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
(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.

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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

Summary

Gohar, sent her son Artur, now 13, to a residential special school for children with disabilities in Yerevan, 120 kilometers away from their home, when Artur was 7. While fighting back tears, Gohar explained the emotional difficulties for Artur when he was separated from his family:

He didn’t feel comfortable at the school and refused to eat. This was his protest. Whenever he came home, he ate normally. At the beginning, we brought him home every two weeks for two or three days. But the teacher said that we shouldn’t come so often because after he returned to school, he would be more emotional. We were told to take him only during the long school breaks. I am sad when I remember those four years. We knew that my son was having difficulties and didn’t want to stay at the school, but we felt that there was no other option. 

Artur spent four years at the special school in Yerevan before his family enrolled him in a local special school. Artur struggled emotionally to make the transition. Gohar told Human Rights Watch about the emotional effects of his time away from his family:

Even after he came back home to live, he was afraid when we went out somewhere or took him to school. He thought we were leaving him. It took him time to understand that it’s not forever and that we will be coming back very soon.

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

Most children in Armenia in orphanages and other residential institutions end up in them because, like Artur, they have disabilities or due to poverty and other vulnerabilities that make it difficult for their families to care for their children. Indeed, 90 percent of children in residential care in Armenia have at least one living parent. While governments have obligations to provide for alternative care where a child is deprived of their own family environment, long-term institutional care is not a suitable alternative to family-based care for any child, whether with or without disabilities. Even the most well-resourced institutions cannot replace a family, and research by the United Nations Children’s Fund (UNICEF) and others has demonstrated that life in institutions can have serious consequences for children’s physical, cognitive, and emotional development.

The government of Armenia is undertaking some important reforms aimed at protecting the rights of children. These include reducing the number of children in state-run residential institutions and moving these children back to their families, with community-based services and other means to support families, a process known as deinstitutionalization. An essential component of deinstitutionalization is reform to the education system to expand opportunities for all children, including children with disabilities, to study in their communities.

However, Human Rights Watch is concerned that these reforms will fall short of reaching their potential to ensure the basic rights of all children in Armenia to live in the community and to enjoy a quality education. Human Rights Watch is particularly concerned that children with disabilities will be left behind and face further discrimination. Human Rights Watch research in 2016 indicates that the Armenian government needs to make much more effort to prioritize development of community-based alternatives to residential institutions, or risk a continued reliance on institutions, rather than ensuring that children, particularly children with disabilities, grow up in a family, as is their right.

Although reforms over several years have helped to ensure that more children with disabilities study in community schools, many children with disabilities do not receive a quality education in these schools, due to a lack of reasonable accommodations to facilitate their learning. Education is a prerequisite for full inclusion and participation of people with disabilities in the community, and for countering isolation and exclusion. 

The government’s policies on deinstitutionalization and inclusive education, as they are currently being implemented, do not guarantee the rights of children with disabilities on an equal basis with other children and are discriminatory. As the starkest example, the government plans to transform three orphanages, known as generalized orphanages, which primarily house children without disabilities, into non-residential centers to provide community-based services. However, the authorities have no plans to transform or close three other orphanages where children with disabilities live. Thus by 2020, when the three generalized orphanages are slated to be transformed from residential institutions to community-based service providers, only children with disabilities will remain in orphanages. Most are at risk of needlessly spending their entire lives in an institution.

The government of Armenia and its partners in the deinstitutionalization process should immediately take steps to prioritize family-based care equally for all children currently in residential institutions and at risk of being placed in residential institutions. The government should also ensure provision of a quality education equally to all children, without discrimination.

This report is based on Human Rights Watch visits to five state-run orphanages and ten state-run schools, including six special schools and four mainstream schools, and interviews with 173 people, in eight cities in Armenia. 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.

Abuses Against Children and Young People in Institutions

There are three types of state residential institutions in Armenia: orphanages, residential special schools, and night boarding institutions, where children eat and sleep during the week. According to UNICEF, there are nearly 3,500 children in residential institutions in Armenia; of 670 children in orphanages, 70 percent have disabilities. The material conditions in most institutions in Armenia visited by Human Rights Watch appeared adequate, if basic, in terms of shelter, clothing, food, heat, and other basic care. Some institutions had high-quality, modern therapeutic equipment and services. This is largely a result of substantial support from international donors, including individuals, foundations, international organizations, international governments, and others.

However, numerous observational studies have documented stunted physical, intellectual, emotional, and social development among children separated from family environments and placed in residential institutions. Institutional care is defined by certain characteristics that are harmful to children, including separation from families and the 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. Studies have also found that children moved from institutional care into families, including adoptive and foster families, have much better outcomes. 

In addition to the harm to children of institutionalization itself, Human Rights Watch research in 2016 documented abuses against children with and without disabilities living in even the most well-resourced residential institutions, including the lack of individual attention and nurture, a lack of privacy, and a lack of accessibility for children with disabilities. Both children in institutions and their parents often experience severe emotional distress as a result of their separation.

In addition, concentrating services for children, in particular for children with disabilities, in institutions rather than in the community can contribute to many families’ decisions to place children in institutions. It also deprives children in the community of access to services which they may need. Residential institutions currently serve as the main mechanisms for social service delivery in many parts of Armenia. Human Rights Watch research found that basic material support (food, clothing, etc.) and trained staff to provide rehabilitation, education, and other services to children are frequently only found behind the walls of institutions and available only to the children living inside.

This structure also means that many children who remain with their families and who may require or benefit from certain services and resources are often unable to access them. According to one expert on children’s rights in Armenia, of 830,000 children in Armenia, about half could benefit from some form of differentiated services, which are not widely available in communities, but concentrated in institutions.

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.” UNICEF found that the financial support allocated for children in institutions in Armenia, currently between US$3,000 to 5,000 per year per child, can be reallocated to community-based services and direct support to families, and that these types of supports in the long term are less expensive.

In residential institutions, children are divided into groups, and typically eat, sleep, and do other activities in the group. Children and young adults were typically organized in groups of between 10 and 12 children, but up to 17 children, with two caregivers. With such a large number of children to care for, even the most dedicated and caring staff are challenged to provide individualized attention and care, in particular to very young children or children with certain support needs relevant to their disabilities. The organization of children into large groups for the convenience of the institutional system also leads to a lack of privacy, with even older children and young adults sleeping in bedrooms with up to 13 others. 

Residential institutions do little to prepare children to live on their own once they become adults. The lack of preparation for independent living is true for both children with and without disabilities, but is more significant for children with disabilities. Children with disabilities who age out of institutions for children may remain in institutions indefinitely also due to the lack of alternatives in the community, as well as officials’ failure to guarantee some young people with disabilities the right to exercise their legal capacity when they turn 18. As a result, young people with disabilities in institutions are denied opportunities most people take for granted, such as deciding where to live, having a job, developing a circle of friends of their choosing, finding a life partner or spouse, raising children, and enjoying cultural and other activities of their choosing.  

Under international law, states should ensure that children are not separated from their parents unless that separation lies in the child’s “best interests.” The United Nations Guidelines for the Alternative Care of Children additionally state that financial and material poverty should never be the only justification for the removal of a child from parental care or for receiving a child into alternative care, but should be seen as a signal for the need to provide appropriate support to the family. 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.”

The Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD) oblige Armenia to ensure that children with disabilities enjoy their rights without discrimination. The treaties require Armenia to consider children with disabilities as members of society with rights on an equal basis as others and to remove barriers that prevent children from full inclusion in society. In no case shall a child be separated from parents on the basis of a disability and states should “undertake every effort to provide alternative care with the wider family, and failing that, within the community in a family setting.”

Lack of Access to a Quality Inclusive Education

In order for the Armenian government’s deinstitutionalization program to succeed, the government needs to guarantee community-based services to families and children, including education. Provision of a quality education for all children, regardless of disability, in community schools is an essential component of transformation of the system whereby children with disabilities have been educated in so-called special schools for children with disabilities, in isolation at home because of barriers to accessing schools, or not at all. Without accessible, quality education in the community, children with disabilities are at risk of continued isolation in residential institutions.

Education whereby students with and without disabilities study together in mainstream schools and children with disabilities receive the accommodations they may need to succeed in a mainstream environment is known as inclusive education. Quality inclusive education is acknowledged as the most appropriate means for governments to guarantee universality and nondiscrimination in education. Inclusive education is not only relevant for the education of students with disabilities, but should benefit all children and be “central to the achievement of high-quality education for all learners and the development of more inclusive societies.” 

The Armenian government has committed to making all primary and secondary schools (compulsory education, grades 1 to 9) inclusive for children with disabilities by 2022. According to the Ministry of Education and Science, for the 2016-2017 school year, 6,700 children with “special educational needs” are enrolled in mainstream schools providing inclusive education. However, 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. The lack of reasonable accommodations, including basic physical accessibility in buildings; sufficient, trained staff; and a lack of individualized approach to children’s education and social development impedes the ability of many children with disabilities to enjoy a quality education.

Some 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. Despite attending so-called inclusive schools, children with disabilities often do not attend classes with other children or are present in classrooms but do not fully participate in an academic curriculum. Their education often consists of primarily or exclusively one hour or shorter individual sessions once or a few times a week.

Inclusive community schools and special schools often lack sufficient staff, in particular aides who can provide direct support to one or more children. As a result, in some cases a parent, most often a child’s mother, must remain with the child in the classroom to support him or her. 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.

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 can inhibit children’s full inclusion in the community. 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.

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 other 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.

International standards require schools to provide reasonable accommodations to support students, regardless of their disability. The CRPD has stated that the education of persons with disabilities should enable “each student to live, study and act autonomously, with adequate support, taking into account individual capacities.” The CRPD also notes that any support measures provided to children with disabilities should be “compliant with the goal of inclusion. They must be designed to strengthen opportunities for students with disabilities to participate in the classroom… rather than marginalize them.” 

Government Response

The government of Armenia has taken a number of positive steps to prioritize family-based care for children. With the financial support of the United States Agency for International Development (USAID), UNICEF is supporting the government in a program which aims over four years to decrease by 50 percent the number of children in institutions across the country and for 22 institutions, including orphanages, special schools, and night boarding institutions, to be transformed into community-based service centers. The government’s new draft Strategic Plan for the Protection of the Rights of the Child goes even further to say: “At least 70 percent of children in institutions will be transferred to families” by the plan’s end in 2021.

The UNICEF-supported program includes legal reforms to revise the systems for foster care and adoption and for social workers and case managers; prevention of children being placed in institutions; transformation of institutions into centers to provide social support, aftercare services, and day care; increasing the number of foster care families; support to biological families to help them care for their children; and inclusive education. 

Alternatives to institutions, such as foster care and adoption services, while currently under development, also remain minimal and should be developed at a commensurate pace to deinstitutionalization. Currently, key amendments to the family code that would facilitate the opportunity for more children to be placed in foster families and to promote adoption, are stalled in government. One key change will allow children whose parents have not relinquished their parental rights to be placed in foster care. There are currently a total of 23 foster care families in all of Armenia, and budget support allocated only for a total of 25. Without changes to the family code and budgetary commitments to alternatives, the government’s deinstitutionalization program will stall.

In addition, in the majority of communities, social services for vulnerable children and families remain limited, including differentiated types of family support based on identified needs. Although these types of services are under development in conjunction with the UNICEF-supported project, it is essential that they be developed at a pace commensurate to that of deinstitutionalization, and that children with and without disabilities receive equal treatment.

As noted above, although the government has committed to closing a number of institutions, it thus far insists on keeping some open, which risks a continued reliance on these institutions. This will be exacerbated by the lack of alternatives to institutions, such as foster families and adoption, and the absence of community-based services and inclusive education. In its 2016 research, Human Rights Watch found that some children with and without disabilities are moved out of one orphanage or institution, only to be placed in another orphanage or residential special school, in many cases for exactly these reasons.

Children who are moved out of institutions may be returned to families who may still be facing many of the same challenges that prompted their child’s initial placement in the institution. They may in many cases require substantial and sustained support, including regular contact with and support from social workers or similar professionals.

Key Recommendations for the Way Forward

The government of Armenia is in a distinct position of having made certain commitments towards deinstitutionalization and prioritization of family-based care for children. It has also made a bold pledge to make all schools inclusive, signaling a recognition of the rights of children with disabilities to be included in the community. The government should realize these commitments fully and sustainably, and in such a way that fully respects rights and meets the needs of families and children.

The Government of Armenia should:

  • Deter any new placements of children in residential institutions;
  • Establish a time-bound plan to end the use of residential institutions for all children, with limited exceptions. Children should not be placed in residential institutions except in emergency cases or to prevent the separation of siblings, and for a limited duration, and with planned family reunification or placement in other appropriate long-term alternative care as the ultimate outcome for the child;
  • End discrimination in the deinstitutionalization process, including by guaranteeing that the national deinstitutionalization policy includes children with disabilities, and does not discriminate against children on the basis of disability, on the type of disability or high support needs;
  • 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;
  • 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;
  • Pay particular attention to the needs of families of children recently returned to homes from institutions;
  • 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;
  • International donors should support the government in realizing these recommendations.

Methodology

Human Rights Watch interviewed 173 people during field research for this report in April, May, and December 2016 in eight cities in Armenia: Yerevan, Kapan, Goris, Vanadzor, Gyumri, Armavir, Hatsik, and Chambarak.

Researchers interviewed 47 children and young people, including 32 children ages 8 to 17, and 14 young adults, ages 18 to 29. We also interviewed 63 families of children living in orphanages, living in or attending special schools, or attending mainstream schools. Human Rights Watch held most interviews in private, including all interviews in institutions. In some cases, children and parents were interviewed with each other present.

Human Rights Watch visited five orphanages and ten schools, including six special schools and four mainstream schools. During visits to these institutions, we interviewed children, as well as 31 staff members, including directors, teachers, social workers, doctors, caregivers, psychologists, a lawyer, and other staff. In all cases, researchers conducted interviews with children in private.

In all cases, Human Rights Watch informed interviewees of the purpose of the interview, that they would receive no personal service or benefit, and that the interviews were completely voluntary. Participants gave oral informed consent to participate.

Unless otherwise noted, we have used pseudonyms for all children, young people, and their families in order to protect their privacy. In some cases, we have concealed other details, such as the name of the institution where a child resides or resided. We have also withheld names and other details about some institutional staff to protect them from possible reprisals.

Human Rights Watch met with representatives from the Ministry of Labor and Social Affairs, the Ministry of Education and Science, the Ministry for Territorial Affairs and Administration, the Yerevan Mayor’s Office, one regional Child Protection Unit, and the National Assessment Center. As part of this research, we also reviewed a number of government policies and laws and relevant reports from United Nations agencies and treaty bodies, the European Union, and NGOs. In November 2016, Human Rights Watch sent letters to the Ministry of Labor and Social Affairs of Armenia, the Ministry of Education and Science, the Ministry for Territorial Affairs and Administration, and the Yerevan Mayor’s Office, requesting responses to specific questions. This correspondence can be found in an annex to this report.

Human Rights Watch also interviewed staff from the United Nations Children’s Emergency Fund (UNICEF), the United States Agency for International Development (USAID), the World Bank, as well as several large international organizations working on children’s rights in Armenia, including Caritas Armenia, Children of Armenian Fund (COAF), Fund for Armenian Relief (FAR), Open Society Foundations-Armenia, Save the Children, SOS Children’s Villages, and World Vision. Human Rights Watch also met with representatives of 17 local nongovernmental organizations and organizations of persons with disabilities in different cities in Armenia.

Interviews with children were conducted in Armenian with the assistance of a translator, fluent in Armenian and English, with the exception of one interview conducted in English with a child with a strong command of English. Interviews with parents, institution staff, government officials, and representatives of Armenian NGOs were largely conducted in Russian, by researchers fluent in Russian. In some instances, interviews with these individuals were conducted in Armenian, with the assistance of a translator.

In line with international instruments, the term “child” as used in this report refers to a person under the age of 18; “young people” refers to persons between the ages of 18 and 30.

I. Overview of Residential Institutions in Armenia

According to UNICEF, as of April 2016, there were nearly 3,700 children in residential institutions in Armenia; 90 percent have at least one living parent.[1] There are three types of state residential institutions in Armenia: orphanages, residential special schools, and night boarding institutions. Orphanages are divided into two types: generalized, for children without disabilities, and specialized, for children with disabilities.[2] Orphanages and night boarding institutions fall under the authority of the Ministry of Labor and Social Affairs and special schools are under the supervision of the Ministry of Education and Science, the Ministry for Territorial Affairs and Administration, or the Municipality of Yerevan.

Of 670 children residing in orphanages in May 2016, 70 percent have disabilities.[3] Children and young adults in orphanages reside there continuously. Visits home or by family members are rare for children in orphanages. At night boarding institutions, children typically spend the school week there to eat and sleep, and attend a community school during the day. Many children return home on the weekend, although some children may stay in night boarding institutions continuously and return home only for school holidays.

Special schools have the most variety in terms of arrangements, with some children residing continuously except for school holidays, some children resident just for the school week, and some children attending during the school day only. Special schools are a legacy of the Soviet Union whereby children with disabilities studied almost exclusively in institutions specialized according to their disabilities. As of December 2016, there were 20 special schools in Armenia, and most have both children with and without disabilities enrolled.[4] According to UNICEF, approximately only 18 percent of students enrolled in special schools are registered as having a disability.[5]

Residential care institutions serve as the main mechanism for the government’s delivery of social services to families in difficult life circumstances, as well as to children with disabilities and their families, with services and staff concentrated in the institutions, rather than available and accessible in communities. As a result, many or most of the children without disabilities living in residential institutions in Armenia have been placed there due to challenging family circumstances, including poverty, unemployment, inadequate shelter, parents’ health problems, disability in the family, single parenthood, and other issues. Challenging family circumstances often compel parents of children with disabilities to place their children in an orphanage or residential special school, frequently due to the absence of community-based services to support families.

According to a 2016 UNICEF study which examines deprivation among children in Armenia in multiple dimensions, including housing, utilities, clothing, education and leisure, 64 percent of children are deprived in two or more dimensions, with 82 percent deprivation in rural areas. In terms of monetary poverty alone, 36 percent of children are poor and 3 percent are extremely poor. Poverty is more likely to affect children: although children represent only 22 percent of the total Armenian population, children represent 26 per cent of the poor population and 30 percent of the extremely poor.[6] Previous UNICEF reporting found that 54 percent of Armenian children with disabilities and their siblings live in poverty. [7]

II. Institutionalization of Children and Young Adults and Discrimination in the Deinstitutionalization Process

The government of Armenia is currently undertaking a program to transform a number of state residential facilities for children with the goal of decreasing the number of children living in institutions, and transforming the facilities to provide community-based services. The government has currently scheduled 22 residential institutions to be transformed over four years, in a UNICEF-supported program, as described in more detail below. However, Human Rights Watch research in 2016 identified a number of concerns with the government’s approach, including, in particular, that the government has no specific plans 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.

Although the material conditions in most institutions visited by Human Rights Watch appeared adequate, if basic, in terms of shelter, clothing, food, and other essential care, Human Rights Watch research identified a number of serious problems with regard to institutions in Armenia, including the lack of individual attention and nurture, a lack of privacy, and a lack of accessibility. Living in institutions, particularly for those who remain there continuously, causes emotional hardship for children, as well as their parents. There are also serious shortcomings in the preparation for children to live independently when they reach adulthood. Individuals with disabilities are regularly denied legal capacity to make decisions for themselves and so children who grow up in institutions often remain in institutions upon reaching adulthood. In some cases, the continued confinement of individuals in institutions may amount to arbitrary deprivation of liberty.

Additionally, numerous observational studies have documented negative impacts on physical, intellectual, emotional, and social development among children separated from their families and placed in institutions.[8] 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.[9] 

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.[10] For older children, the Committee on the Rights of the Child has noted, “There is significant evidence of poor outcomes for adolescents in large long-term institutions... These adolescents experience lower educational attainment, dependency on social welfare and higher risk of homelessness, imprisonment, unwanted pregnancy, early parenthood, substance misuse, self-harm and suicide.”[11] 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.[12]

As detailed below, international standards require that placement of children in residential institutions be a measure of last resort, only for short periods, and only when in the best interest of the child, and then only in exceptional cases. The CRPD calls on governments to implement a well-planned, structured, and time-bound process of deinstitutionalization of persons with disabilities, and sets out specific requirements for that process.

Children have the right to grow up in a family, and to not be unnecessarily separated from their parents. Neither poverty nor disability can be a justification or a basis for placement of children in institutions. Although the government has recognized the need to decrease the number of children in institutions, it should ensure it does so equally for children with and without disabilities.

Discrimination in the Deinstitutionalization Process

While the government of Armenia has committed to move children out of at least 22 orphanages, special schools, and night boarding institutions and transform them into non-residential centers to deliver community-based services, there are no plans to transform the country’s three orphanages exclusively for children with disabilities. In addition, the government has not sufficiently prioritized the return of children with disabilities to their birth families or identified alternative care solutions for them. A 2016 action plan on developing alternative services for children in difficult life circumstances does not refer to children with disabilities at all.[13]  

Although the number of orphanages and the total number of children in orphanages is decreasing, the concentration of children with disabilities in orphanages increases. By 2020, when the three generalized orphanages are slated to be transformed and all children from those institutions moved to alternative care, the only orphanages remaining will be specialized orphanages for children with disabilities. The failure to undertake deinstitutionalization of children with disabilities on an equal basis with other children constitutes discrimination. The government should immediately revise its policies to ensure children with disabilities are fully included in the deinstitutionalization process.

Marie Izmirlyan orphanage in Yerevan is one of the country’s three specialized orphanages for children with disabilities. The director, Hasmik Mkrtchyan, described the orphanage’s experience with the deinstitutionalization process since 2013: “In 2013 the government started a new project to decrease the number of children in orphanages. At that time the healthy children [children without disabilities] were referred to other institutions or to foster families. At that time, our orphanage had about 15 percent of children without disabilities. Year by year, the number of healthy children in orphanages decreases. They are mostly not being admitted. At the same time, children with special needs in orphanages goes up.”[14] The orphanage now has only children with disabilities. She further explained that with the 2013 change in government policy the resources available to the institution increased. “Every year I asked for additional staffing and the Ministry [of Labor and Social Affairs] supported this. As of today, we have almost all the needed specialists, and each has an individual room to work with children.”[15]

The three specialized orphanages which are not scheduled for transformation face overcrowding and, in some cases, waiting lists for children to enter. According to Mkrtchyan, “The institution has 110 children. This is the maximum. We are designed to hold 100. In each group we have two or three more children than we should.” Only 35 of these children are legally without parental care.[16]

The director of Kharberd orphanage, another specialized orphanage for children and young people with disabilities, located near Yerevan, told Human Rights Watch, “The concentration of particularly difficult children [and young adults] is increasing.” At the time of Human Rights Watch’s visit to the 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.[17]

While the government says it is prioritizing returning children to their biological families, the efforts to return children with disabilities, particularly from orphanages, appears limited. According to the doctor at the Kharberd orphanage, “I am aware of only one case in 15 years when a parent took their child [from this institution] back to the family.”[18] Mkrtchyan, the director of the Marie Izmirlyan orphanage, explained, “We still have children here because of [difficult] social conditions in the family, but we are trying address this and get them support through NGOs and charitable organizations. These children do have disabilities but lighter types, and it is possible for them to go to special schools and then be at home on weekends.”[19] She further explained that institution staff are only able to work with about 10 families at a time to encourage reunification, in part because some families of children living in the orphanage live in cities or towns far from Yerevan.[20]

Moving Children and Young Adults between Institutions

Even as the government is in the process of transforming institutions and prioritizing family-based care, Human Rights Watch found extensive evidence of children being moved out of one orphanage or institution, only to be placed in another institution. Children with disabilities who age out of orphanages may remain in state institutions indefinitely.

According to Mkrtchyan, five of the 11 children who left the orphanage in 2016 went to Gavar orphanage (two of the children were reunited with siblings living in Gavar); and four returned to their families. However, those who returned to their families are enrolled in special schools, where they live during weeks and go home on weekends and school holidays. Of the eight children transferred out of Marie Izmirlyan in 2015, two went to other orphanages.[21]

Mkrtchyan further explained that there is a large demand to place children in the orphanage. 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. Although 11 children left the institution in 2016, 15 children entered the institution.[22] Mkrtchyan told Human Rights Watch, “We try to organize adoption and send back children to families in order to have free places for additional children to enter. There are a lot of people asking to bring their children here. They are registered and waiting for places to open up. I have five families calling me regularly.”[23]

The government moved all children out of Yerevan Night Boarding Institution No. 2 in the Nubarashen district in August 2016 and plans to transform it into a community center. Of 66 children, 15 were referred to other institutions, including three children to a special school for children with hearing disabilities, although none of the former Nubarashen residents had disabilities. When the government closed the Yerevan Night Boarding Institution No. 1 (known as Koreayi Dzor) in 2015, only 15 children returned to their families, and 34 children were placed in other institutions. These placements in other institutions, including another night boarding institution and one of the state military schools under the Ministry of Education and Science, were due in part to the rushed closing and insufficient time to arrange professional support for reunification of children with their families.[24]

As a practice, officials move all children once they turn 6 years old from the Gyumri specialized orphanage and the Yerevan Children’s Home (frequently known as the Nork orphanage) to other orphanages. Children with disabilities from the Gyumri specialized orphanage go to Marie Izmirlyan or Kharberd specialized orphanages. In May 2016, the director of the Kharberd orphanage said the institution was expecting 55 children with disabilities to arrive from the orphanage in Gyumri.[25]

The government is in the process of closing the generalized orphanage in Vanadzor, to be completed in 2018.[26] According to one staff member, children have continued to arrive at the orphanage, even as the orphanage was expected to reduce numbers. She explained, “We are not allowed to have more than 70 children, so 10 children were sent to Gavar orphanage. They are children left without parental care. There was no other place to send them.”[27]

Experts on the deinstitutionalization process in Armenia caution that a strategy whereby placement of children in residential institutions remains an option will perpetuate an overreliance on institutionalized care, rather than family-based care.[28]

Starting in mid-2015, officials began to move adults with disabilities out of Kharberd and Marie Izmirlyan specialized orphanages and into the Zorag Psychiatric Care Center for young adults with disabilities in Yerevan. [29] The authorities transferred 80 young adults to Zorag in 2015.[30] Samvel Khachatryan, Zorag’s director, told Human Rights Watch that as of December 2016, the institution had 120 residents. Residents included people with psychosocial, intellectual, sensory, and other disabilities, not just people with psychiatric disabilities. Planned renovations will allow the institution to hold up to 200.[31] Notably, Zorag had previously been a night boarding institution for children, which the government converted into the first state facility of its kind for people over 18, due to overcrowding at the orphanages.

Concentration of Resources in Institutions

Human Rights Watch research found that services and trained staff to provide rehabilitation, education, and other services to children do exist in Armenia, but often remain behind the walls of residential institutions and are available only to the children living inside, rather than available in the community. This structure of services is a key factor that drives some families to place their children in institutions. It also means that many children who remain with their families and who may require or benefit from certain services and resources are often unable to access them. Because the government is not pursuing deinstitutionalization of children with disabilities on an equal basis with children without disabilities, the continued concentration of resources within institutions will have a disproportionate effect on children with disabilities.

A great number of children—within and beyond institutions—are negatively affected by the system of residential institutions and the concentration of resources in institutions. According to one expert on children’s rights and children in institutions, “The smallest problem is the number of children in institutions. There are 830,000 children in Armenia; about 400,000 most likely need some kinds of services, but have trouble getting them or don’t get them at all. There is under-inclusion of children in necessary services and over-inclusion of children in institutions. Some families might need one social worker visit per week and school supplies. Others might need income support, material support, bedding, and other, differentiated services.”[32]

For example, some of the specialized orphanages have notably sophisticated equipment and facilities, in large part due to in-kind and monetary donations, most often from Armenians living outside of Armenia, or groups representing their interests. For example, in the Kharberd specialized orphanage, there is a wing dedicated to rehabilitation, with three rehabilitation rooms, a sensory room, highly specialized rehabilitation equipment, as well as a rehabilitation doctor. “Every year we are getting new rehabilitation equipment,” the director told Human Rights Watch.[33]

The specialized orphanage for young children in Gyumri contains a large, modern, heated indoor pool, with a whirlpool. “It is quite expensive to keep the water warm. We are thinking of putting in a solar heating system,” the director explained to Human Rights Watch during a May 2016 tour.[34] The Nork orphanage has two outdoor swimming pools. Marie Izmirlyan orphanage has small indoor and outdoor swimming pools, a therapeutic whirlpool, as well as a highly specialized salt room for a treatment known as halo therapy intended to treat the lungs opened in November 2016, and supported by two international foundations.[35]

Lack of Alternatives

The concentration of resources in institutions and the lack of services available in the community is a key reason that many families of children with and without disabilities elect to send their children to residential institutions, even when they would prefer to raise them at home.

Families of Children with Disabilities

For example, according to families and experts interviewed by Human Rights Watch, rehabilitation services are not widely provided in local communities and may be cost-prohibitive in some locations where they do exist. Some nongovernmental organizations, such as Armenian Mothers in Yerevan and Astghatsolk in Chambarak, provide certain, specific rehabilitation services to children in those communities. In contrast, specialized orphanages often have a wide range of highly developed services, as detailed above, which are not accessible to children who live in the community and who might benefit from these services.

Sports facilities, such as swimming pools, which can be particularly therapeutic and beneficial to children with certain types of disabilities, are not physically accessible for persons and children with disabilities, are not available in their areas, or are otherwise inaccessible. Save the Children reported in October 2016 that parents of children with disabilities say that they sometimes have to pay double for coaches in the community to teach their child with a disability to swim.[36]

 Rosa, who placed her now nine-year-old son in an orphanage for five years, explained that rehabilitation services were the primary reasons for her decision. Rosa explained:

My son had difficulties walking. I first tried to take him for treatment in Vanadzor, but I was told that [his motor difficulties] couldn’t be treated by the local services. So, I took him to the orphanage. It was difficult, but I understood that it was necessary because he could start to walk while there. Because of this decision, my child is able to talk and walk. The local school would not have been able to teach him to walk.

Rosa stated that there are no specialists to provide occupational or physical therapy at the community school that her son attends now.[37]

Mira, mother of a 13-year-old daughter and 16-year-old Hayk, who has autism, explained that her decision to send Hayk to an orphanage in 2013 was related to the absence of support services in the community:

It was a difficult decision to bring my son [to the orphanage]. My husband is abroad, in Russia, working. He comes home only once or twice a year. It’s really difficult for me. I’m alone with the two children. … If there was a center that could take care of Hayk during the day, even for three or four hours, I wouldn’t have to send him here. If such a center could exist, I would definitely take Hayk back home to live with us.[38]

Mira visits Hayk at the orphanage a few times a week and sometimes takes him home for a week or two at a time.

Lilit’s ninth grade daughter, Ani, who has Down syndrome, has attended a residential special school in Syunik region since 2011, after attending a mainstream school for four years. Concerned about her daughter’s academic progress, Lilit moved Ani to the special school. She is satisfied with the quality of the education, educational support services, and extracurricular activities for Ani at the special school. She noted that: “All of the opportunities are in the school. Outside of the school there is no access to these services or activities for my child.”[39] The mother of a 9-year-old boy with autism at the same special school explained that her choice of school was based on the therapeutic services and educational support available in the school, as well as other opportunities, including “computers and the chance for him to play with Lego [building blocks].”[40]

One woman explained that her family circumstances had contributed to her decision to send her almost 4-year-old son with cerebral palsy to the specialized orphanage for young children in Gyumri, “I am young and my [former] husband … does not support me or my child. Only my parents are close to me. They are retired and don’t work. I am working, and taking care of my child, and not able to take care of him all the time. It is difficult for my mother to take care of him. We thought a lot about what to do and finally decided to bring him here.”[41]

The head of one regional child protection unit detailed a case involving a boy with cerebral palsy who was transferred to an orphanage at age 14 because of a lack of services to support him and his family. She explained:

The boy was in a wheelchair. The boy had friends at school and a strong relationship with his mother. As he got bigger, his mother faced a lot of difficulties helping him move. They lived in a house with a staircase and it was hard for her to carry him up and down. Their financial and social conditions were poor and they were not able to organize any rehabilitation services for him or help for the mother. At the orphanage, there are rehabilitation services not provided at schools.[42]

Families of Children without Disabilities

Many parents of children without disabilities told Human Rights Watch that they felt compelled to send their children to an institution as a result of poverty, unemployment, health conditions of other members of the family or other family difficulties. Parents noted that the institutions are able to provide their children with adequate shelter and consistent meals and ensure that their children consistently attend school.

Seda, 40, who had given her newborn son to an orphanage just two months before her interview with Human Rights Watch, said that she is out of work and has an unstable living situation, and felt that she could not provide even the most basic care for her son. “Without money I can’t buy formula. I don’t have enough breastmilk to feed him on my own. I should also buy clothes for him, and diapers. I don’t have support here to get anything. I am working, I will take two or three jobs in order to have enough money to take him home,” Seda said. Seda tries to visit the orphanage once daily to breastfeed her son. She described her feelings of seeing him, “I have so many problems; it feels like everything is so difficult. Then I see my child and I forget everything. Tears come to my eyes and I forget everything bad.”[43]

For Lusine, 48, a widow with serious health conditions, the special school in Goris was a lifeline for her and her daughter, who is now 15. Lusine lives in a basement room with no toilet or a kitchen and just one bed. Showing a paper listing all of her debts and to whom she owes money, she told Human Rights Watch:

I live in a very difficult situation. I moved here eight years ago in search of work. I have asthma, diabetes, high blood pressure, and kidney problems. I work as a street cleaner seven days a week, but it’s not enough, even for decent food. I have 400,000 dram ($838) in debts. My daughter sleeps at the school during the week, they feed her well. They look after her very well. But I want her to live with me. I want to see her, to talk to her. I want to be the one able to feed her and take care of her.[44]

Asya, 56, sent her two daughters, now 16 and 18, to an orphanage from the time that they started school, each at age six. For nearly 30 years, Asya has lived in a tiny, dark, informal shanty that leaks when it rains. She explained her decision to place her children in an orphanage:

I am a single mother. The girls’ father left when our youngest daughter was three years old, and we have no information about him. I was working, there was no one to take care of them. I didn’t have a neighbor or friend to ask. I didn’t want to leave them at home alone. In order to be able to work and not worry about my daughters, this was the main reason I placed them in the orphanage. It has also been painful for me. It is very difficult to live without your children.[45]

A couple living in the Gegharkunik region, Karen and Nina, had been forced to move into a barely habitable one-room farm building in 2013 after a conflict with family members with whom they had been living in a house nearby. They were forced to place their four children, now ages 7 to 16, in a private orphanage approximately 60 kilometers away. The couple explained that they do not have proper housing or steady work:

We don’t want our children to be there [at the orphanage], but there is no other option right now. It is very difficult. If we have the right conditions, we will bring them back. Most of all we need housing, a place to live. The other things we will somehow solve. We work with anyone who pays and is asking for help on their farm. Together we can earn about 500 dram ($1.50) per day. Sometimes people also give us food….[46]

The couple now spends a large portion of their meager income to visit their children in the orphanage, “Our major expenses are food and transportation to visit the children. We try to go every three months.”[47]

According to the director of the Children’s Home of Yerevan, also known as the Nork orphanage, for newborns to children age 6, parents place their children in the orphanage for a range of reasons. “Who comes to us? Single parents. These are often people trying to hide a child born out of wedlock because of stigma. About 80 percent of families who bring their children here don’t have a consistent living space. Some are parents who are in long-or short-term health treatment. In some cases, children are found on the streets by police, or their parents [are] in prison. Children come from as young as two to three days old up to 6 years old.”[48]

Emotional Toll of Institutionalization

Children placed in institutions and their parents consistently reported that being separated from each other takes an emotional toll on them. Senior staff of institutions similarly reported that children often show symptoms of emotional and sometimes physical distress due to the separation from their families. Children may refuse to eat, cry, and experience poor moods and anxiety.

Gohar, sent her son Artur, now 13, to a special school in Yerevan, 120 kilometers away, when he was 7. While fighting back tears, Gohar explained the emotional difficulties for Artur:

He didn’t feel comfortable at the school and refused to eat. This was his protest. Whenever he came home, he ate normally. At the beginning, we brought him home every two weeks for two or three days. But the teacher said that we shouldn’t come so often because after he returned to school, he would be more emotional. We were told to take him only during the long school breaks. I am sad when I remember those four years. We knew that my son was having difficulties and didn’t want to stay at the school, but we felt that there was no other option.[49]

Artur, who has a developmental disability, spent four years at the special school in Yerevan before his family enrolled him in a local special school. Artur struggled emotionally to make the transition. Gohar told Human Rights Watch about the emotional effects of his time away from his family:

Even after he came back home to live, he was afraid when we went out somewhere or took him to school. He thought we were leaving him. It took him time to understand that it’s not forever and that we will be coming back very soon.[50]

Twelve-year-old Armine lives in a night boarding institution in Ijevan because her parents struggle to take care of their four children due to poverty and unemployment. Armine said that she gets to go home during the summer, and is generally comfortable in the boarding institution and the school she attends near it, but the separation from her family is difficult. She said, “At the end of the summer I am crying. I miss my mother…. If there was something I could change, it would be to come home anytime we wanted. … I think a lot about coming home. I ask my friends, ‘When will I get to go home?’”[51]

Senior staff of some orphanages visited by Human Rights Watch openly acknowledged the emotional difficulties children experience upon separation from their families. The head doctor of one orphanage described the emotional experience of one boy with autism, whose parents brought him to the orphanage at age 13, but have remained involved in his life through visits to the orphanage and occasional visits with him at their home. “When the boy first came here, he was not eating. When new staff came to work with him, he would cry. He didn’t understand that his mother would come back,” the doctor explained.[52]

The director of one orphanage spoke with Human Rights Watch about the emotional well-being of children living in the orphanage, saying, “They miss their families. This means they are in bad moods very often. This is a very big problem.”[53] A doctor in the same orphanage said, “We have children who miss their parents and they feel very bad. When parents don’t visit for a long time, children get sad, think a lot about it.”[54] A doctor in another orphanage said, “I would really like some of the children to be in their families. We know it is harder for them to be here.”[55]

III. Problems for Children and Young Adults in Residential Institutions

Lack of Personalized Attention and Nurturing

Orphanages in Armenia have large numbers of staff, with typically as many or more staff members than there are children and young people. However, often in the orphanages it is only a few staff members who directly care for large groups of children at any given time. Maintaining and running a large institution requires personnel such as cooks, drivers, cleaners, maintenance staff, and others who do not directly care for children, and are part of the resource inefficiencies inherent in sustaining large institutions.

Children in orphanages and in other residential institutions in Armenia are divided into groups, typically by age, although in some cases by disability, or by a combination of the two characteristics. Children in groups typically eat, sleep, and do other activities in their group. Typically, the groups have between 10 and 12 children with two caregivers. Specialists such as a psychologist and a social worker in some cases also participate with the groups during the weekdays.[56] With such a large number of children to care for, even the most dedicated and caring staff are challenged to provide the individualized attention and care that each child needs, in particular young children or children with particular care and support needs to accommodate their disabilities.

Numerous studies have documented that a child’s healthy development depends on the child’s ability to form emotional attachments to a caregiver.[57] In his reporting on children deprived of their liberty, the UN special rapporteur on torture has reported that children “require emotional companionship and attention to flourish.”[58] Many institutions in Armenia do not provide sufficient individualized care and nurturing, due to the large groups of children. 

Lack of Privacy

The organization of children into large groups for the convenience of the institutional system also leads to a lack of privacy. In bedrooms visited at the Kharberd orphanage, Human Rights Watch researchers saw nine beds in one bedroom for girls and young women. In other bedrooms, with up to 15 beds, many were placed side by side. In the Vanadzor orphanage, Human Rights Watch spoke with girls who shared a bedroom with six other girls, or 10 other girls. One boys’ bedroom for 10- to 15-year-olds had 13 beds; another boys’ bedroom had eight beds.

Armine, 12, who has been living in a night boarding institution for six years due to her family’s deep poverty, said that she shares a room with six other girls. One of the most difficult things about the institution for her is sharing a room with so many other people. “I’d like my own room. Nothing special, just a room like all the other rooms. Sometimes we fight with each other and we don’t want to sleep in one room. There is no other place to go, to sleep. Only our room.”[59]

The special rapporteur on torture has highlighted the need for children in institutions to enjoy respect for their privacy.[60]

Lack of Accessibility

Although one of the reasons parents stated for placing their children in orphanages or other types of residential institutions was the lack of accessibility in their communities, accessibility within the schools and orphanages visited by Human Rights Watch in April and May 2016 was limited or nonexistent. Even within orphanages and schools specialized for children with disabilities, including the only specialized school for children with physical disabilities, there is a lack of accessibility for children with disabilities. Lack of accessibility prevents many children with disabilities from fully enjoying their human rights such as the right to education and the opportunity to socialize, be independent, and learn skills for independent living.

For example, according to the director of the Marie Izmirlyan orphanage, “We have no elevator and ramps, we have to carry the children. Early next year they will construct a ramp and elevator. The new construction will help staff. We will also create a small ‘town’ for blind children. The children who are blind will learn to move independently.[61]

The director of the Kharberd orphanage, where half of the 221 residents use wheelchairs, stated: “The elevator is often broken. We often have to renovate it. I must frequently call the repairman to fix it.”[62] He also told Human Rights Watch that the orphanage has few accessible toilets and showers.[63] In Yerevan Special School no. 17, the only state institution specialized for children with mobility disabilities, the building was undergoing a complete renovation, although at the time of Human Rights Watch’s visit in April 2016, there was no working elevator, only a ramp to allow children to move from the first floor to the second floor.

Human Rights Watch interviewed Taguhi, 11, who uses a wheelchair, in an orphanage where she has lived since she was 6. She said that she is largely confined to a small space in the orphanage, where she eats, sleeps, has lessons with a teacher who visits the school, and socializes. “I can only move in my wheelchair a bit. It is a basic wheelchair. Someone always helps me move around. I am mostly staying in two rooms,” she told Human Rights Watch.[64]

The Ministry of Labor and Social Affairs runs a center in Gyumri, which provides after-school and social supports to families in vulnerable situations in the community with the goal of “preventing the placement of children in orphanages and residential schools,” according to the center’s director. However, these services are not accessible to all children with disabilities. “We have between 8 and 10 children with disabilities, but they can take care of themselves. Our building is not accessible,” the director stated.[65]

Lack of preparation to lead independent lives and infantilizing adults with disabilities

Staff at residential institutions do not do enough to develop children’s life skills or prepare children to live on their own once they become adults. This affects both children with disabilities and children without disabilities, but is more significant for children with disabilities. As a result, young people with disabilities are denied the opportunities their peers take for granted, such as having a job, developing a circle of friends of their choosing, finding a life partner or spouse, or raising children. Officials at institutions confirmed that they do not see children with disabilities as capable of autonomous decision-making.

Many children without disabilities stated that they did not feel sufficiently prepared for independent life when they left the institution. For example, Ellen, who is now 20 and studying at university to be a teacher, lived in a generalized orphanage for nine years because her widowed father felt he could not raise her and her two siblings on his own. Regarding her preparation for life beyond the orphanage, she said, “At the orphanage we learned that someone does everything for you. When we left, we realized we had to do everything ourselves.”[66]

Elmira, who has lived in a generalized orphanage for four years and recently turned 18, explained that she had not received guidance or information about living on her own. “No one has talked to me directly about what it is like to leave. The director called us [18-year-olds] together and explained that it’s possible to leave. … Maybe this summer, I will leave, but I don’t know. I turned 18 in December 2015. Sometimes I want to leave, and sometimes I don’t want to leave. I think about living with my mother; I think about living on my own.”[67]

Tigranuhi Karapetyan, director of the Echmiadzin-based organization Mer Doon, which supports young women without disabilities who are aged out of orphanages by helping them enroll in higher education and providing a transitional group home for approximately 12 young women. She described these challenges: “The young women don’t know how to cook or clean, hygiene, and these sorts of things as well as they need to. In orphanages, everything is done for them. Here, they are learning that they need to know how to prepare everything themselves.”[68]

For young people with disabilities, the lack of preparation for independent life, combined with the denial of legal capacity, as described below, may mean that they will most likely be compelled to remain in the orphanage where they lived as children, or be transferred to the newly-established Zorag institution for adults with disabilities.

For example, Arpi, a lifetime orphanage resident in her early 20s, who has a mild intellectual disability, reported that she had little preparation to live on her own. She is learning hairdressing and clearly articulated some of the things she would want for herself in an independent life. Arpi told Human Rights Watch:

I grew up here. Now I go to vocational college. I have learned a few things there already. I really want to learn to use the bus and go to the college on my own. I am thinking about living alone, to have lots of friends, and my own apartment. I would prefer to live with someone, a friend. We could share the place together. I think about being out of this institution, even for a few days. I dream to talk with different people.[69]

Edmond, in his mid-20s, who has lived in institutionalized care his whole life, studies at a vocational institute and is learning a trade, and said that the hardest thing about living in the institution is not being able to leave more frequently to experience different aspects of life in the community, which would be essential to help him prepare for life outside of the institution. “All of the time that I have been here [17 years], it’s been with the same staff. Sometimes we go out. We are invited to some places, the theatre, other events. I really like going out. Other children get tired, but I always need and want to go out.”[70]

Edmond articulated some of the things that he would like to have in an independent life, but explained that the confines of the orphanage limit his ability to develop relationships, have his own family, and work to sustain himself and his family, and he is not given support to live the life he would choose. “I don’t have a home and I don’t have work, and I would have to have work to take care of me and my family. To have a girlfriend or a wife, I would need to have these things. I can’t imagine how to solve this. So, I think that I can’t have a girlfriend,” said Edmond.[71]

Officials at institutions confirmed that they do not see children with disabilities as capable of autonomous decision-making, and consistently refer to young adults as “children” even when individuals in their care are over 18, and even in their 20s and 30s. Among other issues, they deny that young people with disabilities are capable of having mature, healthy romantic relationships with others. Officials also do not provide appropriate sex education.

For example, one doctor told Human Rights Watch, “As the children have [intellectual and developmental] disabilities, they do not even understand … about romantic or sexual relationships. They don’t even know about such things, and they don’t have such feelings. We cannot talk about such things between the children…. Some of them are in a very heavy state. They don’t understand. I do not think this is an issue to discuss with them.”[72] Another institution doctor stated, “We never noticed relationships because they feel like one family, thinking of each other as brother and sisters. They are protecting and helping each other. Sometimes they argue. We have no experience of anyone having sex.”[73]

There are few community-based services to support people with disabilities with the transition out of orphanages or for independent living in adulthood. Those services that are available are run by nongovernmental organizations (NGOs), such as Mer Doon, based in Echmiadzin, which provides services for young women without disabilities, and Jermik Ankyun, which supports adults with disabilities in Yerevan. Donors and government agencies should support these types of groups so that they can expand their services.

Denial of Legal Capacity

Legal capacity is recognition under the law of a person’s power or possibility to act authoritatively on their own behalf enabling them to exercise rights and assume obligations, to make binding decisions and have them respected. It facilitates personal freedom, enabling an individual to secure employment, get married, inherit property, vote, control his or her financial affairs, sign a contract, etc. It also protects the individual against unwanted interventions.[74] Under Armenian law, children lack full legal capacity.[75] Armenian law guarantees every person who turns 18 the right to full legal capacity.[76]

In Armenia, upon reaching adulthood, a person with intellectual and 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.[77] There is no mechanism for partial deprivation of legal capacity for persons with intellectual and psychosocial disabilities in Armenia. Reasons for partial deprivation of legal capacity include addiction to alcohol, narcotics, or gambling.[78] 

Human Rights Watch found that authorities regularly 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.[79] Individuals with disabilities, who as children live in institutions may not be given the opportunities to make their own choices about where they live or other aspects of their lives even after they turn 18. Armenian human rights organizations have also documented serious concerns with the practice of depriving adults with intellectual and psychosocial disabilities of legal capacity.[80]  

In one case documented by Human Rights Watch, Edmond, who is in his mid-20s and has a mild intellectual disability, articulated to Human Rights Watch that he is not given the option of leaving the institution where he has lived since childhood. “I cannot answer who decides that I stay here. You could ask the director. I have been here since I was 8-years-old and I will be staying 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.”[81]

According to the director of Marie Izmirlyan orphanage, when children turn 18 they can be returned to their families, if their families accept them. Families, if they are the legal guardian of the individual, can also authorize their adult children to be placed in an institution for adults. Children whose parents have relinquished their parental rights and who have not been adopted by 18, “are automatically moved to Zorag, an institution for people with disabilities older than 18.”[82] The deputy director of the Marie Izmirlyan orphanage similarly articulated the dominant role the authorities have in deciding a child’s future placement in institutions. She told Human Rights Watch, “When a child turns 18, we send information to the ministry [of Labor and Social Affairs] that we have this kind of child and request for the child to be referred to a corresponding institution. We report the disability, their health history, particular issues. … Most go to Zorag. If there are psychiatric issues, children are sent to psychiatric centers.” [83]

Orphanage staff interviewed by Human Rights Watch avoided answering specific questions about how legal capacity for adults could be ensured or on any concrete mechanisms that exist for considering the personal views of the individual about their continued placement in an institution.[84] In a letter to Human Rights Watch, the Ministry of Labor and Social Affairs reported, “Applicants have appropriate legal status prior to entering social protection institution,” without additional details, in response to a question about how many adults living in state institutions have legal capacity.[85]   

The director of the Kharberd orphanage explained that many children who turn 18 remain in the institution, and indicated that no steps are taken to ensure those who turn 18 can exercise their legal capacity. “After 18, the socioeconomic problems are not solved. … All adults in wheelchairs stay here.” As stated above, 127 young adults live in the specialized orphanage in Kharberd.[86] The director also indicated that the lack of alternatives to continued institutionalization lead officials to make decisions to keep children in residential institutions. “We have one young man who had psychotic problems. We have to keep him here. After 18 he should go to the psychiatric hospital. I don’t think this is good. I think there should be some other option,” he said.[87]

According to the director of Zorag Center for Psychiatric Care, which has 120 adults with disabilities, “People will never go anywhere else. They will remain in this institution for their whole lives.”[88]

The absence of social services should not be a justification for denying legal capacity to any individuals who turn 18. The government should urgently reform its law on legal capacity and guardianship for adults and put in place a system of assistance and support in decision-making that respects the autonomy, will, and preferences of the person with a disability. The government should also create supported living and relevant services to ensure people with disabilities can enjoy their rights to autonomy and life in the community, among other rights.

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. According to a lawyer at one generalized orphanage, “According to the law, when they become adults, the orphanage has no rights or responsibilities to them. There are no cases when we can keep guardianship. They are considered adults. We have people above 18 living here, as is their choice. We discuss everything with them and take their decisions into consideration.”[89]

The Government’s Obligations Regarding Legal Capacity

The right to live in the community for persons with disabilities is intricately linked to the rights of equal recognition before the law and to exercise legal capacity on an equal basis with others guaranteed by article 12 of the CRPD. Individuals with disabilities are particularly vulnerable to placement in institutions because they are often deprived of their right to make essential life decisions including the choice to leave institutions. Therefore, to ensure the right of children and young people to live in the community, states should also respect the right to the full exercise of legal capacity upon reaching adulthood.

Under international human rights law, every person has the right to recognition as a person under the law.[90] This recognition as a person comes with the presumption that a person can make life decisions on his or her own behalf. The CRPD requires states to recognize that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” that persons with disabilities can act in their own best interests and that, when needed, they should be given support to exercise their legal capacity.[91]

A supported decision-making system should be a regime of support for the individual’s exercise of rights, a process by which the will and the preferences of the person are fully respected. Within this support system, a state should ensure safeguards to prevent abuse. These safeguards should ensure that the support provided is proportionate to the person’s circumstances, limited in duration, free from conflicts of interest, and subject to regular, impartial review by an independent body.[92]

The government should review its own procedures for placement of children who turn 18 and young adults into institutions, to ensure that such placement does not constitute a deprivation of liberty, and establish adequate safeguards to protect against any arbitrary deprivation of liberty.[93] The guarantees of liberty and security of the person, and the right to challenge any deprivations of those liberties, is set out in article 5 of the ECHR and article 9 of the ICCPR which states, “no one shall be deprived of his liberty except on such grounds and in accordance with such procedures as are established by law.”[94] The CRPD provides additional protection against deprivation of liberty for persons with disabilities, particularly the right not to be detained on the basis of the existence of a disability. There should therefore be some basis, which does not discriminate based on disability, underlying any deprivation of liberty.[95]

IV. Lives Transformed

Human Rights Watch interviewed families who were able to have their children return home after living, often for an extended period, in institutions. These cases included both children with and without disabilities. In other cases, parents who considered sending their children to residential facilities received necessary support from nongovernmental organizations, including such assistance as housing, food, clothing, and school supplies, to raise their children at home.

In a May 2016 interview with Human Rights Watch, Mariana and Gevorg, who live in Yerevan and own a small business, described their time in the hospital immediately after the birth of their daughter, Inessa, August 2009. Gevorg began:

When Inessa was born … the doctor said she had Down Syndrome. Our family doctor, who was very close to us, said that the child will not live long. She said it could even be as short as a few days… She explained the possibilities of giving up our child. We ended up signing the paper that we abandon our child. … It was five or six days after the birth. My wife had health complications and she was not well. For five years we didn’t have any information about Inessa.

Mariana and Gevorg continued, describing their search for Inessa beginning in early 2015:

A year-and-a-half ago our oldest child, our daughter, who is 25, was in a bad car accident. I prayed to God to help my daughter, … and promised that I would look for Inessa. … We found a relative who knew someone working at an orphanage. We asked him for support. We found Inessa thanks to that person. She was in the Nork orphanage for five years. They moved her because of her age to Marie Izmirlyan. I went to Marie Izmirlyan and explained the situation: “If we had known she would live, we wouldn’t have abandoned her!” They understood us. They helped us bring Inessa home.

After finding Inessa, the couple brought Inessa home to their house in Yerevan. Gevorg described the change for both Inessa and for them, now that they are reunited:

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. We are sure she can understand lots of things. … Inessa is a blessing. If we didn’t trust our family doctor, we never would have abandoned her. Now I hope everything will be alright.[96]

In another case, Aravot, a nongovernmental organization with programs to support families returning to their homes and to prevent children from institutions, helped Gohar, 36, and mother of two, bring her children home from a residential school in Gyumri with more than 100 children.[97] Gohar’s children lived there for nine years. Aravot has helped the family with food, school supplies, books, shoes, and clothing. According to Gohar’s daughter, Hripsime, 16, “It was ok at the school. We were playing. I had friends there. But of course it’s better to be at home. We are with our mom. It’s warmer here.”

Gohar lives with her mother and brother who both have disabilities. In addition to disability pensions, the family receives a social pension of 28,000 dram ($58), which they spend mostly on utilities. “It will be difficult when Aravot support ends, and we will need to think more about how to pay for food,” Gohar said. “But, no matter how bad it will be, I won’t send them back to the residential school.”[98]

***

Anna, now 11, spent five years in an orphanage because her mother, Nara, who had endured several years of domestic violence and a divorce, was unable to care for her. Nara explained: “After my divorce, my husband kicked me out, and I didn’t have any place or any way to live.” In late 2015, Nara was able to bring Anna home, with the support of nongovernmental organizations who provided food, furniture, and a cow to help sustain her family. Nara still lives in poverty, and earns most of her money from selling milk from her cow, milking cows for others, as well as some seasonal agricultural work. “What’s most important is that my child is with me now.” Nara said it was Christmas time when she brought Anna back home to live with her. “It was the happiest Christmas we have ever had.”[99] As Anna told Human Rights Watch, “The hardest part for me [in the orphanage] was that I was not with my mother. Last year at Christmas they said, ‘What do you wish for this Christmas?’ and I said, “I would like my mother to come pick me up. And they said, ‘Tomorrow your mother will come.’”[100]

***

In another case, Heghine, 30, a mother of five children ages 2 to 12 living in Gyumri, told Human Rights Watch that she had considered placing her children in a residential school in 2015. The family faced serious financial difficulties and was living in bedrooms in dormitory-style housing with no water supply. Heghine described the family’s poverty: “We were in a very poor state. We had no money for school supplies or clothes. Food we only got by loans, without paying.”[101] When their youngest child was born and had serious, unexplained seizures, their situation became even more acute. “When my daughter was born, my husband was in Russia looking for work, but he came back to help take care of her,” Heghine said. When she applied to the regional government for admission of her four older children to special school, they referred Heghine to Aravot. With Aravot’s support, as well as housing provided by the local government after her husband’s death, Heghine’s children live with her and attend a local school. [102]

V. National and International Legal Obligations

National Legal Obligations

The Armenian constitution provides that everyone shall have the right to live in an environment favorable to his or her health and well-being.[103] The law on the rights of the child provides that every child has the right to the living conditions necessary for full physical, intellectual, and spiritual development. When parents or legal guardians are unable to provide the appropriate living conditions, the government should provide assistance.[104] The law also states that in cases when there is no opportunity to place a child in alternative family care, the government should place a child in an orphanage or residential school. The law also requires residential institutions to create living conditions “close to family atmosphere.”[105]

Armenian law states that the priority for organizing the care and upbringing for children without parental care should be in the family with support to families to care for and raise these children. The law also provides a number of basic guarantees for children without parental care regarding inter alia, education, medical care, housing, and free legal services.[106]

Delivery of social services is guided by several principles including “protection of human and civil rights and freedoms, respect for human dignity.” National legislation is predicated on principles such as nondiscrimination and prioritizing children for social services. The benefits system is a mixed system of cash transfers and other service benefits, based on a scoring method that assigns each family a vulnerability score. The main types of social support include: consultation, rehabilitation, in-kind support, shelter, care, legal assistance, pensions and other cash support, employment services, and other social services.[107] Services are aimed to meet a person’s or family’s social needs and to prevent or alleviate “a difficult life situation.”[108] The 2014 law on social assistance introduces a system of “integrated social services” to provide comprehensive, coordinated services based on an assessment of the comprehensive social needs of a person or family. The law introduces the idea of social case administration and emphasizes the role of social workers.[109]

The 2016 UNICEF study on poverty and deprivation among children in Armenia recommended that social assistance be strengthened both in targeting and quantity, in order to effectively tackle child deprivation.[110]

Children with Disabilities

Armenian law guarantees children with disabilities the opportunity to receive basic and vocational education, employment, social rehabilitation, and to enjoy full participation in public life.[111] Children registered with disabilities are entitled to social pension payments, regardless of need,[112] as well as free medical care and rehabilitation services.[113] Experts have identified shortcomings in the actual availability and delivery of these services.[114]

Draft legislation on protection of the rights of persons with disabilities and their social inclusion is currently pending in parliament. It would bring a number of important changes to the legal framework for rights-based protection of people with disabilities. [115] The new law calls for accessibility in all aspects of public life, as well as social inclusion, and prioritizes the rights of children with disabilities. The law also aims to ensure that people with disabilities enjoy the freedom to make their own choices, including “freedom of choice for accommodation, education, occupation, employment, [and] social and medical assistance.” Experts remain concerned that the draft law does not specify a responsible body to monitor implementation of the law nor does it establish sanctions for violations of the law.[116] The government should ensure that the law is in full compliance with the CRPD.[117]

International Legal Obligations

As party to the Convention on the Rights of the Child, Armenia is required to recognize the right of every child to a standard of living adequate for the child's physical, intellectual, spiritual, moral, and social development. The parent(s) or others responsible for the child have the primary responsibility to secure the conditions of living necessary for the child's development. States Parties, in accordance with national conditions and within their means, shall take appropriate measures to assist parents and others and shall in case of need provide material assistance and support programs, particularly with regard to nutrition, clothing, and housing.[118]

States should also ensure that children are not separated from their parents unless that separation lies in the child’s “best interests.”[119] The United Nations Guidelines for the Alternative Care of Children additionally state that financial and material poverty should never be the only justification for the removal of a child from parental care, for receiving a child into alternative care, or for preventing his/her reintegration, but should be seen as a signal for the need to provide appropriate support to the family.”[120] 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.”[121]

The Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD) oblige Armenia to ensure that children with disabilities enjoy their rights without discrimination. The treaties require Armenia to consider children with disabilities as members of society with rights on an equal basis as others and to remove barriers that prevent children from full inclusion in society.[122]

The CRPD states: “In no case shall a child be separated from parents on the basis of a disability of either the child or both of the parents,” and requires states, in case the immediate family is unable to care for a child with disabilities, to “undertake every effort to provide alternative care with the wider family, and failing that, within the community in a family setting.”[123] States should also “prevent concealment, abandonment, neglect and segregation of children with disabilities.” As part of this, states should “undertake to provide early and comprehensive information, services and support to children with disabilities and their families.”[124]

The Committee on the Rights of the Child, the UN expert body which monitors implementation of the treaty, has stated that children with disabilities “are best cared for and nurtured within their own family environment.”[125] The Committee has also called on states to establish programs to move children with disabilities out of institutions, returning them to their biological or extended families or placing them in foster care, and providing children’s families with systematic support to raise children at home.[126] The Council of Europe’s Committee of Ministers has issued recommendations to states on actions to ensure full inclusion of children and young persons with disabilities into society and on deinstitutionalization and community living of children with disabilities.[127]

VI. Failure to Guarantee Quality Education to Children with Disabilities

Guaranteeing inclusive education is the best possibility for a child with a disability to become a full participant of society.[128]

-Narine Manukyan, director, Mothers of Armenia, Yerevan, April 12, 2016

A number of serious shortcomings in mainstream schools and in specialized schools impede the ability of many children with disabilities to enjoy a quality education on an equal basis with others, as required by the Convention on the Rights of Persons with Disabilities (CRPD). These failures constitute discrimination against children with disabilities. Schools rarely provide sufficient reasonable accommodations to facilitate the learning of each child with a disability, as detailed in this chapter.

The Armenian government has committed to making all primary and secondary schools (compulsory education, grades 1-9) inclusive for children with disabilities by 2022. Currently, of 1,384 schools in Armenia, 284 are considered “inclusive.”[129] Going forward, the government is approaching inclusion on a province-by-province basis, with all schools in a given province required to enroll and educate all children.[130] Schools receive additional funding for each child with a disability enrolled in the school.[131] According to the Ministry of Education and Science, for the 2016-2017 school year, 6,700 children with “special educational needs” are enrolled in mainstream schools providing inclusive education. There are a total of 2,134 children enrolled in special schools.[132]

Some 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 school week. Despite attending so-called inclusive schools, 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. As a result of insufficient staff, including in so-called inclusive community schools, as well as in some special schools, a parent, most often a child’s mother, needs to remain with the child in the classroom to support him or her.

Several NGOs working with children with disabilities and their families cited serious concerns with the way that inclusive education is practiced in their communities. According to Hakob Abrahamyan, of Pyunik, an organization providing services to people with disabilities, “As of today, inclusive education is only integration, not equal opportunities. This is the opinion of parents coming to our center. … The major concern is that their children aren’t given the support they need to achieve academically. They go to school and only socialize with children. They are left out from the classwork.”[133] Another expert stated, “Schools say that they are inclusive and ready to take children with disabilities but they are not.”[134]

According to Armen Alaverdyan, director of the disability rights organization, Unison, “In reality, schools are not accessible for children with any disability, only children with minor disabilities, often minor intellectual or developmental disabilities. The inclusiveness of the schools is simply the opportunity to attend classes. Children attend with parents, only communicate with parents and not with teachers, not with kids. We don’t see accessible facilities inside schools, such as toilets or gymnasiums. The approach is a concern for us, in that it focuses on ‘mercy and tolerance’ rather than equality. We see it reflected in the media, with inclusive education presented as a ‘charity activity.’ The government is more focused on scale and achieving as many so-called inclusive schools in the shortest amount of time.”[135]

Human Rights Watch also found that children with disabilities in Armenia 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 accommodations. 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 comprehensive, quality education. These children typically have little or no interaction with classmates or other peers. Some children with disabilities are completely left out of the educational system due to the lack of accessibility in schools and in their communities, the failure of schools to guarantee teachers reach children for home education, as well as parent’s fears of stigma and discrimination against their children and the family.  

Lack of Reasonable Accommodations

Parents, children, and experts consistently described the lack of accessibility and of reasonable accommodations for children studying in inclusive schools as well as for some of those studying in special schools. The government’s failure to provide reasonable accommodation constitutes discrimination.

Lack of Physical Accessibility

Many people interviewed by Human Rights Watch explained that the lack of basic physical accessibility in nearly all schools hinders children’s ability to receive a quality education. Children often rely on other students, parents, and teachers to assist them in entering and moving around buildings. In some cases, physical barriers prevent children from attending schools altogether or create significant challenges for children to attend schools. The government has no comprehensive approach to ensure physical accessibility in schools. Susanna Tadevosyan, director of Bridge of Hope, an NGO that promotes inclusive education and supports families of children with and without disabilities said, “Physical accessibility in schools, at best, starts and ends with [entrance] ramps.”[136]

Mari, a fifth grader, has a physical disability that has affected her physical growth and makes it difficult for her to walk and use her hands completely. Although she attends an inclusive school, and thrives academically, the school has very low physical accessibility. “The best thing about my school is increasing my knowledge,” she told Human Rights Watch. Mari has won language and math competitions at her school. But, Mari has to overcome significant obstacles just to get through her day at school. There are no ramps, lifts or elevators anywhere in the school. “It is difficult to go up and down the stairs. I use the railing to pull myself up. It’s too difficult for me to do it alone, so my classmates help me. They carry my bag and hold my hand.”[137] Mari also avoids eating and drinking in the mornings because the one toilet that is somewhat accessible to her is in the boys’ bathroom and two floors below where her classes are.[138]

Luisa, 18, who uses a wheelchair, studies in an inclusive school in Gyumri. After many years of attending programs at Aregak [Little Sun], a local center run by Caritas Armenia which provides services to children with disabilities and their families, four years ago Luisa enrolled in school, with the centers help. Luisa is happy to be in school and especially likes studying Armenian and having friends. “I have lots of friends at school and for four years I have been able to love them, and they love me,” she said. She imagines becoming an English teacher or a computer specialist.

However, Luisa has to overcome significant obstacles to achieve her dreams, as the school she attends is largely inaccessible for her. As she explained:

I can move around only in my wheelchair. Everyone is helping me. Teachers and students, but mostly students. It is difficult when there is no one to help me. There is a ramp constructed for me to get into the part of school where I do my inclusive [individual] lessons, but it’s too narrow and it’s difficult for me to get onto it. When the other students go outside to play, I wait in the classroom…[139]

Aida, 23, began to have difficulty walking following a serious virus she contracted when she was 17 and had just started as a nursing student at Gyumri State Medical College. She relied on friends every day to enter the building, since she couldn’t climb the 10 steps outside the building where there was no railing. Inside, she said, it was easier, because she could use the railing to help pull herself up the stairs. There were no elevators, lifts or ramps anywhere inside the college.

Although she was able to complete her studies, it was with difficulty. “The physical conditions of the college, especially the steps, this was a big, everyday issue for me,” said Aida.[140]  

Narine Manukyan, the director of an organization that supports children with disabilities and their families, explained that parents can at times solve particular accessibility issues to help facilitate children’s education. However, the need for parents to take this step places the burden on them to solve accessibility issues and can reflect schools’ lack of readiness and preparation to educate children with disabilities on an equal basis with others. She explained, “We are able to solve problems. For example, parents ask principals to move classes to the first floor. But it shouldn’t be that way. It becomes a reminder every day that the school sees our child differently.”[141]

Lack of Proper Sanitary Facilities

Children with disabilities and their parents repeatedly cited the lack of proper sanitary facilities, namely accessible toilets, in so-called inclusive schools, as impediments to their children’s education. For example, Luisa, 18, who uses a wheelchair and attends an inclusive school, said, “I don’t use the toilet at school. It’s not possible for me. I wear a diaper all day from the time I leave my house. At home and at the Aregak center [for children with disabilities and their families] I can use the toilet.”[142]

Gohar told Human Rights Watch that her two children, Artur, 13, and Gegine, 9, attend a local special school just two to three hours, two days a week, where the children with different types of disabilities have individual lessons with a special education teacher, a speech therapist, and a psychologist. One of the issues limiting Artur’s and Gegine’s attendance at school is a lack of an accessible toilet or anyone to support the children in using the toilet. Gohar explained, “Gegine always wears a diaper the whole day at school. I help Artur use the toilet at home before school and when he gets back. If he says he needs to use the toilet at school, they say that there is no one to take him.”[143]

Lack of accommodations for children with sensory disabilities

Tigran, 8, who has a hearing disability, is enrolled at an inclusive school in Goris. However, Tigran does not study together with his peers in the first grade classroom. Because of a lack of accommodations for his disability, Tigran receives only a few hours of individual instruction per week. Tigran’s mother told Human Rights Watch:

For the first month, he studied in the classroom for two hours per day, but he could only hear a bit of what was being said. He was interested to learn and participate, but he couldn’t hear. It made him upset and he would cry. Now, he only goes to individual lessons 45 minutes per day with a speech therapist and a psychologist. He is only in school for only those 45 minutes.[144]

Another child in the same school, Anahit, 12, who also has difficulty hearing taught herself to read lips, and can read and write without difficulty, according to her mother. However, because of the rigid curricular expectations, Anahit has fallen behind in social science and history because she cannot communicate orally to answer questions in the classroom. The school does not provide an alternative method, such as written responses, for her to answer questions.[145]

According to a staff member at an inclusive school in Yerevan, the school has no children who are deaf, and sign language is not an option. “We don’t use sign language; it’s not in the school curriculum. It could only be taught as a separate subject.”[146]

According to the director of Agate, a disability rights organization in Gyumri, their region, Shirak, also faces a lack of sign language instruction. Most classrooms are focused on oral instruction, also making it difficult for children who are deaf or with limited hearing. “In Shirak province, you won’t be able to find sign language instruction in schools. To find it, people have to go to Yerevan to the one school which teaches sign language. Parents in our region don’t want to send their children to Yerevan. As a result, there is low or no literacy among deaf people here. Among our beneficiaries, some didn’t even go to school,” she told Human Rights Watch.[147]

In some cases, it does appear that inclusive schools are implementing accommodations for children with hearing disabilities. Narine, who is 12, and has difficulty hearing, told Human Rights Watch about the accommodations she receives at an inclusive school in Vanadzor. “I go to an inclusive school; it’s near our house. The teacher always gives me a seat near the front. Sometimes when I don’t understand what we’ve been told to write, the teacher speaks to me slowly or gives me the instructions in writing. I’m asking my teacher to check my work. I’ve always been supported. It’s good,” Narine said.[148]

According to Armen Alaverdyan, the director of Unison, inclusive schools have made little progress in educating children who are blind, such as providing adapted material. He explained, “For blind children, the only real option is to attend special school. They can have success in attending university. All blind students in universities are from special schools.”[149]

Lack of other reasonable accommodations

Elmira lives in central Yerevan with her son Goryan, 11, who has cerebral palsy. Elmira is educated as a teacher, but has not worked since Goryan was a baby because she cares for him at home full time. She described the lack of reasonable accommodations at the school:

I enrolled him at the local school at age 6 and asked for home education. He can’t sit still [because of his disability]. He constantly moves. Even if I am with him, it is just impossible to imagine going to school. … We don’t have a wheelchair that is comfortable for him. I must hold him all the time. I have to carry him up and down the stairs. It’s very difficult. Each year, school officials invite him to study in the school. In the school itself, there are some other children with disabilities, but there are just minimal conditions. Who is going to sit with him? There is so much that he can’t do. It’s hard, and as he grows, it gets even harder. I want to help my child so that he could be even a bit independent.[150]

As noted above, Gohar’s children, Artur, 13, and Gegine, 9, attend a local special school just two to three hours, two days a week. They do not participate in the classroom because the school has failed to accommodate her children’s difficulty sitting still, on account of their disabilities. “My children are not able to sit still for long, so they are not learning any subjects,” Gohar said.[151]

Yuliana is 13 and studies in seventh grade in a Yerevan mainstream school. She has a disability that affects her musculature, including her ability to hold a pencil or pen and write for an extended period. However, Yuliana can easily use a computer. “There is a computer at school, it’s comfortable. The mouse is hard to control, but typing is easy for me,” she said.[152] However Mariam, Yuliana’s mother, said that the school does not allow Yuliana to use a computer to complete her assignments or exams. The failure to provide this simple accommodation as well as a lack of individualized approach to Yuliana’s education has caused Yuliana to fall behind academically.[153] According to Mariam,

Yuliana writes as much as she can but it is very little. As a result, she has fallen behind her classmates. The school has never suggested any other options. She goes to school really just to spend time there. They give her handicrafts like knitting to do at her desk, or sometimes something to read so she doesn’t get bored and tired doing nothing in class. The teachers only say, ‘Let her do just what she can do.’ There are 37 children in the class. They can’t focus on my daughter at all.[154]

Lack of individual educational approach inside the classroom

Human Rights Watch found that many schools in Armenia do not provide an individual approach to children’s learning, including for children with disabilities, based on their needs and their personal learning styles and interests. There are limited efforts to provide reasonable accommodations to facilitate children’s learning, such as providing accessible educational material, modified ways of teaching, and modified curricula.

This is exacerbated by class sizes of up to 36 or 37 children in the schools, with only one teacher, as described by children, parents, and school staff. Very few schools have aides, such as paraprofessionals, whose role is to support children’s participation in education, constructively addressing behavioral challenges, providing personal care assistance, or taking on other support roles, but are not fully licensed teachers. As described above, children with disabilities may spend time in classrooms, but are regularly pulled out for individual lessons.

For example, regarding class size and limited individual instruction, Rosanna, 12, who has a learning disability and attends an inclusive school in Goris, explained that the large number of students and lack of other staff in the classroom hinders her education in an inclusive environment. She only receives academic support outside of the classroom. “I am in sixth grade. There are 36 children in my class, all in one classroom. There is only one teacher per subject. The lessons are hard for me. The specialist teachers are taking me for lessons to a separate room, and we are working together.”[155] The biology teacher in the same school told Human Rights Watch, “What I would want more than anything is to have someone who could support a child who has particular needs in the classroom directly. The special education teachers can’t be in so many classrooms at once. No matter how much I want to, I can only support an individual student so much. I have 32 children in my class.”[156]

Parents staying with children at school

Human Rights Watch spoke with numerous parents with children enrolled in inclusive community schools who remained with their children at school because of the absence of reasonable accommodations to support the child’s learning needs and full inclusion in the classroom. We also spoke with some parents whose children attend special schools and who also remained with them during the day. However, a number of parents reported that they enrolled their children in special schools, which often had smaller classes and more specialized staff, in order to secure an educational environment for their children that did not require a parent to be constantly present.

Marine’s 15-year-old son, Edmond, who has autism, studies in seventh grade at an inclusive school in Yerevan, where he started in second grade. Due to the lack of sufficient staff, Marine must stay with Edmond all the time. She described her role:

Even now, I stay with him at school. I am always with him. He has individual lessons with specialists on his own, but otherwise, I am always with him. I’m not sure he would be studying if I wasn’t there. He could get up and wander around, go out of the classroom. I’m there to keep control…. We come for three lessons, two days a week. In my opinion, we need an additional specialist or teacher. Of course, I would leave him on his own at school if there was someone who could be next to him, to give him instructions and help him. That would be excellent.[157]

Elena, whose son Hayk, 15, has an intellectual disability, explained to Human Rights Watch that staying with him all day during the one year he studied at an inclusive school led her to send him to a special school instead. Elena said:

I was at the school the whole day, to the end of the lessons. The teacher said she could not work with my son individually, since there were 30 other children in the class. I had to help with everything, taking him to the toilet, eating, taking his jacket off. At the special school, I don’t face these issues.[158]

Anush’s son, Hakob, 12, has cerebral palsy and now receives home education due to the lack of reasonable accommodations for him in their neighborhood school in Gyumri. She explained, “I would very much like to take him to school and I tried to do so, but could not do it. If I took him there, I would have to be with him all the time, which was impossible. I do all of the housework, cooking, cleaning, taking care of my other child and my husband.”[159]

Even when she stayed with Hakob at school, due to the lack of accessibility, Anush was not able to carry him to all parts of the school building, and Hakob was excluded from many of the typical school activities that his classmates enjoyed. Anush described the difficulties:

I had to… take him around [the school] and also to the toilet. There were steps to the toilet, which I could not climb with him. Chess class was on the second floor and I could not take him upstairs, as there were only steps there…. The cafeteria was on another floor and Hakob could not get there.

Anush’s presence also interfered with the teacher’s developing a relationship with Hakob as part of the academic process. “The teacher was not ready [to teach Hakob]. She did not know how to interact with Hakob, and always called on me to help him.”[160]

Anush felt that her two sons should have equal treatment and opportunities to be at school without her constant support. “At the school, there should be a lift… toilets should also be adapted. Inclusive school should mean a school just like for our other son. He goes to school, and I can prepare food and feed him when he comes home.”[161]

The psychologist at one inclusive school visited by Human Rights Watch said, “As you can see, the school is not accessible. We have one child, a first grader, who is in a wheelchair. We [the staff] … help to move him around, and one of the parents stays, usually the mother, to help move him and support him if he needs it.”[162]

Assistants in some schools

Some schools employ assistants who work with children to support their basic needs, although not in an academic capacity. For example, at inclusive School No. 20 in Yerevan, the psychologist said, “We have one helper, an assistant. She helps children go to the toilet. Children can basically do it themselves, but she can help them support them, ensure their safety. She also helps some of the children get the [public] bus. She helps about 10 children.”[163] The director of inclusive school no. 5 in Armavir said they have 13 staff dedicated to working with 63 children “in the inclusive program.” Among them are three caregivers, who assist children who need support in getting to different classrooms and with eating, among other tasks. However, these support personnel do not stay in the classroom with children.[164]

Under a pilot program on inclusive education and new financing procedures, 84 schools in Tavush region, in northeastern Armenia received additional funds for teachers’ assistants as well as special education teachers. According to Susan Tadevosyan of Bridge of Hope, this has been a key element of the region’s progress on inclusive education.[165]

Lack of Opportunities Beyond Ninth Grade

Many parents interviewed by Human Rights Watch expressed concern about the lack of educational opportunities for older children beyond compulsory education, which ends in ninth grade. Anahit is a 12-year-old girl who studies in an inclusive school in Goris.

Although Anahit’s mother describes her daughter as “very bright and clever,” she sees limited opportunities for her daughter beyond ninth grade. She explained, “School goes to ninth grade and then there is the high school system. I am not sure [Anahit] will be able to go to high school. She will not be able to express herself and understand the difficult topics. Maybe instead she could do sewing, painting, something like that.”[166] Milena, whose 16-year-old daughter studies at a special school said, “After ninth grade, I don’t know what will happen. There are no opportunities in our town for young people with intellectual disabilities. She needs skills for independent living, work training. There are no specialists here giving this training.”[167]

Elena described the dilemma she faces with her son with an intellectual disability, who attended a special school in Kapan from first through ninth grade. “My son is about to finish ninth grade. The main issue for me is what he will do after graduating. I don’t know where to take him. There are no educational colleges in our region providing services to children with disabilities. No college or university will accept him. I feel that my only choice is to move to Yerevan and take him to an institution [that will accept him],” explained Elena.[168]

Varsik’s son Hosep has Asperger’s syndrome and studies at an inclusive school in Yerevan. Although Hosep is achieving at grade level academically and excels in some subjects, such as English language, Varsik told Human Rights Watch that she sees few options for him in the future. “After ninth grade, I don’t know. He’s strong in math, so maybe he could do something with computers? I’m more thinking about [vocational] school, some kind of preparatory course, rather than high school. I’ve heard high school is not effective [for children with disabilities],” said Varsik.[169]

Hakob Abrahamyan of Pyunik said, “Parents are desperate for opportunities for their children as they get older. They don’t know what to do with children after grade nine. Maybe about 10-15 percent go through twelfth grade. Most often it’s children with physical disabilities who go beyond basic education.”[170]

Sofia Harsopyan, a psychologist at a Yerevan inclusive school confirmed, “One of the gaps in the educational system is that we don’t know what a child with a disability will get at the end of ninth grade. Several years ago, there was a procedure that children would get some certificate but without having to pass exams. The certificate could only be used for vocational colleges. There was no opportunity for higher education. At vocational colleges, children who are graduating face integration issues; there is no inclusive education at that level.”[171]

Kristina’s son, Sahag, 18, has an intellectual disability and a speech disability. After studying at a special school through ninth grade, Sahag is in his third year at the second special vocational institution in Yerevan, where he lives and studies gardening. “I would like him to have a normal life…. Our plans are if he gets a good profession, he can support himself and maybe help support us in our old age,” said Kristina. The vocational institution is free, and offers other subjects, including carpentry, carpet making, hairdressing, and auto mechanics.[172]  

Education and Futures

Children with disabilities described their hopes and dreams of meaningful professional lives and make contributions to society. Rita, who is 16, has a mild intellectual disability, and is in eighth grade at the special school where she has always studied, told Human Rights Watch, “I want to go to university. I would like to become a doctor, so that I can take care of people. My neighbor is a doctor.”[173]

Nina, who is 16 and has cerebral palsy, and completed compulsory education through home education, explained, “I want to learn sign languages and work and support those who need support. I would support people who are not speaking. Even at news companies.”[174] Her mother expressed a desire for Nina to pursue other activities, but lacked information about the opportunities. She told Human Rights Watch, “She has nothing to do. It’s becoming a problem, since she wants to be busy. I haven’t thought about continuing her education. But, I see she wants to become a journalist, to meet and communicate with a lot of people. I am ready to support her in what she wants to do and what she’s able to do.”[175]

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. Some parents of children with disabilities expressed discriminatory attitudes towards children with other types of disabilities, particularly those with intellectual or psychosocial disabilities.

At the same time, teachers at some schools confirmed that inclusive education has helped to break stereotypes for children, parents, and teachers. According to one teacher, “We could be surprised seeing children with disabilities. It was something we didn’t understand. But now stereotypes are being broken. Children don’t even pay attention to another child’s disability. No one is afraid.”[176]

Under the CRPD, governments have an obligation to “combat stereotypes, prejudices and harmful practices relating to persons with disabilities ... in all areas of life; and to promote awareness of the capabilities and contributions of persons with disabilities,” including “fostering at all levels of the education system, including in all children from an early age, an attitude of respect for the rights of persons with disabilities.[177]

Margarita, whose two children have difficulties hearing and speaking, described the stigma and bullying her daughter, Nelli, experienced when she was in kindergarten in one remote region of Armenia. “The teachers were kind and paid attention to her, but the atmosphere was difficult. The other children would laugh at her and mock her whenever she was trying to speak. And the way some parents looked at her, as if she was something completely strange,” said Margarita.[178]

According to Tigranui, whose son with Down syndrome, now 23, studied at a mainstream school, she and her son faced hostility from many in the school community during the early years of his education. Eventually, with her commitment to keep him at the school and the efforts of the school to include her son, the atmosphere improved. Tigranui explained, “There were problems with parents and with children. Socializing at first was difficult. Some of the parents even said to me, “Why did you bring him here?!” After some years, though, that same parent said to me, “You made a very good decision bringing him to this school.”[179]

Fear of discrimination and their child being different from his or her peers are reasons some parents gave to explain their decision to send their children to a special school. For example, one mother interviewed by Human Rights Watch explained that she traveled from a remote village for her 9-year-old son with autism to attend a specialized school in Gyumri, rather than send him to the local inclusive school. She said, “As he is a child with a disability, not speaking or hearing well, I don’t think it would be sensible to take him to the village school. Here my son comes and is with kids like himself. There, he will be different.”[180]

A mother who travels by taxi 20 kilometers each way for her son, Narek, who is 16 and has Down syndrome, to attend the special school in Gyumri explained that she feared that her younger son could be harassed if Narek attended the same school. “My younger son is 14 and goes to the village school. I’m thinking about how others will feel if Narek was at that school. I fear that my younger son could be shunned. I’m just trying to do my best for both of my children.”[181]

Human Rights Watch documented stigma among parents of children with disabilities about children with other types of disabilities. For example, Volodya, who lives in Chambarak in eastern Armenia, told Human Rights Watch that relatives had recommended a special school in Yerevan as a potential school for his son, who has an undiagnosed disability that affects his learning and behavior. Volodya said, “I visited the special school over the summer. I didn’t know there would be children with disabilities there. There were children in wheelchairs. I didn’t want my son to be among those children. But, we decided to try it. My wife lived in Yerevan with him for four months while he attended this school. There were a lot of children with issues there.” Volodya disliked that his son imitated certain behaviors of children with other types of disabilities.[182]

Other parents hid their children at home and tried to prevent others from knowing that they have children with disabilities, leading some parents to place their children in orphanages or to decline to send their children to school or receive home education. The director of an NGO working with children with disabilities, told Human Rights Watch that a family that she knows in a village in Armavir province has not allowed their 14-year-old daughter who has a physical disability to receive any education. “The mother did not even ask for home education for her daughter. The family didn’t want it. They were ashamed because of the girl’s disability.”[183]

Nelli, who is in her early 20s and divorced, told Human Rights Watch that part of her decision to give her 4-year-old son with cerebral palsy to an orphanage was the stigma that it might bring to her family, particularly her brother, who is yet to be married. “The issue for us was not entirely about finances. We have to think about the bigger family. My brother is still young. We are thinking about any potential bride for him. No one will want to see an unhealthy child at [our family’s] home.”[184]

Stepan, 46, was widowed in 2008 and soon thereafter placed his daughter, Marie, now 16, who has cerebral palsy, in Kharberd orphanage. Stepan explained that for him, to bring his daughter home now to live with him and his second wife and their young daughter, he would need not only more stable income, “but a separate space for her to live.” He explained this reasoning based on false information from doctors about the adverse influence a child with a disability might have on other children. “The doctors told me that a child in this situation [with cerebral palsy] can negatively influence the nerves of other children. The neurologist said that we should send her away, and have another child.”[185]

One special school director indicated that one of his objections to the development of inclusive education related to the lack of sufficient staff in inclusive schools to meet the needs of a diverse student population. He said, “How can [these] children go to a mainstream school? I think these children need to be in a specialized school. For a lot of children basic self-care is absent. Children go to the bathroom frequently, there are children who can’t sit still in class, may throw something or hit someone. Here we have a nanny and other helpers who feed kids, help them go to the toilet. This is a huge issue. We need additional teachers in the classroom in mainstream schools.”[186]

The Ministry of Education and Science’s plans to make all schools inclusive envision adding assistant teachers to schools, but not in sufficient numbers. According to Ministry officials, “Each school will have an assistant to the teacher, based on the number of children. There will be one assistant for every school that has at least 10 children. A second assistant is added when there are 100 children.” [187]

VII. Other Forms of Education for Children with Disabilities

Special Schools

Special schools are a legacy of the Soviet Union whereby children with disabilities were enrolled on the basis of their disabilities. As noted above, as of December 2016, there were 20 special schools in Armenia, and many have both children with and without disabilities enrolled. Some children live at the school, some do not. Some of these children are without parental care. For example, the director of Kapan Special School No. 3 told Human Rights Watch in April 2016 that the school population included 20 children with disabilities whose parents had surrendered their parental rights, making the school the children’s guardian.

The government has plans to transform some special schools into centers to support children, families, and schools in educating children in the community. According to experts in Armenia, the government is reluctant to transform all special schools, and the law on education allows parents to select a special school for their child with a disability. While parents should be able to choose the kind of school their children attend, the government should actively seek to diminish segregation to the greatest extent possible by providing reasonable accommodations for children with disabilities in mainstream community schools. “There is a risk that the remaining special schools will attract people to come to them,” said Susanna Tadevosyan of Bridge of Hope. Bridge of Hope supports a range of inclusive education projects and is partnering with UNICEF and the government of Armenia in the inclusive education aspect of the deinstitutionalization program described in detail below.[188]

Some parents interviewed by Human Rights Watch had sought to educate their children at inclusive schools in their communities, but ultimately opted for special schools. As described above, the reasons for this decision included shortcomings in inclusive schools’ delivery of a quality education, including: the lack of reasonable adaptations to accommodate a child’s disability; large class sizes and the lack of an individual approach; and the need for a parent to remain with a child at school. However, the quality of education in special schools is not necessarily better. In many cases, sending a child to a special school means traveling long distances or requires a child to live at the school full time or during the school week. In addition, children are separated from their families and immediate communities.

In special schools visited by Human Rights Watch in April and May 2016, class sizes tended to be smaller. For example, in Yerevan Special School No. 17, class sizes were about 10 children per class; Gyumri Special School No. 3 had from five to 10 children per class, and in Goris Special School No. 1, 13 children per class.[189] This is due at least in part to the government’s efforts to reduce the number of children in specialized schools, orphanages, and other types of residential institutions. The smaller class size can be a draw for parents. For example, Gegine explained that the large class sizes and lack of an individualized approach at the inclusive school in her community prompted her decision to move her son, Arsen, 10, who has difficulties hearing and speaking, to a special school in a district of Yerevan far from their home. She told Human Rights Watch,

Imagine 37 children in one room, and my son with difficulties with speech. The other children are noisy and need attention. The teacher couldn’t spend time with my son individually. Even the inclusive teachers spent time with him only once or twice per week in a group with other children with disabilities.[190]

In order to reconsider sending her son to an inclusive school, Gegine elaborated her expectations: “For me to send him to an inclusive school, I would want to see fewer children in one classroom and good, competent specialists.”[191]  

Similarly, Anna felt that the inclusive school near the family’s home wasn’t providing a quality education due to a lack of staff and individual approach to the education of her 13-year-old son with autism. “They didn’t pay attention to him and weren’t engaging him in activities. … He can’t sit still easily, can’t listen. He needs an individual approach. In the [special school] they teach children to read and write, using the same books. I like the individual approach to children with autism like my son,” she said.[192] Now Anna takes two buses and travels over an hour each way so that her son can attend a special school in Yerevan. She only manages to take him a few days per week because her son becomes exhausted from the long trip.[193]

The fact that some staff at special schools often have certain experience and expertise not yet developed among staff at inclusive schools, can also draw parents to special schools. For example, Ovsana, 34, is guardian to her two nephews who both have low vision, has two school-age daughters, and works full time. She cited help with homework after-school provided by the special school as a central factor in her decision to enroll the boys there. “The teachers are good and work with them [my nephews],” Ovsana described. “I work, so only the teachers work with them [on homework]. I am thankful for this school. One year I sent them to a neighborhood school, but we feel more comfortable here, because I was not able to work with them at home. I would not be able to send them to another school,” Ovsana told Human Rights Watch.[194]

Similarly, Artak has speech difficulties and is in sixth grade at a special school in Vanadzor. His mother Larissa, 49, a widow, explained that the homework help provided by the special school, but absent at the local community school, was important in her decision to enroll him in a special school, where he lives most of the time. “I preferred this school. They help him do his homework. He stays at the school during the week and comes home on the weekends. I have health … issues, so it is hard for me to sit and do his homework with him,” Larissa told Human Rights Watch.[195]

Despite these challenges, some parents recognize the importance of having their children educated in the community, at inclusive schools. For example, Lusine Agajanyan, a mother of two, explained her plans for her son, 6, who has cerebral palsy, to go to an inclusive school near their home in Gyumri. “I am not thinking about taking him to a special school. I don’t consider my child to have ‘special needs.’ Both of my children are equal for me. I want him to go out and to be integrated into society, through the school, I want him to be integrated from a young age. I think it will be essential for his future.”[196]

Home Education

Human Rights Watch interviewed parents whose children with disabilities receive home education, whereby a teacher or teachers visit the child at home and provides basic literacy education in a limited number of subjects, typically Armenian language, Russian language, and mathematics. The state program for home study is one to three classes at home for nine hours per week, through ninth grade. At higher grades the number of hours may increase, depending on the education plan.[197] Parents interviewed by Human Rights Watch consistently reported that their children received fewer than nine hours of instruction per week. The Ministry of Education and Science reported that it does not record data on the number of children receiving home education.[198]

In many cases documented by Human Rights Watch, parents opted for home education for their children with disabilities not for health reasons, but due to barriers in accessing community schools, such as the lack of reasonable accommodations in schools, and lack of physical accessibility in both the schools themselves and in apartment buildings and public transportation.

Children who receive home education are formally enrolled at a community school or special school and are counted among the children attending that school, although the children do not actually receive an education in the school and may rarely, if ever, visit. For example, at Vanadzor Specialized School No. 1, at the time of Human Rights Watch’s visit in April 2016, there were 70 children enrolled, 24 of whom received home education.[199] At Yerevan Special School No. 17, of the 76 children enrolled in the school, 10 children receive home education. [200]

Some schools make efforts to include children receiving home education in special events at the school. While this can help mitigate some feelings of isolation for the child and allow a child to have some community experiences, it is no replacement for a child’s full inclusion in the school, receipt of a quality education, and the opportunity to regularly socialize with others, a key element of social and emotional development.

Children who receive home education acutely feel the lack of interaction with peers and participation in the community. For example, Hakob studied for several years at an inclusive school before his mother opted for home education in the face of the school’s failure to accommodate his disability. He said, “I like going outside, meeting friends and talking about things,” all of which are much more limited to him now.[201]

According to the law on education, those who are unable to attend educational institutions due to health conditions are provided with in-home education, or with education in hospitals if the child is hospitalized for more than 21 days.[202] Experts at the Yerevan Assessment Center, which has been one of two centers in the country assessing children with disabilities and in the future will support and coordinate the work of regional pedagogical-psychological support centers, stated that home education should not be routinely used, but is primarily intended for use on a temporary basis. They also acknowledged, however, that several children enrolled in the assessment center’s school, which is well-resourced and specializes in the education of children with disabilities, receive home education.[203] Human Rights Watch documented numerous cases of children receiving home education on a long-term basis.

Teachers with experience of both home education and inclusive education told Human Rights Watch that inclusive education provides a better educational environment. For example, a teacher in Goris, who had been responsible for organizing home education before the school became inclusive, told Human Rights Watch, “Inclusive education is better. The child is not isolated from his peers. The children communicate with each other, develop friendships.”[204]

Lack of physical accessibility in the community as an impediment to quality education

Nina, 16, has cerebral palsy and lives with her parents and younger brother in Vanadzor. She told Human Rights Watch how she wishes to have more experiences outside of her home, something that became possible only with a well-fitting wheelchair provided by a local NGO in 2016. “Before I had a wheelchair, I could only look out onto the street, but now I am able to go outside. I felt very bad. I was a person closed at home. I wanted to go out, walk, and see the city. I like to breathe fresh air,” she said.[205]

However, her mother explained that Nina has received home education from the age of 6 due to the lack of accessibility both in the local schools as well as in their apartment building. The wheelchair is an improvement, but does not overcome all of the obstacles. Her mother explained, “We live on the fifth floor of our apartment building. There is no elevator. It is not convenient to take her out. … When she was smaller, I could carry her to go outside, but year by year, she’s getting bigger, so it’s difficult for us. It is difficult to carry her up five flights. And at the school, there are no ramps, only stairs.”[206]

Anush Aslanyan, 24, is the president of a Vanadzor-based organization of people with disability. She has a disability that affects her walking and some other motor skills. She graduated from Vanadzor State University with a degree in biology in 2015. She described her experience with temporary home education, her only option due to lack of accessible transport in the winter:

I would have home education for three months in the winter. I lived in a village with heavy snowfall and it was icy. … I didn’t communicate or spend time with my peers. It was bad for me because I am a very social person. There were several subjects not included in home education. I passed home education in the elementary grades and after that I worked very hard to go the 1.5 kilometers to get to school. Sometimes I would go by horse with my father. When I was older, my mother would walk with me and hold my hand.[207]

The director of Yerevan Special School No. 17 described a child who was moved from the special school to a mainstream school, an apparently positive step towards better inclusion of the child in the community. However, the staff at the community school and the child’s parents decided that she would receive home education. “The child was here [at the special school] from ages 7 to 13. She used a wheelchair. She was getting heavier, and already 82 kilograms, which caused physical difficulties for the parents to carry her out of the house,” in the absence of an elevator in the apartment building.[208]

A teacher at one special school visited by Human Rights Watch reported similar difficulties for parents of several children enrolled in the school who have physical disabilities and receive home education. The teacher explained, “There are no lifts and no ramps here. There was a plan to install a wheelchair stair lift, this year, but it didn’t happen. I don’t know why.” [209] Regarding one child who has cerebral palsy, the teacher said, “His parents decided that he won’t come here [to the school]. It’s very difficult for the parents to move him from the house. They physically cannot bring him here.”[210]

Narine Manukyan, director of a Yerevan-based NGO that provides services to children with disabilities, described one boy, 11, with cerebral palsy, who receives education at home. His parents have difficulty getting him to school daily because they live in an apartment on the fifth floor of a building, and there are no elevators or ramps. [211]

Inadequate education and lack of additional services

Armine sought to enroll her daughter, Karine, who has autism, in a local special school, in 2008. After a short evaluation, the teachers suggested home education for Karine, which has meant limited education for Karine for the past eight years and being deprived of access to the speech therapy provided at the school at no cost. In addition, Karine has been deprived of social interaction with her peers. Her mother told Human Rights Watch:

I took Karine to the special school when she was 10. She spent about 40 minutes there. I was with her the entire time. She was moving around a lot and couldn’t sit still. After this visit, a teacher called and said the school recommended home-based education for Karine. I don’t know who took that decision.

Now, two teachers in different subjects come twice a week and spend 30 minutes here each time. Karine is studying at an eighth grade level. I would like her to have more hours. Karine doesn’t speak, but she only saw the speech therapist during our short visit at the school. To be honest, I am not satisfied with the home education. I wanted her to go to school and to receive speech therapy.[212]

Armine cannot afford private speech therapy. She explained, “I receive a [monthly] disability pension for Karine of about 21,000 dram ($44) but I spend it all on diapers that she wears at night.”[213]

Hakob, has cerebral palsy, and his mother, Anush, had accompanied him daily to a local inclusive school in Gyumri for several years. When she opted for home education, due to the lack of accessibility in the school and her difficulty carrying him, school officials refused to send teachers to their home. As a result, Hakob lost two years of education. Anush eventually enrolled Hakob in another school, and one teacher from that school comes to their home three days a week for one hour or one-and-a-half hour lessons in Armenian language and mathematics only. [214]

Hasmik, 30, who lives in Gyumri with her three children, opted for home education for her 8-year-old daughter Diana, who has cerebral palsy and uses a wheelchair. Two teachers each come for one hour lessons, twice a week, and teach only three subjects: Armenian language, mathematics, and Russian language. Even this limited curriculum isn’t always implemented. “The Russian teacher doesn’t come a lot, not regularly. She can’t manage to schedule it somehow,” said Hasmik.[215] Hasmik takes Diana to the school once a week to receive speech therapy, and must carry her and take a taxi to and from the school, in the absence of accessible transport. [216]

Attempts to mitigate the isolation of home education

School directors reported efforts to try to include students receiving home education in special events or activities at the school. Margarita Badasyan, director of Armavir Inclusive School No. 5, told Human Rights Watch that two children with autism enrolled in the school receive home education. “We try to bring them out of the home and include them in the school. One mother will bring her child to spend some time in the school when there aren’t exams, so the child’s noises don’t disrupt the others. Specialists will work individually with the child, and then he goes back home. We think it’s important that the child feels close to society.”[217]

According to the director of Yerevan Special School No. 17, some of the children enrolled in home education participate in some school events. In this particular school, which includes an interior wheelchair ramp and is more physically accessible than other schools, the director noted, “The institution is accessible, but parents may not always be able to bring the child to school.” [218]

Narine Manukyan, director of Armenian Mothers in Yerevan, said that one of her organization’s beneficiaries receives home education, but that the school and the boy’s parents make efforts to have him included in the school community. “Once or twice a month the boy goes to the neighborhood school for events, and sometimes children from the school visit him at home,” she said.[219]

Gohar, whose two children study a few hours a week in an inclusive school in Gyumri, said that the family had initially opted for home education, but the school encouraged her to send the children to the school. “The special school... provided home school for the first months [of the children’s enrollment], but the teacher suggested that it is better for the children to come to the school. She said the atmosphere is different and there will be more opportunities,” explained Gohar.[220]

Complete Lack of Education

Human Rights Watch interviewed some families whose children with disabilities did not attend any school or enrolled in school very late, due to lack of accessible schools, housing, and transportation, because of stigma, or for other reasons. International organizations estimate that 20 to 30 percent of children with disabilities neither attend school nor receive home education.[221] These rates were higher in rural areas. The lack of conclusive data makes it difficult to assess the scale of the problem and is a serious obstacle to making effective policy to ensure no child is left out of education.

Alla is a 14-year-old girl with cerebral palsy who had no education until she was 13. Alla lives with her family in a village near Yerevan. Despite her mother’s sustained efforts for many years to secure her education, Alla was just completing her first year of home education, with two teachers coming once a week for two hours, when Human Rights Watch met the family in May 2016. Her mother, Nelli, explained:

My daughter is the only one with a disability in our village. Alla can’t walk and there is the issue of the [local] school’s facilities. There are no ramps. The classroom is on the second floor. There are no experts at the local school. … I heard that there were good specialists at the special school […] so I registered her there.

But it is far, and I would need to take a taxi to get her there. Our financial state does not allow me to do that. … It costs 3,000 dram ($6.20) per day to take her there and back. … I have 700,000 dram ($1,470) in debt. I would like her to be educated, I would like her to be more active, to communicate, not sit alone, to speak more. If there would be funding for transportation, of course I would be very glad for her to go to school.[222]

Gayane Azoyan is the deputy director of the school in Hatsik, a town in the Armavir region and director of an NGO that provides services to children with disabilities and their families. She told Human Rights Watch she knows several children with physical disabilities living in the Armavir region who are out of school due to a lack of accessible transportation in the community. Some receive no education at all, including one girl, age 15, who has a physical disability. “We helped the family by providing a wheelchair and a computer. The wheelchair is useful at home. The village conditions, roads and facilities are not accessible for a wheelchair. She doesn’t attend school. Her sisters are students and try to teach her something. Our school hopes to get a car with a lift to help these children get to school. It is our mission to help them get to school.”[223]  

A woman in Armavir province with two daughters with cerebral palsy also told Human Rights Watch that her two daughters, now 26 and 18, had never been to school. Susi, 50, explained that this was because, “Their hands are not working. The oldest only feels comfortable for a long time propped up on her belly; the other needs to be in a supported chair, so they can’t be at school. I didn’t apply for home education because their brains are also affected by their disability.”[224] However, thanks to a local NGO, the girls now have an electronic tablet, on which they play games. During Human Rights Watch’s visit to the family, a researcher saw how the 18-year-old used the tablet, a device that could easily be incorporated into an educational program to facilitate learning. Both young women were engaged, alert, and smiling during the researcher’s visit. Susi resisted home education because she sought to hide her daughters from others, fearing that the family would be stigmatized by some in their community.[225]

Education for Children Living in Orphanages

Children with disabilities living in state orphanages go to special schools, receive limited education inside the orphanage, or in some cases receive no education at all. Very few attend mainstream inclusive schools. Those who do attend schools outside the orphanage often do so for a shortened day. In contrast, children without disabilities living in orphanages attend community schools.

According to the director of Kharberd orphanage, of the 97 children in the orphanage, 10 attend an inclusive school in Kharberd, and 30 attend a special school in Yerevan. Among the young adults in the institution, two go to a vocational college in Yerevan where they study shoemaking, and 19 others go to a college specialized for people with intellectual disabilities that provides training in hairdressing, landscape design, and carpet making. The orphanage provides transportation.[226]

According to senior staff at the Marie Izmirlyan orphanage in Yerevan, in May 2016, 52 of the 110 orphanage’s children attended schools. Only four children went to an inclusive school, and 48 went to special schools. All of the children who attended school went for a shortened day. One girl interviewed at the orphanage who attended fifth grade at a special school confirmed that she goes to school every day, but for just a few hours a day.[227] Fifteen to twenty children received home education at the orphanage, with teachers from special schools coming to the orphanage to teach.[228]

Among children in the Gyumri and Nork orphanages for children up to 6 years, no children attend mainstream preschools, but they do receive some preschool education in the institution. According to the director of the Gyumri Children’s Home, “We provide the preschool service here. We have specialists in the orphanage. Children are not going out for preschool. Our children have special needs. At a regular preschool, they could not take such children.”[229]

Hayk, 16, who has autism, has lived in an orphanage for three years. Although while he was living at home Hayk went to a special school for six years, he has not attended school since entering the orphanage. According to Hayk’s mother, “He doesn’t go to school now. He’s not speaking and they [the orphanage staff] said that it won’t make any sense for him to go to school. He gets to do some handicrafts here.”[230]  

Taguhi, who is almost 11 and in fifth grade, told Human Rights Watch that she used to go to an inclusive school near the orphanage where she lives, but that she now receives education in the institution for three hours per day. Neither she nor a caregiver who works closely with her in the institution knew why she no longer attended the inclusive school.[231]

National Laws Regarding Access to Education

The Armenian constitution guarantees all persons the right to education and prohibits discrimination.[232] The law on education envisions inclusive education as the mechanism to guarantee the right of all children to education. Inclusive education is based on “maximum participation in the learning process through provision of necessary conditions and an adapted environment for every child, including those with specific educational needs.”[233] The law provides for individual education plans and teachers’ assistants.[234] The law also provides for specialized schools.[235]

The law also specifies accommodations to facilitate education for children with disabilities: “a combination of substantive programs and teaching methods, individual technical means for education, adapted environment, and pedagogical, social, and other services, aimed at mastery of the basic general education program.”[236] Additionally, the law states the government will provide financial support for education for children with moderate to severe speech, hearing, visual, intellectual, and/or other disabilities.[237] The law on the rights of the child guarantees children with disabilities free medical and psychological services, as well as the opportunity to receive basic and professional education, employment, social rehabilitation, and a “full” life, by strengthening their self-esteem and facilitating participation in the community.[238]

International Standards

Nondiscrimination and Equal Access

International law as set out in the Convention on the Rights of People with Disabilities (CRPD) prohibits discrimination on the basis of disability.[239] The right to nondiscrimination in education for people with disabilities includes the right not to be segregated and to be provided with reasonable accommodation (see below for details on reasonable accommodation) to ensure access to education on an equal basis with others in the communities in which they live.[240] To end discrimination and ensure equal access, states should remove legal, physical, communication, language, social, financial, and attitudinal barriers within the educational institutions and the community.[241] The obligation of nondiscrimination applies to both public and private actors, and at all levels of education, including higher education and vocational training.[242] This anti-discrimination measure should be met through reasonable accommodation. [243]

The Committee on the Rights of People with Disabilities has also stated that realization of the right to education requires that the entire education system be accessible, including: buildings, information and communication, curriculum, education materials, teaching methods, assessment and language and support services, transportation, water, hygiene and toilet facilities, school cafeterias, and recreational spaces. The Committee calls on states to establish a clear time frame for all existing education environments to be rendered accessible and to “prohibit and sanction the building of any future education infrastructures that are inaccessible.”[244]

Quality of Education

Beyond their accessibility obligations, governments need to ensure that the form and substance of education, including curricula and teaching methods, are of “good quality” and meet minimum education standards. The aim is to ensure that “no child leaves school without being equipped to face the challenges that he or she can expect to be confronted with in life.” [245] According to the UN Committee on the Rights of the Child, an education of good quality “requires a focus on the quality of the learning environment, of teaching and learning processes and materials, and of learning outputs.”[246] The system should establish high expectations for all learners, without discrimination.[247]

Whether States have fulfilled their obligations for the right to education is dependent not just upon how many years of schooling children have attended, but also upon whether what they learn can empower them in their lives and help build their unique personality, talents and abilities.[248]

Under the UNESCO Convention against Discrimination in Education, states should “ensure that the standards of education are equivalent in all public educational institutions of the same level, and that the conditions relating to the quality of the education provided are also equivalent.”[249]

Inclusive Education

The CRPD calls inclusive education “a fundamental human right of all learners.”[250] The CRPD calls on states to ensure the right of persons with disabilities to education through inclusive education at all levels, including preschools, primary, secondary, and tertiary education, vocational training and lifelong learning, extracurricular and social activities without discrimination and on equal terms with others. An inclusive education system should focus on “the full and effective participation, accessibility, attendance and achievement of all students,” especially those who are excluded or at risk of being marginalized.[251]

In its General Comment No.4 on the right to education, the Committee on the Rights of People with Disabilities specifies that integration, whereby children with disabilities are placed in mainstream schools without changes to curriculum, teaching, and learning strategies, does not constitute inclusion. The Committee has detailed the core features of inclusive education, including, inter alia, ending segregation within education settings by ensuring inclusive classroom teaching in accessible learning environments with appropriate supports.

The Committee on the Rights of People with Disabilities also notes that any support measures provided to children with disabilities should be “compliant with the goal of inclusion. They should be designed to strengthen opportunities for students with disabilities to participate in the classroom… rather than marginalize them.”[252] The committee has stated that schools should provide “adequate continuous personalized support” directly to students with disabilities. One element of this can be a qualified learning support assistant, either shared or on a one-to-one basis, depending on the requirements of the student.[253]

The education system should provide a personalized educational response, rather than expecting the student to fit the system, and “flexible curricula, teaching and learning methods, which requires support and reasonable accommodation so that learners are able to fulfill their potential. Learners should also receive the support necessary to ensure their effective transition to vocational and higher education and finally to work.”[254] Inclusive education is not only relevant for the education of students with disabilities, but should benefit all children and be “central to the achievement of high-quality education for all learners and the development of more inclusive societies.”[255]

The Committee on the Rights of People with Disabilities has also stated that “inclusive education is incompatible with institutionalization,” and that “pending the process of de-institutionalization, persons in institutional care settings should be given access to inclusive education with immediate effect.”[256]

The affirmation of the right to inclusive education is part of an international shift from a “medical model” of viewing disability to a “social model.” Until recently, disability was considered a defect that needed to be fixed. Disability today is viewed as an interaction between individuals and their environment, and the emphasis is on identifying and removing barriers in the environment and discriminatory attitudes.[257]

While the CRPD advocates for the fulfillment of “the goal of full inclusion,” it also states that the primary consideration should be the “best interests of the child.”[258] In some circumstances, such as when an inclusive education system is not yet functional or necessary accommodations cannot be reasonably provided, it may be in the best interests of the child to be educated in special education settings for part or all of the time. The CRPD emphasizes the voice and choice of children with disabilities.[259] It is important that the government make efforts to ensure mainstream education is inclusive and accessible for children with disabilities, and make special education available so that children with disabilities have meaningful choices.

Reasonable Accommodation

To realize the right to inclusive education, the CRPD requires states to ensure “reasonable accommodation,” defined as the “necessary and appropriate modification and adjustments” that would ensure people with disabilities the enjoyment of all human rights and freedoms on an equal basis with others.[260] The denial of reasonable accommodations on the basis of peoples’ disabilities constitutes discrimination.[261]

A government’s duty to provide reasonable accommodation is enforceable from the moment an individual needs it in a given situation.[262] Any support measures provided should be compliant with the goal of inclusion and should “strengthen opportunities for students with disabilities to participate in the classroom and in out-of-school activities alongside their peers, rather than marginalize them.”[263] Individual approaches should aim to enable “each student to live, study, and act autonomously, with adequate support, taking into account individual capacities.”[264]

“Reasonableness” involves an analysis of the relevance and the effectiveness of the accommodation, and the expected goal of countering discrimination. While the Committee on the Rights of People with Disabilities acknowledges that availability of resources and financial implications should be considered when assessing whether provision of a certain accommodation poses a disproportionate burden, using the lack of resources and financial crises as justification for failure to make progress towards inclusive education violates the right to education. Availability of accommodations should be considered with respect to a larger pool of educational resources available in the education system, and not limited to resources available at the academic institution in question; transfer of resources within the system should be possible.[265]

The CRPD requires that states ensure education “in the most appropriate languages and modes and means of communication for the individual”[266] and promote the availability and use of assistive devices.[267] The Committee on the Rights of Persons with Disabilities has noted that there is no “one size fits all” formula to reasonable accommodation, and different students with the same disability may require different accommodations.

Accommodations may include changing the location of a class, providing different forms of communication and learning materials in alternative/accessible formats, providing students with a note-taker, or a language interpreter or allowing students to use assistive technology in learning and assessment. Provision of non-material accommodations, such as allowing a student more time, reducing levels of background noise, sensitivity to sensory overload, alternative evaluation methods or replacing an element of curriculum by an alternative element, should also be considered. Support can also consist of a qualified learning support assistant, either shared or on a one-to-one basis, depending on the requirements of the student.[268]

An important part of ensuring reasonable accommodation is training teachers, school administrators, and education officials in nondiscrimination and methods to support persons with disabilities.[269]

VIII. Government and Donors’ Response

Deinstitutionalization

With the financial support of the United States Agency for International Development (USAID), UNICEF is supporting the Armenian government in a program which aims for a 50 percent decrease of children in institutions across the country. A memorandum of understanding with the government calls for 22 residential institutions, including orphanages, special schools, and night boarding institutions, under different ministries to be transformed to provide community-based services.

The program includes: 1) legal reform to revise the systems for foster care and adoption and for social workers and case managers; 2) prevention of placement of children in institutions; 3) transformation of institutions into centers to provide social support, after care services, and day care; 4) increasing the number of foster care families; 5) support to biological families to help them care for their children; 6) inclusive education; 7) transforming special schools into regional pedagogical-psychological support centers, which will support children and families and guide and support individual schools in providing inclusive education.[270] The UNICEF project envisions 10 of these centers, plus five to eight community social support centers, which will provide after-school care and other community services.[271] According to the Ministry of Education and Science, 15 special schools will be transformed by 2022, although five will not be transformed, but remain special schools.[272] Those that will remain open include a special school for children with visual disabilities and one with hearing disabilities. As noted above, the three generalized orphanages should be transformed, but not the specialized orphanages. The system should also include professional social workers working locally in communities who would assess the assets, challenges, and needs of each family, and make decisions regarding needed supports, including cash and in kind services; the support is to be as personalized as possible.

The program also includes a revision of the mandate of the Trustee and Guardianship Committees, the local level bodies responsible for making recommendations for children’s placement in institutions or alternative care. Currently, these committees are entirely staffed by members of the community who work on a voluntary basis without specialized training. Under the envisioned referral system for children in difficult life situations, Trustee and Guardianship Committees will be required to look at all options for the placement of children, in order of priority: biological family, relative to act as a guardian, adoptions, foster family, small group home, residential institutions.[273] Currently, mechanisms for foster care and adoption are under-developed, leaving referral to residential institutions 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.

In 2016, the government began the process of transforming two special schools in Syunik region, one in Goris and one in Sisian, into pedagogical and psychological support centers, moving a total of 77 children back to families in mid-2016.[274] As a next step, the government plans to transform two special schools, a night boarding institution, as well as an evaluation center for children with disabilities in the Lori region in 2017 and the orphanage there in 2018. In late 2016, the government also announced that it intends to transform the six remaining night boarding institutions in the country in 2017, although has not specified the mechanisms to ensure successful family reunification or alternatives to institutional care in a short period and without alternative care systems fully developed.[275]

In addition, there have been a number of programs in different parts of Armenia in past years to move children out of residential institutions and into families.[276] According to Aida Muradyan of World Vision Armenia, approximately 200 children were moved out of residential institutions between 2008 and 2013, although some returned or were placed in other institutions, as noted above. In 2015, Save the Children supported 47 cases of reunification of children, ages 7 to 15, with their families, from six different regions.[277] In Gyumri and Vanadzor, the organization Aravot provides direct support to families to help children return to their families or to prevent children from being placed in institutions. Aravot helps support children to return to their families, including 52 families in 2016, and provides one year of material support to families to assist in the transition.[278]

The government’s 2017-2021 Strategic Plan for the Protection of the Rights of the Child includes social protection and education as priorities and aims to address some of the concerns and recommendations raised in this report, including that the government should: ensure each child's care and upbringing is organized in the family; expand and develop alternative services for children in difficult circumstances; and ensure the inclusion of children, including children with disabilities, in society, through quality inclusive education. One expected outcome is that “[a]t least 70 percent of children in institutions will be transferred to families.” According to the strategy’s timeline, “[a]n implementation plan/schedule of measures aimed at supporting children who have returned from institutions to families” will be adopted in 2017.[279] This is an important step, but something that the government could have prioritized in conjunction with the deinstitutionalization already underway in 2016 and 2017 in the Syunik and Lori regions. Experts in childrens rights in Armenia reported that the government did not allow for transparent, open public review and commentary on the strategy, but presented it to a handful of groups and experts with a short period for review.[280]

The Financial Equation

As documented by Human Rights Watch, UNICEF, and others, the main challenges facing families in Armenia and driving decisions to place children in institutions include income, housing, and unemployment, as well as disability. 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.[281]

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.”[282]

As described above, depending on their level of social need, individuals and families can receive monetary and other benefits. According to the law on state benefits, children with official disability status receive a monthly allowance of 18,000 dram ($37), regardless of need. In focus group interviews with parents of children with disabilities conducted by three disability rights NGOs in October 2016, parents stated that, given a choice, they would prefer to receive relevant services instead of the allowance, since the small sum fails to cover the essential requirements or needs of the child.[283]

Community-based Services

Save the Children has also reported that the most acute issues in child protection in Armenia include the “absence of any kind of social services for vulnerable children in the majority of communities,” and the absence of “differentiated types of family support based on identified needs.”[284] Many NGOs across the country work to support small groups of beneficiaries, and the government has taken some steps to implement community-based services, but these initiatives are not sufficient to reach all families in need, particularly in the context of deinstitutionalization when children are moved out of institutions and returned to families who may still be facing many of the same challenges that prompted their child’s initial placement in the institution.

There are dozens of nongovernmental organizations across Armenia which support children with disabilities and their families and organizations which provide other services to families and in many cases serve an essential role in supporting families to prevent institutionalization of children. Save the Children has highlighted that these organizations are largely dependent on international funding and that they can face interruptions in funding and thus their ability to deliver services continuously and effectively to their beneficiaries. Recent legal amendments to the law on public organizations, which make it possible for nongovernmental service providers to provide services for fees, could improve the efficacy and continuity of NGO service provision.[285]

In recent years, there have been some positive steps among government agencies to develop and expand support services in the community, although these are not yet sufficient to meet the needs of families who could benefit from them, in particular families of children with disabilities. For example, the Ministry of Labor and Social Affairs has established a Center for Children in Gyumri. According to the center’s director, Marine Ghalachyan, “Our main goal is to prevent children from being sent to orphanages and residential schools.” The center’s social workers each work for up to two to three years with 15 families with children who are in difficult life circumstances, including those facing poverty, health issues, and in need of psychological support. The center identifies families and cooperates with state and nongovernmental organizations to secure services including employment placement, food, clothes, vocational training, and job skills. The center also provides after-school care for 100 children, and supports transportation for 50 of them.[286]

Alternative care, including kinship placement, 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. According to Save the Children, which has been actively involved in the development of a more robust alternative care service system in Armenia, there are a number of obstacles to the placement of children in alternative care. 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 addition, 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.[287] One orphanage director confirmed this to Human Rights Watch, “In our orphanages there aren’t many children available for fostering because their parents have not surrendered their parental rights.”[288]  Amendments to the family code currently under review by several government ministries would eliminate the requirement for parents to have relinquished their parental rights in order for children to be eligible for foster care placement.[289]

Adoption is also limited, also in part due to the fact that most children in orphanages have at least one living parent, and those parents do not relinquish their parental rights. According to World Vision, “We have a list of 260 families wanting to adopt children.”[290] The director of the Marie Izmirlyan orphanage said that in 2016, one family in Armenia had adopted a child from the orphanage. The child is a wheelchair-user who does not have any other disabilities. Two children were adopted from the orphanage in 2015.[291]

Experts and officials repeatedly acknowledged that little attention is given to identifying alternatives to institutions for children with disabilities. One Child Protection Unit official told Human Rights Watch, “It is more difficult to find foster families for children with disabilities. Parents who foster specify the criteria they want in the child they will foster, such as their age and sex. They rarely request children with disabilities.”[292] The director of the Nork orphanage for children under 6, explained: “The number of children adopted depends on the kind of children we have in the orphanage. The more healthy children [children without disabilities] we have, the more adoption. We have only two cases when unhealthy children were adopted.” Both adoptions were international.[293] “We haven’t had any foster care families because children have very specific needs.[294]” According to the doctor at the Kharberd orphanage, “I don’t think that we can find families who would care for children with disabilities. Taking into consideration the health situation of children, I’m not sure if someone would be able to take care of such children.[295]

At the same time, officials, including orphanage directors, acknowledge that alternative care should be prioritized over placement in institutions, including at the moment when a child is in need of alternative care. The director of the Nork orphanage, Liana Karapetyan said, “I would like to see children go to foster family right away, rather than going to institution first and then to foster family. This is traumatic for family.”[296]

Inclusive Education

The government has formally committed to creating a fully inclusive educational system, whereby all general education schools in the country will be inclusive by 2022. An overhaul of the educational legal framework in 2014 established the basis for inclusive education for all children with disabilities.[297] The government has also developed a draft 10-year national education strategy for 2016-2025, which as of this writing was presented for public discussion, and has not yet been sent to parliament.[298]

As of December 2016, of 1,384 schools in Armenia, 284 are considered “inclusive.”[299] Fifteen special schools are to be transformed into community-based services, while five shall remain open, including schools registered as specialized for sensory disabilities. According to Lilit Asryan, director of the Yerevan Assessment Center, “Every child has the right to inclusive education, but children and parents will also have the option of special schools.”[300]

Inclusive schools typically hire a team of specialists, including a special education teacher, a psychologist, and a speech therapist or a social worker. The staffing level and composition of the team will depend on the number of children in the school. For example, for 15 children, there should be a psychologist, social worker, and speech therapist. While specialist support is important, as this report documents and as other experts have identified, the use of specialists can perpetuate segregation, with children pulled out of classrooms to study with specialists, in some cases based on a belief that only a “specialist” can work with children with disabilities, not a regular teacher.[301]

Teachers’ assistants are being introduced to every inclusive school, at a ratio of one per 100 children.[302] 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.[303] The government should ensure provision of aides or paraprofessionals as needed to facilitate the education of children inside the classroom, rather than on a fixed ratio.

Teacher training is a component of the transformation to inclusive education. Bridge of Hope and the National Institute of Education have collaborated to train teachers in inclusive education in Syunik as well as other regions in Armenia.[304] As noted above, Syunik is the first pilot region for deinstitutionalization under the UNICEF program. The State Pedagogical University instituted required courses in inclusive education, although the first teachers completing the coursework have yet to graduate.[305]

The pedagogical-psychological support centers created by the transformation of special schools (as described above), will evaluate children’s educational needs and are expected to work closely with parents, teachers, and the child to support them. The center’s staff will visit schools, conduct assessments of children and prepare individual development plans for each child, and later follow up on the plans’ implementation. [306] The goal is to move away from relying exclusively on medical diagnoses, by using a more comprehensive evaluation, based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF).[307] According to Tadevosyan of Bridge of Hope, “Assessment of educational needs will be done at the pedagogical-psychological centers. Disability will not be the key for educational support.”[308] Parents may also visit the center to request services, if they believe their child is in need of supports, such as psychological support, speech therapy, etc.[309]

Recommendations

To the Government of Armenia, in particular the Ministry of Labor and Social Affairs

Ensure rights protection during deinstitutionalization and the transition to family-based care

  • Deter new placements of children in residential institutions;
  • Ensure children are not separated from birth families on grounds of poverty, other material deprivations or disability;
  • Establish a time-bound plan to end the use of residential institutions for all children. Children should only be placed in residential institutions in emergency cases or to prevent the separation of siblings, and for a limited duration, and with planned family reunification or placement in other appropriate long-term alternative care as the ultimate outcome for the child;
  • Eliminate discrimination in the deinstitutionalization process, including by guaranteeing that national deinstitutionalization policy includes children with disabilities, and does not discriminate against children on the basis of disability, on the type of disability or high support needs;
  • Ensure that financial and other resources allocated to institutions are decentralized and redirected to the establishment of community-based services;
  • Support and strengthen birth families of all children currently in institutions with the aim of reuniting the child with her or his birth family. When identifying and working with families, include families of children with disabilities on an equal basis;
  • Develop individual plans for each child’s exit from residential institutions, including a plan for community-based support and services. Individual plans should be timely and acted upon in a reasonable timeframe, lest they become obsolete, as family circumstances may change. Ensure long-term case worker involvement and regular monitoring of implementation of individual plans;
  • Ensure that foster care and adoption systems are fully functional by the time children are moved out of institutions, and not after the transformation of institutions;
  • Potential caregivers should be carefully screened, trained, and monitored to ensure that placement is in the best interest of each child;
  • Ensure focused material, financial, psychological, and other supports to all families (birth, foster, adoptive) following the placement of a child in the family to ensure an effective transition and to limit the risk of children being returned to institutions;
  • Establish and maintain a range of targeted, accessible, diversified community-based services for families in difficult situations, as well as for individuals with disabilities, including children with disabilities and their families, to prevent institutionalization and to support families to raise their children at home;
  • Increase financial and technical support for the system of social workers, ensuring sufficient numbers of social workers;
  • Develop and sufficiently support family outreach programs to prevent separation of a child from his or her birth family;
  • Until targeted, inclusive, community services are developed, in the short-term, identify and create opportunities to make resources that are concentrated in institutions, such as rehabilitation services, medical services, therapies, medical and other specialists, and other services available to children living in nearby communities and their families, so that they may also benefit from such services while raising their children at home. 
  • Develop support systems during the period when children approach 18, age out of institutions, and leave institutions. Supports should be established for children without and with disabilities, with a view to providing differentiated support based on an individual’s requirements;
  • Ensure the regular consultation of children, adults with disabilities, families of people with disabilities, organizations of people with disabilities, NGOs and the ombudsperson in the formation and implementation of the deinstitutionalization plan and all aspects of the development of community-based services;
  • Establish effective coordination between relevant government agencies, including the Ministries of Labor and Social Affairs, of Education, of Territorial Affairs and Administration, of Finance, the Yerevan Municipality, and regional governments in the deinstitutionalization process, including in the reallocation of resources from institutions in favor of community supports;
  • Collect appropriate disaggregated data to formulate policies, plans, and programs including data on the number of children with disabilities, disaggregated by disability-type and other demographic markers. Ensure mechanisms for data sharing and exchange between different agencies;
  • Ensure that the draft law on the protection of the rights of persons with disabilities and their social inclusion is fully compliant with the CRPD. Once the draft law is compliant, continue supporting its passage in parliament.

Protect the rights of children who remain in institutions pending full deinstitutionalization

  • Reduce the number of children in groups in residential institutions and ensure a smaller ratio of caregivers to children to help guarantee children receive individualized attention and nurturing;
  • Examine ways to guarantee privacy for children, especially older children;
  • Ensure all children in institutions participate in inclusive education in mainstream community schools, in line with the Committee of the Rights of Persons with Disabilities General Comment no. 4 (2016);
  • Create and implement programs to prepare children, including those with disabilities, to leave institutions;
  • Ensure that every child approaching adulthood is provided with accessible information about their rights;
  • End formal or informal policies or practices of denying children with disabilities in institutions legal capacity upon reaching adulthood;
  • Replace legal provisions that permit persons with intellectual and/or psychosocial disabilities to be denied full legal capacity and placed under full guardianship, with a system of assisted decision-making.

To the Ministry of Education and Science, the Ministry of Territorial Affairs Administration, and the Yerevan Municipality

End Discrimination and Maximize Quality and Inclusion in Education

  • Ensure that children with disabilities receive access to a quality education on an equal basis with others;
  • Implement inclusive education at all levels to achieve maximum inclusion of children with disabilities, including children with high support needs, in mainstream schools.

Guarantee an individual approach to education of all children

  • Ensure reasonable accommodation, differentiated according to the individual requirements of each person. Look for ways to improve access to assistive devices and technology within education; often there are low-cost options. Ensure adequate budget allocations and funding for schools to guarantee reasonable accommodations;
  • Minimize the removal of children with disabilities from classrooms for separate coursework. While some children may require certain individual or small group coursework to augment their educational experience, these classes should not be a replacement for children’s full participation in the classroom;
  • Ensure an adequate number of teachers and other professionals, including aides for students. Revise the current approved ratio of one aide per 100 students to allow for more flexible employment of aides as necessary for inclusive education, including as a component of reasonable accommodation;
  • Establish curricula and assessment tools that are flexible and adaptable to the needs of children; support teachers and administrators in moving away from a one-size-fits-all approach to learning and to adapt to different learning abilities and styles;
  • Establish curricula to guarantee that all children, without discrimination, leave school equipped to face the challenges that they can expect to be confronted with in life;
  • Ensure access to vocational training, universities, and life-long learning opportunities for people with disabilities;
  • Ensure and introduce legislation to guarantee accessible, affordable transport for children with disabilities to travel to and from schools;
  • Ensure that home education is used only for short periods, and then only when absolutely necessary for health reasons;
  • Work with municipal authorities and others to ensure that children are not restricted to home education due to obstacles in their housing, a lack of transportation to and from local schools, or other barriers;
  • Children with disabilities and their parents should have real choices regarding their educational path. Children and parents should not feel compelled to opt for specialized schools due to failures of mainstream schools to provide reasonable accommodations for children.

Ensure quality teacher and staff training

  • Embed in core teacher training for all current teachers and student teachers courses on inclusive education based on the human rights model of disability, including on means and formats of communication, educational techniques and materials to support persons with disabilities; incorporate practical training, including with and by people with disabilities;
  • Provide this training also to school administrators, principals, vice principals, other education officials, and orphanage and institution directors and staff.

Ensure effective policy-making and education management

  • Establish a clear time frame to apply Universal Design measures for accessible environments in mainstream schools; incorporate the input of with people with disabilities in this process;
  • Capture and utilize data on students with disabilities, including disaggregated data and other evidence on the barriers that prevent persons with disabilities from having access to inclusive quality education;
  • Redefine budgetary allocations and resources for inclusive education, including transferring budgets and other available resources from residential institutions to mainstream schools;
  • Work with donors, NGOs and other groups working in the education sector, to ensure effective collaboration and use of donor resources and to avoid overlap.

To International Donors, including Diaspora Organizations 

  • Support the government in implementing these recommendations. 

Acknowledgments

This report was researched and written by Jane Buchanan, associate director in the Europe and Central Asia Division of Human Rights Watch. Giorgi Gogia, South Caucasus director for Human Rights Watch and Mihra Rittmann, researcher in the Europe and Central Asia Division, conducted and participated in numerous research interviews. The report was edited by Rachel Denber, deputy director in the Europe and Central Asia division. Giorgi Gogia, Emina Cerimovic, researcher in the Disability Rights Division, and Elin Martinez, researcher in the Children’s Rights Division of Human Rights Watch, provided specialist reviews. Research assistance was provided by Lyubov Lakomova, intern in the Europe and Central Asia Division of Human Rights Watch, and Anahit Chilingaryan, consultant to Human Rights Watch. Ani Asatryan, Anahit Chilingaryan, and Varduhi Dadunts provided translation, logistical, and other crucial support to make this research possible.

Production assistance was provided by Kathryn Zehr, Europe and Central Asia division senior associate, Olivia Hunter, photo and publications associate, Rafael Jimenez, graphic designer, Fitzroy Hepkins, administrative manager, and José Martínez, senior coordinator.

Human Rights Watch wishes to thank the many families, children, and others who shared their experiences and perspectives with us. Human Rights Watch also thanks the numerous individuals and organizations across Armenia who provided invaluable guidance, support, and expertise, and without whom this research would have not been possible. We are deeply grateful. 

 

[1] Human Rights Watch interview with Tanja Radocaj, UNICEF representative in Armenia, Artak Shakaryan, UNICEF Child Protection Programme Coordinator, and George Abadjian, UNICEF Child Protection Officer, Yerevan, April 12, 2016.

[2] Specialized orphanages care for children with so-called “severely limited capacities,” according to Governmental Decree No. 957-N, “On making amendments in a number of RA Governmental decrees,” adopted September 8. 2016.

[3] Human Rights Watch interview with Geghanush Gyunashyan, Department of Family, Women, and Children’s Issues, Ministry of Labor and Social Affairs of Armenia, May 24, 2016.

[4] Letter from Nairi Harutyunyan, Ministry of Education and Science of Armenia, to Human Rights Watch, December 14, 2016, and Letter from D. Loqyan, Minister of Territorial Administration and Development, to Human Rights Watch, December 26, 2016.

[5] UNICEF, “Children in Armenia,” 2016, http://www.unicef.am/en/articles/children-in-armenia (accessed December 15, 2016).

[6] According to the study, 88 percent of children in Armenia are deprived in at least one dimension. In rural areas, almost every child is deprived in at least one dimension (97 percent), compared to 82 percent in urban areas. UNICEF, “Child Poverty in Armenia: National Multiple Overlapping Deprivation Analysis,” 2016, http://www.un.am/up/library/ annual_report_2016_eng.pdf (accessed November 7, 2016).

[7] UNICEF, “Children in Armenia.”

[8] A. Berens and C. Nelson, “The science of early adversity: is there a role for large institutions in the care of vulnerable children?” The Lancet (2015); and 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).

[9] 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); and Megan M. Julian and Robert B. McCall, “The Development of Children within Alternative Residential Care Environments,” International Journal of Child and Family Welfare, 2011/3-4, pp. 119-147.

[10] Georgette Mulheir, “Deinstitutionalization: A Human Rights Priority for Children with Disabilities,” September 2012, http://www.equalrightstrust.org/ertdocumentbank/err9_mulheir.pdf (accessed April 30, 2016); Kevin Browne, “The risk of harm to young children in institutional care,” Child Rights Information Network, 2009, www.crin.org/en/docs/The_Risk_of_Harm.pdf (accessed April 30, 2016).

[11] UN Committee on the Rights of the Child, General Comment No. 20, On Implementing the Rights of the Child during Adolescence, UN Doc. CRC/C/GC/20 (2016), para. 52.

[12] R. Johnson, K. Browne, and C. Hamilton-Giachritsis, “Young children in institutional  are 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__2007_.pdf (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).

[13] Action plan on implementation of the Concept on development of the Alternative service system for children in difficult life circumstances (approved by Governmental Decree No. 36, September 15, 2016). On file with Human Rights Watch. 

 

[14] Human Rights Watch interviews with Hasmik Mkrtchyan, director, Marie Izmirlyan orphanage, Yerevan, May 25 and 26, 2016.

[15] Ibid.

[16] Ibid.

[17] Human Rights Watch interview with Harutyun Balasanyan, director, Kharberd orphanage, Kharberd, May 25, 2016.

18 Human Rights Watch interview with Hasmik Mkrtchyan, December 4 2016, and Human Rights Watch telephone interview with Hasmik Mkrtchyan, December 16, 2016.

19 Ibid.

20 Ibid.

[21] Ibid.

[22] Human Rights Watch interview with Hasmik Mkrtchyan, December 4, 2016.

[23] Human Rights Watch interviews with Hasmik Mkrtchyan, May 25 and 26, 2016.

[24] Human Rights Watch interviews with Aida Muradyan, Child Protection and Education Program Manager, World Vision Armenia, Yerevan, April 14, 2016 and December 6, 2016.

[25] Human Rights Watch interview with Harutyun Balasanyan, May 25, 2016.

[26] The transformation date has changed periodically, and as of December 2016, had been postponed from 2017 to 2018. Human Rights Watch interview with Artak Shakaryan, Child Protection Programme Coordinator, UNICEF, Yerevan, December 5, 2016.

[27] Human Rights Watch interview with staff member (name withheld), Vanadzor orphanage, Vanadzor, May 30, 3016.

[28] Human Rights Watch interview with Ani Marudaryan, April 14, 2016.

[29] Ibid.

[30] Human Rights Watch interview with Harutyun Balasanyan, May 25, 2016.

[31] Human Rights Watch interview with Samuel Khatchataryan, director, Zorag Psychiatric Care Center, Yerevan, December 4, 2016.

[32] Human Rights Watch interview with Mira Antonyan, director, Fund for Armenian Relief, Yerevan, May 26, 2016.

[33] Human Rights Watch interview with Harutyun Balasanyan, May 25, 2016.

[34] Human Rights Watch interview with Liana Karapetyan, director, Children’s Home of Yerevan, Yerevan, May 31, 2016.

[35] Human Rights Watch interview with Hasmik Mkrtchyan, December 4, 2016, and Human Rights Watch visit to Marie Izmirlyan orphanage, Yerevan, December 4, 2016.

[36] An example from a group discussion on October 17, 2016 under the initiative of "Full Life" NGO with the participation of "Hay Mayrer" Charity NGO, "We Can" NGO, and the parents of children with disabilities, as cited in: Save the Children Armenia Country Office Submission to the UN Special Rapporteur on the Rights of Persons with Disabilities on Provision of Support to Children with Disabilities,” October 28, 2016. On file with Human Rights Watch.

[37] Human Rights Watch interview with Rosa, Vanadzor, May 29, 2016.

[38] Human Rights Watch interview with Mira, (location withheld), May 26, 2016.

[39] Human Rights Watch group interview with mothers of children with disabilities, (location withheld), April 2016 (specific date withheld).

[40] Ibid.

[41] Human Rights Watch interview with Nelli, Shirak province (specific location withheld), May 27, 2016.

[42] Human Rights Watch interview with Anna Voskanyan, Kapan Child Protection Unit, Kapan, April 15, 2016.

[43] Human Rights Watch interview with Seda, Yerevan, May 31, 2016.

[44] Human Rights Watch interview with Lusine, Goris, April 16, 2016.

[45] Human Rights Watch interview with Asya, Gyumri, May 27, 2016.

[46] Human Rights Watch interview with Irina and Arshavir, Gegharkunik region (specific location withheld), May 30, 2016.

[47] Ibid.

[48] Human Rights Watch interview with Liana Karapetyan, May 31, 2016.

[49] Human Rights Watch interview with Gohar, (location withheld), April 2016 (specific date withheld).

[50] Ibid.

[51] Human Rights Watch interview with Armine, Gegharkunik province (specific location withheld), May 30, 2016.

[52] Human Rights Watch interview with head doctor, orphanage, May 2016.

[53] Human Rights Watch interview with Harutyun Balasanyan, May 25, 2016.

[54] Human Rights Watch interview with Liana Sargsyan, May 26, 2016.

[55] Human Rights Watch interview with doctor, Gyumri Children’s Home, Gyumri, May 27, 2016.

[56] The number of caregivers for orphanages is regulated by Governmental Decree No. 1292-N, “On establishing staff unit standards for state non-profit organizations operating under the Jurisdiction of the Ministry of labor and social affairs, which provide care and service and on making amendments in Governmental Decrees No. 730-N and No. 815-N from May 31, 2007,” adopted October, 29, 2015.

[57] Marinus H. van IJzendoorn et al., “Children in Institutional Care: Delayed Development and Resilience,” pp. 8-30; and Rebecca Johnson et al., “Young children in Institutional Care at Risk of Harm,” Trauma, Violence & Abuse, vol. 7, no. 1 (2006), pp. 34-60.

[58] UN Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, On Children Deprived of their Liberty, A/HRC/28/68, March 5, 2015.

[59] Human Rights Watch interview with Armine, Gegharkunik province (specific location withheld), May 30, 2016.

[60] UN Special Rapporteur on torture, Report on Children Deprived of their Liberty, March 5, 2015.

[61] Human Rights Watch interview with Hasmik Mkrtchyan, May 25, 2016.

[62] Human Rights Watch interview with Harutyun Balasanyan, May 25, 2016.

[63] Ibid.

[64] Human Rights Watch interview with Taguhi, (location withheld), May 2016.

[65] Human Rights Watch interview with Marine Ghalachyan, director, Ministry of Labor and Social Affairs Support Center for Children, Gyumri, May 27, 2016, and Human Rights Watch telephone interview with Marine Ghalachyan, December 16, 2016.

[66] Human Rights Watch interview with Ellen, Gyumri, May 27, 2016.

[67] Human Rights Watch interview with Elmira, 18, (location withheld), May 2016.

[68] Human Rights Watch interview with Tigranuhi Karapetyan, director, Mer Doon, Echmiadzin, May 25, 2016.

[69] Human Rights Watch interview with Arpi, (location withheld), May 2016.

[70] Human Rights Watch interview with Edmond, (location withheld), May 2016.

[71] Ibid.

[72] Human Rights Watch interview with Liana Sarkysan, deputy director and pediatrician, Kharberd orphanage, Kharberd, May 26, 2016.

[73] Human Rights Watch interview with doctor, Marie Izmirlyan orphanage, Yerevan, May 26, 2016.

[74] Council of Europe Commissioner for Human Rights, “Who Gets to Decide? Right to Legal Capacity for Persons with Intellectual and Psychosocial Disabilities,” April 2012, https://www.coe.int/t/commissioner/source/prems/IP_LegalCapacity_GBR.pdf (accessed December 18, 2016).

[75] The Civil Code defines particular situations when children can exercise limited legal rights based on their age. For example, children 14 to 18 can dispose of their wages, scholarships, and other income; exercise rights as a creator of a work of scholarship, literature or art, or of an invention, etc. Civil Code of the Republic of Armenia, arts. 29 and 30.

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

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

[78] Ibid., art. 32.

[79] See also, Helsinki Citizens’ Assembly Vanadzor, “RA Legislative Regulations on Recognizing an Adult Legally Incapable and Appointing a Guardian,” http://hcav.am/wp-content/uploads/2014/05/Legal-capacity-1.pdf (accessed December 18, 2016).

[80] The Helsinki Citizens’ Assembly Vanadzor, “Shadow Report on Armenia, The Convention on the Rights of Persons with Disabilities,” 2014, http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=INT%2 fCRPD%2fNGO%2fARM%2f19548&Lang=en (accessed December 18, 2016).

[81] Human Rights Watch interview with Edmond, (location withheld), May 2016.

[82] Human Rights Watch interviews with Hasmik Mkrtchyan, May 25 and 26, and December 4, 2016.

[83] Human Rights Watch interview with Armine Petrosyan, deputy director, Marie Izmirlyan orphanage, Yerevan, May 26, 2016.

[84] Ibid., and interview with Harutyun Balasanyan, May 25, 2016.

[85] Letter from Sh. Harutyunyan, Department of Family, Women, and Children’s Issues, Ministry of Labor and Social Affairs of Armenia, to Human Rights Watch, December 23, 2016.

[86] Human Rights Watch interview with Harutyun Balasanyan, May 25, 2016.

[87] Ibid.

[88] Human Rights Watch interview with Samvel Khatchataryan, director, Zorag Center for Psychiatric Care, Yerevan, December 4, 2016.

[89] Human Rights Watch interview with Seda Tarklyan, lawyer, Vanadzor orphanage, Vanadzor, May 30, 3016.

[90] International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, UN Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force March 23, 1976, art. 16; Universal Declaration of Human Rights (UDHR), adopted December 10, 1948, G.A. Res. 217 A(III), UN Doc. A/810 at 71 (1948), art. 6.

[91] United Nations Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, UN GAOR, 61st Sess., Supp. (No. 49) at 65, UN Doc. A/61/49 (2006), entered into force May 3, 2008, art. 12. This represents a shift from previous legal standards. The UN General Assembly in 1971 and 1991 took for granted that individuals with certain degrees of intellectual disability would not be capable of exercising some rights on their own and needed to be protected. Courts could thus deprive individuals of the capacity to make important decisions and exercise their rights. UN General Assembly, The Protection of persons with mental illness and the improvement of mental health care, A/RES/46/119, adopted at the 75th plenary meeting, December 17, 1991.

[92] CPRD, art. 12(4).

[93] The European Court of Human Rights (ECtHR) recognizes people who have been placed in institutions without their consent, if the staff at the institution exercises “complete and effective control over [their] care and movements” have been deprived of their liberty within the meaning of article 5 of the European Convention on Human Rights (See: ECtHR, H.L. v. United Kingdom (no. 45508/99) judgment of October 5, 2004, para.91, and ECtHR, Storck v. Germany, (no. 61603/00) judgment of July 16, 2005, paras. 74, 89.) Additionally, a person is deprived of liberty when placed in an institution against his or her will even if that person is not actively resisting institutionalization, the facility is not locked or lockable, or the person has been permitted to frequently leave the facility unsupervised. Thus, under the European Convention on Human Rights, the prohibition on arbitrary detention applies even to those facilities that claim they are not detaining individuals, as long as those housed within them are not free to leave.

[94] ICCPR, art. 9(1).

[95] CRPD, art. 14.

[96] Human Rights Watch interview with Mariana and Gevorg, Yerevan, May 28, 2016.

[97] Aravot has an agreement with the Ministry of Labor and Social Affairs to carry out this work in Lori and Shirak regions. Letter from Sh. Harutyunyan, Department of Family, Women, and Children’s Issues, Ministry of Labor and Social Affairs of Armenia, to Human Rights Watch, December 23, 2016.

[98] Human Rights Watch interview with Gohar, Gyumri, May 27, 2016.

[99] Human Rights Watch interview with Nara, Gegharkunik province (specific location withheld), May 30, 3016. 

[100] Human Rights Watch interview with Anna, Gegharkunik province (specific location withheld), May 30, 3016. 

[101] Human Rights Watch interview with Heghine, Gyumri, May 27, 2016.

[102] Ibid.

[103] Constitution of the Republic of Armenia, May 5, 2005, with amendments from November 27, 2005 and December 12, 2015), art. 33.2.

[104] Law of the Republic of Armenia On the Rights of the Child (1996, with amendments), art. 8.

[105] Ibid., art. 25.

[106] Law of the Republic of Armenia on The Social Protection of Children Without Parental Care, HO-411-N, September 24, 2002, art. 2, and ch. 2.

[107] Law of the Republic of Armenia on Social Assistance, HO-231-N, December 17, 2014, arts. 7, 8, 19, and 20.

[108] “Difficult life situation” is defined as any situation which a person cannot independently cope with or combination of such situations, including, among other issues: disability, illness, impediments to self-care due to age, absence of parental care, poverty, unemployment, family conflicts, violence, trafficking, being in a place of detention or returning from there. Law on Social Assistance, art. 2(1).

[109] Law on Social Assistance, art. 33 and ch. 6.

[110] UNICEF, “Child Poverty in Armenia: National Multiple Overlapping Deprivation Analysis.”

[111] Law of the Republic of Armenia On the Rights of the Child, HO-59, May 29, 1996, art. 26.

[112] Law of the Republic of Armenia On State Pensions, HO-243-N, December 22, 2010, arts. 26 and 28. 

[113] Republic of Armenia Government Decision No. 318-Ն of 2014, and Republic of Armenia Government Decision No. 1535 of December 24, 2015, "On approval of the procedure for the preparation and implementation of individual rehabilitation programs for persons with disabilities."

[114] Annual Report 2015 of the Human Rights Defender (Ombudsperson) of Armenia, as cited in Save the Children Armenian Country Office Submission to the UN Special Rapporteur on the Rights of Persons with Disabilities on Provision of Support to Children with Disabilities,” October 28, 2016. On file with Human Rights Watch.

[115] The law currently in force is the Law of the Republic of Armenia On Social Protection of Persons with Disabilities, HO-57-HN-0800-1, April 14, 1993.

[116] Human Rights Watch interview with Anahit Chilingaryan, independent human rights expert, Yerevan, December 5, 2016.

[117] Draft Law of the Republic of Armenia on Protection of the Rights of Persons with Disabilities and their Social Inclusion in the Republic of Armenia, Unofficial Translation, art., 4(1). On file with Human Rights Watch.

[118] Convention on the Rights of the Child (CRC), adopted November 20, 1989, G.A. Res. 44/25, annex, 44 UN GAOR Supp. (No.49) at 167, UN Doc. A/44/49 (1989), entered into force September 2, 1990, art. 27.

[119] Ibid., arts. 3(1) and 9(1).

[120] United Nations Guidelines for the Alternative Care of Children, adopted February 24, 2010, G.A. Res. A/RES/64/142, para. 15.

[121] Ibid., para. 53.

[122] CRC, art. 2, and CRPD, art. 19.

[123] CRPD, art. 23(5).

[124] CRPD, art. 23(3).

[125] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9 (2006); and UN Committee on the Rights of the Child, General Comment No. 7, Implementing Child Rights in Early Childhood, UN Doc. CRC/C/GC/7/Rev.1 (2006).

[126] Committee on the Rights of the Child, General Comment No. 9, para. 49.

[127] Recommendation CM/Rec (2010)2 of the Committee of Ministers to member states on deinstitutionalization and community living of children with disabilities, (Adopted by the Committee of Ministers on February 3, 2010 at the 1076th meeting of the Ministers’ Deputies); and Recommendation CM/Rec(2013)2 of the Committee of Ministers to member States 

on ensuring full inclusion of children and young persons with disabilities into society (Adopted by the Committee of Ministers on October 16, 2013 at the 1181st meeting of the Ministers’ Deputies).

[128] Human Rights Watch interview with Narine Manukyan, director, Mothers of Armenia, Yerevan, April 12, 2016.

[129] Letter from Nairi Harutyunyan, Ministry of Education and Science of Armenia, to Human Rights Watch, December 14, 2016; Human Rights Watch interviews with Lilit Nazaryan, Open Society Foundations-Armenia, Yerevan, April 12, 2016, and with Susanna Tadevosyan, director, Bridge of Hope, Yerevan, April 12, 2016 and December 6, 2016.

[130] The first region deemed inclusive is Syunik. Lori, Tavush, Armavir, are slated to be inclusive in 2017. There are 54 inclusive schools in Yerevan. Human Rights Watch interview with Susanna Tadevosyan, December 6, 2016.

[131] According to the Law on Education, children with special educational needs who have vocal or speech disabilities, hearing or visual disabilities, have intellectual disabilities or suffer moderate, severe and profound motor disabilities are entitled to additional state support with an increased funds rate (three to four times higher per child), Law of the Republic of Armenia on General Education HO-160-N, May 29, 2015, art. 35.

[132] Letter from N. Harutyunyan, December 14, 2016.

[133] Human Rights Watch interview with Hakob Abrahamyan, president, Pyunik Union of Disabled Persons, Yerevan, April 14, 2016.

[134] Human Rights Watch interview with Tigranui Akopyan, director, Emil’s Little Sun Center, Armenian Caritas, Gyumri, April 18, 2016.

[135] Human Rights Watch interview with Armen Alaverdyan, director, Unison, Yerevan, April 13, 2016.

[136] Human Rights Watch interview with Susanna Tadevosyan, December 6, 2016.

[137] Human Rights Watch interview with Mari Minasyan, Goris, April 15, 2016.

[138] Ibid.

[139] Human Rights Watch interview with Luisa, Gyumri, April 18, 2016.

[140] Human Rights Watch interview with Aida, Gyumri, April 18, 2016.

[141] Human Rights Watch interview with Narine Manukyan, April 12, 2016.

[142] Human Rights Watch interview with Luisa, Gyumri, April 18, 2016.

[143] Human Rights Watch interview with Gohar, (location withheld), April 2016 (specific date withheld).

[144] Human Rights Watch interview with Tigran’s mother, Goris, April 16, 2016.

[145] Human Rights Watch interview with Anahit’s mother, Goris, April 16, 2016.

[146] Human Rights Watch interview with Sofia Harsopyan, psychologist, Inclusive School No. 20, Yerevan, May 24, 2016.

[147] Human Rights Watch interview with Gayane Grigoryan, Agate, Gyumri, April 18, 2016.

[148] Human Rights Watch interview with Narine and her grandmother, Vanadzor, April 19, 2016.

[149] Human Rights Watch interview with Armen Alaverdyan, April 13, 2016.

[150] Human Rights Watch interview with Elmira, Yerevan, May 24, 2016.

[151] Human Rights Watch interview with Gohar, (location withheld), April 2016.

[152] Human Rights Watch interview with Yelena, Yerevan, April 20, 2016.

[153] Human Rights Watch interview with Mariam, Yerevan, April 20, 2016.

[154] Ibid.

[155] Human Rights Watch interview with Rosanna, Goris, April 16, 2016.

[156] Human Rights Watch interview with Anush Mkrtchyan, teacher, Goris Inclusive School No. 6, Goris, December 2, 2016.

[157] Human Rights Watch interview with Marine, Yerevan, May 24, 2016.

[158] Human Rights Watch group interview with mothers of children with disabilities, April 2016 (specific date withheld).

[159] Human Rights Watch interview with Anush and Hakob, Gyumri, April 18, 2016.

[160] Ibid.

[161] Ibid.

[162] Human Rights Watch interview with Sofia Harsopyan, May 24, 2016.

[163] Ibid.

[164] Human Rights Watch interview with Margarita Badasyan, director, Armavir School No. 5, Armavir, May 28, 2016.

[165] Human Rights Watch interview with Susanna Tadevosyan, April 20, 2016.

[166] Human Rights Watch interview with Anahit’s mother, Goris, April 16, 2016.

[167] Human Rights Watch interview with Milena, (location withheld), April 2016 (specific date withheld).

[168] Human Rights Watch interview with Elena, Kapan, April 15, 2016.

[169] Human Rights Watch interview with Varsik, Yerevan, May 24, 2016.

[170] Human Rights Watch interview with Hakob Abrahamyan, president, Pyunik Union of Disabled Persons, Yerevan, April 14, 2016.

[171] Human Rights Watch interview with Sofia Harsopyan, May 24, 2016.

[172] Human Rights Watch interview with Kristina, Yerevan, April 20, 2016.

[173] Human Rights Watch interview with Rita, Special School No. 1, Goris, April 16, 2016.

[174] Human Rights Watch interview with Nina and her mother, Vanadzor, April 19, 2016.

[175] Ibid.

[176] Human Rights Watch interview with Armine Kolyan, teacher, Goris Inclusive School No. 6, December 2, 2016.

[177] CRPD, art. 8.

[178] Human Rights Watch group interview with mothers of children with disabilities, April 2016 (specific date withheld).

[179] Human Rights Watch interview with Tigranui, Yerevan, April 21, 2016.

[180] Human Rights Watch interview with Armine Razaryan, Gyumri, April 18, 2016.

[181] Human Rights Watch interview with Narek’s mother, Gyumri, April 18, 2016.

[182] Human Rights Watch interview with Volodya, Gegharkunik province (specific location withheld), May 30, 2016.

[183] Human Rights Watch interview with Gayane Azoyan, May 28, 2016.

[184] Human Rights Watch interview with Nelli, Shirak province (specific location withheld), May 2016 (specific date withheld).

[185] Human Rights Watch interview with Stepan, Vanadzor, May 29, 2016.

[186] Human Rights Watch interview with Sasun Artrunyan, director, Vanadzor Special School No. 1, Vanadzor, April 19, 2016.

[187] Human Rights Watch interview with Manuk Mkrtchyan, deputy minister, Ministry of Education and Science, Yerevan, April 21, 2016.

[188] Human Rights Watch interview with Susanna Tadevosyan, April 12, 2016.

[189] Human Rights Watch interviews with Amalya Harutyunyan, director, Yerevan Special School No. 17, Yerevan, April 13, 2016; with Hermine Shahunts, director, Goris Special School No. 1, Goris, April 16, 2016, and with Tigran Ghulyan, director, Gyumri Special School No. 3, April 18, 2016.

[190] Human Rights Watch interview with Gegine, Yerevan, April 20, 2016.

[191] Ibid.

[192] Human Rights Watch interview with Anna, Yerevan, April 20, 2016.

[193] Ibid.

[194] Human Rights Watch interview with Ovsana, Goris, April 16, 2016.

[195] Human Rights Watch interview with Larissa, Vanadzor, April 19, 2016.

[196] Human Rights Watch interview with Lusine Agajanyan, Gyumri, April 18, 2016.

[197] Human Rights Watch interview with Amalya Harutanyan, April 13, 2016.

[198] Letter from N. Harutyunyan, December 14, 2016.

[199] Human Rights Watch interview with Sasun Arturyan, director, Vanadzor Special School No. 1, Vanadzor, April 19, 2016.

[200] Human Rights Watch interview with Amalya Harutanyan, April 13, 2016.

[201] Human Rights Watch interview with Anush and Hakob, Gyumri, April 18, 2016.

[202] Law on Education, arts., 17(5) and 5(1).

[203] Human Rights Watch interview with Lilit Arsanyan, director, and Varduhi Varderyan, former director, Yerevan Assessment Center, Yerevan, June 1, 2016.

[204] Human Rights Watch interview with Armine Kolyan, teacher, Goris Inclusive School No. 6, Goris, December 2, 2016.

[205] Human Rights Watch interview with Nina and her mother, Vanadzor, April 19, 2016.

[206] Ibid.

[207] Human Rights Watch interview with Anush Aslanyan, president, Equal Rights, Equal Opportunities, Vanadzor, April 19, 2016.

[208] Human Rights Watch interview with Amalya Harutanyan, April 13, 2016.

[209] Human Rights Watch interview with special education teacher, (location withheld), April 2016 (specific date withheld).

[210] Ibid.

[211] Human Rights Watch interview with Narine Manukyan, April 12, 2016.

[212] Human Rights Watch interview with Armine, (location withheld), April 2016 (specific date withheld).

[213] Ibid.

[214] Human Rights Watch interview with Anush and Hakob, Gyumri, April 18, 2016.

[215] Human Rights Watch interview with Hasmik, Gyumri, April 18, 2016.

[216] Ibid.

[217] Human Rights Watch interview with Margarita Badasyan, May 28, 2016.

[218] Human Rights Watch interview with Amalya Harutanyan, April 13, 2016.

[219] Human Rights Watch interview with Narine Manukyan, April 12, 2016.

[220] Human Rights Watch interview with Gohar, (location withheld), April 2016 (specific date withheld).

[221] UNICEF, “Children in Armenia,” and Human Rights Watch interview with Arsen Stepanyan, Armenia country director, Save the Children, Yerevan, April 13, 2016.

[222] Human Rights Watch interview with Nelli, (location withheld), May 24, 2016.

[223] Human Rights Watch interview with Gayane Azoyan, deputy director, Hatsik school, Hatsik, May 28, 2016.

[224] Human Rights Watch interview with Susi, Armavir province, May 28, 2016.

[225] Ibid.

[226] Human Rights Watch interview with Harutyun Balasanyan, director, Kharberd orphanage, May 25, 2016.

[227] Human Rights Watch interview with Karine, Marie Izmirlyan orphanage, Yerevan, May 2016 (specific date withheld).

[228] Human Rights Watch interviews with Hasmik Mkrtchyan, May 25 and 26, 2016.

[229] Human Rights Watch interview with Anna Begjanyan, director, Gyumri Children’s Home, Gyumri, May 27, 2016.

[230] Human Rights Watch interview with Mira, (location withheld), May 26, 2016.

[231] Human Rights Watch interview with Taguhi, (location withheld), May 2016 (specific date withheld).

[232] Constitution of the Republic of Armenia, art. 39.

[233] Law on Education, arts. 4(2.1), and 3(10.3).

[234] Ibid., art. 3(10.8) and (10.9).

[235] Ibid., art. 8(1.3).

[236] Ibid., art. 3(10.1).

[237] Determined by severity. Ibid. art. 35(3.1).

[238] Law on the Rights of the Child, art. 26.

[239] CRPD, art. 2, and CRC, art. 2(1). 

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

[241] United Nations Committee on the Rights of Persons with Disabilities, General Comment No. 4, UN Doc. CRPD/C/GC/4 (2016), paras. 13, 37.

[242] CRPD, arts. 4 and 24.

[243] CRPD. arts. 2, 5, and 24.

[244] Committee on the Rights of Persons with Disabilities, General Comment No. 4, para. 21.

[245] United Nations Committee on Economic, Social and Cultural Rights, General Comment No. 13, The Right to Education, UN Doc. E/C.12/1999/10 (1999), para. 6 c); United Nations Committee on the Rights of the Child, General Comment No. 1, The Aims of Education, UN Doc. CRC/GC/2001/1 (2001), para. 9.

[246] Committee on the Rights of the Child, General Comment No. 1, para. 5.

[247] Committee on the Rights of Persons with Disabilities, General Comment no. 4, para. 12.

[248] United Nations General Assembly, Report of the Special Rapporteur on the right to education, Kishore Singh, Assessment of the educational attainment of students and the implementation of the right to education, A/HRC/26/27, May 2, 2014, paras. 79 and 81; UN Committee on the Rights of the Child, General Comment No 1, para. 9.

[249] United Nations Educational, Scientific and Cultural Organization (UNESCO) Convention against Discrimination in Education, adopted December 14, 1960, entered into force May 22, 1962, art. 4(b), notice of succession by Armenia on September 5, 1993.

[250] Committee on the Rights of Persons with Disabilities, General Comment no. 4 (2016), para. 9.

[251] CRPD, art. 24(1), and Committee on the Rights of Persons with Disabilities, General Comment no. 4, para. 8.

[252] Committee on the Rights of Persons with Disabilities, General Comment no. 4, paras. 16, 33.

[253] Ibid., para. 32.

[254] Ibid., para. 12. UNICEF has found that inclusion “requires responding to the diversity of needs among all learners, … and reducing exclusion from and within education.” UNICEF, “The Right of Children with Disabilities to Education: A Rights-based Approach to Inclusive Education,” 2012, http://www.inclusive-education.org/system/files/publicationsdocuments/UNICEF_Right%20Children%20Disabilities_En_WebACCESS.pdf (accessed July 2, 2015).

[255] UNICEF, “The Right of Children with Disabilities to Education.”

[256] Committee on the Rights of Persons with Disabilities, General Comment no. 4, para. 64.

[257] UNICEF, “The Right of Children with Disabilities to Education.”

[258] CRPD, art. 7(2).

[259] Ibid., art. 7(3).

[260] Ibid., art. 2(4).

[261] Ibid., art. 2(3).

[262] United Nations Committee on the Rights of Persons with Disabilities, General Comment No. 2, Accessibility, UN Doc. CRPD/C/GC/2 (2014), para. 26.

[263] Committee on the Rights of Persons with Disabilities, General Comment No. 4, para. 33.

[264] United Nations Human Rights Council, Report of the Office of the UN High Commissioner for Human Rights, Thematic Study on the Right of Persons with Disabilities to Education, A/HRC/25/29, December 18, 2013.

[265] Committee on the Rights of Persons with Disabilities, General Comment No. 4, paras. 27 and 29.

[266] CRPD, art. 24(3c).

[267] Ibid., art. 26(3).

[268] Committee on the Rights of Persons with Disabilities, General Comment No. 4, paras. 29 and 32.

[269] CRPD, art. 24(4).

[270] Human Rights Watch interview with Tanja Radocaj, Artak Shakaryan, and George Abadjian, UNICEF, April 12, 2016. The role of the pedagogical-psychological support centers is specified in the Law on Education, art. 17(1).

[271] Ibid.

[272] Letter from N. Harutyunyan, December 14, 2016.

[273] Ibid.

[274] Human Rights Watch interview with Artak Shakaryan, December 5, 2016, and Letter from N. Harutyunyan, December 14, 2016.

[275] Human Rights Watch interview with Artak Shakaryan, December 5, 2016.

[276] UNICEF, “Towards Alternative Child Care Services in Armenia: Costing Residential Care Institutions and Community Based Services,” July 2010, http://www.unicef.org/armenia/Costing_Residential_Care_Institutions_in_Armenia_report_eng.pdf (accessed November 8, 2016).

[277] Human Rights Watch interview with Aida Muradyan, April 14, 2016.

[278] Human Rights Watch interview with Margarita Shahverdyan, director, Aravot, Vanadzor, May 29, 2016, and Human Rights Watch interview with Artak Shakaryan, December 5, 2016.

[279] “2017-2021 Strategic Plan for the Protection of the Rights of the Child,” approved by the Republic of Armenia Government Decision N.131 of January 14, 2016 on "Approving the 2016 Action Plan and Priorities of the Government of the Republic of Armenia,” on file with Human Rights Watch.

[280] Human Rights Watch interview with Arsen Stepanyan, December 6, 2016.

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

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

[283] Focus group discussion on October 17, 2016, as cited in: Save the Children Armenia Country Office Submission to the UN Special Rapporteur on the Rights of Persons with Disabilities, October 28, 2016. On file with Human Rights Watch.

[284] Save the Children Submission to the UN Special Rapporteur on the Rights of Persons with Disabilities, October 28, 2016.

[285] Ibid. Law of the Republic of Armenia on Public Organizations, HO-268, December 4, 2001.

[286] Human Rights Watch interview with Marine Ghalachyan, director, Ministry of Labor and Social Affairs Support Center for Children, Gyumri, May 27, 2016, and Human Rights Watch telephone interview with Ghalachyan, December 16, 2016.

[287] 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.

[288] Human Rights Watch interview with Liana Karapetyan, May 31, 2016.

[289] Human Rights Watch telephone interview with Arsen Stepanyan, November 2, 2016.

[290] Human Rights Watch interview with Aida Muradyan, April 14, 2016. 

[291] Human Rights Watch interview with Hasmik Mkrtchyan, December 4, 2016.

[292] Human Rights Watch interview with Anna Voskanyan, Kapan Child Protection Unit, Kapan, April 15, 2016.

[293] Human Rights Watch interview with Liana Karapetyan, May 31, 2016.

[294] Human Rights Watch interviews with Hasmik Mkrtchyan, May 25 and May 26, 2016.

[295] Human Rights Watch interview with Liana Sargsyan, May, 25, 2016.

[296] Human Rights Watch interview with Liana Karapetyan, May 31, 2016.

[297] Law on Education.

[298] Human Rights Watch interview with Arsen Stepanyan, December 6, 2016.

[299] Letter from Harutyunyan, December 14, 2016.

[300] Human Rights Watch interview with Lilit Asryan and Varduhi Varderyan, June 1, 2016.

[301] Bridge of Hope, “Submission to the Committee for the UN Convention on the Rights of Persons with Disabilities, Day of General Discussion on Article 24, Education,” no date, on file with Human Rights Watch.

[302] Human Rights Watch interview with Lilit Arsanyan and Varduhi Varderyan, June 1, 2016.

[303] Human Rights Watch interview with Susanna Tadevosyan, December 6, 2016.

[304] Human Rights Watch interview with Susanna Tadevosyan, April 20, 2016.

[305] Human Rights Watch interview with Lilit Arsanyan and Varduhi Varderyan, June 1, 2016; Bridge of Hope, “Submission to the Committee for the UN Convention on the Rights of Persons with Disabilities, Day of General Discussion on Article 24, Education.”

[306] Human Rights Watch telephone interview with Hermine Shahunts, director, Goris Special School No. 1, October 26, 2016.

[307] ICF provides a standard language and framework for the description of health and health-related states. It is used to describe changes in body function and structure, what a person with a health condition can do in a standard environment (their level of capacity), as well as what they actually do in their usual environment (their level of performance). In ICF, the term functioning refers to all body functions, activities and participation, while disability is similarly an umbrella term for impairments, activity limitations and participation restrictions. ICF also lists environmental factors that interact with all these components. http://www.who.int/classifications/icf/icfbeginnersguide.pdf?ua=1; and http://www.who.int/classifications/icf/en/.

[308] Human Rights Watch interview with Susanna Tadevosyan, April 20, 2016.

[309] Human Rights Watch telephone interview with Hermine Shahunts, October 26, 2016.

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

As I tucked my daughter into bed, our cozy bedtime chat about the day and what's on our minds turned to the new neighbors we had met the week before. I was feeling very lucky to have them. Not only because I love our town and its welcoming, diverse vibe, but because if they had not arrived when they did, they might not have made it all.

The Abdullah family — a pseudonym — are refugees from Syria. They arrived in the U.S. exactly one week before President Trump signed an executive order banning people like them, who'd escaped an unbearably brutal war, from starting new lives here.

My daughter, 10, and I met the Abdullahs as we brought them dinner on Friday night. Three synagogues, including the one we belong to, are cooperating to support the family in getting settled, including with meals two days a week. Although our instructions were to leave our contribution in a cooler by the front door, the family saw us arrive, and invited us in.

As we removed our shoes at the doorway, they smiled, anticipating our entry. I had tried to teach my daughter to greet them in the traditional Muslim way, "as-salaam alaikum." But she was nervous. She had trouble untying her shoe at the door. The words jumbled in her mouth. I think she managed "Salaam." But the family earnestly responded "Wa alaikum as-salaam." And peace be upon you.

Introductions over, we sat down on a large wrap-around couch that took up most of the living room. The couch was more familiar than the family, as one of our friends had donated it to them. The Abdullahs came with only what they could carry.

There is tremendous interest in our community in helping the Abdullahs, which means we try to put ourselves in their shoes — we’re still learning how. At one point there had been discussion of using funds to buy gift cards for a local movie theater and restaurants. A nice gesture, but life was likely to be disorienting enough for them for a while. Maybe the gift card culture could be introduced at a later stage.

So, we stuck to the basics: furniture, clothing, warm coats, a stocked pantry, and home-cooked meals.

We sat quietly, trying to make some attempts at small talk. The mother, Fatima, just smiled. Amira, 21, spoke for the family; her English was best. Her sister, Shaza, 17, also clearly knew English and would jump in when Amira and I struggled to communicate. But Shaza was in her own world, in that universal, too cool, teenager way. Mostly she kept to her phone. I hoped she was still in touch with friends from Syria. Or from the refugee camp in Turkey where the family had spent three years. Starting a new school is hard, even for kids who haven't been displaced by war. She'll still need her old networks, as she makes new ones here.

I tried to understand some of the basics of the Abdullahs' recent life. I'm looking for a personal connection, and a way to introduce my daughter to people with experiences that are different from her own. It was quickly clear my work life at Human Rights Watch was not far away.

The Abdullahs are from Damascus. Shaza had been out of school since the family fled their home. Aisha, almost 7, had never been to school. We have documented how Syrian families who have managed to escape horrifying attacks land in neighboring countries where they face often-insurmountable hurdles to getting their kids in school. It is particularly difficult for children with disabilities like Aisha, who has Down Syndrome.

We continue chatting. Karam, the girls' father, pulled up a translator app on his phone: "I am Turkmen" it announced. Ethnic Turkmens? Hm, another possible connection? I do some work on Turkmenistan ... but how to explain. It's too much for now. But there is time. We'll have more conversations.

We talked a bit about Aisha starting elementary school soon. Her birthday is coming up. I asked how they usually celebrate in their family. "Cake!" came the answer. Amira said, "Aisha also loves pizza." I smiled in acknowledgment: "That's exactly what we ate for my son's 6th birthday last week!" Knowing laughter all around. The conversation, such as it was, slowed. It was time for our family to make dinner; time for the Abdullahs' dinner as well.

I've been thinking about the family a lot ever since, and apparently my daughter has too. The last thing she said as I turned out the light in her room was, "I really can't wait to see the Abdullahs again. Maybe we can even have pizza?"

Yes, I thought, good idea. We come from utterly different worlds, but the connections are many. All we have to do is be open to finding them.

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

The European Union has provided significant funding to the Greek government, and to United Nations and nongovernmental agencies, to operate the centers on the Greek eastern Aegean islands, known as “hotspots,” and camps on the mainland. But asylum seekers and other migrants with disabilities have particular difficulties getting basic services such as shelter, sanitation, and medical care, and like other vulnerable migrants, have limited access to mental health care. For example, one older woman who uses a wheelchair had not been able to take a shower for a month.

Posted: January 1, 1970, 12:00 am