with older children and young adults sleeping in bedrooms with up to 13 others.
  • Children placed in institutions and their parents consistently reported that being separated from each other takes an emotional toll on them. Children often show symptoms of emotional and sometimes physical distress due to the separation from their families. Children may cry, refuse to eat, and experience poor moods and anxiety.
  • Residential institutions do little to prepare children to live on their own once they become adults.

Lack of services in the community drives placement of children with disabilities in institutions

Human Rights Watch research found that trained staff and specialized services for children with disabilities such as rehabilitation are available only to children living in institutions, rather than in the community. Concentrating services for children with disabilities in institutions rather than in the community contributes to many families’ decisions to place children in institutions. It also means that many children with disabilities who remain with their families and who may require or benefit from certain services and resources are often unable to access them. The continued concentration of resources within institutions will have a disproportionate effect on children with disabilities, both those who live inside them and those who live in the community.

Lack of foster care and adoption

Alternative child care services in Armenia remain underdeveloped, even as the government is moving to transform residential institutions into centers providing community-based services, in some cases very quickly, and ostensibly prioritize family-based care. There is a risk of harm to children should the government move children out of residential institutions without alternative care solutions sufficient in quantity and quality. There are currently a total of 23 foster care families in all of Armenia. Currently, the national budget provides financial support for only 25 families annually. As this includes families already serving as foster parents, there is not currently budget capacity to support more foster families. 

In the absence of sufficient alternative care solutions, referral to residential institutions remains the only resort in the overwhelming majority of cases in which remaining in or returning to the biological family is not possible or not in a child’s best interest.

Under Armenian law, for a child to be placed in foster care, the child’s parents have to relinquish their parental rights, which impedes the possibilities for many children to be moved out of institutions and into alternative care, or for children to be placed in foster care as a temporary measure, rather than in an institution.[4] Amendments to the family code would eliminate the requirement for parents to have relinquished their parental rights in order for children to be eligible for foster care placement. The amendments have been under review by several government ministries for many months, but at time of writing have not been sent to parliament.

Continued concentration of resources in buildings

UNICEF maintains that the financial support allocated to support children in institutions in Armenia, currently between US$3,000 and 5,000 per year per child, can be reallocated to community-based services and direct support to families and that these types of support in the long term require less budgetary expenditure.[5] A UNICEF study analyzing the costs of institutions in Armenia in contrast to community-based services determined that “services of residential institutions are very expensive.” The report also found “the reallocation of children into family care does not necessarily lead to the creation of an additional burden on the state budget” and that, “on the contrary, depending on the policy chosen, the savings can be quite tangible, even if the reform costs include the provision of jobs to excessive staff of the discharged residential institutions and additional social support and care services for children released from residential institutions, and their families.”[6]

Questions and recommendations

Human Rights Watch encourages the Committee to ask the government of Armenia:

·         What specific steps is the government taking to promote deinstitutionalization of children with disabilities on an equal basis with other children, and to guarantee that policies and practices on deinstitutionalization do not discriminate against children on the basis of disability, on the type of disability or high support needs?

  • What is the government doing to ensure that people with intellectual or psychosocial disabilities are not denied their legal capacity and placed in institutions in circumstances, which could amount to arbitrary deprivation of liberty?
  • How many individuals living in institutions for adults with disabilities have their legal capacity?
  • Will the government commit to replacing legal provisions that permit persons with intellectual or psychosocial disabilities to be denied full legal capacity and placed under full guardianship, with a system of assisted decision-making?

·         What specific steps is the government taking to ensure that financial and other resources allocated to institutions are truly decentralized and redirected to the establishment of community-based services, and do not remain exclusively in transformed institutions?

·         What steps is the government taking to introduce in parliament legislative amendments to the Family Code that would facilitate more foster care and adoption?

·         What steps is the government taking to ensure that there is sufficient budgetary support to support more than 25 foster families?

Human Rights Watch encourages the Committee to make the following recommendations to the government of Armenia:

  • Deter any new long-term placements of children in residential institutions;
  • Establish a time-bound plan to end the institutionalization of children;
  • End discrimination against children with disabilities in the deinstitutionalization process;
  • Recognize involuntary hospitalization or institutionalization based on the existence of a disability as a form of discrimination and without consent of the individual as a form of arbitrary detention;
  • Ensure that financial and other resources allocated to institutions are decentralized and redirected to community-based services, and do not remain exclusively in transformed institutions;
  • Ensure that foster care and adoption systems are fully functional by the time children are moved out of residential institutions;
  • Ensure that systems promoting and implementing foster care and adoption take specific measures to ensure children with disabilities are placed in foster and adoptive families on an equal basis with children without disabilities;
  • Establish and maintain a range of targeted, accessible, diversified community-based services for families in difficult situations, as well as for individuals, including children with disabilities and their families, to prevent institutionalization and to support families to raise their children at home.

2. Lack of Access to Quality Inclusive Education

Background

The Armenian government has committed to making all primary and secondary schools (compulsory education, grades 1 to 12) inclusive of children with disabilities by 2022. According to the Ministry of Education, for the 2016-2017 school year, 6,700 children with “special educational needs” are enrolled in mainstream schools providing inclusive education.

Lack of reasonable accommodations

Human Rights Watch found that children with disabilities, including those in mainstream schools designated as “inclusive”, often do not receive a quality education on an equal basis with others. Schools in Armenia rarely provide sufficient reasonable accommodations to facilitate the learning of each child with a disability. The lack of reasonable accommodations, include, but are not limited to, the absence of basic physical accessibility in educational buildings; a lack of accessible sanitary facilities; and a lack of accommodations for children with sensory disabilities. A lack of an individualized approach to education and social development impedes the ability of many children with disabilities to enjoy a quality education.

Human Rights Watch spoke with numerous parents of children with disabilities enrolled in inclusive community schools who remained with their children in the classroom to support him or her because of the absence of reasonable accommodations to support the child’s learning needs and full inclusion in the school and classroom. In most cases, this was the child’s mother. This can impede children’s inclusion and can disrupt family life, including a parent’s ability to secure paid employment or care for other children. Parents frequently referred to certain behaviors or features related to the child’s disability, such as an inability to speak, write, move independently, sit still for extended periods of time, or sit without support, which many schools would not accommodate, as the main reason for staying with their child at school, or opting for a special school (see below).

Separate and irregular education

Despite attending so-called inclusive schools, many children with disabilities do not attend classes with other children or are present in classrooms but do not participate in the academic curriculum. Their education often consists of primarily or exclusively one hour or shorter sessions once or a few times a week with specialists employed at the school: typically, a speech therapist, psychologist, and social worker.

In addition, children with disabilities enrolled in “inclusive” mainstream schools and in special schools may attend school for only a few hours a day, or not all days of the week, due to the lack of reasonable accommodations or other obstacles, such as lack of accessibility in apartments or in public transportation which makes it difficult for them to regularly attend school. 

Lack of sufficient staff, including as a component of reasonable accommodation

Inclusive community schools and special schools often lack sufficient staff, in particular aides who can provide direct support to one or more children. Teachers’ assistants are being introduced to every inclusive school, at a ratio of one per 100 children. The teacher’s assistant’s role is to support teachers in organizing the education of every child with educational support needs, including implementation of the child’s individual education plan, facilitating contacts with families, and providing additional courses to children after school. This position is not designed to provide direct academic, self-care, or other support children with disabilities.

Special schools and separation from families and the community

Some parents continue to opt for special schools for their children with disabilities, in search of smaller class sizes and more individualized approaches. Armenian law protects the right of parents to choose to send their children to a special school. However, these schools may be located far from their homes, and often require children to live at the school full-time or during the school week, may not provide a quality education, and inhibit children’s full inclusion in the community.

Home education, not a quality education

Human Rights Watch also found that children with disabilities may be relegated to home education, due to problems with accessibility in schools, homes, and in the community as well as schools’ failure to provide reasonable accommodation. With home education, teachers from local schools visit children at home and provide a few hours of basic literacy and numeracy instruction per week, in mathematics, Armenian language and Russian language, which does not constitute a quality education. These children typically have little or no interaction with classmates or other peers.

Stigma and discrimination

Numerous children with disabilities and their parents said stigma was an obstacle to receiving a quality inclusive education. Parents of children with disabilities described instances of harassment and bullying of their children who attended mainstream schools. Other parents declined to send their children to mainstream schools, or to school at all, or placed their children in institutions due to fears of stigma.

Questions and recommendations

Human Rights Watch encourages the Committee to ask the government of Armenia:

·         What steps is the government taking to minimize the removal of children with disabilities from classrooms for separate coursework?

·         What steps is the government taking to consistently ensure the provision of reasonable accommodations for each child with a disability, including low-cost accommodations, classroom-based personnel to support children who require individualized attention to facilitate their learning, time-bound plans to improve physical accessibility in schools, and other relevant measures? 

·         What steps is the government taking to reduce stigma and discrimination against people with disabilities in schools and communities?

·         What steps is the government taking to reduce the number of children receiving home education, including by working with municipal governments to address accessibility obstacles in the community?

Human Rights Watch encourages the Committee to make the following recommendations to the government of Armenia:

  • Implement inclusive education at all levels in such a way as to achieve maximum inclusion of children with disabilities, including children with high support needs, in mainstream schools;
  • In schools, minimize the removal of children with disabilities from classrooms for separate coursework. While some children may require certain individual or small group coursework, these classes should maximize children’s academic and social development and should not be a replacement for children’s full participation in the classroom;
  • Ensure there are sufficient and trained staff in classrooms, including by ensuring sufficient financial support for assistant teachers and student aides at a ratio that promotes inclusion;
  • Collect comprehensive data on and take steps to reduce the number of children receiving home education or receiving no education and ensure reasonable accommodations for them to study in community schools.
 

[1] Civil Code, art, 24(1).

[2] Ibid., art. 31(1).

[3] Ibid., art. 32. Reasons for partial deprivation of legal capacity include only addiction to alcohol, narcotics, or gambling.

[4] Human Rights Watch telephone interview with Arsen Stepanyan, November 2, 2016. The government piloted a 10-year foster care program in Armenia, with 13 foster families, but the project was discontinued due to lack of funding.

[5] Human Rights Watch interview with Tanja Radocaj, Artak Shakaryan, and George Abadjian, UNICEF, April 12, 2016.

[6] UNICEF, “Towards Alternative Child Care Services in Armenia: Costing Residential Care Institutions and Community Based Services.”

Posted: January 1, 1970, 12:00 am

The day I met Julija she was playing cheerfully with her baby sister on the floor inside their room in Kragujevac, a small town in southern Serbia. When she saw me – a stranger — on the doorstep, she smiled widely and stretched out her hands, offering a hug. As I held her, I could hear how difficult it was for her to breathe. I looked at her, she smiled and touched my face with her hands and only then did I see that Julija’s fingers were webbed.

Julija was born with Apert Syndrome, a rare genetic condition. Children with this syndrome have fused skull bones, resulting in distorted facial features, vision and hearing loss, trouble with breathing and eating, and learning difficulties. In Julija’s case her fingers and toes were not separated either, which made holding a spoon or picking things up difficult.

Her parents – Jasmina and Ivica – told me about their struggle to provide Julija with the health care she needed to stay alive and to develop. For three months following Julija’s birth in 2012, her parents used every penny they had to ferry their daughter across the country in search of specialists who could help. The repeated advice they received was not helpful: Place your child in an institution. It’s best for you and her. “One doctor even told us that it will be a torment for us to keep her with us and that we might not get anything back in return,” Jasmina told me. “As if my child was a burden for me. None of these doctors were thinking about what is best for the child.”

Julija Čuković, who spent ten months of her life in an institution, at home in Kragujevac with her parents, where she enjoys to play with her younger sister, also in the photo. 

© 2016 Zoran Stamenković

By the time she was barely older than 3 months, Julija had undergone surgery twice on her head and had spent a month in intensive care with pneumonia. Because of her severe breathing problems and her need for frequent specialist treatment that Julija could not receive in her hometown, her parents decided, with heavy hearts, to place her in an institution for children with disabilities in Belgrade, Serbia’s capital, where she would have access to emergency care.

However, after only two days, her parents noticed a drastic change in Julija’s spirit. “She was no longer the child she used to be,” Jasmina told me.

After Julija spent 10 months in the institution with only short visits home, Jasmina and Ivica decided to bring her  back home. “When Julija is at home with us, she is one child, and when she is in an institution, she is a different child,” Jasmina said. “She has made much more progress [at home], in terms of her weight and everything else. Her intellectual development, too.”

With Julija back home, her parents worked tirelessly to find help. Ultimately, a relative in Australia made contact with a specialist at the Australian Craniofacial Unit in Adelaide. Supported by private fund raising efforts and the unit itself, in 2015, Juljia underwent life-changing surgery to reshape her skull to make more room for her brain.

When I met Julija in November 2015, surrounded by her loving parents, toys, and a baby sister, she was thriving and happy. Her parents told me she had put on weight and learned to sit, which she was unable to do when her parents brought her back from the institution. A few months after my visit she learned to walk  on her own. In November 2016, her fingers were unwebbed in a hospital in Belgrade. A child’s ability to access health care needed for survival and development should not have to depend on their parent’s ability to fight for it. Every child has a right to health and health services.

However, Julija’s journey has only just begun. She will need professional support to learn to use her fingers. Her teeth are not growing properly. She still needs another facial and skull operation. She understands everything, her parents told me, but she doesn’t speak yet. And her breathing and her eyes have to be managed constantly.

Julija was not the only child I met in Serbia who was struggling to get much-needed health care. Hundreds of children with developmental disabilities, the majority of whom have a living parent,  are placed in large residential institutions where  they are separated from their families.  Unlike Julija, they don’t have someone who is working tirelessly to ensure their lives are the very best they can be. Instead, they are often neglected because there is not enough staff, and in some cases confined to beds for their entire lives, without any stimulation. Long-term placement of children in institutions leads to  stunted physical, intellectual, emotional, and social development.

A child’s ability to access health care needed for survival and development should not have to depend on their parent’s ability to fight for it. Every child has a right to health and health services.

On February 28, more than 80 countries worldwide are marking the tenth international Rare Disease Day, including Serbia. The Serbian government – and every government around the world– should mark this day by committing to provide all children with disabilities access to the health care they need to stay alive and to grow and develop just like other children. Julija – who was deemed a hopeless case at birth – just celebrated her fifth birthday with family and friends.

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

Introduction

This memorandum highlights some areas of concern that Human Rights Watch hopes will inform the Committee’s consideration of the Moroccan government’s compliance with the Convention on the Rights of Persons with Disabilities (CRPD) ahead of the Committee’s upcoming pre-sessional working group review. This submission discusses violations of the rights of persons with disabilities in Morocco under Articles 6, 12, 19 and 24 of the CRPD.

This submission draws from ongoing monitoring on the human rights situation in Morocco by Human Rights Watch, analysis of relevant Moroccan laws that specifically address disability rights, studies and reports conducted by different UN bodies and NGOs, and our interviews and meetings with government officials and other stakeholders in Morocco, including leaders of disability rights organizations, disabled persons organizations, persons with disabilities and their families, members of independent human rights associations, the National Council on Human Rights (CNDH) and the Economic and Social Council.

In February 2016, the Moroccan Parliament adopted Framework Law 97-13 on the rights of persons with disabilities[1], a step toward harmonizing legislation with the Convention on the Rights of Persons with Disabilities (CRPD), which Morocco ratified in 2009. However, the Framework Law falls short in some areas, such as in guaranteeing access to inclusive education for children with disabilities, and in affirming the right of legal capacity.

In your upcoming adoption of list of issues on Morocco, Human Rights Watch urges you to question the government of Morocco about the following key issues:

  1. Legal Capacity
  2. Education
  3. Institutionalization
  4. Women with Disabilities
  1. Legal Capacity (Article 12)

Although Article 18 of Framework Law 97.13 provides for persons with disabilities to "enjoy full capacity to exercise their civil and political liberties and rights," it qualifies this by stating that this capacity should only be recognized "in accordance with the conditions set forth by law."[2]

The current "conditions set forth by law" in Morocco do not yet conform with Article 12 of the CRPD. For instance, the Family Code of Morocco indicates that persons with disabilities, particularly intellectual or psychosocial disabilities,[3] may be deprived of their functional legal capacity – including the ability to exercise personal and financial rights – and put under guardianship.[4] Individuals with intellectual or psychosocial disabilities are deprived of legal capacity when they turn 18 based solely on examination by a doctor and without a formal legal process.  

In cases when someone acquires a disability as an adult, a court may deprive these individuals of their legal capacity and assign a guardian or family member to make decisions for them.[5] The person with disability can challenge this assignment in court but must demonstrate that they are of “sound mind” in order to do so.[6]

Without legal capacity, people with disabilities experience severe limitations to exercise their rights under Moroccan law. For instance, the Moroccan Code of Obligations and Contracts requires the consent of a guardian for people deprived of legal capacity, thus limiting opportunities for employment, to control finances, or to enter into other agreements.[7] The Family Code of Morocco states that all actions taken by persons deprived of legal capacity are null and without effect unless specifically allowed by the court when depriving them of capacity, thus limiting almost every opportunity for these individuals to exercise their rights.[8]

We welcome reports that the government plans to amend the Civil Code, including the Family Code and the Code of Contracts, in line with an overhaul of domestic law.[9] It is unclear, however, what the timeline will be for such amendments and whether these amendments will ensure the right to legal capacity for persons with disabilities in line with the CRPD. And although the Constitution of Morocco protects persons with disabilities from discrimination, it is unclear whether this would extend to ensuring their full rights under Article 12 of the CRPD and thus influence the interpretation of the Framework Law.

In your upcoming pre-sessional review on Morocco, we urge the Committee to ask the government of Morocco about the following issues:

  • How many persons with disabilities are currently living under guardianship in Morocco?
  • What is the timeline to amend the Civil Code, including the Family Code and the Code of Obligations and Contracts and how will the government ensure that these amendments will be in line with the CRPD, especially with regard to legal capacity?
  • What mechanisms are in place to protect persons with disabilities from abuse, exploitation and/or neglect in situations where their decisions, choices and preferences are substituted with those of their guardians? Have any cases of abuse of power been raised so far and what outcome has been achieved?
  • Does the government of Morocco have any plans to move toward a supported decision-making model? What barriers does the government face in implementing the right to legal capacity, including supported decision-making, and what measures is it planning to overcome those barriers?

 

  1. Education (Article 24)

According to the Ministry of Solidarity, Women, Family and Social Development’s National Study on Disability 2014[10], only 41.8 percent of children with disabilities aged 6 to 17 are enrolled in school.  The 2014 census by the High Commission for Planning found that 66.5 percent of people with disabilities have had no schooling at all, compared to 35.3 percent of the general population.[11]

The Ministry of Education has issued circulars and memorandums requiring schools to ensure the inclusion of children with disabilities in mainstream schools and classrooms.[12] However, these children continue to face barriers.

A 2014 study by Handicap International[13] on access to education for children with disabilities in the Souss Massa Drâa region found that children with disabilities were often denied access to education. Children with disabilities experienced a number of barriers in accessing school: stigma, ignorance and negative attitudes among the population, inaccessible education programs and school environments, and lack of inclusive education policies at the national level.

The state report to the Committee also identifies a number of difficulties hindering children with disabilities’ access to education, including the insufficient number of specialized teaching staff, negative attitudes of families, and the long distances children with disabilities have to travel to reach integrated classes.[14]

The state report indicated that as of 2013, about 555 integrated classes had been established in 383 educational institutions, benefitting more than 8,000 students.[15] However, these integrated classes, managed primarily by civil society, raise a number of concerns.[16] According to non-governmental organizations, the classes are mostly concentrated in urban areas and do not include children with disabilities in the education system beyond primary school.[17] UNICEF notes that the number of integrated classes is too low, that State support and resources allocated to these classes are insufficient, and that monitoring and quality assessment are lacking.[18]

In addition, while integrated classes have been set up, according to UNICEF, “ordinary establishments are not accessible and do not have adequate planning.”[19]

Families of children with autism and intellectual disabilities in Morocco reported to Human Rights Watch that they had significant problems integrating their children into mainstream schools, including objections from schools and teachers about having assistants in the classroom assigned to work with students with disabilities. They also raised concerns about the quality of education their children receive in special classes or in mainstream classes without assistants and about the lack of government support for providing reasonable accommodations for their children in mainstream classes.[20]

Additionally, some non-governmental organizations are providing a significant amount of support to children with disabilities in school – including by training, paying, and providing learning assistants for children with autism or intellectual disabilities and running parallel classrooms for these children – at their own expense or at the expense of families and with little or no government support for these services.[21] This has meant that families with sufficient financial and other means are more likely to be able to provide instructional support for their children, leaving many children with disabilities behind.

In 2014, the Committee on the Rights of the Child supported these concerns in their concluding observations, stating: “The State party has not engaged in building an inclusive system of education and continues to over-rely on non-governmental organizations to provide specialized services to these children.”[22]

While the Framework Law 97.13 guarantees people with disabilities the right to education, it may be interpreted to limit their access to inclusive education. Indeed Article 12 mandates the creation of separate institutions for education and training of persons with disabilities who are unable to pursue their education and training at other institutions.[23] This may promote continued segregation of children with intellectual or other disabilities, contribute to stigma surrounding disability, and deny these children the right to an education with their peers.

We urge you to question the Moroccan government in your upcoming pre-sessional review about the following key issues:

  • How is the government addressing obstacles hindering children with disabilities’ access to inclusive education, including the insufficient number of specialized teaching staff, negative attitudes of families, and the long distances children with disabilities have to travel to reach integrated classes?
  • What steps does the government plan to take to ensure provision of reasonable accommodation and make educational environments and curricula accessible for students with all types of disabilities, including in rural areas?
  • Do parents and children with disabilities who are denied access to education or reasonable accommodation have access to a reporting mechanism to ensure accountability?

 

 

  1. Institutionalization (Article 19)

Children with disabilities are overrepresented in institutions accommodating children who have been abandoned. A 2010 study on abandoned children in Morocco by UNICEF and the National League for Child Protection found that 18.5 percent of abandoned children had disabilities, and specified that this figure should be considered as incomplete.[24] Children with disabilities living in institutions for abandoned children were very unlikely to be adopted, and therefore could spend their entire lives in these institutions, which recognize that they do not have the necessary resources to adequately take care of children with disabilities.[25]

According to a study by Handicap International, cited by UNICEF, “children with disabilities who have been abandoned in institutions are victims of great discrimination in all spheres of society, often because of their status as children of unmarried mothers.”[26] In addition to being affected by general consequences of living in an institution that often harms the healthy and natural development of children,[27] according to this study, as cited by the daily newspaper L’Opinion, children with disabilities abandoned in institutions were more intensely affected by the inadequate conditions in the institution, leading to a deterioration of their physical and mental health. In particular, human resources in institutions were said to be insufficient, and physical infrastructures were not adapted to the need of children with disabilities, access to healthcare was inadequate, and 80 percent of these children did not attend school.[28]

The state report does not provide information on measures addressing the rights and needs of children with disabilities in institutions, beyond the care provided in hospital nurseries for abandoned children under the age of six years and in one center for abandoned children in Rabat.[29] The report does not provide details on any measures to ensure that children and adults with disabilities can live in the community.

We urge you to question the Moroccan government in your upcoming pre-sessional review about the following key issues:

  • What steps is the government taking to collect data on children with disabilities who have been abandoned in institutions?
  • How is the government supporting children with disabilities who have been abandoned in institutions to ensure they have access to their basic rights, including health, education and the right to live in the community?
  • Does the government have any plan to deinstitutionalize children with disabilities and transfer them to forms of alternative family care that respect their rights and dignity?

 

  1. Women with Disabilities (Article 6)

Women and girls with disabilities are particularly marginalized in Morocco. For example, according to the 2014 census,[30] 79.5 percent of women with disabilities had no level of education (compared to 53.4 percent of men with disabilities). Women with disabilities’ employment rate is particularly low: from 27 percent of persons with disabilities who declared having some form of permanent or temporary professional occupation, only 11.4 percent of them were women.[31]

Organizations of persons with disabilities have raised concerns that women with disabilities, especially intellectual disabilities, are particularly susceptible to violence.[32] This ranges from psychological violence to sexual abuse, often committed by a relative or friend.  There is no official data available on the number of women with disabilities who are victims of violence.

According to the Association of Parents and Friends of People with Mental Disabilities (HADAF), while efforts have been made to respond to violence against women in general, violence against women with disabilities has so far been neglected and ignored. Women with disabilities who are victims of violence are not taken seriously and lack access to assistance and justice.[33]

The state report reads: “The units established in all the country’s courts to cater for the needs of female and child victims of violence are endeavouring to ensure that persons with disabilities have access to all the services and resources provided to prevent violence and help victims to notify the competent judicial or administrative authorities of any cases of violence or ill-treatment committed against minors or adult women without the need to obtain their consent if they are in a serious condition or in a condition, such as mental disability, which prevents them from expressing their consent.”[34] While ensuring that women and girls with disabilities enjoy access to these services and resources is a commendable goal, women and girls with disabilities’ right to informed consent should be upheld in all circumstances.

On March 17, 2016, the government of Morocco adopted a revised bill on combatting violence against women (Bill 103-13) passed by the House of Representatives on July 20, 2016. Despite this positive step, the bill requires strengthening in many aspects.[35] For example, it does not include a disability perspective in defining the violence, nor does it address barriers specifically faced by women with disabilities in accessing the law enforcement and justice system.

In your upcoming pre-sessional review, we urge the Committee to question the government of Morocco on the following issues:

  • What legislative, administrative, or judicial measures has the government adopted to identify cases of violence and abuse against women and girls with disabilities?
  • What measures are being taken to ensure that cases of violence against women and girls with disabilities are handled in a manner compatible with the Convention, in particular with regard to their right to informed consent?
  • What concrete steps is the government taking to ensure that the services provided to women who are victims of violence, including medical, psychological and legal services, are accessible to women and girls with disabilities?
  • Is the government taking any targeted measures to ensure girls and women with disabilities have access to education and employment on an equal basis with others?

We hope you will find this submission useful and would welcome an opportunity to further discuss these issues with you. We thank you for your attention to our concerns, and wish you a productive session.

 

[1] Framework Law 97-13 (Loi-cadre n°97-13), Official Gazette No. 6466 (2016), p. 750, http://www.sgg.gov.ma/BO/FR/2016/BO_6466_Fr.pdf?ver=2016-05-30-104313-153 (accessed February 27, 2017).

[2] Framework Law 97-13, art. 18 (unofficial English translation).

[3] The Family Code of Morocco uses the term "demented" to describe persons with intellectual disabilities and the term "insane" to describe persons with psychosocial disabilities. Family Code of Morocco (Code de la Famille), Official Gazette No. 5358 (2005), p. 667, arts. 213, 216-217 (unofficial English translation), http://www.sgg.gov.ma/BO/fr/2005/bo_5358_fr.pdf (accessed February 27, 2017).

[4] Family Code of Morocco, arts. 208, 211, 213, 216-219, 233.

[5] Family Code of Morocco, arts. 211, 216-217, 220, 231.

[6] Family Code of Morocco, art. 218 (unofficial English translation).

[7] Code of Obligations and Contracts of Morocco (Code des Obligations et des Contrats), Official Gazette No. 46 (1913), p. 78, section 1, http://www.sgg.gov.ma/BO/fr/1913/bo_46_fr.pdf (accessed February 27, 2017).

[8] Family Code of Morocco, arts. 224, 226.

[9] Interview with government officials [names withheld], Rabat, April 29, 2015.

[10] Ministry of Solidarity, Women, Family and Social Development, “National Study on Disability 2014” (“Enquête nationale sur le Handicap 2014”), February 2015, p. 19, http://www.men.gov.ma/Ar/Documents/Rech-Nat2-FBilan-fr.pdf (accessed February 1, 2017).

[11] High Commission for Planning, “People with Specific Needs in Morocco According to the Data of the General Census of Population and Housing 2014” (“Les personnes à besoins spécifiques au Maroc d’après les données du Recensement Général de la Population et de l’Habitat de 2014”), http://www.hcp.ma/Les-personnes-a-besoins-specifiques-au-Maroc-d-apres-l... (accessed February 3, 2017).

[12] Government of Morocco, Report Submitted by State Party Under Article 35 of the Convention to the United Nations Committee on the Rights of Persons with Disabilities (Morocco Report), CRPD/C/MAR/1, July 8, 2015, para. 152, http://tbinternet.ohchr.org.

[13] Handicap International, “Synthesis Report: Overview of the Schooling of Children with Disabilities in the Souss Massa Drâa Region” (“Rapport de synthèse: Etat des lieux de la scolarisation des enfants en situation de handicap dans la région de Souss Massa Drâa”), p. 16-17, http://www.men.gov.ma/Ar/Documents/diagnostic_EISMDfr.pdf (accessed February 1, 2017)

[14] Morocco Report, para. 157.

[15] Morocco Report, para. 151.

[16] UNICEF, “Annual Report 2014: Morocco”, p. 3, https://www.unicef.org/about/annualreport/files/Morocco_Annual_Report_20... (accessed February 2, 2017).

[17] Moroccan Associations of Child Protection, “Alternative Report on the Implementation of the International Convention on the Rights of the Child” (“Rapport alternatif relatif à la mise en œuvre de la Convention internationale des droits de l’enfant”), July 2014, p. 12, http://tbinternet.ohchr.org/Treaties/CRC/Shared%20Documents/MAR/INT_CRC_... (accessed February 2, 2017).

[18] UNICEF, “Situation of Children and Women in Morocco – Analysis According to the Equity Approach”, September 2014, p. 83, cited in: UNICEF, “Child Notice Morocco”, 2015, para. 170, https://www.unicef.be/wp-content/uploads/2016/06/cn-marokko-eng-def.pdf (accessed February 27, 2017).

[19] Ibid.

[20] Human Rights Watch interviews with a group of families of persons with disabilities, Morocco, April 2015.

[21] Ibid.

[22] Committee on the Rights of the Child, “Concluding observations on the combined third and fourth periodic reports of Morocco”, CRC/C/MAR/CO/3-4, 2014, para. 52, http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d%2fPP... (accessed February 27, 2017).

[23] Framework Law 97-13, art. 12.

[24] UNICEF and National League for Child Protection, “Abandoned Children in Morocco. Scale, Legal and Social Overview, Care, Experiences” (“Enfance abandonnée au Maroc. Ampleur, état des lieux juridique et social, prise en charge, vécus”), 2010, p. 44, https://www.unicef.org/morocco/french/2010-Etude_Enfance_abandon_UNICEF-... (accessed February 27, 2017).

[25] Ibid., p. 43.

[26] Handicap International, “Synthesis Report of Studies “National Study: on Children with Disabilities

Abandoned in Institutions in Morocco” and “Regional Study on the Characteristics of the Process

of Taking Charge of Children with Disabilities without Families, and in Institutions in the Region of

Souss-Massa-Draa, Morocco”, December 2014, cited in: UNICEF, “Child Notice Morocco”, 2015, para. 48. https://www.unicef.be/wp-content/uploads/2016/06/cn-marokko-eng-def.pdf (accessed February 27, 2017).

[27] Paulo Sergio Pinheiro, “World Report on Violence against Children,” United Nations Secretary-General’s Study on Violence against Children, 2006, http://www.unicef.org/violencestudy/reports.html (accessed February 16, 2017).

[28] “Children with Disabilities Abandoned in Morocco: Social Institutions Criticized” (“Enfants handicapés abandonnés au Maroc : Des établissements sociaux pointés du doigt”), L’Opinion, December 22, 2014, http://www.lopinion.ma/def.asp?codelangue=23&id_info=42794 (accessed February 1, 2017).

[29] Morocco Report, para. 147.

[30] High Commission for Planning, “People with Specific Needs in Morocco According to the Data of the General Census of Population and Housing 2014” (“Les personnes à besoins spécifiques au Maroc d’après les données du Recensement Général de la Population et de l’Habitat de 2014”).

[31] Ministry of Solidarity, Women, Family and Social Development, “National Study on Disability 2014” (“Enquête nationale sur le Handicap 2014”), p. 16.

[32] Hicham Houdaifa, “The Ordeal of Women with Mental Disabilities” (“Le Calvaire des femmes en situation de handicap mental”), La Vie Eco, January 8, 2016, http://lavieeco.com/news/maroc/societe/le-calvaire-des-femmes-en-situati... (accessed February 3, 2017).

[33] Mouna Lahrach, “Violence against Women with Mental Disabilities: Everything Remains to Be Done” (“Violence à l’égard des femmes en situation de handicap mental : tout reste à faire”),  Dimabladna.ma, December 22, 2015, http://www.dimabladna.ma/index.php?option=com_flexicontent&view=items&id... (accessed February 3, 2017).

[34] Morocco Report, para. 95.

[35] Letter from Human Rights Watch to Hakim Benchamas, president of the House of Councillors, “Letter on Bill 103-13 Combatting Violence Against Women”, October 28, 2016, https://www.hrw.org/news/2016/10/28/morocco-letter-bill-103-13-combattin....

Posted: January 1, 1970, 12:00 am

Dear Committee Members:

We write in advance of the Committee on the Rights of Persons with Disabilities upcoming review of Peru, to highlight areas of concern that we hope will inform your consideration of the List of Issues on compliance with the Convention on the Rights of Persons with Disabilities. This submission focuses on participation in public and political life for people with disabilities, in particular with regard to continued restrictions on the right to legal capacity and accessibility barriers in Peru. This submission is based on our 2012 report I Want to be a Citizen Just like Any Other” Barriers to Political Participation for People with Disabilities in Peru as well as ongoing monitoring, including a follow up visit in June 2016.

1. Continued restrictions on legal capacity    

Peru’s Constitution (article 31) establishes that all citizens have the right to participate in political affairs through referendum, legislative initiative, and to promote the removal of public officials and demand accountability from them. It also establishes the right of citizens to be elected. However, the same constitutional provision conditions political rights to legal capacity.

Peru has put in force some legal and administrative provisions to facilitate political participation for people with disabilities.[1] However, civil legislation in Peru still establishes general rules for interdiction, guardianship and other forms of restriction to the legal capacity of persons with disabilities that limit their political participation, which is not in conformity with its obligations under the CRPD.

In its first Concluding Observations for Peru adopted by the CRPD Committee in May 2012, the Committee recommended that the government should (1) “restore voting rights to all people with disabilities…, including people with disabilities subject to judicial interdiction”.[2] Likewise, the Committee recommended the State Party to (2) “abolish the practice of judicial interdiction and review the laws allowing for guardianship and trusteeship to ensure their full conformity with article 12 of the convention and take action to replace regimes of substituted decision-making by supported decision-making, which respect the persons autonomy, will, and preferences.”[3] Finally, the Committee recommended to (3) “bring forward a far-reaching strategy to implement all the rights enshrined in the convention and speed up the review of its legislative framework to bring it in full conformity with all provisions of the Convention.”[4]

While some steps have been taken to address the recommendations put forward by the CRPD Committee in its Concluding Observations of May 2012, Peru has not yet reformed its electoral legislation to enable people with disabilities to fully exercise their political rights

Before 2011 Peru had a policy to remove people with certain disabilities (mostly intellectual or psychosocial disabilities) from the electoral registry even if they were not under guardianship with the intention of ensuring that they could not be subject to sanctions in case they did not vote. This policy was changed in 2011[5] by a resolution of the National Registry of Citizens for Elections (RENIEC), but not all people who were stricken from the electoral registry have been able to re-register.[6] Re-registration of voters with disabilities has been slow. One advocate from the disability sector in Peru reported to Human Rights Watch that in some cases, because voters with disabilities need to rely on third parties such as family members to take them to the polling stations on election day, this creates a barrier to registration as there may not be someone willing to assist them to the polls on the day or to help them follow the dispensation procedure.[7]

In 2012 a new General Law on Persons with Disabilities was adopted (Law number 29 973), which introduces a true shift in approach towards the rights of persons with disabilities, which is based on equality and non–discrimination. This new law recognizes the right of people with disabilities to legal capacity in all areas of life, including political participation. It also establishes an interim provision to create a Congressional Commission to put forward reforms to Peru’s civil legislative framework.[8] A draft project of the bill to amend the Civil Code was presented to the former legislative body in Peru and a revised draft of the original bill was submitted to Congress in 2017. If passed, this project will remove the restriction of legal capacity established in article 33 of the Peruvian Constitution, enabling persons with disabilities to exercise their political rights. Efforts should be made to expedite this process, and also adopt other legal amendments to the electoral code to provide accessibility in electoral procedures as a whole. Finally, Law number 29973, mentioned above, provides a very sound framework to address the CRPD Committee’s recommendations to implement all the rights enshrined in the Convention, however Peru should still review the rest of its legislation –criminal and administrative– to align it with the standards set forth in international human rights disability law.

We recommend including the following questions and concerns to the list of issues you will adopt in your next session:

  • Can you confirm that voting rights have been restored to all 23,000 people who were deleted from the voter registry in 2011? How was this process done?
  • Please provide information about the timeline to reform Peru’s civil legislative framework to ensure full legal capacity for people with disabilities.
  • Please provide information as to whether the government plans to remove from the Constitution the pre-requisite condition of having legal capacity to exercise voting rights.

2) Accessibility barriers for political participation

Peru has put in force some legal and administrative provisions to facilitate political participation for people with disabilities[9], however they are still several shortcomings in law and practice.

Barriers to accessibility, for example, hinder the political participation and political rights of persons with disabilities in Peru. None of the laws currently in force in Peru make it mandatory to ensure accessible conditions in voting polls on election day.

In the last presidential election in 2016, for example, José Isola, a Peruvian citizen who uses a power wheelchair, had difficulties accessing the polling station, which was situated on the second floor of a building with no lift. It was not possible for members of the voting station to move the electronic voting device – a new feature of this election - to the first floor. They offered to carry him upstairs but he refused because his wheelchair is not designed to be carried up stairs. They also offered to carry him in a plastic chair but he considered it was against his dignity and it was not a safe procedure.[10]  

According to the Peruvian Constitution and ordinary electoral legislation, everyone in the country has the obligation to vote, and if they do not comply with it they are subject to fines and other administrative sanctions. In certain situations, a dispensation procedure can be followed to issue a justification for failing to vote. Having a disability is a ground on which one can receive dispensation from voting.

Accessibility is a general principle that governs the implementation of all rights enshrined in the CRPD and is a prerequisite for persons with disabilities to participate fully and equally in society. Under the CRPD, the government bears the responsibility to to ensure persons with disabilities enjoy access, on an equal basis with others, to facilities and services open to the public, as well as to information.

The current system in Peru, however, places the burden on the citizen with a disability. A voter with a disability has to submit an accessibility request in advance to ONPE (Oficina Nacional de Procesos Electorales), the agency responsible for organizing election procedures.[11] Once the request is submitted, ONPE refers the person to an accessible voting station, which, according to one RENIEC official with whom Human Rights Watch spoke, might not necessarily be close to his or her home. In case a polling station is not accessible, the person prevented from voting by this barrier can ask for a dispensation to avoid sanctions.

Human Rights Watch is concerned of reports that when voters with disabilities cannot rely on family or friends to help them exercise their right to political participation that the dispensation system is a convenient way for the state to “resolve” the non-exercise of voting rights by persons with disabilities, rather than address the issue of accessibility. 

According to one official in the Ombudsman’s Office, the focus of state authorities until now has been on facilitating dispensation procedures instead of creating accessible conditions for persons with disabilities to exercise their political rights.[12]  Families of persons with disabilities have complained to the Ombudsman’s Office that if they don’t file for a dispensation procedure for their relative, that relative can subsequently be excluded from other legal rights, procedures and transactions. Families have reported that if they go to the polling stations on the day of the election and it is inaccessible, then they have to file a new petition in order not to be fined and get a dispensation from voting.

We urge the Committee to include the following questions and concerns in the List of Issues for Peru:

  • Please provide information on whether the Electoral Code provides general obligations for the implementation of universal design in voting procedures.
  • Please provide information on whether the Electoral Code establishes accessibility guidelines on voting procedures, and other accessibility obligations towards voters with disabilities, including accessible facilities and voting material (braille ballots), and that voting procedures are appropriate, easy to understand and use.
  • Please provide information concerning the passage of any administrative resolutions by the National Jury for Elections to prevent people with disabilities from being sanctioned for failing to vote on political elections.
  • Please provide information on the procedure to enforce sanctions on people who fail to vote and the impact this might have on political participation for people with disabilities.
  • Please provide information on the steps taken to ensure that the electronic voting system is accessible for people with disabilities.

We hope that our research, observations, and recommendations presented for the List of Issues for Peru’s next review are useful to the Committee, and we are happy to answer any questions and be of further help to the Committee as it carries out its important work.

 

[1] Resolución Jefatural N° 224-2006-J/ONPE, Disposiciones sobre la atención preferente a ciudadanos con discapacidad, mujeres embarazadas y adultos mayores durante procesos electorales; Resolución Jefatural N° 074-2012-J/ONPE; Disposiciones sobre el Procedimiento de Designación de Miembros de la Mesa de Sufragio para los procesos electorales, modificado por Resolución Jefatural N° 176-2013-J/ONPE; Ley Orgánica de Elecciones N° 26859; Disposiciones sobre el Voto Rápido, Resolución Jefatural N° 000301-2015-J/ONPE; Disposiciones sobre la Atención Preferente a Ciudadanos con Discapacidad, Mujeres Embarazadas y Adultos Mayores durante Procesos Electorales. Resolución Jefatural N° 224-2006-J/ONPE.

[2] CRPD/C/PER/CO/1 paragraph 45.

[3] CRPD/C/PER/CO/1 paragraph 25.

[4] CRPD/C/PER/CO/1 paragraph 7.

[5] Human Rights Watch, I Want to be a Citizen Just like Any Other”: Barriers to Political Participation for People with Disabilities in Peru, May 2012.

[6] Interview with Liliana Peñaherrera Sánchez, member of the Board of Directives of the Federación Iberoamericana de Síndrome Down, Lima, Peru, July 1, 2016.

[7] Ibid.

[8] The Congressional Commission was formed by legislators, a representative of the judicial branch, a representative of the National Commission for Disabilities (CONADIS), a representative of law universities, representatives from two civil society organizations and the public defender’s office (ombudsman) acting as an observer. After working for more than a year, the Commission finished a reform bill of the Civil Code that was presented to Congress. The reform project did not pass because no agreement was reached among parliamentarians.

[9] Among them we can mention: Resolución Jefatural N° 224-2006-J/ONPE, Disposiciones sobre la atención preferente a ciudadanos con discapacidad, mujeres embarazadas y adultos mayores durante procesos electorales; Resolución Jefatural N° 074-2012-J/ONPE; Disposiciones sobre el Procedimiento de Designación de Miembros de la Mesa de Sufragio para los procesos electorales, modificado por Resolución Jefatural N° 176-2013-J/ONPE; Ley Orgánica de Elecciones N° 26859; Disposiciones sobre el Voto Rápido, Resolución Jefatural N° 000301-2015-J/ONPE; Disposiciones sobre la Atención Preferente a Ciudadanos con Discapacidad, Mujeres Embarazadas y Adultos Mayores durante Procesos Electorales. Resolución Jefatural N° 224-2006-J/ONPE.

[10] Interview with Silvana Queijas, chair of Sociedad y Discapacidad - Sodis, an NGO that advocates for the human rights for people with disabilities, Lima, Peru, July 1, 2016. Jorge Isola obtained a justification that he was not able to vote because of accessibility barriers. With that document he was supposed to initiate the dispensation procedure.

[11] ONPE is the autonomous government organization in charge of organizing electoral procedures in Peru.

[12] Interview with Malena Pineda, head of the disability division in the Peruvian ombudsman, Lima, Peru, June 30, 2016.

Posted: January 1, 1970, 12:00 am

Thousands of children in Armenia are needlessly separated from their parents and placed in institutions due to disability or poverty. The government should urgently provide community-based services and quality inclusive education so that all children, including children with disabilities, can grow up in a family. Human Rights Watch found that thousands of children in Armenia live in orphanages, residential special schools for children with disabilities, and other institutions. They often live there for years, separated from their families. Over 90 percent of children in residential institutions in Armenia have at least one living parent. Human Rights Watch also found that the Armenian government is not doing enough to ensure inclusive quality education for all children, including children with disabilities studying in their community schools with reasonable support for academic and other achievements.

Posted: January 1, 1970, 12:00 am

(Yerevan) – Thousands of children in Armenia are needlessly separated from their parents and placed in institutions due to disability or poverty, Human Rights Watch said in a report released today. The government should urgently provide community-based services and quality, inclusive education so that all children, including children with disabilities, can grow up in a family.    

The 102-page report, “‘When Will I Get to Go Home?’ Abuses and Discrimination against Children in Institutions and Lack of Access to Quality Inclusive Education in Armenia, documents how thousands of children in Armenia live in orphanages, residential special schools for children with disabilities, and other institutions. They often live there for years, separated from their families. More than 90 percent of children in residential institutions in Armenia have at least one living parent. Human Rights Watch also found that the Armenian government is not doing enough to ensure quality, inclusive education for all children. Inclusive education involves children with disabilities studying in their community schools with reasonable support for academic and other achievement.

“The government of Armenia has made some bold commitments to reduce the number of children in institutions, but needs to make sure those promises are backed by serious, sustained action,” said Jane Buchanan, associate Europe and Central Asia director at Human Rights Watch and author of the report. “All children have the right to grow up in a family, and government and donor resources should support families and children, not large institutions.”

Thousands of children in Armenia are needlessly separated from their parents and placed in institutions due to disability or poverty. 

Children have the right not to be unnecessarily separated from their parents. Neither poverty nor disability can be a justification or a basis for placement of a child in an institution.

Residential institutions often serve as the main distributor of social services to families facing difficult life circumstances such as poverty, unemployment, poor housing, health issues, or disability. Services and staff are often concentrated in institutions, rather than available and accessible in communities, including for the rehabilitation and education of children with disabilities. This compels many families to send their children to residential institutions, even when they would prefer to raise them at home.

The government aims to move children out of at least 22 residential institutions by 2020 and transform these buildings into centers for community-based services. Some have already been converted. However, the three orphanages that exclusively house children with disabilities will continue to operate. Failing to provide family-based care for children with disabilities on an equal basis with other children is discriminatory and should be ended immediately, Human Rights Watch said.

The government also has stalled key amendments to the Family Code, which would facilitate foster care and adoption – options essential when children cannot safely return to their birth families. The current government budget provides support for only 25 foster families in the country.

According to UNICEF, financial support for children in institutions in Armenia is between US$3,000 and US$5,000 per year per child. These funds could be used for community-based services and direct support to families, which are less expensive in the long term, according to UNICEF.

Even well-resourced orphanages are often overcrowded, with children organized into large groups with few caregivers. Even the most dedicated staff may not be able to provide the individual attention and nurturing that children need to thrive.

When Meri was born with Down Syndrome in 2009, a doctor encouraged her parents to leave Meri in the hospital, claiming she would not live long due to her disability. After a family crisis five years later, her parents decided they wanted to learn what happened to their daughter, and ultimately found her living in an orphanage for children with disabilities. Her father Artur described her growth and progress upon returning home from the orphanage: “She wasn’t walking at all. She only started walking when she came home. … She is understanding more. She knows her name. She can respond. … Meri is a blessing. If we didn’t trust our family doctor, we never would have abandoned her.”

In terms of education, the government has committed to making the entire school system inclusive by 2022. But at present the lack of an individual approach to academic achievement, as well as physical barriers in schools and communities, means that some children with disabilities in Armenia receive no education at all. Others enrolled in “inclusive” community schools may attend school for only a few hours a day, or a few days a week.

Children with disabilities often do not attend classes with other children or if they are in the classroom, may not be provided with the services they need to participate in an academic curriculum. They may instead be given art, sewing, or other tasks to occupy them. For many children with disabilities, their education consists primarily or exclusively of one hour or shorter individual sessions once or a few times a week.

Community schools often lack sufficient staff, in particular aides who can provide direct support to one or more children. In some cases, a parent, most often a child’s mother, will remain with the child in the classroom to provide support. Some children with disabilities receive sub-standard home education, with teachers visiting a child at home to teach basic literacy and numeracy only.

International standards provide that schools should be fully accessible, and provide reasonable accommodations to support students, regardless of their disability. Support measures provided to children with disabilities should be individualized, based on each child’s particular learning needs, and strengthen opportunities for students with disabilities to participate fully in the classroom.

Children with disabilities who age out of orphanages or special schools may remain in institutions as adults indefinitely. This can be due to the lack of accessibility in housing, transportation, and employment. In other cases, however, they remain in institutions because they are deprived of their legal capacity, denied the right to make decisions for themselves. They can be denied opportunities most people take for granted, such as deciding where to live, having a job, developing friends and hobbies of their choosing, finding a life partner or spouse, or raising children.

“Edmond” (not his real name), a young adult with a mild intellectual disability who lives in an institution, told Human Rights Watch, “I cannot answer who decides that I stay here. … I have been here since I was 8 years old, and I will stay here. It is one of my dreams to be able to live on my own and live my own life. For a long time, I thought about being able to live on my own, but I lost hope.”

“Children and young adults with disabilities have the same rights to education and opportunities as their peers,” Buchanan said. “Making sure children with disabilities can go to school in their communities is a good first step, but it is an empty gesture unless children get a quality education that enables them to achieve academically, fulfill their potential, and contribute to a diverse society.”

Posted: January 1, 1970, 12:00 am

At her local church in Yerevan, Armenia, Siranush lit a candle and prayed that her daughter would survive the night. Lusine, 22, was hovering between life and death in a nearby hospital after a terrible car crash. As Siranush pleaded for her daughter’s life, she offered up something in return. “If you save Lusine, I promise I will find out what happened to Meri,” she prayed. “Wherever she is, I will find her.”

For Lusine was not Siranush’s only daughter. Five years earlier, she and her husband, Artur, had a baby girl. But after a long delivery fraught with complications, the baby, Meri, had died.

After spending the first five years of her life in an orphanage, Meri is enjoying living with her family. © 2016 Human Rights Watch 

At least, that’s what they told their family. But as Siranush prayed that night, she was also grappling with something heavier on her conscience. The fact that Meri had not, in fact, died at birth. 

“We committed a sin about Meri,” Artur says. “But now we wanted to find her again.”

And so with one daughter fighting for her life, Siranush and Artur began, belatedly, to fight for their other one – the daughter born different who, like many similar children in Armenia, are needlessly torn from their parents and put into institutions.

The “sin” Artur talks of began on August 12, 2009. Siranush’s labour was not going well. The baby’s heartbeat was weak and doctors performed an emergency Caesarean. After an interminably long wait while Siranush had the surgery, a gloomy-looking doctor appeared before Artur. She explained that while his wife had been saved, their daughter Meri had been born with heart defects and Down Syndrome.

'You have other children already', the doctor reminded them.

Then their trusted family doctor broke even worse news: Meri would very likely die within a few days. She said it was best if Siranush and Artur returned home and left Meri to die peacefully in the hospital. “You have other children already,” the doctor reminded them.

Siranush was fiercely against leaving Meri behind, but Artur gently persuaded her to follow their doctor’s advice. As small-scale fish farmers, the couple had no medical knowledge or reason to doubt the professionals if they said it was hopeless.

And so Siranush and Artur’s secret began. The questions about where their baby was were so painful, Artur says, it was simpler to tell everyone she had died.

In the following weeks, the family tried to return to normal. But Siranush could not.
 

Lusine helps to feed her sister Meri. The pair have formed a very close bond. © 2016 Human Rights Watch

Even though the couple guessed Meri must have died soon after they left her, Siranush continued to sense her daughter’s presence. As the months turned to years, she began having a recurring, vivid dream that Meri was alive.

For his part, Artur had convinced himself that Meri was dead. But Lusine’s car accident quickly unravelled his conviction.

“We were at church constantly,” Artur recalls. “My wife began worshipping, promising that whatever happened to Lusine, we will find Meri and lighten our sin.”

And so Artur and Siranush set to work. Within days, they discovered that Meri had survived and been moved among various orphanages. With the help of a relative, they managed locate her in an orphanage in Yerevan, a short drive from their home.

Finally, after five long years, they met the daughter they had reluctantly abandoned. “They brought Meri to me, and I was shaking all over my body, I couldn’t help it,” says Artur. “I was hugging the child, I couldn’t speak. My tongue was tied. It was very emotional.”

 
Five years in an orphanage had taken its toll on Meri. She could not walk, and got around by crawling.

Artur describes an instant bond with the daughter he last saw when she was just three or four days old: “You can’t imagine it, but she recognized me immediately. Solely on our blood connection she could feel it. It was instinct.”

The family swiftly met with the orphanage director, “a good woman,” who agreed to let Artur and Siranush take Meri home just 40 days later. She warned them it would be hard, but their mind was set.

Five years in an orphanage had taken its toll on Meri. She could not walk, and got around by crawling. She did not speak, and did not even scream to communicate.

But she felt instantly at home. “There was an impression that Meri knew all the corners in our apartment,” said Artur. “She accepted us easily. She did not appear upset with us. Either from our warmth, or our common genes, she felt like we are her family.”

 

Meri and her elder sister Lusine. © 2016 Private

In the loving care of a warm home, Meri, now almost 8, began to change. She’s formed a strong bond with her elder sister, Lusine, who survived her accident, and now dotes on her newfound sibling with obvious affection. Meri has learned to walk, and can even say simple words like “ma” and “pa.” “The difference is like mountains,” says Artur proudly. “We are hopeful, we believe, that a lot of things will change in her.”

She adores music, and has a keen sense of humor. While she can’t do some things other children can, she loves to be hugged, especially as she holds her dad around his neck.

Meri’s story may seem incredible, but it’s not unique. More than 3,000 children live in orphanages or other institutions in Armenia. But, as Human Rights Watch found for its report, many of them are needlessly separated from their parents. Sometimes it’s because the child has disabilities, sometimes it’s because the family is too poor to cope. A staggering 90 per cent of children living in institutions in Armenia have at least one living parent.

Institutions are expensive, too. It costs the Armenian government US$3,000 to US$5,000 a year to house a child in a residential unit. Caring for them at home would cost less.

Foreign donors who want to help disadvantaged kids have flocked to support the country’s orphanages. While institutions can look clean and decently equipped, they are frequently overcrowded, with up to 15 children for every two caregivers, meaning the children get scant individual attention. Children adhere to a strict daily routine that is convenient for the institution but ignores their individual needs and desires.

 
Ultimately, even the most well-resourced orphanage can’t replace a home. All children have the right to grow up in a family, where they can get the attention and nurture they need to thrive, as Meri’s story shows.

Now that Meri is finally home, her next step is to attend school. On paper, all children in Armenia have the right to attend their local community schools, and the government is supposed to provide inclusive education and support children with disabilities to study alongside their peers.

 

The hope is that one day Meri may be able to join her peers and attend a local community school. © 2016 Human Rights Watch 

In fact, the Armenian government has committed to provide inclusive education across its school system by 2022. This is an important pledge. But many schools struggle to provide a quality education for children with disabilities. And stigma against these children, while slowly changing, is still an issue.

Meri’s parents are anxious about how a school system that is still figuring out how to meaningfully include all children with disabilities will support Meri. So for now she attends a program for children with Down Syndrome.

Artur and Siranush feel deep shame for having given Meri up. But they say they would never have done so if their family doctor hadn’t convinced them it was for the best. And they are not alone. Social stigma, poverty, lack of community-based services, and misleading medical advice means hundreds other parents in Armenia are pressed into the same, devastating choice.

Despite the grief they still carry, Siranush and Artur say they now feel blessed. “We found our lost princess,” says Artur. “Meri is our happiness and we all love her.” 

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