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.